Day +65 NJ Tube & Happy Father's Day

Since Jacob's NJ tube placement last week, he has gradually increased through the minimum dose of Pedialyte to the maximum, and then switched over to diluted formula and is now on full strength formula. He has tolerated the nutrition well, which has been a blessing. We struggled a little with medication through the tube at first because he kept vomiting afterwards even though it was being inserted all the way down in his intestines. We have found that if we slightly warm up his medications and water and do his medications very slowly, he doesn't throw up. Jacob is taking all but two medications through his tube now, so once we get those last two switched over and the doctors are happy with the levels of those medications in his body, we will hopefully be discharged. He is getting formula continuously through his tube, but the doctor wants to try increasing the amount of formula so we can take breaks off the tube sometimes. The formula seems to have helped resolve his diarrhea and has even triggered an awareness to eat again. It's not a lot, but at least he will eat a couple of crackers or something each day. We are grateful for everyone's continued prayers for Jacob's complete healing. We still have a long way to go with him, but feel like he is slowly making progress. We will get the results on another chimerism test this week to see how the new marrow is doing. We are hoping that it is thriving!

Josh was able to spend Father's Day at home with Ethan and they got together with extended family for dinner today. I'm grateful for my husband who is a terrific and loving father, for my own incredible dad who has taught me so many things throughout my life, and for my amazing father-in-law who is so kind and helpful. I love these men so much and am grateful to have them in my life.

Other good news:

*Ethan's transfer request to go to school where Josh's mom teaches got approved! It is also where Josh and his younger brother attended elementary school. We are so excited! He starts kindergarten on August 8th, I believe.

*Last week I got to witness the birth of my cute little nephew Colin! It was an amazing experience and I'm thankful that my little sis' invited me to be present for it.

Happy Birthday, Jacob!

Jacob playing with his new toys

Jacob is showing how old he is now.

He says this is harder than two fingers.

He is really concentrating.

Jacob is delighted to frost his cake with Ethan!

(Too bad he wouldn't eat any of it.)

Putting on the finishing touches!

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.

Yesterday Jacob had the NJ tube placed. It passed the test of not coming up when he vomited, like the NG tube did. After some complications with the tube kinking inside of Jacob, we finally got it working this morning and now Jacob is getting pedialyte through it. He's starting with only 1 teaspoon/hour to see how he tolerates it, and then it will gradually increase. He is still getting hydration through his central line until he is getting the proper amount of nutrition through his tube. Jacob is still getting used to having a tube taped to his face, but at least he hasn't tried pulling it out. He does seem sad about it though, which breaks my heart. He has barely said anything or smiled at all these past two days. I really wish he could have his big brother here with him. Ethan really seems to brighten Jacob's day the most.

Day +49 Possible Virus

The boys send each other a hug since they can't touch.

Say cheeeeeese!

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.

Dropping ANC and white blood cells

Sorry for the delay in posting an update. It’s easy to share joyful news, but hard to share our setbacks. Jacob’s GVH rash is pretty much gone, which is our good news. Now onto the bad news. Jacob is learning to take his oral medications. Some times he gets it down and keeps it down, other times we are not so lucky. Jacob is not interested in eating yet and he always falls far below our goal for liquid and caloric intake. Two nights ago Jacob’s cough started getting worse and his anc and white blood cell count have been dropping steadily the past five days. Six days ago his anc was 2580 and today it is 580. These symptoms are concerning to the doctor and ourselves because he seems to be fighting something. He hasn’t had any fever and his lungs sound clear, which could lead us back to the silent and sneaky fungal infection that the doctor suspected a couple of weeks ago. Jacob is getting a repeat CT scan today to see if the lung inflammation has gotten worse. If there are any large areas of inflammation, Jacob may have to get another lung biopsy to see if the doctors can identify the problem and treat it more specifically. He also had another sinus rinse this morning to see if they can identify a problem there.

Day +33 Functioning Neutrophils!

We got some great news yesterday. The cell that was functioning at 0% in Jacob’s old immune system, called a neutrophil, is now functioning at 96%. That means the donor’s cells are working in Jacob’s body! Other news we got was that 78% of Jacob’s cells are donor cells and 22% are his old. The donor’s percentage should continue to grow as it takes over Jacob’s weaker cells. In 6 months or so it could reach 100%. That is what we are hoping for. The doctor sent off a test today to find out what types of cells are left of Jacob’s. That will take some time to come back.

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.

Another Difficult Day

Jacob has just had two rough days in a row. As Kylene mentioned, Jacob threw up 6 times yesterday while I was at the hospital with him. This morning things seemed better at first: very little coughing and no vomiting, and he hadn't vomited at all while he was sleeping last night. Later today, however, the vomiting returned (4 times). He had a fever tonight before I left: 100.2° F (37.9° C), which is a mere 0.1° C (0.2° F) below what they consider to be a fever spike. When I spoke with the doctor on Thursday afternoon she said that if Jacob started spiking a fever it would be cause for concern and they would have to reevaluate his situation, so hopefully the main BMT doctors will take the fever into consideration when they discuss Jacob's situation in the morning. I just called the nurse, and she said that the fever has gone down and that the resident instructed her to only do further tests if his temperature reaches exactly 38.0° C or higher, as per their usual procedure.

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.

Four Weeks Post Transplant

I can't believe how quickly Jacob's condition can change from one day to the next, in this case for the worse. On Wednesday evening, Jacob started coughing and then threw up. It was strange because he hasn't thrown up for a long time, but an isolated incident didn't seem to be much of a concern, although I did notice his appetite was nearly gone that day. He did mention a couple of times that his tummy hurt, but I thought it might've been from not eating for so long and then starting up again. Yesterday, the coughing continued and he threw up six times by the time Josh had to leave last night. His doctor is concerned that it might be a fungal infection, since those are the hardest to detect and clear up. The doctor ordered a sedation and a CT scan to check for a fungal infection which will probably take place Monday. The doctor thinks his enlarged lymphnodes that he had biopsied in February may in fact have been an infection, but slipped through undetected. Please continue to pray for Jacob. My heart is breaking. It seems like just when things start looking hopeful for Jacob we have a major set back. All Jacob's numbers are down today. ANC 1310, platelets 159, white blood cells 1.92, hemoglobin 8.6. Sorry to share depressing news, but we need to rally our faith and prayers in Jacob's behalf. I've seen the power of prayer work in the past.

Day +27

Here are pictures from Ethan's visit last week:

Jacob's ANC really jumped high this week, all the way to 1800. Part of that was the steroid treatment he had to receive for his rash. They are now lowering his steroid and his ANC is 1770, which we're still happy with. His white blood cells are growing and his platelets are almost at 200! For our donors signed up for the rest of May, Jacob most likely won't need platelets, but other children at the hospital will definitely benefit if you still want to come in. If anything, Jacob may need whole blood from time to time. Other exciting progress for Jacob this week is that he is allowed to eat milk products again since his ANC is so high. Jacob was excited with his new food choices at first and was happy to eat yogurt, cheese pizza, Cheetos, quesadillas, string cheese, etc, but these past couple of days, the excitement has worn off and he's not eating so well again. However, the doctors still have been tapering Jacob's TPN, first from 24 hrs to 18 hrs, then to 12 hrs just at night, and now they are going to take off the lipid portion of the TPN. Hopefully this increases his appetite and desire to eat.

Yesterday blood was taken to test which bone marrow is growing. Last week they told us they would wait until the 16th to run that test, but for some reason decided to do it this week. The test is high tech and will take several days to get results back.

The adenovirus which Jacob has been receiving a weekly treatment for, is now coming back negative! This is good news and Jacob will not have to get the treatment this week. The medicine for adenovirus is very toxic to the kidneys and the oral medication that he's supposed to take along with it to protect his kidneys is very bitter and makes him gag and throw up. So we were very happy to hear that he is off the treatment for now unless they find the virus in his blood again.

For the first time ever in the hospital, Jacob actually enjoyed his bath yesterday. He sat down and played and splashed water all around. That was short lived though because Josh said today he didn't like his bath again. Oh well, baby steps.

Day +21

Additional information we found out since our last post: Since Jacob had reduced intensity chemotherapy, the doctors will wait until 30 days post transplant to test to see which marrow is growing. That puts us on May 15th. Also, the doctors increased Jacob's steroid dose to get his rash under control. The steroids caused Jacob's numbers to skyrocket yesterday and today. His ANC is 950 and his white blood cell count is 1.28. His platelets are 120 and his Hemoglobin is 11.5. These numbers would be cause to rejoice, but I think they are artificially high because of the steroids. But still, I'm happy to see them go up each day! :)

Day +18 ANC

Jacob now has enough white blood cells to start calculating his ANC. A normal ANC is 2000-3000; however, since Jacob received chemotherapy and radiation, his ANC will most likely not reach normal until maybe a year from now. The goal is for him to get over 500. Right now he is at 210, same as yesterday. The ANC is a calculation of Jacob's white blood cell count (WBC), Polys, and Bands, (all components of the immune system) so it shows an overall reflection of how Jacob's immune system is doing. So each day when I get here in the morning, I like to find out what Jacob's ANC is to get an idea of how his immune system is progressing. Once Jacob goes over 500, hopefully by next week, he will be tested to see which bone marrow is growing- the donor's or his old marrow. We hope that it will be the donor's.

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.

Other updates:

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.

Day +14

It's hard to believe it has been two weeks since Jacob's transplant. The past few days have been difficult. He has almost completely stopped eating and has to receive 24 hour nourishment through his iv. Again, the doctors aren't worried and say that this is completely normal at his stage of transplant. He is receiving the nourishment he needs to continue to heal.

Jacob has had a runny nose for the past week and we hope that it isn't anything serious. They did a sinus culture on him Wednesday and so we are waiting to hear back on the results of that. His nurse said sometimes children with low blood counts get runny noses, so hopefully it's just that. On the other hand, it could be the adinovirus that was discovered in his blood after his first round of chemo. He is still receiving a weekly treatment for the virus, but it is possible that it has moved to his respiratory system.

Other discouraging news is that Jacob has gotten worse with taking his oral medications, which are important for protecting his liver and kidneys from being damaged from all his other medications. He either throws it up, spits it out, and just holds it in his mouth until he cries and then it leaks out. Today the doctors are discussing inserting a tube through his nose that would go down into his stomach. This way he would get his oral medications without having to taste them. It may sound like a simple and practical solution, but the last time nurses tried inserting a nose tube (back in '09), it scared him to death, wouldn't go in, made his nose bleed, and ultimately failed to insert.

I can tell that Jacob has been feeling tired and a little down since Wednesday. I think his little body is fighting hard to begin grafting in the new marrow and it wipes him out. It has been a hard week and although I am at home with Ethan today and tomorrow, my heart and mind are still at the hospital with Jacob. I know Josh will be exhausted after we trade off again Saturday night.

Thank you for your continued prayers and for all those who have donated blood and platelets and for those who have wanted to and for everyone who has served our family in other ways. We feel of your love and concern and know we are extremely blessed.

Platelets and Blood This Week

The latest word from the doctors is that Jacob will probably need blood and platelets this week.  They won't transfuse today, but his counts are getting low so they may give him a transfusion as soon as tomorrow.  Looking at the platelet calendar, it appears that Jacob should have a sufficient supply of blood and platelets throughout this week, for which we are very grateful.

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.

Hospital Life

Jacob is chowing down on a bag of pretzels as I write this. He is doing great for a post-BMT patient. His immune system is very weak, practically non existent, so he has to stay in isolation throughout recovery, which is normal. His blood count numbers continue to drop, which is also normal. They will continue to drop for the next couple of weeks, and then should slowly start to come up. When they get to a certain level, Jacob is safe to go home. His immune system won't be fully recovered for 6 months to a year, so we will have to continue to be very careful about germs. His nurse on Sunday said you'd never know he just had a bone marrow transplant as he was energetic and playful throughout the day. He still has his hair for now and he hasn't developed any mouth sores. He also hasn't been nauseous since transplant day and the following day, which has been good because he can eat, which most bmt patients won't do. Jacob is receiving 12 hours of nutrition through his iv to fill in any gaps in his diet.

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.

Platelet Donation Calendar

First here's an update to Kylene's blog post from earlier today.  Although Jacob's was in goods spirits throughout the day, he began the day with not much of an appetite and was unable to keep any food down until the evening.  Jacob was willing to entertain the idea of eating and even asked for specific things, but when it came to actually eating he had a hard time taking any bites.  He only ate a bite or two at breakfast and one bite at lunch, and both times he threw up shortly after eating.  According to the dietician who came to check on him earlier, this is pretty normal after a bone marrow transplant.  If Jacob doesn't start eating and keeping food down consistently, they will put him on intravenous nutrition until he improves.  I'm happy to report that Jacob did great with eating his dinner tonight (his appetite seems to have returned) and he didn't throw up even after his "yucky" oral medicine and mouth cleaning, so hopefully the eating and vomiting problems have passed.

I have created a platelet donation calendar on Google Docs.  Anyone can edit it and add themselves to the calendar.  To avoid confusion, the calendar is for platelets only, not whole blood donations.  Platelets have a very short shelf life (4-5 days) so it is important that platelet donations are spread out.  You can donate platelets regardless of your blood type.  Please make sure you qualify to donate, and schedule with the donation center at (323) 361-2441 before putting your name on the calendar.

If you have type O- or O+ blood you can make a whole blood donation specifically for Jacob.  Whole blood has a shelf life of 3-5 weeks, and an individual can donate whole blood again 8 weeks after the last whole blood donation.  Rather than having a second calendar, please just let Josh and Kylene know when you're donating whole blood and we can give you further information on how to ensure that the donation will be reserved specifically for Jacob.

Thanks to all of you who have been keeping Jacob in your prayers and have been willing to donate blood and platelets.

A New Beginning

Yesterday was a new birthday for Jacob. His new bone marrow dripped in through his i.v. over the course of 8 hours. All of his vitals look good and he is happy today. Now it is a waiting game to see when the graft begins to take place and his body starts producing marrow on its own. We are praying he does not get graft versus host disease or develop any other complications. If things go smoothly, he should be able to come home in about 2 months, shortly after he turns 3.

Putting Jacob through two sessions of radiation treatment was tough yesterday. I couldn't help but second guess the decision we had made to go forward with this whole thing, but of course by this point we just had to keep going. The radiation made him nauseous and exhausted, so it was hard seeing him like that. By around 8:30 last night, he woke up hungry and happy, so he seems to have bounced back quickly.

We have been overwhelmed with the outpouring of volunteers willing to donate blood and platelets to Jacob! We never anticipated such a huge response. We are truly truly blessed and are so grateful for all willing volunteers and those who are working on coordinating efforts. Because the response has been so huge, Josh and I are working on a link to a googledocs calendar that we will link to from our blog that you can sign up on and see when others are donating. This way donors can be spaced out throughout Jacob's hospital stay and those precious donations don't go to waste. We are hoping to have it up by the end of the day. We love you and are deeply touched by how much people care and serve in time of need.

Day -3 Donate Platelets!!! [Updated x2]

As I write this, Jacob is receiving a blood transfusion. The first of possibly many to come during the transplant process. I'm so grateful for people's goodness and generosity, for without blood donations, many innocent patients could not live. This is the second time in Jacob's life that he has needed blood, and it is probably not his last. As I learn more about Jacob's procedure, I now understand that not only are blood donations vitally needed for these little ones to make it through, but platelets as well. I was just informed that the hospital's platelet supply is extremely low. My nurse even commented that it is "scary." I know many of you are praying for Jacob and have wondered what else you can do to offer your help and love... Jacob, as well as other children going through chemo on our floor need platelets to live. Please call Children's Hospital LA at (323) 361-2441 for questions or appointments concerning platelet and/or blood donations. This is a very real way to put your good intentions to good deeds. You can donate directly to a bank for Jacob if you specify.

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 A-, A+, AB-, or AB+ blood any blood type, you can make platelet donations that Jacob could use. (We've gotten several different answers, but on April 15th we finally got clarification that blood type does not matter for platelet donations at Children's Hospital.) Please note that platelets have a very short shelf life (up to 5 days). An individual may donate platelets as often as every 3 days, but CHLA recommends waiting longer in between platelet donations (the American Red Cross suggests once every 7 days).

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.

Day -6: Lingering Lymphocytes

Kylene is at home with Ethan today, and she has been getting started moving things out of storage and into our new rental home. Meanwhile, I'm on hospital duty for the weekend.

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.

More Information on Adenovirus

Yesterday Kylene blogged that adenovirus was found in Jacob's blood, and that cidofovir (sigh-DOFF-o-veer) and probenecid are being used to treat it.  I did a little research to see what I could find out about the potential effects of adenovirus, particularly in immunocompromised patients, and the effectiveness of cidofovir against it.

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.

Day -8

Today adenovirus was discovered in Jacob's blood. This is scary because the first round of chemo wiped out his T cells, which are needed to fight the virus. His doctor ordered cidofovir and probenecid to hopefully wipe out the virus. He said patients normally respond well to this treatment, but it is not 100% successful. We are going forward with transplant because he already had chemo and so now it is too late to go back. We are staying hopeful that the medicine will work.

Also, an EKG was done today which came back indicating that the right side of his heart was enlarged. This triggered an order for an echo cardiogram and a repeat of the EKG, hoping that the first reading was a mistake. We are waiting to hear back on that.

Jacob had an eye exam today as well. For once, his test results came back normal!

I have a laptop set up in Jacob's room now, so we can stay in better contact with everyone. We can also Skype. For family members and close friends, if you are interested in visiting Jacob, this would be the best week to do it since his chemo resumes on Monday. He looks like he is feeling well and loves to play. Just remember, except for grandparents, you can only play with him through the plastic curtain.

First Day of Chemotherapy

Jacob was admitted to Children's Hospital on Monday evening. We had to wait all day for his room to become available, so Kylene and I had plenty of time to get packed, drive out to L.A., check into the Ronald McDonald House, and have dinner with Jacob at the CHLA cafeteria prior to taking him to the clean room where he'll be living for the next two months or more. Kylene and I have been busy putting up laminated pictures of family, Jesus, temples, Disney and Pixar characters, and other things he likes, and we've also been carefully cleaning his toys, books, and movies so they'll be safe for him to have in his room.

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.