Finally Forward Motion

Posted Feb 22, 2010 10:18pm

Chase went to the doctor Friday afternoon for a bone marrow aspiration and spinal tap because his results from his blood tests on Wednesday had dropped so much. We didn't expect to learn anything until Monday, but Dr.Cooper called with some very preliminary results.

Chase now has 20% saturation of leukemia blasts in his bone marrow. We learned today that does in fact have blast cells in his spinal fluid. This is new for us. During his last battle, every spinal tap results were negative for blast cells. He will most definitely be receiving chemo treatments directly to his spinal fluid for this. This was a preventative type of treatment that he received last time, but they ceased giving him the treatments after the third round (I think) since there was never a presence of blast cells.

Even though his marrow blast cells have increased, the percent of blast cells in his blood has decreased by 5%! A head scratcher. However, his ANC count is extremely low making him very vulnerable to infection, even from bacteria in his own body.

Last week,Dr. Cooper told us to go ahead and pack for him to be admitted this Tuesday and had mentally prepared ourselves for it. But...aww come on, you knew it had to be coming given how things have been going, right? All kidding aside, they called today and wanted him in at 8 am to have a lumbar puncture and chemo infusion before being admitted. Since we're an hour away, plus with Atlanta traffic, we would have had to leave the house probably by 6:30. Not happening. Instead, we were able to move his appointment to Thursday at 10:00, which will be better for everyone. And Chase was very pleased to learn that he would have a couple more days at home, too.

The waiting for Chase has been a double-edged sword. He likes being home, but he can't stand that his life is "going no where" as he puts it because of the leukemia. (Insert image of a stuck car's back wheels hopelessly spinning in the mud.) I hate that he has to go through this, but I know he'll be much happier to have this behind him. On a very positive note, having a sibling match in his brother means the duration of his bone marrow transplant treatment may only be for 3 to 4 weeks! Best case scenario, he'll be there 20-ish days for the 1st round of chemo, come home for a brief stay, and then another 3 - 4 weeks for the final chemo/transplant phase.

So, we can finally dust off and/or zip up the suitcases that we never really unpacked back from January, and make sure we bring plenty of Snowballs, Twinkies, and some instant soup cups (aka - salty noodle soup) for Chase. Oh, and nachos and queso dip, too. Can't forget that! He's up to 121 lbs now and outweighs William. Since he'll probably experience a significant weight loss once again, he's been on an unrestricted diet - if he sees it, he eats it. Too bad we all can't live like that, right?

Once again, I extend my heart-felt thanks for all of the prayers and support! Thank you so much!!

Caroline

PS - I uploaded a few newer pictures of Chase in the gallery.

3 Weeks Later...Combination of Two Updates

Posted Feb 16, 2010 11:45pm

This first part is what happened 2 weeks ago. For those who know these details, you can skip down to what occurred at today's appointment.

2/3
Chase went back to Egleston two weeks ago for another weekly blood draw. Again, the tests were basically inconclusive. Unfortunately, we still ended in a holding pattern. Dr. Cooper likened it to a “black cloud” hanging over us, and I have to agree. The percent of blast cells in his bloodstream has gone up by 2%, a negligible increase. The rest of his counts remained fairly stable, but low in the "normal" ranges. Nothing is spiking, which would indicate an immediate threat to his health. It’s a double-edged sword to have the results remain consistent. You want to be happy that they aren’t drastically changing, but knowing the blast cells are still there and “simmering” is very difficult.

Under the microscope, the blast cells have been diagnosed as AML cells. However, the last two molecular level bone marrow tests are negative for Inversion 16, which is the sub-type he had last time. The abnormality with his chromosome is rare and they can’t even identify what is going on with it. I have to admit that it’s unnervingly frustrating when you have oncologists scratching their heads, too. Dr. Cooper still feels this is a relapse, but the oddity in the chromosome may be either holding it in check (somewhat) or causing it to build very slowly. That in itself goes against the normal nature of how leukemia progresses as it typically grows aggressively.

As a result of the slow growth, Dr. Cooper let Chase stay home for two weeks. Of course, Chase was thrilled as were we, but we would all feel much better with a definitive diagnosis and timeline to go by. It's very much like you're a car with the back wheels stuck in the mud spinning. You can move, but you're certainly not going anywhere. For a 14 year old teenager, that's a very hard pill to swallow.

2/16

Chase went back in for a blood draw, and if the past results weren't confusing enough, then these today were yet another head scratcher. All of his counts are dropping, most of which are now either at the very bottom of the "normal" range or have radically dropped beneath that level. Even his white blood cells have decreased, but he now has 18% saturation of Leukemia blast cells in his blood stream. Now, if you've followed how Leukemia works, one of the "signs" they look for is an elevated white blood cell count, not a low one. When he was first diagnosed, his white blood cell count was 140,000, but his has actually decreased while the blast cells have increased. There's no explanation for this. Chase's health is still stable, but since his counts are getting low enough to cause concern and not following a predicted pattern, they want him to come back in on Friday for a bone marrow aspiration and a lumbar puncture (spinal fluid tap). If his counts are found to be high (in the marrow itself I would assume), then they'll admit him next Tuesday to begin treatment. If not, then they'll wait for the molecular level test results to come in and proceed from there.

So, yet again, we're in a holding pattern, but it seems that we're possibly moving forward a bit. Dr.Cooper said that this kind of a slow moving relapse happens in only about 10% of patients, but this chromosomal abnormality is not generally what presents itself at all. That still remains unresolved. Dr.Cooper did say that 75% of children who have relapsed go back into remission after the 1st round of chemo. Based on how well he responded to the first round of chemo during the initial treatment, we would expect him to go into remission easily this time as well.

I will most definitely update on Friday once we know something.

On a lighter note, Chase enjoyed the snow on Friday, making snow angels and sledding down a hill in our neighborhood even after the sun had set. It was great to see him willingly get outside. He was completely soaked, pink cheeked, but quite happy when he finally came inside.

As always, thank you so very much for all of your continued prayers and support. They truly mean the world to us!

-Caroline-