Thursday, August 15, 2013
The Difference a Year Makes
One year....365 days.....ups, downs, tears, joy, regrouping, reclaiming, but best of all.....rejoicing!! We've reached a major milestone, our one year appointment. It's hard to believe that just one year ago we were being admitted for our second bone marrow transplant.
In the Clinic, I met a few parents new to their diagnosis and the routine. The Fishbowl was filled with kids receiving chemo therapy and transfusions. I was immediately flooded with thoughts of the two and a half years of that rotation. I encountered a parent overwhelmed with concern as their Medical Team gave them the news that a Bone Marrow Transplant is their next viable option. We had moments to talk and embrace, but I look forward to being able to share (from the other side of the coin) our experience to help prepare and align their expectations. My heart was also heavy as I noticed the frailty of life in a few of the young patients who have been fighting these illnesses with all they've got. I sadly learned mere days after this visit that one of those precious lives would suffer no more. It's unimaginable and my heart grieves with this family.
Prior to this appointment we'd received a letter that the Head of Peds Hemoc would be leaving VCU. Reading this letter made us sad. Not sad for ourselves but for the hospital. Dr. Godder is small in stature, but very matter of fact and she shoots it straight. When your dealing with life and death of a child, you want 'shoot it straight' and give me all the variables (at least we did)! This woman is a wealth of knowledge and wisdom. What are the odds that one of the best Physicians in this arena would be 'in place' during our diagnosis and active fight to partner with us and be the overseer of our daughters care? We're sad to see her go, but are happy she'll be closer to her family and continue to be a major force and resource doing something she loves...."bone marrow". It was bittersweet to have our last appointment with her just mere days before she leaves. She made a point of coming in to have her appointment with Mireya even after adjusting her schedule to see the remainder of her patients the week before.
Mireya had to have an EKG and a battery of tests/labs completed to monitor her progress and success. We'll be seen every few months for the next year to ensure Mireya's progress is staying on task. Today we had an unspoken release. The release of emotion likened to when you had your first child and the Doctor handed you a healthy boy or girl and you were overcome with tears and emotion. Mireya is even more beautiful than the day they handed her to us AND (despite it all) her health has been restored. Reya has been taken off all medications! She will be able to start getting her immunizations and go to school with no restrictions. There are several objectives and areas we have to be watchful over, especially given the medications and treatment she's received over the last few years, but we're believing even the slightest of instances will not be on our radar. We continue to stand, trust, believe, and confess that her body will function as it was created and designed without incident.
We have met some amazing families and people. It takes one to know one (and to understand)......our circumstances and situations may be different, but we're all fighting for the same thing. I'm looking forward to continuing to to serve, support and be an advocate for care and to those organizations/foundations/businesses doing amazing things to make a difference in the lives of others.
Thank you for your love, support, prayers and any/everything that was done to lighten our loads and minds during this process. Life is good and our best and brightest days are ahead of us.