Happy Halloween! I'm happy to say that Kayleigh's still feeling great! :) She had another good week with just a little nausea here and there, but overall good. She was able to have a play-date, go to dance class, attend the Girl Scout costume party last night, and yes, will be trick-or-treating tonight. We're thrilled to see her this happy and seeming healthy!
She had an appointment yesterday at Children's. First they drew blood and did a CBC, as well as some other labs. Everything checked out okay, so she was able to begin Phase 3 of her treatment plan. She received fluids, a steroid boost, and IV antibiotics yesterday. She was also able to get the two different types of chemo originally planned for, Vincristine and Methetrexate. I think my spelling's correct! So far, so good, as far as side effects go. The doctor said she wouldn't get any for a few days if at all this first time around. Kayleigh's plan consists of these two chemos every 10 days for 8 weeks. The chemo depends on her blood counts though. If they're too low, they'll send her home without treatment and bring her back in within a few days for labs again. So the 8 weeks could turn into more. The doctor said this was common and not to worry. The chemo can also throw off her neutropinia levels which can result in fever, so we were told. Anytime she gets a fever, praying she doesn't, it will result with a 3 day stay at the hospital receiving IV antibiotics. Of course, she's beginning this phase at the beginning of the holiday season...her birthday, Thanksgiving, and Christmas. We're all trying to remain positive though, we have to! In the grand scheme of things, we want her well, for sure. We have to hope though that she doesn't have to spend any of these holidays in the hospital though too.
Kayleigh has continued to have a great week! She's been feeling well since her lumbar puncture last Monday. She's been very happy and has wanted to do the things she has always enjoyed doing. Dancing...playing outside...going pumpkin picking...writing...going to school...attending a wedding...and much more. It's nice to see her feeling a little bit more normal and have a smile on her face. She went to school all day for four days last week and we're hoping for the same this week. She loves school so much!!!
Kayleigh will hopefully begin Phase 3 this coming Friday, Oct. 29. It will all depend on her blood counts. If they're good enough, she will get two different types of chemo through IV drip. From what we've been told, it sounds like this phase may be a difficult one for her. Please continue to keep her in your prayers.
I'm a bit behind on thank you cards and so is Kayleigh. I've tried to write them here and there, but it seems when I get any down time which is usually in the evening, I end up falling asleep right away. So I'd like to take a moment and say thank you. Thank you to everyone who has continued to send Kayleigh and our family prayers and positive thoughts. Thank you also for the many get well wishes full of sunshine and love you've sent Kayleigh, as well as the "fun" packages to put a smile on her face. Our family appreciates all of the help (dinners, carpooling, babysitting, etc.) that many of you have given us as well. Your love, support, encouragement, thoughts, and prayers are helping us get through each and every day. Thank you from the bottom of our hearts! With love and hugs, Michelle :)
I just wanted to share with everyone that Kayleigh continues to feel better and better each day. She went to her sisters soccer games with us this morning. Yes, she was all bundled up and enjoyed the rays from the sun. She had an energy boost during game 2 and asked to play soccer with her other sister on the empty field. I thought, "what could it hurt!?!?" She had so much fun and it was wonderful to see her being a "normal" child.
I did want to share a quote from Kayleigh that she stated last night after she was given a "Cancer S-cks" pin from her great aunt Jonelle. In Kayleigh's words, "Cancer stinks just like daddy's feet!" LOL!!! She's so right!!! :)
Home at last! Kayleigh ended up being admitted Sunday night after spending 7+ hours in the ER. Her fever just wouldn't go away and she had developed severe headaches that made her slur her speech, talk slowly, and become dizzy. Kayleigh was at the hospital from Sunday through 9:00pm Tuesday night. Poor thing, she wouldn't eat or hardly drink. Her personality was not the sweet, polite young lady we all know and love. It's really difficult sometimes for me when she's like this because we have a very loving, caring relationship as a mother and daughter should have. It seems to be me that she takes everything out on which breaks my heart. From talking in a very mean way, to sticking her tongue out, to pinching, I get it all and these are not things she would have ever dreamed of doing in the past. I know it's not her doing these things, but this nasty disease testing me.
The doctors did many cultures on her blood and other bodily fluids, a CT scan, and an MRI. They never really said what they were looking for, Jason and I could only speculate it was a brain tumor or more cancer. Of course we were thinking the worse, as it's hard not to at times. Fortunately, the CT scan and MRI were both clear and showed NOTHING in the brain. The MRI did show some sinusitis and a fluid showed that she does have a nasty virus, causing the fevers and upset stomach. The doctors determined that the severe headaches were a result of the lumbar puncture she had last Thursday. You can't imagine how much pain she was in, well maybe if you suffer from migraines. She couldn't hardly move and she'd get horrible pains in her forehead that made her dizzy and caused nausea. Her eyesight was also blurry and she was sensitive to light. We just felt so bad for her. Just to think that this was suppose to be the "laid back" phase of her treatments. We can only hope we can keep her virus and illness free for the remainder of her treatments. That will be easier said than done, that's for sure!
Well, Kayleigh got her first fever since diagnosis yesterday. Thankfully the clinic (doctor's office at the hospital) was still open so the nurse had us come there instead of going to the Emergency Room. By the time we got there, Kayleigh's temperature was over 101. For most kids, that fever is not that bad, but for children fighting cancer, it can be very serious. Anytime she gets a fever like this, she has to be seen and given antibiotics through her port for three days either at the hospital or at home. Fortunately, we were able to come home with Kayleigh accessed to get the antibiotics here. It is the ANC (immune) level that determines whether she stays in the hospital or is sent home for this treatment. Hers was high enough that they allowed us to come home. Needless to say, it was a sleepless night. I feared her temperature soaring. It did end up going over 102 even with the Tylenol. We have to keep a close watch on her. If her temp gets to 103 or higher, we have to get her back to the hospital. The doctor said that it is common for these children to get many fevers during the fall and winter (flu season) months, especially when they're in school. I guess we now know what this fall and winter will be like for Kayleigh and our family. As always, thank you for your continued thoughts and prayers for Kayleigh and our family.
Kayleigh had her second lumbar puncture for Phase 2 today. Once again, she was brave as can be and did quite well. The staff at Children's is absolutely wonderful, each and every person that's crossed our path so far. Today we were blessed to meet a very special nurse who has something in common with Kayleigh. You see, this nurse was diagnosed with ALL at the age of 13. She is now an adult, married, and an oncology/hematology nurse. What an inspiration she was to us! She was comforting and gave us more HOPE than we already had. Thank you, nurse Alyssa!
Dr. D also gave us some good news today. The genetic, chromosomal test he ran on Kayleigh's bone marrow had good results. Her cells were able to grow normally in the two weeks time. The first time he did this test, they did not, so he repeated it two weeks ago. This time, he saw the results he wanted. He also said that with her spinal fluid being clear last week and with these results, she truly is in good remission. This is wonderful news!!! It doesn't mean that she's cured, however it does mean that the treatments are working and they have the leukemic cells under good control. We hope and pray that the results continue to show these same positive results. Kayleigh continues to have a long, rough road ahead of her with 2+ years of treatments and ups and downs. We can't thank you enough for all of your continued positive thoughts and prayers for Kayleigh and our family.
Hi it's Kayleigh again! Last night was such a blast. I had sooooooomuch fun talking with my friends and family some people I didn't even know I talked to. I rode in a wagon for most of the time but I got out and walked a real little bit at the end.
Today I had my treatment and it went just fine. I even helped the nurse draw my blood and give me my medicine! Mommy said she could never do that. Guess what I had a bowl of cereal before bed last night and didn't get to eat until 1:00 today the doctor was late (really late). Thanks for your thoughts and prayers!
Love Kayleigh
Happy Halloween! I'm happy to say that Kayleigh's still feeling great! :) She had another good week with just a little nausea here and there, but overall good. She was able to have a play-date, go to dance class, attend the Girl Scout costume party last night, and yes, will be trick-or-treating tonight. We're thrilled to see her this happy and seeming healthy!