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

Fun in the sun

Malcolm's ANC was 205 today. Platelets were up slightly to 33 and hemoglobin was 85. It is possible that his platelets and hemoglobin counts are starting to recover - we will see over the next couple of days.

I forgot to report that the doctors discussed the issue of whether to take another bone marrow sample at the start of next treatment. They have decided it is unnecessary as it would be unlikely to yield new information. This was good news as the previous procedure caused Malcolm a lot of pain. It is unclear whether they will take a bone marrow sample at the end of the fourth round (the end of what they call the "induction" phase) or whether they will wait until the very end of treatment.

Donovan visited in the morning and afternoon and we spent most of the time in the playgarden. They had ice cream with special toppings in the afternoon so Donovan had a great time eating that. He also got his picture taken with the Canada Games torch which was visiting the IWK today, and got a special picture painted on his leg by a face painting artist. They have had several special events in the playgarden lately that have been great fun for the boys, and the weather has been perfect lately.

Donovan also stopped by briefly this evening with his dad to show off his soccer medal that he received at the end of soccer tonight. It was nice to see so much of him today.

Mary Ellen

Hovering

Malcolm's ANC has not been behaving. Rather than continuing to fall, it rose on the weekend. On Saturday it was very close to 500 so we actually got to go home for a few hours on a day pass! Sunday and today it has been hovering around 400. It is normal for it to take longer to bottom out at zero with each round of treatment but it is frustrating because it means that we will likely have to spend more time in hospital and will have fewer days at home before the next treatment - though we will see how it goes. The good news is that he is still feeling really well - no fevers or sickness. He is probably the most active, well-looking child in this place...

After the platelet transfusion on Friday his platelets rose to 75 but they were back down to 29 today. I am hoping for another transfusion tomorrow as he has a lot of bruises on his forehead now. His hemoglobin is 84 so still well above the transfusion threshold of 70.

We are looking forward to a visit from Donovan tomorrow morning.

Mary Ellen

Support

I wanted to take some time to share the many ways that people have been supportive of us while Malcolm is undergoing treatment. Support has come in many forms and we appreciate all of them.

At my work many people have wished me well and I get emails from time to time from those following the blog or hearing about Malcolm's progress from those that do. Some coworkers who also have young kids have offered to take Donovan for playdates.

At Jan's work people ask him how things or going or comment to him that they have read the blog. Some very kind coworkers have organized a schedule to make food every Wednesday and deliver it to Jan. So each week we get a special and delicious supper delivered!

At St John's United we have enjoyed several lovely meals delivered to our house and have had several offers of playdates for Malcolm. We know also that people are thinking of us and keeping us in their prayers. Linda is a regular visitor at the hospital.

At Allegro, the boys' daycare, staff have been wonderful in working to provide the understanding and emotional support that Donovan needs. Some of Malcolm's and Donovan's teachers have visited. Staff follow Malcolm's progress on the blog and often ask after him, and they sent a wonderful fruit basket and balloon. Parents of other kids at the daycare have sent food, gifts and well wishes.

We have the support of friends here in Halifax who have offered to have Donovan over for playdates, visit us in the hospital, make us food and listen to our day to day worries and concerns.

Jan's parents have moved to Halifax for the duration of Malcolm's treatment. They take care of Donovan at least two days a week, prepare lots of food and help entertain Malcolm. They have also tackled the weeds growing in my garden and are always willing to deliver whatever we may need to the hospital.

My parents visited for 10 days in July and then took Donovan to the farm for two weeks. My two younger brothers, Greg and David and Jordana and Beth helped to make sure that Donovan had a really fun, safe trip. Donovan loved playing with his cousin Lily and helping everyone out. I know that extended family and neighbours also helped make Donovan's visit really special.

In fact, neighbours, friends and extended family back home keep Malcolm and our family in their thoughts and prayers, as do Jan's extended family and family friends. Jan and I have heard from several old friends who have sent a quick email or comment to let us know they are thinking of us.

And of course, there are many staff and volunteers at the IWK who always have a smile for us, a word of encouragement or a willingness to try to make his stay here better.

All of this support is so deeply felt and so much appreciated. We hope we will continue to feel it as we get through Malcolm's treatment. We look forward to continued emails, phone call, visits and gifts of food. We are truly lucky to have such wonderful support in so many different ways.

Mary Ellen

Transfusion

Malcolm's platelets were 24 today. Initially they were not going to do a transfusion because they typically don't do it until the bloodwork shows a number of 20 or less. However, I know from last round that if his platelets drop below 20 he will all of a sudden be sporting several large bruises on his forehead that take weeks to fade. He already has a number of small bruises on his forehead from yesterday and today. So the doctor very kindly agreed to order the transfusion for today instead of waiting. His other numbers were not changed much - hemoglobin was 97 and ANC was over 300.

Mary Ellen

Falling

All of Malcolm's counts were definitely on their way down today. Platelets were 74 and hemoglobin was 97. His ANC was 264 so no more day passes. We are entering the nerve-wracking phase where he will be very susceptible to fevers and infection. It would be nice to get through it with no fever this time!

Mary Ellen

Good news!

We finally have the bone marrow results back. There are actually very few cells that may indicate disease is still present. The chemotherapy treatment can actually cause cells to look like this so it is impossible to say at this point whether the few unusual-looking cells are caused by disease or the treatment itself. So this is great news! Given this new information, we are not sure whether they will do another bone marrow procedure at the start of next round or not. It is unclear whether any different result would be found. The doctors will discuss it at their weekly Friday meeting and decide. So overall very good results - the chemo is definitely working.

Mary Ellen

Malcolm has been doing really well the past couple of days. His counts are starting to fall but he has a better appetite than last week and has more energy. He is only hooked up for nap and at night and since he is done his mandatory anti-nausea medication (Zofran is given regularly during chemo and for at least 24 hours afterwards) hopefully he will only need to be hooked up during nap today and can be free tonight (he needs to be hooked up a bit each day because they want him to get a lot of fluid every day).

We have been out on day passes every day since Saturday and will get one again today as his ANC is still 800 (the cutoff for a pass is 500). The pass allows us to go out for 4-6 hours. We go out after his nap so that we can have some playtime and then supper at home. It has been nice for everyone but especially Donovan. His platelets are still 111 and hemoglobin is 105 so likely no need for any transfusions for at least a few more days. Hopefully his counts stay high enough that we can go out again tomorrow.

The boys are out doing activities in the playgarden so I will go join in the fun now. The playgarden is a wonderful perk for kids and families here at the hospital.

Mary Ellen

Photos

The first photo shows Malcolm with his girlfriends, Zoe and Riann, from Ontario who visited on the August long weekend. The next two photos show my five nieces in Ontario: Evalyn (with Grandma Lee and Donovan), Anna, Ella, Lucy and Lily. We miss you! The final photo was taken the day before Malcolm started his second round of treatment, in our backyard. They were just being brothers and having fun playing together in the sandbox (Donovan tries to be bossy but Malcolm usually has his own ideas of what to do!).

Mary Ellen

Done the second round

Malcolm finished his second round of chemo today around 2:30. We were home by 3:30 and had a nice supper at home with Jan's parents. Malcolm was so happy to not only be unhooked but to be outside in his own backyard! He had tons of energy and even ate a bit of supper (yogurt and multigrain crackers - certainly better than a couple of little rice crackers which is basically all he's been eating all week).

Donovan spent quite a bit of time at the hospital today. He has been missing us and so it was especially great for him to have a "normal" family meal together. Fingers crossed that we can go home for a few hours for each of the next few days, until his ANC drops to below 500 again.

We spoke with a different doctor today regarding his bone marrow results. Like us, he had more or less been expecting that Malcolm's marrow might be clear after the first round of treatment (because the disease was caught so early and there were so few cancerous cells to begin with) but he reiterated the other doctor's view that it is not unusual for it to take more than one round to get rid of any visible signs of the disease. He indicated that he expects the marrow to look clear after this round. We expect to have the final bone marrow results on Monday which will tell us more precisely how much the marrow has improved so we will hope it shows a significant improvement.

Mary Ellen

Feeling better

Malcolm is feeling quite a bit better. He had a rough day yesterday until after supper, when he seemed less sore. He woke up this morning with only a bit of stiffness and that seemed to be gone by mid-morning. His energy level is also quite a bit better so he was eager to get out of the room and crawl around. We have preliminary results from his bone marrow and the news is good though not as good as we had hoped for. The disease is definitely responding to the drugs but it is not entirely gone so indications are he is not in remission yet. Apparently this is not unusual. I think he will have another bone marrow biopsy at the start of next round. The first four rounds of chemo are "induction" and there isn't huge concern if remission is not achieved right away but there would be concern if it is not achieved by the end of the fourth round. But Malcolm is well on his way. We expect to have more detailed results within the next few days. In the meantime, we are happy that Malcolm is behaving more like his usual self.

Mary Ellen

One day at a time

Malcolm had a rough night last night. We tried giving him gravol (in case his stomach was bothering him and in hopes it would help him stay asleep) but at about 1:30am resorted to morphine. It seemed like the puncture wound from the bone marrow procedure was really hurting him. The morphine seemed to help initially but then he was awake again shortly after three. He finally settled for a good sleep just before 4, and then he slept till 11am! He woke up briefly a couple of times but then dozed off again. He did not have much energy or appetite after he woke up and he napped for three hours later this afternoon. He still didn't have much energy tonight, and his hip is still bothering him as he cries if we try to get him to stand up. He did not even try to stand or crawl today which is so out of character.

So I think that the chemo drugs are bothering him more this time as well as being sore from the procedure. Hopefully the soreness will fade more over the next couple of days and perhaps that will help him to feel better generally.

No word on the bone marrow results but we assume that means everything is fine. We will confirm tomorrow (we did not see a doctor today, likely because he was sleeping when they were available).

Malcolm perked up a bit when his big brother and daddy came to visit for supper. Donovan was excited to see Malcolm's new room and visit the playroom again. He is still missing the farm, where he had such a great visit.

Mary Ellen

First day, round two

Everything is going ok. We have a different room which is quite nice (space for a larger play area than last time) but in a different hallway than the kitchen which will make it virtually impossible to use the kitchen while Malcolm is hooked up and I'm here by myself. I may have Jan smuggle in a tea kettle for me - we are not supposed to bring in any appliances to the room (so if you work at the IWK, please pretend you did not read this...) but it would be nice to be able to make a hot cup of tea in the mornings.

Malcolm was very sore from the bone marrow procedure. Apparently it was difficult to draw out the marrow today. This does not mean anything in terms of the marrow's health but the doctor had to "dig around" to be able to draw out enough so that is likely why his hip is sore. He had trouble getting to sleep and we sat in the rocking chair for quite a while but he is peaceful now and, fingers crossed, will remain that way for the rest of the night. We will have the bone marrow results sometime tomorrow but expect everything to look fine.

Mary Ellen

Tomorrow is a go

Tomorrow (Tuesday) we start round 2. Malcolm's ANC was 1345 today, well above the 1000 threshold needed to start. His white cell count was 4.8, hemoglobin was 112 and platelets were 241. Tomorrow, he will be sedated for both a bone marrow biopsy and his next intrathecal (spinal injection) of chemo. Later in the afternoon, after he has recovered, he will begin the 96 hour IV infusion of chemo drugs. So we will be stuck on the 6th floor all week. Visitors will be welcome.

The bone marrow biopsy should reveal that any visible evidence of the disease is gone. The next five rounds of chemo are to make sure that every last bit of it is gone so that it does not recur.

Wish us well tomorrow,

Mary Ellen

Still going strong

Malcolm continues to do well and seems more like his old self. He is enjoying eating finger foods again and, other than sleeping a bit more than usual, his behaviour seems back to normal. For the first week home from the hospital he was unnaturally content - he would go the entire day without fussing about anything! While this may sound like a dream come true it was a bit unsettling as that is not normal toddler behaviour. He is always a very good little boy but he is back to letting me know when he is frustrated or unhappy about something.

We had a major breakthrough on the communication front today. Malcolm used two signs in combination today - three times in a row! He signed "more milk" instead of just "more" or "milk". This is excellent progress and very exciting that he is starting to put words together - and he's not even 2 years old yet!

Malcolm felt a bit warm yesterday and the day before so I kept taking his temperature. It hovered around 37 and was as high as 37.4, which is definitely a bit on the warm side for him, but it never spiked to a fever and he seems (fingers crossed) over it now so that is good. Hopefully it continues to be smooth sailing until next Tuesday.

Mary Ellen

Home for longer

We have another week's reprieve from the hospital. Malcolm's ANC actually dropped to 570! It generally needs to be 1000 to start the next round of chemo (or in certain circumstances, they may start if it is above 750). His overall white blood cell count was about the same as last week (3.8), but the relative numbers of the different types of white cells shifted. So he had fewer "neutros", which are counted in the ANC, and more "lymphs", which are not. The prevailing theory is that he has been at the tail end of a virus which often causes this shift to producing lymphs instead of neutros. It is possible that the virus was behind his fevers when his ANC was really low. His platelets were 319 (normal) and hemoglobin was 103 (just under normal).

So chemo will more than likely start next Tuesday. I think it is not uncommon for his counts to be too low at this point, but it would be much less common in another week. I think everyone was a bit surprised (I know I was) that his ANC was so low today since it was bouncing up rapidly but this virus theory seems to account for it.

So for those of you planning to visit in the hospital this week, feel free to stop by the house or postpone your visit till next week. We have been missing Donovan like mad (he is still at the farm) but enjoying a visit from out of town friends. Malcolm has been extremely content since he has come home and has been catching up on sleep.

Mary Ellen