FRIDAY IN LONDON

Hi Everyone,

Again, thanks for all the notes of encouragement. Jon has done amazingly well. He has been up and on several walks. He was quite happy to be unhooked from all lines today. He did have a pretty strong headache through the night and we're trying to work out pain medication again. Unfortunately, his extensive history has had him run through most narcotic medication. The result is, not only high tolerance, but itch. Itch. Itch. ITCH!!!! So, then it's a balancing act of medicine, benadryl and timing everything so that he's not crawling out of his skin. We are going to switch from Dilaudid to Demerol today and hope that the itch will be alleviated. The surgeon feels that we may only need another day or so of pain management. Then, after that, nothing that Tylenol won't handle.

I napped for a while and Jon watched a couple of movies. Now it's his turn to nap. We've had some visitors from the staff that we've come to know so well over the years. Even the surgeon who did Jon's lungs came by. Melissa (a child life staff) left her calling card yesterday. It was a bucket of snow with a sign that said 'Ready to fight'. Many years ago, Jon was inpatient during the winter. He looked out the window and wanted so much to be outside playing. He decided to take the box of Kleenex and roll all of them up into little balls. The next person that came in was going to get pelted with his 'snowballs' whether they were ready or not! It was Melissa. He began throwing his make believe snowballs at her with a warning of "Snowball Fight!" She immediately ran to the bathroom and used tissue to make her own snowballs. It's a fond memory for both of them. Children always find a way to be children.

Cindy came by and remembered a time when Jon was very young and in patient. She was visiting and a doctor came in. Jon kept looking all around. Finally, Jon spoke up and said "Where's the rest of your family? They can come in too." We are in a teaching hospital and doctors often have a team with them. He was used to seeing everyone together. What a nice feeling that he attributed to the team. A feeling of family. It is certainly how we feel when we are here. So many of the nurses, doctors and support staff illicit such a feeling when we are near them. They are all dear people without whose dedication would make these times quite unbearable.

Jon's MRI is minus 'Fred'! There is still a black area where Fred used to be. Some air and blood pool in this area, (and cause headache) and it takes a few days for that to go away. Another MRI will be done mid-February when we return for follow up. We'll be focussing on the sagital sinus area to determine that there are no remaining cells there. If there are, a decision would be made to either radiate in that specific area, or to leave things alone and see how slowly they grow. Of course, we also await the pathology report, which we believe will be available early next week.

Hoping to be home tomorrow or Sunday. He'll have a good rest at home for a week or so. He's is the best judge of what he can handle. Jon is so knowledgeable about his health and such an articulate advocate for his needs.

We are on the road to recovery and Jon is mending well.... but so many must continue to fight daily, hourly, minute by minute. I humbly ask that you continue your prayers for these children and their families. Most especially our buddy Ryan Patrick. Jon is humbled by Ryans strength and spirit. His very dedicated family help him navigate hurdle after hurdle. Ryan continues to endure very debilitating effects from GVHD. Yet, finds it within himself to keep up an overwhelming schedule of healthcare routine, schooling, hobbies and filling his families lives with wisdom far beyond his years (and the occassional spunky teenager moments :-)

We truly feel the blessings of each day, and know that each day brings a gift to unfold. I used to sign off on my listserv messages with 'Bloom where you're planted.' I believe whole heartedly that this is the best way to unfold each day's gifts. Today we consider all those that help, support and love families like ours the gift in our day.

Blooming in London
:-D