August 31, 2007
Saving Giovanni +164
Giovanni recieved a great report from Dana Farber today. Although Giovanni's been throwing up for the last two weeks he still managed to gain 3 oz and is now weighing in at 14.11 lbs. He also grew half an inch in two weeks and his labs were great. With respect to his agitation and vomiting the doctors attribute this to the removal of the steroids. They feel it will take four to six weeks for the drugs to leave his body, so he has four more weeks of suffering. In the next month the doctors are also going to start reducing Giovanni's immuno suppresant, cyclosporine. Giovanni's list of medications has been reduced to four, and he's over five months post transplant. Thus, we end the month of August on a good note and enter September at a run.
August 30, 2007
Saving Giovanni +163
Giovanni slept very well in our bed last night and only woke up a few times for his pacifier. He didn't vomit any of his food and was very comfortable. Christina and I also got a relatively good nights sleep in comparison to other nights. I only had to change him once, and I woke up a few times to postion him. We hope he has a better day then yesterday. I'l update this later.
August 29, 2007
Saving Giovanni +162
Mom had a rough day with Giovanni. He would not let her put him down, could not get comfortable, would not eat any baby food, and only slept for five minutes. We have moved Giovanni into our bed in hopes that he will be more comfortable with us by him and make it easier for us. We have been running in and out of his room every night at every sound to make sure he's not choking on his own vomit. We think the steroids may be working there way out of his body and all the conditions that were masks may manifest. He's starting to itch at his eyes and face again, and also at his skin. And of course he is very uncomfortable. The sterioids addressed his itchy eyes and skin.
The doctors feel he may have a virus but one he gets his IVIG infusion Friday that any virus he has will be killed. He's going on his 3rd IVIG treatment in over five months. Most kids who get a transplant are geting IVIG regularly or at leadty admitted back into the hospital for an infection. Thus far Giovanni is doing great with the transplant.
August 28, 2007
Saving Giovanni +161
Giovanni didn't throw up last night, but he did this morning. He also had a temperature in the late afternoon but it finally came down. The family spent the day with Giovanni.
August 27, 2007
Saving Giovanni +160
Giovanni woke up to lots of company this morning. His Great Uncles Donald (Duck) Gatto, Joe Conroy, his Uncle Tommy, and second cousing John Bergin. All from NY, with the exception of Duck, who lives in Florida. And yes, all Yankee fans.
My Uncle Duck spent his life as a master mechenic. He could fix anything. He was also a party animal and professional bachelor. Growing up next to Uncle Joe he was the coolest uncle I had. I actually lived with in Brooklyn when I was a kid because no one else could handle me. And I worked with Uncle Joe as a mechanic's helper off of Flatbust Ave in Brooklyn, NY.
Since Christina and I have been unable to travel we never made it to Florida to visit Duck and when he received his cancer prognosis he decided to take a road trip, his last road trip, to tie up his affairs and visit his family and friends in NY. While I was confined he supported my education, bought me books, sent me money for Christmas and my birthday, and I called him every month collect to speak with him.
When he saw Giovanni in the morning his eyes welled with tears. He hugged Giovanni, said he has prayed for him everyday.
Poor baby, the suffering, I can't imagine. We know what is happening to us, but a baby dosen't know why it is in pain or how to stop it. It's terrible.
My God, this poor child. Chemo almost killed me, how could he stand it. He's beautiful, look at those eyes. Grandma would have loved this baby.
Duck hugged Giovanni, touched his foot and sat down. Giovanni looked at him and smiled. Duck started laughing and again said he's a beautiful baby.
We had a BBQ in the afternoon, Duck took a nap, and we had BBQ steaks for diner. Duck is very tired. He has about 20 medications he's eating. He's in denial, later saying: This is a beautiful house, were gonna come visit every year.
Duck, I said, why don't you just come stay her with us and the kids.
No, I have to go back to my home
You have no one there, you need to be here close to family now.
I'll think about it.
August 26, 2007
Saving Giovanni +159
Giovanni broke his NH record for a bone marrow drive adding 220 people to the registry today at Heritage Harley Davidson's 25th Anniversary. Thank you Harley Davidson, staff, biker enthusiasts, and the people of NH for helping us save lives. Giovanni made a personal appearance at the drive and the always supportive WMUR News represented by Josh Davis did a great interview.
Giovanni is still dealing with the withdrawal effects of the steroids and still throwing up. He is fine at times and then at others just can't get settled. He is not sleeping well at all. We are up at night with him 5 to 10 times so Christina and I are getting very little sleep. As a matter of fact, I fell asleep at the week of the Caravan today crossing the yellow line and almost hit a truck pulling a trailer on Rt 106. Scared the hell out of me.
Giovanni is being visited today by his Great Uncles Duck and Joe, his cousin John and Uncle Tommy. The uncles have come to see Giovanni because Duck has reached the last stage of treatment for cancer and advised he is going to die within weeks. So Duck is seeing everyone and settling his affairs in NY, visiting NH to see Giovanni and me, and just taking in all the sites and resting on his last road trip.
August 25, 2007
Saving Giovanni +158
Today we hope to break the NH record for a Giovanni bone marrow drive at Heritage Harley Davidson's 25th Anniversary. Giovanni will make a personal appearance. The drive is 9am to 7pm. We've had coverage for the drive on the Concord Monitor, Laconia Citizen, WMUR News, WKXL and the Hawk Radio stations.
Giovanni is doing good with the acception of the throwing up. The doctors keep telling us it will be fine, but that is little help to us when he starts heaving in the middle of the night and we have a heart attach. Check in tomorrow for the results of the drive.
August 24, 2007
Saving Giovanni +157
No Entry
August 23, 2007
Saving Giovanni +156
No entry
August 22, 2007
Saving Giovanni +155
Grandma watched Giovanni today while mom took the boys to the Boston Museum of Science. He was very good for and gave her lots of smiles. I stopped in for a while during the afternoon to see him and he was sleeping. He woke up before I left and I got him to give me a smile and pet my face, which he loves to do to mom and me. All and all it was a good ay for him, but he did get up several times during the night. No throwing up. A very good day and night.
August 21, 2007
Saving Giovanni +154
Last night was a scary one for Christina and I. Giovanni woke up at about 3:30am and hearing him first I went in to check on him. He had messed his diaper so I changed him. I returned to my room and he started to cry again. I went back and looking down at him he startedto throw up his food--he has an eight hour tube feeding overnight--so I tryed to hold him up so he wouldn't choke. He was crying loudly, Christina came runing in the room, Giovanni threw up more, and was straigtening out his hole body fighting me as I help him. He finally stopped throwing up. I stripped off his blanket and sheet and Christina changed out his wet outfit. It was a scary situation.
Giovanni is still adjusting well to his steriod withdrawal. That is a surprise to us and the doctors, because we were advised by both doctors and others who were on treatment steroids that the withdrawals are hard. Just another example of Giovanni overcoming another obstacle. "That which does not kill us only makes us stronger."
August 20, 2007
Saving Giovanni +153
Giovanni had a much better day. He only threw up once. His breathing is a little raspy, which is being monitored, but his mood was much better. Less crying, less agitation, more smiles. He is adapting well to the removal of the steroids. The kid never stops impressing us. Please join us Saturday at the 25th Anniversary of Heritage Harley Davidson in Concord for a huge bone marrow drive. Live Entertainment, free BBQ, Harley Davidson tent sale. See Heritage Harley Davidson website at
www.heritageh-d.com
August 19, 2007
Saving Giovanni +152
Giovanni is doing the same as yesterday. Throwing us and agitated in the morning, a little more comfortable in the afternoon, and we had no trouble putting him to sleep at night. We are still concerned about his eating, cough, and beathing. If things continue on the same path we may take Giovanni to Dana Farber tomorrow.
August 18, 2007
Saving Giovanni +151
The steroid reduction is having an impact on Giovanni. He is throwing up his food, agitated, and uncomfortable. He won't eat any baby food and his only source of food is the formula from the feeding tube. He is also getting a cough and is hitching when he breaths. We are very concerned and so we called Dana Farber and were told these were the effects of the medication reduction and to just monitor him for fever.
August 17, 2005
Saving Giovanni +150
Giovanni didn't break 15 lbs, he's 14.9 lbs, which is actually a 2oz loss from two weeks ago, but he did grow 5/8 of an inch. His blood work is excellent, and Sunday is his last dose of steriods. Giovanni is having trouble holding down his feeds and, in fact, threw up his entire feed at the hospital. The administration of his Reglan, a drug that helps the body push foods through the intestines, was adjusted so that he gets is 1/2 hour before he eats. The protonics was not discontinued because it also helps with stomach issues.
Giovanni's blood counts were excellent, ANC: 7,360, White blood cells: 10.36, Platelets: 4,230. The doctors are very happy with these numbers and today Giovanni is 150 days post transplant.
August 16, 2007
Saving Giovanni +149
Click here to see Giovanni on
WMUR News. Although the news of canceling our house raffle is unfortunate, everyone can see new pictures of Giovanni giggling and smiling. He looks great. In the morning Christina and I are off to Dana Farber in Boston with Giovanni to see him hit his all time weight and break 15 lbs. Two weeks ago he weighed 14.11lbs. In the moring three of his medications will also be discontinued. Giovanni's transplant is going great. His blood counts are high, his weight is climbing, his eating is not as good as we want, but given the reduction in medications he's lived on for over 8 months its still remarkable.
As you may all be aware, we had to cancel the raffle because we were informed by the NH Attorney Generals Office that its illegal to raffle real estate in NH. We canceled the raffle and returned the money we received for tickets. Its unfortuntate that the solution I thought I had wont work but we will simply have to find another way to pay our debt and fund the foundation. Christina and I still feel we did what a parent should while one's child fights for his life and if the consequences of that mean we may lose our house well so be it. I once read in a book, The Floating Opera by John Barth, "The test of one's principles is there willingness to suffer for them and the test of this willingniess, the only test, is actual suffering." We will continue on our mission to fill the international registry with bone marrow donors both saving lives and helping other parents avoid what we've lived through.
Stay tuned for Giovanni's medical update tomorrow.
August 15, 2007
Saving Giovanni +148
No Entry
August 14, 2007
Saving Giovanni +147
No entry
August 13, 2007
Saving Giovanni +146
Giovanni slept well last night. He had a great day hanging out with his brothers, took a ride with mom to Sears, and returned home to watch his brothers get baths. He loves watching the boys and they love him. He's still vomiting the formula but is now eating more baby food. Friday is a big day. Three meds cut and we hope he breaks 15lbs. He is getting chubby.
August 12, 2007
Saving Giovanni +145
Sunday morning, Giovanni and me at sitting on the couch watcing TV while mom is out food shoping. We both fell off to sleep together. It was beautiful sleeping with baby boy cratled in my arm. He's getting heavy. We all enjoyed the day together.
August 11, 2007
Saving Giovanni +144
No entry
August 10, 2007
Saving Giovanni +143
We were notified today that the editors of People Magazine killed the story about Giovanni. This is very sad for us. The reporter, however, was so upset that he sent the sotry to a friend at Date Line, and they forwarded it to Good Morning America. No calls yet, but we hope its only a matter of time before we get national recognition and spark bone amrrow drives all over the country.
August 9, 2007
Saving Giovanni +142
No Entry
August 8, 2007
Saving Giovanni +141
We've been notified by People Magazine that they want to write a story about Giovanni and the movement. This is great news. National recognition could spur bone marrow drives all over the country and save hundreds of lives, as well as help us sell the raffle tickets for our home. If Giovanni only knew the news he was making.
August 7, 2007
Saving Giovanni +140
Positive post-transplant day 140. We remember day one when we watched him and contemplated all of the possible lethal effects the doctors told us about and how we should expect to be back in the hospital with infections and complications week after week, that death could happen at anytime from a seizure or pnemonia, from an adverse effect. They said it would be harder when we left the hospital.
Dazed after months in the hospital traveling 100 miles from home each day to stay with Giovanni. I remember the dozens of bone marrow drives we held searching for marrow, hoping to find the needle in the haystack with no luck and then the cord blood match that saved Giovanni. It all seems like a bad dream, a nightmare, that lasted for months and we're still feeling the effects, like a jet lag lasting months trying to shake it and at the same time shocked with happiness and disbelief that Giovanni beat the odds, bounced back from every medical challenge he confronted and now he's140 days post transplant.
August 6, 2007
Saving Giovanni +139
No entry
August 5, 2007
Saving Giovanni +138
We all spent today relaxing at the house swimming in the pool and enjoying Giovanni's antics. He is a character. He likes to hank out on the deck swing and watch his brothers swim. He is still throwing up a little, but we are tolf its form the reduction in the steroids.
August 4, 2007
Saving Giovanni +137
Giovanni spent the day with Linda while Mom and I attended the bone marrow drive and motorcycle run at the Gate City Pub in Nashua, NH owned by Kenny Leva a Middlesex County Deputy Sheriff. Giovanni had a great day and we added 17-life saving marrow donors to the registry for a to date total of 8,949.
August 3, 2007
Saving Giovanni +136
Weight: 14.9 lbs
Giovanni went for his bi-weekly exam at Dana Farber's Jimmy Fund Clinic as well as a stop at Childrens to see his GI doctor. The results of these numerous visits were remarkable.
First, Giovanni is 14.9 lbs, a life time record. Two weeks from today his steriod medication will be eliminated, as well as the protonics and fluconazal. The next medication to be withdraw in approximately one month will be the immuno suppresant cyclosporine. After these medications are removed he will have reglan and magnezium sulfate to contend with.
Giovanni's ultrasound was clear, and his GI appointment was equally impressive. Christina got big complements form the doctor on keeping Giovanni's central line from infection, as well as his G-tube. The doctor said the most common infection the kids at home get is a central line or G-tube. He advised Christina to stay on the current diet. No eggs, wheat, milk, soy, dairy products, or foods other than baby food.
Giovanni had an audience waiting on him when he arrived. God mother Elena was the first to arive, followed by Super Aunt Deanna, and then Hanna.
Giovanni is doing great.
August 2, 2007
Saving Giovanni +135
Giovanni didn't sleep so well last night, but it was hot. He only threw up once today, so that's acceptable for a baby. He got to see his favorite visiting nurse Linda today, and they had a great time together. When she first began to visit he lost it when she tried to hold him, but she was persistent and us disciplined when having to leave him crying. She eventually won his heart and him her's and they now get a long wonderfuly.
August 1, 2007
Saving Giovanni +134
Giovanni slept all night and woke up with his usual smile. He's starting to give us a little trouble eating but we are hoping its the weather. He had a visiting nurse today for physical therapy and did well. He's doing great all around considering.