Round six started

Malcolm's procedure went well yesterday. He was not too upset about not eating or drinking all morning so that was nice. He napped for about an hour after the sedation. He also got his flu shot before he left (apparently he should've gotten it earlier this fall but was overlooked). He did not cry for that at all though gave the nurse a very reproachful look!

Malcolm slept poorly last night and seemed quite under the weather this morning. By 12:30 his temperature was up to 38.2 and I checked it around 1:30 and 2:30 and it was about the same. I called the clinic to see if they wanted us to come in for bloodwork to determine whether his ANC is still above 500, but the doctor apparently feels that the fever is likely due to the flu shot. So we were told too give him Tylenol (if we wanted to) and take him to emerg if the fever gets significantly worse or he otherwise seems unwell. The Tylenol seemed to perk him up and the fever seems to be subsiding so we are hopeful he will have a better night tonight.

Mary Ellen

Tomorrow is a go

Yesterday it snowed and then warmed up to well above zero so it was pretty slushy out. That did not stop the boys from having a great time shovelling and testing out their new sled in our backyard. It is a good thing we did all that shovelling yesterday because it froze overnight and has stayed below zero today so everything is quite icy.

Malcolm went into the hospital for bloodwork today. The clinic was not open so we had to go to the inpatient unit. Malcolm had his hair freshly cut last night so got lots of compliments on it today (I don't have any pictures yet so that will have to wait for another day). Malcolm's bloodwork shows that he is just barely ready for his next round - ANC is 1100. Hemoglobin is 109 and platelets 351. So all of his counts are recovering and he will start his final round tomorrow. We will be outpatients as this round is simply three lumbar punctures to inject chemo (cytarabine) into his spine. Tomorrow is the first of the three and he will be sedated. The hardest part for Malcolm will be not eating or drinking all morning! (the sedation usually occurs around 1pm).

The main purpose of injecting chemo into his spine is to ensure that there are no cancerous cells lurking in his spinal fluid or central nervous system (CNS). It is fairly common for patients with AML to have the disease in the CNS. Interestingly, because Malcolm has Down syndrome it is actually very uncommon to have any leukemia in the CNS. Because of this, there is a newer treatment protocol that is being studied which reduces the number of injections into the spine from 7 to 2 in total (because after all, who wants to inject toxic chemicals into the spines of babies unless it is absolutely necessary?). Unfortunately, Malcolm did not meet all of the eligibility criteria for this study so he is still on an older protocol which requires a full seven injections (he has already had four injections in earlier rounds).

At any rate, we are almost done treatment. Two weeks from tomorrow they will inject the final dose of chemo into his spine and do a bone marrow biopsy to confirm that he is cancer-free. We can't wait!

Mary Ellen

I should also mention that Malcolm weighs almost 26pounds - 25 pounds, 15 ounces on the scale today.

Merry Christmas

The boys had a lot of fun yesterday. Donovan got everything on his list (toy rocket ship, rainbow bubbles, remote control racecar, snow globe and bubblebath) plus more. He had a lot of fun playing with his new playdough set and some of the games he received. Malcolm's favourite gift was most definitely his keyboard from Grama and Grampa Rainey and he has been enjoying his other new toys like his telephone and airplane. The boys got a new, lightweight sled but there is no snow to test it out - yesterday was cold and overcast but no precipitation.

Grama and Grampa Rainey were here yesterday morning for gift opening and last night for dinner which was a turkey casserole with several side dishes, including freshly baked bread. So it was a great meal that was also fairly easy to clean up.

Malcolm has been feeling quite well. His appetite has been up and down but he has been in good spirits. He loves to get into everything and make big messes. He has really been enjoying his big brother. Yesterday they went onto the deck together before our walk to the park and Donovan blew some of his new rainbow bubbles for Malcolm. Malcolm loves all of Donovan's new toys - sometimes a little too much for Donovan's liking!

We had to go into the clinic last Thursday for a dressing change and we must go for bloodwork on Tuesday. If his ANC is 1000 he will be sedated for the first of three lumbar punctures to inject chemo into his spine. He has had these shots before so we are not expecting any major complications. He did not start them this past week because his counts were not high enough but the doctors are expecting him to be ready this week. It is an outpatient procedure so just a day in the clinic and back home by late afternoon and we can then enjoy the rest of the holidays.

Hope you all had a very Merry Christmas,

Mary Ellen

Update

We got Malcolm's bloodwork back this morning and his ANC actually fell to day to 312! But - WE'RE HOME!!! The bloodwork is typically done by machine, and is sometimes also counted manually. The doctor asked the lab to verify manually and the manual number (considered more accurate) was 425. So not quite the 500 that is typically required to come home, but close enough in the doctor's estimation. Malcolm stayed up for a late lunch with Jan and I and then fell asleep very quickly in his own little bed. He is still sleeping. Donovan will be home soon from daycare and will undoubtedly be very excited.

Mary Ellen

Still not home

Malcolm's ANC continues to rise at a slow crawl and was 333 today. Hemoglobin was 79 (we are doubtful that yesterday's number of 88 was really correct - the measurement error can be up to 20% for any of these counts and it seems very odd that his hemoglobin, which typically recovers at a fairly steady rate, spiked from 78 to 88 and then fell to 79...) and platelets were 360. Our new target for going home is tomorrow (Monday). Malcolm had a restless night last night and a poor nap today - he seems to be teething again but hopefully he sleeps better tonight (he certainly looked quite tired).

Donovan did a really good job in the pageant today - he was a sheep. It was a non-speaking role and the kids had been told to stay on stage and not say anything until they we were told to make their animal noises. Unfortunately, the pageant ended and no one had told the kids to make any noises so Donovan was disappointed about that. Four years old is a great age because the kids are so enthusiastic about everything. I took Donovan to a playground for a while this afternoon and he had a lot of fun making snow angels and playing in the snow (it snowed a few centimetres on Friday and it is still cold so most of it has stuck around).

Donovan keeps asking if this time when Malcolm comes home he can stay out of the hospital forever and ever. I keep telling him that we really hope so.

Mary Ellen

Slow road home

Malcolm's ANC continues to rise slowly - it was 276 today so he is still in hospital and still hooked up to IV the majority of the time to receive antibiotics. His hemoglobin was 88 and platelets were 381. We hope he will come home tomorrow.

Mary Ellen

Still slow

Malcolm has officially been in the hospital for a month now (Round 5 started on Nov 17) and he will be here for at least one more day. His ANC is inching upwards and was 132 today. Platelets were 324 and hemoglobin was 78.

Some of you may recall that we attended the tree lighting ceremony a couple of weeks ago. Click on the link to watch a video of it on YouTube. We are very happy to say that Isaac, the official tree lighter, is no longer resident in hospital. He has a relatively rare form of leukemia (JMML) and has basically been in hospital since May - he arrived here from Toronto Sick Kids shortly after we arrived in July and was here until early December without a single break out. It was amazing to see his family (who do not live locally) cope so well with such a difficult situation - it made our situation seem trivial in many ways.

Mary Ellen

Slow going

The good news is that Malcolm's ANC is continuing to rise but the less good news is that so far it is rising very slowly. It was 84 today. So while we continue to hope we can go home tomorrow the doctor feels Saturday is more likely. Malcolm's hemoglobin rose to 80 and his platelets were 296 so they are rising well. He looked less tired today.

Mary Ellen

On the rise

Good news - Malcolm's ANC was 47 today so we are hoping to go home tomorrow or Friday. His platelets jumped to 212 and his hemoglobin was steady at 76. We said goodbye to Grandma Lee today and hope to see her this winter when we travel to the farm for some much needed R&R and family time. Assuming Malcolm's counts continue to rise, we expect round six to start next week but we will not have to stay in hospital. He will be sedated for three lumbar punctures to inject chemo into his spine - each sedation will be a week apart. So we are expecting to be done with treatment in January!

Mary Ellen

Party pic

Donovan had a big Santa on his cheek and holly on the other side of his face. Malcolm had a candy cane painted on one arm. They both had a great time at the party. Malcolm really liked a rattle that lit up and whirled around when he pushed a button. The kids both got a gift from Santa - crayola colouring kits. They both also painted a craft and Donovan decorated about eight cookies which he gave away to various people including Santa, Buddington the clown (who came right after Santa and entertained all the kids), Grandma Lee, myself and another little boy. It was a nice time for everyone and great that Malcolm had an opportunity to sit on Santa's knee!

Mary Ellen

Another party

Malcolm is doing well. He and Donovan both had fun at the Christmas party in the playroom this morning. Pics and more details to follow. We are all having a good time with Grandma Lee - Donovan has her all to himself this afternoon at home. We will all have supper together again at the hospital. Malcolm's ANC is still zero but his platelets are up to 140 and his hemoglobin increased to 76. We are hopeful Malcolm's ANC will start increasing tomorrow and that we will be home by the weekend.

Some of you have been wondering if we will be home by Christmas and the answer is yes, we expect to go home soon - normally once his ANC starts rising it only takes a few days to recover to 500 and we are expecting his ANC to start rising within the next few days. The doctors had predicted we would be in hospital for about 4 weeks this round and it will be 4 weeks tomorrow.

Mary Ellen

Fever free

Malcolm's fever went away and he has been fever free since Friday. He seems to be feeling quite well though has not been sleeping well so is looking quite tired (but still in pretty good spirits!). His ANC was zero until yesterday when it rose to 13. We are hoping for a higher number today. His platelets and hemoglobin seem to be recovering as well. His hemoglobin has been stable at around 81-82 for the past few days and his platelets rose to 71 after the transfusion, fell to 57 but yesterday were 80. So we are very hopeful that we will be able to go home within the next few days.

Donovan and Malcolm are very excited that their Grandma Lee is visiting for a few days. Donovan and I picked her up from the airport Saturday evening. Malcolm is hooked up quite a bit to his IV pole as he is still receiving three different IV antibiotics throughout the day (10 different infusions!) and will continue to receive them until his ANC rises to 500 and he can go home.

Mary Ellen

Fever

Malcolm woke up looking pretty tired yesterday but we had a good speech session with his speech therapist and early interventionist. He has been having lots of fun being pulled around in a big wagon - the kind with little seats and seatbelts so he can't climb out. They are available for use here in the hospital.

At noon Jan came over and I went out for a lovely lunch with my supervisor from work. Malcolm's temperature had been a bit higher than normal (37.4) and he had looked tired all morning. We were hoping he would wake up from his nap feeling much better but instead he woke up just after I returned (around 2pm) with a temperature of 38.2 so by 2:30 he was hooked up to IV antibiotics. Some tylenol really perked him up - the photo above was taken around 3:30 while he was having fun watching one of his signing time DVDs.

He was done his antibiotics by around 4:30 but then he needed a platelet transfusion. They had not done a CBC in the morning but they did one as soon as he developed a fever. His platelets were down to 13 - the lowest they have ever been! Platelets can be affected by fevers and it is not unusual for them to drop. Luckily, he did not develop many bruises and the transfusion went well. His hemoglobin was 88 and ANC was zero so none of his counts are recovering yet.

Malcolm was unhooked from 4:30 till a bit after 8pm so it was a nice break for supper - Daddy and Donovan came in and we heated up some food and ate it in the room while we watched Bob the Builder. Unfortunately, Malcolm did not feel well last night and was very unsettled so we spent a significant part of the night in the rocking chair. Here's hoping he continues to feel better and tonight is a better night.

Mary Ellen

All is well

Malcolm's bloodwork on Monday was not much different changed from Saturday - hemoglobin was 112, platelets were 55 and ANC was 16. He has bloodwork again tomorrow (Thursday). On Monday Malcolm had a short nap so he went to the playroom and was entertained by Buddington, the IWK's clown. He is great with kids of all ages including little ones like Malcolm. He blows bubbles, sings funny songs and makes silly noises. The kids all love him.

Donovan was in all morning yesterday and he had a great time. He is confined to Malcolm's room since he still has a runny nose but Malcolm was able to go to the playroom for a while when it was supervised so Donovan and I played some games in the room and then the child life specialist brought over a special craft for him to do. It was nice to have such an enjoyable time with Donovan.

Mary Ellen

Bottomed out

Malcolm's ANC is zero. It is expected to stay at zero for at least a week. It must reach 500 in order for him to go home. After his transfusions on Friday, his platelets rose to 60 and hemoglobin to 109. So he may need platelets again but hopefully not red cells. He continues to do well with lots of energy and his appetite has improved somewhat. He has been drinking lots (likely b/c it is so dry in here) which is great (we have to monitor and report how much he drinks every day as he must consume at least 900mLs every day).

Yesterday I donated blood. I have been a regular donor for several years. I would encourage all of my readers to take the time and effort to donate this Christmas season as they are often short of blood this time of year. They are so short of platelets for Malcolm that they often have to give him A positive instead of A negative platelets and give him medication (winrho) to help ensure he doesn't have a reaction. This is somewhat less than ideal so no matter your type, it is worth it to give (we can't all be universal donors!).

I would also like to take the opportunity to urge all of my readers to consider making a donation to the IWK Foundation this Christmas in honour of Malcolm and all that he is going through. Donations to the IWK ensure that many of the programs that have been so beneficial to Malcolm and our entire family can continue to be funded. Every dollar counts. Information on how to make a donation can be found at iwkfoundation.org

Mary Ellen

Santa

As promised, here is Donovan with Santa at the Christmas party last night. He asked Santa for a rocket ship for Christmas. He had a lot of fun dancing with his friends as the IWK rock band played Christmas carols. Malcolm saw Santa arrive outside but then went up to his room with Grama and Grampa Rainey as there were too many people with potential colds etc for him to safely be around. Daddy arrived for the tail end of the party so got to witness some of Donovan et al's dance moves. After the party, Grama and Grampa went home but left dinner for us which we ate in the Ronald McDonald Family Room and by 7pm Donovan was beyond exhausted so it was time for him to go home with Daddy to bed.

Mary Ellen

Lumen issue

Malcolm's platelets were 31 today, hemoglobin was 79 and ANC was 18. So he will likely need another platelet transfusion within a couple of days and some red cells in near future. He is starting to look quite pale but his energy level is good.

There has been some discussion about Malcolm's central line. One of the lumens is showing some wear and tear. The clamp is weak so a small amount of blood is leaking into the cap. This is not considered to be a major problem. However, the same lumen has developed a very thin spot in the line near the cap (ie the end). This is potentially a major problem. The central venous access nurse, an expert in central lines like Malcolm's, came up to see it and she is of the opinion that it is at high risk of breaking if they need to use it again. They will need to use it if Malcolm develops a fever while his counts are low to administer antibiotics. So her preference would be to pre-emptively repair it. This would involve a surgeon coming up to remove the lumen and splice in a new one. Malcolm could be awake for the procedure and it would not involve any pain or discomfort to him (but he would have to sit still while they were doing it!).

However, the oncology doctor has decided not to have it repaired because Malcolm's counts are low and repairing the line, while a sterile procedure, does carry a small risk of infection. So I guess we are just crossing our fingers that, if they end up using it again, it does not actually break, which of course would also result in a risk of infection, and then the repair job would be done on the fly rather than in planned, controlled circumstances. Malcolm's doctor has not actually spoken to us regarding his decision so perhaps he has some sort of plan in place...

Malcolm continues to do well. Donovan had a huge amount of fun at a Christmas party here at the hospital yesterday evening - a tree light ceremony, a band who sang carols, lots of cookies and a visit with Santa were made all the more fun by the fact that two of his little daycare buddies were also here for the party (their parents work at the hospital). Photo with Santa to follow soon.

Mary Ellen

Eyes all clear

Not much change today in Malcolm's bloodwork. Hemoglobin was 82, platelets were 63 and ANC was 203. Malcolm was active and happy. His eye appointment went well. They believe that one of his eyes is somewhat more farsighted than the other (all babies' eyes are somewhat farsighted - kids don't have 20/20 vision until they are about six years old) so he is at risk of developing misaligned eyes in his early years (if his brain decides to only use the stronger eye) but so far so good - his eyes are nice and straight.

After his appointment we went downstairs to see the trains (they have a huge model train display that runs on weekday mornings - maintained by a group of dedicated volunteers) and ran into one of Malcolm's 6Link buddies who spent most of the summer in here with Malcolm. It was great to see him looking so well...

Donovan was in for his usual Tuesday morning visit. Malcolm was in the (supervised) playroom but Donovan had to stay in Malcolm's room as he as developed a runny nose again. We played boardgames, drank chocolate milk and ate cookies. All of a sudden this fall Donovan has turned into a boardgame fanatic.

They have been doing daily CBCs on Malcolm which means a finger poke every morning but I asked today if they could reduce the frequency of CBCs and so we are down to 2/week unless it is necessary to do more. So that is one less stranger to worry about bursting into our room first thing tomorrow morning.

Mary Ellen

Appointments

Malcolm continues to do well. His platelets were 78 and hemoglobin still 88. His ANC was 208 so not much change in anything since yesterday. We are not sure why they want to do a CBC every single day but we are back to unpleasant finger pokes first thing every morning. His fingers are starting to get pretty scarred again.

Malcolm is getting lots of support on the developmental side this month as we begin the transition to permanent outpatient status. His speech therapist dropped by to see him briefly last week and she will give him a full assessment sometime in the next couple of weeks. She has been very proactive in providing advice and strategies to encourage his communication. We will really miss her - she only does inpatients so in January we will transition to someone else.

We had a session with Malcolm's occupational therapist today and she does not have any concerns with his development, although the visit was somewhat of a disappointment. We had not seen her for over six months and I was expecting a more in-depth assessment than she gave and some new advice and suggestions on what to be working on and what to be emphasizing in his play but she really had very little to say. We will continue to be followed by her every couple of months so hopefully next time is a bit more productive or I may stop taking him for a while. In the past she has been more helpful so not sure what was going on today.

We are seeing his physiotherapist on Wednesday for a full assessment and it will be the last time we see her as she only sees inpatients. We will also really miss her as she has been so great with wonderful advice and encouragement. I expect Malcolm will be followed by physio every few months until he has mastered things like running, climbing stairs (on his feet) and riding a tricycle.

We also saw Malcolm's early interventionist last week and she is very pleased with his continued progress despite his illness and treatment. She will help to co-ordinate some of the appointments once he is outpatient again and make sure he is seeing everyone he should be seeing.

So there has been lots happening on that front. Malcolm also has his routine six month eye checkup tomorrow. People with Ds are at increased risk of developing a number of different eye disorders and diseases so they are regularly screened from six months of age onwards. We have no concerns with his eyesight so are not expecting anything to be found tomorrow.

It is nice to get as many appointments as possible out of the way while we are inpatient so that we don't have to come here too much in January. Malcolm continues to be happy energetic and, unfortunately, has discovered that he can push open doors to patient rooms even if they are closed so we must watch him very carefully when he walks down the hall now. Not everyone is happy to have a smiling, drooling, armwaving, noisy two year old burst into their room unexpectedly...

Mary Ellen

So far, so good

Malcolm's platelets were 20 yesterday so they did a transfusion and they were up to 96 today. His hemoglobin is holding steady at 89 yesterday and 88 today. His ANC was 580 yesterday and 246 today. We are expecting his ANC to fall to zero soon and stay very low for at least a couple of weeks. Basically, all of his counts are falling because of the effects of the first dose of chemo given on the first two days of this round - the effects of the second dose of chemo will kick in later this week.

Malcolm is doing well with lots of energy. He did develop a diaper rash that requires some medicated cream. The cream seems to be helping and his fluconozole started again this morning, which will also help clear it up. He had been off it for over a week as it potentially interferes with the chemo so he typically stops it 24 hours before chemo starts and stays off it until at least 48 hours after chemo is done. We continue to rinse his mouth with chlorohexidene and so far no mouth sores but he is at higher risk of those this month as well.

So far, so good.

Mary Ellen

Last chemo infusion

Malcolm has been doing well. He had his last IV infusion of chemo this morning (he has had four three hour infusions again this week)! He gets a shot in his leg of the L-asparginase at noon and then that's it for chemo this round. Next round is all just injections into his spine so he days of being hooked up to a pole are drawing to a close.

Malcolm's counts have generally been falling. His hemoglobin was 98 yesterday and 88 today. His platelets were 65 yesterday and 29 today so he may need a transfusion within the next couple of days. His ANC has been bouncing around - it was 247 two days ago but was 1,536 yesterday and today was 758. We expect it to drop to over the next few days.

Malcolm has been tolerating his chemo really well again - his appetite has dropped off a bit but he is still eating something at most meals and he has been drinking his milk really well. His energy level has been great as well. The chemo this week has resulted in a diaper rash but hopefully that will resolve once the chemo has worked it way through his system (48 hours from now).

Donovan has been visiting the hospital quite a bit and has really been enjoying board games - there are many, many board games to choose from so we are learning some new ones as well!

Mary Ellen

Bloodwork

Malcolm had bloodwork today. His hemoglobin is 108, platelets 212 and ANC 576. He continues to do well.

Mary Ellen

Doing well

Jan and Donovan arrived yesterday morning and I went downstairs for a few minutes. I came back into the playroom and this was the happy sight that greeted me - so nice to see all of my boys having a nice time together. Donovan has a lot of fun at the hospital playing games in the playroom and, more recently, being permitted to watch a Thomas the Train DVD in Malcolm's room while they eat lunch. Malcolm is always very animated when he sees Donovan and tends to eat his lunch better if he eats it with his brother.

The parade was big excitement for the boys last night and Donovan was very excited to see Santa Claus at the end. It rained quite hard just before the parade but luckily the rain stopped and we were able to sit outside and watch it.

Malcolm is having a good day today - happy, energetic and eating well. Hopefully he continues to feel so well for the rest of his hospital stay!

Mary Ellen

Course one, round 5 done

We are done the first course of round 5. He has had four three-hour infusions of the high concentration cytarabine and one injection of the L-asparaginase. He will have a second identical course starting next Wednesday. He was not hungry yesterday and had a low-grade fever in the evening but some Tylenol really perked him up. He seems back to his usual happy, energetic self today. We're not entirely sure why they want to keep us in hospital till next Wednesday - his counts were all good yesterday at 105 for hemoglobin, 324 for platelets and over 5,600 for his ANC! So there is no concern of neutropenic fever for at least a few days. They are not even checking any bloodwork this weekend...

The unit is beyond full. Some patients have been moved temporarily to the seventh floor (very disruptive and distressing for these patients and families) and they have converted one of the patient rooms that was being used as an office back to a patient room. It is unclear why there is this unprecedented surge in pediatric cancer patients but everyone is coping as best they can - nurses are very taxed, doctors are spending extra time on the unit and it seems very hectic - a far cry from the summer where there were only a half dozen patients on the whole floor!

Tonight Halifax's Santa Claus parade goes right by the hospital and a special section with seating for inpatients and their families will be set up so we are going to watch it - fun for the whole family.

Mary Ellen

Twins

Last week, Donovan wanted he and Malcolm to dress up as "twins". I have matching jeans and a T-shirt for them so got them dressed - Donovan was quite thrilled. I don't think Malcolm noticed. Donovan had fun making funny faces for the camera and Malcolm, as usual, enjoyed playing with his big brother.

The fifth round is underway. Malcolm is getting a very high dose of one of the chemo drugs (Ara-C, also known as cytarabine). He will get 15 times as much as he did in any of the previous rounds. The good news is that he only needs to be hooked up for three hours at a time twice a day for two days this week and two next to receive it. He will also receive a couple of injections of another drug, L-Asparaginase. He has received two three hour doses already and it does not seem to make him feel ill at all so that is really great. He has lots of energy and a decent appetite.

My computer is broken so it may take me even longer than usual to respond to emails but that does not mean that I don't enjoy receiving them!

Many thanks to everyone who has made us food recently - it has been very helpful.

Mary Ellen

Round five tomorrow

Malcolm went to the clinic for bloodwork today. Hemoglobin was 112, platelets 629 and ANC was 2,175. So he is ready to begin his next treatment tomorrow - the very first one he has started on time!

Mary Ellen

Down syndrome leukemia blogs

One of the reasons I keep such a detailed blog of Malcolm's treatment is to share with other families who receive the same diagnosis what the treatment may entail. When Malcolm was diagnosed, we were given virtually no information on, in practical terms, what to expect and how it would impact him and our family. I found Carey's Dream Big blog and it was a wonderful source of information. There are some other blogs by parents of children with the same type of leukemia that Malcolm has and I thought it might be useful to share them here. You can read about their experiences by clicking on the links below. Warning: not all of these stories have happy endings (though it is important to keep in mind that a big majority of kids with Malcolm's type of AML do make a full recovery).

http://www.caringbridge.org/visit/landonmorrill
http://thedailylois.blogspot.com/
http://livinglifewithes.blogspot.com/
http://littlewonders-heather.blogspot.com/
http://cbranam.blogspot.com/
http://sweetellagrace.blogspot.com/

Mary Ellen

We made it home

We were discharged today and were home shortly after noon. Malcolm had no more fever, his cultures showed no bacteria and his ANC was over 700 (must be over 500 to come home). We are still anticipating that his next round will start on Wednesday. He will have bloodwork on Tuesday to confirm that his ANC is at least 1,000. We are very tired and very happy to be able to come home for a couple of days. Thank you to everyone who has been keeping us in your thoughts and prayers.

Mary Ellen

Fever

We are in the hospital. At bedtime last night Malcolm spiked a fever (38.7) so we brought him to Emergency at the IWK. They checked his blood counts to see if his ANC was still low and it was - only 400. So they took various blood samples and a urine sample to culture and hooked him up to the IV antibiotic cocktail - 3 different antibiotics given either 6 or 12 hours apart. I was hoping that would be it and we would be home in a couple of days but he spiked another fever tonight at bedtime so they did more cultures. This may delay going home but I am hopeful they will let us out on Sunday, or Monday at latest.

Malcolm seems to be feeling quite well (once the Tylenol kicks in). He is drinking really well and eating a little bit. Unfortunately, he still has a bit of congestion from his cold last week so he is on isolation as a precaution (so he doesn't pass something on to other kids on this floor). So that means being confined to his room a lot. When he is not hooked up, I'm allowed to take him off the floor to the main level of the hospital or outside so at least it is not 100% confinement.

We hope Malcolm continues to feel well, that the fever goes away and that all the cultures are negative. In meantime, we are settling in for another weekend in hospital.

Mary Ellen

Low

We are almost over our colds. Malcolm seems to still have some congestion but is otherwise fine. His bloodwork on Monday revealed platelets in the stratosphere - 792! Hemoglobin increased to 110 but ANC took a nosedive to 285 so he was/is severely neutropenic. He has bloodwork again on Friday so we are hoping for a bigger number so that we can relax a bit on the weekend.

Mary Ellen

Not much news

We've had an uneventful rest-of-the-week at home. All of us caught Donovan's cold so we are all still recovering. Thankfully Malcolm did not develop a fever and he seems to be feeling better each day now. I think the prophylactic antibiotics he is on must be doing a good job of preventing anything too serious from taking root. He takes fluconozole every day, to help prevent fungal infections, and twice a week takes septra which is an antibiotic to help prevent bacterial infections (or, if he does get something, to at least slow it down until he can get additional drugs). I'm sure that most of you have read that it is a bad thing to be over-exposed to antibiotics but for people with low immunity the risk of contracting a nasty infection seems to outweigh this risk.

Malcolm had bloodwork on Thursday. Hemoglobin was 94, platelets shot up to 280 and his ANC was down to 1254 (a bit below normal so considered mildly neutropenic). He is having bloodwork again on Monday. Since he was discharged so early, they want to keep a closer eye on him in case any of his counts drop suddenly. His dressing was changed yesterday.

His target date to begin the next round remains November 17. I have not yet heard whether or not they will do another bone marrow biopsy before this round and if so, when that will occur. For now, we are really enjoying spending time together as a family and trying to get over all these colds.

Mary Ellen

Big news!

Donovan had a great time trick or treating last night. Malcolm was home for supper and went to a few houses with him. We were hopeful yesterday that we could come home today and sure enough, we are going home!

It all started yesterday when his bloodwork came back with a shockingly high ANC - over 4,000, from 603 they day before. As most of my regular readers know, usually on Malcolm's type of chemo the patient's ANC drops well below 500, often to zero, stays low for a number of days and then comes back up. Patients have to stay in hospital until the ANC has recovered to over 500.

Well, Malcolm's never dropped this time - it fell to 603 and then reverberated back up! It is still nice and high today at over 3,3oo. So we get to go home! I think we set some sort of record at the hospital here for least number of days in hospital for round 4 of an AML patient (12 days). We are mostly packed and Malcolm is having his nap. Daddy will come over when it's over to load up the car and take us home.

Malcolm will have bloodwork done on Thursday. His platelets were 24 yesterday and 31 today so they may be on their way up or he may need a transfusion. His hemoglobin was 100 yesterday and 99 today. It is still well above the threshold for transfusion (70) but they will keep eye on it through bloodwork over the next couple of weeks as well.

Mary Ellen

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

Another bounce

Today we had very unexpected blood results - his ANC bounced up to 630 today so we were allowed out on a daypass after naptime again. It was nice to have supper at home. Everyone here is amazed that his ANC has been so high this past week but the consensus is that it is on its way down. Platelets are starting to recover - they were 126 today. Hemoglobin may be starting to recover as not much change from yesterday - it was 76. Malcolm has been feeling really well today - very happy and active. Jan is back from a couple of days away (a short trip to Fredericton) so we were happy to see him.

Mary Ellen

Down again

Malcolm's ANC was 390 today so we are stuck in the hospital. His hemoglobin was 74 - if it drops much lower they will transfuse. His platelets are showing signs of recovering as they were 66 today. Malcolm continues to feel well. It looks like they are going to prescribe puffers - the doctor here consulted with his pediatrician who agreed it would be a good idea to help get rid of any coughing. He also had a chest x-ray which was totally clear.

Mary Ellen

Still up

Malcolm's ANC remained high enough that we were out on pass yesterday and today again. Yesterday his ANC was 633 and today it was 524. His platelets were only 17 yesterday so he had a transfusion and they were 58 today. His hemoglobin was 77 on Saturday and 78 today so he may have a transfusion for that sometime this week. He has been very well and full of energy. He is getting sturdier and sturdier on his feet and has been practicing independent steps quite a bit. His chest sounds a bit "rattly" so it was suggested we consult with his regular pediatrician to see if he should go back on puffers for the fall/winter again. Otherwise he has had a great week.

We are missing Stacey and Donovan. Stacey flew back home this afternoon and took Donovan with her! He is visiting Grandma and Grandpa Lee at the farm for ten days and will also be visiting Ella, Lucy and Anna at the camp.

Mary Ellen

Bounce

We had an unexpected bonus the past couple of days - Malcolm's ANC bounced back up so we were able to go home for supper on a day pass on Thursday and Friday. On Thursday his ANC was 696, hemoglobin was 80 and platelets were 56. Yesterday his ANC was 544, hemogoblin was still 80 and platelets were 32. So he will likely need a platelet transfusion today or tomorrow. Today is dressing change day as well. Malcolm has been feeling very well he past few days and his eating is really improved - he does not seem to be teething at the moment and it has made a huge difference in the amount of texture he will tolerate.

This week we had a number of developmental appointments - Malcolm had a full session with both his physiotherapist and speech therapist. They each gave him a more in-depth assessment than he has had in months and gave me some very good tips to continue to encourage his physical and speech development. We also saw his early interventionist who was amazed at the great progress he has made over the summer.

Mary Ellen

Counts down

Above is a picture of Stacey with Malcolm at the waterfront,where we went for a walk yesterday while he was out on daypass. Next are a couple of shots of Malcolm in the playgarden and one of Donovan and Malcolm petting the dog that visits the playroom sometimes. Malcolm's ANC dropped to 396 so he was not permitted to leave the hospital today. His platelets were 93 and hemoglobin was 92.

Every morning Malcolm must have bloodwork done and standard procedure is for this to be done around 7am. So regardless of whether or not he is sleeping, his finger is "poked" (in reality, a small incision is made) and enough blood is squeezed out to fill one to three small vials. Often a single "poke" is not enough so his finger is cut twice, or even three times. Needless to say, after several weeks, his fingers are a black and blue mass of small cuts. I spoke to the doctor about this again yesterday and she very kindly raised the issue with nurses (apparently this is a nursing practice and therefore the nurses' jurisdiction) and there is agreement that from now on they can instead draw blood through his central line at noon when he is hooked up to his IV for naptime. So no more finger pokes first thing in the morning (unless he gets sick in which case they will want his bloodwork earlier in the morning again)! This will mean a much better start to our day every day. It is too bad they were unable to come to this decision last round.

Mary Ellen

Recap

I know that there are some readers who are fairly new to the blog so to recap:

The purpose of this blog is to keep family, friends and other interested persons informed of my youngest son's progress with leukemia treatment. Malcolm was diagnosed in early June 2010 with AMKL, a type of AML (leukemia) relatively common among children with Down syndrome. This was not a complete surprise as we knew Malcolm had a higher than normal risk of developing leukemia since he was born with a rare blood disorder which can be a precursor to this particular type of leukemia.

Malcolm began treatment in early July. He is currently in the middle of round three of six treatments. Each of the first four treatments is identical - a sedation to inject chemo into his spine followed immediately by 96 hours of IV chemo. Then his counts begin to drop as the chemo works its magic. Malcolm must be in hospital from the start of each treatment until his counts fall and then rise again. He is discharged when his ANC climbs back to 500. So he is typically in the hospital for 3-4 weeks for each round. We expect his treatment will take at least six months in total.

Malcolm has been tolerating the treatments quite well without getting really ill. His energy and appetite are a bit low at times. In the first round, he had some neutropenic fevers when his ANC was low but it was smooth sailing the second round.

We are thankful for all the support we receive from family and friends and hope that you all continue to keep us in your thoughts and prayers.

Mary Ellen

Doing well

Malcolm continues to do well. He was home on day pass for supper yesterday and Sunday which is nice as my cousin Stacey is visiting us this week. She is getting to know the hospital quite well - Malcolm and I showed her all our favourite spots yesterday. Malcolm's counts are still quite high - yesterday his platelets were 173, hemoglobin was 92 and ANC was almost 1400. Last night Malcolm was pole-free - no need to be hooked up to his pump! He is hooked up for two nights after his chemo ends to give him Zofran (anti-naseau medication) by IV in the night, but we were done with that by last night. Now we will resume our routine of being hooked up only for nap. This is to ensure that he gets enough fluids every day - he is supposed to consume 750mL, which is a lot for him so he is unlikely to drink that much. He is hooked up every day at lunch time and stays hooked up until he is done his nap. He does not like it (he recognizes now when the nurses start fiddling with the caps on his central line that he is going to be hooked up to the dreaded pole) but it is better than being hooked up during playtime or all night long so he will have to live with it for now...

Andrea and her family exceeded their fundraising goal for the Terry Fox walk they participated in this weekend, raising over $500. A big thank you to all who supported them.

Fingers crossed that we can continue to get out on day pass today and tomorrow.

Mary Ellen

Round three treatment done

Malcolm had a good week of treatment. The sedation on Tuesday went well and he seemed to feel ok most of the week - only one day where he really ate nothing. He finished his treatment yesterday afternoon and was able to come home for supper yesterday and today on a day pass, which was wonderful (we were glad to be rid of the pole again, at least while he's awake!). We are hoping that day passes will continue for at least the next couple of days. On Monday Malcolm's hemoglobin was 102, platelets were 447 and ANC was 7080. On Thursday hemoglobin was 108, platelets were 238 and ANC was 4410. He will have another CBC (complete blood count) tomorrow so we will see if his counts are starting to fall significantly. Malcolm has been enjoying some of his new birthday gifts.

Mary Ellen

Terry Fox Run

Our friend Andrea and her family are participating in a Terry Fox walk in support of Malcolm in London, Ontario this weekend. Information about the event and on how you can support Andrea's family's effort can be found at http://my.e2rm.com/personalPage.aspx?SID=2754045. The Terry Fox Foundation does ongoing work to fund innovative and progressive cancer research programs. If you have not read the story of Terry Fox, I encourage you to do so. Even decades later, it resonates.

Mary Ellen

First day, round three

Today went well. Malcolm, as usual, got quite cranky just before the sedation (nothing to eat since the night before!) which was around 1:30. The sedation was to inject some chemo into his spine, same as rounds one and two. He had a nice long nap afterwards and woke up much happier, especially since he could have a snack right away. He was hooked up to the IV chemo as soon as he woke up so it should finish around 4pm on Saturday.

We are in the same room as last time. We are pleased about that as we are able to have a larger play area in this room than some of the others as the layout of the room is slightly different. Malcolm's bloodwork yesterday showed that his platelets were still very high at 447 as was his ANC, which was a whopping 7,080! Hemoglobin was slightly below normal at 102.

He also had his six month check on his thyroid function (just more bloodwork) and everything looks fine. Malcolm has been on a low dose of synthetic thyroid since last September. Thyroid problems are common in people with Down syndrome so Malcolm had been screened regularly from birth. We are hopeful that he will outgrow this condition.

Mary Ellen

Birthday boy

The photos are somewhat out of order. Donovan helped me bake the cake and decorate some cupcakes yesterday - you can see what his favourite part of "helping" is! Malcolm is teething like mad and refused to move his hands out of his mouth for a birthday photo. In the last photo, Malcolm is posing with his friend Lachlan - they played together for the first part of the party (btw happy birthday to friends Lachlan and Evan who are having birthdays around this time. And to cousins Lucy and Ella who turned four earlier this month).

Malcolm seemed to have fun at his party and Donovan undoubtedly had lots of fun. The weather was nice enough that the kids played outside and most people had their cake and goodies on the deck. Many thanks to everyone who came (and thanks to those who were feeling unwell and stayed away - we missed you but were glad you did not come!). Most people came towards the end of the timeframe so it was a bit busy and we apologize if we were unable to speak with some of you as much as we would have liked to.

Back to the hospital tomorrow for a sedation (for another lumbar puncture/spinal tap - no bone marrow procedure this time) and the start of his next chemo treatment - 96 hours of continuous IV infusion. Wish us luck.

Mary Ellen

Birthday Invitation

We have decided to have an open house style celebration for Malcolm's second birthday on Monday September 13. Feel free to drop by for cake and ice-cream any time between 3 and 6pm. We hope this is a good time for those of you with school-aged kids. We are suggesting that gifts are not necessary but if you feel like you would like to give something a donation to the IWK would be greatly appreciated.

We look forward to seeing all of our Halifax friends and supporters on Monday. If you need our address or directions to the house, please email Jan or I.

Mary Ellen

Dressing change

Malcolm went to the clinic (the hematology/oncology clinic at the hospital) today to have blood drawn and his dressing changed. The dressing covering the opening where his central line enters his chest needs to be changed every six days. Typically there is one nurse doing the actual dressing change and one nurse and myself holding Malcolm still. Today a "child life" worker also joined us to help distract him with fun toys. She has helped out the last few times he has been an inpatient and had it changed, and has been very helpful. It is a sterile procedure so we must all wear masks and only the nurse wearing the sterile gloves may touch the area under the dressing (Malcolm does not wear a mask as it would be impossible to keep it on him. It is all we can do to keep him from drooling on the site...) He often gets upset during the procedure because parts of it are painful (usually the most painful part is having the old dressing pulled off) and because he does not like being still for so long. Today it went fairly well - the old dressing cam off quite easily and there were no mishaps in applying the new dressing.

His counts are all very good. Hemoglobin is 103, platelets 533 and ANC 2700. The plan continues to be for Malcolm to start chemo next Tuesday.

Mary Ellen

Happy at home

We made it home on Saturday, September 4. Malcolm's ANC had jumped overnight to 672! Hemoglobin was 100 and platelets 462. The doctor was considering keeping him in one more night but decided to let us go since we live so close. We went home after Malcolm's nap and after the storm (aka hurricane Earl) had passed, so were home around 3pm. There were a lot of big branches down blocking roads and sidewalks and a few trees had blown over. Most houses now have a pile of branches similar to the one outside ours (see photo above). We lost power for about 30 hours - it came back on Sunday evening around 6:30pm. We all agreed that it was much nicer to be home together without power than for Malcolm to spend another night in hospital...

The last day he was in hospital, Malcolm developed a slight cold - just a runny nose and some congestion. However, because of the cold and because his ANC was low for so long, the doctor feels it is best if Malcolm has some extra time to reconstitute before the next round begins. So we get to have a week and a half at home - treatment starts September 14, which means Malcolm will be home for his birthday! More on that later...

Mary Ellen

Finally...

Malcolm's ANC is on its way up. It was still zero yesterday but today is 195. His platelets were 420 yesterday and 455 today. His hemoglobin was 94 yesterday and 95 today. He continues to feel well (despite poor sleep due to teething) so hopefully we can go home tomorrow or Sunday at latest.

Mary Ellen

Still down

Malcolm's ANC is still zero. It must be 500 or greater to leave so likely at least another couple of days in here. The lab and the pathologist took a close look at his blood sample this morning and determined that there are some neutros (the N in ANC) that are just forming and so are too tiny to be counted yet but it shows that they are starting to develop. This is reassuring. His next round is scheduled to begin next Wednesday (assuming his ANC is up to 1000) so we may not have much time at home. His platelets are still above 400 and his hemoglobin is 94.

Mary Ellen

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