Hi all – I wrote up an update over the weekend but had technical challenges adding photos on my phone. First off, we wanted to share with you Sally’s new logo, which incorporates an owl and is now on this blog and her Facebook page. Sally has become identified with owls, which has been totally organic and unplanned. It all started back when she was first born and Nicole put an owl decal on Sally’s bedroom wall for no reason other than it looked cute.

On Sally’s first birthday she was in the hospital having her feeding tube surgically installed. It was unfortunate to have happened on her birthday, but we were cheered up with an owl shaped birthday cake.

After that, owls just started popping up everywhere.

A lot of love and hope went into the logo. The graphic designer, a coworker and friend of mine, lost his mother to Leukemia. His 5 year old daughter, Lily, has taken interest in Sally and wanted to help pick the owl. She combed through hundreds of different types of owls. After the options were sent our way and she crawled into bed, she told her dad:

We want to thank Lily and her dad Kevin for designing the logo for our little girl. We’ve also reworked the copy in the logo and on the explanation portion of her pages to bring attention to her specific Infant Leukemia and MLL diagnosis, which we hope to spread more awareness about as it differs from Leukemia in older children.

Sally continues to struggle with the RSV virus she’s had for two weeks now. Her cough has worsened a bit over the last 48 hours, and she threw up twice yesterday, so we are continuing to monitor her closely as we know her situation could turn quickly. She is being fed almost entirely via her feeding machine which can slowly deliver the breast milk.  This requires Sally to be “tethered” to the backpack machine most of the day which presents some logistical challenges.

As of Thursday, her blood counts were in good shape, so are a bit surprised that she has yet to fight this virus off. At this point in the last cycle, Sally was admitted for the week with low counts and we spent Thanksgiving in MSK. As a result, and due to all of the challenges she went through last cycle, they reduced the dosage of last week’s chemo to give her body a bit of a break. They’ll continue to up the dose in the future to find the sweet spot that Sally’s body can handle.

Sally will return to Memorial Sloan Kettering on Thursday for her Vincristine. For this cycle, her primary day will be Thursday treatments, unlike last cycle which had us there almost every Monday. She will also begin her week of steroids, which brings on hyperactivity in her, but also makes her hungry so hopefully it will help with her eating challenges.

Sally learned to blow kisses and high five last week!

She did a great job wearing her mask into the hospital due to the RSV.

William did a great job helping Mommy while Daddy and Thomas made a quick trip to Buffalo this weekend. Here, he is helping her with her nebulizer treatment.

On Thursday, we hopefully will get results from Sally’s marrow test last week that will confirm she’s still in remission. Until then, we’ll continue to hold our breath. Nicole and I had a rough week last week, in our very small Infant Leukemia support group online, a young boy with the disease passed away here in NYC. Only hours later, another was told their daughter relapsed. That night, we found out that a fellow parent in our neighborhood who has been battling cancer has decided to go on Hospice. The day was a jolting reminder of the world we now live in, and Nicole and I took a moment to embrace and cry for those going through this.

What lifted us was this article about how we should be thankful its us that are there for our children. After seeing a child that looked to be neglected once on the floor (a rarity at MSK), I never again questioned “Why Us?”. Thank God Nicole and I are Sally’s parents, and that we’re there to get her through this.

Please keep Sally in your thoughts and prayers.

Matt