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.

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

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.

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.

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.

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.