Hi all – so we’re home, and if you can believe it, we have way more anxiety here with Sally than we do in the hospital. There is a lot of pressure on us to get enough fluids into Sally to keep her hydrated, otherwise we’ll have to bring her back into MSK. She finally started taking a bottle again on Thursday, but only drinks little bits here and there. She still has a lot of mouth pain, which the morphine does help some but can tell she’s uncomfortable. She’s also very tired and doesn’t have a lot of energy, so far getting her to drink has been a challenge.  We’re going to try and use a different bottle and make a larger hole in the nipple so she doesn’t have to work as hard to get the milk.

The effects of chemo are starting to take hold. We see glimpses of our Sally, but most times she’s very groggy and prefers to be held and lay her head on us as opposed to sitting up. Smiles are also a rarity now, we get very excited when we see one. The steroids are causing her to fill out more, so her already large cheeks have grown quite larger. To me they’re just more fun to kiss. Her eyes have a purple coloring around them. As you can see in the photo, her hair is starting to fall out in chunks, that image was taken after the 3rd sheet of the roller this morning. Its getting everywhere, and starting to irritate Sally’s face (and land in my coffee) so we’re going to go ahead and cut off as much as we can this weekend. As mentioned before, this is an emotional part of the long road we’re on as it makes this whole thing a reality, but are also trying to move past it. As I was discussing hair loss with another set of parents, you don’t even notice the hair much after awhile. When I’m on the 9th floor, I actually barely notice the kids not having hair, if anything you focus on the true beauty and strength of the children. To us, Sally is still the most beautiful little girl in the world and always will be, its easy for us to see past the effects of the chemo. Our focus is on keeping her as healthy and comfortable as possible.

Sally’s next appointment is on Monday, which will hopefully be just a quick check of her blood work and maybe a transfusion. On Thursday they will give her some treatment as well as another bone marrow biopsy and spinal tap. The week in between is to give some time for Sally to recover a bit. Assuming all is well, they want to start the next cycle of treatment the following Monday. Yes, they build you up to knock you back down again. That means the week of the 12th will be an intense weak of chemo, which afterwards will likely result in Sally checking back into MSK until her numbers recover like the past week. We now realize why they call them Cycles, but also allows us to plan and be a bit more mentally prepared.

There is a trifecta of us parents at MSK that have connections to each other outside through friends and our neighborhood. Sadly, all three of our kids were on the floor at the same time this week. Thankfully, Cami got to go home yesterday as well for the first time in over a month in total isolation after receiving a bone marrow transplant. Should Sally need one, it was good for us to see the experience and how well she handled it. Our friend Scarlett is still there, we hope she gets out this weekend. She suffers from Ewing’s Sarcoma, a very rare form of cancer. Her parents run a blog that has been my ‘training manual’  seeing the early weeks of her treatment and how they coped. They are also the ones who helped us set up this blog. Although the other two sets of parents have ‘only’ been at this for a couple months they come off as veterans, their experience and advice has been a major help to us as we begin to navigate the waters. To learn about Sally’s buddy Scarlett (they hang out together in out-patient treatment) and her fight, feel free to visit their blog (password Ryan) – www.talesfromthesea.com

For those who have been sending treats to the nurses and gifts for the family, thank you so much. If we haven’t reached out and thanked you, its either due to a lack of time, or we don’t know who you are! Please please please reach out to us and let us know if you sent something so we can thank you personally. Some things don’t have any names on, and others have only first names.

Thank you all for your support, please keep Sally in your thoughts and prayers. Pray for her to drink and eat so we can keep her home.

Matt