Still down

Malcolm's ANC is still zero so likely another couple of days in here at minimum. He had rough night last night as he was very restless and at one point was awake for over an hour - unable to settle down again and drift off. He drank quite a bit of milk but did not want anything to eat. It may have been his teeth but he was not chewing on his fingers much so hard to say. This morning he had his echo and the heart clinic nurse who did it said it looks good. Then Malcolm had to have two splinters removed from his hand that I noticed this morning - he must have gotten them from the side of the sandbox in the playgarden last night. So that was painful for him.

Platelets were 473 and hemoglobin 91 so hopefully the ANC starts to rise soon.

Mary Ellen

Still down

Malcolm's ANC remains at zero. Other components of his white blood cells are recovering so it is only a matter of time. There is no concern that the ANC is taking a long time to rise - some rounds it will take longer than others and the reasons for this are not clearly understood but it does not make any difference to the final outcome. So the only concern is that he remains very susceptible to infections while it is so low. We are hopeful that his ANC will start rising tomorrow so that we can go home Wednesday or Thursday. Hemoglobin is 85 and platelets are a whopping 468!

Malcolm is scheduled for an echo (ultrasound of his heart) either tomorrow or Wednesday. They do one at the end of each round to ensure there are no short term impacts on his heart. One of the more serious side effects of the treatment he's on is heart damage, as the drugs are particularly toxic to the heart. Damage can occur in the short term, though this is quite rare and is more likely to occur in children who have serious heart defects/damage, which Malcolm does not have. However, if heart damage is occurring they would consider changing his treatment. It is more likely that heart damage will become apparent over the long term (in a decade or two) so he will be monitored at least annually, likely for the rest of his life. But even the long term effects are relatively rare.

It is very hot here in Halifax - we were out for a bit this morning but will remain indoors until this evening when it's cooler.

Mary Ellen

Still not up

Malcolm's ANC was still zero today. His hemoglobin was 82. His platelets were a roaring 427 which is actually a bit above the normal range (150-400) - this is amazing!

Donovan enjoyed the camping trip with his Dad. I spent most of the afternoon and evening with Donovan at home - we got out his little swimming pool and the sprinkler so that was great fun.

Mary Ellen

More down than up

Malcolm's platelets are way up to over 300 but his hemoglobin fell to 85 and his ANC is still zero. We continue to be hopeful the ANC will recover soon and then shoot up quickly as it did last time. The really great thing is that he continues to feel well with no fever.

Donovan and Jan were in for a quick visit this morning and then they were off camping! This is a special treat for Donovan and a nice break for Jan. Here's hoping they have a really fun time - the weather is certainly cooperating as we are having a last blast of summer.

Our congratulations go out to our cousin James and his new wife Amanda on their wedding day today.

Mary Ellen

Up and down

Malcolm's platelets and hemoglobin were up significantly to 227 and 94 but his ANC fell to zero! The doctor is still speculating that his ANC will all of a sudden jump up. We are very hopeful that Malcolm will be ready to go home on Monday. That would give us a full week at home before the start of next treatment. Still fever free and counting down the days...

Mary Ellen

No more bruising

Malcolm's platelets zoomed up to 117! So no more new bruises, and the ones he has are fading fast. His hemoglobin was steady at 82 so he will almost certainly avoid needing a transfusion for that this round. His ANC was down a bit to 22 but everyone here is expecting that it will start to rise very soon. It looks like (knock on wood) we will avoid fevers this round but we still have a few days before we are out of the woods so too early to celebrate.

It was a sad day today because the playgarden is closing its supervised hours so no more fun activities provided out there for the boys. I can still take them out and they may start offering times where they at least open up the little cottage and the shed where they store all the toys, which would be nice.

The playgarden is a wonderful place and the only place we can go that is actually outside the hospital. Unfortunately, it faced a huge cut to its staff budget (about 50% fewer staff than last year) and there are no funds to provide for anyone to maintain its hours now that summer is over. It is too bad that the hospital chose to cut a service that is so beneficial to patients and families in a situation like ours - hopefully they will rethink their decision at some point and restore some funding. In meantime, we will make do with what we have and hope that we can leave soon for a much needed break at home.

Mary Ellen

Platelets up

Malcolm's platelets rose to 49 today. Hemoglobin is down slightly to 82 and ANC is down to 68. The doctor mentioned that platelets are often the last count to recover but for Malcolm they seem to be the first - they were first last round as well. The doctor also speculated that his ANC may start to rise soon as well which would be great - perhaps we won't need to stay in hospital for as long as we were anticipating this round...

Mary Ellen