Thursday, February 21, 2008

Dillon's birthday, pneumonia, brain surgery, & "Care Communities" team

Hi cheering squad: Yesterday was Dillon's 11th birthday and he celebrated in the lobby of the hospital with John, Diane Colvard (the angel who brought him from Austin and his primary caregiver while we are in Houston), Peg Syverson visiting from Austin, and me. It was the happiest few hours in John's whole day--I could tell by his non-stop smile!

Today was a busy day, with lots of doctors and treatments. Dr. Forman came in early this a.m. and did the lumbar puncture to get spinal fluid. Dr. Jack Fu, cheerful rehab doctor (from the 8th floor unit we'll be moved into as soon as they have a room), came to chat for a long time about strategies they use for nerve issues like John has. The bone marrow team came by and declared the pneumonia to be fully treated now, with no more vancomycin or other pneumonia infusions needed. However, we will stay on this floor waiting for a rehab room and be visited a lot by neurology and rehab people. Speech pathologists came in and observed John swallowing. They are concerned John is choking a bit on thin liquids like water, as he starts coughing too much, so they plan a barium study of his swallowing tomorrow. At the present moment, John is eating a cold container of cinnamon maple applesauce from Whole Foods--to get it down before midnight when he is not to have food or liquids, in preparation for the barium study. Curtis, wonderful massage therapist from MD Anderson's Place of Wellness, came by to give John a short massage we had signed up for; but since John was being examined by doctors, I got to have the massage in my chair while we all listened to doctors:) John has so far had 2 massages from Place of Wellness during this stay and there will be more.

John is feeling better from the pneumonia and blood counts are better. However, neurological symptoms continue and these affect pretty much his whole life--like talking, walking, using technology, and to a smaller extent, eating and peeing. He has been walking regularly with physical therapy people, me, and/or nurses and he goes at a good clip but balance is off and they call this ataxia (lack of coordination due to nervous system problems).

Dr. Forman is growing impatient about John having to suffer these neurological problems, and he is very concerned that we still don't know the cause and therefore may not be treating it. When Dr. Forman came back around 4pm, he had checked lab results and seen a couple of preliminary results, including protein level from this sample and the last couple spinal fluid samples to be trending higher (although not all that high--just a baby clue)--indicating that something is not right. Also another mini test showed some elevation that could indicate a cancer. These alone are not strong results but we will hear more tomorrow as they complete more of the analysis. Dr. Forman is again suggesting that next week we should start considering the brain biopsy. When we asked about the risk issues, he said that the neurosurgons always re-evaluate risks based on the emerging situation. John and I were both a little down about all of this, but plan to listen to all of the details very carefully tomorrow and next week. Tonight we distraced ourselves by watching the Clinton-Obama debate, which we enjoyed.

We received a nice call from an organization in Austin called Care Communities (formerly Interfaith Alliance). Sharron Rush had contacted them on behalf of John, as they form teams to support cancer or AIDS patients in their homes. If we can sign up people to join the other volunteers they have available, we may receive some great help in our home when we return to Austin. The help is like shopping, caring for a pet, gardening, cooking, talking to person being cared for, and/or other activities that people want to offer and John wants to receive. I love that they build a team to do this and the team members communicate closely to make things happen. The team can grow as needed. Anyway, their monthly training is this Sunday, the 24th from 1:30-4pm and if you are willing to do this for John, we would be very very grateful. It sounds to me to be a very fun organization. Here is website link, more information, and who to call:

We continue to appreciate the blessings you bring everyday. For instance, there's a big bouquet of yellow get-well ballons beside my computer screen here in G1160. They are from John's UMichigan dorm-mate, Ken Portnoy (now a resident of the DC area). Also a very special thanks to Diane. I spent some time with her and Dillon this morning in the hotel, and she spends loads of time sweetly cajoling him to eat more, tries different foods, and gives him his pain shots regularly.

Love, Anna and John


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