A Smiling Earth and New Traditions

Having a rough Saoirse day. This time last year I was waiting for my daughter to be cremated. I feel for all of those parents in CT.

On the 13th, the anniversary of Saoirse's death, we decided to make some new traditions. We started with waking up crying. I didn't sleep very well and neither did Kezia. All of the moments of exactly one year prior were flooding my mind and I couldn't shake them.

We decided to go put the solar lights on the dedicated tree for Saoirse at Endicott Park. We walked with Fallon, its not too far from our house. It was a beautiful day, very sunny. Its felt as if the earth was smiling. We definitely felt Saoirse's presence with us. We walked back home and I put up lights on the house. I was actually excited about doing that. For the past year, I have been dreading the holidays. Just dreading them. I was against the tree and didn't want to put the lights on the house. However, the closer to the holidays it got, the more I allowed myself to feel for the holidays and get excited for the tree and the lights. It is extremely difficult. But I decided a log time ago that I am choosing to stand up and do positive things and make something good out of a sad tragedy. Kezia's family came over that night and we decorated our tree. So overall, it was a good day. It just sent a ping of emotions through me just to say that. Its just still so raw.

Deep breath

Here are a few pictures and a video

Moments frozen in time

Its been a very surreal week. I just don't know how else to describe it.


I kept waking up last night. Each time my first thought was "how is Saoirse". Then I started thinking about what I was doing at that exact moment last year.

Deep breath.

I just can't write anymore right now.

I will write later

Auction to raise money for families battling Neuroblastoma

Keizia is having an auction to raise money for her foundation.

All proceeds raised from the auction will go towards Fitzgerald Cancer Fund's Parent Grant Program to financially help families battling Neuroblastoma.

There is some fun stuff on list. Please pass this link along to your friends and family, who knows maybe there is something on the list they have been looking for :)

Here is the link

http://www.32auctions.com/organizations/5634/auctions/6393



Thank you..

The holidays have been tough and I appreciate everyones feedback. You are all wonderful

Colorful Lights and an anniversary

How do I prepare myself for the 1 year anniversary of my daughters death?

First of all, I have to allow myself to look forward to christmas. Meaning - decorations.
Most of the past year I have maintained I will not decorate, turn on the colorful lights on the house or put up a tree. I thought it would just be to difficult. But after much consideration, talking with Kezia about it and reading others' posts from the past I think it would be a great idea to put up a tree. Saoirse would have loved it. Plus I strongly feel her presence in the house, so I think her spirit will be sad if we don't decorate. She loved the colorful lights. I also feel that by not decorating I will be avoiding feelings that I need to embrace.

I miss her so much. Thanksgiving was tough, it was the last major "first" holiday without her. She died right before christmas last year so christmas was the first major holiday without her. But last year, right about this time of year Saoirse started getting really sick. Life was a blur for me. My entire focus was Saoirse and getting her well and dealing with strong conflicting feelings that I knew in the depths of my soul that she was dying. I don't really remember christmas last year.

Kezia and I have been talking lately about what we are going to do for the anniversary. We just don't know. Maybe let off a couple of lanterns? Go to dinner somewhere? Go somewhere special and spread some of her ashes?

See, our feelings don't go away until the 13th every month. The 13th is everyday for us.

I talk to her every day, as if I am telling her a story about our life. It is a weird thing. Its like we are sitting on the porch or yard and I am telling her about our life. Hard to explain right now.

Deep breath

I just miss her so much and wish I could hold her one more time.

Deep breath

Cancer is Pain. Period.

Its been difficult starting our business. We attended our first conference last weekend in Dallas and it was a huge success. We retrieved 90 leads from nurses and nurse managers all over the US. They all loved our products and want samples for trial. It was overwhelming. Our booth was constantly packed with people. Although it was overwhelming, it was fun and we enjoyed meeting everyone as well as the feedback we received regarding our products. The difficult part was knowing our products were developed while our daughter was sick. I wish I didn't have this product, I would trade it all to have Saoirse back. I would trade it all to have her not had been sick.


There is no comparable feeling than to watch your child suffer.

There is no comparable feeling than watching your child die.

Cancer in children is a horrible thing. Its evil. Its unforgiving. Its ridged. Its smart.

Cancer doesn't consider feelings or thoughts.

Cancer doesn't care about pain.

Cancer is Pain. Period.

Deep breath.


We are going to help others with our products. Kezia is going to help others with her foundation. Its a choice to do this. We can sit and fall into our sorrow or we can embrace it and keep our heads high. We didn't teach Saoirse to fall into her sorrow, we encouraged and built encouragement and love. That is us, it has to be.


Deep breath.

I do not want the holidays to come

The past few weeks has been difficult. Usually I am excited about the holidays. I love decorating and getting the tree. This year not so much. Actually, I am not excited about it at all. I do not want the holidays to be here at all. Halloween was horrible. I really missed the excitement of what we would design for a costume for Saoirse. I know it was difficult on Kezia too. We just didn't seem very excited.

Deep Breath

I am not sure I want an xmas tree this year either. I guess I just feel overwhelmed that it has almost been a year. I miss holding her. I miss her learning and smiling and being excited about things she discovers. I miss her playing with Fallon. I feel her presence here in the house too. Its just so surreal.

There are some things that I can't/won't put away yet.


Folded clothes I put on my dresser about a week before she died as well as her sweater and toothbrush

Folded clothes and one of her clothes hangers and a bag of snacks. I put these there on my bedroom radiator the day before we took her to the hospital last year

Her changing table. Nothing has changed yet. her shoes are still there as if they are waiting for her feet.

No One to call me Daddy

The past few days has been difficult. Actually the last few weeks. I miss Saoirse. I miss her voice, her smile, her laugh. I miss playing with her on the floor with all of her toys.

I like Kezia's post yesterday. I will mirror it in a way. No one to call me daddy.

quiet

When I walk into the house I still expect to hear her laugh.
When I walk into the living room I still expect to see her playing or tormenting Fallon.
Its so quiet in the house.


Deep Breaths.

New York City and OCC

The last think I heard Saoirse say was "Elmo". So I decide that Saoirse's Elmo will travel with us everywhere we go. She also loved Curious George. It was easier to put Curious George's shirt on Elmo. Here are some shots from our recent visit to NYC

Some of the "1st's" hit when least expected

Our life is busy right now. This is great because will be launching our business, CareAline Products. We are excited about it because a lot of people will be free of the chaos of figuring out how to keep PICC and Central Lines secure with out using tape.

Last week we went into Boston. My nephew Andrew is visiting us and we went into Fanuel Hall. The last time we were there was back in November 2011. I received the call that Saoirse's cancer came back aggressively. I just stood there and cried. We knew the statistics of kids who relapse with Neuroblastoma. My stomach sunk. I know Kezia's stomach sank. So the other day was the first time I had been back. That one snuck up on me.

I miss her so much.

I just want her to come home.

It has been a rough couple of weeks. I am not sure if my system is preparing me for the upcoming months.

Tonight my nephew and Kezia and watching How I Met your Mother. It is the episode where Marshals dad dies and the story is focused on Marshals dad's last words. I had to go upstairs and eat. I just cant watch that episode for a while.

Saoirse's last words to me were "elmo". It was just the night before she died. I put on Elmo on the iPad so she could watch it. She saw the show come on and pointed and mumbled "elmo". She was so swollen she could barely talk. But she mustered up enough energy to say "elmo".

For the past few weeks that moment has been playing over and over in my head. I am trying hard to shake those last hours. I am trying hard to not think about her face, how swollen it was. I am trying hard not to think about all the noises in the ICU as they were doing CPR. I am trying not to think about seeing her little body thrust up and down as they were performing CPR. I just cant bear to her her moaning from pain just before the doctor verbally ordered more sedation.

Deep Breath....

I just want her to come home.

I cant sleep at night. I wake up about every hour. Much like I did when she was in the hospital. I wanted to stay up 24 hours in case she needed me. Its just what a father does for his child.

How does a father deal with the death of his child. How does a father deal with watching his child suffer? How does a father deal with watching his child die.

I have tried walking in the evening hoping it would tire me out enough. I think about happy times all the time hoping it will take away the nightmare images of my daughter dying.

Deep Breath...

I just want to sleep. I want some rest. I have to finish this business plan for our business and I am so stuck. Well, not really stuck because I just need to tighten up loose ends and wait for the quote from our manufacturer.

I am just exhausted. I do not want October to come. I do not want November to come. I do not want December to come.

I did everything I could. And then she died.

Deep breath.

I just want her to come home.

Our New Business Please visit

Hi

Its been a while since I posted. I have been pretty busy working to get our business off the ground. We are getting further along. Please visit the website of our new and upcoming business for infants, children, teens and adults who need PICC or Central Lines in the Chest.

carealine.com

Facebook:  http://www.facebook.com/CareAlineProducts

Thank you. I have many things to write about and will soon I promise. I miss Saoirse so bad. There are many milestones we have to face in the next few months. I am prepping for that.

Mike

Dreams

My dreams have been potent. I am having terrible night mares. Most nights I just don't want to go to sleep for fear of my dreams. My dreams are about Saoirse. Sometimes they are of her dying and sometimes they are about her being gone and I am frantically trying to find her because she needs her medicine. Other times I am in a dark space and I am yelling "Saoirse". Other times there is a guy in a white coat (its a doctor, the doctor who I saw sticking needles in her chest when she was being intubated). He is holding her and walking away. I try to run after them but I just can't catch up. I can see Saoirse looking back at me crying. I had that dream the other night, waking up trying to catch my breath. 

I was talking with people earlier this week about dreams. Now, sometimes I have good and enduring dreams. I have only had 2 or 3 dreams that I can remember of Saoirse where I woke up feeling good. I believe she visits me in my dreams when that happens. I believe she visits me all the time around the house and yard. I sense she is here. 

All in all, I am staying motivated and grounded. I am assured by other parents who have lost a child to cancer - actually who has lost a child, that I am not crazy. 

I miss Saoirse. I just wish I could hold her one more time. 

Deep breath. 

Waking up is hard to do sometimes

My 1st thought this morning when I woke up was "I hope Saoirse didn't have much pain". My 1st vision when I woke up this morning was of Saoirse dying.

My day has been shit.

Deep breath.

Summer

Summer is proving difficult. Last summer, when we were not in Childrens Hospital Boston we were trying to find fun free things to take Saoirse to. We were mostly in the Hospital, which I may add the hospital and staff did a great job helping us out while we were in there. When saoirse could, we would take her down to the grass area outside the hospital. She loved it. When we were home, we were outside and out and about. If we even mentioned that we were going outside, Saoirse would run over to her shoes and pick them up and then go to the door. She was so funny. She loved being outside and playing. She was such an explorer. We wanted to expose her to as many experiences as we could. We found free art walks (which she loved), food festivals, concerts. She loved it all. She also loved playing with all of her friends. She loved them so much.

We are finding ourselves stuck.. ?? not sure if that is the right word. When ever we go somewhere, there are reminders of Saoirse. We find ourselves wishing that Saoirse was with us and we are often saying to each other "Saoirse would have loved this". Kezia has been having a difficult time too.

Its just not fair. She deserved to have a life. She seemed to make the best of her life, and in a way, she had a full life.

Sometimes Kezia and I will get up and not do a thing. Its just to hard. The closer it gets to December, the harder it gets and the more I want time to slow down or stop. But it never fails. The weeks are flying by. If it is 6am, its like the blink of an eye it is 6pm.

I have been avoiding watching videos of her. I feel guilty about that sometimes, but its just so difficult sometimes. I hear her voice every day. I see her face every day in my minds eye. When I just don't feel like doing anything, I picture her coming and grabbing my hand and saying "lets go". She motivates me and I hope that never goes away.

We went canoeing the other day. The last time we went, we took Saoirse. She loved it. She loved being on the water and was fascinated by the fact she was in a boat on the water. It was such a pleasure to see her experience life. It was difficult to go, because I kept thinking about her. I kept wishing she was with us. I forced myself to go though, because to be honest, she would have not approved if I didn't go. :)

I had to face that head on and it was wonderful. Sure, I missed her and had a lot of visions from when we went last year. I wished she was there. She was in spirit.

Again.. my daughter has enforced a valuable lesson - When you feel like giving up or not doing something, just go do it. It feels better and life is more full.

Saoirse was such a wonderful little person. And I miss her so much.

Ebb and Flow

All I have to say today is that I miss Saoirse. It comes in heavy waves sometimes. I have cried frequently over the past couple of days because I just can't get the day of her death out of my mind. That day comes in waves too. I miss he so much. Kezia is having a difficult time too. People who have lost their child to Neuroblastoma, or any other childhood cancer,  have told me this is normal. The ebb and flow of the emotions and thoughts. I just wish I could have held her and comforted her when she was dying. What did she see? Was she thinking about anything? Was she in any pain? No-one has these answers.

Yesterday I walked out into the back yard and noticed that her outdoor toys had grass all over them from when I cut the grass. For a split second I thought "I better hose those off so Saoirse can play on them". Then the brick wall hit me. These little moments, yet large hit me all of the time. They come so fast that it just hits me in the heart. This I am told is "normal" too.

Saoirse was so awesome.

Fathers Day and Lessons from my Daughter

I have been having a difficult time lately. Fathers day was horrible for me. I do not know what I was thinking when I suggested that Kezia and the board launch the organization on Fathers day weekend. I was there to support my family and friends and to help Kezia. I tried hard to put on a tough face and figured that I would just deal with Fathers day by doing something good. Didn't quite work that way.

Deep breath.

I miss her every day. Fathers day seemed to heighten that. We spent the first half of the day driving to NYC. My mind wasn't clear and nothing was going the way that "I" expected. (things went fine and worked out even better, but of course when I am in that funk my perception is way off)

I couldn't shake Saoirse's last day, and how I felt I let her down. I still feel that way. I saw dads with their kids wearing the fun Dads Day T-shirts worn by both dad and kids.

I wore my shirt, the only Dads Day shirt I have. "Father Moe's Best" by "Life Is Good". It has a picture of a dad mowing the lawn. I love mowing my lawn. I love wearing it. I wear it a lot actually and have to stop because it will get worn out. I can't find another one so I will just wear it a few times a year I think. Saoirse loved that shirt because its so soft. It was gentle on her cheek and head when she had to lay on my shoulder when I held her. I miss holding her. I am so sad. I miss her so much.

I had a breakdown in NYC on Fathers Day, Sunday night. I just couldn't take it anymore. I cried and cried. Before I cried I was blaming other people for my false expectations and pushing people away. All I wanted to do was spend time with Saoirse. "why me?", "why did she have to die?", "why couldn't I save her?", etc.

I really tried to just smile at other dads, thinking of last year and the wonderful time we had while playing "Put Put".


But the pressure just kept building. I felt completely out of control. Kezia and Paul went to Jessica's hotel room because I asked to be alone. Then I cried. And I cried. Then cried some more. Tears trickled most of the day, but it was at night when it all came out. I didn't think I was going to stop. Here I was overlooking Times Square, NYC and I couldn't help but think.."the last time I saw this place Saoirse was with us". Once I cried and came to my senses, my mind was clearer. I leveled out and realized how much of a putz I had been with my wife and friends. We all had a great talk and I was able to just talk and get it all out.

Then lessons from my daughter came flooding to me. Saoirse always tried to smile and seemed to not let things take her away from living life. Her cancer didn't stop her. It accelerated her. After I cried and got back in touch with my feelings rationally, I couldn't help but feel she was there pushing me to be balanced and to make the best of it. She pushed me to realize that life is short and I have to keep moving forward and staying positive.


I miss her so much. It has been over 6 months and still seems so surreal and like it just happened yesterday. We go to a group a couple of times a month for parents who lost a child (of all sorts of reasons) and the group has been very helpful. Most parents in the group's also feel like it "just happened yesterday".


I have so much more to write about tomorrow.

Fathers Day

Its Fathers day weekend.

Deep Breath.

It took every bit of energy and positive self talk motivation to get myself out of bed for the past few days.

Today was worse. I just didn't want to get out of bed. I wanted to stay asleep.


I miss Saoirse so much.


Deep Breath.

Pain and Blinders

With a week away from the launch of the Foundation, the stress is lessoning a bit. I have very little to do with the foundation because as Kezia launches the foundation we are simultaneously launching a business, which I devote most of my time to. (can't wait to tell you about it - soon. I promise)

The foundation has a wonderful and dedicated Board of Directors who have worked tirelessly to put it all together correctly and legally. They are all so wonderful.

Moving on.

We had a celebration of life party for Saoirse this past Saturday. It was such a great day. We have some awesome friends.  We wanted to have a party because that is what Saoirse would have loved. I miss her so much. I almost called it off a few weeks ago. But glad I did not.

Fathers day is coming up and I believe it is effecting me more than I was willing to admit. For a while now I have been so focused on the business, the launch and just the fact that Saoirse died that I have been blind and not paying attention to people around me. I have been cranky lately as well. Just not fair to my partner Kezia. She is such a wonderful person and I wish that her Baby didn't die. She misses her so much and I don't have a way to bring Saoirse back. I don't have a way to stop the pain. I so wish I did.

Deep breath....

I still have a lot of moments where I still think she is here. I will be outside in the garage or garden and look up to her room and for a split second I wonder "is she going to come wave to me through the window?" or "I better finish up, she will be awake soon". These thoughts, these strong feelings of her being here still occur. It happens all of the time. They are lessoning, and it seems that my thoughts are starting to flip from the day she died and all of the suffering, to the great times, times she felt good. Hearing her voice in my minds eye. She was so "as a matter of fact" when she spoke. She was so strong and full of life. She was just a baby loving to learn new things. Oh how she loved to learn. Reading was her favorite. She would go grab her favorite book - "Curious George - A Treasury of". This is a big heavy hard back book. She would bring it over to the chair in the living room and slap her other hand on the chair and saying "seeeet, seeet".. hehehe.. she was trying to say "sit". Then she would say "ook" hehe. such wonderful small moments.


Deep breath..

I will write more later.

Fathers Day, Tradition, Foundation, Business and No we are not Crazy

I want to thank you for all your love, support and positive encouragement. You are all wonderful. Saoirse had a lovely birthday.


Its funny how my daughter is still teaching me about being a person. Saoirse had so much patience with people. (for the most part..) I wish it was 5 years from now so the pain is lower. This is how I feel sometimes. Its been a tough past few weeks. Fathers day is coming up and I am already having feelings about that. Last year on Fathers day Kezia and I took Saoirse to play Put Put (miniature golf to some :) ). Craig and Kristina, as well as Tabitha and Scott were there too. Saoirse was feeling pretty good that day and was having a good time riding on my back on the back pack. I knew she wanted to just get down and run around.. lol.. but she still enjoyed herself. She was very vocal that day.. just talking to everyone :) She loved being with people and people loved being with her. 

I saw this early evening out as the beginning of a yearly tradition to play PutPut on Fathers day. I feel sad because I want her home so we can go play. I have thought about going and keeping the tradition in honor of Saoirse. My body tensed up when I had that thought so I am thinking I am open to it, but just not this year. That made me think of the Fitzgerald Cancer Fund's launch on June 18th. in NYC. This is the day after Fathers day this year. That won. This year fathers day is about Saoirse and Neuroblastoma. Now, I have very little, if any to do with the foundation. Kezia and the board run the show. I want to give a very big hug and shout out to Kezia and all of the board members.


Kezia and the entire board of directors of The Fitzgerald Cancer Fund, Inc (we found a free non profit lawyer service to help file the paperwork for non profit public charity - we have to attend a seminar on non profit start ups which we are really looking forward to attending) have been working tirelessly to organize the foundation and plan our official launch in NYC. I mean hours of nightly board meetings, days and days full of planning and designing and hours and hours of designing media. Planning a launch like this is not as simple as saying "think we will go to new york and launch the foundation" .. there are a lot of details and legal requirements that needed to be fulfilled such as photo releases. We thought at first that maybe we are putting to much into this. But no. We are not. This foundation is a commitment. Kezia and I committed to Saoirse and a lot of other parents that we will do what we can to help. This is a lifetime commitment. Board members are all committed. They are so wonderful.


The purpose of the launch at the Today Show Plaza (which I want to add that we are not invited guests on the show, we are just flooding the plaza) is to officially launch our foundation and bring a heightened and much needed awareness to Neuroblastoma, the deadliest and one of the hardest to treat and cure Child Cancer. 


I have my own project. We still have to eat, pay a mortgage, car payment, heat, etc.. We are starting up a business and so we have a lot going on.. I write all day. We have a manufacturer now that we really like and we are in the final stages of samples before production. We are both pretty busy, and that feels good. Its not easy. I have to have a lot of patience with myself as well as with others. Some days I don't write. I just garden or clean. Sometimes we watch a movie. We have our bad days. Sometimes bad days-in-a-row. Thats ok though, so I am told. Sometimes I have to force myself to get up. So I do because we have to. I have no choice but to get up and work for my self, for my family and for my sanity. I got to talk with other parents who lost their child to Neuroblastoma a few weeks ago. I needed that because I just had to make sure I am not crazy. I am not. They are not. We watched our child die.


With all of our busyness, we still make a point to do stuff non business non foundation related such as art walks, a drive, gardening, a movie, or just a walk around Salem or Neurburyport. The best thing is all of that stuff is free :) 


Deep Breath. This felt good. I needed to just sit and write in this blog. 


** To all dads out there.. you are not crazy. We are not crazy. Take deep breaths often. 

Happy Birthday

Happy Birthday My sweet baby


Saoirse


Today you turned 2. Mommy and I are always thinking of you and you will be happy to know that I am going to cut the grass today on your "tractor" :) There are a lot of people who love you and are thinking of you today. We might have a fire tonight outside because you love fires. Oh.. and I am sure you already know this, but the garden is doing great.. we are going to grow some potatoes this year! We are also trying some new white pumpkins..


Fallon misses you. She guards your toys keeping them safe for your future brothers and sisters. Fallon loves it when Colin, Thomas and Eleanor come over because she knows that they are your friends. Fallon needs her baby fix. :)


We know you are here. We feel your presence in the house and your room and on the yard. I want you to know that I love you so much and I miss you even more.. I feel so privileged to have known you and learned from you. I carry you with me every day and there is not a moment that goes buy that I don't think about you and smile. You always smiled no matter what. You are such an inspiration to us and to thousands of other people though out the world. Yes.. people know you from all over the world. :)


Lets go cut the grass.


Happy Birthday


Love


Daddy

Did the past year actually happen?

Did this past year actually happen? 


As I sit in my office or in my chair in the living room, I ask myself "did the past year actually happen?", "did we really have a child with cancer?" 


I have been having some bad days. I am again being flooded by images of saoirse the day she died. The sounds actually and the image of her getting cpr. I am haunted by all of the doctor talk. I am haunted by the machine that made the loud beeping noise.......


It had been getting better, but I have times where it really floods me. I know I am not crazy, its just difficult. It sucks all of the wind out of me. What was she thinking about? did she feel any pain? did she hear me tell her I love her from across the room? Did we make the right decisions? 


Regret..


Not bringing her home so she could die at home. 


Deep breath




I have been crying for a week actually. I feel such a deep sense of loss. Saoirse's birthday is tomorrow. We are having a Celebration Party for her on June 9th. Saoirse loved life and she loved parties. She loved being around her friends and playing. All of her friends are having birthday parties right now.. Thats the other thing.. we are invited to the parties and we go. Kezia's mom's group are wonderful and have stuck by our sides through and through. We love them all. We bring saoirse's Elmo doll with Curious Georges shirt on.. Saoirse's presence is always there. 

Kezia is also launching the Fitzgerald Cancer Fund by flooding the plaza of the Today Show on June 18th with large poster sized pictures of NB kids. Helping to organize this has been tolling on the both of us.. Its overwhelming actually because there are so many factors in putting it together. We still need to have the posters printed and find a place that is not expensive. The other challenge has been getting people to come down and help hold posters because we have to get there early.. Like super early to ensure the prime location. It is a monday so its difficult i realize. But we will make it work. 


I will write more later.. Also, I will write about our trip to Austin, TX later. This was significant for me because I got to speak with other parents - In particular other dads. 

Bad Day

I am having a bad day already.

NMTRC Symposium, liberation and anger.

We attended the NMTRC Symposium 2012 last week. It is important to us to fundraise for non toxic, less toxic and "out of the box" thinking. We are very involved in the research, we have to be. The reality is, the "standard" way of treatment is not working - it hasn't really changed in 40ish years. Kids should not be getting chemo. I am open to nano technology, which was discussed extensively during this conference, where scientist are getting some amazing results in delivering the right chemo to the cancer cells, virtually leaving the healthy cells alone. This makes it less toxic and can give a better quality of life for the kids. 

I have a lot to write about and will. I want to say that the meeting was bitter sweet. It was awesome listening to all of the doctors, scientist and other key figures in curing Neuroblastoma. My highlight was meeting other Neuroblastoma parents. I need that connection. I need to know I am not crazy. I have good news.. I am not crazy. I miss my daughter deeply. The pain, the loss is completely unexplainable that only a parent who went through a child die of cancer, or who has cancer can understand. 

Meeting all of the Doctors and Scientist was also liberating. I felt complete passion from all of them. I got the impression that this is not just a "job" for them. This is a life's passion. They truly want to help. They all agreed that their research was missing an element though.. The parents.  Meeting us for them was moving they said. It brings another element to the research, the motivation. The deep sleepless nights they have when they are seeing encouraging results in lab mice and rats. They are on the verge of a cure. I feel it. I wish that Childrens Hospital Boston was more about "thinking out of the box". I found myself really beating myself up a lot during this conference. Wishing I had taken her out of that hospital and put her in another trial. I am so upset with all of the doctors who still actually believe that the strong chemo works. Sorry, but stats are stats. Survival rates are actually on the mild decline for Neuroblastoma and still a death sentence for relapse/recurrent Neuroblastoma. And stupid politicians who only do what the doctors say. The childhood cancer arena is absolute chaos. There are wonderful and encouraging trials that are showing results but parents do not have a lot of that available to them. Our doctors were very closed mouthed about other trials. We had to do all of the research and decipher the clinical trial information the government provides. Dell is working on a "cloud" for an all encompassing information cloud for doctors, scientist, and parents. Each having their own portal. This will be huge for terrified parents who's child was just diagnosed. We will participate in the development of the Parent portal, along with other parents. This cloud will enable parents to easily find clinical trials to participate in. It will also allow clinical trials to find potential patients. We were those terrified parents. I can't tell you the sleepless nights we had (and still do) researching trials and a better quality of life for Saoirse. Chemo kills children. Its as simple as that. Now, some kids survive, but almost all have health issues of some kind as they grow up.

I am motivated by my daughter Saoirse. I am motivated by the pain. I am motivated by the love others have for Saoirse and our family. 

More to come. (P.S. - if you are in the greater NYC area and want to come show your support, visit fitzgeraldcancerfund.org for the launch event on the Plaza of The Today Show where we flood the plaza with posters of kids of NB.) 

NYC Today Show Plaza

We are excited to launch our foundation by flooding the plaza of The Today Show on June 18th 2012 with pictures of Neuroblastoma kids to bring more awareness to the world. When I originally posted my idea a few months ago, someone emailed me and said the company they work for can do some of the large poster sized prints we need.. I can not find your email. If you read this please email us at fitzgeraldcancerfund@gmail.com  For more information on what we are doing please visit the Facebook event page:  http://www.facebook.com/events/221552697963446/


Or you can just visit our webpage  fitzgeraldcancerfund.org 


Thank you

Emily Hubbel: Update of Week

Emily Hubbel: Update of Week


Check out her blog.. what an incredibly strong person

Technology with Passion

Childhood cancer research computing cluster to support precision medicine clinical trial

Published on May 19, 2012 at 12:54 AM


http://www.news-medical.net/news/20120519/Childhood-cancer-research-computing-cluster-to-support-precision-medicine-clinical-trial.aspx

NMTRC Symposium 2012

Currently at the NMTRC Symposium 2012.. wow, what a lot of information relating to Neuroblastoma. I will write more detail later, but there are some great things happening in the treatment of Neuroblastoma..

Mothers day.. Please read Kezia's blog.

http://www.newmomnewcancer.blogspot.com/

No mother should have to deal with this

I think the best I can do is just be there for her. Not be overly hovering her, give space and lots of hugs.

Saoirse was diagnosed on Mothers day of 2011. So Kezia has a double pain. On top of that, Kezia was battling her own cancer and going through Chemo. I have been trying to place myself in her shoes to get her through this. I also have to make sure I am ok. I have been having dreams lately about Saoirse.. She is crying for me. I can't get to her. Then I wake up. For just a second, I think its just a dream and I listen for her in her room. Then it hits me.

Deep breath.

How?

How am I going to help my wife this mothers day. I feel so helpless.

deep breath

Kezia couldn't have said it better today:

"I just want her to come home".


Deep breath.

1 Year Diagnosis

Yesterday was 1 year since Saoirse's diagnosis. We are sad.


Deep breath.

I really miss Saoirse today. I just miss her. I also have the most wonderful partner in life. Kezia is such an amazing person.

I finally found the hair color I was looking for.. its a plant based semi-perminant hair color called Special Effects out of Europe. So I decided that for the month of May I will have purple hair with Orange tips and highlights as well as Orange Chin Hair.. Why not its getting shaved off on June 3rd at Gillette stadium to help raise money for childhood cancer at Childrens Hospital Boston..

Finally going purple to represent Neuroblastoma and Childhood Cancer in General. Orange because I love orange and so did Saoirse. :)

Please help sponsor me on June 3rd...

Visit

http://www.firstgiving.com/fundraiser/mikefitzgerald/kidscancerbuzz-off

Click Donate! Thank you :)

I am getting ready to Dye my hair Purple with Orange tips in to represent Neuroblastoma and Saoirse. Now when people ask why my hair is Purple, or give me weird looks (just wait til I'm in my Utilikilt with colored hair :)) They will have to visit our funds website or Facebook page to find out :) I am going to dye it tonight or tomorrow - actually, the entire team we have set up to have our heads buzzed is dying their hair - Read below 

I have a small request to all who view www.myfamilyhascancerx2.blogspot.com

  newmomnewcancer.blogspot.com and follow fitzgeraldcancerfund Facebook page. 

I have a team set up to go shave their heads at Gillette Stadium on June 3rd, 2012 in honor of Saoirse to help raise money for Childhood Cancer at Children's Hospital Boston. As most of you know, Saoirse was treated at Children's Hospital Boston. 

I need all of you to please pass this along --- We need more sponsors for Saoirse's team -- "Team Saoirse". Please tell all of your friends and please share this with everyone you know. This is a very important cause and will help raise a much needed awareness for childhood cancer. 

Here is the link -

 http://www.firstgiving.com/fundraiser/mikefitzgerald/kidscancerbuzz-off

Thank you :)

We had a beautiful child, Saoirse. I still find it hard to believe she is gone.

I miss her so much. I have so much to write about, and am. I will write more tonight. I need to. I had dreams last night that I was trying to get to her.. I could hear her crying for me. I kept going into different rooms.. I was running as fast as I could, but not moving. I was frustrated. All I wanted to do was find her, hold her, comfort her and let her know I love her.

Deep breath.

Picking for Kids Cancer© ™

We had a great time yesterday with my Mom and Dad. We went out to their property at Lake Carolle, IL and camped (in a camper) and then spent the day driving over to Le Claire, IA to visit Antique Archaeology (only an hour from my parents) (the tv show American Pickers). My mom has been having heart trouble (getting better) so I wanted to go see her. Anyway, Danielle who is also on the show with Mike and Frank opened a new resale shop with stuff she picks and also sells (she designs dresses - awesome dresses). Her shop is called "4Miles 2 Memphis". Her mom Sue runs it and Sue is wonderful. Well, this is the beginning of the story of yesterday. My mom was wearing her "Saoirse Pendent" and Sue noticed it and commented on it. My mom told Sue about Kezia and I's story (grammar is bad there i think - hey, its allowed :)). Well, turns out that Danielle's dad (Sue's Husband) has cancer, a leukemia. I was telling Sue about our story and how we struggled with money, and still are, while treating 2 family members with cancer. I was telling her about our foundation Fitzgerald Cancer Fund and how we are now raising money for Childhood cancer and families.

Sue did the most wonderful and unexpected thing,, she started giving us some really cool stuff to auction off on our site. Including a hand autographed photo that Danielle's dad took of her. We are going to auction that off for her mom and dad. The rest of the awesome stuff we are going to auction off for our foundation to help children with cancer. We were so touched. I can't wait to get home and take photos of the stuff (tshirts, signed posters, etc.. ) and get the auction kicked off. It would be great if Mike or Frank over at Antique could donate something small that was actually picked on the show. :)

Anyway, spending the time with my parents was great. They really enjoyed going there too and were excited for the foundation to have such wonderful stuff to auction off. They are incredibly supportive of us and the foundation.

Please pass this along

Hi Everyone..

I have a small request to all who view my blog and follow our fitzgeraldcancerfund Facebook page. I have a nice team set up to go with me to shave our heads in honor of Saoirse to help raise money for Childhood Cancer at Children's Hospital Boston. As most of you know, Saoirse was treated at Children's Hospital Boston. 

I need all of you to please pass this along to help raise money to sponsor me and Saoirse's team -- Team Saoirse. Please tell all of your friends. This is a very important cause and will help raise a much needed awareness for childhood cancer. 

Here is the link - http://www.firstgiving.com/fundraiser/mikefitzgerald/kidscancerbuzz-off

Thank you :)

Lets get our hair cut :)

Today marks 4 months. I just can not believe it. I think about the past 4 months and it all seems like a blur. The past year seems like a blur. The past few nights i have not been able to sleep. My mind is flooded with the last few days of Saoirse's life and especially the last few hours of her life. I wish I could have saved her. I wish there was another way to help with out using Chemo. I miss her so much. I wish I could hold her. I wish she could come out and help and play in the garden while I plant. I see her smile in my minds eye all day long. She was so happy and loved to laugh. I was thinking about her voice yesterday and how cute it was. I really miss hearing her talk and just run around humming and having fun.

Deep breath....

On another note:  I have not cut my hair since last May.. It's almost been a year. I am having it cut soon. I will be participating in Kids Cancer Buzz Off on June 3rd and will be having my head shaved to raise money for Children's Hospital Boston. http://www.kidscancerbuzzoff.org/index.html

Before:

The last day to sign up to join my team to have your head shaved with me at Gillette Stadium is the 13th (today). I created a team you can join if you want to go and shave it all off with me at Gillette stadium on June 3rd 2012. All you have to do is go to http://www.kidscancerbuzzoff.org/index.html and sign up and join "Team Saoirse". When you click the "register now" it will direct you to the Firstgiving site which is where you create your account and it is only $35 to join and come along. Please consider this, all of the money raised goes to Children's Hospital. This will be a fun day.  If you are unable to make it, don't worry, you can still support me by visiting the link and make a donation. Even if it is only $5, it all adds up. here is the link:  http://www.firstgiving.com/fundraiser/mikefitzgerald/kidscancerbuzz-off

Thank you so much and please share my blog with all of your friends. Childhood cancer needs desperate help. 

Buzz off

I have decided to cut my hair at the Kid's Cancer buzz off on June 3rd. Please visit

http://www.firstgiving.com/fundraiser/mikefitzgerald/kidscancerbuzz-off

:)

Missing

I miss my daughter.

I have a wonderful partner.

deep breath.

I haven't posted in a while. Truth is, I have not felt very motivated to write. My life is still very surreal. The past week has been a down moment for me. I have avoided the videos I am making of Saoirse as well as a video I need to put together for our products for our business. The feelings are very tense and I just miss Saoirse so bad. I have clearly been avoiding my feelings. Sometimes I feel that if I move forward, I am leaving her behind. I am also having strong sensations that she is somewhere out there. I still feel as If we are leaving her behind when we leave in the car. When I see something on the floor I still think as I am bending over to pick it up "better pick that up so Saoirse doesn't get it". I have not been sleeping well lately either. Weird dreams but can't describe them.  This all comes and goes.

I miss being a dad. Maybe I fear that if I move on that I will loose that "dad" feeling. I don't know. Today after Kezia went to dance class, I finished planting lettuce and then came in the house to wash my hands. While drying my hands I just stood in the kitchen and I felt the deep quiet. I just felt that I was all alone. It was so quiet I just started crying. I went upstairs to Saoirse's room and sat in the rocker and just cried. I cried hard and loud. It was building up. I have had many moments in the past few days where I just felt full. I knew I needed to cry and let it out. I saw her in her crib, on the changing table.. playing in her room. Then I noticed the little finger prints all over the windows. She loved playing in her room and looking out the window. I never want those windows washed.

We see a lot of people out walking with strollers. I see it in Kezia's eyes that she hurts when she sees this. I haven't been there enough for her. I can and will do better.

Here is a short video I put together of Saoirse reading. Kezia shot it one day as Saoirse was reading her a book and telling a wonderful story. She loved reading and being read to. You can tell that she is so passionate about the story she is reading. Her mind was so strong and imaginative.

Morning joy

Its been a few days since I posted. We have been focused on getting the business started and starting the fund. Researching and writing is the most time consuming. It will all be ready soon.
I have also had a rough past few days. I really miss Saoirse. I had a dream last night that I woke up to a crying baby. For a split second I thought "she is still alive, it was all a dream". Then the reality set in. This all happens pretty quick. I still have a hard time in the morning. I loved getting up and feeding her in the morning. She was so fun. Eating was the first and foremost thing on her mind in the morning.. thats all she wanted... her milk :) hehe.. I was able to capture one of the first times Saoirse fed herself out of a bottle. :)

Remembering Saoirse's comforts

In between folding up cardboard and bundling it for recycle tomorrow, taking the garbage out, washing dishes, reading compost garden websites, andwriting the webpages for our new website (will be published soon). I am using today as a relaxing day.. sorta.. lol.

The past few days I have been off and on.. Last week we found out that Saoirse's autopsy is completed and  her oncology doctors want to meet with us to go over the report. This means we also have to go to the Jimmy Fund. This is going to be very emotional.. but we will be strong, cry and move forward. So I guess I have been a bit emotional and a bit wanting to avoid my feelings.. Today it dawned on me that Kezia and I have to face this and do our best to support each other. I am back on track now and will write more about this as the meeting gets closer.. This week

Deep breath..

When we took Saoirse to the Jimmy Fund for treatment or clinic we did the best we could to find fun things for her to do in between labs, during chemo treatments and / or transfusions.. It was pretty challenging sometimes and the Childlife Specialists and volunteers are wonderful in creating new projects for the kids.. Saoirse loved drawing, painting, playing with the toys, watching the fish and sliding on the slide over and over (when she felt well enough).. The 1 thing she had to do after checking in was to hug the large stuffed bear sitting on the boat in the play room. She loved that bear.. It made her feel real good..

New video coming soon of Saoirse reading a book.. :)

Her eyes told it all.

Short and sweet today.. Its been a rough past couple of days but we are keeping busy outlining and
re-orginizaing our fund, taking steps to incorporate it and then filling out the paperwork for our 501 (c)(3) status. We have asked 2 wonderful people to be board members which we will announce soon.. We are very excited about our adventures.

Another bit of good news is that we found another manufacturer for our products. Finding a sewing manufacturer is not an easy task in New England.. Ug.. We are also pretty much all converted over to Organic Foods. You can read more on Kezia's new blog http://livingorganicforlife.blogspot.com/


Anyway.. I miss my daughter deeply .. my pain is deep today. It gets better, then it gets worse. Normal I am told. I am moving forward though and we have some great new money raising campaigns coming up soon to raise money for clinical trials, research and a better quality of life for children, parents and caregivers of children with Neuroblastoma.. Our goal is a cure. .. More details soon..

For those who read my blog.. I want to thank you all for reading, commenting and sending your encouragement and love. You are all wonderful and it means a lot to me when I get feedback. This is a great healthy release for me and it really helps..

In closing.. I want to leave you with something to think about..

What do you think she was thinking about?  When I took this picture she was just staring out into space..

Sleep when you can.

Just a short post today. Putting together the videos and working on some print / web ads for our website and Neuroblastoma awareness has had an emotional toll on me. It did help in ridding of some bad images and replacing them with great images of Saoirse. It felt good to see her in video and photos and felt good to have all the great memories flood my mind.  It also brought up a whole bunch of emotions for me. I miss her deeply. I rarely left her side and I have no regrets for that. I felt it was important for both of us to be in her life during her high dose chemo and treatment in general. I knew the prognosis and wanted to spend every moment I could with her.

Right now we are putting all of the information together for our new website as well as converting our Fund into a 501 non profit. Some other things we are doing is researching clinical trials for Less toxic and non toxic treatments for Neuroblastoma and Relapsed Neuroblastoma. In the Links section there are some sites of organizations we really like and they are doing some great work. We are also putting together a list of questions parents have the right to ask their doctor (s). There were definitely some gaps in her treatments, gaps in information we received and information we wish was offered to us when Saoirse was diagnosed as well as throughout her treatments. There is much more we are putting together, its just so time consuming especially when we are working on structuring our business. More to come on that soon. We just want to make sure we are spot on.

I miss my daughter.

I have got to do something to blow the lack of Childhood Cancer Awareness and Funding out of the water. Somethin is a brewin.. Stay tuned..

The following photo was taken in the Jimmy Fund in Boston, MA. Saoirse was in for a transfusion and she was so tired and didn't feel well. If I recall she didn't sleep much the night before.. She was so strong and courageous. I will be putting together another video in the series of "she loved" today or tomorrow. I want to share some playtime with Fallon.. One of the worlds most patient and tolerant Boxers.. She loved Fallon so much.

Dance Freedom. Dance Saoirse.

I have been feeling better emotionally. I think it has a lot to do with the videos I have been making. I have been looking through a lot of videos and they make me smile, cry and laugh... My series of "she loved" has been making a difference in my life and helping me remember all the good things.. this is reminding me just how much I learned from Saoirse. Although I am feeling better, I have my moments. The videos are also stirring up some anger. I am angry she was taken from us. I am angry there isn't much being done in the Neuroblastoma world because of lack of funding and support. I am just angry.

I miss my daughter

Deep breath...

Saoirse always seemed to find ways to help her feel better and to just enjoy life. We learned early on that Saoirse loved to dance to music. She had a very distinctive dance. I remember watching her eyes when she danced.. they were full of joy, freedom, amazement and I could just tell that she felt good. She was free of what ever ailed her at the time. In the following clip, she had just endured almost a week of Chemotherapy, yet she didn't let it get her down. Saoirse would seek out to find her musical walker.. she loved that thing.. she played with it all of the time.. The video serves a couple of purposes.. We want to share her spirit with others. We want to spread awareness of Neuroblastoma and much needed assistance to protocols and studies.  If this video isn't working on your phones or iPads try watching it on youtube at this link: http://youtu.be/6LcNiBYz4SI

Facial expressions are priceless and amazing

Saoirse loved learning and loved being amazed at the simplest things. I really enjoyed introducing new things to her because she throughly enjoyed learning. In the following video we had just gotten home from the hospital. I think she was in for either low salt or low potassium. She was pretty cranky mostly because she was tired and needed to sleep through the night with out getting woken up. The other part of it is she just didn't really feel well. We were trying to give her a snack and I was thinking of ways to make her feel better and smile. Ill let the video speak for itself. She really loved being amused and loved showing off how amused she was..

Refreshing to be outside.. Saoirse's Joy

She loved playing outside. She always became excited when she heard we were going outside to play. When she started walking, if Kezia or I asked her if she wanted to go outside to play, she would shake her head yes, then proceed to find her shoes. She was so funny. I remember one day we were outside and after she was finished swinging (she had to swing first. She would rarely play with anything else until she had fun swinging), she wanted to climb her slide house. She walked right over to it and started climbing the stairs all by herself... she truly enjoyed doing things on her own. You could see it in her eyes the amazement, satisfaction, joy and proudness she felt.
We had just returned home a couple of days prior. We felt it was important to get her outside playing and keeping her active during her chemo treatments.  Chemo can really stunt growth functions and puts a tremendous strain on your body.. Particularly a child's body. We wanted to help her stay strong and grow physically because this helps the body heal and assists in keeping the immune system strong as well as boosts self esteem. A positive emotional state is important and we tried hard to keep her growing physically, emotionally and mentally as normal as possible. I am still and always will be amazed at how strong she was during her Neuroblastoma Chemo treatments. Childhood cancer is just not fair. Adult cancers are just not fair. I will still worry for the next 4 years. Kezia won't be considered cured until she is in remission for 5 years.

Now, the video below is shorter and I am trying to find more video of her playing on her climbing toys.. After I stopped videoing this scene, she played on this for about an hour. She would climb the ladder and then stand on the top platform for a while. We would play picky boo for a while, then she would turn the wheel attached to it for a while pretending to drive a car. Then she wanted to slide, so she walked over to the slide and I would help her slide down. It was so much fun.. tiring but fun :). She would do this over and over, loving every minute of it.

Deep breath..

An idea I got from a group in the background of the Today Show today

I saw something on The Today Show this morning that I want to do. There were about 30 people who had small posters of pictures of children who are suffering from a disease. I didn't hear exactly what it was, but later after the Today Show has video available on the website I will edit this with the kind of disease it is. The talent didn't really speak clearly regarding the name of it.. or I just couldn't hear very well.. sorry.

I thought to myself.. "why don't parents, friends, supporters, grandparents and family members of children with Neuroblastoma go down there one day and do this"? "better yet, why not do this for like 2 days in a row to really get some attention to Neuroblastoma?" Financially 1 day is more feasible. This would bring a lot of attention to Neuroblastoma and childhood cancer in general.  I am a parent of a child who had Neuroblastoma and I should be doing this. New York is only 6 hours away from me and I am sure I could recruit people do do this with me. This is actually something I mentioned either in a past blog asked Kezia to post it on Facebook last month.. This is a great idea and I want to do it. It has also been suggested to find a few more local places to do this.. Great idea and I will search.. You are all awesome.

This is what we would need.

1. A cheap, or better yet Free place to stay for those who go from outside NYC
2. Photos printed 11x17 (or similar to that size)
3. Poster board
4. Parents, friends, supporters, family members, grandparents who want to attend. (we would have to get there super early to get prime spots) If someone can't attend due to finances, work, treatments, etc then we can find someone to hold the photo of the child.
5. A date set to do this
6. A set meeting place the morning (s) we do this
7. A mission. A spokesperson has to carry a sign mentioning a fund we will support (which has to be decided before we go)

Thoughts from people who read my blog?

She loved her hair. She loved. She is loved.

I barely remember my 1st haircut. Only by looking at a picture of my Papaw cutting my hair in his barber shop when I was around 2 triggers the hot day in the depths of Mississippi we were there and of me drinking a warm coke out of the cooler. I may have cried.. just not sure about that. I have always dreamt of the day I would take my child for her/his 1st hair cut.

In a way that dream came true.  But it wasn't a dream. It was a nightmare.

Saoirse loved her hair. She loved our hair. She loved pulling our hair.. haha. She had thin, soft and long reddish / blond hair that was silky to the touch. When she started chemotherapy her hair started to fall out in clumps. At night it would fall out and tickle her to the point it was waking her up.. It was falling out during the day and getting into her eyes and bothering her. So we made a call to our friend Melanie who is a wonderful stylist at Shag Salon in Boston. She is awesome.

This is how I wished the conversation went:

"Hi Melanie, Saoirse is ready for her 1st hair cut, its getting kinda long and just a trim would be great and we would love for you to be the one who does this. Do you have an appointment this week so we can bring her down to your Salon? we will bring cookies :)".

Instead this is how the conversation went:

"Hi Melanie, we need to have Saoirse's head shaved because the Chemo is causing it to fall out, we would love for you to be the one who does this. We don't have time to bake cookies right now, sorry. Would you be available to come down to the hospital this week?"


Deep breath.

Saoirse actually didn't mind having her hair shaved. She seemed to like the way her head felt afterwards. Like thistles. Soft thistles. I shaved my head a week later and the first thing she did was feel my scalp to see if it felt like hers.. she smiled when it did. She eventually lost all of her hair until she had a smooth scalp. She loved seeing other people with no hair. I think it was a connection she could make. A feeling between little kids who are going through chemo that no one else could possibly understand. That is my belief. I saw their eyes and expressions when they all looked at each other.


Below is the short video of her 1st haircut.