Blowing kisses.

Sunshine

The boys with Auntie AnnMarie. William fell into a flower pot at school last week, hence the big bruise.

“To be, or not to be…”

Hi all – On Thursday we started Sally’s sixth cycle of treatment with intrathecal  methotrexate in her spine and a bone marrow biopsy. That night we also started four days of her oral chemo. Two cycles ago we gave her three pills of chemo (broken up and pushed through her feeding tube) each night and it knocked her down so far it landed her in the hospital all of Thanksgiving week. Last cycle doctors cut this down to one pill nightly, which dropped her counts to a “manageable” level.

This cycle they upped it to two pills, which made us a bit nervous, even with one pill the last cycle she was miserable for the week. We took Sally in for chemo today only to find out that her counts had already plummeted. Usually it takes 7-10 days for counts to bottom out so for them to already be low after four days makes us think she’s going to bottom out. In addition, she started throwing up Saturday night and has been unable to hold down any fluids since.

The team decided to delay today’s chemo for a couple days to give Sally a bit of a break before hitting her with more. They sent Sally home hooked up to Mr. IV Backpack to help keep her hydrated, a good thing considering Sally threw up again an hour ago. So for the next 2-3 days we’re going to keep an eye on her, despite the challenges she’s still her sunny self, which we’re extremely thankful for.

We received two pieces of sobering news last week. The first was that we heard Mac, a two year old who was a regular on the inpatient side when Sally spent a lot of time there early on and we see often in the clinic, has exhausted all treatment options and the cancer continues to grow.  Sadly, the family is left to focusing on being together for the time he has left. They are raising money to cover the expenses for them to take an unpaid leave from work so they call all be together, including his twin brother. Please click here to learn more.

We also learned that another one of the kids in our group with Infant Leukemia passed away last week. I had been following King since before Christmas and exchanged messages with his mother, even putting her in touch with our doctors at MSK as she tried to figure out options for him. Three weeks ago she posted pictures of him on the couch with his older brother sister, with things going downhill from there. The post about his death was sudden, a sad normal occurrence we see with pediatric cancer.

It can change in a heartbeat, something Nicole and I are all too aware of, a constant weight on our hearts and minds. We cherish every minute with Sally, even just now as I type this she let go of Nicole and quickly clapped hands twice while standing. Then just before hitting send, she stood totally on her own for a couple seconds. Both were firsts. Her advances, no matter how small, are big deals for us as each one signifies a battle won against cancer. You show ’em who’s in charge here Sally.

Please keep her in your thoughts and prayers.

Matt