October 30/31, 2007
Saving Giovanni +223-224
Giovanni is doing incredible. We are simply beside ourselves with happiness. His disposition is completely and dramatically improved by the day with respect to his interaction, vocalization, mobility, alertness, strength and happiness.
Today we took Giovanni out trick or treating for his first Holloween with his brothers. He was dressed as a skelleton, Adrian as a dinasuar, and Alex as a dragon. The kids cleaned up with the candy but its sad to say that Holloween is nothing like it use to be when I was a kid. And the kids are certainly much nicer. If you had a house where I grew up and didn't hand out candy you'd get some complementary eggs, toilet paper, and shaven cream decorations.
Anyways, Giovanni loved being out in the action and we stopped bu to see many of our Concord frends who hadn't seen Giovanni in a long time. Everyone is amazed at how good he looks. We are closing another month and nearing Giovanni's 8th month post-transplant.
Dana Farber gave us the go ahead to start feeding Giovanni canned fruit and vegtables, as well as to lower his protonics medication. All the meds are going down and within two months he may be medication free.
October 29, 2007
Saving Giovanni +122
Giovanni is free from his central line after having a hole in his chest since April. He can now have a bath, no more bandage over half his chest, and no more risk of the line becoming infected and putting him back in the hospital. He sailed through the minor surgery like a champ but when he woke up to find an IV in his ankle he threw an Italian/Greek/Irish that nearly cleared the room. When the recovery room nurse went to remove the IV Giovanni's nurse Linda interviened stating "he's my baby, he's my baby," I'll remove that IV. She loves Giovanni and he loves her.
Some even greater news we received today is that Giovanni's blood work shows his cells are 100% donor cells meaning he has subsumed the cellular identiy of the donor's cord blood. That is, none of his defective cells are present in his body and his transplant is thus far successful. We still have a one year window during which there could be problems with the transplant but the doctors are extremely possitive about Giovanni progress.
Giovanni is also cutting his first teeth. Yes, that's right. Now this is of vital importance because the NEMO condition can present
ectodermal dysplasia (ED), which is the inability to cool one's core body temperature requiring precautions such as a temperature controled environment or his body could overheat causing the death of brain and tisse cells. A tell tale sign of ED is
conical or canine teeth, which must all be removed.
Giovanni's spirit in the last two weeks has improved remarkably. He is playing, vocalizing, interacting, laughing, the smiles are endless, and he is an absolute flirt. He loves to be around the ladies, knows when he is the subject of attention and completelly plays to it. We are just so happy workd can't describe it. He has suffered so much and what we've witnessed to now is simply beyond words.
October 28, 2007
Saving Giovanni +121
Giovanni had another great day and tomorrow will be even better when his central line is removed at Boston Children's Hospital. He will no longer have to have half his chest covered in a bandage, he can now sit in a bath, and it will be a huge milestone. Seven months post transplant and five month to go to close the one year window in which major issues can arise with respect to a bone marrow transplant.
October 27, 2007
Saving Giovanni +120
Christina and I spent the entire day with Giovanni. We went to Target to get him some Triple Paste and other things thanks to the Italian Welfare Leauge of NY that sent us a substantial gift card for Giovanni's care. Christina bought Giovanni foot rattles, diapers, a new stroller, baby food, bath products, spoons, clothes, Triple Past, which is the best produce ever for treating a broken down bum and finally she will be buying a humidifier from Target.
Giovanni needs a humidifier in his room because his nose keeps drying out making him itch and wake up crying. He is also getting stuffy which is also waking him up. One of Giovanni's medical problems from the NEMO is a skin condition that makes his face, eyes, and nose itch. As his meds are reduced and eliminated, such as the steroids and cyclossporine, which are immuno suppresants, his body is starting to itch more. Especially his eyes and nose thus increasing his discomfort level and waking him. We hope by adding a humidifier the his eyes and nose will stop itching.
Giovanni was recognized by at least one person in every store we went to. He is known by many. We had a great day playing with him and he loved the attention he got everywhere we went with him.
October 26, 2007
Saving Giovanni +119
Giovanni had me up six times last night serving him his pacifier, covering him with the blankets he repeatedly throws off and changing a few soiled diapers. I love it. There's nothing greater than a big smile from him in the middle of the night after so many days without them.
He had a great day and we spent several hours together while mom took Alex and Adrian to soccer practice. While I had Giovanni on the floor lying on his back I turned my head to answer my phone and when looking back saw that he had rolled over onto his chest and up onto his elbows reaching for a toy. I was shocked.
Christina, Christina, Giovanni just rolled over, I yelled into the phone
He did
yes
He's on his elbows
That's great.
Giovanni still has his central line, which is being removed Friday, and a G-tube. We felt these devices would impede him from trying to crawl or even being on his stomach because they protrude from his chest and we thought they would hurt him. I'm glad we were wrong and hopeful that now he will start kicking those legs while on his chest and start crawling. Time will tell and we will keep you all posted. Have a great weekend.
October 25, 2007
Saving Giovanni +118
Giovanni slept through the entire night. He had a great day and its simply so wonderful to see him happy and playing when this time last year we were struggling for answers as to why he kept getting life threatening infections, a severe skin condition, could not hold down any food, had failure to thrive, and a white blood cell count that was extraordinarily high. At this time we were in Dartmouth Hitchcock in Lebanon, NH. A great hospital and great staff but Giovanni was extremely ill and unable to put on any weight. The doctors were all searching for answers and Grandma Judy was by Giovanni's bedside the entire time he was in Mass General, then Dartmouth, and in the ambulance on the way to Childrens once the hospital determine3d Giovanni had a immuno deficiency that could only be treated at Boston Children's Hospital where the world's experts in immune system diseases practiced medicine, no miracles, as we would come to find out.
Its all like a blur. I can remember the doctors calling us into a meeting and telling us they through Giovanni had Boy in the bubble syndrom and that he had a 50/50 percent chance of living. The day he was transferred to Boston Childrens I can remember walking out of the hospital. I was wearing a full length black leather jacket, boots, had all my hair at the time and I was holding Giovanni's car seat in my right hand. Attached to the car seat where two balloons: Get Well Soon.
As I walked down that sidewalk on this brisk winter day tears ran down my face with each step and the people coming up the sidewalk towards me parted and put their heads down not wanted to look at me. I can remember as I made each step how I fought the tears, struggling to control myself and not breakdown hysterical.
I got to the car, put the car seat in the back, got in the front seat behind the wheel and cried like I've never cried in my life. My child, my baby boy was dying, and no one knew what was wrong with him or how to help him. As I regained my composure I navigated out of the hospital parking lot, through the town and to the highway and as I was driving tears rolled down my face and I screamed why, why my son, as so many must have before me, and I beat my steering wheel with all my strenght trying to rip break it from the column. My only thoughts: the son paying for the sins of the father and all I wanted was to lay down my life in his place.
October 24, 2007
Saving Giovanni +112-117
I am so so sorry to all of you who log-in everyday to check on Giovanni but he is simply doing so wonderful and I am so busy trying to make money and pay the bills as well as fill the registry with life-saving bone marrow donors that I've been remiss in my obligation to infomr you all about Mr G. Yes, Mama has begun to call Giovanni Mr. G because he is the boss. Her life-our lives-evolve around Mr G. Also, its hard to say everyday: Giovanni si doing grat today, but Giovanni is doing great. At his Dana Farber check up Friday we learned he's over 15lbs, 15.04 to be exact, he is over 7 months post transplant, 26 inches long, his blood labs are excellent, and the doctors are simply amazed. They took a double when looking in the hospital room to see Giovanni sitting up on the bed smiling and shaking his head back and forth while entertaining mom, his grandma, Godmother Elena and Elena's mom who was visiting from Italy and brought him a wonderful push walker by Chicco.
Yes, things are great. His rash went away, he did have a badly broken down bum for several days but the Triple Past took care of that, no throwing up, and he's continuing to eat and drink like a growing and healthy baby boy.
We did break the 10,000 donor mark this weekend so I've revised our pledge to 100,000. Lets turn New England into the life saing states and save hundreds of lives. We will become the beacon of the bone marrow movement and then campaign across the contry to enact laws such as ours that mandate one's health insurance pay the bone marrow donr fee as the laws in NH, MA, and RO mandate.
And finally, our best piece of news is the Pope may baptize Giovanni. Its not confirmed yet, but it looks like it may happen. The Italian Consulate General of Boston is leading the request and we are very hopeful. I promise to right again soon. But in the meantime any of you who want to email me can at
mguglielmo@helpgiovanniguglielmo.org and I'll give yo ua personal up date on Giovanni.
October 15/16, 2007
Saving Giovanni +110/111
Giovanni continues to do well. His appetite is increaseing, he's drinking more, holding the bottle himself, he is standing on his legs and holding up his weight when we hold him, and he is continuing to vocalize. He is still very attached to mom, however, and if she is anywhere that he can see or hear her he will cry and cry until she picks him up. I can calm him much of the time when mom is not around and sometimes when she is, but when he gets his mind on him mother he is determined to get her attention.
HIs cyclosporing level continues to decrease, he has a check up at Dana Farber Friday, and so far we've seen no sign of any increased skin irritation or breakdown. We will contine to monitor his skin as the drug us decreased.
October 13/14, 2007
Saving Giovanni +208/209
Giovanni had a great weekend, and we actually have him standing while we hold him under his arms. He is eating great and drinking. His cyclosporine, an immuno suppressant, was reduced further this past week and the withdrawal will continue until Giovanni is completely off the drug. One concern of the doctors at the final point of reduction is that Giovanni's skin condition from the NEMO will manifest thus revealing if its mild to severe.
October 11/12, 2007
Saving Giovanni + 206/207
Giovanni visits his friends at Salem High School who held fundraisers and took his medical case to the national competitions. See Front Page Eagle Tribune article:
Baby Giovanni Visits Salem High School Behind Giovanni next to his mom is Kaytelyn Fancy the student who initiated the Giovanni campaign in the community and won Distinquished Student of the Year Award for her selfless community action.
October 10, 2007
Saving Giovanni +205
Giovanni is still doing great. All is well. We are approaching the 7th month post-transplant mark.
October 8/9 2007
Saving Giovanni +203/204
Giovanni is continuing to do great. He is playful, reaching for everything that comes within his eye site, and anything he grabs he inspects, chews on a little or quickly dispatches to the ground. Mom calls him the boss. ("I have to go, the boss want me," No, I can't do that the boss wont let me," "I'm too tired the boss hasn't let me rest all day," "No, I didn make any phone calls for you today Michael, because the boss wont let me out of his site," etc, etc.)
Greg Travaglio one of Giovanni's special friends and breathren from Italy who works for Caitlin Raymond INternational Registry with Nancy and the rest of the bone marrow recruiters call to tell me yesterday that he added an additional 32 donors to the registry in Giovanni's honor bringing our total to 9,977. We will be halfway to our goal shortly.
We are ramping up to kick off a bunch of bone marrow drives so anyone who wants to help of organizea drive please write me or one of the directors on the Contact page.
October 6/7 2007
Saving Giovanni +201/202
I spent the weekend on Martha's Vineyard doing two bone marrow drives with Anna and members of Caitlin Raymond Registry. We added another 118-life saving donors to the registry in two days. We always hope to do more but we need to educate the publis more about the process. Many people are scared to become donors--especially men. I'm very disappointed in this gender given that 72 percent of all donors are women. It's a sad statement on men and many women when I say would you like to save a child's life today and they say: "No," No thank you," "I don't have time," "maybe another day" or "don't bother me" as one cowardly man from the Vineyard said.
Some are afraid of the little discomfort one will feel from the extraction. Are you kidding me. How about the child who could possibly live but will instead die uttering the last words "did they find a match for me today ... mommy, dad." Children are dying everyday because thousands of people are affraid to feel a little pain." That is a pathetic excuse that one should hide in shame for stating in the light of day. I'd let someone run my leg over with a car to save a child's life. Hell I'd do worse. Indeed, I'd give my life to save the life of my own child, Giovanni.
It's a travesty that in the most powerful country in the world our children are dying because there are not enough people in the registry to save them and we've failed to educate our populus about its civic duty to those whom live in our body politic. Shame on all of those who would allow a child to die for fear of suffering a little pain for a life.
Now that I'm done with my editorial Giovanni is continuing to do well. In fact, Friday and Saturday night he only got up once during the night for mom. When I came home Sunday night he regressed to six times.
Mom and company did a Walk-A-Thon and marrow drive at the Irish American. They added 2-life saving donors to the registry. Giovanni has added a total of 9,942 donors at his drives in just 9 months. Check out our Walk-A-Thon slide show.
October 5, 2007
Saving Giovanni +200
Giovanni is doing great. He's talking, eating, drinking, and completely withdrawn from the stroids. Its simply great to see. He's playful, shakes his head back and forth saying "no" and anything within reach is getting knocked over, gummed, or thrown on the ground. He loves coke cans and is always trying to grab them. If you're holding one he will reach out to you to hold him and as soon as you take him he goes for the can.
Today is Giovanni's 200th day post transplant. In several more days he will be seven months post tranplant with five more months to do to close the one year transplant window for rejection or host versus graft disease.
October 1, 2, 3, 4, 2007
Saving Giovanni +196 - 199
I am so so sorry for not up dating Giovanni's medical progress in several days but I have been very very busy and Giovanni si doing simply wonderfully. He started drinking from the bottle again, eating great, and he even said daddy the other day after not saying anything for over 6 weeks. He is also screaming in joy when Adrian and Alex play with him. He loves his brothers. The other day Adrian was biting Giovanni with his Duck hand puppet and Giovanni was screaming in laughter. His spirits are great.
He did keep us up the other night but he was just having a bad day. He is getting along wonderfully with his parttime nurse, Linda. He lets Linday hold him and everything. Some days he gives her a hard time but he eventually gives in to her charm and compassion for him and all is well.
Tomorrow is Giovanni 200th day post transplant. It all seems like a blur. One day we were desperately striving to Save Giovanni, holding vigil by his bedside 24 hours a day with the help of caring friends and family. Giovanni faced death four times and each time he bounced back.
I can remember when we decided to begin holding bone marrow drives to find a match and held our first at the Galleria Salon in Laconia, NH, and only 17 people signed up. I was devastated. And this weekend we will break 10,000. We are holding two drives on Martha's Vineyard, the first in the history of the Island, and one at the Malden Irish American with the Walk-A-Thon.
Its all good now. Giovanni is doing great and we are trying to attain some normalcy in our lives although its very dificult. Again, we thank everyone for the contiuing support and ask again to please contact us if you'd like to hold a bone marrow drive and help us save some lives.