Thursday, January 26, 2012

This is Happening

Thank you to everyone for your kind words, advice, support, prayers, and love. We need and appreciate all of those things. We simply could not press through this without you. We know that Heavenly Father loves us and is looking out for us by sending all of you into our lives. Everything is set to begin next week: travel, housing, preliminary consultation, conference. Here we go again.

Saturday, January 14, 2012


I have so much to do in so little time! We are heading to Seattle in two weeks. Jacob and I are going to be there for four months. The details of relocating are overwhelming me right now. I'm so thankful that my in-laws will help out caring for Ethan and my parents are going to drive our car all the way to Seattle. Both of those are BIG helps! There are still a lot of things I'm trying to work out. To start off, I've never flown with a child before and all the extra gear that will require: stroller, car seat, his own luggage, my own luggage, carry-ons, etc. How am I supposed to keep track of everything and carry it?? And let's throw on top of that, Jacob is a child that needs to be protected from airport and airplane germs, needs medications transported, some of which need to be refrigerated (how am I supposed to do that? Would TSA let me pack a cooler? Getting through security is going to be a nightmare.)... masks, anti bacterial wipes, Purell...Housing is also stressing me out. I wanted to get an apartment at the Ronald McDonald House, but it turns out, we'd have to be in communal housing (shared kitchen and laundry room) until Jacob is discharged. Then they would try to move us to the apartment style, self contained housing for BMT patients, if there is one open (they only have 10 of those). I'm not sure I want to do the communal housing thing, although the RMH is closest to the hospital. The other option would be to get into the Pete Gross apartments, which are closest to the out-patient clinic. Although they didn't look as nice as the RMH, we'd have our own apartment, with laundry, full kitchen, and a separate bedroom & sleeper couch, from the get go. Breathe, Kylene, breathe....

Ok, here is the tentative schedule of what REALLY matters most: Jacob starts his out-patient work ups on January 31st. The work ups will last for about two weeks. If he is found healthy enough, he will be admitted on February 16th to start five days of chemotherapy and then one rest day before his transplant on February 22nd. He will be in-patient for about 3-4 weeks after transplant while waiting for engraftment to take place. If he is stable after engraftment, then he will be discharged and followed closely through out-patient visits until 100 days post transplant. After that, we will be able to come home to continue his care. Once again, he will be pretty isolated for his own protection. It will take about a year for his immune system to recover. I can't believe that Ethan will be almost done with 1st grade and Jacob will be almost 5 years old by the time we can (hopefully) resume a normal family life. I just really can't wait until Jacob gets to come to church with us every week. He will love singing songs in Primary and making new friends in his class. I can't wait for him to be able to spend the day at Disneyland or to be able to go on vacation with us, or simply just to have friends over to play. That goes for Ethan, too. He hasn't been able to have friends over either since Jacob's first BMT. I'm so glad that the two of them are best friends. I can't imagine how lonely Jacob would be without his big brother! Maybe Jacob will get his line out this summer and actually be able to get his tummy wet in the bathtub or in a kiddie pool. In April, he will have had his central line for an entire year. I want Jacob to be able to play on the beach or go camping with his dad or simply just to play at the park or go to preschool. It's been way too long since he's really been able to have any rich experiences. Considering Jacob was diagnosed when he was only 15 months old, this has been a very long and strenuous trial for our family. But, the future is bright! We have been given this miracle through bone marrow transplantation and through amazingly generous people on the National Marrow Donor Registry. It still blows me away how selfless and good people truly are. This precious soul, who doesn't even know us, is willing to sacrifice his time and comfort to save our son. If you are interested in being on the registry, visit to see if you qualify. Registration is free for the month of January.

Tuesday, January 10, 2012

Perfectly Matched Donors

I talked to the transplant coordinator at the Seattle Cancer Care Alliance (SCCA) yesterday. She said Jacob's panel reactive antibodies test came back in and they now have all the information they need to find the very best donor and begin the transplant process. Jacob is fortunate to have many perfectly matched donors in the national registry. It is a blessing that we can find someone who is not only perfectly matched, but also meets other less important criteria, such as being CMV negative, like Jacob is, and matching his blood type. So far it looks like our best match is a 37 year-old North American male. He was originally Jacob's backup the last time and has already been typed. In the back of my mind, I already knew Jacob would have a lot of matches because he did the first time around, but receiving the call and hearing of these amazing people who want to save someone's life through bone marrow donation still touches my heart deeply.

Many of you have asked how you can help our family. One way is to sign up for the National Marrow Donor Program at Jacob is very fortunate to have matches, but many children have to settle for less than perfect matches, increasing their risk for further complications after transplant. The more people who sign up to be donors, the more chances there will be for children to have their perfect match. So please sign up! Be someone's hero!

The next step for us is to wait to hear on proposed dates. The clinicians decide based on the urgency of the case and the availability of the facilities. Once they choose, the date is proposed to the donor who would need to do a physical exam prior to donation, and then go through the actual bone marrow extraction on the day of Jacob's transplant. If the donor agrees upon the proposed dates, then everything is scheduled around Day 0, which is transplant day. If the donor is unavailable on the proposed date then dates will be discussed back and forth until something is agreed upon.

It is a huge relief to hear that things are moving along favorably, but also somewhat nerve-racking that this is all happening again.

Monday, January 02, 2012

Hopeful for 2012

Last week we took Jacob in for an HLA typing confirmation draw and also a cheek swab to see what his DNA looks like. Although Jacob's HLA typing was already done from his first transplant (this is what doctors use to determine who would be a good bone marrow donor match), they always have to confirm it again before initiating a new search, just to be 100% sure. The cheek swabs were something new. The nurse commented that she felt like she was on CSI as she performed the swabs. The reason for them is because even though Jacob rejected his first graft, he still may have some lingering donor cells in his body, slightly changing his DNA, which would be important for his transplant team to be aware of. For now, we wait to hear if a suitable donor (hopefully a PERFECTLY matched donor) is found.

As I think upon this new year, I have mixed feelings of hope and fear.

Hope that THIS is going to be the year that Jacob is cured and that by the end of the year he will be recovering from his BMT. Hope that we will someday resume a "normal" family life. Hope that we will be able to give Jacob a full life, filled with rich experiences.

Fear of moving away from my home, husband, Ethan, and extended family members. Fear that the procedure won't work. And fear, that it may cause so much damage to Jacob, that in the end, we will lose this battle.

Last year at the same time, I had similar feelings and thought for sure by 2012 things would be resolved. Here we are again, starting from scratch. As a wise friend of mine taught in church yesterday, "it is better to look up." I'm going to take that to heart and focus on the hopeful aspects that could come of this year. In the grand scale of things, this will be but a small moment in time.