Second Chance .Mac

A SECOND CHANCE

Michael Interdonato

Latest Updates

• Friday, May 1st – Happy birthday sweet Michael. 25 years ago today you entered this world and brightened our lives. Your memories still do each and everyday. We will always love you.

• Monday, November 3rd – Two sweet angels. One who left us 3 years ago today. Memories can be a wonderful thing. We miss you sweetheart! We all miss you very much.

"We will always love you!"

• Wednesday, October 8th – News from Rosie's dad yesterday from England about a research grant from the United Mitochondrial Disease Foundation (UMDF) to investigate ERT in MNGIE patients along with a research paper outlining the efforts at ERT in Rosie's attempt to try and beat this disease. We all continue to wish Clare well as she continues with her ERT trial.

• Research Grant To Investigate A Novel Therapy.pdf
• Carrier Erythrocyte EntrappedThymidine.pdf

We miss you sweet Michael as we approach your 3rd anniversary away from us.

• Saturday, May 11 – News from England this week where Clare is to begin an ERT trial – Enzyme Replacement Therapy. Hopefully, she'll be able to prove that this therapy can be an answer for MNGIE. Our thoughts and prayers are with you.

• Thursday, May 1st – Happy birthday "Sweet Michael". You would have been 24 years old today. "We will always love you."

• Thursday, April 17 – Very sad news from Spain this evening. Amadeu has e-mailed to let us know that Ramon has lost his struggle against MNGIE. Over the last couple of months engraftment issues as well as other complications made Ramon's struggle very difficult. One continues to hope that obstacles like these can be overcome, but having walked that road with Michael, one comes to understand that some things are just not meant to be. Our sincerest sympathies to Ramon's family and friends.

• Thursday, February 14 – A big "Valentine Hug" for a sweet and wonderful boy. It seems like a lifetime ago sweet Michael. It's only been a bit over two years. Why does it seem so long ago?

November 3, 2007
2 years ago we had to say goodbye.
We miss you sweet Michael.

• Saturday, September 22 – An email from Amadeu to let us know that Ramon has returned home after a 4 month hospital stay. His transplant appears to have been a success. We wish Ramon continued success as the months go by. How I wish my Michael could have had the opportunity to come home. He so wanted to get well. We miss you Michael so very much.

• Sunday, September 3rd – Summer is almost gone. I've been very busy at work. Being busy is a good thing. Danielle will be headed back to Savannah next weekend. We'll be childless again for awhile at least. We miss you very much Michael. Life is just not the same without you here.

Update: Ramon appears to be doing well. Engraftment is taking place with over a 50 percent chimerism thus far. He is experiencing less pain and making steady progress. We wish Ramon continued success.

• Saturday, June 30th – Just a brief note to wish Ramon well. He began his chemotheraphy on the 27th and is scheduled for his marrow infusion on July 6th. Hopefully, this "Birthday" will signal the beginning of a new life for Ramon.

• Saturday, May 28th – News from Spain. Ramon Vidal, MNGIE patient, has located a marrow donor and is scheduled for a bone marrow transplant the first week of July at the Hospital of Sant Pau in Barcelona, Spain. Amadeu Camps, his brother in law, was in frequent contact with us during Michael's hospitalization. We wish Ramon all the best.

• Tuesday, May 1st – A day at home for Marie-Cecile and I to work in Michael's Garden and to think about our sweet little guy. May Day, a day for Lilies of the Valley given as gifts to share with those you love. It was Michael's flower on his special day. Happy 23rd birthday Michael! We miss you. We will always love you.

The Lily of the Valley, also called the ladder to heaven, is the symbol of hope.

• Thursday, April 5th – An email from Dr. Hirano to let me know about an article published in the Sydney Morning Herald describing Jennifer Hill's ordeal with MNGIE. It shows just how difficult this disease can be from a diagnosis perspective. It appears from the article that Gabriella is doing well and is gaining weight. Read the article: FightAgainstTheUnknown.pdf

• Monday, March 19th – Sad news today in an email from Trish, a friend of Aaron and Jennifer Paris. Aaron passed away Saturday from complications of his disease, MNGIE. His funeral will be on Friday, the 23rd, a day which would have marked their 6 month wedding anniversary. Our sincerest sympathy goes out to Jennifer and their families. Aaron will always be with you in spirit Jennifer. Stay strong.

• Saturday, March 17th – Snow in the Northeast has delayed "Spring Break" for Danielle with flight cancellations. Luckily she managed to get a seat on the train which will get her home his morning from Savannah.

It will be nice to have a child at home again, even if only for a week. I thought I'd share this picture of Michael in the garden just a month or two before he got sick. Miss you Michael.

•Wednesday, February 14th – Wishing everyone the best on Valentines Day. I know I sure wish I could give the love of my life a real big hug. We miss you very much Michael.

• Thursday, December 14th – Just a couple of pictures to remind us of the good times. Michael so loved his nutcracker collection. Strange perhaps, but this holiday season seems to be more difficult than the last. Best wishes to all .

• Friday, November 3rd – It was a year ago today that Michael left us. What can a parent say on a day like this? Anniversaries like these are those which no parent should ever have to experience. Here are a few pictures of a sweet boy it appears God was not willing to wait for. We miss him vey very much.

Also, here is a link to a manuscript of an article that recently appeared in Neurology about Michael and Gabriella's transpants. It is entitled Allogeneic Stem Cell Transplantation Corrects Biochemical Derangements in MNGIE. Although the ultimate results are still unclear, the prospects for BMT appear to be very promising.

• Tuesday, October 31 – I have vivid memories of Halloween this time last year at Morgan Stanley. It was a very difficult day for me and of course for Michael. I wish I could go back to that day and give my sweet Mario a hug.

By the way, we finally decided on names for our two kittens. Michael would have loved Super Mario and Princess Peach. They were two of his favorite character's from the world of video games he loved so very much.

• Saturday, September 30th – Very sad news this past week when I learned from an e-mail that Rosie Robinson passed away from complications of her disease. She was 21 years old. Rosie's dad told me that she was the 'first' to be trialling Enzyme Replacement Therapy as a potential treatment for this horrific disease.

He also told me that the initial trial –dose– seemed to be very promising with a 30% decrease in toxic thymidine. Regrettably, Rosie was unable to return for a follow up dose which would have eventually led to a full dose of the replacement enzyme. ERT has been discussed as another very promising option for the treatment of MNGIE. Regrettably drug companies have not been very forthcoming in pursuing the development of this option due to the rarity of the disease.

It was too late for Rosie, who like Michael, gave all they could to try and escape the ravages of their disease. They were both pioneers on the forefront of research that will hopefully lead to a cure. Rosie's dad can be reached at hotrodcy@hotmail.com. To say the least we share their pain.

• Tuesday, September 12th – Not really sure about names as yet, but we're thinking about a combo like 'Bonnie and Clyde', or perhaps 'Ralph and Lauren'. Another little friend has entered our home. Sure wish Michael could be here to hug both of them. As of now our family is back to 5. We miss you Michael.

• Monday, August 21st – Rafi – A sweet being has entereed our household. We haven't gotten a name figured out yet, (her shelter name is Rathbone) but hopefully we will by the time we get a companion for her. She is a sweet kitten with a wonderful personality. I'm sure she will help to fill a void in our home.

• Wednesday, August 9th – The day of the 'transplant'. It was a year ago today – a day that was referrred to as Michael's birthday on 5 Tower. It represented a new beginning and a hoped for new life for Michael. Sadly, that was just not meant to be. I couldn't stop thinking about that day today.

I thought I'd share another picture of Michael and his sweet candy girl to commemorate what could have been his first birthday.

• Friday, July 21st – Michael has company. Candy took a turn for the worse this past week. I suppose it was time for her to visit Michael this afternoon. I'm sure he is with her now giving her "lots" of hugs and kisses. How he so loved his sweet Candy girl.

Update: Two photo galleries added to Michael's Garden.

• Sunday, July 16th – Just a quick note to acknowledge the generous donation in Michael's name to the Mitochondrial Disease Foundation by so many of Michael's friends at the Morgan Stanley Childrens Hospital. Thank you Debra.

• Sunday, July 9th – 'An anniversary of sorts' – an e-mail from Ria Hawks, transplant coordinator, sending her well wishes and reminding me that this time last year we packed the car and headed up to New York and the Ronald McDonald House.

It was truly a time of 'hope' and 'guarded optimism'. Hope that he might get better, kept Michael going. Without hope, life can be really hard. The alternative, doing nothing, was 'never' an option he would consider. We miss you Michael. We miss your 'strength' and your 'courage'. We also miss all the wonderful friends who tried so hard to make you well.

• Saturday, June 17th – I visited the cemetery this afternoon and took a few pictures of Michael's memorial plaque which was finally installed at his grave site this past week. It makes visiting so much more meaningful when you are able to see the person resting there. Michael is in a beautiful place at the cemetery (at the southeast corner of St Jude and St. Michael's avenues) and the memorial makes it really special. We love you Michael.

• Sunday, June 4th – Just a note to wish Andrew and Kathryn Conley the best. They got married last weekend in Atlanta. Andy, who was a paul bearer at Michael's funeral, was kind enough to ask me to be part of his wedding party and to act as a stand-in for Michael (who I know was there in spirit). Kathryn is hoping to get a position as a pediatric registered nurse now that she has graduated.

We also took the time to visit the Savannah College of Art and Design where Danielle learned that she had been accepted as we visited the campus. It's looking like Danielle will be spending some time in the next few years pursing her interest in animation at Montgomery Hall which houses over 800 computers in classrooms and labs.

• Sunday, May 14th – It's Mother Day, first one without Michael. It's difficult emotionally to deal with milestones like these. It's also been an interesting week given our cat Candy, who is 14 years old, has been ill. Kind of makes me wonder if Michael may want company.

Candy spent three days at Friendship Hospital for Animals. I will say it is a very strange feeling when your cat comes home needing subq fluids and antibiotics – Enrofloxacin, along with oral doses of Carafate, Zantac and an appetite enhancer. She is doing better at home. The memories that nursing my cat can bring back are simply amazing.

• Wednesday, May 3rd – A very special gift from Janice who surprised Marie-Cecile at work this morning. We planted it in Michael's Garden this evening exactly 6 months since Michael left us.

Janice writes ... "The Lily of the Valley plant that you see I saved from Michael's funeral service. I took it home and planted it in a 'special place' in the hope that it would survive and bloom again for you, as you see, it did!"

We love you Michael.

• Monday, May 1st – What can a parent say about the day your son would have turned 22 years old. It is very difficult to put one's feelings into words. I know for sure that the "hurt" will never go away. It was a day for us to spend most of our time thinking about Michael. Both Marie-Cecile and I took the day off from work to spend time with him in spirit. That meant a lot to us today. Here are a few images which crossed our path.

Thank you Barbara and Phyllis for the Lily's of the Valley. They are beautiful. The Lily of the Valley, also called the ladder to heaven, is the symbol of hope.

• Sunday, April 30th – Marie-Cecile puts many of the finishing touches (although it will never really be finished) on work in what we refer to as "Michael's Garden". The garden is home to a number of newly planted Chaste trees, Heritage River Birch and Muskogee Crape Myrtle. The theme of the flowers this year is all white and blue. I will try and get pictures posted when the garden has had a chance to grow a bit. We love you Michael.

• Saturday, April 29th – We attend the French Mass at St. Jane Frances de Chantal in Bethesda, Maryland, where a mass was said in Michael's name. The 6:30 PM mass was spoken in french and was full of children from the parish and the French International school dressed in berets, pleated shorts and red, white and blue scarves. Both the church (renovated since our last visit years ago) and the ceremony were beautiful. Thank you Christine for your kind intentions.

• Saturday, April 1st – Just a note to give Michael's sister Danielle an opportunity to show things she's been working on in her University endeavors.

Art by Ayla – website to showcase her artwork
FREEVOICEOnline – web designer – Journalism program

• Monday, March 27th – A weekend visit to New York provided us the opportunity to visit old friends at the Morgan Stanley Children's Hospital. It was an interesting experience to spend time again in my home away from home. Below is a link to pictures I took while visiting a place I will never forget. I will be posting additional pictures to galleries in the days to come.

Morgan Stanley Photo Gallery

• Thursday, March 23rd – Thought I'd share a few of Michael's favorite songs – songs which he included in a playlist he listened too during his transplant in room 501. 20 weeks ... seems almost like 20 years.

Concerning Hobbits.mp3
        by Howard Shore
Evenstar.mp3 – Featuring Isabel
        Bayrakdarian – by Howard Shore
Into The West.mp3
        by Annie Lennox

• Friday, March 3rd – Let me know if you'd like to "Slow Dance." A beautiful poem sent to me by my niece Alexis. A little something to commemorate 4 months since our Michael left us. Michael taught us a lot about the true meaning of what it means to be alive. Take the time in life to slow dance.

• Sunday, February 26th – Spent an afternoon at the Library of Congress yesterday looking through newspapers. We found the article about Michael that appeared in the Winston-Salem Journal back on June 21, 2005. See sidebar for full article. The library still hasn't received issues of the Arab News where a pick-up of the Post article appeared.

• Saturday, February 25th – Thought I might post an easier to find link to Michael's Custom Cards – creative alias 'Mork Stryydr'. He so enjoyed making these. Thinking of you Michael.

• Friday, February 3rd – Why is it that anniversaries are always more difficult? It is 3 months today since Michael left us. It seems so much longer. To commemorate that day, I thought it might be nice to post some pictures of Michael. These are a few photo's we've been looking over as part of an effort to design a grave marker for his grave site – 'Lasting Memories' Memorials. We submitted a design proposal today and will wait to hear from the bonze works company to know if it is a go. Matthews Bronze is offering a new process and Michael is the first to use it at Gate of Heaven cemetery.

I thought I might also share a link to Rosie's website. She said she'd be happy for me to do so: http://spaces.msn.com/rosie-rocks We're thinking of you Rosie!

• Thursday, January 12th – It's been 10 weeks since Michael passed and I thought I'd share a portion of an e-mail that had 5 lessons of how we might treat people. I thought the last one was especially wonderful.

"Many years ago, when I worked as a volunteer at a hospital, I got to know a little girl named Liz who was suffering from a rare and serious disease. Her only chance of recovery appeared to be...– read the rest here "Giving When It Counts". Michael, how I wish that could have been possible, even if it meant giving you all of mine.

Update: We heard from another patient today who was recently diagnosed with MNGIE. A 21 year old woman (girl) who lives in England. Do not give up hope Rosie. You can beat it!

• Sunday, January 1st – It's New Years Day, 2006. One might say that 2005 was a very difficult year for us, and it was. However, even with all the hard and difficult times, it was a year where we could at least spend most of our time with Michael. The New Year, regrettably, won't provide us with that opportunity. We will miss him very much.

On an up note, I did want to take this time to let you all know that Gabriella –from Italy– is doing very well as per my last discussion with Dr. Hirano. Her transplant was successful. Her TP enzyme activity is up and the level of the toxic nucleosides are dramatically lower. We all hope to learn soon whether or not she has actually beaten this disease, and if she will begin to show hoped for clinical improvement in her condition. It would mean a lot to us to know that Michael did not undertake his therapy in vain. Good news from the efforts undertaken by Michael and Gabriella with respect to a potential cure for this "terrible disease" would make this a very wonderful year indeed.

On a very sad note, I did want to acknowledge publicly that Jeff Gardner, a close friend of Michael who was a pall bearer at Michael's funeral, died unexpectedly on Wednesday, December 28th. Jeff was a driving force in running a charity Lord of the Rings card tournament to raise funds for Michael and was instrumental in getting our website publicized before Michael got insurance coverage. Jeff was a constant pillar of support for me during Michael's illness.

Jeff, my friend, you will be missed. Hopefully, you and Michael are now together again watching over all of us.

• Sunday, December 25th – It's Christmas Day and very difficult for us without Michael. Given we cannot spend the day with him, I thought we could at least spend some time by watching a video taken at the hospital pre-transplant. This video was made on July 26th as part of an examination to document Michael's medical condition. Dr. Hirano was kind enough to share it with us recently, and I thought it would nice to share it with all of you who have followed his struggle.

Michael at Morgan Stanley Childrens Hospital
Pre-Transplant – Click to play (27.2 MB)

– Click here for a smaller video (9.6 MB)
This was a difficult video to watch as a family. I know we will treasure it always. We love you Michael.

• Saturday, December 24th – It's Christmas Eve and I thought it might be nice to share this poem sent to me by Mary Jane Vasilich who also lost a child to MNGIE. You can read about her daughter Kaitlin's struggle at the following url: http://www.mngie-hope.com. Here is the link to the poem First Christmas In Heaven. Thank you Mary Jane.

• Thursday, December 15th – Some friends have asked me to post some of Michael's "fiction" to the site so they could read it. Here are two pieces he had fun with as part of an online group that enjoyed writing stories about character's associated with video games and books they loved. These are excerpts from material he wrote about an infamous bounty hunter – Dark181st.
Area 51.pdf
C.I.S.O.D. Establishment.pdf

The work is finished enough so I personally feel comfortable sharing it. He just turned 18 years old at the time he wrote these – just a few months before he got sick. Hope you enjoy them.

We miss you Michael.

• Thursday, December 8th – For those of you who were not able to attend the funeral, I thought it might be nice to post a song sung by our vocalist LaVera Day. Although not one of the selections we chose for the ceremony, it does show the power and beauty of her voice. Enjoy!
– If I Can Help Somebody – LaVera Day

Update: And yet another song you might enjoy.
– Will You Let Me Be Your Servant – LaVera Day
click to play – a high speed connection helps

• Saturday, December 3rd – It has been a month since Michael passed – still very hard to believe. To commemorate that eventful day, I thought it might be nice to share the sentiments of 8 year old Vanitha, younger sister of one of Michael's close friends, who put a photo of Michael in her notebook, drew an angel next to it, and then went on to write:

"Dans les yeux de Michael, il y a la plus grande gentillesse du monde et maintenant, Michael est un ange très special qui nous aime et nous protège depuis le Paradis parce qu’il fallait que sa gentillesse serve à tout le monde."
– Translation –
"In Michael's eyes, there is the biggest kindness in the world and now, Michael is a very special angel who loves and protects us from Paradise, because his kindness was meant to profit everybody."

Thank you Vanitha. Michael would be proud to know you wrote that about him. I know I will never forget it. "Tu es aussi un petit ange sur terre."

Update: Juste de l’autre cote du chemin by Charles Peguy.pdf – That is really very special Christine!

• Thursday, November 24th – It is Thanksgiving day, and although it is very difficult for us at the moment, I did want to take a minute to thank everyone who came to Michael's funeral and who have sent their condolences and well wishes over the past three weeks. It has meant the world to us.

I'd also like to share a poem sent to me by one of Michael's home care nurses here in Washington DC.

"A butterfly lights beside us like a sunbeam, and for a brief moment it's glory and beauty belong to our world. But than it flies on again, and though we wish it could have stayed – we feel so lucky to have seen it."

Thank you, Wanda. You are one of the many wonderful people we have met along the way. We can only hope that Michael is looking on with a smile.

Update: – November 28th
Not the same rendition as our vocalist LaVera Day, but I thought this rendition of one of the hymns sung at Michael's funeral would be interesting for some of you. It is restful.. and I think Michael would have liked it.
Amazing Grace by
click to play – a high speed connection helps

Warm regards,
Peter Interdonato

Michael's Story Is Now Complete

• Thursday, November 3rd – Every story has a beginning and an end. Regrettably, not all stories have a "happy" ending. I can't begin to tell you how it saddens me to have to tell you that Michael died of respiratory failure this evening at 7:45 PM. He died peacefully surrounded by his mom, dad and sister Danielle. He is now in a place free from pain. For that we are grateful.

Thanks to all who have supported Michael throughout his struggle. You have all made this ordeal that much more bearable.

May 1,1984 – Nov. 3, 2005

Update:
A funeral mass will be held for Michael at the Church of the Little Flower in Bethesda, Maryland on Saturday, November 12th at 12 noon. After the Mass, Michael's remains will be cremated and later put to rest in a private ceremony at the Gate of Heaven Cemetery in Silver Spring, Maryland.

Funeral Program.pdf
General Intersessions.pdf
Eulogy_JohnParmentola.pdf

All White Flowers – Church
The Enchanted Florist, Alexandria Virginia

Little Flower Church
5607 Massachusetts Ave
Bethesda, MD 20816
(301) 320-4538

Gate of Heaven Cemetery
13801 Georgia Avenue
Silver Spring, MD 20906
(301) 871-6500

In lieu of flowers sent to the church, the family would prefer that you send a donation in Michael's name to the United Mitochondrial Disease Foundation.

United Mitochondrial Disease Foundation
8085 Saltsburg Road, Suite 201
Pittsburgh, PA 15239 USA
Phone (412) 793-8077

Washington Post Obituary:
Michael Interdonato, 21; Victim of Rare Disease.html
Michael Interdonato, 21; Victim of Rare Disease.pdf

Gazette Obituary
Bethesda man, 21, dies after struggle with rare disease html

"Are we going to beat this Dad?"

"We tried Michael. We gave it our best!
We will always love you."

“At least now you are in a place free from pain.”

• • • • • • • •

• Monday, October 31st – It's Halloween here on 5 Tower today. I just thought it might be nice to post some Halloween pictures of Michael in what seems like a lifetime ago. How I wish we could revisit those days.

• • • • • • • •

• Friday, October 30th – One might ask what more can a disease take away from a person afflicted with it. Michael has lost his ability to walk or, for that matter, even sit in a chair without the risk of falling over. He cannot use his hands or feet or even move his legs in bed with out asking for help. He is unable to eat or drink and has more recently even lost his ability to hear without having someone speak directly into his ear. He has difficulty breathing without the use of respiratory support and relatively high levels of oxygen. Communicating with others has also become difficult now given the dryness in his mouth and throat making his speech difficult to understand.

In spite of it all, Michael had at least been able to keep his "hope" and "spirits" up over the past 3 years. He had been able to endure all the disease could offer without bitterness or complaint. I will tell you that as a parent this process has been very difficult to watch, but has always been morally strengthening to see him fight on no matter how hard things would get. A "trooper" as many of his nurses would refer to him.

These past 3 and a half months have been especially difficult. It has been a time of one procedure or one medical issue after another. Chemotherapy had been very hard for him as have all the demands of supporting the various medications, breathing tubes, chest tubes, catheters, OR and PICU visits, x-rays, CAT scans, ultrasounds and the like.

Sadly, this past weekend, it appears that the disease may have ultimately claimed even Michael's ability to cope mentally. MNGIE can progressively affect the mental well being of those afflicted especially in the advanced stages of the disease. Possibly it may be just the result of all the stress associated with the failure of the transplant and the reality that there is little hope for ever returning to the transplant process, but for now at least, it appears that Michael has retreated into a world of his own, one filled with nightmares, worries and hopelessness.

At this time I want to thank all of you who have followed Michael's struggle and who have offered both moral and financial support. We as a family have been strengthened by your help. Sadly, this will likely be the last update to this site for some time. I see little reason to continue as the problems with Michael's health have now reached a point where the ultimate end to Michael's struggle is not a question of "if", but instead only a questions of "when".

I also want to take a moment to offer a very "special thanks" to all the medical professionals who have and who continue to give so much of their energy and time to try and help Michael. I have developed a love and admiration for this profession which I will never forget. It would be an impossible task to list all those who have meant so much to us during this ordeal.

Sincerest regards,
Peter Interdonato

• • • • • • • •

• Friday, October 14th – Regrettably, these are not "good news" updates. How we wish that were different, but the reality of Michael's medical condition is not good. Michael is continuing to struggle with respiratory issues. He remains on bi-pap around the clock. It is looking more and more like this may become a long term problem which we can only hope will get better as Michael regains his strength.

Michael has lost a lot of weight since admission which has more recently been complicated by very high triclyceride levels which have forced the nutrition team to withhold the lipids from his TPN. Lipids are a rich source of fat and calories. We are contemplating having a gastrostomy tube placed to by pass Michael's stomach and allow him to be fed in order to regain weight and hopefully rebuild his strength. This could reduce his dependence on TPN which is contributing to problems with his liver and a number of other organs.

Another CAT scan and ultrasound have confirmed that Michael's blood flow in his portal vein is continuing to flow in the correct direction. His dependence on TPN and the impact of the chemotherapy have all had a major impact on the health of his organs.

Lastly, we are beginning the process of considering different rehabilitation hospitals to hopefully help with Michael's recovery. Children's Specialized Hospital in New Jersey and the Hospital for Sick Children in Washington DC are both under consideration.

•Friday, October 7th – Results of an ultrasound yesterday have raised some serious concerns about Michael's liver. He's is scheduled for a liver biopsy this afternoon and will most likely spend the weekend in the PICU again. A bronchoscopy is also scheduled to evaluate the status of Michael's lungs and to see if there is any further infection. Suctioning of some of the mucus which Michael has been having a hard time coughing up will most likely be done at that time.

Nothing about this illness has ever been easy. We can only hope that Michael will continue to bounce back from whatever challenge is placed before him.

Update 1:00 PM: The OR procedure has been postponed until Monday. It was felt by the medical team that it would be better to wait for results of viral studies before subjecting Michael to a surgical procedure prematurely.

Update: 5:30 PM: Results of another abdominal ultrasound were encouraging this afternoon given the blood flow in Michael's portal vein is now flowing in the correct direction. The doctors were encouraged with the results and have another ultrasound planned for Sunday. It appears the decision to wait to do the liver biopsy was a good one. We hope that the liver abnormality was a transitory one and that we will be able to focus back on Michael's respiratory issues.

• Sunday, October 2nd – Just a few pictures of Michael, Kristen and Tracey. Michael has had a very rough time as you can probably tell from the pictures, but God willing he will find the way to get stronger and be able to revisit the transplant process.

Kristen and Tracey Michael in Bed

Tracey, Michael and Kristen

• Saturday, October 1st – It has been a difficult time emotionally for the past couple of weeks. Updating the site has not been a priority. It's been tough accepting the fact that Michael's only option now is to hopefully get strong enough to revisit the transplant process. That will not be easy.

Respiratory wise Michael has been struggling. He appears to be getting over his infection related to the pneumonia, but has a number of areas of atelectasis in his lungs. These have resulted in difficulty maintaining his oxygen levels requiring him to remain on respiratory support. We are concerned with the slow progress of his recovery, He remains on Bi-Pap with only small breaks on either a breathing mask or nasal cannula.

Today, I had hoped to have some pictures posted of Michael and some of his nurses. I will try to get that done tomorrow if possible.

Relating to MNGIE, Gabriella, a patient from Italy, is expected to arrive in New York for her transplant this coming week. She and her brother (the donor) will soon be beginning the process of getting ready for harvesting bone marrow and beginning the chemotherapy and transplant process. We hope to get to meet her sometime this week. We wish Gabriella success in her quest.

• • • • • • • •

UPDATE: 11:00 PM

• Thursday, September 15th – I know there are a lot of you following updates to this site who care very much about the well being of Michael and his transplant. I can't begin to tell you how your words of encouragement and support have meant so much to all of us and especially to Michael. I can only imagine how important they are to those of you also afflicted with MNGIE. Aaron, Ramon, Jim, Gabriella ...we wish you strength in your struggle as well.

Sadly this evening after meeting with Dr. Garvin and members of the medical team, we got very disappointing news with respect to the results of the 30 day chimerism. The success of the transplant with respect to the engraftment of the new donor t-cells has been a worry ever since Michael's white blood count recovered very prematurely a few weeks ago. It appears that the level of engraftment is extremely low and although Dr. Garvin and the team will be removing some of the immuno suppressant drugs to try and encourage further engraftment, the potential success of this procedure is not considered to be very high.

It is looking more and more like Michael's remaining option may be that of considering going back to chemotherapy and re-transplant. This option will most probably be assessed at the 12 week mark. It will await results of the 60 day chimerism, as well as an assessment as to whether of not Michael would be strong enough to undergo the procedure again.

I will be posting additional updates to the site in the days ahead.

Where there is life ... there is hope. We will not give up the struggle to try and beat this disease. I can't begin to tell you that even with all the bad there is always a bright side. My ability to spend almost all my time with Michael has been wonderful.

A very special thanks to Kristen and Tracey who have been more than nurses to Michael.

• • • • • • • •

• Thursday, September 15th – Michael's respiratory status is improving. He is being alternated on and off between Bi-PAP and CPAP. He pneumonia is clearing and hopefully he'll be able to shed the respiratory support soon and move to a nasal cannula.

Dr. Hirano is also planning on evaluating another blood sample for thymidine phosphorylase (TP) enzyme activity on Monday. Dr. Hirano is anxious (as are we) to confirm the increase in TP activity, but must wait until next week due to the fact that Michael received platelet infusions to control some bleeding in his urine. Currently Dr. Hirano's laboratory is assessing thymidine and durioxidine levels for the blood samples taken thus far.

• Monday, September 12th – Potentially very encouraging news with respect to the thymidine phosphorylase (TP) enzyme activity. Dr. Hirano calls to let us know that the TP activity level from a blood sample taken on Saturday (9/10/05) jumped from 15.6 to 103.6. We can only hope this is also reflective of the degree of donor t-cell engraftment taking place as we move toward the results of the Day 30 chimerism. Michael's platelet count at the time of the blood sample was close to 72,000 which is well below normal platelet levels.

Normal TP activity levels are approximately 660 (+ or – 220) in people without a defective gene. Parents of MNGIE patients with only one defective gene live perfectly normal lives (free of symptoms) with 30 to 35 % normal TP activity levels. Michael's mom and dad have TP activity slighly over 300 as measured from blood samples taken a couple of weeks ago.

We are still very cautious about engraftment and continued success with TP activity especially as it relates to the level of the toxic thymidine and durioxidine. At the least this seems to signal that the process may (God willing) be moving in the right direction.

• Thursday, September 8th – Day 30. Another blood sample is taken to determine the degree of chimerism at the traditional 30 day mark. These results will be very important as they will shed information as to the success of the transplant. We are still awaiting results of the chimerism from the blood sample taken last week. We can only hope that engraftment is taking place and that the transplant will ultimately be successful. Donor cell engraftment was 4% at the two week mark.

In addition, a blood sample taken by Dr. Hirano earlier this week was processed for enzyme activity on Wednesday. The results of the assessment of the thymidine phosphorylase (TP) activity (using HPLC detection which is more sensitive than standard spectrophotometric detection) was as follows:

Sample date – TP activity (nanomoles/hour/mg-protein)
10/7/04 – 6.2
8/29/05 – 5.9
9/6/05 – 15.6

Dr. Hirano will repeat the enzyme assay next week. These results are still very preliminary. They represent early results from platelets currently active in Michael's body which represent only a portion of the donor cells. We are well aware that these levels are far from what they would need to be to affect Michael's disease in a meaningful way.

Point of Reference: Michael is approaching 6 months (180 days) of hospitalization since mid-September of 2004. This is one milestone we wish were not the case but does point to the chronic nature of his disease.

• Wednesday, September 7th – Michael was moved back to the BMT floor late Sunday evening. We are now in room 503. Michael continues to deal with respiratory issues associated with his pneumonia. Cultures from the bronchoalveolar lavage have grown out a pseudomonas bacteria which is now being treated with antibiotics (tobramycin and cefepine). Michael has lost a considerable amount of weight. We are hoping he will be able to put these respiratory issues behind him soon.

• Sunday, September 4th – Michael is taken off the respirator on Saturday. He was incubated for a little over a day following the bronchoscopy and bronchoalveolar lavage. A significant amount of mucus was found in his right lung and a portion of that removed during the procedure. We are awaiting to hear if any of the many cultures are positive so anti-biotic's can be better directed at the cause of the problem. He is doing much better respiratory wise now and is back on the bipap. We hope to be getting back to the BMT floor later today or tomorrow.

A number of other health issues are also of concern. Michael has gotten considerably weaker after having been weaned down on the solu-medrol. He has trouble moving his legs and fingers now. The almost 2 months of hospitalization and bed rest have made him a lot weaker. This process has been a very difficult one for him. Dr Garvin has elected to increase the steroids again to try and improve his strength.

• Thursday, September 1st – Headed back to the PICU this evening. Issues with Michael's respiration have reached the point where a Bronchoscopy and a Bronchoalveolar Lavage is planned for tomorrow. This has been a tough week with respect to health issues Michael has had to deal with. Hopefully I will continue to have an internet connection in the PICU. At the moment we are only expected to be there a day or two.

Another chimerism has been ordered today with a jump in Michael's white blood cell count. Another is planned at the day 30 mark as well.

• Monday, August 29th – Day 20. Almost three weeks since transplant. Dr. Gavin tells us that the results of the initial chimerism put engraftment of the donor t-cells to be around 4 to 5 percent at the 2 week mark. At 30 days another chimerism will be done. The degree of engraftment can vary significantly from one patient to another.

On a down note, Michael experienced a lot more trouble with his respiration on Monday. He began having trouble breathing and was beginning to stat in the low 90's even on the CPAP. A step up to a BiPAP was made. The team is evaluating whether of not to go ahead and place another chest tube. Seems like Michael has been having to deal with respiratory issues since his aspiration prior to chemotherapy. Hopefully things will stabilize. We'd hate to have to spend more time in the PICU.

• Saturday, August 27th – Day 18. We continue to wait for the results of the chimerism. Definitely a stressful time when test results can mean so much for the potential outcome of the procedure. Another chimerism will be done at the 30 day mark.

Michael encountered some set backs on Friday with a reoccurrence of breathing issues. Another CAT Scan was done to check his lungs. It appears that fluid continues to accumulate in and around his right lung. The team decides that a chest tube will not be necessary at this time, but they will be treating Michael for pneumonia which may in fact may be the root cause of the problem, He is back on the CPAP for a good part of the day and has been put on the antibioticsLevaquin and Vancomycin to treat the problem.

In addition, issues of increasing muscle weakness are becoming evident due to the weaning of the solu-medrol (steroids) and prolonged bed rest. Steroids are a potential long term infection risk which is worrisome in immunosupressed patients. A re-evaluation of the steroids is being considered at this time. Michael has also lost most of his hair.

Lastly, blood samples are drawn by Dr. Hirano from Michael's mother and father to check their TP activity. Parents of MNGIE patients generally have about 35 percent normal TP activity yet live normal lives without symptoms.

• Thursday, August 25th – Dr. Hirano has some hopeful news with respect to the thymidine phosphorylase (TP) activity measured from a blood sample taken from Michael last Monday. The blood showed TP enzyme activity at 58 nmol/hr/mg. Michael's enzyme activity a year ago was 28 nmol/hr/mg and just before transplant at only 19 nmol/hr/mg. Dr. Hirano emphasized that it is to premature to infer anything from just one sample. We can only hope that the trend will continue to rise as additional samples are measured. Another blood draw is planned for Monday. Normal (average) activity is about 667 nmol/hour.

It is critical that the TP activity increase to an acceptable level, and furthermore that the levels of the toxic nucleosides, thymidine and deoxyuridine, are reduced to negligible levels.

• Tuesday, August 23rd – Day 14. Two weeks since the transplant and Michael's blood counts are up. It is not known if they are do to his own cells or whether or not the new T-cells have begun to engraft Although it is early for engraftment to have occurred, blood was drawn and sent out to check for chimerism. We should know more about the current composition of the donor vs host cells on Friday or early next week. There is concern that with such an early recovery of blood counts the potential for graft failure exists.

In addition, Michael undergoes another audiogram. The word is that his hearing did get worse in both ears. Many of the transplant medications can affect hearing. His neuropathy is also contributing to the problem.

• Monday, August 22 – Michael gets his new broviac. It is definitely nice to have only one line of IV access as opposed to three. It is now much easier to get him in and out of bed. Michael's hair is starting to fall out.

Dr. Hirano has requested a blood sample to begin to see if there is any increase in thymidine phosphorylase (TP) enzyme activity as a result of the current platelet composition. The expectation is that it is still too early to see any significant change in activity. We are also being told that if Michael's blood counts remain up, he may be discharged from the hospital soon and return to the Ronald McDonald House. At that time we would be visiting the oncology clinic at the hospital as an outpatient on a regular basis.

• Saturday, August 20th – Day 11. Michael had his chest tube removed on Friday following x-rays which showing significant improvement in his lungs. Monday is now set as the date for the insertion of another broviac.

Michael's white blood count is also increasing which tends to show his bone marrow is recovering somewhat from the chemotherapy which may allow him to come out of isolation. I'm told it's probably too early for engraftment of the new t-cells. A test to check for chimerism (T-cell engraftment) is normally done at the 1 month mark. Early recovery of blood counts could signal potential problems with engraftment.

• Thursday, August 18th – Michael is doing much better. He is more alert and breathing more comfortably. We are awaiting a confirmed date for the OR (operating room) so he can get another broviac. Juggling all the IV and picc line support he has at the moment is a bit challenging especially when trying to get him out of bed. Michael is getting to be a bit "boring" as some of the nurses refer to it. That is generally a good thing.

• Tuesday, August 16th – We are now Day 7. Seven days post transplant. Michael has completed his first week, Although it has been a bit bumpy, I am told that is the case for many of the patients. Happily, Michael continues to improve. He is more awake, is mostly on the nasal cannula during the day, and the drainage from his chest tube continues to slow down.

It will be at least a couple more weeks, perhaps as many as 4 or 5 before we can expect to know whether or not the enzymatic correction desired from the production of new platelets within the bone marrow has begun to take place. We are now in a holding pattern waiting for engraftment, and hopefully a minimum of GVHD. Stress relating to these issues sort of comes with the territory. We continue to take one day at a time and pray for the best.

• Monday, August 15th – Michael's lungs have been improving over the past couple of days with his oxygen levels remaining near 98. He is beginning to take breaks from the CPAP, and is using just a nasal cannula His chest tube remains in place under suction, but the amount of fluid draining has decreased significantly. Dr. Garvin appears to be pleased with his progress. The x-rays show continued improvement in his lungs and thus far there has been no indication of any infection.

On a down note, Michael does encounter a problem with his broviac, when it is accidentally caught on his wheel chair when putting him back into bed and is pulled out. A PICC line was inserted in his arm by an IV nurse as an interim fix while a surgery to replace the broviac will most likely be scheduled for tomorrow. Getting Michael in and out of bed is a real challenge given all the tubes his is currently connected to.

• Saturday, August 13th – Overnight, Michael continues to develop respiratory distress due to the fluid in and around his lungs. He is put on a nasal CPAP to help with his breathing and oxygen levels in his blood. He is also given more lasik to help with fluid reduction. Michael was extremely tired Friday sleeping most of the day. The low red blood counts have not been helping.

Update – Dr, Garvin informs us that he believes it is best to have a chest tube thoracostomy procedure done to remove the fluid buildup in Michael's chest which is keeping his right lung from inflating completely. The procedure was performed under local anesthesia by two surgeons and took about 30 minutes. Close to 700 cc's of fluid was removed.

Michael is on so many IV fluids and medications that his body has been having a hard time processing it all. Hopefully this will speed up Michael's recovery and more importantly head off other potential problems. This is not going to be an easy ride.

• Friday, August 12th – Good news with respect to the CAT scan this afternoon. There is no evidence of infection in Michael's lungs. There is fluid, but I am told that this can occur in a number of patients after transplant and is manageable. Also, the scan did not show any evidence of liver disease which is always a major concern. Michael's bilirubin levels had been up which is a worry. The trend at the moment is down so hopefully that won't be an issue.

The temperatures Michael seems to run from time to time are still a subject of concern given they might indicate that there could be an infection brewing. Around midnight, Michael spikes a fever of 103.

• Thursday, August 11th – The road gets bumpy for Michael again. He begins by having an increase in pain requiring some extra doses of pain medication overnight. He also runs a fever, begins retaining some fluid (concentrated urine output along with some foot swelling) and encounters a bit of respiratory distress. A chest x-ray and ultra-sound are ordered as well as lasik. Issues of some fluid in Michael's lungs results in a CAT scan of both the lung and abdominal area this evening.

I've been told that some of the pain may be a result of lingering effects of the Tymoglobulin (ATG). I've come to learn that ATG is one of the chemo drugs that can cause serious reactions even days after the drug is administered. We wait for the results of the CAT Scan.

• • • • • • • •

•Tuesday, August 9th – It's "Michael's Birthday", as they refer to it here on 5 Tower, "The Day of the Transplant". We can only hope it is truly a day that represents the first day of a new life for Michael.

We begin the day at 1 AM in the morning moving from room 512 to room 501. This room is much safer from an isolation perspective with double entry doors, positive air pressure and air filtration to help prevent the potential influx of germs and bacteria. We finally get settled in near 2 AM. All guests to the room now must wear masks and wash their hands. Michael will be immuno-suppressed for weeks. The transplant is scheduled for late morning or early afternoon.

2:30 PM – To the theme "May It Be" by Enya from the Lord of the Rings soundtrack, Michael's transplant proceeded and was complete in less than 30 minutes. BMT's are not surgery's amounting to little more than a speedy blood transfusion. We now must sit and wait for the new T-cells to engraft and to provide the needed enzymatic activity missing in Michael's body. We hope and pray that there will be no severe complications and that everything will proceed from here in a positive way.

• • • • • • • •

• Monday, August 8th – Another 8 hours of Thymoglobulin followed by an IVIG (Intravenous immunoglobulin) infusion (2 to 6 hours). This is the last day of chemotherapy with the transplant scheduled for tomorrow. Hopefully things will be getting better from here. Michael had a better day Sunday although he did have a serious bout with nausea around 4 AM when he almost threw-up. (T – 1)

•Sunday, August 7th – Michael has a really tough time with the chemotherapy on Saturday. He struggles throughout the day, is extremely tired with a general feeling of being sick. He has a number of bouts of nausea which results in the need for the use of NG suction to relieve his discomfort. He begins his day with a couple of units of blood due to anemia followed by chemo which doesn't start until close to 6PM. Around midnight Michael begins to feel somewhat better. (T – 2 days)

• Friday, August 5th – Michael begins Thymoglobulin. Michael's white blood cell counts are dropping. I am told the chemo is working. Michael does struggle a bit with a fever, as high as 103, and chills during a portion of the infusion which takes place over 8 hours. Hopefully he will continue to tolerate the drugs without any major problems. Tomorrow they will add cyclophosphamide. (T– 4 days)

• Wednesday, August 3rd – Chemo continues with Michael's second dose of Fludarabine. Tacrolimus will continue each day and even post transplant. So far Michael is tolerating chemo well. Thymoglobulin (ATG) and Cyclophosphamide will be added to the chemo schedule soon.

• Tuesday, August 2nd – Chemotherapy begins with the application of Fludarabine and Tacrolimus. The chemo regimen will continue for 7 days given Michael will be undergoing a nonmyeloablative transplant. The actual infusion of T-cells from the cord blood is scheduled to take place next Tuesday, August 9th. (T – 7 days)

Michael has overcome 3 hurdles thus far with the acquisition of health insurance coverage, the admission to the Morgan Stanley Children's Hospital, and the start of the chemotherapy– transplant process. He has two major hurdles remaining with the need for a successful transplant, and lastly, the need for the new T-cells (blood system) to actually have a major impact upon his disease. The next few weeks and months will be critical.

Dr. Hirano and Dr. Garvin are optimistic that with a successful transplant Michael will have a good chance to see significant improvement in his condition. We can only hope that they are right. We ask for your prayers.

• Saturday, July 30th – We are told that Dr. Garvin has issued orders for chemotherapy to start Tuesday, August 2nd. We are pleased that testing has gone well and are anxious to move forward. We are fully aware of the risks involved in this procedure. It will certainly be a stressful time for all of us.

• Friday, July 29th – Michael undergoes a PFT (pulmonary function test) and a gastrointestinal motility study along the line of a EKG, but referred to as an EGG. The procedure is research oriented but was something Dr. Hirano and Dr. Garvin thought might be useful as a baseline study to measure hoped for improvement in Michael's motility after the BMT.

• Thursday, July 28 – Heart ECHO and EKG are done. A PFT is scheduled for Friday. The BMT coordinator is hopeful that we are on schedule for the week of August 1st. All these tests are very stressful for the both of us.

.• Wednesday, July 27th – We learn from infectious disease that treatment for Michael's fungal colonization may only require 10 days of anti-biotic treatment which could signal the start of chemotherapy as early as next Monday. Michael also undergoes a CAT scan of his lungs and abdominal area. Retesting of a number of tests done in Washington are scheduled. A creatinine clearance is begun as well as scheduling for a heart ECHO and EKG. Under Dr. Garvin's protocol, all pre-bmt testing must be done within 30 days of the start of transplant.

• Tuesday, July 26th – Dr. Hirano pays Michael a visit with his video camera. Michael is given a neurological examination while being videotaped to provide a visual baseline of Michael's condition pre-transplant. Later that evening we are moved to a single room, # 512, after a busy day of visits from doctors.

•Monday, July 25th – Dr. Garvin tells us he is awaiting a consult with infectious disease to see how long treatment with anti-biotic's needs to be before chemotherapy can start. Michael is doing much better and no longer needs oxygen or respirator support. He appears to have returned to baseline prior to his problems last week.

• Saturday, July 23rd – We got a confirmed positive for a fungal bacteria from one of the cultures taken from Michael's lung ... so essentially we are talking a couple of weeks on antibiotics before chemotherapy can begin. We wait to hear from Dr. Garvin what the plan will be with respect to the next couple of weeks. This is a disappointment but nothing about this process has been easy. On a positive note, Michael appears to be returning to baseline pretty quickly which is a good sign.

• Friday, July 22nd – Michael continues to improve and is moved back to room 509 on the BMT floor. We are awaiting a new plan of action on Monday with respect to when chemotherapy might begin. We can only hope that things will now proceed positively without any further surprises. We are hopeful that without a positive culture chemotherapy might begin at the end of next week.

• Thursday, July 21st – Doctors are pleased with Michael's progress. Michael has the breathing tube removed and is placed on a smaller respirator (with a breathing mask). Michael continues to improve during the day and is told he may be returning to the BMT floor soon. One troubling development has to do with a potential indicator that a possible fungal infection (in Michael's lung) might be a possibility . There have been no positive cultures at this point. A positive fungal infection due to the aspiration could delay chemo for a couple weeks.

• Wednesday, July 20th – Michael continues his stay in the PICU sedated with the respirator. X--rays are taken and show that Michael has aspirational pneumonia.We are told that Michael is responding well to treatment. Later that day he is slowly weaned off the sedation and wakes up late evening.

• Tuesday, July 19th – Tuesday morning Michael throws up again. A major set back occurs when he aspirates some of the vomit and has trouble breathing. He is rushed to the PICU (pediatric intensive care unit) when the oxygen levels in his blood fall into the 70's and he runs a fever of 102.4. Michael is sedated, given a breathing tube and placed on oxygen with the support of a respirator.

• Monday, July 18th – Michael encounters a set back in his stay at the hospital when he wakes up, feels nausea and vomits. We are not sure what caused this event given he has been so stable over the past few months from a gastrointestinal perspective. We suspect the oral doses of the anti-biotic Bactrim may have been responsible. Michael continues to have a rough day with stomach pain and nausea.

•Saturday, July 16th – Chemotherapy has be rescheduled to begin Tuesday or Wednesday until a CAT scan can be done to be sure there are no other issues associated with the varacies on Michael's spleen. Dr. Garvin is confident that everything will be fine. A gastrointestinal consult has also been ordered to see if contrast can be used in the scan. Barium which is normally used for these scans was a source of severe gastrointestinal issues during Michael's last hospitalization.

• Friday, July 15th – We are finally admitted to the Bone Marrow Transplant unit (5 Tower) in the Children's Hospital . Michael is in room 516. Chemotherapy is tentatively scheduled to begin on Monday. We are made to feel very welcome by all the doctors and nurses. On a side note, we are finally able to get an internet connection for our Mac and the ability to update our web page.

• Friday, July 15 th – Michael undergoes an abdominal ultrasound and an EMG (nerve conduction study). Test results from the abdominal ultrasound show some irregularities with Michael's spleen and an enlarged liver due to his dependence on TPN.

• Thursday, July 14th – Michael undergoes a surgical procedure to place a broviac with 3 lumens needed for the transplant. Scheduled admission is postponed to Friday due to the fact that no rooms are available.

• Tuesday, July 12th – We sign the transplant release documents giving permission to the hospital to perform a bone marrow (stem-cell) transplant on Michael.

• Monday, July 11th – We meet with Dr. Garvin who orients us as to what to expect with the transplant. Michael is also given a physical exam and undergoes a CAT scan to check for sinus and ear infections. His CAT scan evaluation is normal. Blood is also drawn for various tests. Lastly, we are given a tour of the oncology_transplant unit in the Children's hospital.

• Sunday, July 10th – We drive up to New York and move into the Ronald McDonald House. Parking in New York is unbelievably difficult and expensive. The drive up is especially long with unbelievably heavy traffic taking close to 7 hours.42nd Street in New York at 9:30 PM is amazingly crowded on a Sunday evening.

• Friday, July 8th – Final preparations are being made to head up to New York. Testing results thus far have been a go. We are planning on driving up on Sunday afternoon and will be staying at the Ronald McDonald house. Additional testing is set for early in the week with a planned admission on Thursday, July 14th. The week of the 17th will revolve around pre-treatment and BMT preparation. The actual transplant is planned for the 25th.

• Tuesday, July 5th – Ria Hawks forecasts admission to the Morgan Stanley Children's Hospital of New York Presbyterian to be July 13th or 14th. We are now planning on driving to New York on Sunday, July 10th. A number of outpatient tests including nerve conduction studies and a gastroenterological evaluation are planned for Monday and Tuesday. We are tentatively planning on staying at the Ronald McDonald House in New York City prior to admission.

• Monday, July 4th – An article about Michael appears in the Alburquerque Journal in New Mexico.

• Friday, July 1st – Michael undergoes a PFT – pulmonary function test – at Children's. The week of testing is finally over. We hope all goes well with the results that follow.

• Thursday, June 30th – Michael has a series of tests done at Children's Hospital including chest x-rays, a brain MRI, a creatinine clearance and blood work. Frozen urine and blood plasma is sent Fed ex to Dr. Hirano's laboratory in New York for thymidine and deoxyuridine evaluation. Michael also pays a visit to his dentist to check for any potential problems.

• Wednesday, June 29th – Pittsburgh Post-Gazette runs article about Michael entitled "Extremely rare, incurable disease destroying 21-year-old's nerves, intestines, stomach and muscles".

• Wednesday, June 29th – Audiogram to evaluate Michael's hearing is done at Children's. It is found that Michael does have some hearing loss due to the affect his neuropathy is having upon his auditory nerve.

• Tuesday, June 28th – Delawareonline.com runs post story about Michael in their News Journal.
Rare disorder leaves Md. man isolated.

• Monday, June 27th – Pre-BMT testing begins at Children's Hospital with a heart ECHO, EKG and blood work. Appointments are set for an MRI, x-rays, an audiogram and other tests later in the week.

• Wednesday, June 22nd – Good news from Ria Hawks, transplant coordinator, that an acceptable cord blood has been identified and reserved. The projected admission in New York will be July 10th. The actual transplant is expected to take place during the week of the 17th. All pre-BMT testing has now been given the go ahead. We are excited (and relieved) to see things moving forward.

• Wednesday, June 22nd – The Arab News in Saudi Arabia runs post article about Michael. We learn of this from an e-mail from a filipino working in Saudi Arabia who tells us that "God is on your side".

• Tuesday, June 21st – Reprint of the Washington Post article in The Winston Salem Journal in North Carolina: "Destruction: A once athletic young man now battles a rare genetic disorder that ravages nerves and organs".

The Times Record newspaper in Forth Smith Arkansas carries the Post article about Michael.

• Monday, June 20th – It was brought to my attention by an e-mail from someone living in Kuching Borneo (East-Malaysia), that the Washington Post story was reprinted in the local paper there – the Borneo Post. The well wishes from all of you who have read about Michael's story and who have either e-mailed or sent words of support are greatly appreciated.

• Pre-BMT testing moved to week of June 27th. We are still waiting for a confirmed admission date.

• Wednesday, June 15th – Dr. Kaufman removes Michael's NG tube at TPN clinic due to an improvement in his gastrointestinal motility (most probably due to steroids). Michael no longer requires supplemental suction to keep fluid buildup in his stomach under control.

• Stem Cell News.com posts reference to Post Article on their site. Site hosts breaking news and articles related to stem cell advances.

• Saturday, June 11th – AMSA (American Medical Student Association) posts a link to the Post Article about Michael on their site. http://www.amsa.org/news/

• Thursday, June 9th – Washington Post Article about Michael "From Limitless Options to One.pdf"
"Limitless Options" html (www.thewashingtonpost.com)

• Wednesday, June 1st – Michael attends his sister's graduation from BCC High school at Constitution Hall in Washington DC.

.• Wednesday, June 1st – E-mail from Ria Hawks, transplant coordinator, with the news that the estimated dates for pre-BMT testing will be the week of June 20th, and the estimated admission date during the week of June 27th. With the news about insurance, arrangements have now been put into motion to secure, test and acquire Michael's cord blood donor.

• Wednesday, June 1st – Gazette runs an article about the outpouring of support in the community for Michael and his transplant.
Gazette Article About Michael.pdf

• Tuesday, May 30th – The decision is made by Michael's dad to take a sabbatical leave during the academic 2005–06 academic year to stay home and take care of Michael after his transplant and hoped for recovery.

• Tuesday, May 30th – Empire BC/BS approval letter is received in the mail.
ApprovalLetterGarvinProtocol.pdf

• Wednesday, May 25th – The Gazette is given permission to run an article about Michael.

• Wednesday, May 25th – At nearly 5PM a call is received from the Empire BC/BS case worker that the external reviewer came back with a favorable review and that the decision was made to overturn the rejection and cover Michael's bone marrow transplant. To say that we were stunned by the news is an understatement.

• Wednesday, May 25th – Rejection Letter arrives in the mail from Empire BC/BS (at 11 AM).
InitialRejectionLetterGarvinProtocol.pdf

• NEA (National Education Association) posts notice about Michael's disorder on their website: News "Take Note" and on the NEA Higher Education Homepage

• Tuesday, May 24th – Michael is interviewed by Nancy Trejos, staff writer with the Washington Post, about his disease and all the problems we've encountered in our dispute with our insurance company.

• Monday, May 23rd – After a discussion between the medical director and Dr. Garvin, the decision is made to send the insurance request to an external reviewer. Various supporting documents are e-mailed to the Empire BC/BS case worker in support of Michael's review by the external reviewer. The case worker is also told at that time that the Washington Post will be running a story about Michael.

• Friday, May 20th – Decision is made to go to the media. The Washington Post is given the go ahead to run a story about Michael.

• Friday, May 20th – United States Congressman Chris Van Hollen's office is contacted and asked for help with respect to getting insurance coverage for Michael's Stem Cell transplant. A release is faxed to the congressman's chief of staff. LetterCongressmanVanHollen_52005.pdf

• Friday, May 20th – Leslie Richards, president of UDC's Faculty Association (NEA local affiliate), is contacted to see if she can do anything to publicize Michael's situation and our website to the National Education Association extended community. Leslie posts information about Michael on the UDC e-mail list-serve and contacts NEA.

• Friday, May 20th – Get word from Empire BC/BS case worker that the medical director intends to reject the new request for insurance under Dr. Garvin's metabolic protocol. (note: The previously denied insurance request and series of appeals were all undertaken under Dr. Hesdorffer's request for insurance.)

• Monday, May 16th – Contacted by Nancy Trejos, reporter for the Washington Post, about her interest in possibly writing a story about Michael and our problems with our insurance company. Word of our website reached her editor who thought Michael's story might be worth writing about.

• Wednesday, May 11th – Denise gets the word out about Michael's situation to the BCC baseball community and gets links to the site placed on the BCC, Westland and Westbrook list-serves. Donations begin to roll into the site through the Paypal link on the donation page.

• Wednesday, May 11th – Jeff Gardner e-mails Denise Gorham (Director of BCC Baseball) about Michael who happened to have played for BCC baseball and wonders if there is anything she might be able to do to publicize our website. Jeff has no idea that Michael's dad was once the coach of Denise's son and that Michael and Chris Gorham were old classmates at Bethesda Chevy Chase HS, Westbrook Elementary and Westland Middle school.

• Tuesday, May 10th – Send website link to friends to get feedback about our new website www.asecondchance.us

• Wednesday, April 20th – Contacted by a Swiss journalist who suggests that a website would be a good idea if they were to run a story about Michael in one of the Geneva newspapers. The journalist is a friend of one of Michael's aunts who lives in Switzerland. That e-mail was the motivation behind developing a website about Michael.

• Wednesday, April 13th – We meet with Dr. Garvin who gives Michael a physical examination. During our visit, Dr. Garvin discusses the transplant process, his feelings about the potential success of the procedure, and his intent to refile for insurance coverage under his board approved metabolic protocol. The issue of insurance is discussed as well as the possibility of exploring the option of medicaid. as another potential funding source.

• Saturday, April 9th – Jeff Gardner, Lord of the Rings tournament director, runs a charity event to raise funds for both Michael's transplant and for Shannon, the wife of Mike Carr, another player–tournament director, who had a stroke. The charity event drew over 40 players to the PSQ (premier series qualifier) level 2 event and generated close to $3,000 in donations. DeckTech announcement – News

• Thursday, April 7th – Dr. Hesdorffer transfers Michael from the Adult hospital to the Morgan Stanley Children's hospital. Dr. Garvin agrees to see Michael and to consider him as a candidate for a bmt under his metabolic protocol.

• Wednesday, March 30th – We receive a final letter from the Office of Personnel Management notifying us that our appeal for reconsideration of insurance under Dr. Hesdorffer's insurance request would be denied. The wording of the denial is as follows: "This is a final administrative review of this appeal. However, you have the right to litigate against the Office of Personnel Management in Federal court."

• Friday, March 11th – Our attorney, Richard Carter of Carter and Coleman, submits our legal package to the Office of Personnel Management in support of Michael's appeal for insurance coverage. Various documents including Dr. Hirano's medical justification, numerous research publications, as well as supporting case law are all included with that submission. A compassionate exception is also requested given the rarity of the disease and the age of the patient.

• Monday, February 14th – Denial of our insurance appeal by the Blue Cross Blue Shield FEP Directors Office. They state in the letter that "...according to the terms of your 2005 Blue Cross and Blue Shield Service Benefit Plan brochure, the treatment of MNGIE is not one of the conditions specified in the 2005 brochure for allergenic stem cell transplant. See pages 50, 51 and 55 of the brochure." The appeal is forward to the Office of Personnel Management for final review.

• Wednesday, January 26th – Scheduled admission to the Columbia University Medical Center for a stem cell bone marrow transplant. That admission was put on hold indefinitely given the refusal of BCBS to cover the costs of the procedure.

• Friday, January 21st – 2nd denial letter from Empire Blue Cross Blue Shield notifying us that the external reviewer has concurred with the Empire medical director decision to not authorize insurance coverage of Michael's stem cell transplant. The letter further informs us that the denial is being forwarded to the plan's FEP Director for further review.

• Wednesday, January 19th – Initial denial letter from Empire Blue Cross Blue Shield refusing to certify admission for Michael's stem cell transplant. They state that "The request for Sub-Myeloablative Allogeneic Cord Blood Peripheral Stem Cell Transplant is denied as experimental and/or investigational as there is no proof in the medial literature that ... a transplant would cure or halt the progress of this very rare disorder." The letter further states that ..."Please be aware that if you proceed with this service, all medical charges will be the member's responsibility."

• Tuesday, November 23, 2004 – E-mail from Dr. Hesdorffer, at the College of Physicians and Surgeons of Columbia University, informing us that he is willing to perform a stem-cell bone marrow transplant on Michael. Both Dr. Hesdorffer and Dr. Hirano have been working together to develop a protocol for BMT for MNGIE. Dr. Hesdorffer agrees to accept Michael on a compassionate basis even before his protocol has been completed due to the severity of Michael's condition.

At that time processes are put in motion to secure a cord blood stem-cell donor and to begin the process of pre-bmt testing. Admission to the Columbia Hospital of New York Presbyterian is scheduled for the 27th of January. Michael is currently hospitalized at the Children's National Medical Center in Washington DC as a result of severe gastrointestinal problems.

• Tuesday, November 23, 2004 – I e-mail Dr. Hesdorffer inquiring about the status of BMT for MNGIE., In my e-mail I write: "My son Michael has been diagnosed with MNGIE, and is one of Dr. Hirano's patients who is anxiously awaiting decisions with respect to bone marrow transplantation as a potential therapy for MNGIE patients. I know that you are writing a protocol for BMT along with Dr. Hirano. I am anxious to try and get a sense of how long you think it will be before such a protocol will be completed and approved so that BMT may begin? Obviously the longer the process takes, the more time the disease will have to progress in my son. ..."