Are you implying I can’t eat this?

Goofing around with William before heading to the hospital.

Hi all – If you remember last week, Sally was on Mr. IV Backpack as she was nauseous and still had diarrhea. When we say diarrhea, we’re talking 12-18 poops a day, constantly changing her. She also had a terrible diaper rash and yeast infection, so changes were quite painful for Sally. On Saturday she had a great start, but lacked energy in the afternoon. When Nicole got home from work we planned on bringing her into MSK, but she woke up from a late nap in high spirits so decided to hold off. We did speak to Dr. Kobos from our Leukemia Team, who happened to be on call at the hospital. She asked if we could bring Sally in Sunday morning so she could see her.

So Nicole and Sally headed into MSK to have her blood checked and meet with Dr. Kobos. The thinking up to this point from the team was that Sally was just experiencing after effects from the noro virus she battled for weeks. Nicole and I never bought into that, through our Infant Leukemia group we saw that many kids going through treatment at this age were having similar problems. Our thinking was that all of the chemo has taken their toll on her still developing stomach.

Having exhausted all the medicine options and a week and a half of nausea and diarrhea, conducting countless stool sample tests and weeks of getting to this point, Dr. Kobos asked if Nicole was willing to try some “voodoo” – AKA alternative medicine. (As a side note when Nicole sent me a text about this, I thought they were seriously talking about some form of modern voodoo). Dr. Kobos, in addition to working on the Leukemia Team, also works on the Transplant Team. She has had success treating bone marrow transplant patients with similar symptoms by injecting gamma globulins through their feeding tubes. These are the antibodies that Sally receives transfusions of, but always through her IV similar to a blood transfusion. She advised Nicole that there is no real firm science to back this successful treatment up, and they had never done it on a kid as young as Sally. At this point we were open to anything, so agreed to try it out.

On the side of the road fixing Mr. IV Backpack while trying to get to MSK.

In the meantime, doctors also encouraged us to try giving  Sally some yogurt through her tube in hopes of encouraging good bacteria to grow. The thinking was that the drugs and recent antibiotic she was on wiped out all of her good bacteria. So on Sunday we started giving her yogurt daily, and on Tuesday we started giving her doses of gamma globulins through her feeding tube. Wednesday night into Thursday morning, Sally went 12 hours straight without a bowel movement for the first time in two weeks! She also began tolerating higher feeds and we were able to remove her from Mr. IV Backpack. We’ll have to continue observing her over the coming days, but early signs point to the ‘voodoo’ working.

No poop for 12 hours makes Sally happy!

This was an “off week” for Sally’s treatment, however even though she didn’t receive chemo, she and Nicole were at Sloan Kettering FOUR TIMES. Next week is Hell Week 2, where Sally receives the dreaded Red Devil/Daunorubicin and will be at the hospital during the day Tues-Thursday. I always say Hell Week 1 is rough physically for everybody because of the steroids and past issues we seem to have that week. Hell Week 2 is always a tough mental week as we approach the end of another cycle and have to inject chemo into Sally that is outdated and potentially damaging her heart. The three straight days is a grind for Nicole as well.

We had both sad and happy news this week. We learned on Monday that our little buddy Mac at MSK passed away. We knew it was coming, but didn’t make hearing the news any easier, Nicole and I embracing in a long teary hug upon receiving the news. Although we’ve sadly watched kids we follow online who you feel like you know pass away, Mac was the first kid we personally knew at MSK to die from this terrible disease. We will miss him and his family, who like us have been regulars at MSK for quite awhile now. Being there without them will be sad and strange.

Yesterday, the smiles of two beautiful girls brought much needed happiness to us. Sally’s buddies Scarlett and Cami had been selected for a Stop & Shop grocery store promotion in the NYC area to raise money for MSK’s Department of Pediatrics. Below are some of the pictures from the kickoff at Giants Stadium:

Sally has also made some progress over the last week. I noticed last weekend that she kept picking things up and saying “ello”, looks like she’s ready for her own cell phone. She also started saying “uh-oh” and can point to body parts like her head and ears when asked. The best is that Sally now gives kisses, which you can see by Clicking Here. I didn’t know this and asked for a kiss, when she actually gave me one, I was a puddle of the floor. The chemo has delayed Sally’s development, so seeing progress always brings Nicole and I so much happiness, especially considering how hard Nicole works with her on it.Sadly, the beautiful blonde hair that Sally has grown has been falling out. We knew this would happen, but seeing her blonde hair would sometimes let you forget she has cancer, even if for a split second.

“ello”

So we head into Hell Week 2 and the final stretch of this cycle, which has been a rough one. Nicole is exhausted between all the trips to the hospital, the hospital stay, battling with staff to get her what she needs and weeks of Sally’s nausea and diarrhea. I continue to be in the busiest stretch of the year at work, so can only lend so much support. We just continue to grind away and take it a day at a time.

Please keep Sally in your thoughts and prayers.

Matt