Hi all – On July 15th, we hit our one year milestone of Sally’s treatment. Achieving remission was our first big milestone, getting Sally through her first year is the second one. This week we sat down with Dr. Steinherz, the senior doctor on Sally’s Leukemia Team, a man who has been treating not only Leukemia for 40 years, but Infant Leukemia. Almost a year ago we sat with him in the same room with an abundance of questions, to which he said we should just focus on getting Sally through the first year. We had to get to this milestone before worrying about anything beyond that being that there was no guarantee we’d get this far with the odds she faced. It was a relief to have gotten here, although know we still have a long journey ahead with those challenging odds still very real.

We discussed where we are at with Sally including concerns over her digestive system, her physical development and the fact that the oral chemo she takes has been hitting her system too hard. We took a step back and he walked us through some changes to her treatment in Year Two. Most Leukemia patients have a first year like what Sally just went though, and then a reduced second year. He reminded us that because Sally’s MLL/ALL diagnosis is “about as high risk Leukemia as it gets”, they would be repeating the first intensive year, however with some adjustments:

– He will be removing the Thioguanine oral chemo for this upcoming cycle, and may remove it permanently. This is the chemo we start off with each cycle that starts all the side effects. It has baffled the entire team why she could tolerate it for months but all of a sudden even small doses bottom her counts out. They performed a genetic test on her blood to see if she had a resistance to it, which came back negative. We’re not happy about it being totally removed as it deviates from the plan that has been successful for him in the past, but trust him to make the right decision.

– As planned, Sally had her last dose of the Daunorubicin from the Red Devil family. She has hit her lifetime limit, due to the heart damage it can cause, and will never be able to receive it again. Sally will have to have an annual EKG for the rest of her life to check her heart for any damage, we are happy to have gotten past this stage and hope for better treatment one day where kids won’t have to have their bodies further damaged in order to save them.

Last dose of Red Devil.

– In its place Sally will receive a second dose of Cytarabine, which this year she only received once a cycle. We haven’t seen much effect from the one dose, but have been told adding this additional dose can cause severe nausea and high fevers/chills. In fact, last week for the first time since her first dose of it a year ago Sally had those symptoms. Dr. Steinherz told us to be prepared for Sally to potentially have a rough time with this change.

Other than that, everything else remains the same. Dr. Steinherz says that the body takes longer to recover from the effects of the chemo the longer you go on, so have to be mentally prepared that it will likely get harder for Sally. No other institution treats Infant Leukemia with a second intensive year like we’re about to do, so can’t compare it to anyone else. Dr. Steinherz told us he feels this is the best course to take with Sally, and that the last four Infant Leukemics he treated with this protocol are doing well and plans for Sally to be the fifth.

Sally received a burn from the Methotrexate chemo leaving her body through her urine. We’ve heard of this side effect, but this is the fist time she’s shown any sign of it. Between that and the fever/chills from the Cytarabine we saw increased side effects this cycle, which we hope is not a trend.

Finally, we asked about when treatment will end. There is no firm date, but they are estimating that she’ll be done in August/September of 2015 assuming everything goes to plan. Dr. Steinherz reminded us that the year to year-and-a-half after this will be when Sally is at the highest risk of relapse. Again, we need to focus on getting to that milestone first, and know it’s going to come with challenges. Our long grind continues.

In the meantime, we are living summer to its fullest. Luckily she’s felt good the last two weekends, not necessarily the case all the time during the week, so have been blessed to have so much enjoyment:

We went out to visit friends in Long Island, 90 minutes from MSK. This is the farthest we’ve been from the hospital in a year.

She even let our friends hold her, clearly she has good taste in people 🙂

Our friends at Bay Ridge Cares gave us tickets to a Brooklyn Cyclones game, Sally’s first baseball game.

We visited friends at a beach club nearby who have a cabana. It’s the closest we could get to going to the beach and was a very relaxing day for us.

The boys took Sally around in a cart, which if you can’t tell she LOVED. She even hung out in the cart and played.

Nicole put Sally on a blanket and let her put her feet in the sand, about as risky as we’d get. Here, she’s showing you one of William’s shells he found.

The last two Friday nights we’ve gone to a festival in our neighborhood. It’s amazing how many people stop to talk to us, many of which we’ve met on this journey. Clearly we’re just our famous little girl’s entourage 🙂 

We managed to eat outside at the festival, bringing William’s dinner with us. We’re still adjusting to his celiac, finding a lot of replacement things he can eat but going out and visiting friends has been tricky and know made providing meals for the meal train much more challenging for folks which we feel bad about.

Sally causing trouble at Robicelli’s our local friends’ bakery. (see sign)

Today we went out to see our friends in NJ, Sally had a blast playing with the kids and calling after their dog. Little Tyler even helped give Sally her meds. 

We know come fall that we’ll have to go back to being hermits and not able to get out and see people, so are maximizing our time on weekends as much as possible. This week we’re heading out to the Rockaways, a local beach town twenty minutes away, where a friend is letting us use his apartment by the beach for a couple days for a mini-vacation.

Last Monday we all woke up exhausted having done a festival, baseball game and beach club trip in one weekend. As Nicole remarked on our ‘back to reality’ drive to MSK for chemo, “It’s being tired from having so much fun, not from spending too much time in the hospital. Not such a bad problem to have in the grand scheme, is it?”

Please keep Sally in your thoughts and prayers.

Matt