And we wait...well after the nightmare set back we had...the steroids seemed to be making a difference. He started to feel better...fluid and swelling was going down, appetite returned and he let me back in the room again....thank god! Now his 0.2 level went back down to 0.1...they told us this was normal as his levels would go up and down. At that point we didnt care as long as he was feeling well, we would let things happen naturally . Everyday I would wait for the little paper we received in the morning to see his blood work. ..still 0.1! If it wasnt my night I would be up at 4 am waiting for Sheldon to text me the counts. If it was my night at the hospital at 6 am the nurse would walk in his room with it and I would be up like a dart hoping for a change. We were now in and around 25 days with no change.... I feared failure. The docs every Monday would gather in front of the patients room to brief each patient...I went out to listen...they called him by his full name and it seemed so cold....they wanted a repeat bone marrow to see what was happening with the cell production. They wanted to start GCSF...this was a drug that boosts cell production....but the bone marrow was first...again we would have to watch him be put to sleep scared and crying...it would never get easy...again as usual he breezed through and we would now have to wait the day for results. I will never forget waiting...my heart pounded out of my chest for 8 straight hrs...as the docs would pass and shake their head saying no news yet! All I could remember was the initial diagnosis....it took forever...was this bad news too??? it was about 5 pm when the docs walked to our room....Sheldon and papa were in with him at the time...I sat in the family room frozen, I didnt want to know!!! I waited all day and I now didnt want to know. Papa walked in the family room and said I think it looks good! I ran down to his room and the docs were grinning ear to ear! They said his cells looked great...loads of healthy cells, now they would just need to spit into the blood and we would be in great shape! No sign of cancer...Finally good news! I cried of course and the total look of calm and relief on sheldons face said It all! Kel just sat looking at us like we were crazy...what was all the fuss about anyway! The next day they did give the GCSF and his counts did start to rise but the docs wanted to let things happen on their own...we agreed let his body do the magic! I would have sat in isolation for another 100 days if it meant he was on the road to a healthy life again! We were now close to day 40 and his levels were slowly going up....very slowly! He boggled the docs...they had never seen this before and couldnt give an answer of why it was taking so long...It was now close to July and I missed jonah terribly...colette did bring him him to Toronto for a few days but I wanted my family togther....it was killing me. Kellen was feeling awesome, I felt torn...should I go home to get Jonah or should I stay? What if something goes wrong when I leave? What about jonah...I have never felt so guilty in my life....I felt like suck a terrible mother....
Posted on: Mon, 13 Oct 2014 21:07:17 +0000