Tuesday, December 13, 2011
Sunday, November 20, 2011
I apologize for the delay of communication lately. It's not for lack of action around here. In fact, it's quite the opposite. Jacob has been doing well since our last hospitalization in September, but we've had a lot of major decisions to make: whether we want Jacob do go through a second bone marrow transplant, and if so, when, where, and how would we have it done. We have made some progress in some of those areas.
First, after much inner conflict on my part, we have decided that we should try again. It was a very difficult decision to come to seeing Jacob eating well again and watching his counts creep back toward normalcy. I hate to start from square one and watch him suffer and face complication after complication all over again. I feel grateful that he is almost completely recovered from his transplant in April. He even got the okay to join everyone for our Thanksgiving dinner.
The second question we face is when would we want to go through transplant again. My initial decision was to wait a year or so to enjoy having him healthy and at home again. However, part of the complication that presents, is with CGD, there is a window of good health that is ideal for transplant. The patient must be free from infections, namely fungal (e.g. aspergillus) infections, otherwise, he can no longer be a candidate for transplant because of the increase in risk. Once a patient gets a fungal infection, the doctors are never convinced that it is completely gone, even if labs and procedures say it is gone. It is just too sneaky of an infection and could prove fatal if found in an immunosuppressed (BMT) patient.
So, thinking through that logic, we decided the sooner the better, as much as it pains me to say it. Jacob has never had a major fungal infection that has been detected. He's had some abnormalities on his lungs, swollen lymphnodes, that came back benign after a biopsy was performed pre (first) transplant. After Jacob underwent chemotherapy at Children's Hospital Los Angeles, there was a test that indicated that Jacob may have had a nonspecific fungal infection, but it was never determined what it was and was never detected again after that. The other minor issue that pushed us to sooner rather than later on a second transplant was that his doctor wanted to have his central line removed. It might sound silly, but I'd rather have his line removal be a sign of a successful BMT and recovery, not just a postponement of more dreadful things to come. So there you have it.
That brings us to where and how we'd like to have it done. After being in communication with a couple of other CGD moms, I really liked the sound of going to Texas Children's. They have transplanted 15 CGD patients, 10 of which were unrelated donors, with a 100% success rate. Those are amazing numbers! After I brought it up to Jacob's doctor, he suggested we also investigate Seattle Children's, as well as do a followup with the team at Children's L.A.
The team at CHLA admitted that they didn't know why Jacob rejected his graft. They had a few possibilities to explain it, but nothing for certain. They also mentioned that if he went through another reduced intensity transplant, he'd have a 25% chance of rejecting the graft again. However, if we did a full myeloid ablative protocol, which they were recommending, he'd only have a 10% chance of rejecting the graft, but a 25% chance of mortality. Neither option sounded very hopeful to me, and I left not feeling any better than before we consulted with them.
Incidentally, the BMT doctor and CGD specialist doctor we met with at CHLA noticed the rash that Jacob has had on his face recently (see the picture above). The CGD specialist wanted to rule out the possibility of a fungal rash and suggested getting it cultured. The BMT doctor thought it looked like graft versus host disease (GVHD) and got our hopes up slightly about the possibility that the donor cell count might have increased. Neither seems to have been the case. I had just figured it was the same sort of eczema rash common amongst GCD carriers. A blood sample was sent off to check Jacob's chimerism (the percentage of donor cells vs. his old cells), and unfortunately there was no evidence of improvement in donor cell engraftment. A dermatologist assessed Jacob and said the rash didn't look fungal.
A couple of weeks after our CHLA appointment, our doctor called saying he spoke to Seattle Children's and would have them give us a call because they are running a trial up there for which Jacob would qualify. Basically, they replace busulfan, which is an extremely toxic chemotherapy drug used in bone marrow transplantation, with a trial drug called treosulfan. Treosulfan does the same job of aggressively killing the immune system in preparation for transplantation, without the same toxicity to the liver and lungs, and is still a myeloid ablative chemotherapy, which increases the chance for engraftment. It is a preferred drug to high risk patients like Jacob and other children with immune deficiencies, because it does less damage to the body. They are in phase two of the trial and have tranplanted 28 patients in the past two years, 3 of which were CGD patients, who are all doing well. The mortality rate is 10%, versus 25% with busulfan. The one patient that they lost came in for a second transplant and was already suffering from severe GVHD. We are hopeful that Jacob is in good enough health from the start that he would pull through successfully. 100% of their patients engrafted. After speaking directly with the doctor conducting the trial, both Josh and I feel good about traveling there for a consultation and to meet with the transplant and immunology teams. We are waiting to hear about travel arrangements and such.
The other bonus about Seattle (and this may seem trivial), is that Kaiser has a contract with them so we would not have to file appeals to have our insurance cover the transplant, like we'd have to if we ended up going to Texas Children's. It's just one less concern to have to stress over, however unimportant it may sound.
Thursday, September 22, 2011
We ended up moving back to peds, which means the doctors feel he is heading in the right direction. The bacterial culture from this morning came back negative for the first time since we were admitted. That means the treatment seems to be working. Also, Jacob’s c. diff infection came back negative. While that is good news, I’m not holding my breath on that one since we’ve had negative results before only to come back positive again. The para influenza virus that Jacob was admitted for a couple weeks ago is still coming back positive, so they started him on an antiviral to help him. The positive reading could just be from proteins that the virus made in his blood, but they want to treat him for it just to be cautious. If the treatments go well, we could be home in 7-10 days. They are also treating Jacob’s central line by letting an antibiotic sit in there for 12 hours. They don’t want to take any chances of the bacteria sticking to the line and coming back. I’m glad they are being very thorough. Jacob seems to be feeling better. He can sit up on his own to play for a few minutes and he is happy, which makes me happy too.
Jacob didn’t have any fevers last night and slept well. I was even able to snap a few happy pictures of him before bed. He got blood yesterday which also helped to perk him up. It sounds like we might be moved back over to the peds floor today. Their concern right now is that Jacob's temperature is actually running low, which the doctor said could be a sign of infection.
Tuesday, September 20, 2011
Jacob was transferred to PICU early this morning after one of his blood cultures came back as gram negative rods, most likely e. coli. Needless to say, this is a very dangerous bacteria, and even more so for CGD patients. Jacob’s cells are helpless against this type of bacteria and he can only be cured through antibiotics. I’m glad we immediately brought Jacob in yesterday. He slept the entire day and night and didn’t break his fever until later this morning. It’s starting to rise again and we are waiting for a dose of Tylenol to come. He’s been awake today, albeit, miserable. His body must just ache because he cannot identify where it hurts, but he just cries at the slightest little thing. The fact that he’s awake is a step in the right direction according to his doctor. If he continues to improve, we will move back over to peds in another day or two to finish his treatment and recovery. In the picture, he is undressed down to his diaper to try to help bring his temp back down. This is Jacob's first hospital stay where he has slept in a big boy bed and it's so nice to be able to lie down next to him to comfort him. He seems to really like it, too.
Monday, September 19, 2011
Jacob is back in the hospital for the second time this month. I brought him in a couple of weeks ago because he was spiking a fever and for a BMT patient, that can be very serious. After a couple of days, Jacob seemed to be improving and there were no red flags in his work ups, so he was able to come home. He came back positive for a virus, but the doctor thought his body would be able to fight it off over time. Jacob really did seem to be doing better for the past week. We went in for his check up on Friday and his liver function tests were way off, however. The doctor thought it might’ve been from the virus, but wasn’t sure. He had planned on retesting him today or tomorrow, but Jacob was spiking a fever this morning and had thrown up a couple of times, so the doctor had us bring him back in to the hospital right away. Jacob is sleeping now and getting some iv hydration, along with some antibiotics. He took some Tylenol an hour and a half ago, but his fever has stayed the same. The doctors are considering moving him over to PICU so he can be more closely monitored.
We also recently found out that Jacob’s new bone marrow is almost entirely gone. His body rejected the graft and he has mostly his old cells back now. A lot of people ask where we go from here. The doctors have talked about infusing more cells from the same donor. This idea may have worked a couple months ago when he still had more donor cells, but now it is pretty much just a shot in the dark. Another option could be to do a second BMT. The thought of putting Jacob through that and starting all over again turns my stomach. He is still so fragile and weak from the first time around and from whatever he is fighting now, it just seems like a bad idea. I’m not even certain that his body could handle it. He definitely couldn’t handle it in the condition that he is in right now. I told the doctors we are not ready for that. For now, we just hope that his body heals and that his prophylactic medications protect him from CGD related infections.
Monday, August 08, 2011
My little fireball Ethan had his first day of kindergarten today. Although he won't admit it, I think he had a great time and is in for a fantastic year. What makes it extra special, is that he shares the campus with his Grandma Judy, who is a first grade teacher there. They got a chance to share a hug before school started this morning. It's a comfort to me knowing that the staff already knows about Ethan and has been looking forward to him attending school there.
Saturday, August 06, 2011
In our last post, Josh mentioned that the doctors had requested Jacob's donor in order to give Jacob a boost of cells to help strengthen his graft. Last Friday, Jacob's NBT test (the test that indicates how protected he is against CGD related infections) came back at 35%. This is great news! His past three NBT test results have gone from 29% to 30% to 35%. We haven't heard what yesterday's results are yet, but we are hoping that his score is still going up or at the very least, holding steady. According to the doctors, a person only needs about 12% functionality to be healthy, so 35% would be great! Because of this encouraging news, the doctors have decided to put a hold on readmitting Jacob for his boost of donor cells for now, as long as his NBT score holds steady, despite his extremely low 1.55% donor myeloid cells from his last chimerism test. Apparently, the NBT test result is more significant to Jacob's disease than the chimerism results. So, that is our biggest news.
I also wanted to mention that on Thursday, Jacob's NG tube clogged so badly that we couldn't push anything through it. Since it was useless and knowing Jacob had a checkup the next day and could get another tube, we went ahead and pulled it out. Since Jacob did such a good job taking his medicines orally on Thursday, the doctor said to go ahead and give Jacob a chance to start eating and drinking again. If he can eat, drink, and take medicine, then he no longer needs the nose tube. I'm happy to say that he has been doing wonderfully with these three tasks. Whenever he gives me a hard time with his medicine, I offer to put his nose tube back in, and that quickly resolves the problem. :) Ethan has also been a great helper when Jacob chooses him to administer medicine. Who would have thought!
Ethan starts kindergarten in two days! Last year we kept him in preschool for a second year to give him a chance to mature a little more, and now I feel like he is more than ready for his school experience. He turns 6 in October, so he will probably be the oldest kid in his class, which will hopefully give him a little bit of an advantage throughout his school years.
Monday, July 25, 2011
Jacob still has his central line and his NG tube in, and he's still on his regimen of medications throughout the day and nutritional supplementation at night via the NG tube. Kylene and I are basically Jacob's nurses now; we have been trained in administering his medicine every four hours during the day and operating his automatic feed machine at night, changing the dressing over his central line site and replacing the tape holding the NG tube to his face as often as needed, flushing his central line daily to keep it functional, replacing the caps on the central line lumens weekly, etc. Of course, we're also responsible for constantly reminding him to be careful not to be too rough or careless with his central line since we don't want it to pull out, and throughout the day we try to encourage him to eat. He's been doing better at eating since he's been home, although he promptly spits out much of the food that he tries—often onto the new carpet.
With all of the medical knowledge and training we've gained in recent months, Kylene and I joke with each other that we could practically be MDs or nurses. Now maybe we could add carpet cleaning specialists to our repertoire. But I digress.
On Friday, Kylene took Jacob to CHLA for a follow-up appointment with a BMT doctor, where we received the bad news: the latest sorted chimerism report shows that while the percentage of certain donor cells is very high (79.2–85.5%), the percentage of certain other donor cells has dropped to almost nothing (1.55–3.25%). According to the BMT doctor, the type of cell that has dropped to 1.55% donor DNA must be higher for Jacob to be effectively cured of CGD. This seems to contradict the 30% coverage against CGD-related infections from the last NBT test, which was done prior to the last sorted chimerism. They drew blood for another NBT test on Friday, but we found out this morning that they made a mistake when doing the test and will have to redo it (this is not the first time this has happened with that test at CHLA). Now we apparently have to wait until Jacob's next CHLA visit on Friday for them to draw blood for another NBT test.
In any case, the BMT doctor indicated that they would be contacting the donor to try to get him to donate stem cells from his blood that can then be infused into Jacob to boost his donor cell count. The donor would just have to agree to take GCSF (the white blood cell boosting drug that Jacob took for one day prior to a test once) for 5 days prior to the stem cell extraction, which should be painless unlike the bone marrow aspiration that the donor went through before. If the donor agrees to donate cells, Jacob would have to be hospitalized for an extended period of time again. If for some reason the donor refused (probably unlikely), Jacob would have to find another bone marrow match and go through the entire bone marrow transplant process all over again, chemo and radiation and all (although I'd guess that they probably wouldn't do the reduced intensity treatment this time). It was very frustrating to find this out just two days after Jacob got home. We already wondered whether they might have been in too much of a hurry to get him home given that the last sorted chimerism results were still pending and there was another C. diff test that needed to be done.
Speaking of which, we also found out this morning that after two negative results for C. diff after finishing his Flagyl treatment, the third test showed that he does currently have C. diff. Both Jacob and Ethan have been having C. diff-like symptoms, and we know that C. diff is highly contagious, so we're trying to figure out some way to get Ethan tested (they won't just prescribe Flagyl based on Ethan's symptoms and the fact that his brother has C. diff, and Kylene can't just bring in Ethan to be tested because she can't take Jacob out in public, and I work during the day so I can't take Ethan in either).
On the bright side, at least we get to have Jacob home for a few weeks or however long it takes before the donor can donate cells.
On the less bright side, my academic leave of absence ends August 14th, which means I have to get back into my Ph.D. studies just three weeks from today, and Jacob could be in back the hospital around then. I have no idea how I'm going to maintain my sanity and fit everything into my life; it's been stressful enough without having school studies and assignments on top of everything else. My next class covers statistics, so if anyone reading this is a statistics expert and would be willing to help me occasionally, please get in touch with me.
We continue to be in need of your faith and prayers as we go through this extremely stressful and trying time in our lives.
Sunday, July 17, 2011
Friday, July 15, 2011
The doctors have decided that any other testing they are monitoring can be done outpatient. Jacob has held steady at 30% coverage for his CGD while off immunosuppressants, so we will just watch to see if he needs a boost of donor cells or not. His doctors are happy with 30%, so we hope and pray that he holds onto that. He will have a lot of restrictions once he's home, like following a special diet, not having children visit, avoiding the sun, not being in public places. We basically have to avoid germs and conditions which could flare up his graft versus host. We are excited to have him home, but nervous about the extensive care he requires. He is coming home with a double lumen central line which needs to be cleaned and flushed daily. We also have to change the dressing at least weekly. He's coming home with his NG tube and a pump to run his formula, so we will have to learn how to set all of that up. Not to mention his myriad of medications to keep track of: antifungal, antibiotics, antiviral, appetite increaser, folic acid, etc. This is an exciting, yet a little scary, time, as I become his full time nurse.
Sunday, July 10, 2011
Tuesday, June 28, 2011
Sunday, June 19, 2011
Tuesday, June 14, 2011
We celebrated Jacob's 3rd birthday in the hospital and I think he had a fun time. I was in the room with Jacob, and Josh was outside the room with Ethan. Josh wiped off gifts to get ready to be in Jacob's room and Ethan had the job of handing them to Jacob. After gifts, the boys decorated a birthday cake in the doorway. Jacob had a lot of fun and as I was putting him to bed that night, he told me "I want to go home." We really miss being all together as this process continues to drag on.
Friday, June 03, 2011
Jacob's CT scan result came back that his lungs are clear! In fact, the problem that was identified 3 weeks ago has been resolved. By process of elimination, the doctor suspects he has a virus and that there is not much we can do for him. He is already taking antiviral medication, so that is about all they can do. Jacob is still coughing so hard that it makes him vomit. His appetite is non existent, so it's really hard to get him to eat anything. It sounds like the doctor is just waiting for him to start eating again before he can go home. She wants to try a different type of feeding tube called an NJ tube since Jacob threw up his NG tube two days ago when we tried that solution. The NJ tube goes down past the stomach and into the intestine a bit in order to keep it down even when he's coughing and throwing up. We will try the NG tube a couple more times next week before we resort to the NJ tube. I'm not comfortable taking him home yet, so I'm glad he is still here under professional care. His ANC has dropped really low as well, down to 440.
Tuesday, May 31, 2011
Wednesday, May 18, 2011
Jacob was supposed to start taking an appetite increaser medication yesterday, but was unable to swallow any. Oral medications are going to be a huge challenge. How do you get a three-year-old to willingly take yucky medication? We are going to try a sticker chart today. We may never get out of here if he can’t learn to swallow his medications. We are not completely opposed to trying an NG tube, so we will see. An appetite increaser would be great because he would then be allowed to come off of iv nutrition; one step closer to coming home. But for now, he might not be getting enough calories and the doctor might order him an actual increase in iv nutrition a couple times a week.
On Monday Jacob had a chest CT scan to investigate the cause of his persistent cough. Originally, Jacob was supposed to be sedated, but he did so well, they let him stay awake. He squeezed his eyes shut tight and I was able to stay right next to him and touch his legs and talk to him the whole time. I couldn't help but get choked up watching his sweet little face. I’m so proud of my little man for being so brave for something that was scary. Just as the doctor suspected, Jacob had swollen lymphnodes throughout his lungs. Jacob had a lung biopsy before starting his bone marrow transplant, and the biopsy came back normal; however, fungal infections are hard to detect and frequently sneak through undetected. The doctor figures that the swollen lymphnodes found before the bmt were in fact a fungal infection and now it has spread. We are hoping that his new functioning cells, along with the antifungal medication that he is on, will take care of the problem, but it is definitely a concern. The new cells could go overboard attacking the fungus and end up causing pneumonia. We are keeping a close eye on any new symptoms and Jacob will get a followup CT scan down the road to make sure the infection is not getting any worse.
Friday, May 13, 2011
Since the CT scan couldn't be done until Monday, Jacob had to get X-rays this morning to see if any problems could be identified before Monday. We don't know whether the doctor had a chance to analyze the X-rays yet, but I'll discuss it with the doctor in the morning.
Since Jacob's hemoglobin and hematocrit were low this morning, he received a blood transfusion. Thanks again to all those who have donated blood or platelets, or have tried to donate, or have wished they could but live too far away. If you missed Kylene's mention of it a couple blog posts ago, she said that Jacob does not need platelets at this time, but he may still need blood. Little did we know that he would need blood again so soon—today! If you have O+ blood, you can donate whole blood at Children's Hospital Los Angeles specifically for Jacob. After scheduling a time to donate, please sign up on our calendar. Here's the link.
We have a lot of questions right now; I literally have over a dozen questions to ask the doctor in the morning. We don't even know for sure why Jacob has started coughing and vomiting. A couple of theories have been floated, but no definitive conclusions have been reached yet. Jacob is on an additional medication today and restarted another medication to hopefully help reduce vomiting, but both medications are more about controlling the symptoms rather than curing an underlying problem. Kylene and I are very concerned about Jacob's health right now, and we hope we get some answers soon (and that the problems are curable).
This is a very difficult time for all of us, so we humbly ask that you please keep Jacob and our family in your prayers. We greatly appreciate your love and support.
Thursday, May 12, 2011
Friday, May 06, 2011
Tuesday, May 03, 2011
Jacob's WBC is .58 and the normal count is 3.5-10.9. White blood cells protect the body from bacteria, viruses, and fungi and help to strengthen the immune system. They go after the germs and eat them up!
Jacob's hair has been thinning since last Friday. I asked if we could shave his head to keep him from getting hair in his eyes, nose, and mouth, and all over his clothes and bed, but they said it would be too dangerous. Because Jacob's immune system is so weak, even the smallest little nick could cause a serious infection, so it is not worth the risk.
Jacob still has no appetite and has developed really bad incontinence. His bottom is so sore that last night the nurse had to give him morphine just to wipe.
Jacob's mouth looks good- no sores.
The past couple of days he's been rashy all over the upper half of his body. Could be graft versus host, could just be the engraftment taking place, the doctors are thinking the latter. Yesterday we treated him with Benadryl. I don't know what they will decide today.
The sinus culture from last week came back negative for the viruses they tested. Not to say that it isn't a virus, but it's not the serious ones that they test for here. Thankfully, adenovirus had not moved to his respiratory system.
Jacob is passed the risk period for VOD, and so no longer has to take his daily oral med, so the doctors decided to wait on the NG tube.
So, in order to go home, Jacob has to switch from his IV meds to all oral, start eating again, and have an ANC over 500. This is all still going to take some time, but I'm glad that he is progressing in the right direction.
Friday, April 29, 2011
Tuesday, April 26, 2011
So far, however, the May platelet donation calendar is pretty bare, and May starts on Sunday. As of right now, nobody is signed up for the first two weeks of May, and Jacob might need platelets or blood during that time. Please go to our calendar and sign up to donate platelets. Since many donors are only available to donate on weekends, please try to donate mid-week if possible. This will help spread out platelet donations, which is important; remember that platelets only have a shelf life of 4-5 days.
Thanks as always to all those who have been supportive of our family through prayers, platelet and blood donations, and helping or offering to help in other ways.
Wednesday, April 20, 2011
The hardest part right now is just waiting, waiting, and more waiting. Being in a hospital room for 14 hours/day and wearing all the isolation gear gets tedious, but I'm glad Jacob doesn't seem to mind being here. We watch a lot of cartoons because I run out of play ideas. I am finishing my fourth day in a row at the hospital and will be trading off with Josh tonight. I am looking forward to spending time with Ethan, who has been so amazing through all of this chaos in his life. It will be so wonderful to have our family back together again at the end of all of this. I miss that the most.
We have been greatly blessed in so many ways throughout this process. Thanks to everyone who is donating blood and platelets for Jacob, and for those of you coordinating efforts. You are an amazing blessing to him and our family and we are so grateful. It has been a humbling experience for us to be in this type of situation and we have been so touched by your charity. We can't thank you enough.
Saturday, April 16, 2011
Tuesday, April 12, 2011
The Fludarabine chemotherapy that Jacob has received yesterday, today, and will receive tomorrow has thankfully not caused any outwardly discomfort for Jacob. He is still eating well and has not had any fevers or chills with it. I am so grateful for this as I was anticipating nausea and vomiting with Fludarabine. I can't believe we are three days away from transplant. This morning he started on an immunosuppressant drug that will prevent his body from attacking his new marrow.
I was informed yesterday that he will receive both radiation treatments on the same day, five hours apart. Because of doubling his dose (see our previous post), he may experience hair loss and mouth sores afterall. He is receiving 400 centigray in one day and the maximum amount of radiation allowed for a person is 450, so he will nearly be at the max.
UPDATE, April 13th: Josh called the CHLA blood donation number to get more specific information about who can donate to Jacob based on their blood types, and how often an individual can donate.
If you have either O- or O+ blood, you can make whole blood donations that Jacob could use. Please note that whole blood has a limited shelf life (3-5 weeks). An individual may make a whole blood donation once every 8 weeks.
If you have
For further details on whether you would be a good candidate to donate blood or platelets, please call CHLA's blood donation center at (323) 361-2441.
Saturday, April 09, 2011
The other day a test and retest seemed to indicate that Jacob's heart might be enlarged. A doctor doing rounds this morning told me that the results of a more accurate test came back and his heart is apparently not enlarged after all. She commented that she noticed the hole in the top hinges of his heart, which had been discovered previously. I believe we mentioned before on the blog that while it sounds scary, a hole in the top hinges is usually not a problem, but Jacob will probably have annual visits with a cardiologist just to be sure his heart is working properly.
A little later this morning, one of the BMT doctors came to speak with me. He said that the quantitative test results on the adenovirus levels came back, and thankfully the level was so low that it didn't even register (the test only gives a result if the count is greater than 100). This was the good news. The bad news was that Jacob still has lymphocytes (a type of white blood cell, one of the body's defensive cells) in his blood, meaning that the Campath unfortunately did not eradicate them entirely. Prior to receiving a bone marrow transplant, all lymphocytes must be destroyed to ensure that the body does not attack the new cells. The doctor explained that the only way to effectively resolve this problem is to give Jacob an extra 200 cGy (200 centigray, also written as 2 Gy or gray) of radiation, ideally 5 hours apart from the 200 cGy they were already planning to give him on the transplant day, to kill the remaining lymphocytes. If the radiation oncologist prefers, the radiation treatments could be done a day apart, but the BMT doctor says two treatments 5 hours apart would be ideal. Four gray is a lot of radiation compared to X-rays or any natural exposure to radiation, but it's still pretty low compared to many types of radiation therapy.
As always, thank you for keeping Jacob in your prayers. Tomorrow (Sunday) we will be fasting for Jacob in addition to keeping him in our prayers throughout the day. You are welcome to join us in fasting for him, if you wish to. For more information on why and how we fast, you can go here and click on Additional Information, then read the sections titled "Purposes of Fasting" and "Fast Sunday," respectively.
Friday, April 08, 2011
Adenovirus is very common in young children; healthy children with active T cells typically just get cold- or flu-like symptoms, and after the body suppresses the virus, the symptoms subside indefinitely. It's very likely that Jacob had adenovirus in his body prior to hospitalization, but his T cells had been suppressing it, making it undetectable. The Campath chemotherapy on Tuesday wiped out Jacob's T cells, which caused the virus to become active, hence the detection on Thursday.
Potential symptoms of acute adenovirus infection include fever, runny nose, cough, sore throat, rattling sounds when breathing, discoloration of urine and presence of blood in urine, and other symptoms similar to those of pink eye, flu, and pneumonia. As of when I talked to Kylene this morning, she has not observed these symptoms in Jacob. In extreme cases where immunocompromised patients are not treated or when treatment of adenoviral infection is ineffective, it can even result in death.
Based on what I've read, Jacob's cidofovir treatment will likely suppress adenovirus and make it undetectable again until his new immune system can suppress it sometime after transplantation. However, as Kylene indicated in her previous post, cidofovir is not always effective against adenovirus. In my research I discovered that in a 2002 retrospective study, cidofovir was effective in about 75% of patients with adenovirus infections (31 out of 41 patients) who did not die of unrelated complications, although it should be noted that the severity of the infection and the dosage and length of cidofovir treatment varied. Of the 16 patients in the study with asymptomatic infections, 4 died of unrelated causes, and of the remaining 12 patients, 10 of them (83%) were treated successfully. One of the two who was not treated successfully "relapsed with adenovirus after discontinuation of cidofovir. The patient was not retreated and died of disseminated adenovirus disease." Forty percent of the 45 patients in the study developed toxicity, usually in the kidneys, so that's something we'll need to watch for. Note that the sample in this study is small, but the overall success rate of suppressing adenovirus is promising.
Thursday, April 07, 2011
Tuesday, April 05, 2011
Jacob had his Campath chemotherapy treatment today. It was administered over 6 hours to reduce side effects, but he did vomit a few times and had a fever for a little while. His temperature was back to normal the last time his nurse checked it. Jacob will be off chemotherapy for five days and then will start on a different chemo drug. Jacob is taking a long and much-needed nap after a very late night last night and an early morning today. Kylene also got to go back to our room at the Ronald McDonald House for a nap while I have been hanging out here at the hospital in case Jacob wakes up and needs one of us.
Last night we got Skype working on my iPhone so Jacob could see and talk to Ethan and my parents. Today Ethan is with Kylene's parents and got to go to the zoo with them. Depending on if and when Jacob wakes up from his nap (he might be out for the night!), we might see if we can do Skype again tonight while Ethan stays at Kylene's parents' house.
Wednesday, March 30, 2011
As Kylene mentioned recently, Jacob's donor had to reschedule the bone marrow transplant date, pushing Jacob's hospital admittance and chemo start date back a bit. We got a call on Monday from a Children's Hospital Los Angeles nurse to let us know that they were switching Jacob's chemotherapy treatment to a "Genetic Disease Unrelated Donor-Reduced Intensity for children less than 40kg," "a protocol from Seattle" that is supposed to have reduced side effects compared to the treatment they were planning to give him. I wasn't able to find anything about this online, so when I e-mailed the nurse for more information she replied that one of the CHLA BMT doctors we've worked with "is the guiding force for us using this protocol. She had heard the presentation of the protocol and its results in February at the ASBMT meeting." Jacob will apparently be the second patient at CHLA to receive this reduced side effect chemo and radiation treatment.
Also on Monday, the president of Northcentral University (where I'm earning my Ph.D.) e-mailed the student body about a new academic leave of absence policy allowing students experiencing hardships to take up to 90 days leave from school, and this policy will take effect next Monday, April 4th—incredibly, the same date as Jacob's admission to the hospital. A little over a month ago, just prior to the start of my current class, I had asked my academic advisor if there was any way that I could take a leave of absence during Jacob's two or more months in the hospital, but at the time the best the university could offer was a three-week break in between classes, which would not have helped at all since my class started on February 28th. Now, after receiving this e-mail about the new policy, I replied to the university president and my academic advisor and asked if there was any way that I could take a leave beginning on the date of the new policy, explaining that it was also my son's admission date. I was concerned that my request would be denied since I'm already in the middle of a class. However, I was excited to receive a reply from my advisor on Tuesday stating that he had spoken with the university's academic liaison and that she would approve the leave if I submit a request on Monday.
Recently we have looked at a couple of homes to try to find a place we can live on a more permanent basis after Jacob is out of the hospital (for now we are staying with my parents so they can help with Ethan). As Kylene already mentioned, last week we looked at a house in Alta Loma that seemed to be perfect for our needs in terms of the monthly rent price, cleanliness (which will be important when Jacob is out of the hospital since his immune system will be weak for a year after the BMT), neighborhood, and number of rooms. I received a call on Tuesday from the owner of the house, and he offered to let us rent it. We will meet with him on Thursday to sign the papers and get the keys! It will be nice to take our things out of storage and gradually start setting up our new home.
While some might view these as a series of coincidental occurrences that by random chance happened to work out for our benefit, we know better. =) We know that God is mindful of our needs and the trials that we are facing, and we see these blessings as evidence of the eternal love that He, our Heavenly Father, has for His children. No matter what happens in the coming months, even if things don't work out the way that we hope, we know that we can place our trust in our Heavenly Father's will and know that He has a plan for each of us.
I know that many of you who are praying for and thinking about our family come from a wide variety of spiritual or religious backgrounds. I would like to share with you an experience of a leader of our church when he was in the midst of extreme trials and persecution in March 1839—172 years ago this month. He struggled to know why he and others were having to endure seemingly unending and grievous afflictions. In humility he prayed and pleaded for deliverance, and in answer to his prayer he received a revelation, an excerpt of which follows (emphasis mine):
If thou art accused with all manner of false accusations; if thine enemies fall upon thee; if they tear thee from the society of thy father and mother and brethren and sisters; and if with a drawn sword thine enemies tear thee from the bosom of thy wife, and of thine offspring, and thine elder son, although but six years of age, shall cling to thy garments, and shall say, My father, my father, why can’t you stay with us? O, my father, what are the men going to do with you? and if then he shall be thrust from thee by the sword, and thou be dragged to prison, and thine enemies prowl around thee like wolves for the blood of the lamb;
And if thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good.As always, we are so thankful to each of you for keeping Jacob and our family in your thoughts and prayers. We feel the love and concern you have for us, and we wish we could adequately express our deep gratitude for your kindness and loving support.
The Son of Man hath descended below them all. Art thou greater than he?
Saturday, March 26, 2011
Sunday, March 20, 2011
We had so much fun last night at Josh's brother's wedding! We are so glad that we were able to celebrate with them and not be in the hospital on their special day. Ethan and Jacob had a blast on the dance floor. I haven't seen Jacob that wild in, well... ever, actually. He was so funny! Based on his behavior, I dare say he is feeling great. I have a feeling his next blood test will show that his inflammation has calmed way down. We go in this week, so we will see. Anyway, our new admittance date is April 4th and our transplant date is April 15th. Our donor needed to reschedule, so we are happy to comply. We are staying flexible and as for me, I am just enjoying these last couple weeks of having my family together. Please continue to keep our family in your prayers. They lift our spirits and keep us going each day.
Friday, March 11, 2011
Jacob's sedimentation rate in his blood is 48 and a normal range is 0-10. This indicates inflammation in the body. He is currently taking a treatment of low dose corticosteroids. This is supposed to calm down the inflammation. We will retest his sed rate in about a week and a half. New admission and transplant dates have been scheduled. He is to be admitted to Children's on March 31st, begin his chemo conditioning, and then receive his new bone marrow on April 11th. After that we are looking at a 2 month recovery (at least), which means he will most likely spend his 3rd birthday in the hospital.
We are currently waiting to hear on a date to have his line surgically put in before his admittance date. Josh and I will have to learn how to flush the line and care for it, which makes me nervous.
Jacob used to be a good medicine taker, but has developed an aversion to taking his meds since we've had to introduce a couple of new ones to his regimen this week. I am finding creative ways to get Jacob to take his new medicines, including hiding it in smoothies, yogurt, or even in his morning bowl of Cheerios. Life will be interesting when he gets out of the hospital and will be taking 10-12 different medications. Anyway, things are moving along and Jacob seems to be doing well at the moment, for which we are grateful.
Saturday, March 05, 2011
Wednesday, March 02, 2011
Monday he had an enlarged lymphnode surgically removed from his lung, and then had a colonoscopy on both ends. The lung biopsy required a drainage tube to be left in his side for about 24 hours to make sure he didn't get any swelling. The colonoscopy revealed that his colitis is back, not to the severity it was in '09, but nevertheless, his GI doctor may want to treat it with steroids again. Both procedures were successful, for which we are grateful. We got home yesterday evening and enjoyed sleeping in our own beds last night.
Today we had a followup with the cardiologist who determined that even with the small hole in Jacob's heart, his heart sounded good. He wants us to come in for an annual check up to make sure it doesn't get worse.
So, for now we are waiting to hear what the biopsy on the lymphnode reveals. If Jacob is indeed fighting some type of fungal infection, that will have to be treated and the bone marrow transplant will have to be put on hold. If it turns out to be benign, we will proceed with the BMT, depending on what the doctors decide to do about his colitis. They are in disagreement as to whether that needs to be treated first, or if the BMT is more urgent.
... One day at a time. We will post more when we hear the results of the biopsy.
We are grateful for everyone's continued faith and prayers in Jacob's behalf and have been touched by everyone's kind and encouraging words and deeds. We believe in the power of prayer and have felt added strength to get through each day.