A Long Overdue Update

Hi everyone.  This update on Daniel is horrendously overdue, I know.  But at least, in this case, no news is relatively good news.  Things have been largely uneventful for Daniel and his leukemia treatment (PTL!)

First, a HUGE thank you to everyone praying for Daniel, Andrea, and all of us.  You can't imagine how comforting it is to know that others are standing with us on his behalf through all that we've been through.

Daniel remains in the 5th / final stage of his chemotherapy called the "Maintenance" phase which consists of a monthly visit for IV chemo drugs and daily drugs in pill form at home.  If all goes as planned, we'll remain in this stage until spring of 2015.

In general, he's doing well and continuing to improve.  Life has largely gotten back to a sense of "normal", though we can never completely get away from the ever-present knowledge and effects of his cancer.  The things that continue to plague him are:

1. Effects of chemo drugs.  The primary culprit seems to be Vincristine which he gets IV once a month.  It is a particularly nasty drug and has potentially long-term or even permanent side effects.  He experiences pain in his muscles and joints, much like arthritis, which is particularly bad after his treatment each month.  Usually it goes away after a week or two, but seems to be lasting longer recently.  It comes and goes, but occasionally, all 3 of us are acting like we're all 70 years old.  It would be comical if it weren't for the reasons!

2. He still dreads his monthly hospital visits.  They have reduced the number of spinal tap procedures (for which he has to have a general anesthetic - which he HATES) to 1 in every 3 visits.  That's down from 2 in every 3, so that's been really good for him.  But even the ones where he only gets an IV are still traumatic for him - he gets himself all worked up about ANYTHING having to do with doctors, hospitals, or sickness.  I've been working with him on prayer and "taking every thought captive", etc. which has helped and is, I think, getting better.  But video games are still more effective. hahaha.

3. He still takes a handful of pills every evening (not including various vitamins & supplements) as part of his chemotherapy.  They often result in mild to moderate nausea as would be expected. 

4. His osteoporosis (which predated the leukemia) continues to improve.  The last bone density scan showed marked improvement and we continue to anticipate an eventual full recovery.  In the mean time, the fractures in his spine continue to result in fairly frequent backaches & headaches that I believe are the result of muscle tension from the misalignment.  I'm trying to get BOTH of us on an exercise schedule to improve his core strength and help make that alignment better again.  Heaven knows we both need it! haha.  Though his level of activity and strength are returning, he's still got quite a ways to go to get back to "normal" 11-12 year old activity levels and strength.  He's still largely sedentary which I think is partly from lack of energy (from all the above) and partly it's just become habit.  I very much believe that more exercise will improve a lot of this as well as to build self-confidence and help break him (and me!) out of the sedentary habits that have developed over the past few years.  Heading into winter makes this more challenging, but hopefully, we can keep each other motivated!

In general though, we are VERY pleased with his progress.  There have of course been no signs of the leukemia since we initially went into remission a surprising 2 weeks after starting chemo way back in Jan of 2012.  The unfortunate part of that is that there is currently no way to tell whether the cancer is truly gone or not at this point.  It is completely undetectable.  All of the chemo treatment that remains is being done in an attempt to assure that it doesn't return.  "Relapses" are horrible.  The treatment starts over again from the beginning and the cancer itself tends to be much harder to get into remission and more likely to come back.  The thought of a relapse is terrifying - and that's why we spend more than 3 years pumping him full of poisons to make absolutely, positively certain (as possible) that every trace of the cancer is gone.  Unfortunately, since nobody knows what causes it in the first place, it's a complete guessing game as to why, how, when it might come back - or not.

One really good piece of news from the past few months is that he seems to have returned to a normal growth & weight gain curve.  He's once again outgrowing his clothes for which we are abundantly happy!  There are two unfortunate parts about this (other than the normal clothing expenses of course!).  First, the additional weight has bumped him into a higher category for the chemo drugs.  Believe me, the LAST thing I want to see is increasing doses of the chemo/poisons being dumped into his body.  Obviously, we believe it's for the best (or I wouldn't be continuing the course), but that makes it no less difficult to watch it happen - especially when you know he just barely qualifies for the higher doses and already suffers side-effects from the lower doses.



The second aspect of the weight-gain is that it's not all "good" gain.  The fact is, he's becoming slightly overweight!  I haven't computed a BMI yet, but you can definitely see in his face, chin, chest, and waist that much of his weight is not healthy.  This, in a sense, puts him over the weight category line artificially, and adds its own stresses to his system at the same time.  So it underscores the need for exercise, better diet, and less being sedentary in general (for ALL of us!)  Let's hope / pray for a relatively mild winter that will allow more outdoor activities!

Andrea remains about the same.  One really good piece of news recently was that the doctor finally agreed to try reducing her daily dosage of the chemo drug.  As a reminder, Andrea was diagnosed with a slightly different form of Leukemia (C.M.L. as opposed to Daniel's A.L.L.).  Her's, while not cureable without a full (and hugely risky) bone marrow transplant, is treatable with a drug - a single pill, once a day.  And while that in itself is truly miraculous, it is still chemotherapy and comes with all the same (plus some additional) side-effects.  For her, the most troublesome are the horrible lack of energy and the constant muscle and joint pain.  She feels like she's just run a marathon 24/7 and just getting up enough motivation to get out of bed is a major challenge every single day.  So the news that we could reduce the dosage by 25% was a huge blessing.  The jury remains "out" as to whether there's been a noticeable, lasting reduction in side-effects, but there seems to be a least some reduction.  And we'll take anything we can get!

There was a brief discussion about reducing it to 1/2 dose, but the doctor is reluctant to do that - at least not yet.  She even brought up the idea of trying to go off it completely (recall the above details about relapses).  He's very resistant to that idea, but the statistics he quoted really surprised me.  He said that about 40% of people that go off it completely have it return.  That's actually MUCH smaller than I anticipated (I figured it'd be more like 90-95%).  So that's something we remain in prayer about seeking wisdom & direction.

Thanks again everyone for your thoughts & prayers.

- Tim -