Life Off Treatment...So Far

Well things have been going very well since Catherine went off treatment. It has been great eating dinner at a normal hour and even being able to go out to dinner with friends and not be so anxious about what time she finished eating. Dave seems to think she has more energy already. I would attribute that more to the daily asthma medicine and her new found ability to breathe and sleep through the night without hacking up a lung (Alex has been sleeping better as well as her coughing woke him up). I have to admit that the fact that she is off treatment hasn't quite hit me yet. Dr. Joe today said it will hit me in a few weeks and then I'll become a nervous wreck.

Dave and I met with Dr. Joe today to discuss all that there is to discuss going forward. Here's a summary:
Given certain prognostic factors, he believes her cure rate falls into the 90+% range. He seems confident that she will be fine, but he is a doctor and he doesn't have that crystal ball that would let us know for sure how she'll be so she will be checked every month in the first year off treatment;

Because of the chemo, she has a 3% greater chance than the general population of getting cancer. The most common secondary cancer being melanoma (skin cancer);

Because of the intrathecal methotrexate (the chemo put directly into her spinal fluid), they are finding that many childhood cancer survivors are developing learning disabilities down the line. He wants me to schedule her neuropsychological testing this summer as a baseline for where her skills stand now. She will be monitored closely throughout her school years for any problems;

I have to set up an appointment with Yale's Heroes Cancer Clinic where she will be followed for the late term effects of chemo on children. It is here that she will undergo bone density testing (steroids are not kind to the bones) and heart testing (many drugs she took could affect her heart in the future), they will also teach us the tools needed to maximize her health potential;

Dr. Joe has seen a lot of infected ports lately, so he wants us to schedule an appointment with the pediatric surgical team at Yale to have it removed before the summer;

It will take about a year for her immune system to fully recover. During that time her counts will go all over the place, BUT if he sees all her counts dropping for no apparent reason (i.e. being sick) and she doesn't seem to be herself, he will do a bone marrow aspirate to check for relapse. Also in the first year, he wants us to call him first when she is sick and he will determine if we see him or the pediatrician;

They no longer do vaccination tests, apparently they were meaningless, instead she will restart her vaccinations where she left off starting next May (so she is about 2 years behind in her vaccinations);

The subject I dreaded discussing - Relapse! The rate of relapse is highest in the year before treatment ends (got through that) and in the in the year after treatment ends (let's see how much I age this year worrying about this). If she has an isolated relapse in the cerebral spinal fluid, she will go through 2 more years of chemo. If she has a relapse in her bone marrow within the next 2 years, she will need to have a bone marrow transplant;

They gave us a medical form to fill out and she needs to give it to all her doctors as she gets older and is on her own. This form will list all the drugs she has taken, the dose and the side effects. One drug in particular, doxorubicin, comes with a lifetime limit of what your body can handle. It is a commonly used drug for breast cancer, so she needs to be aware of this in the future;

Finally, and this one was from our oncology case manager at the insurance company, we must never ever let her insurance coverage lapse. She will likely be denied coverage if that ever happens.

Overall, it was a good meeting and he congratulated our family on getting through the hard part. I think he talked Dave into letting her go to his sleep away camp in August (Dr. Joe runs a camp for kids in CT who are being treated or have been treated for cancer). Catherine is old enough to go now and she really wants to do it. I think it'll be good for her and I know she will be in the best hands.

It will be an interesting year, but I know that it is in her best interest that we move on and try to live our lives to the fullest.