Save Giovanni's Friends With DKMS Americas: Where leukemia meets its match!

September 30, 2007

Saving Giovanni +195

Giovanni Begins Drinking Again

 

Giovanni had his first bottle today in over five weeks. Once the steroid reductions began he stopped talking, no more Da Da or vocals and he stopped drinking and eating solid food. He has since begun to vocalize some, eat some, and now he's drinking from a bottle again. Not much, but he's showing an interest, grabbing for the bottle and drinking.

 

We all went to the Deerfield Fair today and had a great time. Many many people recognized Giovanni and stopped to say hi, wish us well, and thank us for the good work we are doing with the bone marrow drives. Giovanni had a great day and was all smiles. We are moving on to another month and close this one on a good note. Thank you everyone for your continuing support and please help us organize more bone amrrow drives. Its a very simple process. Please write me at mguglielmo@helpgiovanniguglielmo.org to organize a Save Giuovanni's Friends Bone Marrow Drive and save some lives.

 

 

September 29, 2007

Saving Giovanni +194

 

Giovanni slept well last night and Elene enjoyed visiting with him. She loves Giovanni beyond words and with her as Giovanni's Godmother will tie the old country to the new. She is also responsible for teaching Giovanni Italian. Giovanni even let her hold him for five minutes before screaming. As you are all aware, few people can hold him besides Christina and myself and he even picks Mom over me when its just the two of us.

 

Giovanni appeared at the Sparkel Clean Car Wash to meet some new donors and friends while we added another 60 people to the registry. Giovanni has inspired 9,822 life-saving donors to join the registry.

 

Alex also helped with the drive and was on the street with Aunt Elene waiving donors into the drive and holding a sign of his baby brother Giovanni. We will be posting drive pictures shortly.

 

September 28, 2007

Saving Giovanni +193

 

Giovanni had a great exam at Dana Farber. The doctors said he's doing great. His body continues to make its own red blood cells, we're waiting on his IGG level for a possible transfusion--but note he's only had two such transfusions in six months. His cyclosporine medication was reduced for a third time and will continue to decrease until the dose is completely removed or Giovanni's body adversely reacts to the reduction. The purpose for the immuno suppresant cyclosporine is to combat any graft versus host disease.

 

Giovanni's central line is being scheduled for removal, and we did not get to see the GI doctor. We are rescheduling with the GI doctor with hopes that Giovanni's G-tube can be replaced with a button. Also, we are now scheduled to come in every three weeks instead of two and while Giovanni's weight remainded stable at 14.6 lbs he did grow again.

 

Giovanni's Godmother Elena came to the hospital to visit Giovanni and returned home with Christina to spend the night and Saturday with us until departing to a friend's wedding.

 

September 27, 2007

Saving Giovanni +192

 

Giovanni slept well during the night and in the morning I took him into our bed where he slept another 1 1/2. Tomorrow Giovanni has a big day at Dana Farber.

 

September 26, 2007

Saving Giovanni +191

 

All is well. No problems today. Giovanni is doing great. Another month is drawing to a close. I'm reading a lot about the other children who have NEMO and many of them are having GI issues. They all had a bone marrow transplants and were told the transplant would not address the GI issues even though about 30 percent of the immune system is in the GI tract. Giovanni, however, is the first NEMO baby to get a cord blood transplant and in his case the villi in the GI system were blunted and would not stand. Also, the defective A cells Giovanni had would not stick to the villi to help them stand and aid them in their work. That is one of the reasons Giovanni had chronic bowel movements, vomiting, infections, and failure to thrive.

 

I can remember stating to the doctors: "Well if Giovanni gets new A cells that work wont they help the villi stand?" and they replied "its possible but not probable." But Giovanni was the first NEMO baby to get a cord blood transplant so they could not state with any substantiation what could happen. A subsequent endoscopy months after the transplant showed that Giovanni's villie were standing and no longer blunted. We are hoping that he will not have the GI complication of the other NEMO kids and that cord blood is the reasoon.   

 

September 25, 2007

Saving Giovanni +190

Delta Found Grandma Judy's Luggage

 

Giovanni had a great day. No vomiting and we feel he's coming to the end of the steroid withdrawals. He ate baby food again, his vocals are increasing, and he he rolling over frequently. Developmentally he is about 7 months behind. His central line will be removed soon and his G-tube will be replaced with a button, so he will be able to lay on his stomach without being stuck by anything and we wont have to worry about him pulling out the lines.

 

We did a bone marrow drive at Boston City Hall today and added 71 more people to the registry for a grand total of 9,762. We are poised to break 10,000 donors soon. Halfway to our goal.

 

September 24, 2007

Saving Giovanni +189

Delta Airlines: Where is Grandma Judy's luggage

 

Giovanni got up three times last night and each time had a soiled bottom. Still no vomiting and we are ina sixth and final week of steroid reductions. Giovanni ate solid food again this morning and is doing well. We had a little scare this weekend when his arms broke out in red spots but they were not Chicken Pox and disappeared.

 

Giovanni's immuno suppressant cyclosporine is being reduced over the next few months so the doctors feel that may be the reason for the spots.

 

September 23, 2007

Saving Giovanni + 188

 

Giovanni had a good night. No vomiting, no problems. We all attended the Kids Fest bone marrow drive with Auntie Deanna and family. Giovanni hung out the entire day smiling and playing to any camera that snapped a picture of him. Many people knew Giovanni and we even met Mrs Ward and her daughter who had a bone marrow transplant in January. They were in the room next to us on the transplant floor at Boston Children's hospital.

 

We had a great day. At the kids fest we added 172-life saving donors to the registry and and 17 more at the UMass Walk to Cure Cancer. Giovanni has now added 9,689 people to the registry and we are still waiting for the numbers on a drive DKMS did in Maine. Delta Airlines has still familed to find Grandma Judy's luggage.  

 

September 22, 2007

Saving Giovanni +187

 

Giovanni got up about three times last night and I let mom sleep through the entire night. She went out in the morning while Grandma and I watched Giovanni. Terry Nichols is doing bone marrow drives today and tomorrow at Wachusett Mountain Kids Fest in Princeton, MA. Christina, Giovanni and I are going tomorrow to help and enjoy the day. Giovanni was nice to Grandma today and let her hold him for quite some time. Everything is going well.

 

Grandma Judy went home this afternoon. Christina and I dropped her off at the Manchester Airport and she flew home. She arrived in NY four hours late plus Delta lost her luggage that contained pictures of Giovanni and cousin Leila's birthday present.

 

 

September 21, 2007

Saving Giovanni +186

 

Giovanni did great all day and even went out to eat with the family. Grandma Judy and God Father Marty enjoyed the food at Whippersnappers. All of Giovanni's friends came over to say hello and he loved the attention. No vomiting today, temperment was good, and he ate nearly 10 spones of food for breakfast.

 

September 20, 2007

Saving Giovanni +185

 

 No entry.

 

September 19, 2007

Saving Giovanni +184

 

Giovanni had a terrible day. He could not get comfortable, cried, didn't nap all day, and wanted his mother. He did let Grandma holds him several differnt times, and stayed with me for a while. Mom got a small break in the morning running some errands and I help Giovanni while watching a movie.  

 

He finally went down at 8pm.

 

September 18, 2007

Saving Giovanni +183

 

Giovanni had physical therapy at 8:30am. His trunk is getting stronger and he is turning over. He still can't sit up by himself, and laying on his stomach is uncomfortablebecausehe has a chest tube and G-tube. He is developmentally behind by at least six months. Still no vomiting, but still agitated and uncomfortable.

 

Grandma Judy is still hear and Giovanni is letting her hold him for longer and longer periods, which is making her very happy.

 

I got up with Giovanni while mom got a full night sleep.

 

September 17, 2007

Saving Giovanni +182

 

No entry. Having fun with grandma Judy.

 

September 16, 2007

Saving Giovanni +181

 

Giovanni is doing well. Some mood swings and attention seeking from mom and I but no vomiting. He again ate, not much, but still some. Grandma is still hear with Giovanni and also enjoying his antics. See below thank you and article about Giovanni's Franklin Marrow drive.

 

 

September 15, 2007

Saving Giovanni +180

 

SIX MONTHS POST TRANSPLANT. Giovanni is a the halfway mark. Today is six months post transplant. Day 100, 180 and eventuall one year are the mild stones that we strive for with a bone marrow or cord blood transplant. Giovanni's nurse Linda was over for the day and in the morning he was giving her hell. He was crying and would not stop. I picked him up and he stoped like water when you close the handle. He then smiled at Lind and Grandma knowing he got to dad. If Me and Mom were in the room he's cry until she picked him up and then he's smile at me. He loves mom and dad.

 

September 14, 2007

Saving Giovanni +179

 

Giovanni had a good vist at Dana Farber. He lost weight, 14.6 lb, but he grew another 1/4 of an inch. His blood counts were good but his crid down a little. He is still going through sterioid withdrawals, but not vomiting. He is talking more, showing more of an interest in eating, and in a few weeks his immuno suppresant medications will begin to tapper off. Grandma Judy went to Dana Farber with mom and Giovanni. Giovanni is again protesting car rides and giving mom a terrible time.

 

September 13, 2007

Saving Giovanni + 178

 

Big day for Giovanni tomorrow with his Dana Farber visit. We hope he put on more weight or grew. Up sevearl times in the night itching or neededing a change. No vommiting, typcal child today.   

 

September 12, 2007

Saving Giovanni +177

 

Another restless night, but Giovanni had a good day with a few bouts of crying, no vomiting. He is starting to get more vocal again.

 

Please enjoy WMUR report on Sept 10, City Hall Marrow Drive: WMUR Report

 

September 11, 2007

Saving Giovanni +176

 

Giovanni got up about five times last night and had a very hard time getting to sleep. He didn't vomit but the withdrawals are showing in his temperment. We are nearing the end of week four. Giovanni's grandma Judy is coming up from New York to spend 10 days with us to help with Giovanni. During the day his spirits were high, but he's not napping well and constantly seeking mom's attention. He wants her to hold him. In a closing note, we remember all of those who lost their lives on this day.

  

September 10, 2007

Saving Giovanni +175

 

Giovanni slept well last night only getting up twice. He didn't vomit all day, and ventured out with Mom and Linda, his part-time nurse--who he loves--for a special appearance at a very special bone marrow drive at Manchester City Hall that wa organized primarily by Dale Robinson, the former Manchester Deputy Chief of Police and SERT Team leader who gave the green light to shoot me over 20 years ago during the most shameful day of my life, which you can read about in Giovanni's press file.

 

We had a great drive registering 101 people, and Giovanni was the star of the event. Giovanni has now inspired 9,420 people to join the registry. He did, however, have a melt down on the way home in the car. Christina feels he's starting to dislike driving again, as he did when he first came home. He is beginning to become vocal again. When the doctors started to reduce Giovanni's steroids he slowly stopped eating, then drinking, speaking, and his vocalness is starting to return. He's eating some food, but will not drink anything. Were in the fourth week of steroid reduction with 2 to go. WMUR News also did a great piece for us, please enjoy watching it at: WMUR Report

 

 

September 9, 2007

Saving Giovanni +174

 

Another restless night and this morning Giovanni threw up all over my chest. Four days without vomiting. We beleive, however, he threw up because he would not stop crying got nearly half an hour and upset himself thereby inducing the vomit. He did smile at me though, after throwing up, so at least his stomach felt better and he stopped crying.

 

September 8, 2007

Saving Giovanni +173

 

Another restless night, but no vomiting. Giovanni is waking up all night loon screaming from the itching. He's itching his face, chest, and when the itch subsides he goes back to sleep.

If it gets any worse we may have to put gloves on him again to keep him from breaking the skin and potentially causing an infection, which would put him back in the hospital. He was very happy for most of the day and actually went to sleep fairly easy about 7:30pm.

 

September 7, 2007

Saving Giovanni +172

 

No vomiting today, some agitation, another restless night, but still doing well. Giovanni is still smiling and playing with his brothers and today we took him to Manchester to meet Dale Robinson and others on Elm Street. He behaved very well, as did Adrian, and many people recognized Giovanni. We are preparing for our September 10 drive at Manchester CIty hall between 9am and 3 pm. If people keep coming we will extend it. Please send everyon eyou know.

 

September 6, 2007

Saving Giovanni + 171

 

Giovanni made it another day without vomiting. But he had a serious melt down today, itching was an issue, very agitated, and restless again during the night. We are nearing the end of three weeks of steroid withdrawal with possibly another three weeks to go. The doctors say it takes 4 to 6 weeks to get them completely out of your body. We are scheduled for a Kiss 108 interview September 18 at 9am.

 

September 5, 2007

Saving Giovanni + 170

 

Yes, an entire day without vomiting. You go Giovanni. Were in the third week of steroid withdrawals and although we are seeing agitation we are not seeinf drastic mood swings or bursts of anger. He is, however, very restless at night. His itching seems to be increasing. One of Giovanni's major problems before his diagnosis was itching. We had to put socks on his hands to stop him from scratching himself raw and getting an infection.

 

September 4, 2007

Saving Giovanni + 169

 

Giovanni made it through the entire day without throwing up and even ate some baby food. He's into his third week of steroid withrawals and it appears he's on the mend. No word from  Hillary yet or the picture for us to post but we are working on it. We hope to post that picture as soon as possible.

 

September 3, 2007

Saving Giovanni + 168

 

Labor day, no work, Giovanni celebrated by throwing up all over my chest to ring in the day. When he was done he looked up at me with a big smile on his face. "Feel better baby boy." Man, I love this kid.

 

September 2, 2007

Saving Giovanni + 167

Giovanni meets Senator Hillary Clinton

 

Giovanni had a good night sleep and again kept down his food. In the morning we relaxed around the house and then set off to bring Giovanni to his first Hopkinton Fair. He loves a  crowd. We saw some friends and several people who had seen Giovanni and us on TV or read about him who came up to say hi and thank us for what we are doing. We thanked everyone and gave them a Giovanni business card.

 

Christina and I had a BBQ dinner and even gave Giovanni a taste of ice cream which produced quite a smile. Christina and I then walked around the fair and while walking out of an exhibit Christina said:

I looked and saw Hillary bending down saying hi to a child and then felt Christina's hand in my back shoving me out the opening of this barn we were leaving stating: "Get out there and say something."

 

A chest full of tattoos, bald head and muscle shirt, the holder of a Master's Degree in political philosophy I bumbled: "Hillary, take a picture with my baby boy, he's a famous baby."

 

She came right over to Christina and me and shook our hands, I handed her two of Giovanni's cards, and she looked down at him saying what's wrong with him? I then explained his story. She also said, as I've heard from many others, "He looks like an old soul." Indeed, having suffered as much as he one would earn such character.

 

Governor Lynch and his wife Susan were with Hillary and Christina asked the Governor if he knew about Giovanni. "Tell me a little,"  which she did and he said "yes." When I asked Mrs. Lynch she immediately said yes.  I asked if she heard about the latest drive we organized at Manchester City Hall on the news and she nodded. I then told her I'd like to have a drive at the Capital and she advisded me to write Senator Clegg, who mentioned something about a drive. (The email to him is already sent.)

 

Hillary listened to me speak about Giovanni's condition, the need for bone marrow and cord blood donors in this country, the kids dying who can't find a match, and about the number of people we've put in the registry at Giovanni drives. She listended to everything I said replying that she knew the insurance industry will pay for the transplant process but not the search for marrow. We both agreed that was proposterous and tantamount to putting the  horse before the cart. She kept looking down at Giovanni and seemed mezmerized by his eyes while I rattled off bone marrow statistics and he looked up at Hillary knowing not how very important a person she is. Glancing from Giovanni to me she said, "I'll see if we can help."

 

Then Hillary asked me where my camera was, and I said, "I don't have one." She called an aid over to take the picture. I handed Giovanni to Christina, she stood next to HIllary, Me behind Christina, and Mrs Lynch on Hillary's left side. After the pictures she told me she would get it to us. I then heard Christina say to Hillary, "You got my vote," and Hillary replied, "Oh, that's good, thank you."

 

A few people from the crowd took pictures with their camera phones and said they would email them to the site, so as soon as I get one I'll post it. A bunch of reporters also took pictures and asked for Giovanni's card. We said bye and Hillary walked away with her crowd.

 

Amazing. What an incredible chance meeting. She's the most famous person I've ever met, and what a wonderfully pleasant and kind woman. She walked up to me without hesitation and many describe me as an imposing man. The bald head, of course a show of solidarity to Giovanni when he lost his hair from chemo, and then the tattoos--especially the Giovanni tattoo on my skull but how could I cover my walking billboard.

 

In any event, I predicted many years ago when I watched how honorably Hillary handled herself as the first lady during two terms of Bill's presidency that she would be the first woman president in this country and I stand by those words.