Courage for Kennedy – Journal


July 5, 2006

Day 51

Category: Treatment – Melenie – 10:38 pm

Yes, we are on day 51 of an 84 day cycle in LTM and LOVING it! Kennedy is handling the meds well (especially considering how difficult the first year is) and seems to be cruising along. Her hair is growing back in! She has very dark eyelashes and much thicker eye brows (not bad considering she had very small, thin eyebrows like her mother before she got cancer). Her hair is much thicker and she seems to have a lot more of it. Of course, it is only about 1/4 inch long but she has been bald for the last 8 months! Up close it looks very blond but when you see her at a distance, the area where her hair is looks dark…hmmm…not sure what it is going to do yet. Everyone EXCEPT Kennedy hopes that her hair comes in curly. There is a very good chance since her father, both grandfathers, brother, nana, aunt Amy and auntie Caryn, and many others have curly hair. For those who did not know Kennedy before her diagnosis, her hair was in a chin length bob cut, very thin, fine straight and light blond. She was, however, born with a beautiful head of auburn hair much like her brother’s. We’ll have to see! I’ll get pictures posted if I ever figure out (and have the patience to download them on dial-up) PhotoBucket! Grrr!!! I know that everyone would love to see photos of our trip but I am having a pain of a time getting them loaded to the site. I may just give up and put them on a disk for Becky. She doesn’t have to fight dial-up and she is VERY computer literate. Thanks, Becky, for all you do! I mean, if I had just asked her first, I would have had all my pictures in chronological order in a few minutes instead of spending hours trying to rearrange them only to have the computer put them back in the wrong order!!! I love my computer but this week it has driven me almost to the point of taking a hammer to it! Ok, not that bad but I’m just not feeling very good being outwitted by emachines and AOL.

Well, other than that…we had a very relaxing 4th of July. Somehow that sounds like an oxymoron but it’s true. We had the Wilson family over for a BBQ and let the kids have a TON of sparklers. Between those and the pop-its, they were thrilled. Our neighbor must have gone across the river because they provided a beautiful fireworks display in the sky above their house. Thank you, thank you! After 4 days of the absolute extreme fireworks in Disneyland, we were fireworks-ed (is that even a word???) out. It was fun and the kids crashed as soon as their friends left…so did Keith for that matter 🙂 Other than that we have been pretty much laying low. Kennedy has her next clinic appointment and IV chemo on Tuesday…because we are not going all the time anymore, it causes a lot of anxiety for her.

Oh, on a good note, Kennedy is going to return to physical and occupational therapy! As many of you know, she has really struggled and lost many of her skills including her strength and balance and with our horrible insurance (Primary PhysicianCare) she was not able to get the care she needed. Well, those days are over! OMIP pays for 60 visits a year! We do have a $500 deductible (I think we may have already met that) and then it is 80% up to $1200 out of pocket, then they cover 100%!! That is such good news! We are hoping that there is a way to work out the previous bills (December through May) that now total over $400,000 as some are beginning to head to collection. We are doing everything we can to buy some more time but that is A LOT of money. That is my biggest project right now. We do NOT feel that the Lord is calling us to file bankruptcy so we are leaning on Him to provide a solution however He sees fit. I’m just continuing to walk it out if faith. After all of this, I realize there is NOTHING to fear when we follow Him. It sure isn’t fun though.

And, I am returning to school this fall. This is the first year that I have not been excited to go back. Please, no offense to those professors who read this, it is just that I want so much to be with my family and moving ahead with the plans that the Lord is sharing with me. I need to take 3 classes or lose my substantial grant and scholarship money so that is weighing heavy on my heart. When I pray and spend time with God, I know that this is what He would have me do but it isn’t on my agenda…of course, none of this was and it turned out to be an abundant blessing. The good news is that I will be able to graduate next spring and then can do the work that He is calling me to do. I will be home with my family as much as I would like and will be serving Him. Who could ask for more?

There is one thing I know I need to address. Not only am I feeling it in my life but in reading other families blogs and in talking with other parents there is an overwhelming feeling that so many not in the thick of this experience seem to think that when a child is in remission that the trouble is all over and we are just moving back to our pre-cancer normal. I have to speak for all of us and say that we can NEVER go back to our pre-cancer normal. Not just because our whole perspective has changed dramatically but because we are still in the thick of dealing with cancer. Kennedy was in clincial remission by day 15 of treatment (May 22, 2005) but as you all know, it only got harder after that. We saw NO RELIEF until exactly one year after she was diagnosed and are still dealing with cancer every single day. Sure, Kennedy, looks and feels much better than she has in a long time but there are many things you can’t see with your eyes. She will not be considered cured unless she does not relapse before she is 12 years old…she is only 5 1/2 today. Once she is 12, she will still see an oncologists once a year for the rest of her life. Before she is 12, she will see the doctor as frequently as once a month or as little as once every 6 months. The long term effects of cancer treatment and cranial radiation are staggering: drops in IQ, short term memory loss, learning disabilities, hearing loss, cataracts requring retina transplants before the age of 18, seizures, they are easily distracted, they have slow processing speeds, damage to the heart muscle, heart muscle tissue scaring which can lead to congestive heart failure, irregular heartbeats, infertility, problems with tooth development and cavities, chronic muscle weakness and pain, decreased reflexes, unsteady walk, future cancers (for Kennedy in particular-brain tumors from radiation), poor nervous system function, scarring of lung tissue, etc. We won’t truly know the extent of possible effects until 2+ years after treatment ends. True, many kids grow up with no residual effects but many don’t receive as intensive treatment as Kennedy has and as many others have had. Many times, Kennedy’s chemo has been pushed to the point of toxicity…times when she could not walk, could barely sit unsupported and no one will ever forget what happened in December. No one can tell us whether or not Kennedy will ever have a normal functioning liver. Statistics mean nothing when it is your child. I know several families right off the top of my head who are dealing with many complications despite the fact that their children have been off treatment for some time. I am so thankful that Kennedy is here…I can’t sing the praises enough…but it is too early to assume that our life is “back to normal.” Things are better, easier but very different than the typical “norm” that we had before cancer and the road is still long. We are moving forward but we know that it “ain’t over til it’s over.” So we rejoice in the blessings we have today and plan for the hard work still to come. I haven’t even began to touch upon all of the emotional stuff for Keith, me, Austin and Kennedy…many, many parents have post traumatic stress issues, relationship/marriage problems, mourn the loss of friendships, overwhelming finances, anxiety and for the child who feels forgotten there lies years of healing and as you can imagine, there is emotional healing needed for the cancer child who has lost not only the innocence of childhood, but also years of their life spent in hospitals and away from doing the “norm.” We are doing fabulous in light of all of this and feel very fortunate but please remember that we still face the dragon, his effects and the fear that he could some day rear his ugly head again. To those families who have lost their children…not a day goes by where they do not think of, love and miss their babies. Not a day goes by that we don’t think of your babies and are thankful that their stories touched our lives.

“In war, there are no unwounded soldiers. ~José Narosky”

“The appearance of a disease is swift as an arrow; its disappearance slow, like a thread.” ~Chinese Proverb

“The greatest oak was once a little nut who held its ground.” ~Author Unknown

And last but certainly not least:

“The race is not always to the swift, but to those who keep on running.” ~Author Unknown, in reference to Ecclesiastes 9:11, “I returned, and saw under the sun, that the race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favour to men of skill; but time and chance happeneth to them all.”

And one from me:

“Hell hath no fury, like a momma fighting the cancer dragon!”

Faith-Hope-Courage-and most importantly Love

Mel

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