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Friday, July 17, 2009 1:25 PM CDT Hi Prayer Partners,
I was blown away when I realized that today....TODAY...July 17, 2009 means that it has been 6 years since our son was diagnosed with neuroblastoma, stage IV. Six years since our family was brought to our knees ...LITERALLY! Six years since a terror like I can not describe took my heart and brain and twisted and contorted them until they were forever changed. I am a different person because of neuroblastoma. I am a different Christian because of neuroblastoma. I am scarred. But you know what? My amazing God got in deeper into my heart through those scars.
I am still a wife, daughter, mother, teacher but I am a cancer mommy. My view of death is so different. I have always believed in heaven and its perfection. But knowing so many children who have left parents on this side of heaven, it has somehow "hardened" me. I have a really hard time being sad for old folks who die. I focus so much on how REAL heaven is and how WONDERFUL it is that I think "Gosh, what took ya so long?" Is that wrong? I even feel a sense of relief for the children I have known who have died, when I know they have struggled and lived a hell here on earth that no one should have to endure. I know heaven is real and I'm glad that if they couldn't receive mercy and healing on earth, that our wonderful God gives it to all of us in death, if you know Him.
Tomorrow I plan to drive to Winder to say good-bye to another cancer mommy, Missy and to her son, Ryan who died within 48 hours of each other. Missy had breast cancer and Ryan had the same kind of cancer as Chandler, neuroblastoma. Ryan was diagnosed about a year after Chandler. Missy was diagnosed a couple of years after that. Both of them relapsed. Both are finally in heaven. Together.
Missy and Ryan leave a dad/ husband, Les. They leave Heidi and Will...a son and daughter/a brother and sister. I grieve for them, not Missy and Ryan.
So I'm sorry if this entry is somewhat of a downer. I do feel a lot of gratitude and appreciation for the 6 years we have had since diagnosis. It is wonderful. Really, really wonderful. Chandler is doing so well, physically and mentally. I think he is ahead of the curve on both fronts. We currently are trying to transition to "Survivor Clinic" from the "Oncology/Hemetology" departments at Scottish Rite. Weird. Good, but weird.
Even though Chandler's physical scars grow less noticeable, the scars on my heart will never fully go away this side of heaven. I don't think I want them to go away. God's in there.
In His hands,
Kim
Friday, March 20, 2009 7:15 PM CDT Hi Prayer Partners,
Long time, no update.
No update, means no problems....just living!
Part of my lack of updates is due to Facebook. It is a wonderful way to reconnect with folks but it really is very time consuming!
The pictures above were taken 5 years (almost to the day) apart. When the one on the left was taken, we were very unsure if we'd be able to take the one on the right. The left one was actually taken BETWEEN transplants, in January 2004. The one on the right was taken this past January, both at St. George Island, FL.
The older one has been on Jim Mac's phone these 5 years so we have looked at it an awful lot. When looking at the newer one, I realize just how much Chandler has grown. For that I am so very thankful.
I pray that we will take these pictures every five years at SGI. Probably by the time we take the next one, Chandler will be taller than his dad and I'm sure Jim Mac's bald spot will be a little bigger. I'm not rushing any of that along...it can take it's own sweet time in coming, as far as I'm concerned. I try my best to savor every single day with both my children.
Hoping Spring's arrival today met you with many blessings and a renewed spirit without itchy eyes and a runny nose. (All these flowers and trees budding out are gorgeous but we DO pay.)
In His hands,
Kim
Thursday, December 11, 2008 2:37 PM CST Hello Prayer Partners,
In case you missed my last entry...last week's scans were "stable/unchanged."
When a student asked me, "Mrs. Booth, how did Chandler's scans turn out?" and I responded, "They were the same as always." She follwed up with, "Is that good?" I said, "Well, we always have 3 choices....they could be worse, the same, or better and of course, I had hoped they'd be better this time."
That pretty much sums up my thoughts on scan results...I wish they were better, but I'm certainly happy that they aren't worse!
I did have the nerve to point blank ask Dr. Rapkin if he had ANY other neuroblastoma patient with Chandler's persistent positivity on the MIBG scan. His response was ,"No, but I can check with Dr. Maris in Philadelphia or "Dr. So and So" in NYC for you to see if they have somebody like him.
*explanation* At diagnosis, Chandler's disease was all over him, so, understandably, he "lit up like the proverbial Christmas tree all over his little body, when he was scanned. But now, four years later, he continues to "light up" in ONE place..his secondary tumor site in his skull. Dr. Rapkin can not explain why. The spot WAS biopsied 3 years ago and NO live neuroblastoma was found, only dead or dying cells(ganglioneuroma) were present.
I keep telling myself there is a reason that that spot still keeps showing up. I don't just don't know what it could be.
I also keep telling myself not to be so darn selfish....I know so many cancer mommies who would trade with me in a minute. I still have my child here with me. Big whoop that he has a persistent spot. Things could be so much worse!
So, that is where we are. Stable/Unchanged. Here with me: excelling in school, making friends, making messes, playing Wii, being "all boy." I really am so grateful.
In His hands,
Kim
Monday, December 8, 2008 11:44 AM CST Quick update on scans:
STABLE/ UNCHANGED on MIBG and CT. I promise a better , longer update soon. I just didn't want to wait any longer to say the results.
Thanks so much for your love and prayers.
In His hands,
Kim
Tuesday, December 2, 2008 9:22 AM CST Hi Prayer Partners,
Hope you all had ample amounts of turkey and dressing for Thanksgiving. As usual, I had too much, but it surely was good! Our Thanksgiving was bittersweet this year, as it was the first without Great Gran (Papa's mom) and Maw-Maw (Jim Mac's mother). They were both missed very much.
Today I am updating from Scottish Rite. We drove up to Atlanta last night in order to be here at the hospital by 8:30 for Chandler's nuclear injection this morning. He took that like a pro and now we are off to find him a chocolate covered doughnut for his bravery.
Just wanted to ask for prayers of at least "stable" scans if not "improved." We will be back for the MIBG scan at 9:00 in the morning and then back again on Thursday morning for CT of chest, head, abdomen and pelvis.
Keep lifting us up!
In His hands,
Kim
Saturday, November 22, 2008 4:55 PM CST Hi Prayer Partners,
In case you aren't well versed in kindergarten spelling, the above reads, "I am thankful that I am not a only child."
Holy cow, when Chandler's teacher brought this little doozie for me to see I almost wept. During Writer's Workshop, the students were to write for what they were thankful. When I asked Chandler about it, he said, "I wrote it like that because I couldn't remember how to spell 'Betsy'." I thought that was pretty smart! Nevermind that he didn't worry about the spelling of the other words in his story....
Actually, the day she brought this came the day after she had had to come talk to me about his behavior. He had had a really stinky , uncooperative day so he had a really stinky and painful reminder on his hiney that afternoon once we got home. He certainly redeemed himself the next day with this!
I am blessed that my children really do love one another. I never planned to spread them so far apart in age...but God had another plan for our family. He made it just as it should be. They can certainly get annoyed with each other, they are regular kids, but Betsy is so patient with him and he adores her. She can get him to do a-n-y-t-h-i-n-g!! My brother and I love each other now....but at their ages, we were much more contentious.
Please keep SuperRyan and Missy Morgan lifted up. Missy seems to be better....but she worries about Ryan with every breath. Maybe you could check Missy's site, www.caringbridge.org/visit/missymorgan and leave her a message of encouragement?
Happy Thankgiving to you all. I bet you know what I'm thankful for...
In His hands,
Kim
Sunday, November 9, 2008 7:21 PM CST Prayer Partners,
My heart tonight is so heavy for our friends, The Morgans. Maybe some of you who read this site remember me writing about them. Ryan was diagnosed about a year AFTER Chandler with neuroblastoma. He went through treatment like a champ but as too many kids do, he relapsed. Along about the same time that he relapsed, his awesome mama was diagnosed with breast cancer. The two fought their individual beasts together.
I sat at the same table with this mama in September at the CURE Luncheon. Her hair had grown back in and she looked gorgeous! However, she was in full "fight" mode for Ryan as her treatment was now over.
This week while her husband was taking Ryan to NYC for a treatment, she went back to her hem/onc doctors with a constant headache and a nasty cough and found out that she has very little time left. Her cancer is back with a vengeance and she has developed a blood disorder. Due to the blood disorder, she went home on hospice. It is hard for me to type that word...hospice...hospice is for OLD people. Old people who have lived out their lives, not young mamas who still need to be in the fight for their adorable little boy.
My friend Jenny said it best...just pray. I sure have.
Ryan's site is http://www.superryan.blogspot.com/
Thanks for reading.
In His hands,
Kim
Thursday, October 16, 2008 12:13 AM CDT Hi Prayer Partners,
Just thought I'd do a quick update. The updated picture is from our recent trip to Disney in Orlando. This particular photo was taken at Hollywood Studios in front of the Chinese Theatre. That day we fought the rain in ponchos but it certainly did not "dampen" our spirits. We had a fabulous time! Chandler's favorite? Splash Mountain at Magic Kingdom...a log ride with Brer Rabbit as the theme. Very cute and thanks to Fast Passes, we rode MANY times!
I have been on the phone today firming up our up-coming scan appointments and doctor appointments. It is good to have time at home (we are on Fall Break) to make these calls. When you have several appointments ,the scheduling can be pretty daunting. Often, the left hand seems unaware of what the right hand is doing. It isn't on purpose, but it is frustrating. Like I said, I am grateful that I am home and have time to call and wait for the return calls.
What I do know is our next trip to Scottish will be on December 2 for a nuclear medicine injection, Dec. 3 for the MIBG scan and then on Dec. 4 for CT scans and a visit with our favorite oncologist, Dr. Rapkin. Of course we covet your prayers for stable/improved scans.
On October 30, Chandler will celebrate a special milestone. It will be 5 years since his neuroblastoma tumor was removed from being wrapped around his aorta. Five years...wow! I read on another website this morning that the most current data available for Stage IV neuroblastoma 5 year survival is 47%. God-willin' we seem to be in that blessed group. Regular folks don't realize how deadly neuroblastoma continues to be, even with all the medical strides that have come along. Not even half live? That statistic is just "our" cancer. We know so many other families who have lost their children to various pediatric cancers. I don't mean to sound preachy but it is so hard to believe that in 2008 the survival rate is still below 50%! It is maddening!
Thanks once again for checking in on us and for praying us through so we can celebrate this wonderful milestone.
In His hands,
Kim
Wednesday, September 10, 2008 8:52 PM CDT Hello Prayer Partners,
I know my updates are much too infrequent. I have had more than one person tell me...."Hey you really need to update!"
Finally, this event made me sit down and upload a couple of new pictures.
On Tuesday morning the principal of our school announced that Chandler Booth's work had been selected to be placed on the Principal's Board of Excellence.
Woooo-Hooo! Chandler's story was about why he liked Sunset School. (He says "bekos it soooo fun"). After the announcements, Chandler went up to the principal's office to receive a special award (see the blue plastic pendant he's holding?) Chandler's first response to his teacher about getting recognized was, "My sister doesn't have one of these!!"
He was so proud of himself and we are too!
When I think back to all that treatment....all those consent forms we signed....all those side effects....
I am humbled. I am humbled and so very grateful that Chandler is just able to be in kindergarten, much less have his work selected for display for a week or so.
That little plastic pendant may not have cost much....but to us it is PRICELESS!
In His hands,
Kim
Wednesday, July 2, 2008 0:28 AM CDT Hello Prayer Partners,
As you probably guessed by the collage...Chandler is playing T-Ball at the YMCA this summer. Tonight was "Trophy Day" so it was extra special!!
I am so very grateful that Chandler gets to do normal things like play ball. He is strong and pretty good-sized fella. I don't care if he's the best on the team...I'm proud he's out there! Amazing!
Chandler got to go to Miss Pat's House for four days last week because of me being gone with Betsy. He was in heaven getting reaquainted with his buddies there. Of course Miss Pat was awesome too. She loves to see her "kids" after they leave her!
Just thought I'd include these tonight. Maybe some of Betsy later!
In His hands,
Kim
Sunday, June 29, 2008 8:30 PM CDT Hi Prayer partners,
To catch anyone up:
1) CT and physical exam by Dr. Rapkin on Thursday, June 19 was FABULOUS! Thank you, Lord!
2) Betsy competed at YMCA Nationals in Sheboygan, Wisconsin and placed third on floor and 11th overall. Best of all, she had a GREAT time. Rode her very first airplane, got to visit with extended family, and scored very respectably against approximately 175? gymnasts at her level(7) from 21 states. Thank you, Lord!
The reason for this update besides those praises is to tell you about what happened to Betsy and I today coming home from her trip.
Betsy and I were getting VERY near home...probably 45 miles from Moultrie coming home from Wisconsin when we stopped for a "potty break" in Ashburn, GA along I-75. We were pulling out of the parking lot when I spotted a black truck with a sign "prayforjoshua.com" in the rear window. Once I got home I accessed this site only to find another young cancer victim. Somehow I had suspected this very thing. The thing I wasn't ready for was that Joshua has just passed away on May 19, 2008 not quite a year from his initial diagnosis of brain stem glioma (brain tumor). He was only 15 years old! Fifteen! He was the middle of three children in the Zalunardos Family. From what I read these folks are strong Christians, but as wonderful as that is, their pain must be excruciating. I applaude them for continuing to tell Joshua's story via the world wide web. Maybe you could go to their site and leave them a brief note?
As tired as I am, I felt pulled to write about Joshua tonight. Not exactly sure why, but well, when I feel that certain nudge, I need to obey and act on it.
Special prayers for Joshua's family and special prayers of monumental thanksgiving for an awesome two weeks at our house!
More about our trip another day!
In His hands,
Kim
Monday, June 2, 2008 8:29 AM CDT *** UPDATE,AGAIN*** June 26,2008
Hey Everyone,
Betsy just completed her very first National Meet here in Sheboygan, Wisconsin and man, did she do well! We are so proud of her! She scored a 9.275 on floor...her first event. That score placed her in third on floor!She did not place on the other events, but still her scores were very respectable. Actually, if memory serves, this was her very best meet in level 7 all year!! She is proud of herself and when asked what she'd like for a "Congratulatory Supper" she asked for a BLT with potato chips.
We will be driving to my Uncle Charles' house in Bowling Green, KY tomorrow(that's halfway to Moultrie) to spend 2 nights then it is home to Jim Mac and Chandler on Sunday!
Thanks for checking in!
In His hands,
Kim
**UPDATE** June 24, 2008
Chandler had a regular, scheduled CT and physical exam on Thursday, June 19 and all was good! The scans were stable and check up was fantastic.
Please keep Betsy and me in your prayers for travel mercies as she and I are flying to Milwaukee, Wisconsin today. She will be competing in gymnastics at the YMCA National Meet! We are so proud of her! She actually competes on Thursday, June 26 , so say a little prayer for her to do well and NOT get hurt! I will hopefully, update from the hotel.
Good Morning Prayer Partners,
My goodness it has been too long since my last update.
So much to tell...hope I don't ramble too terribly much.
I will start with our biggest praise, Saturday, May 31 Chandler turned 6-big-years-old! We had a "slip-n-slide, blow-up waterslide, trampoline, and swing set party" right here in our back yard. The theme was Spiderman and we had such fun! It was quite hot for the parents who were not sliding and getting wet, but Jim Mac had a tent set up for us and a fan blowing so it wasn't TOO bad. *note to self: next year a pool party or an inside party!
The picture above is of us at Lauren's Run and the CURE Family picnic in May. I don't exactly love this picture, but I'm NEVER in a picture so I thought I'd include this one that a friend took of us at the end of the "run" (We walked:). We raised over $450 for pediatric cancer research!!!! Wooo-hoo!! Thank you to all who contributed to our fund-raising. We had such a nice time seeing friends who are all there unified to raise money and awareness for this worthy cause. One friend in particular was not able to attend in person because she is in heaven...Catie Wilkins. However, her mama and sister Izzy were both there. When I saw Izzy I just wept behind my sunglasses. She is at the same age that we met Catie in the hospital. Izzy looks so much like Catie did, she just walks better. I was so excited to see Jenny that I wasn't prepared for my initial reaction. My heart just ached missing Catie. I can't begin to imagine how it is for Jenny and Tre'. I hate cancer.
Chandler has officially "graduated" from Sunset Pre-K. I so look forward to him entering kindergarten. He had a wonderful year with Cindy Montgomery, Stacy Griffin and Terri Payne. Thank you to all three for doing such an awesome job teaching him.
We started VBS last night and for the first time, Chandler got to attend "real VBS." Up to now, he was always in the toddler or Pre-K groups that stay in one room all night with one teacher/child-care provider. He now is in the youngest group that "travels around" to all the rotations. It was so cool to see him come in to my class, Missions Outlook with the others. He listened and answered the first question correctly. PTL!
Betsy, however, is now in the VBX group with the middle schoolers so she doesn't come to my group anymore. It was a night of "firsts". I never have been one of those people who "longed for things the way they used to be" I have always loved whatever stage my child was currently in...especially since Chandler's diagnosis....I love looking forward, while enjoying the present. Last night was no different. I am so very, very grateful for each milestone, each birthday, each new step in both their lives. I know I am sooooooooo blessed to be able to experience them.
One more little story and I'll close this up. Thanks for reading this long entry....I just had so much to tell....
The other day I read a new book to Chandler by Patricia Polacco (excellent children's book author) called "The Lemonade Club". (Not to be confused with the equally wonderful book, "Alex and the Amazing Lemonade Stand")
Anyway, it is a true story of a child who has leukemia in the 5th grade and while she is in treatment, her teacher is dx with breast cancer. It is a great story. At one point, the reader is not sure if the two cancer patients survive and the next page shows stained glass windows, of course indicating a church scene. I asked Chandler (as I would any other child that I was reading this book to..."What do predict is going to happen next?" He responded just as the author planned..."Did she die?" I said," Well let's read more and see." (of course I'd already read it and knew she didn't). I don't want to be a spoiler so I won't tell the rest, but suffice it to say that the story has a happy ending. Once we were all done, Chandler very earnestly then asked. "Mama, did I almost die when I had numbroblastoma?" (yes, that's how he says neuroblastoma.) I very honestly said, "Yes, honey, more than once. But, you didn't. That's why you are a survivor and we are grateful to God for your healing." He had never asked such a thing. It was pretty powerful.
I said I'd stop after this story so I will.
Thanks for checking in on us!
In His hands,
Kim
Thursday, March 27, 2008 8:35 PM CDT Hello Prayer Partners,
It has been a while since my last update, but for good reason. A few months ago I wrote here about my Mother-in-law, Louise Booth's diagnosis of lung cancer. Last week the cancer took her from us but allowed her to enter the gates of heaven.
She was loved by so many as she was "the 4H Lady" in Colquitt County, GA for nearly 30 years. I even had one of MY current parents tell me that she had been her 4H advisor and until she read the obituary, she'd not made the connection to me. Life really does seem to be a circle.
Then Easter came and it seemed surreal.
Jim Mac is OK, but no matter how old you ever get, your mama is still your mama. I guess everyone reading this understands what I mean. I am so lucky, so,so lucky to still have both parents, still in great health. But Jim Mac has them too and so do Chandler and Betsy.
The picture above is one I've been meaning to put here for some time. The tag benefits pediatric cancer through the Joanna McAfee Foundation. If you live in Georgia you can get one at your local tag office for a mere $25. It is pretty and it helps folks, so I say, "Hurry up and get yours!" Hee Hee The silhouette of the child really is Joanna. Her daddy snapped the shot himself! Pretty dog-gone wonderful, if you ask me.
I got an email recently announcing that a new drug was now in PhaseIII trials to protect a child's hearing from Cisplatin. In case you don't know there are several cancers...neuroblastoma, heptoblastoma, medulloblastoma,osteosarcoma.... that treatment requires "boatloads" of a chemo that causes hearing loss/deafness in about half of its victims. This drug would, hopefully, prevent any newly diagnosed child from ever ending up with hearing aids due to Cisplatin ever again. Having cancer as a child stinks badly enough...but dealing with hearing losses after your done stinks even WORSE because it is nerve damage and it never gets better.
Enough of the salespitches for car tags and science lessons about new drugs.
I hope your Easter was meaningful. I know I'm thankful for so many things....but being thankful for the cross is the number one thing!
In His hands,
Kim
P.S. Check out the two new pictures in the photo album!
Sunday, March 9, 2008 9:17 PM CDT Hello Prayer Partners,
Chandler is growing like a weed! Many friends have remarked about this latest picture that Chandler looks TALL! Woooo-Hoooo! of course we won't know until he is fully grown....but I remember Dr. Rapkin telling us how the radiation would likely stunt Chandler's growth and that they would do their best to avoid the spine, etc., etc. At the time it seemed so insignificant....so he's a little shorter? So what, right? That was certainly our opinion. They must've really avoided his spine afterall! We so appreciate their amazing skill! We so appreciate the Good Lord above for even making his tumor location resectable, much less making it easier to fry with the radiation!!!
Last weekend Jim Mac and I got to go to a wonderful Fund Raiser for neuroblastoma in Albany. It was for Patrick Chance's Press On Organization. I think it was very successful. It was beautifully done and were happy to be a part! Actually, it was so cool to be the parents of "the oldest survivor" there. It felt so good to talk of our experiences in the past tense....past tense that is over 4 years ago.....FOUR years!!! Woooo-Hoooo! God is so good!
We also got some really awesome news from Dr. Rapkin's nurse, Stephanie last week. During our last check up in December, it was very late in the day when we finally saw Dr. Rapkin. Dustin, the scheduler guy, was getting ready to leave when we were done and we were trying to hit I-75 before it was totally clogged so we all agreed that I could just call them back and get our next appointment. No problem!
Actually I didn't call right back....I waited like 6 weeks as I knew Chandler wouldn't need an appointment any time before that. I emailed Stephanie to ask if we could finally be on the "every 6 month rotation" yet. All the other nb kids we know that are as far as out as we are have already started....we were still on the "every 4 mo." one due to Chandler's continued MIBG positive scans. Well, when she responded she said.....drum roll please.... that they would see us in JUNE!!!!! Woooo-Hoooo! Besides this showing more confidence on their part that Chandler just may be OK ultimately, it also eases the burden on the old pocketbook for us. Even though we have awesome insurance even one of Chandler's checkups are VERY expensive so dropping one off, is wonderful, financially speaking too.
Chandler continues to be a normal 5 year old. Had a good dental check up last week and is doing well in school. We are so grateful to God and to all of you who have prayed us through so much!
In His hands,
Kim
Sunday, February 3, 2008 8:11 PM CST Hello Prayer Partners,
Saturday marked a milestone in Chandler's "Cancer Walk." Four years ago, February 2, 2004, Chandler was infused with his own life-giving stem cells for the second and final time. Can you believe it has been that long? We can't!
I sent a brief thank you email to Dr. Rapkin but actually, it doesn't begin to express our gratitude to him and all the staff who treated Chandler. The nurses, the chaplains, the other cancer Moms and Dads, and the entire staff of CHOA all contributed to Chandler's good outcome. Of course, we also thank so many of you who "prayed us through" so many days of treatment. Ultimately, we give the full credit of Chandler's cancer success to our Lord Jesus. Thank you, God, for my sweet five and a half year old!
Ironically, I took Betsy to...Hannah Montana/Miley Cyrus Best of Both Worlds 3D Movie today and one of the previews was of Jennifer Anniston, Antonio Banderas and few other Hollywood folks talking about Pediatric Cancer/St. Jude Hospital. The place was packed and when the preview was over, I clapped. I'm sure the folks in the movie thought I'd lost my mind....but since Dr. Rapkin and so many other doctors trained at St. Jude's, and it had been so on my mind about it being four years since Chandler's second transplant, I was just overcome with emotion. Once I got home from the movie, on ABC, on Extreme Make-over: Home Edition they played a re-run of Bouey's story...she was a rhabdomyosarcoma patient. We had watched it the first time it was on. At the end, they dedicated the show to her...she had died at the end of 2007. It was so hard to find that out. Another beautiful little girl in heaven way too soon.
I meant for this to be a short entry so I will close for now.
Thanks again for coming to see how Chandler is doing.
In His hands,
Kim
Sunday, January 27, 2008 5:07 PM CST Hello Prayer Partners,
Hoping 2008 is finding you healthy and happy.
As you can see by the updated photo here, Chandler is doing well. In the picture he is doing his best to do the "Dance, Dance Revolution" on one of those Play Station game systems at St. George Island. Several adults did it too...but I won't be posting any of those pictures here. Too scary!
About 13 years ago 4 families, no, rather couples, started going to St. George Island together. We were only couples then....none had yet started a family! We still go and as our families have grown so has our FUN! Most years we have had the good fortune to actually swim, thanks to heated pools and freakishly warm Florida, January weather. This year the children only got to swim on Friday night, as the very COLD rain came all day Saturday and the heater just couldn't rewarm in time.
We had a great time despite the worst weather. It was so wonderful to get to be together. We watched movies,played Phase 10, cooked, ate,did the Dance Revolution and laughed A LOT!
Thanks for continuing to check in with us. I'll update when we have our next appointment scheduled.
In His hands,
Kim
PS--Please check on our fellow neuroblastoma buddy, Ryan and his mom. Ryan is battling relapse neuro and his mom is fighting breast cancer. His site is www.superryan.blogspot.com I'm sure they'd appreciate a kind word.
Thursday, January 17, 2008 9:02 PM CST Hi Prayer Partners,
This biscuit is for Catie Marie Wilkins. She liked her Cracker Barrel biscuits with LOTS of butter.
Wonder if heaven has Cracker Barrel and Chick-Fil-A?
We miss you, Catie.
Kim
Monday, December 17, 2007 11:40 AM CST ****UPDATE****
Some sweet "somebody" sent Chandler (and us) one of the elves for Catie. It was so sweet that someone did that for us, it truly brought me to tears. Chandler had THE most fun imagining the mischief that "Jangle" would get into each morning. The anticipation was more fun than actually finding him each morning. This picture was taken in front of the train in Sylvester, GA. (Anyone who has read us for a while, you know how Chandler likes Trains) I thought it would be very cool to take this shot in front of the train since it was lit with Christmas lights. On a side note, Jim Mac's grand daddy(Chandler's Great-grand daddy) actually put that train on display more than 30 years ago. Any way, we wanted to publicly thank who ever sent us our "Jangle Elf." He was a welcomed arrival this year and will be for many Christmases to come.Thank you.
Dear Prayer Partners,
This is the newspaper article that appeared in our local paper last week. I think you will enjoy!
Merry Christmas,
Kim
Published December 13, 2007 10:36 pm -
Family tradition keeps lets hope live on
The Rev. Michael Helms
Cancer is never far away from the minds of the Jim Mac Booth family. Jim Mac and Kim Booth’s son, and Betsy’s brother, Chandler, was diagnosed with stage IV neuroblastoma on July 17, 2003, only 47 days past his first birthday.
Neuroblastoma is a devastating cancer. Few children beat the odds from the disease, especially stage IV. Five rounds of very substantial chemotherapy, a six-hour tumor removal surgery, stem cell harvest, two autologous stem cell transplants and 18 days of radiation helped Chandler beat the odds. And prayers! Yes, the prayers of people who prayed to a healing God. The family believes all these were tools in the hands of a healing God.
Chandler looks as normal as any 5-year-old boy. He seems brighter than most, can be just as rotten as any, and is a constant reminder that life is precious. It should never be taken for granted. He is a reminder to those of us who know him that we must live life to make a difference or it will make no difference that we have lived this life.
Four times a year this family must go through the agonizing period of waiting for the results of Chandler’s scans. Each time Kim’s prayer is the same. She asks that the scan is completely and totally negative for any and all signs of neuroblastoma.
As difficult as those days are, they are welcomed compared to the days of other families they know who started this same journey with them, people like the Wilkins family from Guyton, Ga., a small town outside Savannah. Their daughter Catie died this year from her cancer. With the arrival of the holidays, their grief will be magnified.
“I won’t lie,” Jenny Wilkins says of the holidays, “they are all hard. The missing is harder than before. Catie is everywhere, which is wonderful and so hard all at the same time. There are so many Christmas things and traditions that make us miss her even more.”
One of the traditions the Wilkins family developed with Catie was to allow her to enter into the make-believe magical world of the season by waking up to discover that one of Santa’s elves had visited their home. The elf who came to the Wilkins home last year got into all kinds of mischief. He covered their kitchen in flour, pulled the garland down from their entry way, pulled clothes out of Catie’s sock drawer, made himself comfortable for a night of slumber, and spent one night in the freezer because he was homesick and it reminded him of the North Pole. One morning Catie woke up and asked, “Mama, where that silly elf at now? We had soooooo much fun with that silly elf.”
When life is unfair and takes from us a special treasure like Catie, we are left with questions and choices. Though I would never presume how I would respond in such a situation, nor would it be appropriate for me to judge people for their responses to such a tragedy, I do notice that in the midst of such deep grief some people stop living, stop hoping, and stop looking for ways to make a difference in life. Then there are others like the Wilkins family, who in their deep grief, continue to live, continue to hope, and seek ways to make a difference in the lives of others.
In honor of Catie, her parents, Jenny and Tre, decided to scour stores and the Internet looking for cute elves at an affordable price. They wanted to give away elves and share their tradition with other families without breaking the bank. They found an Internet site that looked promising. They were hoping to get a deal for bulk orders. So with some friends praying, they called Host An Elf.
Jenny told the woman who answered the phone how much Catie had loved her elf. Then she explained about Catie’s death and what they were trying to do for some of their friends in the cancer world in honor of her. The woman immediately told her she could have the elves at cost.
Jenny was thrilled! This made her project affordable and she could reach the families she and her husband wanted to reach. She talked to the woman a bit longer and was just about to hang up when the woman said, “You know what? We’re just going to give them to you. We want to donate them.” Jenny was astounded! She couldn’t believe it. She stumbled a “thank you” and told the lady how much it meant to her family to honor Catie in this way, this first Christmas without her.
Jenny still had not come down from her cloud when the phone rang four hours later. It was the nice lady from Host An Elf. She told Jenny she had talked with her partner and they had an idea.
“What would you think,” she said, “if we started a program in honor of your daughter where people could donate an elf to a child with cancer and 30 percent of the proceeds go to childhood cancer research?”
Jenny was speechless! It was as if one of Santa’s elves had been sent on a special envoy to deliver a package for a family who needed something special during this Christmas, a Christmas that will be harder than any other they’ve ever experienced.
This family, like many others, will be mourning on Christmas morning. But this family will not be without hope. Even though Catie will not be physically with them, they have a faith that exudes Paul’s words of those things that never pass away: “faith, hope, and love. (And) the greatest of these is love.” 1 Corinthians 13:13 (NIV)
Even though Catie will not grow up, she will never die because of their love and because of God’s love. Although the Wilkins family is free to grieve and they still do, they have decided not to bury Catie in their grief.
Because of their courage to face their loss, Christmas is coming after all. It’s coming in the midst of grief. It’s coming as they find others who care enough about their loss to help them find ways to bring the magical, wonder-filled moments of Christmas to other children. It’s coming as they care for their 11-month-old daughter Izzy (Isabella), born a mere nine days after Catie’s death. Christmas is coming because this family has found another way to help make it possible for cancer patient children like Chandler Booth to discover the magic of this Christmas season and to have the chance to wake up on Christmas morning and not remember that they once had stage IV neuroblastoma.
(Do you want to buy an elf for a cancer patient? Go to http://www.hostanelf.com; click on “Host an Elf.” Scroll down to the products section. You will see a picture of Catie with her elf, both covered in flour. Click, “add to cart” to donate an elf for $20 to a child with cancer. As you do you are making a donation to http://www.hostanelf.com)
Saturday, December 15, 2007 10:11 PM CST Hello Prayer Partners,
The picture above is of Chandler and the other adorable children in our church's preK choir. They performed Wednesday night for the whole church. I am surprised Chandler actually stood up there and did it! (He is much more shy than his sister, Betsy!)
I promised to tell more about Chandler's doctor visit last week. In case you haven't read in a while, we had our 4 month scan last week and Chandler was able to complete both the CT and the L-O-N-G MIBG nuclear scan without sedation. He's done the CT without sedation several times before....that wasn't a surprise. But the technician, Toni, at Nuc. Med. decided to try no sedation with the long MIBG scan. She was so wonderful....standing right with Chandler, steadying his head, comforting him with reassuring, soothing words, allowing him to wiggle in between pictures, etc. She was amazing!
Because Chandler did both scans completely awake, coupled with the fact he is older, he was so much more aware of what was happening. He must've asked a million questions this trip. Of course he still doesn't remember his cancer treatment, thank God, but he is just more curious than ever before. I tried to answer as simply and honestly as I could. When he asks me if something is going to hurt or if it will taste bad or be difficult to do, I TRY to be positive but truthful. He is unbelieveably cooperative, considering what is asked of him. I know I am blessed in that way....many others too.
Once the second day of scanning was done, we went to see Dr. Rapkin. He looked at our MIBG scan and said, "No change, that place in his head lights up like a beacon." Of course I'd been hoping that this would finally be the scan that revealed No Evidence of Disease...nothing "lighting up". Alas, that wasn't the case....but hey, I'm happy with "Stable." It beats the heck out of "Progression."
Chandler continues to enjoy school and playing so much. I am grateful beyond words that can be typed here that he is doing so well! He surely is far from perfect, but he is here able to celebrate another Christmas with us. I do NOT take that little fact lightly.
I hope to share a newspaper story about "Host an Elf" in my next journal.
Thanks again for your continued prayers and for loving us!
In His hands,
Kim
PS- My mother-in-law, Louise Booth, is taking treatment and doing rather well. Her ultimate prognosis is still unchanged, but taking treatment will likely extend her life some so she can be with us a little longer. For that we are very grateful. I hope the quality of life will improve, not just the quantity. Right now we are grateful for every good day. Thanks to those who have prayed for her and asked about her in the guestbook.
Tuesday, December 4, 2007 9:30 AM CST ***QUICK UPDATE***
Both scans are "stable!" Got through both of them like a champion!!! We are both relieved and proud! The nuclear med scan was not dark, but man, we are happy with "stable." (Actually, Dr. Rapkin referred to the spot on his head as a "beacon.")Seriously, I want to say a quick thank you to all of you prayer WARRIORS out there who interceeded on our behalf. More details about the whole 2 days and how Chandler is now understanding so much more. For now, my bed is calling!
Good Luck to Jack on Friday....he has his scans then! I'm SURE his will be good as well!
Hello Prayer Partners,
I am actually updating at the hospital while Chandler drinks his contrast. He is on the second of the two cups he has to drink. I guess they will take his pictures about 11:30 instead of 11:00am.....all I know is I am READY for tomorrow to be done and for both scans to be Okeee-dokeee.
Once we get today's CT pictures done, then Chandler can eat (no food this morning in case for some reason he needs sedation). After we grab a bite at the deli , we must come back to Nuclear Med. for the injection of radioactive material. That is scheduled to be done at 2:00 so we should be footloose and fancy free by 2:45.
Papa wants to go to a golf store and I would like to maybe go to Lenox to get something. I'd LOVE to hit Talbot's to maybe find something really pretty and ON SALE for Meme for Christmas. Frankly, I don't care what we do. I'm ready for this to be over.
Tomorrow, we don't have to come to the hospital until 1:00 for the MIBG(nuclear scan). However, he isn't allowed to eat for 6 hours prior to this scan so I plan to rouse Chandler and Papa out of bed to go to Chandler's favorite, Waffle House or IHOP to eat a big, hearty breakfast before 8:00am so maybe he won't be starving!!!
This is the scan that we only do once a year and he is always been "positive." I am asking that you pray specifically that tomorrow's scan may be the first one that is completely and totally "negative" for any and all signs of neuroblastoma. DARK,DARK,DARK is our fervent request! NED (no evidence of disease) would be spectacular!!
Thanks for checking in and for your prayers.
In His hands,
Kim
Friday, November 9, 2007 4:46 AM CST Hi Prayer Partners,
Just so you know I did NOT fall off the planet, I felt I needed to update. Also,to regular "Chandler Caringbridge readers:" I may be referring others to come here to read about my mother-in-law so if this journal seems "different" that's why.
Approximately a month ago, Jim Mac's mother, Louise Booth, was feeling extra tired and fatigued. Jim Mac's brother, Bert, really encouraged her to go see a doctor about her breathing.(He is an RN). THAT day the doc put her on 2L of oxygen 24/7. She hated the cannula, but realized that it helped her. She continued taking the O2 and staying at Bert's house, as the whole oxygen, oxygen tubing, tanks, etc. really sorta scared her (it would me too).
Within 3 weeks, she was hospitalized for 6 days, needing her oxygen upped to 6L, taking breathing treatments several times a day, along with prednizone and other drugs to get her breathing better. All the while, the pulminologist is performing X-rays,lung biopsy, CT's, and a PET scan. By
the beginning of November, all the tests revealed small cell carcinoma in her lungs.
Last night in the ER, the pulminologist removed quite a bit of fluid from her lung(which they will test for presence of cancer cells too) which did help her breathe better. She HAS seen a medical oncologist as well as a radiation oncologist both in Thomasville on Wednesday,Nov.7. She also is leaning on our friend, "Dr. Bobby" (Dr. Hawes) here in Moultrie for her other medical conditions....diabetes, etc.
She is very tired and having to make a lot of VERY difficult decisions.
Currently she is staying at her son, Bert's house at:
1229 3rd St., SE, Moultrie, GA 31768
229.985.4006
if you would like to send a card or something. Of course if someone wants to leave her a message here on Chandler's guestbook, I will gladly share that with her.
Just so some of you who may be reading this and don't already know....Louise is retired from the University of Georgia Extention Service. She was a Home Economist for 30 years and spent many, many,many summers at Rock Eagle 4H Camp, helping 4Hers with their projects, winning awards for those projects, as well as taking the students on all sorts of trips to UGA football games, Disney World, Six Flags etc.
She is a pretty "cool" Maw- Maw to Chandler, Betsy, Jarrett and Madison as well as a "cool" Mother-in-Law to Angela and to me.
Just pray for Jim Mac and Bert too as they ache to make their mother feel better.
In His hands,
Kim
PS- Angela is doing a tremendous job caring for Louise as we all try to be at work. Love ya, Angela!
PSS- Chandler is doing wonderfully! Scans scheduled for Dec. 4 &5.
Saturday, October 20, 2007 8:05 AM CDT Good Morning Prayer Partners,
As you can see, we went to see Thomas the Tank Engine yesterday at Veteran's State Park at Lake Blackshear. We were able to ride the train as well as participate in all the activities associated with him. They had all manner of tents set up with various activities such as face painting, different train sets set up on low tables, story-telling, Thomas videos on a big screen, and of course the gift shop!
It absolutely FLOODED on Chandler and me as we drove from Moultrie, but really, once we got to the "train station" it really just sprinkled....just enough to really make your hair look *extra* nice (especially since I kept putting on and taking off a hood). Truly, that was SO minor compared to the nice day we had with Meme,Papa, Uncle Chip, Aunt Amber, Nathan and Emma. I wish you could've heard Chandler as he saw Thomas actually on the track for the first time. He was amazed to put it mildly.
Well, I must go get ready. Jim Mac and I are taking Chandler to Moody AFB in Valdosta this afternoon to see the Thunderbirds do an airshow. Lately, Chandler says he wants to be a pilot. I see an Air Force Academy appointment in his future...don't you? Hee Hee! Seriously, I'm just ever so grateful to be able to let myself joke about Chandler even going to college.
Please keep our cancer buddies in your prayers.../visit/zacharysingletary.../visit/braydenharrell...www.superryan.blogspot.com just to name a few!
Very, very gratefully in His hands,
Kim
Monday, October 15, 2007 8:07 PM CDT Hi Prayer Partners,
Just thought you'd like to see the "Student of the Month" for October up close and personal!!!
This photo was shot at the Student of the Month recess. Pictured here is our Pre-K son with his principal, Mr. Owen. After this recess, Chandler and Mr. Owen were "big buddies."
If any of you know Chandler personally, you know what a HUGE surprise....uuuh, I mean... honor this is for him. He is a sweet boy, but he is 100 totally, fully ALL boy. He never seems to walk anywhere...it is always a run. Of course when I think about how cancer once filled his bones, it makes that running seem "not quite so bad." (I can think of at least half a dozen precious mamas who I know personally who would prefer "running in the hallway" as a problem instead of the grief they must face daily.)
Anyway, I wanted to share Chandler's good luck....uuuhh... I mean accomplishment with all who still come here to read about us.
We are so very blessed!
In His hands,
Kim
P.S. We are riding Thomas the Tank Engine this Friday on the SAM Shortline Railroad in Cordele, GA. Hopefully, I'll have some good pictures to share!
Thursday, October 11, 2007 8:52 PM CDT Hi Prayer Partners,
I know, I know, it has been much too long since my last update. So much has happened....
Quiet Heroes Luncheon in Atlanta
Fall Festival at school
Me thinking a "cowboy" is lookin' pretty good walking in the Huddle House and realizing I TAUGHT HIM!! Ooooh gross! But that story is only to be told in person and not on the internet! Ha Ha
Seriously, though, the Quiet Heroes Luncheon in Atlanta was amazing. Kristin and her CURE posse raised an unbelieveable $270,000 for research! I was able to be with my cancer mommy friends,sans Gwen's mom, Tab:( . I was introduced to P.F. Changs restaurant and I got to once again visit IKEA!
The Fall Festival at Sunset was once again a total success. If a prize were awarded for the booth with the l-o-n-g-e-s-t line, it would HAVE to be mine. My annual "Win-A-Goldfish" Booth is always so popular and yes, my own personal children each came home with one goldfish each. Chandler named his "John" and I'm not sure what Betsy finally named hers. They'll both be flushed pretty soon is my prediction....hence the name "John" might be more apt than Chandler realizes.
Today was our highschool's homecoming parade. If it is one thing I dearly and most truly LOVE about living in Moultrie is the parades. There are two per year...the highschool's Homecoming Parade and the Christmas Parade. They are pretty much identical: highschool band plays, cheerleaders cheer going by, and floats made by area churches and schools stroll by ...all going around our gorgeous courthouse square that has been safely blocked off by police. The whole darn thing lasts about 20 minutes, but it is such a sweet tradition. Today the weather was absolutely PERFECT to enjoy a parade.
Chandler, Betsy and I went by Sonic to get drinks and a snack to enjoy during the parade and then we made our way to the courthouse square to park. You see, you can park your car actually on the street and watch from your tailgate. I had just called Jim Mac to come meet us, moved Chandler from his carseat to the back of my minivan. I fixed him his snack/drink to get ready for the upcoming festivities.(Picture a picnic in the back of my minivan.) Chandler finished his nuggets so I went to the side door to get a bag to put trash in. (The parade is literally 2 minutes from starting) I walk back to our little "picnic" area and Chandler is no where to be seen. NOWHERE, I tell you.
I tried not to panic as cars were still coming by (police have not yet stopped thru traffic) and Chandler had just vanished...in SECONDS!!! In a moment or so Betsy spots him, running across the courthouse lawn BY HIMSELF! Now, we do live in a safe little town....but NO WHERE is safe enough for a 5 year old to be that far from his parent. Betsy ran and caught him and I popped his hiney. We were able to get out of our perfect parade spot and on the road to home just as the band started to play. No, we absolutely were NOT staying to enjoy a parade. Chandler KNEW he had done a major boo-boo when we didn't stay for the parade. I haven't really gotten totally over the terror yet. I know he is impulsive....but gads, he has never done such before. I bet he doesn't try anything like that again for a while....at least I hope not. My heart can't take it! (Neither can his hiney.)
Well, that's all for now. Oh yeah, the picture above was from last month when we were lucky enough to go to an Atlanta Braves game. At Turner Field they have a baseline for kids to pretend they are real players. Notice I caught him with BOTH feet off the ground at the same time. Pretty cool, huh?
In His hands,
Kim
Sunday, September 16, 2007 2:18 PM CDT Hi Prayer Partners,
Of course I know this Caringbridge site is for Chandler, but today's journal is about Betsy!
Last night Betsy had her best gymnastics meet ever. This was her first meet at an "optional" level. Bless her heart, she has worked for many years trudging up through the compulsory levels and now she gets to put some of her own pizazz into her routines.
She started out on bars which is a weaker event for her, and scored well. As each event passed, each score got progressively better until beam, which was the top score of the evening!!! Once all the event scores were added up, her coach told her that she has earned a spot to compete at YMCA Nationals in Sheboygan, WI in June '08!!! Wooo-Hooo!
This was the first meet of the gymnastics season (actually, it seems like it never stops because they never take a break) and she has already qualified for the "big event" at the season's end. Thanks for indulging this very proud mom. We were all there to cheer Betsy on...see Chandler in the foreground? (The picture where he was jumping up and down for her was blurry because I was laughing at him and couldn't hold the camera still.)
I am getting very excited about the upcoming Quiet Heroes Luncheon at the end of the month. It is the third annual event that my friend and fellow cancer mommy, Kristin Conner(with several others) has put together to raise money and awareness. See the web site, www.quietheroes.org
Chandler is still doing well. Thanks for continuing to check in with us.
In His hands,
Kim
Thursday, September 6, 2007 11:44 PM CDT Prayer Partners,
Last weekend we had the pleasure of getting together with my uncle Walt for a "surprise" 50th birthday party.(Walt is a cancer survivor too!) The party was held outside on Sunday evening. The weather was unbelieveably nice ....nice breeze....kept the gnats away...etc. The party was a grill out party with hotdogs and hamburgers, chips, riding the 4 wheelers, etc. You get the picture.
Chandler was sitting in his lawn chair eating his second plain hotdog and talking with MY first cousin (does that make her his SECOND cousin?) Anyway, she is newly graduated from UGA, gorgeous, and sweet. It is no wonder Chandler was enamored with her. They were observing the almost evening sky when Brittany said something about how the clouds looked so thick....like you could walk on them. Chandler told her that he had a friend who DID walk on those clouds. She asked him "What is his name?" to which he said, "She's not a boy, she's a girl and her name is Catie." I was already listening, but man, I was straining not to miss whatever was coming next. He said,"You know, she was my friend who didn't have any hair. But she died so now she is up there in heaven with Jesus and not sick anymore." "She walks on those clouds all the time."
He told her this all so matter-of-factly. The funny thing is, I have NEVeR told him that Catie is gone. Betsy says, "Mom, you talk on the phone....he's not stupid." I guess she's right. My parents say that they told him one time when I was dropping off pull tabs at the Ronald McD House because when we drove up he said....."Oh, I want to go inside and see Catie, this is HER house." and they said "No, Chandler she is in heaven"....assuming I'd already told him.
However he found out....it doesn't matter. What does matter is that he knows she is with Jesus and she is not sick anymore. I do find comfort in that. I just wish I could take some of the hurt away from her Mama and Daddy.
September is Childhood Cancer Awareness Month. If you can, watch this 4 minute movie on YouTube. It is AWESOME!
http://www.youtube.com/watch?v=AGS4yE5v9rM
If you can't just click, then copy and paste. I promise you will be glad you did.
In His hands,
Kim
I still miss Catie and I'm glad Chandler remembers her. She was suppose to marry Chandler one day.
Tuesday, August 28, 2007 8:26 PM CDT Hi Prayer Partners,
I wish I was as techno~savvy as many of my Caringbridge Friends. Changing the opening picture on this website sometimes is frustrating beyond description. I chose to put this picture up for two specific reasons:
#1 Labor Day is coming up and I'm sure as long as the weather holds out.....this is what we will spend much of the holiday doing! Yippee!
#2 This is the "talent" Chandler talked about at our church talent/gong show last Sunday night. Seriously, no one got "gonged"....it was just a new,inventive way to have a fun time at church on a Sunday evening. I think it brings us closer as a body of believers to find out things/special talents each of us has.
Our idea was for Chandler to walk up in front of the audience wearing his bathing suit and demonstrate (on the carpet of course) how he stands on the sled Jim Mac made and "skis" behind Papa's boat. We rehearsed him saying things like "You have to hold on and if you lose your balance, they circle back and pick you up, etc." Plus, Jim Mac's talent of woodworking also gets a little highlight....Ya know, it is a talent show. I had prepared a brief slideshow of pictures of Chandler skiing to be played on the screen above where he would be talking...hence, "my talent" of taking pictures.....it is a talent show, ya know.
Well, once all those folks got to watching Chandler he wouldn't talk. So Jim Mac had to and he did a nice job.
Jim Mac also showed the "Chandler Chair" (see picture in "view photos") that he made several years ago so we could manuever through and all around Scottish Rite Hospital all the while Chandler was on continuous IV's during those first days fighting his cancer. (Remember, it was routine to be on IV's for 72-84 hours straight!)The hospital provided wagons, but I was too clumsy with those. The "Chandler Chair" proved to be a sanity~saver for me and for Chandler! Man, we got GOOD wheeling all around that place! That's part of the reason we met so many wonderful people there in the hospital. People would see us walking up and down corrider after corridor. Anything to get our minds off the wretched poison that was going in his body.
But my point in sharing that little reminder is... when Jim Mac was showing it and explaining how we used it....Chandler asked, while still in front of everyone,wearing his bathing suit, "Daddy, what is that?" I guess we'd just put it up in the attic and he had not seen it in over 3 years and since he's only 5 now, he did not remember it at all. Meaning....he probably doesn't remember all the IV's/chemo he was taking while riding the pole on his "Chandler Chair." Isn't God good?
I'm so glad Chandler DOESN'T remember, but I surely do. I thank God everyday for one more day.
Have a safe and healthy Labor Day Holiday!
In His hands,
Kim
Saturday, August 11, 2007 10:25 AM CDT Good Morning Prayer Partners,
I am one very grateful cancer mama. Let me explain.
Thursday Chandler started Pre K at my school. Of course this was a very momentous occasion, as it is for all children and their moms and dads. Starting "real" school is a milestone. Anyone can understand that. But for the parents of a cancer survivor, it is particularly special.
That said, once I returned from walking him to class, my co-workers asked me, "How did you do? How did he do? Did you cry? Did he? Are you overwhelmed he's finally here at school? Yadda, yadda,yadda." I said ,"No, not really. He's fine and I'm fine. I haven't cried a drop." All the while thinking....I must be some kind of "hard-hearted Hannah" since it had not entered my brain to feel anything but happiness and tears were the farthest thing from my mind.
I did check in at noon (when I had a break ) to make sure all was well, and it was. No big deal.
Once school was over, I retreived Chandler from his teacher right after school in order to meet my parents, Betsy and Jim Mac so we could start driving to Tallahassee to see Thomas the Tank Engine LIVE on stage at the civic center by 7:00pm. Our plan was flowing smoothly. We left Moultrie in plenty of time to drive, eat supper at Olive Garden, and make it to the show.
Once we left the restaurant the weather had changed from record-breaking heat to a monsoonal rainstorm complete with wind , thunder and lightening. But even in all this rain, we were able to park 10 feet from the door (Thanks to Meme's handicapped parking pass) go right in. We found our seats, which were PERFECT, and sat down to enjoy the show. Our bellies full of Italian deliciousness, perfect seats, perfect parking, perfect day at school, perfect drive down, perfect in every way. Chandler's eyes are already fixated on the performance. He is "Wooo-Woooing" on cue when the conductor is asking the audience to participate, he is holding his cheap Thomas flashlight-thing we, like all the other parents, bought on the way in to the show. You get the picture.
Then Jim Mac is trying to get me to look down our row, past his seat, without being TOO conspicuous. I tried to see what he wanted me to see, and I, to his chagrin, wasn't seeing it. And then all of a sudden *I did*. Only 2 or 3 seats down from him was a 5-6 year old boy, bald as an onion, wearing a hospital mask. I laid eyes on him and all that crying I WASN'T doing before... all came flooding from me like the monsoon outside. It overwhelmed me like a tidal wave of gratitude. It was like the last 4 years all flew through my mind in an instant. Here we were, our whole family, enjoying a show together. No central line, no mask, no upcoming treatment to make him sicker than a dog. He had just had his first day of school and it went well. Plain and simply, he was ALIVE! Gratitude, over-whelming gratitude is the only way to describe my messy emotions at that time.
At intermission( I had composed myself by then) I asked his mother about him. I found out his name is Zachary Singletary and he had medulloblastoma (like Catie ,William O and Victoria). I aslo found out that he DOES have a caringbridge site, it is /visit/zacharysingletary and once we got home Thursday night, I was able to leave them a message on his guestbook. Maybe you might also?
Well, thanks for continuing to pray for Chandler and for coming to this site for updates. I know it is your prayers and messages left here that have helped us so much along Chandler's cancer journey.
I'll update soon with dates of our next scan including our BIG nuclear scan that is coming up in late Nov or early Dec.
On another note, please pray for Ryan Morgan (www.superryan.blogspot.com/) and his mom, Missy. Ryan is battling neuroblastoma relapse and she has this week been dx with breast cancer. Things must look pretty overwhelming for them right now.
Thank you again for enduring such a lengthy update.
In His hands,
Kim
Sunday, July 29, 2007 7:39 PM CDT FIRST DAY of Pre K! Isn't his teacher gorgeous????
He's having a great day!
Today my sweet ,cancer-beatin' son will finally enter the hallowed halls of Sunset Elementary. Will Mrs. Montgomery and Mrs. Brown and Sunset Pre-K EVER be the same????? Hee Hee Hopefully, I will get some good pictures of the first day to post here. (See above) Also, we are headed to Tallahassee tonight to see Thomas the Tank Engine LIVE on stage. Should be a busy but wonderful day! Thanks for coming back for more updates!
Dear Prayer Partners,
In case you're checking on us about Friday's CT scans and hearing tests....they were all good. Technically, the CT was "stable" as Dr. Rapkin explained, they don't say "normal" since his skull isn't normal because it used to have cancer growing on the underside of it and it has left him with bone damage there. Also, since that cancer spot was radiated, it will never heal up and appear "normal" on a scan, not to mention that everybody doesn't have a small plate and screw in their skull from when they biopsied the skull years ago. So "stable" is excellent with us.
The hearing test was so much better than I'd anticipated.
The backstory of Chandler's hearing is that he , like all stage 4 neuroblastoma kids, took a boatload of chemo, a couple of which cause significant hearing loss. Suffice it to say, we know SEVERAL neuro kids who wear aids and frankly, I believed before it was all over that Chandler would also. Not that I wanted him to at all, mind you, but hearing aids seem pretty darn insignificant when facing death. Knowing this, the doctors checked Chandler's hearing before treatment, through treatment and after treatment, but because he was 14 months old when he started and was only about 22 months when we were done with chemo, getting an accurate response-type test was rather difficult. As I've already said, I was resigned to the fact and expected hearing aids to be just part of our survival.
Yet, I truly NEVER saw a loss in Chandler. I'd always heard that speech was the window to hearing and Chandler's speech was ,if anything, beyond what was age -appropriate. I would talk to him with my face turned away, and he would answer appropriately. I would talk to him with the radio on, still appropriate answers to questions. Other people would casually remark about how well they could understand him and that his vocabulary was quite extensive. I knew he wasn't just "remembering" these words from before chemo....he had to be acquiring new language. New language that he pronounced appropriately and clearly. Was it just hopful thinking that he could hear??? I really didn't think so...did I? Was I kidding myself? I knew he'd had all that cisplatinum and carboplatinum, so when I asked, Dr. Rapkin suggested doing a test on him while sedated, to check to see if the nerve hairs in his canal were getting the messages to his brain.
Yes, finally, a test that didn't depend on his raising a hand in a sound-proof booth. Halleluah! He passed the test. I was elated, overjoyed, and grateful beyond words. Whew! But of course there is always that caveat with cancer, the loss may show up later...UUUggghhh! I hate it when they say that! So when Chandler did not pass a screening administered by our school LPN when I registered him for preK at my school 2 years after that test, I was again nervous. Had I seen him start to lose ground in his speech? No. Had I noticed him speaking louder? No, he could be very loud, but also appropriatly soft when whispering, and understanding what was being said when being whispered to. Was this screening very carefully administered, in a sound-proof room with very sensitive equipment by a hearing professional? Again, a big, fat no. Nothing against our school LPN, at all. But she quickly told me when she gave me the results that this was only a screening, just in her not-very-quiet office, with equipment that hasn't been updated since WWII. (maybe not that long, but truly probably not since the 1970's.) Still, I did not like that imaginary *asterisk* being by his name when he entered school...he didn't "Pass" the screening. And, being a careful mother, if there was something wrong....we needed to deal with it sooner rather than later. So I asked Dr. Rapkin for another referral for a "real" hearing exam at Scottish again.
Friday's test was the "real" test and he PASSED. Once I shared my concerns with the audiologist, she asked another colleague to repeat the part he'd "failed" at the screening and he again gave this hearing specialist the same result....NORMAL hearing. Praise the Lord!
If you've read this site for any length of time, you know how I feel about that sweet word, "Normal." Not saying that, if he'd needed aids he would be somehow "abnormal." Like I said before, I'd accepted the idea of hearing aids. So many of our nb friends live perfectly normally with their hearing aids, so I don't want to be misunderstood. But anybody with Chandler's history, would be tickled not to have to have that as a consequence. Frankly, I hope and pray everyday that he never has another late effect of any kind, no matter how small. I pray that for all our cancer friends. However, reality is with cancer there are many, many possible negative consequences of the treatment he received, including the fact that some drugs actually CAUSE another cancer, radiation also CAUSES cancer, not to mention the fact that we live with thoughts of the neuroblastoma returning.
I don't want to leave you with such a "heavy" journal entry, but this is our reality, as it is with all our fellow survivors. I don't wallow in it....but it is always there. So I'm thrilled with another "stable" CT and another "normal" hearing exam.
I need to begin focusing on Betsy starting middle school and Chandler starting PreK (with no asterisk by his name, I have the documentation to prove it.) I need to focus on my new 5th graders coming and getting them sufficiently prepared for the CRCT in social studies and science. I need to focus on the fact that Chandler is very much actively living. (If you know Chandler, "active" is a pretty accurate description of him.) I am grateful to God for all of this.
Thanks for hanging with me through this detailed entry.
In His hands,
Kim
PS- We went to Tallahassee Saturday for lunch and a bit of "Back-to-school" shopping. Upon arriving at Target, Betsy shouted, "Look at that rainbow!" Jim Mac and I marveled at the intense colors...we'd never seen Violet in a rainbow so distinctly. Fotunately, it was situated in the sky in such a way that we could see the whole arc. Chandler said there were leprechauns at the end.(How'd he know that?)leprechauns in a pot. Hey what about the gold? Having a day together with our family....that's gold!
Friday, July 27, 2007 8:56 PM CDT Hello Prayer Partners,
All is well! The Ct's were all stable and his hearing test was....are you ready for this......NORMAL!!!
I am tired from not sleeping the night before.....I never can....and then driving through Friday traffic from the north end all the way home. (Traffic was only bad until about exit 218). Moultrie is still a long way from Scottish Rite traffic or not!
We saw a nurse practioner, Pam, for the first time today and liked her a lot. She was very personable and seemed notably interested in learning about Chandler's cancer story. Of course we missed seeing Dr. Rapkin but were lucky enough to run in to Dr. George, Morris, Genair, Sarah and Jenny our superb CT picture-taker.
I so appreciate the calls I received from so many sweet, caring friends asking about the scan,tests,etc. I also appreciate those of you who have checked this website to see how the scans and hearing tests went. You all give me strength that I can't explain. And I was lucky enough to get to see my friend, Julie. She was at therapy when we were waiting to see the audiologist and then her son had to come up to Aflac floor to get his chemo while we were there getting checked out by the nurse practioner. Meeting Julie is one of the good things about cancer. She is an awesome Christian, friend and seeing her control her FOUR kids better than I could my two, she's a heck-of-a-mother too!
I appreciate my friend, Staci for riding to this appointment with me. She was so sweet to let Papa and Meme have a break.It is a lot of waiting and she was very understanding and such a comfort for me.
More later!
In His hands,
Kim
Thursday, July 5, 2007 9:23 AM CDT I thought I should add a quick note here that on Tuesday, July 17 marked four years since diagnosis, making it 3 years and 4 1/2 months since the second transplant was completed. (We still had radiation and accutane after that, but Dr. Rapkin always counts ours from the end of transplant #2.)Life is still so wonderful...be praying nothing on next Friday's scan changes that.
Hi Prayer Partners,
Yes, that is Chandler behind Papa's boat! Jim Mac made the "sled" he is riding. Jim Mac said he started skiing on a similar beginner sled when he was 5 years old too. It is easier than skiis and lets the beginner practice the "getting up" and balance behind the boat. Betsy and Chandler both aced this sled by getting up every time they tried. I was amazed, as I remember all the falling I did when learning to ski. Now I'm so old, fat and out of shape, I'd rather take pictures of my children doing it. ( I did try to ride the tube, as this takes no skill to ride at all, but I couldn't manage to get on the darn thing!Too clumsy!)
July 4,2007 was full of water play, sun, ribs, hamburgers, jet ski-riding,fireworks, and best of all, family! We went to Meme and Papa's lake house Monday night and stayed until last night.We got to be with my brother and his family as well.(see his wife and daughter in back of boat with Jim Mac and Betsy...Papa steering) We are dog-tired this morning. Other than some clothes-washing, I don't see myself being very productive today....unless updating this website counts!
Please remember us on July 27 for our next scan and hearing test. These are both regular, scheduled appointments. However, Kaitlyn, our nb buddy in Australia, has gotten some relapse news last week. She was diagnosed right with Chandler and went through treatment simultaneously. She had just celebrated 4 years since diagnosis, and now this. She joins Dustin, Hannah and Ryan (and too many others) in fighting again.
I Hate cancer.
In his hands,
Kim
Tuesday, June 5, 2007 10:04 AM CDT Hello Prayer Warriors,
So sorry for this long delay in updating.Do look in the photo album, I've added 3 new pictures!
Thanks to my sweet friend, Jenny (mom to Catie and Izzy) for updating on our last doctor visit. Yes, our scan was good and we are due for our next one on July 27....right before I have to report for work! This one won't be with Dr. Rapkin, it will probably be with one of the assistants. I take this as a good sign that Dr. Rapkin doesn't even think HE needs to see Chandler every time now. I think (hope) this means Dr. Rapkin's worry-factor is at an all-time low. They will check Chandler's hearing again. We know he has some loss, just hopefully, not so much as to need intervention. But of course, we will do whatever it takes.
May rivals Christmas time for busyness....Betsy "graduated" from elementary school and is readying herself for middle school in August. I will miss having her at Sunset with me. She got many awards at Honors Day. We were very proud.
Chandler also "graduated" from our church's preK program. He did so much better this year than last at singing his songs/participating at the ceremony. Last year he would've gotten the "Stage-Fright Award" if there was such. This year he delighted us with a very LOUD and e-nun-ci-a-ted version of God Bless America among others. He still breaks into song when he sees an American flag. I love it!
Chandler is also playing T-ball at our YMCA. It is such a comedy of errors! Chandler likes practice better than the games. At practice, he is constantly working on a skill and quickly changing activites,every7 minutes. In the game, however, there is a lot more "down-time" and Chandler bores VERY easily. He is likely to be rolling around in the grass or running in to some unsuspecting kid just to be doing something. It drives me crazy!! I want him to have his head in the game!!! I promise, I'm NOT one of "those" baseball mothers who screams the whole game. I just want him to pay attention. I definately see Concerta or some other ADD drug in his future!!! Frankly, I'm glad they make it.
Last Wednesday Chandler was watching TV when a DisneyWorld commercial came on and like every other American child, he said, "Can we go to DisneyWorld?" I happened to be on the phone with my mother who heard his request and she said, "Why don't you go?" I thought about it...got off the phone...looked on the internet...called Jim Mac at work...asked him what he thought about us going for the weekend....then I called and got us a room for Friday and Saturday nights!(I couldn't do it online....it was too close to the date). And yes, we left for Orlando about 50 hours later.
It was the BEST trip ever. Partly due to fantastic weather (no, Tropical Storm Barry did not mess us up)and nice accomodations that did not cost a fortune (All-Star Sports) and some really good advice from some friends of ours who really *know* how to *do* the Magic Kingdom with minimal waiting in line and getting maximum ride and show time!!! Those Fast Passes really make for a much more enjoyable trip! Plus, the fact that Chandler was tall enough to ride everything, made it so fun for him. He enjoyed every show, every meal, every ride, including Space Mountain. Yes, he turned 5 last week and he rode Space Mountain!(Good thing he is tall for his age). I rode the whole ride reaching up to keep my hand on his shoulder as reassurance (for me, more than him). The ride is so loud and you sit one in front of another rather than beside each other so, I had no idea if he was crying or screaming to get off or what. As soon as we came to our stop....the first words out of his mouth were..."That was awesome! Can we ride it again?" I was so relieved and thrilled beyond explanation at that moment. He is one brave little fella! I guess beating cancer makes ya that way!
We also went to MGM which was a first for all of us. We enjoyed it tremendously too. There, Chandler's favorite ride was The Tower of Terror. Betsy liked the Rock-n-Roll Rollercoaster there. Both of them are not afraid of too much! My favorite was the Little Mermaid show. I know, tame compared to the coasters, but so well done!
Vacation Bible School is this week so we have been busy with that as well. Chandler knows all the songs and Betsy is doing a part in the little skit.
I don't mean to brag....I really, really don't. I'm just grateful that we are able to participate in all this fun stuff. Getting to go to school and the honors days/graduations, playing T-ball, taking a quick trip to DisneyWorld, attending VBS are all things that I once would've taken SO for granted. Now, I don't. I thank God for letting us make wonderful memories together. When I think of our friends who are either still in treatment or have lost their cancer battles, I cry that they can't do these things. Their normal just isn't normal anymore. It makes me so sad. I thought about Catie Wilkins 100 times while we were down in FL. I saw a kiosk where they would paint faces and I could just see that picture of her with her brown skin painted in glittery pinks and greens.
Well, that's enough for today. Hopefully, Jim Mac can help me add a picture from Disney to the photo gallery once we get the disc.
In His hands,
Kim
Friday, April 27, 2007 2:48 PM CDT I just talked to Kim and Chandler's scan was STABLE!!!!! Chandler was able to be scanned without being sedated, so Kim is hoping that for his next scan he won't have to go NPO (w/o food). Way to go Chandler!! Chandler's physical exam was good and Dr. Rapkin was very pleased with what he saw. I'm not sure how long until their next appoint or scan, but I bet Kim will let us know soon. For now, they're exhausted, but headed home sweet home.
Thanks for checking in... Keep praying for Chandler and all the other kids in this fight.
=)
Jenny (Catie's and Izzy's mom)
Thursday, April 19, 2007 8:17 AM CDT Good Morning Prayer Partners,
Chandler is still a bike-riding fanatic. Before we know it, he'll probably trying to do tricks or something! Thanks for the sweet congrats on this milestone.
As I already said before, there are two very special kids who are really in need of prayer. One is Ryan Morgan. We have known Ryan for about 3 years or so. He went through all the same treatment and transplants that Chandler did....just a year later. His parents are living our worst nightmare...relapsed neuroblastoma. You can get to his site by going to www.superryan.blogspot.com
The other child is Nathan McLean. I think he is 3 and is being treated for stageIV neuroblastoma in Louisville, KY. He is newly diagnosed and I'm sure his parents are still in that "deer-in-the-headlights-stage." I do not know them personally, the aunt and uncle live here in Moultrie(that's my connection). Nathan has a new Caringbridge site. I'm sure his parents would gain a lot of strength from you if you choose to check on Nathan. His site is: www.caringbridge.org/visit/nathanmclean
Please continue to tell others about the Pediatric Cancer car tag. Just pay your $25 and place your order at the tag office or by computer, so we can get 1000 orders so those prisoners can get busy!!! (making our tags, I mean.)You can read all about it at www.supportcancerkids.org
Thank you for the contiued prayers. Scans and check up Friday, April 27. All should be well as this is a normal, scheduled scan, but our world has been rocked by Ryan this month, making this scan scarier than it should be.
In His hands,
Kim
PS~ Yes, I remeber meeting you, Amanda:)! Thanks for your faithfulness!
Tuesday, March 27, 2007 3:05 PM CDT PRAYER UPDATE:Just found out two devastating bits of info....Super Ryan Morgan, one of our "cancer buddies" from Scottish got word yesterday that his neuroblastoma is back! Just had "clear" scans 3 months ago! Pray for clarity for our docs to get him thru, and strength for Ryan and his family. Second bit of news....two friends sent me news about a new dx of neuroblastoma. Right now I don't even know the child's name, where he will be treated, etc. As I know more, I will post. I just know these children and parents NEED to be lifted and I know the folks who read about Chandler are praying folks.
I'm so proud of myself....I added these new pictures all by myself! Take a look!
Dear Prayer Partners,
Only a few words this time. I have a "no-training-wheels" bike rider at my house! Woo-Hoo! What does that say about balance??? I don't think I was riding my green- long banana seated bike (complete with a white basket with a plastic daisy attached) at a mere four years old and I'd certainly not ever had cancer in my skull!
I'd be happy about this accomplishment under the most mundane of circumstances, as all parents are. But it sure is sweet for Chandler to be just doing all the normal accomplishments that others can and he DID have cancer in his skull!
Thanks for checking in. Hope to maybe have some Easter pictures on here soon. I'm such a techno-weinie.
Thanks for continued prayers. They are so appreciated. April 27 is our next doctor appointment and CT scan. This is not the scan that "lights up", so we hope for an unchanged scan on this one.
In His hands,
Kim
PS Go get your Pediatric Cancer Car tag....please!
Saturday, March 10, 2007 10:51 AM CST Hi Prayer Partners,
Chandler is doing well, no actually, he is doing fabulously, spectacularly well. He is growing in stature and girth, actually needing new clothes. He already is at or above growth charts for his age, needing size 5 or 6's already. This is different than Betsy....she needs things smaller more often. His brainpower seems to be growing also, thanks to Miss Stacy at our church preschool. He is becoming more aware of the written word, learning the sounds that letters make. He understands that those strings of letters actually "spell" words. Of course we have always immersed both children in books, and always talked to and with them. I'm sure the fact that they are both natural geniuses (I'm only teasing) doesn't hurt. Seriously, he has really made that "turn" where I can actually see how much he is learning. I am surprised and amazed at his vocabulary. Some of the terms he uses (correctly, I might add) crack me up. He said, "I might blow a gasket" the other day and I almost laughed us right off the road. I found him "reading" the names of Thomas the Tank Engine characters off the computer this morning. Of course the picture was right there....(like I said, *genius*.)Seriously, with Chandler's frontal lobe of his brain receiving radiation, learning problems have been a major worry. Of course he hasn't taken any sort of formal, normed-referenced test yet, but this school-teacher-mom can tell you that he is certainly at least average and really I'm trying to be objective...he's probably above average. Now,that being said, his ability to follow directions is very sadly lacking. I'm not sure if this is from some of the cancer treatment, our treatment of him (most likely the problem, I hate to admit), or his just being his own little person. He can be terribly charming and sweet, but also a grade A, Number One STINKER! I'll gladly take stinker as long as he continues to be healthy. Along that line, our next appointment at CHOA for CT and check up is April 27. We've never gone this long before....gosh, it feels great!
I had the wonderful pleasure of talking to Jenny Wilkins the other day. I have been meaning to sit down and write about it since she called last week. I was sitting at my desk after school when my cell rang.....I could hardly hold the phone to answer when I saw her name on the screen. I have awful reception in the building so I had to call back...but I surely did. She felt like talking and I was so very glad to hear her sound so amazingly good. I had only called her twice since I had seen her at Catie's funeral services, one time I left a message and one time I didn't even leave my name, so this as the first time we got to just plain old talk. She is such a special person. God surely knew what he was doing when He gave Catie to Tre' and her. We talked and talked about Catie, her last days, the coming of Izzy, the autopsy and how it was so reassuring that they and the doctors had not made any mistakes that led to Catie's passing, but rather, the cancer was growing and would have taken her, according to Jenny, much slower and more painfully. As weird as it may sound, the RSV was a blessing in that it took her more quickly and I surely hope painlessly and peacefully. If you've not done so already, go to Catie's Caringbridge site and watch the beautiful slide show. You might have to wait a while for it to download, but it is well worth the minutes. It will be a blessing to you, I promise.
Jenny was also so excited to tell me that she and Izzy were going to Scottish to see Dr. Claire at the clinic....not because of a problem, rather to show off Izzy to all those special people who were so wonderful to Catie(and Jenny) through treatment. So cool!
This is getting longer than I'd anticipated, so let me go wash clothes or something productive. I do want to do a quick commercial for the Pediatric Cancer car tag that could come out this year. The short explanation is a family in Middle GA is trying to get this done this year. Their daughter, Joanna McAfee, was diagnosed with rhabdomyosarcoma at age 3 1/2 and lost her battle at age 6. You must reserve this special tag even if it isn't time to renew your tag, because 1000 must be "reserved" before any will be pressed. (Don't you wonder if convicts still make car tags?) You can reserve yours by going to this link,
www.supportcancerkids.org/Joanna_Tag_Application_FAQs.pdf
There you can learn more and actually place your order. It is a lovely tag, a silhouette of Joanna taken by her daddy.I will proudly attach it to my minivan. Hope you will too! The sooner 1000 are "reserved" the sooner I can attach. Please consider ordering yours soon!
Thanks for keeping a check on us!We are so blessed to be a bit over 3 years since transplant #2 and doing this well.
In His hands,
Kim
Sunday, January 28, 2007 6:25 PM CST Hello Prayer Warriors,
Tonight the words just won't come.
Chandler is relatively well (he has the sniffles and some clear nose-running-action going on). He needs a haircut. Tomorrow is just a regular, run-of-the-mill kind of day. I thank God for the usual, the mundane. When we were in the hospital so much I so longed for "normal." When I think of all these children whose treatment takes YEARS, it boggles my mind. I also had so much help...Meme and Papa helped financially and physically, as they were with Chandler and me in Atlanta. Jim Mac managed the house and kept Betsy going. Yet, I selfishly wanted to be home. I specifically remember one time getting released at about 4:00pm, driving home arriving about 8:00 or so. Only to receive a phone call about 8:00 am the next morning informing me that his culture had grown a bug so we had to come right back. I remember the nurse practioner apologizing profusely on the phone. I didn't care....I'd gotten 7 straight hours in my own bed! WooooHooo! By that time I had the whole packing thing down so fast that it really was no trouble at all and off we went!
I really didn't intend to tell that story tonight. It is just where I am mentally with all this cancer-stuff. I have considered closing this website. I wonder when it will be time? I know now it keeps me close to friends who still have fights and fears ahead. Frankly, I have fears myself. But thinking about The Wilkins Family tonight and realizing that they don't have follow-up appointments to keep and update about, just makes me have some different thoughts.
I'm sure God will lead me....He always does, if I'll just listen (I'm pretty hard-headed sometimes.) I think one of the reasons I am hesitant is because I always HATE to see anyone close a caringbridge page. I still miss Camp Jack's updates. I miss Jacob's (M & D)updates. I hope Jenny will continue to update about her feelings about Catie and her new feelings about Izzy. I'm glad when Victoria and Carter's mothers update. I love Kristie's new blog....I just hate that I can't read it at school since it is blocked there. So for now, however boring they are, I'll still update.
If you get a chance and haven't done so already, go read /ga/marygrace or /ga/brandonconnor or Kendrie's mom's blog www.notquitewhatihadplanned.blogspot.com with regards to Catie's celebration of life. Maybe I will be able to put some words together about it one of these days. Right now, the words just won't come.
I've got to go back to my wonderful, usual, boring, mundane, precious life with my family. That is what I hope for all of you...
Thanks for continuing to support us by reading, checking in, etc. Next scans look like they will not be until end of April! Yeah! (Thanks ,Kati.)
In His hands,
Kim
Friday, January 19, 2007 8:42 PM CST Natalie Grant has recorded a song that I encourage you to try to listen to ....it is called "Held" it is from her CD "Awaken". If I were more computer saavy I would have it playing for you, but alas, you must settle for reading the words. I dedicate it to all you wonderful Cancer Mommies and Cancer Daddies....especially the Wilkins.
Four years is too little (I changed to fit)
They let her go
They had no sudden healing
To think that Providence
Would take a child away from her mother
while she prays is appalling
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We're asking why this happens to us
Who have died to live, it's unfair
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it means to be loved and to know
That the promise was when everything fell
We'd be held
This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To the lilies of the valley and tomorrow
This is what it means to be held
How it feels when the sacred is torn from your life and you survive
This is what it means to be loved and to know
That the promise was when everything fell
We'd be held
If hope is born of suffering
If this is only the beginning
Can we not wait one hour
Watching for our Savior
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held
Jenny and I had a special love for another song by a blind singer/songwriter whose name is Ginny Owens. The song is "If You Want Me To". (You can put these titles and singers in a search engine and get free previews....I'm listening to them as I type.)
Anyway, in the Ginny song, it says,"If all of these trials bring me closer to You, I will go through the fire if You want me to." "It may not be the way I would have chosen, when you lead me through a world that's not my own. But You never said it would be easy...You only said I'll never go alone."
No, Jenny and Tre', you are NOT alone in your valley!You are being held.
We out here ache with you and for you.
In His hands,
Kim
Friday, January 19, 2007 0:35 AM CST Dear Prayer Partners,
Heaven just got my future daughter-in-law and I am jealous and selfishly angry about it. I hope that doesn't sound bad of me to admit....but I am angry! I am angry that Jenny and Tre' lost their adorable 4 year old to cancer treatment. Catie Wilkins is supposed to get better and get over this mountain. Instead, she is being greeted by our Savior in heaven. My personal consolation is that she is finally free of medulloblastoma, free of that stupid, stupid fungus in her lungs, she has perfect balance now and can run like the wind,she is free of IV pumps, g-tubes, vas-caths, and nausea.
Y'all, I just can't express the loss I feel. I can't believe she is gone! I can't imagine how Jenny and Tre' are going to sleep tonight in a hotel room in Atlanta and Catie isn't with them. How did they leave that hospital without her tonight? How? God's grace is the only reasonable answer that I can possibly fathom. He seems to be carrying Jenny because she is beyond description. If you have already been reading Catie's site, you already know this, but Jenny asked Catie to "let them know" about what to do and Jenny feels that Catie indeed did, so Jenny is peaceful that they did the right thing.
I am rambling. I have a million thought going through my head...maybe I need to go rest them.
Please pray for Jenny and Tre' as they plan her services, carry them out, and deliver a new baby all in the next 9 days. Yes, days.
I know this update is all about how *I* feel about this, but I will say I'm soooo glad I was able to be here, here at the hospital. It somehow was very fitting that not only was Catie's family surrounding her, but also 5 cancer mommies were there to try to give Jenny as much support as possible. I know if I am ever in her place, I'd want all those mommies right there in the waiting room for me. I hope it helped her.
TO CATIE IN HEAVEN: Catie, darlin', you would have been a beautiful bride for my handsome Chandler. And when he does actually walk down the aisle...I will think of you. Then and always.
In His hands,
Kim
Monday, January 15, 2007 9:32 PM CST Hi Prayer Partners,
This entry will be brief...not because nothing is happening in the "Normal/Sweet Life of Chandler Booth" but due to the fact that I am so tired but feel guilty for not updating more often.
First of all let me say that Chandler is doing so well. We just returned from an absolutely fabulous weekend with 3 other families at St. George Island. These families started out just being a "Supper Club" before any of us had children. Now the oldest children are in 8th grade!! The weather was perfect. I mean perfect. If I heard the word "blessed" said once I must have heard it 50 times. And not just with respect to weather, oh it is so much more! The kids were able to swim, collect shells, play on the beach, fish, play Phase 10, and if the adults weren't in the hot tub, they could get in there also! (They didn't have much of a chance with 8 adults)
Did I mention the eating? Oh my! Isn't gluttony a sin? Well, we are all guilty...but doesn't food just taste better at the beach, especially after a soak in the hot tub? I said before this whole group got started because of a supper club! I love getting to taste everyone else's special foods. It also encourages me to come up with a new recipe to bring.
To top off the whole trip, I was greeted with black balloons and black candles on my special homemade waffles this morning, since today marks one of those birthdays that ends in a zero....and I ain't 30 anymore! It is great to have such generous friends to celebrate the big 4-0!
Enough about me! Hopefully I will be able to put some new pictures of Betsy and Chandler sand-castle-building tomorrow. Too tired to try to figure it out tonight.
Thanks for checking in and still writing in Chandler's guestbook.
In His hands,
Kim
Thursday, December 28, 2006 7:17 PM CST Hello Prayer Warriors,
I have often asked for prayers for others on this site... but there is anyone who still comes to this site and hasn't already read about Catie Wilkins, please go to her site www.caringbridge.org/ga/catie to read about what is going on since Jenny can say it better than I and then pray for them. Please write on their guestbook, if you have a chance.
Jenny and Tre have been on this walk for over 3 years!!! And they have actively been fighting for this whole time.....no breaks! Catie has been through sooo much. Their weariness has to be almost unimaginable and to find out this morning that a "spot" that they have been watching has indeed increased in size now is such a blow. Not to tell you what to pray for....well, a miracle, a healing, is certainly obvious, but I also ask that you pray for clarity for the doctors, and for Jenny and Tre' that they do the right thing and have peace about it.
While I'm asking for prayers, I also ask for prayers for another "cancer mommy" here in Moultrie. Her daughter got her wings 2 days before her 11th birthday, which was on Dec. 19. I actually had the pleasure of teaching Stephanie this year. Yes, this year! When I go back to school her little name will still be in my gradebook, but she will be in heaven and her mother will be grieving for her and missing her here on earth as will so many others. It is so surreal. She was actually dx during Chandler's second transplant, Jan. 2004. She will be missed by so many.
Thanks for checking in. By the way, Chandler is doing so well. Enjoying all his toys that Santa left him.
In His hands,
Kim
Thursday, December 14, 2006 9:34 PM CST Finally!!!! I am sitting down to write about Tuesday and Wednesday's scans. In a word, "unchanged" sums them both up.
Tuesday's CT was as good as arriving at the hospital at 8:00 AM and drinking nasty contrast for two hours can be. Of course all our nurses were absolutely extraordinary, getting his IV going with the first "stick" then following up with lots of positive , encouraging words for him to do the scan without being sedated. We were prepared, just in case, to be sedated if necessary. I was sssooooo proud of my brave little guy, doing the whole scan....chest, head, abdomen, and pelvis with NO sedation. He was scared. He did quite a bit of "self-talk" saying under his breath, things like, "it will be over soon" or " only a little more". He was simply amazing.
After the scan, we visited with Stephanie and Dr. Rapkin over at the clinic. We were greeted over there as always with the sweetest smiles, hugs, etc. I was particularly surprised to see some "Lighthouse" buddies and "Camp Sunshine" friends. Many other moms say this much better than I, but I just can't explain how wonderful it is to come to a doctors' office and feel so at home. Even if the staff is tired (which of course they are) they are so sincere about being happy for you when things are going well and also being genuinely stricken with grief when someone gets not so good news. They are all truly exceptional individuals...whether they answer the phone, plan schedules, take blood,weigh and measure kids, do procedures, or diagnose patients and prescibe drugs.
Wednesday's scan was also "unchanged" but it did not go nearly as smoothly as Tuesday. They "lost" us in one of the three waiting rooms. We arrived 1 and 1/2 hours early for a 1:00 scan, but somehow they truly "lost track" of us and when I finally went back to the sedation bays to ask for some Emla cream (numbing medicine)they seemed sorta surprised/addled. I really didn't think much of it at the time, even though I noticed the strange reaction. I just thought some emergency had come in and had taken up our scheduled time. It was about 3 hours later when I finally figured out that they simply checked the wrong waiting room, thought we were not at the hospital yet, and took another patient ahead of us. I know it was only human error and I KNOW it was in no way on purpose, but it was pure HELL trying to appease Chandler from 11:30 until 2:45. Its not just the wait, it was the fact that he'd not eaten since the night before and was so hungry and thirsty and he wasn't allowed to have either as he requires sedation for the MIBG scan since it is so long. Of course it was not any one person's fault, but if Outback can have beepers to call you to your table, why can't Scottish Rite with all of its technology manage a similar set up? They are presently working on a $245 million expansion...hence the numerous waiting areas....but it just seems ridiculous that we could sit and wait and wait and wait and no one actually check all the waiting rooms.(By the way, we were in the waiting room the staff told us in which to wait...it wasn't like we just picked that one through eeeny-meeeemney- miney-mo.) Can you tell I am a little bit upset?
I am so grateful for unchanged scans that really in the scheme of things, it doesn't matter. What I can tell ya, is THAT scenerio will never be repeated with us, as I will always walk back and personally tell them that "Chandler is in the building." I will not rely on some yahoo at the front desk to call them and let them know as he told me he would do.
Now that those scans are now done I can fully concentrate on getting on with Christmas. I just couldn't really get all geared up knowing these scans were looming. So maybe my presents will now get bought and wrapped and we will put something on our tree besides lights and some paper snowflakes that Betsy cut out on Saturday night.
Hoping your holidays are blessed as much as ours have already been.
In His hands,
Kim
Friday, November 3, 2006 9:13 AM CST Hi Prayer Warriors,
Thanks for still checking in with us...in spite of my in frequent updates. As I always say, no news is good news.
Chandler Booth is going strong! Halloween was such a wonderful treat for Jim Mac and me, watching the most adorable "Red Ranger~ Mystic Force" run from one door to the next. Betsy was beautiful as a medieval princess. I think she was glad to have a 4 year old brother to take trick-or-treating. She is almost 11 and maybe it is starting to be sorta "uncool" to trick-or-treat. Each time Chandler would go to a door, he *might* not remember to say, "thank you", but as he would be leaving, he'd say "Happy Halloween" very loudly. It cracked us up! Of course I'm telling him....say "Thank you" and he'd do that also! When he'd get back to us he'd say, "Mama, I like this Trick-or-Treating....it's fun!"
Tomorrow is the last soccer game of the season for #7 Chandler! In this league its all about the drink and snack....not the score. Jim Mac says their games look something like "herding cats." No one (especially Chandler) cares about whether the ball is in play or not...who's goal is at which end of the field, etc. But he has had a great time, and of course we have too. I can cry really easily when I think how very grateful I am that he can play and "hang in" with the other children. After all of his treatment, that simple fact is humbling. Thank you for all those prayers that were said and for all of those yet to be said for his continued recovery.
Speaking of recovery, Chandler will have his next CT and MIBG scans December 12 & 13. I am asking for the specific prayer that this MIBG will finally show a healing of the tumor in his head. Even though, Chandler continues to do sooooo well, he still lights up like an airport runway at the tumor site on his skull. If it would show some darkening, it sure would make us all feel a whole lot better about ultimate healing. Dr. Rapkin and Dr. Hudgins still warn that they might want to go back in to his skull for more biopsy/tumor removal. Frankly, I hope to avoid that all together and I think if this MIBG shows improvement, maybe,maybe they won't feel compelled for another "look-see".
We will soon be reaching the 3 year post transplant milestone. Three years!! Each day with no chemo, no pain, no symptoms is such a blessing!! Dec. 5, 2003 we entered into the first of two stem-cell transplants. The second one was over Feb. 27, 2004!! I still can't believe it has been that long ago! Praise the Lord!
Chandler continues to love Miss Staci at school. She is doing so much with the class. He is learning so much! We are very glad he is with her this year and anxiously await him starting at Sunset (my school) next fall.
I encourage you to read and pray about Catie..../ga/catie who is in the hospital and also Jake...../ga/jakemiller. (Jake is another nb child that my cousin told me about.)
Hoping your holidays are relaxing, full of food, family and above all, health!
In His hands,
Kim
Wednesday, September 27, 2006 3:42 PM CDT Hi Prayer Partners,
I don't have much time, but I wanted to ask for prayer for our Medulloblastoma Buddy, Catie Wilkins. (Also known as my future daughter-in-law) Catie is having a BIG brain surgery on Friday, September 29. Her parents are SO sweet and precious to all of us that I just wanted to acknowledge their struggle here. I feel most of you already know and read about Catie, in case you haven't....www.caringbridge.org/ga/catie
Also, to update about our cafeteria mgr., Sylvia, we heard today that her brain tumor was stage 2 (1 being the most favorable and 4 being the least favorable) so for that, we are grateful. Hopefully, her treatment will be short and well-tolerated. Her spirit and her love of the Lord seem stronger than ever. She isn't telling God how big her burden is....she is telling that cancer how big her God is.
The little boy from Moultrie who I told you about last week had surgery Tuesday. He has a web site as well. Go to www.carepages.com and his name to put in is YoungHawg (You can tell he is a true Moultrie/Colquitt County Packer at heart using this as his name!)
Here I have done it again....no news about Chandler. But that is such a GOOD thing!!! Of course we always covet your prayers for continued healing and for his cancer to never, ever rear its ugly head again. We also appreciate everyone checking in with us.
In His hands,
Kim
Monday, September 18, 2006 7:32 PM CDT OK OK OK...I promised to write about the Quiet Heroes Luncheon. It was wonderful. I got to see so many other cancer moms...some I only knew by way of Caringbridge (up to the luncheon), others were friends since our cancer odyssey started but the thing they all had in common was that they all they all looked mah-velous. I even got to see an "old" friend that went to my highschool in Albany. Her daughter Margaret had been treated for cancer at Egleston the year before Chandler was diagnosed (probably about the time he was just born, actually). She looked great too I was just sorry that we didn't get to talk more.
Chris Glavine, Kristin Connor, and the rest of their committee absolutely "out-did" themselves. We are profoundly grateful for all of their hard work and for the money that they raised for pediatric cancer.I am sorry for not taking any pictures this year. I was just so busy running my mouth, hugging friends, and trying to "fill in" Julianne Chambliss on all the stories of children with cancer that I just didn't make time to take any. Plus, I'm so stupid when it comes to putting them on this website that I just encouraged everyone to go to /ga/kendrie to see the ones Kristie took.
I also so enjoyed going out to eat and shopping at IKEA with Kristie(Kendrie's mom), Kristie's mother(Kendrie's grandmother), my mother(Chandler's Meme)Joyce Z(Jill's mom who came ALL the way from MO!!!!), Jenny "tell and sell" Wilkins(Catie's mom), D.D.(Mary Grace's mom), JoBeth(Wheeler and Kilby's mom and Prayer Warrior), Julie (Joshua's mom), and Lynne (Gracie and Hudson's mom). All of these moms are so near and dear to my heart. They all have a unique cancer experience....some have happy-endings, some have incredibly gut-wrenching sad endings, while others are still in the thick of their fight. I am so lucky to know each of them. Lots of moms have referred to mothers of cancer children as some sort of awful soroity...the kind that has the worst hazing in the world but somehow not only have I found the children to be extra-special but also the moms are as well.
I have a couple of prayer requests tonight:
Besides the normal ones for our cancer friends, I also ask for prayers for the lunchroom mgr. at my school who had a brain tumor removed on Thursday. Sylvia is such a sweet supporter of Chandler through his fight and now she is fighting the cancer beast herself. Our prayers are with you, friend.
Also, one of my students, Ernest,a fifth grader, returned to school today. He had been to Egleston getting his Gastric-tube resituated in his abdomen.(He uses it to eat Ensure for nourishment). He bravely (and so naively) told me that they are going to "burn up" his returning tumors. Ernest got sick a couple of months after Chandler (when he was in Betsy's second grade class). He has had his G-tube ever since. He had surgery to remove a number of tumors from his brain and spine when he was in second grade. Now they have regrown. Of course I do not understand Ernest's situation fully as I have never talked to his mother. What I do know is radiation to a fifth grader's brain and spine is VERY serious, with life-long consequences. He so needs our prayers.
I also found out on Friday afternoon about a third grader at another elementary school here in Moultrie who is headed to CHOA on Sept. 26 for surgery. This child had had cancer of some kind in his kidney some time back and now it has come back in his lung.....not good at all. His family needs our prayers as God surely is still in the miracle making business.
Speaking of asking for a miracle....please join me in asking for one for Dustin Cobb...www.caringbridge.org/ga/dustincobb
This is a boy we met at Lighthouse Family Retreat who is fighting relapse neuroblastoma.Relapsed neuroblastoma....it hurts to even type those words!
I can't go without mentioning Blaine Escoe. Their family has been dealt the "cancer card" TWICE...overlapping cancers!!! I can't imagine!!They need a mention to "the big guy" and I don't mean Mark Taylor.
Well, maybe the next Journal entry will mention Chandler..you know the one this site is supposed to be about?? He is doing terrific! Thank you, Lord!
In His hands,
Kim
Monday, September 11, 2006 5:33 AM CDT Dear friends,
I have so much to tell about the wonderful Quiet Heroes Luncheon that I don't have time right now. I just wanted to encourage anyone who wants to see some pictures to go to Kendrie's site www.caringbridge.org/ga/kendrie
The luncheon was beautiful, special, and hopefully raised a lot of money to find the cure! I promise to tell more after school today!
Sending "all-clear" prayers for Blaine, who leaves this morning for the west coast for his first scan following radiation.
Thanks JoBeth for the great ride!!
In His hands,
Kim
Monday, August 28, 2006 7:34 PM CDT At the end of the school year, I was asked to write a "fund raising" letter for a wonderful organization in Atlanta called CURE. It went out to many homes and businesses but in case you missed it, here it is....
Dear Friends,
"Life isn't a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out and proclaiming LOUDLY---'Wow, what a ride!'"
This is a quote I have had taped to my computer for a long time. It sums up how I hope I live my life and it certainly describes my son, Chandler. Since we brought Chandler home from the hospital, he has been, "all boy" and he definately enjoys living life! However, his life was almost cut short at the tender age of 14 months, when doctors found a dangerous tumor in his tummy.
Have you ever heard of neuroblastoma? Until July 2003, I surely hadn't. But when I heard this unfamiliar word for the first time sitting in a hospital room four hours away from home, I knew it wasn't a good thing. My husband and I were told that neuroblastoma--the kind of cancer our son had-- is a solid tumor cancer found exclusively in children and that the mortality rate for this cancer was particularly high. We were moved to the oncology wing of the hospital where bald-headed children roamed the hallways dragging IV poles...not exactly Disneyland! Chandler was biopsied and we were again given the news that not only did he truly have this awful cancer but it had spread to his bones, bone marrow, and blood--basically everywhere in his tiny body. His cancer was classified as stage 4 , making our son a high-risk patient. At the outset, the plan for his treatment would span approximately one year and be VERY intense. We couldn't believe it-our baby was only fourteen months old! The fact that we were devastated was putting it mildly.
How do parents cope with news like this, especially so far from neighbors, friends and family? Thankfully, CURE Childhood cancer stepped right in to support us. Initially, CURE volunteers came to see us and we received a NEW Patient Kit ,(now called a CURE Comfort Kit), which was full of useful items bearing the CURE logo. Who wants to wear a sweatshirt with CURE on it or carry around a small cuddly CURE bear? We did! It was the first outward statement we made toward beating this insidious disease. In those harrowing days right after diagnosis, we sure did need to focus on that very powerful word...CURE.
In a nutshell, finding and supporting the scientific advancement in finding a cure for pediatric cancer is what CURE Childhood Cancer is all about. CURE is a very significant supporter of pediatric cancer research at the Aflac Cancer Center at Children's Healthcare of Atlanta ("CHOA") and Emory University School of Medicine. And by no means did CURE just get started. This organization has a proven track record of more than 30 years of helping pediatric cancer patients and supporting families. With CHOA becoming a research powerhouse, CURE is helping to get more doctors and research specialists to come south, giving our children (and children nationwide as discoveries are shared) the very best chances of survival with newer and better therapies. In fact, one of our own doctors was at CHOA because money from CURE funded his fellowship.
For us, CURE Childhood Cancer was there at the beginning and through the darkest of our scariest days. CURE continues to be important to us even now, three years after Chandler's diagnosis. CURE's Annual Family Picnic where we get to see other cancer surviving families celebrating life outside the hospital is a highlight of the summer. CURE also supports the beautiful Quiet Heroes Luncheon for all the "cancer moms" who have fought the cancer beast at the bedsides of their children, whether their children beat the disease on earth or beat it by going to heaven.
During the "survivng, skidding in broadside"stage of our journey, CURE is there for us, just as it supports other families like us as they receive the devastating diagnosis of childhood cancer. Please consider giving to this very worthy organization. Until there is a cure, we need CURE!
Thank you,
Kim Booth
Well, hope you enjoyed our story.....so far we have a very happy ending. Keep praying us through.
In His hands,
Kim
Friday, August 18, 2006 4:14 PM CDT It has just been too darn long since my last update!!! Where DOES time go?
Let's see...hope I can remember all the stuff that's been going on in the normal life of Chandler Booth.
Chandler started PreK at our church last week. He loves it! His teacher is Mrs. Stacy, who is JoBeth Hunnicutt's sister (many of you know her as a faithful prayer warrior for lots of "Caringbridge Kids"). She seems so excited about teaching them and her excitement is infectious!!! I'm sure she will need a firm hand with this class, though. Not only is Chandler in there, but also McKenzie Fleming who is a rhabdomyosarcoma survivor!!! Those two along with McKenzie's twin ,Kylie, are probably enough to test her patience, the other ten 4-year-olds, notwithstanding!!! Makes me tired just thinking about it!! No wonder it is only a 3 hour program, 4 days a week!!!
We are going to let Chandler repeat PreK at my school next year... not because of the cancer or any learning problems...just because his birthday is May 31 and he needs the extra year to mature. (I feel heads nodding in unison agreeing that MANY little boys NEED that time.)The prospect of him coming to school with me is so exciting! It will help me cope next year since Betsy will be leaving my school next year to head to the middle school.
I am very excited to learn that next year motorists in Georgia will have the opportunity to purchase a car tag to show support of pediatric cancer. I learned about this from a friend of a friend of a friend... that a little girl's family in Bonaire, GA(Kristie, do you know them?) got behind this project and in 2007 it will be a reality. The child's name is JoAnna McAfee and she lost her battle against rhabdomyosarcoma in December 2005. If you would like to see and read about the car tag, go to www.supportcancerkids.org
I am also thrilled about the upcoming Quiet Heroes Luncheon in September. Last year's luncheon was sooooo special. Kristin Connor, Chris Glavine, and many others are working themselves to death preparing for this event to make it memorable, entertaining, and to make a pile of cash for CURE in Atlanta and for Curesearch on the national level. These women are tireless in their efforts to convince others that pediatric cancer CAN be beaten IF enough money can be raised!!! It is so sad that pediatric cancer gets so little funding, since we don't have as many victims as the adult cancers!!! Let me stop and get off my "soap-box" before I start offending someone! All cancer is bad...VERY,VERY bad, but somehow dying at 14 months of neuroblastoma seems worse than dying as an 85-year-old grandpa of prostate cancer.Just MY personal bias!!!!
Probably everyone who reads my updates also reads about Catie Wilkins...caringbridge.org/ga/catie....but in case you haven't lately, say a prayer for them. Catie has something that we all hope is a cyst on the back of her neck. They are getting it checked and removed soon, maybe Monday (Aug.21). Thanks.
I guess I will go for now. I need to make up a Social Studies test for my students to take on Monday. Hope your weekend is full of fun. Thanks for continuing to check in with us.
In His hands,
Kim
Sunday, July 23, 2006 6:47 PM CDT Hello Prayer Partners,
Your prayers are soooooo wonderful! Thank you to you and to God above for Chandler's continued good news.
Hope I can recall ALL the nuances of such a great appointment.
First, Chandler drank the contrast with his normal ease. (Many kids have to get a tube shoved up their noses and down to their tummies to get the contrast in.)
#2 The friendly nurses all made us feel so "at home" as they always do.
#3The scan was almost on time.
#4 Dr. Freilich was the sedation doc and was VERY encouraging about Chandler doing this one without his expertise.
#5 The childlife specialist (sorry, I'm terrible remembering names) was AWESOME...she let us go in the CT room, look around, she did a demonstration with a stuffed Minnie Mouse as the patient and let Chandler push the buttons to put Minnie in the scanner.
#6 Chandler just had a willing spirit (no doubt this came directly from prayer) to try to do the scan without sedation.
#7 The nurse got his IV in on her first try and Chandler NEVER made a noise!!!! Not a peep! Absolutely awesome!!!
#8 Chandler did the scan! and the BEST part was of course, finding out that
#9 the scan was good!!!!
We saw another nb survivor, Kylie, with her mom and baby brother while at the hospital. We just passed in the hallway, but I immediately recognized her from her photos on her Caringbridge site! (We'd never met before.) They were there for an appointment for the baby brother (NOT a cancer appointment!!!!) Hope they got good news about him.
Dr. Rapkin was his usual, funny self. We love getting to see him. He always acts like he is sooo glad to see our boy. We told Dr. Rapkin three years ago that Chandler was going to "make him look good"(by surviving). I think he certainly has done just that!
Once the scan , lunch at Copeland's Deli, and the appointment with Rapkin were done, we braved the traffic to go to the Aquarium downtown. We went in at 3:00 and left at closing time, 6:00. Jim Mac had never been and it had been since last Nov since we'd been so, it was really fun! One of my favorite parts was eating Tiramasu in the cafeteria downstairs. I am such a food hog!!! Forget the awesome whale sharks, or the beautiful Belugas...just let me graze in the cafeteria!!! Anyway, it was really nice and we all had fun!
I have a lot more to tell about having lunch with Mama Duck, my trip to a bra store, the CURE picnic, and having dinner after the picnic with friends but since Betsy needs the computer, I'll relinquish it to her and have something else to write about later!! I just wanted to make absolutely sure that I updated when we got home.
Thanks for those wonderful prayers! What an awesome appointment!!
In His hands,
Kim
Tuesday, July 18, 2006 10:01 PM CDT Hi Prayer Partners,
I have come to update this journal 99 times and just can't seem to get my thoughts together...mainly because I have a beautiful little 4 year old boy hanging all over me, asking me to do something for him, basically wanting my full attention. When I sat down earlier today, he said, "Mama, don't "play" on the computer now." That cracked me up. I don't even know how to "play" on the computer...that's his sister and his daddy, NOT me! I guess you could call reading some of these Caringbridge sites a pleasant thing to do sometimes(especially /ga/kendrie)...but it is no game!
Thursday morning (20th) Chandler has a "routine" CT scan and doctor appointment right after. Please lift Chandler's name in prayer for, of course, a good scan but also that he is able to do this one without being sedated. They have a new, FAST scanner that many other kids Chandler's age are able to stay still long enough to get a few good pictures. Last time (3 months ago) we tried but he was a bit "freaked out". It seems strange to me that he is afraid...Lord, he's had a CT every 3 months for three years now (yeah, it has been 3 years!) but he has always been put to sleep in my arms (me telling him a story about Thomas on the island of Sodor) and then awakening also in my arms. He really never sees the room or the machine. He still will have to get stuck because he has to have IV contrast as well as oral contrast, but still, it would be so nice to not have to put him to sleep.
As I said before, it has now been three years since Chandler was diagnosed. Gosh, three years!!! It has been 2 years and 3 months since the end of radiation ,which is when Dr. Rapkin counts end of treatment. (Technically, Chandler took accutane for 6 months after that in 2004 and again also for 6 months in 2005.) Sometimes it seems like yesterday and other times it seems like a very long time ago. It is surreal. Not to get all sappy...but when I think of all the blessings (this website being among them) that have been showered on us over these three years, I am just humbled! The wonderful people we've met, the prayers said for our family, the fabulous hospital, nurses and doctors, our church family, our personal family, well, the list just goes on and on. Thank you for being a part!
Don't ya just love the new picture on this opening page? We took Chandler to get some 4 year old pictures taken the other week. He was surprisingly cooperative! I was pleased with the end result. Hopefully, one of them will eventually be enlarged and hung next to Betsy's four year old portrait. I love pictures...and I really love pictures of my children. Betsy's 4 yr old portrait is truly beautiful and I have longed for Chandler to turn 4 so I could get his done like hers. Now, it has happened...I could just pinch myself I am so delighted. Yes, I KNOW I am so blessed!
We've got the CURE Family picnic on Saturday, that we are looking forward to attending. Hopefully, we will get to see some of our friends...Kendrie, Brandon, Jack, Mary Grace, Gwen, Josh, and many more. We are also going to try and get in a visit to the Aquarium while there, Jim Mac has not been yet, so maybe we can go again. Chandler hopes so too...he LOVED it!
Hoping the rest of your summer (what's left of it) is full of fun! Stay cool in this heatwave, if you can!
In His hands,
Kim
Friday, June 23, 2006 1:35 PM CDT Heavens!!! Can ya believe I finally am updating this caringbridge page? It certainly is well overdue, but if you read other caringbridge pages, you know that lack of updating means a whole lotta living is going on!!!
That is just what the Booth family is doing....LIVING! So much has taken place since my last update, I'm just going to "dive right in."
May was busy, to say the least. My friend Kristin said she thinks May comes in a close second to December with regards to demands on your time. I fully agree. Chandler "graduated" from 3 year old preschool along with McKenzie Fleming (a rhabdomyosarcoma survivor). Betsy competed in her last gym meet of this season, I went on an extended field trip to Jekyll Island with my 5th grade students, Jim Mac participated in a sleep study (results were border-line that he has sleep apnea), we went to Mobile, AL as a family to Jim Mac's cousin's wedding, Mother's Day, field day at school for Betsy, Honors Day for Betsy at school(we are so proud of her!), End of school for me, post-planning, teacher workshops....well it is just endless!!!!!
June started off with a "bang" too because Chandler's Fantastic Four Birthday was on Friday, June2. In case you are unfamiliar with "Fantastic Four", they are a quad of Marvel comics Superheroes: Mr. Fantastic(AKA Reed Richards) can stretch, Johnny is the human torch and can as his name implies, burn stuff. His catch phrase is, "Flame on." Then there is a girl, Sue, who can make herself invisible and the last member of this odd group is a fella who is orange and appears to be made totally of rock. His name is "The Thing"(AKA Ben Grimm) and he is blessed with super strong muscles and his catch phrase is "It's clobbering time!" I'm explaining all this to tell you about his party. As a party favor, each child got a full-sized costume of "The Thing" (got 'em cheap at Walmart). The costume is padded so the wearer appears to have big biceps and a killer six-pack. It was hilarious to see all those four year old "body-builders" running around at the pizza joint where we had the party yelling "It's clobbering time!". I wish I had pictures to share with you...maybe one day! Anyway, Chandler had an awesome day and I am one blessed Mama!
On Sunday a girlfriend and I took our daughters to Athens, GA(God's Country Hee Hee) to leave them until Thursday for "Gym Dawg" Camp. Betsy and Janna were rooming together at Cresswell Hall. For those of you who were not lucky enough to attend school at UGA, let me paint a picture for ya. Cresswell is a highrise dorm (9 stories) on the north side of campus. It was built before I was born (as all the housing at UGA was ) and I don't think it has had a face lift(or seen a can of paint or a sponge) since they built it. The other mama and I both remarked that it smelled exactly as it did the last time we were in there...a combination of "old clothes" with a twinge of "musty" thrown in. I'm sure that place has seen many a drunken party in the last 40 years. I shuddered to think of all the underclassmen who had lived in this room before where I was about to leave my first born child!! It was TOUGH!! I'm somewhat of a nerd about cleanliness and I wished I'd brought Lysol and a mattress pad along with Betsy's gym suits. Somehow I managed to leave her though and she was fine. As a matter of fact, she and her roomie, Janna, both won awards! Betsy got most improved and Janna got best strengthening and conditioning!! This really meant something, too 'cause they only gave out around 25 awards and there were 214 participants!!! We were very proud mamas!
On Monday my daddy and a buddy of his played in the "Cure Classic" in Savannah at the Westin at the Harbor. This is the tourney that our friends, The Wilkins (ga/catie) started last year to benefit pediatric cancer research. I went for the lunch that followed. Jenny and Tre' did a masterful job organizing the tournament. We also thank The Westin in Savannah for donating some prizes. Jenny had signs posted of so many of "our" kids---I know those men playing had fun with the golf, but I bet they got a little education too. Thank you, Jenny for all you are doing to help find a cure!
Well, as soon as Chandler gets up from his nap, I think we are going to go swimming. It is still so nice not not have that darn central line or super sun sensitivity due to Accutane this summer. We can just go like normal people.
Normal, I can never tell you enough how great it feels!
In His hands,
Kim
"Routine" scans and Dr. visit July 20. Please pray.
Wednesday, April 26, 2006 3:48 PM CDT Quick update from Tuesday, May2: Chandler's tumor markers (in his urine)came back once again, NORMAL!!!! Just like the scan results, we aren't really surprised......but oh how grateful! Thank you Lord for more good news!
Hi Prayer Partners,
In case you missed my last update, our check up/scan on Friday went smooth as silk and the scan revealed NO CHANGE which is the best news ever!! We are now away from Atlanta until July unless we just want to go !!! How great is that?
We have just been so very blessed this last year. I sometimes have to pinch myself. Then again, sure I do "have my moments" of doubt, wracked with worry, but those seem to come around a lot less frequently.
This latest photo was taken Sunday at our annual church picnic. Notice the bubble stuff all over his clothes. I had gone to great lengths to dress Betsy and Chandler in color coordinated outfits, knowing some picture-taking would be going on. Of course I made sure they were both clean and well-coiffed. Did a lot of good. As soon as we arrived , Betsy's pigtails started coming down due to numerous flips down the blow-up slide they had set up. Oh well, these will go in the scrapbook too, just not as I'd planned. But so what? Man, we had such a great time at Gregg and DeAnna's house, eating fried chicken (AKA Baptist Bird), and every other mouth-watering thing you could dream up with friends and family. The afternoon was picturesque and not too hot.
Hasn't Chandler grown? I'm buying size 5t things for him...it is like he just skipped over 3t and 4t! Next month that boy will be 4 years old! Four! I hope I blink and it is 14, then 24, then 34, etc. Not that I want it to "fly by". I'm just ready to think about him getting older. When he was so very sick, I could hardly think about tomorrow. I'm sure you understand.
Thanks for checking in with us. Prayers are still needed.
In His hands,
Kim
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Saturday, April 22, 2006 12:31 AM CDT Hi Fellow Prayer Partners,
Don't have a lot of time to report.. but wanted to say once again we had a great day at Scottish Rite. Chandler's CT went off with out a hitch. Those technicians are so kind and so skilled, they never cease to amaze me.
We drove to Atlanta Thursday night in order to be at the hospital before 7:30 Friday morning. The drive was easy until we hit a torrential rainstorm just south of town. I don't think I've ever driven through Atlanta going 35-40 mph, but I sure did Thursday night.
Anyway, we had our CT scan done on the much anticipated "new" machine. (It is super fast...Oprah highlighted one like it on her show. It can take a picture of a person's heart in the middle of a beat!) Jenny, the CT gal, suggested we TRY to do the scan withOUT sedation since the time is so much shorter, many children are able to stay still long enough. Unfortunately, Chandler was a little too freaked out by the size and look of the machine. I put my head in it, trying to coerce him. Alas, he would have none of it. He IS still only 3 years old, though. I bet it won't be too much longer before he will be able to do it. Then, at least, he will be able to eat or drink before a scan instead of starving like he does now.
We walked straight over to Dr. Rapkin's office and he got the results while we were there and they were....drum roll, please....*STABLE*!!! Yeah!! Remember, as long as Chandler's CT stays stable, there are no changes. No bone changes are GOOD. The MIBG scan is the one that actually looks at his tumor, this one just looks for change or spread.
The elephant that had been on my chest for several days just got up and walked onto someone else's. Next scan should be in 4 months. Yeah!!!
More later as I have new pictures to post!
In His hands,
Kim
Personal to JBH: Your time is coming, thanks for always offering!!! I sooo appreciate it!
Tuesday, April 11, 2006 4:34 PM CDT Hi Friends,
It has been so long since I've updated I frankly, don't know where to begin.
Last week while the Booth's enjoyed Spring Holidays, I got a call from my best friend. She was obviously out of sorts when she phoned and when she told me her reason for calling, I too, joined her in feeling strange. She had just received an email telling about a 15 month old girl in her church who had just been diagnosed with neuroblastoma. Man, my mind raced back two years and 9 months immediately. I started saying all sorts of "encouraging-stuff" to my friend, like "at least she is in a good hospital....I guess Dr. Katzenstein will be her doctor....what stage is she?....et cetera...et cetera...heck, I'm not sure what all I said. My mind was just in a tizzy, being unexpectedly thrown back into those "deer-in-the-headlight" days. I have told a couple of "key" people about the new family so someone who is in Atlanta can contact them, to offer support. I have tried to contact them also but as yet haven't reached anyone. The child is Rebecca (I won't reveal anything else until I get permission from the parents) and she is from my hometown of Albany. Please pray for this new diagnosis.
Also, to continue with my hometown reference to Albany, I met the sweetest family from Albany last week. We met at The Lighthouse Family Retreat in Santa Rosa Beach, FL. Their beautiful 8 year old daughter has a brain tumor. They are having a big conference tomorrow in Atlanta to discuss what to do about the tumor. Please also pray specifically that the docors and surgeons can come up with a plan to get rid of the tumor.
As I mentioned before, we spent 4 glorious days at Santa Rosa Beach last week. The weather was sooooo cooperative. Honestly, it was as beautiful as I've ever seen it. But even better than the weather was the fellowship we experienced with other families. There were 9 other cancer families and several other families who came to serve. The Lighthouse Retreat is such a blessed experience. We have been blessed now 3 times and each time I have taken away something different and wonderful. The volunteers are always such amazing people. I got a chance to talk to one volunteer from Maine (yes, all the way from Maine). She had heard about the Lighthouse on Dr. Dobson's show, Focus on the Family and upon urging from her 8 year old daughter, she applied to volunteer and she and her daughter came(leaving her husband and profoundly autistic son at home). Here is this lady spending her own money to fly her daughter and herself to Florida to *serve* families who have been hit by pediatric cancer. Like I said, amazing. Our "Family Partners", the Hearns were also amazing. Chandler asked last night if we could invite Miss Christine to come spend the night with him. He said he missed her and Mr. Andy. They were so sweet to all of us. I can't fully express here our profound gratitude to them for watching Chandler and Betsy so closely so Jim Mac and I could go out to dinner,and attend the support group meetings. They seemed tireless! Thank you to their adorable children Kevin and Caroline too for helping.
I don't mean for this to be such a long entry, but I can't close without saying how great it was to meet the other cancer families. The mix was so neat...only God could've worked it all out so well. We were housed with The Hennesy (Will) Family who we had met on a couple of occasions but getting to stay with them was such a pleasure. Will had Ewings Sarcoma when he was 6. He is now 8 and has a big scar on his leg as his reminder of his cancer. We also knew Maddie and Regina Ice. (We'd met them at Camp Sunshine). Maddie is a leukemia survivor who is vivacious and wonderful. We also had met the Hopkins Family before at Camp Sunshine. Their family is simply amazing!! They have 2 girls with MAJOR chromosomal issues as well as one of them with a rare cancer that required removing the affected leg. Yeah, unbelievable.
Then we met many other families all at different stages of treatment. Each family special and unique with unbelievably strong children. Hearing each of their stories is so cathartic (sp?). Some of them were like us, a few years out...one was in relapse...another had just started their journey...and one family might be facing their last days with their child....while yet another single mom was making it alone as her husband "just couldn't take it." It is gut-wrenching to hear the bad news and great to hear when things look good. It is so good to be able to talk to others who REALLY, REALLY understand to share our greatest fears. Even those of us who appear to be in a pretty good place, if we confess it, are still afraid for that proverbial shoe to drop. The truth is we are all one scan, one finger prick or one lumbar puncture away from getting bad news. Frankly, I don't think about it very much. Many days I don't think about it at all (Thank God) but with these parents, we can cry and share and it is OK.
On the last night of the retreat they always have a talent show. Chandler sang the "Lighthouse Song" and some other song he made up while holding the microphone.(He LOVES a microphone) Betsy wowed the audience with a Pat Benatar diddy called "Hit Me with your Best Shot" (Yes, she is the daughter of 80's parents.) She did a great job.:) She can really sing, unlike the rest of her family. I love it that she gets to be center stage at Lighthouse. They focus on the siblings as much as the children with cancer.
Hopefully, by the time you read this, I will have inserted some pictures for you to see what a great time we had. If there aren't any....check back later.
In His hands,
Kim
PS Routine CT scans coming up on April 21. Please pray for only good results!
Thursday, March 2, 2006 2:37 AM CST ***UPDATE***
I have now heard from Dr. Rapkin and the news is WONDERFUL!!!!! As long as Chandler continues to have the stable scans, stable urine markers, and good physical exams, in his words, "He's a free boy."
Please join me in heaving a tear-filled collective "Amen, thank you, Lord, thank you!"
Thanks also to Misti for scanning this latest picture in and posting it for me. Isn't it sweet? It doesn't show Chandler very well, but it does show the special love between the two of them.
Chandler continues to look and act like he was never sick last week! PTL!
Thanks for checking in!
Hi Prayer Partners,
Enough already!!! I know I haven't updated in a very timely manner following this most recent scan. For all of you who have checked in and asked others about us,how can I ever explain how truly wonderful it is to have such faithful friends as you? A mere "thank you" just doesn't begin to cover my gratitude.
There is very little drama regarding this scan...except for what is going on in my heart and head. First, before I try to explain...the scan was STABLE. Stable you read? so you may be asking yourself then, why did it take so long for her to write 6 little words? Stable is good , isn't it? Yes, "stable" beats the tar out of "We see something new, Mrs. Booth." But it was all in the scan interpretation meeting with the doctor that put me in , for lack of a better descriptor, "a funk."
It went something like this: "Well, this certainly looks stable....maybe even if I had to say...some improved, but definately not clear." says Dr. Rapkin. As I have said before, I really, really didn't expect for this one to be our first clear scan...I had hoped for at least a "dimming" of the intensity, which did not happen. So I am ready to start getting our books/toys back together in Chandler's bag to drive home, being satisfied with "stable". But unfortunately, he doesn't stop talking. Dr. Rapkin goes on to mention other words and phrases, such as "more available treatment options, other NANT studies,further surgery" and quite honestly, I'm not all that sure about what else he may have uttered as I was just so taken aback. Trying to comprehend, I asked, "Is there no other neuroblastoma patient who continues to light up on this MIBG scan and is OK?" The answer he gave was, "I know of one guy who is an adult who always gets a 'hot' scan and has no other symptoms, but his diagnosis was a bit different from Chandler's and he didn't get the 'big gun 'chemo that Chandler got either." Isn't that just what I wanted to hear? NOT!!!
Now, let me jump right in here to remind anyone reading, that Dr. Louis Rapkin and Dr. Bradley George are heros to us. They have always been completely, totally, and painfully honest with us. I couldn't function under any other circumstances. I am a cancer mommy who needs desperately to know all the whole, ugly truth to be able to deal with what may come along. I have to face the beast head on...I do NOT like surprises. I need to know the truth. But maybe I just never fully understood until this meeting just how worried Dr. Rapkin and his buds are about Chandler's scan still not getting clear.
Did I hope for a clear scan? You betcha! I still do. But now after talking with him this last time I am more on edge about it than I ever have been before. Was Dr. Rapkin shielding his worry before and just let it all out this time? I'm not so sure. Did he make us some sort of appointment to start some form of treatment? No. Did he detail a plan of possible treatment? No, he didn't. He just mentioned "other treatment options" and my mind started clouding over. Should I have asked more questions? Maybe, I was just frankly, too dang stunned. Have I emailed him/called his office? No, but I am, but you see, I've got to be ready for his answer, so I've put it off. Just like I've put off updating this journal. The drama going on is in my head. It is almost if I don't "confess it here" to all of you then, it isn't real. But, it is real. Chandler still has something that may or may not be cancer waiting to explode in his head. The biopsy taken of this same worrysome spot revealed mostly fully developed cells with only one small focus of developing cells. No active disease at all. Is it possible there could be one active cell still in there, missed in the biopsy last April? Sure, it is possible, but they do feel like the surgeon got a very , very adequate sample.
It is just that darn unclear scan. I did ask, "Didn't you tell me one time that Matured Neuroblastoma is harmless, but can still light up the MIBG scan?" Dr. Rapkin's answer was, " absolutely, it can." So....UUUUGGGGHHHHH!!! Sounds like that's what we've got here, to me. but so why did he start mentioning "other treatment options?" Like, I said, I've got to email him. Of couse I'll update when I hear.
Ok, so onto another drama. We come home weary and physically and mentally spent on Thursday night. We all go do our regular stuff Friday, then Saturday morning, around 8:30, Chandler out of the blue says,"my leg hurts." A couple of minutes later "my arms and hands hurt." Now, remember I'm not in the best of places mentally following the scan results less than 48 hours earlier and now Chandler says he is hurting????? After totally "losing it" by myself in the bathroom, I come out and call our local doctor's office. The receptionist encourages me to bring him in for a swab for flu. Yeah, it could be the flu!!! Yeah!! That makes a person feel achy!! I was delighted at that possibility. What warped mother wishes for her child to have the flu? Me! 'Cause it could explain away that bone pain. Well, since they do not take appointments on Saturday, we just had to wait and wait we did. By the time we actually were seen by the doctor Chandler was playing, running around, acting like NOTHING was wrong. NOTHING!
Then by Saturday afternoon, he started running a fever. Panic again....but not as bad because by now I'd called the sitter and his teacher at school and found out that nearly every single child in our small community (especially in our church) has had this weird 3 day thing where they have some body/head aches and a fever. (They'd told me that at the doctor as well but it was more real coming from Chandler's caregivers since that is who he has been around.)
So, Meme and Papa cut short their beach trip with friends to come through Moultrie to keep Chandler for me on Monday so I can be at work. Plus, they were worried about Jim Mac who was sceduled for a myleogram (sp?) of his back Monday morning that HIS mother was taking him for....again, so I did not have to miss work. What would we do without our retired parents to continue to pull us from the ditch? I don't even want to know.
Chandler is now over the 3 day thing and Jim Mac's scan of his back went well, we think. We actually don't know, his appointment isn't until March 10 to interpret what they may have found. Meanwhile he is in agony. That is a whole other lengthy saga. Just pray he is better soon. Puleeease!
I do want to finally end this thing with a Chandler story. Yesterday when I picked him up from Miss Pat, I looked in his bookbag to see if he had anything from school. He'd made the cutest mouse in their study about the letter M. Of course I asked him about it. Expecting him to start saying maybe some of the M words they'd worked with, he completely surprised me with..."Mama, Mouse is one, but Mice means more than one." Singular and Plurals???? Good gracious that Miss Jan and Miss Jessica are doing some amazing things with those little 3 year olds! We love and appreciate them sooooo much for all they do! Chandler Booth thinks the sun rises and sets on them. (We do too:)
After loading Chandler in the car seat, we start to drive a different way from our normal routine as I needed to zip by the YMCA to pick up Betsy from gym practice to head to church. We got to an intersection and Chandler said, "This is the way to the candy store." Candy store??? When we got to the next intersection I asked, "Chan, which way to the 'candy store'?" He motioned for me to go "that way." When I did this a couple of more times, sure enough, we ended up in front of Allegood's...Jim Mac's favorite jiffy store where he supports Georgia's Education system (Buys a lottery ticket) and buys soft drinks that I don't keep at home. BUSTED, Jim Mac!!! Now I see what you've been doing when you pick up Chandler from the sitter. No secrets with a three year old around! Hope you are ready for the dental bills you are creating! Heee Hee!
Thanks Jen, Steph, Mama Duck, DDD, Kim, SabO, and Jenny for listening to me worry over the phone or in person or by proxy. You all mean so much to our family. So do all of you who have continued to lift us up and continued to check this website for the update that seemed like it would never come. You all keep us going and are ready to pour on the prayer whenever needed.
In His grip,
Kim
Friday, January 20, 2006 3:57 PM CST Hi Prayer Partners,
I hate to always start my entries with the same apology so this time I won't. Just always know that "no news" means "good news."
We are already getting ready for the next scan. It will be in February. This scan is the nuclear medicine scan, where they inject Chandler with a radioactive material that attaches itself to neuroblastoma cells. Then the next day they look at the places where it attached. The material is just excreted out of the body if it has nothing to attach to, thus a "clean/ clear" scan.
Dr. Rapkin has already prepared us for an "unclean/not clear" scan. He said he is expecting that the scan will still show disease, but with less intensity than the last one. I do not think he is really sure if Chandler will ever get a fully clear/clean MIBG scan. The technology just may continue to get more and more sensitive. He's not professing to be a soothsayer...just he doesn't want us to be disheartened, if something is still there and as long as something is still there, Chandler HAS evidence of disease. But, God-willing, that is the ONLY evidence. If you look at him, or look at his other tests, it is like he NEVER had neuroblastoma. Yeah, I've talked about his scars *battle wounds, we call'em* but even those are not very noticeable! I know you may be thinking....well, girl, take what you can get and be happy. There are plenty of other mamas who'd trade with me in a second. I know that, I really do! But, I just wish we could get that clear scan so we could join the "No Evidence of Disease or NED" Club.
Last night Chandler and I were reading "Bear Snores On" before he went to sleep. It is a book that repeats "And the bear snores on" several times in the text and of course, he "reads" that part for me, each time it comes up. Well, on the back cover of the book, it has a couple of lines from the book, so after we'd read together, I asked him to "read" the words on the back. Of course he couldn't, as they were just pulled out of context, but he very surprisingly, identified that "That is an 'I', Mama. while pointing to the word "In". We talked about "I's" at school today." I asked, "You did? What words start with "I"? He replied with excitement(since he knew the answer, I'm sure) "ice and ice cream and I think bugs does too." I said do you mean, "insects?" He said yeah, they were insect-bugs. I thought that was pretty astute for a three year old. That Miss Jan and Miss Jessica are really teaching him a lot in just two mornings a week. I just wish they could make him mind better...but alas, that is our job and hard as it is, I'm so glad we get to do it.
Well, again I don't want to close without thanking all of you who still come to read even though my entries get more sparse and probably more boring. But like Gwen's mom said, boring is good.
Keep checking in on Catie at www.caringbridge.org/ga/catie as Monday, she will start, hopefully, her final phase of treatment. And also I want to publicly protest Camp Jack 's signing off Caringbridge. I know many of you who check on us, met us through them. Their presence here will be missed desperately, but I SOOOO understand, I just don't have to like it!!! :) Keep dancing, my friends!
In His hands,
Kim
Monday, January 9, 2006 9:04 PM CST Good Evening Prayer Warriors,
Fantastic news...if you have NOT heard/read yet, our friends the Wilkins got the news they've longed to hear...NO Tumor. Dr. Hudgins performed the surgery on Baby Noor from Iraq first and then reopened Catie Wilkins' little head for the third (and we hope LAST) time. Once in all he could find was scar tissue...NO cancer!
We rejoice with Jenny and Tre' but ask you to pray for protection for Catie from some pretty nasty after-effects of brain surgery. We pray for an uneventful, speedy, boring, normal recovery...no surprises, no drama, just plain old healthy healing!!!
Chandler still amazes us with his funny personality. Anyone who reads this who attended Sunday service at Trinity Baptist in Moultrie knows exactly what I mean....will describe in full detail later.
MIBG scans set up for February 7 (injection only) and the scan actually the next day, Feb. 8.
We still pray for NED "No Evidence of Disease" in 2006!
Thanks for checking in on us!
In His hands,
Kim
Tuesday, January 3, 2006 6:28 PM CST Hi Prayer Partners,
Just a quick update tonight. I just listened to my mobile phone's voicemail and heard great news and unbelievably sad news. Good news first: scans from last week are STABLE!!! Woooo-Hoooo, Thank you, God! This is fantastic news for Chandler!
The sad news I'd already heard, but in case you haven't, was that our Lighthouse friends, Lynne and Steven Bell lost their adorable daughter Gracie on New Year's Day. You can go to Gracie's site, if you'd like, it is /ga/gracie. They are such lovely people. Jim Mac and I join with so many in expressing our sadness for them.
Keep remembering Catie's upcoming surgery on Jan. 9. I can't imagine how stressed and nervous Tre' and Jenny must be in waiting for this. We pray that Dr. Hudgins is able to get it all this time and finally be cancer free in '06!!
Pray for Chandler to join the NED club in 2006!
In His hands,
Kim
Saturday, December 31, 2005 9:52 AM CST Happy New Year Prayer Partners,
It has been too long since my last update, but we have been sooo busy, just living life, preparing for Santa, enjoying getting together with family and friends, and yes, going back and forth to Atlanta.
Yesterday we made our second trip to Atlanta in 3 days for various tests. On Tuesday, Chandler had a CT scan of his chest, head, abdomen and pelvis with IV contrast and oral contrast....whew! We were at the hospital at 8:15 and didn't leave until 1:00. All the while Chandler had to sip the contrast and not eat because he has to be sedated. While we waited, some of the members of the University of Miami(FL) football team were going around visiting kids, taking pictures, etc. They were in town for the Peach Bowl. Man, were they HUGE!!! They were so nice, but I'd hate to know I had to face them on the grid iron! I told them about a teen aged girl that seemed to be in the hospital every time we were whose name was Claudia and she was such a fan of theirs. I told them how she had signs, flags, etc. on her door during football season and how she had a big sign with her name, "Claudia" and the "U" was the orange and green "U" like theirs. I also told them that she now cheers them on from heaven.:(
As far as we know the scan is OK. I'm having to take the position that "No news is good news." since we have not heard from the scan. I expect a call next week to confirm, though.
Yesterday, Chandler, Betsy , my friend, Malinda and I went BACK to Atlanta for 2 more tests...to check his hearing and his heart for damage from the chemotherapy. Even though it has been almost 2 years since his last dose of any chemo (Jan. 30, 2004)they have to keep a continued check on so many of his organs. It is sorta like they are checking him now for research purposes....to watch long term effects of what they have done to him. So far, he remains nearly unscathed, which is absolutely a genuine, dyed-in-the-wool , bonifed miracle. After the heart test yesterday, I had somewhat of a relieved feeling, but once the hearing test was completed, I just wept with thanksgiving. Both tests will have to be sent to Dr. Rapkin but both practioners told me verbally that Chandler's tests were for all practical purposes "normal." He has lost some hearing in the highest frequencies (which is what they have told us all along that Cisplatinum damages) but that in so far as conversation is concerned and being able to function normally in life, he appears fine. Isn't that just the most amazing news ever? Praise God! So this again proves that when Chandler doesn't do as he is told the first time, it isn't because he didn't hear me....it is because he is a typical, hard-headed three year old!
In early February, we will have to go back for the MIBG Nuclear medicine test. Dr. Rapkin has already told us that he expects it to still "light up." He is hoping it will at least, have dimmed in intensity to correspond with what they found in the skull biopsy last spring. In short, Chandler continues to seem great...normal...but (and that is a very BIG but) he has never achieved NED (No Evidence of Disease), unlike all our other Neuroblastoma buddies. We are ready to join the NED Club! We so want 2006 to be the year of NED for Chandler. Please join us in prayer that this will indeed be the year Chandler gets there.
Thanks to all of you prayer warriors out there who continue to read about us, pray for us, and love us from where ever you are. We are humbled by your support and grateful just doesn't cover it. We are amazed that Chandler is part of so many folks' lives. My brother said at diagnosis that he prays that not only Chandler will survive cancer but also that he will become a warrior for Christ and bring others to know Him. Of course I join Chip in that prayer and maybe this web site is the beginning of Chandler's reaching out to others.
I hope it also is a place of hope for the other parents out there who have just gotten a diagnosis of Neuroblastoma. The only two children who we met at the hospital who had already been diagnosed and fought valiently are now angels in heaven..God bless you Shelby and Jonathan.I'm not saying we are the only NB survivors ever...just the only ones we personally met on our journey. Thankfully, we also have met other NB kids after Chandler's chemo who are also surviving!!! We surely join those kids in living large in 2006! Yeah...Dustin, Jack, Gwen, Brandon, Ryan, Trenton, Kylie, Hannah, Katelyn, and so many, many others.
Have a blessed New Year and we will update in January!
Please also hold Catie close in your prayers as she endures yet ANOTHER brain surgery January 9! Pray this is the very last time they have to go in her head to get this beast!
In His hands,
Kim
P.S. I forgot to mention one more thing that I think is pretty important...yesterday when all the tests were complete and we were headed to The Cheesecake Factory to celebrate, my most favorite song came on the radio while we were driving...I turned it up loud and sang softly (as I am surely NO singer) the poignant words to Jenny Owens' song, "If You Want Me To". The words say, I will walk through the valley if you want me to...you never said it would be easy...you just said I wasn't alone. That is how I feel about cancer...it is a valley, a darkness, a fire that no one chooses to walk through, but I know without a shadow of a doubt that we did not go it alone. Jenny Wilkins...you know you are NOT alone either, my friend. I love you.
Monday, December 12, 2005 1:59 PM CST Hi Prayer Partners,
Quick update today...like I always say, no news is good news. The planned battery of tests is still in limbo. I mean, he still has all the tests to do, but the question is when? For nearly 3 weeks now we have been trying to get dates and times for appointments. Still waiting.
I'm sure you have noticed that I have managed to change the opening picture again! My, I am getting impressed with myself! (Ha Ha, just kidding) I am getting better but I still need my friend Staci to "hold my hand through the process". That shot was taken on Dec. 1 in front of a Hummer Limousine that we rented for Betsy's 10th birthday. . We thank Meme, Papa and Maw-Maw for footing the bill for the rental. She absolutely had a blast riding with her buddies. We told her next year she'll be lucky to get a Happy Meal from McDonald's for her birthday. But this year she just needed something ...or maybe it was that we thought she deserved something a bit more special...entering into "double digits" and she really has "gotten the shaft" a lot, even when we don't mean it to work that way.Hopefully it was an experience she'll never forget! Check out the last picture in the photo album to see all the girls! It was fun!
Finally, please do remember our friends The Wilkins(ga/catie) tomorrow. Their scan is Tuesday and also an lumbar puncture to check her spinal fluid. Please join us in prayer that the news is all good for them tomorrow.
In His hands,
Kim
Monday, December 5, 2005 8:27 PM CST Hi Prayer Warriors,
No real news on the medical front...I did, however, get a phone message from Dr. Rapkin's nurse, Stephanie that our urine numbers were again good. This is exactly what they expected , but it is always good to continue to get "routine, expected" news. Frankly, it is that "unexpected" stuff that throws us for a loop!
We are now entering into a time of careful , I guess you'd call it maintenance? Now, once a year Chandler will have to endure several tests for them to collect data. Of course all they've done up to this point is careful observation...it isn't like they've NOT performed test after test, but their focus has slightly changed...for the good I think. You see, up to this point, they watched Chandler for any tiny sign of relapse...especially since that spot on his skull continues to "be there" and on the nuclear medicine test, it still lights up very brightly. But now we are entering a new phase: "Let's see what sort of damage we've done to this kid, blasting him with "Big-GunChemo" for nearly a year, besides doses of highly focused radiation...is his heart normal? what about his kidneys? his ears/hearing? what about his bone marrow and other blood parts?" They will be checking all of this and basically charting his progress through the years. (I like Dr. Rapkin referring to this "over years.")
Of course this in NO way means that Chandler is now cured all of a sudden, but we've made it through this far so the focus changes ever so slightly. He will still have chest, abdomen, pelvis and head CT's, every 4 months, but no more monthly checks, and the nuclear tests will be once a year unless Chandler gives them a reason to do them more often...perish THAT thought!
So we celebrate the news that, honestly, we are still here and alive and doing beautifully, as you can see by the awesome pictures my coworker, Staci helped me post today. (Thanks, friend!)Chandler continues to learn so much at school, he shares better than most three year-olds, and is VERY, VERY active! He is such a handful! But everytime I begin to get exasperated with him, I think how blessed I am to have a three year old to get exasperated with...I know several ladies who'd gladly be exasperated rather than sad this Christmas.
Today again marks yet another "Cancer anniversary." Two years ago today Chandler entered into the first of two stem cell transplants at Egleston. It was a new hospital for us with new docs, and new nurses. Chandler had certainly had chemo before...but nothing like what he'd be getting over the next 6 days. They would completely destroy his immune system and rescue him from death with his own cells to regraft into his bones to create a totally new immune system. We faced mouth sores,life-threatening infections,feeding tubes, and a whole host of new and more serious side effects. This was the transplant where we had to give him baths 6 times a day, even in the middle of the night to wash off the chemicals that he would excrete from his pores. It was to say the least, a frightening existence in the hospital, but I tell you that God was in that room...sustaining Chandler and me. There is absolutely no other possible explanation for how well Chandler handled all that they threw at him. My favorite thing Dr. Haight(transplant doctor) would say was, "Well, let me go check on some sick children, since there doesn't seem to be one in this room." She also referred to Chandler as "thighs" which made me so proud! Normally to this overweight lady that might be considered a derogatory remark...not so in transplant...when his weight was monitored to the 10th of a kilo. Yes, I was proud he had those thighs! Just wish mine weren't so big Ha! But this isn't about me!!
I look at pictures of all the lines that he was hooked up to and am amazed. I remember his fevers. I remember the tension in his room when the doctors would come in and the relief I'd feel when they would once again say anything positive or encouraging.I also remember the terror when they would warn that it would indeed get worse before it got better...and it did. I remember reading posts on this caringbridge site from so many wonderful, praying people. I remember Meme and Papa coming in every single morning with a McDonald's biscuit and a drink for me. I remember leaving Papa and Chandler asleep during NYPD Blue reruns in the afternoon to go to "Group Therapy Sessions" for families going through this transplant. I'm sure there is sooooo much that I've forgotten and honestly, I hope with time (lots of time) I continue to forget. I do appreciate all the folks who "prayed us through" both transplants and for Mama Duck who brought me iced tea from her own household just because I said how much I missed it.
I have soooooo much to be thankful for.I have a savior who was born, endured a sin free life here and a painful death on the cross to save me. I have two absolutely beautiful, smart children, a husband who loves me like the day we married, both of my parents, who never left "their baby" in the hospital, many loving, supportive family members who in spite of whatever they've had going on have continued to pray and support us. Our chuch has blessed us in many more ways than I can express here. I have a job that I genuinely, sincerely love doing. I am blessed to have been guided by excellent medical care and so far the bills for it all haven't taken our home, cars, or basic necessities! (Course, we aren't done yet, either.) Ha Ha
Last of all, but certainly NOT least are all of our friends, old and new. We are so grateful to the folks we've met at Lighthouse, Camp Sunshine, CURE, online here at Caringbridge, and in person on the Aflac floors at both Scottish and Egleston. For our supper club friends in Moultrie, the older couple who organized a gospel sing to raise money for us, for my teacher buddies who drove to Atlanta to cheer me up. For Kim for spending the night with me at Egleston, for my former principal's daughter who prays like everything for many Caringbridge children. For Faye at the Central office who helped me keep a job and the all-important insurance during all of the time I was in Atlanta. Gosh, this list is long and in NO way exhaustive...just exhausting. Thanks for those who keep speaking Chandler's name in their prayers. We are humbled by our blessings.
Hope your Christmas is blessed. Ours already is!
In His hands,
Kim
Friday, November 25, 2005 3:31 PM CST Good Afternoon Prayer Warriors,
I am so thankful for sooo many things on this "shoppers heaven" of a day(The day *AFTER* Thanksgiving), but I just can't seem to find all the words racing through my small mind today... I am just so consumed with this heavy ache in my heart for our friends, The Wilkins.
If you read here very much, you know one of our closest friends that we've had the pleasure to meet on this stinking cancer journey is Catie Wilkins. Her family and ours just seemed to "click". Thus, Jenny and I have continued to commiserate (sp?) , laugh together, eat together, and yes, cry together. Sure, each family deals with "their" cancer in their family's own way...Jim Mac and I have "our" talks, but there is something about going through this with another cancer mommy. Honestly, I do not know what in the world I would've done without Jenny, Jennifer, Stephanie, DeDe, Kristie, NancyO,Mary, NancyK,*Kristin* ,Heather, Tabitha,Margaret Anne, Julie, Laura, Faith,*Carol* and just too dang many other cancer mommies!
I talked in my last journal about Victoria finally getting her victory over Medulloblastoma(She earned angel wings) and I told about Catie(who by the way has the same stinking dx) also finishing up her over two year battle. Well, I may have spoken too soon. Her MRI on Monday might be showing another tumor. Well, yes it is showing something, but we are praying it is dying because it did receive radiation. Heck, I don't care how it dies...I just am asking you to join me in praying that it isn't there when they rescan in 3 weeks.
Jenny explains it much better than I...go to www.caringbrige.org/ga/catie to read for yourself. She is an amazing person as are all of those I previously mentioned and those who I didn't. I promise, it helps to come to the computer and read about how perfect strangers will pray for you and your child in your time of need.
Jenny wrote last night about being thankful when happiness isn't present. I guess I've never thought about that....it seems the two are too tied together in my mind and I'm mad that any cancer mommy has to separate the two. I want Jenny to be happy AND grateful!!! I want that for all of us who have to watch our children endure hell on earth. Thanks for letting me blow off some steam.
Truly, I am very grateful, but somehow in thinking about Catie, Victoria, Carter, Shelby, Jay and several others I just can't for the life of me talk about our blessings, of which there are too many to enumerate. Today it seems selfish and thoughtless.
Maybe a more upbeat entry later.
In His hands, always,
Kim
Thursday, November 17, 2005 6:54 PM CST Hi Prayer Warriors,
I finally changed the photos in the album...I'm *trying* to do better...I am so techno-challenged...it really is tough for me. I don't understand why some are so big and others are reasonably sized...but I tried! Hope you like.
Last Thursday I went to the funeral of a BEAUTIFUL little angel, Victoria Leeann Newsome. Victoria earned her 'angel wings' after an almost two year, hard-fought battle against Medulloblastoma (brain cancer).
I actually heard about Victoria before her diagnosis from a teacher friend. My friend emailed me about this little first grader at her school whose eye looked like it was starting to turn in a bit, and they were going to Atlanta to get it "checked out" and would I please remember them in prayer? Holy Moly...did I ever expect to see them at Egleston while we were there for transplant??? Not in a million years! Unfortunately the eye problem was from a tumor in her little head! She was such a fighter right to the bitter end....it is just so tough to reconcile ANY cancer death....but an 8 year old?????
Our friend, Catie, just completed the last of her radiation treatments also on last Thursday and another cancer friend, Kendrie will finish up very soon...less than a month to go.There are so many "anniversaries" to commemorate in the cancer world....diagnosis, first chemo, last chemo, "rebirths" during transplants, start of radiation, end of radiation, port or central line removal, tumor removal surgeries, final lumbar punctures or bone marrow aspirations...the list just seems endless. We celebrate with these two sweet gals in their FINALLY getting done with therapy, but I must also include Victoria with these who have reached their finish lines because she too is now done with drugs, blood checks, central lines, nausea,etc. because she is now whole and perfect with Jesus.
Soon we will be celebrating a significant "anniversary" for Chandler too. God willing, at the end of February 2006, he will have made it two years beyond treatment. Yes,almost two years have passed since his second transplant! He was reinfused with his own stem cells on Ground Hog Day 2004. God has blessed us with some awesome, awesome time and we are so grateful for His mercy. We know neuroblastoma is notoriously sneaky and often relapses...yes, years later...but every day we DON'T relapse increases our chances for continued survival. We are sure glad to reach this two year mark and hope to "tick" many more off...
Last night I was reading a book to Chandler, which started with the narrator going to a family reunion as a child and by the end of the book, the narrator was now a grandmother going to a family reunion. So after reading the book, I did what all teachers do....I checked for comprehension.Ha Ha Ha...no, no tests, but we did talk about growing up and growing older. Chandler said he wanted to be a "Daddy" someday. You know, at the beginning of our cancer odyssey, thoughts of the chemo making him sterile paled in comparison to thoughts of his dying in treatment. But last night hearing a three year old say that he wanted to be a "Daddy" was tough to hear....
Well, I've rambled on long enough. Thanks for all of you who continue to check in with us. Please check out the new pictures in the album and I hope to get a newer opening picture up soon! BTW, the middle one was from Chandler's Thanksgiving Feast at school today. That was a blast! Thanks Jan and Jessica!
In His hands,
Kim
Thanks for continuing to pray for Chandler's total earthly healing.
Thursday, November 3, 2005 3:39 PM CST Hi Prayer Warriors,
Did you think we fell off the planet???? Just always assume if I'm NOT updating, it is because Chandler Booth is just living way too much life!!!
We have had such a wonderfully busy October! We've had numerous fall festivals, and parties to attend, we went to the beach, we went to Atlanta, Betsy and I went to Rome, the list just seems endless and frankly, it has been wonderful but I hope to get a "breather" before Christmas really cranks up!!!
In stark contrast to this October, I think about two years ago. I think about October 30, 2003 and just cringe. That was the day Chandler's primary tumor was removed from being wrapped around his aorta!! That was a very, very l-o-n-g day, waiting for the surgeon to so delicately remove that awful, viscious cancer from my sweet baby's tiny tummy!!!!I remember the surgeon talking to us before going to the operating room. He told us that he had "reserved the OR for all day, something like 12 hours or so and that he had no other commitments for the whole day...his calendar had been completely cleared for this surgery." I remember thinking...oh my, it is going to take that long??? But God did guide that surgeon's hands, and it is now gone. He took his time getting it, but now Chandler just bears the long scar.
It is funny though, in what you get used to. The other day I was watching my nephew and Chandler play. His little shirt came up a bit and I could see my nephew's belly and it looked strange to me....NOT having that scar all the way across it. I distinctly remember Dr. Rapkin remarking that, "hey, try not to worry, chicks 'dig' scars" well, if that is the case, Chandler should have his own flock!
Chandler continues to do soooo well. He loves school and is learning so much. We just appreciate every single day of good health! We appreciate all of you who have "prayed us through " these last two years of healing. Thank you for checking in and still continuing to mention us in your daily talks with Him.
In His hands,
Kim
Monday, October 17, 2005 9:09 PM CDT UpDATE: Just came home from Atlanta...very tired but soooo HAPPY!
Chandler's scan was just as we'd hoped.."STABLE!" More particulars later, just wanted to let all of you who got down on your knees for us know how grateful we are!
Love,
Kim
Good Evening Prayer Partners,
As many of you already know, the Booth family was able to travel to Seagrove Beach, FL for The Lighthouse Family retreat at Watercolor. The Lighthouse is a wonderful time for families to "reconnect" to each other and to God. In just a few words, it is a retreat for cancer families to have fun with their own families but also to support and cry with other families going down a similar road. There is no other program quite like this anywhere in the nation and it is all due to an oncology nurse from Scottish who had a wonderful idea that now has just completed its 6th summer of retreats. Melinda, you are really doing God's work!
The retreat is staffed by loving volunteers who just want to make your stay as wonderful and special as possible. As for the Booth Family, Hap and Hayden were just simply the BEST family partners one could ask for. We just can't say it often enough, how I'm sure Chandler wore them out completely with his never-ceasing energy, but it was so great to be able to go to "Common Grounds" and know that both Chandler and Betsy were completely happy and safe under their watchful eyes.
Hap and Hayden had a ton of help...so to all the volunteers who took time away from things you could've been doing at home, thank you from the deepest part of my heart! Jim Mac and I made new connections to other families, and Betsy and Chandler did too. Chandler LOVED playing with Jack in the sand, he loved getting MaryGrace's red ball (what a meanie), playing ring around the rosie with Gwennie, and getting thrown in the pool by Mr. Hap. Betsy loved playing with Jenny and Jill (our house mates from the "show-me state") playing football with Zach, and being a silly "girlie-girl" with Brayden and Brianna. She also loved it every time when Mr. Clay would pick her out to demonstrate the moves or hand motions to a song. There is really something very, very special about Clay. He has been touched by God to be able to reach out in such a positive way with all those young people. I am thrilled and sorta in total awe of this guy. He will do much to further God's kingdom.
It was tough going back to school today after such a fun-filled weekend...but it is only for 2 more days because we have to go back to Atlanta on Thursday for a scan on Friday morning. This time we have to be there at 7:30 to drink the contrast for 2 hours and then have the CT scan. Chandler does so well, but it is a very L-O-N-G day keeping him happily drinking the nasty-tasting contrast then putting him to sleep to do the scan then waking him to eat a bite and then going to wait to see the doctor at the clinic. It will be all worth it though, to get a "stable" scan. Then we won't have to do it again for 3 more months. Yippee!
Please DO remember us in prayer on Friday morning. I'm not really all that scared. Chandler looks absolutely fantastic. He certainly does not act at all like he is hurting anywhere,he has had no fever or any other nagging problem but it is still a scan and it could change our whole future. I guess maybe one day these scans will get easier, but they still are pretty tough right now.
We are back on accutane for 14 days! UUuuugh, I'll be so glad to finally finish that! This is Chandler's 5th out of 6 total rounds. We really should be getting done but we took time off in the summer to just enjoy the outdoors so now we are having to finish up. It was worth it though, to get to have that fun time outside during the summer.
Well, let me go to bed or to unpack or to wash clothes or some other less enjoyable chore. To all the other "Lighthouse Families" :The Dixons, The Masons, The Cobbs, the Scotts, the Moody's, the Williamson's, the Kings, the Zulovich's, the Escoes's, the Bells we love each of you so much and as D.D. said so well, one of the "good" things about cancer is the wonderful folks you meet on the cancer road. Each of you made our experience more meaningful just by your presence. Thanks for enriching my trip! Just wish the Wilkins had been able to join in...next year, baby! Next year!
In His hands,
Kim
Wednesday, September 28, 2005 6:53 PM CDT Hi Prayer Partners,
Thank you, Governor Sonny Perdue! Thanks to his "over-reaction" to the possibility of Hurricane Rita obliterationg all the refineries in Galveston, thereby creating the "mother of all gas shortages" by giving all school systems two days at home. Once it was announced at school that we had Monday and Tuesday off, I was speedily calling Meghan, the scheduler extraordinaire, to see about changing Chandler's appointment from Thursday (Tomorrow, the 29th) to one of our days off and yes, she finagled it!!! Thanks again, Meghan from a mommy with no sick days accumulated! It was good for another reason too. Jim Mac and Betsy were able to come with us. We also were able to lunch with our friends the Wilkins (Catie's family) at the Ronald McDonald House. Other than spending 8hours and 39 minutes driving on Tuesday and the $70 we put in the gas tank, it was truly a great day.
We were able to see Dr. Rapkin, he told us how super, terrific Chandler looked to him. Chandler left the normal bodily fluids for them to check...blood and tinkle... and we blew that popscicle stand!We hit a bit of traffic on the way home, but stopped at my favorite "going home from Atlanta exit...number 221" to eat an early supper at Chili's, since they have supported Pediatric Cancer with their "Decorate a pepper" campaign. We even got t-shirts that say, "I came, I saw, I colored" on them.Thanks Kilby, Wheeler and Miss JoBeth for decorating a "computer pepper" and sending it to us! They donated all the "pepper money" to St. Jude. It definately makes me want to eat with them again...not to mention that the Monterey Chicken is yummy! But I digress...
I must share one more thing that happened at Wednesday night service at our church. The pastor had just gone over the many prayer requests when the youngest choir group quietly (NOT) comes in the fellowship hall where we are meeting. Chandler is the smallest and youngest of the "choir members". The choir leader "herds" them all to the front to stand on the raised platform to sing. The leader had not told us parents of this performance( I would've put Chandler in a clean shirt, had I known) but anyway they sang a song about not "getting to heaven wearing roller skates 'cause you might go on past the pearly-gates" or something like that. Now, like I said, Chandler is the youngest, smallest and the only boy in this group of 6 children so you already notice him even before they sing a note. But once they started singing acapella, Chandler started doing the motions to the song as they sang. None of the other children were doing it....it was hilarious and precious all at the same time...he was lifting his arms to God at appropriate places in the song and squatting down low at other appropriate places...I just couldn't help but cry with such incredibly grateful tears. I know every mama out there is proud of her little star dancer,star singer,star soccer-player,star artist,star ball player or "star whatever" but no one was prouder of a singin' little boy tonight than this mama. Two years ago, in the midst of all that horrible chemo, pending transplant, etc. I cried selfishly for myself because I was so very afraid that I would never get to sit in an audience to see Chandler "carry on" like he did tonight. Well I surely saw it tonight. I pray it is just the first of many I am priviledged to witness. I also pray for all you other cancer mommies out there tonight, that you too will get many, many opportunites to watch your "stars" do their thing.
Special prayers are needed for Victoria /ga/victoria who is at St. Jude tonight. Also for Catie /ga/catie who will begin radiation tomorrow as the final leg of her cancer battle. Also, Prayer of thanksgiving for clear scans for Ryan. His parents were really bracing for some pretty tough news and God delivered a clear PET scan!
I saw my pastor taking some pictures of tonight's unexpected performance...I PROMISE to put them on this site if at all possible.
Thanks for your continued prayers, everyone!
In His hands,
Kim
Friday, September 16, 2005 5:26 PM CDT I hope to write a longer entry later, but I didn't want more than a week to go by before I updated again.
Chandler continues to do sooooo well. But he is ssooooooo DRY! We are soon to be finishing up round #4 out of 6 of the accutane (AKA "craputane") . It is just so yuckyy to see him scratch and it make a mark like it does. And then when it is time to be off the stuff his little skin recovers like I can't explain. It is like a miracle only a day or so off it and you see a marked improvement. Thank goodness it does, though.
Gotta go pick up Betsy from the gym now.
Hopefully I will have a more in depth entry later.
Hopefully I will one day understand how to upload pictures too!!! Sorry I haven't put any school pics up....I'm technically-challenged (AKA too stupid to do it myself)
The luncheon was unbelieveably wonderful.
Thanks for checking in.
In His hands,
Kim
Friday, September 9, 2005 3:15 PM CDT Hello Prayer Warriors,
Have I forgotten about Caringbridge? I bet some of you thought I have.....it has just been way too long since my last update. My apologies.
Ask any teacher, the beginning of school is a very trying time! I love it, but I just never seem to "get it all done". Enough about me. Let's get on to Chandler.
We went to Atlanta for a CT scan and a routine physical check up on Tuesday, August 30. Well....the check up was good, but the CT was....questionable??? Let me explain further. In June Chandler had a CT, but just of his skull. I thought it was as a follow-up to the skull biopsy he had in May so I did not question why they weren't also scanning his chest, abdomen and pelvis as they usually do. Well, that was an error...they SHOULD have done it all so we had to do the chest, abdomen and pelvis THIS time.
I knew something was "up" when they rescanned is lung area. Of course the technicians gave a line of bull about it being a "computer problem." Yeah right. So when we went to the clinic, Dr. George told us that the radiologist *thought* he might have seen *something* in the lower lobe of one of Chandler's lungs and that the lymph nodes in Chandler's pelvis *seemed* a bit enlarged. Well, Dr. George told me that he absolutely DID NOT see at all what the radiologist was seeing. He said we have nothing to worry about, but that "we will all feel a whole lot better when Chandler finally gets that illusive clear MIBG scan" (that we've never had.)
So....we live with that big question mark hanging over our heads like Pigpen's cloud of dirt that ever surrounds him. But we also have other things hovering...angels. Angels that watch over Chandler and the rest of our family.
So, back to the questionable scan. It has been our experience that Dr. George tends to be more pessimistic and worried than Dr. Rapkin. We like Dr. George A LOT, it is just that he tends to worry more with us and he was sooooo NOT worried about this scan. He is so NOT worried that we aren't even rescanning him until 2 more months, not next week. So I choose to not be worried either. And not to be pessimistic, but our reality is that IF Chandler is indeed relapsing, there isn't one darn thing they can do to stop it. Maybe one day there will be something, but as far as medicine knows today, if Chandler relapses, he will die. And do I really want to know sooner if that be the case? No, not really. If knowing sooner could help him, then yes, of course we'd want to know.
Again, I promise, I'm not even thinking Chandler is relapsing. But that is where it stands for us every day, 24/7.
That is why research is so desperatly needed, so that IF Chandler DOES ever relapse, then maybe they could turn it around and stop it.
That leads me to tell you that I am so very excited about tomorrow. Tomorrow is the Quiet Heroes Luncheon in Atlanta for all of us "Cancer Mommies". It is being held at the Westin in Buckhead and Lance Armstrong's mother and Alex Scott's(Alex's Lemonade Stand)mother are the speakers. I am just so excited to get to see so many mothers of children that I read about here on Caringbridge. It is a big fundraiser for Curesearch. I hope it breaks all record for dollars collected. I bet I don't sleep 2 hours tonight...I'll be so excited!
Chandler is loving Preschool! Miss Jan and Miss Jessica are just awesome! Chandler loves learning and he is doing it so fast! Gosh, I don't mean to gush, but I am so proud that he is doing normal things that every other 3 year old is doing!
Chandler is in the midst of round #4 of accutane. You can tell it too. His little face gets red, his lips get dry and crackly, and we can't keep enough moisturizer on him to keep him from scratching! He is just sooooo dry! But it is such a small price to pay for a big dividend, cause in the end, this may be the key to maturing those few little cells that were in his skull biopsy in May.
Just in case you might be wondering we will probably do another MIBG scan some time next year....I'm kinda thinking in Feb? March?. Unless something happens and we sure pray that it doesn't, they just see no need to inject him with that nuclear medicine. Dr. Rapkin says sometimes too much info can be a confusing thing. I see his point. I want to give that accutane time to work and time for his little body to "mature out" those cells and to get that clear scan we keep praying to get. I'm fully and totally expecting to get it this next scan.
Well, I've droned on enough. I sure have missed writing to you all, can you tell? I just so appreciate how many of you keep us in your daily talks with our heavenly Father. I appreciate the messages you leave on the guestbook, and also the sweet surprises that Chandler keeps getting in the mail. You all are just awesome! Can't wait to tell you all about the luncheon...
In His hands,
Kim
Wednesday, August 17, 2005 7:01 AM CDT Good Morning Prayer Warriors,
Today is momentous in the life of Chandler McDonald Booth...he is going to "school" for the first time. Yes, our adorable three year old is attending preschool today at Trinity (our church). He will go from 9-12 on Mondays and Wednesdays. Betsy went to Miss Jan's class when she was three also....wasn't that just a week or so ago????? I guess not since she started fourth grade last week!!!Yikes!!!
Monday night was "Parent Night". I went and yes, I was the OLDEST mother there!!!! I guess I better get used to it. Having a baby at 35 is I guess unusual. Oh well, I really don't care. I'm proud as punch to be able to be taking him. Last night was "Open House" where we were suppose to bring the children so they could see the classroom, meet the teacher, etc. I wish you could've seen him. He walked right up to Miss Jan and hugged her, told her his name(like she didn't already know it) and proceeded to play with some trucks and then moved on to the kitchen center to make pretend pizza!! He never once worried about us leaving him(several other kids were nervous and crying). Heck, I think he would've stayed by himself then! Of course I took pictures, I hope they come out...I still prefer film and Jim Mac didn't bring the digital.
I also want to share that Betsy was baptised on Sunday. It was a very moving service, since it was 4 children getting bathed in the spirit. She was first and was very serious about it. Jim Mac and I lit a candle in her honor down front and then the candle and holder were her "keepsakes." I am so proud she has matured in her faith and made this oh so important decision on her own. I know she has God in her heart!(Frankly, she always has.)
Papa seems to be better. He is actually wearing a "holter" sp? monitor to try to pinpoint his irregular beats. At least his coughing is better. He is home, playing golf, the ususal stuff. Thanks for mentioning him in the guestbook and for the prayer of healing.
Thanks for the prayers of continued healing for Chandler. We have 4 more days of Accutane and then we will be halfway done with the six total rounds. Yeah! His skin is looking pretty raunchy...peeling, red, etc. He takes it well, though. Better than I would!
One more mention...please pray for wisdom and clarity for Catie's doctor, Dr. Claire, as she is tring to make the best decision for Catie's next phase of treatment. Pray for Catie's parents too, as the wait is excruciating!!!!! Her site is /ga/catie
In His hands,
Kim
Sunday, August 7, 2005 11:30 AM CDT Good Afternoon Prayer Warriors,
Wow, it has really been quite a week! Chandler is still doing so well. We will again start taking accutane tonight for 14 days. This will begin his third of 6 total rounds that he must take. At our last doctor's visit, Dr. Rapkin gave us the month of July off so we could enjoy the outdoors, particularly our Lighthouse Retreat beach trip. Well, Dennis ruined Lighthouse but we still took advantage of the break and have enjoyed being out in the sun.(We even extended into August a bit too)
Betsy started FOURTH grade on Friday! I taught 4th grade for 14 years, I can't believe she is that old! She loves her teacher (I do too) and we expect her to have a super year.
My students came on Friday too. I have a nice group also...well as far as the first day indicates....they seemed nice. It is good to be back in a routine.
Just to comment on our summer though, it was by FAR the best we have ever had with Chandler. He has played, skootered, rode all over our yard on his battery-operated chopper, swam, attended Vacation Bible School, birthday parties, gone to the waterpark,ridden jet skis, and yes, played with trains! He is as active as any three year old I have ever seen. He has totally enjoyed himself. I thank God for every moment of it!
In case any of you out there know my daddy, Papa as we call him, has had a really tough week. On Monday, August 1, he went in for his first colonoscopy. The colonoscopy went fine, but while under sedation, he was on a heart monitor. Some time during the procedure, his heart started beating irregularly..."throwing PVC's" is what they called it. They put him immediately in ICU with all sorts of monitors, did a stress test, heart catherization, and many other tests that all came out good (PTL). The irregularity is still present and he will see a cardiac physiologist to see if he needs medicine or a procedure to correct it. He also is dealing with a case of pneumonia, but thankfully, he came home Friday and is recuperating nicely. We came to their house on Saturday. He is understandably moving sorta slow, but very much himself. We are so grateful to God for all the good news we've gotten on him this week.
Well, that's about it for us this week.
Until next time!
In His hands,
Kim
Wednesday, July 20, 2005 8:33 AM CDT Before I forget...new pictures added!
Good morning Prayer Warriors,
There is not much to tell this morning...but in having nothing to tell, that actually is a lot. Chandler continues to be an active, outwardly healthy, three year old with some serious "love issues" for Catie Wilkins (see Catie's opening picture at /ga/catie ).
The Lighthouse Family Retreat has been cancelled for next week. Thanks, Hurricane Dennis! The beauty of going next week was there were so many families that we actually know that were going as well. Now, the Lighthouse Crew has generously offered another time, but I'm sure many won't still be able to go. I'm really bummed, so is Jim Mac, but of course, it could NOT be helped. So if any of the families want to try to organize and select another date together again, we are still open. Maybe write on these guestbooks? Jen, Steph, Tabitha, Kristie, Tiffany, Jenny, Carol, and D.D. what about it?
Yesterday, Betsy's age group (2nd-6th grade) had a "pudding fight", yes, I said pudding, at church. Our new youth pastor is doing some pretty fun things with our children. I took pictures, if they come out, you will see them here. It was hilarious and Betsy had so much fun. It is so great to see her forging some strong, loving friendships with other kids at church. She has known these kids all her life, but she is maturing in her faith and it is great to see her having fun with other kids of faith. Man, she will turn 10 in November...teen years are coming faster than I'm ready for them.
Last night we drove over to my grandmother's house, about an hour or so away. She has been having back problems and we went over to cheer her up. I was so proud of Chandler and Betsy. They went right on in to her bedroom and kissed and hugged her quite a bit. My Daddy, who has been staying with her, said that was she best she had looked all day, getting love from two of her great grans! I know she loved it!
Then we went to my aunt and uncle's house to swim a bit before going home. Chandler and Betsy had a complete and total blast swimming with friends and family. Betsy was playing "Marco Polo" with the older kids while Chandler must've jumped off the side of the pool 9,000 times. I bet my aunt's arms are sore this morning from catching him. What a blessing it is to just be together! We came home tired but feeling so wonderful. There just is nothing like family.
Well, thanks for checking in. Don't stop writing in that guestbook! We still need those prayers!
Love,
Kim
Friday, July 15, 2005 5:06 PM CDT Good Golly Prayer Warriors,
Here it is Friday afternoon and I am happy to report that:
#1 Chandler is doing so well! Praise God from whom all blessings flow!
#2 Chandler and Betsy , two neighbor girls, and their Jack Russell puppy are happily out jumping on the trampoline in our backyard. Jim Mac is on the lawn mower. Life, my friends, seems oh so sweet!
#3 All laundry, yes, I said *all* laundry is done at the Booth household.(However, supper isn't even planned much less prepared.)
#4 We are planning to go to the CURE Family picnic tomorrow. My mind can't help but go back to last year's picnic...it was the last time we saw Carter Martin, we knew his fate at that time, but he was vibrant as ever, playing with Big Bro'Candler and steering those remote-controlled boats on the Lake. That image is burned in my brain...I'm so glad God is merciful to let that be what I remember of that brave sweet kid. Catie Wilkins was there too albeit NOT walking or talking very much. She's walking and talking better now 8 days after brain surgery than she was that day! Again, God is merciful, isn't he? I looked at pictures from last year's picnic...Chandler's hair was just really coming back in and his face was red from being hot punctuated by Accutane! He and Betsy both have grown so much since then!
#5 We hope to make a quick stop on our way home at Egleston to see the famous Mama Duck and so many others who steered us through transplant. It will be good, encouraging for them to see our vibrant, full of life Chandler. The job they do is so important and full of thankless, and often discouraging scenerios. It feels sort of victorious(is that the word I am searching for?) to walk back in that transplant area WITHOUT a central line and WITH hair! I'm absolutely not bragging, I'm just so darn grateful.
#6 Our friends who have a beach house had a mess to clean, but still a lovely house!
#7 Did I mention that it is so great to watch all the kids play together outside? Cancer DOES make you appreciate simple things.
#8 And finally, I'm so happy to think of our wonderful, supportive friends who we may be lucky enough to see tomorrow. It is one thing to read about them here on Caringbridge, but it is altogether different to hug 'em, break bread with 'em, and laugh with 'em. Jack, Madie, Kendrie, Brandon, maybe Trenton?, Mary Grace, Gwen, Jacob, I wish Kylie, maybe Jake?, and the others who will be there in spirit.
#9 Maybe Hurricane Emily will go away!
With a grateful spirit tonight, we are SO in His hands,
Kim
P.S. Check out the opening picture on Catie's page (ga/catie) or just click the link at the bottom of this page. I love it, thanks Jenny!
Sunday, July 10, 2005 10:36 AM CDT Hi Prayer Warriors,
Whew what a day we had yesterday! Jim Mac , Chandler, and I left our driveway at 6:41am headed to Atlanta (again) but this time it was to do something fun! We went to the Atlanta Center for Puppetry Arts to see "Snow White and the Seven Dwarfs" performed by a professional puppetry troup from (I think) Bulgaria. It was awesome! It lasted about 50 minutes and Chandler sat through the whole thing! Then they had a "make your own puppet" workshop and then a picnic all sponsored by Camp Sunshine! We were so happy to see so many of our fellow cancer friends...Jack, Madie, Jacob, Ryan, Gwen, and probably others I'm not remembering right now.
After the show, I left Jim Mac and Chandler to do the workshop and lunch while I drove up I-85 to meet up with our church bus to get Betsy. She had spent the week at Centri-Kids Camp (Baptist church camp) at Toccoa Falls. The closer I got to the meeting place, the faster my minivan went. She was a sight for sore eyes! Somehow it was different to be separated from her with it being her away from home. (During chemos, transplants, etc. it was Chandler and I gone and she and Jim Mac at home.) She was just as I'd expected, exhausted. She had an awesome time. I was glad we had some time in the car to let her tell me about it. Thanks Meme and Papa for paying for her to go. She already says she can't wait to go back!
Betsy and I drove back to the puppet center to collect Jim Mac and Chandler then we headed up to visit Catie Marie Wilkins, A.K.A. "Supergirl". If you haven't heard, Catie had major brain surgery on Thursday, spent one night in ICU then one measily night in a reg. room then DISCHARGE! WoooHooo! They went to the Ronald McDonald House...as they live a long way like us, just to be absolutely sure. When we got to Ronald, there was Catie snuggled with her mom on the sofa watching a movie on the big screen TV. She wasn't her normal talky-self, but she looked so good considering what she's endured! (Let's also remember she just had a chemo treatment like 2 weeks before the surgery!) Jenny and Tre' were still in a state of shock at having been discharged. Please pray they continue to heal, get needed rest, and get good pathology from the tumor they removed from Catie's brain. Her link is at the bottom of our page.
To clarify our CT results that we got this week. They were stable, unchanged. This is the best news we can get as they have told us that because Chandler had a tumor in his skull and it was radiated that his head pictures will always look like they do. Its kinda like they are now "frozen in time" and as long as they look like they do it means nothing is going on, which is pure joy! The reason they keep doing CT's is to look for change. At this point, any change would be a cause for concern and they would do further tests. Until that time, a CT is fast, relatively easy and minimally invasive compared to the other tests...bone marrow aspiration, MIBG scan takes two days, uses radioactive material, etc. I think you get the point.
We are glued to Weather Channel hoping Dennis will spare everyone but especially Santa Rosa Beach and St. George Island Beach. Santa Rosa is where we are supposed to go to Lighthouse Family Retreat with other cancer families in two weeks and St. George is where our friends have a beach house that they have so unselfishly shared with us on NUMEROUS occasions!! We hope for NO loss of life at Dennis' hand.
Well, as always, thanks for checking in.
In His hands,
Kim
Thursday, July 7, 2005 7:13 PM CDT Good Evening Prayer Warriors,
Chandler, SabO, and I arrived home safely tonight from Atlanta. Chandler's scan went off without any hitches or surprises.(Praise the Lord!) The results were just as expected....no change....stable. In the cancer world, stable is a pretty good place to be.
Dr. Rapkin was exceedingly pleased with Chandler's physical exam. Each visit, he feels Chandler's abdomen, mashing in deeply to see if he feels any tumor returning. During chemo the docs would do this every day we were in the hospital...they could literally feel it shrinking chemo to chemo. Now, they expect to feel nothing and yesterday yet again, Chandler didn't disappoint. Yippee! Dr. Rapkin continues to be pleased with Chandler's activity level, his hearing and speech...just really everything. We have been so blessed to not see a ton of negative side effects from all he has been through.( I almost do not even want to say that...because who knows what tomorrow holds?)
I am late in updating because we spent an extra day in Atlanta to support our cancer buddy, Catie. Catie had a second look brain surgery today and since we were already in Atlanta, we just opted to stay so we could join them at the hospital to wait for her surgery to come to an end. As far as I have heard, she did well during the procedure and was already talking, which is a good sign. However, what we hoped would be just simple scar tissue has proved to be tumor. This isn't the end of the world...they have a lot of options. Catie still has a lot of living to do (like marry Chandler, hee hee.) If you want to find out more it is ( /ga/catie )
We also had the chance to visit with our other cancer buddy, Jack ( /ga/campjack ) today. His sweet mommy brought both kids and pizza up to the NICU waiting room. I had not seen baby Kate (Jack's beeeeeautiful lil' sister) since she was just a babe in arms. She will soon be a big one year old! Jack looked awesome! He wore his "Lucky" t-shirt to do his part for Catie's surgery today! What a super star and a super family.
I gotta close this update by saying once again that I hate cancer....I mean I *really, really* hate cancer, but I love the loving spirit that it brings out in people. I love the friends we've made...I hate our common bond, but the friendships are such a blessing! God sure knows what he is doing, doesn't he? Thank you Caringbridge readers...you are part of our extended family too and we are so very blessed by you and your prayers.
Praying for all the ones suffering out there tonight.
In His hands,
Kim
Wednesday, June 29, 2005 11:20 PM CDT Hi Prayer Partners,
First--Chandler continues to tolerate the Accutane very well. Other than some redness and dry skin, you can't tell he is even taking it. It makes his skin so sensitive, though, that if he bumps his leg, it makes a spot. Once we stop the pills, amazingly the spots clear up and his skin looks normal. It could be soooo much worse.
Speaking of worse, a little boy, Ethan has been heavy on my heart. If you would like to visit.../ga/ethan....he has relapsed and his parents are understandably devastated. I do not even know this family personally, just through Caringbridge, but it soooo could be us. I just hate cancer. I hate how it robs children of a normal childhood and how it steals parents' chances of raising their children.
When we thought Chandler had relapsed in his lungs earlier this year, I was talking to a parent of one of my students about it. Through tears, this gentle , sweet Dad told me that he didn't know what I believed...but that his religion teaches that if a parent loses a child that God gives the parents the gift that they will get to finish raising their child in heaven. Now, I don't know if I believe that. Frankly, I've Never even thought about it before he said it. But it is very comforting. I believe God is merciful and can do anything so the idea is certainly plausible and like I said before, it is comforting for me. Sorta seems like the least God could do, doesn't it? And maybe in heaven, we won't ever make any mistakes like we do on earth! Maybe even the teenager years will be easy in heaven!Ha Ha!
We head to Atlanta on Tuesday afternoon, July 5 so we can be at the hospital by 7:30 Wednesday morning July 6. The CT will be of his head only. They will be looking for the first time after the skull biopsy in May. Hopefully, Chandler will tolerate the quick pictures easily and more importantly, we pray the pictures will show only healing and NO CANCER!
If possible, we are going to stay Wednesday night as well since Catie's brain surgery is Thursday morning..../ga/catie... I want to be as much of a support for Jenny as I can. With Chandler around, she might wish I'd just go home. Maybe he will be calm. Maybe.:)
Gotta go to sleep! Thanks for checking in on us. We do so appreciate it.
Happy 4th!
In His hands,
Kim
Sunday, June 19, 2005 2:51 PM CDT Hi out there Prayer Warriors,
I know, I know, I've been pretty slack about updating. Frankly, it has been for a very good reason...we have been so busy!
Chandler is doing great. We went to see Dr. Rapkin on June 7 and frankly, it was a super trip! Chandler cooperated nicely leaving appropriate blood and urine specimens for them to check. Blood looked great and urine was still normal! Praise God for normal! Actually, the numbers were as low as they've ever been! Lower is better!
He is still taking the accutane...two weeks on and two weeks off. We will start his second round tonight (to get one more afternoon outside.) and then we will be back "inside" again as the accutane causes him to be ultra sun sensitive. Staying inside is a small price to pay, considering the alternatives (central line hanging out of his chest or worse).
Yesterday we finally celebrated Chandler's third birthday! It was great! He enjoyed scootering around the skating rink on his new "Harley-Davidson" three wheeled scooter, complete with "pleather" elbow pads and knee pads. He loved the way he looked! The Thomas the Tank cake was delicious and adorable. Much much thanks to Lisa for making it!
Chandler continues to grow and act like he feels so good. It is such a blessing. I know he is far from being "out of the woods" as far as neuroblastoma is concerned. As a matter of fact we will be going back to Atlanta for his first post-surgical CT of his head at the beginning of July. There are so many hurdles Chandler still must cross...namely finally getting a totally DARK nuclear med scan(that is something he has never done) but somehow I have a peace that it is coming. Sure there are times that doubt creeps in and I worry. That's human. Thank goodness, we have God who can ease back into my mind and smooth me back out.
Another big event in our family is that Betsy have made a public announcement that she has asked God into her heart and requests membership to our church. She will be baptised sometime this summer. Jim Mac and I are so proud of her. Vacation Bible School was more meaningful for her than ever before. However, Chandler thoroughly enjoyed himself too. Thank you to all of you out there who work so hard to make VBS a fun, meaningful time for the children in your communities. We are seeing its fruits first hand.
I guess I just keep writing since it has taken me so long to update. I do have a prayer request for our friend and fellow cancer-fighter, Catie. Catie has a different cancer, but she is like us, that she keeps on getting "something" on a scan...not necessarily cancer...but not necessarily NOT cancer, either. The decision has been made to go back deep in Catie's brain for a second look. Understandably, her family is pretty stressed, waiting, dreading the pending surgery. Her mom, Jen can tell you more, if you like. Their site is the same as ours, just catie on the end instead of chandlerbooth.
Gotta go make chicken and dumplings for Jim Mac in honor of Father's Day.
In His hands,
Kim
PS To all the 1985 Grads, loved seeing you at our reunion.
Thursday, May 26, 2005 2:02 PM CDT Hi Prayer Warriors,
Have had some "technical difficulties" after a lightening storm the other night but now we are back online.
Chandler started Accutane on Sunday. He is taking the pills beautifully! The trouble is the side effects....dry skin, redness, dry mouth, etc. Thanks to the "cancer mommy" who wrote on our guestbook to try Biafine. The pharmacy has ordered it, hopefully it will come in soon and we can try it.
Our summer has begun in earnest today! We have so much planned, I hope we can get it all in! It is so wonderful to have a lot to do....VBS...different daycamps...even an overnight camp for Betsy! Sometime in there I hope we get some REST!! Hee Hee! I guess I'm just so darn grateful to get to be busy!We even have a skating party to attend in an hour! Yippeee! Can't wait to see ol' Chandler skate! :)
In case you've not read about us in a while, we got great news on the 18th...the pathology from Chandler's skull biopsy appears to show the cancer cells are "maturing" and eventually dying. We will have a head CT in June and another nuclear (MIBG) scan in about 5 or 6 months. Dr. Rapkin is hoping (expecting) that scan will indicate the same as the biopsy...dying cells...by growing dimmer and dimmer. I know it is a long way away, but please pray specifically that those cells ARE maturing and dying and that the scan will show that too.
Thanks Brenda (in Pitt., PA) for the beautiful cards! Chandler wanted me to read them to him again this morning while he enjoyed waffles. He made a picture with the stickers! You are so thoughtful and sweet.
As always, there are other children who so need your prayers. McKenzie has scans on May31 (Chandler's birthday). This is just "routine" but nothing is routine when talking about Pediatric Cancer!
Gotta go to the skating rink!
Love,
Kim
Thursday, May 19, 2005 2:32 PM CDT Hi Prayer Warriors,
I am so sorry for just now updating. All of you school folks out there know this is a crazy, crazy time, not to mention that I have missed some days and am trying to get caught up.
We went to see Dr. Rapkin on Tuesday. Our visit was brief and AWESOME! I had said here before that once the biopsy and full pathology report came back that the docs would all meet, discuss and decide what to do from here...put Chandler on a study to give him a non-FDA approved drug or to regive Accutane again. Either is still very good as neither is administered by IV!
Well, Dr. Rapkin corrected me on this point. Actually he said the decision was not between Fenretinide and Accutane, it was between doing NOTHING at all or to take Accutane. Wow! This came as a big surprise. Dr. Rapkin was "plumb giddy" explaining how delighted he was with the pathology report. His words, "In an otherwise pretty crummy month, Chandler is my shining star."
Dr. Rapkin is a fabulous doc, but as many of you who know him, know he is not one to "Flower things up." He is a straight shooter. When I asked him why was he just bubbling over....was it because he thought we'd just bought more time or did he think MAYBE, just maybe did he think we might be on the road to being totally well? And he said, I think this might be it for Chandler...meaning...that Oh my Gosh, it is even hard to type...one of these days he might be cancer free in the near future. He's NEVER, EVER said that before.
He was quick to remind me that this is cancer we are talking about...even more specifically neuroblastoma....and it is known for relapsing. Relapsing late...6 or 7 years down the road. But still to "entertain" the thoughts that Chandler might come to Sunset to school, and then get to go to middle and high school! During these last 2 years, I prayed to get to tomorrow, not adulthood. My hands shake just typing it.
So now we are going to take Accutane again for 6 months, two pills in the morning and two pills at night. He's done it before and I pray he can do it again. For some of our cancer buds out there, 4 pills a day ain't squat! I know Chandler can do it!
After floating out of the Aflac office, Papa, Chandler and I ate at Copeland's Deli and then went on to meet with the "Staple- Puller-Outter-Lady" at the neurosurgeon's office. Chandler did great until she pulled some of his little hair! Yikes! I did my best story-telling that I could muster to get his mind off her pulling staples from his scalp. (Can you believe they don't give them anything when taking them out?) Sounds cruel...but it was over pretty quickly. I saved as many staples as I could to show him one day when he's older.
So now we pray that those cells continue to mature and DIE (as they are supposed to) and Chandler tolerates the Accutane well. Hopefully this is the last leg of our "pharmacy-journey" and it is just Tylenol/Advil after this. They will rescan Chandler and Dr. Rapkin just says he's ready for the MIBG scan to go "dark" ASAP. Hopefully the next scan will indicate the cells maturing, as the biopsy did.
I know this is long, but I must also add here that I am the proud mother of the Vice President of Sunset's SGA!! Yes, Betsy won her election, which was tough because all of the kids she ran against were all very formidible opponents! We are so lucky that she is in a very strong group of children...I'm sure it won't be the last time these same kids all try out for the same "office" or part or whatever. Jim Mac and I are so proud of her. It's tough to be the "other" sibling (the NOT sick one). God just knew she needed it.
Saying prayers for so many..Catie getting BIG chemo, Gwen scary trip to ER, Jack on his wish trip, Kylie in NYC at Memorial, McKenzie heading for scans and saying her tummy hurts, Skyler relapsing, oh there are just too many to adequately list here.
Still timidly claiming the beginning of a full- out-n-out total healing! Join us in this prayer.
In His hands,
Kim
Thursday, May 12, 2005 9:00 AM CDT Good Morning Prayer Warriors,
Praise the Lord from whom all blessings flow!!! We got one more blessing this morning with the phone call from Dr. Rapkin. Here's what he said as best as I can relate....
The surgeon took 4 samples from Chandler's tumor in his head. All four pieces had "matured" (or safe) cells. There was only one sample that had a single focus of live neuroblastoma. I think this means three of the samples were all completely MATURE while in one of the samples, there was just one little clump of active disease. Now, any disease is bad, but Rapkin seems to think it will mature too as it is surrounded by mature cells.
To make it mature, he wants Chandler to take one of two drugs...either Accutane or Fenretinide. Accutane, he's already taken and had little problems. The Fenretinide is not FDA approved as of yet, but if a study is open, then it can be given. It is the preferred drug because it is sorta like Accutane "beefed-up.(Stronger, more focused, etc.)
These drugs are both administered orally...that means NO line, no port, no harvest, no transplant. It means he keeps his hair, gets to bathe normally, go swimming, just be a normal three year old!!!! Thank you, Jesus!!!
The doctor said on a continuum from white to black, white being the best, we are right past the white...barely in the gray!!! He definately thinks we can still beat this disease!!!Do you know how great that was to hear? Do you know how great it is to be able to tell you?????
We go Tuesday (May 17) to get all of those staples out of Chandler's head and to see Dr. Rapkin in person. Hey, Louis, if you are reading...get ready for a big hug!!!
Hey, for that matter all of you from Aflac get ready for some big hugs!!(And Lighthouse and Camp Sunshine)
At least we know what we are doing for the next 6 months....The scary wondering and waiting is over for the time being!!
Thank you for all the prayers you have said for us! Don't stop!
In His hands,
Kim
Friday, May 6, 2005 4:30 PM CDT Quick update: We arrived in Moultrie about 4:30 Saturday. Jim Mac took Chandler for a bike ride outside and just let him run around some enjoying the gorgeous day. Then He bravely put him in the bathtub for a good washing....including his HEAD! (yikes!) Thankfully, it was totally uneventful. Chandler acted like he normally does, splashing trains around, and generally having a great time. How is it that they can cut your head open like that and him be SO normal? Gosh, I don't understand. But I'm grateful for His grace in letting it be that way. Just want to send out some extra special "thanks you's" to Kristin, Jen & Steph, JulieG.and Jenny for all you all did to make our hospital stay as good as it could possibly be. You all are so wonderful. Plus, my rocks, Kim and SabO! Thanks for listening! Kayla, for keeping Betsy and your constant support! Well, the list goes on and on. Our family is so blessed to have so many wonderful people who care about us. Words can't sum up how I feel. Also, I can't help but think of Dayna, Leigh Ann, Faith,Monique and the too many others who lost children to cancer since last Mother's Day. Today will be so difficult as I'm sure so many days are. Just wanted to acknowledge their huge losses. We are sad with you, cancer mommies. Kristin brought us t-shirts from Curesearch that say "Cancer stinks". It sure does!
Happy Mothers' Day to all of you who are out there and if you still can, go hug your chidren extra tightly and be so grateful you can. I am.
Love, Kim
Hi Prayer Warriors,
So many of you have checked in on us today. Thanks from the bottom of our hearts.
The surgery went beautifully...no surprises...no problems. Chandler is in room 123 napping now but has been eating and drinking. When the surgeon came out he said that Chandler could really go home today....hey wait a minute, Doc, we don't have morphine in our minivan! Seriously, he was awake and talking when I got my hands on him.
The railroad track (the many, many staples) does indeed go from ear to ear across the top of his head, but they didn't cut his hair, so honestly it isn't all that noticeable. He will keep the staples for about 10 days then he'll get them out. Pray for me for the next 10 days that I don't somehow goof up and hurt him on his head. I'm nervous (but glad) about taking him home on Saturday.
The surgeon came out and also said that what's in there is tumor and it was stuck like cement. He got his biopsy but nothing more and now we wait to hear from pathology. He did remark that this tumor has shrunk by more than 85 hen comparing it to his first CT (July 2003). Frankly, we always knew it was tumor. The question remains though, is it "matured" cells that are now benign? Probably not, but hope is still there. If it indeed IS malignant, then we have to start making some hard decisions. We have yet to talk to an oncologist, Dr. Rapkin is out of town so it will be another Doc, probably, Dr. George.
Right now we are just so glad that Chandler still looks like Chandler, just a bit puffier. The swelling was actually quite minimal. We are so glad that he is eating, drinking, watching TV. He even played with Thomas the Tank Engine on his bed. He's now off the morphine and on Tylenol and Advil. He does still have the IV going with fluid, but I expect them to take that out as soon as possible.
Keep praying for a miracle. God isn't through with us yet.
In His hands,
Kim
Wednesday, May 4, 2005 12:28 AM CDT Hi Prayer Warriors,
I'm so miffed at myself. I just wrote a detailed entry explaining what's ahead and somehow I lost it!! UUUUUgggghhhh!!!
A bit shorter, but here it is again! We are headed to Atlanta for a pre-op visit tomorrow. They will do a"type and cross" of his blood in preparation for Friday's surgery. I sure hope there is NO need for it, but the surgeon is ready.
Then we wait. We wait for the long-dreaded Friday surgery. I'm asking God to bless all of us with restful, peaceful sleep in anticipation. He's surely given it to me before.
Friday morning we have to be at Scottish around 6 am. They will do a quick three-dimensional CT and then whisk him off to the OR to get the skull biopsy while he's still asleep. Surgery should begin around 8 or 8:30 and be over in approximately 2 hours. Oh the wait. The wait to see him again...this time with a railroad track of staples across the top of his little head. The wait to see him smile and open his eyes so he knows we are there with him.
Then the wait for pathology results. I wish I knew how long that will be. Last time it had to be sent to the West Coast somehere and it was like a ten day wait. I'll wait as long as needed to get the negative results I'm so fervently asking to receive.
Then we wait for Chandler to act like he's feeling better. Then we wait to be released from the hospital.
I'm not complaining...it is just hard.
On a much happier note, I'm going to brag a bit. Indulge me, please. Betsy was selected from her third grade class to run for her first elected office. She's running for VP of Student Gov. Assoc. It made her little heart happy so Jim Mac and I are so proud. I sure hope she wins when the whole school votes. This is how "cut-throat" she is....when I asked who was her competion, she said she didn't know and didn't care, she was just glad she got it in her class! (ala,It's an honor just to be nominated. But I would like to thank the Academy...heehee).
I plan to update from the hospital to let you know anything as soon as we know anything.
Thanks for the prayers of a painless surgery, fast recovery, and most importantly for the pathology to show NO CANCER!
In His hands,
Kim
PS Thanks Beth for your prayers,and your love and concern for my family. The money will be in the gas tank!! :)
Wednesday, May 4, 2005 11:24 AM CDT Hi Prayer Warriors,
Headed for Atlanta tomorrow morning early to make it to Day Surgery to be blood typed and cross-matched and then to the clinic to drop off a bit 'o tinkle for them to study. Our last "deposit" was lost somewhere between Atlanta and the lab in Utah!
Then we wait. We wait for the surgery that must happen on Friday. Will we get any sleep? Lord, I'm asking for a peaceful, restful, no-worry kind of night.
Friday morning we go to surgery around 6:30, for them to take him back about 8:00 a.m. Then we wait for the surgeon to finish. Then we wait to see Chandler's little face smile at us so we know he's OK.. Then we wait for the pathology report. I wish I knew how long that would be!
Then we endure the night in the hospital. I guess Chandler will have a regular bed instead of a crib this time. He's never stayed in a bed at the hospital before...he does at home, but that's a toddler bed....very close to the ground.
Then the plan is for us to go home Saturday. Betsy will be staying with her teacher. She's so lovin' that! I sure do appreciate good friends like Kayla for keeping her.
Speaking of Betsy, I must brag a bit. She just found out yesterday that she is the nominee from her class to run for VP of the Student Government Assoc. Yippee! I know she's only a third grader, but she was happy about it so of course Jim Mac and I WERE JUST SO PROUD! Hope she can pull out a victory when the whole school votes.
Well, I don't know if I will update from Atlanta or not. Hopefully, I will and can report on how the surgery goes and anything else they will tell us.
Thanks for the prayers for benign results and painfree surgery with no complications!
In His hands,
Kim
Saturday, April 30, 2005 7:10 PM CDT Good Evening Prayer Warriors,
Change in plans everyone....
Chandler woke up at 5:00 am Thursday morning (this is unusually early for him) but I was up getting stuff in the car ready to go to Atlanta so I thought I'd just made too much noise and woke him.
WRONG! He was sick...throwing up/diarrhea sick! Uuuuugh! Jim Mac stayed home with him so I could get in one more day of work. Bless his little heart, he was so sick!
When I got home that afternoon he was still nauseated. I just called the neurosurgeon's office and asked what to do? They said they'd work on it and call me back. They called back with a very good alternate plan. Now, the plan is to go to Atlanta on Thursday, May 5 for pre-op and do both the 3D CT scan and the surgery Friday morning, May 6. This is actually preferable because it will be one sedation instead of the original two.
I just believe there is a reason that we weren't supposed to go until this coming Thursday. I have asked God so many times to lead us through this...I think that is exactly what this is all about. We are just trying to follow God's lead, bowing to His will.
Chandler was still sick on Friday so my daddy, AKA Papa, drove from Dublin to let Jim Mac and I both work. ( What would we do without our parents?) Chandler has continued to throw up today so I took him to the local doc this morning. He said the virus they've been seeing does last this long so he gave us phenergan to hopefully get Chandler out of his misery. Must've done the trick....he's not thrown up since 10:30 this morning...PTL!
So now the painful wait for surgery and the coming pathology report will be extended a bit, but that's OK...there is a reason. God already knows how this is all going to pan out. We just have more time to plead for clear, benign pathology.
Please continue to lift us up. God is still in the miracle business.
In His hands,
Kim
PS We made $450.00 at our "little lemonade stand" at school on Friday...How awesome is that? We plan to do another one on our field days to try and get $550 more for an even $1000 donation for Curesearch. Isn't that unbelieveable? Thanks to all who worked the stand all day. (Melanie, you are incredible! Thanks!)
Tuesday, April 26, 2005 3:54 PM CDT Hi Prayer Warriors,
I have started this journal entry 17 times and since I don't ever seem to get it finished, I keep starting over. Ever have days (or weeks) like that?
Any way, I'll keep this brief(so I can finish). Camp Sunshine was awesome. Loved getting to see some of the families that we read about on Caringbridge and to meet others we've not ever met before. I'm not a "campy-person" but it was worth the "camp environment" to see so many great folks. One of the most powerful things is to talk to the "teenagers" who were cancer survivors themselves. Boy, just to see them with their long gorgeous hair, their beautiful faces, looking so incredibly beautifully normal. I know I write about wanting "normal" so much....
Chandler is doing fine. He doesn't know that we are going on Friday for a CT that the surgeon will use to cut the 2"x2" square out of his skull. He just knows he can watch a lot of videos on the long drive to Atlanta. I sure do appreciate my friend Malinda for joining us that trip.
Jim Mac and I will drive up again on Sunday night(May 1) to be ready for the surgery on Monday(May 2) morning. Just keep praying that the biopsy is as painless as possible and that what they find when they get in there is nothing but DEAD, benign material....NO CANCER!!
As the day approaches, I get more and more emotional..you cancer mommies out there know what I'm talking about. But truly, I can't handle it...only God can....it is just so hard to turn it all over to Him.
I'm rambling...can't help it today.
Oh yeah, on Friday my school is hosting a fund-raiser for Pediatric Cancer Research. My Asst. Principal, Dr. Sheumaker, ordered 25 copies of Alex and the Amazing Lemonade Stand to be read by all classrooms. Isn't that awesome? That's a great way to get our message out. It is a great book, not just because it is about cancer.
Gotta run!
Keep praying!
Love,
Kim
Tuesday, April 12, 2005 8:31 PM CDT Hi Prayer Warriors,
We are home from Atlanta tonight....tired, but at least it is over! I had been dreading this trip but it had to be made. Today Jim Mac and I met face-to-face with our oncologist, Dr. Rapkin to *grill* him about what he thinks we need to do next with Chandler. Among the many scenerios that were discussed, they all began with, "Before we do anything we must make absolutely sure that this is cancer we are dealing with in his skull." Of course this makes perfect sense...thus a biopsy is on the horizon.
We met the neurosurgoen, Dr. Hudgins, today. He was not what I'd expected. My experience (however limited) has been that often times surgeons have an arrogant, " I can do anything" sort of attitude, but not this one. He was friendly and sort of humble, yet confident. When he talked to us about the biopsy of Chandler's head he was very forthright and sure of exactly what needed to be done with Chandler. Confident, I like, condescending, I don't.
He explained exactly what his plans are...pretty graphic descriptions coming...don't read if you don't want to...
He plans to cut Chandler's scalp across the top of his head, much like a face lift. (ear to ear) Then he will fold back the scalp and cut a pretty good sized hole in Chandler's skull. From this hole several biopsies will be collected. He says he will gladly remove anything he sees in there that isn't supposed to be there (Ya know, like cancer). Then he will place the square of skull back into the place from whence it came, secure it with a small plate and screw and roll his scalp back over it and stitch it back closed. This should be about a 1 1/2 to 2 hour surgery. We will spend one night in the hospital and go home the next day.....amazing, huh?
I asked about the pain Chandler will be in...he said he will feel like he took a pretty good lick on the head but we'll give him Tylenol and Advil! Tylenol and Advil????? Looks like if they open your head, you should at least get more than that! I'm hoping though, he won't need more than that.
The surgery is scheduled for Monday, May 2 at 8:00 AM (the first one of the day). Hopefully the biopsies will reveal only the benign form of neuroblastoma. If this is the case, Chandler will need no further treatment... hopefully for the rest of his life. So this is mightily important to us. All of you who pray so fervently on our behalf....I'm asking you to really "take it up a notch" (ala Emeril) and pray, pray, pray like crazy that this biopsy is NEGATIVE/ benign/ mature. The Bible tells us to keep asking....so please do. We surely are!
I will explain the further therapies later....frankly, I hope we don't need to explore those options, but I'm grateful there are some.
I found out today that a 36 year old friend of mine (one of the Prayer Warriors who "threw it on me in the beautyshop that day")has lymphoma. She is happily married with a son and a daughter who need their mom. She begins chemo on Thursday. Her name is Carolyn. I ask that you join with me to pray her through their "cancer odyssey."
Thanks for listening (reading) and for your oh so spiritual and heart-felt prayers....we need 'em!
In His hands,
Kim
P. S. Can't wait to see Catie's family, Jack's family, and Kendrie's family at Camp Sunshine this weekend! The Booth's plan to join in now that we know our "plan."
Friday, April 8, 2005 10:06 PM CDT Hi Prayer Warriors,
A quick update tonight! We have enjoyed some truly wonderful time this week with our Spring Break. My house is clean, our clothes are clean AND IRONED, and Betsy's closet is finally in some kind of order!!! What would we do without this week to get that sort of thing done???? Ordinarily we would have tried to plan a short trip, but not knowing when the doctor might call, we planned nothing. But being at home together was better than any old trip to the beach or somewhere.
The doctor DID indeed call....finally! We have an appointment next Tuesday, April 12. Funny how I have an entire week off and our first appointment in over 5 weeks is my second day back at work....the day before we administer the big CRCT (the statewide test that my 5th graders must pass in order to go to the 6th grade). Oh well, they are smart and we have prepared all year long. One day isn't going to matter very much.
Getting back to the appointment, it will be with our oncologist, Dr. Rapkin, and a neurologist (brain surgeon), Dr. Hudgins. From what I hear all of these docs in this group are pretty spectacular, especially this Dr. Hudgins. Please join me in prayer that this appointment goes well and reveals a very minimally invasive plan to collect a biopsy from Chandler's forehead. And further more, please pray that the biopsy reveals only harmless material in Chandler's head. Neuroblastoma has a *matured* or benign form that it can sometimes turn into following treatment. (It will still show up on scans even though it is harmless.) They are making sure that this spot that keeps lighting up is the regular cancerous form of neuro before treating him. It makes sense..I just wish he didn't have to endure this biopsy collection.
We are at Meme and Papa's house. My brother's baby daughter is being christened Sunday morning so we have come for the weekend.
That's about all our news for Spring Break '05!
In His hands,
Kim
Tuesday, March 29, 2005 2:39 PM CST Dear Prayer Warriors,
Thanks so much for the many guestbook entries that have been left lately. I don't say it nearly enough, but they mean so very much!
I have gotten the word from our school board that they indeed accepted the recommendation of the sick bank committee to increase the maximum number of days that can be allowed. I now have 40 more school days that I can use if necessary! God is sooooo good.
Still have not heard from Dr. Rapkin...I did hear however, that last weekend there were 8, yes, you read correctly, 8 new children diagnosed with cancer at Scottish Rite...three of which are neuroblastoma!!! Yikes!!! What's happening? Is it our environment? Ya gotta wonder! Just let's remember these new families in prayer. Now those days are one big blur as far as remembering every detail....but the feelings...I'll never forget!
Easter was terrific! Betsy and Chandler enjoyed coloring eggs, going to a huge egg hunt out in the county(see picture on "View Photos"), and of course church on Sunday morning. Chandler still doesn't have the whole "bunny-thing" down yet...he must've asked me 5 different times,"Who gave me this Thomas movie? Who gave me this Thomas track? Where did these Thomas sunglasses come from?" Next year he can anticipate the Easter bunny's arrival more.
Hoping to hear about treatment soon. Keep us covered in prayer.
In His hands,
Kim
Tuesday, March 22, 2005 7:03 PM CST Hello Prayer Warriors,
Thank you for all the prayers said on behalf of my job. Right now we are just waiting for the School Board to meet and approve the plan worked out by the Sick Bank committee. This will probably be readily approved since it is a committee decision, the superintendent has given his nod, and the sick bank can well afford the additional days.
On a different note, I have now heard via email from Dr. Rapkin regarding what is next for Chandler. After consulting with other neuroblastoma doctors around the country, the consensus is a biopsy of Chandler's head is needed. Hopefully this will be a "simple" needle biopsy (as if anything this close to Chandler's brain is simple.) Rapkin is talking to a neurosurgeon to find out what kind of procedure can be done and will be talking to me once he knows more. They are just trying to confirm that what keeps "lighting up" on these nuclear medicine scans is indeed active disease. (There is a benign form of neuroblastoma.) Hopefully, this will be a relatively easy surgery and maybe just maybe it might NOT be cancer in there. Wouldn't that be a huge blessing? You might have to scrape me off the ceiling, if that is the case.
Of course if it is cancer then at least we are sure about it and will begin the process toward wiping it away from Chandler's body totally. This process will involve another stem cell collection...ick. I will tell more, in detail, once I talk to Rapkin later in the week. The short version is: 1) collect stem cells, 2)chemo again, 3)big dose of systemic radiation, 4)give some cells back, 5)give another big dose of radiation, and 6)give more cells back. Rescan and have the first clear scan since all this started 2 years ago.
I said when Dr. Rapkin first told us about this treatment that if it is right, then God will open doors and we will have peace that we are doing His will with it. And similarly, if it isn't right, then doors will slam shut all around and we will again be assured that it isn't right and we will have peace about it that way too. I really, really was quite sure that this was right....now I'm having many doubts. I don't know if the doubts are from God or from somewhere else. I am hoping that once Dr. Rapkin and I talk God will again bless me with that peace that I seem to have lost.
Thank you for the many, many prayers that are said daily for our family. Chandler is beautifully fine...I'm the one falling apart with worry. He continues to grow (it is great to need new clothes) and seem so great, you would NEVER know he has ever been sick a day in his life to see him. He continues to love Thomas the Train and any book read to him! He told me he was *reading* to himself tonight. How great is that?
So many friends have supported us. Many of you are only connected to us via the computer, but your prayers are so wonderful. If you have a chance, please sign the guestbook and remind me you are out there. (I check on folks all the time and don't sign too, I know it is hard sometimes) I just need a lift, if you have a chance.
In His hands,
Kim
Tuesday, March 15, 2005 8:21 PM CST Update to the update (Ha Ha)
Great news! The sick leave committee has increased the maximum that folks can take....not just me....all members! If the board approves, then I'm fine for this year. Thanks so much for praying. Will give a full account of the meeting when I have more time to write. Just wanted everyone to know that it sure looks good on the job front. Now, I hope to be hearing from Dr. Rapkin pretty soon.
UPDATE: PLEASE DO NOT CONTACT MY SUPERINTENDENT REGARDING OUR SITUATION. I KNOW MANY OF YOU ARE WELL MEANING...AND I VERY, VERY MUCH APPRECIATE YOUR SWEET INCLINATION TO TRY TO HELP. HOWEVER, IT MIGHT WORK IN JUST THE OPPOSITE WAY. I JUST ASK THAT YOU PRAY THAT WE CAN WORK SOMETHING OUT WITHIN THE CONFINES OF OUR SYSTEM. PLEASE DO PRAY AND I WILL REPORT AS SOON AS I KNOW ANYTHING.
Good Evening Prayer Warriors,
I know I haven't updated in a while, but honestly I was waiting to hear something from Dr. Rapkin before I detailed the treatment that Chandler is likely to begin. I still have not heard anything, but I do know that he is having to speak to an awful lot of people on Chandler's behalf.....very smart and busy people. I knew that it is likely to take "some doing" before we would be told when it would all start. In a few words, I'm neither surprised nor worried.
However, what I am worried about is my work. Tomorrow (Wednesday) at 3:45 I will be attending a meeting with the governing board of Colquitt County School System's Sick Bank. Last year I used the maximum number of sick days that I had accrued and the maximum number from the sick bank. With these two plus the days I was able to finish the year with, I only was "docked" for about 12f my pay. This was awesome as we depennd on my income HEAVILY and I carry our only insurance. Because this is my son and not me I was not able to use my short or long term disability, that I have paid for for 16 years.
Now, the problem. I have no more days (maybe one or two) and am not allowed to draw from the sick bank for two more years! We may not have two more years! This treatment needs to be done sooner than later....so waiting is not an option.
I am going to *plead my unique case* and hope they will see that I am not trying to abuse the bank nor have I wasted the generous amount of days they have already allowed me to use. I must make them understand how many days we spent in a hospital in Atlanta last year and how many days we will be away for this upcoming treatment. I want them to understand that I have been a good and faithful employee to this county's school system for 16 years and will more than likely finish the rest of my career right here. They will get their time back from me.
In the scheme of things, this is small, but I do not want to have this worry added on to what's going on with Chandler. Pray that my words will be heard in the way they are meant. I am at their mercy. As my principal said today, Pray for God's favor" in this matter. All of you who read our site are faithful to pray for us and I sincerely thank you. Join me in asking for God's continued favor in this matter.
In His hands,
Kim
PS Chandler is doing GREAT...never better! Don't ya just love that new picture on the opening page? Thanks Misti!
Saturday, March 5, 2005 2:46 AM CST Hi Fellow Prayer Warriors,
It is official....NO CANCER in Chandler's lungs. Could you hear that whistle being blown? Hee Hee It is a wonderful thing to hear those words!!
I am really not as excited because it really wasn't very surprising to me to hear those words at all. To sorta back track, about a month ago it was time for "routine scans." This scan and check up was also coinciding with the follow -up to Chandler's hearing test. When the audiologist initially told us that Chandler's audiogram and "hearing booth" test indicated that he needed aids, I tried not to be devastated. I kept reminding myself that hearing aids were not sooo bad but I just sorta was thinking "Man, this too? Can't you cut us some slack, God?" For all the time in between, I constantly was doing my own hearing evaluations. And "my results"(however UNscientific) continued to yield the same outcome--he could hear. His speech was just too darn clear and he responded to me in every little testing situation that I threw at him so by the time for this last hearing test at Scottish, I was so glad when they finally came to the same conclusion that I'd already come to, that the child's hearing was fine.
Daddy and I celebrated that night with Uncle Steve and Aunt Greta (a recent cancer survivor herself) at Joe's Crab Shack! WoooooHoooooo! But then the next day came..and his "routine" CT was performed. We did it and went straight over to the clinic to hear the news....which was that "something" had showed up on his lungs that had NEVER been there before. All Dr. George could do was hang his head and say"relapsed disease." For those not intimately versed in "neuroblastomaese" that translates "death, we just don't know exactly when...we'll give ya some more damn chemo that will only delay the inevitable." I was devastated.
Also, let me say, anyone that knows me will back me up on this, but I have never kidded myself or been in denial about any of this cancer-stuff. Sure I've cried and mourned but go through it with blinders on? Never. My mind and heart can't deal like that. So when I tell you that I was devastated, I mean, I always knew that relapse is a possibility....just I wasn't expecting it now. I thought it would be at least another year away, if it ever came at all, which I surely hoped it would NOT.
So we went home that Friday afternoon with unbearably heavy hearts to return the next week to have more follow-up with different tests to confirm what they thought. Well, ya'll, test after test started coming back with good results! Good MIBG, good blood, good urine, and clean bone marrow! By the time we were going back for yesterday's test, I really wasn't too terribly afraid. Let me say this, I slept more the nights leading up to it than any other scan we've ever had performed. (Which even some is better than none at all, right?) Honestly, on Friday morning, upon my first awakening, I was excited! Yes, you read that correctly, I was excited, because I was glad to be finally getting this repeat scan overwith so that little bit of nagging in that little place in my head would STOP! So, that's why I began this entry with the "not being too terribly surprised" attitude. And to be frank, I don't think Dr. Rapkin was very surprised either...just affirmed.
Now, I know this is getting lengthy, if you need to take a "potty-break" before I begin Part II, please do so! Hee-Hee.
Here's the Part II:
Rapkin was so glad to be able to tell me good news, but here goes that proverbial "other shoe dropping" sound. Now that Chandler is NOT in "relapse-mode" as they'd thought, Dr. Rapkin could talk to me about something else that he'd planned to offer when all this relapse business started. For those who know our story well, this isn't news. But there are others who aren't aware. Chandler Booth has never, never, ever had a clear scan. At diagnosis, all of Chandler's scans were awful...wretched....just covered up in disease....it was everywhere, but as treatment was introduced...it got better and better, which in "neuroblastomaese" that is GOOD!!!!! I mean very good. But even through, all the chemo, radiation, and Cis-retinoic acid we have never been totally clear. There has always been this persistent spot on Chandler's skull(not brain) that has lit up on every scan....now it has shrunk considerably, but its intensity has always been very BRIGHT. Rapkin has celebrated with us at every opportunity but he has always told me that the fact that it is stable is good, but the fact that its intensity is "white hot" is NOT good and he feels that it will eventually be the source of Chandler's relapse.
Dr. Rapkin has offered Jim Mac and I an idea. His idea is to do one more therapy (different than what we've already received) to finally get us to that status we've NOT reached as of yet...clear scan status. It won't be easy, but what choice do we have? Wait for this damn disease to come roaring back to weaken and finally take our sweet Chandler from us? Hell No!!! Do you hear that loud and clear???? H-E-L-L N-O, Cancer!
I will detail more about what this might be at another entry. This is already way too long. Just suffice it to say that Jim Mac, Betsy and I had a family meeting with Chandler jumping on the bed for most of it and agreed that we will allow Dr. Rapkin to talk to his colleagues around the country (which he's already done many other times) to see if this new idea can be done. He wants to go ahead soon, if we are going to do it....to beat the cancer before it tries to come back full force. You sneek up on it, while it is "resting". We have left all of this up to Our mighty Father in heaven. If it is supposed to happen, doors will open, and our paths will be straight and clear. If it is not supposed to happen, and God has NOT ordained this, then doors will close all around and we won't do it. I am trusting God fully in this new wrinkle. God has been so very faithful all through this. He's not about to leave us now and I know that. The next few months will be hard emotionally, financially, spiritually, etc. But hey, we've got God with us, who can be against us?
Amen!
In God's perfect hands,
Kim
PS Jack got good news on his MRI!! Way to live the cure, Camp Jack!! We are sooo glad for you!!
Wednesday, March 2, 2005 2:58 PM CST Dear Prayer Warriors,
Please remember us in your prayers. We will leave for Atlanta after work on Thursday(March 3) to be at the hospital, drinking contrast for his CT scan by 8:00 on Friday morning, the 4th.
We drink the contrast for approximately two hours then he will be scanned around 10:00/10:30.
We will then go across the street to the clinic and see Dr. Rapkin to let him tell us about the scan. It is our sincere and specific prayer that NOTHING will show on this scan.
As I understand things, as long as his lungs do not appear to be any worse, they will wait to act. If however, his lungs show any more activity....another spot...something looks bigger, etc. then an operation to remove his upper lobe of one of his lungs will have to be performed to see what's in there. Of course we do NOT want this at all costs!
We still have several good things in our corner...
good MIBG scan
good urinalysis numbers (our best yet)
good bone marrow (clean as a whistle)
good blood work
We also have God who can make this good scan happen. His word tells us to be anxious for nothing, but in everything, with prayer and petition, along with thanksgiving, make your requests known to God. So let God hear from you, please, on our behalf.
I do have one more very specific request. Please pray for Jack. They are going through a similar situation to us...doing all sorts of scans...looking....looking for what is the cause of his limp.Please pray for NO CANCER! His web site is www.caringbridge.org/ga/campjack, if you want to read and or leave them an uplifting message.
In His hands,
Kim
P.S> I will update as soon as I possibly can about results!!
Friday, February 25, 2005 1:56 PM CST Hi Prayer Warriors,
Just a VERY quick update today. I was afraid those of you who check on us daily were getting sick of looking at the whistle and rainbow stories....
The circus was a last minute thing. And as you know, sometimes its those last minute things that turn out to be some of your best times. Let me explain, I was talking to Jack's mom and she asked if we were coming to the circus. Heck, I didn't know anything about a circus coming ...but Jim Mac and I talked and decided on Thursday to go up on Saturday afternoon to see a Sunday performance being done exclusively for cancer kids. Kristin Connor had planned to have dinner with 2 other cancer families on Saturday evening....so we just planned to join right on for the party that evening and then we'd all go to the circus on Sunday.
Everything was going pretty well. We packed and loaded up to arrive at Kristin's about 6pm. We are happily riding along I-75N when we hear "bleaeaeahhhhh" coming from Chandler's carseat. Yep, he had vomited all over himself. We were a bit more than 2 hours from home and a bit less than 2 hours from Kristin's....what to do? One of the children we were to be joining was still on treatment. We absolutely could NOT expose her! We decided to turn back south and go to Me-me and Papa's house in Dublin. Betsy and Chandler were both crying because we were not going to the circus. Before we arrived at Me-me's the diarrhea started. This was one time I was GLAD Chandler is still wearing diapers!!! Because PU! I'll skip the parts about stopping at the Cracker Barrel to wash out everything we'd brought for Chandler to wear and stopping to buy towels to wrap around him because everything was messed up. Anyone who has travelled with a sick child knows what I'm talking about!!!
We safely arrived at Meme and Papa's house. We fumigated the car interior with Lysol, washed the carseat, washed ALL of Chandler's clothes, got up the next morning and went right on to the circus!
It was great! We got to see the other families that we'd missed the night before. We also saw a couple of kids we'd not seen in a very LONG time! (Julie, I was ticked to see you and Brian with all that Hair!) It was all in all a pretty terrific day . I'm so glad we went!
Scans are again around the corner....Friday, March 4. This is a follow up to the last CT that got the docs all worried last time. Pray that this time it is all cleaned up and we can get back to our normal routine of scanning every 3 months.
Camp Jack, www.caringbridge.org/ga/campjack is having some scans done. Please pray and check in on them, if you have a chance...
In His hands,
Kim
Thursday, February 17, 2005 2:17 PM CST Hello Prayer Warriors,
I love to read the guestbook! I think my favorite entry lately was the one where someone remarked that my story about "prayin' in the beautyshop" has the making of a country song. Hee Hee
I said I would write about the whistle and the promise....so here goes!
On the Tuesday we were to find out about Chandler's bone marrow test, I was just about a wreck emotionally. I really was relatively OK in the morning, but as the day wore on....my nerves were more and more on edge. I was too afraid to go home to my own house for fear that they'd left a message on my answering machine with news. I wanted to know....but sometimes ignorance is bliss. This news was possibly going to literally change our entire lives!!!!
I decided to drive home with Betsy and NOT go get Chandler from the sitter. In case there was news and it was bad, I just didn't want to fall apart in front of Chandler. Betsy and I went home....no message of any sort on the machine. Whew! Betsy changed into her gym suit and we drove to the YMCA for gym practice. I'm driving her there with tears in my eyes....my mind wondering what did it mean that there was no news (was this a good sign or a bad one?)....wondering how we were going to take it if the news was bad, etc. All of a sudden, from the backseat, Betsy shouts, "Hey mom, look, there's a rainbow!" Now, a rainbow is always a pretty sight, but on this particular day that had been beautiful and clear as a bell, that rainbow was for ME....KIM BOOTH. It was a visible reminder that He was still in control. His promise that He would be with me was right up in that clear blue sky. You just can't make this stuff up...it was right there! God does bless us all the time, doesn't He? I
Now for the explanation of the whistle. Well, for as long as I've had this online journal, my friend and prayer warrior Theresa has been such an encourager. She would cry with me, laugh with me, listen when I needed to get something "out", etc. Each time Chandler would be about to undergo a bone marrow aspiration, her guestbook entry would be something like, "praying for squeaky clean marrow or clean as a whistle marrow." Well, when she got the word last Wednesday that Chandler's marrow was cancer-free she sent me a bag of "treats" from her store and among them was a real whistle tied with a golden ribbon and a card that read, "Praise God for clean as a whistle marrow." I happened to be on the playground when I got the whistle and I blew it and blew it!!!! I wore it around my neck for several days as a visual reminder to me and to others of God's power over this wretched disease.
I won't ever blow a whistle or see a rainbow quite the same way again. Just a couple of the MANY ways that my life has changed....for the better.
Thanks to all of you who listen to me rattle on and on about our struggles. Thanks Sabrina and Kim for putting up with me over and over. You are irreplacable! Thanks to Kirsten and Kari and to all of the other Hamilton's Hounds for the love offering you gave to Chandler's fund. Thanks also to the anonymous donor who deposited money in his account last week. You are just awesome! We humbly accept it with a very grateful spirit. Thanks for the MANY, MANY prayers that have been said for Chandler daily....but especially for the ones during the last couple of weeks. We have really needed 'em.
I'm sure I forgot to thank someone...once you begin naming names....you get yourself in trouble. Just know that it all helps and is always appreciated.
Next entry...the CIRCUS !
In His hands,
Kim
Thursday, February 10, 2005 9:30 PM CST Good Evening Prayer Warriors,
In case you have not already heard...Chandler's tee-tee was great and better, still his bone marrow was found to be "clean as a whistle."
Let me try to recap the last couple of weeks...
Thursday- sedated hearing test--great news...NO hearing aids are needed. Hearing is normal! PTL!
Next day, Friday, "routine" CT to just check him out--BAD news...spots on lungs.
Go home for weekend and return the next Tuesday to get nuclear medicine injection.
Wednesday--MIBG scan...looking for cancer to light up in his lungs to confirm the previous CT--GREAT scan! No cancer to be seen in lungs! Wooo Hooo! Dr. still Not satisfied. Requires bone marrow sample to be drawn out of Chandler's back on Friday.
Go home for weekend again. This time to wait until Tuesday for test results. Results don't come until Wednesday at 1:25....BUT they are definately what we'd prayed for!! NO cancer present!
I know all of that is so choppy...but I'm trying not to take forever to recap. Now, let me share a bit of what happened in between all of that driving to and from Atlanta.
I was scared, I mean really scared when Dr. George came in to tell us that the "routine" CT was anything BUT routine! He had me completely convinced that Chandler had relapsed (and if you know anything about our cancer...relapse is NOT a good thing, if you get my drift.) I had already begun feeling very defeated and very sorry that we'd not "done More" while Chandler was free of central lines, IV poles, medicine that made him so photo-sensitive that I hated for him to get out of the house, etc., etc.
Well, when the next scan (MIBG) was so good, I really got my positive attitude back. I just couldn't understand why in the world these doctors were being so pessimistic! No one could deny that Chandler looked like a million bucks...he did NOT look sick at all! Why couldn't they see that? Well, they insisted he needed a bone marrow aspiriation. Frankly, I was not happy Chandler had to endure this painful, barbaric procedure, but, it wasn't a scan. It is a biopsy that they can look at under a microscope. This was going to prove to them once and for all, that Chandler was OK.
I was home (in Moultrie) for one day in between The MIBG and the bone marrow aspirate. On this day I desperately needed to get my mop(my hair) trimmed. I had not managed to wear a stitch of make-up during all this ordeal...the least I could do was get the hair from being so flat to my head....so I called at the VERY last minute to see if Sherry could "work a little scissor-magic." Bless her heart, she'd obviously already packed up to go home, but she agreed to take me. Not even knowing all that had taken place in the last couple of days. (She knows about Chandler...just not this most recent situation.) So while in the chair she begins to tell me that "tomorrow at 11:30 we will be praying for you." (That was the time that the aspirate was to be performed.) By the time she finished with my hair and I had told her about what had been happening in the last week or so , she said....yeah, we'll pray tomorrow...but WE are going to go pray NOW....RIGHT NOW! That sweet precious hairdresser grabbed 3 other MAJOR prayer warriors from their customers and said, "we'll be back in a few minutes." Well what happened next is really a blur of tears, snot and some kinda praying. Those women fully surrounded me in a back room of that beautyshop and spoke to God on behalf of me and my family. It was surreal and DEEPLY moving. Spiritual and powerful! I can't explain it all...but I KNOw beyond a shadow of a doubt that God was there in that backroom. Now, I believe God is with us all, all the time. BUt this was different. I was still scared about what was to come, but I had a peace that I'd not had prior to this prayer. I thank those beautiful women and their customers who let them come back there. Man, God just rocks!
I pray that everyone who reads this post will also feel that comfort, that peace , that security. Particularly, all the "cancer mommies" who read this site (as I also read theirs). I hope that everyone has the opportunity to "experience God" the way I did in a little back room with some prayin' women! It was an awsome experience!
More next time on the promise I received and the whistle!
In His hands,
Kim
Wednesday, February 9, 2005 12:25 AM CST Oh you wonderful warriors for Christ,
I just got the great news that there is NO cancer in Chandler's bone marrow!!!! The urine numbers have also come back from Utah and they are also improved!!!!
Yes, Lord Jesus, yes, you read this update correctly!
I am beyond words to explain my excitement and gratitude!! Thank you to you who have prayed on our behalf and most of all to God for his wonderful grace in giving us this news!
In His hands,
Kim
Wednesday, February 2, 2005 6:37 PM CST UPDATE:
We have no news and the waiting is excruciating. It is now 6p.m. on Tuesday. No message on machine...nothing. Please keep praying for clean marrow and good tee-tee numbers. Will update as soon as we know something.
Good Evening all of you faithful, faithful, mighty Prayer Warriors,
I have just had the pleasure of reading all the guestbook entries that have been left by so many of you while we travelled to Atlanta. I want to thank you from the bottom of our hearts, but not to be greedy.....DON'T STOP!!!
Let me try to explain. Yes, we had a "dark" scan today and for that, we are soooooooo grateful to God...because we know He is responsible! After crying tears of joy and taking many DEEP breaths and lots of big exhales( I don't feel like I've really been able to take a real breath since Friday's news) and telling everyone we saw that we'd just gotten this terrific scan, the other shoe dropped.
We had an appointment with Drs. Crosswell and Rapkin following the MIBG scan today, presumably to discuss treatment options, line placement, etc. But since we'd just gotten a scan that says there is no cancer in his lungs and the spot on Chandler's head was for the third time "Stable" I thought this is just a courtesy call of sorts. In my mind we really did not need to be there. But they had a different mind, hence, the other shoe dropping.
They are now concerned that the cancer has somehow mutated and is not getting picked up by the MIBG scan. Now, what I don't understand is, if they were ready to believe it if it said there WAS cancer, why can't they similarly believe it if it says ther is NO cancer? Oncology Docs? Who can figure? I know they just do not want to let anything slip by them. They are sooooo careful. They are worried about the spot on Chandler's head that has "lit up" on every single scan he's ever had. AND as I said before, it has remained, as Rapkin put it, "remarkably stable" for at least 6 months!!!
So, here is my plea to you, the faithful, wonderful prayer warriors. They need to take a look at Chandler's bone marrow. This involves "deep sedation" and two BIG needles in his back to punch through to the middle of his hip bone to suck out a sample of marrow. Sounds barbaric and it is, but it is necessary. If indeed his marrow is cancer free then that is one more piece of the puzzle that says he is NOT in relapse (quite a big piece, I might add).This result will be returned on Monday or Tuesday of next week.
They also have sent off a sample of "tee-tee" to the tee-tee testing place and will be getting that result late next week. Please pray that those levels come back lower than last time. That will be a second piece of the NO relapse puzzle.
And now, what is that in his lungs if it is NOT cancer? They can't tell short of a biopsy. So, they are giving Chandler 2 more weeks on Augmentin to see if it disappears on a CT rescan. That is VERY preferable to a lung biopsy!!
McKenzie Fleming had one of those and even though it turned out, so wonderful(no cancer) it was very painful and an incision that just about cut her in half! YIKES!!
So, the cancer odyssey never seems to end, does it? Last week I had one day to celebrate that he did not need hearing aids when we got the "bad CT news". Now today we had approximately 2 hours to savor the fabulous news of a "no cancer in lungs" scan until they let the air out of our balloons that they just don't know what to make of the MIBG scan.
The ride home with Papa was so conflicted...one minute I would be so tired I couldn't hold my eyes open, the next minute my mind would be racing back to the events of the day, the next minute I would be thanking God again for the wonderful news of no cancer in lungs, then it would go to what will we do if they are right and the MIBG scan is no longer a good scan for Chandler? So many thoughts. My faith that God's will will be done has never waivered. My pleas to Him to save my son are too numerous to even count. I still am thanking Him for giving Chandler to us and for what cancer has taught my family...I wish we weren't so tough to teach, though!
My brother ,Chip, at the beginning of this told me that his prayer is that Chandler give his testimony about what he's gone through and with it, bring others to know God. That really is my prayer too, but I add on that I hope that our whole family is a witness to God's ultimate healing power. That the worse the outlook, the bigger the miracle it will be when God heals Chandler. I'm not sure that I'm making sense, I am so tired.Please try to read between the lines to understand
I want to thank all of you who are faithful to check on us, to Papa for going with us and buying all our meals and gas and to my friend, Kristen who shared our joy today. She brought me a pillow that says, "Angels don't worry, They believe." How true! I believe in God's power over this wretched disease.
Remember...Friday, February 4 bone marrow aspirate in Atlanta at 11:00 a.m. Please join us in praying for "Clean as a whistle" marrow and NO ouchies for Chandler!!!!I'll update upon our return as to how Chandler did but I most likely will have no more test results...that will come later.
I think after the last few days, my van can find Scottish Rite by itself.
In His hands,
Kim
UPDATE:
The trip on Friday went as smoothly as it possibly could have. Terry took a sample of marrow from both hips. Chandler went right to "sleep" and woke up exactly as they wanted. He was in good spirits and was hungry. All we know is that the sample is in the lab and we should know something most likely on Tuesday. The urinalysis is still pending as well. The results come from a lab in Utah and it takes a while. I will update as soon as I know ANYTHING AT ALL, but for now, we pray for clean marrow and good tee-tee numbers.
Thanks for joining us in prayer!!
Saturday, January 29, 2005 7:59 AM CST Quick Update:
We go to Atlanta to be injected with nuclear medicine on Tuesday and will be scanned at 9:00AM on Wednesday morning. Results are pretty quick...we will know something probably around noon on Wednesday. PLEASE, PLEASE pray that the scan stays DARK!!
Love, Kim
Good Morning Prayer Warriors,
In case you did not read the last post, Thursday's test revealed no hearing loss. Not just that it wasn't bad enough for aides....NO LOSS. This test is totally objective and he has an ear infection in both ears and it still said his hearing is fine.
Now for Friday's CT results. They were not so positive. They showed 4-6 new spots on his lungs. The CT is just a picture...they can not be sure that it is cancer by just looking. So normally a biopsy would have to be done in order to diagnose...(like McKenzie Fleming had to endure) but we have the MIBG scan that lights up if neuroblastoma. So, next is a MIBG scan next week. If the places do "light up" then we are sure its neuro. If, by chance, it doesn't...then it might be a lung biopsy or just a waiting game to see if it is some sort of infection that goes away.
The fact that Chandler has never had neuroblastoma in his lungs before does not bode well.
Jim Mac and I now have to plan our future. Right now, if it is neuroblastoma, then the first line of defense is to give Chandler (and us) more time. More time to play with Thomas the Train and read books and sing the ABC Song that is always followed by "You better watch out, you better not cry, etc." More time to maybe go see Mickey in Orlando.... just more time that isn't in a damn hospital!!!!!!! I think anyone can understand what I mean.
Dr. George told us that if it is indeed neuroblastoma, then he will need to take a combination of 2 chemo drugs that aren't too terribly awful. Again , I know you understand, this is all relative to the hell Chandler has already endured. This won't cure him, just more time. Jim Mac and I have talked that as long as it isn't too bad on him, we are willing to try. Two and a half is just too soon to let him be with Jesus. I'm really talking to Him about this. I hope He isn't in too much of a hurry!
Best case scenerio...the spots do not show up on the MIBG scan next week. The spots are not cancer and we go on like we've been doing, rescanning every 3 months.
Second best case scenerio...Chandler gets a port, not a central line again and the chemo doesn't make him so sick that he wishes he was dead. We get to do a lot more things as a family. They come up with some other "miracle breakthrough" while he's still alive and it works. I'm not holding my breath for that unless we pump some money to the scientists for research.
Of course, "more time" is also relative and the docs can't guarantee anything with this damned disease, but "more time" could really be years. We have hope in that.
I just don't want "more time" to just be more time to be sick, ya know? My trusted friend at Egg, Mama Duck, who is certainly a straight-shooter, advised us to "go for the chemo". She has seen kids take this combo and according to her, they keep playing, and eating, and everything, they just do it with a bald head.
So, that's where things stand. Betsy went to her GA lock-in at church last night, so we will talk to her this morning. Please, I know you will, keep praying that this is not cancer and we do indeed get to go on without the chemo.
So in His hands today,
Kim
Thursday, January 27, 2005 1:21 PM CST Hello Prayer Warriors,
Drumroll please...No Hearing Aids! WooooHooooo! I wrote a more lengthy description and somehow it got erased before it posted...dang computers!!
Anyway, that's the biggie for today and please burn up the prayerlines to heaven for tomorrow's CT!!!
Papa's waiting, so I must go.
Catie is being scanned as we speak...lift some for them too!!
In His hands,
Kim
Friday, January 21, 2005 2:45 PM CST Hello Prayer Warriors,
So glad you decided to check in on us. Chandler is doing so well as far as we can tell, but next week we will get some medical info. on him. Next Thursday and Friday are two tests (Jan.27-28). Chandler will be sedated for a hearing test which as I understand, will check to see if his auditory nerve is stimulating his brainstem. This test will either confirm or deny his need for hearing aids. Of course, we hope that he doesn't need them, but as Dr. Rapkin told me a long time ago, "If you get out of all this with just hearing aids, you have WON!"
The other test will be a CT. It will look at all the places that used to have disease and the place where disease is still present (his skull.) We will not be doing the MIBG this time, simply because we had one 3 months ago and Dr. Rapkin says that sometimes you can get a little too much information. The MIBG is such new technology that they do not always know what the results mean, whereas with the CT, they can get "measurable" data. Frankly, nothing would make me happier than if there was nothing to measure! Alas, that is not what has happened thus far. I keep hanging onto the fact that we do know about other neuro kids who have never gotten a clean scan but also have never required additional treatment...I mean for like 8 or 9 years!!! Eight or nine years sounds pretty good right now, but 88 or 99 sounds a whole lot better!!
My mother, referred to as "MeMe" by my chidren, will be having a torn miniscus (sp?) repaired in her knee on the Tuesday before. The surgery will be done by our hero, Dr. Keating, in Atlanta. He's our hero because he put her back together after her wreck 6 years ago. He truly saved her life, along with some divine intervention from heaven. Little did I know when I was pleading with God to save her how much I'd be needing her in the next few years. Isn't it so cool to look back and see God's plan unfold? I am so looking forward to one day looking back on this awful, awful time of cancer-fighting and seeing how God worked it all out for the best.
I also pray for so many others who are in the fights for their lives that they too will be able to see the blessings from their cancer odyssey. I pray that God will deliver those parents who have lost their children. I ask that He relieve their pain of their losses. I pray for all the siblings of these children, because no matter how hard you try, they absolutely get shafted sometimes.
Enough rambling. Just think about us next week. I think we will be with Papa only, as Meme will be home nursing her newly repaired knee. I may not update until we have some results from the tests, but I ask that you still lift us up. Thank you, angels!
In His hands,
Kim
Tuesday, January 11, 2005 7:09 AM CST Good Morning Prayer Partners,
I have been such a poor updater lately, it is a wonder that anyone even bothers to check up on us!
It is a good thing, though. Being too busy to sit down at the computer to type. If you could watch me type, you might understand the painful experience it is for me. Grass grows faster.
Christmas and New Year were both great. Chandler and Betsy ,must've been very good this year. The problem comes in finding a place to put it all! Yikes! But it is fun and we were just so very grateful to be home this year. My mind must've gone back to Christmas 2003 a thousand times. There were so many reminders....everytime I would say something like, "We did that last Christmas...." I would remember that it really wasn't last year but rather the year BEFORE. Last Christmas was blessed nonetheless because we still had Chandler and he'd made it through one transplant.
Right now Chandler is suffering with normal cold/sinus/cough yukky stuff. It began with a 101.5 fever that put me in a tailspin,as you can imagine. Butthat is all over with now. I know he is due to get all the normal stuff from the other kids at Miss Pat's daycare as he (Thank God) didn't really get any of that sort of stuff all last year because he was so isolated either at home or in those filtered rooms at the hospital. It still is scary when any sort of fever rears its ugly head.
We are due to go to Atlanta on January 27 &28 for the sedated Auditory Brainstem Response (Hearing) Test to see if Chandler needs hearing aids and for the next 3 month CT scan. Please join with us in prayer that these tests reveal that he does NOT need the aids and more importantly, that the scan is either as good as last time or that it is even better. Also, I ask that you remember Jim Mac and me too. Sleep is getting harder and harder to get....as the time for scans draws closer. At nighttime it is the hardest.
Thanks for all of you who are so faithful to keep us lifted up.
In His hands,
Kim
P.S. Curesearch, the pediatric cancer center is selling bracelets....won't you get one to support us?? Thanks!
Monday, January 3, 2005 2:48 PM CST Hi Prayer Partners,
Sorry for the delay in updating....it is for a good reason, though. We have just been too busy being normal...Santa visited, going to Meme and Papa's house, playing with new trains, reading new books...you get the picture. There has just been so little time to sit at the computer!
We did go to Atlanta on Dec. 23 to have a hearing test performed (there was a cancellation so they squeezed us in) but it wasn't done afterall. When we got there Chandler had some fluid in his ear so the test could not be done. EEEEeeek! Oh well, we all four got some "together time" in the car. It was frustrating, but no one is to blame.
I'm back at school ready for 2005. I will update more soon. There is more to say, I just don't have the time to do it today.
Thanks to everybody for remembering us in your daily prayers. Chandler's normalcy continues to amaze us!
In His hands,
Kim
Monday, December 13, 2004 9:27 AM CST Hello Prayer Partners,
In case you have been wondering about the results of the hearing test from last Wednesday....we did not go afterall. On Monday afternoon, after updating, Chandler started running a temperature. We went to our local doctor who concluded that Chandler's ear was infected (nothing to do with cancer....just a regular ear infection). Because of this Chandler was not able to have the test performed. Hence, we did not go. The next available time is January 27, which is when we are scheduled for our next CT scan, so we will be able to make one trip and get both done at one shot!!! Hoorah!!
I hate to have this hanging over our heads, but I'm rather glad to get both tests done at the same time. With gas prices being what they are one less trip is great! I just hope this doesn't negatively impact Chandler's speech delaying him getting aids....if he even needs them. Again, I can't tell he even needs them!
Chandler continues to seem so very normal. Folks who see him continue to not believe anything is wrong with him...sometimes it is hard to believe myself, and then other times, I can't get it out of my mind!!!
We had a lovely visit with my best friend and her family on Friday night....in their new house they have a play room set up with a train table AND a train around a Christmas tree. I nearly had to drag him away when it was time to go home. Good thing a train table is on Chandler's Christmas list this year!
Thanks for checking in on us and more importantly, for keeping us in your personal talks with the great healer upstairs! This extended time of "normalcy" only makes us want much, much more!!
In His hands,
Kim
Monday, December 6, 2004 2:09 PM CST Hi Friends and supporters,
I have to make this short as I have a zillion things that I should be doing besides reading about all our cancer buddies and updating our web site, but I know many of you who check on us so faithfully are ready to read something else from us.
First and foremost, remember us Wednesday, Dec. 8 as this is the day of Chandler's sedated hearing test. They will sedate him and put electrodes on him to see if his auditory nerve is stimulating his brainstem....Isn't modern medicine amazing? This will either confirm or deny Chandler's need for hearing aids. Hopefully, it will prove the first test wrong and prove definitively that he hears. If however, he does need them, then we are just going to get the best ones we can to make sure he hears as he should. Dr. Rapkin told me a long time ago that "if he gets through all this with a couple of hearing aids, then count my many blessings." I know he is right...it is still hard, though.
We went to Atlanta for the day ,yesterday on Sunday Dec. 5, for the Lighthouse Family Retreat Christmas Party. It was just like everything else associated with the Lighthouse.....awesome! I really want my Sunday school class to possibly get involved with this ministry. But I digress.... getting back to the party, so many families were there! I was great to see the volunteers who came. It was well worth the "fanny fatigue" from riding that much in one day. I was especially glad to see folks that we've not seen in over six months or even some for over a year! I got to see the Rivers family, Catie's mom and Aunt, and I was soooo glad to FINALLY talk with Will Hennessey's mom (He is the boy with Ewing's Sarcoma who was such good friends with Carter Martin). I also got a picture of Andy Nichol, Brandon Conner, and Chandler together, putting together a puzzle....I don't think I ever got them to all look at the camera at the same time...they all three have had neuroblastoma! We are the only one of the three without a clear scan, though. Yuck!
It was just a super day for our family, but it is a grim reminder of how many kids are stricken with this awful, awful disease. Kids who otherwise seem so very normal, but they have to fight for their very lives!!!!
Betsy got reaquainted with TuTu's daughter, Caroline and they had a blast on the stage, singing all the Lighthouse songs together. They are certainly devoted to our cause and we really appreciate their dedication. Its those awesome volunteers who make it so special.
Please keep praying for all the children out there and for those parents who will have their first Christmas without their children this year.....especially The Martin's and The Prescott's. Also, there is a little girl at Scottish right now who NEEDS a miracle...her name is Hayley....web site is www.caringbridge.org/ga/hayley
In His hands,
Kim
Thursday, November 18, 2004 2:37 PM CST Hello Prayer Partners,
Hope everyone has a blessed Thanksgiving surrounded with family and/or friends! We plan to! As every year, we have so much to be thankful for. This time last year we were headed to transplant. The unknown is so frightening, and that certainly was the case with a looming bone marrow transplant. This Thanksgiving, unlike last year, we have enough white cells to be around others and not be terrified of contracting something that might delay Chandler's transplant. It is all so different this year. Sure, we still have cancer (we assume)but we still have Chandler!
Next month, December 8, Chandler and I will again travel to Scottish Rite for the sedated hearing test. It will either confirm or deny that Chandler needs hearing aids. I so hope they aren't necessary, but it is a small price to pay, if he indeed needs them.
Chandler continues to play so normally. Last night I went in my bathroom to find all of the toilet tissue unrolled in the floor. Instead of griping about having to clean it up, I laughed and took a picture of it. Last week when Chandler used a black marker to draw on the kitchen floor and the kitchen table and the chair and the wall and....anything else in his line of sight, I just laughed and said I'm glad they make that Mr. Clean eraser stick. If that is what I'm supposed to "get" from what God is trying to teach me.....I got it, God. You can take the cancer away and I won't ever worry about "stuff" anymore. I promise, God. I promise.
I must go and pick him up from the sitter. I just love getting to do that. Something so simple. So normal. Thanks for listening.
Happy Turkey Day!
In His hands,
Kim
Wednesday, November 3, 2004 2:23 PM CST Hi Prayer Partners,
I know it has been quite some time since I updated, but I wanted to wait for the final test results before I updated again.
Drum Roll, Please......
They are again NORMAL!....Let me say it again in case you didn't hear it.....they are NORMAL!!!!
These were urine samples that were taken in Atlanta 2 weeks ago. They have to send them to a special lab that is not in Atlanta so they take a long time to get the results. I have been on pins and needles waiting for these.
Now, this does not mean that Chandler is free of cancer. It just means that nothing is actively giving off any cancer markers. But I'll take a normal test any day of the week!
As his scans stay stable and his tumor markers stay normal, the better the outcome looks for Chandler's future. Right now we have had 2 scans in a row that are stable and 2 urine marker tests that are normal. Two isn't many, but you have to have two before you can have three and four and five....get the picture?
Upon driving home from Atlanta two weeks ago, I really talked to God and said, "Lord, I guess we didn't get the miracle that we prayed so hard for." (Meaning the scans were stable not completely clear). But then I told you that "maybe this is the beginning of our miracle.....maybe stable scans for the next 80 years IS our miracle." I am holding to that! Those test results today are maybe a small step in just that direction.
Thanks for checking in. I have more to write but it is for another day.
In His hands,
Kim
Friday, October 22, 2004 7:43 AM CDT Good Morning Prayer Warriors,
Thank you so much for your continued checking of this website. We are finally home and I hope I explain what went on this trip correctly.
First we had an audiogram to check on Chandler's hearing. As I'd told you, I wasn't too afraid of these results as Chandler speaks clearly and a lot for a two year old. Well, the test revealed that he DOES have significant loss in both ears. Significant enough to need hearing aids in both ears! Of course this is a big disappointment and frankly, a shock, but we have known for a long time that the chemotherapy that Chandler took could certainly do this to him. I don't think this has totally sunk in with me yet. He seems to hear so well! We will do one more test to confirm what he needs before having him fitted for aids. I hope to do this test sooner rather than later, but it will require him to be put to sleep....again!
The next test we did was the CT and MIBG scans. Both scans showed no change. Now, no change is better than a worsening, but it isn't as good as we'd hoped. They called both scans "stable." His last scan was 6 months ago and there was no change in the pictures at this time, but Chandler's blood and urine markers improved during this same time. They improved to the point of going to normal! These tests were also done this trip as part of his routine exam, but the results take at least a week to be reported. Once these tests come back I will feel more at ease, if they continue to be normal.
Dr. Rapkin said that this may be as clear as Chandler's scans ever get! That is not necessarily bad. If these pictures never get any worse and he continues to look and act like he feels great, then, so what if his scans look this way? Dr. Rapkin also said that as time passes if these scans continue to look this way, then it is actually an indication that this material they see is inactive and or dead. As I had told all of you before, I personally know of a couple of neuroblastoma patients who haven't had a clear scan in 6-8 years but never need treatment.The longer we go having no change the more confident they are that maybe this means nothing. Of course, I had to ask the dreaded question, "What if it gets worse?" and of course I got the answer I do not want. But this is our reality. Every scan will be scary, every bloodwork and urinalysis will be gut-wrenching. Every time he says he hurts something will fly a huge red flag in our faces that this could be the beginning of the end for him.
I am sort of in what my friend Kristen calls "Post scan chaos." It really, really stinks. My mind is in a thousand places all at the same time. I try so hard to positive and up beat but I hurt inside so much. Please don't take this like I need pity....I need prayer and so does Jim Mac so that we can face whatever lies ahead. We still have to try to be normal for Betsy and going around sad and scared is a total waste of time and effort.
While in Atlanta, I feel that God put some things in my path to help me. One of them was that Kristen came up to the hospital and waited with us for several hours. She brought Chandler books and me a bookmark with one word inscribed..."Faith." Another person was another mother we saw a lot during all our hospital stays. Her son also has neuroblastoma and is now stage 5...with no hope of cure. I feel God put her in our path to show me that those hearing aids are such a small price to pay when it comes to having Chandler live. I also, unbelieveably, was enjoying dinner with my parents, Aunt Kathy, Aunt Gretchen and Uncle Steve when I saw a precious red head speed by going to a table in the back. It was Candler Martin! (Carter's brother). I was glad to see them. Again, yet someone else in my path to make me realize well, that life does go on after cancer.
So, this is where we are....again waiting for the other shoe to NEVER, EVER drop. We hope and pray that next week's blood and urine continue to be normal and that the next scan is either stable or better.....just NOT worse!
Thanks for caring and for keeping us uplifted.
In His grip,
Kim
Saturday, October 16, 2004 9:19 PM CDT Hello Prayer Warriors,
I want to begin tonight's entry with specific prayer requests. We go to Atlanta next week for our first "post treatment" scans and man are we scared! I just keep trying to give all my worry and fear to God...I know I'm supposed to...but it is so hard, I am so human!
If you can, please print out this entry and pray like crazy at these critical times:
Tuesday, October 19 1:00 Hearing test to see how much damage the chemo has done to Chandler's hearing. We expect this test to reveal very little loss as Chandler hears us and speaks well for a 2 year old. Nonetheless, we ask for prayer to confirm what we think we already know.
2:00 Nuclear Medicine Injection Pleaase pray that this needle stick be done quickly and without pain for Chandler. Please pray that this procedure is done skillfully and no errors are made in doing it. This is a critical part of the scan the next day and we want it to reveal ALL that it is suppose to.
2:30 Physical Exam done by oncologist. We pray that this exam reveals only good news for Chandler's continued road to recovery.
Wednesday, October 20 8:00 arrive at Scottish Rite hospital for sedation prep.
9:00 MIBG scan This is the scan that is unique to neuroblastoma. This scan is the one that we are so afraid of because it shows every little trace of cancer! I get to be in the room with Chandler during this one....I can see the monitor....I'm certainly NO radialogist(I can't even spell it) but I can see big obvious spots. I pray that not only do I not see any, but also that the doctors can't see anything either, no matter how hard they try! Please also ask for peace for me in anticipation of this scan.This is a long scan we will be in there about an hour and a half!
2:00 Echocardiogram (heart test) this one is to check Chandler's heart for damage from the chemo he took. We hope that God has protected his heart from any and all problems. I think they might need to check mine...It will be working overtime!
Thursday, October 21 10:00 CT scan Again looking for more cancer. We pray that none will be found! This scan will be quick...probably only 20 minutes or so. Once this scan is done we are free to go home, I think.
The docs read these scans pretty quicky and dictate their reports on the spot. I hope to know about them all before the drive home....we'll see.
As I understand things, if these scans are at least considered "stable" then we will do nothing. Of course we are hoping for better than just "stable", we are looking for words like "improved" or "clear" or "no evidence of any disease". But for those unfamiliar with neuroblastoma, there are children living out there for 5, 6, 7 years never getting a clear scan but it isn't getting worse either. It is all a waiting game! Even if we get a very favorable scan, we will still need very close monitoring for a very long time (many, many years). We will repeat this repetion of scans many times in the coming years.
If we should get an unfavorable scan....gulp...then our life will turn upside down again. We will require some sort of experimental treatment that will be offered somewhere besides Atlanta...NYC, Philadelphia, Houston, Los Angeles and maybe a few more they haven't even told me about. But of course we will willingly go to do the best we can for Chandler.
I know this is a lot to absorb. But I sure do want folks to lift us up this coming week. And don't leave out Jim Mac and Betsy! They will stay home for work and school. Meme and Papa will accompany Chandler and me to all our appointments.
Thanks for listening and praying!
In His firm grip,
Kim
Monday, October 4, 2004 8:27 PM CDT Hi Prayer Warriors,
Tonight I gladly relive a wonderful experience...The Lighthouse Family Retreat. Jim Mac, Betsy, Chandler, and I were lucky to be given the opportunity to spend 4 days together with 8 others families who are all experiencing childhood cancer too. We were given the opportunity to share experiences, laugh, cry, and be enveloped in love by volunteers whose sole purpose was to provide prayer and support for families fighting childhood cancer. The children were taught songs about "having sand in their teeth" or "the chocolatey drink, Yoo-Hoo." Betsy was especially allowed to shine. She stayed busy each day doing all the sorts of things she loves....making crafts, singing, drawing, and getting to be the center of attention. The night of the talent show, she sang an acapella solo and did a gymnastics routine with another girl! She was awesome! Her favorite friend that she made was another 8 year old girl named Caroline. Unbelieveably, the child's mother graduated from highschool with Jim Mac here in Moultrie! She now lives in Atlanta and is a volunteer with this organization. How neat is that? Small world.
The sharing time with the parents was beyond great! There are so many emotions all tied up in this "cancer world." It is nice to get to really let it all out with others who truly understand your pain. Our experiences are all different...different cancers...different ages at diagnosis...etc. but we all face death in a very real way. We all face life in a very real way too. It is comforting and encouraging to hear that others have felt the same feelings that you have. The volunteers were all very Godly people and they allowed us to really get a lot of stuff out. It was cathartic and freeing to verbalize so much that goes on in our heads.
We met all the other families, but one stood out to us because they were from Thomasville which is only 30 minutes from here. We plan to stay in touch since we are so close. We were also fortunate enough to stay with The Flemings! Chandler loved playinng with Logan or "Wogan" as Chandler refers to him. It was so nice to be with them. Jim Mac and I enjoy their company very much!
This ministry is wonderful for cancer families. I look forward to being able one day to go back and be "on the other side" volunteering to help others get through this time. I pray that it won't be that far in the future. Maybe Betsy can be the song leader and Chandler can share his story with other fighters. Maybe Jim Mac and I can be the facilitators for the parent group. It would be an awesome opportunity!
Scans are looming! Tell anybody you know who prays and believes that prayer makes a difference that October is a huge month! It decides whether or not Chandler has to endure further treatment. If the tests are favorable, we continue getting to go on with the rest of our lives: work, going to Miss Pat's, getting to stay home, etc. If the scans are unfavorable, our lives will be again turned upside down. It is likely that we will not even be able to be treated in Atlanta, more likely Philadelphia, NYC, Michigan or some other far off place. Chandler seems great on the outside, but its those scans that matter. I believe in my heart of hearts that God has total power over this awful, awful disease. I just keep begging that it be His perfect will to spare Chandler any more pain and treatment. Please join me in this prayer. Tell everyone you know to pray too. Let's bombard heaven with prayer for clear scans! Our schedule is as follows:
Tuesday, Oct. 19 Hearing test
Nuclear medicine injection
Physical exam/ Bloodwork
Wednesday, Oct. 20 MIBG scan (this is the "biggie")
Echocardiogram
Thursday, Oct.21 CT scan
We will get the results of most of these tests pretty quickly...not immediately but most likely before we leave Atlanta. I just get nauseous sitting here typing it all out. Lord, how am I going to hold it together while actually doing it? Your prayers will help.
I've typed way too much tonight, but the truth is, I had to make myself stop talking about the Lighthouse Retreat. It was so needed for our family. Please do tell others to lift up Chandler! I look forward to reading Chandler's guestbook more than you know. Thanks for the uplifting messages that you leave. They do mean so much!
In His hands,
Kim
Wednesday, September 22, 2004 1:52 PM CDT Good Afternoon Prayer Warriors,
It truly is a good afternoon for us today! On Monday our buddy, McKenzie Fleming had her first scan following her relapse scare 6 weeks ago. Thankfully, her scan was good. Anytime a scan is good, it is like a weight is taken from the shoulders of all who love the cancer survivor. Our other cancer bud, Catie will be scanned this upcoming Monday, so we ask for prayers for the scan and for her parents who are getting pretty "edgy" about now. Our scans aren't until October 20&21 and I'm already pretty tense. We've not had a scan since April, so we can only hope and pray that this one is better.
My uncle Walt Gordon from Fitzgerald is continuing his cancer treatment in Atlanta. I was able to see him Monday evening and he looked so very good! Chandler and I were able to go see my cousin Katie's church musical and Walt was also there. Chandler really enjoyed the music too....he was dancin' in the aisle! I'm sure there were folks there thinking, "Look at how that mother is allowing that child to just get up and dance!" Oh if they only knew!!!!
That reminds me of a little story I'd like to share on Chandler. We listen to a pretty good bit of contemporary Christian music on the radio and right now they play a song, "I Can Only Imagine" quite a bit. Chandler just started singing right along in the car the other day. I couldn't believe it. He also knows the chorus to Jimmy Buffet's latest, "Licence To Chill" which is hysterical! But I know why he knows that....I've played that one to death! Hee Hee
Chip and Amber, my brother and sis-in-law, are getting moved this week from Albany to Dublin. They had some problems with the movers having "sticky fingers" but thankfully, Amber was on top of things, realized what was missing and alerted the authorities. They got their belongings back and have hired other movers! Whew! That was a close call! Their baby is due on October 19...(.two days before our scans!) So their hands are definately full. Of course I'm hoping my new neice ,Emma, comes early so we can be there for the whole birthing experience!
Chandler continues to SEEM so happy and healthy! It is tough to think that we might be in for much more treatment once this scan is done. Please pray that the scan is much improved and we can go a little more time before more treatment is needed....like maybe 70 years or so. That would be very good.
I talked to our friend and nurse, Mama Duck the night that Carter passed away. She told me she plans to toast Chandler the night before he gets married. Lord, I hope so! I like thinking about things like that! You know there are Mamas who hate to see their babies grow up...I am absolutely NOT one of those.
Well, I do so appreciate all of you who check in and read about us. Last week I was pretty low and your messages really lifted my spirits! You are the vessels that God uses to speak to me. Thank you!
In His hands,
Kim
Tuesday, September 14, 2004 2:14 PM CDT Hi Prayer Partners,
This is my third attempt to update. I have been in such a "funk", for lack of a better word, that I just didn't know what to say. We have had some dreary weather and Carter's passing have both taken a toll on my general outlook on things. I greive for The Martin's loss but celebrate that Carter has finally won his cancer battle. His leg is now back and stronger than ever before. He can run and play like he used to. I hope they have the Food Network in heaven, because from what I hear, Carter loved "Iron Chefs." Ha Ha. He will be missed but we will see him again, because God promises we will.
Chandler is now potty-training and doing so well! He does better for Miss Pat than he does for us, but still he does go. I can't believe it! He has every kind of pull-up that Pampers or Huggies makes, as I use coupons. I can't belive all the different designs....Buzz Lightyear...Elmo...Spiderman...the list is endless! He even has some real cloth ones with Thomas the Tank Engine! I don't remember the selection being so wide for Betsy when she was training. Madison Avenue does a good job, don't they?
School continues to be so good for me. I love my class and am enjoying 5th graders so much more than I thought I would. God works things out!
Next month is still looming. I called today and got our last appointment scheduled for the week of Oct. 19- 22. We are scheduled to have a hearing test, a nuclear medicine test (that's the MIBG one that is so important), an echocardiogram, and a CT. For the CT and the MIBG, Chandler is to be put to sleep, as he must be sooooo still. I am nervous about having all of it done, but more scared of the results. I am so fearful that sometimes I can't enjoy today for worrying about tomorrow. I know it is a waste of time and energy, as the results are going to be what they are...worrying or not! I just need to focus on these little milestones like the Tee-tee in the potty and Chandler being able to answer questions. He is quite a decision maker! Its funny when they start realizing that they have opinions.
I'm rambling but this is just how my mind has been all week. Thank you for listening.
PS Happy Birthday Me Me!
In His hands,
Kim
Wednesday, September 8, 2004 3:10 PM CDT Hi Prayer Warriors out there,
Sorry for the delay in updating. Did you think Hurricane Frances got us? Other than our yard being a real mess, we did not have too many problems. Believe it or not, we even continued to have power throughout the whole ordeal. I've never watched so much Weather Channel in my whole life!
Chandler is now back on his final round of Accutane. I can't believe I can see a small light at the end of one tunnel. I'm not too sure how long I'll get to feel this way, as I know we MAY be in for a whole lot more treatment. But maybe not. God has this all in control, I have to keep reminding myself. I was talking on the phone with Catie's mom (see link below) and we talked about how this cancer plays with your mind. I think things and then chastise myself for thinking those thoughts...when I can think whatever I want, because no matter what it is, I can't "jinx it" or "fix it" . This whole ordeal is God's perfect plan. I do hope and pray that I'm getting what God wants me to from this experience. It's like praying for patience...don't ever do it or God WILL teach it to you!!
I'm rambling. Chandler continues to act like the most normal 2 year old you have ever seen. He is acquiring language at break-neck speed. He is really getting a personality that is all his own. I am sooo grateful, but somehow it makes it seem harder to let him go, if I have to. (There you go again with those thoughts!) See what I mean? However, I am so glad that he seems so normal so NOT in any kind of pain or any limitation of any sort. So many of these cancer kids have such marginal lives, I'm appreciative of every bit of normal I can squeeze out!
Please continue to check in on Carter (see other link below). His family is hurting so very badly.
In His hands,
Kim
Monday, August 30, 2004 7:34 AM CDT Hi Everybody,
I said I would update on the urine specimen...if you haven't read THAT story, by all means, read it in the history...it was the last entry. The results were ...drum roll please...NORMAL!! Praise God from whom all blessings flow! We are so grateful to everyone who remembers Chandler in their daily talks with God. Prayer does impact us, and we thank you.
We still get another week off the accutane and then it will be the last 2 weeks of that. Good in a way, but scary nontheless....my friend and fellow cancer mom says that coming off treatment is suppose to be good, but living in the fear of relapse is no picnic. I am both anxious and nervous about it....but for all we know once they scan Chandler next month, we might be in for a whole lot more treatment. Please join us in prayer that those up coming scans are considerably better....completely clear would be great, but if they are just better...then maybe we can put off more treatment.
A quick update on the others I mentioned in my last entry. My uncle Walt has begun his cancer odyssey. He will be radiated on the very same machines that Chandler was last spring. I have told him that the technicians down there (it is in the basement of Emory) are wonderful and that he is in very capable hands!! He will require daily doses for several weeks, but he is strong and has God in his corner! PTL!
The other person I mentioned is a baby from Tifton. Her name is Caroline. Her biopsy revealed that she does NOT have neuroblastoma, but rather another condition called neuromitosis. This is not cancer but can be a very scary. This family needs our prayers too. As I learn more, I will try to tell here.
Finally, I ask for prayer for our cancer buddy, Carter Martin. I have written about him before, and many of you read about him at caringbridge.org/ga/cartermartin. Carter is going to soon stop hurting, but the hurt is more intense for his family. Please ask for peace for them.
In His hands,
Kim
Friday, August 20, 2004 1:47 AM CDT Hi Prayer Partners,
Chandler and I went to Atlanta on Wednesday for our monthly check up. (Thanks Theresa Thomas for being my "riding partner" once again.) The appointment went well except that they wanted to check Chandler's urine and we had a pretty tough time collecting that! Imagine Chandler and I locked in the bathroom for 30 minutes....Chandler is bottomless..."letting it all hang out" so to speak and I'm coaxing him to "tinkle in the cup". Yes, I'd already had one of those little bags in his diaper, but it had leaked. All the while offering every kind of liquid that I could get my hands on! My whole shirt was drenched from letting him wash his hands in the warm water in the sink. Chandler is standing in the middle of the floor stacking those orange lidded collection cups and then knocking them down. Of course we'd made the ever popular "whishing sounds" as well as letting the faucet run....I think I tried all the tricks. At about 3:30, (we'd been there since 11:00) I realized that if I was to get through down town I needed to be leaving, but since that test is such a good indicator, I hated leaving with the collection incomplete. Thankfully, they sent me home with more collection bags and cup and let me take it to our local hospital for them to send out. Whew!
I will post the results of the test as soon as we hear something. Last month they were normal, we surely pray they still are! Anything normal, we are happy about.
They also had to collect blood but he didn't even flinch when they stuck him. I had put some numbing cream on, but I think it is more about God leading a skilled nurse to put it in just right. After having some very bad "stickers" you also are all the more grateful when you get a good one.
I want to take this opportunity to request prayer for two folks. One is my uncle, Walt Gordon. He had a needle biopsy also on Wed., that revealed a malignancy in his neck. He is having a regular biopsy today and will decide on therapy once those results are collected. The other prayer request is for another baby, named Caroline. She is 3 months old and is having surgery at Scottish today to biopsy what they strongly suspect is neuroblastoma, Chandler's cancer. I talked to Caroline's mother yesterday and she seems so tired and of course scared to death....oh how I remember those first days.... but yet strong in spite of it all. Please join me in prayers for strength and healing for both these new cancer patients and their families. I will update here when I hear from either of these two.
Thanks for checking in on us. Most importantly thank you for remembering us when you talk to the man upstairs! Isn't it awesome that He listens and answers prayer everyday?
In His hands,
Kim
Thanks, Misti for posting the new pictures!
Monday, August 9, 2004 2:14 PM CDT Hi Prayer Partners,
Just a brief update today....no news in "the cancer world" is good news. Chandler continues to do so well, as far as we can tell. We go to Atlanta for a check up on Wednesday August 18 which will be a "regular" check up. Next month, however, will be much more involved, including several scans. These scans will reveal our next step. If the scans are good then, we may just continue to watch Chandler and rescan in 3 more months....always expecting to see reduction in the amount of cancer.
Should the scans not be good, then we will discuss the next treatment option. This could be another transplant, some sort of experimental medication, or maybe something all together different that the doctor hasn't even discussed with us as of yet. Of course we pray that this isn't the case! The very best blessing could be that all the cancer is gone....never to return and Chandler grows to to be a very old man with lots of children.
Please continue to check on us and pray for total healing for Chandler. I have to tell myself, the worse things look...the bigger the miracle it will be when God heals him. So I ask that you bombard heaven on our behalf.
There are so many children who have recently lost their battle or are very near the end that I almost feel selfish for asking for prayer for us....but I know God knows my heart and knows that I ache for them and their parents. I also know we are just a breath away from where they are. I hope you understand what I mean, like I said, I know God understands.
McKenzie Fleming had a scan today....prayin' it is as clear as a bell! There is a link to her site at the bottom of this page.
In His hands,
Kim
Sunday, August 1, 2004 4:59 PM CDT NEW PICTURES Monday 8/6/04
Hi Everyone,
I have started this update numerous times, but have never managed to finish it to update. Sorry, any of you who are teachers know why I haven't had the time. Ive started school 15 times before....but every year it seems like the first time.
Chandler had a super week with Miss Pat (the sitter) and getting to play with all new kids was great! He actually asked to go back to her house after I picked him up! How's that for getting right back into the swing??? Miss Pat is certainly sent from heaven. We have been so lucky with childcare...wait a minute, lucky ain't the right word....blessed is the right word, because I know He arranged the whole thing. Anyway, when I wasn't comfortable letting Chandler be around other kids at the end of last school year, He provided Miss Betty to stay at our house and keep only Chandler. She too is a Godly, praying, believing, wonderful caregiver. We are grateful to both of these women for their contributions to Chandler's many prayer warriors.
Tomorrow is our first day of school (with kids) and I am glad to finally be with these children. I have prayed and thought about what this year will be like and finally it will arrive tomorrow. I bet I don't sleep a wink tonight.
Right now Chandler continues to play and run and do everything a 2 year old is supposed to. He loves to be read to(that's the only time he will be still) and he loves to watch Thomas the Tank Engine videos. He is growing like a weed! I put on a 2T sized shirt this morning for Sunday School and it is nearly too small! Too bad I had already pulled off the tag!
Betsy will begin 3rd grade tomorrow. She is just getting prettier and prettier...hopefully, you'll see pictures soon. (Remember, I'm the mom, I can brag...Hee Hee).
I have more to tell, but not enough time...I'll tell more later. Pray for a smooth morning for everyone tomorrow.
PS To Jessica, Lauryn, and Laurie I love hearing from my former students!!! You all are soooooo precious to check on Chandler!
In His hands,
Kim
Sunday, July 25, 2004 11:39 PM CDT Good Evening Prayer Partners,
Today has been crazy at the Booth household. Remind me to never end a vacation the day before going back to school! Yikes! Unpacking, washing, and allthat other stuff...plus, knowing that I should've been in my classroom already is making me NUTS!!
Oh well, it is worth it....getting to see my sweet boy's face when Thomas the Tank Engine rode right in front of our hotel! His whole body stiffened...his little toes were curling in his sandals...you can imagine! Luckily, the railroad ran just in front of the hotel, so we got to watch all the "prep" work...washing Thomas' face, etc. that they did the day before. We got lots of pictures even before SaturdaY! It was a treat to see Chandler's joy.
The ride Saturday was so good too. At first, I don't think Chandler quite knew what to make of everything, but he soon warmed up. Hopefully, we'll be getting some of the best shots on this website soon.
We sure do appreciate Papa and Meme's generousity. I don't know if we could've gone without them. I know they enjoyed seeing Chandler's delight...who wouldn't? Even if Betsy wasn't as carried away with Thomas, she did get to whitewater raft down the Tuckaseechee River with Jim Mac. By next summer she'll be ready for some more scary rapids! We'll gladly oblige, as Jim Mac and I enjoy rafting a lot too. She liked seeing Brasstown Bald and we took her to see Rock Eagle in Eatonton on the way home. She played her Gameboy while riding Thomas Saturday morning! Ha Ha
Thanks for checking in on us! Tomorrow we'll start another school year. Hopefully, this will be a great year for Betsy who begins THIRD grade(I can't believe that!)and Chandler will return to Miss Pat for childcare. Also on tomorrow,we finish round #4 of the 6 rounds of Accutane that we have to take. Please keep praying that Chandler's upcoming bone scan will reveal huge improvements in the remaining cancer. After that good test result from last week, I am getting a bit more excited to see in the scan what work God has done in Chandler's bones! Again, this scan won't be until we've finished all 6 rounds of the Accutane...probably late September or October...but it will be here before we know it!
Pray for our friends Carter and Shelby too. They both had scans this week that were not good. Both have websites on Caringbridge...same as Chandler, just on the end, change from chandlerbooth to cartermartin or to shelbyprescott.
In His hands,
Kim
Thursday, July 22, 2004 8:17 PM CDT Hi Prayer Partners,
What do ya know....but the hotel in Dillsboro has a "business center" so I can update even while on vacation!!!
For those who read from Sunset, we stayed two nights at Johnny and Lois Gay's Mountain Retreat. It was lovely! We felt like we were in a fancy treehouse when we'd go outside on the porch in the mornings. The first night Jim Mac went outside on the porch to enjoy the cool, night-quiet. Quiet, heck! The frogs, crickets, and whatever were so loud that he came back inside! Ha Ha How's that for a city boy? Truly, it was so peaceful. We enjoyed Blairsville very much and of course I enjoyed visiting with Lois. She looks exactly the same...just maybe a bit more "rested." But why not? She lives in paradise and doesn't have to worry about making AYP! Hee Hee
On Wednesday we went to the Hiawassee (sp?) Fair and the very first folks we saw were Zeke and Donna Cothern! She had recently gotten good news about her "cancer fight" too. ( If you didn't already hear, you can read our last journal entry.) Jenny was there too. They all looked so great and we were so glad to see them!
Today we visited Brasstown Bald Mountain and then drove through some of God's most beautiful work...from Blairsville to Dillsboro! The views are breathtaking! Betsy, Jim Mac and I (Chandler slept) enjoyed stopping some along the way to just look, and smell! Now I understand why my friend Malinda likes to drive through here on her motorcycle!
My parents have joined us in Dillsboro. They took us to supper tonight and will help out with Betsy and Chandler so Jim Mac and I can maybe do something....I hope to go to Asheville tomorrow to the Biltmore house...we'll see. Depends how the cash flow is looking...Ha Ha.
Papa, Betsy and Chandler enjoyed an indoor swim tonight. It still is so amazing that Chandler gets to go swimming after going sooooo long with that central line.
Gotta run go give meds and hit the hay! Thanks for checking on us. Thomas the Tank Engine rolls in Saturday morning. We ride at 10 am! Chandler is very excited! Maybe I'll get to update again before going home.
In His hands,
Kim
Monday, July 19, 2004 8:10 PM CDT Good Evening Prayer Partners,
I said I would update as soon as I found out about Chandler's urine test from last Wednesday....well....(do you hear the drum roll?) Atlanta called today with the glorious news that it was NORMAL!!! Let me repeat, it was normal! Normal, normal, normal! The last time this test was performed, (at diagnosis) Chandler's results were 220. Today it was less than 27....again, I say, normal!
Of course, we give all the glorious credit to our Lord Jesus for giving us one more blessing to add to our ever-growing pile. It is the prayers of His praying people that are being heard! Thank you, God and thank you for praying on Chandler's behalf!
I do not know exactly how significant this test really is...the nurse told me it is one "marker." I don't care...anything that says our baby is normal is worth a big holler! Of course, we still have a scan in September to contend with....but for today Jim Mac, Betsy, and I are pretty happy.
The Booth Family hits the I-75 asphalt once again in the morning headed to Blairsville,GA and then on to Dillsboro, NC where we will ride THE Thomas The Tank Engine! We will be in Blairsville for 2 days and Dillsboro until Saturday, so I won't update until Sun. or Monday. Chandler is obsessed with Thomas and our doctor in Atlanta told us about Dillsboro. Thanks, Dr. Hal! I will have plenty of film ready to capture Chandler's excitement. Hopefully, I'll get some on this website!
Thanks again for checking up! We appreciate you.
In His hands,
Kim
Thursday, July 15, 2004 9:04 PM CDT Good Evening Prayer Partners,
I have so much to say tonight and my typing is so poor...please forgive.
First, our check up on Wednesday was a good one as far as I know. The doctors continue to be so positive...thank goodness. Chandler did have a urine test done that hasn't been done since diagnosis but we do not have those results yet (they take 2 days to come back). The doctor said he expects them to be normal or near normal based on how Chandler looks and acts. So , of course, I'm asking for specific prayers that this test reveals good news. I hope to hear from it tomorrow...I'll let ya know here as soon as I know something.
Chandler had grown 2 inches and gained over a pound since last month's check up. Again, this is so good that he continues to grow normally. I say constant prayers of thanks for every pound or inch.
Cis-Retinoic acid (Accutane) continues to go smoothly. I am so very grateful that Chandler is able to take these "horse pills" with little agitation or frustration or severe side effects. We can handle a little dry skin for 2 weeks each month, if it does the job on the cancer. At least there is no nausea, hair loss, or worse!
I have two praises for other "cancer kids" tonight to tell you about. One, Catie, who has/had brain cancer (www.caringbridge.org/ga/catie) got a good report from her scan from today. We celebrate with them tonight as Catie continues her treatment with another good scan....they scan routinely every 3 months...and every time it is terrifying for the parents....we are terrified of bad news. It is grueling waiting for the results and you are so happy when they are good. Again, we praise God along with Catie's family for her good scan.
The other praise is for another neuroblastoma child, Jack (www.caringbridge.org/ga/campjack). Jack is on our same protocol, just not as far along as we are. He had a pre-transplant MIBG scan yesterday and it revealed no evidence of disease! Our oncologist, Dr. Rapkin said this is a "first" for him. In his time at St. Jude and Scottish he's never had a child achieve NED status BEFORE the transplants! This is great news for Jack and his family...we give all the glory of this miracle to God in heaven! They will go ahead with the transplants...to be absolutely sure....but it sure looks good for him. Again, congrats, Jack!
I so selfishly hope to one of these days get to say the same thing about us after our scan in September. Until then we are so glad that Chandler is being soooooo normal. Just today I had another stranger remark , "Boy, he's not afraid of anything!" I said, "Mam, you have no idea." (And laughed to myself.)
And finally, I just want to say thanks to my "riding partners", Malinda and Theresa for going to Atlanta with me yesterday. It is so much more fun to have friends to share that long ride. You both are terrific....its even Ma's second trip with me! Thanks bunches! PS I love my "happies."
We are planning to return to Atlanta on Saturday for a CURE Family picnic (This is a support org. for pediatric cancer). This should be a happy occasion for the Booth Family to "celebrate life" with others who are still fighting the beast. Pray for travel mercies.
I've said enough for tonight. Thanks again for checking in on us. It really matters!
In His grip,
Kim
Monday, July 12, 2004 5:50 PM CDT Hi Prayer Warriors,
Thank you, thank you for continuing to check on Chandler. I don't know how we'd cope if not for so many of you who read about us and pray for us.
We had a glorious time with the Wilkins Family at Tybee Island. Tre's family is so generous to share their home with us. We loved getting to see them...NOT in the hospital! They took us to a great restaurant, The Crab Shack! We loved it. Everything about the trip was so restful and fun. Thanks Jen, Tre', and Catie!
We have a check up on Wednesday. Please pray that our trip is easy and the tests Chandler endures will be easily tolerated (needle pokes) and will reveal only good results.
My final prayer request is for a newly diagnosed neuroblastoma child from Valdosta. I talked with his mom today. They are at the beginning of their cancer odyssey. I have put a link to their site below, if you would like to write in their guestbook. As I began this entry,by saying your words of hope, your prayers, are just so important!Please consider adding them to the list of kids that you check on.
Chandler continues to play, run, sing, drop food on the floor, whine and cry, make messes, draw, paint, smile, giggle, and all the other things normal two year olds do so well. Thank you, God!
In His hands,
Kim
Friday, July 9, 2004 8:40 AM CDT Hi Prayer Partner,
Just a brief update today....I spent much too long on the computer already this morning. Just wanted to let everyone know that our next doctor's appointment will be Wednesday, July 14 at 10:30 in the morning. It should be "routine" (as routine as it can be for a 2 year old to see an oncologist), but blood will have to be drawn for tests and since he no longer has a line ,PTL, this will require finding a vein! (Looks like in this day and time a less barbaric way could be developed, but I digress.) They will check his blood and urine, pray that all these tests will be easily administered and more importantly, they will reveal all good news! Of course the scan will still be done and this will be more conclusive, but these tests are all part of the "cancer puzzle" and must be done.
School starts here for teachers, on Monday, July 26 so I will be among those grudgingly(but glad too) going back. Our school made AYP for the second year in a row, so we are set for another good year of learning. Chandler will be going back to Miss Pat Davis for childcare. I know I should be letting him go to her a bit before, to get used to her and that routine, but I am too selfish. I want him here with me! He will love getting to play with the other children there. I am so glad that Chandler is well enough and has enough white cells that he can be with other kids!
Chandler still has another scan in September that will determine if another transplant(or some other experimental treatment) is on the horizon. Right now we are just so grateful to God for all the normal things we are getting to do. We hope He allows it all to continue and more treatment is not needed. Pray that prayer with us, please!
Finally, we are headed to Tybee Island as a family to spend some time with another "cancer family." Catie's mom invited us and we gleefully agreed on this weekend. Thanks Jen and Tre' for asking us. We are so glad to be with you....NOT in a hospital! Looking forward to sand and sun with you!
In His hands always,
Kim
Thursday, July 1, 2004 12:13 AM CDT Hi Prayer Partners!
We've had a sick computer so I've not had a chance to update lately. Jim Mac wrote in the guestbook(while at work) that we had a wonderful day at Wild Adventures in Valdosta last Saturday and it was! I cried pure tears of joy when I watched Chandler "drive" the little jeeps. He looked so "normal" steering the little cars on the predetermined track! The college student who was running the ride asked what was wrong and when I told her that Chandler had cancer she just couldn't believe it. It is so my prayer that our future is full of moments where we can tell others what Chandler has been through and that they can't tell just by looking at him. I also hope that Chandler is able to tell what God did for him!
I also want to thank the ladies from Arbor Baptist Church's Space and Grace for letting me tell them our story! I hope it wasn't too boring and it did me a lot of good to share!
Well, we go back to Atlanta for another "routine" check up in less than 2 weeks. I hope they are still as positive as they were last time. We've now finished three of the six rounds of Accutane that we have to take. Please join us in prayer that the medicine is working to clean out the rest of those cancer cells that remain.
Thanks for all the prayers!
In His hands,
Kim
Thursday, June 17, 2004 10:01 PM CDT Hi Prayer Warriors,
Tonight I sit at this keyboard just oozing gratitude to our wonderful Lord Jesus. I know we all have so much to be thankful for everyday....but tonight's entry is especially so.
Chandler had a check up on Tuesday (Thanks Sophie for going with me.) The visit was such a positive one! Dr. Rapkin was so encouraging! He was well pleased with Chandler's growth and activity level. He really seemed so pleased with what he saw in Chandler. Of couse, we will continue to watch Chandler with special care to look for any changes in his walking, activity level, etc. Dr. Rapkin is thinking that we should put off scanning Chandler until we are done taking the Accutane which will be sometime after September 19. As long as Chandler continues to appear to be pain free and he continues to play and run and do all the normal things a two year old should, we are glad to not scan him. I know if Rapkin had any doubts at all, he would be scanning us all the time!
The other reason I feel so grateful tonight is because of our fellow cancer buddy, McKenzie Fleming, received news of a miracle today. This is the second "miracle" I have had the pleasure of knowing about....first, Brandon Connor and now McKenzie! (You can read about their struggle at www.caringbridge.org/ga/mckenzief) there is also a link at the bottom of this page. In a nutshell, McKenzie went in for a scan a couple of weeks ago...they found at least 15 lesions in both lungs....docs were sure it was relapsed rhabdomyosarcoma....they did a biopsy...NO CANCER! I feel like this was not just a miracle for the Flemings, but also for the Booths! It just goes to show that God really is still in the miracle business!!! Gosh, I needed this wake up call. It is such a vivid reminder that He is able and is still willing to heal! Prayer was certainly answered today...in a big way! We celebrate McKenzie's health today along with the Fleming Family!
Thanks for always remembering us in your prayers. Still waiting for those clear scans and NED(No Evidence of Disease) status!
In His hands,
Kim
Saturday, June 5, 2004 1:49 PM CDT Hi Fellow Prayer Warriors,
It pains me to write this entry. Our cancer-fighting friend, McKenzie Fleming found out yesterday that her rhabdomyosarcoma has returned. McKenzie and family attend our same church here in Moultrie.... Trinity. We were already friends with Steve and Carol even before McKenzie and her twin, Kiley were conceived! McKenzie was initially diagnosed at the tender age of 4 months...about 6 months before we were. They did chemo for 13 months and went to Boston, Massachusetts for radiation. They had a scan only 3 months ago....and it was clear! DAMN THIS CANCER!!!!! I'm sorry if that offends....right now I am so angry! She is just a baby!
Please , please pray for the Fleming Family. They go to Atlanta for biopsies next week and then decisions will be made based on what the results reveal. Carol and Steve have said they will continue to fight as long as they have a chance! God hasn't let her go yet!You can go to her website and read their history if you are interested! A link is below.
Chandler continues to be a NORMAL two year old. He is so smart ...he repeats anything he hears...so we have to watch it! Ha Ha He has been to the beach, been swimming, spent the night at Meme and Papa's (with just Betsy, no Mom or Daddy there) and so many other things that I normally would have taken for granted. To quote my cancer-Mom friend, Leigh Ann Martin, "Thank you, God for another day." To add on...thank you for a normal, regular, average day with no hospital, no drugs, no doctor, no test results to worry about, no counts, no nothing. (I never knew how grateful I could be for nothing.)
Keep us in your prayers for continued good health and for those clear scans that keep illuding us.
In His hands,
Kim
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Wednesday, May 19, 2004 2:57 PM CDT Hi Prayer Warriors,
Monday Jim Mac, Chandler and I went to Atlanta for a check up. It went very well. They had not seen Chandler with hair so everyone was rubbing his "hairy" head and smiling so see him look more normal and less like a "cancer kid". His weight and height were good as was his blood work. Terri(his nurse practioner) came in to kiss all over him. Actually, it was like one big old "love fest." Everyone seemed so glad to see Chandler looking so well.
Jim Mac had been asking me at home, didn't I think they ought to remove that central line from Chandler's chest? My standard answer was always, "I do not want him to be stuck and the docs would decide what is best." Well, they were all in agreement that it needed to come out....at least for the summer. They are now thinking that Chandler won't need to come back to see them until some time in July so why not let him swim, bathe, and be more normal until then? They also reminded me that it can be a source of infection, so it is safer to be out if we aren't actively needing it. I still can't believe that I can take off his shirt without "unpinning" him. It just seems so weird that he can take a bath like a normal 2 year old! He took a good long one in our garden tub last night.
Speaking of getting wet, we have already reserved the waterpark for his birthday party! We had reserved it last year for Chandler's first birthday, but that was right at the beginning of our nightmare. He had a PICC line then and it couldn't get wet. So now we get to splash and play this year! I am so thankful to God for this little stretch of "normalcy."
I don't have time to write about Relay for Life in this entry, but I will soon. It was great, but I will tell more later.
In His hands,
Kim
Tuesday, May 4, 2004 6:57 AM CDT Dear Prayer Warriors,
Many of you have signed the guestbook saying, "No news is good news, I hope." Well, that is exactly correct! Chandler has now taken his first of six rounds of cis-retinoic acid. He has taken 3 pills a day for 14 days straight. Now we have 14 days off and then we will start up again for another 14 days on and so on. It is absolutely amazing that he has been able to swallow those pills with very little trouble once he understood what we wanted him to do. A lot of prayer was behind this, I know!
Ms. Betty is working out so well keeping Chandler while I go back to finish the school year.She is so sweet and Chandler loves her. Thank you, Kimberly and Meme and Papa for helping to cover her costs.
We have an appointment to see our oncologist on Monday, May 17. This is just a "routine" check (what is routine about being less than 2 years old and seeing an oncologist?)for them to see how he's doing. We will probably not scan Chandler again until July. The doc seems to think that time is now our best indicator of what comes next for Chandler. You know we are still waiting for those magical words....clear scans...no evidence of disease!!!
Relay for Life in Colquitt County is May 14&15. The kickoff will be at 6:30p Friday night. I am already anxious about Chandler walking that first lap called "The Survivors Walk." I hope he does that walk for the next 90 years!
Y'all all take care, give your kids an extra tight squeeze!
In His hands,
Kim
Friday, April 16, 2004 11:18 AM CDT Hi Prayer Partners,
I just wanted to add yet another praise...Chandler started taking Accutane on Monday, April 19. It is one pill in the AM and TWO in the PM and as of Wednesday, he has taken these doses with a sweet cooperative spirit like a child much older than 22 months! He continues to amaze us with his ability to understand what we ask him to do. This indeed is yet another answered prayer. God is so very good!
So sorry for the lengthy delay in updating. The final week of radiation went well as far as the radiation...but Chandler and I both had yuckky stomach virus. It only lasted for 24 hours but it was, as they always are, no fun. Chandler missed one day of radiation, but that was OK, we were able to make it up with no problem. Actually, on the day we couldn't go, the machine was having problems so we might not have been able to be radiated anyway. Isn't God so cool like that?
We had an MIBG scan after completing radiation on Wednesday, April 14. The scan was not as good as our oncologist expected it to be. He expected the scan to be fully clear and it was not. However, it did not show any new disease at all. As things stand now, we will begin to continue treatment at home for 6-8 weeks. That means Chandler will have to take Accutane for 14 days on then 14 days off for 6 cycles. Right now my immediate prayer request is that Chandler is able to take the capsules with little difficulty and with no ill side effects! He will begin on Monday, April 19.
Now back to the scan results. The disease that remains is very stubborn and doesn't seem to want to get out of Chandler's bones. It isn't a whole lot left, but the fact that it is still present is a problem. They are going to let Chandler continue to go forward with the accutane just as if his scan was clear but just rescan in 6-8 weeks to see if more (or hopefully ALL) is gone by then. If some disease remains then we have to think of how best to get it out. This could mean more chemo and more radiation. This could mean that we may have to start a new therapy that is only available in Philadelphia or somewhere in Michigan and would require a third bone marrow harvest and transplant! Of course we do not want to do any more of these extreme therapies, but if that is what it takes, we will do it. We do still hope that this remaining disease is just slow moving and by the next scan that it is gone completely! This is not some "pie in the sky " hope. It is very real because at our original diagnosis the biopsy was favorable in two areas and not so good in only one area.The doctors are hoping that the remaining disease is dead and just taking a longer time to be removed out of his bones. Neuroblastoma is like that! Slow as molasses sometimes!
Also, I wanted to add here that I am back at Sunset Elementary School with fifth graders! I have been welcomed so warmly by my friends and coworkers. I feel like I've come home to a comfortable pair of shoes that fit "just right." Chandler is staying at our house with the lady who kept the nursery at Trinity. She is beyond wonderful! Chandler loves her! She is even game to try to give his morning medication next week! Please pray that this continues to go well as I want to finish the year at work. We need the money and insurance, but also it is good for me to get back to school to get a respite from "the cancer." My brain needs to think about other things! Hopefully this will make me a better mom and wife as I'm near the end of my rope!(Just ask Jim Mac and Betsy) Ha Ha
Please continue to lift us up....bombard heaven with prayers of healing for Chandler. We could be close to getting a good scan.
In His grip,
Kim
Sunday, April 4, 2004 6:05 AM CDT Good Morning Prayer Partners,
Here is the latest info. on Chandler. I'm glad you stopped in to check on him. Radiation is going well. We have completed 9 "zaps" and have 5 yet to take (Mon, April5-Fri, April 9). So far Chandler does not appear to have suffered any negative side effects from the radiation. He awakes from the anesthesia happy, hungry and ready to watch the Wiggles on Disney channel.Thank you, God! Also, we have gotten three "clear" cultures on Chandler's central line, so they think the infection is gone. I talked to the head of the anesthesia dept. on Friday. The "not cleaning" incident had already been reported by our nurse that day and it was in the PA's file. What wasn't there was the fact that Chandler got a nasty infection and we had to go to the clinic every day for 8 days, take horrible, horrible medicine 5 times a day. I alo reminded the Dept. Head that we were only out of the hospital for 3 1/2 weeks from a transplant when she did this! I know the doctor could see the seriousness of my words. She was sufficiently scared and said it would absolutely never happen to another child. Let's hope so.
We also have a date of our next MIBG scan...it is Wednesday, April 14! The purpose of this scan is to see if there are any additional places that need radiation. At the last scan there was spot in Chandler's arm that had some activity, but the docs thought this was probably an area of healing not an area of cancer growing....but they must be sure, hence the scan. Please, please please pray that the scan reveals only fading cancer and soon maybe we will get the scan we've been waiting for... the one where they can't see any evidence of disease at all. I am ready to hear those words!
I also want to explain here so that all of you who read about Chandler will understand why it is so hard to answer that question of "How's he doin'?" This disease is soooo sneaky and tricky. I know of a couple of neuroblastoma kids who got "clear" scans in one month and were in heaven two months later. I do know that each time we get a clear scan that it is good, but that is no promise for tomorrow. I do not want to seem pessimistic....I'm not...I am an optimist, but I have to steel myself for what this disease can "dish out." So please understand that we need your prayers for many, many years to come. Every scan he has for the next 10 years will be important. Every illness or fever will send us into a frenzy of fear and anxiety. This disease just won't leave its victims alone. But we also have all of you prayer warriors interceding on Chandler's behalf and we know that God does have the power over this disease and all others. We just pray that it is His perfect plan to allow Chandler to be a preschooler, an elementary student, a crazy middle schooler, a teen and a grown man.
Many of you have noticed that I have used the term."Pray Me Through" this or "Pray Me Through" that...well that all comes from the musical that our Minister of music at Trinity selected for the Easter Special. Well, our choir will be performing it tonight at 7:00 (April4) I listened to rehearsal yesterday and it was fabulous!!!! It highlights the importance of prayer and has very moving words and visuals. If you can I invite you to Trinity Baptist tonight at 7pm for a musical that you will go home humming the songs and a renewed sense of how important your prayers are for you and for others. You will get a blessing! I hope you will come.
We will drive back up to Atlanta very late tonight (because I'm staying to hear the musical) and will be back at Egleston before the sun comes up. I know I will be needing a nap Monday afternoon! We will continue with this hopefully last week of radiation and then I hope to go to work Monday and maybe Tuesday. Get injected with the "contrast" on Tuesday afternoon, get scanned on Wednesday and then drive home to maybe work on Thursday and Friday. Then hopefully we will not have to go back to Atlanta until school is out. I would love to be able to finish the year! Add that to my prayer requests too, please!
Let me start getting ready for the "Sunday routine" around here...packing loading....and getting ready for Sunday school!
In His hands,
Kim
Saturday, March 27, 2004 11:51 PM CST Hi Prayer Warriors,
I apologize for not updating...but this week has been a blur of activity! To start the week, Monday morning (22nd) my dad called to tell us that my Aunt Karen(Uncle Wade's wife) had gotten a lung transplant during the night and was at Emory in ICU recovering! WOW! She is only about 55, but had COPD and was on O2 nearly all the time. Currently, she is in a regular room and doing well. Isn't God amazing? We humbly thank Him for allowing this miracle to take place. She had been waiting for about 18 months.
We drove to Atlanta on Monday afternoon. We met my parents at the "garage apt." and Mama's arm was in a sling! She had fallen at home Monday morning and had an appt. to see her orthopaedist on Wed. Turns out her elbow is broken and he said to keep doing like she was...using the sling. It did not require a cast (She says she couldn't have a cast because of her bridge games and water aerobics.) We are so glad that it did not mess up any of those screws or the plate that is still in her arm from the wreck 5 years ago! Again, Thank you, God for protecting her. It could've been so much worse!
Radiation is going well except for one "hitch." On the first day, the anesthesia PA was giving Chandler some anti-nausea medicine in his line and before I could stop her, she had given it without cleaning the end of his line with alcohol! This is a HUGE, HUGE NO-NO!!!! The end of his line is always contaminated with many, many nasty germs and pushing anything into it without cleaning it is almost guaranteed to send all those awful germs right into his bloodstream, causing an infection. Guess what...we DO have a completely avoidable infection as I type this. They are doing everthing they can to sterilize the line and protect Chandler from the infection! Had this happened only 3-4 weeks ago this most certainly would have killed him. Thank God if it had to happen (which it most certainly didn't) at least Chandler has some white cells on board to fight it. I'm sure some of you are wondering what we are going to do about this. Let me say only that I am sure that PA will never think of not cleaning a line again. It will get taken care of.
The plan for this week is to go back to Atlanta on Sunday to be at Egleston early Monday(the 29th) to resume radiation. We will go daily and take 5 more treatments this week. By Friday, we will have done 9 with only 5 to go! So far Chandler has done remarkably well. Each day I think he understands the routine a little better. Outside of the afore mentioned infection, we have had no problems. We praise God for this therapy being available.
Betsy is on Spring Break this week so she will be accompanying me this week. I'm glad she will get to be involved and be with us. She has been such a little "trooper" but she is wearing thin (as we all are). She is remarkable to have been without a Mom so much this year. I pray for some normalcy soon!
Keep those prayers a comin'!
In His hands,
Kim
Wednesday, March 17, 2004 1:51 PM CST One new beautiful photo added! Please check the photo gallery and scroll down to the third one. Thank you David Craft and Donna Griffin for permission to put on this site! I love it!
Hi Prayer Warriors,
What a day we had yesterday! We arrived at Egleston at 6am for the simulation (The planning that they do prior to radiation). The nurse came to us about 6:45 and said that simulator was not working and we should go home. When I told her home was 4 hours away she reconsidered. Four hours later, we were being simulated.
The procedure was about 45 minutes long and Chandler tolerated the anesthesia well. (Thank you, Lord.) I was especially glad to hear what Dr. Marcus thought about last week's MIBG scan as well as the others.
In a nut shell, this is where we are: Chandler still has cancer in his head and possibly some in his abdomen(the orginal tumor site).Dr. Marcus is very confidant that his radiation will obliterate any remaining cancer that is at either of these two sites. He says that IF Chandler relapses, it will not be at either of these places.(Thank you, Jesus.) However, if there is some "renegade" cancer cell somewhere else in Chandler's body, the radiation will have no effect as it it is so precise.
That is why Chandler will take a drug, cis-retinoic acid, for 6 months after radiation. It is specifically to protect Chandler from one of these "renegade" cells that could have escaped the chemo. So basically, we must hope and pray that the only place that cancer remains is at these two sites that will be radiated. Since they do not stand a chance against the radiation.
The doctors do think that Chandler is cancer free outside of these two places, but they really do not know. We will continue to be rescanned and rescanned and rescanned for a very long time. Basically until we are 10 years out of this, can we then exhale and breathe a huge sigh of relief.
I have tried to explain this as well(and as short) as possible. I know I can get pretty wordy sometimes. Thank you for all the uplifting messages left here for us. To quote my friend and fellow cancer Mom , LeighAnn,"Thank you God for another day." I hope for lots and lots of tomorrows!
In His hands,
Kim
P.S. Radiation begins Tuesday, March 23 and goes through April 9, Monday-Friday.
Saturday, March 13, 2004 8:25 AM CST Hi Prayer Warriors,
Sorry for the delay in updating, but I waited to hear all radiology reports before I tried to explain what happens next. Here goes: Chandler had three scans last week, a bone scan, a CT, and an MIBG scan. The docs use all three scans to decide what to do next. Right now they are sure that there is still active disease in Chandler's head. There were some other places of interest , but those are hopefully, places of healing. All places, including his head, are all reduced in size and intensity! This is a real praise, this indicates the chemo is effective...chemo continues to kill cancer months after being introduced.
Dr. Marcus, the radiation oncologist, will look at all of Chandler's scans and decide if any places besides his head and the original tumor site will require radiation. (We have known that those would both require radiation since diagnosis.) Hopefully, he will agree with our oncologist that they are just places of healing and will not need to be radiated.
Once the radiation is done Chandler will be rescanned in two or three months to see how effective the radiation was in erradicating the remaining cancer. Of course we hope that we will then finally get the clear scans that we have prayed for so earnestly.
I asked Dr. George if we had a "hopeless situation" and he quickly responded, "Absolutely not. Of course we would like to have clear scans at this point, and sometimes that happens, but more often that is not the case." We just are not finished with treatment and the cancer is not quite finished scaring the willies out of us either.
Please pray for continued hearing protection and clearing scans every day. Hopefully, Chandler will tolerate the radiation and the being sedated every day too. We will go Monday evening to be ready for simulation and radiating on Tuesday early morning.
I am trying to hold on to my faith that God will heal Chandler. Please "Pray Me Through" these periods of fear and doubt.
IN His hands where I have to stay,
Kim
Friday, March 5, 2004 10:45 PM CST Good Evening Prayer Warriors,
Very well meaning people have asked a lot lately, "How is Chandler?" I know they care and want to know, as do I, how he is. But frankly, I really have not known the answer to that question. You see, on the outside he is bald, but fat, tall, and healthy looking. He has pretty good color (I'm as white as he is from being in a hospital for two straight months and my blood is normal.) I haven't really known "How he is until today....today he was scanned, And thanks to God's healing hand we got the news we were looking for. Since diagnosis we have never had a clear scan. We had had significant reduction, but never clear. So keep reading the updates and finding out "How he is." We are two grateful parents tonight. Thank you, Lord.
Even though it is late, I was compelled to update the web page tonight. It is nearly midnight Friday evening and Chandler and I have just returned home from the bone scan in Atlanta, by way of visiting my grandmother in Fitzgerald.
Well guys, the news is great! Not just great,it's greater than great (I sound like that commercial for direct TV with Andy Garcia.) It is truly just sinking in that the technician performing Chandler's scan today saw no disease. I have not talked with our oncologist yet, but Laura, the precious, precious technician who has done all of Chandler's scans was quite pleased with what she did NOT see. All of the prayers that have been said on our behalf are being heard! Being heard by a truly blessed healing Lord Jesus!
My 80 year old grandmother loved getting to see Chandler "point his finger and do the twist and stand on one foot and shake his hand" (This is a Wiggles song that Chandler loves to dance to.) He charmed everyone at Scottish today too. We were so glad to visit with some of our former nurses...Jody, Joy, Alison,Kathy and others.(I can't recall everyone...it is so late and my brain stopped working about 5pm today.) A special "congrats and best wishes to Alison, our 'Bulldog Buddy' for getting engaged and passing her boards to get her RN! WooooHooo! You have been busy since we left Scottish! Your fiance' is lucky to get such a catch!
Exhaustion has set in. More tests next week. We plan to go back to the garage apartment on Monday evening in order to be back at Scottish very early Tuesday morning for a CT scan and back again on Wednesday morning for the MIBG scan (that one is unique to neuroblastoma.) Today was a milestone, but I am most anxious about the MIBG scan. Please keep on "Praying Us Through."
In His hands and my OWN bed,
Kim
Wednesday, March 3, 2004 11:52 AM CST Hi Prayer Warriors!
Monday's check up at the clinic was uneventful....we like uneventful! Papa went with us and then Meme met us for lunch in Macon on the way home. Counts are still going up slowly, but as long as they are going upward, that is a good thing. I talked to Mama Duck last night and she said it is not uncommon for children to need transfusions for months following tandem transplants. We haven't had a transfusion since we were at the hospital!(Do you see why I like talking to Mama Duck?...she is so knowledgeable and always puts a positive spin on things.) We are so glad that God continues to protect Chandler.
Chandler continues to seem so good. He is eating, playing, running around, and reading books. His hearing seems intact so far. He repeats everything that is said! Please continue to ask for hearing protection for Chandler.
It has been so good to be home for a while. I have started to feel a little bit normal. If we could just get clear scans next week I think I could relax even more. While I'm asking for prayer requests, please pray that Chandler's scans...the bone scan...the CT scan...and the MIBG scan will all be clear, clear, clear! We pray that not even one microscopic cell remains. We hope radiation is only for insurance....not treatment!
I will close with a favorite scripture, "Because he loves me," says the Lord, "I will rescue him; I will protect him for he acknowledges my name. He will call upon me and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation." Psalms 91:14-15
I hang on to this when I can't hang anymore!
In His hands,
Kim
Wednesday, February 25, 2004 7:24 AM CST Hi Friends and Prayer Partners,
So long for the delay in updating. It is always harder to update at home than when in the hospital. My apologies.
We went to Egleston Monday. My good friend Malinda went with me. I know my parents were so glad to have someone else accompany me. In the 8 hours we spent in the car, you can imagine Malinda had time to really get "caught up." She was so generous to give me her time. I actually looked forward to going instead of dreading it.
The appointment went well. So well in fact that the Bone Marrow Transplant docs have now "given us back" to our regular oncologist at Scottish. The transplant docs do not have to see us again. Yippee!!! We really liked them a lot, but it is nice to know that the transplant is now "officially over" and hopefully Chandler is ready enter the next phase of treatment....radiation.
Right now I am unsure of when that is to begin. In his paperwork, it stated that radiation was to start on Monday, March 1, but right now there is no appointment set up, so I am in a flux. Anyone who has ever had to deal with so many doctors....on three different campuses(Scottish, Egleston and Emory) knows what I am talking about. It is the classic,"the left hand doesn't know what the right hand is doing." It gets old in a hurry. I try to call, confirm, ask questions, etc. but I always worry about other children whose parents do not know to question or coordinate. What happens to them? I always wonder if they get the treatment that they need, when they need it most. Oh well, I have always heard that God looks after those who can't for themselves.
This weekend I got the news that TWO of our transplant buddies have gone to be with God since we left Egleston. You really get attached to folks who are going through some of the same things you are. One little girl was 5, her name is Precious and the other one was 18 and his name is Kerry. They were transplanted the same week as Chandler's first transplant in December. They both had complications from the transplant. I pray that both of them are painfree and at the hand of God. I am so filled with sorrow for their families. They were special to us.
Chandler continues to eat, play and love being with Betsy. Thank you for all the prayers you have said for us. A bone scan will be next Friday, March 5 and the MIBG scan will be the following Wednesday. (That is the one that is specifically for neuroblastoma.)I am the most afraid of the results of that one! It will confirm the presence or ABSENCE of all cancer. Of course we ask you to pray for perfectly CLEAR scans!
In His hands,
Kim
Thursday, February 19, 2004 1:56 PM CST Hi Prayer Warriors,
Yeah!! Chandler got a good report on Wed. at the clinic an we are in Moultrie as I type this. This will be a short update however, as I am trying to get my house"back like I left it"...if you know what I mean. Leaving JimMac and Betsy is hard...but coming home is hard work too! Ha Ha but I'm glad to be here doing it.
We go back to the clinic on Monday for another check up and I'm not sure what comes after that. It is in the works for us to begin radiation on Mon., March 1 so we hope that stays on schedule and we are able to be done in a month or so.
I have so many blessings to address, but time is precious. The dryer calls...
In His hands,
Kim
Tuesday, February 17, 2004 4:11 PM CST Good Afternoon Prayer Warriors,
We left Egleston on Monday morning..and are at the Noonan's Garage apartment.Hip Hip Hooray! I need to acknowledge the wonderful care Chandler received there. The transplant docs, Dr. Ann Haight and Dr. KY Chiang and their Nurse Practioner, Ellen Olsen are superb.Dr. Hal Crosswell is so great too. We felt very taken care of by the excellent and knowledgeable nursing staff. I have oft mentioned Mama Duck but the others are so good too. Olivia, Colin, Rebekah,Nancy, Kathy, Christina,Courteney, Karen, Jennifer (PC), Pamela, Ellen,and of course the famous, Mildred all helped us through some pretty scary times. A mere thank you seems so inadequate. It is so much more than a job for these special women. Each has a gift for making difficult times better, especially the ones at NIGHT!!!! Speaking for all the parents who make Egleston a "home away from home", just know how appreciated you all are...Denene, Miss Juanita, Stacey, Mark, and all the rest. I'm sure I have forgotten someone( you always run that risk when you name folks),you all are terrific. I also appreciate Becky Lavender for penning a note for me to go to the ER at DeKalb Med. Ctr.
We are due to get checked out in the clinic tomorrow. Hopefully, Chandler will be "good" enough not to need another transfusion and good enough to actually go to Moultrie until next week. I can hope,can't I?
This morning Chandler ASKED for a bottle, for the first time in two weeks. He also ate oatmeal! Wow! I am so glad for him to get his appetite back. He isn't 100 et, but he is well on his way. Thank you, Lord.
Thanks Louise and Sophie for taking such good care of Betsy this weekend. I hope this is the last weekend we have to be separated. This has to have been tough on an 8 year old, but she has managed to get along well because of good friends and family.
Hoping for a good report in the morning at the clinic.
In His hands,
Kim
Sunday, February 15, 2004 7:17 PM CST Hi Prayer Warriors!
Chandler is DEFINATELY doing well. We already have the
"go ahead" that we are going to the garage apartment in the morning. Jim Mac and I have already partly packed the car! We actually could have probably begged to go today, but being Sunday and it might be difficult to get Rx filled, and the clinic is closed so we would have to go to the ER if something went wrong so we thought it was a good idea for one more night here. Better to be safe than sorry. Plus I would feel terrible if we rushed Chandler home before he was completely ready just because I was ready to sleep in a real bed.
Chandler is finally acting like himself after a grumpy day. He is slow, slow to start eating again. He's not had a whole lot to eat , but he is drinking so they say the eating will come soon. I sure hope so.
I am so very glad that Jim Mac gets one more day here with us, thanks to President's Day Holiday. It will make the move to the apt. much easier with his help. Meme and Papa also get another day home, which I'm sure they think is terrific. They are here so much that they don't have time to maintain their household! We sure do appreciate their help.
The plan is to begin radiation on March 1, as long as his blood counts are good enough. We do not have it finalized on how many treatments he will receive, but it will probably be 12-14. We also will soon have scans to see what the transplant accomplished. Please pray that they are clear as a bell and remain that way for the rest of Chandler's life. Relapsed Neuroblastoma is NOT good.
Please continue to pray for all the folks we will be leaving tomorrow, including Stephanie Hill, the second grader from Sunset School in Moultrie (where I teach and where Betsy goes) who has AML, a kind of leukemia. She was just diagnosed on Thursday and has already started chemo. Her family needs lots of prayer and support. She is strong and beautiful and has a great attitude.
Still in His hands,
Kim
Friday, February 13, 2004 10:58 AM CST Good Morning Everyone,
Today is day+11 and Chandler is doing well. We had a pretty good night...a few bouts of vomiting...but overall, he got some rest, therefore I did as well. Jim Mac is on the way up here, Mama Duck is our nurse, and Chandler's white count is marching upward!!!WoooooHoooo! Thank you, Jesus!
They are still saying we are looking at being dismissed early in the week. We will be at the garage apartment until we don't have clinic visits, which may be until radiation starts. In any case, we get a break from the hospital, as nice as they are...it is still a hospital!
I have some some super nice treats this transplant. This week, Sala Rhodes visited, Andrea Stanfield came and brought homemade delicious Valentine cookies and a cool crazy cup straw for Chandler. Jessica Smith and Laurie McDaniel drove over from Athens to see us! They did not come empty-handed either...they brought Chandler a Wiggles video, which he loved, and me a HUGE piece of cheesecake from "The Cheesecake Factory"(Yum) and more Valentine cookies.( these people know me well...bringing sweet foods) All of the cookies are gone! Thank you so much to these wonderful supporters for taking time to visit. It surely makes the time go by faster!
Hope everyone has a nice time enjoying Valentines Day tomorrow. I'm so glad my valentine is coming up here today and he gets an extra day...thanks George and Abe!
Thanks for checking on and praying for Carter (see link below), McKenzie and others fighting for their lives. We absolutely can not do it alone. Aren't we glad we have God?
In His hands,
Kim
Thursday, February 12, 2004 10:07 AM CST Dear Prayer Warriors,
Today is day 10 and white counts are still moving up. Chandler did NOT require any sort of transfusion (as I had expected) today...so another prayer answered. They are looking ahead to the big "d" word (discharge) that may come early next week..Hooray! Of course we will not go home to Moultrie, we will go to the local garage apartment, but hey, that is much better than being inpatient....midnight and 4:00am blood pressure checks...syringe pumps alarming all night...you get the picture.
We now look ahead to the next phase of treatment...radiation. As I have said here before, we will be able to have conventional radiation as opposed to the proton beam radiation. This means we will come to Emory each morning,be sedated, get zapped, and come back the next day and do it again. They think we will do this for two and a half weeks, no weekends, and then we will take a medicine by mouth for 6 months and then....we will be done. I can't believe we are reaching this part of treatment!
Of course we will have scans following this transplant...we haven't had a scan since Nov.! I am terrified that we could still have neuroblastoma hanging around. Please pray for me that I can shake this fear and let God have it. He can handle it, I can't.
Thanks to everyone who reads our updates. If you have a chance in the upcoming days, please leave us a post on the guestbook. As many of you know, your words are a source of strength for me and I plan to print and bind them all in a keepsake book for Chandler for him to read for himself one day. I would like as many different folks who have prayed for us to be in it.
In His hands,
Kim
Please do check on Carter and McKenzie!
Wednesday, February 11, 2004 5:51 AM CST Good Morning Prayer Warriors,
My friends, you must really be burning up the lines to heaven, because Chandler continues to recover from this transplant in a mighty way!! Praise God from whom all blessings flow! This morning I anxiously awaited blood counts that were taken during the night. Last night I had looked at my notes from the first transplant, comparing day +8 this time to the last day+8. They were strikingly similar. Based on last time, I had prayed for a similar boost on day +9 (which is today) and my prayers were answered! For my cancer mommy friends, we still don't have an ANC, but his white count went from .16 to .48....yeah (normal is 7.0 to 11.0). We still have a long way to recover, but we are most definately going in the right direction.
Chandler still isn't up yet (it is 7am) so I hope his demeanor will reflect this improvement. The last few days he has been pretty grumpy...everything is "No" and "No" and "Noooooooo". Last night we could tell he did feel some better though. Thankfully, I have had good nurses the last couple of nights who have let me rest more.
Our favorite nurse, Mama Duck, told us on Sunday night when she left that she bet Chandler would have some pretty good counts by the time she worked again on Friday...I'm so glad that I think she is correct! Speaking of Mama Duck, this is a story that I have not related yet, and it is too cute not to tell it. Saturday had not been the best day for Chandler. He'd really acted like he felt horrible. About 6pm Mama Duck came in to check on Chandler. He put his arms out for her to take him. Which she gladly did. She sat down to read The Very Quiet Cricket (for the millionth time) to him. On the next to the last page, they called for Mama Duck over the intercom....another child's pump was beeping. She told Chandler that she needed to go see about another little boy. He looked her squarely in the face and said his very first sentence..."NO, Duck read." That was the end of that...she told me to ask another nurse to see about that beeping pump! It was precious!!!! We all love Mama Duck. Somehow things seem better when she is around.
I do ask that you please continue to check on Carter Martin at www.caringbridge.org/ga/cartermartin. They appear to be planning another stage of attack on their cancer. I also ask that you get out a box of Kleenex and go to my dear friend Carol Fleming's site. Her baby girl McKenzie just completed her final cancer treatment and her post is so moving that I hope you will take time to read it before she updates again. It is www.caringbridge.org/ga/mckenzief
Again thanks for checking in on us. When I get info. on Stephanie Hill, I will call Mr. Owen. I think there has been some change from yesterday.
We appreciate all of you for "Praying us Through" this scary time. Radiation will soon be coming....new scares and new prayers! Indeed I am.....
In His hands,
Kim
Tuesday, February 10, 2004 11:30 AM CST Good Morning fellow Prayer Warriors,
This is day 8 of the transplant and Chandler is progressing at or better than expected. Yeah!!! Today's white count is up as was yesterday's so the cells are engrafting and the Neupogen is doing what it is suppose to do. It is all relative, though. We are many days from being released to go home. It is comforting to think that we may have hit the very lowest point now and are headed in the right direction. God is sooooo good.
For my Sunset friends,a quick update on Stephanie Hill(the second grader in Gail Edward's class)who is next door. She had her bone marrow tested yesterday and her mom told me that the early results appear to be something called "aplastic anemia" (I have no idea of the correct spelling). Her mom said that this is a chronic condition that she will take Rx for the rest of her life. It can be life threatening, but Stephanie does not seem to have the kind that is that serious. Hopefully, she will just have some check ups with the docs here and be able to live normally.
For those who had a chance to pray for Carter Martin, thanks so much! (Don't stop) Thanks Richard and Sophie for writing to them. This has been a scary morning for them, but so far it looks pretty good. Feel free to check out their story at www.caringbridge.org/ga/cartermartin They are a wonderful family and we are richer for having met them.
I had a special treat this morning, Kristin Connor stopped by to see us. Her son Brandon is the two year old who went out to California to have his neuroblastoma tumor removed and it was miraculously GONE!!! They were the ones who were on the front page of the AJC and have a TV special to be aired on PAX channel soon. (I will give out dates and times to watch when I get them.) She knows the Carter family so she was here to lend support and visited us as well. I feel blessed to have met her. Thanks again, Kristin!
Keep praying us through this transplant! I'm ready to see the Colquitt County line soon!
In His hands,
Kim
PS to Traci: I did leave yesterday and got a haircut and a fabulous (expensive) cup of coffee. She scalped me, so I will have to let it grow before WC can fix it!! Its just hair....who cares! :) Thanks for your timely advice. I love you.
Sunday, February 8, 2004 10:17 PM CST Hi everyone,
We have now reached day 7 almost. This weekend we have seen a bit of improvement...thank goodness! Friday had been pretty wretched, but Saturday Jim Mac and I could see a difference. He still throws up bloody mucous, but it is greatly reduced. He can now swallow a little bit. He ate about a fourth of a popsicle this evening, which is so great to see.
The doctor had said not to look for improvement until day 7 to day 10. I hope by the time Chandler gets up Monday morning, he is a new man....ready to start back eating ready to get off some of the morphine. That may be too ambitious, but I can hope.
Tonight there are a few people I'd like to ask for prayer for. These are folks I've met while here. Their names are Kerry Marion, Precious Gamble, Stephanie Hill, Jay Shields, Jatin Patel, Catie Wilkins, Grace Snipes, and especially Carter Martin. Each of these children has a unique and special set of circumstances, but the one common link is that they all could use an extra prayer said on his/her behalf. Each has a family around them that is greiving, worrying, or has some special need that only God can fill. I ask that you speak their name to Our Father in heaven. Blessings are needed by so many. I also ask that we remember MacKenzie Fleming and Family. Their treatment is coming to an end and strangely the end is just about as frightening as the beginning, because we are talking about cancer. It is a sneaky disease and one never knows when or if it will rear its ugly head. Pray for these and others I failed to mention. I love all of you who take the time to read these posts.
In His hands,
Kim
PS If you have a chance, please visit Carter's caringbridge site and read yesterday's and today's journal updates. This family is really "hunkering down" in powerful prayer mode. go to www.caringbridge.org/ga/cartermartin (same as Chandler's...just change the name on the end:)
Saturday, February 7, 2004 4:28 PM CST Good Afternoon Prayer Partners,
So sorry for the delay in updating. Wednesday morning I woke with a sore throat. After waking Dr. Bobby in Moultrie because I was so afraid, I was able to talk to Chandler's transplant doctors. They insisted that I leave his presence, and go have a rapid strep done, along with flu tests and some sort of viral panel...the details of these I will spare you. I was negative for them all, but I followed dr.'s orders and stayed away all day Wed and Thursday. I returned to Chandler's room on Friday morning to find a much sicker little boy than I'd left. I didn't give him anything.....its just that darn chemo. He now has terrible mouth sores and his little cheeks are swollen. He holds THICK saliva in his mouth until he can't hold anymore and then he either throws it up or it gags him coming out. He absolutely can not swallow it. It is streaked with blood and looks awful. I am even more grateful that we avoided all of this last transplant! He has started a very small continuous dose of morphine for the pain, which, thank God does help. Jim Mac has been here since Wednesday evening and boy, has that helped! I hate that he had to miss work, but we really needed him. I will hate to see him go on Sunday.
The doctor says we should start seeing a bit of improvement by Mon or Tuesday. It can't get here fast enough for me. It is so hard to see him like this!
While walking around the nurses station last night, I noticed a little girl wearing a t-shirt with something about Camilla on it. I asked the parents where they were from, they said, Pelham and started to explain where that is. Jim Mac interrupted and said no need to explain...we are from Moultrie! They know Johnny and Gay Radney our friends and neighbors as well as Diane Snellgrove Smith! They are Krys and Ken Snipes and their little 2 yr old has also had a transplant! What a small world!
Speaking of small world, last night I "thought" I saw a former student walking through the hall but when I went out to get a better look, I couldn't find him. Later on, I saw him again...IT WAS one of my former students.... It was Eric and Terrence . For my Sunset buddies, Stephanie Hill who is in Gail's class, is unbelieveably in the next room!!!!! I went over to visit for a second and to tell her mom who I am and Stephanie immediately said, I know who you are....you are Betsy's Mommy! I could not believe the coincidence of meeting someone from Pelham and having someone from Sunset School be in the room next door, both on the same day!!!! I could not wait to get back to the room to call Malinda and Traci to tell them. If I find out how Stephanie is doing, I will gladly keep you guys posted.
I also went to visit the little girl from Valdosta that Karen Kelly told us about. She is upstairs on the "brain" floor. Her daddy, Lee Newsome, is from Moultrie, but I guess you guys probably already knew that from Dana. Any way, she was sweet and very tired of this hospital. Imagine that!
Well, I guess I better go now. I'm sure Jim Mac needs a break! Please keep praying us through this!
In His hands,
Kim
Tuesday, February 3, 2004 3:38 PM CST Good Afternoon Prayer Partners,
Today is now "Day 1" in transplant-speak. Meaning we are one day after the transplant. And let me tell you, it has been one heck of a day!!!! It all actually started developing last night when the heat in the room was out of control. We started noticing it around 6:30, and by 7:30, we were miserable. This continued on until around 10:15...by then we were nauseated...both Chandler and I! We couldn't open a window or the door because of germs. We just sat here and sweated and sweated. I actually was probably a good thing for me, but can you imagine being nauseated from chemo AND being hot on top of that! Chandler had also developed a low grade fever as well. Needless to say, it was tough for him to go to sleep. It was for me as well.
Then Chandler was awakened to a nurse putting Tylenol in his mouth with a syringe. Now I don't know about her or you, but I would find that pretty offensive before 7:00 am and I'm sleeping peacefully! So... we woke too early and in a rotten mood! I told her I would happily get him to take the Tylenol...LATER...if she would just leave the syringe. Which I did.
Of course with all this he was unable to return to that much needed peaceful sleep. Ever since he's had a one word vocabulary..."Mommy". When he finally dozed, I died! Thankfully, he has been some better following his nap.
Chandler has been grumpy, but he is still playing, reading books and watching "The Wiggles". It just is with more irritability than normal.
He is on two antibiotics to cover the low grade fever...they are very careful about preventing as much as possible when they know he is so very susceptible. He is on the pole all the time now, so other than more diarrhea, the antibiotics are a good thing!
We talked to Dr. Marcus, THE SUPREME PEDIATRIC RADIATION ONCOLOGIST today. He reviewed Chandler's CT scans and was happy to report that Chandler will NOT need the Proton Beam Radiation. Our regular oncologist had suggested that we might be a candidate thus we had prayed that IF it be the very best therapy for Chandler, that we would be accepted. Dr. Marcus is , thankfully, quite happy to report that we have a very easy tumor to work with. The placement is perfect for conventional radiation and frankly, he said we need very little,comparatively speaking. As our oncologist told us before, the residual matter in his skull could already be just dead cells...radiation will just insure that they are indeed dead and gone! He was completely confident that Chandler's brain will be spared by OVER 99% and it would be that with Proton beam. There should be no intellectual loss at all. Praise God! Somebody (actually a lot of "somebodies") prayed us through that one! Now if we can just get over this permanent hearing loss stuff, we might just lick this thing and lead a completely normal life once this is all said and done.
All of you are so generous with your time to check this web site and to really pray on our behalf. It matters more than I can explain in words. It is a supernatural feeling to know so many lift us up each day for total healing and protection from all that can go wrong. God has this all already worked out...I must be patient to see what unfolds and how we as a family will be changed for the better because of it. Thank you from the very depths of my heart. It isn't easy, but we couldn't do it without God.
In His hands,
Kim
Monday, February 2, 2004 4:48 PM CST Prayer Warriors,
Today is Day 0...transplant day. It was at 11:00 and was very similar to the last transplant. A touch of nausea right when the cells were going in then, it rapidly got better. Thank our Lord above! I just don't know if I could've taken something going wrong. Today has been extraordinarily hard. I do not know why...well I do know...but why today more than any other? I have faith that God will deliver our whole family through this transplant and all that can come along with it. He will sustain me. Period.
He had a good afternnon nap and has sortof eaten a little bit...not a lot..but something is certainly better than nothing. Sofar the mouth sores are staying away but they come when his counts are low and that is starting . Keep those prayers of protection going strong as they are especially needed now and in the coming weeks. He has just asked for a bottle of milk, but it must not taste right because even though he nearly snatched it from my grasp, when it hit his lips, he lost interest. It is so hard to watch.
Meme and Papa are staying strong through this yukky time. Please say prayers for them as they watch not only a grandson fight for his very life, but they have to put up with a daughter who is riding the scariest rollercoaster of emotions.
In HIs hands,
Kim
PS Happy Birthday, Cuz Mike! We love you!
Friday, January 30, 2004 8:04 PM CST Hello Supporters!
We are now day -3 (three days to the transplant)and Chandler has had what I would consider an AWESOME day. There must have been some super, duper prayers being said for him today. He finished the very last chemo that he should ever, ever need this afternoon. He drank enough Gatorade that the doctor allowed him to get off the IV pole for a few hours!!!!! Hurrah!!!This allowed him to run around the room and play completely unincumbered. He took a super powernap and then waited for Jim Mac to arrive. He ate more supper than he's had in two days (and completely kept it down) and has generally been delightful.
We got a great visit from Uncle Wade and Aunt Kay today...they were here to see him get unhooked from his final chemo bag. Aunt Kay had to see her Dr. at Emory and got a good report.So they were able to come see us...what a treat!
Please keep lifting us in prayer. It makes all the difference in the world for us. We love and appreciate all who read about our saga and are "Praying Us Through".
In His hands,
Kim
Thursday, January 29, 2004 4:29 PM CST Good Afternoon my Prayer Partners,
Today is day -4 (meaning four days until transplant) for Chandler. Of the 96 hours of chemo, we have only about 18 more hours to go!!!! Hallaleuh!!!! Chandler is still tolerating it pretty well. He seems in good spirits, but he has vomited while trying to eat. I think I might have too though, considering he ate sliced cheese , dill pickle slices, cheetos and sweetened tea together. Yick! Gag! Any way, it seemed to be a "non-event" for him as soon as it was out he was asking to eat again...of course, we did not let him. Mama Jane, we need some of your and Miss Ruth's Baptist bird! Ha ha ha.
This morning the doctor had a resident(doctor in training) with her. After examining Chandler, the doctor told the resident, "This is not normal behavior for the fourth day of high dose chemo." I always like it when she says things like that. We know that the hard days are still to come during this transplant, but it is so encouraging to hear remarks by the doctors like that.
Jim Mac will be coming on Friday and I look so forward to seeing him AND getting a full night's rest(he gets up with Chandler when he's here, God love him.) Plus Chandler will let Jim Mac do things that he won't let Meme and Papa. They want to do more, but often Chandler just won't have it. Again, I am anxious for him to come.
Please continue to pray that this chemo is taking care of any residual cancer cells that might be in hiding somewhere in his little body. As always, we want the chemo to do as it should but spare Chandler's body from the wretched side effects...hearing loss, mouth sores, mucousitis, blistered GI tract, kidney damage, etc. Please pray that Chandler stays strong through this transplant and experiences NO infections or further complications!!! 'Reckon that's a tall enough order? God can fill it and then have some to spare!
In HIs hands,
Kim
Wednesday, January 28, 2004 9:15 AM CST Good Morning Prayer Warriors,
Today is day -5 for Chandler in "transplant talk" or for us mere mortals, our third day of being here. He is still handling the chemo so far but his lab numbers are plummeting! The chemo is definately taking its toll, but that is what it is supposed to do....we just pray that the neuroblastoma doesn't have a chance against it.
Chandler is still eating and drinking, but of course, as before, we worry about the condition of his little GI tract. We know that soon it will be blistered and full of mucous. I still ask that you pray for protection for Chandler's mouth and all the way down to his hiney! I dread being placed back on the liquid nutrition. I dread so much of what can happen.
He will continue his 96 hour chemo odyssey until around 9:00am Friday morning. He has so many lines connected to him that they are becoming a tangled jumbled mess. It seems that each time he moves, one of them becomes crimped and thus the machine beeps. This morning between 6am and 8am, I nearly went crazy getting up to stop the beeping, trying to uncrimp the line and then doze back to sleep only to hear it sound again. UUUUGGGGHHH! Needless to say, I have begged for them to unhook him long enough to try to untangle the mess. (If they had to hear it beep as much as I have there would be no question!)
Please bathe Chandler in protective prayers in the coming days...it is just about to get really hard. But it is the best treatment going and we just have to have faith that God is here working in room 357.
In His hands,
Kim
Monday, January 26, 2004 3:08 PM CST Prayer Supporters and Friends,
We arrived at Egleston this morning, just as scheduled. The chemo this time will run for 96 hours straight. We always are constantly attached to an IV pole, but usually it is mostly fluid running, and the chemo only lasting 6 hours or so per day. This is 4 straight days of it!!!
Please, please, please remember us duing these next few weeks! He did so well last time, it almost is harder this time because if he doesn't do as well, it seems all the more disappointing, if that makes any sense at all.So many of the people we met during our last transplant are still here. And several are not doing well(hence, that's why they haven't gone home). It is very sobering to talk with these family members and see the weariness and pain in their eyes. I am all the more grateful for the time we had at home.
I got a surprise visit from an old friend today. Sala Rhodes "popped" in unexpectedly and I did not even recognize her! She looked the same, but I was awakeneing from a nap and thought she was a new Resident coming to see Chandler! She was delightful and said she would try to come back to see us again. I hope so. I welcome visits from friends.
Chandler seems to be doing his normal routine...playing, singing, dancing, giving everybody a "thumbs up" and is generally charming everyone. His new obsession is "The Wiggles" but we did watch "Nemo" one time while riding up here yesterday. And Buzz Lightyear is still pretty cool.
The nurses and doctors have all remarked that he is talking more clearly and has grown taller since we were here last. He was also heavier...13 kg. So so far the chemo has not slowed him one bit. I can't wait for Mama Duck to see him.
I have asked before and ask again for everyone to "Pray us Through" this transplant. Prayer is part of his healing more than anything else.
In His hands,
Kim
Friday, January 23, 2004 9:43 AM CST Good Morning all you precious Prayer Warriors,
As many of you know, Jim Mac and I have been worried about if our insurance will cover the "Proton Beam Radiation" in Boston. It is very expensive , one of the newest treatments out there and not in Georgia. All of these made it be a question as to if they would pay. Well, after many many prayers, our case worker called this morning to say that it IS covered! Praise God from whom all blessings flow!
This was such a worry for us. Now, we hope the hospital will approve us. They only take about half the applicants. But with our insurance paying, I feel God is opening the door to reveal even more blessings. I do not think He has given us this, to close another door by not finding a way for us to be accepted! God's handiwork is so, so, so sweet!
We are to ride back to Atlanta Sunday afternnon in order to be hooked back up to an IV pole Monday morning at 9:00 for chemotherapy. Please pray that this chemo is effective against the neuroblastoma and will completely spare his hearing and all other organs. Please pray that Chandler tolerates another month in the hospital as well as before. He will be "transplanted" again on Groundhog Day, Feb.2. That is my cousin's birthday, so Chandler and he will share a birthday now!!!
Thanks for all the loving prayers being so unselfishly prayed on our behalf. Yesterday our church's deacon chairman called to tell me that he was listening to the new CD that they will be singing at Easter. It is titled, "Somebody's Praying Me Through" A Celebration of God's Power Through Praying People. It is like the songs are for our family! I can't listen without crying!
In His hands,
Kim
Tuesday, January 20, 2004 1:23 PM CST Howdy Prayer Warriors,
Chandler and I have enjoyed some very much needed time away from the hospital. We went to a check up on Friday and got a good report. They were so pleased that we do not have to come back in this week...we can just wait until Monday Jan.26. That is the day we start transplant#2.(That is a good omen since it is my best friend's birthday.) Seriously, we are so grateful to God for Him protecting Chandler from infection while we've been home.
Meme and Papa took Betsy and me to see "Annie" at the Fox on Friday night while Jim Mac kept Chandler at the garage apartment. It was fabulous! Betsy loved looking at the theater itself as well as the musical. We went up to the loge and into the ladies "lounge." Everything is so ornate. She was fully convinced that the building was 500 years old!
Then Saturday morning we left the garage apartment and drove 6 hours to St. George Island to be with our great friends, the Odom's. They treated us to the most relaxing vacation I've had in a very long time. They even managed to have sunshiny 80 degree days for us! I kept reminding myself that it is still January! It was great! Thanks, WayneO, SabO, and IvyO! Y'all were great! I think Chandler enjoyed having Ivy most of all. I think he is in love!!! I can't think of a sweeter girl for him to be crazy about!
I talked to Carol Fleming(McKenzie's Mom) in Boston this morning. They are there getting proton beam radiation. McKenzie got a viral infection (RSV) this weekend. Carol says she is OK, but just please pray that this is nothing and they can get on with their treatments and come on home. They are about halfway done and want to come home as soon as possible. Also, please pray that this is effective against McKenzie's rhabdomyosarcoma.
My prayer requests are that Chandler continues to stay infection free and that we get the "green light" to go to Boston for radiation too. From what I have read, it really seems like the thing to do to protect Chandler's brain. Again, I put it in God's hands and I know He will guide us to do the correct thing. He certainly has lead us thus far!!
Thanks for the continued prayers!
In His hands,
Kim
Thursday, January 8, 2004 8:54 AM CST Hi Prayer Warriors,
The Booths are enjoying some much needed time in Moultrie together! Praise Him! We are glad to be at home for even a few days! The plan now is to return to Egleston for quick check up on Friday, Jan. 16 and if all is as they expect, we will begin the second transplant on Tuesday, Jan. 20. Chandler will take chemo that week and then they will give him his own cells back on Jan 27. They call this a rebirth. Please pray for protection for Chandler at home that he does not get sick or have any complications that would hinder the onset of the second transplant. Also, pray now for protection from the many wretched side effects that come from taking these huge doses of chemo.
As many of you know, Chandler did very, very well through his first transplant and we give God the credit fully for protecting his 18 month old body from all that could have happened( I shudder to think of all that can happen). However, we still have another transplant to live through and this time the drugs are completely different. One is bad on hearing, and the other is notorious for causing bad mouth sores(Chandler avoided those last time). Please pray that God will continue to mercifully protect Chandler from all that can happen! Also pray that the chemo absolutely rids his body of all cancer cells and that once the radiation therapy is over, that Chandler will never require any sort of cancer treatment ever again.
Also, I want to thank all of you who are so faithful to check this web site for updates! I am not very good at updating when I'm home...there's too much to do!
In His hands,
Kim
Saturday, January 3, 2004 10:59 AM CST Hi Prayer Warriors,
The Booth's have enjoyed some very much needed rest in Moultrie! We arrived home Monday evening(29th). We went to Uncle Chip's and Aunt Amber's house in Albany to ring in the new year with family Wednesday night. It was so nice to get out of the house!!!
Chandler continues to do so well. Betsy has been such a help to play with Chandler....she is making up for lost time I think. We will miss her next month during transplant #2. He adores her!
We plan to go back to the garage apt. on Sunday afternoon in order to be at Egleston at 9:30 Monday morning. They will check his blood and will hopefully tell us when we will begin the second transplant. As much as I am dreading it, I am sorta ready to "get it over with". I do ask for you prayer warriors to lift Chandler up even before we go back. Everytime we take chemo, there are so many risks...infection...nausea...mouth sores...uncontrolled bleeding...the list goes on, but God has blessed us so many, many times and protected Chandler.
Thanks for all the well wishes left here and by mail. Also, we need to especially thank the Adult 4 Sunday School class at FBC Moultrie for including our family in this year's auction. More updates later as we find out what comes next for us.
Happy New Year,
Kim
Sunday, December 28, 2003 9:09 AM CST Good Morning Prayer Partners,
And it IS a good morning for the Booth Family. I finally got internet access on Uncle Chip's computer at the garage apartment this morning. Betsy and Chandler are watching "the Wiggles" on tape for the 99th time and Jim Mac is snoozing whileI read all the super messages left by our supporters. You all are so uplifting! Thanks!
We went to the doctor for our first post-transplant check up on Friday. They had told me to expect to need platelets for sure, but also that we might need some red cells as well. Well, Chandler was true to form and amazed the doctors once again...he did not need either!!!! His white cells, red cells, and platelets were all higher than when we left the hospital, meaning that Chandler is now making his own cells and given time, he will be back to normal.Isn't God faithful? He promises and delivers mightily.
Meme, Papa, Uncle Chip, Aunt Amber, Jim Mac, Betsy,Chandler, and I all had a great Christmas together at "the garagemahall". Kim (Pace) and her hubby Tom Noonan have been so wonderful to allow us to use their garage apt. ever since diagnosis in July. Their generousity astounds me! Thanks again, Kim and Tom!
Christmas is already such a special time, but Christmas 2003 is extra special for us. This is the Christmas of healing for Chandler and many others fighting for their lives! Next month (don't have a date, yet) we will go back to Egleston for "transplant #2. This time Chandler will take 2 other drugs...one of which is hard on the ears. If you've read this before, you know Chandler already has a hearing loss from the chemo. It is slight now and we don't want any further damage. Please pray for protection for Chandler's hearing. Also, he will take another drug that will cause viscious mouth sores. During the last transplant God protected his mouth and I pray for that continued protection!!!!God can do it!
We go back to the doctor tomorrow (Monday) for a second post-transplant check -up. They said since he looked so good on Friday to expect to be allowed to go to Moultrie on Monday!!! Wooo-Hooo! We hope we are not disappointed! I am not sure how long we will be allowed to be home, but we are grateful for any time! I also will go ahead and say here publicly that even though we will be home, we still have to be soooooo careful about germs! I hope the flu isn't as bad at home as it is in Atlanta, but nonetheless, please understand that no children can visit us in Moultrie. I am so glad that Betsy is out of school right now and can be around Chandler without fear of what she would be bringing home from school.
I guess it is just as well that we can't go anywhere, Chandler is ,and will be for a few months, on a special BMT diet that does not allow for any restaurant eating! No drive-thru at all!!!What an adjustment!!! I guess I'll be doing a lot of cooking..I hope I haven't forgotten how! (Hey Wayne, they didn't say anything about no Boston Butt, though...ha ha ha) We do appreciate the BBQ and delicious Brunswick stew your bride sent to us in the hospital! What a treat!!
Well, that's the news as I know it right now. Thank you for your constant prayers for protection and cancer eratication! You all are so great!
In His hands,
Kim
Monday, December 22, 2003 3:32 PM CST Prayer Partners,
Well, I finally got back on the internet!! Thanks to Chip and Kim Williams. Our laptop wouldn't connect, so Chip sent his to me by way of Kim!! I hope I will be able to continue to update in our room, as the computer on the hall doesn't work much of the time.
Chandler has been on an upswing since Friday. He acts like he feels so good! He is amazing! This is our first day with real white cells (last Wed. was a fluke). He did need to get some platelets this morning, but other than that, he seems so great!
The doctor said she looks for us to go to the garage apartment on Christmas Eve. Can you think of a nicer gift? Betsy and Jim Mac will spend Christmas Eve at our house , wake up to see what Santa brought and then make the drive to the apartment to be together.It should be a joyous reunion! We will remain at the garage until the doctor gives us her blessing to go to Moultrie for a few days. Hopefully Chandler's numbers will warrant several days at home.
I want to thank Tommy Beall and Andrea Gillespie Stanfield for coming to see Kimberly Reames Williamsand I last night! I don't remember laughing so hard in a very long time. Plus, they even brought us a delicious supper! I had never eaten Panera before, but it was great! I hope they will come back during our next transplant in January.
I have an additional praise to tell you about! They let Chandler get off his pole for the very first time since Dec. 5!! It was only for 4 hours, but it was great!!! Jim Mac brought up a Little Tykes basketball goal to play in the room, and Chandler thought he was Shaquille O'Neal!! You should've seen him.
Again, I want to thank "Mama Duck" (our fav nurse) for the extra mile she always goes to to make our stay at the hospital a whole lot better! She is so wonderful! She is so much more than just a nurse, I feel I've made a friend that I do not want to lose contact with.
During this Holy season, we have so much to be thankful for! Christ's birth is such a special thing to celebrate. I thank all of you who celebrate with us at our pending break from the hospital but also I ask that you remember all the children who aren't well enough to get out of this place...and there are many! I will say a special prayer for them to have a peace about being isolated from their loved ones. And that there will be other Christmases for them. I hope you will too.
In His hands,
Kim
Wednesday, December 17, 2003 1:14 PM CST Helloooo Prayer Partners,
Today is day+5 and Chandler continues to amaze Meme, Papa, the doctor and me!! No one can tell me that God isn't doing all of this!! I got brave enough today to ask the doctor about possibly , actually going home for even a little while between transplants. (Not just going to the garage apartment, but to Moultrie.) She said of course it depends on Chandler, but, as good as he continues to do, she thinks it is very possible!! Can you imagine my jubilation??? I had resigned myself to the fact that the garage apartment was going to be as good as it got. WOW! Again, God already has this all planned out. I'm so grateful for all His many blessings.
One of our many blessings is the medical staff who is following Chandler so closely. The doctors are so sweet and appear to care so much about these children. But even more than the doctors, it is the nursing staff! They can make or break the day! Thankfully, we have the most attentive (and experienced)nurse here as our Primary Nurse. She is absolutely hilarious and caring. The other day she heard Chandler ask for some tea to drink. She said, did he want tea? I said, we drink a lot of tea at our house she said she'd have him some here tomorrow.....and she did! I mean, she did not have to do that! But see, she just wanted to make things a little better for my son. I can't explain how important that is. She is the same nurse who eased Jim Mac's and my fears upon arrival in this scary place. She is an angel here on earth! And the best part is, she may be our favorite, but there are several others who are also excellent!!!! We do feel blessed with many of them.
Chandler has already started producing a tiny bit of white cells. Again, this is a very good sign. Dr. Haight said she did not expect any white cells until the weekend, but again, Chandler seems ahead of the curve!! WoooooHooo!
Papa needs me to get off the 'puter so he can read ESPN.com, so I will close. To all my "teacher buddies" out there, I hope you have a super restful break and are raring to hit those CRCT objectives when you return in Jan. I also want to tell Cheryl, Lori, and whoever else thanks for taking Jim Mac supper. He promises to bring some to me on Friday. Also, if anyone wants to visit, I would absolutely LOVE it. Please just call my mobile or the room(404.315.3365) so I'll know to put on some make up that day!!! Visitors are very welcome:).
Have a blessed day! We are!
In His hands,
Kim
Tuesday, December 16, 2003 12:08 AM CST Dear Prayer Partners,
Today is day 4 post transplant and Chandler is still "wowing" the doctor. He still does not have a mouth sore....hallaleuh!!! And even though he is now on the liquid nutrition, he is eating a little something every now and again. Last night Papa was able to get him to eat a "Little Debbie" oatmeal pie! Today he has eaten a few Fritos and a bite of blueberry muffin. Again, it isn't much or exactly very healthy, but it is something! Mama Jane and Miss Ruth, Chandler needs some of your fried chicken! Ha Ha :)
Chandler still does not act like he is in pain. He has had no morphine at all! He has had a touch of temperature, low grade...kinda off and on (more off than on:0) but not enough to even require Tylenol. The doctor said today that she thinks he probably will not get a mouth sore, if he hasn't by now. God surely still works miracles, big and small.
Chandler is active and playful, which works all three adults to death, but we wouldn't have it any other way. Aunt Amber is picking up Betsy from Primetime today and taking her to their house for the rest of this week. It sure is good to have such great family members on whom you can depend! Thanks, Amber ,Chip, Meme and Papa!
It is possible that we will be able to go to the garage apartment a bit after Christmas or even Christmas day, but we will not be able to come to Moultrie. We have to be seen by the doctors daily once we are discharged...so we must stay in the area. We will stay at the garage apt. until we come back in for the second transplant, so it will be February before we see the Colquitt county line:(. Again, I am just so grateful to Kim and Tom for letting us stay in their apt.!! Motel 6 would not be nearly as homey! (or clean).
Well, that's all for today's update. Except I need to thank all of you who read this daily and pray without ceasing for us. God has blessed us over and over and over. It is through prayer that Chandler has done so well so far. To Him be the glory!
In His hands,
Kim
Monday, December 15, 2003 11:09 AM CST Good Afternoon Prayer Warriors,
Today is Day 3 past the transplant. So far Chandler is still marching forward toward healing. Sunday night he started running a fever. By all accounts, (doctors, nurses, etc.) this is extrememly normal. As a matter of fact, our nurse this morning said she would be more concerned if he did not run a temperature...that that could be a sign that something isn't quite right. The temp. never got above 102, so that is good. They started him on an antibiotic, just to be sure. Of course they took blood samples to see if any germ starts to grow. We hope he doesn't.
He also will get his first of several doses of platelets. This is also very, very expected. As a matter of fact, they told us prior to transplant that Chandler might need platelets everyday for several days in a row, since the chemo really destroys the ones he had. So we knew he would need them at some point.
The best news is that Chandler is still talking and playful. I left him in the room (with Meme and Papa) watching "Finding Nemo" for the millionth time. He seems content. However, he did not eat breakfast this morning. If he doesn't eat at lunch, I feel sure they will put him on the liquid nutrition. I'm glad that is available to keep him healthy, but if you've read this site before, you know that not eating was one of my biggest fears. They say that the stomach "forgets" how to eat if on the nutrition for long, so of course I hope he doesn't need it for long.
Another praise is that he doesn't have any mouth sores that we can see YET. Again, I stress yet, because they could appear at any point. Put the praise is that he's not had any to this point, which is extraordinary. Again, I give all the credit to God for enveloping Chandler in His protective arms. When you see what other children are enduring, you really are grateful.
Please continue to pray for us through the holidays.
In His hands,
Kim
Saturday, December 13, 2003 2:09 PM CST Dear Prayer Partners,
I apologize for not updating yesterday, but of course, the hospital computer that I am allowed to use decided to take a vacation yesterday and since it was late Friday, no one was interested in coming to my rescue. I am now working on a computer at the nurses station, but I won't be able to use it again. I have to wait until they get the parent one fixed and use that one.
Now, back to Chandler. He is doing soooo well!! The transplant was just as I'd hoped, uneventful. He did vomit a tiny bit twice, but that was it. He slept for about two hours and then got up in a good mood, ready to eat and play! Isn't God good????
Chandler does continue to eat some, but you can tell that his appetite is waning a bit. He just ate "Nemo"(goldfish) crackers for lunch. I don't care, as long as food still keeps going down that pipe!!
We continue to appreciate all the prayers being said on Chandler's behalf. The next two weeks when Chandler's counts are nothing will be so critical. Please keep praying for few, if any, side effects and that he keeps feeling good for as long as possible!
In His hands,
Kim
Friday, December 12, 2003 9:07 AM CST Good Morning Prayer Warriors,
Today is a red letter day in Chandler's recovery. At 11:00 am they will return Chandler's cells to him to begin his healing from the high dose chemotherapy.
They have already given him some pre-meds to try to head off any complications. Please pray for us that this is a non event. It took approximately 3 1/2 hours to collect these cells and it should be less than 15 minutes to give them back!!! They say the preservative that they were frozen in has a very srong odor...some say it smells like canned corn?!?! I'll let you know:).
I will update this afternoon to report on how the transplant went. Again, I ask that you pray for no complications and this runs as smooth as silk!
PS Jim Mac and Betsy will drive up this afternoon and Uncle Chip made it home from His mission trip to Mexico! Praise the Lord!
In His hands,
Kim
Wednesday, December 10, 2003 11:10 AM CST Good Afternoon Prayer Warriors,
I am pleased to announce that as of 10:00 this morning high dose chemo for this transplant is now HISTORY! The transplant doctor continues to be pleased with Chandler's progress. I am so much more than pleased! I do realize that the hardest days are still to come, but he has done remarkably well through this so far. Don't tell me prayer isn't responsible!!!!
The constant baths are now over, we still can not use soap on his skin, so Aveeno baths once a day are now on tap. He had his first one last night before bed....he did not like it at all. I have to admit, the water looks brownish and not very inviting. (He is kin to his Mama and likes to be clean). The water feels OK, it just doesn't look too swell. They still have Chandler on the very high dose fluids, which means we must change him every hour to hour and a half...so we wet the bed...often in the night. Small price to pay, though. The high fluids protect his kidneys and bladder from the chemo, so again, I say, small price to pay!
Chandler's energy level is remarkable! He doesn't walk to the playroom, he runs. Thank goodness they have him on a very long IV line. He has not needed any transfusions yet, which is also very amazing. Once the chemo starts really "doing a number" on his red cells and platelets, he could need to be transfused as often as once a day for a while.
I am planning to attend a support group today to meet with other BMT families. I hope it will be good to hear from others who've already walked this road.
Again, I give all the credit for this good news to our Lord and Savior. Keep praying for protection from infection, fever, hearing loss, mouth sores, lack of appetite, skin breakdown, and any further cancer. Your prayers have comforted me so much ,especially these last few days. Thank you!
In His hands,
Kim
PS I heard from my brother yesterday! He and Amber are enjoying their work in Mexico. Malinda, I gave "trombone playing Pooh" for them to give away down there, it was the first toy chosen. (Chandler can't have any stuffed animals anymore). Thought you'd get a kick out of that.
Tuesday, December 9, 2003 9:46 AM CST Good Morning Prayer Partners,
Sorry for the delay in updating, but when I reread what I'd written, things had not changed,so I didn't write anything new.
Today is Chandler's next to last day of chemo for this transplant. They will let him "rest" on Thursday and then give him back his cells on Friday, Dec. 12. They call that day his "birthday." I guess because it is sort of a "rebirth". I like that term better than "rescue" which is a term they also use.
I know it is still so early, but I am sitting here ready to announce to all who will hear, prayer works!! Chandler has just done remarkably well thus far. The next two to three weeks are supposed to be the hardest, and I'm sure there will be some very tough periods, but my Jesus has this all in His control. He has power over all of this. So many have pleaded for my child and I feel a comfort from this. So, I ask that you not stop now!!! Keep lifting Chandler's name. Please continue to pray for protection from infection, fever, side effects, mouth sores, skin breakdown, hearing loss, and further complications from this high dose chemo and stem cell return.
Also, I ask that you pray for a safe return of my brother and his wife from a mission trip to Durango, Mexico. They are scheduled to be back on US soil also on the 12th. Chip, if you are reading this, I hope you will come by the hospital...no matter the hour! You are doing the Lord's work and you will be blessed abundantly!
Meme and Papa are here with Chandler and me. Always coming in smiling and ready to entertain Chandler, giving me time to breathe, write on this computer, etc. I don't like thinking what it would be like without them.
Well, I must go see what the doc is saying.
In HIs hands,
KIm
Saturday, December 6, 2003 1:04 PM CST Good Afternoon Prayer Partners,
Yesterday was our first day at Egleston and it was pretty good. Jim Mac and my nerves were pretty much on edge...just the fear of the unknown, mostly. Fortunately, our nurse was friendly and experienced and knew just the right things to say. Chandler handled the "tepa" pretty well thus far. He is the cleanest boy in Atlanta, having had several baths yesterday and a couple in the night. This is all because this drug is excreted throught the skin and must be rinsed at least every 4-6 hours to prevent chemical burns on his skin. Yuckkko! But as I said....so far so good. He hasn't exactly LOVED the baths, but he is getting used to it, I think. We will only have to do this through Monday. But if rinsing him off keeps his skin intact, then of course we will do it!!
The next drug will be worse on his insides, particularly his mouth and GI tract. We are swabbing his mouth with an antibacterial rinse. He hates that worse than the baths!!! But again, if it helps keeep the sores from being so bad, it is worth the screaming! We know it doesn't hurt him, it just tastes bad. I've tasted it and its not great, but not horrible either!
We will take these drugs until Wednesday, Dec. 10. They will let him rest (no chemo) on Thursday then they will give him back his own stem cells on Friday, Dec. 12. Then we wait and pray for his cells to start healing the sores and his skin breakdown. They have prepared us that a fever is almost assured, but they will treat him with antibiotics. They have also told us that he will probably not be able to eat and will have to give TPN, or liquid nutrition through his line. This isn't a problem except we don't want his stomach to "forget" how to eat ...we want his appetite to stay as hardy as possible for as long as possible.
Chandler has charmed the staff here, just as he did at Scottish. We are so glad that so far, he seems his normal, active, happy self! We hope this continues on and that he doesn't need a lot of morphine for pain that will knock him out. (However, they've told us they all do).
Keep lifting our names in prayer for full recovery with few side effects, no more hearing loss, and no more Neuroblastoma in his little body!!!!
Thank you to everyone who has done things for us...the things I know about and the things people have done privately, you know who you are even if I don't. God bless all of you for making this journey a bit easier.
In His hands,
Kim
Friday, December 5, 2003 3:14 PM CST Good Afternoon Prayer Partners,
We are finally inpatient at Egleston ("the egg"). Right now Chandler is napping and just about to get his first dose of Thiotepa. "Tepa's" side effects are less about nausea and more about burns. It is excreted through the skin so Chandler will have baths 4-6 times a day until Monday, to rinse the chemo off his body. Please pray that Chandler's body tolerates this well, but the cancer does not! Please pray that Chandler continues to be able to eat a little something everyday so his tummy does not "forget" how to eat. Now, mine ,on the other hand, could use a little "forgetfulness." ha ha
He will have another chemo added on Sunday, called Cytoxan. Chandler has had Cytoxan before but not in the massive quantities he will receive from Sunday to Wednesday. This chemo will make a lot of sores all through his digestive tract...mouth to anus. Please pray that they do not hurt as bad as they sound. There is not a whole lot that they can do for this, so pray extra hard for Chandler about the mouth sores. They will let his body "rest" on Thursday and then give him back his stem cells next Friday, Dec.12 Please pray that Chandler's cells go to work immediately repairing all the damage done and that the neuroblastoma doesn't know what hit it!
Pray for all our caregivers, doctors, lab folks, etc. that they all do as much as they can to beat this awful stuff!!
Betsy, heard you did a good job at school this morning. Be sweet at Blake and Robin's and Taylor Marie's. Daddy will see you Sunday night at church. I can't wait to see my videos!!!
Thank you for all the prayers! We need 'em like never before!
P.S. Go Dawgs....Beat LSU
In His hands,
Kim
Friday, November 28, 2003 1:54 PM CST Dear Prayer Partners,
Happy Thanksgiving to everyone. We have so much to be thankful for this year. We have such great friends and family who keep supporting us.
Chandler's scan was a huge improvement over the scan done in July. The technician who performed his scan Wednesday was the same one who did it before and she said this was much better than before. The oncologist said it was a moderate to good response but he was even more convinced that we are doing the right thing doing the two transplants. There was dot in Chandler's hip, a "possible" dot at the top of his femur and a small amount lit up in his head. This is in great contrast to before when nearly his whole skeleton could be seen and the head lesion was huge and showed metastisis. Praise God for the good news.
I am glad to announce here that Thanksgiving at my grandmother's was terrific! My Uncle Wade and Uncle Steve made the dressing under the direction of my grandmother and it was delicious!! I was so glad to be together with so much of our extended family. I could almost forget for a little while what is coming faster than I am ready to deal with. Chandler and Betsy loved having so many kids to play with! I hope Chandler will look forward to being with all of his cousins as much as I did as a child. I wish you could have seen Chandler and Ty (they are 6 months apart in age) playing with cars on my grandmother's coffee table. They were adorable.
Tomorrow is Betsy's 8th birthday party! I am so appreciative that I get to be a part of it. Meme, Papa, Uncle Chip, Aunt Amber, Aunt Kathy, Uncle Walt and Katie are coming. My Grandmother thinks that she may ride over too, if she's up to it. Thank you for all the warm wishes sent to her. Courtney, Betsy LOVED your gift and has slept with it ever since she opened it. You are a very special young lady!
On Sunday we will make the drive back north to the garage apartment in order to be at Egleston at 8:00 am Monday. There Chandler will undergo an all day renal function test and also have his teeth checked. Tuesday will be free and then we will go in on Wednesday Dec. 3 for the beginning of a very LONG and scary treatment. They will give him back his stem cells on Wednesday Dec. 10 and then we wait for them to "engraft" and start the job of healing Chandler.
It goes without saying that we seek your prayers for protection for Chandler. Please pray that side effects are minimal but that the chemotherapy finishes off the neuroblastoma. God already has this all planned out, I just have that human side that hates the thought of my precious baby having poison put in his veins in the massive doses that we've not seen thus far. I just wish there was some way he could sleep through the whole thing and wake up feeling better. I pray that Chandler's cells work quickly.
I also ask for prayers for my brother and sister-in-law as they go on a mission trip to Mexico during the first part of December. (This was planned before we knew what would be going on with Chandler.) I hope they will be renewed spiritually and return healthy and with grateful hearts for the blessings we have every day.
Thanks to all our "neighbors"...especially the Basses and the Griners! I hope God richly blesses you for your generousity and sweet spirits.
In His hands,
Kim
Monday, November 24, 2003 5:36 PM CST Dear Prayer Partners,
Tomorrow and Wednesday are very big days!! Tuesday Chandler will get his third(and hopefully last ) central line put in. His last one got a hole in it and had to be removed. While he is anesthesized(sp?) they will also check his bone marrow again. We hope and it expect it to be free of any neuroblastoma cells. Also, tomorrow afternoon, Chandler will be injected with a nuclear medicine. They will scan him Wednesday. Wherever any neuroblastoma cells are present, they will "light up" during the scan. Please ,please pray specifically that this test reveals very very little cancer still alive in his little body.
It is our sincere prayer that the tumor in his head reveals no live neuroblastoma cells left, and all that they saw on the CT is just dead material. This is possible!
We get to go home Wedneday afternoon, have Thanksgiving with extended family on Thursday, wash and pack on Friday, do Betsy's 8th birthday party on Saturday, and drive back on Sunday ready for Egleston on Monday morning at 8 AM. Whew! By Wednesday we will have begun giving the very HIGH dose chemo that should zap any neuroblastoma that might be hiding somewhere in his body!!!!
I do not know how much I will be able to update once the high dose chemo starts. It all depends on how Chandler responds.
Thanks for all the uplifting messages. They mean a lot!!
In His hands,
Kim
Saturday, November 22, 2003 2:31 PM CST Dear Wonderful Prayer Warriors,
This morning I could not believe Chandler's lab work!! He has gone from having an ANC on Thursday of 30 to 500 on Friday and 5100 today(Sat.). Isn't God good?
The problem with Chandler feeling so good is that he's hard to contain/entertain. He still has to be on the IV pole 24/7..so he is limited, but does not want to be. I'll still take that over him acting/feeling sick, though.
The plan is still for us to be discharged from here on Sunday, but to stay in Atlanta at the garage apartment until Wednesday afternoon after a scan is done.
We look forward to seeing family at my Grandmother's on Thursday and have Betsy's 8th birthday party on Saturday and then come back to the garage apt. on Sunday.
We have tests at Egleston, Monday Dec.1 and then we'll be beginning the "transplant time" on Wednesday, Dec.3. Please pray that my fear is kept at bay....each new part of Chandler's therapy is scary, but we know God has not forsaken us thus far, and He won't during this part either.
In His hands,
Kim
Friday, November 21, 2003 3:35 PM CST Prayer Warriors,
Just a quick update to let everyone know that prayers do get answered. I asked that we get negative cultures and for God to help rid Chandler's body of infection, since his counts were too low to fight anything himself. Well..... we still have negative cultures... Yippee... and Chandler's ANC count went from being 40 on Tuesday, 30 on Thursday to 500 today!!!! What a major, major improvement!!! This means Chandler is well on his way to being able to fight any bugs instead of being so susceptible. Praise our Lord above for carrying us through this valley and for continuing to bless us in more ways than we even can understand.
The encouraging words left on this site are so important for my sanity! Please do try to write when you can...I know it takes some time to do, but it means so much to have a connection to people who love us and want to pray and support us.
Jim Mac and Betsy are on their way north to see us. Can't wait!
In His hands,
Kim
Friday, November 21, 2003 5:04 AM CST Good Morning Prayer Warriors,
Thank you for all the prayers, God heard them and blessed us with a truly marvelous day. No tests, no bad news, just a good day with sweet Chandler. He even let Papa hold him and take him outside so I could get some very much needed rest!
Thanks to John and Margaret for delivering Meme yesterday afternoon. Also, thanks to Tina for the delicious cookies. Thanks to Michael for Betsy's surprise yesterday, I know she was thrilled. She needs a boost right now. Also, thanks to Rusty and Sophie for taking Betsy to see Disney on Ice last night. I'm sure she had a blast. Thanks to SabO for helping Betsy with invites! You are a true, blue friend!
As far as I know, yesterday's blood cultures are still negative. Please pray that they stay clear and the next ones will be as well.
The plan of treatment right now is: stay in the hospital until Sunday. Go to the garage apt. Sunday and Monday night. Be back to the hospital Tuesday morning early for surgery for a bone marrow aspirate, and to put in his third central line. (I'm not sure if they will do a bone scan then also since that requires sedation too.) They will also inject Chandler with a nuclear medicine on Tuesday. We will stay in the hospital Tuesday night and then do a MIBG scan on Wednesday. Hopefully, once the scan is complete, we will be given the go ahead to come back home for Thanksgiving. We will get to stay home, presumably, Thursday through Sunday afternoon. We are to be at Egleston Monday morning, Dec. 1 to do a test and then be inpatient for the transplant on Wednesday Dec. 3. Yes, as that draws nearer, I really need prayer to calm my nerves about it.
That's about it for now. I'm ready to come back from Australia now. Ha ha .
In His hands,
Kim
PS thanks for all the folks who wrote me messages yesterday! They really made a difference!
Thursday, November 20, 2003 4:18 AM CST Good Morning Prayer Partners,
If you are familiar with the children's book, Alexander and the Terrible, Horrible,No Good, Very Bad Day, you will understand what I mean when I say, yesterday I wanted to move to Australia! When the day began I had no idea what a day it would be.
We had Chandler's hearing test done and it revealed what I had been fearing for several months now, the chemo has done some damage to his hearing. It is not to the degree to need hearing aids, but any loss is a loss.When talking about a baby just learning language, hearing is so important for normal development. Plus, if you know my side of the family, Chandler is already handicapped in the hearing area anyway! We just praise God that I absolutely can not tell any difference....yet. Please pray that the damage is now over and does not progress further.
Then our oncologist came to tell us that he's been in consult with many others about Chandler's situation and is recommending that we do the tandem transplant instead of a single one. We have known all the time that the protocol called for the two transplants all along, but we had been hoping to only have one. The data simply supports the idea that you get better results with two instead of one "bigger, stronger" one. I know God already has this all worked out and is revealing it as we can handle it. I think He thought we could take quite a bit yesterday.
Also, Chandler's central line had just about had it. He has had it since September ( I think) and it was working its way out of his body to the point that last night about 6:30 the surgeon came to the room to look at it and decided to take it out.....yes, right there in the room!!!! They numbed him locally at the site, cut the stitches and bam! it was out!! Papa held Chandler's legs and feet still and I was at the head, trying to calm and soothe him. But, of course Chandler still needs IV antibiotics to fight this nasty infection so....they had to put in another line, only this is a regular IV in his hand...nothing permanent. Once the infection is under control, Chandler will go back under general anesthesia AGAIN to put in his third central line. Yes, I did say third!
So, I guess sometime next week...Monday?...maybe Chandler will go back to the OR and they will put in another line and do another bone marrow aspirate to check to see that Chandler's marrow continues to be clear. I hope at this time they will also do a bone scan since he has to be sedated for that test anyway.
Just when I did not think I could take any more God gave us a bit of really good news. The CT that was done yesterday looked REALLY, REALLY good. the tumor in Chandler's head has reduced by over 80% and there is only a tiny ring around his aorta where they removed the tumor. The oncologist was elated with this! (SO, of course we were too).The doctor feels very good going into transplant with this much tumor gone. The oncologist also told us he's been checking on Chandler getting "proton beam radiation" instead of regular radiation following the transplants. If we opt to do this, we will have to go to Boston , Massachusetts as this is the only place in the US that they do this on children. I will tell more on this as I find out about it. I do thank my friend and cancer mommy, Carol for telling us about this type of radiation. Her child Mckenzie(see link at the bottom of this page) will be getting this safer type of radiation in January.
Well, I always ask for prayer requests, here's today's. We really need the medicine to rid Chandler's body of this nasty infection. Chandler's white cells are almost nil so he can not fight. We are depending on God to wrap Chandler in His healing hands and use the antibiotics to kill of the infection. Also, I must give praise that Chandler's spirits seem so good. He has not had a fever this whole time and has had an "OK" appetite.
Thanks again for praying for my baby! I also selfishly ask for prayers of strength for me and for Jim Mac and for the rest of our family. This time has been a rough one and it is not over.
In His hands,
Kim
Tuesday, November 18, 2003 9:16 PM CST Good Evening Prayer Partners,
I did not even have time to write that we got to go home yesterday around 12:30 before they called us this morning to tell us to come back. Uuugh! The culture that was taken Friday night started to grow something after 3 days! I hope this means that it is not outrageously hard to kill. Anyway, I got to spend one night in my own bed, so I'm grateful. It is a lot of driving, but it was worth it to have 17 hours at home. I was able to go to Wal-mart, look at Betsy's signed papers, check her homework, and unpack my suitcase(for nothing).
Chandler is ,thankfully, without symptoms!He seems to be in good spirits and very playful, which makes being "hooked-up" to the IV pole extra hard. Papa is here to help play. It definately takes more than one adult to manage this little guy!
I hope we will take advantage of our time here and do some of the tests we are scheduled to do next week this week. Maybe we will be home Thanksgiving week!!!
Thanks for all the prayers being said for Chandler! We love all of you.
In His hands,
Kim
Saturday, November 15, 2003 6:47 PM CST Good evening Prayer Partners,
I can't believe it, but we are BACK at Scottish! We came home Wednesday night in just enough time to go to church. Everyone celebrated our "last chemo euphoria" with a round of spontaneous applause! Chandler loved the attention.
Thursday was pretty normal , but Friday morning Betsy woke with a virus and wasn't able to go to school.Friday night I went out with girlfriends from school to eat, laugh, and shop a bit while Jim Mac kept the children.(WHICH WAS SUPER FUN, I MIGHT ADD) Before I got in, Jim Mac had called on my mobile to tell me Chandler had vomited!!!! I was so scared! Later on, about 1:00am, Chandler started running a fever! So we went to the local ER, got antibiotics, and rode in the ambulance arriving here about 7:30am. Yes, we are exhausted! Betsy and I followed the ambulance in our van. She slept and I drank coffee:).
By the time we arrived here, Chandler did not have a fever!Praise God!! But of course, they are still giving us antibiotics, just in case. Hopefully, we will be able to go home soon as long as he stays fever free and the cultures do not grow anything.Please pray that this is just a small bit of excitement, and nothing to worry about.
Thanks for checking on us and lifting us in prayer.
In His hands,
Kim
Thursday, November 13, 2003 5:44 PM CST Prayer Partners,
Chandler and I are home in Moultrie! Hurray! We actually got here Wednesday evening, but I did not have time to post a new journal until now. Chandler continues to do well....sooo far. Next week when his counts go down will actually be the real test! I pray that Christ just wraps his ever protective arms around him and does not allow any infection/fever to attack. It would really be extra nice not to have to go back to the hospital until scans.
If you get a chance, and are interested, there is an article on the front page of the Atlanta Journal-Constitution today about a 2 year old, Brandon Connor, from Peachtree Corners who had neuroblastoma and had gone to San Francisco, CA to have surgery and when they did the pre-op scans the tumor had disappeared! Praise God! I know those parents are on cloud 9999! I had actually read about Brandon on HIS caringbridge page! Now they say he is cancer free and can not explain how it happened. If you'd like to read it, it is on the web. Just go to Atlanta Journal-Constitution and it comes up first. It is titled, "Its Just a Miracle".
Well, I should go clean up the supper dishes! I still am amazed at the generousity of friends and people who I don't even know who keep praying, keep checking this site, and loving us so much. Thank you.
Much love,
Kim
Tuesday, November 11, 2003 9:33 AM CST Good Morning Prayer Warriors,
Today is a red letter day for us. This is Chandler's final day of regular chemotherapy. He will have chemo during the transplant, but this is the very last time we take chemo at Scottish. I can not believe that this day is finally here! Back in July when we were told we would have 5 rounds of chemo, it was like staring at the face of a mountain, and being told to scale it. Luckily, we have Jesus, because he provided the safety ropes, the harness, and everything we needed to reach this summit. I know it isn't over yet, but I do feel like we can stop and "breathe" this fresh "mountain air" a bit before thinking of what comes next.
Speaking of next, the next time we come to Scottish Rite will be to have tests, tests, and more tests. We will have bone scans, CT scans, MIBG scans, hearing tests, echocardiogram, and a bone marrow aspirate. Hopefully, they will coordinate these so that he can be sedated the least number of times and do things "back-to-back". This should take 2 to 3 days. Right now the plan is for us to begin the transplant sometime during the first week of December.
Chandler ate like a horse this morning, much to our delight! I am always glad for him to eat because it keeps his strength up where he can fight the hardest! Today's chemo will go in over 6 hours, beginning at 3:00pm, I think. Please pray that he continues to tolerate it sufficiently and that it spares his good cells and kills off that dreaded neuroblastoma! Also, I ask for traveling mercies for us when we drive home to Moultrie on Wednesday.
Great Gran is off the vent and is talking a little. She is still in the cardiac ICU in Macon, but progressing nicely. She's even had a sponge bath! Thank you for the messages and prayers for her as well. We are hoping that she will be able to "talk someone through" the making of the Thanksgiving dressing this year. I hope it is my mom, and not Uncle Wade, Uncle Steve, or my Daddy! Ha Ha, since we won't get any at Christmas this year, we want to be able to actually eat it! Ha Ha
That's a lot to read so I'll close now. Thank you again for the prayers for our family !
In His hands,
Kim
Monday, November 10, 2003 2:56 PM CST Good Afternoon Prayer Warriors,
We are once again at Scottish Rite for our....can you believe it...LAST regular chemo! In honor of this special occasion, I brought a ten layer chocolate cake for the nurses and staff! Mrs. Bettie Williamson made it for me, so many of you know how beautiful and delicious her cakes are. I was shocked at how many people had never seen, let alone tasted, a 10 layered cake before. (Poor old yankees, they think rubarb is good, don't they, Wayne).
So far everyone has raved about how good Chandler looks. His counts were great this morning, so we are entering into this chemo about as strong as he can be, which is good because this is a really stiff chemo...but again I say...the last.
My brother moved from Macon to Albany today. My 80 year old grandmother had quadruple bypass surgery today in Macon. So this day has been a big one for our family. It does seem however, to be all working out. My grandmother is in recovery, all of Chip's belongings are safely enroute and Chandler is riding his pole.
Speaking of his pole,Chandler was out riding when one of the Atlanta Thrashers was coming around giving out hats and autographs. He was accompanied by a camera crew from WSB TV, so Chandler might be on the news tonight. If anyone sees him, please let me know. I will try to watch at 6 and 11.
As always, I covet your prayers for a tolerance of the chemo, good rest for Chandler tonight, and no fever once we come home.
In His hands,
Kim
Tuesday, November 4, 2003 10:20 PM CST Hello Prayer Warriors,
God has delivered us once again! Monday morning at 9:00 the nurse pulled the tube from Chandler's nose. They said he could eat and drink "clears." I couldn't open the gatorade fast enough!! He was enjoying broth like never before!
After he tolerated the "clears" they said he could have other things. We gave him anything he asked for including potato chips and M&M's(remember he missed Halloween).
When the surgeon came around and saw how wonderful he looked and heard what all he'd eaten (he laughed at the M&M's) he gave us the go ahead to go home. It was 4:50 pm in Atlanta, but we did not care. We packed up that room in record time and were in the car before they could have a chance to change their minds!!! We sat in some traffic on 285, but it was better than sitting in room 311 one more day!!
I still can't believe how he moves around with that long incision going across his abdomen! You should see him! I mean, we were in ICU on Friday and sitting on 285 by Monday afternoon! That must be some kind of record!
We go back for chemo on Monday until Wednesday or so. This will be the last of the "regular" chemos. Then we enter the transplant phase. Please pray for disernment on the doctors part that they make the best decisions for Chandler's treatment. So far they seem to be right on the mark! God has been so evident in all aspects thus far, and I know he's not about to abandon us now!
The messages left here are just so great! We appreciate each and every one of them...even the ones about Chandler going to Tech! The truth is, he can go to FLORIDA if he wants to...we just want him to be able to go somewhere! And with all the love and blessings being poured over him, I have no doubt he's going to make it. God just has this all worked out! I know He is using this experience for good.
In His hands,
Kim
PS thanks to Misti @ church for adding our new photos!
Monday, November 3, 2003 8:37 AM CST Good Morning Prayer Warriors,
Chandler got his NG tube (tube in his nose that goes down to his stomach) out this morning! Hurrah!! It was a non- event(we like non-events) and he has already had some purple Gatorade and a bite of Jello. The surgeon will come around this afternoon to see how great Chandler looks. They weighed him this morning and he has only lost .7 kilos which translates to 1.5 lbs. Not bad for a child whose not eaten since Wednesday evening and here it is Monday morning!
Hopefully Chandler will continue to drink and they will opt to remove his IV also then we will really celebrate!!!!
I guess we are here until the surgeon says we can go home. I hope Chandler really demonstrates how good he feels for the surgeon when he comes around. He move around like there is absolutely no hip to hip incision running across his abdomen. It is amazing! He slept on his tummy some last night. This is all with nothing for pain since Saturday! Aren't we blessed? God has delivered in a mighty fashion this go around! Thank you, Lord!
Gotta run! Keep checking on us!
In His hands,
Kim
Sunday, November 2, 2003 9:15 AM CST Dear Prayer Warriors,
Chandler had a better night than the Dawgs! Thank goodness!
We still have the tube in his nose, but the surgeon looked at him this morning and said we will probably get it out midday, if his output is appropriate. He has had 6 poopie diapers, so something is definately going on "down below."
He is much more mobile today, wanting to be held, and wanting to sit up to watch TV, etc. He also is hungry,( I can't understand why...he hasn't had a bite since 10 PM Wednesday night) but he can't eat as long as the tube remains. So do please pray we are able to remove it soon.
Chandler also doesn't seem to be in pain...which is remarkable. I know I'd be pretty whiney with an incision as long as his. (Hip to hip.) He hasn't had any pain meds for over 6 hours and doesn't seem to need them as yet. Meme and Papa brought Jim Mac and me a McDonald's biscuit this morning (a very welcomed treat) but we just couldn't eat in front of Chandler since he can't join in.
Again we say "thank you" to Christ for His healing powers and for all the prayers asking for healing on our behalf. You all are so wonderful to keep lifting us with your prayers and concern for us!
An extra thank you to Theresa Thomas, Mrs. Durham, and Tammy Gandy for coming to see us in ICU. What a sight for sore eyes you were! I am looking forward to a visit from Kim Williams and Jane Maples today...they are coming from Albany.
I ask for travel mercies for these and for Jim Mac as he travels back to Moultrie today and for Betsy and the Odoms as they travel home from St. George also. Thanks SabO, WayneO, and IvyO for looking after Betsy this time so Jim Mac could be with us here. I means an awful lot!
Better luck next year Dawgs!
In His hands,
Kim
Saturday, November 1, 2003 11:12 AM CST Dear Prayer Partners& Bulldog Fans,
This is the first time since I was in the 8th grade that I have not been in the Jacksonville area on this important game day, but our family is where we need to be today!
We moved to the Aflac cancer floor last night around 6pm. It is so nice for everyone to welcome us, by name:) ...sometimes you want to go where everybody knows your name....even if it is the hospital. I asked Chandler last night did he remember us staying in that room before and he nodded his head. So even he knew he was in more familiar surroundings!
We have really made positive progress since coming from the PICU. Chandler has had an art line removed, two auxilliary IV's, and his foley catheter all removed. All that is left to remove is the NG tube in his nose, which the doc says will most likely be removed by Sunday(tomorrow). All he'll have then is his regular IV. He has had two poopie diapers, so his gut is waking up.
His incision is long. It is just above his navel and is horizontal all the way across his abdomen. Dr. Rapkin says, "Chandler, chicks dig scars." If they do, we're going to have to beat 'em off with a stick, 'cause he sure has a few!
I do not want to close without acknowledging our Lord Jesus for guiding the surgeon's knife to get all of that tumor out. We know that God has been in our midst all the time, but he has blessed us so completely with the total removal of this tumor. The prayers that have been said for us are many and sincere. We appreciate everyone for taking time out of their busy days to remember us.
Will report more later!
Gooooooo Dawgs....sic 'em .....woof...woof....wooof
Beat Florida!
In His hands,
Kim
Thursday, October 30, 2003 12:34 AM CST The surgery is OVER!!!!!!
Dear friends,supporters, and above all, those wonderful prayer warriors,
As I said at the start of this entry, the surgery is over and the surgeon said it was a success. Praise our Lord of all Lords, King of all Kings, Healer..Healer...Healer!
The doc said he removed all visible signs of the "gross" tumor(Yeah, I agree, It is gross) and that Chandler "sailed" through the surgery....all 4 1/2 hours of it! We have not seen him yet, as he is still in recovery, but by all accounts, he is doing well. We will stay in the PICU tonight, simply to be extra cautious during these early hours following the lengthy procedure. They will control his pain with morphine and anything else he may need. We are just relieved and happy that Chandler is soon back in our hands, however, gingerly.
Jim Mac, Meme, Papa, and I are so very grateful for the prayer vigil that is ongoing for our baby. It means more than I can express here in words, but if you've ever had someone you love, go through anything like this, you know what a comfort it is to know that people are stopping what they are doing in their busy, busy days to do something so important and profound for you. It is humbling and overwhelming. Thank you.
We expect to go to "our" regular hospital floor(Aflac Cancer floor) tomorrow, barring any unseen complications, and stay there for 6-7 more days and then home to MOultrie. They will let him recover for another week or so and then on to the 5th and last chemo.
The next decisions to be made are tough ones regarding radiation and whether we will have two slightly smaller transplants or one super intense one. But right now we are concentrating on Dr. Bleacher's success with tumor removal and one more step toward total healing made.
I'm ready to go see Chandler, so let me go wait by the window. My love and appreciation to all!
In His hands,
Kim
Sunday, October 26, 2003 4:18 PM CST Hello all you wonderful Prayer Warriors,
I am glad to report that the stem cell collection went well. The CT scan was just what the doctors expected...a 50% reduction in the tumor in his skull and 33% reduction in the one in his abdomen. Praise God for His healing hands!
We will go to the garage apt. on Tuesday afternoon so we can get an early start on all the "pre-op" activities on Wednesday. Surgery is scheduled for Thursday morning at 7:30. The surgeon is the same one who took the biopsy at diagnosis,and inserted both central lines, so we have been with him before. Please be lifting us in prayer as they put him to sleep yet again. We will go to the Pediatric Intensive Care Unit following the surgery and stay there until he is stable. Then we will go to the regular cancer floor for a few days, then home to recover.
They will let him recover anywhere from 10 to 21 days, then he will take his last chemo. Twenty-one days afterhis final "regular" chemo, he will be ready for the HIGH dose chemo in the transplant unit. They will blast him with much more intensive chemo than he's had thus far. This is why they have those cells ready to give back....they call it a "rescue." That is when we will be isolated, to cut down on any chance of infection. That will be for a month to 6 weeks.
I hope I've not bored you with too many details, I just want folks who keep up with us to know what's coming next. It is your prayers that sustain us! Thank you.
We did enjoy celebrating my grandmother's 80th birthday last night. Kathy and Walt really know how to put on a party!
We are enjoying a few days home with relatively normal counts(we can go outside the house). Pray for no fevers, complications, etc. that could interfere with next week's surgery. As much as I hate to see him have to endure yet another procedure, it is a necessary part of his cure. Pray that our family can be the support that Chandler needs.
In His hands,
Kim
Wednesday, October 22, 2003 7:50 PM CDT Hi Prayer Warriors,
Home again from the "big city". The stem cell harvest went well. It did, however, take two collection sessions. It is fine, though, because we collected for two days, we got even more than they need for two transplants! So, if we only have one transplant, we have an abundance of healthy cells to return to him. Hopefully this will make for a more rapid recovery! God has it all already worked out...I just hope we are following His plan.
The CT scan was today. The tech performing the test said she could see his abdominal tumor, but would not comment further, as she is not a radiologist(sp?). They should be calling me either Thursday or Friday to tell us if it is time to remove the tumor or if we should proceed with our last chemo (not including the transplant) on Monday. Basically, we have a chemo left to take, a surgery to remove his abdominal tumor, a transplant and rescue, radiation, and some medicine to take by mouth and then hopefully I will be typing words like, "cure" "remission" "clear scans" etc. Please support us with your prayers that this frightening journey has a successful outcome.
Jim Mac , Betsy, Chaandler and I are always so appreciative of the messages left on this site.
In His hands,
Kim
Sunday, October 19, 2003 9:43 AM CDT Good Morning Prayer Partners,
Chandler, Betsy, Jim Mac and I have had a glorious 6 days at home! I can't believe it is time for us to be making the trek back already! We think "THE VIRUS" is now behind us. Lord, I hope so, that was no fun at all. Stanley Steemer needs to come again with their heavy duty spot remover truck! Ha ha.
Anyway, Chandler and I will meet Meme in Macon and then go stay at the Noonan's apt. We must be at the hospital at 8:00 am in the morning to begin the pheresis process. The transplant coordinator, Tara, says based on Chandler's blood work this week, Monday should be a "stellar" day to collect stem cells. Please, please pray that she is correct. Carol Fleming wrote that she hopes we get the "Mother Lode" of stem cells! I like the way you think, Carol! The plan is we spend all day at the hospital, but we get to go back to the apartment instead of being inpatient! Hooray. They will call us Monday evening to tell us the results of the collection. If we get enough, we do not have to go back! If we are a bit short, we go back and collect again on Tuesday. Basically, we do this until they have enough for two transplants...just in case we have to do it twice.
Then, on Wednesday, Oct. 22 we go for a CAT scan. This will be the first time they've looked at the cancer to see how much the chemo has worked. The surgeon will look at the CT too to see if he is ready to remove the tumor from Chandler's abdomen.The oncologists have "felt" of his tumor by mashing his belly and are sure that it has significantly been reduced, but the scan will confirm exactly how much it has reduced. It also, will tell the "all important" location of the tumor and if it is still wrapped around major blood vessels and organs. Of course, we hope that it is not and the surgeon can easily remove it.
This is a big week for Chandler! Thank you for all the prayers that have been lifted for our family....keep 'em coming! Prayer does make a difference!
In His hands,
Kim
Tuesday, October 14, 2003 10:46 PM CDT Hello Prayer Warriors,
Sorry for the delay in updating Chandler's web page. Frankly, I have not had a minute to do it since coming home from Scottish Rite the LAST time! Here's the latest:
We spent 11 days in the hospital trying to get rid of an infection that was in Chandler's central line. It did take a while but it was cleared. We were home for 3 days and Chandler started running a temperature again. YIKES!! We were terrified that it was the same infection rearing its ugly head again. We went to our local hospital, as we are supposed to do, to get a dose of strong antibiotics before heading to Atlanta. Well, for some reason they wanted us to go via ambulance, not car. (I think they were so scared it was the line again that they didn't want to take any chances...that is neither here nor there) Nonetheless, Chandler and I had the pleasure(I hope you hear the sarcasm) of riding to Atlanta for 4 hours in the back of an ambulance in the middle of the night in the rain.
We spent our third Saturday in a row with our Scottish Rite Family. Yes, we watched one more Dawgs game from a hospital bed being hooked to an IV pole. Thankfully, Chandler seemed absolutely asymptomatic!!! He was happy, playful,etc. But it was his 7 year old sister who was throwing up! Then Mom and Daddy started taking turns in the potty!!!! Needless to say, it was a thoroughly wretched weekend. Meme and Papa had to care for Chandler totally because I was tooo afraid to touch him, knowing his counts are spiralling downward.
We were finally given our walking papers Monday morning about 10:00am and had to be at Egleston at 11:00 for a meeting with the bone marrow transplant team! Yikes! We made it, had our meeting and arrived home around 6:00pm.
We were first told to come back Wednesday(tomorrow) but now they have told us that it will be Friday or Monday to be harvested.Frankly, I am glad to be delayed to have time to regroup, sleep for more than 3 hours at a time in my own bed, wash clothes, etc. Plus, it gives me another day to be with Jim Mac and Betsy!!
God just keeps blessing us! I was able to go to Betsy's Fall Festival at school tonight. She has Fall Break for the rest of this week, so we get some time together during the day since I don't have to rush back!
There are just so many people lifting us up in prayer. I can't explain how wonderful it is for me to go anywhere in this community and have strangers tell me," I read your web site daily." or just whisper "You are in my prayers." I know God hears each and every one of them. Thank you.
With "Will" and "Hope",
Kim
Tuesday, October 7, 2003 11:11 AM CDT Good Afternoon Prayer Partners,
Again, I apologize for the delayed report. Here's the latest...
onFriday Sept. 26 we came to get a unit of blood (no big deal)
We stayed in Atlanta at the garage apt. since we had to go to Egleston for harvest on Monday Sept 29.
But God had another plan in mind...Chandler got a line infection and began to run high temps. Saturday night. We were admitted Sat nite/ Sunday morning at 12:30 am. We've been on several IV antibiotics ever since.
Finally on Thursday Oct. 2 we got a clear culture from his central line. This was the first of 4 in a row...they stopped taking cultures after that.Yeah!
Our oncologist did indeed get Chandler started on chemo on Sunday, Oct.5, which was a day early! Making us get done a day early! Double Yeah!!!
However, there is still the issue of all these antibiotics...we must continue 10 days after a clear line! They have managed to change and finagle it so that we can get home as long as we have our meds. with us in the car and they have to be delivered to the hospital so he can begin getting another dose while riding home Yikes!! I will not be responsible for what I do or say if they don't get that delivery here!!!!!
Please pray that we can make it home safely and that his meds. are easy to give....even in the car!
I have been interrupted 25 times while explaining. I hope some of this makes sense. The point is I think we are going to be in Moultrie by this afternoon. Praise Jesus!
In His hands,
KIm
Saturday, October 4, 2003 11:19 AM CDT Hello Prayer Warriors,
Sorry for no update yesterday...computer was down. I do have good news to report today. The infectious disease specialist wanted to try again with another antibiotic to spare a surgery to take Chandler's central line(and another surgery next week to put a new one in). He was very confident that he could clear his line...and he appears to be right. We had a clear lab yesterday and another one today! All we need is for tomorrow's to be clear and we'll be considered good as new. Other than Chandler's bottom, he has been just perfect. We haven't had a fever since Tuesday morning at 10:00. Isn't God so generous with his blessings?
Since we must be here to clear his line, it is my hope that the oncologist will consider starting Chandler's chemo Sunday afternoon. If so, we could come home a day earlier. Yippee! He would not promise, but he is considering it.
Chandler is having a great day because his sis and Dad are here. Mom feels much better too. This has been one of the hardest weeks...I don't know why, but the messages left here have been more important than ever! Thanks, Teresa Kay and Lady for writing...if you don't mind...e-mail me with phone numbers kbooth@colquitt.k12.ga.us or just call the hospital we are in 316.
Again, I want to praise God for the tumor shrinkage that the doctors felt this week. Hopefully, when surgery time comes it will be an easy removal and the surgeon will be able to remove everything.
Papa is at a golf tourney today and tomorrow, while Meme is home recharging her batteries too. They will return to help when Jim Mac and Betsy have to go home to Moultrie. Pray that they can feel a peace while relaxing . It is so important that no one gets completely worn out during this marathon.
Thank you for all the prayers being sent our way! People are just so generous, I continue to be amazed! A very special "thank you" to Wendy for the Six Flags tickets. Jim Mac and Betsy are going this afternoon.
In His hands,
Kim
Thursday, October 2, 2003 2:47 PM CDT Good Afternoon Prayer Partners,
I have waited this long to write so I would have a sort of definate answer about Chandler. I have just talked to the Infectious Disease Specialist. He has reviewed our week , labs, etc. and has examined Chandler. He recommends changing only one of Chandler's antibiotics and trying to save the line. He insists that is because Chandler looks so good. He feels he is in no danger to keep trying and would save him a trip to the operating room. Of course, there is still the chance that this drug won't "do the trick" but he is pretty confident. This means that we will stay inpatient until sometime next week...next Thursday maybe? because we will forge ahead with chemo on Monday, Tuesday, and Wednesday. We've been here since Saturday, so this is looking to be our longest stretch yet prior to transplant. I am so looking forward to Betsy and Jim Mac coming this weekend. Time does drag.
Please pray that this infection clears soon and we can again concentrate on the eradication of this cancer...the REAL culprit here.
Pray for safe travels for our family as they come and go. Pray for me to stay somewhat sane in this small room.
We do have another small praise...Chandler's hiney is much better. Diaper changes are less noisy! He still wiggles a lot, but the screaming is much better. Thanks for the prayers.
I am touched by the "old" friends who have reconnected with me during this time...I cried to read messages from Lady, Allison, Chase, Tommy, Andrea, Georgia, Amy and others. It is awful that we reconnect because of our tragedy, but it is wonderful that people you haven't seen in so long care enough to write to me and pray for us!!! I love all of you so much. Thank you also to the folks who I've never met...only on this web page. You guys are very special too. Don't stop writing or praying. I count on you! Chandler is too.
In His hands,
Kim
Wednesday, October 1, 2003 11:52 AM CDT Good Afternoon supporters,
Well, we sort of have a "mixed" report to give today. I guess nothing is easy and cler-cut when taking about Neuroblastoma. The good news (besides the shrinkage of his tumor that I wrote about yesterday..that's just plain old awesome)is that Chandler acts completely normal. He slept well last night and ate a fabulous breakfast this morning. He has taken all his meds pretty well and simply seems great except for the raw bottom....and that is no small thing.
The confounding part for the doctors is that Monday's labs never grew a culture, but Tuesday's DID! As I said yesterday, we are now on 4 antibiotics. The oncologist is asking infectious disease specialists to review his cultures and get a recommendation from them on how to possibly change antibiotics in order to drop down to only 2 instead of 4, which of course sounds great to me. The nurse practioner also said that since he looks sooo good and is without fever, she thinks 2 should be enough. You see, he has only had 2 fevers in the last 3 days. On Monday, at 9:30am and on Tuesday at 10:00am and none since then. We are over 27 hours with no fever right now, which is great! They are just doing everything they can to avoid removing his central line. We want to forge ahead without another surgery if possible, but we do absolutely need that line to be infection free since they will harvest from it. We don't need a sneaky little bacteria hiding in his stem cells to be given directly to him during transplant. I think you can see how important it is that he is germ free!!!!
Now they are saying that we will not go home this weekend at all. They want us here for the weekend to keep administering IV antibiotics, and checking labs right up to Monday's chemo. I hate it but do agree it is a good idea. We just can not be too careful. We've come too far to have it fall apart at home. If we are here, anything can be handled QUICKLY, as it should be. Additionally, his white count has come back and his body can help the antibiotics fight.
This is for my Trinity family at home: I talked to Diane Tate this morning. She is a charter member of Trinity as was her mother, Toy(I do not know her last name). Diane is Mr. Howell McGraw's neice. I'm sure some of my Trinity family remembers who I'm talking about. I wish I had known how to get in touch with her for our 50th celebration. She was in college when Trinity was in its infancy so she was telling me a few tales about it. She mentioned Jane Sirmans(Tomlinson) and asked if Jane Holman was Joan's daughter...she'd read Jane's beautiful entry. She told a funny story on Bolen's grandmother, Mrs. Holman. I thoroughly enjoyed talking to her. I told her that I would try to get her a copy of the video(Gidge, I hope that's OK). I know she would enjoy it tremendously.
Well, keep praying that we nail this infection sooner than later and that this ends up being a "speed bump" on this long, winding road toward being healed. With God in it, how can it not all work out for good? As Beth Moore says, this will soon be part of our "was". I love all of you so much for caring about our family and for lifting our names before Jesus daily. The messages left here are so great.
Love,
Kim
Tuesday, September 30, 2003 12:13 AM CDT Good afternoon Prayer Warriors,
Once again Chandler is in great need of God's protection. The doctor just met with us and is adding 2 more meds to the 2 we are on now. It seems that the two antibiotics that we have been on since Sat. night have killed off all the "good" bacteria as well as the "bad" infection so a new infection has set up...so new med. to kill that. However, we hope, and I mean hope, that the cultures taken from him on Monday do NOT grow anything. If they do not...and it has been well over 24 hours,which is a good sign....then we are probably on the mend and will not have to pull the line from his chest. We still must do this 3 days in a row, so Friday is the earliest that we will be released. Also because of the strong antibiotics, Chandler's bottom looks like ground hamburger. Any mom whose child has been on antibiotcs knows what I'm talking about. He screams when changing his diaper...It is gut wrenching for me to have to clean him knowing how badly it hurts him.We do have some good "butt cream" that the pharmacist has made up to help.
We are still planning on being back on Monday for chemo #4. We will go home after that to wait until he is ripe to be harvested since we did not do that this week because of this infection.
On a very, very positive note, both the nurse practioner and the oncologist got a feel of Chandler's tumor today(just by mashing his belly) and both agree the it has definately responded to therapy!!!! They both said it has shrunk a good bit. It is our hope that it has shrunk down to a small size and in a place that is easily removed.Neuroblastoma tumors are notoriously difficult to remove...lots of tenticle-like fingers that wrap themselves around blood vessels and organs, so shrinkage is very important and they feel good about ours:).
Please pray specifically that our infections are now nearly gone and removal of his line is not necessary. Also pray that chemo#4 continues to reduce the size of his tumor. Please also remember my family at home and those who are with me to stay well and strong and supportive of Chandler. If love can heal him , we have no fears because he surely has plenty of that!
In His hands,
Kim
Monday, September 29, 2003 1:18 PM CDT Good Afternoon Prayer Warriors,
We are at Scottish Rite but this time it isn't for chemo or for the harvest that was to be today, it is because we have an infection.....a heckova infection! Chandler has chills and then spikes fevers of 103 to 105! Yikes! This started on Saturday night and has been going on ever since. Last night it was at 2:30 and got over around 4:00am, then he wanted to "play!" I was one tired mom when I laid back down at 6:15. I am not used to this, because I was so fortunate that both of my children are great sleepers since coming home from the hospital.
Any way, he is on strong antibiotics and should be better by tomorrow. We have to stay here until we have 3 days in a row of negative cultures. However,if there is no improvement over the next couple of days, his central line in his chest may have to be removed, as it is the source of infection. We'd wait a few days to let his body be completely free of the infection then he'd have to endure yet another surgery to put in another central line! It would be his third line. Please pray that they kill the infection and are able to save the line.
Right now, if all goes as the doctors think...
#1 Kill infection
#2 start chemo(4th round) on Monday or Tuesday of next week
#3 harvest stem cells
#4 last chemo
#5 remove tumor
#6 transplant
#7 radiation? a little?
#8 Rx by mouth for 6 months
#9 cure
This is sort of cryptic, but I hope it is understandable. The point is we've done a lot, but we do have a lot yet to do.
Chandler is getting some platelets today. The chemo has done a number on them and they want him to be able to clot if they have to remove his central line. Just being prepared for anything, I guess.
Please continue to lift us up in your prayers that the antibiotics do their job and kill the infection so Chandler does not have to endure another chills and fever episode! That is sooooo scary.
In His hands,
Kim
Sunday, September 28, 2003 10:44 AM CDT Hello Prayer Warriors,
Well, we've had un unexpected turn of events! After a flawless day getting blood on Friday and a fun day with the whole family(Jim Mac, Betsy, Chandler and I) we had to come to the ER last night. Chandler developed a fever!! It's a first but not uncommon for cancer patients. In the ER it went as high as 103.5! I was a nervous wreck. We arrived at the ER about 9:00pm and we finally got in a room about 12:30am. We were obviously exhausted and slept pretty well, just not long enough.
But again, God, the awesome God he is, had it all worked out for us to still be in Atlanta for the weekend, so getting to this hospital was so much easier than if we'd gone home to Moultrie 3.5 hours away.
Beth Moore was great, as usual. I'm grateful to Melanie Hawes for giving me her ticket, since she was unable to go. Beth certainly has way of speaking that really reaches women. There were 20,000 people in attendance.
No transplant on Monday. We'll have to wait until our next chemo to attempt that. We will be here inpatient until at least Thursday. Please, please, please pray for speedy recovery and that the antibiotics are effective quickly and completely. Jim Mac and Betsy will stay with us until about 3:00pm today then they will go home. My brother Chip is coming to be with me for at least tomorrow, I'm not sure what will happen after that.
I've got to run now.
In His hands,
Kim
Thursday, September 25, 2003 6:17 PM CDT Hello Prayer Warriors,
As always is with this disease, we have good news and not so good news. The not so good news is that we have to go get blood tomorrow (Friday) in Atlanta because Chandler's hemoglobin is very low. However, the up side is that his white cell count is not so low.(It is low for normal people, but for a cancer patient it's in the OK range...it's all relative). In fact once we get blood we could actually go to a not very crowded restaurant... not just a drive thru. Also, I am glad that Jim Mac and Betsy will join us for the weekend. This will be a first for them.
Another plus is that Beth Moore is speaking Friday night at Philips Arena and Jim Mac has urged me to join the other 30 women from our church who will also be there. Isn't God amazing how he just works things out? He knows I need to be fed and he's providing one of the most dynamic speakers ever to give me spiritual nourishment.
I am also glad to report that the primary reason that we are staying through the weekend, is because they have scheduled us for a stem cell harvest Monday morning. We will go to Egleston and be hooked up to the pheresis machine for 2 to 4 hours. They will unhook us and we go back to the garage apt. to wait to hear if they got enough cells. If not, we repeat the process Tuesday morning. This could conceivably take as many as 4 days or as few as 1. Of course, we are hoping for only 1 day. Once they've collected enough, we are allowed to come home until the 4th chemotherapy treatment which is the following Monday, October 6th. It just seems like we are clicking right along. God just keeps sending those angels to protect us and we praise him for it.
Once again our specific prayer request is for protection from infection, safe travels to, in , and from Atlanta, and ultimately, complete healing for Chandler.
I sure do appreciate all the people who visit this site. I do rely on the uplifting messages left here more than I can describe. They are written with so much love, it can sometimes be overwhelming. A simple thank you seems so inadequate, but it is heart-felt.
In His hands,
Kim
Friday, September 19, 2003 3:02 PM CDT Hello Prayer Warriors,
We have good...no, great news to report. The further inspection of Chandler's marrow was good news. It was just what Dr. George suspected....just healing marrow...absolutely NO CANCER PRESENT!!!(Theresa, it WAS squeaky clean!) Praise our heavenly Father!!! Once again he has blessed us. Additionally, Chandler has done so well with this chemotherapy this trip. No nausea and he has keep a good appetite. The nurses and other staffers here at the hospital have remarked how they can see that he has grown since our last stay. It is so good that Chandler has continued to progress normally even though all this awful medicine is coursing through his body. Again, I can't say it enough, Praise the Lord!
Since the marrow is clear, we will come home for probably 10 days, then we will come back up to Egleston and get hooked up to the pheresis machine to harvest stem cells. This could take anywhere from 1 to 4 days to get enough for his transplant. (Of course, we hope its just one day.) Then we forge ahead with round 4 of the chemo. Also, the doctors will be considering the best time to remove his tumor that is in his abdomen...either before or after the 5th chemo treatment.
Well, we are only a couple of hours away from going to the garage apartment for the night and then on to Moultrie in the morning. Thank you for your vigilence in praying for us. It is the constant prayers(Especially those asked at red lights:) that have delivered us this far and will hold us up through what is to come.
With a grateful heart,
Kim
Thursday, September 18, 2003 10:13 AM CDT Good Morning Prayer Partners,
Chandler was able to start chemo earlier today, thank goodness. We like getting it over with:).
The marrow was clear of cancer, but there was something else there that they want to test further. The oncologist says it appears to be marrow that HAD cancer in it,but the chemo killed it and what is left is trying to heal. Again, the marrow was clear, they've ordered the medicine for harvest, so we are good to go.
We will have chemo again in the morning and will have fluid all day to make sure his kidneys and bladder are flushed completely until 6:00 or 7:00 PM then we are allowed to go. I'm not sure if we will go to Moultrie or to the garage apt. here and drive home Saturday morning. I am inclined to go Friday night but it kind of depends on Chandler.
Thank you for the prayers and visits to this web page. My e-mail has been down all week so this is my only way to communicate with folks at home.
In His hands,
Kim
Wednesday, September 17, 2003 10:28 AM CDT Hi Prayer Warriors,
Day 3 has begun nicely for Chandler and Mom! I actually took a shower this morning before Meme and Papa arrived! This is a major accomplishment... as Chandler has jumped from his crib once, I am always afraid to let him sit in his crib without me watching his every move, plus there is always the chance of him pulling on his IV line. However, with Clifford on the TV, I managed (I did it in such a hurry, I hope I am clean...heee hee).
Today will reveal the results from the bone marrow biopsy taken on MOnday. Please pray that it will be clear for harvest. As afraid as I am about this transplant, I'm just ready to get it over with, if you know what I mean.
Meme and Papa had a nice visit yesterday from one of Mama's former college roommates and her husband. The four of them went out to dinner and had a really good time remembering fun times and catching up with one another. I was glad to see them laughing!
Chandler will begin his chemo around 1;45 today. As always, I ask that you pray for this medication to kill, kill, neuroblastoma cells and to spare his good cells. Please pray that the medical staff here under God's healing hand continues to lead us to the day of no more disease. Today we will cross over the "Hump"...meaning the halfway mark of the chemotherapy that comes before the transplant, a milestone that a month ago seemed an eternity away. God has delivered Chandler through so much and we thank Him and praise His holy name for it!
If I can get the computer to cooperate, I will report the bone marrow results as soon as we get them, so check back, if you have time.
In His hands,
Kim
Monday, September 15, 2003 1:42 PM CDT Dear Prayer Warriors,
We are back at Scottish Rite for our 3rd round of chemotherapy. Right now Chandler is having his bone marrow removed for biopsy. We certainly pray that it will be clear for harvest.
Once they wheel him back up to the cancer floor, we will feed him....he hasn't had but 3 oz. of formula and that was at 7:30 this morning!! Then we will start the chemo....it will go for 5 days this time. The nurse practioner said that this round of chemo is less likely to cause us to come back for fever than the last round. We surely hope so, since we only came back for blood last time.
If you missed the gospel sing at Autreyville Baptist Friday night, you really missed a blessing. God was so very present in that building. I loved all the songs that were sung and the singers who took so much time to prepare and mustered up the nerve to get up there in front of a packed house to exalt Jesus'name! I especially enjoyed seeing and hearing from former students. Chandler stayed until intermission and then Meme and Papa took him home to go to sleep! He had no idea that all that was for him! But of course, we will tell him and tell him when he gets older. I plan to make him tired of hearing what all Jesus, his Meme and Papa,the rest of our very extended family and our wonderful community did for him when he was sick.
If you read this today(Monday) wish Meme a happy birthday. It ain't everyday you have a birthday that ends in zero! I hope I will be as healthy and pretty as she is in 24 years! I do thank God for having such a supportive family. Jim Mac and I could not bear this load without them.
More later,
Kim
Monday, September 8, 2003 8:52 PM CDT In case you didn't know it...God is sooooo good! Chandler's bloodwork was great today! We are no longer "house-confined". Hip Hip Hooray! We went to Winn-Dixie today, and it was actually fun! That medicine really does the trick. In 4 short days, Chandler went from having very dangerously low number to nearly all normal ones! Like I said, God is soooo good!
We are now getting ready for a good old gospel-singin' time Friday night at Autreyville Baptist Church at 7:30 (not 7:00, as I'd said before). I hope there will be a good turn out. I was excited to hear that my co-worker Eric Croft is going to "wiggle his vocal cords a bit". I'm also glad that Chandler's 79 year old Great Gran will be coming, thanks to Meme and Papa.
Monday, Septmber 15 we have a bone marrow aspirate (again) and chemo will also begin on that day. We'll be there all week for this chemo. Keep those strong prayers coming! They have certainly protected him thus far. We love and appreciate all of you who visit this site and follow up with wonderful prayers for our family.
Good night,
Kim
Friday, September 5, 2003 8:05 AM CDT Back home in Moultrie this morning, and boy, are we glad! Chandler handled the blood transfusion beautifully. I hope his harvest goes as flawlessly. Following the transfusion, we spent the night in Atlanta to make sure there would be no negative reaction to the blood. God was faithful and protected him. We went back the next morning to check his blood levels. The hemoglobin had definately improved but the white count had gone even lower....as was expected. He is dangerously low...he can't fight ANYTHING off, even normal bacteria in his own body, so we are staying in and staying away from people. I must wash my hands ten thousand times a day...its like I've got OCD!!!
The nurse did remind me that since his good cells are dying , so are the awful neuroblastoma ones! Of course we are glad about that.Today(Friday) should be his lowest day and then the neupogen should be kicking in and bouncing his white cells back up. We hope that Monday's blood work will confirm that.
Please continue to pray for protection for Chandler against infection. We would love to stay home this weekend and next week. We are scheduled for next bone marrow aspirate and chemo to begin Monday Sept.15 ( Me-Me's birthday).
The Gospel sing is still planned for Friday, September 12 at Autreyville Baptist Church at 7:00. The organizers are working hard to make it a fun, God- filled celebration of Chandler's victory over this cancer. Thank you for all the prayers for this event and for our whole family.
Love,
Kim
Wednesday, September 3, 2003 4:05 AM CDT Quick update this morning...
Chandler's counts are very, very low. So low in fact that we are headed up to Atlanta this morning to get some blood. His white cell count is below the "magic" 500 mark, so he could get an infection and not be able to fight it off, but that's not why we need blood...its the hemoglobin that we need now. We will get blood for about 4 hours today then I guess come home either tonight or in the morning. Please continue to lift up Chandler in prayer. Pray for no fever or infection, safe travel to and from Atlanta and that this transfusion works exactly as it should to help him stay well.
THANKS FOR YOUR PRAYERS OF PROTECTION!
Do you like the new pictures we added?(Thanks, Misti!)
Love, Kim
Friday, August 29, 2003 6:56 PM CDT The Booths are all home, hopefully until September 15! Hooray!
Chandler again did remarkably well taking his chemotherapy this trip. This time it was set of drugs that the oncologist warned would probably knock his counts so unusually low that we are likely to have to go back in between because of fever. Of course we hope that this does not happen. Please pray for protection from fever and infection for Chandler.
We received news from the bone marrow aspirate after we got home on Thursday. The samples were taken from both hips. One side was clear but the other still had cancer present. We will repeat the bone marrow test when we return on the 15th. If they are clear then (the doctor says it probably will be...so close this time) we will go ahead with the third round of chemo and come home for a few days. When his counts begin to recover, we will go to Egleston for a few days to harvest his stem cells for the transplant to come.
Chandler has enjoyed being home today. His dad had a new swing on the swing set for him when we got home. He has pushed and pushed him in it.
Chandler has learned a new trick. He brings you a pair of shoes when we wants to go outside(its hilarious) It doesn't matter whose shoes they are, he just understands that
shoes are for going outside! So if you ride by and Jim Mac has on Betsy's sandals...
Chandler, Meme, and I went up to see Sara Beth on Wednesday. She seemed to be doing much better than our last visit. She gave Chandler a precious little white angel bear that plays "Jesus Loves Me" when his hand is squeezed. Sara Beth was able to show Chandler how it plays. Please continue to lift up their family in prayer also, as they haven't been able to come home to Fitzgerald any throughtout this ordeal. I know how rejuvenating a trip ,however brief, home can be. Also, I wanted to tell everyone who reads our web page that last Saturday we rode down to Valdosta to "get out of the house". After looking around a bit we were on our way home when we ended up behind a car with "Pray for Sara Beth" written on the back windshield in purple and yellow paint. It was a Ben Hill county tag. I thought it was so sweet!
Pray for fever protection for Chandler!
With "Will" & "Hope"
Kim
Wednesday, August 27, 2003 9:38 AM CDT Hello Prayer Partners,
It is a good morning at Scottish Rite for Chandler's family. Yesterday Chandler went in for surgery to put in a bigger central line (for the harvest) and to check his bone marrow. Please pray specifically that his marrow is clean and ready to be harvested. The sooner that is done, the better. We will do the harvest at Egleston as well the transplant. We have visited that facility and are well impressed. The hospitals are actually both Children's Healthcare of Atlanta, just two campuses! We will still be under the care of our same oncologists, but there we will have transplant doctors too. Whew! We are surrounded by so many smart physicians plus, we've the very best physician ever on our side, Jesus Christ Himself!
Chandler has tolerated the chemo well again! We are ever amazed at his strength. We have chemo until about 1:00AM and then we are done for this trip! We should be allowed to go home Thursday morning.
If you get a chance, I encourage you to read through some of the messages that have been left for us. They are the most wonderful, touching messages ever. They lift our spirits so much. Thank you for giving us your support.
In His hands and lovin' it,
Kim
Friday, August 22, 2003 2:06 PM CDT Only two more days of freedom then it's back to Atlanta for Chandler and me. We have four meetings with different doctors on Monday then surgery to change his line in his chest to an even bigger one and to check his bone marrow for response to the chemotherapy thus far. Then we have chemo for only two days this time! Hopefully to return home maybe on Thursday, August 28.
Please remember Betsy and Jim Mac as they stay at home and us as we travel.
Chandler began to lose his hair on Wednesday. It was sad, but we knew it would happen. Jim Mac and I decided to just take him to the barber for that "Mr. Clean"look. His head is so cute! (I'm not a bit partial, though). As we take pictures to be developed, we will add to the ones on this web page.
Thursday's bloodwork was also good. Good enough in fact that I didn't have to give him a shot last night! Yeah! In fact, I don't have to give another until after next week's chemo.
We are excited about the gospel sing at Autreyville Baptist on Friday Sept. 12. Hope some of you will be able to come:)
More later!
In His hands,
Kim
Tuesday, August 19, 2003 5:20 AM CDT Good news to report. We received Chandler's blood work numbers and he did not go as low as the nurse in Atlanta had anticipated.So, being the nervous Mom I've become, I worried that this was somehow not good. I called my other cancer Mommy,Carol, who told me, "Girl, go put a candle in a twinkie and celebrate!" So I guess I should:-).
He seems to be doing very well. You can tell how much he loves to be home.(Me too!) We go back to Atlanta on Sunday afternoon and go to a meeting with the transplant doctors at Egleston on Monday. Then we go for a bone marrow aspirate on Tuesday at Scottish Rite and then chemo. after that on Tuesday and Wednesday. Hopefully to be coming back home on Thursday. I'm so grateful that we have only two days this time. That 6 days on the IV pole was not fun!
If his marrow looks "clean" they will harvest his stem cells after this 2nd round of chemo.("Harvest"...Yuck..Sounds like something out of a Steven King movie, doesn't it?)As long as God is part of this I'm OK, though!
Betsy, our 7 year old is enjoying second grade. Jim Mac is continuing to sell advertising for the Tv station that is coming to Moultrie.And I try to remember all the Rx, wash the clothes, call the insurance company, call the doctors, etc., etc., etc.
I mentioned the gospel "sing" in my last entry. It is to be at Autreyville church on Sept. 12,that is on Friday. Hope some of our Moultrie friends will be able to attend to support us!
Thanks for continuing to lift us in your prayers. Where would we be without them? God is so good.
Love,
Kim
Friday, August 15, 2003 9:35 PM CDT Chandler continues to be "fever free" for now. The nurse in Atlanta called to give me his results from Thursday's blood work. She said to expect a pretty big drop on Monday's blood work. She reminded me once again that if he starts to act differently or has, God forbid, a fever to hit the ER immediately! (I think she is expecting us to be coming up there.) But, maybe not. I just know that I am paranoid, taking his temp. frequently.
A man at Autreyville Baptist Church is organizing a gospel "sing" for Chandler on Friday, September 12. I taught his grand daughter a few years ago and Jim Mac has sold them some advertising on Channel 44. I am so amazed at all the love that has just poured out for our baby boy! Thank you Mr. Bob Bryant and all who are helping to make this happen.
Continue to speak Chandler's name in your prayers. Other than a bout of pretty painful diaper rash and some runny diapers, he is actually doing pretty well. God is in control.
With "Will" and "Hope",
Kim
PS Way to go Sunset School for making AYP!!
Tuesday, August 12, 2003 8:42 AM CDT Well we are finally home in Moultrie. Thank Goodness. We entered the city limits around 6:30 PM Saturday. I realized when we were in Tifton that I needed to get Chandler's anti-nausea medicine filled and it was 6:00! I called Jim Mac who then called Gene West(our pharmacist) at home! He readily agreed to meet me at the pharmacy to fill his Rx. Isn't it great to live in such a "giving" community?! I bet in Atlanta they don't have service like that! Mr. Gene did not have the particular medicine that I needed so he called around some other pharmacists (who were probably at home too) and got what we needed and DELIVERED it to our house himself....now I know they don't do that in Atlanta!
Chandler has done so well. He has only vomited once since we've been home. His appetite has returned also. Last night he ate as many butterbeans as I did! He also ate Mac&cheese and baked ham. I guess he was as tired of hospital food as the rest of us.
We continue to be amazed at how strong Chandler has remained throughout treatment so far. God just keeps blessing our family. Prayer is such a powerful thing. Thank you to everyone who reads this website and then prays for our complete recovery.
With "Will" and "Hope",
Kim
Saturday, August 9, 2003 9:54 AM CDT We are still at Scottish Rite waiting....and waiting....and waiting to be dismissed. Chandler has done so well with his chemo this week. Only two bouts of nausea so far. His appetite is not what it should be, but the Dr. said that is normal and it will return after a few days.
We are scheduled to return here on Monday ,Aug.25 for a check of Chandler's bone marrow (it will be a needle biopsy from his pelvis). This will give the doctors an idea of how "clean" his marrow is and how soon the harvest will take place. After the biopsy, we will begin our second round of chemo, I guess Monday or Tuesday. It will be shorter...only two days of it. Then we will probably come home. I think after we go home and his white count starts to return to normal, we will come back for them to harvest stem cells. These cells will be saved and used as a rescue following the "transplant" that will come several months from now. (They go ahead and get the cells early on before a whole lot of chemo has weakened him.) As it stands now we will have a total of 5 rounds of chemo(we've finished one of them now) before removal of the tumor in his abdomen. After the tumor has been removed then we'll have the transplant!
I pray that there will be no reason for us to have to return here before the 25th ie., no fevers or other problems. Please continue to lift us up in prayer that Chandler will feel good and enjoy his time at home before having to face chemo and surgery again.
One more request...there is a beautiful 16 yr old girl here from Fitzgerald, GA. Her name is SaraBeth Rogers. She was involved in a horrible automobile accident and is in rehab. She has had 2 brain surgeries this week alone! She and her sweet family are members of my "Bigmama's and Aunt Kathy, Uncle Walt and Cousin Katie's "church, Arbor Baptist there in Fitzgerald. They have put us on their website so I wanted to tell our prayer warriors about SaraBeth. She has a web site at caringbridge too.
Your lovely words of encouragement continue to sustain us...and so does He!
With "Will" and "Hope",
Kim
Friday, August 8, 2003 4:12 PM CDT Our luck has run out with regard to the nausea...:( Uncle Chip was holding Chandler about 3:00 and all of the sudden here it all came!! He had not even had today's chemo yet! But once the yukk was all out he has not done it again. I hope we don't have a repeat!
Chandler has really been such a trooper throughout. He keeps me brave.
Thank you for all the wonderful messages that you have left on his guest book. We treasure reading them. Keep them coming!
Love,
Kim
Thursday, August 7, 2003 6:18 PM CDT Today Chandler is taking his fourth (and next to last) chemo of this round. There will be four more rounds in the coming weeks. So far he has done beautifully....no nausae yet:)!
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