Monday, May 30, 2011

The dark cloud of Neuroblastoma

I came home the other day from work to find Dylan in the kitchen clutching a handful of hair and tears in his eyes. By the evening I found myself shaving what was left of his hair as my son transitioned back to the "sick" look of a child with cancer. A flood of emotion ran over me, it was more of a shock than I thought and I spent a period of time crying in private. Dylan is doing ok, but he is still neutropenic and Tim and I have told the doctors that we are ceasing the current study. In the light of knowing that Dylan did not truly progress as thought, putting him through treatment that is harming his immune system and physically changing him, the balance of life quality is high on our agenda. Dylan has also suffered from emotional changes and is having severe mood swings. He has told us that he does not want to continue this study and we respect his wishes. If he was progressing then our views and Dylan's would be different. Dylan is wise and knows that it is not a critical therapy, it's just another "let's see if this one works" rather than a "this one has to work now" kind of treatment.

We have lost a lot of children, many of late, the passing of Nick Franca and Jake Miller was very hard, especially for Cain who was very good friends with Jake. There have also been many children receive bad news and returned home for Hospice care. The hardest is yet to come for me personally.
Mason Thomas is a child who I have known almost the entire time that we have been in New York. His mom Kelley and I have become very close friends, probably one of the closest friends I have made since coming to NYC. They live in Virginia but spent years with Mason in remission (NED) and having regular 3F8 antibodies. Kelley and I have a mountain of memories together, the good and the bad. Those who have followed Dylan's website would know that we joined Kelley's family reunion in the Catskills and Kelley's family made Dylan and I feel a part of their huge loving family while we were here on our own. Mason has now been given days to weeks to live, and Kelley is now facing the task of planning his funeral. I don't care how much hope you have as a parent, at some stage during the cancer diagnosis and treatment period you think of a funeral for your child. You push it aside and keep it moving, but for many, it becomes a nightmare reality. I love all of these children, for different reasons, some pass and they hit me hard, some give me peace because I could see their time here was complete, but then there are ones who I almost consider as one of my own, and Mason is one of them. I have snuggled up in a hospital bed with this child, stroking his head as he pushes through the nausea of chemo, held his "spew" bucket for him and held him down as Kelley had to give him injections of GCSF. I think too that each passing gets harder for more, my skin doesn't get tougher as some may think, a chunk of my heart goes with them, forever. I am in emotional turmoil of constant bouts of crying. Countless text messages to his mom Kelley, and a battle of emotions. My heart tells me to go to Virginia and run to Kelley's side, but my head tells me logically that I cannot emotionally deal with what's ahead, not face to face especially. The last time I saw Mason was at MSKCC, I went to visit him about a month or so ago, he was in his hospital bed with new red Nike sneakers. He was wearing them in the bed he loved them so much. Tim's last memory is when he stayed the night at our apartment a few months ago and Tim made him eggs and bacon for breakfast. Kelley was so happy that he actually ate, the chemo was kicking his appetite but Tim's breakfast did the trick that day! I don't want that to be our last memories, I want to see Mason again, I want him to hug me and say "hey Mel, what's up!" but at what cost to my mental health and my families anguish for my emotional state. I usually don't have the courage to read the websites of children I know are close to gaining their angel wings, I get half way through and close it down, flooded with tears. Not this time, I will read every last word and let the emotions in, I owe that to Kelley who is doing an amazing job, I am so proud of the mom she is and the love that her whole family have for one another, especially for Mason. Kelley's words at this time are important I will cry multiple times a day as I think of Mason, until he is called to heaven. If I could take away the pain from anyone it would be Kelley right now. I feel this so hard in my heart and Kelley must feel it a million times over. I cannot even imagine what more pain than this feels like. Kelley and Mason are fully supported by friends and family and more love than most I know, so that gives me some comfort that I cannot be there.

It sounds selfish that I am saying how horrible this is for me, but what I am trying to relay is to somehow give everyone who read's Dylan's journal an insight of how having a child with cancer is. Putting it to words is almost impossible. It's not just "your" child. You meet so many along the way, especially if you spend multiple years in an institution like the Ronald McDonald House, it just gets harder, not easier. You bond with other cancer families more than you have ever bonded with people before. It's a bond that is with you for life, like your a member of a family you never knew you would be part of. You don't know the shoes until you have walked them, and for us pediatric cancer families we share that unique bond. Dylan is much more well than most with Neuroblastoma and I thank my blessings every second that this world turns, but deep down in a dark place in my heart, I know how close to the edge of the cliff we always are, even if it appears we have come so far...we really haven't, just a gust of unexpected wind could change everything forever. We are still in limbo, we have never been rid of the cancer in Dylan's body since he was diagnosed in 2004, and we do not know what lays ahead for his future, or ours. I never like admitting it but Dylan's chances of growing to adult years are very slim.

Please keep Mason's family in your prayers and let Kelley's words on Mason's website leave you with such a value of life and how precious your children truly are. Click HERE to see this remarkable family and wonderful kid Mason, affectionately known as "Nate". The whole thing sucks, it's not fair, it's just plain not right. I just wanna screeeeeeam!

The photo above is the last photo of Dylan and Mason together at MSKCC about a month ago. God be with you Mason, we love you so much, be brave young man, your always in our hearts.