Thursday, February 23, 2012

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.

Friday, February 17, 2012

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!

Friday, February 10, 2012

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.

Friday, February 03, 2012

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.