Courage for Kennedy – Journal


July 29, 2005

Category: Fundraisers,Treatment – Melenie 12:59 am

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!

July 26, 2005

Category: Treatment – Melenie 8:55 pm

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

July 23, 2005

Category: Fundraisers,Treatment – Melenie 1:13 am

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!

July 19, 2005

Category: Treatment – Melenie 5:48 pm

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

July 17, 2005

Category: Fundraisers – Melenie 7:48 pm

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

July 15, 2005

Category: Treatment – Melenie 12:29 am

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

July 12, 2005

Category: Treatment – Melenie 5:04 pm

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

July 10, 2005

Category: Treatment – Melenie 2:43 am

We just love the nurses at Emanuel so much we can’t possibly stay away! 🙂 Ok, we do love them but we wish we could visit with them outside the hospital. Kennedy couldn’t make it until Tuesday and now we’re not sure if her counts will be good enough for her Ara-C. She had been running a low grade fever (99-100) the days following her chemo but we expected her ANC to continue to rise. By Friday evening her fever was over the magic 101 (101.3) and Dr. Olson had us return to the ER (we were just there on the 4th) for a CBC (complete blood count), blood culture and a dose of antibiotics. If her ANC was over 750, we would be able to go home. It was only at 200 and her WBC was at 0.8 so we were admitted. Not only admitted, but sent to a “clean” room with the HEPA filter, door monitors, etc. Her temperature has been between normal and 100, and she has been playing but it is still a mandatory 48 hour stay. When Dr. Olson came in today, she said as long as there were no spikes or bacteria growth in her cultures, we could go home sometime tomorrow. We’re praying that things go well. On a good note she has had both of her favorite nurses, Megan and Melissa. Today she played playdough and painted nails with Melissa. When Megan came on she brought Kennedy’s picture of Gretchen Wilson and they sang both Redneck Woman and Homewrecker. Megan brought her camera to take a picture but Kennedy would barely sing, let alone stand and perform; maybe next time. Daddy and Austin were here all day and the kids had a lot of fun playing. We decided to order pizza and while Kennedy didn’t want any, the rest of us scarfed it up. Austin especially loved the breadsticks. Tonight Auntie Caryn came to stay the night with us. We had a great time watching a movie, eating pizza and making “tooting” sounds with our mouth, tummy, legs and straws (long story!!!). The kids, Caryn and I loved the potty humor but I think Keith was embarressed by our rowdiness. This was the first time I had showed anyone the straw trick besides the kids and he did not know what to think. It was a hit with Caryn, and Megan and Caryn think I should go on David Letterman’s Stupid Human Tricks. After all of that, Kennedy crashed!

Ok, gotta run. I am totally exhausted tonight.

Sweet dreams,
Mel

July 6, 2005

Category: Treatment – Melenie 4:37 pm

Kennedy met her new Chemo Pal, Amy, yesterday. I was really worried that it would take a few visits for her to warm up but she liked her instantly. She was drawn in by the story books and within a few minutes was actually talking to her. We requested that she not wear a badge, since Kennedy doesn’t trust anyone with a badge anymore, and I’m sure this helped. She had a great time playing games, looking at books, doing puzzles and playing with the Madeline stickers. It was a nice change from her usual mood the morning of procedures. Typically the day starts off bad because she has to go without breakfast and within a few minutes of arriving she has to have her port accessed. After what happened at the ER I was worried it would not go well but she did better with Nellie and Libby, of course she knows them though. I was just so delighted that she enjoyed playing with Amy so much. Amy told us that she is a 6th grade teacher in the Beaverton school district. She was a cheerleader and dancer, Kennedy was thrilled to hear this, and went to school at Linfield in McMinnville. She even has a brother four years older, just like Kennedy. We couldn’t ask for a better match; Amy is a delight. Kennedy is looking forward to playing with Amy again on Tuesday when we will be in Day Treatment all day. When it was time to go, she said goodbye and had no problem going to the procedure room. What a nice change!

Kennedy had another LP yesterday and more Methotrexate in her CNS (central nervous system/spinal fluid) and the ever lovely Vincristine. She slept all evening, was up for a few hours and then slept until 10:30 this morning. She was exhausted. She doesn’t have a lot of the nasty side effects she has had in the past but of course it has only been 24 hours. We’ll see how she feels in a couple of days. Next week she is back to 4 days of Ara-C. Her platelets were good, after her middle of the night transfusion in the ER, and her RBC was good but her WBC was critically low. This made her ANC 440. Dr. Norwood said that it must be 750 by Tuesday for the Ara-C otherwise she is at high risk for a bacterial blood infection. He does not believe the chemo she had yesterday would cause her numbers to fall, but we are just lying low so she won’t pick up a virus by then. She was mad because Emily was supposed to stay the night but it will have to be in a couple of weeks. If her numbers are low then it will delay the Ara-C another week-something we do not need. Then she’ll have 3 days to recover before she gets another 4 day dose. I will be posting her treatment schedule for the current phase so everyone will have an idea of where she is at. Of course, it is always tentative and many things could affect the schedule.

Holly and Sammi watched Austin yesterday. He had such a great time that he wanted to go back today even though Kennedy didn’t have chemo. I told him maybe next week since Tuesday will be a long day. Kennedy will be getting Cyclophosphamide which takes 30 minutes. She must have 2 hours of fluid prior to the dose and then 4 hours of fluid after. This is to ensure that her kidneys will process it without toxic build up. This chemo drug gave her a very unusual metallic smell for about 48 hours. She also ended up with a 6 day hospital stay after this and the Ara-C. Not fun at all! Please pray that it goes well and Kennedy does not have to be in the hospital. I know she is looking forward to attending the Spaghetti Feed and would be disappointed if something happened.

On a note of good news, Kennedy qualified and will be receiving SSI benefits while she is in treatment. We have a follow-up interview tomorrow via phone and then her benefits will begin. They are retroactive to the date of her diagnosis, since we applied ASAP, so that will help. We’re still examining all of our options for insurance coverage because I am very worried about what will happen with OHP.

Please pray for:

-Kennedy’s health, healing and chemo
-Austin
-Melenie
-Keith
-work/finances

-Warren, a 12 year old with Burkitt’s Lymphoma who is having a very difficult time with side effects from his chemo schedule. His tumor is gone but he still must finish treatment to ensure it does not return.

-Maggie, a 3 year old with very rare mixed-lineage leukemia who began radiation and intense chemotherapy to prepare her for her unrelated donor transplant.

-Oliver, an 8 month old fighting AML leukemia and just recently diagnosed.

-All the kids fighting for their lives in their battle with cancer.

Thank you for everything. We love you all so much!

Melenie

July 4, 2005

Category: Treatment – Melenie 10:22 pm

When Kennedy was first diagnosed, we heard the doctors, nurses and other families describe the journey as a rollercoaster. While the first two weeks of induction were crazy, things slowed down and returned to “normal” for the last two weeks. We assumed that when induction was over things would begin to stabilize but it just continues to be crazy with corkscrew turns, steep hills, sheer drops and upside down loops. What a wild ride! Kennedy has been handling the side effects of Vincristine much better this time. Her WBC has risen and dipped and risen again. Her platelets however, have suffered terribly this round. As I mentioned on Saturday, her platelets were low (76), remember normal is 140, but we were sure she could make it until Tuesday when she was scheduled for her next round of chemo in Day Treatment. When she woke up Sunday morning she had about 5 noticable bruises and when I brushed her teeth, she had 4 spots that bled a significant amount. I continued to watch her and by the evening she had close to 30 bruises and had not been playing rough or fallen. I called Dr. Norwood who told us to watch her and call him in the morning (July 4). She woke up about 11 pm with more bruises, that were red, and petechiae on her legs, arms and torso. I called him back and he told us to go to Emanuel’s ER for platelets. Kennedy has experienced internal bleeding in her kidneys and stomach with low platelets before and he felt it could not wait until morning. He called me back to remind me to pack a bag because if Kennedy was running a fever we would not be going home. Keith and I drove to Emanuel despite being exhausted. After finally becoming comfortable with the staff at the Onc/Hemat clinic, Day Treatment and peds floor she encountered strangers who wore gowns, masks and gloves and wanted to access her port. She was horrified and began screaming and crying. We had to hold her down while they accessed and taped her port. It was terrible. I do realize they were doing their best, helping us and doing their job but I HATE going through this crap! We no more get her comfortable and used to things when something else happens that blows it! The good news of the night was her favorite nurses (Megan) popped in to see her. We were relieved. It always feels better to see a familiar face. Kennedy’s favorite singer is Gretchen Wilson (Red Neck Woman) and Megan had been to the concert last weekend. While she was there she bought Kennedy a poster. Kennedy was excited about it today but was just too upset last night. After receiving platelets, and because she did not have a fever, we were free to go and crashed in our beds around 5 am. I do love a good sunrise but I was not happy to see the one this morning 🙂 The ER staff was wonderful and got us through as quickly as possible, it was just that the whole ordeal was traumatic.

Last night at the ER as we walked by the room where Kennedy was diagnosed, I realized today (Monday) was 8 weeks for us since we heard the words “leukemia” and “your daughter” in the same sentence. Wow. A lot has changed in just 8 weeks. I still long to run back in time to before she was sick. The feeling is worse when I see pictures of her or watch a home video. This horrible sinking pit in my stomach returns. I still feel like I have jumped out of an airplane with no parachute. I struggle to grasp something to keep from falling. I now cling tightly to my faith. It’s amazing. The last couple of years I have really struggled with my beliefs and my faith. Going to school has made me question so much of what I thought I knew. From the moment of Kennedy’s diagnosis, the moment we heard those words, I knew without a doubt that God had a purpose and plan for Kennedy and our family. It was faith in its purest form. A trusting and believing I have never felt through all of my trials. I know that no matter the outcome, that God will use our experience to bless others beyond anything we can imagine. It is this faith and undying hope that allows me to have strength for my trials and strength for my family. I am extremely grateful that so many people have prayed for Kennedy and shared with others her story. God continues to provide exactly what we need for each and every moment.

On the note of God providing…after having a crazy night, and early morning, my Auntie Sue and cousins Holly and Sammi came over. We always laugh like crazy together and I needed that to uplift my spirits. Holly shared something wonderful, 50 minutes of laughter is equivalant to 30 minutes on a treadmill. I certainly did well today. In addition to bringing Kennedy a wonderful horse that she loves to sit on, a new Barbie plate, a beautiful bandana for her hair, a soft knitted chemo cap and “fancy” (in her words!) zipper pull, they brought laughter and funny stories to our house. Holly shared her stories from Mexico (including a touching story about the family they built a house for), Sammi shared her gorgeous new smile (no braces) and Auntie Sue shared her magical laughter and warming hugs. It was exactly what we needed. God knows precisily what will help us and we don’t always have to tell Him. Terry, our neighbor, also brought the most beautiful blue Hydrangeas over this evening to share with Kennedy. My mom normally can not have flowers in the house, but these were fine and look wonderful on our table.

Austin and Keith went to the Buckeroo. They had a wonderful time and Austin won a big Tigger for him and a husky dog for Kennedy. They enjoyed the clowns, horses, bull riders and sunshine. They needed the “guy time” and Kennedy and I needed a nap! We slept the afternoon away and Kennedy still wants to go to sleep tonight. That is a blessing.

Well, tomorrow it’s off to Day Treatment for an LP with MTX and more Mean Christine (or Mr. Grinch!) the lovely-Vincristine**** 🙁

We’ll check in soon. Lots of love and Happy 4th of July!!

Keith, Mel, Austin and Kennedy