Just a quick update. We saw the doctor yesterday to discuss the finalized treatment plan. We did not really learn anything new but it was nice to be able to ask a few final questions before treatment begins. They changed the dressing on his central line and it looked good. I took him in again this morning because there was some oozing from the site. They changed the dressing again (not a pleasant experience) and the doctor looked at the site. It does not appear to be infected, which is good. So hopefully that is our last visit to the hospital until next Tuesday!
Malcolm has taken some more independent steps yesterday and today so he is well on his way to being fully upright...
Mary Ellen
Wednesday, June 30, 2010
Monday, June 28, 2010
Pictures
Here are a few photos. The one of Donovan and Malcolm was taken a couple of months ago. Malcolm was in his stroller at the public gardens earlier this month - he often has a good time in his stroller. The photo of him standing was taken today - right after he took his first independent steps! Guess that's a sure sign he's feeling better.
Mary Ellen
ps - on a technical note, the timestamp on each blog from now on should be correct. The default was Pacific Time so the first few blogs were stamped incorrectly...
Saturday, June 26, 2010
We're home!
We made it home yesterday around noon. Malcolm fell asleep on the ride home and then slept in his bed for over three hours! He seems fine today and the line does not seem to bother him. The doctors have decided to delay his chemotherapy treatment by a week. This is to ensure he is fully healed before they start in order to minimize the chance of infection as his immunity drops. Until then, we will remain at home and are in charge of clearing his line with heparin every day. This Tuesday we go in for a check-up and as far as we know they intend too start chemo the following Tuesday, July 6.
Mary Ellen
Mary Ellen
Thursday, June 24, 2010
The night of
Malcolm did well today. It was a long procedure - about three hours. He started just before noon with an IV insertion as soon as he was sedated followed by a platelet transfusion. His platelets were a bit low yesterday (48) and in any event there is concern that they are not functioning properly. Then a hematologist did the bone marrow aspirate. Next a general surgeon came in and inserted the central line (a double hickman). It will be used to give him drugs and blood products intravenously and to draw blood samples. Finally the ENT doctor came and removed his adenoids and inserted tubes in his ears. Everything went like clockwork except that the tubes made his ears bleed quite a bit and there was some concern that his blood wasn't clotting so they gave him something to help make his platelets sticky.
He will hopefully just be in hospital tonight. He seems ok but really tired. He took a long nap after the procedure so we didn't make it upstairs till after 5. Then he napped some more and finally ate supper around 7:30. He is settling down to sleep now but they have to check his vitals every four hours so it will be a long night.
Thanks to everyone who has wished us well and kept us in their thoughts. More this weekend,
Mary Ellen
He will hopefully just be in hospital tonight. He seems ok but really tired. He took a long nap after the procedure so we didn't make it upstairs till after 5. Then he napped some more and finally ate supper around 7:30. He is settling down to sleep now but they have to check his vitals every four hours so it will be a long night.
Thanks to everyone who has wished us well and kept us in their thoughts. More this weekend,
Mary Ellen
Wednesday, June 23, 2010
The night before
Malcolm's surgery is tomorrow. He will have a platelet transfusion, have his adenoids removed, may have tubes put in his ears and will have a bone marrow aspiration. It will all likely take a couple of hours. We expect he will be kept in the hospital overnight and we hope to come home Friday morning.
We were expecting chemo to start next Monday but that is now up in the air. It is looking more likely to be next Tuesday or Wednesday but we expect that will be confirmed tomorrow.
We have learned that he will require six courses of chemotherapy which means at least 5.5 months in the hospital. We hope that he can come home for a few days each month. Jan's parents have arrived and are already a great help.
Wish us well tomorrow!
ps at some point I will figure out how to upload pictures and will post a few recent shots of Malcolm...
We were expecting chemo to start next Monday but that is now up in the air. It is looking more likely to be next Tuesday or Wednesday but we expect that will be confirmed tomorrow.
We have learned that he will require six courses of chemotherapy which means at least 5.5 months in the hospital. We hope that he can come home for a few days each month. Jan's parents have arrived and are already a great help.
Wish us well tomorrow!
ps at some point I will figure out how to upload pictures and will post a few recent shots of Malcolm...
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
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
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