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

Saturday, March 28, 2009

Chemo Update 3/27/09

Chase is receiving 3 chemo meds right now and is, as I type, fast asleep.

Chemo med #1 (Cytarabine) is an IV injection every 12 hrs for 10 days.
Chemo med #2 (Daunorubicin) is red and will be given over 6 hrs on days 1, 3, and 5
Chemo med #3 (Etoposide) is once a day for 5 days and given over 4 hrs.

He was given an anti-nausea medication before they started as a precaution. He started just after 9pm tonight and we're praying for a best case scenario of mild side effects. I would love to shoot for no side effects, but we have to be realistic. Right now, I'm just pleased he's sleeping.

God Bless!
Caroline

Friday, March 27, 2009

Out of Surgery! March 27, 2009

Chase went into surgery at 4:45 this afternoon after waiting all day for them to take him. Before that happened, he had a small blood transfusion to increase his red blood cell, a platelets infusion, and several other medicines in preparation for the procedures that he would have.

There were four things they did today:
1) They inserted a chest catheter with two lines so they could both simultaneously draw labs (blood samples) and give chemo therapy or other meds.

2) Did a spinal tap to test his spinal fluid for Leukemia cells.

3) Did a chemo treatment on his spinal fluid. The reason why his spinal fluid has to be treated separately is because the chemo treatment will not filter into that fluid. Leukemia cells can "hide" in the fluid and re-emerge later causing a relapse if they aren't treated.

4) They took some bone marrow from his hip to see what the "baby" Leukemia cells look like. Apparently, that's where the new cells are generated from oddly enough. They also took a small bone sample as well.

They are talking about possibly giving him his first chemo treatment tonight. His reaction to the chemo could be anywhere from mild nausea to severe. I'm praying that he will handle this treatment well and they are already administering meds that will proactively take care of that reaction and some others.

Thus far, everything has gone smoothly. I was just told by his attending nurse, that an AFLAC nurse will be coming in tonight at 9pm to administer his first chemo treatment, so please be praying for the best case scenario for him regarding any reaction he might have.

Again, thank you from the bottom of my heart for your prayers and well wishes. I can't begin to express how much they mean to all of us!! I will be reading your responses to Chase and I'll see if he's up to dictating an update.

God Bless all of you!

Caroline

March 27, 2009

Posted Mar 27, 2009 11:34am

Chase's white blood cell count yesterday was 141,000. Normal white blood cell count is typically 400 - 10,000. Today, his was 94,000!! I know it's odd to be excited about that number when it's still so far above the norm, but that means that Chase doesn't have to have another Fareze treatment before he can go into his surgical procedure today!

He slept very well last night - better than I did. He asked for something to help him sleep, but by the time I was ready to ask his nurse, Charlie, Chase was dead to the world!!

As I write this, he's getting a blood transfusion to prepare for his surgery. He needs this because his red blood cell levels were lower than they wanted (needed). I'll post a bit more later about the procedure he's having later today. Right now we don't know when that will happen because they are having to work him in.