Sally getting a ride while receiving chemo at MSK.
Picture of Sally just days after she was diagnosed and began chemo.
Sleeping beauty.
Hi all – Sally and Nicole returned to Memorial Sloan-Kettering today for her continued treatment. She received a high level of fluids in the morning via IV, and then the chemo in the afternoon. Nicole says she was very tired and slept a lot during the day, although she did manage to get some PT in where they worked on her in a crawling position.
As of now, Sally is not scheduled to return to MSK until next Thursday, as doctors plan to combine two appointments into one. However, her Hemoglobin has dropped from 8.8 to 8.0 (normal is around 10) and is expected to continue to drop. Typically they do a blood transfusion when it gets to 7.0. Doctors think Sally should be able to hold out at least the weekend until she needs a transfusion, maybe even a week. However, the risk is there for it to drop suddenly as it has for her in the past, so for the next few days Nicole and I will need to monitor her very closely for signs of paleness and limpness. If we see this, we’ll need to take her in, even if it’s in the middle of the night.
Nicole is currently having a girls night out with some friends at a new beer garden that opened in our neighborhood. She needed a break, she’s been on Nurse Mommy duty for quite some time and needed an escape for a bit. I just gave Sally her oral chemo and put her down, I have to head in and hook her up to her feeding machine as soon as I post this.
As I mentioned, Sally has still not begun crawling yet. Today I realized that if none of this had happened, our little girl would have long blonde hair and be crawling around, if not already walking. Between losing the relevance of time the last few months and Sally having minimal hair, I think my mind had deceived me into thinking she’s younger than she really is and as a result, not too behind developmentally, which isn’t the case. Earlier I saw a picture of Sally that was taken just days after she was diagnosed, and at the same time had a photo of Sally from last night’s post on my screen. The realization about her delayed development and the visual of how much she’s physically changed in just two months brought on a feeling like somebody was standing on my chest. Our little girl has already been through so much. We’re only 2.5 months into 24 months of this treatment and the thought of her development being stunted over this time is a scary one for us. It’s something we’ll obviously have to work hard on to keep her advancing forward.
One day at a time. Please keep Sally in your thoughts and prayers.
Matt
Reading your blog tonite I realized something Matt…how extraordinary you are. When children are ill Mommy’s step up to the plate and do what they have to do…its a given. BUT you have been sooo extraordinary. My husband loves my daughter beyond words, but would not.COULD not do all that you do. “hook her up to her feeding machine” “gave her the chemo” My hubby would leave that for me ALWAYS!! This is a horrible time for your family BUT you all are soooo lucky to have each other!!!!!
I’m hope that you guys get a nice week long break from msk. We haven’t been since Monday but this has been a tough week for me. I feel like the adrenaline of the past 6 months has left my body and even the smallest task has been too much. It is weird how these random things catch us off guard sometimes. It does feel like time is frozen from when the journey began. Sally will be amazing because she has two of the most wonderful parents. She is a special girl:-)
HUGS.
I also think you are a Very Special Father…Sally is a very Special Girl and is always in my prayers.. Praying for a quite restful weekend for you guys…Love to William
Sally is very lucky to have both of you as parents, and you and Nicole are lucky to have each other. I hope you know that there is an army of people behind you with their love and prayers.
When one day at a time is too much to handle, take it an hour at a time.
There are so many people who stress the small stuff….everyone should know how strong and brave you and Nicole have been. Our children are our treasures, our life. You daughter can feel the love and strength you are blessed with. You are all an example of what family truly means. May God continue to walk with you on this journey…..looking forward, one day, to the posts and pictures of Sally at dance class, Girl Scouts or anything else her heart desires.
Continued prayers,
Marie