Courage for Kennedy – Journal


October 26, 2005

Category: Family,General,Gratitude,Treatment – Melenie 10:05 am

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

October 19, 2005

Category: General – Melenie 1:04 pm

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

October 12, 2005

Category: Gratitude – Melenie 2:51 pm

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

October 11, 2005

Category: Treatment – Melenie 1:36 pm

Ok, I have got to get this thing caught up. I know, I know, I am so far behind (weeks even) that it is not even funny. I do apologize. It hasn’t been for lack of information though, quite the contrary. Things have been absolutely crazy and every time I think I’m going to be able to update-something else comes along to distract me.

For instance, the other day, I was working hard on updating this site (had tons of info already typed) when I got a call that kicked me off of the computer deleting everything I had spent over an hour writing! Oh, I hate dial-up! It turned out to be my mom-my dad was in route to Providence Portland ER with chest pain and dizziness. Turned out to be sinusitis but I didn’t know that at the time. Then, that afternoon, I was rough housing with Austin when I deflected his attack and he hit his head on the desk that is flush with my bed and cut his head open. I tried frantically to call Keith, eventually calling his boss to radio him and it turned out he was downstairs already! We took Austin to Dr. Skau’s office and he now has 2 staples in his head thanks to his momma! There goes my award for mother of the year!

Ok, back to the update. Where was I? Oh yeah…while Kennedy spent the week recovering from her first round of high dose Methotrexate, she was evaluated by physical therapy, occupational therapy and speech therapy. Remember I had said previously that Kennedy had lost all of her reflexes? Well, that means all of her reflexive muscles are weak and not working well. These muscles are those like your diaphragm which help project her voice and take deep breaths, the muscles that lift your foot when you walk, balance muscles, swallowing, etc. We had noticed changes but because we see her everyday they were gradual to us. My father in law however, noticed right away as he had not seen for several weeks. We are working on exercises at home and although she still has many doses of Vincristine left (which is the drug that affects her neurologically) we can hopefully slow down the process and help those skills come back sooner rather than later. Her ability to walk and run has been affected and department store style shoes only made this worse with their thick soles and extra material. While searching desperately for shoes that would be more like walking barefoot, I remembered the beautiful pair of Soft Star Shoes she had had as a baby. I checked out their website and much to my delight, they had them even in “big kid” sizes. We were in the hospital at the time so I had my mom order her two pairs to try and after explaining to them the reason why we needed them, they gave us a 15% discount! WOW! As if that wasn’t enough to love them, their located right here in Oregon (Corvallis to be exact-Go Beavers!) and after our first order came up with the “Kennedy Special” for future orders that give us 25% off shoes for Kennedy! What a blessing! Please check them out in our links as they have the most beautiful moccasins for adults too! Tell them “Kennedy sent you” when you talk with them. Okay, we now return to our regularly scheduled programming at the all Duval channel!

So, she had her evals and it turned out that speech was the area that brought the most concern. What a shock to us! We had noticed that her speech was more slurred, quieter and she was gagging more when she ate. She is having problems with voice projection, forming her mouth and tongue properly and some soft palete and throat issues. They gave us exercises to work on but Dr. Norwood doesn’t want us to focus so much on therapy that we lose sight of the goal-saving Kennedy. While that won’t happen for us, sometimes therapists can become consumed by their issues and forget what we’re all working on. We also put in a referral to the Early Childhood Intervention at our local ESD in the Molalla River School District as they have the same services (and more) for free and they can come to our house. It will also help Kennedy when she does begin school to have an Individual Education Plan (IEP) in place.

Next issue, Kennedy’s weight loss. As many of you know, we tried appetite stimulants when Kennedy lost as much as 15% of her body weight only to have an increase in vomiting. After not eating because of mouth sores and digestive sores, she was started on TPN supplements before Labor Day weekend (I think I mentioned this in my last long post). Anyway, TPN is not a long term solution-1) because it requires constant access to her Port which it was not designed for and 2) her liver and kidney must process it instead of her digestive tract. Dr. Norwood thought it would be in her best interest to have an NG tube placed. For those who have heard the term but do not know what it is, it is a flexible, plastic tube which goes through her nose, down her throat to her stomach to get nourishment such as Pediasure or KinderCal for kids. Because Kennedy can be difficult (really? big shock, I know!) her doctor had them place a larger tube that was weighted to discourage her from removing it. First off, she had to be sedated in day treatment for a procedure that normally is done in the clinic or in a hospital room and can even be done by a home health nurse, then when she woke up she was hysterical screaming that she was ugly. Talk about ripping my heart out! And if that wasn’t enough, it wasn’t in far enough and when she got back to her room, the nurse had to put it in further. This hospital stay had started off bad anyway (this was her second dose of Methotrexate) when she climbed behind her bed to get a toy and deaccessed herself. Because there was no Heparin in her line, it had to be reaccessed without any EMLA cream to numb the site. It was very traumatic. Okay, back to the feeding tube issue. She gagged uncontrollably through out the day and was very upset about the whole thing. This was on a Thursday and we went home, after much instruction, on Friday to begin our new routine. I was not on board with the whole thing but told Dr. Norwood I would play it up and trust him for at least the next 2 weeks. We were home only a couple of hours and I had disconnected her from her food to give her meds, but when she changed her shirt in to her jammies, she accidently pulled some of it out. I told her not to touch it before I called Dr. Norwood but before I knew it (and because she realized it would not hurt) she pulled it the rest of the way out. It was a done deal then. The next day the home health nurse called and said she could come out and put it back in-I just laughed. Not to be mean but when I explained everything to her she agreed that it would not be a good idea. At her next appointment the following Tuesday, Dr. Olson said that we would not be trying it again and put Kennedy back on TPN. She wanted to see if this was really a long term issue that would require the insertion of a G-tube (that would require surgery) or if it would resolve on it’s own. She just wanted Kennedy to get to 42 lbs. before the TPN was discontinued.

Let’s see…the 3rd round of chemo. After breezing through the second round with few complications, we thought we were in for a piece of cake. Boy, we should know better than that. Kennedy started out with an allergy issue that caused a runny nose and just feeling cruddy. It is possible that if affected her body’s ability to process the Methotrexate through as it took much longer this time. According to protocol, she needs to have less than 0.4 in her urine to go home but she stayed there for several days and didn’t drop below 0.2 (which is where the doctors really want it) until after Friday night. Dr. Norwood said that when it hangs on like that it can cause complications. The only other child he had seen that metabolized it well one time and then not the other had a severe lung disease which she does not have. He was baffled and concerned and that only caused more stress for me. So Friday night we were supposed to go home but I had this terrible nagging feeling that something was not right with her-I just couldn’t put my finger on it. Dr. Norwood had released us to go home at 8:00 pm but the nurse, Heather, talked him out of it and at 9:00 pm, Kennedy spiked a fever. Well, that meant blood cultures and broad spectrum antibiotics and at least a 48 hour stay. We ended up staying until Tuesday and Kennedy required a platelet and red cell transfusion after vomiting blood and four bloody noses in 2 hours. If it’s not one thing, it’s another! Whew! So we went home with another week’s supply of TPN. The week went okay. She had some mouth sores and felt all around cruddy but we survived. The following Tuesday, last week on the 4th, Kennedy was to return for her last round of high dose Methotrexate. She had horrific bruises and I just knew there was no way she would pass her counts. I even called the doctor the night before and he reassured me that she would be fine and he would see us in the morning. Well, don’t say that mother’s don’t know their kids. As you all read, she did not pass her counts and even required ANOTHER platelet transfusion. What I failed to mention in that was that there was great concern that because of her failed counts and rapidly dropping counts (that should not have happened with Methotrexate) we were worried about a possible relapse. Her doctors said if she did not pass her counts yesterday, we would have to perform a bone marrow aspiration to check for return of leukemia cells. It was a very long week to say the least. A relapse now would mean our only option is a bone marrow transplant. A very scary place to be indeed. But, NO FEAR, as she passed with flying colors yesterday! Her platelets which needed to be 75 were over 200 and her ANC (measures her ability to fight infection) needed to be 750-or half of normal-and it was over 3000! What a relief!

So, here we are. We did bring the trailer this time so Austin and Keith could at least be here. That has helped ease many of Austin’s anxieties.

That is certainly enough for now.

Love-Hope-Courage,
Melenie

Category: Fundraisers,General – Melenie 9:28 am

Join us in honoring Miss Kennedy this weekend at the Boo Boogie Bash Rodeo in Albany, Oregon!
Saturday, October 15th
At the Linn County Fair and Expo Center
2700 Knox Butte Road in Albany
Gates open at 6:00pm and Rodeo starts at 7:00pm

It will be a blast and a dream come true for our baby girl!

October 4, 2005

Category: Treatment – Melenie 4:15 pm

KENNEDY IS HOME DUE TO TREATMENT DELAY. Kennedy flunked her counts today and will be home this week. Her ANC had to be 750 to be admitted and her platelets at 75, however her ANC was only 170 (making her neutropenic) and her platelets were 21 and because she was bruising, she had a transfusion. The good news is she gets some more rest time but of course every treatment delay is scary. She also weighed in at 42.2 lbs. so she was able to discontinue the TPN and give her port a rest from being accessed. She has had it accessed almost continuously for the past 6 weeks and it wasn’t meant for that. She has a planned pre-admit appointment next Tuesday, October 11th and she is expected to stay. The bummer…she’ll be in the hospital for her 5th birthday! Ugh! It’s always something! I’ll catch everyone up later.

Love-Hope-Courage,
Melenie