Tuesday, the 20th, was not like our normal clinic day. Nathan and Lily were up getting ready for school while I was getting ready for the day. Then I heard Kayla get up and go downstairs. A few minutes later, I remembered that Kayla couldn't eat anything (if she had to do the bone marrow test, she'd have to be put to sleep) and rushed downstairs to make sure she hadn't started eating her normal bowl of cereal. Nathan and Lily were eating breakfast, but Kayla was just lying on the floor watching cartoons. She had remembered that she couldn't eat or drink anything that day. Wow. That was the first time she amazed me that day.
After Nathan and Lily got on the bus, I got Kayla, Benson and Sadie ready to go and we headed out the door to Winco. Lily's class was celebrating the November birthdays that afternoon and she was the only one with a birthday in November (which meant that we were the only ones bringing treats--which have to be store bought). After grabbing some sugar cookies and drinks I piled the kids back into the car and headed to the school (which is out in the boonies. . .the other direction).
We got to the school and took the treats in to Lily's class. I didn't know if we'd make it back in time for the party. . . it all depended on Kayla's counts. If they were up and we did regular chemo, it would be a long day and we'd miss the party. If she had to get the bone marrow test, then we'd probably be done and back in time for the party. Each option had its pluses and minuses.
Then, I piled the kids back into the car and we headed home for about one minute. I ran inside and grabbed our stuff for the day. I had to be prepared for a full day of chemo--which means food and activities to keep us busy for about 6 hours. We then dropped off Benson at a friend's house and headed to Boise.
All this time, Kayla did not ask for any food or drink. She never even complained that she was hungry or thirsty. I was totally amazed. I had told her ahead of time what we'd be doing and she was completely comfortable with not eating, and going over to the hospital if we needed to do the procedure. That girl has come A LONG WAY. :)
At the clinic, Kayla got accessed and we waited for a little while for the blood counts to come back. They were down, neutrophils were only 530--down even further from the last week. Ugh. They need to be 1000 to do a chemo treatment. So, we walked over to the Pediatric Intensive Care Unit. It was the first time we'd been back there since Kayla's original admittance. That felt kind of weird.
The doctor came in and talked to me beforehand. I asked him what we would learn from this procedure or how it would help. He asked me if I was the kind of person who wanted a little information or a lot of information. I said a lot. So, he told me that the worst case scenario (which he had never seen before), the marrow changes as a result of the chemotherapy and is kind of leukemic or cancer-like (or something like that). In most cases, they just look at the marrow and can see that it is still working fine, but the neutrophils are low. They do the procedure just to rule out the worst case possibilities before they move on. Alrighty.
Another man (his ID tag said "Medical Staff" so I'm not sure exactly what he was. . . and the photo on his tag was a picture of Sleeping Beauty) came in and talked to us. He was very kid friendly and talked to Kayla a bit and asked me questions about how she does with anesthesia. Luckily, she has had no problems with it.
When it was time to start (by the way, Sadie had slept the entire morning of running around and was just now waking up. What a great baby!), Kayla let the nurses help her onto the bed while the man with the Sleeping Beauty tag (I guess he was the nurses anesthetist) gave her the anesthetic through her port. The doctor told me I could just sit and watch. . . which I wasn't planning on doing, but I decided to anyway. So, I had a clear view of the doctor cleaning an area on her lower back, numbing the site, sticking a huge needle thing in with a handle crank thing on the end (it kind of resembled a hose bib handle). He stuck a smaller needle inside the big one and drew the marrow out into a syringe. Then he used the handle crank thing to push around (I was glad she was asleep. . . he was putting a lot or pressure on that thing) and get a small sample of her pelvic bone. I asked him how big the bone sample would be and he told me that it is about the size of the tip of a pencil lead. When he was done, he removed the huge needle thing and bandaged up the hole.
The whole procedure took about 5 minutes. Then I just waited for Kayla to wake up. About a half hour later, she just sat up and said, "I want a cookie." Okey-dokie! So, I checked with the nurse to make sure it was alright if I gave her something and then got her a water bottle and a cookie. We watched a little PBS and then the nurse came in, de-accessed her port and said we could leave.
It ended up being perfect timing to leave the hospital and drive straight out to the school. We got there just in time for the birthday party. :) So, I helped make tootsie pop turkeys and then we came home.
And that was our day. Whew.
Kayla did great all afternoon, but by the evening she was starting to get sore. The doctor told me she could take Tylenol (yeah, right, like she'd actually take it, ha ha) for the pain, but that it shouldn't be too bad. By the time Kayla went to bed she was walking very slowly because she was in a decent amount of pain. I helped her into bed. She asked me if I would help her get out of bed in the morning if she was still sore. What a sweet, brave, strong girl. I am so proud of how well she did that day. She was constantly amazing me. She has come a long way. . .
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