Friday, June 3, 2011

We hope everyone has been enjoying their Spring.

We have been having a great time spending time together as a family and just staying busy with school, sports, and other family activities. Kevin has been back enjoying work and we’ve been doing our best to make the rounds to reconnect with family and friends and look forward to continuing that over the summer.

We had a great response to the Great Strides Cystic Fibrosis walk this year. Although we were planning to celebrate as a team at the event, our family was not able to join due to some additional medical complications that needed to be addressed. Thanks so much to all of you that did attend the walk as well as your financial support of the charity and your continued prayers of support. We hope to celebrate next year as we turn the corner of 2 years in our new post transplant life.

Many of you may be aware that Kevin has been provided with a new challenge to face as part of his journey. In May, the medical team identified a mass in his sinus and behind his eye that had to be surgically removed on short notice. The surgery went well and he is still recovering but planning to return to work next week. After studying the tissue that was removed, it was determined that Kevin has PTLD in his Sinus, Liver, and Colon. PTLD is a form of Lymphoma that transplant patients are susceptible to given the lowering of their immune system and their inability to protect themselves from the virus that causes this type of Cancer.

The prognosis is very positive and the doctors call it a “treatable and curable” disease. We are hanging our hat and our hearts on to that prognosis with a very positive outlook. Kevin has returned to the gym for training as well as started a 12-18 week course of Chemotherapy. In all the transplant cases that we have been exposed to, it appears that most, if not all, lung transplant patients have a “bump in the road” in their first year of transplant and that is exactly how we are viewing this….just another bump in the road. Let’s get past the bump and get on with the living!

Thanks again for all your support and the many ways that you have provided it. It has lifted us up along the way and it always comes at the right time and most of all we appreciate YOU for being part of our lives.


The O’Neill’s

Friday, November 26, 2010

I wanted to give you an update because now I CAN!

At this time of Thanksgiving, we find it fitting to say a final thank you. I can’t begin to tell you what it means to me and my family to have you behind us supporting us every step of this journey. It has been a long and taxing road, but one with a beautiful light at the end of the tunnel which is now in sight. It has meant so much for me to have Beth read me your notes of support and best wishes, this became a very important part of my day over the last six months and one that I looked forward to. So many people chose their own personal way to help whether it was sending along a dinner, a card, helping the girls’ summer be a little more enjoyable and “normal”, the extra support, a hug, or just taking a moment in their day for a quick prayer for our family. All of it helped tremendously!

A special thanks to the entire Transplant and CF Teams at MGH, it certainly takes a village. The CF team took me from being too sick to make it through surgery to a point that the transplant team felt comfortable moving forward. I was moved from floor to floor, unit to unit, and room to room, such that the right level of care was given at the time of need. Every member of the team is truly the best at what they do and I’ve never seen as much passion for someone’s working role in life than when looking into the eyes of the doctors, nurses, aides, special staff members and felt how much they cared. I always had the feeling that I was a special case for them and they went the extra mile, but I know they do that for all their patients. I think Beth is a fully qualified nurse practitioner now given her deep involvement with life changing decisions, medication issues, working through anxious times, getting me out of bed to exercise, attending planning meetings, she was a critical member of the team.

I am enjoying my time with my girls and Beth just sitting around the dinner table enjoying a good laugh, sitting on the sideline of the soccer field or gymnastics gym, or taking my exercise walks with them. Beth is enjoying not having to commute to Boston everyday. Every second we spend together is worth all the effort put into getting well.

I hope I live my life as God has intended because I was given a second chance and not all people are so lucky. I have full faith that God gave us this challenge for a reason. I pray that the donor family is comforted in knowing that they have given life to someone who appreciates the small things in life, like waking up and taking that first breath of a new day. How can you thank someone for that?

There is still plenty of recovery time in front of me, but I get stronger each day and each day invested is building a better tomorrow. I plan to enjoy this gift I have been given…..LIFE.

Have a wonderful holiday season and I hope whatever part you played in this journey, big or small, we are all reminded what a miracle God has given us and maybe it has changed the way you look at life a little bit…..enjoy.

All our Best,
Kevin, Beth, Danielle, and Kathleen

Monday, November 8, 2010

It has been two weeks now since Kevin has been home. It has still been busy trying to get used to “normal” life and making things a routine. He still visits Boston a couple times a week and has nurses and physical therapy at home. The doctors are extremely happy to see him going in the right direction. Although it will take awhile to be fully recovered, he has been getting stronger and more steady each week. We are happy to be able to be a family once again. Kevin has slowly been able to see his extended family as well, which he has not seen in a couple of months. He says more than once a day, “It is so nice to be home.”

Saturday, October 23, 2010

KEVIN IS HOME!!!! A little over six months and he is home. It goes beyond words to even express what we are all feeling. It has been very busy with all the nurses and medicines, etc but that has all become background to just our family being together. We are diving into this new life now and just picking up some of those lost pieces and moving forward. We will be in touch soon.

Thursday, October 21, 2010

Kevin has recently had his trach and feeding tube out. So he officially has nothing medical stuck to his body anymore. He is probably going to be discharged soon. We will keep you posted.

Saturday, October 16, 2010

Kevin has had the best week in a very long time. No longer has his cane and walking steady and sure, passed his balance test so less risk of falling, has gained 9 pounds, took his first shower yesterday. He has definitely been feeling more himself and realizing how much has gone on. He took a flight of stairs trying to get him ready to come home and his lungs stayed at 100%. All he complained about was how his calves hurt:) Physical therapy has been great dealing with his post surgery issues and helping some of his stiffness from all the healing. The girls have had a different kind of energy now and a good feeling of happiness finally. Hopefully working towards home soon.

Monday, October 11, 2010

Kevin was transferred to rehab last week. He’s feeling much better, getting stronger, walking longer and gained 4 lbs! Things are definitely headed in the right direction. We will keep you posted as things progress.

Monday, October 4, 2010

Kevin is getting better by the day and they will be transferring him to a rehabilitation hospital in Boston this week….YEAH! Kevin just has to build his muscles and then he will be coming HOME! We are very excited and we will keep you posted as the week goes on and he is transferred.

Thursday, September 23rd

This week is alot of the same news again. He does have a pretty bad sore on his lower back that they had to clean up and has been very painful to him. So he did have a couple of days that were not so good. He is now back to himself again and doing more laps again around the floor. He has had more of an appetite too. So still trying to make sure all medically is good but he is getting stronger again.

Tuesday, September 14, 2010

No new news. Kevin is doing well in his recovery and rehab. He’s doing laps around the floor now, where just weeks ago it was a struggle to just walk around once. They removed his feeding tube last night, so he will be getting all his nutrition from the food he eats.

He is definitely headed in the right direction and we hope he continues on this path.

We will keep you posted.