Snuggles with Daddy while Mommy mixes the oral chemo.

Mommy mixing the chemo with mask and gloves due to the high toxicity.

Hi all – Nicole brought Sally back into Memorial Sloan-Kettering early this morning to begin the next cycle of treatment, which will last the next 60 days. After receiving some physical therapy, she underwent a spinal tap where she received her first dose of chemo into her spine. While under, they also took a bone marrow sample. This surprised us as Nicole was told last week that they wouldn’t be taking a sample as they already had taken one two weeks ago.

Luckily her blood counts all looked good and she didn’t need a transfusion. Nicole and I were worried that Sally’s counts were low yesterday as she looked pale and had darkness under her eyes. Staff say this is likely a result of the high doses of chemo the last two weeks. Her g-tube site also looked ok, the team told Nicole to buy these cotton pads that go around it and soak up any leakage. I purchased them earlier, able to use Sally’s Paypal account. It was the first time I personally used money that has been contributed to her to buy something directly for her care. Thank you to everybody who has given!

Sally was very tired and clingy this evening. We had to give her a dose of oral chemo at home for the first time, which we’ll have to do over the first four days of this cycle. This is one of the big reasons we elected to have the g-tube installed as this chemo has to be ingested, and knew it would be impossible to give to Sally via mouth. The Nurse Practitioner explained to Nicole how to crush it up into a powder, add water, and then deliver via syringe. Although she also told Nicole that she needed to wear a mask and glove while doing this as it’s so toxic that you don’t want to inhale it or get it on your skin. Nicole was like “Are you kidding me? And I have to put this into my daughter?” in a half joking tone. It’s either laugh or cry, and Nicole I do our best to take the former route when we can, although it’s often accompanied by the latter internally for us.

Sally goes back on Thursday to receive more chemo via IV. I’m still trying to wrap my head around the next 60 days, so if you want more details on what it will look like you should check out a past post by Nicole where she explains it by clicking here. It’s a heck of a lot clearer than the doctor provided road map that I get cross eyed looking at:

So the next few days are delivering her meds, making sure we’re getting enough fluid/food into her, working on her physical development and keeping an eye on her health. Please keep Sally in your thoughts and prayers.

Matt