Thursday, February 18, 2010

Liver Biopy Update and Benefit Update

Hi everyone,
Sorry it's taken a while to update. Alison's liver biopsy revealed that she had cholestasis, which is pretty nonspecific and could have been minor to quite serious. Thank God, it appears to be minor. We firmly believe that this was caused by the crohn's medication that Alison's gastroenterologist insisted she start taking again. It was after her first injection since the transplant, that we saw the ill effects. Needless to say, she will not take this medication again. It appears that the medication has not had long term effects, as Alison's liver enzymes have now come down to almost normal-she got this news yesterday, along with the news that her pleural effusions are gone. We are so very relieved-Alison is so happy. Alison does now have a cold-we were pretty concerned as we did not know how her body would be able to fight this. So far, she seems to be doing well and we found an over the counter cold medication that is safe for her to take and seems to be helping.

Alison's big focus these days is classes and appears to be "itching" to get back to activities. It's been pretty challenging to be so restricted-she has not been able to go to malls, restaurants or any activities that involved numbers of people-a tough order with college and sorority activities everywhere. Hopefully, once the flu season is over, the restrictions will lighten a bit. Another focus, of course, is the ALI'S ANGELS BENEFIT CONCERT. If you have not done so already, please purchase your tickets ASAP. It is sure to be a wonderful evening to honor Alison and John--and raise money to benefit families of individuals facing a liver transplant and donor families. We have already learned of a young family with a 3 month old who is facing a transplant and can use our help-please support this important fundraiser.

Hope all is well with everyone out there.
Joe and Karen

Wednesday, February 10, 2010

Unofficial results of liver biopsy

We received information that there does seem to be a cause for Alison's elevated liver enzymes. We are presently not sure if it is anything serious or not. Please continue to pray that the official results will indicate that the elevated enzymes will be easily reversed.
As always,
Joe and Karen


Dear family and friends,

individuals did not realize that tickets are by reservation and not just general
seating. We have also been told that Benefit Concerts run by the Performing
Arts Center in the past have sold out. So, if you have not reserved your
ticket(s) for the ALI’S ANGELS BENEFIT CONCERT in honor of Alison and her donor,
John, we encourage you to do so AS SOON AS POSSIBLE.

Just to remind you of the details; the concert is scheduled for Saturday,
February 27th and will take place at 7:30 p.m. at the Edgerton Center for the
Performing Arts at Sacred Heart University (SHU). Tickets are on sale for $20
and available through the SHU Box Office, 203-371-7908, Monday through Friday,
12-4 p.m.

DONATIONS can also be made to the event. Please see the attached Event
Sponsorship Form. Please make donation checks out to Yale-New Haven Children's
Hospital, be sure to note ALI'S ANGELS FUND on donation checks. Checks can be sent to The Performing Arts Center of CT, 18 Lindeman Drive, Trumbull, CT 06611.

All proceeds will go into a special Ali’s Angels fund at Yale New Haven
Children’s Hospital for families of children and adults facing a liver
transplant and donor families to help cover costs incurred throughout the
transplant and donor processes.

This concert promises an evening to remember- uplifting, heartwarming and fun.
So, come out to celebrate with Alison, John and our families.

We look forward to seeing you on February 27th.

Joe and Karen

Friday, February 5, 2010

Liver Biopsy Today

Friday, 6:30 p.m.

Alison had a liver biopsy today. Her liver enzymes have been high for the past several weeks and the doctors decided yesterday that it was necessary to see what is going on. After a very long afternoon of waiting, Alison finally went in for the procedure, she did well but is now very uncomfortable. We will be here for the next couple of hours as she needs to be watched for potential bleeding, etc.

Overall, Alison has been doing well over the past several weeks, some difficulties with her stomach but she start taking a few courses back at Sacred Heart. She also moved in to the house with her roommates and sister. Hopefully, things are moving in the right direction and this biopsy will not reveal anything too concerning. Please pray that she will have a smooth recovery and that whatever is causing her liver enzymes to be elevated will be easily rectified.

Hope all is well with everyone. Don't forget to call for your tickets to the Ali's Angels Benefit Concert. Ticket are going fast and it is reserved seating. From what we hear, benefit concerts like this one have sold out in the past. There was an article in the Trumbull Times yesterday about John's amazing gift to Alison as well as the Benefit. It was similar to the article in the Fairfield Citizen that have been posted on the blog-we are very happy about the publications as they provide opportunities to acknowledge John's wonderful act of giving, educate the public about organ donation and inform people about the benefit.

Have a good weekend,
Karen and Joe

Sunday, January 24, 2010

Fairfield Citizen Publication

Below is a copy of a recent article in the Fairfield Citizen sharing information about Alison and John's story as well as the upcoming concert.

'Angel' saves Sacred Heart University student's life
By Karen Kovacs Dydzuhn
Published: 01:06 a.m., Friday, January 22, 2010
Excerpt from the Fairfield Citizen
With a glowing complexion and infectious smile, it's hard to believe that Alison Cubbellotti, 20, has battled a rare liver disease called primary sclerosing cholangitis (PSC) and Crohn's Disease for nine years.
Despite an inner resilience and deep desire to continue nursing studies at Sacred Heart University (SHU), Alison's rapidly failing health forced her to withdraw from classes last year.
"My liver was failing and I was to the point where I couldn't get out of bed, I couldn't focus," Alison explained.
She desperately needed a liver transplant to survive, but the one family member who was a perfect match -- her brother, Stephen -- was eliminated last spring. During the transplant operation, Dr. Sukru Emre, a Yale New Haven Hospital surgeon, determined that Stephen's own liver could be at risk, so the procedure was discontinued. The Cubbellotti family was frustrated and frightened as Alison's liver continued to decline during the following months. They worried that her liver would completely shut down before a donor could be found.
In desperation, they sent out a viral e-mail blast pleading for potential donors to contact the hospital for a screening.
Their prayers were answered when a match was found. Although the anonymous donor, whom the Cubbellotti family refers to as their "angel," had never met Alison, he was a fellow SHU student. John, the donor, would never again be a stranger to the Cubbellotti family.
Next month several other anonymous "angels" from the Performing Arts Center of Connecticut (PACC) will also lend their support in a benefit concert.
The performance will take place on Saturday, Feb. 27, at SHU's Edgerton Center for the Arts at 7:30 p.m. Tickets are $20 and reservations can be made by calling the Box Office at (203) 372-2787.
"We wanted to do something to help," said Catherine E. LaChioma, executive director at PACC. Her daughter, Nikole, artistic director of the Trumbull Arts School and founder of the Parker Project dance troupe, has been "best friends" with Stephen and close to the Cubbellotti family for several years.
In addition, both Stephen and Alison had been enrolled in PACC classes and showcases.
"We decided to do the only thing we know how to do -- put together a benefit concert and raise some money and awareness for liver disease," said LaChioma.
At the helm of PACC, LaChioma has used her studio to support several local and national organizations, including those that benefit AIDS research and awareness. She strongly believes in teaching her students not just about the fundamentals of singing, acting and dancing, but also the importance of using their talents to benefit the community.
LaChioma and her students are now looking forward to supporting Alison, John and their families.
"All of our talented singers and dancers are excited to donate their time and energy to this wonderful cause," LaChioma said.
Nikole and Stephen will dedicate a special vocal and piano selection to John and Alison. Hopefully, LaChioma said, Alison will perform a song, too.
The concert will also include a special appearance by PACC's newly founded Show Choir and a performance by the Parker Project dance troupe, led by LaChioma.
All proceeds from the PACC benefit concert will be put into a special fund at Yale Hospital for liver transplant donors and recipients.
"There are so many expenses that you don't expect, but which add up, such as parking and food," Alison explained. "The donor and their families are already giving so much. We don't feel that they should also incur these additional expenses."
John's hospital stay was actually much longer than anticipated because he endured several serious complications following the transplant surgery.
Not wanting people to be discouraged from becoming a donor, John and his mother, Doreen, pointed out that his medical issues were unusual and tend to occur in only one percent of the cases.
"It's so important for people to realize, too, that people of all ages and all backgrounds could get liver disease," said Karen Cubbellotti, Alison's mother. "There is a stigma attached to liver disease with many people associating it with alcoholics and drug addicts."
This is, of course, not true. After all, Alison was diagnosed with the chronic illness when she was only 11 and realized over the past couple of years that the only lasting cure would be a liver transplant. Unfortunately, there are not nearly enough donors available for all of the needed transplant recipients, added Cubbellotti.
Coincidentally, Doreen's brother also suffered from liver disease. Unfortunately, he died from liver failure at the age of 16 because no liver transplant donors could be found.
Following the Cubbellotti's e-mail blitz, which was forwarded throughout the Sacred Heart campus, the Yale New Haven telephone lines were flooded with interested donors. After brief verbal screenings, some potential candidates underwent medical tests to determine their eligibility.
John recalls initially seeing the e-mail on his computer sometime in August, while he was still residing at his family's home in Somers, N.Y.
"I felt for this person," he said. "I knew that this was serious and, for some reason, I couldn't delete the e-mail. I finally worked up the courage to call in September and left a message."
At the end of September, he drove to New Haven for tests which included blood work, a CTScan and interviews with a social worker and psychologist.
It wasn't until John discovered that he was a match and wanted to move forward with the transplant that he talked openly with his family. Although they were obviously concerned about his well being, they also had a great deal of compassion for Alison and her family.
"I was definitely understanding about Karen's feelings," Doreen noted. "I remember how disappointed my mother was that a donor had not been found in time for my brother."
In Alison's case, too, the timing was critical. John hoped to have the surgery take place during the college's winter break. However, Alison couldn't wait that long.
The transplant took place on Oct. 19, 2009, and both John and Alison spent the next month in and out of the hospital as they dealt with various medical complications.
Since Thanksgiving, though, John's recovery has been slow but steady. Because he missed a month of classes, he has had to work hard to catch up.
John has been reassured by SHU's president, Dr. Anthony Cernera, that he would be able to make up his work and graduate with his classmates this May.
The two families could not say enough positive things about Sacred Heart's top administrator.
"He has been so supportive," said Cubbellotti.
The two mothers appreciated Cernera's visiting John and Alison during their hospital stay.
Also, when Cernera first learned about the pending liver transplant early in the academic school year, he called John into his office.
"He asked me why I was doing this," John recounted. "I told him that my parents always taught me to do what was right."
As he re-read the e-mail, John said that he "kept putting myself in their shoes."
"I kept thinking about how I would feel if this was my little sister," he explained.
Like John, Alison continues to grow stronger each day. As she reflects back on the outpouring of love and compassion from the community, and especially John, she understandably becomes emotional.
"At first, it was really hard because I was still recuperating and in a lot of pain," Alison explained. "Now, I can understand and be so thankful for what John has done for me."
In the past couple of months, the two families have become close.
Cubbellotti said, "It's going to be a long road for Alison, but there is no doubt that she is here today because of John."

Ali's Angels Benefit Concert

A Quick Update
Alison has done well over the past couple of days. Doctors are watching her bloodwork very closely as there are a couple of areas that require onging, critical assessment. Please continue to pray that she feels well as she starts back to school on a very part-time basis.

It is with great pleasure that we invite you to a very special Benefit Concert. As you know, Alison received her liver transplant on October 19th and although she has faced many obstacles, continues to get stronger and stronger every day. Alison is alive today because of the selfless and genuine act of giving from an amazing young man named John who became Alison’s living donor “angel”. We have much to celebrate.
So, please join us and John’s family on Saturday, February 27th at the ALI’S
ANGELS BENEFIT CONCERT in honor of Alison and John. The event will take place
at 7:30 p.m. at the Edgerton Center for the Performing Arts at Sacred Heart
University (SHU). Tickets are on sale for $20 and available through the SHU
Box Office, 203-371-7908, Monday through Friday, 12-4 p.m. All proceeds will
go into a special Ali’s Angels fund at Yale New Haven Children’s Hospital for
families of children and adults facing a liver transplant and donor families to
help cover extraneous costs incurred throughout the transplant and donor
We are very excited about the event and grateful to Cathi Lachioma, Executive
Director of the Performing Arts Center of Connecticut for spearheading the
Benefit Concert. The evening’s entertainment will be jammed pack with song and
dance from SHU students, In Motion Dance, a special guest appearance by Karla
Garcia a recent top ten finalist on last season’s “So You Think You Can Dance”
and a member of the “Boogie Bots” from America’s Top Dance Crew. Alison’s
brother, Stephen and Nikole Lacchioma, artistic director of the Trumbull Arts
School and founder of the Parker Project dance troupe will dedicate a special
vocal and piano selection to John and Alison.
This concert promises an evening to remember- uplifting, heartwarming and fun.
So, come out to celebrate with Alison, John and our families and support a great
cause which will aid donor families and other families at Yale New Haven
Children’s Hospital facing the day to day challenges of liver disease who pray
that they, too, will someday have much to celebrate.
Please feel free to invite your family and friends, so they too, can
join us in celebrating the miracle of life.
We look forward to seeing you on February 27th.
Joe and Karen

Thursday, January 21, 2010

Home again!

Alison was discharged from the hospital today. Dad is not feeling well today, let's hope that his illness is short-lived. We really need to work at getting everyone in the house healthy at the same time. Although pretty tired, Alison wanted to go straight from the hospital to Sacred Heart. She is determined to start a few classes this semester. We met with the nursing department and it looks like she will begin classes-she is just amazing-as is Dr. Fries and many others in the department-they have been so supportive. It was very moving to see the light in Alison's eyes as she looked around campus. She really cannot wait to get back to school. Alison also wanted to stop by to see Dr. Cernera, SHU President. He was in a meeting but as soon as his secretary told him that Alison had stopped by, he immediately came to his office. He is just such a terrific man. We had a wonderful visit. He had a gift for Alison-it was a picture from Dr. Cernera's recent visit with the Pope. This is such a special gift as Dr. Cernera shared Alison and John's story with his Holiness-Alison will treasure this picture always. Alison then wanted to stop at the house where she will be living with her rommates-mom was a bit hesitant but agreed as we know how important it is for her to be with her friends. Pleae pray that Alison is able to stay on the road to recovery and have a successful start back to school.
as always,
Joe and Karen

Wednesday, January 20, 2010

It looks like she is on the road to recovery

Alison had a tough day yesterday but today her liver enzymes have started to come down. So, it appears that a liver biopsy will not be necessary-yeah! The doctor also let Alison eat today and so far, so good. If she continues to do well with eating, the doctors may let her go home tomorrow. We are still questioning if this episode was caused by the crohn's medication that her gastroenterologist determined she should start again last Monday. This was certainly the "call" that dad made right from the beginning. Further questions need to be answered and some changes made. Pleae pray that she continues to recover and will be home tomorrow.
Joe and Karen

Tuesday, January 19, 2010

Back in the hospital

As mentioned in the previous posting, Alison has not been feeling well. She was admitted to the hospital yesterday. We are not sure on the specifics of what is happening yet. We will update when we have more information. Please pray that God will guide the doctors in the development of an appropriate plan of action and that He continues to give Alison physical and emotional strength.
Joe and Karen

Sunday, January 17, 2010

Long Overdue Update

Sunday, 12 noon

The past couple of weeks have been wonderful up until this past Wednesday. Alison was able to spend time with friends and family-we were able to spend time with friends and family. A glimpse of a "normal" life had begun to return. Doctor's visits had all been quite positive, some adjusting with medications but overall very positive. Mom returned to work this past Monday and dad started his leave from work to take the lead in overseeing Alison's medical care. It was tough for mom to "leave" Alison but knew she was leaving her in good hands. Alison actually felt that she was at a point where she would be fine on her own, but mom and dad were lagging a bit behind her on that idea. Unfortunately, Alison started to not feel well this past Wednesday. She feels it is her Crohn's Disease rearing its "ugly head". We have been in contact with the doctors and adjusting her steroids and pain medications. She has been able to get a little relief for brief periods but overall has been in considerable pain. Please pray that her pain subsides and that this doesn't advance into anything more serious.

Although she was not feeling well, Alison really wanted to go forth with our holiday "get together" with John and his family. She rested most of the day yesterday and was finally able to join us for part of the evening. Despite, feeling sad that Alison couldn't fully participate in the evening, it was wonderful to have our families spend time together. We were finally able to meet Aunt Rose, she is very special to John's family and we could immediately see why-for us, again another, immediate connection-what a lovely woman-we are thrilled to now have Aunt Rose in our family. We truly feel blessed that God brought John's family into our lives and can't wait until our next opportunity to connect-hopefully, with Alison in "full force".

Well, both John and Alison are hoping to start classes on Tuesday. John has been busy making up all that he missed last semester. We know this has been a lot of work for him over his break. He, of course, has not complained but we want him to know that we are aware of and appreciate how challenging this must have been during a time when many college students are able to "take a break". Alison is planning to take one on-line course and a nursing course. Hopefully, we can get this current health challenge under control and she can begin to return to pursuing the nursing career that she is so committed to.

We hope that everyone's start to the new year has been healthy and enjoyable and that you have been able to prioritize time with the important people in your life.

Joe and Karen

Saturday, January 2, 2010

Happy New Year

It's been an enjoyable couple of days for Alison. Her follow up appointment at Yale on Wednesday went pretty well. Doctors are closely watching her blood pressure, fluid build up and liver enzymes but things are good overall. Alison has been able to spend time with friends, which has been long overdue-she had an enjoyable New Year's Eve. Dad a "mishap" early on New Year's Eve-he fell while snowblowing the driveway. He is a bit bruised but was very lucky that he did not get seriously hurt. Mom has been sick, went to the doctor yesterday-is now on meds-hopefully they'll start to "kick in" soon. Mom is very concerned about being around Alison-please pray that Alison does not get sick. Unfortunately, we just decided that we will have to postpone our "get together" with John's family-we are all very disappointed as we were all looking forward to seeing each other to celebrate the holidays and the start to a beautiful new year. We have rescheduled and hope that everyone will be well by then and that the weather will cooperate.

Well, we wish you a very happy new year filled with much health,love and happiness.

Joe and Karen