Mike passed away at home around 5:30am.
He passed peacefully and is now free from pain.
As much as we will miss him we know he is now in a better place. We will be having a service and a celebration of life after. We will let you know when the service is at a later date.
Thank you all for all the prayers, good wishes, kind words, and contributions.
Mike is going to be admitted to hospital today. He had a very bad case of thrush and was unable to eat or drink for 3 days. Needless to say he is very dehydrated. While he is there they are going to check all the tubes. Some of them are no longer working or are they needed. They are just in the way. At the beginning of this the tumor caused Mike to retain fluid. For the last 2 weeks all the fluid is gone. Also the 2 kidney tubes are supposed to be replaced every 3 months. His have been in for 4 months so they really need to be changed. Mike is very weak but I hope with fluids and a blood transfusion he will be strong enough to have the work done on the tubes. Thank you all for your good wishes,positive thoughts and prayers.
Mike is in Mass General. He seems to be feeling well. They placed a bag over the hole in his skin to collect stool. They were not surgically able to do this. The bag is taped to him, but it seems to be working. Hope to be going home within the next couple of days.
What a fighter.
Came to Mass General by ambulance last night. I guess I should be glad that his Dr. is still willing to try some treatments. Usually when you go home with hospice thats it. No treatment, comfort only.
We went to roll Mike yesterday and his old incision from his surgery 3 years ago started to open up. When it opened fecal matter came pouring out. There is not much they can do but they put a bag over the hole to catch any output and they started him on 3 different antibiotics. Like I said, Mike is not going without a fight. He is amazing.
Mike continues to prove the Doctors wrong. He is amazing. It has been 2 weeks since they said we would never be able to bring him home,and 1 week since we said screw you he is going home. They told us he would not be able to eat ever again. Today he has had a half a bowl of oatmeal and a piece of cheesecake. He is comfortable and has been passing his days playing video games with his brother and brother in law. We also watch some TV or a movie as a family. Mike wants everyone to be together for this. He has his moments when he needs a small nap but for the most part he is awake most of the day. He is the strongest person I will ever know and I am proud he is my son.
To everyone who has been following Mike's journey,
please, please do not make the same mistakes we did.
Question everything. Do not put your faith in one Doctor. Always get another opinion on every diagnoses, every test, everything. We went to what is rated one of the top hospitals in the country. When Mike was first diagnosed the Doctors warned us to watch out for people that would make false promises about cures. We never had anyone approach us. I wish we did because I might have listened. Research all the hospitals that offer alternative treatments.
Many mistakes were made by Doctors treating Mike. We did not find out about them until it was to late. No Doctor will ever admit a mistake was made. I heard some of the most outrageous excuses to justify what we were told was fact. Not one would even say sorry because that would be admitting guilt.
So please take control and do not let the Doctor take control. So to all our friends and family have a safe and happy New Year.
I swear Mike is holding on through pure determination. It has been 2 weeks since the Drs gave him days. He can not eat. He has been able to take in liquids but he can not really absorb any of the fluids.
Everything he takes in just comes out of one of his 6 drains.
Rusty has barely left his side since Mike came home.
When the nurse comes he watches her like a hawk.
Damn Cancer. Its not right.
Mike has been having some comfortable days since returning home. It was great having him home for christmas. He enjoyed watching his niece open her presents.
Thank you all for your continued support, kind words, and prayers.
Ambulance coming to pick up Mike at 2 to bring him home for Christmas. Its all he wants.
Again thank you all for your donations and kind words and prayers. This is a terrible time for any parent but I have to believe that Mike will be going to a better place with no more pain. He will be able to do the things he could never do in life because of this awful disease.I wish I had never have had to set up this fund because that would mean that my son had never gotten sick. Mike has fought so hard for 8 years. He needs a rest. We as a family know Mike has to leave us, but that is still very hard to accept. Rusty will be very sad to lose Mike but we will take very good care of him.
Thank you all. People that we have known for years,and now people that we have never met.
There are so many wonderful people in the world.
To all the wonderful people who have donated our sincere thanks. You have helped more than you could know. I have been trying to thank each of you personally but have become overwhelmed.
The picture of Mike and Rusty was posted on my sons facebook page to show all Mike's friends. They all know how close they are. It was a very touching moment. The lady smiling has been taking care of Mike for 8 years. She knew it was a very joyous moment for Mike. It took many people working together to make that moment happen.
Mike does not want everyone around him crying, he gets upset.
Mike underwent a procedure today that might allow him to come home within the next couple of days if he is strong enough. That would be the best Christmas ever. Then Mike and Rusty can be together until the end.
Mike is still in the hospital. They replaced 2 drains that were infected, and placed another drain in his abdomen. Seemed to help a little with the pain.Still waiting for the surgeons to determine what to do about the bed sore. They say they would like to wait until he is more comfortable. I say he will not be more comfortable until they take care of the wound. Makes sense to me. Just watched a Dr come into the room to flush new drain. No gloves, no gown,no alcohol pad. Lost it. Told him to leave room and not to come back until he was properly sterilized. He apologized and said I was right. Imagine what happens when there is no one watching. Simply dumbfounded
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You posted a new update message:Friday the 13th. Mike was admitted to the hospital thru the ER last night. Severe stomach pain, vomiting and very bound up. Scans showed no blockage, however it did show that the tumor has grown about a centimeter in the last month. So the Yolandis is no longer helping.The oncologist will be starting a new drug soon. It is in pill form. I do not have much information about it yet. He said on average this new drug will be effective for 3-6 months.After that he said he will have to start being very creative. Never give up. First Mike has a couple of problems that need to be attended to before treatment can begin.One of the drainage tubes is infected. They just took him to the OR to replace the tube. The second problem will also be addressed in the OR. They say his bedsore is ready to be debraded? Not sure of the spelling.They need to get into it and really clean it out. It is very deep in some spots and is also a source of infection.Not sure when this will happen. Maybe tomorrow. This poor kid just can not catch a break.Please send all the prayers and good wishes you can. The family is very grateful for your continued support.
Friday the 13th. Mike was admitted to the hospital thru the ER last night. Severe stomach pain, vomiting and very bound up. Scans showed no blockage, however it did show that the tumor has grown about a centimeter in the last month. So the Yolandis is no longer helping.The oncologist will be starting a new drug soon. It is in pill form. I do not have much information about it yet. He said on average this new drug will be effective for 3-6 months.After that he said he will have to start being very creative. Never give up. First Mike has a couple of problems that need to be attended to before treatment can begin.One of the drainage tubes is infected. They just took him to the OR to replace the tube. The second problem will also be addressed in the OR. They say his bedsore is ready to be debraded? Not sure of the spelling.They need to get into it and really clean it out. It is very deep in some spots and is also a source of infection.Not sure when this will happen. Maybe tomorrow. This poor kid just can not catch a break.Please send all the prayers and good wishes you can. The family is very grateful for your continued support.
Mike has just received his third treatment of the clinical trial chemo they are trying. Recent scans have shown the drug is keeping the tumor stable and his lungs are still clear. All good news. There have been a few bumps along the way. He has been hospitalized twice in the last month for problems resulting from the tumor. There is quite alot of fluid in the tumor which in turn places pressure on his kidneys. He now has 4 drains in place. 2 go directly into the tumor and he has 1 in each kidney. The pressure is also causing fluid retention. His leg is very swollen. Lasix does not really help much with this type of swelling.
Through all of this his spirits are still pretty good. I do not know how he does it. He is a very strong young man and I am so proud of him. Please keep sending positive thoughts and prayers, and to every one who has donated much thanks. You dont know how much it helps.
Sorry I have not posted for a while. Two months ago a new tumor was found in his pelvic area. The tumor was filling with fluid and causing harm to his kidney. The doctors inserted 3 drains. 2 are draining the tumor.and the other his kidney. Mike can no longer receive regular chemo so he is in clinical trials. It is hard because we dont know if the drugs he will get will have any benefit or not. You have to have hope that the new drugs they are developing will work. That is what is keeping us going right now. Thanks to all who have donated and have kept Mike in their prayers.
Things are not going so well right now. Please send positive thoughts and prayers.
Doing well during 4th round of chemo.
Mike and his runners at Marathon dinner
Mike meets Shawn Thorton
Some fun during treatment
Whoops, meant to say chemo is hopefully
Mike had scans on Thursday and Friday. No new cancer was found. Maybe this new cancer is working. He starts his 4th round of treatment on Monday. Positive thoughts. Thank you all for your prayers and support.
In April 2006 two months shy of his 14th birthday my son Mike was
diagnosed with metastatic Ewings Sarcoma. Ewings is a rare cancer that
attacks soft tissue and bone.The primary tumor was in his right pelvic
bone, and had spread to his collarbone, 2 ribs, both shin bones, and his
lungs. The Doctors at Mass General Hospital in Boston did not offer
much hope. They told us he had about a 5% chance of beating this. He
started aggressive treatments. Every 21 days he was admitted to the
hospital for chemo. Treatment would last from 3 to 5 days. He also had
over 100 radiation treatments to different parts of his body. After the
year was done Mike did what was almost impossible, He was cancer free.
Things started going back to normal. Mike was able to attend school
again, then in April of his senior year he started experiencing pain
again. Tests revealed he had a new cancer radiation induced Osteo
Sarcoma. Mike started more aggressive treatments this time. He would be
in the hospital for 10 days every 3 weeks getting chemo. They scheduled
surgery for after Graduation. He had what they call an internal hemi
pelvictimy . They cut out his right part of his pelvic bone and replaced
it with a cadaver bone. They also did a hip replacement.Recovery from
this surgery was awful and he was never without pain. He also could not
walk at all without crutches. Again it seemed he beat the odds and was
doing well. He had scans in December of 2011. The oncologist said there
was a slight uptake in the pelvic area, but he did not think it was
anything to worry about. I called the Dr. in May of 2012 to let them
know Mike was complaining about pain, but a different kind of pain. He said it was in his muscles. They ordered scans and the pictures showed 2 new tumors right where the slight uptake was in the December scans. They ordered a needle core biopsy and the finding was that the Osteo had returned. This time the oncologist told us that mike had a year maybe two to survive. I had to fight with him to even suggest surgery. Finally the surgeon was consulted and he said he could do another internal hemi pelvictimy. Surgery was scheduled for September 2012. After 2 hours in surgery the surgeon came out to tell us that Mike did not have osteo after all, he had a new cancer called Radiation induced Rhabdomyo sarcoma. They stopped the surgery and 2 days later they did a external hemi pelvictimy. They amputated his right leg and pelvic
bone. He recovered from this surgery Quickly. I was upset because of the missed diagnoses they had been giving him the wrong chemo for months. He recently had 2 more tumors removed and has started on a new chemo. He seems to be doing well.
I need to raise money to help with travel and parking expenses when we go to Boston every 3 weeks for 5 days. Not only is it expensive but I miss work to be with him.
If we can raise enough money I would like to remodel our bathroom to make it handicap accessible. It would be a big help for Mike.
After everything he has gone through he does not complain or say why me. He is the strongest person I know and he is my hero.