Will's Celebration of Life

Will is a 10 year old boy who was about to start the 5th grade. In June 2015, he started having headaches and was not able to grip his baseball glove. Doctors discovered a brain tumor in his brainstem. This family needs your help. Read more about their story that Will's dad wrote below. Any amount you can give to help Will and his family is appreciated!!

Will left this earth after a courageous battle on Monday, November 2, 2015. Please keep this family in your prayers and hearts.

Will's dads story:
For about two weeks prior to June 28, I had noticed that Will had been tripping and being a little more clumsy but did not think much of it because he had been wearing Crocs during that time. I figured that the different soles was causing him to be clumsy because of the different type of sole. Then, I noticed that while at a restaurant, he dropped his drink three different times and I just attributed that to him being careless.

Then, June 21 I took Will to the park to play catch with a baseball and his glove. We forgot his glove at the park and by the time we realized that we left it at the park, it was gone. I had another glove that was better fitting I thought and told him that he could use that instead. Will acted as though he did not want to use it. I told him that if he used the glove during his games on June 24th and 26th, I would take him to the store to buy another that he liked. During the game on the 24th, I watched Will try to put the glove on and he acted as if it did not fit and his fingers would not go into the holes. I figured he was just being a kid and was acting as if it did not fit because he wanted a new glove. So, I told Will if he would use the glove for the game on the 26th, I would take him to the store on Sunday the 28th and buy him a new glove. We get to the store on the 28th and I find a glove that was his size and put it on my leg so he can get his fingers in the holes. I watched as Will tried, and he was doing the same thing as he was doing with the glove that I asked him to wear during the last game, as though his fingers would not go into the holes. I asked him to straighten his fingers out and he said that he was trying but couldn't. At that point, the world came down on my shoulders because it dawned on me that the fingers on his right hand, because he is left handed, would not straighten out, and he had an irregularity in the way that he was stepping with his right foot for about a week. He may have had a stroke! So, I push the cart to the side and we rushed to the car and ran every stop light to the hospital. They take him back and do a CT scan on his brain. We wait and they come back and tell me that the test came back clear, but they would like to do an MRI scan of his brain and spinal cord, but the person that reads that type of scan would not be available until Wednesday. They then ask me if it was ok that they transported Will down to the University of Michigan hospital because they could do the scan and have it read the next morning an hour after the scan. I agree and an ambulance comes and they load and drive him down as I follow behind at 1:30 in the morning.

The next morning, they took Will down for the scan and have to put him under because he could not stay still. They do the scan and bring him back and he later wakes up. Shortly after, the doctor comes in and says that they have found a tumor growing in the back part of his brain. They inform me that they are contacting a neurologist and other specialists to come in within the hour to look at Will's scans and decide what to do. After they come and meet to discuss everything, I get called back and am informed that they think that Will has a DIPG tumor that is in his brain stem and that the standard of care for this type of thing is radiation. The doctors discuss what all is involved and evaluate Will. They schedule the next appt, July 6th, for the fitting of his mask for radiation.

During the appt on the 6th, they perform another scan and put him in the machine for the fitting of his mask.
I get on the phone and call three of my friends who are doctors and ask to meet with them. I meet with them and discuss the situation and ask for their input. One friend said that she would start looking for clinical trials for these type of tumors and tell me that if it was her child, she would locate a clinical trial and find out what it takes to get him enrolled. So, her and I begin looking for trials and we locate a number of them. She calls the doctors at these various trials in Memphis, Chicago, Cincinnati, TX and Boston and discuss the inclusion/exclusion requirements for each trial and discuss Will's situation.

I then get in contact with every doctor at every trial that we located and talk to them about what I needed to do to check and see whether Will could be part of each trial. I spent Wednesday the 8th and Thursday the 9th at two hospitals, all day, getting his discs with images and the written reports for each hospital, including his
primary doctor. I contact each trial and have them email the program and pass code to upload his images to their server so that they can download them and have the oncologist and surgeon look. This takes me a couple days, but I finally get them uploaded and sent to Boston, Memphis, Chicago, Cincinnati, Texas and Detroit.
Every doctor that I talked to told me that they do not think that he has a DIPG, which is a tumor whose epicenter is in the brain stem. They all tell me that they think that he has a tumor that originates in the medulla, below the brainstem that has extended up into to the brain stem, but its epicenter is not in the stem. This was good news because DIPG tumors are literally a death sentence. But, he still has a tumor and the prognosis, while better than a DIPG, was still not good and that they felt he should be enrolled in a trial involving radiation and some trial of chemotherapy.
So, I take all the trial information that I have and begin nearly daily discussions with each of the doctors in Chicago, Cincinnati,  Bethesda MD, and Univ of Texas about their clinical trials. They each inform me that he will need a biopsy to determine exactly what type of tumor it is and then they would be able to determine whether he would be able to be part of their trial.
Wednesday of last week, we took Will to Chicago to meet with another physician. He does an evaluation and discusses his trial. He confirms again that he will need a biopsy to confirm the type of tumor.

For the past two/three days, I have been in contact with each of the billing offices for Cincinnati, Chicago and Boston as well as his insurance company to discuss coverage and what my out of pocket expenses will be. This is proving to be a work in progress. While all three hospitals are in network, there are considerable out of pocket expenses. I have learned that during a clinical trial, Anything investigational would not cost us anything, like the drugs that they are using in the trial, but the other things that are considered 'standard of care', like blood work, scans and other would be our responsibility.

I have narrowed down the hospitals that we are considering, Chicago, Cincinnati and Boston. Chicago and Cincinnati both said that their neurosurgeons have looked at the scans and have decided on the type of biopsy to perform. The doctor from Dana Farber-Boston has agreed to see us in Boston. There my son will have a biopsy of the tumor and we will find out what the next steps are for Will. The doctors now believe that he does not have a classic DIPG, but has a tumor that originates in the medulla and grew into the a small portion of the pons brain stem.
8-1-2015 update: Will has undergone a biopsy of the tumor that included removing a portion of his skull. He is now recovering in the hospital. His parents are looking at clinical trials all over country to find the best one for Will. Will and his family need our prayers and all of the help we can provide.


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Organizer and beneficiary

Jamie Wittkopp Rahrig 
Haslett, MI
Shane Goodale 
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