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.