Bathtime

I think the photos above demonstrate how Malcolm felt about his first real bath in almost eight months. He and Donovan had a great time in the tub.

On Wednesday we met Malcolm's new speech therapist. She seems great - she is very experienced in dealing with children with Down syndrome and I think we got off to a good start. She very much encourages the use of sign language and will also work on sound development. She was mainly observing his communication and asking me a lot of questions to assess his skill levels and assessment will continue at our next session in a few weeks. Like all of the speech therapists who have met Malcolm, she seemed very impressed with how motivated he is to communicate and how hard he tries to make himself understood.

Malcolm's love of books has really been blossoming. Just a few months ago he was very disinterested in books and now he can't get enough of them! He doesn't like to listen to stories but likes books with lots of colourful pictures, and likes the books with flaps he can lift up. He has also started to grasp his markers with his finger and thumb instead of with his fist which I think is good progress on the fine motor side. He has been very energetic this week and is certainly one busy boy.

Mary Ellen

We're done!

Malcolm had his very last chemo treatment today - we are done round six and done all his treatment! He also had his central line out. His counts are all nice and high - ANC jumped up to 2,600, hemoglobin was 127 and platelets 344.

It seems surreal - it is strange to pick him up and not have to worry about pulling on his line or worry about him snagging it on something as he plays. In a couple of days, once the site where the central line was inserted has healed over, he can have a real bath! Donovan is very excited at this prospect. We can finally try to get back to normal and not have to worry about going to the ER if he happens to spike a fever. In fact, Malcolm may never need to be hospitalized again - how crazy is that?!

The photos above were taken about a week and a half ago. Malcolm was invited to the party of one of his friends from daycare. We agonized over whether he should attend or not but decided it is important for him to start enjoying regular things again. I have also taken him grocery shopping this month - in the fall, we were avoiding taking him anywhere because it was cold and flu season and he was so susceptible to catching stuff. Now we figure that although his immunity is still a bit compromised, it should be ok to take him a few places where there are other people, especially if it will be a good experience for him. He had a great time at the party and we feel we made the right decision to take him - thanks Harry and Irene!

I have been meaning to write a blog entry about Malcolm's birth as this is a topic that people are often interested in. I have started drafting it and will post it later this month. In meantime, if you are wondering what it is like to receive such unexpected news at birth, I encourage you to go to www.kellehampton.com and play the video. The first half of this video describes an experience that I think is quite typical.

Feel free to celebrate on Malcolm's behalf - we certainly are,

Mary Ellen

Clinic visit

Malcolm went to clinic yesterday but not for his final treatment. We learned last Friday that they have scheduled OR time for next Monday January 17 to give him his final treatment, do the bone marrow biopsy and remove his central line. This is better for Malcolm as it is one sedation instead of two. The whole thing starts at 8:00am so we must be at the hospital by 6:30am - good thing we live so close!

Yesterday Malcolm had his dressing changed, a CBC and saw a doctor. The dressing change went well - hopefully our last one ever!!! His ANC surprised us by dropping a bit to 900. The doctor said this is not unexpected given that he has the two treatments into his spine following his intensive round of chemo last month. While the drug shot into his spine primarily remain in the spinal fluid, some of the drug can cross into the bloodstream and so affect his counts. His hemoglobin and platelets were good at 118 and 227.

We discussed with the doctor Malcolm's followup plan. Basically he will have bloodwork done and see a doctor monthly for the next 18 months and less frequently after that. Some of the monthly doctor's visits are with our pediatrician instead of at the clinic. The primary purpose of seeing a doctor is to have a physical exam which includes feeling his spleen and kidneys and also his lymph glands. He will be followed until he is an adult, mainly to check for any late side effects. If he were to relapse, it will likely occur within the first few months and after 18 months relapse will be very unlikely. Relapse in general is very unlikely as only about 5% of kids with Malcolm's type of leukemia (AMKL-DS) relapse. Also, kids who relapse tend to be older at diagnosis. Malcolm was under two years of age at diagnosis which is a very positive prognostic indicator.

So we are almost done! For those of you in Ontario, mark your calendars because we are coming home February 6 - March 10 (well, the boys and I are coming home... - Jan will join us part of the time as work permits).

Today we are celebrating Grama Rainey's birthday. Donovan is pretty excited that we are having a little party for her tonight.

Mary Ellen

Almost done

Malcolm had his second of three lumbar punctures for this round yesterday and it went well. He has his very last one next Wednesday - this will be his very last dose of chemo! So we are almost done - they will do a bone marrow biopsy next week as well to confirm that he is still in remission but this is more a less a formality at this point as he shows no signs of disease. Malcolm's type of leukemia has a very low relapse rate so although he will be closely monitored for the first 12 months or so and less frequently for years, no one really expects that he will have any further trouble.

Yesterday Malcolm's ANC was 1200 which is just a bit below the "normal" for 1,500 - 5,000. His platelets were 325 and hemoglobin 120, both in the "normal" range, so his counts don't seem to be unduly affected this round which is a relief.

We are expecting his central line to be removed later this month (no date yet). This is exciting because as soon as the site heals he can have a real bath! He hasn't been able to have a real bath with toys and bubbles and lots of warm water since last June. The dressing which covers the spot where the central line enters his chest must be kept dry. So it will be very exciting to have it out - Donovan keeps asking when Malcolm can have a bath with him so he will be very excited as well.

A friend called today and asked if we wanted to meet her and her kids at a playground near the water. At first I said no because it was almost lunchtime but then changed by mind and said we would go. It was a really good decision as it is quite warm and sunny here today with no breeze (unusual for Halifax) so a great day for both of the boys to run and climb - Malcolm had fun in the swing and going down some slides. Grama and Grampa Rainey were waiting to take Donovan on an outing when we got home so he decided to let me pack him a little picnic lunch to eat outside with them - a real treat in the middle of winter!

Mary Ellen