Courage for Kennedy – Journal


August 2, 2006

Two steps forward, one step back (but lots of fun along the way :)

Category: Fundraisers,Gratitude,Treatment – Melenie – 11:30 pm

Sigh…I sure hate it when I wait so long to update. I just keep putting it off because I know that it will take a while to catch it all up and this appears to only make things worse not better. We have been busy and I have a lot going on with me that make updating the site seem overwhelming, but since I can’t seem to get much sleep…it seems like a good time.

After being taken off chemo for a week, Kennedy’s counts recovered and she was started at 50% of her recommended dose. We had to return in a week for another counts check and with hopes of getting her back to 100%. We did have a blast that week and we even went to the zoo with Auntie Caryn and the girls! That was so fun. We hadn’t been there since the summer before Kennedy was diagnosed and Amber was a baby. Boy, things have changed. Kennedy and Emily weren’t afraid of the goats, and therefore did not need Austin to protect them, and Amber was not a baby but a very happy and curious toddler. She was wide eyed the whole time! We were there when it opened in the cool morning and were able to leave before it got super hot-and before traffic on the west side got just crazy! The kids were exhausted but really loved doing “normal” kid stuff. Hmmm…maybe we’ll get a family pass for the kids for Christmas 🙂 Then that weekend, Austin rode at Spirit Mountain in the horrific heat. He spent a lot of his waiting time helping out in the arena and loved it. We made sure he had his hat and lots of cold water and made him sit in the shade for the hour before his ride. He covered his steer but it was so hot there was little buck in the bull which made for a lower score. He didn’t care and clearing the 6 seconds gave him more confidence for this weekend in Newport where he will ride both a steer and bareback.

So, it was back to the clinic on Tuesday to meet with Dr. Olson for counts check. And they bottomed out again. Well, her counts were cruddy, although not bad, but her ANC was shot (320). I just kept thinking that I had let her ride horses on Saturday-even without a saddle-and I hoped she hadn’t gotten any “germs.” She was fine and seemed very happy to be off chemo for another week. Mom, however, was concerned! I asked Dr. Olson if she was worried about Kennedy being off chemo and she said that leukemia cells are far more fragile and if her marrow can’t come around to producing healthy cells she was confident that it was nothing to worry about. There is a lot of research going on to see if it is better to give more and have them bottom out, or just give lower doses more consistently. She even said that while they do not really want kids off chemo during maintenance, a low ANC was better than a high one. A low count indicates that they are sufficiently suppressing the bone marrow while high counts could mean resiliancy to the chemo. We still must continue with the Lactulose as Kennedy’s liver counts only stay close to normal with the higher dose of supportive meds; without it we are asking for trouble. More about future liver issues in another entry. Oh, Dr. O also decided to test Kennedy to see if she has the necessary enzymes to process the 6MP or if her body metabolizes it slower and we can give her a lesser dose and have the same results. We should know the answer to that question next week. I also asked her, as it has been the hot discussion on my ALL-Kids list, whether or not she would be considered cured at 5 years off treatment and have ths same risk as someone who had never had leukemia. She said that we like to think that BUT our oldest survivors are less than 40 years ot and they often have many long term complications or develop secondary cancers because of the overly intensive treatment they had… there are also very few of them. It wasn’t until about15 years ago that they were really getting good at curing leukemia so those “kids” are our baseline and some treatments have changed even since then. They are only making predictions-guesses if you will. The fact that there are more survivors is very encouraging and many go on to have little physical complications. There are however, those that had more intesive chemo, radiation and such who developed/have other issues. There are no guarantees. Now, as my mom said, there are never any guarantees about anything but that is not reassuring. We discussed having a neurocognitive exam for Kennedy to give us a baseline but also because she is having some short term memory issues. Sometimes she does fantastic and seems right on it and other times she will just keep asking the same questions and gets confused and angry with us. Dr. O said now was a good time to jump on it before she has anymore IT therapy. We can already see that she needs more repetition (and not just because she is 5 as we are seeing differences from a year ago) but also one step instructions as opposed to 3 steps-she just won’t remember what we said. I called today and was able to get her in on the 12th of September. There are benefits to being in treatment-they told us for non-oncology kids the wait is 6 months! This will at least give us a starting point-had I been clear headed in the early days I would have demanded one much sooner.

I became overly concerned about this after a discussion with other high risk leukemia kids whose parents chose more IT therapy as opposed to radiation to reduce the number of cognitive issues especially in girls and children under 6. Now, IT has it’s own complications (as you can imagine when you are doing routine spinal taps and injecting chemo in to the spinal fluid) and has proven to cause many of the same problems as radiation, but not generally things such as brain tumors and cataracts that have been complications of rt. When I asked Dr. O about that yesterday, she said that there is nothing out there that proves more IT is better or more effective than radiation. Especially for Kennedy who has had other complications, more IT would not necessarily be our best choice and was really not a viable option. As I have said before, Kennedy really is only going to get one chance. Of course, if she were to relapse we would NOT give up hope without trying another round but we understand that we are taking a very big risk of losing Kennedy to the many complications that would likely occur with another round of induction and intensive chemo or a bone marrow transplant. So, no regrets. I will NOT second guess our decisions regarding treatment-we have made the VERY BEST choices for Kennedy with the available information. I would rather deal with a life time of long term issues than have a life time without her. We just want to know where we stand and continue to monitor it so that she will have the best life possible, full of health and happiness!

Ok, more of that later, I promise. So, last weekend we went to the incredible community of Myrtle Point, Oregon for the Coos County Fair and Rodeo. Kennedy was chosen as their honorary court queen and had a blast fulfilling her duties! Many thanks to Coos County Fair and Rodeo and their court (Queen Alyssa, Princess Rachelle and Princess Jennifer) and their families who did so much to make us feel welcome and really pampered us! Kennedy rode an adorable pony (she still calls “Buffy” the dalmation pony 🙂 with a gorgeous spray of red flowers and a shiny red tiara in the local parade. She had been working really hard on her princess wave and she was ready! She delighted the crowd with her beaming smile and just radiated sunshine. We were also interviewed by the local news crew (Coos Bay/Roseburg/Eugene) but she wouldn’t say a word! It was the first time we have talked to the media and we were really caught off guard. As a rhetoric and media studies major, I was leary about allowing reporters to frame us as the “poor cancer family.” If they are going to tell her story, I want it to be a story of hope and faith…the story of a wonderful girl who is also a dancer, artist, animal lover, princess, little sister, preschooler, etc…not just a cancer kid. I hadn’t expected them to be there and had no response prepared. I do hope that if you had the opportunity to see it, that I did okay 🙂 Later, we fought her to take a nap so she would be ready for her grand entrance at that night’s rodeo and despite being cold, she looked fantastic! She was escorted by the court as they spoiled her rotten! So many thanks to everyone who made this all possible and thanks to the Myrtle Creek Motel for putting us up for the night and the Fortune family for taking care of our Bailey girl for the night. It was also a wonderful weekend for me as I finally had the opportunity to meet Patti! She attended the Boo Boogie Bash last October and brought Kennedy’s story to Coos County. Her daughter, Lupe, is the dairy princess and adorable! It was so great to finally meet you! It was so fun and we made some wonderful friends. We just can’t wait to see them again in September and we really hope to have them up to our neck of the woods soon.

On our way back, Keith and I decided to check out the Wildlife Safari. I was there when I was about Kennedy’s age and really didn’t remember too much about it. It was fun and it was neat to get so close to the animals. Pretty spendy though so we took lots of pictures to scrapbook with and the kids said they could wait to go again when they are grownup. It was just a lot of driving through with most of the animals in the shade away from the road. It’s a great thing to do if you are in town but not a repeat event like the Oregon Zoo.

Well, this Tuesday Kennedy had another counts check and as expected she recovered and is back on 50%. She is “scheduled” for an LP w/methotrexate and Vincristine next week but I won’t be surprised if she bottoms out again. She also has to get her monthly antibiotic, Pentamadine, so it will be a long day regardless. We were able to see Dr. O again and this time I had a few more questions. I had wondered what percentage of Kennedy’s bone marrow had been leukemia blasts when she was diagnosed. I, of course, hadn’t thought to ask at the time just because it wasn’t a high priority. Turns out it was 97% leukemia. Whoa. That is a ton! I then asked if it would have made a difference had we brought her in sooner (would she have been standard risk as opposed to high risk)…the answer was maybe. Her biggest concern with that would have been that Kennedy would have been under treated and probably would have relapsed…much worse. She was showing signs that something was different in the couple of weeks leading up to diagnosis, but nothing that would have even warranted a doctor’s visit. She did stress that had we waited even a few days, it could have had a very negative impact on the outcome for her. We also discussed Kennedy’s vision (she wore glasses prior to diagnosis but hasn’t since) and because of her cranial radiation to the optic area, she recommended we see a pediatric specialist who routinely seens children with brain tumors or leukemia…in NW Portland, of course! We see that dr. on the 5th of September. Kennedy also has 1 big cavity and 1 small one so we are working to get her into the dentists office to take care of that. They are just wonderful and are going to do everything to accomodate Kennedy’s medical needs. We’ll have to fit that in soon. We are also trying to get her back on schedule with physical and occupational therapy. Unfortunately, due to insurance problems, her OT evaluation has expired and we need to get scheduled for another one. We waited 3 months for the last one! Ugh! Did I also mention that I have to return to school in a few weeks? And, I have to go full time? I could just scream!!! No wonder I’m not sleeping! All the anxiety about caring for Kennedy’s needs and being gone so much again! Now, don’t get me wrong…she is doing well…we are just starting to deal with the complications of treatment and I do realize it could be worse, but I still have a hard time watching kids breeze through treatment and moving on while we are living with the prospect of a life time. They told us this would just be a bump in the road-they lied. It is not a bump…it looks like a mountain. I am grateful to have Kennedy and cherish everyday I have with my family but I wish that we could just finish up and move on as if life is normal. I really don’t want to offend the families that are doing so well and I don’t want to minimize the stresses you are dealing with off treatment, it just doesn’t seem fair. Life is not fair and I know that we are probably some where in the middle as far as difficulty but it sucks!

When our children are born we have hopes and dreams for their life. We invision a wonderful future and while we know that it will contain disappointments and heartaches we do NOT ever expect them to involve cancer. I guess I’m letting go of the life I had projected for her and instead am moving on to accepting that the picture could be a little different. Now, she can certainly go on and do all of the same things and experiences I had hoped for her…just with a different perspective…a different outlook…who knows…maybe a better, brighter, more appreciative one. I think that when you have something so life changing happen…so unexpected…you have an appreciation you never could have had before. We have a new love for life…a new passion…a new sense of fulfillment. No longer are we consumed with getting ahead and feeling as if we have to have more but the sense that all of this is an amazing gift…a gift to be cherished. It is my desire to live each day bringing quality to my life and lives around me. Ok, today while I was lying around in my pjs and wallowing in self-pity I was only radiating yuck but I will not stay there. Yes, I am overwhelmed by responsiblity…it doesn’t help that I had to pay bills yesterday either…but my life is rich and I am continually blessed by the people who are in it and by the experience of it. Speaking of…I am making plans for after graduation; plans inspired by prayer and conversation with God to have the chance to help bring quality of life to those around me. I am so excited but am waiting on His perfect timing to discuss them and get things moving with them.

Ok…fundraisers! They are coming up! MARK YOUR CALENDARS!!!

Tuesday, September 12th-Papa’s Pizza “Eat for Courage” event-ALL DAY!
Saturday, October 7th-Spaghetti Feed and Silent Auction-with really incredible items to bid on!
Saturday, October 21st-Shopping Day! Get a head start on the Christmas season!
TBA Annual Carwash!
TBA Texas Hold’em Tournament and Silent Auction! This is the one everybody has been waiting for!
TBA BBQ Raffle-Now is your chance to own YOUR state of the art BBQ!

I’m sure I have far more to say but I am exhausted. Please pray for Skyler Jones family as they deal with the loss of their precious girl. Also continued prayer for Joshua Brenneman’s family who is dealing with some very heavy decisions regarding complications from treatment. And for Kaitlin’s family as they too are dealing with some issues right now that would worry any cancer parent. And as always, pray for the many children dealing with cancer, whether on treatment or not, and their families and especially those families that are moving forward without their precious babies.

Oh, how could I possibly forget! Please pray for Austin this Sunday afternoon as he will be riding both bareback and steer in Newport at the youth rodeo! As always, pray for protection and strength! I will let you know how that goes next week! Also, if anyone would like to have an opportunity to watch him ride this year, he will be riding at the Polk County Fair on Saturday, August 12th in Rickreall just east of Salem. See you there!

“The future is called “perhaps,” which is the only possible thing to call the future. And the only important thing is not to allow that to scare you. “ ~Tennessee Williams, Orpheus Descending, 1957

“A preoccupation with the future not only prevents us from seeing the present as it is but often prompts us to rearrange the past.” ~Eric Hoffer

Faith-Hope-Courage-Love,
Mel

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