Tuesday, November 29, 2011

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. 

Friday, November 25, 2011

My Daughter

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

Saturday, November 19, 2011

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.

Friday, November 18, 2011


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.

Tuesday, November 15, 2011

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.

Monday, November 14, 2011

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.

Wednesday, November 2, 2011

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. :(