Readjusting our self-imposed expectations
After today's update from Charlotte's doctors, it has become clear that we need to revisit and review our expectations and really our priorities at this time as it comes to Charlotte coming home. It's honest and justified that we want to bring our baby home and all be together again as a family. But the focusing in on that being the "immediate prize" is becoming disheartening when what we need to be more focused on is getting her body back to the healthiest state it can be in so she can continue round 2 of Chemo, and therefore keep fighting and killing this cancer.
When the doctors told me this am that they were not satisfied with the results of the heart medication she began yesterday and they wanted to try something else, I was devastated again because it meant we still can't come home. I now realize that is selfish. We want to come home for the sake of our family and also to help lift her spirits and bring her familiar comforts. After digesting this news, I realize that the notion of coming home needs to be less emphasized as a priority right now. Helping her heart rate come back down to a safer level so that IF her body reacts to chemo 2 in such a way that it rises again, she will have enough reserves/space for her levels to shoot up. They can't get much higher from where we sit. And although the medication did help some, I can even tell it's not enough.
So, they have sent away for some more tests and we await a new med to try. And in the mean time, I wipe away tears that do not need to be cried because as our friend Kelly kindly reminded me, Charlotte's home is where we are. And we can bring silly, goofy, tender, fun, loving moments here just as good as home. We must keep our hearts light when we can and gather our strength for round 2 which will begin next week. And will pray that she will be healthy enough to start then because ultimately that is what matters. Helping her fight this fight no matter where it needs to occur. And we can celebrate her white blood cells continuing to increase wonderfully (over 1800 today!!) thanks again everyone...the updates will become less and less once we get this under our belts but we are feeling you cheer her on for sure❤️
Sorry for the disappointment but it is only a postponement of her coming home
ReplyDeleteYeah. 1800. Way to go Charlotte
It will happen Jen.
Love you
Pops
Lots of love and prayers!
ReplyDeleteWell, the new light at the end of the tunnel will be a nice safe heart rate and a healthy Charlotte ready to face round 2 of chemo to beat this cancer. We are all here to root you on as you face each hurdle and we will cheer you on as you get over those hurdles. Love, love what your friend said about home being where your family is...so spot on! We will focus all of our thoughts, prayers and energy on sweet Charlotte's heart rate right now. Way to go with those white blood cells, Charlotte. You are fighting hard girl! We can never get enough updates. We want to be there for you to cheer you on as much as we can. We love you all!
ReplyDeleteI'm sure the goal will change many times as you continue on your journey, but no matter the goal, you will all get there as a family, and we as your village. We are pulling for you every step of the way. Keep going strong Charlotte! We love you.
ReplyDeleteWe really enjoy all the pictures and Charlottes beautiful smiles! Happy to see there are some happy times. We continue to pray for doctors wisdom and the progress that Charlotte needs to move forward. Also for comfort for all of you! Sure do wish we could just come to NC to visit Charlotte and love on her! For now just give her lots of hugs and kisses for us please! We continue to pray for doctors wisdom, and for Charlotte to progress to the levels that she needs for future healing. We love you all. Debbie & Chuck XXOO
ReplyDeleteI'm sure it's hard to reframe your goals but yay for white blood cells!!!
ReplyDeleteHome is where the heart is and I'd say the entire Reynolds Family and extended Village is "home" with you in that hospital. Love and prayers coming Charlotte's way!
ReplyDeleteim so glad she is tolerating it better:) She still has that adorable sparkle in her eyes, and is so cute playing with her brother and sister! I see her hair is getting thinner. Time for fun wigs! Maybe that will bring her little smiles... I keep picturing her and Brian in pink matching wigs:) Lots of deep prayers always heading your way, to that brave, sweet, fighting little girl of yours...
ReplyDeleteThanks KC. She may pretend play with a wig or two but she is so against anything on her head haha. Even a tiara!
ReplyDeleteI'm trying to win the wear a hat on sunny days battle