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