Not much change

Malcolm had another good day. His counts did not change much from yesterday - ANC was 603, hemoglobin 107 and platelets 32. He came home for supper again, which was nice. Earlier in the day, Donovan and I went shopping for hallowe'en candy and carved a pumpkin so we are all set for tomorrow - Donovan is very excited about this very special holiday.

Mary Ellen

Trick or treat

Today the hospital had a trick or treat route set up for kids - mainly in the outpatient areas on the first and second floors. Malcolm tried on a cow costume yesterday and it was super cute but it was extremely warm and fuzzy so today he went as a dalmatian puppy. Daddy came over for the big event. Unfortunately Malcolm was napping when the big group from the sixth floor went together but we went later on our own. Malcolm had fun and got lots of loot, most of which is more suitable for his big brother so Donovan got one treat bag already today. Donovan could not join us as his cold is still hanging on, though gradually improving.

Malcolm's ANC today was 679, hemoglobin was 105 and platelets were 51. Malcolm got to come home for supper tonight but we'll see if same applies for tomorrow. It is surprising to everyone that his counts are falling so slowly. We continue to hope his counts will recover quickly again and we will get out of hospital next week.

Mary Ellen

Hair update

We got to go on pass again. His ANC was 922, platelets were 79 and hemoglobin was 107. So things are now dropping. Hopefully we get at least one more pass before being locked up entirely. Jan and I both seem to be developing colds and Donovan still has a runny nose. We are keeping our fingers crossed that Malcolm does not get sick, or that if he does, that he does not get a fever. If he spikes a fever then he must receive IV antibiotics for at least 48 hours (and likely longer than that) while they run cultures to rule out any really serious infections. You may recall this happened in round one and he was hooked up for close to a week - not fun.

For those of you who have been reading this blog since the beginning, you may remember that in round one we were a bit depressed that Malcolm seemed to be losing quite a bit of hair and we were expecting him to go bald. However, you may have noticed that in photos he still seems to have quite a bit of hair. The truth is, he has not lost much since the first round. And we have let all his remaining hair grow quite long so it helps to hide the fact that it is quite thin. We are lucky in that his hair loss was uniform - for some kids it comes out in patches and they sometimes shave their head because it looks better than random bald patches. His hair has changed consistency - it is very dry and brittle, does not need to be washed much - and has really lightened up - we have had several nurses comment recently on how blond he has become. But we are now very hopeful, with only two rounds to go, that he will not go bald or need to have his head shaved - a small but welcome blessing.

Trick or treating is tomorrow here at the hospital - stay tuned for super cute photos.

Mary Ellen

And again

We were out on pass again this afternoon. Malcolm's counts are really not dropping much. Platelets were 109, hemoglobin was 109 and ANC was still 1073 - well above the 500 threshold to get a pass for a few hours. We are hopeful that we may be in hospital for an even shorter stay than last time (16 days). This would be great as the next round is much more intensive chemo and I do not think we will be allowed out of hospital at all.

The hospital does a special trick or treat event each year for patients. It will be Friday afternoon. Malcolm will be a cow or a dog - we looked through the costumes today (they have boxes and boxes of wonderful costumes of all sizes here for kids to use). If Donovan's cold is better, he can come too. He is very excited about his superhero costume that his Grandma Lee gave him. I showed it to him on Sunday and he put it on for three hours while he (literally) ran around. We ran to a park several blocks away to "test our skills" (his phrase, not mine) and then ran all the way home. He kept running as much as possible in the house till I made him take it off in an effort to settle him down for supper. He asks every day how long it will be till it's time for trick or treating!

Mary Ellen

Pass again

We were allowed out again for a few hours. We generally go home from about 4 to 7:30pm on daypass - it is very nice to have supper as a family at home. We certainly appreciate food that is in our freezer that people have made for us that we pull out for such times.

Malcolm's counts were very similar to yesterday: 126 for platelets, 106 for hemoglobin and 1125 for ANC. So it seems likely we will get another daypass tomorrow.

Malcolm has been learning some new signs - he seems to pick them up really quickly now so I should be introducing a few more. He has learned cat, dog, bird and fish and also come on. When he wants to leave his hospital room he knocks on the door and signs "come on" to me and how can I say no to that?

Mary Ellen

Out again

We got out for a few hours late this afternoon. His platelets were 150, hemoglobin 107 and ANC 1137. We are generally permitted to go out on daypass if Malcolm is feeling well and his ANC is over 500 so we hope that we have at least one more day of partial freedom.

Malcolm had a good day. After his nap he had his dressing changed, which went well - no tears! In previous rounds, Malcolm needed to be hooked up to fluids at lunch and naptime to ensure he got his full requirement every day (750 mL). However, his drinking has improved to the point where we are trying not to have to hook him up and trying to get him to ingest the full amount (of milk from his cup with a straw). Today we were able to do so and hopefully this continues as Malcolm really dislikes being hooked up, even for a short time.

Malcolm was showing off his walking skills for the nurses this morning as he tottered unassisted up and and down the halls. He is very delighted with himself, which brings a smile to most who see him.

Mary Ellen

Off the pole

We were finished our last 96 hour infusion of chemo late yesterday afternoon. The next two rounds the chemo will be administered differently which means he won't have to be hooked up so much. We got to go home right after he was unhooked and we got to stay home all night! That was an unexpected surprise - the first time a doctor has allowed us to do so (though I keep asking...). We had to be back by 8:30am this morning. Malcolm is feeling fine - appetite a bit low but otherwise no ill effects from this treatment - he keeps sailing through. Yesterday his platelets were 143, hemoglobin was 109 and ANC was about 1400. We are hoping to go home on a day pass this afternoon.

Mary Ellen

Still going well

Round four is still going well. Malcolm did not sleep very well last night - it seemed to be teething issues. Tonight he seems more settled so we will hope that continues. Other than being a bit tired, Malcolm seemed to feel ok today. As usual, he is quite active and has been enjoying showing off his new walking prowess up and down the halls. He gets a lot of attention from staff and other parents as he totters along waving both hands for balance.

He is a little more than halfway through his IV infusion and should be done late Sunday afternoon.

Mary Ellen

Going well

Round four started yesterday. The sedation went well. Malcolm had a bit of a restless night and was a bit unhappy at times today but overall he is doing really well. The floor is full which makes it busy for staff but the upside is that there are more parents around to chat with. We seem to know quite a few of them from times when they were in over the summer. This floor gets a lot of repeat customers. We will continue to hope that everyone here does well.

Mary Ellen

Round four tomorrow

We are still expecting to start chemo again tomorrow. Today was sunny but cold out. Grama and Grampa Rainey came over and we went to the park with both boys this morning for quite a while. Malcolm had another great day and had a big appetite, especially for supper, which is good since he can't eat anything till late tomorrow afternoon, after his sedation.

Wish us luck,
Mary Ellen

Delay

Malcolm had bloodwork done today and his counts are all nice and high. Hemoglobin is 119, platelets 405 and ANC 3,654. So he should be starting chemo tomorrow but they have run out of rooms on the unit so he is being delayed until Wednesday. I find this to be a pretty reprehensible reason for delay, especially considering they have converted some patient rooms on the unit into admin offices instead of leaving them available for situations of high demand like this. A Tuesday start is more desirable than Wednesday because it means he is on chemo for less of the weekend. This is good because he is then usually allowed to come home for a few hours on Saturday and Sunday, and because there are fewer staff on the weekends so it is not as good to be hooked up.

Malcolm at least is oblivious to what is heading his way in a couple of days. He was extremely happy again today and walking lots as he played with his toys here at home. Tomorrow we will try to go to the park with his big brother if the weather is nice.

Mary Ellen

Lizards and trucks

We have had a quiet weekend. Above Donovan is modelling his new haircut and his new lizards and Malcolm is driving the big dumptruck! Malcolm spent a good part of today zooming the truck while walking as opposed to crawling, as he has in the past. He is on his feet more and more - it is amazing how sturdy he is getting. Tomorrow we go to the clinic for a dressing change and bloodwork. We are expecting to start round four on Tuesday.

Mary Ellen

Music man

Malcolm had a good day today though still teething like mad. It was raining all day and we had nowhere in particular we needed to go so it was a PJ day - he stayed in his sleeper all day long! He really likes asking us to put music on for him to listen to - he will make the music sign and then if we don't respond right away will start pointing frantically to the stereo. Then when the music starts he starts to clap his hands and dance. Perhaps he will be a musician. For now, it is simply very cute.

Mary Ellen

Visit

Today Malcolm's Early Interventionist from the Progress Centre visited. She helps by following Malcolm's developmental progress to provide advice on accessing services and helping to implement the recommendations of speech, physical and occupational therapists. She was delighted to see Malcolm walking and progressing in all areas. She noted that it is a very good sign the he initiates formal communication by using some signs, unprompted, to ask for things that he wants (eg milk, food, music). That was enouraging to hear. She will help Malcolm transition into daycare when he returns. She helped in that regard when he started daycare at a year old and was a very valuable resource for us. So it was nice to have a good visit with her today.

Mary Ellen

Malcolm had his echo and dressing change this morning. Both were uneventful. A child life specialist was present for both. This is very helpful as she carries a bag of toys and tricks to occupy and distract Malcolm while the nurses poke, prod and pull him in various ways.

Yesterday Malcolm's height and weight were taken. He is getting taller - over 31 inches. He weighs 11.05 kg (9 lbs, 5 oz). His weight has remained fairly stable for the past month so at least he is not losing weight. His appetite has not been huge the past couple of months which is common, and may also be due in part to his constant teething. Hopefully he continues to hold his own.

Malcolm did not sleep well last night (teething) but he had a big nap this afternoon. Hopefully tonight will be better. We have been enjoying the nice weather with a walk to the park each day. Malcolm is getting stronger and stronger and taking more and more independent steps.

Mary Ellen

Not ready

The start of round four has been delayed for a week. Malcolm had bloodwork done today and his ANC was 697 - it needs to be 1,000 to start the next round. This is not a huge surprise given that Malcolm's ANC was so low last week and given that he has yet to start a round on time! His hemoglobin and platelets were nice and high at 115 and 469.The dressing change was delayed until tomorrow. His echo (ultrasound of the heart) is also scheduled for tomorrow - bright and early at 8:15am. Malcolm's blood will be tested again next Monday and we now expect round four to start next Tuesday, October 19.

Mary Ellen

Awareness

October is Down syndrome awareness month. There is a button on the bottom right of this blog "31 for 21" where bloggers who write about Ds related topics can commit to posting a new entry on their blog every day in the month of October as a way to increase awareness. I found out about it today so have missed the first part of the month but will try to post something each day for the rest of the month. Click on the button to go to a list of participating bloggers. You may find it interesting to read about other families with a family member with Ds. If you do not know much about Ds and would like some basic information, visit the Canadian Down Syndrome Society at www.cdss.ca.

We were sad to say good-bye to Grandma Lee and Aunt Theresa today. Tomorrow Malcolm has an appointment for bloodwork and dressing change at the clinic. We expect round four will begin on Wednesday.

Mary Ellen

Happy Thanksgiving

We have been enjoying our Thanksgiving company. Malcolm's Grama and Grampa Rainey came over for Thanksgiving dinner as well. Donovan has enjoyed helping Grandma Lee do some baking and has had lots of fun with playdough and going to the park with Aunt Theresa (see photos above). Malcolm has been doing really well and is taking more and more steps every day. Sometimes he is not content to walk but tries to run and falls down. He never gets upset, just tries again or decides to crawl instead - a real joy to watch. Today he had lots of fun with his dad in the park going down the slide and swinging.

Happy Thanksgiving everyone,

Mary Ellen

Blip

We have been enjoying our time at home. This morning Malcolm had to go to the clinic for his dressing change, which went well. They also took bloodwork for a CBC and the results surprised us a bit. His hemoglobin and platelets were fairly high, as expected, at 95 and 416. However, his white cell count and ANC were low - his ANC was only 252! The doctor believes that this is a "blip" and should not persist. He is most definitely neutropenic so if he gets a fever we must rush him to hospital for IV antibiotics. However, he has been very healthy this past week so we hope and pray this continues over the long weekend!

We are very excited that Malcolm's Grandma Lee and [Great] Aunt Theresa are bringing his big brother Donovan home today from his visit to Ontario.

Mary Ellen

Surprise!!

We are home! We were discharged yesterday afternoon. Malcolm's ANC jumped to over 1700 on Wednesday and was still above 1600 yesterday so no need to keep us in any longer. It is very unexpected that his counts recovered so quickly, but not unheard of. The doctor was very surprised at this turn of events. His platelets skyrocketed to 426 on Wed and 586 yesterday and his hemglobin was also rising to 78 and then 80 yesterday. They won't begin treatment until at least 28 days after the start of the last treatment which means we have all of next week at home. We expect to begin the next treatment (round 4) after Thanksgiving on Wednesday October 13. This treatment was by far the easiest - Malcolm felt well throughout it and we got to come home much more than the previous two rounds so we have a lot to be thankful for.

Mary Ellen