Courage for Kennedy – Journal

February 20, 2006

Who Knew How Busy/Normal We Could Be???

Category: Family,Fundraisers,Gratitude,Treatment – Melenie – 10:46 pm

I am amazed everyday when I look at Kennedy at how resilient kids can be. God could do so much with us if only we stayed childlike…it’s no wonder He asks us to come to Him as a child would.

I know that I have been way behind but it is only because Kennedy is doing well and I’m trying to keep up with her. I am more than a week late on getting updates so I will just start there…

Friday, February 10, Kennedy had a 9:30 lumbar puncture with Methotrexate, IV Methotrexate and IV Vincristine. Her counts had recovered quickly so she got 130% of the normal dose. I was a little worried but held on to the fact that she had been doing well. Her ammonia levels had continued to be a problem, so Dr. Norwood moved us from 2x a day to 3x per day. Lucky us…more diapers! We are using more diapers now than we did when Kennedy was a newborn! This took some getting used to because she had been potty trained for almost 2 years when she was diagnosed. She breezed through it and even woke up hungry. Luckily, the people who work in the Heartbeat Café downstairs know us and whipped up some bacon even though it was closer to lunch. She devoured it and we were able to leave at a relatively decent time for a change.

The Indoor Garage Sale was this weekend. Many, many thanks to Katharine Wilson and Willamette Falls Hospital for organizing this event, it was a huge success! Thank you to so many who donated items, handed out flyers, worked the sale and helped with set-up and clean-up. I would like to thank my dad for working all day both days and spending an entire weekend posting flyers around Molalla and Mulino. The event raised over $3400!!! Yes, you read that one right! We were all expecting around $500 and would have been very blessed but this was amazing! Check out the link to the Indoor Garage Sale to find out what that much money is capable of doing for our family!

Saturday night we drove to Albany to watch our friends Adam and Ashley Fults ride in the Cupid’s Cowboy Rodeo at the Linn County Fairgrounds. They both did a great job! Kennedy was so excited to see Ashley, she begged me to take her down to where she was waiting for her ride. Kennedy had a chance to sit on Ashley’s horse, Dandy, and after the rodeo was able to ride Breezy bareback in the parking lot. What a thrill it was for her. We had not been able to see the Fults family since Kennedy was the queen of the last rodeo in October, the Boo Boogie Bash. It was wonderful to see them all again. A lot of people remembered Kennedy and came up to talk to her. The people at the gate selling tickets even recognized her and let our family in for free! She felt just like a celebrity. Kennedy even had a chance afterwards to say “Hi� to Wayne the announcer who has been following her story and was just as happy to see her as she was to see him. It was a wonderful evening…topped off with Christmas gifts from the Fults. Of course, they were horse related gifts! Kennedy was so excited and can’t wait to see them again. It was also Ashley’s sweet sixteen birthday later that week and we hope she will be able to drive up soon and visit with us.

I got a special break on Sunday…my aunt Judy and I had lunch at Sweet Tomatoes in Clackamas and then headed over to Old Navy where she blessed me with a new pair of jeans! Thank you, aunt Ju! It was nice to get away and just talk without interruption. Kennedy got to spend the afternoon with Uncle Mark, Chelsea and Joseph. She was just tickled because she got to help give Waffles and Peanut (the puppies) a bath. She could not stop talking about it all week.

We also traded in our dying minivan. It has not run the same since it was hit on the passenger side and over the last year it was telling us it could no longer go on. Unfortunately, we had no choice but to run it until had to be taken out and shot. Last year we went through several transmissions and it had begun to leak oil like a faucet…literally. It had no reverse, sounded terrible, smoked, was overheating until we fixed the fan and was very unreliable (having left the kids and I stranded several times!). Many thanks to Molalla Chevrolet who saved us. God works in mysterious ways…they happened to have a flyer from the garage sale in their window and we had Kennedy with us. Then the sales manager who negotiated with the bank, his wife had just finished chemotherapy a year and a half ago for cancer. We owed way too much on our van and we were prepared to tack it on but instead, they just ate the entire cost. They sold us a pickup for below blue book and kept the payments very reasonable. Now we finally have 2 reliable vehicles (remember we also have a car that Keith’s friends helped us buy and fix right before Kennedy’s diagnosis). With two parents always running all over this is such a blessing. God’s timing is perfect. We had tried to get rid of it a year ago and could not do it for what we could afford so we ended up putting over $1000 in it to no avail. The sales manager said that he told his wife it was the smallest deal he had ever made but our situation just really touched his heart.

Monday, since Grammie was off recovering, we met up with Auntie, Emmy and Amber for lunch. We went to Sweet Tomatoes and they loved it. Grammie, Auntie and the girls had never been there so it was a real treat for them. It is so fun to do “normal� things occasionally.

Back to Kennedy and our week…Tuesday it was back to the clinic for more counts and to check on her liver function. Her counts were fine; while they had dipped she was still holding her own. Her ammonia levels were down close to normal. We decided to back down to 20mg/2x. We were to return on Friday for a counts check and a liver function check. She also had physical therapy which continues to go well and she is walking better every week. Her new orthopedic braces should be here tomorrow or next week. She still has obvious foot drop/ankle issues, but she no longer toddles around the house. To celebrate Valentine’s Day, we took the kids to Godfather’s Pizza.

Friday, her counts looked great as far as handling the chemo but her calcium was dangerously low and her ammonia was back up. What a mess! So we added Tums to the regimen at 3x per day and continued with the Lactulose now at 3x per day again. Oh the diapers and cracked hands! I swear, if I never have a watery, poopy diaper to change again it will be too soon!! It looked like we were on for her last dose of chemo in Interim Maintenance 2 for Monday.

So what did we do this weekend?? Kennedy’s ANC was so good that we went to 2 birthday parties!!! Now if that is not doing normal stuff, what is? Saturday was Landy’s 7th birthday but first American birthday. Well, first real birthday celebration ever. Our friends, the Wilson’s, adopted Landy from Haiti and he had never had a birthday party before. We loved being part of it and enjoyed the beautiful smile on his face as he opened all of this presents, played with the kids and ate his very own birthday cake. What a blessing it was for us to be a part of the family’s joy. They are an amazing family and we look forward to celebrating future birthdays including those of their children who are still waiting in Haiti to come home.

Sunday was my darling niece and goddaughter’s birthday. Miss Emily is now 5!!! I can hardly believe it myself! We enjoyed a very fun afternoon at Build A Bear Workshop with many friends to celebrate. The kids made their own babies, bought clothes and then headed to the party room for cupcakes and to watch Emmy open all of her gifts. Austin made a dog named Mikey and bought him a football uniform and Kennedy got a purple bear named Princess. The purple bear is the Nikki #3 bear and a portion of the proceeds from the sales go to children’s charities. We found out from a sales associate that the Clackamas store’s proceeds go to children’s cancer research. So, if you are planning to go to Build A Bear, you could help find a cure for childhood cancer just by buying your own Nikki bear. You can’t miss her, she is adorable! Emmy had a wonderful birthday and Kennedy enjoyed the frosting on the cupcakes and watching Emmy open the gift we chose for her. Emmy had a wonderful time. My kids were excited to see Ally, Erica, Ryan, Aidan, Bekah, Emily, Amber, Haley and Conner. As I have said before, we have a new appreciation for the “normal� things…even the kids do.

Last night we did have something interesting happen…or I should say that Keith did. Around 1am he woke up with a sharp pain in his right ear and a lot of pressure that came and went every few minutes. He also had blood in his ear. Because he was getting over a cold, I was concerned that he might have a bad ear infection or worse that his ear drum had ruptured. He was going to go back to bed but I knew it must be bad if it woke him up. I mean the guy can sleep through ANYTHING. I insisted we go to the ER and have it checked out. We did and he had a real live bug in his ear. Not a bacteria but a living bug. I know this is stuff of urban legend but it was a bug and it was still alive!! It was scratching the heck out of his ear drum and causing pain. They drowned it with Lidocaine and numbed Keith’s inner ear. They tried flushing it and suctioning it but the bug had died with its wings open and its legs splayed so it was stuck. They were finally able to get it moved and after using equipment to hold his ear canal open, they used scissor clamps to reach in and get it out! It was an elder beetle which is very common where we live…OUTSIDE! If it would have been me, I would have lost it but you know Keith…he was totally calm about the whole thing. The doctor said it is extremely rare for this to happen to someone sleeping inside. They do see it in homeless people and those camping on the ground (outside). And everyone that he had seen with it had been running around screaming their heads off because it is so painful…not my man! As with all things, he was cool, calm and collected. The nurse joked as were leaving by asking Keith if he had a warm, dry place to sleep tonight…we just laughed. We got home about 15 minutes before his alarm went off so he decided he was awake and might as well go to work. I couldn’t believe it! I would have been staying home whining and sleeping all day. Now I know why everyone describes the guy as a “man’s man.â€? He is one tough cookie. His ear was bugging him (no pun intended!!) but he went after I put drops in it and didn’t complain one time. WE DID NOT TELL THE KIDS IT WAS A REAL BUG!!! THEY ARE ALREADY FREAKED OUT BY THE ELDER BUGS AND THEY WOULD NOT SLEEP IF THEY KNEW! PLEASE IF YOU SEE THEM DO NOT MENTION IT OR EVEN COMMENT ON THE SITUATION!

So today…her counts were great and she received 180% of her dose of Methotrexate and her normal dose of Vincristine. I was very concerned because her white count was over 5. Normal is about 10-14 but because their cancer is in their white blood count, it should not really be above 2 or 3. Dr. Norwood wasn’t too concerned but I did not like it one bit. He said that we have to use IM for a break and we can’t wipe her out all the time. I agree but it still makes me nervous. Her ANC was over 3000 and during maintenance they want it between 500-1500. Kids with higher ANC’s consistently during treatment often run a greater risk of relapse. Speaking of…Dr. Norwood gave us the bran today. While most leukemia kids have a 80% + cure rate, Kennedy is closer to 60% and 75% at best because of her high risk status, slow response and over sensitivity to chemo. He feels that a relapse now (before maintenance) could mean quality of life care for her because her body would not handle the very intensive chemo needed to get her back in to remission and cure her. A relapse during maintenance or in the 5 years following treatment and he gives her a 20-30% chance at survival. He did not feel that she is a candidate for bone marrow transplant because of the heavy chemo necessary to prepare for transplant. I asked him if he thought she was going to relapse and he hopes not…he just wanted us to know what we are looking at. It does worry me…just having this conversation at this point. He also shared with me that when she had VOD over Christmas he did not expect her to survive. He was very pleased and hopeful because she did but he was worried we would have to have “the talk� at Christmas. It has really hit me lately that we almost lost Kennedy. Wow…to even write it feels heavy. Today I just feel worried and have felt all along that we could be without her. I just pray for God’s will and I have faith that she can still beat this. We are coming up on Delayed Intensification 2 which almost killed her last time (DI1) so I have a lot weighing on my mind right now. This next round will include radiation and many changes from protocol that the drs. have yet to agree on. There are many drugs which have to be processed by the liver and Kennedy’s is still not functioning normally. Just sitting her makes me feel sick. Please pray over the next couple of months while we walk out the next test…we are really stepping out in faith. Dr. Norwood told us in the beginning that it is a very delicate dance between killing the cancer and killing the patient…now we know why. I just need more time to process what is happening and then I will be back to share my thoughts, feelings and ideas.

Do not be afraid of tomorrow; for God is already there. ~Author Unknown

The wise man in the storm prays to God, not for safety from danger, but for deliverance from fear. ~Ralph Waldo Emerson, Journals, 1833


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