Sunday, April 8, 2018

March 29th MRI Results

Taylor's new favourite thing is journaling!

So Mindy and Landon had the results of the MRI on March 29th. Before that they were told that there was new growth to the tumour. They are unsure if the tumour stopped after radiation for a bit, or if it slowed down the growth. Basically the effects of radiation (RT)  last somewhere between 3 months, maybe 6 months. Because Taylor has been doing so great for the past 3 months they are already are happy with the results of radiation. There will be no other MRI unless she goes another 3 months with little or no change...basically if she continues to do well its a medical miracle and the RT has done more then expected.

What they are expecting is that we will start to see a decline in the next few weeks/months-the RT bought us more time than they predicted, but they predict it will start changing. They did recommend that they could do medication reduction, but Mindy and Landon don't want to make changes because it could potentially help with swelling and muscle tightness, but not a significant change. The risks though would be that she could start getting headaches and vomiting again, something that is not worth the change.

People keep offering suggestions, although well meaning, to try different things to help "cure" Taylor. I would ask people stop. We know people are very well meaning and its because they find it hard to wrap their minds around the fact that this can't be cured. There are at least 9-10 doctors that Taylors Doctors consult with, all specialists. They have no suggestions. Taylor's quality of life is the most important thing to us. We do not want to make her suffer through trials, etc. just trying to prolong her life. This would be no life. There are always side effects, and complications that go along with this. She was so absolutely miserable after her operation and radiation, that it would be beyond cruel to submit her to any of these sorts of just on the whim that it buys time. That may not be how you feel, but I would ask that we respect our families wishes.

It is a cruelty to assume that Mindy and Landon have not considered and weighed all of these options. It is beyond my understanding how they are having to make these calls. It is a nightmare. Only parents who have been forced to make these types of decisions can truly understand what this is like. I am not talking about an adult, we are talking about a beautiful 9 year old girl. I am not going to lie, I am furious that we are doing this again. We fought this battle. We fought with all our hearts, minds and souls. We won. This seems so unfair to be given this monster again.

Bald is Beautiful photoshoot by Claudine Lavoie

I have been so crazy busy, I am sorry it has taken me so long to get on here. The past month has been such a whirlwind. We have just had so many things shooting out at us to deal with. Mindy and Landon are so grateful for the sisters who have rented their home to them. It has been a huge adjustment living in Fort Saskatchewan. They are unsure at this point exactly when they will be able to go back home, hopefully June.

Hair Massacure was an absolutely amazing experience. Tammy MacDonald is like this tiny powerful angel who pours her special powers on making people feel like they are able to conquer anything. I was so appreciative of all the volunteers at the Hair Massacure. There is a special kind of magic in the air at this event. I hope next year everyone has an opportunity to go and experience the event as a volunteer, participant, or supporter. There are also these AWESOME photographers that capture the event, the fun, the beauty and the love. Thank you! It amazes me that this mother who had her daughter battling the MONSTER, organizes, fights, and advocates...and this event is the Hair Massacure. 

Sharon Taylor was so generous to share all of her beautiful shots with Mindy and Landon, as well as make Taylor a special towel to Taylor's specifications. For some reason I feel like I know Sharon. I don't know how, or why, but she is so familiar to me. Landon and Mindy were so shocked that she was willing to share all the shots she had of our group, all in professional level files for free. Then she went out of her way to offer Taylor these cute towels she creates/makes and when Taylor told her, "I like the top of this one, and the colour of that one." She went and made one specially for Taylor. What amazing kindness!

Claudine Lavoie we are so grateful for a "Bald is Beautiful" shoot. Some of the people that shave come in for a special photoshoot post Hair Massacure. What is truly amazing is these gorgeous and brave people, all who have special stories in dealing with the MONSTER, come and get these beautiful photos done to capture their strength and beauty. There was this beautiful mother with her daughter. The Mom is fighting cancer and her daughter shaved for her. There was this special love between them, and power. There was a Mom who has lost a daughter to cancer there, and she was with her two children: one shaved, one pinked. This family gives me hope that we can continue,  I did not know everyones story, but I wished I did.

There were just so many photographers that have also shared their original quality files to thank: Romy from Cheers (see below photos), and Jerry from Humans of Edmonton. If you have had a chance to look at the Hair Massacure Facebook page you will see all of these amazing photos!

Lorna Dancey Photography is a special friend who has done pre and post shoots also for Mindy, Landon and taylor. She has done family photos for them before, and as soon as Taylor's new prognosis happened she has been ongoing in trying to work with the family to get their family captured. Landon sent me the following ones that she took awhile ago and they tear my heart a bit

Thank you to everyone who came out to cheer us on!

Thank you to Taylor's school: Mr. Danzinger, Mrs. Reaney, the other kids who shaved or donated, the other staff (I am sorry I don't have everyone's name). Everyone has gone over and above. It is moments and gifts of kindness that renews my belief in the goodness of humanity.