Week 1 - Workup
We made it to Seattle!
This is going to be a very short blog post, and for that I apologize.
I also apologize for the lack of photos and for the huge lag time between my last post and the present. Let me confess that I have perfectionist tendencies (always have), and my true desire is to make each blog post as detailed and interesting, full of videos and images, as our last one.
But, I am also a one-woman show. I had over a week in Colorado to work on that last post as we regrouped before continuing on to Seattle, and time has run short since then as I’ve worn the many hats of required by someone who loves her child. I suppose we will both have to extend some patience and grace towards me. I’ve recently come to peace with the idea that some of my blog posts will be “super awesome” and others will simply be words and bare-bones updates. This will make things timelier (ie, better) for you, and will also help me to calm my perfectionism. Win-win.
Remember: progress not perfect. (“Perfectionists unite! … but not all of us.” It’s okay if we’re imperfectly united in our cause to allow progress.) lol.
Mailing Address
At any rate, I wanted to be sure to let you all know that we have made it to Seattle. We arrived Monday, April 24th around 3:30 pm. We moved into one place, and then the Ronald McDonald House had an opening, and it was clear that the “Ron Don” was a better fit for us physically and emotionally, so we are there, now. And so - we finally have an address!
I’m not sure it is wise to broadcast our address on the web, so if you are interested in sending postcards, letters, or care packages to Adahlia, please contact me via this form, on a social network, or via my private info if you have it and I will send our mailing address to you. We will keep this address for the next 75-90 days.
“Work-up Week” Has Begun
Workup week began the very next day, on Tuesday 4/25, and kicked off with 10-hours of provider consultations and a blood transfusion for Adahlia. It was a doozy of a day.
“Work-up Week” is something of a misnomer, because it actually lasts about 3 weeks (4 weeks if you count the chemotherapy conditioning prior to transplant). I will add more about it when I have some more time. Suffice to say we have had MANY appointments, including her baseline consultation with Nutrition and Occupational Therapy. Transplant is complex and is hard on the body. One of the things we must do is take baseline measurements of things like grip strength so we can measure again post-transplant, and be sure she is regaining her original strength.
My biggest desire to communicate to you right is how incredibly relieved and grateful I am for us to be here. These doctors and nurses and other providers are undeniably the BEST at what they do. They are clearly intelligent, thorough, diligent, and hard-working. They offer to “check the literature” when they are unsure of anything, and we have had very detailed and challenging conversations, their responses highly pleasing to my nerdy, medically-attuned, and obsessive self. Moreover, they are kind, compassionate, and have great senses of humor. Honestly, each of her health team members are just models of the creme-de-la-creme of humanity. I have never felt more comfortable and confident that my daughter’s life is in great hands. Coming here was the right choice.
Okay, I must go now, because we have a day off and are planning to go watch people throw fish at Pike Place Market.
More posts coming more frequently…
Rest assured that in coming days I will write a more detailed account on the second leg of our journey to Seattle, the friends we’ve made along the way, and some of the “work up” tests and exams to date. So stay tuned! If we met you, dined at your restaurant, or you helped us in some way, you might just be featured. :)
Support / Gifts
Before I do go, I wanted to respond to some some requests on how friends can send monetary gifts and support. I recently added that information to our website on our support page.
Of course, you can also purchase t-shirts from the shop (we keep $2 of every shirt sold). I have more designs coming out in the next couple of weeks - and they’re pretty snazzy if I do say so myself! We’ll be having a photo contest where you can show off your support bracelet and support shirt and maybe we will offer some prizes. :)
Thanks so much for following along with us!
The past week has been very difficult - lots of tears and reckonings - but also moments of vibrant courage and fierce determination. We sincerely appreciate having your spirit alongside ours. Thank you and best wishes for a wonderful weekend!
