Cole's Journey

Thurs, July 24 - Sat, July 26 - The whirlwind continues in Boston. Each day since we've been in Boston we have gone for tests. All of this for the doctors here to make their own assessment of Cole. We also had one more Spinal Chemo treatment. This has taken a toll on Cole and us as well. Cole has been very tired and lethargic most of the time and the doctors have not yet had a chance to meet the Cole that we all know and love. All they have seen is this very tired and worn out boy. At the same time, Denise and I are staying in contact with our other two kids who are back in Florida with our friends.

Madisen's play "Hairspray" opened Thursday night and we were unable to be there for her. She has worked hard at this craft and has been very fortunate to have had some great roles in her plays at Standing Ovation Performing Arts, however she was particularly excited for this role as the mean girl "Amber". One of our friends was able to Skype us in, however it was not nearly the same. It was the first time we have missed one of her plays and it was heartbreaking. I heard from all that the play was terrific. Great job everyone! In our absence, our friends made it as comfortable for Madisen as possible. Thank you.

Denise's best friend and her husband Art and son Drea came back to visit us for the day on Thursday and it was comforting to have them here with us again.

Friday is here and we are anxiously awaiting our consult with our Doctors at 1pm to find out the current status of Cole's Leukemia and to receive his action plan. They asked us to come a little early this day to do another blood test with him, as his Sodium levels have been low. So we arrived at 12 noon and they drew blood for his test. The doctors are now ready for us and we meet in a private room with them. We bring Cole out into the waiting room, where he lays down and one of the volunteers watched him. Finally the time is here and the doctors present to us. They let us know that the Leukemia is still present in his CNS (Central Nervous System). They did not say how much, because they said that it doesn't matter. What matters is that it still exists and what the plan was to get rid of it. This is clearly not the news we were looking for. They still told us that they had seen this before and have had success in treating it. What they would not say is any percentages of success or any inclination of prognosis. This was not comforting to us. Nonetheless they let us know that the next step is a 4 week treatment that includes a couple of different chemo drugs (Asparaginase and Cytarabine). These drugs are not directly delivered to the CNS, however they are known to penetrate into the CNS. The hope is that they will clear these remaining stubborn cells in the CNS.

We go right from Dana Farber to the Boston Children's Hospital where we are admitted and Cole begins his new treatment plan. Denise decides that she wants to stay at the hospital this first evening and I head back to the Ronald McDonald house. It was a bumpy first night and neither Denise or Cole got much sleep. My night at the RM house was interesting as well, as it was the first night alone in our room.

Saturday is a little better as we had a consult with another of the doctors and she made us feel a little more comfortable. She was able to answer additional questions that we hadn't thought of the day before. She had also let us know that their were more weapons in their arsenal to combat this should this chemo round not clear the remaining CNS cells. She also reaffirmed that they have had success with similar cases, again without any percentages or the like.

Cole's next testing will be at a date in the future depending on his doctors, but it will be at last 3 weeks away.

The Cole Strong 28 tournament is all set for next weekend, Aug 2nd and 3rd. We have plenty of amazing auction items, however we are still looking for a few more volunteers. If you want to volunteer, go to the tournament website and follow the instructions on the volunteer page. This tournament will be a nice time for all and we are looking forward to great turn out. Thank you to all of my close friends who are working so hard to make this a success!

Tournament website: eteamz.com/colestrong.