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Monday, March 10, 2008

Gwen turned five yesterday, March 9th! We spent the weekend in gorgeous Moab, Utah with some of Ben's family. We had a great time! I can't believe my baby is getting all grown up.

For those who have not heard the news, we found out that we are having a BOY! I was shocked, I completely expected another girl, but I am getting used to the idea! Gwen and Anna love to kiss baby brother in Mommy's tummy and sing him songs. It has been fun seeing them get excited for a new sibling.

We are looking forward to Spring, after the long, snowy winter we have had! I will probably not update again until the baby comes in June, so be sure to check back then!

Tuesday, November 6, 2007 12:54 AM CST

Happy Fall!

Here is Gwen as The Cutest Little Red Riding Hood Ever! (More pictures in the photo album) The girls had such a fun time trick-or-treating with their cousins.

We have been enjoying beautiful Utah, although we still do miss Georgia. We are finally under contract with our house in Marietta, so that is a relief. We are supposed to close on Nov. 16th. Other than that, not much news to report! We are doing well. Thanks for checking in with us!

Wednesday, September 19, 2007

Finally, after two days of suspense, we have results! Scans are stable and look great!!! Thank you for your prayers!

Tuesday, September 18, 2007

No results yet on scans, I'll post as soon as I hear anything. Our day at the hospital went great. Gwen was awesome, even giggling through getting her IV stick. Seriously, she is an unusual kid!


Wednesday, September 12, 2007

Hey everyone,
I just wanted to let you know that Gwen's scans are next MONDAY, SEPTEMBER 17th. Please send some prayers her way. This will be our first experience with the Radiology and the Oncology departments at Primary Children's in Salt Lake City (as you'll recall, we have met the ER already!) and I am a little nervous about how it will be. We were SO spoiled at CHOA and it will be hard to go to a new place where nobody knows us.
We have moved into a rental house here in SLC and it is nice to be settling in. However, we have still not sold our house in GA and that is very frustrating. But it has been great to be out here among so much family. Anna and Gwen want to see their cousins every day! So life is good! We so appreciate your continuing prayers on Gwen's and our family's behalf. I'll update as soon as we know her scan results!

Monday, August 6, 2007 12:54 AM CDT

We made it safe and sound out to Utah! We took our time and drove out over a period of four days. I made the family stop in Paducah, KY at the American Quilt Museum, which was amazing. The kids loved crossing the Mississippi, and they loved Wyoming (we saw a bunch of antelopes!) Nebraska was judged "most boring state" but that's only because it was so long--it was actually beautiful with all that farmland. It was neat to see the country change as we crossed so many states.
We arrived in Utah on a Monday afternoon, and in typical Mason fashion, by that evening we were in the ER. Anna had been running around with her cousins, and crashed, splitting her bottom lip pretty much in half. So off we went to Primary Children's on what happened to be their busiest night of the whole year. They had several car accident injuries and life flights arriving. So us with our little split lip had to wait f o r e v e r..... We arrived about 8:00 pm and didn't get home until 3:30 in the morning. So that was our "Welcome to Utah" adventure.
We have been staying with Ben's brother Ralph for a few weeks. We're waiting for our apartment to be ready to move into, which should be soon. We'll rent for a few months while we decide where we want to live. Also we need to sell our house in Georgia!
I have been trying to get Gwen's next appointment set up here in Salt Lake. She is due for scans in September, so I'll post when I have a date for that. Thanks for checking in on us--my apologies for taking so long to update! I don't have my computer yet, so no pictures of us in Utah yet--I just posted a few more from our family reunion in May. Love to all of you, especially our dear friends in Georgia! We miss you!

Friday, June 1, 2007 8:04 AM CDT

Happy Summer! We had a great family reunion in Maryland with all six of my siblings and their families! As you can see from the picture above, Anna and I cut our hair for Locks of Love. Now Gwen has the longest hair in the family! Ben looks pretty good with Anna's lovely blond locks, huh? We were laughing so hard! My brother Joel did the same with my dark hair, with some glorious results.
Anna and Gwen had a blast playing with all their cousins, including the newest addition, baby Robby. They doted on him nonstop.
And now for some big news for the Mason family (NO, we are not expecting a baby)! We are moving to Salt Lake City, Utah in two weeks!!! Ben got a great job offer out there, and we have a lot of family there. We are very excited about the move, but so sorry to leave Georgia. We have loved it here and are leaving behind some dear friends. We felt it was time for this change, though, and it feels good to be starting a new chapter of our lives that does not revolve around anyone's major illnesses! We hate to leave CHOA, but we feel Gwen will be well taken care of at Primary Children's in Salt Lake City.
So, lots to do in the next couple of weeks (um, like sell our house and find a new place to live)! I'll update again once we are settled in a bit...

Wednesday, May 23, 2007 6:29 AM CDT

CLEAR SCANS!!! Yesterday went great, and I will update with more news later... Today we are going to the Survivor Clinic! It is unbelievable to be able to say we have been over two years past transplant.

Saturday, May 5, 2007 9:47 PM CDT

Well, I think I have beat my own record for longest time between updates! Sorry! We are still here!
Today was Anna and Gwen's ballet recital, and it was so cute. Sadly, I did not get any great pictures, but I will post a couple in the photos section anyway. Gwen had a huge smile on her face and she was so happy to be up on stage. Anna gets more nervous (like me!) and it was cute to see her, all serious and trying so hard to get everything right. Afterwards, she asked me if she smiled, and I was like, umm... Of course! (She really didn't, but what are you gonna say?) I was proud as can be of both of them.
The girls and I are getting ready to take off for Maryland on Monday for our family reunion. All six of my siblings and their kids will be there (my sister and her family are coming all the way from China!)so it will be a great. I'll try not to wait too long to update again! Gwen's next scans are May 22nd, so I will definitely post then...

Monday, March 12, 2007 4:57 PM CDT

Gwen had a great birthday! Her chocolate party was her dream come true--all the chocolate she wanted, all day long. I lost count of how many mini cupcakes she ate. Just before bedtime, "Mom, it's still my birthday, can I have another pupcake?"

Ben and I had a great time on our cruise. The girls had so much fun with Grandma that they did not ask for us once! Sounds like we need to do this more often!

Gwen's next scans are scheduled for May 22nd. This is the longest we've ever gone between scans (four months). It's great not to have to go to the hospital, but it makes me nervous to wait so long! We so appreciate your continuing prayers for Gwen's good health. Even not counting the possibility of the tumor returning, there are so many side effects of treatment that we have to watch for. We have been SO blessed this far, and Gwen is the picture of health and happiness. We are so, so grateful for this. Thank you for checking in on us!

Wednesday, February 21, 2007 2:33 PM CST

Not much new to report, just wanted to check in with everybody! Grandma Noelle is coming tomorrow to stay with the girls while Ben and I actually go on a real, bona-fide vacation! We have never left both girls before and we are super excited! We'll miss them, but we know they'll be in great hands. We are going on a cruise to I don't even know where, all I care about is that there will be beaches and sun! Gwen and Anna are both doing great. They are gearing up for their birthdays (Gwen will be FOUR on March 9th and Anna will be SEVEN on April 22nd!) How do they grow up so fast??? Gwen wants a chocolate party, and Anna wants a Swan Lake Ballet party. I'll try to post some new pictures soon! Thanks for checking in!

P.S I did post a couple of new pictures in the phot album!

Wednesday, February 21, 2007 2:33 PM CST

Not much new to report, just wanted to check in with everybody! Grandma Noelle is coming tomorrow to stay with the girls while Ben and I actually go on a real, bona-fide vacation! We have never left both girls before and we are super excited! We'll miss them, but we know they'll be in great hands. We are going on a cruise to I don't even know where, all I care about is that there will be beaches and sun! Gwen and Anna are both doing great. They are gearing up for their birthdays (Gwen will be FOUR on March 9th and Anna will be SEVEN on April 22nd!) How do they grow up so fast??? Gwen wants a chocolate party, and Anna wants a Swan Lake Ballet party. I'll try to post some new pictures soon! Thanks for checking in!

Friday, January 19, 2007 8:34 AM CST

We are devastated by our dear friend Catie’s passing last night. Please join us in praying for her parents, Tre’ and Jenny, who not only had to say goodbye to their sweet girl last night, but are expecting a new baby next week. We love them so much and we grieve with them at this time.

Thursday, January 11, 2007 3:06 PM CST

CLEAR SCANS!!! Hooray!!! I feel so relieved, even though I was sure everything would be fine! Not only that, her hearing test was perfect and so was her heart exam. The first day began with lots of stress and drama--as we were going out the door, Gwen was doing a quick lap running around the tree outside, and she did a full face plant in the dirt! It has been raining here so she had dirt stuck in her eyes, nose, mouth... She gagged and spit up (not much since she was being starved for her test). Then we were late, and stuck in traffic...
We miraculously made it to the hospital only five minutes late, and then got to spend the whole rest of the day waiting, waiting, and more waiting until my butt was numb. Gwen had to drink contrast for more than three hours unstead of the usual two because CT was running behind (although I hate to tattle on them, because we love our nurses there!) Then we had to wait forever to get her radioactive isotope injection for her nuclear medicine scan the next day.
But Gwen was a star patient as usual and was really brave for her I.V. and everything. She loves getting scanned in her "big machine." She held so good and still, except she'd occasionally lean her head back to smile at me!
Then the next day was her hearing test and MIBG. She charmed the audiologists with her sweet personality and general cuteness, and also passed her hearing test just fine! Dr. Rapkin said that we'll test again next year, and then she's out of the woods with the hearing! This is really something to be grateful for, as we have friends who were on her same protocol who have had serious hearing loss from the treatment. Her next test was the MIBG (nuclear medicine scan) and our super patient did it with NO sedation!!! She held perfectly still for 40 minutes! Pretty impressive, if I do say so myself :)
Today was her EKG and echocardiogram and her favorite of all, her exam with Dr. Rapkin. Her heart is one of those things that as time goes on, unfortunately her risk of problems starts to increase. But every year that goes by without any trouble is a blessing, and we are beyond thankful that her little body has been so well protected! Our last stop on our "Tour of Scottish Rite" was our visit with Dr. Rapkin, which mostly involved lots of tickling and laughing! Gwen pretty much starts giggling as soon as she sees him and always gives him a big hug when we go.
The last few days have been so exhausting, I came home and totally crashed this afternoon. I slept for two hours uninterupted while the girls played (I guess they had some catching up to do!) Aaahhhhh, now I feel better!

Monday, January 1, 2007

Happy New Year! Today we celebrated Gwen's one year anniversary of finishing treatment! What a special way to start off the new year! We are all doing great and feeling so blessed to be where we are today. I am posting some pictures in the photos section that show just how far we've come! Gwen has her big round of scans and evaluations coming up next week (the 9th, 10th, and 11th). This will include the MIBG (nuclear medicine scan) that is specific to Neuroblastoma. She will also have CT scans, echocardiogram to check her heart, hearing test, x-rays of her spine, and probably a few other things I can't seem to think of at the moment. Please remember Gwen in your prayers, that not only will there be no recurring tumor, but that she will continue to be protected from side effects of treatment. We are so grateful to all of you for your love and prayers. Check back next Thursday for the report!

Thursday, November 16, 2006 5:49 PM CST

CLEAR SCANS!!!!! Hooray!!!!


Gwen did great at the clinic and hospital today! She loved getting to see her friend Dr. Rapkin, and all her sweet nurses. We do not have the results from CT yet because our scan was in the afternoon, so we'll let you know as soon as we hear... May not be until tomorrow. Thanks as always for all your prayers and good wishes--I knew we had people praying for us when Gwen had to fast until 3:00 in the afternoon today and she did not once complain of being hungry! But boy did she wolf down her favorite Chipotle beans, rice, and quesadilla when she finally got to them :)

Monday, November 6, 2006 8:03 AM CST

Just a quick update to let you know that Gwen's next scans are coming up on November 16th! We really do feel that Gwen has been completely healed of this cancer, but the fact is that neuroblastoma often relapses. We would really appreciate your prayers for another clear scan, and for Gwen's continued health and protection from effects of treatment. We have been SO blessed. I remember at one appointment Dr. Rapkin told us that she should have no trouble keeping up with other kids, but that she would probably "not be a ballerina" (because of nerve effects of her chemo on her feet). He could not have known how that made my heart skip a beat, given my love for ballet. Watching Gwen in her ballet class now, I can honestly not see any reason she would not be able to be a ballerina if she wanted to. My hope and prayer is that no effects of her cancer or treatment will ever stand in the way of WHATEVER her dreams may be.

Monday, October 30, 2006 7:34 AM CST

Happy fall, everyone! We have been enjoying the beautiful weather. We had a great time at the CURE Off Therapy Celebration at Six Flags last week. It was great to march Gwen across the stage and let her announce that she has been off treatment for 10 months! Then we hung out the rest of the day with some good friends. Anna rode three roller coasters, I couldn’t believe it! This is the girl who refuses to go down the slide at Pump It Up! I’ll post some Halloween pictures after the festivities tomorrow night…
Thanks as always for checking in on us!

Monday, October 16, 2006 1:19 PM CDT

By popular demand, here is Gwen in her tutu! She LOVES her ballet class and asks me every day, "when is it Monday??" She and Anna also ask me every day if I have ballet that night (yes, I've started taking classes again after 10+ years away--it has been SO fun!) because Dad lets them watch TV and go to bed late!
Not much news to share, so here is a little story for you:
I had a birthday last week, and got myself a cheesecake at Cheesecake Factory... We celebrated Sunday night because Ben's brother Sam was in town, and anyway I didn't want to miss my ballet class Monday night, the actual day of my birthday. But there was a big piece of cheesecake left that I was looking forward to enjoying after class. Well, at one point during the day I came downstairs and saw two little plates on the table with crumbs on them, and the cheesecake box in the trash. ANNA!!!! It was hard to be mad because she did such a nice job of serving it up and putting the trash away! Those two girls are running their own show, I tell you. It's hard to keep up!
P.S. Big, big prayers for our friend Catie today as she undergoes yet another brain surgery.

Tuesday, September 12, 2006 6:50 PM CDT

Okay, okay, here I am with an update, everyone can stop harassing me! We’ve been busy, but just with normal stuff, which has been great. Some of you might not know that I’ve been homeschooling Anna—I just started this year, and it has been really fun (except for the days when I think, “Am I crazy?”) She and Gwen have been loving all the play time together. They are off in their own world for hours at a time. This morning I was playing with them until they politely asked me to leave (and don’t let the door hit you on your way out!)

Some of their latest antics include: Making water and sparkle soup, Gwen cutting up all of their dolls’ clothes, and my personal favorite, making a swimming pool in their room. Really. I was busy junking out my closet, and they were busy ferrying water from the bathroom to the big blue laundry tub in Gwen's room. By the time I got there, there was a foot of water in there and a very wet carpet. (Plus two very guilty-looking girls in swimsuits) ARGH!!!

Plus, we have yet another ER visit under our belts... This time for Anna, who seemed to miss her black thumb so much that she went and smashed her toe. She was helping Gwen off her stool and it tipped over and fell on her, somehow landing so that it ripped the toenail clean off her big toe. She was freaking out, and I was trying to calm her down, telling her it would be okay, and "don't worry, Mommy's a really good nurse, we'll get you fixed right up..." Gwen chimes in with "And I'm your doctor, Anna! Don't worry!" So I wrapped it in gauze and called the doctor. They had us come in and after they looked at it, decided she needed to go to the ER. Ben had met us by now, and we all stopped at the QT on the way, for some liquid courage (Diet Coke) and a treat for the girls to help get us through the rest of the day, which we knew would be long. Ben and I were laughing that "most" parents would probably have gone straight to the hospital, but geez, this is like a trip to the park for us! So we got to the hospital and had to do a lot of waiting, of course. The registration lady knew us, which is another lame sign that we've spent too much time there... The girls both did great. Anna was super brave and the only really hard part was when they had to give her several shots of novocaine in her toe. They had to sew her toenail back on (which I watched with great interest, thinking the whole time, "Sarah [my sister] would faint if she saw this...") to protect the nail bed until the new nail can grow in. She is doing fine and only had to miss one week of ballet.

Gwen has also started ballet this year and there is no sweeter sight than her in her pink tutu. When she was getting ready for her first class, she told me, “Mom, it’s just a miracle!” (with her cute lithp) and I nearly cried. It IS a miracle! Thanks so much for checking in on us. We love you all

Thursday, August 3, 2006 4:21 PM CDT

CLEAR SCAN TODAY!!!

What a blessing and relief. Even though we always go in expecting a clear scan, there is that little pit in your stomach that knows how your life can be turned upside down in an instant. We have accepted (or at least tried our best to accept!) from the begining that Gwen, like all of us, is in God's hands. This life is just a temporary stop along the way to much greater things. But we are so, so grateful that we have been allowed to keep her here with us. As she likes to say, "we need to be a family all together!" She is never happier than when she has mom, dad, and sister all around her.

And boy did we get a great dose of family time at Lighthouse last week! Wow, it was just amazing... We were so well taken care of by our family partners, Bobbie and Robin, and by all the wonderful staff and volunteers. The time we shared with the other cancer families was so uplifting and strengthening. In this community, we truly bear one another's burdens, and share one another's joys. Thank you, thank you Lighthouse (and especially Melinda, whose amazing vision it was) for making it such a special time for our family.

Thursday, July 20, 2006 8:11 AM CDT

It's been so long since I updated that I almost forgot how to log in! We've been busy having a great summer. We drove up to D.C. and had a fun visit with my family. Gwen and Anna were so excited to see the baby panda at the zoo, Tai Shan, and also Degas' "Little Dancer" statue at the National Gallery of Art. But best of all was spending lots of time with their cousins.
Next up, we are headed to Lighthouse, hooray! Gwen's next scans are scheduled for August 3rd, so please remember her in your prayers and check back then to hear the "all clear!"

Wednesday, June 7, 2006 7:21 PM CDT

Happy Summer everyone! We have been having a great one so far. We have been swimming a lot—you should see Gwen motoring around the pool in her pink life jacket. She just LOVES the water and would stay at the pool all day, every day if she could.
Last Friday we went to the kick off for Rally Across America at Outback. It was a fun event and we were so inspired by these two guys, Austin and Tom, who are biking 5,000 (!!!) miles to raise money for childhood cancer research. There are lots of ways to help them out, so please check out their website!
This weekend the girls and I are off to Maryland to visit my family for two weeks. I hope to make 12-hour drive without losing my sanity (or leaving a kid or two behind at a Wendy’s)! At first I felt really bad for leaving Ben alone on Father’s Day, until I realized, who am I kidding, what better gift than a quiet house all to himself! Happy Father’s Day to all you Dads!

Sunday, April 30, 2006 4:19 PM CDT

We had a great time at Camp Sunshine's family camp this weekend. It was wonderful as always, and the girls had SO much fun. We loved seeing lots of our friends there, and meeting some new ones as well. Thank you so much Kerri and all the amazing Camp Sunshine staff!

Thursday, April 20, 2006 9:52 PM CDT

CLEAR CT SCAN!!!

We had a long day at Scottish Rite today, with CT scan and clinic appointment with Dr. Rapkin. Gwen did great, the nurses in radiology call her their "poster child" for drinking contrast--that stuff is gross and most kids hate it (a lot of kids we know have to have an NG tube to get it down). But not our medicine-loving-girl! She guzzles it. Today was also her first time without sedation, and she did great holding still as a statue for the scan. She was happy to see Dr. Rapkin and we had a good visit with him. Gwen really is doing great and we are SO blessed. Anna is doing well too--she turns six on Saturday! We'll post some new pictures soon. Thanks as always for checking in!

Sunday, April 2, 2006 11:53 AM CDT

Yesterday was the Camp Sunshine Easter Egg hunt. It was great to see so many friends - Jack, Mary Grace, Kylie just to name a few. Also, nurses Deb and Erika from transplant were there helping out. Gwen was a bit surly most of the time (as you can see in the photo with the Easter Bunny) but she still had a good time. We are currently cleaning up a never ending supply of plastic eggs and candy wrappers from the kids Easter baskets.

Sunday, March 12, 2006

Here is Gwen enjoying her strawberry shortcake at her birthday tea party yesterday. They had a fun time. Later that night we went to the ballet Sleeping Beauty, which was a real treat. I asked Gwen what her favorite part was and she said, “The ballerinas!” Well, of course!


Thursday, March 9, 2006

HAPPY BIRTHDAY GWEN!!!

We are off to Camp Sunshine for music class and "pupcakes" with our friends there, and on Saturday we are having a little tea party :) Last year she was in the hospital for transplant and was too sick to eat one bite of cake. This year we are going to really celebrate!!! She was so excited this morning to find that the birthday fairy had come and decorated the house, and the floor of her room was filled with balloons! We'll post some pictures later today.

Sunday, February 26, 2006 8:21 AM CST

Happy one-year-from-transplant birthday Gwen! Yesterday last year was her first of two stem cell transplants. It was kind of shocking to go back and look at the pictures from that day. She has come such a long way since then, and we are SO grateful for all the miracles we’ve been blessed with along the way to her full recovery. Now we are just really enjoying our foray back into normal family life (trying to keep our girls—AKA Dictator and Little Dictator—from bossing us around too much!)

A couple of weeks ago we got to go to Camp Sunshine Day at the Big Apple Circus! We got sit in the front row! It was a great show, and we enjoyed watching the girls’ faces as much as all the action in the ring. As we're getting into the car to go home, Anna asks, "Are we going to do anything FUN today?" WHAT??? Oh, the little ingrate! We had to remind her, HELLO, we've just been to the CIRCUS!!! What kind of FUN ACTIVITY did YOU have in mind!?!?!

Here is another little story any of you moms out there will be able to appreciate: Are you like me, and long for the days when you could take a shower without being harassed every 30 seconds? Lately Gwen has been coming in, opening the curtain, and reminding me, "don't forget to wash your ears!" and so on. Then when she decides I should be done, she brings me a towel (or a washcloth!) and says, "Okay! I'm ready to wrap you up!" Today she actually just chucked a towel IN the shower--here you go, mom! Agh!

So, these are the concerns of our family’s life lately (and you wonder why I don’t update more often?) Thanks for checking in on us!

P.S. I posted some new photos!

Wednesday night

CLEAR MIBG!!!

What a relief after SUCH a long day. Nuclear medicine was running two hours behind schedule--due to an emergency patient, which is always understandable, but how nice would it have been to get a phone call so I could let Gwen take a nap at home. Gwen is such a patient child, but we all have our limits! She was so hungry (couldn't eat all day because of sedation) and so tired. I was practically in tears by the time they finally called us back at 2:30 in the afternoon! I owe a big Thank You to our sweet nurse Monica who let me vent and helped make the rest of the day go so smoothly!
We have the day off tomorrow and are excited to go see our friends at Camp Sunshine for their preschool music class, which Gwen has been looking forward to all week. Friday we have our last scan (MRI), and our appointment with Dr. Rapkin. That will be another long day, but then I think we will have three full months off from doctor visits! What a reward! Thank you so much for looking in on us, and for all your love and prayers!


Monday, January 23

Tomorrow is the MIBG (nuclear medicine scan) injection. They literally inject radiocative material into her body, which will then show up on the scan on Wednesday. She has to take a nasty idodine medicine, which is the first medicine Gwen has decided she actually hates! Fortunately she only has to take 1 ml every day for a week--it's to protect her thyroid from the radiation.

We'll update when we know results, but after the clear CT scan and NORMAL hearing test and echocardiogram, we feel much more relaxed for this week's tests.

I finally posted a few new pictures, featuring Gwen taking her last pill, posing after her first haircut, and admiring the great barrier reef at the GA aquarium! Enjoy!

Wednesday, January 18, 2006 2:50 PM CST

Thursday 3:00 P.M.

NORMAL HEARING TEST! HOORAY!!!

Wednesday, January 18, 2006

Gwen had her echocardiogram today (ultrasound of her heart) and everything looks great! We have been so blessed with Gwen's recovery. It is kind of unbelievable to me that such a small child could go through such a barbaric treatment with so little damage to her organs. She has her hearing test tomorrow, and next week are the MIBG and MRI. She also will have her kidney function tested soon. Lots of long boring days at the hospital, but boring we can deal with! Thanks as always for checking in on us!

Tuesday, January 10, 2006 5:51 PM CST

Good scans!!!
Our day was long but everything went smoothly and Gwen was a star patient as usual. The CT scan showed a lymph node in her belly area that looked enlarged, but they will just check it again in three months and didn't seem to be worried about it. The preliminary report we got from the bone scan is that there are no changes, which is good. She has some areas of her ribs and spine that are eroded, but that is from her original tumor. SO, thank you for your prayers, and for checking in us. We really appreciate all of your love and support!

Monday, January 9, 2006 7:13 PM CST

First of all, a huge “hip, hip, HOORAY” for Catie who got great news from pathology on her brain tumor surgery! We are still praying for her recovery to go well.

Gwen goes in for scans tomorrow (CT and Bone Scan) so we are facing a long day at the hospital. Please remember her in your prayers that she will have a smooth day and of course, that her scans will be clear. All the other cancer parents know just how I’m feeling tonight—terrified. I go for months at a time (since September’s scans, to be exact) feeling great, KNOWING that Gwen is just fine, and along come the scans to turn my knees to jelly. This is a big month for Gwen, with all kinds of scans and tests. Her big post treatment evaluation. Looking at her, it’s hard to imagine anything at all could be wrong with her—but then again I guess it can’t be *that* hard, or why am I a nervous wreck?? I’m trying my best to stay positive, so I’ll just say, check back in tomorrow night for the good news!

Monday, January 2, 2006 6:15 PM CST

I meant this to be a cheerful, “Happy New Year,” “Hooray Gwen is OFF TREATMENT!” kind of update tonight, but the news I just received of our friend Gracie’s passing has left me too full of sadness and emotion for all that. So please just remember this sweet family in your prayers, as well as Catie, who is preparing for yet another brain surgery on the 9th.

Wednesday, December 28, 2005 12:06 AM CST

Merry Christmas! We hope you all had a happy day. We got up and had fun with the girls opening presents, then went to church (then spent a frantic hour packing!) before heading to the airport for our flight to D.C. We've been having a great time with my family. All six grandkids are here (including brand new baby Ashley) and they have been having a ball. We are looking forward to the Anual Pincock Family Dance on Friday night. I should have some fun pictures to post from that, and more Christmas photos too, when we get back home on New Year's Day.

Saturday, December 10, 2005 8:46 PM CST

Visions of Sugarplums dancing in their heads…..

I’ve said lots of times that one of my favorite things about being a parent is getting to experience things through your kids’ eyes. I’ve been looking forward to last night for months—our family outing to see the Nutcracker Ballet. Anna got to go last year and loved it, and this was Gwen’s first time. It was so sweet to see the excitement and wonder in their eyes. Gwen was completely enthralled. Her absolute favorite was the Sugarplum Fairy, and whenever she was absent from the stage, Gwen would ask me, “Where’s Sugar?” She also clapped vigorously every chance she got, which was so cute. It will be a great memory for me.

It has been so special this year to really celebrate the Christmas season. We got a real live tree this week, which promptly died (thanks in part to my genius move of putting it right under a heating vent—but it looked so pretty in the window!) So I sent Ben out to get a new one tonight and we will take better care of this one! We hope you all are enjoying the holidays and taking extra time to remember what we are really celebrating, the birth of our Savior Jesus Christ.

Please remember our friend Catie in your prayers, as she has an important scan coming up on the 13th. Also our fellow NB friend Mary Evelyn, who is beginning BMT on the 16th (she has a new caringbridge site so you need to go to “about caringbridge”; “visit”; and enter “maryevelynking”).

Tuesday, November 29, 2005 12:34 AM CST

Just a quick update to let you know I posted some new pictures! We just returned from a whirlwind week in Utah with all our Mason family. It was wonderful and the kids had a grand old time with their cousins, aunts and uncles, and Grandma and Grandpa. We had a clinic visit yesterday and all is well. The NP thought we must be off Accutane, Gwen's skin looks so good, but really we are right in the middle of round five. We've calculated that her very last day of Accutane will be January 1st! What a way to welcome the new year, huh?

Monday, November 14, 2005 5:36 PM CST

Happy Fall!

We just had a great visit from Grandma Noelle who was here for a week. The girls loved having her here and were so disappointed to see her go! We’ve gotten spoiled this past year with our family visiting so often.

Gwen is doing just great—nothing much to report, we’re happy just enjoying life! I did post some new pictures for you….

Saturday, November 5, 2005 6:23 PM CST

Yes, we are still here! We had such a fun week, beginning with Halloween. It was Gwen’s first time trick-or-treating, and she could hardly take in what was happening. We knock on people’s doors and they give us CANDY??? How fast can I run to the next house? And if I do say so myself, Anna and Gwen were the prettiest princesses in the neighborhood.



On Wednesday we got to have a fun playdate with Jack (check out the pictures!) and Mary Grace (great news on her scan yesterday!). It was really a treat to see them, but we missed Catie, who was not feeling well enough to join us. She is doing better now, and is finally nearing the end of her radiation treatments next week!

It has been so wonderful the last couple of months to start having a more normal routine, and the best part has been getting to see our cancer friends OUT of the hospital! Thanks to all of you who continue to check in on us (even though our updates come less often, we still appreciate you thinking of us)!

P.S.—two more days of Accutane and we will be done with round four! Gwen continues to do well with the crunching up of her pills (which really has to be seen to be believed), but we are looking forward to the two week break!

Wednesday, October 26, 2005 5:13 PM CDT

I just have a minute, but I wanted to post some pictures from the Camp Sunshine Fall Festival. The girls had a blast--I'll update more details later!

Wednesday, October 26, 2005 5:13 PM CDT

I just have a minute, but I wanted to post some pictures from the Camp Sunshine Fall Festival. The girls had a blast--I'll update more details later!

Wednesday, October 19, 2005 10:19 AM CDT

What’s the best color??? WATERCOLOR!!!



We had such an amazing time at the beach this weekend. Watercolor, FL, is a gorgeous beach and resort area and we were blessed with perfect, perfect weather. The only thing more wonderful than the surroundings was the company! Our new Lighthouse family is one we will treasure forever. We knew many of the families there, including Jack’s and Mary Grace’s, who we had a great time sharing a house with, and we had a great time getting to know all of our old and new friends. Besides the ten cancer families, there were about forty volunteers, including Melinda, the amazing woman who dreamed up The Lighthouse Family Retreat and made it a reality for all of us families. Our two volunteer family partners, Rachel and Emily, were just wonderful and our girls became quite attached to them. I have to admit that I am purposely cheating on this journal entry by referring you to Kendrie’s and Jack’s sites for a more complete picture of just how great this weekend was! I am still recovering from the drive home and trying to catch up on laundry, etc (where are those family partners when you need them!) and my brain is not clear enough to be able to report all the details. But I can not say THANK YOU enough to Melinda, Robin, Gwen (big Gwen, that is :)), Clay, and everyone who worked so hard to make this such a special weekend for us. We love you!!!

Wednesday, October 12, 2005 7:15 PM CDT

We went to the pediatrician today and she confirmed a urinary tract infection! She started Gwen on an antibiotic and she'll call us tomorrow with a new prescription once the cultures grow, and they can target the infection more specifically. What a relief to have an answer for this fever! So we are off to the beach tomorrow, Hooray!

Tuesday, 10:30 p.m.

Gwen STILL has a fever (102.7 tonight). We have called the doctor several times, and we'll probably take her in to the pediatrician (who she has not seen since her diagnosis!)tomorrow just to have her checked out. She is not having any other symptoms and is drinking plenty, so they will most likely tell us it's just a virus and to wait it out... But it is hard not to worry. We are still planning on leaving Thursday for Lighthouse, and I can't even tell you how disappointing it would be to have to miss our time at the beach (again!) We would greatly appreciate your prayers for Gwen to get well soon!

Sunday, October 9, 2005 9:40 A.M. EDT

Still a little fever, but Gwen is doing much better. She was awake more yesterday (although she did sleep in till NOON!!!) and this morning she woke up at 9:00. So she is definitely on the mend, and we should be good to go for our long-anticipated Lighthouse beach weekend on Thursday. Thanks as always for checking in on us!

P.S. Happy Birthday to me :) Last year for my 30th birthday I had back surgery and Gwen was in the hospital for a fever; this year I am so thrilled to spend the day (as anti-climactic birhdays are after a certain age!) just going to church and hanging out with my family!
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Thursday, 1:00 p.m.

It's after noon, and Gwen is still sleeping.... I went in at 8:00 to check on her, and her fever was down to 102.7--I gave her some more motrin and a drink of water. As always she hit me up to "thing a thong" and she went right back to sleep. She's so good at letting her body rest when she needs it (she slept a ton when she was recovering from transplant). So hopefully she'll be feeling better soon. I'll keep you posted.
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Wednesday, midnight

We just went in to check on Gwen before heading to bed and found a 104.5 degree fever. Thankfully we do not have to rush to the hospital, since her central line is gone, and also her platelets are good enough that she can have Motrin. She has not been feeling well since her clinic apt last week (could be the flu shot or just the cold that has been making the rounds in our house?) She has hardly eaten a thing the last couple of days, but she is drinking a lot. Please say a prayer that this is just a little virus and that she will be feeling better soon. Hope to give you all a better update in the morning.
Our friend Mary Grace needs your prayers too--there is a suspicious spot on her lung that could be "something" or "nothing." There are indications in her lab work that show it is probably not tumor, but still, her parents will be stressing out for the next thirty days until they re-scan. Anna and I just saw Mary Grace at family camp with Camp Sunshine last weekend, and she was so cute playing with the worms at the fishing dock. As a matter of fact, Anna caught a fish and Gracie kissed it before it went back into the water (meanwhile Anna is trying to stay as far away from the fish as possible while still posing proudly for the camera--see photos).
Also please remember Catie who is going through radiation.
Thanks for checking in on us and thanks even more for your prayers for Gwen and for all of us in "cancer world."

Tuesday, September 27, 2005 11:31 AM CDT

Wednesday, 4:30 pm

CLEAR CT SCAN!!!!!!!

Gwen did GREAT with her long day of apts today. She was so brave for her IV and drank her contrast as fast as I would let her. She woke up extra cheerful from her "sleepy medicine" and was so patient for all the waiting in between appointments. At the end of his visit, Dr. Crosswell held out his hand for Gwen to give him a high five, and to his delight got a big hug instead! So, today gets an A plus as far as hospital days go! Thank you SO much for all your prayers!

________________________________________


I have to say that one of the best parts of being a parent is getting to experience things through your kids’ eyes. Events that would normally make us shrug our shoulders or roll our eyes suddenly become a source of major excitement. Case in point: the State Fair!!! Anna has been begging us to go to the fair for MONTHS. Her wish finally came true last weekend as we all rolled into the North Georgia State Fair. It was Gwen’s first time, and it did not disappoint! The best dollar I ever spent in my life was for the little Dixie cup of pellet food to feed the animals in the petting zoo. Gwen was not afraid of the animals at all (unlike big sister who would not get too close) and it was so fun to hear her squealing with delight whenever they would lick her. (P.S. you know we practically bathed her in Purrell after that activity!) It was a great day.
Yesterday we stopped by Egleston to visit our friends in AFLAC and also Day Surgery. It was great to see them, especially Dr. Haight, Nurses Liz and Deb (New NP, Congratulations!), and Mr. Mike! We missed those who weren’t there yesterday, but we’ll be back again! Tomorrow we’ll get to see everybody at Scottish Rite as Gwen has her CT and clinic apts. I’ve been really nervous the last couple of weeks and can’t wait to get tomorrow over with. Please pray for Gwen that she will have a good morning (no food or drink until afternoon) and that things will go smoothly with IV’s, drinking contrast, and sedation, and of course most of all that she will have a CLEAR scan. Also she has been having some issues with vomiting today (due to the Accutane?) and I am hoping that we can resolve that.
Thanks for all your thoughts and prayers—we hope to get back to you with great news tomorrow evening!

Thursday, September 22, 2005 7:47 AM CDT

OK, I realize I have become slightly derelict in updating this site! We are still here! Did any of you catch Fox 5 News at 6:00 last night? There was a short segment featuring Gwen and her good friend Jack playing at the park. Like Jen said, it was a little unnerving to talk with the reporters about the devastating effects of childhood cancer, when in our day to day lives we try so hard to remain positive. But any chance we get to raise awareness of the need for funding research, we have to take. By the way, Jack has important scans today, and is also dealing with the news of profound hearing loss that will require hearing aids (not covered by insurance!) so please keep him and his family in your prayers.
Speaking of scans, Gwen has hers scheduled for next Wednesday the 28th. We are anxious to see a nice, clear scan with nothing suspicious at all (which we have never seen yet). September 22, 2004, was the day Gwen was diagnosed, so today is the official one year anniversary. I’ll never forget nurse Anne who had to tell me that we were on the cancer floor. Although I had heard the doctor say “tumor” and “Neuroblastoma” (Hello, “OMA” means cancer, which I knew), in my mind I had attached the word “benign” to “tumor” and I was sure all she needed was surgery to remove it. I didn’t even register the “oma” part. When it started to sink in, how serious this was, I felt like I myself was sinking. Thinking about it again makes me physically feel shaky and sick. I can’t believe that we are now on the other side of the whole ordeal of chemotherapy, surgeries, transplants, and radiation. Only four rounds of Accutane (lovingly renamed “craputane” by Chandler’s mom) to go.
What is amazing to me is how Gwen has not changed through all of this. She is the same spunky, cheerful and loving little girl she was before cancer turned our lives upside down. If anything, she is even more nurturing and sweet. I can’t tell you how blessed we feel to have her in our lives.

Tuesday, September 13, 2005 12:49 AM CDT

Saturday was an eventful day for us. We had a friend in from out of town, and he and Ben took the girls up to Ellijay for apple picking with Camp Sunshine. They had a blast picking apples from the trees, petting lots of cute farm animals, and scarfing down apple donuts.



Meanwhile, I got to go downtown for the CureSearch luncheon honoring the moms of kids with cancer. There was also a silent auction which I hope raised a boatload of money for CureSearch. It was such a special occasion, seeing so many good friends (and all of them looking so fancy :) The highlight for me was hearing Liz Scott speak about her daughter Alex, of Alex’s Lemonade Stand . It was very emotional and inspiring to hear about her struggles and triumphs.

We finished round two of Accutane and we are so glad for the two week break so Gwen’s skin can heal up. We plan on spending a lot of time outside—it has been so pretty here in Atlanta.

Thursday, September 8, 2005 4:15 PM CDT

Gwen's guardian angel nurse Norah came to visit on Tuesday. Gwen ran right up to her and gave her a big hug and pretty much wanted to sit on her lap the whole visit.



It was great to see her, especially in a setting outside the hospital!

Wednesday we had our first doctor appointment in over a month!!! Let me tell you, life is great without tubbies, until that moment when your child needs a blood draw. Poor Gwen! She had to be stuck three times, and even then they only got half of the ten (!) cc’s of blood that they wanted. But her counts were good, slowly inching up towards the normal range. Her ANC is still around 1000, which means that her immune system is still pretty weak, but the good news is she actually has one! We are scheduled for a CT scan in three weeks (Wednesday the 28th). She has never had a great scan that shows absolutely nothing that could possibly be tumor, so start those prayers going for a clean and clear scan! We are not bothering with the MIBG (nuclear medicine scan that is usually extra sensitive to Neuroblastoma) because her tumor has never been picked up well by that scan.

It’s hard to imagine anything ugly showing up on those scans, given how well Gwen is doing. I caught her splashing in the tub tonight (meanwhile singing “I’m not splashing!”) and had to get this picture (P.S. thanks Jen for letting me know how to insert these!)



Happy splashing to all of you!

Monday, September 5, 2005 12:37 AM CDT

One year ago, the Saturday of Labor Day weekend, we noticed that Gwen was having trouble walking. She kept stumbling and falling. We thought maybe she had an ear infection that was affecting her balance. By Monday she couldn’t walk. We feared an orthopedic disease that had affected two of Ben’s siblings. Two weeks later we got the terrible diagnosis: Neuroblastoma. She had emergency surgery to relieve the compression in her spine. By then she could not even crawl and was losing function by the hour. The top left photo was taken just before diagnosis; then her surgery; then before we knew it we had to buzz her hair because it was falling out everywhere. It is unbelievable to me everything that Gwen has gone through over the past year, and to her, it’s just life!
We could not be more grateful to have her still with us, healthy, happy, and causing trouble like any other regular two-year-old! Thank you for being with us through it all.

Saturday, August 27, 2005 9:43 PM CDT

Yikes, has another week really gone by? I have (mostly) unpacked from our trip, but we have really been pretty lazy the last few days. It has been weeks (weeks!!!) since our last doctor apt, and our next one isn’t until September 8th. I don't quite know what to do with myself! Gwen starts her Accutane back up on Monday, which I am not looking forward to. But we’ve had a nice break from it and her skin had a chance to heal up. Now it’s back to pill-crunching time.
Anna is really enjoying herself in Kindergarten. Gwen loves to drop her off and wave goodbye, but then as soon as we drive off: “I want Anna now!” I guess she’s decided that “mommy time” is not as much fun as “sister time,” which of course it’s not!
Tonight we went to a friend’s birthday party at Chuck E. Cheese. It was Gwen’s first time going since her diagnosis! She had a grand old time. On the way home, she was crying for Anna’s balloon because she wanted to hold TWO balloons. Anna, exasperated, told her, “OK fine Gwen, your wildest dream is coming true” and handed over her balloon. She acts put out, but you can tell she secretly delights in cheering up her sister ;)
Thanks for checking in on us, even though I have been rather lame at updating lately! We are still here and we still appreciate all your thoughts and prayers.

Monday, August 22, 2005 8:55 PM CDT

We just returned from my family reunion up in Deep Creek, MD. We had a wonderful time. If I ever regain the IQ points I seem to have lost throughout the course of this long day of traveling with two small children, I’ll share some stories from our trip. Until then, enjoy the pictures!

Friday, August 12, 2005 9:42 PM CDT

We have been busy this week with Anna starting Kindergarten. She is so cute going off to school in the morning with her backpack that’s as big as she is! She is loving it. Gwen seems to be enjoying the extra mommy time, but she is definitely ready for big sister when she comes home. It’s cute because I go in to get her up from her nap when it’s time to pick up Anna, and she practically flies out of her crib she’s so excited! And by the way, I use the term “nap” pretty loosely. The last few days I go in there to find all her bedding on the floor and her socks on her hands (“Look! I have puppet muffins! They’re so yummy!”) Oh well, as long as I get MY quiet time I don’t really care whether she sleeps or entertains herself with her socks!
On the medical front, our first round of Accutane is almost done (we’re two weeks on, two weeks off). It will be nice to take a break from the peeling, dry skin. She hates me globbing on creams and lotion all day. But she is still crunching those pills with gusto! So gross! We have been lucky that she hasn’t developed mouth sores from the acid in the medicine.
Next week we are going to see my family up in Maryland, which will be great. Everyone is going to love seeing Gwen with her cute head of hair (“Mine hair is growing!” she tells us). Love to all of you and thanks for checking in!

Sunday, August 7, 2005 1:26 PM CDT

Yesterday we attended the beautiful service celebrating Ethan’s life. Chris, Julie, Ryan and Hailey have so much faith and they are one the strongest families I have ever met. But no matter how much faith you have, how much you know Ethan is happy, safe, and now whole from his disease, and no matter how much you know you will see him again, you still miss him.
When Gwen was in the hospital all those months, there were several occasions when family members stayed with Gwen overnight so Ben and I could go home and spend some time together with Anna. It was always so hard to be home with Gwen’s room empty. I keep thinking about Ethan’s empty room, and how the Alains now have to figure out a way to start living life again without their son. They will, though, because they do have that kind of faith. At the end of the service there was a balloon ceremony, which was really neat. We all went outside and released hundreds of purple (“because purple was Ethan’s color”) balloons up into the sky. It was a sweet farewell, and I’m sure Ethan enjoyed the show from up in heaven.

Wednesday, August 3, 2005 9:20 AM CDT

Our hearts are breaking with the news we heard this morning of Ethan's passing. All our love and prayers to our friends the Alains. We will miss you, Ethan.

Monday, August 1, 2005 10:16 PM CDT

Things are going really well! The family went to the Braves game with the group from Curesearch last Thursday. It was pretty hot and sweaty outside but the girls had a good time looking at the big green field.

Gwen and Anna are having a great time together this summer. The two of them have become quite a team over the last couple of months that Gwen has been feeling strong. Gwen is going to miss Anna when she goes back to school this month.

We started accutane today. We have been worried about how we were going to train Gwen to swallow the gel-caps - but she found a way around that. This morning, Taba put the gel-cap in her mouth - Gwen immediatly crunched it between her teeth, sucked out out the medicine and then spit out the empty gel-cap shell. "That was yummy medicine, mamma!" She did the same thing for her dose tonight. Gwen has yet to meet a medicine that she didn't like.

Wednesday, July 27, 2005 8:45 AM CDT

Just wanted to post this photo from yesterday--anything to cool off, huh?

P.S. 2:00 p.m.
We stopped by Scottish Rite today to visit Ethan. He will be going home today but his fever is still present and he is not doing well. Please visit him at ga/ethan and keep him and his family in your prayers.

Monday, July 25, 2005 1:53 PM CDT

Today was Gwen’s first day in the pool since she was diagnosed over ten months ago!!! It was wonderful. She has NO FEAR of the water, and just about gave me several heart attacks. However, it was worth it for the look of pure glee on her face. She would jump right off the edge of the pool (whether I was ready for her or not!) and when she’d gulp water she’d sputter for a second, then say “That was a big swim!” Meanwhile I’m trying to keep an eye on Anna, who can’t quite swim yet and fortunately for me is more cautious than her sister. It was an exhausting but very satisfying three hours! Getting to swim this week is my only consolation for our cancelled Lighthouse retreat at the beach. I can’t tell you how disappointed we are about missing it (due to damage from Hurricane Dennis). We had been looking forward to it for months, especially because so many of our cancer friends were going to be there that week. Sigh. I guess there’s always next summer!

Monday, July 18, 2005 2:41 PM CDT

Happy Birthday Ben!!!

Today the girls and I went to surprise Daddy at work with cupcakes. They each had picked out a balloon for him and made cards. We also gave him a gift card to the hobby shop to pick out a new model airplane. It’s become a tradition for the girls to give Ben a gift card hiding in something silly—in this case a Hello Kitty wallet. Then of course he makes a big deal about how much he loves the wallet while Anna is practically wetting her pants laughing and telling him to OPEN IT!!! Gwen is starting to get into the act, too. She is a giggle box like Anna and loves any excuse to laugh. All morning she couldn’t wait to “Go see Daddy at work and eat PUPCAKES!”

Tuesday, July 12, 2005 7:47 PM CDT

You all know that Gwen has become very good friends with her tubies. She hugs them, kisses them, and feeds them macaroni and cheese. Today as we rode home from Day surgery, she hugged them to her chest and said, “I love mine tubies!” But this time, she was clutching them from outside her shirt! Dr. Pitt removed her central line today, as well as her G-tube and also, a small mole on her leg that had darkened over the last few months. When we asked him to keep the tubes for us, I joked with him that they have sentimental value, which weirdly enough, they really do! It is a huge step for Gwen to get those tubes out. They have been a lifesaver, literally, over the last ten months, and we have been so grateful for them. Of course, they have also been a source of infection and worry, and a very visible sign that this is not a well child. We are now so much closer to being able to say that Gwen *had* cancer. She is still in treatment (with Accutane beginning August 1st) but she has come SO FAR. Thanks to all of you for your love and prayers for our little girl. It has meant the world to us.

Friday, July 8, 2005 1:30 PM CDT

Boy has this been a long week. The clinic called us Tuesday to let us know that Gwen’s blood cultures from Sunday’s ER trip were positive, so we needed to come in for repeat labs (translation, “hey, why don’t you come on over and hang out at the clinic for two hours!”) They called again yesterday, saying that Tuesday’s cultures were also positive, but since it was almost 4:00 p.m., we needed to go to the ER (translation, “how would like to waste your entire afternoon and evening?”) So off we headed to the ER for more labs and IV antibiotics. I had to argue with a @#tech who insisted Gwen needed a peripheral IV (“it’s on the orders!!!”) He finally went and got a doctor when I refused to let him stick her. Uh duh, she has a tube hanging right outside of her chest!

So we are now on daily blood draws and IV antibiotics until her infection clears up. Fortunately starting today we can do all that from home. Hooray for home health agencies! By the way, Gwen has been absolutely fine since Sunday—no fevers or anything. She and Anna are so excited for the Camp Sunshine activity tomorrow at the Center for Puppetry Arts. We should see lots of our friends there.

Speaking of our friends, please pray especially for Ethan (ga/ethan) who is dealing with relapse, Kylie (ga/kyliescorner) heading up to NY for her next round of antibody treatments, and Catie (ga/catie), who is recovering from brain surgery. Catie has some stubborn areas of cancer in her brain that are going to require more aggressive treatment than she has been getting (including possibly stem cell transplant like Gwen had). Please pray for her parents as they make these difficult decisions, and for Catie to recover quickly from surgery.

Monday, July 4, 2005 9:57 PM CDT

We had a great 4th of July. Gwen seems to be feeling fine and she has not had any signs of fever today. The family went to the Independence Day Parade here in Marietta this morning. Anna and Gwen waved their flags and enjoyed watching all of the interesting floats and people march by.

After a great BBQ with some good friends this afternoon, we were able to stop by the Alain's home to say hi to Gwen's transplant buddy Ethan. Ethan wowed the socks off of us by showing us his extensive race car collection and his room. The best part was hearing him yell "start your engines!" before racing his cars.

Sunday, July 3, 2005 4:11 PM CDT

Gwen woke up with a fever this morning, so while Anna and I went to church, Ben took her to the ER. They gave her a dose of IV antibiotics and let her come home. She has been sleeping the last few hours, which hopefully will help her feel better…

Friday, July 1, 2005 1:29 PM CDT

It’s been hard to know what to say the last few days because we’ve been so devastated by the news of Ethan’s (ga/ethan) relapse. At this point they are looking at options that will keep him comfortable and prolong his life some. Unless God intervenes with a miracle, we are going to lose another child to this horrible disease. Please pray for Ethan and his parents, Chris and Julie, as well as his siblings Ryan and Hayley.
We continue to do well. Gwen had an appointment with her surgeon, Dr. Pitt, yesterday and he took a look at the hernia in her side. He said it’s not actually a hernia; he couldn’t feel a defect there. It seems to be a muscle weakness that when there’s pressure in her lungs (like if she laughs or cries) the muscle can’t tighten, and it juts out. This may be due to some nerve damage either from the tumor itself or from the surgery on her spine. Anyway, he didn’t think we should do anything about it. Ben says it will be a really cool party trick for her. The great news is that we have a date set for surgery to remove her central line and G-tube! Tuesday, July 12th is the big day. It will be a real milestone.
This morning we got to have breakfast with CURE Childhood Cancer. They won the WSB radio/AJC Jobs Breakfast Break for being an office “deserving of a break.” Our friends the Murphys (Jacob’s family) were also there. It was fun to see them, and also the great people from CURE. They work so hard on behalf of Gwen and the millions of other kids with cancer. If you want to be inspired, check out their website at www.curechildhoodcancer.org (it’s also on the links at the bottom of this page).

Tuesday, June 28, 2005 8:16 PM CDT

I just read the devastating news that our good friend Ethan Alain (ga/ethan) has relapsed. He was next door to Gwen in transplant and we became very close to him and his parents, Chris and Julie. Please remember Ethan and his family in your prayers.
We are doing fine; Anna is feeling better and Gwen is gaining back her energy. For our family night on Monday we went to the park to fly a kite. There was pretty much no breeze, so we had to run to get it to even go in the air, but the girls loved it anyway.

Friday, June 24, 2005 9:56 PM CDT

NEW PHOTOS 6/24

WE DID IT!!! Today was the LAST DAY OF RADIATION! Gwen did amazingly well throughout the whole experience. We are so proud of her.
We didn’t do much to celebrate yet, however, because Anna has been sick with some kind of bug. She is on the mend, and I hope Gwen doesn’t catch it. It was kind of weird to take Anna’s temp the other night. As the thermometer climbed past the 101 mark, my stomach was sinking. Then I remembered, oh yeah, she is a NORMAL kid who doesn’t have to go to the ER for a measly fever. Boy it will be great to reach that day with Gwen. And it will be soon! She will get her tubes out in couple of weeks and her counts should start to come up again now that she’s through with radiation. The next step is to start her on the Accutane. We have a few weeks until that begins. Anyone with any ideas on how to teach a two-year-old to swallow pills, start posting your advice!

Sunday, June 19, 2005 7:20 PM CDT

Happy Father’s Day to all you dads!
We are looking forward to our LAST WEEK of radiation. Phew, we will be glad to be done with it. As well as everything has gone, it’s starting to wear Gwen (and me) out. Yesterday was our friend Jack’s 4th birthday party. He is newly off-treatment (same diagnosis and protocol as Gwen) and he looks great. It was a fun party and the girls both had a blast. Spiderman came and did magic tricks, there was a moon bounce, and oh, yeah, there was a bucket full of ice and water bottles that Gwen played with for an hour. She was standing in the one and only muddy spot in the whole yard, stomping her feet, fishing water bottles out of the bucket and throwing them back in for a big splash. Also occasionally picking out a piece of ice to munch on. She was rather filthy and wet when we left, but she had so much fun!
Gwen phrases of the day: “No thanks, I’m okay!” (This would be in response to me asking her to do something like put her socks away) and “Put the lid on, mom, to the highest heights!” (From Mary Poppins “Let’s go fly a kite, up to the highest heights!”) Gwen likes to add song phrases to any part of the conversation, just to spice things up, I guess. She is hilarious.

Wednesday, June 15, 2005 9:12 PM CDT

Halfway through radiation, hooray! Gwen is doing great with it. She loves to go see Mr. Mike who takes her for the choo-choo train (golf cart) ride through the tunnel from Egleston to Emory. She also likes her “sleepy mask” and always looks forward to her red “posickie” when she’s all done. She is slowing down just a bit (getting tired and cranky a little more often) but when she’s feeling good she’s running around all over the place, usually on tiptoe. Anna is having fun with her ballet classes which started this week. So sorry to disappoint my old college roommates, but I had no luck with getting Ben to do her bun. He claims I am a bad teacher. Oh well, we just get her ballet teacher to do it. Gwen loves to “Go get Anna!! See ballet girls!!” I wish you all could hear her sweet little voice. She always tells me, “Hello Mama, my name is Gennie!”

Saturday, June 11, 2005 9:13 PM CDT

NEW PHOTOS POSTED 6/11

We finally made it through the week and have had a fun Saturday at home. Ben played with the girls most of the day while I got some cleaning done. Anna and Gwen are both such Daddy’s Girls, they really loved getting him all to their selves for a day.
Gwen continues to do well with the radiation. No ill effects at all!
Anna starts Ballet classes next week which I am at least as excited about as she is. We had fun practicing doing her bun the other day. I was trying to teach Ben how to do it because I’ll be gone in the mornings with Gwen. Umm, we’ll see how that goes :)
Thank you so much for continuing to keep Gwen in your prayers; we really have felt so blessed. Love to you all…

Wednesday, June 8, 2005 9:08 PM CDT

Today was a long crazy day with day two of radiation in the morning, and a clinic visit at Scottish Rite in the afternoon. Fortunately there was time for a nap in between! Gwen has been doing great with the radiation. The worst part is that she has to go under anesthesia so it makes for a long morning. Today she woke up very grumpy from the sedation (cried for 45 minutes to “GO HOMIE!!!” until they finally let us out of there!) Then there was the two hour apt at the clinic and the rush hour ride home…ugh. I can’t wait for the weekend so we can get a break.
On a more cheerful note, here is a cute quote from Gwen: At church on Sunday she was sitting on my lap and called over to Ben, “Hey Dad, come here! Let’s go fly a kite!” She says that all the time because she loves that song from Mary Poppins. We love our little munchkin. She is looking cute with her new eyelashes, eyebrows and peach fuzz hair. Ben and I are both depressed about saying goodbye to her bald head, though. Maybe that seems weird, but we will really miss it!

Monday, June 6, 2005 7:36 AM CDT

We have been enjoying a fun visit from Grandma Noelle this week. On Saturday we went down to Callaway Gardens. The girls were SO excited to see the butterflies, and then we also saw the FSU Flying High Circus! It was great, and so fun to see the girls’ faces as they watched (Gwen: “LOOK! They’re SWINGING!”)
Tomorrow we begin radiation. We are nervous but excited to get yet another treatment behind us. This one should be a cinch compared to what Gwen has already been through, but still… please send us lots of prayers!

Wednesday, June 1, 2005 6:55 AM CDT

We had a great Memorial Day weekend with a fun visit from my brother Joel and his wife Kristine. On Monday we finally made it to the Coke museum after having lived in Atlanta for 3 ½ years! It was fun. Gwen and Anna both loved it. Gwen kept saying, “look at the big COKE, Mama!”
My mom arrived yesterday and we are looking forward to having her around for the next ten days. Gwen has her radiation simulation on Thursday morning. Please pray that everything will go well and they’ll map out the radiation in the most effective and safe way possible.
Here’s some good news for you: Gwen’s eyelashes are growing in, as well as her eyebrows, and her hair won’t be far behind!

Thursday, May 26, 2005 2:51 PM CDT

The last two days have been long appointment days, but everything is going well. Gwen did great for her scans and it was fun to see all our friends in Radiology and Nuclear Medicine at Scottish Rite. We also stopped by to visit our nurses in 3North. Yesterday was her apt. with Dr. Marcus at Emory. We had to wait a long time, and Gwen kept popping out into the hallway to call out in her sing-songy voice, “Doctor! Where are you!?” My thoughts exactly! But Dr. Marcus was really nice and we also met Dr. Nadia, who will be taking care of Gwen the next few weeks while Dr. Marcus is out of town. They had a chance to peek at Gwen’s scans, although the report isn’t back yet, and they said they looked really good. Dr. Marcus said he “couldn’t see anything that was easily recognizable as tumor!” So that is great news. We know there is probably still disease there (or else why would we be putting her through radiation?) but what a relief to see such a great improvement from before transplant!
We are hoping to get in next week for the simulation (when they’ll map out where the radiation will be) and then begin the following week for the real thing.

Monday, May 23, 2005 6:49 AM CDT

Thankfully no more ER trips to report! Gwen is doing just fine and we even took her to church on Sunday. It was so nice to be there all together as a family. After the choir sang, Gwen yelled out, “Great singing!” She has been very cheerful and happy and has fun bossing us around all day.
Gwen has a CT and a bone scan tomorrow, so please send lots of prayers for CLEAR SCANS!!! On Wednesday she meets with Dr. Marcus, the pediatric radiation oncologist at Emory. We are looking forward to starting her radiation soon so that we can put that behind us too! Lots of love to you all and thanks as always for your prayers!

Thursday, May 19, 2005 8:08 AM CDT

ANOTHER crazy night in the ER... The ER doc called us at 10:00 p.m. last night to tell us we needed to come in--Gwen's central line cultures from the night before grew back positive for what might be Staph. So even though she was doing fine (G-tube site looks much better, and no fever) we had to wake her up for another four-hour marathon at the ER. They took more blood from her lines and gave her another dose of IV antibiotics. Her counts were a lot lower last night than they were Tuesday (WBC was down to 2.7) so I'm not sure what that's all about. I'm supposed to call the clinic today and I'm hoping they won't ask me to bring her in, but we'll see...

Afternoon update: Phew, no clinic visit today! Gwen is doing fine and is catching up on the sleep she missed last night :)

Tuesday, May 17, 2005 5:57 PM CDT

As I write this, Ben is on his way to the emergency room with Gwen. The good news is, she does not have a fever, so hopefully she will not be admitted. They need to check her g-tube site, which has been red the last couple of days. This afternoon it developed some kind of abscess, which burst and started oozing some nasty looking junk. Her counts last week were very low, so they’ll need to see where they’re at tonight. We are hoping and praying that her counts have come up enough that they’ll just send her home with a prescription. I’ll update later tonight to let you know…

11:00 p.m. update:
Ben and Gwennie just came in from the hospital--everything went as we hoped; counts are WAY up (last Wednesday WBC 1.17, tonight 7.88!!!) They gave her an IV antibiotic and sent her home with a prescription for Keflex. Of course this all took only about 4 hours, ugh. But we sure are grateful and relieved not to have had to be admitted. Good night and sweet dreams to all :)

Saturday, May 14, 2005 10:49 AM CDT

We are relieved to have heard some good news from Chandler's biopsy. His site is at ga/chandlerbooth

Well, so much for the update I promised for Wednesday—I’m sorry to keep you all in suspense! Our appointment with Dr. Rapkin went really well. He spent over an hour with us, answering a lot of questions and going over her pre-transplant scans with us, which we hadn’t had a chance to see. We have new scans coming up on Tuesday, May 24th. Then she has an appointment with Dr. Marcus, the radiation oncologist at Emory, on the 31st. She will begin her radiation soon after that. She’ll go daily (M-F) for three weeks.
We’ve had a lot of people ask if Gwen is in remission. Unfortunately with Neuroblastoma that’s not a very simple question to answer. These tumors are so tricky. Gwen’s scans have always been ambiguous—her MIBG scans, which are very sensitive to Neuroblastoma, were not positive for her main tumor even at diagnosis, which means that her tumor is “MIBG negative.” This is not good because now we can’t rely on this test to show much anymore. We’ll be mostly relying on CT scans. She’ll also have a bone scan again to see how the lesions on her ribs (where her tumor eroded her bone) are healing. Those areas could light up on bone scans for a few years, and it could simply mean that they are still healing. Or active tumor areas could not show up on scans at all. So really we won’t know for years whether she has beaten this thing or not. Either she will relapse or she won’t. What we need to do is simply decide that she is healed and live our lives as if she will be around forever. Like I’ve talked about before, this is a lot harder to do than living “as if each day is your last.” Please pray for us to have the faith we need to truly move on with our lives.

Tuesday, May 10, 2005 1:07 PM CDT

Since we’ve had to remove the links to other caringbridge pages, some of you have asked me for Chandler’s website. It’s the same as Gwen’s, just substitute chandlerbooth for gwenmason (but you didn’t hear it from me…) All I’ve heard so far is that his surgery went very well and he is back home. They know it is tumor but are waiting for the pathology report to find out if it is active, or if it’s just mature benign cells. I don’t have to tell you which result to pray for!!!

Gwen is doing great. We are looking forward to visiting with Dr. Rapkin tomorrow. I am dying to know what her counts are—we have never gone more than a week without checking them!
We are enjoying a nice visit from Ben’s oldest brother Jim and his wife Jane. They have been going to town fixing things for us and are painting the girls’ rooms today! (By the way, I called to ask if the painting would be okay for Gwen, and Dr. Haight said, “sure, as long as they come to my house next” :)
Mothers Day was kind of a non-event for me because I spent the whole day sick in bed. I think my body has been waiting eight months for a break when it’s allowed to get sick, and decided now’s the time. I’m feeling a good deal better today, but please say a little prayer that I won’t pass this on to Gwen. We do NOT want her getting sick!
I’ll update tomorrow to let you know about how our appointment went. We’re hoping to see Ethan and Jack who have appointments tomorrow too!

Thursday, May 5, 2005 11:00 PM CDT

Prayers are needed for Chandler!!! He is one of our Neuroblastoma friends, who has been off treatment for several months, but is having a biopsy of his skull Friday morning. There is concern that there may still be active cancer there. Please pray that the biopsy will be negative, showing only benign, mature cells.

As for Gwen, she is doing great. Eating bowl after bowl of mac & cheese, just like last time. (I’ll spare you the details on her diapers—although I will say she has asked to sit on the potty a few times, but no luck yet.)
She has been her usual sweet self. Today Anna was resting on the couch, and Gwen came up to her, patted her and said, “Don’t worry Anna, I’ll take care of you!” Anna gave her a big smile and a hug.
Remember how she likes to take care of her tubes, including feeding them mac & cheese? Well, she has also decided that her tubes should watch TV with her. The other day she was sitting on the couch watching Dora, and she untucked her tubes, sat them on the pillow next to her and said, “there you go, watch Dora!” What a little nut. She is too funny.

Tuesday, May 3, 2005 6:12 PM CDT

Well, yesterday we were officially released from the BMT Team at Egleston and Gwen’s care has been transferred back to Dr. Rapkin at Scottish Rite. It is great news and we are thrilled to be going back to Dr. Rapkin, but it is sad to say goodbye to our great team at Egleston. We love those doctors and nurses like family. They treated Gwen with such tender care, and we will never forget them!
Next week (Wednesday the 11th) we have an appointment with Dr. Rapkin to go over what is coming next. We’re hoping to get some approximate dates on her radiation.
For now we have just been enjoying being home. I can’t believe that we are done living in the hospital! Before we know it, Gwen will be getting her tubes out and growing hair! I am really trying to make the shift from pure survival mode, to SURVIVOR mode. It means not just getting through each day, but thinking of the future without fearing it, and that is hard. I almost had a panic attack the other day while buying a size 3T dress that was on sale for Gwen next summer. It’s like you don’t want to jinx anything by thinking too far ahead. So that’s tough, but compared to living life in the midst of the severe treatments Gwen’s been going through for the last eight months, I guess I’ll take shopping for next year!

Saturday, April 30, 2005 3:09 PM CDT

Sorry for the delay in updates… Really there has not been too much going on, which is great! Gwen is doing better every day; she has stopped throwing up and is eating more. The only real problem we have left is the diarrhea, which wakes her (and us!) up every two hours during the night. So that is no fun, but hopefully it will slow down soon.
I’m feeling a little foggy right now, so sorry this is a not-so-interesting update. Just wanted y’all to know we are still hanging in there!

Monday, April 25, 2005 7:04 PM CDT

DAY PLUS 14

Gwen has been feeling pretty good. She's been cheerful and fairly energetic, but she gets worn out easily. Today was a clinic day, so we had to get up bright and early. We were about a third of the way there when she started throwing up. ARGH! But she just sat there cool as a cucumber until we got there, when she said to me “Big mess! Mama clean it!” in her sad little voice. Fortunately I had thought to throw some extra clothes in the diaper bag before I left this morning (of course all I could find clean was pajamas, but it was better than going naked!) SO, that was a really pleasant way to start the morning. The good news is that her counts are great (WBC 9.51, HBG 12.7, platelets 18,000) so we can stop the Neupogen (which boosts her white count) and let her marrow start working on its own.
We got such a nice surprise from some of our church members tonight—they have wanted to do something for us and decided to plant flowers in our yard. Wow, it looks great and it will cheer us up every time we see them. I just hope we can keep them alive! (What’s the opposite of a green thumb? Um, that would be me!) Anyway, we appreciate it so much. Anna was so excited. “I’ve been WANTING flowers!”

Friday, April 22, 2005 3:08 PM CDT

DAY PLUS 11--HAPPY BIRTHDAY ANNA and WELCOME HOME GWEN!

We are HOME!!! As we were leaving the hospital, Gwen was crying because she wanted to go to the playroom! But you should have seen her face when we pulled up to the house. She was pleased as punch to be back home. Then Anna came home from school and she just lit up. They gave each other a big hug, and Anna asked right away if she could share her birthday presents with Gwen. The "birthday fairy" came to visit last night and decorated the house with pink curly ribbons and balloons (as a bonus, Gwen thinks the decorations are for her :)). Anna brought cupcakes to school and we'll have a cake after dinner with just our little family. So it's a good day. Please continue to keep Gwen in your prayers as she recovers--she is still having a lot of vomiting. Most of all, though, please pray that these two transplants will have done their jobs and erased all the cancer in Gwen's body. The next step is radiation, which will probably begin in a few weeks. But right now we just get to enjoy being home, and celebrate the LAST time we have to unpack the car from a hospital trip!!!

Thursday, April 21, 2005 7:49 PM CDT

DAY PLUS 10

Wow, we can't believe it is day +10 and Gwen is going home TOMORROW!!! She is doing great--although that's still relative to how she could be doing. She's had a lot of vomiting and diarrhea today, which is never fun. She also got platelets and red blood today because her counts were low. But her white count doubled again (as it should at this stage) to .9 so that is good news. She also got to be unhooked from her IV pole for a few hours, which is SO NICE when you have a two year old who is feeling good enough to want to run around. We just can't wait to come home tomorrow and for her to get to see Anna and "Gen's house." Being home is just the best medicine.

Wednesday, April 20, 2005 7:45 AM CDT

DAY PLUS 9

a.m. update:
I made an entry last night, but for some reason it didn't get updated on the website?? So here's what happened yesterday: Gwen's white count finally bumped up to .21 and hopefully from here on out it will keep increasing.
Gwen has been little miss sleeping beauty the past few days, and I really think it has helped her heal fast. The doctors and nurses are all amazed at how well she's doing. When I told the doctors yesterday that my goal is to get her home on day 12 (pretty much unheard of), they not only didn't laugh, they thought it was definitely possible. It will be up to her counts, so come on, little cells and do your jobs!!!

p.m. update:
Well, never mind about day 12, how about DAY 11??? Yes, it's true, they are planning on sending Gwen home on Friday. I think this will go on record as the earliest they have ever sent home a transplant kid. Amazing! We are so thrilled. Especially because Friday is Anna's birthday!
It's very late so I'll update more tomorrow... But I had to let y'all know the good news! All those prayers are working miracles around here!

Monday, April 18, 2005 10:30 PM CDT

DAY PLUS 7

Just a quick upadte tonight--Gwen had a great day today. She was much less grumpy, which was a relief. Her white count is still low at .10 but it will come up soon. She rested a lot this morning but then got up and was running around with the beach ball that the physical therapist brought her. She was supposed to be kicking it but all she wanted to do was carry it :)

Sunday, April 17, 2005 7:41 PM CDT

DAY PLUS 6

A day of ups and downs todays. Since Gwen has been afebrile (fancy for no fever) for the last few days, and has not grown any bacteria in her blood cultures, they are taking her off the vancomycin (one of her antibiotics). That's great because she's sensitive to it (even when premedicated with benedryl, it makes her itchy--without premed she turns into a tomato!) So that's one piece of good news. Another is that she has had even more energy for playing today--the only problem is that she is still feeling rotten. Energy feeling yucky = one cranky kid and two frustrated parents. She was throwing stuff in the playroom (including paint) and just generally acting crabby all day. I don't blame her, it just makes for a long day. Fortunately we had reinforcements arrive tonight (Aunt Sara is here from Salt Lake--she and Uncle Ralph crossed paths in the air as he returned home today). We are looking forward to spending some time with her. Gwen gave her a big hug when she saw her.
Anna is not liking Gwen being in the hospital. Yesterday I picked her up from her friend's house and she didn't want to leave. She said "I live here now!" and told me, "I'll never like you!" I tried to stay cheerful and told her, "no matter what you say to me I'll always love you!" but it made me sad. Later that day she just burst into tears for no apparent reason. She is just having a hard time with the family being separated. I really think we will be out of here in another week, Gwen is doing so well, but every day has just seemed so long. We have been so blessed in so many ways, but it's hard to stay positive all the time. Sometimes you just have to complain!

Saturday, April 16, 2005 6:46 PM CDT

DAY PLUS 5

Gwen is doing as well as we could possibly hope for day +5. She has had no fever for the last two days, and she has had some energy. She played quite a bit this afternoon and did two laps. Her voice is raspy but the mucositis seems to be improving, and her mouth sores aren't bad either. She has diarrhea and a yeast infection (three mega antibiotics, plus antifungal and antiviral and I can't even keep track of how many other medications--makes for some interesting diapers). But really, it is a miracle that she is doing so well. She even had a small white count this morning (.15!) and they started the Neupogen today which will help boost white cell production. Even her G-tube site looks okay. I'm almost afraid to say it for fear of jinxing anything, but I really think that she will only improve from here on out. Please continue praying for her, and for us too. We are so grateful for all your love and prayers and your support of our little family.

Friday, April 15, 2005 10:03 PM CDT

DAY PLUS 4

Gwen has been doing a little better today. We’ve kept her on the O2 monitor but she is fine since the scare yesterday morning. She did a couple of laps today and actually played in the playroom for a while. (The last couple of days, she has asked to go to the playroom but when we get there she just wants me to hold her while she looks out the window) Today we painted and she played with Chip and Mushroom :) Speaking of which, we got the nicest package delivered yesterday from some kind soul who thought Gwen would like some new play food! Thank you so much!!! It is amazing to me how people who don’t even know us have been so kind and generous.

Thursday, April 14, 2005 1:26 PM CDT

DAY PLUS 3

I'm sorry for not updating last night; I spent half an hour writing and then the computer froze up. I didn't have time to start over! The highlight of the day yesterday was picking Anna up from the airport (my sister-in-law Kristine flew down with her, then returned to D.C. today). We were so excited to see Anna and she was all hippity-hoppity, laughing and telling jokes. She had the best time up in D.C. with my parents, but she sure was happy to be back home. Ben took her to school this morning and she was mobbed by the kids in her class. They hadn't seen her for over a month--we kept Anna home in between transplants to protect Gwen from all the germy kids :) and they had all missed her.
Gwen is having a rough time of it. Yesterday she was really gagging and choking a lot on all that thick junk from the mucositis, and this morning we had a real crisis. Uncle Ralph had stayed with her last night so Ben and I could get Anna from the airport, and I had not arrived at the hospital yet. Gwen was gagging and throwing up for about 15 minutes, while Ralph and Nurse Norah pulled the strings of mucus from her mouth with tissues. She finally stopped and wanted to lay down. Ralph went to the other side of the room, but Norah for some reason had decided to do her charting in Gwen's room and stayed close to her. Suddenly Norah noticed something wasn't right, and tried to sit her up. Gwen was not responding and was turning blue. Within seconds the room was full of people giving her oxygen, suctioning out her airways, doing chest x-rays... Luckily she responded to the oxygen and suctioning and recovered quickly. But when I arrived a few minutes later to find her sleeping with an oxygen mask on, I about had a heart attack. I just felt sick that I hadn't been there. She's fine now and off the O2, but my heart hasn't slowed down much. We are so grateful that Norah was inspired to stay in the room with her, and that she knows Gwen so well that she could see so quickly when something was wrong. And to Ralph for staying calm and helping Gwennie get through all the excitement. We are truly being blessed and watched over.
P.S. I forgot to mention that Gwen has developed a fever today, too. So, a pretty crummy day for Miss Gwen. Luckily she is able to sleep pretty soundly, so her little body is getting lots of rest!

Tuesday, April 12, 2005 5:15 PM CDT

NEW PHOTOS FROM TRANSPLANT DAY

DAY PLUS 1

Right on schedule, Gwen is feeling terrible. She was okay this morning, especially after they started her PCA pump, and she walked a few laps and played in the playroom for a while. But then she took a three hour nap and woke up quite miserable. She just wanted me to lay down next to her and read the same book over and over for an hour and a half. She'd close her eyes and drift off, but if I tried to stop, or change books, she'd fall apart and start crying pitifully, "read again!" Thankfully the book was not "Good Dog Carl," which she made us read fifty million times last transplant. (In case your dying to know, this time it's "Happy Baby Colors")
It is heartbreaking to see her so sick and unhappy, and knowing it's going to get a lot worse... But we will get through it, thanks in no small part to everyone's prayers and encouragement. It is also comforting to know we are being so well taken care of by our doctors and nurses. They have been right on top of everything and are doing their best to get Gwen through this with a minimum of discomfort (i.e. they are very liberal with the morphine!)

Monday, April 11, 2005 3:39 PM CDT

DAY 0!!! TRANSPLANT DAY!

Yes, today was the big day! The infusion of Gwen's new stem cells went very well. As she did last time, she had a good bit of gagging and vomiting, but no other complications.
She is starting to feel a lot worse. They've started her on a some morphine for the pain, and she'll probably get her PCA pump tomorrow (where we can give her extra doses of morphine by pushing a button). Her TPN (IV nutrition) is starting tonight. She was only able to do one lap today, but that's partly because she was confined to her bed for four hours while they monitered her heart, etc, following the transplant. By the time we got out to walk she was begging to go to night night. So she's already in bed for the night at 5:00 p.m.
I talked to Anna today and she was asking me when Gwen would get her hair back. I told her that maybe by Christmas time. She said, "Santa will bring her some hair?" We have sure missed having Anna around, she really keeps us laughing. But she has been having the time of her life on her big adventure up in D.C. She'll be ready to come home Wednesday, though. It's a long time to be away from home for a little kid.
Please keep all of us, and especially Gwen, in your prayers right now as she begins the descent into the worst part of transplant.

Sunday, April 10, 2005 9:44 PM CDT

DAY -1

As expected, Gwen is slowing down quite a bit. She was able to do all her laps today, but most of the afternoon she just wanted to sit on Ben's lap. She was watching Charlotte's Web and asked him to make her a play-do spider (he had made her a play-do dog yesterday that she hugged and played with for a long time). She has such a sweet and nurturing personality. To her, anything little is a baby for her to love. Out of the whole BMT playroom, her favorite toys are a two play food items: a mushroom and a chip. They were missing for the first few days, and she kept asking, "where's mushroom? where's chip?" She totally remembered them from last time. When they finally showed back up in the playroom, she was so happy, you'd think she had found her two long-lost best friends!

Saturday, April 9, 2005 6:44 PM CDT

Day -2

Gwen contines to hang in there. She had a pretty good day today. No more chemo - today was just a "rest" day. Again, the only thing she will eat is macaroni and cheese. After eating half of a bowl, she threw it all up - then immediately asked to "try again, baby bites". So we got some more and she had ate another bowl and a half. This time it stayed down.

Uncle Ralph arrived today to help out and he brought with him our Team Gwen wristbands. Taba and I love them! We feel like we are the last people in the world to get one.

Friday, April 8, 2005 6:42 PM CDT

DAY -3

Today was Gwen's LAST DAY OF CHEMO!!! They unhooked her at noon today. Pretty exciting! Gwen's doing well today--even a little better than yesterday! I made her some macaroni & cheese from the box (she won't the cafeteria's) and she mowed through two bowls of it!
Thank you to Gwen's cousins Ally and Sam for being the official Team Gwen wristband distributors at Bonneville Elementary in Salt Lake City! To all you kids wearing Gwen's wristbands, we are so proud to have you on our team! It was really nice to get messages on our guestbook from so many of you!

Thursday, April 7, 2005 9:19 PM CDT

DAY -4

Gwen is still hanging in there, but she's starting to slow down some. She has pretty much stopped eating (I was reading back over the journals from last transplant, and she stopped eating on day -4 last time, too). So I guess she's right on schedule. She has still been cheerful, though, and was able to get all her laps in today.
She did get a blood transfusion this morning because her hemoglobin was low. But other than that, nothing new yet. Tomorrow morning her chemo will be disconnected (FOR THE LAST TIME EVER!!!) and I'm guessing they'll start IV nutrtion tomorrow or the next day. (Or if not the next day, then FOR SURE the day after that! ;) That one was for you, Sarah!) Thanks everyone for your prayers; please keep them coming because we'll need them more than ever these next few weeks!

Wednesday, April 6, 2005 6:02 PM CDT

DAY -5

One more day down, and Gwen's still eating and feeling good! She pretty much runs her laps, with Mom and IV pole flying behind her! Anna got to go to the zoo up in D.C. today and saw the baby cheetas. I was talking to her on the phone about it and Gwen got all excited and asked for some Cheetos :)
Our friend Ethan (from last BMT) was at the clinic today so his mom Julie stopped by to say hi and bring us some food. It was nice to see her--we miss hanging out with our little club at the end of the hall :)
That's about all I have to report today--I'm kind of brain dead from chasing after Gwen all day, plus just being in the hospital seems to suck all the energy out of me. Like Ben says, it's exhausting doing nothing all day! But we are so happy that Gwen has had another good day, and we are one day closer to her being healthy again!

Tuesday, April 5, 2005 11:56 AM CDT

DAY -6

Gwen is still doing well--she's eating and has lots of energy for playing and racing her baby stroller down the hall. She had a little bit of a rough night last night, with some stomach cramps that woke her up twice. She was in a lot of pain, but it would come and go until finally she settled down and went back to sleep. The doctor came in to examine her but couldn't find any trouble. Whatever it was seems to have resolved itself and she's fine today.
The highlight of Gwen's day yesterday was getting to see Kylie for a minute in the hallway. They aren't really allowed to play together, but they can do their laps at the same time ;) Gwen gave her a hug and kept touching Kylie's mask and her bald head. Kylie was feeling pretty rotten, but hopefully it cheered her up a little to see someone her size! They looked like twins, all dressed in pink with their masks and matching hairdos :) For a while Gwen was in the playroom with Ben while I was in hall talking to Raquel, and Gwen and Kylie were touching hands through the glass window. (Gwen was also trying to feed Kylie!) Anyone who walked by did a double-take because they looked like mirror images!
Anyway, we are hanging in there, and having a good day so far. Our nurse today is Norah--Gwen calls her Dora and she just loves her :)
Thanks as always for your prayers!

P.S. Anna is doing great up in D.C. with my parents. She got to see her best friend Auby yesterday and have a sleepover with her. We appreciate your remembering her in your prayers along with Gwen!

Monday, April 4, 2005 2:43 PM CDT

Monday update:

DAY -7
We are back at Egleston! We are in the same room as last time, 362! When we were walking down the hallway, Gwen ran right up to her door and said "Gwen's room!" and walked right in. So I feel that getting our same room again (especially when the whole floor is packed like it is) is one of those blessings that just makes things easier. We were also lucky that one of Gwen's favorite nurses, Erika, is her nurse today. It's nice for Gwen (and us!) to ease back into things with familiar surroundings and a familiar face to take care of us. We started the chemo today, and so far so good. We'll keep you posted! Thanks for all your love and prayers!

Saturday update:

As many of you know, Ben and I both come from big families (seven kids in each!) and we have been so grateful for the support of our parents and siblings throughout this whole ordeal. We got a major surprise from them last week—apparently our siblings have been sneaking around behind our backs to create an organization called The Team Gwen Foundation!!! Their goal is to help support Gwen by raising money for her medical expenses, as well as promoting awareness of childhood cancer. WOW, we were blown away! Not so much at the idea that they all wanted to help, but at the level of organization and subterfuge that was going on right underneath our noses! It’s not something we would usually advertise to the world, but believe it or not, the structural engineer/stay-at-home mom combo is not exactly lucrative! So as hard as it is to admit that we could use the help, we are grateful for our siblings’ initiative in setting this up. The big surprise they had for us was that they have ordered TEAM GWEN wristbands (they say TEAM GWEN on one side and Cure Childhood Cancer on the other). So if you would like one, they are $5 each (this includes shipping) and they come in youth and adult sizes. You can make checks payable to:

The Team Gwen Foundation
1405 N. 125 W.
Bountiful, UT 84010

Any questions you can email teamgwenfoundation@gmail.com

SO on to our more usual update…. We had a great clinic visit Friday! Gwen's counts are all up: WBC 3.57, ANC 2470, HBG 9.7, and platelets 92,000!!! So we are good to go for admission on Monday. We'll be checking in bright and early at 7:30 a.m. so they can start the chemo at around 9:00. We are so excited to get this behind us that we can hardly wait to start! As much as we do not look forward to Gwen feeling horrible again, we know we have to go through it, and having it hanging over our heads is almost worse…. So we are just trying to get everything ready to move back into the hospital (what a job)! Anna is having fun with Grandma Noelle and Grandpa Whit, but she has been a little homesick at bedtimes. Please say an extra little prayer for her that she will be able to enjoy her trip and won’t be too lonely for me and Ben and Gwennie.

***Please say prayers for Gwen's friend Kylie, who is going through the worst of transplant right now! Her website is the same as Gwen's, just substitute Gwen's name with "kyliescorner."

Saturday, April 2, 2005 8:02 PM CST

As many of you know, Ben and I both come from big families (seven kids in each!) and we have been so grateful for the support of our parents and siblings throughout this whole ordeal. We got a major surprise from them last week—apparently our siblings have been sneaking around behind our backs to create an organization called The Team Gwen Foundation!!! Their goal is to help support Gwen by raising money for her medical expenses, as well as promoting awareness of childhood cancer. WOW, we were blown away! Not so much at the idea that they all wanted to help, but at the level of organization and subterfuge that was going on right underneath our noses! It’s not something we would usually advertise to the world, but believe it or not, the structural engineer/stay-at-home mom combo is not exactly lucrative! So as hard as it is to admit that we could use the help, we are grateful for our siblings’ initiative in setting this up. The big surprise they had for us was that they have ordered TEAM GWEN wristbands (they say TEAM GWEN on one side and Cure Childhood Cancer on the other). So if you would like one, they are $5 each (this includes shipping) and they come in youth and adult sizes. You can make checks payable to:

The Team Gwen Foundation
1405 N. 125 W.
Bountiful, UT 84010

Any questions you can email teamgwenfoundation@gmail.com

SO on to our more usual update…. We had a great clinic visit Friday! Gwen's counts are all up: WBC 3.57, ANC 2470, HBG 9.7, and platelets 92,000!!! So we are good to go for admission on Monday. We'll be checking in bright and early at 7:30 a.m. so they can start the chemo at around 9:00. We are so excited to get this behind us that we can hardly wait to start! As much as we do not look forward to Gwen feeling horrible again, we know we have to go through it, and having it hanging over our heads is almost worse…. So we are just trying to get everything ready to move back into the hospital (what a job)! Anna is having fun with Grandma Noelle and Grandpa Whit, but she has been a little homesick at bedtimes. Please say an extra little prayer for her that she will be able to enjoy her trip and won’t be too lonely for me and Ben and Gwennie.

***Please say prayers for Gwen's friend Kylie, who is going through the worst of transplant right now! Her website is the same as Gwen's, just substitute Gwen's name with "kyliescorner."

Thursday, March 31, 2005 12:43 AM CST

Today marks a milestone for us--Anna's first trip away from home without mom or dad! I just shipped her off to D.C. with my parents. They are driving up there, then Anna will fly back home accompanied by my sister-in-law in two weeks. Yikes! I hope she does OK! But she was sure excited to go and I know she'll be well taken care of. My mom is a lot of fun (she got herself some new roller skates for Christmas, if that gives you any idea!) and Anna will also get to see some of her cousins, as well as her best friend Aubony who lives in Virginia.
We have a clinic apt tomorrow, so hopefully we'll get the final word on an admit date for Gwen. She is still doing great, eating truckloads of mac & cheese, etc. I guess she's carb-loading for her next big race! She's always dragging me to the pantry or the fridge so she can check if there's something new and exciting for her to eat. "Let's see..." she says. Yesterday she asked me for a bag of sugar!

***Please say prayers for Gwen's friend Kylie, who is going through the worst of transplant right now! Her website is the same as Gwen's, just substitute Gwen's name with "kyliescorner."

Tuesday, March 29, 2005 12:27 AM CST

We were so sad to hear today of our caringbridge friend Coulter Hampton's passing. His struggle with cancer was a difficult and painful one. Our hearts go out to his mom, dad, sister, and brother. They have had to endure so much already, and now have to deal with the loss of their precious child and brother. Please remember this special family in your prayers.
It makes me feel just sick inside whenever one of the kids we've known loses their battle with cancer. It makes me determined to do whatever it takes to help find a cure.
Right now for me, that means doing my best to help Gwen get through this, but I'm trying to figure out what my calling will be beyond that. I feel that I have to do SOMETHING so that we don't keep losing these children!
One a brighter note, Gwen is doing really well. She is eating constantly (it turns out we don't run a household here, but a 24-hour buffet!) She wants "toas butto" (toast with butter), macaroni & cheese, waffles, chocolate milk, yogurt, and whatever else pops into her head ("CAKE! WANT CAKE!") She does keep us laughing. The other day I noticed she was giving her red tube (her favorite) a hug and feeding it some macaroni. We feel so blessed, especially with being reminded at Easter of the miracle and blessings of the Atonement and Resurrection of Jesus Christ. We know with certainty that through Him, we will live again. No matter what happens, our family is eternal, and we have never been more grateful for that knowledge.

Friday, March 25, 2005 4:21 PM CST

Today was a clinic day--here are Gwen’s counts: WBC 1.49, ANC 820, HBG 8.6, and platelets 49000. So her white count is still low, but her ANC ( a measure of her ability to fight infection) is a up a bit, and so are her other counts. So they are setting a tentative date of April 4th for her next transplant, depending on her counts as well as the bed situation at the hospital.
While we were at the clinic, we stopped by the floor to check on our friend Kylie, who is in for her transplant. She and Gwen are just days apart both in age and time of diagnosis; both have Neuroblastoma. Please keep her in your prayers along with Gwen. Also in special need of prayers right now are the Nelson family, who just lost their 16-year-old Claire to a relapsed brain tumor. We met her at Camp Sunshine just a few weeks ago, and she was a beautiful and sweet girl.
My sister Esther and her husband Robby have been here this week, which has been so much fun. Esther has always been close to Anna and Gwen, but they have been especially taken with their new uncle (they were just married in December). Gwen keeps saying, “look Robby!” and calling him, “so slilly!” And Anna has to be sitting next to him at all times. It’s nice to have company because we are pretty much cooped up in the house most of the time. The big daily outing is going to the park. It was so hot and sunny today that I broke out the sunblock, and we could only stay about 15 minutes. It gets pretty HS (family code for hot and sweaty!) under that mask. The other day a kid asked, “is that a gas mask?!”
Hope you enjoy the new pictures!

Monday, March 21, 2005 8:48 AM CST

Is today Monday already? For those of you who have been holding your breath about Gwen's counts on Friday, here they are: WBC 1.52, ANC 780, HGB 8.1, platelets 38,000! Her white count is low because they stopped the Neupogen (which stimulates white cell production). They want her bone marrow to work hard and not get lazy with too much help from the medicine. Please pray that her counts will recover quickly so that we can get back in for the second transplant sooner rather than later. As nice as it is to be at home, we have that next transplant hanging over our heads. We really want to get it over with!
But like I said, it is really nice to all be at home. In every prayer, Anna says she's thankful we're a happy family and we all love each other. We really are so blessed and I wouldn't trade my little family for anything!

Friday, March 18, 2005 6:20 AM CST

Well, as they say no news is good news! Sorry for the delay in updating, but we have just been enjoying being a somewhat normal family!
Gwen is doing really well. She's been eating more every day and has had hardly any vomiting, and no more diarrhea. We are very pleased with her progress. We'll go to the clinic today, so I'll update later on her counts.
Aunt Sue has been here, and she is like the endless supply of fun activities for kids! We have all been really enjoying her visit.
We are so excited to hear that Caroline (she is one transplant ahead of Gwen on the same protocol for Neuroblastoma) will be going home today. Please keep her in your prayers as well as Ethan, who is still inpatient with his 2nd transplant. We have really become close to these families and it was great to have friends going through the same thing we were. I wish I had a picture of Ben, Charles and Chris hanging out in the hallway talking until midnight (much to the amusement of the nurses)! Having a child with cancer gives you access to a club you never wanted to join, but boy do you get to meet some special people! Not only other parents and families, but all the wonderful people who volunteer for CURE, Camp Sunshine, Angels in Atlanta... Not to mention all the amazing doctors and nurses who now feel like part of our family! We love you all and are so grateful for the way you have touched our lives!

Monday, March 14, 2005 8:19 PM CST

As you can see from the photo, Gwen got to go to the park yesterday! It was a beautiful, sunny, and warm day. She was in heaven getting to run around outside, even with her mask on. Whenever she wants to go outside she comes and tells me "Outside, little walk! Mask, hat!" She knows the routine, allright.
We got some great news at the clinic today: Platelets 23,000! (WBC 2.29, ANC 1500, and HBG 7.9 for those of you who care about counts!) This is great because she hasn't had a transfusion for almost a week, so this means her own bone marrow is really kicking in! Platelets are usually the last to come up (they were 13,000 on Friday--transfusion is needed at 10,000 or less). Some more good news: no vomiting or diarrhea today! And even more good news: Gwen has over the last 24 hours consumed several sips of water, some bites of yogurt, a bite of cheerios, and 1/4 piece of toast! The fact that she is even interested in food right now is great. So although we know it'll still be slow going for a little while, she is really doing great and we are SO pleased with her progress!
Lots of love to you all,
Tabitha, Ben, Anna and Gwen

Sunday, March 13, 2005 10:21 AM CST

We are doing great at home! We have been pretty lazy--we still haven't quite unpacked from the hospital... But it's just so nice to all be together.
Gwen was still vomiting a lot and had a lot of diarrhea yesterday, so we increased her IV fluids and we didn't turn on her G-tube feedings last night. She's been doing better today. It will just take some time for everything to recover.
She has been so happy to be back at "Gwen's house." She has been so sweet and polite lately--yesterday after one vomiting episode, I asked her if she still needed to spit up some more, and she said with a smile "no, thank you!"
Please keep her in your prayers, that she'll be able to stay at home until the next transplant. Also please remember her friends Caroline and Ethan who are still inpatient with their second transplants.

Friday, March 11, 2005 2:43 PM CST

NEW PHOTOS!

DAY 14 WE ARE HOME!!!

Sorry if we kept anyone in suspense yesterday--our internet was down so we couldn't update. But we did make it home yesterday!!! It was so sweet for Anna to get to run up and hug and kiss Gwen. They got pretty giggly and excited. Gwen sure seems glad to be home--she has been sleeping a lot (happy to be back in her own bed!) and then while she's awake, she's been running around the house saying "Gwen's house!"
We celebrated her birthday yesterday which was really fun. Aunt Deb and Anna made cupcakes and we filled the living room with balloons. Gwen got a lot of fun birthday packages. It's a good thing we had Anna there to enjoy opening Gwen's presents, because Gwen kept leaving to go play with the balloons :)
We had a clinic visit this morning and we were relieved that we didn't need any transfusions today. Her counts seem to be stabilizing pretty well. The only real trouble we're having right now is that she has been vomiting up all her tube feedings (we had a nice surprise in her bed this morning, and again in the car on the way to the clinic--ugh). Dr. Chiang said that it could be the methadone she's on to wean from the morphine, but more likely it's just that her little tummy isn't ready for much yet. So we'll try slowing down the feeds some more and see if that helps. By the way, Dr. Chiang is one of the nicest people I've ever met. We have felt so much confidence in him, and in all of Gwen's team here at Egleston and also at Scottish Rite. We LOVE all our nurses. They have given such amazing care and love to Gwen and all of us. So a huge and heartfelt THANK YOU to all of you who are involved in Gwen's care! WE LOVE YOU!!!

Wednesday, March 9, 2005 7:03 PM CST

DAY 12 HAPPY BIRTHDAY GWEN!!!!!

Gwen had a great day today. We are SO excited to be going home tomorrow that I couldn't really be dissapointed about spending her birthday in the hospital. That was already a given--what we didn't know was that we would get to go home in record time!!!
Gwen's energy has really be shooting up, and she pretty much ran her laps today (although she has to hold my hand--she's a little unsteady from all the medicine and weeks of not much activity).
She got a few new little baby dolls for her birthday, so now we have: Baby, Other One Baby, Little Baby, Purple Baby, and Yellow Baby. We've had a couple of close calls with babies being lost in the linen hamper after Gwen's bed being changed. Fortunately they have all been retrieved in time. I can just see myself rummaging through acres of nasty hospital laundry....
We also had a cute cake delivered as a Happy Birthday from Food Services. Gwen liked the looks of it but didn't eat any. It may still be a while before she decides to eat, but luckilly we have the G-tube to keep her nourished. She will also be sent home on IV fluids for a few days. Well, I believe this has run on long enough--can't wait to update tomorrow night from home sweet home!

Tuesday, March 8, 2005 7:17 PM CST

We have really been blessed. Gwen continues to improve at a crazy rate! Today she was very cheerful and energetic. They are planning to send us home this Thursday if everything continues as is. At this point her doctors feel that it will not be necessary to stay at the nearby hotel - and we won't argue with them.
Aunt Debbie is here this week - she stayed with Gwen last night and let Taba and I have another evening at home together with Anna. Its hard to leave Gwen - but the rest and time together is priceless.

Please keep Gwen's two transplant buddies in your prayers- Ethan,who just received his new cells yesterday, and Caroline,who is at day 13 and still dealing with a pesky fever.

PS - Happy Brithday! Tomorrow is Gwen's 2nd Birthday - Its no good spending your brithday in the hospital, but we are so glad that she will be feeling somewhat better and also know that she will be able to go home in a couple of days for the real celebration!

Monday, March 7, 2005 5:57 PM CST

DAY +10!!!!

Well, all the rumors about the magical day +10 seem to be true! Throughout the day we've seen a big improvement in Gwen's mood. She really seems to have turned a corner today. Her counts continue to increase (WBC is about .7) and her G-tube site also looks a lot less red.
But the best has been that we've seen her smile a lot more, and by this afternoon she even let us reinstate the rest of her book collection (see you later, Good Dog Carl).
We had a nice visit this morning from Dr. Rapkin, her oncologist at Scottish Rite. He has always been Gwen's favorite, and he played with her for a while and really got her giggling. And then when the group of BMT doctors made their rounds, Gwen was much more cooperative than she's been with them. Although when she'd had enough of them, she yelled, "Bye bye friends! Friends go bye bye!"
Dr. Chiang said we'd probably get to leave the hospital on Thursday. We'll have to go to a hotel across the street for a few days (probably through the weekend) before we can come home. They've also asked us to keep Anna out of school for a few weeks, because there are so many nasty bags going around and Gwen won't have much of an immune system for a while. So we are extra glad to have Aunt Debbie here now, with Aunt Sue and Aunt Esther to follow. Anna loves hearing the lineup--"who's coming NEXT?" We are so grateful to have had so much help from our families!

Sunday, March 6, 2005 5:48 PM CST

DAY +9

Gwen's white count has been steadily improving over the last few days, which is great news! It's still small (about .2) but it's there, meaning her new stem cells are doing their job! They also took her off her G-tube feeds to see if that would help with her tummy cramps, and it seems to be helping some. Her G-tube was only going at 5 ml/hr, but her stomach is so torn up from that chemo that she just couldn't handle even that. So she seems a little more comfortable today, but still pretty crabby. She has a laundry basket full of books, but she wants one and only one book: "Good Dog Carl." She wants us to lie down next to her and read it over and over and over and over....
Speaking of being crabby, I have been in foul temper ever since Friday when I hurt my back! I had back surgery in October of last year. It had been doing great, and then Friday, I was just bending over to reach for something, when I felt it go out on me. It's nothing like as painful as it was before surgery (when I could barely walk), but it's hurting pretty bad. It's enough to have one sickie in the family, there's not time for another one! So please say an extra prayer for me that I can be feeling better soon! Thanks as always for all your love and support,
Tabitha

Saturday, March 5, 2005 9:42 PM CST

DAY +8

Just a quick update tonight--Gwen is still about the same. Still very uncomfortable, but not any worse. We are hoping to see some improvement soon as those little cells start engrafting. I'll try and give more details tomorrow.

Thursday, March 3, 2005 4:12 PM CST

DAY +6

Gwen is still hanging in there. She is in a good deal of pain--her stomach really seems to be bothering her. The entire lining of her digestive tract is like one big canker sore, so it's no wonder she's uncomfortable.
We have been able to get her to do some laps, although she protests. She just wants to stay in bed all day, but it's important to get her moving and using her lungs so infection doesn't set in. Crying is good for her lungs too, so we remind ourselves of that when we have to make her do something she doesn't like.
Grandma Marie was nice enough to spend the night with Gwen last night so Ben and I could actually spend a little time together not in the hospital!!! That was really nice, and Anna enjoyed seeing both her parents in the same place for once, too!

Wednesday, March 2, 2005 10:45 AM CST

DAY 5

Hi everyone, sorry for not updating yesterday! I wish I had because I already can't really remember what happened 24 hours ago! Gwen is still feeling crummy, but we know it could be so much worse. Her mouth sores have not been too awful--she is still hanging on to those fingers (just barely)! The mucositis is pretty nasty--as Ben put it, it's like she's trying to cough up a raw egg. Ugh. She had blood and platelets yesterday morning. My dad, ever the jokster, said, "that sounds like a nutritious breakfast!" Ugh again!
Ben got her to walk three laps last night, which is great because the last few days she has hardly been able to get out of bed. They've also increased her morphine a little more today.
Anna and I had fun last night at the Camp Sunshine family night. Although as soon as Anna sat down at a table with some kids she promptly told them, "I have some bad news. My little sister Gwen has cancer!" I almost started crying! But I guess it's good that she feels she can talk about it. The Camp Sunshine House is just beautiful, and they have an awesome playroom for the kids. So after dinner Anna had a great time playing with the other kids (there were several other kids her age!) while I joined in the parent support group. It's so helpful to get to know other families going through this too!

Monday, February 28, 2005 10:22 AM CST

DAY +3

Well, right on schedule yesterday Gwen developed a fever, and they have already grown a culture from her central line. She's on three different antibiotics, which is giving her some interesting diapers.
Yesterday she asked to go for a walk ("little walk! shoes, mask!") but when we got her up she was just trembling with the pain and couldn't walk at all. So pathetic!
Ben had a rough night with her last night--she was having issues with her blood pressure and heart rate and everyone was in and out of her room all night. She has been getting really agitated when anyone tries to examine her, and then it takes her a while to settle down. There is one poor resident in particular that she can't stand--she throws a fit whenever he tries to come near her. If looks could kill!
We have gotten a few smiles out of her, though. A neighbor patient gave her some bubbles, which she really liked. Also she spent about ten minutes this morning (after a nice bolus of morphine) happily listing all the things she likes. "I like Dada, I like Mama, I like Anna, I like stars, I like pigs......" So sweet.

Sunday, February 27, 2005 6:59 PM CST

Just a quick update - Gwen had a pretty difficult day today. Most of it was spent in bed with Mom reading her books. She is experiencing a decent bit of pain - they started her on some morphine last night which has been a big help. We have started to see a little blood in her vomit which they tell us is one of the first signs of the sores in her mouth and throat. Even though these things are to be expected, it doesn't make them any easier to see.

Saturday, February 26, 2005 8:33 PM CST

It's getting harder to update the more sleep deprived I get, so forgive me if I'm not quite coherent. We're begining to see some effects of chemo--Gwen needed a blood transfusion this morning. She's also starting to turn red, like a sunburn, and it is a little painful, especially in her diaper area--"bummie hurts!" (if you know Gwen, you know she adds "ie" to everything).
She did manage all her laps, though! She had fun taking Baby and Other One Baby for a walk in their dollie stroller, and she made sure they were both wearing their masks :)
Thank you so much for your prayers, they make a huge difference. I would also ask for a special prayer request for Anna--she's really missing Gwen, and missing having all the family together. It's especially hard for her not seeing Mom every day. It was a little easier at Scottish Rite because she could come hang out at the hospital, but she can't do that here. Anyway, we are all doing the best we can, and we'll get through it! We are SO looking forward to a family vacation when this is all through!

Friday, February 25, 2005 12:25 AM CST

NEW PHOTOS POSTED 2/25

DAY 0!!!! Happy RE-BIRTHDAY Gwen!

Gwen is now sleeping peacefully, letting all those millions of beautiful new cells get to work! The infusion went great, although she did experience some coughing and vomiting, which is common. Her mouth and skin still look good, and she did two laps this morning. Hopefully after her nap she'll feel up to doing a few more. She seems a little worn out today, which is to be expected! Everyone has been pretty amazed with how well she's done so far. I know it is because of everyone's prayers, and also I think there is just something special about Gwen!

Thursday, February 24, 2005 10:12 PM CST

DAY -1

Wonderfully, not much to report. Today was a "rest" day and not much happened. Gwen gets quite a bit of lotion and other things to protect her skin. When not putting on lotion, its back to reading books and watching Dora.

Wednesday, February 23, 2005 6:44 PM CST

DAY -2

Last day of chemo! Tomorrow will be a day of rest, then FRIDAY (not Saturday as I said before--boy do the days start to blend together!) is day zero--TRANSPLANT DAY!!!
Gwen is still doing pretty well-amazing since she has been pumped full of chemo the last six days. CYTOXIN--I'm no linguist but it sounds to me like it pretty much means "cell poison." She's on the IV nutrition now and hasn't eaten anything today besides some ice. She asked for fruit snacks, but they ended up "going night-night" in the ice. The nausea is starting to kick in, as well as some diarrhea, but so far nothing too bad. We know the side effects are on their way, but every day that passes without them we feel grateful relief. We are confident that Gwen will get through this as well as any kid possibly can. She has such a bright shiny spirit inside her. My dad told me once, when she was first diagnosed, that her body may be small, but her spirit is full-grown!

Tuesday, February 22, 2005 7:39 PM CST

DAY -3

Horaaay! Gwen took her last bath today at 2:00pm. I think we will all be a little bit happier now that they are over. She has had some minor irritation on her skin from the chemo but it looks like the baths have done the trick for the most part. We are keeping a carefull eye on her for any more signs of burns or irritation. Gwen has been wearing some of older sister Anna's pajamas because they are big and baggy on her and they don't stick to her skin. She thinks its the coolest thing in the world to wear her big sister's clothes.

She continues to amaze us with her happy little self. She is definitely a little more tired today but she doesnt complain and still smiles and laughs at every opportunity. It's so fun to see her in such good spirits. Today Grandpa and Grandma Mason spent most of the day with her and they had a grand time together.

Gwen has all but stopped eating. She is getting a very small amount of formula in her G-Tube just to keep her gut working and they started her with the TPN feeding through her central line. However, Grandma was able to coax Gwen into eating a little piece of chocolate.

Tabitha and I got a good laugh giving Gwen one of her last baths. Tabitha got out the Video camera to get a shot of Gwen in the tub. Tabitha was recording Gwen and she asked her, "Gwen, what are you doing?" To our horror, Gwen replied, "Poop!" Sure enough, I spent the next few minutes disenfecting the tub - I felt like Bill Murray in "Caddyshack".

Thanks for your prayers, thoughts, and support. It means so much to us! This experience has really taught us that people are so great and generous. Thanks again!

Monday, February 21, 2005 8:00 PM CST

DAY -4

So far so good. Gwen is still cheerful and pretty energetic, but her appetite has definitely taken a dive today. She also complained tonight that her mouth hurts, so we may be seeing the begining of mouth sores. We'll keep a close eye on her so we can begin pain meds when she needs them. She got to be free of her IV pole for a few minutes tonight, so we took advantage and had her running around playing hide-and-seek with Dad. She has the best laugh and it was fun to hear her having such a great time!

Sunday, February 20, 2005 7:43 PM CST

Gwen is still doing great today! She was cheerful about walking all her laps, mask and all, and she has been playing, laughing, singing and dancing. Her appetite is still good too--she has been saying her new favorite word a lot: "delicious!"
So no complaints here, except of course for the middle of the night baths, which are terrible (as ve suspected they vould be--haha Mason family).
Anna is doing fine too, although she did have a bit of a meltdown last night. I don't blame her--I had one myself last week! But she is happy to have Grandma and Grandpa Mason here, and she also had fun today drawing lots of pictures for little sister's hospital room.
So please keep those prayers coming--something is definitely working right!
Love, Tabitha, Ben, Anna and Gwen

Saturday, February 19, 2005 12:44 AM CST

DAY -6

Gwen is still doing well today, although she HATED her 2:00 am bath. She has gotten used to wearing her mask any time we leave the room, which is a huge blessing. We practiced and practiced at home and she would have nothing to do with that thing. But after one time of holding it to her face while she screamed and tried to rip it off, she put it on the next time as docile as can be. She makes sure her baby doll is wearing her mask too, and then as soon as we're in the BMT playroom or back in her room, she's as concerned with quickly getting baby's mask off as her own. She is such a sweet little bug.

Friday, February 18, 2005 2:03 PM CST

DAY -7
Here we are at Egleston! We arrived early this morning and got started with the chemo at about 10:00. She's getting Thiotepa, which can burn the skin as it's excreted, so she'll get baths every six hours. So far so good--we'll see how she does in the middle of the night! She is in high spirits today, cheerfully greeting everyone she sees. No nausea yet, and her appetite is still good. Please keep all of us in your prayers!

Tabitha, Ben, Anna and Gwen

Wednesday, February 16, 2005 6:34 PM CST

Friday is the big day! We had a clinic visit at Egleston today for final lab work and signing of the consent forms. The only form I was happy to sign was the one allowing for Gwen's data to be studied so that maybe some other child might benefit from what she has had to go through. The other forms basically say, I realize my child might die from this treatment, but go right ahead! At least that is what it feels like sometimes.
We did have a really nice visit with Jack yesterday, who is about six months ahead of Gwen in the same treatment protocol. There is no better boost than seeing another kid who's already made it through what yours is about to face, and is healthy and happy.
For those of you wondering what exactly a bone marrow transplant entails, here's a (not-so-quick) summary:
Chemotherapy kills rapidly growing and dividing cells, which includes cancer cells but also skin and hair, the lining of the mouth and GI tract, and bone marrow, where blood cells are produced. This is why after a regular round of chemo, we always talk about Gwen's counts--refering to white blood cells, red blood cells, and platelets.
The transplant will be done in order to give her giant mega-doses of chemotherapy. These high doses will be a huge blow to her cancer--but will also completely wipe out her bone marrow. Her bone marrow wouldn't recover on its own, so following the chemo (called the preperatory regimen) she will be infused with the stem cells that were harvested earlier from her own blood. Stem cells are basically baby blood cells that haven't differentiated into white blood cells, red blood cells or platelets yet. That is the actual transplant part, also called "stem cell rescue." These cells will engraft back into her bone marrow and start producing healthy new blood cells. In Gwen's case, they will do this whole process twice (tandem transplants).
We ask for your prayers these coming weeks, that Gwen's cancer will be completely destroyed, and that her body will be able to withstand the harsh side effects and that she will recover quickly. Please also pray for her to keep her spirits up and be able to endure all of this emotionally as well as physically. (That goes for me and Ben and Anna too!) Thanks so much for all your love and support, you don't know how much it means to us!

Love, Tabitha, Ben, Anna and Gwennie

Sunday, February 13, 2005 4:48 PM CST

We had such a fun day at the CIRCUS! It was a special Camp Sunshine day at the Big Apple Circus at Stone Mountain. We got to see lots of other cancer families there--we got to sit next to Jack's family and it was great to finally meet them. The circus itself was pretty amazing, and we were right there in the second row! Gwen's favorite part was the horses; she kept yelling "NEIGH! NEIGH! Nice horsies! Fun!" Anna loved the whole thing and it was barely over before she announced "I hope I can get to be in a circus someday!"

P.S. The new photo is one that Amy Green (a wonderful CURE volunteer) took for us yesterday. She was so patient--Gwen would NOT sit still!

Thursday, February 10, 2005 8:31 PM CST

We've had a great day today; Gwen has been so cheerful and happy. We've really been savoring these couple of weeks at home. Since Gwen woke up this morning asking to "eat! PIZZA!" we decided we better go the Mellow Mushroom tonight, which was really fun. The girls and I had fun dancing to the Ramones in the car (Anna's favorite song is "the KKK took my baby away"). A huge thank you to my sweet relief society sisters (from church), who came to help me clean the house today. That does so much to lift my spirits. We have a clinic apt tomorrow, then one more next week before we head into the bone marrow transplant. We are getting nervous, but excited to move on with her treatment. Right now kind of feels like the calm before the storm, but that's okay, we'll still enjoy it!

Sunday, February 6, 2005 10:07 PM CST

NEW PHOTOS POSTED 2/7/05


Gwen continues to do great at home. She is having a fun time playing with Anna and grandma Noelle. I came downstairs to find Gwen chewing on the end of one of her central line tubes. "Gwen! get that out of your mouth!" ahh well - at least she is not freaked out by all of her tubes. The weather here in Atlanta has been very springlike and we have been able to spend some time outside. Yesterday I took Gwen and Anna to a small playground and slide nearby. Gwen ran around like crazy saying, "slide, slide, slide, slide!" she seems to savor every moment she has outside of the hospital. I just loved watching her run around with her bald head and her central line tubes poking out beneath her jacket. She is really beautiful. When she is feeling good - she goes out and has a good time.

Ben

Friday, February 4, 2005 11:49 PM CST

My mom, who's down here visiting from Maryland, posted this little story on our family website; I thought it was pretty cute:

Gwen is so happy to be home. She runs around the house in her Dora slippers, asking to "watch Dora show". She is talking alot, and so specific, the girl knows what she wants at any given moment.
I felt I was at a comedy club on stage, and she was in her highchair, desperately trying to get me to understand her.
Gwen: tow
Grandma: toes?
Gwen: towwz
Grandma: oh, toast!!!
Gwen: big smile
Grandma: running around the kitchen, while she's bossing me around from her high chair, and I'm guessing, and acting out what I think she wants.
Gwen: fruu sak
Grandma: fruit? fruit?
Gwen:big smile--fruu saakk
Grandma: oh, fruit snack!! Got it, man I'm getting good at this game.

Friday, February 4, 2005 8:57 AM CST

Gwen is back at home and SO HAPPY! Wednesday morning we were released from Scottish Rite and booked it over to Egleston for a very long day of pre-transplant evaluation (including tests for kidney function, hearing, echocardiogram, chest x-ray, and meetings with doctors, child life, etc). When we finally came home, Gwen woke up from being asleep in the car and in a happy, quiet little voice said "Gwen's house!" We are really looking forward to having Gwen at home for two whole weeks. The girls are also having a grand old time with Grandma Noelle who is visiting for another few days. We so appreciate having such a supportive family. None of them live close, but we have had a steady stream of brothers, sisters, and parents coming to visit, which has just been the best!

Tuesday, February 1, 2005 7:28 PM CST

Gwen is feeling much better tonight! She is pretty much back to her cheerful self. Her fever spiked last night, though, so they need to watch her one more night. She should be good to go in the morning, so we will plan on making our 8:00 am apt at Egleston for pre-transplant evaluation. This will involve a whole day of testing, meeting with doctors, signing consent forms, etc. So it will be a long day, but at least we'll have home to look forward to at the end of it!
Ok, those of you who are easily grossed out can stop reading right now. This morning, when I arrived at the hospital with Anna and my mom, who we'd just picked up at the airport, Ben said, "Oh, I was just about to change her diaper, I think she's a little stinky." Well, we pulled back her covers to discover about a gallon of liquid yellow poop EVERYWHERE. Even Holly, our nurse, who you'd think would have seen it all, said "that's the sickest thing I've ever seen! I can't believe something so disgusting could come out of someone so sweet!" UGH. It's those antibiotics! Oh well, when I first became a mother I decided I better be prepared for at least one horrible disaster every day! Today should count for at least a week!

Monday, January 31, 2005 7:11 PM CST

Good news: Gwen finally got up this evening, and took a little walk around the halls. First time since Friday that she has wanted to move at all! She is slowly getting back to her usual cheerful self, wanting to read lots of books and "count with me!" She also received transfusions of platelets and red blood cells today. Her fever has been staying low (nothing above 100) and so far nothing has grown in her blood cultures, so that's a good sign. Now that her counts are starting on their way back up, her G-tube site is looking worse, so that's probably the culprit again. But it doesn't look as serious as some of her past infections, so we're hoping for a short visit this time.
One of our Neuroblastoma friends, Chandler, who has already completed his treatment, is showing some worrisome signs of relapse. He is having an MIBG scan tomorrow, and they should get some answers then. (See link above.) Please say some extra prayers for him and his family!

Sunday, January 30, 2005 3:36 PM CST

Well, here we are back at Scottish Rite. Gwen's fever has not subsided, so they admitted us. She'll be treated with antibiotics until her counts start to recover. She has not moved for two days, she is just feeling rotten. Luckily we have a room on our regular floor, where we know and love our nurses. Thanks for keeping her in your prayers!

Friday, January 28, 2005 10:35 PM CST

We haven't seen Gwen's CT or MIBG scans yet, but the word is that they look good! So that is a relief. Unfortunately she is still having the diarrhea and vomiting. We're not sure what's going on; it seems that it's probably a combined effect of chemo and anesthesia, plus all the medications, the contrast from the scans, etc. It's just a lot for a little body to handle. Also, her counts have really dropped from the chemo last week, and she is not feeling so great. She has been running a slight temperature--please keep her in your prayers that it won't turn into a real fever, and therefore another hospital stay. I am feeling pretty worn out and could really use a few days without having to go to the hospital!

Wednesday, January 26, 2005 7:08 PM CST

Hi everyone,
We've had a better day with Gwen today. This morning was a little long, with the CT and MIBG scans, but Gwen did well and has slowed down on the vomiting and diarrhea. She has a clinic apt tomorrow; I'm hoping her counts will be okay and she won't need a transfusion. She's looking a little pale but seems to have pretty good energy.
We're looking forward to seeing the results of the scans after her surgery and the last round of chemo. We know there is still some tumor in her spine, but are hoping that there is just minimal residual disease otherwise. She is scheduled to be admitted Feb 18th for transplant. We are so nervous, but excited to be moving forward with her treatment.

Tuesday, January 25, 2005 3:37 PM CST

Let's just say that we've changed Gwen's clothes, sheets and car seat cover multiple times today. She's been vomiting and has had a lovely (not really) case of diarrhea. I very foolishly left the house for her appointment today without a change of clothes, so basically she showed up wearing a pair of Anna's pants that happened to be in the car, and her sweater sans shirt. And she came home in a hospital gown. By the way, her apt was for an injection of radioactive dye (sounds scary but is actually very safe) for her MIBG scan tomorrow. She'll also be getting a CT tomorrow--these scans are all part of her pre-transplant evaluation.
My sister Vanessa also arrived today from Canada--after only about 40 hours of cancelled buses, canceled flights, and getting her bag robbed (including passport, etc)! What a crazy day. Anyway, everything turned out fine (they caught the thieves and Vanessa got her stuff back) and we are glad to have her here for a visit. It means so much to us when a sibling comes to visit, since they all live so far away!

Friday, January 21, 2005 7:58 PM CST

Phew.... Long day today! Gwen's surgery wasn't scheduled until 3:00 in the afternoon. We had to wake her up from her nap to get to the hospital for her 1:00 check in time. Unfortunately they were running over TWO HOURS behind schedule (which no one bothered to tell us until it was nearly 3:00--but to be fair to the nurses, no one bothered to tell them, either, and they thought we'd be on time!). Meanwhile poor Gwen is starving, having been NPO (not allowed to eat) since midnight the night before. She had some juice this morning, but that was it. You can imagine we were all a little stressed out by 5:30 when they finally wheeled her back to surgery. All that for a 15-30 minute surgery! But the upside is that Gwen went in with five tubes hanging out of her chest, and came back with only two! She's doing fine, but having a good bit of nausea from the anesthesia (probably combined with effects from chemo the last three days). Please pray for her that as her counts drop in the next few days, that she will be able to avoid getting a fever. She'll also be getting a whole battery of scans and tests done in the next two weeks, getting ready for transplant to begin hopefully Feb. 18th.

Wednesday, January 19, 2005 6:44 PM CST

Only one more day of chemo! The last two days at the clinic have been long, but it has been wonderful to come home and be able to sleep in our own beds. Gwen is tolerating this round very well so far. No nausea or vomitting, thanks to those lovely anti-emetics. The other day Anna asked me, "Does Gwen still have that cancer?" I told her yes, that's why we need to pray hard every day that she will get well, and take her to the hospital for lots of chemotherapy. Anna then said "And don't forget her Zofran, so she doesn't throw up!" That kid doesn't miss a thing!

Sunday, January 16, 2005 9:03 PM CST

We have had a nice weekend at home--Gwen is feeling better and not complaining of pain as much. She's still walking a little funny since her surgery. Her ribs seems to jut out to the right, and her hips out to the left. We're not quite sure what's going on there, but we'll keep an eye on it. She has been so cheerful and happy the last couple of days. Her new thing is "look Mama, look Dada!" while she does something funny (like put a stuffed animal on her head). She has discovered that she likes to make us laugh, just like her big sister (anyone who knows Anna has probably heard a few too many knock-knock jokes).
We are getting ready for our LAST round of regular chemo, which will be Tuesday through Thursday. This round is the only one we get to do outpatient, so we'll get to sleep at home. No complaints about that! Then Friday she'll have another little surgery to remove her pheresis catheter (now that we FINALLY have all her stem cells harvested!), and change her g-tube to a button--it really is like a button that's flat against her abdomen, then we can hook a tube into it when we need it. By the way, every kid should have a g-tube! Not really, of course, but it sure is handy for giving all that nasty medicine!

Thursday, January 13, 2005 4:18 PM CST

Well, so much for favorable counts! After that interminable day yesterday, we did have to return to Egleston today. To their dismay they got less than half of what they needed yesterday--they couldn't figure out why; maybe the settings on the machine were off. So anyway, we were back there again today for a THIRD collection of stem cells. Gwen was as sweet as ever until we'd been there for about four hours, and she decided she'd had enough. She cried anytime anyone tried to go near her, and she also was complaining, "hurt!" which about made ME want to cry, too! I felt so helpless, and she kept looking at me like, "can't you get me out of here, Mom?" Gwen has been SO patient through everything, that I really hate to push her to her limits like that; she does not deserve it! But then again she doesn't deserve any of this; no child does. However much we hate it, though, I know there is a purpose for this trial in her life. We have already seen a lot of blessings and I know we'll continue to see them if we'll just take the time to look.

Wednesday, January 12, 2005 7:47 PM CST

Boy am I glad to see the back end of this day! We left the house this morning at 7:00 to get to Egleston for our 8:00 apt, and didn't get there until 9:30! Traffic was the worst mess I've seen in a long time. After almost two hours I had gotten about one mile from our house, and I called Ben practically in tears I was so frustrated! After we finally made it to the clinic, we had to wait FIVE HOURS for blood work, the nurse from Emory, etc, etc, until we could start the pheresis, which then went for another three hours. It was 6:15 when we finally left the clinic, but mercifully traffic wasn't bad coming back and we were home by 7:00. Phew.... Lucky for me Gwen is the most patient child in the universe. She was so good all day, even with no nap. The nurses could not believe how well behaved and sweet she was all during such a long day. Anyway, we will hear later tonight if they were able to get enough stem cells from today's collection, or if we need to go back tomorrow. Her counts were so favorable today that they said they'd be surprised if they didn't get enough, so we'll keep our fingers crossed for NO trip to Egleston tomorrow (even the most patient child in the universe has a limit)!

Sunday, January 9, 2005 9:02 PM CST

Gwen has continued to improve since she came home Friday. She is still sore, but the pain is pretty well controlled with medication. She is already back to chasing Anna around the house and her appetite is also getting better. We joke about "feeding our little kitty" because we're always leaving little snacks around for her to find (a plate of toast, a bowl of cheerios, etc). She has for the most part refused to eat in her high chair, but if she thinks she's getting away with something.... Anyway, I KNOW it's a bad habit, so don't any of you start giving me advice on discipline and/or proper nutrition!
We will be going in to Eggleston this week to finish harvesting her stem cells, then next week is round five of chemo, which will actually be outpatient. So we should have another good stretch of being at home (at least to sleep at night!) before we begin the transplant process next month.
Favorite Gwen word of the day: "chocolate milk!"

Friday, January 7, 2005 3:49 PM CST

Great news!
We are back at home! Gwen continues to amaze us with her ability to bounce back so quickly. Yesterday afternoon they removed her chest tube (which was a rather gory affair; I'll spare you the details but let's just say the tube was much longer than I expected it to be, and they took it out really fast).
But after it was out, she really seemed to be much more comfortable. She was cheerful as could be, and had fun playing on her bed with Anna and cousin Samara. I loved listening to her talk herself to sleep in her sweet singsong voice (since I went to bed with her at 7:30!)
This morning they unhooked her IV's, and she was able to walk a few steps before tiring. As of this afternoon, she is moving around much more easily, and doesn't seem to be in too much pain. Wow, what a girl!

Wednesday, January 5, 2005 9:16 PM CST

Just a quick update tonight--Gwen is feeling lots better, even in the last few hours. Earlier today she kept trying to cough, but couldn't because it hurt too much. She had a good long nap, though, and after that she seemed to improve. Tomorrow I'm sure we will have even better news, especially if they are able to remove her chest tube. I know I say this every time, but THANK YOU for your continued prayers and support! We love you for caring about our sweet Gwen!

Tuesday, January 4, 2005 9:13 PM CST

Today has been long and emotionally exhausting, but Gwen is now resting quite comfortably. She was so cheerful and sweet when they rolled her down to the OR this morning; it was hard to see her come back in so much pain. But Dr. Pitt said the surgery went well, and they were able to remove as much tumor as they hoped to be able to. What is left, they expect will be annhilated (I wish this website had spell check, especially after a long day!) by the bone marrow transplant.
When she came back from surgery they had us go to the second floor, since AFLAC (her usual stomping grounds) didn't have a room for her. At about 8:00 tonight they were able to transfer us up here, where it just feels much more homey. Our nurse tonight is Annie, Gwen's primary nurse. It is always a treat to see her, she is SO sweet.
By the end of the evening Gwen felt much better, and wanted to read books and sing songs. I knew we were in business when she asked for "Show! Dora!"
So she is already recovering nicely. Thank you SO MUCH for all your prayers in her behalf. We are so grateful for how blessed we have been. I'm especially thankful that Gwen's spirit is undiminished by all the pain and suffering she has had to go through. Her happy, loving personality always manages to shine through. What a beautiful example she is to all of us!

Monday, January 3, 2005 9:14 PM CST

Well, tomorrow is the day. Gwen is scheduled for surgery at 11:00 to remove her tumor. Please send lots of prayers her way that Dr. Pitt will be able to remove all of the tumor, and that Gwen will be safe and recover quickly!

Friday, December 31, 2004 8:19 PM CST

Happy New Year! We have had the best week, enjoying being all together as a family AT HOME! Gwen has been so much fun. She has really been talking a lot--I love it when you get to start hearing what's been going on in that little head all this time. Some of our favorite Gwen words are "skeek" (mouse), "I don't know!" "o-en it!" (open it) "noodle-oodle-oodle-oo" (noodle) and just the last couple of days she's been saying "yup" and "nope" instead of yes or no--not sure where that came from but it's pretty cute!

Tuesday, December 28, 2004 10:36 PM CST

We finally have Gwen's surgery scheduled for Tuesday, January 4th. This is the big surgery to resect the tumor. Dr. Pitt will be her surgeon, and we trust that he will do a great job. He knows Gwen pretty well, having already done three smaller surgeries on her. Following the surgery, Gwen will get one last round of chemo, then we head in to the bone marrow transplants. I can't believe how fast it's all gone so far. I guess it just feels like we're in some kind of wierd, crazy dream. It seems odd that regular life continues to go on.
We had a lovely, quiet Christmas at home. Gwen and Anna both loved it. They have really enjoyed spending lots of time together since Gwen is home, and Anna is on vacation from school. First thing Gwen asks for in the morning is "Anna, room! See Anna! Play!" She makes Anna play ring around the rosies over and over again, and she loves to brush Anna's hair and give her hugs and kisses. They love to make each other laugh and giggle. Such sweet sisters!

Friday, December 24, 2004 12:14 AM CST

Merry Christmas!
Gwen is feeling much better. We are so grateful to have her home for Christmas. We spent the last two days at the clinic at Eggleston. She was finally able to begin her stem cell harvest yesterday, but they didn't get enough for both transplants, so they will harvest again later. Usually we would be there today to finish up, but they are closed for the holiday.
As for us, we will be enjoying a happy, lazy Christmas day at home together as a family. We are so thankful for our two beautiful daughters, and for our Savior Jesus Christ who was born all those years ago. We know that through him our burdens will be made light. May we all remember Him and the peace He brings to us this season.
Love, Tabitha, Ben, Anna, and our sweet little Gwen

Tuesday, December 21, 2004 7:44 AM CST

We are back at home! Gwen was allowed to come home yesterday afternoon. She is still pretty sick, but her counts are on the way back up. Anna and I had a wonderful visit with my family, and Esther's wedding was beautiful. Anna was the loveliest flower girl I've ever seen, if I do say so myself. She was beaming all night! It was nice for her to get a turn in the spotlight.
When we came home, we were so sad to hear that our little friend Hayley had passed away on Sunday. It is truly heartbreaking to watch a family lose such a precious little one. Our love and prayers go out to the Thomson family.

Friday, December 17, 2004 9:35 PM CST

Gwen is feeling a little bit better tonight. She has had a rough couple of days. We had to bring her into the hospital yesterday morning (Thursday) due to a fever. She was started on antibiotics and had cultures taken. Yesterday was the worst - she wouldn't let go of me and she would cry and generally let anyone who came in the room know that their presence would not be tolerated. Last night my Brother Ralph came into town to help out. He has been a big help especially with Tabitha and Anna out of town for Tabitha's sister Esther's wedding this weekend. I knew Gwen was finally starting to feel a little better tonight when she asked to put on her Dora the Explorer slippers. She modeled them for us (pointing out all of the beautiful stars and other shiny items on the slippers) and let her Uncle Ralph take several pictures of her precious purple slippers. Dr. Rapkin told us he thought we would be here until Monday. We will see about that.

Monday, December 13, 2004 7:04 PM CST

Gwen has had a pretty rough day today. She has been coughing and throwing up. She is pretty weak and tired, due to her counts dropping. But, she is still her sweet, happy self. I had a bowl that I kept trying to get her to use to spit up in, and she kept handing it back to me and cheerfully telling me "Mama spit up in it!"
We keep hoping that she will be able to avoid getting a fever and ending up back in the hospital. Especially since Anna and I are getting ready to go to my sister Esther's wedding in Washington, D.C. this weekend. Ben's brother Ralph will be coming to help Ben out while we're gone. Also, I wouldn't be able to go if not for the help from my Relief Society sisters at church. They have given me and our family so much service; I don't know how we would be getting through this without them!
Tonight, please also say some extra prayers for our friend Hayley Thomson, who is Gwen's age and is at home, in the final stages of her cancer. Her website is www.caringbridge.org/ga/hayley

Friday, December 10, 2004 6:36 PM CST

We are back at home! Gwen did great with round four of chemo, and she also did great with her surgery this morning. She had second catheter put in her chest that is fatter, to allow for the harvest of her stem cells. These are the cells they will give back to her for her bone marrow transplant (also called stem cell rescue). She will go to Eggleston for the harvest in a couple of weeks, as soon as her blood counts start to recover. By the way, this brings the count to FIVE tubes coming out of this poor girl's chest. Fortunately she doesn't seem to mind them (she actually likes her tubes now), and also we have been lucky that Anna takes a very clinical interest in all this, and doesn't think it's wierd!

Thursday, December 9, 2004 8:08 PM CST

Things are looking up! We've had some great news....although the paperwork is still pending, Gwen's Katie Beckett waiver for Medicaid will be approved. That means we can go ahead and do the stem cell harvest and transplant here in Georgia. And staying here in Georgia means that we can stick with her original treatment plan and get two transplants! We are so grateful, it really is a miracle! Thank you so much for all your prayers, they are certainly being heard and answered.
Meanwhile, Gwen is doing great. She is handling this round of chemo well, and has been really cheerful the past two days. The highlight of my day today was when Anna came to visit, Gwen was just waking up from her nap. As soon as she opened her eyes, she yelled "ANNA! ANNA!" and started clapping! They have been very lovey dovey towards each other lately, which always makes a mom smile :)

Tuesday, December 7, 2004 7:58 PM CST

Dear family and friends,
It has been a stressful few days, trying to get things figured out for Gwen's stem cell harvest. We still don't know for sure what is going on. Meanwhile, she has started round four of chemo and she is doing pretty well with it, other than getting cabin fever being stuck in the hospital. Unfortunately, wandering the halls has started losing it's appeal. We will be here until Friday morning, so we better come up with something new and exciting to keep her entertained! She had a CT scan this morning which showed "significant reduction" of her tumor, which is really great news. We will talk to her surgeon, Dr. Pitt, tomorrow, but it sounds like she should be ready for surgery to remove the tumor later this month. So, this is a busy, crazy month for us! Thanks to all of you for your prayers and support!

Friday, December 3, 2004 6:24 PM CST

Well, unbelievably our plans have changed again! Johns Hopkins can't take us next week--I'm not sure why because I havn't been able to get ahold of the coordinator there. So we have no idea what is going on yet. All we know is that Gwen will be admitted for chemotherapy on Monday. Hopefully we will have everything straightened out in the next few days!

Wednesday, December 1, 2004 7:03 PM CST

We have some happy news! Gwen is walking on her own! She finally decided she could do it and has been walking all over by herself.
Some other, not so happy news, is that because Eggleston is not in-network with our insurance, we have to go up to Baltimore for the bone marrow harvest. It will be a two or three week trip, even though the harvest itself will only take a day. They want her up there the day after she is finished with her next round of chemo!
Her chemo was scheduled for tomorrow, but they are pushing it back to Monday. It's only a two-day round, so that means we will probably be heading up to Baltimore next Wednesday!

Monday, November 22, 2004 4:22 PM CST

Gwen's webpage has been at carepages.com but since everyone we know seems to have a caringbridge website, we are making the switch!

Click here to go back to the main page.

----End of History----