Journal entry by Becky Lambert —
Hi Everyone! I don't know who will still read this, since I haven't been active on Caringbridge in so long. What a tough year this has been for all of us, huh?
Serena is doing well. She has been in remission for 6 years and counting :)) She is in the long term survivorship program. We go once a year to CHOP (Children's Hospital of Philadelphia) and see a variety of specialists. We still can't say that she is NED(no evidence of disease) or cancer free, because there are still spots that show up on scans. But that is ok, because she is doing great and we have every reason to think that she will continue to do well. She was on a growth hormone and it worked! She reached 5 feet in height. She is 16 now by the way. She decided to stop her growth hormone when she reached this height. Jeff and I support that decision. She is basically only on one medication- a low dose losartan to help with her kidneys, heart and slightly high blood pressure. She is still on Juiceplus supplements and Vitamin D to help keep her immune system strong and to help with her energy level. Considering all of the medications she has been on in the past, we are so grateful to be down to this small regimen.
Since we live in PA, we are so fortunate that Serena has been physically in school all year. She had the option to go virtual, hybrid or full time brick and mortar. She chose to be there all 5 days in person. Jeff and I completely support this choice. She had to do distance learning for a few months at the end of last year when everyone was quarantine and she had a really hard time with that. She got depressed and lethargic. She also had dance on zoom calls. This was tough as well, although we were grateful that at least she had that interaction with her dance friends online and had physical activity to help keep her spirits up. Serena was involved in the competition team for 4 years and covid cancelled all of the competitions for last year. :( They did have a recital in June of last year. It was a different type of recital to say the least! It was really cool! It was set up outside of the studio in the parking lot, and the studio owners Ms. Alexa and Mrs. Antonia set up a schedule to keep people social distanced as much as possible. They put a lot of thought and planning in to the event and my hats off to them! They made it work. I think not many dance studios still had a recital last year, so we were so grateful to have had ours. And this was a biggie for Serena, because she decided not to dance anymore. It was a tough decision, and I as a dance mom will miss it in so many ways. But I agree with her decision. She gained a lot from the experience of dancing all of these years. Her health benefited tremendously during her growing years. Her endocrinologist Dr. Mostafi-Moab was thrilled that she was dancing and doing weight bearing exercises as it was really good for bone health, etc. In fact, she gave Serena a hard time at our last appointment and wanted a definite plan on what type of exercise/activity she was going to do instead of dance. We are still working on that. One issue was that she hurt her ankle last year at dance, and had to sit out A LOT during practices. It was a real bugger to get healed. There were a LOT of physical therapy appointments involved and a lot of frustration on Serena's end. This definitely contributed to her deciding not to dance anymore. She was starting to get into skateboarding so that seemed like a good activity for her... until, she hurt her ankle AGAIN!!! back in the boot for a few more months. How aggravating. 2 times, same ankle, hairline fractures both times. Anyway, she seems to be past all of that now, Thank goodness!
Currently Serena is in Arizona with her very dear friend Livia, they used to dance together at Supernova.
Happy New Year everyone!
Serena is doing well. She has been in remission for 6 years and counting :)) She is in the long term survivorship program. We go once a year to CHOP (Children's Hospital of Philadelphia) and see a variety of specialists. We still can't say that she is NED(no evidence of disease) or cancer free, because there are still spots that show up on scans. But that is ok, because she is doing great and we have every reason to think that she will continue to do well. She was on a growth hormone and it worked! She reached 5 feet in height. She is 16 now by the way. She decided to stop her growth hormone when she reached this height. Jeff and I support that decision. She is basically only on one medication- a low dose losartan to help with her kidneys, heart and slightly high blood pressure. She is still on Juiceplus supplements and Vitamin D to help keep her immune system strong and to help with her energy level. Considering all of the medications she has been on in the past, we are so grateful to be down to this small regimen.
Since we live in PA, we are so fortunate that Serena has been physically in school all year. She had the option to go virtual, hybrid or full time brick and mortar. She chose to be there all 5 days in person. Jeff and I completely support this choice. She had to do distance learning for a few months at the end of last year when everyone was quarantine and she had a really hard time with that. She got depressed and lethargic. She also had dance on zoom calls. This was tough as well, although we were grateful that at least she had that interaction with her dance friends online and had physical activity to help keep her spirits up. Serena was involved in the competition team for 4 years and covid cancelled all of the competitions for last year. :( They did have a recital in June of last year. It was a different type of recital to say the least! It was really cool! It was set up outside of the studio in the parking lot, and the studio owners Ms. Alexa and Mrs. Antonia set up a schedule to keep people social distanced as much as possible. They put a lot of thought and planning in to the event and my hats off to them! They made it work. I think not many dance studios still had a recital last year, so we were so grateful to have had ours. And this was a biggie for Serena, because she decided not to dance anymore. It was a tough decision, and I as a dance mom will miss it in so many ways. But I agree with her decision. She gained a lot from the experience of dancing all of these years. Her health benefited tremendously during her growing years. Her endocrinologist Dr. Mostafi-Moab was thrilled that she was dancing and doing weight bearing exercises as it was really good for bone health, etc. In fact, she gave Serena a hard time at our last appointment and wanted a definite plan on what type of exercise/activity she was going to do instead of dance. We are still working on that. One issue was that she hurt her ankle last year at dance, and had to sit out A LOT during practices. It was a real bugger to get healed. There were a LOT of physical therapy appointments involved and a lot of frustration on Serena's end. This definitely contributed to her deciding not to dance anymore. She was starting to get into skateboarding so that seemed like a good activity for her... until, she hurt her ankle AGAIN!!! back in the boot for a few more months. How aggravating. 2 times, same ankle, hairline fractures both times. Anyway, she seems to be past all of that now, Thank goodness!
Currently Serena is in Arizona with her very dear friend Livia, they used to dance together at Supernova.
Happy New Year everyone!
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