Jacob's Journey
The journal of our son's treatment and recovery from childhood cancer.
| This is the story of our family's battle with our son's childhood cancer. It all started with what we thought was a sinus infection or really bad allergies. Jacob's left nostril closed up first, and by the end of May 2008 both nostrils had closed and he could only breath through his mouth. Our pediatrician refered us to an ENT doctor who diagnosed it as Burkitts Lymphoma. He had a solid tumor located in his nasopharynx. It was pretty devastating news to hear that our child had cancer. We were really terrified for a while, but several years ago Jacob's mother, Christina, worked as a relief oncology pharmacist at her hospital and got to know a lot of people in the oncology unit. When we got the diagnosis of cancer, she talked to a highly respected oncologist who gave us hope. Everything was lined up to take care of Jacob even before the final results were back from the tissue biopsy conducted by the ENT doctor. Below is the journal that my wife and I kept while Jacob was undergoing treatment and later during his recovery. Originally it served the purpose of recording the events of his treatment and keeping friends and family informed on his progress. I offer it here for you to read so that you can gain a greater understanding of what it is like to deal with childhood cancer. The journal starts out sketchy with only coarse detail. We were in shock at the beginning and only recorded the bare essentials. As time wore on we became more reflective and began to write about our thoughts and feelings in addition to specific events that were happening to Jacob. I hope you find this information to be useful. For a brief overview go to the Front Page. A little bit about ourselves: We are a family of four -- two boys, a mother and father. My wife, Christina, is a pharmacist at a local pediatric hospital. Jacob, our son, was eleven years old when he was diagnosed with cancer. Andrew, Jacob's little brother, is our adopted son and was one year old at the time Jacob was diagnosed. My name is Scott. I am also a pharmacist, but work full time at my family farm. |
| JOURNAL January 2008 In retrospect we realize Jacob showed the first signs that something was wrong around January. He had periods of being lethargic, would wake up with bags under his eyes, and just did not seem his normal self. His pediatrician ordered a blood test (looking for leukemia) which did not show anything abnormal. 2/10/08 Jacob had his first major nosebleed. It was a major gusher with blood pouring from his nose. We didn't suspect anything too unusual at this point. March 2008 Jacob's left nostril completely plugs up. He was seen by pediatrician. Nasal steroid prescribed. April 2008 Nasal steroid found ineffective. Referal to ear, nose and throat (ENT) specialist. 5/19/08 Jacob's right nostril has now plugged up. Jacob cannot smell anything, mouth breathing only. ENT apointment rescheduled so that Jacob can be seen sooner. It is now appearant that there is definitely something significantly wrong with Jacob. 6/20/08 Friday appointment with Dr. Brent Lanier (ENT). Diagnosis: tumor, possibly an angiofibroma 6/25/08 Wednesday CT scan with contrast 6/27/08 CT results received, probable lymphoma. Biopsy scheduled. 7/1/08 Christina visits Dr. Vonda Crouse, an oncologist at Children's Hospital Central California. She has worked with her in the past. Dr. Crouse allays much of our fear and gives us hope. 7/2/08 Pre-op appt with Dr. Lanier. 7/3/08 Biopsy of nasopharyngeal mass performed by Dr. Lanier 7/7/08 Diagnosis lymphoma, still waiting for cell type 7/9/08 First appt at oncology clinic, IV started (3 pokes) , blood draw/urinalysis, echo/EKG, whole body CT with contrast, chest xray 7/10/08 9:30 am surgery, mediport inserted, spinal tap, bone marrow aspiration, first dose of chemo received (IT mtx/hc). Final results from pathologist received: diagnosis of Burkitts Lymphoma. Admitted to Craycroft Oncology Unit; Chemo drugs: cytoxan, rasbiricase and vincristine, prednisone [NOTE: At this point Christina and I begin recording in the journal. The entries before this point are simply notes that we pulled from our memories.]
7/12/08 1:30 pm Jacob's right nostril opens a little, 2:15pm Jacob's left nostril opens a little. Jacob smells for the first time in 8 weeks. Gallium radioisotope administered (gallium imaging scan to follow). 7/13/08 Jacob is at Children's Hospital Central California (CHCC). He's been admitted to the oncology unit and has received his first round of chemotherapy (started 7/10/08). He's tired of being hooked up to an IV line and is looking forward to coming home (hopefully on Monday 7/14/08). His spirits are high when he has visitors, and he enjoys watching the Disney Channel. The nasopharyngeal mass (tumor) is responding to the chemotherapy and has shrunk enough that he can now breath through his nose. It is the first time he has been able to do this since the end of May. |
| 7/14/08
Galium scan at 7am, Jacob discharged from CHCC at 2:45pm 7/14/08 - Monday Jacob was discharged today. He's very happy to be home. He nicknamed his IV pole "Fred" and didn't shed a tear when he was disconnected. This morning he had a gallium scan that will help discover possible tumor activity in other areas of his body. Thursday (7/17/08) we go back to the hospital for more scans (gallium, PET, and CT). The results of the scans will dictate the particulars of the next course of chemotherapy. At this point we don't know if the chemotherapy will be out patient or inpatient. 7/15/08 Jacob got a really short haircut to help reduce the trauma of hair loss. 7/17/08 - Thursday Jacob had his second gallium scan today. Tomorrow he will have a CT & PET scan and then be admitted for his second course of chemotherapy at Children's Hospital Central California. This course will involve heavier doses than the first course and Jacob will probably feel sicker this time around. For those of you interested he'll receive rituximab, vincristine, prednisone, methotrexate & leucovorin, cyclophosphamide, doxorubicin, and G-CSF. -ST 7/18/08 - Friday This is the date of the original Ear, Nose and Throat (ENT) doctor appointment for Jacob before it was moved up. We would have had to wait two and half months to see the ENT. Luckily the pediatrician called the ENT's office and expressed some urgnecy and the exam was rescheduled for 6/20/08. -ST ------ Jacob will be going back into the hospital today (Friday, 7/18/08). He will be receiving chemotherapy almost every day for the next week. If anyone would like to come visit him while he is in the hospital you are welcome! So far, it looks like the tumor is starting to shrink in size. Jacob had three scans this week, so we will know more about the status of the tumor in the coming days. Please keep Jacob in your prayers. Jacob has been enjoying his Uncle Mark's company for the last two days. -Christina 7/19/08 -Saturday Jacob received rituximab last night. This is a special type of chemo drug that is a monoclonal antibody. It seeks out the lymphoma cells and brings it to the attention of the immune system (the antibody seeks out the CD20 antigen which is a protein expressed in high concentrations on the surface of the cancerous B-lymphocytes and then activates immune system's cytoxic mechanisms to kill the cancer cells). There are some nasty side effects potentially asociated with this otherwise wonderful drug. Last night I was watching him pretty closely, but Jacob only expreinced night sweats. Basically he sailed through with no real problems. This morning he was in good spirits and hungry. That's always a good sign! There's no chemo scheduled for today so he has the rest of the day off (even though he has to remain in the hospital). The results of his two gallium scans show that tumor activity is confined to the posterior nasopharynx. No test or scan is going to be absolutely definitive in detecting the possible spread of cancer, but the gallium and CT scans in addition to the bone marrow biopsy and spinal tap have all come up negative. That's good news, that's REALLY good news! Christina and I breath just a little bit easier each time we get more evidence that Jacob's tumor is confined to one spot. -ST  7/20/08 - Sunday Jacob is doing pretty well. He was admitted to Children's Hospital Central California on Friday afternoon. He will be there all week because he is receiving chemo almost everyday. Jacob LOVES getting visitors. It makes him feel so much better! Jacob had a little scare tonight. Nothing went wrong, but the chemo he received was a yellow-green color (methotrexate). Scott said that Jacob has watched too many Smallville episodes with glowing green goo infusing into people. The color was unsettling for the little guy. We have some good news! We got the results of the Galium scans back (Jacob had two of these scans done this week). The Galium scan shows that the only place the Burkitt's Lymphoma tumor is hiding is in the nasopharynx (hooray!!). We also had a PET CT done this week (another type of scan). We should get those results sometime this week. Please keep praying! It's working! Scott is trying to keep the website updated. I think he's doing a great job! Please check it out when you have time! Again, Jacob loves to have visitors! All we ask is that you be well when you visit. Thank you to all of you who have taken the time to be with Jacob at the hospital (and at home too)! You are all helping him through this difficult time! -Christina  Jacob, his dad and little brother 7/21/08 - Monday Jacob had a procedure today called a lumbar puncture ("a spinal tap"). A sample of his cerebral spinal fluid (fluid that bathes the spinal cord and brain) was collected and some chemotherapy (methotrexate + hydrocortisone) was administered into the spinal fluid. He was sedated for the procedure so he's been groggy for most of the day. This evening he'll receive more IV chemotherapy. Christina spent the day time with him and I will take the nightshift. The hospital stay has been hard on Jacob with the constant IV fluids and bathroom visits (and being tethered to the IV pole), the chemotherapy, and hospital staff coming into check on him through out the day and night. Christina and I are also starting to get a little ragged around the edges and we are both pretty tired. -ST 7/22/08 - Tuesday More good news: the results of the combo CT and PET scan show that Jacob's tumor is probably confined to his nasopharynx. This means he'll have a shorter course of chemotherapy (maybe finished by the end of the year) than if the cancer was located in multiple spots. Dr. Crouse, Jacob's primary oncologist, gives us copies of all of the reports. When Christina or I get one of these sheets of paper, it is like a present -- a really incredible gift. Jacob's very first CT scan showed the tumor size to be 3.7 x 4.1 x 4.9 cm. The CT / PET scan showed that the tumor had shrunk down to 1.9 x 3.2 x 3.6 cm.  First
CT scan (6/25/08)
Jacob's teacher from last school year visited him last night and played Clue and Uno with him. He very much enjoyed the company. And today both grandma's and Andrew spent time with him. He's a very brave little boy and I am impressed by how well he is dealing with everything that is happening to him. But what he likes most when he is in the hospital (other than being discharged) is when people come in to see him. I want to say thank you to each of you who have come by and brightened his day. If you can't get in to see him, send him an email directly or via Christina or myself. As best we can tell, he'll be at the hospital until the 25th or 26th. Then if he stays healthy, he'll get to spend 2 to 3 weeks at home before the next admission. -ST 7/23/08 - Wednesday Jacob was feeling under-the-weather this morning. He didn't stir until I was ready to leave at 11 AM. Last night he was feeling nauseous and received a sedative (ativan) to help calm his stomach. It worked, but I think this morning he was feeling the after effects. -ST 7/24/08 - Thursday Jacob will be discharged either Friday or Saturday. He has another lumbar puncture scheduled tomorrow. If he recovers well from that then he'll be able to come home. And boy-oh-boy is he ready to come home. My poor little guy is tired of the hospital and complains about missing home and his little brother. The nurses tell me that physically he's handling this better than the average pediatric patient. But Christina and I see how he's getting emotionally drained by the whole ordeal and we very much want to bring our little boy home. And on a purely selfish note . . . it will be nice to sleep in my own bed instead of an uncomfortable sofa bed at the hospital. Something interesting that a coulple nurses commented on is that Jacob cleared the methotrexate from his system much faster than the average kid and consequently didn't have leucovorin administered as long as most kids would need it. He must have some really good kidneys (I noticed that his creatinine levels were always good). -ST 7/25/08 - Friday Jacob will be coming home on Saturday 7/26/08. It's been a very long week for Jacob with a lot of chemo, but he's doing pretty well and he is looking forward to coming home. On Monday and Wednesday some family friends visited Jacob! They brought him little gifts and big smiles! Jacob had a lot of fun playing Uno with them. On Thursday Jacob's friend and classmate, Lindsey, and her mom visited. Thank you all for your sweet gifts and prayers! We greatly appreciate everything you are doing to help Jacob through this! We are hoping to be able to keep Jacob home for about two weeks. I hope some of you will be able to come visit him! He won't be able to go places because of his weak immune system. As long as you are healthy, I know he would love to see you! -Christina 7/26/08 - Saturday We have Jacob home! It has been a very long haul and we are all exhausted. Jacob says he's tired and feels beaten up, but happy to be home. We are just going to lay low for a while and recuperate. I think the only one in our family who's not tired is Andrew. -ST 7/27/08 - Sunday It has been a quiet day at home. Even after a whole night of undisturbed sleep, we are all still exhausted. In addition to being tired, Jacob isn't feeling very perky. That's to be expected after receiving big doses of chemotherapy. He's been a bit nauseous and feeling weak so he spent most of the day on the couch watching TV. I'm really hoping the delayed side effects of the chemo don't hit him too hard. I worry most about the suppressed immune system. To help with that I give him a subcutaneous injection of G-CSF each day. It doesn't make him happy when Daddy say, "Okay Jacob, time for your shot." Our one and half year old son, Andrew, is talking up a storm. Jacob loves getting him to say the names of all of his favorite comic book and movie heroes. -ST 7/29/08 - Tuesday The last two days Jacob has been pretty subdued and not at all like his usual self. But today he had more energy and was looking better. One of his schoolmates came over and that lifted his spirits considerably (and wore him out a bit). While he was at the hospital he washed his hands quite a bit (under daddy's constant coaxing). They got a little chapped before I realized it and had him start using hand cream to help moisturize. Today I noticed that although the cracking between his fingers has healed, the area is a dark reddish-brown. It is a sign of the effects of chemotherapy and delayed healing. This really got to me. I know that this is something small, but it just reminded me of what is going on inside his body -- the damage the cytotoxic chemicals have caused and his body's attempt to recover. Sometimes I look at Jacob and it really hits me: My son has cancer. It is overwhelming . . . intimidating . . . surreal. My way of coping is to learn as much as I possibly can. It is the way I always deal with things. But I also take solace in knowing that my wife is also a pharmacist, that she and I compliment each other and work well in caring for Jacob and his medical needs. She's my safety net. Tomorrow Jacob goes in for a visit at the Craycroft Clinic as an outpatient at the hospital. It is just a check up to see how he's doing and to check his white count (and the status of his immune system). -ST 7/30/08 -Wednesday Jacob was almost admitted to the hospital today. He had a blood test at the clinic and it showed his white blood cell count to be extremely low. So low that the onologist was considering a blood transfusion because Jacob was also not feeling very well. But it was decided to let him come home and we will watch him very closely. I hope the G-CSF that I give him each day starts doing its thing so that his immune system can start coming back online. Until then we are being very cautious about infections and keep Jacob clear of sick people. Christina and I are understandably anxious! -ST ------ Jacob had an Oncology Clinic visit this morning. He hasn't been feeling very well the past few days. He's been dizzy and very tired. This morning was especially bad. The oncologist was a little worried when she saw him this morning.... mostly because his white blood cell count was almost unmeasurable! They talked about a blood transfusion, then about admitting him to the hospital, but finally decided to let him go home. Scott and I are hovering around him, checking his temperature and trying to get him to eat. Hopefully, he will start feeling better soon. We have another appointment at the clinic on Friday. If he's not doing better I have a feeling we might be back in the hospital. -Christina 7/31/08 - Thursday Jacob spiked a fever of 101.3 last night at 10 pm. He had to be readmitted to Children's Hospital last night. Although we are sad to see him back in the hospital, we caught the fever early and he's receiving antibiotics right now. He still has a fever today, 101.2. Hopefully, this will be a shorter hospital stay than the last time. Scott and I are trying to juggle everything around so Jacob doesn't spend too much time alone in the hospital. Both of our vehicles have issues that require immediate repair. Luckily, I got mine back Tuesday afternoon. The other vehicle should be ready for pickup sometime today. Andrew is doing well through all this. He's really keeping us busy! He has started counting to ten (sort of, we say a number and he says the next). He's healthy and happy and was really enjoying his brother being home again. Scott is trying to juggle his work and staying overnight with Jacob in the hospital. It's not easy because there are people (nursing staff) constantly coming in to the room (checking vitals, adjusting IV rates, etc.). Scott's been great, spending every night (except one) right next to Jacob. I'm the day shift and usually stay until 9:30 or 10 pm. - Christina 8/1/08 - Friday In the evening Jacob was doing a lot better and his white count had come up to almost normal levels. His doctor decided it would be okay for him to come home and he was discharged. It is really, really nice to have all four of us at home . . . together . . . in one place . . . like a family should be. Not only was Jacob thrilled to be "untied" from the IV pole, but when he got home there were several packages and letters from friends and family that cheered him up. Thank you to all of you who have helped to make my little boy happy. -ST 8/2/08 - Saturday Jacob was able to come home again last night (Friday night). His fever broke Thursday morning and didn't come back. The blood cultures were negative, so the physician that did rounds last night said she would let us go home. I've never packed so fast! We practically skipped out to the car! We are sooooo happy to be back home. As long as Jacob stays fever free (and there are no other complications), we should be able to stay home until his next round of chemo (somewhere around August 11th). Jacob has been receiving some wonderful gifts lately. Jacob has also been receiving encouraging cards and emails filled with love. Thank you so much for everything. Jacob just lights up every time he gets a gift or card/email. It really helps keep his spirits up knowing so many people care about him. - Christina 8/4/08 - Monday Three mornings ago Jacob woke up to a pillow full of hair that had fallen out. It really disturbed him even though he had gotten a short haircut last month. He's gotten somewhat used to finding hair on his pillow now, but it has become a reminder that life isn't normal. Today he has a routine clinic visit in the oncology department at Children's Hospital. If his white count is high enough we will discountinue the G-CSF shots that he's been receiving everyday. -ST 8/5/08 - Tuesday Good news! Jacob's white blood cell count is high enough that we are stopping the G-CSF. No more shots from Daddy for a while (last dose received 8/3/08). Jacob is in good spirits and is doing pretty well. -ST 8/6/08 - Wednesday Jacob is feeling pretty good and has enough energy to play once in a while. He still needs to rest a lot, but is in good spirits! Jacob will be going into the hospital Monday, August 11th for his next round of chemo. He will probably be there for 9 days again. Jacob has had a few visitors over the last couple days. They brought Jacob and Andrew gifts and played Star Wars Trivia with Jacob. He loved it. Jacob's aunt sent him an Indiana Jones hat from New York, which he received many comments on while at the Oncology Clinic last Monday. I would also like to mention the wonderful emails and phone calls we have received lately. My cousin even offered to help with Andrew! An extremely sweet gesture. We are very grateful for all the support we have been receiving. Also, I just wanted to say to all of you who have had a birthday or anniversary in the last couple months, I'm sorry if I didn't get a card out to you. I try to stay up on those things and let you know I am thinking of you on special days. Please know that I was still thinking of you, it's just been a bit hectic lately. - Christina 8/11/08 - Monday Jacob is back at Children's Hospital Central California for his next round of chemotherapy. He went to the oncology clinic this morning where they checked his white blood cell count. It was low, but at an acceptable level to start chemotherapy. This round of chemotherapy will be identical to the previous one. He'll start with rituximab (the monoclonal antibody that seeks out the lymphoma cells and brings them to the attention of the immune system). Then two days later he'll have rituximab again plus vincristine, prednisone, and methotrexate. The following day they will start the leucovorin rescue (this neutralizes the effects of the methotrexate), plus cyclophosphamide, doxorubicin, and intrathecal methotrexate and hydrocortazone (via a lumbar puncture). He'll have two lumbar punctures in total during this round, and he doesn't like the sedation (midazolam, ketamine & glycopyrrolate) that goes with it. Forgive me for being overly technical, but the more places I record what Jacob is receiving the greater the chance that he will someday (when he's an adult) be able to pass this information on to other health care providers. All together, Jacob should be in the hospital for 8 to 9 days.  Most
of his hair is now gone. Each morning his pillow is full of
short, half inch long strands of hair. The hair follicles are
dead and the hair rubs off at night. It annoys him because it
itches. I've asked him if he wants me to help him get the
last remaining hair off, but he says no and wants it to come out on its
own.He's been a real trooper the last few days at home. Jacob's been dreading returning to the hospital with the IV pole being his constant companion, the frequent and endless bathroom visits because of the flood of IV fluids he receives, and the subsequent lack of sleep due to these numerous bathroom visits and the periodic intrusion form a nurse or other hospital staff that check on him throughout the night. With all this dread, the anticipation would occasionally get him down. Christina or I would find him teary eyed and moping around. We'd sit and talk with him. He'd tell us how he felt. And we would assure him that it will all be over someday -- just hang in there. And that is what my son does, he just hangs in there. Jacob is a sensitive, shy kid. He cries easily. But although I know him very well, I am amazed by how he bounces back from all that is happening in his life. He has his moments when he gets down, but then he'll accept what's happing and face it stoically. He has an inner strength that is not always apparant on the surface, but when it comes right down to it, it's there and it is strong and it serves him well. I'm proud of him, very proud of him. Jacob enjoys visitors while he is at the hospital. It brightens his day. We ask that you please do not visit if you have been sick or been in contact with anyone who has been ill. He doesn't have much of an immune system right now and we don't want to extend his hospital stay. -ST 8/12/08 - Tuesday Jacob's doing well and resting during his one day break from chemotherapy. Tomorrow the chemo starts up again. -ST ------ Jacob is in the hospital, as planned. He went in Monday, August 11th, and started chemo treatments right away. He's doing well and already looking forward to discharge (probably next Tuesday). Our next scans will be after this round of chemo, so we should know how the tumor is responding in a couple weeks. Jacob has already had a couple visitors this week. Sirena and Matt visited us over the weekend. Forest and Judy came to visit Jacob in the hospital Monday and got to experience the Oncology Clinic first hand. Forest took notes on all the names of Jacob's Star Wars characters and I'm sure there will be a test later. Tomorrow Jacob is looking forward to a visit from one of my friends, Jeana, and her beautiful girls. It is a very special day for our family. One year ago we became a family of four when our adopted son came to live with us. Next year we will do something very special. Unfortunately, this year we spent the day separated from each other. We will make up for it.... - Christina 8/14/08 - Thursday Jacob's lumbar puncture went well. It was the first one that I wasn't present for it. Christina was there in my stead. The lab analysis of the cerebral spinal fluid showed normal results (no cancer cells present). It surprised me to hear that Jacob walked back to his room after the procedure. In the past he was too out of it from the anaethesia to accomplish that. He didn't eat well today, but that is probably due to the after effects of the aneasthesia. Most of the tough stuff is done. Just one more lumbar puncture next week. Today I am finding it difficult to write coherently (to say nothing of my spelling which is never great). It is the effect of sleep deprivation on my brain. The words just don't flow. Sometimes I just stare at the blinking cursor and think to myself "where are the words?" Then half a sentence pops out and the rest of the words seem to be in a jumble after that. This is a sign that I should hang it up for the evening and try again tomorrow when hopefully I have more cognitive energy. -ST 8/15/08 -Friday Jacob had a tough morning. His stomach was pretty upset and he generally didn't feel well. Dr. Crouse came into the room and commented that now-a-days they do a good job treating the chemo-induced nausea, but they can't get it down to zero. It still happens. Instead of throwing up 20 times in a day, now it might happen a few times. That gave me a better perspective on the situation. It is amazing how perspective can help deal with a situation, at least for me. However, it didn't make Jacob feel any better. Throwing up even once was too many times for him. I hope he feels better. Christina took the aternoon shift, I'm going to go into the hospital now and trade with her. A family friend is taking care of Andrew for us. She's been a great help! -ST  8/16/08 - Saturday Jacob's appetite has really diminished. He didn't eat anything yesterday, but today Christina got him to eat a little. I hope his stomach settles so we can get some more food into him. Last night there was a . . . I'll just be direct in saying it . . . there was screw up in the administration of Jacob's IV fluids. It ticked me off! Jacob had been receiving IV sodium bicarbonate that is to run over 48 hours. It alkilinizes (i.e. make less acidic) his urine to keep one of the chemo drugs (methotrexate) from crystallizing in his kidneys. It is not compatible with other IV meds and needs to be temporarily stopped while other IV meds are infused and then turned back on. Well it wasn't turned back on at one point. Three hours passed before I realized the bicarbonate wasn't running. I informed the nurse and it was restarted. Luckily Jacob had cleared most of the chemo drug from his system before this foul up occurred, and the oncologist and myself agree that there will likely be no kidney problems. It was a very lonely feeling the rest of the evening. In the back of my mind was the thought, "I caught this one, but what can happen that I don't catch." Overall, the folks at Children's Hospital have been great, but when it comes to Jacob even the smallest mistake in his health care shakes my confidence. I felt much better when Christina arrived this morning. She is a very competent pediatric pharmacist. -ST 8/17/08 - Sunday Jacob's appetite is returning. We found out that part of the problem was that he is tired of the same old hospital food. I brought in some Burger King chicken tenders last night and after he finished them he was looking for more. Tomorrow he'll have another lumbar puncture. This morning he told me that he really does not like the anesthesia. I told him that he doesn't have to have it but he'd be awake during the whole procedure. He didn't like that idea. We had a short talk about how sometimes there is just no easy way through something. If all goes well tomorrow, Jacob may be discharged from the hospital. Otherwise we are looking at Tuesday as the discharge date. One of Jacob's classmates visited him yesterday. He really perked up having someone his own age to visit with. I wish to say whole heartedly, "Thank you," to everyone who has helped us take care of Jacob's little brother, Andrew. He's a gregarious little boy and has had a lot of fun spending time with other people. I am, however, really looking forward to being home with him again and so is Jacob. -ST ------ Jacob is still in the hospital today. We are hoping to go home tomorrow (Monday, August 18th). Jacob has had a rough couple days during this admission. He had just started recovering from the last big chemo admission when it was time for the next round. He's been very brave and things are starting to get better. He was able to eat a little last night and today he sent me to Burger King for chicken tenders! A good sign! We have had a few visitors this admission. He really likes visits from his friends. He had a big smile on his face when I walked in Saturday morning. That's always nice to see. We are due for a PET CT scan during the next couple weeks. The scan will tell us how the tumor is responding. We should find out the approximate size of the tumor,too. Last time we got great news. We are hoping for more! Things are definitely getting better and we are excited to go home. We will keep everyone updated! Please keep us in your prayers! - Christina  8/18/08 - Monday Jacob was discharged from the hospital today. He's doing well and very happy to be home. On the way home, when he spotted our house from about 1.5 miles away he looked over at me with this HUGE grin on his face and pointed at it. Jacob had really missed his home and his little brother. When Andrew got up from his nap, I said to him, "Do you want to go see Jacob?" He ran calling JJ, JJ into the other room where Jacob was waiting. They were both really glad to see one another. Jacob's immune system will continue to be suppressed for a while. His white cell count is going to drop and reach its low point around Thursday, after which it will begin to rebound. He'll be very susceptible to infections for the next week. -ST 8/19/08 - Tuesday t was nice to sleep in my own bed last night. Jacob enjoyed sleeping in his own bed too, and understandably slept in until around 10 AM. It will take us a few days to get caught up. To help stimulate white blood cell production, Jacob is getting G-CSF shots starting today. We use a numbing agent called EMLA cream so the needle stick doesn't hurt, but he's still not happy to get the shot. -ST 8/20/08 - Wednesday Just a quiet day at home resting and trying to get caught up on work and household chores.  8/21/08 - Thursday Jacob is doing well. We had an oncology clinic visit this morning and they did a few lab tests. His white cell count is doing ok, for now. He has not yet hit the nadir (lowest point) for his immune system since his last round of chemo. That should happen this weekend. We are hoping to keep him home and fever free! Jacob is very excited about a new movie, The Clone Wars. It's just been released into theaters. Scott and I are trying to find a way for Jacob to be able to see the movie (he cannot be exposed to large groups of people because of his impaired immune system). Our next PET/CT scan has been scheduled for September 2nd. We will find out how the tumor is responding to treatment once the scan is reviewed. Jacob's next admission is set for September 4th. We will let you know if this date changes as we get closer. - Christina 8/22/08 -Friday Life is full of strange and interesting twists. In May of this year I came across an email address that I thought might belong to my fifth grade teacher. I wrote to her and she wrote back. It has been many years since I had last seen her and it was good to reestablish contact. We talked about meeting sometime to visit in person. Before we had a chance to, Jacob was diagnosed with cancer and life got very complex. I suggested that perhaps we could visit sometime early next year once Jacob was done with his chemotherapy and in remission. A few days ago I got a call from her saying that the School District asked her if she would take on Jacob as a student for home schooling. I was very happy to hear this! Today she came to our home and worked with Jacob and we had a nice, albeit short visit in person. Not only does it warm my heart that Jacob is being taught by my fifth grade teacher, but I'm comfortable with her because I know through her long experience as a teacher and kind personality that she will know just how much (and how effectively) to push Jacob. I was worried about who we would get as a teacher because Jacob has definite limits to his energy and I didn't want him tasked too hard. It is a great thing that the school district makes teachers available for home instruction to kids in situations like Jacob's. It is even better when that teacher happens to have been one of mine. That is one of the neat things about living in a small rural community -- roots run deep. -ST 8/23/08 - Saturday We are watching Jacob closely today. His temperature is starting to creep upward. Hopefully he won't spike a fever today. If he does, we'll be heading back to the hospital. -ST ------ We have been enjoying a relaxing Saturday. Jacob's temperature was 100.3 at 10 am this morning, so we decided to keep him on the couch watching TV for the day. If his temperature gets up to 101 we will have to call the Oncology department and most likely be readmitted for IV antibiotics. Hopefully, we can avoid that. Otherwise, Jacob has been doing very well. He's had more energy than we thought he would. Our social worker (assigned to us by the Oncology dept.) has been trying to find a way for Jacob to see the new Star Wars movie 'Clone Wars'. Jacob can't go to public places (due to his compromised immune system), so we are hoping we can get him a private (or nearly private) showing. Jacob had his first home school lesson last Friday. His teacher will be coming to see Jacob three times a week at our home. Jacob enjoyed the private tutoring and has already started his assignments. Everyone knows Jacob has been receiving cards full of well wishes, but I thought it might be time to mention that he has received a few cards from a secret friend too. We don't know who it is, but Jacob is enjoying the unsigned cards. Thanks to whoever is taking the time to send them! Jacob loves mysteries! - Christina 8/24/08 - Sunday So far so good, we haven't had to return to the hospital. Jacob's temperature keeps hovering just below the "fever" point which will trigger a call to the oncology department and a likely readmission to the hospital for antibiotic therapy. Poor little guy doesn't have much energy. He was dismayed this evening when he and his mommy sat down to play a Lego's Star Wars game on the computer and he just didn't have the energy to do it. I feel bad for him, but I know this will pass. What weighs on me most is the idea of him having to deal with going back to the hospital -- it is depressing being tied to the IV pole and being away from home. I hope we get through the rest of the evening and night without incident. Tomorrow Christina will take Jacob to the oncology clinic for a follow up appointment. He'll have blood drawn and lab work done. I have a feeling we are now at the white blood cell count nadir and the count will start to go up soon. Then his energy will return and he'll feel better. I used to work at Children's Hospital Central California many years ago as a pediatric clinical pharmacist. Christina and I started working there at the same time, and she still works there now. When we interviewed there we were shown various aspects of the hospital that were designed specifically to make it a nicer place for children. Back then I thought that was nice but I didn't appreciate it like I do now. Each room is for a single patient and has its own bathroom with a shower. There is a fold out sofa bed and parents are encouraged to stay the night with their child. The TV has a DVD/VCR player. The ceilings of many of the rooms have "stars" that twinkle via a fiber optic mechanism. You can request a refrigerator if you desire. The food, although still hospital food, comes in many kid friendly varieties. The walls have murals, there are nice colors and shapes throughout the hospital that are designed to make it a less intimidating place. And for the most part the staff, from doctors to nurses to housekeeping, approach their work knowing that the patient is a child and deserves special, thoughtful handling. Jacob has been visited by hospital volunteers who try to make it a cheerier place just by spending time with him, or by bringing a pet to his room so that he can play with it or see it do a trick. And then there is all the "behind the scene" issues that get taken care of without Christina and I having to put much effort into them (our insurance has approved everything so far without our intervention, the social worker communicated with our school district, etc). I have read about other people's experiences in dealing with cancer and it makes me realize that this hospital, although by no means perfect, is making things go fairly smoothly for us. And my own personal experience with Jacob in this hospital versus when each of my parents spent time in a local "adult" hospital has been vastly different. I always make it known that I am a pharmacist and hospital staff tend to give me more information than they would otherwise. But in Jacob's situation we have been clued into almost every aspect of what is going on. I think it has a lot to do with Jacob being the child of a fellow hospital employee. Christina also used to work as one of the pediatric oncology pharmacists (a very specialized position) and many people in the oncology unit still remember her from those days. We also feel like we understand the workings of the hospital and know who to talk to for whatever issue is at hand. It all adds up to a good situation. That said, it still is not fun to be a patient. But if you have to be a patient or the parent of a patient, then this hospital is a lot better than most. And that has made dealing with Jacob's cancer just a little bit easier. -ST 8/24/08 - Sunday (night) Jacob's temperature went up to 102.1 at 9 PM. We called the hospital and they said bring him in. He was really upset when we told him we're going back to the hospital. He cried for a short time. Then Jacob does what he normally does and accepted it with a grim resolve. -ST ------ Although we fought gallantly, Jacob spiked a fever this evening ( at 9 pm) of 102.1. Right now he is on his way to the hospital with Scott. We anticipate this to be a short admission (no longer than a day or two), still he was quite upset about going back to the hospital so soon. - Christina 8/25/08 - Monday Jacob is back in the hospital. I took him in last night because he spiked a fever. This morning I got his lab report and his white blood cell count was 0.8 (normal range 5.0 - 14.5) and his ANC was 56 (normal is 1500 and up). He basically has no immune response right now. Hopefully the G-CSF will start stimulating white blood cell (WBC) production real soon. Currently I'm at home with Andrew trying to get some work done. Christina came into the hospital this morning to relieved me so I could come home. It is probably best that he not have visitors while he is immunocompromised. -ST ------ This afternoon Christina discovered that Jacob has some mucositis and isn't eating well because of it. Hopefully this will go away and his appetite will return. -ST 8/26/08 - Tuesday We are still at the hospital. Jacob has developed mucositis, defined as the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. He's been in so much pain that it hurts to talk and move his mouth. He hasn't been drinking or eating. Last night we had to have the nurse give him morphine (narcotic pain reliever) so that he could eat a little jello. We are hoping this passes quickly, but we will most likely be in the hospital for the rest of the week. We are hoping that we can get him home for a few days before the next round of chemo starts (Sept. 4th). We are still working on the possibility of Jacob seeing 'Clone Wars'. I will keep you updated. I think that brings everyone up to speed for now. Sorry if I'm not making the most sense today.... very tired. - Christina 8/27/08 - Wednesday Jacob was discharged from the hospital this afternoon. The G-CSF kicked in and his white blood cell count and ANC skyrocketed. His blood cultures were negative (i.e. not growing any bacteria) and he hasn't had a fever since Sunday night when the antibiotic was started. Once his immune response returned the mucositis went away. He's really happy to be home and looking forward to getting some good quality rest (and so is his Dad). Christina is sick today. It hit her last night. We think it is some intestinal bug. She's having to keep her distance from Jacob and we are all washing our hands like maniacs. -ST 8/28/08 -Thursday Jacob's in good spirits today and doing well. He's a little pale and low on energy. This is probably due to his red blood cell count being a little low (he's slightly anemic). He's lost all of his dark hair on his head. All that is left is a sparse covering of blond, half inch long hair. He's happy to see his little brother, Andrew who is now singing parts of the song "Twinkle, twinkle little star." And Jacob is really happy to play with his toys at home. Another thing that makes him happy is being done with G-CSF shots. He received his last one on 8/26/08. The next two rounds of chemotherapy do not call for the use of G-CSF. When I told Jacob that Daddy won't be giving him anymore shots he was stoked. (Note: we used EMLA cream to deaden the area where he'd get the subcutaneous injection so that he wouldn't feel much of anything. It was the idea of getting a shot that caused the trauma, not the shot itself.) Jacob's next round of chemo is slated for September 9th. Christina is feeling a lot better. Not yet 100%, but getting there. I, on the other hand, am a zombie. Last night was the first good sleep I've gotten in awhile and I woke up exhausted. I can't remember feeling this tired since . . . . Well that's the other thing I'm dealing with . . . I've developed a cumulative sleep deficit which has played total havoc with my short term memory. I feel like I've been in a psychology experiment. I start walking to another part of the house to get something and not only do I forget what I was looking for, I forget which room I was heading to. Sleep is such a beautiful thing. -ST 8/29/08 -Friday It's been a busy week for Jacob! When he got out of the hospital Wednesday afternoon he had a few visitors waiting for him at home. Jacob's next round of chemo has been moved to Tuesday 9/9/08. He will be admitted to the hospital for daily chemo (sometimes multiple doses a day) for about a week. - Christina 8/30/08 - Saturday Today Christina is going out of town for a baby shower. Tomorrow she will pick up her sister who is flying in from out of state. In the mean time I'm holding down the fort and taking care of my two boys. Jacob is getting stronger each day. Today he had a short visit from a schoolmatewho made a nice video of some of the kids from Jacob's old school. He enjoyed it! -ST 9/1/08 - Monday Tomorrow Jacob has a combination PET / CT full body scan. We were very happy with the results of the previous PET / CT scan which showed a lot of tumor shrinkage after the first round of chemo. Since then Jacob has had two heavy rounds of chemotherapy, and we are hoping for dramatic reduction in the tumor located in his nasopharynx. His appetite his minimal. Sometimes Christina and I feel like we are pounding our heads against a brick wall when it comes to getting him to eat. But on the other hand we are also mindful of what his digestive tract might be dealing with. He's had one painful episode of mucositis where the inside of his mouth hurt. The same thing could be happening anywhere else along his alimentary canal which would effect his appetite. So we don't want to push him too much, but we do need to push him enough to keep him healthy. -ST ------ Jacob is doing well. He's been having some trouble eating, but otherwise things are good. He's had a lot of visitors this past week. It's been nice for Jacob to visit with family. Jacob had a friend from school visit last weekend, too. She brought a DVD with Jacob's classmates saying "Hi" to Jacob and a new Nintendo DS game (Pirates of the Caribbean), both of which he greatly enjoyed . Jacob's next admission is slated for Tuesday September 9th. We should be in the hospital for about a week. A dear family friend will come stay with us and help with Andrew for most of the admission. We are really looking forward to seeing her. Last time she came to help she brought the most amazing meals for us! Jacob's next PET/CT scan is scheduled for tomorrow, so we should have the results in the next week. - Christina 9/2/08 - Tuesday Pot Roast! Last night we had pot roast and Jacob went back for seconds. He loved it. It made me quite happy to see him eating well. I think his appetite returned when he had something new to eat that he really likes. We've also put him back on Pepcid (helps reduce his stomach's acidity) and ondansetron. Together these drugs probably make him feel better about eating. The PET / CT scan went well this morning. It will be a few days before we get the results. Tomorrow we are going to see Star Wars: Clone Wars. Jacob has really been wanting to see this movie. He's a huge Star Wars fan as many of you know. We've waited until his immune system is at its strongest and we're going early in the morning on a weekday so that the theater will most likely be empty. -ST 9/3/08 - Wednesday We saw the new Star Wars movie this morning. Jacob really enjoyed it. He's been wanting to see it since it came out on August 15th. There were only two other people there and they were across the theater from us. It was almost like having the theater to ourselves. I'm scarmbling to get the surge of work that piles up at the begining of each month completed before Jacob goes back to the hospital. I stayed caught up all of the way through the last admission. I hope I can do the same this time -- it helps keep my stress level down. -ST 9/5/08 - Friday Sometimes I am reminded that life goes on for others while my family is battling Jacob's cancer. Christina and I have been so intensely focused on the tasks at hand that it is easy to lose sight of the important things happening in the lives of our friends and family. Sometimes those happenings are joyess occasions such as when our dear friends had their baby not long ago. Other times they are scary such as when my cousin found out that he is battling Q Fever which is caused by a particularly nasty intracellualr bacteria called Coxiella burnetii. Or when my friend John who lives in Colorado makes an emergency trip to home because his father is gravely ill and in the hospital. I think of you all quite often. Forgive me for not staying in closer touch. And the same goes for all of my other friends and family. Christina is in Sonora for a friend's wedding. She'll return tomorrow evening. Until then, it is just me, Jacob and Andrew at home. -- ST 9/6/08 - Saturday Jacob's doing well. He doesn't always have a lot of energy, but otherwise he doesn't have any major complaints. Today we are having a quiet day at home. I like it when there is not much activity at our house, it gives Jacob time to rest or play quietly. Jacob has a clinic visit on Tuesday, September 9th. If his blood counts are acceptable (which they should be) then he will be admitted for his next round of chemotherapy. It will start out with rituximab and methotrexate. The following day he'll receive cytarabine (Ara-C) which is infused over 24 hours for the next five days. He will have two lumbar punctures (with intrathecal infusions), one with methotrexate and one with cytarabine. Then hopefully he will get to come home after a total of seven days in the hospital. Jacob has never had cytarabine before so I don't know how well he will handle the side effects. This worries me because it is a potentially nasty chemo drug, but on the other hand he's done fairly well with all the rest of the drugs. I'm really glad we have health insurance. When we received the statement for Jacob's second round in the hospital it floored both Christina and I how much the hospital charged. The insurance company only allowed roughly half of it (for that visit). --ST 9/7/08 - Sunday Another quiet day at home. 9/8/08 - Monday Jacob lost a molar this morning. It's been lose for sometime and finally came out. It was somehow oddly nice, even refreshing, to be reminded that through all of this Jacob is still a normal 11 year old boy who is losing the last of his baby teeth. Tomorrow he goes back to the hospital. He's been enjoying his last day of "freedom" before returning. I hope it will be a smooth hospital stay for him. And we should find out the results of the last scan. Although I look at this next round of chemotherapy with some trepidation, I'm also seeing the light at the end of the tunnel -- this will most likely be his second to the last round. I have sad news, the father of my best friend passed away this morning. I have a fond connection to him not just because he is my friend's father, but also because he taught me drafting and wood working in high school. I will miss him. Today Jacob had more home schooling with his teacher. He got tired toward the end (they were working on math thought problems), but it was good for him to be pushed a little. We face the same challenge with school work as we do with his eating. He needs to do it, but he does have limitations in energy. Sometimes those "limitations" are a little exaggerated by a bit of drama. Luckily, I think she has a good feel for how much to push. Before she left, we had a nice talk about losing important people in our lives. She lost her husband several years ago and she also knows my friend's father. I it was good for both of us to share our feelings with one another. --ST 9/9/08 - Tuesday Jacob is back in the hospital for his next round of chemotherapy. 9/11/08 - Thursday This morning Jacob was doing well. He was tired because he didn't get sound sleep. There were the normal nightly interruptions of hospital staff coming in to the room to check on him or administer meds or draw blood for labs or measure his urine output, etc. The most annoying interruption, however, happens when an alarm goes off on one of the medication infusion pumps. Jacob tries to ignore it while I get up, check to see what the alarm is about, press the call button to summon a nurse, and then open the door to his room just a crack so that the staff can hear the beeping in hopes of getting a little quicker response. Perhaps the most annoying alarm is on a syringe pump that insists on beeping for a short time when it is half way through the infusion (Jacob and I really don't need to hear this and his nurse is out of ear-shot). Yesterday morning Jacob had a bout with some nausea and vomiting. We got through it with the help of some low dose ativan (a sedative). This also helped him deal with anxiety related to the lumbar puncture (LP) that was coming later in the morning. The LP went well and Jacob was sleepy the rest of the day. Last night the cytarbine (ARAC) was started. He will receive a continuous infusion for five days (ending the night of September 15th). We got the report for the last PET / CT scan conducted on 9/2/08. The tumor has shown a marked reduction in size (and metabolism). The oncologist says we are on track. This is a good thing. Part of me, however, wishes the tumor was completely gone. I just have to remind myself to be patient. The previous scan showed a nasopharyngeal mass 1.7 x 2.8 x 1.5 cm in size. The most recent scan showed a decrease in size to 1.5 x 1.0 x 0.7 cm which is roughly an 85% reduction in tumor size (from the previous scan on 7/18/08). The very first CT scan that Jacob had on 6/25/08 showed a tumor of 3.7 x 4.1 x 4.9 cm. When I did the math I was happy to see that we have achieved a 98% reduction in tumor size since Jacob's original diagnosis. I think back to how utterly scared Christina and I were when we first found out Jacob had cancer and now see how far he has come in two-and-half months . . . I truly am thankful we live in this period of time when modern medicine has turned a diagnosis of cancer from a probable death sentence into something that can be fought and even -- hopefully -- cured. But even at that, I will feel better when there is no detectable trace of cancer in my son. But in the back of my mind I know it only takes one cancer cell surviving the onslaught of all of this chemotherapy to start the whole disease process over again. Only time and vigilance will tell if we get them all. -ST ------ We have the results of Jacob's latest scan. Everything looks great! The tumor has decreased in size 98% overall (compared to the first CT in June) and 85% since the last CT/PET scan (in July). We are very happy with these results, to say the least. A close family friend got married last weekend and I was fortunate to be able to attend. It was a beautiful wedding. Jacob was re-admitted to the hospital last Tuesday. He will be here for about 8 days. This round of chemo includes a new medication for us (Jacob has not received it previously). So far he is doing ok with it. He hasn't been eating as well, but that happens a lot when we are in the hospital. The new medication, called cytarabine, is being infused continuously for 5 days, so Jacob will be connected to the IV pole (Jacob has named this pole General Arnie Peds) all the time. In the past he has been able to be unhooked for a few hours a day. Being attached constantly is a little hard on Jacob, but it is necessary. Overall, he's doing very well. Last Wednesday Jacob was able to see the new Clone Wars movie. The theater gave us free tickets to an early morning show. Everything worked out well. There were only 2 other people in the theater. Jacob was sooooooo happy to see it! - Christina 9/12/08 - Friday Jacob had a rough day today. He didn't feel well and was nauseous. Some ativan helped but he ended up doing a lot of sleeping (ativan is a sedative). In the evening he had a temperature of 101. He received Tylenol and his fever broke in about an hour. He perked up a bit after that. Blood was drawn and is being cultured to see what is causing the fever. In the mean time he is receiving ceftriaxone (an antibiotic). His appetite is minimal but I got a little apple juice down him. It is hard for Christina and I to see our little boy lethargic. This round of chemo is hitting him pretty hard. I'm not sure if it is the medication, the psychological effects of being in the hospital again, or the cumulative toll that the last two and half months have taken on him. He'll get through this, but it really yanks on my heart to see him just lay in bed and not even be interested in TV (specifically the Disney Channel). --ST 9/13/08 - Saturday This morning Jacob's temperature was 103 and his blood pressure 92/38. This is low blood pressure even for him. When he got up to go to the bathroom he complained of feeling dizzy. He just wants to lay in bed and sleep. We've got a sick little boy on our hands. I hope the antibiotic he received last night is effective for whatever is making his temperature run high. It takes time to culture his blood and hopefully we can find out what the infective agent is so that a specific antibiotic can be administered. In the mean time he is being empirically treated (he gets a broad spectrum antibiotic which works against a lot of different types of bacteria). --ST 9/13/08 - Saturday (Afternoon) Jacob's not doing well. He still has a temperature of 103 and has bouts of trembling (shivering, chills). His blood pressure is still low, although it has increased a little after he received a fluid bolus (900 ml of IV normal saline over 3 hours). Dr. Crouse (one of the oncologists) has ordered a chest X-ray just to make sure we don't have an infectious process going on there (his chest sounds clear otherwise). He's had diarrhea which is greenish in color. I'm suspecting this might be an intestinal bug. Christina got a stool sample and the lab is checking it. I know Jacob will be okay in the long run, but it is tough to watch my little boy getting so beaten up. Regarding the chemotherapy, Jacob cleared the methotrexate he received on 9/9/08 from his system pretty fast like he has in past rounds. He will receive the last of 12 doses of leucovorin today. He is continuing on the cytarbine which is being administered continously until Monday night (9/15/08). --ST 9/14/08 - Sunday Jacob is still not doing well. He is no longer running a fever and his blood pressure is better. However, he's got a pretty bad case of diarrhea (green discharge with strong smell) which is not making life easy. We have him well hydrated with IV fluids but he is not eating much if anything at all. Last night he was started on metronidazole, an antibiotic that is effective against Clostridium difficile. I suspect this is the bacteria that is causing the problem, although we haven't gotten back the culture results yet (it could be any of several other infective agents). C. difficile is a nasty anaerobic bacteria that flourishes when broad spectrum antibiotics knock out the normal intestinal flora (and Jacob hasn't been eating yogurt since he started the cancer treatments). Hopefully we can get this under control soon. If we were dealing with diarrhea by itself I know we could easily beat it. But the cancer and chemotherapy issue compounds things significantly (i.e. Jacob's declining immune system, previous antibiotic use, and delayed healing). He'll pull through, but Christina and I are understandably anxious. --ST 9/15/08 -Monday Jacob is starting to respond to the new antibiotic (metronidazole, for those that are interested). We are still waiting for cultures, as nothing has come back positive yet. Jacob has a little more energy today and is able to watch TV and play Nintendo again (of course, that means I am playing too). Today is the memorial service for one of Scott's dearest friend's father. Our thoughts and prayers are with the family. Scott's friend lives in Colorado and he visited Jacob in the hospital multiple times on his last trip to California. Yesterday my Mom arrived at our house to help with Andrew. It's nice having someone able to take care of him 24 hours a day. It allows me to be able to stay later at the hospital and, occasionally, for Scott and I to have some overlap time when we switch places. It's the only time we get to see each other! Initially, we were supposed to go home from this round of chemo on Tuesday (tomorrow). As of today there are no plans for discharge. Jacob will be staying here in the hospital for (at least) a few more days. - Christina 9/16/08 - Tuesday Jacob came home from the hospital today. He hasn't had an elevated temperature for two days and seems to have the diarrhea under control. This morning he had another lumbar puncture (LP) with intrathecal administration of cytarabine and hydrocortisone. After the procedure, Dr. Crouse said she wanted to see how he would respond to the intrathecal chemo. If he could eat and keep it down she would consider sending him home. Jacob got excited at the prospect of coming home and ate better than he had during his entire stay. It also helped that Dr. Crouse went light on the anaesthesia during the LP which allowed Jacob to bounce back better. His immune system is close to its low point (nadir). Hopefully we can keep him well and not have to return to the hospital soon. --ST |
| 9/17/08
- Wednesday Everyone is tired and trying to get caught up on our sleep. Jacob is doing okay and happy to be home. 9/18/08 - Thursday Jacob is in good spirits but very tired. Some of that is due to the rigors of staying in a hospital, but most of his lethargy is due to having a really low red blood cell count (which is chemo induced). He goes back to the hospital tomorrow for a clinic visit. I'm eager to see what his blood counts (CBC) are. Hopefully he can avoid getting a transfusion. --ST ------ Just a quick note to let everyone know that Jacob came home Tuesday afternoon. Tomorrow (Friday) we have a clinic appointment and we will consider giving Jacob a transfusion. Jacob's hemoglobin has been very low, 8.6 g/dl at the time of our last lab draw (Tuesday morning). The normal hemoglobin range for a child would be 11.5 to 13.5 g/dl (for our Children's Hospital lab). A low Hemoglobin level indicates anemia, meaning Jacob's blood is having a hard time transporting oxygen. Jacob's doctors want to give him a transfusion of PRBC's (packed red blood cells). This issue has been weighing on Scott and me for the better part of the week. Otherwise, Jacob has been doing pretty well since arriving home. He's been able to spend a couple days with his Grandma, who was helping us with Andrew during the last few days of Jacob's admission. - Christina 9/19/08 - Friday It's been a busy night at our house..... Jacob spiked a fever early this morning. He came into our room at about 4 am with a fever of 103.2 F and dizziness. We called the oncologist and a few minutes later we were packing for the hospital. I just talked to Scott (at the hospital with Jacob right now) and he says Jacob's hemoglobin is 7.9 g/dl and his white blood cell count and ANC were very, very low. Jacob is on antibiotics and fluids. I'm sure the oncologist will order a transfusion very soon. - Christina ------ Jacob received one unit of packed red blood cells this afternoon. He tolerated it well and didn't seem to have any infusion reactions. He's pretty wiped out and is doing a lot of resting. This is probably due to what little energy he has being diverted to fighting the infection that's raising his temperature. --ST 9/20/08 - Saturday Lab results show an improvement in Jacob's hemoglobin, red and white blood cells, and neutrophils. It is not a large improvement, but at least it is in the right direction. However, his platelet count has gone down. If his blood culture comes back negative tomorrow and Jacob seems to be doing okay, we may be able to bring him home. Something dawned on me today. I was wearing pants instead instead of shorts. All summer long I wore shorts when I stayed the night at the hospital with Jacob. But last night I wore pants because it was getting cooler. It made me realize that the weather has changed. Although not yet official, Fall is upon us and Jacob spent the whole summer of his eleventh year of life dealing with cancer. It is a summer that he'll never get back. We had some special things planned like his first backpacking trip into the Sierra Nevada Mountains, and a vacation at the ocean, among other things. In some ways I feel sad that he didn't get to do these things -- he'll only be an eleven year old little boy once and he had to spend this summer in the hospital receiving chemotherapy or at home recovering from it. It wasn't much fun. There have been times when I could see it in his face: a certain sadness because he didn't have more energy, or couldn't be doing the things he wanted to, or was missing his friends. Christina has attempted to distract him from these feelings by building up anticipation about some Star Wars trinket or action figure that she found on eBay and would soon be delivered in the mail. In California's Central Valley we don't have a long Fall. It tends to be a short transition from Summer to Winter. By the time we are done with the chemo treatments and Jacob has recovered enough to start feeling normal again, he will have also missed out on the Fall Season. But on the other hand, what Jacob is enduring now is necessary for his survival. It is a small price to pay for being able to live. Christina and I understand this. We have explained it to Jacob in several different ways. He gets it and accepts it with a grim resolve that makes me proud. But when it is all said and done, my little boy still misses how his life used to be and he realizes that he'll never get this summer back. And in some way he will never get back that innocence he had before being diagnosed with cancer. --ST 9/21/08 - Sunday Although we were hoping Jacob would be able to come home today, it is not to be. Jacob received a blood transfusion on Friday (PRBC's) and started to feel better yesterday (Saturday). He was even able to eat a steak and shrimp dinner last night (I picked up to-go food). This morning his CBC shows that his ANC AUTO is 100 (normal is greater than 1500/mcL) and his platelet count is 15 (normal range is 145-400 10e3/mcL). The oncologist is considering another transfusion today, this time of platelets. We'll let you know how it goes. - Christina ------ Because Jacob has dangerously low levels of platelets (the blood element that clots) he will receive a transfusion today. His immune response (measured by ANC or Absolute Neutrophil Count) is next to nothing. Rather than running the risk of bringing him home and having him pick up another infection, he will be staying in the hospital until his blood counts come up to a safe level. Otherwise he is doing well and is in reasonably good spirits. We have discovered that he does have an appetite for food . . . as long as it is not from the hospital. --ST 9/22/08 - Monday Jacob is feeling okay and is in reasonably good spirits. His immune system is still severely depressed although there was a slight increase in his ANC. He will remain on antibiotic therapy. His platelets are in a good zone today after receiving a transfusion of platelets yesterday. His hemoglobin and red blood cell count are a little lower than yesterday's. The plan is for him to remain in the hospital until his ANC reaches the 300 to 500 level. As of today Jacob has spent a total of 40 days in the hospital (plus numerous clinic visits) since he was diagnosed with cancer. That's almost 1% of his life. --ST 9/22/08 - Monday (Evening) I'm sitting here in the hospital watching Jacob sleep. It's been a difficult couple of weeks for our son. Last week's chemo really hit his immune system hard. He's spent most of the last 2 weeks lying down in his hospital bed and feeling terrible. Today he tried to take a walk, but only got part way down the hall before we had to turn back. He was so weak and exhausted he almost didn't make it back into bed. On a more positive note, we have found a way to get him to eat...... bring in take-out food. All Jacob has to say is "I'm feeling a little hungry" and I'm jumping in the car to go get anything he thinks he can keep down! Yesterday I went on a Pringles run. Jacob's blood counts are still very low. Our oncologist says that Jacob will most likely be here at the hospital for a few more days. He is still receiving an antibiotic because it is possible that his body is fighting an infection which is making his recovery slower than we have seen previously. Scott and I are a little worried, but Jacob is getting the best care from amazing people. We are very lucky. Fortunately, we have my mom helping us right now. I don't think she will be able to stay too long, but we are very grateful for the help. I'm sure Andrew really appreciates spending time with his grandma, too! I will be sending out another update is a few days. Hopefully, we will know when Jacob can go home by then! It will be nice to be home.... for all of us! Scott and I might actually get to spend more than a few minutes in the parking lot together (what we do when we trade places). - Christina 9/23/08 - Tuesday Jacob's ANC hit zero this morning. The oncologist says he has a low level infection that is pulling any neutrophils he is producing out of his vasculature and that is why nothing is showing up in his blood (i.e. ANC=0). Basically he is VERY immunosuppressed because of the after effects of the chemotherapy and a mild infection that is grabbing up what few neutrophils are being produced. We are being told, "Just be patient, Jacob will bounce back but it will take time." That's not easy to do when our little boy is laying in bed drained of energy. There was a small incident last night with Jacob's IV line being clamped off. He didn't receive IV fluids for 1.5 hours (and had been hep-locked for an hour before that). The infusion pump usually catches such issues and sounds a warning alarm, but for whatever reason didn't last night. I discovered the issue and brought it to the attention of his night nurse who unclamped the line. I expect a pretty high standard from the nurses in the oncology unit and for the most part they surpass it. But once in awhile we get one that is not as diligent as I would like. These few make me nervous. In this case spending a few moments double checking the lines would have avoided the problem. --ST 9/24/08 - Wednesday Last night Jacob spiked a temperature of 103. We gave him Tylenol and the fever went away quickly and never returned. His ANC is still zero, but his hemoglobin and red blood cell count are starting to inch upward, while his platelets are holding steady. Why did he spike a fever? No one knows for sure, but because his immune system is severely depressed the doctor decided to start him on an additional antibiotic called vancomycin. This is an antibiotic that I consider to be a "big gun." It is a powerful drug that is effective against some of the more resistant bacteria. It is being used as a precaution because Jacob can't really mount a significant immune response to an infection until his ANC is higher (if he got a significant infection now it could be life threatening). Vancomycin has some not so pleasant side effects, one of which Jacob immediately experienced. It is aptly named Red Man Syndrome and is caused by a massive release of histamine in direct relation to how fast the drug is being infused. My poor little boy's head turned bright red and started to itch. He received some IV benadryl which counteracted the effect and gave him some relief. I've known about this side effect since I was in pharmacy school, but had never seen it first hand. I really wish I didn't have to see it happen to my own child. To keep it from happening with subsequent doses it is being administered more slowly (2 hours vs 1 hour) and Jacob is premedicated with benadryl. Some times Murphy's Law strikes just to make things more interesting (add sarcasm here)! Andrew developed diarrhea and vomited last night. This morning Christina called me and said she felt like she was getting the flu. That is the last thing that Jacob needs to come in contact with so I stayed at the hospital so that she could stay away. As of this evening both of them are doing a lot better. Thank goodness Christina's Mom was there to help take care of them. Tomorrow we need to decide if Christina is well enough to come in and relieve me (she would wear a gown and mask). She's a pretty tough person, but sometimes it is hard to get her to slow down and take care of herself. But aren't all good moms like that? --ST 9/25/08 - Thursday It is only a small increase but you learn to be greatful for such things: this morning Jacob's ANC was 42. That is still low, but at least it is not zero (normal minimum level is 1500). I'm hoping and expecting that tomorrow it will be even higher. Christina is doing a lot better. She got some rest last night which made a big difference in how she felt. She came to the hospital this morning and relieved me so that I could go home for awhile. When I came back this evening to switch places with her I found Jacob in great spirits. He had been hep-locked for a few hours today and he went for a walk with Christina around the hospital (wearing a mask). There was a fund raiser going on in the main entrance of the hospital and somebody offered Jacob a toy from a basket of goodies. Jacob rummaged around in it and didn't find anything he liked, so he decided instead to get something for Andrew. Jacob was excited to tell me about what he got Andrew and I was very pleased to see my little boy returning to normal. These last few days have been hard on him and it is nice to see him perk up. --ST 9/26/08 - Friday Andrew was sick for a couple days... we are thinking it was just a little intestinal virus. It was great to have my mom here helping us during this time! I don't know what we would have done without her! Jacob is starting to feel a little better. Our oncologists have started him on another antibiotic (vancomycin). There is a possibility that Jacob had a mediport site infection. His blood counts are starting to increase. Always a good sign :) Today his ANC is 80 /mcL and platelets are 188 10e3/mcL, but the RBC's and hemoglobin are decreasing (not good, but they are not dangerously low yet). We are hoping to be able to come home on Monday or Tuesday. (Hooray!) - Christina 9/27/08 - Saturday Jacob's feeling a lot better. This morning's labs showed his ANC at 299, platelets in a normal range, and red blood cells slightly lower than the day before. Last night he developed an appetite and was snacking all the way till bedtime. If he keeps producing neutrophils (as measured by the ANC) like he has, then I'm guessing he'll be discharged from the hospital in the next day or two. When Jacob was admitted for his first round of chemotherapy back in July, I became aware of some construction going on near the hospital. It is an addition to one of the administrative buildings. Back then it was nothing more than several lone steel girders sticking up in the air. Now the building has its exterior near completion. Each day as I walk out to the parking lot to get into my vehicle to come home, I see the construction progress and it reminds me of how much time has passed. My family and I have been at this for awhile . . . --ST ------ Jacob is still in the hospital. It's been a rough 2 1/2 weeks, but Jacob is starting to feel better! He's eating and able to play and walk around more. Hooray! Our oncologists are thinking he might be able to go home Monday or Tuesday. This afternoon a gentleman came by and gave Jacob a gift. His name was Willie and he had just won a race (called the Smokey Bear Run). He came to children's hospital to share his experience with a child battling cancer. He chose Jacob. He talked to us and gave Jacob the trophy he had just won and a t-shirt. It was very sweet. People have been wonderful to Jacob! Andrew is changing everyday! He is very talkative now. He answers questions and can have little conversations with you. It's really cute. That little boy is fascinated by tractors! Today we had to stop everything to watch 2 swathers in the field behind our house. - Christina 9/28/08 - Sunday Jacob's ANC dropped to 168 this morning. I didn't like seeing a decrease, but it is most likely a temporary thing and he should resume his upward trend soon. The vancomycin was stopped (because of negative blood cultures) and a couple meds are being switched to the oral form in anticipation of being discharged from the hospital in the next day or two. --ST 9/29/08 - Monday Jacob's ANC is 270 this morning. He's feeling pretty good, but had some nausea and vomitted once. We restarted the anti-nausea medicine (ondansetron) which had been stopped yesterday. Jacob seems to be handling this hospital stay better than Christina and I. We're tired and miss home and having our family all in one spot. The current plan is to discharge him on Wednesday. He'll be home for a week and then return for his final round of chemotherapy sometime around October 8th. This next round is identical to the previous one. Jacob's constitution will not be at the same level as last time so he is probably going to get hit even harder. Poor guy, this is going to be tough. --ST  Jacob & Dr. Ozeran 9/30/08 - Tuesday Great news! Jacob's ANC is on the rise (580 today) and our oncologist says we can head home tomorrow! Jacob is doing really well. He's very happy about going home! We will have about a week at home before we go back to the hospital, so Jacob will be able to recooperate before we repeat this very difficult round of chemo. We are expecting to be in the hospital for 3 weeks again, just like this round. - Christina 10/1/08 - Wednesday Jacob is HOME!!!! Hooray!!!! His ANC was 780 today and he's feeling a lot better! He's playing and laughing..... wonderful sounds. We are due for another PET/CT scan on Thursday, October 9th. After the scan we will be starting the next round of chemo. This next round is a repeat of the round we just finished. We are preparing for another 3 weeks in the hospital (most of October). I have purchased a few Halloween decorations for the hospital room and I'm hoping that they we help keep Jacob in a happy Halloween mood. Most of you know that Halloween is my favorite holiday and I've shared the love with my kids. We are hoping to get out of the hospital by October 31st, but we know there is a chance we won't be able to. Thank you for your continuing love and support. Jacob really enjoys the cards he receives in the mail. - Christina  10/2/08 -Thursday It has been a busy day at home trying to get caught up on all of the work that has accumulated. Jacob is doing well and is happy to be home. --ST 10/3/08 - Friday Jacob's doing well. He doesn't have a lot of energy, but considering everything that he has gone through, he's in pretty good shape. Jacob's teacher came out this afternoon to do a little home schooling with Jacob. Christina and I are very busy trying to get caught up. Not an easy thing to do when your exhausted. --ST ------ Jacob is doing good, no fevers and no nausea. He's just been a little tired. Earlier this evening he was able to watch the new 'Clone Wars' cartoon on the Cartoon Network at his Grandma's house. We don't have cable so we drove him over to Grandma and Grandpa's (He's too weak to walk, even though it is only a block away. He really enjoyed it and spent the next hour telling me all about it. I would like to send a great big THANK YOU to the wonderful family members who have helped us so much the past few weeks by watching Andrew. My Mom has been great, spending a week or more at a time with us. Jacob and Andrew's aunt has been very generous with her time, too. Another amazing person has been Jacob and Andrew's cousin who has helped us keep our house clean. Another amazing person these past few weeks has been Jacob and Andrew's Grandma Toste. She has made many trips to the hospital to visit Jacob and bring him little presents! She always brightens his day and makes him smile! Thanks Grandma! We know it isn't easy to walk all the way into the hospital for you, but you do it anyway! So many people have taken the time to write letters or emails, too! We appreciate all of you! We are so lucky to have you! - Christina 10/7/08 - Tuesday To help raise Jacob's spirits, Christina arranged a short visit today to Jacob's old school so he could see some of his classmates. He was very happy to see them. Only one more day at home before we return to the hospital. After being home for a week, Christina and I had recovered enough to just start building momentum toward getting everything done that we need to do. So much work, so many tasks, so little time and energy. --ST 10/8/08 - Wednesday Jacob is dreading returning to the hospital. He's been pretty emotional about it. Anticipation is often Jacob's greatest emotional burden. Early tomorrow morning Christina will take Jacob in for his PET/CT scan. This is a combination scan with two components. The first is a CT scan which you can think of as a three dimension X-ray. The second is a PET scan that involves Jacob receiving radioactive glucose. Glucose (a sugar molecule) is taken up by cells that are metabolically active (the more active the more glucose that is take up). The scan detects the level of radiation in the various tissues of the body. Cancer cells rapidly divide and are very metabolically active so they would absorb more radioactive glucose than the average surrounding tissue and hence show up as a "bright spot" on the PET scan. The expectation is that Jacob's tumor should be gone by now. Here's the problem: Jacob's tumor is in the posterior nasopharynx and is adjacent to the adenoids. Any germs or environmental irritant that the adenoids pick up will make that tissue react and become more metabolically active and hence absorb more glucose. There may always be a slight background glow on a PET scan in this area which will make it impossible to tell if the tumor is completely gone. This last round of chemotherapy is designed to get any stray cancer cells that might still be hanging around. After the scan, Jacob will go to oncology clinic for some lab work and then be admitted to the Craycroft oncology unit at Children's Hospital Central California. This coming round of chemotherapy will be identical to the last one (see 9/6/08 entry). Physically, Jacob is not starting out at the same point as last time so we expect him to get hit pretty hard by the chemo. Our poor little boy knows this and it doesn't help his emotional outlook. --ST 10/9/08 - Thursday Jacob was supposed to be adimitted to the hospital today for his next round of chemotherapy. His blood counts were not high enough so the admission is being delayed until his white blood cell count is at an acceptable level. We've only had one week at home and it will be nice to have more time together before plunging back into a long hospital stay. But on the other hand it is important to stay on tract with the chemotherapy. Each round of chemo reduces the number of cancer cells in Jacob's body along with other normal fast growing cells (like immune system cells, hair follicles, mucosal cells, etc). Then he's given a break so that his body can recover. The problem is that the cancer cells start recovering too and we don't want them to increase in number very much. It is a balancing act: hit Jacob hard enough to take down as many cancer cells as possible without completely destroying his other vital systems. Then let him recover enough so that he can withstand the next round, and hit him again with chemo. Continue this cycle until the cancer is gone. I'm anxious to see the results of today's PET/CT scan. --ST 10/9/08 - Thursday Evening Jacob's ANC today is 590. That is lower than it was when he was released from the hospital a week ago. We don't know the reason for the dip. Perhaps he picked up a mild infection and that is "using up" his neutraphils. Whatever the case, we are going to give him an injection of G-CSF tonight and tomorrow to help stimulate white blood cell production. Jacob is pretty upset that Daddy has to give him another shot. --ST ------ Jacob was not admitted to the hospital (or hopi-tol, as Andrew calls it) today. He did not "pass counts". The first thing that happens in the Oncology Clinic is a CBC with differential. It gives the doctor information about the cells in a patient's blood. Our oncologists are specifically looking at Jacob's immune system. Today his ANC, the number of neutrophil granulocytes (a type of white blood cells), was less than what the minimum would be for starting the next round of chemo. Jacob has never "not passed counts", so it was a little disturbing for us. I guess it is an indication of how hard the last round of chemo really was on his little body. We will be going in on Monday to try again. In the mean time, Jacob will receive two doses of GCSF (an injected medication that stimulates his body to make blood cells faster) here at home. Luckily, Scott has experience injecting other people (he had to give me injections once a week for 2 1/2 years). Jacob was disappointed that he was unable to start chemo today. I think he was mentally prepared to start another round and the change of plans was unsettling for him, too. We did have some good news, though. Jacob's PET/CT scan results were very good. The tumor is continuing to shrink. We have not discussed the results with the physician yet (the results came in after we had left the clinic), but the preliminary report we received was good news! Please pray for Jacob's immune system to recover quickly! We really want to avoid long delays, if possible. The multiple infections Jacob acquired after the last round already have us off schedule by over a week. - Christina 10/12/08 - Sunday Jacob goes to the oncology clinic tomorrow to have lab work done. If his ANC is high enough he'll be admitted for his next round of chemotherapy. --ST 10/13/08 - Monday Jacob went to the clinic this morning and did not pass counts. His ANC is 455 which is much too low to start chemotherapy so he was sent home. His Auto ANC is 820 which suggests that he is on the verge of rebounding and we hope to see his neutrophil count jump up quickly. He's scheduled to return to the clinic on Thursday 10/16/08. If his ANC is high enough then he'll be admitted and start his next round of chemotherapy. The results of his last PET/CT scan from 10/9/08 are very good. As stated in the report: "There has been interval (since PET/CT of 9/2/08) decrease in size of a polypoid soft tissue density in the left nasopharyngeal region; this does not exhibit focal abnormal FDG [radiotracer] uptake on the current exam and is compatible with excellent response to therapy. Small volume of residual disease is considered significantly less likely." Dr. Crouse says we are where she expects us to be and this should be our last round of chemotherapy. --ST ------ Again, no admit today. Jacob's immune system still needs time to recover. Fortunately, there is evidence recovery is occurring. Jacob's white blood cell count showed a lot of precursor cells. That means he is recovering, it's just a little slower than we were hoping for. Jacob was a little upset about another delay, but it will be for the best, I'm sure. We did get some good news. We received a copy of the PET/CT scan results from last week. Our oncologist says it shows we are on tract and this should be our last round of chemo!!!! Dr. Crouse says Jacob might be well enough to rejoin his class in January! Jacob is really looking forward to that! We would like to thank (again) my Mom for being so willing to come at a moments notice to care for Andrew! Thanks Mom! We ended up not needing her help (yet), but we sure appreciate it! Jacob is scheduled for another clinic visit on Thursday. They are expecting him to pass counts and be admitted for the next (and last) round of chemo at that time. Andrew will be at our Children's Hospital Thursday, as well. He is scheduled for a minor surgery that morning. It should be a fun filled day, to say the least! - Christina 10/15/08 - Wednesday Jacob goes in for a clinic visit tomorrow. If his ANC is high enough then he'll be admitted and start his next round of chemotherapy. Andrew will be visiting the hospital too, this time as a patient. We've had a lot of postponements, but tomorrow he finally gets circumcised. --ST 10/16/08 - Thursday Just a quick note to let everyone know that Jacob was admitted to Children's Hospital Central CA today. He "passed counts" and started what should be his last round of chemo! Scott is with him today and tonight, because I spent the day with Andrew (also at Children's Hospital). Andrew had his surgery this morning and appears to be recovering very well. He's a little uncomfortable, but he's been a trooper (he takes after his big brother). - Christina 10/17/08 - Friday Yesterday Jacob received rituximab and methotrexate. This monring he had a lumbar puncture with intrathecal administration of methotrexate and hydrocortisone. He complained about his stomach hurting after the procedure and had some nausea and vomiting. Otherwise he handled the procedure really well. Only one more lumbar puncture left which will probably be next Wednesday if I am calculating it right. Jacob very much dreads having the procedure and get quite anxious. But when it comes right down to it, he handles it well and the nurses and doctor comment on how calm he is and how he doesn't fight the sedation. The rest of Jacob's stay in the hospital will revolve around the chemo-drug called cytarbine or ARA-C. This is the one that beat him up pretty badly last time. He will have five continous days of the medication. After which we expect his immune system to severely crash as it did last time. This is the part that makes Christina and I nervous because Jacob will be at high risk of picking up an infection. --ST 10/18/08 - Saturday We had a decent night last night. Not too many interruptions. Jacob and I got some sleep (not an over abundance, but at least it was some sleep). Yesterday evening his appetite was at full strength. He just kept eating and eating. Christina did a pretty good job of filling him up, and I expected that after she and I traded places Jacob would only be interested in light snacking. He was, but then he started asking for another meal. Christina had stocked up on microwavable spaghetti and meatballs which seemed to hit the spot. We are expecting his appetite to diminish as the chemotherapy takes effect, so it made me happy to see him eating last night. His ANC is 2174 today. --ST 10/19/08 - Sunday Just a qiuck note to let everyone know that things are going well. Jacob has been in good spirits and we haven't experienced any complications, yet. We are on cytarabine day #2 (of 5). Cytarabine is a chemo drug that will be slowly infusing continuously for 5 days. Last time it was pretty rough (infections, no eating, etc). This time seems to be better. Hooray! Andrew is starting to recover from his surgery. His 'battle scars' are healing and he does not seem to be as uncomfortable. He has been very brave through this and we are proud of him! My mom was able to come visit Jacob yesterday at the hospital and she got her first taste of Nintendo DS. She will be spending a few days with us, helping with Andrew. - Christina ------ Jacob's ANC is 2923 today. His ANC went up at the begining of chemotherapy last time too. This happens when neutrophils that are normally in the tissue begin to migrate (demarginate) into the blood stream. This will temporarily increase the number of neutrophils floating around in the blood which is measured as the ANC. I expect Jacob's ANC to start decreasing in the next day or two. --ST 10/21/08 - Tuesday Yesterday Jacob's ANC was 4600, today it is 3827. His immune system is officially on the down slope. Yesterday morning Jacob's temperature was higher than normal. Not quite in the fever range, but bordering on it. He was started on an antibiotic (ceftriaxone) as a precaution. Otherwise he's feeling good and still has his appetite. His little brother, Andrew, on the other hand has a cold. We are being extra cautious that we don't transfer any germs to Jacob from home. Tonight the last bag of cytarabine will be hung (and will finish infusing sometime tomorrow night). Jacob and I aren't getting the best sleep. There are lots of minor interruptions throughout the night that keep waking us. That's because he's receiving chemo-drugs which involve more monitoring than normal. --ST 10/22/08 - Wednesday Jacob's doing surprisingly well considering the amount of chemotherapy he has received. It is starting to catch up with him, but overall he is doing a lot better than the last round of chemo (which was identical to this round). His hemoglobin (HGB) is 10.2, platelet count (PLT) is 106, and ANC is 3040. There was a mishap today with the ventilation system in his room and he was moved to anther room. When the system was shut off for maintenance, a bunch of dust and debris fell out of the intake vent. It happened in several of the rooms in the oncology unit. If everything stays on track, Jacob will come home tomorrow after he gets a lumbar puncture (LP). He's not looking forward to the LP, but it will be the last one of ten in total. He will receive an intrathecal injection of cytarabine and hydrocortisone. Last night at about 11:45 PM Jacob and I watched the last bag of cytarabine being hung. It runs for 24 hours, so tonight when it is empty it will be the last of the IV chemo that he will receive. If Jacob is lucky enough to become cancer free after all of this, then tomorrow's LP will mark the end of his cancer chemotherapy. --ST ------ This (hopefully) last round of chemo has gone by very fast. I feel like I have been running non-stop since it started! Jacob is doing very well. He is eating, playing, able to take short walks, and very positive. His ANC is starting to go down, but he has stayed infection free during this hospital stay. He spiked a fever of 102.2 on Monday night and the oncologist started antibiotics, but he started feeling better the next day and they think it was just a reaction to the chemo (Ara-C, a.k.a cytarabine). He is scheduled to be discharged tomorrow after his lumbar puncture (his last dose of chemo). It will be good to have him home. We expect to have to return to the hospital in the next few days due to fever/infection. We will keep you posted.... We were blessed to have my mom stay with us for four days during this admission. She really helped make things easier. We also had help from Andrew and Jacob's Aunt and Uncle. They have been so wonderful, taking care of Andrew so Scott can get work done during the day. I think I already mentioned this, but the PET/CT scan we had done on 10/9/08 shows that the tumor is most likely gone (no metabolic activity). There is a small amount of tissue left, but the oncologists feel it is just scar tissue that should not be a problem. Right now the plan is to finish this round of chemo and then monitor closely for any signs of recurrence. Jacob will be seen monthly for 2 years, and then it will slow down. It will probably take him 6 to 9 months to recover from the chemotherapy, but he should be able to return to school in January or February of 2009. As we go into this next phase of treatment we will keep everyone updated on how Jacob is being monitored, what they find and how he is progressing during his recovery. We are very grateful for the loving friends and family we have had supporting us through all this! Although we have a long way to go, we are happy with Jacob's progress and we know that all of you have helped to make it happen! - Christina 10/23/08 - Thursday (Morning) Jacob's last lumbar puncture (LP) went well this morning. He was anxious about the procedure and mostly concerned about the after effects of the sedation. But he recovered quickly and is not showing any drowsiness. Now we are just waiting for the oncologist to finish her other procedures and then she will write Jacob's discharge orders so that we can go home. This was his last LP and his last chemo-drug. Now we focus on recovering. Currently Jacob's ANC is 1978. It is showing a steady decline. The five days of receiving continuous cytarabine has suppressed the production of neutrophils so that very few if any new ones are being made. A neutrophil's lifespan is about 3 to 4 days which means he is currently using up his reserves. As the remaining neutrophils get fewer and fewer in number he becomes more and more susceptible to infection. If the past is any indicator of the future, then we will probably return to the hospital in a few days when Jacob's immune system hits its low point. He'll be put on antibiotic therapy and after he's fever free for a couple days and blood cultures are negative for bacterial growth, (and his ANC starts rising) we will be able to return home. But in the mean time it will be nice to be home. Jacob and I are looking forward to sleeping in our own beds and not having the numerous nightly interruptions of sleep caused by buzzers, hospital staff, and bathroom visits. --ST 10/23/08 - Thursday (Evening) We're home. We're exhausted. There is a lot to do. Jacob is in good spirits. My brain hurts. I'm looking forward to a good nights sleep. --ST 
 10/24/08 - Friday Jacob is doing okay. He didn't like getting an injection of G-CSF this afternoon, and complained that it hurt more than normal. He is so lean that I have a hard time consistently grabbing enough skin to give him a subcutaneous injection. There was more resistance than normal when I pushed on the plunger of the syringe, so I am guessing that I hit some muscle. Tomorrow I will practice feeling around on his shoulder until I feel confident that I am just pinching skin and not muscle. Because his immune system was suppressed for quite a while after the previous round of chemo, we talked the oncologists into prescribing G-CSF. This is a medicine that stimulates the production of neutrophils. It also goes by the name filgrastim, neupogen, and Granulocyte - Colony Stimulating Factor (G-CSF). We will continue with the injections until his immune system is up to par (i.e. his ANC is at an acceptable level). Christina and I are tired. I know Jacob has been hit hardest of all, but this has been a long course for us too. I know from the previous round of chemo that it will take about two weeks of being at home before life is on the verge of becoming normal again. --ST 10/25/08 - Saturday So far so good. Jacob has not shown any signs of running a fever. The odds are that we will end up back in the hospital in the near future when his immune system hits its nadir. But everyday that goes by without Jacob spiking a fever, means a greater chance of not having to return to the hospital for antibiotic therapy. Otherwise it's been a quiet day at home trying to get our backlog of chores done. --ST  |
| 10/26/08
- Sunday We just wanted everyone to know that Jacob is still home! He received his last dose of chemo Thursday morning (lumbar puncture or LP) and came home from the hospital the same day! Although we expected to return to the hospital a few days later with a fever, so far it has not happened. I'm almost afraid to say it, but maybe we won't be readmitted for fever this time! I think this is our record.... 3 days at home after a round of chemo and no fever! We are very excited about the "No Mo Chemo"! It's been an exhausting 4 months, but it looks like we are at the end! One of the nurses made a hat for Jacob to celebrate his last bag of IV chemo being removed from the IV pole. - Christina 10/27/08 - Monday (Night) Christina took Jacob to the hospital tonight. They left at 11:30 pm. He ran a temperature of 101.4. That is just high enough that the oncologist wanted us to bring him in. He was broken hearted having to return to the hospital. We were hoping to cheat fate and not have to return this go-around. Sadly the odds ended up very much stacked against the little guy when all three of the other members of our household got colds . . . me getting hit hardest today. It just wasn't possible for him to avoid coming in contact with our cold bug. Early this evening he started sniffling, then later there was a little coughing. Poor guy, I feel like I failed him because I didn't stay healthy and worst of all, couldn't take him into the hospital tonight. That task fell to Christina. --ST 10/28/08 - Tuesday Jacob received transfusions of platelets and packed red blood cells this morning. His labs: platelets 7, hemoglobin 6.6, hematocrit 17.9, ANC Auto 810, ANC 672. He's had a chest x-ray, nasal swap and blood cultures. Christina is pretty tired. She hasn't had sleep in more than 24 hours. This wasn't a good time for all of us to get sick. --ST 10/29/08 - Wednesday Jacob's chest is clear, but he has some coughing and minor stuffiness in his nose. Christina's cold has worsened. The poor dear is taking the brunt of staying with Jacob during this admission so that I can stay home and deal with my own cold (and take care of Andrew who's doing well). --ST 10/30/08 - Thursday After spending a cumulative total of 60 days in the hospital, Jacob was discharged this afternoon. He's got a cold, but is otherwise healthy enough to come home (none of the cultures grew anything). My family is exhausted. We are all sick (Andrew is doing the best). But now that this most recent admission to the hospital is over, I feel like we have reached a major turning point. It appears that the cancer is gone; Jacob's bone marrow is starting to again produce platelets, red and white blood cells; he's officially on the road to recovery. If I were to use an analogy to describe the last four and half months it would go something like this: when we received the diagnosis that Jacob had cancer it was like falling unexpectedly into a pit or underground labyrinth. We were trapped, we couldn't get out, we were scared and not certain what the future would hold. Then we began to explore the labyrinth. Slowly we started to understand where we were and what we needed to do. We couldn't get out the way we had entered, we had to find a new way out. We found a map, it gave us hope, but we learned from this map that it was going to be a long and arduous journey with many perils. The map showed a tunnel that led out of the labyrinth, we started down this path. We knew eventually that there would be a light at the end of this tunnel. It took a while before we spotted it and even then it was faint and distant. But slowly, as we struggled forward, it got closer and brighter. It was a hard journey, sometimes things went well, sometimes things didn't, but we always had each other to lean on. When we finally reached the end of the tunnel (i.e. the last round of chemo) and could see the world outside, we found a gate (i.e. Jacob's declining immune system) barring our exit. It made us pause. The outside world was just within reach, but we had one last hurtle before we could escape the labyrinth. With our last remaining energy we pushed through this gate and fell tumbling out of the tunnel. We didn't emerge from the labyrinth like some victorious champion, instead we came out beaten up, exhausted, haggard, and worse for the wear. But we made it through and we made it through as a family. It will take time to recover physically, mentally and emotionally from this long ordeal. And it will take time to piece our lives back together. But for Christina and I the most important thing that has come out of all of this is time. Jacob now has time. Several months ago we faced the possibility of losing him. But now, all these months later, after going through perhaps the toughest trials of his life, Jacob has time . . . time to recover, time to heal, time to play, time to breath . . . time to live. We aren't out of the woods yet. We hope that we got all of the cancer with the chemotherapy. But it only takes a single cell to start the whole disease over again and there is always the risk, ironically, of a new neoplasm arising because of the cellular damaged caused by the chemo-drugs (this is very rare). So what we do now is watch him. He will be monitored closely for the next two years which is the period most likely for this type of cancer to reappear. After that, the odds are greatly in his favor. To continue my analogy of the labyrinth: one moment we were on solid ground and life was normal, the next moment we had fallen into a terrifying, dark, underground labyrinth. We scratched and scraped our way out and have finally made it back to the outside world. It is good to be out of the tunnel and back into the light. But the outside world seems different now. We understand that the ground isn't as firm as we thought it was, and that it is possible to fall unexpectedly into a dark pit. --ST 10/31/08 - Friday HAPPY HALLOWEEN EVERYONE!!!! We hope you all had a safe and wonderful trick-or-treat adventure! We did not have time to decorate this year, so it was a little strange for us. I love to go all-out for Halloween! I even have life size skeletons I hang in my entryway. This year we settled for carving 2 pumpkins and handing out candy to the trick-or-treaters we had come by. I guess we will have to make up for it next year. Monday night (10/27/08), around 10:45 pm, Jacob spiked a fever of 101.4. With Scott being sick, that meant that I had to take Jacob to the hospital. I stayed the entire three days we were there and (luckily) we were able to come home Thursday afternoon, just in time for Halloween! This morning (Friday, Halloween) we took Jacob and Andrew to Children's Hospital for their annual Halloween Parade. Jacob was invited back to participate in the parade. All the children (who are able) dress up and walk the hospital collecting candy from the hospital employees. It was a wonderful experience. We all had a lot of fun! This evening we watched one of our favorite family movies, Nightmare Before Christmas.  Jacob is feeling good and we are excited to be done with chemo. We have a clinic visit scheduled for next Wednesday (11/5/08) and we should find out about our next PET/CT scan at that time. Currently, we are waiting for Jacob's immune system to recover (which will take 6-9 months) and enjoying being free of the hospital! - Christina ------ Jacob's immune system will take 6-9 months to make a "full" recovery. It will be almost completely back to par long before that. --ST 11/2/08 - Sunday We spent a quiet weekend at home. Jacob is doing well. He still has a cold but is improving quickly. Jacob received his last dose of G-CSF this evening and he is glad to not have to deal with getting anymore shots. Christina and I on the other hand are exhausted. It is going to take a while before we are back to normal. --ST 11/5/08 - Wednesday Jacob is doing well and enjoying being home. His hair is starting to grow back. The fine blonde fuzz is getting denser and starting to turn darker. In a month he should have a nice crop of short hair. This Friday he has a follow up appointment at the oncology clinic. There were a lot of things that Christina and I postponed during the last four months that we are now slowly getting to. It is keeping us very busy. I'm still dealing with the remains of a cold, the worse one that I have had in years. --ST 11/7/08 - Friday Jacob had a clinic visit today. He is scheduled for a PET/CT scan next Thursday (11/13/08) and will return for his next clinic visit on 11/19/08. His immune system is not quite where we want it but it is not bad. His lab results are as follows: ANC 630, ANC Auto 850, HGB 10.1, HCT 27.5, PLT Count 252. Each year Jacob's old school has a dinner auction to help raise funds. This evening Christina delivered some items to the auction that we are donating. Jacob wanted to go along and had a chance to see some of his old friends. It was really good for him to socialize. --ST 11/9/08 - Sunday Scott and I have been very busy getting the house and our lives back in order after a long 4-5 months. Jacob is doing very well. He's starting to grow a little hair (very exciting) and we have another PET/CT scan scheduled next Thursday to confirm that the tumor is gone. If everything is as it should be, then we are in remission and waiting for Jacob's immune system to recover enough to go back to school. Our oncologists are still thinking January, but Jacob might be doing well enough to participate in a couple school events in December.... we'll see. Last Friday Jacob and I went over to the local Community Center to drop off a few auction items for Jacob's old school's annual dinner auction. Jacob really wanted to go and he ended up very much enjoying himself. Of course, lots of people were coming up to us and wanting to hear how he was doing, but after that Jacob was able to spend some time with two of his classmates. He had a great time and probably did more playing than he has done since we were diagnosed (back in July). It really made me feel good to see him having such a good time. - Christina 11/13/08 - Thursday Jacob had another PET/CT scan today. We will get the results next week when he has a follow up visit at the oncology clinic. He was really dreading this scan since he needs to severely limit his carbohydrate intake for 24 hours before hand (that is not an easy task for a picky 11 year old). And then there is the dreaded needle poke to start an IV line. Overall, Jacob has been doing well. He still doesn't have a lot of energy but each day I can see him getting stronger. I wish I could say the same for Christina and I. Now that we have been home for awhile, it has become apparent how "beat-up" we are (both mentally and physically). Of the four of us, Andrew is doing the best. --ST 11/19/08 - Wednesday Last weekend, my family and I went on a much needed vacation to Pismo Beach. The weather was incredible and we had a very nice time (although not as relaxing as we had hoped). Jacob had a clinic visit this morning. The results of last week's scan show no sign of cancer, but Jacob does have a nasal polyp that Dr. Crouse, his oncologist, would like removed. We have an appointment with Jacob's ENT doctor this Friday to discuss removal. Jacob's immune system is taking its time returning to normal. But otherwise he is doing well and his hair is growing back nicely. He got a flu shot at the clinic (he wasn't happy about getting stuck by yet another needle). He will keep his mediport in place for the next three months. Then in February he will have another scan and if everything looks good, we'll schedule a surgery to remove the mediport. His next clinic visit is on 12/3/08. Jacob's Labs: ANC 627, ANC Auto 750, HGB 12.0, HCT 33.1 --ST ------ Jacob had a great time in Pismo last weekend! He and Andrew played in the waves and enjoyed unusually warm weather all three days we were there. Yesterday Jacob and I spent four hours in the oncology clinic. Jacob's ANC is still low, but he's recovering from his four plus months of chemo. His hair is really starting to come in and everyone is noticing. The PET/CT scan we had last week has confirmed the presence of what the oncologist believes is a polyp in the nasal region. They do not feel it is related to the cancer, but they still want it addressed (and removed) right away. We have an ENT appointment on Friday (tomorrow) and we will find out more information at that time. Hopefully, it's going to be a relatively simple procedure. - Christina |
11/21/08 - Friday (1st Day of Remmission) Well, today was the ENT appt. Jacob was pretty worried, but he did really well. Dr. Lanier called Jacob's nasal passage "pristine," so we felt pretty good about that part. He did find the "polyp" that our oncologist, Dr. Crouse, wants removed. He says it is filling up some of the space that at one time was occupied by the tumor. Dr. Lanier isn't worried about the polyp and does not feel it needs to be removed and biopsied, so he is going to discuss it with the oncologist and we'll see who wins. Otherwise, things look good and there is no sign (via PET/CT or visual inspection) of the cancer! I think we can comfortably say that now we are in remission. Scott is going to add this date to our timeline..... 11/21/08 First day of Remission. It is 5 months and 1 day from the initial ENT appointment, the day we first heard the word "tumor" (June 20th, 2008). I think we have a lot to be thankful for this year.... we adopted a son and beat cancer in 2008! - Christina 11/22/08 - Saturday Jacob has moved into a new phase of his life, he is now in remission. Thinking about what we have achieved these past five months produces an overwhelming mix of thoughts and emotions. These web pages have chronicled our family's journey through this very intense ordeal, recording not only events but also our thoughts and feelings. For both Christina and I, it has been therapeutic to share all of this with you. Thank you for coming here and reading about Jacob. We have received numerous comments about these pages and that make us feel good. Christina and I will continue to update you on Jacob's progress. In the mean time, I will do a little updating here and there to reflect Jacob's change in status from having cancer to being in remission. --ST 11/28/08 - Friday No word yet from the ENT doctor about whether the nasal polyp is staying or coming out. Most likely Dr. Crouse will win the arguement and the polyp will be removed. Jacob is doing well. Each day he is a little bit stronger. We had a good Thanksgiving and there was much to be greatful for this year. The two biggest events that I was most thankful for were Jacob being in remission and Andrew's official adoption. As you can tell, Christina and I are writing less and less about Jacob's cancer. This is a sign of our lives begining to normalize. It is still not "normal," and I never expect things to every be completely normal again. But life is starting to resemble what it once was and that feels good. Our Christimas tree is up! --ST 12/4/08 - Thursday Jacob had an oncology clinic appointment today. He's been doing well, getting a little more energy and staying healthy. Unfortunately, his ANC is still low. It was 690 today (normal is above 1500). I guess his little body just needs to take it's time recovering from those 4 months of chemo. Our next clinic appointment isn't until after New Year's, so we will be monitoring him carefully over the holidays. Jacob is still at risk for infections. A fever will send him back into the hospital again, so we have to be diligent. Jacob was a little disappointed about his ANC today, because it means he can't go Christmas shopping in a store. He likes to pick out his own presents for his grandparents and close family members. We are planning to help him do some online shopping instead. - Christina ------ It is still being debated about what to do with the nasal polyp (remove it or leave it alone). Dr. Crouse was not available today at the clinic to make a final decision so it will be addressed at a later time. --ST Lab summary RBC 3.91 HGB 12.3 HCT 34.4 PLT 192 ANC Auto 690 12/6/08 - Saturday Andrew was occasionally coughing in the middle of the night. This morning his nose was running. Christina took him to the pediatrician who thinks it is a cold. Not a big deal by itself, but because Jacob's immune system is still depressed we are worried about him getting this cold which could land him back in the hospital. We DON'T want that! So we are back to the constant hand washing and other procedures to reduce the spread of infection which is not easy with a little two year old mucous factory running around. And Christina is showing the early signs of a cold. --ST 12/8/08 - Monday Dr. Crouse called this morning and together we decided that the nasal polyp should be removed. She says she doesn't have a hard medical reason for removing it, but thinks it would just be better overall to have anything remotely questionable "out of there." Christina and I are of the same thought. The surgery will be sometime early next year since there isn't any pressing reason to do it sooner. We haven't told Jacob about it yet. We'll save this news for after Christmas since we don't want him fretting over another impending surgery even though it will be a minor procedure. Jacob is finally starting to get back into the swing of doing school work. After all that has happened to him this year, he has had a hard time being positive about school. His teacher has been working with him closely and concentrating on his math skills. --ST 12/13/08 - Saturday As Jacob gets stronger and life becomes more predictable, I find less to write about. Things are going well for us all. After a lot of hard work I'm mostly caught up at work . . . just in time for my busiest month of the year. --ST 12/18/08 - Thursday Jacob has been more emotional than normal during this last week and he is showing the strain of being "sequestered" at home. After 5 1/2 months of dealing with cancer chemotherapy, having a suppressed immune system, and spending a lot of time at home he is starting to show some "cracks around the edges." He misses his old life and his friends and all the things that make life normal. He has even commented on feeling like it isn't the Christmas season. Christina and I understand what he's feeling because we have experienced something similar. Once the chemo treatments ended and we had a chance to be at home, we found ourselves inundated with things to do as we attempted to get caught up on everything we couldn't do while Jacob was in the hospital. We have all been very busy, but really haven't had and abundance of time to devote to extracurricular activities. Even Andrew seems to be experiencing a little bit of cabin fever. We told Jacob that it will get better, just be patient, once his immune system is normalized he will be able to be out in public more and life will be better. --ST 12/21/08 - Sunday (Winter Solstice) Happy Holidays, Everyone! Jacob has been doing very well. We have been trying to keep things low key around here, so that his immune system can focus on recovery. Last night we took Jacob and Andrew to look at Christmas lights. It was a lot of fun, although it seems like there are not as many decorated houses this year.... perhaps reflecting the current economic times? Jacob is looking forward to a visit from his aunt (she is braving the airports to fly all the way from New York!), uncle and grandma on Tuesday. Wednesday night will be our Toste family Christmas - always fun for the kids! Hopefully, we will be able to keep Jacob well through all the festivities. Jacob's tutoring is going well. He is finally feeling well enough to really focus on the work and he is starting to catch up. We are hopeful that he will be on target by the time January ends. If all goes well, Jacob may be going back to school in late January or early February. As I mentioned before, Jacob will be having surgery in early January to remove a polyp or scar tissue from the area in his nasopharynx where the tumor was. The ENT physician does not feel it is a problem, but everyone just feels like it should come out and be tested and Scott and I agree. We don't know the surgery date yet, but will let you know when we do. Andrew is over his little cold and definitely in the 'terrible twos'. The last two months have been full of changes. He is growing and developing so fast, each day is a new adventure! Scott has been very busy with the family business's year end preparations. Somehow he found time to help me with the wrapping and decorating. I could never get it all done without him. Unfortunately, I haven't been able to do as much Christmas shopping this year. It's been hard to get away and shop. I usually have half my shopping done before Halloween, but I didn't even start until Thanksgiving this year! We hope you and your families are healthy, happy, and excited for Christmas. Our family has been blessed beyond words this year! Thank you to everyone for your continued love and prayers! Lots of love to all! Christina 12/30/08 - Tuesday We had a good Christmas and all of us are doing well. Today Jacob will have some lab work (blood test) done in preparation for his surgery on January 8th which will remove the nasal polyp. He's not happy about having yet another procedure done on him, but otherwise he is in good spirits (all of his new toys that he got for Christmas are keeping him pleasantly preoccupied). --ST 1/3/09 - Friday Happy New Year! 2008 was quite a year for my family -- we finalized the adoption of our son Andrew and successfully got Jacob through his battle with cancer. I'm hoping that 2009 will be a much less traumatic year. On New Years Day I sat down at my computer and went through the photos that we had taken during 2008 to prepare them for archiving. Preserving our digital photos is very important to me, and I work diligently at categorizing and describing them as we go through the year. At the end of the year I review them to make sure I didn't put any in the wrong folder and to write descriptions for any important photos I missed. I was surprised to find that this year we had taken more pictures than any previous year since we got our first digital camera in 2000 -- some 16,000 photos. That is a lot, even for us! It was interesting to review all those photos, and it reminded me of how much Andrew has changed in the last year. He has gone from a little baby who was just getting used to walking, to now being on the verge of becoming a "little boy." When I looked at photos of Jacob from early 2008, I realized that at that time he had cancer -- an aggressive tumor was growing in his nasopharynx -- and none of us knew. He looked happy and relatively healthy. But in a few months he would not be able to breath through his nose, and not long after that he would be undergoing chemotherapy. Then there were the photos we took during his hospital admissions. It now seems like that period was a long time ago, and thinking back to that time feels surreal. Reviewing all of these photos was a sobering experience. Life is full of unexpected twists and turns. Some of them devastating. But amongst those twists and turns are subtle reminders of what life is all about -- family. That was the underlying theme of many of the photos we took in 2008. I truly am grateful for my family. And I am glad that Christina and I record our lives with pictures so that we can look back and remember. . . . and I am glad for digital cameras . . . I cringe at the thought of the cost of developing so many film photos versus the cost of archiving digital photos on a couple $0.25 recordable DVDs. --ST 1/8/09 (Thursday) Today Jacob had a surgical procedure done by his ENT doctor to remove the residual mass leftover from the tumor. It was little more than a small nasal polyp, and the operation only took twenty minutes to complete (not including prep and recovery). Everything went well and Jacob has been pretty sleepy today as he recovers from the general anesthesia. It will take approximately a week to get the pathology report back. All indications are that Jacob is cancer free, but Christina and I would really like to get the biopsy of this residual mass behind us so we can have one more piece of evidence that the cancer is gone. After going through four months of intense chemotherapy, further PET/CT scans showed that Jacob was in remission. There was a residual polypoid mass that his physicians suspected was left over scar tissue from the tumor. On January 8, 2009, five and a half months after being diagnosed with cancer, Jacob had the residual mass in his nasopharynx surgically removed. Below are the images captured by the ENT physician during the procedure:  The top two images show the nasal polyp as seen in a mirror held near the soft palate. The bottom two images are viewed through the nasal passage (left image is before excision, right image is after excision and shows the cauterized area). --ST ------ Happy New Year, Everyone! Jacob had surgery this morning.The ENT physician removed the scar/polyp/cyst tissue that was occupying some of the space in Jacob's nasopharynx where the tumor used to be. The doctor said that everything looks good and there is no visual sign of cancer. He says what he removed appears to be fibrous and cyst tissue, but he is sending it for pathology testing and we should know for sure in a week or so. Jacob was very nervous before the procedure, but did very well and is recovering at home. Jacob has been doing very well with his home schooling. He is still behind (due to missing so many tutoring dates due to chemo), but catching up fast! We are hopeful that he will be able to return to next month. Next oncology clinic visit: Thursday January 15th Next CT/PET scan: mid-February Next surgery: Mediport removal TBA - Christina 1/13/09 - (Tuesday)  I Just got a call from the ENT notifying me that the pathology report for Jacob’s nasal polyp came back clear. No sign of cancer. Just normal tissue. That is great news! We are one step closer to getting our little boy back to normal. His next oncology clinic visit is this Thursday and I am eager to see if his immune system is back to normal. Now we can begin focusing on the question: When does he have his mediport removed? Jacob dreads surgery, but it will be good to get that device out of his body. Whenever he and I wrestle, we are very aware of the port and try not to bump it. It will be nice when it is gone. --ST 1/15/09 (Thursday) We had a bit of a scare last night. Jacob got up in the middle of the night and was complaining of not feeling well. He was shaking, had a rapid heart rate and was very pale. He ended up vomiting and then felt a lot better. Any other time Christina and I would have just watched him carefully and let things take there course. But since he has a mediport in place we have to watch very closely for any signs of infection. We were all geared up to make a nighttime run to the hospital, but he improved and we got through the night. Luckily he had an oncology clinic visit scheduled for the next day (today). He checked out as being fine and his immune system is back up to par. The next step is another CT/PET scan in February and then the removal of the mediport. Christina is exhausted after staying up most of the night to monitor Jacob. I've got a great wife. She amazes me! --ST ANC 3465, HGB 12.5, RBC 3.91, PLT Count 200 1/19/08 - Sunday Time is just flying by right now! Jacob is doing very well. We have the results of the pathology on the scar tissue the ENT physician removed 10 days ago. Everything looks great! It was just fibrous scar tissue and a cyst. No cancer! It's a great relief to have that behind us! Last Wednesday night we had a little scare. Jacob felt sick and his temperature got up to 100.7 F, but it was so foggy we couldn't take him into the hospital! The following morning we went into the oncology clinic and, fortunately, Jacob was doing a lot better. We think it was just a little stomach virus, but we are watching him closely. We have another CT/PET scan coming up on February 9th. If everything looks good and there is no sign of cancer, we will be scheduling surgery to remove Jacob's mediport (a central line under the skin in his chest so that chemotherapy can be administered). We are really looking forward to this surgery because the port can greatly increase the chances of sepsis if Jacob gets a bacterial infection. Because of this, anytime Jacob gets a fever we have to admit him to the hospital and start IV antibiotics. We have been able to keep him well for 3 months.... just one month to go! Today was the first day Jacob has had enough energy to play outside. I took Jacob and Andrew to the park for about 45 minutes and then, when we got home, Jacob and Scott played outside for over an hour. Jacob even rode his bike for the first time in 8 months! Jacob is definitely getting stronger! It's so great to see him feeling more and more like an 11 year old boy again! Last Friday Jacob got his first haircut post chemo! It was just a little trim, but it's great to see so much hair on his precious little head! We are starting to think about sending Jacob back to school, too. We are still weighing the pros and cons of starting before the mediport comes out. - Christina 1/21/09 - Wednesday Jacob had a follow up appointment with the ENT physcian. He said everything looks good and he wants to see him in 3 to 4 months. --ST 1/25/09 - Sunday Last Thursday two volunteers from the Make-A-Wish Foundation came to our home and interviewed Jacob. As many of you know, Jacob is a HUGE Star Wars fan. His favorite character in the movies is Padme Amidala and his wish is to meet Natalie Portman. They are going to see what they can do to arrange this. I read a little about the organization on their website (see www.wish.org) and found that in order to receive a wish, the child must be diagnosed with a life-threatening medical condition – i.e., a progressive, degenerative or malignant condition that has placed the child’s life in jeopardy. Reading this hit me pretty hard. I know what Jacob faced. I knew what the risks were. Christina and I were devastated when we first found out that Jacob had cancer. But now that he is in remission and he is doing very well, we are trying to put our lives back together. When some random reminder pops up that we could have lost him, it leaves me unsettled for awhile. It is sort of like a delayed traumatic effect. Jacob is doing very well. His hair has come back healthy and full, but a little lighter (blonder) than its original color. He has energy and is spending more time playing outside with his little brother. --ST 2/1/09 - Sunday Things are getting busy around here as life gets back to "normal." Jacob is excited to go back to school. His first day back will be February 10th, the day after his next CT/PET scan. I received several emails regarding Jacob's first haircut post-chemo. Jacob has been feeling well enough to go outside and ride his bike and play at the park. We even went to the zoo last week. It's so nice to see Jacob having fun again! Two weeks ago I went back to work at Children's Hospital (only one day a week). It's been 8 months since I have worked as a pharmacist, so I am a little rusty (to say the least). I am blessed with very patient co-workers and I am hopeful that I will be up to speed soon. Last week we had a home visit from the Make A Wish Foundation. Jacob has decided that he would like to meet Natalie Portman (she is the actress that plays Padme in Star Wars I, II, and III). He has been in love with her since he was 2 years old. We are hopeful that his "wish" will come true. - Christina 2/9/09 - Monday Jacob had a PET/CT scan today. Hopefully we will have the results by Thursday when he has an oncology clinic visit. --ST 2/10/09 - Tuesday Jacob "unofficially" went back to school today. He won't officially restart until the begining of March. But for now he is going to attend class with his old schoolmates in order to ease him back into the swing of things. --ST ------ Just a quick note to let everyone know that Jacob had a great first day of school today! I think I was more nervous and emotional than anyone else. He's so excited to be back... it's heartwarming, to say the least! I will write more in the next couple days. We should have the latest scan results on Thursday. - Christina 2/12/09 - Thursday The results from Monday's PET/CT scan are in! It's a 'negative scan', which means NO CANCER! We are "GO" for mediport removal (Jacob's central line, a device that is implanted under your skin so that medications may be delivered directly into your blood system). We should be finding out more details (date and time) soon, but for now we are relieved to be getting back to normal life. As most of you know, Jacob is back at his old school. He's had a short week, due to the scan on Monday and an oncology clinic visit today, but he's thrilled to be back! Many thanks to the wonderful people at his school for helping the transition back be a happy one. Also, we are making plans to visit Disneyland in April. I promised Jacob that we would take him once his cancer treatment ended.... and we are there! Hooray! Jacob is looking forward to a Valentine's Day party tomorrow at school and a friend's birthday party tomorrow night! - Christina 3/3/09 - Wednesday It's been a busy two weeks of getting back into the school routine and adjusting to homework and school functions. Jacob had a lot of fun at "Skate Night" last Tuesday. Andrew even got into the action. We played phone tag with doctors and surgery scheduling for a while, but we finally have a date! Jacob's mediport will be removed on March 13th! Many thanks to Jacob and Andrew's aunt who has graciously volunteered to watch little Andrew during the surgery, so that both Scott and I can be there for Jacob. It's that time of the year.... We call it JACOB-PALOOZA! Jacob will be 12 years old on Thursday, March 5th! There were a few days last summer when we thought he might not get to "12", so it's been a little bit of an emotional roller coaster for Scott and I lately. We are still adjusting to post-chemo/remission life. We are giving Jacob a little birthday party on Friday with his friends Again, thanks to everyone who continues to pray and think positive thoughts for Jacob! We appreciate all of you very much! Yesterday one of my friends daughter's told me she prays for Jacob every night and she thinks that is why he is better and back at school. How beautiful is that? - Christina  3/5/09 - Thursday (Jacob's Birthday) Today is Jacob's birthday. He's twelve years old. His birthdays are always special for him, but this one will hold a special place in my heart. Last summer when we first found out about his cancer, Christina and I were faced with a parent's worst fear, the mortality of our child. There was a two week period where neither of us slept well and our appetites were gone. We were literally worried sick and falling apart. The idea of a future with no Jacob was all at once unimaginable yet looming in front of us. It wasn't long before the oncologist and oncology pharmacist at Children's Hospital gave us hope. And many other people that we came across at the hospital assured us that Jacob had a very treatable cancer and his odds were very good. Christina and I latched on to this hope and it helped get us through Jacob's chemotherapy. So here we are now, four months post chemotherapy and no sign of cancer. Jacob has returned to school, he has energy, his hair has grown back -- he is healthy and very much full of life. Not long ago I didn't know if he would have many more birthdays. I count my blessing and I cherish my little boy. He is here with me today, he's well, he's happy, and he will probably have a very long life ahead of him. --ST 3/8/09 - Sunday Jacob, Andrew and I got haircuts yesterday. Jacob's hair has grown back lighter and curlier than it was pre-chemo and he doesn't like it (he likes his hair the way it used to be). His hair isn't very long but it needed a little trimming which cut off the curliest first growth which made him happy. This evening we told him about the impending surgery this Friday to have the mediport removed. He's scared and doesn't want to have surgery (again), but he knows it is something he has to go through to get the back to "normal." -ST 3/12/09 - Thursday Tomorrow Jacob goes in for his surgery. All of this week he has been worrying about the procedure. It will be nice for all of us to get it behind us. -ST 3/13/09 - Friday (Mediport Removed) Today, Jacob had surgery to remove his mediport. I took him to the oncology clinic this morning so that his port could be accessed (i.e. an IV line started) and blood drawn for lab work. When we were leaving the clinic and passing through the waiting room we saw a fellow patient and her grandmother that we met while Jacob was receiving chemotherapy. The little girl had leukemia. She had been receiving treatment for her cancer long before Jacob was diagnosed with his and was still in the middle of her treatment. We talked for a few moments and then excused ourselves so that we could get to the day surgery department on time. Seeing this little girl with her bald head and pale skin reminded me of how far Jacob has come in such a short time. Leukemia can take roughly three to five years to treat. Jacob’s cancer, a type of lymphoma called Burkitt Lymphoma, was fast growing and the tumor was confined to one location. Ironically, this fast growth made it easier to treat, allowing for a relatively short course of therapy. Later, Christina and I were sitting in the surgery waiting room while Jacob’s port was being removed, and we talked about how fortunate we felt. This day-and-age is a good time to be alive. We are lucky to be in a world possessing enough knowledge and technology to save Jacob’s life. In another time, Jacob’s tumor would have killed him. It’s rapid growth filled his nasopharynx preventing breathing through his nose. If left untreated it would have eventually pushed down on his soft pallet completely closing off his airway (i.e. no mouth breathing). But that didn’t happen. We live in a world where we have imaging technology, cytological technology, pharmaceutical technology that all added up to giving Jacob the best chance to beat his cancer than has ever existed before this point in time. Christina and I feel lucky. The ordeal that our family has gone through was intense. She and I are still dealing with the emotional fallout from the experience. But when we think about other patients like the little girl and her grandmother, whose ordeal lasts for years because leukemia is harder to treat and these kids are often sicker than Jacob, we feel fortunate. Jacob went through four very intense months of chemo, and has now been in remission for four months. Almost immediately after starting chemotherapy his tumor began shrinking and his nose opened up. Each scan showed the tumor shrinking further until there was nothing left. We had no major complications. Altogether things went smoothly. Jacob’s surgery went well. In past procedures he received midazolam (think of it as short acting Valium) as part of his anaesthesia. It reduces pre-surgery anxiety, but also induces amnesia. Jacob doesn’t like the amnesia and expressed his concern about not being able to remember anything until waking up at home. The anaesthesiologist decided to not administer the drug and Jacob did just fine without it. In fact, he recovered remarkably well after waking up from the procedure. Usually he sleeps away half the day, but today he is doing so well that it is almost like he never had anaesthesia. Now that the mediport is gone, we have started a new chapter in his life. To learn more about Mediports visit the Wikipedia article. -ST  This is Jacob's actual mediport. We got to keep it after it was removed. The
device was placed under his skin on his chest. A tube went from the mediport
under his skin, up his chest to his jugular vein, down the vein and into the
right atrium of his heart. It allowed for the best venous access that would
thoroughly mix medication with his blood thereby reducing possible irritation of
his vasculature. Since it was under his skin it stayed sterile when not in use
and reduced the chance of him picking up an infection.
3/18/09 - Wednesday As most of you already know, Jacob had his mediport removed last Friday. The surgery went very well and Jacob was home playing with his wii by late afternoon. Today will be 5 days post-surgery, so we will be removing his bandage. So far there are no signs of infection. It appears to be healing nicely. - Christina 4/8/09 - Wednesday Jacob had an oncology clinic visit today for a regular checkup. Everything looks good. He was pretty nervous about the blood draw because his mediport has been removed and the draw would have to come from a vein in the arm. He had an excellent phlebotomist, and he said it only hurt a little. Dr. Crouse was our physician today and it was good to see her. Jacob's next full body scan will be in May. His weight is 80 pounds. He's put on 12 to 14 lbs since his diagnosis in July 2008. We sat in a waiting area while the lab results were being processed, and struck up a conversation with the mother of a fellow oncology patient who was sitting next to us. There is something therapeutic about sharing your story with someone who is going through the same thing. Actually it is therapeutic to just tell the story to anyone. That is part of the reason why I document the events of Jacob's cancer here on this page. -ST 4/17/09 - Friday We had a very busy, fun-filled Easter. Andrew didn't quite get the 'put the eggs in the basket' concept.... a few ended up in the bushes... but overall a great family day. Jacob is doing very well in school. He still has problems with feeling overwhelmed and running out of energy, but things are slowly improving. He's gained 10 pounds and grown several centimeters since chemo ended on October 23rd, 2008. His hair has completely grown back and we are going to routine haircuts again! It's been wonderful to see the physical signs of health returning. I just registered Jacob on the St. Baldrick's website. They are a non-profit agency that raises money for childhood cancer research. There is an event on Monday May 4th, 2009 at Fresno State if anyone is interested in attending. This is our first year getting involved, but I have been told that they have volunteers that shave their heads in solidarity with the children who have cancer. The website is: http://www.stbaldricks.org I'm not sure when Jacob's information will be available on the website. They said it was "pending", last time I checked. Jacob will be honored at the May 4th event. He was invited/nominated by one of our Nurse Practitioners at our oncology clinic. Our next scan has not been scheduled yet, but is due at the beginning of May. These things always make me a little nervous, but we are just praying for the best and we will let you know more soon. - Christina 4/28/09 - Tuesday Next Monday, May 4th, Jacob is one of the children with cancer being honored at the St. Baldrick's/Fresno State Event. This will be our first year participating, so we are not sure what to expect. St. Baldrick's raises money for cancer research and Children's Hospital Central California (where Jacob received his cancer treatment) has received grants through them. We will let you know how the event goes. One of the Nurse Practitioners who has taken great care of Jacob will be shaving her head in solidarity with the children who suffer with cancer. It should be an interesting afternoon! -Christina 4/29/09 - Wednesday Jacob had an appointment with the ENT who diagnosed his cancer. The exam was just a simple follow up to make sure everything was going well. An inspection of Jacob's nasal passage revealed nothing extraordinary. -ST 5/4/09 - Monday Today Jacob had a physical exam with his pediatrician. He's doing very well and is growing. When he started chemotherapy last July he was 56 inches tall and weighed 67 pounds. Today he is 58.5 inches and 83 pounds. It is hard to describe how wonderful it makes Christina and I feel to see Jacob growing (but I'll try). There was a time last year when we saw signs of the lack of cellular growth (his hair falling out, cracks in his hands not healing, mucositis, ridges in his fingernails where growth was interrupted, etc.). Even though we understood what was going on and how the chemotherapy drugs disrupt cell growth, it broke our hearts to actually see it happen to Jacob -- our little boy. Today, something as simple as getting weighed and measure at a doctor's office has brought joy to us. The chemo also reduced some of his antibody titers requiring re-vaccination. He was not thrilled when he found out he was going to get three shots in the shoulders. The vaccines were Tdap, MMR, and meningococcal. Jacob has also been running a little low on energy lately. Actually, it is more accurate for me to say that he is still not up to par with his endurance. He may start out with energy but quickly putters out. The doctor wrote a note limiting his school PE participation to 2-3 times a week. Monday evening we attended a St. Baldrick's charity fund raising event held at Fresno State. Jacob was one of the honorees. The organization raises funds by getting people to donate money to entice volunteers to shave their heads in solidarity with cancer kids who have lost their hair. The money is then used to fund cancer research. It surprised us by how many people turned out to get shaved. There were college athletes, nurses, and an oncology doctor, amongst others. For entertainment, a band led by a former cancer patient performed. Jacob and his brother, Andrew, had a good time. Andrew (a very active two year old) got to be a little much to handle and we decided to leave before the event was over. While walking to the car, Jacob got very quiet and we knew something was wrong. It took a little digging by Christina before we found that Jacob wanted to return to the event. After a quick diaper change, we returned and everyone had a good time. Jacob received a little bit of public recognition for his battle with cancer at the end of the event which made him feel good. -ST  Jacob and some of his nurses at the
St Baldrick's event
|
| 5/11/09
- Monday The American Cancer Society held a special event at Great America for cancer kids on Mother's Day (yesterday). Jacob received free tickets and we drove up the day before. Jacob had a lot of fun, but is very tired today. -ST 5/14/09 - Thursday Today Jacob was going to have another routine PET/CT scan but the machine failed its morning test and needs to be recalibrated. The scan has been rescheduled for next Monday. The poor little guy dreads the procedure because he has to drink a radio contrast dye that he says is thick and really hard to drink. Although this is a routine scan, Christina and I always hold our breath until we get the results back. There are times when we think about the cancer returning and we become very fearful. It is almost too traumatic of a thing to comprehend. It is easier to just think positive, hope for the best, and continue on with our lives. But the spectre of Jacob's cancer returning always looms in the back of our minds. -ST ------ The St. Baldrick's event was a great success. Last I heard, they had raised over $12,000! Jacob had a great time. Near the end of the event, Malynda, our Nurse Practitioner, called Jacob up to the stage and introduced him. She shared some of Jacob's cancer story and his pending wish with Make-A-Wish with the crowd. Jacob felt very special. Last weekend (Mother's Day weekend) we went to the Bay Area. On Sunday morning, we went to Great America for the Courageous Kids event hosted by the American Cancer Society. They had food, games, gifts and (of course) free tickets to Great America for the children who have been battling cancer. We had a great time and it was extra special because my mom got to go too. Today, Jacob was supposed to have a PET/CT scan. Unfortunately, the machine was not working properly, so we have rescheduled the scan for Monday, May 18th. We will send out the results once we have them. Please pray that Jacob is still cancer free. I always get a little scared when it's time for a scan.... School is quickly coming to an end for Jacob. His last day of 6th grade will be June 3rd. As far as we know, he is passing everything (even with all the school he has been missing for medical appointments) and will be going on to 7th grade at the local Middle School next fall. This will be a big move for him. Until now, Jacob has been in a small private school. The Middle School is public and good sized. We are hopeful this will be a good change for Jacob. Luckily, I think a few of his friends from his old school will be going with him to the new school. - Christina 5/20/09 - Wednesday Jacob had a routine follow up exam today at the oncology clinic. We got the results from Monday's PET/CT scan and it is negative for cancer activity. However, the scan did show thymic and lymph node activity above his baseline but consistent with having a cold or bad allergies. And Jacob has had a slightly stuffy nose (the same as the rest of his family) which we have been trying to figure out if it is allergies or a very mild cold. Christina and I are pharmacists. We have clinical knowledge and experience that helps us understand Jacob's condition at a very detailed level. Sometimes this is a blessing, sometimes it is a curse. The scan showing increased metabolic activity in Jacob's lymphatic tissue is most likely just what the oncologist says it is, a sign of a cold or allergies. And Jacob has these symptoms. It all fits, and is probably not a sign of cancer -- probably. The world that Christina and I live in now is not the same world we lived in over a year ago. Back then the probability of childhood cancer hitting our family was the same for any other family, it was remote. Now we understand all to well that even small probability situations can happen. We are a little gun-shy. His next scan will be in three months. If the the "hot spots" in this last scan are gone in the next scan, then we know with a great deal of confidence that it was caused by allergies or a cold. Until then we just have to wait and give his body time to do what it is going to do. Every scan that comes up negative, increases the chance that Jacob will remain cancer free. It just takes time, and that's not easy for a parent. -ST 6/3/09 - Wednesday Today is Jacob's last day of school at the small private Christian school he has attended since preschool. He has completed sixth grade. Next year he will move on to a different school (public middle school). He's experiencing a mix of emotions: glad to be done, but sad to leave the place he has been at since pre-school. Christina and I are feeling the same mix. We are proud of him and what he has accomplished this last year, but a little melancholy knowing that he really isn't a little boy anymore. His grades are good which is amazing considering all that he has been through. Overall, Jacob is doing well. It has been approximately seven months since Jacob finished his chemotherapy. His hair has grown back and was initially curly. But as it continues to grow it is getting straighter which makes Jacob happy. He doesn't have the stamina that he used to. Jacob will start out doing something and have adequate energy, but then tires after a time. It is getting better as time passes and he is building endurance, and it will be nice for him to be able to rest during summer vacation. The routine schedule of school was tough on him when his energy would wane during class and he would have to push on. We would often get him home from school and he would collapse on us. Psychologically, Jacob is doing well, although all three of us (Jacob and his mom and dad) have dealt with a delayed reaction to the trauma and stress of going through the whole process of cancer diagnosis, treatment, and finally, remission. During the treatment phase we all buckled down and did what was necessary to get through the hospitalization and chemotherapy. It was very intense and exhausting. We were in "survival mode" and too busy dealing with Jacob's cancer to let anything get in the way of his direct medical care and best interest. But once the chemotherapy was over and we were home, each of us went through a tough period of readjusting to life. Jacob's body had been ravaged, first by the cancer and then by the chemotherapy. It will be years before he is mostly "back to normal." The lack of energy that he experienced was depressing. One of the other issues Jacob dealt with was the decrease in attention that he received after the the treatments were completed. For four months our lives revolved around him. While he was in the hospital Christina would spend all day with him and I would be there all night. Nurses were constantly checking on him and he received lots of visitors who were there just to see him. Jacob is normally a very shy and reserved boy who often shrinks away from lavish amounts of attention. But once the attention diminished, he felt its absence. Not that he was wanting to be the center of attention, but he felt like people had forgotten him now that he was done staying in the hospital. He eventually adapted and is doing fairly well. As parents of a child who has had cancer, Christina and I are still discovering all of the post traumatic effects of the experience. It has not been easy re-adapting to life. Once the chemotherapy was finished and Jacob was home, "life," which had literally been put on hold for months, resumed with a fury. Both my wife and I had episodes of feeling completely overwhelmed when trying to complete multiple tasks at once. What we called a busy day before Jacob's cancer, was now an overwhelming torrent of events that could literally shut us down. The passage of time has helped ease these feelings although each of us still has an occasional "bad day" where we feel like "if one more thing happens" we will fall apart. But the bond that I share with my wife, who is an amazing person, has helped me more than anything else cope with the aftermath of what we have faced. The toughest thing that I personally still face are those moments when some event (TV commercial, song, story, statistic, etc) causes me to instantly tear up and I am awash with emotion when the realization hits me that my son, my little boy, had cancer and I could have lost him. --ST 6/12/09 - Friday Next week will start our one year anniversaries.... 6/20 will be one year since we were told Jacob had a tumor growing in his nasopharynx. July 3rd will be one year since Jacob's first surgery, a biopsy of the nasopharyngeal mass (tumor). July 10th will be the one year anniversary of Jacob's first dose of chemotherapy and his first admission to the oncology unit (named Craycroft) and Children's Hospital Central California. And now some exciting news... Make a Wish Foundation called - Jacob's "wish" is about to be granted! Jacob's "wish" is to meet Natalie Portman, the actress who portrayed Padme Amidala (Queen Amidala/Senator Amidala/ Luke and Leia's mom) in Star Wars. We were contacted on Wednesday by Jacob's wish grantor, Danna, to confirm that we would be able to travel (presumably to Los Angeles) in the next couple weeks to meet with Natalie Portman. Make a Wish is busy making arrangements and we will (hopefully) get a call in the next week or so telling us what is going on. All we know for now is that Natalie has agreed to meet with Jacob and, according to Make a Wish, this is her first "wish request" and she is excited. We are hoping that this works out well for Jacob. Celebrity wishes, we are told, can take up to 2 years to happen, so Jacob is lucky to have something being arranged so quickly. - Christina 6/23/09 - Tuesday Tonight we had dinner with Jacob's Wish Grantors from the Make-A-Wish Foundation. They have arranged for Jacob to meet Natalie Portman (Padme from Star Wars) at George Lucas's Skywalker Ranch. They showed us the itinerary and we had a very special dinner at our favorite restaurant. The table was decorated with a Star Wars theme and they had small presents for Jacob and Andrew. We had an exceptionally sweet waitress who gushed over Jacob and added a special flare to the dinner. These very special individuals from Make-A-Wish have left me with a warm inner glow as I reflect on the kindness and true charity that they have shown my son. It isn't their job to fulfill wishes for children, they aren't paid to do this and they are not receiving special recognition, they volunteer because it makes a difference in the lives of children and their families. Tonights dinner wasn't a big extravaganza. It was very intimate, very personal, thoughtful and sweet. It was about Jacob. He's a very unassuming young boy who kind of struggled to understand why these two wonderful women had put effort into doing something special for him. What impresses me the most about Jacob's wish is not the specifics of meeting Miss Portman or visiting Skywalker Ranch (although it is cool), it is instead the kindness that these people are showing my son by taking the time to do something nice for him. It really warms my heart. --ST 7/8/09 - Wednesday We are coming up on the one year anniversary of Jacob's first admission to Children's Hospital for his mediport placement and first round of chemotherapy. The memories of that time are still traumatic for us. June 27th was the one year anniversary of when we first heard the word lymphoma. That day will forever lay heavy on my heart. But thankfully we now have something to counter-balance those bad memories. And that "something" is the granting of Jacob's wish by the Make-A-Wish Foundation. On June 26th, Jacob, Christina and I, went to George Lucas's Skywalker Ranch in Marin County where we met Natalie Portman. Jacob was truly treated like a VIP by everyone there. It warmed my heart to see Natalie focus on my son as we went on a tour of the Ranch. She really is a special person and after she left, Jacob was a little sad. He had grown quite fond of her in that short time and later told me that he felt like she was some type of special relative, like an aunt or something. And the rest of the people at Skywalker Ranch were nothing short of plain-out-wonderful -- especially our escort, Tracy. One of the highlights of the tour was the Lucas Archive. For a Star Wars fan this is the holyland and we went on a pilgrimage to Mecca. It was very, very cool to see the hundreds upon hundreds of movie props from George Lucas's movies. In the future when summertime roles around and we are reminded of the summer of 2008 and all of the trauma surrounding Jacob's cancer diagnosis and treatment, we now have some very special memories from the summer of 2009 to go along with them. Thank you Make-A-Wish, thank you Miss Portman, and thank you to everyone at the Skywalker Ranch. You made my little boy very happy. --ST 8/11/09 - Tuesday Today Jacob had another PET/CT scan. We will get the radiology report on Thursday when he has an oncology clinic visit. --ST 8/14/09 - Friday Jacob's PET/CT scan results are slightly ambiguous. Some areas "lit up" on the scan that the radiologist and oncologist say is probably normal lymphatic tissue that is rebounding after the heavy chemotherapy that Jacob went through. It is bilateral in nature. If it were cancer it probably wouldn't show up bilaterally. Only time and future scans will tell. The odds are heavily in his favor that he is cancer free and will remain that way. But as a parent of a child who has had cancer, it sure would be nice to have absolutely definitive results showing that he's done and the cancer is gone forever. But life is not like that and we don't have crystal balls to see the future. Only patience will tell. Each scan can only tell us so much. Sometimes stuff shows up on a scan that "could be" cancer but most likely is not. That's when we rely on the clinical judgement of the radiologist and oncologist (which has been exceptional so far) and they say Jacob is good. But for me, after what Jacob has been through, I sure would like to know for sure that he's okay. But the only way to know for sure that he's cancer free is to give it time and be patient. That's not always easy when it's my little boy we are talking about. --ST 8/17/09 - Friday Jacob is home from his first day of middle school! I hear it was quite a day, but he seems very positive. Just after we got home we received a phone call from one of his new teachers. She had spoken with the principal of the school and learned of Jacob's battle with cancer. She sounds very nice and encouraging. And Jacob liked her too. I think today has been harder for me than anyone else! I can't believe my little boy is in 7th grade! I'm just grateful that all of the teachers and staff have been so nice and helpful! Last Tuesday was Jacob's PET/CT scan. We got the results on Thursday at the oncology clinic. It was a little disturbing for me, but I'm trying to hold onto the interpretation given to me by the oncologist. Jacob's scan showed two areas of high activity, where his adenoid gland is. There were also several sets of lymph nodes that lit up on the scan. The lymph nodes are being called "reactive in nature", meaning the doctors are interpreting the finding as normal for a child recovering from intense chemotherapy. The oncologist told me that she believes the adenoid gland is recovering from the chemo, as well. The densities are bilateral (on both sides) and symmetrical (they match up) and she says it's just the adenoid tissue growing back from the heavy assault we threw at it last summer/fall. I have to say, I'm a little worried. I know, logically, that this is the oncologist's job and she's amazing at it (I know from personal experience and as a professional working with her). I know she interprets these scans everyday and she has seen this type of cancer many, many times. All that said, it's my child and I can't help but worry. Jacob's next scan will be in early December. A little later this time because of Thanksgiving. The oncologist said she doesn't see any reason to do the scan sooner, so I guess I'm going to hold onto her confidence and pray for the best. Well, it's time to listen to more middle school stories! Summer was an amazing non-stop adventure. Scott and I are looking forward to things slowing down a little in the coming months (we hope). - Christina 9/27/09 - Sunday Our entries on this page are becoming less frequent. It is a sign of putting this traumatic major life event behind us. My family is healing and becoming whole again. It is a good thing! Jacob's cancer is no longer the center point of our lives. He's doing well, seems healthy and is enjoying 7th grade. Christina and I were a little worried about how he would handle middle school. But we have been very pleasantly surprised. His grades are good and he has adapted well to his new school. At the beginning of the school year, Christina had a meeting with Jacob's principal and teachers to inform them of his history and health status. They were enthusiastically supportive of Jacob's needs. He has a medical excuse to take physical ed (PE) at his own pace because his endurance and stamina are not yet up to par. And the teachers are aware that he can become overwhelmed when there is too much sensory input, and that he may have a small issue with short-term memory. So far he has been able to take everything in stride, and like I've said, he's doing well. Really well. We had a very full and exciting summer. Jacob spent the summer of 2008 dealing with his cancer. We wanted to make it up to him and had lots of vacations and other events this summer that kept him busy. He's still excited about meeting Natalie Portman at the Skywalker Ranch. We had a very nice family vacation in Monterey. It was relaxing and good family bonding time. Jacob's aunt got married which was a fun family gathering. And at the end of July I took Jacob on his first camping trip. We spent two days (one night) at Courtright Reservoir in the Sierra Nevada Mountains. The 8,000 foot elevation really unmasked his lack of stamina. He had a good time but by the middle of the second day he was exhausted. As for me, I'm doing well. Jacob's cancer has been the most difficult and draining experience of my life. It affected every member of my family in different ways. For me it has been a journey of worry, fear, and intense effort to do everything possible to make sure Jacob would be okay (often to the exclusion of taking care of my own health and emotional needs). Once Jacob's body started showing signs of recovering from the chemotherapy, life slowly began to normalize. And it has only been in the last two months that I feel like my world is no longer preoccupied with Jacob's cancer. The background worry is still there -- Jacob is not completely out of the woods yet. But when I look at him now, I usually don't see my little boy who had cancer, but rather I see my son who is maturing into a fine young man with his whole life ahead of him. It has taken awhile to get to this point and it feels good. I have used these pages to journal my family's experience. It has served not only as a record of events, but also as an outlet for me to express my thoughts, fears and hopes. The entries are becoming fewer and farther apart which is a sign of our progress. Writing has been very therapeutic, but I no longer feel the need to constantly do it. Gratefully, there are now other things in my life to focus on. --ST 12/18/09 - Friday Yesterday Jacob had another PET/CT scan. Right after Thanksgiving he ran a fever that persisted for almost two weeks. We controlled it with ibuprofen and acetaminophen, but if we missed a dose or tried to go without, the fever would come back. Eventually we put him on an antibiotic for a secondary sinus infection and he got better. Because of this cold (or flu) his customary three month scan was postponed until he got better. It has been a little over four month since his last scan and we are eager to get the results today during a follow up oncology clinic visit. --ST 12/18/09 - Friday Evening Jacob's scan wasn't clear. There is something of concern in his maxilla. The oncologist wants our ear, nose and throat doctor to take a look. Jacob had a recent sinus infection which may have caused this issue, but the scan results are too ambiguous to ignore. There is also a suspicious "spot" that has shown up on his 4th lumbar vertebrae. Other than having the ENT doctor check Jacob out, the plan is to be vigilant, watch for overt signs of cancer, and have another scan in 3 months. It is not fun being in limbo. We don't know if this is an early sign of the cancer recurring or if it is just tissue that is metabolically active for some normal but unknown reason. --ST 12/31/09 - Thursday Jacob was seen by an ENT on the 24th. He thinks everything looks okay, but wants to do a biopsy of some of the tissue in Jacob's nasopharynx to make sure. The procedure is scheduled for January 26th. When we asked him about the spot on Jacob's spine he said it would be unusual for this type of cancer to show up there. --ST |
| 1/25/10
- Monday Jacob's biopsy is scheduled for tomorrow afternoon at 1:30 pm. Today he had a pre-op appointment with the ENT. It should be a straightforward procedure and Jacob has been through it before. But this evening he was pretty nervous. He is really dreading being poked and probed and operated on. --ST 1/26/10 - Tuesday Today Jacob had a procedure done by the ENT (Ear, Nose & Throat) doctor to biopsy some tissue in his nasopharynx. The doctor took four tissue samples and they have been sent to a pathologist. We should get the results in a few days. He said that the tissue did not look like lymphoma tissue. That is good news, but I want to get the pathology report so that we know for sure. The procedure went smoothly and Jacob is doing well. We are thinking about keeping him home from school tomorrow so that he has more time to recover. --ST 1/28/10 - Thursday The pathology report for the biopsied tissue came back negative. No sign of cancer, only normal tissue. This news has been a tremendous relief. Now the only question that we have is about the spot that showed up on Jacob's spine. His next scan will be in March. Hopefully the spot will have disappeared by then. This has been hanging over our heads like a gray cloud for more than a month. It has not been fun. Ever since we got the diagnosis of cancer in 2008, life and normalcy has felt like a very fragile thing. We had gone along for more than a year pensively feeling like Jacob was going to be okay -- hoping for the best, worried that the cancer would return, but generally optimistic. Then, in December, BAM! we got hit with some worrisome scan results. The area where the tumor had been was showing increased activity, and a spot had appeared on Jacob's spine. It shook us up pretty badly. The pathology results for the biopsy has lifted a heavy weight off of us. I'm still reluctant to say we are out of the woods, but at least we know that the area where the tumor had been is still clear and the cancer has not returned. I'm hoping the spot on his spine is just one of those random anomalies that will be gone when he gets his next scan. --ST 3/18/10 - Thursday Jacob had a PET/CT scan today. 3/22/10 - Monday Jacob had a follow-up exam today with his ear, nose, and throat (ENT) specialist who went over the scan results. No signs of cancer. I will give a more detailed report after Jacob has an oncology clinic visit tomorrow. --ST 3/23/10 - Tuesday The oncology clinic visit went well. The scan results are the best so far. The spot on Jacob's spine (which the radiologist has decided is on L5 and not L4) is not showing any metabolic activity and was most likely some sort of injury. This removes a very large weight that has been bearing down on us for the last three months. Overall, Jacob is doing well. He grew 3 cm since his last oncology visit. His endurance is slowly returning, but he still experiences periods of being "wiped out" after he is very active. He has adapted well to seventh grade and has good grades and recently made the honor role. He underwent a neuropsychiatric evaluation to determine if there was any short term memory issue (possibly due to intrathecal chemo) and it was found that there are no deficits. He sometimes gets overwhelmed by certain situations and anxiety minorly interferes with his ability to focus. But that is improving. The evaluation also shows that his visual-spatial reasoning is extremely good. When you look at Jacob he appears to be a normal 13 year old boy. You would never guess that he had cancer a year and half ago. Emotionally he is still recovering from all that has happened to him, and he sometimes struggles with the lack of understanding from his peers about his situation. It is hard for other kids to understand what it is like to face a life threatening disease and to go through the ravages of chemotherapy. It forced him to grow up faster than usual and in many ways he has lost some of his chilldhood. --ST  3/24/10 - Wednesday We have great news to share! Jacob's PET/CT scan results came back very positive. The inflammation in his nasopharangeal area (where his tumor was located) has decreased. That area was biopsied in January and there were no malignant cells. The ENT feels the slight inflammation that is present in that area is from allergies. In addition, the area we were perplexed and concerned about on Jacob's spine is no longer metabolically active (i.e. it is no longer absorbing the radioactive glucose at a high rate, like a malignancy would do). This means it is not cancerous and the oncologist feels it was an injury and he is no longer worried about it. This is the best scan we have had! We are so happy and relieved! We really appreciate everyone's concern and support! Thank you for praying for Jacob and keeping him in your thoughts always. Yesterday, after our oncology clinic visit, Jacob and I walked over to the oncology inpatient unit at Children's Hospital. Jacob spent 60 days as an inpatient during the summer and fall months of 2008. We spent a few minutes catching up with some of Jacob's nurses and doctors. Everyone remarked about how much Jacob has grown since his inpatient days! It was wonderful to see old friends and hear how much they loved seeing Jacob healthy and strong. - Christina 6/3/10 - Thursday Today was the last day of 7th Grade for Jacob. It went fairly well for him. He had a medical excuse limiting his participation in PE. Otherwise he seemed to enjoy his first year of middle school. --ST 6/22/10 - Tuesday Jacob had another routine quarterly PET/CT scan. He received 6 millicuries of radiation from the radioactive glucose. We should have the results next week. 6/29/10 - Tuesday The scan results came back very good. No detectable signs of cancer. There was a small amount of activity in a lymph node which is probably due to allergies and not to be worried about. His next scan will be five months from now instead of three because he is doing well and appears quite healthy. --ST 8/2/10 - Monday Jacob is attending Camp Sunshine Dreams this week. It is a summer camp for cancer kids and their siblings held at Huntington Lake in the Sierras. 8/11/10 - Wednesday Today was Jacob's first day of 8th grade. 10/23/10 - Saturday Today is the 2-year anniversary of Jacob's last dose of chemotherapy. He has come a long way in his recovery. His endurance is returning, but still not what it used to be. Even after two years we are still dealing with the recovery phase, and there are follow-up exams and other things that we are continuing to do. Otherwise he is doing well. 11/9/10 - Tuesday Jacob had a PET/CT scan today. His last scan was five months ago. This is the longest period between scans that he has had so far. We'll get the results sometime next week. 11/15/10 - Monday We just got the scan results back from Jacob's latest PET/CT: All is clear. No sign of cancer. That makes it officially two years cancer free. With Burkitt's lymphoma this is an important goal to reach. I think I can safely say, he's made it out of the woods -- the odds of a relapse are now very, very low. As a parent of a child who has had cancer I can say this is a BIG relief (which is a total understatement of how I feel). It's time to go to Disneyland! 5/24/11 - Tuesday It has been a little more than 2.5 years since my son, Jacob, completed his cancer chemotherapy. Today he has a routine PET/CT scan. The last one was 6 months ago and the results were clear, showing no cancer. The odds are heavily in Jacob's favor that this scan will be clear, but Christina and I always feel some apprehension. Let's hope for the best. [Note: the results came back clear] 8/15/12 - Wednesday The results from Jacob's most recent PET/CT scan are clear. He has been cancer free for almost four years. The probability of cancer returning at this point is very low so his oncologist has decided to change his full body scans from once every 6 months to once a year. This means he gets less radiation exposure which is a very good thing. Jacob is growing into a fine young man. He has started his sophomore year in high school and has good grades. His endurance is almost where it should be, but otherwise he his healthy and happy. 8/7/13 - Wednesday Jacob had his annual PET/CT scan and it was clear. He's been cancer free for almost five years. This will most likely be his last PET scan. From this point on he will only get an annual CT scan because that is all that is considered necessary (and what his insurance will pay for). 6/13/15 - Saturday Jacob has graduated from high school and is 18 years old. He made it to adulthood! His health is good, and he is a fine, young man. Jacob's oncologists at Valley Children's Hospital (formerly Children's Hospital Central California) have moved him into the Childhood Cancer Survivorship Program (PDF brochure). The goal of the program is to educate, empower and prepare survivors for adulthood and maintain their health as best as possible. This coming Fall he will attend college. In the years since Jacob completed chemotherapy I've seen tremendous growth in my son. The ordeal that he went through produced a maturity and seriousness that many of his peers did not possess. Yet at the same time he somewhat lagged behind them because a year of his life (and development) was consumed with battling cancer. It produced an odd mix which is evening out at time moves forward. We found it useful to have a 504 plan in middle school and high school. It gave him special allowances such as extra time to complete assignments, front row seating in class to help with noise and distractions, etc. Toward the end of high school he needed them less and less. Middle school was great and he had fantastic, caring teachers. One issue that we did come across was an apathetic attitude among some of his high school teachers toward the accommodations requested in the 504 plan. We found out that this issue wasn't unique to Jacob, but had become a school wide problem. Pressure from the school board and administration has improved the problem.  A Graduation Message to my son: "Jacob, you've faced some major challenges in your life. There was a short time when I wasn't sure you would be around to have a high school graduation. But you made it. You survived. Today may not seem as monumental as what you did more than 7 years ago, but it is an important milestone in your life. Enjoy your graduation, cherish the moment. Then look to the future. Embrace what it brings. Work hard. Learn as much as you can about as many things as possible. Love your family and friends without condition. Strive for integrety and be honorable. My hope for you is a long life filled with prosperity and happiness. And remember, always, that I love you." |
And the story continues . . .
| This is the story of my family's journey through my son's ordeal with cancer. You are free to share this information with others and I hope it helps other families who may be facing the samething. It is copyrighted so please do not reprint any portion without express written permission from me, Scott Toste. Thank you. |
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