And now a year later...
5.25.10 Camryn went to clinic almost a year post-transplant.
Last year we were embarking on a journey where a year seemed almost too much to comprehend and now here we are...and truthfully it is a miracle that Camryn is where she is at.
Today at clinic Camryn saw Dr. A and her nurse practitioner, she is always happy to see their familiar faces. Both Dr.A and B said that Camryn "looked great", honestly in the world of pediatric cancer most doctors can tell something is not right just by looking. So it is very encouraging to hear that Camryn is looking wonderfully. It was determined that Camryn could discontinue her "swishy" medicine as she calls it, so that's one med down...only roughly 5 more to go. Jason asked about her other meds as once a patient gets to a year sometimes some of the meds are lessened. At this point all the other meds continue as most of them are tied to the fact that Camryn is currently on an immuno-suppressant (tacrolimus); so those meds won't be changing for awhile.
They also discussed the echo that Camryn has yet to get. It was concluded that once Camryn changes medicial groups it will be much easier to get authorizations, so we are hopeful that in June the echo will get done. And maybe just maybe those results will be positive and that would led to an ending of the nightly Lovenox shots which as of tonight have become a nightly ritual...yes, 365 shots. Far as labs Camryn's labs look great, her numbers are nice and strong and just where we'd like them to be. In fact her ANC is at 2300...so her immune system is working, building and growing. Next month her doctors will run extensive blood work to check Camryn's B & T cells and see for sure just how strong that system is. Those results would then impact potentially starting immunizations and such.
A long journey awaits....a long journey complete.
If you were to ask me a year ago when I walked out of Camryn's room for the first time to come home without her for another 35 days, if I thought she could do this again, if her body could handle this, if we could handle this...I probably would have mustered an answer of yes, but deep within myself I did not know. A bone marrow transplant is an extensive medical journey, it is difficult on a patient, on their body and the outcomes are not givens. Having a child with cancer is an extensive emotional journey, it is difficult to parent the child, it is hard to know what is okay and what is not, all the while hoping against hope that your child can do it again. That she can fight with all she has to pull through.
And yet you have a healthy child...a child whose life is turned upside down as well. A child who knows all the medical things as well and lives with the realities that their sister may or may not be coming home. Even this morning as Camryn and Jason drove away Wyatt asked, "Is she coming home?". Yes, even a full year later his heart knows...that nothing is a given.
We are incredibly grateful for the year we have had...
This is not how it should be
This is not how it could be
This is how it is
And our God is in control
This is not how it will be
When we finally will see
We'll see with our own eyes
He was always in control
And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day
This is not where we planned to be
When we started this journey
But this is where we are
And our God is in control
Though this first taste is bitter
There will be sweetness forever
When we finally taste and see
That our God is in control
And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God
While we're waiting for that day
We're waiting for that day
We'll keep on waiting for that day
And we will rise
Our God is in control
~ Steven Curtis Chapman
1 comment:
Congratulations on this anniversary! You guys made and you are such an example to those around you. May God continue to give you even more strengths as you walk this road.
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