Yesterday was our “scheduled” clinic visit and Kennedy gave us another stellar performance getting her port accessed. Austin and I couldn’t believe it! She was nervous but sat right up and didn’t cry or flinch! It was encouraging to see her so brave. Kennedy’s legs and feet were absolutely covered in bruises, and two were growing at a steady rate over the weekend, so despite her platelets being at 21 (they normally don’t transfuse over 20) she was given platelets for her symptoms. Dr. Norwood thought this was necessary because of her history of internal bleeding both in her stomach and kidneys/bladder. Her red cell count (hemoglobin was 7.8) was also shot but he decided to use it as a gauge to see if her counts will recover on their own. This means another visit on Thursday for counts and most likely blood. Her white count also took a dive and her ANC went from 970 on Friday to 300 yesterday. A quick reminder on what normal range is: WBC 4.5-17, RBC 3.8-5.4 (hemoglobin 11-14, hematocrit 32-42, platelets 140-440, ANC 1500-11,000. Because Kennedy just had platelets a week ago and red cells a week and a half ago, there is some concern that she is transfusion dependent right now. That is why Dr. Norwood did not transfuse red cells despite her being in the critically low range. The hope is that she will begin producing some healthy cells on her own and we are using the RBC as an indicator. He did stress though that if she becomes lethargic to call immediately and if she has even the slightest fever to call because her counts have bottomed out. The Drs. believe that the harsh treatment schedule and PEG injections just wiped out her bone marrow which is what produces blood. He did stress that if her WBC and platelets are not recovering by Thursday we will NOT be admitted for treatment on Monday. I don’t know that this will delay her a week but at least a few days for sure.

Well, three months today Kennedy was diagnosed with leukemia. Wow! Feels like at least 6 months, if not more. Her medical expenses (clinic and hospitalizations) for the last 3 months, not including pharmacy charges, has topped $150,000. I am so thankful for OHP and despite its shortcomings, has saved us from certain financial devastation-especially because we have 8 more months of intensive treatment left and 2 years of maintenance. In some ways I am thankful too that this is not yet covered by our new insurance because they have a lifetime max and I would not want to be cutting into that if she ends up relapsing or needing a transplant.

On another note, Keith is really enjoying his new job. I don’t think he likes wearing long pants on a hot day (uniforms) but he is doing new things (like driving equipment) and earning overtime which helps. We were pleasantly surprised by his first check and I enjoy not washing his greasy clothes! Getting up at 3:30 am is hard but we’re making sure we have some time together on the weekends and try to at least have daily updates with each other. Last night we watched Jeff and Caryn’s girls so they could have a night out for their anniversary and we had a blast playing with the kids. I’m always so amazed at how much Amber and Emmy love Uncle Keith because he’s not the warmest, fuzziest guy. He sure loves the girls though and Amber was content to snuggle on his lap and watch American Chopper. It was very cute.

Austin is doing well and told me yesterday that although he doesn’t want to be away from me and Kennedy, he is looking forward to going back to school and playing with his friends. He will be starting soccer practice ASAP and is ecstatic about that. He has really missed his friends this summer but it has been reassuring to him to be with his sister during this difficult time. Keith and I are working out a schedule (alternating weekends) to have some one on one time with Austin. This last weekend Austin and I did some shopping (soccer stuff) and had lunch and played at Bullwinkle’s in Wilsonville. I barely beat him at minature golf (despite his huge lead at the 9th hole) and he kicked my fanny at video games. We spent Sunday weeding the yard and trimming plants-he was a really great helper and I don’t think Grammie and I could have done it without him. Papa was visiting Grandmama Marty, Uncle Bill, Aunt Jen and the kids but he has done more than his share in the garden-I guess it was our turn. This weekend Papa, Daddy and Austin will be heading to the rodeo to watch Ross Coleman, Justin McBride and their friends ride to raise money for another local rodeo cowboy, Jack Peterkin (www.jackpeterkin.com) who is fighting testicular cancer without health insurance. A great cause I must say!

Anyway, I’m holding up. Some days are better than others for sure. I will begin working on my research project once Austin returns to school in September. I’m anxious to be doing something of my own again. I’m also embarking on a project and need lots of prayer to make decisions regarding it. Without giving any details, just pray for direction and timing. It would allow me to be home but changes the timing on some other things. As far as other prayer-continued prayer for us and healing for Kennedy.

Love and blessings,
Melenie

I posted an updated entry earlier but for some unknown reason it re-posted the one from Monday. Hmm…not sure but I’ll try it again. We went to the clinic today to have more blood drawn because Kennedy had more new bruises despite being given platelets on Monday. She was also anemic on Monday so I thought it would be a good idea to have that checked. Well, her platelets were low (50) and her hemoglobin RBC was 9 but her ANC was 970! The nurses believe that her numbers will continue to rise but they will take another CBC on Monday when she has her appointment. It was a little bit of an inconvenience driving in to Portland today but it almost guarantees no ER visits this weekend and that I can live with. On a very good note, Kennedy did absolutely awesome having her port accessed today! We were so happy! Nurse Suzi, who accessed her on Monday, was there and Kennedy sat right up-no flinching, screaming or crying! We were all so proud of her and she received a special certificate for being a big, brave patient. Boy, was she proud of that!

On a down turn, Kennedy will not be having a rest week between Consolidation and Interim Maintenance 1. The Drs. and the Children’s Oncology Group (COG), the group overseeing her research protocol (and most protocols) have decided that because of her slow response and high risk status, and because she has already had one treatment delay, they have decided that if her counts have recovered then she will be inpatient on August 15th. She was scheduled for the 22nd but it looks like her numbers will be fine (she must have an ANC of 750 and platelets at 75). They will also delay her bone marrow aspiration until the 15th so they only have to sedate her once. Please pray for all of us during this time because this is the phase of treatment that will be hardest for Kennedy. Kennedy will be receiving high doses of Methotrexate via IV over 24 hours which is known to cause horrible (cankerous) mouth sores in her mouth and throughout her digestive and intestinal tract. The nurses will be giving her medicine to counter the effect and even using special mouth wash but Kennedy has already lost 15 percent of her body weight and there is some concern that she will not want to eat (obviously) so an NG tube may have to be placed to provide enough calories and nutrition. This high dosage requires 3-5 days in the hospital (with no complications) and a Leucovorin rescue on day 3. Most children suffer from liver and kidney complications so it is important that her body processes the chemo effectively. She will also need to take an oral med which could further complicate this. Please check the above schedule for planned hospitalizations-I know that I would appreciate calls and visitors because being in the hospital so much gives me cabin fever. This is very hard on our family both emotionally and financially so please pray for: Keith and I (wisdom and strength), Kennedy (healing, peace and strength) and especially Austin (he will be trying to finish his summer and start school and it is very upsetting for him to have our family separated so frequently).

On a good note, our doctor’s office was able to get OHP to pay for 60 Zofran every 30 days rather than the 9 every 18 days that they had originally approved. This to the tune of almost $1500 per month! What a blessing this is!

Also, we are so excited about the upcoming Bike Show and Dinner Dance planned for Saturday, August 27th. Shawn attended the Spaghetti feed put on by the Moose Lodge and wanted to help. This is such a tremendous gift to us and we look forward to seeing so many there! We are continually blessed by so many who show so much love our sweet baby girl-even when they don’t know us! For those who love motorcycles and music this is sure to be a great event!

Please pray for the following families:

Warren-Burkitt’s Lymphoma and is currently hospitalized
Joshua-Ewing’s Sarcoma
Maggie-MLL
Kaitlin-ALL
Emily-ALL
Oliver-AML

Love and many blessings,
Melenie

I know that everyone has been anxiously awaiting information about the big fundraiser from Saturday so here is the news! The count on Saturday was $4105!!!! Plants have continued to be sold and money donated so since then there has been at least another $660 with more to come! Thank you to everyone (the Schermies, the Platts, the Strutz, and so many more!) who helped make this such a success. Again we realize the blessings that we have received and are amazed not only by how many people come out to help but also how many donate to help our baby! The incredible goodness of people just warms my heart. My sister and dad worked so hard collecting plants, selling plants, washing cars and drumming up publicity for Kennedy’s fundraiser. Thank you again and my prayers for healing of the many sunburns and sore muscles (you know who you are 🙂

At the end of a wonderful day, we were blessed again by the Heisler family (Uncle Mark, Aunt Judy, Chelsea and Joseph) who watched our babies so we could have our first date night in 5 months. The kids had a blast and Kennedy was asleep before Keith even started the car. Keith and I actually went to the theater to see a movie (Wedding Crashers-great movie by the way!) and have a dinner in which we could have adult conversation without reminding anyone to take their silverware out of the water or climb out from under the table. It was such a gift to us as a couple and we are very grateful.

The weekend only got better! On Sunday, my sister and I went to lunch (at the best sandwich shop in Gresham-The Truffle Hunter on Powell) and did some shopping. It was very relaxing and just what I needed after two weeks of intensive chemo for Kennedy. I’ve felt so emotionally spent lately and was in need of some recharging. We had so much fun and are planning our next get together in a few weeks.

It is true-we are done with the Ara-C. Only today and next Monday and then we will be done with the Consolidation portion of treatment. Today was rough though. It started off bad when Kennedy insisted that Nurse Sam access her port and she was off today. Kennedy became hysterical and would not calm down. This only set the tone for the day and once she was mad, no one was safe. She began to yell at me and told me that the snacks I had were stupid because there was no popcorn or chicken broth. Who would have guessed that was what she would want??? I was kind enough to let her wear her new Barbie ballet dress but failed to pack extra clothes so when the Vincristine hit and the dress began to bug her she had something else to scream about! I thought I was going to lose my mind! I reminded Dr. Olson that she had said that things would be better after Induction was over and they were only getting worse! Both her and the nurse commented that Kennedy (as a high-risk patient and now as a slow responder) had the most aggressive and difficult treatment protocol there is for leukemia. She does have reason to be upset-she feels like crap! I just don’t know how we’ll make it through the intensive period that lasts into April. Please pray for strength and peace-we need it! Dr. Olson again talked about getting Kennedy on an appetite stimulant so we will be starting that next week some time. She also checked Kennedy’s reflexes-she has NONE! And hasn’t for over a month! So, Dr. Olson checked the strength in her hands, arms, feet and legs. She wants to monitor this closely for signs that she needs physical therapy from the Vincristine. The worse part is, she has a lot of doses of Vincristine left before long term maintenance. I have noticed that she has begun to walk differently-a little bit of the “foot slapping” that is common. One more thing to add to the list of worries. So, after all of that we went to day treatment for platelets (she was at 18 and normal is over 140), her monthly antibiotic and her PEG injections (one in each thigh). They started her antibiotic and when it was done it was time for her PEG. Then the hysteria started again! She had to be held down and because her platelets were low it took a while before they could get by with just a bandage on the spot. My mom showed up with lunch right after (which had been difficult in and of itself!) and Kennedy was calmer. Then, just when we thought the worst was over, Kennedy’s stomach began getting upset. She went through every pair of undies I had brought. While we were in the bathroom getting cleaned up, I went to ask a nurse for something to put on Kennedy, she pulled off the bandages on her legs and Austin came tearing out of the bathroom because Kennedy was bleeding all over! She had blood on her legs, arms, hands and floor. Once that was under control, she was cleaned up and again comfortable we moved on to getting the platelets over with. We were able to leave about 4:30-just in time to hit rush hour traffic. Luckily, we don’t have to do this again soon. Her next dose of chemo (more Vincristine) isn’t until the 8th although she does get another bone marrow aspiration on that day. We will also be watching her red cells. Although she received a transfusion on Thursday, her counts are again as low as they were Monday making her anemic again this week. The staff expects her to need another transfusion later this week or by Monday when we return. Her treatment is just devouring the red cells making it hard to keep up. So that’s the latest scoop. I keep thinking at some point there will be no news to report and my journal entries will be smaller but that hasn’t happened yet. Could be because of all that is going on or could be that I’m just long winded! 🙂 Anyway, my good thing that happened today? I made it to the top of the pasture on a walk (by myself 🙂 in 20 minutes. For those who have seen this hill-that is fab!! Must have been all that pent up anger and frustration that pushed me along. It was just so awesome to accomplish something successful today.

Prayer:

Kennedy-side effects from chemo, healing, strength, and peace

Mel-PEACE that passes all understanding, sleep!, and to lean on our Lord rather than expect someone to fill the emptiness (ok, and healing for this terrible sunburn that is driving me nuts!

Keith-work, peace and strength

Austin-peace and understanding

Grammie and Papa-rest, peace and strength, and healing for sore muscles and sunburn

Continued prayer for other children and their families fighting cancer:

Warren-Burkitt’s Lymphoma
Joshua-Ewing’s Sarcoma
Maggie-MLL (a rare combination of AML and ALL)
Oliver-AML
Kaitlin-ALL
Emily-ALL

Love and thanks,
Melenie

The last dose of Ara-C went in yesterday! Ok, the last dose for a few months anyway. It became a long day when Kennedy needed a red blood transfusion. She received the blood from her own “blood bank”-a donated unit of blood just for her and we want to thank those who have been led to make direct donations to her. It truly is the gift of life for our little girl! Her hematocrit was 17.5 (normal is 32-42)-this is the percentage of red blood cells (oxygen moving cells) in her blood. Her hemoglobin was only 5.8 (normal is 11-14)-this is the protein in her red blood cells that carries oxygen and returns the carbon dioxide. Without a healthy amount of red blood cells doing their job, she suffers from fatigue, poor concentration, weakness, insomnia, and headache. Her platelets are low too (82-normal is 140 to 440) but not yet low enough to require a transfusion, we are guessing sometime next week. Her white blood cells (those for fighting infection) were at 0.4-normal range is 4.5-17 and her ANC is a whopping 260 making her neutropenic. Her ANC should be over 1500 and normal is up to 11,000. So while she will be at the fundraiser, we are asking that people do not get close to her with a runny nose, cough, etc. and everyone must wash their hands as much as possible. We will be bringing Purell with us and her oncs think that because it is outside, it will be fine.

Anyway, about yesterday….she did well but when her transfusion was almost finished, she began vomiting. Of course she managed to stay clean but covered me in two bags of popcorn. Yum! We had to unhook her, clean up, give more Zofran (for nausea) and rehook her. We left the hospital about 5 pm and Kennedy cried all the way home. It started because she lost her toe ring but quickly developed into her sadness at having cancer. She told me that she wished she was Bubba’s age so she wouldn’t have cancer anymore. She just sobbed and sobbed about how much she hates feeling sick, getting pokes, spending days in the hospital, missing out on summer, losing her hair, etc. It was heartbreaking and I just wanted to take it all away from her. I told Keith it was like hearing a 12 year old talk about having cancer-not a 4 year old. She has become so wise beyond her years and I fear that her innocence is lost to this dragon. Please pray for her-she really struggles. On days when we are home or away from the hospital-she loves life and enjoys playing but going there is so emotional for her and she is fully aware that other kids do not have to go through this. Everyone who has spent a considerable amount of time with Kennedy through this is amazed at her new found ability to communicate and understand. She has begun using huge words (and not just med names and med terms) but words like suggestion and reality and difficult and she can not only use them correctly but can articulate exactly what they mean! It is so surprising to me! Her pronunciation is really improved and she gives the names of the drugs she is allergic to to anyone who needs them (penicillin, amoxicillin, and fentanyl) and they understand her! Please pray for her 1) for strength, protection and the peace that passes all understanding, 2) the chemo and radiation will not affect her intellectual abilities and gained knowledge, and 3) that God will protect her heart and not allow bitterness or resentment to gain a foothold here.

As for the fundraiser tomorrow—it is going to be AWESOME! The plants donated will be incredible and there will be TONS of them! Not just flowers and small bedding plants but TREES!! So if you have been waiting for a good deal to add high quality trees to your yard-NOW IS THE TIME!! Please join us!

We love you all and thank you for everything-especially continued prayer!

Melenie

*quick note*
Kennedy came up to me this afternoon and said, “I don’t know how my hair got shorter” but when I looked at her I knew! I wondered why she had been so quiet!!! She had taken scissors and hid so she could CUT the hair she has left 🙂 Some pieces are 4 inches, and some are only about 1 inch. She called her auntie and grandma to tell them all about it and man, was she proud! They laughed and thought it was great. Grammie made me promise not to trim it up until she saw it! So, tonight we will be helping her haircut along so it doesn’t look quite so “choppy.” Stay tuned for some new pictures real soon! 🙂 And for those who are coming tomorrow-she would love for you all to comment on her new do!

Kennedy’s access went much better yesterday. When we arrived, Shirley came in to the room and Kennedy immediately asked for Sam. She had not forgotten that Sam promised to access her port. Sam had phone duty this week but took time to help Kennedy out anyway. It went so well-I couldn’t believe it. Kennedy flinched but didn’t cry at all!!!! She said it felt like someone just “pressing” on her. What a difference it makes when they check the position of her port first! Her counts were okay: ANC was 710 (low but not yet “neutropenic”-normal is over 1500), her platelets were still in the normal range and while her RBC was low (and one aspect critically low) they did not feel she needed a transufusion yet but they do expect she will by Thursday. She looks very pale to me (even her lips are almost the same color as her skin) they have their guidelines to follow-I just know that I must trust them to make good choices. She had chemo today and it went off without a hitch-so goes the plan for tomorrow too!

After chemo tomorrow, the kids and I are meeting Auntie Caryn and the kids at the park for a picnic. That ought to be fun. I’ll just bring lots of Purell-seems like we carry a lot of it with us now anyway!

Pretty quick tonight-got to get those kiddos to bed! Kennedy missed her nap today and has been exceptionally whiney!

See you at the carwash/plant sale! It is going to be a blast and the weather couldn’t be more perfect!

Melenie

I am happy to report that Kennedy’s week went much better. After Sam (the nurse) accessed her on Tuesday she was much more relaxed. She told us that Sam is the best because she couldn’t even feel it. Sam assured us that she would be there Monday to do Kennedy’s access. What a relief! Without her line in, Kennedy was able to swim in the pool with her Bubba and take a nice, long “soaky” tubby. I bought her Aveeno oatmeal bath because her skin is dry and irritated. This was soothing (no scrubbing or soaps necessary) and she enjoyed “hiding” her toys in the creamy water. She felt refreshed when she got out and didn’t even protest getting her whisps (hair) brushed.

Because her counts are good (ANC 1220) we went to Auntie’s and played today. She had the best time playing with her bestest bud, Emmy. Austin and I enjoyed teaching Amber new signs. She has “auntie,” “more,” and “all done” down pat so we added “water” and “milk” to her repitore. She’s not quite sure what we are doing but she’s one smart cookie and I expect that she’ll have it down in no time. Emmy stayed the night tonight and the girls had a blast tearing up the playroom. I told Keith that this has to be the first project in the morning! They had the Barbies, kitchen toys, babies, dressup and legos EVERYWHERE! It’s just so good to see them having so much fun and to see Kennedy playing as if nothing is wrong that I wouldn’t mind cleaning up hundreds of toys! They miss each other so much and treasure the times they can be together. We took Emmy to feed the goats carrots and even went up to the pond to check out the three ducks living there. Peter was cutting the grass/hay in the field so we sat and watched him work for a while as the sun went down. A perfect ending to a perfect day. Tomorrow, Caryn and Amber are joining Mom and I as we head out for the farmer’s markets in Canby and Oregon City.

Keith is doing very well at his new job and really enjoying it. While I think he misses the freedom of working for himself, and the fun of driving a dumptruck, he likes learning new things and knows without a doubt that this is the best thing for us as a family.

We are all settling back in to the routine of having Papa at home. The kids missed him terribly and are so glad he is living here with us and Grammie again. I know that working in the garden is relaxing for him and I think being able to come home to the country everynight is comforting for all of us. Their help with the kids and house is priceless; not to mention the tremendous benefits the kids get from sharing a house with another generation. We have some plans in the works that may expand this and I am excited about it.

Please continue to pray for Kennedy. Next week brings four more days of chemo. Thank you to everyone that has helped contribute with time, energy and or money to Kennedy’s fundraisers. They have been wonderful and offer a lot of support to our family. OHP has been difficult when it comes to comfort medicines such as medicine for pain, the EMLA cream to numb her port before accessing and now her nausea medicine. They will only pay for 9 pills for 18 days, meaning if she has to use those 9 pills over the course of a few days (they are to be given every 4-6 hours on chemo days) she can’t have anymore until 18 days from when her prescription was filled. Today I paid for an additional 11 pills to the tune of $244!!!!! With 4 days of chemo next week and another week of oral chemo meds that cause her to feel sick, I knew 9 pills would never last. Without Kennedy’s fund, other bills would have to go unpaid because I could not have Kennedy go without-especially when she is already having a problem with maintaining her weight! Thank you, thank you, thank you.

My positive thought for the day??? Today Kennedy had a fun day playing and felt incredible and we saw the most spectacular sunset over the pasture as we stood next to the pond in the quiet country. Doesn’t get much better, huh?

We hope to see you all at the carwash/plant sale next Saturday. FIVE NURSERIES have made donations of plants, flowers and trees so it will be awesome! All of the proceeds go to Kennedy’s fund to help cover her unpaid medical expenses.

Thank you everyone for all of your love and support,
Melenie

Please pray for my friend Becky as she travels the first week of August to pick up her newly adopted son, Landy, from Haiti! Congratulations, Becky and family and we wish you all the best as you begin your new journey! We love you guys!

I’m so glad that Kennedy was able to enjoy one good week-free of chemo and oral meds. Yesterday was probably one of her worst days so far. After bustling like crazy to get to day treatment by 8:00 am, they told me my appointment wasn’t until Tuesday! I said, “WHAT???” Both Dr. Olson and the clinic confirmed that if she wasn’t coming back on Thursday, then she was to be in day treatment on Monday. They called the clinic and managed to work it out. From there, it only got worse. All last week Kennedy was telling everyone how she was getting much better at having her port accessed only to have it go horribly wrong yesterday. Rather than have Nellie or Libby do it, they had another nurse who had problems. She put the needle in (traumatic in and of itself), it was wrong so she pulled it out and did it again, it too was wrong so out it came again and back in. By this time Kennedy is hysterical and screaming and I’m crying and feeling very sick. One nurse went to get Libby and I handed Kennedy off to the other nurse so I wouldn’t be sick on her. Libby came in and adjusted the port to make it work without having to poke Kennedy but the damage was already done. They hooked her up to her fluids and she began to calm down. She suggested we play Chutes & Ladders, which was fine, but I couldn’t sit on the floor. Rather than play on the couch, Kennedy flew into another rage; only this one lasted 45 minutes! To make matters worse, we were not in a private room but in the bigger “rec” room with other families. Finally she agreed to play it on the couch if she could sit in my lap. On top of her being mad, I had to coerce her to drink, even though she was getting fluids, because she was too dehydrated to begin her chemo. She was trying to hold on to what little control she had and dug in that she would not drink what we were offering nor go to the bathroom so they could test her urine for hydration! AAAAHHHH! About 1:30 she was finally hydrated enough to hook up only by now she had had one more raging temper tantrum because I forgot the Handi-Snacks cheese and crackers she likes! I ended up buying 12 pieces of bacon for $6.00 so she would eat something. They turned on her chemo and she begins to play dress-up with a little girl waiting to have her bone marrow tested to see if she can donate to her sister, when ten minutes into it I start noticing that there is blood creeping up her line. I knew this couldn’t be good and got a nurse who unhooked her and tried to flush the line. She was able to flush and get a return (blood back into the syringe) but when she flushed again it would not budge. They kept trying but the fluid began shooting out of the other hub. Apparently a small clot was in her port and they suctioned it into the needle. I thought, “What else could go wrong today???” They had to add TPA(?) to dissolve the clot and we had 45 minutes to go get lunch since she would be unhooked. Kennedy picked Cheetos and water…mmmm, nutricious. She was hooked up and everything appeared to be fine. After the chemo was administered, she still had to have at least 3 hours of more pushed fluids through her IV and had to use the bathroom. Here we go again! She drank all of her water and we were able to leave at 6:45 pm. What a long day! Normally they would leave her tubing to her port in for the 4 days she gets chemo but because it clearly was not in their correctly (hence all the problems) they thought it would be best to remove it. Again, Kennedy flew into a rage and began kicking and screaming that “everytime they want to hurt her!!” and “why are they always hurting her???” They removed it and it was a mess from being poked so much earlier. She was exhausted and after hitting a Taco Bell drive through, she napped all the way home. The only thing she had to say was that she wanted someone else’s child to be sick instead of her and she was NEVER going back to the hospital again…EVER!!!!

Everyone (the Drs., other parents, etc.) told us that the port was better, kids get used to it and it is easier after the first 4-6 weeks; I’m not so sure about that! Today we had to go back to the clinic so she could be accessed and get her Ara-C. She started screaming the minute she realized what was going to happen. And screamed, and screamed, and screamed! It took two nurses just to hold her down. Once it was in it was fine but the anxiety was horrific! Apparently the port has “moved” and is now tilted back. Sam (the nurse) just held it with her fingers and accessed it with no problem. The nurse in day treatment didn’t check its position, she just put the needle in. No wonder there was a problem! She stayed mad while they were taping it but was no longer screaming and would not talk to Dr. Norwood when we saw him in the hall. I would have to agree with Kennedy, I wish someone else’s kid was sick…not mine and I don’t ever want to go to the hospital again!

Oh, and on top of all this…OHP does not think that Kennedy needs the Lidocaine to numb her port area before it is accessed and is refusing to pay for it! Are they kidding me????? How insensitive! Thankfully, Kennedy’s fund is able to cover these kinds of expenses.

Ok, now that I’ve had my vent. I have decided that I must find one good thing everyday to keep my sanity. Here it is: Today the sun is shining and we are not inpatient.

Please pray for Kennedy. It worries me that she does not think any of this is worth it. I love her fiesty spirit and I pray for strength and determination for her. And please pray for me-I am so angry right now that it is overflowing into my life. Please pray for the peace that passes all understanding.

Melenie

Kennedy had a wonderful time at the Spaghetti Feed and Raffle last night! She was the social butterfly we all know and love. So many people we love showed up to support our baby (Nacho, Prof. Collins and her parents, Scott and Teresa, Uncle Bob, Auntie Sue and girls, Josh and his family, Ashley and Troy, Auntie Caryn and Uncle Jeff, the Bentley family, the Wilson family, the Goods, the Manley and Morgan families, Grandpa Sam and Grandma Bev, the Reeves, April and her mom, Jason, Liz and baby Jak, and so, so many more!); even people who attended church or worked with others who know and love us and of course, members of the Moose Lodge. Everyone had a wonderful time, ate great spaghetti and most took home fun prizes. Uncle Jeff was the winner of the 50/50 raffle and took home a whopping $256.00!!! The lodge said that was the biggest 50/50 pot they have ever had ($512). The night was a huge success and an amazing $1969.00 was raised to help our family. Thank you to everyone for taking the time out of your busy weekend to share with us and support us during this difficult time. Somehow, thank you just isn’t enough. Of course, a HUGE thank you to the Moose Lodge for all the work they did in putting this together and Safeway for donating ALL of the food! The only member who knew us was Dolly Morgan, mom to my dear friend Tammy, and yet everyone was more than happy to help us by donating their time and energy to this marvelous dinner. Thank you, thank you, thank you!

Kennedy still feels great! She is eating and playing and acting just like the little girl we know and love so much. It just breaks my heart that tomorrow she will have to begin her chemo regimine again. Yes, it’s true, tomorrow she will start another 4 days of chemo with Monday being the longest day (8am-6pm). Austin will be spending the day with Holly, Heather, Sammi, Chelsea and Joseph. He is totally ecstatic and can’t wait! Kennedy is bummed but she hopes she will have the chance to play with Amy. Please pray for us as one of the drugs, cyclophosphamide, is really nasty. A good place to find out about the drugs Kennedy is receiving (and other common leukemia and treatment terms) is at www.all-kids.org and then click on FAQ. We do not expect this week to go well.

Through a series of events, Keith will be starting his new job a week early. He is less than thrilled to give up driving a dump truck but is also looking forward to working with a variety of construction equipment and learning new things. Pray for him during this transition.

That’s about it for now! Again, thank you everyone for your support-it means worlds to us.

We love you all,
Melenie

Kennedy is running and eating everything in sight. You would think that she had been living on a deserted island somewhere for the past 8 1/2 weeks! It is good to see her appetite coming back but I am worried about her not having any chemotherapy this week. She is thrilled that she gets another week without any “drinking medicine” and is happy to be a little girl enjoying summer. We have just been laying low this week but decided to go and have Austin and Kennedy’s pictures taken with their cousins while Jay is in town. The last time we had their pictures taken, Kennedy was a year and a half old and Caryn didn’t have Amber yet. I do believe it is time to update them. I was worried that Kennedy wouldn’t want to because she has become very aware of her thin hair but Amber bonked her eye today and Austin hit his head so they will be a real wild bunch. Kennedy is really noticing that her hair is thin and the other night when we went to my sister’s for dinner, she wanted to wear a hooded towel over her hair. I let her bring it, which horrified Austin, but she only wore it for a few minutes then ran to play with her best pal and cousin, Emily. It breaks my heart that she worries about it at all.

We are all looking forward to the spaghetti feed and raffle on Saturday. Kennedy will be attending although we are asking people to wash their hands and not expect to hold her. She is very excited and so happy that they will be serving her favorite food. Every morning she asks me how many more days until spaghetti!

Not a whole lot going on. We’re pretty much enjoying Kennedy’s good days and not worrying about the chemo days to come.

Oh, I do have to share one thing. Last night I was trying to give Kennedy some advice about what she was doing, and she looked at me and said, “I know you are trying to help, but it really isn’t working for me!” To add insult to injury-when I was telling my mom tonight over dinner, Austin piped in that it sounded just like me!!!! Imagine that! Keith does tell me all the time that her attitude, words and gesture are identical to mine but I always try and deny it. Like mother, like daughter.

Continued prayer for:

-Healing for Kennedy and continued remission
-Mild to no side effects from Chemo
-Rise in ANC for Kennedy
-Austin’s attitude (he’s really having a hard time right now)
-Keith’s new job
-Melenie’s attitude, peace, strength and patience
-Rest for Grammie and Papa (who do so much to help with the kids)
-Good day at the Spaghetti Feed

-Warren Mattox (Burkitt’s Lymphoma)
-Joshua (Ewing’s Sarcoma)
-Oliver (AML)
-Kaitlin (ALL)
-Maggie (MLL)-recent bone marrow transplant

Melenie

We were able to come home on Sunday. We had to hang around for her last antibiotic dose and a final check on her vitals. Her temperature was at 99.5 so we hung around another hour but then it was back to normal. Her ANC was only 300 and Dr. Olson thought there was only a slim chance it would come up by today. She was right this time; Kennedy’s ANC was still 300. This meant no chemo until at least Monday. She must be at 750 or it is a no go. On one hand it was a bummer because it meant nothing fighting this week, on the other she will have a chance to get her appetite back. Dr. Olson was concerned by Kennedy’s weight loss, too. She has lost 14% of her body weight. Dr. Olson had hoped that she would gain it back but she has stayed under 40 lb. for more than 6 weeks. For the next two weeks we will be trying some dietary changes to help increase her weight. After that Kennedy will be placed on a study comparing two well used and well researched appetite stimulants to find out which works best. I expressed to Dr. Olson that I want to get this under control so that we do not have to use an NG tube and supplements. Luckily, she agreed. She felt it was better to treat it now rather than later when the treatment is more invasive. So Monday we return to Day Treatment with a long day planned.

On a good note, Kennedy’s chemo pal, Amy, met us at the clinic and spent a couple of hours playing with the kids. She is so creative and brought pipe cleaners, paints and a very fun book with everything to make flower petal fairies. Kennedy really loved this. They also used face paint to paint Kennedy’s face, Austin’s leg and Amy’s foot. Kennedy really wanted to bring this activity home but I told her this was more fun for her and Amy to do together. The truth is I just didn’t want to have face paints at home all over the place 🙂 I’m so thrilled that Amy is so creative. The kids just loved her and couldn’t stop talking about how much fun they had. Kennedy is looking forward to playing with Amy again soon.

Last night Kennedy’s Make A Wish granters (or fairy godmothers as she called them) were here to talk to Kennedy about her wish. We were surprised at how much they do for us. They will have a party for Kennedy before she leaves. She will get to ride in a limo to the airport and be treated like a princess throughout the entire week. ALL of our expenses will be paid, including snacks and spending money. When she returns to Portland, they will meet us at the airport. Kennedy is so excited. We are trying to go the week of her birthday in October. They will also set up a lunch or dinner with Sleeping Beauty (Kennedy’s most favorite princess). As a back-up wish, she has said she would like to meet Gretchen Wilson. I believe the Disneyland trip will be the wish she has granted. Hopefully, if Gretchen Wilson returns to Portland, she will have the opportunity to have her 2nd wish granted.

Finally, for those who haven’t heard, Keith will be starting a new job on July 25. He will be going to work as a driver picking up and delivering construction equipment for Sunbelt Rentals in Portland. While he loves driving a dump truck it is mostly seasonal and it has no benefits. He looked into driving for a larger company in Portland/Salem but the cut in pay was just too much. While he will take a slight cut during the summer months at his new job, he will make up for it in the winter and will not be gone overnight because he has to drive a container truck. There are full benefits and sick/vacation pay. The insurance plan states a 12 month wait on pre-existing conditions but we may be able to get that waived with a certificate of coverage from CareOregon (OHP). It will be the best option for our family at this time and he is looking forward to being there.

Thank you for your continued prayers and we hope to see everyone at the Spaghetti Feed!!

Melenie