Sorry for the delay in getting this out - a really busy day yesterday, but a really, really happy one for us all. I also apologize for another really long post. I’m going to try to address the big picture for what lies ahead for Daniel here for those who have been wondering & asking – along with the possibility that Daniel may already have been completely, supernaturally healed of this. So it’s going to be long. But I’ll start with a quick summary. Please also see our Prayer Requests at the very end.
SUMMARY:
Daniel’s
chemo treatment and bone marrow test yesterday were both very successful and he’s
almost entirely without pain today. We
consider this to be nothing short of miraculous given how difficult the
procedure was for him last time. We thank the huge number of people praying for
Daniel, the doctors, and our family through all this. The test results, rather unexpectedly show Daniel
to already (after only 2 weeks) to be in remission … NO CANCER CELLS were found
in the preliminary lab tests (2 weeks ago he had around 70% cancer cells in his
bone marrow if my memory is correct).
This may or may not be due to a direct supernatural healing, but it
certainly doesn’t rule it out. It’s not “normal”,
but certainly not unheard of to show a zero count after only two weeks of
chemo. The next test in 2 weeks, may be
a better indicator as to whether something really unusual has taken place. J Daniel is doing very well and is almost pain
free; a huge difference from the first procedure. This may be because his bones
are softer from the chemotherapy, it may be because his marrow is thinner (also
from the chemo), or it may be because half the planet has been praying for our
little guy and we have a wonderful, gracious, God who’s got our little guy
firmly in the palm of His mighty hand. I
know where my money is. J
THE REST OF THE STORY:
Though
our diagnosis had changed last week back to something pretty positive, we were
dreading yesterday's test results simply because we knew they were so
important to Daniel's overall prognosis and the road that would likely lie
ahead for us. We were doing our best to walk in faith and trust that,
even with bad outcome, things were still eventually going to be OK. And despite
the enormous amount of prayer that our whole family has been bathed in over the
last couple weeks, despite our awesome our God is, and despite being in one of
the best children's hospitals in the world, it's been hard; really hard;
considering what's at stake for us.
A.L.L. LEUKEMIA & TREATMENT OPTIONS:
In general, the approach to treat this type of leukemia is to hit it hard with chemotherapy for the first month and see what happens. We’re trying to kill off all the cancerous cells in existence in his body and then let the good ones rebuild his cell counts. If the cancer responds well (by dying!!), then we continue on a regimen of chemotherapy that will last, in total, for about 3 years. The first 2 months are the worst (most intense with the worst side-effects) and then things slack off gradually out into a maintenance phase for the last couple years. If things do not go well then there are several options depending on the exact nature of how the cancer is responding. In general:
The first option is to use the chemotherapy even more aggressively and see if it can be brought under control that way. Chemo is always preferred because of the risks in the next two options
The second option is stem cell replacement therapy. This is similar to the third (bone marrow replacement). It's less invasive and has lower risk of rejection, but is also much newer and takes much longer for the patient to get back to normal if it works.
The third option is bone marrow replacement. It's dependent on finding a suitable donor and very risky. Firstly, the new marrow has to "take" (graft in well and continue to grow) and secondly, there is the possibility that the patient's (host's) body will recognize the new bone marrow cells as "invaders" and attack them like a virus. This is really bad leaving very few possible solutions.
In general, the approach to treat this type of leukemia is to hit it hard with chemotherapy for the first month and see what happens. We’re trying to kill off all the cancerous cells in existence in his body and then let the good ones rebuild his cell counts. If the cancer responds well (by dying!!), then we continue on a regimen of chemotherapy that will last, in total, for about 3 years. The first 2 months are the worst (most intense with the worst side-effects) and then things slack off gradually out into a maintenance phase for the last couple years. If things do not go well then there are several options depending on the exact nature of how the cancer is responding. In general:
The first option is to use the chemotherapy even more aggressively and see if it can be brought under control that way. Chemo is always preferred because of the risks in the next two options
The second option is stem cell replacement therapy. This is similar to the third (bone marrow replacement). It's less invasive and has lower risk of rejection, but is also much newer and takes much longer for the patient to get back to normal if it works.
The third option is bone marrow replacement. It's dependent on finding a suitable donor and very risky. Firstly, the new marrow has to "take" (graft in well and continue to grow) and secondly, there is the possibility that the patient's (host's) body will recognize the new bone marrow cells as "invaders" and attack them like a virus. This is really bad leaving very few possible solutions.
DETERMINING WHICH PATH TO TAKE
The doctors figure out which path to take by watching how well the first rounds of chemotherapy work. Initially, Daniel had a bone marrow aspiration and biopsy done to find state of the leukemia before treatment began (a “baseline”). That was 2 weeks ago when we checked into the hospital. The procedure itself didn't go well and took 2 doctors and 3 tries to get what they needed. He couldn't walk for 2-3 days afterward & said it hurt worse than the surgery to install the port in his chest. They found that cancerous cells made up 70% of his bone marrow. They determine this by taking a tiny portion of the material and looking at it under a microscope. They literally count the number of good & bad cells they see on that one slide. I believe this is done largely by computer, but not entirely sure.
Usually, they wait until the first month is complete (29 days to be exact) and then take another look at the marrow. If all is going well and responding to the chemo, then the goal is to be "cancer free" by day 29. "Cancer free" (aka "remission") does not mean there are no cancer cells left in the body; it means they can't see any on the one slide taken from the one sample of the one spot in his bone marrow. It's a good test and even with modern more advanced techniques, it still remains the basis for pronouncing a patient to be "in remission". If the patient is not in remission, then they start making changes to the therapy process (the exact, step-by-step procedure for the therapy is called a “protocol” and is created and shared by hospitals across the nation based on thousands of cases studied in various trials. Fascinatingly, these are much, MUCH better for kids than for adults. We’re pretty thankful for Daniel’s sake that the children’s hospitals do such a great job with these studies and sharing information. That the adult hospitals don’t share this level of scientific discipline and communication is infuriating. We’re trying to get Andrea moved to Riley, but so far no luck. He he. :-)
As I stated though, “remission” at this point does not mean there are no cancer cells anywhere in the body. Only a single cancerous cell anywhere in the body is capable of starting the whole thing over. And “recurrence” as it is called, is much nastier and harder to treat. So the chemotherapy continues for about 3 years to make absolutely sure they get every last cell.
The doctors figure out which path to take by watching how well the first rounds of chemotherapy work. Initially, Daniel had a bone marrow aspiration and biopsy done to find state of the leukemia before treatment began (a “baseline”). That was 2 weeks ago when we checked into the hospital. The procedure itself didn't go well and took 2 doctors and 3 tries to get what they needed. He couldn't walk for 2-3 days afterward & said it hurt worse than the surgery to install the port in his chest. They found that cancerous cells made up 70% of his bone marrow. They determine this by taking a tiny portion of the material and looking at it under a microscope. They literally count the number of good & bad cells they see on that one slide. I believe this is done largely by computer, but not entirely sure.
Usually, they wait until the first month is complete (29 days to be exact) and then take another look at the marrow. If all is going well and responding to the chemo, then the goal is to be "cancer free" by day 29. "Cancer free" (aka "remission") does not mean there are no cancer cells left in the body; it means they can't see any on the one slide taken from the one sample of the one spot in his bone marrow. It's a good test and even with modern more advanced techniques, it still remains the basis for pronouncing a patient to be "in remission". If the patient is not in remission, then they start making changes to the therapy process (the exact, step-by-step procedure for the therapy is called a “protocol” and is created and shared by hospitals across the nation based on thousands of cases studied in various trials. Fascinatingly, these are much, MUCH better for kids than for adults. We’re pretty thankful for Daniel’s sake that the children’s hospitals do such a great job with these studies and sharing information. That the adult hospitals don’t share this level of scientific discipline and communication is infuriating. We’re trying to get Andrea moved to Riley, but so far no luck. He he. :-)
As I stated though, “remission” at this point does not mean there are no cancer cells anywhere in the body. Only a single cancerous cell anywhere in the body is capable of starting the whole thing over. And “recurrence” as it is called, is much nastier and harder to treat. So the chemotherapy continues for about 3 years to make absolutely sure they get every last cell.
BACK TO DANIEL:
In Daniel’s
case, they decided to do another aspiration (but not the biopsy, which involves
taking a bone chip as well) half way through the first month instead of waiting
till the end. This is probably because of the unusual chromosome
abnormality they found last week that gave us such a scare. So yesterday
was the half-way point and our first "window" into whether the chemo
was working. It wouldn't change the treatment for this first month
regardless of the results, but it would tell us pretty clearly whether he was
responding and what lay ahead for us. And we were all really nervous about it. Daniel of course was
really dreading the procedure itself and was also, and rightly so after the
first one. But he was also really
anxious about the results.
YESTERDAY’S PROCEDURE:
Having learned my lesson during the first procedure, I stepped outside the room while they performed it. Now in my own defense, I do NOT have a weak stomach! :-) I've watched dozens, maybe hundreds of procedures for everything from face transplants to brain surgery to hip replacements to open heart surgeries on TV. I've watched several actual procedures, both live, and through the endoscope on Andrea, and was personally present in the OR during Daniel's C-section birth. Such things have always fascinated me, and if I had a better memory, I’d have likely gone to med school myself. But two weeks ago, when they performed this simple procedure on Daniel, I very nearly passed out ... twice!! I had to leave the room and sit down and even that wasn't enough. I actually had to lay down on a bed in the recovery room to keep from going out. Once I recovered, I went back in, but had to leave again in less than 2-3 minutes. It wasn't the procedure, it was the fact that they were doing this to my beloved son Daniel. I learned something about myself. And though I desperately wanted to be there for him, it wouldn't have been helpful to anyone for me to end up as a distraction on the floor! So I stepped out of the room. Fool me once …
No more than 4-5 minutes later, the door opened and they were done and Daniel was already awake and ordering lunch!! I was shocked. My immediate thought was simply PRAISE GOD!!! And my second thought was that this was clearly a direct answer to an enormous number of prayers offered up by people literally all over the world on my son's behalf. I cried.
Within about a half an hour (shockingly fast actually) the doctor showed up (we hadn’t seen her at all yet that day as she wasn't even working the clinic yesterday. But went straight to the lab after Daniel's procedure to learn the results and came to report them straight to us. I REALLY like Dr. Hege! :-) She walked in with a big smile on her face and reported that here, at only week two, Daniel had ZERO cancer cells found on the slide and was now considered in remission. You could have knocked me over with a feather. All three of us cheered! I proceeded to grill the doctor with technical questions (as they’ve apparently come to expect now) as well as making it clear to her that we were not upset with her at all for last week’s confusion about the genetic test results. She was grinning from ear to ear along with us.
Having learned my lesson during the first procedure, I stepped outside the room while they performed it. Now in my own defense, I do NOT have a weak stomach! :-) I've watched dozens, maybe hundreds of procedures for everything from face transplants to brain surgery to hip replacements to open heart surgeries on TV. I've watched several actual procedures, both live, and through the endoscope on Andrea, and was personally present in the OR during Daniel's C-section birth. Such things have always fascinated me, and if I had a better memory, I’d have likely gone to med school myself. But two weeks ago, when they performed this simple procedure on Daniel, I very nearly passed out ... twice!! I had to leave the room and sit down and even that wasn't enough. I actually had to lay down on a bed in the recovery room to keep from going out. Once I recovered, I went back in, but had to leave again in less than 2-3 minutes. It wasn't the procedure, it was the fact that they were doing this to my beloved son Daniel. I learned something about myself. And though I desperately wanted to be there for him, it wouldn't have been helpful to anyone for me to end up as a distraction on the floor! So I stepped out of the room. Fool me once …
No more than 4-5 minutes later, the door opened and they were done and Daniel was already awake and ordering lunch!! I was shocked. My immediate thought was simply PRAISE GOD!!! And my second thought was that this was clearly a direct answer to an enormous number of prayers offered up by people literally all over the world on my son's behalf. I cried.
Within about a half an hour (shockingly fast actually) the doctor showed up (we hadn’t seen her at all yet that day as she wasn't even working the clinic yesterday. But went straight to the lab after Daniel's procedure to learn the results and came to report them straight to us. I REALLY like Dr. Hege! :-) She walked in with a big smile on her face and reported that here, at only week two, Daniel had ZERO cancer cells found on the slide and was now considered in remission. You could have knocked me over with a feather. All three of us cheered! I proceeded to grill the doctor with technical questions (as they’ve apparently come to expect now) as well as making it clear to her that we were not upset with her at all for last week’s confusion about the genetic test results. She was grinning from ear to ear along with us.
SUPERNATURAL?
At that point, I decided to put my real question to her. I told her briefly about our trip to see the Christian "healer" and that he had pronounced Daniel to be completely cured. I said, "I'm not asking you to accept or believe any of this, my question to you, as a medical professional, is simply that IF this were true and Daniel had been completely healed, is there any way that we could confirm that with testing?" She stared at me for a minute, but it wasn't a look of disbelief or consternation, she was really thinking hard about my question. I spoke up again and said, "I'm really expecting to hear that there's no way to tell by the tests we have whether the results are due to really effective chemo or from something supernatural - but I wanted to either confirm that or have you tell me that there is a test that we might expect to be different if something supernatural had happened." She looked a bit relieved and confirmed what I already figured - at least for this particular test. If the results had been bad, we would certainly have known the answer. And in fact if they even had been normal (i.e. they still found a few cancer cells, but lower in number than the first test), we would have known that Daniel had not been completely healed. But the fact that we found none after only two weeks does sometimes happen with chemotherapy alone. So at this point either is certainly possible, but we can’t know for sure “scientifically”.
HOWEVER, two weeks from now, at the Day 29 test, things might be different. They will still do the same microscopic analysis here at Riley, but they will also send out the sample to a very special lab for a much more in-depth test that will look at a much larger portion of the sample. And though I didn't get as solid an answer as I'd have liked, I think she agreed with my suggestion that, if that test came back and said they found no cancerous cells anywhere in the sample, that would be an indication of something beyond the expectations of chemotherapy alone. I will still need a strong confirmation directly to me before I would consider pulling Daniel off of chemotherapy, but a genetic lab test result of zero "blasts" (cancerous cells) would be very dramatic indeed! I’ll be talking further with the docs if we see something like that in two weeks.
CURRENT STATUS:
As of
today, Daniel is doing well. His appetite has been VORACIOUS and he’s put on
over 7 pounds in the past 2 weeks – that’s more than 10% increase in body
weight. Think of 10% of your own body
weight to get an idea of what that means for him. He’s gotten up at 5:30 or even 3:30
starving and unable to sleep several times with strong food cravings. This is becoming it’s own concern, not just
for the rapid weight gain, but it’s having effects on his digestive tract as
well. This is an expected side-effect of
the steroids as is additional swelling around the face and neck making him look
even bigger than just the weight gain alone.
He’s embarrassed about it and we’re working with him to put limits on
what and the amounts he’s allowed to eat, but it’s being hard on him either
way. He’s beginning to have more trouble
with indigestion and sores in his mouth (One of the chemo drugs attacks the
lining of the digestive tract and can cause these sores throughout.)
His blood
cell counts were also the lowest we’ve seen them yesterday. They gave him transfusions of both red cells
and platelets. Unfortunately, white
cells can’t be transfused since each white cell must be individually “programmed”
by our bodies or they will actually consider a new body to be an “invader” and
attack it. So Daniel is even more at
risk of infection and will likely continue to be for at least the next couple
weeks. After that we hope to see his own
healthy cells starting to come back again.
PRAYER REQUESTS:
Please
pray that ...
On-Going:
Above all - that the lessons available to us all in this trial would not be lost or minimized, and that our wonderful God would be glorified through it all.
Above all - that the lessons available to us all in this trial would not be lost or minimized, and that our wonderful God would be glorified through it all.
1. Full healing for Daniel and direct, clear confirmation to Dad - whether
supernaturally, or through docs / test results.
If the above is NOT in God's immediate will for us, then...
2. Daniel's blood counts (red, white, platelets, & hemoglobin) will return to higher levels quickly
If the above is NOT in God's immediate will for us, then...
2. Daniel's blood counts (red, white, platelets, & hemoglobin) will return to higher levels quickly
3. That Daniel will NOT get any type of infection during the course of his
treatment (while his immune system is compromised)
4. That the side-effect of the chemotherapy will be minimized (ravenous
appetite, hair loss, immune system suppression, damage to internal organs &
other tissues, etc.)
5. "Love, joy, peace, patience, goodness, kindness, gentleness,
self-control" (you should recognize that list), along with strength,
courage, faith, and hope for all us.
Current Issues:
Current Issues:
6. Continued healing for Andrea’s cold and that the rest of the family will not
catch it (Daniel, Tim, Dan, Sherry)
7. That Andrea’s own side-effects from
her chemotherapy (she gets hers daily in the form of a pill) will be minimized
and that she will have the energy and positive attitude to continue to cope
with all this and care for Daniel while I’m away at work or working on the
house)
8. Daniel's appetite, cravings, etc. will
be better controlled to minimize the weight gain and impacts to his digestive
system and health.
9. That we will be able to get the house thoroughly
cleaned back together in short order so that we can all get back home ASAP.
10. That my folks, who have been so gracious
and patient with us will remain so, will have minimal impact to their own
lives through our stay with them, and will be blessed powerfully by God for
their gifts and grace toward us.
Grace and Peace to all
- Tim -
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