NOTE FROM THE MACS STAFF

Justin's story has NOT been updated yet since he passed away on December 25th, 2002. We will update the end of his story as soon as we receive more information from his family.

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Justin's Story
written by mom Mary

Justin was born on August 2nd, 1992. He was a red head and so cute. He was always a very alert baby and always ate very well. When he started to crawl he was even more joy. He was so energetic and smiley. He always was on the go and into mischief. When he stared toddling around and walking he really blossomed. He loved to play with trains and small toys and cars. He loved the outdoors and animals. Justin started Kindergarten and needed a little help with speech and some fine motor skills. He loved school and enjoyed every moment of it.

Justin then started first grade and enjoyed that just as much as kindergarten. He always won the hearts of anyone he encountered with his bubbly attitude and loving personality. In second grade he loved to read and loved anything to do with history. He is very good in math. Then while he was in second grade, in May of 2001 he started not feeling well and not acting quite himself. He started with stomach pains and feeling sick to his stomach on and off. I took him to the doctors often and called his doctor. This had gone on for quite a long time. Then I decided to have another doctor look at him because I knew something was wrong because he just got worse and worse.

Justin wasn't eating at all, running a fever every day, sick to his stomach every day, and lost a lot of weight. The new doctor he saw ran some blood work and sent him to a stomach specialist. The stomach specialist ran some tests and found out that Justin had a very severely infected stomach and had put him on some medication for that. Justin was only on the medication for about a week when he got severely worse and his stomach had popped out and turned hard as a rock. I took him back to the stomach specialist right away and he admitted him into the hospital and had run some CT scans and some other tests.

Late that night he came to ask to talk to us alone. He then told us that Justin had Liver Cancer that had spread to his lungs and was quite severe and massive. It crushed my world around me, I couldn't believe what I was hearing. My children are my whole world and there was someone in front of me telling me that my son had cancer that had already spread and was massive! It was like someone had taken my heart and ripped it right out of my body. It is so hard to explain everything I was felling at that moment.

They sent us to Syracuse University hospital in New York the next day. We saw Dr. Sadowitz there who ran a biopsy and had put in a central line, ran a bone scan and some other tests. It just crushed my heart to see Justin in such a serious condition. He was in so much pain for so many months and now in severe pain and with such a very serious condition. The biopsy had come back that Justin did have liver cancer with two types of cancer cells, Hepatoblastoma and hepato-cellular carcinoma cells and that the tumor was so massive and in his lungs and he was already into stage 4 of the cancer.

This all happened in August of 2001. They started chemo at that time and the first regiment they used didn't work at all. His alpha-pheta protein level that showed that the tumor was growing and active was way over a million at the time of the first round of chemo and it should be a one digit number like 1-9. They started a new chemo and that showed some progress. They used that one a few times before that stopped working and then started a new one again. This worked for a while and then again stopped working. Then we started another kind and this worked for a while and then that showed that it to was no longer working. In the process of all of these chemos he had other numerous tests like echo cardiograms and CT scans and an arteriogram.

Justin was such a trooper and learned very quickly about his chemos, all of his tests and all about his labs on his blood work. He is such a smart and bright boy with this fun loveable personality who wins your heart quickly. At this point the doctors said there was nothing more that they could do for him in Syracuse and sent us to Delaware to see the liver transplant doctor Dr. Dunn in December, two days after Christmas. Dr. Dunn thought they could go in and take half to three quarters of the liver out that was tumor and then do chemo since by then the tumor had shrunk and was contained to mostly to one side of the liver but very close to the main arteries and the chemo had taken care of the tumors in his lungs at that time, so we schedule a surgery date for January 28th, 2002 then went back to New York and did one more round of chemo before the surgery.

Then in January we went to Wilmington Delaware at A.I. Dupont Hospital on the 27th to get ready for the surgery. They admitted Justin that day and ran another CT scan. That afternoon or evening they came back and told us surgery was no longer an option because the cancer was now over to other side of the liver. They had listed him as a status 1 for a liver transplant from a cadaver donor. We were on a time limit because if we didn't get a cadaver donor we would have to use a living donor or do more chemo and we knew if we did more chemo we would loose the battle.

So my husband started testing to be the living donor and had failed because they found he had some heart problems going on. This used most of our time for testing for a living donor and we were running out of time. We only had until February 8th to either get a cadaver donor or to get another living donor ready and done with all the testing that needed to be done. My brother had offered so he started his testing and had passed almost all the tests except maybe two that was some blood work and wouldn't be back until the end of the week. Dr. Dunn and Dr. Casas (the liver transplant doctors) scheduled the surgery for February 8th and would just wait for my brother Dean's blood work to come back on the 7th.

On the 7th they called and said Dean had passed everything and for Justin and Dean to be admitted that afternoon. The surgery was a great success, Justin and Dean came out of the surgery quite well. After about almost a month of being in the hospital Justin was released and doing quite well. His alpha- pheta protein level was down to around in the 60s to 70s. Dean after a week was released and doing well and went back to work after about 3 weeks. Justin and I stayed at the McDonald house and went about twice to three times a week over to the hospital for blood work and other things. Justin got sick and was sent to the ER and was admitted caused from fluid in his lung. After a while he was released.

Then again on March 27th, he got sick again and was admitted to the hospital for fluid on his lung and in his abdomen. He had to have tubes put in again into his lung and abdomen, then eventually in his heart also where fluid built up. He's also been fighting infection after infection. Now his alpha-phetaa protein level is starting to climb again and getting higher and higher. He then had another CT scan to show that the tumors on his one lung had come back. They went in and removed 3 small tumors off his lung and biopsied them. The tumors mostly showed the cancer was hepato-cellular carcinoma, which usually doesn't respond well to chemo at all and the survival rate is low to slim.

At this time the oncology doctor Dr. Griffin asked us to decide if we wanted to do chemo or quality of life. We of course decided to chemo since my husband and I can't give up any hope that Justin won't come through this. Justin had his first round of chemo just recently and now has more tumors in his lungs and his alpha-pheta protein level is even higher and his liver has shown a sign of rejection through the chemo. The rejection is now under control. He is also trying to fight off some more infections in his little body with his white count almost nothing at this point. His white cells are what help to fight off infections and should be around 3.5 or a little higher,  Justin's were .1 and are now .3 and he has to receive a shot every day and he also gets a food bag for 18 hours a day.

Justin could use so many prayers right now. He has a special angel healing coin that he takes every place and has had it through all that he has been through. I truly believe Justin wouldn't of had so much strength and blessings without prayer. I ask that you say a prayer for Justin and his brother Eric who is very close to Justin and his sister Kaitlin who also close to him. They also have endured so much this past year. The separation has been so hard on all of us. Please say a prayer for my husband who has to keep working and take care of things and the children in New York while we are here and then travel to Delaware on a 4 hour trip every weekend down and then back for such a short visit. Please give me strength to keep going. I love my children more than anything in the world. They are my whole life and could never endure loosing one of them.