December 18-24, 2007
Saving Giovanni 272-278
Merry Christmas
Last year at this time was an especially tough time for us. Giovanni was in Boston Children's Hospital where we were waiting for a life or death diagnosis. Even the lesser of the two diseases, NEMO, gave Giovanni a 50% chance of life and would at worse require a bone marrow transplant. Indeed, we were also informed that the chances of finding a match for Giovanni were unlikely because of his background--Italian, Greek, and Irish. When someone tells you if you don't find a bone marrow match for your son he will die its a shock to put it simple. I, however, would move a mountain to save my child and set out on my campaign to fill the bone marrow registry with as many people as necessary to Save Giovanni.
However, before we found a marrow match Dana Farber located a cord blood match that was a 5 out of six match. The stage was then set for Giovanni's next battle. Chemo to prepare for the transplant. The chemo was tough and eventually put him in intensive care fighting for his life again. He survived.
Friday Giovanni's went to Dana Farber for his monthly exams. He's 16.6lbs and the doctors are impresssed with his condition. He is however, facing the ectodermal dysplasia, but he will deal with this challenge too.
We are grateful to have our son home and thank the talented and professional staff of Boston Children's Hospital, Dartmouth HItchcock, the media outlets that aided our effort to hold bone marrow drives, Clear Channel Outdoors, Bob Murry Billboards, and CBS Outdoors for the Giovanni Save A Life Bone Marrow Drives, and we thank all the people from all over the world who supported us with donations, prayers, and love. Through the combined efforts of many we celebrate our first Christmas home with Giovanni and for these feelings I have no words. Merry Christmas to all. Giovanni and family.
December 14-17, 2007
Saving Giovanni +268-271
Giovanni is still doing well, but the ED with respect to the defective teeth is becoming more prevalent. On December 21, Giovanni will have his first appointment at Boston Children's Hospital to begin diagnosing the ED with a team of doctors specializing in the disease and examining the various body organs and systems that can potentially be effected by ED. There are over 100 types.
Giovanni is still doing great. He's happy, eating, having fun, and enjoying life. Last year at this time he was struggling for life. We are having the First Annual Giovanni Chrstmas party this year on the 21. RSVP at
mguglielmo@helpgiovanniguglielmo.org.
December 12/13, 2007
Saving Giovanni + 266-267
Giovanni is doing well. Teeth are presenting sharp and
conical consistnt with ED. We are also seeing the effects of his chemo with respect to the discoloration of the skin and blotchiness, but the doctor said this will do away. One of the many possible effects of
ectodermal dysplasia (ED) is a skin condition.
Next week we are taking Giovanni, his brothers, and some of the Giovanni bone marrow drive volunteers to the Polar Bear Express train ride. Last year we brought the boys while Nana watched Giovanni and it was heart breaking for me that he was not with us, but we did bring him back one of the bells that I hung from his crib and he loved it. This year he will be there. We are also having the First Annual Giovanni Christmas Party at our home on the 21st starting a 6pm. If you would like to come and meet Giovanni write me at
mguglielmo@helpgiovanniguglielmo.org and let me know who you are and what time you will be coming.
December 11, 2007
Saving Giovanni +265
Giovanni, mom, and Lindo were off to Boston Children's Hospital at 5am for his GI appointment. The doctor said Giovanni looks fabulous and told mom to keep up everything she was doing. The doctor declined to but a button in at this time, but it is scheduled for January. Giovanni's next hospital appointment is the 21st of December at which time a team of doctors will begin the diagnosis for his
ectodermal dysplasia (ED).
Otherwise he is enjoying life to the fullest. He loves playing with his brothers and the elimination of his other medications has had little adverse effect on his behavior. He is struggling with a cold and a stuffy nose, which mom clears with a nose asperator. He hates it. But when his nose if stuffy he hates that too and keeps itching his nose, waking himself and then crying. He is sleeping well for us, and generally gets up two to three times a night.
December 4-10, 2007
Saving Giovanni +264
Giovanni is no longer taking cyclosporine or magnisium. He was a little irritated for a few days but nothing serious and we've seen no adverse signs from the elimination of the medications. He now has three required medications: protonics: prevents reflux; bactrim: prevents pneumonia; and reglan pushes food through the bowels. He also takes fours other medications as needed: Atiriax: stops itching; Ativan: pain reduction; and Benadryal: reduces itching. Once the three required medications are eliminated Giovanni's immune system will be functioning completely on its own.
With respect to Giovanni's
ectodermal dysplasia (ED) diagnosis the workup will begin December 21. Of course, we are hoping he has a mild form of ED, but at least its not life threatening. We hoped he was in the clear having suffeed all he has to this point but I guess that's just not in Giovanni's cards. One more obstacle for our boy and like every other battle he's fought we are confident he will fight the good fight once again.
Tomorrow, however, Giovanni will be at Boston Children's to see his GI doctor who we hope will replace his G-tube with a button. The button is less obtrusive and will allow Giovanni to roll around on his stomach and also eliminate his ability to pull on the tube resulting in his screaming in pain. The buttin is much more convenient also. Giovanni's sometimes opens the G-tube allowing the contents of his belly to spill on his clothes or whereever, and sometimes we actually open it moving him around while carrying him.
Overall, he is doing great. He's playing, talking, smiling, laughing, loves a crowd and we are very very happy to have our baby home for Christmas this year.
We did bone marrow drives last week at the NH Community Technical College in Laconia adding another 64 life-saving donors and one at the Harvard Institute of Medicine adding another 52. Giovanni's total is now 11,044 and we also received notification that two more NH people from Giovanni bone marrow drives are matcehs to people needing a marrow match to live.
December 3, 2007
Saving Giovanni +257
Giovanni had another bout of throwing up today, three times. This week is his last for the cyclosporine and magnizium. The cyclosporine is an anti-rejection medication, which eats the natural magnizium within the body thus the supplemental magnizium to conter the effects of the cyclosporine. We are hoping that he is vomiting from the withdrawal of these meds and that nothing else is wrong. His teeth are breaking through in the
conical shape indicative of
ED so we will now begin the journey down this diagnostic path hoping that his case will not be as serious as it can given the over 100 types of ED that exist with different affects on the body. Giovanni will now face another trial, and I will once again retreat to the quote so many of you may have read during Giovanni's greatest struggles: That which does not kill us only makes us stronger.
December 2, 2007
Saving Giovanni +256
W enjoyed the morning with Giovanni and Nana came over to watch him for the afternoon while Christina and I did a bone marrow drive at Whippersnapper's in Derry where their was a cancer benefit for a youg kid named Cam. We added another 119 people to the registry bringing Giovanni's total to 10,930. Giovanni has been agitated for the last few days at times, which we are attributing to two things: (1) withdrawals from the medications that he's been on for nearly a year, and (2) his teeth are coming in. And yes, we are now seeing three teeth that are
conical and canine shaped. We've notified the doctors and Giovanni is scheduled to see his doctors on December 21, to being testing to deterime if and what type of
ectodermal dysplasia (ED) he may have. There are over 100 types of ED.
December 1, 2007
Saving Giovanni +255
Giovanni had a good Friday, but scared us Thursday night when he starting vomiting in his bed while sleeping. We cleaned him up, and took him to bed, discontinuing his nightly feed. Not long after laying down with us he began throwing up again. We cleaned him us again and he slept through the rest of the night. When something like this happens its sends chills through you because you just don't know what's wrong and possibly getting sick. Going through a transplant is like walking on a razor all the time.
The four day bone marrow drive we just completed that was sponsored by Youth Services of America and held at the College Convention organized by New England College added 108-life saving donors to the registry. We met a bunch of really good young adults who will be an asset to our country.