Leukemia Blows!

When arriving at OHSU at 5:30 am for Mayleigh's hickman line procedure, we all had immediate familiarity with the walk from the parking garage, the waiting rooms and even the doctors and nurses that greeted us along the way. Even though the facilities are monstrous in size, I was still able to remember the different turns and elevator hops that were required to get us from point A to point B.
Deja vu would consume us at every corner as we were reminded of the countless times we made our way from "purple parking level 1" to 14k. The obnoxious sliding door that greets you as you enter, followed by the beautiful balcony view of the tram overlooking Mount Hood in the distance. And finally the phone call to the front desk to let us into the 14th floor of the Kohler Pavilion a.k.a Bone Marrow Transplant Wing. 
Mayleigh was admitted almost exactly a year ago for 30 days to undergo an intensive chemo regimen called induction. She has since then finished the consolidation phase and was 4 months into maintenance when the call for stem cell transplant presented itself. She has maintained remission status the whole time but minimal residual disease, or MRD for short, had presented itself twice since her November 2016 bone marrow aspiration so here we are.  The dates and times are nearly identical to last year and as we get the notifications from Facebook or Google Photos about previous posts, it is a constant reminder of our adventures in Leukemia land and I will resonate Mayleigh's shirt and say LEUKEMIA BLOWS!!!

Upon arriving at the surgery check in, Mayleigh was informed that the hickman line procedure would not be done under anesthesia and she would be awake for it and that meant feeling and knowing everything that was going on. Immediately she began to feel panicked and concerned about the procedure and for a minute I wasn't sure we were going to get off the ground.

After talking her through the process and some hand holding, she finally calmed down and just like everything else that has happened to her; she bucked up and did what she had to do. She even gained back her charming personality as they wheeled her away for the procedure.
Personally I would have probably had a panic attack myself, so I can't blame her for being a little scared of someone poking a hole in her neck so they can jab a tube down her vein for a direct feed to the heart. It is definitely more pronounced than her portacath as it goes from her neck down to her heart and she can even grab a hold of the tube.

Once she was finished with the hickman line there was a 2 hour wait in the recovery room as we waited for transportation. We quickly remembered the bottleneck of the hospital and even though the nurse and her room were ready for her, the transport crew were not. Needless to say we were finally able to claim a room and it was one room away from her stay last year in room 21. This year she would grace room 20 with her presence. She had requested a room on the East side due to such a beautiful view of Mount Hood but she unfortunately was not granted this wish. She has to be here a month so why not have the best room in the house? It was worth requesting for sure...



Mama was kind enough to sprinkle the room with decorations and quickly added a nice touch on the windows and bulletin boards with orange colored butterflies. For those of you that do not know, the color for leukemia awareness is orange. It's a color I have had very little of in the past but our collection is growing quickly.
Mayleigh was still somewhat groggy as she began to awake from the pain meds. We again were able to reconnect with many of the wonderful staff as we arrived at 14k and we were somewhat surprised that nearly all of them are here a year later. I guess it should come as no shock as it's such an amazing operation. The coordination that goes into every aspect of care they provide is mind boggling. They always make you feel welcome and are always asking if we need anything so it's again been a blessing to have such great care for Mayleigh; with top notch doctors and cutting edge technologies, it's hard to have any other feelings but optimism as we enter the unknown waters of transplant.

The day after we arrived, Mayleigh would undergo 4 straight days of "total body radiation" (TBI) twice a day. She would get her first treatment at about 7:30 and need 6 hours in between so the 2nd dose would be around 2:30. This would require her to stand still in this contraption with handles and glass encasing her while a beam of radiation was shot towards her from across the room. She would require a lung guard to protect her lungs in this process and a lot of will power as it was a very uncomfortable position to be in for a half hour at a time. For 2 days she would require 30 minutes and the last days it would drop down to 10 minutes.

Out of all the things she has had to deal with on this protocol, radiation is by far the worst thing I can think of that she has to go through.

The long term side effects are horrible and lets just say between all the chemo and radiation, being grandparents does not seem to be a position we will hold in the future. We are firm believers in everything happens for a reason and if it's meant to be it will still happen. We want nothing more than to have our daughter's life restored so little ones are the furthest thing from our mind but I know it's definitely something that is weighing heavy on Mayleigh. To be told you will never have the chance to bear a child or raise a child of your own is a pretty profound experience and I feel horrible that she is being told this at such a young age.

Once Mayleigh finished her final dose of radiation, she was taken to the front of the office where they have a bell that she was able to ring to signify the end of tbi. The ladies in this department were amazing and probably deal with patients of all ages but they related to Mayleigh so well that it was bittersweet since we wouldn't be seeing them again (we're confident she's never getting radiated ever again!). They were genuinely happy to have her be finished but she found one of the them also shared her same sensory issue misophonia. It was great to see her bond with someone as this is a very rare condition that very few no about. They instantly hit it off and she may have a life long friend :)

Today marked the first day of chemo. A 2 hour process where cyclophosphamide was administered to continue to kill off her cells. This lovely agent isn't picky as it destroys her immune system, helping bring it down to levels necessary for stem cell transplant (SCT). She again has battled right through the day but not without some side effects. She has been having extremely bad stomach pains and her hips have recently been diagnosed with Osteonecrosis after an MRI was done. This is restriction of blood flow to the hip bones which causes them to start to break apart. It's a long, slow process that is due to the massive amounts of steroids she has been on but the only solution ultimately is a hip replacement if it gets bad enough. She will also need to make further efforts at weight loss to help alleviate the pain but for now she is needing to focus on the task at hand.

With one day of chemo down and one to go, we are again thoroughly impressed with how smooth this experience has been. We know the worst is yet to come though but we are thankful she is taking to the radiation and chemo with very little immediate side effects. It seems that the main issues are ones that will be long term which in the end will probably come back to haunt us but we can only focus on one mission at a time. She has truly been blessed with so many people putting her on prayer chains and thinking positive thoughts and sending her great mojo that we are so grateful to have each and every one of you thinking of her. I think kids feel extremely alone these days as social media consumes most lives.



The anxieties and panic in our youth is astounding considering most have very little to no real stress to deal with. Mayleigh has nearly 30 different prescriptions, chemo, radiation and is living in a hospital for a month with her life on hold, on the line and still maintains a great sense of humor and a positive outlook. She is a great source of inspiration to me and I am so proud of her fighting spirit and lack of complaints. This does not mean she is immune to anxieties, but under the circumstances, she's an absolute rock star in my eyes <3