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