Courage for Kennedy – Journal


August 26, 2005

Category: Treatment – Melenie – 10:52 pm

As I’m sure many of you have figured out, we were admitted Tuesday for Kennedy’s first round of high dose Methotrexate and Leucovorin rescue. If the rest of IM1 goes this well, I will be absolutely elated! Of course, we haven’t yet seen the side effects but we do hear that some kids have no problems and this actually becomes one of the easier phases for them. I just pray that the nurses and other families were being overly cautious on this one and that the doctors were not being overly optimistic.

Kennedy’s ANC on Tuesday was 770 and her platelets were over 500! She was right where she needed to be to start and we were admitted to room 3520-near the Starlight Room. Amy, her chemo pal, arrived and she, Kennedy and Austin had a great time doing face painting, watercolors, and finger painting! By the end, the floor had far more finger paint than any of their pictures. They had a blast 🙂 Becky and Auntie came up and brought us tons of mouth watering food and Grandma and Daddy came to check on us and catch up with the news of the day. Kennedy went full throttle until she crashed at 2am! On Wednesday, Auntie had Austin so it was pretty quiet until Grandma, Daddy, Papa and Austin got off of work (Austin helped Auntie after all). Kennedy was exhausted from the night of rowdiness before and she slept the whole time they were there. When she woke at 8pm, she was tickled to find out Papa and Austin had brought her more egg drop soup from Schezuan Kitchen in Gresham (Kennedy and Grandma’s favorite!) Auntie showed up and Kennedy’s very most favorite nurse, Megan, was working and we had a blast playing and singing until the wee hours of the morning again! By Thursday, Kennedy had played Uno many times, painted, colored, taped everything everywhere, tie-dyed a pillowcase, played Mousetrap, cut and glued, sang Pineapple Princess and Redneck Woman over and over and over, played her melody harp, watched movies and played hospital Bingo (adding another Barbie to her growing collection) and was ready for new visitors. She was thrilled that Aunt Judy joined us for lunch (and she LOVED the sugar cookies from Chelsea-Mommy was only allowed ONE!) and Papa Mike, Aunt Linda, Ellissa and Tyler came to visit. Kennedy enjoyed having Ellissa to entertain her (she even convinced her to go to the playroom) and Austin was so ready to play video games with an equal opponent when Tyler showed up. Aunt Judy made us all laugh with her funny stories and I loved the taco salad. As if all that wasn’t enough to make Kennedy’s day wonderful, that evening Megan was back and Becky and Kadin came with very, very good Creole chicken. Kennedy and Kadin have known each other since they were babies but with our busy lives haven’t spent much time together lately. You would never have known it. They played Uno and Mousetrap, made LOTS of pictures to tape in Kennedy’s room and made the floor wet and slippery blowing bubbles until Becky and I were exhausted and ready for bed. When Grandma dropped Austin off at 6:30am, Kennedy was out cold and wouldn’t wake up until 10am! We were all clear to leave this morning but what a HUGE job it was for me to get everything packed up and out to the car with two kids in tow. It took us until well after noon to get home. Who knew that we could accumulate so much junk in just a few days????? When we arrived home we were thrilled to be greeted by Papa Mike and the crew. They gave Kennedy pictures of her Bailey girl and we had the opportunity to visit a little bit longer. As if all of this wasn’t wonderful enough, when I went to the post office, there was a fun package waiting from our friend, Rebecca who lives on the other side of Oregon in Ontario. What a nice way to end the week, huh? Of course, I’m sure there are details I’m leaving out but it all boils down to a fun week with lots of loving visitors. It was so nice to be at “Hotel Emanuelâ€? for treatment and not because Kennedy was sick. She was a handful to keep up with (she was confined to her room the first couple of days because of her ENORMOUS bag of chemo, you know, hazardous material) but all the visitors and staff made it very manageable and dare I say, pleasant?

Ok, so here are the boring details of our week. After getting her numbers back, Kennedy did have to have a lumbar puncture with intrathecal (in her spinal fluid) Methotrexate. When administered this way, there are virtually no side effects of the drug. The great news was that her spinal fluid (and therefore nervous system) continues to be clear of leukemia cells. When she was diagnosed with such a high white blood count, they were terribly worried she would also have leukemia in her spinal cord and brain. What a blessing that it was clear from day 1. We then went to our room where Kennedy received over 6 hours of fluid to insure she was well hydrated before they began her 24 hour dose of Methotrexate. They started that with a big half hour push and then ran it over the course of time at the equivalent rate of drinking a can of pop an hour. After the 24 hours was over, they ran fluids at that rate which meant Kennedy was going to the bathroom a lot! While she was awake it averaged about every 30-45 minutes. They measured and tested everything to watch her body process the chemo and to ensure that it did not build up in her kidneys and other organs. When the chemo was over, they also continued monitoring her vital signs and doing blood draws to watch and see what was going on internally. Everything went better than planned. Her body had no problem putting the chemo to work and pushing it on through. After the last 3 months, that was such an answer to prayer. Now of course, the hope and prayer is that her body will continue to handle it well and that the mucousitis will not flare up. That is what causes the mouth and intestinal sores. Some kids don’t have any of these, some have a few and some really have to fight them with all they have. It would be nice for her to have a break, we’ll wait and see. If they are going to rear their ugly heads, it will be this coming week. Kennedy has an appointment at the clinic on Tuesday to check her counts and see how she is doing and will be admitted for the next round on September 6. She continues to get the drug Vincristine and is starting to show neurological side effects from it. Along with the lack of reflexes, she is favoring her right foot and has begun doing the ever popular “foot slapâ€? often seen with this chemo drug. I had noticed it before but when my father-in-law mentioned it (after not seeing her for about a month) I knew that I wasn’t imagining it. One more thing to talk to Dr. Norwood about on Tuesday I guess. We will also be discussing another appetite stimulant. Yesterday she ate a small bag of Cheetos. Literally, that was it for the whole day. That is definitely one of my biggest worries in all of this. Nurse Megan asked if she could bring Kennedy a treat (thinking she would ask for ice cream or something like it) and all she wanted was a cucumber. When Megan brought it, she only ate about 3 slices. This would be great if it was me but she is a little 4 year old!

We will be at the fundraiser tomorrow!! Kennedy is doing so well and Dr. Norwood thought it would be great for her, so please join us. The club is very easy to find and we would love to see you there! We will also have T-shirts for sale!!! It is true, the shirts are finished!!! Get yours today-we have a limited supply!! If we sale out, we will be taking orders and will get those as soon as they can be printed. Thank you to those who already have their orders in-we’ll get those to you ASAP. They are going to be adorable and as soon as possible we will have pictures of Kennedy in hers on the website.

Please pray for our friend, Rebekah. She had a terrible time with radiation therapy (for Ewing’s Sarcoma tumors on her face and neck) and now is suffering from complications. As a result, her radiation had to be stopped for now. Please visit her site at www.helprebekah.com

Also, continued prayer for our other friends fighting cancer:

Warren-Burkitt’s Lymphoma
Joshua-Ewing’s Sarcoma (recently finished chemotherapy!!)
Gage-Ewing’s Sarcoma
Maggie Mae-Mixed Lineage Leukemia
Kaitlin-Acute Lymphoblastic Leukemia
Oliver-Acute Myelogenic Leukemia
All of our friends fighting Acute Lymphoblastic Leukemia at www.ALL-Kids.org

Love-Hope-Courage

Melenie

Leave a Reply

Your email address will not be published. Required fields are marked *