My day started early with Kennedy throwing up formula all over me at 5am. Not exactly how I had planned it. The benefit was that I had some time to pray after cleaning everything up and waiting for the alarm to go off. I’m sure that is what helped my day to run much smoother. After getting the kids up and ready, I got a call from Keith letting me know that traffic was a disaster because of all the gawkers checking out the flat tire on the side of the road. Great…Austin ended up being 10 minutes late and Kennedy was 15 minutes late. It turned out ok because she wasn’t up to doing pt so Amy just worked on casting her feet to make molds for her new foot/leg supports. Kennedy continued to be sick despite not being hooked up to her food. Our appointment at the clinic wasn’t until 1:30 but we decided to see if we could get in since it was 10:30 and I hated to run all the way home just to come back to Portland. Despite being completely booked for the morning, Dr. Olson said it was absolutely fine and to work us in. Kennedy took a short nap (thank God) while we were waiting for her cream to work and did great the rest of the day. Her bilirubin was almost normal but her enzymes and ammonia were still too high. It’s always something, but she did just get more chemo last week. Her white count is dropping and her platelets are lower but not critical. They will check again on Friday and Dr. Olson said it was okay to leave Kennedy accessed-much to her delight. They were then able to squeeze us in for her occupational therapy evaluation at 1:00 (like I said, God sure worked out timing for us today!) and she definitely needs intensive work here just as she does with physical and speech therapy. I will have more information when I get the official reports-she just had a LOT to say today. We then headed down to the business office to work something out with our bill (now nearing half a million dollars!!!) and it looks like the hospital may write off 100%!! This is the hospital, day treatment, pharmacy when inpatient, therapy, clinic, radiology and radiation therapy, etc. We are not holding our breath but she said the committee is aware of our situation and are just waiting for the rest of our paperwork to come in. What a blessing that would be and would leave us with managable medical expenses (10-50 thousand) and care expenses. Please continue to pray for God’s prevision and hand in our financial situation. The insurance continues to be such a pain! They are pre-certifing almost everything (at the wrong hospitals but that’s another story) then not paying for anything-just reviewing and denying. We have always believed that God has a plan for EVERY SINGLE piece of the puzzle and the finances are just another piece. I meditate and pray daily and continually recite Jeremiah 29:11. I KNOW that God has a plan and a purpose for all of this and while He did not give Kennedy cancer, by allowing it to occur His will will be done and lives will be blessed and changed through this. He is such an awesome God! Am I ever mad???? Absolutely! Am I ever down and depressed? Sure! Do I ever question what in the world is going on??? Daily! But I know who is in control and because of that I can always move forward. One look at my daughter and I can’t help but have faith.

So tonight…Kennedy is still freaking out every time I even mention turning her food back on. I may just have to wait until she is out. Once she starts vomiting the idea of putting things inside her tummy is enough to upset her. She told me today that she wishes this stuff would just get out of her head (Kennedy has decided-after getting to ride in the front of the truck one time-that she gets car sick now in the back and I told her I thought it might be all in her head. She agreed and now she wishes all the bad things in her life would just get out of her head. Don’t we all!). We did get a pleasant surprise in the mail…we had turned in our receipt from Kennedy’s nutrition to Candlelighters and they were able to reimburse us for $750! That will definitely help. Many thanks to the wonderful organizations out there that help “cancer families.”

The rest of us are doing well and just moving along. We are planning to go the rodeo in Albany this weekend. We haven’t been back since Kennedy was the rodeo princess. Also, the t-shirt sample will be here tomorrow so they should be ready very, very soon as should the bracelets. The Indoor Garage Sale is this weekend and there are upcoming fundraisers planned including a benefit concert on March 4th and a raffle of some fabulous prizes from Timberline lodge-including a season’s pass of skiing valued at over $700 for next season!!! Thank you to Timberline and the staff and students at Oregon City High School that are working hard to raise money to help with Kennedy’s medical expenses-especially Tiffany Redwing for getting the word out about our girl to the OCHS community. Thanks to the many businesses in Molalla and Mulino who were willing to post flyers for the upcoming Garage Sale at Willamette Falls Hospital (and to Kennie’s papa who spent his Saturday morning going everywhere to ask) and also to Spurs in Molalla for their very generous donation.

In My Daughter’s Eyes-Martina McBride

In my daughter’s eyes I can see the future
A reflection of who I am and what will be
Though she’ll grow and someday leave
Maybe raise a family
When I’m gone I hope you see how happy
she made me
For I’ll be there
In my daughter’s eyes

Love-Hope-Faith,
Mel

Our days just got easier…we were able to find a stroller that is lightweight and will hold Kennedy’s weight. The best part? It was only $40 brand new! We looked everywhere and couldn’t find anything. I was totally unwilling to spend much since she is 5 years old. Even in checking on-line I couldn’t find anything at a decent price-especially after shipping costs were added in. I checked our friendly neighborhood Kmart before giving up and found a great stroller at an even better price. My back will be so much better!

Kennedy is doing great today. I’m going to be buzzing around trying to get things done-like cleaning my car and putting clothes away. Austin went to school and seemed to be feeling well today. It helps that things are becoming more normal around here.

Love-Hope-Faith,
Mel

Well, we’ve finished another week of treatment. Now we just have until August 2007 until we are home free!

Kennedy had a clinic appointment on Friday. Her blood counts are stable. They think she probably could have tolerated 100% dose but not 120% which is what they would have given her. Her liver function counts though looked terrible again. She had lost more weight and was now down to 38lbs so the feeding tube had to go back in. Her liver is not able to function anywhere near normal without enough calories, fat and protein so when she is not eating it starts having problems again. Her bilirubin was back up as were her ammonia levels (al was in the normal range and her bili was close to normal). This is such a delicate dance. We also increased the Lactulose again-lucky mommy! I changed 8 poopy diapers in one hour this morning. My hands are just cracked, raw and dry from washing and when I got in the shower last night, they just burned from the hot water. The insertion of the NG tube did not go well as you can all imagine. I don’t blame her really, I can not even fathom how horrible it must feel going in. Thankfully, and with much prayer, it only took about 24-36 hours for her to get used to it and stop gagging this time. Unlike the last time, where she was vomiting for 5-7 days, she did not vomit at all. I was so proud of her.

Kennedy had wanted to see Rebekah, a friend from the clinic, all day and didn’t see her until the NG tube was in and she was hysterical. I would have loved to visit too but Kennedy was in full blown melt down mode. Rebekah looked great and we ask that you pray for her family this week while they are put through a battery of end of chemo tests and await the results. Ewings Sarcoma is a nasty cancer and we just come against the enemy and claim healing and a long blessed life for Rebekah. You can meet Rebekah and find out more about Ewings at www.helprebekah.com

Yesterday I took Kennedy with me to go stamping at my friend Kristy’s house. It was great to get out and visit with everyone after not seeing them for so long. Kennedy had a blast playing with Jayden, Jadwyn and Tennisyn. She spends so much time around kids with cancer that playing with other kids is a luxury. Her ANC was at 1800 Friday so I just let her play and be a normal kid. Kennedy is feeling better today and we even went out to Chang’s last night with Grammie and Papa. Austin did not like it as well as he thought he would but I think he didn’t realize that the food was uncooked and you made it yourself. I think he thought it would be like a chinese buffet. Kennedy had some soup and rice with plum sauce and the adults of course, overindulged! We then hit Winco. Kennedy loves going shopping so she was thrilled. Now, I LOVE Winco prices but I HATE the store…kind of like shopping at Walmart.

Thank you everyone for your prayers. I am feeling much better and truly believe that I am on the mend from my little mess last week. I’m sure the medicine helped but prayer was the turning point. It is so hard to take care of Kennedy when I feel so crappy. Austin is also doing better. I think the majority of his problem is stress and anxiety though. Keith did have his appointment on Friday and please pray for him as he fights quitting chewing and smoking. This is a difficult enough task normally but add stress and it can be a downright battle. He is playing poker this afternoon and then we will all be watching the Superbowl-GO SEAHAWKS!!

So this week we have a counts check on Tuesday along with physical therapy and Friday Kennedy has an LP w/Methotrexate in her spinal fluid, IV Methotrexate and more Vincristine. She is having a lot of leg pain and struggling to walk so continued prayer for that. We are trying to find a stroller that will accomodate “steroid weight” but is light and compact. She has a jogging stroller but it is so long that it doesn’t fit well in the elevators or offices at the hospital. We are hoping to find something this week as it is getting very difficult to carry her all the time with her weight fluctuation and my back.

Please pray for all the kiddos fighting cancer, dealing with side effects and complications, recovering from treatment and facing long term complications. Also continue to pray for those families who have lost their dear children.

Love-Hope-Faith,
Mel

Another exciting week in the Duval/Platts house…Austin had some kind of tummy problem and missed school both Monday and Tuesday (I think it’s stress :)), Kennedy had her appointment on Tuesday and Wednesday, and I had a Dr’s appointment on Wednesday for my cough. So what are the results of all of this?

Austin is fine and back in school. I think the poor kid is working through a lot emotionally this year and having a hard time being away from us during the day. That would certainly create some tummy upset for me!

Kennedy did well on Tuesday. Her ammonia levels were in the normal range and while her enzymes and bilirubin are still high, they were closer to normal. Her platelets were 80-they haven’t been over 100 (140-440 is normal) since her last round of chemo. I expect she will need a transfusion by next week. It has been almost 3 weeks since she got her last dose of IV Methotrexate so she was definitely due. She also got another round of Vincristine (mean Christine). Today, Wednesday, she had to have her PEG injections. I put off telling her until the very last minute and she went in to a crying frenzy. I can’t really blame her-I would not be happy about getting routine shots in my upper thighs. She did well and insisted that she only wanted one nurse to do it despite the fact that she could only do one at a time. Kennedy also had to give a urine sample (no small task for a 5 year old with chronic diarrhea) and her urine was very concentrated so even though I told her we weren’t going to, her port had to be accessed for counts and fluid. Boy was she ticked off after all of that! She also had physical therapy on Tuesday and because Austin was there she did fantastic and we didn’t have any tears (her, I or Amy!) She made “Austin/worm soup,� she raced him on her scooter and played beach-volleyball. We talked about her new braces and our insurance “pre-authorized� them (which means that they will let someone make them and then refuse to pay for them) so Amy will be taking casts of Kennedy’s feet next week. After we get them in about 3 weeks, we will head to Soft Star Shoes in Corvallis to have new shoes made for Kennedy. Everyone should check them out as they make wonderful shoes for kids of all ages (infants to 100 years) and they are donating shoes to both Kennedy and Austin. They are not elves-they are angels in disguise. Kennedy was also supposed to have her occupational therapy evaluation in April (crazy, huh????) but after Amy explained to the OT department what it was all about, they are working to fit her in over the next two weeks. It is necessary for her to have her evaluation to start her boot-camp regimen. As most of you remember, she recently lost her NG tube, unfortunately, she is not eating enough and it looks like it will be going back in Friday. Wednesday her bilirubin and enzyme levels were back up and her protein levels were down which is a sign that she is not eating enough. She was also dehydrated and required a bolus of fluids before we could go home. Tricia, the nurse practitioner, told her if she didn’t eat dinner or breakfast she would be getting it back in on Thursday. She did eat dinner so hopefully she’ll eat breakfast too. Because she has control over very few things, she has chosen food as her battleground. This only makes getting her to eat or drink more difficult. If she gets below 17.5 kg it goes in for sure and today she was at 17.8 kg. Good thing we didn’t donate the formula and bags or take back the pump, huh? Other than that she is very active, playing, talking up a storm, walking better, antagonizing her brother and very, very happy. She looks great and her spirits are the best they’ve been since Thanksgiving. It’s hard to believe we almost lost her at Christmas.

Well, she’s doing better but apparently I’m falling apart. I finally was able to get to the doctor today (Wednesday) and I have a nasty lung infection but not pneumonia. I am on my own cocktail of meds now and hopefully will be better soon. That muscle I thought I pulled in my side the other night? Turns out I had a rather large, nasty ovarian cyst that ruptured while I was coughing. Nice. I had an ultrasound today (boy, there is a funny story to go with that one-you’ll have to ask me when you see me) and it was obvious to the radiologist what happened but I had to wait another 5 hours to get the info from my doctor. She told me not to do any heavy lifting and to take it easy-yeah right! Of course, I’ve been carrying Kennedy on that side since it happened because I thought it was just a pulled muscle. She said it would take a while to heal but should be fine. I guess it is always something. I figure with all the crap I’ve been through, it should be my turn to win the Powerball this week.

The way things have gone this week, Keith should be very afraid for his appointment on Friday. It probably won’t start out so great since I left a list of things for the doctor to talk with him about. Hee Hee 🙂 Well, you all know how he is…he’ll go in there and say that he’s “fine.â€? He’s just cruising along-being Keith-and is looking forward to warmer, dryer weather for working in.

Mom and Dad are doing great-planning their trip to Idaho in April for Grandma Marty. We all wish we could go but know that the Drs. will never release Kennedy to travel that far. Please pray for my mom as she gets ready to have carpel tunnel surgery next week and again in March. Pray for total and complete healing. My sister also has an upcoming surgery so please take time to pray for her as she heals.

Continued prayers for Oliver as his family makes some very tough choices during their difficult time and pray for Maggie and Nikolette’s families as they learn to move forward without their girls. Prayer for children finished with chemo who are now dealing with long term effects and/or lingering problems and those who are just learning to move forward without chemo…Warren, Rebekah and Joshua. Prayer for kids who are still fighting…there are many.

Many thanks to all who have taken the time to give to our family in so many ways-we are continually blessed by your love and prayers. God is so good and we should praise his holy name with all of our heart, mind and spirit. Praying many blessings for all of you.

Diseases of the soul are more dangerous and more numerous than those of the body. ~Cicero

I must give credit where credit is due…all of my quotes come from a wonderful site called “The Quote Garden” at www.quotegarden.com; check them out!

Love-Hope-Faith,
Mel

Watch for another raffle fundraiser with incredible prizes donated to Courage4Kennedy by Timberline lodge. If you love the snow and love to ski these are definitely for you!!! T-shirt proofs and bracelets proofs have been made and sent so look for these soon and don’t forget the upcoming Indoor Garage Sale. It is not too late to donate or help out…click on Indoor Garage Sale to find out how.

It’s amazing how quickly things can go from critical to almost normal. A month ago, Kennedy was still in the PICU fighting and now she is antagonizing her brother.

Friday, Kennedy had a counts check and I thought we would be getting chemo. This Interim Maintenance 2 phase is really confusing. Apparently because her numbers weren’t good on the 20th (scheduled chemo day) they needed to take them again in 4 days (the 23rd) and while they weren’t high enough to get IV Methotrexate, it was absolutely necessary to give the Vincristine at full dose. So, then we went in on Friday (the 27th) and she is not due for chemo until tomorrow (the 31st). It looks like her platelets will be high enough tomorrow so she will get more Vincristine and IV Methotrexate. Because she had a hard time metabolizing it (due to her liver) and it took too long for her blood counts to recover, she will only be getting 80% of what she got last time as opposed to the 120% increasing dose. If she handles this well then in 10 days she will get 100% again. Her liver is still not processing enzymes or ammonia well, so it was necessary to increase the Lactulose again to 20mg/2x per day. We were all so happy. NOT! It causes almost continuous diarrhea. Thank heaven for Butt Paste-yes, that’s really what it is called and she would be in a world of hurt without it. She also pulled her NG tube out on Thursday, purely by accident. She was behind the front door getting something out of her DVD bag and it got caught on the zipper but then I opened the front door from outside causing her to sit and out it came. I was shocked that it was just lying and the floor and Kennedy was totally oblivious to it. She has been eating a lot so after talking to Tricia, we decided not to put it in at that time. We still however, have 5 ½ cases of Peptamine Jr. worth over $1000 that we will have to pay for because the insurance company decided not to pay it after pre-authorizing it. We are going to keep it rather than donate it until Kennedy goes in to maintenance so we don’t have to buy it again if she needs another NG. We will be fighting them and hopefully getting reimbursed for all of these expenses. I guess either way it will be fine as we can use it as a tax right off! Always trying to see the glass half full!!!

Saturday I met my sister for breakfast and then we headed to a day of Scrapbooking with her friends. It was so much fun and I was able to get Austin’s 2nd book finished and get started on Kennedy’s 2nd book. It was nice to have girl time and laugh and talk about kiddos and husbands and such. I will just leave it at such but they all know what I’m talking about! Tammy generously opened her house and everyone made me feel so welcome. She even sent me home with what was left of dinner-yummy enchiladas! They were fabulous! I was totally crashing around 6 pm despite their enthusiasm to scrap all night and went home early to hit the hay. After having the kids all day, Keith went to get some quiet time by heading out to a late showing of Underworld. Not my idea of a good time so I just went to bed. Sunday we had a date afternoon and ate at our favorite place: Chang’s Mongolian Grill.

I do have this nasty chest cough thing that is hanging on and I even pulled a muscle in my side last night so please pray for healing and that it doesn’t become pneumonia. It’s hard to justify going to the Dr. when my only symptom is a cough-no fever, stuffiness, ear ache, etc.

I was thinking the other day…God does not promise that our life will be free from adversity or troubles when we choose to follow Him, only that He will walk beside us and carry the burden. This life has been full of struggle and at time overwhelming but boy, has it been rich. I am having a fabulous time and I am learning something new and wonderful about Him every single day. He is showing me things I have never dreamed of and allowing me to share those experiences with others in ways I never could have before. Is this journey hard? Does it hurt? Sure, but oh the blessings that He has given me and the insight has been worth every tear and every stumble. It is true that we do not learn from our successes in the way that we learn from our failures and we can not possibly comfort others in a genuine way when we do not understand the darkness they are walking in. Despite all that I have walked through (and that is for another day), I can look at my life and see tremendous blessing and richness far beyond what is in my purse. Had I not walked through so much before, I could NEVER have walked through this journey with Kennedy. I would have been swallowed up in darkness if I had never seen the triumph that comes after the journey-the pure and illuminating light that comes when His path is followed and healing has taken place. I know that I know that regardless of how this journey ends, He has a plan and his purpose is for a greater good. We do not have a heavenly Father that would allow suffering without having an incredible reward. I know that we may never see how He uses this but I know without a doubt that something miraculous will come of it. After we almost lost Kennedy over Christmas, I began really thinking about and praying about what my part is in this journey. I can NOT be God to Kennedy or anyone else (nor do I want to be) but I do have a part to play. Whether we have Kennedy for a year or 80 years is not up to us but what kind of quality of life am I offering to her, Keith, Austin, my parents, grandparents, sister and family, extended family, friends, those I come in contact with everyday and most importantly myself. What is the quality of my life here? It is not about possessions or money. It is not about vacations or success. It is about living the life that He would have me to live. It is about having Jesus shine through me everyday in such a way that there is no question as to who I follow. It is about sharing my life with those I love and care about the most and making them a top priority in my life. It is about showing kindness to everyone-even the creep on my tail that I just have to let pass. 😉 It’s about fulfilling His purpose for my life and laying mine aside. What I have found in reading about others journeys is that when we truly listen to Him, His desires for us become our desires and we truly are fulfilled in all we do. Here’s to following His purpose for your life-May you always see the right path for you.

Many heartfelt sympathies and love to Nikolette’s family. She ended her battle with ALL on Friday, January 27th after fighting for over 10 years. God and heaven are rejoicing at the sight of their new butterfly.

A little faith will bring your soul to heaven, but a lot of faith will bring heaven to your soul. ~Author Unknown

Love-Hope-Faith,
Mel

My dear friend Becky has tagged me! Really, it’s true…

Four jobs you have had in your life:

-Drive through girl at McDonald’s
-Athletic shoe salesperson at Athletic X-Press
-Receptionist for a collection agency
-Photographer for Olan Mills

Four Movies you would watch over and over:

-All of The Lord of The Rings movies
-The 13th Warrior
-Anne of Green Gables
-Wizard of Oz

Four Places You’ve Lived:

Portland, Oregon
Kent, Washington
Yakima, Washington
Mulino, Oregon

Four TV Shows you love to watch:

-ER
-Judging Amy
-Law and Order SVU
-Oprah

Four websites I visit daily:

-Growing Acorns
-Help Rebekah
-CaringBridge sites: Josh, Oliver, Kaitlin, Gage and Warren
-Courage4Kennedy

Four of my favorite foods:

-Chang’s Mongolian Grill
-Szechuan Kitchen
-Mexican food
-CHOCOLATE

Four places I’d rather be right now:

-in my bed taking a nap
-at school (GO BEARCATS!)
-somewhere tropical with just my husband
-Disneyland with my family

Four bloggers I am tagging:

-You’ll have to wait and see! 🙂

The organizers had a little glitch in their e-mail and lost all of it. If you had sent them one regarding the sale or donations, we would appreciate you taking the time to re-send it so they have time to respond. We really are blessed that everyone wants to help so much and could never do it without you. Thank you, thank you, thank you for taking the time to do this for us-You all make it possible to keep fighting!

Love-Hope-Faith,
Mel

Well, we survived another day at the clinic and we got some good news and some not so good news (I just hate to say bad news at this point!). Kennedy’s bilirubin levels were low enough to receive her Vincristine (Mean Christine) and her white count is in check. We were so excited to see Kaitlin and her mommy and are absolutely thrilled that they will be joining us in Mulino! It’s true! They bought property near us and are building a house! How fun for all of us. Keith and Roger actually knew each other before the girls were diagnosed and we met in day treatment. The girls are only a year apart and we can’t wait to get them together outside the setting of the hospital. Kennedy has also gained 2lbs this week. I’m sure it has a lot to do with the fact that she is no longer vomiting and eating in addition to receiving formula through her NG tube.

Now the not so good news…Kennedy had pt today and it was obvious to Amy that her foot drop is significantly worse. She is now walking with a “toddle.” She walks with her feet apart and toes pointed out, then she toddles back and forth to get where she wants. Dr. Olson said that she now considered at Level 3 toxicity to the Vincristine. At Level 4, when she is unable to stand unassisted, they will either discontinue the Vincristine or significantly modify it. Amy will be talking with Dr. Shih to get Kennedy some different style foot braces that will have a hinge allowing her foot to pull up but not flop down. Because she has many doses of Vincristine left, she will be wearing them for a while. Dr. Olson again brought up the idea of testing Kennedy for a genetic disorder called Charcot-Marie-Tooth Syndrome. CMT is defined by Linda Crabtree as “It is also called peroneal muscular atrophy because the peroneal muscle down the front of the shin that enables you to pull your foot up is usually the first muscle to be affected. A weakened peroneal muscle can cause sloppy walking, drop foot which causes tripping and you must lift your leg from the thigh so that your toes clear the ground and your foot slaps onto the ground, hopefully heel first.” Check out her website at http://www.kaikracht.de/cmt/english/text.htm for more information. She will first need to have a EMG or electromyography to determine what strain she should be tested for. An EMG is a test that assesses the health of the muscles and the nerves controlling the muscles. You can find more information about this test at http://www.nlm.nih.gov/medlineplus/ency/article/003929.htm. It is not a rare condition but is not often seen in children. It most often affects older people but because my grandparents had diabetes, polio or died young, it’s very hard to tell if they had it without testing them. Unfortunately, all it means is that they will be more aware when dosing her chemo and in treating her for therapy. Kennedy also was given a new prescription to deal with the side effects of Vincristine. She has been having severe pain and says that it feels like “needles coming out of her skin.” It is common to have a “pins and needles” sensation similar to your foot waking up but what she has is more than this. She literally tenses up and screams. It is often centered between her shoulder blades which is also frustrating because she can’t reach it. This new med will hopefully help ease this pain or at least decrease it’s frequency. Kennedy’s counts were also too low to receive her IV Methotrexate. Her platelets needed to be 50 but were only 46 so we will be back on Friday to check her counts again. I guess it is always something!

Oh, I forgot to mention that it looks like the “boot camp” therapy is the plan. Kennedy will be so thrilled after the episode she had today! She had decided that she was done walking and navigating unstable surfaces and just gave up. She began screaming and demanding that she needed me. It was very difficult for me to stand by and not rescue her from her work. I try not to intervene unless absolutely necessary so I stood by even after she went to the “quiet room” with a timer to regain her composure. I can understand her frustration but also know how important it is for her do her exercises. Boot camp ought to be a blast 🙂

Things continue to go good here though. I’ll be glad when she gets back to her normal sleep patterns. Being in the hospital for so long only confuses your body about normal cycles with night and day so we are having problems getting back to that. Check out our fundraisers page for the upcoming Indoor Garage Sale. Oh, and we are working on the guestbook issue so please do not despair. We meant to stop in and see Rebekah today but we finished up at the clinic just in time to get Austin from school-hopefully we’ll see her and her family soon.

Pray for all the kiddos fighting cancer or working through the effects of treatment including:
Gage
Joshua
Oliver
Nikolette
Madeline
Kaitlin
Rebekah
And many, many more…

Every tomorrow has two handles. We can take hold of it by the handle of anxiety, or by the handle of faith. ~Author Unknown

Love-Hope-Faith
Mel

Now that we’ve been home for a few days it was time to get back to our real lives. I had the pleasure of paying bills, cleaning my messy bedroom/office, doing laundry, etc. And for all that hard work, I treated myself to getting my hair done and a little shopping (I needed a new pair of jeans that fit since I lost 10lbs!). My sister watched Kennedy today while I had my hair cut and colored. Many thanks to Kim for only charging me for the cut! Then I decided to go to Old Navy and find a pair of jeans and walked to Borders and got Keith a new Thomas Guide of the NW for work. Not exciting but a big treat for me. If that wasn’t enough, Caryn made me yummy Chinese chicken salad for lunch! The only thing that could have made it better would have been a nice, long nap.

Austin returned to school today-finally. He’s still coughing a lot but at least we can manage it now. As he has gotten older, his asthma attacks have been less frequent but more severe. Please continue to pray for him; he has missed so much school this year. We did get his report card today and it was fantastic despite his frequent absences. He earned all A’s and B’s and even brought some B’s up to A’s this past quarter. We are so proud of his achievements! He is such a wonderful brother-always getting Kennedy water, toys, diapers and helping with her medicine or entertaining her in the hospital. It is easy to forget the silent survivors in this-the siblings. Many times his needs are moved to the way side because hers are so demanding. He spent his birthday and Christmas Break either with friends and family or in the hospital. He has spent a lot of weekends there or at home because we couldn’t go anywhere. He has struggled to eat dinner while his sister is losing hers and been woke up in the night because her bed had to be changed. He’s been asked to retrieve clean clothes, towels, diapers and wipes, medicines and blankets. He has spent late nights in the ER or in the hospital room. He has spent days away from his mommy and dad. He has had to learn lots of new medical terms and explain them to everyone-family, friends and strangers. He has cleaned up puke in the car and held the bowl for his sister. He shaved his head and had to explain to all of his friends why. He has had to worry about his sister dying and wondered if his parents were losing their minds. He’s been taken to baseball and soccer games by his friends and grandparents and hoped his mom and dad could show up. He even missed out on a birthday party because people had colds or coughs and could not be around Kennedy. He’s gotten to know every inch of the 3rd floor at Emanuel and pulled the wagon around and around more times than he can count. He has pushed the wheelchair and stroller to the clinic, carried the diaper bag, been forced to watch princess movies over and over and over, and played with his sister to coax her in to doing her exercises for physical, occupational and speech therapy. Tonight, Austin is my hero. I couldn’t be more proud of my little boy. Thank you to everyone who has taken the extra time to send him cards, encouraged him, spent time with him, taken him fun places or had him overnight to distract him and notice how important he is in all of this. It means the world to all of us.

Kennedy has been doing very well. She is not only tolerating her feeds through her NG tube, but she is eating as much as we can give her. She has even began asking to use the potty instead of her diaper! Yeah for Mommy!!! I would guess that her counts are recovering as she looks great. She is walking but has a very awkward gait so we’ll see what Amy has to say tomorrow. We are looking forward to seeing Kaitlin and dropping in on Rebekah and her mommy. She is scheduled for chemo so we’ll see how that goes. I’ll be updating soon on how things went.

Sometimes being a brother is even better than being a superhero. ~Marc Brown

Love-Hope-Faith
Melenie

Well, we had a whole 6 days out of the hospital before we had to stay again at Hotel Emanuel. We just can’t stay away from the luxury suites, gourmet food, unlimited amenities and pampering staff-okay, I’m sorry for the sarcasm but I wasn’t kidding about the pampering staff! There are definitely benefits to being a frequent flyer.

Kennedy had count checks on Monday and I was not surprised to see that her red counts were very low. Because her appointment had been in the afternoon, it was really too late to get blood so we decided to return Tuesday. Kennedy received a unit of red cells and everything seemed to be cruising along fine. She was feeling so good that we were able to join Grammie, Papa, Bammie Kathie, Uncle Jeff, Auntie Caryn, Emily and Amber for dinner at Szechuan Kitchen for Auntie’s birthday. Kennedy even ate some of their infamous egg drop soup-for those of you who know her well, she will eat this no matter how crappy she feels. After heading back to Auntie’s, to get in to her jammies and say goodnight, we headed home and she crashed out. As I was laying her in bed, she started vomiting blood; not just old blood but bright red with clots in it. This sure woke us up. I was bummed for her but also because I really wanted to sleep in my own bed and read my book. I called Dr. Olson and she thought it would be a good idea to do a direct admit to receive platelets. A direct short-stay admit allowed us to avoid the ER which is very traumatic for Kennedy. After arriving, and being admitted by our favorite RN-Megan, Kennedy continued to throw-up blood and we had no choice but to deal with the resident who was on. Now, I realize that the residents have to use this as a learning experience and are the eyes, ears and hands of the drs. when they can’t be there, but they drive me crazy! Dr. Norwood reminded me recently that he was once a resident-I told him that I would not have liked him either. Every month it is someone new and they always ask the same questions…again, and again, and again. I want to ask them if they have read her chart-I mean, 8 months later and they’re still wanting me to recite the story of how we found out Kennedy had leukemia. Anyway, she had not written the orders for platelets despite the fact that we had been there over an hour! By the time the platelets arrived, were administered, Kennedy received Zofran for vomiting and was hydrated, it was after 2:30am. So much for a short stay. I arrived at h0me in time to see my husband out the door to work.

I was able to sleep a whopping 2 hours before Kennedy started having horrible diarrhea. Now, for those who do not want the graphic details skip the next few sentences. *The first diaper leaked on my bed and was thick, gooey and bloody. The next 4 were also yucky but managed to stay in the diaper. When I stripped my bed, it was actually bright red despite being dark in the diaper.* I called the clinic but they were swamped and after 30 minutes no one had called me back so I called and asked Darlene to get a nurse. Now, on top of dealing with this, I also had to find a way to get Austin back to the doctor for his asthma. He had been having problems for a while and had even seen Dr. Skau on Friday but he did not seem to be improving. I was able to get Kennedy in at 1pm and Austin at 3:30pm. I figured that way either I would be able to take him or Keith or my mom would be off in time to take him.

After arriving at the clinic, we found out that while Kennedy’s platelets were stable, her red counts were shot again. All I could think was, “Oh my God! Didn’t we just go through this?” She fell asleep and I began to worry as I watched her cheeks get more and more flushed. Sure enough, she had a fever. As most of you know, a fever means an automatic 48 hour stay. They probably would have asked us to stay anyway because of the unexplained bleeding. Keith arrived in time to take Austin and after adding another med to his regimine, they returned so I could go home and get a few things to get us through for a couple of days. Kennedy was admitted and there were orders to receive blood and an abdominal x-ray to check for bleeding. Dr. Olson thought it could be that Kennedy had developed vericose veins at the base of her esophagus as the result of her VOD and that the NG tube could have irritated them. Combined with low platelets, this would cause bleeding in her stomach. They started Kennedy on IV antibiotics, started her feed back up and waited. By Thursday she had no more bloody stool or vomit and was onery as could be. She also had no fevers but that night her cultures came back and it revealed that she had a bacterial infection in her PICC line. Now, to go home, she needed to be fever free for 24 hours and have 2 negative blood cultures. This put us going home possibly Saturday. Ugh!

On Friday, Dr. Olson came by to say that she had decided that Kennedy was doing so well that we were going home (good thing because Kennedy was FULL of energy) it was just a matter of whether or not we went home with antibiotics for her PICC or not. After some consideration, she decided to just pull her line. I had mixed feelings about this-I mean all the work it took just to get it in-but decided it probably was our best option. Kennedy was less than thrilled to say the least but when she was ready she wanted it done immediately. Our disappointment in leaving so early was that we had been so happy to have Nurse Raeann. She is usually working in rehabilitation now so it has been awhile-Kennedy loves stories about naughty Roxy (her pug). She also loves stories from Amy (pt) about crazy Lucy. Soon we’ll have stories about our own wild Bailey (Kennedy’s dog at Papa’s).

Before we left, Kennedy had her therapy evaluation with Dr. Shih. After talking with us, he would like to have Kennedy re-evaluated by occupational therapy, read the assessments from physical and speech therapy and look at doing a “boot camp” style outpatient with Kennedy for 2 weeks (really hard 4-5 hours 5 days a week) then back down to 2 hours/week of pt, 1 hour/week of speech and 1 hour/week of occup. Of course, we have insurance to deal with. Speaking of, we just received a letter today saying they will not pay for dietary (what??? for a child who doesn’t eat???) or home health care! It is so absurd!! Many thanks to Gina, April, Al and Kim for giving me information regarding groups that will be able to help us in addition to fundraising. What a pain!!! Maybe when I finish school, I will make a career change working for healthcare/insurance reform. I hear that both Kitzhaber and Kulongowski are interested in this issue-while I won’t give up being conservative, I would be glad to give them input from a personal perspective!

Oh, Kennedy was supposed to have chemo on Friday but as you can imagine it didn’t happen. We have an appointment in the clinic on Tuesday so we’ll see what the plan is. It is not only dependent upon her blood counts but also on how her liver is functioning. Her liver hmm…according to Dr. Barclay she is doing just what we expect her to. Her numbers are still considered high by normal liver function but they are getting closer to normal-they are definitely stable.

Check out our fundraiser page for information regarding the Indoor Garage Sale. If you have anything to donate there is information on how to get donations to the site and there are also flyers available for print to promote the event. As you may have seen, both bracelets and t-shirts will be available soon. The bracelets have been ordered and I think we have finalized everything on the shirts to move them to production. This is so exciting! 🙂 I also know that there are other fundraisers in the works so check back soon.

Austin is doing better-he missed a whole week of school due to asthma-and I think we have it under control. I must say that having both kids to entertain at the hospital was a little much!

I also would like to thank Soft Star Shoes (Check them out in the links section) for their generous donation of shoes for Kennedy! Their elves are absolutely wonderful! They make shoes for all ages and the quality is outstanding. Every pair of shoes is handcrafted of top quality leather. Thanks to our neighbors, the Graves, for their generous donation, thanks to Kim and Roxanne and so many others at Arthur Academy for the Christmas gifts and food, thanks to Oregon Catholic Press for their generous monetary donation, thanks to all our close neighbors for their prayers and love and concern, thanks to Peter and Elaine for the donation of “Lunch” and “Dinner,” thanks to all who have made donations through her bank account and this website and for all of those leaving caring, loving messages in her guestbook and all who pray, love and adore our little baby. You are all so wonderful and we could never do this without you. Thanks to her nurses who are so devoted to their jobs and us as a family. Thanks to Becky for support and this website-you are the best. Thanks to everyone with advice and help in dealing with insurance. Thank you to Kristy Parrish and her stamping friends for the beautiful hand-made cards that have come for all of us from all over the US. Thank you to our family and friends for doing all that you do. Thank you, thank you, thank you to all of you; you all make this journey easier to walk. We are so blessed and ultimately we thank the good Lord for everyday.

“In prosperity our friends know us; in adversity we know our friends.”
John Churton Collins

Love-Hope-Faith
Melenie