Hi all – On New Year’s Eve, Sally returned to the more intense chemo plan that she was on before the seizures she suffered in October. Our whole family spent the day at the hospital, getting there at the crack of dawn so Sally could undergo her spinal tap of chemo and have a bone marrow sample taken. The spinal chemo was a surprise to us as the team had said they would no longer give her chemo in the spine after the seizures. After reviewing the current adjustments to her treatment they decided to give her a different spinal chemo and see how she handles it. A major reason is that with Sally’s ALL/MLL diagnosis, Leukemia cells tend to hide in the spinal fluid causing relapse in the central nervous system, so they were hesitant to stop with the treatment in this part of her body.
We did get some fantastic news in that Sally has grown 6 inches since she started treatment, which is huge! Most kids don’t grow at all, or only half that throughout treatment. It’s comforting for us to know that her body is still working to grow despite the challenges she’s been up against.
By the time her IV chemo finished and we got home in the evening on New Year’s Eve, we were all too tired to stay up for the ball drop, especially the boys who begged us to go to bed. We planned on watching it on New Year’s Day, but unfortunately Sally started throwing up from the chemo. We knew then that our 2 month break was officially over and we were back to the grind.
Over the next few days her health returned and we got back to ‘normal’. We noted that William had become very clingy with Sally, demanding to see her as soon as he woke up and wanting to be around her more and more with lots of hugging. One night he was wiping things down and started sweeping the floor. We asked him what he was up to and he told us that dust causes cancer and he was cleaning the dust so Sally would get better and not have cancer anymore. We realized that he was having a rough couple days and this is how he was coping, we let him know that he could talk about his feelings with us when he was comfortable and gave him extra hugs and love.
On Thursday Sally returned to Sloan Kettering for chemo, an IVIG transfusion, a renal sonogram (to check her kidneys and bladder following her UTI), an X-ray and an appointment with the orthopedist to check on her leg. Her sonogram came up clear and her X-ray showed that her fractures had healed to the point where she was cleared to slowly start walking again. The team also decided to take out steroids this cycle to help her bones heal and may reduce her steroids in the upcoming cycles. We are often asked why steroids are used for Sally, why we can’t just stop them since they cause her bone damage. With Leukemia, steroids act like a chemo because they specifically kill Leukemic cells which is why they are integral to her treatment. It’s one of those life or limb decisions, Sally is also on Calcium and vitamin D to encourage healing of her bones.
Thursday night she enjoyed having Nicole and I walk her (supported) around the apartment. I noticed how much she had grown since she broke her leg (2 inches during her ‘break’!) by the reduced distance I had to bend over to hold her hands. She was so happy to be getting around again and kept asking us to walk with her. However on Friday Nicole said she had no interest in walking, and that night had a very restless sleep. On Saturday she was clearly uncomfortable and kept grabbing her left leg (same one she broke) so we gave her Tylenol throughout the day. At dinner, I picked her up and spun her around to check her diaper and she screamed out in pain, I believe I had bumped her leg but happened so fast I’m not sure what I did but she screamed for 20 minutes. She then calmed down in time for Nicole to get home from work and it was as if nothing had happened. She went to bed but woke up in pain so we decided to give her Oxycodone, a stronger painkiller. She was so hysterical Nicole and I sang ABCs to her for 20 minutes to keep her calm so she wouldn’t throw it up. After awhile she cheered up and went to bed, but was up half the night.
We took her into MSK yesterday where they did X-rays almost right away. It was taking a long time to get results so we knew something was up. The doctor on call then told us that she had a “buckle fracture” in her tibia in a new location from the previous fractures. She was waiting on the orthopedist to come and let us know next steps. Of course a few minutes later a guy dropped off the Cast Cart, so we knew then what the next step was. The orthopedist was a young doctor who did an amazing job with Sally. All he kept saying was the Sally was the most behaved 2 year old he had ever casted. He let us know that the break was likely caused by Sally walking on her bone which is still weak from the treatment. She will need to keep the cast on for at least 4 weeks. We’re taking this news a lot better than the first breaks as we knew this could happen, but we’re still frustrated that she’s dealing with yet another setback.
As soon as we got home, Sally was skooching all over the place, this morning she was back to her old cheery self as if nothing happened. We just want to say how proud we are of her. Through all of the breaks, the X-Rays, the appointments, the casts and even when they removed the first cast she has been so cooperative. Everybody at MSK keeps commenting on what an incredible patient she is and how well she handles all of this adversity. It really is a testament to her strength, character and toughness.
In the end, we’re counting on these traits to get her through this. In the last two weeks we’ve had losses in our cancer community, they are at the forefront of our minds and our hearts go out to their families. One was a friend of Nicole’s who fought alongside Sally at MSK, another was a fellow patient of Sally’s on the 9th floor, the third in our Infant Leukemia group who suddenly and unexpectedly deteriorated and passed away over a 48 hour period, only 4 months away from finishing treatment for the same Leukemia Sally has. They are stark reminders of the monster we are up against.
Please keep Sally in your thoughts and prayers.