Sunday, October 18, 2009


While this blog is about Sammy's journey through leukemia, and you get to know my inner-voice (typos and all), there are a few major players in this who are crucial to the story. Brian AKA Daddy, is the 'doer' of the family. He actually gets Sam to be more upbeat than I do and has created a wonderful schedule of rest, play and schoolwork each day. Brian is taking time off work until December and has become the main caretaker. I love how strong he is with it all, especially dealing with my overbearing determination to be in charge of everything even though I'm not there.

Jack is the big brother. He has experienced life-changes through this and has been so strong. I know he misses the time we usually spend together and has had such a disrupted schedule in order to keep Sam as comfortable as possible. It is very hard to meet the needs of both children at this time and we are determined Jack will stay as normal as possible.

Yet bedtimes are now much later (I was a fanatic about getting them enough sleep each night), and Jack even sleeps in my bed so I can be by Sam's bedside all night (they share a room). I am still debating the fairness of this but feel Jack would be worse off being woken up all through the night. Nighttime routines are structured around the meds schedule. Sam insists I give them to him at night so Brian reads to Jack. I then have snuggle time with both boys separately. This gives me time to chat and catch up. Of course it also delays sleep but it is so essential to connect.

Homework is less challenging now - well for us, Jack hates it! Again, Brian tends to do this with him as I am back from work and tending to Sam who plays the sympathy card no end with his need to see Mummy. Activities for both boys have stopped but we want to get Jack back to a sport and to playing his guitar. The leukemia cannot be totally blamed for this as the guitar teacher was unable to come at an early enough time so we need to find a new one. Jack was also torn between football and soccer so we couldn't book him in. It is essential to get these things back in action, however. Sam will go back to golf when the next camp starts in the spring.

"Supersibs" is a wonderful resource for siblings of cancer patients. In fact, signing Jack up for it was the first thing I did after diagnosis. Jack received a letter (mass produced) from Mia Hamm telling him all about how she felt being a sibling of someone with cancer. It really seemed to help him at the time. Periodically, Sipersibs will send Jack a goody bag to help remind him he is special too.

There is also therapy. We are never in the hospital for the Tuesday therapy - one for Sam with other patients, one for Jack with siblings and one for the parents...for me as Brian does not want to go. Although the thought of therapy using up some time we can actually be together worries me, I know it may help us all get through. The commute is too far to CHAM when we are home so we are looking into the Guilda's Club in Westchester.

The biggest help for Jack is his best friend, "M". Even when I haven't seen Jack for a while, he would rather go to M's house to play...a good sign he is doing well. The two boys play so well together and the independent stage Jack has reached will also help.

Being from England has posed problems with staying connected to family from day one, but now it is harder than ever. Because we are twixed and between hospital, neutropenic states, and small windows of 'somewhat normal', we have not been able to have my mum, Nana Haze come over. This is so painful for both of us as she wants, more than anything, to come and look after us, and I need a hug from my mummy! Nana Haze has Lupus which prevents her from being able to leap on a plane and drive herself around, so we are waiting for a time when we are more able to have her stay....fingers crossed for Christmas. I can't imagine how hard it must be to be three thousand miles away when her grandson is so sick...I do know how grateful I am that she has allowed me to take my anger out on her over the phone, snap and moan, and cry when needed. My mummy has been looking after me so well!

Nana Susie and Poppa are the 'on-call' grandparents. They have been woken up at three in the morning to come to Stamford to be with Jack as we rush off to the hospital. They collect, feed and add support as needed and even back-off when required...that sound so harsh but anyone who has faced traumatic times will know that sometimes you just need space to breathe. They do that with love and understanding. Nana Haze also did this when I was so down I told her to stop calling everyday! Parents are amazing at really getting what their children mean from their words...we love our parents so much.

Da family and friends - so many wonderful people who have cooked for us, looked after our pets, helped out with Jack, passed on news so we didn't have to, and supported us though this. Prayers have been said across the world, they are really working. They say it takes a village to raise a child, and we have a network of friends, family, and parents of the children we teach, helping us through this time. Most special of all is the way the children have helped..sending cards, making gifts, our neighborhood kids pooled their own money together to buy Sam some games...their own idea.

So many special people...Sammy is a lucky little boy.

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