Whoever said "No news is good news," needs to have their head examined.

Posted Jan 26, 2010 9:50pm

We had the car packed up with clothes, pillows, blankets, food, etc for the 2nd time, ready for Chase to be admitted. Egleston called yesterday to remind us of his clinic appointment today, reminding us that he wasn't to have any food and only clear liquids after midnight since he would be having a bone marrow aspiration. A bone marrow aspiration? I thought perhaps it was a mix-up or something they had scheduled "just in case". After all, we were going back to the hospital to find out what the molecular-level bone aspiration results were from LAST week.

Once we arrived, they informed us that they were, in fact, doing a bone marrow aspiration, but we still had not heard the results from last week. Dr.Cooper stopped by the procedure room where we were waiting to speak to David and me. Chase was napping, so we walked to another room to talk.

The result?

The tests were inconclusive!!

Some measure of good news is that the BCR-abl test was negative. Although Chase had shown signs of the Philadelphia chromosome last time, which is an indicator of CML (chronic leukemia), he is showing no signs of it. Big sigh of relief!

However, the molecular results of his Leukemia cells show that they are not the same type that they were last time. Although Chase has the AML form of Leukemia, there are subtypes of AML broken down into classifications by chromosome abnormalities. Last time he was diagnosed with Inversion 16, which is one of the most favorable subtypes to have because it responds the best to treatment. In Inversion 16, the 16th chromosome (from what I understand) breaks apart and re-attaches upside down. From what Dr.Cooper told us today, what they are seeing isn't a "normal" inversion - the inversion wasn't complete.

As of right now, we don't know what the percentage of blast cells are in his blood stream and marrow. We should (fingers crossed) know that information by Wednesday (1/27). If there is a higher saturation of blast cells in the marrow, I think they will be able to make a (somewhat) definitive diagnosis that he is having a relapse, and outline some type of treatment. Dr. Cooper spoke of perhaps admitting him later this week or early next week as long as the percentage is within acceptable ranges.

What we also know is that his blood counts (red, and platelet counts) are lower, but not significantly. His white blood cells have increased, but that's to be expected if he now has more blast cells in his bloodstream. If his blasts are still at a low percentage, then they will have him come back weekly for bone marrow aspirations until the results are able to present a clear diagnosis.

Chase, of course, was thrilled to get to come home, and we're very happy to have him home. But honestly this has us in knots. It's mentally exhausting to prepare yourself for being admitted (including packing), and then be told to go home again. I'm not a fan of rides that disorient and make me feel like my stomach is still on the ride after I get off. Unfortunately, that's how I feel right now. You know, it probably wouldn't be so bad had I actually gotten to enjoy the ride first - not in this case.

I have to commend Dr.Cooper who was wonderful today. He knows how this is affecting us, and even he wishes he could tell us something. While we were waiting, he put in a call to the Director of the Aflac Cancer Center, Dr.Woods, who is the past President of the Children's Oncology Group (COG), and to the current president of COG, Dr. Adamson to get advice on Chase's case. Both agreed that for the time being, no treatment and continued bone marrow testing is the best path until something conclusive presents itself.

So, if the next time you see me I appear to have a few spots where my hair appears thinner - you'll know why. Your continued prayers are, as always, very welcomed! If we receive any updates, I will pass them along.

Thank you so much for the prayers and support!

Chase's 1st Day back at Egleston and a turn of events

Posted Jan 19, 2010 6:24pm

In case this message is the first word you've received about Chase's health, I'm going to provide a brief overview of what has happened in the past week. January 13, 2010, Chase went in for his monthly appointment at Egleston. They always take blood and vitals at these appointments to track his blood counts. Later that day, we were told there were Leukemia cells in his bloodstream. Apparently, the tech who first took a look at his sample saw cells that didn't "look right". She referred his sample to Dr.Keller who ordered them to be looked at under a stronger microscope, which confirmed that Chase's Leukemia has come back.

Thankfully, his relapse was caught very early. The percent of "blast" cells in his bloodstream is very low, which means that they are not affecting Chase's health at this point. The rest of his counts are still low and would not be within normal ranges (like ours are) for another four months at least due to his prior treatment. However, almost all of his counts are out of the "low" range, so overall between his counts and his current weight, he is a great deal more healthy than he was at his initial diagnosis last March. That in itself will help Chase during this course of treatment.

Chase, because he has relapsed, will automatically have a bone marrow transplant. We are so blessed that William is a match for his brother and will be able to provide that for him. Only 25% of siblings are a match, and transplants from a matched sibling have a higher survival rate and less complications than unmatched transplants.

Before he can have a transplant, Chase will undergo chemotherapy again, but not to the extent that he did last time. Chase responded so well the first time, the doctors expect him to respond well this time as well. He will have one round at first and be in the hospital for three weeks and then home for a week or two. If he goes into remission, then he will be "turned over" to the transplant team. If he does not go into remission, then he will have to have another round of chemo.

Once turned over to the transplant team, he will have a far stronger chemo that will destroy his bone marrow to prepare his body for the transplanted marrow. At this time, I can't explain how William's marrow cells will be donated or the time frame. We will learn more once we have met with the transplant team in the coming weeks.

When we told Chase that his Leukemia had returned, he was shocked like we were - both he and William. Chase, because he had such a horrible time with his CVL (central line) the last time, was immediately concerned about having to get another one and the duration of his treatment. Once he learned that he wouldn't be in the hospital for another seven months, he was visibly relieved. We explained to Chase that he is far healthier now than he ever was back in March, and that his current health would make his treatments easier to withstand. Although he didn't want to discuss his impending hospitalization and treatment, he has been in good spirits overall.

William is understandably nervous about his role in all of this. The last time he had to give blood (two vials) he almost hyperventilated on me. He said, and I quote "They better put me to sleep whatever they do." I assured him that as soon as we knew more about the procedure, that we would let him know.

The first step was for Chase to get his CVL (central line) put back in, which happened today, Tuesday January 19th. His surgery went extremely well and he was in recovery about 45 minutes ahead of schedule. They also did a bone marrow aspiration and a spinal tap while he was under.

I went to his room on the Aflac floor before he was brought up and was greeted by Rebecca, his primary nurse on his team. She came up to me right away and gave me a huge hug. I can't express how good it felt to walk in and have people here who know and care about us. It makes a huge difference! Rebecca said she learned yesterday about Chase coming back and insisted she be here for him. I thanked her for being here for him, and judging from Chase's interaction with her, I think it helped him a great deal to have someone who he is so familiar with be here when he arrived.

After we got everything unpacked, Rebecca told us that Dr.Cooper would be coming up to speak with us. We asked if Chase could wait until tomorrow to begin chemo, so I assumed he would be going over the schedule for his therapy. However, what he had to say was unexpected. Apparently, when you have Leukemia blast cells in your bloodstream, you typically find a high saturation percentage in the bone marrow as well. But this isn't the case with Chase. He only had about 5% saturation in his marrow, which is NOT typical at all. That being the case, he did not want to begin chemo treatment right away without knowing all of the facts from the detailed test results. Those tests are only done on Mondays and Thursdays at Emory, so we will not know the full results until next Monday. So what does this mean? Chase will spend tonight in the hospital, and then get to go home until next Tuesday when the results are in. At that time, he will more than likely begin chemo.

Dr.Cooper feels that there is a 95% chance that this is a relapse. He did mention the chance that the Leukemia cells they're seeing could be particularly stubborn ones that were resistant to the initial treatment. Until we have the molecular level results back, there is a lot of speculation going on right now, which warrants NOT beginning therapy at this time.

Personally, I am both relieved and let down. On the one hand, I had geared myself up for this mentally. However, I am VERY pleased Chase now has time for his CVL to heal before chemo, and to get a better grasp on his situation so his treatment plan can be adjusted accordingly. He certainly wasn't a textbook case during the first go around, and it doesn't appear that he will be this time either. Dr. Cooper added that at this low concentration level, the blast cells are not causing him any harm, and he will be okay to wait another week.

So, Chase and I will spend the night tonight and return home tomorrow. Some of the test results will be in on Thursday, but I'm not sure if they'll call us or wait until both are available. I will keep everyone posted on what will happen next as the news comes in.

As always, thank you so very much for all of your continued prayers and support!! We draw so much strength from them!!

Caroline