Okay, enough already of the doom and gloom huh? Monday was the darkest day of my life thus far, but four days later, life feels a bit lighter. Allistaire is much more joyful and has lots of goofy sweet smiles and giggles. During rounds yesterday, Sten held Allistaire and I stood on the opposite side of the circle with all the various doctors standing in between. “From a Hematology perspective….from an oncology perspective…from a FEN (Fluids, Electrolytes, Nutrition) perspective…,” on and on they go and right in the middle of the resident going through their shpeel, Allistaire says, “Mommy, I love you.” I wish you could hear her voice and see her face and see the looks on the doctor’s faces. It was too funny and so sweet.
In addition to Allistaire’s improved disposition, Sten and I have confirmed our decision to enroll Allistaire in the clinical study that will use Plerixafor in combination with high-dose Cytarabine and Etoposide. We were so happy to hear that her spinal fluid is still clean! She will begin chemo on Monday. Please continue to pray for protection against infection, minimal side effects and utter annihilation of cancer cells!
This weekend should be pretty chill. Sten and I are looking forward to having some of his old friends/coworkers from Freestone (the company he worked for in Seattle) stop by for a visit. Then Sten and I plan to head out for a few hours together. Tomorrow we will be given a four-hour pass where we can take Allistaire outside and have some fun. Because she has a zero ANC still, we will avoid people and probably go to a park for Allistaire to play and maybe have a picnic lunch. It’s supposed to be sunny and nearly 60 degrees.
I’ve a few other joys in the last week or so that I haven’t had a chance to relay until now. Just over a week ago Solveig was out for a visit and she and I had the opportunity to spend most of the day together. We had an incredible time at the zoo and saw some amazing creatures including a father and daughter orangutans playing hide-n-seek with each other, an amazing bird show with an eagle, vulture, barn owl and several falcons, and a mighty grizzly bear duo looking to capture some fish. Mostly it was just a joy to run around with Solveig and hold her hand and watch her eyes as she talks.
Lastly, my mom and I had a lovely day together last Sunday. The best part is that in my laziness, I just threw on my old grungy green fleece, some jeans and my old green Asics shoes. Then I look at mom and see that she’s wearing a green jacket and green shoes. I could change but I don’t feel like thinking about clothes and I accept the reality that we are going to look like total dorks walking around together. For breakfast we went to a bagel shop. I saw the green bagels but it didn’t occur to me the reason for their odd color. As we paid for the bagels, the man behind the counter exclaimed that he loved all our green for St. Patrick’s Day. “It’s St.Patrick’s Day?” I asked. Who knew? We went from looking ridiculous together, to super festive. I have no idea what’s going on in the world or what the date is. Everything is counted in relation to when chemo started, or how long we’ve been inpatient (which has been 27 days now). I just found out yesterday that Easter is not far off. I had no clue.
I really want to thank you all for so many prayers, so many cards and stickers and pictures and sweet gifts and texts and phone calls! We feel unbelievably loved and supported! Please know that it is a joy to receive all you are giving and please, please, do not take my utter lack of response to be ingratitude or anything of the like. I am trying to keep track of everything and will eventually get to writing thank you cards. And know, that I will likely either not return your phone calls or return them very late, hearing your voice truly lighten’s my day. It doesn’t matter so much what you say, just hearing your voice and your attempts to fumble around for words conveys immense love and it helps buoy me up and carry us along these challenging days. Much love to you all!