Kennedy update:
It was two steps forward and one step back, but it is moving exactly how her drs expected. The GREATEST news of the day is that her medicine is en route!!!! It is true! After trying desperately to reach someone in Como, Italy with little success, Dr. Olson began working to find some here in the US. As a Christmas miracle, she did. Boy, is it funny how things work out. She was told the person who had it was in Cleveland but was given a North Carolina phone number. Darlene called and confirmed that it was North Carolina and after jumping through the hoops (just before 5 pm their time on the 23rd) to get the FDA to let Kennedy have it, an angel in disguise hand delivered 3 boxes to Fed Ex to be overnighted to our baby girl. This was the best news we could get! It will arrive tomorrow afternoon and she will recieve it shortly after. On Tuesday, when Italy reopens, Dr. Olson will have to reorder enough to restock NC and get Kennedy all of the doses she will need but this gets us moving on it. She told us that without this drug, the survival rate was about 20% and with it about 50%. Amazing how in May we groaned about a 70% cure rate at 5 years off chemo. We gladly are taking the 50%. Kennedy has some big things on her side-she only has liver failure as opposed to multi-organ failure and she has not had a liver or bone marrow transplant. The thing hurting her is that she also has the DIC to deal with, hence the need for this experimental drug. While it appears that it has not been studied on children, they do believe it will work the same way. They assured us it will not worsen her condition but there is the possiblity it will not help. A very slim possiblity! The rare times they have been able to use it for children they have had very positive results. We could not have been more excited just to hear a possible cure was on its way to Portland. It was God’s hand as every piece had to fall in to place to make this happen on the biggest holiday of the year and on such short notice.

She is beginning to fill with fluid again and they plan to drain it off tomorrow morning at the latest. It is affecting her breathing again, though not enough to require incubation. We had a couple scares this evening, first Kennedy was coughing and stopped breathing. Her oxygen saturation levels dipped into the 60s and her respiration, when she resumed breathing, was quick and shallow. They moved her back from respiratory therapy every 4 hours (or every 2 hours as needed) to every 2 hours. They also increased her Versed and Morphine to keep her calm. She is doing better but they are watching her blood gas levels very closely as she seems to struggle getting the CO2 out more than good oxygen in. Second, she was straining when she was agitated and burst a blood vessel in her eye. While this was very upsetting for me, the majority of the white part of her eye is now blood red, the nurse was not concerned and this helped me to relax a little. My biggest fear was spontaneous bleeding from her eye but this doesn’t seem to be the case.

I saw April and Josh Brenneman on the School Age side today and was thrilled to have the support of someone who has seen many trials over the last year. Her words of encouragement and empathy were priceless. Josh looked wonderful and has the most beautiful hair on his head. We rejoice with them as they are all home for Christmas this year and will continue to pray for them as they face the future and its obstacles. I’m sure we will have the opportunity to catch up with them again soon.

Also, many thanks to my sister, Katy, Kim and Becky for the food and tons of laughter. I REALLY needed all of it and my spirits were definitely lifted as we laughed about silly kids and husbands (not to mention all the other girl gossip). It was EXACTLY what my heart needed today. I’m so grateful my dad has been able to be here and could bring my little Bubba up today despite it being hard for all of us. Mom brought me the things I needed (thanks for the deo!) and took care of things at work for Keith so he could be here-and that is a HUGE blessing. Last, but certainly not least, thanks so much to my dear brother-in-law, Jeff, and his mother Kathie who have made it possible for my sister to spend 2+ nights with me. You all have no idea how much this all means. (Still keep the home cooked meals coming!!!) Oh, and thanks to Amy (Kennedy’s PT) for the muffins and all the nurses and staff who love our daughter so much that they find free time to visit and encourage us. And how could I forget Dr. Skau. He showed up to see me at my best (again) this morning and offer his soothing words that always take the edge off. He is the BEST pediatrician and along with the other docs (we love you too!) and the incredible staff at EPPC, they have supported us since before Bubba was born through every cold and stitch and staple and now the big stuff to make our lives so much easier and during this time, bearable.

Well, I hate to cut this short (for me anyway) but I am exhausted and Daddy is on watch to night so I want SLEEP and a shower!!!

Until tomorrow,
Mel

Okay, it amazes me how things can change so quickly. We just never seem to know what is going on until it is in our faces.

Her liver failure now has a name, Veno-Occlusive Disease (VOD), and to add to the confusion, she also is suffering from Disemminated Intravascular Coagulopathy (DIC). What does this mean? Well, let’s start with the easier one to describe: DIC occurs when your body becomes confused, either by infection or in Kennedy’s case medication, and devours/stops making blood clotting neccesities (platelets, plasma, vitamin K, etc.) and this is caused by the VOD. Kennedy has no ability to produce her own clotting factors and her liver is using up all the product we are putting in. So what is VOD? According to the information we received and what we can understand from the doctors, it is when there is damage to the blood vessels (which can be caused by chemotherapy) and specifically in the case of VOD, when the damage occurs “to the cells that line the walls of small veins in the liver” and blood clots form “causing swelling of the walls and vein blockage.” Essentially, the veins became damaged, causing her body to send clotting agents to the liver and keeping them from going anywhere else, her liver becomes full of blood clots and no longer processes the chemicals in the body, such as enzymes and ammonia, and backing up the liver. Her blood is no longer able to clear itself of toxins and fluid because it can not access the liver, and this blood and fluids are backing up all over her body causing swelling. Untreated, VOD eventually causes major organ failure and death. So, how are we treating this? Very carefully. Because of Kennedy’s inability to clot blood through out her body (everything is being sent to the liver that we give her and nothing new is being made) we can not just “thin her blood with Heparin” and move on. This overloading of clots has caused full liver failure and thinning them is only part of the solution. Right now, we are flooding her body with blood products to compensate (4 units of platelets, 3 units of plasma, and 2 units of packed red cells in the last 24 hours) and using meds to clear the fluid and ammonia from her system. However, they only do so much. Kennedy’s organs are under tremendous stress and pressure from the build up of fluid so it was necessary to drain off as much fluid as we could to make room and hopefully force the fluid in her chest cavity (lungs and the area between her lungs and ribcage) to move down. This afternoon they drained off 1 liter of fluid and blood from her abdomen with a catheter. Of course, because of the condition of her liver, it will return and need to be drained again everyday or every other day as needed. The good news is Kennedy is not on a respirator at this time although her chances are greater than 50% that she will eventually need to be. She is getting respiratory therapy every two hours and oxygen and we want her to breathe on her own as long as she can without causing too much stress on her heart and lungs. They are literally treating her for the moment and making decisions about her care hourly. Kennedy is considered in critical but stable condition. How can we recover her liver? Kennedy will take a very experimental drug called Defibrotide which is currently manufactured in Italy. This is her best and maybe only chance at recovery. Because it is not currently approved for use in the US, it makes it a little more difficult to come by and now it is a matter of contacting the right people and jumping through the right hoops. Defibrotide will attack and break up only the clots in her liver causing the back up to be stopped and will hopefully allow her liver to begin processing blood products and recover. That is the plan and they have had very good results when it has been used. So the drugs we are giving her now for the VOD are only trying to do what her liver is unable to as we wait for the new drug that can hopefully give her liver the opportunity to function again. She is also beginning to turn “yellow” as billirubin builds up in her system. The conclusion is that she is getting supportive care (treating the symptoms) and soon they will hopefully be curing the problem. They continue to remind us that VOD can be fatal and that while many kids do well-Kennedy is Kennedy.

Some things we did find out. They only see VOD at Emanuel about one case every two years and Dr. Olson can’t remember the last time she saw it occur in a patient that did not have a bone marrow transplant. In her research today, she only found one patient who had DIC and liver problems, but it did not develop in to VOD. This makes our girl one in a million for sure. COG (Children’s Oncology Group), the organization that oversees Kennedy’s and many other oncology research protocols, and it’s doctors all over the US and Canada are reviewing her case and giving input in to how they think it could be treated or prevented. I reminded Dr. Olson that Kennedy has never done anything by the book since she was diagnosed and why should this be any different? We still don’t know how this will affect her chemo-she is working with COG and specifically the head of Kennedy’s particular research (AALL0232-arm DH) to make those decisions because there are drugs she will no longer be able to use. Scary for both her current condition and for treating her leukemia (please remember that Kennedy is high risk for relapse and was a slow responder to chemo).

They are also testing Kennedy for a genetic disorder that causes muscle weakness-after all, let’s just add fuel to the fire, huh?

On top of this wonderful crap sandwich-Kennedy still does NOT have medical coverage for her cancer treatment. She really is our million dollar baby!!! And worth every penny, I might add! Oh, and did I mention it was Christmas??? Merry, merry Christmas!

How long will we be here? Very good question-no one can really tell us for sure. Best case scenario, Kennedy can be transferred to the “peds floor” Sunday (although waiting on the new drug makes this very unlikely) and we will spend a few weeks there. Happy Christmas in the Penthouse suite at Hotel Emanuel. They also reminded us that she will get worse before she gets better. Well now, that is encouraging. You mean it can get worse????

How are we holding up? Again, a very thoughtful question. We get through each moment and each moment only.

How can you help? Please send food-really! We have had our fill of hospital food over the last 7 months and would gladly eat your leftovers. No, not the ones the dog won’t eat-you know those which you can’t be sure when you had them or what they are but if you think about it, and truly want to bless us, please send any extras you have. It costs a fortune to eat here and it’s only good the first few times through the menu (it does repeat remember)-after all, people rarely eat here more than a few days. I mean the grill specials are the same every week we’ve been here (7 months, remember????). Home cooked is best since take out has also been exhausted (pizza and burgers). I’m not picky! Not as bad as Keith and the kids at least. So, prayers and food. Lots of hope and faith also, and food. I actually dream about tomato soup and cheese sandwiches.

Love-Hope-Faith,
Mel

And keep the encouraging messages in the Guestbook and food coming. We actually have our own fridge right now in the PICU.

Kennedy is in the pediatric ICU
Ok, so I haven’t gotten better at updating but that is my New Year’s Resolution! I just knew I had to post now as Kennedy is in critical condition. Two weeks of Ara-C finally did it and last Thursday she needed a platelet transfusion (her platelets were 7 and normal is 140-440). Normally not a big deal and expected with Ara-C but not the high light of our day. Friday she needed redcells so we spent a very long day in Day Treatment but again, it was expected. Kennedy’s ANC was at 1470 on Thursday and she was rather chipper, so we went to the family Christmas party at Caryn’s for some yuletide cheer. That is when we first became aware that there was a problem. Kennedy was running a fever (again, another common side effect of Ara-C) but it was 102 and she had a bloody nose that just wouldn’t stop. We called Dr. Norwood and he sent us to the ER not thinking we would actually have to stay. However, her ANC was now 670 and her platelets were less than 5. We didn’t know how much exactly because when they are so low (below 5) they can’t even see them without a very high power microscope which is not used for a general CBC. We were admitted, got platelets and antibiotics and moved forward. Sunday, she got more blood and her platelets were 38. Monday she was still chipper but also still running a fever. Her ANC was coming up, her red count was steady but her platelets were again less than 5. More platelets and antibiotics but plans to go home Tuesday morning. Next morning her ANC was over 1000 and her platlets were…you guessed it, less than 5. WHAT?????? More platelets, chemo (including PEG which only made it worse) and antibiotics and we were on our way home. Later that night both Keith and I knew something was terribly wrong. Kennedy was vomiting stomach fluid everytime she drank water. She had vomitted in the hospital so we didn’t think too much about it. At 10am she vomitted blood (old blood with what appeared to be clots but may have been tissue) but was not running a fever. I called the clinic and Sam (Kenn’s favorite clinic nurse) said that she would fit her in. We were not expected to return until Friday morning. We got here and guess what? Yes, her platelets were less than 5 and she had more bruises and petichiae (more everyday really). On top of it, her torso (both stomach and back) were really hurting her. They knew she was vomitting blood, was clearly bleeding and having severe pain. They ran all kinds of tests hoping something would at least rear it’s ugly head. (Oh, I forgot to mention that she had blood cultures done-looking for bacteria-in the hospital but nothing ever showed up) Several tests came back inconclusive because of the Heparin in her line so they had to access a vein. They poked several times with no luck (her veins were too little and damaged) so in Day Treatment, they had no choice but to access her through her head. You heard me right, the top of her head!! Dr. Olson and Dr. Norwood both showed up and weren’t agreeing on what it was or what to do. We were admitted to the peds floor for plasma and vitamin K. Plasma is RARELY given to patients and only because Kennedy had absolutely no ability to clot. If she had fallen, she could have literally bled to death in a very short time. Oh, and by this time Kennedy had begun to swell. Within a couple of hours, her deep inney belly button was flat and brusing. She received her plasma and morphine and within an hour and a half, her abdomen had grown by 4 cm. The resident was called and she was admitted to the PICU. There one of our favorite Drs. showed and went over all the possiblities from stomach bleeding to major organs uncontrollably bleeding in to her stomach. The options for treatment ranged from stopping the bleeding and healing to surgery and a respirator. She had more testing (requiring more sticks) and had she not been profusely bleeding they would have added a Hickman catheter. They had to find veins for at least 2 more IVs and immediately. It took about 12 additional pokes and nearly sedating her completely to get 3 more. They basically have to flood her body with clotting factors to stop the bleeding. This means pressure on her lungs and a respirator. The only way to do this was to have more access internally. They sent her for a CAT scan which revealed lots of fluid in her stomach and fluid beginning to pool in her lungs that is collapsing the air sachs. They do not know where the bleeding is or what is causing the fluid but Kennedy is not urinating so there is concern regarding liver and kidney function. That is all I know at this time but they have listed her in critical condition and I will post new info as soon as I possibly can. In the mean while, please PRAY and sending healing thoughts her way, spread the word by forwarding her website info to everyone and anyone and post words of encouragement to her guestbook. Right now I have 445 new e-mails so I may not be checking those but I WILL check the guestbook.

We love you all!

HOPE and FAITH-never lose them,

Mel

UPDATE:
Kennedy is in liver failure probably brought on by her chemotherapy. They have not yet started a course of treatment but will in the next few hours. The next few days will be critical in knowing whether this can be reversed or is permanant and requiring a transplant; it will all be dependent upon how much damage has occured and how she responds to treatment. Liver failure brings a whole host of complications and has already begun to affect her stomach and lungs. PLEASE PRAY FOR KENNEDY’S RECOVERY!

‘Twas the night before Christmas, on oncology floor,
Not a creature was stirring, not even ‘resident
dujour.’
Stockings were hung on IV poles with care,
In hopes that St. Nicholas would soon find them
there.

The children were nestled in isolation from all,
While pulse-ox were beeping thoughout the hall.
And Mama in sweats and I with bald head,
Had just settled down on my hospital bed.

When at nurses’ station there rose such a clatter,
I sprang from my bed to see what was the matter.
Mom untangled my central line to be certain,
As I put on my mask and threw back the curtain.

When what to my wondering eyes should appear,
A sterilized wagon and eight nurses were here.
With assistance from Child Life so lively and quick,
I knew in a moment it must be St. Nick.

More rapid than nausea, St. Nick’s helpers came,
As he whistled and shouted and called chemo by name:
“Now Vincristine! Now Cytoxan! Now Methotrexate and
Cytarabine!
On Mercaptopurine! On Doxorubicin! On Thioguanine and
Pegaspargase!

To the end of the unit, through the anteroom wall!
Now cancer away!
Cancer away!
Cancer away, all!”

As pediatric patients watch with wide eyes,
When they meet with obstacles, high as the skies.
Where their childhood wishes can come true,
With faith in doctors and St. Nick too.

And then in a twinkling I heard down the hall,
The nurses were gathering one and all.
As I stuck out my head and was turning around,
Down the hall came St. Nicholas, with a great bound.

He was dressed head to toe in a mask and a gown,
In order to keep microscopic germs down.
A bundle of toys he had in his wagon
Overflowing the sides down the hall he was draggin’.

His eyes – how they twinkled! His cheeks how smitten!
His dimples, his nose, ‘hind the mask they were
hidden!
He had a broad face and a steroid kid’s belly,
That shook when he laughed, like ultrasound jelly.

He spoke not a word, but went straight to work
gifting,
And filled stockings with cure wishes, spirits
lifting.
And laying his finger aside of his nose,
Gave the kids hope with each chemo dose.

Then I heard him call,
As he sprang out of sight,
“Happy Christmas! Cancer Cures all!
And to all a good night.”

By Dawn-mom to cancer fighter, Clayton

Merry Christmas to all-and to all a good night!

Ok, now I am waaaaay behind in my updating. November 9th????? And it’s what? December 7th? What is up with that!!! I always mean to update after Kennedy has an appointment and then time just seems to get away from me. Let’s see….

Let me first say that Kennedy on steroids is a nightmare! Not only did she cry almost constantly, trading off only with screaming at one of us, she had to be with me (literally touching me) all the time. I never even went to the bathroom without her or took a shower without her howling on the other side of the shower door-despite the fact that she could see me! She became bloated-so much that none of her clothes fit her at all!-and as a result of the Doxorubicin all the beautiful, thick hair she began to grow stood on end and fell out within a week of her last dose. What a shock! She hasn’t been completely bald yet and the funny thing is she has about 15-3 inch hairs that she has never lost and they are out of control. I asked her if I could cut them and she said, “absolutely not!”

Where was I…her appointment on the 16th of November, her counts were still good but she was very difficult. We decided to continue her weekly physical therapy as the steroids were making her very weak. She could not even bend her knees when she walked and could only take about 10 steps at a time. On top of dealing with all of this, a boy in Austin’s class was exposed to the chicken pox and with the incubation period being 10-14 days, he missed all of that week and the few days prior to Thanksgiving. I was able to get his make-up work but between appointments and just dealing with Kennedy, it was a lot. Kennedy had her last day of steroids on November 22nd. That was something we could all be thankful for! She had her counts done on the 21st and they still looked pretty good so that was another blessing. My grandpa Sam and grandma Bev came up for Thanksgiving. It was so nice to just visit. Kennedy’s legs were getting worse and she began to complain of hip pain also. She spent several days taking Tylenol with codeine to manage it. Thankfully, the week of Thanksgiving was her rest week between treatments so no yucky meds and her body had time to recover.

I decided I would be brave and hit the stores on “Black Friday” but because Kennedy was not sleeping (steroids interupt the REM phase of sleep, cause nightmares and induce extreme hunger) at 4 am, I took her with me. Her immune system was good so that wasn’t a problem but people are so incredibly RUDE!!! We had our fill after 4 stores and most of my shopping was done. I was even able to buy things for Kennedy as she was more interested in the people fighting to get the last of the “lastest fad” that she could care less what I put in the cart.

We thought she’d be ready to rock-n-roll on Tuesday the 29th but the steroids finally caught up with her. While her platelets were high enough (they had to be 75), her ANC was only 500 (needed to be 750). Kennedy was right on the verge of needing red cells but they wanted to wait and see and we all hoped that be giving her another week off she would be better. The steroids were definitely wearing off and Kennedy was much nicer to be around. She was also walking better and was now able to bend her knees. Because of the doses of Vincristine though, she still can’t walk very far and tires easily-she also still has an awkward gait.

So this week? Kennedy had her LP and Methotrexate on Tuesday. Her right eye was very bloodshot and so her NP checked it out. There is always concern that Vincristine will also affect her vision but the NP thought it looked okay for now. It was a very long day as we were supposed to be there at 8 am-well, we made it at 9:30 after a “series of unfortunate events.” I guess that’s that way it goes. She needed 2 hours of pre-hydration for her Cyclophosphamide (sp?) and 4 hours post-hydration. She also had to have her Ara-C. Yes, that dreaded one that has caused hospital stays and transfusion dependency in the past. She did very well though. Now we just have to report to the nurse on Wed, Thurs, and Fri for Ara-C and count checks and next week do it all over again-minus the Cyclo. What joy!

And if all of this doesn’t make life worth living…we were denied Oregon Health Plan and Kennedy and Austin were no longer covered as of November 30th. Oh, but that’s okay, right? After all, Keith has a job now that has health insurance! Of course! Oh, but not for pre-existing conditions that were treated in the 6 months prior to our enrollment. What does that mean? Panic and chaos for us. After the Drs.’ office called them, we were told that unless Kennedy had been covered 12 months prior to our enrollment, she would have to wait 12 months before they will pay a dime for her cancer treatment. So when will they begin paying? September 1, 2006! Yes, you read that right! The social worker and insurance specialist told her that Kennedy didn’t even have cancer 12 months ago but has been covered since the day of her diagnosis. Yes, yes, yes we can send documentation but their policy is clear. So, options. They brought up the Oregon Medical Insurance Pool but of course Kennedy technically has insurance (they just won’t pay for any treatment, hospital stays or prescriptions related to her cancer) so she doesn’t qualify and we would have had to pay a minimum of $200/month for her OMIP. Let’s see, she qualifies for disability and Medicare but because people have lovingly provided money for her care and medical expenses and her father has a job, she has too many financial resources. So to get Kennedy back on OHP, Keith and I could legally seperate and live in different houses and he could pay childsupport to the state of Oregon, he could take a job making minimum wage so we would go bankrupt anyway or Kennedy could go into foster care. Lovely options. Both the hospital and clinic have reassured us that they will NOT stop treatment regardless of our ability to pay but that does little to keep us from going under. Could we sell our assets? Let’s see, we have one car that is 10 years old and a van that we owe 3x what it is worth that is 11 years old and both have over 100k miles on them. Hmmm…we have our computer we paid less than $500 for and 2 gold wedding bands. That ought to just about cover it. Sorry for all of the sarcasm, I’m just very upset. I just read in the paper today that 12% of Oregon’s children are without health insurance-well, let’s hope none of them have a life threatening illness. Thank you to everyone who has helped by offering donations, providing items for our family, helping or organizing fundraisers-you are all blessing us more than you can imagine. We are continually uplifted by your messages and prayers and outpouring of love and I don’t in anyway want to sound ungrateful-we are so blessed! I’m just saddened that money is more important to corporate America than the precious life of a child.

Love-Peace-Hope,
Melenie

Welcome back for our weekly update on Miss Kennedy and the Duval family. Kennedy just had her second dose of chemo for DI1 and completed her first week of steroids. Has it only been a week? The steroid monster makes it feel a lot longer than that! And we still have 2 weeks to go. Ugh! Her counts yesterday were good but steroids have a tendancy to falsely inflate her white count the first week so her ANC was over 4500 and her platelets were 440. She received more Vincristine (Mean Christine as we call it) and Doxorubicin. They expect her counts to bottom out later this week/weekend so she will probably need a transfusion in addition to her chemo next Tuesday. This will certainly make for a long day. She also had physical therapy with Amy. We talked about options for Kennedy and decided that she will have a brace she wears on alternating legs at night to stretch her muscles and tendons before they get tighter and then during the day, she will wear foot supports to help stabilize her ankle and arch. This will help her to run, walk, jump and climb with more confidence. You can check them out at www.surestep.net. They come in a variety of patterns and Kennedy has decided that she wants butterflies on hers. Amy said that kids really like them and want to wear them because they can do more things. Kennedy is the first “cancer kid” to be fitted with them at Emanuel. They usually are made for kids with Down’s Syndrome. Because of Kennedy’s long intensive treatment and problems with walking, they decided to try it. Most kids with tumors have shorter treatment schedules so while they have some of the same problems, their course of treatment does not warrant orthopedic devices. And while ALL kids have long treatment schedules, Kennedy’s is especially intensive due to her status of being high risk and slow responding. Her intensive lasts almost 1 year and includes many, many doses of Vincristine. We have just recently learned that Kennedy is the only child in the Legacy clinic on this research protocol (COG AALL0232, Arm DH) and only one other Leukemia child is on a tougher program. Well, our baby has been a test study from day 1, why should now be any different. The hope is that it will slow down the process and if the outcome is good, then they will use these supports for other kids. Amy expects Kennedy will have to wear them for the next year at least. She will regain her skills but it could be a long time coming.

Last Friday, Kennedy had her PEG injections. It did not go well. She screamed and fought and took a LONG time getting over it. We went to the store and got Chinese food, her favorite while on steroids, so that helped to calm her down. The weekend went okay. Kennedy and Austin went to Uncle Mark and Aunt Judy’s on Sunday so Keith and I could have a nice break alone! Imagine that! Kennedy only had one melt down (over BBQ potato chips??) but Uncle Mark was able to devert it by giving the puppy, Waffles, a bath. That was enough to change her mood completely. We were so thankful for the time alone. We went to lunch, went to Fishermen’s and bought Keith some new raingear and picked up prescriptions at Walgreens. Not much excitement I know, but when you only get a hour of time alone a week-that was heaven! We picked the kids up and went to Kmart. Exciting, huh? The good news was we got Kennedy’s Halloween costume for next year for $1.56. Yes, you read that one right-it was $24.99 regularly. It was a steal! Of course, Austin could not decide this early what he wanted to be.

Austin had his last soccer game on Saturday. He rocked! He played goalie the first half and dove head first in to the mud to block a goal. It was pouring down rain and freezing and the DD Vipers still kicked butt! During the second half of the game, Austin played forward and got things done. He did get called on numerous tripping and shoving charges despite the fact that he was shoved and Centennial didn’t get called on. Sorry for my little vent. Austin is the littlest guy on the team but he takes no crap whatsoever! He did almost get in a fight and ejected from the game. Within a few minutes he shoved a bigger kid and then accidently flipped him in the air and the kid started following him and talking trash. While Austin would not start it, I knew he would not tolerate getting hit either. I got it all on tape and they almost ejected both boys for name calling. At the award/trophy lunch (at Old Chicago! Yum!), his coach called him “The Enforcer.” He loved it. But you know what they say, don’t mess with the little guy-ours is a firecracker! He then spent the night again with his best bud, Skyler, and they had a blast! Kennedy was jealous but she can’t do everything. She spent the day playing with her bestest friend and cousin, Emily.

Austin has the next few days off for conferences and Veteran’s Day so we had Emily stay the night and tomorrow we are going to the early showing of Chicken Little. That ought to be fun. Grammie wants to see it too so I’m sure we’ll get to go again! Kim and Skyler might be meeting us there so that would be fun for Austin and I. Better get lunch going!

A quick note, Thank you so much to Patti Torres for raising $230 for Kennedy at the 4H horse show in Douglas County, Oregon! We really appreciate everything!

Love-Peace-Courage,
Melenie

Well, we have started DI1. All systems were go on Tuesday; Kennedy’s ANC was over 1500 and her platelets were a whopping 440!!! That is at the top of normal range! She is still a little anemic, not enough that they can do anything, but has been for the last month or so. She had her lumbar puncture with intrathecal Methotrexate, Vincristine, Doxorubicin and they started her on steroids. It sure didn’t take long for the monster to return in our house. Kennedy does okay as long as she doesn’t have the first tempertantrum. Once she is set off, there is very little we can do to make it stop until she becomes exhausted. Needless to say, yesterday was VERY LONG. Today we are at Auntie Caryn’s and I think staying busy is helping. Tomorrow she gets her PEG injection so I’m not expecting a joyful day. She is doing well actually but I expect it to hit her sometime this weekend. She also started physical therapy yesterday. They are very concerned about her response to the Vincristine, especially because she has so many doses still left, and she has begun exercises at home. Dr. Norwood reminded me that until she is so floppy she is unable to walk or sit, they will continue with the treatment. They may also be testing her for a genetic disorder that causes leg muscle weakness in older adults, but kids who are pre-disposed will have severe problems with Vincristine. She has exercises to do at home because in addition to having muscles weakness, she also has very tight hamstring muscles and heel tendons. She has a sticker chart that she uses to mark off doing her exercises and also one for meds (now that she has to take the really nasty stuff). It does help encourage her along. Physical therapy will meet with her once a week for now and will be fitting her with leg splints to wear at night that will help stretch those tight areas. At this point we know that she will struggle with walking, we’re just trying to slow it down.

The kids had a fabulous Halloween. We went trick or treating with Caryn and her family and their friends, Doug, Kate, Ryan, and Bekah, around the neighborhood. Kennedy was determined to do as much as she could be herself and only slipped once. Afterwards though, she was completely wiped out. We drove with Caryn and Jeff over to Kathy’s (Jeff’s mom) but Kennedy had started a serious meltdown so we weren’t there very long. She cried and screamed and fought her seatbelt all the way to Leland road in Beavercreek-a good 45 minutes! I just want to thank God and Zoloft for getting me through this trying time. She did have a great time though. Kennedy was Mulan (Chinese warrior) and Austin was the infamous Captain Jack Sparrow from Pirates of the Carribean. They looked great and had so much fun in their Disney costumes. What little troopers they all were with Emily (a raggy witch), Ryan (a muscular Batman), Bekah (a sweet kitty cat) and our little stinker, Bing as a skunk! They all looked so great and it was the one time all day that it didn’t pour down rain. Talk about luck! They made out with plenty of candy and when we got home there were treat bags from our neighbors, Terri and Greg, as they were worried the kids would not get to trick or treat.

Austin is doing better. He isn’t missing anymore school and seems to feel better in general. He is very responsible about taking his medicine everyday, which is a big help for me. Last Saturday, he had the opportunity to play the goalie position. Keith said he did excellent! Only 2 goals got past him and only because they were over his head and out of reach of his hands. Only 1 game left! While he is disappointed, I am glad that as the weather gets worse, we won’t be spending Saturday mornings in it. He also stayed the night last weekend with his best bud, Skyler and had a blast. Kennedy wanted to go with him but he wanted some time with just his friend, so Emily stayed the night with us. I went scrappbooking, which I haven’t been able to do since Kennedy’s diagnosis, and over 2 days got 38 pages done in Austin’s book. Keith had the girls and I really appreciated the time away.

Okay, I’m going to leave it at that for now since I am on my sister’s computer. 🙂 Hee Hee! I plan to update more later this week.

Love-Hope-Courage,
Mel

While I know that this is Kennedy’s website, today is a very special day. Ten years ago today, Keith and I were married in Yakima, Washington. Ten years! Since October 26, 1995, our marriage has seen many trials including Keith’s drug and alcohol addiction, having our nephew Jay come to live with us and then after six years returning him to his mother, Laura’s (Keith’s mom) disabling car accident, my postpartum depression, both Keith and I returning to school, pregnancy loss, two children, financial problems, the list just goes on and on and through it all we have persevered-we have beaten the odds. Statistically we shouldn’t even be married anymore but our love for each other and committment to making this marriage work never waivered. When we got married we had made a decision that we would work things out and stay together no matter what crossed our path and it has been worth every trial. Sometimes I wondered how all these things could have happened to us over the last 10+ years that we have been together but without all of those trials, we would not be strong enough to weather our current storm and help Kennedy fight this battle. There have been times when we certainly did not like each other very much but we were always 100% committed to seeing it through and I can’t imagine my life now without him in it. He truly is the love of my life.

Ok, now back to my update about the rest of the family! Kennedy had her weekly check-up with the oncologist yesterday and there was both good news and bad news. The good news was her counts are looking great. Her ANC was 2020 and her platelets (while low) were 75 and should be on the rise. She screamed and fought both getting her port accessed and having it deaccessed. Even with her favorite nurse, Sam, there she still fought it with all the strength she had. She gets the week off from chemo and oral meds so she is very happy about that. Her hair is also growing back in (although she never lost all of it) and it is blond and silky soft. Of course, it may not stick around too long but it is so cute! As far as the bad news…the next phase of treatment is going to suck! Please forgive me but that really is the best word to describe it. It is going to be worse than the induction phase of treatment she initially received. She is also having severe constipation problems and we are starting her on a daily medication to help with that. Just adding to her cocktail! They are also very concerned about the way she walks. She has what is called “foot drops” that is caused by the Vincristine and it causes her to have an unusual gait. It has been progressively getting worse and the concern is that after 3 weeks of steroids (which cause muscles weakness and deterioration and makes her very tired and CRANKY) and 6 weeks of Vincristine, in a month she may not be able to walk at all. They have to push the Vincristine to toxicity before they can reduce or discontinue the doses because of its importance in treating High Risk ALL. If they push it too far, she may never fully regain all of her skills so it is a careful balance. We will be talking about options next week but until then she can not use stairs without assistance and must only wear her Soft Star Shoes. Please pray for Kennedy and all of us during the next phase.

Austin is cruising right along. Soccer is almost over (only 2 more games!) and he has done very well this season. He has made significant improvements and they are working more as a team this year. His head has healed up nicely and we don’t anticipate any more stitches or staples for a long time! We have been supplementing his education at home (by his request) and are working on history (War of Independence to the Civil War), science and literature. He is such a sponge right now that he can’t get enough information. I am so excited by his desire to further his education. He is having some sort of stomach issue though. He is having a lot of pain with intermittent problems so we are going to the doctor today. It has caused him to miss school and there is concern he may have developed an ulcer from stress. Imagine that! Stress? We certainly have none of that. He is very sensitive and emotional so we are concerned about him and hope that it is nothing serious.

*UPDATE ON AUSTIN*
I took Austin to see Dr. Skau yesterday and it was determined that he has acid reflux disease. It was no surprise because he is genetically predisposed to it and has been under a lot of stress the last few months. On top of all that, he has very bad post nasal drip which is also causing an over production of acid so he is taking Singular (for asthma and allergies) and Zantac. The doctor said it should take a couple of weeks for him to be feeling better. I’m just worried because he has missed a lot of school because of stomach pain. Pray for healing for Austin.

Love-Hope-Courage,
Mel

I haven’t updated since Kennedy’s birthday last week, so I thought I should get on it! Kennedy did fabulous last week. She processed her Methotrexate quickly and we were able to go home on Friday afternoon. We left her port accessed as she would need blood work on Tuesday and I felt it would be less traumatic to go home with it for a few days than deaccess, reaccess and deaccess again. She had some mucousitis over the weekend but overall did very well. If you haven’t read her “Rodeo” section, please do. Kennedy was the Rodeo Queen of the Boo Boogie Bash Rough Stock Rodeo on Saturday night in Albany and that link tells all about it, including the article from the Albany Democrat-Herald. Also, we had a winner of the BBQ so check that out too! I have been way behind on pictures but will post some soon.

So, the weekend went well. Austin had his appointment on Monday to have his staples removed from his head, thanks to mom, his flu shot and asthma evaluation. He did very well and didn’t even get upset over his shot. He was very impressed by his staples when Dr. Skau removed them and even brought them home taped to a tongue depresser. Because Kennedy was with her Auntie and cousins, Austin and I went out to lunch at Chuck E Cheese’s-ewww! germ utopia!!!-but had a great time and we won 400 tickets! There are only 3 soccer games left-much to his disappointment-and he has decided against wrestling this year. I guess it just wasn’t his thing. We have noticed though that he has been much more aggressive in soccer this year. Ever since he had his cheek split open in baseball, the boy has no fear! We’re also checking into PeeWee Rodeo for the next summer as he is very interested in that sport also. Much thanks to Papa for that. His love of bullriding has been passed on to our little guy. I see a rodeo future in store for our kids, whether we like it or not.

Tuesday, Kennedy had her appointment and it went very well. Her ANC was over 2200 (1500-11,000 is normal) and her platelets were 148 (140 is normal) but she was slightly anemic. Her counts however, are on the rise and we expect her to be fine by the end of the week. She only has her oral chemo at home this week and then she gets her much needed rest week before the next phase begins. We are so glad to be finished with our planned hospital stays. What a relief!

We did get 4 tickets to the Blazers v. Kings game this weekend so that should be fun. Otherwise it’s just a quiet week at home!

Please pray for our friends, Tyas and Becky Wilson, as they travel to Haiti to pick up their newly adopted son, Landy. This has been quite an extraordinary journey for them and there is so much excitement surrounding this trip and homecoming. They will also be spending time with Robenson and Christiane, two more children they plan to adopt, so this looks to be a very rewarding trip. Pray for protection and that things go smoothly as they finish up this adoption and start on the next one. Good luck Wilson family and we can’t wait to meet your new son!

Love-Hope-Courage,
Mel

Happy 5th birthday to our precious Kennedy! Today was truly a day of reflection…reflecting on where we are and where we started from on October 12, 2000. We laughed about how the first thing Austin did when he met his newborn baby sister; he licked the side of her face to see what she tasted like! For those of you who know my son, that should not come as a surprise. I was just remembering back the first time I saw her. She was all white and wet and utterly beautiful. We had missed that moment with Austin and my heart overflowed with joy at the sight, sounds and touch of her. After losing a baby between Austin and Kennedy, we almost didn’t have any more children. Yet, we knew in our hearts that God had meant for us to have a baby girl so we persevered through the fear and are delighted in our little princess.

Having a girl for me was just magical. When I first became pregnant, I didn’t even know that I wanted a girl-I was convinced that a brother would be better for Austin and Jay. As my ultrasound got closer and I allowed myself to rejoice rather than fear this pregnancy, my heart longed for a precious girl. I know, everyone says that a baby is a baby and gender makes no difference but Kennedy was as different from Austin as the sun is from the moon. From day 1 she required more interaction and communication. She was not just content to be held but insisted on developing a connection with everyone she came in contact with. My nursing relationship began as a struggle with her but we persevered and this helped to develop an unbreakable bond between us. Kennedy told me the other day that she wished I could be her sister-her twin sister! She was worried about losing her hair during treatment because then people would not say we looked alike. My heart has delighted in having a daughter. While I have a wonderful, deeply connected relationship with my son, my relationship with Kennedy is very different.

I told Kennedy when she was first diagnosed that I would never lie to her and that I would be by her side through the whole journey. This has at times been harder than I could have possibly imagined that day. We have had to talk about the possiblity of her dying and what that would be like. I have had to give her medication I knew would taste horrific and make her feel even worse. I have held her through excrutiating pain that I can not imagine. I have watched her body react to the hazardous chemicals that I allow the doctors to administer and through it all she looks to me for the strength to persevere; I however, find my strength to get through this from looking at her. Someone asked me how can I not be swallowed up by sadness and despair and I say that if I give up now, I’m giving up on Kennedy and that is NOT an option. My children are my life and they remind me that there is hope in the future of mankind. So, today as I reflect on Kennedy’s birth and her gift to the world, I am honored to be her mother and I pray for God to bless her in all she does. She will do great things in the future and every moment she is here, the world is a better place.

Happy 5th Birthday my dearest Kennedy-May joy and blessing follow you always.

Mommy