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