Memorial created 04-9-2006 by
Jerry "Grant" Lewis
December 19 1979 - January 17 2006
We found out in 1991 that Grant was infected with HIV. I'll never forget the day that I had to tell him. It was the hardest thing that I had ever had to do. He was on his way to the park to play baseball and I told him that I had something that I needed to tell him. After I told him, I asked if he had any questions and he only asked two. The first and hardest...."Am I going to die?" I knew he would ask this and I had prayed that I would have the right words to say to him. My response was, "Yes you will die someday and so will I, but I don't think it will be today or tomorrow and hopefully not any time soon". He looked at me and smiled and asked his second question, "Can I go play baseball then"? This is the attitude that Grant carried with him for the rest of his life, "NOT TODAY, BUT SOMEDAY".
Knowing that his immune system would someday be weakened, we worked hard to make sure that he avoided contact when the flu was running rampid in the school and seeked out the most current treatments that were available. Everything was fine, not even a cold or sniffle until September of 2000 when he suddenly became ill, with chest pain, shortness of breath and high fevers. He spent over 3 weeks in the hospital and 2 weeks after he was released, blood culture tests showed that he had Rhodococcus Equi, a pneumonia that normally only a horse would have. It was a very rare type of bacteria and it was the first documented case in the lower midwest. This bacteria was chronic and would require intravenous IV for 6 months followed by oral antibiotics for the duration. The bacteria was in the lower portion of his right lung at this time but we were told that it could move to other areas of the body at any time. Although the bacteria was chronic and would never leave his body, he recuperated and had very little problems with it, taking the oral antibiotics daily for the next 5 years.
In 2002, Grant had a slight problem with wasting syndrome and lost most of his muscle mass. This caused his body to thin down and become a little weaker physically, but it still did not stop him. He always said, "It's all in your head, if you think about it all the time it will only get worse". Over the next couple of years Grant had fatigue, developed allergic reactions to a lot of medicines and continued to battle the weight loss, but again, he continued on as if his health was normal. He never complained and was in very good spirits most of the time.
On July 31, 2005, He had went to Springfield, MO with his friend Tim to just hang out. It was about a 2 hour drive and he felt fine when he left but just before they got to their destination he said that he started to feed "different" and that his body felt "heavy". At about 6:00 pm I received a call from Tim telling me that Grant was not feeling well and had a bad seizure. They were at a friend's house and the paramedics were there with him. We immediately left to go to the hospital and upon arriving we learned that he had 3 grand mal seizures in less than an hour and that he was just beginning to slightly respond.
He spent 7 days in the hospital and battled with dementia and motor function due to the grey matter of the brain being affected. By the time we were able to take him home he was about 85% recuperated. He told me a couple of weeks after he was home that when it was time for him to die "he did not want his brain to be affected". He said that he wanted to "know everything that was happening every minute". He bounced back and again became the Grant that we had always known, going out with his friends, playing golf and going to watch the St. Louis Cardinal games. The one thing that bothered him the most was that he could not drive until he had been seizure free for 6 months and his 2003 M3 BMW was screaming at him!
This picture was taken a week after the seizures.
Picture: Taken about 3 weeks before Grant noticed his "new" problems.
Having recuperated from the seizure episode, Grant was looking and feeling great. He was on a new medicine cocktail that was increasing his T cells and lowering his viral load.
The first part of October he had a doctor appointment scheduled. On the morning that we were to go, he walked to our house (his home was on our land right behind us)and said that something weird had just happened. A friend had called him with a new cell phone number and he was trying to write it down, but wasn't able to write the numbers or letters. He said that he knew how to do it and he could feel it, but his hand would not cooperate with his brain. Hoping that it was a delayed reaction from the seizures, I told him that we would tell the doctor at his visit that day. He tried to sign his name at the doctor office, and again was unable to coordinate the motor skill that was needed. His doctor scheduled him for an MRI that day and told us that he would call in a couple of days with results.
Two days later, the doctor called and said that Grant's MRI showed some deterioation in the white matter of the brain and he wanted to see him again in a week to repeat the MRI. Done. The second MRI results showed more progression than the lastone. We were not surprised as Grant was beginning to have a little problem with his walking and balance. Another appoinment was set for 2 weeks.
Two weeks later at the next appointment Grant was still walking, but not very good. The right side of his head was numb (he said like it was full of novicaine) and was having some vision problems in his right eye. The doctor at this time told us that it could be either one of 2 things that was causing the problem: Reconstitution Syndrome ( a reaction that can occur when the body's immune system attacks itself) or PML (Progressive Multifocal Leukoencephalopathy), an infection of the white matter of the brain and a disease that there is no cure for and no medicine for. PML is a very fast progressing disease and piece by piece the body shuts itself down. The procedure to determine the definite problem was a brain biopsy and with Grant having hemophilia and with his immune system being so compromised, we opted out of this procedure. Hoping and praying that it was Reconstitution Syndrome, he began a regimine of steroids that could possibly counteract the immune response reaction. Unfortunately, the steroids did not change anything and Grant's condition continued to worsen. The diagnosis was PML.
By Thanksgiving, Grant had lost all ability to walk and had lost muscle control in his eye, thus the patch. Because of the loss of eye control, Grant was very nauseous and the eye patch seemed to help control it some. Fast movement of himself or of things around him would cause him to become very dizzy and nauseous. His speech was also affected and it was getting very hard for him to pronounce words. He knew them, but did not have the control to form them correctly.
On December 10, 2006 we decided to give Grant a surprise birthday party. Well, he sort of found out about it and we told him that it was a "Because" party, because we loved him and wanted him to know it. The party was planned in less than 10 days and well over 100 friends and family members from 7 different states made it to show Grant their support and well wishes. He had a great time as there were many friends that were there that he had not seen for several years. For the next few days he was very tired and continued to be VERY nauseous and not able to keep any type of food or liquid down. Several different types of anti-nausea medicines were prescribed, but the one that was preferred by the doctor was not approved by his insurance until he had tried two other types of medicine first. We knew that time was running very fast and that it was limited and pushed for quicker approval for the medicine. It was not approved until 3 1/2 weeks later and by that time his internal organs and kidneys were beginning to fail.
A doctor visit and another MRI again detected more progression of deterioration of the brain's white matter.
AT HIS SURPRISE PARTY 12/10/06
Christmas 2005 will not be remembered as one of our favorites. By Christmas Grant had lost total use of most all of his motor skills. His sister, Ashton, is shown in the picture opening his gifts for him. He was so angry by this time, but did not have the energy to express it too much. He just said that "he did not want to die and for us to not let him give up".
The day after Christmas, he was very weak and dehydrated so we made a trip to our local county hospital for fluids. By this time it was taking 3 people to carry him to the car and help with him. For this, we owe many hours of "thanks" to his friends, Shanna, Chana and Tim for their loyal help and assistance.
The fluids helped somewhat and he returned home and watched the final StarWars episode (his favorite one) and was able to make it through the entire movie and said it was "awesome".
Two days later a decision was made to take him to the local hospital to have a feeding tube inserted. This was the last day that Grant verbally spoke. The night before his surgery I took him outside to smoke and it was the last conversation that we had. He was still in pretty good spirits, not complaining too much, but very noticably very scared.
"BLESSED IS ONE WHO LOVES THEIR BROTHER AS MUCH WHEN HE IS SICK AND USELESS AS WHEN HE IS WELL.
AND BLESSED IS HE WHO LOVES HIS BROTHER AS WELL WHEN HE IS AWAY AS WHEN HE IS BY THEIR SIDE, AND WHO WOULD SAY NOTHING BEHIND HIS BACK THAT HE WOULD NOT SAY IN LOVE, TO HIS FACE"
Blake helping to feed big brother.
The day after the feeding tube was inserted, we took Grant home. In the night he took a turn for the worse and had to return the next morning to the hospital, this time we had to accept hospice care. We spent 2 very touchy, soul-searching days with lots of tears and prayers before we could again take him home.
The day he came home was the day that a port was to be inserted for more nutritional support. When the surgeon arrived to do the procedure... Grant suddenly refused! We do not know why, as everyone, including Grant, knew that it was our last weapon to keep him around for a while longer. He managed to speak one word, "HOME". We knew what this meant and asked him if he was sure this is what he wanted and he shook his head yes.
Grant had received his request of not wanting to lose consciousness or not be able to be aware of what was happening. Even though he could not talk or even move one little muscle, he was very much aware and alert at all times. He could shake his head yes and no and occassionally shrug one shoulder if he was indifferent or didn't know. He also communicated with everyone with his eyes. We knew exactly what he needed or wanted without ever hearing his voice. He was trapped inside a body that did not work.
Grant told us that he needed a hair cut at 11:00 at night. We called his barber friend, Matt, and he immediately came to perform the request.
Grant had visitors from Louisiana, Wisconsin, Arizona, California, Massachusetts and Florida that also came to help in the last few days, giving him care and standing vigil so that the rest of us could relax somewhat.
Community friends also helped by providing meals for our family and friends during the final two weeks.
In this picture, two of the mothers of Grant's hemophilia/HIV friends who had passed away were taking their turn. They are the mothers of Brandon, of Wisconsin and Ryan, of Louisiana and have been mentioned before in this memorial.
Friends, Corey Dubin of CA, Kim Bernestein of FL and John Rider of MA taking a break from the around the clock care.
THANK YOU SO MUCH MY FRIENDS FOR BEING THERE WHEN WE NEEDED YOU! Connie, Michelle, Chana, Shanna, Corey, Kim, Angie, Debbie, Anne.....
You all surely earned your wings!!!
Two weeks after bringing Grant home from his last hospital visit, the BRAVE BATTLE came to an end. Grant left us at 8:30 am on Tuesday, January 17, 2006, the same day as his little sister, MaKayla's birthday.
Grant, your hard fight is over, but our fight continues. We will never stop teaching the lessons that you taught and will never let your death be in vain. You go and rest now in heaven and continue to guide us from there. We will listen and hear you.
WE LOVE YOU AND MISS YOU,
Life before death is a journey spent searching your soul.
Life after death is where you find the destiny of your soul.
After all it is after death that you reach our Father's goal.
So fear not death, and be so bold
For it is only a transition through death
To be home with the Father to have and to hold
-Sean Maurice Thompson_
Sean is Grant's cousin. He wrote this poem after comtemplating Grant's death.
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