Celebration of LIfe

As we celebrate  the life of Mayleigh Kyndall Workman, I would like those that could not join us still be able to watch her tribute video. It's the hardest thing I've ever done as her father and I wanted to share her unique personality and perspective on life with anyone that is willing to listen.
We have cried endlessly as we sift through our memories and we have nothing but pure pride and joy for how amazing our daughter was in so many aspects. She was truly a blessing for us all and we will always honor and cherish those memories for as long as we both shall live.

    

Full Celebration including ceremony

To view photos from Mayleigh's celebration visit:
https://photos.app.goo.gl/GO6Ma4U8CUpfhUcp2

Tidal Waves

One month has passed since our daughter took her last breathe and the emotions continue to pound our hearts like endless tidal waves cresting salt filled tears that have no end.
The layers of our pain have been somewhat pulled back, like curtains revealing a site rarely seen, but the agony of losing Mayleigh is not the only pain in which we are having to deal with.
Many issues have surfaced that have caused a more painful experience than anticipated and for whatever reason it is beyond our control. Honesty and restraint have been held back to avoid the levy from breaking but a full collapse has been anticipated for quite some time. It was just a matter of time  before a flood would ensue and unfortunately for us, that time is now.
The sorrow and pain we have been consumed and swallowed up in has been taken over by a different kind of suffering and It all has brought us to what we thought was a spot we could never reach and that is depths even lower than we currently reside. We are numb, confused and most of all crushed beyond all comprehension.

We are holding on to our daughter's celebration day by a thread as we can barely contain the feelings of anger and frustration that have consumed us. The day we celebrate our daughter's life needs to be filled with nothing but pure love and pride for our amazing sweetiepie who fought valiantly and touched the lives of so many. I continue to have strangers tell me that our story has made an impact in their lives and they know full well the tale of #MayleighStrong. I always feared that if anything ever happened to her, who would even know? How many people would give two shits if she was gone from this planet? There were times where I felt not even family cared. We would go months without calls from anyone for ourselves let alone our daughter. Being that we live so far away it's hard to get to see family but with all the communication means you would think it wouldn't be to difficult but for whatever reasons, time slipped by. Until she was diagnosed (and even after induction) it was a very frustrating subject but I think in a similar situation such as a new boyfriend or girlfriend; the shine and sparkle of something new eventually fades and it's luster begins to diminish.
I take responsibility for doing the same thing and have many resentments and things I would love to have changed. I wanted a second chance to show Mayleigh just how much I could love her and how the level of appreciation for her must grow tenfold. I know she felt this in the hospital and I am so grateful to get that opportunity to let her know that I failed her at times. She deserved better and I apologized for all the wrongs I put her through. I just wanted her to know that I could do better and that she deserved better and in the end I am confident she knew her daddy would be there for her no matter what!

I know at times in her life she felt like Mom and Dad were somewhat controlling but what kid doesn't? I think every parent would tell you the same thing in that they were just trying to protect them. Whatever rule or thing they couldn't do was purely out of love on most occasions but sometimes a little compromise could have went a long way (on both sides). We were a lot alike and we would have our moments of head butting but she always knew she was my sweetiepie and I would clear mountains for her.
Still, this is very hard to understand when trying to gain your independence and she barely had a year of it before she was thrown right back into the arms of mom and dad. And this time she had company, which proved an even more difficult challenge than expected. Ian disliked parental figures and would prove to be taxing to speak with in regards to respect of our home. Mayleigh would have to be the go between and on most occasions it was very difficult to always put her in the middle of this sometimes frustrating situation. She didn't deserve to deal with this on top of chemo and radiation and we would continue to have many more confrontational interactions over the course of the year. Mostly ended in complete disrespect and disregard for our wishes. Out of respect for Mayleigh alone, he was allowed to stay but if anything, I did appreciate that he at least held a job and was taking care of her financially and somehow emotionally.
But this was a direct result of having that independence and then losing it. A product of "you gotta do what you gotta do",and at that point in her life, after coming out of induction, she needed to be in a safe, clean environment and in our opinions; under our roof so WE could take care of her. It was hard to communicate and feel comfortable prior to diagnosis. It took us 3 months to find out what was going on with her and during that time she developed some very strange symptoms which no one had an explanation for. We would want to see her every day and for more than a few minutes; we wanted to be there for her every second as we were all getting scared this was something far more serious but they were still living on their own so it was lots of phone calls. Needless to say our fears were hit head on with a diagnosis of cancer.

As her father, I have owned up to my wrongs. I have beat myself up more than anyone else ever could. I know I could do better and for that reason alone, I can live with those decisions. I was a great father in that I told her I loved her every day of her life. Sometimes obsessively, just as Camille and I do. I worked my ass off to give her everything she ever wanted. I wanted to spoil her every birthday and holiday and I think we did a pretty good job at it. Most importantly of all,  we let her be her own person and that was to be a unique, one of a kind, lovable, artistic, brave goofball with a passion for making others happy and giving those she loved all that she had. We couldn't be more proud of the women she became! <3

Shortly after getting home from the hospital the day Mayleigh passed, I received a Facebook message from an old wrestler I coached that was a foreign exchange student from Portugal. We have remained friends ever since but he wanted to share a story with me.  I didn't think their was a chance in hell I could feel so good on the worst day of my life but Fred gave this old man exactly what he needed to hear that day and I will forever be grateful for his kind words.

This is my story of Fred Barrahona followed by his heart felt letter:

In 2013 I was given the opportunity to coach wrestling. I always loved wrestling and I did very well as a youngster considering we didn't have high school wrestling where I grew up. We did have a club team though and I continued until my junior year. But other sports like football began to take precedent and there were very few matches for high school kids as they were burnt out from a long season already.

I wanted to be a coach like nobody's business, and when I finally was given the chance I was elated. I dreamed about this opportunity. What I would do if I got the chance to implement my own ideas & regimens; to build not only strong physical body's but tough, morally fit minds. Respect being at the top of the list as it's a lost art these days. But I was determined to do what ever it took to shape those young men and women into at best good people.

In my 2nd year I was given the opportunity to instruct a young foreign exchange student named Fred Barrahona. Fred was a first time wrestler with very little skill but charisma seeped out of every pour. He was the ladies man, the funny man and many times I was wondering if he was really going to take this serious or was he wanting to just put on a show. While I found him amusing, when it was time to work I meant business and he didn't seem like he was all in from what I remember.

Not only did Fred make 2015 a great year for me though, he also made it very challenging as a coach when it came to awards. I also had another wrestler that had much more success. Won many more matches. Worked just as hard in the mat room. And in fact, they wrestled each other exclusively as they learned to push each other to their limits. THey would bleed on each other, hurt each other and bath in each others sweat pools but at the end of the day... They were brothers in the mat room. And little by little, week by week. Fred began to grow as a wrestler.

I could see it in his eyes and his determination was like no other. He had changed dramatically from the first day I had laid eyes on him and he had proven to me that he had exactly what it took to win not only on the mat, but off.
Fred was awarded the heart of a champion award that year and he proved it to be true day in and day out. Not only did he work harder than anyone else in that room, but he did it with a smile on his face and love in his heart. I knew all along he was a one year and done kid due to being an exchange student so I was already sad knowing I wouldn't get the chance to coach him ever again. I would think anyone that had the chance to enjoy Fred on their team that year knew he was a down to earth guy who gave 100% in everything he did. I will always remember him and the joy he brought me that year.

Hey Larry,
How have you been? Missing the portuguese heart of a champion i guess😹, or maybe just my stinky underwear.
Let me tell you a story... 4 years ago, a small kid decided to visit the world. He had no idea where to start, so a friend of his decided to help him by telling him her own story about a crazy country on the opposite side of the world where she had been on her senior year. That story had so many details and small adventures within, that the two friends talked for the whole night long.
In the morning, when the sun touched the 8 am... He was certain of his future. He was going to the USA.
When he got there he felt that he was living inside a movie cause basically everything was "like the movies" but he soon realized that this new reality wasn't fully describe in the movies or series, there was more in this strange creatures called the americans than what he thought on first hand.

He made friends, he met girls, he was introduced to many new teachers, coaches and colleagues, he even had a new temporary family. Everything was going around his mind with the culture, language, history, background. And he took all of 3 months to establish and start really living that life not just as a stranger but as it's own (just like his friend told him).

And right when he started living as an American, the second term started, and with that comes the big decision... Basketball or wrestling. He loved contact and he was also horrible with that basket thing so he made up his mind and chose to be a wrestler.
There was one problem tho, nobody told him that there was a crazy coach with some crazy workouts and trainings and long runs and chicken walks... Waiting for him in the mat room. Yess that man is crazy.

For 3 months he worked his butt off, stretching and stretching his limits, sweating more water than what he thought he had, bleeding from his nose more times than he had ever bleed. And the more he worked the more he failed to see how different he was from the first day he stepped on that yellow mat.

It's on you Larry, that small kid is a different grown man today cause he was lucky enough to cross his path with your path.

He's now stronger mentally and physically because he was brave enough to follow your advices and trust you even when he felt that your advices weren't easiest ones.

That's who you are coach, you're the man that makes other people find qualities that they didn't know they had. You're a man that pushes people to the limits so they see how far can than go. You're a man that can love everybody even a strange portuguese kid that wanted to learn how to wrestle, and embraced him as your own.
Coach, on this unhappier times i'll try to make the same thing for you that you did for me 4 years ago. And the best thing i can do is to pray for you, for your family and particular for Mayleigh and her salvation.

I'm very sorry for your loss and i hope you all recover well.

I really miss you all and hope to see you soon, maybe in the mat room😅

Best regards

Fred Barahona

I didn't get the chance to go out how I wanted to and I was just getting started but coaching definitely changed my life. To have the ability to inspire a young mind and watch someone grow from your lessons is truly a powerful experience. I most likely will never get this chance again but as the old saying goes in the NBHS mat room. What I had I gave, what I saved I lost forever.  Thank you again Fred. Our paths were definitely crossed for a reason and you've proven time and time again you have the heart of a champion! <3

Loved more than you'll ever know...

It's been one week and a day since our daughter took her last breath. It's been one week and one day since we lost the most unique, one of a kind creation that was equal part mom and equal part dad. To say we have lost touch, meaning and our way is an understatement. If not for the kind words and encouragement we would barely have the strength to get out of bed. Each day is filled with constant reminders of her existence; her clothes that she left behind, the gifts she bought me for Father's Day as well as a heart felt card. The Mother's Day gift Camille got when not able to spend the day with her as she was in Salt Lake City. Deep down inside she felt that she may not get another Mother's Day just as I had felt a few months back in our March post about something terrible happening. I had a dream that seemed so vivid while waiting for her bone marrow biopsy that it haunted me during this whole process. In my dream I felt as if Mayleigh was dying or already had passed and I was telling her I'm sorry for all the things I wasn't able to do for her or any time I made her sad or didn't feel like I was a good father. It was a feeling of remorse, regret and pain knowing I was saying good bye in a way but the saddest part was when she said, "I forgive you dad, it's OK. I love you. I'll be OK". I almost seem to recall shedding a tear as I awoke, but also having this dread feeling from that moment on that she may not make it much longer. She hadn't had the talk with OHSU about the transplant yet but I knew there was a ton of risk in this and I became very fearful of moving in that direction. Ultimately, it was 100% her decision and she knew the risks and even signed off on everything and it was explained to her fully. She felt this was her best chance at survival.

There are so many emotions racing through our heads. We have many layers to this process as well that keep replaying over and over. We just lost our purpose for living and our only daughter for one; we just spent the last year at her beck and call, there at a moments need, traveling with her to Eugene for multiple appointments and overall trying to put her care back into our hands so she had everything she possibly needed. We wanted to ensure nothing else would happen to her and that we would be there no matter what if things weren't going so well. We also just spent the last month living in a hospital, hopeful, that everything was going to work out just as planned and she would be the fastest person ever to engraft and we could all get on with our lives. She has too many hopes and dreams and there is no way it's going to take her now! She has powered through a whole year of chemo and radiation and she only needs just 6 more days of it before her transplant and things would be back to normal. Not having our daughter able to walk through our door and come in and give us a kiss and hear her say I love you mommy, I love you daddy any more is instant tears to our eyes. We are broken beyond our wildest dreams and nothing can be done to fix it. No words can do justice and it's sad the people loving us and caring for us feel that as well. But trust me... each word is read aloud and multiple times and we care more than you'll ever know. It may bring the tears flooding back up but know it will never get old knowing someone is out there thinking of our daughter. <3

Pain, stress, panic. These were the main emotions we would feel after that first week. Up till transplant day and even up to day +3 things were going somewhat as planned. I even recall a text she sent someone saying, "Ok, the hard part is over with radiation and chemo. Now I wait".Within the next couple days, she began to get some very painful shoulder pains which they had blamed on the radiation possibly affecting the gall bladder. Regardless it shot pains in her so deep she couldn't lay on one side. This eventually led to pain on the other side so she was forced to only lay on her back. This introduced excruciating pain on her tail bone and eventually a spasm in her left rib cage area. Even taking a deep breath would set this off and the only thing that could get her to calm down or subside any of this pain was pain meds. This just caused more sedation and in and out of consciousness but at least she had less pain. In hind-site my mother has offered up the conclusion that the radiation may have ultimately done a number on her pancreas. She was getting very high doses and it's possible her body just couldn't take the levels they were giving her. This would make sense down the line as she continued to have complications they weren't able to explain.
After getting to ICU, she was forced to stay in bed as the water they were injecting her with was makeing her swell so badly her feet began to blister. This, also combined with the need to push herself up over and over without an immune system, caused even her hands to form bruises and more blisters. Due to her liver not doing well she became very itchy and had a yellow hue for a few days but everything began to worsen when her kidneys began to fail her. Her lungs also had water on them making it difficult to breathe. It ultimately brought n a 30 hour marathon of breathing 60+ breathes per minute. Her poor body could not take the pain and suffering any longer and they were forced to intubate her. That would be the last moments we would be able to hear her voice.
For the following week and 2 days she would be on a ventilator undergoing dialysis trying to dry her lungs out and get her kidneys to start functioning. They reassured us to go home if we needed to but there was never anything that we were that desperate for. It was a good thing too as the next day her heart began to go into afib and her blood pressure dropped dramatically. They never bothered to call us until we got there and we ended up just going in and the nurse explained the situation, but assured us it was under control. We ended up staying with her the rest of the day and into the night but left around midnight. Everything seemed to once again be calm and she was back to being calm & comfortable. Needless to say the same exact thing happened the next morning and it eventually got much worse to the point there was nothing left they could do.

This extra layer of pain from her suffering is probably the hardest. Not only was she trying to be positive and keep a good frame of mind but she was also trying to listen and just breathe... allowing us to help calm her in times of panic. Mom was the last one to see her at 5 am before intubation. I had stayed up till 3:30 am and I asked Ian if he was going to bed and he said he would stay there. I told him I would be in the waiting room and to come get me if she needed me. I spent the whole night trying to keep her warm by covering her and caressing her to make her feel calm and comfortable.She would give me "shrug hugs" endlessly when i put my hand on her neck and shoulder. She was starting to calm and looked as if she could fall asleep so I felt I could sneak out and get some rest for a bit. I was confident she was going to eventually come out of it.
Fast forward to mom entering at 5am and she let out the loudest scream for her she has ever heard... even with her throat hurting beyond belief she yelled  "MAMA!!!!!!!" She felt as if the nurses were out to get her and she just wanted them to get off her but her oxygen had fallen out and her respiration dropped like a rock. To them, she was going to die if she didn't get it back in her nose but to her, she wanted them off her and out of her way so SHE could do it. She was very sensitive to touch and others doing things for her, including touching her head so I really wish I was there to tell them to just back off she's got it but the severity of the situation was too great. Camille did an amazing job calming her and telling her like a scuba diver she needed her oxygen and without it she would die and to just trust her "Have I ever lied to you ever Mayleigh?" she asked. Mayleigh nodded no and began to calm down and focus.
Shortly after, they needed to lift her up and re position her but the lift slipped and knocked her oxygen off again and once more all hell broke loose. At this point they asked my wife and mom to leave the room and she became enraged. It was very unfortunate my wife had to hear her in this state but she had literally reached her end and could not take it any longer. They sedated her shortly after and she was intubated. I learned about all of this shortly after but they felt I was better off not seeing it as I would of probably had a panic attack myself. I would of rather been there though just so I could of heard her voice one last time. As I mentioned, I slipped out of the room as she started dozing as I didn't want to wake her since she had such a rough go for so long. She needed rest more than anything and I was just going to be in the other room.
This layer of pain and suffering seems to be the hardest layer to get over for me. The memories of how badly she was bruised and beaten replay in my mind over and over. Her throat and mouth hurt so badly she used hand jestures for what she wanted to avoid speaking  For this reason alone I am thankful she is longer in this horrendous state.

The last and final layer is also extremely difficult to encompass and that is the fact that she will not get to do the things she was planning such as getting married, having children eventually, getting their own place and most importantly... getting rid of cancer!

Ian was also witness to these horrific scenes and I think he finally understood our concern when he wasn't up there with us before the 31st. We spent 2 weeks with her and then he was coming up so he missed a big portion of the beginning stages. He only saw the downward spiral unfortunately and I can't imagine what that must be like for him to watch his fiance go through this without being able to help her. Even as her father I felt helpless but I was there rubbing her feat, handing her chap stick, getting her suction for her, my arm and hand there for holding and for whatever need she may have.
I'll never get to walk her down that isle and see the joy in her face as she ties the knot. She was always our little princess and I think deep down inside she always wanted a prince to come and rescue her and make her feel as if she was truly a princess. We called her sweetiepie cause she would run up and give kisses to anyone that asked and was nothing but a ball of love and happiness. She was always smiling as a child and had a silly sense of humor that always made us laugh. She developed some quirks later in life and had some sensory issues but we loved her all the same. We had challenges and tough times just like any family but Mayleigh was never one to dabble in drugs and alcohol and always went out of her way to get her friends if they had a bit too much to drink. She normally stayed home, locked in her room drawing or keeping to herself. She was honestly low maintenance, even as a child. I can recall nearly every road trip she would sit in her seat and just entertain herself the whole way with little fuss. She was nothing short of a miracle to us and we just can't get over the fact that she's never coming back. It's a situation I've talked about many times. If any of you have watched "What About Bob" you may recall the scene where Ziggy is telling himself "I'm going to die... We are all going to die". It's a horribly sad fact that in the end, some of us will have to endure the pain and misery of losing some or even multiple loved ones over our lifetime. To have to feel this level of hurt is not an emotion I care to have for a very long time. At 44, I have to succumb to the fact that as good as I've had it; when it comes to death in my family, I have much of it to look forward to unfortunately and for that I have to come to this final conclusion throughout this experience. Many people have said it and there are many quotes out there that try to explain it but...

Do not ever regret not taking the time to tell your child you love them. That you are proud of them. That they are perfect just the way they are. They are every bit as much a part of you as you are a part of them and you need to lift them up to let them feel confident enough to know they are able to achieve anything they want in life. Don't wait till it's too late to try and make up for lost time cause you never know when life is going to throw you a curve ball. I'm just fortunate enough to be the Dad of one of the most loving, caring and selfless woman ever created and she is cut from the same exact cloth as my beautiful wife, who I would never be complete without. During her last moments, we told her we loved her and that she would always be with us. I asked her to blink if she could hear me and she did. She also blinked when mom asked if she wanted her to give Ian a hug. I know she was at peace knowing we all loved her with every ounce of our being. We all watched as she took her last breath at 3:39pm.

Mayleigh's last bone marrow biopsy came back at 2 MRD cells per million down from 5 in March. Who's to say if she kept on the chemo path that she would have beaten this without a stem cell transplant. It's a question we will never know unfortunately but I will think about it the rest of my life. It really doesn't matter at this point but I know for a fact that she would still be here with us. The risk though was if it ever did come back and she got out of remission, it would be near impossible to keep it away and she wouldn't likely be a candidate for a transplant. It was a huge risk to take but she had the bravery and courage to go through with what she believed in; as she always did. <3

We hope you can join us for a Celebration of Life on Sunday, October 8th from 11am-5pm. We have many things planned including different activities that she enjoyed and lunch. We will create a Facebook event as well as a Form to allow people to choose items to bring or if you'd like to donate to the celebration. We are also accepting any and all origami cranes to be sent to our home address at:
2110 Mcpherson Ave,
North Bend, OR 97459

Thank you all for participating in our journey to fight ALL. We do not consider this a defeat as we have ALL grown exponentially from this and for that we are eternally grateful! We of course would want nothing more than to have our sweetiepie back but she will never have to worry about cancer ever again. Rest in peace Mayleigh Kyndall Workman. You are loved more than you will ever know!  <3 < 3 <3

The Saddest Day of Our Lives

9:20am August 15th

We need a miracle. Mayleigh is on 3 low blood pressure medications and still not doing well. The doctors have prepared her for the worse and we have had to tell them we do not want cpr as it could cause even more pain and suffering as her body is so frail. We need every prayer warrior out there hoping for a miracle for her. We are beside ourselves with pain and fear this may be the end. Please, if there is someone listening please have mercy upon her. Please give her the 2nd chance she deserves! She is too sweet and kind to have suffered through this battle only to lose. We have not given up but the doctors have no idea what could be causing this other than a possible infection. She's on several antibiotics as well. We appreciate your energy at this desperate time of need. <3

At 3:39 PM on August 15th, 2017 we lost our only daughter and the love of our lives Mayleigh Kyndall Workman. She fought harder than any of us could have asked for after undergoing a non family donor stem cell transplant to cure T-Cell Acute Lymphoblastic Leukemia.

Mayleigh's kidney's ultimately failed her and her blood pressure plummeted to the point she was being supported by medications alone; the doctors and nurses did all they could to try and save her. She is the bravest, strongest and most courageous woman I know and we are beyond devastated as you can imagine.

We want to thank each and every one of you that has sent us your kind, loving words of encouragement and support.  We could not have done this without each and every word spoken and or written to us. We are comforted in knowing she left us in peace and is no longer in pain. One of the last things she told my mom when she was visiting was that she was more worried and concerned about the pain and suffering that WE would go through in times of trouble than her own. It's a testament to how she lived her life as she would put her friends and others in front of herself. She also loved animals and became a vegetarian because of it so she could avoid any suffering to other living creatures.

It is going to be a long process before we can put the pieces of our lives back together again. The suffering and pain she endured for this past month is more than anyone could bear to watch and it was excruciating for all of us to see her go through this. She continued to give everything she had till her last breath though and for that we are beyond proud. She is the greatest gift and our most precious creation and we are empty inside without her. Ian is also feeling the same pain as he lost his fiance and is now a lost soul with no direction. We have reached out to him to let him know that we will do whatever it takes to honor their relationship and help in any way we can. Currently he plans to stay in the Portland area as he also tries to pick up the pieces and find his direction. We wish him all the best and appreciate all he has done for our daughter! <3

Thank you again for following our story and reading our blog/updates. We truly appreciate and cherish each & every one of our friendships and are eternally grateful for having you in our lives!

Love,

Larry & Camille Workman

Day +19 - We Need a Miracle!

Early this morning,  Mayleigh had an extremely low blood pressure and her heart was afib (irregular) and extremely fast. Her blood pressure was 73/45 at it's lowest point and her heart rate was 180 bpm. The scariest part is the doctors have no clue why this would of happened as there were no changes being made at that time. When we got there, they explained everything to us and we were actually coming to say goodbye and get her status as we were contemplating going home to get some supplies. They have reassured us that "now is the time" if we were wanting to get things done or go back home. Needless to say we bailed on that idea and are staying put. Even though we are staying 15 minutes away vs 4 hours, it still feels like forever. Last time we left she was admitted to ICU and it's a nerve wracking feeling having to drive that far and know your child is having trouble.
We really need her white counts to come in so her body can begin healing. Today they doubled her fillgrastim shots that stimulate the stem cells. She's been getting this since day 7 and so far her counts haven't budged. It was her first double dose so hopefully this will help to kick start those cells to go to work. They have also found a virus present that for most of us would not be an issue but because she's neutropenic, they will need to keep an eye on it closely.
We had a huge support system in my mom and my footbag family but my mom had to return home and the footbaggers have all went their separate ways. We are beyond stressed and our minds keep wandering but mostly we want to get that call that her counts are coming in and for that we need a miracle.

If you have a second and can pray/send positive thoughts /vibes/energy for this to happen we would greatly appreciate! Thanks to everyone who have been thinking of us but extra special thanks to my mom who has been here from the beginning (and hated to leave), and my footbag brothers who made me feel for a few hours like everything was just fine and everything thing will be alright. <3
Thank you for listening, thank you for caring! Hearing it never gets old either :)

Lost

Mayleigh will be on a ventilator and dialysis for what we have been told could be weeks. We are so overwhelmed and have no idea what our next steps are. The doctors still tell us this can be reversed but it's going to take time. Her kidneys, lungs and liver have all taken huge hits and they are doing all they can to keep her sedated, out of pain and comfortable. It's so hard to not get to talk to her and to see her like this. It would be my worst nightmare to have this happen to myself let alone have to watch our only daughter go through this. I know we have lots of people praying for her and that have put her on prayer chains and sent her positive thoughts etc but it seems it's all been for not at times. No matter how hard we try and B Positive, something has always altered our course and pain and suffering have been the result.
We are devastated for her and hearts are aching badly. We know we can't just stay here for weeks on end but how can you leave your child and be 4 hours away at a time like this too... It's a lot to take in and I just pray her white counts come in and she engrafts before we have to make the decision to go back home and regroup. Camille is running short on supplies and the school year is quickly upon us and I have so much work pending. It's all too much to comprehend and prepare for. We just want to hear her voice again! <3

Can't catch a break

Shortly after being moved back to 14k, Mayleigh started having issues with breathing. She wasn't able to control or slow it down and by morning they were sending her back to ICU. Being that it was midnight, she didn't even get a chance to see the view from her room.
In the 30+ hours that have followed, Mayleigh was put on 100% oxygen and had a catheter installed to begin dialysis to remove the water and toxins that have built up inside her. Her respiratory rate had been at or near 60 breathes a minute for nearly 30 hours. Her poor body is exhausted and if it weren't for the oxygen she probably would not be able to keep up on her own.

The doctors have had to now use intubation due to Mayleigh's inability to calm down and trying to rip the oxygen from her nose. She has become delirious to the point she doesn't even realize where she is or why they are doing this. It's as if she is a prisoner and is just wanting out.
There is huge risk to this for infection due to her having no immune system. Having Jon Anderson as her doctor has been a gift from God as he is an incredibly compassionate and amazing young man. He truly makes us feel comfortable knowing he's in our corner.
We again are scared out of our minds. We can only pray that this will give her some much needed peace and let her rest as her body recovers. Engraftment can still happen and push her recovery even faster so we keep hoping this will happen any time.
We appreciate everyone's thoughts, prayers, comments and concerns. We are so grateful for them and are using them to heal our hearts which are currently breaking for our daughter.

A Room With a View

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

ICU

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!

B Positive and Engraft!

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

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