Hi all – This morning Sally kicked off her 4th cycle of treatment, she received a spinal tap with an injection of chemo into her spine like she has many times in the past. With the first two months being 30-day cycles, and the last one being 60-day, she is now in her 5th month of treatment for Infant Leukemia. The plan she is on for this 60-day cycle, called Maintenance 1, is very close to what she will receive for the rest of her treatment. The biggest difference from the last cycle is that there are less spinal taps, like the one she received today. However, they will increase the dosage for some of the chemo each cycle to see how much her body can handle, so can’t always expect her reaction to be the same as the previous cycle.

If not for the high relapse rate of cancer in Infant Leukemia, Sally would switch to a less intensive treatment plan in her second year (called Maintenance 2), but for now Sally isn’t fortunate enough for that. All of this can vary, and depends on Sally’s body continuing to react well to the treatment, so all we can do is focus on the current cycle. We also gave her the oral chemo this evening and will do so for the next couple days. Last time, this gave her a lot of nausea, so Nicole is giving her meds that will hopefully help with it this time.

Sally was so excited to have Thomas coming to treatment with her today.

Waiting to be called, Thomas was a bit nervous about the surroundings when he arrived.

Doctors also took a bone marrow sample today, it usually takes 7-10 days to get the results that will tell us if Sally continues to be in remission. This is the period in the cycle where Nicole and I hold our breaths, hoping and praying that the treatment is still working. Talking this week, we’ve both been in a bit of a mental funk, having a down week emotionally. We first read of a 13 year old boy in Ohio last week with cancer, his dying wish was to spend one last Christmas at home. Knowing that he likely would not make it that long, the town came together and decorated the neighborhood for Christmas so he could see it for his final journey home from the hospital. On Monday, young Devin passed away. Also this week Nicole and I read  about a woman who has lived with the effects of childhood cancer for 20 years. She is married with children, but has had a low standard of life due to all of the treatment she went through and that she will likely die at an early age. Finally, a 10 year old girl who wrote about having “survivor’s guilt” since her friend, who was diagnosed with cancer on the same day as her, passed away while she achieved remission. Sadly, her cancer just came back and will now need a bone marrow transplant, her last option for survival.

We do our best to take this one day at a time, trust us, we’re mostly upbeat and positive. But these waves of emotions wash up on us unexpectedly every few weeks, an overwhelming wave of sadness that our daughter has to endure this and the uncertainty ahead. Sally has had a good week, we’ve seen a lot of physical development from her that we hadn’t seen since this all started. With her hairless head, we are sometimes mentally fooled into thinking she’s still an infant and being behind developmentally is normal. That facade continues to fade as we see her growing and kids of the same age already walking and already far ahead. In the grand scheme of things, this is all minor, but is one of the few visible effects we see of the treatment this early in her age and a reason we’re so focused on her OT/PT.

Don’t worry, we typically take a day or two to digest and deal with the emotions before putting them aside to get up and keep fighting, we know we can’t dwell on them. Sally has proven to be a fighter, she has an amazing support network of family, friends and community. One of the local moms painted this picture, which was inspired by Sally. It’s hanging proudly in our living room and a reminder of that support.

Thank you Jackie!

Many people have recently remarked to me how Sally is always smiling in photos, so assume she must always be doing great. Sadly, that isn’t the case, there are plenty of times were Sally is miserable or in pain. Tonight you could tell that the chemo she had this morning took a lot out of her. Maybe its just natural parent instinct, but we don’t typically take photos of these moments as we’re so focused on her. Like any Mom or Dad, we like to share Sally’s infectious happiness, that wonderful smile that she has, so that’s when we think to take a photo and share it.

In the end getting to Maintenance 1 in her road map is a milestone, it’s like finally settling into a groove for the long haul. We can somewhat plan ahead for things, such as weeks that we know will be rougher than others. However, one thing we’ve learned about pediatric cancer, things can change once you get used to something. We can’t get too ahead of ourselves, and need to take things a day at a time. Sally has somewhere around 22 months to go of Maintenance 1, or 11 cycles. We can’t know how many exactly, all we know is it’s a marathon, and we’re just getting warmed up.

Please keep Sally in your thoughts and prayers.

Matt