Hi all – We realized today that it’s been exactly three months since Sally was formally diagnosed with Infant Leukemia. It feels longer, Nicole says it’s felt like a year. It has been a bit longer, and many who follow Sally’s updates have only started following recently and not know the whole story which I’ll quickly summarize.

This all started back in mid June when Sally came down with what we thought was a virus or the flu. She was very pale and totally limp, very unlike her usual energized and smiley self. I took her to the ER while Nicole was at work, the doctor on duty actually said, “This has symptoms of Leukemia, although I’m sure it’s not that, we’ll take some blood and rule it out.” They gave her an IV in her thumb sucking hand (she couldn’t suck her thumb, and never sucked it again) and admitted her. Two days later, the doctor broke the news that she had Leukemia. Thinking back, it still sends a chill down my spine. I broke down, and then had to call and tell Nicole, doing my best to compose myself before placing the call. No use, as I broke down again after a few words. After that was a whirlwind, we had hours to make a decision as Sally’s kidneys weren’t working correctly and selected Sloan-Kettering, knowing their reputation. If you ever want to read about those first few days, please see this post on Sally’s old blog: Why Did This Happen?

They installed her central line, and were just getting started with chemo when they stopped as they couldn’t confirm the diagnosis. Several days later Sally was back to herself and we were released, leaving doctors baffled but thinking it was all a freak virus. We thought we had dodged a bullet and started to feel regret and a bit of embarrassment over putting everybody through that experience, as well as survivor’s guilt seeing kids going through cancer firsthand. That was short lived, as on July 5th Sally was diagnosed with MDS, or Preleukemia. We were told Sally would develop Leukemia, it was just a matter of when, like a ticking time bomb. I asked what her prognosis was, and will never forget the answer – “Excellent, unless she develops Leukemia as an infant before her first birthday, then it’d be grave. If she can hold out til she’s three, that’d be ideal, but just getting her past 12 months of age increases her odds dramatically. Hope for that.”

Ten days later, during what we thought would be a routine blood test, Sally was diagnosed with Infant Leukemia. We had a morning appointment and both of us were there, I was planning on heading to work right after. She got her blood taken as always, and as Nicole later remarked, she knew something was wrong as they were taking a long time to call us in to discuss the results. They brought us in and broke the news, it was overwhelming and hit us both like a sledgehammer. We were told we needed to admit her and start chemo/treatment that very night as her White Blood Cells were over 80% Leukemic. We were also told that she had Leukemia this entire time, and that her body had somehow fought it off a month earlier, which had never been seen before. We also learned how nervous they all were for her a month earlier as she was extremely ill and her kidney’s weren’t functioning well, and that starting now gave her a much better chance.

Nicole went home to gather things to spend the night, and we were moved to a temporary room until a spot opened for us on the in-patient side. Sally and I were alone together, and I thought back to what the doctor had said only days earlier about getting Leukemia as an infant. I didn’t cry and was more or less in a cloud, beyond terrified. But Sally was just sitting there, her happy and smiling, oblivious to this earth shattering news and knew I had to be strong for her. I snapped this photo of her while we waited:

Nicole returned and we were admitted. I stuck around as I wanted to be there when the chemo started, knowing it was the start of a long journey for our family. The bag it came in was scary:

I remember holding my breath as it started and watched the chemo make its way slowly down through the tube and into her body. I had to remind myself that this was a good thing and helping her. I took this final photo of Sally and Nicole before heading home so I could be with the boys in the morning.

So, three months later, here we are. Sally is in remission, which shows good promise for the treatment she’s on. We get varying answers about how long she’ll go through this. We’ve been told two years from that first day, and have also been told two years from when she starts maintenance next cycle. Infant Leukemia is very unpredictable and has a high relapse rate, especially Sally’s specific chromosome translocation diagnosis. If she relapses, she’ll have to receive a bone marrow transplant. Even if she gets through the two years successfully, the six months after its completion is the highest risk for relapse, so won’t be able to even begin contemplating life after Leukemia til that point. In other words, we’ve got a long way to go, these three months are just the tip of the iceberg.

Nicole and I want to thank you for all of your support – the fundraisers, the meals being dropped off, the last second favors, tolerating our inconveniences, stopping us on the street even if you don’t know us. Even posting here and on Sally’s Facebook page, I assure you we read EVERY single comment and they mean more than we can ever convey. We don’t want to have to do this alone, and everybody’s support is helping us get through it.

We love you all, thank you for joining us on this journey. Please keep Sally in your thoughts and prayers.

Matt