Monday, October 31, 2011

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.    

Tuesday, October 18, 2011

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.

Sunday, October 16, 2011

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

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 :)

Saturday, October 15, 2011

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..