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Sunday, October 17, 2010

Things have gone left....

Hello, there have been some pretty tough days we have been through and are coming. Mindy got a call on Thursday from Nurse Claire who beat around the bush until finally getting to the point that they needed Mindy and Landon Friday for another meeting as they found some new information on the MRI that changed everything...that "life wasn't fair"....Wow that was a punch in the gut!

So Friday came. Apparently the Radiation doctor, Dr.Patel, was not completely wanting to go with one opinion regarding Taylor's MRI. He contacted another doctor with a lot of experience to give a second opinion. He saw cancer ALL over the entire brain! WTF so again that was so radically different that Dr.Patel then got a third opinion. Third Radiologist saw the same. He had them go through why they saw what they saw, he said it made sense. He was still seeking a fourth opinion on Friday after we had the meeting. Basically at the meeting they told us that this changed everything as they now felt the hope was gone for prolonging her life a year or two with the radiation. We have always known that this was severe but we kept the hope that maybe, just maybe....So basically they told us that a decision regarding how we proceed had to be made there was no guarantee that it would do anything for her other than cause a loss of quality of life. Basically the time spent going to the cross for radiation every day for 6 weeks, the side effects during treatment and then after may lose time they have with Taylor for nothing. Then they said they could try Chemotherapy, wouldn't save, but may prolong, but we needed to wait to talk to Dr.Wilson regarding that as well as an experimental drug. Because the cancer is so rare, there are no answers, no other case studies to make judgements on. We are aiming in the dark here. The fourth radiologist said it was "inconclusive" so they will be doing another MRI on Tuesday.

So leaving this meeting was crap, just crap feelings. Its not over yet as more Doctor's will be consulted, options still need to be discussed and learned. But at this point Mindy and Landon feel like they are "cheating death" and there is no escape here. Needless to say it has been very, very hard. Not sure what will come next. Nurse Claire said to put in the "Make a Wish", go to Disney World, everything, soon. This could be quick as the cancer comes back faster and faster every time. We got 6 months the last time so it could be 3 months.

So I know that everyone wants to let Mindy and Landon know their sympathies. I recommend sending a card or something. They get overwhelmed with calls, texts, e-mails. Prayer pillows I have seen are pretty neat. You write your prayer down and then make a small pillow, decorating it and send to the family. I am going to think of some fundraisers to help them with the cash they are going to need. One idea is a "bottle Drive". If someone could head that up I would greatly appreciate it. I tend to get a bit overwhelmed as I work full-time as a teacher (I am a volleyball coach and always have work at night and weekends), have 2 young kids and am with Mindy and Landon a lot so I may not be the best "go-to person". Please if you have ANY ideas let me know.

If you want to donate Money to Taylor's trust fund I will post the information below again. or better I will see if I can add in the sidebar. It is in the sidebar just scroll down the page.

Again I will keep you posted. I delayed to give them some time to let this digest a bit. The road ahead is unknown. Send them your strength...I am praying, wishing, hoping that this is a nightmare we will soon wake up from...that they are wrong.

Sorry Their address is:
P.O Box 642
Alberta Beach, AB
T0E 0A0

street address:5220-49ave

2 comments:

Sondra Austin said...

Hello,
I have just stumbled across this family and it has really hit home. I have a son, he does not have cancer, but who has a brain condition that is quite rare. We no longer have any options for treatment, and are working on his quality of life. I would love to discuss our similar situation more, and hear about your fundraising. As this is something that we have been interested in trying... Just don't really know where to start. We also went through make a wish foundation for a trip to Disney world this July.
I and sure that out paths have crossed at some point as we have had many lengthlu stays at the stollery too :(
I can be reached at sondra_austin@hotmail.com Or 780-995-3838
thanks so much for your time.

Leah said...

Sondra I am sending an e-mail off to you. Please let me know. These fundraisers have largely been from some of the amazing folks we know that offer us their brilliance. I think the biggest thing is getting your story out there. Finding support and joy. We probably have crossed paths as when Taylor started I think we were at the stollery every week or two as chemo always caused some other great thing to be dealt with.