I’m certain that many of you think we have fallen in to the deep abyss, and maybe we have, but it is the abyss of Long Term Maintenance and we LIKE it! No news has certainly been good news for us and it really is a matter of just being very busy.
Kennedy was seeing the oncologist once a week to check her counts as they had been fluctuating but with her meds at 50% they seem to be holding steady in the “good” range. I agree with them when they say it is better to give “some” consistently than 1 week on and 1 week off of chemo. She is doing so well now holding her own, that she does not have to return to the clinic until her next dose of chemo and monthly IV antibiotics are due on October 4th! Oh, what will we do with all of the free time? Hmm…how about getting back to the business of life? She also had her first maintenance lumbar puncture and I was far more nervous about it than she was! She just cruised in there like it was no big deal and by that afternoon was running around like a monkey. Who would have ever guessed that spinal taps would become so routine! She is doing well and has the most beautiful blond hair growing back in! And just like she had hoped, it is very similar to her “pre-cancer” hair only it is much thicker! I am so jealous!
Austin has kept us on our toes too! We had back to back rodeos all of August and he did really well! In fact, one weekend, he made more than all other 7 rodeos combined! He has also started soccer so now our time is filled up taking him to practice and games. It is so good for him to have something that is all his and does not include Kennedy. For so much of the last year, he has had to deal with all of her needs coming first and now he gets to have his time and he LOVES it. We are really proud of all that he has accomplished this year and we are looking forward to some down time this winter for him to rest. He has been active in sports continuously since April. No wonder he eats so many carbs and stays so thin. We really are trying to put some weight on him but with growing and sports we just don’t stand a chance.
I’m sure the question on everyone’s mind is how am I liking school? Well, I wouldn’t know because I extended my leave of absence. Kennedy still has her clinic appointments but we have also added physical therapy and will be adding occupational, and hopefully, speech therapy. In addition, we are discovering that Kennedy is already facing some long term effects of intrathecal chemo and radiation such as short term memory loss and attention deficit issues. I thought perhaps it was just me and maybe I was blowing things out of proportion but her physical therapist even notices these changes from just 6 months ago. We knew that her liklihood of developing neurological complications was greater than most but we did not expect to see them occur so soon. It means lots of repetition, 1 step instructions, reminders and redirection. So we have a neuropsych exam coming up on Tuesday and will be anxiously awaiting the results. She also had an eye exam, as some of you know, she wore glasses prior to her diagnosis and her vision has improved so she no longer needs to wear corrective lenses! She was thrilled. We also had the opportunity to set a base line for her eyes as radiation will cause future complications. As part of her cranial radiation, the backs of her eye sockets and eyes were targeted putting her at risk for cataracts as a teenager along with other vision issues. Dr. Aaby told us for now she looks good and we don’t have to come back for another year. That was good news, too!
Kennedy is back in ballet! She started this past Tuesday and was able to step right back in where she left off! Her class has 3 other dancers ranging in age from 5-7 years and all at the same ability. Her ballet teacher did not know until after the first class that Kennedy has leukemia and was very impressed at how well she did. It was very emotional for me as this is the 1st time in over a year that she has been just like all the other kids. There was absolutely nothing that made her different. She danced the same, had beautiful hair just like them, was healthy, had red cheeks after dancing, giggled and laughed and played and she was just another little girl in a pink leotard and tights. In fact, with the exception of her cousin, I think this was the first time she played with other girls her age. It was just awesome! She will be auditioning for a part in this year’s Nutcracker and I will be sure and have more info regarding that! Could it be possible that we will be like all the other families again? Kennedy looks so great now that it is hard to imagine it has only been a short time since she was so sick. So, what will I do about school? That is a very good question and one I do not have an answer for at this time.
In addition to the above, we are homeschooling Austin and Kennedy this year. You read that right! For years we have talked about embarking on this journey and with His blessing have finally stepped out in faith. We start Monday so wish me luck! We had a plan but it was not God’s plan and now we seem to be in alignment with His will making everything a lot smoother. Austin is ready to roll and can’t wait to head out on this new adventure…Kennedy is excited too but we are moving a little slower and right at her pace. We are anxious to meet new families in the area and have heard about many fun homeschool activities so there will be more news there.
Wow! Could my cup runneth over any more? Well, in addition to all of this so far, we also have some great fundraisers coming up. We have been able to get Kennedy’s medical bills down to around $90,000 and they may come down even more. That is a huge improvement and all of your help has been greatly appreciated. On Saturday, October 7th we are having a Spaghetti Feed and Silent Auction. Please check out the link to the right for more information. In November, we are having a shopping day and more information will be sent about that, too! We are really excited. On Tuesday, September 12th we had another Pizza Party at Papa’s Pizza in Portland (say that one 5 times fast 🙂 and it went well. I don’t have the final numbers yet but if you missed this one, no worries, there will be another one in the spring. Thank you everyone for all that you have done, not just in providing funds for her medical and care expenses but in all the other things you do. I could not do this without your support. Thanks to Becky for renewing this site and helping me keep it together. Now, if only I would take some time to update, huh?
Wow! Another novel…guess it’s time to hit the hay!
Faith-Hope-Courage-Love
Mel
