Malcolm has been doing well. After the platelet transfusion his platelet count jumped to 62. Because the effect of the chemo drugs are still making his counts fall, it is possible he will need another platelet transfusion sometime this weekend. His ANC has been below 500 but has not bottomed out yet. His hemoglobin has stayed around 81. There have been no signs of fever or illness so far and he seems to have more energy. He must stay at the hospital at all times now in case a fever spikes so no more day passes for a while.

My parents arrived Wednesday evening. They brought Donovan to the hospital and stayed all day yesterday. It was a perfect summer's day - sunny and warm with a bit of a breeze. Malcolm and Donovan played all morning in the playgarden and Malcolm rejoined Donovan after his nap. They both love the one on one attention they get from staff and volunteers in the garden.

Malcolm is spending today with his Daddy and other grandparents. Hopefully each day continues to be uneventful. Thank you to everyone who has been emailing us or commenting on the blog. It is wonderful to feel like we are staying connected to the outside world.

Mary Ellen

First transfusion

Malcolm is doing great. His eating is still a bit off but he is drinking well and has quite a bit of energy. He needed a platelet transfusion today. Platelets are the part of your blood that makes it clot. His platelets have been low since last fall, fluctuating between 30 and 124 (the normal range is 150 - 400). They were 42 when chemo started and yesterday were 20. They were 16 this morning before the transfusion and we will see what they are tomorrow - they will definitely be higher but each patient responds differently so difficult to predict how much higher. He may need a platelet transfusion after every round of chemo - this is very normal. They typically transfuse when the count drops below 20 as they try to avoid them dropping below 10. At below 10, they are at risk for internal bleeding, particularly in the brain.

His hemoglobin (red blood cells, which are responsible for carrying oxygen throughout the body) is also dropping and it is possible he will need a transfusion later this week. They were 90 today and they typically transfuse if they fall below 70 (the normal range is 105 to 135).

The most important count of all is his white blood count which indicates his immunity. They look at his Absolute Neutrophil Count (ANC) and consider anything above 1,500 to be ok (a neutrophil is a type of white blood cell). 1,500 to 1,000 would mean he is mildly neutropenic. Between 1,000 and 500 would mean he is moderately neutropenic and below 500 would mean he is severely neutropenic and at high risk for developing a life-threatening infection. His ANC was 1,000 today. He has been started on an antibiotic to help guard against fungal infections, which are common among neutropenic patients. He now has a special mouthrinse that I swab around his mouth four times a day to help prevent mouth sores, which are also very common. He will soon begin getting another antibiotic twice a week to help prevent bacterial infection.

He went home again yesterday and today after his nap on a day pass. It is so nice to be able to eat together as a family at home. I bring him back to the hospital at bedtime. He is hooked up to fluids while sleeping but is otherwise free of the dreaded IV pole. I believe the doctor intends to continue letting him go home for short periods until his ANC drops to around 500 (or unless he feels unwell). Fingers crossed he will be allowed to go home again tomorrow!

Mary Ellen

The slide

Here at the IWK there are many staff and volunteers that go out of their way to ensure that every child is having the best experience possible while in hospital. In the summer, the playgarden is open and staffed most days with many activities available for kids. Last week, Donovan and I were in the playgarden (Donovan had a great time painting and playing hide and seek). Malcolm was unable to leave the floor as he was hooked up to the IV pole so his grandparents were entertaining him in the playroom. I saw a small slide in the playgarden and immediately thought how great that would be for Malcolm as he loves to climb and there is nothing for him to climb when confined on the sixth floor. I mentioned this to one of the staff in the playgarden and asked if they knew if there was another similar slide around that he could borrow...

A couple of hours later, the same slide I saw outside was delivered, newly cleaned, to his room for Malcolm to enjoy as long as he needs it.

Malcolm loves playing on his slide (shown in a photo in one of my previous posts). He can climb to the top and swing one leg over and just needs a bit of help to get the other leg positioned under him. He loves it and I am happy that he can continue to get good exercise so he does not lose valuable muscle tone which takes so long build up. We are very grateful for all of the wonderful ways in which they help patients and their families cope while in hospital...

Mary Ellen

Done the first treatment

Malcolm finished his first chemo treatment this afternoon and he was allowed to come home for a couple of hours for supper! They have something called a "day pass" that a doctor may grant an inpatient to leave the hospital for a short time if it is deemed safe. Because his counts should not fall significantly for a few days he was allowed home. It was wonderful. Malcolm had so much fun enjoying his newfound freedom in his own home with his familiar toys and we ate outside on the deck, in the fresh air. I think it was also really reassuring for Donovan to have a (fairly) normal evening.

Donovan and Jan spent most of the day at the hospital with us and then we all came home together. At bedtime, Donovan and I dropped off Jan and Malcolm as Jan is giving me a break tonight. Malcolm will be hooked up to fluids while he sleeps for the next few days but hopefully will not need to be hooked up while awake - we must try to get him to drink more fluids to ensure this.

Mary Ellen

Settling in

Malcolm seems to have transitioned into the hospital without much trouble. The photos show him playing with Donovan in the playroom, climbing the slide in his room and a couple of other photos of his room. He seems to feel quite well though his energy is a bit lower than usual. They have supervised hours in the playroom each day and he has been fine with me leaving him there for an hour or so. Donovan loves visiting and we have found several activities for him in the playroom and outside in the playgarden. Malcolm really lights up and laughs a lot when Donovan comes too visit.

We have only one more day of chemo - it should be ended sometime tomorrow afternoon. Then hopefully he can be disconnected from the IV line when awake. They will continue to give him extra fluids through his line while he is sleeping for at least a few days to ensure the drugs get flushed from his system.

Mary Ellen

The start...

Chemo started today and everything went well. We were asked to arrive at what turned out to be a ridiculously early time (8:30am). They eventually hooked him up to IV and changed his dressing but for the most part we were left to settle in, which largely meant trying to distract Malcolm from thinking about food (he was not allowed to eat since the night before) but also gave me time to unpack everything. Around 1:30 they did the lumbar puncture, which only took about 10 minutes. They are very good to parents as they allow me to go into the procedures room and hold Malcolm until he falls asleep and then sit beside him in recovery until he wakes up (which took a while as he slept for at least an hour after the procedure).

At about 3:40pm, after he was eating and drinking, the nurse came and hooked him up to his intravenous chemo, which he will receive continuously for 96 hours. His IV line only allows him to get about two feet from the pole so for the next several days I (or some other willing family member or friend) must be within two feet of him unless he is strapped into something secure like a high chair. This is because someone needs to push the pole after him so that he does not snap the line. We cannot leave the sixth floor with the chemo drugs so we are basically confined to our room, the playroom and the hallways. So hopefully everything goes well and by Sunday I can take him further afield, as I'm sure we'll be wanting a change of scenery by then.

Jan stayed with us all day and left around 5:30 to take Donovan to soccer. Grama and Grampa Rainey were Malcolm's first official visitors as they came to play with him from about 6:30 - 7:30pm. He had no trouble settling to sleep tonight. Unfortunately they must wake him every four hours to check his vitals and change his diaper (because of the chemo drug).

For those of you in Halifax, this week would be a good week to visit. His counts (ie his immunity) will not drop until sometime next week so as long as you are feeling well feel free to come see us in our new digs.

Mary Ellen

Tomorrow is the start

Tomorrow chemo starts. Malcolm is doing well. He had the dressing on his central line changed on Friday because there was more oozing. His skin is getting raw from having it changed so much (it is made of a substance that really adheres to the skin). I have a feeling they will change it again tomorrow because there has been a bit more oozing. But the site itself is looking really good and seems to be healing well, which is the main thing. Tomorrow we must present ourselves at the inpatient unit at 8:30 am. We will be shown to our (Malcolm's) room and he will begin chemo. It is given by way of IV for 96 hours plus he needs to take one drug orally. Also, tomorrow around 1pm he will have a lumbar puncture (spinal tap or intrathecal injection are other terms that mean the same thing) to give him some chemo straight into his spine, and some of the spinal fluid will be obtained for testing. He will be sedated for that procedure so can have nothing to eat tomorrow morning.

We had a wonderful weekend. The weather was great here and we spent a lot of time outdoors. I did a few special things with Donovan - took him to a nearby beach yesterday, made some of his favourite foods, let him decorate some cupcakes, had some friends over to play. He helped pack some of Malcolm's toys this afternoon. Malcolm is doing great and taking more steps every day - he took six in a row on the weekend!

A special thank you to everyone who has wished us well by sending comments on this blog, emails to Jan or I, by making us food or giving us gifts, or offering to help with Donovan or other tasks. All of your support is greatly appreciated.

Wish us well tomorrow,

Mary Ellen