Journal History
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Friday, April 22, 2011 12:34 AM CDT
Wishing everyone a Happy and Healthy Easter!
XOXOXOXO
Denise & Mike
Monday, April 4, 2011 7:33 PM CDT
Happy April!!!!!!
Mikey is just waiting on a surgery date ate Sloan Kettering so we really are almost there. His next appointment with the surgeons and team will be April 20th so they will tell us then what we can expect for him as far as time in the Hospital, Pain management and recovery and when. They are hoping early May. They have actually built his implants and jaw bone from a Cat Scan out in a lab in Colorado. It is truly amazing what they can do. He will be able to see the teeth on the 20th and then actually gets to pick the color white he wants and the shape of the teeth and then they will do that and the implant will go in!!!!! It is so exciting I think he is deciding what he will eat first with a whole mouth of teeth and being able to open his mouth to bite into something. It will all be very exciting for him!
We all have a new amazing Angel Shannon looking out for us. Shannon lost her battle on March 25th and leaves behind her amazing parents and little sister Morgan. Shannon will always have a piece of our hearts.
http://www.caringbridge.com/visit/teamshannon
Please hug your children and tell them how much you love them. Never take a minute for granted and savor each memory you have with them big or small they are all amazing.....
Thank you all for continuing to ask and check in on him you are so incredible. It truly has been a long journey for my little guy but we are really almost there!
XOXOXOXOXO
~Denise
Sunday, February 27, 2011 1:34 PM CST
I am asking for everyones thoughts and Prayers for another amazing woman who has lost her battle with cancer. I was lucky enough to meet Cheryl as she owns the Franklin Lakes Animal Hospital and she has taken care of Jeter since he was born in 2003. She fought like a warrior and this horrible illness took her in only 6 weeks from her diagnosis. She will forever be remembered for her grace and strength through this ordeal. I only hope that I am half the woman she is one day. The only word that comes to my mind is extraordinary and that does not come close. I feel blessed to have known her. I am praying for her children family and friends who are grieving this loss. It is truly so unfair and I will never understand any of this.
My heart goes to the Welch family and all who have supported her so amazingly through this. She will forever be remembered.
XOXOXOXOXO
Denise
http://www.caringbridge.org/visit/cherylwelch
Tuesday, January 4, 2011 10:24 PM CST
I want to wish everyone a Happy and Healthy 2011....so hard to believe another year is behind us and we are so excited about the New Year.
Mikey was officially discharged from therapy last Thursda 12/30 so now he is ready for his procedures to start.
We are just waiting for the primary surgeon to return from Maternity leave and we can get this ball rolling. he is very excited and nervous but all of this is so positive and really is the home stretch of all my little guy has endured. I will keep everyone posted when we get a surgery date. It is all exciting stuff happening.
Thank you again for always checking in on Mikey and for all your support it has meant so much to us. Remember to take nothing for granted and life is a gift that we have to be treasured as we all know this can change in an instant. Give your family extra hugs and make sure they know how loved they really are! Its 3 little words that need to be said.
Please say extra prayers for those who are in the midst of hardships in their lives anf for those still fighting their cancer battles every little prayer helps....
May all of you have a wonderful 2011 and may all your hopes and dreams come true.....
XOXOXOXOXO
Denise and Mike
Tuesday, November 16, 2010 11:34 AM CST
Happy Fall...... There are a lot of exciting things in Mikeys life happening with Post Cancer side effects that we are all so excited for him to start....
Mikey has what they call Trisimis with his mouth from the radiation to the jaw. The normal mouth can open 35 cm and due to the Radiaition Mikey was only able to open his 9cm. Not enought to bite into a sandwich. He has been working diligintly with the therapists at Sloan in NYC and is actully now at 17 which is where the oral surgeons needed him to do implants. He does not have many 2nd teeth from the tumor removal surgery as they needed to remove the roots to get the entire tumor out and the chemo also takes a toll so he is getting a whole new set of teeth. He is excited as he gets to pick the color and shape of his new teeth. The surgeons where able through a Cat Scan to send out the images to a lab in Colorado that rebuilds his mouth based on the images so his new teeth are ready to go in it was just getting the mouth opened to do that and we are there.... He is truly very excited as we all know 12 is an age where your appearance really matters and he is very self concious of his mouth. Especially when all his friends are getting braces and that is not an option for my little man... They are hoping they can pull the team together and have the surgery done first thing in the new year. The next surgery that we need to get ready for is working with the plastic surgeons on skin graphs for the scar removal on his face so they can have the plastic surgeon do that surgery the same day as the implants..... it is really the greatest news and hopefully the end of this long journey for my Mikey as has been such a trooper for so many years dealing with all of this I just want to see him happy... Thank you all for your support and prayers it means so much!!!!!!!
Hope everyone has a Happy and Healthy Thankgsgiving!
XOXOXOXOXO
Denise & Mike
Sunday, September 12, 2010 10:11 AM CDT
Mikey is 7 yrs in remission!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Friday, September 10, 2010 5:50 PM CDT
I want to share an amazing story about one of the thousands of heroes from Sept 11th 2001 as each person involved or effected is a Heroe.
Port Authority Police Office Bruce Reynolds lost his life that horrific day at the Trade Centers. He had an amazing partner for many years who was given a Saint Michael Medal blessed by Pope John Paul in memory of Bruce.
When Mikey was diagnosed this selfless Police Officer gave my Family the Medal for Mikey to wear through his Cancer Battle. It was truly amazing since it had such personal meaning to this remarkable Port Authority Police Officer.
Mikey was diagnosed in October of 2002 and completed 42 weeks Chemotherapy and radiation in Sept of 2003. On September 11th 2003 Mikey was given his end of treatment scans and that is the day he was declared Cancer free and in remission. This to us is a true "Pay it Forward" story and it will forever remind us of the Heroes of that day and the Miracle of Mikey they gave us!
Please say an extra prayer for all the families who lost loved ones that day and know each and every one of them is a guardian angel for one of us and in thought and spirit will always be alive. We truly know this from our Miracle! Tomorrow our baby with a 17 percent survival rate is 7 yrs in remission it is a bittersweet day for us but I believe in his Angels!!!!!!!!!
Thank you to the family of Bruce Reynolds for our Miracle I do believe he was watching over Mikey in some way!
XOXOXOXOXOXOXOXOXOXOXOXOXO
Friday, August 13, 2010 7:42 PM CDT
What a week..... Mikey had his 12th Birthday at Bobby Flay's Bar American in NYC..... I can not believe my little guy is 12 it is unthinkable.
His week ended pretty cruddy after a long therapy session yesterday at Sloan they measured his mouth opening and it is back to 9mm when he was at 15mm two weeks ago. It seems he has gone backwards. The normal mouth opens 35mm so we were hoping to get him to half of that for his surgery. He know has to delay it from the end of the summer until later in the fall and complete another few months of therapy. I guess in the big scheme it is fine but he is looking forward to his new beautiful smile!
Hope everyone is enjoying the last of summer and we will keep you posted!
XOXOXOXO
Denise & Mike
Monday, July 26, 2010 0:35 AM CDT
Hope everyone is having a happy and healthy summer so far. It is hard to believe we are coming down to our last week of July already. We are so excited about our Beach house and so excited that we are only 2 weeks away from Mikeys 12th Bday. He chose Bobby Flay's Bar Americain for his Birthday party so it is all booked for Sunday August 8th. It will be nice to come home from the Beach for his big Birthday celebration. It is so unthinkable that this little man is going to be 12. It is also so amazing that he will be 6 yrs in remission on Sept 11th.... we will have to think of something wonderful to do to celebrate. We are truly blessed and he is our miracle.
His therapy is on track and he should finish up around the week of August 12th so say a little extra prayer that all goes well and he can have his surgery end of August before school starts so this can be his year of "normalcy" not being out all the time and trucking over to the city so many times for appts and really enjoy being a 12 yr old boy. He is so amazing and never really complains but he is getting tired of it when he is missing out on summer fun with his friends.
The Beach is so much fun with our family and are amazing friends who have become family. It is our little piece of Heaven at the Jersey Shore. I am so grateful to my amazing husband who works so hard for us to be able to do all of these great things. You are the best and we truly are so grateful.
Say a prayer for all of the families that are still fighting their battle with this disease and for those who fought so strongly and are now our angels. Life is truly so precious do not take it for granted and give your child and extra hug just because.... remember things can change in a day we are proof of that.
Thank you all again for constantly checking in on Mikey and we love you all very much!
Enjoy the rest of your summer and we will keep you posted on his surgery
XOXOXOXOXOXO
Denise, Mike, Mikey, Olivia and Jeter Dog
Friday, June 25, 2010 4:51 PM CDT
Today is the last day of school and Mikey has finished his first year of Middle School. He is ready for summer and the beach just hanging around and relaxing.
He will continue with his weekly therapy at Sloan Kettering as he is doing so amazing with the opening of his mouth. He is actually eating giant sandwiches these days. He will have his surgery at the end of August and be ready for 7th grade in September with the best smile in the world.
Have a Happy and safe summer and Thank you for always checking in on my little guy! It is with the support of all of our friends and family that we have gotten this far!
XOXOXOXOXOX
Mike & Denise
Saturday, April 17, 2010 10:35 AM CDT
Please leve a message for Mikey as this makes his day. He is actually at 18,718 hits on his site!!!!
Mikey has so many exciting things happening for him at this point. He is working diligently with the Dental surgeons and the Occupational Therapists at Sloan 2Xs a week for the next 8 weeks so in July or August he can have his implant surgery. This will give him the opening to eat and the teeth to chew. A struggle that he has been dealing with for long years. The Drs said that his mouth at this point is fused shut and can only open 13 cm which should be almost 40 cm and an average child his age.
An amazing group of Drs. in Colorado has done a mold of his mouth and teeth with the help of a Cat Scan so that they could make his implants for the surgery. It is all so exciting for him. He will actually be able to eat a sandwich or a cupcake like his friends!
It is unthinkable that for 6 years the obstacles of just eating that this little boy has had with the chewing and swallowing being also so difficult and he really never complains about it.
For those of you who say that it is 6 yrs from treatment and they have never heard of post chemo and radiation effects that Michael has... to you I say educate yourself about such a thing before the words are spoken as this child is still dealing with all of this in post treatment side effects and it is extremely difficult to watch your child endure all of this. The post chemo and radiation effects Mikey will be life long and it is never over just another phase. He will be monitored for the rest of his life. The vision and the muscle damage are never going to come back but they can be dealt with so all that matters is he is here and a vibrant 11 year old. Always say extra prayers for the families still fighting this horrible disease and of course for the Angels that lost their fight. These children and their families are truly heroes!
Saturday, April 17, 2010 10:18 AM CDT
Mikey is doing great. We are working diligently with the Dental Surgeons and Occupational therapists at Sloan to get him ready for his implants which will make his life so much easier. He will be able to finally open his mouth and have perfect teeth to eat with. It has been a long road for this little guy but he is truly remarkable and just goes with it. He will have OT two times a week for the next 8 weeks which will bring us to July if you can believe it and then we can get ready for him to have the implants done.
They have already made a 3D mold of his mouth via Cat Scan and an amazing Dr. in Colorado has sculpted his new teeth perfectly for his jaw. Everything is back at Sloan in NY waiting for him to complete the process of opening his mouth so they can get in and put the teeth in. The Dr. said that he can only open his mouth at this point 13cm and a normal child his age has a 40 cm opening so you can see by the numbers how this has become a constant strugle for him. The amazing thing is that with all of the eating, chewing and swallowing struggles he has managed to get himself to 75 lbs which is huge for him.
Its amazing to me when people say they dont understand why 6 yrs later he is having all of these issues and it should just be over. Well to them I say that they should educate themselves on the Post chemo and radiation after effects that usually come 5 - 10 years out and that this is a constant struggle for all who have endured this kind of treatment. It is never over for them and you should watch your words and know what you are saying before they are spoken.
Thank you all for always checking in on him and please know that all your prayers and support are truly appreciated.
Please say extra prayers for all the children and families still fighting this battle and of course for all the angels that have lost their battle. They are all truly heros!
Sunday, December 25, 2009 9:16 AM CST
WE WISH YOU ALL A MERRY CHRISTMAS AND A HAPPY AND HEALTHY NEW YEAR!
Wednesday, September 23, 2009 8:37 PM CDT
Mikey celebrated his 11th Birthday in August and was 5 years in remission on September 11th. We are so blessed with our little man and the amazing person he has become.
He actually started 6th grade which is middle school for us and he is having the time of his life. It is hard to believe all that this child has been through and the well adjusted remarkable boy he is today.
He is starting the new process of post chemo and radiation treatment side effects this month at Sloan Kettering where a team of Drs are going to be reconstructing his teeth,and trying to figure out some solution to him not being able to open his mouth to eat comfortably. This consists of many scans, test, blood work, IVs and numerous trips to NYC but the outcome will be a perfect smile for my little guy so it is all worth it.
Please remember to say an extra prayer for all the families fighting this battle and for those families who have lost their battle. They are always in my heart and will forever be in my prayers.
Go in and hug your kids and remember not to stress over the little things as life is to precious and we unfortunately learned this through a year of trying to save our child. Cherish every moment with your family and friends and remember never ever take anyone or anything for granted!
Thank you to all our friends and family as without your support we would not be able to be where we are today! You are loved and so appreciated!
All our love,
Denise, Mike, Mikey and Olivia
Thursday, December 25, 2008 5:23 PM CST
I am asking for all of your extra thoughts and Prayers for an amazing family who lost their son Diego yesterday to this horrible disease. Diego Fuentes became and angel yesterday and his family is now broken hearted.
Please say an extra prayer for them today that they may find the strength to get through this.
www.caringbridge.org/visit/diegofuentes
While we are all celebrating please remember that there are children who are not as fortunate as ours.
All our love,
Denise, Mike, Mikey & Olvia
Tuesday, November 11, 2008 9:04 PM CST
Mikey is 5 years in remission now and this is when the Dr's consider you clinically cured!
He is truly an amazing little boy and I am so proud of him and everything he has battled in his short lifetime. I am so blessed to have him as my son.
I don't think that I ever thought that we would see this day when we started this battle on Halloween of 2002. I am still in awe of this little boys strength and courage when I think back on all he has been through. I am so proud of the little man he has become.
Happy Thanksgiving to Everyone and please keep all of the families who are still fighting this battle in your prayers and all of the families who have lost their children to this terrible disease.
Thank you for all of your support and we are so lucky to have all of you in our lives.
Denise, Mike, Mikey & Olivia
Wednesday, December 19, 2007 4:41 PM CST
Merry Christmas and Happy New Year!!!!!
Just a little note to wish everyone a Happy and Healthy Holiday Season and best wishes and Prayers that the New Year be wonderful! Mikey continues to exceed all of our dreams for him and we are looking forward to a healthy 2008 with friends and family around!
Love and Hugs,
The Diss Family
Monday, October 29, 2007 9:27 AM CDT
HAPPY HALLOWEEN!!!!!!!
This is going to be really quick and I will do a longer when in a few days....
Michael had his yearly checkup and they said that being this is 5 years from diagnosis and 4 years off treatment is is considered "CURED". He had scans (MRI & CT) on Saturday and that would be his last Oncology visit and scans. Going forward he will go back to the pediatrician all of the time and have a yearly Cat Scan just to keep tabs on the original site.....
You can not believe how amazing this news was and Mikey is so excited. It is so unbelievable to think that this was 5 years ago that all of this started...... Halloween will always be surgery day in my head but I am moving forward and counting every blessing as we have so many to be grateful for.....
Happy Halloween and thank you for still checking on Mikey it means the world to all of us that we have had such an overwhelming support system. It was what got us through all of this and we are forever grateful!
Monday, August 27, 2007 5:07 PM CDT
Another summer has come to an end........
Michael will be starting 4th grade next week and just had his 9th birthday on August 8th. We have been very busy celebrating. We started with a trip to historic Philadelphia to go to the Zoo and see the Liberty Bell, Betsy Ross house and all the great historic sites we could. It was 105 degrees and we could not have been hotter but we did everything the little birthday man wanted including a cheese steak.....
We also just returned from a wonderful family vacation at the Jersey Shore with all of our wonderful friends that we have made this trip with since Michael was only about 11 months old. It is the same time each year and Mikey says it is the best vacation each year because his best friend Nicky and Joey are with him the entire time. We are so blessed with an amazing group of friends and it is so nice to spend time with them at the shore each year......
It is so hard to believe the summer has come and gone already it seemed like I blinked and it was over....
I love the fall as everyone knows and am looking forward to Mike and I taking a trip to Lake George for our 10th Anniversary this September and then we will go back with the family for Halloween. This time of year as I always say is the best and yet has so many memories of Mikey's illness as it was October 2002 that he was diagnosed. It is also unbelievable that he will be 5 years from Diagnosis and 4 years off treatment. He is truly a walking miracle and we are again blessed with his health. He is doing amazing with only the little side effects that we have spoken of before like the cateracs and the dental issues but otherwise he is a healthy 9 year old who can test our patience like all others.
It is also so hard to believe that our Olivia will be two September 16th that also seems like we blinked and she is walking and talking. She has such an adoration for Mikey it is adorable. She actually calls him brother instead of Mikey but whatever works....... She thinks that he is the best thing in the world and that is all we could ask for. he loves her also but she gets under his skin as she in now into all of his things.
We are looking forward to all of the joys of fall. Applepicking, Lake George, Halloween and then of course Thanksgiving. Fires in the yard and enjoying our two miracles Mikey and Olivia.......
I hope everyone enjoys there last days of summer and remember to cherish those moments with your family as they are truly gifts. Hug your kids a little tighter and tell them that you love them one extra time and be grateful for each day you get to spend together as life is so precious and we all take it for granted so often.
Denise, Mike, Mikey. Olivia and Jeter~
Wednesday, July 4, 2007 3:57 AM CDT
Happy 4th of July!
I have been so bad with updating as it has been 4 months since my last post..... Michael is almost 5 years from diagnosis and 4 years off treatment which is truly amazing in itself. He is a vibrant active 8 year old with an amazing spirit. All who meet him tell us how they adore him and how he touches everyone around him. He is a kind and sensative boy.
Michael just finished 3rd grade and is ready for summer. To our luck his first week out of school he contracts some sort of staff infection on the left side of his face called Cellulitis and spent the last 7 days on the couch with sores and in such discomfort it was heartbreaking. If you can believe this the Dr. said that a staff infection grabs a trauma site and that is why it most likely happened on his face from the radiation he had there and that his lymphomics are not strong like a normal child. After 6 trips to the pediatrician and 2 antibiotics later he is looking and feeling like our Mikey again. Sometimes I feel like this little guy just can't get a break. If you could have seen his face when the Dr. told him that the next step would be admission to the Hospital for IV antibiotics you would have cried. He sat there in the Dr's office the next day with his little head to the side and his left eye shut as it had spread saying he was fine and it didn't hurt so they would not send us to the Hospital. The real bummer was that the sulfer based medicine means no sun for 10 days..... what a way to start an 8 year olds summer.... but he bounces back yet again with his strength and determination. He again proves to be our trooper..... nothing stops him and he ends up telling us it is ok! I am so proud of the boy we have all raised as he is remarkable!
We are going to a pool party for one of Mikey's friends Birthday today and it will be his first outing in almost 2 weeks. He is very excited and more excited that it will be cloudy and he can sit outside on his medicine. He really has made so many nice friends in school and they have wonderful parents as well so Mike and I have also made wonderful friends. We are blessed with wonderful family and support all around so these bumps are bearable.
We are in the midst of planning all of the trips that we would like to go on like Sesame Place, Land of Make Believe, Lake George and of course the Diss family vacation to the Jersey Shore as we do with Mikey's best buddy Nicky every August! There does not seem to be enough weekends in the summer to fit all the darn fun we had in mind so Lake George might have to wait until the fall again like last year. We went for Halloween weekend and Mikey had a great time as they have the Six flags decorated. I can not believe that Halloween is even part of the discussion yet. Time is going so fast and both Mikey and Olivia are getting so big. Mikey will be 9 in August and I can not believe that the little princess will alredy be 2 in September. It seems like yesterday that we were all anxiously awaiting her arrival.
It is 5:00 in the morning and I am updating as it seems this is my quiet time today.
Have a wonderful Holiday and an amazing summer and we will update the pictures soon.
All our love,
Denise, Mike, Mikey, Olivia and of course Jeter!
Sunday, March 11, 2007 7:57 PM CDT
Happy Saint Patrick's Day -
We are trying to update more but life is so crazy these days that we sometimes forget.
Mikey continues to amaze all of us with his incredible personality. He really is such a character that people enjoy him so much. He is busy with school and getting ready for the NJ state tests that they will be taking in a few weeks so he has been busy studying these days. We are very excited that the cold weather is breaking and we are that much closer to summer.
Olivia is growing so quickly it is hard to believe that she will be 1 1/2 this month. It seems like yesterday that she was born. She is Mikey's biggest fan. Her little face lights up like a Christmas Tree when she sees her amazing big brother. She really has started to get a little personality of her lately and she has quite a bit of "true girl" in her lately if you know what I mean.
March is not one of our favorite months as it is also so hard to believe that Mikey's Grandpa Jerry will be gone 9 years this month. It is one of those months that it couldn't be over quick enough. I think that Mikey and my Dad would have had an amazing relationship as Mikey has so much of his kindness.
Again, we want to thank everyone who continues to check on Mikey. We will keep updating and I promise I will change the pictures soon!
Hugs to all
Mike, Denice, Mikey, Olivia & Jeter
Saturday, February 10, 2007 6:35 AM CST
Happy February! I can not believe that we are already in February it seems like the months are just going so quickly. Mikey continues to do amazing. He is having some dental issues from the radiation to his head but we knew that this was coming and we have a great Dentist whom he adores at Sloan Kettering in NYC. He had a tooth pulled and will have another in a few weeks and she is trying to save the others as we do not know how many of his adult teeth he lost to the side effects of treatment. I tell him that he will have the best teeth when we are finished that everyone will want his smile.
He never stops amazing up as to what an incredible child he really is. He never complains about all the Dr appointments and is such a trooper. He truly is our Hero!
Olivia is already 17 months and a true handful. She is my Princess with no fear. Climbing, jumping, going down the basement stairs head first....... she is another joy in all of our lives. She is babbling but no real words, they will be coming shortly I think. She is another little miracle in our life that we are so grateful for.
We are looking forward to Winter Break from School in a few weeks to do something fun while Mikey is off and then before we know it Spring will be here and this COLD will be gone.
Thank you again for always checking in on Mikey ! I will try to post more frequently it just seems that time is going so fast and we are really trying to enjoy every day as it is truly our gift that we have been given with each of our children!!!!!
Happy Valentines Day!!!!!
Thursday, December 28, 2006 9:43 AM CST
I wanted to wish everyone a Happy, Healthy and Safe New Year!!!!!
The Holiday's have been very exciting with Mikey and Olivia but also exhausting. We did our Chistmas ritual to NYC and saw the Radio City Christmas show and then walked up and down 5th Avuene and saw the Big tree and then finished the day with a nice family dinner at Carmines. It is so special to me to do this with Mikey as it reminds me of when I was little and my Dad took me every year. I remember looking so forward to it and going to FAO Schwartz. Mikey loves it also but he would rather go to the Apple store to look at computers and IPODS outside the FAO Schwarts. Toys have really changed. He has an Ipod, downloads music and plays it on his laptop. Now he got a cell phone for Christmas (the one that only dials the 4 number programmed) so I am receiving calls hourly from him just to say Hello.
I can honestly say I am ready for a boring January.
Michael had a great Christmas and got almost everything he wanted from Santa so he is very happy. He continues to do so well Health wise and is such a truly amazing little boy. He is also such a great big brother! The weather has been so great that he is getting to enjoy his new bike during his time off from School. It is nice to be able to take them both out instead of them being trapped in the house. Olivia has become quite the little shopper with Mommy.
Olivia is amazed by the Holiday decorations and lights this year so it is so exciting for all of us to watch her really take it all in. She is slowly becoming a little person not a little baby anymore. She really did not know what to make of all the gifts to open but ripped the paper and loved it all. She walks her baby through the house in her carriage. She is so in love with Jeter the dog that it almost makes his craziness ok when I watch them together. She actually climbs in his bed to lie with him (gross but adaorable). It is also a treat for Jeter as whatever Olivia is eating she shares with him so he knows he will be well taken care of. One for Olivia one for Jeter.....
We took jeter with us on our Halloween Lake George trip and she was so excited to have him in the car she kept turing to him and pointing. The two of them have some friendship and he is so sweet with her.
It is hard to believe that it is New Years as this year has gone so quickly.Mikey is busy planning our vacations for 2007. He wants to ski and snowboard for the February break and of course we will do our yearly shore trip in August and then we will find some long weekend trips to fill the summer with fun.
I want to thank everyone for checking in on Mikey and for all of the love and support that we get from everyone throughout the year. We want all of you to know that we are so lucky to have each and everyone of you in our lives! I also want everyone to say extra prayers for the children and families who have lost the battle with this awful disease and for all who are still fighting that the outcome be as blessed as ours. So please, give your children an extra hug and say I love you more as they are such an amazing gift and we need to treasure every second with them and not take anything for granted.
We wish everyone the Happiest and Healthiest New Year and are looking forward to a great 2007!
Wednesday, September 27, 2006 7:24 PM CDT
October 25, 2006 - UPDATED......
Mikey had clear scans and we are actually moving to scans every year. It was 4 years ago October 18th that he was diagnosed and October 31st will be his surgery anniversary. He is doing so amazing and we are off to celebrate life in Lake George on Friday for a long Halloween weekend with family. He is such an amazing little boy and I am truly blessed to be his Mommy. We had our visit with the surgeon this week so he could look at the scans and he said that Michael truly is our "Miracle".
Please keep all of the families fighting this awful disease in your prayers and say a few extra prayers for those families that have lost their angels as they need our prayers so much! Hug your children and cherish every moment with them as we are proof that life can throw you a curve ball at any given moment! Every child is a miracle and every moment with them is one also.......I know before this I took so much for granted and now I understand how precious time with family really is.....
Have a great Halloween and we will check back soon!
It has been so long between updates and for that I am sorry. Michael continues to do so great and he amazes us more each day with the little man he has become......
September was quite a month for the Diss Family. Mikey started 3rd grade and seems to be doing well and really seems to be liking school which is great. September is also Mikey's 3rd Anniversary for being cancer free.......
September 14th was our 9th Wedding Anniversary and September 16th was our precious Olivia's 1st Birthday. It has been an exciting month and a very happy month in our home.
I will be updating the pitures of both of the kids so everyone can see how both Mikey and Olivia have grown. It is hard to believe that she is already 1 and well on her way to walking. It seems like yesterday that we had been trying so hard to have her and then she was here and now she is one. Time seems to be going so fast and we are trying to make the most of each moment with these two amazing children that we have been blessed with.
Mike and I spent our Anniversary celebration at Foxwoods in Conneticut seeing Nick Lachey (I bet you can guess who benefited from that). It was a great present and we had a great time together alone for the first time in a long time.
Mikey will be having scans this Saturday September 30th so please say a few extra prayers that he has clean scans again.
This is my favorite time of year and yet it always reminds me of Mikey's illness as it will be 4 years that he was diagnosed October 18th. It is a day that has forever changed our lives and will remain etched in our memories forever.
We are going to celebrate Halloween in Lake George this year going to Fright fest and enjoying our family!!!
Thank you for everyone that has checked in on Mikey and thank you for all the prayers to keep our little man well. It is with the help of all of you that we kept our strength and we are forever grateful for our family and friends......
I will let you know how Mikey's scans go and please keep him in your thoughts this weekend!
Tuesday, May 23, 2006 1:20 PM CDT
Where do I start......
Michael is doing amazing. He has had so much going on that I hope that I can cover it all. I have to make it a point to update more often. Michael made is First Communion in April and was so proud of all the hard work that he put into preparing for it. We are also so proud of him and the little man that he is becoming. He will be finishing 2nd grade next month and is doing great at school. I am teary eyed everytime the teacher writes a little note about what a kind caring special child he is. I think that he is who he is because of everything that he has been through.
He is playing baseball and enjoying life as a "normal" 7 year old boy. he has school trips, camp and all kinds of things going on as the school year raps up. It is so unbelievable that he will be 8 in August. It seems like yesterday this little man was born. He has grown into an unbelievable child and we could not be more proud of who he is. He is excited for summer to come and for the vacations that we have planned while he is off. One thing about Mikey is he has a true love of vacations....something he got from his Mother.
Micahel had his scans in March and all was clear so we can rest again until September. He will be three years off treatment in September and four years from diagnosis which seems like yesterday. We are very blessed for the health and happiness of our little monkey. He is truly a miracle and we are grateful everyday for him.
He is also such a wonderful proud big brother to little Olivia. She lights up like a christmas tree when she is around him. It is so wonderful to have the both of them and she is our 2nd little miracle. We are enjoying these two children.
I will update the pictures shortly so everyone can see how big both of them are getting. I am trying to enjoy all of this as time goes so fast and I treasure these two more then anything in the world.
I pray for all of the childre who are in treatment and say extra prayers for all the little angels that have earned their wings and the families as they are all in my thoughts and in my heart always......
Hug your children, treasure your family and tell them you love them every chance you get. Remember that children are a gift that is given to us and we need to make every moment a memory and never take anything for granted.
Have a Healthy and Happy Holiday Weekend!
Tuesday, October 11, 2005 7:03 PM CDT
It feels like it has been forever since I have updated and for that I am sorry. It has been very busy around the Diss house these days.
First, Mikey had scans on September 8th and they are clear and he will now go every six months since he was two years off treatment in September. It is so hard to believe that it has been three years since his diagnosis as it seems like only yesterday. The last three years have really been very difficult on our family but we have so much to be grateful for now.
I also want everyone to know that on September 16th 2005 at 4:00pm we welcomed our daughter Olivia Ann Diss into our life. She is also a miracle along with her brother as we tried so hard for the past three years to have a baby. She is just perfect and we are so blessed this year for all the great things that are going on. Olivia weighed 6lbs 14 oz and has blond hair and big blue eyes. She is a little version of her brother with lighter hair. She is another answer to all our prayers.
A very good friend gave us something for our home that says " Out of challenges grow miracles" I read that everyday and think how appropriate that is for our house. I can say that challenge is an understatement for the past three years but it has made us a stronger family and we have a new outlook on life these days.
All who know me so well know that this is my favorite time of year the fall. I love the weather getting colder, leaves changing, apple picking and pumpking picking and all the Holidays coming up so soon. The last few years all that this time of year reminded me of was Michael getting Cancer and all that came with that. This is the first year that I can say that I feel like I can breathe again and life is somewhat "normal" again. I feel like Olivia restored my faith after all that we have been through.
I ask all of you for prayers for all the families that have not been as lucky as us and have lost children to this disease. My heart truly breaks for each and every one of them and for all the families still fighting.
Hug your children and let them know how much you love them as life is so precious and we know that first hand. You must make each moment with them an amazing memory that you will have forever. It is so easy to get caught up in all the day to day craziness and take these simple things for granted.
I am adding a picture of Mikey with Olivia so you can see our "miracles".
Thank you for all your support and for standing by us through these difficult times as you are all so special and we are grateful for each of you in our lives.
Monday, June 6, 2005 2:55 PM CDT
I wanted to let everyone know that Michael had scans last week and all is still clear. We are so happy with his progress and can take a deep breath again until September.
We will enjoy the summer and look forward to swimming and relaxing know that school is winding down.
It is so hard to believe that he will be in 2nd grade in September. He has worked so hard in school and is ready for a well deserved vacation for everyone.
Please keep all the families in your prayers that are still in treatment and say extra prayers for those who have lost loved ones to this monster!
Friday, January 28, 2005 3:56 PM CST
I am sorry that it has been so long between updates but life has been hectic.
The most important thing to let everyone know is that Michael had scans on January 18th and there is no sign of disease. His sinus's will need some work but that we can handle. This was expected after the radiation to his head so it did not come as a suprise. I did not know that when they talk about long term side effects that they mean the further away from treatment you get the more likely you are to have them. I was hoping that we would be the people who did not have any, I guess that was wishful thinking. So we have another 16 weeks to breathe. Michael has been working hard each week with his occupational therapist on opening his mouth and has been making great progress but he still can not open it enough to eat properly. This is just another issue he will deal with and he really is such a trooper. You know that he finds a way to get the candy and cookies in. We will see what the outcome of this is and pray that he will not have to have his jaw reset to correct this.
Christmas and New Years left us tired and ready for a February vacation to decompress from the New Jersey Cold.
Thank you all for checking in and we will try to be better with the updates.
One more exciting piece of news is that Rhabdo bracelets will soon be available with all the money going to find a cure for this horrible disease. I will let everyone know how to get them when they are available.
Sunday, November 14, 2004 5:05 PM CST
I am sorry that it is always so long between entries. Life has been wonderful for all of us and I am so hesitant to even say that sometimes. Michael is exceeding all expectations that have been given to him. He is in first grade and doing amazing. He has been playing soccer and enjoying life as a 6 year old.
Of course there is always the "c" word after effects, dental surgeries, occupational therapy to open his mouth and check ups but we are so blessed to have our child that these are not worth the complaining.
Halloween is such a big deal to us because it was 2 years ago on Halloween that Michael had his treatment and we started our treatment journey. He partied like a child and enjoyed himself very much.
We are getting ready for the Holidays and they are the biggest deal in our house. We try to decorate more than the Griswalds in Christmas Vacation and Daddy has been coming close each year, I am sure that this is the year he will win.
Please keep all the families in treatment and without their children this year in your thoughts and prayers. My heart truly breaks for each and every one of them. We lost a tremendous little boy last week named Connor Hunley whose Mom and Dad could use all your extra prayers around now. Connor was such an amazing little boy who has touched so many in his ten years on earth his loss will be felt by many. (www3.caringbridge.org/tn/connorhunley)
Please remember to hug your children for they are miracles, never take them for granted and remember a million kisses & a million I love you's should consume your day.
Love,
Denice, Mike and Mikey
Sunday, September 19, 2004 8:04 PM CDT
It has been about six months since I have updated this page and for that I am sorry. So much has been happening in our lives. First and most important Michael had scans on September 16th and they are "beautiful" as the Dr. put it. He has been in remission for a year now and is making so much progress. He graduated kindergarten in June, played T-Ball on the town league and went to camp all summer. He is enjoying life to the fullest and we are doing it with him. Michael celebrated his 6th birthday in August and we took a family vacation to Busch Gardens in Virginia. It was wonderful, he made sure that he enjoyed every inch of Water Country and the amusement park. We all needed a rest when we got home.
He started First grade last week and is playing soccer in town. It is unimaginable that last year on his birthday he was so sickly. His hair has grown back amazing and he has had quite a few hair cuts this year. He is looking forward to cub scouts and loves school so we are very lucky that he has adjusted so well.
I will try to update more often and to change the pictures so everyone can see him grow and how great he really looks these days.
Please remember to say extra prayers for all the children and the families still in treatment, they could really use them right now.
Goodnight and thank you for always keeping Micahel in your thoughts and prayers. He really is our miracle..........
Remember a million hugs and a million I Love You's should fill each day and never be taken for granted.
Sunday, January 4, 2004 5:35 PM CST
Happy New Year!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I would like to wish everyone a Happy and Healthy New Year.
I can not say that I was sorry to see 2003 be gone. It was a year that we would rather put behind us. On to 2004 bigger and better.
The Holidays have been so great this year, and Michael is looking so wonderful, I still have to pinch myself sometimes. I am taking one day at a time and enjoying every second with my Hero. He really is the most amazing little boy. So are all the children and families we have come to love that are fighting this battle. Children really are so resiliant. I have made so many amazing friends on this journey, I only wish we had met under different circumstances. We have all come so far, some of us are still fighting and some are angels watching over us. For those that have lost this battle, my heart is forever broken for you. I think of you all so often.
If you look at Mikey today, going to school, playing with friends, at Birthday parties, swimming lessons, it is hard for some people to believe what last year was like for him, it was only a few months ago when he was on constant morphine and looking so fragile. His hair has grown back so nicely and feels like a fur coat, it is even a dark shade of blond. He really is looking like himself.
He is enjoying Kindergarten and all that 5 year old stuff to the fullest.
I want to thank everyone who has been a constant support system throught this nightmare for us. It is because of wonderful friends and family that we are able to deal with all of this. Your all do loved and appreciated, I only hope we tell you enough.
Other than that, we are back in the swing of life after treatment and loving every minute of it.
We know that this can change at any given moment and that is why we live each day to the fullest. A million hugs, a million smiles and a trillion I love You's! That is what we fill our days with these days.
Michael will have scans this Friday and I will let you all know how we make out. If you have any extra prayers, please send them Mikey's way this week, that all remains well and his scans are clear.
Hugs,
Denice
Wednesday, December 10, 2003 4:38 PM CST
I am writing today, not about Michael, but about an amazing woman I met on this journey named Dana. I have spoke of her before on this site and today she lost her battle with Rhabdomyosarcoma.
I was lucky enough months ago while Micahel was in treatment to have Dana find his site and be so supportive. She was never consumed with her own illness, but sending well wishes to others. She was telling me it was ok, and she was sick also. I feel honored to have met such an amazing lady,
Please keep Dana, her husband Steve and there two beautiful little girls in your prayers that they may find the strength to get through this time.
Dana is and will forever be a source of inspiration to me, I am lucky to have known her. You can read Dana's jorney and send her family support on www.caringbridge.org/nj/dana
Thursday, November 27, 2003 7:04 PM CST
HAPPY THANKSGIVING!!!!!!!!!!!
We have so much to be thankful for this year, it is so nice to see Michael with his hair growing back being a vibrant five year old. He is so excited about the upcoming Holidays. I have not updated in so long, but life has been busy. A good busy full of school and playing with friends, Thanksgiving parties at school and great things, instead of Dr's and Hospitals like last year. Michael had just completed his first overnight chemo when he came home for Thanksgiving last year, so this is an extra special Thanksgiving.
This year we are decorating for the best Christmas ever to see if we can light the house up like the Griswalds from the movie Christmas Vacation. The Holidays are so important to us this year. Last year at this time we did not know what the year ahead would bring, and here we are getting ready for the Holidays again. We are so blessed for Michael feeling so good, I feel like I have to pinch myself every now and then to believe that we have come this far.also with the Holidays here I miss my Dad more and more, I still can't believe that he is gone 5 years, it never seems to get easier and with all that has happened in the last year, I miss him more than ever. I know that he couldn't fix this one, but a big hug from him would make me feel better.
If you could see how Michael looks today it would bring such joy to your heart. His hair is crew cut length and it came in the lightest brown, borderline blond. He is growing those long batty eyelashes that he had and he really just looks good.
Michael will have his 12 week scans this Thursday December 4th at 8:00 am, please pray that he is still cancer free and that we will receive clear scans. I am ok in the weeks between scans but when we get so close I am so afraid.
I watch this little man sleep at night and tears hit my pillow just thinking about all he has been through. I feel so helpless that this is out of my control keeping him in remission. It is so unthinkable that this cancer can come back at any given moment. I will update about the scans when we have the results. Please say extra prayers, every one counts.
I have told you before about Dana, the remarkable woman fighting Rhabdo that needs extra prayers also, you can see her website at www.caringbridge.org/nj/dana to see her courageous fight against this disease, like I have said before, Dana is truly the meaning of the word amazing in my eyes and needs everyone to pray for her and her family.
There are so many families that we have grown to love with children and family members fighting this horrible disease, and so many that have lost there fights. I am thankful for each and every one of them that have shared there stories with me, that have helped me through this and that I am truly blessed to call them my friends. Like I have said before, I wish I had met each and everyone of you just not on a Rhabdo support site, on a beach in the Carribean just drinking a frozen Drink enjoying life instead of fighting for it.
I wish everybody a Wonderful Thanksgiving and a Happy and Healthy start to the Holiday Season.........
Friday, October 31, 2003 7:52 AM CST
HAPPY HALLOWEEN!!!!!
It was one year ago today that we waited 11 1/2 hours for Michael in Surgery. He had a trech tube and started his stay in Pediatric Intensive Care. It was just the beginning of his year long fight against Rhabdo. I never dreamed that today we would be waking up early so we would be ontime for his Kindergarten Halloween Party and Parade at School. There are so many things going on and at when you look at him in full swing it is hard to believe he has been through what he has. It was only four months ago that he was in so much pain that he was on constant morphine. He has really come so far, but still has so far to go...
I live in fear every day that he can relapse at any given moment. I think now that we are not at the Hospital everyday, I have more time to think about it. He will have an MRI every 12 weeks for 2 years, and then every 6 months for three more. If we can keep him healthy for 5 years he is in excellent shape. I look at him everyday and still can not believe that this is his life at only five. That little boy has been through more in one year than most will in a lifetime and still smiles everyday. Children never stop amazing me. I was always a nervous wreck no I am just that magnified. If anyone was to tell me before this ordeal that the next year would bring Michael having cancer and losing two pregnancies, I would have told you that i would never make it through something like that, But here I am looking foward to what this new year will bring. There have to be good things coming for us!
Last night he went to the most amazing Halloween Party at his friend from schools house. He said that it was the best Halloween yet. It was such a wonderful way for him to start celebrating the day he missed last year. There was a magician, they made balloon animals, the mom read a Halloween story and so much more. It was just the greatest and he enjoyed himself. It makes me so happy to see him like this. I feel that my "old Mikey" is really back.
Today we will have a big party at kindergarten and then the Parade when the kids parade around the outside of the school for family and friends. Then we are off to see his best friend Nicolas for some trick or treating. What would Halloween be without Nicolas? THat is what Mikey said so we will go to see him.
There are so many wonderful things going on for Mikey right now that life is a little busy again, but filled with good busy not Hospital busy, so it is a welcome change.
I will post some pictures of Halooween and his parade when I get them on the computer so you can all see how cute he looked as the Skinniest version of the Incredible Hulk ever seen.
He also wants to make a winter trip back to Marco Island he said that it was the best time of his life. It was so great to see him swimming and really enjoying himself a return trip will have to be talked about with Daddy.
Please keep all these children and there families in your prayers, they are all such fighters and the parents need every little prayer they can get. The sad part is that our story is not unique, there are so many that are going through this. Also there is the most amazing woman that needs extra prayers right now. Her name is Dana and she also has Rhabdo like Mikey. She is the wife of a wonderful man and the Mother of two of the most beautiful little girls you will ever see. Her story is at www.caringbridge.org/nj/dana if anyone has any time read this story and pray for her and her family that they will have the strength to get through this, they are having a rough time.
Also, he has a good friend Tommy from the UK that is also in remission and off treatment as of November, he is the cutest little guy, you can see his story at www.caringbridge.org/europe/tommylloyd
Please keep all these children and there families in your daily prayers, it is such a difficult experience and every little bit of support means the world.
I wish I could do something to help everyone I have met with Rhabdo, but all I can offer now is our love an support and hope that helps, I have made so many wonderful friends this year,I just wish it was not on a cancer support site and on a beach chair in the Carribean. Well, I have babbled enough this time so I will end with
THANK YOU for always taking the time to check in on Mikey and we Love you all very much!
Monday, October 20, 2003 10:05 PM CDT
It has been so long since I have updated that there is so much to tell.
Michael is looking and feeling wonderful. I will have to update his pictures because he has grown some hair, eybrows and eylashes. He is really starting to look like himself again.
We had a wonderful vacation in Marco Island and came back well rested and ready to conquer Kindergarten. On September 29th he started school... It was a great day for him, he was so excited with his new clothes and backpack and it was so emotional for me. I cried the entire time walking back to the car and home. I thought of this day so many times and never new if it was going to happen, but it has. He loves his teacher and loves school. He does his homework and is learning so much. I am forever grateful to his teacher who has gone above and beyond her call in making him feel comfortable. She visited us at home each week and did work with Michael until he was able to start school. She is truly remarkable and we are lucky.
October 18th was one year ago that our world spun out of control. I thought about that day a week before it came and everyday I relive last year. From October 18th - October 24th when they told us it was Rhabdo and did his tests (bone marrow biopsy, spinal tap, bonescan) until they scheduled his halloween surgery seemed like a blur. Now I think about it and I do not know how we found the strength to get through that. The 11 1/2 hour surgery, the weeks in pediatric intensive care, all of it. If I really had stopped to think about it at the time I would have had a nervous breakdown.
Then I think about where we are today. He is a vibrant five year old. He is feeling good and amazes me everyday with his courage. I know that this disease can come back at any given moment, but I refuse to think that way, I live for today and all the joy we have now, because this amazing little man has bought joy to so many lives and touched so many lives he will never know.
What else, anyone who will be home on Friday 10/24 Michael will have his picture shown on the Sharon Osbourne show. His chemo Angel Jocelyn will be on the show for Breast Cancer Awareness and she asked if it was ok to show his picture. So mabey he will be noticed and become a star!
Last but not least, Mikey got a baby lab and named him Jeter (after Derrick Jeter) . He is just the cutest little puuppy and making Mikey so happy. It is wonderful to see his face light up like the old Mikey. Life is getting back to normal, and God does normal feel good. Please keep Mikey in your thoughts and prayers because this battle is long and we have so much more to come..... he is such a strong little boy but he can use all the extra prayers you have.
Hugs to everyone and we will talk to you soon! I will get some new pictures of Mikey and Jeter up on the site as soon as I can.
Monday, September 15, 2003 5:20 PM CDT
After 327 of treatment our little warrior is officially in REMISSION!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Michael had his end of treatment scans on Thursday 9/11 and we received word from his Dr's that the scans were all clean and there is no sign of tumor or cancer. Those are words that we could only one day dream of hearing one year ago. When I think about the last year I do not know how any of us found the strength to make it, but one look in those big brown eyes and the fight was on. It is through the strength of this little boy that we all learned how to be strong. There was not one day that went by that this little man did not amaze us with his courage. He and all his friends who have fought and are fighting are truly heros.
It has been 327 days of total treatment - The breakdown goes something like this
15 days in Pediatric intensive care after 11/1/2 hours of surgery to remove the tumor.
14 admissions overnight for chemotherapy
9 overnight admissions for fevers and infections.
23 straight days of radiaiton with sedation
11 Cat scans
14MRI's
8 Chest x-rays
2 bone scans
15 blood transfusions/6 platlet transfusions
can not even count the blood tests, sometime every day
235 GCSF injections to raise his white count........
and everything inbetween that I would rather not remember.
We are off to Marco Island on Friday for Michael's Victory Tour. When we come back he will be starting kinergarten on September 29th. It is so amazing to see this child have the life of a "normal" five year old. I will post when we get back next week, but we will have 7 days in paradise to celebrate life.
Hugs,
Denice, Mike and Michael
Sunday, August 31, 2003 9:04 PM CDT
It was ten months ago today that Michael had his surgery to remove his tumor. That was the beginning of ten months of hell. Anybody who reads this story will know Michael's story, it is brutally honest, and not always the easiest to read, but when you are done your lives will be change forever. This courageous little boy has fought like hell to get to this point and still manages to have a smile for everyone he has met along the way.
Today it is getting cooler and you can start to feel fall in the air. That is what I remember about when Michael was diagnosed. Fall was always our favorite time of year. It was mid October and he went to preschool like every other day, both big Mike and I went to work like any other Thursday. I had no idea that our world in the next five days would come to an abrupt hault.
I am ashamed to say that it has taken this to educate us on cancer. Before Michael was diagnosed we were sometimes donating to the childrens Miracle Network or some charity and when it came to tumors or Rhabdomyosarcoma we knew nothing. We had heard of Lukemia and a few others but they were only something we saw on Lifetime,this was never suppose to be our lives or anybody that we knew.
If you would have asked me about childhood cancer a year ago I would have seen a picture in my head of bald children and the commercials for Saint Judes with Danny Thomas. You could never imaging that this could become your life.
I remember thinking I had to try on his holloween costume to make sure it fit, we had to start making goodie bags for his holloween party at preschool and we had to go pumpkin picking some time this weekend. It was in an instant that we would not be doing any of this, instead we would be in the pediatric intensive care unit have a crash course in Chemo, monitors, trech tubes and how to suction them, central lines, blood tests, blood counts,Iv's and transfusions to name a few. I remember trying to keep it straight it my head the difference between white counts and hemoglobin, what platets were and why he would need them.
The biggest thing was the fear, the God awful fear that grips you when you look at your child like this and realize you are up against a very fast, deadly cruel disease that doesn't care who you are, how old you are, how cute you are or how much your family loves you.
Thank you for letting us tell Michael's story to you and for sharing in this past ten months with us, please do us a favor, tonight when you are finished reading this and from now on when your day is done, Forget everything else, give your kids an extra tight hug before you send them to bed, and when you kiss them goodnight on their healthy heads, Thank God for that.
We are anxiously awaiting end of treatment scans that are scheduled for September 11, and with all the extra prayers recieve a clean report on Mikey's cancer. It is then that we can close this chapter of our Journey called Treatment and start our new journey called remission.
Hugs to everyone and we will keep you posted on the scans!
Remember there are so many brave and amazing families with these stories ours is not unique. Please keep them in your thoughts and prayers also, anything helps!
Thursday, August 21, 2003 9:53 PM CDT
Michael is home and is now done with his treatments. Today was such and emotional day for all of us. This is the day the we have thought about since October 18, 2002 and is still so unreal that we have made it. He has to have his final treatment scans in September and with extra prayers they will still be clean and he will be in remission.
I am so anxious about these scans, i am confident that they will be ok, but today I have so many mixed emotions. I thought it would be the greatest day and it is, except you almost feel safe while you are in treatment and have this huge medical support system around you. I know they will still be there for us, but we won't spend most of our days and nights with them.
The nurses and staff of six conklin at Hackensack Hospital have been amazing with Michael this year. We know that he can be quite the handful and they gave 150% in helping us get throught this year.
The child life team, the clowns, and volunteers who spend so much time bringing joy to this little boys life, I thank you for being such an important part of this treatment. It with the help of all of you that this year was possible.
Please keep Micahel in your prayers that he will remain in remission and that the days ahead will get brighter and easier for this little hero. He has endured in ten months what most of us will never in a lifetime. Today he said to me that this is a day he will never forget and I agree. Today God willing is the beginning of a new chapter in our lives. One that is filled with happiness, instead of suffering and tears. I am ready to put this treatment chapter behind us and start our new journey ......Remission... I just need to hear the Drs say that word after his scans and we will be on our way to starting over.
So for today we celebrate the first day off treatment, and with some prayers it will be the first of many more for this amazing little boy who has fought like hell to get here today. Michael has so much strength and courage and two parents could not be more proud of one little boy.
There are so many thank you's that need to be said, but how to you thank someone for saving your child life, there are no words that can express how you really fee. To all the people involved this year in Michaels treatment, we are forever grateful for all you have done.
It has been one hell of a ride, and I can say that I am looking forward to getting off, but with some hesitation I say Goodbye to all of you, you are all people that we will forever be grateful to and you will forever be etched in our lives as the people who helped to save our little boys life....THANK YOU is not the right phrase but it is the only one that I can think of now.
Thank you for helping our precious little boy, Thank You for getting us to this point of remission. Thank you for giving us a chance to spend more time with Michael. Without all of you this would not have been possible and we are forever grateful for everything you all have done for our family.
Monday, August 18, 2003 11:20 PM CDT
Michael's last chemo is finally here! Tomorrow we will go tho the Hospital first thing in the morning for blood work, and if all is well we will have the final chemo on Wednesday morning. If all is well we will be home by late Thursday afternoon and finished with week 42 and the Rhabdomyosarcoma Protocol. It is still so hard to believe that we have come this far.
I think about the last eleven months and most of it is in bits and pieces. It seems like only yesterday we were getting ready for the initial tumor removal. That day will forever be etched in my memory. Those eleven hours of surgery felt like forever. I still remember seeing that little face being wheeled to Intensive Care and not being able to hear his voice for days. It is still so unreal when I think back on all of it. Then after about day 10 in the pediatric Intensive care unit he bounced up and did some Karate for all of us... It is still something that the nurses and Drs talk about. The resiliant little boy who walked out of ICU and went home after 16 days. The Drs thought it would be a longer recovery, but Michael amazed them from the beginning.
I should have kept a daily journal because it has been a year of ups and downs (it seemed like more downs). The endless hospital stays for fever and low blood counts. The radiation was pure hell, and this little person just took it all on and fought like Hell. The strength of a child still amazes me to this day. Michael does not remember this as we do, he remembers Wendy the pretty nurse who gave him his sleepy medicine every day for 28 days. He remembers when Batman came to visit him in his Hospital room with Blues Clues and the colored. The playroom, the clowns and the wonderful Child life team who has been there to help get him throught this. I only hope that the memories stay like that and he never remembers what we will forever.
So keep the prayers coming that we will be able to finish this week and end the first part of our Journey called treatment and start on the next phase of our lives called "REMISSION". Those are only words that I have prayed and dreamed about that I can not wait to hear the Dr. say!
So starting on Thursday we will celebrate, a little every day and take little steps to starting over with this in the past, and looking forward to life returning to "NORMAL" whatever that may be.
I will tell write more on Thursday when we get home, and keep Michael in your prayers that he stays strong and this is really it!
Friday, August 8, 2003 10:40 PM CDT
Happy Birthday Michael!!!!!!
Today is Michaels 5th birthday, it is so hard to believe that my baby is already five years old. He has been celebrating for the past few days and is so excited to be "one hand old". He had a blood transfusion yesterday and a platlet transfusion today. He didn't even get his "Thursday fever" as usual so we actually got to have a party at home today. This has been an excellent week in the Diss household. It is the first time since January that he has felt good after chemo and not spent the second week in the hospital. He told our neighbor today that his best birthday gift was not getting a fever.
He will go back Monday for more blood work and mabey another transfusion to get his hemoglobin higher and then we do not have to go back to the oncologist until Tuesday August 19th to get ready for our last chemo. God willing it will be as smooth as this round and we will be finished.
It still seems so unreal that we have gotten this far. It seems like yesterday that we were sleeping on the floor of the intensive care unit waiting to hear that precious voice again with his trech in. I sat and cried the first time he said "Mommy" and I had not heard it in two weeks. It was so hard not to be able to talk with him. It is his voice that gets me through my days.
Michael is such an incredible little boy with such strength and determination, that is what has gotten him this far.
It will be such a blessing to hear the word "remission" in September after his end of treatment scans, they are words I have only heard in my dreams and have prayed for all year.
Please keep Micahel in your prayers because the second part of this battle is beginning. He needs to be clean for years to be considered cured, and we are going for the cure.
It has been throught the love and support of our family and friends that we have gotten this far in our battle. You should only know how much it has meant to us. I will keep you all updated on Michaels last treatment, but we will be out having big fun over the next two weeks while we are Dr. free. Enjoy what is left of the summer and remember cherish everyday with your children they are truly a gift and everyday should be a celebration of some kind, this can change in a heartbeat and we are living proof of that.
Friday, August 1, 2003 0:05 AM CDT
We are home from the Hospital, and this is officially our last three weeks of treatment. Michael had his overnight chemo and did quite well. He will go back to the Dr on Wednesday for a blood transfusion and Mabey some platlets. I am keeping my fingers crossed that he will not get his "Thursday" fever and be able to spend his 5th birthday at home. His Birthday is next friday August 8th and he is very excited to have a party. I told him that if we are in the Hospital we will have a party there.
It is so hard to believe that we have come this far, it seems like yesterday we heard that word "Cancer" and we were sitting in the OR waiting room for eleven hours waiting for Michael to come out of surgery and to hear how bad they really thought this was. October 22,2002 will forever be etched in our memory of the day we heard that our little boy had a malignant tumor in his cheek and jaw and that it was a rare cancer that needed aggressive treatment. I go over that day so many times in my head and it is still so unreal.
I sit in the Hospital with Michael and watch the chemo go in and can not believe what a remarkable child he is. His determination is incredible. He will somehow get out of his bed, with a bucket in one hand incase he feels sick and go to the playroom to make a craft. Nothing can hold him down he is truly incredible. He jumps out of bed the next day and looks for the Drs to ask if he can go home now? He reminds me to call his nurse so he cans start his shots and also makes sure he takes his other medications. All this and he is only 5 years old. He is an amazing insiration to so many people, he probablly will never know how many lives he has touched. I only hope that I have half of his strength and courage.
We are finally planning a family vacation for mid-september. Michael wants to swim, build sand castles and collect sea shells so we will spend some time in Florida on a well deserved vacation.
He will have his last chemo in August 20th and will have a round of end of treatment evaluation test during the week fo September 8th. They will give him another transfusion or two after the final round, more shots for his white count and we will be officially off treatment when we leave for Marco Island on September 19th. We will have to think of something amazing to do there to celebrate. He will also be starting Kindergarten in October when his counts recover more. We have so many things to look forward to and so many things to be thankful for.
Please keep Michael in your prayers that his remission remains and that we are going for the cure. Five years clean from Rhabdo and you are considered cured. All the prayers are appreciated more than any of you will every know.
Michael will have scans every eight weeks for the next two years and if all goes well they move to every six months for three more years and if you stay in remission for 5 years you are considered CURED, now that is one call I am looking forward to getting, I couldn't imagine anything better than that.
I hope everyone enjoys the rest of the summer and stay Healthy and safe..... we will keep everyone updated on the next couple of weeks.......
Sunday, July 20, 2003 12:21 AM CDT
It has been almost a month since I have updated and so much has happened. We had quite a scare with Michael last month. I had posted about Michael being in horrible pain and not being able to eat or dring and this had gotten to a point where we took him to the original surgeons who removed the tumor. They were able to get a look in his mouth and could see something in his throat, they needed to do an MRI immediately to see if this was regrowth of the tumor. I thought I would die that this was even being said to us. We are six weeks to the end of Michaels treatment and the thought of this little boy having to endure anyting else broke my heart. We had the MRI on Thursday July 3 and were told that since the Holiday was Friday we would not hear anything until Monday. That was hell itself. We found out on Saturday that it was not a tumor it was Necrosis caused by the radiation and the chemo. It is very painful and needs to be treated with antibiotics and mabey a surgery to graph the open area. It is still not a great diagnosis but it is better than a tumor.
His counts have been very low and he needs two transfusions and platlets between chemos. We just came home from the Hospital today after a four day stay for Nutropenia and a staff infection in his port. They will give him his weekly chemo this Thursday and the following week 7/30 he will have his overnight chemo. After that he has three weeks to regroup and his last chemo god willing (say extra prayers) will be August 2oth. The Drs said to expect to be hospitalized between rounds for low bloodcounts and complications but we are really coming to the end of this part of our nightmare.
After August 20th they are planning to do his end of treatment evaluation somewhere around September 7th. If all goes well they will give him and MRI, CT and bonescan every eight weeks for the next two years. If he is cancer free for two years they move the scans to every six months for three more years and if he remains cancer free for 5 years they consider a child with Rhabdomyosarcoma "CURED".
So we will be asking for prayers for the next five years that this amazing little boy is cured. He has put up such a fight this year and will truly always be my hero. We have met so many amazing families and there children through this journey that will forever be in our thoughts and prayers.
I will try to update over the next couple of weeks, but we have started our countdown......... who could believe five weeks could go so damn slow....
Hugs to everyone for all the love and support it means so much to us!
Saturday, June 28, 2003 2:50 PM CDT
Week 32 completed, which means nine more weeks to go. I think that the closer we get to the end, the harder this is getting. Michael had a platlet and a blood transfusion yesterday because his counts were so low, and he is in such pain. He can't eat or drink because he has such sever jaw pain from the chemo. He is trying so hard and is getting so frustrated. It is every parents worst fear that ther is nothing you can do to help your child. He is just having such a hard time it breaks our hearts.
Michael will also have his 34 week scans on July 17th, so any extra prayers that you have we would appreciate. We can only pray that his scans will still remain clear. I think scan week is another of the most frustrating weeks of our lives. You sit and wait for the call, and it is always at the latest possible time, Friday at 5. This whole ordeal has been so trying on all of us, but our little trooper is putting up one hell of a fight. We just have to keep him strong enought these last eight weeks to keep fighting the way he has been. He is back on every week chemo, which only means more side effects and less good days. I really believed in my mind that the closer we got to the end the easier this would be, God was I wrong. This is the roughest part yet. August 20th can not come soon enough.
Please keep Michael and all the children who are fighting this monster in your prayers, it is so difficult to see these children endure this treatment. We can only hope and pray for a cure!
Thursday, June 12, 2003 7:56 PM CDT
I am sorry that is has been almost a month since our last update, but Michael was having a little bit of a hard time. It seems that every Thursday after his big chemo he is admitted with a high fever and 0 white count. This week he decided to add double ear infections to the fever and no blood counts. He came home on Sunday and is feeling a little bit better. He is having such jaw and ear pain that he can't even sleep. They tried to give him morphine for the pain but it made his blood pressure go to low so they had to take hime off it. It is so difficult to watch him suffer and not be able to do anything for him. I am counting the days to the end of this treatment and we are down to nine more weeks, four big chemos whith the weekly inbetween. He is such and incredible little boy, and is my hero.
On a better note, he is very excited about going to kindergarten in September, it will almost be back to life as normal. He talks about that and going to Disney with his best friend Nicolas every day. Thank God for Nicolas, when Mikey gets to play with Nicolas he says that he forgets all the stuff that happens during the week. It gives him something to look forward to while he is in the Hospital. Like Mikey would say "everybody should have a best friend like Nicky". We will start planning his big Disney trip once treatment is officially over. We have so much to be grateful for and look forward to in the coming months, but what we really need is prayers for Michael that this monster will be gone forever and not show its ugly face again. We need to pray for the cure. Please keep him in your thoughts and prayers because it is how we have been able to get this far, and we are almost there.
Michael will have his big chemo next week 6/18 so I will keep everone updated on how he makes out this round. kep your fingers crossed that he has an easier time next week than he had last month. Hugs to everyone for the love and support and PRAY PRAY PRAY.
Sunday, May 18, 2003 6:42 PM CDT
I hope everybody had a good Weekend, I wanted to update everyone on Michaels week. It was week 25 of 42. He didn't have chemo this week, but was admitted to the Hospital Thursday with 102.7 fever. His hemoglobin was 5.5 which is tehe lowest he has ever been and his white count was 0.3. They gave him two blood transfusions and that took his hemoglobin to 11 and by Saturday his
white count was 1.0 and his fever was
gone so he was ok to go home. It is
getting so hard on him to recover after the big chemo, and he has something called "radiation recall" that when he is given one of the chemo drugs it brings back all the side effects of the radiation. I am so grateful that he is so strong and putting up such a fight. It has been so hard on him to go through this and we are so close to the end. They are expecting this to be his cycle for the next four big chemos so we can expect to spend some unexpected time in the HOspital.
Today is Sunday and he is feeling better, it is so nice to see him up and around and acting like a normal four year old. It is days like today that get me through the week. It is through the support and prayers of all of you that we are getting through most of this. So for today, we have another win for team Mikey, which brings us one week closer to our ultimate Victory, ending treatment with clean scans.
I will keep everyone updated on his week, and am hoping since we only have bood work and no chemo it will be uneventful. If the weather is nice it will mean trips to the park, playing with friends, and a Memorial day Barbecue. That to me is an amazing week and a well deserved break for this little man. Next week is his big chemo, so I
will ask again for all the extra prayers everyone has to get him through another round healthy.
Hugs to everyone for the love and support, and I will talk to you soon.
Friday, May 9, 2003 9:37 PM CDT
Michael had his 24 week scans yesterday and they were clear. There is nothing that can compare to hearing the oncologist say that the tumor is gone and the scans look beautiful. I feel like I can cry everytime I say that to someone. It is hell to wait these two days for the results, but so worth it. Atleast we know that this treatment is working and all his suffering is making him better.
Week 24 of 42, we are almost there....He had his big chemo Wednesday and came home from the Hospital yesterday after his scans. I am so relieved that he was not that bad this time and is almost himself today, a little sluggish but that is expected. He will have a blood on Thursday to give him a little turbo charge and does not have another chemo for three weeks. It will be so enjoyable to have these breaks for a little while. His little body will have more time to bounce back and mabey his counts will come up. Keep those prayers coming that he doesn't have to spend another week in the hospital this month with no blood counts. last round he did ok. not feeling the greatest but atleast he was home.
They also informed us that Michael could start kindergarten in September since he will end his treatment August 20th. He is so excited and I feel that his life will return to some sort of normalcy then.
It has been a long 7 months since Michaels diagnosis but to know that as of today he is almost done with treatment and tumor free makes this journey worth while. He has had so much love and support from everyone along the way it means more than anyone will ever know. It is through Team Mikey and the prayers and love everyone has shown that has made it possible for us to get this far, please stick around for the next 3 months so we can all celebrate Michaels Victory in August together. He is only four years old and has touched so many lives he has no idea. He is truly a remarkable little man and my Hero.
Sunday, April 20, 2003 10:03 PM CDT
HAPPY EASTER!!!!!!
Michael had a wonderful Easter and it was a pleasure for everyone to watch him have so much fun. He had his big overnight chemo on Wednesday 4/16 and came home the next day. They gave him some medicine so he wasn't to sick this time. He has been seeing his friends, going to the park, and doing things a "normal" four year old would, It makes us so happy to see himself enjoying this time.
He will have scans tomorrow to see how he is healing from the radiation, and will have his weekly chemo on Tuesday. Keep your fingers crossed that by weeks end his blood counts do not hit zero again and he has to be hospitalized. He has been feeling so good and having fun with his friends it would break my heart to see him the way he was last month.
We expect his blood counts to go down 10 - 14 days after the big chemo, but are hoping that it will only be a blood transfusion that will make him feel better and not 6 or 7 days in the hospital. Please keep praying for Michael that this will get easier on him, he has had such a hard few months and needs a break.
I will keep everyone updated on our week, and if we do not have a chance next Wednesday April 30th, Mikey needs extra prayers. He is having his 21 week scans to make sure that the chemo and radiaiton is working and that this beast is gone. We need to hear that everything that he has been through as been for a reason. So for today we are one more day closer to Michael being the Healthy little boy we all know and love.
Hugs to everyone and we will let you know how his week goes.
Wednesday, April 9, 2003 8:35 AM CDT
It's been a couple of weeks since I have updated everyone, but Michael was having a tought time.
He completed his radiation treatments on Monday March 31st, and celebrated with a little party. He was very excited that he did not have to get up everyday to go the Hospital. We could get back to life as "normal" being just chemo. Isn't it amazing that we were so excited to "just have chemo".
His left side of his face is inflamed from the radiation, and his ear is causing the most pain. On top of that pain he has jaw pain from the Vincristine he receives weekly. He was in terrible pain by last Thursday April 3, and could no longer eat or drink because he developed mouth sores again from the radiation and chemo combination. By 9:00 that night he was admitted to hackensack Hospital with 101.7 fever and in so much discomfort it was not even fair. They put him on morphine for the pain and through a series of tests discovered that he has a staff infection in his port (the central line installed to give him chemo and meds through). His blood counts were so low again, his white count was 0.1, and he needed a blood transfusion for the hemoglobin. He has shots that are bringing the white count up, but they are taking longer each month because his bone marrow is getting weaker after each chemo treatment.
It is amazing what this little boy has been through in the last 6 months. He has spent 81 days in the hospital, 15 days in the Pediatric Intensive Care Unit with a trech tube to breath, the rest were stays for chemo and side effects from chemo.23 radiaiton treatments, 8 blood transfusions, 1 platlet transfusions, 77 blood tests and over 100 gcsf shots to bring his white blood count up. He has had 7 Catscans and 4 MRIS, bone marrow biopsy, spinal taps,bone scans and countless other tests. All of this and this amazing little boy still tells me that he had a great day most nights before we go to bed. He is truly a hero.
The good news is that from here on he "only has chemo" and with all things going smooth he should complete his last two day chemo on August 26th. He will continue his every week chemo till then and have the big one every three weeks. So keep praying that everything stays on course and he can finish this on time.
April 30th he will have his next set of scans to make sure that there is no regrowth of the tumor and to see if the radiation and the chemo are doing there jobs. Please send extra prayers our way that this monster is gone, and that all Michael is going through was for a reason.
So for today we do not have to go back to the Hospital for 1 entire week, and we will stay over for the big chemo next week. One week without being poked and prodded is so huge to him. We will just enjoy this time together and do things most 4 year olds are doing. I will let you know hoe next week goes, keep your fingers crossed and keep praying.
Friday, March 21, 2003 8:29 PM CST
I am sorry that we have not been keeping up on our journal, but the last two weeks have been tough on Michael.
His mouth started hurting him the second week of radiation, about March 11th he could not even open his mouth or really talk. He was in horrible pain, and it just seemed that he was not feeling well.
Thursday March 13th he had his daily radiation, and when his blood counts came back they said he needed a blood transfusion. His hemoglobin count was very low, and he was in terrible pain from his mouth. While they were giving him his transfusion they also started him on Morphine for the pain. He came home that afternoon,but didn't seem like himself. It was while he was in bed late Thursday night that I noticed him shivering. He had 102 fever and WAS admitted to the Oncology unit at Hackensack Hospital late that night. It was 1:00 in the morning when they came in and said that his platlet count was critical and they were going to give him a platlet transfusion. This was done during the night, and he resumed in the morning with his radiation. His fever continued and he developed sores in his mouth so he could not eat. The weekend was terrible for him, and he remained on morphine for the pain. Monday came and the first blood transfusion from the previous Thursday had not done its job, his counts were low again which meant no radiation and he needed to be transfused again. The doctors ran cultures but could not find an infection to be causing his fever so they call it nuetropnia. This is when the White blood count is at 0 and the body can not fight off infection and you have no immune system. They started him on 2 antibiotics in his IV when he came in so this would fight off anything that was brewing. By Monday he was not eating at all, and the sores had him in such discomfort that they had to give him Atavan to calm him down. This was such a change from the last 17 weeks, he had never been this sick since this all started, and for the first time in 6 months I looked at him and he looked bad. It broke my heart to see him like this and know that I could do nothing to help him. The doctors kept him comfortable on Morphine, and started him on antibiotics and mouth care for the sores in his mouth. By Wednesday they had the pain controlled and his sores were feeling better. He started to eat pudding and they let him come home. He came home on 7 medications, but was just so happy to be in his own bed.
Today is Friday March 21st and he completed his 17th of 23 radiaition treatments. He has six more to go because we skipped while he was in the hospital. He seems much better than when he came in last week, but still has alot of pain in his mouth. He will have is bloodwork done again on Monday 3/24, so keep your fingers crossed and say an extra prayer that Michael will have an easier week than the last two. He will sleep over this Wednesday 3/26 for his big chemo, so lets hope he keeps his strenght up.
I am so relieved that he is feeling better and am looking at this as a bump in the raod. Thank God he is a tough little boy who is putting up one hell of a fight. He and all the other children are my new heroes.
Oh! One more thing, Michael had a great ending to his Hospital stay, he got to see the face of an Angel. One of his chemo Angels named Jocelyn who has been sending him cards and gifts came over when he got home Wednesday to meet our family. We are very blessed to have her in our lives, and are lucky to call he our friend. To all the chemo Angels who have sent love and support to Michael, you are all amazing human beings who have made a little boys dreary days much brighter. Hugs and Kisses to you all, you have no idea what your support has meant to our family.
I will keep everyone posted next week on his progress, and again, thank you to everyone who is on team Michael, it is from all of you that big Mike and I get our strength.
XXXXXXXXOOOOOOOOOXXXXXXOOOOOOOOXXXXXXXOOOOOOOXXXXXXOOOOOXXXX
Have a great Weekend, and by this time next week with God on our side we will be 1 day from the end of radiation!!!!!!!
Saturday, March 1, 2003 6:57 PM CST
3 down 20 to go!!!!!!! Michael completed his first three rounds of radiation. These first three seemed to go smooth. I can only hope that the next four weeks stay the same. He will have radiation Monday-Friday for the next four weeks, with Sat & Sunday off. This will end about March 28th if we can keep his blood counts up and go on schedule. Lets all keep our fingers crossed.
Michael will have his 7th of 12 big chemos this week. When he has the big treatments he sleeps at the Hospital. We try to make it as fun as possible. He doesn't mind so much sleeping over because he has made many friends, and looks forward to the clowns, the crafts, and all the entertainment provided by Hackensack Hospital. He even gets toys to bring home. They make it so fun, sometimes he doesn't want to leave. I only hope he does not get as sick as last time. He was sick from Wednesday to Saturday and had a rough time.
Sometimes we can not believe that it has been almost 5 months since his diagnosis, he has been so brave through all of this, and still remains a happy active four year old. I swear sometimes if he had his hair, you would forget how sick he really is. We are so grateful for his spunk, it keeps us going.
I will keep everyone updated on next week with the big chemo and the radiation. He will most likely have another transfusion after this treatment, it seems he can go about 7-10 days and his counts drop. We will talk to every soon, and thank you so much for the love and support.
Saturday, February 22, 2003 5:31 PM CST
Michael just completed all his radiation simulations and had his tatoos put on his left cheek. They will do his final fitting of his mask and start his radiation this Wednesday February 26th, from there he will have 23 treatments, they will be everyday except Saturday and Sunday. This will take about five weeks to complete. The Radiation Oncologist Dr. and his nurse are wonderful.
Michael had his second transfusion this week 2/18 and his blood counts are still very low even with the GCSF shots. His white count is 0.3 which means he is not able to fight off infections. His platlets are also very low. We will go to the hospital on Monday to have them rechecked, keep your fingers crossed that they are coming up. It seems like we have been at this much longer than 12 weeks, but the good news is that he will not have his weekly chemotherapy for the next six weeks only his every three week overnight chemo. Mabey his little body will have a few days to regroup. I will keep everyone updated on the radiation and thank everyone for all the love an support. It means so much to our family at this time.
Friday, February 14, 2003 6:33 PM CST
HAPPY VALENTINES DAY!!!!!!
We just returned home last night from Michaels 5th big chemo. Michael enjoyed handing out his Valentines to all the Nurses and Doctors he has grown to love. Who could believe we are almost half way through these overnight stays (5 down 6 to go).He will have these until July and will continue his weekly treatments for 30 more weeks,this brings him to about Oct. He is almost ready to start his radiation. They did his Cat Scan for his headmold and will have the final fitting on Wednesday February 19th, he will start either late next week or the week or 2/24. He is still having low bloodcounts and will have his next transfusion on Tuesday to get his counts higher for the radiation. He will have 23 days of radiation over a 5 week period, with Friday and Saturday off. This will be in combination with his weekly chemotherapy. I only hope he fights his way through this the same way he has the last 12 weeks. He is a very brave little boy and is a true Hero in our eyes. All the children figting are heroes. Please keep your prayers going for Michael and we appreciate everyones love and support. I am still trying to get the pictures on here but am not having any luck. I will update everyone next week!!!
Friday, February 14, 2003 6:33 PM CST
We just returned home last night from Michaels 5th big chemo. Who could believe we are almost half way through these overnight stays. He will have these until July and will continue his weekly treatments for 30 more weeks, about Oct. He is almost ready to start his radiation. They did his Cat Scan for his headmold and will have the final fitting on Wednesday February 19th, he will start either late next week or the week or 2/24. He is still having low bloodcounts and will have his next transfusion on Tuesday to get his counts higher for the radiation. He will have 23 days of radiation over a 5 week period, with Friday and Saturday off. This will be in combination with his weekly chemotherapy. I only hope he fights his way through this the same way he has the last 12 weeks. He is a very brave little boy and is a true Hero in our eyes. All the children figting are heroes. Please keep your prayers going for Michael and we appreciate everyones love and support. I am still trying to get the pictures on here but am not having any luck. I will update everyone next week!!!
Friday, January 31, 2003 at 10:30 PM (CST)
We are at week 12 already and Michael had his MRI, Cat scans and all the other 12 week tests yesterday. These tests are to see if the tumor is gone or regrowing, if it has spread to his lungs, and to get him ready for his radiation. Today was the longest day waiting for the results, but it was worth it to hear that everything looks great and we are in good shape. We celebrated with a big icecream cake for dinner. I am grateful in so many ways that he is progressing so well, but still have a hard time believing this is still happening to my baby. It has been three months since his diagnosis, and it feels like 3 years. He has been through so much in such a short time I do not know how he is still his energetic happy little self.
Michael had blood counts of zero this week and had his first blood transfusion. I think that it did him wonders and today he was bouncing off the walls. He is really an amazing little boy and is so brave to endure all of this. He will be starting his radiation on Febuary 10, and that will be everyday Monday-Friday for 23 days. They say that whatever cancer cells are left should be gone after that. We are at week 12 for his chemo with 30 more to go. It seems like we have really come so far. This precious little boy is only concerned if he is going to Wildwood Crest this summer, and never asks when this is going to be done. I will keep everyone posted on the radiation and how things progress in the next couple of weeks and will try to get the pictures on......that is the hard part. Again thanks to everyone for the love and support..... it got us through another week. This week was huge hearing that his scans were great and the treatments are doing there thing. We have to remember that this is all to get our Michael back to his healthy self, 12 down 30 to go.
Friday, January 24, 2003 at 10:46 PM (CST)
We are back from our week 9 treatment and so far all is well. Micahel was pretty sick this time, i guess that the chemo is catching up with him. Again he proves what a remarkable child he is by being so brave. He had a great time with his friend Tyler who he always shares a room with. The great news this week was his friend Tyler is done with these treatments but he will be missed as a roomate. Michael will be having a transfusion on Wednesday to bring his bloodcounts up, and his 12 week scans on Thursday 1/30 to check for any regrowth or if it has spread to his lungs... Please keep the prayers coming, we need some good news..... hopefully all is good and he will start his radiaition in the next few weeks. We have met so many wonderful familys over the last three months, I only wish we had all met under different circumstances. I am looking forward to when we can have the children play outside the Hospital and this is all behind us. I will keep you posted on how his transfusion goes and the outcome of the scans next week. As for today, Michael is feeling a little better after this weeks big treatment, and we are almost 1/4 through this. He has really come so far, and like I always say we are one more day closer to having our Healthy little boy back. Thanks again for all the love and support and keep your fingers crossed for good news this week. Did i forget to mention the nurses on six conklin at Hackensack Hospital who make our overnight stays great. You are all truly remarkable and this would not be possible without you. A big hug for all of you from Mikey.
Friday, January 10, 2003 at 07:46 PM (CST)
Well another week done. Michael just completed his eighth week of treatment and is doing pretty good. His blood counts are low and they will most likely do a transfusion next week. Anything it takes to make him feel better. He is still very active and seems to be in pretty good spirits with everything that is going on. I guess we should look at it like 8 down 34 more to go. May they continue to go as they have been. Michael will be getting ready for his radiation treatment in February. He will have a CAT Scan in another week to see how the area where the tumor was looks, and to see how it is responding to the chemo. The doctors don't think that that they will see anything because they didn't see anything on a CAT Scan November 7. Keep your fingers crossed. I will keep everyone updated on his Monday visit for blood work to let you know if he gets a transfusion and how he is, but again thank you for all the love and support for Michael, it means so much to us...
Friday, January 03, 2003 at 07:39 PM (CST)
Were back, three down 9 more inpatient visits to go. I guess that is a better way of looking at it. This visit went very well, a little upset stomach, but nothing to really complain about in the big scheme of things,again Michael showed how brave he is. The clowns came to visit and the nurses on six Conklin make these stays easier to deal with.
He will have his next two treatments inpatient. He is taking these multidrug treatments ok except for his blood counts are low, hopefully we will get them back up by starting his injections again tonight. This should add some excitement to bedtime. Again he shows his strength by taking them like a little champ. He is a much stronger person than his mother, because I would still be crying about the surgery, it is not even a second thought in his little head. He is still the same vibrant little boy we all know and love. Mabey we can all do alittle extra praying that these shots will work and he will not need a transfusion. Before we all know it, it will be Christmas next year, and we can put this nightmare behind us. It is all possible to get through with so many good friends and a wonderful family. We will keep you all updated as the treatments go on. As for today, things are good, and we could not ask for more at this point. Things are progressing and that means we are one more day closer to having Michael Healthy, who could ask for more than that.
Wednesday, January 01, 2003 at 01:56 PM (CST)
Happy New Year, we are praying that this year will bring Health and Happiness to all. Michael enjoyed his holidays more than ever this year, even though he has had a tough couple of months. He will have a nurse come hydrate him today at home so when he gets admitted for his chemo tomorrow he will be ready. One time he was not hydrated enough it turned his two day stay into three while they did it there. It is much easier this way and he can spend more time in his own home. He is truly amazing he does not complain about being hooked up to IV at home, or about going to the Hospital for the treatments. His bloodcounts are very low at this point and we can only pray that they will go back up and he will not need a transfusion. I will keep you all updated when we get home from this stay, hopefully Friday 1/4 (keep your fingers crossed). I am going to try to get some kind of blood drive together if anyone has any ideas? I will post some pictures when I have the Holiday rolls developed, he is looking quite handsome these days without his hair. It is starting to grow on us. Talk to you soon! Happy New Year
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