split second moments

I got a lot done yesterday. I feel good about that. I have my garage back and now i can do the service to the snow blower :) No snow yet but need to be prepared. next project is the wood stove in the garage. not sure when though. i felt saoirses presence a lot yesterday. I have also been a bit worried about Fallon. When we started packing bins she started getting a bit nervous. extra play time today for her. I think she is sad a bit.

this morning i had that split second moment again. this time it was noise. i thought i made to much noise shutting the door to my bedroom.

deep breath.

we still have the bedroom to pack up as well as the toy corner in the living room. i am just not ready to fully do this yet. everything i touched of saoirse's for the past couple of days took my breath away a lot. i do not like that sensation. i need a break from organizing. today will be good. a family lunch at kezia's parents house which will be fun. emotional but fun and good to see bob and joan. and then keaia and i are having dinner with friends at Max Brenner's in Boston. Looking forward to the day and evening.

I will write more later.

3:50 Pm

We didn't pack everything. We did do the laundry that was in her hamper. Kezia and her mom did that. I went up and grabbed a shirt and smelled it. her scent. my heart broke. I miss her so much. all i do is think about her.

I got a lot done today. i broke down cardboard boxes and bundled them for recycle as well as did some tidying of the yard. I need to adjust my snow blower so its tighter. a pretty simple process, just need to do it. I was really looking forward to snowplowing paths in the back yard so i could pull her around on the sled.. like we did last year. she really enjoyed it last year, she would have had a blast this year.

deep breath.

i know kezia is having a hard time too. she keeps thinking about how she wishes we brought Saoirse to sloan sooner. i wish the same thing. i was concerned that we went to long with out any type of treatment after induction therapy. doctors told me we have some time. we didn't. i know that this is all part of the grieving process.. but that doesn't lessen the feelings and impact. not yet.

I am pretty much done organizing and cleaning for the day. I may go out to the garage later tonight and work on cleaning my work bench. I have an art project I want to work on and need the space. I also want to hook up the wood stove that is out there.

deep breath.

12:15 pm

Just put packed bins in the cooperage. Sigh. I have pictures. I will post later. I keep thinking about the night/morning she passed. i keep trying not to think about that. but it is so hard not to. then i think about the good times. like the memories of her playing on the floor on the number and letter foam mats. she loved that thing.

Deep Breath. I will write again later and put some new pictures up.

5:50 am on Friday

I have been waking up early on some days and sleep til 9 on others. I am looking forward to starting our business and getting to work. I woke up and for just a split second, it was like everything was back to normal. I quickly listened for the monitor and then poof. it was gone. then the deep sinking feeling set back in. yesterday was a hard day for both of us. well, it was off and on. there were good moments like going to the book store and i got to renew my drivers license. then there was the difficult. we did some organizing yesterday when meant putting saoirse's things away and packing them into storage bins. I worked on the kitchen and kezia worked in the dining room. we both worked on the stairs.. yes, stair storage is the best. everything i touched gave me a quick fall feeling. having it all around was to much. as if all the meds and the medicine station we had set up was speaking to us. constant reminders of the nights we had to give her up to 5 liquid medicines before bedtime. a lot of liquid. we learned to give them to her by favorites. the worse and most quantity is,..oops, was first, then the most tasty and least quantity was last. sometimes she would throw it all up with in 3 minutes of taking it and we would have to start all over again. she hated it towards the end. she was strong.

I get off topic sometimes. back to the kitchen. each item i touched brought instant memories of her. She was so proud of herself when she could fully use a spoon and feed herself. she was so determined to do it herself. we would show her only 1 or 3 times and she would keep practicing. she learned a lot by watching. when i took her little plates and bowl out of the cabinet, i thought about times she would carry her plate around and it would be full of fruit. plate in one hand, fruit in the other stuffing her mouth.. and Fallon following closely behind for all the drops. haha. finding all of the bottles was difficult. those bottles have quite a history. well, starting with saoirse.. but history has to start somewhere. she loved those bottles the most. colorful, grip able and glass. so they helped build strength. 2 of the bottles had to be cleaned. they are still drying on the counter. as if they are waiting for milk and saoirse.

deep breath. I will write more later. more packing and organizing today. light though, mainly putting the bins we packed yesterday into the cooperage. or basement. then i want to clean and organize the back foyer. I think kezia and her mom are going to clean the back porch.

messy

i wish my house was messy again

the kitchen

Today we are going to start organizing the kitchen and dining room, as well as take down the christmas tree. This is very emotional for me because this means getting rid of all of the medicine and equipment such as syringes and meds. Then put away (in storage bins) most all of the bottles, utincels and plates. We also need to get stuff into the cooperage. Another step in moving forward.  I really miss her today. I miss her smiling, playing with the blocks, exploring the house and sitting on the dog. Right now we would probably be reading or building a building and nocking it down :) she loved it when i would build the block building real high so she could knock it down. She loved knocking it down. she would just laugh and laugh. then start building it again. she was so fun. i miss her helping me feed Fallon. she loved helping. i would teach her how to command fallon to sit and wait. she did a good job.

I started to feel pressured to move on and to get all of her stuff packed. These are things that I want to do in private because its so emotional. I don't want others here, i don't want others help except for Kezia of course, when i pack things of hers. Once we get it packed, we could probably use help in getting the bins either in the basement or the cooperage as well as help getting the house organized. Her bedroom will be the hardest I think.. or the living room toy corner. I hear her laugh. it makes me smile. I also feeling overwhelmed by all of the business cards i have received regarding therapist. I don't do well when i feel pressured to see a therapist. we are going to go to a parents group for parents who have lost a child to cancer. give us time. i get it and i also know people mean very well. I need to write more, but we just got  back from running errands and i need to eat. then its time for the kitchen and dining room. putting all of her stuff in a pile and deciding what we are keeping out. it won't be much. only a plate and bowl as well as a few utinciles. We still have mom group friends who will come over who have babies.

It seems that the more i put away, or pack.. the more reality hits that she is gone. weird. ill write more later. i need to eat and do the kitchen

sinking in i think

I wrote the paragraph below yesterday, but didn't post it yet. It has been a very difficult past few days for me. I am having a lot of "what if's". and i miss her so much. i want to play with her. i still feel as if i let her down somehow, because i don't think she was ready to give up. i am convinced something was missed. the salt issue. i need to get away from that so  i keep thinking about the good times and I am pushing myself more and more to watch more videos of her. she makes me smile.  I want to put together a small movie about her. So i am learning iMovie and watching teaching videos and demos. I can not just stop helping get the word out about neuroblastoma. i am still saoirse's father and will keep my word to her to help beat this. the past few days i have taken a lot of down time, just reading the news, doing research on our reboot and just relaxing. i have been out in the garage breaking boxes down and cleaning. i have some winter projects to do and may hook up the wood stove out in the garage. kezia also may want to build the shelves for our dining room. its nice to have heat out there. :) I have to service my "tractor" and put new blades on it as well as get my rototiller running. things to do. I am finding that it is good to have small projects where completion is reachable and is the main goal. I don't like half started. lol. i just feel better when i complete something.

"I have been wanting to write. but when i sit down to start, i easily get sidetracked. Writing brings up a lot of feelings for me. but i also know that it is how i process things. so i write. Yesterday was hard. the whole weekend was hard. kezia broke down xmas eve as soon as we pulled into to her parents driveway. I just hugged her. i understand. it was hard. it was hard going and not having saiorse with us. the back seat is empty. that is very hard to see. my stomach just sinks and tightens up.. like when you are falling fast.
I feel like i am not doing enough. I feel like when i feel i want to move forward, there is a part of me that isn't moving."

Kezia is over at one of her mom group friends. it comforts her to be around them and their kids. saoirse's first friends. i love kezia so much. she is such an amazing person and she is such a great mom. she did her best to expose saoirse to healthy things, foods, environments and art. all she wants to do is be a mom. she is  a mom. that doesn't go away.

my mother is very sick and had to be rushed to the ER by helicopter last night because she had a heart attack. she is having tests done today. i will write more about that later. i am going to seek out a group so saoirse and i can go to it. i want the group to focus on dealing with the loss of a child from cancer. i think children's or jimmy fund may have some suggestions. groups help.

staying upbeat

We seem to be doing a good job keeping the spirit high and thinking great things and memories. I have a lot to write about. a lot. but now is not the time. I just needed a bit of a release so i decided to just put something down.

Rough

Rough day and evening. Its been extremely difficult on both of us. I feel so empty at times. I miss her.

Hugging the heart

I have had a hard time today. I just had to cry. I was cleaning the kitchen and kept thinking of how Saoirse use to come up and want to play with the dishwasher. I miss that. I would talk with her while i did dishes and she played with her magnets on the fridge. She would just talk talk talk. She loved talking. I just listened and talked with her. Each time she spoke her words grabbed my heart a little tighter. That will never go away.

Deep breath.

I am sad today. I just keep letting myself feel and cry. I am also thinking of good things. Her smile, love of life and her happy moments. I am especially thinking of the night we decorated the tree. That will always be with me. I am comforted knowing that needy children will get some cool and fun toys for xmas.

I am going to chill out a while.

Storage

walking through Target around all the shoppers looking for last minute gifts. People buying things for their loved ones. We were there to buy storage containers for Saoirse's clothes, toys and bedroom.

Sigh.. deep breath

I took a shower. Sowers seem very soothing. I can also cry hard and just be alone for a bit. Mornings are difficult, but so are the hours from Noon to 2is. That was Saoirse's nap time. I am still locked into a schedule. I have been having an up and down day today. I miss Saoirse badly. I just get completely baffled thinking that she is not physically in this home. In our lives. I just don't get it. I just want her to know that we think of her every day, all day. That we are not ever going to forget. I just want her to know this. 

Deep breath.

What were her last thoughts? Was she thinking of what we whispered to her right before she passed away? Was she thinking of elmo? Curious George? Fallon? a song? Me? Kezia? Was she freaked out? Was she thinking about a bottle of milk? Her room? toys? her house and yard? I miss her so bad.

Deeper breath. 

Sometimes I think of these things. Sometimes I don't. She just wanted to go to sleep. 

Trying to keep busy

I am trying to keep busy and also trying to tell people our story. So I have been working tweaking my blog making it easier for others to follow and also easier to share through email. I will be making more changes soon as far as content. Just adding an information tab on the latest news in Neuroblastoma treatment and studies.

Deep breath. It just seems to help me when I keep fighting. There are way to many opportunities to really highlight Neuroblastoma and bring more awareness and funding. There is No reason to give up. Times have changed. I am going to work on this little by little. But we must keep moving forward.

Christmas spirit and Laundry

I am sitting here looking at our christmas tree. I can't help but smile because I keep remembering the night we decorated it. Saoirse felt pretty good and had fun bringing ornaments to the tree. We each took a turn helping her hang an ornament. Lol she ran around giggling, talking and carrying ornaments around.

I just watched a video of that night. It helped me feel better and put a smile on my face. I am so glad that was a good night for her. She got to experience the true christmas spirit.. love, family, friends & comfort and peace. She felt that spirit. It helped because I am having a hard time shaking the images of her last moments. It is horrifying. Watching the video helped. I may post the video.

Deep breath.

I began to feel overwhelmed and needed to do something. So i started my laundry, i was due. It is good and important to have some kind of plan today. I really just want to sit and do nothing but watch tv. But I do much better when I do a project. Laundry is my project today :)

Toys

I have been very deep in thought today. I just keep thinking about Saoirse, feeling surreal. Lost. Today we decided to take the toys to the hospital wing today. It was something we knew we wanted to do. Donate the gifts to 6 North. Saoirse loved that playroom and that is where she spent all of her time. It was a joy for her. When she was constipated and had to poop, we took her to the play room to stand up and play with the trains. 10 minutes later.. hehe, poop. It was her escape, but sometimes our savior. I felt good knowing that those new toys, and some of them her personal toys are going to played with and bring a lot of joy to some kids. Its exactly what she would have wanted to do. She was a good sharer. :)

We are going over to some friends tonight for dinner and tomorrow night going to an annual xmas eve eve party. Keeping busy, having some kind of plan seems to be helping. Its like we have gone back in time in a way. its so weird just deciding to take a ride and just leaving. no packing diaper bags, no waiting for naps to be over. Just weird. I need to connect with another father who has lost their child. Kezia had an hour or so conversation with another mom whose baby died I believe at the beginning of September. It helps to talk

I am planning a trip for Kezia and I. Kind of a reboot trip, to process and just get away for a while. I feel weird doing this because I feel guilty if i do something good for myself. I just miss her. I have been thinking about how we want to have the house situated before we leave. This means have all of her stuff packed and in a bin for storage. I just want to come back and not do it, I want to do it before we leave. So we have several weeks to do it. We are doing little bits at a time. we just have to have a small plan each day or else we go nuts i think.

It was weird going back to 6 north today. As i parked the car I kept thinking to myself "maybe it was all a dream". As I walked onto the wing, even though i had a cart full of toys, I felt a rush of emotions and memories. I dreamed of Saoirse running around the corner. She did not like being in her room, if she could be up and out, we were. Walking around the wings, riding in carts and playing in the play room. She loved going to talk with everyone. She had a lot of friends there. Mostly nurses and support staff. I should have stayed there with her more. I am tired and have to get ready for dinner tonight.

Not coming back

She is not coming back.

Quiet

Deep quiet actually. I do like like the quiet in our house. Its just so quiet. The kind of quiet that makes the room feel pressurized. Because there is no voice to great the tension. I feel so quiet that I can't hear anything else. I am so sad this morning and still feel lost. when I woke up this morning Kezia was already up. I instantly listened for little foot steps running across the kitchen. Quiet.

2nd Post today

This is one of the ways I can deal. And try to work through this day. And to try to make some sense out of all of this. I feel so empty and lost inside. I am angry and I hate that we are going somewhere and not packing up a diaper bag and getting Saoirse ready. I am so angry. I feel like I failed her at some point. I feel like I missed something. I feel like she died to soon. I feel like she should not have died at all. I keep thinking about my life in the future and knowing that she will not be there except in spirit.

Deep breath... lots of them

I am angry because the national news isn't talking about Neuroblastoma. I email them. I post to their sites. I twitter. I will continue to do this until they listen and put us on so we can tell more people our story. They should be telling people about it and helping to raise funds to fight it and conquer it. I want to do this. I have to tell everyone about it. more people. Millions of more people.

Deep breath...

I think I will go for a walk. I can't believe it has been a whole week. a whole week.

1st writing for today

Tuesday December 20th, 2011 4:15am.

This is an extremely difficult morning. It has almost been exactly 1 week since Saoirse's passing. All of the images are shooting back to my mind that I have been trying to replace with good ones. I knew this day would come. It's dreaded. But here. I am going to bring my parents to the airport now. It is 4:21 am and I should be back in about 90 minutes. I will miss my parents. Kezia and I went through some of the bags that were with us in the hospital last night. Clothes, medicines, bottles, food, stuffed animals. all Saoirse's. We have not cleaned out the diaper bag yet though. Thats gonna be a tough one. I miss my little girl.

quiet

Yesterday was difficult. Before Saoirse was borne I use to really enjoyed my sunday mornings of drinking coffee, reading the news and watching what ever I could find for TV. No hurries and no schedule. Then came baby :) I missed my sunday mornings for a while. The news was replaced with a fun cute daughter who demanded me to hurry, insisted on a schedule and kept us busy with music time, tummy time and lullabies on the music channel on cable TV. Life was changed. Yesterday I had a hard time just sitting here drinking coffee and reading emails. I kept having this overwhelming feeling that I should be doing something. mixing medicine's, doing research, holding saoirse, checking temp's, making sure she is warm and comfortable. Feeding her.
Deep breath

Kezia and I went through all of the donated toys yesterday, and a few we bought for her. We kept a lot of the books. books are important and we started reading books to Saoirse as a newborn. There were a few special toys and stuffed animals we kept. Saoirse loved sharing and we know she would have wanted her future brother and/or sister to have them. The rest are going to some children who need to feel good and get some cool things. Children who need a fun distraction  from all that is surrounding
them.  Even though it was emotionally draining, it felt good knowing how important those toys are to some children. Small steps.

Fallon came home yesterday. The world's most patient and tolerant Boxer. We are a bit worried about her right now. sometimes it can take a while for it to sink in for her that Saoirse is no longer here. We don't know if she can sense her ashes yet. It feels better that her ashes are here. I feel like she is back home in peace. I am forcing myself to write because i feel so lost inside. the house is to quiet. At night I wake up a lot listening for the crib monitor to see if she is ok. I feel lost, but also finding hope more and more each day. It is getting better. I am not looking forward to tomorrow. It will mark 1 week.

Last nights services was wonderful and liberating. Kezia and I seemed to feel more closure afterwards. I spoke. I am at a bit of a loss for words right now but felt I needed to write just a bit.

Lost. Just lost.

I am forcing myself to write. Today I am going to get up in front of a lot of people and talk about Saoirse. I have wanted to be left alone all day by everyone except Kezia. My dad made a wonderful breakfast for everyone.. love his breakfast. My parents and family are wonderful and a tremendous support through-out the past year and I don't know what I would have done with out them.

I feel so lost because I have noting to plan, nothing to make, I can't feed my baby or put her down for a nap. It is almost 1pm and I keep listening for the crib monitor to start squeaking Saoirse's voice. She would be getting close to waking up from her nap. I loved so much running up there and seeing her smile as I walked in her bedroom door. Picking her up. She would immediately point to the stairs and cup her little hands, like she was milking a cow. Her sign for milk. I miss that. I tried so hard to protect her. to make sure she was warm, safe and comforted.

I will write more in time, maybe tonight after we get home. More than likely it will be tomorrow. I need to write, to get my thoughts out. I think it is important to share and connect.

We are bringing her ashes home tonight. We brought them a curious george lunch box we want them to put her ashes in.

So Deep.

The mornings are the worse for me. I am so use to getting up and taking care of Saoirse, fixing her breakfast, playing with her toys with her and running around. My ache is so deep. So deep.

Update on Saoirse

Our beautiful daughter Saoirse passed away on Tuesday December 13th 2011 at 6:47 am. She fought hard but was just to tired. The pain is so unbearable and deep. I ache all over.

Update on Saoirse

Hi All.  Saoirse has been very sick with a swollen liver for the past few weeks. Confirmed by an MIBG test today the neuroblastoma has attacked her liver. She was immediately planned for and started radiation to her liver this afternoon. She did not have to be sedated for the radiation or planning :) She is so swollen and sore that it must hurt to move a lot.. she gets very uncomfortable when touched or moved. Sometimes she wants to lay on her back, she either sleeps or watches tv. Most of the time she wants to lay on her stomach and knees. more her chest. It seems to relieve pressure from her liver being so swollen. This causes her organs to be squished a bit.. We have her on some good pain medication. We are hoping the radiation starts working immediately.. this will bring her some relief. She is also on medications to help release the excess fluids peeing them out. Her radiation oncologist thinks it should start working pretty fast, based on her last response to radiation to her skull, which was good. this is so stressful.. I hate seeing her in such discomfort and she wants to play, talk and have fun. it hurts me to watch this, and on top of her discomfort from a swollen liver, she is now dealing with side effects to radiation to the liver. nausea, vomiting and all kinds of internal issues such as retaining excess fluids, lack of adrenal glands and low platelets. She stays tough. She stairs at my eyes .. her eyes are scared and confused. deeply. then she focus on what ever is on tv. we are always playing her favorite shows. 

I can't imagine our life without her.

She loves

Kezia and I are both just so frustrated and stressed out. we remind ourselves to take deep breaths and relax. Our minds need to be clear. The bottom line is we are terrified. Our little girl is so sick and she just does not deserve this. She is so full of life and has such a strong personality. She loves learning, she loves coloring and playing with blocks. She loves lining up all of her stuffed animals and giving them each just a little bite of cracker and then checking their heart rate with her stethoscope. :) she loves laughing and doing silly things with a smile on her face and giggling all the way. She loves curious george and elmo.. also loves singing the cat in the hat song. She loves singing ole macdonald and making animal sounds. She is just such a smart little girl for 18 months old. She loves the christmas tree and playing with the ornaments. she loves the multi colored lights. She loves playing with her toy balls and rolling them around and throwing them. She loves picking up our phone and putting it up to her ear and talking. She loves talking. she loves her puzzles. she loves getting a book for us to read to her. she loves turning the pages by herself :) she loves the texture books. She loves dancing and listing to music. All kinds. She loves playing with other kids. she loves playing with and tormenting Fallon, her puppy.. well dog. She loves being outside and playing with her outdoor toys and climbing the ladder of her little house outside. She loves swinging in her tree swing. She loves riding on the riding lawnmower (1st gear low throttle no blades running). Although its referred to as the "tractor". She loves feeding herself with a spoon. She loves holding the bottle herself. She loves drinking out of cups with a straw. she loves her mommy and daddy. she loves her mamaw and papaw. she loves her grammy and grampa... "ummpa". she loves fun and bright colors. she loves going out to eat and being around people. she loves dogs. she loves having fun. she loves climbing the stairs and being very accomplished when she reaches the top. she loves playing picky boo.. she loves looking for your belly button and expects you to laugh when she pokes it. she loves eating and trying new foods. she loves picking things up and looking at them in amazement. she loves showing you how much she has learned. she loves making other laugh. she loves showing off her pretty clothes. she loves helping. she loves playing with the horse & santa magnets on the refrigerator. she loves trying to open the refrigerator to take out a piece of fruit, she knows exactly where it is. she loves looking around for cheese.. loves cheese. she loves taking things our of the refrigerator and handing it to one of us.

she loves life.

Rollover & 3's along with a little salt (Con't)

This has been a trying week. We were discharged from hospital on Saturday morning (thank you to all of the doctors, nurses and assistants who made that happen in a timely manor). Saoirse's sodium and potassium were stabilized. We were sent home with hydration with a simple saline solution for over nights. Unfortunatly Saoirse still has extreme bloating and gas & is backed up. There are many thoughts as to why she is like this, but no one can pin point it. Kezia and I can.. we are convinced this is all being caused mostly by the methadone she is taking for pain. Of course there are other contributing factors such as an off diet while on radiation therapy and probably too much cheese.. The doctors and nurses are not even sure what is going on. This is extremely stressful and scary actually.. they have their ideas, but no real solid culprit or solution other than laxatives, warm baths and massage. They seem to sooth her at night and she does poop at night while she is sleeping and becomes a little less bloated, but its still extreme and uncomfortable for her. X-rays taken while she was in the hospital at the end of last week didn't show anything other than excess gas and poop. Yesterday while at the Jimmy fund for labs and blood transfusion the doctors suggested we try using Reglin (which is a anti nausea at higher doses) to assist moving things along. Its just so much medicine. $$$$$..

The doctors told us yesterday that if her bloating is not better by thursday (next time we go to the clinic) then they will order more scans of her belly. Shame on us for not insisting it yesterday. So on our way home i started wondering why a gastroenterology was not consulted when we discovered there is a problem. So I paged the doctors and let them know we are making an appointment with a pediatric gastroenterology. We received a call this morning from her primary team letting us know they will order scans so the gastroenterology can see what is going on. So we are doing this today at the Peabody location of Children's Hospital. We are hoping that the scans show what is going on so we can fix the problem. We have to go to the Jimmy Fund tomorrow and depending on what they see we may go see the surgeon who did her belly surgery. We will insist she sees a specialist for gastroenterology. The oncology team seems to thik it may not make sense to see a gastroenterologist because she/he may not do anything different.. well we think she needs to see the specialist. Period. So she will.

Rollover & 3's along with a little salt

For as long as I can recall, I have heard "bad things come in 3's". I have my moments of superstition but now I have to hope I become part of that superstition. I was involved in a rollover accident last Monday evening after christmas shopping for Kezia and seemed to have totaled our 4 Runner. I was alone.  It was the most violent rattle I have ever felt. There was no blood other than from a scuff on my forehead from hitting the side window. I walked out of it and was taken to hospital to get scanned and x-rayed. All checked out fine and I was released with a couple of prescriptions for pain. I thought about Kezia and Saoirse the entire time i sat sidewise while waiting for firefighters to break out my windshield. I was worried about calling Kezia and telling her. I waited until I was in the ambulance on the way to the hospital. I was just so worried she would be stressed and freak out and she had to drive to Beverly from Danvers. I consistently assured her I was ok and that going to the hospital was precautionary. I felt horrible because she had to go to another hospital and deal with another medical issue. I know it was an accident but it still had an emotional impact on our family. We will move on and be thankful I am ok.

Saoirse was admitted back into Children Hospital Boston yesterday because her sodium level was critically low. We had to give her sodium hydration. She is balanced back out to normal so she is doing well on that end. The more concerning issue right now is how bloated & gassy she is. She is so uncomfortable and miserable. She had an X-ray of her belly last night and it showed a lot of bass and poop. She is pooping and passing gas on a pretty regular basis, but not enough and it keeps building until night. When she sleeps she is more relaxed and poops and passes gas. But not enough.

This morning saoirse was feeling better and running around and wanted to walk play, she had a couple of hard large poops and was passing gas all morning. Then she took a nap after she was given myralax and things went down hill from there. I am not sure if it was the myralax, but something is making her create a lot of gas, indigestion and bloating and its not letting her body catch up. She just finished double full skull radiation.. 14 fractions. She received it 2x a day which meant she was npo for the entire day, with only clear liquids for a couple of hours in between. So when she got home she ate a lot of food and drank a lot of milk. She had a few days where she was not npo like thanksgiving and that weekend and she drank about double her regular milk intake and she ate all day long, including a lot of cheese.. a lot. I think her system is just in shock and is fixing itself. On top of that she still has cancer that is invading her body. We just want to help her.

I will write more tomorrow... I am exhausted and I am very very sore. Sleeping on that hospital chair last night seemed to have set back my muscle healing in my neck and upper back. I will be better in the morning. I will say now that we are stressed and terrified.

Radiation is Over for now

When we found out that Saoirse's cancer came back, we felt a very strong urgency to stop the cancer. When it comes back there is a less that 1% chance of cure. I have had a strong, deep and dull pain in my inner being since we found out. We have to have a plan in place for a few different scenario's. Saoirse stated full skull radiation on the 17th of November, along with 2 chemo drugs in hopes of stopping the aggressive cancer. We were all set to go to NYC Sloan to do this because sloan does the radiation 2 times a day with a brain saving technique. However Children's came back and told us that they will do the same thing for us. This was important to us and they rearranged schedules and worked extra hours to make it happen. Saoirse handled it like the champ she is. Since she had to be sedated for the radiation, she was NPO all day with only clears in between and nothing 4 hours before the treatment. We had some rough cranky moments but we all made it through it. The good news is that we and the doctors think it is working because her Eye is almost all the way normal and the lumps in her head are getting smaller. She is feeling good and slowly getting back to her old self. It will take some time though. She finished her last radiation treatment tonight.  She has 1 more cycle of cheom starting mid next week and it will last 5 days, then we wait a week and re scan. That scan will determine our next course of treatment. If she is having a good response, meaning the cancer is responding and in control, we will try to get her into the Humanized 3f8 antibody therapy at sloan. If she does not have a good response and If we can't get there, we will more than likely do MIBG therapy, which is a type of radiation that is given intravenously and is radioactive, or we will do a phase 1 trial in michigan it started as a pilot trial testing the feasibility of using molecular-guided therapy in patients with refractory or recurrent neuroblastoma. 


Saoirse just loves life so much and is so smart She amazes me everyday and encouraging her to grow and learn is fun. I learn so much from her. 

My Daughter

I have to save my daughter. I will do everything I can for her.

A better day

This will be a quick update. Saoirse is feeling much better today. Saoirse kept throwing up and was having some tremendous pain so the doctors were concerned about possible swelling in her brain so they ordered  another CT scan. The results were that she did not, which is good. So some medicines were changed and one dropped and low and behold we have a new kid. Saoirse started feeling better, kept her food down this afternoon and evening and even walked on her own. What a relief. I will have a more detailed update tomorrow. Thank you all for reading and following.

Pain

Saoirse is more comfortable now because she is on a Methadone for pain plus morphine when needed. We started radiation last night and she did very well with it. Saoirse had a good night as far as sleeping goes, however would not eat or drink (due to the medicines she is on). We are consulting with nutrition today to see about a feeding tube because she needs her energy to fight this cancer. The other problem is that the antibiotic she is on makes her nauseous. Saoirse is a very strong little girl.

We were suppose to bring her for her radiation today at 8am, however the machine is down so we are waiting. I know it is a machine, but she needs this radiation to have any chance of survival and quality of life. Waiting an hour or so is not much of a big deal in the big picture of things, however she is NPO since midnight and she can't even have juice now until after the radiation. She has to be sedated every time. Saoirse will also have radiation at 5pm. She will be getting it 2x a day for 7 days plus chemotherapy. We will do anything to help her.

I am going to make it my mission in life to help raise money and awareness of the need for more research for the Cure of Neuroblastoma

I will have more detail on this soon. I have a hard time sitting here and looking at my daughter with tumors in her head and behind her eye. It just isn't fair.

We are waiting for her to have her mIBG scan today, which she will be sedated for. (**UPDATE, she did not have to be sedated for this, she slept for the entire thing :))She also starts her 1st round of Radiation today at 4:30, which she will be sedated for as well. All of this sedation makes me nervous, however it is safe. I am also comforted by knowing that she does very well after sedation and she is sleeping, which means she is not in pain. Of course, since we are sedating her twice today she can not eat or drink and she is asking for food. It is frustrating to us because we want her to not be stressed so we have a natural tendency to feed her and take the stress away. When she is under stress we know it hurts her head. But this is the path we have chosen for her and we will deal with it and make it work.

Saoirse has to be on an antibiotic for 2 weeks that makes her feel bad.

I love being a Dad

I love being a Dad.

A deep deep dull pain in my stomach

This has been an up and down day. Saoirse was extra tired today, at least until around 2pm. The doctors think she has an infection in her blood, however she hasn't cultured anything again. What they think she has, is resistant to the antibiotic she has been on, so they changed it to one that works well. Unfortunately it makes her sick. On top of that, Saoirse is in a great deal of pain in her head and behind her left eye so we started her on Morphine today instead of Oxy. What a difference. Once the medicine kicked in, Saoirse kicked it into high gear playing, dancing and just being happy and comfortable. This was a sight for Kezia and I's sore eyes. Most of the day Kezia and I have been reading and researching different therapies for Recurrent Neuroblastoma. We had to make a decision by tonight because there is an urgency to start. Saoirse's tumors in her head are growing fast. First we are doing head Radiation combined with a chemotherapy she has not had yet. The chemo drugs are Temozolomide, which is taken orally, and Irinotecan which is IV. The doctors feel this is the best route to take to try to stabilize the cancer. I have to tell you that these are not the decisions parents should have to make. I have had a deep deep dull pain in my stomach along with a lump in my throat.. it feels as if all the pathways in my breathing system are swelling. This started when i finally allowed myself to think that Saoirse may die. She was doing so well and had a great response to her induction therapy and was even in remission. The cancer came back with in weeks and even grew through a high dose chemo regiment called ICE. Neuroblastoma is a nasty cancer and tends to become resistant to drugs. Radiation has a great response rate so keep your fingers crossed. I feel so helpless and all I want to do is hold her and make her comfortable. I am also feeling sad, yet optimistic because we are starting the radiation asap. Once we get it stabilized there are a few therapies we are looking into. I will write about that another day. I am feeling very overwhelmed.

An unsure path

I have been bad about updating my blog. Maybe its the feelings that it brings up that I want to avoid. Or maybe it is because it puts the reality that my daughter may die in the front of my mind. No parent wants to thank about that. For me it is important to deal with my feelings and move forward so I can be there for Saoirse and Kezia.
I worry about Kezia a lot. I will never know, or pretend to know what the bond is between mother and child. I just see the pain, fear and worry in Kezia's eyes every day. Kezia is a great mother and all she wants to do is take care of Saoirse the best she can. I really admire her.
Saoirse had a CT scan done the other day after a high dose chemo called ICE and the doctors found new growth lesions in her skull. This means that the cancer is very aggressive and the doctors are now unsure of her next phase. Well, we think. No one has really talked to us since we received the results. We are suppose to leave for NYC tomorrow morning to have an mIBG scan done and another bone marrow biopsy, then start 3F8 antibody therapy and radiation in her abdomen and skull. This will be at Memorial Sloan-Kettering.  However Saoirse cultured positive for a bacterial infection in her blood so we were admitted to Children's Hospital Boston last night for IV antibiotics.
I just want my little girl to feel better and play like she loves doing. I cry a lot the past few days. It has hit my wife and I that Saoirse is very sick and could die. Or maybe we are just now willing to admit that fact. Neuroblastoma Stage 4 high risk is a very nasty and smart cancer. There has to be a way to help stabilize the cancer and we are hoping the doc have some answers for us today.

Wishing I could take away the pain, frustration and sickness

As I watch our daughter try to play, want to eat and wish she could go outside and play. She is only 17 months old. I feel so frustrated and sad that I can't take her pain away. She is getting better and we are hoping that today she will not throw up. Throwing up makes her feel so bad. You can just see it in her eyes that she is so tired of it and that she feels so bad. Her eyes are very verbal.

This picture was taken several weeks ago during a 2 week hospital stay for surgery and chemo..

I have been working on putting photos together that show a progression. I am starting from her infant photos on. I know this seems boring right now, but sometimes it is just hard to write. :(

The stresses of a family taking care of an infant battling Neuroblastoma

We brought Saoirse home last night after being in the hospital for 6 days receiving a Chemo cycle called ICE. ICE is a combination chemotherapy that uses three drugs: ifosfamide, carboplatin and etoposide. It is pretty powerful stuff. Saoirse had already had 6 cycles of the standard chemo for High risk amplified Neuroblastoma stage 4. They had to do another cycle of more powerful chemo because the doctors at Sloan-Kettering found cancer in her bone marrow. All other scans showed negative, which is a good thing. The fact that Children's boston showed a negative marrow biopsy and sloan showed positive is chalked up to sampling. Plus Sloan tests the front of the hip as well as the back of the hip, so they have 4 samples vs 2 at children's. The key is that we found it and fingers crossed that the ICE will get rid of it. Now, along with this ICE comes a rough week for Saoirse and a stressful one for Kezia and I. The Carboplatin causes a lot of nausea and vomiting, so Saoirse is on 4 different types of anti-nausea medications. In the hospital these are given introvenisouly, but here at home they are given orally which is very difficult because they tend to make her vomit her lunch. 


Now, the stress. I am starting to see it in Saoirse's eyes that she hates this. Her eyes are asking "why" and help me. She has such a strong personality and is learning more how to communicate her distress. It kills me to see her go through this and I just want her to have a normal life and it upsets me that this is a normal life to her. She is 17 months old tomorrow and she knows how to put on a blood pressure cuff and knows what to do with a stethoscope and thermometer. I feel so helpless because I can't take away her pain and nausea and make her better. It is a very powerless feeling and I am sad a lot. I deal with this by crying and talking, and now writing. I will admit that I let my frustrations build and it comes out sideways sometimes. But I try to always keep a smile on my face and keep looking up. 


This is important because when she takes her medicine she hates it and if she sees me stressed or frustrated then that makes her more tense and stressed. Kezia hates puke so she gets frustrated at the thought of Saoirse puking while taking meds and if she does, Kezia gets even more frustrated, then I get frustrated, but I have to try to stay calm because I can see Saoirse react to Kezia. Kezia hating the puke is one thing, but if Saoirse does throw up that means that she has to retake all of the medicine. Ug.. 


This is not easy. I will write more later. There are so many things to do around the house and I have to get things put away outside for winter. Luckily it only snowed a couple of inches here in Danvers so most of it is already melted.    

When a child has cancer

Our daughter has cancer. We will do anything to help her. She is a toddler so we are her voice, although she is doing a great job of finding her own. we are her ears, although she is starting to pay more attention to nurses and doctors. Wish she didn't have to.

Kezia and I are becoming more and more appaled at how much pediatric cancer and research gets drowned out in mainstream society and the media. No more if we have anything to do with it.

The choice is made

We have decided Saoirse's next phase of treatment is the 3F8 Antibody Therapy at Sloan. Their protocol requires another sample of bone marrow taken from the front of Saoirse hip. She has to have anastesia for this and I always get real stressed and nervous when she is sedated. This stress is higher now that she has no adrenal glands. We will have to give her a stress dose of hydrocortisone on the day of the procedure. We are getting prepared for the trip. It in and of itself is stressful. We have so much stuff to bring with us, and believe me it is needed. We are concerned about insurance. There is an extreme process to get this whole thing approved. I am not much into writing tonight, I am very tired and have to get up real early.

Kezia's Blog Information

Kezia's blog

newmomnewcancer.blogspot.com



Kezia writes a blog and please know that her blog is written by her and my blog is written by me. We each write from our own prospective and styles :) Please visit and read her blog.

Off to do something fun

Ok, we are headed back to NYC tomorrow morning early so today we are headed to Salem, MA to walk around and do something fun. It is free, we make the most out of free :)

Long Past Due

My name is Mike and I am the father of a wonderful 16 month old little girl named Saoirse and the husband of the love of my life Kezia. I have put off this blog for 10 long months because quite frankly... I was avoiding it and scared of the emotions it will bring up. I can no longer avoid it. I need to share my story.. no wait, I need to share my life during these past 10 months. Back in January of 2011 my wife Kezia was diagnosed with Stage 3b Hodgkin's Lymphoma. Back in the beginning of May of 2011 our daughter Saoirse was diagnosed with Stage 4 Neuroblastoma NYMC gene amplification. I am going to tell you about my life over the last 10 months, but first I need to say that Kezia and I are extremely stressed right now because we are currently deciding on our daughters next step in her treatment. Saoirse has had an excellent response to her induction therapy, which was 6 cycles of chemotherapy and surgery to remove tumors on her Adrenal glands, which were also removed. The next step is either a Stem Cell transplant, which includes 5 days of extremely high chemo therapy which will give her short and long term effects. The other option we are looking at is 3F8 antibody therapy at Sloan-Kettering in New York City, which has no known long term side effects. It is painful during the treatment though which is managed with pain medication. Both have similar results. But there is no guarantee that the cancer will return. Neuroblastoma is highly aggressive and has a high probability of coming back. I can not say that this will be the hardest decision we ever make, but it will rank up there and is currently number 1. I was leaning to the transplant. I think this is because i am a creature of habit and am comfortable with the staff at Children's Hospital Boston. The transplant is extremely hard on the patients. Kezia is leaning more torwards the less toxic 3F8 antibody therapy. We just returned from New York where we met the doctors who specialize in Neuroblastoma. Sloan-Kettering is a nice place and everyone was very friendly. Good bedside manors are very important to me. I was glad to find a warm place, not a cold one. I have not choice but to look hard at this therapy for Saoirse because it is less toxic and results are the same as Stem cell transplant. My conflict is why isn't Children's Hospital Boson doing this antibody therapy instead of chemo and transplant.. It may simply come down to cost and preference of treatment.

We must do what is best, or what we think is best for Saoirse, not us. After much reading and soul searching, I am now leaning more towards the 3F8. If i can provide her with a less toxic treatment and get virtually the same results, it comes down to quality of life.

Anyway, we are heading back to New York on Monday to meet again with the doctors at Sloan and to have a different marrow biopsy done for saoirse. I currently have a cold and need to get better by Monday so I am off to bed. I am sure this is very choppy for a first blog post, but I promise to be more detailed. Tomorrow I will also start telling my life during the past 10 months

Kezia blogs too.. newmomnewcancer.blogspot.com