Appointments

Malcolm continues to do well. His platelets were 78 and hemoglobin still 88. His ANC was 208 so not much change in anything since yesterday. We are not sure why they want to do a CBC every single day but we are back to unpleasant finger pokes first thing every morning. His fingers are starting to get pretty scarred again.

Malcolm is getting lots of support on the developmental side this month as we begin the transition to permanent outpatient status. His speech therapist dropped by to see him briefly last week and she will give him a full assessment sometime in the next couple of weeks. She has been very proactive in providing advice and strategies to encourage his communication. We will really miss her - she only does inpatients so in January we will transition to someone else.

We had a session with Malcolm's occupational therapist today and she does not have any concerns with his development, although the visit was somewhat of a disappointment. We had not seen her for over six months and I was expecting a more in-depth assessment than she gave and some new advice and suggestions on what to be working on and what to be emphasizing in his play but she really had very little to say. We will continue to be followed by her every couple of months so hopefully next time is a bit more productive or I may stop taking him for a while. In the past she has been more helpful so not sure what was going on today.

We are seeing his physiotherapist on Wednesday for a full assessment and it will be the last time we see her as she only sees inpatients. We will also really miss her as she has been so great with wonderful advice and encouragement. I expect Malcolm will be followed by physio every few months until he has mastered things like running, climbing stairs (on his feet) and riding a tricycle.

We also saw Malcolm's early interventionist last week and she is very pleased with his continued progress despite his illness and treatment. She will help to co-ordinate some of the appointments once he is outpatient again and make sure he is seeing everyone he should be seeing.

So there has been lots happening on that front. Malcolm also has his routine six month eye checkup tomorrow. People with Ds are at increased risk of developing a number of different eye disorders and diseases so they are regularly screened from six months of age onwards. We have no concerns with his eyesight so are not expecting anything to be found tomorrow.

It is nice to get as many appointments as possible out of the way while we are inpatient so that we don't have to come here too much in January. Malcolm continues to be happy energetic and, unfortunately, has discovered that he can push open doors to patient rooms even if they are closed so we must watch him very carefully when he walks down the hall now. Not everyone is happy to have a smiling, drooling, armwaving, noisy two year old burst into their room unexpectedly...

Mary Ellen

So far, so good

Malcolm's platelets were 20 yesterday so they did a transfusion and they were up to 96 today. His hemoglobin is holding steady at 89 yesterday and 88 today. His ANC was 580 yesterday and 246 today. We are expecting his ANC to fall to zero soon and stay very low for at least a couple of weeks. Basically, all of his counts are falling because of the effects of the first dose of chemo given on the first two days of this round - the effects of the second dose of chemo will kick in later this week.

Malcolm is doing well with lots of energy. He did develop a diaper rash that requires some medicated cream. The cream seems to be helping and his fluconozole started again this morning, which will also help clear it up. He had been off it for over a week as it potentially interferes with the chemo so he typically stops it 24 hours before chemo starts and stays off it until at least 48 hours after chemo is done. We continue to rinse his mouth with chlorohexidene and so far no mouth sores but he is at higher risk of those this month as well.

So far, so good.

Mary Ellen

Last chemo infusion

Malcolm has been doing well. He had his last IV infusion of chemo this morning (he has had four three hour infusions again this week)! He gets a shot in his leg of the L-asparginase at noon and then that's it for chemo this round. Next round is all just injections into his spine so he days of being hooked up to a pole are drawing to a close.

Malcolm's counts have generally been falling. His hemoglobin was 98 yesterday and 88 today. His platelets were 65 yesterday and 29 today so he may need a transfusion within the next couple of days. His ANC has been bouncing around - it was 247 two days ago but was 1,536 yesterday and today was 758. We expect it to drop to over the next few days.

Malcolm has been tolerating his chemo really well again - his appetite has dropped off a bit but he is still eating something at most meals and he has been drinking his milk really well. His energy level has been great as well. The chemo this week has resulted in a diaper rash but hopefully that will resolve once the chemo has worked it way through his system (48 hours from now).

Donovan has been visiting the hospital quite a bit and has really been enjoying board games - there are many, many board games to choose from so we are learning some new ones as well!

Mary Ellen

Bloodwork

Malcolm had bloodwork today. His hemoglobin is 108, platelets 212 and ANC 576. He continues to do well.

Mary Ellen

Doing well

Jan and Donovan arrived yesterday morning and I went downstairs for a few minutes. I came back into the playroom and this was the happy sight that greeted me - so nice to see all of my boys having a nice time together. Donovan has a lot of fun at the hospital playing games in the playroom and, more recently, being permitted to watch a Thomas the Train DVD in Malcolm's room while they eat lunch. Malcolm is always very animated when he sees Donovan and tends to eat his lunch better if he eats it with his brother.

The parade was big excitement for the boys last night and Donovan was very excited to see Santa Claus at the end. It rained quite hard just before the parade but luckily the rain stopped and we were able to sit outside and watch it.

Malcolm is having a good day today - happy, energetic and eating well. Hopefully he continues to feel so well for the rest of his hospital stay!

Mary Ellen

Course one, round 5 done

We are done the first course of round 5. He has had four three-hour infusions of the high concentration cytarabine and one injection of the L-asparaginase. He will have a second identical course starting next Wednesday. He was not hungry yesterday and had a low-grade fever in the evening but some Tylenol really perked him up. He seems back to his usual happy, energetic self today. We're not entirely sure why they want to keep us in hospital till next Wednesday - his counts were all good yesterday at 105 for hemoglobin, 324 for platelets and over 5,600 for his ANC! So there is no concern of neutropenic fever for at least a few days. They are not even checking any bloodwork this weekend...

The unit is beyond full. Some patients have been moved temporarily to the seventh floor (very disruptive and distressing for these patients and families) and they have converted one of the patient rooms that was being used as an office back to a patient room. It is unclear why there is this unprecedented surge in pediatric cancer patients but everyone is coping as best they can - nurses are very taxed, doctors are spending extra time on the unit and it seems very hectic - a far cry from the summer where there were only a half dozen patients on the whole floor!

Tonight Halifax's Santa Claus parade goes right by the hospital and a special section with seating for inpatients and their families will be set up so we are going to watch it - fun for the whole family.

Mary Ellen

Twins

Last week, Donovan wanted he and Malcolm to dress up as "twins". I have matching jeans and a T-shirt for them so got them dressed - Donovan was quite thrilled. I don't think Malcolm noticed. Donovan had fun making funny faces for the camera and Malcolm, as usual, enjoyed playing with his big brother.

The fifth round is underway. Malcolm is getting a very high dose of one of the chemo drugs (Ara-C, also known as cytarabine). He will get 15 times as much as he did in any of the previous rounds. The good news is that he only needs to be hooked up for three hours at a time twice a day for two days this week and two next to receive it. He will also receive a couple of injections of another drug, L-Asparaginase. He has received two three hour doses already and it does not seem to make him feel ill at all so that is really great. He has lots of energy and a decent appetite.

My computer is broken so it may take me even longer than usual to respond to emails but that does not mean that I don't enjoy receiving them!

Many thanks to everyone who has made us food recently - it has been very helpful.

Mary Ellen