Friday, April 29, 2011

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.

Tuesday, April 26, 2011

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.

Wednesday, April 20, 2011

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.

Saturday, April 16, 2011

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.

Tuesday, April 12, 2011

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.

Saturday, April 09, 2011

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.

Friday, April 08, 2011

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.

Thursday, April 07, 2011

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.

Tuesday, April 05, 2011

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.