I feel like we are sitting in limbo… 2 weeks ago we set in motion a option for proton radiation in Boston. The proton therapy is not offered in Canada but it is allot better form of radiation, specifically for children.
Main advantages include :
– Up to 60% less radiation generally can be delivered to the normal tissues around the tumor, which lowers the risk of radiation damage to healthy tissues.
– It may allow for a higher radiation dose to the tumor, which increases the chances that all of the tumor cells in the tumor targeted by the proton radiation will be destroyed.
– It may result in fewer and less severe side effects such as low blood counts, fatigue, and nausea during and after treatment.
In addition to the proton therapy, Aiden would also be staying at the Spaulding Rehabilitation Hospital Boston which has been ranked in the top 5 rehabilitation centres in the US. On Friday, I chatted with “Lady A” who is helping to organize this treatment on and she also said he would be guaranteed a minimum of 3 hours a day physio/OT/Speach. After speaking with Lady A it sounded like the hospital has accepted Aiden by we are waiting to hear from the ministry for the funding approval which we should hear back Monday (today) or tommorow. When chatting with her on Friday she had said plan would be for Aiden to come down there 31st of October, get fitted and woudknstary treatment on November 14th. In the meantime they recommend starting a low dose of chemo to tie Aiden over till then. Ok that sounds great.
Here at Cheo on Friday they had told us we need to decided if we will do a year long Chemo treatment here or they gave us the option of a high dose 4 month chemotherapy using stem cells at Sick Kids in Torontos. We have been weighing the pros and cons endlessly. How do we make this decisions? They say the 4 month is a 3% higher success over the 1 year but really it is a personal choice of what is best for our family. We have been battling with these options since they told us and had finally agreed, after my talk with Boston, that with the better radiation and top rehibilitation program with Boston then for sure with the 4 month Aiden would be strong enough to handle the “intensity”. In the event that Boston was a no go we had asked they put in motion plan to go to Sick Kids for the whole treatment as it too is known for treatment on brain tumours and has a larger better equipped rehabilitation centre. It seemed like we finally had a game plan set.
Aiden fell back asleep this morning and I decided I would take 20 minutes and go over to the Ronald McDonald house and have a bath and revive myself. No sooner had I dipped my big toe in the water my phone rang. “Stephanie Verk, Aiden’s mom, are you close by? the physicians would like to chat.” So back over across the street I go. I am then told that after “Dr. Jons” conference in Europe on the weekend the recommendation is not to delay treatment. I am told if we wait untill the 14th there is a 20% decrease in survival odds. WHAT?! Obviously this is not an option. I ask what happens if I get him on a plan tommorow can they start early? They look at each other surprised… “well this would be an out of pocket expense, your air fair would not be covered.” Ok, I say, so find out today if we can start this week if we find out today/tommorow the funding for the rest of the treatment will be covered by the ministry and I can fly out on Wednesday.
We also discussed why we wanted this treatment over that offered here and I said that I feel like his strength would not be up to handle the condensed chemo. At which Dr Johns said that is not necessarily true, but it is not based on Aiden specifically. So we also left the meeting in agreeance that I would talk to the rehabilitation director here to hopefully put some of my worries on the quality of care Aiden has been receiving to rest.
So as I said we sit in limbo. I wish they did not give us any options. No matter what we choose, if it does not work out how do we ever get over it or ever stop blaming ourself. Time is running out and options are great and few….