Happy Re-Birthday Mayleigh!

The day we've all been waiting for has finally arrived! Mayleigh's bag 'o stem cells were delivered just past 11 am this morning and administering began shortly after. With 50mg of benadryl and some additional pre-meds on board, she was a little dozy but other than that she was comfortable and ready to go.
The time leading up to this moment in some ways went by quickly, but with the anticipation and nervousness it also seemed to creep up on us at a speed that resembled a sloth stuck in molasses. We have all done our best to stay positive and know that everything will all go as planned so sleeping last night seemed to be achieved by all.
My mom has been here for the past week as well so Mayleigh has had her Grandma with her through the past couple nights. The previous night was probably the roughest so far due to the ciclosporin (immune suppressant) causing anxiety. I honestly am amazed at how long it's taken for her to have a panic attack but she has been a rock star when it comes to the medications and poisons being injected into her body and still not even batting an eye. It's gotta be the age; the invincibility you have when your a young adult that doesn't allow worry and wandering thoughts to enter your mind. If I get a chest pain, the hypochondriac in my thinks I'm having a heart attack instantly. This time she would not escape the anxiety though and it caused her to shake uncontrollably and have a horrible night of trying to sleep. Not the greatest experience considering this was the first day she didn't have radiation or chemo. It should of been a day of rest and relaxation before the transplant but it turned into a nightmare for her.

They were able to get her calmed down with additional medication but we definitely did not anticipate the morning text to be of panic and concern. Grandma was there at least to keep her company so we were thankful again she's been here to help us with the love and support. But according to her, Mayleigh's attitude and spirits were raised somewhat when Mom and Dad finally showed up. It's awesome to know that she realizes she will get full love and attention when we are here and that is exactly whey we wanted to be here for her. The toughest time of all of this is when we will need to come home next week when she is probably going to be feeling her worst but thank fully Ian will be here to support her. Everything is going to continue to go smoothly though so again we anticipate nothing but positive results as we move forward.

As the last cells dripped out of the bag and into her body, we continue to think about how blessed we have been when it comes to how smooth this experience has been and how quickly we were able to get a donor. Without the generosity of this anonymous person, she would not be able to begin to piece her life back together. We are beyond words when it comes to the love and appreciation we have for everyone at OHSU, our friends and families, co-workers and even complete strangers that have taken the time to tell us how much they are thinking of and praying for our daughter. As a parent, you are always thinking about your child and how you want them to be taken care of and loved. You want nothing but the very best for them in every aspect and to know that people are thinking about them. You want them to be surrounded by friends and family that show their true feelings without hesitation and to let them know they care for them on a daily basis. Mayleigh unfortunately has not had a lot of friends and very few if any have expressed their concern or thoughts in any fashion towards her. This breaks our hearts greatly as all we truly want is for her to be loved and appreciated. Even family has been distant at times and hard to read when no words are ever said. It's definitely a lonely place to be on the 14th floor of such a huge facility where you are one of thousands here receiving care.
What we do know is that the love in this room is overflowing for Mayleigh and we couldn't be more proud of her as she took a huge leap of faith moving forward with the transplant. What once was a scary process to think about has now been transformed into a ray of hope and a window of opportunity for her...and most importantly a renewed life!
I am confident she will rebuild her immune system and gain back the time that was lost. If anything, as I've said before, we were given this past year to become closer and to try and understand each other better as things weren't as lovey at a time. I think parents also begin to realize you are not the most important things in their lives as they leave the house and begin to build a family of their own. It definitely wasn't easy having our only child move away but fortunately for us it was only a couple miles vs halfway across the country.

Maybe someday I will be thanking cancer for bringing us closer to each other instead of being a devastation to our family. We have spent more time together this past year than we have in the past 5 combined. It may not have been the type of coming together we had wanted but it was definitely the type of healing we needed. <3

WE LOVE YOU SO MUCH SWEETIEPIE!!!!

My Happy Place

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

No Turning Back

As the co-workers exit the buildings for summer break, I can't help but be envious when hearing the chatter of vacations and all the fun things that abound when you have the whole summer to enjoy with your friends and family. As the schools computer technician, I always call the last month of school the calm before the storm. Normally the tech needs slow down and as soon as students and faculty are gone, I am hitting the ground running getting everything ready for the next school year.

I have become accustomed to this and have never had a summer off; except for one time when I was in transition from working at ESD and being hired on with the school district. It was nice, but under the circumstances of being jobless and Camille & Mayleigh not getting to be with me as I visited family in Montana, it quickly became miserable taking a vacation without them. All I wanted to do was go home and before I knew it, the summer was over.
Another reason for feelings of envy is that for the 2nd summer in a row we will be heading to OHSU to spend close to another month in the hospital as our daughter undergoes an Allogeniec Stem Cell Transplant. I am sure no one dislikes this situation more than Mayleigh so please do not feel sorry for us. I can't imagine what is going through her mind as she prepares herself for the battle that is to come. The fears and anxieties have consumed us all but our poor daughter has many meds and chemo to deal with on top of it all. Not to mention she has had to go up to OHSU twice already to sign all the paper work and move forward with the procedure as well as attend a class on what to expect after leaving the hospital. She also had a bone marrow biopsy today and is being fitted for a lung guard tomorrow to protect her during radiation treatment. They will then return home on Friday and have one week before needing to return to start the radiation process. Her life has become nothing short of a voodoo doll filled with pin pricks and needles, mixed with sitting in waiting rooms and doctors offices. I cannot wait for the day that she can be free of all of this and get her life back. That time is now upon us and at this point.. there is no turning back. A bone marrow transplant is about to save her life!

On July 17th, Mayleigh will be admitted to  OHSU where she will undergo a procedure to install a Hickman Line. This supplies a main line to the heart for administering the stem cells, chemo and any other drugs needed. This will be her 3rd port she will have installed. We have also learned that the Ommaya Reservoir will never come out of her brain either...something we were never told when making the decision to have the procedure. Mayleigh has again not let it affect her and said her hair will grow over it so whatevs... :D 

On July 18th thru the 21st she will have full body radiation in which the hopes are to kill off her immune system and prepare it for the new stem cells the following week. After 4 straight days of radiation 2 times a day, she will undergo 2 days of intensive chemotherapy in which they again are attempting to annihilate her system. She will then have 2 days rest unless the stem cells show up early then she will only have one day.

Mayleigh's "Re-Birthday" is scheduled for July 26th (25th if cells arrive early) in which they will take the stem cells from a healthy, American, male donor that is a 9/10 match. This is all the information we know of the donor at this point other than a 10/10 would of been preferred but due to Mayleigh having a unique gene, she mostly likely would never find a 10/10 match. We are happy with the 9/10 to be honest and from what the doctor has said, she matches the most significant and important markers and therefore he feels it should make for a smooth transition. The process is as simple as a blood transfusion so once the stem cells arrive, they will attach it to her IV and administer through the hickman line. I've heard the whole process is very quick and painless as compared to the past. Even the donor has it much easier as they no longer have to do a bone marrow aspiration to harvest the stem cells.

In my opinion EVERYONE should be a mandatory donor at this point. Cancers are prevalent in every one of our lives and it would only increase the potential number of matches those in need would have to choose from. If this is something you are interested in you can easily sign up at http://www.bethematch.org and you can save someone's life today! I really hope we have a chance to meet this individual as he probably has no clue how much we appreciate his generosity and selflessness as he secretly saves our daughters life. You couldn't possibly give a greater gift and we are extremely humbled by the opportunity to find a match somewhere on this giant rock that could potentially end her battle with cancer forever!

Camille and I will be taking her to Portland for the beginning phase. We will be there the week she gets radiation as well as the transplant week. We really have no idea what to expect other than what we read from others in the ALL Facebook groups and transplant groups that we frequent. There are risks and rewards all over the board and ugliness that we can only hope to avoid. One of the biggest scares is GVHD or Graft Versus Host Disease. Symptoms can include:

• Rashes, which include burning and redness, that erupt on the palms or soles and may spread to the trunk and eventually to the entire body
• Blistering, causing the exposed skin surface to flake off in severe cases
• Nausea, vomiting, abdominal cramps, diarrhea and loss of appetite, which can indicate that the gastrointestinal (digestive) tract is affected
• Jaundice, or a yellowing of the skin, which can indicate that your liver is damaged
• Excessive dryness of the mouth and throat, leading to ulcers
• Dryness of the lungs, vagina and other surfaces

GVHD can be acute or chronic. Its severity depends on the differences in tissue type between patient and donor. The older the patient, the more frequent and serious the reaction may be. In most cases the odds are in her favor due to age, where she's at in her treatment, and how well of a match she has. She's young, she has very little disease present, and she has a good donor match. We again are trying to avoid letting our minds wander but there is definitely a million and one things that can go wrong. Mayleigh is staying as strong and courageous as ever though and we could not be more proud of her when facing a life or death decision such as this. So many things have aligned for all of us to get us where we are. Between our families, the school district, Ian and all the doctors and nurses involved; it truly takes a team to make something as ugly as cancer go away forever and there is no reason to believe she will have any other outcome but success.

Once OHSU feels she is healthy enough to be released, Ian will take over and will become her full time caregiver. He will have a ton of responsibility when it comes to the health and well being of Mayleigh. He will also have to quit his job to move to Portland to be with her so there is additional stress from finances and change from our tiny little town to the big city. He will have much help from our generous Aunt and Uncle, (Michael & Kathryn Becker) who have opened their doors to both of them to stay, including Camille & I when needed. We don't know what we would do without their help and we are forever indebted to them for their generosity. Thank you so much Michael & Kathryn!!! <3

We have also found out that my mother has taken a job in the Portland area for 3 months to also be close by. This makes us feel even better knowing there is another set of hands to give Ian breaks from time to time. She also works in the medical field so it's nice to have her questions and input when speaking with the doctors. Needless to say, Camille and I will have to continue to work around our schedules to be able to find time to come visit. She will be required to stay in the Portland area for at least 100 days after she is released for checkups and appointments. With all things going well, she could be home by Christmas. We are trying to keep the faith that everything has gone smoothly for us so far so why worry now...everything has fallen into place just like it normally has when things were meant to be and she damn well deserves a 2nd chance at life and to be cancer free. No parent can fully enjoy life when their child is living a nightmare such as cancer. It's a constant stress and worry that never goes away no matter what time of day it is. We are confident that day is nearing us sooner than anticipated. :)

This past week we took a little 4th of July camping excursion, the first of the year no less, as we feel we needed just one last get away before we gear up for our next adventure. Mayleigh and her friend Cassondra came up and stayed with us for a night; then Mayleigh returned for 2 additional nights with a surprise visit from my mom. We had an awesome time and it's always hard to leave but it was even harder this time knowing what we have in store for us. There's something about camping that just soothes my mind and soul and I've often thought that I could easily survive in the woods and put our technologies aside. I'm sure it would get tiresome but a week just doesn't last as long as you'd like when your in a state of zen.

We again thank each and every one of you that has sent a prayer, or a thought, or a positive vibe Mayleigh's way. We need them now more than ever as she prepares for the fight of her life. We would also appreciate any cards or letters of encouragement as she is in the hospital. We do not yet know what room she will be in but I'm sure if you send it to: OHSU C/O Mayleigh Workman, 14K Knight Cancer Institute, 3181 SW Sam Jackson Park Road, Portland, OR 97239-3098. Sending anytime in the week of the 17th is best. She'll be there 3 weeks and it takes about a week to get to her room.
If all things go well she will be released on August 4th which is 2 days before the World Footbag Championships in which I plan to compete in with all things going as planned. I continue to practice as much as I can so I am preparing as if it's a done deal. She is going to beat cancer and I am going to be the oldest routine champion in footbag history! :D I would just take Mayleigh beating cancer... there will be no greater feeling in the world to know that our baby girl is done with this chapter of her life and she can go on to adulting and stop having mom and dad all up in her business. :D

Mayleigh's Shrek mask :D

We do love the togetherness though and if for anything, through all of this, it has given me more time to get to know her and appreciate her the way she should be appreciated. She is one of the most loving, generous and caring friends one could ever have and I just want to see her surrounded by love cause that is what she brings to every one around her. Your beyond inspiring Mayleigh; your our greatest creation and we couldn't be more proud of how strong you have been through all of this. <3