Courage for Kennedy – Journal


December 7, 2005

Category: Treatment – Melenie – 10:15 pm

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

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