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Basi’s 6 sentences

Basi Perkins is a very special friend of mine, her daughter Kate has an Optic Glioma. She has been a constant source of encouragement, faith and support. She has an amazing gift for words and expressing what so many of us in the cancer world are going through.

She was recently published at Six Sentences. They publish 6 sentences of writing, many subjects, many styles. These was Basi’s haunting words about the changes cancer has brought into her ife.

“Too many Fridays have come upon us as casually as the Monday morning madness of rush hour. Long days spent at the hospital, standing by her crib, begin to blend one into the other, and like an avalanche, wipe out the rhythm of living, so that Christmas or summer can become the most ordinary and most dreaded of days. It’s always the same day, where the fluorescent lights and beeping IV pumps confound your circadian clock. “It’s Friday,” I said to the doctor, like I could let go, and realizing there was something to look forward to today, something good. Monday approaches with certainty to disappoint us and exhaust diminishing reserves of patience and endurance. Today feels like a Friday, at last. “

You can check out more of Basi’s writing here and at Kate’s CarePage site (SugarKate).

f.r.o.G.
–Anissa

Sweet Home Alabama

What I found about long road trips with a vehicle full of kids is this nugget of wisdom: It’s much like having a baby, definitely a labor of love and by the end all you care about is getting the kids OUT!

Truly, the kids did well with the trip, we managed to get up in just a little over 8 hours…Pete does it in 6 hours. It was a torrential downpour for half the trip and the road construction through part of it was miserable….Rachael says “Why don’t you just go faster?” Because the state patrol frowns on going monster-truck-madness on the Ford Escape in front of me.

But we made it, safe and sound and it’s awesome to be together. We’re in Valley, AL…feel free to look up the metropolitan area and check out all that it has to offer. Good luck with that search. It’s a sweet little town, tiny and very rural, but I personally find it fantastic that it has more WAFFLE restaurants than any place else on the planet.

Today we drove around and checked out the area together and Peter was able to show some gorgeous places he found and some properties we wanted to see. We’re out, trolling around and just seeing what there is to see and we turn a corner and THERE IT IS! I look over and I see a house that looks familiar…then we get to the perfect angle that the water tower is prominently displayed behind it…”Pete! Pete! It’s our meth house! That was our meth house, wasn’t it??”

Yeah, we got to see it in person….it was just what I’d dreamed it would be. Like an Extreme Home Makeover reveal! Only without the big bus, the people screaming and shouting OR the beautiful mansion…but there was that faint fear that we would break down and get stranded in that neighborhood. “Lock your doors, kids, and don’t make eye contact with anyone.”

We’ve been having a blast breaking in the Wii. I’m a little sore, the kids are showing their overall ability to whip my butt at any game and Rachael was thrilled to find out that she can bowl a perfect strike from the bathroom! Love that wireless. It is so cool, I’m thrilled that we got one and ALL the kids, big and little, are having a blast with it.

We don’t have much planned for our stay, we’re just planning to enjoy each other and this much-missed together time. I’m doing a little work to get Peter’s apartment in living order, he’s in the middle of a very Spartan life. I know that after I returned from Wal-mart today that it was the most food this apartment had seen at any one time. The kids ate dinner on an ironing board because Pete hasn’t gotten a table yet, but they found it to be an exciting adventure. It’s all good…there’s a Wii!

f.r.o.G…fully relying on God
–Anissa

Nathaniel’s diva moment

You really have to read the previous post for this one to make sense. Or at least have seen the newsclip from Action ABC (Oprah’s Big Give benefits Bay Area Children’s Cancer Center link).

Nathaniel’s response to the video clip was, “Hey! What happened to my part? I didn’t get any of my part in! It was all you talking.”

Yes, my big mouth got in the way of my son’s 15 minutes of fame. I don’t doubt he’s going to get another shot at his 15, but boy was he ticked off at me! Really, he did talk for a long time, described everything in detail with wide sweeping arm gestures, but nope, not a bit of that went in. Poor kid.

In some kharmic return for that, his first words…FIRST words….today when I picked him up from school were, “So, how DO people get pregnant?”

Shoot me! Shoot me now!

I just want you to know what a brilliant strategist my husband is. I’ll be loaning him out on a consultant basis if you need him to speak to any of your children about important life issues.

When I asked him what kind of answer he had for that question, I got this response:

“Not eating enough veggies and eating too much candy”

I guess that salad-birth control is all the rage in Alabama.

f.r.o.G.
–Anissa

When you’re least expecting it

The lemur was all about that “the world is my toilet” motto

Fast rides, food, water shooting from the ground, high-hung net paths, wild animals to be seen and touched and the chance to be on TV….Nathaniel’s dream day in a nutshell. We got to Busch Gardens early on Thursday morning where the kid participating got t-shirts (that were totally trashed by the end of day) that promoted the about-to-be-previewed new area of BG, Jungala.

Shannon and Jamie, two fabulous staff members from the [url=http://www.childrenscancercenter.org]Children’s Cancer Center[/url], were there to spend the day with us and just made it that much more fun. We were with Scott and Lilly, both cancer patients, and Devaughn, a sibling of a cancer patient like Nathaniel.

We spent a lot of time early in the day waiting. The kids were so wonderfully patient and understanding that there were certain things that had to be done before their fun could really get started, and I was so proud of them for not flipping out. Luckily, there was quite a bit to keep them busy while they waited for their turns on the rides. They got to hang for hours in the world’s coolest jungle gym…3 stories high paths, made of net and mesh, just dangling from the sky…they loved it! There was a water area that made the heat a non-issue for them, with waterfalls, shooting fountains and middle school girls in plaid skirts with wet tshirts…”Oh, mom, can I go get in the water?”

Yeah, sure you can, you suddenly raging case of hormones. Go, son.

We got to see the Tiger exhibit, 4 of the most amazing creatures on the planet, just lounging and impressing the masses by their sheer existence…but don’t we ALL know how that feels! Nathaniel got to get up close and personal with a two-toed sloth, some African millipede thing, a talking parrot, numerous snakes…“come touch it, mom!” Thanks, Busch Gardens, thanks a lot…and a fantastic close-up encounter with an orangutan. The orangutan building has this big square plate glass partition built into the floor, where you can look down into a hammock hung for the orangutan’s pleasure. As the guide is telling us that O…I’m getting tired of spell-check telling me that I spell orangutan wrong…loves people and will often come up from the ground to interact with the people watching from the building, here she comes strolling over! She climbs up in the hammock and proceeds to sprawl out just looking up at us from the hammock. I get the impression that it was a reversal of situation for her, she’s laying there thinking, “How cool, I love when my humans get some interesting people for me to look at! Wow, that one’s pretty funny looking, that one looks a little scary!” But the neatest part was when Nathaniel and Devaughn were putting their faces and hands on the glass and O responded by climbing up into the corner of the glass so that she could stick her hand up to the glass and touch them, putting her face right next to the glass to get as close as she could to them. It was AWESOME!

There was a good number of kids there, besides the CCC kids, from different schools and organizations. So, it was sheer chaos the whole time. Our kids got orange wristbands that told all the media who was present for the announcement and test-drive of the rides that they could feel free to talk to the kids for their broadcasts.

Besides the newstations that stopped the kids for reactions for their nightly newscasts, the local ABC affiliate that is covering and highlighting the CCC for Oprah’s Big Give (You want to go to the “videos” link and then to the “Oprah’s Big Give Benefits Tampa Bay Kids” link) was there to interview the parent/kid combos and to talk with us about what the Center does for our families and what it means to us.

Seeing as how there is nothing I’d like to see more than a CCC in every city there’s an oncology patient, I love the chance to talk to anyone about what phenomenal work the CCC does. What an impact they have on the lives of the children, their siblings, the entire family…the way they raise the quality of life for us…the emotional and financial support, the friendships that they work so hard to facilitate between the families themselves. I told ABC and I would tell anyone…are you listening, OPRAH!???…that the Children’s Cancer Center exemplifies what the Big Give is all about, when you talk about giving big, you can’t do it any bigger, any better, any more sincerely and compassionately than the CCC.

Oh, and of all the stories that are being submitted to Harpo Productions during the Big Give from all the charities involved, guess which story sparked the interest the most?? Just take a guess which one gave the “Wow, that’s really something” factor.

The tattoos. I believe, not entirely sure how it works, the tattoo story is going to be highlighted on a Sunday Big Give show. I’m actually going to get to be associated with an Oprah show and it’s for getting a tattoo. Mom, are you proud of me now??!!

It could totally be worse, Pete could be having a baby. Which would tickle the heck out of me, but I am not even going to go there. Ok, maybe I’ve already been there and had to pull myself back from THERE, but really! Really? Can you imagine the torment that kid is going to take? We are not talking about being short/tall or having any strange distinguishing feature that would open you up to the normal amounts of childhood abuse….dude, your DAD gave BIRTH! That child is so screwed.

Ok, did you like that passive/aggressive way of deflecting the interest off me and my tattoo and onto the baby-birthing man?

Anyway!

Last night was family group night and the CCC put on an American Idol competition with music and singing and the kids had a BLAST. My kids? Karaoke? What’s not to love? They all got up and sang, loudly and with enthusiasm. Peyton sang and shook her booty to “New Girl in Town” from Hairspray, and it was so darn cute I was lightheaded for a few minutes.

While the kids were practicing their best Idol performances, the parents went up to the big group room. THIS is why the CCC is amazing, they arranged for two families to be there to talk about their experience with cancer, which included a relapse and bone marrow transplant and how well their children are doing now. We got to meet Derek, a 19 year old who so bravely spoke to us about his initial treatment, his relapse, then his second relapse. He shared about the treatments, the post-BMT issues, his never-failing belief that it would work. Then we heard from Michael. Now, I’d met Michael before because he was often caring for us when we were inpatient at All Children’s Hospital. He just finished his nurses training and will be helping even more children now. I always loved when Michael was on duty because Peyton just adored him, he had a great relationship with the children and never failed to stop and take a few minutes to chat, no matter how busy he was. I found out why. He’d been there, on our side of the bed. His daughter was treated for AML Leukemia and when she relapsed, they did her bone marrow transplant there.

At a time when confidence has been shaken and we are all reeling from the news of the relapses of precious friends, it was so needed to hear these positive stories, to know that relapse doesn’t mean that your child will die. For some, relapse doesn’t end the way we pray that it will, but for others, we still hope and pray for a cancer-free future. It was a strong reminder that we don’t give up hope.

Then, out of the blue, I got another great positive boost today! I love how God always sends the messages we need to hear, sometimes we have to be willing to listen.

I had Peyton with me today because she slept lousy last night and was quite unpleasant this morning. I had 1000 errands to run in prep for our trip…still no packing has begun, but I’m not worried about it…and I needed to get my hair cut. I had planned to get it done, but had considered putting it off since I had her with me. I decided to give it a try, worse case scenario, I have lopsided hair from walking out mid-cut. My normal hairdresser was out sick, my back-up was on vacation, I took door #3 because I really needed the cut.

I get there and I’m chatting with Dana, which should have been a good sign, since we love the only other Dana we know. We’re talking about Peyton and the subject of her chemo comes up and how she has leukemia and Dana shares that her nephew was diagnosed at 6 months old. He was so critical because it’s very bad to be diagnosed under 2 years old. He suffered a relapse and had to have a bone marrow transplant, which his brother was a match and able to provide. He’s now 9 years old. She said that he’s small for his age, undergoing hormone therapy to induce growth…he’s sterile…but he’s 9 years old and is out of treatment for 5 years now! He’s alive and wonderful and that was tremendous to hear.

I’m just sitting there feeling like, “wow, my hairdresser? Is that the person you’re sending to lift up my spirits, Lord? Whatever works for me!” It could not have been the more perfect message at the most perfect time. Dana happens to live in Fishhawk in Brandon, her kids went to school with Taylor Arrington and her mother cut hair for Zack Tucker. She even recognized Peyton from some different newspaper things she’d been in. Could I have been more meant to meet this lady?

Pray for safe travels for us this weekend, we are looking forward to a great visit with Pete! I can’t wait to get there, messy apartment and no furniture not even mattering. And not just because of the Wii, although that pretty much rocks. I am just looking forward to some quality time with Pete and I know the kids are seriously excited about waking up with Daddy.

f.r.o.G…fully relying on God
–Anissa

What a day!

I have a great post to give about the day that Nathaniel and I spent at Busch Gardens and then our family night at group, but in all honesty, I’m so tired right now I’m not entirely sure how I’m upright to type at all.

I have tons of pictures and the kids were so much fun.

Here are some news clips from today”

Fox 13 News, which you’ll see Nathaniel and a surprise for us, Cody Bertoch was there getting interviewed as well. He’s right after Nathaniel giving his opinion of the new Jungala. After seeing the interview, Peyton didn’t say “There’s Cody!”…she said “There’s my boyfriend!”

The Busch Gardens website, there is a webcast of the opening announcement all about the attractions and animals….and if you’re patient enough to get to the very end, you can see Nathaniel, Scott, Devon and Lilly screaming “Jump into the Jungle!” at the very end.

There was apparently a good interview on one of the stations that I can’t find, but it should be one that will eventually go up on the CCC website, so when it does I’ll post it.

The Children’s Cancer Center is getting the newcasts related to Oprah’s Big Give that highlight some of the amazing things that they do up on their website. If you to the website and hit the video link, the second posted video starts about Demetri, one of our ambitious young friends and ends with a bit about the mom’s getting tattooed…guess who’s on there…grinning like an absolute fool.

That’s as good a post as it’s going to get tonight, I am absolutely beat!

f.r.o.G.
–Anissa