Hello MB Friends,
Another successful follow-up appointment! 2 ½ years of remission! Jana will go back in 6 months again and then only yearly after that. We have been blessed indeed!! We are grateful to our MB friends here that have supported us throughout our journey--what a ride it has been!
It was a looooong day of tests some of which are not necessarily enjoyable. But, Jana was a trooper as always. She was especially excited about meeting her favorite nurse, Laura, for a late lunch. What a support Laura has been to us—what a blessing. We left home at 7:30 am and got home at 8 pm...exhausting.
Jana is not very happy with us though, because we are pursuing some cognitive testing for her and discussed this at length with the oncologist during her appointment. Unfortunately, it is difficult to put 7 months of major poison into a developing body and not have any lasting side effects. (Especially when it is mega- high dose with some injected directly into the spinal fluid.) For a child who scored in the gifted range prior to cancer—it is really tough to accept that there are some cognitive links that have not recovered and probably won’t. It really stinks! The oncologist has connected us with a pediatric specialist who is an expert in this field and we will be pursuing some assessments and possible interventions. Recent studies have shown some moderate success with cognitive training and meds. that assist with some memory and critical thinking skills for post-chemo kids.
Jana just wants to be a normal teenager and who can blame her?? But, if we can do some things to help make her life and learning easier—we feel it would be less stressful and less exhausting for her. We believe that with time, Jana will attack this issue with the same determination and strength that she relied on during her treatments!
In the meantime...13 days until CSS. I can hardly believe it!!!! I am getting nervous...going someplace different after our 2 trips to CSA...Jana staying home with Papa...being “out of touch” while Holly and Emily are at college, etc. BUT, I know that Russ and I desperately need to and want to get away for our couple time to renew the love and strength that has carried us through these difficult times.
Couples here we come!!!!