“We are so thankful to be starting round three on schedule! I had a wonderful surprise during round two, I came to the hospital at 630am to find out that Rowan’s ANC (the number that basically tells us his immune system function) had jumped from in the 70s to 304! This was a huge jump up in a 24 hr period. After round one, Rowan’s count recovery phase took two weeks longer than it should have and the doctors told us to expect that his count recovery would continue to get longer with each round. At that point we were unsure of how long Rowans treatment course would last, by adding extra weeks at the end of each cycle a four month treatment plan turns into six or eight very quickly. So, the news that Rowan’s counts were recovering after round two was a great!
Our drs now attribute Rowan’s slow count recovery in round one to his extremely heavy tumor burden which basically means that he just had so much cancer everywhere. Another surprise was on our way at the end of round two. Most drs would have had us stay at the hospital until Rowan’s ANC was firmly established above 500. The dr that was, on that day is a firm believer that being home is good medicine. Within hours we had discharge orders for Rowan! The discharge scramble began and we packed up the hospital while our wonderful great falls office manager found us 98 dollar tickets each to fly home. Our dr cleared us to fly commercially but the germ factor on the Airplane was very stressful. We scoured our seats with Sanitary wipes and watched anxiously for anyone who looked even a little bit sniffly. We also had a few TSA run ins with people wanting to pat Rowan down or open his sanitary medical supplies to bomb test them. All I can say is no one touched Rowan and no one was arrested but it was not pretty! All in all I think next time I would take the 14 hour drive with three kids.
Regardless, in a few hours we were looking out our home window at our beloved Highwood Mountains. It was paradise to be home. The mountains are green and lush and bursting with wild flowers. Thanks to our wonderful friends in Highwood, our crops look strong and healthy. The next week was spent soaking up each other as a family and treasuring time with friends. Every second is a priceless flashbulb memory. Rowan loved being home. He crawled Around the house like crazy following his sisters around. He started “talking” a lot more and cruising around furniture. He even put a little bit of chubbiness on his legs.
The week flew by. As I was packing to come back to the hospital I kept seeing the faces of friends we had seen and heard their words of encouragement in my mind. I carried those words and images with me as I held a crying Rowan (who had been fasting for six hours before his spinal procedure) as we walked back though the hospital doors. I heard your words of encouragement posted on caring bridge over and over in my head. All of your love and encouragement overflows in hugs to rowan, strength for these long days and love and patience for my girls.I only wish we could show you all how much we appreciate you and how much you are helping us though this.
Rowan has had some vomiting with round three but so far we are keeping it at bay with a lot of heavy hitting anti-nausea drugs. He really is doing quite well so far. Round three is called intensification because he receives a much higher dose of two chemotherapy drugs. Our main concern right now is his g-tube site. It is very red and drs are concerned that it may be infected which could be very serious as Rowan’s blood cell counts will be plummeting in the next few days. There is a chance it is just severely irritated and we are praying that is the case.
We found out today that Rowan has zero blasts in his bone marrow!!!!! He does have cells that are still carrying the inversion 16 marker but that is expected at this point.
We have been hoping to run into a couple that we has become friends with on the floor. Their little three year old was admitted about the same time as rowan and we have enjoyed their company and loved their little one. We got the tragic news today that little Riley passed away while we were home in Highwood. We saw them everyday on the floor and it seems so empty without hearing Riley going down to the playroom. We are grieving for them constantly. It is very hard to think of Riley not being next door to us and knowing that she is gone.
Life on the seven floor is so fragile, Rileys death touches so close to home that it is hard to process. It’s so funny that even though we saw Riley’s parents everyday we never knew their last names. We do know that we love them and we are praying for them.”
|From My Sketchbook|