Happy Easter to all!
I love this day.
Easter this year is incredibly poignant to me. We celebrate this holiday to remember that the Savior Jesus Christ rose from the grave. His sacrifice made it possible for each and every one of us to overcome any trial or challenge we may have such as death, pain, sickness, fear or a broken heart. It also brings us hope that we can all rise from our personal darkness into the light of a brighter day.
I feel as if Willie and I are emerging from our personal tomb. I am so grateful for the improvements he continues to make each day and look forward to the new life we will build together.
His clinic appointments last week were uneventful which is how we like them! Lenny had some time off so we had Tammy who we met during the first week of radiation and haven't seen since Willie left the hospital. She couldn't believe how good he looks. She just kept staring at him and shaking her head in disbelief.
"You've done really really well." She said and patted him on the back. "I remember that first week when you couldn't stop throwing up!"
We assured her that we remembered that awful week too! Thank goodness that was short lived!
She agreed with our plan to go home next week and walked us through the next steps. Next Tuesday Willie will have a bone marrow biopsy and have his PICC line pulled from him arm. We get to move home for good on Wednesday, which is his birthday! After that we will check in at the clinic once a week or every other week until May 1st when we meet with Dr. Laport who is his transplant doctor. She will make all the plans from there regarding his medication and appointments.
He is still on steroids, but the dose is down to 30 mgs and his blood sugars are not nearly as high. He will stay on those for a good 6 months as they slowly taper down the dose. If the skin rash or gut issues return at any time, he will have to up the dose again. The steroids are keeping his immune system suppressed enough to keep the donor cells from attacking his own. The hope is that over time his cells will be able to live in harmony with the new cells without needing medication.
He is also taking Prograf to suppress his immune system and discourage GVHD. Lenny said to plan on continuing this pill for another 6 months to a year. Willie's immune system will be suppressed by these meds as long as he's on them so we are hoping it wont be for too long.
Our friend Casey, who got a transplant the same day as Willie, got some bad news last week that his cancer is back. We have been thinking of him and his family daily and keeping them in our prayers. He was re-admitted to the cancer unit on Friday to start chemo again. We have hope burning like a forest fire for Casey because his hope is our hope.
We have been so blessed with Willie's healing, but also know that everything could change in a moment. I suppose that is true for everyone on the planet, but the cancer world heightens one's awareness of mortality.
As for now, we move forward with our heads held high and our hearts full of gratitude and hope. We are still at the beginning of Willie's healing and have a long road ahead, but hopefully that hard part is over. The mortality rate for a bone marrow transplant is 40%, which means one out of every three transplant patients doesn't make it to the 5 year mark. I hate thinking of these stats because we have made too many friends now who have had transplants and I refuse to believe that any of them won't make it. I especially refuse to believe that we will be one of those stats.
That is simply unacceptable.
We have been told that this 5 year point is when they can say you are "cured." Until that time, doctors hesitate to declare anything. These are things we don't like to think about and rarely speak of, but it lingers in both of our minds.
I asked Willie the other day if he will ever be able to live without the fear of a relapse being a constant thought. He said he doesn't know about that and only time will tell. I know it is something on my mind constantly even though I try to deny it. I don't see a place in our future when the fear of relapse will disappear. There will never be a time when he will have a cold or flu that we won't fear it is something more.
Our life will never been the same after this, but I don't see that as a bad thing at all.
Because our life will be better.
We have learned so much through this trial of fire. It has molded us into better people, changed our outlooks and welded our marriage into an unbreakable bond.
I can honestly say I am the happiest now than I've ever been, not because our circumstances are perfect, but because my definition of happiness has changed.
To me, that is a miracle.
I hope you all have a lovely Easter filled with peace and hope for a brighter tomorrow. There is a light at the end of the tunnel for all of us!
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