Courage for Kennedy – Journal


March 29, 2006

I HATE INSURANCE!!!

Category: General,Treatment – Melenie 9:23 pm

When politicians are working on healthcare reform to insure that everyone has healthcare…they should also consider the fact that many people who have healthcare have serious problems with it!!! I am so sick of them making my life even more difficult!

Today I received a phone call from Kennedy’s physical therapist letting me know that the insurance company had contacted her directly to tell her that she was not to treat Kennedy any longer because they were not going to pay for it! Not going to pay for it? Big surprise since they have paid NOTHING for Kennedy EVER! The hospital, clinics, doctors, day treatment, therapists, labs, etc. have been billing and calling them from day 1 only to be met with a tremendous amount of hostility and not only a refusal of payment, but they have avoided answering questions or helping in anyway possible!! Yet, we continue to send them $300 a month!!! We have filled out all of their required paperwork, called and spoke with them directly, submitted medical records for everyone for the last year and jumped through every hoop to no avail! I can’t stand this anymore!!!! I mean, when is enough enough??? I am overwhelmed just caring for Kennedy, trying to be sure Austin has plenty of attention and hopefully give something to my husband and yet Primary Physicians Care of North Carolina wants to give me one more mountain to scale! They are the MOST difficult insurance I have ever encountered! They preauthorize everything and then refuse payment. They call all of Kennedy’s providers and harass them over the phone and by mail. Our pt even asked them today if they talk to parents the way they were talking to her! She was totally shocked! Well, her and I have worked out a plan to work together even if Kennedy can’t see her and it will amount to being more vigilant on my part and work hard with her at home. Whatever it takes!

The world needs anger. The world often continues to allow evil because it isn’t angry enough. ~Bede Jarrett

Hope-Faith-Courage
Mel

Radiation…The Next Step

Category: Treatment – Melenie 12:13 pm

Well, since I just deleted everything I spent the last hour writing, let’s try it again only this time I’ll save it before I try and do something else!!! Ugh!!!

Yesterday we had our appointment with the radiation oncology team and while it did not go exactly as planned, it was informative. They had hoped not to have to sedate Kennedy, as her treatments will be only a few minutes each day…until they met her! After 21 days of steroids she was showing her worst side and was even screaming and fighting just because she needed to stand on the scale to be weighed. Because the second part of her appointment now has to be done in part with the anesthesiologist, we will be doing that on Friday. We spent 2 hours yesterday just going over Kennedy’s medical history since diagnosis (that is a novel in and of itself!) and discussing what would happen on the days she has radiation, possible short and long term side effects, and consenting to her treatment. On Friday, they will create a “mask� to hold her head in the exact same position for each radiation; she will have a CAT scan, x-rays, and full work up to prepare for her starting date of Tuesday, April 4th. It will be a few hours I imagine.

Most of what we learned yesterday only confirmed our worst fears and gave us new ones to worry about. The “good news� (if you can call it that) is that by radiation oncology standards, she will be receiving a relatively low dose that will probably cause minimal immediate problems for her. The prediction is that she will have a “sunburn� on her head as the worst problem. The long term side effects worry them much more because as I mentioned in my previous post, they are radiating Kennedy’s entire brain. Some of the side effects that Kennedy could have as a result of her treatment include: short term memory loss and problems with memorization concerning things like math facts, a whole host of learning disabilities and processing complications, IQ point drops of up to 30 points, cataracts that require retina transplants, damage to the pituitary gland that could cause growth and hormone problems, damage to the posterior or back of the eye and socket, vision problems, stunting of the growth of her skull possibly requiring surgery to correct, brain tumors as an adult (about 10-15% of kids with cranial radiation experience these 15-20 years later), hearing loss and some I just can’t pull out of my brain right now. You can imagine that this wasn’t the best news of the day. Some factors that put her at greater risk for these complications are: her age (her brain and skull are still experiencing rapid growth and this could have a profound affect on how this occurs as opposed to a child in their teens), the fact that she has already and will receive a greater than average amount of intrathecal chemotherapy that is also known to cause some of these complications, the fact that she is a girl (I know that is weird but for some reason they have been known to be at greater risk for some of these effects) and because they are largely targeting healthy cells. Many healthy cells tend to recover while leukemia cells are more fragile and will just die, but there is no guarantee as to how many or which cells will and can recover. It really is a wait and see kind of game. He said that he has seen many kids go on with few complications and others that always struggle after treatment. We are praying for healing for Kennedy with minimum side effects. I guess we should be thankful. With her initial white count at diagnosis, we were very fortunate she did not have CNS involvement as that requires higher doses of radiation to the brain and spinal column which has its own host of serious complications. What is hard to wrap my brain around is that we are mostly targeting healthy cells and going after leukemia cells we can’t find and don’t even know exist.

So why is it so important to do the radiation?? That is the question we have been asking ourselves for the last 10 months since we found out it would be necessary as part of her protocol. We even considered removing her from this study (AALL0232) and placing her on a protocol called Total XV from St. Jude’s which is similar but does not require radiation as part of treatment. By performing studies, they found that kids with high risk and/or slow response diagnosis were relapsing in their brains, spinal fluid and behind their eyes at alarming rates despite receiving chemotherapy. They added intrathecal chemotherapy in hopes that the circulating fluid would penetrate into these regions and wipe out leukemia cells. While this was true in many cases, there were still groups of kids who continued to relapse. At first they gave higher doses to all high risk CNS relapse kids with serious side effects and decided there had to be a better way to target only kids who needed it and find effective doses at lower rates. They began testing for what is called minimal residual disease (MRD) and found that kids with small amounts at Day 29 of induction therapy were more likely to relapse regardless of when they went in to “clinical remission.� Kennedy was one of those kids with trace amounts of MRD at Day 29. This not only warranted a longer, more intensive chemotherapy schedule but radiation to eradicate even trace amounts of leukemia cells that could be hiding out in the brain and behind the eye socket. For Kennedy especially, a relapse would be devastating. I do not in anyway want to minimize any cancer relapse and say that it would not be devastating for any family but her oncologists have made it clear that because of her recent round of VOD and the fact that her liver is still not functioning (and may never) normally she would not likely survive the necessary chemotherapy needed to obtain remission and prepare for a transplant. They have also confirmed that a bone marrow/cord blood transplant would likely cause VOD again in Kennedy and it would be fatal. At this point, her cure rate is 60-75% at best; a 1st relapse would give her approximately 30% and a 2nd relapse near 10% if she survived. We are unwilling to take any chances and know that her best chance for a cure is for it to happen the very 1st time. The most important thing is to give Kennedy the best possibility at living a long and healthy life. Yes, we are taking a chance with the intensive treatment and radiation but if we had chosen not to go through with it and she relapsed, we would always live with the regret that had we gone with the big guns that were offered we could have prevented it. It is true that her treatment almost killed her in December, but without treatment she would relapse within weeks and would no longer be with us.

So, are we happy about this? Not happy. Do we feel that we are making the best decision we can for Kennedy with all of the information available? Yes. Someone asked me early on how I can deal with pouring poison in to Kennedy’s body and I said it was because I will NOT give up on Kennedy. Sadly, it is a necessary evil for her to have a chance. I have tried in my journal to focus on those things that are positive in our journey with Kennedy but it is crucial to your understanding of what we are going through to know that with every medication we are faced with the possibility of terrible short and long term side effects. Not all but some are: permanent heart damage including the literal destruction of parts of the heart muscle, infertility, learning disabilities, a weak immune system, liver and kidney damage, permanent neuropathy, the development of other cancers as a result of treatment, muscle weakness, vision loss, etc. Not to mention that most children do not die from their cancer but from infections and complications caused by treatment. This is our reality but to do nothing is certain death for her. The cure rate in the 1960s was less than 5%-families were basically told to take their children home to die and they had very little time…less than a month. We have come a long way in our fight against leukemia but not without a price.

Okay, that is probably enough information for any one journal entry. Kennedy has physical therapy tomorrow and we meet again with the radiation oncology team on Friday. Tuesday she is scheduled to being radiation, have an LP with intrathecal Methotrexate, Cyclophosphamide and begin 4 days of Ara-C. She had her counts check yesterday and they believe that her counts may dip slightly but should be recovered by Tuesday to begin the next leg of treatment before maintenance. Maintenance…oh the sound of that word warms my heart! No, it is not the end of treatment but a much easier phase compared to what we have been enduring. It will continue until August of 2007 but will give us a least a chance to take a breath.

Hug your babies and pray for courage for our Kennedy.

If I had my child to raise all over again,
I’d build self-esteem first, and the house later.
I’d finger-paint more, and point the finger less.
I would do less correcting and more connecting.
I’d take my eyes off my watch, and watch with my eyes.
I’d take more hikes and fly more kites.
I’d stop playing serious, and seriously play.
I would run through more fields and gaze at more stars.
I’d do more hugging and less tugging.
~Diane Loomans, from “If I Had My Child To Raise Over Again”

Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body. ~Elizabeth Stone

Hope-Faith-Courage,
Mel

March 27, 2006

The Next Phase

Category: Fundraisers,General,Treatment – Melenie 9:50 pm

I know, I know…I said that my New Year’s resolution would be to stay more current on Kennedy’s journal. I have had the best of intentions but I’m sure that I am not the only one who has failed to keep up with my 2006 promises 😉 . The thing is, the longer I wait to update, the more I have to catch up on and the more I want to avoid it. Well, better get to it.

The Tuesday after her “short stay,â€? it was time for the next round of chemo. Once they start this chemo, it is no longer count dependent so even if she crashes they will just keep going. Because of the steroids though, her counts were very high for her, but would be in the normal range for all of us. I asked the doctor about that and she said that the bone marrow is forced to make healthy cells by the steroids, the steroids then kill the leukemia cells and then her counts crash completely at the end of the 3 weeks. This means that after we stop the steroids, her bone marrow will just stop producing cells and work to recover from the over stimulation. Kennedy will probably need platelets, red cells and will have NO immune system. In the mean time, she is cranky, cries, screams, doesn’t sleep and eats constantly. We know that it is not her fault and that it will end, so we try and be as patient as possible but it is difficult. Overall she looked good and her liver enzymes were under 100. Thursday she had physical therapy which I worried would be a disaster but she held out until the last 5 minutes before she broke down. I was very proud of her and Grammie treated us to lunch at Original Taco House…Kennedy’s favorite! She ordered a taco salad and a soft taco and brought most of it home after filling up on their homemade chips. Oh, we also spent some time helping Auntie Caryn and Uncle Jeff with the girls after her surgery. She had some not so fun complications that made recovery hard and long.

For the weekend we had a surprise visitor! Keith’s dad (the kids Papa Mike) arrived on Saturday with Tyler. Kennedy was with Grammie and Papa but was very happy when she got home and saw who was here. It has been months since we had been able to visit because of Papa’s work schedule and our inability to travel to Yakima, so this was wonderful. Keith even blew off his monthly poker game! That was a shock! It sounds like everyone in Yakima is doing well. Mike and Linda bought a new house with 5 acres and have spent a lot of time getting it cleaned up and moving in. Kennedy can’t wait until she gets in to long term maintenance and can go up and visit. Linda bought a horse from her cousin and Kennedy can’t wait to saddle up this summer. She also knows that the closer she gets to LTM, the sooner her Bailey girl (her dog) gets to move home and be with her. Papa was so busy getting out the door this visit that he forgot to bring Bailey with him but Kennedy got over it really fast.

We also had an extra kiddo! Our little Amber, Caryn’s almost 2 year old, spent the weekend with us! She is so much fun and really keeps us on our toes. We took her home Monday when we went to Auntie’s to help with the house and Emily so Uncle Jeff could work (and get a break!)

The next Tuesday, the 21st, Kennedy had her last dose of Doxorubicin and more Vincristine. Her ammonia is still all over the board and was over 100 again. Her enzyme levels are also high indicating that her liver is not at all happy with the drugs we are giving her. I’m just so thankful we do not have to repeat the 6TG again! We have to continue with the dexamethasone so Kennedy continues to be whiny and very difficult to deal with and very HUNGRY! She is back to being like a newborn where she sleeps in 2-3 hour stretches and eats day and night. Of course, this means Mommy doesn’t sleep either and because Kennedy is usually in our bed, Daddy doesn’t have much room or get much sleep. Thankfully, there is an end in sight! Because Kennedy is starting to have a lot of bone and joint pain, we spent the week pretty much at home. The highlight was Saturday when we went to Dollar Tree-the kids’ favorite store! We picked up some things we needed and coloring books for the clinic. Kennedy was very distressed when there were only 2 coloring books and they had virtually no pages that weren’t colored already. She actually worried about the other kids who would be disappointed with nothing to color so we picked up about 6 brand new books for the clinic playroom.

We also bought Kennedy some new journals as she taught herself how to write all of the letters of the alphabet. Why is this a big deal? We received her occupational therapy evaluation and she went from the 95% percentile to the 21% percentile in 10 months. Since her diagnosis, she has decreased bilateral coordination, visual-motor control, upper-limb speed and dexterity, balance and functional mobility and self-care skills. We are told by “expertsâ€? that these will probably be temporary but have heard enough from other parents that some may be long term. We are just now beginning to consider all the long term side effects of cancer and the intensive treatment, including radiation, that Kennedy has and will be receiving. They vary from minor learning disabilities to significant losses in IQ points. Other effects include a weak immune system (even after treatment), gross and fine motor skills lost that are not recovered and being infertile or having a difficult time getting and maintaining a pregnancy, especially as she gets older (30s-40s). It really is a lot to deal with and is only worsened when we know many kids who are having complications once they are off treatment and Kennedy still has a year an a half of treatment left! It seems that as time goes by (and I’m not sure if it’s because people are becoming use to Kennedy having cancer or become tired of dealing with it or just what) I have noticed that everyone else keeps going. Ok, not that the world should stop because of us or that people have the stamina to keep up with the enthusiasm that was there in the beginning, but it hasn’t stopped or become less intensive for us; in some ways, it has become more difficult over time. Our need for relationships and support has not changed. We are not used to this yet. I have tried to not be draining upon others, and I am sorry if I have, and perhaps this has given the illusion that we are doing great and our lives are back to normal. Hardly. I hate to think this is life of a cancer family. Our lives come to a complete halt while the world keeps moving and living. I still want to shout to everyone that “MY DAUGHTER HAS CANCER!â€? I was discussing with a friend about how I can’t believe that we are almost at the one year anniversary of Kennedy’s diagnosis. She remarked that the last year had gone by so fast and I thought, “No, it has been long, painful and slow.â€? Sure, I have gained tremendous blessing, spiritual growth and understanding of life over the last year but it has been very, very hard. Our lives are FOREVER changed. We see our lives as defined by before and after Kennedy got cancer. As much as I did not want to believe it would (and fought hard against it) we will be defined by this moment in our lives. I’m not trying to be whiny… really. We have made some dear friends through this journey, and saw relationships we valued fall away because of their comfort level or inability to cope, but for everyone around us life is returning to normal. I wish it was here. Many have remarked at my strength, and I know my strength comes from God, but what so many fail to see is me falling on my face in utter despair and grieving for those things that are lost. Many people would say we should be happy we have Kennedy (and my heart goes out to those families who have lost their beautiful and precious children) but I am still sad that she has lost her innocence about the world, that she will struggle to overcome difficulties in the future and just how deeply this will affect her future. While we want to be unique we do not want to be so unique that we are far outside the definition of normal. I did not want to believe that not being “normal” would bother me but I know it’s true every time we take Kennedy out in public and people stare or we have to explain why she is in a full blown rage because her medication wreaks havoc on her hormones and emotions and people think we are just terrible parents who can’t control our daughter or when she throws up in somebody’s office (and I don’t mean a doctor’s office either) and I have to catch it in my hands and look at their face. We are different and changed by what has happened. We will not go through life the same, naive to the dragons lurking in the shadows.

Tomorrow will be a long and emotionally draining day. We will spend the morning meeting with the radiation oncology team to go over the plan and discuss her treatment. Unlike with tumors, we are not targeting cancer cells but using radiation as a preventative of leukemia cells hiding or growing in her brain and central nervous system. They actually plan to target her entire brain. There are complications with radiating tumor cells and non-cancerous cells have been damaged that surround the cancerous tissue…now imagine you are targeting healthy tissue to begin with…and the brain no less! You can imagine how I am feeling about this. The oncology team assures us that it is a lower end dose of radiation, but let me repeat myself…we are targeting HEALTHY cells. We know it annihilates cancer cells and we are targeting healthy cells in hopes that she will not develop pockets of leukemia cells in her brain. A relapse in the central nervous system is not good and very scary. They use to see a higher rate of it, especially in already high risk and/or slow response kids, and that is why they use intrathecal chemo and radiation in hopes of eradicating it. This is just a difficult time for all of us here…especially those of us who can comprehend the magnitude of this decision.

On a lighter note, tomorrow is our last day of dexamethasone!!! Soon, our little princess will be back to her normal, less whiny self. She does not have a feeding tube anymore…she bit a hole in it…and is gaining weight. We all hope she does not slow down significantly again and need another tube but we will wait and see. The new oncologist, Dr. Judy McGann, is wonderful and allowed Kennedy to be part of the decision making process which really helped and empower her.

Okay, I am emotionally exhausted today from all that is coming and also with dealing with Kennedy’s emotions (oh, and Austin is home for Spring Break) so I hope to be hitting the hay soon. Please pray, too, because I have been fighting an ear infection for over a week that even warranted a late night ER visit for pain management. I have not had time to see my regular doctor but hope that I will soon.

We really appreciate the warm words of affirmation in Kennedy’s guestbook and did you know that you can comment on specific journal entries? If you click the comment link in the right corner, you can leave messages for us! We would love it!

Also, we still have t-shirts and bracelets and please join us for the upcoming fundraiser on Tuesday, April 11 at Papa’s Pizza at 162nd and Stark St. in Portland! We will be there that evening but you can come anytime that day and let them know you are “Eating for Kennedy Duval� and ½ of whatever you buy will be donated to her Contribution Fund! We are still fighting the insurance (they have paid nothing since November 30th) and will be in contact with the Oregon Insurance Commissioner soon but your help is vital to our ability to care for Kennedy. Thank you to all who have taken the time to help with meals, donations, time, cards, phone calls, e-mails, messages, etc. We greatly appreciate all of the help and could not do this without you.

Ok, now I have to go to bed.

O bed! O bed! delicious bed!
That heaven upon earth to the weary head.
~Thomas Hood, Miss Kilmansegg – Her Dream

Hope-Faith-Courage
Mel

March 10, 2006

And the Fun Begins!!

Category: Fundraisers,Treatment – Melenie 11:34 pm

The steroid monster has returned!! It sure didn’t take long for our loving little girl to grow horns and her halo to burn up! We’re only about 3 days in and the whining is wearing on me. Thankfully, Keith, Austin, Grammie and Papa help with her and that makes it easier for me. At least her appetite is back!

We did get a luxurious night at Hotel Emanuel last night. Around bedtime Kennedy began to complain of pain in the area below her ribs on the right side. Since this is where her liver is, I became pretty concerned. I asked her more questions and found that her back was hurting in the same place too. She replied that it was not quite a crying face but it was a sad face. Because of her bout in December and the fact that she is back to intensive chemo as of Tuesday, I called the doctor and she felt it was important to check her counts. Knowing an ER visit would only cause more trauma, we did a direct admit to the 3rd floor. Kennedy immediately started crying; not because she had to get her port accessed, but because she was terrified she would have to go to the PICU. Despite reassuring her, she would not believe us until we were in her room on the school age unit and she saw her favorite nurse, Megan. We knew we had Megan because there was a bear on her bed with a diaper on it’s head. Now, for those of you who don’t know…Kennedy calls Megan “Princess Potty Pants” because Kenn was able to get her to wear a pull-up on her head like a crown. The name just stuck. This was very reassuring to Kennedy last night. Anyway, Kennedy has been suffering from post traumatic stress after her stay in the PICU and in her mind she just knew that was where she was going. In the last week or so she has begun to articulate what the experience was like for her and no wonder she was so scared! That is another journal entry in and of itself. Ok, they checked her counts and because her ammonia levels went from a normal 37 (finally!) on Tuesday to 150 on Thursday, we stayed the night for observation. Dr. McGann, the new oncologist, also ordered an ultrasound for this morning. Everything looked good on that meaning there were no pockets of fluid building up although her gall bladder looked irritated. The believe that her liver is probably irritated by the new chemo and steroids but not functioning at a point they would call “toxic.” Very reassuring I know! Thankfully this time they are watching it very closely so it doesn’t become irritated and shut down completely again. So, the ultrasound looked good and her ammonia level was 115 this morning and we were able to go home. They told us that at noon but you all know how check-out works around there…we left after 6pm. Kennedy was still scheduled to get chemo today and there was some confusion via the resident about one of her meds so things got held up in the pharmacy. All I can say is thank God for childlife and how do we get one for our own??? Melissa was able to distract Kennedy and play with her and found a doll Kennedy could give lots of pokes giving her a lot of power before her PEG injections today. She was able to communicate a lot of her anxiety about getting “pokes” during their play today.

Sorry it is so short but I am totally exhausted! I promise to find time this weekend to write and know that Kennedy appears to be doing well tonight. We are taking a proactive rather than reactive attitude regarding her liver this round and while it may mean more hospital stays, hopefully there will be less, “if we had only been here a few days ago” regret this time.

Love-Hope-Faith,
Mel

March 7, 2006

We Are Honored To Be Living With a Queen!

Category: Family,Fundraisers,General,Gratitude,Treatment – Melenie 9:42 pm

I wish I had a good excuse for not updating Kennedy’s site but I really don’t. After receiving her last dose of Methotrexate on February 24th we were blessed with a two week break! She still had to go to physical therapy on the 31st and a counts check in the clinic on March 3rd but otherwise we had a taste of normal life again. Oh, and thanks to my cousin, Amanda, in beautiful Calgary, Canada! My hands are back to normal and feel so much better! I love all the products! Thanks to those who have ordered wrist bands and T-shirts! We could not do all that we do for our family and especially Kennedy without your support.

Did I mention we have a queen in our midst?? It’s true. Kennedy is the Coos County 2006 Honorary Fair and Rodeo Court Queen! Queen Alyssa, Princess Rachelle and Princess Jenny blessed Kennedy with this incredible honor! Alyssa and Rachelle (and in spirit, Jenny) arrived with their entourage in tow to crown our girl with gifts that included 2 pairs of Wrangler jeans, rodeo tops, 2 sashes and a pin, boots, belt and buckle, hat and crown, picture of the court, honorary plaque and her very own stuffed horse. She loved it and could hardly speak!! It was a wonderful surprise and she stripped right down to change in to her new gear! These girls traveled over 4 hours one way to crown their queen and invited her to the Coos County Fair and Rodeo in July but also to attend other events with them in her “queenly� clothes. She is looking forward to a fun filled summer! She carries the picture and won’t even let us put it on her wall. That night we went to pizza with our family and she had to have all her get up on! She felt like a star! Thank you, girls for making our little princess part of your court this year and we can’t wait to see you again!!

One fun thing we did was go to Soft Star Shoes in Corvallis on the 28th. The team of “elvesâ€? were awesome! They absolutely spoiled us! Austin was able to pick out the colors and style he wanted and even helped them make his new moccasins. He was very interested in how they were put together and even came home and made his own shoes for us out of construction paper. What a creative mind! They worked, measured and came up with 2 styles that work well for Kennedy. They fit snug over her brace and yet are easy to get on and off. She also picked the colors (pink…no surprise there) and was able to help in their production. Or at least sort of…she really liked the play area they have set up and found the play food to be the best part of her day. So we spent a few hours there learning how they do what they do and they even showed us some new styles they are working on! They are adorable and everyone should check out their website soon to see them. The kids were hungry and exhausted but the elves even wanted mom to have a pair of her own. They are absolute heaven! Did I mention that all 4 pairs were donated by Soft Star Shoes? I keep trying to tell them that they are angels disguised as elves! They are a wonderful and make beautiful shoes for kids and moccasins for kids and adults. Everyone should take the time to check out their work and support local businesses in Oregon. They have been in business for over 20 years and are only 2 hours from Portland. Their link is on our site and we are even quoted there…twice! I also have catalogs so feel free to ask me too.

On our way home, we stopped at Willamette in Salem and saw some of my professors and friends. That was so much fun as most people haven’t seen Kennedy since this past summer or when she was first diagnosed. We spent more time than we had planned there but it was worth it. It made me realize how much I miss my “community� there and that returning even for 1 or 2 classes in the fall will be rejuvenating for me. They all invited me to bring Kennedy and Austin if I need to and I will appreciate the ability to work with them even when I can’t be in class because of the kids. We also stopped by the Willamette Store and I made the mistake of telling the kids to just put their stuff on the counter and have her start ringing it up because I was visiting. It wasn’t bad but I wondered where the pens, notepads and bouncy balls came from. What??? I didn’t remember any of those!

Kennedy did well in physical therapy. She has returned to her pre-PICU status so that is good and now she will only be going 2x per month for now. Part of this is how well she is doing and part of it is 3 weeks of steroids coming up. There is really nothing they can do with 3 weeks of Vincristine or steroids until it is all over and we see what damage has been done. It’s not like we can really even maintain her abilities just because of how the drugs work. As we have all along…we hope for the best and prepare for the worst. She does love her new braces and shoes and she is walking so much better.

Tuesday we went to lunch with Athena, Breanna and Mackenzie at Papa’s Pizza (check out the page under fundraisers that Papa’s Pizza is doing to honor Kennedy) That was so much fun for Kennedy. Just to run and play with her pals. The play area is deserted at lunch so she had a real blast. Her ANC was high and I just wanted her to have a good time. I had fun just hanging out and having adult conversation about something other than Kennedy’s cancer. I love all of the incredible families we have met but I know they will agree that feeling “normalâ€? and talking about everyday things once in a while is one of the best things we can do for our spirits. We picked Austin up from school and then headed out to Auntie’s to get the girls for a couple of days. My sister had to have surgery on Wednesday and I knew she would need that night and the next morning to put all the pieces in place. The girls were raring to go and so we packed my car with car seats, bags, pillows, blankies and babies and away we went. I told Grammie and Papa that I found these two little sad girls on the side of the road with no families. They just laughed! Emily thinks that is the funniest thing when I say that. Wednesday was an early day but we all survived and had a lot of fun. Thursday I went to see my sissy and got a reprieve, thanks to Grammie, and headed to the grocery store.

Our weekend was pretty quiet. We had Amber Saturday night and stopped by Auntie and Uncle Jeff’s on Sunday. Keith treated us and Grammie to Chang’s as we know that soon Kennedy’s ANC will be shot and there will be no more eating out for us. It was delicious and we felt ready to start the week. Oh, I forgot to mention that on Friday Kennedy had her counts check. Her ammonia levels were still above normal but everything looked really good and ready to roll on Tuesday with chemo.

Monday was uneventful as usual. Oh, how could I forget??? Many thanks to the kids at Oregon City High School for fundraising this past month (thanks, Tiffany for all of your hard work in getting it started) and for the youth at Mountain View Community Church (especially Becky) for the benefit concert this past Saturday. You guys are all so wonderful!! I don’t have all the numbers yet but hope to soon and will post them when I do. Tiffany is doing a presentation on Thursday about ALL and Kennedy and I are hoping to make it. Also, the drawing has been done for the Timberline packages raffled off at the Indoor Garage Sale and I will post those winners ASAP.

Okay…today. Kennedy’s counts were perfect for starting chemo (we knew that they would be) and even her liver was looking good. Her enzyme levels are still up but her ammonia was in the normal range. Does this mean we are free and clear? Sorry, no. Tricia, the nurse practitioner, reminded me that those numbers are with her supportive care meds and she has had no chemo for 2 weeks. They do not expect them to remain that great over the next 2 months while she is getting Delayed Intensification 2 but it was certainly the best place we could be going in. She had her LP and intrathecal chemo, her IV Vincristine and Doxorubicin. She was scheduled to start 3 weeks of steroids (run…run for the hills!!!) but there was a problem with the pharmacy and prescription so we had to have the oncologist straighten it out and she will start tomorrow. Whooo…one more day before the nightmare begins. We do have dates for radiation and a full-plan now so check the DI2 page under her treatment schedule. Because she is scheduled for full cranial radiation, she would not have gotten the 6TG anyway so they are doing nothing to replace it. Kennedy is having some problems with runny, crusty eyes and nose but the NP thinks it is because she has very few eyelashes or nose hairs to keep the dust, germs, etc out and therefore, more fluid is needed to keep them clean and clear. She also has a rash under her tape on her NG tube so we switched to one that is more hypoallergenic. Her skin is so sensitive that it begins to break down from the constant wearing of tapes and bandages. Overall, she is doing well and is in the best place for starting a re-induction type therapy. She is doing absolutely fantastic compared to where she was a few months ago. They are finally breathing a sigh of relief and sharing how close she really was to dying at Christmas. They have collectively agreed that telling us would not have helped and they were holding on the slim hope as much as we were. I’m really struggling emotionally with this. I absolutely trust that God is in control and has a plan but losing Kennedy is not my plan. I am amazed at how close we can come to death’s door and still be pulled back. Kennedy is suffering post traumatic stress from the experience so emotions are constantly being scrutinized and in our face lately. When does the horror of cancer ever end?? Isn’t it enough that we have to deal with the whole cancer thing? Why are there more effects that just keep hanging on? And guess what?? We still have 1 year, 5 months and 12 days left of treatment if things go “according to plan.� We may be almost to the end of the worse part, but we aren’t even half way through! Then we have another 5 years of frequent doctor’s visits (every month the 1st year, every 2 months the 2nd year, every 3 months the 3rd year and then every 6 months for years 4 and 5) before she will only need to go every year. 6 ½ years before they will say she is “cured� if she has no relapses. She will be almost a teenager!! Sorry, this is not my cheeriest entry…it must be the day.

This is supposed to be a place to write about my feelings and by the time I write about what we have been up to I’m ready to be done. Maybe tomorrow…tonight I’m exhausted and I know I have a busy day planned playing with my nieces and taking care of my sissy. It will be a nice reprieve and a chance to regroup and think about where I’m at and where I’m going. If I wouldn’t let so much time pass…I wouldn’t have quite so much to write…I would have more time to write about where I’m at. Today…I’m struggling to get my footing. I know that the ground I walk on is solid, but my feet are tired and slick. Today is just not my best day. Please don’t tell me that I am taking on too much, you know exactly how I feel (unless you possibly can) or that I should “lighten my load.� I know that I am doing exactly the things that God would have me to do in this moment but I have a right to sometimes feel like the burdens I am carrying are heavy. God will bless us for our faithfulness in this walk but as we are refined in the fires, it can be painful and difficult to bend. After all, He could never call us to work HIS miracles if we could do it all on our own and of our own power. We are NOT miracle workers except by His hand working through us. It doesn’t mean it is easy or fun or painless but the rewards are greater than all the monetary riches everywhere. Today is just not as pleasant as I would like.

Love-Hope-Faith
For without these we would have Hate-Despair-Darkness

Mel