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