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