First, I would like to wish everyone a VERY Happy Easter! Chase woke up this morning before 7am to go to the restroom and I woke up as well. When I realized that Sunrise Service was a little more than 30 minutes away, I decided to attend. The service was held in the garden area of Egleston Hospital, which is really beautiful. I need to take some pictures of it. I would say there were about 20 people in attendance - a mixture of both parents of children and Egleston staff. It was a beautiful morning, not too cold either, and it was a wonderful service.
On a somewhat funny note, the pastor told us that his two "songbirds" weren't able to make it this morning, so we were left singing a capella. There weren't many there who could carry a tune without accompaniment, myself included since the songs weren't familiar, but a joyful noise we made regardless!
Okay, so let me back up a couple of days to Friday before I arrived. Chase had a great night the evening before. He did have a nosebleed, but it occurred before he went to bed, which I was very thankful for. I know how much he hates having them after he has gone to bed, so at least he didn't have to be woken up by it.
Chase's platelets and white blood cell count continue to lower, but David was told that we didn't need to focus so much on the WBC any longer, but look at the ANC instead. That stands for Absolute Neutrophil Count (ANC). The ANC is "a test used to measure the amount of WBCs you have to fight infections" (source http://www.reddlegg.com/Leukemia/what_is_leukemia.htm). 1000 or below means the immune system is compromised. 500 or below exposes you to a high risk for infection. Chase's ANC on April 10th was 300. The doctors have been telling us that typically leukemia patients have developed fevers and/or other illnesses by this time. The fact that he had not was pleasantly surprising to all of them. I'll come back to talk a bit more on this later.
Visitors!
David's good friend Lance and his wife Tera came by for an extended visit and brought a box of Krispy Kreme donuts. I heard that Chase and Tera played a few rounds of Pente together, but I can't recall who won. I know Chase and David both enjoyed the visit. Chase seems to get a nice little surge from them!
Honestly, when I arrived Friday night, I expected to have a bald child. Robert, one of Chase's associate nurses who has loads of experience cutting hair, came by on Wednesday and said that he could shave Chase's head. I thought he had mentioned doing it on Thursday, but when I showed up, he still had a head full of hair.
Friday night, Robert dropped off the "clippers" box along with a few extra towels for when he had a bit of time to shave Chase's head. Just when we thought he might have a lull in his schedule, the hospital came under a tornado warning! Oh joy! We all had to be moved into a central waiting area away from hallways. Thankfully, we weren't there long at all.
Chase and I started watching "Meet the Parents", which he loved (such a great movie) as I was Plurking a bit. We both got distracted by a YouTube video that Kymberli M suggested Vdub144 (Dan) watch when he made a comment about singing in a round by yourself. Impossible? No, it's not. Watch this incredible movie. This guy is amazing and Chase and I forgot about the movie for a bit as we watched it. http://www.youtube.com/watch?v=lk5_OSsawz4 - Hint: Let the movie load before watching it!
Once that distraction was out of the way, we got back to the movie and then Robert showed up!! Shaving time!!! Needless to say, I have pictures and movies. And if you read this before I have had a chance to post the pictures, trust me, I'll post a few on here before and after. Chase was ready to go and pretty much had a smile on his face most of the time. He did have one small request and that was to have his troop's number cut into his hair before it was all shaved off. Now, given that Robert didn't have a small, fancy shaver for doing intricate designs, I thought he did a pretty good job and Chase was very pleased.
Although his hair has yet to begin falling out, Chase has always like his hair ultra short. It's never been THIS short, but he's really pleased with how he looks, and his his words, "I looks goooood." Yes, my child doesn't have a vain bone in his body - ahem. As a mom, I just can't wait to see him alongside his brother, William, who HATES having his hair cut. So, now I have Shaggy and Curly for sons :)
His haircut was really late, but we finished our movie. He went to bed around 1am, but I couldn't get to sleep. It probably had something to do with that Starbucks London Fog (black tea latte concoction - yummy) that I had on the way to the hospital. I just couldn't get to sleep! I discovered that the only time you can count on a hot shower/bath around here is late at night or really early in the morning. Since I was awake, I indulged in a nice bubble bath with Eucalyptus-Mint Stress Relief aromatherapy bubble bath - Ahhhh!
Saturday, my mom came over. I was going to keep on sleeping, tried to at any rate, but then Dr.Alexander and Dr.Cooper came by for a visit. As I've written before, Chase has two different types of leukemia (CML and AML). They (the doctors) had told David some information about one driving the other and how it would affect Chase's treatment, but I was a bit confused about it all. Things seems to shift as new information arises, so I was so pleased they both were here for me to ask questions.
It was explained to me that the Philadelphia chromosome (consistent with CML and treated with an oral drug Gleevac), although present, may be a "driven" by the AML. I'm still not quite sure what that means, but from what they were saying (and I'll see if I can learn more about it today), the Philadelphia chromosome may not be "formed" exactly as they are used to seeing with CML patients. Again, let me say that I may have misheard that, but will see if I can get some further clarification.
Keep in mind the Philadelphia chromosome occurs within AML patients only occasionally. This is a rare occurrence, especially for a pediatric patient. I've mentioned before that they were going to consult with some Emory doctors who treat adult CML leukemia. I was told that they have done that, and then some. When I asked them what the next steps for Chase would be, they said right now there is no clear path. They have not only consulted with Emory leukemia specialists, they've been consulting with specialists from ALL over.
A few friends of mine have been saying that perhaps Chase's situation would draw a lot of attention among leukemia doctors since it is so rare, and from what I was told yesterday (Saturday), that sounds like it's true. Dr.Cooper mentioned a couple of times that doctors all over the United States are being consulted. Granted, no parents wants their child to be diagnosed with anything like this, but I'm pleased that he has so many experts consulting on his case.
Both doctors continued to emphasize how incredibly well Chase is responding to treatment. They've mentioned this just about every time that I've seen them, which does my heart SO much good! The power of prayer!!!
What they will most likely do is perform another bone marrow aspiration (sampling of bone marrow) in a couple of weeks to look once again at the chromosomes and leukemia cells. If they determine that the AML is "driving" the CML, then we could be looking again at the 5 rounds of chemo with a possible bone marrow transplant. If he does indeed have true CML, then he'll still need another round of chemo, but if we have a family match for bone marrow, then they'll look at a transplant after the 2nd treatment.
All of us have been tested, and we should find out our results by the time they would schedule Chase for his bone marrow aspiration. If my sleep addled brain is putting all of this information together correctly, we'll have a much better picture of what his treatment will be in 2 weeks.
Now if there is not a family match, then they'll have to go looking for a donor and I would assume the treatment plan will be altered from what I provided above.
Please pray that one of us is a match for Chase! I know everyone has been praying for Chase up until now, but I'm asking for a bit of "refinement" if I may?
Oh, I forgot!! Chase received a blue and white bunny as part of an Easter basket from some of the Boy Scout leader wives. They were teasing Chase about me "planting" the bunny on him as he slept and snapping a couple of pictures. Well, I tried doing that was caught!! I waited a bit longer and ended up with two pictures. Once Chase realized what I had done, he practically jumped out of bed to get to my camera to delete the pictures. The wise and slightly twisted mother that I am, I promptly used the images to bribe Chase into a series of tasks - eating, drinking plenty of fluids, and getting up to walk around a lot. Oh, and his fluid "output" has been decreasing a bit, so the threat of him going back on the IV fluids also helped with my cause.
Chase drank very well yesterday, I'm pleased to report and when asked what he wanted for breakfast - even though it was already past 12pm - he asked for a peanut butter and jelly sandwich. I had no problem with that! He ate most of it plus two cartons of milk and then it was Happy Tails time. No, not story time - tails...as in the ones that wag!
Chase LOVES dogs, and once a week this group of people who have specially trained dogs come to the hospital for the patients to spend some time with. Let me just say how beautiful and sweet these dogs are!! I think Chase would have taken them all home if he could. His favorites were the two pugs, a Newfoundland, and a Great Pyrenees. Again, pictures will be posted. I thought the Newfoundland and the Great Pyrenees dogs were amazing. HUGE dogs, but incredibly gentle and sweet. It was the Golden Retriever "Samantha" that I liked a lot. She reminded me of Maya, just loving having the sides of her face scratched.
After the dogs, we returned back upstairs and hung out and got two bags of platelets until friends of my parents, Mark and Judy, dropped by for a visit. They brought Chase a 3-tiered round box of Easter candies. Chase has received quite a bit of candy around here this past week, but since he's lost 6 lbs to date, I and the hospital aren't fussing about what he consumes. I try to balance as much fruit into his diet as I can though, and we shared an apple with peanut butter - one of his favorite snacks and mine, too - Friday night.
As has become our habit, Chase and I were snuggled up together on his bed as we watched a bit of TV. I leaned over to kiss his stubbly head and realized it felt hot. I took his temperature and it was 38c, which is just over 100F. Leukemia patients aren't considered to be having a fever "spike" until 38.5, but by 11:00pm, hit temp was at 38.6. It's not a bad fever spike (thankfully) and not unexpected. This is part of the process in rebuilding is WBC. He's going to be susceptible to fevers and such and so far, he's held them off quite well!
Unfortunately for Chase, this means he's BACK on the IV pole for constant fluids and antibiotic infusions. He's not thrilled about that at all since that seriously hinders his mobility, but he's handling it. As of this morning, his fever is down to 37!!! Normal!!! Yes!!!
So, now he's back to getting labs drawn for 3 days to scan for infections. He's getting blood today, but nothing else planned except for an Easter family visit to share lunch. I'll update quickly if his condition changes, but so far, so good.
Please enjoy your family time this Easter Sunday and thank you from the bottom of my heart for your continued prayers!!!
The O'Bannon Family
c/o Caroline
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