Whenever I have gotten a cold, I could swear at times that I know precisely the second when that little germ bug flies into my body and lands in the back of my throat. That first little tickle, that first dryness and then cough of your cold sends the spidey sense to your brain and you instantly know that you've been infected. (who needs doctors,,,)
On Wednesday, Mayleigh was sitting on the couch watching TV. I had gone to get a drink of water when I heard her cough from the kitchen. Then again, and again. She had to get a drink of water to calm it down but after it was over... she knew... She was getting cold.
The doctors forewarned us but also reassured us that her levels were pretty good all considering and that she should be able to do most things with caution. She would be susceptible to getting sick and if she were ever to get a fever over 100 to immediately go to the emergency room. We have masks and have been grilled on the importance of using hand sanitizer and washing so we are doing the best we can when it comes to cleanliness. With colds though, it doesn't seem to matter how much you try to protect yourself; if your going to get sick, your gonna get sick. Unless you live in a bubble, there is not much to prevent this.
Last night (Friday the 12th) Mayleigh and Ian went to dinner. After they were done Mayleigh wasn't feeling well so she took her temperature. It read 100.1. She called us to let us know they were going to the ER and at around 10pm last night she was admitted to Bay Area Hospital. We assumed she would just be given some tests but they have since accessed her port to draw her blood and to keep an eye on her closer as she does present to have an infection of some kind. She has had massive swelling in her feet and legs and her left foot has a very concerning water blister that popped and an overall redness to her foot. We have been keeping this clean and wrapped in the meantime but I am very worried due to how swollen she is.
They put her on IV's where they are giving her an antibiotic as well. She has become neutripenic again and her white blood cell count has dropped significantly since OHSU so she is currently getting red blood cells to help raise her levels. I would much prefer she be in a sterile environment but I hate that she has landed right back in the hospital. We are staying confident that her immune system will do it's job and she will fight through this but none of us know anyone with colds so it's very concerning she was exposed so quickly. A trip to the grocery store introduces you to God knows what though and although she hasn't been going crazy, she has been to the store and trying to stay somewhat active outside of keeping her feet elevated whenever possible.
Mayleigh has also seemed different the past week in her demeanor. Lately she has been kind of down in the dumps. For good reason of course but something is amiss and I think it just all comes down to so much energy draining, painful experiences pounding her over and over again. She has had so much happen to her in such a short time I think it's starting to catch up to her and she's getting tired of not catching a break. She has also been experiencing non stop headaches and it's making it difficult to sleep or even concentrate at times. She said it's kind of been there the whole time but she never said anything about it till recently.
Through it all she has kept it a positive, painless, focused experience. SHE HAS. If it wasn't for her attitude in all of this, this blog could be written very differently and it's all because she has been so strong and never complains about anything even though it may be worse than it is. We feel horrible that our baby girl has to go through this and there isn't much we can do but just watch as it unfolds. But she has been our strength every step of the way and it's very sad to see this breaking her down.
I know we will battle through this but we need to get her home. She will hopefully be coming home to us when released where we can better keep an eye out for her. I want to know we can be more in control of her environment and she really needs help when it comes to the physical aspects. The chemo has done it's job in ridding her bone marrow of cancer but that has left her very weak and shockingly so. She has several times needed help with just one step and we have been forewarned it could get worse as it goes on with this treatment. She will be in Eugene on Monday for her first appointment with her new doctor at Willamette Valley Cancer Institute (as long as she's out of the hospital) and this will begin her 2 month consolidation phase, with chemo 4 times a week. This coupled with being off prednisone will leave her body feeling depleted to say the least. I'm personally not a fan of this and wish we could battle it with nutrition but at this point we are on auto pilot when it comes to this treatment. The docs seem to assure us she is on the right path so we will continue to stay the course.
As smooth as everything has been, we are trying to prepare for some difficult times. After all, having a straw in your brain, a tube in your chest and chemo in your veins has got to bring you down a little. I know it would be difficult to keep my spirits up on a daily basis for sure. But all we can do is still just take one day at a time and do our best to be there for whenever she needs us. It looks like she is going to be needing us more than ever so we are preparing for some new guests.
Thank you again for your thoughts and prayers. We would appreciate any and all energy and focus going towards our daughter to continue as she prepares for a difficult road. Every ounce of love is a gift and we are so thankful for it!
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