Trouble caught red handed getting into her brothers’ Jenga puzzle.

Hi all – Sally has been much more herself since Saturday, filling our home with smiles and laughter. Unfortunately she is still having the occasional pain fits, although not as intense as when she was in the hospital. She is understandably a bit traumatized from last week’s hospital stay, being upset and needy at times.

I think Nicole and I are also a bit traumatized as well. Although we never wrote about it, one of our biggest concerns last week was the possibility that Sally had relapsed. Her counts dropping suddenly and the uncertainty as to what caused it was a chilling reminder of Sally being diagnosed over the summer. It brought back a lot of painful memories. It turns out that the Leukemia Team had the same concerns, one of the reasons everybody looked so worried last Friday.

The good news is that Sally’s marrow sample from two weeks prior came up clear while she was in the hospital. It relieved the team although didn’t do much to calm Nicole and I. What if the cancer came back since the sample was taken? Luckily Dr. Kobos was in today and addressed those fears with us. She said that Sally’s marrow was as clean as possible, and a relapse couldn’t happen that fast. Plus, Sally’s counts somewhat recovered so her marrow is functioning. She looked at us both in the eyes and made sure we understood what she was saying. Although the team is confident it was a freak virus and effects of the oral chemo, Nicole and I still wonder if there’s something else at play. Sally had her counts checked today and her platelets (70s) and ANC (.3) were unexpectedly low.

Nicole didn’t have a chance to ask about it, because she had to get Sally in the car and fight through St. Patrick’s Day Parade traffic to get to the west side where she finally got in to see a GI specialist affiliated with NYPH. It was actually kind of humorous as we filled out the paperwork last night which included questions like – Is your child on any medications (oh…like 2o of them), Has your child ever had any hospital stays (no…never…), Is there any stress in your child’s home (uhhh), and questions like that which in the days before cancer would have been easy to answer.

Happy St. Patrick’s Day!

So the GI specialist, who has experience with oncology, is running a bunch of tests and is going to sit down and analyze Sally’s records, we’re supposed to call him at the end of the week. On the way home Sally started screaming out of nowhere right before Nicole drove through the Brooklyn Tunnel and continued to scream all the way through. She was finally able to pull over after paying the toll on the other side in order to comfort her, having no idea what caused it. Again, most of the Sunshine is back, but she’s still not right.

Hopefully we’ll get some answers over the coming weeks. It looks like Sally’s chemo may be delayed again due to her low counts, we need to head back in Thursday and have her blood looked at again so they can make a call. With one chemo skipped and another delay, this cycle is anything but routine.

Many have told us that things would get easier with Sally’s treatment as we acclimated to our “new normal”. I think Nicole and I are coming to the realization that the next 18 or so months is likely going to be like this, where Sally is going to continue to throw us curve balls and we can expect extreme hills and valleys. We’ve mentioned this being a marathon before, I believe the mental grind is going to be harder than we originally thought. All we can do is live in the now and take it a day at a time, continuing to be positive for all of our sakes. We also know the support we continue to receive from all of you is going to help us greatly in this journey, it has certainly helped us get to this point, and can’t thank you enough.

Some great people from the neighborhood got together and cooked us a St. Patrick’s Dinner full with birthday decorations so we could have a dinner together and celebrate my birthday as a family.We had spent my birthday apart with Sally and Mommy in the hospital,

Please keep Sally in your thoughts and prayers.

Matt