One of the main reasons for this is due to Mayleigh's positive attitude and her ability to only allow for one outcome and that is to rid herself of cancer. Every step of this process has made her stronger and even though she has been given progressively worse news at times, she continues to brush it off and only focus on what she has to do to get out of her four walled world.
Yesterday we were finally able to meet the "Wizard of Oz" the "Man Behind The Mask" the leukemia expert Dr. Brandon Hayes-Latten. He was extremely generous offering nearly 40 minutes of his time to discuss all our questions and concerns for Mayleigh's treatment from this point forward.
He started at the beginning explaining the disease in full details and how her t-cells basically stopped functioning properly and decided to mutate against her causing masses of these cells (tumors) to begin growing in her lymph nodes. He also mentioned this being the reason it hid itself so well from other doctors and not presenting itself more clearly.
He also spoke about her closing in on the end of the 30 day induction phase (Mayleigh refers to this as the hostage situation) and explained to us what was to happen within the next week or 2.
On Thursday Mayleigh will receive another Pet Scan. This will show how much the tumors have shrunk as well as how much "shine" is left from any cancerous activity in her bone marrow and other lymph nodes. On Friday she will receive another bone marrow aspiration under sedation. This will also be her last day of prednisone which she continues to take at 140mg a day. Her blood sugars have been fluctuating from mid 50's to high 200's but this doesn't seem to concern them to badly and should disappear after stopping the prednisone. We were hoping for them to take her off prednisone tomorrow so that we can see her reaction to this large dose disappearing from her regimen but today they informed us they would continue until Friday. Regardless we will not receive the results from these tests until the following week.
She will also receive another chemo treatment in her ommya port immediately after the aspiration and this will conclude her treatment for the induction phase. She will then be released Saturday morning and after 40+ days will get to sleep in her own bed! :D.
Her next phase is called consolidation and will require trips to Eugene 3-4 times a week for 8 weeks. Her treatments will be somewhat different than what she has been receiving currently so we are told there may be new side effects as well.
After this phase is complete she will require maintenance treatments for the next year and a half which will also require trips to Eugene but not as frequent. There are always constant risks of infections and fevers which may introduce additional hospital times but he reassured us that kids at this age fair pretty well with this regimen but we will need to take extra precautions as she becomes
neutropenic and her levels begin to drop.
Overall he continued to give us confidence that her lack of symptoms and side effects were nothing but positive news and therefore we are trying to remain optimistic that she will receive news that she is in remission. It's very hard to leave the hospital without even knowing what this treatment has actually done for her. At this point we have been buying time and trying to keep our minds off these speculations and just focusing on nothing but positive results. Of course your mind wanders from time to time and even considers the possibilities that we may not receive the news we want but I can't help but think we most definitely will have good news and our lives will be back on track.
She has also been allowed to go down to the 9th floor where she can enjoy some outdoor scenery and fresh air. This was the first time she has been allowed outside in over 2 weeks. Her Grandma Marie was also in town to visit her so she was able to have some new company vs boring mom and dad.
Through all of this experience there is one piece of the puzzle that has held it all together on an emotional front for all of us. Who's made our financial situation and obstacles much easier by being an amazingly strong woman, an exemplary role model, and a mobile entrepreneur that has sacrificed many hours sewing heastraps and eye patches, paying our bills, coordinating dog feedings for our boys still at home and at the same time managing to take care of her own health and dealing with type 1 diabetes every step of the way. This person is my wife, and Mayleigh's mother: Camille Workman
Camille has spent several days having to sew instead of coming up to see Mayleigh and I know this has been difficult as she wants nothing more than to be able to spend time with her. But to be able to transport Framehuggers to the Ronald McDonald house has been priceless for us and for her to sacrifice her time to continue to provide for us is beyond words and I know Mayleigh and I both appreciate this more than she will ever know.
She has also had profound results from vegetable juicing & nutrition and being without her juicer and blender for smoothies has been extremely difficult to manage. Thankfully Portland has several juice bars but at an extremely high cost compared to doing it yourself. Thankfully the flare ups have been minimal and she has done amazingly well considering we are beyond stressed and way outside our element.
Through it all she has stayed in tact. She has managed to avoid bursting, popping, exploding and falling. She has been keeping us afloat and allowing us to drift to the finish line unscathed. If you haven't figured it out already, Camille is also our bubble. She is our protective barrier shielding us from the outside world. She is the glue holding us together and making sure we are all taken care of and are prepared for the next steps in our lives. I may have provided the means of transportation from point A to point B but Camille has single handedly made this experience possible by just being herself; An amazing mother, a dedicated wife and the best friend I could ever have asked for. We love you so much and we could never have done this without you!!!! <3 <3 <3
Thank you again to all that have contributed to our cause through financial or love support as well as through thoughts and prayers. It has truly made this experience manageable and we are so grateful to everyone! Mayleigh has also received several letters & gifts from family & North Bend staff; again we are humbled by this jesture. It is going to be a whirlwind catching back up with work and life and I will try and post an update as soon as we know more details. Thank you for reading this blog and taking an interest in our daughters life. We are thankful beyond words!!!
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