Sunday, April 26, 2009

"Just cause we needed a bit more drama"


Good afternoon,

Before anyone panics, this week's drama does not involve me going into early labour in the middle of the night. Rather, it refers to Dane + a tennis racket + lost teeth + trips to the ER and pediatric dentist. Here are the details of the past week ...

Monday through Thursday unfolded very smoothly. Given Dane didn't have any appointments at the Clinic or Hospital, he went to school all day for all four of those days and didn't complain at all of fatigue. He really got back into the routine of classroom time and enjoying recesses outside with his friends. On Tuesday his class went for a long community walk and he fared great.
On Monday and Wednesday we enjoyed visits with Auntie Karen from New Brunswick. Ashley and Dane were very sad when it was time to say good-bye but we reassured them that Uncle Scott, Auntie Karen and Marshall would be here again soon (early July).

On Thursday after school he and his best buddy wanted to play for a bit so they came to our house. I decided to let my guard down and allow them to play tennis in the driveway and as you can likely figure out, this is where the drama unfolded. They had only been playing for a few minutes and must have been a little too close when the accident happened. I heard quite the scream from outside and then they came to the door - Dane with one tooth in his palm, blood on his face and another tooth pushed back in his mouth but still hanging on. They both calmed down very quickly and then it was my turn to panic. I called Dirk and as he later told me, very incoherently told him to get home because there had been an incident involving Dane's face and a tennis racket. So much for my communication skills at that moment! His poor buddy felt so bad and Dane felt bad that his friend felt bad - after the fact it was very touching to watch them react to one another's feelings.

After consultation with the oncology nurse, we headed for the Children's ER for a check-up. Dane was given a dose of antibiotics, his blood was drawn and the decision made to see the dentist on Friday to remove the tooth. The ER was a zoo, but fortunately we by-passed the line and were in and out in about 1.5 hours. We called back later to find out Dane's blood counts, and as suspected, his hemoglobin and platelet counts were just fine. However his neutrophil count was very low, in fact the lowest it had ever been so that was concerning given the mouth is a major potential source of bacterial infection.
We visited the Cancer Clinic the next morning and more blood was drawn. He neutrophils dropped a bit more from the night before, so a decision had to be made whether it was safer to leave the tooth until his counts went up a bit or remove it on Friday. Ultimately the doctor said to have it removed so off we went to visit Dr. Cory for an "extraction". I was dreading the procedure, but it went off without a hitch and Dane didn't complain at all about the freezing. The good news in all of this was the two teeth that were knocked out were baby teeth and on the way out anyways. Dane has continued to take the antibiotics to prevent an infection and we've made it through three days with no sign of a fever at all. If he were to run a temp right now, we'd be back at the ER pronto and there would be no option - he'd be admitted for at least a couple of days. That is the last thing any of us want or need right now, so we're watching him closely.
Dane's energy remains really good and this morning our entire family participated in the MS Walk. The route this year is 6 kms and he walked probably close to 4 kms before he opted for a ride in the wagon. He has rested up the past couple of hours and is now playing his dad Wii NHL 2K9 and likely kickin' butt as usual.
Given how low his neutrophils were this past Friday, he could not start the next round of chemotherapy. He returns to the Cancer Clinic this coming Friday for another check-up, but we are not optimistic he will be ready then either (his neutrophils have to climb from .1 to .75 and that's a pretty big jump in one week). We'll have him at school as much as possible again this week as long as he feels well.
I saw my OB this past Monday and am now really in the home stretch. I'm in my 37th week and he is going to do one last fetal assessment this Tuesday. Our "negotiations" have been very productive and it's highly likely baby "H" will be here within two weeks. If I were not so tired after my 6 km hike earlier today, I'd be doing a happy dance right about now. The time is passing fairly quickly and my pregnancy "purgatory" will be over soon. I know that everyone in our household is looking forward to our little gal's arrival.
Have a good week everyone. I'll post an update after Friday's check-up (barring no more drama occurs in the meantime).
Take care - Janie and Dirk

Sunday, April 19, 2009

"Passed with flying colors"

Good afternoon,
It seems I've been suffering from a short-term case of "writer's fatigue" and just haven't had the same jump to update the blog this week. However, I'm back on track and will cover all the action the past nine days in this update.
Post-transfusion
As I mentioned in last Friday's update, Dane's energy really kicked up a notch after his platelet and red blood cell tranfusion. His hemoglobin and platelet counts were much higher by his Tuesday appointment and that was good news.
End of Intensive Consolidation
Tuesday's appointment marked another milestone in Dane's leukemia treatment - he completed the second month of Intensive Consolidation (IC). As you will recall from previous updates, IC was the treatment path Dane was randomized into when we opted to continue with the research study. In my words, Dane "passed IC with flying colors"! He received a tremendous amount of medication these past two and a half months and he really did sail through for all the following reasons:
- He didn't need to be hospitalized at any point for fevers/infections even though his neutrophils were quite low at numerous times
- He only required the one blood transfusion
- He attended school on a somewhat regular basis
- He maintained his weight at about 48 - 49 pounds (a good weight for him) and grew 1/2 an inch since February
- He maintained his strength and is able to do all the same physical activities as before diagnosis (swim, walk, run, skate and bike)
- He regained his confidence with the various procedures - IVs, finger pokes and injections - and has become so independent he doesn't even want me in the room sometimes now when he's receiving medications
- His family didn't "trade him in" even though he has become quite the "dictator" at times (I couldn't resist this comment)
Hemoglobin & platelets on the rise; white blood count and neutrophils on the down-hill slide
Dane's blood was tested at the Tuesday appointment and it showed his neutrophils were headed into the cellar as a result of the medicines (to be expected at the conclusion of IC). Given they were pretty low, Dane's doctor scheduled us to come back to the Clinic on Friday for another blood check. That test confirmed his hemoglobin and platelets were headed in the right direction (up) and his neutrophils were the lowest they had been since January. The low neutrophil count doesn't affect how he feels, rather it affects his ability to fight infections. So he is officially quite "neutropenic" and could be this way for a couple more weeks (until his blood recovers a bit from this round). This is when our diligence about hand washing really kicks into high gear and he needs to be kept away from folks who aren't feeling up to par. Fortunately flu and cold season seems to be behind us and the fresh air is helping to clean out those nasty germs.
What's next?
We are now in the same holding pattern as we were in early/mid March when Dane completed the first month of IC. His next phase is called Interim Maintenance but he can't start this round until his platelets are 75 (they were above that on Friday) and his neutrophils are .76 (they were only .27 on Friday). So, best case scenario is he starts this coming Friday April 24, however we are not at all planning for that to happen. He was delayed a couple of weeks in March so we are fully expecting it will take about that same amount of time for his counts to be high enough. Although we will still be anxious about the delays as they happen, we are heading into this next round with a better sense of awareness and likely realism. We also know he felt fantastic during that two week break in March so we are looking forward to more of that in the next couple of weeks.
The rest of us ...
At times during this ordeal it seems like the rest of us in this household are kind of non-existent, but of course that is not the case. Dane's illness is a family illness and we are all affected. Ashley has been a real trooper the past while and life at home is much more normal. Although we know she still has her moments of anxiety about how much life has changed, their relationship is very much what it was before he was diagnosed. She is counting the days until her baby sister arrives and we are really looking forward to watching her be a loving big sibling. Dirk and I continue to manage with Dane's leukemia, but as I've said before, some days are much more challenging than others. The reality that we are only a few weeks away from welcoming our newest child has really set in and we fluctuate between feelings of excitement and anxiety. Sleep is still a fairly rare commodity for both of us these days and we know it's not going to get better in the weeks to come!
Dane and I have a reprieve from the Clinic for much of this week. He is not scheduled to return until Friday and knock on wood, he'll continue to feel well enough to avoid the hospital. I see my OB tomorrow for my 36 week check-up and am not expecting any eventful news. Dane and Ashley's aunt arrives tomorrow for a short visit from New Brunswick and we are all looking forward to seeing her.
Have a good week and thank you for continuing to tune-in to the blog so faithfully. I will post an update after our Friday appointment.
Janie and Dirk

Friday, April 10, 2009

"An order of platelets & red blood cells please"

Happy Good Friday everyone,

From today's title, it should be pretty evident that Dane's blood needed some help yesterday. With the exception of the red blood cell tranfusion he received on day 2 in the hospital in January, we had dodged the blood transfusion bullet thus far. However, he has been receiving some pretty heavy dosages of medicine the past couple of months that affect his bone marrow so his blood was bound to need a little "boost" eventually. Although he still had some decent color and energy yesterday morning, the lab results showed his hemoglobin was down to 70 and his platelets were only 9. Given we were facing a long weekend and the fact his counts could have still been dropping from the medicines he received on Tuesday, the oncology team decided it was time for platelet and red blood cell transfusions.
I've "plagarized" the information below from the Internet to help explain what Dane needed and why ...
- Platelets are tiny cells that are found in the blood and their function is to help it to clot. Platelets are made in large numbers by the bone marrow (the spongy material inside the bones). Sometimes the number of platelets in the blood is lower than normal. This may be because of illness (including cancer, leukemia or certain blood disorders) or it can be a side effect of chemotherapy treatments. Transfusions are usually given when the platelets are less than 10 (Dane's were 9 yesterday), as this is when there is a much greater risk of serious bleeding. A platelet transfusion generally takes about one hour to administer.
- Like platelets, red blood cells are developed in the bone marrow. For a red blood cell transfusion, the blood you get must match or be compatible with your blood type (Dane is A+). You may get a red blood cell transfusion if you have too few red blood cells (anemia). Anemia causes weakness and fatigue. To measure Dane's level of red blood cells, his doctor checks his hemoglobin level regularly. Transfusions are usually given when the hemoglobin level is less than 70 (he was right on the cut-off yesterday). For a child Dane's size, a red blood cell transfusion generally takes about three hours to administer.
When Dane was tranfused in January, it was because the leukemia was causing the bone marrow to malfunction and not make enough red blood cells. At this point, it's not the leukemia that is causing the issue, it's the effect of the chemotherapy on his blood production. So although we would of course prefer he not receive other people's blood, we are not as scared about why he needs it right now. It's also very stressful knowing that low levels could result in a very serious bleed.
Given the number of hours it takes for transfusions, once we received the news we had to go this route yesterday, we hunkered down for a long day. However, Dane had a few issues along the way with the two transfusions, so it ended up being an even longer visit - 9:30 am - 6:30 pm. He had a slight allergic reaction to the platelets and so he was given Benadryl to help with the symptoms - a slight rash and stomach ache (which promptly put him to sleep for about an hour). He was also complaining of a pain near his IV site when the red blood cells were going in which the nurses figure was due to the cold blood. We had to stop and start a couple of times before he was comfortable so that delayed the process. He was a trooper the entire time and when he woke up this morning full of energy, rosy lips and cheeks and "Dane attitude", we were reminded of the boost he gets from a transfusion. He really seems to know the difference, because he commented first thing today how much more "energetic" he feels.
Given Tuesday and Thursday were full hospital days, he didn't make it to school very much again this week. He has a four day break now for the Easter long weekend and I'm hopeful the next couple of weeks will be better scholastically. It's a good thing he's a bright little guy or we'd really be stressed out about his lack of attendance.
It's supposed to be plus 5 and sunny here this afternoon so we are preparing for our first bike ride of the season (no need to panic, I'll be walking while they are riding). They are looking forward to it because we've promised a trip to 7-11 for a slurpee on the route.

Happy Easter - Janie and Dirk

Wednesday, April 8, 2009

"Watching the counts closely"

It's been a week since my last entry so I figured I better get my typing fingers in gear and post an update. Here's the scoop on what's been happening since last Tuesday ...
"New van on autopilot to HSC" - We got our acts in order and purchased a new van (which we picked up last Monday) and it has been on autopilot to Health Sciences Centre ever since. Dane had visits Tuesday - Friday last week to receive doses of a particular chemo medicine, I had to see my OB on Saturday and we were back there yesterday for his weekly exam. By the time the next few months are up, I will know every parking spot off by heart and will be able to make the drive with my eyes closed (ok, for everyone's safety I'll try to keep them open).
"Pain medicine required" - Dane has been suffering off and on for the past while with nasty leg pains in the evening and overnight. The oncologist is not sure whether they are a side effect of the chemo drugs or "growing pains", however they are very painful and interrupt everyone's sleep. They peaked one night last week so Dane has been prescribed morphine to help with the pain (he can't take Tylenol because it masks fevers). The last two nights he has had the pains so we've been applying heat and giving him a very small dose of morphine. It seems to be helping ease the pain much quicker and that's a relief to all of us.
"Baby on track" - My OB did a fetal assessment of baby "H" on Saturday and although I'm still a little small for 34 weeks, our little gal is growing just fine. He anticipates she will be slightly smaller than Ashley and Dane were at birth, but still around 7 lbs. I've been practicing my negotiation skills on him and assuming I don't go into labour on my own before about 38 weeks, he is prepared to "help me" deliver this baby at a time that is conducive to Dane's treatment schedule. Given we only have about four weeks to go, we are starting to get the house more in order for her arrival.
"Watching the counts closely" - Dane had his exam, chemo and bloodwork done yesterday and not to the doctor's surprise, his hemoglobin and platelet counts are quite low right now (his neutrophils are holding well at .75). This is to be expected given where he is in the treatment cycle, however these two counts are as low as they have been since he was initially hospitalized. We were not scheduled to go back to the clinic tomorrow, but now we are so another blood sample can be taken. His hemoglobin was 73 yesterday (normal is over 115) and his platelets were 16 (normal is between 100 - 500). If his hemoglobin drops below 70 and the platelets below 10, he will receive a blood transfusion tomorrow. This would only be his second transfusion since diagnosis and the oncologist told me yesterday that he has done "remarkably well" thus far. She and I both looked for wood to knock on in her office, as we don't want to jinx how great our strong and brave son Dane is doing fighting this nasty leukemia. He handled his IV and two leg injections like an absolute pro - he never shed a tear or panicked one bit. Everyone - the nurses, doctor, child life specialist and me - told him how proud he should be of himself. By his demeanor, I think he was very proud and that was a rewarding moment for mom.
I will post an update Friday to let folks know the outcome of his bloodwork tomorrow. In the meantime, take care everyone - Janie and Dirk