Bashing furniture and stomping on the floor

Update by Grandma. March 8 2012 9am. I stayed with Will in hospital last night giving Lois and Randell a well-deserved break. It was so much fun being in a bed next to Will. We played IPod games, Xbox games, flew little airplanes and catching up on personal news and watched a movie on TV. And giggling about a few ‘do you remember when’ stories from the past. Grandpa Jacques is traveling in from Arkansas today - for the first time since Washington DC (Will’s Make a Wish Trip) we will all be together again; making memories.


Life should continue as if normal. That is what the Dr and staff said in the meeting yesterday. Keep up the discipline. So this morning when Mike, the nurse, brought medicine to be taken by mouth Will refused to take it. At first I just sat there watching Mike’s face, and I could see he is going to back off. I took a deep breath and told William in the sternest voice I could make up – you will take this medicine- it is not negotiable. And so a 2 minute long argument started and at the end Will took the medicine and pulled his worst ‘this taste bad’ face. I told him to fix his face and he did. Normal feels right.

Will is in constant pain and is receiving Fentanyl (a narcotic similar to morphine with fewer side effects). One of our daily objectives is to strike a balance between managing the pain and him being alert enough to be sociable. He also has a button that he can press to control his own medication when pain gets worse. Starting today he will wear a Fentanyl patch and the IV will be turned down slowly and eventually unhooked. We are preparing Will to be mobile and free from all the IVs for when we go to Disney and the long travel back home next week. Back home we will start the necessary IVs again with the help of Hospice.

I am learning to play Lego: Indiana Jones, original adventures on Xbox. Ever played it? Quite an aggressive game – the little character have to destroy a lot of things to get points. Kinda what I feel like doing right now; bashing furniture and stomping on the floor.

The meeting with a panel of Doctors is never to give you good news..

Hi all William’s friends, supporters and family. This is Grandma Sally. I arrived in LA today(March 7), and after our meeting with the doctor and his support staff Lois asked me to please update the blog and post on Facebook. Posting today and all the days that follow will be my responsibility. I will give you the updates as it is.

About the meeting this afternoon: Randell, Lois, myself and Jacques (on the phone from Arkansas ) met with Dr Andersen and discussed Williams prognosis. We looked at Will’s scans from a month ago and we looked at the scans from Monday. There are new tumors everywhere in his stomach cavity, liver, above the adrenal glands, lungs, spleen bladder, etc. And we could see the impacted lymph nodes on the scans too. One small tumor in the lumbar area grew 300% in 4 weeks. The tumor that is causing the most concern is next to/attached to the bladder. It is close to a lot of nerves and is the cause of discomfort; painful bladder spasms are chronic. We discussed all treatment options, and I will give the man his due, he did his homework and called on his mentors and experts and laid it all out on the table for us. Treatment choices are limited because of Will’s low platelet count. He also has a nasty cough with fluids in the lungs with low grade fever. Surgery is not an option, regular chemo protocol is not an option and radiation is a small maybe.

We met Dr Andersen a year ago after Loiss and Jacques went on a road trip to get 3 second opinions. Through the grace of God, this man has used his medical skills and knowledge to give us one extra year with William. In today’s meeting he reminded us that the treatment option we now decide on is to improve quality of life. The medicine’s purpose now is to make him comfortable and if possible slowdown the growth of the tumors. He suggested a low dosage of chemo to slow down the tumor growth and anti-angiogenesis that prevents the flow of blood to the tumors. Neither will impact the platelets negatively. Both these medications and other treatments can be done in the comfort of the Stowe-Klopper family’s home. Dr Andersen said that things will get a bit better before it gets real bad.

The City of Hope staff already reached out to Snowline Hospice in Diamond Springs close to home. We should have a conference call with them soon. In the meantime the process has started to get Insurance approvals.

Focus now is to get Will well enough to do a few things that are on his bucket list. The first thing is to go to Disney World next week. And we plan to then drive back home to El Dorado before the week is out.

It was a very emotional day. A day full of gut wrenching, life changing news. It’s hard not to get overwhelmed.

One day at a time.