Courage for Kennedy – Journal


March 29, 2008

We’re Still Here…

Category: Treatment – Melenie 11:03 pm

We’re just rolling along at break neck speed. You know…same old day…same old grind. Actually we have been passing around the bug that seems to be crushing the NW. Grammie had it for several weeks and the rest of us have managed to only have it for about 10 days with Austin and Keith being the last to get it. It was weird, though, Kennedy had her first post-port-removal fever and I had no idea what to do with myself. No hospital stay and not even a trip to the clinic. We did go to the pediatrician though…fevers still bring on lots of fear. We’re not sure why she had a fever but it seems to have cleared itself up.

She had her 7 month post treatment check up and it went well. Her counts are normal and the best news…she is not developing early. That was quite a scare for us! We have decided (after much prayer and contemplation) not to test for Charcot Marie Toothe. It would NOT change her treatment in anyway or give us any sense of direction. We may decide to persue it in the future, but for now we are moving forward on our track. There was a mix up in the orders about drawing to check her other immunities (probably zilch) and I would not put her through the trauma again of having a blood draw so we are doing them next time. The truth is that we can not immunize her until October (except in dire emergencies) so it doesn’t matter when we do it.

We also got the results of her PT evaluation and it was as we suspected with her scoring between “less than 4 years old” to about 4.5 years in her gross motor skills such as: running speed, agility, balance, coordination of the upper limbs with the lower limbs and strength (arms, shoulders, abdominal and legs). Her new AFO’s came but they did not make the bottom strap long enough so we had to reorder. Hopefully they will be here soon. We have also come to a point where finding “cute” shoes has become difficult. Kennedy’s feet have grown so much that Soft Star Shoes can no longer provide shoes for her (custom made!). We are so sad but thank them TREMENDOUSLY for providing Kennedy with the most amazing shoes for the last 3 years. Please check them out and I highly recommend that feet of all sizes try the moccassins…they are to just AMAZING! Tell them “Kennedy” sent you! They will be thrilled 🙂 So…off to the mall we went today to find some…we haven’t been to the mall since Kennedy was 5 so this was quite an adventure! We found 3 pairs of shoes including sandles and tenna-shoes that will work fantastic! And to boot? They are just adorable! Kennedy is very excited now to where her braces 🙂

So, why haven’t I updated? I am just swamped in school work. Kennedy still has a minimum of 3 appointments a week and homeschooling and the kids’ classes and the work around here and everyone has been sick and lots of school work including midterms. Ugh! I have a confession to make…if I was not just 3 class short of graduation…I would quit. School just sucks me dry. It takes time away from all the things that are important to me…taking care of my family. I know it did this before Kennedy got sick but now I hate it! My house suffers, homeschooling suffers, the training of my baby horses suffers (lack of time) and every relationship I have suffers. I spend a minimum of 9 hours just driving to school for sometimes less than 6 hours of classes. With gas prices, that translates to nearly $100 a week in gas! Never mind that I have on average 18 hours of homework a week and I have to finish and present on my Carson in less than 3 weeks! I just hate it! Kennedy needs more in her home program but I can’t seem to find the hours! Do you know when I get the most homework done? Between midnight and 4am…so when do I sleep? I try to catch some sleep between 9pm and midnight and again from 4am to 7am but the lack of REM sleep is killing me. I tried to start drinking coffee but my acid reflux put a quick stop to that! So, I have about 6 weeks left of this term and I am counting down every single day. Anyone who knew me prior to Kennedy’s illness would be shocked at all I just said. School was my life and it was a means to happiness. Wow! I have come so far. Now, it’s just about finishing…getting my business started…and raising my family…not necessarily in that order 🙂 I could really use prayer for this…I am just struggling so bad and am exhausted.

Ok, one of the main reasons and probably the most important that I needed to update NOW is we need big time prayers for another cancer family. It seems relapse is in the air and it has hit a family we care about very much. Please, please check out Rebekah’s website and pray for their family. She was diagnosed with Ewing’s Sarcoma about a month before Kennedy was with Leukemia and we spent quite a bit of time with them in the hospital. Her parents have been volunteering with Candlelighters and reaching out to other cancer families (despite all their struggles with post treatment effects and they had a MAJOR house fire and are still not living at “home.”) at both Doernbecher and Emanuel and now they will need us. I will keep you posted.

Also, please remember Gage as well. He is once again fighting Ewing’s after also fighting treatment induced leukemia and having a bone marrow transplant. They have finished their 2nd round of chemo.

There are so many families fighting that we care about but my heart and prayers are heavy with Rebekah and Gage tonight.

One may go a long way after one is tired. ~French Proverb

Perseverance is the hard work you do after you get tired of doing the hard work you already did. ~Newt Gingrich

When the world says, “Give up,”
Hope whispers, “Try it one more time.”
~Author Unknown

March 2, 2008

Thank you…

Category: General,Gratitude – Melenie 9:25 pm

I so appreciate all the moms who emailed me privately and/or posted in the guestbook to let me know that not only are my feelings totally normal but that they understand. Nearly everyone was the mother of childhood cancer survivor or patient. They really know this area best. They were also the ones I was most afraid of offending by my post. Thank you…thank you for not being judgmental. Thank you for “getting it.” Thank you for lending an ear and a shoulder. I really appreciate all of you…these are the moms whose children were fighting the same time as Kennedy. They are the same moms who are also dealing with the long term effects of treatment and forging ahead. Some are even moms still (or once again) in the trenches. I salute all of you.

This is still quite a journey. Not just the bump in the road we had hoped it would be but it is truly a marathon.

Some days I just feel on top of the world…so happy that she is here and rejoicing in her laughter. I love seeing soft, wavy hair adorning her head. To see her running and playing, no longer tied by an IV or feeding tube. Those are happy days.

Other days, I just wallow in the depths of pity. So sad for the childhood lost, the skills unachieved, the years of struggle ahead for her.

It really is a roller coaster. Each day that passes though, brings more and more happy days. We look forward to a future for Kennedy and hold tight to Jeremiah 29:11. We claim that for her, for us and for all the children who have fought, are fighting or are yet to fight.

Overall, it is a good, good life.

His grace is sufficient…