Grace: A Child’s Intimate Journey Through Cancer and Recovery
From his Caringbridge site:
..”On Friday we went back to the hospital for our out-patient chemo, Vincristine, and blood counts. I met 3 newbies there and it never ceases to make me remember the shell-shocked days when we were new. It is amazing how much things have changed on the ward after being there for so many years.. and how many new faces walk the hallways. At one time, I knew everyone there. At one time, I could call to request my own favorite room number, right next to my friend. At one time one room would call the next room on the phone to whisper that a “newbie” had just arrived… and all of my friends in my first circle of friends are gone. Out of nine of us, Vinny and one other Survivor are the last two alive. And Vinny is one of the last few out of my 2nd circle of friends… and now I am somewhere in the middle of making my 3rd round of friends. The other day one of the doctors joked that Vinny is the most popular child they have and everyone asks about Vinny. I said no, Vinny is just the one who has been there the longest…… .and in a way, I am so grateful that he is alive and still is well enough to go in for chemo almost every week… but sad enough to admit that 4 1/2 yrs is a very long time and not such a fun way to live with the constant worry, the stress, the pain, the sadness and fear of the future.
But we keep making plans and taking baby steps to look forward to little things so we can enjoy what we are given. On Friday I asked again about the breathing… he had been wheezing and breathing hard for 2 days prior to chemo. But Vinny wasn’t breathing hard at the moment that the Oncologist listened to his lungs and chest. There is more blockage, of course, in the collapsed lung with the tumor, and breathing is more clear in the one lung… but nothing we could pinpoint Friday at clinic.
On the way home from the hospital, we had our usual Sponge Bob Popsicle from Toys R Us (the only place that sells them), and when we got home, I called clinic for blood count results and found out that Vinny’s ANC was horrible, he is neutropenic and not allowed out in public, and can’t be with people until he repeats counts tomorrow. His hemoglobin was great (10.6) but platelets were 23. They transfuse at 20. They said to watch for bleeding, if any bleeding of the gums or nose, we would have to bring him in immediately. Bruising is bad and legs hurt. They were not sure if counts are climbing up again, or going down so we will go to Dr. Rickett’s office tomorrow for more counts and hope that platelets rise so we can skip a platelet transfusion.”
http://www.caringbridge.org/visit/vinnydigerolamo
If more people knew about Vinny– if more people knew the true, day-to-day stories of children fighting cancer, we would have an army of people supporting childhood cancer research. If people could feel a fraction of the suffering, cures would be right around the corner. I believe this with all of my heart… and so… I am grateful for everyone who takes the time to open their heart enough to take time to learn. With awareness, change will come. I wish we could rewind at the time when “the change” comes, so we could recapture the beautiful lives of the children we have lost to cancer.
I wish this could be true. Since this is a wish that cannot come true, my wish is to make a difference for the children who are now fighting. My wish is to make it so there will be a day– soon– where children will not have to fight. This is why I wished for a Make-A-Wish Hope Tour.
This brings me to another Hope Tour update and another huge thank you to Make-A-Wish AK/WA for our final Hope Tour stop in Washington. Mom and I arrived at Kennewick General Hospital on a Sunday morning. This was not a “scheduled stop,” but Amazing Meredith at Make-A-Wish arranged for this visit. When I walked in the doors of the hospital, it took a moment for what I was seeing and hearing to register. When I saw signs that read, “Welcome Melinda,” and heard the clapping, I realized the warmth and love and welcome was for me! In a billion years, I never, ever, would have expected anything like this! The warmth of the staff at Kennewick General Hospital heated up to a fire-y glow when I walked into their cafeteria and saw a beautiful and colorful cupcake welcome display.
Kennewick General Hospital Welcome
Kennewick General Hospital Cupcake Welcome
I had the opportunity to speak with their staff, eat cupcakes (yum– by the way,) give away books, and have interviews with a couple of news stations. I am always very, very grateful for the opportunity to raise awareness for childhood cancer in the news. The people of Kennewick, WA were wonderful for helping me do this! Thank you to Dan Thesman, KVEW (ABC) and to Jane Sander from KNDU/KNDO (NBC) for your support.
I was able to visit with a couple of patients; I will always remember our conversations. My time with patients on my Hope Tour is the core of my wish. Wrapped tightly around that core is the desire to help raise awareness for childhood cancer. Thank you to Make-A-Wish and to everyone at Kennewick General Hospital for helping to make my wish come true!
I LOVED meeting everyone at Kennewick General Hospital– Trish– and Jane in the background
Thank you to Lisa Teske and to Nicole for all you did to make my visit to Kennewick General Hospital such an enjoyable and meaningful time!
KVEW TV Kennewick, WA 7/1/2012
http://www.kvewtv.com/article/2012/jul/01/kgh-helps-make-wish-patients-dream-come-true/
Kennewick, WA 7/1/2012
http://www.kndu.com/story/18928222/cancer-survivor-author-visits-kennewick-general-hospital
Kennewick, WA Tri-City Herald 7/1/2012
Tacoma The Tribune News 7/1/2012
http://www.thenewstribune.com/2012/07/01/2201700/make-a-wish-recipient-visits-young.html
When Mom and I left Kennewick, we left filled with all the love that the staff had given us. I left with a new, special knowledge from the patients I had the blessing of meeting. We left with anticipation that the journey ahead would bring new hope. We surely left Washington ready to share the hope in our hearts. When we plopped down on “our” beds that night, we found ourselves in the state of Idaho…
Idaho!
Hope Tour Video Day 15
http://www.youtube.com/watch?v=2hgRg2k0kX0
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Melinda Marchiano 