Thursday the 4th, Mayleigh was supposed to get her pet scan done. She was awakened at 4:00 am to give her something to eat to ensure her blood sugar would be in the proper range but for whatever reason she dropped to low and was not able to get it done. She also was in severe pain as they did not give her any prednisone thinking this could help with blood sugars. This was very disappointing being that we thought by getting it done on Thursday we might possibly have some info on Friday. This would not be the case. Her blood sugar was in the low 70's and therefore they had to postpone it till Friday. This would mean she would have to be on a 15 hour fast in order to fit both the pet scan in and the bone marrow biopsy (with all things going as planned).
On Friday morning, Mayleigh was again monitored closely and given something to eat to ensure she wouldn't drop low. She was in the mid 250 range around midnight and by morning she had dropped to 120ish which allowed them to do the test without issue. The only problem was that the scan was at 2:30 pm and the bone marrow biopsy was at 8:00am. Needless to say, as we have experienced time and time again, the hospital runs on many different elements and transportation seems to be the bottleneck. She finally got to the biopsy around 9:00 then finished up around 10:00. She came out of sedation and was shocked to know it was over. She recalls telling the doctor she was wanting a chicken sandwich and if it would be ok and he said go ahead and eat it and next thing she knew she woke up lol, I guess allot of patients talk in their sleep about food but I understand considering your fasting normally.
After waiting another hour to be moved towards the pet scan, they told her she would have to wait an hour and a half for the dye injection and then up to another hour for the scan. After an additonal hour delay, she finally was able to wrap up but again transportation created a bottleneck. She didn't get back to her room till almost 5:00 pm. Needless to say she was starving after going nearly 20 hours without food. Thankfully she was able to go get some and when we came back they informed us that she may have the opportunity to go to the Ronald McDonald House and stay the night with us and be discharged.
After speaking with her PA that evening he agreed that it would be fine if she left and thought her blood counts and overall situation was fine to be released. We were blown away. We were happy but hesitant given that it was all happening so fast. We wanted to make sure she wasn't going to be in pain and having major issues coming off prednisone so suddenly and she did after all have a bone marrow biopsy under sedation as well as chemo administered to her ommaya reservoir. They assured us that she should be ok, gave her enough meds for a small country and set her free.
We were speechless... To have gone through so much in the past 4 months and for it to almost sound like we were done was beyond mind blowing. We still are waiting for the official results from the bone marrow biopsy but all along I've felt positive that we were going to defeat this and I can't let any other thought get in the way. To have seen her go through so much in such a short time span has made my mind swim and the thought of what has been on hold has been furthest from my mind up to this point. Nothing in this world matters except for the well being of our daughter. It almost feels as if I've lost all knowledge on anything except for how to love and support my family.
For the past 3 weeks we have eat and breathed OHSU the hotel, OHSU the hotel. We've had some breaks in between with Ian being around, as well as my mom but other than that I felt as if we were in a time warp between sleep and hospital. All along, Mayleigh felt like she was being held hostage and time could not go fast enough. For 33 days she was a trooper beyond words. She endured pain, loneliness, solitude and fears I cannot fathom for myself yet she did not waver or let on that she had any doubts that she was going to defeat this. I can only believe this strength has come from my wife as she has endured more pain than both of us. She has had 14 surgeries in her lifetime and had to give herself insulin shots at the age of 9 for type 1 diabetes. I screamed bloody murder at the sight of a needle and remember crying like a baby if I knew I was gonna get poked so I know she has learned coping with pain at a much higher level than I could ever dream. The bone marrow biopsy alone will haunt me for a while and yet she's had 2 of them as well as a port in her head and chest, biopsy of her head and 2 of her parotid glands. She has been poked and prodded more times than I can count and she is finally home and with her fiance getting a second chance at life. It's very surreal, humbling and exciting and none of this could have been possible without each and everyone of you reading this blog and putting thoughts, energy and love into our daughter and our family.
By next week we will have our answer on whether she is in remission. We take this word with a grain of salt as it has no guarantees for her future. What we can guarantee is that she will most definitely have a new outlook on life and realizes how fragile it can be when taken for granted. I think we all have vices in our life and I believe the one that is most accepted and ignored is the foods we put in our body. I would be a hypocrite to say I eat my words. I am guilty of life's pleasures and food has a grip on me more than I would like it to. But with so much sickness, cancers, autism, auto immune etc. these days, it's hard to justify any other reason but what we put into our bodies as being the culprit. Food is an addiction like no other and it's easily acceptable since we all need it. But how quickly things can get away from us as we indulge and live to eat. My hope for our future is simple and my wife has said it time and time again to us. Someday, I hope we cant eat to live.
Being home has been bittersweet. We arrived around 4pm Saturday and quickly noticed a slight stench upon entering, not to mention our dogs licking us to death. This was by far the longest we had been gone from them. I ventured to the fridge to take a peak and I noticed it blinking which meant only one thing. The power went out and the fridge didn't get reset.. OMG.... 68 degrees and the smell that blasted me about knocked me out the back door. Not to mention a few flies that blew past me.
I don't know when it went out but it had to have been a couple days and good Lord.. It was atrocious. Needless to say we had to dump everything in the fridge and freezer. All my precious smoked chicken, hot dogs gone.. All our condiments and even the 5 year old jelly gone. We had to clean house in a bad way!
Oh well, at least we have our hot tub (a Mother's Day present when we first moved here in 2006). Our backs had been ailing us for many a day without having the comforts of our own bed. The hot tub has given us both relief from time to time and there was nothing else from our minds after a long drive home. I had unplugged it while gone so I went out to put the fuse back in and fire it up. It started up and I cranked the heat and a couple seconds later a loud pop. I thought it was a jar that Camille had dropped but she assured me it wasn't. I checked the breaker and sure enough it had blown. I also smelled smoke. This prompted me to reset the breaker and try it again like a dummy. lol. Again more smoke and another pop... Allot more smoke :\
I'm not sure to what extent it's fubar but it's definitely not going to be enjoyed in the near future. Unless anyone we know is a hot tub repairman/woman :D Hopefully it's just a blown fuse but it didn't sound or smell very good.
Needless to say we were not having much luck being home already but none of it truly matters as we look to the future. Mayleigh begins her consolidation phase on August 15th in Eugene and we will continue her treatment to keep this disease away. I wish we could say our journey is over but it has just begun. With all hope she will have completely beaten cancer in 2 years time.
Thank you again for following our journey. I hope it has been informative as well as entertaining. I also hope that someday this may help another family discover a misdiagnosis as we did. I will continue updates as often as we can and to provide any additional news as it comes in. Mayleigh plans to enjoy the next 9 days of her freedom figuring out her agenda for the next couple months which will be driving to Eugene 4 times a week. Camille will be back to manufacturing Framehuggers and Headhuggers across the world and I'll be heading to work tomorrow with only a month left to get things ready for the new year. It sounds like we hired a new tech so hopefully we will get things back up to speed in no time.
Have a great week everyone and thank you for your love and support. We could not have done this without you!!! <3
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