Day +110

Our flight is booked and we are heading home on Tuesday. Hooray!

Jacob has been doing well. He had his adenovirus treatment on Monday and the doctor wants to do one more next Monday before we leave. Even though the latest adeno count is 3200, she thinks since his kidneys are handling the treatment, it would be the safest thing to do. She told me she has had patients die from adenovirus, and since it was found in all of Jacob's systems, blood, urine, gi tract, and respiratory, she wants to give him as much protection as possible. Jacob also got some gcsf this week to boost his ANC, which has been slowly declining the past couple of weeks. Tuesday he got an ivig infusion and had his final review conference. Monday will be his last appointment here and then we will go home the following day.

He is a long way from having a functioning immune system, but he is stable enough to go home and continue treatment there.

Day +105 Homeward Bound

We successfully made it out of the hospital on Tuesday. It wasn't easy though. J's ng tube clogged at 3am and I worked on trying to unclog it until he woke up at 8am. We finally gave up and just had to pull it out. That tube had lasted about 2 months. The nurses tried getting a new one in 3 different times, one of the attempts lasting for 45 minutes, but he was clamping down his throat and gagging so it kept getting stuck in his throat. It was heartbreaking. Jacob even was saying he would just take his medicine in his mouth, which I was willing to let him try, but after another 45 minutes he had only been able to swallow 3-4 of his 15 morning meds. It just wasn't going to work. Before the third attempt, they gave him a dose of adivan to relax him, but it didn't help. They tossed around the idea of doing it under sedation, but that would mean we'd have to stay another night because he'd have to be npo. Around 1:00pm, the two nurses who had been trying finally gave up and called in a third. She was able to get it in on her first try. It was a huge relief to get it in. Hopefully by the time this ng tube wears out or clogs, he will only be on a few meds and be able to move on without one.

It will be six months, almost to the day, when we will be heading home to be reunited as a family. Our last appointment up here should be July 30th. We are making preparations to fly home on July 31st. We already have an appointment scheduled with Jacob's home doctor for August 1st.

Jacob's Epstein Barr Virus load has come back undetectable the last couple of times, so it seems he's got that under control. I'm so glad he didn't have to get treated for that. His latest run on the adenovirus came back at 8,300. Can you believe it was 9.4 million just a few weeks ago? The infectious disease doctors say we can stop treating it when it drops under 10,000, but his out patient dr wants to do one more cidofovir treatment on Monday, then hopefully he will be done with that. I worry about his kidneys.

Considering everything that has happened in the past month, I consider it a miracle that he is well enough to go home at this point. The doctors here have been incredible. Their expertise and experience is beyond anything we ever could've hoped for. I'm so grateful we came here for Jacob's transplant. I am excited to go home, but sad to have Jacob leave their care.

Happy Day +100 Dearest Donor...

Today is another huge milestone for Jacob's recovery.  It's usually evident by this point whether or not a transplant was successful.  Each day we can breathe a teensy bit easier hoping that Jacob is actually successfully cured.  Of course, it can still take a year, some times up to two years, for his new immune system to mature enough to fight off germs properly.  But each day from here on out makes it more likely that he will hold onto his new marrow.  For now, we have to keep him away from crowds and other potentially germy places.

We aren't allowed to meet our donor until one year post transplant, and only if she is interested.  However, we can send her a note as long as it doesn't reveal personal information about us.  This is what we are sending to her:

Dearest Donor,

It has been 100 days since our precious little boy was infused with your life-saving bone marrow.  Your cells are happily engrafted and already working miracles for him.  Our gratitude is beyond expression for your generous donation and sacrifice.  There is no greater gift that a parent can imagine than to give their little child a chance at a rich and full life, and now thanks to you, he will have that gift.  My husband, other son, nor myself, were matches.  We are filled to the brim with appreciation and love for you for giving our son what we couldn't give him.  My husband and I are registered bone marrow donors, and we hope that we will one day be able to pay forward this beautiful, heroic gift of life that you have given to our family.  You are our hero!  We'd love to get in touch with you as soon as it is allowed.

Love,

Our Grateful Family

We are still scheduled to be discharged tomorrow.  Jacob's adenovirus result from Friday came back at 40,000, down from 450,000 last Monday.  We will get another viral load update this evening.  He gets another dose of cidofovir for the adeno tomorrow morning before discharge.  Details of our return to California are still being worked out.  Jacob's doctor here (Dr. Carpenter) needs to contact our doctor at home (Dr. Cheng) to see if he will be comfortable taking on everything that Jacob is still being treated and monitored for (adenvo, hypertension, ebv, c diff, gvhd, etc...)  Then he will contact the out patient doctor (Dr. Delaney) to give her his recommendation based on what Dr. Cheng wants to do.  So, there are still a lot of details to work out, but it will work out.  

Day +97

Jacob's EBV count dropped from 2800 on Monday to 87 yesterday.  His immune system did that all on its own.  This is fantastic news.  They will not need to treat with Rituxan at this point.  I'm sure they will continue to monitor him to make sure he can keep the counts in check.

We will have a new adenovirus count this evening.  Monday he was at 450,000.  Hopefully, it continues to drop.

The team is working on having us discharged next Tuesday.  Then we could be heading home to California as early as the following week.  I'm so relieved that it looks like we will be back in time for Ethan to start school.  I missed the second half of his kindergarten year and that was hard for me... and for him, too, I imagine.

Thank you for your continued prayers and support.  They mean so much to us.

Day +95

Sadly, Josh and Ethan had to go home yesterday.  It's just the two of us again.  Having Ethan here did wonders for Jacob.  It helped him feel like a normal kid again, laughing, playing, bossing his brother around, and even walking a little.  Who would've thought how therapeutic a big brother could be.  I'm already missing my spunky Ethan, too.  We'd keep him in Seattle if we had another adult up here to help me.

We are still in the hospital.  The good news first: Jacob finished with his inhaled ribaviron treatment on Sunday.  On Monday, we found out that the adenovirus dropped from 2.2 million to 450,000.  It feels good to finally be on top of that.  I don't know if I mentioned earlier, but his c diff infection came back negative last week, which was also nice.  His tummy seems settled and he is eating wonderfully.  He is completely off the pumps, except for night time hydration.  If that were the end of the story, we'd probably be getting discharged soon, but...

Now for the bad news.  Jacob has another virus called Epstein Barr Virus, or EBV, coming back positive.  So far, he doesn't have any symptoms.  This is another virus that can reactivate due to a low T cell count and it was most likely passed on to him from his donor.  Last Monday it was 300, Friday it was 800, then this Monday it was 2800.  They haven't done anything yet, hoping that his body can keep it in check, but I'm not expecting much based on his history.  If Thursday's result comes back at 5800 or higher, they will have to treat with Rituxan.  EPV is found in the B cells and Rituxan will wipe out all his B cells for 6 to 9 months, giving his T cells more time to grow and mature.  Of course there are more risks involved with not having any B cells.  For now, they are keeping him on a low level of immunosuppression, hoping to keep the gvhd in check, while at the same time, giving his T cells enough of a chance to do their job.  It's a delicate balancing act that may or may not work.

We were supposed to be moving back home next week with Day +100 right around the corner, but it just wasn't meant to be.  I wonder if any patients ever actually get to go home on their 100 day mark.

Day +91

We got encouraging news yesterday.  Jacob's adenovirus count is finally dropping again.  It went from 9.4 million copies on Monday to 2.2 million copies from Thursday's sample.  He will be tested again on Monday.  For now, he continues on the weekly Cydofovir treatment and he also had to start on a respiratory Ribaviron treatment three times a day.  That has been something of a hassle, but glad that they are pulling out all the big guns.  In order to administer Ribaviron, he has to breathe through a mask hooked up to a ventilator and then have a clear plastic tent draped over his bed with a fan on top of it to clear out any extra medicine in the air.  He has to sit under the tent with his mask on for 2 hour intervals.  He then gets a 6 hour break, then has to do it again.  The middle of the night treatments have been the hardest.  He can't suck his thumb with his mask on and so has a very hard time sleeping through the treatments, even if it's 3am.  Thankfully, the treatment is only 5 days, so he should be done early Monday morning.

The highlight of our week has definitely been having visitors.  First, my parents and Ethan came up.  Then on the 4th of July, Josh flew up and is still here with Ethan.  Having family here has certainly perked up Jacob and me.  I have enjoyed getting breaks from the hospital room and spending some one on one time with Ethan.  

I came across this picture from Ethan and Dan's visit in May when Jacob was out of the hospital.  We were racing them into Target and it had me cracking up.  They were just too cute for words. 

Day +88

J's biopsy came back positive for mild gvhd. They have to keep him on some steroids to hopefully prevent it from making his viral infection worse. Jacob received a blood transfusion and ivig yesterday. He had a fever last night, but it broke on its own and he woke up happy this morning, asking to play with Ethan. Having them here has lifted his spirits so much!

Day +87

Our good news yesterday was short lived. J's adeno jumped from 200,000 copies on fri to 9,400,000 copies today. The cydofovir hasn't done a thing. They think the steroids boosted the virus, so they are putting him back on a tacro drip and getting him off the steroids. He also started on the higher dose, once a week cidofovir last night. I hope his kidneys don't get damaged. We should get his scope results today, but the visual looked good. Still praying for no gvhd so he can come off his other immunosuppressant, too. Being off immunosuppressants might give him a fighting chance.

My parents and Ethan are here for a couple of days. I thought I was holding myself together and staying strong throughout this whole thing, but when I saw my family at the airport, I wept like a little girl. I realized how much I missed Ethan and having my family together, and just the whole gravity of Jacob's condition came crashing down on me at once. I just needed someone to hold me and tell me it's all going to be ok. I didn't realize how alone I was. I know a lot of people pray for us and cheer Jacob on behind the sidelines, but I have just been very isolated in a physical and psychological way for a long time now. Other people my age are busy with chasing dreams, careers, traveling, getting married, being pregnant, and raising healthy children. I'm just fighting to keep my child alive. It's hard not to be envious, but I just try to stay focused on getting Jacob through one day at a time. It was never my desire to participate in the medical community. I never wanted to be a nurse or doctor. I wanted to be a mommy with lots of kids. Yet here I am, placed in this life, and I feel it is the most sacred of privileges to care for, fight for, and advocate for my little boy. You can never understand what it's like unless you've lived it. The only Ones who I know can truly comprehend the weight in my heart are my Heavenly Father and my Savior. It's been a learning process to turn my entire will and Jacob's fate over to Them. I've never cared or wanted something so deeply than to have Jacob made whole, but I have to accept that what I want does not matter if it's not Their will, and that is truly the hardest thing to learn and trust.

Day +86

No fevers last night, so that's good news. Other encouraging news is that they redid Jacobs abdominal X-ray and there is no sign of pneumatosis! That in itself is fantastic. I still need to talk to the doctor, but I'm pretty sure that means he can eat again. Now what I'm hoping for is that since there is no pneumatosis, maybe there is no gvhd and he will be able to get off his steroids. I can only hope and pray. We will have those results back by tomorrow afternoon. Jacob is back getting his endoscopy right now while I am in the waiting area. Being away from him when he goes through any procedure always makes me nervous. We will get another adenovirus count this evening. Praying that it is starting to clear up. Friday's results were worrisome.

Cuddling before his procedure

Day +85

Jacob had a good 36 hours with no fever. Unfortunately, he began spiking again last night.

He is still not allowed to eat or drink, which has been very hard on the both of us. It goes against all instinct to deny him food and drink when he is begging and begging all day long. I have to trust that the team knows what they are doing by putting him on gut rest.

This is all terribly discouraging. His recovery had been going so smoothly and then got hit with adeno, c diff, pneumatosis, and mostly likely gvhd all at once. His endoscopy is tomorrow, so we will get confirmation of the gvhd, but usually pneumatosis is a symptom of gvhd, so they already started him back at square one with the steroids. It's more than his fragile system can bear.

Yesterday I also found out that he has lost bone density due to the long term use of high dose steroids. He is on calcium supplementation, but it just isn't enough. This could lead to bone fractures.

I am feeling very defeated. The bad news just keeps rolling in.