My daughter's struggles. Paige is fifteen. Fifteen--and at this point in her recovery cannot go anywhere but home or clinic. While her peers are busy being 'normal' teenagers, Paige hasn't yet had that privilege. Originally diagnosed at the age of thirteen, she has spent her teenage years so far battling the beast called childhood cancer. Her time has been spent in hospitals, not in the hallways of her school. Her circle of friends is much smaller, now mainly consisting of those fighting battles similar to hers. I have seen the hurt in her eyes when people who said they'd visit never did. I have watched her look through photos of school events and listened as she wished aloud she could be part of those things again.
Just the other night, my girl held back tears as she told me she was tired of being sick, of her body hurting so much, of being "damaged." Damaged. It definitely isn't her usual state of mind, but that's where she was at that moment. I'm always trying to get her to let me know what she's thinking about all of this, even though it breaks my heart sometimes. She needs to vent--we all do. Thankfully, God seems to give me the right words exactly when I need them. I immediately thought of the Mercy Me song, "Flawless," and quoted some of the lyrics:
No matter the bumps, No matter the bruises
No matter the scars, Still the truth is
The cross has made you flawless
I went on to remind her that God doesn't see her as damaged--not in the least. She is a living, breathing miracle, and we pray every day for complete restoration of her health. I may not know the plans God has for her life, but I know they must be big considering the mighty work He is doing here.
Our family's trials. This is a long road. We knew we were in for a bumpy ride when Paige was first diagnosed, but we made it through the first leukemia battle with everyone still standing. Battle number two began with a sneak attack and necessitated immediate action, requiring our family to be separated for weeks at a time. Transplant and subsequent re-admissions kept us separated even longer. We were reunited a few weeks ago and are still working out the kinks of being under one roof again. It's been a little rough at times, but I wouldn't trade it for anything.
Not only did the separations make it tough, having our income cut in half yet again makes things even tougher. I was on unpaid leave for almost a year following Paige's initial diagnosis and actually returned for a few months last year. My most recent leave of absence has expired, making it necessary to resign from my job. Paige is still at a point where she requires round-the-clock care. From IV medication administrations to help simply getting her from one room to another, the days are pretty full around here. Things were tight and have only gotten tighter, yet God has met our needs every step of the way--and I have no doubt He will continue to do so. His timing is always perfect.
Connections with medical teams. Once Paige hit remission and was a go for transplant, we were "traded" to another team. To say it was difficult leaving the comfort of the oncology floor after the relationships we'd formed there is quite the understatement. Our family came to love and admire every single member of our team--from our oncologist, nurse practitioner, and social worker to the nurses and patient care assistants. We were with these people the better part of two years, and I have a hunch they love my girlie just as much as she loves them. In fact, they continue to be part of our TCH family even now that we are officially part of the BMT world.
Though we joked with our oncology team about "ditching" us, we couldn't be happier with our BMT team. They monitor every single aspect of the transplant process, they are extremely thorough when reviewing counts and levels, and they are fantastic with individualizing the treatment regimens of their patients. This whole group is pretty wonderful too--from the inpatient staff who got to know us very well over the course of a couple months to the clinic staff a few times each week. I can't begin to say how thankful I am for these people who genuinely care about the kiddos and their families.
Connections with other families. We have had the privilege of getting to know other families who were themselves thrown into the world of childhood cancer and/or bone marrow transplant. For many of us, it doesn't take long to strike up conversations about our children's battles. While there are often similarities, every child's fight really is unique. Allergic reactions. Side effects both temporary and long-term. Chemo working. Chemo not working. On the same note, families face different struggles. Some find themselves moving from their hometowns--whether temporarily or permanently--to be closer to their children's treatment center. Single parents juggle work and treatment schedules. This world sees a family dynamic second to none: No matter our own circumstances, we are there for each other--to listen, to cry, and to just be.
Our challenges may differ, but our goals are the same. We want our kiddos to be healthy, happy, and whole again. We want them to grow up to be nurses, law enforcement officers, princesses, astronauts--whatever they want to be. They just need the chance to grow up--outside the walls of a hospital, preferably. They deserve nothing less.
Lots on the mind. Even more on my heart. No wonder sleep doesn't come easily these days. I am looking forward to the day when Paige's health is fully restored. When we can look back at the struggles and continue to be in awe of how God brought us through every single one. That day will come--I just know it.
"...In the world you will have tribulation. But take heart; I have overcome the world." John 16:33