Having fun in the playroom while waiting for Dr. Steinherz.

Eating a pamphlet, this kid loves paper.

Hi all – today we headed in with Sally for her treatment at Sloan Kettering. Last night, Nicole and I were talking about how we weren’t very clear on the path of Sally’s treatment, so decided to see if we could both get a meeting with one of her doctors to ask some questions that have been nagging at us. Luckily, we got to sit down with Dr. Steinherz himself. Some things we learned:

– Sally is in the ‘very high risk’ category, which we knew. He mentioned a 50% survival rate. What we suspected from reading things (which he confirmed) is that Sally’s 9;11 translocation specific diagnosis is ‘very high risk’ as well compared to other types of translocations, which is why her chemo will be so intense for 2 years.

– They’ll be increasing her levels of chemo every cycle to see how much she can handle as her body grows and adjusts to the treatment. We can anticipate this getting harder for Sally before it gets easier.

-Historically the earlier remission is achieved, the better the odds of the treatment working. Luckily, Sally achieved remission in the first month, a great sign.

– How long she has treatment could vary, but we can assume her 2 year clock started ticking a few weeks ago. He also said we won’t be able to breath a sigh of relief for at least 1.5-2 years after treatment.

After all of this he made clear that while it’s good to know future plans, we have to take it one day at a time. She could relapse at any time, or her treatment could have to be altered. Every kid is different and they do their best to treat to each specific patient’s needs. As he said, “let’s get her to the one year mark first”.

We had this conversation while Sally was recovering from being put under for her spinal tap. They brought her into the room after and we noticed her central line (the tube in her back) was leaking a little blood. The nurses had issues with it both on Saturday and that morning, so they sent Sally down to have an xray to make sure it was OK. Nicole sent me this picture of a plastic thing they had to put her in to get shots of her chest:

Sally did well being in this, I had to get to work otherwise we would have gotten a photo of her in it.

If you want to see it’s purpose, click this for a picture.

Sally did well with it, and verified that her central line was OK. The staff was hesitant to give her the other chemo through it until they confirmed it was inserted correctly. If this specific chemo leaked into her body, it would kill any tissue it came into contact with. Obviously…that would be bad. They put some solution in it to clean it out, got it working and started the chemo.

This all took a couple hours, so by the time they finished it was 6:30pm. Sally also managed to get some physical therapy as well today. Unfortunately, it was a rough day for her. She was uncomfortable all day, and threw up all over herself and Nicole. Also, she pooped through her diaper and outfits a couple times. Some of this is from the chemo she got, some is from the antibiotic she’s on from the ear infection.

One bright spot today was meeting a cute little girl named GiGi who is exactly one month older than Sally. GiGi has a sarcoma and had a tumor removed last month and is on chemo now. She looks almost identical to Sally, they could be twins. She just learned to walk so it was funny to see Sally’s “twin” walking around. Nicole and I both looked at Sally and said “alright, time to get off your butt and start walking already.”

Finally, the other thing Sally got today was a flu shot. Nicole and I have avoided this. I used to get the shot when I was in my earlier 20s when I worked at a hospital (across the street from MSK of all places) but always got the flu. So I stopped getting it, and never got the flu again. Nicole has had bad reactions with it. However, if Sally gets the flu it would be very serious, it’s something we can’t risk, so decided to give it to her. All of us also have to get it now, the boys included, which we’re not looking forward to with them. Gotta start thinking of a good reward now. It’s also a reminder that as we get into cold and flu season, what little social life we have with Sally will be pretty much non-existent as we can’t expose her to germs and people.

Sign in the lobby of MSK, we may need the same for OUR front door.

So as Nicole said, today was a lot to take in. We got some answers, but have to store them in the back of our heads and go back to taking things one day at a time. Nicole also met a 4 year old girl today, turns out she had Infant Leukemia at 5 months, even higher risk than Sally being diagnosed at 9/10 months. It was reassuring to see somebody that MSK got through it and was just back in for a routine checkup. It’s a long way away, but intend for it to be Sally getting that routine checkup one day.

Please keep Sally in your thoughts and prayers.

Matt