March for Babies

Sunday, May 26, 2013

After Care

Amanda finished her cancer treatments in February of 2009. She had gone through nine months of chemo, both inpatient and outpatient, as well as major surgery to have the tumor removed along with her gall bladder and half of her liver. There were also the "lesser" surgeries to do the biopsy, port placement and also port removal. Through it all, my kid was her amazing resilient self and captured the hearts of the oncology team as well as blog readers around the world who followed her journey back to health. 
Since then, we have been returning to the oncology clinic for check ups which have included CT scans (under sedation), chest X-Rays, blood work and general exams. There have also been audiograms looking for any signs of hearing loss and echocardiograms, checking for decreased heart function. These could both be considered long-term side effects of certain chemo drugs she received during treatment. This past week we returned again to the clinic for a full battery of testing which my girl passed with flying colors!
The blood work showed the cancer marker is negative. The x-Rays were clear (Amanda was diagnosed at Stage IV since the cancer had already metastasized in her lungs and that would be most likely where the cancer would come back if it were to recur). The echocardiogram showed her heart function is just fine but, when the time comes in the future that she may become pregnant, she will require an echo in both the first and third trimesters to ensure her heart is sustaining the extra strain that pregnancy can produce. As far as fertility is concerned, she should not face any decrease in her fertility nor is she at an increased risk for producing birth defects due to the treatments she received. This was good news coming from my own fertility challenged background. 
The audiograms had been done regularly during treatment and spaced out more post treatment due to the fact that we were participating in a study of kids who had received a certain chemo drug which can cause damage to hearing in the higher frequency ranges. They warned us about that at the time and asked if we would allow them to use her data in their study. We knew going in that down the road she could develop some hearing loss and might end up with hearing aids due to this particular drug. Of course just like in the NICU, you treat the patient to keep them alive now and worry about those pesky side effects like blindness or deafness, or the possibility of cancer later*. We happen to have lucked out on two of those three fronts. They see absolutely no loss of hearing even in the higher frequencies and both ears are equally balanced in their abilities. They said if she hasn't had a loss of function yet, it will not happen now, at least not from the drugs she received. They said she is actually remarkable in this aspect since it is quite rare for a kid having been treated for Hepatoblastoma to come away without hearing loss. 
So, here we are with a seven year old cancer survivor who will now be seen in the After Care Clinic once each year where they will compile a packet of information for her to deliver to her adult primary care physician when she graduates high school and leaves her pediatrician (who is copied in on all the NICU and Oncology info). They are setting her up for life after cancer. 
She is cured. She is now no more at risk for any type of cancer than anyone else in the general population. So, the prescription is the same for her as it is for the rest of us. Plenty of exercise, good healthy foods, time out of doors but wear sunblock to avoid melanoma, stay away from smoking and excessive drinking, etc. In other words, live a healthy and active lifestyle, :0) We are doing our best to model that for her and making strides in eating better, more whole foods instead of processed "convenience foods". We are getting outside, she is riding her bike, we are looking into getting Tim a bike so we can all go ride together. We tried to get her to run with us, she wasn't so into the track at the Y but maybe at the park this summer. 
Life is hectic and stressful at times but good. Our girl is about to graduate from Kindergarten. She is a wonderful reader and has recently fallen in love with the game of chess! Her occupational therapist, who is helping her with her handwriting and fine motor skills, keeps telling me how smart she is which is good to hear! Her neuro-psych exam this spring showed the places where she was showing deficits before have been made up and she is testing above normal for kindergarten but not necessarily for an average seven-year-old. So, we made the right choice having her attend Young 5s last year to get that good base under her before sending her on to higher grade level learning. She is fitting in well socially with the kids in her class and as long as they can continue to challenge her academically, I think she's in the right place.
Meow is more lumpy in some places, squashed flat in others, and quite threadbare in spots, but still her favorite best friend who sleeps on her pillow, or across her shoulder every night. He continues to calm her when she is scared or sad. What a blessing he has been to her, and us. 

*This year we participated in another study specific to Hepatoblastoma. They looked at everything from the drugs I took in trying to get pregnant to the lifestyle we lead before, during and after pregnancy. They looked at the treatments she received in the NICU. Whatever they could think of that might be associated to a diagnosis. The cases of Helatoblastoma have more than doubled in the last twenty years and they wanted to see if they could figure out why. This felt like a Pandora's Box to me. In order to answer their questions and find the answer in order to hopefully prevent more cases in the future, I had to examine what I had done in the past which may have contributed to her cancer. 
I was concerned about the fertility drugs I had taken and also the bowel obstructions she had due to her sensitivity to the fortifier they added to my milk when feeding her in the NICU.  What if it was MY fault she developed cancer? How could I ever make that up to her? 
As it turns out, they do not believe there is a relationship to the fertility drugs. They are leaning now towards the TPN (nutrition through an IV ) she received before she was able to "eat" (She was tube fed long before she was taught how to suck/swallow/breathe). It may be that babies with low birth weight, most likely premature, would have immature liver cells which are unable to process toxins properly. Now, you have to feed the kid something or the baby will starve. So now they can look at what is in the TPN to see if they can change the make up of it so that the immature livers are able to process it without becoming cancerous. Sounds easy on paper. Probably not so easy in practice. In the meantime, they need to continue feeding the babies in the NICU now, so they can live... 
Lather, Rinse, Repeat. 
The good news is, they know how to save the kids from prematurity and from this particular cancer,  so the work now is on preventing BOTH!!!
We continue to support research in any way that we can. We contribute to both the March of Dimes and Make-A-Wish. We are working towards living a normal life like a normal family ...after the NICU ...and pediatric cancer.  
After care.