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.

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5 Comments (+add yours?)

  1. Wendy Cudmore
    Oct 11, 2016 @ 19:57:10

    Let’s start with the fun stuff…..A BABY!!!! Oh my gosh!! Congratulations!!! What an amazing gift for you and your husband!! I’m sure she is beautiful!!!! After all you’ve been through….to have a new baby to focus on and love….truly truly amazing and a gift so well deserved!
    Now….about this dam tumor…..to simply say WTF just doesn’t seem close to the emotion or express it properly but….for the sake of a public audience here….I’ll stick with it WTF!!!!! Maybe I should just write it a few more times for impact.
    WTF
    WTF
    WTF????????????????????
    I’m at a loss for what to say. I’m angry, I’m heartbroken for you but I’m also fired up and I hope you are too. I can only imagine how it must have felt to hear those words again after all that you’ve been through and for how long you’ve been doing so well. It must seem like a daunting task you’re facing right now. But the difference is now you have that magical daughter and when you had her you were granted rights into this group called “Super Moms”….yes it is a thing….really….just ask your mom! By being part of the Super Mom group you become even more driven, more tireless, more determined to conquer the world and, in this case…..this dam tumor.

    In all seriousness though….. I’m beyond sorry that this is happening but I also want you to know that I believe in you. I know you don’t know me (I’m a friend of Marisa Phillips who is a friend of your moms 🙂 ) but I do know your story and I do know how hard you can fight.

    Thank you, as always, for writing.
    Wendy
    ps…..I just re-read this and I hope you take it in the manner I intended. I was hoping to make you smile but also realize you have many out here in cyber land cheering for you. 🙂

    Reply

  2. Sue Fitz
    Oct 11, 2016 @ 20:43:46

    So much pride & joy in little Aubrey – lots of love too. Hoping it helps to ease your worries of the next while. Warm hugs!

    Reply

  3. Pamela Rnnie
    Oct 11, 2016 @ 20:54:36

    .. the recurrence of the tumor is a shock … you have your healthy daughter Aubrey to love and a very supportive husband … and top doctors who will help you in every way …as always you are in our thoughts and prayers … be strong … be well .. Pam Rennie

    Reply

  4. Cathy Novosad
    Oct 14, 2016 @ 08:41:17

    Hi Lynsey,
    Congratulations for Aubrey! Love her name! Your parents must be ecstatic. We are enjoying a third grand girl. They grow and change so much!
    We have a friend who lives in Guelph who is undergoing immunotherapy. She has to fly to San Francisco for the treatments. Let me know if you want to link up with her for info. She used to work at UofG so your dad may know her. She is a very kind and gentle person who tried to get OHIP coverage and even wrote to her MPP. I also told her about a cousin in BC who is getting immunotherapy paid for by BC. I gave her the name of the oncologist in BC who is doing the treatments. Let me know if you want the same info.
    My thoughts and positive vibes are flowing your way.
    Cathy and Dennis

    Reply

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