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