First off, if we don’t send an update, it means everything is fine and we’re just enjoying our time together as a family. Us not sending a lot of updates is a good thing, it means everything is progressing as expected.
As the title says, we had a good weekend with Sally home. On Saturday my sister was here to keep the boys busy and help me give Sally her medications while Nicole was at work. Luckily the nurses sent us home with a laminated schedule to reference that we keep on our fridge. After Nicole got home we all enjoyed dinner together and a peaceful evening, ending with us giving Sally our first shot at home. She doesn’t like it during obviously, but recovers quickly showing her toughness.
Today, a friend from my local triathlon club who happens to be a professional photographer came over (directly from a race of course) and took some family photos for us. We realized that we didn’t have many (if any) good photos of the five of us together. We also wanted to get a family photo before Sally begins to lose her hair and the other effects of chemo kick in, so knew we had a short window to get this done. Essentially, we wanted a snapshot during this happy time together that we can hold onto should rough times be ahead during this journey to remission. We can’t thank Tony enough.
With my sister being here and Nicole and I actually dressed nicely, we decided to go on a short date. We didn’t go far (a restaurant at the end of the block) but was nice to be able to get out and talk to each other over a cold beer (so classy) and make sure we’re on the same page about things. We also got to catch up on what we each missed during the week. One thing that bothers us is when people say things like “At least Leukemia is curable” or “At least she has the ALL one” or “I just know she’ll be fine”. Leukemia is cancer, its dangerous, especially in infants, and especially with Sally’s MLL translocation. The treatment to get to full remission is very painful for kids of all ages and takes a toll on their families. Diminishing it in any way may make the person saying it feel better, but doesn’t make us feel better. Yes, we hope Sally will be fine and are doing everything we can to make sure of it, but nobody knows what’s in store for Sally over this long and grueling process. We can just take it one day at a time.
Tomorrow, Nicole and our friend Tina are bringing Sally into MSK for the first of her three planned appointments this week. She will have a spinal tap and bone marrow biopsy to track how the first week of chemo went, as well as receive her chemo treatment. One thing Nicole and I have learned is that we can’t expect visits to MSK to be routine as most have not been so far, so from now on an overnight bag with necessities will accompany whichever of us is bringing her. We both have anxiety before going there, including tonight, and discussed that on our date. Speaking for myself, I have barely slept since Monday as I have so many pent up emotions and fears inside that I haven’t been able to get out or deal with yet. It seems like every time I want to cry or let it out, I can’t because Sally or one of the other kids is with me, and I refuse to let them see us upset or concerned, a deal Nicole and I made when all of this started. I know Sally is a baby, but something as simple as waiting for her hair to fall out scares the hell out of me, its what’s going to make this real…that my little cute blonde Sunshine is fighting off cancer. Right now I can look at Sally and as long as her central line tubes are hidden, you wouldn’t know she’s sick. That facade will be gone soon, and know I’ve got to be as ready for it as I can. As Nicole says, our job is to be strong and fight the fight for Sally and be strong for all the kids and each other, so that’s what I’m focusing on.
Thank god for Thomas, who has been reading up a storm and watched an Elmo DVD dealing with pediatric cancer this morning. He’s even been able to tell us things we didn’t know. He’s taking his role of big brother very serious. We let him watch us give Sally a shot tonight, and was very concerned for her. Can’t express how proud of him we are.
We’ll let everybody know how tomorrow goes, please keep Sally in your thoughts and pray her counts and marrow are all in a good place. Thank you all for your support.