Hi all – Sally was back at MSK today for a spinal tap as well as a bone marrow biopsy to determine if she remains in remission. This is the point in the month where we’re holding our breath and have to usually wait a week or so for results. Doctors fully expect Sally to continue to be in remission, however is still unsettling for us and will have to go through this every few weeks as the relapse rate in Infant Leukemia is historically high.

Since Sally continues to give us a hard time with eating and taking meds orally, doctors installed a feeding tube through her nose today as you can see in the beautiful photo of her above. This is very common with chemo as it can affect the taste of foods, and is especially challenging with infants as they can’t verbalize what they like or don’t like. For example Sally’s buddy Scarlett will only eat rice with ketchup and Vitamin Water, they are the only things that taste edible to her. Plus, Sally is likely a bit traumatized from all of the meds we’ve had to give her orally. A common issue with this feeding tube is that infants typically rip them out. Doctors anticipate having to surgically install a feeding tube directly into her stomach in the coming weeks. Until then, we’ll see how Sally does with this and if her appetite comes back since she can still eat food normally if she wants. Nicole says our in-patient primary nurse, Adrienne, went out of her way and came over to give her a lesson on managing it. Have we mentioned how much we love our nurses?

As Nicole detailed in last night’s update, Sally will receive intense chemo the next two weeks. She has had this specific form of chemo before, but not in the high dose she will receive. They will give it to her on Monday, and let it work in her body for 24 hours. It is such a strong chemo and so high of a dose, that they spend the following 3-4 days pushing fluids through her and giving her meds to get it out of her system. This will then be repeated for the second week, and require Nicole and Sally to be at the hospital from 9-5pm Mon-Thursday and potentially Friday as well over both weeks. It also requires a ton of maintenance at home, so we expect the next two weeks to be rough. They offered to admit us for this, but Nicole and I want to avoid it as the boys start school on Monday and want to be here for them

We were actually totally caught off guard by the news of these two weeks of treatment as we don’t recall ever being told about them before. This is a very rare procedure which is only done in the highest risk cases, which Sally unfortunately falls under. Just another reminder of how serious Infant Leukemia is. As if we needed another.

The Tenwinkels took the boys to the Bronx Zoo today, one of their last summer outings before school starts next week. We let Thomas stay up late last night as he wanted to spend some alone time with Mommy and Daddy. He did manage to go on a five minute rant about not wanting Sally or us to go to the hospital anymore. I thought it was good of him to verbalize these feelings, we know this has been hard on them.

I’ve been sick and working later than normal this week, so have only seen Sally twice and both times very briefly. I have also only held her once which required me to wear a mask. Very much looking forward to a weekend of snuggling her as its difficult not seeing my little Sunshine. Please keep her in your thoughts and prayers.

Matt