"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