Home already!

Malcolm's ANC jumped to 760, miles above the 500 threshold needed to go home. So we finished packing up and were home by noon. Initially they were intending to start his next treatment Tuesday but they are delaying until Wednesday because of the holiday Monday. So we have almost a week at home! Malcolm was very happy to get home and had a refreshing three hour nap right after lunch. Then he was very content to play with his toys that he has not seen in a while.

We miss Donovan but he continues to have fun at the farm. A big thank you to everyone who is ensuring that he has a really wonderful time. He has been too busy to talk to me for more than about 10 seconds each day I have called so clearly he really is enjoying himself. We certainly all miss him here though!

Mary Ellen

On the way up

Malcolm's ANC is on its way up! Today it was 132. His platelets were 130 which is the highest they have been in almost a year. His hemoglobin was 89. These counts should generally continue to trend upwards (rise) until his next treatment (likely to start next Tuesday) but they may fluctuate somewhat from day to day. We are still hopeful we can go home later this week.

Malcolm's energy level has been improving. Yesterday and this morning he was very energetic and eating and drinking much better but this afternoon and evening he was much quieter. His nurse says it is normal for energy levels to fluctuate quite a bit as his counts rise. He continues to receive his cocktail of IV antibiotics every six hours but hopefully they will be discontinued sometime in the next couple of days if he continues to do well. Yesterday and today he was off his IV pole in the morning and afternoon for a couple of hours when not receiving any medications. It is such a relief as he is free to burn off energy without fear of injuring himself (by pulling out his line) and then it is easier to keep him quiet when he goes back on the pole.

We can no longer ignore the fact that Malcolm is losing his hair. It is noticeably thinner and tonight he had hair all over his high chair tray as he was eating his supper (or more accurately, as he was throwing his intended supper all over the floor while at the same time smearing it all over his face and head). His hair still looks ok in pictures and likely to people who do not know him well. Now that his counts are increasing, his hair loss may stop or slow down until next treatment.

Donovan is having great fun on the farm and Malcolm has been enjoying extra attention from Grama and Grampa Rainey and his Dad. It is a nice break for everyone.

Mary Ellen

Open for visitors

In the photos above, Malcolm is enjoying the playroom sitting in a box and playing with Grandma Lee. Thank goodness for the playroom!

Yesterday Malcolm had three very special visitors. Three of his teachers from his daycare, Allegro, came by as well as one of Malcolm's little buddies, Harry. Unfortunately I did not get any photos but Malcolm had a really wonderful time cuddling with his former caregivers, singing songs and showing off his steps. He was very animated and you could tell he just loved seeing some familiar faces.

So for anyone local, don't be afraid to stop by - we are open for visitors. The only caveat is that if you or anyone in your household is unwell, you should postpone your visit until feeling better.

I also wanted to say thank you to everyone who has given us food and gifts - everything is so very much appreciated. Also appreciated are emails and comments left on this blog - it is easy to feel disconnected from the world outside when we spend so much time here, and rest assured that while I may not be very good at replying to messages right now we certainly love to receive them.

Mary Ellen

Fever free again

Malcolm spiked one more fever Friday night, but he was not so upset as he was with the earlier fevers and it subsided after one dose of Tylenol (and, of course, they continue to pump him full of antibiotics). However, yesterday and today he is eating more and his energy is much higher. His ANC is still zero today but his platelets have risen to 100! His hemoglobin is also up to 91. The doctor is confident that his counts are now rising so the ANC should start to increase soon. If his ANC rises to 500 and Malcolm is feeling well, they will discharge him for a few days before they begin the next round (which typically starts when his ANC reaches 750).

Donovan left with Grandma Lee yesterday for the farm. We miss him already!

Mary Ellen

Update

Malcolm's fever spiked a couple of times Tuesday night but he has been fever free since then. They continue to pump him full of antibiotics (three different kinds) through the IV and he was hooked up all day yesterday for fluids. Today he was permitted to be off the IV for a few hours after his nap. He has not really been himself - not eating much, lower energy - but this could be an after-effect of the fever or be due to his counts being so low (his ANC was 0 again yesterday and he had another platelet transfusion). If his appetite does not pick up tomorrow we will likely start feeding him pediasure to try to get him to ingest more calories - they do not want him to lose weight. The blood cultures have not shown anything so that is good.

Malcolm had an echo (ie ultrasound) of his heart first thing this morning and we have not heard anything so assume everything looks fine. He will have an echo after each round of chemo as one of the more serious (but thankfully quite rare) side effects is cardiotoxicity and either immediate or long term damage to the heart can result.

Donovan and Grandma and Grandpa Lee visited today. Grandpa Lee had to leave midafternoon to catch his flight home. Malcolm really perks up when Donovan is around - he is a great motivator for Malcolm. Mom was commenting that it is obvious how much Malcolm loves his big brother. Malcolm will really miss him when Donovan goes on his trip to the farm.

Mary Ellen

First fever

Malcolm has a fever today. I knew as soon as I saw him this morning that he wasn't feeling well. I have been sleeping at home the last several nights. I put Malcolm to bed and he sleeps through till morning. I arrive by 6:45am and if he wakes before 6:45am, the nurses get him up and bring him in the stroller to hang out at the nurses' station with them. That's where I found him this morning.

I took him back to the room and he was content to sit in the armchair with me and watch the news (very unusual for my active boy) and by 7:15 I could tell he was feeling warmer than usual so I called a nurse to take his temp and it was 38. An official temp is at least 38.3 or 38 to 38.2 twice in an hour. She came back in a half hour to check again and it was 38.4. She quickly got her supplies for drawing blood (to be cultured) and immediately after he was hooked up to IV antibiotics. He is hooked up for a few hours this morning and will be hooked up periodically to get more drugs over the next several days.

Some Tylenol perked him up and he is happy playing now so likely not a serious bacterial infection but the cultures will confirm that. Fevers are very common when his ANC is so low so this is not unexpected but of course not really desirable either. However, we are happy that he seems to be doing well and does not appear to be really sick.On another note, below is a short piece I have been meaning to share. I found it on the blog of another mother whose child had the same type of cancer as Malcolm. You can read about Carey and her family at http://www.cbranam.blogspot.com/

A Pair of Shoes

I am wearing a pair of shoes.They are ugly shoes.

Uncomfortable shoes.I hate my shoes.

Each day I wear them, and each day I wish I had another pair.

Some days my shoes hurt so bad that I do not think I can take another step.

Yet, I continue to wear them.

I get funny looks wearing these shoes.

I can tell in others eyes that they are glad they are my shoes and not theirs.

They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable.

To truly understand these shoes you must walk in them.

But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.

There are many pairs in this world.

Some women ache daily as they try and walk in them.

Some have learned how to walk in them so they don't hurt quite as much.

Some have worn the shoes so long that days will go by before they think about how much they hurt.

No woman deserves to wear these shoes.

Yet, because of these shoes I am a stronger woman.

These shoes have given me the strength to face anything.

They have made me who I am.

I will forever walk in the shoes of a woman who has a child with cancer.

*Author Unknown*

Still going well....

Malcolm continues to do well. He has lots of energy and is eating well. His platelets were 12 yesterday so he had another platelet transfusion and they were up to 90 today. His hemoglobin was 69 today so they will do a red cell transfusion this afternoon. That will take about four hours but thankfully part of it while occur over naptime so hopefully only a couple of hours awake with the dreaded IV pole. The doctor and nurses can hardly believe that his hemoglobin is so low as Malcolm is so energetic. Often when it falls this low kids have less energy but Malcolm is unstoppable.

Malcolm's ANC was 0 yesterday and is 29 today so very low but no sign of a fever or infection so that is a good thing. Fingers crossed he continues to do so well. They will do a bone marrow biopsy in a couple of weeks to ensure that all of the cancerous cells are gone and that he is in remission and then they will start the next treatment.

Malcolm had his followup hearing and ENT appointment today (followup to the surgery to have his adenoids removed and tubes put in his ears). Everything is fine except that one tube is a bit plugged so he has some drops to help that.

On Friday there were a couple of NASCAR racing cars in the playgarden and Malcolm got his picture taken with the cars and drivers. There are some great pictures at:
http://www.checkerstowreckers.com/news%2010/jul/jul17_iwk/index.html
(scroll till near the end).


We had a hot and sunny weekend and Malcolm was able to get out lots to the playgarden. He is enjoying his visit with his Grandma and Grandpa Lee and he is having playtime right now with Grama and Grampa Rainey.

Mary Ellen

Addendum....

My biggest critic (Jan) has suggested that I do a better job a) captioning or b) describing the photos I post. It is not easy to insert captions in the blog format so option b) it is. For those who do not know me, I am not in either photo (I am unlikely to appear on this blog). In the first photo below Malcolm is swinging with one of the childlife workers in the playgarden. In the second photo, Donovan is playing in the sandbox with one of the playgarden volunteers. Both boys love all the individual attention they get here. Malcolm continues to feel well and had a great day yesterday.

Mary Ellen

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