Hi everybody – Overall, Sally has been doing quite well the last few weeks since our previous update when she broke her leg (again). She’s had a ton of energy, almost too much, to the point where it is difficult for her to settle. We think this is due to her activity being limited with the cast, although she has been able to skooch and crawl quite efficiently.
As expected this cycle, we skipped steroids over concerns due to the breaks in her leg, doctors not wanting to weaken her bones any further. As a result her counts didn’t rebound as they typically do after the early cycle chemo, so we had to give her the dreaded GCSF shot for four days to inspire cell growth. These typically lead to a lot of bone pain for her, however she handled it quite well this time around. Although as she’s gotten older she now knows what’s coming the second we open an alcohol pad to disinfect her skin, and let’s us know she is no fan of shots. During this time we also had a stretch of several days where Sally would vomit, so had to reduce the amount of her feeds and slowly work back up to the amounts she’s used to.
Last week Sally underwent an MRI to determine if there were any additional issues at play with her leg. Potential suspects included micro-fractures or necrosis, tissue death that can be caused by the chemo. Fortunately neither showed up on the test, however we did find out that Sally still has all three fractures, each at a different stage of healing.
Yesterday we returned to Sloan Kettering for the first of two days of treatment to close out this cycle. If you’ve been following us for awhile, Sally used to end her cycles with two chemos – Daunorubicin and Cytarabine. Years ago, the cycle would include three straight doses of Cytarabine which lead to severe nausea for kids that most couldn’t handle. They then switched out two of the doses with Daunorubicin, which causes less nausea but can lead to heart damage/failure. Sally hit her lifetime maximum on Dauno, the plan was to get two days of the Cytarabine to close out each cycle for the remainder of her treatment. However back in September, Sally was having such a hard time that they decided to give her only a single dose and try for the double dose next cycle. Unfortunately Sally then suffered the seizures which lead to our recent two month “break” of less intensive chemo.
Yesterday morning we were mentally ready to start the two days of Cytarabine, however were caught off guard when Sally’s doctor informed us that they were only going to do one dose of it. Apparently the team had met and decided they were “really worried” about Sally being able to tolerate it, between the seizures and the broken leg, to risk the second dose. Nicole and I were not happy, as we have been cutting back so much of her treatment that we are becoming very worried about Sally relapsing, which has a high probability. We conveyed these thoughts and had an open discussion about the pluses and minuses of doing one day versus two. We were informed that the double dose could lead to severe long lasting nausea, Sally being neutropenic for an extended time, and potentially a long hospital stay. In addition, if she was to break her bone again and her counts were too low, she could bleed out if we didn’t get her to the hospital right away. In the end, we were told it was our decision, a life or limb one.
Nicole and I didn’t even have to discuss it, much like you see on that show House Hunters, we both just looked at each other and said “We should do two doses”. Sally’s risk of relapse is too high, and although every child is different we have been exposed to the ugly side of cancer too much recently (more on that below). We have reduced her chemo to let her body heal, however we know that we now need to push her body as hard as we can for the final six months. It was agreed that over the next two weeks we would bring her in 2-3 times/week to have her counts tested so they can keep a close eye on her. Sally usually tolerates one dose of Cytarabine well, so we will have to see if two doses causes additional side effects, which our doctors think they will.
As I write this the girls just got home, Sally was exhausted and went right to bed. It was a long day for her, before the chemo she had a scheduled IVIG transfusion. She fevered shortly after so had to be woken from a nap and have tests run on her to be cleared for the chemo. She also had an X-ray early this morning and a visit with the orthopedist about her leg. He feels that Sally should go back on steroids, even if they cause more damage to her bones as they are such effective Leukemia fighters. As he put it, “Sorry to put it bluntly, but she needs to be here to treat her leg.” Another life or limb decision. Between a visit with an endocrinologist yesterday and the orthopedist today there is a discussion about giving Sally a bone density test, however that will need to wait until after treatment.
So now we just wait and see what this chemo does to Sally, she also had two doses of Thioguanine which her body doesn’t tolerate well and has been mostly removed from her treatment. We have to watch her very closely and have plans for bringing her in if need be. This week has been a stark reminder that despite Sally’s challenges, there are many who are suffering much more. Our little friend Erik, who has the same Infant Leukemia as Sally and just underwent a transplant at MSK, is really struggling. He’s been transferred to the PICU across the street at NYPH-Cornell with enlarged organs and has been intubated, having to be resuscitated earlier today. Many of you have donated blood and platelets to him, please continue your support with positive thoughts and prayers. Sally’s playmate Kylie, who has been battling Neuroblastoma and practically living at MSK for the last year was informed that the cancer has spread and may only have weeks to live. We can’t imagine what her family is going through right now, our thoughts are constantly on them. It has been almost exactly a year since our little buddy Mac passed away from the same disease.
This morning as I sat down at my desk and scanned through my Facebook feed, the first posts all lined up were an update on Erik not doing well, a post and photo about Kylie being in pain, a photo of Mac’s twin brother giving him a final kiss good-bye before he passed, and a photo of our friends’ son Ty in pain prior to his passing. It was overwhelming and I just lost it, with tears rolling down my face. Not so much sadness, but anger. More needs to be done for these kids, and when you see those faces lined up, it’s overwhelming. Nicole said the same thing happened to her this morning, we’re both suffering from a lot of anxiety and anger at what we continue to see in childhood cancer world.
It’s not OK.
Please keep Sally, Erik, Kylie, Mac’s family and Ty’s family in your thoughts and prayers.