Bears are in the Woods

Just trying to write words to share with others since our last post, has been incredibly difficult and overwhelming to say the least. It is impossible to put into words the emotions we are feeling as the news from doctors leaves more questions than answers. As we all celebrated our last good news of remission status...the ugly shadows of cancer still linger in the dark trying to sneak out and block the sunlight shining on us. It is confusing as we are told Mayleigh is technically in remission if we only go off of the testing that has been used for many years. However, there is a new test available within just the last few months that were ran and in this test they found some residual cells that couldn't be found without this special new testing. As many of you know from my writing, I love analogies to describe my feelings and this time the doctor gave us a perfect analogy to help us understand the conflicting lab results. The doctor explained it like this... current testing is like someone handing you a small flashing to shine through complete darkness and being asked to find bears in the woods at night. You shine it all around and you don't see any bears so you feel safe. The new testing is like someone then handing you a huge bright lantern. You look around and see bears ARE in the woods...ya just couldn't see them with the flash light. So the "lantern" of her test is showing 5 out of a million cells are leukemia cells. So while we are "in remission"  with the flashlight and maybe safe from "the bears" that lingered in the woods (due to chemotherapy treatments) these bears can and will likely attack sometime in the future  unless we try killing them all and try moving to a new campground. Thus we were sent to the bone marrow transplant specialist at OHSU for discussion of what to do with these damn bears.

In late May, Mayleigh had a consultation with the OHSU doctors to discuss what to do with the new test results. Without the brighter lantern that found the residual leukemia cells; we'd just be celebrating a little more relaxed and continue maintenance therapy. While were are grateful to have newer tests that may help us determine the best long term outcome, it also creates a whole lot of questions with little answers. What to do with this information from the new testing is the question. There isn't a lot of statistics to go off of since this test is so new. T-cell leukemia is a very aggressive form of leukemia.... those 5 cells COULD do a lot of damage quickly if they stop reacting to the chemotherapy. She is still in remission but she has to be in order to have a stem cell transplant. If we wanted to wait this out and only keep giving her chemo treatments....there is about a 65% chance of the cancer coming back sometime in the future and if that occurred, the chemo would be less effective. If she couldn't get back into a remission again; we'd NOT be able to have a transplant. However, there are a LOT of risks to do a transplant but also a lot of reward. So it leaves a lot of questions as she could have a 5, 10, 15, 20+ year in remission without those few cells causing any issue but we would alway have that nagging knowing that "the damn bears are still living in Mayleigh's campground". So, do you take the risks associated with transplant right now which could save her life in the long run... but put her life at risk immediately or do you try to enjoy the remission status as long as you can and hope she'd be in the 35% that can live a very long life without these residual cells coming back? No one can tell us what is best and ultimately it isn't up to us; it is up to Mayleigh. Fear can set into each of us differently. What anyone would chose to do if given this difficult decision may vary since it feels like flipping a coin. Mayleigh however, is one of the most fearless and incredibly strong young ladies you may ever know in your lifetime. Without hesitation, she is ready to kill the bears and create a new campground within her body, so she doesn't have to fear them as much in the future.


For our extended families, friends and ourselves as her parents; we may at times let panic and fear fester as we question the right path....ultimately our thoughts and opinions don't matter. We ALL will love and support Mayleigh's choice 100% and I couldn't be prouder of her strength and her continued determination to continue fighting. She gives me strength knowing that she is the most stubborn and determined young lady I have ever know. Once her mind is set...she doesn't EVER waiver. Bit of honesty...this can also drive me crazy as her mom if I want her to be flexible and open to discuss other life choices (outside of cancer that is) but for this treatment...I am very happy that her stubborn side isn't allowing for any wishy-washy mindset and this is why she will beat this! As a loved one looking in, it is incredibly hard since we have no control over what happens. As a parent to a young adult, it is overwhelming to let go of what we cannot control. Every parent has fear of the mindset of their own young adult children and the choices they have to make to have a bright future. We have all looked back on choices we made at 21 and feel grateful that while some choices were dumb, we survived and learned from them. However no child/young adult should have to make a life choice like this. No parent should have to watch their child go through a year of hell, only to find out that all the efforts weren't working well enough. So.all we can do is to let go of trying to control something that is out of our hands and continue loving her, supporting her, holding onto faith... with hope to grow spiritually and physically stronger. That this in the end this is not all for not; but for something greater to learn from the struggles we faced and continue to grow closer, stronger and better despite it all.

Mayleigh was able to take a great break in her tough chemotherapy regimens, as we have finally been able to move onto the maintenance phase of her treatment. This allows for many pills to be taken during the day but only one chemo treatment that had to be done in clinic. Her amazing grandma Marie Hawkins (Larry's mom) has been a great support to us from the first report of her diagnosis and throughout this last year. She's paid for hotel rooms and sent presents and of course lots of love. It has been hard on her to be 9+ hours away from us not knowing how to help. So when Mayleigh had her consultation for OHSU; Grandma Marie took time off her work as a Physician's Assistant to be there. She then gave Mayleigh many days of fun in Portland before heading to Boise, Idaho with her. Mayleigh was able to spend 3 weeks there getting spoiled everyday....THANK YOU Grandma Marie...we all are grateful for everything you did!!! We know this has been tough so we couldn't be happier that you got to spend much needed time with your granddaughter. We love you <3

HEART FOR HER NEW HENNA  HEAD TATTOO ;)

My mom was also able to take her to see my family in Utah for a few days; THANK YOU Grandma Shelley! Mayleigh got to go to a farm to pet animals (one of her favorites) and to go to Lagoon amusement park (thanks aunt Richele)! She of course bravely rode every scary ride there and had a blast! While there, she got a henna tattoo on her head and a young lady (who didn't even know Mayleigh) insisted on paying for the cool henna art now displayed on her head. It was very sweet and touching for Mayleigh. She'd wanted to get a henna for a while and love even from strangers is amazing!

THANK YOU also to aunts and uncles: Richele & Lori & Martin, Glen & Trisha....and her cousins Megan, Carson, Matthew, Zachary and Tessica. It means a lot to see Mayleigh have such a great time! We didn't even hear from her much the whole trip because she was likely sick of us old folk parents lol; that and she was having too great a time! It was hard for her to be away from her fiance Ian so thank you to him also for being supportive and working while Mayleigh spent a few weeks having fun with our families.

You all did a lot for Mayleigh. Wished that Larry and I could have taken 3 weeks to play...dang bills gotta get paid. It was hard to be away from Mayleigh on Mother's Day this year....but as her mom I couldn't have wanted anything more than for her to be having a fun time and I got what I wanted!! Lastly I would love to share the something that Mayleigh wrote.

Cancer sucks ass
BUT

it has taught me inner strength and to take nothing for granted

My mouth tastes gross during high levels of chemo and radiation
BUT
I'm lucky to not have mouth sores and extreme nausea

My stomach hurts A LOT
BUT
I have access to an understanding doctor and pain controlling medications.

I have neuropathy caused by chemo
BUT
I can manage it with little side effects thanks to modern medicine

I am tired all the time and require a lot of sleep
BUT
I have loving parents and a fiance who take care of most of my needs and let me sleep when I need it

I don't receive very much disability money
BUT
My parents generously let me and my fiance live with them in their large accommodating house for very little. And I did not have to prove/ fight the government on whether I actually had a disability.

The steroids make me feel like crap and have high blood sugars
BUT
They are a vital part of killing leukemia and they help keep my blood counts up

After 8 months of chemo and 12 doses of radiation I may still need a bone marrow transplant
BUT
The outcome of said transplant in my favor for being a primary European decent, young, female

The amount of money and time in the hospital is outrageous!
BUT
I have double coverage insurance so I don't have to worries about most medical expenses

People pity me when I say I have cancer
BUT
It means they will be sending positive thoughts my way which is only a good thing

Cancer is fxxking hard!
BUT
I always say “But hey! At Least I'm still alive and fighting!”

And now you all can see and know why I am so proud....an attitude of gratitude is something I have always tried to instill in her heart. Even as she is going through so much....there it is; GRATITUDE!!

Please continue to keep Mayleigh and our family in your hearts and prayers. We are very grateful to have the support. We'll have some tough roads ahead but knowing others care does ease some of the burdens we have at this time. Thank you all for reading and caring!!