Friday, March 30, 2012

Day -7

Day -7 means that we are 7 days away from transplant. The days will count down to 0, which is the actual transplant day, and from then on, his days will be counted as +1, +2, and so on. This is the lingo used in the world of BMTs.

We are still scheduled to be admitted tomorrow at 8:00am. We will begin treosulfan and fludarabine as soon as is it prepared. These two drugs typically infuse without any problems. In fact, with older patients, they are infused on an out patient basis. They like to admit the little ones because they can't communicate problems as easily, so it's better to have the medical staff monitoring them closely. Sunday, will be the same two drugs. After that, things become more risky when he receives rabbit ATG for three days straight. Almost every patient has some type of severe reaction to it. ATG is necessary to prevent graft versus host disease (GVHD), where the new cells attack Jacob's tissues, seeing it as something foreign. It is important to suppress the immune system dramatically in order for the new cells to get settled and comfortable in their new home without attacking their new host.

This week has been difficult emotionally. Of course no one would want to put their child through this, especially twice, but we don't have a choice. I have to trust that our Heavenly Father is in control and trust in his plan for Jacob's life. I hope that Jacob will be able to be a living testament of our Father's love, mercy, and power.

A big thank you to everyone who is praying for Jacob and our family and submitting his name to temple prayer rolls. He continues to be infection free, his blood counts look great, and as far as I know, our donor is 100% on board to donate on April 6th. We give thanks for this wonderful woman and pray that her procedure will go smoothly.

Saturday, March 24, 2012

The New Plan

Jacob's new admittance and chemotherapy start date is March 31st. This puts his actual bone marrow transplant on April 6th. For you church history buffs, this is a significant day of new beginnings and will be symbolic for Jacob's second birthday. I really hope the dates stick this time and we don't end up with another delay.

This past week has been so much fun! Jacob was super delighted to play with his brother. I wish I had taken a picture of the loving looks on Jacob's and Ethan's faces when we first picked Ethan up from the airport. It had been nine weeks since they had seen each other, and both of them were just glowing with huge smiles and loving eyes. They just couldn't stop looking at each other during the drive home and didn't waste any time getting down to business playing when we got them to the apartment. With Josh's parents here to help us out with the boys, we enjoyed a couple of really fun dates to the Space Needle and Pike Place Market. We also took Ethan to the Pacific Science Center. It seems like it was meant to be that Jacob was delayed last week so that he could truly enjoy the family time without being stuck in the hospital feeling lousy.

Thanks for the continued prayers. Please pray that he will continue to be infection free and that our donor won't back out so we can stay on track to start next Saturday. Also pray that his body will tolerate the chemotherapy without any damaging side effects, that his new marrow will graft 100%, and that he will be cured of CGD.

Saturday, March 17, 2012

Delayed Again

I'm really ok with this. I thought it was going to be "third time's a charm," but apparently, we needed one more little delay. We were admitted and got settled into Jacob's room this morning, as scheduled. He was exhausted from a late night with Ethan and was red-eyed and grumpy. His nose was runny (we hope only from the crying), but it made everyone nervous enough to wait it out for one more culture result. A few hours and two nasal cultures later we were discharged. We are now back at the apartment, enjoying our family in a much more comfortable setting.

Tuesday, March 13, 2012

On Again, Off Again... On Again

I've learned not to get excited when we hear hopeful news because things change so quickly around here. Our 22 year old female donor who had some issue with her physical last week, has now been cleared to donate. Jacob is scheduled to be admitted and begin his conditioning on Saturday, March 17th. This puts his actual transplant date on Friday, March 23rd. We are hoping it is only about a month long hospital stay, as opposed to the 3 1/2 months we had to spend in patient at CHLA last year. I hate living in a hospital.

I have very mixed emotions about the news. I was perfectly comfortable hanging out with Jacob in our little apartment. Now I have to worry about him night and day for the next year wondering if he will pull through and if the transplant will engraft. On the other hand, I'm glad that there is some hope to cure CGD and that he is well enough to be a candidate for it.

Saturday, March 10, 2012


Yesterday, Jacob and I went to the Woodland Park Zoo. The nurses had mentioned on Thursday's clinic visit that I could take Jacob out, as long as we avoided crowds. Looking at our options of things to do around Seattle, I decided if the zoo wasn't busy, then that would be the best choice since we could steer away from crowds and keep Jacob in his stroller, which protects his hands from touching germy surfaces. Jacob says his favorite animals were the tiger and the wolf (of course, the two I didn't get pictures of). We enjoyed our outing and walked through the whole zoo in one and a half hours. It was very, very cold. We had our jackets, but an extra blanket for Jacob, mittens, or beanies would've been nice. We will have to remember those things if we go back.

The donor office contacted our team yesterday saying that they would know one way or the other on our donor by Monday. If she is cleared, we will be admitted March 17th with a March 23rd transplant. If she is not cleared, then they will immediately begin another new search.

Ethan's spring break is rapidly approaching, and I am so excited to see my other little man! I don't know if he misses me, but I have missed him so much. It's been really hard being away from my child for this extended period of time. A mother should not have to go through this kind of separation. As this continues to drag on, I am considering moving Ethan up here with me. There is a year round school here just for cancer patients and their siblings that I think he would really enjoy. I'll try to get a feel for how things would be with both boys when he is here for his spring break. It might be too much for one person to handle when Jacob is in the hospital.

Thursday, March 08, 2012

Broken Record

I don't want to write this post, but I feel a certain obligation to share the discouraging news for those of you who have been praying for Jacob and our family. I'm starting to wonder if I'm a broken record, but we are once again on hold. Jacob's donor didn't pass her physical exam. They can't tell us what the issue is or if/when it'll be resolved. The donor still wants to donate to Jacob, so they will let us know when they've reached a decision on her eligibility.

On a brighter note, I was given permission to take Jacob to some of the sites around Seattle, as long as it's not during a busy time. SCCA even provides passes for their patients to get into certain attractions.

Monday, March 05, 2012

Giving Thanks

I wanted to start off by thanking everyone for their continued prayers and fasts for Jacob. I am humbled to have a glimpse at how many people love and care for him and remember him daily in prayer. We are so grateful for each and everyone of you!

We had some good news today: Jacob's donor is on board for transplant on March 16th! If the donor passes his physical exam, then Jacob will be admitted and start chemo on Saturday. I'm feeling so grateful to this anonymous person for putting his life on hold to sacrifice something of himself to give Jacob a better chance at life. I can think of nothing more selfless and generous.

Saturday, March 03, 2012

the waiting game

We have been here a little more than a month and have been delayed twice. First, because Jacob was sick, and now because we had to find a new donor. Hopefully things will smooth out from here. We have finished up with all of Jacob's workups and he checks out to be in perfectly good health (except for CGD, of course). His lungs even looked better in the followup ct scan last Monday. The doctor said his immune system is fully recovered from last year's bone marrow transplant and she was impressed with how quickly and efficiently he cleared the viruses. It's hard starting all over again, but we have no other choice. We have to try. We pray that this time around he will be cured with no further complications and that next year he will begin to resume a normal life. As for next week, we only have one day of appointments and then hopefully he will be admitted on Saturday.

Thursday, March 01, 2012

Possible New Dates (Again)

We found out on Wednesday morning that Jacob's donor backed out, so now the team is trying to find another match who's willing and able to donate, preferably on Friday, March 16th. If they can find someone quickly, Jacob will hopefully be admitted on Saturday, March 10th to start chemo.

Last year before the first transplant, there were several good matches that came up in preliminary results, so we're hoping that there will be another person who's a 10/10 HLA match in good health who's willing to donate marrow on short notice.

We're very fortunate that Jacob has good HLA matches; many patients aren't so lucky. As a reminder, we strongly encourage you to join the marrow donor registry; you could save the life of someone special.

For now, everything has basically been moved back a week, but Jacob's admission and transplant dates could get pushed back further depending on donor availability. This is very frustrating for all of us, but we're doing our best to try to stay positive.