We are fast approaching Kendrie’s one-year anniversary of being diagnosed with leukemia. To say it has been a challenging year would be an understatement. The challenge for Kendrie has been enduring the numerous spinal taps, chemo sessions, blood draws, shots, and mountains of oral medicines she has taken since diagnosis, and will continue to take for another sixteen months. And let’s not forget the side effects like nausea, fatigue, bone and joint pain, and hair loss. She doesn’t necessarily do it willingly, but she grits her teeth and gets through it. The challenge for Blaine and me has been watching, and often facilitating, these very unpleasant tasks. But we try hard to stay grateful for every shot and pill we give her, for every needle stuck in her chest, legs and back, for unpleasant as they might be, they are what gives Kendrie her best chance for long-term survival against cancer.
Kendrie recently completed the first ten months of harsh chemotherapy and is now in the phase of treatment called “Long Term Maintenance”. It’s a real milestone for her (for all of us!) and we have decided to celebrate it by trying to make a difference in this world of childhood cancer. Now that our treatment roller coaster has slowed down, at least a little bit, we want to try and help others. In that respect, we will be walking in the Leukemia & Lymphoma Society’s “Light the Night” fundraising walk in Atlanta on October 9th, 2004, just four days shy of Kendrie’s one-year anniversary of being a cancer survivor.
The mission of the LLS is to support research to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and to improve the quality of life for patients and their families. For those suffering from blood-related cancers, “Light the Night” means hope for a cure. As a non-profit, the LLS relies on the generosity of individuals, corporations and foundations to support their mission. More than 75f every dollar they spend is for cancer research, education, advocacy and patient services.
Please consider helping our team, “Team Kendrie and Madie”, with a tax-deductible donation for our fundraising efforts. Its difficult asking for money, especially after so many of you have helped us already these past ten months in so many ways. But we really can make a difference with your help. No donation is too small. Our team goal is to raise $1000 dollars for the Leukemia & Lymphoma Society. Currently, the survival rate for acute lymphoblastic leukemia, the kind Kendrie has, is approximately 85 percent. But believe me, when you are the mommy or daddy, looking at your sick child, nothing less than 100 percent is good enough.
If you would consider making a donation, you can go to Team Kendrie and Madie and make an online donation. We will be mailing out letters to family and friends, also, if you would rather make a donation the "old-fashioned" way by sending a check! If you live close enough, consider joining us in Atlanta for the walk! We are walking with our leukemia-buddy Madie and her mom Regina, and our friends Gary, Lisa, Evan, Cara and Anna are driving down to join us, too. Just call me to ask how; we'd love to have more of you!
Thank you so much for your support. We couldn’t have made it this far without the help of family and friends (and you know who you are!)
Best wishes,
Blaine, Kristie, Brayden, Kellen and Kendrie
ps. If I could ask you for one more favor -- please take a moment to go to Carter's Corner and leave his family a note of encouragement. We met the Martins at our Family Camp last April and were struck by their faith, hope, and Carter's enthusiasm and energy. Carter is now at home on hospice and I can only imagine what the family is facing at this very difficult time. Sometimes it seems notes in the caringbridge guestbook are insignificant, and I never have anything wise or profound to say, but at the very least it lets a special family, and a very special boy, know that others are thinking about him. Thanks.
Sunday, August 29, 2004
Monday, August 23, 2004
CAN A SCHOOL DAY GET ANY BETTER THAN THIS?
Week #2, LTM
One Year Ago Today: August 23, 2003, I finally broke down and took Kendrie to the doctor. She had been complaining about her arm hurting, and had been limping around for several days, plus had been running a low-grade fever. Since it was a Saturday, we saw whatever practitioner was on duty, not her normal pediatrician. The guy seemed nice enough, but he made me feel silly. “Just a virus, push fluids, tylenol if she continues to complain.” I’m guessing it’s the flu, or maybe even something as mundane as growing pains (although deep down I suspect she got hurt wrestling with her older brother and sister.)
We had such a great day at school on Friday (again, notice I say “we” …. like I’m such an integral part of their day … which I’m not … but I like to think that I am.) I arranged for a Child Life Specialist from our local hospital to come and speak to both Pre-Kindergarten classes about illness, hospitals, doctors, leukemia and Kendrie in particular. Although I had never met this Child Life Specialist before that morning, she was really fabulous at her job and did a great presentation. She talked about cells, ports, chemotherapy, showed the medical-play doll, and then we watched the “Why, Charlie Brown, Why?” video. Then, she really hit it big with the kids when she passed out doctors’ hats, masks and gloves for them all to take home.
Since the presentation ended at recess time, I invited myself back to the playground to hang out with Kendrie’s class during recess. I’m pretty sure around this time Kendrie’s teacher was thinking, “Geez lady, don’t you have anything better to do?” but it was fun. I took lots of photos of the kids, and learned that Kendrie is a swing-hog if given the chance.
Then, that afternoon I was invited back (yes, that’s right, this time I actually had an invitation) to help the kids make their Friendship Salad (little-kid term for ‘big ole bowl of fruit’.) The extra latex gloves passed out by the Child Life Specialist came in handy right about then (just as long as I didn’t have to wear a hair net while I was passing it out) and then I got to stay for the impressive classroom renditions of Musical Chairs, which Kendrie won (the teacher SO had the whole thing rigged since I was standing there watching) and Doggie Doggie Where’s Your Bone, where I learned that Kendrie is either psychic, or cheats.
I also spent four mornings last week volunteering in Kellen’s class, several hours working for the Education Coordinator and sat through a PTO meeting. So for those of you who have left messages in the guestbook about “I must be enjoying my free time now that all three of the kids are in school full time” I just want to tell you that you are obviously on crack.
I hope that everyone’s week is off to a great start!
Love, Kristie
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KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I still can’t quite get the hang of this new “no snack before bed” rule. If this keeps up, I might have to actually start eating my dinner when it is served to me (gasp!)
BEST PART ABOUT HAVING CANCER TODAY: For the first time, today I went to school with no hat on! It was “red” day and so I had on my red Hershey Kisses t-shirt from Hershey, PA, and the only hat I had that matched it is a baseball cap which my mom said I am not allowed to wear to school so I decided to go without a hat and nobody said anything to me and that made me very happy and I might not ever wear a hat again! Well, at least until tomorrow which is "yellow" day and I have a cute hat that matches my yellow lemonade t-shirt.
One Year Ago Today: August 23, 2003, I finally broke down and took Kendrie to the doctor. She had been complaining about her arm hurting, and had been limping around for several days, plus had been running a low-grade fever. Since it was a Saturday, we saw whatever practitioner was on duty, not her normal pediatrician. The guy seemed nice enough, but he made me feel silly. “Just a virus, push fluids, tylenol if she continues to complain.” I’m guessing it’s the flu, or maybe even something as mundane as growing pains (although deep down I suspect she got hurt wrestling with her older brother and sister.)
We had such a great day at school on Friday (again, notice I say “we” …. like I’m such an integral part of their day … which I’m not … but I like to think that I am.) I arranged for a Child Life Specialist from our local hospital to come and speak to both Pre-Kindergarten classes about illness, hospitals, doctors, leukemia and Kendrie in particular. Although I had never met this Child Life Specialist before that morning, she was really fabulous at her job and did a great presentation. She talked about cells, ports, chemotherapy, showed the medical-play doll, and then we watched the “Why, Charlie Brown, Why?” video. Then, she really hit it big with the kids when she passed out doctors’ hats, masks and gloves for them all to take home.
Since the presentation ended at recess time, I invited myself back to the playground to hang out with Kendrie’s class during recess. I’m pretty sure around this time Kendrie’s teacher was thinking, “Geez lady, don’t you have anything better to do?” but it was fun. I took lots of photos of the kids, and learned that Kendrie is a swing-hog if given the chance.
Then, that afternoon I was invited back (yes, that’s right, this time I actually had an invitation) to help the kids make their Friendship Salad (little-kid term for ‘big ole bowl of fruit’.) The extra latex gloves passed out by the Child Life Specialist came in handy right about then (just as long as I didn’t have to wear a hair net while I was passing it out) and then I got to stay for the impressive classroom renditions of Musical Chairs, which Kendrie won (the teacher SO had the whole thing rigged since I was standing there watching) and Doggie Doggie Where’s Your Bone, where I learned that Kendrie is either psychic, or cheats.
I also spent four mornings last week volunteering in Kellen’s class, several hours working for the Education Coordinator and sat through a PTO meeting. So for those of you who have left messages in the guestbook about “I must be enjoying my free time now that all three of the kids are in school full time” I just want to tell you that you are obviously on crack.
I hope that everyone’s week is off to a great start!
Love, Kristie
#######################################
KENDRIE’S PERSPECTIVE:
WORST THING ABOUT HAVING CANCER TODAY: I still can’t quite get the hang of this new “no snack before bed” rule. If this keeps up, I might have to actually start eating my dinner when it is served to me (gasp!)
BEST PART ABOUT HAVING CANCER TODAY: For the first time, today I went to school with no hat on! It was “red” day and so I had on my red Hershey Kisses t-shirt from Hershey, PA, and the only hat I had that matched it is a baseball cap which my mom said I am not allowed to wear to school so I decided to go without a hat and nobody said anything to me and that made me very happy and I might not ever wear a hat again! Well, at least until tomorrow which is "yellow" day and I have a cute hat that matches my yellow lemonade t-shirt.
Thursday, August 19, 2004
***RANDOM THOUGHTS***
(How Random? Well, at least as random as a leukemia diagnosis, right?)
Week #2 of LTM
***Aug 19 – One year ago today, Kendrie got sick. We had company visiting and during lunch at a local restaurant she lay down in our laps at the table and fell fast asleep. She wouldn’t interact with the company, either; not even her Grandma Betty who was also visiting from out of state, which seemed odd. I assumed she was a little tired, or being a little shy. Maybe just a virus or something?
***Thank you so very much to our family friend Bruce G. for donating blood – again! Every time Mr. G. donates he sends a note to Kendrie through the American Red Cross to tell her he is thinking about her. We appreciate the notes, and even more, appreciate the donation on behalf of cancer kids everywhere! Please consider donating if you able. With Labor Day and end-of-summer holidays/traveling coming up, the Red Cross will be short of donations (as usual.) (Mrs. G, thanks for the pictures of those handsome boys and the nice note!!!)
***Thank you to my friend Kelly E. for donating blood with me last week. It is much more fun to donate with a friend, and even better when we skip the Red Cross juice and cookie and go to dinner at a restaurant afterwards instead!
***Happy, happy (one-day early) birthday to Jonah and Benjamin!! We wish all the best to you, your parents and your grandparents, and can’t wait until we get a chance to see you both again. Where has this year gone??? I’m sorry your present is late but one of the things I ordered is on back-order, ugh! It will be there soon!
***Quote (paraphrased) of the week, from Wilson's Mom, Belinda: “Yeah, sure, leukemia is the ‘good’ kind of cancer with a cure rate of 85 percent. But if the survival rate for playing soccer was 85 percent, would you let your kid play?”
***Have I mentioned what a wonderful job Kendrie’s school, teachers, staff and administration is doing with her, and of humoring my paranoia’s? She did come home sick one day this week (naturally, the day I had a bazillion errands planned) but over all, I couldn’t be more pleased with how everything is being handled.
*** Wish us luck tonight as this will be the first night Kendrie has to take 7 pills in the evening. Most nights it is one or one and a half, which I can crush up and put in applesauce. But I’m not sure we can effectively hide the powder of 7 pills in one spoonful of applesauce. I’m annoyed with myself because I’ve had mini m&ms in the house for two months, intending to “practice” pill swallowing with Kendrie. Each time, though, the novelty wears off and the kids wind up just eating all the m&ms. (They got their lack of will power from me.) Thankfully, the mountain of medicine only takes place on Thursdays ….
***Please stop by Christopher's site and wish him well. Christopher had his bone marrow transplant this week with his very brave sister Sam as the donor. Christopher, we hope this is the beginning of a road to total recovery for you! And good job, Sam!
***Finally, months after “meeting” online, I finally met in person another Robins AFB cancer mom. (Good grief, I hope there are only two of us!) Jenny, mom to Jacob, it was nice to get to visit with you today! I look forward to spending more time with you, maybe even on that bowling league!
I think that’s it for now. I’m sure there are more random thoughts (most of my thoughts fall into that category, after all) but I’ll keep this journal entry short. A few of you have e-mailed me privately about the song on the site. I’d like to take credit for discovering it, but it’s actually off the Disney “Home on the Range” soundtrack, by Tim McGraw. I still think it fits our situation perfectly, although it’s not as peppy as usual, so I’ll be changing it out soon. I figure for a song to be a Caringbridge success, at least one person has to tell me they’ve turned off their speakers because of me!
Hope you are all having a great week,
Kristie
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KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: I thought my mom would let up on the obsessive-compulsive cleaning thing when I started school but I actually think she’s worse. Did you know that she attached about eleven-teen itty, bitty, teeny tiny bottles of Purell to my backpack and each night when I come home she actually looks at them to make sure the levels have gone down so she knows I am using it???? What a freak.
BEST PART ABOUT HAVING CANCER TODAY: My mom told me that tomorrow at school a nice lady from the hospital is coming in to talk to my class about me. Well, not about ME, so much, as about leukemia, and ports, and being bald-headed. Wow, I’m pretty much famous, huh?
Week #2 of LTM
***Aug 19 – One year ago today, Kendrie got sick. We had company visiting and during lunch at a local restaurant she lay down in our laps at the table and fell fast asleep. She wouldn’t interact with the company, either; not even her Grandma Betty who was also visiting from out of state, which seemed odd. I assumed she was a little tired, or being a little shy. Maybe just a virus or something?
***Thank you so very much to our family friend Bruce G. for donating blood – again! Every time Mr. G. donates he sends a note to Kendrie through the American Red Cross to tell her he is thinking about her. We appreciate the notes, and even more, appreciate the donation on behalf of cancer kids everywhere! Please consider donating if you able. With Labor Day and end-of-summer holidays/traveling coming up, the Red Cross will be short of donations (as usual.) (Mrs. G, thanks for the pictures of those handsome boys and the nice note!!!)
***Thank you to my friend Kelly E. for donating blood with me last week. It is much more fun to donate with a friend, and even better when we skip the Red Cross juice and cookie and go to dinner at a restaurant afterwards instead!
***Happy, happy (one-day early) birthday to Jonah and Benjamin!! We wish all the best to you, your parents and your grandparents, and can’t wait until we get a chance to see you both again. Where has this year gone??? I’m sorry your present is late but one of the things I ordered is on back-order, ugh! It will be there soon!
***Quote (paraphrased) of the week, from Wilson's Mom, Belinda: “Yeah, sure, leukemia is the ‘good’ kind of cancer with a cure rate of 85 percent. But if the survival rate for playing soccer was 85 percent, would you let your kid play?”
***Have I mentioned what a wonderful job Kendrie’s school, teachers, staff and administration is doing with her, and of humoring my paranoia’s? She did come home sick one day this week (naturally, the day I had a bazillion errands planned) but over all, I couldn’t be more pleased with how everything is being handled.
*** Wish us luck tonight as this will be the first night Kendrie has to take 7 pills in the evening. Most nights it is one or one and a half, which I can crush up and put in applesauce. But I’m not sure we can effectively hide the powder of 7 pills in one spoonful of applesauce. I’m annoyed with myself because I’ve had mini m&ms in the house for two months, intending to “practice” pill swallowing with Kendrie. Each time, though, the novelty wears off and the kids wind up just eating all the m&ms. (They got their lack of will power from me.) Thankfully, the mountain of medicine only takes place on Thursdays ….
***Please stop by Christopher's site and wish him well. Christopher had his bone marrow transplant this week with his very brave sister Sam as the donor. Christopher, we hope this is the beginning of a road to total recovery for you! And good job, Sam!
***Finally, months after “meeting” online, I finally met in person another Robins AFB cancer mom. (Good grief, I hope there are only two of us!) Jenny, mom to Jacob, it was nice to get to visit with you today! I look forward to spending more time with you, maybe even on that bowling league!
I think that’s it for now. I’m sure there are more random thoughts (most of my thoughts fall into that category, after all) but I’ll keep this journal entry short. A few of you have e-mailed me privately about the song on the site. I’d like to take credit for discovering it, but it’s actually off the Disney “Home on the Range” soundtrack, by Tim McGraw. I still think it fits our situation perfectly, although it’s not as peppy as usual, so I’ll be changing it out soon. I figure for a song to be a Caringbridge success, at least one person has to tell me they’ve turned off their speakers because of me!
Hope you are all having a great week,
Kristie
###################################################
KENDRIE’S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: I thought my mom would let up on the obsessive-compulsive cleaning thing when I started school but I actually think she’s worse. Did you know that she attached about eleven-teen itty, bitty, teeny tiny bottles of Purell to my backpack and each night when I come home she actually looks at them to make sure the levels have gone down so she knows I am using it???? What a freak.
BEST PART ABOUT HAVING CANCER TODAY: My mom told me that tomorrow at school a nice lady from the hospital is coming in to talk to my class about me. Well, not about ME, so much, as about leukemia, and ports, and being bald-headed. Wow, I’m pretty much famous, huh?
Thursday, August 12, 2004
LONG-TERM MAINTENANCE, WE HAVE ARRIVED!
Day #1, Week #1, LTM, wahoooooo!
Ten months ago tomorrow our daughter Kendrie collapsed on our front porch after blood tests showed her to be anemic. Perhaps “collapsed” is too strong a word ……. fainted, passed out, so woozy she fell down …….. take your pick. Whatever the verb, little did we know that in just a few short days we would go from having a child who we thought was simply anemic to having our world totally rocked with the words, “I’m sorry, it’s cancer.” I wish no parent should ever have to endure that shock and grief, and at the same time I give thanks that the past ten months have gone as smoothly for us as they have.
Today we began (notice how I always say “we”, when in reality its *Kendrie* who’s doing all the work?!?) the phase of therapy known as Long Term Maintenance (LTM--also called Continuation on some protocols.) Basically, the final phase of treatment for ALL, which consists of lower-dose chemotherapy given for two to three years to kill any remaining leukemia cells. “This portion of the treatment is less toxic and easier to tolerate than induction and consolidation.” --- I copied that sentence verbatim out of my Guide to Leukemia book – and I plan on holding the author at her word! And for us it’s even better, since Kendrie’s LTM will last less than that, approx sixteen months. In fact, her oncologist today gave us the date she is scheduled to finish her therapy; December 15, 2005. Start making plans now, or pinching pennies for airfare if you need, because you are ALL invited to the off-treatment party!
Treatment today consisted of iv chemo and a spinal tap for intra-thecal chemo. The phone rang about 4:30 and my heart literally stopped for a second. Thank goodness it wasn’t the oncologist calling (other cancer-parents know exactly what I mean) which means her spinal fluid was clear (no leukemia cells found!) It’s hard to believe she won’t have another spinal tap for three months. For a good long while in her treatment plan she was having one a week. We won’t know what to do with ourselves, with twelve weeks in between spinals! Here are some highlights from today’s appointment:
"Woo-Hoo, look at this treasure chest! It *almost* makes the back poke worthwhile. Or at least it would have been, if my mom wasn't such a moron that she put the magic-cream a little too low on my back so my doctor had to give me a DOUBLE DOSE of sleepy medicine today! Whoa, I still feel woozy!"
"Hey, the clowns were visiting today! This guy was a hoot; he didn't even know how to sing the ABC song and I had to sing it for them and explain why they kept missing a few letters. They must not have paid as good of attention in pre-kindergarten as I am doing."
"This was definitely the BEST highlight! Our new friends Mrs. Jenny and her daughter Catie that we met at the Lighthouse Retreat a few weeks ago were in clinic today, too, so we got to have lunch together! Even better (and a fabulous coincidence!) is that Catie and I each only go to clinic one day a month and can you believe that we discovered today that we are going on the same day each month?!? How great is that?!? So now we have a standing lunch date every time. Mrs. Kristin, Brandon's mom, if you're reading this, we want you to come with us next time, too!"
While I’m not so naïve as to assume the next sixteen months will be problem-free, it is a great feeling to know we’re only scheduled to burn up the road to and from Atlanta once a month from here on out. The flip side of that is the increased oral chemo she will receive at home …. Check this out:
Purinethol: 1 tablet in the evenings except for Sunday when she receives 1 and a half; taken on an empty stomach; no milk or dairy; preferably at bedtime
Methotrexate: 6 tablets every Thursday, except for spinal-tap Thursdays, taken on an empty stomach, no milk or dairy; preferably at bedtime
Decadron: (the steroid from Hell): one-half of a 4 mg tab in the morning, except for on clinic days, one-half of a 4 mg tab in the evenings, one .5 mg tab once a day, taken with food, NOT on an empty stomach, taken for five days every twenty-eight days
Zantac: take as needed to keep the Decadron from causing stomach pain
Zofran: take as needed for nausea
Bactrim: 1 tsp in the morning and 1 tsp in the evenings, Saturday and Sunday only
Amoxicillan: take as prescribed for upcoming dental appointments
You get the picture. I swear, you need a degree in rocket science to keep all this straight.
Speaking of medicine and the numerous other things these brave kids have to endure, I thought I would total up what Kendrie has been through the past ten months, to put it in perspective. It was really depressing (and a slight indicator of my lousy math abilities) when I had to get out a calculator. And bear in mind that this is an estimate …. There are many other meds that aren’t prescribed (like Tylenol) that she took for various aches and pains. Plus, after awhile, we just quit keeping track of non-scheduled drugs.
In the ten months between diagnosis and long-term maintenance:
Rounds of IV Chemo: 25
Rounds of IV antibiotics for fever: 2
Leg shots (Peg, ARAC, and flu shots): 20
Spinal taps (aka lumbar punctures): 14
Bone marrow aspirations: 5
Bone marrow biopsies: 1
Doses of oral medication: 434
Blood draws, office visits, vital signs and exams: way too freakin’ many to count
Remember also that Kendrie has had an almost textbook perfect treatment so far. We haven’t been inpatient since diagnosis and have only been to the clinic/ER for fevers twice. These totals, no matter how high they might look to people in the non-cancer world, are probably lower, if I were guessing, than 90 percent of the other kids out there being treated for the same thing.
I don’t know whether to be amazed or depressed, ha!
I also thought I would stay with my theme of “ten months” and list the top ten ways leukemia has changed ME the most.
1. I used to carry CDs and spare sunglasses in my glove box. Now it is perfectly normal (in fact, wise) to travel with a syringe of Zofran and an emesis basin, not to mention the Purell and antibacterial wipes in my purse and the car.
2. The 10 speed dial buttons for family and friends on our phone have been replaced by the numbers for the oncologist, his nurse, his scheduler, the pediatrician, Tricare, four separate pharmacies, and Pizza Hut.
3. The chaotic sounds of beeps and whistles and bells used to make me crazy. Now, the five-minute warning beep on an infusion machine is music to my ears.
4. The night before the first day of school, I used to lay in bed and worry that my children might not make friends or like their new teacher. This year, I laid in bed and worried one of Kendrie’s classmates might sneeze on her and put her in the hospital.
5. I used to plan our vacations around school schedules and the fiscal calendar. Now I plan them around chemo schedules and anticipated ANC counts.
6. Used to, I couldn’t watch the St. Jude’s fund-raising commercials because seeing all those sick, bald kids made me too sad. Now, I watch eagerly, hoping to see some of our Caringbridge friends!
7. I used to think (vainly, I admit) that Kendrie looked a little bit like me when I was small. Now I realize that when her hair finally started to grow in, she looked more like Billy Idol in the White Wedding video.
8. My sense of humor has become demented to the point that I laughed and felt smug when I realized no hair means no need to worry about any kind of lice outbreak at school.
9. Speaking of hair, I used to think my own gray hairs made me look old. Now I like to imagine that they signal wisdom and are hard-won.
10. I used to think it was easier to give help than to ask for it. And in fact, it might still be easier. But I will never forget, or cease to appreciate, or take for granted, the help, in its many various fashions, that our family has received over the past ten months.
So, in closing, I’d just like to make my public proclamation to Kendrie that like the song says, the road ahead may not be breezy, but I promise to try and make it easy. You’ve made it through the hardest ten months, that’s for sure. I have great confidence in your ability to manage the next sixteen with grace, style, and some super-hero butt-kicking power!
No matter where the trail may lead, I love you, Mom
Ten months ago tomorrow our daughter Kendrie collapsed on our front porch after blood tests showed her to be anemic. Perhaps “collapsed” is too strong a word ……. fainted, passed out, so woozy she fell down …….. take your pick. Whatever the verb, little did we know that in just a few short days we would go from having a child who we thought was simply anemic to having our world totally rocked with the words, “I’m sorry, it’s cancer.” I wish no parent should ever have to endure that shock and grief, and at the same time I give thanks that the past ten months have gone as smoothly for us as they have.
Today we began (notice how I always say “we”, when in reality its *Kendrie* who’s doing all the work?!?) the phase of therapy known as Long Term Maintenance (LTM--also called Continuation on some protocols.) Basically, the final phase of treatment for ALL, which consists of lower-dose chemotherapy given for two to three years to kill any remaining leukemia cells. “This portion of the treatment is less toxic and easier to tolerate than induction and consolidation.” --- I copied that sentence verbatim out of my Guide to Leukemia book – and I plan on holding the author at her word! And for us it’s even better, since Kendrie’s LTM will last less than that, approx sixteen months. In fact, her oncologist today gave us the date she is scheduled to finish her therapy; December 15, 2005. Start making plans now, or pinching pennies for airfare if you need, because you are ALL invited to the off-treatment party!
Treatment today consisted of iv chemo and a spinal tap for intra-thecal chemo. The phone rang about 4:30 and my heart literally stopped for a second. Thank goodness it wasn’t the oncologist calling (other cancer-parents know exactly what I mean) which means her spinal fluid was clear (no leukemia cells found!) It’s hard to believe she won’t have another spinal tap for three months. For a good long while in her treatment plan she was having one a week. We won’t know what to do with ourselves, with twelve weeks in between spinals! Here are some highlights from today’s appointment:
"Woo-Hoo, look at this treasure chest! It *almost* makes the back poke worthwhile. Or at least it would have been, if my mom wasn't such a moron that she put the magic-cream a little too low on my back so my doctor had to give me a DOUBLE DOSE of sleepy medicine today! Whoa, I still feel woozy!"
"Hey, the clowns were visiting today! This guy was a hoot; he didn't even know how to sing the ABC song and I had to sing it for them and explain why they kept missing a few letters. They must not have paid as good of attention in pre-kindergarten as I am doing."
"This was definitely the BEST highlight! Our new friends Mrs. Jenny and her daughter Catie that we met at the Lighthouse Retreat a few weeks ago were in clinic today, too, so we got to have lunch together! Even better (and a fabulous coincidence!) is that Catie and I each only go to clinic one day a month and can you believe that we discovered today that we are going on the same day each month?!? How great is that?!? So now we have a standing lunch date every time. Mrs. Kristin, Brandon's mom, if you're reading this, we want you to come with us next time, too!"
While I’m not so naïve as to assume the next sixteen months will be problem-free, it is a great feeling to know we’re only scheduled to burn up the road to and from Atlanta once a month from here on out. The flip side of that is the increased oral chemo she will receive at home …. Check this out:
Purinethol: 1 tablet in the evenings except for Sunday when she receives 1 and a half; taken on an empty stomach; no milk or dairy; preferably at bedtime
Methotrexate: 6 tablets every Thursday, except for spinal-tap Thursdays, taken on an empty stomach, no milk or dairy; preferably at bedtime
Decadron: (the steroid from Hell): one-half of a 4 mg tab in the morning, except for on clinic days, one-half of a 4 mg tab in the evenings, one .5 mg tab once a day, taken with food, NOT on an empty stomach, taken for five days every twenty-eight days
Zantac: take as needed to keep the Decadron from causing stomach pain
Zofran: take as needed for nausea
Bactrim: 1 tsp in the morning and 1 tsp in the evenings, Saturday and Sunday only
Amoxicillan: take as prescribed for upcoming dental appointments
You get the picture. I swear, you need a degree in rocket science to keep all this straight.
Speaking of medicine and the numerous other things these brave kids have to endure, I thought I would total up what Kendrie has been through the past ten months, to put it in perspective. It was really depressing (and a slight indicator of my lousy math abilities) when I had to get out a calculator. And bear in mind that this is an estimate …. There are many other meds that aren’t prescribed (like Tylenol) that she took for various aches and pains. Plus, after awhile, we just quit keeping track of non-scheduled drugs.
In the ten months between diagnosis and long-term maintenance:
Rounds of IV Chemo: 25
Rounds of IV antibiotics for fever: 2
Leg shots (Peg, ARAC, and flu shots): 20
Spinal taps (aka lumbar punctures): 14
Bone marrow aspirations: 5
Bone marrow biopsies: 1
Doses of oral medication: 434
Blood draws, office visits, vital signs and exams: way too freakin’ many to count
Remember also that Kendrie has had an almost textbook perfect treatment so far. We haven’t been inpatient since diagnosis and have only been to the clinic/ER for fevers twice. These totals, no matter how high they might look to people in the non-cancer world, are probably lower, if I were guessing, than 90 percent of the other kids out there being treated for the same thing.
I don’t know whether to be amazed or depressed, ha!
I also thought I would stay with my theme of “ten months” and list the top ten ways leukemia has changed ME the most.
1. I used to carry CDs and spare sunglasses in my glove box. Now it is perfectly normal (in fact, wise) to travel with a syringe of Zofran and an emesis basin, not to mention the Purell and antibacterial wipes in my purse and the car.
2. The 10 speed dial buttons for family and friends on our phone have been replaced by the numbers for the oncologist, his nurse, his scheduler, the pediatrician, Tricare, four separate pharmacies, and Pizza Hut.
3. The chaotic sounds of beeps and whistles and bells used to make me crazy. Now, the five-minute warning beep on an infusion machine is music to my ears.
4. The night before the first day of school, I used to lay in bed and worry that my children might not make friends or like their new teacher. This year, I laid in bed and worried one of Kendrie’s classmates might sneeze on her and put her in the hospital.
5. I used to plan our vacations around school schedules and the fiscal calendar. Now I plan them around chemo schedules and anticipated ANC counts.
6. Used to, I couldn’t watch the St. Jude’s fund-raising commercials because seeing all those sick, bald kids made me too sad. Now, I watch eagerly, hoping to see some of our Caringbridge friends!
7. I used to think (vainly, I admit) that Kendrie looked a little bit like me when I was small. Now I realize that when her hair finally started to grow in, she looked more like Billy Idol in the White Wedding video.
8. My sense of humor has become demented to the point that I laughed and felt smug when I realized no hair means no need to worry about any kind of lice outbreak at school.
9. Speaking of hair, I used to think my own gray hairs made me look old. Now I like to imagine that they signal wisdom and are hard-won.
10. I used to think it was easier to give help than to ask for it. And in fact, it might still be easier. But I will never forget, or cease to appreciate, or take for granted, the help, in its many various fashions, that our family has received over the past ten months.
So, in closing, I’d just like to make my public proclamation to Kendrie that like the song says, the road ahead may not be breezy, but I promise to try and make it easy. You’ve made it through the hardest ten months, that’s for sure. I have great confidence in your ability to manage the next sixteen with grace, style, and some super-hero butt-kicking power!
No matter where the trail may lead, I love you, Mom
Friday, August 06, 2004
FIRST DAY OF SCHOOL!
Week #9 (extended) of DI #2
“Dear Teacher,
Today, I turn some of my little girl’s life over to you. It is not easy for me, because I held her so tight when she was newborn. And I taught her and she felt the love of her family.
But today a new chapter in her life begins. And for a few hours, I will not be there to answer her questions, kiss her bruises, to “save her” from some pain, but you will be there.
Be kind, for she is small. She has so much to give, and so much to learn. And so for those few hours when she is yours, remember, I held her tightly, I share her dreams, her hopes.
Give her love and help her learn. And when the day is over, send her home unharmed.”
Author – Eden Taylor
I can’t even describe to you the pure joy and excitement that was Kendrie today, on her first day of Pre-Kindergarten. First of all, she was up and had eaten, dressed and brushed her teeth, sitting on the couch with her backpack strapped to her shoulders, proclaiming LOUDLY that we were all going to be LATE, at 7am. School doesn’t start until 8:30.
She RAN (I am not kidding; it was so cute but she was faster with her feet than I was with my camera) into the school and sighed loudly and fidgeted the entire time we were getting Brayden and Kellen settled into their rooms.
Finally, FINALLY it was time to take her to her room. Thanks to the meeting we had with some of the faculty earlier this week, plus the Open House on Wednesday, she knew exactly where to go and felt comfortable right away. At least I *think* she felt comfortable, she wouldn’t stop playing with the toys and exploring the room long enough to really stop and tell me.
We have been blessed with a teacher and a para-pro (teacher’s assistant) in her room who are both warm and caring, and extremely receptive my many quirks and paranoia’s as a cancer-parent. Kellen and Brayden both got teachers who are also receptive to our requests …honestly, the year couldn’t have gotten off to a better start.
I think Kendrie was so excited to start school this year for several reasons … first of all, thanks to the Georgia lottery and public education funding, she’s attending the same all-day elementary school that her siblings have attended the past two years; obviously that makes her a big girl. In fact, she’s practically a grown up now, and she proceeded to show us by pouring ALL of her own milk today. (Of course, she neglected to put the milk back in the fridge afterwards and kept leaving it out on the counter … but maybe that little tidbit of responsibility will come later.)
Secondly, what kid wouldn’t be thrilled for any chance to own a Scooby Doo backpack? Notice the Purell attached to as many places as I could find???
And third, I think she was just plain sick and tired of being stuck at home with me these past nine months. For those of you who aren’t as familiar with her story …. (I’ll keep it brief, I promise) she had previously attended a full-year of private pre-school and was about seven weeks into the second year at the same school, with the same teacher, when she was diagnosed last October with leukemia. Although she loved school and her oncologist encouraged us to leave her in, we panicked a bit and decided to pull her out through the holidays. We toyed with the idea of sending her back in January, but decided against it. (The fact that the school sold her slot to another child the week after she got sick might have had something to do with it, but maybe that's just me being bitter and angry that they never so much as called one single time to check on her ... I mean, come on, would a phone call have hurt them??? Oh wait, there I go again!)
So, for the rest of the year, she was home-bound, with just Mommy, Dora and a whole lot of Clifford for company. I go back and forth in my mind ………. She was so healthy that she probably would have been ok in school ………. Or was she so healthy because I kept her home with me and didn’t send her to school?? Who knows which answer is correct? The million-dollar question regarding the chicken vs. egg dilemma is next.
Irregardless, she has waited a long time for her turn back in a classroom, hanging with her homies, and was ecstatic to go to school this morning. It was a little bittersweet for me, not because (as some might think) that she’s my baby and now they’ve all left the nest for elementary education seven hours a day, but because as I watched her zip around the room, meeting the other kids, finding her cubby, exploring her new world, I couldn’t help but think back to nine months ago, when we were terrified she wouldn’t even live, let alone be as happy and adjusted as she was on her first day of Pre-Kindergarten. I can guarantee you that while many of the parents dropping their kids off this first morning, taking pictures with the teachers and peeking in the rooms for one final goodbye probably love their kids just as much as me, NO ONE loved their kids MORE than me this morning. Today, seeing the happiness on her face, was my reminder that life does go on in spite of cancer, and some days it is damn good.
On the medical front, her counts weren’t quite recovered enough after that last DI to have chemo this week and start the maintenance part of therapy. That means the clinic appointment was pushed back until next week and she’ll miss one of the first days of school for chemo and a spinal tap, but that’s ok. The silver lining is that meant we got to spend our final day of summer doing FUN stuff like swimming and having dinner at a Japanese Steakhouse (where Kendrie leaned over to me during the meal and asked if *everyone* who worked there could speak Spanish?) It also means she won’t be on steroids the first full week of school. (Probably more of a blessing for her teachers, ha!) So now for we’re on “pause” with instructions to have her counts checked again next week when they will most likely be high enough to continue the chemotherapy.
I hope you have a great week in the meantime,
Kristie
#####################################################
KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: "What, me? Cancer didn't slow me down one bit today! I am a full-time STUDENT, baby!"
BEST PART ABOUT HAVING CANCER TODAY: "I get permission to wear hats to school, but to be honest, once the novelty wears off I think I'll skip it. It's just one more thing for me to keep up with and my cool Scooby Doo backpack is already pretty full!"
“Dear Teacher,
Today, I turn some of my little girl’s life over to you. It is not easy for me, because I held her so tight when she was newborn. And I taught her and she felt the love of her family.
But today a new chapter in her life begins. And for a few hours, I will not be there to answer her questions, kiss her bruises, to “save her” from some pain, but you will be there.
Be kind, for she is small. She has so much to give, and so much to learn. And so for those few hours when she is yours, remember, I held her tightly, I share her dreams, her hopes.
Give her love and help her learn. And when the day is over, send her home unharmed.”
Author – Eden Taylor
I can’t even describe to you the pure joy and excitement that was Kendrie today, on her first day of Pre-Kindergarten. First of all, she was up and had eaten, dressed and brushed her teeth, sitting on the couch with her backpack strapped to her shoulders, proclaiming LOUDLY that we were all going to be LATE, at 7am. School doesn’t start until 8:30.
She RAN (I am not kidding; it was so cute but she was faster with her feet than I was with my camera) into the school and sighed loudly and fidgeted the entire time we were getting Brayden and Kellen settled into their rooms.
Finally, FINALLY it was time to take her to her room. Thanks to the meeting we had with some of the faculty earlier this week, plus the Open House on Wednesday, she knew exactly where to go and felt comfortable right away. At least I *think* she felt comfortable, she wouldn’t stop playing with the toys and exploring the room long enough to really stop and tell me.
We have been blessed with a teacher and a para-pro (teacher’s assistant) in her room who are both warm and caring, and extremely receptive my many quirks and paranoia’s as a cancer-parent. Kellen and Brayden both got teachers who are also receptive to our requests …honestly, the year couldn’t have gotten off to a better start.
I think Kendrie was so excited to start school this year for several reasons … first of all, thanks to the Georgia lottery and public education funding, she’s attending the same all-day elementary school that her siblings have attended the past two years; obviously that makes her a big girl. In fact, she’s practically a grown up now, and she proceeded to show us by pouring ALL of her own milk today. (Of course, she neglected to put the milk back in the fridge afterwards and kept leaving it out on the counter … but maybe that little tidbit of responsibility will come later.)
Secondly, what kid wouldn’t be thrilled for any chance to own a Scooby Doo backpack? Notice the Purell attached to as many places as I could find???
And third, I think she was just plain sick and tired of being stuck at home with me these past nine months. For those of you who aren’t as familiar with her story …. (I’ll keep it brief, I promise) she had previously attended a full-year of private pre-school and was about seven weeks into the second year at the same school, with the same teacher, when she was diagnosed last October with leukemia. Although she loved school and her oncologist encouraged us to leave her in, we panicked a bit and decided to pull her out through the holidays. We toyed with the idea of sending her back in January, but decided against it. (The fact that the school sold her slot to another child the week after she got sick might have had something to do with it, but maybe that's just me being bitter and angry that they never so much as called one single time to check on her ... I mean, come on, would a phone call have hurt them??? Oh wait, there I go again!)
So, for the rest of the year, she was home-bound, with just Mommy, Dora and a whole lot of Clifford for company. I go back and forth in my mind ………. She was so healthy that she probably would have been ok in school ………. Or was she so healthy because I kept her home with me and didn’t send her to school?? Who knows which answer is correct? The million-dollar question regarding the chicken vs. egg dilemma is next.
Irregardless, she has waited a long time for her turn back in a classroom, hanging with her homies, and was ecstatic to go to school this morning. It was a little bittersweet for me, not because (as some might think) that she’s my baby and now they’ve all left the nest for elementary education seven hours a day, but because as I watched her zip around the room, meeting the other kids, finding her cubby, exploring her new world, I couldn’t help but think back to nine months ago, when we were terrified she wouldn’t even live, let alone be as happy and adjusted as she was on her first day of Pre-Kindergarten. I can guarantee you that while many of the parents dropping their kids off this first morning, taking pictures with the teachers and peeking in the rooms for one final goodbye probably love their kids just as much as me, NO ONE loved their kids MORE than me this morning. Today, seeing the happiness on her face, was my reminder that life does go on in spite of cancer, and some days it is damn good.
On the medical front, her counts weren’t quite recovered enough after that last DI to have chemo this week and start the maintenance part of therapy. That means the clinic appointment was pushed back until next week and she’ll miss one of the first days of school for chemo and a spinal tap, but that’s ok. The silver lining is that meant we got to spend our final day of summer doing FUN stuff like swimming and having dinner at a Japanese Steakhouse (where Kendrie leaned over to me during the meal and asked if *everyone* who worked there could speak Spanish?) It also means she won’t be on steroids the first full week of school. (Probably more of a blessing for her teachers, ha!) So now for we’re on “pause” with instructions to have her counts checked again next week when they will most likely be high enough to continue the chemotherapy.
I hope you have a great week in the meantime,
Kristie
#####################################################
KENDRIE'S PERSPECTIVE:
WORST PART ABOUT HAVING CANCER TODAY: "What, me? Cancer didn't slow me down one bit today! I am a full-time STUDENT, baby!"
BEST PART ABOUT HAVING CANCER TODAY: "I get permission to wear hats to school, but to be honest, once the novelty wears off I think I'll skip it. It's just one more thing for me to keep up with and my cool Scooby Doo backpack is already pretty full!"
Sunday, August 01, 2004
“THERE ARE BEACH PEOPLE…………………………”
(and/or) “WHY YOU NOW HATE ME IF YOU HAVE A DIAL-UP CONNECTION”
End of Week #8 of DI #2, CCG 1991, Arm D
OK, here’s pretty much the way I see the world:
There are dog people, and there are cat people.
There are sock people, and there are barefoot people.
There are beer people, and there are martini people.
There are city people, and there are rural people.
There are beach people, and there are lake people.
Blaine and I have always been, without a doubt, sock-wearing, beer-swilling (well, him, not me) canine-loving, rural-living, LAKE people. The beach has just never “done it” for us. The sand is gritty, the water tastes nasty, my skin gets sticky, the seaweed is slimy, you have to watch out for creepy crawlies in the water, and did I mention that the gritty sand gets EVERYWHERE????? Plus, it’s just not as easy to water-ski in the ocean!
However, if ANYTHING or ANY VACATION was enough to change our minds, and swing us over to the Beach-People side of the equation, it would be this past week at The Lighthouse Family Retreat in Gulf Trace, Florida. I simply cannot remember a time when our family had so much fun, and felt so cared about by others.
A brief history: Melinda, the founder of The Lighthouse Family Retreat, worked as a pediatric oncology nurse for eight years, but felt God had a vision for her to create a seaside family retreat for children with cancer. In 1999 she resigned from her job as a Pediatric Nurse Practitioner and started working full-time to develop this ministry. The first week-long retreat was held in 2000 through the hard work of Melinda and the *amazing* dedication of volunteers. Although land has been donated for the Lighthouse to build their own permanent seaside facility, for now they rent facilities, offering seven to 10 retreats a year, helping 80-100 families. And for us to have been one of those families this summer …. Well, I don’t think it gets much better than this past week!
I’m not exactly sure I can find the words (now THAT’S a first!) to describe the kindness and generosity shown to my family this past week. First of all, the retreat is just plain FUN! Arts & crafts, swimming, movies on the beach, singing, Beach Olympics, a luau, a talent show; it seems like the activities just go on and on. But we also had plenty of time to simply hang out on the beach, soak up some sun (which equates to slathering sunscreen on our kids twelve times a day!) or relax in our condominium, getting to know the other families.
One of the families we had a chance to become acquainted with is a family I had met online, through Caringbridge; Jenny, Tre’ and Catie. They are such fun and it was a real treat for us to get to know them in person ….. and of course now we’re rooting harder than ever for Catie to win her battle with medulloblastoma, a brain tumor. Kendrie was pretty much OBSESSED with Catie, so it’s good they only live a few hours from us, as I have a feeling that upcoming visits will be in store.
Tre', Jenny, and Catie, with her face painted like a kitty-cat!
But back to the retreat. Not only did Melinda and her crew provide plenty of opportunity to keep us as busy as we wanted to be, laughing, playing, and spending time as a family, they also worked incredibly hard to make this week a time of relaxation and restoration.
Upon arrival, we were assigned “Family Helpers”, a wonderful young couple named Brooke and Preston, whose goal it was to do everything in their power to make the week easier for our family. They helped with basics like laundry, getting us drinks at meals, folding down our beds at night and putting fresh-baked cookies and hand-written notes on our pillows (of course, the cookies were my personal favorite part!) and taking our kids under their wing in a way I just can’t explain. Any time Blaine and I had a parent group or outing to attend, Brooke and Preston were right there, taking our kids on activities and keeping them involved and comfortable. They hung out with us on the beach, took the kids crabbing at night, and tolerated (with amazingly good humor) the kids climbing all over them for six straight days. They’ve been married less than a year, and I’m a little worried they might decide never to have children of their own, after spending so much time with ours!
Blaine and I have been on vacations before where people waited on us hand and foot, but it seemed normal because we were paying them to do so. In this instance, though, Brooke and Preston took on this challenge, as did all the volunteers from Woodstock Baptist Church, who sponsored the retreat, as a missions trip and a ministry to help families like ours who simply needed a break after dealing with the day-to-day struggle of living a life with childhood cancer. They gave up a week’s vacation and paid to come to the beach, not to be waited on themselves, but so they could help others. Like George Bailey says, if every time a bell rings you know an angel just earned his wings, then the Mormon Tabernacle Handbell Choir was busy this past week in Gulf Trace! Thank you, Preston and Brooke! And thank you to Woodstock Baptist Church for sponsoring the retreat and helping Melinda realize her dream for families!
Like I said, lots of fun activities, like the Beach Olympics where all the families and volunteers were split into teams for some friendly competition in categories like Building the Best Pyramid, Obstacle Course, Ring Toss, Egg Toss (which I managed to lose spectacularly …. Does anyone know how to get egg white out of a swimsuit?) Kite Flying, Sponge Race, etc.
Notice how much faster you run when your tongue is sticking out?
Kendrie proudly displays her ring tossing abilities.
Our Team Cheer:
“We’re the Great White
And We Know How to Fight!
Come Near Us
And We’ll Bite, Bite, Bite!”
(maybe you have to hear it in person and see the hand movements to be properly impressed, ha!)
One night we had a luau and hula-hoop competition, which Brayden worked really hard at. Considering she had rarely hula-hooped before, I thought she did a great job and it was so much fun to see her working so hard to figure it out!
One night we had a Talent Show, and all I have to say about this is that no coconuts were harmed in the taking of this picture.
Lots of swimming in the ocean, although the kids’ enthusiasm was dampened when one of the boys in our group got stung by a jellyfish. It took a little longer each day to coax them into the water after that, but once they got in they had a ball, and Brayden proclaimed herself the “Queen of the Jelly-Fish Spotters”. You would have thought she had spotted Jaws, each time she pointed to one floating in the water. And while I’m sure the kids will say the highlight of the week for them was going hunting for crabs each night, can I just say that my son is SUCH a girl?!?! He was so funny, walking along the beach with his flashlight and net, eagerly pointing out the crabs for Preston to scoop into the bucket. But just let one of the crabs (about the size of a nickel, just to give you a mental picture) turn and start running towards him, and he would drop that net and run, SCREAMING, in the other direction! Seriously, these crabs weren’t much bigger than houseflies, and you would have thought it was Attack of the 30-Foot Arachnids! When I wasn’t so busy laughing at him, I was laughing at him.
And for Blaine and me, besides the rejuvenation of simply “getting away from it all”, the highlight was meeting the other families, all of them understanding exactly how we feel and what we’ve gone through. Blaine and I have been blessed to have family and friends help us through this ordeal, but only another family, who has undergone the exact same challenges …. Who has had a doctor look them in the eye and say those words, “I’m sorry, your child has cancer” can truly understand the fears, the frustrations, the joys and the struggles.
I mentioned Jenny and Tre’ earlier, and another family we were able to become better acquainted with, were Mike and Kristin, and their sons Ryan and Brandon. We had previously met them in April at the Camp Sunshine Family Weekend, but got a chance to visit more in Florida. All four of them are such neat people, but Kristin especially is an inspiration. The work she has done, and continues to do, to raise funds and awareness for childhood cancer is so encouraging!
Mike, Kristin, Ryan and Brandon
And of course the best news for us all week is that Kendrie felt well and was able to keep up (for the most part!) with everyone else. You can tell by this picture she was getting a little tired at the end, but shoot, so were all of us!
It was a vivid reminder to us of how lucky we are, when one of the teenage boys at our retreat had to be airlifted back to Atlanta when he began having trouble breathing. To give you an indication of how much fun we were all having, the reports came back that the boy was most upset at not being allowed to return to the retreat! But our thoughts and prayers are with him and his family as his condition improves and he can hopefully return home soon.
Anyway, I hope that gives you some indication of how much fun we had, and a glimpse into the hearts of the wonderful people who worked so hard to make it all possible. It is definitely humbling to be on the receiving end of such kindness. And even more humbling when I realize I’ve never been on the giving end, either. Of course it’s a couple of years down the road, but Blaine and I are discussing the possibility of volunteering as Family Helpers ourselves in a few years and hopefully “paying back” the kindness that was shown to us.
If you happen to be walking along this week and stumble across a large bag full of money, and aren’t quite sure what to do with it, let me assure you that The Lighthouse Family Retreat is a wonderful organization, worthy of your donations. I know I keep repeating myself, when I say how great it was, and that I wish I could explain it better. But it was. And I do.
Love, Kristie, who now has one sock-clad foot on the Beach People side of the map!
Don't hate me if you have dial up. I took over 200 pictures this week ..... believe me when I say I held back from how many I *wanted* to share!!!
ps. Looking at our family picture above, I can understand how you might want to congratulate me on my pregnancy, as one parent did at the "See Ya Later" ceremony on our final morning at the retreat. Let me reassure you that it's 30 extra pounds and bad posture, not any upcoming blessing. On second thought, maybe all those fresh-baked cookies from Preston and Brooke weren't such a good idea!!!
End of Week #8 of DI #2, CCG 1991, Arm D
OK, here’s pretty much the way I see the world:
There are dog people, and there are cat people.
There are sock people, and there are barefoot people.
There are beer people, and there are martini people.
There are city people, and there are rural people.
There are beach people, and there are lake people.
Blaine and I have always been, without a doubt, sock-wearing, beer-swilling (well, him, not me) canine-loving, rural-living, LAKE people. The beach has just never “done it” for us. The sand is gritty, the water tastes nasty, my skin gets sticky, the seaweed is slimy, you have to watch out for creepy crawlies in the water, and did I mention that the gritty sand gets EVERYWHERE????? Plus, it’s just not as easy to water-ski in the ocean!
However, if ANYTHING or ANY VACATION was enough to change our minds, and swing us over to the Beach-People side of the equation, it would be this past week at The Lighthouse Family Retreat in Gulf Trace, Florida. I simply cannot remember a time when our family had so much fun, and felt so cared about by others.
A brief history: Melinda, the founder of The Lighthouse Family Retreat, worked as a pediatric oncology nurse for eight years, but felt God had a vision for her to create a seaside family retreat for children with cancer. In 1999 she resigned from her job as a Pediatric Nurse Practitioner and started working full-time to develop this ministry. The first week-long retreat was held in 2000 through the hard work of Melinda and the *amazing* dedication of volunteers. Although land has been donated for the Lighthouse to build their own permanent seaside facility, for now they rent facilities, offering seven to 10 retreats a year, helping 80-100 families. And for us to have been one of those families this summer …. Well, I don’t think it gets much better than this past week!
I’m not exactly sure I can find the words (now THAT’S a first!) to describe the kindness and generosity shown to my family this past week. First of all, the retreat is just plain FUN! Arts & crafts, swimming, movies on the beach, singing, Beach Olympics, a luau, a talent show; it seems like the activities just go on and on. But we also had plenty of time to simply hang out on the beach, soak up some sun (which equates to slathering sunscreen on our kids twelve times a day!) or relax in our condominium, getting to know the other families.
One of the families we had a chance to become acquainted with is a family I had met online, through Caringbridge; Jenny, Tre’ and Catie. They are such fun and it was a real treat for us to get to know them in person ….. and of course now we’re rooting harder than ever for Catie to win her battle with medulloblastoma, a brain tumor. Kendrie was pretty much OBSESSED with Catie, so it’s good they only live a few hours from us, as I have a feeling that upcoming visits will be in store.
Tre', Jenny, and Catie, with her face painted like a kitty-cat!
But back to the retreat. Not only did Melinda and her crew provide plenty of opportunity to keep us as busy as we wanted to be, laughing, playing, and spending time as a family, they also worked incredibly hard to make this week a time of relaxation and restoration.
Upon arrival, we were assigned “Family Helpers”, a wonderful young couple named Brooke and Preston, whose goal it was to do everything in their power to make the week easier for our family. They helped with basics like laundry, getting us drinks at meals, folding down our beds at night and putting fresh-baked cookies and hand-written notes on our pillows (of course, the cookies were my personal favorite part!) and taking our kids under their wing in a way I just can’t explain. Any time Blaine and I had a parent group or outing to attend, Brooke and Preston were right there, taking our kids on activities and keeping them involved and comfortable. They hung out with us on the beach, took the kids crabbing at night, and tolerated (with amazingly good humor) the kids climbing all over them for six straight days. They’ve been married less than a year, and I’m a little worried they might decide never to have children of their own, after spending so much time with ours!
Blaine and I have been on vacations before where people waited on us hand and foot, but it seemed normal because we were paying them to do so. In this instance, though, Brooke and Preston took on this challenge, as did all the volunteers from Woodstock Baptist Church, who sponsored the retreat, as a missions trip and a ministry to help families like ours who simply needed a break after dealing with the day-to-day struggle of living a life with childhood cancer. They gave up a week’s vacation and paid to come to the beach, not to be waited on themselves, but so they could help others. Like George Bailey says, if every time a bell rings you know an angel just earned his wings, then the Mormon Tabernacle Handbell Choir was busy this past week in Gulf Trace! Thank you, Preston and Brooke! And thank you to Woodstock Baptist Church for sponsoring the retreat and helping Melinda realize her dream for families!
Like I said, lots of fun activities, like the Beach Olympics where all the families and volunteers were split into teams for some friendly competition in categories like Building the Best Pyramid, Obstacle Course, Ring Toss, Egg Toss (which I managed to lose spectacularly …. Does anyone know how to get egg white out of a swimsuit?) Kite Flying, Sponge Race, etc.
Notice how much faster you run when your tongue is sticking out?
Kendrie proudly displays her ring tossing abilities.
Our Team Cheer:
“We’re the Great White
And We Know How to Fight!
Come Near Us
And We’ll Bite, Bite, Bite!”
(maybe you have to hear it in person and see the hand movements to be properly impressed, ha!)
One night we had a luau and hula-hoop competition, which Brayden worked really hard at. Considering she had rarely hula-hooped before, I thought she did a great job and it was so much fun to see her working so hard to figure it out!
One night we had a Talent Show, and all I have to say about this is that no coconuts were harmed in the taking of this picture.
Lots of swimming in the ocean, although the kids’ enthusiasm was dampened when one of the boys in our group got stung by a jellyfish. It took a little longer each day to coax them into the water after that, but once they got in they had a ball, and Brayden proclaimed herself the “Queen of the Jelly-Fish Spotters”. You would have thought she had spotted Jaws, each time she pointed to one floating in the water. And while I’m sure the kids will say the highlight of the week for them was going hunting for crabs each night, can I just say that my son is SUCH a girl?!?! He was so funny, walking along the beach with his flashlight and net, eagerly pointing out the crabs for Preston to scoop into the bucket. But just let one of the crabs (about the size of a nickel, just to give you a mental picture) turn and start running towards him, and he would drop that net and run, SCREAMING, in the other direction! Seriously, these crabs weren’t much bigger than houseflies, and you would have thought it was Attack of the 30-Foot Arachnids! When I wasn’t so busy laughing at him, I was laughing at him.
And for Blaine and me, besides the rejuvenation of simply “getting away from it all”, the highlight was meeting the other families, all of them understanding exactly how we feel and what we’ve gone through. Blaine and I have been blessed to have family and friends help us through this ordeal, but only another family, who has undergone the exact same challenges …. Who has had a doctor look them in the eye and say those words, “I’m sorry, your child has cancer” can truly understand the fears, the frustrations, the joys and the struggles.
I mentioned Jenny and Tre’ earlier, and another family we were able to become better acquainted with, were Mike and Kristin, and their sons Ryan and Brandon. We had previously met them in April at the Camp Sunshine Family Weekend, but got a chance to visit more in Florida. All four of them are such neat people, but Kristin especially is an inspiration. The work she has done, and continues to do, to raise funds and awareness for childhood cancer is so encouraging!
Mike, Kristin, Ryan and Brandon
And of course the best news for us all week is that Kendrie felt well and was able to keep up (for the most part!) with everyone else. You can tell by this picture she was getting a little tired at the end, but shoot, so were all of us!
It was a vivid reminder to us of how lucky we are, when one of the teenage boys at our retreat had to be airlifted back to Atlanta when he began having trouble breathing. To give you an indication of how much fun we were all having, the reports came back that the boy was most upset at not being allowed to return to the retreat! But our thoughts and prayers are with him and his family as his condition improves and he can hopefully return home soon.
Anyway, I hope that gives you some indication of how much fun we had, and a glimpse into the hearts of the wonderful people who worked so hard to make it all possible. It is definitely humbling to be on the receiving end of such kindness. And even more humbling when I realize I’ve never been on the giving end, either. Of course it’s a couple of years down the road, but Blaine and I are discussing the possibility of volunteering as Family Helpers ourselves in a few years and hopefully “paying back” the kindness that was shown to us.
If you happen to be walking along this week and stumble across a large bag full of money, and aren’t quite sure what to do with it, let me assure you that The Lighthouse Family Retreat is a wonderful organization, worthy of your donations. I know I keep repeating myself, when I say how great it was, and that I wish I could explain it better. But it was. And I do.
Love, Kristie, who now has one sock-clad foot on the Beach People side of the map!
Don't hate me if you have dial up. I took over 200 pictures this week ..... believe me when I say I held back from how many I *wanted* to share!!!
ps. Looking at our family picture above, I can understand how you might want to congratulate me on my pregnancy, as one parent did at the "See Ya Later" ceremony on our final morning at the retreat. Let me reassure you that it's 30 extra pounds and bad posture, not any upcoming blessing. On second thought, maybe all those fresh-baked cookies from Preston and Brooke weren't such a good idea!!!
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