Back in the water

If you’re familiar with the phrase “took the wind out of my sails”, then you’ll understand why I haven’t really felt like posting this week. I’ve been feeling that life has not only left my sails windless, but has ripped them off the masts, cut them into tiny bite size pieces, poured gas on them and set them aflame.

But I’ve patched a sheet together and the boat’s moving in the right direction again.

The funk definitely hits, it strikes suddenly and it strikes hard. After a week of worry over Peyton’s less than great reaction to chemo and steroids, then the constant barrage of bad news coming in about the precious kids around us, it was just a week of emotional overload.

First, Peyton is MUCH improved. The steroids are long gone, she is back to a normal appetite, she is capable of the phrase “No, I’m not hungry right now” and she went into her classroom this morning, not only without a fight….but WITH a SMILE! It was wonderful to see. She was anxious to show her teacher the homework project she’d finished, a heart that she’d decorated for Valentine’s Day and was looking forward to a fun day of play.

I had the chance to go to the hospital for a visit with Mathew Gliddon’s family yesterday. To recap what this brave young man has been through, he’s 5 years old, initially diagnosed with a high risk ALL Leukemia, he relapsed around Thanksgiving and they were working hard to get him in remission so that he could be relocated to CHOP (Children’s Hospital of Philadelphia) for a bone marrow transplant for which, MIRACULOUSLY, his baby brother was a perfect match. We were all broken hearted when word came last Wednesday that he had suffered a second relapse, his marrow came back positive for leukemia cells again. Before a choice could be made for treatment options to restart the induction process, Mathew had a bleed in his brain on Monday. The counts that I talk about so frequently are monitored because the chemo isn’t selective about what it kills off, taking the good with the bad cells. For Mathew, too many good platelet cells were being destroyed in the process of killing off the leukemia, leaving the ventricle in his brain enlarged and weakened. Even with frequent and repeated transfusions, they just couldn’t handle the strain and his brain began to bleed. I guess the ONLY good thing about that is that they were already inpatient so they were able to get care immediately after they started noticing the signs of unresponsiveness.

He had to have a stint placed on the right side of his head to drain out the fluid and to relieve pressure, but it became blocked and they had to put in a second one as well. Suddenly the first one began working again and now both stints are working to drain out the fluid that had built up around his precious brain.

Mathew has been responsive to his parents, able to express his basic needs and to obey physical requests. He shows definite signs of improvement, although they are small and the healing process is slow, I know that we are all hopeful for his full recovery.

Mat and Karen remain AMAZING throughout their son’s struggle. Although you have to know the pain is tremendous, there has to be the desire to just curl up and let it all fade away, they remain strong and vigilant that his healing is happening. Plans for further chemo and the bone marrow transplant are all on hold as they wait out the immediate concerns with the brain bleed, they must first get over this hurdle before they move forward with any of that. But I pray faithfully that with our continued prayer and support and the strength of their love and faith that they will see him through whatever God has in store for them. Please take a moment and [url=http://www.caringbridge.org/visit/mathewjgliddon]go their website and leave them a few words of encouragement,[/url] it will only take a moment of your time and it will give them the knowledge that so many stand behind them during their hardest times.

So, in light of that, can I pick up my droopy butt and get motivated and stop wallowing in my personal pity party? I mean, seriously, all it takes is some perspective to really shake you up and make you say “Oh yeah, right, this is what’s important.” Last night, Peter called me and was upset because he’d had a bad day at work, some things had gone wrong, other things had gone not-right and he was just harassed by the end of the day what-could-I-have-done-better syndrome. Not that I’m not sympathetic to his need to vent and that I don’t care that he had a crappy day, but all I had to say to remind him that there are bigger things in the world than not getting right memo out or crashing a computer was “No one died today.”

Don’t take that to mean that I will accept that excuse from my children when one comes home…perhaps your oldest child….maybe your 4th grader…whose name starts with an N…and has F’s on his report because he failed to turn in homework that he completed! Did all the work, but didn’t turn it in, therefore he didn’t get any points. I’m not going to stand there and let him say ,“No one died because I didn’t turn in my homework, mom.” But I will try to remember that there are bigger issues in life than missed homework, that in lieu of getting worked up and angry because of this inconvenience, I can take a breath and try to teach the lesson there is to be learned from this mindnumbingly irritating incident.

My very wonderful and inspiring friend Joanne Lee has made a commitment that just blows me AWAY! Her daughter Samantha was diagnosed with Leukemia and I am so thrilled to tell you that she is coming up to her successful end of treatment this spring. We cannot ever use enough of this kind of good news. Samantha isn’t a child who has breezed through treatment She’s suffered through tremendous pain and trauma, she’s older than Peyton so her awareness of what she’s up against has always been a factor. But she’s a beautiful precocious, compassionate and loving girl and we have had the wonderful privilege of getting to know her over the past year and half and her family has been dear to my heart.

Before Sam was diagnosed she always twirled her hair to go to sleep, so when her hair came out, her mom would sleep with her so that Sam could hold onto HER hair. I lose my mind if Pete grazes me in the night with his callousy, cold feet , and she lets Sam hold her hair in what I’m sure is a deathgrip all night long…that is LOVE. So, when Joanne heard about an event called St. Baldrick’s, she jumped on board with both feet.

St. Baldrick’s is a charity that raises funds internationally for COG based research groups for childhood cancer. These are groups that are bringing the up and coming treatment options, who are working to bring the better, faster, treatments and are working to bring hope to the children who at this point, are facing a future without.

St. Baldrick’s holds events where people commit to shave their heads in honor of kids battling cancer, it might be a particular child or all the kids in general. And we have a function in St. Petersburg on March 22. I got the word that a group of gentlemen from Banker’s Insurance have made this their charity, they have banded together and committed to being shaved and are currently raising funds.

Joanne has decided that in honor of Samantha, she too is going to shave her head. I am awed at this decision. I would love to be able to get over my pride issues and do it as well, but I have trouble imagining myself moving into a new area and trying to make friends with the “Britney Spears” ‘do. I can’t see it going over well. People here know me and would understand, up there it would be an interesting time trying to adjust my kids into a new environment while I’m the CRAZY lady with the shaved head.

But it’s not about me, it’s about Joanne and her phenomenal choice. Her passion for pediatric cancer research, the love she has for her daughter, the wholehearted way she knows she’s going to raise awareness and make a difference for all our kids.

If you can spare a few dollars to donate for Joanne’s efforts, please do so!! I want to see her far surpass her set goal, I want this to be an experience of her lifetime for a good reason. I love you, Jo!!!

f.r.o.G…fully relying on God
—Anissa