Sally picked out this dress on her own by screaming with glee when she saw it in my hands going through the clothes in her drawer.

Hi everybody – We realized we haven’t written in a few weeks, mostly because we’ve been getting Sally through the side effects of the chemo from Cycle 8. We had been told that we would be skipping the oral chemo that always knocks her counts down and sets off a chain reaction of side effects in order to give Sally a break. However just before starting the cycle our team decided to move forward with the oral chemo according to schedule. Sure enough, two days into it Sally began vomiting and the chain reaction started.

A week later in the midst of steroid week, we had to start giving Sally the GCSF shots at home as her counts were totally bottomed out and needed them to rebound faster. This resulted from only giving Sally a half a tab daily dose of the oral chemo. We started at almost three full tabs a day almost a year ago, and have had to decrease it all the way down to almost nothing as it hits her so hard now. That weekend we had to bring Sally into Urgent Care to get checked out as she started having GI issues and was very lethargic. Her counts were starting to finally rebound but were still low so the team had us give her an additional GCSF shot. That did the trick as a few days later our Sunshine returned, although with ups and downs over the week.

For a couple days she was very lethargic, just staring off into space and very needy.

At MSK getting checked out on a beautiful Saturday afternoon.

Luckily she was cheery for 4th of July weekend, and her counts were strong so were able to get her out. We made it to a bbq with friends on the 4th, with Sally having a ball being at somebody else’s house for a change. On Saturday, Nicole and I managed to get out and celebrate our 9th wedding anniversary. We didn’t plan on staying out long, but ended up staying for several hours tasting wine and beers at a local restaurant while chatting about things both cancer and non cancer related. It was really nice to get out and be a normal couple, the owner spent a lot of time educating us on our beer and wine tastes. A friend even surprised us by picking up the tab (thanks John!)

Our Sunshine returning.

Happy 4th of July!

Getting a chance to pinch somebody else’s cheeks for a change.

Nicole was very excited about getting to try wines on our anniversary date.

Also that week we found out that our youngest son, William, has Celiac Disease. It’s an autoimmune disease that prevents him from consuming gluten/wheat in any form. William has been undergoing several tests over the last few weeks after complaining of leg pains, displaying ticks and experiencing a slowing of his growth. Having heard the diagnosis stories of kids with cancerous tumors that sounded similar, as you can imagine we had been extremely worried. That may have just been a result of everything we’ve been exposed to, but we wanted to rule out every possibility. After undergoing X-rays, blood tests and an endoscopy, the Celiac was confirmed last week. It’s fairly common, and nowadays there are lots of gluten free options, however it’s a lifestyle change for us switching our entire home to a gluten free diet and trying to experiment and find things the kids will eat both at home and school/camp. We’re also going to continue testing to ensure there are no other issues we need to address with him should removing gluten not lead to his improvement.

William after his endoscopy.

We’re almost through this cycle, next week we have to bring Sally in for an EKG to check her heart to make sure there is no damage from the chemo, particularly the Daunorubicin that she’ll get again in two weeks. Also next week, we’ll hit our one year mark of treatment. We plan to sit down with the team and discuss the last year, have some questions answered and set expectations for the next year of treatment which will be very similar to this year. The hope is Sally not bottoming out in her counts as much, minimizing GCSF shots or blood transfusions so her body can start building cells on its own again. It’s a tough balancing act – giving her the amount of chemo she needs to fight the cancer but not doing too much damage to her body in the process.

We can’t have a dog, so Nicole bought this robot dog after seeing one of the kids at MSK with one. Sally LOVES it, she’s always asking for it by saying “gog” when she sees it.

We’ve been experimenting giving Sally Ativan when her nausea gets bad, it works well but gives her a ton of energy. Here Nicole has her pushing the stroller at night trying to burn some of that energy off so she’d go to sleep.

Sally had to have a red blood transfusion this week, it came with the pink tag signifying that it was donated directly to her at Sloan. Thanks to all who donate, you are saving lives!!!

Overall it’s been a couple of hectic weeks between Sally’s side effects, William’s diagnosis and an unexpectedly busy time at work for me. We’ve been sending the boys to Sunrise Camp out in Long Island, a camp that is specifically for kids with cancer and their siblings with all costs picked up by charity. The boys LOVE it, they get out of the city and get a real camp experience surrounded by kids who understand what they’re going through.  Summer has really gotten us out doing things again, we’re hoping to get out to visit some friends over the next few weekends which can be challenging for us to do in the colder weather. As Nicole said, we’re going to live our lives to the fullest this summer before we have to crawl back into our secluded cave.

Please keep Sally in your thoughts and prayers.

Matt