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
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