I'm sure anytime a family receives news that their child has this devasting disease they go through a moment of absolute disbelief. You just can't imagine that this beautiful, seemingly healthy, child could be stricken with such a horrible illness.
As we were sitting in the ICU hearing the doctor's words, I could only think, "this is just not possible!" The first call I placed was to my sister, Kim. I knew she would understand exactly what was going through my mind. I could see the faces of the people around us, I could hear the words, but I just couldn't put things in place. I literally could not breathe. I wanted to be strong for Sheree and Greg. I couldn't let them see me fall apart. How we ever got through that morning I'll never know. I don't want to re-live it to try and figure it out!
Kim and I were born 15 months apart. I was the oldest and she was the second of six. We've shared just about everything during our lives, from a bedroom & childhood illnesses to our own weddings & pregnancies. We've been through the weddings of our children and now are having grandbabies together. But as Kim said to me that morning, "this is something we were not supposed to share."
Kim's 3 year old granddaughter, ViviAnne Grace Bohannon, was diagnosed with ALL in July of last year. She is 8 months into her treatment program. She has been through the first two phases of treatment and is now in the maintenance phase. ViviAnne had just left the hospital a few days before CJ was admitted. (Believe it or not, she was in room 738 during her last stay there - the room CJ is in now.) She was hospitalized while she recovered from a bout of RSV, a respiratory virus. This is a dangerous illness for a cancer patient undergoing chemo treatment so the doctors take every precaution.
Since ViviAnne had been ill, her counts have been down for the past few weeks and she has been unable to receive her regular chemo treatment. She had an appointment on Friday to have her blood checked. Her counts were back up so she was able to recieve her normal treatment. The clinic where ViviAnne receives her treatments and where CJ will receive his is located just across the street from Kosair. So, on their way home, ViviAnne, Kristen (her mommy) and Aunt Kim (her grandma) stopped by to check in on CJ.
The doctors and clinic staff are all aware of the connection between ViviAnne and CJ so they gave ViviAnne a message and a sucker to take to CJ. The message was - the doctors are nice, so CJ should let them look in his mouth. The sucker was just for fun.
We were a little concerned that they may not be able to come into CJ's room to see him since he had been in isolation since Monday because of his mouth sores. But since he finally agreed to let the docs have a peek inside his mouth and it was so much better, he was removed from isolation and ViviAnne was allowed in his room.
ViviAnne saw immediately that CJ had a port. She showed him hers and he let her look at his. He was a little surprised that she "looks like a boy". ViviAnne began losing her hair in the early stages of her treatment. She finally lost the last of it just before Christmas. CJ hasn't seen her since then. I don't think he really understands yet that he will soon lose his. I'm hearing rumors of a head-shaving party at the hands of Aunt Christy soon after CJ comes home from the hospital. If you are interested in participating, I'm sure Christy has plenty of razors!
If you would like to know more about ViviAnne and her diagnosis here is a link to her blog:
http://www.viviannegrace.blogspot.com/
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