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

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.

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.

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.

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.

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.