Saturday, June 13, 2009

6/13/09 Lord of the Teen Room

Posted Jun 13, 2009 4:41pm

Chase completed his chemotherapy last Sunday (6/6) and slowly but surely his energy level and appetite are coming back. Unfortunately, he has suffered a weight loss while his appetite took a hiatus. Just this past week he weighed in at 102lbs. He was 107.8 when we checked in. Thankfully, he is eating now. I don't have to twist his arm to get him to eat, so my mission between now and when his counts come back up is to put those 5 lbs BACK on his bones and hopefully a bit more.

The big news this week....

The TEEN Room opened! Woo-hoo! The day it opened, Chase was the only teen on the Aflac floor so he was given the honor of cutting the ribbon with these huge scissors. David got some pictures on his phone of the whole thing as did the Family Life people. Hopefully, we can get them posted soon. Lucky for him, since there haven't been many teens on the floor, he has had the room basically to himself. Every time a nurse comes in the room looking for him, he's been in the teen room, sometimes for several hours.

They did a great job with the room, too. They have a very nice Samsung flat panel TV on the wall. I think it's about 40". They have a PS3 and Xbox 360 attached to that, which Chase has been playing a lot since he refuses to bring his own Xbox 360 to the hospital. They have a Wii (on a different wall), a dart board, a computer, and a touch screen game system that has a bunch of different puzzle and strategy games in it. And finally, they have a revolving table that has 3 sides with Foosball, Pool, and Hockey - not air, but moving players. I personally LOVE Foosball, but Chase has now refused to play me since I beat him 5 straight games. I was going to "let the Wookie win", but kind of forgot. I even offered to play him one-handed, but he still won't go for it. Oh well. Maybe he'll forget soon enough and I'll get a second chance.

Camp Sunshine starts tomorrow (the 14th), but Chase will not be going. We're not happy about it, but since his counts are nearing bottom, it would be too dangerous for him to be exposed to so many other kids, even if he kept a mask on. Camp Sunshine does offer Fall retreats and other events that he will be able to take advantage of though in the future, and next summer he'll be able to go to camp. It's a bit of a disappointment, but they're supposed to be doing some activities here at the hospital for in-bound patients.

On a bright note, there are teenage volunteers, called Volunteens, working at the hospital this summer. Chase has a 17 yr old Volunteen named Patrick who has been by twice and who comes twice a week. It's great for him, because it gives him someone close to his age to hang out with and play chess and video games with as well. Chase is very interested in becoming a volunteen himself next summer. I think that would be great for him, as well as for other patients, since he's been here as a patient. We'll definitely look into that.

That's about all for this week. It's all a waiting game right now for his counts to crash. I guess it's a good thing, but kind of annoying that his bone marrow has been described as "stubborn and strong" because it's taking its time to crash. He's been in the hospital for 12 days and we estimate that he'll be in here for another 10 to 12 days before he can get a break. So, until that time...we wait.

I hope that everyone is enjoying their summer! God Bless and thank you for continuing to keep Chase in your thoughts and prayers.

The O'Bannon Family

Saturday, June 6, 2009

6/06/09 Chemo Stinks!

Posted Jun 6, 2009 2:14pm

Chase had 11 great days at home this time between his chemo rounds, which was longer than the 1st time he was able to come home. We had a great time, too. There have been quite a few movies that have been released while he was in the hospital, and we were able to go see both Star Trek and Terminator Salvation. Chase highly recommends both by the way if you haven't already seen them. He also wanted to see Wolverine and Night at the Museum Battle of the Smithsonian, but those will have to wait for DVD most likely. William and I ended up seeing Night at the Museum though on our own after Chase went back into the hospital and it was good as well.

Chase and William also had their friend, Robby, spend the night. We took all three boys up to Stone Mountain for an evening of fun at the Sky Hike, which is a three-level ropes course. You're tethered the entire time with a hook that is inside a track above your head to hold you up in case you loose your footing. I did the first level with the boys as did David, and before the end of that first level, I was almost minus one child when William decides to shake the rope I was walking on. He said it was more fun that way...I disagreed.

David called it quits after the first level, which is 12 feet off the ground, especially when the boys decided to go up to the third level, which is 40 ft off the ground!! I was determined to at least do one more level, so I headed off with them. Not so sure that I'll do that again though. It wasn't that bad until you hit the last set of ropes that are nothing more than swinging U-shaped ropes. You're tethered, but it still is scary.

The next night, Chase and William were able to go to Boys Scouts and also took Robby with them. I was really happy for him that he was able to go. Aside from attending the Court of Honor, that was the first Boy Scout meeting that he's been able to attend since late March.

But all good things must come to an end, and Chase was readmitted to the hospital on June 2 for his 3rd round of chemo. Before he came up to the Aflac floor, he entered through the clinic where they did another bone marrow aspiration (sampling), spinal tap, and infusion of chemo into his spinal fluid. He went through it without any problems! We won't get the analysis results for probably two weeks, but preliminary exams of his blood by his doctor showed no signs of leukemia cells in his blood - hooray! Hopefully, when the result come back they will show that the Philadelphia chromosome is either still barely detectable or no signs of it at all.

Before they could perform either test, Chase had to be sedated. He likes to try and fight the sedation though, and this time was no different. He's hilarious, too. He was sitting up as it was being administered saying, "Never." As in he was never going to sleep and then shaking his head to try and clear it from the fog of the sedation. Finally, his eyes rolled and he fell back on the pillow. That was our cue to exit until the procedure was over.

Good new though....we are back on the "big room" wing of the floor! No longer packed like sardines. This room isn't as large as the great big room we ended up in the first month, but considerably larger than the one we had last month. Chase even went to go check it out and saw that it was empty and wanted it back, mainly because he could see into the play room easily to see who was in there. However, having the larger room means that it is easier for William to come spend the night. Not to mention that the couch/bed I have to use is FAR more comfortable as well.

So, we're now settled in our home for the next month. Chase was fussing at first about the nurses. "Robert left me," he said, because Robert had to spend some time on the BMT (Bone Marrow Transplant) wing as did Rebecca. He was getting all new nurses at first and, "None of them are any fun." Eventually though he has gotten Rebecca, Robert, and Marlene back so he's much happier. It's funny how we get attached to certain nurses, but I feel like they make a real different in him. They know Chase, his personality, and they really take time to talk to him.

Now onto the reason why I entitled this update "Chemo Stinks!". We were warned that the 2nd round of chemo would be the easiest, and it was. Chase had little no problems with it, had plenty of energy, was barely sick, and had no fevers. This round is shorter by 3 days and only has 2 chemos administered, but the concentration of chemo is much stronger and he is feeling it unfortunately. He has been battling low-grade recurring fevers (less than 101 F) daily and extreme fatigue. Although he checked into the hospital weighing 107, he's now down to 104.7 because he has had very little appetite. On Wednesday night, he was very sick all of a sudden and threw up along with a higher fever. He's had small bouts of nausea, but hasn't thrown up again thankfully. Also, his fever hasn't hit a high enough level that going back on the "pole" for 3 days for fluids and antibiotics were necessary.

Right now, I am battling him to eat and drink. He's going back on the pole tonight for fluids unless he consumes enough on his own. Robert has been threatening him with that since last night. He was also fussing about Chase sleeping too much and said that he was going to give him a wake up call this morning, which he did. Granted I had already gotten him up, but barely. Robert has learned that Chase likes to hear stories and he's promised to tell Chase about a pretty back wreck that he was in, but first Chase has to drink a significant amount and walk out to the nurse's station.

Chase's chemo should be done by Sunday, and then it's a matter of waiting. We're just hoping that his counts will rebound quickly enough for him to go to Camp Sunshine. Right now the schedule doesn't looks too promising for that as the camp starts on the 14th, but we're going to pray that it will work out for him.

Thank you for continuing to keep Chase in your thoughts and prayers. It means a great deal to all of us and we're extremely fortunate to have such a wonderful network of family and friends to support his treatment and recovery.

God Bless and please enjoy your summer weather!!

The O'Bannon Family

Saturday, May 23, 2009

5/22/09 - And he's home!! (Again)

Posted May 23, 2009 12:02am

Last month Chase's counts rebounded quickly and he was able to come home by Day 24 after he was admitted. We were hoping he would be able to keep to that schedule this month as well, but it's all a matter of how his body responds to the "attack" of the chemo.

We were told earlier in the week that he was looking good to come home Memorial weekend, which is exactly what we were hoping for. However, Chase shocked us all when we learned that Thursday morning they were talking of sending him home THAT day!!

But let me backtrack a bit...
Unfortunately, Wednesday night when I arrived at the hospital I was completely wiped out. I dropped my bags and asked Chase if he would be okay if I took a nap. Almost two hours later, he came and woke me up. I've been tired before upon arriving at the hospital, but this was different, and I was a bit afraid that I was catching something. At 6:30 the next morning, I woke up feeling queasy and unfortunately, got sick!!

Getting sick and exposing your children to an illness is a fact of life. However, in this case, I was pretty terrified. I don't know what made me feel worse - the fact that I was sick or the fact that I was potentially exposing Chase to an illness that could keep him in the hospital when he was so close to going home. He was ONE day from going home!! One day and I had not only had to get sick, but get sick AT the hospital. I immediately went to the nurse's station to get some antiseptic wipes for the bathroom so I could clean up the bathroom. Rebecca was his nurse for the night and was nice enough to bring me a gingerale, which I slowly nursed.

I was able to get back into a restless sleep and thought I heard Chase and his day nurse talking about him going home that day. When I finally woke up, I asked him about it.

What did he say? "She said that I might be going home today."

To which I replied, "What? Why didn't you tell me?"

And he said,"Because I wanted to go back to sleep."

Chase's only problem with going home on Thursday was that he would miss Bingo night! He was actually hoping to not go home until then, but as soon as it was confirmed that he would be going home, I called David to alert him that I was both sick and that Chase was going home. What a day!

Well, Chase is now home and right back with his brother and his video games. It was a battle to get the two of them to go to sleep instead of staying up until all hours talking! Worse than teen girls I tell you, but who can blame them.

The best news they gave us was that Chase didn't have to go back into the hospital until a WEEK from Tuesday!!! Woo-hooo! So, this time we get to keep him home for longer than last time and he won't have his stay interrupted by a trip to the clinic for a bone marrow aspiration, which he'll have when he goes back into the hospital.

Chase handled this month's stay remarkably well! We have been so very blessed by how he has responded to the chemotherapy and by his health. He has definitely kept the nurses entertained with his antics such as dancing (very, very badly) around the nurse's station, running down the hallways like a goof, and surprising Rebecca with a syringe that was NOT full of water...just to name a few. He was felt so well that he's almost been wired with excess energy.

Again, I cannot thank you enough for your continued prayers for him. I see them working. We were told that this month would be the easiest of all of the rounds of chemo. Although I am realistic that the upcoming next rounds may be rougher for him, I know prayer and Chase's strength of spirit will see him through.

Thank you so very much!! God Bless!

The O'Bannon Family

Tuesday, May 12, 2009

5/11/09 - Chemo Round #2 Over

Posted May 12, 2009 12:13am

First, let me apologize for the delay between updates. After I received a few emails this week asking about Chase, I was quickly reminded that I needed to post! :)

Chase completed this round of chemo last Wednesday. It was only 8 days in total length, with 2 of the 3 meds only lasting 5 of the 8 days. Thankfully, he handled it all very well, only becoming ill (vomiting) once. From what we could tell, it was due to him not having enough food in his stomach.

I don't know what it is about the boy, but you literally have to make him eat as he rarely requests food. Ensuring that his weight doesn't drop below 100 lbs is a daily battle. He tends to flex between 99 and 101 daily. Lately, he has taken a liking to the grilled cheese sandwiches that he can order in the cafeteria and also to the French Toast sticks for breakfast. I discovered by accident one morning that you HAVE to order the syrup with the sticks. What?? Who would order French Toast sticks and not want syrup? Regardless, we've had to be pretty vigilant about his eating. Sometimes that means getting a nurse on our side (Robert is great about this.) to prevent him from calling room service.

Chase really didn't like going out of the room or going downstairs to the cafeteria the first week he was here because he was still tethered to his pole. The dreaded, detestable pole!! But when the chemo was over? He was like a new kid! He's gotten to where he's wandering off on his own to the play room (which is right across from his room this time) and meeting some of the other patients on the Aflac floor. He's been spending a lot of time in there, which I think is great for him to have some sense of independence.

The first month we were here, he was still recovering from the surgery for his CVL (central line) and also suffering from the effects of the leukemia, both of which lasted a while, and he didn't feel much like leaving his room. Now that the effects of the leukemia aren't bothering him as well as his CVL, he's got a lot more energy and desire to get out of the room. Actually, he's also complained about being bored a bit, too. I'm glad that he's gotten bored!! I see it as motivation for him to spend more time out of the room - the very SMALL room. Yes, we are still in the small room and looks like we'll be here for the rest of this round.

Okay, but on to the more interesting aspects in Chase's life - the cute nurses!! As you might recall in the last update, I mentioned that I had let it slip about Chase liking the physical therapist. Come to find out her name is Hartley. Well, during the nurses' rounds (where they sit at a table and discuss the patients), his doctor mentioned that Chase liked Hartley. Robert was there and spoke with Chase about it. Chase thought that Robert had told Hartley that he liked her. So, the entire rest of the day when he saw Robert, he was pointing at him and drawing his finger across this throat. Robert would turn to Rebecca and make her look at Chase, who would simply smile and wave innocently. Chase didn’t realize that was why he was getting her to look over there. He was hoping to catch Chase in the act, but had no luck, so Chase was being devious without even realizing it.

I was at work when all of this was going on, but by the time I arrived, Robert was joking around with Chase about being threatened and needing protection. Robert finally managed to get Chase to realize that he had NOT spoken to Hartley, which led the two of them to discuss which other nurses Chase thought was also cute. He didn't mention Rebecca until after Robert had left though. I kind of figured that he thought she was pretty. He threatened me if I breathed a word though!

And who showed up the next day?? Hartley to ask Chase if he wanted to go down to the gym. I don't believe I have ever seen him leave his room quite so quickly.

And speaking of the cute nurses? Chase had requested some Axe body spray so he could "smell good for the ladies". I brought him a bottle of it and I should have brought myself a gas mask, too. Good grief! If you have never smelled any of the Axe products, go get yourself a whiff. They're quite strong and Chase has the whole suite of products - body wash, deodorant, and body spray, the last of which I've seen him apply several time a day. I can tell just how "cute" he thinks a nurse is by how much he'll talk to her.

Okay, now onto the medical news.....

We (FINALLY) got Chase's bone marrow aspiration molecular results back and the Philadelphia chromosome is almost completely gone!! It's basically insignificant. It can come back, but given how well it responded to the chemotherapy, everything looks very good that it won't. They've sent off Chase's records to doctors all over the US and they all agree that they should treat Chase's leukemia as AML (not CML). Unless something drastic changes, there will NOT be a need for a bone marrow transplant!!! This is wonderful news!! Should he ever need one, we do have William, which is a blessing.

Now what does all of this mean? It means that Chase will only undergo the 5 rounds of chemotherapy. He has already completed two (but not the waiting period yet of the 2nd), and then he'll have three more after this. Dr.Woods, Pediatric Hematology/Oncology Director, was making rounds this past weekend. We had yet to meet him, but he was very well acquainted with Chase's case and said it was very nice to finally meet him in person. He said Chase looked really good - always nice to hear from a doctor! He did caution us that the 2nd round of chemo is the easiest because he isn't battling the effects of the leukemia or recovering from surgery, and his bone marrow will take longer to recover after future treatments.

As for this round of chemo, we're estimating that he may be able to come home in a little less than 2 weeks if he follows the same pattern as last time, but it's all a matter of what his counts say. Until then, he'll keep himself quite occupied with the cute nurses, Hartley, oh, and Kristina in Child Life - she's cute, too. She's actually learning how to play chess so she can compete against him.

We've been extremely blessed with his prognosis and how he has responded to treatment. We thank you very much for your continued prayers!!

God Bless,
The O'Bannon Family

Friday, May 1, 2009

4/30/09 Smooth Sailing Thus Far

Posted Apr 30, 2009 11:55pm

Chase was re-admitted to the hospital this past Tuesday. We had to go to the clinic first at Egleston so they could draw his labs and we thought they were also going to do an electrocardiogram to check his heart. We arrived at 10:30 and they brought us back to a room around 11:00. They drew his labs, took some vitals,and weighed him (98.9 lbs).

Then we waited and waited and waited.

Now, I knew that we would have to wait to get a bed on the Aflac floor. If I haven't explained it before, the kids are constantly coming and going for treatment much like Chase. Also, if kids develop fevers or their counts are suddenly dropping, then they are re-admitted. Unfortunately for us, on Tuesday they weren't discharging patients very quickly and Chase was third in line for a bed. Given this news, I had a feeling we wouldn't land back in the "good" wing that has the bigger rooms with HEPA filtration.

Not only did we end up with a smaller room, but they didn't have a room ready for him until 4:15 that afternoon!!! We had to wait in a clinic room - I in an uncomfortable chair and Chase on a hard exam table - for the entire time! We did go downstairs and grabbed lunch in the cafeteria, but they didn't want us going far because they started him on fluids to prepare him for his first chemo treatment.

I was surprised that they started his chemo before we got to the room, but I'm glad they did. The sooner they start the chemo, the sooner it will be over and then we can begin the waiting process (once again) for his counts to rebound.

If you'll recall, Chase entered into the hospital on March 25th and wasn't allowed to go home until the 25th day. We were told that this go around, his counts could take longer to rebound than before. This could mean that Chase may or may not be able to come home the next time or if he is allowed to come home then it could be a far shorter stay.

I did speak with Dr.Cooper the day Chase was admitted. They didn't have the molecular level results of his bone marrow sample back yet, but he was able to tell me that there were NO leukemia cells present!! Although that technically means that he's in remission, the leukemia will come back without further chemo treatments, but the fact that he did go into remission after the first round is very positive. He went on to say that Chase's counts had rebounded very quickly.

This is my observation, but he sounded almost surprised. He seemed very confident that Chase would respond to the chemo this second time as he did the first time, meaning that he might not suffer many side effects. So far, he's done very well. Today was the first day that he complained of any nausea, but described it as only being queasy.

Right now the doctors are waiting on the molecular results to come back. They put a rush order on it, so we should hopefully hear something within the next couple of days. Dr.Cooper said that they are consulting with doctors all over the world on Chase's case. Should the Philadelphia chromosome be gone, then they'll continue on with the current round plus three additional rounds of chemo. Whether or not he'll need a bone marrow transplant after that would remain the be seen. If the Philadelphia is there, then it would mean two rounds of chemo, most likely adding Gleevac to treat the Philadelphia, and a bone marrow transplant. Dr.Cooper said that William being a match is like having an ace in your back pocket. You don't want to play that ace unless it is absolutely necessary because even with a relative who is a match, a bone marrow transplant carries with it its own set of toxicities.

Last night was my first night back at the hospital spending the night. I saw Rebecca briefly. Chase wasn't able to squirt her because he doesn't have any syringes. We'll have to get him re-armed. This morning, Robert was his nurse, and as odd as it may sound, it was like seeing old friends having both of them there.

The nurse he had last night was Natalie, and she was a cutie. She made the comment that most teen guys won't talk much. Chase, surprised that they would almost ignore the nurses, asked why would they do that, to which she replied, "Attitude." After she left, I told him I knew why he wasn't like that. I said that he liked to talk to her because he thought she was cute. A slow grin spread on his face and he slightly nodded. Yep, I thought so. LOL!

When the doctors came in this morning, they were speaking of getting him on a schedule so he would get out of bed regularly. They mentioned ordering PT for him (physical therapy), and I told Dr.Alexander that he liked the PT girls. She asked which one, and I told her "the blond". Chase turned beet red and swore to aggravate me even more than what he was already doing for letting that little secret slip. Let me say that he's quite good at that. For a kid with leukemia undergoing chemotherapy, you'd be hard pressed to believe it given his antics.

As soon as we learn more about this bone marrow results, I'll be sure to provide an update. I have to say that we've been so very blessed with how his treatment has been going and how he has been responding. Prayers work and we thank you for keeping Chase in yours.

God Bless!!

The O'Bannon Family

Saturday, April 25, 2009

Wonderful News!!! 4-25-09

Posted Apr 25, 2009 11:08am

Yes, yes, I know I should have posted this two days ago, but it's been pretty busy around here. So what is this good news?

Well, Thursday morning Chase had his appointment at the Aflac Outpatient Clinic for his bone marrow aspiration. What is an aspiration? It's where they take an actual sample of the bone's marrow. We knew this was the procedure that they would be doing since they're trying to determine if he has two leukemias (AML AND CML) or if the AML is actually driving the CML. Remember we're hoping that the Philadelphia chromosome will be gone. What we didn't expect was the news that they were also going to do a spinal tap and a chemo treatment to his spinal fluid. Granted, his last sampling of spinal fluid was clear of leukemia cells, but it is possible for leukemia cells to enter into the spinal fluid if they do not continue to administer preventative treatments.

Before they started the procedure, Dr.Keller, one of Chase's oncologists came in to speak with us for a moment. He reiterated that Chase's counts had come back up very rapidly, and that he had been surprised just how quickly they had rebounded. We were given his counts for Thursday within 10 minutes of them drawing his labs, and it was amazing to see Chase's blood counts within "normal ranges". Yes, we know that he'll start chemo again next week, which will wipe these counts out once again, but it is still very promising to see his counts at such positive levels. That means he is trying to go into remission, but without further chemo treatment the Leukemia will come back.

The best news that he could give us though was that William is a match for Chase!!!!! I can't begin to tell you what a weight that was lifted off of us! What an incredible miracle and blessing. I know that we've had thousands of people praying for this to happen, and I thank each and every one of you who did! William only had a 25% chance of matching Chase, but he did. What this means is that once they determine IF Chase actually NEEDS a bone marrow transplant, that William will be able to offer his brother his bone marrow. The process is not surgical in nature. Instead, it is much like giving blood.

We were also given MORE good news, which is that Chase doesn't have to go back into the hospital until Tuesday morning!! We were hoping that he could stay home long enough to go to his Boy Scout Court of Honor Monday night,and he will be able to do that! This will be the first Boy Scout function that he has attended in over a month!

Back to Chase's procedure on Thursday...

The same doctor who administered the anesthesia to him in the PICU when he got his femoral artery line (in his leg) came in to administer the anesthesia for this procedure as well. Chase recognized him, too which surprised me since that was so many weeks ago. Chase was given a milky substance in his IV line that quickly knocked him out. It's a short-term anesthesia that quickly wears off. I was worried that he would be really groggy afterward, but he was up and walking around within 30 minutes.

Before we left the hospital, Chase got a craving for a strawberry-banana smoothie. I have been telling him for the longest time that there is this little stand in the hospital that makes the best smoothies, teas, and coffees. So, when we was released, we went downstairs and got him his smoothie. While the woman was working on it, Chase felt a little tickle on his ear and turned to see Rebecca!! It took him a second to realize that it was her because he never sees her face-to-face up close. Typically, he is in bed, so she looks much taller to him. In fact, they were the same height which surprised us both. He lit up when he saw her and didn't hesitate to tell her that he was going to "get" her when he got back. I thought it was very nice of her to stop and say hello to him and ask him how he was doing. Given that she was on her way out (to lunch I assume) she could have easily kept walking. To me, it's just a sign of the exceptional people this hospital has and a hallmark of the culture of the hospital, as well.

Jumping back to his procedure, it turns out that the anesthesia and any aftereffects of that shouldn't have been our concern. Instead the actual chemo treatment to his spinal fluid was the "kicker". Chase's personality was temporarily altered and it was as if NOTHING pleased him. If he could complain about anything or make a comment about it - he did! Oh boy! Needless to say the ride home was very interesting. He complained about the air in the car, the traffic, the fact that we went through the drive-thru for food, etc. It became a bit comical to see if he would actually make some kind of negative comment about anything we might say. I warned William about him and in typical brother fashion, he went straight to Chase and started to bother him, just to see if he could get a reaction out of him, too.

Other than the procedure this week, everything has been calm. Chase and William are really enjoying their time together. Chase realized last night that he's going back into the hospital in a few days. I'm hoping that might prompt him to ask to leave the house more. He's been a big homebody this week other than going out a few times, but I can understand him wanting to stay in the house since he's been away from it (and his things) for so long.

Once again, I'd like to thank everyone who has been keeping up with Chase's story and praying for him. We're so very thankful for all of the support. We're hoping that we'll get the results of this bone marrow aspiration back in 7 to 14 days. This should tell us more about his Leukemia and allow the doctors to nail down a specific treatment path for Chase, which we are all anxious to hear.

Thank you so much and God Bless!

Caroline

Tuesday, April 21, 2009

Home Sweet Home!

Posted Apr 21, 2009 3:01pm

Chase has been enjoying his time at home VERY much!! He hates that he can't hug and kiss on Maya (his Doberman/Beagle) the way he's used to, but he's thrilled to be back with her regardless. Oh, and she's happy, too! The first night he was home, Chase slept in William's room on an inflatable mattress and Maya stayed outside their room for a bit crying because they closed the door. She loves those blow up mattresses because she feels that she has the right to jump up on them, and didn't like it that she couldn't join them. We have to watch her though because she likes to "paw" for attention, something we can't let her do to Chase.

Monday, tearing Chase away from XBox Live almost required a crowbar!! He really missed speaking with all of his online friends. I'm hoping he'll change his mind about taking his Xbox back to the hospital next week.

Chase is eating really well! I found that after he had gained some weight back, that he lost it again! He was down to 98lbs. Thankfully, he's been eating really well since being at home. We're hoping to fatten the boy up before he goes back into the hospital. One of his favorite foods is Bar-B-Q, so we ate at Uncle Betty's last night. He almost finished his entire plate of food. At this point, we really don't care what he eats as long as he eats and as long as it's fattening and somewhat nutritional.

Chase had a visit with a traveling nurse this morning. I had to "flush" his line - one of them. She did the other. I had to wake Chase up when she got here around 10:30. He told me that he and William made a "mistake" and stayed up talking until 2am!! Yeah, I guess you could say they missed each other. I wanted to throttle them both for staying up talking when they need to sleep, but I'm glad they're reconnecting.

Chase has to go back to the hospital Thursday morning for a bone marrow aspiration (sampling of marrow). He'll be heavily sedated for the procedure. I imagine he'll be sore as well afterward, but I hope it won't restrict him from doing whatever he may want to do. Right now, we don't know which day he has to go back in for his second stay (and round of chemo). We're keeping our fingers crossed that he can stay here through Monday night so he can attend his Boy Scout Court of Honor, but that will be up to the doctors.

So for now, we're enjoying his time at home. Other than ducking into Best Buy (with a mask) last night to peruse the video games, he hasn't asked to go anywhere in particular. I would think that he would have cabin fever, but he's just happy to be in his room and playing his games. The simple pleasures!!

Thank you for your continued prayers and positive thoughts!! I probably won't post again until later this week just because it's Spring Break, but if anything arises, I'll be sure to update.

Thank you all and God Bless!!

The O'Bannon Family

Sunday, April 19, 2009

Coming Home!!

Posted Apr 19, 2009 3:10pm

Chase is coming home TODAY!! William and I are on the way to the hospital to get him and bring his things home. He'll only be home a week though. We're praying he won't have any fevers or anything else that will cause him to need to go back into the hospital. He will have to go back for an outpatient procedure to have his bone marrow aspiration probably Tuesday or Wednesday, but he should be able to be home through next Monday we hope!!

God Bless!!

The O'Bannon Clan!

Saturday, April 18, 2009

4-18-09 Day of Visitors and Great (Possible) News!

Posted Apr 18, 2009 3:47pm

Last night Chase and I didn't do a whole lot. We basically sat around and watched a movie while I got a bit of work done and took pictures of the Boy Scout patches that have come in. He has received SO many from all over the United States, and he is incredibly proud of them, too. I'm still processing them and uploading the pictures to Flickr for everyone to see.

Weight Loss:

As you may remember, Chase's weight loss has been a big concern of ours. When he was admitted into the hospital on March 25, 2009, he weighed 103 lbs. In less than 2 weeks, he had dropped six pounds, eventually losing 7 lbs total. Well, when he was weighed recently, he was up to 101.9 lbs!!! Woo-hoo!!

I'm sure having Easter candy and donuts around here doesn't hurt either. That and Chase has developed a massive craving for milk. The hospital keeps pints of milk in the fridge here for everyone to use and he has been going through about 6 a day (two at a time). Given that he's acquired a taste for whole milk instead of the non-fat that we use at home, he's chugging down some fat and calories as he drinks.

Visitors:

Today, Chase has had quite a few visitors. Mr. Jason, Mr.John (two of his Scout leaders) and their teenage sons Ryan and JD stopped by. They all went through Chase's patch collection and Mr.Jason, who was in Cub Scouts as a boy, was admiring some of the vintage Cub Scout pins and other items that Chase recently received in the mail. It was interesting to hear how things have changed so much over the years.

Well, the visit didn't take long before it began to degenerate. Before I knew it, one of them had found the nerf crossbow and then arrows were being thrown back and forth across the room. Chase got into it as well whenever an arrow would fall on his bed. He would take the opportunity to launch it right back. Let it be noted that the "adult" males in the room were also active participants. That is until they chose to take blue surgical gloves and see if they could pull them over their head and blow them up while wearing them. Yes, there are pictures. Be sure to check them out in the gallery!

Great progress!:

Anyway, while all the mayhem was going on in the hospital room, Dr.Keller stopped by with some GREAT news! Chase's counts are coming back VERY nicely, especially within the past day. He said that it looks like Chase's leukemia is trying to go into remission. Does that mean no more chemo if that is the case? No. Two rounds of chemo is the minimum. Also, much will depend on the results of his next bone marrow aspiration and if one of us is a match for him as well.

Dr. Keller cautioned me by saying that they're looking for trends in his counts, but thus far everything looks very promising. Even though he had a fever last weekend, ALL of his lab cultures came back negative for infections (Woo-hoo, again!), and because he hasn't had a recurrence of the fever, he took Chase off the antibiotic, which he called a "bold move", but entirely prompted by Chase's progress.

For the past week, we've been told that he probably wouldn't be able to come home for a short break until late next week, which would be the end of my Spring Break. However, today Dr.Keller said that although he can't promise anything, if Chase's counts continue to rebound as they are, then he could be discharged MONDAY!!!! That would be so incredible if that happens since my Spring Break begins Monday as well!! I'm not going to get my hopes up just in case, but I'm so very thankful for all of this wonderful news regarding his counts!! It's amazing!

After all of that excitement, Chase and I went to the library to return a couple of movies and to get me a bite to eat. When we returned, Debbie, one of our cousins on David's side of the family, dropped by for a visit. Chase had not seen her in a while, so it was great for him to be able to reconnect the name with the person once again. She promised to teach him Chicago Poker the next time they're together. It sounds like a crazy game. I have not a clue how to play poker myself, so I may need to sit in on that game, too.

Debbie had not been gone long before we heard ukulele music. I opened the doors and there were CLOWNS across the hall. We ran into them on the way back to the room and Chase spoke to them briefly, but we didn't think they would be back around. Actually, the conversation in the hall was funy. One of the clowns told Chase that he was an inventor and that he was working on something that would make him very rich - those things that keep the ceiling from falling to the floor - walls!

Well, back in Chase's room, the invention conversation continued. He was also inventing a new kind of car. The other clown began to take "notes" of this new car, too. This car would be made entirely of wood. Chase started asking about all kinds of the parts, just to egg him on a bit, and the clown enthusiastically explained how the body was made of wood, the engine of wood, the tires of wood. But then they discovered one thing about the car - "It wood-n't go."

Chase missed the joke completely, but the clown continued.

So, when that car "wood-n't" go, they got the idea of putting steel on the car. "But it 'steel' 'wood-n't' go."

Again, Chase missed the joke.

He tried two more times, but those also went over his head as well. Then the 2nd clown (the one taking notes), suggested that they put snails all over the car that way when it was driven down the road, people would point to it and say, "Look at that es-car-got!" **Cue groan**

Clown #2 told him that the idea needed to go one place. With that, he tore off the paper he had been writing on and put it in the trash. Clown #1 told him that at least he still had his "wall" and "floor" invention. Chase said that he couldn't make any money off of it and that someone would steal the idea unless he patented it, which prompted him to "pat" the wall and floor. "See, now I've patented them!" He then left the room and told Clown #2 that he knew of a cake he wanted to invent, too, so he better go "patty cake" it.

It's been a full day thus far to say the least. I have to get lessons on how to change Chase's dressing over his central line, which I imagine I'll have to do at some point today and then again tomorrow. They have a mannequin to practice on though instead of Chase. Thank goodness for that!

I'll update if we get any further developments regarding when he might go home. In the meantime, thank you to each and every one of you for keeping Chase and our family in your thoughts and prayers! Prayer works and I see it in Chase every day!

God Bless!

The O'Bannon family!

Thursday, April 16, 2009

4-15-09 Not much news is GREAT news!

Posted Apr 15, 2009 11:51pm

I know it's been a couple of days between updates...okay,okay,okay - MORE than a couple, but I do want to say upfront that Chase has been doing VERY well.

Yes, Chase did have his first fever spike this past Saturday night, but by Easter Sunday it was over with, which I was very thankful for since he was expecting visitors with Easter dinner on Sunday.

We did have one minor problem that was corrected today. He has this biopatch disc over his central line where it goes into his chest. There has been a blood clot directly on the line and the stitch there once it ceased "oozing", but this past week the biopatch became attached to the clot - not good. The biopatch has to be changed weekly since it slowly releases antibiotics to prevent infection. Sadly, this was Easter Sunday and right as my (Caroline's) parents, a cousin, and William were arriving, that's when they were trying to get the old patch to dislodge. It happened to be a bit painful, too. They kept at it for about five minutes until they finally decided to hold off and just re-bandage it.

Chase really enjoyed having his brother here. I can tell how much they missed each other, which made me even more resolved to get the two of them together for a sleep over in the hospital. After Chase ate some ham and dressing, he, my Dad, and William played a few hands of 5 Card Draw Poker and then William and Chase played a round of Chess - Chase won.

On Monday, the Atlanta Zoo brought by a few animals for the kids at the hospital to view. Chase, unfortunately, couldn't touch them, but since he loves animals, I'm sure he enjoyed getting so close to them regardless.

David reported that Chase only had one additional fever lapse, but it was only 100 degrees F. Since then he hasn't had any other fevers. He has had a slight cough, but it hasn't been persistent. The only other thing that I would say Chase has been complaining about is some pain in his left leg beneath his knee. Since he's had this pain (only when he is in a certain position) for almost a week, they went ahead and did an ultrasound just to make sure there wasn't a blood clot forming. I'm pleased to report that he's okay. It may have just been a swelling of the blood vessel, which can be a temporary side effect, great news.

On to Wednesday...

William is spending the night tonight. This is something that both of them have been looking forward to. It will be the first day that they've spent more than 2 hrs together since Chase's diagnosis. As I type, the two of them have been hanging out in Chase's hospital bed playing Xbox 360, watching "Yes Man!" with a small break in between to go downstairs and get food from the cafeteria.

Oh, and the two of them have been plotting against Rebecca. Fortunately for her, they had her working on the other hall, so Chase and William won't have the chance to attack the poor woman. On our way down to the cafeteria, I looked through the doors at the end of our hallway and noticed Rebecca and Robert speaking with each other and then she was waving with a somewhat devious smile on her face. It took me a second to realize that she was waving at Chase, and when I turned around he was pointing at her with slanted eyes. Chase and William didn't bat an eye before talking about how there was "two" of them against her.

Robert and Rebecca started talking about how they would just wait for Chase to go to sleep and paint his nails purple, put some lipstick on him, and then they'd round up that blond wig they have around here, put it on him, and snap a few choice pictures to post on Chase's carepage.

Let the record show, that I will make SURE my camera batteries are FULL and my memory card EMPTY if the two of them want to arrange for a little late night mayhem against Chase, especially once he gets toward the (final) end of his hospitalization. It will have to be the end, because as Chase has already pointed out to Robert that if he tries anything on him, Chase WILL be back after his week away from the hospital and he won't forget.

Did I say already how much I LOVE the nursing staff here???

That's all for tonight. It may be another couple of days before my next update, but in the meantime, enjoy the new Blue Bunny Blackmail pictures. I took these the other day and used them to bribe Chase. However, he realized he could add some LOLCats titles to them and had a bit of fun adding his own spin to the pictures.

Thank you very much for your continued thoughts and prayers!!

The O'Bannon Family

Tuesday, April 14, 2009

For Our Brave Son

Posted Apr 14, 2009 2:01am

Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child

Unafraid because His armor is the best
But even soldiers need a quiet place to rest
People say that I'm amazing
Never face retreat
But they don't see the enemies
That lay me at His feet

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and and cry for just a while
'Cause deep inside this armor
the warrior is a child

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and look up for a smile
'Cause deep inside this armor
Deep inside this armor
Deep inside this armor
The Warrior is a Child

Performed by artist Twila Harris

Sunday, April 12, 2009

Happy Easter! - It's a longish update today.

Posted Apr 12, 2009 10:45am

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

Thursday, April 9, 2009

04-08-09 Just nosebleeds

Posted Apr 9, 2009 5:05pm

Dad (David) was on duty yesterday. He and Chase had a pretty good day together. A nosebleed was the only down part to the day thankfully. They attended a Home Depot boat building workshop together. Now that the paint is dry, he can put the sails on it, but I did have one small complaint...he had to go and paint the thing orange and blue!! Gator and Auburn colors!! I'll have to forgive that little transgression given his condition.

The clowns came for another visit as well. Chase remarked that they weren't AS funny on their second visit as they were the first time he met them, but entertaining nonetheless.

He and Dad played chess yesterday. I just asked him who won and he said that he did, and added, "Dad's not very good." Not so sure I want to play him again myself out of fear at what he might say about me!

A couple of friends from work, Scott and Julie came by the hospital to take me out to dinner. Scott's wife recommended this great little place called Wahoo. From the outside it might not look like much, but once inside it reminded me of one of those cool little family restaurants that you might stumble across in Europe. We ate out on the covered patio in view of this great garden area they have. Let me just say first of all that the food was FABULOUS, but even had it not been, the company and ambiance would have completely made up for it. However, the dinner was wonderful, which only made the entire evening all the sweeter!

My parents were here with Chase while I was out. He beat my dad twice at Chess although according to him he was only "trapped" not truly beaten. When I returned, I had a rather large pile of Scout patches that had arrived in the mail. Scott and Julie brought them from work and WOW are they cool!! He had a great time going through them, too. I'll post pictures soon.

After that, Chase got in a mood while I was on the phone and literally attacked me. I was sitting on the sofa and he crawled all over me, putting his hand on my mouth so I couldn't talk and making all kinds of noises so his Dad on the phone couldn't hear me at all. The boy is not only STILL strong, but he's got a distinct advantage because I can't get too rough with him since he's got that central line in his chest! Not a fair advantage. Anyway, he was also getting his fingers wet in my mouth and rubbing them all over my face - gross!! Then he grabbed the phone from me and we ended up playing keep away. By the end, we were both laughing so hard we were crying.

About 2 am he woke up with a pretty bad nosebleed. By the time he realized he wasn't drooling, he had soaked a rather large spot on his shirt. We all thought that perhaps he might have to get the shirt cut off of him, but we managed to get it off of him and it has been soaking in cold water ever since. I think it will be okay. It's one of his favorite shirts, so I know he would really rather not lose it.

Because he (we) went to bed late last night and his sleep was interrupted by the nose bleed, we both slept in today until around eleven. I tried to get him up, but he pretty much refused, saying he wanted more sleep. I finally got him up, but he was NOT happy with me at all. Thankfully a Sprite and a peanut butter and jelly sandwich made him feel better. After eating, we went down to the library and borrowed two movies that we've been watching today.

What is funny is that one of the movies is Anacondas, and both his head nurse and one of his doctors seemed to get a bit caught up in it. You know, it's one of those kind of cheesy "B" movies. He and William love watching them on SciFi and we don't get the SciFi channel here (gasp), which is awful!!!

Anyway, he's in great spirit, enough to still be harassing me while I'm typing this. He though it was really unfair that I could continue to type almost error free even with him covering my eyes with my hair. So much for thwarting my efforts to update his carepage!!

So, that's about it for now. His Bingo night is tonight and I think a couple of his Scoutmasters are supposed to be coming by as well. Sounds like a busy night! I'm headed home to be with William and my mom is coming, too so I can work tomorrow.

Oh, and one last note. The doctors said that typically by now, many leukemia patients have developed fevers and/or some other kind of illness. He said that he is very happy to see that Chase has not at this point succumbed to either. I realize that most likely it will happen, but the more days he is well, the better! Amen!

Thank you again for your continued prayers! I see them working!

The O'Bannon Family

Tuesday, April 7, 2009

4-7-09 Nose Bleeds, Spinal Leukemia (not), and Soccer in the halls

Posted Apr 7, 2009 5:22pm

I (Mom), went back to work this past Monday for the first time since 3/25/09! It was great to get back to work, too! However, getting back to work has kind of slowed down my updates on Chase's carepage - sorry :)

I'll give you some of the highlights. Chase over the past couple of days has had some issues with nosebleeds. He has always been prone to them, but they've never lasted long, and have never bled very much. Well, since his platelets are low, his nosebleeds are more frequent and last quite a bit longer.

While David was with him, he had two nosebleeds. His RBC (red blood cell) count was also low, which can cause him to not be very energetic. He has been rather lethargic and now wanting to do a lot of activity. He received both platelets and 2 blood transfusions. By the time I arrived yesterday evening, he was much more energetic than the previous day!!

While I was at work, David emailed a few status updates for him:

At first, they thought there were going to have to give chase more chemo in his spinal fluid. His chemo regimen doesn't affect any potential Leukemia cells in his spinal fluid, which means they have to treat that fluid directly - no fun! Well, we received WONDERFUL news!!! Chase has NO Leukemia cells present in his spinal fluid!! Praise God!!!! To say that we are blessed by this news is a HUGE understatement!! Now, does this mean his spinal fluid will always remain clear? That I can't answer for now, but we are all so very pleased for this stupendous news!!

Chase, from what I'm still hearing has TWO types of Leukemia: AML, which he was first diagnosed with, and CML. There are fewer pediatric cases of this occurring than you can count on your hand!! Good continued news is that he is still looking great and responding extremely well to treatment!

Onto today...

Another nosebleed!! This one took a while to go away, so they gave him another dose of platelets. Right afterward, his bandaged area above his central line began to itch him like crazy. His nurse, Rebecca (the one he has squirted), was told she could remove the tape. With my help and taking probably more than 30 minutes, we slowly and painstakingly removed all of that awful tape. I hope they never have to use that junk again because Chase hates it and it appears to be very painful to remove, even slowly and with these little pads that help to dissolve the adhesive.

Let me rewind a bit. I told Chase that Rebecca would be back today, and when she came in to do his vitals at dark-thirty, he grabbed his loaded syringe. From his accounting, they had a little tug-of-war over the syringe before he finally got off a shot.

Back to his update...

After getting both the tape off and changing that bandage over his central line (another 10 minutes), he was taken OFF his IV fluid!! Woo-hooo!! During the day, as long as he is drinking regularly, I don't think they're going to make him stay one it!!

He got a quick bath and by the time he was out his two physical therapists were in here to get him out of bed. They had a Nerf soccer ball with them and wanted him to kick it around. I followed down the hallway a few minutes later to see him RUNNING - yes, RUNNING and kicking the ball. He picked it up a few times and threatened to play dodge ball with it. I can't say how great it was to see him running around like that!! He was full of energy and ready to leave his room for a while.

Unfortunately, his stomach began to hurt as a result of the different constipation meds they have had him on. He came back into the room and fell asleep for over an hour. They've since removed that from his orders, much to his pleasure as he told me that he wasn't going to take any of that stuff anymore.

Once he woke up, we ordered a meal ticket for him and we went downstairs for a walk. I showed him the gift shop and tried to get him to buy these crazy looking PJ bottoms that were long since his legs have been getting cold, but he wouldn't go for them. I did get him a hooded zipper jacket though so he could wear a short-sleeved shirt and layer with the jacket if he wants.

After our purchase, we went to the cafeteria and he picked out a an IBC Black Cherry soda, a container of thinly sliced apples with caramel, and a deli sandwich. He's eaten almost all of the apples by himself, the entire IBC soda, and some of the chips that I was eating. He's saving the sandwich for later.

Yeah, I forgot. He "stole" 1/2 of my peanut butter and jelly sandwich earlier today. He told me that he didn't think he was hungry, but I would say that he scarfed his half. He also drank a smoothie and some chocolate milk.

It's wonderful to see him eating, too! He's eaten and drank more today than I would say he has in the past few days put together!

We still don't have a day pinned down when he might come home. They're watching his levels and most likely won't be able to give us a time frame until late next week. And he's talking about going ahead and shaving his head. He was going to do it today, but decided not to. Once he shaves it, I'll post a pic.

Thank you again for your continued prayers and thoughts for Chase and our family! He's doing so very well and I attribute that to the wonderful staff here at Egleston, but mostly to the prayers that I know are being sent our way.

Thank you!!!

The O'Bannon Family

Saturday, April 4, 2009

Posted Apr 4, 2009 7:19pm

Chase slept REALLY well last night and even got up to go to the bathroom without my help!! Okay, so not a big deal for most people, but considering that he has to unplug is IV "Tree", wheel it into the bathroom, do his thing, and then wheel it back out and plug it back in? That's HUGE! And he didn't even wake me up either. He said that he didn't want to disturb me. Thoughtful boy!

He was woken up about 5:45 by a nurse who was checking on his vitals. He tried to launch the nerf-ish crossbow arrow at her but missed. According to Chase, he didn't actually miss because his thumb got in the way and it never launched. After practicing with the thing last night, he managed to launch it from clear across the room and right at the door - nurses beware!

The same nurse he "missed" gave him the idea of using a syringe to squirt water after she told him about a little girl doing the same thing to her. Don't worry, the syringes are plastic, blunt-tipped - no needles. Well, thanks to my Dad who visited today, he gave Chase one and now he's going to save it for the unlucky nurse who wakes him up at 5:45 for vitals. This mom just hopes she doesn't get caught in the cross-fire!

Oh, and last night, I slept in the hospital bed. Chase refused to give up the sofa, which is supposed to be MY bed. He was back in his own bed today though after his central chest line was oozing blood again. I know he's sick and tired of getting that painful dressing changed. It's a sterile dressing, is completely air tight and waterproof. Given that, it HURTS to have it pulled off.

They eventually changed it this afternoon and found a rather large blood clot that developed ON the line where it meets his body. They called in a surgeon to look at it, but they couldn't leave it open until she got here. So, they put gauze and light tape on it and then - get this - placed a 10 lb SANDBAG on his line to try and put enough pressure to stop the bleeding. No joke. I should have gotten a picture of it, but completely forgot.

Between the bruising that was already there and the sand bag, he was extremely tender when they pulled that dressing off to put on a more permanent one. Also, the surgeon put on pressure tape, which is a thicker tape to ensure more pressure on the wound to stem / stop the bleeding. She had to put down a lot of pressure on his chest to make sure the tape was tight and Chase left moon marks on my hand where he was squeezing it (with nails).

Oh, I did get a couple of pictures of his central line bandaging and have posted them. There is NO blood, but Chase looks pretty wiped out in the pics. I told him that a few years down the road, he'll be able to look back on them and barely recall that day. :)

Earlier in the day (sorry for hopping around), he got a bath!! Woo-hoo. Truthfully, even though I've given him a few sponge baths, the boy was smelling a bit ripe. He did NOT want a bath, but once he was in there really didn't want to get out. I don't blame him either. It was warm and I was tempted to climb in after he got out.

He received another dose of platelets today, too since his count is low. That didn't take too long and after that he was visited by two Big Apple Circus Care Unit clowns - Dr.Mimi and Dr.Notatall. I was on the bed with him when they asked if they could come in and had I known what a complete riot they were going to be, I would have grabbed my camera and filmed it!! When they learned of Chase's name, they took it literally and chased each other around his hospital room!! Then they both froze at the foot of his bed and the male counterpart (Dr.Notatall) looked at him and asked, "What's your name again?" Of course, that resulted in another chase around the room until the female counterpart reached the wagon that is in the room and he, poutingly, declared her "safe". The two of them then proceeded to bicker between each other and Chase keep egging it on until both of us were laughing so hard we were in tears. Most of it was about her rolling her eyes about the other doctor and then attempting to "shush" Chase every time he tattled on her that she was rolling her eyes. She even said about Chase, "I don't know what's wrong with him and why he's saying it! He's probably delusional or hallucinating or something." I just hope I'm here the next time they come by. Chase and I both were in awe of their improvisational skills and it was great to see him laughing like that.

Around lunch time my parents dropped by for an extended visit. Before they arrived, Chase was weighed and he has lost 3 lbs total. I have been begging him to eat, but he just doesn't feel like it. He's hardly been drinking either, but he is on an IV bag 24/7. Since my parents were here, I asked Chase what he wanted if anything, and he requested the Dannnon strawberry-banana smoothies. The cafeteria was out of them, so my mom and I (while the Chess battle was going on between him and my Dad) drove to Publix a few blocks away and stocked up. As I type this, he has already drank 3 of them - yeah! Not loaded in calories, but I did buy the kind with extra vitamins and antioxidants.

Today was a gorgeous day and the hospital has a very nice garden area with benches. I was going to get Chase out there, but given the issues he's had with his central line, we had to abandon that idea. I think we're supposed to get rain perhaps tomorrow. If not, I'll see if I can get him out there.

So, for now, it's 7:11pm and he just fell asleep. I've been trying to get him up by 10:00am so he'll go to bed earlier than 1 am!! I'm going to let him nap for a while, especially after the bandaging he endured. Maybe later we'll watch a movie.

As for William, since I'm not going home tonight (at Chase's request) he and Dad had a great day together from what I've heard. Tonight, they're having a boy's night out by having dinner with a friend and then back for a movie night of their own and perhaps some Xbox 360 battles. David's friend plays Xbox Live with both Chase and William and from what I've heard, he's got a pretty sweet set up for gaming with a screen and an LCD projector.

I hope everyone is able to take advantage of the beautiful Spring weather (should you have beautiful Spring weather where you are) and enjoy this weekend!

God Bless!

The O'Bannon Family.

4-4-09 : New Pics!

Posted Apr 4, 2009 12:20am

For those of you who aren't on Facebook or Plurk, I've posted a few new pictures of Chase taken tonight when he received a wagon FULL of goodies from my co-workers at the Barrow BOE.

Chase says, "Thank you very, very, very much!!!" As you'll see in the pics, he was quite surprised.

Thanks from the bottom of our hearts to all who contributed!!

God Bless,
The O'Bannon Family

Friday, April 3, 2009

Finally in our AFLAC room!

Posted Mar 31, 2009 12:33am

I'm pleased to report that we are officially OUT of the PICU!! The room we're in now is considerably smaller (we'll call it cozier) than the PICU room. Chase said he liked the larger one, which I thought was kind of odd considering he never left the bed, but hey, I think his bed was bigger up there, too.

We're all settled in now, and should be in this room for the remainder of his treatment for this month. If you're interested in sending Chase anything, please email me directly (cobannon (at) barrow.k12.ga.us) or send me a message via Facebook or Plurk and I'll give you the address. I hesitate to send things to the hospital directly :)

As for visitors, we can now be more liberal with having people come see him. What we do ask is that you give us a call (email) a day ahead to give us a head's up. Some nights might be good for him while others not so good, so we'd like to make sure he's up to enjoy company when you can come.

Tonight, Chase received 2 chemo drugs:
Chemo med #1 (Cytarabine) is an IV injection every 12 hrs for 10
days.

Chemo med #2 (Etoposide) is once a day for 5 days and given over 4
hrs.

We're on day #4 of his Chemo treatment. At this point, I do not have what is called a "road map" for his treatment regimen for the month. I'm hoping to have that tomorrow.

Today was a great day for him! He (and I) rested until noonish and then he managed to finish the last two Lord of the Rings movies today. He's been a bit queasy tonight, but he also just received some additional meds to help relax him and combat that. I'm hoping he'll be knocked out by the time I finish writing this.

I know there's more that I probably wanted to say tonight, but my brain is about spent. I'm still gathering information about donating platelets and will post that soon.

Again, thank you so very much for your continued well wishes, thoughts, and prayers. We are feeling them!!

God Bless!!

Caroline, David, Chase, and William

Oh...Maya and Baxter, too.

Posted Apr 3, 2009 1:11pm

Chase had a good night's rest April Fool's night and slept in until noon on the 2nd. He would have slept MUCH later had I allowed him. Given that I had to force him to go to sleep at 1 am the previous night, I didn't want him sleeping any later.

Chase's energy level was wonderful yesterday. On the 1st, he had received both a blood and platelets infusion, which really helped his energy level tremendously. When I walked with him, he didn't wobble or seem to be weak in the knees whatsoever! In fact, he took a hold of his IV pole and headed off down the hallway. Actually, Chase got a bit perturbed with me because I didn't have a destination in mind before we set out. I'll know better next time though.

We weren't back in the room for long when his two physical therapists came by to work him over a bit. When he got back, they had him sit on the sofa with me because they wanted him to sit up a bit more than he had been. He wasn't sitting with me long before he stretched out his legs and started to try and push me off the sofa!! Yes, he's back to harassing me. Why? Because he wanted me to turn the TV on, but I would have nothing of it. He read a book of his for a while instead.

Dr.Cooper, one of Chase's oncologists dropped by to visit to tell us that they had received some of the genetic results from his bone marrow sample. It turns out that Chase has a Philadelphia chromosome, which is mostly found in adult versions of leukemia, specifically CML (chronic myeloid leukemia). Also present was Inversion 16, which is generally associated with AML - the type of leukemia Chase has been diagnosed with.

Just to refresh everyone, AML is typically an adult leukemia. Typically, only 10% of pediatric leukemia cases are AML. Even MORE rare in children apparently is the CML type of leukemia, which accounts for 3% of childhood leukemia cases (less than 100 per year nationally). However, given that Chase has BOTH Philadelphia chromosome and Inversion 16 makes his case possibly even more rare. Dr.Cooper referred to his situation as like one of those "case studies" you read about where there are only 3 or 4 annually.

What does all this mean?

First of all, because the Philadelphia chromosome and CML are found in adults, Chase's doctors are going to consult with the adult leukemia doctors at Emory University. There is an existing "wonder drug" called Gleevec, which specifically targets the Philadelphia chromosome. At this time because Chase is responding so wonderfully to the treatment plan they have him on, they aren't going to change a thing. However, they may also include this new oral medication Gleevec to treat the Philadelphia chromosome. At this point, we don't know yet. They are also going to see if we have any records of blood results for Chase from years past so they can check his white blood cell count. Apparently, CML patients can have leukemia for years before it can all of a sudden produce "blasts", which them produce sudden symptoms like what Chase was exhibiting.

I apologize for being unable to more clearly state what is going on, but it appears we are now and a whole new learning curve.

On a fun note, Egleston has a weekly Bingo night that we attended. Chase actually went all the way downstairs and walked to a classroom behind the cafeteria where he played three rounds of Bingo. The prizes are really great for the kids and EVERYONE wins during each round, meaning they keep playing until you win. I'm not sure where the prizes come from, but Chase ended up with a small Lego set and a set of Hot Wheels cars. He did win a third time, but nothing on the table to choose from interested him, not even the DVD The Princess Diaries 2.

From what we were told by one of his nurses, as the holidays grow closer, the prizes get bigger and better and if you're too sick to attend, they have it live via closed circuit and you can still play from your hospital room - cool! He seemed to really enjoy himself and I've got to hand it to Egleston for arranging the activities for the kids.

I was at home with William last night, but I'll update on Chase for today as soon as I am debriefed by Dad.

God Bless!!
The O'Bannon Family

Thursday, April 2, 2009

4-01-09: No April's Fool Here!

Posted Apr 1, 2009 10:16pm

Chase had a day of ups and downs today, but it MOST definitely was on a very positive upswing by the time I arrived at the hospital tonight (around 8:30 pm).

Dad (David) had duty last night, which according to him was fairly peaceful. Chase had a small nosebleed during the night. He's always been prone to them, so it wasn't anything alarming. He slept through the night without any other issues thankfully.

This morning, after receiving his Cytarabine, an IV injection every 12 hrs, Chase became ill. I hated to hear that he had been sick, but on a positive note, this is only the fourth time he's gotten sick in his six days of chemo. I'm no expert (are any of us?), but that's seems to be pretty good stats if you ask me. Anyway, he was given some extra nausea medication and slept some more until early this afternoon. He also had another blood transfusions today. Once done and recovered, that's when the "fun" time began.

Chase started his physical therapy!! Woo-hoo!! With the help of two physical therapists, Chase walked down the hall and down to the game room where he played Pac Man, Galaga, and Donkey Kong on those big arcade type units (Saint, you may have to come check out their collection). As Chase put it, he played those "really old" games. Old?? Heck, I remember when Pac Man came out for the Atari home system - but I digress. He had a great time and Dad took some pictures of his first walk and game play, which I'll post once we get them off his phone.

Chase also walked around the nurse's station and took a ride in a wheelchair, too - "Dad-powered". Oh, and I forgot to mention that David battled Chase in chess last night and LOST. My own defeat can't be far around the corner.

Let's see what else went on....OH! He moved! Chase's new casa is much bigger than before, which is great. We were pretty much bumping into everything as we moved around. Considering we're going to be here for several more weeks, this new room is a HUGE improvement. So, if you had the room number before or the phone, both have changed. We're still on the same floor, but down what used to be the old bone marrow transplant wing (operating rooms I think that have been renovated into patient rooms). They try to reserve these for AML patients and they have a special HEPA air filtration system, too. When Chase leaves this hall, he's supposed to wear a mask now.

Anything else? Well, I came into the room tonight with my Chic-fil-A dinner that I had yet to eat. He took my sandwich out of the bag and at a 1/4 of it - the turkey! Good thing I had already eaten the fries on the way here and wasn't starving. Just kidding. :) I was thrilled to have him try and scarf my food. He has also "oohed" at a few food and restaurant commercials. Encouraging stuff indeed!! He ate a bit of cafeteria oatmeal tonight before I got here and it absolutely received the thumbs DOWN. Sorry CHOA Cafeteria, but you've got nothin' on Nonna's Irish oatmeal.

Oh, and he received some books from teachers at the Barrow PLC!! What a great gift and much appreciated. I may have to read a couple of those myself.

Chase says, "Thank you for all of the books! They look really good."

He's used to having some SSR (Sustained Silent Reading) time at home, something we're going to pick back up here now that he's feeling more like himself.

One last thing for tonight, CHOA has a program called "Beads of Courage: Bead Journey - Every bead tells a story...track your cancer or blood condition treatment." This is really cool!! Chase received a strand last night with beads on it that spell his name. Then I was given a little booklet with all kinds of procedures listed in it and a corresponding bead for each one. So, now I have to try and go back and recall (thanks to carepages, I hope that will be easier) all of the things he's had done to him and/or gone through because he gets a bead for EACH occurrence. Once we get it started, we'll get a picture put up. I think it's a wonderfully symbolic way to track his journey and to see at the end just how much he faced and conquered.

That's all for tonight! I'm being summoned to a chess game. I hope everyone takes care and has a great evening (or day depending on when you read this update). Thank you for your continued prayers and support!

God Bless!
The O'Bannon Family

Wednesday, April 1, 2009

3-31-09: Today's Update

Posted Mar 31, 2009 11:59pm

Okay, quite a bit went on today. First of all, I just got finished going through many of the messages that everyone has left with him and he was FLOORED!! The update prior to this one is from him (dictated). He was amazed and very thankful for the support.

On to today....

Chase got his braces off! No, it wasn't time, unfortunately, but they're off because the Leukemia had caused his gums to become horribly swollen. They felt it would be easier to take care of his teeth and gums without them. He wasn't gone long and although his teeth are a bit sore and slimy, the process wasn't painful for him.

We met Dr.Cooper today, one of his two primary Leukemia doctors. He thought Chase looked VERY good. I thought he looked great, too, especially since he woke up smiling and laughing, but to have his doctor say that was definitely great news.

He also gave us a "road map" for Chase's chemotherapy treatments. Today is Day 5 of his chemo and is the last day that he'll receive all 3 drugs. For the next five days, the only chemo drug he'll receive is the IV push (a small amount of chemo) twice daily! Once that is done, it will be waiting time to see how quickly his body can recover and generate good white blood cells. With luck, he'll get to go home for two weeks in mid to late April!

After that, Chase will go in for four more rounds of chemo (minimum), each lasting fewer days, with the fewest number being five. However, we were warned that as each month passes, his body will take longer to regenerate white blood cells, which means he may not get those little breaks.

My part of Chase's day ended with a string of visitors including his Nonna (my mom), her pastor, and a room full of Scout leaders. The last of whom gave him some much needed harassment since his brother hasn't been able to deliver it himself. It was definitely a great way to end his day as his last big round of chemo began.

Tonight I (Mom) am at home to spend some "mom" time with William and the pups, and Chase is with Dad (David). Oh, and my chess game with Chase was interrupted, but we'll pick up where we left off. For those of you who were rooting for him to beat me, I'm thinking that's a foregone conclusion, but I'll report the game once it's done. :)

Thank you and God Bless!!

Caroline, David, Chase, and William
Maya and Baxter, too.

Tuesday, March 31, 2009

Message from Chase

Posted Mar 31, 2009 7:00pm

I want to thank everyone for all of your nice messages and prayers. Everything is going fine. Things are not too painful. The thing that I hate the most is that I'm stuck in bed right now. I got my braces taken off today, and my teeth feel a little sore and slimy. I wish they weren't off. I hope I can get out of here soon, because I'd like to be back online with my Xbox 360.

I think all of the doctors and nurses are nice. The food is good and I get to order room service from about 50 items. I'm just starting to get back on solid foods.

Thank you again for your love and care!

Chase O'Bannon

Monday, March 30, 2009

3-30-09: Last Night

Posted Mar 30, 2009 8:38am

Chase had a calm night last night!!! Woot!! I'm so pleased. Yes, we were both up about every 2 1/2 hours for one thing or another (calls of nature, blasted alarms) and we both had a bit of trouble getting to sleep, but it was uneventful! His fever went up a bit and there were a couple of queasy moments for him, but nothing alarming. I was really concerned because last night he was on the original 3 chemo meds from that first night when he was so sick.

He's sleeping right now (8:33 am) and I'm going to grab breakfast and then try to sleep a bit more myself.

Thank you for your continued prayers!!

God Bless!
Caroline

2nd Night on Chemo and Today's Update

Posted Mar 29, 2009 10:30pm

David took night duty last night so I could go to my mom's house and get some sleep and spend time with William (and the pups - Baxter and Maya). It was nice to know that all I had to do was relax and let someone else baby me!! It was also really great to spend some cuddle time with William. I missed him!!

I got reports from David that Chase did exceptionally well last night. He did have a fever of 101, but did not get sick (yeah!!). He did have to get his dressings on his two catheters changed, which he HATES and asks to be knocked out for. They managed to give him some meds that did just that so they changed it while he was out. He also got a sponge bath and his sheets changed as well.

Chase was given MORE platelets, frozen plasma, and a blood transfusion. The clotting (or lack of) has been a concern of theirs, but as of around 4pm this afternoon, he was doing much better in that area so they were able to remove the catheter at his groin!! I know that had to be a huge relief for him because that means two less tubes that are sticking out of him. Now he's down to the chest catheter (two leads) and the original IV in his right arm, which I hope they'll remove soon. No word on that yet.

Before I left my mom's house, I had a bit of a scare with William. He didn't sleep all that well last night because Maya was on the sofa with him and he couldn't stretch his legs out. He came into my room and we pulled out the other mattress for him to sleep on and he slept in with me until 1:00 as well and then laid back down for a short nap after "breakfast". Later, he was on the sofa with a blanket wrapped around him. Those who know William, knows how hot-natured he is. He goes around in boxers and no t-shirt for bed in winter!! I felt his head and he was hot :( Turns out he had a fever of 101.4!! William had also been slightly coughing and had a stuffy nose. Mine was stuffy as well, but when it rains, my sinuses always give me fits.

Fearing that I could be getting something to endanger Chase, I immediately called David and asked him to ask the nurses if it was okay for me to be around Chase. They said yes, as long as I kept on a face mask when I was close by and made sure I washed my hands. So, naturally I can abide by that and have been here since around 5:30.

He finally was able to finish watching Tremors 3 and we started the 2nd LOTR movie, but he was getting sleepy from the nausea meds (a routine precaution). They started his chemo around 8:15 and so far no fever and no sick stomach. We still have quite a ways to go tonight, but so far so good.

We should be in a permanent room tomorrow (keeping fingers on both hands crossed for that). Staying in the PICU has been wonderful, but it will be nice when we can be in a room with some more "relaxed" standards for visitation and food.

I will post when he's got a room number and phone number for the room. I know many of you have offered to help however you can, but up until now our situation hasn't been what I would call stable. Not to mention I haven't really known what to ask for or what I might need. Perhaps after we are more settled, I'll know more.

I would like everyone to consider donating blood platelets, something that all Leukemia patients need. It's a different procedure from actually donating blood. Here is a Red Cross website about it: http://www.givebloodredcross.org/platelets/what-are-platelets/

I think you may be able to donate either "to" Chase or in his name. Platelets, unlike blood donations, can't be stored for long periods of time. They have a shelf life of a week or less. I'm still learning about them. Leslie Roquemore-Goodwin is helping me out by doing some research on it as she had donated for others in the past. I will post more information later that she finds and that what Egleston can provide as well.

Thank you again so very much for your prayers and offers of help!!

God Bless!

Caroline

Sunday, March 29, 2009

March 28, 2009: Chase's First Night on Chemo

Posted Mar 28, 2009 10:31pm

I'm going to just start this off with a warning that last night wasn't pretty before I go into what happened. Rest assured there is also favorable news, but it was an extremely difficult night.

They started chemo after 9pm and I don't think I finally crawled into bed until closer to 1 am. I don't even recall falling asleep before Chase called me and told me that he thought he was going to throw up. I barely grabbed the bowl in time before he was sick. He managed to drink two small boxes of apple juice earlier, but he was also given oral meds before he went to sleep to counter the expected increase in uric acid in his blood.

Here's a quick definition of uric acid and what it does it left untreated:
"Uric acid is a chemical created when the body breaks down substances called purines. Purines are found in some foods and drinks, such as liver, anchovies, mackerel, dried beans and peas, beer, and wine.
Most uric acid dissolves in blood and travels to the kidneys, where it passes out in urine. If your body produces too much uric acid or doesn't remove enough if it, you can get sick. High levels of uric acid in the body is called hyperuricemia."

- Source: Medline Plus http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/003476.htm

Chase figured, based on the distinctive scent, that he had thrown up the medicine. He basically told the nurse (Sarah), "That bad tasting stuff you gave me, that's what I threw up. You might have to give me more of it."

Can you believe that? Feeling as awful as he was, he was trying to make sure that she took into consideration the fact that he had thrown up the meds she had given him! I told him not to worry that she would consult with the doctors to see if he needed another dose.

He replied, "I know. I just wanted to remind her."

That made both Sarah and I laugh. Keep in mind, it was past two in the morning by now!! Amazing that he was keeping up with his meds like that!
Ok - here's where it gets a bit icky.

Unfortunately, the bandage over Chase's new chest catheter was "oozing" blood. "Oozing" being their term. He had a disc-like bandage that circled the tube into his chest and because it was saturated with blood, she had to change that. The circular bandage is infused with antibiotics to prevent infection, but when it gets wet like that it can burn the skin.

This is the part that killed me. She had to remove ALL of the tape and bandages covering that area. Before she started, he wanted to see what it looked like, so I used my compact mirror to show him. What went next was awful! If you know what it feels like to pull off a band-aid, that's nothing compared to what Chase was going through when they had to remove this bandage. Keep in mind, he was also already on morphine at the time, but it still hurt terribly. He asked me to cover his eyes so he couldn't see what she was doing, and he also didn't want her to explain what she was about to do either.

I told Chase to squeeze my finger when it hurt as tightly as he wanted, but he said he was too weak to do that. He was shaking and crying, but never yelled. Had I been him, I could have never remained that calm. She cleaned the area and re-bandaged it, apologizing to him the entire time for having to do what she was doing.

Chase then told her, "Thank you for trying to be gentle."

I was floored that he thanked her, but that just goes to show you what a great kid he is, too!

Once he was better settled again, I noticed that he felt hot and started trying to cool him off with cold washcloths. I knew fever could potentially be one of the side-effects, but I didn't think it would begin that quickly or the nausea either.

Once I was sure he was asleep again, I went back to bed, but he was up again close to 5 am vomiting. His nurse caught him that time, but his nausea was clearly worse. His breathing was erratic and I noticed that he was literally burning up. I grabbed two washcloths and kept them rotated on his head, face, neck, and arms. When I was able to ask her about his temperature, she said that it was 103 degrees! Chase has NEVER had a fever that high! I found myself changing the washcloths every few minutes because they would turn hot quickly as they absorbed his body heat.

He was breathing erratically, his oxygen levels were in the low 80's in spite of wearing an oxygen line. That was mainly because he can't breathe through his nose right now. So, they switched to a full face mask and his levels immediately went into the high 90's where they belong. I was concerned because he was still feeling queasy, but once he got on the face mask, he seemed to settle down and actually sleep. He had been very restless, his breathing pattern very off, but with the mask, that also seemed to settle as well.

After all of that he and I were both able to sleep until around eight in the morning when a couple of doctors came in to talk to me about Chase. A piece of very good news that they both shared was that there is no such thing as “catching” Leukemia early. Unlike other cancers (breast, colon), with Leukemia there apparently is no true advantage to catching it in the early stages. In fact, when I asked if they could determine how long Chase has had Leukemia, they told me that there wasn’t a way to determine that. Leukemia, unless you happen to have a blood test, basically would go unnoticed until it grows to a critical enough mass that symptoms begin to show.

Okay, to kind of wrap this up, here is the rest of what I can remember in bullet points:
• His white blood cell count was down from a high of 151,000 to 57,000 as of 6:30 tonight. Yeah!
• He won’t need another Fareze treatment to lower his white blood cells.
• He will need more platelets and another blood transfusion because his blood is not clotting and carrying oxygen as it should.
• He’s going to be in the PICU tonight and perhaps one more night because they’re concerned about his blood not clotting.
• By the time I left the hospital this evening, his temperature was normal and he was sleeping, although induced by morphine and other drugs.
• Chase was asking for a popsicle and juice when he was told he was cleared to have clear fluids.

Tonight, we pray, will go better. He had a lot of drugs in his system capable of making him nauseous on top of the anesthesia, but tonight he'll only receive two. Although it's difficult to be away from him, I'm at my mom's house tonight to spend time with my parents, my pups (Maya and Baxter), and most importantly William.

God Bless and thank you for your continued prayers!
Caroline