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.

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.

Zoo

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.

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.

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.

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.

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.

Possible New Dates

Jacob's cultures from Monday came back negative for any viruses. The team has recontacted the donor and is requesting him no later than March 9th for transplant. If he agrees to March 9th, Jacob would be admitted and begin chemotherapy on March 3rd.

Week 3 Update and Seattle Photos

We have good news to report this week. Jacob is no longer fighting three viruses at once. As of the cultures taken on Monday, Jacob only has one active viral infection now: metapneumovirus. Seattle Cancer Care Alliance plans to test him again on Monday, and it takes a day or two to get the results back, so we should hopefully know by Wednesday whether he still has an active infection. If he doesn't, they'll contact the donor about scheduling a new transplant date. So for now, he is pretty much done with all of his transplant work ups and we are just waiting for him to fight off the last virus. We had nine appointments this week and next week we're only schedule for four, so things are slowing down. The team decided they wanted to repeat the chest CT scan once Jacob has cleared all viruses to see if there is any improvement from the last one.

We know these pictures are overdue—thanks for your patience.

Jacob Skyping with Ethan from the Residence Inn (the first place we stayed)

The view of Union Lake from our Residence Inn balcony to the left...

...and the view of the SCCA building to the right. You can see the corner of it peeking out in this picture. That is where most of Jacob's outpatient visits are. We also have some visits at the Seattle Children's Hospital, which I don't have pictures of yet.

This is where we are living now at the Pete Gross House.

Cute new shark costume from Josh's Sophos co-workers

On Sunday we took a nice outing to the Seattle Temple grounds:

Happy Valentine's Day! Thanks to everyone who sent us Valentines! We were so excited to get mail!

Week 2

Our move went as smoothly as can be expected last Saturday. Just imagine me pushing Jacob in his stroller with one hand and dragging a luggage card filled to the brim with the other. We were quite the sight and occasionally a kind soul would help us out. :) Needless to say, Saturday night I was exhausted! It's nice getting settled in our apartment and actually unpacking and putting away the things that we brought. We got our kitchen stocked with food using Amazon Fresh, a grocery delivery system offered by Amazon only in Seattle. It's starting to feel more like home now.

This week was even busier than last. We had 13 appointments and procedures, including a CT scan and an echocardiogram. The schedulers kept scheduling Jacob for a sedated CT scan and I had to tell them three or four times on different occasions that he didn't need sedation for the CT. Even the technician seemed doubtful as he walked us back for our appointment. Jacob was so cooperative and cheerful the entire time. He even kept his eyes open this time. Afterwards, the technician said how impressed he was that a three-year-old could hold so still for the scan and that he's never seen such a cooperative young child. He then proceeded to praise me on what a good parent I must be for preparing him for the procedure, and how other parents should do the same. I do really wish I could take the credit for Jacob's calm and happy nature, but he really was just born that way. :) The CT showed some abnormalities in his lungs, so we will wait to hear what the final report and decision is on that. This isn't the first time that's happened. His EKG and echo showed that he still has the small hole in the top of his heart, but that it doesn't seem to be causing any problems. Jacob also had a physical therapy evaluation which showed that he's not as strong as other kids his age, but it's probably because of his small size and from having to be inside so much. He is, however, very coordinated. :)

The cold that Jacob picked up last week ended up actually being THREE different viruses! Two of which were pretty serious ones. He was fevered over the weekend, but was doing better by Monday. He still has a cough and runny nose, but his body seems to be fighting them off. Just to be sure, he received a 5 hour infusion of ivig today to give his immune system a boost. He did amazingly well. We played, ate, and cuddled watching cartoons. It gave me a little reminder of what it's like being stuck in a hospital room though and I do have to say it was depressing and boring, even knowing that we were free to leave at the end of the infusion.

The team decided to postpone transplant by three weeks to make sure he is completely over these viruses before completely wiping out his immune system during conditioning. It was hard to hear that we are already going to be here three weeks longer than planned when we are just barely starting out, but that's the thing with bmt's. You have to be flexible and expect delays. As we learned last time, the plan rarely goes as outlined. I'm glad the team is being cautious and allowing Jacob to be in as good of health as possible.

Thanks for the emails checking up on me. We really are doing ok. I can handle the out-patient lifestyle. I enjoy returning to our apartment to relax after a long day of appointments. It's the in-patient time that's going to get exhausting and emotionally draining. I've been spending my quiet time reading or doing puzzles.

I am starting to learn my way around a little better. The freeways are congested and have on-ramps and off-ramps on both the left and right sides, which gets stressful, but I am SO, SO grateful for my GPS. I have a hard time imagining life without one. I'm actually not even really sure what we did before the GPS age. :) Another thing that is different here is that you have to pay for parking every where! It costs us $100/month just to have a parking spot at our apartment complex. It was $24/day to have a parking spot at the Residence Inn. It's $4/day to park at the clinic with validated parking ($12 without!), and we had to pay a buck to park at the pharmacy. The only place where parking is free, amazingly enough, is at Seattle Children's Hospital. We made it to the pharmacy twice this week, so now, after working out some kinks with the copay, I know how to get Jacob's medications. That is certainly a comfort.

Our beautiful sunny first week was quickly wiped out by the gray, rainy skies that are typical of Seattle. We've been unable to walk to clinic since the rain set in, but I'm so glad to have my car up here and we even took the shuttle one of the days. Once we got seated on the shuttle, Jacob looked around and asked, "is this an airplane?" Very cute. :)

I miss Josh and Ethan, but we've been diligent about Skyping with them everyday. I know Jacob misses them, too. Ethan is his best buddy and they will enjoy seeing each other again in March! From what I've seen and heard of Ethan, he seems to be adjusting to having us gone. I know he misses us, too, but I think he continues to do well at school, and with Josh and his grandparents. I'm not sure how I would've reacted to my family being split in half for an extended period of time when I was 6 years old, but he continues to amaze me with his depth of understanding of the situation. He even mailed us a homemade Valentine's Day card this week which we were so excited to get! :)

Again, thank you for the continued prayers. They continue to lift our spirits and allow us to feel of your love for Jacob and our family.

Week 1

This week has flown by. We arrived in Seattle on Monday and the trade off with our car went super smoothly. We have been staying at the Residence Inn which is conveniently on the same block as the SCCA clinic, where we have the majority of our appointments. Also, it hasn't rained during the day since we got here, allowing us to walk to the clinic each day. Today the skies were perfectly clear, not really how I had imagined Seattle in the winter, but I'll take it! Our stay here has been good so far. Our suite is a one bedroom with a full kitchen (minus the oven). There is a free full breakfast provided every morning and a free dinner Monday-Wednesday. This saved us a lot of stress and time trying to make meals on top of our busy schedule. I won't get into details because it would get tedious, but Tuesday-Friday we had 11 different appointments and procedures, some at the clinic and some at the hospital. One of those appointments included a sedated bone marrow aspiration, which required NPO. Jacob did great. He only asked for Boost once before they were finally ready for him around noon. It took him a while to wake up afterwards. He was trying to take a full nap, but the nurses kept bothering him every few minutes until he awoke. Next week will be just as busy.

Despite our best efforts to sanitize his hands and keep him away from other people during our flight here, Jacob managed to pick up a cold. He's been coughing since Wednesday. If symptoms have not cleared by the time it is time for chemo, he will be delayed.

Josh flew home Wednesday night, so Jacob and I are on our own for now. We are managing ok, except tomorrow's going to be difficult trying to move out of our hotel and into our apartment by myself. I still haven't quite worked all of that out in my mind, but it'll come together some how. I'm looking forward to getting more settled in to our home for the next four months. It'll be nice to unpack everything. If you'd like our address, please email me directly.

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.

Logisitcs

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 bethematch.org to see if you qualify. Registration is free for the month of January.

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 bethematch.org. 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.