The news

This is my first post. Below is the text of an email sent to extended family last week to let everyone know what's happening with Malcolm. In my next post, I will provide a bit of an update.

Hello Everyone,

We wanted to share some recent news with all of you. Malcolm has been diagnosed with leukemia and will begin treatment at the end of this month. He will be treated with chemotherapy and will be in the hospital for 4-6 months, though hopefully each month he will be able to come home for a few days.

The really good news is that his prognosis is excellent so there is little doubt the treatment will be successful.

Jan's parents are moving out here for six months. They intend to rent a house or apartment nearby. They will likely take care of Donovan two days per week and help out as needed on evenings and weekends. Donovan will continue to go to daycare for three days/week.

My last day of work is tomorrow. I am taking a leave of absence and will be spending the majority of my time at the hospital.

Many of you may recall that soon after Malcolm was born, he had to be treated for a blood disorder with chemotherapy for a week. This blood disorder meant that he had a 20% chance of going on to develop leukemia (specifically, AMKL - a type of AML unique to children with Down syndrome). They have been monitoring Malcolm very carefully because of this risk and so they have caught it very early. There are seven hematologists/oncologists who will be overseeing Malcolm's treatment and we know them all and like them all. We also know several of the nurses and they are wonderful as well.

The plan is that he will have surgery to remove his adenoids on June 24 (which had been planned before this diagnosis came along) and at the same time have a final bone marrow test and they will insert a central line. Hopefully he will only be kept in overnight and then come home for the weekend. Then on the following Monday he will be admitted to begin chemo.

So we are not really looking forward to the next several months but we try to keep in mind that in the grand scheme of things, this is only a few months of our life. Also, we are very lucky because we are so close to the hospital - not even a ten minute drive. Jan works in the building directly across the street from the hospital so he will be able to pop over for lunch or a coffee break some days. Donovan's daycare is also very nearby.

Malcolm will be in a private room with a built-in parent bed and private bathroom. It is a new wing so everything is quite nice - there is even a flat screen TV and DVD player in the room, and wireless internet access for my computer, plus a small fridge. There is a small kitchen on each floor and laundry facilities. There is a large playroom and a playgarden right outside the hospital.

Until next Thursday, it is life as usual except that I have some time off work to get caught up on stuff around the house, which I am really looking forward to. We have talked to Donovan about what is coming and he coping really well so far. Malcolm is doing really well - he has been making great progress at daycare - he sits at a tiny table and chair for lunch with all the other kids, can climb up stairs and even a small ladder to get to a slide which he loves to go down. He is very close to walking independently and can crawl really fast. He knows about 8-10 signs for words and is getting pretty good at communicating that way.

If I have an out of date email for someone, or if you notice an email address is incorrect, please forward it for me and let me know the correct email. We may start a blog at some point to keep people updated but for now will rely on emails.

Hope everyone is doing well,
Mary Ellen