History

Journal History

Tuesday, October 18, 2005 9:41 PM EDT

To say that we are long overdue for an update is the understatement of the year...

We are all doing well. We have had a terrific summer and are settling into a new school year. I will do my best to recreate the missing months since our winter update

Grace is wonderful. She finished up first grade after having a super year. She had a sweet pair of teachers who made her feel so special. Mrs. Walker went out of her way to accommodate Grace’s hearing issues. We were really sad to see the year end. She did really well academically much to our relief...you just never know what those chemotherapy agents will do to a young child’s brain. We have to brag a bit and say that she only missed 2 spelling words all year and never once had to “flip a card”. She found the joy in reading and we frequently find her long after bedtime huddled under the covers with a flashlight. She played spring season soccer and while she is certainly not going to play professionally, she at least ran after the ball this year instead of talking to her teammates, picking flowers, etc. We think that she likes to play to get the trophy that each child gets at the end of the season. Horses continue to be her great love. What started as a way to strengthen her legs has turned into a sport that she adores and excels at. She rides American Saddlebreds which, to Mom’s delight, are generally quite large. She has learned to trot and canter. Sometimes I look at her up on that powerful creature and she looks so beautiful that she takes my breath. She also loves to swim and we have spent a great deal of time hanging out at the pool this summer.

Second grade is off to a good start. Her teacher seems quite capable and Grace is enjoying getting to know her. She is very nice and she has a son only a bit older than Mary. Grace thinks this is very cool. I think she plans to swap baby stories with her teacher. The class is filling up a jar with cotton balls for good behavior for which they will be rewarded and Grace is quite excited. We get a “cotton ball update” at the end of school each day We are looking forward to another good year and are very thankful that the big girls go to such a great school and have always had such fabulous teachers. Health wise we have reached a few milestones. Grace is only seen at Brenners on an annual basis now. We do not do any scans etc. She does have an annual Pulmonary Function test (PFT) and echocardiogram to check for damage. The echo has always been fine but the PFT does show some abnormalities. It is hard to gauge just how significant this is because the screening is not very kid friendly. It involves a lot of directions and that combined with being in a glass booth does nothing for the hearing situation. The docs are content to just keep an eye on her for now (which what could they even do?). They feel like her day to day functioning is a better indicator of her lung capacity. We have never seen her become winded even after she swims the length of the pool underwater. Also, she just finished a fun run to benefit Brenners and she was singing the entire mile So we are just going to not worry about it for now. You can drive yourself crazy with this stuff. We are also on an annual basis with Chapel Hill for hearing aids. She got some new ear molds in the spring...pink with blue swirls (think cotton candy). Never tell your kid that they can pick out their own colors unless you mean it

Our sweet Laura started Kindergarten this year She is loving it She has the same teacher that Grace had which is really nice because you already have that relationship established. She has made a little friend and they stick together like glue. She adores her teachers and gives us a word for word briefing of everything that her teachers say each day. She loves being with Grace and they get to see each other at lunch. They are so sweet walking in together each day. Laura is a very pulled together girl whereas Grace is a bit of a dingbat. Laura always reminds Grace to get her lunchbox, etc. as they get out of the car in the mornings. Laura says, “I have to help that girl ” They continue to be best friends and have gotten even closer this summer. It is our joy to watch them. Laura has totally different interests than Grace. She is our dancer. She took tap and ballet last year and had a recital in May. We were so shocked that she actually got on the stage. She is a very shy little girl who does not like to call attention to herself. I am not sure if it was the costumes, the lights, the music, the applause, or a combination, but that girl marched herself out onto that stage and danced her heart out as if she weren’t the least bit afraid. Of course Mom and Dad weren’t just a little bit proud. Grace went with Mom to get Laura some flowers for after the show. There is a wholesaler near our house that always has beautiful things. The lesson here is never take Grace to pick out flowers...Laura had the biggest bouquet ever because her sister just kept saying...”but she would love these sunflowers, these irises, etc...” Laura learned to swim this summer complete with jumping off the diving board. She has turned into quite the little fish.

Who knew the joy that baby Mary would bring to our lives? She had her first birthday on July 6. She continues to be the sweetest girl. She is currently into kisses and she showers us with them all day long. She kisses our legs, our necks, our shirts, her toys, and of course those sisters. She is nuts for those big sisters. Laura has always called Grace “sissy” and so Mary calls Grace “sisa.” , Laura is “la-la” and all dogs are “duh-duhs.” She is walking all over the place and adds new words/animal sounds daily. The big girls are so good with her and they all play so well together. They think that everything that she does is funny and they never get frustrated with her. Mary misses the girls now that school has started and heads down the sidewalk whenever it is time to pick them up. Mary is loving spending her mornings playing outside now that the weather has turned cooler. She likes to go to the barn with Grace for riding lessons because she is crazy about animals. She loves to pet the horses and she spends a good bit of her day chasing our dog, Sassy. She is just sunshine and is such a blessing.

Mom and Dad are doing fine too. Mom had to have her gallbladder removed unexpectedly in May which made the end of school stressful. Grace and Laura had lots of parties, special activities, etc. and Mom was determined not to miss them. There were a few glitches with the surgery and the recovery time was a bit prolonged, but all is well now. Dad is doing good. He just finished running in the Brenners Classic 5k (as well as in the fun run with Grace). His favorite part of summer was not having to get 4 women out of the house by 8:00 every day

September 29 marked the 5th anniversary of Grace’s diagnosis. I can remember thinking that she would be in 2nd grade whenever we reached that milestone. It seemed like a lifetime away and yet here we are...Most days we find ourselves filled with all of the daily activities like meals, laundry, homework, etc. and we are just regular people. These days can go on for weeks or even months without pause. But let there be a fever, an upset stomach, a bruise on the knee of a kid who just climbed a tree, a cold that takes to long to go away, and the heart stopping fear can be back in an instant. It can be with any of the girls, not just Grace. Fortunately, it never lasts for long and it doesn’t happen often and we resume our lives. That being said, I don’t think that you go back to who you were before your child was diagnosed. That is not necessarily a bad thing. We live our lives very fully. We don’t dust very regularly anymore and our cars don’t get waxed very often. We spend more time reading aloud to the big girls about the antics of Junie B..Jones or the Boxcar Children (currently their favorite books) than cleaning our horribly messy garage. We just don’t want to regret one moment of the precious gift of time that we have been given with these wonderful girls. There is not a day that goes by that we do not think of one of the children that we went through treatment with or the surviving families of those that lost their battle. Their stories often color our reaction to the girls whenever we hit a trouble spot during our day...homework that has been forgotten at school requiring an extra trip to retrieve it, ice cream after the dinner that left the vegetables on the plate, playing Polly Pockets on request instead of sorting the mail. Nothing matters except being with the ones that you love and sharing their lives with them. We have learned a lesson from all those heroic children and to ignore it would be disgraceful.

Thanks for continuing to check on us, even though we are so bad about updating. We are forever grateful for all of your prayers and support.

Tuesday, December 21, 2004 3:14 PM CST

Hi everyone –

Everything is going great at the Cain house. Mary is such a sweet baby. She is nearly always bright and cheery (as long as she is getting her fair share of the family’s attention). She is very nosey and enjoys watching all of her big sisters’ antics. Fortunately, she is adaptable and quickly got used to being dragged away from a nap to go pick up or drop off Grace and Laura at one of their many events. Mary loves to play with toys, to be entertained by her sisters, playing in her “exersaucer,” and to sip cold water from a bottle. She’s starting to eat baby food. Her favorites are sweet potatoes, squash, and carrots. Pears and apples are okay. And she’ll tolerate peas. Green beans….we’re going to try those later. Mary is babbling more each day. Her first word was Dada, just like her sisters. She’s almost ready to graduate to her bath seat in the real bath tub. This will thrill Grace and Laura since they will all be able to take a bath together.

Laura continues her love affair with Mary. She has been so understanding that Mary must come first some times. She is very good to “baby sit” Mary if Mom or Dad leaves the room. She is quick to call for us if Mary fusses and she always takes things away from her that she shouldn’t have. It is very important to Laura that Mary is well taken care of. Laura is having a good year in preschool. She recently sang in their Christmas program. She made us proud by doing everything “just so.” Laura is proving to us that she’ll be ready for Kindergarten next fall. Dance class is a highlight of Laura’s week. She loves to learn her “dance moves” and has made new friends in her class.

Grace…is still Grace. She is nearly always happy and thinks that everything is fabulous. First grade is going well. Grace is making new friends and loves her teacher, Mrs. Walker. She brings home lots of stories about her day. Horseback riding is remains a weekly highlight. Grace is in transition from the “easier” horses to the “moderate” ones. She has also started using two reins instead of one. Grace takes her lessons with one other rider. This is the only area where Grace shows a competitive sprit. She loves to trot and to pass the other rider, even though that isn’t the point. Grace enjoys singing in Macedonia’s junior choir. They sang the introit during the worship service the first Sunday in Advent. They will also sing for our Moravian Lovefeast on Christmas Eve. The Christmas Lovefeast is a beautiful tradition of singing and fellowship. It is becoming a tradition for our family as well.

Grace went for her semi-annual check up at Brenners earlier this month. We got lots of good news. Most importantly, her exam and blood work looked great. We also found out that, starting next summer, Grace will go to annual exams! The folks at Brenners have also added a new Pediatric Oncologist to run a long-term follow-up clinic. Previously, Duke had the only long-term clinic in NC.

The Christmas season has been busy for us. The girls have been to a number of parties. One of their favorites is the Outrageous, Courageous Kids party that is held for the Pediatric Oncology patients at Brenners. They have great kid-friendly foods (Chik-fil-a nuggets, subs, potato skins, doughnuts, cake squares, chips, fruit, veggies with dip, mini pizzas) that our girls and Mom and Dad look forward to every year. Santa visits and gives each kid a toy. Of course, games and crafts abound.

Thanks for continuing to check in on us. I’ll try to post some new pictures soon. We really need to “go digital” so that will be easier.

Please continue to keep all the kids (and their families) that are still in the battle in your prayers.

Tuesday, September 21, 2004 12:57 AM EDT

Hi everyone -

I guess we need to update and let everyone know that girl #3 hasn’t gotten the best of us! Actually, Mary continues to be such a sweet baby. She is so easy and so forgiving of us dragging her around all day as she and Mom chauffer her big sisters to all their events. Mary just had an appointment with the pediatrician. She got four shots L, but everything checked out well. She is nearly off the growth chart (90% weight and 95% height) much like Grace was at this age. She is already a charmer, so loves to smile and “talk.” Yesterday she learned to hold on to rings and shake them around. Mary was quite proud of herself. Both Grace and Laura are crazy about their sister. Laura loves to “attack” her with hugs, kisses and singing. Grace likes to hold her in her lap and talk quietly with her. They both love to put on “shows” for her with lots of singing and dancing. Mary puts up with and actually enjoys all their antics.

Laura is having a great year at preschool. She matured so much over the summer. She comes home every day and tells us what she has done, who she played with, and what that “crazy Miss Terry” did. Miss Terry was Laura’s Sunday School teacher last year and Laura was thrilled to have her for her preschool teacher this year. Laura started dance classes a few weeks ago. She takes both tap and ballet. She has talked about ballet for at least a year now. She couldn’t be any happier. Her favorite part is putting on her “dance outfit.” She picked out the frilliest practice leotard that she could find. It is lilac with a shiny skirt complete with bows and rosettes. She has also selected a lilac ribbon for her hair complete with sparkles. She is definitely something to behold.

Big sister Grace is doing well. She continues to enjoy her riding lessons. She rides Saddlebred horses in the “saddle seat” style. She is making a lot of progress. We took a season off from soccer this year. We decided that it might be a bit much for all of us this year. 1st grade has agreed with Grace. She loves Mrs. Walker, her teacher. Grace is already spelling better than Dad and her handwriting is better that both Mom and Dad. It is obvious to us that everyone is making sure that Grace hears everything that’s happening in the classroom. Grace is ready to start Junior Choir at church which will pretty much round out her week.

Please pray for Jake Linville. Jake is a Davie County boy who was diagnosed with AML in May. He is currently at Duke undergoing a matched sibling bone marrow transplant. His website is www3.caringbridge.org/nc/linville/.

Thanks for checking in.

Monday, July 12, 2004 12:46 AM EDT

Hi folks –

We wanted to let everyone know that Mary Elizabeth arrived safely at 2:11 PM on July 6. She weighed 9 pounds and 1 ounce and was 21.5” long. We were able to bring her home the next day (with a little fast talking from Mom). Grace and Laura are absolutely thrilled. They tell us that they are “drowning her with kisses.”

Mary is such a sweet baby. She is so easy! We hope she will maintain her easygoing manner…

You view Mary’s hospital pictures by going to www.ohlooknps.com/fmc/ The family password is 14033.

Thanks for checking in….

Tuesday, May 18, 2004 4:52 PM

Wow…it has been a long time since we’ve updated!

Grace and Laura are both doing great. They have both been quite busy this spring. Laura just finished her last day of preschool today. She loved Ms. Nancy and her classmates, but I think she’s excited about spending even more time with Mom. Grace has a few more days of Kindergarten. She’s had a great year. I can’t think of a thing that could have gone better. Grace and Laura are both involved in soccer again this spring. Grace continues to love her weekly riding lesson. We’ll probably take a little break from horses this summer. Laura is going to observe a dance class this week. She wants to take ballet and tap in the fall.

There is thankfully very little to report on the medical front. Grace just went to Chapel Hill to visit her audiologist yesterday. Things went well. She has hinted a couple of times that we may want to consider tubes in at least one of Grace’s ears. We’ve left that suggestion on the back burner. Grace and Laura both LOVE to spend the whole summer at the swimming pool and we don’t want to take that away from Grace unless we have to. Grace is going to tomorrow to get the last of her “make-up” immunizations. She lost them all at transplant and it seems we’ve been working on bringing them up-to-date forever. Grace will have an annual exam with several tests this summer at Brenners. We’ve yet to get that scheduled.

Susan is doing well with her pregnancy. Our due date is June 30. We found out in January that we are going to have another girl! Grace and Laura are thrilled!!! We are excited too. We still haven’t gotten everything ready for the baby. I guess we are counting on this baby coming late just like her sisters. I hope we’re right.

Thanks for continuing to check in and keep us in your prayers.

Monday, December 29, 2003

SEE NEW PHOTOS......

Happy Winter!

I guess we’ve progressed from a daily, to weekly, to monthly, to now seasonal updates. In our world no news is good news.

We had a great holiday season. The girls both enjoyed all the festivities leading up to Christmas. We went to all our standard outings this year – Christmas concerts, the candle tea at Old Salem, a live nativity, the lights at Tanglewood (several times), and gatherings with family and friends. We added something new this year. The stables where Grace takes riding lessons had a Christmas party in their barn! We didn’t know exactly what to expect, but it was great. They had tons of delicious food, activities for the kids, and a DJ. Grace wasn’t feeling well towards the end of the night, so we left before the kids decorated the horses for Christmas. (Grace ended up having strep, but she was back to her old self after about 24 hours on the antibiotics).

Laura made us proud by singing in both the church’s Christmas talent show with her Sunday school class and in her preschool’s Christmas program. She did a great job in both performances. We weren’t sure how she would feel about being in front of such a big crowd, but she couldn’t have done any better. Grace got her chance to sing with her class in the talent show as well. Grace also sang with the Junior Choir at this year’s lovefeast. Moravian churches celebrate “lovefeast” several times a year. It is a special service of singing, fellowship, and worship. The Christmas lovefeast is very close to the heart of most Moravians. Our church has three services on Christmas Eve each of which is packed with church members and many folks from the community. As Grace was singing the introit with the other girls she was beaming and looked so joyful. Tears filled our eyes as acknowledged the miracle of her standing there so happy, strong, and healthy. We had started the day feeling a bit overwhelmed and frazzled, but that moment brought home the true meaning of Christmas. Nana, Mawmaw, Pawpaw, Aunt Teresa, Uncle Mark, Hannah, Ben and Aunt Rene were all able to attend with us.

We’ve all been enjoying the break from school. We’re trying to mend from the inevitable ear infections, colds, strep, etc. that seems so hard to keep away this time of year. The girls have made the most of the warm weather by trying out their new roller skates, Frisbee, and bike.

For those of you who haven’t heard, we are expecting again. Susan is due on June 30. Since Grace and Laura both came after their due dates, we’re thinking we may be able to have one great big triple birthday party in early-July each year. Grace and Laura are both very excited. Everything is going smoothly this time. Susan is having some pretty tough “morning” (all day long) sickness, but she has been able to keep enough down to stay hydrated. We’ll be having a Level II ultrasound in a couple of weeks.

As always, we have a few prayer requests. Jake Courtney, passed away a few days before Christmas. Jake was diagnosed a few weeks after Grace, and had his transplant at Duke as well. He had relapsed some time ago and was never able to get back into remission. Jake was a great kid and he fought hard. We celebrate that he is with Jesus and will never feel pain again. But, the pain must be agonizing for his parents. Please join us in lifting them up in prayer. Morgan Barnes also needs your prayers. She is doing quite well, but there was some mystery gray area on one of her most recent scans. We’ve experienced these “gray areas” or “false positives” in the past and it can be very unnerving. Please pray that Morgan’s family can find peace and not let negative thoughts interrupt these happy days with Holden and Morgan. This is easier said than done….

Thanks so much for checking by….

Wednesday, October 15, 2003 12:54 AM CDT

Hi everyone -

Wow has it been way too long since an update??? I guess that's because weÂ’ve been so busy lately. We went to the beach this past weekend over GraceÂ’s fall break. We had a great time. The YountÂ’s were there as well and our girls enjoyed playing with their three girls. Mawmaw and Pawpaw came down while we were there and we got spend a day with them as well.

Grace really loves kindergarten! She gets up every day ready for a new adventure. If we have any trouble getting her out of the bed in the mornings, we just tell her that we're going to have to call Mrs. Tew and tell her that Grace isnÂ’t coming to school that day. Grace immediately hops up and starts heading for the bathtubÂ….

Grace got her first report card last week and sheÂ’s doing well on everything. She even got a satisfactory for Â“avoiding unnecessary talking.Â” IÂ’m not sure that Mom or Dad ever got an acceptable mark on that line. Grace is going on a field trip to Dan Nicholas Park on Friday and Mom gets to tag along.

Grace continues to enjoy her weekly horseback riding lessons. It seems that riding is her Â“thingÂ” for now. SheÂ’s making very good progress. Grace and Laura are both playing Soccer as well. They both enjoy it, but Laura seems a bit more driven than Grace. Grace didnÂ’t have a coach at the beginning of the season, so guess what Dad got suckered into? It has actually been a lot of fun to coach GraceÂ’s team, although I think the kids know more about the game than I do! The Soccer season is winding down so we may try 6 weeks of Basketball, much to MomÂ’s delight. Grace also started junior choir at church last week and she had a great time.

Laura is doing very well in her twice-weekly preschool class. She loves Â“Miss Nancy.Â” Laura often corrects our barbaric behavior based on Miss NancyÂ’s rules. We wish she only listened to us as well as she does Miss Nancy. Laura scared us to death a few weeks ago. She came into the kitchen where Mom was washing some dishes. She was choking and acting like she might throw-up. She eventually sputtered out, Â“I lost my penny. I had my penny in my mouth and now I canÂ’t find it.Â” To make a long story short, Laura did swallow a penny. She had an x-ray to determine where the penny had lodged itself. It was in her esophagus (not the greatest place) so we had to take her back two days later to confirm that it had moved down her GI tract. It had, but after inspecting every BM for THREE WEEKS we finally had a repeat x-ray to confirm that she had passed the penny. Thankfully, Laura did sneak it past us.

The funniest part of the story occurs later the same day that Laura swallowed the penny. Everyone had calmed down and we knew that everything was going to be okay. Mom had gone over and over with Laura not to place anything in your mouth that isnÂ’t food (which she has never been bad to do). Just a short while after the lecture, Laura had a paperclip in her mouth trying to swallow it!!! That kid has a mind of her ownÂ…Â…

Mom has been substitute teaching at Shady Grove a few days a month, which has been a lot of fun. SheÂ’s also substituted at Macedonia Preschool this week, which Laura thought was fabulous. Today is MomÂ’s last class for her teaching renewal!!! No more classes until 2005!

I nearly forgot to mention that Grace and Laura entered the Dixie Classic Fair again this year. They decorated apples. This yearÂ’s theme was farm animals. Laura decided to make a chick. We glued yellow glitter on a yellow apple, added yellow feathers for wings, and glued on a yellow Styrofoam ball for a head complete with wiggle eyes and a beak. We made the chick Â“fresh hatchedÂ” by placing him in a plaster-of-paris egg! We made a sign that said Â“IÂ’m peepers for the Dixie Classic Fair.Â”

Grace decided to make a pig. She glued hot pink glitter to a red apple, glued on a hot pink Styrofoam head and added hooves, a tail, a snout, eyes, and ears. WeÂ’ve been reading CharlotteÂ’s web, so Grace added a fake spider and spider web that said Â“Some PigÂ”. She also wrote a sign that said Â“HamminÂ’ it up for the Dixie Classic Fair.Â” Grace won third place in her age category (out of about 75) and cousin Jacob won 1st place in his age group for his decorated rooster. We told Laura that she won the baby contest, which satisfied her!

We have a reason for praise. A couple of weeks ago Grace passed another milestone Â– 3 years since her cancer diagnosis. SheÂ’s lived the majority of her life as a Â“cancer survivor.Â” Looking back on those first terrifying days, we all seem like different people. And it seems like a very long time ago. Thank God that so much of what happened during GraceÂ’s treatment seems like a bad dream to us and more importantly to Grace. While much of who Grace has become is based on fighting and overcoming Neuroblastoma, many of the details have been lost in the fog of memory. We are so glad that other people see just another normal little girl (although beautiful, charming, witty, and bright) who looks like Â“sheÂ’s never been sick a day in her life.Â”

We have several prayer requests. Please keep Morgan Barnes in your prayers. SheÂ’s in NYC doing 3F8 antibody treatment and sheÂ’s had a bad break to her leg. SheÂ’s had surgery to repair the damage, but now she has to complete the antibody treatment while sheÂ’s trying to recover from the break. Also, keep the CourtneyÂ’s in your prayers. Jake is feeling okay, but his latest test results indicate that the NB continues to spread.

We am joining with other Neuroblastoma parents in an effort to help all the kids who are fighting this horrible disease. Neuroblastoma accounts for about 7 percent of all cases of cancer diagnosed in children. But, it accounts for 15 percent of all deaths from pediatric cancers. There is so much research that needs to be done to improve the outcomes of children diagnosed with this terrible cancer.

We are asking each of you to do something very simple, but it could have a huge impact. It is called Lunch for Life. The concept is that each of you donate $5.00 (about the cost of a lunch) to Neuroblastoma research. Then, ask five of your friends to do the same and to ask five of their friends. It is kind of like a chain letter, but with a very good outcome.

You can designate your donation to the Children's Neuroblastoma Cancer Foundation in honor of Grace in the following ways:

* online (it is a secure site) at www.cncf-childcancer.org/donation.asp
* by phone -- the number is 1-866-671-2623
* by mail -- the address is
CNCF
PO Box 6635
Bloomingdale, IL 60108

Thanks for checking inÂ…

Tuesday, August 19, 2003 4:18 PM EDT

Hi folks –

We’ll I guess our summer has pretty much come to an end. We were able to squeeze in one more quick trip before school started. We went to Chimney Rock and Lake Lure for the weekend a few weeks ago. We had a great time boating on Lake Lure, splashing in the Broad River, and hiking at Chimney Rock and Hickory Nut Falls. Mom says NO MORE HIKING for at least a couple of weeks!

The big news is that Grace started Kindergarten on the 6th. Things couldn’t be going any smoother! Grace loves her teacher (Mrs. Tew) and her teacher’s assistant (Mrs. Macey). Mrs. Macey immediately reminded us of one of Grace’s favorite nurses, Tracy. She has the same super sweet nature that Grace always loved in Tracy. We didn’t mention the resemblance to Grace, but she picked up on it herself after a few days. Grace has acclimated to the new schedule with very few glitches. She comes home with a new story every day. Her best friend, Molly, is in her classroom. Molly didn’t start until yesterday because she was in China adopting her new sister Erin! I’m sure Grace told Molly just how to do at Kindergarten!!!

Grace was beside herself with excitement today because she was the second kid in her class to fill up her card with “happy dots” for good behavior. She got to visit the prize box, but the praise and sense of accomplishment were far more important to her. She’s one of those kids with a drive to please…we’re still working on internalizing that with Laura!

Grace has been very excited that Mom came to school with her this week. She’s going to be substituting at Shady Grove (Grace’s school) this year and she’s working Monday, Tuesday, and Wednesday this week in the Autistic class. It’s been good for Grace and I think it has reminded Mom how much she loves to teach and to work with handicapped children. Laura has been staying with Mawmaw and Pawpaw. She’s had a great time and loves to ride there and home in “Daddy’s fast white car.” No one else would be so excited to ride in a ten-year-old Nissan.

Laura is going to start preschool next week. Miss Nancy sent her a note welcoming her to Macedonia’s preschool and inviting her to open house. Laura was very excited. We found out that a couple of her buddies from Sunday school will be in Miss Nancy’s class too, so that should help ease the transition. Mom is going to have 6 “kid free” hours a week. What will she do with all the free time?

Grace and Laura have a couple of new things on the horizon. Grace starts horseback riding lessons next week. She’ll go one afternoon a week. Grace and Laura are both going to play soccer in the fall. Grace moves up to the independent class/team for 5 and 6 year-olds. She’ll have one practice during the week and games on Saturdays. Laura starts the kid and parent classes for 3 and 4 year olds on Saturdays.

One funny story…Laura is an average sized 3 year-old overall (she seems so small compared to Grace), but she is practically non-existent below her waist. All her height is from her waist up. She still wears a lot of 24 month and even a couple of 18-month shorts. Dad went to the sporting goods store and found the teeny-tiniest pair of soccer shorts you’ve ever seen. Laura may not be the best soccer player ever, but she’s going to be the cutest one!

Please continue to remember all the kids that are still battling cancer and related diseases.

Thanks for checking in.

PS I added a new photo. We often attend a summer concert series on Thursday nights at Stratford Place. Grace and Laura spotted this bike wanted a closer look. The owner let them take a “ride.”

Monday, July 21, 2003 4:24 PM EDT

Hi everyone –

We’re having a great summer! Grace and Laura are making the most of the warm weather. They both love to spend as much time at the pool as possible. Grace has learned to swim independently. She’s also jumping off the side, diving off of the diving board, turning flips, and doing underwater handstands! Laura is happy as a clam swimming around in her hippo float. She’s recently started jumping in off the side without her float and letting her head go under water for a few seconds. Grace has taken a horseback riding lesson and she loved it. We’ve got to buy her some equipment now and she’ll be able to start taking weekly lessons. We’ve been so slack about getting things started we may just set them up for an after-school time.

We’ve had several celebrations at our house. In June, Grace celebrated her 2-year post bone marrow transplant anniversary. She didn’t seem all that excited, but it was great for Mom and Dad. Most importantly, it marks the time that Neuroblastoma relapse becomes much less likely!!! Also, Grace is now able to start receiving live vaccines. This is great because we won’t have to be so vigilant about isolating Grace from the chicken pox once all her vaccinations are complete. Grace and Laura also celebrated their birthdays. Grace turned 5 on July 1 and Laura turned 3 on July 3. We had a family party before their birthdays, celebrated Grace’s on the 1st, gave them their “together” gifts on the 2nd, celebrated Laura’s on the 3rd, and hosted a kid party on the 5th. I don’t think we could have done much more. We had planned a camping theme party for the kids, but it got rained out and we had the party inside instead. It really didn’t matter; when you get 9 kids together they find something fun to do!

We went to the mountains for a day trip yesterday. We went to Grandfather Mountain for a picnic, to see the animals, and to walk across the swinging bridge (Mom’s least favorite part). We also went to Linville Falls. We hiked to several locations to view the upper and lower falls. Grace was our cheerleader encouraging us all the way. We had to marvel at Grace’s strong legs running up and down the mountain, climbing up and jumping off of every rock rather than going around them. We hiked for nearly 2 miles over some pretty tough terrain up the side of a mountain. After a little rest Grace was ready for more (although Mom, Dad, and Laura were not). While we would occasionally cringe as she ran a little too fast, or jump down from a little too high, we were astounded that she could do it. Was it only 2 years ago that Grace was too weak to bend over and pick up a toy off of the floor? We thank God that she’s come so far. On the way home we stopped at the Daniel Boone Inn and ate until we could hold no more…..

We only have two more weeks before school starts, but we still have a few more things to mark off of our summer to-do list. We’ve had our tent, air mattress, and sleeping bags in the dining room for over two weeks planning a campout in our back yard. Every time we get the tent set up we get an unexpected thunderstorm and have to quickly bring everything back inside.

Please continue to keep our friends in your prayers –

Andrew – pray that his latest test results won’t keep him from returning home to Alabama on Sunday
Jake – pray that he will quickly recover from a tough round of antibodies
Miranda – she’s recently relapsed. Please pray that further treatment will quickly return her to remission
Morgan – pray that she will continue to do well with her antibody treatment
Sarah – that she will feel stronger soon and that her parents will get a clear picture of where to go from here
Grace – praise God that she continues to do so well.

Thanks for checking in……

Friday, June 13, 2003 11:05 AM CDT

Hi everyone –

I guess we are way past due for an update. First, let me thank everyone who was so supportive when Susan had her miscarriage. It was so encouraging to receive all the calls, cards, and meals. Susan is feeling much better, although we had a few rough weeks.

We’ve been doing lots of fun stuff this summer. I guess we’ve been trying to put the loss behind us and we also want to make the most of this summer since Grace will be going to Kindergarten in the fall (actually August 6!!!). While we are on the subject of school, I’ll mention what’s happening on that front. Many of you know that Grace is hearing impaired as a side effect of her treatment protocol. She was identified as HI by the school system and has been receiving speech and HI therapy through the school system at her preschool this year. It has gone great. We’ve been so happy with the folks that are working with her. We’ve had a preschool transition meeting (a meeting that’s held when a student transitions from one school setting to another) and an IEP meeting (an annual update of Grace’s Individualized Education Plan). We learned so much at each. We were able to tour all of the Kindergarten classrooms at Shady Grove Elementary. We were so impressed with the students and the faculty. We have also learned that there will be another hearing-impaired student entering Kindergarten at Shady Grove next year. He has a cochlear implant and might be more severely affected than Grace. All the staff and faculty at Shady Grove are going to receive in-service training this summer from an expert on teaching hearing-impaired children. We are so excited that the folks at the school are being so proactive and supportive.

It’s going to be hard for us to let go of Grace for her to attend school, but she is looking forward to it. I’m not sure if we would be able to do it if it were not for Larry Lanier. Larry and his wife Patsy attend Macedonia and have been very supportive throughout Grace’s treatment and recovery. Larry is the principal at Shady Grove and we know that Grace couldn’t be in better hands. Thanks, Larry.

We’ve been able to do so much already this summer. We went down to Atlanta a couple of weeks ago to visit Six Flags over Georgia. It was our very last “freebie” from Grace’s Give Kids the World Village Passport. We had a great time. Laura loved the carousal and rode it eight times! The bigger the better was Grace’s philosophy. She was just tall enough to ride on some of the larger roller coasters. She and Dad even rode on one with multiple loops! We got the photos back yesterday and they were great.

We went to Caswell Beach for all of last week. The weather was wonderful and the girls couldn’t get enough of the beach and the pool. Grace has really made a lot of progress with swimming. She’s swimming short distances independently both above and under the water. Both Grace and Laura expect to spend 4 hours or more at the pool every day!

Grace has asked to take horseback riding lessons and we’re still working that out. We hope she’ll get in several sessions this summer and we may continue into the school year if she likes it.

During all the fun things were doing this summer, we can’t help but thing of all the kids that aren’t able to normal kid stuff because they’re still in treatment. Please continue to pray for Sara, Morgan, Jake, Andrew, and all the others.

Take care.

Wednesday, April 23, 2003 2:32 PM CDT

Hi everyone –

We’ve had some disappointing news. Susan went to the doctor on Monday because she was having problems with her pregnancy. They did an ultrasound and determined that the baby had died. Susan had a tough 24 hours and we ended up at the hospital because her blood pressure was quite low causing her to pass out a number of times. They hydrated her and she was in much better shape last night.

Please pray that Susan will continue to recover quickly and completely. Also pray for Grace and Laura. It is very hard for them to understand what happened with the “new baby.” It is hard for us to understand that too. Laura has talked a lot about the baby and has asked a lot of questions.

Thanks for checking in.

Tuesday, April 8, 2003 2:40 PM EDT

Hi everyone –

Thanks for continuing to check on Grace and the rest of us. We’ve been well. Grace has started on some new medications to help clear her head congestion. They are working well. She seems to be hearing a bit better now that the head congestion isn’t further dampening her hearing. Grace will repeat a test on Wednesday called a tympanogram to determine if her eardrum is now moving freely. We’re expecting a good result.

We finally got the green light that Grace’s immune system was functioning well enough to repeat all her immunizations. She’ll get 5 shots on Wednesday and will continue to get several shots about every 8 weeks through autumn. That will be fun…. We are actually looking forward to getting it behind us. Grace just missed two weeks of preschool because she still has to avoid kids who have been exposed to the chicken pox.

We registered Grace for Kindergarten at Shady Grove a few weeks ago. Mom also took her for her Kindergarten assessment. The teachers and administrators assured us that Grace is more that ready to go, but it is going to be so hard for us to let go after everything she went through. Grace continues to amaze us. Others may see things differently, but when we look at Grace we just see a normal little girl. By looking at her, you would never guess she’s had a sick day in her life. That was always our prayer and our hope when she was going through treatment.

Now for the big news…….Grace and Laura are going to have a little brother or sister! They are over the top excited. We told them on Thursday night and their reactions were priceless. We told them that we had a big surprise and Laura decided that we were getting a horse. Where this came from we have no idea, but for a few minutes she was disappointed with the idea of a baby vs. a horse. Grace’s eyes got as big as saucers and she couldn’t wait to tell the world. Laura very quickly picked up on Grace’s excitement. They immediately started scheming where the new baby was going to sit at the table, where the baby will sleep, where the baby’s car seat belonged, and etcetera. Both of the girls love to tell folks that their mommy has a baby in her tummy. We just hope that their excitement continues through diapers, sleepless nights, and less attention.

A few days ago, Laura told Mom that she didn’t feel well. She said that her stomach hurt that she felt sick. Mom was concerned until Laura told her that the new baby was making her sick. I’ve heard of the dad getting sympathy pains, but this is the first I’ve heard of that happening to the sister.

The baby is due on November 5, so we have a long way to go. Please pray that Susan and the baby will have a very healthy pregnancy and delivery. Susan has always battled pretty severe nausea throughout pregnancy and this one is starting out no differently. Otherwise everything looks great. We were able to see the baby’s heartbeat on the ultrasound last week, which brought tears to our eyes. A couple of people have asked us if we were concerned about another child having Neuroblastoma. Thankfully, this is very unlikely. Siblings of children diagnosed with Neuroblastoma do have a slightly increased risk of the disease, but it is very rare. Grace’s oncologist once described it like this: if you double the chances of getting a rare disease, the chances of getting it are still very low. This baby (like any other) is much more likely to have Down Syndrome, a neural tube defect, or even Leukemia than Neuroblastoma. Of course, it is our prayer that our baby will be perfectly healthy.

We have prayer requests – as always –
1. Andrew – he returned to Duke from Alabama several weeks ago due to post transplant difficulties. He is suffering with a viral infection that his body is struggling to rid. Andrew’s family is asking for financial support. Their website (www.caringbridge.org/page/andrewshope) offers several ways to give, including one that’s tax deductible.
2. Jake – he’s returned to MSK in NYC for further testing.
3. Morgan – she’s been released from Duke but will be traveling back to MSK next week to start antibody treatments.
4. Susan/baby – that everyone will be healthy and strong in the upcoming months.

Thanks for checking in.

Monday, March 3, 2003 4:16 PM CST

Hi everyone –

It seems that we wait a little longer between each update. I think that’s just an indication that everyone is doing well and there’s little to report. We’ve been battling the ice and snow just like everyone else. Fortunately, we haven’t lost our power for any length of time. Here are the highlights since our last update:

- We visited the Vance’s mountain cabin in Blowing Rock (thanks again Dr. and Mrs. Vance). We had a great time as usual. Blowing Rock hosted a winter festival and we were able to see dog sledding and ice sculpture making. We also went to Ski Hawksnest for snowtubing!!! The girls LOVED it.
- Despite getting the flu shot, Grace, Laura, and Mom all got the flu. The doctor confirmed that it was the flu and suggested that it may be milder since they had the flu shot. I would hate to see the harsher version!
- Mom had a conference with Grace’s new hearing-impaired teacher. She’s very nice and seems to enjoy teaching Grace. She feels that Grace is functioning very well considering the amount of hearing loss she’s experienced.
- Grace went to a birthday tea party for one of the girls in her class. It was very fancy and she loved it! Laura was disappointed that she couldn’t go, so she and Dad had a tea party at home. Laura dressed up as a princess (in a hand-me-down tutu) and Dad was a fireman (in a kid’s fire safety hat).
- We traveled to Virginia Beach last weekend on a whale watching expedition. While we didn’t see any migrating whales on our boat trip, we still had a very nice time. The girls enjoyed flying kites and feeding seagulls on the beach more than anything. We can’t wait for our summer beach trip in a few months!

Mom took Grace to Chapel Hill today for an audiogram. Grace is having problems with one of the FM receivers, so they left it to be repaired. The audiologist found some middle ear blockage during a routine test. We now need to take Grace to an ENT this week to have them do further evaluation. She may need to have a tube placed in her ear. YUCK. We’ll just have to wait and see.

We’ll be attending the open house/registration at Shady Grove Elementary tomorrow night. It’s so hard to believe that Grace will be attending Kindergarten next year. We often wonder if she’ll really be ready, but at the same time, she’s learning so much and maturing before our eyes.

We have a number of prayer requests as always.
1. Miranda – her parents are taking to the folks at Duke about a second transplant.
2. Morgan – she’s at transplant now and is doing great. Pray that she’ll engraft in the next few days.
3. Jake – he’s completed another rough round of chemo. He’s neutropenic now and I’m sure he feels lousy.
4. Andrew – he’s on a train from Alabama with his mom and brother headed for Duke. They should arrive tomorrow. He has ongoing issues remaining from his BMT that was nearly two years ago. Please pray that the folks at Duke will be able to resolve his issues. This could be a long visit to Durham. His website is www.caringbridge.org/page/andrewshope

Thanks for the continued support and prayers!

Monday, March 3, 2003 4:16 PM CST

Hi everyone –

It seems that we wait a little longer between each update. I think that’s just an indication that everyone is doing well and there’s little to report. We’ve been battling the ice and snow just like everyone else. Fortunately, we haven’t lost our power for any length of time. Here are the highlights since our last update:

- We visited the Vance’s mountain cabin in Blowing Rock (thanks again Dr. and Mrs. Vance). We had a great time as usual. Blowing Rock hosted a winter festival and we were able to see dog sledding and ice sculpture making. We also went to Ski Hawksnest for snowtubing!!! The girls LOVED it.
- Despite getting the flu shot, Grace, Laura, and Mom all got the flu. The doctor confirmed that it was the flu and suggested that it may be milder since they had the flu shot. I would hate to see the harsher version!
- Mom had a conference with Grace’s new hearing-impaired teacher. She’s very nice and seems to enjoy teaching Grace. She feels that Grace is functioning very well considering the amount of hearing loss she’s experienced.
- Grace went to a birthday tea party for one of the girls in her class. It was very fancy and she loved it! Laura was disappointed that she couldn’t go, so she and Dad had a tea party at home. Laura dressed up as a princess (in a hand-me-down tutu) and Dad was a fireman (in a kid’s fire safety hat).
- We traveled to Virginia Beach last weekend on a whale watching expedition. While we didn’t see any migrating whales on our boat trip, we still had a very nice time. The girls enjoyed flying kites and feeding seagulls on the beach more than anything. We can’t wait for our summer beach trip in a few months!

Mom is taking Grace to Chapel Hill today for an audiogram. Grace is also having problems with one of the FM receivers, so they left it to be repaired. The audiologist found some middle ear blockage during a routine test. We now need to take Grace to an ENT this week to have them do further evaluation. She may need to have a tube placed in her ear. YUCK. We’ll just have to wait and see.

We’ll be attending the open house/registration at Shady Grove Elementary tomorrow night. It’s so hard to believe that Grace will be attending Kindergarten next year. We often wonder if she’ll really be ready, but at the same time, she’s learning so much and maturing before our eyes.

We have a number of prayer requests as always.
1. Miranda – her parents are taking to the folks at Duke about a second transplant.
2. Morgan – she’s at transplant now and is doing great. Pray that she’ll engraft in the next few days.
3. Jake – he’s completed another rough round of chemo. He’s neutropenic now and I’m sure he feels lousy.
4. Andrew – he’s on a train from Alabama with his mom and brother headed for Duke. They should arrive tomorrow. He has ongoing issues remaining from his BMT that was nearly two years ago. Please pray that the folks at Duke will be able to resolve his issues. This could be a long visit to Durham. His website is www.caringbridge.org/page/andrewshope

Thanks for the continued support and prayers!

Wednesday, January 22, 2003 at 01:08 PM (CST)

Has it really been a month since we last updated? Things have been good at our house. We all had a great Christmas and New Year. The girls got lots of Barbie and Polly Pocket stuff, which they love! They are both very into any kind of girlie toy. Grace continues to enjoy pre-school and Laura shows signs that she may be ready for two-days-a-week next year as well.

Grace has started repeating her immunizations. We had blood drawn for a titer six weeks after the first round of shots to see how well her immune system responded. The results are “indeterminate” so she had to get another shot today. We’ll repeat the titer in six more weeks to see how well she responded this time. If it’s positive, we can proceed with all her immunizations. If it’s negative or indeterminate, we’ll have to wait a few months a try again.

Grace really hates going to the doctor now, especially for shots and blood draws. As a reward for the shot today, she and Laura got to go the mall and make a “Build-a-bear.” We had planned to take them anyway. Build-a-bear has introduced a childhood cancer awareness bear named Nikki’s bear. It’s named after Nikki Giampolo a 14-year-old who lost her battle with cancer. Each bear comes with a gold children’s cancer awareness pin and $1 is given in support of the Children’s Cancer Society. If you live near a Build-a-bear it’s a great way to have fun and support awareness of childhood cancer.

Grace is doing very well with her hearing issues. She wears her hearing aids to pre-school, Sunday school and other settings with lots of background noise. Her pre-school teacher and Sunday school teachers have been great to wear their mikes used with the associated FM system. Grace receives speech therapy through the school system and that’s going great. She’s nearly met all her goals for this year. The school system has also hired a new hearing impaired teacher (I’ve always thought that terminology makes it sound like the teacher is hearing impaired) and we look forward to meeting her and hearing any new ideas she may have. She’ll work with Grace in a supportive role in pre-school and once she enters public school.

Mom is staring another class next week, so Dad will be in charge one night a week for the next few months. I guess we’ll be back to spaghetti once every week now (Dad can manage that).

I’ve got lots of prayer requests this time.
1. Andrew, Jackie, Ben, Max, Molly, Sam, Taeler and Austin C. – that they would continue to grow and strengthen daily.
2. Austin P – that he will continue to wean his drugs so he will be able to be with others more often
3. Evan – that he’s healed completely from his surgery and that he’s in no pain now
4. Jake – that he would have a good trip to NYC and that his test results would be good
5. Tim and Melissa – that God would encourage them daily as they continue to grieve losing Jon
6. Miranda – that her upcoming test results would be good
7. Mitchell – that he and his family can enjoy entering a new phase of their lives – the END OF TREATMENT
8. Morgan – that she would be healthy and disease-free going into transplant
9. Grace and Laura – that they’ll continue to thrive.
10. Mom and Dad – that we’ll make good decisions about Grace’s hearing and school issues.

Thanks for checking in. We posted a new photo.

Friday, December 20, 2002 at 10:54 AM (CST)

Merry Christmas everyone!

Grace celebrated the 2-year anniversary of her tumor section on the 8th. Praise the Lord that Grace remembers all the “medical stuff” as things we used to do. It seems more and more like a bad dream that you can put behind you in the light of the morning.

We have been taking advantage of every live nativity, Christmas concert, candle tea, and birthday party for Jesus that we can find. If the girls have no other Biblical knowledge they should know the Christmas story. It has been presented in every conceivable form!

Grace was an angel in the live nativity at our church this year. When we brought Grace to the fellowship hall to get dressed in her costume, the director asked Laura if she’d like to be an angel too! She of course said, “YES.” We were a little unsure, but both Grace and Laura jumped on the idea. The littlest angel did pretty well with the help of Grace and her friend Abby. We told Grace she had to look after Laura and make sure she did the right things…this was great for Grace, as she loves to play the little mama.

Grace participated in her preschool’s Christmas program. We didn’t really think it was going to be a big deal, but it was great! Grace stood right beside her “best friend” Molly and alternated singing and yawning. All the kids did a great job. I must say I’ve never seen so many camcorders in one room. The balcony looked like it was set up for a presidential press conference!

I have a couple of funny Christmas stories. Grace went with Mom to order our photo Christmas cards. (It only took a whole roll to get a couple of presentable shots of Grace, Laura, AND Sassy.) Mom had picked out a card that said “Merry Christmas” and was decorated with holly. Grace looked at the options and told Mom, “Christmas is not about leaves and berries…its about Baby Jesus…” I guess Grace decided she needed to evangelize in Sam’s! Well, needless to say Mom made a choice with a nativity scene. Maybe Mom can get the holly berries next year.

Grace and Laura are really into Santa Claus this year. They are constantly reminding each other that they must be good if Santa is going to bring them gifts. Grace takes great delight in telling Laura that Santa is taking her Barbie with the stroller out of his sack if she’s misbehaving. We were at a community Christmas concert last night that collects food for the Salvation Army. We were leaving a few minutes early and we caught a glimpse of Santa coming on stage as we left. Laura said, “I wasn’t being too much of a maniac when Santa saw me.” I guess she was right.

Thanks for checking in on us. It is our prayer that you will have a healthy and peaceful year ahead.

Wednesday, November 20, 2002

Hi everyone –

I guess we are past due for an update. Things have been going well around the Cain house. Grace continues to thrive at preschool. She LOVES her teacher, Ms. Tonya. She seems more and more a like a “big girl” every day. Laura is learning to enjoy Sunday school. She’s never been an advocate for spending time away from Mom, but she’s finally coming around. We have been so blessed to be members at Macedonia Moravian Church. Macedonia has so many folks committed to excellence in children’s and youth ministry. A big thumbs up to Grace and Laura’s Sunday school teachers.

Mom attended a conference in Greensboro last Wednesday through Friday. Grace and Laura had a “drop off” at Mawmaw and Pawpaw’s on Wednesday and Friday. Nana kept them at our house on Thursday and took Grace to preschool. We were worried that it would be tough on the girls having to get up earlier in the mornings and spend the day away from home without Mom or Dad. As usual, we were wrong. They loved all the extra attention they got from their grandparents. Grace and Laura are both ready for another “drop off” ASAP.

Dad took Grace and Laura shopping on Saturday for Mom’s Christmas presents. They were so good at the mall. Dad had some general ideas of what Grace and Laura could buy for their Mom. On the way to the mall he discovered that they had very different ideas. They knew exactly what they wanted and nothing else would do. Fortunately, these relatively obscure items were pretty easy to come by. Grace bought her gift for Mom at Toys-R-Us…..we’ll explain after Christmas…..

Mom took Grace and Laura to the doctor today. Laura was due for the second half of her flu shot (small kids require two shots if they’ve never had it before). Grace is actually a little past due for an exam and basic blood work. We’ve started to transition Grace to her pediatrician, Dr. Trowell, at Winston Salem Healthcare. The docs at Brenner feel that it’s time to start seeing the “regular” docs for basic things like ear infections and immunizations. We feel that this is another small step towards becoming a “normal” kid. We have a lot of respect for Dr. Trowell so we have no concerns about returning Grace to her care. Grace lost all of her immunizations during her bone marrow transplant. Today she starts the process of being re-immunized with two shots. She’ll need quite a few more shots over the next few months to replace all the ones she’s lost. The good news is that Grace got a Grade A report from Dr. Trowell. Everything looked good with her exam (except she has no involuntary reflexes now…..I guess she can’t serve in the military) and her blood work was fine. She had a couple of lab values that were slightly outside of the normal range, but that’s to be expected. The bad news is that both Grace and Laura threw huge fits today at the doctor’s office. Going to the doctor really unnerves Grace now that she’s “out of practice.”

Prayer requests –
1. Keep the Powell’s in your prayers as they adjust to life without Jon.
2. Jake has returned home from Sloan Kettering after successfully completing another major surgery. Pray that he will continue to heal, grow, and strengthen. Also, pray for the doctors’ wisdom as they continue to care for Jake.
3. Morgan is doing well and will be having surgery on Friday to remove some lymph nodes. Pray that the surgery would be a complete success and that the following test results would be encouraging.
4. Praise God that Grace continues to grow and thrive. We so much to be thankful for.

Thanks for checking in.

PS We have new pictures…..

Tuesday, October 22, 2002 at 02:19 PM (EDT)

Hi folks –

We have some sad news to report about our friends the Powell’s. Jon died on Saturday at Duke University Medical Center. Jon had relapsed with Neuroblastoma to his spinal cord. We’re told that Jon passed quickly and peacefully in his mother’s arms. We will be traveling to Princeton, WV tomorrow for Jon’s memorial and burial.

Please join us in lifting up Tim, Melissa, and the entire family in prayer. Jon was a beautiful boy and we will all miss him greatly. We are thankful that his life was full and that he is now free of pain. We’ll always be grateful to Jon for guiding Grace through her treatment.

Please keep Grace in your prayers as well. We’ve never told her that any of her friends have died. We’ve always just let Grace slowly forget those kids that’s she met during treatment that passed away. That just wouldn’t work with Jon. She felt so close to him and prayed for him nearly every night. We explained to her as best we could that Jon is in heaven with Jesus. Grace wants to have her own memorial service for Jon with our family since she won’t be attending the one in Princeton. She says she wants to “sing some happy songs to Jon and pray for him.” We plan to do just that.

We have a link to Jon’s website if you would like to access it.

Thanks for checking in.

Tuesday, October 01, 2002 at 11:56 AM (EDT)

Hello –

We’ve passed another milestone very quietly and with no fanfare (thank goodness). Grace was admitted for her first hospitalization on September 29, 2000 and was officially diagnosed with Neuroblastoma on October 3, 2000. In many ways, it seems like more than two years have passed. I guess a lot has happened. We are so thankful to be on the “other side” of treatment and that Grace is doing so well. Thanks to each of you for your continued support and prayers.

Grace is really enjoying preschool. She’s made a lot of friends and seems to be behaving herself. We really want her to “fit-in” with the other kids and we’ve been told that she does. We’re very fortunate to have a great program and teacher for Grace. The school speech therapist has started visiting her at preschool to make sure that her speech is developing normally and that her hearing aids and FM system are used to their maximum potential. The Davie County schools lost their hearing impaired teacher this year and they are searching for another. We would appreciate prayers that the right person would be hired by the school system.

Mom took Grace to Chapel Hill for her audiology check up last week. Everything looked fine. They didn’t need to make any adjustments to her hearing aids or program. Grace does have allergies and has some level of head congestion all the time. That causes another slight reduction in her hearing abilities. If this has not improved by spring we’ll get a referral to an ENT. They may want to start some medication at that time to reduce her head congestion. No biggie….

Grace and Mom were able to see Lindley (aka Barbie Nurse from Brenner). She’s moved to Chapel Hill to pursue her master’s in nursing and is working part time with the pediatric Hem/Onc group in Chapel Hill. Grace was excited to see her. It was nice to have something positive to “sell” Grace on. Now that Grace doesn’t have many medical visits, she gets pretty stressed out about them. She really wasn’t herself on Friday.

We took the girls to Paramount’s Carowinds on Saturday complements of Give Kids the World in Florida. Both Grace and Laura had a great time. They wanted to ride everything that they were big enough for. Laura was obsessed with getting to ride in the blue car/balloon/airplane/helicopter. Blue is her favorite color. We had to make up elaborate stories of why the white helicopter or red car was really okay to ride. She can still remember the color of everything she rode. The girls also got to meet Dora of the Dora the Explorer TV show. They love Dora and were thrilled to meet her. We’ve also been invited to go back to Carowinds this Sunday for the Make-a-Wish day. Based on their reaction, I think were going back. Yesterday, Laura told Mom, “I will love you forever Mama…….will you take me back to Carowinds?”

Grace and her cousin Jacob are entering a decorated apple in the Dixie Classic Fair this year. You can take one look at Grace’s entry and see that there was very little parental assistance provided! She had a lot of fun decorating her apple and she’s expecting first place! Mom and the girls are delivering them on Wednesday. Laura made an apple too, but she’s too little to enter the contest.

Please continue to keep Jake, Morgan, and Evan in your prayers. Jake is recovering from chemotherapy. It has been a very slow recovery this time, so please keep those prayers coming. Morgan is doing well with her chemotherapy. She has scans coming up to access how well the chemotherapy is doing to destroy all the NB cells. Please pray that she’s already NED. Morgan has a Caringbridge site. The address is www.caringbridge.com/nc/morganbarnes. Also, please remember Evan and his family. He has a genetic disorder and had a bone marrow transplant at the same time as Grace. Evan’s disease has continued to progress in spite of his transplant. He now requires round-the-clock nursing care. His family is struggling to accept the reality of his disease.

Thanks for checking in.

Tuesday, September 03, 2002 at 04:05 PM (CDT)

Hi everyone –

We’ve been great. Grace has started pre-school and loves it. She’s already telling us how Miss Tonya does everything. I guess it is payback time. Susan’s student’s parents used to tell her how they constantly heard how Mrs. Cain did things! Grace is doing well and seems to hear everything just fine in the classroom using her FM system. She has an appointment at Chapel Hill later in the month to check her progress with her hearing aids.

We went to the beach for the holiday weekend and had a great time. Mawmaw and Pawpaw went with us. Grace and Laura loved the extra attention. I hope they didn’t wear Mawmaw and Pawpaw out too badly! We enjoyed time on the beach and a trip to the Ripley Aquarium. We also visited the Pavilion theme park - we had free tickets that we were given while on our MAW trip to Disney. The girls love rides and have talked us into a trip to Carowinds (theme park in Charlotte) before the season ends.

We wanted to give an update on all the kids we’ve asked you to pray for. Jake had a very difficult but successful surgery at Sloan Kettering in NYC. He’s back home and is supposed to start chemotherapy today. Jon completed his radiation and lots of testing. Thank God he’s been declared NED (no evidence of disease). Tim and Melissa will be discussing additional treatment with Dr. Driscoll tomorrow. Morgan has started her chemotherapy and is tolerating it well. She preparing for pheresis at Duke in the next few weeks. Please continue to keep these kids and their families in your prayers.

Thanks for checking in….

Tuesday, August 06, 2002 at 04:33 PM (EDT)

Hi everyone –

Has it been three weeks since we updated??? I guess time flies when you’re having fun. Things have been great for us this summer. The girls have been spending A LOT of time at the pool. Grace can swim (doggie paddle) alone using “water wings.” She would still sink pretty quickly without a little help from her “water wings.” Laura has branched out to kicking around by herself for a minute or so while holding a “noodle.” They both insist on swimming in the “big pool” with the exception of the hourly pool breaks, which require them to return to the “baby pool.” Have you ever noticed how loudly the lifeguards blow the whistle for the pool break and how softly they blow it for everyone to return to the pool following pool break?

It’s been a while since our last update, so I’ll give you a lowdown on recent events. Please forgive my “stream of consciousness” approach.

- Mom took Grace and Laura to see the “Country Bears Movie”.
- Mom took Grace and Laura to see “Stewart Little II” with Aunt Rene, Ben, and Hannah.
- Mom took Grace, Laura, Ben, and Hannah to Spencer, NC with their playgroup to the Railroad Museum.
- Mom took Grace and Laura to Sciworks.
- Mom took Grace and Laura to the dentist – they both got A’s from the dentist. Grace showed off to Laura by going back with the hygienist while Mom and Laura waited to be called back
- Mom and Dad went out to dinner ALONE for our tenth anniversary.
- We all went to an outdoor concert at the courtyard behind Lucky 32.
- Mom took Grace and Laura to pick blueberries with Mawmaw and Pawpaw – we’ve had blueberry pancakes, blueberry muffins, blueberry cream cheese pie, plain blueberries, etc. – a gallon goes a long way.
- We planted a container vegetable garden earlier this summer. Grace has to “harvest” nearly every day. She and Laura are going to help us pull up the beans, cucumbers, squash and zucchini to plant salad greens (Dad says YUCK).
- We all went to Jennifer Garnett’s wedding and reception (Laura the reception only). Everything was beautiful. The girls are really into “girly” stuff and they were dying to go to the wedding. They both thought that Jennifer looked like Cinderella at the royal ball – a huge complement.
- Dad’s Uncle Johnny and Aunt Fran from Florida were in town and we all got to visit at Mawmaw and Pawpaw’s house.
- Sassy surrendered his manhood, had three baby teeth pulled and had a microchip injected (in case he’s lost), all with no ill effects.
- Grace is a big-time friend with our across-the-street-neighbor, Emily. Emily is Grace’s age and has two older brothers. She trying to get Grace interested in boy stuff like Batman….I think it is going to be an uphill battle for Emily.

As you can tell it has been a busy summer so far.

We have a few prayer requests. First for Jake. He’s in NYC preparing to have surgery and intraoperative radiation on Thursday. The surgery will be quite involved and take a long time. Secondly, remember Jon. The Powell’s are living in Durham while Jon completes his cranial radiation. He’ll start chemotherapy after a break of a few weeks. Lastly, please pray for 3-year-old Morgan. Dr. Tom McLean at Brenner called us last week and asked that we contact Morgan’s family. Morgan has just been diagnosed with Stage IV Neuroblastoma. She’s had a successful surgery to resect her tumor and is starting chemotherapy this week. Please pray that we will be able to help this family navigate through this tough time.

Thanks for checking in…..

Monday, July 15, 2002 at 04:22 PM (EDT)

Hi everyone –

Things have been great with us. We’ve been enjoying this summer to the fullest. Grace and Laura got a tent to share for their birthdays. We “camped out” in the back yard on Friday night. Mom, Laura, and Sassy gave up about 12:30 am, but Grace and Dad made it until morning!!! Fortunately we picked a nice cool night.

Grace went to Brenner today for her one-year follow up. Can you believe that it was her first visit since April? Everything looked great. It was the first time in over two years that all the major components of her CBC (white blood count, hemoglobin, and platelets) have been normal without transfusions. It was Grace’s first clinic appointment in the new Brenner’s wing. It was really, really nice – a tremendous improvement over the old clinic.

I have to tell a few funny stories about my girls. It seems that Laura entered the “terrible two’s” immediately following her birthday. She has quite a mind of her own. Her favorite phrases are – “No Daddy/Mama No!!!”, “Everybody’s not making me-me happy”, “Me-me not like this”, and “this is NOT my favorite”. Somehow Laura can even make these phrases seem cute. She’s one of those kids who’s so hard to discipline because she’s so adorable (not hateful) saying all these things. I guess you just have to be there. This girl knows what she wants. If she decides to marry someday, we’ll have to say some extra prayers for her husband.

Grace has decided that she’s the expert at everything. She and Laura took swimming lessons the week of July 4th. Grace’s instructor only had one other student. He was a year younger than Grace and was a little less confident the in water. She was sure to show him repeatedly how to do each skill. She was actually really sweet about it and I think she made him feel more comfortable. She’s also decided that climbing is her new favorite activity. She and Laura got a playhouse complete with kitchen accessories from Mawmaw and Pawpaw for their birthdays. Grace, being the Southern Belle, has decided that she would rather climb to the roof of playhouse than load dishes in the dishwasher or answer the pretend phone. Again, we’re going to have trouble marrying these people off someday!!!

Thanks for checking in.

Notice that we finally updated the pictures....

Please continue to keep Jon, Jake and Andrew in your prayers!

Wednesday, July 03, 2002 at 02:50 PM (CDT)

Hi everyone -

Just a quick note to let you know that we're having a great week. The girls have been enjoying swimming lessons every morning, and we've been going back to the pool later in the day as well. Grace and Laura had a great birthday party on Saturday...it really couldn't have been better.

Grace wanted to go to Cracker Barrel and Putt-Putt for her birthday on Monday...so we did. Laura wants to go out to eat "noodles without any dirt on them" tonight. I'm not sure that what that says for the hygine at our house!?! We may go to the supercool Krispy Kreme doughnut shop in the Bank of America building tonight also.

Please continue to pray for Jake who's doing one more round of chemo to prep for sugery at Sloan Kettering and for Jon who's starting radiation at Duke in the next few days.

Thanks for checking in...

Friday, June 28, 2002 at 03:03 PM (EDT)

Hi everyone –

We’re busy preparing for Grace and Laura’s birthday party on Saturday. Grace will be 4 on the 1st and Laura will be 2 on the 3rd. They’re really excited about their party at Rich Park. We’re trying to be extra “celebratory” (is that a word?) since last year was such a flop. Grace was inpatient for her bone marrow transplant and was feeling lousy on her birthday and on Laura’s. This year will most certainly be better!!!

Dad is only working Wednesday of next week. We have some chores to do, but we’re planning on some fun stuff too. Grace and Laura got coupons for free doughnuts, bowling, Putt-Putt, and Warthog games for participating in the summer reading program at the library. We plan to take advantage of our freebees next week.

Please continue to keep Jake and Jon in your prayers. Jake’s family just found out that surgeons at Sloan Kettering in NYC were willing to remove his tumor! Please keep him in your prayers. Jon has been busy this week with trips to Brenner and Duke. Tim and Melissa are still working on a treatment plan with the doctors. Please pray that the plan will come together smoothly and that Tim and Melissa will feel good about it.

Thanks for checking in!

Thursday, June 20, 2002 at 04:22 PM (EDT)

Hello everyone –

We’ve been well. We had a great time at the Davie County Relay for Life on Friday night. There were so many people from our church and community there. It was a really uplifting and encouraging event for us. Those of you who live in the area may want to check out this week’s Davie County Enterprise. There’s a really good-looking family on the front cover!!!

We’ve been taking the girls to VBS at Macedonia this week. It has been great. They both enjoy everything about it. Hats off to everyone evolved in this ministry.

Mom and Grace are planning to attend a wedding this weekend. Grace is very excited. She loves to play wedding with her Barbies and Disney princesses. This will be her first chance to experience the real thing. We’re all going to the Howard’s for a cookout on Saturday night. With the girls along I’m sure there will be no lack of entertainment!

Grace and Laura were thrilled to find out that Hannah and Benjamin (I guess we should include Uncle Mark and Aunt Rene) are moving to Clemmons. They’ll only be about 5 minutes away…..much closer if a sleepover doesn’t work out!!!

Tomorrow is a huge milestone for us. It was one year ago Friday that Grace received her stem cells back for her bone marrow transplant. So much has changed for us since then. It’s really hard to believe how different Grace is today compared to last year. Looking back those seem like different people that lived in Durham and made it through the nightmare of transplant. Thanks so much for continuing to support us through your kind words, thoughts, and prayers.

Please remember Jake in your prayers. The docs at Duke have determined that his tumor is still inoperable. They’re working with the docs at Sloan-Kettering in NYC to see if they will take a chance on removing it.

Thursday, June 20, 2002 at 04:22 PM (EDT)

Hello everyone –

We’ve been well. We had a great time at the Davie County Relay for Life on Friday night. There were so many people from our church and community there. It was a really uplifting and encouraging event for us. Those of you who live in the area may want to check out this week’s Davie County Enterprise. There’s a really good-looking family on the front cover!!!

We’ve been taking the girls to VBS at Macedonia this week. It has been great. They both enjoy everything about it. Hats off to everyone evolved in this ministry.

Mom and Grace are planning to attend a wedding this weekend. Grace is very excited. She loves to play wedding with her Barbies and Disney princesses. This will be her first chance to experience the real thing. We’re all going to the Howard’s for a cookout on Saturday night. With the girls along I’m sure they’ll be no lack of entertainment!

Grace and Laura were thrilled to find out that Hannah and Benjamin (I guess we should include Uncle Mark and Aunt Rene) are moving to Clemmons. They’ll only be about 5 minutes away…..much closer if a sleepover doesn’t work out!!!

Tomorrow is a huge milestone for us. It was one year ago Friday that Grace received her stem cells back for her bone marrow transplant. So much has changed for us since then. It’s really hard to believe how different Grace is today compared to last year. Looking back those seem like different people that lived in Durham and made it through the nightmare of transplant. Thanks so much for continuing to support us through your kind words, thoughts, and prayers.

Please remember Jake in your prayers. The docs at Duke have determined that his tumor is still inoperable. They’re working with the docs at Sloan-Kettering in NYC to see if they will take a chance on removing it.

Tuesday, June 11, 2002 at 04:27 PM (EDT)

Hi –

We’ve been doing well. The girls are making the most of our pool membership this summer…they even let Dad tag along from time-to-time. We’ve been invited to a survivor’s dinner tonight as a part of the Davie County Relay for Life. We’ll be participating in the Relay on Friday night.

Please continue to pray for Jon and his family. He had surgery on Friday to remove the lesion on his brain. It was a NB tumor. Fortunately, it appears that the tumor was completely removed. He did great with the surgery and was released on Sunday. We visited with Jon briefly on Saturday in his hospital room. We were amazed by his appearance. We would have never known that he had surgery at all if it weren’t for the IV’s and the small bandage on his head! These kids continue to amaze me with their resilience. Tim and Melissa are facing one of the most difficult parts of this battle - waiting and wondering. The docs are trying to figure out the next step for Jon. Please pray that the docs will quickly make good decisions and that Tim and Melissa will be confident that they are doing the best for Jon.

I would also ask you to pray for Andrew. He had a BMT at Duke just prior to Grace. He had brain surgery on Friday as well and continues to suffer complications.

One more request – for Jackie. She had a BMT just after Grace at Duke. She returned to Duke for her one year check up last week. They found several concerning issues. The most upsetting was the potential of pre-leukemia cells. They’ll have to wait several weeks to confirm or deny this suspicion.

Thanks for continuing to check in on us….

Thursday, June 06, 2002 at 04:39 PM (EDT)

Hi –

I wanted to post a quick request for your prayers. I’ve mentioned on our site that Grace’s buddy, Jon, had a seizure three weeks ago and that he was having a follow up MRI this week to look at a lesion on his brain. Jon had an MRI on Monday. Initially, it looked like the lesion had not grown and the neurologist felt good about it. Under further scrutiny of the scans the docs are more concerned. They see some subtle changes from the previous scan and there is some evidence that the lesion could be a Neuroblastoma tumor. They obviously cannot leave that possibility open, so Jon is scheduled to have the lesion biopsied and removed on Friday. These plans are somewhat tentative.

Please pray that Jon will go through the surgery smoothly with no complications. Pray that they will find some benign and relatively minor lesion. Also, please pray for Tim and Melissa in the coming days.

Thanks for checking in.

Wednesday, May 29, 2002 at 04:40 PM (EDT)

Hi guys –

Everything has been going well for us. We went to Oak Island, NC for 5 days to celebrate Memorial Day. The weather was perfect! We could hardly keep the girls off of the beach while we were there. Neither Grace nor Laura has a fear of the water…keeping Mom and Dad busy so they wouldn’t wash away to sea. Nana went with us – I’m sure she was glad to get back to her nice quiet home with no middle-of-the-night lemonade and potty breaks (for Grace not herself!!!). On Sunday, we took the ferry from Southport to Fort Fisher to visit the newly enlarged Fort Fisher aquarium. It was very nice. There were so many things to see. Oddly enough, Grace was drawn to a very small tank that held some snails. She even made us go back for a second look. Go figure…. We also spent a little time exploring the downtown and marina area in Southport. We’d never been there and would love to go back and spend more time there someday.

When we returned from Oak Island we had a message from Jennifer, one of the Nurse Practitioners at Brenner. She gave us some information about a six-year-old girl who’s newly diagnosed with Stage IV NB. She’s had a biopsy of her primary tumor, but they were unable to resect the tumor. She’s just completed her first round of chemo with many more to follow. Jennifer asked us to call Sarah’s family (with their permission) to offer any tips and a listening ear. Susan spoke to Sarah’s mom Monday night. She sounded so much like we did nearly two years ago when Grace was diagnosed. Please pray for Sarah and her family. Also pray that we’ll find ways to help them the way so many other families have helped us.

The girls have a big week planned. We joined Oak Valley Pool this year. They went for the first time today and they had a blast. There’s a very large wading pool that’s just the right depth for Grace and Laura. Grace met some girls her age and they enjoyed playing together. Mom and the girls are meeting Nana and Jacob tomorrow to see Spirit (a new animated movie about a flying horse???). I’m sure they’ll be back at the pool on Friday.

Please continue to keep Jon Powell in your prayers. He’s feeling much better, but they’re still unsure why he had a seizure and what cause the lesion on his brain. He’s having a repeat MRI on June 3. Please pray that this repeat test would be completely clean. Jake Cortney is also having scans today. Your prayers for good results would be great. One more request, Mawmaw is having surgery on her shoulder Friday. Your prayers for a successful surgery and quick recovery would be appreciated.

Thursday, May 16, 2002 at 04:45 PM (EDT)

Hi folks –

We’ve been doing well. We had a great Mother’s Day. Grace made Mom a beaded necklace in preschool. She kept it a secret from all of us until Sunday. Mom wore it proudly to church! We went out to brunch and to Uncle Mark and Aunt Rene’s house for Mother’s Day and to celebrate Uncle Mark’s birthday. We went to Nana’s house for a hot dog supper as well. Grace had a little cold that kept her out of preschool on Tuesday, but she seems much better. She was able to attend the last day of the year today. Unfortunately, Laura has picked up the cold as well, but hopefully it will pass quickly.

We have a big weekend planned. We are going to the Forsyth County Relay of Life kickoff at the Dixie Classic Fairground on Friday night. Grace was invited to attend a dinner and to walk the survivors lap. We have Grace’s last soccer lesson on Saturday morning. We’re also planning to meet friends (Tim and Suzanne) at the Greek Festival (a little culture and a lot of food) at the Greek Orthodox Church after her practice. On Sunday afternoon were attending a Relay for Life fundraiser. It’s a hot dog supper and a kick ball game – survivors (Grace) vs. the joint boards (Dad). This should be fun. No one had better get my little girl out!!!

Please be in prayer for Grace’s buddy Jon Powell. His Mom and Dad took him to the ER in their hometown because he was choking on excess saliva. He had a seizure shortly after his arrival at the ER. He was transported to Brenner in Winston-Salem, where a CT indicated a lesion on his brain. Jon’s had many tests done since then (all with negative results – Thank God). The docs still don’t know how to describe this lesion and there’s a lot of uncertainty of where to go from here. Please pray for Jon’s health and comfort, for Tim and Melissa to have a sense of peace that only God can provide, and that the docs will make the right choices in diagnosing and treating Jon.

Thanks for checking in.

Thursday, May 02, 2002 at 03:58 PM (EDT)

Hi everyone –

We’ve been doing GREAT!!! Some of you may remember that Grace got sick on her Make-a-wish trip to Disney back in November. The folks at MAW had worked out a return trip since Grace was unable to complete her wish the first time. We just got back from that trip late on Tuesday. It couldn’t have gone any better. We spent one day each at Seaworld, Magic Kingdom, and Animal Kingdom. We took Mom’s birthday (Sunday) as a slow day to hang out at the kid’s village. We also went to GatorLand on Sunday (at Grace’s request) and went out to eat with some of Mom’s relatives that live in the Orlando area. We had a late afternoon flight on Tuesday, so we spent a few hours at EPCOT that morning before leaving for home. The girls both had a great time and were angels for the whole trip. They did get a little restless on the car ride home (thanks to Mawmaw and Pawpaw for playing limo driver and for dogsitting Sassy).

We were anxious to hear from the BIS results on Friday while we were at Seaworld. After much ado (that I won’t get into) we got the results early Saturday morning. We were so thankful that the results were negative…and it made the rest of the trip so much more enjoyable having that load off of our minds. Thanks so much to those of you who kept us in your prayers during this scare.

As always, thanks for checking in.

Saturday, April 27, 2002 at 07:33 AM (CDT)

Good Morning

We just received the results that we have been praying for. The clonogenic assay test results were negative; the culture did not grow any neuroblastoma cells.

Thanks for all of your prayers and support during this difficult wait.

Thanks for checking in.

Tuesday, April 23, 2002 at 04:32 PM (EDT)

Hi folks –

We’ve hit another snag with the BIS testing. It seems that the cologenic assay takes 10 days to culture. The 10 days aren’t up until FRIDAY….. I guess we’ll just try to think of other things while we wait.

Otherwise, we’re doing fine. Hope you are!!!

Thanks for checking in……

Thursday, April 18, 2002 at 04:53 PM (EDT)

Hello everyone –

Grace was discharged late Tuesday morning feeling much better. All of her cultures were negative, so it seems she just had some nasty virus. Thankfully, Laura has avoided it so far. Dr. C suggested that we keep Grace out of preschool and Sunday School for about a week until she gets a little stronger.

We got back the first half of the BIS testing yesterday. It showed 5 cells/million. This is not the answer we were looking for, but we’re trying to keep our heads on straight. The folks at Brenner and at Duke have each experienced a number of patients who had very low readings on this test and subsequently got a 0 on a following test. The testing is complex and no one really seems to know what a reading of less than 10 cells/million really means. For that reason we had already discussed making this our last BIS testing….I guess we just did one too many.

We paged Dr. Driscoll (Grace’s transplant doc) last night to discuss this with him. He’s become frustrated with these results, as have the docs at Brenner. He has spoken at length with the developer of the BIS test procedure. He is also unsure of what these results mean. He puts more focus on the second half of the test. It is called the clonogenic assay and it’s basically a culture of the bone marrow sample. We called the BIS lab this morning and they told us that the result would be back this afternoon, so we’ve spent the whole day working ourselves up into a complete frenzy….at 4:30 we found out that the result wouldn’t be back until Monday (UGGGGGGGGGGG). We can say one thing…..no result is better than a bad result.

Please pray for a negative result on the clonogenic assay. Also pray for our peace of mind. We’ve just about enough of this and we feel like we’re wasting these beautiful spring days fretting and worrying.

While Grace was inpatient, we ran into several familiar faces that we hadn’t seen in quite a while. It was disheartening to hear of the many, many kids that we’ve met along the way who have relapsed or died. We’ve seen this happen so many times, but it never stops being surprising and upsetting. Please remember these kids and their families in your prayers.

Monday, April 15, 2002 at 03:33 PM (EDT)

Hi folks –

No word from the BIS lab….still waiting…..

Grace had much fun last week. She went to pre-school on Tuesday and Thursday. She loved it!!! She was so proud of herself. She talked non-stop about all her new friends and the fun things they did. It seems that snack time is her favorite. We went to Chapel Hill on Friday to have her fitted with her hearing aids. There was quite a bit to learn about using the devices, but we feel fairly comfortable. At the audiologists advise, we’re introducing them slowly by allowing her to wear them for short periods of time a few times a day. She’s not apposed to wearing them, but she didn’t have the “Eureka” experience that some kids do when she put them on for the first time due to the type of hearing loss she experiences.

Grace started a six-week parent/tot soccer class on Saturday. She had a great time. She learned all kinds of “soccer moves” as she says. She was excited to show off her “moves” when she got home. Mom worked with Grace at the class. Dad entertained Laura on the sidelines. Dad’s job was much more challenging, as Laura definitely wanted to join the field of play with big sister. It was hard to push back the tears as Grace fumbled through the drills just like all the other 3-year-olds.

Unfortunatley, all the fun came to an end on Saturday night. Grace woke up with a fever about 3am. It shot up to 105 by 4am so we started Tylenol, cool compresses and a cool bath. We were able to get it down to a low-grade fever by morning, but by Sunday afternoon she was back up to 103. We called in to her doc and he directed us to the ER (ugh). The ER experience was actually pretty good, but they decided to admit her for hydration and IV antibiotics. (We could have chosen a direct admit and avoided the ER, but we were so sure they wouldn’t keep her!!!) She doing fine and so far her cultures are all negative. She should be discharged on Tuesday.

This has been a bit of a setback…but a very, very mild one in the grand scheme of things. We’re working hard to get Grace “patched up” so we’ll be ready for our Disney trip in a few days!!!

Take care and keep praying!!!

Monday, April 08, 2002 at 04:56 PM (EDT)

A very quick update to let everyone know that we have the results of the traditional bone marrow testing that was completed at Brenner. Everything was normal!! Thanks again for your prayers and notes of support. We will hear from the BIS results in a week or so.

We have some exciting normal kid stuff on the horizon. Grace is starting pre-school tomorrow unless something unforeseen happens. She’s really excited. She’ll only go a handful of times before the summer recess, but that will be just enough to “get her feet wet” for the fall session. We signed her up for a parent/child soccer class at the Davie YMCA. It is each Saturday morning. Now we just have to decide which parent is going to participate!!!!! We’re also “shopping around” to join a pool. We’re looking forward to having a fun-filled summer…just the way it should be.

We’re going to Chapel Hill on Friday to have Grace fitted with her hearing aids. She’s really excited about wearing them so she can hear better. We’re very hopeful that they’ll make a big difference.

Please continue to keep Jake in your prayers. Also pray for Miranda. She was our “next door neighbor” at Duke for about two months. She has ALL (leukemia) and they fear she may have relapsed. She’s back at Duke this week doing testing to find our for sure. Please pray that this is simply a false alarm. Her website is www.caringbridge.com/nc/mirandarae

Thanks for checking in.

Friday, April 05, 2002 at 11:29 AM (EST)

Quick update –

Grace did great for her scans and bone marrow aspirates/biopsy yesterday. The CT scan was completely clear!!! Her bone scan was normal as well. We’re still waiting to hear from the bone marrow testing. It should start coming in today and we will continue to get other results for the next couple of weeks. All of her blood counts and chemistries were great except for her platelets. They were at 81,000, down from last time and well below normal.

Thanks so much for your prayers and support. While yesterday was difficult, we were more at ease than at the 6-month scans. Please continue to pray that all the results would be fine.

We’re going to see “Dragon Tales Live” at the Greensboro coliseum on Saturday. The girls love watching Dragon Tales on PBS so they are completely hyped!

Please continue to keep Jake in your prayers. He’s supposed to start chemo today.

Have a great weekend.

Wednesday, April 03, 2002 at 03:59 PM (EST)

Hello all –

Thankfully, Grace and Laura recovered from their viruses and we were able to enjoy the weekend. We caught up on everything we hadn’t done yet for Easter. On Saturday we went to an egg hunt at Rich Park in Mocksville. We had a great time. The girls showed a bit of their personalities - Laura was very goal oriented. She would visually search for an egg and immediately head for it while looking for her next opportunity at the same time. Grace, on the other hand, was very happy to let the other kids in her age category scramble to find the eggs while she looked at birds, pick up rocks and pinecones, and wandered aimlessly. Grace only picked up 2 eggs even though there were over 5000 eggs to share among only 200 or so kids. She couldn’t have cared less! We also baked and decorated a bunny cake, dyed Easter eggs, and made an Easter bunny nest (family tradition) on Saturday.

We enjoyed a special church service on Sunday. The girls were great. We also went to Nana’s for lunch afterwards.

Please keep us all in your prayers on Thursday. Grace will be having her 9-month scans – always a trying time. We very much look forward to having it behind us! She’ll be NPO in the morning (nothing by mouth) and will have to get a peripheral IV since she no longer has her port-a-cath. This should be fun! The bone marrow aspirates and biopsy are scheduled for 9:00 in the sedation suite. Grace will have her abdominal CT at 11:00, after which we can pull the IV. The final test is the bone scan at 1:30. We’ll hopefully get some initial results tomorrow afternoon and Friday. Some of the bone marrow testing takes a week or more to complete. We have a laundry list of prayer requests for tomorrow:
1. That all the tests will be negative and Grace continues to have NED.
2. That Grace will be cooperative and that the testing will go smoothly. She’s could fight the NPO and IV.
3. That we will have a sense of peace. Thanks to your prayers we pulled it off last time, but we felt VERY shaky on “scan day.” Grace really deserves us to “keep it together” for her well-being.

Also, please pray for Jake. He’s relapsed and had surgery yesterday to biopsy the new tumors. The tumors were not removed and he was in a lot of pain following the surgery.

As always thanks for checking in.

Thursday, March 28, 2002 at 03:17 PM (EST)

Quick update on yesterday’s visit to Chapel Hill - It went great! We loved the audiologist…she was very knowledgeable and worked very well with Grace. She has just completed chemo and radiation to treat breast cancer, so we immediately felt a special bond with her. We now feel confident that we’re doing the best for Grace. She deserves no less. It looks like Grace will need to wear her hearing aids all the time…not just in a school setting. We’re hopeful that will help her understand others and us a little better. We’re starting to realize that she’s just been coping really well with her hearing loss and that she can’t hear much of what we’re saying. We’re going back on April 12 for the fitting. We have a lot to learn that visit.

The girls have switched viruses. Grace now has the stomach virus and Laura has the cold. Please pray that they’ll get better very quickly so they can enjoy Easter.

Also, please keep Grace’s upcoming scans and bone marrow testing in mind. It’s all scheduled for April 4. As the date looms closer it gets harder to keep the worry and fear pushed into a back corner of your mind!

Thanks for checking in…..

Monday, March 25, 2002 at 04:35 PM (EST)

I guess we’re overdue for an update! We’ve been having too much fun to write.

We went to WV on the 16th for Jon Powell’s 4th birthday party. It was great. It was wonderful to see Jon, Tim and Melissa in a “non-medical” setting. Laura and Grace had much fun and insisted on bringing home some “West Virginia balloons.” In Grace’s eyes they’re significantly different than those that can be purchased in the “Old North State.” I was nice to meet more of Jon’s family and see him in his “element.” Grace immediately decided we must have Jon down for her birthday party in July. The girls were angels all the way up and back. We did have to stop for an emergency potty break literally on the side of I-77…quite exciting….. We got ourselves together on the next day to attend church. It was Grace’s first Sunday back to SS in a few weeks following a case of chicken pox at our church. We realized after being at church for 10 minutes that another child in Grace’s SS class had the chicken pox a week before, so we had to pull her out of her class. She was really disappointed, but at least she didn’t make a scene at church!!! This starts another 3-week cycle before starting pre-school or SS.

We went to Blowing Rock, NC Monday – Wednesday (Dad was on furlough). We had a fantastic time even though the weather was kind-of tough. The girls’ favorite part was going to one of those cheesy gem mines in Spruce Pine. They both loved panning though the ore and searching for “treasures.” I think we brought home half gems and half gravel, but they were thrilled. Thanks to Tom and Carol for the use of your cabin.

The girls both developed viruses when we got home. Laura had a stomach virus for a few days. She’s better now. Grace had a weird “slight-cough-with-fever-in-the-evening” virus that’s been going around. The fevers have passed, but she’s still not completely better. We’re very happy that her port-a-cath has been removed as her fever broke 103 one evening, an almost certain hospital admission if she still had her port.

We have an appointment with an audiologist at UNC on Wednesday for a repeat audiogram and ear canal molds. Please pray that Grace will feel better so she’ll be up for the trip.

Funny Laura story…..Laura is defiantly not in a hurry to grow up. She loves the idea of being the baby. If you tell Laura she’s getting to be a big girl she very passionately tells you “me-me the baby.” If you ask her if she wears panties like Grace, Laura says, “me-me wears dipies.” Grace has this figured out and loves to torture Laura by telling her she’s a big girl and that she wears panties. Laura is doing all kinds of new “big girl” things, but she loves nothing more than to be held and carried around like a baby!

Friday, March 15, 2002 at 10:59 AM (EST)

Hello everyone –

No big news to report….we like that. We took the girls to the NC Zoo in Asheboro last Saturday. We started with a little rain, but the sky cleared and we ended up with a perfect day. The baboons were the girls’ favorite. They were very active while we were observing them, and many of their antics reminded us of Grace and Laura. On Sunday, we celebrated Mama Ruth’s (the girls’ great-grandmother) birthday by going out to eat lunch. We also went to Mawmaw and Pawpaw’s for cake and ice cream afterwards. As always, the girls both enjoyed playing with Ben and Hannah. Hannah and Grace were scheming for another sleepover. We’ll have to plan one soon.

We’re going to WV tomorrow for Jon Powell’s birthday party. Everyone is looking forward to it. We’ll have to pack lots of travel entertainment since we’ll be driving up and back in the same day! Dad is on furlough again next week so we’ll be catching up on errands and appointments. We’re also going to spend some time in Blowing Rock as well.

Please continue to keep Jake in your prayers. He’s scheduled for surgery on April 2 to biopsy the two new tumors that were recently discovered.

Thanks for checking in…..

Friday, March 08, 2002 at 1:29 PM (EST)

Hi folks –

We’ve been having a great week. Grace has taken a jump in her activity level. She also just “looks good” to us. Maybe it’s going off Accutane, maybe its just time, but whatever the reason we’re thanking God for her continued healing. The girls have enjoyed going to the park a couple days this week. We keep thinking that will wear them out, but it just seems to rev them up!!! Grace got to play with some other kids on the playground this week. She seemed to enjoy it. She offered to share her sand toys with the other kids, but was quick to tell them that they would have to give them back when she had to go home. She asked Mom it was okay for her to share her toys, or if the other kids had to many germs. She even said that one of the kids was “barking his head off.” We have some major de-programming to do some day!!! For now we’ll leave her on germ patrol.

On the medical front - We got the chicken pox titer back and Grace lost her chicken pox immunity during her ABMT. While she’s doing great, the docs remind us that she still doesn’t have a completely normal immune system. That means at this point she’d have to be hospitalized and given anti-viral drugs if she developed chicken pox. She also can’t get the chicken pox vaccine (it’s a live vaccine) until she’d at least 19 months from her transplant. So…we’re going to keep her out of pre-school (where there’s been a case of chicken pox) and Sunday school for a couple of more weeks. If no one else develops the chicken pox we’ll proceed with caution. We’ve also found out that we’ll eventually have to start the process of repeating most of her immunizations. YUCK.

On the hearing front – Grace had a speech/language evaluation this week. She was very cooperative and did great. We don’t have the results yet, but suffice it to say you have to miss three questions in a row before they stop the testing. The therapist couldn’t stop until Grace was unable to answer the 9-year-old questions. For the speech portion, she was missing some sounds, but it doesn’t seem that any of the missing sounds would be inappropriate for a 3-1/2 year-old. We’ll know more when we get the final results, but the therapist said she would only need monitoring and parental interventions, not direct services. (Yeah…..one less appointment to worry about). We also completed a referral to have Grace identified by the school system as hearing impaired. We’re hoping by starting early that we’ll have a smooth transition from pre-school into kindergarten. It’s hard to believe that’s only a little over a year away. Grace also had an exam from an ENT this week to confirm she had no structural cause for her hearing loss. Everything checked out fine. After quite a bit of researching we’ve decided to move to the speech-language group at UNC-CH. They are offering technology that the folks at Wake Forest can’t provide. They also have pediatric audiologists and a pediatric program that’s very well respected. It will be a bit of an inconvenience at first to drive to Chapel Hill for hearing related services, but we feel it will be worth it in the long run. We’re going for a repeat audiogram and ear canal impressions on March 27. She’ll be fitted with her hearing aids/FM about two weeks later.

Please keep Jake Courtney and his family in your prayers. Jake had an ABMT to treat his Neuroblastoma just prior to Grace. They were discharged from Duke’s transplant unit just before Grace was admitted. He just completed his 9-month scans and they’ve found two new tumors – one in his chest and one in his abdomen. This is obviously devastating news for his parents. His web site is www.caringbridge.com/nc/hopefor I’m sure that any word of encouragement would be welcomed.

Monday, March 04, 2002 at 04:55 PM (EST)

Hi folks –

We’ve been well. Grace has continued to “recover” from her surgery as if nothing ever happened. We were all disappointed that Grace couldn’t start pre-school last week. One of the students went home with chicken pox the last Monday. After multiple calls and e-mails to the docs at Brenner’s we decided to not send Grace to pre-school or Sunday School until we get some resolution to the issue. The folks at Brenner’s suggested that we do a repeat titer to see if Grace retained he immunity to chicken pox through her transplant (she had been vaccinated for CP prior to diagnosis and had a positive titer prior to transplant). That titer came back negative meaning she lost her immunity to CP during her ABMT. That being said – we’re back in the middle of dialog with the docs at Brenner’s to decide our next step (ie continued partial isolation or going ahead with a repeat of the vaccination).

We’ve also found ourselves in a mess with the audiologists. The folks at Brenner’s and the folks at UNC are recommending different devices. We have only consulted with the folks with UNC based on a fax of her audiogram…so we may be traveling to Chapel Hill soon to get their thoughts more defined. Grace will have a speech-language evaluation in our home on Wednesday by one of the Davie County School speech therapists and she’ll have an ENT evaluation at Brenner’s Thursday to rule out any structural cause for her hearing loss.

A couple of neat things did happen last week. For one, the girls tried to make the best of Thursday (the day Grace was to start pre-school). After going to the clinic for a blood draw for the titers they drove to Nana’s and took her lunch for her birthday. On Sunday, we went to a dinner at Mawmaw and Pawpaw’s church. It was so nice to see many familiar faces from my childhood and to very quickly thank them for their tremendous support.

I guess we’re in a state of flux right now with everything….but these are not life and death issues, so we’re thankful.

Thanks for checking in……

Monday, February 25, 2002 at 03:47 PM (EST)

Hi folks –

We had an eventful and mostly upbeat week. Grace had a great time with Hannah last weekend at their sleepover. They even went to sleep around 9:30 and we didn’t hear a peep out of either of them until morning. Grace said she woke up several times and saw Hannah in her bed, so she smiled and went back to sleep! We went to the state cheerleading championships and Davie High won first place! We went to Dairy Queen afterwards so Grace and Laura could show Hannah the proper way to eat a Dilly Bar.

On Monday, we took Grace in for a clinic visit and pre-op assessment. Both went fine. She had the best blood counts she’s had since her ABMT in June. Her platelet count had DOUBLED since the last check. We also had an audiogram to check Grace’s hearing. Unfortunately, we got the result we have been dreading. Her hearing loss is much worse than before her transplant. Her low frequency hearing remains nearly normal, but she has significant losses in the mid and high frequencies. The losses are so great in the high frequencies that we can’t expect her to hear those sounds even if they are amplified. Without an assistive devise, there are certain consonant sounds that Grace can’t hear. It was the general consensus on Monday that Grace could be helped by an FM system/hearing aids. Digital hearing aids can amplify certain frequencies more than others, but Grace’s audiogram is so “steep” (with nearly normal hearing at the low frequencies and severe losses in the higher frequencies) that it will be difficult to correct. The FM system is an added component to a special hearing aid that can broadcast sound directly to the listener. This would be used for Grace in noisy situations such as preschool and Sunday School. The teacher would wear a microphone so that her voice would be amplified over the din of the classroom. We’re also working with the folks at UNC-CH. They have a national reputation in dealing with pediatric hearing loss, so were tapping into that resource as well as Brenner’s.

While facing the realities of a life-threatening illness helps to put this all in perspective, it’s still taking us a while to get used to the idea. Were most concerned about saddling Grace with one more thing to deal with. On the plus side, if we can get a devise that works well for Grace, it will help her to continue with normal speech development. It should also help her to hear her teacher better as she starts preschool. Grace has also told us that she sometimes plays by herself in Sunday School because she can’t hear the other kids speaking. We’re hoping she can overcome that as well.

We went to see “Return to Neverland” on Wednesday, which Grace thoroughly enjoyed and Laura slept through (thumbs up on both). Dad also got to go with the girls to story time and the library on Wednesday.

Grace had her port-a-cath removed on Friday morning. It went great. She was even taken early because the first surgical appointment was cancelled as the parents forgot the appointment. How can you forget your kid’s having surgery??? The incisions are healing fine and Grace was able start getting the site wet on Sunday. She had one incision for the port removal and another to repair an ugly scar that was left behind after her central line was removed.

We have several prayer requests –

1. Grace starts pre-school on Thursday! This is a praise and also a prayer request that things would go smoothly.
2. That we would make good choices in dealing with Grace’s hearing loss.
3. For Jon Powell. His parents have had to deal with more nuances in test results. He’s doing fine, but even the hint of irregularity is very stressful. Please pray that things will continue to go well for the Powells, and that they will be able to completely resolve their latest issues.
4. For all the kids and parents who would love to be dealing with survivor issues and hearing loss. A lot of this kids we’ve met have many remaining problems and far too many parents have lost their kids.

Thanks for checking in….

Friday February 15, 2002 12:56 AM CST

Hello everyone –

Sorry for the lapse in updates. We’ve been fine. Laura is over her flu and thanks to the flu shot, no one else got sick. Grace had a few sniffles and a little cough, but that’s as far as it progressed. We’ve been doing all the normal stuff. We went to one of Jacob’s (Grace and Laura’s cousin) basketball games on Sunday…we were very impressed. The game was played at Mom and Dad’s middle school. I guess it’s been almost 20 years since we had been inside. What a walk down memory lane…I think they still had some of the same posters on display!

We had a nice Valentine’s Day at home. Mom made a big meal. The girls frosted and decorated a heart shaped cake. They thought it was beautiful?!?!?! They also painted a really cool tee shirt for Dad. It has their handprints and other drawings on it.

Sassy is doing well and is really starting to seem like part of the family – much like the girls he’s devilishly charming and exceedingly needy. The girls give him quite a workout some days. He’s always good-natured about their antics.

Grace is having her first sleep over tonight. We’re meeting Mawmaw, Pawpaw, Uncle Mark, Aunt Rene, Benjamin and Hannah at the convention center tonight for the annual Pancake Jamboree. Hannah is coming home with us to “sleep over.” Let’s hope we get some sleep. We plan to take our girls and Hannah to the coliseum tomorrow for the high school cheerleading NC state final championship. Our own Davie High team is competing. It should be perfect as it will be loud and involves a lot of screaming and jumping around.

Dad’s on furlough next week and we’re making the most of it. On Monday, Grace has a pre-operative appointment with Dr. Letton, her audiogram, and a clinic visit. Sassy has an appointment at the vet for the afternoon as well. On Tuesday, Mom and Grace are going for a trial run of pre-school. They’re going to visit the classroom and met with Grace’s teacher. She should start the following week. Wednesday is typically the girls’ big day out. They go to story time at the library and then they follow up by doing something special like going out to eat, going to the park, or shopping at the mall. This week Dad gets to tag along and we’re going to see “Peter Pan II, Return to Neverland.” Grace will have her port-a-cath removed on Friday. She’s due at pre-op at 7:15 and the surgery is scheduled for 8:30, but that could change.

Please continue to be in prayer for Kevin’s family. Kevin went on to be with the Lord last Friday, February 8.

Wednesday February 6, 2002 2:53 PM CST

Hi everyone –

We had a nice at-home weekend. We picked up Sassy on Saturday morning. He is such an agreeable puppy. The girls love to play with him, push him around in their baby doll stroller, toss balls to him, and in general keep him busy. Laura can be a little reluctant when Sassy jumps around her feet, but she’s getting more comfortable with it. Our biggest challenge is housebreaking! He’s actually doing really well, but we haven’t had a day yet without a couple of accidents. I guess if we can potty train Grace – we can potty train Sassy…..

We got it together to attend our church’s new 8:45am worship service. It was great. There is no children’s church for the early service so both of the girls stayed with us. They were still too sleepy to get into much trouble. We also fed them their breakfast (Nutragrain bars), which kept them entertained for quite a while. Grace continues to enjoy her Sunday school class. Laura enjoys the nursery as long as Mom or Dad stays with her!!!

We are very thankful that Grace completed her last dose of Accutane yesterday. It has been making her increasingly irritable. She’s usually back to her old self just a day or two after going off the drug. We have taken a bold leap of faith and scheduled surgery to remove Grace’s port-a-cath on the 22nd. We have a consultation with Grace’s surgeon on the 18th as well as an audiogram and a check up by the hem/onc group. We’re going to see plenty of doctors that week - Sassy is also due to go to the vet. Fortunately, Dad’s on furlough that week.

Grace has become quite the nature lover. We lost a large cedar tree in our front yard Monday, due to the high winds. Grace was so upset. She made us keep a few limbs before the landscapers took away the tree. She is also really into the ocean and ocean life. She’s learning the names of quite few fish and other sea creatures.

Laura seemed to be catching a cold yesterday. We took her to the pediatrician’s after-hours clinic last night because she was running a fever. The doc told us she has the flu and double ear infections. She feels pretty crummy today. Grace had a flu shot, but she’s coming down with something as well. Please pray that she will not run fever…that would mean a hospitalization for her. I’m not sure how she would take that at this point…I’m not sure how any of us would take that at this point.

Thanks so much for your prayers and notes of encouragement. Please continue to remember Kevin Situ who continues in an ever-deepening coma. Also, remember Jon Powell. He's at Duke today and tomorrow to complete his 1 year post-transplant testing.

Wednesday February 6, 2002 2:53 PM CST

Thursday January 31, 2002 10:17 AM EST

Hi folks –

We’ve been doing well. Laura had her 18-month check-up on Tuesday. She was supposed to catch up on her immunizations, but she was only able to get one of the three she needed. It seems that there’s a nationwide shortage on some vaccines due to the increased production of the small pox vaccine and other vaccines associated with a terrorist-threat. Hopefully, she’ll get the rest in the next few weeks. She had an abdominal ultrasound. This is at our request, but our pediatrician is glad to oblige. It was completely normal of course. Once you’ve faced the NB beast, its hard not to worry about facing it again! She had a CBC as a part of her standard 12-month check up this past summer. Mom remembered to ask about the results. Laura’s platelet count was more than 4 times what Grace’s is now!!!! If we just averaged the two numbers, they would both be normal.

Grace was a giant when she was Laura’s age, so we always tend to think of Laura as a shrimp. She’s not going to be able to wear many of Grace’s 2-year-old summer clothes. (They are “diagnosis era” anyway so that’s not such a bad thing.) We were amazed to find out that Laura’s in the 30th percentile for weight and 95th percentile for height.

Grace had a great time at her “drop off” at Mawmaw and Pawpaw’s house. She must have played hard, because she came home exhausted. She’s not had as much trouble with her skin this last round of Accutane. The warmer, damper weather seems to have helped. It has definitely affected her energy level and made her a little cranky. Just five more days…….

We don’t have a lot of plans for the weekend other than picking up Sassy. That probably will be our weekend!

Thanks for checking in……

Monday January 28, 2002 3:30 PM EST

Yet another prayer answered!!!

The BIS lab results show 0 NB cells/million!!!!! This was the result we were waiting for. The BIS lab will continue to “culture” the marrow sample to attempt to grow a colony of NB cells. This is called the clonogenic assay. It is very unlikely that we will see any result from the clonogenic data since the initial result was 0 cpm. We can breathe easier for another three months. Thanks again for all the prayer and support during this wait.

Grace is currently taking her last round of Accutane. It will be complete on February 5. At that point she will be off of all her meds. We will be going to Brenner for a check-up and audiogram on February 18. We will likely have Grace’s port-a-cath removed shortly afterwards! With all of the good news and the ending of treatment, we pray that we’ll be able to let more of this go. It has been hard to live our lives like “normal people,” but we’re doing our best.

We had a very nice weekend. We went to visit Sassy (our new Maltese puppy) on Saturday and take him some blankets and chew toys. The girls were excited, but Mom is the one we had to drag away. We get to pick him up next Saturday - then the real fun will begin. We left Sassy’s house and went to Mattie Wall’s birthday party. She turned 3. Grace and Laura were pretty well behaved and had a good time. Mom started feeling pretty puny with a cold on Saturday evening, so Dad braved church alone with the girls on Sunday. We went out to Tanglewood on Sunday afternoon to play on the playground equipment.

Mom is taking Laura to the doctor tomorrow morning for her 18-month checkup. She’ll catch up on all her vaccinations – poor Laura. Grace is looking forward to a “drop off” at Mawmaw and Pawpaw’s house. We’ll have to push Grace out of the bed to get her to her “drop off” by 9:00. These girls would never make it in a two-income household!!!

I’m going to list the websites of three boys who we meet during Grace’s transplant. They all really need your prayers. Of particular concern is Kevin, who’s been in a coma for several days now.

Kevin – www.caringbridge.com/de/kevinsitu
Taeler – www.caringbridge.com/fl/taelerhurwitz
Evan – www.caringbridge.com/nc/evan

Thanks for checking in.

Tuesday January 22, 2002 5:05 PM EST

Quick update –

We got more good results from Grace’s testing last week. The pathologists at Brenner analyzed the bone marrow biopsy and aspirate today. They detected no NB cells and they also indicated from the biopsy that Grace had excellent engraftment from her BMT. Another couple of our prayers answered! We’re still waiting for the more sensitive testing from the BIS lab to be complete.

The girls have discovered a brand new playground that’s been added beside Mallard Lake in Tanglewood Park. It’s very nice and has lots of ladders, climbing surfaces, and slides. It’s great for the girls because its physically challenging, but safe. Mom and the girls met another family there today. There were two brothers – one a month older that Grace and one a month older than Laura. It was fun for them to play with kids their own age. The older boy told Grace, “I can climb this piece all by myself.” Grace responded, “so can I” as she proceeded to show him. Way to go girls!!!! So those boys what your made of!!!

Thanks for checking in. Take care….

Thursday January 17, 2002 3:33 PM EST

IT’S A DAY OF GOOD NEWS!!!

We have the final results of Grace’s CT and bone scan. Both were negative!!! Praise God!!!!!!!! Thanks to all of you who have lifted Grace, and the rest of us of up in your prayers today. We are so thankful to the folks at Brenner. They do such a great job. All the scans went smoothly. One of the pediatric radiologists/imaging specialists, Dr. Anthony, has done Grace’s last two CTs. She’s great. Her husband is in remission from a rare form of pediatric cancer (that only reared its ugly head in adulthood), so she’s very understanding. She always gives us an immediate “thumbs-up” as soon as the scan is complete. We understand that it’s an initial result, but it’s still very comforting!!! We return to Brenner tomorrow for Grace’s bone marrow aspirate at 9:00. Thanks in advance for the continued prayers.

We have two make-a-wish updates.

The folks at Give Kids the World in Florida had told us before we left to come home that some wish agencies would repeat a wish if the kid only got to enjoy half or less of their trip due to illness (which was the case with Grace). We didn’t really think that we would pursue this option. We were disappointed that Grace and Laura missed so many of their day’s in the parks, but it was obviously in no way a reflection on GKTW or Make-A-Wish. We thought that as time passed, we would feel better about the trip…..the girls never did. Every time they saw Disney ads on TV, both would start talking about all the things they didn’t get to do…sometimes even crying about it. Dad decided enough was enough and called MAW last week. They have agreed to repeat our trip!!!!!!!! It will be without a few of the bells and whistles, but that is just fine with us!!! Right now we’re considering going back in late April. The girls are sooooo excited.

MAW has a program in which schools or classrooms raise funds for MAW. They select a specific wish kid to target their funds. This makes it seem more real to the students. Unbeknownst to us, Grace was selected by a second grade classroom at Eastover Academy, somewhere near Charlotte. The kids in this class collected over $2000 this fall to support Grace’s trip! We should be getting a packet of info in the next few days telling us more about the school. We’re so excited to be able to thank the class and to send down some photos from our trip. MAW is a really first class organization; any support that you can provide to them will be a good investment!

Please continue to pray for Jon, Andrew, Taeler, and Evan. Evan has been transported back to the transplant unit at Duke. He has multiple areas of infection. One is a fungal infection in his lungs, which is quite serious in immunosuppressed patients. Also, pray for Kevin, who in back in the transplant unit. He is struggling to hold on to his life.

01-15-02 5:15 PM

Hi folks –

Things are good around the Cain house. On Thursday, Mom and Dad got their first chance to give blood since Grace’s diagnosis. We’ve been wanting to donate for a long time, but we’ve just been too tired, busy, or ill to be able to give….two units down only about 150 more to go!!!

We had a really neat experience this weekend. Grace has wanted a housedog for a long time. We’ve promised her that we would get her a dog once all her treatment was complete. Santa brought a lot of the supplies (treats, bed, bowls, etc.) with the promise that Mom and Dad would provide the dog shortly after Christmas. We’ve done a lot of research and decided that we wanted a Maltese. We wanted to buy from a reputable breeder, and it seemed that we kept running into dead ends. On Friday, Mom called a breeder that had an ad in the newspaper. The conversation sounded promising…there were three puppies…the mom and dad dogs were family pets…all the dogs lived in a house with three small children. Everything seemed to be coming together. As Mom spoke more with the lady they discovered a really amazing fact…the breeder’s five-year-old son is a Neuroblastoma IV-S survivor! Who would have thought that of the 500 or so cases of Neuroblastoma diagnosed each year in North America we would run into another family outside of the hospital setting? We of course took this as a sign and made plans to see the dogs on Saturday morning. All three were adorable and nothing would do but to leave a deposit on Sassy! The only female had been spoken for, so Dad will finally have another guy around the house. Dad has said all along that he wouldn’t allow a male dog to be named Sassy, but how can you say no to those girls? He did draw the line at a hot-pink collar! The dogs were born on Christmas Eve, so we won’t get to pick Sassy up for a few of weeks.

Please keep Grace in your prayers this week. She will have an abdominal CT at 8:00 on Thursday. Her bone scan is at 12:00. On Friday, Grace will have bilateral bone marrow aspirates at 9:00. We hope to hear from the CT and bone scan late Thursday or Friday. The bone marrow sample is sent to a lab in LA and the results take a couple of weeks. Please pray that the testing goes smoothly for Grace. She has to cooperate by holding completely still for the two scans. The biopsy requires anesthesia. We also ask you to pray that the tests would indicate that Grace continues to show NED and that the results are clear with no vagueness. A few other prayer requests:
1. Jon Powell will be having scans on Thursday as well
2. Evan, a boy we met during transplant, is at Brenner fighting a repertory infection
3. Andrew, a boy we met during transplant, has returned to Duke from Alabama to deal with a line infection
4. Taeler, a third boy we met during transplant, has returned to Duke from Florida. He’s facing multiple issues including a line infection, an infection of his spinal fluid, and an inflamed gall bladder that required removal. Taeler will be in Durham for several weeks, which is obviously a big burden on his family.

Thanks for keeping all these kids in your prayers.

Thursday, January 10, 2002 at 04:32 PM (EST)

Hi everyone –

We’ve been having a good week. On Saturday, we played in the snow and visited friends (the Wall's) that evening. We stayed home on Sunday morning, due to the questionable weather. Mawmaw and Pawpaw came over in the afternoon to watch Grace and Laura while Mom and Dad went to a memorial service for one of our neighbors. Mawmaw and Pawpaw stayed to enjoy supper with us.

The girls went to storytime at the Clemmons library on Wednesday. Laura is finally starting to participate. She oftentimes looks around at the kids singing and doing motions to songs like “these kids are weird.” I guess she’s decided that, “if you can’t beat ‘em, join ‘em.” Afterwards, they enjoyed lunch and ice cream at Dairy Queen (the Village Soda Shop is closed to reopen under new management!!!!). They went to Tanglewood Park today to enjoy the beautiful weather.

After much begging, pleading, e-mailing, paging, sleuthing, and threatening, we finally have the results of the immunology study that was sent to Duke in early November (in our hunt for the results we found out that the tests were completed 11/26….uggggggggg). The good news….the results indicate that Grace’s immune system is well on its way to recovery. She will not have to repeat her immunizations and Laura is now able to proceed with her live vaccines, which had been delayed. This is also an indication that her immune system is now adequate, although not completely normal. That’s great to hear during cold and flu season!

A couple of funny Grace and Laura stories –
1. Dad gave Mom the Bee Gees Greatest Hits CD for one of her Christmas gifts. Grace and Laura love it!!! They love to dance to Stayin’ Alive, Night Fever, How Deep is Your Love, and Emotion among others. All we need is a disco ball and some bell-bottoms to complete our ‘70’s flashback!
2. We recently saw a video clip on the evening news of Afghani women enjoying the lightened dress codes now that the Taliban are no longer in power. There were several women standing together outside in Kabul speaking to the reporter. Grace said, “I’ve been there.” When we asked her where the women were she said, “the Apple Festival.” Evidently, Grace has visited parts of Wilkesboro that we’ve never seen!

Thanks for checking in.

Thursday, January 10, 2002 at 04:32 PM (EST)

Hi everyone –

We’ve been having a good week. We went to Nana’s on Saturday to celebrate Aunt Tammy’s birthday. Both of the girls had a great time. We stayed home on Sunday morning, due to the questionable weather. Mawmaw and Pawpaw came over in the afternoon to watch Grace and Laura while Mom and Dad went to a memorial service for one of our neighbors. Mawmaw and Pawpaw stayed to enjoy supper with us.

The girls went to storytime at the Clemmons library on Wednesday. Laura is finally staring to participate. She oftentimes looks around at the kids singing and doing motions to songs like “these kids are weird.” I guess she’s decided that, “if you can’t beat ‘em, join ‘em.” Afterwards, they enjoyed lunch and ice cream at Dairy Queen (the Village Soda Shop is close to reopen under new management!!!!). They went to Tanglewood Park today to enjoy the beautiful weather.

After much begging, pleading, e-mailing, paging, sleuthing, and threatening, we finally have the results of the immunology study that was sent to Duke in early November (in our hunt for the results we found out that the tests were completed 11/26….uggggggggg). The good news….the results indicate that Grace’s immune system is well on its way to recovery. She will not have to repeat her immunizations and Laura is now able to proceed with her live vaccines, which had been delayed. This is also an indication that her immune system is now adequate, although not completely normal. That’s great to hear during cold and flu season!

A couple of funny Grace and Laura stories –
1. Dad gave Mom the Bee Gees Greatest Hits CD for one of her Christmas gifts. Grace and Laura love it!!! They love to dance to Stayin’ Alive, Night Fever, How Deep is Your Love, and Emotion among others. All we need is a disco ball and some bell-bottoms to complete our ‘70’s flashback!
2. We recently saw a video clip on the evening news of Afghani women enjoying the lightened dress codes now that the Taliban are no longer in power. There were several women standing together outside in Kabul speaking to the reporter. Grace said, “I’ve been there.” When we asked her where the women were she said, “the Apple Festival.” Evidently, Grace has visited parts of Wilkesboro that we’ve never seen!

Thanks for checking in.

Thursday, January 03, 2002 at 03:14 PM (EST)

I guess we’re really past due for an update!

Things have been going well at the Cain house. We all shared a cold before/during the holidays, but we have recovered just fine. It didn’t keep us from doing much of what we had planned. We had parties with Mom’s family and Dad’s family and of course our own celebration at home on Christmas morning. We mostly enjoyed the family time together (Dad was off work from December 20 – January 2) and visiting extended family. Santa brought everything the girls had asked for including all of the supplies we’ll need for Sassy (a dog for the girls). Now we just have to pick out and purchase Sassy! What were we thinking??????

Grace passed a milestone over the holidays. She is officially potty trained (during the day). We had been working on this for a little while since Grace has felt well enough to deal with it. We tried again after Grace got over her cold and she hasn’t had an accident yet! We’ve been to see family, shopping at the mall, and to church without a glitch. She’s so proud of herself and loves to show off her “results.” We might start going overnight without a diaper in a few weeks. Hopefully we’ll be down to one kid in diapers soon!

Dad got the opportunity to go to the NCSU vs. Maryland game on Sunday afternoon. Unfortunately, the Wolfpack let us down, but it was still great fun. Pawpaw, Uncle Wendell, and Brad Wall joined Dad. Thanks to Dr. Setzer (Dad’s dentist) for the tickets and parking pass!

We received about 5” of snow last night and this morning. The girls played outside for about an hour. They all had a blast. Laura and Mom were ready to come in, but Grace was still going strong. Mom had to promise Grace that Dad would take her back out tonight in order to get her in the house. I guess we’ll be playing in the dark!

We have been enjoying a clinic-free period since December 18. Grace is back on Accutane until next Tuesday. It has been more drying to her skin this time, we assume due to the cold, dry winter air. She doesn’t have anything planned until Thursday, January 17 when she’ll have blood work and her 6-month scans (an abdominal CT and a bone scan). She’ll have her bone marrow aspirates done the next day. We should also have the results of her scans that Friday (the aspirate results will take a couple of weeks). Please pray that the results will be clear and negative and that we would have a sense of peace before, during and after these scans. It seems like we’re “waiting for the other shoe to drop” during this otherwise great period and we’d love to shake that feeling! Please keep Jon Powell in your prayers as well. He’ll be having his 1-year scans done the same day as Grace.

Thanks for checking in.

Wednesday, December 19, 2001 at 04:20 PM (EST)

Hi folks –

Quick update. Grace’s audiogram was cancelled yesterday because she had the beginnings of a cold. That would obviously adversely affect the result. We’ll have to reschedule after Christmas. We did flush her port-a-cath (which went just fine) and drew labs. Her lab results look good. Her platelet count is still pretty low, when compared to normal, but the rest of her counts are very close to a “normal” person’s.

Both Grace and Laura have a cold. We’re hoping they’ll get over it before our family Christmas parties next week.

Thanks for keeping us in your thoughts and prayers.

Monday, December 17, 2001 at 12:04 PM (CST)

HI folks –

We’ve been good. We went Christmas caroling on Wednesday and it was great. It really put us all in the Christmas spirit. We also went to a Christmas concert on Saturday night at the coliseum. Grace enjoyed it, but Laura would have rather been down and running around. I’m sure the folks in front of us were glad to see us leave about ¾ of the way through! We went to Sunday School and worship yesterday. We had planned on just attending SS, but Grace was too excited to leave. Laura even made it through without us, although she did move down to Grace’s class during worship.

On Sunday morning Mom was going over the day’s agenda with Grace. She likes to be “in the know.” When she told Grace that we were going to Macedonia’s live nativity in the evening, Grace wanted to know why she couldn’t be in the “bible story.” We tried telling her that she was too little, but that didn’t seem to suit her. We kind of forgot about it until it was announced in worship that they needed a few more angels in the play……..Lisa, our children’s ministries director said that Grace would be fine for the play…..so we got a costume and said a prayer. Grace was so excited. She was the smallest angel and some of the other older girls lead her through the motions. During the first song she decided she would do a little dancing. This, of course, was a “moving of the Spirit,” and not rehearsed. She started out standing on the lowest step of a riser, but slowly worked her way up to the top as the program progressed. All we could think of was her long gown, how unstable she is at times and her pitiful platelet count. Thank God that when she made it to the top Ashlynn, an adult angel, was there to steady her. She was so very proud of herself and we were proud as well. As a side note, when Grace tried on her gown at home, Laura couldn’t understand why SHE couldn’t be an angel. That is pushing it, so we let Laura don a white beach cover-up and pretend at home!

Please be in prayer for Grace tomorrow. We are visiting the audiologist tomorrow for an updated audiogram. We will decide from tomorrow’s results what, if any, treatment is needed for her hearing loss. Pray that she’ll be cooperative. The test requires a lot of participation on her part (she’s usually great). Also pray that we will have wisdom in make treatment choices. Following the audiogram, she has to go to clinic to flush her port-a-cath and for a blood draw. When will the fun stop?????

Thanks for checking in……

Tuesday, December 11, 2001 at 03:42 PM (EST)

Hi folks –

We’ve been fine. We went for a carriage ride in Mocksville last Wednesday. We ran into one of Mom’s old work buddies, Janell, and her family. It was nice to see a friendly face while we waited for the ride. On Saturday, we went to the Advance Christmas Parade. It was a load of fun. The girls left with bags of candy. I don’t remember this practice from when I was a kid. Grace was excited to see the kids from Macedonia’s Preschool on a float. She said she was planning to be on the Preschool float next year! We had some friends we met in when we used to live in Statesville, Tim and Suzanne, over for dinner on Saturday night. They provided great entertainment for the girls. Next time, Mom and Dad will go out and leave the girls with the Howards!!! We made it to church again on Sunday (although it was a bit of a struggle.) Grace is already starting to understand the routine of being dropped off in SS. She had a great time. Laura wasn’t so sure, so Dad stayed with her. We took them into worship………let’s just say we didn’t get that much out of the service. We’ve got to work on getting an attention span of more than 20 seconds!

We have a few plans for the rest of the week. On Wednesday we’re planning to go Christmas Caroling with our church. It’s always a lot of fun. We visit mostly older folks from the congregation. Most of those we visit can’t get out of the house to church very often. We’re so happy to be on the giving end of this ministry this year rather than the receiving end! On Saturday we’re going to an annual Christmas concert at LJV coliseum. You bring canned food as the admission price. It’s an outreach of the Salvation Army that brings in more than 100,000 cans of food each year. We were able to attend last year even though Grace had just been discharged from her tumor resection a couple of days before. It was definitely a highlight of last year and we’d like to make this an annual event for us.

Grace story – Grace has a very vivid imagination. She makes up all kinds of stories about crazy things that her “friends” do. It’s been a little sad that all of her friends are fictional – Pooh Bear, Piglet, Eeyore, Tigger, Christopher Robin, and Zak and Weezie from Dragontales. She’s started adding real kids from her SS class to her stories. Its great to hear real names like Daniel and Caroline along with all the cartoon characters.

Funny Laura story….Mom, Grace, and Laura were at Lowes Hardware a few weeks ago to buy a Christmas gift for Dad. Grace saw the collection site for the FOX8 Gifts for Kids drive. Mom explained that the toys were given to kids who wouldn’t get any other gifts for Christmas. Grace was very concerned and they immediately made a plan to purchase gifts for the “kids with no toys.” Laura couldn’t quite understand the concept so Mom explained Matthew 25:40 - The King will reply, “I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.” She told Laura that we were getting gifts for Baby Jesus. When we went to Kmart to pick out the gifts Laura spent the whole time looking at a small display of soft baby dolls that played lullabies. We asked her who the baby was for and she would dutifully answer, “Baby Gigi” (her best attempt at Baby Jesus). After giving the “right” answer she would always give a devious smile and then say “me me” and point to herself. She did a pretty good job of handing over her gift at Lowes. Grace picked out a Babysitter Barbie and playdough. She was thrilled to place her gift in the collection site.

Check out the new photos.....

Tuesday, December 11, 2001 at 03:42 PM (EST)

Wednesday, December 05, 2001 at 12:15 PM (CST)

We successfully completed our ushering in of the Christmas season. On Thursday we went to the candle tea in Old Salem. It was great, although a little longer than we had remembered. We went to Venezia’s for supper afterwards. We didn’t get there until 8:45 (very late for us) but the girls were great. The place was almost empty so we let their table manners slide just a bit! On Friday evening we went to the Christmas tree lighting in downtown Winston-Salem. Lexington State Bank’s mascot (a bee) was the girls’ favorite part……go figure. The Oncology group at Brenner’s had their Christmas party on Saturday. There was great food, games, and entertainment. Grace was mistaken for a boy when she walked on the stage to get her gift (she didn’t realize). They gave her a tool kit with a battery-operated drill. She loves it. She’s “fixed” everything in the house.

We went to church on Sunday. It was great! Grace couldn’t have a better Sunday School teacher. Elizabeth had planned for Grace’s return with a party complete with balloons and refreshments. She took great care of our girl (we were pretty particular before Grace’s illness, so you can imagine now). Grace had absolutely no problem separating from us and she seemed so happy to be there. All the kids were really excited to have her in the class. The great experience is definitely an answer to prayer. Laura had no problem being dropped off in her nursery, but she decided that she’d rather go to Grace’s class after we left her.

Grace would have been fine to stay in her class for worship, but Laura wanted her Mama! We took them both into the worship service with us and they were great. We had to leave a bit early as Laura’s diaper leaked in Mom’s lap. Two thumbs up for the new A/V system, which displays the words to the liturgy and songs! It was a lifesaver for us this week. By the way, we went ahead a dressed the girls in their Christmas dresses since we never know what the next day may hold. I must say they looked fantastic.

We went the Hilton family reunion on Sunday night. The girls were a little uhhhhhhh active, but not bad. On Monday, we had a couple of things that we had considered doing, but Grace decided she would rather stay at home. Mom and Dad didn’t push too hard to do otherwise! Grace had her clinic visit yesterday. She got a Pentamidine breathing treatment and her first flu shot (kids have to break the dose in half so she’ll need one more dose in about a month). She was great for both. Mom and Dad got their shots at Harris Teeter after Grace’s clinic visit. She thought this was very funny! Her labs results were good with the exception of her Calcium level. It was a little high so we’ll have to watch her closely until she finishes this round of Accutane (next Tuesday).

Were planning to go to Mocksville tonight for a carriage ride downtown to see the lights.

Candlelighters is an organization that supports families of children with cancer. They publish a great quarterly newsletter with articles on diagnosis, treatment, coping, and survivor issues amongst other things. The spring issue had an article written by Jocelyn Brent, the mother of a three-year-old leukemia patient. Her words rang so true to us. Here’s a portion of what she wrote. If you’d like to read more, check out www.candlelighters.org.

“A crown, of sorts, is placed upon our heads when we enter this world of cancer. A crown for all to see. Tarnished, dinged, bent - yet, it must be worn with grace and dignity. All who know us will see us with it.

Each member of our family had this crown bestowed upon them in the spring of 1995. Our youngest son, Jon, was diagnosed with standard risk leukemia at three years of age. Our older son, Clayton, became the brother of a child with cancer. What a role that was to be! He began this role at six years of age. And, at just seven years into our marriage, my husband Tom and I became the parents of a child with cancer.

Our crown garnered many reactions like... "Oh look at how strong they are wearing that crown." "I know you are wearing that crown, but, can you get that report out this afternoon?" "That's one big crown for a kid, but, let's see if he can behave a little more appropriately." We concern ourselves about its weight, about how it looks on us, about how we look with it, about its appearance, about our appearance, about how we want to take it off. Once it is placed on our heads, so many lives changed.

Yet, when we take a look at this crown, really look, we see jewels. After all, they shine brighter than the tarnish. Each struggle, each angel in our path, each neighbor who has cut a lawn, each repairman who has "forgotten a bill', each anonymous phone card, every lesson we teach, every lesson we learn, the jewels that our crowns are adorned with are its beauty.

Jon relapsed and needed a bone marrow transplant. He needed a bone marrow donor, and his brother was not a match. This meant that Jon's only chance for survival was to find a matched unrelated donor on the bone marrow donor registry. We received a miracle when we were told that there was a perfect match. Jon received his bone marrow transplant in November 1998, on his fathers 40th birthday. After an ongoing struggle with graft vs. host disease which was finally brought under control this past December, we enjoyed our best holiday season ever! Visiting with family and friends had me seeing even more clearly the many jewels we wear on our crowns. No masks, no "immune-compromised" isolation from those we hold dear. Waking up and feeling great, we were finally able to travel, and travel we did.”

“There are so many shining moments of joy we have lived these past years. Of course, there has been struggle beyond anything I could convey. There has been suffering beyond anything I could have fathomed, but, there is such profound joy in our every day. Every path of every life we each have crossed, while wearing our crowns - bear witness to these past days...

We haven't found a way to take our crowns off. They are just there now. Somewhat askew. At times banged up and dingy. So very heavy, so much so that their weight has been unbearable some days...

But brilliant ... brilliant with jewels.”

Well written I thought……

We would like to thank all of you who have added jewels to our crowns. Each member of our family has received so many kindnesses. As we are “re-joining” the world those kind words and deeds have only been multiplied.

It seems so unpredictable when our crowns are the heaviest and seem the most prominent. Often, in the “heat of battle”, we have nearly forgotten them. Now that days should be so much brighter, sometimes our crowns seem heavier, more conspicuous, and more burdensome. I’m not sure if it’s the Christmas season with all of it’s “annualness”, the toil of the many nights with little sleep, or the fact that there’s finally time to stop and reflect. At any rate, we’re thankful that at this moment we have two healthy, and loving little girls.

We just found out that another child, Amber, passed away this fall. We shared a hospital room with Amber and her mom several times. If we were going to have a roommate at Brenner’s, Amber was always our first choice. Amber was diagnosed just a few months after her father died of cancer. Her Mom had such an incredible burden, raising two girls alone – one with cancer – and holding down a full time job. When we get a little overwhelmed, we always say, “If Teresa can do it, surely we can.” As you pray for our family and others like ours, please don’t forget the families who have lost their child this year.

Thanks for checking in…….

Thursday, November 29, 2001 at 12:31 AM (EST)

Hi everyone –

Hope you all had a great holiday. We decided last Wednesday that both Grace and Laura (she got the virus too) were too puny to do Thanksgiving with our families. We didn’t want to share our germs with anyone else. We had our own Thanksgiving dinner with all the trimmings (although we opted for ham instead of turkey). On Friday we went to purchase our Christmas tree. We didn’t realize until we started setting it up that this tree was intended for Rockefeller Center. Dad had to do some strategic trimming and chopping to make it fit in our living room. Trees always look smaller outside! By Saturday the girls were both feeling much better. Mawmaw, Pawpaw and Aunt Teresa came over in the morning. Saturday evening we went to Nana’s for Jacob’s birthday party. We finished up most of our Christmas decorating on Sunday.

We’ve started getting ourselves into the Christmas spirit. We baked Christmas cookies on Monday night. Tuesday night we went to the Festival of Lights at Tanglewood. The girls were thrilled. Last night we went to a family fellowship dinner at out church. We were afraid that the folks there wouldn’t recognize us, but they welcomed us with open arms. It was so nice to be back. Tonight we’re going to the Candle Tea at Old Salem, a restored Moravian village near downtown Winston-Salem. The Candle Tea is an annual Christmas tradition for many Moravians and others living in the Triad. The candles, food, sweet smells, and decorations really get you in the Christmas spirit. On Friday, we’re planning to go to the annual tree lighting at Corpening Plaza in downtown Winston Salem. Saturday is the Christmas party for the cancer kids at Brenners. On Sunday were planning our first time back to Sunday School, so please say a prayer that it will all work out. We still haven’t heard back from Grace’s immunology study, so we’ll have to be very careful putting Grace in a room full of preschoolers. The same goes for Laura, as she would almost certainly pass on anything she picked up to Grace. We’ll just have to monitor the situation and pull them out if anyone seems sick. Hopefully, it will go well. We’re also planning to go to the Hilton (Nana’s dad) family reunion Sunday night. Next Monday we have to choose between the tree lighting/storytelling event at the Clemmons library and the candle trimming at church. We’ll slow down on Tuesday for Grace’s flu shot and a monthly breathing treatment that helps to prevent pneumonia – YUCK.

As you can see we have a lot of plans. We missed so much of the Christmas season last year. We are so thankful that we’re all healthy this year. We don’t want the girls to miss out on one minute of fun.

Thanks for checking in.

Wednesday, November 21, 2001 at 08:50 AM (EST)

Hi everyone –

I guess we’re getting into a weekly update mode. We’re making up for the infrequency with our quantity today!

What at trip! When we left for Disney last week we expected to ride a roller coaster in the park. We just didn’t realize that we would be taking a figurative roller coaster ride as well. I’m going to chronicle our trip as much for our benefit as for yours.

Wednesday – A very nice limo driver greeted us at our door promptly at 7:30 AM. She helped us load our bags and get the car seats placed. Our neighbor Brett (one of Grace’s buddies) was as excited as our girls to see the long stretch limo. The big car fascinated the girls. They were great on the way to Charlotte, but were getting a little restless by the time we got the to airport (about 1-1/2 hours). Flying was definitely the right choice. We made a fairly easy transition from the car, through the airport and to the plane. The girls were very agreeable. Grace showed no more than a mild interest in the take-off and Laura promptly fell asleep. Ahhhhhh…an easy flight. By the time we de-boarded, found the rental car (with the help of a Give Kids the World volunteer) and drove to the Give Kids the World Village we were fairly tired. I’m glad we didn’t try to tackle a theme park the first day. The folks at the Village treated us like royalty. We got a 2-bedroom villa with a kitchen, dining area, living room and 2 baths. We spent the afternoon exploring the Village, which has it’s own ice cream parlor, restaurant, stocked pond with poles and bait, movie theater, arcade, pool and mini water park, train, and much, much more.

Thursday – We spent the day in the Magic Kingdom. Both Grace and Laura loved it. With Grace’s Give Kids the World button we got to move to the front of all the lines! We did – It’s a small world, Dumbo, Peter Pan, Ariel’s Grotto, the flying carpets, the Pooh ride and lots of other stuff. We repeated many of these rides several times. Laura’s favorite was It’s a Small World. She was absolutely fascinated. She kept reaching for the dolls and saying “babies, babies” over and over again. Grace fell in love with the little mermaid. She visited her several times at Ariel’s Grotto. (Nurse Tracy – you’re a dead ringer for the Ariel at Disney. If you donned a red wig you could join the cast members!) We came back to the villa in time for a nap and enjoyed the events there that evening. Santa visits the Village every Thursday night year round. We all had our picture made with Santa and Mrs. Claus. The girls even got to pick out a gift.

Friday – Seaworld. This was great for Grace. She loves fish and sea creatures. We got a picture made feeding the dolphins. This was actually one of Grace’s least favorite parts. She loved the Florida Manatee exhibit. I thought we would never get her away from it. The exhibit was a complete ecosystem including a fish that ate the Manatee’s poop as it was excreted. Grace thought this was very funny!!! Mom and Dad found it to be a little gross. We also viewed turtles, birds, penguins, puffins, seals, and the Shamu show. Mom and Dad voted NOT to sit in the Splash Zone for the show. One of the employees at Seaworld said the nicest thing possible. She said, “I see that one of your girls is wearing a Make-a-wish badge. I’m surprised, you look like you have two perfectly healthy little girls.” It was music to our ears. Friday evening Mom’s Aunt Mary, Cousin Bobby, and his son Austin came over to visit. Laura loved seeing Austin. She’s not been around many other babies. She was fascinated and a little confused. Aunt Mary’s friend and frequent guest book poster, Deborah Johnson and her family met us for supper as well. Grace had a few sniffles during the evening and didn’t sleep well at all on Friday night.

Saturday – Grace woke up feeling pretty crummy. She didn’t want to do anything and she slept on and off most of the day. As the day progressed she started getting a fever that rose to 101.5. We considered taking a 7:50 PM flight back home, but our doc in NC didn’t think that was a good idea. He suggested that we take her to Arnold Palmer Children’s Hospital in Orlando for blood counts and a culture of her Port-a-cath. We grudgingly did this. We had hoped to start taking Grace to things like Sunday school and maybe even preschool after this trip. Realizing that she’s going to be hospitalized for every fever until we get rid of the Port-a-cath has made us wonder if this is a good plan. It is very scaring taking your kid into the unknown territory of a new hospital. The folks at APH were great. I don’t think that anyone else could have done better considering that we were coming in “off the street” and they had no idea of Grace’s history. They were very willing to let us guide them through what tests needed to be done and what drugs given. Since the fever was persistent (it broke Sunday morning) and she was fairly dehydrated we decided to admit her for 23 hours to hydrate her and give a couple of doses of a broad-spectrum antibiotic. By the time the labs were back and we made this decision it was 3:00 AM. She had to be transported to the in-patient center via ambulance. Mom and Dad were a little overwhelmed, but Grace couldn’t have cared less. The folks on the Ped Onc unit were great and Grace slept through much of the experience. A HUGE thanks to Aunt Mary who kept Laura at our villa until we got Grace through the ER and in her room.

Sunday – Mom and Dad are feeling very disappointed. Over the past year we have looked forward to this trip as a turning point in Grace’s recovery. It really meant so much more that just a nice trip to Florida. Mom decided that we just couldn’t let the trip end this way. Sooooooo…Dad convinced the docs to move back the med schedule so we would be done by 4:00 PM. Mom got herself and Laura dressed and drove to the hospital (about a 40 minute drive). Dad drove Laura back to the villa and put her down for an early nap. He took a bath (everyone was thankful) and got ready. As soon as Laura woke up Dad took her back across town (poor Laura) just in time to pick up Grace and Mom. Grace was feeling much better. We made it to the Disney parking lot by 4:30. We got to repeat a couple of the rides and shop for souvenirs. We also stayed for the Spectromagic parade and the fireworks. During the parade we had one of those magical Disney experiences you hear about. On one of the floats was Ariel, the Little Mermaid, waving to the crowd. She looked down at Grace and obviously recognized her from the many visits wearing her special badge. She looked right at Grace and blew her a huge kiss, turning to her as the float continued down its path. Grace was beside herself. Mom and Dad both burst into tears like a couple of nutcases. That one moment saved the trip for us.

Monday – Time to go home. We asked Grace if she wanted us to push our flight out later in the afternoon so we could visit the Animal Kingdom. She decided that she would rather play at the arcade in the village. Later, we made it through the maze at the airport without much trouble. We decided to check some of our baggage on the way home - obviously we were a little more tired than at our arrival! Laura finally gave out on the limo ride home. She cried for a while before finally going to sleep in the car. Our home looked great, and of course Brett was there to meet us in the yard.

Please take advantage of any opportunity to help Make-a-wish or Give Kids the World Village. They do a great job organizing these trips. We’ll surely return to Central Florida, but we’ll never be able to do it in the style in which we’ve become accustomed.

Tuesday, November 13, 2001 at 04:35 PM (EST)

Hello everyone –

We’ve been doing great. Grace and Laura were dropped off at Mawmaw and Pawpaw’s house on Saturday morning so Mom and Dad could do some Christmas shopping. It was good for everyone. The girls had a great time coloring, eating, and jumping in a leaf pile that Pawpaw had raked just for them. Mom and Dad had a good time shopping for the girls (and others) without so much “help.” We were able to finish most of our shopping except for a few odds and ends. It will be nice to enjoy all the holiday festivities without worrying about buying gifts. Now we just have to wrap! On Sunday morning Grace’s first words were, “is it another drop off day?” She couldn’t understand why she and Laura couldn’t spend the morning with Mawmaw and Pawpaw again.

Mom took Grace to a clinic visit this morning. It went well. All of her blood counts looked better than last week. Her bp is good and her weight continues to increase very slowly. We were concerned that we would have to start her back on GCSF, but that’s not the case for now. Dr. Chauvenet said that Grace looked great….words we love to her coming from her doc.

Tomorrow is the big day. We’re flying out of Charlotte at 11:00 for Orlando. We’ll return on Monday afternoon. The girls are excited beyond measure. We can’t wait to be there.

Thanks to those of you that have been praying for Jon Powell. After careful review and comparison to previous scans – the scans made a few days ago look great. The area of concern has always been in the scans – meaning it’s harmless. On the downside – he had extensive emergency dental surgery this weekend. He was released from the hospital on Sunday evening and is doing well.

Take care

Tuesday, November 06, 2001 at 04:31 PM (EST)

Hello everyone –

We had a great weekend. On Saturday Mom went with Nana, Aunt Tammy, and Jacob to a craft show in Thomasville and then on to Seagrove to buy some pottery for Christmas gifts. Everyone had a nice time. Dad got the chance to play “Mr. Mom” with the girls. They all went to Clemmons Mill to buy birdseed, and then to the hardware store to pick up a couple of items. The girls love going to Ace hardware because the owner has a gray cat, Steel, that hangs out near the cashier. Dad picked up a nutritious lunch of happy meals! This parenting deal is a breeze!!! Mawmaw and Pawpaw came by on Sunday evening for a visit. We took them to the Village Soda Shop (our favorite deserted restaurant) for supper.

Grace had a clinic visit today. It went fine. In fact she was in and out in about an hour. Her blood pressure, weight, etc. were good. They wanted to give Grace a flu shot today, but after a quick page to Dr. Driscoll at Duke we decided to wait until after our trip. He said that Grace could experience mild flu symptoms since she still has a suppressed immune system. If the shot was given today, he felt that any symptoms would show up right about the time we were leaving for Florida. Her WBC, platelets and hemoglobin were all lower than last week. It’s everyone’s opinion that the Accutane (she’s halfway through her third round) is suppressing her counts. If her WBC isn’t better next week, we’ll probably have to give a couple of injections of GCSF to boost it a bit.

We’re starting to get geared up for our Disney trip next week. The girls couldn’t be more excited. I don’t know how we’re going to top this trip. Mom is already talking about a whale watching expedition after Christmas! This family is back on the move.

Please continue to pray for Jon Powell. His scans looked great with the exception of the CT. It showed a small ambiguous area that needs to be compared with his last scans that were completed in NYC. The docs aren’t overly concerned, but as a parent it’s very hard to wait out these situations. Pray that the comparison will yield a clear and decisive negative result. Also, please pray that this will happen quickly.

Friday, November 02, 2001 at 11:29 AM (EST)

Hello everyone –

We’ve been having a great week. While at Duke last week, Mom discussed taking Grace back to story time at the Clemmons Library. They said it would be okay since the moms stay with their kids for the entire program. Mom took Grace and Laura on Wednesday morning. It’s the first time they’ve been back since diagnosis. Grace was so excited. She had a great time and was very proud of herself for participating in the singing, dancing, and craft time. Laura had a good time too, although she wasn’t very interested in making her craft. Grace made if for her – such a good big sister. They were completely out of control with excitement about trick-or-treating. It had less to do with the candy, as it had to do with the costumes, the other kids, and the decorations. The girls made three jack-o-lanterns on Tuesday night and were thrilled to light them up. After all four of us made the rounds at our end of the street, we all came back to our house to pass out candy. Grace put the candy in each kid’s bag. This was definitely a “big girl” job.

Yesterday morning Nana came by to watch the girls while Mom went to the salon. Afterwards, they all went to a craft show. Grace and Laura had good time at the show, but they really enjoyed picking up acorns under a big oak tree outside. Grace has decided that this will be our Christmas gift to the squirrels since we don’t have an oak tree. Grace asked Mom to dispose of the jack-o-lanterns during her nap because she didn’t want to see them go….even then we had to promise to put them in the woods where the squirrels, birds, and chipmunks could eat them.

Darla is coming by today and the girls are going to take her for a picnic at Tanglewood park. Grace’s platelet count was just high enough on Tuesday that we’ve decided to let her play on the playground equipment. She’s going to be thrilled!

We’re still putting together our weekend plans. We’re probably going to relax a little.

Please keep Jon Powell and his family in your prayers. He had his scans repeated yesterday at Duke. No matter how good you feel about things, it is always such a stressful time when major test results are outstanding.

Have a good weekend.

Tuesday, October 30, 2001 at 01:12 PM (CST)

I seems that we’re getting pretty slack about updating the website lately. That must mean there’s little to report – a good sign. We had a great weekend. We had a birthday party for Mawmaw on Saturday. Everyone was able to attend except for Aunt Teresa. It is her first year working in an elementary school and it seems she’s going to spend much of it with a virus! Grace had such a good time that she fell apart in tears when everyone had to leave. We went to Nana’s for Uncle Wendell’s birthday party on Sunday. We had a great time there as well. Jacob proudly presented Grace and Laura with a pumpkin that he had grown. They were very impressed.

The girls are very excited about Halloween. They’re both candy kinds of girls. Laura knows where we’ve stored our Halloween candy. She goes to the foyer closet doors every morning and starts pointing to the spot behind the door where the coveted candy basket resides. Then she opens her mouth and starts pointing to it. It’s just too cute to resist. Laura has started picking up many new words, but she has also developed an elaborate sign language system. Grace can interpret every motion.

Grace had a clinic visit today. They said she looked great! All of her blood levels looked good with the exception of a couple of liver enzymes. They have been fluctuating ever since her transplant. It looks like her WBC is going to be okay without GCSF injections!!!! Also, her platelets were at their highest level un-transfused since early June. Dad spoke to Dr. Driscoll yesterday. He felt that Grace was doing very well. He agreed that the immunology study should have been started last week while Grace was at Duke. He’s arranged to have the blood drawn at Brenner and sent to Duke next week. He sounded hopeful that the results would be good based on her current IGG level.

Have a Happy Halloween. All treats and no tricks!!!!!!!!!!!!!!!

Thursday, October 25, 2001 at 12:13 PM (CDT)

Things have been going smoothly for us this week. Mom took Grace to Duke yesterday. They left at 7am and returned at 6pm so it was a long day for everyone. Thanks so much to Suzanne for joining us. It would have been much harder without an extra set of hands. Grace’s standard blood work looked great. We are going to discontinue her GCSF (the drug that helps boost her WBC) and she how she does without it. We have the final results of the pulmonary function test and the initial result from the echocardiogram – both look fine. They ran some other blood work that we expect to hear from today. We were very disappointed that we didn’t get to meet with Dr. Driscoll while we were in Durham. That was the main reason we went. He is the attending for the inpatients this week and he couldn’t get away. They also choose not to run an immunology study (our other main reason for coming to Durham), but since we didn’t meet with Dr. Driscoll we’re not really sure why. I other words the day was pretty frustrating and we’re not planning to go back to Duke unless we run across some unusual complications.

Mom and Grace got a chance to visit 5200. They wanted to deliver some goodies to the nurses that took such good care of Grace while she was inpatient. It was more difficult for Mom than she thought it would be, but it also provided a sense of closure that the transplant was behind us all. Grace remembered exactly where her room was and the rooms of some of her buddies. She also made a few comments that let us know that she did remember just how bad some of the days were. She seemed to have a sense of closure as well. She spoke a lot about all the fun things we can do now and that were never coming back. Before leaving during Durham, everyone stopped by to see Mrs. Overcash, our neighbor from the vacation house, for a brief visit. It was nice to see her. Grace even said that she missed her room at the vacation house and our neighbors there, but she was glad to be home.

We’re planning to have a birthday get-together for Maw Maw at our house on Saturday. Nana is planning a get-together for Uncle Wendell’s birthday/Halloween on Sunday. It will be nice to see everyone.

Thanks for all your prayers. Please continue to pray that Grace will strengthen every day and that she won’t have to go back on the GCSF injections.

FYI – A boy from the Neuroblastoma listserv that we monitor will be featured on a TV special titled Brave Volunteers. He’s one of three kids that will be highlighted. I think the show will follow his family from diagnosis through much of his treatment. I’ve heard it’s great. It will be shown Saturday at 6:00 PM on the Discovery Health Channel (not regular Discovery). I think that’s channel 62 for those Davie County folks with digital cable.

Monday, October 22, 2001 at 1:21 PM (EDT)

Has it been over a week since we’ve updated? Time flies when you’re having fun!!!

This is the first time in over two years (I think) that Dad’s been off work for a whole week that was used for vacation and not for medical procedures. Boy, did it feel good. We spent the first few days working around the house. We have now successfully put away all our stuff from Durham and can now park the van in the garage!!! We did a finger stick at home on Monday and Dad rushed it to the hospital. It worked fine and all the labs looked good. We headed for the beach on Tuesday and returned Saturday afternoon. We all had a fantastic time. The weather was beautiful. The girls both love spending time on the beach and we did a lot of that. Laura wasn’t afraid in the least. She ran straight for the water and we could hardly keep her out of it. The beach was wonderful PT for Grace. She spent a lot of time walking and bending over to pick up shells (she has been struggling to bend over from a standing position and pick up items off the floor/ground). The improvements have carried over now that we’re home.

We went to the Ripley’s Aquarium at Broadway at the Beach on Wednesday. Grace loved it. She had been once before. It’s a very open facility and it was nearly deserted that evening (yeah). We also took a boat ride on the intercoastal waterway and strolled around Barefoot Landing. Many of the restaurants in Barefoot Landing have outdoor dining available and we took advantage of that as well. It turned out to be the ideal vacation for those of us germ-a-phobes! Thanks so much to everyone that offered your condos/homes at the beach. Grace really wanted to stay at our “regular” place that we always go to. It was really nice to see the ocean from our living room window and run right out to the beach whenever we felt like it.

It has been very nice for Grace to be completely line-free. The girls love to play together without the worry of pulling out a line. Mom and Dad love it too!

We’re tentatively planning to go to Orlando for our MAW on November 14 – 19. We’ll fill you in on the details as they become available.

Hannah, who we mentioned in our last update, is back in Orange County, CA and is doing okay. She’s been able to visit with many of her family and friends.

Grace is scheduled to go to Duke on Wednesday for her “100” day workup. Hopefully, she will get to see some of her friends while she’s there.

Got to go for now……Thanks for checking in.

Friday, October 12, 2001 at 04:10 PM (EDT)

Hello everyone –

We’ve made it through the week with no major catastrophes. Grace has felt well this week. The Accutane has taken a toll on her skin, causing it to be dry, flaky and tender, but nothing unmanageable. We repeated her lab work today. Her platelets are pretty low, but not low enough for a transfusion. If they’re worse on Monday, we’ll likely transfuse since we’re planning to go to the beach on Tuesday. We feel that the Accutane is negatively impacting both Grace’s hemoglobin and platelets. We’ve heard of this from other parents and it’s listed as a side effect on the drug information.

Dad will be on furlough next week. We plan to finally finish unpacking from our move back home (we look forward to parking in the garage again) and in general catch up on things that have been left undone for a year or more. We also plan to go to Cherry Grove for a couple of days.

Please remember Hannah Chade in your prayers. She was admitted to Duke’s PBMT unit a few weeks before Grace’s discharge. It appears that her transplant was unsuccessful. She will be flown back to Orange County, CA within the next day. While her parents are praying for a miracle, the doctors don’t expect her to live more than a month. Please pray that the lifeflight will be uneventful and that Hannah will enjoy her “homecoming” (she’ll still require hospitalization) with family, friends, and her pets.

An update on some other kids you’ve prayed for. Both Evan and Andrew who had transplants before Grace and struggled for different reasons are home (Evan to Statesville and Andrew to Alabama) and doing well. Evan is back in Durham temporarily to have his central line removed and replaced with a port-a-cath. There has been a rash of line infections – it seems that all of Grace’s buddies have had there’s pulled within the past few weeks!

Thanks for checking in…..

Tuesday, October 09, 2001 at 03:01 PM (EDT)

Good afternoon –

It’s a day of good news. The initial result of Grace’s bone marrow aspirate was faxed from the BIS lab in LA – 0 cells per million!!!!! The clonogenic assay (attempt to grow NB cells in a petri dish) will not be complete for a few more days, but based on the initial result it would be unusual to show an activity. Now that we have all the results back, we can breath freely for the next 3 months. Grace has felt great for the past few days. She went to the clinic today and checked out great. Her blood counts and chemistries all looked good. Her calcium level is climbing very slowly and we’re very hopeful that it won’t reach the point of concern before this round of Accutane is complete (next Tuesday).

It has been so nice to be back at Brenner. It really is like coming home. Everyone has been so nice to all of us. They are so quick to adapt their normal procedure to whatever we need/want. They’ve been great about “rolling with the punches” as Grace’s needs have changed since we’ve been home. Brenner seems to be just the right size to have all the services and specialists that are needed without being so large that you get lost in a shuffle of quickly changing priorities.

Speaking of getting lost in the shuffle, we often forget to mention how Laura is doing. In a word – great. She’s such a joy to be around. She loves having everyone around her in her own house. We really look forward to taking her to the beach next week (please pray that our trip works out). If anyone deserves some new and fun experiences it’s that little girl.

Thanks for checking in. We’ll try to keep the good news coming.

Monday, October 08, 2001 at 05:03 PM (EDT)

Happy Columbus Day –

We had a great weekend. We went to the Apple Festival in Wilkesboro on Saturday. We all had a good time, and bought several Christmas gifts as a bonus. On Sunday we went to Mawmaw and Pawpaw’s for lunch to visit Dad’s Aunt and Uncle from Florida. Unfortunately, Aunt Teresa was sick so she stayed in Charlotte and Uncle Mark and Aunt Rene had the sniffles so they waited until we had left to come by. Grace and Laura were disappointed that they missed everyone.

Grace had her first GCSF injection in months on Sunday night. It went pretty smoothly. She seemed to take it a little easier than she used to. Since we’re only giving it every 2-3 days we hope she’ll forget about it between shots. Grace has a clinic visit tomorrow to de-access and re-access her port-a-cath (this must be done every 7 days) and to draw labs. We’re pretty confident that she won’t need any blood products. She’ll finish her antibiotics next Tuesday. After that we hope she’ll be de-accessed for quite a while.

Please pray that this round of Accutane will go more smoothly. She’ll be halfway done tomorrow and so far everything’s been fine. We’ll know more after the blood work tomorrow. If we don’t have any problems, were planning to go to the beach next week. We’ll also try to plan a date in mid-November for our Disneyworld trip.

Please say a special prayer for Hannah – a precious 2-year-old from California. She was admitted to the BMT unit a couple of weeks prior to Grace’s discharge. She’s 60 days post transplant and has not engrafted. Her leukemia is also back with a vengeance. Her parents are making very difficult choices today concerning continuing her treatment.

Friday, October 05, 2001 at 12:48 AM (EDT)

Good news!

1. Grace is being discharged today
2. Both the bone scan and CT scan were negative for NB
3. We don’t have to be back to clinic until Tuesday

We got a small scare this morning, as it appeared that Grace’s hemoglobin had dropped significantly. She just didn’t seem excessively anemic to us so we requested that that CBC be repeated. The second time the hemoglobin came back fine. This did give us a chance to learn to do finger sticks…Yuck. It went pretty smoothly, so we hope to start doing finger sticks at home when labs are required. Our only concern is with clotting off the blood while transporting it to the hospital (this is more likely with peripheral blood than with blood drawn from a port or line).

We’re hoping to head to Wilkesboro for the Apple Festival on Saturday if the weather holds. Dad’s Uncle Johnny and Aunt Fran are coming up from Florida this weekend. Maw Maw is planning a get-together on Sunday afternoon with everyone.

We should hear from the bone marrow aspirate next week. Then we can relax a little for another 3 months. Thanks for all your prayers and support.

Thursday, October 04, 2001 at 05:15 PM (EDT)

Good afternoon –

Grace had a good day today. She had her CT scan and bone scan done today. She was great for both of them. It was the first bone scan she’s done without anesthesia. She ended up falling asleep for both.

We’re going home this evening on a pass. If all goes well Grace should be discharged tomorrow. She will keep her port accessed and we’ll give her IV antibiotics at home (either once a day or three times a day – we’re still working that out).

That’s all the news for today. Take care.

Wednesday, October 03, 2001 at 3:57 PM (CDT)

Good afternoon –

Grace had her bone marrow aspirate done yesterday. It went fine. While she was under the anesthesia they also removed her central line. We were kind of sad to see it go. It had become such a part of Grace, and while it was inconvenient at times, the line has saved Grace many painful procedures and many hours in the clinic. In true Grace style the removal was much more difficult than anticipated. She ended up being under anesthesia for about 1-1/2 hours. She was pretty groggy and cranky yesterday evening and she woke up this morning feeling a little out-of-sorts as well. She seems to be feeling better as the day progresses.

During the night part of the tubing that leads from her port to the meds came unhooked. It allowed blood to clot in the line and port-a-cath. Grace’s nurse was able to get it limping along for the night. The port completely clotted off today and they had to de-access and re-access her port. Then they were able to force a couple of CC’s of TPA (a clot busting drug) in her port. They’re letting that sit for a couple of hours and then hopefully everything will be okay.

They couldn’t work in any scans today, which is a good thing. No one was really up for it. It’s kind of been a day of frustrations. We’re still hoping to be discharged on Friday. Please say a little prayer – we’re not up for another weekend in the Brenner B&B.

We made a contact with another family from Brenner who are getting ready for a cord blood stem cell transplant at Duke. Samantha (Sam) is 5 and has an aggressive type of ALL. They are concerned about the logistical things like housing, what to bring, and scheduling. Of course they’re very concerned about their little girl. Please keep them in your prayers.

Tuesday, October 02, 2001 at 12:02 PM (CDT)

Well our intuition was correct…..Grace’s line infection has come back. The culture was positive this morning. She will have her line removed (minor surgical procedure) while she’s having the bone marrow aspirate done at 1:00 today. I guess it’s a kind-of two-for-one deal. We would be ready to be discharged this afternoon EXCEPT the docs are being very conservative with her Port-a-cath now that it is Grace’s only venous access. We will access it during the surgery and draw cultures from the Port. Even if it’s negative they want to do IV antibiotics through the Port for 10-14 days. That’s kind of a pain, but it is better than loosing her Port. Losing the external lines has plusses and minuses. We’ll lose the ability to easily and painlessly draw blood and administer G-CSF. But – when the Port-a-cath antibiotics are complete Grace will be able to bath normally, we don’t have to do dressing changes, and Grace and Laura can play much more freely without the fear of Laura pulling out Grace’s line.

Grace will be inpatient for a couple of more days due to the whole Port deal. That means we’ll miss our 100-day stuff at Duke tomorrow. We’re going to schedule Grace’s scans at Brenner while she’s inpatient. At least we’ll feel that were doing something productive while we’re in. That way all we’ll have to schedule at Duke are labs, and exam, a pulmonary function test, and an echocardiogram. The scans are very difficult to schedule at Duke.

It looks like we’ll be putting off our beach trip for a couple of weeks…..but we are going!!!

Sorry if this is sketchy – there’s smoke pouring off of my keyboard.

Monday, October 01, 2001 at 05:15 PM (EDT)

Very quick update –

We had a great weekend. We all went to the party at Tanglewood on Saturday for the Hem/Onc kids at Brenner. It was a lot of fun for all of us. We got to catch up with a lot of folks we hadn’t seen in a while. We were invited to our Sunday School picnic Sunday for lunch at Mallard Lake. We would have loved to go, but it fell right in the middle of the girls’ naptimes. Interrupting that can get ugly! We were able to go to the Dixie Classic Fair for a few hours Sunday evening. Grace and Laura loved it!!!

All good things must come to an end…….Grace woke up with fever this morning. She’s been admitted to draw cultures and start her on antibiotics. If these cultures come back positive this time, we’ll have to pull Grace’s line. We’re hoping to get a few more weeks use out of it before it is pulled, but we’ll see. She’s going to have a bone marrow aspirate tomorrow at 1:00 as this was scheduled for this week anyway. We’re hoping to be discharged (line or no line) on Tuesday evening or very early Wednesday morning. Grace has her 100-day work up at Duke all day Wednesday. It’s going to be a very full day.

Please begin to pray that Grace will still show no evidence of disease (NED status). The critical tests are the bone marrow aspirate and two scans that will be run at Duke on Wednesday (Bone scan and CAT scan).

Thanks for checking in.

Thursday, September 27, 2001 at 05:07 PM (EDT)

I’m almost afraid to say it. We’ve made it through nearly a whole week with no visits to the clinic. Dad dropped off labs at Brenner this morning. Everything still looks good. Grace’s platelet count had actually increased from 26 on Monday to 30 today. All her electrolytes are right where they should be. She really seems to be feeling more like herself. We’ve recently found out that hypercalciumia causes feelings of malaise, weakness, headaches, and mood swings. That explains a lot.

Monday was kind-of a rough day, but things have been steadily improving since then. We’re doing normal things like taking walks around the neighborhood, sitting down and eating real meals together, and watching Grace and Laura alternately entertain and frustrate each other. It has been nice. Our good friend Suzanne came over yesterday morning. The girls took her to an elaborate picnic of happy meals and orange drinks at Tanglewood Park. They had a great time.

Next week is very up-in-the-air. Grace is due for her 100-day lab work and scans. We’re not sure if that will happen next week or the next. To add to the confusion, Dad has to take a furlough from work one of the next three weeks. We’re working hard to fit in a beach trip during Dad’s furlough. Both of the girls will love it!!! We still have hopes of going to Disney in November. The last year has been really crummy for everyone and we’re doing our best to make up for lost time.

We hope to attend Brenner’s fall get together for their cancer kids this Saturday. It’s going to be at Tanglewood (how convenient for us). Since all the events will be outside we feel fairly comfortable with letting Grace go. If there is any group of people that are aware of not sharing germs, it’s this crowd! Saturday is an important day for another reason. September 29 is the day that we were innocently sitting in Dr. Trowel’s (Grace and Laura’s pediatrician) office when she told us that Grace had an orange-sized tumor in her abdomen and that it was probably either Neuroblastoma or a Wilm’s Tumor.

It all seems like a bad dream - our devastation and denial, the rushed trip across town to Brenner, the agonizing wait in the ER, and the days of tests, tests, tests, tests, and finally a surgery to prove what we didn’t want to know – Grace had Neuroblastoma. It seems like such a long time ago. We were all very different people. I’m not sure I even remember those people – much more innocent, much more “together”, and completely unaware of the suffering of so many children. Looking back on it, Grace seems so small and of course Laura was so tiny and helpless. For as much as we’ve been angry with God, questioned Him, begged Him to change things – it is only through His grace and mercy that we’ve made it this far. There is such a clear starting point to this journey, yet the ending point couldn’t be more elusive. There seems to always be one more scare, one more test, one more irregularity, and one more scan that could define the rest of our lives.

With that being said, I wish that a year ago we could have looked ahead to today. We had no idea if Grace would make it through the many, many hurdles that must be crossed to reach a cure. The remaining obstacles seem very doable when we take the time to look back. We thank God that at each fork in the road, Grace has ultimately taking the best path.

Thanks for keeping us in your prayers. It has been so comforting to know that you all are lifting Grace and Laura up when we have been too angry, weary, or frustrated to do it ourselves. You can never fully understand what your support of our girls has meant.

Take care!

Monday, September 24, 2001 at 03:17 PM (CDT)

Good afternoon –

We all had a great weekend. We were able to make it to the Vance’s cabin in Blowing Rock Friday night. It was even nicer than we remembered. Laura slept the whole way up and Grace talked non-stop. On Saturday, we went to Grandfather Mountain. We saw the animals and fed the bears peanuts and dried apples (this was the girls’ favorite part). After a picnic lunch we walked over the “mile high swinging bridge.” Dad and Grace enjoyed it, but Mom didn’t have as much fun. Laura tried to throw herself from the bridge the whole way across and back. Evidently, we have a future bungee jumper in the family. We also went to the candy barrel at Mast General Store in Valle Crucis, made a quick stop at Shoppes on the Parkway, had take out from the Blowing Rock Café, and played on Tom’s restored real-life caboose.

We spent much of the day on Sunday just relaxing at the cabin. We even caught several glimpses of deer from the porch. For the highlight of the day Dad drove everyone around the property in the Pug (see new pictures). We didn’t get home until 8:30 Sunday night. We just didn’t want to leave. Thanks so much to Tom and Carol for your hospitality.

We’re already planning our next trip. If Grace continues to stabilize we hope to go to the beach in October.

We drew labs today. Everything was in good shape. Let pray for an easy week.

Friday, September 21, 2001 at 03:03 PM (EDT)

Helloooo Highcountry…….

That’s right – Grace was discharged around lunchtime today. Mom’s frantically packing for the mountains while Mawmaw and Pawpaw watch the girls. We’re hoping to leave by 7 PM getting us to Blowing Rock by 9 PM tonight. Then a weekend of fun. We hope to visit Grandfather Mountain tomorrow. Grace is definitely looking forward to a ride on the “Pug.” She says that Mom and Laura are going to ride in the back. We’ll see…..

Grace got a RBC transfusion during the night. She was very lethargic during her pass last night. We got the resident to run a CBC last night when we got back – Grace’s hemoglobin was 6.6. She’s feeling much better today with hemoglobin of 10.5! It has been just short of 4 weeks since Grace’s last RBC transfusion so were hoping this may be the last one. Everything else is looking good too – all her electrolytes are normal, the cultures still show no bacteria, her appetite is fair, and her bp is holding steady. Grace’s nurse taught us to take manual blood pressures this morning. We have to take her bp twice a day and call the doc if it’s over 120/80. We have a prescription for bp medication, but we only have to give it if the docs tell us.

We’re looking forward to a nice weekend. We hope yours is great as well.

Thursday, September 20, 2001 at 03:50 PM (EDT)

Good afternoon –

Things are looking a little better. Grace’s electrolytes have continued to normalize. The docs took her off of all the supplements, hydration and diuretics this morning. They hope that her labs will slowly normalize on their own now if we just “leave her alone.” Everyone seems to be of the opinion that taking Megace (appetite stimulant) and Accutane (NB relapse preventative) together caused the imbalances. We will have to get along without the Megace, but we will start the Accutane back as scheduled in a couple of weeks. We will closely monitor her blood levels at that time. There is a drug available that is very effective at reducing blood calcium levels, but it comes at a price. It causes fever and flu-like symptoms. There’s a decent chance she’ll be okay without it. We’ll cross that bridge when we get there.

Grace’s blood pressure is still an issue so they’re leaving her on a bp med for a few more days/weeks. Hopefully, it too will clear up on it’s own once she’s on a lot fewer drugs. Grace started having diarrhea during the night. She’s been tested for rotavirus and it is negative. It could be coming from some other virus…..or just because of all the changes in drugs, hydration, etc.

On a good note – Grace’s CBC looks good. We’re going to skip her dose of GCSF tonight and see how she does. If her WBC drops we’ll start giving GCSF every three days (she’s on an every-other-day schedule now) or discontinue it all together if her WBC holds. Also, the initial line cultures are negative. We’ll know for sure by Monday if the culture is completely clear of bacteria.

We hope to be discharged tomorrow. We’ll check out all her labs once more tonight and in the morning. If she needs blood or platelets we’ll do that in the AM. We’ll also give GCSF in the AM if necessary. She’s going home on a four hour pass (we will probably stretch it a little) today. We still haven’t given up hope of going to Blowing Rock this weekend. If we do go we’ll have to just throw in our “whiteys” and go!!!

Whew….it makes me tired to just read all that. Thanks so much to the many of you who have hung in there and continued to pour out so much support and prayer on Grace and the rest of us. I know we must be getting a little exhausting to follow and we really appreciate you for not giving up on us. Grace is going to beat this thing if it kills the rest of us!!!

Take care……..

Wednesday, September 19, 2001 at 05:04 PM (EDT)

Hi everyone –

Grace is doing okay. The consensus between oncology, endocrinology, and nephrology right now is that Grace’s electrolyte problems have come from the two drugs that we’ve discontinued. They have been treating her symptoms by flushing out the excess calcium and supplementing extra phosphorus and potassium. This is starting to get things closer to a proper balance. We’re currently waiting for these measures to continue to improve the situation. Everything is related and we’re trying to battle fluid balance, blood pressure, diet, appetite, medications, and electrolyte levels. We’re also trying to limit blood transfusions to challenge Grace’s marrow, while not making her so anemic that she feels miserable. Grace has a renal ultrasound today that showed normal kidney function.

It has been a pretty tough admission for Grace. With three teams of docs working with Grace, there’s constantly someone in the room and some type of exam or procedure going on. We’re definitely “getting our money’s worth” this time. She also had a scheduled breathing treatment today that prevents a certain type of pneumonia. We really have no idea when Grace will go home or even what the discharge criteria are. This is definitely no where near the sickest that Grace has ever been, but it is the most mysterious.

We’ll fill you in as we know more.

Grace got her last dose of antibiotic last night. They drew line cultures today and will repeat them tomorrow. We hope that this will indicate that the infection has cleared.

Monday, September 17, 2001 at 10:12 PM (EDT)

It has been a very long day. Mom took Grace to the clinic for what we had planned to be a routine check-up and Grace ended up being admitted to Brenners. All of her major counts were ok, just barely sqeaking by without any transfusions. However, her chemistries and blood pressure were awful. Her blood pressure approached its all time high of 200/100. Her calcium levels were hugely elevated and her phosphorus and potassium were decreased. There are numerous guesses as to the problem but no definite diagnosis. Dr. Chauvenet put in calls to Duke to talk to Dr. Driscoll who was baffled as well. So. the pediatric nephrology team and endocrinology team was called to consult. It seems that the high levels of calcium could be raising the bp. While Grace's parathyroid was suspect it is fine per tests run today. The most likely guess is that Grace's high calcium diet combined with the Megace and the Accutane are causing the problem. She has had to stop her first round of Accutane 1 day short of the first round because of these complications. We are very concerned about the potential for not being able to complete Accutane therapy as it combats minimal residual disease (neuroblastoma) in some kids. Also it is likely that we are beginning to see some of the damage done to Grace's kidneys during the last year manifesting itself as potassium and phosphorus leak from them. Right now the plan is to stop the Megace, (there goes the appetite,) and Accutane. Then, give potassium and phosphorus supplements as well as more diuretics and blood pressure meds. We are so disappointed that we couldn't avoid the blood pressure meds, but many kids need them post transplant. It is disturbing to give it to a 3 year old though. In addition, there is a very slight possibility, emphasis on very slight, that the increased calcium could be coming from a metastisis of neuroblastoma to the hard bone. Just hearing the possibility has made us physically ill. In addition, we will hear late this week if Grace's line infection has cleared and if not, she will lose them. We are really concerned because she still needs them for meds,transfusions and now possibly TPN again if her appetite disappears. If she loses them, she may face getting a new set.

Needless to say, we have had enough. Grace's mental health is awful and ours isn't all that far behind. Relapse is a reality that we face and we just want Grace to recover from transplant so that she can enjoy some time with minimal medical treatment, in that eventuality. In addition, Laura has had to sacrifice so much. We know that we are so fortunate to have had grandparents available to care for her, but we want to care for her now. We miss her more that words can say and we so want to take her places and show her things. We had hoped to go to the one place that Grace has been dreaming of..the Vance's mountain house, this weekend but best guesses have us in-patient for at least a week. (How can we have a target discharge with no official diagnosis?) We are so hoping that we can still go...we really need the time as a family.

Thank you for listening to us vent. Please keep us in your prayers that we will be able to find the strength to face yet another set back. Please also pray that Grace will feel like herself soon, she feels pretty bad. Please also pray that the doctors have the wisdom to find out what is wrong and treat the problem. Please pray that she will not lose her lines and that the infection will be clear. That is a BIG list of prayer requests...thanks so much for remembering us and for checking on us!

Friday, September 14, 2001 at 03:51 PM (EDT)

Hey everyone –

Grace is doing well. She was discharged from Brenner yesterday afternoon. Keeping up with all of Grace’s meds is a little challenging, but we’re getting the hang of it. She is thrilled to be home. Dad dropped off labs this morning and they looked good - no clinic visit today. We have to repeat labs on Monday and go in for a visit. Hopefully, Grace will not need any blood products then either.

We’re planning a birthday get together for Aunt Teresa at Mawmaw and Pawpaw’s house on Saturday. Otherwise, we don’t have any plans for the weekend. We’ve made plans to stay at “the mountain house” in Blowing Rock next weekend. We hope that Grace will be up to a weekend away from home.

Hope you have a great weekend.

Wednesday, September 12, 2001 at 04:07 PM (EDT)

Hey everyone –

Grace is doing great with the exception of “hospitalitis,” a disease caused by having a fairly healthy pre-schooler contained in an 8’x10’ room for days on end. Thankfully, Grace got a pass yesterday afternoon and she’ll be able to come home on a pass this afternoon as well. She should be discharged tomorrow around lunchtime. We’ll continue IV antibiotics at home for another 5 – 10 days. Her blood counts continue to fall, but at a slower rate. Dr. Chauvenet feels that Grace is continuing to make more and more RBC and platelets. He feels that she will need a few more transfusion, but they will come to an end! He hopes to wean Grace to GCSF every third day in another week or two. Grace has discontinued her diuretic and her blood pressure has remained slightly elevated but stable.

We had hoped to have Grace’s bone marrow aspiration done while she was inpatient. Unfortunately, yesterday’s terrorist activities and the halt to air travel has prevented that. A sample of the bone marrow has to be in California in a limited number of hours. Dr. C wasn’t confident that he could get the sample to the BIS lab in CA in time. We certainly don’t want to repeat this procedure unnecessarily. This is just a tiny inconvenience in comparison to the many families who have been affected by this tragedy. Please join us in praying for the families affected and for the best possible resolution to yesterday’s events.

We’re still planning a get together on Saturday for Aunt Teresa’s birthday. Thanks for checking in. Have a great day!

Monday, September 10, 2001 at 04:49 PM (CDT)

Very quick update –

Grace has felt fine since she was admitted for fever on Saturday night. They started high doses of IV antibiotics at that time. The antibiotics must be working because she hasn’t run fever since early Sunday morning. We got the initial results from the line culture today. She does have a central line infection. We will find out tomorrow or Wednesday the exact bacteria causing the infection and the best antibiotic to target those bacteria. Dr. Chauvenet wants to keep Grace inpatient for a couple of more days once the targeted antibiotic is started just to make sure that Grace responds well. Hopefully she’ll be discharged on Thursday or Friday and we’ll continue the same antibiotics at home. We hope this is just a bump in the road. We do have to access Grace’s port-a-cath tonight (YUCK) to culture it and run antibiotics through it just to be safe.

Laura is doing great. She had her one-year check up today (a little late). She’s as healthy as can be!

Thanks for checking in……

Sunday, September 08, 2001 at 12:51 AM (CDT)

Quick update...Grace was admitted to Brenners tonight around 11:30 after spiking a fever this evening. It is most likely due to an infection in her central line. Line infections can become serious if left untreated but generally clear up easily with antibiotics. Grace's lines have been cultured and we will know over the next few days which strain of bacteria (if any) is present. That will determine which antibiotic to use for treatment. We are hopeful that the fever is due to something easily treated such as a line infection and of course are concerned that the fever could be a result of something else although I couldn't hazard a guess as to what that would be!

Grace had a really great day. Probably the best since transplant. We did make it to the festival at Old Salem and both girls had a ball. It was a beautiful day and the crowd was small. We got to see several folks from our church and that was a treat. After dinner, Mom thought that Grace felt warm, but her temp was normal. Later after Dad put her to bed, he thought that she felt warmer and the next temp check showed a 102 fever. Because she has felt so good, (we had just commented at dinner on how she seemed so much like herself today) we don't feel like she has picked up a virus or anything. Dad took Grace in after Mom frantically packed a bag. We used to keep an emergency bag in the car during chemo, but who knew we would need one again? The biggest ordeal was packing all the snacks that Grace likes now that she is on the appetite stimulant! Most likely, Grace will be in-patient for a few days. We are really nervous about all the germ contact on the general peds floor. Please pray that she will not pick up a virus while there. Please also pray for a quick and easy stay...Grace was SO upset about haveing to return to the hospital. She was just pitiful. But Dad reports that she is settling in o.k.

Thanks for checking in and for all of your prayers. We will update as we find out what is wrong this time.

Friday, September 07, 2001 at 03:48 PM (EDT)

Grace has been doing well. She didn’t have any unexpected problems requiring her to go in for a clinic visit prior to today. Everything looked good today. Her weight is hanging in there, her BP is still a little elevated, but no one is alarmed, and her counts looked good. Her WBC was 17.5, her hemoglobin was 10.5 and her platelets 13. Her threshold for platelets is 10, but they went ahead and transfused since Grace was already there and would have most likely dropped below her threshold in one or two days. We’re really trying to limit her clinic visits to twice a week. That has been very freeing!!! Dr. Wofford reduced Grace’s GCSF to every other day. This will probably cause a temporary drop in Grace’s WBC, but it could actually improve her platelet count.

We’re desperately seeking activities for this weekend. We’ve thinking about going to an outdoor art and music festival at Old Salem on Saturday and an outdoor concert at Miller Park on Sunday. These events may be pushing the limits of Grace’s isolation a little bit, but we feel it’s important that she get out of the house. She’s started telling us that she’s bored….we think it’s a good sign! Outside stuff is pretty much okay at this point, but if the crowds are too large and we can’t find our own little space, we’ll just leave.

By the way, Grace is taking her Accutane like a champ. She now takes a total of 12 pills a day. We’re hoping to reduce that number over the coming weeks. Hopefully, she’ll be off of everything except Accutane in another month.

Thanks for checking in.

Tuesday, September 04, 2001 at 03:54 PM (EDT)

Hello everyone –

We’ve had a great few days. It has been a little overwhelming trying to get everything unpacked and returning to the old routine. They say that there are good kinds of stress and bad kinds of stress. This is definitely a good kind!!!

The Cecil’s – Gams, Nana, Uncle Wendell, Aunt Tammy and Jacob all came over on Saturday for homemade ice cream. We had a great time. We tried to premiere our ABMT videos to little avail. First we had to make a quick run to Radio Shack to replace a cord that must have been left behind at the vacation house. Then the color was all out of whack. Oh well, we lived through it one time….maybe it’s best to leave it as a memory. The Cain’s – Mawmaw, Pawpaw, Uncle Mark, Aunt Rene, Aunt Teresa, Benjamin, and Hannah all came over on Monday for a Labor Day cookout. Poor Benjamin…..all those girls……playing Calico Critters just isn’t a nine-year-old boy’s idea of fun!

Grace had a clinic visit today. All was well. Dr. Wofford was very pleased with Grace. Her blood counts were great…no transfusions again today. Her chemistries were still elevated, but they looked better than Friday’s numbers. Grace has another clinic visit scheduled for Friday. If her WBC still looks good we hope to decrease her G-CSF dosage.

Grace starts another oral med tomorrow – Accutane. It is a drug that’s used for severe acne, but high doses have been found to significantly reduce the relapse of high risk Neuroblastoma. It means 6 more capsules daily, alternating two weeks on and two weeks off. Please pray that we can get the capsules down and that Grace tolerates it well. It has some side effects ranging from dry skin to mood swings and it can be toxic to the liver. We expect Grace to be on this therapy for six months.

Some of you may recall that we have been contemplating 3F8 Monoclonal Antibody treatments offered at MSKCC in NYC. This is a post-transplant therapy in Phase II trial designed with the intent to reduce relapse rates for high risk NB patients who complete their ABMT with NED (no evidence of disease). We have been researching, praying, and driving ourselves crazy for months trying to make a decision. We have decided not to pursue this therapy for now. Our decision was based on many factors. The most important factor was Grace’s weakened liver. We (and Grace’s docs) aren’t sure that it is up to the tremendous quantities of pain meds that are required to endure this therapy. This is truly an answer to prayer. We have agonized over this decision for months…and we are finally completely at peace with this decision. Thanks so much for your prayers. We will re-evaluate this decision as Grace’s condition changes and as new data becomes available.

Take care…..

PS Mom discovered a new technology second only to the “pay at the pump” for Moms of an immunosuppresed child – Lowes –to-go. The Lowes Foods in Clemmons offers a service which allows you to order your groceries over the internet and then simply drive by a few hours later and pick them up at the curb. You key in your credit card information when you order so you don’t even have to go in to pay. Evidently, the Lowes “personal shopper” does a much better job with a grocery list than Dad. Everyone’s happy!!!

Saturday, September 01, 2001 at 11:36 PM (EDT)

We’re HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We left Durham Thursday afternoon "with the cancer in our rear view mirror!" ( A friend of a friend who is battling breast cancer and who had a stem cell transplant a Duke this spring left us that sentiment on our guestbook a while ago and we have clung to that thought. Please say a prayer for Jodie as she approaches scans/tests...her website is www.caring.bridge.com/nc/jhelms).

We got HOME Thursday afternoon to find such wonderful gifts! A big thanks to everyone for making our homecoming even more special! Our street was lined with multi-colored balloons and signs on the mailboxes of our neighbors welcoming Grace home! Our yard was decorated with a huge banner, complete with balloons and ribbons, from our church. Our driveway was lined with balloons and there was a "welcome home" sign on the mailbox (thanks Yount family!). A friend from church, Amy D., had planted mums in front of our house and put a beautiful garden stone that says "Our faith is built on the Rock" in our natural area and surrounded it with ivy. Amy also planted the most beautiful gerber daisy that we have ever seen. Uncle Wendell trimmed the bushes and added more mums and fresh pine needles to the mix! Aunt Tammy stocked us up on groceries and Jacob had decorated the inside of our house with more balloons and a banner. Aunt Rene and Darla had the house spotless and Uncle Mark not only cleaned but came to Durham on Thursday to help move us home. Someone put out fresh doormats (but we don’t know who?) as well.

Grace was over the top!!! She and Mom rode together while Dad and Laura followed in the truck. Grace asked ALL THE WAY HOME if we were there yet and how much longer it would be? When we turned onto our street and saw the first sign and bunch of balloons, Mom stopped the van so that she could see. Grace burst into tears and said, "Everyone loves me and is glad that I am back, Mama!" Of course Mom could barely see to drive! Grace cried and cried with joy. We stopped at each mailbox all the way down the street to admire our great neighbors’ hard work. Whenever we pulled into the driveway, some of our neighbors greeted us and Grace was running all around the yard looking at the decorations. Laura, who adores balloons, was equally impressed and went tearing down the street, after all the balloons, with Dad chasing her! Grace just kept saying, "It’s my real house, It’s my real house....!!! When we went inside, she went straight to her room and said, "It’s my bunny room! I’m going to stay here forever!" Which is just fine with Mom and Dad! We thought that Laura would have forgotten our home in the time that we have been away, but she charged up to her room as if she had never been away. She also remembered where everything was which was surprising! She was really happy too, probably because she knew that everyone else was excited.

On Friday we took Grace to Brenner’s. It was sooo good to be there. Her main blood counts were fine, but for some reason her bilirubin jumped up to 1.9 from .6 on Wednesday. It may be related to stopping TPN the day before but that’s just a guess. Our short clinic visit became an all day affair as Grace had an ultrasound just to check to status of her liver and gallbladder. Everything looked fine, praise God, so we have decided to try to not worry about the labs. It was stressful to have these odd labs only a day after leaving Duke. We were a little concerned that we had left too early, but later decided that we were glad that we had gotten out when we did! We feel very confident that our Drs. at Wake Forest are more than capable to handle any issues that arise. Grace did not need blood products and we do not plan to repeat labs until Tuesday. Dr. Driscoll would have a stroke if he knew that we were going that long! But we can always tell when Grace needs blood or platelets so if we think we need labs we can always call in and drop samples off. Grace’s weight is hanging in there and her appetite is good.

We have spent today trying to unpack and Grace and Laura have been very helpful as you can imagine! Tomorrow Grace will get to see Uncle Wendell, Aunt Tams, Jacob, Gamuddie, and Nana. We plan to make ice cream. Hopefully we will be able to work out a Labor Day get together with Uncle Mark, Aunts Rene and Teresa, Hannah, and Benjamin, Pawpaw and Mawmaw, and Mama Ruth. Grace is really excited about seeing her family, especially those cousins, for the first time since transplant.

We want thank each of you for all of your support during this difficult journey. Grace continues to need your prayers, but she is well on her way to recovery. Your prayers, cards, messages, gifts, and meals have sustained us in so many ways. We have been so blessed by each of you. We also would like to thank you for your prayers for all of the children and families that we have met along the way. You have been so faithful. We just praise God for bringing our family through this storm. It has been a long road and while we still have more to travel, for now we will just rejoice that we are HOME! (We can tell that we have been gone a long time by Laura’s shoe size...size 2 when we left, size 5 as we return!) Thanks so much for checking in.

Wednesday, August 29, 2001 at 10:03 PM (CDT)

Day+69. We are a blessed family. It is rather like Christmas Eve at the vacation house this evening. The kids have stayed up way too late, there is still much to be done in anticipation of the "big day", and it will probably be a little hard to fall asleep tonight.

Grace was officially released back to Brenners today. Her counts were all good except that she needed platelets. We wore Dr. Driscoll down until he allowed us to discontinue Grace’s TPN after tonight. So, tomorrow night she will sleep "unhooked" for the first time in almost 3 months. If her weight drops over the next few weeks, it may have to be re-started, but we are hopeful that she can maintain on her own with the help of the Megace. We will go to Brenners on Friday to get acclimated and then return to Duke at the end of September for Grace’s 3 month scans and immune studies.

Grace’s port is due to be flushed on Monday and although Dad did a great job of accessing it in the hospital, Mom was a little nervous about him doing it solo. So, we invited Grace’s primary nurse, Andre’ over for take out pizza and a little "port entertainment." Dad did a good job, but it did make Mom more relaxed knowing that we had "back-up" standing by. Since Andre’ was coming over for the port, we also invited Cheryl and Macy (or Maisy as Grace calls her), our co-primary nurses. It was soooo good to see them outside of the hospital. We owe them such a debt of gratitude for all that they have meant to us this summer. Grace was so excited about them coming over and she really had a good time. We know that time and distance will separate us, but all of those that cared for us in the past year will always be near to our hearts. Hopefully, we will be able to work out another get together with our Durham buddies soon and we plan to feed them a little better than take out pizza next time!

Leaving tomorrow is going to be bittersweet. We are very excited of course, but it is a little like a graduation. There are so many mixed emotions. It is a little scary to leave the vicinity of the transplant team. It is a little sad to move from the house where Laura learned to walk. It is very sad to leave all the wonderful people that we have met. Our neighbors in Durham have been so kind. They have kept us company, mowed our lawn, and taken us under their wings as their own. Our medical caregivers, from the housekeepers to the receptionists to the doctors and nurses, have become our support network in so many ways. And then there are the other kids and their families... so many new friends who have so much hope for a beautiful future...and so many that we continue to grieve for whose children touched our hearts so deeply even though their time on earth was so short. Like a graduation, everyone will scatter and some we will not see again. Even so, we are a changed family because of the ministry of so many to us during such a rough time.

Thank you so much for all for your prayers during our time here at Duke Children’s Hospital. Your faithful prayers have sustained us during some pretty tough days. Grace still has a way to go before she is completely recovered but God has brought her through so much. The anticipation of seeing her face as she walks through the door tomorrow is exciting. I can remember looking back at our house as we pulled away to move to Durham and saying a prayer that we would all return together. Tomorrow will be a happy day!

Thanks for checking on us.....(we will most likely not be able to update tomorrow and Friday we will be at Brenners, but we will try to post ASAP after arriving home!)

Monday, August 27, 2001 at 10:25 PM (EDT)

Day+67. The days here are so busy that getting an update posted is getting harder and harder!

Grace and Mom spent most of the day in the clinic. They arrived around 11:30 and did not leave until 6:00. Lots and lots of waiting...which happens to be the clinic's claim to fame. The medical care is great however the set-up is frustrating at best.

Grace needed red blood today, the first time in over 2 weeks. She will likely need platelets tomorrow as they were 15 today. Her WBC continues to hover around 10.0. Her eating continues to pick up and we are hoping to begin to wean her from the TPN later in the week. Her bp remains a little elevated but is fairly close to normal.

We are still planning to have our last clinic visit here on Wednesday and head for Advance on Thursday. Laura has been very busy unpacking all of the things that we packed yesterday. Grace talked about coming home all day. We are beginning to get excited!

Dad went by the "real house" today to exchange his car for the truck in order to move us home. When he arrived, he found Uncle Mark, Aunt Rene, and Darla scrubbing everything in sight. We really appreciate all of your hard work guys! Now you know what pigs we really are! Now if we could just get you to come over and do our deep cleaning semi-annually...

Thanks for checking in and for your prayers. Please also remember one of Grace's transplant buddies, Max, in your prayers as he struggles with kidney function issues.

Saturday, August 25, 2001 at 10:26 PM (EDT)

Day +65

Things are continuing to go well here. Grace had good lab results on Friday, so we got to skip today...we didn’t even have to draw labs. Tomorrow we will draw labs. If they look good, we’ll be "off the hook" until Monday. We’re still planning to move home on Thursday. We are very excited, but we’re dreading the thoughts of packing everything here and finding a place for it at home! It’s amazing how much stuff you can accumulate in just a few months.

Dad’s transition to work has been smooth. His new position is Demand Manager for Tyco’s NetConnect product line. There’s a lot to learn, but it has actually been very nice to have a "fresh start" after being out of the office so long.

Mom got to spend a couple of hours alone today. She did some shopping in the area. Of course she called in three times while she was gone to make sure everything was okay.

Thanks for checking in with us. We’ve really enjoyed all of the guestbook messages and e-mails.

PS Grace continues to eat more each day. She’s still not eating normally, but she’s soooooo much closer than she was just a week ago. We’re praying that she’ll be off TPN in a couple of more weeks.

Thursday, August 23, 2001 at 03:44 PM (EDT)

Day + 63

Today has been a great day so far. Mom drew labs and dropped them off at the North Pavilion this morning. They looked great. Her WBC was 9.6, hemoglobin 8.9, and platelets 103!!!! With counts like those, Grace got to skip clinic today. She’ll go back tomorrow for a checkup regardless of her counts.

Grace and Laura took a nap at the same time today! Mom was able to get supper together without all her “help.” Maybe there really is light at the end of the tunnel. One final praise for today – Grace is slowly starting to eat. She had several hash browns and bites of biscuit for breakfast. After her nap, she had 5 – 6 potato chips and a few bites of yogurt. She has already put in a request for supper. We’re not sure if the Megace is working, the affects of reducing TPN is helping (it was halved yesterday), her GI tract is healing, or it is a combination of factors. We just ask that you pray the trend continues. We would love to see Grace eating a reasonable amount when we move home next week.

We do have another concern/prayer request. Grace has been experiencing increasing hearing loss, since her diagnosis, as a result of the intense chemotherapy. Prior to the ABMT, Grace had moderate high-frequency and mild mid-frequency losses. We have not had another audiogram following her ABMT, but we suspect that she has incurred further hearing loss due to the mega doses of chemotherapy and long-term use of antibiotics. We had already started to make interventions to ensure Grace would not have speech or language development delays. They were simple things like focusing on our clear enunciation, reducing background noises such as appliances and TV, and following her speech patterns a little more closely. It is very possible that she may need hearing aids or at least a FM devise in a group setting such as pre-school. It is critical that young children be able to hear all frequencies clearly in order to develop speech normally. Please understand that Grace is by no means deaf. She can function quite well in most situations. We’re not even 100% sure that her hearing is worse now than before her transplant. We will have her tested again after we get home. Please pray that we will have the wisdom to handle this appropriately.

Thanks so much for checking in. Have a great day.

Wednesday, August 22, 2001 at 10:02 PM (EDT)

Day +62

Very quick update before bed......

WBC = 7.6
Hemoglobin = 8.6
Platelets = 7 - needed a transfusion

We are scheduled to move home on August 30. YEAH!!!!

Grace ate a few bites of ham and some ranch dressing today....at least it is a start.

Thanks for checking in.....

Tuesday, August 21, 2001 at 010:22 PM (EDT)

Day+61. It has been a peaceful day. Grace's labs indicated that she did not need any blood products today, so we got to miss clinic. Her WBC was 6.6, her hemoglobin was 9.0, and her platelets were 19k. We will be going to clinic tomorrow to see Dr. Driscoll. Hopefully we will have a better guess at a date to transfer care back to Brenners. Grace also needs a breathing treatment that protects her from specific types of pneumonia. These are always loads of fun! She may also need blood products, so it will probably be a long day.

Dad went to work today and it went really well. He is actually starting a new position within the company and he is really excited about a "fresh start". Mom, Grace, and Laura were just fine,especially since we didn't have a clinic visit. The girls are sleeping better these days and Mom actually got them to take a nap at the same time. All these months apart has put them on opposite schedules and so we are working on establishing a routine. They finally have a bed time again as well.

Mawmaw and Pawpaw went home today and Nana returned for what will hopefully be the last cycle of babysitting Laura. Tonight we went to the lake/park and did some walking. Grace is getting so much stronger each day. We took some bread to feed the ducks and turtles (at a germ free distance, of course!) but Laura decided that she was hungry and ate most of the bread! We have one kid that won't eat and one kid that never gets her tummy full!

Now that Dad is back at work we are getting up at 5:00am so he can leave by 5:30 and beat the Greensboro traffic. That being said, it is time to hit the hay! Have a good night! And thanks for your prayers!

Monday, August 20, 2001 at 08:15 PM (EDT)

Day+60. Another good day. Grace's WBC was 5.6 today with an ANC of over 4000!!! Her hemoglobin actually went up to 9.2. We are not sure if it was a true increase or if it was just a hydration issue.(Your hemglobin varies with how hydrated your body is) Her platelets were 22k. Weight was stable and bp was close to normal. We only have to drop off labs tomorrow unless we need blood products. Hopefully the numbers will hang in there and we can have another day off from clinic. We met with Dr. Driscoll and he hinted that we could possibly transfer care back to Brenners before Labor Day, meaning the end of next week. He said that at the latest it would be only a few more weeks. He will be getting in touch with the folks there early this week to update them on Grace's needs (transfusions etc.)
and hopefully we will be able set a target discharge date on Wednesday. We were also able to discontinue a few oral meds, including Actigal for her sludgy gall bladder that effects her liver. We will look at her liver enzymes later in the week to see if she can go without this med. We will be starting Megace, an appetite stimulant tomorrow to try to get her eating. Please pray that this will be the answer and she will be able to stop her TPN soon as this irritates the liver. Please also pray that her body will start to make red blood cells and platelets soon so that she will need less transfusions and can get her central lines removed within the coming months.

Grace will return to Duke at the end of September for scans to determine that the neuroblastoma monster is indeed gone. She will have these scans every 3 months for the first year post transplant. At that time, she will also complete some immune studies to determine if she is ready to face the world's germs (ie; stores, crowds; etc.). That should be around Day 100 which happens to fall on September 29, the day that Grace's tumor was discovered..kind of spooky huh? Until that time Grace, Laura, and Mom will continue to be in hiding. Dr. Driscoll did say that it would be O.K. for Grace to see her extended family, as long as they were not sick, had not been around anyone that was sick, and washed their hands well. So while she won't be able to see other kids,or any crowds, we can't wait to see those COUSINS!!!! Mom and Dad are as excited as Grace to see Benjamin, Hannah, and Jacob! Maybe if we get out before Labor Day we can see you all then, what do you think guys?

One big issue is that she cannot be around anyone who has been recently vaccinated (within the last 30 days). Fortunately, all of the cousins are school age and don't get a lot of shots at this point. (Laura has not been able to have any immunizations since her 9 month ones.) So, church may be out for a while because of all the baby exposure combined with the direct contact. Also because Laura will not be able to get the chicken pox vaccine, there is a concern that she would pick it up and give it to Grace.(Chicken Pox is potentially life threatening for cancer patients). Laura will likely be picking up everything that comes along because she has been so isolated. She has only had 2 colds in her life. Of course, we are going to be really paranoid for a long while to come. The world of a 3 year old is one of runny noses!

While we want Grace and Laura to get back to normal ASAP, the reality is that they have not had normal lives. Entering the "real world" is going to take some adjusting for all of us. Over-protective does not begin to describe the parents of a sick child. A child who has endured so much, been so vulnerable to illness, infection, and accidents (low platelets). You feel as though you are in "hand-to-hand" combat to protect them. In addition we have two girls whose social development has been slowed. As much as we want to "jump right in", it is going to be new for all of us. It is going to take some time, but we are hopeful that we can at least look normal, from the outside anyway, one day soon. Our hearts are forever going to be different. That may not have to be a bad thing, but we are all very different people than the people we were a year ago.

Thanks so much for your prayers. Tomorrow is going to be a big day for us as Dad returns to work!

Sunday, August 19, 2001 at 09:18 PM (EDT)

Day+59. Today has been such a good day! Grace's counts were all great. Her WBC was 4.6, her platelets were 32k, and her hemoglobin was 8.9. The hemoglobin actually fell quite a bit but she is going so much longer between transfusions. Because of these good numbers, we did not have to go to the unit today for the first time since discharge. It was soooo nice. (Also yesterday, Grace's bp was normal again 107/45 and her weight was stable, which was another reason to not be seen today. The diuretics seem to be doing the trick.) We didn't think that Grace really minded her daily check-ups, but she was so excited to stay home. We generally give her a morning bath before going to clinic, and this morning she did not want to get out of the tub. We later found out that it was because she was afraid we would go to the clinic after the bath anyway.

We had a laid back kind of day. A little playing, a little cleaning, a little resting. Grace went for a walk with Laura and MawMaw and PawPaw and actually did some lengthy walking. She has felt so good today. She was up for about 12 hours with no nap. Mom and Dad went to Target...together...without our two monkey girls! It was the first time that we have left both Grace and Laura since Laura has been born to go somewhere together. We were gone about 2 hours and it was nice but strange. It has been over a year after all. It doesn't seem like it has been that long. Laura has certainly spent loads of time away from us, but Grace has not. We felt like it was a healthy first step to spend a few hours with Grandparents. They both did fine. Having Laura around probably made it easier for Grace to separate although it did not seem to be an issue as she hardly looked up from playing to tell us good-bye! Hopefully, it will be a first step to making Grace and Laura's lives closer to normal.

Mom talked to Melissa Powell today, Jon's Mom. Jon is doing fine. We are hoping to see them as soon as our schedules allow and as soon as Grace recovers. Please pray that Jon's appetite will pick up and he will begin to gain weight.

Thanks for all of your prayers and messages. Please pray for Dad's smooth transition back to work on Tuesday. Please also pray for Grace's blood counts and appetite to normalize. Thanks for checking on us!

Saturday, August 18, 2001 at 10:31 PM (EDT)

Day + 58

Today has been pretty uneventful. We dropped off labs this morning. The unit clerk from 5200 called to let us know that Grace’s platelets were 4 today, so of course we had to go to the BOPP room to get a transfusion. Grace’s WBC climbed to 4.3 today and her hemoglobin held tight at 9.9. It took quite a while to get the transfusion because the BOPP was packed. It was good to see so many of our friends from 5200 "BOPPing" as well. So many kids have been released in the past week that we knew very few of the inpatient kids.

Dr. Kurtzberg was the attending this weekend. It was very nice to speak to her. She is so caring and so brilliant. It takes someone very special to build a great program like the PBMT at Duke. We are making some very important decisions about post-transplant therapies right now. Dr. Kurtzberg’s advise was just what we needed today. Please pray for us as we finalize our decision over the next few days.

Tomorrow is a lab-only day. If Grace doesn’t need any transfusions, we can skip the BOPP room tomorrow.

Grace had a burst of energy after dinner tonight. She and Laura chased each other up and down the hall for what seemed like an hour. It was so very nice to see. They were both giggling and screaming (in a good way) the whole time. Afterwards, Grace slipped away and got very quiet. Mom found her in the "master bath" (a half bath the size of a small closet). She had pulled all the towels down and put them in the sink. She had also decided to turn on the tap and soak them. Ahhhh, the joys of a normal preschooler.

Thanks for checking in.

Friday, August 17, 2001 at 05:23 PM (EDT)

Day + 57

Sorry that we missed our update yesterday. We just got too busy. Grace has been doing well. The last two days have been pretty long in clinic. Not really doing much but sitting around waiting....maybe next week will go better. Both Grace’s weight and blood pressure have been down for the past two days, YEAH. The Diuril seems to be helping. Grace’s counts looked great today. Her WBC is up to 3.7, her hemoglobin is at 9.9 and platelets at 13. The platelet number is very low (normal being 150-300), but she hasn’t had a transfusion since Tuesday. It seems that she lengthening the time between both platelet and RBC transfusions. That’s a good sign that her marrow is making cells. Her parameters for transfusions have been lowered in hopes of further "challenging her marrow." Grace still has little appetite. She did ask for creamed potatoes yesterday. She ate a couple of bites which is encouraging.

We went back to the park in N. Raleigh yesterday in hopes of encouraging Grace to be active. It started out great. She bounded up about 40 steep steps and even ran for a few bursts. Then she fell. She got a simple scraped knee. The problem is getting a simple scrape to stop bleeding with a very low platelet count. We had some wash cloths along in case Grace vomited. Mom used one to hold pressure while Dad ran back to the van to get the "emergency bag." Fortunately, we had betadine swabs and a sterile dressing. Mom was able to slow the bleeding to a ooze and Dad cleaned the scrape and bandaged it. I’m sure all the people at the park thought we were some kind of hypochondriacs or something. Of course that ended our evening out. When we got back we started G-CSF and TPN and paged the Fellow on call. He said that we had done all the "right" things and that we didn’t have to come into the BOPP unless Grace’s bleeding started again during the night. Dad can’t make fun of Mom’s over-packing ever again. Okay....maybe just not for a week or so.

We’re hoping to meet with Dr. Driscoll on Monday. We have many questions for him, not the least of which is "when can we go home?" Please pray that Grace will continue to do so well. We really feel that we may be coming home in the next few weeks if nothing unanticipated happens. We’re making another big transition on Tuesday. Dad is planning to return to work. He will be doing a combination of commuting to Winston Salem, working from the vacation house, and possibly working out of one of Tyco’s facilities in Fuquay-Varina (about 35 minutes from the vacation house). The folks at Tyco Electronics have been fantastic ever since Grace’s diagnosis. No one could ask more from an employer. While Dad is going to miss his girls terribly, we are all looking at this as one step closer to returning to our normal lives. At least one of us will be able to start having conversations that don’t start with TPN, G-CSF, platelets, RBC, white count, clinic, blood draw, "the unit", oral meds, blood pressure, or "when can we go home?".

Thanks for checking in.

Wednesday, August 15, 2001 at 11:15 PM (EDT)

Day+55. Today has been a little long but otherwise good. Grace's counts were good this morning, WBC 3.0, Hemoglobin 9.9, and platelets 46k. Bili was .8, very normal. We don't get a diff everyday so we don't know the ANC for today.

We spent most of the day in the clinic. Grace's blood pressure was awful. At first check it was 198/99. Not good. It was checked over several hours and gradually showed some improvement, enough to go home anyway. She got her daily dose of Lasix to get rid of the excess fluid which is driving up the bp. She was also given a prescription for Diuril. She was on this diuretic in-patient and now it is being tried again to get the bp down. While ultrasound shows an improved liver, we know that there are bound to be some continued problems. This is resulting in the excess fluid. Hopefully, the added drug will give her a better bp. If not, she may go on bp meds for a while to get things under control.

During our wait in the "fish tank" room, isolated waiting room for post-transplant kids, we got to see several families that we spent time on the unit with. It was nice to see the other patients on the "outside" looking so good. Unfortunately, part of our wait today was because there were several kids having difficulties. We would ask you to pray for Evan, who we have mentioned here before. Apparently he experienced breathing difficulties, may have had a seizure (this is third hand info) and had to be re-admitted ( he was just discharged,for the third time I believe, on Monday.) He may have some type of bacterial or viral infection. He has been through so much and he really needs your prayers as do his parents, Steve and Betsy, and his adorable brother Avery. Please also pray for Austin C. who was re-admitted with a line infection, Andrew who continues to feel lousy and had fever today, and for Kevin, whose transplant did not yield donor cells.

We didn't do anything out of the ordinary this evening. Our home health pharmacist, Jennifer, came by to drop of a supply of TPN. It was nice to meet the person who has been making Grace's "dinner" for the past week. Mom and Dad enjoyed talking "home health" with her.

Tomorrow will be more labs and a bp check. Please pray that the bp will improve and that Grace will stop feeling so "pukey" as Grace calls it. (Although today she only got sick a couple of times and slept through the night without getting sick for the first time since transplant!)

Thanks for checking in and for your prayers for us and our hospital family.

Tuesday, August 14, 2001 at 11:19 PM (EDT)

Today was fairly uneventful. We went into clinic. Grace needed platelets - she got them. Her blood pressure continues to be high, but it improved after a dose of Lasix. We came back home and she took a long afternoon nap. For the highlight of the day....we went to a nice park in North Raleigh. Grace and Laura were both thrilled to be seeing something new. It was great because there were a lot of people there, but with it being outside and since none of them were close by we didn’t really have to worry.

We’ll see Dr. Driscoll tomorrow in clinic. Hopefully, that will be about it. Maybe we all can venture back out into the world again!

Take care. Thanks for checking in.

Monday, August 13, 2001 at 09:33 PM (EDT)

Day +53

We drew labs this morning and went to the clinic. Dr. Driscoll saw us and said that Grace looked great. All her labs looked good. Her WBC was 2.5 and her ANC was 1850....YEA!!!!!!!!! Her blood pressure has been increasingly elevated over the last few days. We are hoping that it is simply due to fluid retention. She’s been off prophylactic diuretics for about a week now. She got another dose of Lasix in clinic and her blood pressure fell compared to the pressure before Lasix was administered, but it was still elevated. We discussed our concerns about Grace’s appetite and vomiting with Dr. Driscoll. He said that it was not unexpected, based on the ABMT and prior chemo. Her belly is still healing and she will probably will have GI distress for some time. If she is not eating at all in two to three more weeks, Dr. Driscoll said we would try Megace - a appetite stimulate. It almost always works. We hope that she could eliminate TPN two to three weeks after starting Megace if that becomes necessary.

We’ve posted two new pictures to the website. Thanks to the Klassen’s and the Situ’s for providing them.

I’ve provided a short list of prayer requests. Thanks so much for all the prayers that you’ve lifted for Grace and the rest of the Cain Clan.

1. Pray that Grace’s blood counts would continue to normalize. So many problems and drugs will go away as this happens.
2. Pray that Grace’s nausea will subside and her appetite return.
3. Pray that Grace’s blood pressure will decrease as her fluid balance normalizes. There are many reasons for a post-AMBT patient’s blood pressure to be elevated. Some of them cause life-long blood pressure problems that we obviously want to avoid.

Sunday, August 12, 2001 at 10:27 PM (EDT)

Day + 51

Today didn’t go quite as planned. We had hoped that it would be a free day....after dropping off labs this morning we found out that Grace needed both RBC’s and platelets. We went in to the BOPP room where the BOPP nurse thankfully had everything ready. By the time Grace had red blood, platelets, Benadryl, and two doses of Lasix infused we had spent five hours in the BOPP. At least maybe we can look forward to a quick day in the clinic tomorrow. Her WBC went back up today to 1.8...that’s very good considering we just halved her G-CSF on Friday.

Otherwise we had a good day. I guess were feeling a little tired of this whole routine and ready to have a normal life. It will come soon enough. We are very thankful that Grace is doing so well.

On a good note, when we returned from the BOPP, Maw Maw and Paw Paw were grilling hamburgers. They were so good. It did feel a little like a real Sunday night eating burgers with the Grandparents. Grace is well on her way to eliminating TPN - she had water and the corner off of a Cheese Nip cracker today.

Thanks for checking in.....

Saturday, August 11, 2001 at 09:47 PM (EDT)

Day +51

We had another good day. We drew labs at home and dropped them off to be processed. Grace needed platelets today, so we went to the BOPP room on the unit since it was Saturday. It was nice to see our friends on the unit...and it was also nice to come back to the vacation house. The BOPP nurse told us to draw the same labs tomorrow. If we don’t need RBC’s or platelets, Sunday will be a free day!

Laura is doing well. She is much happier and seems to be calming down since everyone is under one roof again. It has been so nice to get re-aquatinted with her.

There’s not a lot of news today. That’s a good thing for us right now.

Thanks for the continued prayers and support.

PS Grace had to take 18 pills today in order to keep 8 of them down. I don’t think our 30 day supply is going to last 30 days!

Friday, August 10, 2001 at 09:59 PM (EDT)

Day +50

Very quick update......tonight the girls were both in the bed sleeping soundly by 9:15!!!!!!!!! We started a new routine of dropping off blood samples at the North Pavilion in the morning and then bringing Grace over to clinic later for a check up. Everything went smoothly today. We got to the clinic at 11:00 and were home by 2:00. Not bad. Grace looked great. Grace’s liver chemistries and kidney labs looked very good. Her WBC was 1.8 and her ANC was 936! Grace started once-a-day G-CSF (rather than twice-a-day) so her WBC and ANC will actually drop temporarily over the next week or so. Please pray that they will not nose dive.

Grace is doing great with everything. She’s taking all her oral meds with no problem. Keep praying that her appetite will pick up and she will start eating soon. The nurse practitioner told us today that we can expect a couple of lab-only days next week. That means that after dropping our labs off we can skip clinic if Grace doesn’t need any transfusions!!! We will be back on the unit tomorrow and Sunday. The clinic is closed on weekends and all outpatient visits are done on the unit itself. We will probably need a platelet transfusion tomorrow. Otherwise, we’re praying for an uneventful day.

Please pray for Andrew. He continues to have a difficult time with his liver.

Thanks for checking in.

PS By the way Mom is reading a recipe for curried goat right now in the Winston Salem Journal. If you would like some give us a call. There is also a recipe for peas in a carrot-pudding ring - this is a BREAKFAST dish. Mmmm Mmmmmmmmm. I think we’ll stick with TPN.

Thursday, August 09, 2001 at 09:30 PM (CDT)

Day + 49

Who ever thought a little brick ranch in South Durham would look so good???? Our discharge went very smoothly...we had our confetti send off around 1:30 today. Grace wanted to ride her trike on the way out...she ended up riding it all the way to the van in the parking deck (out of the unit, down one set of elevators, through a long tunnel under Erwin Street, up the elevators in the deck, and to the van)! She refused to let us brush the confetti off of her for several hours. Her car seat is covered.

Things went very smoothly with home health. We have infused the G-CSF and have started TPN (it will run until tomorrow morning). We’ll start the new clinic outpatient routine tomorrow. We hope that the daily visits will only last for a few weeks.

Grace ate a few bites each of American cheese, Swiss cheese, and grits tonight just before bedtime. Maybe we can start a new trend.

The best news yet...by 10:00 tonight both Grace and Laura were in their own beds sleeping soundly!!!! Hopefully, they will stay there all night.

Wednesday, August 08, 2001 at 11:48 PM (EDT)

Day + 48

Today was another great day! We got the results of yesterday’s ultrasound. Grace’s liver and gall bladder look perfectly normal!!! The only irregularity was that the gall bladder was filled with “sludge”, but that always happens when using TPN. It should resolve itself as soon as Grace starts to eat real food. She had a single lima bean today…so we’re well on our way….

Everything is set for our discharge tomorrow. We just have to go over all the particulars with one of the transplant coordinators. Grace is very excited. She’s really starting to feel like her charming self. It is so nice to have her back.

Its been a long day and Grace is still up watching Cinderella…..we’ll update from the vacation house tomorrow!

BTW – Grace’s WBC was 2.1 today. She needed platelets but no RBC’s today.

Please pray for Jon Powell. He’s having a tough time with his latest antibody treatment. The Powell’s will be in NYC over the weekend and for much of next week.

Tuesday, August 07, 2001 at 11:48 PM (EDT)

Day + 47

Today has been a long, great day. Grace’s WBC was 1.7 today. We didn’t get an ANC since no diff was run. Her other blood counts looked good (in ABMT terms) so Grace didn’t need red blood or platelet transfusions. The ultrasound tech came this morning for Grace’s dopler of her liver. We won’t hear the official radiologist’s report until tomorrow, but the tech seemed very pleased. She said she couldn’t believe how well Grace had recovered.

We’re tentatively planning for a Thursday discharge. The home health nurse came by today to go over the basics of what we’ll be doing when we go outpatient. We are very fortunate that we already have experience with almost everything we’ll have to do. The home health nurse will meet us at the vacation house on Thursday to walk through the first night’s work. It looks like we’ll have to infuse two drugs once a day, and mix and run TPN for 12 hours daily. Grace will also be on four oral drugs that will need to be taken twice a day. It all seems pretty straightforward now…but ask us after we start doing it!

Nana went home today for a much-deserved break. Maw Maw and Paw Paw came today and will be staying with us for the next two weeks. Both of the girls were thrilled to see them. They brought some great home cooking from our friends at Macedonia. Thanks to Darla, Amy D. and Amy M. Amy – we’ve already eaten the chicken crepes and they were fantastic. Darla – half of the five flavor pound cake is already missing!!!

We pray that tomorrow will be our last full day on the unit. The only major events will be moving one more drug from IV to oral form. Grace took three pills tonight without any problems! We’ll only need to add one more to the mix. Thankfully we can get all her oral drugs in pills rather than suspensions…Grace has grown to hate liquid meds.

Thanks so much for the continued prayers….they are getting us through daily!

PS Andre, our primary nurse, taught Dad how to access Grace’s port yesterday. Both Dad and Grace performed flawlessly. We took our usual positions, Mom did the calming, distracting, and cajoling……..Dad did the dirty work. We make a great team! The next time you need a blunt, ¾” needle jabbed into your chest, give us a call. We’ll be happy to oblige.

Monday, August 06, 2001 at 08:14 PM (EDT)

Day+46. Engraftment….ready to be discharged….ANC above 500….are these actually phrases that are being used in the same sentence as Grace’s name? There are 2 bags full of pretty little stem cells still frozen solid in the Duke labs. Grace did not need her boost/transplant today as we woke up to an ANC of 630! Dr.Driscoll said that he could not believe that Grace pulled this one off. Her WBC was .9 this morning but her diff showed lots of baby cells. This afternoon, her WBC was 2.0. She got blood and platelets today and apparently some of her platelet issues could also be due to the engraftment. She was sick a lot during the night but today she seems to feel a little better. She went for a walk with Mom, Dad, and Laura this afternoon and got some fresh air. If she continues to show improvement, we could be discharged by the end of the week. She will be having a VOD follow-up ultrasound in the morning. We are not anticipating any surprises…please pray that this will be the case. Home health is also coming tomorrow to make sure that we remember how to use the pumps and to teach us how to infuse the TPN (we have never had to mix and infuse this before.) She will go home on 12 hour TPN which will be infused during the night. She will also have GCSF to stimulate her marrow to keep those cells coming. She will have several other meds including an anti-fungal (Fluconozole),an anti-viral(Acyclovir), Actigal for her gallbladder, Zantac for her tummy, Lasix for fluid retention, Methodone for her drug addiction, and some kind of antibiotic but we are not sure which one yet. We are hoping that the nausea will diminish by the week’s end so that these last meds can be given orally and we will save time and energy by not having to do all these iv. The truth comes out; we are sooo lazy. Either way it is a great deal less than the kids that have cord blood transplants….their parents deserve a medal for all that they have to keep up with at discharge.

We are cautiously optimistic about Grace’s progress and are allowing ourselves to be a little excited at this point. On Wednesday we will have been here 8 weeks or 56 days. So many kids are here for longer, but when you came in only planning to be here until day+20, it is a long time. We feel good about Grace’s release. We are not really worried about too much other than our daily clinic visits. She will have to be seen in the clinic each day for a while and on the unit on weekends. That is a lot of germ exposure. It is also inevitable that we will have some long days. However, through this whole rough experience, we have kept telling ourselves that if we EVER get discharged , we will never complain about having to wait in the clinic….we will just rejoice that we still have her and that she made it through transplant. Of course, we are already starting to dream of Advance.

A few days ago we posted a thank you for all of your prayers, particularly to our church family. Tonight we would like to say a special thank you to all of Grace’s nurses from the past year. We have had some of the best nursing care both here at Duke and at Brenners. Grace’s nurses have not only provided medical care but instruction/education for Mom and Dad as well. Probably the greatest gifts have been the listening ear , the shoulder to cry on, the encouraging words, and the shared happiness whenever things have gone well. It has been an overwhelming experience for us at times and you guys have been a friend to us and to Grace and Laura. You are some of the only people we have seen in the last immunosuppressed year and you have become like family to us. Grace still talks about her nurses at her “old hospital” and wants to return to visit them. She was really disappointed whenever we were first admitted to the unit that her “regulars” wouldn’t be her nurses here. Since she has been here, she has formed other close relationships and is already making plans to see her “friends” once she is on the outside. We are trying to convince some of her nurses here to “babysit” as Grace enjoys them so much! At any rate, both sets of our caregivers have helped us through one of the scariest times of our lives. We are forever grateful for their willingness to go above and beyond their required duties to make one very sick little girl feel special and loved.

Thanks for checking on us and for all of your prayers and well wishes.

Sunday, August 05, 2001 at 010:52 PM (EDT)

Day+45. Today has been another good day. Grace’s WBC was a 1.2 this morning! Her baby cell (segs/bands) production slowed a little so her ANC remained about the same at 552. Her platelets were a little low, so she had repeat labs done around noon (she didn’t need platelets but will probably need them tomorrow). This time her WBC was 2.5! Supposedly the 4:00am labs are the most accurate so we have ignored the 2.5 pretty much, but still it was nice to see. All of her other labs were fine. After you have 3 consecutive days of an ANC of 500 or above, you have officially engrafted. Tomorrow will be day 3 and we are hopeful that Grace’s ANC will be above 500 again. It’s it almost a given at this point that we will, yet again, avoid the boost/transplant planned for tomorrow but Dr.Driscoll will make the official call in the morning. In the Dr./nurse conference room on the unit, there is a board that lists the patients that they are planning to discharge soon. It is appropriately called the DC list. It is not something that we have actually ever seen and it is talked about like some kind of urban legend. Anyway, we found out tonight that Grace’s name has actually made it on the list. The estimated time frame is for the end of this week but there is a lot that has to happen for that to be true. She will have to show a great deal of continued cell growth and will have to come off of several IV meds. We actually think that the following week would be a better guess at a discharge, especially knowing Dr.Driscoll’s conservative personality. Either way, the word “discharge” is not something that is spoken too loudly around here because of the multiple complications that could crop up and delay things. We will not be packing our bags until the last minute! ( Although it is nice to know that we finally made the list!) So yet again we are swinging wildly between a 2nd transplant and being discharged. Things turn on a dime around here that is for sure!

Grace has felt kind of yucky today. Her nausea has been increasing over the weekend and she has been getting anti-emetics like crazy. Today her “vacation house” activities were being sick and sleeping. She really didn’t have too much fun. It could be due to a couple of factors. First of all, her TPN has had Zantac in it to control stomach acids. It is a standard for all the kids. With the reduction of the TPN, the Zantac was removed (we don’t really know why, I guess it is just something that is done and hopefully most kids don’t need it anymore). So, she apparently has not gotten the Zantac for a couple of days, so she was put back on it tonight since she feels sick. Also, the nausea could be coming from the increase in white cells . We were told that they may be at work healing her belly and GI tract and that would make the areas more inflamed initially. She could also be having some bone pain from the pressure of the expanding bone marrow. At any rate, after we returned to the hospital tonight, she seemed to be feeling much better. She has been playing a new card game from Aunt Teresa, reading stories, watching movies, and making bracelets for her doctors and nurses from a kit that Aunt Nancy sent last week. Hopefully, she will rest well this evening as she has been really tired the last few days. No doubt from the work her body is doing and from the fluctuating counts.

Thank you so much for your prayers for Grace and all of her brave friends. Please especially remember Evan, Kevin, Andrew, and Ali’s family. They are all having a tough go right now and could use an extra blessing. Also remember Jon as he heads to NYC today for more treatment. Thanks for checking on us.

Saturday, August 04, 2001 at 08:38 PM (EDT)

Day+44. Grace is doing good. Her WBC was a whopping .9 this morning. We were very happy with that number. Her differential still shows lots of new baby cells so that brought her ANC to 558 today. We never really expected to see her ANC this high before Monday, so we have no precise idea of how this impacts the possible second transplant. Our best guess is that we will see the numbers for tomorrow and for Monday and then the decision will be made. If the numbers fall again, we will more than likely get the boost regardless of today’s increased counts. As usual, nothing is ever what it seems nor can it be taken at face value. Dr. Szabolcs told us today that some Drs. discount the weekend labs as not being valid. But her counts recently have all been automated, rather than manual, so it is not like we would be getting different numbers just because the samples are being looked at by a different lab technician. Of course the machines always have a margin of error, so the true test will be the numbers for the next few days. That being said, she had a repeat blood draw this afternoon to check her platelets and a CBC was run as well. This time her WBC was 1.6. But again, we have been told to discount the afternoon WBC as inaccurate. Whatever….it still looked awfully nice on the lab slip. We keep joking that we just want to see her WBC higher than her bilirubin (a little transplant humor there!).

Thank you for your “platelet prayers”. Grace’s platelets were at 74 this morning and 66 this afternoon. Apparently, if you get a lot of platelet transfusions, you can develop mild antibodies to them and begin to reject some donated platelets. Basically, your body recognizes them as foreign and destroys them. We ran into this once before during standard chemo at Brenners. It is a mild issue now but if it worsens, the blood bank can always do HLA typing, much as they do for blood transfusion. So we don’t know if we just got some “old’” or low concentration platelets or if Grace’s body destroyed them, either way it is not a serious issue at this point. (You may recall that our buddy Austin Price has the same type of issue with blood transfusions.)

We have gotten messages and e-mails from some members of our church family letting us know about the many prayers that have been lifted up for Grace and our family during this journey and especially during transplant. It seems that our updates are passed around on Sunday mornings and sometimes announced (we hope that no one is paying close attention to grammar, spelling, spacing, etc. as we are frequently updating quickly and late in the evening!). One of our first thoughts this morning after getting Grace’s labs this morning was “Oh good, they will have a happy update for church tomorrow!” Not a Sunday goes by that we don’t think of our church family and long to be with you. Please know that we are with you in spirit and greatly appreciate all that you have done for us. There is no way that we could have managed the last year, especially the big hurdles like diagnosis, surgery, and transplant, without you. Your multi-faceted support has been overwhelming. God has used so many of our church family and others that follow this site ,(some that we have never met), to comfort us, encourage us, and offer us hope for new mercies each day. We have truly seen the hand of God through your ministry to us. There is no way to adequately convey to you our appreciation for the love you have shown to not only our family, but the families of the others that we have met along the way and asked you to remember in prayer. We are so grateful to be a part of such an incredible body of believers. Even Grace, being the faithful Moravian that she is, has asked if she can invite some of her nurses to a Lovefeast whenever she is better (she still remembers the one she was able to attend on Good Friday). Of course, she has told them to bring their own sippy cups or they will have to drink yucky coffee, but that is another story! She dreams of going to Sunday school and can’t wait to, in her words, “hear lots and lots of Bible stories, color, see kids, and play on the playground!” Anyway, many, many, thanks for all of your prayers for Grace. It is our prayer that each of you be blessed for your unwavering support of our family!

Friday, August 03, 2001 at 08:40 PM (EDT)

Day+43. Grace is doing fine. Her WBC was .5 today but she still showed lots of baby cells on her differential. Her ANC continues to hover around 350. It needs to be greater than 500 to avoid the stem cell boost on Monday. We are little concerned about her platelets. She had progressed to only needing platelet transfusions every other day. She got them yesterday and then she needed them again today. Both times they were really low, between 5-10k. Normal is 150-350k and on the unit they transfuse if they are below 20k. Since they have been so low the past few mornings, labs were drawn again to check her levels. Tonight they came back at 2. (very scary considering she had just been riding around in a van). We had not been that worried because platelets are very subjective. Even normal people have widely varying platelet counts. So you never know how concentrated a transfusion you are getting. Also, once donated, platelets only live a few days (5-7 days I think) so you could be getting a batch that is getting ready to "go out of date" and not really see a big boost. Anyway, now that tonight's labs were so low we are a little concerned as to what is going on. Please pray that Grace's low platelets are not due to anything that is going on in her body, such as internal bleeding etc., but rather is related to the luck of the draw with the donor bags. We have said it before, but we are soooo thankful to everyone who donates blood and platelets. You tend to take them for granted after getting multiple transfusions, but tonight with the platelet count at 2, we were glad to see a bag delivered quickly to our room. These donations save so many lives each day and they definately have saved Grace's life many times in the last year.

We got to go to the vacation house again today. Grace had a good time as usual. She didn't really do any specific activities, she just "hung out." We are looking forward to more of the same down time this weekend. Dad ventured out this morning for a haircut and to stock up on more anti-bacterial hand gel. Mom snuck in a hair cut this week also, the first one in a couple of months. It was amazing how nice it was to leave the hospital if only for an hour. Also, it is hard to be stressed and have too long hair at the same time. It was a definate pick me up for both of us.

Thanks so much for your prayers and for your concern about Grace. Thank you also for your prayers for the kids here especially Andrew and Kevin. Also, for Jon as he travels to NYC this weekend for more post-transplant therapy. Please pray that everything will go smoothly and that his treatment will be pain/hive free. Please also continue to remember Ali's family as her funeral is planned for tomorrow morning. Thanks for checking in.

Thursday, August 02, 2001 at 07:16 PM (EDT)

Day+42. Today has been a good day. Grace’s WBC was .6 and her differential showed a lot of baby cells coming down the pike. However, white blood cells only live a few hours in the bloodstream, so it is impossible to predict if the baby cells will have any impact on tomorrow’s numbers. Her bilirubin was 1.0, the lowest that it has been in weeks. That number was especially good considering that she is now off Heparin. She had platelets today, no surprise there, but all other labs were good. She is still not eating , but thankfully someone invented TPN so she is not hungry and is getting what she needs to heal.

We went on our usual “therapeutic pass” this afternoon. We are not sure if it is therapeutic for Grace but it is for Dad, Mom, and Laura! The afternoons at home are definitely making Grace so much stronger. Out of the hospital, she is able to bend and stretch, and do all those kid things. Laura is also a great motivator. She is learning the art of teasing. She will find an object that belongs to someone else, show them that she has it, and then run away laughing. She is like a naughty little monkey! She is also referring to herself as “baby” these days whenever she wants to be picked up or if things aren’t going her way. She is such a funny little girl and we are so blessed to have her in our lives. It is hard to be too serious or stressed whenever someone has just run off with your toothbrush and is squealing with delight as you chase her!

Thanks so much for checking in and for all of your prayers for our family. Please continue to remember Ali’s family as they prepare for her funeral this weekend. Also, one of the family’s that we have shared time on the unit with, before their recent discharge, is really having a tough go of it. This morning on their website they asked to be included in any prayer list or prayer chain that we knew of. The family of Andrew Bowman, parents Brian and Ellen , and brother Simon, would greatly appreciate all of your prayers for their son and brother. Andrew is feeling just lousy and they so want him to be able to have joy in his life again. Their website is www.caring bridge.com/page/andrewshope if you would like to read more about Andrew or leave a message for his family. Have a good evening.

Wednesday, August 01, 2001 at 06:45 PM (EDT)

Day+41. Today has been a good day for Grace. Her WBC was .4 and her bilirubin was 1.4. Her TPN was reduced to 18 hours today and her heparin was taken away completely. Her bili will be checked everyday again for a while to make sure that there are no problems with the VOD since the Heparin has been discontinued. The plan is still to re-infuse stem cells next Monday if Grace has an ANC of 500 or less. We fully anticipate the second transplant, or boost, to take place.

We had our usual afternoon outing and each day we see an improvement in Grace's strength and stamina. She really enjoys being independent and playing alone while we are at the vacation house. We try to leave her alone for the most part and give her some space, since on the unit she never gets any "alone time." Laura was also a little calmer today although she never lets Mom out of her sight, which is just fine with Mom! Tonight we cooked chicken chow mein for dinner and Grace ate a few chow mein noodles and a little rice. We are trying her back on Zofran, an anti-emetic to see if it will control her nausea and enable her to eat. It's a shot in the dark but maybe it will work.

Late last night we found out the tragic news that Alison (Ali) Lamphier, Grace's friend, passed away. Ali was on the unit in the midst of her second consecutive transplant when Grace was admitted. Ali, her parents and baby brother, Sam had returned to a hospital in Vermont in early July in hopes of controlling the blasts (cancer) that were present in Ali's blood. Ali had been given a poor prognosis but we were all hoping for a miracle for this wonderful family. Ali was such a tough little girl, full of spirit and fight and courage. Her parents were so devoted to her and were always so encouraging to us, especially when we were going through our VOD ordeal. Ali's death has been such a shock to us and our hearts ache for her family. Ali wrote Grace a little note and we have it taped in our BMT room. It has been really hard to look at those sweet little marks and know what intense sadness must surround her family tonight The first two friends that Grace made on the unit, Emily, and now Ali are with Jesus now. Someday we will tell Grace about the remarkable lives of these two special girls. It is an unbelievably sad world for your 3 year old to live in where her friends don't grow up and where she battles each day for her own life. It is not something that we will ever understand or become used to. Please pray for rest and strength for Ali's family in the coming days. Please also pray for the families of Emily, Roberto,Thayden,Robert, and CeeCee who also lost their battles with their individual diseases. Please also pray for the children on the unit and those in the clinic who continue their incredible fight each day. Thanks so much for checking on us and for your faithful prayers.

Tuesday, July 31, 2001 at 06:56 PM (EDT)

Day+40. Grace is feeling good today. Her WBC was .5 today and she got transfused for both blood and platelets this morning. The new blood has given her more energy and that is nice to see. She went 2 days without getting platelets, her personal best, and almost a week without getting blood.We went on our pass today and had a nice time. It is not hard at all to get Grace to return to the hospital now that it seems to be a regular thing.

Alas, our craziness continues...we laughed this morning that everyone reading these updates must think we have gone mad with all the "Hurray, things are great" one minute and "things stink again" the next. One of these days we are hoping to break the two steps forward, one step back mentality. Anyway, after brewing on Dr. Driscoll's words all night and morning, we had the chance to vent this afternoon. He listened very patiently to our frustrations and hopefully we have a plan for at least the next few days. It seems that the lab report from the biopsy indicating 25-30% cellularity was not correct. The final report indicated today that the true result is more like 10-20%. It seems that the sample was very small and that there were differing results depending on the individual slide viewed. At any rate, there is activity there. We are trying not to waste energy on the quality of the lab. It really makes no difference at this point. It seems that the big issue is that Dr. Driscoll wants to give Grace the extra boost of cells. Apparently the other Drs. are not so sure and want to wait and see what happens. The issue is that everyone wants to reserve these 2 bags of stem cells that Grace has frozen in the lab. So, Since Dr. Driscoll is Grace's primary Dr., he has decided to "draw a line in the sand." (These were his words and we would later laugh that he sounded like a character on an old western movie!) The LATEST plan is to wait until Monday and see what her ANC is. If it is 500 or in the ball park, she will be getting the smaller of the 2 frozen bags. If it is well above 500, then we will wait again. This means that her WBC is going to have to go up quite a bit to reach this goal. Dr. Driscoll said that he thought that there was no greater than a 50% chance that this would happen. We really pushed to just go ahead and do the second transplant rather than wasting more time, but we got the feeling that Monday was the earliest that he could get the "group" to go along with this new goal. In retrospect, we felt ok with waiting a little longer because that way we are on middle ground with the varying opinions of our Drs. If the cells come in without the boost, we will be glad that we were able to preserve the extra cells. If they are not in by Monday, then at least the 2nd transplant will have been completed and the endless debating will be over. Unless we see cell growth from the first transplant in the meantime, we will be back to square one in looking for a WBC from the new transplant...probably yet another month in-patient. The only way for us to deal with that is just by not thinking about it right now. One thing that we have learned is that your situation can turn on a dime around here and you can't believe something until it actually happens.

So tonight we really need your prayers.
There are several requests so we will just list them.
1. Please pray that whatever Grace needs,
whether it is a second transplant or not, that God will be in control of this situation and allow the events to take place that Grace needs in order to be healthy again soon. Please also pray that she begins to eat.

2. Please pray for the wisdom of our doctors here to treat Grace and the other patients here.

3. Please pray that Laura will feel secure in the knowledge of our love for her. She is really clingy and stressed from the amount of time away from her parents and sister. Her little life is so topsy-turvey at a time when she is just trying to figure out her place in the world.

4. Please continue to pray for all of the kids on the unit and those that are being seen in the clinic. You get a little immune to how sick these kids really are after being here so long, but they really need prayer. Please pray for Samantha, Evan,Janie,Taeler,Miranda,Hannah,Colby, Bernard, Trey,Jackie, Andrew,Austin C., Austin P., Ben, Ali, Max, Jon, Kevin, Kylie and some new admits that we haven't met yet.

Thanks for your prayers. May God richly bless you for your faithfulness to our family.

PS Today we had a fire drill and Grace said,"Oh no, Curious George must have pulled the fire alarm again!" She keeps us laughing for sure!

Monday, July 30, 2001 at 07:05 PM (EDT)

Day+39. Grace is doing fine. Her WBC was .4 again today and to our surprise she did not need blood or platelets as expected. She is going a little longer each week between transfusions. She got to go to the vacation house again today and we hope to shoot for this new schedule each day. She got to drop one of her antibiotics yesterday and today her pain med was reduced. She doesn't really have any pain that we are aware of but she is literally addicted and has to be weaned off slowly, cutting her dose a little every few days. She will hopefully have her TPN (IV nutrition) reduced to 12 hours this week and she will finally come off Heparin (blood thinner). This will allow her more time off of her IV pole even though her pass length will remain about the same. We will spend the next few days trying to consolidate her med schedule so that most are given during her TPN time.
Her viral cultures including CMV were negative again today.

We have been a little frustrated today because we still continue to get mixed opinions on the plan of action for Grace at this point. We have had GREAT medical care and we really like all of Grace's Drs., but their approaches and styles differ vastly. Just when we think we know the plan, it changes yet again. Last week we were told the plan that we wrote about concerning doing the biopsy, hoping for greater than 5% cellularity, and re-infusing the frozen stem cells if needed. On Friday, after hearing the 25-30% cellularity report, everyone was so excited and said that we would sit tight, wait for cell growth, and probably be discharged with a little lower WBC than the norm. We were also told that the bone marrow is 1-2 weeks ahead of the peripheral blood and so we should expect to see some activity in the next couple of weeks. Then today we were told that if Grace does not have an ANC (ANC is a formula for determining germ fighting ability by looking at both the WBC and the percentage of baby cells/segs and bands coming down the line.) of 500 by next Monday she will get a boost with a second bag of cells. Right now her ANC is probably around 200 and we really don't think a 500 will happen by next week given her slow growth history. Then we were told that the marrow is 4 weeks behind the peripheral blood. We were so overwhelmed and caught off guard, neither of us knew quite what to ask. After mulling it all over this afternoon, I guess we really just want to know "why don't we just go ahead and give her the cells and be done with it?" If the 25% that was on the biopsy is 4 weeks out and any new cells that we infuse are 3 weeks out from the peripheral blood, we feel like we are just wasting another week. It has been 4 weeks since we first saw cell growth and we basically are still at the same numbers. It is hard to constantly switch gears like this. Each doctor has such dramatically different levels for Grace to achieve for success. Last week the word was that because of the high cellularity in the marrow, it could be argued that she did indeed have evidence that she has engrafted. Then today, we are looking at more and more hospital time. When we got back tonight from our pass we were hoping to speak with the attending but he had already left for the night. Hopefully we can get some answers tomorrow now that we have stressed ourselves all day. We certainly do not want Grace released until she is ready to go and do not want her health compromised in any way, but it is hard on our mental health to not have even a sketchy plan in place. At least we feel like that barring any infection that she will get out eventually and things could certainly be a lot worse. We are just going to have to re-group again and take the days as they come.

Thanks for taking the time to check on Grace and for all of you words of encouragement and prayers.

Sunday, July 29, 2001 at 06:44 PM (EDT)

Day+38. Today was another good day. Grace's WBC was .4 this morning. She needed platelets but that is almost an everyday thing. She will probably need a blood transfusion tomorrow. All other labs look good including the fact that all of the viral cultures (including CMV) are negative thus far. The cultures will continue to be watched for growth until the end of the week but at this point we are not likely to see anything.

We got to go to the vacation house again this afternoon on a 4 hour pass. Laura saw us turn into the driveway and was beating on the door as we pulled under the carport. Today we sponge painted and baked chocolate chip cookies. Grace already seems to be moving more steadily. She ate a little more today. A few bites of the cookies that we baked and a few bites of spaghetti and garlic bread at dinner. It was the first time that we have all shared a meal together since June 12. It was so nice to be together! Grace is still on 24 hour TPN (IV Nutrition). After transplant, the kids tongues are slick from all the mucositis and so they literally do not have taste buds (remember when part of Grace's tongue fell off a few weeks ago! Ugh!). We have been told to offer her spicy/salty/strong-flavored foods and she did seem to like the garlic bread. It will be at least 6 months before we can expect her eating to level out. Also, the Drs. are thinking that she may have an irritation in a portion of her small intestines from her radiation and that may be making her continue to feel sick (she still gets sick each day). So it is likely that she will remain on the TPN for a while, but most are discharged with it for at least a part of the day. Not a big problem, just a future hurdle to leap.

It is a rainy night here and Grace is all snuggled up in her bed sleeping. The trips out really tire her. ( Her hemoblobin is also low and that makes you tired as well.) We are hoping that we will continue to be allowed our passes each day. It really makes everything so much more tolerable. Having a few hours of semi-normal makes such a difference!

There are several kids here that could use an extra prayer tonight...Evan,who was re-admitted Fri. for dehydration and other post-transplant problems; Kylie, who was supposed to be discharged last week but developed complications and had to stay; Andrew, who left last week and feels awful-his parents suspect he may have to return; Kevin who is fighting a fungal brain infection; Bernard, who feels lousy from mucositis; Ali, Grace's buddy who went back to Vermont is having unexplained and uncontrolled belly pain, and for Austin who is still battling several post transplant concerns. Please also remember those tough kids who are planning to go home this week that they have a smooth transition; Austin, Miranda, and Ben. It is not hard to become emotionally involved with your neighbors here whenever you have an extended stay. You just want so much for all of these kids to be healed and to be able to get on with being kids. Thank you for your prayers for Grace and for sick children everywhere.

PS It has been fun to finally be able to post some good news about Grace lately. We go back and look at some of our updates ocassionally and they really are depressing at times! Thanks for sticking with us in good times and bad!

Saturday, July 28, 2001 at 06:54 PM (EDT)

Day+37. What a great day! The day started with a .5 WBC on the morning lab slip! Then we were told that going to the clinic as planned may not work out because the last few attempts at letting patients go there after closing was a security hassle. So instead we got a 4 hour pass to go to the vacation house!! Quite a consolation prize! Mom flew around like a crazy person mopping, and spraying anti-bacterial cleaner on everything. Fortunately, the grandparent trio had completed some deep-cleaning in prior weeks.

Grace was so excited! She just squealed as we turned onto Rolling Pines Ave. She had to wear her mask in the van because her WBC is still so low, but she got to take it off in the house as long as she kept her hands away from her face. She and Laura ran after each other like crazy. Grace went out and got the mail, blew bubbles, and took a turn in Laura's swing. She read books, watched a Pooh movie, and played, played,played. She even ate a few crackers. She wasn't thrilled to return to the unit, but it wasn't too bad. She fell asleep on the way back and is asleep now. She is really weak from 44 days total in the hospital but we were encouraged to see her moving around more steadily. You could literally see her spirits lift as we hit the parking deck! It was really nice for us to play with Laura too. Whatever time we have spent with her has been strained because you always wonder what is going on back at the hospital. Laura was so happy to see us drive up. She was laughing and banging on the door. She was asleep when we left to come back so we didn't have to separate from her...she will probably think she dreamed the visit.

Cute Grace story...the other day our minister,Greg, brought some goodies from our church family down to us. (Thanks to everyone for the meals and surprises...You guys are so wonderful!) He brought with him a craft set to make a wreath. You pick out foam children, then glue on clothes, shoes, hair, etc. You then glue them on a cardboard circle to make a wreath. You also glue on hearts and in the middle is a heart that says," Jesus loves the little Children." It is really colorful and pretty and Grace spent several hours making it. She was very particular about making it and wanted each piece to be perfect. It was a great activity and certainly helped to pass yet another long hospital day. She was almost finished with the whole thing, when suddenly she started taking the hair back off of one of the girl figures and one of the boy figures. She glued these two to the top center of the wreath so that they hold hands. Then she said, "This one is me and this one is Jon Powell." (we didn't have the heart to tell her that Jon has hair now!) She was so proud that she had made the dolls look like the kids in her life. I'll bet the craft manufacturers did not count on the wreath being made on the BMT unit! She has it proudly displayed on her door here!

Despite our day's pass, we have no clue when we will be leaving. As a fellow patient's family (Evan) put on their page, "We don't know when we are leaving but we are one day closer!"

Thank you so much for all of you prayers for Grace and for the kids here. As we returned to the unit, we were fully aware of all the kids that did not feel well enough to go out today. We have been so blessed and we pray that all of the other families here will also feel God's mercy and experience His blessings.

Friday, July 27, 2001 at 04:15 PM (EDT)

Day+36. Sorry for the crazy update last night. Once you start an update you are given a limited amount of time to complete it. We did an update and went over on the time and lost it. Then we did a second one and because Grace needed us, we went over the limit and lost it again. So, we just put something on to let everyone know of the great biopsy results.

As you know, Grace's biopsy showed that her cellularity was much greater than anticipated (25-30%). So, yesterday and today has been spent trying to guess why we are seeing so little activity in the peripheral blood. As we mentioned last night, it could be any of several reasons. Certainly her liver is continuing to use WBC as it heals. Having a good deal of proir chemo could have delayed her engraftment as well. A virus could suppress cell growth so yesterday blood and urine samples were sent to the lab to check for CMV and other viruses. It is never good to have a virus at transplant, but CMV is frequently seen and treated successfully here. We asked point blank if we should be afraid and we were told no. If it is CMV and she responds to the meds., we could see her counts rise in a few days. It is one of those situations where you don't know what to hope for. So far her CMV labs are negative, but we will continue to see results come in for the next 7 days as the samples culture. If a virus isn't the cause, then we can assume that she is just late to engraft. Because your bone marrow is about 1-2 weeks ahead of what is found in the peripheral blood, we could see rising counts within the next 2 weeks based on the biopsy results. However, the rise will be slow. We are seeing many .4 and a few.3 lab results this week . We are seeing constant improvements with the VOD. Her belly looks almost normal now and her weight/fluid retention is way down. Her bili was 1.4 (.4-1.2 is normal) on Wednesday and even after receiving a blood transfusion it was only 1.6 today. So that is a lot better.

Whenever the kids are close to discharge, they are given 4 or 6 hour passes to leave the unit and go to their apt. or home in Durham. While Grace is not close to discharge, she may get to go on a mini-pass this weekend. The children's clinic here is so beautiful..more like a museum than a clinic. It is closed on Saturday and the staff here are planning to let Grace go over and see the huge fish tank, mobiles, etc.. Since it is closed, we will be the only ones there and there will be minimal germ exposure. We are all so excited for her to see something different. There is a baby here (that Grace loves) that came the day before us and other than her, we have been here longer than the other patients. Dr. S feels that her mental health really needs the trip and the benefits far outweigh the risks. Hopefully next week she can go to the vacation house for a bit if we see a little rise in her WBC. No guesses at all on a discharge date. Best case scenerio will be a couple more weeks.

Thanks for all of the anniversary wishes for Mom and Dad this week. It was actually nice to be able to spend the whole day together even if it was in the OR. The day certainly made us reflect on how thankful we are to have someone to share this burden with. We have met so many single parents in this situation and that has to be so tough. Maybe next year all of this will be so far away. But for this year, we split a candy bar and were happy to have each other!

Prayer means everything whenever your child is sick and we would like to ask you to pray for another child here. Kevin has an immune disease that is so rare that the Drs. are not even sure what it is. He was transplanted here a few months ago and was re-admitted this week for a possible infection in his brain. He ha a brain biopsy this week and his parents are waiting on the complete results. He may also be facing a lung biopsy next week. His parents are so nice and always ask about Grace even though they are in their own tough battle. I know that they would appreciate your prayers. His web site is www.geocities.com/kevinsitu.

Thanks so much for all of your prayers for Grace and all of those that we request prayer for. We truly feel surrounded by the peace, stength, and hope that you are praying for on our behalf. Thanks for checking on us and have a great weekend!

Thursday, July 26, 2001 at 09:38 PM (EDT)

Day+35.

We've done two really great updates and lost both of them --- UGGGGGGGGGG!!!

We'll leave a quick update tonight and a better one tomorrow!

We were long overdue for some good news and at last we have some! Grace's biopsy showed 25-30% cellularity! A great deal more than the 10% we needed to avoid a second transplant. The report showed that there was both red and white cells present which indicates that the numbers are not falsely elevated by the large doses of GCSF that Grace receives each day. Whenever we heard the news we were too shocked to be excited for it to completely register.

The WBC could be coming up so slowly due to the liver complications, from CMV, or some unknown reason. CMV is a virus that Grace has been exposed to in the past. It remains dormant in your body for life once you have been exposed. It is possible that the CMV virus has become active since Grace has been immunosuppressed for so long.

We will get the CMV test results back tomorrow. If it comes back positive there are two drugs that work very well to combat the virus. If that is the case --- Grace's white count should rise more quickly once the CMV is under control --- hopefully in 4 - 5 days.

Overall this has been a great day. Thanks so much for your prayers. We'll do better with an update tomorrow.

Wednesday, July 25, 2001 at 02:44 PM (EDT)

Day+34.

Updated at 7:15-see below

We do not have any results but Grace's aspirate/biopsy went well. Everything went smoothly and we were very glad to have Cheryl (Grace's nurse) accompany us to the OR. She is such a great advocate for Grace and she made us all feel less stressed. There were a couple of very minor glitches and Cheryl jumped right in and took control of the situation. In the past, Mom and Dad have often been placed in that position so it was nice to be able to focus only on Grace. It is pathetic to say but Grace actually enjoyed her ride to the OR. She was really excited to see something different. We are now back in her room and she is resting and reading stories. Thanks for all of your 1:00 prayers! We will add to this entry whenever we have lab results.

7:15- The initial slide examined shows that there are active cells in the marrow. However, we still do not have an accurate picture of how much cell activity is present. We were very glad to hear that there are at least some cells present.

The aspirate, or liquid portion, of the marrow is smeared onto numerous slides, usually about 10. All of the slides except for one were sent to the official lab for study. Dr. Szaboles and Dr. Driscoll examined the one slide and found there to be some definate cells in each field that they looked at. There was also a small fragment of bone on the slide and it contained a pretty good pocket of cells. Because there is no way to access the volume of the aspirate in relation to it's representation of Grace's total marrow production, all that can be said is that although the sample was not packed with cells, (we would not have expected it to be) it wasn't empty either. When we hear from the biopsy or bone sample, they will know the cell volume because they know the size of the sample taken. We will hear the biopsy results late tomorrow or early Friday morning because it takes a while to de-calcify the bone etc. At any rate, the drs. discussed Grace's case at their Wednesday roundtable and it appears that if the cellularity of the biopsy is 5% or less, Grace will be re-transplanted on Friday with only one of her reserve bags ( the smaller one). The general feeling is that she only needs a small boost at this point, but the drs. will be discussing all of this with us tomorrow night pending the biopsy results. They have also decided to run a battery of viral titers to make sure that Grace does not have an active virus that is suppressing cell growth. It is not likely as she does not have any viral symptoms, fever etc. but they do not want to add more stem cells into a viral environment if that is the case. In the event that it is a virus issue, there are a couple of effective drugs that can clear the virus and we would see growth increase in just a few days. But again, it is not likely that there is a virus present but since she tested positive for several dormant viruses at admission, it is a "better safe than sorry" scenerio.

In any case we are going to be dealing with an immunosuppressed little girl for quite a while. She will most likely be discharged with a lower WBC than is typical for release. We will also have to keep her isolated for longer than we anticipated. We were hoping that she would be ready for the world by the end of September, but we may be tacking a couple of extra months onto that now. She will most likely be very slow to recover compared to other kids who have an auto transplant. It won't be fun but when you compare it to the number of families who see their kids go to the PICU with complications or leave without their beautiful children, it is an extremely small price to pay. We are still concerned but we have so much to be thankful for.

One of the things that we are most thankful for are the prayers that you are offering up each day on Grace's behalf. Thank you so much for your prayers for Grace, for all of the others who are fighting this battle, and for the families who have returned home without their children. May God bless each of you richly for your faith and hope in Him.

Tuesday, July 24, 2001 at 04:57 PM (EDT)

Day+33. Grace is doing fine. Her WBC was .4 today. She has been a little tired today because her hemoglobin is on the borderline for a transfusion. She will be getting transfused in the morning for both red blood and platelets before the biopsy. We have spent today laying the framework for taking her off of the floor to the OR. Things are done a little differently here than at Brenners so we have had to get answers to many questions about the procedure. It is stressful to take her off the floor while her immune system is so compromised, but everyone here has been such an advocate for Grace that things will be as smooth as possible. We feel really blessed to have such a great team of medical staff looking out for Grace and making every effort to address our concerns. The biopsy/aspirate is scheduled for 1:00 tomorrow afternoon. Please pray that the logistics of taking her off the floor will go as planned and that she will not be exposed to any infection etc. Please also pray the procedure will be without complication and that we see activity in her bone marrow. We will have some initial results tomorrow evening and the final results will be reported in 24-48 hours. We are a little nervous but are looking forward to knowing what we are up against. We will post just as soon as we know something.

Today Nana came to babysit Laura for the next 2 weeks. Pawpaw and Mawmaw returned home for a well deserved break.
Speaking of needing a break, today the drs. came around a little later than usual because it has been really crazy on the unit; kids being admitted, re-admitted, and discharged etc. So, Dad did not get out of the hospital until much later than expected. He had not had a shower and was also pretty tired today. We didn't think our fatigue was showing, but Dr.S told Dad before he left the room,"Get some sleep tonight. You might want to drink a few beers as well!" Dr. S is Polish and has a pretty thick accent and a great personality. It was just so funny to hear him say that! It gave us a good laugh.

We would also like to ask that you remember a child on the unit in your prayers as well. Evan is a beautiful 6 year old who was diagnosed with a degenerative metabolic disorder in recent months. He was transplanted here in May and left the unit shortly after we were admitted. He returned to the unit after only being home for days and required surgery to place a feeding tube. He is recovering from the surgery but it is very slow and his family is growing understandably weary. His disease is a particularly cruel one and Evan is in pain much of the time. Please pray for Evan's healing and recovery and for his family's strength to care for him. His website is www.caringbridge.com/nc/evan. Evan's mom grew up with a friend of ours from our former church in Statesville. We know that they would greatly appreciate your prayers.

Thanks so much for your prayers and support.

Monday, July 23, 2001 at 04:09 PM (EDT)

Day+32. Thank you so much for all of your words of encouragement and prayers. Grace's WBC situation is unchanged but we are feeling ok with everything. We have been spinning a little out of control and so we know that the acceptance of our circumstances and the peace that we feel is a direct result of the prayers of so many.
Our updates have been a little scattered the last few days as things seem to change minute by minute. We have finally figured out how to add info to the day's entry. If we have anything to add we will change the time on the update as we did on Saturday. We hope it will not be too confusing!

Grace is feeling pretty good. Today is the first day in 39 days that she has not gotten sick. She is nibbling a few Cheerios and can keep down juice. Today she kept down some milk as well. She has been able to be unhooked from her iv pole for about an hour per day since Saturday and it has helped her spirits. She continues to get stronger although her muscles have taken quite a hit. She is wobbly but determined to do the things that she wants. Her mouth is so much less full and she is back to her non-stop talking. She is beginning to enjoy games and crafts as well. We told her on Saturday that we were probably going to be here for a long time and she really seems to have accepted it. We are trying to make things as fun as possible. We had not given the girls their birthday gifts from us because we thought that Grace would be discharged a few days after their big days. Our thinking was that she would enjoy getting her gifts so much more once she was out of the hospital. So, we are going to let Laura and Grace open a gift each day whenever Laura comes to visit. Today they will exchange their gifts to each other. Grace is giving Laura a set of zoo animals and Laura is giving Grace some play food for her kitchen.

We will have the bone marrow aspirate and biopsy at 1:00pm on Wednesday. All of the results will not be in until Friday. If her marrow is at only 5% or less cellular (active) then she will receive her last reserve bags of cells from the freezer. If the cellular level is 10% or greater then we will wait for growth and avoid the 2nd transplant. She would only be getting the infusion of cells and no more chemo. Her only side effect will be sleepiness from the pre-meds and the bad taste for a day or so. In either case, we anticipate being in-patient for at least another month. The drs. are optimistic that she will engraft but say that it will be slow. The problem is due to the high doses of prior chemo and because they theorize that certain chemicals were emitted into her body from the VOD that cause issues with engraftment. Right now she has about a 50/50 chance of avoiding the second transplant. Her time in the hospital will be about the same in either case, we just hope that we can avoid using her last reserve cells in the event of a relapse.

Please pray that the bone marrow aspirate and biopsy will show cell activity and we can avoid the second transplant. Please also pray that Grace stays free from infection and fevers while she is so immuno-compomised. If she develops infection, Mom and Dad will be getting central lines placed to donate granulocytes (mature WBC) to sustain her. Thank you for your faithful prayers!

Sunday, July 22, 2001 at 06:36 AM (EDT)

Day + 31

The rollercoaster has plummeted again….Grace had another 0.2 WBC at her 4:00 AM blood draw. It looks like the 0.6 from this afternoon may have been falsely elevated. All of her other counts were much lower this morning as well……

Please pray that Grace will continue to be fever and infection free during this extended period of immunosuppression. We have resigned ourselves to the fact that we will be going forward with Wednesday’s bone marrow aspirate. Wednesday is Mom and Dad’s ninth wedding anniversary, so maybe we’ll get a gift of some good news!

We are very discouraged. This is not at all what we expected when we brought Grace in for this final treatment. This docs say that this is somewhere in the realm of normal for an autologous transplant, but we never discussed engraftment taking this long in our extensive pre-transplant consultations.

We really need to keep upbeat so we can encourage Grace at this tough time. She wants to go home so badly. While you are praying for Grace, please keep all of us in your prayers as well.

Sunday, July 22, 2001 at 06:36 AM (EDT)

Saturday, July 21, 2001 at 12:40 PM (EDT)

Day+30.
Updated @ 3:15 see below

Grace's WBC is a .2 again. We are very afraid that she is not going to engraft. We could be here for a very long time. We really need your prayers in the coming days that Grace's cells will grow. Thank you for your prayers.

Day+30 @ 3:15. That was some good praying guys! Grace's afternoon WBC was .6! Will this roller coaster ever slow down and let us off!

Yesterday, Dr.S tells us that he is thrilled with the .5 from Thursday and we probably will not have the aspirate. He tells us that we can hope to go home (vacation house) in a couple of weeks. Then today, after the .2 labs this morning, Dr. Driscoll comes in with plans to do the aspirate and discusses a second transplant. He tells us that we are likely to be here another 5-6 weeks. Now not only did her WBC rise, she seems to be making a few platelets, the last blood component to come in after transplant. So we are baffled to say the least. Who knows what tomorrow will hold? We can't even guess anymore. All we can do is trust in God's plan to lead all of us through this ordeal. We know that He is meeting Grace's needs; it is just so hard for us to not be in total control of the situation. Thank you all for responding to our desperate cries for prayer. You are the best! We will not have another lab result until tomorrow, so for now we will enjoy the top of the hill on this roller coaster ride!

Friday, July 20, 2001 at 09:02 PM (EDT)

Day+29. Today's WBC was a disappointing .3.
We were so hopeful that we would be able to maintain yesterday's .5, but it was not to be. Dr.S felt good about yesterday's WBC and said that there was a good likelihood that we would not need the bone marrow aspirate next week. He said that since Grace had shown the ability to achieve a .5 then he felt that her counts were coming, just at a snail's pace. Her activity level was good again today. She ate portions of two popsicles and one yellow M&M. She is interested in food but eating is painful as her GI tract is not healed yet because of the lack of white cells. She is talking more each day and that is a joy. The trick squirting camera is still a favorite for teasing her nurses. Her bili was only 2.2 in spite of yesterday's blood transfusion so that was great news. It seems that the VOD is continuing to resolve. She continues to get platelets many times a week.

We are not quite as worried as before after yesterday's count. We feel more confident that the WBC is coming. We just wish that we knew when it will rise! One bad side effect of Grace's improved energy level is that she is well aware of where she is now and wants to go home very badly. We don't blame her because we are feeling a little frustrated too. It is hard to keep taking 2 steps forward and one step back everyday. I think that we had prepared ourselves mentally for what to expect and now that we have changed courses we can't seem to get ourselves back on track. I don't think that there is any way that you can prepare yourself for what you see and hear on a daily basis on this unit. The fight that these kids face and often win is amazing. The resolve of their parents and families is also amazing. We have gotten such incredible support from so many. It is often as if the successes and failures of each individual child is a group effort. Whenever other families ask about Grace's progress. they are not simply being polite; they truly want to know and wish her well. We, in turn, feel a similar burden to pray often for the others here. It is such a blessing be surrounded by such loving and caring people. Please join us in praying for these heroic kids and their families.

A special thanks to all those who continue to pray for Grace, send us cards, messages and surprises. Thank you also for the frozen meals. They are so helpful for the grandparents who are here to care for Laura. Dad, MawMaw/PawPaw, and Laura enjoyed a visit from Janie (church member) and two other ladies (Marlene and Debbie) from our community. They were on their way to a conference and stopped by to drop off some treats for the girls and us. Thanks so much. Thanks also to Amy who dropped off frozen meals a couple of weeks ago. Thanks to Aunt Rene for the meals you sent (Laura loved the chicken salad). Thanks to Aunt Tammy for the constant stream of suprise packages and to Aunt Teresa for all of the pillowcases and letters!You three are the best aunts that anyone could ever have! Grace and Laura are so blessed! The Uncles and cousins aren't too shabby either! Thanks to everyone who is taking care of our house, especially our lawn. Thanks to our neighbors in Durham who are constantly mowing our yard and being so kind. Thanks for all of the birthday presents for the girls that continue to arrive. We love and miss everyone! We are so blessed to have such wonderful family and friends!

Please keep praying for cell growth and no infections!!! Thanks for checking in! Grow, Cells, Grow!

Thursday, July 19, 2001 at 09:56 PM (EDT)

Day+28. .5! Grace's afternoon labs showed a .5 WBC! Mom literally wept whenever the nurses told her what the results were!

Grace got her first "extra" dose of GCSF this morning at 6:00am. Her 4:00am WBC was .3. We were happy with that as it was the third day in a row that we had not had .2. Her bilirubin also fell to 1.8. Her hemoglobin was low and so she got a transfusion this morning.

Grace woke up full of energy. Usually we have to drag her out of bed and today she sat right up ready to play a game. After her am medical routine (mouthcare, dressing change etc.), she was ready to go into the hall. She played for over an hour, riding the trike, walking, and playing basketball. After returning to the room, she actually ate part of a popsicle and KEPT IT DOWN! She played all afternoon! We were hopeful that something was going on in the WBC realm, but were afraid to hope. We kept trying to gauge if her counts were coming up or if the energy was from the blood transfusion. We had an afternoon visitor from Jennifer, one of the clinic nurses from Brenners. Grace remembered her and was so glad to see her! She even took her "picture" with her trick water squirting camara. It was great to see a face from home. We have had great care here and truly feel that many of the staff are like family, but Brenners will always be "home". It is there that Laura spent the first year of her life and there that Grace was given a second chance at enjoying her life. It was great to get updates on the families that we met there. We are looking forward to visiting with the staff there this fall!

We thought that Grace would surely crash this evening but she visited with Laura, MawMaw, and PawPaw. She then played with Mom and Dad until 9:30. She was awake for 12 hours today which is part of the reason that we are so late updating. It has been so wonderful to see her true self. She has even been suctioning her own mouth today so that she can talk more clearly.

We are anxious to see what Grace's WBC will be in the morning. They could zip up or they could continue to hang around this range. Either way, the likelihood of going through with the bone marrow aspirate next week has decreased with this afternoon's lab results. We pray that today's .5 is an indication of good things to come. We greatly appreciate all of your prayers for Grace's WBC and general recovery. Our God is so merciful. Thank you for checking on us. We will try to post a little earlier tomorrow!

Wednesday, July 18, 2001 at 10:04 PM (EDT)

Day +27

Grace has felt pretty well today. She was able to spend about 35 minutes riding her trike and walking today. She also spent some time on Mom’s lap in a rocker on our front porch (the hall outside our room). She has vomited more today…but she’s also had much more to drink. She’s kept about half of it down – not bad. Laura has started back with her daily visits in the evening. Grace seems to enjoy her more everyday.

Every Wednesday all the BMT docs have a meeting to discuss all the patients. Today they made some decisions based on Grace’s current status –

1. No one is panicked (on the transplant team anyway)
2. Starting tomorrow Grace will double her dosage of GCSF a drug that stimulates the bone marrow to produce white cells
3. If we have seen no improvement by Tuesday, Grace is scheduled to have a bone marrow aspirate. This will tell much more accurately how much the transplant has engrafted. The aspirate will be cancelled if we see even a slight improvement by Tuesday.
4. Based on the result of the aspiration a decision would be made whether none, some or all of Grace’s remaining frozen peripheral stem cells will be transfused (ie a second transplant). Dr. Szabolcs said that this is a great option if we need it, but he doubts that things will progress that far.
5. Dr. Szabolcs has trained at MSKCC in New York. They see more Neuroblastoma cases than any other facility in the world. He said, based on his experience there, that it is not that unusual to see a case like Grace’s. The N7 chemotherapy protocol for Neuroblastoma is extremely intense, but necessary for the best outcome. It oftentimes batters the marrow so much that even an ABMT requires a lot of time to engraft.
6. Grace is doing very well on all other fronts. The docs continue to tell us that she is amazingly tough and they can’t believe how quickly she is overcoming her VOD. Due to this they will be willing to discharge us with a lower that normal white count and ANC. We will have to be even more cautious than the standard ABMT discharge.

A couple of days ago we were worried to the point of constant panic. We are still very concerned and can’t help but worry, but we have been able to leave the state of panic behind us for now. That is only possible due to the many, many prayers that have been lifted up for Grace and for all of us. Thanks so much for continuing to support us through prayer. Please continue to pray that Grace’s WBC will increase so she will not be vulnerable for much longer, so we can avoid the aspiration and another transplant, so we can be discharged, and so we can eventually RETURN TO OUR NORMAL LIVES IN ADVANCE!!!

Another prayer request - Robert, a young man on the transplant unit, has returned to Greenville, SC. He is only expected to live a few more days. Please pray for Robert and his family.

Wednesday, July 18, 2001 at 10:04 PM (EDT)

Day +27

Grace has felt pretty well today. She was able to spend about 35 minutes riding her trike and walking today. She also spent some time on Mom’s lap in a rocker on our front porch (the hall outside our room). She has vomited more today…but she’s also had much more to drink. She’s kept about half of it down – not bad. Laura has started back with her daily visits in the evening. Grace seems to enjoy her more everyday.

Every Wednesday all the BMT docs have a meeting to discuss all the patients. Today they made some decisions based on Grace’s current status –

1. No one is panicked (on the transplant team anyway)
2. Starting tomorrow Grace will double her dosage of GCSF a drug that stimulates the bone marrow to produce white cells
3. If we have seen no improvement by Tuesday, Grace is scheduled to have a bone marrow aspirate. This will tell much more accurately how much the transplant has engrafted. The aspirate will be cancelled if we see even a slight improvement by Tuesday.
4. Based on the result of the aspiration a decision would be made whether none, some or all of Grace’s remaining frozen peripheral stem cells will be transfused (ie a second transplant). Dr. Szabolcs said that this is a great option if we need it, but he doubts that things will progress that far.
5. Dr. Szabolcs has trained a MSKCC in New York. They see more Neuroblastoma cases than any other facility in the world. He said, based on his experience there, that it is not that unusual to see a case like Grace’s. The N7 chemotherapy protocol for Neuroblastoma is extremely intense, but necessary for the best outcome. It oftentimes batters the marrow so much that even an ABMT requires a lot of time to engraft.
6. Grace is doing very well on all other fronts. The docs continue to tell us that she is amazingly tough and they can’t believe how quickly she is overcoming her VOD. Due to this they will be willing to discharge us with a lower that normal white count and ANC. We will have to be even more cautious than the standard ABMT discharge.

A couple of days ago we were worried to the point of constant panic. We are still very concerned and can’t help but worry, but we have been able to leave the state of panic behind us for now. That is only possible due to the many, many prayers that have been lifted up for Grace and for all of us. Thanks so much for continuing to support us through prayer. Please continue to pray that Grace’s WBC will increase so she will not be vulnerable for much longer, so we can avoid the aspiration and another transplant, so we can be discharged, and so we can eventually RETURN TO OUR NORMAL LIVES IN ADVANCE!!!

Another prayer request - Robert, a young man on the transplant unit, has returned to Greenville, SC. He is only expected to live a few more days. Please pray for Robert and his family.

Tuesday, July 17, 2001 at 03:06 PM (EST)

Day+26. Grace is doing good. Last night's experimental blood draw, post GCSF infusion,did not give us the results that we had hoped for. Her WBC was only.2. However, her 4am lab was .3. So, a little better. Her bili was calculated by mistake but is was really good. It was 1.9. That was a drop from 2.9 the previous day. So, we were happy with that. All of her other labs are fine. She has seemed a little more tired today and we are worried that she is a little depressed and is sleeping as an escape. If we let her, she will just lie in her bed and look at the ceiling. Each day we make a tremendous effort at entertaining her! It has got to be so hard for her to be stuck here for so long. She loves to be outside and it has been 33 days since she felt sunshine on her face. Hopefully, she will one day soon.

We have tried to remain optimistic because things could be a great deal worse. She could have an infection or could still be battling VOD. Her nurse last night,Cheryl, is very encouraging and said," You know, we just don't know what God's timing in all this is. Maybe she needs the extra time to prevent leaky lungs or maybe she does need that extra bag of stem cells to prevent a complication. We may never know the reasons. We just have to wait and pray." There is something reassuring about having someone both caring for your child and ministering to your needs. As she sent off Grace's labs last night, she said a little prayer. It gave us hope that God really is in control of this situation. Thanks Cheryl! You are the best!

So for now, we will just wait and pray and ask you to do the same. Grace has made it through so much because of the strength of your prayers and your faith. Please continue to pray that we will see cell growth soon and that she doesn't develop an infection, so that Grace doesn't have to go through anything else. Thanks for checking on Grace! Grow, Cells, Grow. Please Grow soon!

Monday, July 16, 2001 at 04:37 PM (EST)

Day+25. Grace continues to show small improvements each day, but we really need your prayers. Her WBC continues to be .2 today and we are starting to get very worried that she will not engraft. We have been told that her damaged liver is burning up her white cells. Over the last few days we have started to become increasingly worried as her WBC stays the same, except for the one .4 glimmer of hope from last week. We spoke to Dr. Szaboles today about our concern and he developed a plan of action. Each night Grace gets an infusion of GCSF, a growth factor to stimulate the marrow. She got this as a shot from Mom and Dad during standard chemo. Labs are then drawn about 10 hours later to check counts. If the labs are drawn closer to the infusion of the GCSF, the WBC will be greater. It is not a false number, but it can be misleading when drawn close to infusion because it is not an accurate measure of the marrow's function over a 24 hour period. Anyway, she will get the GCSF tonight at 6:00 and we will draw a lab at 8:00 to see if there is any additional activity. Hopefully we will see at least a .4. Please pray that this will be the case. Then we will sit tight until next Monday (day+32). If at that time there has been no change in her WBC, she will have a bone marrow aspirate to determine how well the marrow is functioning. The marrow makes cells a week or two before releasing them so we can see at what capacity it is working. If the marrow is not working well, there is a possibility that Grace will receive her back-up bag of cells from her harvest. She would not have the chemo, only the transplant. We know that she is making cells as evidenced in the healing of her mouth sores, she is just not making enough to sustain her.

Needless to say, we are, yet again, living on the edge. We had just started to feel better about the VOD and now this. Frankly, we are so scared. We desparately need your prayers that Grace's marrow will recover and that those stem cells will set up shop and begin to produce some WBC, hemoglobin, and platelets. Please pray also that she will not get an infection while her counts are so compromised. We are so worried about Grace.

Grace does show small improvements each day. Today she went off narcotics and while she is still on other pain-relievers, she has been comfortable. She drank some gatorade today without throwing all of it back up. She is also getting faster on her tricycle and walked without holding Mom or Dad's hand. She was so proud! She said,"Look at me!" She did get a bilrubin today which was increased to 2.9, but it was expected due to a transfusion over the weekend. All of her other labs continue to be fine.

Thanks for checking on us and for praying for Grace.

Sunday, July 15, 2001 at 04:10 PM (EST)

Day+24. We have had a good day. Grace's WBC was .3 this morning. We did not get a bilirubin because she will now have that lab drawn only on Monday, Wednesday, and Friday. Grace went to bed early last night and so she actually got up around 10:00 this morning. She has been sleeping until noon and then we have been waking her to get a bath etc. She has had improved energy and exercised without a fuss today. She rode the trike, walked, and her favorite past-time; sat in a rocker in the hall and watched the people go by. After returning to her room, she played some games with Mom and made some bead necklaces. She has talked a little more as well although she still can't really swallow her saliva yet and talking is difficult. The little glimpses of her true self keep us going each day.

Since Grace went to bed so early last night, Mom skipped out a few hours early. She got back to the vacation house just in time to put Laura to bed, something that she has not been able to do since June 12. Laura has been visiting Grace almost every afternoon now and we treasure having a few minutes that we are all in the same place. Grace still does not want to see anyone else, but Laura can always make her smile. This morning, Laura wanted to get in the van, a favorite play spot these days. Instead of pretending to steer, she wanted to get in her car seat. Once there, she said,"Go, Baa-Baa." (Baa-Baa is what Laura calls Grace). She has it all figured out that visiting Grace is the only place she goes these days. We keep her at the vacation house and not at any stores etc. so that she will not get sick and possibly spread it to Grace. It is a dull life for her and we are looking forward to giving her some new experiences.

Thank you for your continued prayers for Grace's healing, most especially the ever elusive white blood count! Grow, Cells, Grow!

Saturday, July 14, 2001 at 09:44 PM (EDT)

Day +23

Today has been pretty good. Grace was awake for about 8 consecutive hours. She spent a little time on her trike and walking. She sat up in a chair and worked on crafts for quite a while. Her white count is still a 0.2, but at least it is hanging in there. Please continue to pray that we will see a dramatic increase soon. Her bili went down significantly to 2.0. The docs are comfortable enough with her VOD to go from daily liver chemistries to a MWF schedule – so we’ll only have bili updates three times a week. Dr. Schleback (SP?) started two weeks of inpatient service today. He seems very nice and also believes that Grace’s marrow is producing lots of white cells, but her inflamed liver is quickly consuming them.

Grace asked for a Happy Meal today. Dad brought it over when Laura came for her visit. Grace was so excited, but she puked it all up after a few bites. We’re thrilled that she’s interested…..maybe her tummy will heal soon and she can keep something down! For now we will continue to count on TPN for nutrition.

Thanks for your continued support and prayers.

Friday, July 13, 2001 at 04:21 PM (EST)

Day+22. Another uneventful day. Grace's WBC dropped back to .2 again today. We were so hoping that we would see it continue to rise. It is common to see it bounce around at this stage, we just wish that it would start to bounce UP instead of DOWN all the time! Her bili rose a little from 2.4 to 2.5 but it is not a concern at this point. She was taken off of her continuous pain meds yesterday but they had to be started again last night because she kept waking up due to being uncomfortable. We will try again over the
weekend to wean her off the narcotics. Overall she is doing ok. She will exercise if we encourage her and today she painted a little and did a few puzzles. One of her biggest problems related to the low WBC is that she constantly has a mouth full of fluid. She doesn't want to swallow because then she gets sick. She hates the suction and so we have to try to wipe out her mouth periodically, which she hates as well. Everytime she tries to talk she gets choked, so she just nods her head a lot. It is no fun not being able to hear her talk to us.

I think that we had gotten our hopes up yesterday with the .4 WBC that we were turning a corner. All along we have been told that we would hopefully be out-patient by 30 days and that is looking very unlikely. Of course we want to be discharged but that is not our main worry. Everyday that she does not have a WBC is another day that she is at increased risk for infection. We also really want her off some of the antibiotics that have potential for serious side effects. Realistically we are never going to stop worrying about Grace's health, but we have a lot more to worry about being in-patient. It is hard to believe that it is our 5th weekend here. The weekends are always a little harder because we really miss our family and friends, especially seeing our niece and nephews. We have SO MUCH to be thankful for especially with the VOD resolution, but sometimes it is hard to avoid being a little down. Today we are trying really hard to look at all the hurdles that Grace has overcome so far but the ones ahead seem so big! We are trying to keep in mind that it was only 2 weeks ago today that we were hearing horrible news and today Grace was painting. I guess if we could choose between then and now there would be no contest. We are really having to struggle with our own patience!

On a positive note, Max was discharged today. He is a really cute 5 year old and he has been here several months. We are really going to miss him and especially his Mom. She is always so up-beat and encouraging! Good luck Max. Our prayers go with you!

Please pray that we will see an increased WBC soon! Thanks for celebrating the good days with us and for listening to us complain and whine whenever we are weary!
Grow, Cells, Grow!

Thursday, July 12, 2001 at 03:24 PM (EST)

Day+21. Hallelujah! We have more cells!!!!
Grace's WBC was up to .4 this morning! Two of our favorite nurses, Jenn and Cheryl, came in with big smiles and good news! It is so nice to have such great moral support. We have a long way to go but for now we can breath a BIG sigh of relief that her counts are heading up. Her bili fell a little more to 2.4. All other functions continue to look good including no sign of fever all week! We are thrilled to say the least!

We continue to see Grace getting stronger each day. The improvements are subtle but very real. Last night she actually played. She drew some snakes to scare the nurses. She played with a "Hello Kitty" eraser set that Darla, Mom's friend, sent her from San Francisco. And she played with a really cool Bible Bingo set that someone from our church sent her for her birthday (Sorry that we don't know who but some of the gifts didn't have names and Laura has been "enjoying" some of the cards as well. We could tell you every wedding present and who it was from 9 years ago, but this experience saps your short term-memory.) Anyway, she sat in a chair and punched out the pieces. Then she played several games with Mom and Dad. It was just the right activity level and it seemed to boost her morale. A special thanks to the mystery gift giver. Seeing Grace smiling and enjoying herself after such a rough time was priceless. She also has played several rounds of Bible Bingo this morning! Hopefully now she will be able to enjoy some other birthday presents that we have been saving for her and the boredom will stay under control! A big thanks to everyone for all of the surprises, cards and prayers!

As her WBC comes in, the risk of complications will continue to diminish. Assuming that she develops no infections etc., she will slowly begin to come off some of the meds that she has been on. (At one point, she was on about 20 different ones a day and some of them were multiple doses. We are so thankful to have such good nursing care to keep it all straight!) Today she went off of the continuous infusion of pain meds. She still has her "button" in case she gets uncomfortable. She will come off all the narcotics in the next few days. Her discharge date will be entirely dependent on how quickly her counts recover. It is not a specific WBC but rather a formula that looks at her WBC and the % of baby cells that are being made. This is called her ANC and it will have to be 500 for 3 days in a row in order to be officially engrafted. Her counts will continue to bounce around but we are hopefully looking at no more than 2 more weeks in-patient. Only time will tell.

Thank you so much for checking in and for your dedication to praying for our Grace.

Wednesday, July 11, 2001 at 03:53 PM (EST)

Day+20. Today has been pretty dull, which is always good in the hospital setting. Grace's bili level went down slightly to 2.5 today. She is probably going to need a blood transfusion in the next 24 hours so it may rise again. Her kidney function looks great and her weight was really down today as she is retaining less fluid. She did not sleep quite as well last night possibly because of the decrease in pain meds. Because of this, her pain meds were not cut back today. Hopefully she will be able to come off the continuous infusion and only have her "button" in the next few days. The really great news of the day is that Dr. Martin said today that he really doesn't expect to see any further complications from the VOD at this point. We had felt like everything was going well but it was nice to actually hear the words spoken by an MD. So now we are just waiting on a WBC. Over the weekend Grace was at .3 for a few days but now we are back at .2 again. We know that she is making cells and that they are at work repairing the damage and that the drs. are not worried, but we are a little stressed about the lack of cell growth. If we could just see the numbers go up to a .4, we would feel better. While it is very unlikely with the type of transplant that Grace had, there is such a thing as failure to engraft or failure for the cells to grow. After a month of waiting for some cell activity, your imagination begins to run away with you. I guess now that the VOD seems to be clearing up, we are looking for something else to worry about. Please pray that those cells will grow, grow, grow and that the liver will be all healed so that we can actually see a bigger number on paper!

Please pray also for Andrew who is having a lot of vomiting and the drs. can't seem to find the source of the problem. Please pray for Ben as well. Ben had the same cancer as Grace and is now at the hardest point of transplant with nausea and fevers. His parents are understandably worried. Please also pray for the incredible medical team here. Today they watched another family leave without their child. (It was a child that was already in PICU when we got here. The same family has lost 2 other children to the same genetic disease). The staff takes such emotional risks by caring for such sick children and they do it with such a commitment. We have been so blessed to have such good care. On the weekend that things were looking bad for Grace, VOD wise, we had a nurse that we had never had before. It was truly the hand of God at work. Macy is one of the funniest people that we have ever met and she kept us distracted all weekend. She literally did stand up for 2 days to keep us from falling apart. She stopped by to see Grace today, on her day off. Grace really likes her and so do we. She calms our fears and makes fun of us often which we need right now. Grace also loves her "boy nurse", Andre and we are starting to get closer to many others. We are looking forward to Dr. Driscoll's return next week. He is currently on a medical/evangelical mission to Ecuador (sp?). He has been doing the trip for about 6 years and hopes to help establish a full time clinic there.

Thanks for all of your prayers, messages, cards, surprises, etc. They help us to feel a little closer to home. Thanks for checking on Grace!

Tuesday, July 10, 2001 at 05:13 PM (EST)

Day+19. Grace continues to make improvements. Today her bilirubin went down a lot. On Sunday she was 3.8, yesterday was 3.4, and today it was 2.7! We were so excited. It was the first time that it has had a significant drop. Her hemoglobin is dropping as well and so if she gets transfused tomorrow, we will probably see a rise in bili again, but at least we won't be as worried about it this time. The final report from the ultrasound showed that basically the main portal vein shows bidirectional flow indicating continued stress and the anterior branch of the right portal vein has reversed flow or VOD. The good news is that the left side appears to be compensating for the loss and the hepatic veins and arteries are continuing to function as well. It is expected that the damaged areas will recover but it may be months. Even then there will always be some scar tissue there. If Grace continues to show improvement in other areas, it shouldn't be something that requires her to stay inpatient. There was also a great deal less fluid in her belly indicating that the liver is working even if at a slower pace. All indications are that all of the white blood cells that Grace is making are lasting about 5 minutes because they are rushing to repair the inflamed liver area. She is simply using them as fast as she is making them. Fortunately, she is making them. Whenever the damage gets somewhat repaired, we should see those counts coming up and be able to go to the vacation house. There are just no guesses as to when that will be. We are also watching her belly continue to shrink. Her pain meds were lowered again today and we hope to have her off of all narcotics in the next few days. She is awake so much more now. That is really nice to see!

Laura is doing good as well. She has been coming to visit Grace again and she really enjoys getting out. She loves Grace so much and is constantly trying to grab her and loves to pat that bald head! Grace was excited to see her walking. Laura adds new words daily, it seems, with the latest being "duck". We are really looking forward to being discharged so that we can play with her more. We have a lot of work ahead of us after months of Grandparent attention/spoiling! Laura is a very agreeable little girl but now whenever we tell her "no-no", she just smiles the sweetest little smile and bats those eyelashes over those big baby blues as if to say," this works with PawPaw/Mawmaw/Nana." Of course now that we are in "transplant mode" it works with us too!

Thanks so much for your continued prayers for Grace and the other children here (especially for Ali who flew home to Vermont today!).

Monday, July 09, 2001 at 07:44 PM (EST)

Day+18. Different day, same story. Grace is doing fine. Her bilirubin level fell from 3.8 to 3.4 this morning, much to our relief. Her belly girth and her liver size continue to shrink. Her kidney function showed more improvement today. Today's ultrasound showed no change in the VOD. We did not expect to see improvement because that will take several months, but we were glad to see that it had not gotten worse. There is still reversed bloodflow indicating occluded veins. They did find that there is a great deal less fluid in her abdomen, which is great. Her gall bladder, however, is still filled with sludge from not eating. The walls appear to be thick as well. It may clear up as Grace begins to eat, particularly fat-filled foods. If it does not clear, she may have to have her gallbladder taken out. In all likelihood, this would not happen until several months out of transplant. At any rate, it seems like a minor concern right now compared to last week's VOD scare. It is one of those things that concerns us, but nothing to get too upset about right now. In a normal world, we would be going nuts at the suggestion of our child having surgery, but now we are like, "oh, gallbladder, that's not too bad."

Grace's pain meds were reduced by about 30% last night and she has done quite well. We hope to see them turned back more in the next few days. She has been so spacy and being on less narcotics will help. She has been riding her tricycle each day although she is still not up for a lot of activity. Whenever a patient is discharged from the unit, the other patients and staff meet at the entrance to the unit to throw confetti and wish them well. While there have been several discharges since we have been here, Grace hasn't felt up to joining in. Today, a baby girl was discharged and Grace wanted to go out to throw confetti. It was fun for her and she gave a few smiles. She is kind of at a hard place right now because she feels good enough to be bored but too bad to really play. We just hope that the next few weeks will pass quickly. It seems hard to believe that Grace has already been here a month now!

On a totally unrelated note, we forgot to brag that Dad de-accessed Grace's port last week. Andre, Grace's nurse didn't want to do it because frankly Grace's screams frighten him. He was jokingly offering the other nurses $ to do it and since we want to learn to do blood draws from her port anyway, Dad offered. It went well but Andre didn't keep up his end of the bargain and pay up! It is Mom's turn to do it next!

Thank you for your prayers for Grace's healing. Please continue to pray for improvement on the VOD front and for CELL GROWTH. Her WBC just seems to keep bouncing around the .2 and .3 mark. We are so impatient and want to see big drops in the bilirubin and big leaps in the WBC. We are just never satisfied! We are starting to realize that we are very unrealistic but it is hard to not wish that Grace would just bounce back immediately! Please also pray for the family of 2 year old Roberto who died Sunday afternoon. He had been through 5 transplants attempting to cure an immune system problem. He had the "boy in the bubble" syndrome where he could not survive outside of a protected environment. His family had moved here from Mexico for treatment. They are a sweet family and would appreciate your prayers for strength in the coming days.

Thanks for checking in.

Sunday, July 08, 2001 at 03:28 PM (EST)

Day+17. Bilirubin, Bilirubin, Bilirubin! If we never heard that word again we would be very happy! Just when we were beginning to feel good about Grace's progress, her labs today showed a jump in bilirubin from yesterday's 2.5 to 3.8 today. Not good. However the big picture is still ok so we are trying not to get too discouraged yet. Grace has shown a trend of elevated bilirubin after blood transfusions, which she had yesterday. Bili is a by product of dying red cells and since transfusions use blood that has been donated up to a month prior, there are bound to be some dead cells. Grace's liver just can't manage the extra load. The bad thing is that although we are only seeing a rise after transfusions, the levels never seem to go down significantly. They just hang on until the next time and then go up even more. The good news is that Grace seems to be feeling better each day. Her weight is stable and she is retaining slightly less fluid. Her other organ functions look good. Her platelet consumption is steady. She even went out in the hall last night without a fight and rode her tricycle for 30 minutes. It helped that Ali was out riding too! She took her bath this am and while that usually wears her out, today she went out in the hall for a 20 minute ride. She was able to keep down some juice as well. She is talking more and more and has asked to see Laura this afternoon. They haven't seen each other in 2 weeks and Laura really misses her. She crawls/walks around calling,"Baa,Baa," her name for Grace. Grace hasn't seen Laura toddling around and is excited about seeing her walk.

Dr. Martin told us to not get too worried about the bili although he does want to see it go down tomorrow. (Our lives are constantly hanging in the balance until the next 4am lab draw!) He feels that her increased activity and other labs are all signs that the VOD continues to be stable. Grace will have an ultrasound in the morning to check her status. Please pray that the VOD continues to resolve, that the bilirubin level goes down, and that the ultrasound shows improved liver function. Thank you for checking in and for your prayers!

Saturday, July 07, 2001 at 03:17 PM (EST)

Day+16. Grace is hanging in there. All of her labs are the same except for bilirubin which dropped a little from 2.6 to 2.5. Her weight has been steady and her belly seems to get smaller each day. She is drinking water now and we actually got her to walk in the hall last night. She didn't like it but we have told her that it is what she has to do to get home and she really wants to go home. I guess almost 4 weeks in the hospital are enough for her! She actually played a little in the tub today which is also encouraging. She continues to throw up each morning but that is normal. She has gotten used to it now and doesn't get all that upset.

Dr. Martin came by and said that the VOD still looks stable and that they plan to repeat an ultrasound either Monday or Tuesday. While we expect to see some continued reverse blood flow from the VOD, please pray that we do not see any large clots or any indication that the VOD is getting worse. He teased us with the hope that Grace could possibly be discharged before day+30. However, one thing that we have learned is never count on anything until it is actually happening. We plan to pack Grace's things after the discharge papers are signed. At any rate, her WBC needs to make a big leap between now and then. Please pray that her WBC continues to rise!

Please also pray for Austin, one of our transplant buddies who received his treatment in the winter. His family has been here since the fall and they just can't seem to be released for one problem or another. It must be so tough to constantly be faced with one challenge after another. Austin was on the unit last night for a transfusion and his parents just seem so weary from this ordeal. Yet amazingly, they continue to look for God's purpose if their journey.

Thank you for checking on us and praying for Grace!

Friday, July 06, 2001 at 06:31 PM (EST)

Day+15. Was it just last Friday that we were told that there was a very real possibility that Grace would not survive transplant? Praise God for all of the progress that she has made!

Grace is about the same. Her labs are almost identical to yesterday's numbers. While her WBC has not made a leap yet, her labs continue to show lots of baby cells. The mature cells are being used up repairing her mucositis damage, bone marrow, and liver. She has been needing platelets 3x per day and now she has needed them only once in 24 hours. She is reducing her consumption of pain meds as well going from 28 pushes of the button to only 11 in the last 24 hours. They may begin to wean her from some of the pain meds over the weekend although it is likely that she will go home on some type of pain med due to the discomfort from the VOD. The VOD is very stable right now and while we don't expect any surprises, it will be a long healing process. But after last weeks scare, we will be happy to wait! She is awake most of the day now and is able to enjoy her movies and books.

Mom finally hit the wall today. After being at the hospital for 20+ days, the intense stess, and continuing to nurse Laura, she woke up this morning feeling like she had been hit by a truck! Laura has been up a lot lately with teething and her lifestyle disruption, so Mom has been pretty tired. This am, she woke up with a headache and feeling cruddy in general. Nana took Laura for a walk and Mom got a few extra hours of sleep and didn't go to the hospital until lunch time. It was hard to be away from Grace, but it is so important to not get sick right now. She feels much better now, but just in case, will be wearing a mask on the unit for a few days to be safe. We are so fortunate to have the girls' grandparents to cook, clean, do laundry, and take care of Laura. Nana will be here until the beginning of next week and Mawmaw and Pawpaw will return then for a while.

Thank you for your prayers for Ali. She will be returning to Vermont next week. She will be taking an experimental drug to keep the cancer a bay until a treatment plan can be made. They did find out a bit of good news today. Ali is 100% t-cells which means that her transplant engrafted and there is a chance that she will develop graft vs. leukemia. This is where the donor cells recognize the cancer as foreign and attack it. Please continue to pray that they find the right plan to treat Ali and that they have a smooth transition back to Vermont. Ali has been through so much and she really deserves to be cured.

As always, thank you for your continued prayers for Grace's VOD resolution and for the continued growth of her WBC. We really hope to see an improved WBC soon so that she can be taken off some strong antibiotics that have some life-long side effects. Have a wonderful weekend and thanks for checking on Grace.

Thursday, July 05, 2001 at 05:01 PM (EST)

Day+14. Grace's labs all look good today and Grace looks better as well. Her WBC rose to .3 today and her bilirubin fell from 2.7 to 2.5. Her weight was down significantly (almost a kilo) this morning which hopefully indicates that she is retaining less fluid. Her kidney function is improved as well. She has been awake and reading stories all day and is just now taking a nap. Her pain is greatly diminished and she is not relying on her "button" nearly as much. Last night we got her to walk around the room, although she is still not too excited to get out of bed. Her tummy is still pretty big for someone so small and it is bound to be uncomfortable to move around. We are going to try to get her out in the hall tonight because as her WBC rises so does the possibility of having fluid on the lungs. Exercise is so important to prevent this from happening. We continue to see her talking more and offering a few more smiles. Right now if nothing unexpected happens we will probably be inpatient until about day 30 (2 more weeks). We should have been able to go next week, but with the VOD, she will have to be monitored a little more closely. It seems so insignificant to spend a few extra days in the hospital when less than a week ago we were not sure that she would survive the transplant. We are still worried about her but things look a great deal brighter.

As relieved as we are with Grace's progress, we can't be truly "over the top" because of the many battles that are still being fought on the unit. Grace's buddy,Ali, is not doing well. Her parents have found out that her cancer is back, after her 2nd transplant. More tests were performed today to try to figure out the best plan of action for Ali's treatment. They are being told that Ali may have as little as a month to live. It just doesn't seem possible as you watch that beautiful, full of life little girl, zoom down the halls on her pink tricycle. Her parents are asking for your prayers and some are fasting as well while praying for a miracle for little Ali. Please also pray for Ali's parents, baby brother, and extended family as they await today's test results.

Thank you so much for all of your prayers for Grace and for the other children on the unit. We all need prayers for a complication free transplant that cures our individual diseases. Grace is proof that our God is merciful and in control of all things

Wednesday, July 04, 2001 at 03:17 PM (EST)

Day+13. Happy 4th of July! We hope that this is the last holiday that we have to spend in the hospital. Grace has hit almost all of them in the last year. It is not so bad except when you don't celebrate them it really messes up your internal calendar, much like jet-lag. Sometimes you have to stop and think what day, month, or season it is. It just all runs together.

Grace is doing good and we thank God for His Blessings. All of her labs are the same as yesterday. While her bilirubin did not fall, it did not go up either! Her kidney function is the same and her WBC is still a .2. Even with a tiny WBC, her mouth is starting to heal. It looks and seems to feel so much better. She has even been drinking some water today. We hope that her GI tract will follow suit and begin to heal as well. Her belly girth is shrinking and today Dr. Martin said that her liver is less swollen. It has shrunk by 2 centimeters since the weekend. She continues to hang on to platelet transfusions and seems to be retaining less fluid. She slept well last night and has been a lot perkier today. She was awake for a couple of hours this morning and a couple of hours this afternoon. She is talking more and is more sensible. She does not look as stoned as before either. She even managed a small smile this afternoon. So, while she looks the same on paper, we are beginning to see a slow but steady improvement each day. Even though we know that she could still take a down turn, we are hopeful that we will see continued improvement. It is really nice to breath a little easier, although we are still afraid to let our guard down completely. We really do appreciate all of your prayers. It is a very real source of comfort for us to know that so many are praying for Grace. We are so glad that so many of you are willing to hold our hands on this terrifying roller coaster ride. Please continue to pray that Grace's health, especially her liver and WBC, will continue to improve each day.

Please also pray specifically for two of the patients here. Ali, who will be tested this week to see if her second transplant has been successful or if the cancer has returned. The Drs. have told her parents that there is a very real possibility that the cancer has returned. Please pray for Ali's complete healing and for her family's mental health as they await the testing and results. Please also pray for Andrew. His family was anticipating discharge within the next week or so and now he has had some set backs. He has been very ill with a lot of throwing up and has tested positive for CMV. CMV is a virus that presents itself in the normal world as a cold. After you have it, it lies dormant in your body unless stress or something to disturb your immune system, like a BMT causes it to awaken and return as a virus. It works much like chicken pox being able to return as shingles later in life. It is serious business to an immune suppressed child and Andrew's parents are very concerned. His WBC had just taken off and now some of the medicines that he may have to take for the CMV can suppress his WBC. Please pray that the CMV will resolve itself and that the Drs. will be able to figure out what other factors could be making Andrew feel so lousy and find some solutions for treatment. These are two beautiful kids with very faithful families. Please pray that they both get the miracles that they hope for.

Thanks for checking in! See some fireworks for us! (Thanks to Aunt Tammy for the girls 4th of July t-shirts- it has made it more festive!)

Tuesday, July 03, 2001 at 02:38 PM (EST)

Day+12. Happy first birthday to Laura!!! Laura got an extra special present today...her big sister has CELLS!!!!!! Grace's WBC was .2 today. Not huge, but a definate sign of growth. Each day she should continue to increase that number with a little of expected bouncing around of the count.

We felt really crummy about the VOD situation this morning, but after meeting with the Drs., we are hopeful that everything is slowly starting to resolve itself. Truly a miracle in the making! Grace's bilirubin shot up this am to 2.7, not good at all. We were so upset that it took such a jump. But as we have explained, VOD is a very comprehensive picture and Grace has made some definate improvements in other areas. Her kidney function looked great today (it wasn't so good yesterday). She seems to be retaining less fluid in her belly as well. Both Mom and Dad thought that it looked smaller but didn't say anything to each other. When we admitted what we had been thinking and measured her girth (she is measured around her belly each day to monitor the swelling of the liver), it had shrunk over 3 centimeters since Sunday. Dr. Martin confirmed that it did seem to be a lot softer. Also, while she still complains of pain, it seems less intense. She was actually awake for over 2 hours this morning. She was a little spacy but she did give Mom and Dad each a kiss! Something that we haven't seen in almost 2 weeks! Dr. Driscoll came by and checked in on us this am. Grace still doesn't meet the criteria for the experimental drug which is good but we wish we could go ahead and get her on it if she is going to end up needing it. Dr. Martin talked at length today with Dr. Richardson, of Dana Farber Cancer Institute, who is in charge of the study of the drug. They tried to talk them into letting Grace have it because her kidney levels met the critera for yesterday and her bilirubin did for today, but no go. He felt that Grace was ok without it at this point and would hopefully resolve this on her own. He gave the Drs. his cell # because of the holiday tomorrow which we really appreciated. That way if she needs it there will not be a delay. The Drs. here have been so amazing about trying to circumvent any potential problems. Dr. Martin pretty much gave us the same story that Dr. Kurtzburg gave us over the weekend. Grace just has to hang on for a few more days without getting worse. If she can do that, she will still have a long recovery ahead of her, but there will be only a minimal likelihood of the condition being life threatening. Please continue to pray for Grace's comfort and for the VOD to resolve itself. Thank you for all of the prayers that you have already offered up on her behalf. Our prayers are being answered.

Please also pray for Grace's buddy, Ali. She is on her second transplant and after her last transplant, the cancer came back. She will have tests done this week, probably Thursday, to see if the cells that have grown back are her donor's cells or if they are the cells that we don't want to see. Please pray that Ali will be full of donor cells with not a cancer cell in sight. Ali has been through so much and she is still so full of fight! She, like all of the other kids here, deserves a chance at a normal life again! Thank you for your prayers for all of us!

Monday, July 02, 2001 at 06:58 PM (EST)

Day+11. Today has been a mixed bag. Grace's bilirubin came down (good) to 1.7 today from 1.9, which statistically means nothing other than it did not take a huge leap which is great. Her kidney function rose a little (bad) but it is still in a normal range. Grace's weight is about the same (good) and she is hanging on to her platelets. On Mondays, the lab does a manual blood count instead of the usual automated one and today they reported seeing a few rare baby cells. Not enough for an official WBC, but evidence that she is starting to make cells and that we should see something by the end of the week. We should be more excited and we are glad to see the baby cells, but we are in VOD mode at this point. Grace had an ultrasound this morning and we were really hoping that her condition would be stable, but instead the VOD is worse than on Friday.
It is not dramatically worse,however, and the Drs. hope that it is now at it's peak. They are amazed that, based on her labs, her liver is functioning pretty good. So there is still nothing to do but wait and pray that she will stabilize. Another bad thing is that pain meds are processed in the liver, so Grace needs to be on as low of a dose as she can manage, which means that she is going to have significant discomfort. Also, the longer you are on a med, you develop a tolerance for it and the dose has to be increased. So the med that she was started on last Friday is not working as well as it once did because we need to keep the dose low. Once her counts come in, we can expect to see the pain diminish a little, but a lot of her pain is from the swollen liver right now. It is pressing on all of the surrounding organs and distending her belly. Her belly is so huge you would think she is pregnant. It is so miserable for her. Please continue to pray for her comfort, for the VOD to resolve, and for her cells to begin to grow.

With today's count not rising dramatically, and some numbers falling, the risk of severe VOD continues to diminish. We are far from "out of the woods" yet but we are hopeful with each day that passes uneventfully. If we can muddle through this for a while longer and not get more severe, then hopefully our stay here will only be extended by a few weeks more that anticipated. It's funny how just a few weeks ago our goal was to "fly through" transplant and now our goal is just to survive it.

Today Grace also had to have her port accessed as a precaution for a blood culture. They will leave her accessed for a couple of days and run her antibiotics through the line to be safe. She did really well for it, probably because she is so stoned on narcotics. Last night she was hallucinating about a snake a Disneyworld. At least it seemed to be a pleasant snake and she was not scared. It is getting harder to have her so dopey all the time. It has been like this for well over a week now and we miss her. She doesn't talk a lot and she never smiles or acts like anything brings her pleasure.

On a bizarre note, last night part of her tongue FELL OFF! It was quite a lovely experience as you can imagine. The mucositis had just coated her tongue and because your mouth is so vascular the top just sloughed off. We told Dr. Driscoll today that we had definately not read anything about this in our PBMT handbook. It didn't seem to hurt and in fact it made her mouth look a lot better and she could talk more clearly. This is definately a story for Dad to tell the future boyfriends!

So for now it is just waiting it out and praying, praying, praying. Our mental health is not too bad and we know that the strength to do this again each day comes from the prayers of so many. Thanks for caring about Grace.

Sunday, July 01, 2001 at 05:21 PM (EST)

Day+10. Happy 3rd birthday to Grace. A big thank you to everyone for all of the birthday wishes, cards, and presents for Grace (and for Laura who turns 1 on Tuesday!) We have given Grace some of the gifts whenever she is feeling perky and are saving some for a time that she can really enjoy them. This suits Laura just fine. She is having a grand time crawling around the vacation house and pulling tissue paper out of gift bags and bows off of packages. Laura took her first faltering steps a week or so before Grace's admission, but this morning she walked a few more steps across the kitchen to Mom.

Grace has been asleep for most of her birthday. We have kept it kind of low key. She has a banner outside her door for the nurses, drs., and other patients to sign and wish her well. One of the little boys here colored her a picture and she really liked it. Someone from our church, and we apologize for not knowing who, sent a beautiful birthday cake for the girls. Laura was going to have some today and we plan to bring the rest to the PBMT unit tonight and put it in the family lounge for the staff and other parents to enjoy. We keep some crazy hours around here and so someone will be appreciative of a midnight snack for sure! Thank you to whoever was thoughtful enough to send the cake. Grace being so sick on her birthday is harder that we thought that it would be and going through the motions makes it a little easier.

Grace's condition remains about the same which is good. Her bilirubin was up slightly and so was her kidney function, but they are still fairly low. She continues to keep her weight down and is holding on to platelets. Each day that she does not worsen significantly is a chance that the VOD will remain mild and not become severe. Tomorrow she will have a repeat ultrasound for comparison with the one that was done on Friday. Please pray that it will show no further problems and that her condition remains stable. Tomorrow, because it will be day 11, Grace will fall into a new stat group in which her levels will be able to be higher before she is declared severe VOD. Day 16, which will be next Saturday, will also be a milestone. If she can limp along with mild VOD until then, even if it becomes severe at that point, it is not as serious as having it so early after transplant. It is all very complicated but simply put, we just don't want things to get bad too fast. Dr. Kurtzburg said that they fully expected Grace to be on full time oxygen, with huge levels, and a huge belly, by today and so they are pleasantly surprised that she is maintaining. Our prayers and the prayers of others are certainly being heard. We want to thank you for all of your support and messages of encouragement. They mean so much. Someone from our church (Thanks Kathy) left us a message that said, "God's hands are on Grace. It is not just a statement but a conviction." The whole time that Grace was being ultrasounded on Friday, we just kept that thought in our mind and it helped us to stay focused. We realize that we are constantly adding to your prayer list but please add one more. Andrew is a cute little boy who has become the 2nd child transplanted here for his particular metabolic disorder. His family hopes to wrap up their care on the unit in the next few weeks, but he still has some issues to resolve before he can be discharged. His website is www.caringbridge.com/page/andrewshope. They are a great family and are always offering us and Grace encouragement. I know that they would appreciate your prayers for their brave child. As always thanks for praying for our child and the other beautiful children that we meet along the way.

PS We have almost forgotten the reason that we are here now that Grace has a complication. We still have no white count althought the mucositis is getting a great deal better. Grace has less pain on the new meds. and did take a wobbly tricycle ride last night. She's tough stuff!

Saturday, June 30, 2001 at 10:12 PM (EST)

Day +9. It has been a rough 24 hours. However, we finally have Grace’s pain under control after a week of watching her in misery. Her pain meds were changed last night and she has rested so well and has required less medication because it is finally under control. It has been a great relief to see her suffering diminished.

This morning we got to meet with Dr. Kurtzburg. She is the director of the pediatric stem cell program. She is internationally renowned for her work with cord blood transplants. She has been featured in many publications and we saw an article featuring her in PEOPLE this fall. We had heard that she was super nice and very intelligent. We found her to be charming and very patient. She took so much time with us answering our questions about transplant and VOD. She also let us pick her brain regarding post transplant therapies. We are so glad that we got to meet her. She is not on service on the floor very often and we feel blessed that she is here this weekend.

Now a little about VOD. Hepatic veno-occlusive disease is a transplant complication that is usually seen in those who have received large doses of chemo and radiation prior to transplant. Grace is at an increased risk because of the radiation to the original tumor bed that was behind her liver. 90% of her liver was in the field of radiation. Anyway, what happens is the veins are damaged from the treatment and become occluded or blocked. Then the liver cannot filter the blood properly, becomes over-worked and fluid backs up and stresses the kidneys and the lungs too. It can be mild or it can be life threatening. It is a very serious concern because there is not a lot of treatment available for it. All of the kids here are on low dose herparin to thin the blood to prevent clotting in the liver. At admission, Grace also was on Actigal, which is sometimes used for gout. This drug prevents the build-up of sludge in the gallbladder that can happen when you are not eating. The sludge makes the liver work harder and then it spills enzymes. She stopped taking Actigal the first week that she was here because her bilirubin (something that we wanted to suppress) got to 0. That being said, she is back on the Actigal, which is really hard for her to take given the mucositis. Please pray that she will continue to be able to keep it down. It is a struggle and it is only available as an oral med. So far she is trying to take it like a trooper! There is another drug available for VOD that is manufactured in Italy which is currently under clinical trial. Fortunately, Duke is one of the two institutes in the US that can give the drug. The problem is that she can’t take the drug until she meets the criteria for the study which means that her VOD will have to become worse. We are just thankful that we are here so that she can get the drug if she needs it. Apparently, the folks here have seen good success with it.

The markers for VOD are bilirubin levels, kidney function, weight gain/fluid retention, and platelet consumption. Yesterday her bilirubin level was up and the drs. ordered an ultrasound. While we were told that the blood flow was restricted in the left portal, there was blood flow in other areas. Dr. Kurtzburg told us that she wasn’t clear if they saw the area and the flow wasn’t there or if they just couldn’t see the area. While we expected the bili to be up today, it actually came down a tenth of a point (1.7 from 1.8 yesterday). Her kidney function is still good and her platelets post transfusion are hanging in there. Her weight has been a concern but the diuretics are keeping the fluids down. That being said, Grace’s VOD is still mild. It could resolve itself or we could be in for a long fight. Best case scenario it will add another 10 days to our stay in the hospital. If using the experimental drug it will add 14 days to 3 months. Either way, the important thing is that Grace beats this latest bump in the road and survives the transplant. We are going to be struggling with these issues for weeks to come and the next week will be especially critical. We have been told that some days the levels will look good and then they could look bad again. Please pray that Grace’s body will resolve these liver issues on it’s own and that all of her functions return to normal. Please also pray for her cells to come in soon. (By the way, VOD is totally independent of cell growth. Having a white count will make the mucositis clear up, but it will not repair the liver damage.) We are very concerned and greatly appreciate all of your prayers.

Friday, June 29, 2001 at 09:30 PM (EDT)

Day 8

Today has been tough. Dad had to call Mom to help at 4 am. Grace has uncontrolled pain throughout the night. Several tests and and x-ray showed no particular problem. She seemed to get a little better relief throughout the day today.

Grace's bilirubin went up again today. Dr. Driscoll ordered an ultrasound that gave us the news we've been dreading for months. Grace has mild VOD - a serious liver disorder. It comes from her history of high dose chemo, the radiation that affected her liver, and the ABMT. The next few days are critical. Hopefully, the two drugs that she's currently taking will solve the problem. It is likely, however, that she will need to change to an investigational drug to fight off the disease. It is only available at a few US hospitals, so thank God we're here.

I'm tired and signing off. Please - pray that the VOD will not continue to chip away at Grace's liver function.

Thursday, June 28, 2001 at 09:18 PM (EST)

Day+7. We awoke to a day of new mercies and felt showered with peace from the prayers of so many. We thank you for holding us in your hearts and for your prayers for Grace. While we still have no WBC, our prayers have been answered in that Grace's pain seems to be greatly diminished today. She was finally able to get in some good sleep last night and this afternoon. Her pain meds have continued to be increased and she has finally gotten some relief. Last night we had another round with her pain pump. Apparently it has a 4-hour maximum dose programmed with the “button.” As her pain meds have been increased, the max dose was not changed. When the max is reached, the whole pump cuts off, continuous and button, with no sort of warning. We knew she was hurting and kept giving her extra doses but we had been locked out and the continuous had unknowingly shut off. We think that she went “cold turkey” for about an hour before the mistake was figured out. It was so bad. It reminded us of the intense pain that she experienced prior to diagnosis. It made us thankful for narcotics!!!

Grace’s labs looked good today. Her bilirubin (liver function) is coming back down and her kidney function continues to be good. The continuous drip of platelets did the trick and got her internal bleeding under control. Her mouth looks awful, but she is no longer having the continuous trickle of blood. Her platelets are actually really high, (they are not hers, they are from the transfusion), and we have been able to cut back on the constant drip transfusion. Thankfully, this means that we are safe for now from accessing her port. Her weight is still elevated but it is kept in check with lots of diuretics. So needless to say, Mom and Dad did not get taken to Dorothea Dix today (for our out of town relatives, Dix is a mental hospital in the triangle).

A couple of funny stories….Each day the kids on the unit are weighed. A rapid weight gain could indicate fluid retention etc. Anyway, the nursing assistants always come by and Grace is still sleeping. So after a few days of this, they now go to all the rooms, weigh the kids, then park the huge scale outside our door until her majesty decides to arise and be weighed. Then Mom and Dad have to lug the scale in and convince Grace to do it. She is so pampered.

Story#2 - Grace now sleeps with her pain “button” cradled like a favorite stuffed animal! She is always well aware of where that button is and what it can do for her! We took a picture this morning of her all cuddled up to it. She is such an addict now!

Story#3 - (and a praise) Grace went on TWO tricycle rides today! As she was riding we just could not believe how far she has come since yesterday. One ride was for about 30 minutes. Her motivation was racing her nurse. Anyway, she is so constantly stoned from the narcotics - her pupils are like pinpoints. (Hopefully this will get all of her drug experimentation out of the way before the teenage years. ) She was swerving all over the place. She is pretty good at steering, but tonight she was crashing into everything. It is a good thing that she has platelets! Now we know why some prescriptions come with a warning against using heavy machinery and motor vehicles!

Thank you so much for your response to our prayer needs. Dr. Driscoll says that Grace is doing great today and that hopefully we will see some cells soon. Please also remember Jon as he heads back to NYC this weekend for more antibodies. Mom spoke with Emily’s parents as they left the hospital last night. They are amazing parents and have said that they came to Duke to make Emily feel better and now she does. Please continue to pray for them as they face some long days ahead. As always, thanks for your support!

Wednesday, June 27, 2001 at 06:34 PM (EST)

Day+6. What a day! It has been the roughest yet in many ways. Grace is fine, but she feels so bad. She got red blood today (hemoglobin) and lots of platelets. She continues to have a mouth full of blood. It looks as if she has just had teeth extracted. It is just from the mucositis both in her mouth and GI tract. She has an almost constant trickle of blood coming from her mouth. It is not a comforting thing to see. She is soaking up platelets as fast as she can get transfused so today she was started on a continuous drip of platelets. It seems to be helping the bleeding so far. Her bilirubin (liver function) was up today and we flipped out. Dr. Driscoll, however, was not concerned. He feels that the rise is due to the large amount of blood in her belly. Apparently blood is protein and the bilirubin is an indication of that protein being processed. Her other liver enzymes are at a good level. Her weight continues to rise and we pray that it is only from the excessive amount of blood products that she is getting. Excessive fluid is common at this stage of the game, but it is still a worry. We will repeat the bilirubin tomorrow and pray that it will not rise. Also now that she is getting the extra platelets, we may have to access her port for a third line. We really don’t want to do that. To top it all off, we realized today that her pain pump has not been working properly, so who knows how much pain control she has had. It is fixed now and she does seem more comfortable tonight.

We continue to wait for cells, although it is too early to see any yet. If she can get some cells we will still be battling VOD, but at least the mucositis will start to clear. We really feel as though we are going to crack up. You just can’t stay at this level of intensity for this long (and so many families here do it for so much longer). We never see Laura, even though she is in the same city, and that is starting to wear thin. Grace is just too needy right now for either of us to be away for very long. Please pray that this nightmare will end soon for all of us and that we will see no other complications. This is the worst suffering that we have ever seen in our lives and we just want it to end for our sweet Grace. She never smiles and when she talks, we cannot understand her because her mouth is so bad. We are hoping and praying that she will be herself soon. We miss her.

Today was also awful because, Emily, the child that we told you about yesterday, died this afternoon. Just last week she was outside our door, talking to Mom, offering to help Grace with her mouth care. She was a beautiful child and it was a devastating loss. We have long since given up on “why” simply because we don’t have the energy to try to sort it all out and come to some kind of peace right now. All we know is that life is a precious gift and it is not to be taken for granted. Please pray that God will hold this family in his hands tonight and in the coming days as Emily’s parents return home to her two sisters. Please also pray for the bravest people we have ever met - the children on this unit. Thanks for listening to our frustrations and our fears.

Tuesday, June 26, 2001 at 04:53 PM (EST)

Day+5. Grace is hanging in there. All of her labs for liver and kidney function continue to look fine. She gave us a scare this morning whenever her weight seemingly shot up but we weighed her a second time and she was fine. She had a rough night as her temperature spiked again and she was throwing up quite a bit of blood. She was very restless and did not rest well, and neither did Dad! We are not sure why she can't seem to get into a sound sleep. It could be a combination of many things ranging from pain to drug reactions to the fact that she has had a lethal dose of chemo. She is having vivid dreams or hallucinations when sleeping as is evident in her crying out and talking nonsense, etc. Please pray that she will be able to rest soon. All of her blood cultures are negative so far which is great news. Hopefully her mucositis has reached its peak. It is a horrible, horrible thing and is making Grace pretty miserable. She continues to throw up blood so they will be checking her platelet count 3X a day in order to keep them above 40k with transfusions. Normally they like to keep them at 20k (normal being 160,000-400,000), but since she is having such bleeding in her GI tract, they have upped her threshold. Dr.Driscoll says that in spite of all this agony, she is doing great. We just have to hold on until she gets a WBC. Please pray that we will see growth soon and she can begin to recover. On a good note, Grace did a few laps in the hall today(for a bribe) and did not cry during her bath.

On a totally cosmetic note, Grace lost all of her hair today. She has been completely bald since the fall. Since finishing standard chemo at Easter, she has grow lots of hair, about an inch long, all over her head. Today it just fell out. If you tugged on it,whole clumps fell out. You think that we would be used to it by now but you never get used to it. It is just so sad. Grace is pretty cute with no hair,very baby like, but it is hard to see it fall out again. The thought that it's "just hair" is fine until you actually live it. Of course it doesn't matter when compared to cure or other serious side effects. We haven't told Grace and she hasn't noticed because she feels so bad. It would hurt her feelings because she was so proud of her "re-growth."

To put something as benign as hair loss into perspective, one of the children taken to PICU yesterday continues to fight for recovery. Emily is a sweet 9 year old who is battling AML, a tough leukemia. Her transplant has been a struggle as she was delayed due to boughts with flu. She spiked a fever over the weekend and her blood pressure dropped yesterday before she was taken to the PICU. She may have a blood infection. Her transplant took place today in spite of the difficulties, but it was not the day her family had hoped for. Grace really likes Emily and Emily was a real help to Grace regarding mouth care upon admission. Her parents are asking for your prayers. Her website is www.caringbridge.com/page/emiann. Please also pray for the other children both on the unit and those taken to PICU. (You are not supposed to mention names of others on this site without permission, but God knows who they are.) Thank you for your prayers.

Monday, June 25, 2001 at 07:20 PM (EST)

Day+4. Grace is doing fine. All of her labs look good including her liver and kidney function. She got her daily platelet transfusion and her hemoglobin is still hanging in there (Yesterday there were only 4 bags of platelets in the entire hospital-very scary-They had to send out to a neighboring hospital for more. Mom and Dad are going to be donating blood and platelets for the rest of our lives after the numerous transfusions Grace has had. She never gets a transfusion that we don't look at that bag and thank God for the person that donated such a crucial part of life to our child.) Grace continues to be sick although it seems to be a little less intense today. Her mouth and GI tract are a bloody mess as is evident as she throws up. Her pain meds have gradually been upped and she is fairly comfortable. She is having a little trouble adjusting to the increased rates and her breathing has been a little depressed. It mainly is whenever she is sleeping and gets really relaxed. It is a common issue with the kids here and they do eventually adjust to the narcotics. She is on a monitor to continually check her breathing and has a "blow by" hose of oxygen blowing across her face while she rests. She got up for a bath today and that has been her big accomplishment thus far. We need to get her up for a walk, but she was awake all afternoon and is now sleeping. She was a little perkier this afternoon and talked for a while about wanting to go swimming with cousins Benjamin,Hannah,and Jacob (and also Aunt Teresa whom Grace thinks is another preschool playmate!). She has read some books and watched some PBS, all good signs. We continue to wait for cell growth. Please continue to pray for us to see cells soon so that Grace can begin to heal. Please also pray that we see no complications and that Grace remains comfortable.

It has been a really tough day on the unit. One child left to return home because he is not expected to live any longer. One child went to the Pediatric Intensive Care (PICU) last night and two more went today. That is 4 kids out of 15 that are in the fight for their lives. A second attending physician had to be called from the onocology clinc to handle the load. Please pray for these children and their families during this struggle. Please also pray for the Drs., nurses, and staff that care for these kids. They are so skilled and have to pay an emotional toll each day to work in such an intense setting.

Finally, thanks to everyone for all of the cards, messages, food, gifts for the girls, and prayers. They have greatly helped to ease our burden. We feel blessed to have such supportive friends and family! Grow, Cells, Grow!

Sunday, June 24, 2001 at 02:01 PM (EST)

Day+3. Grace is about the same as yesterday. Repeat labs were drawn last night to check her bilirubin. The normal range is (.2-1.2) and Grace's came in at .4. The labs were repeated and this time we got an even better number of .2. Rising bilirubin can indicate liver failure (VOD) and around here high is considered to be 4.0 or 5.0, much higher than normal. So Grace is fine for now on that front but she will be closely monitored over the next few weeks. She continues to be swollen although the long term diuretic seems to be doing the trick as her weight was back down this am to within a few tenths of a kilo from her baseline weight. She took a long bath this am, and it still seems to relax her as she feel asleep in the tub for the second day in a row. She is sleeping a lot
and her pain meds seem to be keeping her comfortable. She is still throwing up constantly whenever she is awake and she is now unable to spit everything out and we have to suction it out for her. She is so raw inside and is so sore from 11 days of being sick over and over. The suction seems to be such a relief for her. Her other blood counts are mostly good. Her hemoglobin is hanging in there so we get to avoid a blood transfusion for today. She has been getting a platelet transfusion everyday and will have another this afternoon. Her kidney function looks great and we are so thankful for that. She is still running fever and probably will until her WBC comes in which we hope will happen somewhere between days 10-20. She is on some scary antibiotics which have some serious potential for long term side effects, so they switch them around every few days to avoid this as much as possible.

This is the part that we have been dreading and had been warned about. She is so sick and there is no hope of any improvement for many days. We are just trying to hang on and keep our eye on the future. We talk to Grace all day about going on her Make-a Wish to Disneyworld, going to the beach, going to the mountains, going to Sunday School, just going anywhere but here. It seems to help her mental health and ours too. Your prayers mean so much to us. Thank you for your faithfulness to pray for Grace. Mom,Dad, and Laura are all doing fine, so don't worry about us. Please also say a prayer for all of the kids who are fighting for their lives each day on the unit...especially Grace's buddy, Ali, as her family has organized a day of fasting and prayer for her today. Thanks for your concern and your messages of encouragement.

Saturday, June 23, 2001 at 1:48 PM (EST)

Day+2. Grace is feeling pretty bad today. She is running the expected fever and her mucositis continues to worsen. Her mouth still looks pretty good and she is still letting us do mouth care although she seems to have more pain with it. This morning her weight shot up almost a pound. This could be an indication of several different problems. Some weight gain is expected because the toxic chemo has shattered her capillaries and now they are leaking out as opposed to being converted to urine. She is very swollen as a result. She was put on both a short term and long term diuretic that seems to be helping. The sudden weight gain could also be a forerunner of the one side effect that we live in fear of the most,VOD (liver shut down). Her liver is enlarged which is expected and is fortunately not tender (another VOD indication) at this point. She will have more labs drawn this evening to check her bilirubin (another VOD factor). It has been at a good level so far and while we do expect to see it go up a little because of the TPN, we are praying that it does not go up a lot. There is nothing to do but wait and see what happens, which is very difficult. Please pray that her liver function will not be compromised and that Mom and Dad will not completely lose their minds before this is all over.

Grace slept well last night after her pain meds were increased. She is still throwing up constantly and is in quite a bit of pain as a result. She did manage a pretty long bath and it seemed to relax her although she was not up for a lot of playing. We are hoping to get her up for a walk today to add stress to her lungs so that those leaking capillaries don't fill her lungs with fluid.

We look at the photos that we have around her BMT room of her laughing and playing and it is really hard to see her so miserable. Please pray that we will see cell growth as early as the end of next week so Grace will begin to heal. Thank you for checking on us and for your continued prayers for Grace in this difficult phase of treatment.

Friday, June 22, 2001 at 03:32 PM (EST)

Day+1. Grace is continuing to do quite well. She was a little more restless last night and this morning so we started a continuous infusion of pain meds in addition to the "button." She is on a really low dose but it seems to have done the trick for now. She had a long and playful bath, has completed 2/4 mouth cares, took a spin on her tricycle, and shot a little basketball at the nurses station. We continue to anticipate increased discomfort over the next few days as she reaches her peak of misery around days 4-7. We are confident that her pain meds will continue to be increased as we progress and are hopeful that she will remain as comfortable as she is today. She is currently on an antibiotic because one of her urine cultures showed bacteria that could be from a UTI or could have just been from a contaminated urine specimen. Either way, Dr.Driscoll, known as the conservative one on the unit, started her on the antibiotic just to be safe. We anticipate fever to appear in the next few days anyway and she would have begun the antibiotic then, so she is just starting a few days early. She was started on TPN, (iv nutrition that she will remain on for about 40 days because of not being able to eat),
on Wednesday. They are continuing to make some adjustments in the trace minerals such as potassium and again this is par for the course. Her glucose levels were up today, possibly from the TPN and the steroids she got with her transplant yesterday. There is not a concern with it now, just something that we will keep an eye on.

We are so proud of our girls! Laura has really settled down and is adjusting to her "new life." She is such a happy girl. We are so looking forward to taking her places and showing her new things whenever this is over. She has been pretty sheltered and just loves to get out and go anywhere. Grace is trying so hard with all of the requirements that she has everyday, walks or trike rides for her lungs, mouth care and baths for infection and bacteria. We have told her that these are her jobs to get out of the hospital sooner and she has taken that seriously. She has done such a great job at mouthcare that although the skin is broken down in her mouth, she only has one sore so far. She frequently asks to "leave this stinking hospital" which actually makes us glad to see that she still has spunk. She is still throwing up ALOT from the internal/GI tract mucositis and we don't expect to see improvement until her WBC returns. It is quite painful, and she is so tough! She has such a high tolerance for pain and we are so thankful!

Thank you for your continued prayers for Grace and her comfort and her liver. Please remember the beautiful children here on the unit in your prayers as well. You don't realize the gift of fresh air, sunshine, wind etc. until you don't have it . That is where these kids should be, outside playing in the summer sun, not in isolation in the hospital! Please keep Jon in your prayers as well as we anxiously await the results of his 6 month scans. Thank you for holding us up in your prayers. It means more than we can say! Enjoy your weekend!

Thursday, June 21, 2001 at 10:27 PM (EST)

Day 0!!!!!!!!!! Grow Cells Grow!!!!!!!!!!!!!
Grace had her reinfusion at 12:57 today! It was not terribly exciting but it is great to be out of negative numbers! It was very much like a small blood transfusion and lasted about 30 minutes. The cells are frozen with a preservative that they attempt to wash out before reinfusion. However, they can't get it all and thus there is a strong smell during the transplant. We had heard it described as creamed corn, oysters, garlic, etc. but to us it smelled like tomato juice/soup. It is not too bad but is is still lingering, especially on Grace's breath. She got a little sick because the patient tastes it and has thrown up quite a bit this afternoon. We took a few pictures and also got to save the bag that the cells were stored in. We have been a little sappy and teary because June 21 is not only the date of her transplant but also was Grace's due date to be born three years ago. Kind of poetic that today starts the rest of her life!

Grace is doing great in spite of her nausea. She is sleeping more because of her meds. but is still very playful and is enjoying bathtime, reading stories and watching tv. She has been riding her tricycle up and down the halls and has been doing her mouth care like a champ. We bribe her by giving her a surprise after each mouth care. If we are here for 30 days and we do mouth care 4x a day that will be 120 surprises! It is a good thing that she is easily impressed by whatever we give her. We don't care what it takes if it keeps her from getting an oral infection.
Her labs all look good and we continue to pray that her kidneys and liver as well as her lungs will be protected.

We have a new child to add to your prayer lists. We thank you in advance for your faithfulness to not only our baby but the babies of so many. Parents of sick children share a special bond and knowing that your child is being added to the prayers of a powerful community of believers is such a comfort. The little girl's name is Ali (Allison) and she is three years old. She has so many things in common with Grace including a baby at home, the same fuzzy pink slippers, and a love of tricycles. She is just adorable and has such a fighting spirit. She is currently battling her second continuous transplant. They are a beautiful family and I know that they would appreciate your prayers. Their website is www.caringbridge.com/al/alisonlamp

Thanks for checking on us.

Wednesday, June 20, 2001 at 11:17 PM (EDT)

Day –1

Tonight’s update will be quick….we’re all tired! Grace has not felt as good today as she did yesterday. She needed the first of many red blood transfusions today and a second platelet transfusion. She started off well and had another very long and enjoyable bath. She is still having a lot of nausea and vomiting and that’s starting to bring her down a little bit. This morning’s exercise in the hall didn’t go well because she ended up getting sick. Grace took a long nap today with the help of a little medication. She seemed to feel some better when she woke up.

We started Grace’s pain med on a PCA pump this afternoon. That gives her a button she can press when she feels pain. It gives her relief in about 30 seconds. This has helped tremendously. After getting the PCA we were able to get her into the hall for her afternoon exercise and got in her final mouth care of the day. Dr. Driscoll says she looks great. The discomfort/nausea etc. are all to be expected. He feels we’re in for about 10 rough days.

Please pray for CeeCee (a young lady on the PBMTU) and her family. She was airlifted home today. Her transplant was unsuccessful and she will only live for a couple of more weeks. Also, please pray for Grace’s well being. We continue to worry about Grace’s liver, although so far it is fine. It will have to be watched closely for the next 20 days.

Funny story – during one of Grace’s puking episodes today she covered Mom’s sandals. It took off her toe nail polish! Was it the stomach acid or the chemo? I guess we’ll never know…………

Tuesday, June 19, 2001 at 07:15 PM (EST)

Day-2. A much better day! Thank you all so much for your prayers! Considering that she is here for a transplant, Grace has been great today. She started out the day with her typical nausea and throwing up, but Dad was able to catch it all and the dressing was spared. Grace didn't even get too upset. She took a one and a half hour bath this morning, making Mom play Sesame Street the entire time. She has a plastic Ernie and Bert and she loves to have them be eaten by a plastic fish over and over again. Her dressing change was not at all stressful, probably because it was soaked from the long bath. She was also able to be unhooked and went for a tricycle ride in the hall. She tired more easily than yesterday, but she still had fun. She took a normal afternoon nap and has had a nice evening.

We had the "changing of the guard"today as Nana went home and Mawmaw and Pawpaw came to care for Laura. Both girls were glad to see them! Nana came by for a visit on her way out of town as did Mawmaw and Pawpaw and Laura. The Cains will be here for 2 weeks and then we will switch again. We are so blessed to have so much help. So many families have to leave the siblings at home. That would just push us over the top! It must be so hard to cope with the separation yet so many families that we have met have to deal with this, especially when there are school-aged children.

We also had a visit from Austin's mom today. (We finally got to meet her in person over the weekend after months of e-mails). Austin was on the unit at the same time as Jon. Austin was in clinic so she brought Grace a cute book. Grace really enjoyed it. Thanks so much! The Prices need your prayers that Austin will soon be ready to go home. They have been here since the fall and are one of those families that had to leave an older child,Cole,behind. It seems that just when they think that they are ready to go, another complication arises. Then as soon as it is resolved, something new crops up. They are a great family with a strong faith and big hearts!

Grace has not needed the expected pain meds at all today. She had some last night but now we think that it may not have been pain making her cry out but nightmares. Either way we are thankful to have another day without the pain med pump (PCA). She has done her mouth care beautifully and has taken all of her oral meds without getting sick. When Dr.Driscoll came by he could not believe the difference from yesterday. He fully expected her to be on the PCA today. Instead she was up playing with a race car and hopping around the room! He said that she looks great. We know that the hard days will be back soon, but for today our prayers are being answered. We can't tell you how much we have felt the strength of your prayers. They are sustaining us! Also more good news, Laura did not cry at being left today!

Thank you for your continued prayers for a complication free transplant for Grace and all of the brave children on the unit. Also pray for Jon as he heads to NY for his next scans that they will show nothing but a spunky kid!

Today we got the cutest card from Dad's former boss and his wife (Thanks Pat and Dave). We enjoyed it so much we thought we would share. The outside had a duck watching tv and said ,"Wouldn't it be nice if our lives were like VCRs...(inside) and we could fast forward through the crummy times?" Our thoughts exactly!!!!

Monday, June 18, 2001 at 08:12 PM (CDT)

lDay-3. Tough day. It is a bad feeling knowing that we cannot back out now. Grace has been in bed for most of the day. She got up this am and promptly threw up. Then she did manage a bath and her daily dressing change. Her nurse motivated her to exercise by letting her be unhooked from her iv pole for a brief while and she rode her tricycle for a bit before wearing out. Also at this time, we got to see the last bags of chemo being taken down. Definately the best part of the day. This afternoon got rough. Her counts are dropping as expected and she needed a platelet transfusion. She is also running a fever, although it is not all that high by BMT standards. It was enough of a concern to culture her lines including her port. It was awful quite frankly. Accessing her port involves putting in a blunt needle into a titanium plate in her chest. It is never fun, but today it was made worse because she feels so bad. It took 5 adults to hold her down. All the while with her begging Mom and Dad to stop and being so scared. Not a good thing to participate in...restraining your child for a painful procedure. Then she got sick again and threw up on her dressing which had to be changed a second time today. Because she threw up, mouth care on an already raw mouth had to be repeated. Then her blood pressure cuff kept getting stuck and over inflating and pinching her arm. And each day we are forewarned of worse days to come.

Grace is starting to have pain from the mucousitis and has had some doses of narcotics. We anticipate that she will increase her doses over the next day until she is on full time pain meds. Please pray that her pain will be well controlled. It is tough to watch her suffer.

Her other labs look good and she does not show and signs of liver or kidney stress. Please pray that we will not see any of this. We are running a little scared of all the complication risks as we enter the toughest part of transplant. Her doctors tell us that Grace is doing what is expected but it is still overwhelming. Please also pray for our Laura. She cries each day at being left and we still have many days to leave her. She is happy once we are gone, but the problem is that we don't want to be gone! This is such a family battle for cure and we are so proud of both of our brave girls! Thanks for your prayers!

Sunday, June 17, 2001 at 11:26 PM (EDT)

Day –4

Today has been a roller coaster ride of sorts. We started out great. Grace made a grand presentation of her hand made Father’s Day card. It was beautiful. Grace worked on it for over an hour Saturday while Dad was at the vacation house taking in a little down time. By the time Mom came this morning, Dad and Grace were racing through the halls with Grace’s trike. We’re staying on a modified version of our Brenner’s schedule as long as possible – Dad goes home for several hours during the day to bathe, rest, eat and spend time with Laura – Mom goes home a night to take care of Laura and to let her nurse several times. As the morning wore on, Grace felt worse and worse. She seemed to feel very nauseous – each time we tried to give her oral medications or do her mouth care – Grace started gagging and we had to back off. She’s also pretty much stopped eating and drinking. This is expected. She finally did get sick and then took a nap.

After her nap, Mom, Dr. Driscoll, and our nurse Donna worked out a plan that helped. They felt that some of the nausea could be coming from the pain of early mucositis. They gave Grace Fentanyl (a pain killer) and waited 5 minutes until trying the mouth care and oral meds. It did the trick. She got down everything except for 2 pills which they let us skip. Grace seemed to feel better after her nap. She took another spin on the trike, but she tired more quickly this time. We repeated the Fentanyl to get in tonight’s oral meds and mouth care. It didn’t work quite as well, but she was tired.

Grace has started forming relationships with two girls on the unit. We made them cards today. When we asked Grace what she wanted to pray for tonight, she named her new friends. She said she wanted them to feel better soon. She is such a sweetheart!

The docs and nurses tell us that Grace is doing great. Please pray that she will continue to do so. Also, please pray for her mental health. She’s doing okay, but she is asking to go home already….we have a long way to go! We’ve been able to keep her pretty occupied most of the day, and we’re pulling out all the stops with new books, videos, toys, and craft stuff. We’re actually glad that she’s still spunky enough to dislike this place.

Sunday, June 17, 2001 at 11:26 PM (EDT)

Saturday, June 16, 2001 at 10:22 PM (EDT)

Day -5

Today has been good overall. Grace received the last of one of her chemo drugs this morning. The other two will continue on continuous infusion until Monday morning. Each morning Grace’s nurse hangs new bags of chemo and replaces her lines. That means we have about 5 minutes of freedom. It’s great to throw Grace in the air, cuddle, and in general be “normal” for a few minutes while she’s “unhooked.”

Grace’s nausea and vomiting has been worse today. She had an especially difficult episode just before bedtime. We even had to change her dressing for the second time today due to the mess….OUCH. One of the anti-nausea drugs that we’ve always counted on is off-limits now. It is a fairly powerful steroid that can increase the risk of viral infection…something we definitely don’t want!

Grace has been much more active today. She wanted her own trike, so of course we brought it. It does seem to fit her better than the other riding toys up here. She rode with a vengeance. She was moving very quickly. Dad had a very hard time keeping up with the IV pole…literally running.

Thanks so much for the prayers, messages, cards, and care packages. It is great knowing that we have so many people pulling for us! Please continue to pray for all the kids up here. Many of them are fighting for their lives right now. As much as we try to focus on Grace’s needs, it is impossible to not to worry about the other kids as well.

Friday, June 15, 2001 at 10:21 (EST)

Day-6. Today was a pretty good day. Some of you must have been praying for her appetite to return, because she ate quite a bit today. She had a turkey sandwich, peaches, string cheese, a few corn chips, some pasta, and some green peas which we saw again, but that is another story! Grace got sick twice today, but the good news is it seemed to be very isolated and she didn't seem to feel sick at all any other time. The kids on the unit have to do what is lovingly called "mouth care." It involves swabbing out their mouths four times a day with two of three different solutions. One is an antibiotic which smells and tastes awful (and is blue), one is a baking soda/sterile water combo (white), and one is flouride (pink) that is cherry and Grace really likes. The premise is that because the mouth is such a hot bed of germs it is a likely spot for infection with the combo of no white count and mouth sores. Therefore, you begin the care early to set the routine before the problems arise. It will be tough to maintain once the mucousitis (sores) sets in but now it is tough because of the nausea. There is just something about putting a swab dipped in a yucky and smelly antibiotic into the mouth of an already nauseated pre-schooler that is just not smart! The blue solution got her this morning and made her sick. But she recovered nicely and let us repeat the cleaning process. Later we diluted the blue mix with sterile water and were much more successful. Tonight she got sick a second time for no apparent reason. It really hurts her feelings to get sick and she hates the mess, so we tell her that she didn't get sick, the yuck medicine did. Crazy, but it comforts her.

Other than the expected nausea, she is doing great. She continues to be playful and active and enjoyed a brief visit from Laura today. She is a little bored but is still easily entertained. She likes to leave messages for her nurses on the white board on her door and the automatic bed is still good for a laugh. Her blood counts, especially platelets, have dropped a little as expected, but all of her chemistries including kidney and liver function are fine. Two more days of chemo and then we expect the start of the hardest times to hit the beginning of next week.

Laura is doing good as well. She is a little clingy to Mom and Dad whenever separating, but seems to be fine once we are gone. We are trying to switch off as much as possible in caring for the girls so that although there are times that we both have to be there to care for Grace, we try to split up as much as possibe so that each girl gets a parent. We may have to re-think our routine next week as Grace's fight gets tougher, but for now it is working out. Laura and Nana are spending a lot of time walking in the rain with an umbrella. They did it to get the mail one day and now whenever Laura sees the umbrella, she wants a stroll with it, rain is optional!

Thanks to Aunt Rene (and Happy Birthday) for setting up our carpet cleaning at home (to get ready for Grace's return) and to Uncle Mark, Mawmaw and Pawpaw for helping to get it completed.

Thanks for checking on Grace and for all of your continued prayers for a complication free transplant.

Thursday, June 14, 2001 at 10:30 PM (EST)

Day -7 has gone smoothly. Grace began her chemo this morning and has done well. She has had some nausea and has pretty much stopped eating except for her ever-present milk. It is a really tough call about how to handle her nausea... do we give her more anti-emetics and have her sleep 24 hours a day or do we have her not eat and be on a normal schedule? As long as she is gulping down the milk, (actually Lactaid) we are trying to hold off on the drugs. She has only seemed a little sick one time but we can tell that there must be something low-lying there because of the decrease in appetite. It is really sad because she wants to eat and just cannot. Tonight she had chocolate chip cookies, a favorite, and she said that they looked so good but she just couldn't eat. Other than that, it has been hard to contain her! She has played with the controls on the automatic bed, raced another patient on tricycles, made a new friend that is her age, and basically has been bored and has required loads of activities to stay entertained. She has been very cooperative about mask wearing much to our relief. She has apologized over and over for being "crabby",but she has really been good to be so cooped up. As hard as next week will be whenever her marrow is completely gone and she is so sick, it is also hard to have her "hooked up" to IVs whenever she wants to run and play.

Laura came by for a brief visit this afternoon. The girls were all over each other. You would have thought they had not been together in months. Grace was glad to see her and this evening said that she was "tired of playing with Mama and Daddy and wanted some new people to come and play." Frankly, we are all looking forward to seeing everyone that we have ever met on the other side of transplant!

Tonight Grace had a new nurse, Andre. He was one of Jon's favorites on the unit and Grace is already in love with him. He is super nice and really made an effort to get to know Grace by talking and playing with her. He was just what Grace needed tonight. She loves attention and Andre fit the bill. Grace said that she is going to "call Jon Jon and tell him that she has stolen his nurse." What would we have ever done without Jon paving the way for Grace? He is such a blessing to her. Clearly this is an instance of God using a terrible situation for something good by pairing us up with the Powells. Please remember the Powells in your prayers as they prepare to complete Jon's 6 month scans. Please pray that there will be no evidence of disease. Thank you for your continued prayers for a transplant free of complications for Grace.

Wednesday, June 13, 2001 at 10:56 PM (EST)

Day-8 is now behind us! Grace was admitted to the BMT unit this afternoon around 3:00. We had a nice morning at the vacation house. Grace slept a little late and then had a quiet morning.

Grace loves to play in water and that is a challenge these days with her central line. Many children can wear a "plastic" type dressing but these break down Grace's skin badly and so she has to wear a cloth like dressing. So, one drop of water and we have to do a dressing change. Grace doesn't mind them too badly, but they are not the most fun event in the world so we try to keep dry except at bath-time. Anyway, she has been begging to play under the water hose and today we finally relented. She and Laura tugged on swimsuits and sprayed themselves in front of the vacation house. They had a blast. I guess it was sort of a last hurrah before admission.

This afternoon, Grace toured the tiny BMT unit and got her room decorated (ladybugs and lots of photos of friends and family,especially cousins Ben, Hannah, and Jacob!). She met a few of the nurses and seemed to very comfortable with them. While she wasn't thrilled to be back in the hospital, she seemed to be only minimally stressed. She actually ate a huge lunch before heading out and then tonight she voluntarily ate again. She rode on some of the riding toys in the hallway. When in the hallways, most patients must wear a mask. Grace will also have to wear one post transplant. She hates the masks and has always gotten so upset when asked to wear one. That being said, we were shocked whenever she put one on and said that she wanted to go in the hall. She kept it on just fine, but she also insisted that Mom and Dad wear one as well. We have solidarity if we have nothing else.

Tomorrow we will start chemo around 10:00am. This will continue for a total of four days. Please pray that Grace's mental health continues to stay strong and that she has minimal sickness and side effects.
We plan for Laura to visit for a little while tomorrow. Grace already misses her and sent home kisses to her. I am not quite sure how either of them are going to cope with this separation. Laura always laughs the most for Grace and thinks that she is so funny. Grace drives Laura nuts constantly kissing her and dragging her around. Hopefully they will have a good visit tomorrow.

It has been a tough day mentally but now that we have started, we just have to dig our heels in and hang on. As always, thanks for holding us in your prayers.

PS Please keep Austin Price in your prayers as he seems to be experiencing some blood count/hemoglobin issues post transplant. We are not really sure of what exactly is going on or how serious his condiion may be but I am sure that they would appreciate your prayers.

Tuesday, June 12, 2001 at 10:28 PM (EDT)

Sorry for the lapse in updates! We arrived back in Durham yesterday afternoon. We spent the afternoon getting unpacked, going to the grocery store, and trying to convince ourselves that everything was going to be ok. It has been a stressful few days, dreading this final admission and at the same time anxious for it to be here and over. It seems that transplant has loomed before us for so many months now it is hard to believe that we are actually ready to begin. We have been giving Grace bits and pieces of information about what to expect and she seems to understand the big picture. Of course she has no idea of how sick she will be or how long this admission will be, but she has grasped the concept of how wonderful life will be on the other side of transplant. The thought of seeing a day that we do not have to deal with immunosuppression is what we are clinging to tightly. We are trying to prepare for this last hurdle by dreaming of all the things that we can do this fall.

Today we went to clinic for blood work etc. in preparation for tomorrow's admission. We met with Dr. Driscoll to ask last minute questions and to sign the dreaded consent. We really like him and feel very comfortable asking him crazy questions, so we were thrilled to find out that he will be the attending on the unit starting Friday and continuing for 2 weeks. That should see Grace through a good portion of her sickest times. He was very reassuring that although there are going to be some rough times, that he felt that Grace looks good going into transplant (no evidence of disease). Afterwards, we went up to the unit to look around and show Grace where we would be for the next month or so. It is strange but both Mom and Dad just wanted to stay and get started. We are just so tired of having this hanging over our heads. On Monday, we were pretty panicked about getting started, but more and more, we are ready to get it over with. We know that the strength and peace that we feel is not from within us. We know that God is giving us what we need each day to face transplant.

We will try to update regularly and will post hospital room info as we know it. The easiest way to reach us during the next few weeks will probably be via e-mail. Grace will be admitted tomorrow afternoon around 2:00. She will begin low dose heparin and hydration and should begin chemo on Thursday.

Please pray that Grace will come through transplant without complications (especially liver, kidney, and viral threats). Please pray for Laura as she will be separated from us the most during this ordeal (by the way, she took her first stumbling step on Sunday in front of Mom Dad, and Grace.. an answer to prayer because we really didn't want to miss yet another milestone because of this cancer beast). Please also pray for our extended family members...Great grandparents, grandparents, aunts, uncles, cousins, who are also making sacrifices of time spent together during this treatment. As always thank you for being so faithful in your prayers for Grace and all of us. It is so comforting to have such support during this madness!

Friday, June 08, 2001 at 03:18 PM (EDT)

Good afternoon –

The big day is approaching. Mom spoke to Duke’s transplant coordinator yesterday. She confirmed that Grace’s admission date is June 13. The BMT unit is not currently at capacity, so the only delay would occur if something happened with Grace (fever, virus, etc.). We will take Grace into the outpatient clinic on the Twelfth for an exam, blood work, and another viral battery. Since we need to be in clinic on Tuesday morning we’ll move back to the vacation house on Monday afternoon. Here’s the tentative schedule:

June 12, Day –9 Outpatient testing
June 13, Day –8 BMT unit admission, IV hydration, helperin, and antibiotics
June 14 – 17, Day –7 - -4 High dose chemotherapy – induction conditioning
June 21, Day 0 Infusion of PSC - “Bone marrow transplant”

Once the infusion is complete it will be a waiting game. We’ll be waiting for the Grace’s white count to return, indicating that her bone marrow has engrafted. If all goes well, Grace will be able to return to the vacation house after about 30 days on the unit. We’ll have to remain in Durham until Grace is not needing frequent blood and platelet transfusions, she’s off of her IV medications, and is in generally good health. We’re hoping this will be another 30 days.

Please continue to pray diligently for Grace. This will be the most difficult hurdle so far. It is going to be so hard to see Grace laid out in a hospital bed after this long lapse off of chemotherapy. There are many things that could go wrong, but we are the most concerned about liver damage, kidney damage, and infection. Also, remember Laura in your prayers. Although are bringing her to Durham with us, we will probably not get to see much of her during the worst of this treatment. We’re thankful for her grandparents who are moving to Durham with us to care for Laura and to keep up with the daily grind of housework, grocery shopping, and lawn work. Please lift them up in prayer as well. Nana (Susan’s mother) will be coming with us initially. Then Mawmaw and Pawpaw (Jonathan’s mom and dad) will switch off with Nana after about a week. It is going to be a challenging experience for all of us.

We’ll try to keep the website up-to-date as best we can. Thanks for the continued prayer and support.

Wednesday, June 06, 2001 at 02:41 PM (EDT)

Good afternoon –

We’ve been enjoying a slow-paced week so far. Mom and the girls have been hanging out at the house – mainly reading books, watching TV, playing games, and trying to fatten Grace up as much as possible. Our goal has been 35 pounds, but we may miss it by a pound or so. It has taken a lot of prodding to get her to eat this week, so we assume she still has a little leftover nausea from her radiation. Yesterday, at lunch, Grace said she loved to eat…..Mom almost fell out of her chair.

While Grace is inpatient for her transplant she has to drink Lactate milk rather than regular whole milk (her FAVORITE). Everyone told us that they taste exactly the same, but we bought some just to try it. It tasted the same to Mom and Dad. We gave her a glass without telling her anything. After one sip she immediately turned up her nose and said, “you put something in my milk. I want MY kind of milk.” We’ve been mixing regular whole milk with Lactate and she’s been okay. We’ve gotten her up to about 70% Lactate, so she’ll be fine by next week (we hope).

Funny Grace story – This weekend we went to Harris Teeter to pick up a couple of items after our dinner at the Village Soda Shop. We ran into Dr. Tobin and his wife while we were in the store. He’s the pediatric anesthesiologist that let Grace put herself to sleep. We think he’s great! It ends up that he lives in Bermuda Run Country Club (about a mile from us). As soon as we saw him Grace started flipping out. We thought that maybe Grace associated him with going to the hospital, painful procedures, etc. As we left the store, Grace’s diaper fell out of her shorts (fortunately it was clean). Evidently she was trying to tell us something was wrong!!! We’re going to miss the small town feeling of our community. There’s just something nice about always running into someone you know at the drug store or grocery store.

Laura update – It seems that Laura’s news gets neglected in all the hubbub of taking care of Grace. She’s doing great. She gets cuter by the day. Our theory that Laura would walk early was all wet. You’d think that we’d learn to stop making predictions when it comes to our kids! She’s such a good crawler/cruiser that she shows no interest in walking. She mastered going up the stairs several months ago and is working on the going down part. She’s picked up a lot of new words in the past few weeks – side (outside), that (while pointing to anything she wants), bye-bye, candy, dog, and juice, along with many others. Laura has taken up with three “loveys”: her “build-a-bear” bunny, a cotton thermal blanket, and a lamb. She wakes up a couple of times during the night to nurse (things are too nuts and we’re too tired to try to extinguish this right now) and she must have all three loveys before we get her out of her crib! Laura has also become quite the junk food connoisseur. We have tons of it around to tempt Grace, but Laura is always after it! We cave in to her requests a little too often, but the “best odds diet” didn’t seem to do that much for Grace’s health! Why not live for the moment?

Have a good day…..

P.S. Please pray for Hilary. She a teenage girl that was transplanted this winter at Duke. She is in the PICU now and things look very grim.

Monday, June 04, 2001 at 04:44 PM (EDT)

Good afternoon –

We’ve had a good weekend. Grace has felt well. Her appetite is not the greatest. We assume that she must have some lingering nausea from last week’s radiation therapy. We drove to a cherry orchard near Fancy Gap, VA and picked our own cherries. The girls had a great time. Neither of them liked the cherries, but they enjoyed picking them, picking leaves, climbing ladders, and running in the fresh mountain air. We stopped by Uncle Mark and Aunt Rene’s house for dinner on the way home. Grace loved playing with Ben and Hannah. On Sunday, we went on Grace’s patented Tanglewood – Village Soda Shop outing. We visited the horses at Tanglewood and ate dinner and ice cream at the Soda Shop. Grace ate most of a hot dog (her food of choice these days) and almost a whole bowl of Superhero ice cream. We played outside when we got home. Grace got to play with our neighbors Emily – 3 and Jacqueline – 4. They were so cute in Grace’s sandbox!

This weekend was bittersweet. Based on Dr. Driscoll’s advice we’re going into isolation starting today. It is just too great a risk to expose Grace to the real world so close to transplant (although some outdoor activities are still okay). We don’t want anything to delay her transplant and we certainly don’t want a nasty virus to crop up after she starts her high-dose chemotherapy. Grace has sensed the oncoming isolation. She cried much of the way home from Ben and Hannah’s on Saturday. She kept telling us that she was going to miss Hannah and Ben. She also cried last night after Emily and Jacqueline went home. Again, she said she was going to miss them so. This is really hard. All we want is for Grace to enjoy these last few days, but we wouldn’t do anything to jeopardize her health. We feel like the bad guys – turning away family and friends who want to see Grace knowing how much she would enjoy it. We sometimes wonder if this lifestyle will ever end?

Thanks for checking in. Please continue to pray for us.

Friday, June 01, 2001 at 04:50 PM (EDT)

Good afternoon –

We’re back in Advance and on-line again. I’m not sure which is more of a relief. The past few days have gone very well. We had a good weekend. We went to the State Farmers Market in Raleigh on Saturday. Grace and Laura also got to make their own stuffed animals at the Build-a-bear at Crabtree Valley Mall. They had a great time. The sales lady was trying to convince Grace that her bear needed an outfit, but Grace said she liked her bear naked! Laura fell in love with a bunny, so she ended up getting her own animal too. On Sunday we went to Pullen Park adjacent to NCSU. It was nice for Dad to drive past his alma mater. Grace enjoyed the train, carousel, and boat rides at the park. We spent much of the afternoon there. We went to Two Guys Italian Restaurant for dinner. Mom and Dad hadn’t been there since Dad’s graduation day. We couldn’t help but think how our lives had changed since then.

Grace sailed through the rest of her radiation this week. She finished on Wednesday morning. We stayed in Durham an extra day for Grace to have a renal function test. It required a peripheral IV (YUCK), but Grace did fine. We had another prayer answered by the result. Grace had the renal function of a normal kid even the day after receiving radiation to her right kidney! This is certainly good as it pertains to her general health and is crucial in order for her to get the full dose of chemotherapy needed at transplant.

We got home Thursday afternoon. WOW - did Davie County look good!!!!! It sounded good too – the bark of a dog and moo of a cow is a lot more relaxing to us than airplanes screaming and trains chugging! We didn’t realize just how much we missed home until we got there. It’s going to be hard to be away for the summer. It is our prayer that we will be home with a healthy Grace for the fall. That’s our favorite season.

We have a firm date (in medical terms) for Grace’s admission – June 13. If things go as planned, we’ll return to Durham on the Twelfth. We’re hoping to enjoy the next week and a half with few medical procedures. You all have been so good to pray for Grace. Please begin to pray that Grace will go through her transplant with only the expected complications. We remain very hopeful and encouraged, but we are sometimes overwhelmed with the many, many things that can go wrong. She’s going to be so vulnerable for so many weeks. God has blessed us at each step of the way and we are counting on His continued protection of Grace.

Tim and Melissa Powell made us aware of another family whose son is battling Neuroblastoma. Ben is 3-1/2 and he’s from Florida. He also has a little sister, Dana. She’s just a year old. Dad and Grace got to meet Ben and his Mom (Sandie) and Dad (Chuck) this week. Ben is starting his radiation next week. He will be admitted for his ABMT about 2 weeks following Grace, so we’ll probably share a couple of weeks on the unit. Please add Ben and his family to your prayer list.

Thanks so much for those of you who have supported us financially, with meals, yard work, gathering our mail and paper, and especially for your prayers. We are very thankful for having such a caring group of supporters.

Sunday, May 27, 2001 at 09:48 AM (CDT)

Good morning. This is Uncle Wendell,Aunt Tammy, and Jacob writing this journal entry.
The Cains had a thunderstorm in Durham on Friday night and their computer was hit by lightning. They have not been able to access any emails or guest book entries since Friday night.
Grace is doing well. They were able to go to the Farmer's Market yesterday and buy strawberries. Grace also wanted to purchase a pink geranium for the vacation house. They may go to a nearby park today.

If you need to contact them, you can call them at the vacation house phone number.

Thanks for checking in on Grace and for all of your continued support and prayers. Our family appreciates it very much.

Friday, May 25, 2001 at 04:30 ( EST)

Grace has now completed 9 rounds of radiation therapy. She continues to do well and has had none of the expected nausea. She is eating and drinking well and at her weigh in this morning in clinic, had actually gained weight! (That could be due to the fact that we told Grace at dinner last night that Laura was could eat more than she could and Grace was very motivated to compete...whatever works continues to be our motto!) She is lying still better than ever and literally runs into the therapy room each day. The waiting room is filled with many adults awaiting therapy each day. They have all come to know Grace by name as she "entertains" them with games of the "lost cow" (hiding behind the curtains and mooing for Mom and Dad to find her). As the only child there for her particular appt. time, she gets alot of attention from the adult patients which she loves and ultimately makes her want to go back each day to show off. It also seems to provide a nice distraction for some of the sicker patients who always seem to perk up a little and smile at Grace's greeting of "Hellllo Ladies!" We have met some of the nicest people during this whole experience..it really renews your faith in the world! Grace's radiation therapists are so good with her. They have certainly made her therapy as easy as possible. Grace is not one to be rushed; she prefers a complete explanation up front about what is going to happen and then to be given some control over when it will happen. Her therapists are so gentle with her and always take the time to let Grace get settled and play with her a bit before beginning. It has made all the difference in making this a successful time. I think that she will actually miss the routine when we complete therapy next week. This afternoon, Laura went with us to radiation. Grace has been asking for her to go and since we are in and out in about 15 minutes we took them both this afternoon. Nana went home around lunch in order to avoid the Friday afternoon Greensboro traffic. Grace and Laura will certainly miss her as we attempt to finish up radiation next week with just Mom and Dad. Logistically this part of treatment is easy and now that we have seen that Grace is managing well, we are going to try things solo.

We are going to try to find some outside things to do this weekend in order to minimize germs. We are starting to limit Grace's contacts prior to transplant. Also while today's blood counts were fine, her WBC is a little low from radiation which puts her at a greater risk for infection. We may try to visit a farmer's market in Raleigh to get Grace some strawberrries (she loves them) and go to a park suggested by a friend of the Powells that lives in Raleigh. We are going to try to have a low key weekend as Grace does seem a little tired. Her hemoglobin is a little low and we have been having to wake her up early each day to go to the hospital. It will be nice to let her get the rest she needs this weekend while her body recovers from a taxing week. Otherwise, she feels great.

Laura is growing like a weed! She has decided to start adding lots of new words to her vocabulary this week. She has figured out the cause and effect relationship between asking for juice and getting it and she spends much of the day exercising this new-found power over adults and her sister!

Today we enjoyed a visit (outside of course!) from our minister, Greg,and wife Beth and kids. They were passing through the area and dropped off loads of fresh and frozen meals from our church family! It was so good to see faces from home! Thanks to everyone who helped with the food and also for the surprises for the girls! This will greatly help us next week and in the weeks to come!

Have a wonderful holiday weekend! Thank you for holding us up in your prayers! Grace is proof that prayers are answered. Please also continue to pray for Jon's lasting remission. As Grace says," that he will never ever have a germ again, not one!" Please pray also for Hilary as she continues to fight for a complete recovery and for Austin as he begins the transition home next week!

Friday, May 25, 2001 at 04:30 ( EST)

Wednesday, May 23, 2001 at 04:31 (EST)

Grace has now completed 5 rounds of radiation. She continues to do quite well. She has not gotten sick (we are giving her anti-nausea drugs before each treatment) and has not lost any weight. Her platelets and hemoglobin have dropped a little since her baseline counts on Monday, but her white count is down considerably. We will draw labs again on Friday to check her progress. She is doing a fantastic job of holding still without sedation. Yesterday afternoon, she was not so sure that she wanted Mom and Dad to leave the room for her treatment (which we have to do) but she rose to the challenge and did well. We are bribing her like crazy so that we can avoid the general anesthesia. She gets a surprise after each session. We are very thankful for "dollar" stores and the fact that Grace is usually easily impressed; today's surprise was a flexible drinking straw! She loves straws and spent the afternoon entertained!

We are hoping that Grace will finish her radiation as early as next Wednesday, although the possibility for more treatment remains. She also needs to have a renal function test in order to calculate the dosing for her transplant chemo. We are hoping to have everything finished up by next Thursday. Then we will get to come home for at least a week before BMT. Right now our plans are to stay in Durham for the weekend as Grace has a late afternoon treatment on Friday and needs to be back for an early morning treatment on Monday. But of course things could always change.

Thank you so much for your continued prayers. While Grace's radiation is going smoothly, it is a very serious endeavor. 90% of her liver is in the radiation field and 100% of her right kidney is in the beam. Also about half of her small intestines are getting treated as well. While the risks are minimal compared to the chance for cure, radiating these healthy organs increases the chances of complications during transplant, particularly the liver. Please pray that we will not see any of these complications and that there will be no damage to healthy tissue. As always thank you for being so faithful to our prayer requests.

Monday, May 21, 2001 at 10:29 PM (EDT)

Good evening -

We just got our lights back from a power outage here...so I’ll try to be brief. The last few days have been good. Grace was fantastic for her radiation simulation on Friday. Dr. Halperin dropped by half way through the simulation and decided to try a different approach - meaning two separate simulations. Grace was on the table for nearly two hours and she didn’t move a muscle. The first hour she stayed in the room all by herself! For the second hour, Dad donned a lead apron and joined her. They even threw in a surprise CT scan that Grace didn’t even blink at! She’s such a sweetheart!

We came home for the weekend. On Saturday we went to the Greek Festival at the Greek Orthodox Church. As usual the food was great. Laura had her first taste of pork souvlaki (SP?) and loved it. It was nice to run into several friends while we were there. On Sunday, we went to Nana’s for lunch. The weekend would have been a little more enjoyable, but we had many lingering questions from Grace’s simulation on Friday. We were able to speak to Dr. Halperin on Sunday morning and he made us feel much better.

We returned to the vacation house this morning with Nana in tow for babysitting duty. Grace and Laura were agreeable for the return trip. Grace doesn’t seem to mind the "back and forth" routine. It actually seemed to put her mind at ease to know that her house was still on "Westridge Road" as she says. Grace gave us directions this morning. She told us to "turn off of Westridge Road to the white fence road with my cows (Underpass Road), then get on 40 and just ride." She’s pretty close!

Grace had one round of radiation today (sooner than we had expected). She was fine with no anesthesia. It actually went quite quickly. She hasn’t shown any ill effects so far. In fact, she ate like a horse for supper. She starts twice daily radiation sessions tomorrow. She’s scheduled for 19 sessions, but we only anticipate needing 14 - 15. Please pray that any residual NB cells will be destroyed and that all of her healthy tissue will be spared.

PS Check out the new photos.

Thursday, May 17, 2001 at 07:53 PM (EST)

Remission...complete response...no evidence of disease...scans negative for neuroblastoma...she looks great...These are some of the most beautiful words that the parents of a child with cancer will ever hear and we were blessed enough to hear them all today!!! Grace's final scan came back late this morning and showed no sign of disease. After her bone marrow results were clear in February, we had dared to hope that she was free from disease but the tests from the last two weeks have now confirmed it. We are so grateful for all of the prayers that have been lifted up for
Grace and our family this week. It has been a tense week and your prayers have carried us as we have felt a peace that can only be from God. While we are thrilled with Grace's results, things are dampened a bit because we know that the most difficult days of treatment lie ahead. Neuroblastoma is a monster and just because you can't see it on a scan, it is very likely that it is there in microscopic form. Thus, we will attempt now to wipe out any remaining immeasurable cells with next week's radiation and then the transplant. Some Drs. don't like to use the term "remission" when dealing with Nb and instead use the term, complete response, meaning that there is no disease that can be seen. But for today, we are going to rejoice that Grace's tumor was removed in December (2/3 of nb kids don't get their tumor out), and that her marrow has been clear since Feb. and this weeks scans are perfect!

We met with Dr. Driscoll again today for a long time and we continue to feel more comfortable with him. Grace really likes him and named a gray plastic cat for him. (At Brenner's, Grace would give nurses and doctors names of plastic animals, barbie dolls etc.; a sure sign that she liked you).We also met with a child life specialist and practiced holding still for radiation. She made it for 4 minutes today! Please pray that she will be able to do this without Mom and Dad in the room and can avoid being put to sleep!

Tomorrow we will have radiation simulation to plan for the exact spot that Grace will have zapped. Metal markers were placed around the former tumor bed at the time of resection so they will know just the right spot. It should only take a couple of hours but we will see! After that, the data will be entered into a computer to plan the attack. Then her radiologist will calculate the dosage and finalize the plan. It will take a couple of days to do this and she will begin mid-week (next week). During the meantime, we are going to come home for a few days. (More packing..what fun!) We will find out tomorrow when we are to return. Grace will have treatment for 7 days 2 times per day. A special thanks to our new neighbors who are going to be looking after the vacation house while we are gone!

This afternoon we were able to take the girls to a local mall that has an inside merry go round. They loved it! Disneyworld here we come!

Thank you for checking on us and most especially for your prayers! Please join us in a prayer of praise as Grace appears to be winning this fight!

Wednesday, May 16, 2001 at 08:17 (EST)

Today went much better than we had expected. We met with lots of people (insurance,social workers,child life etc.) this morning to make plans for Grace's transplant. Grace needed to be there to meet with some of the people and we were concerned that it would be a long morning because she could not eat or drink because of her sedation scheduled for 1:00. She did really well however and her meltdowns for milk were minimal. She had a few labs drawn and we were once again thankful for the invention of the cental line! We spoke with Dr. Driscoll about a few transplant issues and plan to meet with him tomorrow to sign consent for treatment. While talking with him we did learn that in the course of all of Grace's labs, she has shown positive viral titers to 4 different viruses. These are simply viruses that have presented at some point during her life as colds and also her chicken pox vaccine that she had as a baby. Most kids only are positive for 2 of these viruses and of course Grace has them all! This is a bad thing and means that Grace will be at a greater risk for pneumonia and other complications during transplant. She will receive a variety of antibiotics to hopefully head problems off at the pass, but only time will tell! We were understandably concerned, but Dr. Driscoll sensed us spiraling and helped to reassure us. He said that Grace looks great and that's more important. We like Dr.Driscoll more with each meeting and are beginning to develop a good relationship. Please pray that these viruses will not rear their ugly heads when Grace's immune system is suppressed at transplant! Grace's MIBG went quite well, although we do not have the results yet...hopefully tomorrow am we will hear. We truly felt the power of your prayers as the anesthesia experience was so much better than on Monday. Grace was much calmer and much less combative upon waking. We had a great anesthesia team that did a wonderful job with her and let Mom and Dad be more in control of the situation...something we always like.

Tomorrow we have our meeting with Dr.Driscoll and a play time with child life to help to prepare Grace for the possibility of doing radiation without sedation. Please pray that this comes together. We have been practicing with her each day and she does really well. She has to lie still for about 2-3 minutes without anyone else in the room. If she can do it, we will avoid having to put her to sleep 14 times (2 times twice a day for 7 days). Besides the risks, she will not have to be NPO (nothing by mouth). Her radiation simulation will be Friday and we will see then if we think that she can do it. Please also continue to pray for NED on today's scan. Thanks for all of your prayers and support!

Tuesday, May 15, 2001 at 09:32 PM (EST)

More Good News! We heard this morning that yesterday's CT scan showed no evidence of disease!!! We now have a clean CT scan, as well as a clean bone scan, a clean skeletal survey, and a clean bone marrow biopsy. Tomorrow afternoon's MIBG scan will be the last "big event". We are scheduled for it at 1:00pm. Please pray that nothing will "light up" and that Grace will have an easier time with the general anesthesia than she did on Monday. Thank you so much for all of the prayers that have been spoken for Grace and our family this week! We have felt God's comfort during this anxious process.

Today was very uneventful. We had a clinic visit for Grace to be injected with the radioactive isotope for tomorrow's scan. She also had an EKG (no result yet, but we really haven't asked), and a pulmonary function test (normal, although we felt that Grace's results were not really accurate because she kept singing into the face mask and being really silly-there is a more accurate way to do the test for small children but they hate it, so as long as our result is in the normal range, we are going with it). We also were able to successfully "potty train" her for the urine culture. Grace had begun potty training prior to diagnosis but regressed back to diapers because of feeling so badly and because of the huge amounts of hydration given with chemo. We are holding off until post-transplant although Grace hates diapers and is really embarrassed by them. In order to get a clean sample today we had to either get her to use a potty or she would have to wear what we call the "ziplock bag". It never works because it leaks and our cooperative cherub ends up showing us who has the upper hand and holding her bladder and therefore it takes hours! It is very hard for all involved. Grace was so pleased with herself because she avoided "the bag" today. Mom,Dad, and Grace were all in the bathroom at the clinic clapping and shouting when we realized that everyone outside the door could hear us!! We really didn't care because we were as proud as if she'd won an Emmy!

Tomorrow will be a long one! Grace will be NPO because of the anesthesia and the three of us will be in numerous meetings with hospital staff all morning. Then of course the afternoon will be filled with the 2 hour scan.

Laura is doing great! Pawpaw hung a swing for her and he and Mawmaw have been taking her on walks around the neighborhood. We have met some very nice neighbors and are starting to feel at home here. Tonight we walked to the church playgrond and played until it started to rain. As time allows, we are hoping to find some fun things to do in the evenings to "de-stress" Grace from all the clinic visits. Overall, we are quite content and we know that our peace and strength is from a power much greater than ourselves.

Thanks for checking on Grace's progress!

Tuesday, May 15, 2001 at 09:32 PM (EST)

Monday, May 14, 2001 at 10:27 PM (EDT)

Good evening -

Very quick update - Today went okay. Grace was under anesthesia for much longer than we expected for her scans (CT and bone). It took nearly three hours. We were expecting less than one. Of course we also got started very late (this seems to be a Duke standard operating procedure). Dr. Driscoll called us this evening to let us know that the bone scan came back negative - PRAISE GOD. We will hear from the CT scan tomorrow. Tomorrow she does more minor tests. We have to potty train Grace in the morning in order to catch a urine sample. Good luck!!!

The "vacation house" seems more like home every day. We planted some begonias in the flower bed this afternoon for the entertainment value. Maybe Pawpaw will remember to water them!

Thanks for checking in.....

PS Grace is eating like a horse. She has gained a ½ pound since last Wednesday!

Sunday, May 13, 2001 at 10:12 PM (EDT)

Greetings from Durham and Happy Mother's Day!

After packing on Thursday and Friday, we moved to the "vacation home" Saturday morning. We mainly had to pack clothes, toys etc. as the parsonage is furnished and everything else (dishes, linens, stickers) was graciously left here by the Powells! It definitely reduced our stress to have less to move. Nana and Travis, Mom's cousin, helped watch the girls and get us settled. Travis even made our beds! Thanks Travis! We will be asking for your services again at summer's end!

We spent Saturday evening trying to find a grocery store. Not an easy job. We finally found a scary one and were able to get the staples needed to get us by until morning. Apparently the good people of Durham love spicy fried chicken; there is a Bojangles on every corner! But no drug/grocery stores!

Today Dad and the girls made pancakes for Mom's Mother's day breakfast. Of course, then Grace and Laura ate most of Mom's pancake! We were much more successful at shopping today. We found a decent Harris Teeter. Mom and Grace went in and were so happy to be there that both started to cry. Grace said, "It's just like home Mama!" Grace has adjusted very well, but this afternoon she was a little homesick. After finding HT, all was right with the world again. Mawmaw and PawPaw arrived tonight for a week of babysitting Laura and both girls were so glad to see them.

This week will be busy and a little nerve-wracking as we have tests completed to confirm the lack of disease. Monday will be a CT and bone scan. Tuesday, and EKG and Pulmonary Function. Wednesday, many meetings with BMT people and an MIBG scan. Thursday, meetings with the Drs. Friday, radiation simulation. Also, there will be various other tests in between. Please pray that all of Grace's scans will be clear and that she will have no evidence of disease!

Please also continue to remember the Finbergs in the days to come. Ezra's funeral was today. His parents and siblings have so much to face. Please pray for their strength and rest.

Thanks for checking on our family!

Sunday, May 13, 2001 at 10:12 PM (EDT)

Greetings from Durham and Happy Mother's Day!

After packing on Thursday and Friday, we moved to the "vacation home" Saturday morning. We mainly had to pack clothes, toys etc. as the parsonage is furnished and everything else (dishes, linens, stickers) was graciously left here by the Powells! It definately reduced our stress to have less to move. Nana and Travis,Mom's cousin, helped watch the girls and get us settled. Travis even made our beds! Thanks Travis! We will be asking for your services again at summer's end!

We spent Saturday evening trying to find a grocery store. Not an easy job. We finally found a scary one and were able to get the staples needed to get us by until morning. Apparently the good people of Durham love spicy fried chicken; there is a Bojangles on every corner! But no drug/grocery stores!

Today Dad and the girls made pancakes for Mom's Mother's day breakfast. Of course, then Grace and Laura ate most of Mom's pancake! We were much more successful at shopping today. We found a decent Harris Teeter. Mom and Grace went in and were so happy to be there that both started to cry. Grace said, "It's just like home Mama!" Grace has adjusted very well, but this afternoon she was a little homesick. After finding HT, all was right with the world again. Mawmaw and PawPaw arrived tonight for a week of babysitting Laura and both girls were so glad to see them.

This week will be busy and a little nerve-wracking as we have tests completed to confirm the lack of disease. Monday will be a CT and bone scan. Tuesday, and EKG and Pulmonary Function. Wednesday, many meetings with BMT people and an MIBG scan. Thursday, meetings with the Drs. Friday, radiation simulation. Also, there will be various other tests in between. Please pray that all of Grace's scans will be clear and that she will have no evidence of disease!

Please also continue to remember the Finbergs in the days to come. Ezra's funeral was today. His parents and siblings have so much to face. Please pray for their strength and rest.

Thanks for checking on our family!

Thursday, May 10, 2001 at 11:09 AM (EDT)

Good morning –

Our trip to Duke yesterday was long and tiring, but went fine. Grace was unable to have her EKG and pulmonary function tests due to scheduling issues – they will be rescheduled for next week. We got to meet with Dr. Driscoll and his nurse practitioner, Tracy Kelly. They were both very caring and encouraging. “Dr. Tim” examined Grace and said that she looked great. We also had extensive blood draws and a viral battery (not fun). Grace needed to have her port-a-cath accessed, which we weren’t expecting. Grace was none to happy about it, but we got through it.

We had our radiology consultation late in the afternoon. We were all exhausted by then, so it was hard to hear everything that the docs were telling us and to ask intelligent questions. Unless we find something unexpected next week (pray that we don’t), Grace’s radiation will focus on the tumor bed only. We will have a simulation on May 18. During the simulation they will plan how the radioactive beams will be directed, mark points of reference on Grace’s body using a Sharpie pen (I’m not kidding), and build a full-body mold to fit Grace’s body. She will have radiation twice a day for 7 days following the simulation. We had expected to use general anesthesia for the simulation and each treatment. This is very difficult since she must be NPO (nothing by mouth) for four hours prior to each session. With two sessions daily that means she can’t eat or drink for the majority of the day. They offered us an encouraging option during the consultation. If we can get Grace to remain perfectly still we can avoid anesthesia. We’ve brought a video home that shows the process. We will also be in touch with the child life department to work on strategies to get a 2-year-old to hold still. The hardest part will be the actual radiation sessions since she must be in the room alone! Pray that we can make this work.

We stopped by the “vacation house” on the way home. The Powell’s left it in great shape. We will only need to bring our clothes, personal items, and toys, toys, toys. We meet with Patty Owen from BUMC and our neighbor Mrs. Overcash. Both ladies were very kind. I’m sure they’ll take care of us while were in Durham. I’ll post the address and phone number under “hospital information.”

Today Mom is packing like a crazy person. Nana and Aunt Tammy are helping her. Aunt Teresa is coming by for a visit, Christine is dropping off a gift and Suzanne is bringing dinner over tonight. Our neighbors are going to think were running a crack house! We’ll be moving on Saturday.

Thanks for checking in.

P.S. Another prayer answered. Grace’s right aspiration came back clean. One more test down – 100 left to go!!!

Tuesday, May 08, 2001 at 04:27 PM (EDT)

Good afternoon –

Praise God we have good news to report! Grace slept much better last night. She woke up a few times, but went right back to sleep after her trademark drink of milk. Thanks for praying for her, even when it seems like small stuff. More good news – we have ½ of an initial report (that’s not much, but we celebrate it) from the BIS testing on Grace’s bone marrow. The left hip aspirate showed 0 NB cells/1,000,000. We should hear back from the right hip tomorrow (why they weren’t complete at the same time is a mystery). The clonogenic assay will take several more days to return – from what we’ve been told it is generally fine if the initial result is clean.

We’re planning to take to girls out to eat tonight. We’re leaving for Durham at about 7:30 in the morning (we hope that Grace will arise earlier than normal). She’ll have a physical, blood work, pulmonary function test, and EKG. At 2:15 we have a consultation with the pediatric oncology radiologist. He’ll examine Grace and we’ll review the type of radiation treatment that Grace will receive. It will be preliminary since many of the tests that he needs to make final plans haven’t yet been administered. We will be going on the assumption that there will be no evidence of disease (please continue to pray that this is the case). We hope to learn a lot since radiation is a whole new ballgame for us. We’re going to stop by the “vacation house” on the way home to meet Patty Owen, from Bethesda UMC, and pick up the keys. We’ll drop off a few items and give the place a “once-over” to make sure we bring down the things we need on Saturday.

Please pray that we will have a peaceful week. We are becoming increasingly stressed/anxious as next week approaches. The girls are having several “melt-downs” daily. We’re sure that they are a result of our own stress level. It is really hard to maintain a sense of normalcy under these circumstances. We’ll keep trying………

Thanks for your constant prayers and support.

P.S. Please continue to pray or Ezra. The cancer seems to be attacking his body from all sides. He’s on IV pain meds and hydration. Pray that Ezra’s pain will be fully controlled and that he will be able to enjoy each day.

Monday, May 07, 2001 at 05:08 PM (CDT)

Good afternoon –

We had a good weekend. Gams and Nana came over on Saturday and enjoyed playing with the girls. That evening we grilled hotdogs and hamburgers. Of course we roasted marshmallows for dessert. We made s’mores, but Grace wanted her marshmallow “clear” (Grace’s word for plain). On Sunday we relaxed at the house. That evening we went by Tanglewood to visit Grace’s favorite horse, Buddy. We also went to a Winston-Salem Community Band concert given at Miller Park’s outdoor amphitheater. Grace and Laura had a great time. We had to stop by Lee’s on the way to the concert to get Grace some “Chinese noodles.” Once we got to the concert, Grace wasn’t very interested in eating, but Laura made a pig of herself.

Nana came over today. Mom got her kitchen stuff ready for the move on Saturday. Mom, Laura, and Grace went this afternoon to meet Sandy, Jacob and Mathew at the playground. They had a great time.

Mom spoke to Melissa Powell today. Jon is doing great. They’re quickly rejoining the “real world.” It sounds like the MA treatments at MSKCC in NYC are going very well. Pray that Jon will continue to thrive. We’ve discussed the MA treatments with our case manager at CIGNA. Please pray that there will not be any insurance issues if we decide to pursue MA treatment.

We have another prayer request for Grace. She has not been sleeping well. We’ve repeatedly asked her what’s wrong and she doesn’t seem to know. Occasionally she’ll say something like “my foot hurts,” but she seems to just be saying something to make us leave her alone! We are beginning to think that it is stress related. Grace does much better if she is prepared well in advance for new medical procedures, so we’ve been discussing her upcoming tests, radiation, and transplant. She seems to understand what’s going on, but is very concerned about moving. She keeps reassuring herself that we’re not selling our house, that we’re coming back home, and that Laura is moving with us. Please pray that her fears will be lessened and that her sleep will return to normal.

Have a good day. Thanks for checking in.

Friday, May 04, 2001 at 04:50 PM (EDT)

Good afternoon –

Grace seems to feel stronger every day. She’s eaten more today than she has in a very long time. She still has the sniffles, but it seems that she’s going to recover from her cold like a “normal” kid. Mom took Grace and Laura to Harris-Teeter today. It was one of the few times that she’s taken them both grocery shopping “solo” since Grace was diagnosed. They had a great time. The grocery store has always been one of Grace’s favorites!

Grace had scrambled eggs and biscuits for breakfast. She ate her way through the grocery store (turkey from the deli and complimentary cookies and corn chips) and opened a bag of marshmallows in the van. They stopped by McDonald’s on the way home and got a happy meal. Mom stopped at the first window to pay. As she was driving to the second window to pick up Grace kept asking, “where’s my food.” Maybe we can put on another pound or two before transplant (Grace – not Mom and Dad).

We’ve got a low-key weekend plan. Nana and Gams are coming over Saturday morning. They’re going to spend the day with us, helping to watch the girls while we play catch up around the house. We’re planning to grill out and roast marshmallows. Grace loves Little Bear from Nickelodeon. She recently watched an episode in which Little Bear roasted marshmallows and drank hot chocolate. It’s been an obsession ever since.

Funny story – Yesterday Grace decided she wanted to play in her room alone. About 5 minutes later she came to “show off” her new look to Mom and Laura. She had taken diaper cream and rubbed it on her legs, arms, head and clothes. It was also all over her bed linens. While Mom was trying to clean that up, Laura found a candle and decided to eat it. Mom discovered what is going on just in time to see Laura vomit the candle bite. Grace “helped” Mom clean Laura up. Mom went back to working on the linens and Laura found a way to climb on top of Grace’s table! At this point Mom decided it is nap time for everyone, sheets or no sheets!!!!! Say what you will, but the teen years are going to be a breeze!

Have a great weekend.

Thursday, May 03, 2001 at 03:03 PM (EDT)

Good afternoon –

All is well at the Cain house. We’re getting over colds and praying that we can keep Grace healthy as we get closer to transplant. She and Laura have enjoyed the nice, warm weather. We’ve been able to get out each evening and play in the yard. Grace is still enjoying her plastic Easter eggs. She likes to hide them and makes a big production of making Mom and Dad hide our eyes. Then she takes us to the eggs and shows us exactly where they are! She’s also started hanging the Easter basket off of our bird feeder and getting putting the eggs in the birdbath. Then we all get a chance to toss the eggs in the basket. You would think we were all NBA stars based on Grace’s excitement.

Please have a time of prayer today for two very special kids. Ezra is a 3-1/2 year-old boy with NB. He’s been through chemo, radiation, tandem transplants, and follow up treatment. After being in remission for some time he relapsed. Attempts to get him back into remission have failed. His parents have just made a very difficult decision to discontinue “treatment” and focus on pain control and palliative care. Pray that Ezra’s pain will be successfully controlled so he can enjoy life with his family to the fullest. Also, pray that Ezra’s family will have peace and even joy during this time. Another kid in need of our prayers is Hilary. Hilary has AML and is post-transplant at Duke. Hilary had a very slow but promising recovery from her BMT. She was almost ready to transition to outpatient care when she suddenly showed signs of neurological dysfunction. The docs have run many tests, but are still at a loss as to the cause of her illness. They theorize that it is associated with the many drugs she’s taking. They continue to adjust dosages in hopes of rectifying the situation. She has deteriorated very quickly and is currently in the PICU on ventilation. I’m sure both families could use word of encouragement and prayer. Their websites are www.caringbridge.com/page/hilarycarpenter and www.caringbridge.com/me/ezrafinberg.

We got the initial results from Grace’s bone marrow biopsy and aspiration today. Thank God, it showed NED. We will have the more sensitive BIS lab results next week (hopefully).

Take care. Thanks for checking in.

Tuesday, May 01, 2001 at 04:50 PM (EDT)

Good afternoon –

Another good day! Obviously we have completely lost touch with reality as evidenced by the fact that we can describe a day when Grace had metal rods driven into her hips as good.

Grace slept better last night. She did pretty well with the NPO (nothing by mouth) situation this morning. Her cold seems to be subsiding. Hopefully it will be gone in another day or two. Her bone marrow aspiration and biopsy went well. We had forgotten that it would be bilateral (both left and right hips). We should know the results sometime next week. As a treat we stopped at the fountains on the way out of the hospital and tossed in our pennies. Grace talked us into removing her sandals and letting her get her feet wet. She also got to stop by Zainy Brainy on the way home to add to her growing Calico Critters collection. Grace took a nap this afternoon. After waking up she said that her back hurt. Mom gave some Tylenol and Grace seemed to feel fine.

We again have a plan. This one seems to be a little more concrete. Next Wednesday, May 9, we will take a day trip to Duke for Grace’s radiation consult. She’ll also have an EKG and a pulmonary function test. We’ll move to the “vacation house” on May 12 and the rest of the tests, scans, exams, and simulations will be run May 14 – 18. Grace will most likely receive radiation the week of May 21. At some point after that Grace will go inpatient for her ABMT.

Please pray that with each test we will get the best result possible. We get the impression that the oncologists at both Brenner and Duke anticipate Grace to be in remission, but it is very hard not knowing for sure. It is always nerve racking having outstanding test results.

Take care. Thanks for checking in.

Monday, April 30, 2001 at 05:06 PM (EDT)

Good afternoon –

We had a great weekend. Laura came down with a little cold on Friday, but she seems to be back to her old self today. The girls loved the Baa-Moo Farm on Saturday. Grace fell in love with a lamb named Fluffy. She followed us around the farm like a puppy. One of the goats decided he wanted to snack on Grace’s shirt. That was fine until he got dangerously close to her central line! We went out to dinner at Cities. It was great, but the girls were pretty much wiped out by the time dessert was served.

On Sunday we had the big party at our house. It was fantastic. Grace was so busy playing with her cousins, aunts, uncles, and grandparents, that we hardly saw her all day. Mom asked Grace which was her favorite present. She said that playing with her cousins Ben, Hannah, and Jacob was the best. Grace slept very poorly last night. It seems that she’s picked up Laura’s cold. Pray that she will get over it very quickly, as Laura did, and that it will not affect our plans at Duke.

Grace had a dental exam and cleaning today. Everything looked perfect. She’ll have a bone marrow aspiration and biopsy tomorrow. Please pray that it will go very smoothly and that we will get good results.

Our week of testing at Duke may have moved out one more week to May 14. We’re determined to get a final answer tomorrow. We’ve decided that the entire medical community has decisiveness issues!!!

Have a good day. Thanks for checking in……..

Friday, April 27, 2001 at 09:44 AM (EDT)

Praise God!!!

We’ve started our pre-transplant testing on a good note. We got the results from Grace’s skeletal survey early this morning and it showed no evidence of disease!!! The initial results from her other tests were good as well. We have many more tests to go in the next two weeks, but this has certainly been a great start.

We have big plans for our last weekend at home. Saturday is Mom’s birthday. We’re taking to girls to Baa-Moo Farm in Olin. Baa-Moo is a working farm that offers tours for school groups, church groups, birthday parties, etc. They’re going to give us a “private showing.” We can’t wait to see Grace milk a cow. We’ll try to get pictures. We’re also going out to a “real” restaurant for supper.

On Sunday afternoon were having an “Everything-we’ll-miss-while-in-Durham-for-transplant” party. Primarily, we’ll be having an early celebration of Grace (July 1) and Laura’s (July 3) birthdays. We decided to do this rather last minute – thanks to everyone for altering your plans. An extra special thank you to Susan’s Aunt Nancy for making the Pooh Bear (Grace) and Tigger (Laura) cakes with very little notice. Grace made the cake decision for her sister!

Grace has a dental exam on Monday and a bone marrow biopsy and aspiration on Tuesday. The rest of next week will be spent getting ready for our move. Thanks for your prayers, cards, and guest book messages.

Have a great weekend.

Thursday, April 26, 2001 at 09:42 AM (EDT)

Very quick update –

Grace is doing fine. Her appetite and sleeping continue to slowly improve.

We had a visit from the folks at Make-A-Wish last night letting us know that Grace’s Disneyworld wish had been granted. Pastor Greg and Steve Loos also came by our house.

Today Grace will have an audiogram, echocardiogram, and skeletal survey (a ton of x-rays) at Brenner. She may also need a platelet transfusion. Please pray that we get good results.

Grace’s dental exam had to be rescheduled for Monday due to low platelet count. She is scheduled to have a bone marrow aspiration and biopsy on Tuesday morning.

Please pray for Austin Price. He’s post-transplant at Duke and is experiencing dropping blood counts. This is an indication of possible transplant rejection.

Have a good day.

Monday, April 23, 2001 at 04:50 PM (EDT)

Good afternoon –

We made it through the weekend without fever. Hurrah! Grace is still sleeping restlessly and has had little appetite, but at least she’s not laid out in the bed at Brenner’s on antibiotics. We went to Old Guilford Mill on Saturday. Of course the weather was beautiful. Grace and Laura both seemed to enjoy getting out of the house. Laura was an angel - she didn’t fuss the whole day. We met some really interesting people at the mill. If Grace’s chemo/radiation/BMT doesn’t work out we have another option. A guy from Miami gave us his card. He has a friend that can cure her in 5 minutes! WOW!!! Of course they don’t want to let too many people know about this “cure” because it could get “out-of-hand”. We also had several people ask about our boys. Both Grace and Laura were dressed from head to toe in pink and had on white sandals with flowers on them. One guy even commented on how much he liked the way we shaved our boy’s head. We didn’t realize that it was Freaks at the Mill Day. Mom has now decided that she not only will she swathe both the girls in pink and flowers, but that she will put them only in dresses. Maybe that will work.

On Sunday, we went to the photographer’s studio to order the pictures that we had made in October. We’re timely if were anything. We also did a little shopping. Dad and the girls stayed in the car while mom shopped. We drew labs this morning. Grace’s counts are better – it is amazing what a couple of transfusions will do for you. Her WBC was 2.4 with an ANC of 1100, Hemoglobin – 11.4, and Platelets – 26. We’ll do labs again in the morning to see if her platelets are going to be okay without an additional transfusion.

Dad spoke to the folks at Duke today. We’re finally starting to form a game plan for Grace’s transplant. We had already planned to have a dental exam at Grace’s dentist, and an echocardiogram and an audiogram at Baptist on Thursday. The folks at Duke have asked that we schedule a GRF (renal function testing), a skeletal survey, and a bone marrow aspiration and biopsy at Baptist for next week. We will then move to the “vacation house” on May 5. Grace will complete her testing (MIBG, CT scan, bone scan, PFT, physical, blood work, and radiation consult) May 7 – 11 at Duke. The week of May 14 Grace will either start radiation or be admitted for her BMT. We had originally thought that she would do the radiation first, but it is starting to look like the BMT may come before radiation.

Please pray that all of the timing will come together. Also, begin to pray that following the testing Grace will be declared in remission and that her renal, pulmonary, and heart function tests will be normal. Thanks so much for the prayers, support, and messages.

Friday, April 20, 2001 at 04:59 PM (EDT)

Good afternoon –

Dad dropped a blood sample by Brenner’s this morning. Grace’s counts were horrible: WBC – 0.2, Hemoglobin – 8.0, and Platelets – 0.8. She needed both red blood and platelet transfusions. Mom drew a type and cross and ran it over to Brenner’s (for the red blood transfusion) while Mawmaw and Pawpaw kept Laura and Grace. We had hoped that this would accelerate the transfusion process, but we’re not sure how much it helped. Mom went back over to Brenner’s at 2:45 with Grace and she got started around 4:15. They should be done by 7:30 tonight. No matter how hard we try, it seems that red blood transfusions take a whole day. Grace wants to stop by Krispy Kream on the way home for a treat!

We’re obviously going to avoid crowds this weekend. We’re planning a trip to Old Guildford Mill near the airport. It is an active mill that was built prior to the revolutionary war. The girls both love bread, so we’ll have to buy some stone ground flour and corn mill. Afterwards we may go over to PTI to check out the planes.

Please pray that Grace’s counts will recover quickly and that she will avoid fever. I hope you all have a great weekend.

Wednesday, April 18, 2001 at 04:59 PM (EDT)

Good afternoon –

Good news – there’s little news to report.

Last night we all went to Kmart to buy some things for the vacation house. We actually filled up two buggies! After shopping we went out for dinner. Grace got to choose the restaurant. She picked Cracker Barrel because she thought Laura would like the creamed potatoes. She was right. Laura really “chowed down” as Grace likes to say. Grace ate fairly well also. Her appetite continues to pick up each day.

Mom, Grace, and Laura have spent the day at home today. Grace has learned the art of creating a list. Today when Mom was making a list of supplies we needed home health to deliver and items from the grocery store, Grace was right there with her own pad and pen. She added heparin and sailing (saline) to the home health list and chips and dip to the grocery store list.

Thanks for checking in.

Tuesday, April 17, 2001 at 04:14 PM (EDT)

Good afternoon –

Things around the Cain house are pretty much business as usual. Grace’s appetite has picked up a little bit today. She and Laura took a quick trip to the dry cleaners and to Dairy Queen. Can you believe that we now have a DQ two miles from our house in once rural Davie County? We complain about urban sprawl, but a Blizzard is pretty tasty from time to time. Grace said she wanted some ice cream – of course she had two bites and was through. Before putting the ice cream away, Grace decided to give Laura a bite. She loved it! Then it became a game to Grace seeing how much she could get Laura to eat. When Grace was Laura’s age we were buying plain, full fat, no sugar added yogurt and adding our own fresh fruit. Times have changed!!!

Mom and Dad drew blood (Grace’s, not each other’s) and Dad dropped it by Baptist this morning. Grace’s counts were fairly good today – WBC 2.3, Hemoglobin – 9.4, and Platelets – 51. Her ANC is actually pretty good because her segs and bands were very high. In other word, we have a few more days that we can get out of the house. We’ll get counts again on Friday. A platelet transfusion is likely. We’ll probably squeak by on red blood until next week.

Please pray for Amber today. Amber is a very sweet five-year-old girl who has relapsed with a Wilms tumor. We’ve shared a room with Amber and her mom in the past. She’s currently receiving chemotherapy on a 21-day cycle – somewhat like the regimen that Grace just completed. There’s one important difference. Amber’s therapy will last for 1-1/2 years. Amber has had so much chemotherapy that she seems to be falling into a routine of returning to the hospital with fever/neutropenia after every round. That leaves precious few days at home. Dad ran into Amber’s mother today on the way out of clinic. She has been in the hospital for her own medical problems having developed pneumonia. Please pray for Amber and her mother. Amber has already lost her father to cancer. Her mom is struggling to raise Amber and Amber’s sister on her own. It has to be incredibly challenging.

Thanks for checking in. Have a good day.

Monday, April 16, 2001 at 11:28 AM (EDT)

Good morning –

What a busy weekend!!! On Friday Mawmaw and Pawpaw came over to watch the girls. We again cleaned and organized the house. You can tell, by the frequency of these babysitting sessions, how bad things had gotten. We’ve just about gotten a handle on our “real” house so now its time to start thinking about the “vacation” house in Durham. We were able to go to the Good Friday service at our church. It was so nice to see our fellow Macedonians! On Good Friday, we celebrate a Lovefeast along with the traditional Holy Week scripture readings, hymns, and prayers. Lovefeast is a uniquely Moravian tradition of fellowship that evolves sharing coffee and a lightly spiced bun. We enjoy congregational singing while the “meal” is served and the choir’s anthems while partaking of the coffee and bun. Both Grace and Laura made pigs of themselves eating the Lovefeast buns. Grace prayed the Moravian Blessing beautifully. They will make good Moravian women – we’re so proud! After the service was over, Grace insisted on playing on the playground even though it was after eight o’clock. When we entered the gate to the playground all of the kids came running and calling “its Grace, its Grace, she’s here!!!” They all surrounded her telling her how much they had been praying for her, how much they missed her, and how cool she looked without any hair. It was thrilling to her and to Mom and Dad as well. She woke up during the night saying how much see loved church and playing with the other kids. How we pray for the day that she can see her friends regularly. So often you hear that kids can be cruel – but not these kids – they are incredibly kind.

On Saturday we took the morning to kick back and enjoy each other’s company. In the afternoon we bought a printer for our PC, bought a sofa to replace a ratty one in our den (we don’t feel comfortable bringing Grace home from transplant to it), and bought groceries. On Sunday we went to church. Again, we had a great time. We were able to see even more of our friends. The weather was perfect for the outdoor portion of the service. We had forgotten how much work it is to get young girls ready for church. Now the dress, tights, slip, ruffled panties, and shoes are all times two! Of course as soon as all that goes on it is time for a diaper change. They both looked beautiful in their smocked dresses – Laura in pink and Grace in yellow. It’s so sad that the other kids just can compete with their beauty – just joking! We went to Nana’s for Easter dinner, egg dying and egg hunting. Uncle Wendell, Aunt Tams, and Jacob weren’t able to come because Tammy had the sniffles. When will this immunosuppressed lifestyle end?

We’re hunkering down for a week of very low counts. Grace is already a little cranky and is sleeping fitfully – two sure signs of low counts. She’s also still nauseous and vomited once on Sunday. Keep her in your prayers this week. We will get blood counts tomorrow. We’ll see how good or bad things look.

Thanks for checking in. Don’t forget to pray for Jon today. He’s getting his first of many Monoclonal Antibody infusions. These can be very painful. Pray that his experience will be a good one.

Thursday, April 12, 2001 at 03:59 PM (EDT)

Good afternoon –

We’re actually planning to go home earlier than expected! Grace’s chemotherapy drugs have been moved up a couple of hours each day. Her chemotherapy and hydration should be complete around 11:00 tonight. We’ve asked Grace, and she says she would rather be woken up to go home tonight than wait until tomorrow morning. She may still be awake at 11:00 PM since she didn’t wake up until 11:00 AM this morning! We hope to have her in the bed by midnight. She’s vomited once today, but she perked up as soon as we discussed going home!

Dad has a holiday from work tomorrow. Mawmaw and Pawpaw are coming over to keep “the girls” while Mom and Dad do some more move preparation. We plan to run some errands on Saturday. On Sunday, the Lord willing, we are going to church. Please don’t fall out of your chairs. We’ve only been to church one Sunday since Grace was diagnosed in October. The majority of our Easter church service is held outside, weather permitting. That’s a perfect “germ-free” setting for Grace. Her counts will probably be questionable by Sunday, but if she feels like it we’re going for it. We’re running out of Sundays before our move! Please pray that everything will work out.

The “vacation house” is coming along very nicely. Yet again, the Powell’s have paved the way for us. They left much of their kitchen items, furnishings, rugs, linens, etc. behind. The church is continuing to make the house into a fully furnished, “corporate housing” type of facility. They’re even getting a crib, mattress, and linens for Laura. All we have to bring are our clothes, personal items, Dad’s work PC and peripherals, and the girls’ toys and stuff (it is the girls “toys and STUFF” we worry about). As our move draws closer we’ll post the phone number and address in Durham.

Please take a moment to reflect on Christ’s death and glorious resurrection on this Maundy Thursday and throughout the remainder of Holy Week.

Wednesday, April 11, 2001 at 05:01 PM (EDT)

Good afternoon –

We thank God that this is our last round of standard chemotherapy. Grace is doing okay, but she’s very anxious to be home. She hasn’t felt like doing much today – refusing to even get out of her PJ’s and into her clothes. We wonder if she’s also picking up on our feelings of uncertainty knowing that were moving on to a new mode of treatment.

A simple urine screen indicated trace amounts of blood in Grace’s urine early this morning. A follow-up urinalysis was perfectly normal. The chemotherapy drugs that she’s taking this round rarely cause bladder bleeding, but we’d rather be on the safe side and check!

Please continue to pray that we will make it through one more round with no ill effects on Grace.

Have a good day. Thanks for checking in.

Tuesday, April 10, 2001 at 05:03 PM (EDT)

Good afternoon –

Things are going well this week. Grace hasn’t been sick. She seems more anxious to get home this visit. We think it is because she had to be in the hospital 3 extra nights recently for fever. Don Timmons, Grace’s Make-A-Wish contact, came by to visit Grace today. He brought her some nice gifts and visited for a little while. We’re praying that the week will pass quickly and Grace can come home first thing Friday morning.

We spoke to the transplant coordinator at Duke today. We have a little better understanding of what to expect. In a couple of weeks we will have an audiogram and an echocardiogram here at Baptist. We will also schedule a dental exam with Grace’s regular pediatric dentist to make sure that she has no oral infection potential. Following those test we will move to Durham. She will have a very full week of testing including repeats of the CT scan, bone scan, MIBG, bone marrow aspiration, extensive blood testing, a physical, and a radiation consult. The testing should be completed the first or second week of May. Please pray that all of the tests will come back negative indicating NED (no evidence of disease). This is critical. Following the testing, Grace will either go directly to BMT or have radiation therapy. We anticipate that the radiation will come first, but that is far from certain. We’re planning on one to two weeks of radiation followed by two weeks off for recovery. The BMT will then follow. We’ll continue to give updates as we know more information.

Thanks for checking in. Have a great day.

Monday, April 09, 2001 at 05:09 PM (EDT)

Good afternoon –

Wow - what a nice weekend. We went to an Easter egg hunt for employees/retirees of Westinghouse (Pawpaw is a retiree). It was great. MawMaw, Pawpaw, Uncle Mark, Aunt Rene, Benjamin and Hannah were all there. We took a whole roll of pictures. Afterwards we did a little shopping and errand running. On Sunday we went to Tanglewood to see Buddy (Grace’s favorite horse) and to play. We also went to Village Soda Shop (surprise, surprise) for dinner and ice cream. We all came home with sun on our faces and dirt everywhere else. Grace and Laura had to be tossed in the tub while their clothes went in the wash.

Grace was admitted for chemo today. She was borderline with her WBC, but her ANC was just high enough to start. We have a roommate. We had hoped to be in an isolation room for our “swan song”, but our “roomie” seems to be a sweet girl about Grace’s age. It was really difficult to go in this time. The beautiful weather has made it even harder than missing holidays. We’re still battling with accepting our new “normal.” I’m not sure that will ever come.

Thanks to each of you who have prayed for the Powell’s. They’ve decided to give MA treatment a try. If things go well, they’ll continue. If not, they’ll stop with one round of therapy. Pray that everything will come together easily for them this week. Also, please pray for our transition to Duke. We’re trying to put together dates for testing, radiation, transplant, etc. Pray that this transition will go smoothly and that there will be little downtime in Grace’s treatment. We want to keep her therapy coming on a timely schedule.

Thanks for checking in……….

Friday, April 06, 2001 at 010:51 PM (CDT)

We are all tired, but we did it! We got all three bedroom closets cleaned out today. Dad took the day off from work and we just now stopped working. PawPaw and MawMaw played outside with the girls most of the day and we barely stopped to eat. We are really feeling the pressure to get our house as clean as we can before we leave for transplant. Also we really needed to pack up newborn clothes and move Grace's outgrown clothes over to Laura's room. It's not perfect, but at least now we feel like we can find the things that we need to pack more easily. We need about a month of days like today !

Grace and Laura both had a good day today. Before bed they took a bath together, one of their favorite activities. Then they both put on fresh PJs and went sound asleep. There is just something irresistable about clean and sleeping children...It was one of those rare times that Neuroblastoma seemed far away.

We have a big prayer request for Jon Powell. Now that he is finished with the majority of his BMT care, there are some options available for follow-up. One of the treatments that we, and the Powells, are considering is a clinical trial at Sloan Kettering in NYC. It is called monoclonal antibodies and it is showing promise in reducing the relapse rate and thus improving the cure rate in Neuroblastoma. However, the data is far from conclusive, and while there are no limiting side effects like chemo, there is extreme pain involved. In addition, the treatment would require frequent trips to NYC. We have asked the opinions of our onocologists at Brenners and Duke and they are simply not able to advise us completely because the long term data is just not there. Of course, the researchers in NY believe that this treatment is fantstic and it is really hard to discern what is real and what is is merely their excitement about their latest project. This is ultimately going to be a parental decision and quite honestly it is driving us mad. We (Cains/Powells) are tired. We want our lives and the lives of our children back. Jon did not get to enjoy summer in 2000 and he wants to stay home and play. We do not want more treatment that could last for several more years. But what if our kids relapse and we didn't do this? What if they relapse anyway and we spent all this valuable time on more treatment? What if they are cured post BMT and again wasted time. We have to stop treatment sometime but at what point? The other catch is that if Jon is going to participate, he needs to start in 2 weeks. The Powells are praying to do the right thing, but still are not sure of what to do. Please be in prayer that God will reveal to them what they need to do, that they will have peace with whatever decision they make, and they will have the strength to interpret the huge amount of information being thrown our way. Sometimes this battle makes you so weary that it is hard to recognize answers when they come. Please pray for God to lead our families in His will. Thank you for your dedication in praying for our children. It is a comfort always. Enjoy this beautiful weekend!

Thursday, April 05, 2001 at 04:28 PM (CDT)

Good afternoon –

It has been a pretty dull week (interpretation – GOOD) around the Cain house. Mom and the girls have been doing their normal stuff during the day. Grace has been meeting Dad at his car every night. Last night Grace fell on the sidewalk in front of the house on the way to greet Dad. She scraped her knees and palms. It was nice in a weird kind of way. Being a preschooler is supposed to be all about scraped knees and drying eyes. Of course in the normal world you don’t have to worry about getting the bleeding to stop because you have no platelets!

Dad’s taking off work tomorrow and we’re getting Mawmaw and Pawpaw to come over to baby-sit. No – we’re not going to dinner and a movie – we’re cleaning out and organizing the closets. We have several jobs that must be done before we can even think about packing for our move. It will actually be very gratifying to have all of our stuff were it belongs. Anything that’s not nailed down or hasn’t been used/worn in the past 6 months is going to Goodwill or the attic. We’ve simply run out of space. What’s going to be worse is the move back home. I’m sure after 3 months in Durham we’ll have 2 houses full of junk! Kids should come equipped with their own storage unit.

Grace has decided that April Fool’s Day should extend for the entire month. She’s constantly telling us there’s a duck on the table or a monkey in the bathtub. She called Dad at work this morning to tell him that there was a chicken on his desk! Sometimes she forgets the “APRIL FOOL’S” part until you remind her.

We’re planning to go to an Easter egg hunt on Saturday with Mawmaw, Pawpaw, Uncle Mark, Aunt Rene, Benjamin and Hannah. We may also do a little shopping for a sofa for our den. We need to replace our old dusty one before we return from transplant. Be assured that we will not be doing our normal research and comparative shopping!

Thanks for keeping your thoughts and prayers with us.

Tuesday, April 03, 2001 at 04:39 PM (EDT)

Good afternoon –

Grace’s counts were in good shape today – WBC – 13.2, Hemoglobin – 11.2, and Platelets – 28. We can discontinue Neupogen after tonight and we will not need any more counts until Grace is admitted for chemo next Monday. She’s feeling well and were hoping to have improved weather so everyone can get outside!

Mom took Laura for her 9-month checkup today. She’s in great shape. She’s much smaller than Grace was at this age (50% for height and 25-50% for weight). She’s only had a couple of immunizations and she did great with them. She will not be getting the rest of her immunizations until after Grace has completed and fully recovered from her transplant. Grace will be so immuno-suppressed during her transplant that Laura could infect her from a live-virus immunization. Mom and Laura also went to Toys-R-Us, Benphil’s Children’s Clothing Store for the final touches on Easter clothing, and William-Sonoma for a wedding gift. It was nice for Mom and Laura to spend some time together. She was perfect the whole time.

Nana came over this morning to watch Grace while Laura and Mom went to the doctor and ran errands. They had a great time once Grace decided to get up (10:15).

Thanks for those of you that have been praying for Jon Powell. Praise God all of his testing and scans at Sloan-Kettering came back negative!

Thanks for checking in…….

Monday, April 02, 2001 at 04:59 PM (EDT)

Good afternoon –

Grace was discharged as planned on Saturday. She was so excited to get home while there was still a little sunshine left to enjoy. She didn’t want to come in when it started raining, so we didn’t make her. Can you believe that we let her run around in the cold, March rain when she had just been discharged for fever? It didn’t seem to hurt her any. We all crashed in the den afterwards – Mom and Dad watched a corny “Lifetime” made-for-TV movie and the girls played with toys and each other. We let everything else go (including all of the bags in the van that needed to be unloaded and unpacked). It was a nice treat.

We had a very calm Sunday. Grace was itching to get out so we took a ride in the car. Mom went in Zany Brainy to buy Easter gifts and surprises while Dad and the girls stayed in the germ-free zone of the van. We strolled the sidewalk for a little while, but the wind got the better of us and we had to warm back up in the van. We all went to Harris-Teeter together. Grace was thrilled. She’s always loved going to the grocery store. It was quite a job keeping her close at hand. Today, Grace, Laura and Mom went to the park to see their favorite horse, Buddy. They also went to the church playground.

We drew labs this morning and Dad dropped them off. Grace’s counts are improving due to the continued Neupogen and transfusions. Today she had – WBC – 3.2, Hemoglobin – 11.3, and Platelets – 31. If her platelets continue to drop, she will need a transfusion tomorrow. We’re praying that she will “turn the corner” and her counts will returns to normal on their own. We’ll to get see after tomorrow’s counts come back.

Please begin to pray for our transition to Duke. We’re beginning to firm up plans for our move to the “vacation house” and having medical care provided by the team at Duke. It could be as little as a month until moving day! It is our prayer that the move will go smoothly and that Grace will experience little downtime in treatment due to transferring the type and provider of her care. A couple of more prayer requests:
- The Powell’s – they get back Jon’s test results tomorrow
- The Price’s – Austin is nearing 100 days post transplant and certainly hopes to move home
- The staff and families on the BMT unit – so many children have died in the past several weeks

Thanks for checking in……..

Saturday, March 31, 2001 at 12:55 AM (CST)

Great news!!! Grace has a whopping .2 WBC! It is a horrible count, but good enough to resume our isolation at home for a few days. Grace's hemoglobin is still low and since it takes quite some time to recover, she is currently having a transfusion "for the road"! Her platelets are continuing to drop, but hopefully she will be making her own soon as her WBC continues to rise. She may need a transfusion in a couple of days, but platelet transfusions are fairly quick and easy. We are just excited to not lose the entire weekend. We should get home by late afternoon.

Once again, thanks to our faithful friends, especially our church family for all of your support! Your meals, surprises for Grace, and especially your prayers make this craziness so much more manageable. Also a special thank you to the Men's Fellowship at Macedonia. This group had a BBQ benefit for Grace recently and raised an overwhelming amount of financial support. We know the effort that was involved as well as the time and we were so touched by their generosity. (The BBQ was tasty as well!) An additional thank you to our brothers and sisters in Christ for the love offering. We are so humbled and proud to be a part of such a loving church family. While we have not had a great deal of financial challenges up until this point, whenever Grace is transplanted there will be financial issues. Jonathan does plan to continue to work from Durham prior to the transplant, but there will be a period of time while Grace is in-patient and thereafter, that he will be taking FMLA. So we will have a loss of income for several months in addition to essentially an extra house payment to maintain a residence in Durham. Everyone's generosity has enabled us to simply not worry about the financial aspect of transplant. That is in itself a precious gift. It frees us up to concentrate only on Grace and Laura. In addition, Grace's treatment continues to take its toll on her body and we anticipate that she will have some special needs after transplant that may or may not be completely covered by insurance.

Another thank you to Miss Jenny at the Clemmons library! Before diagnosis, Grace and Mom (and for a few weeks, Laura), were Wednesday regulars at toddler story time. It was truly the highlight of Grace's week. Of course, now that type of situation is not immuno-suppressed friendly and Grace cannot attend. She speaks of it often and asks to go which is one of the many sad things about being on chemo. Well, Miss Jenny heard about Grace from one of Grace's buddies, and sent Grace the coolest package! There was a book made by the other kids, lots of stickers and coloring pages, and Grace's favorite...a huge number of craft projects!!! She has spent today making craft after craft after craft!!! Thank you so much Jenny! We are counting down the days until we return! We really appreciate all the time you took putting the package together...Grace was thrilled!

Please add the name of Victoria to your prayers. She is a beautiful 4 year old that was admitted to Brenners this week after a series of illnesses and now a swollen neck (due to enlarged lymph nodes). Her family is anxiously awaiting a diagnosis as Victoria undergoes a battery of tests. This family has been attending our church and Victoria attends the preschool. Please pray for a non-serious diagnosis and strength and healing for this family! Thank you for your prayers for us and the children that we meet on this journey!

Friday, March 30, 2001 at 04:26 PM (EST)

Good afternoon –

We’re still stuck in the hospital. Grace has no fever and is feeling fine, but we have to wait on her white count to start recovering before we get to “blow this joint,” as Grace likes to say. She still had no white count today, but her other counts were okay – WBC -.01, Hemoglobin – 8.7, and Platelets – 103. It is almost harder to keep her pinned up when the weather is so nice.

This afternoon Mom noticed a bruise and knot on the side of Grace’s head. She and Grace’s nurse were concerned about it. They couldn’t imagine where such a place could have come from. Mom called Dad at work and he had to admit that he had dropped a full cup of milk on Grace’s head last night at bedtime. Dad stays in trouble!

I would ask that you pray for Austin Price. Austin had a BMT at the same time as Jon Powell. The Price’s are still in Durham awaiting 100 days post-transplant. Austin had a cord blood transplant which requires a minimum of 100 days in Durham. Please pray that Austin will continue recuperate and that he will be able to return home when his 100-day “sentence” has been served. Check out his web page at www.caringbridge.com/nc/austinprice. Austin’s mom does a great job of networking with the other transplant families and often gives updates on his website.

Have a great day. Thanks for checking in…….

Thursday, March 29, 2001 at 04:55 PM (EST)

Good afternoon –

Unfortunately, Grace finally tipped the scales on her fever last night. Her fever bumped up over 101 and we had to take her in last night. Of course her fever had dropped somewhat by the time we got to the hospital, but they decided to admit her and start IV antibiotics anyway. She also needed another platelet transfusion. She had slept rather restlessly until 2:30 when the nurse started her transfusion. She woke up very upset – the way she acts when she’s nauseous. I asked for our old stand by Phenergan, and Grace seemed to feel much better. She slept soundly until about 11:00 this morning!

Grace seems to be doing fine. It’s amazing how much good a transfusion can do. Her counts are: WBC – 0.1, Hemoglobin – 8.2, and Platelets – 134. We will probably have to stay in until at least Saturday, with Sunday or Monday being a more likely discharge date. The weather makes it a little easier to bear having her cooped up in a hospital room. We hope to be back home by the time the weather breaks.

Laura is growing up before our eyes. She’s become very mobile and we feel that she’ll be walking in another month or two. She started saying Mama and Dada fairly predictably, but her favorite word is Baa (that’s what she calls Grace). On Tuesday night Grace and Laura took at bath together (one of their favorite activities). After quite some time, Dad asked Laura, “Would you like to get out and put on your pajamas?” She smiled and said, “No no.” This may have been a coincidence, but we thought it was hilarious. Even Grace heard her and thought it was funny.

Thanks for your continued prayers and support. Please continue to remember Jon as he is being re-assessed prior to receiving Monoclonal Antibody treatments.

Wednesday, March 28, 2001 at 04:44 PM (EST)

Good afternoon –

Grace’s counts have continued to drop: WBC – 0.2, Hemoglobin – 6.8, and Platelets – 31. She needed to have a red blood transfusion today. Her platelet count was still a bit high for a platelet transfusion, but we went ahead a got one while we were in day hospital. It was sort of like getting milk while you’re already at the grocery store buying bread! She also had her central lines cultured to check for infection since her white count is non-existent. Thank God her fever has remained just under the threshold for requiring IV antibiotics. We started an oral antibiotic today (Bactrim) that she takes routinely on Wednesdays, Thursdays, and Fridays as a preventative measure. Maybe this will help protect her from any infection - it can’t hurt.

Grace’s cheeks took on that rosy glow associated with having a few red blood cells before she even woke up from getting her transfusions. She did fine and asked to stop for a happy meal on the way home.

Thanks for the prayers lifted up on Grace’s account. Please continue to keep her in your thoughts and prayers.

Thanks. Gave a great day……..

Tuesday, March 27, 2001 at 04:55 PM (EST)

Good afternoon –

We’re hanging tight around the Cain house. Grace’s counts were low again today. She has a WBC of 0.2 and an ANC of 0, her hemoglobin remained fairly steady at 7.4, and her platelets continued to drop to 54. On top of that she as been flirting with the temperature threshold that would cause her to be admitted for fever. With that being said – she’s doing amazingly well. She’s been a somewhat lethargic today, but she’s certainly hasn’t been laid out in the bed.

We will take counts again tomorrow. Something will most likely give. She’ll probably need red blood, platelets, or both. We’ll be very happy if her fever stays under 100 and we can avoid an admission. I guess we’ll just have to wait and see.

Aunt Tams is providing a nice supper tonight. Great food, no cooking, and little cleaning – that can’t be beat.

Please continue to pray that Grace can squeak by without being hospitalized. Thanks for checking in……….

Monday, March 26, 2001 at 04:28 PM (EST)

Good afternoon –

We had a great weekend. Home health came out Friday night to provide supplies for the Neupogen infusions and to train us on using the infusion pump. It took 3 hours (2-3/4 hours of paperwork) to get it done, but we were fully trained. Everything went smoothly and Grace was thrilled to get by without a shot!!! We all went to Nana’s on Saturday to celebrate Dad’s birthday. Grace and Laura had a good time. On Sunday we stayed home. Grace and Laura gave Dad their birthday gifts. Based on the number of clothes that Dad got, he must have been looking pretty raggedy. Mawmaw, Pawpaw and Aunt Teresa all came over in the afternoon and stayed for a supper of take out pizza. We know how to treat our company to a feast!

We drew labs this morning and Dad dropped them off at the hospital on his way in to work. The counts weren’t too good. Grace’s platelet count was fair – at least a couple of days away from a transfusion. Her hemoglobin was in transfusion territory and her WBC was very low with an ANC of zero (nothing to fight infection with). After seeing the numbers, we were glad that we kept Grace in yesterday. We decided to hold off on the red blood transfusion for today because we hadn’t drawn a type and cross this morning. Unfortunately, based on her counts, there’s also a good chance that Grace will end up back in the hospital for fever. We’ll draw labs again tomorrow morning – this time a CBC and a type and cross. If her hemoglobin has continued to drop we’ll probably go ahead and transfuse even if she doesn’t have fever. If she ends up with a fever we can get the red blood while we’re in for antibiotics and save a trip. Despite her counts, Grace continues to feel remarkably well. She’s a little cross and has been restless at night, but otherwise she’s okay.

Please pray that Grace’s counts will stop plummeting. Also pray that she can avoid fever and the inevitable 4-6 day hospital admission associated with it. Please keep Jon in your prayers as he goes through the assessment tests at Sloan-Kettering in NYC this week.

Thanks for the prayers and support.

Friday, March 23, 2001 at 04:55 PM (CST)

Good afternoon –

Grace is doing well. She was discharged last night around 7:00. We stopped by for “Chinese noodles” (beef lo mein) at Lee’s on the way home. When we got home, Grace sat down at the table and ate a plateful. She took a bath and then was ready for bed. Everyone slept like rocks last night in their own bed!

Today, Dad’s coworkers took him out to lunch for his birthday at City Grill. Mom, Laura and Grace were invited also. We had a great time and the girls behaved themselves for the most part. Mom and the girls when to the mall after lunch. They shopped for Dad’s birthday present.

We have plans to celebrate Dad’s birthday at Nana’s on Saturday night with Aunt Tammy, Uncle Wendell, Jacob, and Gams. I’m sure we’ll have a great time. Home health will come out tonight to start the nightly Neupogen infusions. We will continue the infusions for about 10 – 12 days. We’ll have to draw labs for a CBC on Monday morning. Otherwise, we should have a procedure-free weekend.

Keep the Powell’s in your prayers as they prepare to spend next week in Manhattan.

Christopher update: Christopher is doing much better. We spoke to his mom right before we were discharged last night. He was back from the PICU and should be discharged today. They think that he had simply overeaten shortly post-op. The docs suspect that his digestive system hadn’t “woken up” yet from the anesthesia and he was unable to process the large amount of formula in such as short period of time. Thanks for the prayers and concerns.

Thanks for checking in. Have a great weekend.

Thursday, March 22, 2001 at 04:49 PM (EST)

Good afternoon –

Grace should be discharged by at least 8:00 tonight. It has been a pretty good admission. Last night was rather eventful. Grace ate a really good supper and then she vomited all of it back up. I’m sorry for the mental picture. She recovered quickly, but she didn’t want anything else to eat. Fortunately the vomiting episode caused us to step up her anti-nausea drugs. Grace got a dose of Phenergan which causes her to go into a deep sleep within about 15 minute (it’s great stuff, we always use it at night in the hospital). Just a few minutes after Grace had gone to sleep, our roommate, a 3-1/2 week-old boy, started having trouble breathing. The nurse had to start bagging him and called a code blue. The critical care team rushed in and intibated and stabilize the boy. He was okay, but there were a few scary moments. His has been moved to the PICU and as best we know is now stable. Please pray for Christopher and his family. We don’t know a lot about his condition, but he and his family need your prayers. Thanks to the Phenergan, Grace slept through the whole event.

Dr. Chauvenet has worked very hard to get Grace’s Neupogen administered IV through her central line. We will have home health come out the house on Friday, Saturday, and Sunday to supply diluted Neupogen and infusion pump. They’ll train us on the procedure and using the equipment. We’re going to turn the 2 minutes required for the injection into a 45-minute affair, but it will be well worth it to avoid the injections. Of everything Grace has been through, she hates the injections most of all.

Thanks for checking in………

Wednesday, March 21, 2001 at 03:20 PM (CST)

Good afternoon –

Things are going fine at Brenner’s. Grace has tolerated her chemo very well. She hasn’t been sick and she’s even eaten a little each day.

She’s been cutting up with the nurses and doctors all week. She assigns one of her animals or Barbies to each staff member. As examples, Dr. Chauvenet is a plastic hippopotamus and Nurse Lindley is Pink Barbie. Dr. C is working to get her Neupogen administered IV through Grace’s central line rather than as an injection. If he succeeds, he has insisted on being upgraded to a better animal species. Mom and Dad certainly hope we can add IV medications to our list of at home care skills. We are just as anxious as Grace to drop the daily shots.

Mawmaw and Pawpaw bring Laura by each evening. That’s the highlight of Grace’s day. They play together well, but we have to watch Laura closely so she doesn’t tug at Grace’s lines. Each day a member of our church had delivered a home cooked meal. It’s a part of the day that Dad certainly looks forward to!!! Thanks for your continued generosity.

Not much else to report – were still planning to be discharged tomorrow. It does appear that it will be late afternoon before we complete the chemo and can go home.

Thanks for the continued prayers and support. Have a great day.

Tuesday, March 20, 2001 at 12:18 AM (EST)

Good afternoon –

We’re back home! We left for Blowing Rock on Friday afternoon as planned. We were slightly delayed due to a dead battery in the van. After a quick jump from our pickup we were off and running. We had the battery checked out and it was fine. Just one of life’s great mysteries I guess.

We were so pleased when we got to the Vance’s cabin on Friday night. It was so nice to be away from home and not at a hospital. The cabin is BEAUTIFUL. We decided that we wouldn’t be dreading transplant if we could simply stay at the cabin and have Watauga General set up a pediatric BMT program! We got settled in on Friday night. On Saturday morning Grace woke us up and wanted to open the shutters. We looked out on the Vance’s restored, full-sized caboose. Grace was beside herself with excitement. We could scarcely get her fed and dressed before she was out the door to get a closer look. We went into Blowing Rock and visited many of the shops. Grace’s favorite was the fudge and ice cream shop. We also played in the park until the windy conditions got the better of us. We had dinner at Mom’s favorite – the Daniel Boone Inn. On Sunday, Dr. Vance took Dad and Grace on a ride in the “Pug” (see the new pictures) and on an inside tour of the caboose. We were sad to leave, but we did stop by to the Candy Store at Mast on the way home. It was such a great trip and the Vance’s warm southern hospitality made us feel at home.

We grudgingly took Grace back to Brenner’s on Monday morning. Mom and Dad dreaded it much more than Grace. She started her chemo yesterday afternoon and things have been progressing nicely. She hasn’t been sick and seems to feel well. If everything goes as planned we should be home on Thursday afternoon. We had a roommate last night but they’re going back to the Ronald McDonald house today while receiving more outpatient radiation. Noelle is a precious 5-year-old girl. Grace has really enjoyed having some entertainment! Please pray for Noelle. She has rhabdomyosarcoma, a childhood soft tissue cancer. She’s currently in the middle of 5-1/2 weeks of radiation and chemotherapy. Her chemo will continue through much of this year. She lives with her mom, dad, and brother in Asheville.

Have a great day. Thanks for checking in……..

P.S. Jon will be repeating all of his scans at MSKCC in NY next week. Pray that he will continue to show NED (no evidence of disease).

Friday, March 16, 2001 at 1:26 PM (EST)

Good afternoon –

We’re almost ready to head out for the mountains. We’re looking forward to a nice weekend away from home (and not at the hospital). We’ll come back just in time to head over to Brenner’s for Chemotherapy the next day. Grace will be inpatient Monday through Thursday. We got blood counts again today. Grace’s platelet count has finally returned to a normal level. Her WBC is a little low, but that tends to happen a few days after Neupogen has been discontinued. She’s been feeling well and enjoyed a visit yesterday from Nana and Jacob.

We have many reasons to praise God today! The Powell’s made their way back home yesterday. Jon was thrilled to be home and will get to celebrate his third birthday at home today! The insurance company also approved Jon’s monoclonal antibody treatment at MSKCC yesterday. Thanks for the many prayers that have been lifted for Jon and his family. Please continue to keep Jon and his family in your prayers as he begins yet another phase of treatment, this time in NYC.

Have a great weekend. Thanks for checking in………

Wednesday, March 14, 2001 at 04:21 PM (EST)

Good afternoon –

We’re still cruising along without a lot of news. Mom’s taking advantage of the downtime to catch up on routine dentist and doctor appointments for herself. It amazing how quickly those things stack up when you’re not taking care of them! Aunt Rene, Benjamin and Hannah joined Mom, Laura and Grace for the standard Tanglewood Park and Village Soda Shop outing yesterday. They had a great time. Grace had counts again yesterday. Her WBC and hemoglobin continue to be normal. Her platelet count is rising, but it’s still too low to start chemotherapy. We’ve e-mailed Dr. Chauvenet and decided to take counts again on Friday, but to delay her chemotherapy until next Monday. Unless something unusual happens, Grace will be inpatient next Monday through Thursday.

Since we have another weekend off and Grace is no longer neutropenic, we are planning a trip to the mountains. We expect to leave on Friday afternoon and return on Sunday night. One of Dad’s coworker’s parents have made their log cabin available to us. The cabin is just outside of Blowing Rock towards Grandfather Mountain. We are excited to just get out of the house for the weekend. Before Grace’s diagnosis taking frequent day trips and weekend getaways had spoiled us. This long “dry spell” has left us feeling withdrawal symptoms! We’ll definitely visit the shops and park in Blowing Rock, the old-fashioned candy shop at Mast General Store in Valle Crucis, and eat a meal at the Daniel Boone Inn. All really simple stuff – but it sounds good to us. Thanks to our neighbors and family who are looking after our place while were gone.

Both Grace and Laura have been doing well. Laura has had a sudden burst of mobility! She’s crawling with a vengeance, pulling up independently, and cruising along chairs and sofas. If she continues at this rate, she will beat her sister to her first step (Grace took her first independent step at her one-year doctor’s visit). Grace has started using a new phrase frequently - “shoo fly.” It’s most frequently used on Dad whenever Grace would be much happier with Mom. For instance, when Grace takes a fall and is crying for her mom, if Dad appears he gets a quick and dramatic “shoo fly” accompanied by the appropriate hand and arm motions. “Shoo fly” may also be directed at inanimate objects, such as a tricycle that Grace has just fallen from. We’ve laughed at her so frequently that Grace is starting to find the humor as well. Now she starts out with one of her “shoo fly” productions and ends and by laughing at herself.

Grace and Laura continue to be inseparable. Grace makes a beeline to the nursery whenever Laura makes her first peep over the monitor during naptime. She just can’t wait for her to wake up and play. I wonder if they’ll continue to be so “in love” as they approach adolescence…….

Thanks for checking in……….

Monday, March 12, 2001 at 05:09 PM (EST)

Good afternoon –

We had a great weekend! On Saturday we went to Mawmaw and Pawpaw’s to celebrate Mama Ruth and Dad’s birthdays. We had a very nice lunch and the girls really enjoyed playing with their cousins Benjamin and Hannah. Grace played so hard that she nearly fell over from exhaustion! Even so she didn’t want to go home. We had to get a CBC on Sunday morning. Dad dropped it of by the hospital and came home to hear the results. Grace’s WBC and hemoglobin were fine, but her platelets were quite low. She was on the threshold for transfusion, but we were able to put it off for one more day. Dr. McLean even okayed a trip to Dan Nickolas Park if we promised to take it easy. We don’t need counts again until Tuesday morning unless Grace shows symptoms of very low platelet count (bleeding, continued excessive bruising, etc.). We had a fantastic time at the park. The weather was beautiful. Grace loved the carousel and train ride. We enjoyed both REPEATEDLY. One more trip on the carousel and Dad would have needed to borrow some Zofran! There was also a duck pond, playground, and a mini-zoo.

All the other parents with small kids at the park looked so young. Mom and Dad decided that either there are a lot of teenagers with small children or this experience has aged us more than we realize! It was very nice to get out in the world like “real people”.

We’re looking forward to another calm week. Grace is scheduled to go in for chemo on Thursday. Unless her platelet count has made an amazing recovery we will probably delay chemo until at least next Monday. If that’s the case we may try to plan a weekend out of town! We’ll see…….

Thanks for checking in!

Friday, March 09, 2001 at 04:31 PM (EST)

Good afternoon –

We’ve had a good couple of days. Yesterday, Mom, Laura and Grace went to visit the horses at Tanglewood and to the church playground. Today, Mom took Grace and Laura to Twin Lakes Airport (a small private airstrip near our home) to take a look at the planes. They got to see one land and travel within an arm’s length of them. The girls were thrilled. We drew blood this morning and Dad dropped it by Brenner’s. Grace’s platelet count was low, but good enough to avoid a transfusion. We have to check counts again on Sunday. Unfortunately, she will have to continue Neupogen injections until at least Sunday to prevent dropping her platelet count. Her hemoglobin and WBC looked great so we should be on for our weekend plans. We’re going to a birthday party for Dad and Mama Ruth on Saturday. We hope to go to Dan Nicholas State Park on Sunday. They have a mini-zoo, a carousel, and real train rides! Pray for good weather and sparse crowds (although these normally don’t go together)!

Dad spoke to Dr. Tim Driscol at Duke today. We got more good news. First, he feels that the number of stem cells that we have harvested is adequate for now. We won’t harvest any more cells until after all of Grace’s chemotherapy is complete. He left the door open for one more attempt prior to transplant. Secondly, we finally got the HLA typing back. Grace and Laura are a match!!! Since Grace has banked her own stem cells, Laura will probably never need to be a donor (thank God), but it is a great back up plan.

Please continue to be in prayer for the Powell’s as they prepare to return to WV on Wednesday.

Thanks for checking in with us today. Have a great weekend.

Wednesday, March 07, 2001 at 03:41 PM (EST)

Good afternoon –

Things have been going well for us around the Cain house. We drew labs yesterday and took them by Brenner’s. Grace’s hemoglobin was fine. Her white count and platelets were very low. Mom took Grace and Laura to Brenner’s around 11 for a platelet transfusion. Since the viable platelet count in this transfusion was low, they had to transfuse more volume – meaning the transfusion took longer. Otherwise things went smoothly. Grace’s nausea and mouth sores seem to be tapering off and certainly haven’t kept her from eating. Maybe they will be completely gone in the next few days. We get another CBC and diff on Friday. Please pray that Grace’s counts will look better so we can avoid more transfusions and so we can attend a combination birthday party for Dad and Mama Ruth (Grace’s great-grandmother) this weekend.

I would also ask that you keep the kids being treated on the BMT unit at Duke in your prayers. There have been seven deaths in the past couple of weeks and another little girl is very close to death as well. Please pray for these families and the BMT staff as well. It must be very encouraging to work in a place that gives hope to so many children that otherwise wouldn’t have a chance. On the other hand, I can’t imagine seeing so many beautiful children lost to a host of ugly childhood diseases. I would pray that they would continue to have strength to work along side the Great Physician in healing these otherwise helpless children.

Thanks for checking in.

Monday, March 05, 2001 at 03:43 PM (EST)

Hi –

I hope that each of you had a good weekend, albeit a rather soggy one around here. We had a pretty smooth weekend. We spent much of the weekend doing fun things like grocery shopping and organizing the garage. We’re starting to realize that our move to Durham will be here before we know it, so we need to start getting prepared.

A very kind furniture storeowner gave us a club chair and ottoman so Grace would have a comfortable place to lounge if she wasn’t feeling well. His father battled cancer for a long time and often enjoyed relaxing in front of the TV. We reorganized our den to accommodate Grace’s new chair and in the process got rid of another chair, ottoman and loveseat. The new arrangement is much better for the girls because it gives them much more room to play in the floor. Grace also gets a larger “dance floor.” The only problem now is the sofa looks so old and ratty!

Grace continues to have bouts of nausea. The chemo drugs that she received this last round affect her for quite a long time. Fortunately, we have a drug, Zofran, which may be given at home to prevent nausea. She’s also starting to have mouth sores. So far they haven’t affected her appetite greatly, but it is an indication that her WBC has lowered. We had hoped to get her out into the real world this week, but we’ll have to see how her counts come back tomorrow. Otherwise she’s feeling remarkably well. She continues to grow taller and heavier. It’s amazing how resilient her body has been through this therapy.

We have anther funny story, this time from Friday’s platelet transfusion. When Grace was about half way through her transfusion she started coughing and gagging, a sure sign of bad things to come. The nurse quickly grabbed a large basin. Not only do these come in handy for catching vomit, but they also make a great baby doll bathtub! Once the basin was in front of her, Grace suddenly calmed down and seemed fine. Mom asked Grace if she was okay. Grace said, “Oh, I’m fine, I just wanted another baby doll bathtub.” The girl has sprit! She’ll make a fine actress someday.

Thanks for stopping in. Have a great day.

Friday, March 02, 2001 at 04:13 PM (EST)

Good afternoon –

PRAISE THE LORD, the “girl blanket” (it’s covered with precious moments girls) has been found!

Grace had a very good couple of days, but she’s definitely been missing her blankie. She usually counts on it at bedtime and after getting an injection. Last night she cried herself to sleep because “all she wanted was her girl blanket.” This morning we had to draw labs and drop them off by the hospital. Dad stopped by the laundry while he was there. It is HUGE. It takes up the entire sub-basement of the Reynolds Tower and is filled with thousands of sheets, towels, washcloths, pillowcases, scrubs, and lab coats. I located the supervisor and he was able to locate her blanket somehow. Dad nearly kissed the man. He couldn’t have been happier if someone had given him the keys to a new car. Grace will be thrilled to have her “girl blanket” tonight. Thank God for answering even the smallest of prayers.

Grace’s WBC and hemoglobin weren’t too bad today. Her platelets were low enough to require a transfusion. Mom, Grace and Laura went to Brenner’s this afternoon for the platelet transfusion. It went smoothly. We anticipate Grace’s counts to be at their lowest this weekend so we plan to “hunker down” at home. We will rest and get our house in order.

We would like to thank everyone at Tyco Electronics. The people at Tyco have been so kind and generous during this experience. They again showed the depth of their kindness and generosity today by sponsoring a luncheon benefit for Grace. We’re so glad that God led Dad to this workplace.

Please keep the Powell’s in your prayers. They are in the unenviable position of choosing to participate in additional treatment. They have made the decision to participate in a Phase II clinical trial using Monoclonal Antibodies at Memorial Sloan Kettering in NYC. They could potentially be in New York in less than a month. Pray that they will feel comfortable with this decision, that the logistics will come together smoothly, and that their insurance will approve the treatment with little convincing. This is a great opportunity for kids like Jon to get in on the “ground floor” of cancer immunotherapy. The designers of this trial anticipate that this therapy will greatly reduce the chances of recurrence. Praise God for the continual improvement in cancer treatments. Clinical trials completed just a few years ago have given kids like Jon and Grace a real chance at beating this monster.

As always, thanks for your prayers and support!

Wednesday, February 28, 2001 at 04:37 PM (EST)

Good afternoon –

Things are going well this week. Fortunately, we have very little to report. On Monday night, Grace’s counts were in top condition, so she got to visit with Brandon and Emily, two of her friends from church. On Tuesday morning Nana came over for a visit. That evening Mom, Dad, and the girls went to the grocery store together. It was a very normal family outing! Mom decided that this was the calmest week we’ve had in a long time, so she stocked up on “real food.” Today she and Grace are making a ham, green beans, corn on the cob, deviled eggs, bread, and a banana pudding. The kitchen will be a disaster, but dinner will be great! Mawmaw and Pawpaw are coming over to enjoy it with us.

Tomorrow should be another easy day. On Friday we have to draw labs for a CBC. Hopefully Grace will not need a platelet transfusion. Based on her rosy glow, a red blood transfusion seems very unlikely. Tyco Electronics (Dad’s workplace) is having a hotdog luncheon for Grace on Friday as well. We wish that Grace could be in attendance, but that will be day 9 of her cycle – typically one of her lowest. I guess a collage of photos will have to suffice.

Dad misplaced Grace’s favorite blanket Monday while being discharged from the hospital. We haven’t been able to locate her “girl blanket.” It seems silly, but pray that we will find it, find a suitable replacement, or that Grace will transfer her affections to a new blanket! At least we still have Bun Bun…….

Have a good day. Thanks for checking in.

Monday, February 26, 2001 at 05:19 PM (EST)

Good afternoon –

Grace is home and loving it!

Grace completed her chemotherapy and hydration during the night and was discharged this morning. When she was disconnected from the IV hydration Grace hopped of the bed and said, “Okay – let’s go home.” She was home by 9:30 this morning. By 10:30 Mom, Laura and Grace were on their way to Tanglewood. They stopped by Burger King and Arby’s for a “picnic” lunch at the park. Grace got to check up on all the horses that are boarded at Tanglewood. Buddy’s hoof is doing much better! She also visited with dogs, a cat climbing a ladder, and even a mouse in the stables. After leaving Tanglewood, the girls went to Macedonia’s playground. Grace immediately ran to the biggest slide and soaked herself with left over rainwater while going down it. Mom and Laura hadn’t even made it out of the van! The girls didn’t make it home until nearly 3:00. Today has been so much better than discharge day used to be. Grace seems to be growing stronger even during her treatment.

Unless we run into problems, this week should be pretty uneventful. Our only medical care required, other than normal stuff like Neupogen injections and central line care, is a blood count on Friday.

Have a good evening……..

Saturday, February 24, 2001 at 02:52 PM (CST)

Round 6 continues... Grace is doing very well with this round. She was able to eat a little yesterday, although she has struggled with nausea off and on. She has had some vomiting but it hasn't been overly upsetting for her. We are so thankful for the researchers that developed all of the wonderful anti-nausea drugs that keep things under control for her. Grace also seems to be enjoying sharing a room this time. She and Amber have played well together and it seems to be a nice distraction for both of them. Grace so seldom gets to play with other children and it thrills us to see that she has retained some social skills!! Amber is in Kindergarten and Grace thinks that she is so cool and grown -up! Please say a special prayer for rich blessings and strength for Amber and her family. Amber relapsed in the fall after completing her initial treatment in the spring of 2000. She is facing chemo every 21 days until the summer of 2002. She has an older sister who is in the care of relatives while their Mom stays with Amber. Amber's father died from cancer shortly before Amber was diagnosed. Teresa, Amber's mom is trying to care for both girls and manage frequent hospital stays. In addition, she has been laid off from her job for a month, although she will be returning this week. Please pray for healing for Amber, patience and peace for her sister, Crystal (it is so hard to be the child left at home without Mom), and strength beyond belief for this extraordinary parent. I cannot imagine what it must take for this woman to go on each day . It is all that our two parent family can do to manage each day and we don't have to worry about school issues etc. She is an amazing person and I feel so blessed to have met her.

We got WONDERFUL NEWS yesterday!!!! Grace's stem cell harvest was CANCER-FREE!!!!!!!!!!!
Now we know for sure (not that anything is ever certain in this game) that Grace will have an autologous transplant! It won't be easy, but it is definately the best option! Also MORE GOOD NEWS!!!!!!! One of the chemo drugs that Grace is on has the potential to cause life long damage to her heart. While she will have to be monitored the rest of her life for this, at this time her heart function test (echocardiogram) yesterday indicated no change since her baseline in October!!!!She will continue to get more of this drug but not a huge amount. We were very relieved to say the least. Grace is showing some signs of having other various life long side effects. Please pray that the effects will be minimal and not progress any further. (We have made the decision to not list the specific side effects that are surfacing because we don't want to violate Grace's privacy. We just don't want her to be sixteen years old and be upset that everyone knows everything about her. We so appreciate your understanding and your prayers. Some of these things are very hard for us to face.)

We also wanted to say a special thank you to all of you who have ministered to us with meals while we have been in-patient, in clinic all day, and returning from Duke each evening. You will never know how helpful you have been. While we love to keep things normal for the girls when Grace is well, it is impossible to maintain cooking when she is sick. In a period of our lives where we are constantly worried, getting minimal sleep, living out of suitcases, and getting no exercise, we have to stay healthy to take care of each other. I am convinced that the healthy meals that we have been served are helping us win that particular battle. We so appreciate the time, skill, and love that it takes!

As always, thanks for checking in and for your prayers!

Friday, February 23, 2001 at 12:40 AM (EST)

Good afternoon –

I guess we’re past due for an update. Things have been going well. Wednesday was just about as normal as it gets around our house these days. On Thursday morning we were greeted with the lovely site of some big, fluffy snowflakes! Mom and Dad drew blood from Grace for lab work. Then we told her about the snow. She was so excited!!! Mom, Grace and Laura pulled out all the snow gear while Dad drove the sample over to Brenner’s. When Dad got home everyone was ready to pile outside for a little sledding! Of course we had to keep the cordless phone with us to get the game plan when the clinic called back with Grace’s counts. Grace and Laura both had a really big time. Laura just enjoyed looking around. Grace enjoyed riding on the sled that Santa brought her. Dad pulled it around and around and around the front yard with Grace yelling “faster” the whole time. It was one of those rare truly normal times (with the exception of Dad being home on a Thursday morning). We got the call from the clinic telling us that Grace’s counts looked great and that we could bring her directly to the floor to be admitted. We miss the staff in clinic, but this home blood draw stuff is great! Let’s see -sledding at home vs. sitting in a hallway waiting on counts – NO COMPAIRISON!!!!!!! I think this method actually gets us admitted faster.

The admission went smoothly yesterday. Again, the 6th floor is packed out so we had to be admitted to a semi-private room. Fortunately, we were placed with a really nice little boy, Wesley who Grace had met in clinic. I think Grace enjoyed having some company. I’m not sure how much Wesley enjoyed hearing Grace scream her lungs out during the night while she was vomiting, but that’s another story! Wesley is going home today, but we’ll now be sharing our room with a nice little girl, Amber who’s also coming in for chemo. We’ve shared with them before, so I’m sure it will go fine. I don’t know how people functioned years ago in huge open wards.

Laura and Grace are really starting to miss each other when they’re separated. Mawmaw and Pawpaw are keeping Laura today, but they’ll bring her by the hospital tonight for a visit. This morning Laura was looking all over the house for Grace. She kept turning her head and saying “Baa Baa.” That’s Laura’s word for Grace (we’re not quite sure were that one came from). It has continued to surprise us how close they are and how much they truly love each other. We worry about the amount of time they will have to spend away from each other during transplant. Laura will be allowed on the unit if she is healthy and if Grace is up for a visit.

We will be inpatient until Monday morning (hopefully). Thanks for the continued prayers and notes of encouragement. Have a great weekend.

P.S. I must give an update on the “cookie story.” Pat sent another HUGE bag of snickerdoodles Wednesday. Grace has enjoyed them greatly. Mom and Dad have snatched a couple of cookies as well!

Tuesday, February 20, 2001 at 04:36 PM (EST)

Good afternoon –

Well…..it’s time for another bend in the road. No bad news though!

Mom and Dad successfully completed our first solo blood draw this morning. It went well, although we did wake Grace up because we were a little cumbersome! Of course Laura was doing her best to help out big sister. She spent the whole time grabbing and snatching at all of the medical supplies. She thought it would be great to drink saline and eat alcohol pads. After reviewing Grace’s wildly fluctuating blood counts over the past few days, the docs thought it would be best to hold off on Chemo for a couple of days. The combination of the pheresis and the never-ending Neupogen injections have left us wondering were the blood count “wheel” will stop spinning. We’re going to draw a CBC again on Thursday morning and see how her counts look. Grace will most likely be admitted later on Thursday to start her Chemo.

We heard back from yesterday’s harvest. It was nearly twice as good as Friday’s. In total we have enough cells for two complete transplants. We think that were through with pheresis and harvesting! We’re going to check with Dr. Driscoll over the next couple of weeks to be sure.

Dad’s in trouble again. After arriving at work today, he found a package of homemade cookies on his desk. After eating all but one of them Dad discovered that they were baked by his boss’s wife and were intended for GRACE. At least Grace will get one……….

Please continue to remember Jon Powell. He’s doing very well, but I’m sure that he and his family are anxious to move back to WV. Please pray that everything will continue to progress smoothly for Jon.

Thanks for checking in. Have a good day.

PS We forgot to mention that Mom, Grace, and Nana had a little bump up on the way to Durham yesterday. Another car ran into them at the bottom of an exit ramp. It was so minor they weren’t even sure if they had been hit or not. No one was injured. We don’t think that there was any damage to the van. Dad was so scattered that he didn’t even look at the bumper last night! Temporal things are so far down the priority list right now!

Monday, February 19, 2001 at 02:06 PM (EST)

Hey y’all –

We have good news. The harvest from Wednesday was very successful. It had enough cells for a single transplant!!!!! We will not hear from the BIS lab until later this week, but Dr. Driscoll said he would be “flabbergasted” if it showed any Neuroblastoma cells. Historically, the second day of pheresis yields the most cells, but Friday’s harvest only had enough cells for about 1/3 of a transplant. We’re looking to get at total of 2 transplants and a backup (or 3 transplants). Hopefully, after today we’ll be through with the pheresis process. Regardless, we’re thrilled that we have enough for more than one transplant at this point.

Things went smoothly on Friday. Nana went along so Mom and Dad could meet with Dr. Driscoll. That meeting went very well. He seemed very pleased with Grace’s progress. We reviewed the BMT process and aftercare concerns. We also found out that Grace will most likely only need focalized radiation and can avoid TBI (total body irradiation). This is a great relief. We even stopped on the way home to do a little shopping for the girls. Mom’s sick of their functional hospital clothes and was ready to get some nice spring dresses (that of course match/coordinate).

Saturday we had Grace and Laura’s picture taken at Olan Mills. Before we brought Grace into the studio, Dad went in to scope things out. The place was completely empty with the exception of the photographer. He seemed to be coughing though. Dad interrogated him completely. After “passing muster”, Dad informed him that he was not to touch or come near the girls. Dad said, “Just give us instructions and we will position them.” We have become so completely self-absorbed and obnoxious through this experience. I wouldn’t want to have to deal with us!!!!!!! After the pictures, which went great, we shopped for Nana’s birthday present. We went to Nana’s for her birthday party that evening. It was great. Grace had a great time playing with Uncle Wendell, Aunt Tammy, Nana, Gams, and especially her cousin Jacob.

On Sunday we prepared for today’s trip to Duke and for spending the rest of the week at Brenner’s. We also got to visit one of Dad’s co-workers Cathie. She has miniature horses and rabbits. Grace and Laura had a great time. We’ll be sure to post the photos when they come back.

As it stands now we will continue with chemotherapy at Brenner’s. Grace has three more rounds of chemo, the next of which will start tomorrow. These rounds of chemo should be complete around the first week of April. Once she has recovered from the final round of chemo we will repeat all of the diagnostic tests. These tests (blood, urine, CT scan, bone scan, MIBG, skeletal survey, bone marrow aspiration and others) will take several days and will most likely be done at Duke. At that point we’re praying to be labeled CR (complete remission). Following testing we’ll have two treatments at Duke: 1. Focalized radiation – this will take place over a two week period with radiation administered a couple of times each day and 2. High dose chemotherapy with stem cell rescue – this is the BMT and will require approximately 4 weeks of inpatient care. Following the BMT Grace will require daily follow up on an outpatient basis. We will need to remain in Durham for several additional weeks. All of these times are very approximate. The order of the BMT and radiation could flip-flop and the times could be much more extended if we run into complications.

Funny story: First a little background. The BMT unit, where pheresis is performed, has special entrance requirements. You can’t enter the unit if you have fever, cold, etc. Before entering the unit you go into a transition area with double doors. The doors to the hall and to the unit may not be opened at the same time. You are required to place shoe covers on your feet and wash your hands thoroughly. With that being said - Mom bought Grace and Laura Easter dresses on Friday. They may never get to wear them, but we’re thinking positively! Grace put on a “fashion show” Friday night. When she was modeling her Easter dress, Grace said she looked like Cinderella. She really did look beautiful. She suddenly ran from the room and told us that she had forgotten something. She returned with a handful of shoe covers from the BMT unit and told us that she had forgotten her “slippers”. Maybe this is one of those “had to be there” experiences, but I thought we would never stop laughing.

Have a good day. As always – thanks for the prayers and support.

Thursday, February 15, 2001 at 04:20 PM (EST)

Good afternoon –

We’ve had a good couple of days cruising up and down I-40. Mom and Dad took Grace to Duke yesterday for her first round of pheresis. It went reasonably smoothly. At first the saline flush (or something) made Grace nauseous. We fought that for about 20 minutes although fortunately she never actually got sick. Then a few minutes later we realized that Grace wiggling around with the nausea had pulled the calcium drip loose. Pheresis can cause a temporary drop in your blood calcium levels. This can cause tingling in the fingers and toes. Grace did complain that her hands felt funny. Once we got the calcium drip replaced everything went smoothly. Grace went to sleep (assisted by the Benadryl and Tylenol) and slept through most of the procedure. We got home around 5:00.

Mom, Laura, and Grace are enjoying a “down day” before heading to Duke again tomorrow for pheresis. We’ll get started pretty early, so maybe we’ll beat the worst of the Greensboro traffic on the way home. We’re supposed to meet with Dr. Tim Driscoll tomorrow so NaNa is coming to help watch Grace. We’re also hoping to see the Powell’s (Tim, Melissa, and Jon).

We should have a better idea tomorrow what type of cell count we’re getting each day. We’ll hear next week if the harvest is clean of Neuroblasoma cells. We certainly expect it to be!

The pheresis procedure is performed on the BMT unit. It seemed very subdued yesterday. We’ve since found out that 2 of the 16 patients were in their last few hours of life. Please pray for these children’s families. They are now dealing with one of life’s most difficult imaginable challenges.

PS Check out the new photos.

Tuesday, February 13, 2001 at 02:50 PM (EST)

Good afternoon –

I guess we’re past due for an update. Our weekend went smoothly. We mostly just chilled out and tried to get ready for our busy week ahead. Yesterday we needed counts to determine if Grace would need a red blood transfusion. The folks at Duke want her hemoglobin to be “normal” prior to pheresis. Home health came out to our house to train Mom on doing our own blood draws. Grace’s counts were great, but her hemoglobin was just low enough to warrant a transfusion in preparation for Wednesday’s pheresis. The home health nurse improperly labeled the type and cross so it had to be repeated at Baptist. The transfusion that should have been complete by 8:00 PM ended up lasting until 10:30 PM. That meant that Grace didn’t get into bed until after 11:00. Oh well…….the best laid plans. The good news is that we should be able to start doing our own draws now. That’s one more thing in our control. We’ve learned through this experience that we’re definitely control freaks when it comes to our girls!!!

Today Mom and NaNa took Grace down to Duke while PawPaw and MawMaw kept Laura at home. We’re so thankful for our extensive support system. I’m not sure how families without this type of support get by. Duke repeated a battery of labs today and did a basic physical. Everything went smoothly. Everyone should be home in the early afternoon.

We got the results back from the bone marrow typing on Mom, Dad, and Laura. Unfortunately, the result from Grace’s test was inconclusive due to her low counts at the time of the blood draw. The only thing that we’ve found out so far is that Laura does conclusively belong to Mom and Dad. I guess when we get to Laura’s teenage years we can’t claim that there was a mix up at the hospital! The docs at Duke will decide before tomorrow if we want to repeat Grace’s test. They may be a little hesitant since the stem cell harvest looks so promising right now. That’s fine. We’re moving towards an autologous transplant full steam.

We’re still on schedule to harvest tomorrow, Friday, and Monday. We will then be admitted to Brenner’s next Tuesday through Saturday for chemo.

Please pray that each visit will continue to go as smoothly as today’s.

Happy Valentine’s Day!

Friday, February 09, 2001 at 04:56 PM (EST)

Good afternoon –

Yesterday was a red-letter day! Grace got her clean BIS lab results, Jon Powell was discharged from the BMT unit and returned to the “vacation house”, and our good friends David and Sandy Hendrix had a healthy boy at FMH.

Grace and Laura had a very nice day today. Mom took them to the park today to see the horses and picnic by the duck pond. They avoided the playground because it seemed very crowded. We’re determined to avoid any illness prior to next week’s stem cell harvest!!! They went to the playground at our church instead. Everyone had a good time getting out in the unseasonably warm weather. We’re still working out some plans for the weekend that will get us all out of the house without coming in contact with anyone. Doesn’t that sound bizarre? I think we will lighten up a little bit once this harvest it behind us!

Our schedule has changed slightly. Dr. Driscoll at Duke wanted Grace to “rest” a few days from Neupogen injections prior to harvest. We discontinued her injections yesterday and will re-start them Sunday night. On Monday, home health will draw labs at our house. Depending Grace’s counts, she will probably get a red blood transfusion on Monday afternoon/evening. On Tuesday, we will go to the outpatient clinic at Duke for extensive lab work and a physical. Wednesday, Friday, and the following Monday we will travel to Duke for pheresis. On one of those visits (probably Friday) we’ll try yet again to meet with Dr. Driscoll. If everything remains on schedule, we will start round 6 of chemo on Tuesday, February 20th. After this round we should only have two more prior to transplant!

Thanks for your continued support and prayers. Praise God that Jon Powell moved back to the “vacation house” yesterday. Pray that his transition to outpatient care will be smooth and that they will return to West Virginia very soon.

Thursday, February 08, 2001 at 04:56 PM (EST)

Good afternoon –

Praise the Lord! We have great test results. The BIS lab results came back clean today……Grace’s bone marrow shows absolutely no evidence of disease! We are on cloud nine! Right now we are scurrying around trying to put together last minute plans for pheresis next week. Duke has tentatively scheduled harvests for Monday, Wednesday, and Friday of next week. Before we start pheresis Duke needs to do more blood work and a basic physical. That will be scheduled for tomorrow or Sunday. Following the harvest, Grace will start round 6 of Chemo at Brenner’s.

Based on the information that we have been given, there is still a tiny chance that the peripheral blood could have Neuroblastoma cells that would taint next week’s harvest. The harvest will again be sent to the BIS lab to confirm that it is clear. We are trusting that God will again bless us by providing an adequate and clean harvest.

Our thanks go out to so many of you that have lifted Grace and this testing up in prayer. We cannot tell you what a difference it has made. We will continue to trust God to carry us through this challenge!

Thanks for checking in today!

Wednesday, February 07, 2001 at 04:05 PM (CST)

Hey everyone –

Grace is feeling much better. Aunt Teresa came by yesterday for a visit. Grace really enjoyed seeing someone other than Mom and Dad. She has been very active today and has a good appetite. She and Laura have played well together. Laura is trying her best to crawl. We expect success any day now. Grace has spent the afternoon making valentines for her family. She asked Mom to write “Dear Jonathan Cain” on the front of Dad’s valentine! This afternoon the girls are going to Reichel’s Bread Basket in Advance to buy special valentine sprinkles.

Grace has decided to turn around our pop psychology and use it on Mom and Dad. We try very hard to give her choices so she feels that she has some control. As an example, “Do you want to change your dressing first or take your shot first?” or “would you like your transfusion in the pink line or the blue line?” Today Grace tried this approach out on Mom. Mom needed to change Grace’s diaper. She asked her to get down from the white chair so she could change it. Grace said, “I’m giving you a choice (this is right out of our mouths), you can change it in the white chair or not change it at all.” She was very good-natured about it, she just wanted to give Mom a choice. How can you argue with this logic? The kid is too smart for her own good!

We found out this morning that the lab at Duke is very backed up, so we will not hear from the bone marrow typing for Mom, Dad, and Laura until the middle of next week. We’re still hoping to hear from the BIS lab by Friday.

Thanks for checking in!

Tuesday, February 06, 2001 at 04:28 PM (EST)

Good afternoon –

Grace was very glad to be home yesterday afternoon. She enjoyed watching Cinderella and playing with Barbie. She got another great surprise after her dressing change last night. It was a really cool grocery store shape sorter. At the rate she’s going we’re quickly burning up the stockpile! The way we look at it she deserves every indulgence. We enjoy watching her play and finding joy in “normal” toddler stuff.

Grace slept well last night, but Laura “visited” Mom and Dad (mostly Mom) several times last night. She’s working on two more front teeth and they seem to be bothering her. Not to be outdone, Grace is working on a molar as well.

Grace has been a little slow today. It seems to be coming from a combination of small things. She’s a little sore from the bone marrow biopsy yesterday. She has also been having nausea that seems to be coming from a lingering runny nose. She does seem to be feeling some better this afternoon.

Grace called Dad this afternoon to make her grocery store order. She wants blueberries for blueberry pancakes (one of Dad’s few specialties). Let’s hope that she will eat them once there made.

Please continue to keep the outstanding test results in your prayers. We’re currently waiting for bone marrow typing from Mom, Dad and Grace. We are also waiting for the BIS lab results from yesterday’s bone marrow aspirate.

Thanks for checking in.

Monday, February 05, 2001 at 02:09 PM (EST)

Good afternoon –

We had an uneventful weekend. Unfortunately, Grace’s counts didn’t go anywhere fast. Mom, Dad, Grace and Laura pretty much spent the weekend staring at each other in our 8’ x 10’ room. It was one of those times that Grace was much too well to be in the hospital, but not well enough to go home. We got a four-hour pass to leave on Sunday. That was a much-needed break. We went to MawMaw and PawPaw’s house for lunch. Grace had a great time playing in the yard and eating MawMaw’s home cooked meal. I’m not sure who dreaded going back to the hospital more, Grace or Mom and Dad. By Sunday, Grace’s mouth sores were much better.

This morning Grace’s counts looked much better. Her WBC was 1.5, hemoglobin 9.3, and platelets 53. These counts were even high enough to do the bone marrow aspiration. We were able to get Grace home by lunchtime today.

Grace has taken to flushing her own lines. She takes the syringe and depresses the plunger to inject drugs into her central line or port-a-cath. This is fine since a flush doesn’t require careful measurement or controlled infusion. Today, Grace had to be sedated to have the bone marrow extracted from her hip. She saw no reason that she shouldn’t “help” the anesthesiologist infuse the anesthesia drugs directly into her line. Dr. Tobin played along and let her “help” him. This is one time we really needed the video camera – Grace administering her own anesthesia! Dr. Tobin is so good-natured!

The docs are putting a rush on the bone marrow testing, so we could hear something as soon as Friday. Please pray for a good result!

Have a good day. Thanks for checking in.

Friday, February 02, 2001 at 1:35 PM (EST)

Good afternoon –

Yesterday, Mom got the chance to visit with two of our church staff members (Pastor Greg and Janie) while Grace slept. Laura also came by in the afternoon, at Grace’s request, and stayed until Mom went home. The girls went to sleep early last night so Mom and Dad got to watch the second half of Survivor “together” via the telephone. Grace slept well last night and had no fever this morning.

Grace continues to have mouth sores that are preventing her from eating. She has been drinking some milk. Her counts are still in the gutter today. Her hemoglobin is fine at 10, her WBC is .2 and her platelets are 14. She will get another platelet transfusion today. The last one didn’t seem to “take” for some reason. Although her fever is gone, Grace will remain in the hospital on IV antibiotics until her counts start to recover. Sunday is our best guess at a discharge date.

Some of you have asked about our schedule. It’s very tentative at this time. The first step is getting Grace’s counts to recover. At that time (the middle of next week?) we will repeat a bone marrow aspiration, taking a bone marrow sample from her hip. That sample will be sent to California for testing. The results will take about a week. If the test shows any Neuroblastoma activity we will immediately start round 6 of chemo. If the sample is clean (please pray that it will be) we will then go to Duke to repeat pre-pheresis testing and move forward with pheresis (stem cell harvest). In this case, round 6 will immediately follow pheresis. Everything hinges on the results from the BIS lab.

Thanks for checking in. Have a good day…………

PS We added new pictures a few days ago.

Thursday, February 01, 2001 at 1:50 PM (EST)

Good afternoon –

We’ve come to expect the unexpected these days…… Grace felt fine all day yesterday. She had some appetite and played with Laura much of the day. Late yesterday afternoon, Mom thought that Grace felt a little warm. She did have a very low-grade fever. Later in the evening her temperature exceeded the threshold for administering IV antibiotics. Now that Grace has a central line that threshold is only 100 degrees. We called in and sure enough Dr. Johnson asked us to admit Grace. The admission went very smoothly. Grace had been assigned a room, examined, had the labs drawn, and IV meds started before midnight. Her tests were negative for both RSV and influenza. The CBC indicated a reasonably good hemoglobin but her WBC was very low (.2) as well as her platelets (10). She received a platelet transfusion during the night.

Grace slept well last night. She woke up feeling well, although her fever has gone up to 101.5. She’s had a good day, napping on and off throughout the day. She has gotten sick twice and the second time BunBun got caught in the line-of-fire. Thank goodness that Sparky the firedog with the W-S fire department had been by and left a teddy bear. He’s standing in while BunBun runs through the laundry (the hospital provides a washer and dryer on the 6th floor for use by families). The resident was able to identify an ear infection today. It will be great if that is the extent of Grace’s infection. It should clear reasonably quickly. Evidently Grace didn’t want Laura to get away with anything that she hadn’t done!

Please pray that the fever will pass quickly and that we will be home soon.

Thanks for checking in………

Wednesday, January 31, 2001 at 04:16 PM (EST)

Good afternoon –

Grace continues to feel well considering she should be at her lowest counts over the next few days. She still has an appetite and is reasonably active. We’re holding on for the next few days hoping that we can avoid fever, infection, and mouth sores.

Check out the “new” pictures. They’re leftovers from before Christmas.

Thanks for checking in………

Tuesday, January 30, 2001 at 04:45 PM (EST)

Good afternoon –

Grace and Laura are doing well. We forgot to mention in yesterday’s update that Laura went to the pediatrician on Friday with an ear infection resulting from the RSV leftovers. It was caught very early and she’s done fine with the exception of the antibiotic upsetting her stomach.

We got back counts on Grace late yesterday. Her hemoglobin looked great, her platelets were fair (she may need a transfusion later in the week), and her white count was horrible (.4). She’s feeling amazingly well considering her counts. She’s had a good appetite and so far we’ve avoided mouth sores.

Thanks so much to everyone who has sent gifts to Grace, particularly the new “stockpile” from Cooleemee School. It has been great for us to put back some of these items to use as “surprises” after Neupogen injections and dressing changes. I don’t guess they can be considered surprises anymore since Grace has grown to expect a little something after every painful procedure!

Please pray that Grace will continue to feel well despite what her blood counts reveal. Also, keep in mind a Friday meeting that Mom and Dad have planned with Dr. Tim Driscoll at Duke. He’s their Neuroblastoma guru. Our list of questions continues to grow. This meeting may be cancelled depending on Grace’s condition on Friday.

Thanks for checking in……….

Monday, January 29, 2001 at 02:13 PM (EST)

Good afternoon –

We got another bit of discouraging news on Friday. We heard the test results from Grace’s stem cell harvest. It was definitely corrupted with Neurblastoma cells. Although we weren’t planning to use this harvest because of the possibility of transmitting RSV at transplant, we had still hoped that it would be clean. We now know that the Neuroblastoma cells that were previously detected in the bone marrow aspiration have spilled over the Grace’s peripheral blood. There is still some hope of retrieving a clean stem cell harvest, but we are getting the ball rolling on bone marrow typing by drawing labs for Grace, Laura, Mom and Dad today. We should have the results in about a week.

Grace’s counts are starting to drop from the Chemo that she received last week. We will repeat the bone marrow aspiration once her counts have bottomed out and returned to normal. We will then wait to see if it is completely clean. If the result is clean, we will move forward with the stem cell harvest. If not, we will start Chemo and repeat the whole process. It’s very important that we clean Grace’s bone marrow. Not only for the possibility of stem cell harvest, but also so she can be in remission at transplant. Her odds are much better if she goes into transplant in remission. Please pray for a clean bone marrow aspiration!

Grace and Laura felt well this weekend. We went to the playground at Tanglewood on Saturday. We followed up with dinner and ice cream at the Village Soda Shop. Grace had such a good time on Saturday that we went back to the playground on Sunday. We attempted to go back to the soda shop but it was closing at 5:00 due to the Super Bowl. Grace fell to pieces because she couldn’t get her superhero ice cream (vanilla that’s colored bright red, yellow and blue). This was our first sign that Grace’s counts were dropping. She tends to lose her reasoning skills as her counts drop. Of course Dad found himself knocking on the door of the soda shop and trying to explain. Thank God these people showed mercy and gave us a complementary cup of super hero ice cream. The next time you’re in Clemmons please have lunch or dinner at the Village Soda Shop at Tanglewood Commons (Harris Teeter).

Thanks for checking in……..

Thursday, January 25, 2001 at 02:01 PM (EST)

Very quick update –

Grace is doing very well. So far she’s tolerated the Chemo great. She should get discharged at about 3:00 today.

We’re trying something new next week. We’re going to be trained to do our own blood draws off of the central line at home and dropping the vials by Brenner’s. By doing so we will avoid clinic visits unless Grace needs transfusions or has some other problems. Yea!!!!!!!

Thanks for checking in. Keep Grace and her friend Jon in your prayers.

Wednesday, January 24, 2001 at 04:39 PM (EST)

Good afternoon –

Grace is doing well today. It looks like we will make it through this round of Chemotherapy without any major difficulties. We should go home tomorrow afternoon. She was moved to a semi-private room today, but so far she’s the only patient in the room. The hospital is very full. They have even started canceling pediatric surgeries because there are no rooms for the patients go to post-op.

Grace and Laura have both almost beaten the RSV. Mom is feeling a little better each day as well.

Grace had a special treat last night. The representatives from Make-A-Wish visited to ask Grace about her wish. She told them that she would like to go to Disneyworld. We’re hoping to go in fall and will work on a specific date as Grace completes more of her treatment. She was very excited about their visit and loved the toys and books that they brought. It’s a really nice distraction for all of us to starting thinking about her trip. It also makes us realize how much will happen between now and then……

Thanks for checking in with us.

Tuesday, January 23, 2001 at 02:29 PM (EST)

Quick update –

We all spent the weekend resting as best we could and getting ready for admission this week. Grace and Laura seem to feel a little better each day. Grace was admitted yesterday for her 5th round of Chemo. The docs felt that she was strong enough to start back. Yesterday was fairly uneventful. We got started with Chemo by 3:00 so we will hopefully get home at a decent time on Thursday. Grace has felt good enough to enjoy quite a bit of company. We’ve seen “Darda”, Pastor Greg, Aunt Rene, NaNa, MawMaw, PawPaw, and Laura.

Mom has been fighting off the “creeping crude” all weekend. It seems to have turned the corner last night. She spoke to her doctor and has started on antibiotics today. Please pray that this illness will pass quickly and that we will not start a vicious circle of passing around disease!

The floor is very full this week and we very close to getting bumped to a semi-private room. Pray that we can keep our room. I know that sounds silly, but it’s just so much easier on everyone if we don’t have to share.

Please continue to keep Jon in your prayers. He’s going through the toughest part of transplant right now. Please pray the he has bottomed out and that things just improve from today forward.

Thanks for checking in…….

Friday, January 19, 2001 at 05:00 PM (EST)

Good afternoon –

Just a quick update to let you know that Grace and Laura are doing well today. They both still have some sniffles and coughs, but nothing too serious. Grace’s skin is still very irritated by the dressing used on her central line. Her skin is just very sensitive to all the adhesives that we have tried. We changed it again today and are a little happier with the appearance so far.

We’re planning a quiet weekend for everyone to recuperate. Thanks for continuing to keep us in your thoughts and prayers.

Have a good weekend.

Thursday, January 18, 2001 at 05:08 PM (EST)

Good afternoon –

Well the roller coaster has taken another dive. The Duke trip on Tuesday went fine, but it took longer than expected. It was nearly 8:00 when Grace got home. After Grace got home she started having watery eyes, a runny nose, and blotchy skin. We were hopeful that it was just a reaction to the blood transfusion. Unfortunately it was not. Grace was up and down most of the night. Both Grace and Laura woke up with colds on Wednesday morning. We contacted Duke. After some discussion they decided that we could go ahead with pheresis as long as Grace was having no symptoms of bacterial infection.

Things went well with the stem cell harvest. Grace was cooperative and we harvested the gross number of cells that we had hoped for. We’ve since found out that the stem cell yield was fair but not what we had hoped for. We will find out next week if the harvest was clean. While we were at Duke we were able to speak to Tim and Melissa (Jon’s parents). They told us that Jon was doing well, but was experiencing the severe mouth sore associated with high dose chemo. Please pray for Jon and his family. He is getting his stem cells infused today so we can pray that his condition will continue to improve over the coming days.

Grace had a good night, but Laura was up all night. We also noticed this morning that Grace’s central line was “blush” from a small quantity of blood in the line. The skin under the dressing also looked very irritated. We called in to the doc at Baptist and he suggested that we flush her lines (this cleared the “blush” appearance) and to bring her in to the clinic to check her skin. Mom took Laura to the pediatrician first and she checked out fine. She didn’t have any evidence of ear infection, strep, chest congestion, etc. Mom brought Laura home from Dr. Trowell’s office, switched kids, and took Grace to clinic. The skin under her dressing was very irritated, but not infected. They changed to a different type of dressing. While in clinic the transplant coordinator from Duke called and asked that a RSV screen be run on Grace due to her cold symptoms. It came back positive. GREAT……… RSV is a type of cold virus that is very dangerous for people with suppressed immune systems, infants, and people with other health problems. So now we know that both Grace and probably Laura have RSV. The stem cell harvest that was taken yesterday can not be used. RSV, and any virus for that matter, can survive the process of freezing stem cells. If we used the tainted cells for transplant it could be fatal for Grace!

At this point it looks like we will completely cancel pheresis until after another round of chemo. We have tentatively scheduled chemo to start Monday, but that will depend on Grace’s recovery. All in all this has been a very disappointing day. The one encouraging event occurred in a phone call to Dr. Tim Driscoll. He is the Neuroblastoma guru at Duke. Dr. Driscoll has been coordinating the care that Grace has received at Duke and will be the “main man” when we go for transplant. I was immediately impressed with Dr. Driscoll’s knowledge of Grace’s case. In particular since he has never met any of us. He calmed our fears concerning Grace’s bone marrow involvement and our chances of getting a clean harvest at some point. We had scheduled to met with Dr. Driscoll tomorrow, but that will have to be delayed yet again since we aren’t coming for pheresis. We are very much looking forward to a long “face-to-face.”

Pray that this RSV hits the road soon and that we can get back on schedule. Don’t forget about Laura. She’s having a tough time too!

Thanks for checking in.

PS Please pray for a little girl named Ashlynn Hill that Susan met on Tuesday at Duke. She’s less that a year old and has cancer of the eye. It is very likely that one of her gorgeous blue eyes will have to be removed in the coming months and there’s the possibility that she will lose both eyes. Ashlynnn’s mother is understandably devastated and asked specifically that we add her to any pray lists that we know of. Please remember Ashlynn and her family. They are searching for answers that will be hard to find (such as “Why did this happen to my precious girl?”) We know were they’re coming from!

Tuesday, January 16, 2001 at 1:17 PM (EST)

Good afternoon –

Everyone had a good day yesterday. Grace took a late afternoon nap and didn’t want to go to bed last night! Grace, Mom, MawMaw and PawPaw are at Duke today. Laura and Nana are at home. We like to recruit the entire family! Thank God they’re available! Grace needed labs before her stem cell harvest. Her hemoglobin was lower than is recommended prior to pheresis, so she is getting a red blood transfusion before coming home today. Everyone should be home before it’s too late.

Dad, Mom and Grace will be heading back to Durham tomorrow for the first of three stem cell harvests. It should be a simple and relatively painless procedure. Please pray that we would get an adequate harvest and that it would be clean of Neuroblastoma cells. We will not know if the pheresis is clean for about two weeks.

Please pray for Jon and his parents Tim and Melissa. Jon will be transplanted on Thursday. The next few days and weeks could be difficult for Jon. Please pray that his transplant will go smoother than would seem possible.

Check out the new photos!

Thanks for the prayers, messages, and support. Have a great day……..

Monday, January 15, 2001 at 09:36 AM (EST)

Good morning –

The Cain Clan had a great weekend. Saturday we all went to Tanglewood to feed the ducks, play on the playground, and watch the horses and riders practice jumping. Then we went to Arigato Japanese Steak House. We thought that Grace would enjoy seeing the Hibachi-style cooking. She did like it but Laura was absolutely mesmerized. She didn’t take her eyes off of the chef. Afterwards, Grace said that her dinner was better than Macdonald’s, a very high complement. After dinner we went to the mall to find Grace and Laura matching outfits for a portrait. We’re going to try and set up the photo for later this week.

We went to PawPaw’s birthday party on Sunday afternoon. We had to celebrate in shifts because Grace’s cousin was a little under the weather. Grace was disappointed that she didn’t get to play with her cousins, but she had a good time anyway. Sunday night Grace felt great. It was almost like we had her back for a few hours.

We had to start back Neupogen injections Sunday night. Neupogen is used to stimulate the bone marrow to produce more stem cell. Grace typically takes Neupogen following her Chemotherapy in order to reduce the number of days that her WBC is lowered. She is taking it now to facilitate her stem cell harvest that starts on Wednesday. Unfortunately, Grace woke up this morning experiencing bone pain. Bone pain is a side effect sometimes experienced when using Neupogen. The last time Grace experienced this side effect she refused to walk. When she does walk she does so very awkwardly.

One of Grace’s friends, Mattie, is coming to our house this morning. It’s Mattie’s birthday and we’re having a party for her. Grace couldn’t comfortably go to Mattie’s party and be exposed to so many toddlers in a confined space. So we’re just bringing the party to our house! Hopefully when Grace gets some pain killers in her system and Mattie gets to our house, she’ll forget all about her bone pain. The opportunity to play with other kids seems to be the best painkiller of all!!!

Please pray that this busy week will go well. Also pray that the stem cell harvest will be clean and that two days of harvesting will be adequate. If so, we can discontinue Neupogen on Friday!

Thanks for checking in.

Thursday, January 11, 2001 at 04:28 PM (EST)

Good afternoon –

Grace and Laura are doing well. Everyone went to bed early last night. The girls were doing fine, but Mom and Dad were getting grouchy! Laura had her 6-month check up and immunizations today. She’s doing great. NaNa kept Grace at home while Mom and Laura visited the doc. They had a great time. We think that Laura is going to be more of an average sized kid than Grace. Grace tends to tower over other kids her age!

Grace was very sweet about Laura’s check up. She overheard us speaking about Laura needing shots. Grace immediately got very upset. She said that only big girls got shots. She let us know that Laura was a baby and she was too small to get shots. She then told us that she could get the shots because she was a big girl. We couldn’t believe how much empathy she displayed. The girls really are crazy about each other. No one can make Laura laugh like Grace can!

We’re still cruising along with no treatment. It’s going to be hard to go back! This is our tentative schedule for the next few days.

Jan. 12 – Blood work and central line care at Brenner’s
Jan. 16 – Blood work at Duke
Jan. 17 – Pheresis at Duke (stem cell harvest)
Jan. 19 – Pheresis at Duke
Jan. 22 – Pheresis at Duke (optional – hopefully we’ll get enough cells on the previous two visits)
Jan. 23 – Jan. 26 – Chemo at Brenner’s

Thanks for checking in…….

Wednesday, January 10, 2001 at 04:37 PM (EST)

Good afternoon –

Grace and Laura have had a great day. MawMaw and PawPaw came over this morning and took Mom and the girls to the Village Soda Shop for lunch. Everyone enjoyed their lunch. Following lunch, they went across the street to Tanglewood Park. Tanglewood has Grace’s all-time favorite playground. Grace was very tentative when she first arrived. After being at the park for just a few minutes, she was wearing the place out just like old times. She kept going until she just didn’t have any energy left. We may run a few errands tonight.

Thanks for checking in. Have a good day.

P.S. Use the link to Jon Powell’s site to check out a good picture of Jon and Grace.

Tuesday, January 09, 2001 at 05:04 PM (EST)

Good afternoon –

Grace and Laura have been doing very well. We all went to Target last night. It was a big outing for us. Grace had a great time running around the store. It’s amazing how friendly and cooperative everyone is when you have a bald kid! Over the past few days we have been catching up on our shopping. We’ve been spending money like a rich housewife at the mall on a diet coke high!!! It’s amazing how quickly you can run out of basic items like paper goods, cleaners, cooking oil, and salt when you don’t shop on a regular basis. Fortunately, we’ve finally stocked up on everything we need.

Grace has been eating nonstop for about 2 days now. We’re hoping that she will gain some weight that she can use as a buffer when she loses her appetite again after Chemo. It’s so nice to see her eating. We’re enjoying this procedure-free week! There has been nothing to do other than her daily central line care.

Thanks for checking in…..

Monday, January 08, 2001 at 09:44 AM (EST)

Good morning –

Okay, okay, okay…we get it - you all are spoiled to frequent updates. We do apologize. It has been a very, very busy couple of weeks. Grace has been feeling very well since our last update. We had a great Christmas/New Year’s/Aunt Tam’s birthday on New Year’s Day. Grace went in for her pre-surgical assessment last Wednesday in preparation for her central line. All of her blood counts were horrible. We were so surprised because she had been feeling so well. We all stayed Wednesday evening to get platelet and red blood transfusions.

We went to Duke’s Children’s Outpatient Center on Thursday as scheduled. At first impression the facility is amazing. The outpatient center is less that one-year-old and it is incredible. It looks much more like a cross between Disneyworld and a children’s museum than a hospital. Looking back on the experience, I believe that the beautiful and child friendly environment made for a much easier transition for Grace. She was able to complete the pre-pheresis physical and blood work on Thursday. We will not be able to have the pheresis (stem cell harvest) this week as we had scheduled. The team at Duke uses the platelet count as a “litmus test” to determine if the bone marrow is healthy enough to successfully harvest. The un-transfused count must be a minimum of 75,000 – Grace’s was 11,000 on Wednesday before her transfusion. We have re-scheduled her pheresis for January 17, 19 and 22. This has been disappointing, but there is an upside. Grace would have normally gone in for Chemo today, just as she is starting to recover from the previous round. Due to the delays in pheresis, we will get Grace for two full weeks feeling well!!!

While we were at Duke we were able to visit with the Powell’s in their “vacation home.” It was so encouraging to visit with them. Grace and Jon played well together. It was funny to see both of their bald heads bobbing up and down the hall! Jon showed Grace his central line and seemed so calm about it. That has made a huge difference to Grace. The fact that we meet the Powell’s when we did is one of the experiences where we can see God at work. Jon is going tomorrow to start high-dose Chemo, the final step prior to transplant. The next two weeks will probably be really rough for him. Jon will be in-patient until the transplant is complete and his counts recover sufficiently. Keep the Powell’s in your prayers daily.

Grace’s counts looked very good on Friday morning (with the assistance of two transfusions and Neupogen injections), so we were able to move forward with placing the central line. This is Grace we’re dealing with, so of course there was a bump in the road. The surgeon’s first attempt at placement was unsuccessful, so he had to make a second attempt. It went well. As Dr. Letton describes it, she now has a “garden hose” coming out of her chest. Grace has handled it well. In a few more days I don’t think she’ll even notice it.

We plan to be as “normal” as possible this week while Grace is feeling well. It’s so nice to have her back for just a little while. Thanks for your prayers, support, and patience.

Friday, December 29, 2000 at 03:40 PM (EST)

Good afternoon –

Grace is having a great day. Last night when Dad got home, Mom had made a nice home cooked dinner. As soon as Dad walked in the door, Grace started insisting that she wanted corn on the cob. How can you say no to veggies after what she’s been through? Nothing would suit but for Dad to load up Grace and head to the grocery store. Food Lion was also unacceptable. She had to go to Harris Teeter so she could snack on cookies, get a balloon, and purchase a bouncy ball. That girl is going to require a lot of deprogramming when this is all behind us! She also enjoyed a quick visit from her cousins Ben and Hannah last night after they visited the Festival of Lights.

Mom took Grace to clinic today. Her counts were kind of a mixed bag. Her hemoglobin was fine. Her platelets were very low, so she received a platelet transfusion. Her white counts also came back very low…but we don’t believe the numbers. She should feel much worse if the white counts are a low as the test indicated. We think the test was inaccurate. We’ve already seen that happen. She does have to continue her daily Neupogen injection through Monday.

We should have a nice weekend. We’re going to PawPaw and MawMaw’s on Saturday for dinner. We will also be celebrating Christmas/New Year’s/Aunt Tam’s birthday on New Year’s Day at NaNa’s house. Hopefully we will get a little down time as well.

Thanks for the continued messages, cards, support, and especially prayers! Have a great New Year!!!

P.S. Mom met yet another family that had just been diagnosed with ALL (Leukemia). The mom had “the look” that let you know she was in a state of shock, confusion, denial and dismay. We’ve discussed with other parents how we can read the pain in the face of parents as they come to terms with a cancer diagnosis. Each time you see “the look”, the feelings of those first few terrifying days are so real again. Please pray for this 3-year-old Lexington boy and his mom.

Thursday, December 28, 2000 at 04:39 PM (EST)

Good afternoon –

Things have gone well around the Cain house today. Grace’s ailments seem to be subsiding. She has been eating and drinking very well today. Her nausea finally seems to be diminishing. Whatever has caused her to resist walking has diminished. She has been walking quite a bit today and she even took a spin around the driveway on her new trike that Santa brought. Based on her temperament and activity level we suspect that her white count is on its way back up. Hopefully, after tomorrow’s clinic visit, she will be released from her daily Neupogen injection for a few days. Laura has felt well today too. She slept well last night (she’s not been sleeping very soundly) and it has definitely shown in her attitude! Laura is growing up before our eyes. Each time that we have the chance to really play with her it is amazing how she’s changed!

For today’s highlight Grace and Laura decorated a tree for the birds. Dad had taken the Christmas tree outside and propped it up in the wooded area behind our house. Mom, Grace and Laura made “ornaments” for the birds, squirrels, and chipmunks. They cut up oranges and apples and spread peanut butter on bagels and topped them with birdseed. Then Grace and Mom decorated the tree while Laura took a nap. It was so nice for Grace to enjoy doing this type of activity. It was right down her alley!

We are continuing to coordinate for Grace’s stem cell harvest. The next two weeks are shaping up to be very hectic. We pray that Grace will continue to feel stronger and mellower everyday. We are really going to be pushing her very hard to get everything done on schedule. It looks like she will have at least 3 visits to Brenner’s and 5 visits to Duke over the next two weeks. Grace will then return to Brenner’s for in-patient Chemo. There are many reasons to pray that this will be our only required harvest!

We’re hoping for an uneventful evening. Our entire outlook on life seems to revolve around Grace’s condition. When she’s feeling well anything seems possible, but when she’s feeling really bad – things seem impossible. Praise God that anything seems possible today!

Thanks for checking in.

Wednesday, December 27, 2000 at 09:52 AM (EST)

Good morning –

We had a very nice Christmas. On the 23rd Grace had a visit from Santa. He came in the afternoon traveling not in his sleigh, but in a real live fire truck. Grace, and the neighbors’ kids, were very excited to see Santa and to get to sit behind the wheel of the fire truck. Santa brought a stocking with goodies, a stuffed bear, and a baby doll with pooh bear accessories (sleeping bag and stroller). She couldn’t have been happier. The only downside was that Laura slept through the whole event. A family that was traveling with Santa is going to Disneyworld for their Make-A-Wish event. It sounded like a first-class trip. I think that finalized our decision to go to Disneyworld in the fall for our Make-A-Wish as well. We would like to thank the Advance Fire Department for a job very well done.

Christmas Eve started out on a questionable note. Grace really didn’t feel that well in the morning. Somehow we were able to get everyone to MawMaw and PawPaw’s house for lunch. Then we had our Christmas miracle. Grace did not stop the whole day. She ran around with her cousins for hours. It was by far the most active she has been since early September. It was so nice to see her feeling well. She loved all her gifts and even her lunch and supper. Laura had a great day as well. The day couldn’t have been much better.

Christmas Day was nice. We weren’t able to go to NaNa’s house because several people had colds. We rescheduled the whole event for New Year’s Day. I think it worked out for the best. Grace and Laura were both pretty exhausted after the big day before. We took things very slow around our house. Grace didn’t open the last gifts under the tree until after 10:00 PM. She didn’t want to walk on Christmas Day and still wants to be carried most of the time. We theorize that this may be caused by bone pain associated with her daily Neuopogen injection. We will need to confirm this in clinic today.

We were able to find out a little more about the Neuroblastoma cells that were found in the latest bone marrow aspiration. Grace will be getting her central line and stem cell harvest as scheduled. A sample of the harvested stem cells will be sent to California to repeat the test. If that test comes back clean, we will be clear to use the harvested cells for transplant as scheduled. If the sample shows any Neuroblastoma cells, we will repeat the harvest and testing following additional rounds of Chemo. There are a limited number of cycles that may be repeated until Grace’s bone marrow will be too damaged to produce an adequate stem cell harvest. At that point we would have to change gears and prepare for an allogeneic BMT (requiring a donor). This is a much tougher procedure that we would like to avoid. Regardless of the procedure type Grace must have a BMT to be cured.

Please pray that the next few days will pass uneventfully. Grace’s counts will be at their lowest through the weekend. We also ask that you begin to pray for a clean stem cell harvest the week of January 7th. This will be a much larger hurdle that we had anticipated. Also, please pray for Jon Powell and his family. He is preparing to have the mega-doses of Chemo required just prior to transplant. This is a critical time that can be affected by many seemingly minor factors.

As always, thanks for checking in.

Friday, December 22, 2000 at 04:23 PM (EST)

We have very little new information since we got the bad results from the bone marrow aspiration yesterday. Fortunately, Grace was discharged this morning. We are still waiting on calls both from the Dr. that developed and completed this new test and from the Dr. at Duke that heads the pediatric BMT unit. Hopefully we will hear from at least one of them later this afternoon. We’re hoping for more information on how this result affects Grace’s case.

We are praying that Grace’s counts will hold out at least long enough to enjoy Christmas (although her white count is rapidly dropping). We are planning to get together with the Cain’s on Christmas Eve and the Cecil’s on Chrisms Day. We so hope that Grace will feel up to enjoying the time together with her extended family.

Quite honestly we have been crushed by yesterday’s news. Please pray that we will be able to put this information behind us and move forward in fighting this nasty disease. I hate Neuroblastoma and what it does to families and especially the children fighting it. How can this happen to an innocent child?

We will be on information blackout for a few days. We will have another update after Christmas. Thanks so much for all of the prayers and support.

Thursday, December 21, 2000 at 05:20 PM (CST)

Well the mountain top was wonderful while it lasted but the valley is back again in full force! Today has been both frustrating and disappointing.

Before Grace's recent surgery, a third bone marrow aspiration was done. This was done at the request of Duke and was sent to a lab in California. This lab has the latest technology and has increased capabilities to pick up Neuroblastoma cells in the bone marrow at a more sensitive level. While her marrow results had been clean at Brenner's, now her marrow shows that the cancer has metasticized (sp?) there. It has probably been there all along, it just hadn't shown up on the less sensitive tests. It doesn't really change her treatment as far as we know and while it doesn't really give us new survival stats, it is not good. We have so many questions and none can be answered right now for a number of reasons. Everyone is on Christmas vacation that has any insight into how this will effect her BMT. Also this test is new and not routinely requested by Brenner's, so the test interpretation is not clear as there are no good stats available. We were just not expecting this and bad news is always so much worse when you are not braced for it. We had been feeling so confident for the first time since diagnosis and reality is so raw. We know in our rational minds that this result is irrelevent in some ways because Grace is already being treated as aggressively as possible and it is not as if her treatment has been inappropriate up until this point. We knew that there were other cancer cells lurking around but in our minds we had equated these final five treatments and the BMT to an insurance policy and now we are looking at active disease again. In another week or so, the final slides of the tests will show if the Neuroblastoma cells are growing in the lab. If they are growing, then it means she has active disease. If they are not growing, there is no way to conclude if the cell detected were dead or alive.

We were so hoping to get Grace home tonight. Now it is looking like she won't finish until 1:00 am. My instinct is to take her home anyway but that is always what we want to do after bad results; go home, put both girls in our bed; hold them tight; and try to make the world go away. As Grace said today,"I don't think I'll ever get to go home again."

This admission has been really tough for strange reasons. Grace has felt pretty good but she hasn't been able to leave her room because of all the germs floating around. Laura has been at home which always makes it more difficult emotionally for us to be separated. Also our schedule had been nuts with medicines given at unexpected times!

Please pray for our peace with these new results and that the cells in her marrow will not grow. (We have to cut this update short to meet with her doctor-will try to update tomorrow.) Thanks for your prayers! We continue to need them!

Wednesday, December 20, 2000 at 04:55 PM (EST)

Good afternoon –

We’re over half way through this admission! Grace has been feeling fairly well. She seems a little tired, as her hemoglobin is on the low side. She will probably receive a blood transfusion before going home tomorrow. She will get Chemo this afternoon and again tomorrow afternoon.

Grace enjoyed a visit from her cousin Jacob, Nana, and Aunt Tammy today.

Thanks for checking in. We’ll try to update again before going home.

Tuesday, December 19, 2000 at 03:01 PM (EST)

Good afternoon –

Grace is doing well today. She is tolerating this round of Chemo very well so far. She hasn’t had any nausea so far (of course we have her completely pumped full of anti-emetic drugs). She has a roommate this time, but it hasn’t worked out that bad. We take so much stuff to the hospital that its kind-of embarrassing. Grace’s roommate came in with two small bags!!! Grace met with Santa again today. She was so proud that she had her picture taken with him. What a big girl!

We were able to go to the holiday concert at the coliseum on Friday night. Grace and Laura both had a great time. We were able to meet Nana, MawMaw, PawPaw, and Mama Ruth at the concert, so it was truly a family affair. We were also able to go to an outdoors-live nativity on Saturday. Thank goodness it was a drive-by event since it was pouring down cold rain. Poor baby Jesus had a very rough entry into the world! We had hoped to attend church on Sunday, but we cancelled our plans after we found out that Chicken Pox is currently prominent in our community. Chicken Pox can be a scary disease for children undergoing Chemo.

Pray that we will continue to have a good admission. Also pray that Grace will be protected from infection. The 6th floor is currently a hotbed of highly communicable and serious diseases. We are keeping Grace confined to the room. We’re also not bringing Laura to the hospital this visit.

As always, thanks for your prayers and support.

Monday, December 18, 2000 at 06:21 PM (CST)

Good evening -

Very quick update. We had a good weekend. We were able to get in some Chirstmas spirt.

Grace was admitted for Chemo today. Everything has gone pretty well. This place is packed so we are in a semi-private room (yuck). It could be worse, we have good roomates.

More info on Tuesday.....

Friday, December 15, 2000 at 03:30 PM (EST)

Good afternoon –

Things have been going well for Grace. She gets stronger every day. We are planning to get in the holiday spirit this weekend. We will be going to a Christmas concert/sing-a-long tonight at LJVM coliseum. On Saturday we’re planning to go to a live nativity at Hillsdale Baptist. Sunday we are hoping to go to church. Our plans will depend on how much Grace feels like doing.

We’re still planning to go in for Chemo on Monday. Grace should be admitted through Thursday. We got a little more information about the tumor pathology today. Everything looks great.

Thanks for checking in on us. We’ll have another update on Monday.

Have a good weekend!

Wednesday, December 13, 2000 at 10:09 AM (EST)

Good morning –

Praise God!!! Things have been going even better than we have prayed for!

Grace slept fairly well Monday night, although her sleep was interrupted somewhat by periodic “jerking” episodes. Tuesday morning Grace had a visit from Greg Little, our pastor. While she enjoyed her visit with Pastor Greg, I must admit that he was “outdone” in her eyes by another visitor later in the morning. Santa Claus came by and gave Grace a Ord from Dragon Tales. She was really psyched up. Grace even told Santa what she wanted for Christmas. She was also quick to let him know what Laura wanted as well. Fortunately, Santa seemed to have all these items in stock. Grace then decided that she wanted to get in a wagon and tour the 6th floor for 2 – 3 hours. This tough girl amazed the surgical staff.

Later in the afternoon, Grace enjoyed a visit from her cousins Hannah and Benjamin. Darla also came by and brought some Lupper (late lunch/early supper). Dr. Letton, the surgeon that performed the resection, came by to take a look at Grace. He was so impressed with her condition that he sent us packing! Dad had to be called back from work to take everyone home. The trip home was uneventful. Grace was really glad to be at her house. She also enjoyed playing with Laura. She slept very soundly in her own bed (much of the night with Mom and Laura). Dad slept very soundly in his bed as well!

Mom got the opportunity to discuss the initial results of the tumor pathology with the surgical and oncology physicians. In a word it looked fantastic. The tumor was almost completely dead. From the initial report, looks as though all the borders were dead as well. The portion of the tumor that was butted against her liver suffered the greatest amount to cell spillage. Again, all the previously active cancer in this area was dead. We will have a little bit more information on Thursday, but we’re expecting conformation that everything is great.

We have a little better grasp of our schedule over the next few weeks. As always, this is all tentative. Grace will be admitted to Brenner’s next Monday (December 18) for another round of Chemo. It should be complete on Thursday. This round uses different drugs and should be easier on her body than the last two have been. Mom and Dad (and maybe Grace) will travel to Duke on Friday to discuss the stem cell harvest and BMT and to tour the facility. Grace should be healthy and at home for Christmas!!!!! Grace is tentatively scheduled to have her central line placed on Friday, January 5th. This minor surgical procedure is required for stem cell harvest and BMT. The central line has drawbacks (its external, requires daily at-home care, and is high risk for infection), but it also has some nice benefits. Grace will no longer need finger sticks for blood tests and she will not require peripheral IV’s. It will also greatly reduce the frequency of accessing her Port-a-cath. We will then travel to Duke the week of January 7th for a stem cell harvest. We expect this procedure to be outpatient. They will harvest for 1-2 hours every other day until they harvest enough stem cells. This should take about a week. If every thing goes smoothly, she will start another round of Chemo at Brenner’s on January 15th. This sounds kind-of full time doesn’t it? From January 15th forward, we will return to 21 day cycles until Graces completes 8 rounds of Chemo.

We cannot express our gratitude to everyone who has been praying for Grace and our family. Our prayers have been answered 10-fold. It has been so long since we have gotten good news and now it seems that everything is coming up roses. We recognize that there will be many more valleys, but we are enjoying the mountaintop while we’re there. We also wanted to recognize the tireless efforts of the staff at NCBH. They have been great. Everyone from the CNA’s and housekeeping staff to the physicians and nursing staff have been so wonderful. They all seem to want to comfort and cure Grace just has desperately as we do. We can never express our gratitude adequately. Please keep the staff, Jon Powell, Mitchell Martin, and the many other families fighting this disease in your prayers. Thanks for checking in.

Monday, December 11, 2000 at 02:31 PM (CST)

Amazing Grace! That is what she is! Three days after major surgery and she is sitting up, asking for ice cream (that she can't have yet), wanting her cousins to come and play, and insisting that her Daddy carry her down the hall to pretend to be in a parade. Obviously, her recovery is going well!

Grace had her NG tube removed this morning and is now allowed some sips of juice. Hopefully, she will be able to progress to a liquid diet this evening or tomorrow. Her epidural was removed at noon and we are working on managing her pain. So far, she is doing fairly well and has been about as comfortable as you can be following abdominal surgery. She is certainly going to be quite sore for a while. She has had some difficulty resting because of persistant jerking in her sleep. It could be that all of the painkillers etc. have had a toxic build up in her system or it could be a psychological issue. In either case it shouldn't be harmful, just annoying. She has been in very good spirits, but is starting to grow weary of wanting to play and not really feeling like it. We are just glad that she is motivated to play and is not afraid and/or crying like her previous surgery. We are not sure when she will be discharged. Our best guess is Thursday or Friday.

We should know our next step by then. We will either start another round of Chemo or have a central line placed and go to Duke for stem cell harvest. Either way, Grace will be back in the hospital around next Monday. Hopefully, after a fairly intense December/Early January, we should be back to our previous 21 day cycles through about April.

Thanks for your continued prayers and support. We should hear back from the pathology of her tumor Tuesday or Wednesday, so pray for good results (a large percentage of dead cells that have responded to the chemo and especially for the outer edges to be dead as this would indicate the status of any tumor tissue that was left behind).

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jer 29:11

Saturday, December 09, 2000 at 04:08 PM (CST)

We are all mentally and physically exhausted but we are so happy! It almost seems like a dream that the monster tumor that has been sucking the life out of our baby is as Grace says "in the trash can"! While a long road still stretches out in front of us, the removal of Grace's tumor was such a huge hurdle!

Grace was in surgery for about 5 hours yesterday. She required a blood transfusion(s), but was stable for the surgery. Her blood pressure etc. was not a problem as is sometimes the case with major surgery. While we were updated every hour, we were only told of her status and had no idea of how the resection was progressing. Needless to say, it was a difficult wait. Late into the surgery, we got an update from a nurse that had actually been in the OR. We pleaded with him to give us all the information that we knew they were not ready to tell us. It is amazing how in high stress situations you try to read a hidden meaning into everything, generally negatively. You find yourself tryng to read the body language of the custodial staff and volunteers as if they are the surgeons in the OR. Fifteen minutes later we got the fantastic news that the tumor was out and that the resection did not require the loss of Grace's right kidney. The joy and relief that washed over us is indescribable. We thought that we knew joy on the days that our girls were born but it was nothing like knowing that we are still very much in the game in the fight for Grace's life. Of course, reality had to return and we had to hear all the details. Dr. Letton was able to resect 95-97% of the tumor. This is typical for a neuroblastoma's tentacle like shape. While not 100%, it is still considered to be the gross total resection that she needs for cure. The tumor was compared to three squashed tomatoes on top of each other. There was less difficulty than expected removing it from the kidney but the liver and vena cava were tricky. Part of her liver was shaved off in an effort to remove active disease/scar tissue. There were evidences of scar tissue/possible tumor left on some of ther major vessels/arteries as they can only peel tumor off to a point that is safe to keep from cutting them. Hopefully what was left is dead tumor and anything active will be taken care of through the remaining 5 rounds of chemo and the BMT. There was cell spillage as expected but it was the consistancy of motor oil indicating old blood and dead cells. There were also holes burned into lymph nodes indicating a positive response to chemo. We feel very good about the visual indicators. We will have more pathology back from the tumor the middle of next week. For now, Grace is very comfortable with her epidural and is starting to wake up a little. She continues to be stable, have no signs of infection, and was moved out of ICU this afternoon. She is off the ventilator and oxygen and hopefully will have her NG tube out tomorrow. She is becoming more alert and is not aggitated or afraid this time.

There are no words to thank you for your prayers. We have felt the peace and strength that you have asked for us and Grace has certainly experienced healing as well. As we can't thank you, we are finding it hard to thank the God that has held us in his arms this week. How do you begin...? Our child is tumor free...what an awesome God and what an awesome close to an anxiety ridden week! Please continue to pray for Grace's recovery and ultimate cure!
(Also a special thanks to Sandy Hendrix for updating the site yesterday when we were too crazy to do it and for holding our hands during the surgery!)

Friday, December 08, 2000 at 06:33 PM (CST)

Great news!! The tumor is out! Grace is doing well. Please check back later for more details and information. Thank you for your prayers and support.

Thursday, December 07, 2000 at 02:17 PM (EST)

Good afternoon –

Grace had a good evening on Wednesday and has had a good day today. She will be admitted tonight around 6:00 to get ready for her surgery Friday around 1:00. Please pray for us in the following way:

1. Give us all peace of mind and assurance that the surgery will go well,
2. Give Grace patience tomorrow as she will be NPO all day (nothing by mouth),
3. Most importantly pray that her surgery will be a success, that the tumor will be completely resected (this is critical) and that it will remain intact with no spillage of cells.

Thanks a lot. We’ll give an update as soon as possible.

Wednesday, December 06, 2000 at 1:47 PM (EST)

Good afternoon –

We’ve posted new pictures. Check them out.

We had a good evening on Tuesday. Nana, Gandmuddie (I bet no one else has one of these), Uncle Wendell, Aunt Tammy, and Jacob (Grace and Laura’s cousin) brought dinner. It was really nice for Grace to have a chance to play with Jacob. She so rarely gets the opportunity to play with other children these days. We worry that she is growing up too fast as she is always surrounded by adults. Both of the girls slept well last night and are having a good day.

Grace’s great-grandmother, Mama Ruth, is having eye surgery today. Pray that she will do well and recover quickly. Also, please keep the Powell’s in your prayers. They are in a trying transition from receiving Chemotherapy at Brenner’s to preparing for BMT at Duke. Pray for peace and a smoothing of this transition.

Grace is still on schedule for her surgery Friday. She will be admitted tomorrow night and have her surgery Friday after lunch.

Thanks for checking in.

Tuesday, December 05, 2000 at 02:26 PM (EST)

Good afternoon –

Grace had a good night Monday. She was pretty exhausted from her CT scan, but after a nap she was up for a second trip to Tanglewood to see the lights. As we were leaving Grace asked, “can we go through again?” She really loves looking at the lights this year. Maybe she’s headed for Vegas some day (lets hope not)! Laura also loves looking at the lights as well. She is turning out to be just as intense of an infant as Grace. She enjoys looking at the colored lights for about one minute. Then she tries to throw herself out the window of the van so she can eat the lights. When she’s unsuccessful the gets mad. How did we end up with these “Type A” kids? It shouldn’t be in their genes. I guess there are a few things that we would like to remove from their genetic makeup!

Mom had a big day planned today. She was dressing the girls in their Christmas dresses for a snapshot. They were also all going to the theater together to see “102 Dalmatians.” Two preschoolers – one mom – we’ll see how that goes. This Neuroblastoma stuff gives you a lot of courage!!!

Dr. Letton, Grace’s surgeon, contacted us today. He has determined that her tumor is ready for resection. Grace will be admitted on Thursday for pre-surgical stuff and will have her surgery at 1:00 Friday. Dr. Letton feels confident that the tumor can be removed at this point. His biggest concern is with cell spillage. The tumor has responded well to Chemotherapy, so now it is much like a water balloon rather than a solid tumor. This greatly increases the chances of spilling cancer cells as the tumor is removed. Hopefully, these cells would be dead, but we can not assume that. Each additional cell that is not retrieved is one that Chemotherapy or radiation must kill. Dr. Letton may also place Grace’s central line depending on how well the surgery goes. The central line will be used to harvest her stem cells and for the BMT.

Thanks for your continued prayers and concerns. It is very encouraging to know how many people are following Grace’s progress. We feel like so many of you are sharing in our sorrows and rejoicing in our victories.

Late breaking news flash. Grace and Laura loved the movie. Laura watched all but the last few minutes. Then she ate and went to sleep. Grace liked the movie, but enjoyed the “bouncy seats” even more. Her favorite part was the drink holders. She had her milk on her right and her juice on the left. What a couple of nutty kids…….

Monday, December 04, 2000 at 03:10 PM (EST)

Good afternoon,

It’s been a nail biter, but we have good news!!!

Grace had a pretty tough day on Saturday. She had little energy, ate very little, and acted like she was very uncomfortable. She started acting a little bit more like herself on Saturday night. What a difference a day can make! Grace woke up on Sunday like her old self. She was very active and had an increased appetite. She comes through every time just when you need it. We even went out and looked at Christmas lights on Sunday night (add stopped for a happy meal).

For the big news, we went in this morning for Grace’s CT scan. There was a mix up with her sedation (Grace requires something a little out of the ordinary). She ended up going through the scan without any sedation and doing great. This little delay just added to the pressure. Mom and Dad were about to explode by the time the scan was complete. We had to wait about an hour for the results…..that was a long hour, but well worth it! Her tumor has shown significant shrinkage. It also appears more cystic, meaning that the cancer cells are dying. Praise God! We will not know until tomorrow if the surgeon wants to move forward with the surgery on Friday, or if he feels that it would be better to wait for a couple of more rounds of Chemotherapy. Either way we are definitely going in the right direction.

Grace asked that we stop at McDonalds on the way home for another happy meal. That would have never happened in our former lives. Grace was lucky to get fast food once a week. Now, we’ll give Grace any food that will fatten her up a little bit. I’m afraid to think what her eating habits may be once this is all behind us. Obviously, that’s the least of our concerns.

Grace’s blood counts looked much better today and her mouth sores started healing this weekend. That’s three for three from Friday’s request list!!! God has blessed us so richly today. Thank you all so much for all of the prayers that you have been sending up for Grace. It has made all the difference this winding journey.

Friday, December 01, 2000 at 02:20 PM (EST)

Good afternoon –

Grace has been struggling a little bit the last couple of days. She has not been feeling as well as normal. This is due to her lowered blood counts. Her low-grade fever has been oscillating between normal and 101 (the threshold for hospitalization). We started to suspect that her platelet count must be extremely low on Thursday night. She continued to bleed after her daily shot. The shot also caused a hematoma (a pocket of bleeding under the skin), but fortunately it’s not dangerous. Mom, Dad and Grace all went to clinic this morning. Grace’s platelet count was very low (5,000 vs. 160,000 – 360,000 for a norm). Her white count continues to be very low as well. She received a platelet transfusion and was able to go home.

We will be returning to NCBH on Monday (if not before for increased fever). Please pray for Grace in the following ways:

1. That her white count and platelet count will recover over the weekend.
2. That her mount sores (which have become increasingly worse) will heal.
3. Most importantly, that her CT scan scheduled for Monday at 8:30 will reveal a significantly smaller tumor.

Thanks for your prayers and support. On a good note, please link to Jon Powell’s website. His family received great news today. Thank God for this answered prayer!!!

Wednesday, November 29, 2000 at 04:55 PM (EST)

Good afternoon –

Just a quick note to let everyone know that Grace has had another good day. She has a few mild effects from the lowered white counts (irritability and low-grade fever), but this is a tremendous improvement over her last round! For today’s highlight, Grace, Laura, and Mom all took a 2-hour nap this morning in Grace’s bed! Poor Dad was hard at work!!!

Thanks for checking in on us. Have a good day!

Tuesday, November 28, 2000 at 04:59 PM (EST)

Good afternoon –

Grace had an excellent day on Monday. She spent much of the day outside with Mom and Laura. It was nice for her to get some fresh air. We all baked Christmas cookies together Monday night.

Mom took Grace to clinic today for blood counts. Her hemoglobin is fine, her platelets are dropping, and her white count is nearly bottomed out. She will go back for counts on Friday. We expect that she will need a platelet transfusion on Friday, but fortunately this transfusion goes much quicker than red blood. Thank God that even as her white count has dropped she has no fever or infection. Please pray the she can avoid fever as her white count works it way back up!

Overall everyone is doing well. We’re praying for a fairly routine week. If Grace’s white count has recovered, we plan to go to a Pediatric Oncology/Hematology Christmas party at Parkway Presbyterian on Saturday. Many of Grace’s buddies that she has met at Brenner’s will be there. It is both encouraging and saddening to see so many children living with cancer. When this is all behind us, we hope to find a way to give back something positive to these kids.

Thanks for checking on us. Pray that the updates will be short and uneventful this week!

Monday, November 27, 2000 at 08:43 AM (EST)

Good morning –

Everything is going well with us. We were able to get home at about 6:00 PM on Thursday. Darla had an incredible Thanksgiving dinner waiting for us when we got home. She brought fruit salad, cranberry salad, tossed salad, stuffing, creamed potatoes, sweet potatoes and apples, pumpkin pie, yeast rolls, and a 20 POUND TURKEY. She must have been planning for 12 people! It was all great. We had said it didn’t really matter if we had Thanksgiving dinner or not, but after seeing the meal on the table, we were very glad to have something special for the girls.

We were able to go out Friday and get a Christmas tree. We normally go to the mountains and cut a tree, making a big day out of it. This year we just went up the street to a nursery and purchased a tree. It was so easy and convenient, we may be doing that every year! We spent the day Friday and Saturday decorating for Christmas and recovering from the latest hospital stay. Grace started feeling a little more tired on Sunday. She rested most of the day. Aunt Teresa came by and visited. We also went out for a very quick trip to look at Christmas lights.

Grace is supposed to go to clinic on Tuesday. We may take her today if she continues to feel sluggish or irritable. We expect that her hemoglobin is low and that she will need another blood transfusion. That’s just the nature of the beast!

Thanks for checking on us. Please keep Grace’s CT scan in your prayers. It’s scheduled for next Monday.

Thursday, November 23, 2000 at 11:58 AM (CST)

Happy Thanksgiving!!!We are finishing up the last drops of round three. Three down and five to go! We should get home by late afternoon/early evening. Grace continues to do very well this time. She has only gotten sick twice. She hasn't been nearly as stressed. She has had all of her favorite nurses and that always makes her stay easier. She is so in love with a few of them. Tuesday she insisted on wearing red pants because that was the color that "her Lindley" had on. Then yesterday, she tried to score points by telling Lindley that she looked like Barbie (a high compliment for Grace).

December 4 will be the day for Grace's CT scan. This will tell us if/how much the tumor is shrinking. This will determine the need for surgery on December 8. We are very nervous about this scan as it is such a huge hurdle to jump. We so appreciate your continued prayers. Please also continue to be in prayer for Jon Powell. The Powells will make their move tomorrow and Jon will be having an MIBG scan on Wednesday. The scan will re-examine the lesions found at Brenner's this week and will determine the next course of treatment. We cannot begin to tell you how precious this little boy is! He is so beautiful and is so brave. We cannot wait until the day that he is finished with all of his treatment and is cured! Also we have come to know about yet another baby with cancer. His name is Mitchell Martin and his web site address is the same as Grace's, just with his name instead of hers. Please keep this family in your prayers as they are scheduled to begin a round of chemo tomorrow.

Today we have been enjoying family time watching the parades. Tonight we plan to eat Darla's Thanksgiving meal and watch an Arthur Christmas movie on PBS. Tomorrow we hope to get our Christmas tree. We usually go to the mountains to cut a tree but this year it may be too cold for the girls. At any rate, we are looking forward to spending the weekend together before Grace's counts get too low.

Thanks for checking in on us. Being in the hospital on Thanksgiving is not so bad, as long as we are all together!

Wednesday, November 22, 2000 at 11:59 AM (EST)

Good morning –

Can you have a good round of Chemo? If there is such a thing Grace is experiencing it. She has only been sick once, a tremendous improvement from last time. She has been sleeping well and has been active during the day. Much of the improvement has come from a better understanding of the anti-nausea drugs and how they work for Grace. As with a lot of the treatments, every kid is affected in a different way.

Laura is having a good week as well. She has been spending mornings at home with NaNa. We will all spend the morning at the hospital together tomorrow. Aunt Teresa will be coming for a visit as well. We should be able to get home in time for everyone to eat a late supper for Thanksgiving. A good friend from our church (Darla) and her mother will be bringing us our meal.

We hope that we will be able to purchase and decorate our Christmas tree over the weekend. Since we have been to Tanglewood’s Festival of Lights, Grace has been very excited about Christmas lights. I’m sure she will ask us to cover the house with lights this year!

Thanks so much for all of your support. I can’t tell you how much the meals, errand running, toys, books, cards, guestbook messages, and especially prayers have meant to us. We feel overwhelmed by the response to our needs. It’s very hard to be unable to thank each of you personally. Please, please know how much every gift and kindness has meant to all of us. I’m not sure how families that are not blessed with a extensive support system can make it through this type of an experience.

We hope each of you has a wonderful Thanksgiving. Give all of your loved ones an extra hug tomorrow from us!

Monday, November 20, 2000 at 08:33 PM (EST)

Good evening -

Mom just tried to update the journal and she lost everything, so here's Dad's attempt. Please overlook any mis-spellings!

We had a really great weekend. We all went out Friday night to finish up our Christmas shopping for the girls. They both had a really good time at the toy stores. Saturday we went to the Festival of Trees at the fairgrounds. Laura sat on Santa's lap, but Grace decided that she would just look from a distance. They both enjoyed looking at the trees and seeing all of the performers. We also went to a model train show while we were at the fairgrounds. Grace got the chance to be the "engineer" and operate one of the trains. She was so serious about her duties! Grace also talked us into a trip to McDonald's and Krispy Kreme. We wanted to make sure we had a good diet prior to our hospitialization! Sunday we were able to go to church for the first time in many weeks. I'm sure this has been the longest Mom and Dad have ever been away from church. It was so refreshing to be there. We didn't realize how much we had missed it. It was really hard to not stay and visit with everyone but it is a delicate balance between getting out and staying germ free. Even a simple cold is so serious for Grace. Sunday the girls really enjoyed seeing the snow. We went to the Festival of Lights at Tanglewood that night.

We came in this morning for Chemo. Things have gone as planned. We found out today that Grace has been tentatively scheduled for surgery on Deceber 8. She will have the surgery if the tumor has not responded to the Chemo. She will also have surgery if the tumor has had significant shrinkage. Please pray for the second option!!! If the tumor is shrinking, but not enough for a clean removal, we will wait on more Chemo before attempting a removal. The Doctors seem guarded but hopeful. A complete resection of the tumor is crucial for Grace's survival. Please pray hard that the tumor can be safely and completely removed

We met another family today. Laura is an infant who had a brain tumor that has been removed. She was given very little hope several months ago, but she has responded well to Chemo and surgery and she's doing well. Pray for continued positive outcomes.

Also, please pray for the Powell's. They are currently going through a very tough transition time from treatment here at Brenner's to their BMT at Duke. Pray that Jon's is cancer-free and for his parents strength and peace.

We'll be here through Thursday. Thanks for checking in.

Friday, November 17, 2000 at 04:30 PM (EST)

Good afternoon –

We finally have photos! Check out a few shots of Grace and the rest of the family.

Grace, Laura, NaNa and Mom when Christmas shopping for Dad today. We are trying to get ready for the holidays early around our house. We’re going to be doing a lot of catalog shopping this year!!! Mom and Dad are going to take Grace and Laura out again tonight to get their Christmas gifts. I have no doubt that they will get far more than they should!

We are planning to go to the Festival of Trees and a model train show this weekend. We may work in a few other fun distractions before Monday as well. We’ll be going to Brenner’s on Monday to start Grace’s next round of Chemo. We probably will not have a chance to update the website until then.

We hope you have a good weekend. We plan to! Thanks for the prayers, support, and messages.

Thursday, November 16, 2000 at 05:00 PM (EST)

Good afternoon –

Grace and Laura are having another good day. Yesterday afternoon UPS dropped off a package at the front door. After noticing the www.smarterkids.com box Grace said “Good, Aunt Teresa must have sent more toys.” Someone is getting very spoiled! It’s hard not to spoil these brave girls. Grace and Laura have spent today at home with Mom. For the highlight of the day, Grace, Mom and Laura spent the morning dancing to a Ricky Martin CD. I bet we could videotape that session and sell it!

We’re trying to put together some special plans for the girls this weekend. We have to balance the need to keep Grace away from large crowds in enclosed spaces and avoiding the cold and messy weather that we’re having. I’m sure that we’ll come up with a compromise. Thanks for the continued support and prayers.

Have a good day!

Wednesday, November 15, 2000 at 04:55 PM (EST)

Hello everyone,

Just a quick note to let you know that everyone in the Cain Clan is doing well. Grace, Laura and Mom went on a big outing today to Kmart. They also visited Gerri at the beauty shop to move Grace a little closer to a “Jon Powell” haircut! Everyone had a big time.

Thanks for checking in on us. We’re planning on having very little news for you the rest of this week (that’s a good thing). Please keep the Powell’s in your prayers as they prepare to move to Durham for Jon’s BMT (bone marrow transplant).

Tuesday, November 14, 2000 at 03:38 PM (EST)

What a difference a day makes!

Grace had a great day at home yesterday. She ate like a horse. She played outside in the leaves and in her sandbox with MawMaw and PawPaw. She slept through supper and then watched videos. In other words – she acted like a 2-year-old kid! Today Mom had to take Laura to the pediatrician’s office. She got a clean bill of health. Grace stayed home with NaNa and played. Laura and Mom even went to Target to stock up on hats and to Harris Teeter. It has been a red-letter day so far!

We tried to post pictures on the website today, but it didn’t work so well. We’ll try again in a few days.

We’re hoping that everyone will remain healthy for the next few days. We are working on some special plans for the weekend.

Thanks for checking on us. Have a great day.

Monday, November 13, 2000 at 10:50 AM (EST)

We are packed and finally ready to leave the hospital!!! We are waiting for Grace's discharge papers and a prescription to come up and then we can go HOME!!! We never realized how much we would come to appreciate having everyone under the same roof at night!!! Grace had a blood transfusion last night and her hemoglobin came way up (12) so she should have more energy. Her other counts were good too. Her platelets held their own and her WBC was a huge 15! (although elevated from Neupogen injections-but we will take it!)

Yesterday we had a four hour pass to take Grace out for a while. We assume that her mouth sores are healing (she won't let us look) because she ate non-stop the whole time we were out. It was so nice to see! We went to Old Salem and the bookstore. Grace picked out a gift for her to give Laura for Christmas in case things continue to be crazy and we don't get back out. It was hard for her to return to the hospital but she did better than expected. It was so nice to have a break and be OUTSIDE!

Laura continues to improve. She actually slept for two consecutive hours last night. What a precious gift sleep is these days. Grace has been asking for Laura for days and can't wait to see her. I don't know how we will get everyone's medicine given on time. We could open a pharmacy!

Grace's port has been de-accessed so off we go... hopefully Jonathan will make it in to work this afternoon. His workplace has been one of our greatest blessings in all of this. They have ministered to us in so many ways through prayers, meals, gifts and most of all their understanding. While maintaining his presence and performance has been a primary concern for Jonathan, his co-workers and supervisors have been so supportive and understanding about his erratic attendance. There will never be adequate words to express to each of them our gratitude. It is really hard to focus on the day to day issues like working, grocery shopping, upcoming holidays, etc. when your family is facing a life-threatening illness. All you want to do is spend valuable moments with your child and store up memories in your heart. We truly feel that the hand of God was at work whenever Jonathan changed jobs in the spring and stopped traveling. We feel so blessed that the Tyco/AMP folks understand our problem and are taking away some of our stress. When this is over and Grace is cured, Jonathan is going to be the most dedicated employee ever.

Thank you for all your prayers! Let's go home!

Sunday, November 12, 2000 at 1:58 PM (EST)

Things are looking a little better today. Grace's counts are all up. The most critical, her white blood count, is up to 2.0, a great improvement. She should be able to go home in the morning if all her counts continue to rise. She will get another transfusion tonight. That one should hopefully "carry her over the top" until after her next round of Chemo. She was even given a four hour pass today to leave the hospital. We just got ready to leave and she fell asleep. We may get a chance to get out of here for a little while and we may not. At least she's resting.

Laura is about the same today. She had a pretty tough night, but we're hoping that she will feel better tomorrow when sister comes home! Keep her in your prayers as well.

Thanks for checking on us! Have a good week ahead!

Saturday, November 11, 2000 at 01:14 PM (CST)

We have taken a few steps forward and a few steps back today. Grace had a pretty good night and was able to get some much needed rest. She had been running a pretty high fever even with Tylenol but she appears to be improving. She has not had a fever today and has not had Tylenol since bedtime last night. Her doctor is encouraged by this development as are her parents! Her cold seems to be going away. She has a lot less congestion and her cough doesn't seem as intense. Her platelet count is up after yesterday's platelet transfusion but is still nowhere near what it should be. Her hemoglobin continues to slowly fall. We are actually hoping that it will go ahead and fall so that we can get a transfusion before we leave this week and won't have to waste one of our precious "good days" getting transfused. Also she will feel like doing more whenever it comes up. Her white blood count is now a .3. This is our major issue for being here. Until that recovers, we are stuck in isolation. We were hoping for more of a recovery today, but we will take any improvement! Hopefully as her WBC recovers, her mouth sores will heal. It is really hard to watch her want to eat and be unable to. She has lost over 2 pounds since Sunday night. Please pray for these sores to heal so that she can eat.

Laura has taken us a few steps back. She was up all night last night. Her fever got up to 102 and she was miserable. Mom took her to the pediatrician this morning and she has her first ear infection. She has antibiotics now and will hopefully improve faster than her immune-suppressed sister! She is such a joy...even sick she was laughing and playing this morning! She started eating cereal yesterday. While it is so hard to manage an infant and a sick toddler, Laura helps us to keep our eyes trained on life and living. Please pray for her healing and her comfort as she spends a large part of her day away from Mom, Dad and big sister. We are so ready to have our family in the same room again. Please continue to pray for the health and peace of all those family members that are helping us so much. As much as we hate being at the hospital, it is even harder to be away when Grace is sick.

We so appreciate everyone's words of encouragement and prayers. Our ability to manage our emotions is so closely related to Grace's daily health. When she feels well, this is all a great deal easier to handle than when we are watching helplessly as she suffers. Jonathan and I have both struggled with our anger this week. It has been quite a roadblock in our faith as our hospital stay stretches on indefinately. We have been comforted by your prayers for us as we go through these nights when sleep won't come because our minds are too full and our hearts are too heavy. On a positive note, last night, a friend from church (Tonya) brought our dinner to the hospital. In talking with her, she told us that she was so angry that this horrible thing had happened to Grace. I think that is the first time that anyone has said that to me. It was exactly what I needed to hear last night. It somehow gave me comfort as I walked the floors with Laura. (Her dinner was very tasty too!)

Please continue to pray also for the Powells. As crazy as it may sound, the doctors and nurses at Brenner's have so quickly become such a comforting part of our lives. I don't like to think about when our care transfers to Duke and we have to find our way again. I am sure that they are nervous about a new setting, new treatments(radiation), and basically facing the unknown without faces that have become familiar during the past few months. Please pray for their peace and strength and Jon's complete healing. What a wonderful day it will be when we hear that he is in remission!

Saturday, November 11, 2000 at 01:14 PM (CST)

Friday, November 10, 2000 at 05:05 PM (EST)

I guess after yesterday’s depressing message we need to give a little bit of good news. Grace is feeling better today than she did yesterday. Her temperature is elevated, but not as much as yesterday. Her cold symptoms are present, but lessening, and her ears look improved. She is sitting up in her bed and enjoying stories and videos today as well. Her blood counts are still very low – her white count is still bottomed out, her hemoglobin is dropping, but not enough for a transfusion yet, and her platelets have nearly bottomed out. She received a platelet transfusion today that should take care of that issue. We are expecting that she will get a red blood cell transfusion tomorrow or Sunday. The only new problem today is mouth sores. These sores make eating uncomfortable and difficult. They are a fairly common symptom of lowered blood counts. The staff is trying to use some numbing mouthwashes to make her feel more comfortable and to encourage her to eat.

Laura’s cold is not any worse. We’re hoping that it doesn’t turn into an ear infection like Grace’s did. She’s doing well overall and is a joy to her grandparents who are keeping her during the day.

Pray that Grace and Laura will continue to improve daily. We will keep everyone posted on their progress. Thanks for all the supportive messages. They really make a difference.

Thursday, November 09, 2000 at 1:28 PM (EST)

Today's rain suits our mood. Grace feels horrible. Both of her ears are infected, she is coughing so much that she can't rest, her nose is running onto her pillow, her throat is too sore to eat and to top it all off, the blood culture done on Sunday has started to grow so she possibly has an additional bacterial infection in her GI tract. We will be here until at least Sunday or Monday. Grace's white blood count is .1. She just has nothing left to fight with. Her platelets are also falling rapidly and she will probably have to have a platelet transfusion later this week. I just can't even think about the risks involved in all these transfusions because she has to have them.

To add to our fun, Laura got up with a cold and cough today. Now she can't be around Grace in case it is not the same virus. She is home with MawMaw and PawPaw today screaming her head off because she wants to nurse for comfort. I will have to go home early tonight because I have had to leave her so much in the past week, we have used all the milk I had stored for her. Not that she wants it anyway.

Today is one of those overwhelming days when I am miserable to be away from either of my girls. They are both so sick. They both want their Mama. And they have to be separated to protect Grace. My heart is just broken for them and this madness that they are having to endure. The weight of our responsibility to them is so heavy today. The sobering thought is that no matter what the rest of us are going through is that Grace is going through so much more. It is almost more than I can bear to watch her feeling so bad.

Please pray for our family. We hope that Grace and Laura will be feeling better early next week so we can have at least 4 or 5 days to enjoy prior to coming in for Grace's next round of Chemotherapy.

Praise God that we have grandparents that can step in and love Laura and comfort her when she is sick. We are also so thankful that we have a nearby hospital that can care for Grace. Even more so, I am so thankful that if both families are going to have to endure these challenges, that God put the Powells in our path. Melissa and Tim have been such a voice of calm and reason for us when our lives seem to be spinning out of control. They help us to stay grounded and to stay focused on our goal: Grace and Jon beating Neuroblastoma and being happy and healthy!

Wednesday, November 08, 2000 at 09:39 PM (EST)

Here we go again! We feel as though we have not had a moment's peace in a week and a half. Grace has continued to run a low grade fever and is miserable with a cold and cough. Her appetite has been awful and it is starting to be a struggle to keep her hydrated. At 4:30 today her temperature started to rise with a spike of 103 at 5:30.
We brought her back to the hospital tonight to be examined. It turns out that her ears are pretty inflamed. She has been started on antibiotics and fluids but she still feels pretty bad. The good news is that we got to direct admit to the sixth floor and got to skip the ER. Also some of our favorite nurses are here tonight and they were the ones that accessed her port. It was not too traumatic for her this time. We will probably be here for a few days until her counts recover and they make sure that there is no secondary infection. It seems so bizarre to be admitted to the hospital for an ear infection! We had just started to feel more comfortable about taking her out and trying to be normal. After this, it is going to be really hard to expose her to the world during cold/flu season. The simplest thing is just so serious for these kids. We are so praying that we did not expose Grace's friend Jon to this crud.

As always, thanks for checking on us. Please pray that the rest of us, especially Laura,can avoid this cold and that Grace will be 100% soon. We so miss her stories and jokes when she feels so bad.

Wednesday, November 08, 2000 at 12:20 PM (EST)

Hi everyone…

We continue to be overwhelmed at how supportive our family and friends have been. We may grow accustomed to never cooking, cleaning, doing yard work, or servicing vehicles again. This is going to be a great lifestyle when Grace is better! Seriously, the assistance has been needed and very much appreciated. We will never be able to write thank-you notes or express verbally how much all of this has meant. This website is one outlet we have to express our deepest gratitude.

Grace had a pretty tough day yesterday and last night. We expect that along with the cold that she is neutropenic (low white blood cell count). This makes you feel bad and irritable. We hope that she will recover by the weekend so she can have a semi-normal week next week prior to going back for treatment again. Grace will go in for a clinic visit tomorrow. We’ll find out blood counts then for sure.

Have a great day.

Tuesday, November 07, 2000 at 12:46 PM (EST)

Hi everyone…

Things have improved since our last update. Grace completed her second transfusion and came home about 6:30 PM yesterday. Her fever spiked to 103 F at about 8:30 PM yesterday. Fortunately the oncology team let us use Tylenol to reduce her fever and we didn’t have to go back to NCBH last night. Grace continued with a low-grade fever and cough throughout the night but she was able to sleep fairly well. We did get some very encouraging news prior to leaving Brenner’s yesterday. The oncology team does not feel that Grace’s fever is coming from her cold. They also don’t think that her rapidly dropping hemoglobin is solely a result of the Chemotherapy. They theorize that both the fever and the dropping hemoglobin are symptoms of her tumor being destroyed by the Chemotherapy drugs. If this is the case – we can definitely live with these relatively minor symptoms!!!!! Please pray that their theory is correct. We still have a few weeks before a CAT scan will confirm or deny their suspicions.

Grace is feeling better today. She still has the cold, but she was able to play with MawMaw and PawPaw today and is now taking a much-needed nap. Tonight some of Dad’s co-workers are providing supper – so maybe we will have an easy night.

Mom took Laura to Dr. Trowell yesterday for her 4-month check up and immunizations. Everything went well. She’s growing and is healthy as a horse. She’s in the 55% for weight and the 95% for height just like Grace. If only Mom and Dad could be more like their daughters!!! We’re hoping that they will send Mom and Dad on an elaborate vacation some day with all the money that they will be making in the WNBA.

As always, thanks for all of the prayer and support. We’re amazed how wide the umbrella of support has been spread. We also enjoy reading the updates to the guest book.

Monday, November 06, 2000 at 03:54 PM (EST)

Neuroblastoma really stinks!!

Especially to parents like us that like to make concrete plans. This is a learning and growing experience for our family. Saturday went pretty much as planned. We spent much of the day at home catching up from a week at the hospital. MawMaw and PawPaw came over and built shelves in the garage for us. We also had a chance to visit with the Powell’s at Brenner’s and to go by the mall (Grace insisted). Sunday morning Grace woke up with a low-grade fever and a slight cough. After speaking to Grace’s oncologist, we made a trip to NCBH so they could have a look at her. Since it was Sunday, Grace had to be admitted through the Pediatric ER. They did a CBC and discovered that her hemoglobin was very low. The plan was to transfuse blood and re-check her hemoglobin. In taking a third blood draw for the type and cross Grace’s port-a-cath (permanent IV access) clotted. This is bad. We were afraid that Grace may have to get her port-a-cath surgically replaced. Grace’s oncologist was called to the ER and was able to save the cath. This was about a four hour, very draining experience for everyone. The ER visit was one of the most difficult moments for far.

Grace did receive IV antibiotics and a transfusion on Sunday night, but her hemoglobin did not recover enough for her to go home. She is currently receiving a second transfusion and IV antibiotics. She should be able to go home tonight.

Please pray that this unfortunate episode has not set Grace back too far psychologically. She had just started to trust the doctors and nurses at the end of her last visit. Also pray that the mild cold that she currently has does not turn into something worse as her white blood counts continue to drop.

Thanks for the prayers and support. We look forward to reading our messages every day!

Friday, November 03, 2000 at 11:00 AM (EST)

Praise God! Since our last update on Wednesday evening Grace has been nausea-free. She (and Dad) slept very soundly Wednesday night only waking for a few minutes while her nurse administered anti-nausea drugs. Grace had a great day on Thursday as well. She has figured out that the playroom is a “procedure-free zone.” We now have to drag her away!!! That’s fine with us…its great to see her enjoying her visitors and the other kids. We were able to go home around 2:30 on Thursday. All the way home Grace kept saying “I had such a wonderful time.” It is amazing how resilient these kids are. I can’t imagine an adult feeling that several days of nausea, vomiting, headaches, finger sticks, port-a-cath access and de-access, and getting a peripheral IV would be wonderful, but to Grace it’s becoming a part of her routine. I think she feels every kid goes through this as they grow up.

Thursday night was amazing. The girls (Susan, Grace, and Laura) were all in the bed by 8:00. We all slept like rocks. There were even long periods of time that all four of us were in our own beds at the same time…that hasn’t happened in quite a while. We are planning a fun weekend before Grace’s blood counts drop. Friday Susan and NaNa are taking the girls to the grocery store (Grace loves Harris Teeter) and to a craft show. On Saturday we will run some errands and have some fun at home. We hope to go to church on Sunday morning. Jonathan has a co-worker (Cathie) that has miniature horses and bunnies. We hope to visit Cathie Sunday afternoon.

You’ll notice that we’ve added a link to Jon Powell’s website. Jon is another 2-year-old who is battling Neuroblastoma. Jon’s family has been very encouraging to us. As an example, we’ve talked to Grace about loosing her hair. It has already thinned considerably. We were able to visit with the Powell’s just prior to being released from Brenner’s on Thursday. We talked to Grace about how cool Jon’s haircut looked. After her bath on Thursday evening, Grace was so disappointed that she still had hair. She said “I want Jon Powell’s hair cut.” Please keep Jon in your thoughts and prayers. He is taking his last chemotherapy treatment this weekend, and will be going to Duke on December 4 for his bone marrow transplant.

As always, thanks for all the prayers and support.

Wednesday, November 01, 2000 at 06:33 PM (CST)

What a difference a day makes! Grace has had a great day! She has had a lot of energy and has played all day. This morning she went to a clown show where she watched "Dickie" do all sorts of tricks with bubbles. He had her in stitches! This afternoon she got to hear a cello and a guitar played by students from the NC School of the Arts. Laura enjoyed the music as much as Grace.

Grace is now on her last bag of chemo for this stay. She is finished with the stuff that makes her really sick for this round. She was very sick during the night (8 times). Today her peripheral IV infiltrated and she had to have it removed. As an answer to a hastily spoken prayer she did not have to have it put back in. Her chemo has actually infused a little quicker than expected so we may get to go home as soon as lunch tomorrow. We are so ready to be home!

Today Grace received the most beautiful gift! A quilt created by her church family, friends, and neighbors. Different families and individuals each took a square and personalized a message of encouagement and love for Grace. There is everything from the handprints of children, bible verses, ladybugs!, and all of her favorite characters (Elmo,Pooh,Clifford,Snoopy). Then a talented friend (Amy) put all the squares into one incredible quilt! Grace absolutely loves it! She has asked to look at it many times today. We wanted to let each of you know how much we appreciate the thought and love that went into this project. We will bring it with us during each stay (however it may have be removed from her bed when we have nights like last night...she went through so much bedding that there was no more on the 6th floor!)

We may not have an update for Thursday because of our discharge and the possibility that Jonathan may not get to work and Susan may not get to update from the hospital. Thank you for all of your prayers during this admission! Two treatments down and six more to go! As Melissa (Jon's Mom) says " Everytime she gets sick and every hair that falls out- that's another dead cancer cell!!!

Tuesday, October 31, 2000 at 07:26 PM (CST)

Grace is plugging right along on her second day of chemotherapy. She was very sick during the night, but has been better today. One of her drugs makes her sicker than the rest and she is finished with it after tonight, so hopefully the nausea will diminish somewhat. Her appetite continues to be good at times and for that we are thankful!

Her day was actually a little mixed up. She was really tired this morning from being sick during the night. So, she went to sleep at 11:00am and slept for three hours. This meant that she missed lunch and most of the Halloween party . She did ,however, get to be in a parade which she really loved. It is tough to be here on Halloween when she should be out trick-or-treating, but the folks here have made a great effort to make the day fun.

Today has been a difficult day emotionally for the parents. Grace's hair loss has accelerated rapidly to the point that we are all constantly covered in hair. I think that it will be even harder when the brows and lashes go. Thankfully, hair doesn't seem to bother two year olds as much as Moms (especially those that have loved putting hairbows in their daughter's hair). It is just such a visable reminder of the battle she is fighting. It is almost a final validation that we must face the facts of the seriousness of her illness.

We have been so touched by the number of our friends and family that offered to be screened for bone marrow donations to Grace.
Your willingness to help us in this fight has been overwhelming. Grace's bone marrow transplant, however, will be done with her own stem cells (called an autologous [spelling?] transplant). She will receive a central line (external iv) in her chest in a month or so. This will involve putting her to sleep etc. Then, we will travel to Duke for a series of out-patient visits in which stem cells will be harvested from her peripheral blood. The samples will then be purged for any cancer cells (not able to promise at 100%) and stored for her. At the end of her chemo at NCBH, she will go back to Duke and essentially get a last huge dose of chemo and be given back her own cells to make new marrow. After the transplant, she will be in isolation 3-4 weeks. Also, there are possibilities of radiation being done at that time, but it hasn't been decided yet.
Our family will probably be relocating for a minimum of two months, possibly up to six months. Even though Grace will not need a donor, we hope that you will still consider joining the donor list to help someone else. Also, Grace is going to be getting many blood and platelet transfusions, so please do consider participating in local blood drives. Everytime we watch that new blood drip into our baby and keep her alive we are so thankful for the person that took the time to donate!

Thank you for your continued prayers. Please pray that this tumor responds and begins to shrink. That's our first step!

Monday, October 30, 2000 at 06:45 PM (CST)

Today Grace began her second round of chemotherapy. We arrived at NCBH early this morning in hopes of starting early, but the first bags were not hung until 4:00. (One thing we have learned is never to count on things going as planned!) As a result, we will not be finished until Thursday at 4:00 (72 hours). Jonathan had hoped to get to work this afternoon, but he was reluctant to leave until we saw how Grace would respond to these new meds. So since we will be discharged much later than expected, he will be able to work the rest of the week.

This round of chemo is much more intensive than Grace's first dose (because of unfavorable tumor pathology). We are holding our breath to see how sick she will become this time. She has been very brave today. She is still wary of anyone that comes in the room but has been playing more this evening than during her last admission. The VCR in her room was not working and so we had to request that it be repaired. After that, she asked every nurse, resident , doctor, etc. if they were there to fix the t.v.! Chemo is o.k., just don't take away my Winnie the Pooh!

We found out today that we will probably be visiting Duke within the next month to meet with the bone marrow transplant folks. If all goes as planned, her stem cell harvest will take place sometime after Thanksgiving.
It will require a few out-patient visits.

Everyone else is doing well. As usual, Dad will be spending the nights with Grace and Mom will be taking Laura home. Laura is hanging in there! We are so thankful that she is such a good baby and that we have so many extra arms to hold her. Please continue to keep Laura in your prayers as we struggle to meet the needs of both of our girls. It is breaking our hearts to be missing so much of her development and to have so little time to devote to her.

Please continue to pray for this round of chemo to go smoothly. Your prayers and well wishes continue to give us strength and encouragement.

Friday, October 27, 2000 at 12:16 PM (CDT)

Today has been eventful already. We found out the results of Grace’s N-MYC test. The N-MYC was amplified – not the result that we were hoping for. This means that the disease will be more resistant to treatment and is more likely to recur. To combat this, Grace’s Chemotherapy will be intensified and she will require a bone marrow transplant in the spring.

On a more positive note, Grace is feeling great again today. I will not be able to give another update until Monday, so I’ll preview the weekend. We’re planning to celebrate Halloween early on Saturday. Grace and Laura will be dressing up as ladybugs and “trick or treating” with family and friends. We will also find time to celebrate two birthdays on Saturday. On Sunday we will all be working on a Christmas surprise for MawMaw and PawPaw!

Thanks for all the prayer and support. I’ll try to give an update from Brenner’s on Monday.

Thursday, October 26, 2000 at 11:38 AM (CDT)

The last week and a half have been very good for Grace. She is feeling stronger and doing more every day. Today she is going to the park with Mom, Laura, MawMaw and PawPaw.

She will be returning to Brenner's on Monday to start her next round of Chemotherapy. She should come home on Thursday afternoon.

We are STILL waiting on the results of the N-MYC test. This test will determine how aggressive Grace's treatment will be. If the N-MYC comes back amplified, she will have to undergo a bone marrow transplant at Duke following her Chemotherapy and surgery. Please pray that Grace's N-MYC will not come back amplified.

Thank you so much for all of your prayers and support. Susan and I feel that we are able to go on day after day because of the many prayers that are being lifted up for us. As you are praying, please also remember Jon. We met Jon's family during our first admission to Brenner's. He is also battling Neuroblastoma. His family has been a great support to ours.

Tuesday, October 24, 2000 at 09:58 AM (CDT)

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