Courage for Kennedy – Journal


August 26, 2005

Category: Treatment – Melenie 10:52 pm

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

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

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

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

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

Also, continued prayer for our other friends fighting cancer:

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

Love-Hope-Courage

Melenie

August 22, 2005

Category: Fundraisers,Treatment – Melenie 2:12 pm

Well, we’re home. We’re not supposed to be, but God is clearly using this as an opportunity to teach me about patience and giving up the control. Kennedy’s numbers actually look fantastic! Her platelets are above normal, all of her red blood numbers are normal, her white count is recovering and made huge strides this week but her ANC is still trying to recover. Last Monday it was only 20 and the preliminary number this morning was 430 (computer estimates while still checking). It needed to be 750 so there was HUGE concern! If she had another week’s delay, she could be pulled from the study and in danger of relapse so I was very upset. Dr. Olson said that her numbers are looking incredibly good, and her monocytes (which show that her WBC is recovering) were really high and that when she calculated her ANC it was over 650. She believes that they are recovering at such a fast rate, that Kennedy should be at 750 anyday and so they left Kennedy’s port access in (good thing she had a long tubby last night!)and we are to report back to day treatment tomorrow morning at 8am. I assume if they are higher but not yet 750, we will be going home and return to day treatment Wednesday at 8am. Nothing like throwing a wrench in my cogs! Apparently, I am not getting the message about giving up control. I lay it before Jesus, then take it back, then lay it down, and take it up again. When am I going to get it??? In most areas of my life I have strived to have control and this is no exception. I had to take a step back and remember that God works in His own time and that 1 day to Him is as 1000 years. God’s timing is perfect and He knows Kennedy and her body better than any of us-He desires wholeness for her and there is absolutely a reason why her body needs more time to heal before fighting the next battle. It was just more stressful because of PMS and Kennedy having a RAGING temper tantrum because she was hungry and tired! You know, God may not give me more than I can handle, but I sure wish He didn’t trust me so much! Somedays I just feel so inadequate to handle all of this. I have to wonder what in the world He was thinking when He allowed us to walk through this fire. I haven’t shown that I am capable as far as I can see. I guess He must see something here that I am missing…sure wish I knew what it was! So, am I going to be at the fundraiser on Saturday? Kennedy will not and I may not (if she is still inpatient) but Keith and my family will be so please, still come and enjoy yourselves and know that we appreciate everyone and their support very much. I will update this site as more information and decisions become available! 🙂

As I mentioned in my last journal entry, T-shirts will soon be available (this FRIDAY!) to support Kennedy. Many thanks to the Schermies (Auntie Sue especially!) and my cousin Chad for all their hard work. Salem Emblem Shop donated much of the expense to put these together and we will be able to offer the shirts for a steal of a price $10!!!! We will have a range of sizes available from a child’s small (6-8) to an adult 3X. If we run out, we can order more! They will have a picture of Kennedy on the front and say, “Courage 4 Kennedy” and “Little Warrior-Fighting Leukemia.” on the back it will have the emblem for SES and will have scripture verse John 16:33. All of the profits will go to the Kennedy B. Duval Contribution Fund at Wells Fargo Bank to help support Kennedy and our family as we cover unpaid medical and care expenses. I will be posting pictures soon. They will sale quickly so feel free to e-mail me directly to pre-order yours!

Love-Peace-Courage

Melenie

August 18, 2005

Category: Fundraisers,Treatment – Melenie 1:36 pm

It has been a pretty quiet week at home but it has allowed for lots of play and downtime with the kids. Kennedy’s foot is much better and is no longer red. Thank you to everyone for all of your prayers. She ran a low grade fever (99 degrees) while it was healing but now she is doing just fine. She feels really good, her bruises are healing with no new ones appearing and she is getting plenty of sleep (after weeks of insomnia). I’m sure her bone marrow is working well and all should be on for Monday’s round of chemotherapy. She is getting better at taking the appetite stimulant although it doesn’t really seem like she’s eating more. It causes her to be somewhat drowsy, this is probably why she is sleeping better!, and she is developing a light rash on her legs that we think is from the medicine. I sure wish she would eat more-she weighed 38lbs on Monday which is about a 1/2lb drop from where she has been the last few weeks. I know, I know, it doesn’t sound like much but any drop at this point is a worry to her oncology team. If she drops below 37lbs., they will try the other appetite stimulant and if she continues to drop below 35lbs., they will have no choice but to use an NG tube. We did get some naturopathic advice from another parent (thanks Lauren and April!) that should help with the mouth sores and we will be discussing this with Dr. Olson on Monday. Of course, as with all meds, we will have to get Kennedy to take it in the first place.

Austin started soccer and had a great time! He was relieved that there were kids he knew on his team. Unlike baseball, they don’t do it by school but rather random unless you request a certain coach or to be on a team with certain kids. Because we signed up so late in the summer, I was very worried that we wouldn’t get the team we wanted. No worry, God took care of that one, Austin is on the same soccer team as his best bud, Skyler. He had vowed not to play if he couldn’t be on Skyler’s team. If you remember, when Austin shaved his head (all the way to the skin) in May to support his sister, some kids were actually teasing him. I went to the school and discussed it with his teachers and also shared some information on childhood leukemia so they could have the discussion in class. Skyler, to show his support for Austin, shaved his head. Austin told me that Skyler was his real friend. After the discussion, all of the teasing stopped and the kids actually supported Austin and when Skyler shaved his head too, other kids wanted to shave their heads. Anyway, Austin and Skyler have both been very busy this summer so I’m sure they are looking forward to hanging out again very soon.

I spoke with James yesterday about next weekend’s fundraiser and it sounds awesome! There will be a live band playing all kinds of rock n roll from the old stuff to some new stuff. They will also be having a 50/50 raffle to raise money for Kennedy. They are a clean and sober motorcycle club and support a family atmosphere so feel free to bring the kiddos. I can understand those kids who will be home if parents plan to dance the night away! Dinner will be at 6pm, then a speaker’s meeting at 6:30pm (they support AA and NA groups), a motorcycle show at 8pm and the dance from 9pm until 1am! The cost for all of this fun? An amazing $5!!! Yes, it’s true! We look forward to seeing everyone there.

As I briefly mentioned in my last journal entry, T-shirts will soon be available to support Kennedy. Many thanks to the Schermies (Auntie Sue especially!) and my cousin Chad for all their hard work. Salem Emblem Shop donated much of the expense to put these together and we will be able to offer the shirts for a steal of a price $10!!!! We will have a range of sizes available from a child’s small (6-8) to an adult 3X. If we run out, we can order more! They will have a picture of Kennedy on the front and say, “Courage 4 Kennedy Brooke” and “Little Warrior-Fighting Leukemia.” on the back it will have the emblem for SES and will have scripture verse John 16:33. All of the profits will go to the Kennedy B. Duval Contribution Fund at Wells Fargo Bank to help support Kennedy and our family as we cover unpaid medical and care expenses. I will be posting pictures soon. They will sale quickly so feel free to e-mail me directly to pre-order yours!

Love-Peace-Courage

Melenie

August 15, 2005

Category: Fundraisers,Treatment – Melenie 4:37 pm

That rest week we wanted? It’s ours, and it’s a mixed blessing. We arrived at day treatment at 8am only to find out that while Kennedy’s wbc has begun to recover (going from 0.3 on Thursday to 0.9 today), her ANC was only 20. That’s right-20. It needs to be 750 to start IM1 and 1500-11,000 is normal. This means we are staying home and doing nothing until we return to day treatment on Monday when Dr. Norwood expects her numbers to be fine. There are some good indications in her blood work that show her counts are about to recover in a big way. Her platelets, which needed to be 75, were at 58. If her bone marrow was not recovering, they would have been at critical levels again and she would have needed another transfusion, but they are coming around too. Dr. Norwood decided to go ahead with the bone marrow aspiration so we can see where she is at. They will also be checking for minimal residule disease again and should have the results of that sometime next week. BMAs and LPs are always very stressful for me because I am worried they won’t come back clear. A relapse right now would decrease her cure rate substantially and require a transplant. He expects things to be good but I can’t help but worry. So, the plan is that next week we go inpatient. If for some reason her numbers are not recovered, they will be contacting the chair of the research committee to make a decision. Kennedy really had a tough time during the consolidation phase (tougher than most kids) so while he thinks she will be fine, he said there is a slight chance there could be a problem. Dr. Norwood said it is fine line to walk between killing the cancer and killing the patient with chemo and the dance must be thought out very carefully.

Dr. Norwood believes that her ANC may be having a hard time recovering too because she has an infection on her foot. She scraped it a week or so ago and while it was healing fine, she couldn’t help but pick the scab and now there is an infection in it. He traced the outline of it with a pen and said if it gets bigger, begins to be sore around it, or she runs a fever to call him immediately. We are treating very aggressively at home with peroxide and antibiotic cream but with a very suppressed immune system, it is having a hard time healing. Please pray for the complete healing of her foot with no hospital stay and that it does not cause a further delay in her chemotherapy.

On a good note, I made some bracelets for the kids. I bought the medical ID tags through a company but rather than have a plain, silver chain I made bracelets with beads and clasps to interchange them. Kennedy’s has ladybugs and says “courage” in gold and Austin’s has baseballs and says “great kid.” Well, the nurses and other parents saw them and thought I should make and sell them. They retail online for between $40-$50 but can be made for less than $10. I am praying about this as I’m not sure I can handle one more thing some days. They are fast to make and would turn a profit-even if I sold them for $20. Anyway, they are really cute and when you see the kids you should ask them to show you! They would be thrilled.

Well, soccer starts tomorrow! Austin couldn’t be happier. I’ll post pictures soon.

*Quick note-thanks to my wonderful Auntie Sue and cousin Chad, T-shirts supporting Kennedy will soon be available!!! The shirts will have some information, a scripture verse and her adorable face and will be in adult and childrens sizes! More details and pictures as soon as possible-WATCH HERE!

Peace-Love-Courage
Melenie

August 13, 2005

Category: Fundraisers,Treatment – Melenie 10:18 pm

Ok, I tried this yesterday and when I was almost done, I accidently hit a button on my keyboard and deleted everything! I was so mad that I couldn’t touch it again until now-but somehow that is okay because now I have more to write! As if I need an excuse to be long winded! Enough about me…Kennedy had a blood check on Thursday and her counts were still pretty low. Her platelets were at 76 (half of normal) but this was not an accurate indicator of whether or not they were recovering because she just recieved a transfusion on Monday. Her WBC was only 0.3 so her ANC was still shot. Her red count was a mess with a hemoglobin of only 7 so she received a transfusion of red cells and looks so much better. She never ceases to amaze me-just last week (August 1) she had to be held down to have her port accessed and now she sits up without crying or fighting. Keith said that maybe she realized (after 3 months) that this was going to have to happen with or without her cooperation. She’s comfortable enough now to actually push her own flush and Heprin (to prevent clotting) when she goes to clinic or day treatment. I believe she is looking for control wherever she can find it and that is very empowering for her. So this is the plan for Interim Maintenance 1-she will go to day treatment on Monday at 8am as planned. We are to pack as if we are staying for the full 5 days. If her counts are not recovering (her ANC must be 750 and her platelets must be 75) we will go home and do it all again on Thursday at 8am. If her counts are good, she will be sedated and will have a bone marrow aspiration and lumbar puncture with intrathecal (in her spinal fluid) Methotrexate. Kennedy will then be admitted and recieve 24 hours of high dose Methotrexate and IV Vincristine. I told Dr. Olson that they are making it very difficult for us to make any plans and she laughed! As a planner (ok, and self proclaimed control freak) this is a huge learning experience for me. I know without a doubt that God is using this to work on some real strongholds in my life but it doesn’t necessarily mean that it is going well or that I’m handing it over easily. I will be posting on Monday one way or the other to keep everyone updated.

In addition to the above, we have started Kennedy in a study regarding appetite stimulants. Kennedy has already lost almost 15 percent of her body weight since her treatment began (going from 44 lbs. at diagnosis to 38 lbs.) and while this may seem like a small amount-for those who have seen her it is a big difference. She went from wearing a size 6 pants back to a 4 and she weighs less than she did a year ago. This study compares two drugs-one that they have given children for years and one that they have used with women who are being treated for breast cancer with less side effects. Right now Kennedy is taking the one that is normally given to children and does she hate it! It smells like mouthwash and she says it is minty hot-two flavors she HATES! Her first dose was a real battle but this evening went better. It will also make her drowsy which is good because she has been suffering from insomnia. If she continues to lose weight, they will try the new drug and if this does not help we will have no choice but to insert an NG tube. It is our prayer that the appetite stimulant works with few side effects.

Her spirts are good though and today she went with Grammie, Mommy, Auntie Caryn, Emily and Amber to the Farmer’s Market in Gresham. There was a cruise in going on so not a whole lot of shopping to do but it was still fun. She even insisted on doing some walking which was a change from last week. Tonight she was exhausted and despite having her cousins staying the night crashed early. This is really nice since she has been going to bed as late as 3am. Last night she went to sleep good but woke up around 2:30am and lost everything in her stomach-not a big deal except it was in my bed and luckily Daddy was there to give me a hand. I called Dr. Norwood (much to his delight) and he said that because she had no other symptoms (fever, continuous vomiting, diarrhea, etc.) he wanted me to call in today and let him know how she was doing. When I talked to him this afternoon (Kennedy was fine today) he only vaguely remembered talking to me and apologized for babbling. I laughed and told him it was fine. Please pray for the two oncologists. Since Dr. Chu left they have really been swamped and while they are in the process of interviewing, they still haven’t found the right one. Both doctors are incredible and we think the world of them but I know this must really be taking a toll on them.

Austin is excited for soccer to start. He has his first practice on Tuesday and can’t wait to hang with his pals again. While he has had many offers this summer, it has been hard for him to be away from Kennedy and I, not to mention that he is a very big help at the hospital. 🙂 He likes to push his sister’s stroller when I don’t carry her, and helps with getting things she needs, asking questions, entertaining her, etc. I told him that I don’t know what I’ll do without him! It has helped him a lot to feel like he is a part of this, we are just very careful not to give him more than he wants and he is very good about expressing what his limits are! Tonight Austin, Papa and Daddy went to the Ross Coleman Invitational to raise money for local bareback rider, Jack Peterkin. For those who are big rodeo fans, riders such as Ross, Tator Porter and Justin McBride are in town so Austin was looking forward to this all week. Next weekend is my date with Austin and I think we might go see a movie-at least that will be my suggestion. 🙂

Keith and I are doing well. He is enjoying his new job and is actually making about the same as what he did driving a dumptruck. That is such a relief, the bonus is of course, that he also has benefits! He really likes the guys he works with and is actually going to play poker next weekend at another driver’s house. That will be fun for him and it is good for him to hang with the guys. I tend to struggle more outwardly than he does (he internalizes everything) but this could be because I’m in the trenches day in and day out and tend to wear all of my emotions on my sleeve. I know that this is really hard on him too (and having to work so much instead of be with us) so this should be fun for him. Continued prayer for us and for strength and wisdom always goes without saying.

A quick reminder-the Motorcycle Show and Benefit Dinner Dance are in 2 weeks and it is sure to be a blast! With Kennedy’s round of treatment, it is uncertain whether or not she will be able to attend but we plan to be there and look forward to seeing everyone there! Also, we are still collecting for the garage sale and if anyone has donations they can call us to make arrangements to get the items there. This is going to be big so feel free to attend the sale too and find that treasure! For those who remember the donation of pennies from the Carwash/Plant Sale the final total was over $271!! That is A LOT of pennies! There are more fundraisers scheduled for September and beyond so keep checking back for details on those!

Ok, I’m beat and must hit the hay soon but I will post Monday to keep everyone updated. Oh, I do hope to add new pictures soon. I’m having a problem with the upstairs computer which has all the pictures downloaded on it. I’ll try and get this resolved soon!

Love and blessings,
Melenie

August 9, 2005

Category: Treatment – Melenie 1:37 pm

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

August 5, 2005

Category: Fundraisers,Treatment – Melenie 8:01 pm

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

August 1, 2005

Category: Fundraisers,Gratitude,Treatment – Melenie 11:12 pm

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