Getting treatment on Tuesday after a week of delays.

Hi all – we realized we haven’t written in almost two weeks, although we’ve been posting updates to Sally’s Facebook page. Last week, Sally’s treatment had to be delayed due to low counts and lingering effects from the challenges she faced while admitted. The Team was unclear why her counts were low, another thing to keep an eye on. Her ear was red so they put her on an antibiotic (more on that later) and also determined she was low on her gamma globulins so needed a transfusion of those. They had us start giving Sally G-CSF shots at home, which promote the marrow to grow white blood cells. This is the first time her treatment had been delayed this long, so we were obviously concerned.

On Saturday, I had to give Sally the shot since Nicole was at work, it was the first time I’d ever done it. I was nervous about it all morning, mentally getting myself ready. I had nice folks reach out and offer to do it for me, but told them I needed to conquer this. When it finally came time, I opened it….to find the needle was bent.

90 degree bend.

Luckily I was able to get a hold of Nurse Mama Adrienne who walked me through how to prepare another syringe. I went to do it again, had my sister Cindy holding Sally’s leg, but then knocked the shot over and it landed with the needle sticking straight into the couch! I couldn’t risk using it, so had to prepare a 3rd shot. Finally, I did it. It sucked, but I did it, and did a shot of scotch after to settle the nerves.

This hurt me more than it hurt her.

It was nice out, so we also got to bring Sally outside to the playground for the first time in forever. The boys had a blast pushing their little sister around.

Thomas pushed Sally over to the swings so she could watch him.

Sally having a blast getting a tour from William.

Also last weekend, I took and posted the below picture to Sally’s Facebook page. It shows Nicole asleep at the kitchen table expressing milk, a sign of her exhaustion. The good folks at Truth365 posted the photo and offered to give Nicole a spa day if 1,000 people liked it, which they immediately did. I wanted to raise the ante, so through talking to some parents in Bay Ridge we had a makeover and night out donated to her IF we could get 5,000 people to like it. By Sunday, we reached the goal! We’ll post details on that soon. I also am going to be going for a pedicure/manicure and have my nails painted pink (Esme sent me a video asking that they be with sparkles, how can I say no)…all while wearing a tutu, which I offered at 4,000 likes. God help me, anything for the cause.

Nicole and Sally receiving the news of 5,000 likes, just before marching in the parade. Sally appears to be raising a pint of Guinness as one person remarked.

On Tuesday we brought Sally in to find that her counts were high enough to resume treatment. The shots did their job so she received methotrexate. She also received an echo cardiogram to check her heart due to the Daunorubicin (Red Devil) chemo she receives. They can’t even do the echo close to the actual Dauno, because otherwise we “wouldn’t like the results”.  The team agreed to take Sally off of the antibiotic as she was pooping 8-10 times a day. Our concern right now is that all of the drugs she is getting are really taking a toll on Sally’s stomach. Through our Infant Leukemia group, we’ve learned that many of the kids this young that go through this have similar problems. Moving forward, we’re going to avoid antibiotics unless absolutely necessary, Sally is just on too many medications.

Last night we were honored to be invited to the Annual MSK Blood Bank Reception, attended by the top blood donors to the hospital. We couldn’t stay long and had to spend most of the time in a secluded room with Sally, but I was able to give a speech thanking attendees and explaining how their blood saves lives, including Sally’s. Sally and Nicole stood next to me, she patted Nicole’s back when Nicole was feeling nervous, and as I was speaking (also nervous) reached over and held my arm. She really is a special girl.

All dressed up for the speech.

When we arrived home, Sally threw up for the first time this week and continued to have nausea today. She also has a terrible diaper rash from the constant pooping, which we think may actually be a yeast infection. Nicole brought her into MSK in order to get an IV bag for the weekend this afternoon, which she had to argue for. We’ve been here before too many times now and know where her symptoms will lead us, so want to be on the safe side. Plus it’s a weekend at MSK, need we say more?

So we’re hoping the IV Backpack keeps Sally hydrated and well enough to get us through til Monday when we’re expected to head back in for a CBC. Next week is an “off week”, Sally then receives the Hell Week 2 chemo, including Red Devil. We also had a rough emotional week. We learned on Sunday, after marching in the St. Patrick’s Day parade, that our little friend Mac is expected to only have 1-2 weeks left to live, the cancer is spreading faster than expected. Lindsey and Emily were able to get them down to Miami for their wish of one last trip to the beach together, only to have to rush back due to his pain. We can’t imagine what they’re going through, our hearts have been with them all week.

Also, a little 8 month old girl with the same Infant Leukemia that Sally has passed away. Belle was so cute, Nicole and I loved seeing her pictures every week. Her mom reached out and introduced herself to us months ago, they’re in Australia and didn’t know anybody else dealing with Infant Leukemia so we were able to connect her with our support group, keeping in touch ever since. The news was crushing, she sent me a note last week indicating that it didn’t look good but was holding out hope. Finally, we learned that a mom from our neighborhood passed away from cancer on Wednesday. Although we didn’t know her personally, we share many friends and their story was well known because she and her husband were both diagnosed with cancer within days of each other shortly after having their child. We feel a kinship with them being our neighbors, this awful disease has robbed all of us of a normal life.

Cancer is evil, sadly we’re seeing it at its worse this week. Please keep the families above, and our little Sally in your thoughts and prayers.

Matt