Email # 9

Hi everyone,

I feel like I say this everytime, but it really has been a while since I last emailed an update.  I'd like everyone to know that though we do try to communicate what's happening, you are always welcome to ask us at any point as well.  We 100% do not mind talking about it, to anyone that is interested / curious about our situation.  The truth of the matter is, the first few months since the last update in February were uneventful.  We were also aware that we would be having appointments and test results coming up, and decided to wait until we had something to say...

 

SO...we were between appointments with Endocrinology and Opthamology, weekly treatments were going well, and we were anticipating MRI #7 - scheduled for May 2012. Well......the MRI got pushed back, and pushed back, and pushed back....for no other reason than scheduling - sometimes these things take time.  So we waited, and in the time before the MRI came we met with the other departments and got the all clear - things are looking really good with her hormones, and her vision is on track (but will be monitored closely).  However, when we finally had our MRI, the results were not quite what we had been hoping, nor what we had expected.  Paul and I definitely needed to take a bit of time to ourselves, which will also explain the delay in updates.  Please keep in mind, that though it has been two months since her MRI, and we are ok, this was probably the worst we had felt, and is the hardest Evie Update I have had to write since the very first one I sent out, almost 2 years ago. 

On July 10th Evie had her 7th MRI, and three days later we recieved the results.  As I sat in the very familiar conference room in the Blue Pod, I listened as one of our four Neuro-Oncologist's explained that Evie's tumour had grown, and was no longer being classified as stable (to explain: Evie's last two MRI's in Feb.'12 and Nov.'11 were "stable" - however upon closer examination, the team concluded that in a year long period, since Aug.'11, her tumour had still grown approximately 5% in mass.....which means that even though a small growth over a year long period, a growth none the less = not as "stable" as they thought).  What was just as upsetting was that the team had not yet come to a decision about what the results would mean for the future of Evie's treatment.  The following two Fridays Paul, Evelyn and I made our way to SickKids for our scheduled treatment appointments, but also to have meetings with the Doctors.  On July 27th we were told that Evie's scheduled chemo treatment that day would be her last for a little while.  The plan her team has come up with is as follows:

- As of July 27th, Evie has been on a 3 month hiatus from treatment. 
This means that we have not been going to the hospital each week, and aside from a routine Port Flush (simply cleaning out her port-a-cath line to ensure no infection) on September 7th, we are on this break until approximately November. 
- Evie will have her 8th MRI around the end of the 3 month hiatus. 
This has not yet been scheduled, but the plan is that it will be scheduled on time, sometime near the end of October...experience tells me that it will likely end up being sometime in November.  Either way, Evie will go back to SickKids on October 19th for another Port Flush.     
- Evie will begin a new chemotherapy protocol based on the results of her 8th MRI. 
There is no definite plan at the moment, but Paul and I have been told to prepare for a more toxic approach to Evie's treatment.  Whichever protocol is decided, we are likley looking at another year of treatments.  

 

When I spoke with her doctor last Friday (at he check up for Port Flush), he reassured me that they are not making any decisions just yet, and are looking into chemotherapy options for Evelyn. Upon his assessment of her that day, he said he is happy to see her progressing and meeting all of her milestones. She was a charmer, she spoke to him, sang songs and answered his questions, she showed him how she gives Mommy her needle, and even made him wait as she announced that she had to go pee.....all in all, it was a good check up.  We're currently half way through our "chemo break".  In all honesty, it was a big adjustment to make for us...not going every week.  That might sound crazy, but we have found comfort and reassurance in our weekly visits.  It is a part of our routine, and to be honest, Evie enjoys a lot about her days there.  Paul and I were concerned abou her memory + age = too quickly forgetting and as a result, not cooperating with the process.  We were wrong.  She was happy to go, happy to see some familiar faces, she made no fuss about her needle - she did great.  And now Evie has a new routine to keep her busy.....daycare!

 

The news of Evie's tumour growing (again), and then hearing that we were going to be taking her for treatments for at least another year, is what made everything so difficult for Paul and I. We really did expect better news. We really did feel blindsighted by what we had been told. The protocol explained to us is very different from what we are used to, and the timeline is essentially the same as what we had originally heard almost 2 years ago. It felt almost as if we had made no progress. It was a big slap in the face. But now that the dust has cleared, and we've had time to be upset, and time to re-evaluate, and time to think, we can once again see the bigger picture. Everything being done is being done in her best interest, and if something isnt working, well then we should stop and try something else, keep looking for something that will work. PLUS: Evie has been doing so well - and has changed a lot in the timeframe the doctors had been specifically looking at (Aug.'11 - now). She had started a new (somewhat experimental) protocol last September, and since then she started walking, talking, gaining/maintaining weight. She learned to talk, her hair has grown immensly currently hitting her shoulders in wispy blond curls. Today she is a typical 2 year old, running around, singing songs, demanding jelly beans (but she "no like the coffee ones"), brushing her teeth constantly, using the toilet, and always asking people if she can give them their needle (Ok, I know that's strange to most of you, but for a kid who get's a needle almost every week, it's pretty normal, and pretty cute). 

 

In other news, Isabelle has turned 8 and started third grade, and Paul is back to school for a few weeks as well!  Both are loving school and the routine it is providing....both have already complained to me about homework!

 

I will be sure to keep everyone updated as the next few weeks/months should be giving us some more insight into Evie's treatment. 

 

Take care, and lots of love,

 

Paul and Kristine

ps.  WE ALSO WANT TO SAY A BIG, HUGE THANK YOU TO EVIE'S TEAM!  To all of you who participated in Meagans Walk this past May, we thank you.  Our team grew from a mere 5 people, to well over 25, and we managed to raise well over $6,055.00!  More so, we were so honoured to have such a great group of friends and family walking with us, and not only supporting us, but all the other families with children with brain tumours.  I am proud to have been walking beside each of you this year, and proud to have been walking for Evie and Stella.  I hope that we can continue walking with each of you again next year.    Oh, and no, I have not got the picture of our team yet.......gah!