Hello, This is the journey of Mayleigh Kyndall Workman and her fight to conquer a disease that was a mystery for nearly 3 months. We now begin our fight against Acute T-Cell Lymphoblastic Leukemia. Thank you for taking the time to read about her journey. It means the world to us knowing you are thinking of our daughter! We hope the purpose of this blog is not only to update loved ones, but inform anyone else struggling for a diagnosis.
Bless you all for thinking of us at this time!
To say we've had a pretty horrible week would be an understatement. It all started with having to leave Mayleigh, then her getting a staph infection followed by kidney failure ultimately landing her in ICU.
Here in a little bit they are finally moving her back up to the bone marrow transplant wing and this time she will have a beautiful view of Mt. Hood. Yah!
She really needed this tiny ray of sunshine. When admitted, all she wanted was to be on the side with the beautiful view of Portland. She has to be there another month so she was really hoping to not have to stare at a brick building again. Sadly she ended up right next door to the room she was in last year.
Mayleigh has been in a living hell. Her body is bruised and stretched massively due to 20 pounds of additional water weight. Her feet are so swollen she can't even stand, her armpits have completely been skinned and are blood red, her abdomen skin was stretched so badly it has wrinkled and looks as if it would slide off her. She's itchy as all get out and her throat and mouth hurt so bad she hasn't eaten in over a week.
Anyone contemplating a stem cell transplant; I would highly recommend researching all your options first. The people that have chosen this route have gone literally from the darkest pits of hell to try and crawl back to the other side.
I can never explain in words the amount of pain, discomfort and horror that one must go through to cure ALL but I do know that my daughter is one amazingly strong woman and I guarantee if you can go through this process, you can do anything your heart desires.
Mayleigh continues to show slow progress with her kidneys and isn't out of the woods yet but the doctor's feel confident she is heading in the right direction. With the world footbag competition starting tomorrow, I am still up in the air on whether I compete or not. If Mayleigh is doing better than I will plan to do routines which are on Tuesday at 11pm. Be the Match is promoting Mayleigh at the event and we are very honored and privileged to have her story told. Even if she can get one donor signed up it will be worth it!
Thank you all for your continued thoughts and prayers. Without the encouraging words and positive thoughts that family, friends and even strangers have sent us, we would be living a very lonesome nightmare. Your kind words are golden and we will cherish your love for our daughter forever!!! <3
Last night as we went to bed, we were under the impression Mayleigh had her infection under control and that she was able to go to the bathroom and all her vitals had returned to normal. I could not sleep until I had a final update and this was music to my ears after first hearing about her struggles.
At 5:30 am I got a text from my mom that she was breathing very heavy and they were possibly going to take her to ICU to keep a closer watch. By 7:25 my mom called once again and let us know this was much more serious and we should probably come up.
Getting this kind of call is the most dreaded of all when you are hours away from someone. I felt in a panic as I tried to think of which direction to go first. Do we drop everything and leave immediately? Does Camille have time to finish packaging her orders? What about our dogs and my work etc...
It was nerve wracking to say the least and instantly all your positive attitude is flushed down the toilet as fear fills the crevices of your mind. I am a natural hypochondriac so it comes easily for me to be 0-150 on the heart rate scale. I have the panic attack down so right away.. Adrenaline.. Check.. Heart beating out of chest... Check...Scary shaking feel like your gonna die... Triple check.
In order to not have a heart attack while driving, we decided to take a deep breath and I would start packing while Camille finished her orders. This worked out great and we ended up finishing right about the same time and was able to leave by 11:30.
Normally Portland would be a 4 hour trip but under the circumstances it was more like 3:15ish. It could of been faster if people actually passed in the passing lane...
We arrived at the hospital and had to ask for directions as we have never been to ICU before (thankfully). When we got to her room we were only able to get a glance at her before the nurses told us we needed to step out. What seemed like an eternity was more like 5 minutes but we were finally able to go in and see her and hold her hand.
She is beyond weak, she still continues to float in and out of sleep and her voice is barely recognizable. Honestly, she wasn't far off from when we left except her internals have decided to give out on her and she's much more swollen. Her kidneys have been having a rough time flushing out all the different meds she's been getting. The doctors are thinking the combination of the cytoxen and celebrex is what is causing a lot of the issues but the staph is what has taken her energy levels and functionality down to zero. Not to mention she's neutropenic on top of it all. She did receive red blood cells and platelets again so hopefully this we'll help with recovery. They have also had to give her sodium acetone to reduce the swelling in her feet as she has began to be septic and isn't releasing fluids as fast as she should. Overall she's a complete mess but she's still in there fighting. When she came to and realized she was in ICU she was angry with the nurses and was puzzled why they would remove her from 14k. She had no clue how bad off she had gotten and was ready to take it to them and let them know they were wrong. When we got this information we were ecstatic. If you know Mayleigh, you know she can be pretty stubborn and can somewhat short tempered. Knowing that she would wake up a spitfire gave us instant hope that our sweetiepie was still in there putting up a fight.
Her blood pressure has stabilized and her heart rate remains around 110 which easily doubles my own. Her heavy breathing and constant mumbling under hear breath is very hard to watch and my heart aches for her.
We were told if they can get her infection under control, which is looking promising, as well as remove some of this water weight she will be able to return to the bone marrow transplant wing and resume her protocol. It is somewhat concerning that they have stopped the immune suppressants and all drugs until her body can flush out all the toxins, but to ignore and proceed would be lethal. She is still day +7 and we were told she would get a boost to kick start her bone marrow on day +12 buy they ended up giving it to her shortly after we arrived. This was exciting because one of the nurses explained that this drug can reverse all the symptoms almost over night and her mother sores and pain would all start to fade. She's still early in her protocol though so I'm shocked that she's getting it this early. She could even engraft sooner if her body can pull out of this and her new donor stem cells start taking over. This would be ideal as she most likely would pull out of all this much easier.
This ride has been a very difficult journey. No one on the leukemia boat has ever sugar coated their experiences and the ALL group we are members of have stories like this and much worse posted everyday. We are all leaning on each other just as I am writing this to lean on you. If my words can help someone with a similar story or diagnosis, it makes every second of this blog worth while. Mom, Dad, Grandma and Fiance are all going to have to work as a team to assist her. This is not a one man job and it will take every ounce of our love and compassion to bring her back.
She has proven time and time again she's a fighter and I can only hope this fight is going to go exactly as we planned with cancer falling flat on its face.
UPDATE 8/3/17
Mayleigh's kidneys are still struggling and until they can kickstart or she can start clearing it out on her own they will be keeping her in ICU. We are waiting for the culture results to come back to see if the infection is gone. If it is they will continue to monitor and pray her kidneys reverse and flush. If the infection is there still they will probably have to pull her port and her Hickman line which would really suck. I hate to add additional stress to her but I think at this point she has succumbed to the fact she's a human pin cushion.
She is fighting with all she's got. She is very short of breath, she's exhausted and it's extremely painful to watch her have to go through this and there is nothing I can do but pray and hope this all goes back to normal so our baby girl can get back to kicking cancers ass!
Love to all of you following our story and sending thoughts and prayers!
Yesterday may have been the saddest day of our existence as parents. I have never been more emotional than I am now nor have I ever been more in love with my wife and daughter. It's like a layer has been pealed off of me that only allows pure love & compassion to flow through. I can now see the tenderness of life and the true meaning of family in a light I've never seen before and it's the most beautiful thing I've ever experienced.
I am beyond sad and reeling inside as we head back home for the week. To leave our daughters side during the most trying time in her life has left us tearful and heartbroken.
Mayleigh is currently in the biggest battle of her life as her immune system wages war on this new donor system that has now entered her body. We may have known what to expect to some degree but we most definitely did not understand the true struggles one must go through when getting a transplant.
Your body is first completely depleted of all its defenses. Your red and white blood cells as well as platelets are "sluffed" off as the chemo and radiation kill all life forms within. Your mouth begins to swell, your tongue is sore to the touch and your throat tightens and makes swallowing extremely difficult. So difficult most pills are made into a liquid or IV form in order to consume. Your body shakes uncontrollably from the immune suppressant, anxiety consumes you as all the meds fight each other for supreme reign while sleep deprives your body and mind from all comprehension. This is just a portion of a leukemia patient's battle.
Mayleigh has endured a full year of chemo, multiple radiations and countless prescriptions to alter the course of her disease. She has gone through so much in just a short amount of time and I have commended her over and over again on her outstanding attitude and will to fight. I had not seen anything until this final showdown with cancer. The first thing she said when she found out her blood type was "I used to be O positive but now I am B Positive; and it's ironic cause that's what I've done through all of this". Makes me so proud and tearful to think about this as she has been so unbelievably strong through it all. She has had more pain this past year than I have had in my whole life and she's never hesitated once to do what is asked of her. She is the strongest, bravest, most amazing woman and she is100% cut from the same cloth as her mother.
Upon arriving home last night we got the call from my Mom that she and Ian were not in their room and weren't outside doing laps. She became concerned and asked where they were and she was told that Mayleigh was showing signs of a fever and they took her to get an X-Ray of her lungs to make sure she didn't have pneumonia. Thankfully the results came back clear and no signs of pneumonia. They ended up giving her some Tylenol which also helped her mouth inflammation. She even said she may be able to eat something. I was beyond ecstatic!
Today we have had very few updates but just as much concern and need to be in the loop as ever being that we are 4 hours away. We tried several times to reach out and didn't hear anything. Finally we were able to talk to her but her voice is so weak and she is so drugged up that she was hard to understand as she fades in and out of consciousness. She has said that she feels like she's in multiple dreams at one time and opens her eyes and is surprised she's not where she thought she was. It's been somewhat hilarious at times based on what she's saying or doing (couple times she was laughing and kissing the air) but mostly just sad knowing she's having to battle even to simply get a few words out or write a quick text.
Last night my mom was told she wasn't needed as Ian was there to care for her but she decided to go up and drop off a package for me today and ended up walking into room as the nurses were trying to insert a temporary catheter due to Mayleigh not going the bathroom enough. We were getting concerned about this before we left as well due to lack of fluids and if she wasn't taken in enough they would need to give it through her IV. This would also be a concern in that the last time she was at OHSU she had extremely bad swelling in her feet and ankles. So bad they were seeping water out of her skin and causing it to stretch. It looked extremely painful and we can't help but be concerned for this to happen again with IV fluids. Regardless, it is far better for her to be over-hydrated than under.
The stem cell transplant introduces massive mouth and throat swelling, digestive issues and various pains throughout the body. The side effects are endless and the amount of things that can go wrong are even more horrifying so it's been easier to just avoid the negative and stay focused on where we want to be. The nurses try and make sure the patient takes in 2 liters of water day to avoid issues but she has not been able to swallow very well so it's dropped significantly. She was started on IV fluids to remedy this but they still aren't seeing the results they should. They also ran some blood cultures to check for infection and they have come back positive for staph. The doctors are very concerned about her kidney's though so they are going to keep a close eye on her and see if she's able to produce more urine as it should be going to the correct place but it's not not. The nurse reassured us they have her on the right antibiotic though and if she doesn't show any changes they may need to take her to ICU. But only because they wouldn't be able to administer some of the drugs they would need on 14k. Her blood pressure has been very low as well so they may need to give her some medication to bring it up if needed and that is the one they do not have available for her in-room.
This is all very concerning for us and we are contemplating leaving tonight after work or even in the morning. We cannot just sit here waiting and wondering what's going on and I think all parents would probably feel the same way and drop everything to be there for their child. We are trying to keep a clear head though and wait for additional info but panic, stress and anxiety is all I'm feeling at the moment. With my mother there it is at least comforting knowing we will get all the updates as they are happening and being that she's a nurse practitioner, she will make sure the care is above and beyond. She also asks a lot of questions to the doctors that we may not even have thought of so from my perspective my mom has been sent to us for good reason and we love her to pieces for the support she has given all of us. <3
We are desperate more than ever for your thoughts and prayers and to send Mayleigh all the love, energy and strength we can. She is currently day +6 and is halfway to getting a drug that will kick start her new immune system. Once this happens the patient normally begins to feel better almost overnight. Once she engrafts she will begin to produce new white blood cells and they will go out and start looking for damage to repair. Shortly after, the patient begins to feel like a new person and starts to pull out from the depths from which they were residing. Mayleigh is currently in the pits of hell trying to find her way out but she has a tough climb to reach the surface. She is halfway there though and after today will be on the home stretch.We as parents are beyond ourselves with fear, doubt and anxiety for her. Without question this is the hardest thing I've ever had to go through. Each and every text, Facebook message, phone call and post is what keeps us going. That and the strength of Mayleigh and our family. I've said it all along that it would be much harder if she wasn't doing well but so far it's been very minimal when it comes to issues until now. All I can do is take Mayleigh's advice and live as she has lived and B POSITIVE! This is probably the most important lesson I can learn and it would be amazing that my daughter would be the one to teach me this as in her teenage years I would have considered her the exact opposite at times. It's truly a testament of how far she has come and how much she has grown this past year.
Thank you all again for following us on this path. It is a very ugly one when you're the only one walking it but there is always room for more and it's much more beautiful to share it with those that truly love and care for you. We thank you all from the bottom of our hearts! <3<3<3
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
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
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
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!!
