Almost remission ...

Ben, on his bike, near our home.

For the last two weeks, Ben has been taking Dexamethasone (an artificial steroid know to kill leukemic cells) to bring him back into remission (no leukemia). The side effects of this steroid are that he gets very moody and very hungry. Ben has gained 2.5Kg (5 lbs) in two weeks and and continues to eat all day. He is getting a one week break

as his breathing and sleeping are suffering because of the weight. This break will hinder getting him into remission. After the “break” he will continue the Dexamethasone for another week.

On Wednesday, Ben had a bone marrow biopsy, a spinal tap, chemo into the blood stream, chemo in his spinal fluid and around his brain, and two needles in his legs. He “slept” through most of it but was very nervous before the procedures. Thank you Dr. “Lucy” for making the procedure painless and easy for Ben. You’re amazing!

We were worried about the biopsy, as this was to show us results after two weeks of drugs to get him back into remission before starting the stem cell transplant. If the results showed leukemia, he would have to have had a different chemo drug to get rid of the leukemia. Sometimes, the leukemia is very resistant to any drugs, especially

when it keeps returning like it has been. We received the results yesterday showing that there is only 1% of blasts (cells that could be leukemic) in his bone marrow. It seems that those blasts are most likely NOT leukemic. We are cautiously relieved. I say cautiously as we know that nothing is permanent with cancer and that things can change at a moment’s notice. So we live one day at a time and for now, we are happy he is (almost) in remission.

Ben will continue with chemo until the stem cell transplant which is due to start somewhere around the second week of July. At the beginning of July, many tests and pre-transplant procedures will be happening.

Ben is quite happy that he is getting a break from the Dex and is slowly starting to return to his usual self, though he still is eating more than usual. He goes to the washroom over 20 times a day. What goes in must come out. His bum is sore so we give him cream to help with that. His breathing is still laboured, especially when he’s sleeping but it seems to be getting better. He has trouble sleeping and staying asleep due to the steroid but that also seems to be getting better.

Thank you to all who have helped and prayed for Ben. We feel we have turned a corner and we are getting better news these days. I know the positive energy and prayers you all have sent us is helping. Please don’t stop. I believe

it’s working. Thank you also to the staff and parents at l’École des Pionniers de Maillardville. They have been preparing weekly meals for our family to help make our lives a little easier. It is absolutely helping and we feel the community is right there helping us fight this. MERCI à tout le personnel et les parents ... vous êtes FANTASTIQUES!!!

I will be adding videos of Benjamin and Stephanie very shortly.

So onto the next step in Ben’s treatment. Good health to you and your family.