UPDATE!!! (Progression)

September 18, 2011

You'll have to periodically check back to see new blogs as I write them. I just wanted to post an update about what has been going on recently.

August 31st: Oliver had his MRI, which we had moved up two weeks because we were seeing symptoms returning and/or getting worse. The MRI showed tumor progression. It was the thing we have been dreading for the last year and a half since his diagnosis. It's only grown a small amount that he doctor could see on the scan. We still need to talk about a second round of radiation which would only be three weeks as opposed to his first round of six weeks.

September 5-12: Trip to Disney World in Orlando, Florida. Oliver had to visit the ER the night before we came back home due to a horrible allergic reaction to something he had eaten.

September 16: Met with the pediatric oncologist to discuss our options for Oliver. Oliver wants to try chemotherapy so he will have his first appointment this Friday, the 23rd down in Iowa City. He will have an hour long surgery to place a central line (port) in his chest to cut down on the number of IV sticks he would have to get. He's very nervous for this. He'll be taking a chemo pill daily along with a steroid pill daily. He will also have an IV chemo once a week down in Iowa City. I'll have to see what the names of the chemo were again. I think one of them was Vincristine. They were two that I've never heard of.

September 17: Oliver was chosen out of over 200 kids to be one of 13 Kid Captains for the Iowa Hawkeye football team this year. After he was told that his tumor had grown, he told me that he wanted to live long enough for the game. He's been talking a lot about dying lately and asking tons of questions. He'll say... "When I die............." and I just lose my breath for a minute. How are you supposed to respond to that???

COMING...

Friday, September 23: Oliver will be having surgery to place a central line in his chest. He will also be having his first IV chemo treatment that day as well.

He knows his tumor is growing and what the outcome will most likely be. We are still fighting until the end, trying to ease his fears as they come up. We are also dealing with home issues as well as the health of our kids, especially Jaren and Oliver so if I don't return emails or calls, please understand that we are horribly overwhelmed at the moment, physically, mentally, emotionally and spiritually.

Please pray for us to be guided in all of the decisions we have to make at this time. Please pray for strength to be with all of us, especially Oliver. I know he is scared right now and I hope that he can be at peace -- that we can ALL be at peace with what is happening. My mind is constantly running from one thing to the next with no down time to rest. I just pray that we can deal with whatever life throws at us next.

Progression??

Well, it's after 3 am. I can't sleep. Oliver's benefit is tomorrow and I've been working on getting things finalized on my end. I'm feeling sick to my stomach right now as Oliver hasn't had a good day today. He's been falling a lot and complaining that it's harder for him to walk. He's been choking on things including his own saliva. He choked on some water and coughed, nearly vomiting in the kitchen. It's been harder to understand him lately and I've had to ask him to repeat himself a lot. He's also been crying... a lot... for no reason. I've been working on a slideshow and we were watching it and he burst out in tears and said that he didn't know why he was crying. He told me that he thinks it's from the sickness. I think he fears the same thing that Ed and I do... progression... that the tumor is growing again. I don't want to believe it. Maybe if I just stick my head in the sand and pretend everything is all right... it will be. Unfortunately I know all too well that I can't run away from this. His next scheduled MRI is this Wednesday, June 15th. Please pray for strength, peace and comfort, especially for Oliver as I can sense his uneasiness right now. We'll keep you all updated...