Courage for Kennedy – Journal


January 5, 2008

We’re Finally Back!!

Category: Treatment – Melenie – 9:12 pm

Oh, to be writing again! How good it feels!

I apologize as I think this is the longest I have been away from writing on Kennedy’s site ever. We changed internet providers (no dial up for us! Oh, no…we are in the 21st century, baby!) and when that happened I somehow lost my password to Kenne’s site. I had just stayed on and not logged out and when I went back after changing, I could not for the life of me remember the password. My dear friend, Becky, is the administrator and we have both had such full plates the last few months that we never got in touch to get it fixed…but guess what, it is fixed now!!!

Wow! What have we been up to? Well, we finished rodeo season, Kennedy had a birthday, our niece, Devon, finished up chemotherapy and radiation, we had a great Thanksgiving and Christmas, Austin turned 11, we had soccer season, I went back to school, Kennedy returned to ballet and danced in the Nutcracker, we got 2 new baby horses (Hope and Running Deer)…and I’m sure there is much more.

Let’s see…how has Kennedy been…pretty good actually. She is handling being off treatment much better than I am. She LOVES not taking pills and her hair is growing so fast. I just have lots of anxiety about her leukemia returning now that she is not taking any more chemo or I worry about the long term effects (learning disablities, brain tumors, secondary cancers, cataracts and optic nerve damage, walking issues, reproductive health, heart damage, her liver, balance and coordination, etc.) However, for the most part…she is doing most excellent. True, she does have some issues with learning disabilites (especially with her ability to process information which is becoming most evident as she is learning to read), issues with fine motor skills and large motor skills (walking, dancing, running, balance, coordination). In fact, the topic of having her tested for Charcot Marie Toothe Syndrome has been discussed again as Kennedy is having no sign of returning reflexes and the nerve damage in her legs and feet is no improving…it even appears that other issues are showing up such as the fact that her left foot seems to be turning in ward. Her leg braces are too small but we are stretched financially and having a hard time figuring out how to afford new ones. Thank goodness it is almost time for our income tax returns although it is not how we intended to spend it. Cancer wise she is doing very good. Her counts and bone marrow are recovering and her immune system is at about 60% now. We will be checking what immunities she still has from her vaccines although we won’t be able to catch up until next October. She has several that she has already missed so I’m sure she’ll be thrilled about that.

She is growing so fast now, it’s as if she is making up for lost time. Her hair is FINALLY growing and looks great but it is not long enough to put up and too short still to look truly “girlish.” She had a wonderful birthday and was thrilled to have a “real” birthday party this year with bowling, pizza, cake and ice cream, friends and lots of playing and laughter. It was fantastic! She is also still homeschooling and while some days it can be just crazy, she is doing great. We took a break from occupational, physical and language therapy but her oncologist urged us not to take too much time off so that Kennedy does not regress at all. We also had her first post treatment echo and it was normal which was great. They remind us that many of the long term effects (brain tumors, heart damage, cataracts, etc.) will not show up for some time. She still has to see the Opthamologist but she hates it so I have put it off…guess I’ll have to get on that. For the most part…it is all good for her. It’s so great to see her feeling “normal” again.

So, it’s back to ballet. She performed in the Nutcracker in December and loved being both a mouse and little snow. The rehearsals and crazy schedule were exhausting but she enjoyed most of it. She did have one hard night where she just could not seem remember what she was supposed to be doing (having 2 parts was very difficult) and just got yelled at by the director the whole time. She held it together at rehearsal but the minute we hit the car she was bawling. I felt so bad and almost pulled her but realized that it is really a learning part of life and she did recover. Not only that, but she went over her parts again and again and did just beautifully in the performance. It was difficult for her to process so much and then remember all of it especially if someone else did not do their part. She had identified clues around her to remember and when someone messed up it confused her. She had a hard time keeping up on some parts but I know she did her best and after the one bad night, the director realized she was truly working as hard as possible.

Let’s see…mostly we have just been crazy busy. I returned to school and can not wait for it to be over. My heart just isn’t in it anymore.

Well, there are dishes to do and kids to run to bed…hopefully now, though, this will be updated more frequently than every 4 months!

Oh, how could I forget! Kennedy has surgery on Thursday, January 10th to have her port-a-cath removed. Please pray for her as she is not happy about this at all. She had her port put in when she was just 4 and truly believes it is part of her body. As far as she is concerned, we might as well cut off her arm! I know she will be fine once it is over but for now it is hard. Devon has her’s out on Monday so hopefully that will help Kennedy. Also, as she is still seeing the oncologist once a month (checking for recurrence) for the first year, she is not happy about having the blood drawn from her arm instead of her port. We will continue with the Emla cream so that should make the transition easier. Oh, and we had 2 ER visits recently. Not for anything big, she had a fever (b/c of her port we had to go) and for vomiting. Turned out just to be a bug both times.

We hope you all had a Merry Christmas and we are praying for a marvelous new year!

Mel

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