What Cancer Cannot Do

It has been a long few weeks for our family, especially for Mayleigh of course. We are doing another two week cycle of Cytarabine four days a week for 2 long weeks. This drug has caused havoc to her system and unfortunately it did again. It reduces her red blood cell counts, making her weak and extremely tired. It makes her more nauseous than other drugs and makes it very hard for her to eat. It also causes a fever... which is like walking a very fine tightrope since drug induced fever is not a huge deal but a fever from any other source (even just over 100.4) is an EMERGENCY since it could be life threatening. She had to go the ER again (where she is exposed to even more germs) just to make sure it isn't a bacterial fever. Thankfully it didn't grow out anything and we feel certain that this was again, a drug induced fever. We had to find articles about this drug and the fever side effects to ease her doctors mind as he wanted to consider a surgery to remove her port incase it was infected and insert a PICC line. Mayleigh stood up for herself to the doctor, reminding him that at the last exposure to Cytarabine ended with her in the hospital with the same exact symptoms with no found infection anywhere again. She wasn't about to "jump the gun" to remove her port just yet and I am proud of her for learning that it is OK to question her doctors. The doc agreed to wait until she was done with this drug cycle to see what happened. Sure enough within less than a day of stopping, her fevers went away. She did require another transfusion (which we all expected) resulting in some color coming back to her cheeks, she was hungry for one of Dad's amazing smoked steaks with a side of his golden potatoes and her spunky personality came back to. Mayleigh continues to prove what a strong young lady she is! While cancer has caused our family a lot of stress...we refuse to let it consume us with fear or anger. Instead we grow closer, love each other more, appreciate the small things and value what we do have... remission, optimism and faith! So cancer... you are limited!

Mayleigh may not fully realize how amazing her soul's growth is just yet, but just like this rock blocks the path leading to the light this seed needs to thrive; the seed didn't know that it would eventually break through the soil to feel sunrays that will allow it to grow! She has strong roots that we will continue to water... knowing that someday we will witness her flowering! Larry and I are so proud of her determination and willingness to keep doing everything required to continued kicking cancer's ass. It will take this strength as the next few weeks, months, years of her continued treatments aren't going to be easier. She now requires 18 intramuscular injections over the next two weeks, then again many times in the future (since she was allergic to the IV form of asparaginase). This doesn't count all the other chemo treatments to work around these injections. This protocol is difficult but has proven effective... so it's a good thing she has a strong and very stubborn spirit that will allow her roots to grow deeper while we wait till she can bloom!!

Lastly I would like to thank Mayleigh and Ian for their love and support towards Larry and I through this as well. She realizes that the burden of this treatment weighs heavy on us all and that as her mom (with health issues also); needs to recover for the added stresses in order to continue holding some of the weight. Larry and I had made reservations clear back in the spring to camp in September at one of our favorite places to be in the world...the Redwoods! We had never gotten to camp at Jedediah Smith State Park and while we struggled with the idea to go while Mayleigh wasn't feeling very well, she encouraged us to go. Ian was with Mayleigh and we were only a few hours away if needing to come back, so off we went. Thankfully we found some respite in the Redwood forest and I felt my strength come back just being there for a break. It is indescribable the peaceful serenity that Larry and I feel everytime we walk through the mystical groves of the Redwoods. It is impossible to capture the size and beauty of these trees. Redwoods survive through thousands of years by intertwining their roots so that when one tree is under stress, it can still survive through accepting the nutrients it needs from the other trees. Our family doing the same...growing roots to support each other so we can all survive and thrive!!

The "Step n' Slide" Effect

Ever climb a sand dune?? It is a series of stepping up just to slide down, step up more and slide again. Progress, but slow, hard progress. This feels like our lives right now...exhausting! Mayleigh and I went to see Dr Sharman in Eugene yesterday for labs, chemo and a talk about options since Mayleigh had such a bad allergic reaction to the last chemotherapy drug that landed her in the ER. He started with the good news first that we CAN work with our local oncologist to have 3 of the four treatments needed (during SOME of the consolidation therapy protocol) each week in our area. We were then informed that there is another drug substitute needed to replace the drug she's allergic to. It however, will require 6 treatment doses for every one dose of the drug she's allergic to and that this drug is EXTREMELY rare so we need to do infusions of it in Eugene. So, we are required to follow an INSANE protocol to treat her A.L.L cancer & add in an INSANE number of additional treatments due to allergy; then throw in traveling for more than 2 hours each way for most treatments...that's enough stress for anyone right? Then we add in that Dr. Sharman MD in Eugene is required to work with Dr. Latan MD up at OHSU in Portland...who is now required to work with Dr. Cook MD (local doc) in order to get the 3 out of 4 treatments locally (sounds great right??) but after hours of phone calls later to determine who is overseeing the insurance coverage/pre-authorizations, who is liable for the treatment at which location, who is in charge of making sure the orders for the Outpatient infusion center got the drugs needed and that the schedule for all doctors, clincs, rides, insurance pre-authorization and patient is ready in order for that all to happen? That's right...ME!

This ladys expression is how I'm feeling right now. As I continue to figure this all out, organize and argue with doctors, clinics, hospitals, insurance and making sure there are rides to and from each appointment...my heart aches thinking of anyone who doesn't have a feisty advocate (momma bear) to jump the hoops to ensure the treatment protocol is even being followed. Cancer patients who require this kind of treatments have enough to stress over and "chemo-brain" (as Mayleigh calls it) & should NOT have to do what the staff SHOULD be doing. That and it is they who also get paid good money from us and our insurance to do their job!! Being that I have a full time job as momma bear and a more than full time job running my company Framehuggers...along with a part time volunteer job as the VP of our diabetes association (while living/treating my own type one diabetes) and trying to move Mayleigh, Ian and 2 Chinilla's, 2 Guinea Pigs and a hedgehog into out home...well lets just say I may need some prayers for my sanity please :)

As we aim our arrow ultimately at our goal; we will have to accept that the slip in our steps is not setting us back; but is instead a force of energy behind every struggle that will propel us to hit that target dead center! I'd like to thank my incredible husband who has dedicated this entire last "holiday" weekend at the school district (as he's been the ONLY computer technician for the last 8+ years) working from early morning till after midnight, trying to play catch up on what should have been a relaxing 5 day break before school started. He had to transport and unbox new computers, update and or install software on every computer,install all smartboard & projectors, update websites (mine and schools), start training a new computer tech (yea but more work to train), educating himself to pass tests required to become a Google Certified Trainer so he can educate teachers....all this just to come home & hear my woes. He is my rock and helps me keep/find my sanity in his loving arms and listening ears (sorry I make your ears hurt). You hold me up Larry Workman (along with an entier school district) and you should get Man of the Year award in my book!!!