Another Update

Since I last posted we have received more crappy news…

I started the immunotherapy which Dr. Perry seemed so positive about. Steve’s health insurance is covering most of the cost of this very expensive medication. An amazing organization, The Ryan Saturno Patient Amentities Fund, stepped up to help with the rest. The immunotherapy is received through an IV at a private clinic in Cambridge and takes about an hour every two weeks.

After 6 rounds of immunotherapy I had an MRI, and we were once again devastated with the results. The treatment was working on the large front tumour and keeping it contained, however, there was significant growth (25% bigger) in the tumour at the back of my brain. It was beginning to put pressure on my spinal cord. This is very serious as paralysis from C1 downwards will begin to set in as this grows and the spinal cord is compressed.

So, treatment on that tumour was needed.

Radiation was the only option, as this spot was not responding to any chemo or the immunotherapy. So, on January 24th I started another course of radiation, this time to this spot which is wrapping my spinal cord. This time, instead of driving daily into Toronto, we have rented an apartment. It was extremely difficult in 2015 doing the daily drive into the city, and we couldn’t imagine doing it with Aubrey now. We have a lovely basement apartment just 8 minutes from the hospital.

I go every day (Monday – Friday) for 5 1/2 weeks.I am about halfway through the radiation now. I am very tired and have horrible headaches. Recently, I have been having some issues with my feet and hands. It feels like there is a bunched up sock under the ball of my left foot. It is not painful, but very uncomfortable and this “sock” moves. I had a lot of trouble walking Monday as the area grew and I was only comfortably able to walk on my heel. My radiation oncologist isn’t sure what to think….it could be swelling around the tumour which is causing some paralysis, but it would be VERY fast to have this happen and the fact that it is rather sporadic doesn’t make sense. My hands are different, they do go numb (like pins and needles) from time to time. I think this is very much linked to the amount of time I spend feeding and carrying Aubrey though. I can feel a nerve in my elbow being pinched the longer I carry her. Trying to figure out something to help … and I am trying to switch up which way I carry her to divide up the pressure.

Steve and my Mom have been AMAZING (my Mom stays with us in Toronto) and they are doing so so so much to help Aubrey and me. Aubrey keeps us smiling, and has the very best laugh ever! She is getting so big and learning new things every day! She knows that something isn’t right, and it breaks my heart. She doesn’t like seeing me in bed, so she sure is my motivation to get up! Steve’s parents have also been very helpful and have had Aubrey with them a few nights so that my Mom can get a break. We do go back to Guelph most weekends and usually have our amazing friend, Vanessa, stay and help out. Thank you all so much!

I am not yet sure when my next MRI will be, but will certainly post an update. PLEASE keep sending those prayers and positive wishes.

Love to all!

It’s been awhile . . .

It’s been a long time since I last posted but, now an update is needed (long overdue actually). 2016 had been a great year up until two weeks ago…

I returned to work and loved it!

I gave birth to a beautiful baby girl, 6 weeks ago, Aubrey

Things were really looking up, and then I had my regular 3 month check up scan and that all changed.

I wasn’t expecting anything to come of it as I was attributing all of my headaches to being pregnant and then not sleeping great since Aubrey’s birth. Unfortunately, that was not the case.

The scan showed a significant new growth behind my right eye. It appeared to be growing from the skull bone inwards and pushing into the area of my original tumour. It had Dr. Perry and his team totally stumped and we left with no idea what was going on or with a plan. Needless to say the waiting has been hell! 

We were back to see Dr. Perry last week after he was able to arrange a meeting with many of the top neuro-docs in North America. None of them had seen anything like this happen with an Oligodendroglioma. These tumours are typically very slow growing and no one can figure out how such a large tumour appeared in such a short period of time. There is absolutely no trace of it on my May scan, even when specifically looking for it. The larger team also discovered two additional tumours at the base of my skull on my spine. (I am having a full spine MRI done tomorrow to see if there are any more tumours there) So, more heart-crushing news.

At least last week we left with a treatment plan. As I have already gone through all chemo regimes for my tumour type and we can’t re-radiate the brain again, so this time we are going to be trying immunotherapy. I don’t know much about it at this point, but Dr. Perry seems hopeful that it will control the growth for “awhile”. He is also going to investigate any clinical trials and/or additional treatments that may be available in the States. The immunotherapy is given at private infusion centers, and of course the province doesn’t cover it. The hospital is helping me get funding and find a center close to Guelph where I can receive it. It is given intravenously, similar to chemo.

We are all in total shock! We are totally heart broken and just trying to get through each hour right now. 2016 was the year things were finally looking up for us.

Nothing else yet as we are all still numb….

Thank you for your prayers, best wishes, and support.

Great News Today!

Great news today!

The tumour is stable and is the exact same as it was 3 months ago (very small). Feeling better than I did three months ago and continue to get stronger and get my energy back. With this good news today I will be returning to work next week as event coordinator. Very excited about these steps forward and some good news for the first time in a few weeks.

Thank you all for your love, support, prayers, and positive energy!

Xoxo

Happy New Year!

Hello All,

Hope you had a great Christmas and New Years with friends and family.

We have had a very challenging two weeks for those who haven’t heard. While away on a pre-Christmas vacation in Florida, my Nana (Mom’s Mom) was placed in hospice. Steve and I had a great visit with her on Dec 22, however the morning of Dec 23 we got a call that things were not good. The whole family spent the day at hospice and she passed away that evening. Meanwhile, my Dad got a call that his mom was not well, the doctor anticipated that she had a couple days left, however, overnight of December 23-24 she passed away in her sleep. So needless to say this Christmas and New Years has been very difficult and very different. I miss them both so much already.

We have had two funerals in the past week. Yesterday, after returning from Nana’s burial my Dad got a call that his cousin, very good friend, and biking buddy passed away. We are in total shock, and just trying to put one foot in front of the other at this point.

On top of that I had a scan last night. I will find out the results on Friday and am (obviously) hoping for no change. I am just so scared after we have had all of these horrible events happen in such a short period. I don’t mean to complain, just wanted to update everyone on what has been going on.

I will post an update as soon as I can Friday.

Thank you for all of your support, love, and prayers.

April 13, 2013 – Nana and I on left, Grandma and I on right

 

 

Great Article about my awesome Cancer Centre and a new procedure that might help me one day

Very interesting read. I hope this turns out to be a breakthrough!

http://www.theglobeandmail.com/life/health-and-fitness/health/sunnybrook-doctor-first-to-perform-blood-brain-barrier-procedure-using-focused-ultrasound-waves/article27171384/?click=sf_globefb

No More Chemo

No more chemo!!!!!

My scan today showed continued improvement in the shrinkage of the tumour and Dr. Perry, Steve, and I decided it best to stop chemo. He assured us that the studies have shown that two rounds of PCV chemo have the same long term positive results that three or four rounds do. Most people (90% in the two recent studies) only do two rounds as it is so hard on the blood system (which I was really struggling with). He is also writing an appeal letter to the ministry to get my licence re-instated, as I am 7 months seizure free, and dare I say it…. in stable condition.

Thank you all for your love, support, prayers, and positive energy.

xoxo

Here we go again!

Well after a very lengthly delay due to dangerous blood levels and a mystery infection I am restarting chemo (the shitty ancient one, not Temodal, which I get through just fine). Not thrilled, but happy that I am healthy enough to do another round. The oncologist has lowered the dose, so hopefully it doesn’t hit me as hard this time and I don’t end up in hospital 3 times (GRRRRRRR). We really wanted to talk to my oncologist about changing treatments but he seems very confident this is the route to go. I will have a MRI after this cycle to see what is going on. Until Monday I will enjoy my delicious wine and aged cheese 😉

Have a great weekend everyone! I indeed to enjoy it to the fullest!

xoxox

Another Quick Update

Hey Friends,

I have been getting lots of texts and messages asking how I have been doing (which I LOVE and APPRECIATE)! So I wanted to update everyone. I have been going for bloodwork every three days since my blood levels dropped off about two weeks ago. My platelets have recovered to healthy levels, however my white and red blood counts have dropped significantly to “critical” levels. There really isn’t anything they can do at this point… 1) wait till they drop more and I have a transfusion (which I am pretty close to) 2) wait till I get sick and need antibiotics and a transfusion or 3) let them return to healthy levels on their own (which we hope happens soon). I was due to re-start chemo this weekend but that obviously isn’t happening. In the mean time I am staying as healthy as I can and hoping for the best.

Thank you all for your love and support!

A Challenging Week

Hi Friends!

Hope you are all having an awesome summer! Ours started out really great, with the amazing news of my tumour shrinking, but this past week things have turned into a bit of a challenge for me. This has been the most physically demanding week since getting sick, and for the first time I actually feel like a “sick” person. I finished my first cycle of this new chemo almost 3 weeks ago and since last week my blood levels have been dropping very quickly. My white and red blood counts are low, but most concerning is my VERY low platelet counts. I have had uncontrollable bleeding and bruising all over my body for the past few days. Today my family doctor wanted to give me a blood transfusion, but the emergency doctor would not do one without the “sign-off” of my oncologist. I am very, very tired and have next to no energy, but will just take it very easy. Steve has me on a very healthy diet aimed to boost my blood counts. Next week I will have more testing to see if I need a transfusion or if things are coming back on their own. Man, o man though this chemo is kicking my ass! Hope that means it is doing its job! Thanks for your support. Have a wonderful weekend!

xoxo

In case you haven’t heard already…

I am getting a paper written about me! Never has my doctor seen anyone respond so well to radiation. My tumour went from almost a quarter of my brain to only a few very small clumps in the middle. UNREAL!! I am starting a new type of chemo to try and go after those cells (as they are resistant to Temodal at this point). This chemo will be 4 – 6 week long cycles, also done at home. One downside – can’t drink and can’t eat certain foods on new chemo BUT we can’t let that overshadow the AMAZING news we got yesterday. Thank you all for your support, love, prayers, and encouragement.