WE'RE BACK...IN PORTLAND

We certainly did not go up to Seattle with the intention of coming back to Portland so soon. We spent the last month transferring my care to the Seattle team, multitudes of appointments were made, numerous phone calls to potential landlords for potential housing availability, flew grandparents up to Portland to care for Naomi while Roy and I were gone, packed 2 suitcases, multiple boxes of medicines and medical care products and Roy's road bike for the long haul. In hindsight, Seattle was not a mistake, what it did do was help me to see clearer that being in Portland, being back home, was the right decision in the end. 

We arrived in Seattle Monday, May 15. Through a friend of a friend, we had a 1 bedroom apartment waiting for us in the Ballard neighborhood. We had a nice dinner, didn't bother to unpack, and turned in for the day. We didn't realize how tired we were until there was nothing more we could do, and we're forced to do nothing, figure out nothing, plan nothing, and we were so thankful for that pause before the rest of the week started. 

Each day I had an average of 4-5 appointments a day. By the end of the day, I was exhausted. Fred Hutch Cancer Center's transplant program is like a well-oiled machine, they've got 1-inch thick informational packets customized for your treatment plan, and each person has a specific task as part of your transplant team. There's the doctor, but also the Physician's assistant, the transplant nurse, the nursing assistant, the scheduler, the social worker, therapist, nutritionalists, and probably a few others I forget, all there to support you. We had interviews and meetings with each of these people along with tests of every kind during this week. 

However, it wasn't until Thursday of that week when we met with the transplant doctor for the first time. During this meeting, we talked specifically about the treatment plan, what it entails and what I should expect. And it did not look like what I thought or was initially told it would be. We chose to come to Seattle, despite it being much more complicated, because it could be done outpatient, so each night I can come home, eat dinner, hang out with my family and sleep in my own bed. Hospitalization would only be required if I something happened, which would be expected but hopefully for just a few days here and there until I stabilized. Instead, they now planned to keep me hospitalized for 3-4 weeks straight. Part of the reason is the change in chemo they needed to use for bone marrow transplant, but the bigger reason being that the transplant is considered a very high-risk transplant, with a 40% mortality rate. This was my first time hearing this and honestly, it scared me. Doubts about the transplant began to creep in.

Over the weekend, after much time in prayer, asking God for his comfort, reassurance and wisdom when I didn't know what to do, it suddenly became clear that it no longer made sense to stay in Seattle. Portland's transplant program requires 30 days in the hospital, which is about the same amount of days as Seattle's program. And while Naomi is not allowed to visit me during that time, I can still have family and friends come by at OHSU. Plus, given how difficult of a recovery this will most likely be, I will need all my strength to get through those days. Being at the hospital will allow me to simply focus on getting better and healing, so that I can come home. 

The new date for transplant at OHSU is now slated for June 29, with preconditioning (chemo and hospitalization) starting June 23rd. For the most part, OHSU has picked up where Fred Hutch left off, so I've just got a few more tests and procedures to do before the transplant. Being back in Portland has been good as the stress level has gone down for all of us, even Naomi who struggled while we were gone. Its scary enough to have your mom sick, let alone be left behind without the people who love you most. For all these reasons, it's good to be home. 

Prayer Items:

Immunoglobulin levels are almost nil due to the last blinatumomab treatment, hence I am unable to fight off any infections including a sinus infection/ bronchitis for 1 month now. I need infusions of the Immunoglobulins to help boost my levels but still waiting on the Providence Home Infusions 10 days after the order was placed. If I am unable to fight off this infection in time, transplant will be delayed. 

Naomi's emotional health through all this as it became very apparent while we were up in Seattle. 

Praises for a well done Olympic Triathlon by my hubby (rockstar!), a weekend to spend together just the 4 of us (Scout included) in a beautiful setting by Lake Wilderness, for God's stunning creation and the peace and quiet we had. These days, I am grateful for every moment we get to slow down and simply breathe.