Monday, September 18, 2006 9:26 PM CDT

Well, I should know better than to announce that we have no doctor visits for 2 weeks without knocking on wood or my head or something. Catie's had a cold for a couple of weeks and it's decided to settle in her chest. That's earned her an antibiotic, cough medicine (that's a fun battle), and breathing treatments. She's thrown up a couple of times today which is kind of random, but I'm thinking she's had a lot of drainage that's made her tummy kind of yucky. Her highlight of the day was tonight when I was cleaning out her meds box(IV tubing, saline flushes, etc. from rougher chemo days when she came home on fluids), and she got to keep all the stuff that was past its expiration date to play doctor with her babies. It was like Christmas for her, and trust me, her babies are resting well doctored tonight.

My heart is heavy tonight for some kids fighting some really tough battles... some of which it looks will probably not be won this side of Heaven. I won't post sites here as I don't know them personally, but our hearts ache for their families... I cannot even begin to imagine, and quite frankly, my most earnest prayer is that I never have to. Just know that there are people suffering through the unimaginable tonight and keep them in your prayers.

For now... let's do some more Disney pics.


Playing in the huge dressup closet in the magic castle at GKTW, Catie found this and dressed up as Minnie minus the ears.


Getting ready to feed the dolhpins at Sea World. STINKY fish!!


Ok, so this is NOT my best camera work, but I had to keep the picture none the less. This is Catie getting off her very 1st roller coaster, The Shamu Express (I think that's the name of it). Thank goodness I was pregnant, so I didn't have to ride -- I hate the things! It was faster than I thought and I was nervous for her as I watched. She gave me the thumbs up coming off and told me that it was fun and scary.


Ok, do you remember me telling you that it was ALL about the characters?


I wasn't kidding!


Honest...


You only think I'm done...


And I am for now... But trust me, there are more where those came from...

We hope you are well,
Tre', Jenny, and Catie

Thursday, September 14, 2006 8:44 PM CDT

***************** If your child is or was a patient of Dr. Mazewski or Dr. Janss, please e-mail me (jencarroll@hotmail.com) as we are doing something that you might be interested in being a part of. **************

***************** I have raffle tickets benefiting the Lighthouse Family Retreat if you are interested in purchasing one. They are $20 and the prize is a 6 night/7day stay at a 4 bedroom cottage in Watercolor, FL valued at $3,600. E-mail me pretty quickly if you're interested in purchasing a ticket. **********************************

We are home and, except for speech this morning and a quick grocery trip, we have been home ALL day!! We needed that. Yesterday with Dr. Claire and Dr. Bussey went GREAT... completely routine, which is the way we like it. I was glad we had an appointment as Catie's cough has sounded kind of ick, so it was good to have Dr. Claire listen to her. She even told us we don't have to have labs done until we go back to Atlanta in 2 weeks as long as we don't see too much bruising, etc. WooHoo... 2 whole weeks off from doctors!!!!!! That doesn't happen too often. When we are back up in 2 weeks, Catie will have her MRI of the brain and spine -- it's scheduled for the morning of Sept. 29 and we definitely welcome your prayers.

Since we've returned from Disney, I've been to the Quiet Heroes Luncheon where I got to visit w/ lots of cancer mom buddies. We enjoyed an amazing lunch hosted by Chris Glavine and coordinated by Kristin Connor, (/ga/brandonconnor). Last year the luncheon raised over $100,000 and we're hoping it raised even more this year. After the luncheon (where we had so much fun feeling girly and pampered and all that good stuff) several of us headed to, where else? go SHOPPING!!!! We hit Ikia (did I spell that right?) and Atlantic Station. It really was great to visit and catch up with ladies who I don't get to see nearly often enough, but love dearly. We also had the chance to meet some new folks. I have several new websites I want to share with you, but I don't have them all right here with me, so I'm going to wait until I can do them all at the same time. Several of us stayed the night (thanks to travel planner extroadinaire (I know I spelled that wrong, but I'm too tired to go grab a dictionary right now) D D Dixon (/ga/marygrace)), stayed up WAY past our bedtime (or mine at least), and shared breakfast before heading home. It was a great weekend.

Now... more Disney pictures. I'm going to give them too you a few at a time over a few days so that I don't overload you. These are from our first couple of days.


Traveling like a champ!


First merry-go-round ride at Give Kids the World .


First ice cream cone at Give Kids the World (the ice cream parlor is open from 9AM-9PM so you really can have ice cream for breakfast if you want).


I love this picture. This is what I call Catie's Mamanon look. (Mamanon is one of Catie's great-grandmothers. She (and we) are lucky enough to have all 4 of her great-grandmothers with us. She loves them!!)


Waiting for a show at Disney with Daddy.


Have 3-D glasses... will watch show and reach out for things that aren't really there!! She loved this -- and laughed so hard all the way through.

More pictures to come (way more than you want =). I can't say enough good things about Give Kids the World and Make A Wish . They were truly amazing and gave our family the vacation of a lifetime. We are so grateful! More to come!

One last thing. I have no doubt that lots of folks who visit here also visit Kendrie's site (and if you're like me, laugh your tail off at the hysterical stories her mom, Kristie shares there). But if you don't, you might want to go by and visit. Kendrie is doing great right now, but you see, there family was dealt a double decker "crap sandwich." Kendrie's dad was diagnosed with cancer 6 months before Kendrie. He was in remission and going through a lot of reconstructive work to repair the damage the cancer did when they discovered that his cancer had returned. Off to Seattle he had to go for a special kind of radiation (you should really read all of this in Kendrie's journal history to get the whole, true and accurate story). They have just learned that even though he has been suffering the horrible effects of radiation (involving WAY more pain than I ever care to experience) his tumor has not changed. The feel it is probably dormant, but it is still showing up on scans. So... they could definitely use some encouragement as this is beyond frustrating, especially considering all of the side effects that Blaine is having to deal with.

Thanks for checking in,
Jenny

Tuesday, 9/12/06, 2:15 PM

I know, I know, I promised more updates on Disney. I've been trying to find a good chunk of time and do a good update, not a rushed one and it just hasn't happened. Right now, we're headed out to Atlanta for a follow-up w/ Catie's general surgeon and a check-in with Dr. Claire. I PROMISE to update when we get back home. For now, we're doing good. Catie's battling a bit of a cough, but seems to be feeling ok. We also had our mid-way ultrasound (baby's due 2/5) yesterday and so far everything is looking good! The baby (we're not finding out what we're having) is growing like crazy and is already over 10 oz.

We'll update more when we get home!!
Jenny

***************** If your child is or was a patient of Dr. Mazewski or Dr. Janss, please e-mail me (jencarroll@hotmail.com) as we are doing something that you might be interested in being a part of. **************

***************** I have raffle tickets benefitting the Lighthouse Family Retreat if you are interested in purchasing one. They are $20 and the prize is a 6 night/7day stay at a 4 bedroom cottage in Watercolor, FL valued at $3,600. E-mail me if you're interested in purchasing a ticket. **********************************

Thursday, September 7, 2006 8:51 PM CDT
We are home and oh what a marvelous time we had at Disney World and Give Kids the World!! Catie did an awesome job and her energy level was great. It was all about the characters this week. You hear all the talk about Disney being a magical place, and when you take a child this age you see why. We'll probably do a day by day account of our trip here over the next couple of weeks. I pity your for the pictures you're going to have to endure, but hey, don't say we didn't warn you!!

Here are a few pics from throughout our trip.


The three of us with Minnie, Chip and Dale, and Wendy (from Peter Pan)


Catie getting tucked in by Mayor Clayton, mayor of Give Kids the World Village


It's Belle!!!!


Catie with Jasmine, Alladin, and the Genie

And now, we've saved the best for last.

We had the best possible end to our trip. We talked to Dr. Claire within an hour of getting home. She told us that the mass they removed from Catie's neck was benign. It was a histiocytic lesion. There is definitely something unusual about the tissue they removed and that is part of what has taken so long to get the full report. The tissue was looked at by all 3 pathologists at Scottish Rite, all 3 pathologists at Egleston, and a specialist at Emory. The thing they were trying to rule out was a low-grade sarcoma (malignancy of soft tissue). They feel they have done this. The cells were mainly histiocytes which are some kind of immune system cell. We will continue to monitor the site each time Catie gets her MRI of the brain and spine. They'll just get a good look at the neck each time was well now. We are so thankful for this answer to prayer. Dr. Claire said tonight that this news was better than she thought it was going to be, so that is awesome!! Thank you so very much for all of your prayers.

We promise to update more this week and let you see glimpses of all of the smiles from our trip.

Thanks for checking in!!
Jenny

Friday, September 1, 2006 8:46 PM CDT

There's a whole lot of packing going on. Still no news on pathology. Here are some pics -- had to empty the picture card so we have plenty of room for pictures with Mickey!!


Catie on her 1st Day of school this year


Catie with her buddy Trip on the 1st day


Catie w/ her cousin Claire enjoying a cupcake
Happy 1st birthday to Claire today!!


We're off to wish upon a star! Thanks Make-A-Wish!

We'll update when we get home!
Tre', Jenny, and Catie

Monday, August 28, 2006 1:29 PM CDT

We talked to Dr. Claire this morning, and we're still not sure what it is that they took out. This is what we know. It is not recurrent tumor. It is not leukemia. It is not Lymphoma. These are all good things. It looks to be some sort of low grade lesion (defined as an area of abnormal tissue change). Tumors are typically grade I-IV. Dr. Claire said that if you graded this lesion it would be around 0.25-0.3, not even Grade I, so this is good. They cannot rule out that it is malignant yet, but they don't think that it is. They've sent the tissue samples to a specialist at Emory and we hope to have final word from her soon. Dr. Claire also warned that the final word may not give us any more info. than we have right now. She doesn't think that treatment will be necessary, just monitoring with scans.

So here we are. Leave it to Catie to be complicated!! We'll update more as we get more info.!!
Jenny

Sunday, August 27, 2006 8:06 PM CDT

Hi guys!
Sorry we haven't updated all week. I was planning on waiting to update when we got the final report, but we haven't heard yet. I called on Friday, but I think it was a pretty crazy day at the clinic. I'll call again tomorrow to see what the news is. For now, we're going with the "no news is good news" train of thought.

Catie is feeling well. The tegaderm is still on her neck, but I'm thinking it's probably coming off tomorrow. The stitches are dissolvable, so we don't have to dread getting those out (thank goodness). She's feeling good and hasn't even needed pain meds (not even regular Tylenol) since Wed. afternoon. She went back to preschool on Friday and is looking forward to being there again in the morning. We were hoping to start chemo Friday night, but her platelets (which were 124 last Friday) had dropped to 70, so no dice there. Her white count was also lower than it has been on this chemo -- down to 2.0 (still much better than on the other chemos she's been on). I debated letting her go to school, but her ANC is still holding at 1000, so we're going to let her go.

Catie's Make-A-Wish trip is sneaking up on us! We leave on Saturday and she is so excited to be going to Disney World! I can't wait to see her face as she meets the characters and rides the rides!! It should be a really great time.

We will update as soon as we have the final path report from surgery last week. Hopefully that will be soon!!

Thanks for checking in,
Jenny

Monday, August 21, 2006 5:46 PM CDT

Hi guys! I really did post an update this morning, but didn't check to be sure it was there. It must have disappeared into cyberspace. Sorry about that.

That might be a good thing though as we have a little more info. now. Things went well this morning. We are HOME and Catie is hanging in there. She's definitely feeling puny, a little moreso than I expected, but I think it's probably more from all the drugs she's had today than from the incision. Her neck seems a little stiff, but she's sitting on the couch watching a movie right now.

The machine that processes the tissue for the frozen sample was messed up today. That is where the prelim. reports usually come from. Dr. Bussey said from looking at what he took out, he could not tell what it was. There was a good bit of old blood and whatever was there kind of fell apart when he started taking it out. He really rode the fence between it could be a lymph node or it could be something else when he was talking to us. That made us a little uneasy as we were hoping for something a little more definitive today. We called and left a message w/ Dr. Claire's office. She called us back (of course while we were packing up and the only time we weren't right by the phone) and left a message for us. She said that she didn't have a lot more info., but that she talked with the pathologist. He said they were able to look at a small sample under the microscope. There were not a lot of cells in the sample that they looked at. This is good -- you don't want lots and lots of cells (that have grown more quickly than they should have). The cells that were there looked ok. She also mentioned the blood and said that this would explain the growth of the "mass" (that's what they called it today -- a neck mass -- I'm not a big fan of the word mass (takes me back to original diagnosis), but it's better than calling it that thing). So, we were very glad to hear from Dr. Claire. The sample they looked at was just one small piece of what they took out, so we will look forward to the full report to breathe that final sigh of relief. We are thankful for the info. we were able to learn today and we are thankful that nothing worrisome has shown up yet.

Thank you so much for checking in on us today. Your messages have been very encouraging and it is so helpful to be reminded that people are praying for Catie. Thank you. There are 2 others who could really use your prayers right now. Joshua (/visit/joshuametz) learned recently that his tumor has progressed. He has 2 very important doctor's appt. this week and decisions regarding his treatment will be made. Also, Caleb, a fellow medullo patient battling relapse and hitting all kinds of complications. He is on the vent in PICU right now and could really use your prayers. His site is at www.carepages.com . When you get there, click sign in or sign up. You just have to register quickly to get to his page. Once you register you will be taken to a page that says enter care page name. Enter calebanthonyethridge and click the right button. You may have to click on his page name on the next page and then you should be at his page. I know it takes a little extra work to get registered for a different site, but it would mean a lot to his family to know you were thinking of and praying for them.

Thanks for checking in. We'll update more soon.
Love,
Jenny

Friday, August 18, 2006 4:03 PM CDT

Hi guys! We have had two LONG days. Nothing bad about them just long. Yesterday we bounced from clinic to EKG/ECHO back to clinic. That kept us busy from 10:45 till 5:15 or so. Today we got to radiology check-in a little before 7:00 and we did not get back to the Ronald McDonald House until 3:15. Today we knocked out the CT of her neck and chest, a good visit w/ Dr. Claire, and a pre-op appt. Her surgery (to remove the lymph node or whatever) is on Monday morning 8:00. Dr. Bussey will do it, it will be out-patient, and hopefully we can even head home on Monday. Catie knows whats going on and seems good with it all.

So, we'll hang out in Atlanta for the weekend. I'm hoping there are some reservations to the aquarium available. We shall see!

I have several e-mails to respond to. I should be able to get to them over the weekend. Thanks for checking in on us. We'll update on Monday.
Love,
Jenny

Thursday, August 17, 2006 6:06 PM CDT

Hi guys! Just checking in again. We took a look at what we think is a cyst on Catie's neck on the MRI from a few weeks ago. It's high up enough that it showed up on the scan. The cyst (or whatever) has fluid in the center and then is more solid around that. Dr. Claire said it is not uncommon for a cyst to arise in this area. That said, she still wants to remove it to be sure. Tomorrow morning Catie will have a CT and then if her general surgeon, Dr. Bussy (who placed her port almost 3 years ago), will hopefully have time to see us. He has a full schedule tomorrow, but knows we would really like to see him tomorrow. We are hopeful that if we are able to see him tomorrow Catie will be on his surgery schedule on Monday. If we are not able to see him tomorrow, we will see him Monday afternoon and then schedule surgery from there. On the MRI it was measuring 2.2 cm. Now it is 4 1/2 to 5 cm. We will update sometime tomorrow after we see the scan and know what Catie's schedule will be. We are fairly confindent that this is nothing, but we defnitely welcome your prayers for something easy to remove and something that is in no way dangerous for Catie.
Thanks for checking in, gotta go check on Ms. Priss.

Love,
Jenny

Thursday, August 17 9:30 AM

Hi guys! We're in Atlanta. Catie had an AWESOME first day at school. More on that and pics from it when we get home. Dr. Claire has checked Catie out and says that the knot in her neck is definitely larger -- about double what it was 2 and 1/2 weeks ago. She says it feels a little softer than a lymph node, but a little firmer than a cyst. So we're going to get a CT scan of it and probably go ahead and do a surgical consult. Echo and EKG today too. We'll update when we have results. Thanks for checking in.
Jenny
P.S. Dad, sorry we didn't call to let you know when we were coming -- didn't get in till 9:30 last night. Love you.



Tuesday, August 15 9:30 AMHoly cow!! An update 2 days in a row. You guys aren't going to know what to think!! Just a quick note to let you know that we talked to Dr. Claire this morning about the lymph node, cyst, whatever it is on her neck. She wants to see Catie this week and have an ultrasound done. It will be on Thursday or Friday, just depends on radiology. The ultrasound will let us know if we need to do more tests. I'm glad we're going. I hate to make the drive, but I'm glad we're checking it out. Dr. Claire is still wondering if it might be a cyst b/c of the way it feels. She doesn't feel like it is an infected lymph node b/c it's not tender. We'll update you when we have more info. For now, we're getting ready for the first day of school tomorrow!! =)
Jenny

Monday, August 14, 2006 8:33 PM CDT
Hi guys! Just checking in. Catie had labs today and her counts really looked good. Her white count was 3.9 (low end of normal is 4.5) and her platelets were holding nicely at 124 (low end of normal is 150), so we'll take that!! I think her body has finally adjusted to this chemo. With this one, that typically happens. I think it took her longer b/c at the beginning we kept upping her dose b/c she was handling it so well. Now that we dropped the dose back a little and she's been there for 3 months, her body has adjusted and her counts aren't fluctuating so much. The lymph node (or whatever it is) is still enlarged. We marked and measured it tonight and it is about 3.5 cm by 4.5 cm. It's the first time we've actually pulled out the measuring tape and measured it, and I was a little surprised that it was that big. I wish that I had actually measured it last week so that I had something concrete to compare it too. The doc she saw last week (her pediatrician was out of town) estimated that it was about 3 cm. I'm going to call Atlanta tomorrow and just update them with what we measured tonight. Dr. Claire said to let her know if it grew.

We had QUITE the pleasant surprise this afternoon as we were leaving downtown Savannah. I saw a familiar face on the corner we were passing and quickly pulled over. That familiar face was none other than Mr. Danny from Lighthouse (the hubby of Mrs. Vicki in the pic at the top of the page with Catie) and he was out running. He was just in town over night, but how nice it was to get to visit with him for a couple of minutes. It had us smiling the rest of the night. As Tre' and I were talking tonight we wondered at the chances of us crossing at that same intersection at exactly the same time. It made our day and brought a big Lighthouse smile. We hope the rest of your trip goes well Mr. Danny (and Mrs. Vicki he promised he wasn't headed to Lady and Sons until you're there too=) !!)

We were downtown b/c Tre' was taking Catie shopping for her outfit for her first day of school. We TOTALLY stole this tradition from our good friends, but it really is a great tradition. I tagged along today, but Catie and her Daddy did most of the picking out themselves. She'll be wearing a cute turquoise striped dress with a small sequined heart on it as she heads of to school on Wednesday. She'll be going three days a week this year and we're excited that she might be in a class with two of her good buddies. We're also in the midst of getting all of her therapies set up for fall. She has two evaluations Wed. afternoon after school, so I'm expecting one tired girl Wed. night. We're excited for the chance for the school year to start.

We'll update after school sometime on Wed. Hope your week is going well!!

Love,
Tre', Jenny, and especially Catie

Thursday, August 10, 2006 1:12 PM CDT

Ok-- we haven't fallen off the face of the earth!! We've just been trying to get things at home caught back up after being gone so much. I've decided that you're never caught up, so I thought I'd give you a long overdue update.

First, I wanted to let you know about a friend of ours who could use some extra prayers. Joshua is a friend of ours from the clinic. His family was also with us at Lighthouse a couple of weeks ago. He had a scan on Monday that showed tumor progression. He has an inoperable brain tumor and is, unfortunately will have to undergo more treatment. Please pray for Joshua, his family, and his medical team as they try to figure out the treatment that will be most effective against his tumor and will cause the least amount of problems and discomfort for Joshua.

************************************************************************************************************************

Lighthouse was truly amazing. Our family needed that time away from everything and it was so nice to just play and have fun. The time with other famlies was priceless and all the volunteers were amazing. Each day started with morning watch on the beach. We sang choruses together and received a brief message on the truth for the day. This was always a special (and hot!) time -- a great way to start they day. Next the kids headed to flip flop (which for Catie usually meant the pool) with our family partners and the parents headed to Common Grounds. Common Grounds gave each family time to share their story. I can't explain to you how healing this is. We've told Catie's story a hundred times, but it was so good to share it with other families and to hear them share their story. Hearing your very own fears and worries come out of the mouths of other people reminds you that you're not crazy and that other people share those same worries. The families there were amazing and each story and their struggles were different... but so much of what we feel is the same.
After this time, we hit the beach for Beach Olympics. For Catie, this meant playing in the sand with Mrs. Vicki. Ms. Priss was not much for the heat, so she staked out her spot under and umbrella with her sand toys. Next was lunch and then, for us, naptime. By this time we were pooped and we crashed for a couple of hours before hitting the pool (again for Catie) or the beach (once the flag finally changed to yellow). Dinner was next and was always a special affair. There was a parents' night out that was awesome, a luau, a picnic on the beach (complete with singing and entertainment from our group afterwards), and a talent show. The last morning we enjoyed a slideshow from the week.

There is no way to convey all we experienced in words or a short paragraph, so we'll share some more pictures. Sorry to those on dial up-- just bear with us.

Catie's favorite spot -- I'm surprised she doesn't still look like a prune from all the time she spent in the water.


Doing tricks with Daddy


4 Survivors -- Mary Grace (Germ Cell Tumor), Summer (AML), Catie, and Hannah (ALL) -- Catie and Hannah are still on treatment


Are they ever going to change the flag from red to yellow so we can get in the ocean?


Playing in the sand


Sand time with Mary Grace and Mrs. Vicki


Trying to blow a bubble


Catie and Ms. Melinda (founder of the Lighthouse) at the Luau


Catie and Daddy at the Luau


Catie and Mom doing the train at the Luau


YMCA with Daddy


4 survivors from our house all ready for the talent show


Catie with family partners Ms. Vicki and Nicole (my camera lens fogged up in the humidity)


I hope your computer hasn't crashed from all the pictures!! We just wanted you to see how much fun Lighthouse is.

On the medical front, Catie is doing well. She did chemo last week and counts were still holding well on Monday. We'll check them again this Monday. We're still watching the knot on her neck and we're still not sure if it's a lymph node or a ganglion cyst. I'm ready for it to just go away or to get it out. I don't like something being there when I don't know what it is. She's feeling great and her energy level has seemed better this round of chemo. We head back to Atlanta on the 28th for an EKG and an Echo (routine) and to check in with Dr. Claire. Then we get to go to DISNEY and Give Kids the World for Catie's Wish Trip. We can't wait (but do hope it cools off a little by then). Her next MRI will be on Sept. 27.

Well - how's that for a marathon update? I'm about to copy it in case it disappears into thin air!!
Thanks for checking in!
Tre', Jenny, and Catie

Thursday, August 3, 2006 7:00 AM

Good morning! I know we've promised you a Lighthouse update, and it's coming, just give us a few more days. Aunt Nik Nik and Uncle D are in town and we're headed to Tybee for the weekend. We'll update when get home -- trust me there are days and days of pictures to share!! =)
Have a great weekend!
Jenny

Monday, July 31, 2006 9:23 PM CDT
Hi Guys! We are home after being gone for 9 days and I can't wait to lay my head down on my pillow in my own bed! But... I couldn't without first letting you know about our day...

The spot that was lighting up a few weeks ago is still lighting up. It has not changed, is no bigger, and is no denser... All good news. What is it? We don't know for sure. Dr. Claire had a chance to sit down and go over the scan with the radiologist and with Catie's neurosurgeon, Dr. Hudgins. The are not overly concerned at this point as what is there does not look malignant in any way. It could be radiation changes (this is what we want -- it just makes things light up differently on the scan), it could be scar tissue, it could be a benign tumor of some sort. All of these are better options than medulloblastoma, but of course we're praying that it is no kind of tumor, just radiation changes and/or that it disappears before Catie's next scan. There is the off-chance that it could be malignant, so we will rescan in 8 weeks, but Dr. Claire said several times that it does not look like medullo, it does not look like what we have seen before in Catie, and it does not appear to have any malignant characteristics -- all VERY good!

Catie looked great today, got lots of comments on her tan, and Dr. Claire was pleased with what she saw. She felt of the swollen lymph node and said she isn't sure if it is a lymph node or a ganglion cyst. She had a lymph node "specialist" come in and check it out also. They both agreed it is not concerning at this point b/c you can move it around, it is not hard, and has not grown a great deal. We are to check it every few days to be sure it doesn't change. Catie's counts were good, so we start chemo tonight. I'm so thankful that we were able to let her wait until after our trip to start chemo as it was so nice not to have the added chemo fatigue.

Now for the best news of the day!!!!!!!! The spot that has been on Catie's scan from day one is -- are you ready for this -- it is GONE!!!!!!!!!! It has been in her head as long as we've been taking pictures of that noggin, and it is now gone!!!! Praise God from whom all blessings flow!!! Dr. Claire feels the radiation has continued to work on it all this time until it just disappeared. If you've followed Catie for very long, you know that her tumor has mainly shown up (and at times, only shown up) on the diffusion slides. Today the words that came out of Dr. Claire's mouth were, "The diffusion slides are CLEAN!!!!!" I had to have her repeat it 3-4 times b/c I just liked the way that sounded. Now obviously, her whole scan is not totally clear b/c of the "other" spot we're watching, but I can't even begin to tell you how uplifting it was to hear her say the spot that has been in our baby's head for at least 3 years is now gone. So now, we'll focus our prayers on the other spot and pray that Dr. Claire's worry meter is accurate as it's now down to a 1 on a scale of 1-10.

I want to share all of Lighthouse with you, but this head is headed to bed!! I'll leave a few pictures with you, and tell you all about it later!


Tre', Catie, and I with Vick and Danny Dukes. They and our other family partner, Nicole, took amazing care of us all week. Danny's music ministered to us each morning and we're so thankful we got the chance to meet them. We can't wait to see you again.


Tre', Catie, and I on the night of the Luau.


Catie and Mary Grace playing in the sand


My first time using a Gameboy -- and I could do it!!

Love to all,
Tre', Jenny, and Catie

Monday, July 31, 2006 2:30 PM CDT

It was a good day for the Wilkin's family. Jenny will do a complete update tonight if possible. It is 3:30 and they are just leaving Atlanta headed home!

Sunday, July 30, 2006 9:12 AM CDT

What an amazing week we had at the Lighthouse. The week was FULL of playing in the sand and laughing in the (HOT) sun! We crammed in lots of ocean and pool time and I have to admit, that we were all pretty exhausted upon arriving at the RMcD House last night. We crashed around 8:00 -- all 3 of us. Our family partners, Vicki, Danny, and Nicole were amazing and Catie fell in love with them. If Mrs. Vicki was anywhere in the vicinity, Catie wanted to be in her lap. Danny took lots of "abuse" in the pool getting dunked by Catie and Mary Grace and built awesome creatures in the sand. The worship time each day was so uplifting and it was great to be surrounded by friends, both old and new. It's hard to truly share about our week without pictures, so we'll wait to do the full update when we get home and I can upload pictures.

Today is a "take it easy" day as we await Catie's MRI tomorrow. Thank you to all of you who have let us know you're praying. That is exactly what we need right now. The scan is at 11:00, we report at 10:00. It should be interesting since the first words out of Catie's mouth every day for the last two weeks have been, "Mom, I'm ready to go eat breakfast." She generally does pretty well though, and gets the whole sedation thing, so hopefully that will be the case tomorrow as well. We will head over to see Dr. Claire at 1:00 and we'll share the news with you as soon as we are able to. Thanks for checking in, and especially for praying!
Love,
Tre', Jenny, and Catie

Sunday, July 23, 2006 8:12 AM CDT

Our family room is covered with stacks of clothes waiting to be put in suitcases as we get ready to leave for Lighthouse in a little while. Catie is so ready to go and is telling everyone she is going to the beach and to Lighthouse. She has grown up so much since we last went 2 years ago! We are looking forward to down time, beach, time, pool time, and spending time with friends, both old and new. Our only disappointment about this week is that our good friend John Michael and his family are not going to be able to go.

Yesterday afternoon we spent some time at the Pineora Go-Kart Track and met some really nice folks who were raising money for Backus. Catie was a little shy, but did wave the green flag to start the race. Thanks for all you guys did -- we hope you raised a ton of money.

We'll be waiting to start chemo until next week. Platelets were above the mark needed to start chemo, but they were still falling. I wish we could go ahead and start, but this way Catie will feel GREAT all week and we won't be giving her chemo to knock her counts right before her MRI. If something needs to be changed about her course of treatment, this should allow it to happen quickly instead of having to wait for her counts to rebound. However, our prayer is that things look FINE on her MRI next Monday (it will be at 11:00 on the 31st) and we'll get the ok to just continue what we're doing. The only other thing medical that's going on is that Catie has a swollen lymph node. No signs of infection or anything, but it's definitely swollen. Both her pediatrician and Dr. Claire assure me that this just happens sometimes. We're to watch it and let them know if it becomes tender, larger, or there is redness around it. I'm praying it just disappears soon and that it's just a normal thing.

Despite the fact that I coat Ms. Priss in SPF 30 every time we walk out the door, she is still brown as toast. Her hair has that sunkissed look and she just looks great. She's feeling well too and for that we're so thankful.

Ok -- I've GOT to go get packing!! We'll update when we can!

Thanks for checking in!
Tre', Jenny, and Catie

P.S. Catherine R. (a.k.a. Catie 2) I did check my e-mail but I didn't see anything. Then I couldn't find your e-mail address! I may not be able to get to a computer for a few days, but I'll check it as soon as I can.

Tuesday, July 18, 2006 8:27 AM CDT

Thank you so much for all of your messages of congratulations! It was so nice to come here and be able to share some purely good news! We are all doing well, Catie is feeling great! The pregnancy is going well, though I am definitely FEELING pregnant!! This is good though as it means the hormones are doing what they're supposed to do.

Catie's platelets continue to hold quite well -- they were 102 yesterday. We will recheck on Friday since we'll be at the beach on Monday. She is set to start her next round of chemo on Monday, counts allowing. She has ANOTHER urinary tract infection. I'm guessing we're doing too much swimming. We're being good about stripping out of the swimsuit as soon as we get out of the water, so I'm hoping this will help. This bug can only be treated w/ Cipro or with IV antibiotics. I'm waiting to hear back from Atlanta on what they want to do. She has no symptoms, thankfully, so it's not slowing her down one bit. As I write this, she's holding Joey (her dog) like a baby and singing Rock A Bye Baby to him. Joey isn't too sure he's liking the rocking, so I think they're moving on to wrestling on the floor!

We'll try to update once more before we leave for Lighthouse. I think we're leaving on Sunday to break the trip up a bit. Please continue to pray for her upcoming scan on July 31. It is vital that this scan be good.
Thanks for checking in -- I'm off to rescue Joey!! =)

Jenny

Monday, July 10, 2006 4:52 PM CDT

**Guestbook is up and running**
Thanks to those who have let me know the guestbook isn't working!! I've let Caringbridge know, so hopefully it will be up and running soon!
Thanks,
Jenny


Hi guys!

I have just gotten back from a great girls' weekend in Atlanta. I sure missed Ms. Catie Bug and Tre', but it was nice to get away and laugh with other ladies. Thanks to Tre' and my mom for holding the fort down and making it so I could go. We girls really had a blast. My new favorite spot is The Sundial at the top of the Peachtree Plaza. They have AMAZING Volcano Cake!

We have some exciting news!!! We are expecting a new addition to our family in early February (sometime around the 6th or the 10th). We are thrilled and Catie is tickled pink. Trust me, tickled pink, not blue. When you ask her what she thinks the baby will be, she says a girl. Then if you say, "but it will be ok if it's a boy, right?" She looks off and then turns back and confidently says, "Girl."
We know she'll be thrilled either way though, and, to be honest, we don't care either way so long as he/she is healthy. Catie has been showing off the ultrasound picture explaining that this is "my baby" and "this around it is Mommy's tummy."

Catie is doing great and platelets were up to 102 today! We'll take that. She's finished her 2nd round of antibiotics for the urinary tract infection. We're waiting on results from the follow up culture, but I'm pretty sure it's going to be clear now. This is a fairly normal week, next week she has swimming lessons (she was holding her head under water --whole head, not just her face -- for 10 seconds at a time), and the following week is Lighthouse. We definitely have a full schedule leading up to her scan on the 31st.

Gotta go finish dinner!!
Love,
Jenny

Thursday, July 6, 2006 7:02 AM CDT

Hi guys! We hope you had a great Independence Day. We spent a few days at Tybee and really had a great time. Catie is SUCH a beach bum. She loves low tide and and looking for shells, hermit crabs, and sting rays -- and she loves high tide when we put her in her life jacket and take her out to jump the waves. I wish you could hear her squeals of delight and laughter. There is no sweeter sound.

She has felt pretty good this week. The week after chemo is usually a super tired week. She has shown some fatigue this week, but it has not been too bad, and I think she is past the worst of it. Her platelets were 80 on Monday (up from 76 last week). I'm not sure what to expect platelet-wise this cycle b/c she started off so low.

We're counting down the days to Lighthouse!!! We leave 2 weeks from Monday and will spend the week with other families facing childhood cancer playing in the sand and laughing in the sun. We were able to go 2 years ago and it was such a restorative and refreshing week.

This week marks 6 month since Catie's most recent surgery and 1 year since her next to the last surgery. It was only this week that I realized that they were almost exactly 6 months apart. It also marks 6 months without a trip to the hospital (PLEASE knock on wood with me). It's been so nice and it's been the closest to normal that Catie has known since diagnosis. We pray that it can continue after her follow up scan.

Speaking of that scan, it is on the schedule. We will go straight to Atlanta from Lighthouse. Her scan will be Monday morning, July 31 at 11:00. We will head straight over to the clinic to see Dr. Claire immediately after the scan.

I guess that's about it for now. Check in on our friend John Michael as he recovers from hip surgery.

Thanks for checking in,
Jenny

Sunday, July 2, 2006 8:32 PM CDT

Hi guys! What a good day we've had. We were able to go to church this morning (which we've missed the last few weeks due to illness or being out of town), all three of us took a nap together this afternoon, we've soaked in just being at home, and Catie got to spend some time in the swimming pool playing with good friends. We are tired tonight, but it is a good tired.

We are doing pretty well with the waiting until the next scan. I still don't have the exact date yet, but it looks like it will be the week of July 30. If we've done anything in the last year, we've gotten better at waiting and the unknown. For now, we're living life and holding on to Dr. Claire's 2 on the worry scale. It's funny though how when you least expect it, the reality of everything can sneak in. For me, it's always during the singing in a worship service. I can be absolutely fine and we can start singing a hymn and the tears are suddenly at the corners of my eyes. Today in church, the choir and a trio sang a song called, "I Wish I Could Have Been There." It was an upbeat, cheerful, clap your hands even if your Baptist (we are, so I can say that) kind of song. One or 2 lines talked about a healing Jesus performed in His time on Earth, and that was all it took... there were those tears... Please let Catie's story get to be a story with an ending like that, and let me be able to stand and say that I was there...

The closing hymn was "Because He Lives." We only sang the chorus of it, but I have a favorite verse... another one that sends me to a puddle big time. It makes me think of Catie so much because of how young she was when we learned of her tumor and because of the uncertain days we've faced with her...

How sweet to hold a newborn baby,
and feel the pride and joy He gives;
but greater still the calm assurance,
this child can face uncertain days because He lives.
Because He lives, I can face tomorrow;
because He lives, all fear is gone;
because I know He holds the future
and life is worth the living just because He lives.


We'll update when we get back from the beach.
Tre', Jenny, and Catie

Friday, June 30, 2006 3:30 PM

**********URGENT NEED**********
There is an urgent and critical need for blood product donations, particularly platelets, at this time. Please consider donating if you are healthy and able. Catie and so many other cancer patients are alive because of the generous donations of others. Please call you local American Red Cross and set up a time to donate. If you live in the Savannah area and would like to donate platelets, please call Thelma (w/ the Red Cross) at (912)961-5765. Donations can also be made at the Savannah Community Blood Bank. You can save a life.
Thanks,
Jenny

Wednesday, June 28, 2006 8:38 PM CDT

If you were in the car with me today, you would have heard Catie, in her sweet, quite southern, 3 year old voice singing, "Turn your eyes upon Jesus; Look full in His wonderful face; and the things of earth will grow strangely dim; in the light of His glory and grace." One of my very favorite hymns, and now one of hers too.

If you were in the car with the three of us tonight, you would have heard Catie, in that same sweet, quite southern, 3 year old voice belting out a favorite Camp Sunshine tune... "Love is taller than a mountain; love is deeper than the ocean; love is wider than the miles between you and me-ee. Love is stronger than a freight train; love is faster than a jet plane; love is bigger than the troubles we'll ever see-ee."

Oh how sweet it is... that sweet little voice sing words so true.

We've been lying low, catching up on down time we've missed in the last month. Catie started chemo on Monday. Platelets had to be 75 to start and hers were 76. We'll be watching them extra closely since she's starting so low. Here's hoping if she needs a transfusion, she needs it before we head to Lighthouse in a few weeks. Ohhhh... how I can't wait to "Come on down, come on over, come on into the Lighthouse!!!"

We'll write more soon. I owe some e-mails -- I'll be working on that and tying up loose ends from the golf tournament tomorrow.

Thanks for checking in!
Jenny

Friday, June 23, 2006 11:45 PM

Hi all -- we are home sweet home.
Catie was such a trooper today. I woke her up early, early to eat a little something b/c she couldn't eat after 7:00 AM. She really did well. Someone asked her what happens when she gets her pictures done and she said, "You go through that little door and into that little room and then they give you sleepy medicine and you go to sleep." I'm so used to seeing her do it that sometimes I forget how amazing it is that a 3 and 1/2 year old does this so willingly and easily. I am so thankful that she does...

There is a "spot" of concern (I'm really starting to hate the word "spot"). It is at the same place we've been watching all along. It looked a little bigger today on one of the slides. It could have looked bigger purely b/c of the angle of the slice of the picture. We can't tell for sure at this point. It wasn't on the diffusion slides where we normally see stuff best on Catie, it was one of the post contrast slides. What we're looking at is about 5-6 mm. Dr. Claire wants to rescan in 4-6 weeks. Before we left, I asked her how concerned she was on a scale of 1-10. Her answer was 2. I can live with a 2 for 4-6 weeks. I'm just thankful her answer wasn't 6 or 8 or 9. 2 I can live with. Not as good as I wanted today to be, but still... a 2... Please join us in praying that we scan at the right time, we get the information we need, and that when that scan is done, our worry factor can go even lower, like 1 or even 0...

Otherwise, Catie looked great. Dr. Claire was very pleased. Her audiogram was also stable. Her UTI is improving as there were no white cells in her urine today and only a trace amount of blood. Platelets were up to 64 today, so we're hopeful we can start chemo on Monday.

I wish you could have seen Ms. Priss when she woke up today. She was absolutely starving (it was 3:30 PM). She had placed her "order" for her menu before falling asleep, so we filled it while she snoozing. As soon as she woke up, she was asking -- in a slurred voice, I might add -- for her Rice Krispy Treat and her hamburger. Within 20 minutes she had polished off both of those, a pack of Mini M&Ms, half a bottle of Sunny D and was asking for more. She was one hungry girl!

Thank you so much for checking in and for your prayers. We ask that you increase those prayers even more in the month ahead.

We'll update again in a few days.

Tre', Jenny, and Catie

Wednesday, June 21, 2006 1:27 PM CDT
Hi guys -- this will be quick (imagine that) as we just found out we're heading to Atlanta a little early. Since her platelets we're still falling on Monday, we're going to be at the clinic by 9:00 in the morning in case she needs a transfusion. Hopefully she won't, but if she does, we would need to do it tomorrow as our schedule and the clinic's schedule won't allow for it on Friday. So it's a quick load or two of clothes and we're off. Tomorrow we'll be labs at (9:00). I'm thinking she won't need platelets since we're changing schedules, leaving early, etc., but you can bet she'd definitely need them if we didn't plan for it!! Murphy's Law! Audiogram will be at 3:30.

Friday is the big day w/ scans at 1:00. I hope she doesn't wake up too hungry!! I may wake her up for a snack during the night to hold her over. We should know results Friday afternoon. We're praying for results as good or better than last time... Thanks for praying with us. We'll update as soon as we can after we get the report.

The golf tournament really was a great success!! Thanks to all who supported it and all who helped out. I don't have all the money in yet, but it looks like we're going to net around $35,000!! All for childhood cancer research!!! We'll give you an update when we've done the final count!

Now, for the pictures. I didn't get any great ones of her in her flower girl get up ... Her dress was gorgeous. I'm hoping some other folks got some good shots. The others pics are from the last week as well.


Catie and Mary Grace (/ga/marygrace) at Tybee


Testing that tongue at the bridesmaids' dinner


My very first haircut, EVER!!!!! I was so excited, but not quite sure what to think once I got there... held Mom's hand the whole time.


What do you think of my trim?


The rehearsal dinner was great -- especially the oranges (can you see all the orange rind on her plate?)


Mom, Uncle John, and Aunt Nik Nik on the big day


Blowing bubbles at the reception


My great Granny made my dress

There you go! The promised pictures!!!

We'll update soon!!

Love to all,
Jenny

P.S. Her urine culture finally grew out... E Coli ... Yuck!! She's still on an antibiotic. The blood in her urine is gone, but there were still a lot of white cells in it on Monday.

Sunday, June 18, 2006 8:13 AM CDT

Hi all! No pics yet, but I promise to put some up after the tournament.

Catie was absolutely beautiful and absolutely chicken yesterday!! She didn't make it down the aisle, but boy did she have fun at the reception! The crowd just proved to much and that's ok -- the wedding was truly beautiful and we got 'em hitched! We had a full weekend full of family and friends and it was so nice to see so many people we love in one place.

The trip was not uneventful on the medical side. We spent Friday afternoon in the ER. Catie continued to have blood in her urine and it was getting worse. We were worried that her platelets might be lower and they had to do another culture b/c the first hadn't grown. They also wanted to rule out a condition that can result from use of Cytoxan, a chemo Catie has had in the past. Her white count in her urine was 25 (normal is 0-2) so they feel confidant that it is a urinary tract infection. They switched her antibiotic b/c the first one they put her on is the one she's taken every weekend since she was diagnosed. They felt her body may have built up a resistance to that antibiotic. We'll have her checked again tomorrow at her pediatrian's office.

We're crazy getting things ready for the golf tournament tomorrow. We'll update by Tuesday!

Thanks for checking in!!
Jenny

Wednesday, June 14, 2006 9:21 PM CDT

Hi guys!
Just a quick note before we head to the wedding tomorrow! We had a grand time at the beach with Mary Grace! The girls had fun and it was a really nice couple days.

Catie now has a urinary tract infection. No fever (pray it stays that way), but she had some blood in her urine and was having a super hard time making it to the restroom yesterday and today. A urine check showed a lot of white cells in her urine and some blood. So we've started an antibiotic. She has also just started with a cough. It makes me a little nervous about leaving tomorrow as we'll be away from the hospitals we know so well. Please join us in praying that all this is quick stuff that won't make her feel bad or cause temps and that she's in tip top shape for Saturday. Even more than that, please pray that next week scans are nothing short of beautiful!!

We'll update if anything new comes up or after the wedding with lots of pics!!

Hugs to all,
Jenny

Friday, June 9, 2006 8:28 PM CDT

Well, this little bug made for an interesting week. All 3 of us ended up getting it, but neither Tre' nor I had it as bad as Catie. We had less severe cases and it was quick. With Catie, it just lingered. She just wouldn't eat and was exhausted w/ no energy. She was very clingy and just didn't feel well. We missed all of VBS (thank goodness I was supposed to only help in a class and not teach it) b/c she just needed me. We got in lots of snuggle time and far too much tv. Yesterday I was starting to get worried because she seemed lethargic and was so wobbly that she almost had to be holding onto something to walk. Now, some of you know that her only symptom of tumor was lack of balance and trunk strength -- so symptoms like those I saw yesterday push me over the edge. Even though I knew that she hadn't eaten in 4-5 days, it was still worrisome.

Well today we got to go to the Rally Event at Outback. It was great to meet the guys biking so hard and so far to raise money for childhood cancer. Catie was still not feeling well, so I took her by the clinic and they gave her some fluids. She napped on the way home and then ate 3/4 of an Easy Mac serving. I'm happy to report that her balance is MUCH improved over yesterday and I'm breathing a little easier. It was so nice to see her moving more easily and confidently tonight.

I hate that the whole mind game can get the best of me from time to time. But, I guess I wouldn't be "normal" (whatever the heck that is) if it didn't me in this world of childhood cancer.

We're heading for the beach after church on Sunday to meet up w/ Mary Grace and her crew. We'll hang out with them for a couple of days before heading to by little brother's wedding. How on earth he's old enough to do this, I don't know -- he was only 11 when I headed off to college.... but he's now done w/ school and has met a really great gal... they match so well and we are truly happy to welcome Aunt Casey into the family officially! Catie is the flower girl --- here's hoping she'll do her thing! We'll try to update before the wedding, but if not, we promise to take lots of pictures!!

Thanks for checking in!
Love,
Jenny
P.S. Don't forget to watch Mid Morning Live on Monday if you live in the Savannah area.

Wednesday, June 7, 2006 7:54 AM CDT

Ok, I think we've come out on the other side of the whole bug thing. Uggh!!

This will be a quick update as there is a house to be cleaned and work to be done! We are in the final prep stages for the golf tournament. It's not too late to be a part if you're interested. Just go to www.cureclassic.org . Also look for us on Mid Morning Live on WTOC on Monday morning.

Another fun thing going on... The Rally Across America will be coming through Savannah on Friday. Everybody has to eat lunch on Friday, and I encourage you to eat at Outback on the south side if you live in Savannah. They will be donating all profits (for up to 150 people) to Rally for childhood cancer research. See details below.

Rally Across America is coming to Savannah!
Please join us for a fundraiser lunch at the Outback restaurant at 11196 Abercorn Expwy in Savannah on Friday, June 9th from 11:30-1:30. You will enjoy a wonderful lunch as you meet Catie, a Savannah childhood cancer survivor, and Austin and Tom, two Vanderbilt graduates who are biking 5,000 miles this summer to raise money for childhood cancer research through the Rally Foundation. The suggested minimum donation of $15 for adults and $7 for kids will get you a great meal from Outback complete with sides, a drink, and dessert. We look forward to meeting you at this Rally Across America event, and your donation will help find new cures for kids like Catie! Please contact Claire (claire@rallyfoundation.org) to RSVP or with any questions. You can also visit the website (www.rallyacrossamerica.org) for more information, updates from the road, and pictures. Thanks for helping us rally for a cure!!

We hope you'll come out and eat with us!

We'll leave you with a couple of pics from the beach.





Thanks for checking in!
Jenny

Sunday, June 4, 2006 9:13 PM CDT

Hi guys! We had a great time at the beach and we can't wait to go back. We found our favorite spot on Tybee at low tide and found all sorts of fun stuff (including a school of about 30-40 sting rays). We thoroughly enjoyed ourselves and will be headed back in about a week.

A stomach bug has invaded and Catie is feeling absolutely lousy tonight. We're two weeks after chemo at this point, so while her white count isn't super low like it got with the other chemo, it's probably low enough that it's not kicking this bug as quickly as you or I could. We're headed to her pediatrician in the morning as I'm a little worried about hydration. Her mouth was still moist tonight, so she should be ok till morning. We'll try popsicles a few times through the night. The good news is that this is a completely normal kid thing... still stinks to feel so rotten though.

We'll miss out on VBS in the morning, but w/ a little luck, we'll be there on Tues. or Wed. Just depends on Ms. Priss.

Thanks for checking in!

Jenny


P.S. Don't forget to check out www.cureclassic.org if your interested in helping out with the golf tournament.

Saturday, May 27, 2006 10:09 PM CDT

Hi all! We're home and doing well. Catie finished up round 4 of Temador last night and handled it like a champ as usual. She was excited to be able to add milk products to her supper tonight since she didn't have chemo tonight. I don't know how you leukemia folks handle the no milk a couple of hours before chemo for 2 and 3 years -- milk hides in lots of places!! The only real side effect we're seeing is fatigue. She's back in a 2 nap routine and probably will be for the next week or so. We're hoping to head to church in the morning, but this morning she was napping by 9:00 AM, so we'll just have to see how she feels. After church (and a good long nap) we're headed to Tybee for a few days. We haven't been to the beach yet this year, so we're excited for our first trip of the season. It truly is Catie's favorite place on earth.

The next MRI is scheduled for June 23. I had gotten to a comfy place -- as comfy as you can -- w/ scans, but I really dread them now. The one in November just messed us up. Catie has also seemed a little wobbly to me. I'm sure it's b/c of the fatigue from the chemo, but I'm ready to get this one over with ... I think.

We always welcome your prayers. Our visit to the Ronald McDonald House last week was a reminder of how very quickly things can change. 2 of our brain tumor friends were in PICU and very, very sick. We hope and pray they are on the mend and that things are improving very quickly. Both have been in the hospital for quite some time and they and their families are so very, very tired.

Here are some pics from the last couple of weeks. Enjoy and we'll update sometime after our beach trip.

Thanks for checking in,
Jenny


Fun in the sand


Admiring my bows-- and my tongue!! Thanks for the bows Margaret Anne! She loves them!


I love this one --not sure why, I just do


Dr. Catie and Dr. Bailee -- LOOK OUT!!


HAHA

Tuesday, May 23, 2006 9:02 AM CDT

Just a quick update. We're in Atlanta and we're good (w/ the exception of my front right tire=) !!). Today is a fun day -- a movie (a reward for many dry days for Ms. Priss -- here's to potty training), a visit w/ the horses at the Ronald McDonald House, and a visit with some sweet girls here in Atlanta who have made a quilt for Catie. We'll head home in the morning.

Platelets were finally high enough to start chemo (109 yesterday), so we started last night (2 weeks late). She's feeling good and is excited about the movie.

Don't forget to check out www.cureclassic.org if you're interested in helping out with the golf tournament. We still need hole sponsors. Just follow the sponsorship link if you're interested.

Thanks for checking in, we'll update more from home.
Love to all,
Jenny

Monday, May 15, 2006 11:04 PM CDT

Hi guys!
Just a quick update -- platelets went up a teensy bit, but not enough to start chemo (they were at 45). I'm hoping we can check them later this week and they'll be high enough. I don't like having to put off chemo this long. We have an Atlanta trip coming up on Sunday. More details later.
Jenny

Thursday PM

Platelets are holding at 35, so no transfusion was needed. So we'll redo labs on Monday and see if she's high enough to start chemo. We'll update this weekend.
Jenny

Wed. PM
Just a quick note to let you know that Catie is doing well. There were no more flare ups of her allergic reaction and she seemed to be feeling well today. We go tomorrow for a recheck of counts to see what her platelet numbers are. If she does need platelets (here's to praying that she doesn't), they will "wash" her platelets in addition to radiating them to help prevent another reaction. They will also pre-medicate her w/ Benadryl anytime she receives blood products from here on out.
We'll update soon,
Jenny

Tuesday, May 9, 2006 10:57 PM CDT
Well... today was much too exciting for our tastes!!! About 30 minutes into Catie's platelet transfusion today we noticed a small red place above her eye. Within 10 minutes, she was COVERED in hives... Her entire trunk was one large welp -- it looked like a horrible sunburn that was raised up. Her eyes and mouth were swollen so that she looked like a boxer who had just finished a rough match. It was rather scary as she was very upset (it's very itchy and uncomfortable) and we weren't sure whether the reaction would remain on the skin or affect her breathing, etc. Thankfully, her breathing was fine, she never spiked a temp, and her blood pressure remained stable. It bought us an afternoon in the clinic hooked up to a mega dose of Benadryl and another med. The hives slowly disappeared and she looked much better, although still a little puffy, when we headed home. We will watch her very closely tonight and tomorrow to be sure that nothing flares back up. We'll be sleeping with the Benadryl bottle in hand, I'm sure!!

She only got about 1/3 of the platelets today before we had to stop the transfusion. Her CBC showed that brought her platelets up to 33... still pretty low, but above the transfusion threshhold. We will check counts again on Thursday to make sure platelets are ok.

Off to bed...
Thanks for checking in,
Jenny

Monday, May 8, 2006 10:57 PM CDT
Hi all!
We're doing pretty well. Trying to keep up with the pace of spring -- it's always such a busy time. Catie is feeling well and we're very grateful. Chemo is being put off a week again as her platelets were a whopping 18,000 today (normal is 150,000-450,000). We're headed to the clinic in Savannah for a transfusion first thing in the morning. Her legs are black and blue, but other than that so far, so good. This will probably cause her chemo dose to be lowered. We don't want to have to keep putting off chemo a week to wait for her counts to rebound. We'll probably get final word on the dosing tomorrow and hopefully she'll be good to go to start next week.

Check out Rally Across America when you get a chance. It's a really neat biking event taking place this summer and Catie will be one of the kids recognized when the Rally comes through Savannah. All money raised goes to RESEARCH for childhood cancer thanks to the Rally Foundation.

We'll update soon! Thanks for checking in,
Tre', Jenny, and Catie

Friday AM 4/28

"Can I do it now?" "Is it long enough yet?" "Can I have a pony tail now Mom?" Ok, so it's not long enough for one, but boy, you should have seen how proud she was when she looked in the mirror to see her pig tails!
Have a great weekend!

Tuesday, April 25, 2006 9:52 PM CDT
We are home, safe and sound, and the trip went well. I think we had our shortest visit EVER with Dr. Claire, which is a good thing b/c it means Catie is doing great. My only real question for this visit (just 1? holy cow!!) was why her platelets dropped so low so late in the last cycle. Dr. Claire didn't seem concerned... Platelets are what are normally hit most by this chemo and they typically drop later in the cycle (usually week 3, but for us this time it was week 4). The only news there is that if it keeps making her chemo be late (last this time), we may have to lower her dose a little (remember we just bumped up to the highest dosage level per kilo). I'm hoping her platelets are tough this round and we can keep going at this dose. So... all seems well on the medical front.

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The last 2-3 months have been simply wonderful for us. Catie has felt good except for some fatigue a couple of weeks out of each month -- usually nothing an extra nap can't fix. After travelling back and forth to Atlanta twice a month between June and January, we're down to going once every 4-5 weeks. It's just been so nice. I think too, it's given our brains and hearts some time to catch up with all the events of the last 9 months -- namely finding out there was still tumor in July, having the scan scare of our life (I hope there is never another one), the stress of not knowing what we were going to do next for treatment for most of the summer and fall last year.... Now we're sailing on a surgery that showed no tumor!!!! and an improved scan. When I look back, I'm amazed -- that Catie's doing so well, that we're still standing... I think those months of uncertainty and worry were harder than I was willing to admit. It's amazing, too how little things can raise those fears again... for me it's often smells, or being in a certain place, or just sharing a conversation with a friend about all this mess.

This visit to Atlanta, we met for a second time, a family whose son has also had medulloblastoma. We first met them on our first trip to Atlanta. They found out today that there son has relapsed... 4 years after his original diagnosis. He had been doing so well, and now here they are all over again. They were devastated and my heart hurts for them. There seems to have been so much hard news lately -- for some reason it always seems to come in clumps -- this relapse news follows the news of two other kids (Tommy - /ga/tommyalgard and Martin -- /ga/martinblaisdell) showing medulloblastoma relapse or progression and the passing of sweet Baby Jay (/ga/jay).

So tonight, I guess I'm just asking you to pray for kids battling cancer, kids who are remission, families whose hearts skip a beat w/ too many bruises or low grade fevers or headaches, families who walk past an empty bedroom each night as they head to bed, adults w/ cancer, all famlies facing serious illness... It's strange to learn to live in this warped world of childhood cancer -- where things that should never feel normal become almost routine. The last few weeks, it has not felt routine -- it is not normal for kids to have cancer... it is not fair... but we continue to hope and to pray.

It's funny how sometimes a story or conversation sticks with you for a long time... One below has come to mind often over the last 2 and 1/2 years.

At school, there was a much loved professor who had been at Mercer for years... he is affectionately known as Papa Joe. I recall standing next to him in chapel one Wednesday as we sang Amazing Grace. I love that song and I believe fully in that grace that is truly amazing. As we sang we came to the 4th verse (I think it's the 4th). We sang the first line of that verse, "The Lord has promised good to me," and Papa Joe leaned over, kind of winked, and whispered, "I don't recall ever reading that in the Bible."
I bet he never realized (and I sure never thought) how much that simple statement would stay with me. God has promised abundant life, but that is not the same thing as promising good. That simple statement from a beloved professor in baggy jeans and old tennis shoes has helped me in the times that I've wondered why... "Why not?" God has given our family so many good things and good times and amazing days, and for those we are grateful. And on the days that are hard -- whether medically for Catie or us just trying to sort things out we will always hold on and HOPE...

Thanks for checking in,
Jenny

Sunday, April 23, 2006 10:40 PM CDT

Just a quick note tonight... We're getting ready to head to Atlanta for Catie's monthly check-in w/ Dr. Claire.

We really had a great weekend -- complete w/ a trip to Tea Room, popping in and out of a few stores downtown, some spring cleaning, good times with friends, a great worship service, and the grand opening of the backyard sprinkler (which Catie thought was too fun)... Hope your weekend was great as well.

Our only medical order of business this trip is Catie's check up w/ Dr. Claire. She'll get her port flushed, and overall, it should be an easy visit. We'll do a real update when we get home.

Thanks for checking in... please remember there are so many kids and families who could use extra prayers tonight -- Jay's family (/ga/jay) as they learn to get up each day without Jay there, Martin (/ga/martinblaisdell) as he continues to battle medullo, and Tommy (/ga/tommyalgard) as he continues to fight as well...

Love to all,
Jenny
P.S. Lots of folks commented on Catie's outfits in the last entry -- TRUST ME, we didn't change clothes that many times in one day -- you just got bombarded w/ pictures from the whole week! (And N.O. -- the tall green stuff is actually bamboo-- Tre's parents have it in their backyard. Hope you guys got moved in ok!)

Monday, April 17, 2006 10:15 PM CDT

Not much time tonight -- just thought I'd post some Easter pics. We'll update soon.


I found one!


Mmmm... candy...




Coloring Easter eggs


Check out the eggs (and the hands!)


"catching" the water


Enjoying the stuff the Easter bunny left


Catie with GaGa and Nana




I love this picture!



Our Easter was wonderful! We'll write more about it soon.

On the medical front, Caite finished chemo for the month on Saturday. We had counts checked today (don't have results till tomorrow).

Thanks for checking in!
Jenny

Tuesday, April 11, 2006 10:30 PM

Just a quick update. Catie's platelets were up to 120 yesterday, a little below normal, but high enough to start chemo. This is the lowest her platelets have ever been at the start of a chemo round, so it will be interesting to see how they hold out. She's NEVER had a platelet transfusion (knock on wood with me) even with all the treatment she's had. Supposedly, your body "gets used" to this kind of chemo and counts don't get knocked so low after a few rounds. We shall see...
Catie is feeling well right now. She's excited about her Easter egg hunt for tomorrow w/ school and one the following day with friends! I'm just so thankful she's doing well and her counts are high enough to do all this. Now as long as nobody reports us for all the bruises on her legs from low platelets last week, we'll be just fine!! =) Since they did get low last week (27), the "de-portation" is put off for now. We don't want to go pulling her port if she's going to start needing transfusions. Hopefully, her counts will hold this round and we won't have to worry about that.

Thanks for checking in,
Jenny

Monday, April 10, 2006 10:57 AM CDT
Hi Guys!

Camp Sunshine was a blast. I'm always amazed at how nice it is to be with other families who have walked a similar road. This weekend was no different. We met lots of families from our area that we didn't know before and it was great to see several long-term survivors. It's always good to be with Ann and Kerri and all the great volunteers from Camp. Catie fell in love with Kerri and didn't want to leave her side at all!!

Here are some pictures from a really great weekend that was full of sunshine even with the rain we had Saturday afternoon and evening.


We had a lot of fun doing arts and crafts. Here are Catie and Daddy concentrating hard on our birdhouse.


Yes, that's a real fish that she's painting... She and Lauren were so tickled at how smelly they were.


Her favorite spot on Saturday... in Mrs. Kerri's lap...


Just before dinner on Saturday... she was wiped out already. So we had some tired tears a few times, but she didn't want to miss a thing. She summoned up some energy from somewhere and it's a good thing b/c she had a blast w/ karioke that night!


Once again, her favorite spot for the day. =) They're singing Twinkle, Twinkle, Little Star with a group.


Doing the YMCA with Lauren.



Aunt Tati stopped by to visit us and she, Catie, and I did braved the microphone together (something I'd do only for Catie!! =)

Hope your week is off to a good start. Check Journal History if you need info on the golf tournament (or go to www.cureclassic.org).
Thanks for checking in,
Jenny

Friday, April 7, 2006 3:05 PM CDT

Hi guys! We hope this finds you doing well. We are loving this spring weather and have spent lots of time outside playing in the sandbox this week. Tre's been busy planting some bushes and we've just been soaking up the gorgeous days. I have to admit, this is one of my favorite times of year... I love season changes in general, but spring is just nice (once you get past the pollen and the stuffy noses). It's especially nice in Savannah. The days are longer and it's not so hot yet that you can't just enjoy being outside.

We're excited to be heading to Camp Sunshine today. It's family camp time here in Savannah. We're going to miss seeing all of our Atlanta buddies (we're REALLY going to miss you guys), but we're excited to only have to drive 20 minutes to go (and not 3-4 hours). We also are looking forward to meeting more af the Savannah families. Catie is excited to be going. She's looking forward to the fishing and the arts and crafts especially. We ready for a good dose of our favorite Sunshine!!

Catie wasn't able to start her chemo this week. Her platelets were 27 on Monday (the low end of normal is 150). I was convinced it was a lab boo boo b/c her platelets have NEVER been that low. They've only gotten into the 30's a couple of times. So we had labs done again on Wednesday and they were 60. Definitely much better than 27, but still about 1/3 of what they've been this entire cycle (and 4 weeks after chemo, go figure), and too low to start chemo. I'm not sure if this will affect our decision to remove the port or not. We may have to wait a couple of months to see what her counts do. We don't want to pull her port if she may start needing transfusions. We shall see. So, for now, we'll go to camp this weekend, do labs Monday, and hopefully start chemo on Tuesday.

We'll update w/ picures after we get home.

Love to all,
Jenny

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Cure Classic Info

We still need team sponsorships. The cost is $1,000 and our hope is that businesses will step up to the plate like our teachers have. If $1,000 is too steep for your business, but you can afford half. Let us know, we'll help you find another business to partner with. Or if your company doesn't do corporate sponsorships of this nature, but the employees in your company are interested, let us know. If you have 50 people in your company, it's just $20 a person and your team is sponsored. You could raffle off the chance to play in the tournament. (The Westin is going to be in GREAT shape b/c the Senior PGA Liberty Mutual Legends of Golf Tournament is coming up there. They'll have the course tip top for that and it's only 8 weeks before our tournament.) To sponsor a team click here and follow the links at the appropriate level. You can pay on-line via PayPal (the option to pay now will be given after you fill in the registration info) or you can mail it to Cure Classic; P.O. Box 1760; Rincon, GA 31326 .

The other big need we have is hole sponsors. This sponsorship level is $100. We need 200-250 sponsors at this level. If you're interested in being a hole sponsor, just follow the instructions listed above and click the hole sponsor level.

Also, so many of you cancer moms and dads out there sent us GREAT pictures of your kids. We now need your child's story to go with the picture for the signs we're making for the tournament. You can go to Cure Classic - Inspiration and click on "Submit your child's information here" to enter your info. It really doesn't take long. Thanks to those of you who have done this already!! We really want people to know why we're doing this.

Sunday, April 2, 2006

Our thoughts and prayers remain w/ Jay's family as they say goodbye to him tomorrow. We know that Jay is now cancer free and running down streets of gold, but our hearts hurt for his family.

Friday, March 31, 2006 10:44 AM CST
We continue to be so very grateful for the results we received on Monday. I think the fact that we actually got an improved scan has sunk in a little more each day. Catie is doing well and feeling great. We'll be starting chemo again next week at the increased dose. I expect some fatigue at the end of next and into the following week, but hopefully she'll continue to tolerate things well.

Now -- a little more about the Cure Classic golf tournament. Planning is in FULL swing and we have a really exciting report. We asked the schools in our system to each sponsor a team in the tournament. We are very pleased to announce that we are estimating the total money raised by the teachers and employees in our county is going to be $20,000. This is 13 schools!!!!! We are absolutely thrilled with all of the efforts made and we are so grateful to everyone in the Effingham County School System who wore jeans or bought doughnuts or cakes or brownies! You have done this --- thank you, thank you, thank you!!

We still need team sponsorships. The cost is $1,000 and our hope is that businesses will step up to the plate like our teachers have. If $1,000 is too steep for your business, but you can afford half. Let us know, we'll help you find another business to partner with. Or if your company doesn't do corporate sponsorships of this nature, but the employees in your company are interested, let us know. If you have 50 people in your company, it's just $20 a person and your team is sponsored. You could raffle off the chance to play in the tournament. (The Westin is going to be in GREAT shape b/c the Senior PGA Liberty Mutual Legends of Golf Tournament is coming up there. They'll have the course tip top for that and it's only 8 weeks before our tournament.) To sponsor a team click here and follow the links at the appropriate level. You can pay on-line via PayPal (the option to pay now will be given after you fill in the registration info) or you can mail it to Cure Classic; P.O. Box 1760; Rincon, GA 31326 .

The other big need we have is hole sponsors. This sponsorship level is $100. We need 200-250 sponsors at this level. If you're interested in being a hole sponsor, just follow the instructions listed above and click the hole sponsor level.

Also, so many of you cancer moms and dads out there sent us GREAT pictures of your kids. We now need your child's story to go with the picture for the signs we're making for the tournament. You can go to Cure Classic - Inspiration and click on "Submit your child's information here" to enter your info. It really doesn't take long. Thanks to those of you who have done this already!! We really want people to know why we're doing this.

Sorry to spend a whole entry on this, but we really believe in this cause and in the cooperative research of the COG (Children's Oncology Group). All proceeds go to CureSearch to support this research. If you have any questions, feel free to e-mail me at jwilkins@cureclassic.org.

Finally, with a very heavy heart, I ask you to continue to check on and pray for Jay . He was not expected to make it through the night. We continue to pray for Jay and his entire family.

Big hugs to all,
Jenny

Monday, March 27, 2006 9:14 PM CST

Praise God from whom all blessings flow!

Oh how I love to come here to report good news! Catie had the best scan she's ever had today. We have never, NEVER had an improved scan without surgery... until today!!!!! The spot that remains is 1/3 smaller than it was before!!!!! We are thrilled with this news. All this time (2 and 1/2 years yesterday since her first surgery) this has been there -- whatever it is, scar tissue, active tumor, dying tumor, whatever... but today it's 1/3 the size it was 3 months ago. (Does that mean it will finally be gone in 6 months? Let's pray so!!) We had lots of questions about what it is. The radiation has continue to work through the last several months and it's possible that this is evidence of it doing it's job. It's also possible that this is evidence of the Temador being very effective... it's also possible that this is scar tissue breaking up... Whatever it is, it's good news!

The news was so good, in fact, that Catie gets to have her port removed (or be de-ported as Kendrie's mom, Kristie says (/ga/kendrie)). This should happen in the next few weeks. When we first asked her if she was ready to have her port taken out, she said, "no." She doesn't remember a time that she didn't have it. But as we've talked about it more, she's beginning to see the advantages. We're very excited about this... it has definitely served it's purpose, but we only need a line right now for scans and an occasional lab that needs more blood than you can get from a finger stick. The really great thing about losing the line is that as long as counts hold as well as they did this round, a fever will be just that... just a fever. It won't mean an immediate trip to the doctor or hospital for cultures to be sure it's not a line infection! One more step on the road to normalcy, whatever that is.

Catie is tolerating her chemo so well that they are upping her chemo a bit to the maximum dose per kilo. This is good news as well. I figure don't mess with a good thing, and if she can handle a little more w/o problems, we'll take it.

Her hearing test gave some mixed results, but I'm fairly confident that the differences came b/c she was very tired. She hadn't been up from sedation for very long and her focus wasn't so great. The tests that are done by machine (they test pressure and something else in her ears) were both great. You usually see the damage there before you see it in the booth. So we think the changes we saw in the booth were due to fatigue and not more hearing damage. We'll recheck in a month to be sure.

There is more to share about our trip today, but we'll do it later... We haven't been home long, so we're pretty tired. But... we had to share the good news!!! Thank you for praying for us. We felt your prayers and we are so thankful for the answers we saw today!

Please remember a new friend, Abby. She was recently diagnosed with medullo and is fighting a very hard fight right now. We pray that today went well for them, and that things start getting better right now! Also pray for Jay (/ga/jay). He still needs our prayers so very, very much.

Thanks for checking in!
Tre', Jenny, and Catie
Sleeping QUITE soundly tonight!

Saturday, March 25, 2006 8:33 PM CST

Hi guys! All is well in our house tonight. We had a great week. Catie's counts didn't fall as low as expected, so she was able to return to school on Wednesday. This made her quite happy. Yesterday was a day to just hang out at the house for most of the day and we were quite in the mood for that! We stayed in our pajamas till 3:00 and it was wonderful! Today Catie was able to go to the first kid birthday party she's been to since she was diagnosed (except for her own). She has either been in Atlanta or her counts have been too low for every other party she's been invited to. What a blast she had. Even though she hasn't mastered jumping yet, she had a blast in the jump castle. She bounced until she could bounce no more and boy oh boy did she laugh! Once again... those little things... we are so grateful for a great day! Happy birthday Trip!

Tomorrow we're off to Atlanta. On Monday, scans are at 8:00, we'll report at 7:00, audiogram at 11:00 and then we'll see Dr. Claire at 1:00 for what we hope is a great report on scans and everything else. We also plan to get a quick visit w/ Dr. Crain, one of the neuropsychologists on staff to discuss her test results from last month. Please pray for nothing but news that is completely accurate and good. We know the radiation was effective b/c it made the spot at the back disappear. We just hope it was enough (w/o being too much!).

I cannot believe that we are cramming all of this into one day. It does help though and will hopefully keep our visit to just one night. A HUGE thanks to our awesome schedulers who help get everything set up just so! You guys are the best. LeClaire... sure hope you're working MRI Monday morning -- keeping our fingers crossed! We'll update w/ MRI results as soon as we have them. We feel your prayers already, just keep them going.

Thanks for checking in.
Love,
Tre', Jenny, and especially Catie

Monday, March 20, 2006 3:30 PM

I hope this finds you all doing well. Things are good here. Catie is feeling well. Her counts (mainly WBC and ANC)were a little on the low side last week -- not too bad, but they were still falling, so we decided to keep her out of church and school until they come up. She had labs done today. I don't have results yet, but this is when they were lowest last cycle. They don't get as low as they did on the other chemo, but it's low enough to put her at risk, so we figure better safe than sorry. So she's home this week, but feeling good. She's going to PT and OT each week she's doing really well with that. She continues to love school and was thrilled with the leprechaun that came to visit her classroom on Thursday.

The big news this week is that Catie's MRI is Monday (March 27). She'll also have an audiogram and we'll see Dr. Claire. We welcome your prayers for good results.

We've been reminded in recent weeks of the need for more research. 3 kids have lost their earthly battle against this beast in Savannah in the last 3 weeks. I have also learned of 2 new brain tumor diagnoses in Atlanta in the last couple of weeks. These are just the ones I know about... We have got to find better, less toxic cures.

We'll update again this week before we head to Atlanta on Sunday. Thanks for checking in.
Hugs to all,
Jenny

Saturday, March 18, 2006 8:00 AM CST
Catie is doing well. Yesterday we spent the day downtown celebrating St. Patrick's Day. Here are some pics of our day. We'll do an update before Monday.


Checking out the parade w/ Daddy


Gotta watch out for that Leprechaun Juice!!


Hanging out w/ my Aunt Donna


Catie's cousin, Baby Claire, couldn't get enough of her! They were so funny together.

It was a great day -- gorgeous weather.

Remeber check out Cure Classic when you get a chance. Also check on Jay as he continues to need our prayers.

Have a great weekend!
Jenny

Sunday, March 12, 2006 10:07 PM CST

I've never bought it before... I've walked by it a thousand times in the store, but we haven't needed it until recently. Oh how I love the smell of it. I could have bought some a a couple of months ago, but I wanted to see if we still needed it after Catie started her new chemo... Sure enough, she did. So yesterday, during a completely ordinary run to the store, I grabbed a bottle of Johnson's Baby Shampoo... Oh, how sweet it is!

Catie finished this round of chemo last night. She's doing well, but seemed a little more tired than usual this afternoon. So, she missed choir tonight. After a little extra rest, she seemed better, but crashed hard and fast at bedtime in her... drumroll please... in her BIG GIRL BED. Ever since diagnosis, she's been in our bed. Friday night she just decided that she wanted to sleep in her bed. She asked for Joey to be up there with her. They curled up and went to sleep. So, she's snoozing well in there again tonight. I seems so strange. We're proud of her though!! She's turning into such a big girl and is getting more and more independent every day. Now... if we can JUST master potty training!! We're working on it!

Scan is 2 weeks from tomorrow.
Love to all,
Jenny
P.S. Check in on Jay (/ga/jay) when you get a chance. They've been in PICU for 5 weeks.

Friday, March 10, 2006 9:58 AM CST

Hi guys!
Just a quick update to let you know Catie is doing well. She's finished days 1-3 of her 5 days of chemo. She's done really well (except for the first night when Einstein here forgot to give her Zofran and she woke up sick -- I felt like a dog for forgetting). She seems a little tired (she crashed for her nap at 10:15 this morning) today, but is feeling ok. She helped me give Joey a trim this morning! Her week at school was great -- she absolutely loves it.

I'll update more before the weekend is over, just thought we'd let you know she's doing well.

Thanks for checking in!
Jenny
www.cureclassic.org

Sunday, March 5, 2006 8:11 PM CST

Oohh... it's been a while since we've done an update. Sorry!! With Catie's counts being low last week and me starting back to work for a few hours a week, there was lots of juggling to make sure she was covered at the right times. Throw in PT, OT, labs, etc. and it was a busy week with way too many trips to Savannah thrown in!

We are doing well and Catie is doing great! Her labs looked good last week, not normal, but a-ok for where we're at and good enough for her to go back to school tomorrow. We will check them again tomorrow and if all looks good, she will begin round 2 of Temador tomorrow. Her next MRI is set for March 27. Last week Catie started the Celebrex. She takes a pill in the morning and again in the evening and is doing great with that. We're so grateful she's feeling so well! We're also pass that 3 week mark and Catie's hair is as thick as it has ever been! I'm thinking she's going to get to keep it. While we totally know that hair isn't that important in the grand scheme of things, it sure is fun!!

Planning for the Cure Classic
is in full swing and keeping us quite busy! We are thrilled with the progress made so far!! The employees in the schools in our county have been tremendously supported. Each school's staff has committed to raising $1,000 and most of them are well on their way!! 3 have already given their donations to us totalling over $4,000!!! How amazing is that?! Keep up the great work guys! We are still in need of teams and sponsors. If you are interested in playing, click on the sponsorship opportunities button on the webpage and look for the appropriate level. If you have any questions, please e-mail me.

This weekend we were once again reminded how vital the research is. Jack, a young fellow who battled lymphoma, gained his much earned rest Friday morning. I met Jack only a time or 2, but I ache for his family. I can't even start to imagine what it would be like to know they'll never hold or hug their child again. Please pray for their family and for all that had grown to love Jack.

Little Jay and Jake also continue to need your prayers. Please go by and let them know you're thinking of them.

Thank you for checking in with us! We will try very hard to do a better job of updating.

A quick Catie story to close...

Last week we were headed to the doctor to have labs done. She's back in the swing of weekly finger sticks and I learned just how comfortable she is with it as we turned onto the road that the doctor's office is on.

C-"Mama."
Me-"Yes baby?"
C-"You not need to go inside with me at doctor. I can do it all by myself. You wait in the car."

I finally convinced her that I DID indeed need to go inside with her, but that I would let her do everything by herself.

Please continue to pray for Jack's family...
Love to all,
Jenny

Wednesday, February 22, 2006 9:55 PM CST

Brief Atlanta update below golf info.

The tournament will be held on June 19th at the Westin at Savannah Harbor, home to the Legends of Golf Tournament. We are thrilled to be holding the tournament here. We're excited about a lot of work already going on and we so appreciate the amazing support the employees of the Effingham County School System have given us.

We are in need of sponsors and donations of things that can be used as door prizes or in gift bags. We need folks who are interested in playing in the tournament. We are encouraging corporate sponsors for each team entered. To learn more check out the great website that Kirk and Natalie, Maddy's parents, have put together for the tournament. At Cure Classic you can sign up teams and learn more about the tournament. There is also a place for you cancer moms and dads out there to share your child's story (click the inspirations tab). It's just a quick thing where you share some info on your journey so that we can share the faces and stories of childhood cancer with the golfers that participate. We want them to see why we're doing this.

PayPal will be available on the site by the first of March, so that donations, sponsorships, and team registration can all take place on-line if you want. If you have any questions, please e-mail them to my e-mail for the tournament, jwilkins@cureclassic.org .

Things went well in Atlanta. Catie's neuropsych testing was very informative. She scored well in most areas, but we'll be doing some reading on visual perceptual problems... more on that later.

Dr. Claire was pleased with how Catie looked. We got the go ahead for beginning the next round of Temador in 2 weeks and Catie will begin Celebrex as soon as we get the prescription filled (hoping for no insurance battles on that one). Her ANC was at 630, not horrible, but lower than I expected. It's close enough the the magic number of 500 that she'll be missing school and church until it comes up. Too much crud going around right now. We'll check counts next Tuesday or Wednesday and see how they're looking.

Catie's next MRI will be in about 5 weeks. I have to admit that I feel a little nervous about this one, not because of anything I see... just a little gun-shy after the last "routine" scan (we've officially decided that no scan is routine).

Speaking of scans, please pray for our good friends Chandler and Mary Grace as they both have scans tomorrow.

Thanks for checking in,
Jenny

Monday, February 20, 2006 8:15 AM CST

Growing up, it always seemed to me that the second day of something new was always a little harder than the first. I guess it was because I was always so excited the first day, and then the second day you realize that you have to keep doing this for a while. It's no different for me with taking Catie to school. She did great again today (she only went one day last week due to conference scheduling) but it was a little harder for me to watch her walk away. Maybe b/c I took her down to the room last week, and today I dropped her off at the door (a teacher waits there on the kids each day), maybe b/c I realize it's one of the first steps of letting go. I fully realize the blessing and miracle it is to be able to reach this stage where I have to let go a little, it is by NO means something we take for granted... but most of parenthood is teaching your kids to be more independent, which in turn means we have to let go bit by bit... Well, for us, this is really the first "letting go" we've had to do. Catie and I have pratically been attached at the hip for the last 2 and 1/2 years. We've spent lazy mornings lounging and just doing our own thing. Today it seemed so quiet when I walked back into the house after dropping her off... a quiet that will give me time to get some things done and just take some time, but boy! it's quiet!! Whenever it's quiet I think of all the parents whose houses are too quiet all the time because a little voice that once filled their house each and every day is gone for good... we continue to pray for all of you out there.

We have reached kind of a weird place in Catie's journey. We're not "done" with cancer, but things are quite easy and seemingly "normal" right now (please knock on wood with me). She only takes chemo 5 days a month and the rest of the days feel strangely normal. Based on counts last week, we don't have to worry too much about infection. Her white count is lower than that of a normal kid (it was 3.0), but nothing like the ANCs of 50 or less that we often dealt with the week after her other chemos. I do expect some "normal" kid illnesses b/c her white count is lower and b/c she's in preschool, but if her white count continues to hold, they won't be as scary as they would have been before. She's settling in to normal pretty well too. Her independence is growing every day. I'm hearing, "Mommy, I do it myself," or "Daddy, I can do it," more and more. Of course there are still times when she wants more help than she really needs, but this is happening less than it used too. She's trying out new things physically and has a bounce in her step that's never been there before. Being around other kids (whether it's at church choir or school or just hanging out) is making her want to be more independent. Her hair continues to grow (we should know in a couple of weeks if she is in the lucky 80hat keep their hair with this treatment) and she looks so healthy. We are so grateful for every single day, especially days where she feels so good. However, we know all too well the daily struggle that childhood cancer can be. We know far too many friends still in the thick of the battle and too many whose battles did not end in the way we so desperately wanted.

That is why last year we held the first annual Cure Classic golf tournamnet benefitting CureSearch. Last year we raised $8,500. This year our goal is $50,000. The tournament will be held on June 19th at the Westin at Savannah Harbor, home to the Legends of Golf Tournament. We are thrilled to be holding the tournament here. We're excited about a lot of work already going on and we so appreciate the amazing support the employees of the Effingham County School System have given us. We are in need of sponsors and donations of things that can be used as door prizes or in gift bags. We need folks who are interested in playing in the tournament. We are encouraging corporate sponsors for each team entered. To learn more check out the great website that Kirk and Natalie, Maddy's parents, have put together for the tournament. At Cure Classic you can sign up teams and learn more about the tournament. There is also a place for you cancer moms and dads out there to share your child's story. It's just a quick thing where you share some info on your journey so that we can share the faces and stories of childhood cancer with the golfers that participate. Please go by the site, click "Inspiration" and then click the button to share your child's story. A few stories will be posted on the web, but all will be shared on signs with the golfers. We want them to see why we're doing this. Thanks in advance for your help and thanks for your awesome response to our request for pictures a couple of weeks ago! If you sent us pics of your child, we've put several on the site (not all are there, there wasn't room, but we're using the others in the brochure and on the kid's story signs). So go by and check it out. PayPal will be available on the site by the first of March, so that donations, sponsorships, and team registration can all take place on-line if you want. If you have any questions, please e-mail them to my e-mail for the tournament, jwilkins@cureclassic.org .

Ok, gotta get some stuff done. Please check in on our buddies Jay
(fighting so hard right now) and Jake (going inpatient for chemo this week).

Thanks for stopping by,
Jenny

Wednesday, February 15, 2006 Noon

Sorry we didn't update last night. Crazy day, but a very GOOD day! Catie loved her school and declares that the Valentine party was her favorite part. She can't wait to go back. Check out the 2 pictures below and we'll update soon!!

Catie with her teachers!


Catie was playing in her room yesterday afternoon. I noticed it was awfully quiet. She emerged with shouts of, "I did my hair Momma! Look! Look!" She had taken her BODY glitter and slathered it all in her hair. I think her scalp will still be sparkly at Christmas!!
Have a great day! We're off to check counts!
Jenny

Monday, February 13, 2006 9:55 PM CST
URGENT PRAYER REQUEST A former student of mine was hit by a car this morning. Please pray for Whitney Mileski and her family. She is in PICU and faces a very long road. I know that her family appreciates your prayers. I can't imagine how hard things must be tonight for them.

NEW PICTURES ADDED MONDAY NIGHT
Just a quick update tonight as we have an early start tomorrow for Catie's first day of school!!! She begins preschool tomorrow and she's looking forward to it. We have her "backpack" all ready to go by the door. So many times I wondered if we'd ever make it to get her to preschool. Here we are... and here's to reaching all those other milestones in life as well... We promise to post a full report in the next couple of days!

We finished the first round of Temador last night. She handled things like a champ each night gulping down the pills in her applesauce. We've worked out most of the kinks with the insurance stuff, so I'll be picking up a full prescription of Zofran tomorrow!!! She seems to be tolerating the Temador well thus far. It will be interesting to see how her counts are on Wednesday. As far as hair, we won't know for a couple more weeks.

I have several e-mails I need to respond to and I will be trying to catch up by the end of the week. Between going out of town and squeezing in a few work hours, I haven't gotten to everything I've meant to. Thanks for being patient.

Also, I have a few thank yous to send. it always makes me nervous to do it here, b/c I know I'll leave somebody off... Thanks to all of you who have sent Catie cards. She has quite the collection of Valentine cards and she has loved getting mail! Thank you to all the great folks w/ Audrey's Umbrella... the cards and little goodies you send are always so much fun! Melinda, you outdid yourself this week -- 2 in one week!! Catie loved all the fancy girl stuff and she and Joey have been playing with the heart bone together all week -- I don't know which one of them likes it more... you do so much to brighten Catie's days and I sure hope you know how grateful we are... haven't forgotten about the picture in the pjs... she's snoozing in them tonight, so maybe I can get it in the morning... Uncle Len and Aunt Dot's Sunday School class... Thank you for the dog that you all signed... Catie loves it and we've read all the messages together. We truly appreciate your prayers. Beverly S., you are always so sweet to Catie and to our family. Your cards always make us smile... Catie loves her new book and she always loves those cherries! To Margy, thank you for the quints dolls... Catie thinks they are too cool... she's having fun with them.

I know I'm leaving folks out ALL over the place, but this was just a quick list. Promise to try to get back on top of things quickly.

We'll update tomorrow!! Love to all,
Jenny

Thursday, February 9, 2006 1:00

WE HAVE A PILL POPPER!!! Catie did such a great job taking her new meds last night!!! She did it like a champ. Tre' and I were doing a serious happy dance around the kitchen for her after she did. She got a kick out of that!! We had a great morning at Calvary, went by her school, and now we're off to see Alice and her family! We promise to update when we get home!
Love to all, have a great weekend!
Jenny

Tuesday, February 7, 2006 9:52 PM CST
Boy are things changing around here!! In the last week, I've started back to work (for a few hours a week with Babies Can't Wait and the school system) and next week it looks like Catie will start preschool (that is if I can figure out where I put her birth certificate -- somewhere where I'd remember it I'm sure!). Things seem to be going so fast. I honestly do not remember how I did it before she was sick -- working full time and juggling everything at home. This week has gone very smoothly, there's just a lot less of the down time we've grown so accustomed to. It feels good to get out for a few hours a week though and I think Catie will greatly benefit from going to preschool for a couple of days a week. She needs some time to spread her wings and I think she will love spending time with other kids her age.

In the last couple of weeks, she has just seemed to blossom... she seems more grown up every day. The things that she says are so funny and she has really learned to "get our goats" so to speak. She has us laughing a lot and though she has always been happy, she seems to be laughing more and more. That's a sound I could never get enough of. More than once in the last couple of weeks we've commented on how she's becoming more and more like a "normal" 3 year old. She's also moving very well... she's almost running and she loves to practice around the house. We've really just been having a good time.

We're excited about a couple of things coming up this week. We get to visit Calvary Baptist Day School's chapel on Thursday. Calvary has been so good to us and we're excited to visit with them. Then we get to head to visit my college roommate. Catie hasn't been there since she was diagnosed as we were scared to get to far from one of the hospitals we knew well. I'm a little nervous about being gone while we're doing the new chemo, but I think things will be just fine. Alice and her family have been so good about making the drive to come visit us so we could still visit and we're SO excited to get to go to their house this week!!

Speaking of chemo, we will start tomorrow. We've been having this lovely insurance battle over Zofran (worth its weight in gold nausea med). They only want to give us 4 tablets at a time (we're switching from the liquid to the meltable tablets) and Catie is supposed to get one every 8 hours while she's doing chemo. Do the math... yep, yours truly gets to go to the pharmacy every day until they approve us to get more at once. I don't know why it's like that w/ the tablets, they'll give you 20 doses or so at a time with the liquid... oh well... our insurance battles have been few, so we'll try not to complain... too much. Ms. Catie learned to swallow the BIG M&Ms today!!! Applesauce is the trick for us. Thanks for all of you who e-mailed and posted tips on what might work! I personally like the ice cream suggestion and Catie would have loved the butter choice (she would eat her weight in butter if we let her), but we couldn't do either of those b/c she can't have milk products for 2 hours before or after. So... applesauce it is. She did it like a champ and was quite proud of herself. Let's just hope it goes as well tomorrow night with the real stuff.

I've got to get a few things done, so we'll sign off for tonight. Please check in on our friend Jay (/ga/jay). He really needs a miracle right now and they can use all the prayers and encouragement you have to offer.

We'll let you know how tomorrow night goes!
Take care,
Jenny

Monday, February 6, 2006 9:59 PM CST

Hi guys! Just a quick note to let you know we're starting Temador this week. Probably on Tuesday or Wed. depending on when the pharmacy can get the med. Just wanted to let you know.
Jenny

Saturday, February 4, 2006 9:59 PM CST

Hi guys!
We continue to do well here. Still no final word on when we're starting Temador, but I expect to hear this week. I put off practicing pill swallowing all week, but this morning Catie was asking me if she could. So I handed her a mini M&M, she popped it in her mouth, took a swig of water from her Care Bear cup, swallowed and opened her mouth to show me it was gone. I have to admit, I was quite impressed...1st try. She did much better than I did when I was learning to swallow pills and I think I was probably 7 years older than she is. We'll try the normal size M&Ms tomorrow and see how that goes.

We're getting back in the swing of things. We've been gone so much since the end of September that it's just been crazy. This week we caught up on lots of routine appts. and we're hoping to get Catie's PT going again next week. So far we don't have any medical appt. on the book for her until the week after Valentine's Day. That week she will have a neuro-psych exam to see how she's doing following radiation. We'll probably see Dr. Claire that week as well. Other than that, we'll have labs weekly after starting Temador. We can live with this schedule.

A glimpse at Catie's week...

Goofing off at home


"camping" with her buddy Ginger


What do you do when you want to play with your dog and he won't come inside and Mom says you have to be dressed to go outside? You sit in the floor with the door WIDE open and wait...

We'll update more. There are some exciting things going on with the golf tournament that we want to share, but for now... it's off to bed.

Hugs to all,
Jenny

Sunday, January 29, 2006 8:57 PM CST

New pics in the photo album!

Hi guys! It's been a bit crazy here. I think I've lost my mind trying to house train and potty train at the same time!! Oh how I love to clean up.... haha.

Catie is doing absolutely wonderfull!! She's feeling great, has tons of energy, is moving well, and keeping us all on our toes... just like a 3 year old should. We are so very, very grateful!!

As for the report from last week...
We are waiting on 2 more opinions from neuro-oncologists. If they agree with all of the other docs whose opinions Dr. Claire has gotten we will begin Temador. *Tune out here if you don't like the medical junk.* It is a drug that was originally developed for brainstem gliomas. There have been a few studies using it w/ medulloblastoma that have shown great promise. It is just being introduced as a frontline drug (1st go round -- original diagnosis) for medulloblastoma in clinical trials. The studies that have been done generally have been done with patients who have very advanced disease -- sometimes in the spine and bone. There are instances of patients with this very advanced disease showing a complete response (remission), others showing a partial response (shrinkage, but tumor still remains), and a stable response. Of course, it has not worked on all who have used it. However, the thinking is, if it has been able to bring about any kind of positive response in patients w/ such advanced disease, then in Catie's case, where we *think* we have no disease, or at least no *visible* disease, we are hopeful that have a good outcome with it. The really appealing thing about this drug is the lack of serious side effects in most cases. Only 20percent have their blood counts affected. Catie is at a slightly higher risk for counts being affected b/c she is pre-treated (has had chemo/radiation before), but we are very hopeful that her infection counts will not get too low and that she will be able to be out and around people more than she was before on chemo. I have also heard that with the 1st cycle the platelets can drop pretty quickly but w/ subsequent cycles the body seems to adjust. Also, only 20percent lose their hair... crossing our fingers on this one too! There are a few other things that can always happen, but overall, the side effects of this drug seem very minimal compared to other drugs Catie has used. We feel that it is the best choice for where we are. Dr. Claire feels that it will be able to "chew up" any disease that remains that we can't see.

She will take it once a day for the first 5 days of each 28 day cycle. We expect to do this treatment for between 6 months and 2 years. We will do it for a couple of months to see how she tolerates it and then we will probably add Celebrex. It is an angiogenic drug and affects the blood supply to tumors. She will take this twice daily. All of these are pills, so guess what we start practicing tomorrow? Potty training and pill popping (or M&M popping to start with?!?! I will surely lose my mind!!! HAHA!

Since Catie's last surgery, there has not been a great deal of time to just be still and process all that has happened in the last few weeks and the last 6-7 months. Besides the first 5 weeks of Catie's illness these months have, without a doubt, been the most difficult. There has been so much up and down, so much hope and so much anxiousness, so much waiting. I feel like my brain needs some time to catch up with reality and all that has happened. I know it seems like with all the waiting there has been plenty of time... but stressful, anxious times haven't proven to be the best times for thinking through all that's happened.

Today as we sat in church I was again overcome with a feeling of gratefulness for the blessing of the news that came from the surgery. It is difficult to describe a grateful feeling that deep and that real. However, it is tempered with the reality of all of the other children who have walked this road ahead of us w/o such blessings and of all the children whose fights are so desperate right now... children whose parents and friends and family pray for them every day just as we (and you) have for Catie, children who I have prayed for... But I do believe that all good gifts come from above and today, and every day, we are so very grateful for every gift we have received. I wish I could more adequately describe the mix of emotions, but the words escape me and there are things to get done around here before my head hits the pillow, so I'll end here.

Thanks to all of you who have sent pictures or your permission to "swipe" pictures from your website. We still need more if anyone else would like to send some for us to use in the golf tournament.
Love to all,
Jenny
P.S. The cookbooks have sold out -- holy cow, is that crazy or what?!?! We should have more in in 6-7 weeks and we'll let you know!! Thanks so much for all of your interest!

Wednesday, January 25, 2006 9:17 PM CST

We're home and we're good. More details from Atlanta later this week.

For now, I need some help from you cancer moms/dads out there. We need pictures to use for the brochure and the webpage for the golf tournament we're planning. We have high hopes for this tournament and we're setting our goals in the stars. There are some very exciting things going on in the planning process and we can't wait to share them with you here.

For now, we need pictures of your child, you child w/ other kids, etc. We need kids on treatment, kids off treatment, and Heaven's Helpers as well... Just attach the pic as a jpeg file to an e-mail and shoot it my way (e-mail address at the bottom). We're trying to get this all done pretty quick, so time is of the essence. If you don't have time to shoot me an e-mail, but don't mind if I copy a pic from your page, let me know that as well. Thanks in advance for your help.

We had a wonderful time at the Aquarium. It really is beautiful. We'll update by the weekend with details on all the happenings and news from Atlanta.

Thanks for checking in,
Love to all,
Tre', Jenny, and Catie

Sunday, January 22, 2006 11:46 PM CST

Well, the new addition is here and he has already made himself quite at home. Catie loves him and is good at helping to take care of him. She has definitely earned the privilege and she is loving every minute of it. As I write this, Joey's curled up sleeping right next to her. I knew we'd made a good choice when within 2 hours of bringing him home, this was the scene in our living room.



It doesn't get much better than that.

This will be short b/c it's late and we head to Atlanta tomorrow. We have an appt. w/ Dr. Claire tomorrow. I think she going to be surprised at just how well Catie's moving. She is walking wonderfully!! She spent about 99% of her time on the couch up until Friday afternoon (hmmm... isn't that when the dog showed up). She would have us carry her everywhere and didn't want to walk. She was weak and wobbly and her center of gravity has changed w/ all the steroid weight gain, but... Joey has gotten her up and moving about. She has steadily improved all weekend and tonight after dinner she was holding onto 2 chairs, leaning way over and sticking a leg straight up in the air behind her. W/ balance issues, standing on one foot has never been her forte, but she had it down!!

So... we see Dr. Claire tomorrow and discuss our next treatment steps. We hope to start chemo this week. I really think it's going to be a much more tolerable drug than drugs we've used in the past. Hopefully tomorrow we will have all the opinions in that we need so we can make a definitive decision and get started. A lot of folks have asked why we have to do more treatment when the surgery showed no sign of cancer. The main reason is that we went into radiation with active disease (as shown on scans). Even thought that mystery spot disappeared with radiation, we can't be sure that every cell is gone. So... we do a low dose chemo for a while to help her body "chew up" any bad cells that may be left. Chew, chomp, and grind it away as far as I'm concerned.

On Tuesday we see Dr. Hudgins for a follow up and staple removal (joy of joys... not something we recommend if you don't have to do it) and then a follow up audiogram to see if there's been any change since her last one. We've saved the fun stuff for last... We finally have reservations to go to the Georgia Aquarium. They've been really hard to get before, and we've lucked up this time. We're really excited to go check things out.

We'll update more when we can. Thanks for checking in and praying and posting and just doing all that you do!! Continue to check on our buddies Jay (/ga/jay -- battling pneumonia and medullo relapse), JohnMichael (/ga/johnmichael -- admitted Sunday morning due to fever and vomiting), and Marin (/ga/marin -- battling relapse).

Love to all,
Jenny

Wednesday, January 18, 2006 10:17 AM CST

Please stop by and visit our friends Jay and Marin. They could really use your prayers and encouragement.

I’ve had lots of thoughts running through my mind to write here, but the words aren’t there yet. So today I thought I’d share some pictures from the last week and some from the last year.

This picture was taken Monday. It doesn’t do justice to how yuck she’s been feeling b/c of the weight gain and mood swings from steroids. I think she’s gained 5 pounds. She’s doing her favorite thing (besides eating), playing Uno.


This picture is from last Monday or Tuesday. What a difference a week makes.

These 2 are from the 2 days before surgery. Practicing on baby and WOAH! check out that hair!




Speaking of hair, we've gotten so used to that soft stuff growing in on her head that it was almost shocking to look back at old pictures. This picture was taken a few days after her surgery in July. She was still feeling pretty yucky, but she was trying hard to smile.


This one is from a couple of weeks after July’s surgery. Check out that steroid pudge!


I’ve always loved this picture of Catie, Ryan, and Bailee. It’s from May last year.


It’s amazing how much she’s changed over the last 8 months! Thanks for looking back with us.

We’ll update again by the weekend. Maybe we’ll have pictures of the newest member of our family set to join us on Friday or Saturday. Don’t get too excited… just a dog, but a very cute one. Catie can’t wait.

Take a moment to read the following forwarded to me by our good friends the Morgans and the Connors and go vote.
I don’t know if you saw the Today Show this morning, but one of our Team Leaders for CureSearch from California, our very own Robyn Raphael is one of 3 finalists to be “Godmother” of the new Royal Caribbean cruise ship, Freedom of the Seas. The finalists were chosen for their “exceptional spirit, courage and integrity.” Robyn definitely fits the bill. Super personality and great leader for our organization.
Please go to their web site www.msnbc.com, click on the Today Show at the top and then, on the upper right hand side, click on ‘Vote: Who should be Godmother?’ You can then click on Robyn’s picture to go to the screen to vote for her. What a wonderful tribute to Robyn! Let’s get everyone we know to vote!
If she wins, she will be able to cruise the Royal Caribbean once a year for a lifetime. Knowing Robyn we would surely have “childhood cancer” advertised somewhere on that ship.

Thanks for checking in,
Jenny

P.S. Friends of Catie cookbooks will be in on Monday. They are available for $10.00. If you are interested in purchasing one, e-mail me and let me know. Thanks!

Sunday, January 15, 2006 9:59 PM CST

Smiles from our weekend...

*wobbly steps from the great room to Catie's bedroom
*4 servings of mac-n-cheese since lunch today
*at least 20 rounds of UNO
*getting nasty taking liquid steroid down without tears or a fight... hearing the words, "I did it like a big girl!"
*Hope of a dog in our very near future --- buying a bag of chew sticks at the store b/c Catie insisted I pick something up for the dog when I ran to the store
*lots and lots and lots of snuggle time on the couch
*Catie kisses, of which ther can never be too many
*her reminding us that we need to put cream on her owie -- she is so on top of things
*getting down to needing a med every 12 hours in stead of every 6 or 8


Catie is still not feeling 100 percent, but she is doing amazingly well considering she had brain surgery this week. She is eating us out of house and home... her little tummy looks like it's going to pop and she still wants to eat and eat. We've been staying home as she's still kind of puny. Board games, Uno, movies, snuggling, and of course EATING continue to rule the day and that's A-ok with us.

Thanks for checking in... Please check on Jay and Marin as they and their families really need your prayers.

We'll update more soon,
Jenny

Friday, January 13, 2006 9:49 PM CST

Home sweet home sweet home...

We made it around 3:00 this afternoon. Catie was glad to see her house! She continues to do well. Yesterday she seemed the strongest she has since surgery. She only napped a couple of hours during the day. Today has been a bit more of a catch up day. She slept most of the way home and then took another good nap a couple of hours after making it here. We're going to continue to just take it slow for as long as she needs to. She is totally into board games and that's something fun that matches her energy level and ability to get around right now. She's taken a few steps and did much better than I expected. That was Wednesday and I haven't been able to get her to try to walk again yet. She says, "I no can walktoo good right now." She seems to know her limits and that's good.

We had a good meeting with Dr. Claire today. I'll go into the details of it later b/c right now I'm tired. I'll just share the bit of awesome news we got... all path reports have come back clear!! While the piece that remains will be a nagging worry, we are so thankful for the awesome news and we pray that that tissue is like what was removed.... harmless scar tissue.

We will return to Atlanta the week after next for a follow-up audiogram, staple removal, and to start chemo. We'll write more later on details.

We cannot even begin to find words to share how grateful we are for the prayers we've seen answered this week. The news was MUCH better than it could have been. We are thankful for that, for her quick and continued recovery. Thank you for walking on this journey with us. Your prayers and encouragement continue to make it easier and we're so thankful you're along for the ride.

Love,
Tre', Jenny, and Catie

P.S. The only pain med we're using now is Tylenol. Can you believe she is still asking for it as a suppository as opposed to an oral?!?!?!?! I SO do not get that!!! But we give her a choice where we can so... suppositories it is. She keeps asking for us to give her the steroid "in her hiney" instead of in her mouth. She doesn't understand why they all can't just be suppositories!

Thursday, January 12, 2006 4:55 PM CST

Hi guys! Catie is doing really well today. She has been awake more and is feeling well enough to sit at the table and play board games or UNO for a good bit of time. Add in some movie time on the couch and a good nap, and you've got our day. She's eating and drinking well and is acting more like herself. She's not down walking around or anything yet, but she did take a few wobbly steps this morning. I'm very pleased with her balance when she's sitting. She doesn't need to use her arms to balance herself or anthing when she's just sitting. All in all, very encouraging. The other piece of encouraging news we got today is that 2 of the 3 pathology reports from Scottish Rite are in and they are clear!!! We're still waiting on 1 report from Scottish Rite and another report from Florida.

Yesterday we had some real issues w/ taking meds. Catie normally takes meds well, but after surgery, she is just over the Ms. Nice Girl and wants no part of it. She's not having to take a huge amount of meds right now (just 2 tsp. every 6 hours) but she hates it. Yesterday it took over an hour at both 6:00 and midnight to get her to take it. Today she has done MUCH better and I'm hoping the trend continues. We've dropped her regular meds as they are preventive stuff b/c it is vital that the steroids get in her. We get to drop to 1 tsp every 6 hours after lunch tomorrow and we hope to be done with the steroids by the middle of next week. This is much quicker than she came off last time, but hey -- the less time on steroids, the better as far as I'm concerned!! Those drugs do awesome things but the side effects are no fun.

Tomorrow we will meet with Dr. Mazewski. We decided that we got all the info. we need from Dr. Hudgins on Wed. so there really isn't any purpose on us sitting down together. Dr. Mazewski will check her out and we should have time to talk about our next step. Then, as far as I know, (and as long as things go well) we should be free until the 24th when we come up to get staples out. We'll see Hudgins that day, and will probably have appt. with Dr. Claire and audiology to do the follow up audiogram.

As long as things go well we'll be heading home after our appt. tomorrow. That is AMAZING to me ... an answer to prayer!! So hopefully, our next update will be from home sweet home!!

Love to all,
Jenny

Wednesday, January 11, 2006 3:00 PM

We're outta there!! At RMcD House. Will update later.
Jenny

WednesdayAM
Ok... this morning things look much better too me. We got a GREAT night's sleep (thank you Amy) and we have had an opportunity to talk with Dr. Hudgins this morning.

Yesterday when he gave us the MRI results and told us that he had removed less of the spot than we had hoped I couldn't really think straight to ask any questions. We were expecting for the whole thing to be removed, so hearing only 1/3 to 1/2 gone was kind of a shock. We didn't even ask, "why?" we were just kind of dumbfounded.

Well, this morning we were able to talk things through more. He removed some tissue from what he feels was the heart of the spot. All of the tissue surrounding it looked very similar and none of it looked concerning to his eye. (Remember, he's been doing this for at least 20 years, he's the chief of neurosurgery, and he's seen (unfortunately) a lot of brain tumors.) After removing some tissue and sending it down to pathology he went down and talked with the pathologists while Catie was still asleep. After looking at the tissue and talking to the pathologist he felt it was ok to stop. There were nerves in the way of the rest of the spot and based on the initial pathology he felt it safe to stop and not risk going through those nerves. He feels like the sampling he took is representative of all the tissue that is there. He also said this is different than in July (when he removed tissue and there was tumor behind it) b/c the first tissue he removed then looked suspicious to him. This did not. He seemed fairly confident and we do trust him. He opted to do surgery this summer when other major institutions (including St. Jude) said they felt we were just looking at scar tissue. We are thankful he did b/c this summer there was still tumor there. This led us to radiation to take care of the remaining tumor. Without the surgery we would not have gone ahead with radiation and I feel confident the tumor would have grown back.

So... we feel much better -- not as good as if the whole spot was gone, but much better than last night. We are also, drum roll please, GETTING DISCHARGED TODAY!! Catie has gone through a box and a half of popsicles since yesterday morning, so she's staying hydrated. We will stay at RMcD House until Friday or so just to be on the safe side. We also still hope to sit down with Dr. Claire and Dr. Hudgins to go over things thoroughly once more.

Some smiles from this week...
*the moment Dr. Hudgins said "no tumor"
*the support we felt from those here with us, whether your were here physically, in spirit, or via the internet we thank you
*Catie getting Dr. Hudgins, the cheif of pediatric neurosurgery, to try to touch his nose with his tongue -- oh how I wish I had my camera ready -- it was priceless...
*All the visits from folks we've come to love in different departments at Scottish Rite... It means so much that you guys took time out of your day to come by and see us and check on Catie. You have no idea of the impact you make on children and families each and every day. We are so thankful we've had each of you on this journey... you have made it easier.
*The guestbook on this site... holy cow!!
*Seeing Catie finding the energy to tease a little bit! Her spirit is so strong and we are so grateful.
*Silly socks!!

I could write more, but I'd better head back to the room. Please continue to check on the other kids we've mentioned in recent entries and to pray for these final path reports... that they be clear and that they are representative of every cell that remains.

Love to all,
Jenny

Tuesday, January 10, 2006 7:31 PM CST
Catie continues to do very well. If she continues to do well, I expect we'll get our walking papers tomorrow. We do not yet have the final path reports back yet. One report should be back tomorrow and one will be back next week.

Now for the not so great news of the day. The MRI showed that only 1/3 to 1/2 half of the spot was removed. This is definitely not optimal. We will glean information from the path reports, but the question of what is still there remains. The last surgery showed scar tissue first with tumor cells behind it. Our hope is that if all he pulled out is good the rest of it is too. Our fear is that regardless of what we learn, there could still be cancer. Our frustration is that in some ways we feel that in many ways we are no better off than we were 3 days ago.

Sorry for the raw frustration... the news is fresh. Sorry I haven't called all the folks we probably should have yet with the news. We hope to sit down with both doctors at the same time this week so we can hash everything out and find answers to the questions we have.

Hebrews 4:16
Jeremiah 29:11

Much love to all,
Jenny

Tuesday, January 10, 2006 9:59 AM CST

Good morning! Catie is doing well. She begin to eat during the night and then ate and ate. We've lost the catheter, the pulse ox, the art line (iv that continually monitors blood pressure and allows you to draw labs), and the heart monitor leads will be coming off as soon as her MRI is over. She has 2 IVs left, but we expect one of those to come out soon as well. Catie will be moved from ICU to the neuro floor as soon as a room is available. All this is AWESOME news. Her recovery so far has gone more smoothly and happened more quickly than ever before. She is currently in MRI being scanned to be sure things look good. They always do a post-op MRI to be sure they were exactly where they thought they were and removed what they wanted to remove. This is just routine. We hope to have the final path report before the day is over.

Catie knows who to work in the hospital! She's been pretty quiet this morning but she cracked me up when Dr. Hudgins came in. He was VERY pleased with how good she looked.
He was checking her out and asked her to wiggle her fingers. She wiggled the fingers on her right hand and he was moving on to the next step when she looked at him and said, "want to see the other hand too?" as she held up her left hand and wiggled those fingers. Don't tell me she doesn't know who writes the walking papers!!

Speaking of walking papers, if things continue as smoothly as they have thus far, we expect to be discharged tomorrow. We will probably crash at Ronald McDonald House for a night or 2 depending on how Catie is feeling and how brave we're feeling. I don't like to get too far away until she really starts perking up.

In our talk with Dr. Claire last night, we discussed further treatment. A lot of folks we've talked with have been curious to learn if there will be more treatment. There will be some sort of treatment even if today's path report confirms the good news we received yesterday. The good news is good news today should allow us to avoid the
very aggressive stem cell rescue. With good news today we will be looking at something much less aggressive, probably an oral chemo that can be done on an outpatient basis. Bring it on!! We can handle that. Different news for the path report would drastically change that, but we are hopeful for AWESOME news.

We will update with the final path report when we get it and we will let you know if there are any changes. Hopefully there will be no need for an update until I can post the (great) news of the final report.

Again, we cannot thank you enough for your support and your prayers... for sharing in our heartaches AND our rejoicing.
We continue to pray for healing and for no infections. With all the hope that we found yesterday, we know there are others who are in such a difficult place right now. Please, stop by and let Jay's (/ga/jay) family now that you are praying for him. He too has medulloblastoma and was diagnosed just 2 short weeks before Catie. He has a beautiful family and we continue to pray for God to bless them with a miracle.

Much love to all of you,
Tre', Jenny, and especially CATIE

P.S. Carlette... I have to admit, I'm wearing my silly socks again! They're driving me crazy, but they remind me of all the prayers being said, so they're staying on my feet all day today!! Thank you! Catie wore hers until she went back to surgery yesterday. When she came out she had an IV in one foot, so no sock there, but on the other one... oh yeah, that silly sock. And she'll tell you that it means somebody's praying for her!!

Thank you Diana (from TX right?) for the sweet gift. It's so soft and Catie loves the balloon!! You are too sweet!

Monday, January 9, 2006 10:43

I wasn't going to post anything else until tomorrow but after stopping by and finding an empty computer and reading all of your amazing entries, I just had to. The love you have shown our family today is remarkable. You will never know how much your support and prayers mean. We are hopeful for good news on the final pathology report. We know the news could change but we have HOPE that it will not. We will post tomorrow to let you know how the night was -- hourly neuro checks should make for loads and loads of sleep -- HAHAHA! That is quite all right with me though. Catie is really fighting taking oral meds -- even opted for a Tylenol suppository instead of the oral, ick! Please pray that this will be easier for her tonight, tomorrow and through the week. There are LOTS AND LOTS of oral meds in the days ahead. For now, the only oral meds are Tyl. and Advil alternating every 2 hours. But she gets very worked up about it. We'll post more tomorrow. I'm going to snuggle up and look forward to looking at the light every hour!!
Thank you again for everything today!
Jenny

Monday, January 9, 2006 9:24pm
Dr. Claire stopped in to check on Catie tonight. She is very encouraged by today's pathology reports but has told Jenny and Tre not to be overly excited until the final pathology reprts, which involve a more extensive biopsy, are completed and they have those results (Tuesday or Wednesday).
Jenny and Tre remain very hopeful and optimistic about the results of those reports.

Jenny said that a short while ago Catie told them and I quote "I want to go to the Ronald McDonald house." That's our girl! Jenny will post as soon as possible.
Keep Praying!
Lisa (for Jenny)


We are still reeling from the absolute best possible report we could have ever hoped for. We thank you for your prayers and we thank God for the blessings of today. After hearing the news, those of us gathered and prayed a prayer of tremendous thanksgiving. Oh how grateful we are.

Catie came out one ticked of girl. I believe she was hurting too. They gave her the strong stuff, fentynol (I know I spelled that wrong), as she's allergic to morphine. I thought she'd knock right out but she has just now fallen asleep. She wanted the iv's out, the catheter out, the pulse ox off, and the bp cuff off. I'm thankful she is resting now so that her body can heal. She wasn't a very camper but let us see glimpses of that feisty spirit as she teased her GaGa by giving her kisses away. I even saw that gleam in her eye for just a moment. I'm going to run b/c I don't want to miss the docs. We'll update more soon. Thank you for praying us through and for rejoicing with us as well. You guys are absolutely amazing and we are so thankful for you. Please pray she recovers well... no leakage or infections. And please pray for Jay (/ga/jay) and our buddy Jake (www.teamrivers.com).
Much love,
We'll keep you posted,
Jenny


Monday, January 9, 2006 2:59
Per Jenny: "PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!!"

This is D.D. Dixon updating for Jenny- Oh...shout it from the rooftops! Dr. Hudgins has just given them the most wonderful news!!! NO TUMOR! So far, every sample they have removed (and sent to pathology) has come back cancer-free! They will continue with some more detailed pathology but his initial indications......NO TUMOR! Catie is going to recovery now and Dr. Hudgins was on his way to check on her and make sure she is comfortable. Jenny said she would update again after Catie is in her room and stable. Getting to a computer in that hospital can be a challenge some times!

Dear friends....from the bottom of my heart.... DO NOT let anyone tell you miracles don't happen! Today... you have been witness to God's mercy and the power of prayer. Please continue to pray for Catie's comfort and Tre' and Jenny's strength and peace. What a day this has been! I am so happy to deliver good news!

1:20 pm
"So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it."
Hebrews 4:16
Good verse DD... Thanks!
We got word about 12:45 that Dr. Hudgins had just gotten started and she was doing just fine. The first 45 minutes of each hour wait are ok... the last 15 minutes take forever. We're coming up on the last 20 minutes of this hour and I can feel the time slowing down. Your words and your prayers continue to sustain us. Thank you...

Please also continue to pray for Jay... they need your prayers more than ever.
Jenny

Monday, January 9, 2006 11:16 AM \And it starts... They took her back about 20 minutes ago. She was quite loopy (and entertaining for that matter) thanks to the trusty Versad!

We saw Dr. Hudgins this morning. He explained that instead of just doing the regular pre-surgical MRI they will add the diffusion slides. They will then do the regular MRI and then put the slides together to draw the tumor on the regular slides. The regular slides are the slides used to guide him (if I understand correctly) and her tumor doesn't show up there so they had to add the extra step. He also told us that the risks for slow healing of the wound, leakage from the incision, infection, and hydrocephalus are higher this time b/c we've already done this twice. Please pray for her safety, for no cancer, and for no complications or infections. We're doing ok, but have to admit that this doesn't get any easier no matter if you've done it before or not. We feel your prayers and I know that God will be with them in the OR. They are in MRI right now. We will get a phone call once Dr. Hudgins gets started (probably in an hour or so) and then will get calls every hour until he finishes. We will update you as we have information.

Thank your for checking in and thank you for praying.
Much love,
Tre', Jenny, and Catie

Sunday, January 8, 2006 10:27 PM CST

We're here safe and sound. Catie, Tre', and GaGa are already snoozing, and hopefully I'm not far behind them. Our wake up call isn't too early. We'll update you when things get rolling. Please remember Dr. Hudgins, Baby Noor, and Catie. We pray for 2 completely successful surgeries. For more specific requests for Catie's surgery, look back in the journal history.

Thank you again to all of you who continue to show your support in so many ways. You're smoothing the way with your prayers.

Until tomorrow...
Tre', Jenny, and Catie

Saturday, January 7, 2006 10:19 PM CST

The only clothes we've packed are the ones that never got unpacked from our last trip!! That's ok though... we're not leaving till lunchtime so HOPEFULLY we can get it all done. There's only one load of laundry left, so packing shouldn't be to big of a deal.

We still haven't had the BIG talk with Catie, but being the perceptive girl she is, she's pretty much got things figured out. I told her on Friday that we were coming to Atlanta this week to go to the doctor. This isn't unusual as I usually tell her a couple of day before a trip that we're going. She looked at me and said... "to fix something in my head?" After I got the stunned look off my face I told her that yes that's why we were going. I felt her out a little to see if she wanted to talk or had anything else to say about it. She didn't seem to so we left it at that, b/c I really didn't want to go into the whole surgery thing that early... I didn't want it hanging over her head. I did reassure her about us being at the hospital with her and reminded her that if she was ever scared or worried about anything or if she hurt anywhere all she had to do was to tell us and we would help to make it better. Today, she was visiting at Aunt Lisa's house for a little while. The 2nd thing she said to Lisa, Dennis, and Ryan was, "I have to go get an owie on my head." Lisa said she said it so matter-of-factly and it just seemed like Catie thought this was info. they needed to know. So Catie and Lisa talked about how it would be ok and how much the doctors and nurses loved her... Catie seemed fine with it... it's all just so normal to her... which in some ways is great b/c we're not out of this warped hospital world yet, but in another way it makes me sad. I wish she didn't have to know all this and be so used to it. We'll talk tomorrow night with her ... a little about what it will be like going to sleep (just like radiation only I can't be right there with her) and when she wakes up. All that really matters right now is that she really does have an understanding and she seems ok with it.

We'll leave tomorrow and then we'll report to the hospital at 8:30 Monday morning. She's scheduled for surgery at 10:30. I don't know for sure how long surgery will last but I'm guessing 3-4 hours based on how things were this summer. We'll be in PICU for a day or 2 and then should be transitioned to the first floor (neuro nurses, here we come-- hook us up if you read this Amy =) ). This summer we were discharged in less than 48 hours. We're not in any rush to get out, but who know what will happen.

I haven't written a lot about the possible side effects from the surgery, b/c we are hopeful that she will do as well as last time. That said... please do pray that she handles things well... That she can talk when she wakes up and that she doesn't lose much in the way of motor skills. More than anything please pray for her safety during surgery and that there is not cancer... if there is cancer, please pray that Dr. Hudgins is able to remove every single cell.

I expect that we will update several times on Monday. They will call us hourly during surgery and we will try to keep you guys posted as well.

Thank you for praying for us. Please also continue to pray for Jay (/ga/jay) as his fight is so hard. Also, our buddy Jake (www.teamrivers.com) has been inpatient for several days with fevers and pain.

Thanks so much...
Tre', Jenny, and Catie

Friday, January 6, 2006 2:27 PM CST

First things first... please pray for Jay. He is battling an increasingly hard battle against the same beast that we are fighting. He and his family could definitely use your prayers and encouragement.

I can't believe it's Friday already. We've been keeping things pretty normal this week and trying to ignore the quickly approach date of the 9th. Tomorrow is our last full day at home before heading to Atlanta yet again. I have to admit, I wish this was a more routine trip. Yet I'm comforted in knowing that we truly believe this is the best course of action. We trust our doctors and know that she is in the best of hands. Surgery is scheduled for around 10:30 (Day surgery called today to let us know of the slight change in time). We will report to the hospital at 8:30. I know that so many of you are praying and we appreciate it so very much. So many of you have reached out to us in different ways this week and we are very grateful. Thank you to all of you who have called to check in on us, or posted or e-mailed us, thank you to all of you who have prayed and continue to do so. A special thanks to Carlette's Sunday School class, to Dawn for your help yesterday, and to the Ebenezer gals I had a chance to laugh with last night.

A quick update on the golf tournament. We are excited to announce that it will be held at a PGA tournament golf course -- The Westin Savannah Harbor Golf Resort and Spa . We haven't done the final nailing down of details, but more than likely the big day will be June 19. We have established sponsorship levels and hope to have those up on a website before long. Keep watching for news on how you can be a part!

With everything that's gone on in the last month, I never got around to posting many pics from Christmas, so I thought I'd throw in some today. We really had a great holiday.

We had a blast with lots of family over a couple of weeks. We didn't get to see everyone, but we did get to see lots of folks. Here is Catie with NaNa, Tre's grandmother at our house on Christmas Eve.


Here Catie helps my mom bake bread... Somehow Mom always manages to get out of the picture frame before I snap the pic.


Christmas morning was so much fun this year. Catie had fun checking out all the new fun stuff. Here she's tickling the ivories that Santa left. How he got that down the chimney, I don't know.


Here, you see her "thinking face" as she works on a new number puzzle.


And sometimes, you just don't have enough hands to do it all at once.


We spent New Year's weekend at Lake Oconee. Here Catie and Nikki (my sister) do yoga together.


Watching the fireworks was fun with Uncle John,


Aunt NikNik,


Keri, Aunt NikNik, and Momma


But nothing beats a kiss from Daddy!


Believe it or not, we're leaving out lots of pictures, but we won't bore you with the rest of the holiday album!! =)

Please continue to pray for Catie and for the doctors... we'll update during surgery on Monday if we don't before then.

Hugs to all,
Love,
Tre', Jenny, and Catie

Tuesday, January 3, 2006 9:56 PM CST

This will be a quick one, but I promise to try to do a real entry tomorrow night. We are in the midst of unpacking from our trip (got home yesterday), finding places for Christmas loot, washing clothes, cleaning house, etc. so we can be ready to leave again on Sunday.

Catie's surgery is scheduled for Monday at 11:00. She will be the 2nd surgery on Dr. Hudgins's schedule that morning. The first is Baby Noor from Iraq. If you watched the news much this weekend, you've probably seen Dr. Hudgins doing interviews. His office assured us that it is routine (how is brain surgery EVER routine) for him to do multiple surgeries daily. Catie will go to PICU after surgery and will probably remain there for a day or two before being transferred down to the first floor. She's heard us talking some about surgery, etc. but I don't think she really knows yet. Usually when she suspects something is up, she asks me questions and she hasn't done this yet. We'll be talking with her sometime on Sunday so that she is prepared, but doesn't have to worry about things too much ahead of time. We'll be taking all our trusty doctor stuff (the real deal... these child life specialists don't play!) to show her on her doll what all will be on her when she wakes up. This worked well last time. I expect a little more uneasiness from her this time b/c she is older and more mature than she was 6 months ago. As you pray for her healing and for safety through this surgery, please pray that she not be scared and that we are able to comfort her in just the way that she needs.

I've already gone longer than I meant too, so I'll go on a little more. Catie's hearing test was on Thursday. It showed a profound loss in the high tones. These are not "speech tones" but can make it harder to hear things when there is a lot of background noise. Her hearing in the frequencies where we hear speech are still normal! She is not in need of hearing aids at this point, but b/c the drop was so dramatic over the last 3 months (was normal in September), they will retest in a month. We hope her hearing does not change anymore, but, to be honest, if all we come out of this with is a couple of hearing aids and some balance issues, we'll be counting ourselves lucky.

I want to get some pictures up from the holidays and I'll try to do that in the next couple of days. For now I'll throw some up on the photo album page.

Please continue to pray... for the surgery, for good news from pathology, for wisdom regarding treatment decisions. It feels like we've been doing this forever... that's ok because I can't even consider the alternative, but some days it is tiring to think of starting treatment all over again.

Catie continues to feel well and is doing a pretty good job of just being a kid. Yesterday and today she has only taken one nap. She had been taking 2 a day ever since to whole sleeping thing started. The naps got shorter and shorter and now we're down to one. Dr. Claire said the Somnolence Syndrome could be over now, but also warned that it could resurface. We're just glad that she's feeling so great and eating so well. Right now she is especially enjoying playing her new Trouble and Dora Uno games.

We'll try to update again soon!

Thanks so very much for checking in,
Jenny

Friday PM

A quick update before we hit the road... STABLE!!!! For this we are truly grateful. It will carry us to Jan. 9th when hopefully we will get this monster out of her head for good!
We'll update the first of the week.
Love to all... thank you for sustaining us with you prayers. Please don't stop.
Love,
Jenny
P.S. Thanks for everything today Andrea!

Thursday AM

Hi guys,
The MRI is scheduled for tomorrow morning at 7:00. We report at 6:00. It will be of the brain and spine. Please pray there is no growth and that there are no new spots. This is so very important for all that lies ahead. We will update tomorrow with results.
Love,
Tre', Jenny, and Catie

Wednesday, December 28, 2005 2:46 PM CST
Another change... or better yet... LET'S HOPE AND PRAY THAT THE THIRD TIME'S A CHARM...

Well... no chemo today... Catie will be undergoing her third craniotomy (sp?) to remove any remaining tumor from her brain on Monday, January 9. Dr. Hudgins will do the surgery. We have pre-op and an audiogram tomorrow. The audiogram is our "routine" one that is done every 3 months. I'll update more, possibly tonight, but I wanted to go ahead and post so that your prayers could start...

*that the tumor has not grown and will not grow as we wait for the next week and a half
*for Catie's safety and well-being during surgery
*for her comfort, emotionally and physically
*that Dr. Hudgins is able to remove all of the tumor
*that we are able to glean the knowledge we need to make decisions from the tissue studied after the tumor is removed
*they think this is tumor, but we pray it is not... we pray it is scar tissue or that is is more low grade than it was when we started
*for wisdom for our doctors and discernment for us as we make decisions

We will have another MRI next week-- pray for no growth or new spots.

We now have a plan... We'll update more when we can. Thank you for checking in.
Love,
Jenny

Monday, December 26, 2005 9:38 PM CST

Just a quick update to say we are doing well. Christmas has been an absolute blast! Catie was feeling well -- her naps have been longer than normal and today she squeezed in 2 and a half, but thank goodness she's not sleeping 16 hours a day like she was last week.

We put up all our Christmas decorations today... I have to admit I felt like a bit of a Grinch putting it up that quickly, but we leave on Wednesday and won't be back until Monday, so I wanted to go ahead and get it done. We see Dr. Claire on Wednesday and I suspect we'll start chemo this week. We plan on squeezing in a visit to the Atlanta Aquarium on Thursday (I CAN'T WAIT!) and then we'll do Christmas with my side of the family Thursday through the weekend. I promise to try to do a real update complete with pictures before we go!! Tonight... headed to bed!

I hope your holiday season is as wonderful as ours...

Special prayers for Jay (/ga/jay) and Savannah (/ga/savannah).

Love to all,
Jenny

Friday, December 23, 2005 9:21 PM CST

After sleeping for at least 16 hours a day for 3 days, Catie's sleeping habits were much more normal today. This syndrome is a strange one. It can last for 3 days or for months. It can wax and wane... let's hope that Catie had the 3 and a half day variety and that she continues to feel like herself. Regardless, we remain relieved that the CT Scan results on Wednesday were good... It was great to see her up and about today, playing and having a good time. It's our last night with Santa's elf visiting our house. Santa will pick him up tomorrow when he stops at our house. Catie has wondered aloud several times today, "I wonder what the elf is going to do tonight..." We have thoroughly enjoyed our little visitor and I feel sure we'll invite him back again next year!

Please remember that there are many families spending the holidays missing their children or sleeping in a hospital bed. Pray for them and drop by their sites to let them know you are thinking of them (click our friends link above). Children facing extremely tough days this weekend include Jay (/ga/jay) and John Michael (/ga/johnmichael). It's a shame that cancer doesn't take a break for holidays...

We're all snuggled up in the great room w/ Christmas lights on and a good fire burning... Hope you find snuggle time this weekend too!

Love to all,
Jenny

Wednesday, December 21, 2005 9:02 PM CST

Oh how I love boring days! Too bad today wasn't one of them!! I'll give you the benefit of knowing that at the end of day... looks like things are just fine... wish I had had that little piece of info this morning!

Catie started showing signs of being more sleepy than normal on Monday. I wrote it off to a busy weekend and being up to late Sunday night. Yesterday I was concerned when she woke up moved to the couch and went back to sleep until 11:00. She was back asleep by 3:00 and slept for about a hour. I was concerned when I went to bed last night and realized she had only been awake for 8 hours yesterday instead of her usual 13 or so. I decided to wait until morning to see how she was before hitting the panic button. Well this morning she got up early and was in a good mood... good sign... she dozed with me a little... ok, let's see how this goes... I jumped in the shower around 8:30 and got out to find her sound asleep on the couch. She was still snoozing at 10:30. She has not fallen asleep on her own (except in her car seat) since before she was diagnosed... ok, time to worry.

Long story short, we think she has somnolence syndrome. What's that you ask? Well, here's some info. from a site one of our favorite nurses sent us...

Two to 8 weeks after radiation therapy has ended, your child may start to have symptoms such as feeling drowsy, tired, irritable, or sleeping for hours. He may also have headaches, vomiting, a low-grade fever, and a loss of appetite. You may also see some of the same symptoms that the tumour caused.

These symptoms are part of a condition called somnolence syndrome. Some parents find this upsetting, but the symptoms will usually go away in about two to four weeks. The symptoms are believed to be caused by damage to the covering of the nerve cells.

There are no long-term effects.

Stay in touch with your treatment team if you are worried about your child’s symptoms. If the symptoms are severe, dexamethasone may be given to help.

Extreme fatigue or sleepiness is one of those symptoms on the list that sends brain tumor parents over the edge. (If you're a leukemia or neuroblastoma parent think unexplained fever w/ random bone pain). We ended up getting a CT done in Savannah. Thanks to the Backus Hem/Onc clinic for helping everything happen so quickly!! We were in the clinic, off to CT, back to clinic for deaccess, and on our way home in 2 1/2 hours!! Thank you so very much! The CT looked good. We weren't looking for tumor as much as we were looking for symptoms you'd see from rapid tumor growth such as enlarged ventricles or evidence of tumor in the 4th ventricle. All of that looked good.

So... we let her sleep when she needs to, push fluids and food when she's awake, and that's about it. Her eating has been a little off. Dr. Claire said that is b/c she's not using as much energy during the day, so her body doesn't need as many calories, thus she doesn't feel hungry.

We can SO live with this syndrome for a while, especially when you consider all the other unpleasant possibilities that went through my head today! Please pray that this is all that's going on in that little head of hers and that there is no tumor growth or spread. Pray that whatever we choose to treat with will be effective in ridding her of this mess for good so she can get about the business of just being a kid.

It's looking like our first punch at the tumor this time will not be surgery. Dr. Claire is mainly considering temador and etopiside, both oral medications. We've never used temador, but we have used IV etoposide. We plan on an Atlanta trip next week to finish our discussions about options and to start treatment. We'll keep you posted as always.

Even though I didn't chase Catie around nearly as much today as I normally do, I'm am worn out. Worry seems to have that effect on a person. So... it's off to bed after I see what mischief the elf might be getting into tonight. Perhaps he can get Catie's earrings back in as she sleeps (since she was scared to put them back in after we had to take them out for CT). =)

Hope things are happy in your house tonight,
Love,
Tre', Jenny, and Catie

P.S. The elf couldn't get her earrings back in... looks like we may be losing those holes!

Monday, Dec. 19, 11:15PM

Well, we don't have a plan yet, but we talked to Dr. Claire tonight. She has had a hard time getting in touch with Dr. Hudgins, but he should be at brain tumor clinic tomorrow and they will be able to talk. The radiation oncologists on tumor board seemed to lean towards waiting and watching. Catie's radiation oncologist wasn't there, but he's seen the scans. Given the information we have so far, our 2 big questions tonight were...

1. Could the spot that remains be scar tissue? This summer in surgery, the first chunk that Dr. Hudgins took out (which is what could be seen on the scan if I understand correctly) was scar tissue. The tumor cells were behind it. The "spot" we are looking at looks very similar to the one that came out -- remember that it was there in July, the outline of it just didn't show up well. A logical question to ask after that, is why it is showing up brighter now? Could it be b/c of radiation or b/c it has grown/changed? This is a surgical question in many ways, so our two docs will talk about this.

2. Why would we wait and watch at this point? Catie went into radiation w/ visible tumor (though we didn't know it at the time). Even if the spot there now is scar tissue (which we don't know -- it could just as easily be tumor), the other "mystery spot" was probably tumor. We can't prove it, but there is no other way to explain it away. So, we went into radiation w/ visible tumor. To treat visible tumor with only 6 weeks of focal radiation is pretty much unheard of. Even newly diagnosed medulloblastoma kids (over 3) who have no visible tumor typically get 6 weeks of focal and craniospinal radiation and then 48 weeks of chemo. I'm not saying we need 48 weeks of chemo, but I'm not comfortable saying we've done enough. Dr. Claire isn't either. The watch and wait opinion is what some folks in tumor board recommended, but she said she doesn't feel that's enough either.

So... hopefully, we will get another phone call tomorrow after Dr. Claire and Hudgins talk. I am more hopeful that we will be home for Christmas at this point which is nice. I am getting antsy and want to do something pretty immediately after Christmas, and I think that will happen.

And now for some truly AWESOME news! Catie's spinal tap last from last week came back NEGATIVE!! No cancer cells in her spinal fluid!! We are so grateful!

We will update with more when we know more. Please continue to pray... that the tumor is not growing or spreading... for wisdom... for Catie's healing here on earth...

Also, John Michael (/ga/johnmichael) and Savannah (/fl/savannah) could use your prayers and encouragement. Savannah has just relapsed with medulloblastoma (the same thing Catie has).
Love to all,
Jenny

P.S. Thanks Claire O. for helping me get the Rally info straight!!

Sunday, December 18, 2005 7:52 PM CST
Hi Guys!
Just a quick note to let you know that we're still waiting. I hope to have some news (if not a plan, at least an idea of where we are) tomorrow. The waiting is hard, but we try hard to live each day. Catie doesn't know that we're waiting, and she doesn't need to know right now. She needs to enjoy all of the anticipation and joy of the Christmas season. She's doing a good job of that! We have an elf who has come to stay with us for the week. He has to be back to the North Pole by Christmas Eve to help Santa, but he's with us for now. He's very well behaved during the day, but gets into lots of mischief at night while we're sleeping!! Catie gets a kick out of it (and wouldn't put her piece of candy down this morning b/c she was scared the elf would get it!!).

When you get a chance, check out Rally Foundation. It's a great organization that's doing wonderful work to support research for childhood cancer. Rally Foundation will have a national launch this spring with Big League Chew, Mizuno, Tom Glavine and John Smoltz. Contact them to find out how you, your school or business can join the Rally for Research! The money that grassroots Rally Teams raise goes to support all phases of childhood cancer research from science at the bench (very early research) to Stage 1, Stage 2, Stage 3 and Stage 4 clinical trials. Also, with Rally it is possible to keep money you raise in your area or to select trials that would be meaningful to your Rally Team. If you still have some Christmas or Hanukkah shopping to do, think about the Rally With Catie. All money raised goes to support the Rally Foundation and childhood cancer research.

We will update more soon. We're trying to get everything straight at the house and all our Christmas stuff finished in case we have to head north to Atlanta.

There is more to write, and maybe I will later, but for now, I need to get some stuff done.

Love to all,
Jenny

Thursday, December 15, 2005 9:27 PM CST

Ok -- you guys are so in trouble... I've learned to (finally) upload pictures into journal entries. Right now I'm killing time in case we get "a phone call" with info in the next little bit, so I thought I'd try it out (you know instead of wrapping presents, cleaning the kitchen floor, scrubbing the tub... all those things that I SHOULD be doing.

So what do you do when you're trying to stay busy and not think about all that's going on? Well, at this time of year... we bake cookies... Catie had a blast.



It's like Play-Dough, only better b/c you can eat it...



and you can have a flour fight...



and then... when your mom is trying to get a picture of you eating your freshly baked cookie to complete her scrapbook page, you run, run, run as fast as you can...



You bake cookies with friends...



and then... when you just can't bake anymore, you crash...




No new news... Looking at her in all these pics it's hard to believe that she still has cancer... She is going full steam and I'm so glad... She has a yucky sounding cough, so we're doing breathing treatments and hoping it clears up.

We will update when we know something... please continue to pray...

Jenny

P.S. For those who liked the book we shared this morning, I found out that there is also a Christmas one called You Are My Miracle by the same author. Got to admit... just ordered it off of Amazon!

Thanks to Diana for e-mailing me HTML commands cheat sheet!! It looks like it worked!!

Wed. PM

We made it home this afternoon. No new news yet. Tumor board meets tomorrow. We may have some info then, or it may be Monday.

Every Christmas we buy Catie a special book. It's usually a book that finds me and I immediately know it's "the one." And tonight, this year's book found me. Thought I'd share the words with you. The book is "You Are My I Love You" (sorry, still webpage stupid and don't know how to underline) by Maryann K. Cusimano.

I am your parent; you are my child.
I am your quiet place; you are my wild.

I am your calm face; you are my giggle.
I am your wait; you are my wiggle.

I am your carriage ride; you are my king.
I am your push; you are my swing.

I am your audience; you are my clown.
I am your London Bridge; you are my falling down.

I am your carrot sticks; you are my licorice.
I am your dandelion; you are my first wish.

I am your water wings; you are my deep.
I am your open arms; you are my running leap.

I am your way home; you are my new path.
I am your dry towel; you are my wet bath.

I am your dinner; you are my chocolate cake.
I am your bedtime; you are my wide awake.

I am your finish line; you are my race.
I am your praying hands; you are my saying grace.

I am your favorite book; you are my new lines.
I am your night-light; you are my starshine.

I am your lullaby; you are my peekaboo.
I am your good-night kiss; you are my I love you.

Thank you so much for your prayers and concern and encouragement. It's something that helps and that we need. We'll update when we have news.

Hey -- check in with our pal Kendrie who FINISHES TREATMENT TOMORROW!!!!!! Kendrie (/ga/kendrie), we're so very, very proud of you!! Sure hope you get to eat a big bowl of ice cream right before bed Friday night since you will be FREE from milk restrictions now!!!!! Love you guys!
Jenny

Tuesday, December 13, 2005 10:30PM
Hi all. Sorry it's taken us so long to get a good update in. Thanks to Lisa for doing one earlier today. This will be short b/c Catie's still up and b/c I can hardly keep my eyes open.

The word on the scan is STABLE. This is good... not as good as it could have been, but also a heck of a lot better than it could have been. Dr. Claire considers where we're at to be disease "progression." I don't know for sure, but I think we use the word progression b/c technically she's never been completely free of cancer. However... the fact that it did not grow in the last 3 weeks is very good. The fact that the cancer has become only slightly plumper and not grown like crazy despite the fact that it has been there all along is good. We believe that the spot at the primary tumor site did not grow at all until just before her surgery in July. We do think that the tumor that remains at this site was there then, we just didn't get it all. The other spot that was at the back of her brain is gone except for a pinpoint. That spot, upon review of ALL scans has actually been there since March. Her tumors DO NOT show up well at all on regular MRI slides. They are visible mainly (and sometimes only) on effusion slides. Sometimes even then you cannot see them unless you are shown a picture of what you're looking for. Hard to explain, but we looked at slides for an hour and a half tonight and it's true. These types of slides didn't exist until 5 or 6 years ago, so we are thankful we have them now. Otherwise, we might still be thinking life was hunky dory as the tumor grew.

Dr. Claire wants to do surgery. We have to see what Dr. Hudgins opinion is. She will call us after talking to with him and after presenting Catie's case to tumor board on Thursday. The likelihood is that we will do something before Christmas... just what remains to be seen. Please pray for the doctors as they talk and make decisions.

I do not know if any of this makes sense. Tonight I'm wiped out -- feels like the last 3 weeks have caught up with me. I'll write again once we get home tomorrow. If I've explained anything wrong or something doesn't make sense, I'll try to set the record straight then. Key points are: We're thankful it didn't grow or spread over the last 3 weeks. We're thankful we have many treatment options. We're praying for wisdom for the docs and an easy time for Catie. We'r praying she can continue to be strong and tough.... We're praying for her to be able to stand having her port hooked up (she hates this right now and will only lay flat on her back w/o moving if she's hooked up)... Strength for all of us and her healing here on earth.

thank you for your amazing support... going to bed... w/o proofreading...
Love to all,
Jenny

Tuesday, December 13, 2005 4:33 PM CST

Catie's scan was late getting started today. They did not begin until around 2:00. Dr. Claire has not had time to study the new MRI results as of yet, but did say that based on a careful study of old scans, she is calling the tumor "progression" but not necessarily relapse. Jenny does believe that based on her conversation today with Dr. Claire there will be some type of treatment beginning before Christmas.

Jenny and Tre' hope to be able to meet with Dr. Claire and Dr. Hudgins (the neurosurgeon) tonight to discuss the findings of today’s scan. She will post more information tonight if possible. KEEP PRAYING!!!!

Tuesday, December 6, 2005 9:17 PM CST

NEW PICS ADDED FRI AM

Hi guys!
We're doing well. Not sure if we're anxious for next Tuesday to get here or hoping it takes forever. Catie has a cold, but is otherwise doing great.

There's lots to write, but the words aren't coming tonight. When the words do come though, it will be about waiting... waiting... A blessing and a curse... waiting... But... you'll have to "wait" on all those thoughts... maybe tomorrow... For now, you should check out the poem on John Michael's site on the subject... pretty incredible.

We are so grateful for the prayertime we had for Catie and John Michael on Sunday night. Amanda, thanks so much for suggesting it. The response was wonderful and we are so thankul to all of you who participated. Believe me when I say that we feel your prayers... whenever they come. I do not know how we would do this without your prayers and support.

I'm (once again) insanely behind on e-mails. Please know we're working on it... sometimes the days just wear you out... waiting wears you out too. I'll try to catch up by the end of the week.

I spoke w/ Dr. Hudgins' and Dr. Claire's offices today. Hudgins' office said not to pack for surgery, but that we'll discuss surgical options while we're there if necessary. Dr. Claire said there's no way to predict a schedule right now as there are just too many possibilities. Here's hoping and praying they are GOOD possibilities. So we'll pack for a few days to be safe. Please continue to pray that her scan and her LP bring GOOD, or better yet, AMAZINGLY GOOD results. Scans (and hopefully her LP) will be on Tuesday, Dec. 13th @ 1:00.

I've been reminded in recent days that God's timing is perfect, He hears our prayers even when it feels like He doesn't, and He's still a God of miracles and surprises. More on that later... it all ties in with the waiting thing.

CATIE'S QUOTE OF THE WEEK
Catie was showing Tre' something in a catalog that she wanted Santa to bring her. He asked her what she had to be for Santa to come see her and she answered... "patient." Hmm... she's even getting into the waiting thing!! =) Cracked us up!!

Thanks for checking in,
Jenny

P.S. We met tonight for the first time to begin planning the 2006 Cure Classic Golf Tournament benefitting CureSearch. We have some exciting things in the works and are very hopeful that this tournament will raise a great deal of money! More to come. We'll once again be collecting kids' pictures and stories to share with our golfers, so parents send stuff to us when you get a chance! Thanks to all our committee members. Several folks have e-mailed and asked how you can help. I'll be getting back to you soon, I was waiting for this meeting till we had more specifics nailed down.

Friday AM

One of our favorite nurses (and very good friend) asked us to post this for Catie and John Michael. Thanks A, we love you!

Special Request: Candle Prayer Vigil this Sunday 12/4/05

Hi fellow Prayer Warriors -
As we have all read in the updates Catie and John Michael have received some difficult news lately regarding their conditions. To help them weather this roller coaster ride - let's all rally together and light a candle whereever you may be this Sunday night (12/4) at 7pm EST and say a special prayer in their honor (and their families). Please leave a message in the guestbook to let them know you have participated - these two courageous cancer warriors have weathered so much and it looks like their ride may not be over. What a wonderful way to reinforce how many of us are out there to help in their honor any way we can. Thanks for helping them feel honored.

Thursday, December 1, 2005 12:52 PM CST
Hi Guys!
I talked with Dr. Claire late Tuesday night. I've put off updating b/c things just seem so complicated. The good news is (and this isn't going to sound good, but it is) the spot we're looking at has been there since at least July when we had surgery. Again, it appeared to just be scar tissue, but now that the other scar tissue has cleared it appears to be tumor. It's frustrating that we didn't get it out in July, but it's good, very good, that this isn't new. The "spot" appears to be a bit plumper, but we don't know for sure. I don't know if you remember the analogy of slicing a lemon from before, but think about slicing a lemon through the center (across, not up and down). It appears to be smaller sliced that way than it does if you slice it diagnoally from the top right to the bottom left. The size of the lemon doesn't change, but it appears to depending on how you slice it. Dr. Claire isn't convinced the spot is bigger, but it may be just slightly larger. The hope is that the radiation is killing it as it should still be working.

We will rescan on Tuesday, December 13 at 1:00. We hope to meet with Dr. Claire and possibly Dr. Hudgins following her scan. We will also need another spinal tap (LP) to be sure there are no cancer cells there. Good results on the scan and the LP are both huge. Bad cells in the LP would be a HUGE blow. If the tumor appears to be the same size or larger the next likely option would be surgery. I do not know a timetable on this, but I would hope to do it quickly. I very much want to be home for Christmas. I have a call in to Dr. Hudgins office and expect to hear back from them at the first of the week to see what their feelings are.

Regardless of what we see on the scan we are in for more treatment. We're not sure exactly what, but we've discussed gamma knife, Accutane, Temazolemide (sp?), single or triple stem cell rescue... that's the biggies I can think of.

We're staying pretty busy, spending a good bit of time at home. The weather has been gorgeous, so we've been getting good afternoon playtime outside in the sandbox and playhouse. Thanks for continuing to check in and continuing to pray. We continue to need your prayers more than anything. Your encouragement in cards and guestbook messages goes a long way. Thank you for caring about our daughter and our family.

Much love,
Jenny

Monday, November 28, 2005 1:41 PM CST

NEW PICTURES ADDED MONDAY NIGHT

I was just reading back through some old e-mails and found the words to a song that my dear friend Erin sent me. Thought I'd share them with you. I *think* the song in by Sara Groves.

I do not know how I am to pray for this child,
As a mother I don't want my baby denied,
But in the waiting... in the waiting
I learned to hold on to the heart of God.

Every instinct in me wants to shield him from
pain,
take the arrows of misery, heartache and blame,
But in the sorrow... in the sorrow
I learned to hold on to the heart of God.

(piano interlude)

I only have two eyes, be all seeing.

I only have two hands, be everywhere.

I do not know enough, be all knowing.

I give my baby up.. into your care.

And I do not know how I am to pray for this child,
want to guard him from everything wicked and
wild,
But in the trial... in the trial
I learned to hold on.....
and in the trial... in your trials you'll learn
to hang on to the heart of God.

So true... sometimes things are so big, I don't even know how to pray to protect her. But He knows, and even though it's hard to imagine, He loves her even more than we do...

UPDATE FROM EARLIER
We're still here and we're hanging tough. Catie is feeling great and is enjoying showing off her brand new EARRINGS!! When we finished treatment a couple of weeks ago we told her she could get her ears pierced if she wanted. She's said several times since then that she wants to, but when we get to the mall she changes her mind. No big deal... I figure she's been stuck enough without a choice -- this was something she needed to decide she wanted on her own. Well yesterday, she decided, was the day... I asked if she wanted to get her ears pierced (there was a Claire's in the shopping center we were in) and she said yes and then asked for her magic cream. I must have asked if she was sure 20 times, reminded her it was going to hurt even w/ magic cream, but she still wanted them. I was certain she was going to change her mind when we got to Claire's, but she had made up her mind. She was getting it done. She cried a little, but recovered quickly and has been reporting that it only hurt "a little bit." She has been thrilled with me coming at her to clean them, but she's enjoying showing them off.

We're trying to stay busy without straying too far from home for too long. Something about home just feels best and safest. Right now it's our haven. Many folks have been amazing to us and we are so grateful. I'm so insanely behind on thank you notes that it's not even remotely funny, so if you're one of the folks we haven't jotted a note to, please know that we still so appreciate you. There's is something really strange about this world of limbo and up and down that keeps your brain from working very efficiently and getting things done. I find it quite odd that I can keep most of the medical info. straight in my head, but forget to do the simple stuff like put the leftover pizza in the fridge or respond to an e-mail I got earlier in the day.

One of the things we're doing this week is trying to get a committee together for our annual CURE Classic Golf Tournament. We will have our first meeting next week. If you are interested in helping out, please e-mail me (address at bottom of page) and let me know. Or if you own a business and are interested in helping out, please let me know. We'll be posting more info soon. A HUGE thanks to James Dasher who has agreed to head up the committee since we don't know where we're going to be when for the next few months. We so appreciate his willingness to step up to the plate so the tournament can go on and the much needed funds for research can be raised. We are going to be ambitious this year, so please let us know if you can help.

We're still waiting on the date for our MRI, but the way I look at it, we're down to 2 weeks and counting. Waiting is not easy, but we are doing our best to wait in peace and we are holding tight to Jeremiah 29:11...

As you continue to pray for Catie, please remember our good friend John Michael (/ga/johnmichael) as well. They received more difficult news this week and the blows are just getting hard to take. They have had such a hard road and really need some encouragement right now. The sucker punch that tough news delivers can really knock you off your feet.

Thank you so much for your continued encouragement... Your words and your prayers continue sustain us. We'll keep you posted on how things are going.
Much love,
Jenny

Thursday, November 24, 2005 4:12 PM CST

NEW PICTURES ADDED ON WEDNESDAY

SEE JOURNAL HISTORY IF YOU HAVEN'T READ OUR SCAN NEWS (THAT WASN'T NEARLY AS BORING AS WE HOPED)

Happy Thanksgiving to all! We hope your day has been a good one and that you've been able to spend it with those you love. Ours has been nice and we've definitely eaten our share.

Sunday night we went to a Thanksgiving service in our community. Now remember, Sunday night was our "scan eve" and things were still pretty hunky dory in our corner of the world. Finishing treatment and living a week and a half of normalcy had us feeling great. We had attended church and Catie had gotten to go to children's choir that night. I was feeling so very, very thankful and happy. As the different choirs sang beautiful songs and as we worshipped together I felt the tears of gratefulness well up many times. As I pondered our position I wondered if I would be thankful if the next day's scans were not what we so wanted. It didn't take much thinking for me to look at the last 3 years and the blessings that have been there. Catie's 2 plus years of treatment went so much better than I could have ever hoped. She had only 5 fevers -- not bad for a healthy child, much less one with very little immune system the majority of the time. We did our share of hospital time, but most visits were planned and expected, always a plus. Catie felt SO VERY GOOD for all but just a few day during that course of treatment. She laughed, she loved, she learned to walk, she teased us, she spent a great deal of the summer at the beach, we lived full in so many ways.
So, I decided on Sunday night that yes... if we didn't get the results we wanted, I could and would be thankful for the many, many blessings. I almost came here to write about it, but decided just THINKING I would feel that way when things were so great wouldn't really be fair for me to write b/c you don't always end up feeling the way you think you're going to feel.

And here we are... Thanksgiving Day, and we got the results we didn't want... I can honestly say that I am very, very thankful... for all the things mentioned above and for so many others... Somewhere this week I read or heard someone say that thankfulness can be present even if happiness is not. I think that's where I find myself today. I'm not feeling the super happy vibe today as my heart is very heavy. Returning tumor is very bad and is a cause for big time concern. However... I am still so very thankful. I pray that God always gives me the eyes to see the blessings He places in my life.

Today the worries have really set in for me. After the initial shock and tears that came with Tuesday's news, I went into the "get the word out" mode. It seemed to help to share the news b/c then others were helping with the load. Yesterday was busy -- cleaning out closets and drawers (controlling the things I can control) and shopping and meeting the newest member of our family (check out pictures in the photo album of Catie and baby Claire)... Today has been busy too, but I've found my thoughts wandering to places that aren't pleasant. Hopefully we can awake refreshed and renewed tomorrow.

Coming home on Tuesday night we travelled with John Michael and his family (/ga/johnmichael). They had kind of a rough day at the clinic in Egleston, so we decided to travel together. Kim (JM's mom) road w/ us to Macon while her mom drove JM. I think it was good for both Kim and I to be in the car together and to share all that was on our hearts. Please stop by their site and give them some encouragement if you have a chance.

When we stopped in Macon, Catie got in the car w/ JM, Kim and Ms. Deb (Kim's mom) while I ran to the restroom. Kim said that when she got in the car, she asked JM how he was feeling. Then she said... "I'm not sick anymore." I've never heard her say this before and my heart just broke when I heard that she had.

Today when we got home I was putting her on the couch for a rest and she looked at me and said, "I have to get more shots Momma?" (I think that in some way this was her way of asking about stuff this week.) I looked at her for a moment and then told her that yes, we might have to. I told her we would talk to Dr. Claire and see. She asked me if she had to get it now and I told her no. Then she said, "In 2 weeks Momma?" I reassured her that we would check with Dr. Claire and find out." I then asked her if she had overheard us talking. She said, "uh huh." I asked her if she was worried about anything and she said no. So we made a deal that she'd tell me if she was or if anything hurt or she felt bad. We've tried to be careful about talking about things this week in front of her, but she is just so perceptive. I have decided (actually I had already decided before this conversation) that she will not be in on discussions unless there are some things she needs to know or if there are some places we can give her choices about things so she has a little control. I know she has to deal with this, and needs some information... but she is just 3 and we need to be protect her from what we can. She doesn't need to worry unnecessarily.

I really didn't mean to go into all that tonight, but her question just caught me off guard. I sure hope you're snuggled up w/ folks you love and that you're day has been a great one!

Love to all,
Jenny

Specific prayer requests...
*For Catie's earthly healing
*That this spot or tumor or whatever it is disappears
*Wisdom for the docs, esp. Dr. Claire and Dr. Hudgins
*For this spot to not grow rapidly over then next 2 and 1/2 weeks (this is one of my biggest fears)
*For us to ENJOY this time free of docs and to put things out of our mind as much as possible
*For her body to be able to handle whatever it is we may have to put her through
*For strength for all of us

P.S. Thank you so very, very much for your messages. You have no idea how many times we have checked the guestbook over the last 2 days. Your words help ease the burden and remind us that we're not alone and that others are praying for our girl.

Tuesday, November 22, 2005 8:33 PM CST

NEW PICTURES ADDED WEDNESDAY 11/23

And now for the journal entry I never wanted to write...

It's been a very long day. We've just gotten home. I know we promised results on scans last night, but we didn't get them until this morning. Her scan didn't finish until 6:00 yesterday so Dr. Claire didn't get all the final results until midnight. She opted to let us get a good night's rest as she knew we'd be in first thing this morning for brain tumor clinic.

Dr. Hudgins came in first... the poor guy has given us more bad news than he ever should have had to or than we should have ever had to hear. I knew the moment he had Catie play with Lynn (his nurse) and aske me to "come look at something" with him. You NEVER want "something" to look at on a scan.

And there it was... a little white almost circle near the original tumor bed. It looks very suspicious, very much like tumor. Looking back on the last scans, it's actually a little visible there. But... on the last scan there was still so much surgical "gunk" (for lack of a better term) there that nothing looked very normal. That close to surgery, it's very normal for things to not look normal. Nothing stood out there though. I looked at it (the old scan) today, and I can see it after having seen today's scan where the "gunk" has cleared up some, but hindsight is 20/20. If I hadn't seen today's scan first, I don't think I would have been able to see it on the last scan. Many, many people looked at that last scan and didn't see anything that jumped out... but on yesterday's scan... something did. Actually there was another suspicious spot on the last scan, but it is totally gone now. What was it? tumor? killed by radiation? Who knows... that's the suspicion though. I hope this paragraph makes since.

So... what now? Three weeks we wait. The radiation is still working, so the hope is that this spot goes away like the other one did. I asked Dr. Hudgins and Dr. Claire what their gut feeling was and they both said they suspect tumor. Dr. Claire wants Hudgins to go in and take it out if it's still there when we rescan in 3 weeks. Fine by me. I so hate the thought of putting her through that CRAP again, but I hate the thought of tumor sitting there in her head, or worse -- growing in her head. Regardless of what happens we will probably do more treatment. Perhaps oral (Accutane or Temazolamide (sp?)), perhaps stem cell rescue... Gamma knife was tossed out today. We haven't thoroughly discussed options as we spent a great deal of time looking at and comparing scans. The good news is, it doesn't appear to have grown a great deal when compared to August's scan. The thing that's hard about radiology though is that you're never comparing apples to apples. The slices of the pictures they take are at different angles from scan to scan, so it's very hard to get an accurate comparison.

Please pray for us. We need your prayers more than ever. Please know that we very much appreciate your notes and your encouragement. If we don't get right back to you, please do not think it's b/c we're not grateful, for we are so very grateful, but we are also tired. We thought we finally had the chance to get off this roller coaster, at least for a while... but we we're really just click-clacking up one giant hill. For me, I feel the need to just kind of hole up for a day or two to get my bearings back. When I laid down w/ Catie for her nap today, I snuggled up close wished that we could just lay their snuggled up and peaceful forever. I hate the thought of what probably lies ahead w/ more treatment, but I know that it is a place we will probably have to go. So please continue to pray for us. I know He's gone there ahead of us, just as He has for all of this journey, but I just wish our road was going in an easier direction than it looks to be headed.

A big thanks to all the folks who were so great today. To the ladies at the clinic who took Catie so I could have "a moment" (are they ever going to build a padded screaming room at that hospital? they so need one), to Andrea, Marshall, and Allison for entertaining Catie so that I could meet with Dr. Claire, to Jill for hunting me down, to Dad for stopping by, To Kristin and Andrea for being willing to make a long trip, to Kim for company on the way to Macon (turns out John Michael, Kim (his mom), and his grandmother were heading home from Atlanta at about the same time we were), and to the other folks who were so great throughout the day. Thanks to Dr. Claire for being who you are no matter how little sleep you've had... Your compassion continues to touch our hearts and we can't imagine anyone else being Catie's doctor. We love all of you guys and we're so thankful for each one of you.

Catie's snuggled up under the down comforter w/ Tre', so I think I'm about to turn in to. She seems to be feeling great -- you sure can't tell a thing to look at her. Please pray for for this to NOT be cancer or anything else harmful (somehow, someway),wisdom for the docs, particularly Dr. Claire and Dr. Hudgins, for agreement in decisions, for Catie's earthly healing, for her happiness and ability to handle everything, and for our strength for the journey.

Love to all, you know we'll update soon,
Jenny

Friday, November 18, 2005 7:13 AM CST

Hi guys! We are doing great! It has been so nice to be home, in our own beds, doing things "normal" folks do. This week we've done lots of catching up, dentist visits, haircuts (for me, NOT Catie =) ), putting up summer clothes (even though it was still in the 80's the first half of the week)... We've braved the germ-filled world more than we have since Catie was diagnosed. Her week included a trip to story time at the library, playtime at a McDonalds play land (we'll be skipping that next time, as it was too germy -- ugghh), a trip to the SoftPlay at the mall, a playdate with friends, and Disney on Ice. She LOVED Disney on Ice! It was about thirty minutes too long (or maybe I should say too late as it didn't start until 7:30) for her, but she loved the first hour and a half. I've joined the Y b/c now she can stay in the room with other kids while I work out. After my first Pilates class yesterday, I can hardly move today (should make the big Christmas shopping trip we have planned tonight interesting). Normal is so very, very nice.

The only news on the medical front is that Catie has an MRI on Monday at 3:00. It should be loads of fun being NPO (not being able to eat) all day -- I am totally dreading that! We are praying for a good report. She seems great, and we're hoping this scan will just confirm that. Again, we don't expect to be tell much at the tumor site b/c it will be swollen from radiation. This scan is to look at her spine and the rest of her brain.

Her appetite and her energy have both improved in the week we've been home. She wakes up most mornings really hungry. Before, while she was on treatment, she would totally skip breakfast if I let her. Now she wakes up ready to eat. What a nice change. Her energy is increasing daily. She takes a good nap each day and is ready to be asleep most days by 8:30 or so. She's waking up earlier than before and her energy is better while she's awake. The other night, the 3 of us were just hanging out in the great room. She was diving on top of us and rolling over us just laughing and having a ball. Tre' and I got so tickled at her b/c she was just a ball of energy.

So... we're doing great! We are so thankful for the many blessings in our lives and we are thankful for every day we're given. We pray things continue to stay stay so normal and we continue to remember all of our friends who are in the thick of the battle and the families of those who prepare to face the holidays without their child.

Thanks for checking in... Please say a special prayer for Catie's scan on Monday. We'll update as soon as we get the report.

Love to all,
Jenny

Friday, November 11, 2005 8:17 PM CST

****NEW PICTURES ADDED ON SATURDAY NIGHT****

The thought that Catie is finished with treatment is still so unreal that I can hardly believe it. That may seem strange to some folks, but we'd been doing it so long that it really is our "normal." The thought of zero, zip, zilch doctors appointments next week is amazing. The thought that we only have to go to the doctor twice before the New Year (so long as scans are good and we avoid fevers) is just bizarre. But... we'll take it and we'll, without a doubt, be grateful for it.

Some folks have asked about our schedule from here on out. We'll continue to see Dr. Claire once a month for a while. Not sure of how long, but I'm guessing six months or a year. Then the visits will gradually get farther apart until we only have to go once or twice a year. We will scan in 10 days, in January and then in February. Then we'll begin scanning every 3 months (I think) for a while. It would be fine with me to stick with that schedule forever. We will continue audiograms every 3 months for the next 2 years and then they will go to yearly. This is to monitor for any hearing damage from the chemo or radiation. The chemo damage can occur up to 2 years out from treatment. She will receive a GFR (kidney test) and echocardiograms and EKGs yearly. She will also be given neuropsycological testing on a regular basis. This is to monitor radiation effects on her neurological and cognitive function. The first round of neuropsych tests will be in February. We will also go to brain tumor clinic following MRIs beginning in February. This gives us a chance to see all the docs the will be a part of Catie's follow up team at one time rather than scheduling 5 different appointments. I don't know all the docs for sure, but I know she'll be followed by her neurosurgeon (Hudgins), an endocrinologist, a neuropsycologist, therapists (pt, ot, etc)... there may be others, but these are the ones I know of. Of course we'll see Dr. Claire regularly. I love that they are so thorough in their follow-up. They really are a team and it helps to prevent problems when possible and gives quick intervention when problems arise.

So she is finished with treatment (please let her be through for good), but she's definitely not finished with doctors (or should I say, they're not through with her). That's SO ok though!!! We can handle this!!!!! She has been released to her pediatrician for regular kid illnesses which is wonderful. We do still have to be careful with fevers b/c she still has her port. When you have a foreign body in your body, i.e. a port with a long catheter going through a blood vessel to just above your heart, you have to respect fevers. If bacteria were to get in the line it can turn into a blood infection which is not a good thing. So we will continue to treat fevers the same -- a trip to the doctor for cultures and probably iv antibiotics to be safe. However her counts will be good (they're not quite normal yet, but they're looking better every week) so it shouldn't mean a hospital admission (so long as cultures stay clear).

As for our feelings on finishing treatment... I think I've written most of it here already, but... I'm never one to not ramble. It truly is surreal to imagine the possibility of letting go of all that the last 2 years have been. When I think of where she's been and how far she's come, I'm completely overwhelmed. And when I realize that she's done the great majority of it with a smile and a willing spirit (not all, but MOST) I'm even more amazed. My feelings range from sheer delight and excitement for Catie to being pretty dadgum scared that we haven't done enough. We've just lived in the world of childhood cancer long enough to know that too often, it comes back. But... often it doesn't come back, so we will continue to pray (and hope you'll pray with us) that Catie stays clear. And we will continue to be grateful for every SINGLE day and moment we're given.

Hoping you find things to be grateful for today too,
Jenny

P.S. Thank you SOOOOO much for all your great messages in the guest book!! You guys are awesome and you truly have stuck by us through thick and thin. Thanks for sticking around and we hope you'll keep checking in!!!!

Friday, November 11, 2005 8:37 AM CST

Oh how good it feels to sleep in your own bed. We slept soundly (we were all out before 9:30) and are so glad to be home. Tons to do for now, so we'll update later.
Love to all,
Jenny

Thursday, November 10, 2005 9:30 AM

Our girl has done it. She's in the kitchen drinking coffee w/ her GaGa. We'll leave for home in a couple of hours.

A HUGE, HUGE thanks to Lisa and Ashley, the absolutely AWESOME radiation therapists who have "zapped" Catie each weekday for the last 6 weeks. You guys were amazing and you got our morning off to a great start. Our thanks to the great PACU nurses and the anesthesia docs and PAs at Egleston who took such great care of Catie. All of you were wonderful to work with.

We'll update from home.

Love,
The Wilkins Crew

Wednesday, November 9, 2005 8:17 PM

2 years, 1 month, and 15 days

24 rounds of inpatient chemo

Between 3,250 and 3,750 doses of oral medication

Right at 100 days inpatient in the hospital

7 surgeries, 6 of them requiring a neurosurgeon

More than 150 clinic visits (a total guess, but that's the minimum)

Countless doses of IV zofran, our favorite benadryll/phenergan cocktail, jelly bean buckets (emesis basins for you adults out there), and crummy hospital pillows

29 rounds of radiation while under general anesthesia

A minimum of 50 port accesses, and who knows how many bags of fluids

Approximately 100 finger sticks (with no tears for more than 80 percent of them)

Close to 20 MRIs and probably half as many CTs

9 Nuke med exams, 9 audiograms, and 2 EKGs and echocardiograms

Too many friends fighting the same battles, and too many who we've lost...

Numerous amazing doctors who have made it possible for Catie to be here today... In particular, Dr. Claire, Dr. Hudgins, Dr. Bunch, and Dr. Cossio, Dr. Marcus, and all the great anesthesia docs we've worked with along the way. There are no words big enough to say thank you.

Nurses whose kindnesses have literally carried us through -- I cannot even begin to name all that have touched our hearts so deeply, but to name a few... Danielle (we miss you and hope you and the baby and Jack and hubby are all doing well -- thanks for always being so on top of things and easing my worries when I've called), Kimi (I never would have made it through those early blood clot and brain bleed days without you), Amy (thanks for being willing to have pukey scrubs the rest of the night so that I could get in the shower), Jennifer, Amanda (God knew what He was doing when He made you our first nurse), Mandy (we Love you and miss you-- have some great pictures to send of you giving Catie her last chemo, but I need an address), Annie, Joy, Mindy, Judy (both of you), Jodi (thanks for the late night chats), Allison, Holly... I am SO leaving names out, but please know that you guys eased our journey so very, very much... our lives are better for having known you.

Our awesome techs, in particular Elizabeth and Ms. Judy and Cheryl, Ms. Barbara and Ms. Edith and all the ladies at both clinic

Our wonderful caringbridge family, thank you for being there every step of the way... our families who have eased our journey greatly ... our friends who have stood by no matter what ... for the mail the packages, the calls, the e-mails....

And it all comes down to tomorrow... One more planned radiation treatment under anesthesia.

Please pray that every last cell is destroyed and that she never needs more treatment.

"Off-treatment" wow.

We'll update tomorrow night... from home... that brings a BIG smile to my face...

Love to all,
Jenny

P.S. If you've tried to call my cell phone in the last few days, sorry. My charger died, and thus my cell is dead too. All my numbers are saved in it, so even though I can check my messages from another phone, I can't get the phone numbers I need to return calls. We'll get it straightened out when we get home.

Monday, November 7, 2005 10:40 AM CST

Todayour thoughts and prayers are with the Newsome family (/ga/victorianewsome) who said goodbye to their beautiful daughter Victoria yesterday. She fought a long hard battle against medulloblastoma and her body is now whole again and free of cancer. Fly free sweet girl... you've earned it.

We are doing well and looking forward to Thursday.
Love to all,
Jenny

Thursday, November 3, 2005 9:11 AM CST

Hi guys! Just a quick update to let you know how things are going. We are doing well, Catie is getting over what I think was a stomach bug. She woke up very pukey yesterday. No treatment yesterday, so our finish date has been moved to next Thursday. She seems much better today, I just have to get her drinking better.

Other than that we're good, just gearing up for William's Walk on Saturday. It's not too late to join Catie's Cruisers if your interested. Just go to the link for the Brain Tumor Foundation for Children above and click on the info. for William's Walk.

Please continue to pray for Victoria (/ga/victorianewsome) and John Michael (ga/johnmichael).

Love to all,
JEnny

Tuesday, November 1, 2005 9:00 AM CST

Hi guys!

We are doing well. Catie has completed 24 treatments and has 6 left. We saw Dr. Claire yesterday and things went well. She was at the COG conference last week and brought some good news home for us. A study on infantile medulloblastoma (diagnosis age 0-3) and pathology was presented. Catie's pathology was (in as few words as possible) desmoplastic w/ extreme nodularity. The study showed that the group w/ desmoplastic pathology did better than the other pathologies. They broke things down further and within the desmoplastic group they looked at kids whose tumors fell into the extreme nodularity category. These kids did even better than just the desmoplastic group. So... as far as pathology goes, if you have to have this nasty tumor, Catie picked the right kind to have. It's not a one-way ticket to a cure by any stretch, but this is very encouraging news and we'll take all the encouraging news that we can get. It also affects our decisions about our next step. Given this info and all the other factors in Catie's case... Dr. Claire's is leaning towards this being the end of treatment (so long as it all stays away) for Catie. The decision isn't final, but it's looking like next Wednesday will be Catie's last planned day of treatment.

**********BIG PAUSE***********

It's hard to imagine being off treatment b/c honestly, I hardly remember life before treatment. It's kind of like having kids. You know in your mind they haven't been here all along, but you can't remember what it was like before. The thought of life without restrictions (for the most part), doing normal things like going to church each Sunday, having playdates even if a friend has yellow boogers or was around someone w/ a stomach bug the day before, going to the doctor once a month instead of once a week (or daily or even twice a day like we've been doing the last 5 weeks) ... it's just surreal and wonderful and scary. It seems almost too good to be true and I'm almost afraid to embrace it and dive in. I almost want to test the waters w/ my big toe, and then dangle my feet in before getting in inch by inch. Then there is the other part of me that wants to just jump in head first and soak it all up.

Catie wakes up each day asking, "We go to doctor now? I go get my treatment?" I'm so excited to tell her, "No baby, we don't have to go today.

So much more to write, but she's ready to go watch TV for a bit. Please continue to pray that these last 6 treatments destroy every remaining cancer cell.

Also, our friend, Victoria and her family (/ga/victorianewsome or click Victoria on our links page), met with hospice yesterday. Please pray for them and stop by their site. I can't imagine how these days must be for them.

Love to all,
Jenny

Also, it's not too late to sign up for William's Walk. We'd love to have you walk (or phantom walk) for Catie's Cruisers. Click the Brain Tumor Foundation for Children sight above or e-mail me for more info (my e-mail is at the bottom of this page). If you'd like to make a donation to the walk go to www.justgiving.com/pfp/catiescruisers .

Friday, October 28, 2005 9:17 AM CDT

A big thanks to thanks to Amanda J. for resizing the pictures for us! Now they're easier to see. Catie is doing well, she is resting right now as she's pretty tired. We're thinking of catching a movie this afternoon. She's never been to the movies, and I think she'll like it.

We have a scan coming up immediately following radiation (either 11/11 or 11/14). I have to admit I'm a little worried about it... not b/c of anything I see wrong with Catie but b/c the only part of her brain that has been treated for the last 2 months is her tumor bed. The rest of her brain and spine have had no treatment. This is where we should be now, but it still makes me a little anxious. Please continue to pray that every cell is gone. We've got lots of friends off treatment, so I know I'm not losing my mind by worrying about coming off treatment (you have to admit it sounds crazy to ask the doctor, "well can't we please just give her more chemo, just a little?"). It can definitely be a time of mixed emotions, thrilled and excited and a little scared too.

Thanks for checking in. I'm off to check the movie schedule.
Love to all,
JEnny
P.S. Please continue to pray for Victoria, John Michael, and Jay (links at friends website above). Also add Marin (www.marinlove.com) to your list. She is a teenager who is battling a brain tumor. She was a nationally ranked swimmer and is battling back from paralysis on her right side from surgery. What a fighter.

Thursday, October 27, 2005 9:17 AM CDT

Also, it's not too late to sign up for William's Walk. We'd love to have you walk (or phantom walk) for Catie's Cruisers. Click the Brain Tumor Foundation for Children sight above or e-mail me for more info (my e-mail is at the bottom of this page). If you'd like to make a donation to the walk go to www.justgiving.com/pfp/catiescruisers .

Hi guys we're doing well -- only 9 treatments to go. Check out the new pictures (if you can fit them on your screen). I don't have my usual computer that I know how to use to shrink pictures and stuff. Sorry for the huge size, we'll see if we can get it fixed.

Hugs to all,
Jenny

Monday, October 24, 2005 10:42 AM CDT

Update Monday PM
Things went well with Dr. Claire today. She was thrilled with how great Catie looks. We talked a little about dropping some meds... Iron (she's been taking that since 4/04) may be gone as early as next week (her hemoglobin has been 12.6 the last 3 weeks -- holy cow -- NORMAL!!) and we can probably drop diflucan a couple of weeks after finishing radiation (that one's been around since 9/03). The Bactrim will stick around another 3-6 months, but that's just a weekend med --- holy cow!!! We may be adding Accutane (at a dose much higher than the dose used to fight acne) or Celebrex to encourage any remaining cancer cells (pray that there are NONE) to mature or we may finish with radiation and be done... (meaning watch carefully, pray hard, and try not to lose your mind b/c you know you're not actively fighting the beast anymore). The thought of normalcy creeping back in is thrilling and scary, but we can't wait!
***************************************
Mon. AM
I've been lucky on this journey in that I haven't felt the need to ask "Why?" too often. There have been times I've wondered "why Catie?" or "why our family?" and the thought that quickly comes to mind is "why not?" There are so many other families and kids on this road, there's no reason it shouldn't be us. I think the other factor that has helped me not to ask why too often is the fact that Catie has done remarkably well with her treatment. Other than the first month, her journey has been so very easy compared to many cancer patients. I know that had are journey been marred with serious infections or months in the hospital or worse, it would be much harder to accept what we had been dealt. Don't get me wrong, it's not easy for us to use words like cancer or brain tumor or medulloblastoma in the same sentence with Catie's name. But... we've been here long enough to be thankful we're still in the fight and we know it could have been much tougher than it's been so far.

All that said, I think that the time that it's hardest for me to accept everything is when I read Psalm 139. So much of that passage is so very comforting, but there is one part that is hard when I read it.
vs. 13For you created my inmost being;
you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

I believe that when God created Catie, He could have removed those few cells that have wreaked havoc for our family... He could have stopped all of this. But... He didn't and I have no idea why. I do not think He caused her cancer, but I do think that He allowed it. Most days, I'm ok with that (especially b/c she has done so well and has not had to suffer a great deal), but there are days when I wonder why He just didn't take those cells. But... I know she is fearfully and wonderfully made. I know He has the BIG picture and all I have is a little tiny puzzle piece. I don't know how it fits in, but He knows exactly where it goes. I know that one day I will see clearly and not with the limited sight that I have here on Earth.

I guess the reason those few verses are hard in some ways is b/c it makes me think about what if... what if those cells had never been there... what if He had taken them away... what if Catie had lived to be at least school age before she knew words like chemo and treatment and cancer and tumor and radiation... If those cells hadn't been there, our journey would have been completely different and there are times when I long for that so very much... But... if things had been different, would I appreciate her life the way I do now? Would I know how valuable health and normal days are? Would I soak in her giggle and make mental notes of the she squints when she smiles like I do now?

Yesterday we went to the worship service at the hospital and the chaplain doing the service shared a song that brought all of this to the surface. The song is "You're My Delight" by Jeremy Fern and it's just wonderful. I hope it's recorded somewhere so I can buy the CD. I thought I would share the words with you, but if you'd like to hear it go to this link and click on the song, "You're My Delight." I'm not all savvy with my web page skills (like some folks I know =) ) so I can't add it to the page.

You're My Delight
I used to sit on my back porch and think what if I wasn't
me
Would I wear these clothes? Would I still have this nose? Would I be 6'1" or 5'3"?

But I know God made me the way that He planned, So I ought to love me the way that I am.
I am beautiful in His sight, I'm His love and I am His delight.

I said to God once, "What's wrong with me? I can't run like the other kids who play on my team?"
"I seem to be less, I can't even run fast. Am I who I'm supposed to be?"

But God said, "I made you the way I planned, and I really love you and that's who I am."
"You are beautiful in my sight. I am love and you are my delight."

Next time you think you're not top of the line and life doesn't treat you fair.
Remember that God thinks you're doin' just fine. You're His love and His delight.

Know that God made you, He's your biggest fan.
He really loves you.
Oh, He really loves you.
Yse, He really loves you.
You're part of His plan.
*****
So, even though I started out here saying I don't ask why too often, I guess I'm in a "why?" mood today. Why do bad things happen? Why are some kids trapped in bodies they can't use? Why is John Michael having to fight so hard again, when he's already battled through so much. Why has Maddie's battle with brain cancer been so, so much harder than Catie's (she's been in the hospital all but 8 or so weeks since February)? Why did Hayley and Maddy and Carter and Blake and all of the others have to fight so hard only to lose the earthly battle with cancer and leave their parents missing them so? I don't have the answers, and I know that I won't this side of Heaven, but I do know that God is with us each step of the way, even when we don't understand. I know that He knows the big picture and I trust Him to take care of us. And I know that He created Catie and in spite of all that she's been through He is using her in His plan.

While the passage I shared earlier is hard sometimes, it does bring great comfort. I imagine God creating Catie... molding her and carving out her little nose and the ball on her chin... I imagine Him looking down on her and seeing that it was good. And then I picture Him placing his heavy, loving hand on the back of her head, right about where her big scar is, and blessing her... giving her what He knew she would need to walk the road ahead of her. It probably didn't happen exactly as I picture it... but I do know He gave her what she needed... I have witnessed her strength and her spirit far too many times to ever doubt that...

Enough rambling. Thanks for checking in and sticking with me all the way to the end.
Love to all,
Jenny

Thursday, October 20, 2005 7:48 PM CDT

We are doing well tonight, but my heart is heavy for our friend John Michael and his family. Please drop to your knees and pray for him as he is battling Graft vs. Host disease in a serious way. Pray for his family and his team of doctors in both Savannah and Atlanta. Please go by his website (/ga/johnmichael -- or click link on friends' page) and let them know of your prayers and encouragement and let them know that Catie sent you.

Love to all, we'll update soon.
Jenny

P.S. Our buddy, Chandler, has scans tomorrow, they could use prayers for clear, clear, clear... (/ga/chandlerbooth)

Tuesday, October 18, 2005 2:49 PM CDT

Hi guys! Just a quick update as Catie catches her 2nd nap of the day. We're doing well and glad that tomorrow we will be 1/2way through. Catie continues to handle treatment well. Her check-in at the clinic on Monday showed she had lost a pound in the last week. That could just be fluid as she didn't drink well over the weekend. We're pushing her to eat more (and drink more) just in case. Losing a pound is ok, but we don't want to start a trend where she's losing a pound each week.

She does great each morning and isn't afraid at all. She lays down when she's ready to start, I sing (the radiation techs tell me they sing the "Three Little Kittens" song all day long), and she falls asleep. PT is going well. She has it twice a week and comes home worn out. They are working hard on building her leg strength. They want her to be able to jump off of the ground, go up and down stairs w/ one railing w/ supervision, and a couple of other things. Her hips are much less stable right now (from either the anesthesia, the radiation, or both). Her cerebellum is receiving radiation, so seeing changes in some skills she's mastered is not unexpected. However, the cerebellum repairs itself well, much better than the rest of the brain, so she should recover well. I'm glad we were able to set up PT here so that we can hopefully keep her from losing too much ground and maybe even make some more progress. Stephanie, we're trying to keep her in good shape for you. =)

We had a great time at w/ Nicole, Benji, and Bailee this weekend. We took the girls to Stone Mountain and to the Yellow River Game Ranch. They enjoyed both, but the game ranch was a huge hit! We'll try to get pictures up soon. It was great to see them and have a taste of home.

Right now we're waiting on the horses to get here for a visit and then we're headed over to Camp Sunshine House for family night (good thing she got 2 naps today). We're looking forward to visits from all sorts of people this week, and that's making our week go quick.

We're off to pet the horses!
Talk to you soon,
Jenny

Tuesday, October 18, 2005 2:49 PM CDT

Hi guys! Just a quick update as Catie catches her 2nd nap of the day. We're doing well and glad that tomorrow we will be 1/2way through. Catie continues to handle treatment well. Her check-in at the clinic on Monday showed she had lost a pound in the last week. That could just be fluid as she didn't drink well over the weekend. We're pushing her to eat more (and drink more) just in case. Losing a pound is ok, but we don't want to start a trend where she's losing a pound each week.

She does great each morning and isn't afraid at all. She lays down when she's ready to start, I sing (the radiation techs tell me they sing the "Three Little Kittens" song all day long), and she falls asleep. Works for me, quick and easy. PT is going well. She has it twice a week and comes home worn out. They are working hard on building her leg strength. They want her to be able to jump off of the ground, go up and down stairs w/ one railing w/ supervision, and a couple of other things. Her hips are much less stable right now (from either the anesthesia, the radiation, or both). Her cerebellum is receiving radiation, so seeing changes in some skills she's mastered is not unexpected. However, the cerebellum repairs itself well, much better than the rest of the brain, so she should recover well. I'm glad we were able to set up PT here so that we can hopefully keep her from losing too much ground and maybe even make some more progress. Stephanie, we're trying to keep her in good shape for you. =)

We had a great time at w/ Nicole, Benji, and Bailee this weekend. We took the girls to Stone Mountain and to the Yellow River Game Ranch. They enjoyed both, but the game ranch was a huge hit! We'll try to get pictures up soon. It was great to see them and have a taste of home.

Right now we're waiting on the horses to get here for a visit and then we're headed over to Camp Sunshine House for family night (good thing she got 2 naps today). We're looking forward to visits from all sorts of people this week, and that's making our week go quick.

We're off to pet the horses!
Talk to you soon,
Jenny

Friday, October 14, 2005 3:40 PM CDT

Hi guys,
We're doing well and Catie has completed 12 treatments. She definitely gets tired more easily, but other than that she seems to be tolerating treatment well. She hasn't even had any Zofran in 2 days, and she continues to eat fairly well. There are times during the day that you can definitely see the effects of the treatment or the radiation (or probably the 2 combined) b/c she does get tired. She will play along and seem great and then she just loses it over the tiniest things. When that happens we usually just head upstairs to our room for a nap. Her schedule is completely out of whack on the days she needs a 2nd nap b/c then she is still wide awake at bedtime. This is all VERY minor and we're just grateful she seems to be doing so well.

We were able to have a physical therapy (PT) session this week her at Scottish Rite as well. She's still getting around well, though I have definitely noticed that her hips are much weaker since we've started radiation. I don't know if it's b/c of the area of the brain they are radiating or if it's fatigue, but there is definitely a difference. She loved PT and worked hard for Mary. We'll continue w/ PT here twice a week as she is able to tolerate it. It helps her and it adds more routine to our day which I think is helpful too.

Catie was QUITE happy to see her daddy last night. They played hard after dinner last night and the 2 of them did radiation on their own this morning, so I got to sleep in.

Please continue to check on our >friends. >Victoria and her family could really use the extra prayers right now.

Thanks so much for checking in on us. We're looking forward to a great visit with our friends Benji, Nicole, and Bailee this weekend. I think we'll be making a trip over to Stone Mountain tomorrow. That should be fun!!

Hugs to all, we'll update soon,
Jenny

Here are some reminders about some upcoming fundraisers for those who are interested. Remember to sign up for William's Walk if you are interested. We've got a great start for our team, Catie's Cruisers, and we'd love for you to join us. If you aren't interested in participating or being a phantom walker, donations can be made here. And finally check out The CureSearch Hayley Thomson Challenge, a golf tournament in memory of Catie's friend Hayley who fought a brave fight against AML.

Tuesday, October 11, 2005 8:00 PM

A COUPLE OF NEW PICTURES ADDED ON WEDNESDAY (THOUGHT I SHOULD GET THE RADIATION ONE DOWN)-- THANKS TO KRISTIE, KENDRIE'S MOM FOR THE PICS

Just a quick update before I put Catie down for the night. She is wiped out.

We are so thankful to all the folks who have been so great checking in on us. All of our Atlanta cancer buddies have been super. So many have called to see if we needed anything, several have stopped by, D.D. (Mary Grace's mom) and I escaped to spa night at Camp Sunshine last night (ahhhhhh.... so relaxing), and Kristie (Kendrie's mom) brought lunch by today while they were in town. Last week I got to visit with Nancy (Will's mom --woo hoo for great scans) Olson and her AMAZING prayer group -- what a special time with some really amazing ladies --the night really filled up my cup and I'm so grateful for the chance to meet you all. The letters and cards are wonderful and Catie loves to check the mail... I know I'll never be able to write back to everyone, but I hope you know how much we appreciate everything. Special thanks to my Ebenezer family -- you guys are amazing and we can't wait to get back home. Special thanks to Melinda from FL and Barbara from CA for always making Catie feel so special! You ladies are great! Our families have been great -- we could not do this without them. A huge thanks to our neighbors who check our mail and feed the animals when we're all gone. So many people are doing all they can to make being gone easier and we truly appreciate it.

Tre' is coming back up on Thursday and I know Catie and I both will be so glad to see him. He says it's awfully quiet at home right now. Look out Tre', Uno is still all the rage here at night!!

The families at the RMcD House right now are really great. I'll have to fill you in on some of the stories here soon, but for now, it's time to put my favorite little person to bed. We going to read her new favorite book (Happy Halloween Biscuit -- thanks Lisa).

Love to you all, and thanks for checking in!
Jenny

P.S. I'm not able to check in on all of our friends as regularly right now, but we do it when we can. Please know that even if we're not signing your guestbook or e-mailing you we're still thinking of you and praying for you. To those of you going to Lighthouse this weekend... have a blast and dip your toes in the ocean for us!! Love you all!

Sunday, October 9, 2005 9:37 AM CDT

William's Walk info is below if you need it...

The end of Catie's planned treatment is approaching... it's one month from today. One part of me is thrilled and can't wait to return to a sense of normalcy. The other part of me is terrified... We've been fighting this thing for over 2 years now. It was still there in July. What if we haven't done enough? What if it comes back? What if there is one little cell hanging out outside of the radiation field? What if we don't get to have "normal?" I know that "normal" won't ever be the same, but I want a taste of our new normal... actually I want much more than a taste, I want a lifetime of it for Catie, with Catie.

I believe in the power of prayer, so that's the only way I know to battle the fear that creeps in. However, I also know far too many families who have prayed with all their might, but their prayers have not been answered in the ways that they so longed for. I cannot begin to imagine that road, and again, I pray that I never have to. I have no power against this disease, against those stupid cells that can't keep themselves from multiplying... all I have is prayer and a belief that God will continue hold Catie and Tre' and I in the palm of His hand... a belief that, though it's hard to imagine, He loves Catie even more than I do... so... in the face of the fear that tries to creep in this gray Sunday morning, I will pray for all the things that I dream of for Catie and for our family...

*for health for Catie, for a long cancer free life in which she is happy and carefree and learns to love the God that loves her so

*for skinned knees, and strep throat, maybe a broken arm, or yes (Nik, don't laugh) even a stomach bug or 2 b/c those are all so very, very normal and a part of growing up

*for the chance to sing in the preschool choir, the children's and youth choirs b/c she loves music so much -- I wish you could hear her sing like we get to each day

*for friendships strong and true, built on good foundations... for the enjoyment and love of other people, and for the ability to enjoy being alone as well

*for Catie to find her strengths... they probably won't be physical strenghts b/c of her balance, but to be honest I don't care what they are as long as she lives to have the chance to find them and as long as she enjoys developing them

*for a giving and loving heart that sees the needs of other people and wants to take action to help

*for her to have the chance to tell "her story"

*for her first day of kindergarten, for fun times at recess and a love of reading, for times sitting at the kitchen table doing homework and eating an after school snack, for sleepovers with lots of loud, giggly little girls, for her baptism and spiritual growth, for Vacation
Bible School and youth camps, for her first car and for her graduation

*for her wedding day, may he love her with all his might and she him... for her children, whether they be her own biologically or adopted...

So many things I pray for her, and really they're not that different that what I would have prayed for had she not been sick. We all wish so many things for our kids... now my prayer is that she beats this disease to get to all of those things I wish for her.

We always get Catie a special book for Christmas. The first Christmas after she was diagnosed, I was at the book store and stumbled upon a book that I knew was "the book" for that year just by reading the title. As I stood on the aisle in the store reading "Wishes for You" (sorry, I don't know how to underline on this thing) the tears begin to fall fast... partly b/c it shared so many of the things that I wish for Catie and partly b/c I was so scared she would not live to see and feel and do many of the things in the book. Here we are 2 years later and I guarantee if I read the book right now, the tears would come quick for the very same reasons... So I will pray... I will pray that the cancer is gone for good and that bad cells will never again grow in her body... I will pray that her life will be long, healthy, happy, and full of love and laughter... I will pray that she will love God and accept Him as her Savior... I will pray that God will give Tre' and I the opportunity and the wisdom to raise the little girl that He gave us... and we will pray for all of the other folks we've met along the way.

Thanks for praying with us and for checking in.

Love to all,
Jenny

We'll be participating in William's Walk again this year. It's a 2K walk and 5K / 10K walk benefitting
The Brain Tumor Foundation for Children and will be held on Saturday, November 5. Our team is Catie's Cruisers and we hope some of you will consider joining our team. It's $15 if you plan to attend the event and $18 if you'd like to participate as a phantom runner. All who register (whether an actual participant or a phantom runner) will receive a t-shirt. You can register on-line or by phone or mail. Just click here and scroll down the page to find the link to register. Be sure to list Catie's Cruisers as the team you're joining. We had 35 participants last year and we'd love to have even more this year. E-mail or post to the guest book if you join our team so we can kind of keep track. Thanks to those who have already let us know they've joined.

Saturday, October 8, 2005 10:08 AM CDT

A reminder for anyone interested in William's Walk to raise money for the Brain Tumor Foundation for Children...

We'll be participating in William's Walk again this year. It's a 2K walk and 5K / 10K walk benefitting
The Brain Tumor Foundation for Children and will be held on Saturday, November 5. Our team is Catie's Cruisers and we hope some of you will consider joining our team. It's $15 if you plan to attend the event and $18 if you'd like to participate as a phantom runner. All who register (whether an actual participant or a phantom runner) will receive a t-shirt. You can register on-line or by phone or mail. Just click here and scroll down the page to find the link to register. Be sure to list Catie's Cruisers as the team you're joining. We had 35 participants last year and we'd love to have even more this year. E-mail or post to the guest book if you join our team so we can kind of keep track. Thanks to those who have already let us know they've joined.

I was going to do a real update, but Catie wants to play on the computer. So... we'll update later.
Jenny

Thursday, October 6, 2005 9:47 AM CDT

We are doing well and hanging tough. Catie continues to handle things like a champ. She is now used to the morning routine and no longer cries when she sees the anesthesia mask coming at her. Thankfully, she is asleep before they put the white mask on her! We are generally in and out at Emory in just under a half hour. We come home, eat breakfast, and Catie is usually ready for a good 2 hour nap by 11:00. So we're beginning to get a routine down and that is good. The staff at Emory and the anesthesia team that comes over from Egleston are wonderful!! They are cheerful at an early hour and they take great care of Catie. We are so grateful for the superb care Catie continues to receive. 6 days down and 24 to go...

Last night was our 100th night in the Ronald McDonald House. Wow!! I know that I've bragged on them a lot lately, but I honestly don't know what we would have done without them. If we had paid for an average hotel room every night, we would have spent at least $8,000 by now. They provide dinner each night and we usually eat breakfast and lunch here as well. Who knows how much money that has saved us -- I figure at least $4,000. The money side of things doesn't even begin to touch on the support you find from the staff (they're really more like family now) and the other families here. So in honor of our 100th night, I thought I'd share a few things that the Scottish Rite house is in need of right now. Here goes: Laundry detergent, dishwasher detergent, mattress pads (queen), trash bags (30 gallon size), plastic/paper plates and cups, and individually wrapped snacks (i.e. Little Debbies, fruit snacks, Capri Suns or juice boxes, etc. for kids to snack on during the day -- they go quick around here). In addition, the Atlanta houses are preparing for much needed expansions at both houses. Monetary donations are always helpful. There are hundreds of families who use these houses each year. So.. there's my pitch for the house. We are so grateful for the house!!

We'll keep you posted on how things are going. We hope that your crew is doing well and we appreciate you checking in.

Thanks,
Jenny
p.s. I got to hold 2 of the new babies last night. Catie thought it was a riot when on of them got me good when I was changing a diaper -- I'm not used to boys!! They are so sweet and so tiny!! Their mom and dad sure could use some sleep though!! =)

Tuesday, October 4, 2005 4:14 PM CDT

Hi guys!

Nothing much new to report, and we'll take that as a good thing. 4 treatments down and 26 to go. Yesterday we were in and out in just under an hour. Catie continues to feel pretty well, though she does seem to tire a little more easily. That's easily remedied with a good long nap, and then she's good to go. We're having to remind her to drink quite often, but so far she hasn't gotten too far behind.

Catie was quite thrilled yesterday with the arrival of TRIPLETS in the house. They'll be here for about a week before heading home to the Caymen (sp?) Islands. She loves it when she gets invited upstairs to peek at the tiny babies. They are beautiful!

We'll update more soon. Thanks for checking in, and please do continue to pray that every cancer cell left in her body will be in the radiation field and will be destroyed. Pray for her protection as well.

Love,
Tre', Jenny, and Catie

Sunday, October 2, 2005 8:59 AM CDT

We've decided that the excessive napping on Thursday was due to the flu shot (or the flu shot in combination w/ general anesthesia and radiation). Friday she napped normally and yesterday she had just a short nap. We had 2 events scheduled for yesterday, but we decided to be cautious and only go to one just so we didn't over do it. So, we had to miss out on the Lighthouse fundraiser. We sure hope things went great for them at the races.

Yesterday afternoon, we headed up to meet friends from college and their daughter (Jessie, Christy, and SaraBeth). They had planned a fun outing for Catie and SaraBeth with the Fairy Godmother at Barnsly Gardens. The Fairy Godmother does all sorts of fun things for all different folks, from helping guys plan proposals to creating a perfect afternoon for 2 little girls. Catie and SaraBeth had a super afternoon. They dressed up as and pretended to be butterflies and then delivered balloons to people. They got to go pet the horses and play with Play - Doh and who know what else. They came back with the butterfly outfits, cowboy hats, feather boas, a stuffed horse... and big smiles. Thanks Jessie, Christy, and SaraBeth for a great afternoon.

When the girls got back to us, we spent time down by the lake rolling in the grass, just enjoying the gorgeous day. It was a great afternoon to just be a normal kid and we brought her home with dirt stains on her blue jeans... just like it should be! But before heading back, we met Aunt NikNik and Uncle D for dinner at a Japanese Steakhouse, a first for Catie. She loved the fire on the table and enjoyed watching the chef. She ate tons and tons and you know that made us smile.

Today we're lying low, so we don't push it. I think that Uncle John and Aunt Casey (I hope I spelled Casey right, she's John's fiance) are coming up to hang out. We're about to chow down on the huge brunch someone just deliverd to us here. Thanks for checking in with us. Tomorrow, it's back to reality with radiation at 7:30 or 8:00. I'm not sure if we see Dr. Claire tomorrow or later in the week, but we'll keep you updated on how things are going.

Oh, one last thing about yesterday... It was almost time for us to leave Barnsley Gardens yesterday when a couple came up to Tre' and Catie and said, "This wouldn't happen to be Catie, would it?" They recognized her from this page and are friends with some other warriors we know. I'm so glad they said hi and that we got to visit with them for a second. To to them and all of you other folks out there who check on and pray for us, a big, big thank you. We continue to feel all the prayers.

Love to all,
Jenny

P.S. Thanks to all you Ebenezer folks who sent cards last week. We got several yesterday, and I have to admit, that I got a little teary as I read them. It was so good to hear from home. Thanks L and T (and anybody else who helped) for getting the labels and cards and stuff together. We love you guys!

Thanks to all our neighbors too who are helping gather mail and feeding the animals and just keeping an eye on things. It's so nice to know that things are taken care of and we don't have to worry about it. Love you guys too.

Friday, September 30, 2005 12:50 AM CDT

Well, 2 rounds down and 28 to go. Catie's doing pretty well. Yesterday she was very tired following the treatment. She slept on the way home and then took a 2 hour nap when we got there. She took a 2nd 2 hour nap later in the day. She didn't go down for bed until about 10:30 last night, but she really needed that extra sleep time during the day. Today she has been tired on and off but didn't give in for a nap until normal time for her. The zofran seems to be doing the trick and she hasn't complained about her stomach anymore. Her appetite has been a little off, but it's not horrible and she is drinking well.

She did have some nausea yesterday. Thankfully, she was able to tell me her tummy felt yucky and that she felt like she needed to go "bleh." She never got sick but she did gag when I gave her the medicine for her tummy. I'm glad she was able to tell me she felt bad -- that makes things much easier. She's been very clingy to me most of the time (ever since Tuesday, not just today). I think she just knows things are different right now and wants me close.

The Ronald McDonald House continues to be great to us (we're nearing our 100th night staying here -- not consecutive nights though), but that's no surprise. We're so thankful for this truly wonderful organization. If there is a RMcD House near you, I encourage you to check into volunteering or bringing a meal. They also collect pop tabs from canned drinks. All those pop tabs add up to a lot of cash and trust me, once you get used to popping the tabs off, it's hard to stop. Catie even tries to pull them off if she sees a can with one still on it.

Well, I guess that's it for now. We'll update more soon. Thanks for checking in.

Love to all,
Jenny

Wednesday, September 28, 2005 11:07 AM CDT

Sorry it's taken us so long to post about yesterday! After birthday stuff and an early start yesterday morning we were all headed for bed earlier than usual last night.

Catie's birthday was wonderful! We were low-key here most of the day and then went out to eat at Chili's with family and friends for dinner. We picked Chili's b/c they donated all of their profits that day to St. Jude. So we ate well and colored lots of peppers. Catie had a blast! I don't know that we'll ever celebrate her birthday without my mind going back to her first birthday when we handed her over to Dr. Hudgins for the first time. But it makes the day that much sweeter b/c she's here to celebrate and we see how far she's come. We closed out the birthday festivities (I swear we've been celebrating for a week) with yummy cake at the Ronald McD House last night. A big thanks to those who put that together for Catie. (Kelly, she was impressed this morning b/c her balloons were still floating and hadn't fallen to the floor!)

Yesterday's appointment at Eggleston/Emory went well. It was an early start, but it was all just fine. Catie went to sleep and woke up easily. She did a good job "smelling the flowers" (that's what our buddy Mary Grace called breathing in the anesthesia gas b/c the put yummy smelling chapstick on the inside of the mask) and fell asleep within 20 seconds. She woke up a little grumpy and was a little off all day. She would go from being hyper and great to very fussy/whiney wanting Momma. I'm hoping that was an effect of the Versaid (sp?) and not the gas. We're not going to use Versaid in the morning and go straight down for a nap when we get home and see if that makes a difference. Being off of her schedule probably didn't help her mood either, but thankfully, we now report at 7:30 instead of 6:00. That should be helpful too. We also will report to Emory and not Egleston. That should speed up the process as well. (We did get to go to Egleston yesterday though, and we got to meet the famous Mr. Mike, driver of the "train." We gave him hellos from all our buddies and he said to tell everyone "hi.")

Today we see Dr. Claire at 2:00. I assume we'll have labwork (since this is the longest Catie's ever been without it). Then we get started with radiation in the morning. Please pray: 1. that ANY and ALL remaining cancer cells in Catie's body will be in the radiation field and will be completely obliterated -- we have to get every cell... or you know what happens; 2. for the protection of her body, that she will be able to avoid secondary tumors and malignancies, and if she doesn't that they will be ones that are easy to treat; 3. that she will not feel to badly and that she won't miss home too much; 4. for all of our friends (especially Victoria and Jay and Ryan -- links on our friends page).

Thank you so much for staying with us on this long journey. Your prayers do so much and truly make a difference.

"For I know the plans I have for you," says the Lord, "Plans to prosper and not to harm you, plans for a hope and a future." Jer. 29:11

Love to all,
Jenny

P.S. Thanks for all the great cards that folks sent for Catie's birthday, especially Audrey's Umbrella!

Monday, September 26, 2005 9:16 PM CDT

Hi guys! Just a quick message to say things are going well. We're settled in and unpacked. Catie had a great birthday today. We just kind of hung out here most of the day and went out to dinner at Chili's (we colored lots of peppers) tonight.

Lots to write tonight, but I'm keeping it short as I've GOT to get to bed. We hit the road at 5:30 in the morning to head for Eggleston. Catie will be put under general anesthesia and the will do the simulation. I'm not sure what all this involves, but I'm sure we'll find out tomorrow. We'll update again tomorrow night.

Love to all,
Jenny

Saturday, September 24, 2005 6:45 PM CDT

I'VE ADDED THE NUMBER FOR THE DIRECT LINE TO OUR ROOM AT THE BOTTOM.

We have arrived in Atlanta. Believe it or not, we fit everything in the car and there was even room left over for the passengers. Catie enjoyed her GaGa and Nana today while Tre' and I attended the first of 2 days at the "Tools for Living" pediatric brain tumor symposium. We gained some good information and learned a lot about things that are on the horizon for cancer and brain tumor treatments. There are some really promising ideas on future treatments, but in some ways it's so frustrating to see the hope for down the road and know that so many are suffering now and need those treatments now. I learned a great deal about clinical trials and how that process works. I knew it took a long time to get a drug approved, but it was interesting (and again, frustrating) to learn about the process. We pray that money continues to flow into organizations that fund research for these diseases. The research is why more kids are surviving today and it will lead to better results and less toxic treatments in the future.

The session on the late effects of treatment was very good. I knew most of the effects, and I know that we probably won't face every one discussed, but it was still very sobering to consider what lies ahead if/when we beat this cancer. It will be worth it, because facing those issues will mean that Catie is here, but you hate to see problems that may arise for your child and know there is nothing you can do to stop it.

Today it is 2 years since we found the mass in Catie's brain. The anniversary this year has not been as hard as last year, but it has definitely been on my mind throughout the week. I am so very thankful she has made it this far and not only survived, but thrived. Honestly, if she had hair on her head I don't think anyone would even know. Her energy level and stamina amaze me. She's not up to par with her physical skills yet, but she's doing tremendously and continues to make great strides. It's definitely safe to say that I'm a proud mama!

Well, I'd better head back upstairs. Our stuff starts Tuesday. We'll keep you posted on how things are going!
Thanks for checking in,
Jenny

Friday, September 23, 2005 1:45 PM

Several folks have asked for our address, so I've added it below under Hospital Information. It's listed immediately after the names of the hospitals Catie uses. Just make sure to put Catie's name under Ronald McDonald House so that cards get to the right person. Thanks!

I've managed to get everything packed... I think. Now I just hope we can get it all in the car. Ugghh!! Keep your fingers crossed on that one.


Thursday, September 22, 2005 9:38 PM CDT
Just a short entry tonight. There is a lot to write, but I'm TOO tired tonight. We had a birthday party for Ms. Priss tonight. The big day isn't until Monday, but we wanted to celebrate with folks here before we left for Atlanta.

Catie had a blast and I think she enjoyed the anticipation of the party as much as the actual event. Oh what fun we've had today.

Birthdays will never be just birthdays with Catie. It's a reason to celebrate for two reasons, the celebration of the obvious, another year... and the celebration fo the day that nasty tumor was removed from her brain. So many emotions come with the anniversary of finding the mass and of finding it was cancer. But, as hard as reliving the thoughts of those first early days is, we are so very grateful as it was the beginning of healing her. The journey has been long in many ways, and it's not over yet. But we are so thankful we found it as early as we did. I'll write more later as it helps to come here to get my thoughts down, but tonight I'm going to wind down.

We leave tomorrow for Atlanta. We expect to be there for 7 weeks. This weekend Tre' and I will attend a symposium for parents of pediatric brain tumor patients. I'm looking forward to it and I really think we'll gain a lot of useful knowledge. We have Monday free! WooHoo!! Things get started early Tuesday morning as we report to "The Egg" at 6:00AM. We see Dr. Claire on Wednesday and I think we'll start radiation on Thursday or Friday.

We'll update soon!
Love to all,
Jenny

Friday, September 16, 2005 9:13 PM CDT

Out of the blue today, Catie looked at me and patted her head and said, "I no have hair Momma." An obvious statement, yes, but it still kind of stopped me in my tracks as she never stated it out loud. I asked her if she knew what made her hair fall out and she said, "yes, chemo." I didn't know she knew that.

Catie was so young when she was diagnosed that there was no need for explanations. We couldn't even explain to her why we held her down while people poked her arms and wrists and feet with needles (boy do I love that port!!). That was hard but it came with it's bonus too. She was too young to know to be scared of cancer. I can't imagine how hard that has to be for older kids and their parents. She's older now, and as time has passed she has need more explanations about procedures and medicines and doctors. She'll ask me when I come at her with a medicine syringe, "What that Momma?" I'll answer and then she'll ask, "What that for?" Still, her comment today took me by surprise.

She's now asking daily for barrettes and bows. Santa Claus is bringing them (or at least that's the plan we've made hoping enough hair has grown in by then to hold a barrette). She mentions most days, or at least every other day, that she's going to have a pony tail. Personally, I'm holding out for pigtails.

I honestly don't know what she'll look like with hair, she's never really had it. I really don't care, I just think it's going to be fun. Remind me of that when she's screaming and I'm brushing the tangles!! =) I wonder if she's going to like it or if it's going to feel hot to her. It will be interesting to see.

A whole entry on hair... that should let you know we're doing well. Dreaming a little about what we hope is to come(something we haven't done a lot of in the last 2 years).

Thanks for checking in. Please, continue to pray for Victoria, Jay, and John Michael.
Love to all,
Jenny
P.S. We'll be participating in William's Walk again this year. It's a 2K walk and 5K / 10K walk benefitting
The Brain Tumor Foundation for Children and will be held on Saturday, November 5. Our team is Catie's Cruisers and we hope some of you will consider joining our team. It's $15 if you plan to attend the event and $18 if you'd like to participate as a phantom runner. All who register (whether an actual participant or a phantom runner) will receive a t-shirt. You can register on-line or by phone or mail. Just click here and scroll down the page to find the link to register. Be sure to list Catie's Cruisers as the team you're joining. We had 35 participants last year and we'd love to have even more this year. E-mail or post to the guest book if you join our team so we can kind of keep track. Thanks to those who have already let us know they've joined.

Thursday Morning

Wednesday, September 14, 2005 8:43 PM CDT
We have a plan... We finally know what's coming in the next couple of months. We are so thankful for all of the people who have worked so hard to help us come to a decision. We are thankful for all of Dr. Claire's hard work and for the opinions that she received. We are thankful that the path was made clear and that we see the footprints that have gone ahead of us making a way. We are thankful to KNOW what's coming.

First, a little about why Boston didn't want Catie to receive proton beam... That machine uses protons for radiation and the one we will be using uses photons. There is some concern that the chance of secondary malignancies may be greater with protons than with photons. I don't know the science behind it, and this is all theoretical, but theoretical is all we have. The absolute experts in the field have looked at everything and I trust their judgement. Dr. Marcus's words to us today were that in trying to do good for Catie by using protons, we could have instead ended up doing more harm. So, I was glad to hear the reasoning behind the decision to help me understand why. It's amazing how much information and knowledge can help with my frame of mind.

Secondly, we are going to go to Atlanta for 6 weeks of radiation. Catie will probably have simulation (where they make her face mask to hold her head still and do things to "map out" the radiation) on Tuesday, 9/27. The physicists and computers will then map out everything so that the beams know where to go and we should begin radiation before the week is over. That gives us the rest of this week and all of next week off. We don't even have to have labs done. This will hands down be the LONGEST we have gone without seeing a doctor in almost exactly 2 years (barring any fevers or unusual happenings of course). All we will have is physical therapy. The break will be good as our schedule will be pretty crazy once we get to Atlanta. We will be at Egleston/Emory for a couple of hours every weekday morning for 6 weeks for sedation and radiation. We will probably have 2 clinic visits a week to see Dr. Claire. When you throw in PT once or twice a week, you end up with a full schedule.

Catie will be receive focal radiation to the tumor bed. She will not receive cranio-spinal radiation. We hope this will prevent the majority of cognitive loss. The decision to do only focal and not cranio-spinal (standard medulloblastoma treatment usually includes both) was made b/c of Catie's good staging at diagnosis (it was M0 which means there was no spread), good pathology, and her increased risk of secondary malignancies. There is a long list of possible side effects, both accute and long-term. We will write more about those as we approach radiation. For now we'll list some prayer requests.

1. Please pray for our friends, particularly Victoria and Jay who are fighting medulloblastoma relapse. Also pray that John Michael's marrow will begin producing blood and platelets on its own so that he can become less dependent on transfusions. Links can be found by clicking the friends link above.
2. Please pray that any remaining cancer cells in Catie's body are in the radiation field and that they will be completely obliterated by the radiation. Pray that no cancer cells survive this treatment.
3. Pray that side effects will be limited, particularly secondary tumors and malignancies as this is our biggest worry. Pray that her cognitive function will remain intact.
4. Pray that she handles the immediate effects of radiation well.

Coming away from today's appointment I think Tre' and I both felt a sense of relief. We already felt radiation was our best option and we came away even more convinced. I know there are risks and I know we may be battling again someday. But our first goal is to beat THIS cancer and this is Catie's best chance to beat it. We welcome the opportunity to do so. We don't know what the future holds. If we have to deal with it again, we have to deal with it again. But we know we'll be dealing with it if we don't do radiation. So we proceed with clear heads, knowing we've made the best decision we can with information and input from the best doctors in the field.

As we drove home today my mind wandered (until I dozed off anyway -- don't worry, Tre' was driving then). We now know that Catie has completed her chemotherapy for this course of her treatment -- check out the last bag, hung by Mandy, at the top of the page. I can tell you that when she was diagnosed I thought 2 years sounded like an eternity. She was only one, had just turned one and we had to do this to her for 2 years. But she's done it. And she'll do the next leg of treatment as well and then, I pray so very hard, that she'll have some well-deserved normalcy, and lots of it (years and years and decades and decades of it). Maybe preschool, playdates we've had to miss b/c of low counts, Sunday School, maybe even a visit to the fun kid's place at the mall that we've avoided like the plague. I pray we'll get used to going 10 days or even a month, and maybe even 3 months without going to the doctor. I know I'll always be a little paranoid with Catie and with good reason (Dr. Claire calls it "healthy paranoia," I like that). The treatments we've exposed her to can affect her down the road. She must continue to be scanned to be sure she is clear. Scans will always make me nervous b/c there's a reason she will need to be scanned, it's not just for the fun of it. We will always be looking and watching, praying and trusting.

Thank you for continuing to stick with us and pray for us. Please continue to do so for us and for our friends as well.

Love to all,
Jenny

Tuesday night

NEW PICTURES ADDED
I wrote a nice, long, lovely update for you and it has disappeared into cyberspace. Oh well. Better luck next time. We head to Atlanta tomorrow and we will meet w/ Dr. Marcus at 1:00. We'll update tomorrow night if we can.
Love to all,
Jenny

Sunday, September 11, 2005 10:19 PM
I come here tonight with so much to say. The last week has been a full one in many ways. I know that many of you have been waiting on our news from Boston. I haven't come here to write of our news b/c I wanted to wait until I knew our precise plan. While our plan is not yet in place, this is what I can share so far. More than likely Catie will not be a candidate for proton radiation. We are meeting with Dr. Marcus, a radiation oncologist with CHOA/Emory in Atlanta on Wednesday to discuss IMRT/3D conformal radiation. He is an outstanding doctor in his field (Radiation Oncology Chair for COG - Children's Oncology Group) and we have heard wonderful things about him. He has talked with Dr. Claire and he and Dr. Tarbell (from Boston) will be talking about Catie's case as well. While we are diappointed that Catie does not appear to be elligible for protons, the other radiation options offer her an equal chance at a cure. I will share more about all of this later. Please do continue to pray for wisdom for all involved, that we achieve Catie's cure, and for peace for Tre' and I about the decisions we face. Side effects for radiation to the brain, especially a young brain, are not always easy ones to swallow. But they are easier to swallow than the alternative. Catie is quickly approaching the magic age of 3 (she'll be there in a couple of weeks) when a great percentage of brain development has taken place, but her brain is still young and radiation is very powerful. It is a wonderful tool, but it is not yet a perfect tool.

Catie is feeling much better for the most part. We're still loving Robitussin as her cough at night could drive you to drink, but she's been much more herself since Thursday. Thanks for all of your well wishes for her.

Some of you may be wondering about the picture at the top of the page. It's a picture of some of us cancer mommies that was taken at a luncheon hosted by Chris Glavine (Tom Glavine's wife) for CureSearch. It was a beautiful luncheon that many of us moms were fortunate enough and very grateful to attend. The luncheon was amazing for many reasons... for the beautiful atmosphere created, the speakers (Linda Armstrong and Liz Scott, mom of Alex Scott who started Alex's Lemonade Stand), the fun silent auction (w/ awesome items by the way), but most of all b/c of the sense of community and understanding between all of us cancer parents.

Liz Scott shared her daughter, Alex's story. It was so heartfelt and genuine and one that so many in the room could identify with. Many tears were shed as she spoke of her daughter's brave fight, amazing spunk, determination, and selflessness. What an amazing difference her 8 years on this earth made.

As I sat there I wondered about the moms who sat in the room... I wondered about our children... I wondered about us as a group collectively, about the things we have seen... I wonder how many radiation treatments, chemotherapy infusions, and surgeries we had seen our kids go through.... How many shots had we seen given or given ourselves, how many jellybean buckets (you know, the puke buckets) we owned among all of us and how many times we'd held them for our kids, how many nights we'd slept (ok, haha, stayed) in the hospital, how many doses of oral meds we had given (that would be one gargantuan (sp?) number)... how many hours we'd spent in the clinic (another biggie), how many CBCs we'd seen drawn, or fingers pricked or IVs started... how many success stories were in the room? not so great endings? how many prayers said and tears shed (uncountable I'm sure)... How many MRIs, nuke med scans, CTs, x-rays, etc. had been done on our kids. how many relapses, how many more? How many bottles of Purell we had purchased collectively (we've kept them in business -- I promise!). You catch my drift. I guess the fact that all of our kids have walked the halls of the cancer floor and have shared those breezy bald heads gives us an immediate understanding of each other on many levels. Your fears are known and understood without being spoken. The unspeakable joy of a birthday is as well. You don't usually shake hands with these folks, you embrace and you squeeze hard... you laugh and you cry and you do both at the same time... you ask about scans and you share your latest news and you throw in all the acronyms without worrying b/c they know them as well as they know their children's names too. It's hard to explain the bond you feel, but it is quite strong. I am so thankful for all of the people we've met on this journey, though I wish we were all on a different trip.

So... to Chris Glavine, Kristin Connor, CureSearch and all involved... Thank you, thank you, thank you. Thank you for putting us all together in a room fully dressed (not in hospital garb), with make-up on and hair fixed. Thank you for allowing us the opportunity to sit together and share. But most of all... thank you for raising all of the money you raised yesterday so that in the future we won't need a luncheon to share our stories and our fears. We'll need a luncheon celebrating the end of this dreaded disease for all kids.

To the girls I rode with, shopped with, and ate with yesterday, thanks to you guys too. It was a day that truly refilled my cup and I'm thankful to call you friends. D.D. , I hate you missed seeing Steve S. -- I mean South Carolina -- get beat in person, but I sure am glad that you were at the luncheon!

We'll update later in the week.

Love to all,
Jenny

Wednesday, September 7, 2005 7:03 PM CDT

Ok, this will be quick as we are exhausted. We are still in Atlanta and we have no definitive answers yet.

Catie has caught a cold from me and she's felt pretty crummy yesterday and today but we're managing. We bought ourselves a late-night trip the the Scottish Rite ER last night as Catie did not drink well all day (sore throat) and then threw up most of what I got her to drink last night. With a GFR scheduled for this morning I knew she needed to be well hydrated, so off we went. We were in and out in a record 3 hours which is QUITE impressive (only 4 hours of sleep though). We spent over 11 hours at Scottish Rite today for various tests and appointments. Dr. Claire gave us a good dose of rocephin (sp?) in case Catie spikes a temp tonight. That will keep us from having to go in unless it's a super high temp. She also got a fluid bolus and cultures drawn just to be safe. We'll go in again in the morning to see Dr. Claire and we may have one other test done. We'll update more, but right now we're off to bed.
Love to all. Keep praying,
Jenny

Friday, September 2, 2005 12:16 AM CDT

We continue to watch the events unfold in New Orleans and the surrounding areas and we are astounded by the damage. Our prayers are with all of the people affected by the devastation there.

Some smiles and "Catieisms"today.

*At the Ronald McDonald House a couple of weeks ago...
Catie, GaGa (Tre's mom), and I were going through some cool weather clothes we had just gotten for her to be sure they fit. We had just finished up and put her pjs on her as it was almost bedtime. The shirt for her pjs are gathered at the bottom. She begin to pick up her new socks and drop them into the top of her shirt one pair at a time. I giggled to myself imagining her doing the same thing in ten years or so. I asked her what she was doing and she looked me dead in the eye and said, "These my boobies Mama." Well, you can imagine the laughter that bubbled out from GaGa and I as she continued to drop socks in. The socks then fell to the bottom of her shirt and she looked at me with a laugh and a twinkle in her eye and said, "My boobies in my tummy Mama." I think this one will go in the scrapbook!

*This weekend we flew a fun battery powered airplane that PaPa had given Catie. We live way in the country, so to get a good open place to fly them we only had to drive down to our neighbors yard (too wooded at our house). The plane flew great, but no matter where we aimed it or let it go, it always seemed to fly toward the tall pine trees and ended up getting stuck more than once. So... when Catie and I were discussing our upcoming (we hope) trip to Boston and flying on an airplane, she got very excited. The she suddenly stopped and looked at me anxiously and asked, "Our airplane go in tree Mama?"

We're beginning to muddle our way through potty training. I've been putting it off b/c of all the fluids she has to get every time she goes inpatient. But, I think she's ready. Hopefully it won't take us too long and hopefully we don't have any hospital stays coming up.

If you'd like some good news, a miracle in fact, check in on Jacob D. from FL (link above). I love stories like that!

Keep on praying, remember that Wednesday is the really big day.

Love to all,
Jenny

Tuesday, August 30, 2005 8:46 PM CDT

Hi guys! Catie is doing well. She's still seems a little tired at times and is napping a little longer than usual, but she is doing well. Hopefully later this week I'll have time to share some of the funny things she's said this week. I love to see how her brain works and sometimes she says things that just crack me up.

I talked w/ Boston again today and they have received all of Catie's info (took 5 disks!!). A HUGE, HUGE thanks to the folks in Atlanta who worked so hard to get her stuff together quickly for us. We appreciate it so VERY much. There isn't room to get her on tomorrow's agenda, so her case will be addressed on Tuesday and Wed. of next week. Wednesday's meeting is the big meeting. Please pray that they agree w/ the decisions we've made and that they accept her into their program.

It looks like this will be my last week of work for a while (I've been working 2 mornings a week w/ Babies Can't Wait, a program for kids age 0-3 with developmental delays) as our schedule is very erratic and we're about to be gone (we hope!). Next week we have appointments in Atlanta on Wednesday, so we will come to town on Tuesday.

There are so many issues that we could use prayers on regarding the next 10-11 weeks... getting Catie into the proton program is, of course, the biggie... housing (be it our top choice - RMcD House, the Hope Lodge, or Hospitality homes), transportation (we will have little time to make things work as there will probably be less than a week between finding out elligibility and our first appointment)... protection for Catie during treatment if we get in (protection from secondary tumors or malignancies, of parts of the brain that effect growth and puberty hormones, her thyroid, her temporal lobe so that she doesn't lose much cognitively, that she feels ok)... I could probably keep going.

There is a bit of anxiety (if that's the right word for it) as we head into the days and weeks ahead, but I truly feel that this is the best course for Catie. I wish we could protect her from it and that she didn't need it, but she does. So we go forward, confident that the path has been made and we need only to keep our eyes on the footprints in front of us.

Thanks for checking in. And please, do check in on our buddies as well, especially Colin's family and Jacob D. and his family.
Love,
Jenny

Monday, August 29, 2005 8:46 PM CDT
Hi guys! Well, we made some headway today. I talked with the coordinator for the peds proton program in Boston for about an hour today. She was wonderful and so very, very helpful. She learned more about Catie and her story and I learned more about the process we are going through right now. Catie has to be approved by 2 committees to enter the proton program. If all Catie's "stuff" made it quickly enough the first committee could discuss her case on Wednesday. I look for this to happen next Wednesday as there is a lot of material to sift through in Catie's file. So, I suspect that both committees will meet on her next week. We should know pretty quickly after them whether or not she is elligible.

If she is elligible, the coordinator told me that she had room for Catie's consultation starting on 9/12. The consultation and tests they would need to run would take 3 days. We would then be able to come home for a week and a half or so before beginning radiation. The tentative date mentioned to start was Catie's birthday. What do you know? Another significant birthday. We'll take it... but we want boring, have a blast birthdays from here on out (and lots of them!!). =)

Our prayers tonight are with the people affected by Hurricane Katrina and with Colin's family. Colin's battled ended yesterday and we know the real struggles are just beginning for his family. Jacob D's family (from FL) could also use your prayers.

Thanks for checking in. We have a busy day tomorrow w/ physical therapy, a clinic visit, and fitting for new orthotics (for those growing feet). We hope to squeeze in a little swimming at Aunt Tati's house.

Hugs to all,
Jenny

Saturday, August 27, 2005 9:14 PM CDT

Hi guys! Hope you're weekend is going well. We are doing well. Catie has followed her "normal routine" for the first few days following cisplatin. The first 2 days home, she is WIRED!!! Coming off of the benadryl/phenergan and sleeping for for 2 days give her a ton of energy. However, her body is still tired and weak from the chemo and from not eating. It makes for and interesting combination as she is very wobbly but wants to go full speed. The third day home, today, she is usually pretty tired. She was in a good mood today, just a little on the tired side (which she proved with her 2 and a half hour nap late this afternoon). She's had some interesting moods as well. I can only imagine what it feels like coming off all the meds she's on in the hospital.

We're hoping to get in a couple of solid weeks at home. We have travelled to Atlanta 5 of the last 10 weeks and we're kind of tired. This summer has been full of the unknown and of waiting. Now it's time to wait for the word that we've "gotten in" at Boston. I pray that we get in in the next 2-5 weeks so that Catie doesn't have to get another round of chemo.

There are so many kids tonight who need your prayers. Please pray especially hard tonight for Colin's family (link under friends above) and Jacob D.'s family (/fl/jacob) as it seems they have little time left with their sweet, brave boys. Victoria and Jay could use extra prayers as they battle relapse against medulloblastoma (links above). There are so many kids.

Thanks for checking in,
Jenny

Thursday, August 25, 2005 11:25 PM

No update tonight, but check out the new pictures.

Wednesday, August 24, 2005 11:25 PM
Hi guys! We're home sweet home. Catie's sleeping soundly and that's where I'm headed too. We'll try to update (and start catching up on the mounds of e-mail in my inbox) tomorrow!
Thanks for checking in and for all your prayers and offers of help!
Love,
T, J, and C

Tuesday, August 23, 2005 11:25 AM
Burn the bag!!!!! I know we are never out of the woods of needing more chemo or relapse or any host of things I'd rather live in denial about, but I feel fairly sure that we won't ever get cisplatin again!!!!! So my words to Kelli today when she took it down were, "BURN THAT BAG!!" Catie was able to get 8 rounds of cisplatin at FULL dose! Often the dose has to be lowered b/c of hearing loss, but thus far our prayers have been answered. Her hearing has remained perfectly normal and we pray it continues to do so.

The prayer request of the day/week is for us to get in at Boston in the next 3-6 weeks. With only 2 proton beam machines in the country, you can imagine that getting time on them can be difficult. Add the fact that Mass General (where we want to go) is not a children's hospital which limits the amount of time devoted to peds and you've got more of a challenge. Add the fact that they are a very protocol driven hospital and we are off protocol b/c of our situation and ... well, you get the picture. The doc there said it would be difficult, but not impossible. If we can't get in in 3-6 weeks we'll do another round of cytoxin and then try again. If they say they can't do her we'll try the other machine in southern California. Dr. Claire really feels like Boston would be best for us though so that's what we want.

Dr. Claire went over the risks and benefits with us yesterday... not all fun stuff for sure, but risks that are worth it. We sure hope we're limiting things by going with proton beam.

Your notes here and at my e-mail account have been amazing. Thank you so very much -- you have no idea how very much it means and how your encouragement makes a difference. When we get home I'll be going back through your e-mails and getting back with all of you who have offered info on Boston!

We'll update more soon.
Love,
Jenny
Monday, August 22, 2005 12:49 AM CDT

I don't know if any of you folks our there are fans of the Indigo Girls or not. I fell in love with their music in college and one of my favorite songs was "The Wood Song." The first line of that song has been stuck in my head for weeks now... "The thin horizon of a plan is almost clear..."

Well... now... it is beginning to be clearer! I talked with Dr. Claire this morning and she said her recommendation is to do this round of cisplatin (the yucky one) and to then move ahead to 6 weeks of proton beam radiation in Boston (so much for those weekly trips to Hotlanta L and N). She said the opinions continued to be all over the board, but the people she trusts the most and who know the most about the treatment of a young medullo patient recommended this option. The main reasons for this, if I understand correctly, are:

A. Though there was not a great deal of tumor left, there were still tumor cells remaining after all of the chemo she received. Whose to say that give higher doses of chemo is going to be enough.
B. Using proton beam allows us to protect Catie hearing, and to save a lot of cognitive loss that we would risk w/ regular radiation. Also, Catie will have reached that magic age of 3 in time to begin this. This is helpful b/c while her brain continues to develop, a huge percentage of brain development is complete by age 3.
C. Though the risk of secondary tumors (benign or malignant) is higher for Catie than for the average population, Dr. Claire is concerned that she may have a higher risk of developing secondary maliginancies from chemotherapy as well. In general secondary tumors/malignancies from radiation are easier to treat than those that arise from chemotherapy.

Two weeks ago I would not have been ready to agree to radiation. I have feared it for so long, and I still do to a point. However, after doing some reading on my own and listening to Dr. Claire (who has consulted with experts in the field nationally and even a few internationally), I am comfortable with this decision. God has really given me a peace. It has been present as we've waited and remains now that we know.

We do not take the decision lightly and we know that we may deal with the effects of this down the road. But, I truly feel that this is what is best given our situation.

There are many prayer requests that come now that the decision is made, but I will save those for another entry. For now there are so many feelings:

Astonishment that Catie will complete her 24th and final "planned" round of chemotherapy in the next 2 and a half days.

Believe it or not... a bit of sadness as we say goodbye to the nurses of 3 North this week. We know that we'll come back to visit but they have loved us through so much these last 2 years and they have watched Catie grow and blossom. They are truly family (as are you awesome nurses on the 1st floor we had so long ago and at Backus) and we will always be thankful for the amazing love and quality of care they have given to Catie and so many other kids. There are no words big enough to thank them for all they've done.

The need to act... to plan our travel, to know dates, to line up housing, to set everything up as best we can. Should we fly? Can we use angel flight? Will we need our car or can we just use public transportation? Will Catie feel well enough for us to do some things while we're there? I've always wanted to visit Boston, especially in the fall... just never planned for it to be this way.

Relief and fear... The end of treatment is now in sight in many ways. Such a relief... But will it be enough? Will it kill every cell? Can we do weekly scans???? HAHAHAHA!!!

Gratefulness for the grace that has brought us this far... for the loving hands that have carried us when we couldn't stand... for the prayers that have brought strength and peace and comfort....

So many other things, but we have to head to the clinic shortly. We haven't seen Dr. Claire yet today, we got all of our info over the phone. So here's to hoping counts are high enough to get started on what I pray with all of my being is the very last round of chemo Catie ever needs.

Love to all,
Jenny

Sunday, August 21, 2005 10:48 PM

Hi all! Just a quick update to let you know we're doing well. We're still in Atlanta and we had a great weekend!! We went to the laser show at Stone Mountain (which a certain little girl ABSOLUTELY LOVED!), we've gone swimming, visited with friends, hung out with family, and we've even found a little time to be lazy! We are officially exhausted and I don't think anyone will have trouble sleeping tonight. Catie's appt. w/ Dr. Claire is tomorrow afternoon. We know we'll be doing chemo of some sort, hopefully by this time tomorrow night it will be running and I can share our new plan with you. No promises, but I'm keeping my fingers crossed. Please continue to pray as we face tough decisions.

Amazingly enough I really have a peaceful feeling about tomorrow. I'm sure I'll be antsy tomorrow b/c we just want to know what our lives will be like for the next several months, but we have not been anxious this weekend. That can only be God's comfort and the answer to the hundreds of prayers. Thank you so much.

I'm way behind on e-mail. and I haven't been able to post to sites much this week. Know we'll get back on top of things when we get home to our own computer. For tonight... big hugs and prayers for Trenton, Jay, Colin, Victoria, and Hannah.

We'll update when we have news.
Love,
Jenny

P.S. In case I haven't mentioned it lately, we are so VERY thankful for the Ronald McD House and all they do to make our lives easier. We have stayed here a total of 87 nights since our journey started and I don't know what we would have done without them. You can always save pop tabs from Coke cans to help them out. Or sign up to take a meal to your local R McD House. You have no idea what a help it is!!

Wednesday, August 17

Catie's test results all looked good today. Her MRI showed some enhancement, but that is from the surgical glue used following surgery to prevent bleeding. I didn't get to look at the scan today, but hope to see it on Monday. For now, we're just so thankful that things look good.

Our options, as I understand them, are as follows.

1. Stem cell transplant (single or triple)
2. Finish our current treatment protocol (3 treatments left) and then go to Boston, MA for proton beam radiation
3. Stem cell transplant followed by proton beam radiation

To be honest, I don't know which one I want. Dr. Claire isn't sure either. In my mind I seem to go back and forth among all of them as they all have risks and benefits. Stem cell brings risks to organs and for infection as well as a need for a larger number of blood product transfusions. I know that her bone marrow is already somewhat tired (her ANC is 840 today which isn't horrible but isn't great either -- it's usually much higher by this point as she is due for chemo on Friday). Radiation brings the risk of loss of some cognitive skills (such as processing which worries the teacher in me b/c I know how hard it can be for kids with processing problems) and the risk of secondary cancers (which scares me even more). The thrid option would be exceptionally challenging for Catie. I hate to have to put her through anything we don't have to, but I also don't want to give the remaining cancer cells any hope of surviving. Dr. Claire is looking more at options 1 and 2 but option 3 is on the table. We will do chemo of some sort on Monday.

The decision is not easy and it is not clear cut. God has made our path clear thus far and I ask you to pray with us that He will do so again. It is so important to feel that we have chosen what is best for Catie. Dr. Claire is consulting with people all over... she even mentioned Australia today. I know that she is doing/ has done all that she can do. I ask you to pray for her... for God to guide her... and for Him to guide Tre' and I in the same direction. He has gone ahead of us, I know that. Please pray that we have the wisdom to see His footprints.

Thank you for checking in. Your support means more than you will ever know.
Love,
Jenny

P.S. Dr. Claire was so impressed with how well Catie was moving after sedation today. I can't wait for her to see her when she hasn't been "knocked out" for 2 and 1/2 hours!!

Tuesday, August 16, 2005 12:15 AM CDT

Hi guys!
We were planning on going to Atlanta this week, but not until Friday. Ms. Ann (Dr. Claire's nurse practioner) called me this morning with our appt. for MRI, the only one available all week. It's tomorrow!!!!! That sent me into speed mode as we try to get ready to leave this afternoon. I am thankful that we could get an appt. this week! So... Catie will have her kidney test (required w/ the protocol she's been on) at 9:00 in the morning, MRI at noon (we have to be there at 11:00 b/c of sedation), and an appt. w/ Dr. Claire at 3:30. We will hang out in Atlanta until Monday when we will do chemo. Dr. Claire is still waiting on 3-4 calls to be returned. We are hoping they come in this week so that we can start our new plan, whatever that will be, on Monday. Please pray for our first CLEAR MRI. Please pray for her body to be free from this disease, for wisdom as we make decisions, for clarity, for an easy road through treatment for her... Your prayers continue to make a difference in our journey and in the journey of others.

Jay, Victoria,Trenton, Hannah, and John Michael (links above) could all use some encouragement right now.

We'll update w/ MRI results tomorrow.

Love,
Jenny
P.S. Thanks to all who have pointed us in the direction of folks who have had proton beam done in Mass. or who have connections in Southern California (where the other proton beam machine is). We will DEFINITELY be calling you if that's the direction that we go. Gotta go pack.

Monday, August 15, 2005 2:43 PM CDT

We're back. Enjoy the new pics for now. We'll update soon. Don't forget to click on our friends link above.

Thursday, August 11, 2005 9:16 PM CDT

We talked to Dr. Claire tonight. She's still waiting to hear from 2 people. The opinions she has gotten have run the gammett (sp?) from finishing her original protocol to doing radiation. She knew this was going to be the case and warned us that it would be. She is sort of leaning towards stem cell, but wants to talk to the head of the proton beam program in Massachusetts. (Proton beam is a more precise form of radiation that allows less good tissue to be damaged/affected by radiation. There are only 2 facilities in the nation: Massachusetts and California.)

She also wants to send frozen sample of the tumor tissue from the first adn second surgeries to Dr. Berger (sp?), "the man" when it comes to neurooncology pathology. He is studying nodular medulloblastoma (the kind Catie has) and his input will be valuable. Next week we wil probably do cisplatin (the next round of our old protocol) to give ourselves a few more weeks. Dr. Claire said she is comfortable doing this without scanning but that she would not have a problem scanning her. I think that we would like to scan her if we're going to do this round just to be safe. Please pray for wisdom and that we will do what's best for Catie. If it's time to switch to something new now and we don't need to wait, please pray that the other opinions will come in quickly enough to make this possible. I'll write more soon as we talked about a lot today. I felt better, as usual, after talking to Dr. Claire... she is a truly gifted woman who is doing what she was called to do. I'm so thankful that we have her.
Hugs to all,
Jenny
P.S. If I don't update for the next few days, no worries... We're headed to Tybee on Saturday.

Wednesday, August 10, 2005 9:16 PM CDT
Hi Guys!
We are doing well. Still no word yet, but we are hopeful that we will know something by the weekend. I talked w/ Danielle (Catie's nurse at the Clinic in Atlanta) and she said that Dr. Claire was in tumor board discussing Catie's case this afternoon. She is also still waiting on a couple of phone calls to be returned. Hopefully we will have a plan in place before the weekend starts! We've done really well waiting, but I have to admit, I think I'm ready to know. I'm ready to wrap my mind around what lies ahead so that we can try to prepare for it.

Often as I think through things during the day or at night, my thought process goes along in the form of a journal entry here. There's something very therapeutic about coming here and writing. However, all to often, by the time I get to the computer my clarity of thought and the right words seem to vanish into thin air. Perhaps one day soon, I'll be able to come here and better put into words all that's gone on in our minds as we wait. But for tonight a few thoughts about others on this journey with us. Others with whom I have spoken with or read their journals in the last day or 2.

I talked with a friend yesterday whose mommy radar was off the chart as her son, a cancer survivor, had a fever (that she didn't know the cause of) and had complained of leg pain at one point during the day. The fear in her voice was evident and my heart ached for her b/c the fear is AWFUL and it is real. On this road, unexplained fevers or headaches or vomiting or general pain can send us cancer parents through the roof with worry. You KNOW that kids get sick with NORMAL kid stuff, but it seems so easy for you mind to immediately jump to the scary stuff. Life is never the same... Your prayers are needed even when things seem to be going well.

I talked with a friend today who's little girl passed away almost a year ago... If only I knew how to help her and her husband and all of the far too many other parents who are walking in their shoes. If only no one else had to go through what they're going through... The reality of it for them and the possibility of it for others... life is never the same... Your prayers are needed long after a battle against this disease is won in the ultimate victory.

Earlier today I checked on 2 friends who had scans yesterday. Kids we've met and been to family camp with... One has 4 new tumors in his brain, Jay . Please pray for him and his family. The other has a suspicious spot that could very well just be an anomaly, but scans must be done again in 30 days to be sure it is not cancer. Please pray for Super Ryan . Your prayers are needed every day.

Just a few moments ago I checked on another friend who is off treatment and doing well. It has been a year and a few days since she was diagnosed and you would have a hard time telling how much she's been through in the last year. Her mom wrote of the challenges of the last year, but chose to focus on the good things that have happened on their journey, the things they have to be grateful for. This mom's life and the life of her family were forever changed a year ago, but they have found the bright spot. Life is never the same...
Your prayers are still needed.

We're approaching 2 years since Catie's diagnosis and I can tell you that our life has been forever changed. There are fears and joys that we never would have felt had we not been on this journey. That entry is not for tonight though... it is late and my eyelids are heavy... Perhaps in the next entry. For now, stop by and visit our friends (click above) and let them know you're praying for them. It does make a difference.

Know that we'll update as soon as we know our plan.
Hugs to all,
Jenny

Monday, August 8, 2005 9:00 PM CDT

NEW PICTURES ADDED MONDAY 8/8

I am so very thankful that Catie has recovered as well and as quickly as she has. She is walking completely on her own. She is happy and she feels well. She is inquisitive and talkative and very much the almost 3 year old she should be. I have noticed that since she has started feeling better following this surgery she seems to giggle more easily... you know the good belly shaking, laughing till you can't breathe laugh. Oh how I love that sound and how infectious it is... The laughter of children has to be one of God's most special gifts. We are enjoying this time and preparing ourselves for what is to come (though we still don't know what our plan is).

Dr. Claire was out of town last week. I expect to hear from her or from Danielle at some point this week. I've made myself promise not to call them until at least Wednesday afternoon. I know they're probably swamped with Dr. Claire being gone last week. I do expect we will head to Atlanta next week for whatever it is we are doing. It will either be a 5 day treatment or a round to get Catie's body ready to harvest her stem cells. You'll know when we know.

Check out the new link we've added above. It's a link to all of our friends. Just click on any one of the names above and you'll be taken to a page that has many links on it. A big thanks to Catie's Granny Liz for doing this page for us. If your name is there and you don't want it there, just let us know and we'll take it off. We have tried to get an e-mail to everyone to let them know about it to be sure it was ok. Also, if your link is not there and you would like for us to add it, please let me know. And... if you would like to link to the links page on your website please feel free to do so.

We hope that you and yours are doing well. Please continue to pray for Ethan's family and for all of the kids who continue to fight so hard.

Love to all,
Jenny

Wednesday, August 3, 2005 1:22 PM CDT

Sweet Ethan has won his battle and is cancer free today. Our hearts are breaking for his parents, brother, sister, and all those who loved him. We pray that they feel the arms of God and the peace that only He can give carrying through the days, weeks, and months ahead.

Tuesday, August 2, 2005 10:32 PM CDT

Hi guys! Today was a busy day! It started off w/ PT. We have started to do one of her 2 sessions a week at the West Rehab office. Catie really enjoys this and likes to check everything out that they have! The 2nd session of the week we will continue to do at home. It's nice to add some variety. We came home, Catie caught a quick nap, and then we headed to Savannah. First, we stopped by Dr. Cossio's office. He is Catie's pediatrician who we NEVER get to see b/c we head to the oncologist for any illness right now. It was good to see him and he took Catie's remaining staples out for us. Then we headed over to the clinic for counts. They are moving in the right direction, so this was a good stop as well. On the way home we were able to go to Aunt Tasha and Uncle Chad's house for a dip in their pool. This was the first time since surgery that she's been able to go swimming (had to wait for the staples to come out), and she was ready. She is walking EVERYWHERE!! She's not moving as quickly as she was before the surgery, and there are a couple of things she could do then that she hasn't quite gotten back yet, but overall, it AMAZING!! I am so thankful that she has recovered so well and feels well right now. She's also lost 2 pounds since Thursday. She's still 4 and 1/2 pounds above where she was at the beginning of this, but she's already lost 4 pounds of the steroid pudge. I'll try to put up some pics in the next couple of days. For now... I'm tired, so it's off to bed for me!

Thanks for checking in! Continue to remember Ethan and Victoria (links below). Also Trenton has just started his chemo for his 1st stem cell transplant. Keep his family in your prayers as well!
Thanks,
Jenny

Monday, August 1, 2005 10:32 PM CDT
Hi all!

We are home and we are refreshed. I'm so thankful that Tybee is so close and that GaGa and PaPa have a house there. It has been a really great place to go and rejuvenate this summer.

I feel like I'm getting my wits back about me after the last few weeks. On the one hand we have been blessed in so many ways. Just the fact that we DID surgery is a huge blessing. It is done so infrequently (a 2nd look surgery) with this kind of cancer. So even though the news was not what we wanted, thank goodness we went in to find out what the news was. Catie's recovery has been nothing short of miraculous as far as I'm concerned. She is walking and talking. Her balance is improving every day. Today was the first day she's walked around without someone right behind her the whole time. She really did well and only fell a couple of times. At this time the first go round she had just had her 5th surgery in 24 days, had not had chemo, and we were still 2 weeks away from coming home. We are so thankful for her speedy recovery. The support we have had has been incredible and has eased the journey in amazing ways. From food, to messages, to cards to prayers, to hugs, to listening... you name it we're thankful for it. So many blessings...

On the other hand, facing this monster called cancer is challenging. Knowing Catie has been battling so hard and that the cancer remains is difficult. Yet that difficulty is tempered with the fact that it did not grow... Knowing what lies ahead is intimidating and, in many ways, frightening. Yet Catie still has the chance to fight.

I think the word of the week for me last week was tired. Tired, discouraged, frustrated... We have remained fairly optimistic throughout this ordeal, optimistic and realistic. But there are days that are hard and feel heavy and last week just felt like a WEEK that was hard and heavy. It took me a while to get my bearings again, a while to be ready to get back to the business of forging ahead. A parent's role in the world of childhood cancer cannot compare with what the child must face, but it is taxing and tiring. It was hard being so close to the end of treatment and then feeling like we were thrown back to the beginning after all this time. But we are putting our boxing gloves back on and getting ready to put up one heck of a fight. Please continue to pray as I know the decision process continues concerning the proper course of treatment for Catie.

Last week was hard as well because of the battles of other kids. I learned that Ethan has gone home on hospice. I also learned that Victoria , who is battling the same cancer as Catie, has relapsed. Please pray for these families as they face incredibly tough days. Stop by and let them know that you are praying. Your encouragement can really make a difference.

Thanks for encouraging us!
Love,
Tre', Jenny, and Catie

Tuesday, August 2, 2005 10:32 PM CDT

Hi guys! Today was a busy day! It started off w/ PT. We have started to do one of her 2 sessions a week at the West Rehab office. Catie really enjoys this and likes to check everything out that they have! The 2nd session of the week we will continue to do at home. It's nice to add some variety. We came home, Catie caught a quick nap, and then we headed to Savannah. First, we stopped by Dr. Cossio's office. He is Catie's pediatrician who we NEVER get to see b/c we head to the oncologist for any illness right now. It was good to see him and he took Catie's remaining staples out for us. Then we headed over to the clinic for counts. They are moving in the right direction, so this was a good stop as well. On the way home we were able to go to Aunt Tasha and Uncle Chad's house for a dip in their pool. This was the first time since surgery that she's been able to go swimming (had to wait for the staples to come out), and she was ready. She is walking EVERYWHERE!! She's not moving as quickly as she was before the surgery, and there are a couple of things she could do then that she hasn't quite gotten back yet, but overall, it AMAZING!! I am so thankful that she has recovered so well and feels well right now. She's also lost 2 pounds since Thursday. She's still 4 and 1/2 pounds above where she was at the beginning of this, but she's already lost 4 pounds of the steroid pudge. I'll try to put up some pics in the next couple of days. For now... I'm tired, so it's off to bed for me!

Thanks for checking in! Continue to remember Ethan and Victoria (links below). Also Trenton has just started his chemo for his 1st stem cell transplant. Keep his family in your prayers as well!
Thanks,
Jenny

Monday, August 1, 2005 10:32 PM CDT
Hi all!

We are home and we are refreshed. I'm so thankful that Tybee is so close and that GaGa and PaPa have a house there. It has been a really great place to go and rejuvenate this summer.

I feel like I'm getting my wits back about me after the last few weeks. On the one hand we have been blessed in so many ways. Just the fact that we DID surgery is a huge blessing. It is done so infrequently (a 2nd look surgery) with this kind of cancer. So even though the news was not what we wanted, thank goodness we went in to find out what the news was. Catie's recovery has been nothing short of miraculous as far as I'm concerned. She is walking and talking. Her balance is improving every day. Today was the first day she's walked around without someone right behind her the whole time. She really did well and only fell a couple of times. At this time the first go round she had just had her 5th surgery in 24 days, had not had chemo, and we were still 2 weeks away from coming home. We are so thankful for her speedy recovery. The support we have had has been incredible and has eased the journey in amazing ways. From food, to messages, to cards to prayers, to hugs, to listening... you name it we're thankful for it. So many blessings...

On the other hand, facing this monster called cancer is challenging. Knowing Catie has been battling so hard and that the cancer remains is difficult. Yet that difficulty is tempered with the fact that it did not grow... Knowing what lies ahead is intimidating and, in many ways, frightening. Yet Catie still has the chance to fight.

I think the word of the week for me last week was tired. Tired, discouraged, frustrated... We have remained fairly optimistic throughout this ordeal, optimistic and realistic. But there are days that are hard and feel heavy and last week just felt like a WEEK that was hard and heavy. It took me a while to get my bearings again, a while to be ready to get back to the business of forging ahead. A parent's role in the world of childhood cancer cannot compare with what the child must face, but it is taxing and tiring. It was hard being so close to the end of treatment and then feeling like we were thrown back to the beginning after all this time. But we are putting our boxing gloves back on and getting ready to put up one heck of a fight. Please continue to pray as I know the decision process continues concerning the proper course of treatment for Catie.

Last week was hard as well because of the battles of other kids. I learned that Ethan has gone home on hospice. I also learned that Victoria , who is battling the same cancer as Catie, has relapsed. Please pray for these families as they face incredibly tough days. Stop by and let them know that you are praying. Your encouragement can really make a difference.

Thanks for encouraging us!
Love,
Tre', Jenny, and Catie

Friday, July 29, 2005 9:35 AM CDT

WE ARE AT THE BEACH THIS WEEKEND CATCHING CRABS AND PLAYING IN THE SAND. CATIE IS DOING GREAT. SHE IS GETTING EXTREMELY BRAVE WHEN IT COMES TO WALKING, SO WITH THE EXTRA 8 POUNDS SHE GAINED WITH STEROIDS WE ARE HAVING TO BE EXTRA CAREFUL BECAUSE SHE DOES NOT HAVE HER BALANCE BACK YET. HER EQUILIBRIUM IS MESSED UP FROM THE SURGERY BUT IT HAS ALSO BEEN EXAGERRATED BECAUSE OF THE WEIGHT GAIN.

THANKS FOR CHECKING IN ON US!

Tuesday, July 26, 2005 9:08 PM CDT

An answered prayer, Catie's spinal fluid was CLEAR!! Be sure to check out the pictures we added on Sunday.

Monday, July 25, 2005 9:08 PM CDT
The sweet sound of Catie's infectious laugh has returned to our house and oh how it is music to our ears. And those chubby cheeks make for the cutest face ever when she gets tickled. Oh how very thankful we are that she is feeling better. Also good... the constant demand for food has stopped!! And... she CHOSE to use her walker ON HER OWN this afternoon!!! Only to walk from the great room to her bedroom, but it was her choice without even a mention of it from any of us!!!!!

Tomorrow we have PT and music therapy for the first time since surgery. We are going to try going into the office for PT instead of doing it here at home to see how she likes it. I know that with the more demanding chemo schedule approaching our therapy schedule may be interrupted some. We hope to stay on some sort of schedule with it though as it has been so helpful. Please pray that the spinal tap done on Friday was indeed negative. I hope to know for sure by tomorrow and I haven't been nervous waiting until tonight.

That's all for tonight... just thought I'd share the good news. Please continue all of our friends, particularly Ethan and Victoria as they could use your prayers right now.

I'm leaving up some of the info. from the last post in case anyone missed it.

Thanks for checking in,
Jenny

Several people have asked what can be done to help. The biggest thing we need right now is prayer. However, if you want to do more, blood and platelets are always needed. If you live in the Savannah area, both Catie and John Michael have accounts set up at the Savannah Community Blood Bank. When you donate in their name they get a credit. You don't have to match their type or anything, but it helps folks who need blood and sometimes offers monetary assistance to the person whose name you donate in. I'm not sure how it works, but that is one thing you can do. If you don't live in the Savannah area just donate at your local American Red Cross or other blood bank in your area. Blood and platelets are always in high demand and can only come from your generous donations. Donations are always down in the summertime.

Someone asked in the last couple of weeks about financial gifts. Any of the organizations listed at the top of the web page are excellent candidates for donation. (There are a couple at the bottom as well.) They focus on different things and I have tried to include descriptions of each with the link provided. We have benefitted from all of the organizations listed in some shape, form, or fashion. Some of the organizations have ministered to our spirit, introduced us to other families and brain tumor survivors while others focus on research. All are amazing, but CureSearch is especially important. It's focus is on reaching the day when any child diagnosed with cancer can be guaranteed a cure. For us, that's number one b/c then we wouldn't need all of the other organizations that have come to mean so much to us. I believe that most of the organizations take donations in memory/honor of people, so it's a great way to honor people you care about.

Sunday, July 24, 2005 9:27 AM CDT

Hello from home! We got here around 8:30 last night. Catie is doing well and seems more herself that she has in over 2 weeks. Those steroids working there way out of her system lets us see our Catie shining through. It is a sight for sore eyes, trust me! Thanks for praying for her sweet spirit to come shining back through.

I woke her this morning to give her Zofran (tummy med) around 5:00 and she decided she had had enough sleep!! So Tre' stayed up with her so I could get some more sleep. =) The 2 of them had a good time and she was Little Miss Chatterbox. She woke me up around 9:00 (been a while since I've slept that late) to tell me that she had gone poo poo in the potty! Boy was she proud!! She's definitely ready to potty train, but I haven't bitten the bullet yet b/c of all the fluids she has to get when we're inpatient.

So, we're home, doing well, enjoying Catie feeling well, and soaking up every moment we have at home. We're praying for no fevers or infections and for the right decisions to be made. I know that simply doing Accutane w/ nothing else is not something we will do. Dr. Claire was on call for the weekend, so she discharged us and we had a chance to talk a little more. She said the things we're choosing between are definitely harder than what we've done. She also said that the 5 days of chemo is often not tolerated as well as the stem cell transplants. That was surprising to me. She'll be contacting more folks this week and we should be headed back up for whatever we're doing in 3-4 weeks. If we go for one of the stem cell options, we have to do a round of milder chemo first to get her body ready for the stem cell harvest. If we're doing the 5 day treatment (combo of cytoxin, vincristine, cisplatin, and etoposide), I assume we'll go ahead and start that then. For now, we're going to enjoy home and Catie feeling well.

We saw several friend inpatient this weekend. Jake and Ethan were in for fever. We also met Mikey , who was recently diagnosed with AML. In talking with friends on the floor, I learned that there were 6 new kids on the floor this week. How on earth there keep being so many kids having to fight I surely don't know. Stop by and visit our friends' sites when you get a chance.

Several people have asked what can be done to help. The biggest thing we need right now is prayer. However, if you want to do more, blood and platelets are always needed. If you live in the Savannah area, both Catie and John Michael have accounts set up at the Savannah Community Blood Bank. When you donate in their name they get a credit. You don't have to match their type or anything, but it helps folks who need blood and sometimes offers monetary assistance to the person whose name you donate in. I'm not sure how it works, but that is one thing you can do. If you don't live in the Savannah area just donate at your local American Red Cross or other blood bank in your area. Blood and platelets are always in high demand and can only come from your generous donations. Donations are always down in the summertime.

Someone asked in the last couple of weeks about financial gifts. Any of the organizations listed at the top of the web page are excellent candidates for donation. (There are a couple at the bottom as well.) They focus on different things and I have tried to include descriptions of each with the link provided. We have benefitted from all of the organizations listed in some shape, form, or fashion. Some of the organizations have ministered to our spirit, introduced us to other families and brain tumor survivors while others focus on research. All are amazing, but CureSearch is especially important. It's focus is on reaching the day when any child diagnosed with cancer can be guaranteed a cure. For us, that's number one b/c then we wouldn't need all of the other organizations that have come to mean so much to us. I believe that most of the organizations take donations in memory/honor of people, so it's a great way to honor people you care about.

Catie and Tre' are napping, so I'm going to try to get some things done. Hopefully we have nothing medical (other than therapies that we'll be starting back this week) until Friday. We have a Savannah clinic visit for labs and chemo then. It will be good to see all our Savannah folks as we sure have missed them over the last couple of weeks.

Hugs,
Jenny

Saturday, July 23, 2005 3:30 AM

It's one of those change diapers every 2 hours nights and I couldn't go right back to sleep after the last one. Catie is doing well. We FINALLY got to start chemo around 11:00 last night. For some reason it took forever for her urine to get to the right point. We hung out at the clinic until around 4:00 and then came on over to the hospital. She got fluids all that time, but we think it must have just taken longer b/c she couldn't eat/drink the night before b/c of being sedated this morning. She got 2 boluses (big time fluids) and then for some reason needed lasiks to tee tee. She's never needed it before chemo, usually only after. Her body is holding some fluid from the steroids (still celebrating the fact that we're done with those!!!!!), so the lasiks were nice! Everything has been pretty routine since then.

We don't know our plan, but we do know our options. Dr. Claire said that the least aggressive (simply finishing our current plan) and most aggressive (radiation) options aren't ones we're really considering. The options in between (from least to most aggressive) are 1. Accutane, 2. combining the 4 drugs she's been getting together and getting them all at once in 5 day hospital stays (we have been doing 2 one month, 2 the next), 3. a single stem cell transplant, 4. a triple stem cell transplant (3 of them back to back ending up with a great deal more chemo than just a single transplant but not equivalent to 3 single tranplants). I'm not sure if a double transplant is an option as well or not. I'm a little uncomfortable w/ the Accutane as I worry it's not strong enough. So I guess I'm kind of hoping for 2, 3, or 4 though the thought of a triple transplant is kind of intimidating. The thing I do like about the transplant options is that the cancer would see some new drugs that are known to work against medulloblastoma. Our time frame goes from 2 months (meaning we'd finish at our original time -- is that crazy or what?) for a single transplant to around 6 months for the rest of the options. Her bone marrow is still fairly strong in that she has not required transfusions (only 1 b/c of chemo) but it is weaker than when we started b/c she's been on treatment for 22 months. I would expect her to need more transfusions with any of our options (excluding the Accutane).

The position that we're in is hard because there is NO literature for where we're at, that's right, zippo. Going back 20 years in the literature (I think I'm saying this right) Dr. Claire found VERY few cases of doing a 2nd look surgery on medulloblastoma patients. It's the first time she's ever had one of her medullo patients have a 2nd look surgery. Knowing all of this makes me so very, very thankful that we went back in. Not going in and just waiting could have been devastating for Catie. The cancer would have grown and getting it back under control could have been very difficult. Now that I appreciate how rarely this is done, I am so thankful and I know this was an answer to prayer.

So that's what we know. We will know what we're doing before our next treatment. Dr. Claire continues to consult with other docs around the nation. Please continue to pray for her and for the doctors she has or will speak to. Please pray for Catie. Her body is weaker than normal going into a treatment b/c of surgery 2 weeks ago. There is a slight increase of infection b/c of the incision opening earlier this week. (I don't think I wrote about that. The day after her stitches came out, a scab came off the top of her incision. This part was open while the rest was closed, so it required 3 staples (let me tell you, that was fun) to close it back.) The risk is not great, but it doesn't take a genius to figure out that we don't need any kind of infection right now. We'll probably be doing neupogen (which Catie will NOT be thrilled with)
b/c of this.

Also, pray for her spirit. The last 2 weeks have been rough. Her world has been turned upside down and she's missing her house. Pray that her spirit will remain strong and joyful. I know that coming off the steroids will help, but do pray for her healing in this area as well as physically.

Lastly, there are so many other children who are fighting so hard. The
floor has several new patients right now and those first weeks are so very hard. Please pray for them and their families.

Well, I can certainly be long-winded in the middle of the night! Hope I can make sense at the same time. We head home tomorrow (that's the plan anyway). Thank you so much for your prayers and encouragement. You really are carrying us right now with both.
Love,
Jenny

Friday, July 22, 2005 1:30 PM CDT
Today started out as "one of those days" as Catie was starving and was NPO (couldn't eat) due to sedation for the LP (spinal tap). She woke up at 3:00 wanting a bottle and proceeded to pitch a good ole fit at that lovely hour. It has to be confusing when we're always pushing her to drink more and then all of a sudden we're telling her she can't have anything. I told her we'd have to wait until Dr. Claire said we could have something to drink so for 5 minutes she screamed that she wanted to go see Dr. Claire. She finally went back to sleep a little later.

This morning we headed over to the clinic for the LP and beginning hydration. I let Dr. Claire know that there had been a small amount of fluid that had leaked from her incision overnight (about the size of a half doller). That earned us a ticket straight to CT. I felt horrible b/c I had promised Catie her Mac-N-Cheese (which she was starving for at this point b/c of the steroids) as soon as we finished in the "star room" (the sedation room). So we left the "star room" and headed to CT instead of for food. It made for an upset Catie but was very necessary. Leaking fluid could have indicated hydrocephalus which would make an LP extremely dangerous. So... the CT looked good and we had the LP done. The fluid looked clear and that's good. We'll wait on the results to let us know that all cells there are good cells. Catie awoke from sedation happy that her Mac-N-Cheese was ready and we headed back to the clinic to find out if we could do chemo today or not. The fluid leaking was of a little concern and Dr. Claire wanted to consult with neurosurgery to be sure we were good to go. Luckily we were, so Catie's been getting fluids and just woke up from a good nap. We'll start chemo soon and head to the floor as soon as there is a room. Hopefully we'll be headed home by lunch tomorrow.

I know that's a long entry w/o a lot of info. but that works, b/c the morning felt long. I have to say, though, that Scottish Rite is amazing. The way that they came up w/ a quick plan B and streamlined the process to ease the day of one hungry little girl and her family was amazing. I was absolutely impressed with how they made it all happen so easily, so quickly, and with such compassion.

Currently Catie is chowing down on Doritos and Mac-N-Cheese (that she insists needs to be warmer). She wants to paint but we've made a deal that she has to use her walker to get to go paint. Right now she's holding out, but I think she'll give in soon.

I've only talked briefly w/ Dr. Claire so far. She said that everyone at tumor board was agreed that we should avoid radiation. That is HUGE!!!!! I really expected some disagreement on that so we are so thankful to see God's guidance. Please pray that He continues to grant wisdom to all involved in Catie's case. I'll update more later.
Love to all,
Jenny

Thursday, July 21, 2005 12:47 AM CDT

Quick update as we wait for Catie's audiology exam.

A big thanks to Kim for updating for us. I know lots of folks were praying and waiting for news and we have no connection right now. Thank you so much for your words of encouragement and your prayers. I was wiping the tears from my eyes in the middle of this busy waiting room b/c of your amazing care for our daughter and our family.

We are doing ok, anxious to know "a plan," but aware that it may be a little bit before we have one. The plan right now is to do an LP in the morning to be sure there are no cells in her spinal fluid. We don't think that there are (please pray that there are not) but we have to check to be sure. We'll then start fluids for the next round of chemo Catie was due for. The thinking is that this chemo was effective in keeping the cancer at bay but wasn't strong enough to kill it all. So we'll do this round to give us time to make decisions. We're in an unusual spot. Catie is the only medullo patient Dr. Claire has ever done a 2nd look surgery on. It's not a common thing. We're also not in a common place b/c we're hoping to avoid the radiation. So, it's not an easy case. We are praying for wisdom for Dr. Claire and the doctors she's consulting with and for clarity. The right decision has always been apparent on this journey and we pray this continues.

Please continue to pray, harder than ever. We so value your prayers and support. Catie has been doing better, seems a little tired today, but overall is improving. We'll update again tomorrow.
Love to all,
Jenny

Wednesday, July 20, 2005 7:50 AM CDT

Hi Friends,

This is Kim Booth updating for Jenny and Tre'. The computer is down at Ronald McDonald House so I am "filling in." Bear with me!

(Jen, sorry I did not do this last night...I'll explain later.)

Pathology is back and unfortunately, it is active cancer:(. NOT relapse, not even progression, just residual disease that has not gone away after all these 22? months of treatment. We are so thankful that Catie is still in a place where something can be done about it.

Of course Jen and Tre' are disappointed, but there are options...good options for Miss Catie. Right now Dr. Claire is discussing Catie's situation with pediatric oncologists across the nation to select the best plan for Catie. Dr. Claire will hash it all out with them and bring it to Jenny and Tre'. Jen shared with me that she (Jen) thinks a autologous stem cell transplant is likely. (Autologous is when you donate to yourself, so there are no rejection issues.) Basically, this is just a much bigger chemo than Catie has ever had to finally finish off this little bit of stubborn tumor that has gotten so darn comfy in Little Catie's adorable head. But the final decision has not yet been made.

We pray for clarity and wisdom for these many, many smart people to decide on a treatment that will finally rid Catie's body of all disease.

Also, Jen said that they have decided to get a walker for Catie...temporarily...just so she won't be so frustrated and can be more independent while she is regaining her balance and strength.

Hope this made sense, Jenny just wanted all of you prayer warriors out there to know what's happening as soon as possible.

Love,
Kim Booth (Chandler's mom)

Sunday, July 17, 2005 8:54 PM CDT

Today was MUCH BETTER than yesterday! Catie is still eating WAY more than normal but by 11:00 or so this morning, she seemed to find a little bit of equilibrium mood-wise. There were still tearful moments, but they were far, far fewer than yesterday. She also played more today than she has been. She still spent a good deal of time on the couch, but she played with her kitchen set for at least an hour (standing/leaning against the couch) and really enjoyed it. She was pretending and imagining like she did before the surgery and that was good to see. She also let me be more than 5 feet from her today and even went down for bed in her normal routine (snuggled up to Daddy) without me there. I expect we will continue to see improvements tomorrow and then we drop to steroids just once a day on Tuesday. WooHoo!!!!!

I have tried to find time to process all that has happened in the last 10 days, but it just hasn't been there. There have been such highs and lows and I feel sure the roller coaster ride isn't over yet. I remember early on in our journey learning an important lesson for this walk through childhood cancer. For me, I have to try not to go too high with the good stuff and try not to get too low with the bad stuff. If you do, you can really throw yourself for a loop. You kind of have to find a middle road to stay on and try to keep your even keel as much as possible-- at least that's what I try to do. I'm not always successful, but it helps me.

The outpouring of love and support for Catie and our family has been truly tremendous. From a waiting room full of people to wait with us to the AMAZING support of other cancer moms (you guys are the best, you know) to food provided for us to cards and messages in the guestbook to hundreds of prayers to feeding our animals and getting our mail to answering your phone when we've needed an ear to the tremendous staff at our hospitals to sharing hard news with our family and friends so that we had time to absorb the news ourselves... I would try to name names, but I know I would leave someone out. Please just know what an amazing impact you have had on our family.

As far as pathology, we may know something tomorrow, we may not... Trying to stay on that even keel. You know we'll post as soon as we know anything. I know some of you are probably wondering how Catie's getting around. Well, thus far she still hasn't shown a lot of interest. I did get her to hold my hand and walk from the couch to the kitchen table today. She didn't have her shoes and braces on, but did ok. She definitely needs the support but it seems to be a balance thing not a strength thing. This is not surprising at all after this surgery. She and I talked a little about it today and she recognizes that it is harder to get around. I told her that tomorrow we're going to put her shoes on and let her hold my hand a walk a little more than we've been walking. I'm no PT, but I'm thinking a walker may be helpful (Stephanie, I'll get with you when we get back from this trip to Atlanta). Dr. Claire wants to evaulate her before we made a decision like that to be sure she's steady enough to be safe when using one. And who knows, once she gets up a little more, she may be steadier than I think she's going to be. When we talked today, we talked about how she might need something that can help her get around for a little while. She seems to have a good attitude about it and isn't frustrated yet. I hope that's the case when she's feeling better and wants to be moving more. When I was helping her to the table today, she misstepped and had a big wobble and said, "Whoaa!!" and started laughing. I'm thankful she can laugh instead of being frustrated.

The dishwasher is running and I should really clean the floors and start the washing machine, but I think I'm off to read a good book while it's quiet... Hope you find something to enjoy tonight to.

Love,
Jenny

Saturday, July 16, 2005 10:08 PM CDT

I've got to admit that we're tired tonight. I think the steroids on top of recovering from surgery on top of her whole world being turned upside down has taken it's toll on Catie. I have a new appreciation for all you leukemia folks who have to do steroids on a regular basis!! She's starving constantly and then is miserable b/c she's eaten so much. She's grumpy and doesn't know what she wants. I know that it's mainly the meds causing all this, so I'm very glad we stepped down on the steroids again tonight. Now we're down to 1/2 mg every 12 hours. Anybody know if that will help the symptoms subside any?

She actually painted for about 10 minutes today. This is a big deal b/c she hasn't "done" much of anything yet. She's usually either laying or sitting on the couch or sitting in her booster seat to chow down. I did get her on the floor for a few minutes this afternoon as well. She's been able to take a bath the last couple of days, we're just careful to keep her incision dry. She doesn't like her baths right now and begs me not to touch her owie. I promise her that I won't and remind her how careful I've been not to touch in her sponge baths, but for some reason she's still seems worried no matter how much I reassure her. She insists that it doesn't hurt, but I think she's worried that it will if I touch it.

All that said, we're still doing volumes better than the last go round!!!!! We were still in pretty serious shape at this time last time. I'm so thankful that even though it's been a rough week, it's been so very much easier than last time.

Still no news on pathology. I have to call Dr. Mazewski's office on Monday to see if we need to take a change of clothes (in case we're doing chemo). We'll leave Tuesday morning and I'm not sure when we'll be back. All that is hinging on pathology and the decisions that are waiting to be made. Please pray for good news and for wisdom as we make decisions. Pray for Catie to feel more like herself and to feel more in control. I have no idea how she feels and that is so hard, b/c I don't know the best way to comfort her.

Sorry to those who I owe e-mails, thank you notes, or return phone calls to. I caught up a little last night, but didn't get to as much as I wanted to today.

Hugs to all and thanks so much for checking in,
Jenny

P.S. Please keep Maddy's family in your prayers. Today would have been her 2nd birthday and I can't begin to imagine how much they miss her. Love you guys -- we're praying for you.

Thursday, July 14, 2005 10:35 PM CDT

Hello from HOME!!!!! Yes, we are home sweet home... Catie is sleeping soundly, it is very DARK outside (unlike Hotlanta), the crickets and frogs are singing loudly, and it is so good to be here.

We went in to the clinic today and Dr. Claire decided we should give Catie a little hydration before we made the trek home. I'm glad b/c it made us have to put less pressure on her about drinking enough. Last night, she finally asked to go to the doctor b/c we kept trying to get her to drink. She figured it would be easier to go get drinks in her port. =) She's drinking well tonight (and eating us out of house and home).

There is so very much to write tonight... so many feelings, so many things to be thankful for... but I must admit that my eyelids are drooping in a serious way. We've been getting up a few times during the night to give meds and I think the sleep interruptions are catching up with me. So tonight will be brief, but I wanted to share a couple of things... I will add much more later, but for tonight, here goes...

Driving home today we were approaching more rain storms. I had been watching Catie and was a little concerned b/c one of her eyelids seemed to be drooping a little more than the other. Once your the parent of a brain tumor kid, you're constantly watching for any signs of something going on in the brain. It's a curse, and I have to admit it can drive you crazy if you're not careful. So I'm looking at her eyelid wondering if I need to worry, reminding myself that's she's very tired, she's just had surgery, I'm looking at her at a funky angle... trying to talk myself out of worrying when I look up and, wouldn't you know it... there's a rainbow (Thanks Hayley!)!!! A reminder of God's promises. I decided to watch the rainbow instead of her eyelid for a while!

We turned onto our road tonight and Catie started saying, "yea! yea!" She was so glad to be home, and once we walked through the door we saw more bits of our Catie that we haven't seen a lot of this week. She was chatty and sat in her booster chair to eat (instead of in a lap or lying down), she took 5-6 steps holding her daddy's hand. She definitely needs the support of a hand, but she is SOOOOO much steadier!!!! This is a huge difference from last time and a big answer to prayer. I know we did the right thing by staying in Atlanta for a few days, but I also know that we did the right thing by coming home today. Home is healing and the evidence of that beginning could be seen as soon as we walked in the doors!

I would have been so thankful if we were just getting discharged from the hospital today. To be honest, we weren't counting on getting out until the weekend. So when Hudgins said we could leave last weekend, we were utterly SHOCKED!! To be HOME tonight is amazing and truly, it's an answer to all the prayers that all of you have been saying. Thank you so much for your prayers. We are grateful for all that we are seeing being done in Catie's life.

Much more to share, but it will wait for another night. Thank you so much for continuing to pray. We're still waiting on those pathology results!
Love to all,
Tre', Jenny, and especially Catie

P.S. Diane, thanks so much for the Potato Head!! Catie loves it and it's great occupational therapy for her! I hate we missed you but thanks so much for thinking of us!

Wednesday, July 13, 2005 8:10 PM CDT

Hi guys! We're at the Ronald McDonald House! We got discharged midafternoon and headed here to make some cookies. Of course, Catie's idea of making cookies was eating the cookie dough, but we still managed to get a batch made. She was awake much of the day and was content to sit in the bed propped up on pillows rather than lying down the whole time. If I tried to lay her down to rest, she would ask me to help her sit back up. We got some smiles and giggles today too, which is VERY nice!!!!! She's still very clingy, but that's certainly understandable.

We are to see Dr. Claire in the morning and we're hoping she gives us the ok to come on home for the weekend. Of course, she's going to have to drink better than she has tonight, so we're working on that. I think she was just to tired to drink after being up so much today. She has eaten a ton today as the steroids are in full force! We step down on them again tonight, but will probably be on them at some level through next week. I cannot believe how much she is eating -- her little tummy is tight as a tick. Her face has that moonface look as well.

We'll be back here on Mon. or Tues. as we have an appt. w/ Hudgins on Tues. and I'm hoping Catie has recovered enough to start chemo back. We still don't know what treatment we will be doing, so we may not be starting next week, but I'm hoping we go ahead and get cracking! This will be the longest stretch she's been without chemo.

That's all for tonight. We're pretty tired and we need to start gathering our stuff in hopes of heading south and east tomorrow. Please continue to pray, we're still waiting on those pathology results and so much is riding on them.

I'm behind on responding to e-mails and will try to catch up soon. Just know I'm not ignoring you, I'm just behind.

Love to you all, and thanks so very, very much for caring about Catie and our family!
Tre', Jenny, and especially Catie

P.S. We learned today that Catie's picture is going to be used on billboards around Atlanta for RMcD House! Kinda cool, huh?

Wednesday, July 13, 2005 9:00

Just a quick morning update. She tee teed (actually a ton) overnight, so that's good. We also let her tylenol/motrin run out to see if she would spike a temp, and SHE DIDN'T! Still on the puny side. Getting fluids though!
Love to all,
JEnny

Tuesday, July 12, 2005 9:00
Hello from room 321! Yep, you got it, we're back in. We went to CT around 10:00 this morning and then spent the remainder of the day in the clinic. Her CT looked perfectly normal for this stage of the game after surgery. She's still just really puny and Dr. Claire wants to be sure we've covered our bases. The ran a bunch of labwork and it all looked pretty good. Her white count is still a little low and her sugar was a little high, but there weren't any major red flags. So we got fluids. She wouldn't go teetee all day so they had to cath her (just a quick one to get a urine sample-- she doesn't have it now). They want to be sure she doesn't have a urinary tract infection since she had a catheter on Thursday. She didn't perk up after all the fluids, so Dr. Claire decided to go ahead and admit her and give her fluids just to be on the safe side. She sleeping soundly now.

Please pray that if there is something wrong other than just the normal post-op blahs that they will find it quickly and that it will be easily treatable. Pray that there is now infection anywhere. They're pretty sure it's just normal post-op stuff, but boy will I feel better when she perks up!

Thanks so much for all of your messages! We check them often and they are so encouraging. Your prayers really make a difference.
We'll post if anything new comes up.
Love to all,
Jenny


Tuesday, July 12, 2005 1:00 PM
Hi guys! Just a quick update to let you know we're at the clinic. Catie had a CT this morning and it looked normal for a post-op scan. This is GREAT news as it means that her body is handling fluid and there didn't appear to be any other issues. So... we're hoping that Catie being lethargic is just coming from surgery (it WAS only 5 days ago). I have asked how we would know if she had an infection in her brain or in her CSF b/c we wouldn't see fever since she's getting the tylenol/advil every 3 hours. We'll talk with Dr. Claire about that when we see her shortly.

We'll update again later!
Love to all,
Jenny

Monday, July 11, 2005 8:03 PM CDT
Hi all! We are still at the Ronald McDonald House and doing well.

We went to see Dr. Claire this morning just to let her check Catie over. I think with all that happened last time, we're a little on edge about all that can happen after a surgery like this. Catie was still pretty lethargic. She said nothing hurt but seemed to want to be lying down under her covers the whole time. To be honest, we don't know what to expect with recovery, so we thought it best to check in w/ Dr. Claire. I told her what we were doing w/ meds and that I wasn't sure if Catie really wasn't hurting or if she just didn't want to take any more meds by mouth. She asked what Catie was taking and when we told her about the steroid being 4 tsp. (20 ml) she told us that there was a more concentrated dose that would allow Catie to get what she needed w/ only 2 ml!!!!! She was not surprised that Catie didn't want to take more meds by mouth with all that she had been taking. Dr. Claire got down on Catie's level and told her that we weren't going to make her take any medicine by mouth, but that if she was hurting we needed to know so we could give her meds in her port to make her feel better. At first Catie said she didn't hurt, but when Dr. Claire assured her again that she wouldn't have to get any meds in her mouth, she confessed that it hurt. Dr. Claire asked if it hurt a little or a lot and Catie said a lot. So Danielle accessed her and they gave her some Demerol (sp?). I felt so bad that we had been backing off pain meds when she was hurting. She is usually straight w/ me about pain and she just kept saying she wasn't hurting. Dr. Claire said she's seen kids do that before, but she was surprised that Catie was willing to endure pain to avoid meds at such a young age. Poor thing. Dr. Claire felt like the meds she got in the clinic would be enough to get ahead of the pain and now we're doing tylenol/motrin every 3 hours again. We're going to the clinic tomorrow afternoon for another check. If Catie is lethargic in the morning or if at any point she seems worse then we will call in the morning and they'll do a CT scan. They're not suspicious of anything, they just like to be sure they're not missing anything. If she's still dragging we'll stick around for another check on Wed. Dr. Hudgins wants to see Catie next Tuesday, not tomorrow, so we'll see him then.

The pain meds from the clinic made Catie pretty sleepy, so she took a good nap. She was really dragging through dinner but ate EXTREMELY well (those steroids have officially kicked in). After dinner we pulled a surprise out of her bag from Mamanon and crew and she opened it. It was the glow in the dark necklaces. We may buy a truckload of them b/c she really perked up. She used it as a sword to "get" us and we saw Catie coming through. We came back down stairs and she felt well enough to use foam stickers to make a doorknob hanger. It's definitely the most energy we've seen. She got tired pretty quickly after that, so we went on up to bed (after some chicken noodle soup w/ croutons in it). She's sleeping now. I'm hoping that burst of energy means we're rounding the corner and she'll continue improving.

Dr. Claire did not have pathology reports back yet, but said she expects them before the end of the week. She did have a chance to talk to Dr. Hudgins. He said that the first chunk he pulled out did not look suspicious (and preliminary pathology reports confirmed that). This chunk is what was showing up on scans. Behind that he saw some tissue that was colored differently and looked abnormal to him. So he started scraping it out. There was much less of this tissue, but this is what preliminary reports say is medullo. The final results will give us what we really need to know. Please pray that the final path results bring good news. Catie's original tumor was the least aggressive form of medullo.

Hope you all in the south haven't washed away from Dennis!! We got a lot of rain here today, but it was clearing out by evening. Maybe we'll see some sunshine tomorrow. Who knows, maybe we'll get to head home tomorrow or Wednesday!!

Please continue to pray for Catie and for all of the others battling so hard. Sometimes the magnitude of this disease and the number of children who have it is simply overwhelming.

Love to all,
Jenny

Sunday, July 10, 2005 7:07 PM CDT

Hi all! We are at the RMcD House watching the rain. Catie had a good night and a good day. She's just still really, really puny. She is drinking and eating well for the most part. We did get two small giggles this morning (thanks to putting butter on our noses -- Aunt Nik Nik would be proud), but haven't had any smiles since then. She just feels yucky. Her neuro signs seem good though and she will stay awake some. She sleeps a good bit, but I think it's just her body recovering from such a major surgery.

We will schedule her Tuesday appt. w/ Dr. Hudgins in the morning and we may see if Dr. Claire can just eyeball her tomorrow if she's still acting puny.

Nothing much more to report. Still praying for those pathology reports!

Love to all,
Jenny

Saturday, July 9, 2005 Evening

Well, we made it to the RMcD House and I think we're going to stick around here until Catie's appt. with Dr. Hudgins on Tuesday. No use driving there and back when she's feeling like she does and we hadn't planned to be home yet anyway. Catie is VERY puny, but that's to be expected. She can sit on her own, and we've seen her get to her knees on her own. Her trunk control is much better than I expected at this point. She talks to us when she needs something (though sometimes she doesn't want it when you get it for her) and she answers our questions. She has been on the couch most of the afternoon, but has spent short periods of time sitting in one of our laps. On top of feeling just crummy, she's taking steroids to combat brain swelling. All you leukemia folks know how that is, and I must say I don't envy how often you have to do it. She has eaten some (half a piece of toast and nibbles of other things here and there) and she has guzzled about 15 oz., so we're doing well on that front. I'm surprised she's not eating more yet w/ the steroids, but w/ all the meds we've shoved in her mouth (she's had more than 10 tsp. of meds just in the last 7-8 hours) I imagine her tummy feels a little icky. We also had to teach her to swallow pills as the first steroid script that arrived was in pill form. So she's swallowed 2 pills today as well. Another first.

Please pray for wisdom as we care for her and for us to know if she's feeling bad enough to need other meds.

She's calling, bye.
Jenny


Saturday AM
WE'RE GETTING DISCHARGED!!!!!!! Yes, I'm serious, but I'll say it again just to be sure you got the message. WE'RE GETTING DISCHARGED!!!!! God has answered so many of our prayers. Keep those prayers going, they are truly making a difference.

I wish I had a picture of my face when Dr. Hudgins gave us the word a few moments ago. He asked Catie if she wanted to go home. She said, "mm hmm." He said she had to take her papi out and say it. So I pulled her papi and she said (and not in the nicest tone I might add), "I WANT TO GO HOME." And instead of saying, "well you have to eat and start drinking first" like I thought he would, he said, "OK." I just about passed out!!!! HOLY COW!!!!! He said we could come home, home if we want to, but we're going to the RMcD house for the night, b/c if she doesnt' start eating or drinking (all she's had since Wed. night is 1 peanut, 1 orange slice, and 2 small spoonfuls of melted popsicle) she has to come back. Then hopefully we'll be headed home tomorrow.

I'm a little nervous, b/c she is still very still, she hasn't even let me hold her yet b/c she's scared it will hurt. Holy cow! We're leaving.

Please continue to pray.
*Thanksgiving for the blessings we have received thus far. We are so grateful for each and every one.
*for her healing, both physically and emotionally from all that she has been through
*that no complications will arise and that she will eat and drink and be able to keep food down.
*for Catie's comfort
*that we will know the right things to do in caring for her and making her comfortable
*this is a biggie----- please pray for the pathology results of the tissue that was removed. That will be the final word on what we're dealing with. Pray that we receive good news on the final pathology that we're still waiting on.
*Pray for wisdom for Dr. Claire and all of the docs we know she will be consulting with regarding Catie's treatment. Pray for wisdom for Tre' and I as we take part in the decision making process.
*Pray for all of the other kids (and adults) battling this horrible disease. Right now Ethan (/ga/ethan) could really use your prayers.
*For the people of London

I'm off to put stuff in wagons to go home!!!!!

Love to all,
Jenny
P.S. The really funny thing is that Tre' doesn't even know yet. He took his dad to meet Aunt Frog in Macon so he could go home. He doesn't have his cell with him. Aunt Frog knows though, so she'll share the good news and we'll see him at RMcD HOuse soon!

Friday, July 8, 2005 10:10 PM

Hello from the 1st floor! We're out of PICU! We had a long talk with Dr. Claire. It was encouraging and we still have lots of options on the table. It will be a while before we have a plan. They're locking the computer room. I'll update mroe tomorrow!
Jenny

Friday, July 8, 2005 3:10 PM
Have you guys figured out how therapeutic this website is for me? I don't know why, but I usually feel better after coming here to right. Go figure.

Catie is starting to have more awake time. She has eaten 1 orange slice and had 2 spoonfuls of melted popsicle. This has stayed down thanks to the Zofran she's getting. When she's awake, she seems very aware of what's going on around her. She responds to questions and does little things that the nurses ask her to do (like squeeze their hand or push with her feet). No smiles yet, but that will come. She's feeling pretty crummy, but I did see a slight glimmer in her eyes one time this afternoon. She attempted to blow a bubble, and she has opened a couple of presents. Yesterday she was not interested at all in prizes or presents. It's good to see her progress, even it's small steps. Lots of small steps can take you a long way.

Her scan this morning looked great. There is a small amount of blood at the site, but nothing abnormal, and there is less to see than there has ever been on a scan. Maybe in a couple of weeks we'll get our first clear scan!!

There are so many thank yous to send around that right now, I don't even know where to start. Just know we're so appreciative to everyone for all you've done.

We'll probably update again after we talk to Dr. Claire tonight.

Love,
Jenny


Friday, July 8, 2005 9:45 AM
Just a quick note to let you know that Catie had a really good night -- much better than the 1st go round for any of you who heard the stories about the morphine crazed kid we had that go round. We were actually able to get a little rest. They're still checking vitals every hour and doing neuro checks pretty frequently as well. She's also getting pain meds by mouth (tyl. and motrin) every 2 hours so we weren't changing diapers all night (like on chemo nights) just giving meds. She doesn't like taking the meds, but she does it. That's the only thing she had in her mouth though. She's still not interested in popsicles, ice, or anything else. That will come though.

We're still waiting to see Hudgins this morning. I'm guessing he's waiting on the results of her post-op MRI. The back of her head is a little puffy, but nothing like the softball size sack of fluid we had last time. Her head is not leaking fluid, so that's really good is well. We will see how her ventricles looked when Hudgins comes by. That will let us know how her body is handling the CSF. Her platelets are on the low end of normal, which normally wouldn't be a big deal, but our nurse said it may be a bit of a concern since we definitely DO NOT want bleeding at the surgical site. We'll know more on that when we see Hudgins too. We'll update more if there is any news.

Keep praying,
Jenny


Thursday, July 7, 2005 8:54 PM CDT
Hi all. If you haven't read any of today's earlier updates, look back in journal history to know what's gone on so far.

Whew! What a day... and I must admit not the easiest day we've had. I have to start off by saying thank you. The support and love you have shown to our family has been overwhelming, both on the website, through cards and phone calls, and some with your presence here. We had quite the crowd (at least 30 people) in the ICU waiting room today. Your presence here made a huge difference for us and eased our journey. We know that many of you travelled long distances and made sacrifices to be here and we sure hope you know how much we love you. A special thanks to Camp Jack and the Manus family for the yummy lunch! It was delicious and fed an army of supporters.

Catie is in ICU and doing well. Her incision is doing well, her vitals look good, and she seems comfortable. Her tummy has been a little yucky and she's had a bit of a temp on and off, but this is all very normal. She is TALKING!!!!!!!!!! This eases my mind so much and it helps that she can tell us what she wants (or what she doesn't want which is more likely!). She is sleeping much of the time, but she is in there.

Thus far, she is doing much better than last time. She is not yet out of the woods, but we're hopeful for a better go than last time. Fluid issues usually present with in the first 2-3 days, so that's a huge prayer request.

The other biggie, obviously, is the fact that there were still cancer cells. Dr. Hudgins removed "stuff" that was about the size of a walnut and a half, bigger than we expected. Some was cancer, some was scar tissue. The pathologists will have all the slides ready for Dr. Claire and Dr. Hudgins to look at tomorrow. They will meet and have a "chat" about our girl. Dr. Claire assured us that there are many GOOD treatment options. She and Dr. Hudgins both still want to avoid radiation if possible b/c of the possibility of Gorlin's. Obviously, we will use it if need be, but we're hoping to still get by without it. I trust our doctors and feel confidant in their ability to guide our decision. Please pray that God will grant them wisdom and lead them in the right direction.

So... the bad news is the cancer is still there. The good news is it's not considered relapse or reoccurrence (sp?). They feel that what is there has been there all along based on scans and physical exams/neuro checks, etc.
What is there is old tumor that has been kept from growing by the chemo but hasn't been destroyed. It is good that it was responsive in the fact that it didn't grow through the chemo. Too often this kind of cancer does that. We need some stronger stuff though to get rid of it.

We don't know all of the treatment options. Dr. Claire keeps her pockets full of hope and options though and there are many possibilities. One is a stem-cell (or even tandem stem cell) transplant(s). We're not necessarily doing that, but it's on the table. We hope to know more tomorrow after the docs have their powwow.

Tomorrow we have an early start with a 6:00AM post-op MRI. We will also see Dr. Hudgins in the morning as he is definitely an early bird. We'll continue to keep you updated about what's going on. Just remember that no news is usually good news.

As to how we feel... I'm not sure. There are lots of feelings right now: worry, concern, thankfulness, peace... I know it sounds crazy to say you can feel worry and peace at the same time, but I really believe that you can. But Catie girl is here, she's doing well considering, she's talking, she tried to sit up (oops, forgot to tell you that), and we're in a good place now. We're in a heck of a lot better place than we would have been if we had finished chemo and then waited to see what happened, b/c then we'd be dealing with a whole different ball game.

Please do continue to hold Catie and all of us close in prayer. We're holding tight to Jer. 29:11 and remembering that God is with us each step of the way. Even better, He's gone ahead of us to make a way.

I'm going for some good snuggles, but first one more thing. Today, Lisa and I were in the room with Catie. Lisa was getting ready to leave and looked at me from across the bed and said, "Are you going to be ok?" I was opening my mouth to say, "yes" when I saw a little head on the bed nodding up and down. We thought she was sleeping, but she was listening and she was telling us that, "YES!" she is going to be ok. We're holding on to that too, and looking forward to seeing her doing more "bottom busters" in the ocean water soon!

Love to all,
Tre', Jenny, and especially Catie

P.S. Forgive any typos and grammar mistakes, I'm not proofing anything tonight.

Thursday, July 7, 2005 1:25 PM EDT

Update-- just saw her briefly and she's talking!!

Catie is in recovery and is doing well. She doesn't seem uncomfortable, the recovery nurse even said that she felt underused!! =)

The bad news now... It is still tumor. Please pray harder than ever. Pray for wisdom in the decisions that are waiting to be made. There are many options but man, we sure didn't want to have to make the decisions. Pray for no complications in the coming days and no infections as her white count is a little low. Pray for her comfort and her spirit and spunk. We still need that fighting spirit in a big way. Please just pray that God will provide a way to Catie's earthly healing.

love,
Jenny


11:45 AM
UPDATE

THE OR NURSE JUST CALLED AND SAID THAT EVERYTHING WAS GOING GOOD. NO NEED FOR A TRANSFUSION AT THIS TIME. WE EXPECT SURGERY TO LAST ABOUT ANOTHER 1.5 HOURS.

We've turned her over... Her MRI is probably close to being finished. We should be getting a call soon telling us they've started the surgery.

Dr. Hudgins seemed optimistic about her surgery. He feels that the setbacks will not be as significant as last time. He said there is a big difference between a little spot in a young child's head and a large tumor in a baby's head. There are no guarantees, but he is hoping she has very little setback. We should have preliminary pathology reports today. A frozen section will also be sent off. It will be looked at and "chopped up" and looked at to be sure to find any bad cells that might be hiding. He expects the surgery to last about 4 hours including the MRI, so I'm thinking that at the earliest she will be in recovery around 1:00.

Please continue to pray. Prayer has carried Catie and us so many times on this journey. I know that God is holding her (and us) in the palm of His hand. We are holding tight to His love and His faithfulness.

Thanks for all your messages and your love. We truly feel it. We'll probably update throughout the day. It helps pass the time.

Love,
Jenny

Wednesday, July 6 5:30 PM

Hi all!
We are here at the RMcD House. As always Carie welcomed us with open arms and is even throwing a few extra burgers on the grill.

Catie just walked up and asked me to tell you all to be sure to check out her glasses and that cute hat in the picture!

Pre-op went well, the accessed her to check her counts and do the type and cross in case she needs a blood transfusion tomorrow. Tre's blood is waiting in case she needs it.

We also had time to visit with Mary Faith, the WONDERFUL child-life specialist from 3 North at the hospital. She brought down her special doll (had a port and everything, just like Catie) and she also had a doll for Catie. We wrapped her head, "put" a catheter on the baby, gave it a peripheral IV... did all the things to the baby that Catie will have done tomorrow. We even had the stickers to check her heart and the blood pressure cuff and the oxygen mask that will be there. We talked with Catie about the owie on her head and about if it hurt what we would do. She seemed to take everything in stride and only seemed extra curious about the catheter and the mask as she hasn't had much experience with those. She seemed to enjoy the "doctor play" and I think she has the right amount of understanding for her age about what is going to happen tomorrow. Every once in a while she will tell someone, "I get owie on my head tomorrow." Then she goes on playing...

I thought I'd share some specifics about our concerns and what we are praying for.

1. Catie's safety before during and after the surgery... No complications or infections.
2. That Dr. Hudgins can find the spot and that he removes anything that needs to come out. That there be NO CANCER whatsoever and that all we have been seeing is just benign scar tissue.
3. That Catie not need a shunt or temporary drain-- that her brain can handle the drainage of her CSF properly.
4. That she will not have much, if any discomfort and that the pain meds (and all meds) are effective with few side effects.
5. That she can talk when she wakes up.
6. That she can walk, if not on her own, with a walker.
7. That she remains the strong, spirited happy person that she is right now. That she keeps her spunk and her personality.

I'm sure there is more, but I'm short on time, and these are the biggies. Thank you so much for your encouragement through words, prayer, messages, etc. Thanks to the many who have journeyed here to be with us. You have no idea how much your support means to us! We love you all and we'll update tomorrow.

"For I know the plans I have for you," says the Lord, "Plans to prosper and not to harm you, plans for a hope and a future.

Love to all,
Tre', Jenny, and especially Catie

Tuesday, July 5, 2005 9:47 PM

Hi all!

Why I am sitting here at the computer when I have not packed a single stitch of clothing for our departure (at 8:00 AM) I do NOT know!! The toys and meds are packed and the washing machine is still running so, hopefully everything will be together before too long.

We continue to be blown away by the love that so many have shown to Catie and our family. Your prayers are carrying us this week and we are so grateful. Your phone calls and offers to help mean so very much to us. So many of you have given to us in your own special way, and it really means a great deal to us. A special thanks to Ms. Jan and her hubby for the shine that's on our house today. A big thanks to Melinda (Catie's angel) and her buddies from Audrey's Umbrella for all you've done to make Catie feel special. To Mamanon's craft class and the Special Ministries class in Jesup a big thanks for the goodies and the prayers. And thanks to Erin for the CD, I plan to listen to it a lot over the next few days!

So tonight as we sleep in our own beds and get ready for this phase of Catie's journey, I thought I'd think a little about the GOOD that has come from her cancer. Granted there's been the bad.. but I don't want to go there tonight. There's something about facing all that we have that allows you to see blessings a little more clearly... sometimes the little things aren't so little anymore, they're quite significant. So here's to the little blessings we've been more aware of b/c of Catie's illness...

Catie's morning snuggles... She is not a morning person -- and I must admit she comes by it honest. Often our morning starts off with a good snuggle-fest on the couch. She is one good snuggler and it's the best way in the world to start the day.

Her kisses at the end of the day -- butterfly, eskimo, Catie and Daddy kisses. It ends w/ a big hug and an "I love you!" A great way to end the day!

Her teasing nature and good sense of humor. She really can be quite funny.

Her sweet voice and the way she says her words. I've said it before, I could listen to her talk all day.

The zerberts she blows on her daddy's tummy.

Her sure shot with a water gun (I'm telling you nurses -- look out when she starts feeling better after surgery!)

The amazing grace with which she has handled all that has been thrown her way. Granted, she's had her tantrums and she has her moments, but she has handled the hand she's been dealt with a maturity far beyond her years. I know that this is one of the "little" miracles God has given us along the way.

Jeremiah 29:11

The amazing friends we've met through the world of childhood cancer. Though we totally and completely wish we had met you at ChuckECheese or something instead of at the clinic or in the hospital, we're so thankful for the chance to know you. We think of you all so very often and whisper prayers for you each day.

The friends and family who have helped to carry us through this journey are nothing short of amazing. You have helped to lighten our load and carry the burden and you have truly been the hands and feet of Jesus to us. You will never know how much of a difference you have made in our lives.

Catie's determination to learn to walk and to try to keep up with other kids. Tonight I think she had her first official game of chase. She was mighty close to running and she was giggling with delight the entire time.

I could go on and on and on... This list doesn't even scratch the surface. That just means we get to add more in the days and weeks to come.

I'll try to update tomorrow night (so long as the computer is working at RMcD House) to share some specific prayer requests for the surgery.

Until then,
Jenny

Tuesday, July 5, 2005 Noon

Catie's had a cold for about 10 days. She's getting a cough now which isn't great with surgery scheduled day after tomorrow. Please pray that the cough subsides so that it isn't a concern during surgery and recovery. It isn't a tight sounding cough, but I'd rather it just be gone as it's easy for little coughs to turn into bigger issues when your're flat on your back.
Thanks!
Jenny

Monday, July 4 PM
Oh what a wonderful weekend we had!! It was full of fun, family, food, and friends! We headed for Tybee after clinic on Friday. We knew the weekend was off to a great start when Catie's counts were high enough to stop shots Friday! We played in the sand and in the water and in the kiddie pool. We stamped cards and we ate and we just had a generally good time. Something about the beach makes everything cancer feel far away, and that's just what we needed this weekend.

Catie loves the water. She is not afraid of it, doesn't mind it in her face, doesn't mind going under, would live in it if we let her... She had fun chasing and catching hermit crabs, digging her toes in the sand, "swimming," hunting shells... I love the wonder of a child and there are few places better to enjoy that than at the beach. Tybee is wonderful at low tide. There is a HUGE area of tidal pools ideal for young children. They can play and run and crawl in the water. And the parents can relax in the cool water that is about a foot and a half to two feet deep. It is the ideal setting for a fun afternoon at the beach. Last night we enjoyed the fireworks show at Tybee. Catie liked this as well, and the big booms didn't bother her one bit. She tried her hand at a sparkler and liked that as well.

I awoke this morning with the immediate thought that this week had arrived... this week with all it brings with it. Thank you so much for your prayers and for the words of encouragement you've offered us here on the website, in cards and letters, and in phone calls or in person. You have no idea how much your support means. It reminds us how many people are in Catie's corner and, more importantly, how many of you are praying for her.

Tomorrow will be a busy day. I will see a couple of my kids for work and will begin getting us ready to leave. I have done NOTHING to get ready so far, so I know that I'll have no problem staying busy. Hopefully I can get it done during the day and we can enjoy the evening together tomorrow night. We will leave early Wed. and go to day surgery for pre-op labs and exams and stuff. Then we'll have the afternoon/evening to ourselves before our early morning wake up call on Thursday. Please continue to pray for Catie and for all the other kids in this battle. Chandler (/ga/chandlerbooth) has scans tomorrow, Kendrie (ga/kendrie) finally got to go home but still send some good wishes her way, Ethan (/ga/ethan) as he begins his battle against relapse, Victoria (ga/victorianewsome) has a new suspicious spot on her spine (she has the same thing as Catie), and John Michael (/ga/johnmichael) as he continue to recover from his BMT. There are so many others, but these kids came to mind quickly.

I'll update again before surgery to let you know about some specific concerns that we have. Thanks for caring so much about our girl and for checking in on us!
Love,
A tired, water-logged, but happy, Wilkins Crew

Wednesday, June 29, 2005 4:15 PM CDT

Catie continues to do well and kep us all on our toes. She is such a little talker and I love it when she chats with us. I sometimes hear bits of myself in her, the way she pauses at a certain point in a phrase, or the way she says, "OK." I could just talk with her all day long.

I must admit that the waiting is beginning to wear on us. I have been able to avoid the icky feeling of dread in my stomach until today. But, today it seemed like reality started setting in. I guess it's b/c one week from today we will be at the Ronald McDonald House, listening to Catie chatter with her buddy Chandler, watching her WALK and play and just be herself. We will be praying that the next day at the same time, we are crying tears of joy b/c there is no cancer found. We will be praying that we do not "lose Catie" for a few weeks as we did last time. Granted, she was always there and present with us, but she was VERY MUCH not herself for what seemed so long.

I know that we are doing the right thing. I know that God has gone there ahead of us. I know that we are in a good position to be able to go in and find out what's there and to have the chance to get ahead of it if it is cancer (which we pray it's not). I know that she can recover from deficits that may be there when she wakes up. I know that we are lucky she is here with us as far too many families wish their kids were here to be operated on... But still... I hate that we have to do it. Kim O., John Michael's mom, ( who is an truly amazing mom who has given so much) and I were talking about how you can have a peace, a peace that can only come from God and through the prayers of His people, but still have that sick feeling in your stomach and still hate all that your child has to go through. I guess that's where we are. I know this is right. All of her doctors agree it's right, but I can still dread it and I can still wish we didn't have to do it.

Please continue to pray for us as we wait and as the day draws nearer. I honestly do not know if I want time to go quickly so the wait is over or slowly so that we can just enjoy ourselves... No matter what I want though, it's coming... Keep praying...

Ethan continues to need your prayers as decisions are made on how to battle his relapse. He just completed his stem cell transplants and had his port removed only last week. Please stop by his site and offer his family the encouragement and prayers that they need so much right now.


Love to all,
Jenny

Tuesday, June 28, 2005 7:09 AM CDT

Hi all! Hope this finds you doing well. We have been staying pretty busy and the time is passing pretty quickly. We're getting the shots done each day... definitely NOT something we look forward to, but they're getting done and we're loving the Disney Princess Band-Aids!
Catie's white count is already up a good bit (from 0.8 to 3. something), so that's good! Now if we could just get those neutrophils going to boost that ANC on up. It's hanging out around 550 which is GREAT for this point in her cycle, but we need it up a good bit before next week. It should be just right by surgery time.

This is going to be a quick entry as Catie just woke up. But I wanted to let you know about a couple of other kids first.

Kendrie has been feeling generally crummy for a while and earned her own personal room on the AFLAC floor of the hospital! They hope to be headed home today.

John Michael is scheduled to be discharged to the hotel today following his incredible battle through his BMT. We are so thankful for answered prayers and that he is doing so well.

My heart is heavy with the news that Ethan has new areas disease. He just completed his stem cell transplant and had his port removed only last week. Please stop by his site and offer his family the encouragement and prayers that they need so much right now.

Off to play with my girl! Keep praying.
We'll post more soon!
Love,
Jenny

Thursday, June 23, 2005 7:05 AM CDT

Hi all!

We head in today for chemo (just vincristine) and counts. Then we get to come home and start the shots! I hope this doesn't make Catie as skittish about all things medical like last time when she began to dislike fingersticks and port accesses (which she had been handling w/o even a flinch).

We have done a fairly decent job (if I do say so myself) not dwelling on Catie's upcoming surgery. I know your prayers have been a huge help in that area. Granted, it does hang out in the back of our mind, but we've been living it up and enjoying summer things. Catie's gotten comfortable in the pool with her life jacket and swimmies. She's learning to kick really well and likes to "jump" off the side into the pool. She's excited today b/c her Nana (my mom) is coming to visit.

I have to admit, getting the date for surgery made everything a bit more real. It's 2 weeks from today... When I gaze at the large scar on the back of her head (that I've grown to love b/c it's her survivor mark of sort) I'm not real excited about the thought of it being stitched back together with staples once again. Lots of memories come flooding back, so I think through them and then - just like Dr. Claire said when we talked - close the door on them (but not without saying a little prayer first). We keep playing, cleaning, laughing... whatever we were doing.

We went out and bought the latest Amy Grant CD after going to the concert a couple of weeks ago. We love the whole CD (Catie's favorite is an old fave of mine, "Turn Your Eyes Upon Jesus"), but there's one in particular that really speaks to me right now as we wait. It's called "Carry You."
I'll include the words at the end of this entry, but first I wanted to share a conversation I had with Catie yesterday.

I was humming "Carry You," and Catie started singing it.
ME: Lay down your burden
CATIE: I will carry you
ME: I will
CATIE: carry you
ME: My child
CATIE: my child...
ME: Do you know who this song is about? It means when things are hard or scary or sad that Jesus will carry us.
CATIE: (singing) I will carry you
ME: Who will cary us Catie?
CATIE: (with a grin) Jesus
Me: That's right baby, that's exacly right...

I love that she's beginning to understand so much and I love how kids are so accepting of God -- no questions and doubts to wrestle with...

Love to you all,
Jenny

"Carry You"
CHORUS--Lay down your burden; I will carry you; I will carry you my child, my child; Lay down your burden; I will carry you; I will carry you my child, my child;

'Cause I can walk on water; Calm a restless see; I've done a thousand things you've never done; And I'm weary watching; while you struggle on your own; Call my name, I'll come;

CHORUS

I give vision to the blind (that's your line John Michael O.); I can raise the dead; I've seen the darker side of hell; and I've returned; I've seen those sleepless nights; And count every tear you cry; Some lessons hurt to learn

CHORUS

Tuesday, June 21, 2005 8:10 AM

We have a date... Catie's surgery will be at 8:30 on Thursday, July 7. We'll report super early as the surgery will be MRI guided. Prior to surgery that morning Catie will have an MRI with markers placed on her head to give Dr. Hudgins a map to follow during surgery. We'll go up the day before for pre-op.



Sunday PM
What is about the beach that relaxes you so and allows you to leave your worries behind (or at least push them out of your mind from time to time)? I don't know if it's the smell of the ocean or the sound of the waves or the sun or just the sight of something so much bigger than yourself... But I know that I love it.

We had a grand time at Tybee. Catie had a blast playing in the water and the sand and catching hermit crabs at low tide. She enjoyed playing with her buddy Emma (and we had fun with Emma's mom and Dad). It was just a great weekend all the way around. Catie was tired some of the time, but really, you couldn't tell that she just had chemo a few days ago. This afternoon we went back to the beach one last time after her nap. The tide was coming in and the waves were really rolling. I didn't think she would like the water with all the waves as the ocean had been rather tame the other times we went out. Boy was I wrong! She loved the waves. We held her hand tight and let her stand in them. She squealed with delight and laughed when one would crash hard enough to splash her face. What fun it was, and what a great chance to get away.

We ended the weekend with a dip in Aunt Tati and Uncle Chad's pool and pizza and pie (I ate entirely too much this weekend!). Lots of smiles and one tired family!

Nothing big on the medical front this week. Catie has chemo and labs on Thursday and we will probably start the neupogen shots that night. Ugghh!! Not looking forward to that one!! Take us back to the beach! =)

We're crashing for the night and will update again soon. Please continue praying for Catie as surgery approaches.
Still swimming!
Love to all,
Jenny

Friday, June 17, 2005 7:24 AM CDT

Hi guys!

We're home and Catie's doing well. She handled things like a champ this week. She's eating already and seems to be feeling pretty well. Tomorrow will probably be her down day. She's running a low grade temp, but so far it's staying below the magic number. Hoping it stays that way.

We're headed to Tybee for the weekend for some R&R! Trying to get in a lot of that over the next 3 weeks.

Please be praying for the surgery (I know you already are, but it feels better if I type it). It will be July 7th or 8th. Pray for Catie's safety and quick recovery... for NO CANCER cells, only good cells or scar tissue... for her comfort and peace as she goes through this... for no need for an EVD drain (requires her to be flat on her back except for 2 thirty min. periods each day) and no shunt... Pray for wisdom in decisions regarding treatment following surgery.

If there is no cancer, we will continue the protocol we are on (which we mean only 4 more rounds!!). If there is cancer the options vary widely (from simply adding an oral med that has few side effects to a more difficult protocol to possible radiation). Dr. Claire feels we're going to find scar tissue, but did warn me that if there are active cells remaining, the course of action will not be clear. We will receive a variety of conflicting opinions as there is no clear data for a situation such as that. So here's to praying for good cells only!!! What a blessing that will be!

Headed to get some things done and then off to the beach!
Love to you all,
Jenny

Wednesday, June 15, 2005 12:34 AM CDT

Just a quick update...

We're here at the Clinic and the fluids are flowing. There is actually an available bed (woohoo!!) so we'll be heading across the street to the hospital shortly. Catie's napping and doing fine.

I had a chance to have a good chat with Dr. Claire. We discussed all the different options for after surgery. Hopefully it will just be scar tissue and we can finish Catie's original protocol and be done with it. I'll update more about possible options later.

We're looking at tentative dates for surgery... probably July 8th or 9th. We'll do neupogen shots this round to help counts recover a little more quickly (Catie's going to love that). There's a lot of emotion when it comes to thinking about surgery -- again, the first time was just so incredibly hard. However, the docs feel fairly confident that this time will be easier. Of course, we know there are no guarantees, but boy do we hope they're right! We'll definitely be in PICU for a night or two, but this is standard for a surgery this big. Dr. Claire said the average stay for this is a week or so (give or take a few days). So we're shooting for closer to average this go round! No need to be an overachiever and go for an extended stay.

I'll update more later.

Thanks for checking in and keep praying!

Still swimming (Rachel from TX has been signing our guestbook, "Just keep swimming!" Think Finding Nemo. Quite appropriate if I do say so myself!),
Jenny

I had a great opportunity to visit with Kim and Tim (John Michael's parents) and Janet (Jack's mom). Both boys are from Backus back home and are in for transplant at Egleston. Please pray for them and their families. JM's GvHD has flared back up.

Tuesday, June 14, 2005 12:18 AM CDT

Ok, we have plan!!!

We are leaving now to go up for chemo. Chemo will be tomorrow and we will come home on Wednesday.

We will do surgery in 3 weeks or as soon as counts rebound. Then as soon as possible following surgery she will get chemo again (hopefully on schedule, 4 weeks from tomorrow). They are trying to keep her on track for chemo.

So, I'm off to finish packing (now that I know what clothes to pack)! We'll update tomorrow from Atlanta.

Keep praying!!

Love to all,
Jenny
P.S. Lighthouse buddies, keep your fingers crossed for an extra speedy recovery!! We want to go with you guys!

Monday, June 13, 2005 10:44 PM CDT

Ok, to get right to the point. We still don't have any definite answers, but we should know the plan by lunchtime tomorrow.

Dr. Claire called tonight around 10:30. I love Dr. Claire. She knew we were probably anxious about all that's going on and she knew she had no definite answers for us yet... but she looked thoroughly through Catie's scans and compared them and called us to give us her opinion and a timetable for when we would have some more definite plans.

She believes the scan remains stable. Definitely a positive... Tomorrow is Brain Tumor Clinic. They are having the head radiologist come over to sit down with Dr. Claire and Dr. Hudgins to go over and discuss Catie's case. The first question to answer is do we do we or don't we do chemo on Wednesday. If the answer to that is no, Dr. Hudgins nurse, Lynn, will call us about surgery. If the answer is yes, we're still looking at a very, very probable surgery in the near future.

Our goal for Catie is to find her cure, and, if possible, to do so without radiation. There are other issues in her case that make us want to avoid radiation. In order to have the best chance at doing this, we have to know what "the spot," as it's come to be known, is. The only way to know is to go in after it. This is her best shot. So as far as we're concerned, if it's her best shot, it's the only choice.

So... though we still don't know what we're doing, we feel confident that with all of the prayers and the amazing doctors on our team, the best decision will be reached. What's another 12 hours (though I was NOT feeling that way while we waited on the call-- I wanted some answers =) !!) Dr. Claire is amazing... she has this soothing affect. You know she's doing all she can and that she's fighting hard for your child. We always feel better after talking with her... She is a rare gift and we're so glad we found her.

Thanks for checking in. Apologies to all those we were supposed to call. We were still waiting and it was too late to call anyone by the time we got the news we did tonight. Know that more than likely tomorrow will be a little on the crazy side. When we know our plan, we'll post it here. We'll put out a few calls to folks to spread the word to family and close friends. Feel free to call us after lunch (as we won't know anything before then) if you want the news. I know I won't remember to call everyone I'm supposed to, so when in doubt, call us.

Also, if you've sent me an e-mail, or I was supposed to return your call, please don't think I'm ignoring you... My brain hasn't been functioning normally this week!! It's like I'm losing brain cells!! Kids'll do that to you though! =)

Love to all... we'll update more as soon as we know more.
Tre', Jenny, and Catie

P.S. Thanks so much for all of your prayers. A friend tonight was headed to a Bible Study where they prayed for Catie. On the way she saw 5, count them, 5 rainbows!!

Also, a HUGE thanks to 1st Baptist Jesup's Special Ministries VBS! We're so sorry we couldn't come today! Thank you for praying for Catie and for all of the goodies you sent her way! She loved them all! We'll be taking your pop tabs to the RMcD House this week! Thanks so very much. We look forward to meeting you!

Saturday, June 11, 2005 11:30PM

Thanks so much for all of your messages. They really make a difference and encourage us. It is helping us through this time of waiting. Your mind has lots of time to think while you're waiting... thankfully, Catie's feeling great and is keeping us busy. We still don't have any new news. We don't expect any until Monday night. Either way, surgery or chemo, we're headed to Atlanta Tuesday morning.

Please continue to pray... it's a MAJOR surgery no matter how you look at it. We've begun preparing Catie as she has been around the medical world long enough to need some information. Even though it may or may not be next week, we know the surgery is coming. She knows all about going to the hospital and getting sleepy medicine as she deals with those things on a regular basis. Today as we were talking, I told her that she may have to get sleepy medicine the next time that we go to the hospital. I told her that when she wakes up she may have an "owie" on the back of her head. She asked if it would hurt and I told her that it may, but that we would have medicine that would help, kind of like her tummy medicine helps her tummy feel better. She said, "ok," and we went on playing. We'll let her add a band-aid to the back of her baby's head and wrap the head in gauze (as hers will be wrapped) when we find out for certain when the surgery will be. The pretend play has helped with the port accesses so I hope it will help with this as well. I don't want to give her too much information, but she needs some info. She knows so much already, and I think that often kids are much more perceptive than we give them credit for.

Thanks for continuing to pray. We feel your prayers and your love. Check in on JohnMichael as God has done some amazing things in his life. He is recovering in a truly remarkable way!
Love to all,
Jenny

Tuesday PM
First things first, a HUGE praise for JohnMichael and his family as he was taken off of the vent AND the kidney machine! He still has a long way to go and still needs your prayers, but WOW, what improvement.

************************************************************
On the way home we began to come into some stormy weather. As we approached it I noticed a dim rainbow. I could see the 2 sides, but the part in the middle was very dim. I watched it as we grew closer. The middle remained dim. As we entered the rain, the rainbow began to get brighter and soon I could see the entire arc of the rainbow. It was very bright and oh so beautiful. It was about that time that Tre' said "Look, there are two of them." Sure enough, there was a double rainbow. The top one was not as bright, but it was still beautiful. We couldn't see the double rainbow or the brightness of the bottom one until we were in the thick of the storm. A reminder of God's promises to his people. A reminder even in the midst of an approaching storm or right smack dab in the middle of one, God is there and His promises still stand. A good day for that.

Catie's scans are "basically stable." There was one image where it looked as if there may be minimal growth, but it's hard to tell if it's growth or the angle of the picture slice that they took. (Think of holding a lemon, it may look a little larger from one angle than from another, but the lemon doesn't change size.) However, regardless of whether there is change in the size or not, Dr. Hudgins, Catie's neurosurgeon, is ready to go back in for a 2nd look surgery. We've been watching this spot for a long time now, since the beginning. The radiologists tend to think it's only scar tissue. However, her tumor NEVER looked like medulloblastoma on scans. It was very nodular. The spot that remains is described as "nodular." It could very well be harmless scar tissue, but it could also be remaining cancer (I've got to admit that just writing that makes my stomach turn). Hudgins feels that we've waited long enough and that we should go in now as opposed to the end of treatment. This makes sense. Why leave something in there any longer if the chemo is causing no change in it and there is concern that it could begin to grow. Hudgins says that sometimes the chemo keeps the tumor at bay and keeps it from growing, but then when you stop treatment it begins to grow again. We DON'T want to be in that boat.

We don't have a definite go for surgery as Dr. Mazewski is out of town this week. She will be back in the clinic on Monday and they will have a good chat and then be in contact with us by Monday night. The general consensus from the folks that we talked to today (Hudgins, Ann- Mazewski's nurse practioner, Danielle - Mazewski's nurse) is that Dr. Mazewski is usually the one that pushes for a 2nd look surgery. Hudgins is usually pretty conservative. So if he's saying, "Let's go ahead," it's probably safe to think in that direction, especially given that Dr. Claire has said all along we're going to have to check it out if it's still there.

I know that a lot of you following our story don't know much about the beginning of Catie's journey. Let's just say that the first 5 weeks after her diagnosis were, hands down, the hardest weeks of our lives thus far. She had numerous complications -- she required 4 additional surgerise following the first big one, she required an EVD drain for close to 2 weeks that required her to remain flat on her back except for two 30 minute periods a day (that was the only time we could hold her), she had SEVERE blood clots in her brain and 2 brain bleeds, a staph infection in her brain, she could not make any vocal sounds for a couple of weeks following surgery, it took her a long time to gain her words again, though she could crawl and sit up prior to surgery, when she woke up she could not even roll over... as far as I am concerned it is a miracle, and an answer to many, many prayers that she pulled through and is as healthy and bright as she is today. I do not share all of that info. to be pessimistic, I share it so you can pray with us.

Hudgins feels that while there are no guarantees, the surgery will probably not cause as many complications this time. It is invasive (heck, the spot is in the middle of her brain), but not so much as last time. We're going after a spot that is approx. 1 cm as opposed to a 5 cm mass. He says she is much stronger now, she's bigger and that is good. I pray that he is right.

So, while we are, in a word, "bummed." We see the upside as well. We'll KNOW what that spot is... and who knows maybe it will be great news that it's just scar tissue and she's been "cancer-free" all this time. We'll have information that will enable us to make better decisions. She will be in the phenomenal hands of a very gifted neurosurgeon whom we trust.

Remember, nothing is definite until we hear from Dr. Mazewski, but my gut feeling says this is the direction we're going. It could be as early as next Wednesday, or it maybe a month away. When we know, you'll know.

This also raises some questions about what we will do following surgery in regards to treatment. Do we pick up where we left off and finish the original protocol? Do we try something different? We won't have these answers until we talk to Dr. Mazewski and until we know the pathology of what is removed. Poor Dr. Claire, when I get to pick her brain, I'll probably have about 1,000 questions. =)

Specific prayer requests...
*That the surgery be safe and successful. That God guide Dr. Hudgins's hands to the spot and that he is able to successfully remove all that needs to be removed.
*That the pathology reports show no cancer and that these reports be accurate.
*That Catie avoid complcations... no clots or bleeds or infections... that she can talk and hopefully even walk following surgery.
*That the spot has not grown, that the only difference was the angle of the picture slice.
*That we know the correct course of treatment following surgery.
*For Catie to handle this all well. She's much older and more aware of things than she was the first time. After watching her determination to get down and walk after sedation today (she is always super wobbly after sedation), I can only imagine how much physical setbacks could frustrate her. Obviously this is of less concern than her survival and cancer and all that, but she's been through so much already. I want this to be as easy as possible for her.
*Strength for all of us.

"For I know the plans I have for you," says the Lord, "Plans to prosper and not to harm you, plans for a hope and a future." Jer. 29:11

Thanks for checking in and more than anything, thanks for your prayers.
Love,
Tre', Jenny, and especially Catie

Sunday, June 5, 2005 10:31 PM CDT

NEW PICTURES ADDED SUNDAY PM, 6/5

Hi all! We've just returned from our whirlwind weekend! It was so great to attend the Amy Grant fundraiser for the Lighthouse. Tre' couldn't go, so we grabbed our buddy Lisa and headed out for a girls' weekend! It was quite a good time!

I know I've written about it before, but just in case there are those who haven't heard... The Lighthouse is one amazing organization. It provides a place of retreat and respite for kids with cancer and their families. It is truly a place unlike any other. It is a chance to "get away from it all," especially cancer, for a week. It is a chance for a truly relaxing vacation. It is a place where there are volunteers who go way above and beyond the call of duty to make sure the week brings fun, relaxation and renewal. It's a place wear there are a dozen other famlies like yours, who deal with cancer on a daily basis and understand your fears. A place where siblings of patients have a chance to shine and be the center of attention. It's a phenomenal organization. We're going in July for a week, and I truly can't wait.

Last year, Amy Grant came down and did a concert to benefit the Lighthouse. More that $100,000 was raised. We're hoping they raised even more this year so that more and more families can benefit from this amazing ministry. It was good to see familiar faces this weekend and we are so thankful for each and every person who gives and works to make Lighthouse all that it is. Please pray for this ministry, as it is so needed. Families need a chance to just be a family without having to worry about cancer. Their website is listed below if you would like more information or are interested in making a donation.

We got in some beach time (which Catie enjoyed-- we did too). But... the highlight of the weekend was definitely the concert. Amy Grant puts on a great show and she was very kind when we were able to meet her. Catie and some other kids were able to get up on stage with her for one song. Catie was very straight faced through the entire song, so I wasn't sure what she was thinking. However, when Amy sat her down on the edge of the stage when the song was over and I was reaching up to get her, Catie looked at me and said, "no get down, me stay here!" She liked it up there! We watched the remainder of the concert from our blanket front and center (think front row, 50 yard line). It was quite a show and we really enjoyed it.

Throughout the weekend, I thought of JohnMichael as he remains in PICU fighting so very hard. I thought of the families of those who have lost their children. I know they would give anything for a weekend at the beach with their child. Please pray for them. The ache after the loss of a child is one I cannot fathom and, quite frankly, one I pray I never know. Please also pray for JohnMichael and his family.

Tomorrow we get back in the car to head for Atlanta. Catie's MRI is at 8:00 on Tuesday morning. Praying, praying for stable or clear...

Love to you all,
Jenny

P.S. A friend of ours, Jay , is having his scan next week as well. His is Thursday morning, June 9. I know that they would welcome your prayers and encouragement as well.

Wednesday, June 1, 2005 9:35 PM CDT

Hi all! Catie continues to do very well despite low counts (ANC - 140, platelets - 49 for any who are interested). This is the lowest her platelets have ever been which is pretty remarkable considering how much chemo she has had. It seems to be her white count and ANC that always dive the most. Even with low counts, it looks like we've got the ok to go to the Amy Grant Lighthouse concert. So we're washing hands like crazy, watching for bruises, and looking forward to a fun weekend at the beach.

The weekend will be followed by Catie's scan on Tuesday morning. Please pray for this as it approaches. We hope to have results before we head home as we will see both her neurosurgeon and her nurse practioner that afternoon. We are praying for stable or, even better, the ever elusive CLEAR. Her MRI will begin at 8:00 that morning.

In recent days, our minds have not strayed far from our friend John Michael and his family. He is in the battle for his life, fighting numerous complications from his BMT. Please join us in praying for him and his family. I know that the prayers said and the encouragement that so many of you have offered on their webpage is helping them to get through this. Please continue to support and encourage them. They truly need it right now.

Thanks for checking in on us.
Love,
Tre', Jenny, and Catie

Sunday, May 29, 2005 9:54 PM CDT

NEW PICTURES ADDED SUNDAY PM
Hi all,
Just a quick update... We're enjoying our Memorial Day weekend. We've had lots of outside time and good times with friends. Tomorrow should hold more of the same. Catie's energy level is improving and she is grumpy less often, so it looks like we're getting this round out of her system. Counts are probably pretty low right now, but she seems to feel well.

My main reason for updating tonight is our friend John Michael . He is very sick and is in PICU at Eggleston in Atlanta. He needs your prayers as does his family. Please join us in praying for his body to fight off this infection and other complications that may arise. Drop his family a message and let them know of your prayers and concern for their family. You have no idea how sustaining your words and prayers can be.

Thanks for all of your messages this week. It has brightened OUR week and we are so thankful for each and every one of you. You are part of our journey and we appreciate you coming along for the ride.

Much love,
Jenny

Thursday, May 26, 2005 9:26 PM CDT

Ok... a moment to vent. Pediatric cancer really bites. That's putting it mildly. These kids go through so much. Some do AWESOME. Others are not so lucky. We lose too many. And too many have to hear the R word... relapse. This week is was Jake Rivers's family. He has been undergoing treatment for leukemia and has relapsed in his CSF. Please pray for them and drop by their site to encourage them. Hearing from others and knowing people are praying is so very important when things are hard.

While we're thinking of others who could use extra prayers right now, go by and check on John Michael . Things are really tough right now. He's in the early days post-transplant and battling high fevers. Please pray for the engraftment of his sister's cells and for protection from infection.

When I went to our friend Kendrie's site tonight, I found her mom's entry beginning with the word melancholy. I can relate to that. Sometimes this journey takes you there. Nothing that's going on with your child has to make it happen. It's just like some mornings you wake up and think, "holy crap, my kid has cancer and we pump poison into her body on a regular basis, and if she gets a fever this could happen and oh yeah, she can't have fruit today b/c her counts are low and..." you catch my drift. Then the other side of my brain kicks in (it's a little frightening that I'm sharing my conversations with myself on-line for you all to read)... anyway, the other side kicks in and I think, "Yes, all that is true, but she's doing great, first and most obvious, she's still here and fighting and doing well enough to get chemo, she hasn't had a fever since (oops, knocking on wood NOW before we even finish that thought), her balance is improving, she's WALKING, she's finished 21 rounds..." It's kind of an argument with myself trying to prove that she's going to be ok. The argument is never really won or lost. It's just part of the self talk that helps me keep a balance of reality and hope. The reality that not all kids make it and for Catie there are no guarantees either, and the hope that we have found her CURE, that all that she's been through and all of the prayers that have been said have brought her health.

So I'll go with Kendrie's mom and call it a "melancholy" evening. All days aren't that way, but it happens. And when it does I try to remind myself that we have been SO lucky b/c Catie is doing so well. But, that said... it still really sucks that she, or any other kid (or adult for that matter) has to go through this. It stinks even more to be in the relapse boat. But the ones we pray for the most are the families of those whose journey ended in victory, but not here on earth.

Pediatric cancer really bites.

Please keep all of our friends in your prayers.

Jenny

Tuesday, May 24, 2005 9:40 PM CDT

Oh how I love summer nights... Nights when it stays light till 9:00 or later... nights when it's warm, but not too hot (ok, maybe that's spring in south GA, but you know the nights I'm talking about). Tonight was one of those nights. We took Catie's new blow-up pool down to the neighbors house to use their air compressor to blow it up. She had been talking about it all afternoon, but by dinner time I thought she was going to be too tired. She found her 2nd wind though, so we headed down. After it was blown up we set it in the grass for her to play in. Who knew a pool with no water could be so fun. She had a blast flipping over the sides, sliding on the little slide, lying down in it... It was so nice to just watch her playing and laughing and having a good time. The breeze was blowing, the sunset was beautiful... it was just really nice. One of those nights that makes the whole day look brighter.

It was somewhat of a long day today. Catie has a couple of really great hours and then she crashes. If she'll take a nap, that's no problem, b/c she wakes up refreshed. If she won't take a nap, it makes for one tired toddler who wants to be held. Nothing wrong with that at all, but you can tell by looking at my house that we've had some good snuggle time. I know it has to be hard for her to not feel 100%, but I am so thankful that she feels as well as she does and that she has such good spurts in between the tired. Her balance is improving since this treatment, but it's not back to normal yet. We will stop the nausea med tomorrow and she should be fine.

We have lots of things coming up, so I'll give a quick update. We have a clinic visit tomorrow for labs. Medically, that's the only planned thing this week. Her MRI will be Tuesday, June 7 at 8:00 AM. That afternoon we will see her nurse practioner and her neurosurgeon, Dr. Hudgins. It will be good to see Hudgins as we don't get to see him very often. He'll go over the MRI results with us. I also hope to have a chance to discuss his thoughts about what we should do following the completion of Catie's protocol. More than likely, if "the spot" is still present on the MRI, he will have to do surgery so that we can biopsy the spot. The thought of another brain surgery is not pleasant at all, but the thought of leaving it there if it could be cancer is worse. Please join us in praying not only for Catie's healing and long, healthy, happy life, but for a clear scan and clarity regarding what we should do following treatment. The following week (6/15-/16) Catie will have round 22 of chemo.

One exciting thing that will happen in the next couple of weeks has to do with the Lighthouse. The Lighthouse family Retreat is an amazing place where cancer kids and their families can rejuvenate and reconnect. It is most relaxing place on earth. We will attend a benefit concert at the beach. Amy Grant will be there and we know it will be a great time. We can't wait to go!! If you're interested in making a donation to an organization that does great things for families, check out their link below in the Links section.

Well, I've rambled on enough here. I'll sign off for now. Hope you guys have a great week!
Love,
Jenny

Friday Night, 5/20/2005

********************************************************************************
NEW PICTURES ADDED MONDAY PM -- AN UPDATE SOON, I PROMISE!
********************************************************************************

Home sweet home... we'll write more soon... mountains of dirty clothes to wash and mail to sort through!
Jenny
P.S. No puke since 12:30 this afternoon and Catie's started eating. WooHoo! She's perked up a great deal in the last 8 hours and we are so glad. It will be a couple of weeks until she's back to herself completely, but at least she's talking and kidding with us again.

Friday AM
Hi all!
Catie will get her last chemo of this round around 10:00 this morning. Yesterday she was awake no more than an hour and a half, but that's a good thing. The increased nausea meds had really seemed to help at first, but we're about equal with last time as far as how many times she's gotten sick. She would put nothing in her mouth yesterday not even ice chips. But right now she has finally said yes to a Slush, so I'm headed downstairs to get her one. We'll see if she'll eat it...

A big thanks to my neighbor, Leslie for driving up to help out this week. She's had cleanup puke duty on more than one occasion! You know you have a good neighbor when... Just kidding, we already knew she was a good neighbor and friend!

Thanks for checking in on us. Good luck to all our friends graduating from high school tonight and this weekend and to my sister who graduates from seminary tomorrow! Wow!

Love,
Jenny

Thursday AM
Hi!
We're doing well. Catie's sleeping a lot and has only gotten sick once so far. It was right when it was time for her meds, so I'm hoping that means it stays in check. When she's awake, she doesn't want you messing with her much -- just let her lay there and drift in and out. She still wants to snuggle though. They've upped her nause meds this time, so I'm hoping that's going to make a big difference. If things continue to go well, she only has to get Cisplatin one more time!!!!! She'll get a different chemo today and again tomorrow and then we should be able to head home.
Hugs to all!
Jenny

Wed. PM
Hi all!
Catie did well with the dental stuff. Once they got her under anesthesia and could really look at her teeth well, they discovered that she DID NOT have any cavities. Definitely a good thing. The color changes in her front teeth were from either chemo or the iron she takes daily or both. They gave her a good cleaning and her teeth are now pearly white.

We've settled into our room and we will be here until Friday. They should start her hydration soon and the Cisplatin will start a couple of hours later.

She's just had her first ever Slushy and she's decided she likes it! She gobbled up the whole thing (and it was big). I think we have a new way to keep her hydrated after this round.

Hope you're all doing well. Big hugs to all you mom and dads of high school grads out there. Thinking about you this week!
Love to all,
Jenny


Monday PM
Hi all!
Hope this finds you doing well. We are great, very tired, but great. This weekend we were able to attend my little brother's graduation from Mercer (he's actually much taller than me, but he'll always be my LITTLE brother). I won't brag on him TOO much here, but I will say that he walked away with 2 of the 4 awards that they give out at graduation. One of the awards was a School of Liberal Arts award. The other was given to 2 students out of all 10 of the schools that are a part of Mercer (including grad schools like Med, law, pharmacy, theology, etc...). Quite impressive if I do say so myself. I think I'll claim him!

The next morning we headed to Harbour Club at Lake Oconee for the Ronald McDonald House golf tournament. We spent a great 2 days there and they raised close to $150,000. We were able to share what a blessing the House has been to us and tell how it's eased our journey through the world of childhood cancer by providing a place to stay when we're in Atlanta and meals and support... I could go on and on. Catie was quite the star and kept everyone entertained. She went from table to table making friends. It was a joy to see her so happy and outgoing. I continue to be amazed by her grace and zest for life.

Speaking of Catie, I think I just heard her crying upstairs. I think I'll go check on she and Tre'. Tomorrow's a down day and all the medical stuff starts early Wednesday morning.

Thanks for checking in!
Love to all!
Jenny

P.S. I just wanted to let you all know (you caringbridge junkies already know) that Chandler got really good news from his biopsy. 3 of the 4 places that they tested were the mature (aka OK kind) kind of neuroblastoma. One place was still the yucky kind, but the docs are hopeful that it will follow suit and mature as well. He'll be taking some meds to encourage this but it means that at this time he can be a "normal" kid. No lines, hospital stays, chemo! WooHoo!! We're thrilled for them. (/ga/chandlerbooth)

Also you may want to stop in and offer words of encouragement to John Michael. He's getting close to finishing the chemo part of his transplant and he'll probably be feeling pretty crummy in the days to come. They could definitely use your prayers! (/ga/johnmichael)

Hugs to all!

P.P.S. I'm dreadfully behind on e-mails. So if I owe you one, forgive me, it's coming!! Let us get this round of chemo behind us (we'll be home on Friday) and I'll get back to you, I promise!!

Thursday, May 12, 2005 10:04 AM CDT

Hi all!
We hope this finds you doing well! We're doing well and have good news to share.

First-- Catie's counts... After an ANC of only 54 last week, she rebounded in a mere 7 days to a whopping 1508!!! Her little body just amazes me with it's ability to bounce back after being hit again and again.

2nd -- Catie had her last speech therapy session. She is talking up a storm and is no longer delayed in this area. The leaps and bounds she has made in this area in the last 4 months is absolutely astounding to me!

3rd -- Catie's physical therapist did an evaluation (the Peabody) on her this week. There are 3 areas in gross motor skills that are tested. Though she was below the mean in all 3 areas, 2 of the scores were good enough to keep her in the average area (-.33 in stationary and -.67 in object manipulation for those who are interested). Her score in locomotion is still quite significant (2 points below the mean) and is considered poor, but there's good news here too. The gap has not grown. The gap here has remained stable meaning she is progressing at a good speed. She just started off behind and is still behind. Though we suspect she probably won't be the next sports superstar, we're hopeful that she's young enough to learn to compensate for the deficits. We're THRILLED with her progress and are so thankful for all the work her therapists have done with her!!

Tomorrow we will go to Relay for Life. We don't have a team in this year as we are directing our fundraising efforts towards CureSearch, but Catie has definitely earned the honor of walking in the Survivor Walk. It's always a very moving time and a lot of money is raised for ADULT cancers. Saturday we will attend my brother's graduation from Mercer Univ. and then we will head to Harbor Club Golf Course on Sunday for a Golf Tournament for the Atlanta Ronald McDonald Houses. They have been a HUGE blessing to us. Then we head to Atlanta. Wed. Morning Catie will have a dental procedure done (requires her to be put under anesthesia and intubated -- YUCK!) and then we go inpatient for the 3 day chemo. The rough one! YUCK again! That's ok though, b/c there is only 1 more yucky one after this one. She'll have 5 remaining in all after this one.

The closer we get to finishing, the more I dream about it. It feels within reach. Then, the fear and worry sets in. The memories of kids who were so close to finishing treatment, or kids who had just come off treatment when their cancer came roaring back... That's very frightening and almost makes me scared to look forward to the end of her protocol. However, we continue to march on... There ARE kids who have finished and done GREAT!! Kids who grow up and have families of their own. Oh, how I hope to hold her baby one day... Thanks for praying with us.

Much love and hugs to you all!
Thanks for checking in!

Jenny

P.S. Oh yeah, I'll be taking some stuff to John Michael while we're in Atlanta. If you live nearby and want me to take things to add to his or Anna's calendars, just let me know and I'll come pick it up. If you need more info. on this, look back a few entries in teh journal history. Find the entry that starts out with "WE NEED YOUR HELP." Thanks!

Sunday, May 8, 2005 9:49 PM CDT

Oh how very grateful I am for today, for our girl that made me a mom... My thoughts have been with the too many moms whose kids aren't with them this Mother's Day. I can't begin to imagine...

There is so much I could write today, but words could not begin to describe how very lucky I am to be Catie's mom. Her snuggly mornings, lively spirit, toughness, tantrums, hugs and kisses, playful nature, and cheerfulness have enriched my life in ways I can't begin to name. She has taught me so much, and I pray for many more years of lessons to come. I pray that God continues to shape me into just the mom she needs.

Today was Catie's best day since her counts started falling. I think her hemoglobin is coming up. Her white count and ANC should follow. We'll head to the clinic on Wed.

John Michael goes in for BMT tomorrow. They'll need extra prayers and encouragement in the coming weeks. We're still collecting stuff for he and his sister, Anna, for their calendar. Let me know if you'd like to contribute (more info in journal history).

Hugs to all,
Jenny

Thursday AM, May 5

HAPPY BIRTHDAY DADDY!
Love, Catie and Pup

Wed. PM, May 4
WE NEED YOUR HELP!!
Many of you may know about John Michael. He is a bright young man who lives here in Effingham County who is battling AML. He and his family are preparing to go to Atlanta for his bone marrow transplant. They will be gone for quite a while and John Michael will spend several weeks in the hospital. We are going to try to put together a calendar that will have things for him (and his family) to open each day. I am going to get an over the door shoe holder and put numbers in it for the different days. I need your help filling it up with notes, pictures of friends & family, cards, whatever you think might brighten his day. BMT kids are NOT allowed to have stuffed animals, fresh or artificial flowers, anything that is a great dust and germ collector that can't be wiped off easily. Cost doesn't matter, it's the fact that there is something to open to show folks are thinking of them -- anything quirky, silly, or funny would be great! John Michael is 13 and he has a younger sister, Anna, who is just finishing up 1st grade and will be going with them (she is his bone marrow donor). John Michael likes Auburn (GO DAWGS -- Sorry, JM, had to throw that in) and things like colored pencils, mechanical pencils, etc. might also be good. Remember whatever we get needs to fit in a shoe pocket. I know this is short notice, but I am hoping to have enough to fill up the first week of his calendar before they leave on Saturday. If you would like to contribute, let me know by signing in the guest book or e-mailing me at the address at the bottom of this page. If you are part of a community (Rincon 1st Baptist, Bible Baptist, Lost Plantation, Ebenezer Middle) that knows John Michael and his family and would like to volunteer to gather some things from folks, let me know and then I can pick up things from you. I know of some families who have used these calendars in transplants and they say it helps keep up spirits during the long weary hospital days. Please e-mail me if you are interested in helping. Also, you can mail things to me and I can take them to Atlanta when we go up for Catie's treatment. E-mail me and I will send you our address as I'd rather not post it on the website. Be sure to include John Michael's name in the subject line so that I am sure to open the e-mail. We've got to act quickly, so please help us out!

On the Catie front. Counts were down from last week (HGB=8.2 and ANC=54). WAY BAD ANC!!!!!! Hopefully we can move up from here. Please pray that she continues to stay healthy.

Chandler's surgery is Friday. We're praying for only good cells discovered in the the biopsy.
Thanks, for checking in,
Love,
Jenny

Tuesday PM
Ahhh... those TODDLER DAYS!!!! You know the ones I'm talking about, the ones that make you want to laugh and scream all at the same time... the ones where a little one tests everything you say, just to see if you really mean it... the ones where you throw your kid over your shoulder (ok, ok, at least on your hip) and drag her out of the store screaming... the ones of with sweet, "just because" hugs...

Today was a toddler day if I ever saw one. So, in honor of it.....

You know you're the parent of a toddler if...

*much of your conversation revolves around tee tee and poo poo ("Mommy, you go poo poo?" "No just tee tee." "Oh, you go tee tee mommy?")

*you clean your child's tee tee off of the floor right next to the toilet where your child tee teed (even though she just told you she didn't need to go) while watching the water fill the tub (mental note to put her in quicker next time)

*as you get up from the table at a restaurant to go to the restroom when as your about to open the door your child scream across the room, "Mama where you going?" (even though she could have asked someone at the table in an "inside voice"

*You don't often wear jewelry and when you do, you remember why you usually don't

*you hear and say, "no" quite a bit

*you mentioned time out at least 3 times today

*you've ever managed to use a booster chair at a restaurant as a timeout chair

*you've ever removed a screaming child from a store

*you've ever gotten grease marks on your pants where your child wiped their hand and then had them continue to wipe it with a napkin trying to get it off

*you've cleaned pen, crayon, marker, etc. off of anything other than paper

*you've taken a stroll and noticed every flower, bug, and rock along the way

*you've received spontaneous hugs or "I love you's" just because

*you've shared your drink with your little one even though the same thing is in her cup, but yours "tastes" better

*you've debated and decided to order a child's plate at a restaurant instead of sharing only to have your little one eat nothing on the child's plate

*you've debated and not ordered a child's plate b/c you figured you child wasn't going to eat much, only to have her eat everything on your plate

*you find yourself constantly putting clothing back on the baby dolls; how is it they NEVER have their clothes on?

*your child looks at you and says, "no bed, me no tired" as you watch her fight to keep her eyelids up

*music is a vital part of your day-- you sing about just about everything

Oh, I could go on and on.... We are thankful for EVERY SINGLE TODDLER MOMENT!!!!! Catie is growing and learning from each one of them and it is so fun to watch (even if it makes me a little crazy every once in a while).

Clinic visit tomorrow.

Love to you all,
Jenny

Sunday, May 1, 2005 9:58 PM CDT

NEW PICTURES ADDED SUNDAY PM

We hope you had a good weekend. Ours was nice. Catie was dragging a bit for most of it and I suspect it was b/c her hemoglobin was a little on the low side. This evening she really perked up and seemed to be feeling great. It was good to see her with lots of energy again and we definitely hope it continues. Her counts are still low so we've been staying close to home, but there's plenty to keep us busy out here in the country.

We have this week and next week for Catie to finish recouping before things really crank up for us again. Saturday, May 14, we'll head to my brother's graduation (college) and then we get to participate in Atlanta Ronald McDonald House Charities' golf tournament. Tre' will get to play and we'll get to share what the House has meant to us throughout Catie's illness. We're definitely looking forward to this as RMcD House has been so great to us. We stay there almost every month and Catie is perfectly at home there. We'll head to Atlanta from the tournament for our monthly trip. Catie will have some dental work that requires her to be sedated and intubated. Chemo, the YUCKY one will follow this and we'll spend the remainder of that week in the hospital. Please continue to pray for her -- for protection from infection (we are so thankful she has stayed so healthy), protection of kidneys (her test was great--big praise), protection of her hearing with no further loss, and her long-term health in general. Her next MRI is June 8.

She continues to be a "normal" toddler in so many ways. Her balance is back to normal now following this last treatment. It seems to be taking a little longer these days than before for her to bounce back, but I really believe that it is the cumulative effect of the chemo. That tiredness just always shows up in her balance first. It still does us good to see her getting around easily without as many balance problems. She's definitely asserting her independence and has found a new level of screaming when she doesn't get her way. This has landed her in timeout on more than one occasion and that seems to have made a difference. She loves to "help" and does so often. She's learned to pick up her toys and often (though not always) does so without being asked. She seems to be perpetual motion when she is awake, even on days that she doesn't feel 100 percent. We are so grateful for all of these things.

Her latest favorite thing is doctoring her babies. She's always done this some, but we recently made a port for one of her babies. She spends tons of time each day caring for the baby, giving her medicine, encouraging her, etc. You nurses would be quite impressed by how well she "clean, clean, cleans" and then hooks and unhooks flushes to her baby's line. I hope this makes accesses a little easier. For some reason being accessed has bothered her lately. Hopefully a little pretend play will help, we shall see.

A LITTLE NEWS ON SOME FRIENDS
*John Michael and his family are preparing to go to Atlanta for his transplant. Please pray for them and offer them encouragement at www.caringbridge.org/ga/johnmichael

*Chandler's surgery has been moved to Friday (he had an icky stomach bug that caused it to be postponed). Please pray that surgery will go smoothly (he's in the very capable hands of our own personal favorite neurosurgeon, Dr. Hudgins) and that the biopsy will reveal nothing but good, safe, healthy cells. /ga/chandlerbooth

*GREAT SCANS FOR KYLIE! Kylie got CLEAR scans last week. What an amazing answer to prayer!! /ga/kyliescorner

*Congratulations to Lauren who received her last chemo last week. Please continue to pray for her and her family. Coming off treatment can be frightening. /ga/lauren

*Keith's family has learned that his leukemia has returned and they are bringing him home. Please pray for them. /ga/keithskorner

Thanks for checking in on us. Your prayers mean more than you know.
Love to all,
Jenny

Thursday, April 28, 2005 10:08 PM CDT

Hi all!

Boy, spring can be a busy time of year. It seems we've been crazy busy though I can't think of exactly what we've been doing.

Just a quick update tonight. Catie is doing well but her counts are extremely low and they will continue falling through the first of the week. (Her white count is 0.7 and her ANC is in the 300's for any out there who are interested.) Her platelets are a little low and her HGB is as low as it's been in a year. She needs blood when she gets below seven and she's at 8.5 today. So we're watching her close. It's WAY obvious when her hemoglobin gets too low. I'm thinking her schedule is going to slow down a bit since she doesn't need to be around a lot of different folks. Please pray with us that she remains infection free.

There's lots more to write, but the words just aren't coming tonight. I'll write more and post new pictures before the weekend is over.

Love to all,
Jenny

Friday, April 22, 2005 9:28 PM CDT

NEW PICTURES ADDED SATURDAY MORNING!

Hello, we are home! Chemo went well and we have put round 20 behind us. We don't have results from Catie's kidney test yet, but we get hearing results right off the bat. She has the tiniest amount of hearing loss possible in her left ear. She could not hear the highest level of mHz (8,000) important for hearing at 20 decibels, but she could hear it at 30 decibels. So the loss right now is not significant and not anything we (or she) would ever notice except in a formal hearing test. We would not start looking at lowering her dosage or talking about hearing aids until the loss got into the 6,000 or 4,000 mHz range. I think I explained all of that correctly. Cisplatin (the roughest chemo drug she gets) typically causes hearing loss beginning at the highest range. The effect is cumulative, so with more chemo the risk goes up. However, cisplatin is a VERY effective drug, so it is worth the risk. I am not surprised at all by this slight loss of hearing (though I have not noticed Catie having any trouble until we were in the sound booth) as she has already had 6 rounds of cisplatin. We do pray that the loss remains minimal and that we can continue at the full dose with the 2 remaining doses of cisplatin.

Following her hearing test, Catie, Mrs. Carmen (Tre's mom), and I headed to Alabama. My PawPaw passed away Wed. night. We were able to get there yesterday afternoon and we had a really nice visit with family. PawPaw lived a full life, survived WWII, crash landing in France, melanoma, and an eye tumor... He was definitely a survivor. He has been sick for quite a while, and though he will be missed, I know he is pain free and no longer suffering.

We moved every few years growing up and Granny Jo and PawPaw's house is the place that was constant throughout my childhood. There are lots of wonderful memories on that hill they live on and in their house. I soaked up the smells, the sounds, the tastes (Granny made us chocolate and biscuit for breakfast this morning), and let the visit take me back to my younger days... running through the woods, playing "war" with the neighbors and their cousins (not a good idea to use pine cones as weapons)... "mountain climbing" up the red clay hills and then sliding back down... kick the can and flashlight freeze tag on hot summer nights with the crickets chirping in the background... Granny singing as we sat in the swing on the front porch and watched the world go by... lots of good memories. Keep Granny in your prayers as they would have been married 59 years in June. That's a long time! When she was 14 she met him and said that he was the man she would marry. Sure enough, she did.

Catie enjoyed the visit and kept everybody on their toes! She was one little entertainer! What a big time she had.
Thank you for checking in and for continuing to pray!
Love to all,
Jenny

Wednesday, April 20, 2005 10:21 AM CDT

Wed. PM
Well we have a room. We're not on our normal wing (it's full) and we'll miss our folks on 3North, but we're back in familiar territory on the first floor. We moved in on the 1st floor for about 4-5 weeks when this all this started so we KNOW Catie will be well taken care of. We're hoping to see some familiar faces while we're down here.

Chemo is finished and that makes 20 rounds behind us and 6 ahead of us!!!!! WOW!! Almost brings tears to my eyes as I think of all she's been through and how we get closer with each day. Please pray that she stays healthy and infection free and that she never needs another ounce of treatment once she finishes her protocol.

She'll get more rescue and nausea drugs tonight, GFR (kidney) test at 9:00AM and hearing test at Noon. The tests are a "routine" part of her protocol. We're praying for great results so that she can continue to receive the full dose of the yucky drug.
Love to all,
We'll let you know when we make it home.
Jenny


Wed. AM
Hi all!

We are at the clinic in Atlanta and things are going well. Catie is getting fluids and chemo should start in a couple of hours. We will probably get our 3 hour Mesna (rescue drug for the bladder) before we head over to the hospital.

I have to say that we love all of Catie's doctors. The quality of care that she receives both in Savannah and here in Atlanta is excellent. Catie's primary oncologist, Dr. Mazewski (aka Dr. Claire) is truly one amazing woman. I liked her from the first time that I met her. She has given us such comfort and hope through this journey. Her interactions with Catie are wonderful and she does her neuro checks in such a sneaky way that Catie never even knows she's being checked out. The last few months, Catie has not liked being accessed as much. Today after Danielle accessed her (Danielle does a great job of distracting her and letting her "help" too-- she gives Catie medical stuff to use on her babies to make things easier) Catie was fussing and asking for a Band-aid. I pulled a Band-aid out of the drawer, but that wasn't exactly what she was looking for. She wanted the Band-aid b/c she wanted her port deaccessed and then the Band-aid put on it. Dr. Claire was wonderful with her. She talked with her about the "drinks" and "chemo medicine" that she had to have and explained that the only way she could get it was through her port. She really took the time to talk it out with her instead of just having me talk Catie through it. As a mom, that meant so much... that your child's doctor sees your child as a kid and not just a patient, that she wanted to put Catie at ease and help her understand all that was happening. Dr. Claire has always been wonderful to us. She's good at putting both parents and kids at ease. Catie gradually calmed down, and after a few minutes with papi (her pacifier) she was better. We put the Band-aid on the tegaderm just for fun and soon she was digging through Dr. Claire's little black bag of tricks! Her bag is full of fun little toys that kids like to play with, but that allow her to check the things she needs to. We are so grateful that such an amazing doctor was placed in our life at just the time that we needed her. It's hard to describe just how much she means to us.

We'll head over to the hospital when a room becomes available and we'll update you later. Her 2 tests will be tomorrow. Also, if you don't mind adding my granddad and that side of my family to your prayers. He's very sick and we just pray that he is comfortable.

Love to all,
Jenny

P.S. Thanks for all the great messages you've left this week!! They keep us smiling.

Sunday, April 17, 2005 9:47 PM CDT

Oh what a BLAST we had at Camp Sunshine... and oh how very tired we are!!!!! I'll write all about our weekend later, but for now I'll let Catie's words sum it up. As we were leaving this morning, I went to put her in her carseat and she said, "No. No go home Mama. Want more SUNSHINE!!" It's one amazing place where having a bald head is completely normal! What amazing volunteers and what a great time. We'll share details later.

As for our week, we leave tomorrow for Atlanta. We'll make a quick run to Alabama and back on Tuesday. And then clinic visit and inpatient chemo Wed.-Thurs. Catie will have hearing and kidney tests while we're there.

Thanks for continuing to cover us in prayer.

Love to all!
Jenny

Wednesday, April 13, 2005 11:18 PM CDT

Hi all!

Man am I worn out! I just finished steam cleaning our carpets and couch/chair cushions!! We're hosting BUNCO here tomorrow night and our carpet COULD NOT be seen without a good cleaning. You should have seen the filthy water I dumped out of the tank after each round.

We're doing well, clean carpet and all! We headed to the clinic today to check counts. Catie's counts are good, but have dropped significantly since we stopped the neupogen. Her white count is 3.2 (normal 4.5-17 I think) and her ANC was 1440 (awesome for a chemo kid). Normally her counts wouldn't be this high yet, so the neupogen definitely made a difference. I couldn't believe she dropped from 27.1 to 3.2 in 6 days after stopping the shots. We'll take the good counts though, they'll allow us to enjoy a great weekend at CAMP SUNSHINE and then we're going to try to go see my Granny Jo and PawPaw in AL. My PawPaw's been pretty sick, so we're glad we're going to be able to go. Then it will be time for chemo! It's going to be a busy week!

Catie has been feeling great and going strong. A few glimpses from the last couple of days...

*Catie was "helping" me with the laundry today. I started the washer and went to the bedroom to get a few more things to throw in the load I was doing. I came back to the laundry room to find 1/2 the box of detergent on the floor! Catie was grinning saying, "I play in dirt Momma!"

*Catie was playing on the floor in the bathroom while I took a shower yesterday. I didn't even realize how quiet she had gotten until I cut the water off and opened the curtain... She pulled her shirt out of the toilet and informed me she was cleaning it!!!!! I had to laugh! Thank goodness the toilet was clean.

*This morning I was putting my contacts in. When I finished, Catie picked up the case and took them into the next room saying, "I'm going to put my eyes in." I peeked around the corner and watched as she opened first one side, then the other and pretended to "put her eyes it."

*Today at the clinic, she took Mrs. Edith's vitals, "blood pressure and temp temp" as she says. She later proceeded to march through the building with a stethoscope around her neck like she owned the place!!!!

She is definitely keeping us on our toes!!!!! How great is that?!?!

Thanks for your continued prayers.

Love to all,
Jenny

Friday, April 8, 2005 9:54 PM CDT

How's 27.1 for a white count?!?!?! I just about passed out when they brought lab results to me this afternoon!!!!! (Normal is 4.5-17 I think.) Needless to say, no more shots for Catie (for now anyway)!!! To be honest, I think Tre' and I are as happy about that as she is. As we left the clinic today I jokingly told Nurse Jennifer that "hey, we could even go to Chuck E Cheese with counts like that!" Just kidding! We're still avoiding super germy kids' places, but we are definitely getting out and about with counts like that!

The high white count also explains the grumpies and tiredness we saw in Catie yesterday. I think she was just achey from her bone marrow working so hard to pump out good cells. She was pretty good for most of today and is sleeping like a rock right now.

We're gearing up to head to Camp Sunshine next weekend! We're SOOOO excited b/c lots of our pals are going to be there. It's also our very first Camp Sunshine visit! We've heard nothing but awesome things about it and we're VERY excited. We can't wait to visit with everybody.

I have heard the song, "I Can Only Imagine" about 5 times this week. It is such a beautiful song and I hear it differently than I would have had it not been for our journey over the last year and a half. My hopeful thinking of the beginning of the week has lessened. It's not that I'm not still hopeful, there's just something about Catie's cancer that play games with my mind. I've talked with some of my fellow cancer moms about this and they've assured me that they understand the mind game well. For me, it's being uneasy to think too far into the future... to be so bold as to dream about the end of treatment brings thoughts about all that could happen in the next 6 months, or after treatment ends. I'm told that the end of treatment is as (if not more) terrifying than the start of treatment b/c you're no longer ACTIVELY fighting. I know that God has gone there ahead of us and has made a way. It helps knowing that He is there ahead of us in the unknown.

The mind game is funny and affects different folks in different ways. I don't buy Catie's clothes for the next year at the end of the season any more. I don't want to "count my chickens before they hatch". Another cancer mom I know stocks up for her son b/c she's determined he's going to be there to wear them. It's funny (maybe the wrong adjective) to me how we deal with similar circumstances in completely different ways. Just our different ways of dealing with "the game."

The mind games for me are worst right before scans. I notice every wobble as Catie walks, every rub of the head, or funny eye movement. I know I'm not the only who does this, so it really helps to have all these other moms to remind me they do it to!

All that said... I continue to dream about long hair, learning to french braid, and watching Catie continue to succeed. Tonight we went out to dinner with friends. It's just been in the last 6-8 weeks that Catie's talking has taken off. Tonight as she sat in the back seat with her buddy Bailee and her "Aunt Lisy" I couldn't help but grin as I listened to the conversation behind me. It was just like it should be, a couple of good friends chatting with one of the people they love most in the world. Lisa had to answer the "why?" question a gazillion times from both girls and I just grinned as I listened. I hope that as Catie grows and I get older I don't lose the appreciation for the "little things" that I have gained. Kids having a chance to just be kids is something I am so thankful for. I hope I never forget what a blessing it is.

Ok, enough rambling... I originally just planned to brag on Catie's white count. =)

Thanks for continuing to pray. We have a clinic visit next week (along with Catie's 4 therapies) and we head to Atlanta for inpatient chemo #20 on 4/20. This hospital visit will include kidney and hearing tests. We pray these remain good so that Catie can continue to receive the full dose of chemo.

Take care and enjoy your weekend!

Love to all,
Jenny

Wednesday, April 6, 2005 10:00 AM CDT

NEW PICTURES ADDED!! (Sorry we've been a little picture crazy lately!)

Hi all!

Hope this finds you doing well! We're having a good week. Catie is feeling well and enjoying the spring weather. We had a great weekend! We crammed gymnastics, four-wheeling, dominoes, playing outside, and lots more into it. My mom (Catie's Nana) came to visit Sunday and was able to stay until yesterday and that was really nice too.

We've been doing neupogen shots since Thursday. Thank goodness today is the last one! Catie has definitely NOT enjoyed those. She's always been great with her finger sticks at the clinic (rarely even whimpers anymore), but Monday she cried and cried... she even tried to kick sweet Mrs. Edith who was doing it. She has NEVER tried anything like that!!! I really think it's because of the shots... she's just had enough of being stuck this week and I can't blame her.

The good news is the shots are working. Her white count went from 0.9 (and falling) on Wed. to 4.1 on Monday. I was shocked! I hadn't expected it to work that quickly. Her ANC is still borderline, hanging out in the 500s (below 500 is considered critically low). We usually stay below 500 for 2 - 2 1/2 weeks, so being in the 500s is awesome.

It's another gorgeous day, so I think we're headed to the park! This is my favorite time in Savannah (minus the sinus headache)... everything is blooming, it's warm but not sweltering yet... So, we're going to make the most of it.

It's been one of those reflective weeks... no particular reason I don't think, just one of those weeks where you think a lot. I have to admit that for the first time I allowed myself to think about Catie's treatment finishing. It's thrilling and terrifying all at the same time. I know it's still a ways off (7 treatments left -- last treatment scheduled to be October 5) and that a whole lot can happen between now and then to throw us off... but it's close enough that I actually allowed myself to think about it. Catie is 30 months old and has been getting chemo for 18 months... She been on chemo longer that she's been off of it. I wonder what she'll be like when we're not pumping toxins into her body every month. I allowed myself to daydream about her hair growing in, about barettes and braids and ponytails. Who knows what she'll look like with hair... She's NEVER had it!!!!! There's a definite feeling of safety (in some ways and to some extent) while Catie's still on chemo, but it was nice to daydream a little. I hope and pray we can finish her protocol without any complications and that the cancer is gone and never returns.

Thanks for checking in on us and for your prayers.
Love to all,
Jenny

Thursday, March 31, 2005 9:04 AM CST

NEW PICTURES ADDED FRIDAY PM

Hi all!

We're doing well and loving the spring weather. It's been in the low 80's for 2 days now. The azaleas (sp?) are blooming, the birds are chirping, and it's just beautiful here. I love spring!

We went to the clinic yesterday for vincristine (chemo) and counts. I was surprised to find how quickly her counts have fallen this round. Her white count is already down to 0.9 and platelets were down to 99. This isn't horribly low, but Catie's platelets have stayed above 100 until the last 3 rounds or so. Her counts will continue dropping through the first to middle of next week. We're starting neupogen (shots) today in hopes of bringing her white count up more quickly this time. Please play for her protection from infection.

Right now Catie is cleaning her baby's crickets (what Catie calls her port) with an alcohol swab. Our pretend play is a bit different from the average household. As she cleans, she says "no hurt baby." We always remind her of that before her port is accessed. Thank goodness for magic cream.

Gotta run, busy day today...

Love to you all,
Jenny

Sunday, March 27, 2005 9:14 PM CST

Tuesday PM, 3/29
Heaven has another helper. Coulter Hampton's earthly journey ended last night. He is now healthy and running the streets of Heaven, but leaves behind mom and dad and a brother and sister. Please pray for his parents as they begin this journey that no parent should have to take, and for his siblings as they try to grasp all that has happened. His website is the same as Catie's, just type "coulter" instead of "catie."

Clinic visit tomorrow. We'll update then.

NEW PICTURES POSTED SUNDAY 3/27

If you haven't checked out Kendrie's site since she updated on Saturday, you really should go visit it (same address as Catie's, just type "kendrie" instead of "catie." It is absolutely hysterical!!!!!


Easter has always been a special day in my family. Growing up, my sister and I often had matching dresses that my Granny made... we understood the meaning of Easter, the risen Christ, from an early age... I remember Easter lilies adorning the church and treasures from the Easter bunny... This year, however, Easter meant even more.

It began with a sleepy Catie plundering through her goodies from the good bunny... crazy running around trying to get all 3 of us ready and out the door on time (we ended up running a little late), battling the monsoon that invaded the southeast overnight, arriving at church and sneaking up to the balcony (away from the crowd as counts are starting to drop)...

An interjection here... Church has always been important to me. I grew up a preacher's kid and we were there anytime the doors were open. I have wonderful memories growing up in congregations full of love and compassion... Since Catie's diagnosis, we haven't been able to attend regularly. Her counts are often too low. When they are good, it's usually close to a treatment, or they're about to fall. There are illnesses that are contagious before symptoms are evident and we just can't risk her getting sick.

So, that said... a trip to church with Catie is special and not something we've been able to do very often... It's usually an adventure as well, b/c we're not brave enough to put her in the nursery for worry of the germies... However, the times I've been since she has been sick have been meaningful. At the beginning of her journey, I usually couldn't sing through a song without tearing up. There is something about music that speaks to my soul and tears everything else away.

We entered just in time to sing some Easter favorites... "Christ the Lord is Risen Today" and "Up from the Grave He Arose." I'm not sure at what point it hit me that this Easter felt different, but I'm pretty sure it was during the singing of one of those songs... somewhere among the words "Where oh death is now thy sting?" and "He lives forever with His saints to reign." His saints to reign... I don't know how you become a saint, but that made me think of Carter and Maddy and Hayley and Claire and Stephanie and Cheyenne and Shelby and Bailey and Paisley and all the others who lost their earthly battle with childhood cancer and their families ... Without today, there would be no hope of a reunion... I cannot begin to understand the depth fo the pain these familiies go through. As I thought of these sweet children, some of whom we came to know on 3 North... as I thought of their families... this Easter took on a whole new meaning. I've known my whole life, at least as long as I can remember, that this day meant that, but I had never felt it... I have been very blessed in my life to have lost very few people thus far... 3 of my grandparents are stll living... This year alone I have seen more death than in all of my 28 years and I do not understand why children have to suffer... However, this year Easter means more. I know that the pain is still so very present and very real for all of these famlies. I know that it will never go away. I pray the hope of Easter is helpful in its hope. You have been on my mind throughout the day. We still pray for you all and will continue to do so.

Part of the most difficult part of this journey has been learning to understand that God does not always answer our prayers in the way that we want. That wasn't such a big deal to me before... But when it's your child's life your praying for and begging for... it's a little different. Your prayers are more earnest. The thought of the answer to your prayer being no, or the thought of it being a heavenly instead of an earthly healing is unimaginable. However, whatever the answer... today offers hope. Though the answer may be different than what is prayed for, there is the promise of hope in Him.

Easter also meant more the year after we had Catie. As I looked at her, I pondered how God could love us so much that He CHOSE to give His son... This year it means so much more... We have been fighting so hard to keep Catie here... God CHOSE to sacrifice His son... It's a love I can hardly fathom.

We closed the service by singing "Because He Lives." Always a favorite of mine, but even more so now. I don't know what the future holds for Catie, for any of us. But He knows, and somehow that helps...

"Because He lives, I can face tomorrow; because He lives, all fear is gone; because I know He holds the future, and life is worth the living just because He lives."

I know that this entry is disjointed, it's just so very hard to capture the feelings of today in words. The rest of the day was filled with lots of eating, family, hunting Easter eggs, squeals of happiness... We are so thankful to have this day to celebrate.


A few random thoughts to this already too long entry...

*As the kids went down for the children's sermon today (we had Catie quarantined in the balcony still) I whispered to Catie that they were talking about Jesus. She looked at me, and then in the sweet innocent way that only a child could, said, "I want see Jesus." She said it again and again (a little louder each time). It was absolutely sincere and beautiful. It wasn't long after this that she had had her fill of being still and quiet. Tre' and I took shifts with her outside.

*Mental note... teach Catie to use the egg dipper before Easter next year so she doesn't have to use her hands!! Seep the photo album!

*Catie's latest love is "mud-bogging." Now, mud-bogging for her is riding through glorified puddles, but man does she love it!! She is such a fun mix of girly girl and country girl. The way I finally got her out of her Easter dress tonight (which I was convinced she was going to wear for the remainder of the week b/c she loved it so much) was with a promise of a 4 wheeler ride with her daddy.


She's doing wonderfully and feeling well. We head to the clinic on Wednesday for chemo (just vincristine), counts, and a physical exam. So far so good with the blisters. No more have shown up which makes me feel like they are probably from the tape. We continue to watch her closely.

We hope you all are well and that your weekend was wonderful.

Love,
Jenny

Friday, March 25, 2005 8:42 PM CST

Hi all!
Catie has officially finished round 19 of her protocol. That means there are 7 remaining. Holy cow... I know it's still a good 6-7 months, but the end is seeming closer and closer. I know that anything could happen in the months to come, and I'm not wishing the next 6 months away -- that's one thing we've learned, to try to live more in the moment instead of always wishing for the next-- but it is nice to see how far Catie has come.

She is doing well and bouncing back from this round already. It amazes me how much easier this round is than the last round. I am so grateful the easier round is the one she gets more frequently. Her sleep schedule is off a bit (she had a blast playing with her daddy from 4am to 7am this morning), so she really crashed to night. It's just tough for her coming off those meds to get right back to a normal schedule.

We do have a specific prayer request right now. Catie has a couple of small blisters on her chest. We're not sure what they are and we're hoping that they're from the tape or iv line rubbing against her when she was accessed in the hospital. The other possibility is something viral, possibly shingles. This wouldn't be great as her counts will be taking a dive in the coming days. We're not doing anything at this point b/c we're not sure what it is. We came home from a quick trip to the clinic with instructions to wash her very closely and to call if any more blisters appear or if she develops a fever. If this happens we'll be inpatient for a while getting iv meds. Please pray for Catie's protection, comfort, and that the medicines they are using are effective...

That's the update on us...

This week at Scottish Rite we learned that there were 8 kids diagnosed over the weekend... 8 new diagnosis... how on earth can that be? Please pray for these families. I was able to meet one family and I have web address for two of them. (www.caringbridge.org/ga/trentonsjourney and www.caringbridge.org/ga/hannah ) I have no doubt they could use your encouragement and prayers. The first days are so very, very hard.

This was one of those trips that makes me reflective. I don't know if it was my time with Kirk and Natalie (Maddy's parents) Wed. night, or all the new diagnosis, or just the fact that we're almost to treatment #20... I want to write more about this week, but I'll wait until I'm not so tired so that I can write intelligibly about it.

Please continue to pray for all these kids and families. If you didn't get the links you needed added to your favorites, e-mail me and let me know who you need. I can send them to you.

Take care,
Love,
the sleepy Wilkins crew

Friday, March 25, 2005 9:12 AM CST

We're home. Lots to right, but I need to get off the computer as a storm is approaching. I'll write more later.

One quick thing. Catie and I arrived home to discover that my hubby had bought us a 4 WHEELER!!!!!!! I confess, I am a tomboy and country girl at heart. No gift could have made me any happier... Boy did we have fun last night!!! Lots of good riding!!

Love to all,
Jenny

Wednesday, March 23, 2005 5:33 PM

Hi all!

Quick update. We're here. We're still at the clinic waiting on a room. That's ok though b/c at first we thought we weren't going to get a room on 3North (our normal floor). I realized how attached I've become to our nurses there when I found out they might not have a room. I knew we'd be fine whereever though (and thought it might be nice to go visit some of our old favorites on the 1st floor). But, Mrs. Mandy worked some magic for us and it looks like we're headed over there when the room comes open. Catie has already gotten her chemo and is 1/2 way through her big Mesna (rescue drug for her bladder). That's awesome b/c her baby mesnas start earlier and that means we get more sleep tonight (between diaper changes every 2 hours at least =) ). We're looking forward to visiting with Kirk and Natalie (Maddy's parents) and Aunt Nik Nik will be here soon.

We'll update more later,
Love to all,
Jenny

Sunday 3/20 PM

Hi all!
Hope this finds you doing well and gearing up for a good week. Just a quick note to let you know that Caringbridge has asked that links be removed from websites. We have until 3/24 to remove the links. I will leave them up until then, and I encourage you to add the kids you've been following to your favorites list. Your encouragement and prayers help on this journey and I want you to still be able to offer this to all of the families. So take a few moments to add the links to your favorites. If you don't get it done by the 24th, e-mail me and I can send you the links you want.

Tomorrow is a clinic visit (in the PM I think) and (so long as her counts are up from last week) we will head to Atlanta on Tuesday. Catie has a clinic appt. there on Wed. AM and we will go inpatient that afternoon (so long as a room is available). We hope to be headed home and sleeping in our own beds by Thursday night.

More to write, but there's too much to get done tonight.

Please pray for John Michael as he has a bone marrow test tomorrow. For leukemia kids, this is kind of like our MRI. Please pray that he remains in remission and continues to grow strong in preparation for transplant.
Love to all,
Jenny

Friday, 3/17 AM
NEW PICTURES ADDED FRIDAY 3/18

Ok, first things first!!

Many apologies to all the folks I've been meaning to call since Catie's scans! We got home Wed. night and Thursday was a little crazy.

Scans-- The MRI is stable. There are no changes except for a little aging of the blood where the clots and bleeds were. The tumor site is unchanged. The spot we're watching is still there (it's just under a cm) and we continue to pray that it's harmless scar tissue. We are VERY thankful for stable and continue to look forward to the day when we hear CLEAR!!!

Catie is doing AWESOME!! I wish I could bottle her energy and drink it!!! Yesterday we spent the day in Savannah celebrating St. Patrick's Day. For those who don't know, St. Patty's Day shuts EVERYTHING down in Savannah! It is one big party (supposedly the 2nd largest St. Patty's celebration in the nation)-- think Mardi Gras Savannah style! We always go to Tre's grandmother's house (with about 50-60 other people) for green grits and a huge spread of delicious food. It's always a good time with lots of laughs and catching up. We went down to the parade for an hour or so (it lasts 3-4 hours) and then came back to Mamanon's b/c the weather was cold and yucky. Catie enjoyed dancing to the band music, waving at the floats and seeing the clowns. Her favorite things of the day, by far, were Snowy (see picture above) and Baby Allie that joined us for the day. We came home, had a steak dinner with friends, and then crashed! What a great (normal) day!! I could really get used to this.

Tomorrow we hope to go to the St. Baldrick's Festivities in Savannah. Folks volunteer to have their head shaved to raise funds for kid's cancers. Will O. Got to shave Dr. Rapkin's head in Atlanta yesterday!!! Way to go Will!

Speaking of raising funds... the final tally for the golf tournament is in, and the total is $8,500. We are very pleased with this amount (honestly, I was hoping for $5,000 this year)!!!! We are already planning for next year. A HUGE thanks to James Dasher and his family, Black Creek Golf Club, and Sign-A-Rama! Sign-A-Rama donated signs for the sponsors and they really did a jam up job!! It saved us a huge amount of money as well! The tournament would have raised about 20 percent less money if not for their generosity! Thanks to everyone who came out and helped (you know who you are) and to all who contributed. Don't worry, we'll be calling on you again next year!! haha

Thanks so much for your prayers and your encouragement, this week especially with scans and all! You have no idea how much it means.

Love to all,
Jenny

Wednesday, March 16, 2005 3:13 PM CST

All is well. Scan is stable - will update more later.

Tuesday, March 15, 2005 9:22 PM CST

Hi all!

Just a quick update...

We decided to wait to leave until tomorrow morning early. So we'll head out and report to MRI at 11:00. The actual scan is at noon. I sure hope they're running on schedule b/c Catie can't eat since she has to be sedated. This should be an interesting car ride.

We meet with Dr. Mazewski at 2:30. We should be able to get a preliminary report on her scan by tomorrow night at least. If we're EXTREMELY lucky, maybe we'll even get them at our appt. tomorrow. Dr. "Zeski" is wonderful about not making us wait for scan results. She knows how stressful those times are for families waiting on results.

Scan weeks are interesting. I go back and forth from looking at her and being amazed at how ABSOLUTELY AWESOME she looks, to reminding myself that "you NEVER know." That's one thing I miss about life before cancer... that safe feeling... Only I didn't know I missed it until it was gone. However, not having it does make me more appreciative of things.

We are ever so grateful for any extra prayers you can send Catie's way tomorrow. Feel free to send some for mom and dad too. =) Our prayer is for stable, improved, or CLEAR!! WE continue to pray for Catie's complete earthly healing, protection from infection, and all of our other buddies.

We'll update as soon as we have news.

Love to all,
Jenny

Sunday, March 13, 2005 9:02 PM CST

MRI IS WEDNESDAY, MARCH 16 @ NOON

Hi All,

Whew! We are exhausted. Tre' and Catie are already sound asleep. This weekend was so wonderfully normal that wish we could do it all over again.

Friday night was a quiet night at home, just the 3 of us. We grilled some burgers and watched part of The Lion King and just enjoyed each other.

Saturday was a FULL day that started with some fun gymnastics time! Back flips, balance beams, jumping on the trampoline... hard work and lots of fun. We then hooked up w/ Catie's buddy Bailee and her mom and headed to the Spring Fling at Ebenezer. It was great to see folks and visit and the weather was windy, but beautiful. A picnic at Sonic and playing at Bailee's house made for a tired Catie who crashed hard for a nap. We rounded out the day riding 4 wheelers with our neighbors and then compiling the contents of our pantries and freezers for a great dinner.

Today was a great afternoon of shopping in Hilton Head. We enjoyed the beautiful weather with some ice cream and a tall glass of lemonade. At home we rode more with the neighbors and then grilled steaks.

Catie had a blast this weekend. She was so full of life today -- walking everywhere, chattering, eating like a horse (have I mentioned that she gained 2 pounds in the last week?)... She absolutely WORE ME OUT tonight chasing her around!! It was wonderful!!!!!

She also had 2 "firsts" this weekend. Her first skinned chin (actually her first skinned anything) and her first (and second) splinter(s). Sometimes I feel like us cancer parents (or at least this cancer mom) have kind of a twisted appreciation for "normal" childhood rites of passage, even the not so fun ones like splinters and skinned chins. Maybe it's b/c I could "fix" it with a needle and some neosporin and a Band-aid... I don't know. But none the less, Catie survived (though if you had been near our house while we were getting the splinter out, you would probably have reported me for child torture). She handles port accesses and finger sticks WAY better than splinter removal!! Guess I should have pulled out the magic cream!! =)

We're praying that Wednesday brings great news our way so that next weekend, and many weekends to come can just as normal as this one was.

Thank you for your prayers and for all the encouragement you've been offering in the guestbook! It means more than you will ever know!

Love to all,
Jenny

Wednesday, March 9, 2005 9:46 PM CST

NEW PICTURES ADDED

Today was a really nice day. It started with a phone call from my college roommate who was holding her 12 hour old 2nd baby boy. It was amazing to hear her pure joy as she described him to me... What a great way to start the day. Sharing a pop tart with Catie and then heading out for a brisk walk with our neighbor helped get us up and moving. Well... me at least. Catie was ready for a nap as soon as we got back from our walk. She likes to nap in the last morning. Early in the chemo cycle she'll crash again in the afternoon.

Catie has continued to feel better each day. Monday was kind of a crash day for her... She didn't feel bad, she just needed some extra rest after a busy weekend and still recovering from chemo. Today she was more independent than she has been since her last round. She played some by herself and let me get some house cleaning done. TRUST ME when I tell you that was a very good thing-- the house needed it! She was in no mood for a nap this afternoon, but I did convince her to rest and watch a little of The Lion King. It is so good to see her feeling well and acting like herself.

This evening Catie had gymnastics. She was so excited to go and had a blast when she got there. I promise you that in the 30 minutes before we left to go, she said "want to go to gymnastics" 100 times! At the gym she actually jumped and got her feet off the ground at one point. She has NEVER done this -- it takes more muscle than you realize. She didn't go very far off the ground, and only did it once, but it's a start. She did a forward roll (and loved it) and was able to hang from the bar without help (see the photo album for proof). I was shocked that she could support her body weight on her own like that, but she did it!!

We ended the evening with dinner with good friends at Zaxby's. It seemed like such a "normal" night and it was quite nice.

Catie has been eating EXTREMELY well for the last week or so! She has been gobbling down lots of food (making up for those days she didn't eat I guess). At dinner tonight, her buddy Bailee kept wanting her to play and Catie would say "I'm STILL eating!!" Normally at the first chance she would be jumping down to play instead of eat. Why do we always feel better when our kids eat well?

So... We are doing well. We go to the clinic tomorrow and I expect her counts will be low. That's normal at this point. It's not slowing her down though!! She's doing great.

BIG PRAYERS FOR SCANS ON WED., MARCH 16!

Love to all,
Jenny

Sunday, March 6, 2005 9:36 AM CST

NEW PICTURES ADDED 3/7/05

MRI IS MARCH 16

Good morning all!

We hope this finds you doing well. We are great!! Catie has finally perked up and it has done all 3 of us good!! It's hard not to worry when she acts so tired and just doesn't feel well. Especially when it lasts for 10 days straight and you just can't pinpoint what the cause is. It seems this round just knocked her big time. With a cold coming on right after chemo, her little body was just worn out. Now she's back to her chatty self again. Talking in phrases and sentences -- walking around everywhere. Up until last night she had only been walking holding on to our hand -- much different than right before the last round when she was Little Miss Independent going everywhere on her own. I breathed a big sigh of relief last night as I watch our Catie reemerge.

Yesterday was a great day all around. It was the day of the golf tournament, and I must say that we feel it was quite a success. We never could have pulled it off without help from dozens of people. James Dasher, Stillhouse Streams, Sign-a-Rama, Ratchford's Market, a crew from Ebenezer who did everything from making brownies and donating money to showing up and spending hours helping out yesterday. A big thanks to Black Creek for their generosity in letting us hold the golf tournament. We don't have an exact tally yet, but we think the total is close to $8000 raised. We're thrilled with that number as we were hoping for $5000 for our first year. We're already planning for next year and hope to raise even more money.

We made signs displaying the pictures and stories of about 20 kids we've met along the way who have fought their own battles against cancer. Some are still fighting like Catie, some have finished their treatment and are doing well, some have finished their battle and are now heaven's little helpers. We really wanted to the folks participating in the tournament to know WHY they were playing. I think the signs did a great job of putting the focus on the kids. We want to not only raise money, but awareness.

The sun was shining, it warmed up nicely, the wind was blowing. All in all it was a really great day. We are so thankful for all who came out and helped and participated! Thanks so very, very much!

Love to all,
Jenny

Thursday, March 3, 2005 10:18 PM CST

Hi all!

We hope this finds you doing well. We have been busy this week getting things ready for the golf tournament this weekend. We still have room for about 10 teams if you're interested. Just e-mail or call and let me know.

Tomorrow will be another busy day. There are some last minute details to take care of. We'll start our day at the clinic for labwork. Catie is still dragging. She hasn't been drinking well but is still hydrated (still has tears). She is eating, which is good, but covers her mouth when we try to get her to drink. She is asking for popsicles often as well, so I wonder if there are some sores in her throat.

Tonight I called the after hours number b/c she was really dragging and I was wondering if it my be b/c she is a little dry. Since she has tears, we are ok till tomorrow. Dr. Gonzalez said her counts could have just really taken a dive in the last couple of days, she could still be dragging from chemo last week since the toxins are continuing to build up in her system w/ each round, or her potassium or magnesium levels could be off. We can check all of those things in the morning at her appointment. I hope that there is an easy fix and that she can get back to feeling like herself soon. She'll perk up for a little while, but a lot of the time she is just kind of whiny and wants to be held. No problem with the extra snuggles we're getting, we're just ready to see her feeling more like herself.

Apologies to anyone who I need to call or e-mail back, it's just been busy with the tournament and with Catie not feeling well. I'll catch up soon, I promise.

Chandler has big scans tomorrow (Friday), so please keep him in your prayers. Speaking of scans, Catie's next MRI is in less than 2 weeks on March 16. Praying already for stable, improved, or CLEAR!

Love to all,
Jenny

P.S. MY BROTHER AND BROTHER-IN-LAW RETURNED TO THE STATES TODAY AFTER SPENDING 2 MONTHS WORKING IN TSUNAMI-RAVAGED PARTS OF ASIA. WE'RE SO GRATEFUL FOR THE WORK THEY HAVE DONE AND THAT THEY HAVE RETURNED HOME SAFE AND SOUND. lOVE YOU GUYS!

Tuesday, March 1, 2005 9:43 PM CST

I continue to be so very thankful for the people God has placed in our lives to help us walk this road. Friends who are there every step of the way, to listen and to talk, to laugh and to cry. Thanks to all the people, the ones we know well, and the ones who we don't know as well, who have helped, and continue to help us on this journey.

Catie is still kind of puny. She's got a pretty good cold, so we've been going through lots of tissues and watching MORE Mary Poppins!!! =) I think I can quote the entire movie! We went to the clinic today and her counts were still ok. They should be pretty low by the weekend, so we're going to check back in on Friday. We're praying she stays fever free.

Jack W. and Chandler have important scans this week. Keep them in your prayers as well.

Still have room if you want to play in the golf tournament. Just let me know.

Love to all,
Jenny

Monday, February 28, 2005 8:29 PM CST

Hope this finds you all doing well. Things here are quiet and good.

It's beginning to look as if day 3 after making it home from chemo is Catie's day to crash. She is on such strong nausea meds while she's in the hospital that she basically sleeps the whole time she's there. She'll be awake a couple of hours at a time a couple of times a day, but for the most part she sleeps (except when she gets sick). When she is awake, she is not "all there." She is sort of in a daze. Trust me, she can still let us know what she wants, but sometimes you have to say her name a couple of times to get her attention, etc. She's content to just lay there.

I won't lie and tell you last week was an easy treatment. With all the nausea meds, she still got sick (not really throwing up, but dry heaving) several times. She would look up at me, red-faced, eyes watering... I could feel her skin all clammy and I could feel her shivering just a little. We would look at each other, GaGa and I would try to comfort her... rubbing her back, talking to her, singing, wiping her face and then her tongue to get the yucky off... and when the nausea passed, she would fall back on the bed, exhausted and reach for my ear (her tell tale sign that she's tired). We got glimpses of her fighting spirit while we were inpatient (her perking up when Mary Grace showed up, wanting to go outside when she heard some noise outside her door... eating and starting to perk up on Friday afternoon). But, thank goodness, it's not often that I've seen her feel that yucky.

Ok, that's the bad... Here's the good... **THANK GOODNESS we have the nausea meds we do. I CANNOT IMAGINE what she would have felt like last week if meds like Zofran, Phenergan, and Benadryl didn't exist. **By the time we got home Friday night she was feeling much, much better. She even asked for roasted peanuts when we stopped by our neighbor's house. **Home health companies exist, so we could come home on Friday instead of waiting until her fluid intake was great. **She has learned to hit "the bucket" (or the jelly bean as we call it). **The nurses are phenomenal!!!! They listen to the parents and ask what we think is best (give a med a little early, etc...) **The chemo she received exists and gives her a good, fighting chance. **There was lots of good cuddle and snuggle time to watch movies and be close.

At the beginning of this journey we call cancer, I learned that in the hospital I have to go into my "mode," my "this is what we have to do to get Catie where we want her" mode. In some ways it seems like you detach, but really you don't. You're fully aware of everything, but you realize that the yucky, hard stuff is part of getting to the healthy kid, good stuff. I remember when we used to go in for IVs, before Catie had a port... I would dread it, it was horrible... and Catie was too young for me to explain what we were doing to her. But I would go in "my mode" and Tre' and I would go in and hold her down till we had a line. Boy... I don't miss those days at all. So, last week, I spent some time in my mode... knowing that the yucky she was feeling was part of the necessary to get her to the healthy good stuff.

So anyway... the 3rd day after coming home, that's where I started this entry. (Boy, did I get off track or what?) When we come home, I always try to make sure we end the benadryl/phenergan cocktail with a nighttime dose. If you had been at our house this weekend, you would understand why. This was one wired kid!! She woke up at 6:00 Saturday morning and went full blast until 10:30 that night and took only an hour and a half nap. The really crazy thing was her balance was off (it takes her a while to bounce back physically -- her weakness/tiredness always shows up in her balance first) and she couldn't understand why her body wasn't cooperating the way it was before this round of chemo. Basically the same was true on Sunday, only she slept a little later. So today was her day to crash. She was a momma's girl most of the day. Lots of snuggling, 2 good naps, watching Mary Poppins for the 4,000th time, more snuggling... She perked up for a dinner out tonight, but crashed early when we came home. Her walking was MUCH better this afternoon, still not all the way back to normal, but much better.


It always throws me for a loop when she "crashes" like this after being wide open for 2 days in a row. So I remind myself that she just got tough chemo, she's had crazy drugs racing through her system, she hasn't been on a schedule in almost a week now, her body is just out of whack. That would be MORE enough reason for ME to crash, and I'm pushing 30... she's only 2!!!! So I remind myself that this is "completely normal" at least in the world of childhood cancer. And then I remind myself that we have it so much easier than so many people. If you want to offer some encouragement to folks who are having a really rough time right now, check the following kids' links above: Coulter, Caroline, Ethan, Martin, Gwen, Ben B., Hayley, Maddy, Shelby, Alex, Carter, Cheyenne...

Prayers for our Catie and all the kids and families above are always welcome. We are good tonight. Very good. Very blessed. Very grateful.

Take care, and know you're loved,
Jenny

Friday, February 25, 2005 10:39 PM CST

NEW PICTURES ADDED -- The one above was taken just before we left the hospital today.

Thanks to home health care, we are home!! Catie is hooked up to fluids and is getting IV nausea meds every 3 hours. She was able to eat some starting this afternoon, so we will drop one after the midnight dose and see how she does with just zofran. She should do well with that as she is getting farther and farther away from that nasty cisplatin. We are grateful to be home and grateful that only 8 rounds remain in her protocol!!! (and only 2 of those are this yucky round!!).

Catie is glad to be home and so am I! I think Tre' was glad to get his girls back home too. Catie is snuggling with him as we speak!

Just a short entry tonight as I'm going to do her meds real quick and then head to bed. We'll update more later this weekend.

We are accepting sponsors for the golf tournament through Monday (Tuesday at the ABSOLUTE latest). We can continue to get pictures of kids through Thursday. The kids' signs are turning out so cute!! You can even e-mail me a picture if you want and I'll print it out for the sign. Also there is still a lot of room for teams in the tournament! Sign up, play, and have fun, all for a good cause!

Please hold Ben Bowen's family in your prayers. His long, difficult, and painful journey ended today. He is enjoying a body fully restored as he runs down the streets of Heaven tonight. We are praying for his family.

Thanks for checking on us,
Jenny

Friday, February 25, 2005 AM

Hi all!
We have one puny girl! We hope to go home today, but I have a feeling she's going to have to be willling to eat something before we get to go. We managed to talk her into a popsicle at about 4 AM this morning and she actually kept that down. She's been very nauseous, but all that's in her is stomach juices. This morning we tried to get her to eat another popsicle, but she won't even let me touch her mouth with it. Her mouth is dry and she seems to want to eat, but just can't bring herself to do it. Yesterday I brought in a rice krispie treat for her. She said she wanted it, so we opened it and gave it to her. She wouldn't take a bite, but she wouldn't let it go either. She ended up holding onto it for about an hour before I finally got her to let me "save" it for her.

She'll get chemo again at 11:15. If they let us leave, we hope to be on the road by 2:00. We should know more when the doctors make rounds.

I don't know how you transplant super parents do this for such long periods of time with the kiddos feeling so yucky.

She's resting now, and that's the best way to go at the moment. We've gotten lots of good snuggle time in and we've introduced her to Bambi and The Little Mermaid! This is a welcome change from Elmo, Barney, and even Blue's Clues!!! haha!

Hugs to all! We'll update when we know what we're doing. We're good, just ready for her to feel like herself!
Jenny


Thursday Afternoon
Hi all!

Catie has received the first chemo of this round --that's the YUCKY drug. She's been sick a few times and is not in the mood to get down and run around, but she is doing well. Lot's of snuggling watching Elmo and Disney movies! Today's chemo will start in about 45 min. following her Ben./Phen. nausea cocktail. This should bring on a good nap which is good b/c she has to be hooked up to a blood pressure cuff while this chemo runs. Thanks for your continued prayers.

A note about the golf tournament... It's only 9 days away... AAAAAAAAAGGGGGGGGGGGGHHHHHHHHHH!!! We still need folks to sign up to play and we're taking sponsors through Sunday night/Monday morning. Please consider sponsoring a hole!! A big thanks to those who have already signed on with us. We'll continue taking pictures of kids up through next Thursday! We've been getting some cute ones in here lately!!

I need to go check on Catie. Thanks for checking in on us...
Lots of love,
Jenny

Friday, February 25, 2005 AM

Hi all!
We have one puny girl! We hope to go home today, but I have a feeling she's going to have to be willling to eat something before we get to go. We managed to talk her into a popsicle at about 4 AM this morning and she actually kept that down. She's been very nauseous, but all that's in her is stomach juices. This morning we tried to get her to eat another popsicle, but she won't even let me touch her mouth with it. Her mouth is dry and she seems to want to eat, but just can't bring herself to do it. Yesterday I brought in a rice krispie treat for her. She said she wanted it, so we opened it and gave it to her. She wouldn't take a bite, but she wouldn't let it go either. She ended up holding onto it for about an hour before I finally got her to let me "save" it for her.

She'll get chemo again at 11:15. If they let us leave, we hope to be on the road by 2:00. We should know more when the doctors make rounds.

I don't know how you transplant super parents do this for such long periods of time with the kiddos feeling so yucky.

She's resting now, and that's the best way to go at the moment. We've gotten lots of good snuggle time in and we've introduced her to Bambi and The Little Mermaid! This is a welcome change from Elmo, Barney, and even Blue's Clues!!! haha!

Hugs to all! We'll update when we know what we're doing. We're good, just ready for her to feel like herself!
Jenny


Thursday Afternoon
Hi all!

Catie has received the first chemo of this round --that's the YUCKY drug. She's been sick a few times and is not in the mood to get down and run around, but she is doing well. Lot's of snuggling watching Elmo and Disney movies! Today's chemo will start in about 45 min. following her Ben./Phen. nausea cocktail. This should bring on a good nap which is good b/c she has to be hooked up to a blood pressure cuff while this chemo runs. Thanks for your continued prayers.

A note about the golf tournament... It's only 9 days away... AAAAAAAAAGGGGGGGGGGGGHHHHHHHHHH!!! We still need folks to sign up to play and we're taking sponsors through Sunday night/Monday morning. Please consider sponsoring a hole!! A big thanks to those who have already signed on with us. We'll continue taking pictures of kids up through next Thursday! We've been getting some cute ones in here lately!!

I need to go check on Catie. Thanks for checking in on us...
Lots of love,
Jenny

Wednesday, February 23, 2005 3:16 PM CST

We are at the clinic and doing well! Catie is getting fluids and as soon as her room is clean we'll head across the street to the hospital to start chemo. We'll update later on... just wanted everyone to know everything is going well.
Love to all,
Jenny

Sunday, February 20, 2005 10:05 AM CST

Sunday PM
We are at the Ronald McDonald House safe and sound! Catie had a good time tonight visiting with Aunt NikNik and Grandpa Mike. She and Mrs. Carmen are snoozing soundly upstairs. I'm about to join them as we have an early morning wake up call tomorrow.

I've added a new link for another brave fighter, John Michael. He attends Ebenezer Middle School and was recently diagnosed with AML. He has just begun his 2nd round of chemo. Please stop by and visit his site and offer him and his family encouragement in their guestbook. Let them know of your prayers.

Thanks,
Jenny

Sunday AM
A good night's sleep is a wonderful thing! We are up (well, Catie's napping), we've had yummy biscuits, good snuggle time as a family watching a bit of Mary Poppins... We'll be on our way shortly.

Hugs to all,
Jenny

Saturday, February 19, 2005 9:59 PM CST

Tonight is one of those "I hate cancer nights..." No particular reason -- Catie is doing great! There are just way too many sick kids fighting way too hard.

I think I'm just dreading this week b/c this is the rough treatment. I know that lots of other kids have been through lots harder stuff... several are going through transplant right now... I know there are lots of parents out there who wish there kid was still here with a chance to fight.

This is just one of those nights that I wish Catie had been dealt an easier hand. Don't get me wrong-- I know it could be worse... I know that going in for chemo means we're one step closer to finishing our protocol... and I'd keep taking her for more treatments after she finished her protocol if that's what the doctors recommended... We've just had some amazingly NORMAL days and it sure has been nice!!!! We want lots more.

And to get to lots more, Catie gets some yucky ones next week... Well worth it in the long run!

************************************************************

OK, pity party OVER!!!!! Sometimes you just have to vent. Thanks for letting me (not that you had much choice!! haha!).

I still have to pack, but man are there a lot of clean clothes in my house!! Tomorrow will be busy -- packing, finishing up last minute things. It will be nice to see friends at the Ronald McD House tomorrow! Kari always takes such good care of us. We're looking forward to a visit to the Children's Museum too! Catie loves that place (truth told, so do I!) and it will be her first visit since she learned to walk! That will definitely be a treat -- and GaGa's first visit there!

Please continue to hold Catie and all the other kids close in your prayers. They make such a difference!
Love,
Jenny

Friday, February 18, 2005 7:39 PM CST

Hi all!!

What a busy, busy week we've had!! It's definitely been a good busy, so we'll take it!

Catie's counts bounced back really well this week! That gave us a chance to get out of the house a little more. I continue to be amazed at how well her body bounces back each time we beat it down with chemo.

We've been doing lots to get ready for the golf tournament. We made signs for the kids we had pictures of so far, and they turned out great!!!! It's still not too late to send us a picture, we want more to have at the tourney. We've also been busy trying to get more money in. It's still not too late to donate money or sponsor a hole either!! We'll take sponsors up through the 28th of February b/c that's when everything has to be turned in to the nice folks at Sign-A-Rama who are making and donating the signs for us. Thanks so much to everyone who has already donated. We still need folks to play in the tournament as well!

Yesterday we were able to meet Catie's nurse, Amanda, her little girl (Emma) and some new friends at Oatland Island. It's a great little place here in Savannah that is home to lots of great animals. You go on a 2-mile trek through the woods and the marsh (great trails to walk on of course) and see all kinds of animals! It was a gorgeous day and we had an absolute blast. The kids enjoyed the animals and it was jus a great morning. Then we headed home where Catie took a 2 and 1/2 hour nap (very LONG for her!). I might have snuck in a catnap as well!! =) After that we ventured down the road to the neighbor's house and we were on a bug-hunting expedition. Catie got a cute little bughouse for Valentine's Day and she wanted a bug to put in it. Yes, our little prisspot does have a little tomboy shining through. So we dug through the dirt, we looked under logs and pine straw, but let me tell you... February is not the time to go on a bug hunt if you actually want to find bugs. We finally found a grasshopper (a huge one, at that) and it's still in the bug house... I can't convince Catie to let it go!! We ended the day with a dinner out for Chinese with friends. It was an absolutely wonderful day. We were all exhausted though -- I think there was some serious sleeping going on in our house last night.

Today GaGa came over after PT so that I was free to get busy around the house. We're going to be gone all week, so I want to leave the house good and clean. I'm still washing laundrey getting ready to pack tomorrow. Tre' will stay here and hold the fort down for us.

Do keep Catie in your prayers for this yucky round. I dread this one, especially after enjoying such great times this week. But going means it's one more round down.

We had some friends who had some really great news this week. MaryGrace's surgery went EXTREMELY well and the preliminary pathology showed NO remaing cancer!!! Hallelujah!! Chandler also got good news on his bone marrow -- it was clear (I think this is actually last week's news)!! This is a huge answer to prayer. However, continue to hold him close in prayer as they still have another scan of his lungs coming up in a week or too. They need to see if the antibiotic he's been on cleared up the spots they saw on his lungs. Please pray that they look clear.

Caroline and Gwen are just starting the transplant procedure, so remember them in a special way. Coulter is still having a tough time with his transplant.

So many kids... so many tough ones who bring us joy each day!

Take care,
Love from us,
Jenny

Sunday, February 13, 2005 8:22 PM CST

NEW PICTURES ADDED

Hi all!
We hope this finds you doing well! Things here are good. Catie is growing and walking and talking more every day. She is definitely keeping us on our toes!!

We were thrilled with the job that WSAV did with Catie's story on Friday! They also helped us get the word out about the tournament, so that was great too! Part of what we want to do is raise money (of course), but also, we want to raise awareness! There are too many kids battling this wretched disease!

The tournament is only 2 weeks away and things are really starting to roll. We still need hole sponsors and pictures of kids to feature! Thanks to those who have sent stuff already. We also had a piece of great news last week. Sign-a-Rama from Bluffton is going to DONATE sponsor signs for us. They are normally $18 a piece, so this is a huge donation!! Now we can have nice, professional looking signs and not lose any of our profit! A huge thank you to the folks at Sign-A-Rama!!!!!

Healthwise, Catie is good. There are traces of her rash, but it is tons better than last month when her counts were low. The anti-viral med seems to be keeping it in check. She's come down with a cold over the weekend, but still seemed to feel ok today. We're watching her closely for fever. Other than that, things are good. We're talking to her about her dentist appt. next week in Atlanta. I must say, I'm not looking forward to that visit as it is to include a full series of x-rays and a cleaning!!!!! The dentist seemed great though, so I'm hopeful that Catie will do well.

Right now, our schedule looks something like this. This week should be pretty normal, with just a regular clinic visit and her therapies (4 a week). We're also starting a mommy and me gym class at DEENOS. I think she's going to like this, and it should continue to help her increase her strentgth and balance.

We will leave next Sunday for Atlanta. Early Mon. will be the dentist appt. Then we'll have some down time for fun on Mon. afternoon and Tuesday. Wed. morning, Catie has a clinic visit w/ Dr. Claire and then she'll be admitted for chemo. This is the yucky round, so please be in prayer. Our first request is, as always, the destruction of all cancer cells. Please also pray for the protection of her hearing and kidneys as this is the drug that is so toxic.

When I look at how blessed we've been on this journey, I'm amazed. Catie has done SO, SO well (please knock on wood with me). Please pray that she continues to do so and that she will require no more treatment following the completion of her protocol in October. Pray that she will be cancer free and live a long, happy, healthy life for many, many decades.

I need to do some tournament stuff, so I'm off. Prayers of Thanksgiving for the many blessings we receive each day.

Thanks for checking in,
Love,
Jenny

Friday, February 11, 2005 10:51 AM CST

Quick update...

Catie's story will be aired at 6:00 PM on WSAV on Friday, 2/11.

Happy watching!
Jenny

Tuesday, February 8, 2005 9:06 PM CST

Special prayers for Stephanie's family as her 5 year battle came to an end today. May they find comfort and peace.

Prayers for Chandler as they continue to wait on important test results.
________________________________________________________________________________________________________________________

We hope this finds you doing well! Things here are great. Catie has been having fun exploring her independence with her walking skills. Her favorite game right now is chase. She thinks it's so cool that she can walk to get away from us. We've also been enjoying good times outside the last day or 2 b/c the weather has been beautiful here!

We have some exciting things going on here as we get ready for the golf tournament. On Thursday morning a crew from one of the local news stations (WSAV) will be coming out to our house to do an interview. I e-mailed them last week asking if they would be willing to do a story to raise awareness about childhood cancer and give some publicity to the golf tournament. I got a quick response from them and they were interested. They want to meet Catie and interview our family. We're excited to share Catie's story, but more importantly, we want to raise awareness about the need for research for pediatric cancers. The station has also promised a chance to plug our golf tournament. We've also been given some time on a local billboard to get the word out about our need for more sponsors. We're hopeful that the publicity will help us get some more sponsors. We've had lots of people willing to help us out with the tournament and we are so grateful for all the help. We couldn't do it without you.

We still need pictures of kids who are battling cancer to feature at the tournament. Several folks have said they're going to send a picture. If you're planning on sending one, be sure to get it to us soon as we have to make signs using the pictures and we need all the info. for it. If you don't have time to drop it in the mail, e-mail it to me adn I'll print it out!

Catie is doing well. Her counts are yucky (ANC=81), but they should start recovering before too long. I was worried about her platelets b/c she has lots of bruises. They have already started coming up though and were all the way up to 150 (the bottom end of normal). Her hemoglobin is a little on the low side, but is still hanging out around 8 and a 1/2. This is the longest it's hung out in the 8 range in a while (usually it stays above 9), and I do think she is feeling tired some b/c of it. Tonight, nothing would make her happy-- lots of tears. She had a good night's rest and a good nap, so I think the low counts are just kind of wearing on her.

We'll let you know when the news story will air. If you or anyone you know wants to sponsor a hole or play, please let me know!!

Love to all,
Jenny

Tuesday, February 1, 2005 8:48 PM CST

Hi all!!

It's official! We have a walker!!!!!!!!!!!!!!!! I wish you all could see her. You wait and wait and then one day... she just starts walking. For a couple of months now, she's been taking independent steps. First, one or two, then four or five, then ten or even twelve. She used to make us squat down so that she could walk into our arms. A couple of weeks ago, she quit insisting that we squat. She could only walk in a straight line, she couldn't turn or change directions while she was moving. Then Sunday, she just did it!!! She took off from the recliner, made the turn to walk between the refrigerator and the island in the kitchen and kept on walking to the dining room door. She never touched anything, just WALKED!!! At the ripe old age of 2 years and 4 months our girl has learned to walk.

She knows she's hot stuff! Tonight she did not stop. She walked and walked and walked. She held the phone to her ear and walked laps around the den (watched me to much I guess), she walked and drank from her sippy cup at the same time, she carried her baby and walked! Tre' and I just watched and smiled. She even tried to walk quickly to get away from me a few times, grinning the whole time. She even tries to march if you ask her too. I am so happy for HER! She's old enough to know that other kids could walk and she couldn't. She won't be fast enough to keep up easily for a while, but she's on her way.

Catie's counts are starting to fall and the rash is trying to flair back up. It's not bad at all, but it does look like it's coming back. Dr. Mazewski wasn't surprised to hear this as this rash can take weeks or months to clear up in someone with a healthy immune system. So we've started the cream and one of the meds again. Hopefully it won't be itchy. We go to the clinic tomorrow for chemo and counts. It should be a quick visit b/c the chemo is just vincristine. The kidney test results are in and her numbers looked GREAT!!!! We are thankful for every blessing.

Things are beginning to roll with the golf tournament some. I've gotten a few pictures in and we're starting to get sponsor money in. We're also raffling off a tabletop steamer donated by Southern Steamers. It's great for low country boil, boiling peanuts, etc. You can get one ticket for $2 or three tickets for $5. If you would like to be entered in the raffle, just post in the guestbook or e-mail me and we'll get you taken care of. Also, we really need pictures and sponsor info to be turned in by the middle of February so that we can get all of the signs made. Let me know if you need any info or sponsor/registration forms from me. I can e-mail the forms (including the ones for those who want to play).

Please hold Chandler close in prayer. He's having his MIBG
scan in the morning. Please pray that nothing lights up on it and that there is no cancer in his body.

Much love to all,
Thank you for your continued prayers,
Jenny

Saturday, January 29, 2005 10:21 AM CST

New Pictures added Friday 1/28

During our first week at Scottish Rite, Tre' and I had gone down to the Cafeteria to grab a bite to eat. We were still in those early days, the stunned, how can this be happening, deer in the headlight days. As we ate quietly I saw a family of 4 walk in. The youngest was a little boy, not much older than Catie, with a slick bald head. He was "hooked up" to his pole and had a nifty seat attached to the bottom so he could ride the pole as Mom or Dad pushed. I found myself mesmerized as I watched them sit down a couple of tables away. They ate, they talked, they laughed. They looked so "normal." It gave me hope that we could indeed make it through this journey we were heading on.

We ended up chatting with them and I learned they were the Booths from Moultrie: Jim Mack, Kim, Betsy, and Chandler. Chandler had been diagnosed with neuroblastoma in July and he was only 4 months older than Catie. Kim was a teacher, so we immediately hit it off. It was the beginning of a friendship that I am so thankful for. I only wish we had both had different reasons for our meeting. We've spent a few days at the beach together, we talk occasionally, I call Kim when I'm worried or the fear really sets in. I've learned there's nothing like another Mom who's walking in your shoes.

We were able to see Kim, Chandler, and Grandpa this week in Atlanta. We ate lunch together following Chandler's hearing test (which brought the great news that he doesn't need hearing aids). We hugged bye and after Catie's kidney test, we headed home to Guyton. Chandler and crew stayed in Atlanta as he had his "routine" CT scan on Friday.

The news is not what we wanted. There are 4-5 new spots on Chandler's lungs. A CT is only a picture and cannot confirm the return of cancer, so they are looking at another kind of scan and a possible biopsy (not a fun ordeal at all when your going to the lungs) to determine what these spots are. They've already talked treatment options, etc. There are some options, but they are to provide "more time." PLEASE, PLEASE, PLEASE pray for Chandler and his dear family. Please pray that what is showing up is NOT cancer. Please pray for his family as they endure the wait and contemplate what lies ahead. Please hold them close and visit their site (link above) and let them know you're praying.

I really hate this disease and what it does to kids and families.

Remember the golf tournament. The hope for kids like Chandler and Catie (and Jack, William, Kendrie, Will, McKenzie, Mary Grace, Jacob, Ethan, Lauren, Kylie, and all the others) is research. Research takes money and LOTS of it. We need it desperately. There are too many kids, and there will be more. We need new drugs. Please consider making a donation to the tournament by sponsoring a hole, playing, donating door prizes, or just giving. Also remember to send pictures of kids who have fought/are fighting so that we can show folks what we're raising money for. Just e-mail me or see contact info. above to ask questions is you have any.

Much love to you all, many prayers for Chandler,
Jenny

Saturday, January 29, 2005 10:21 AM CST

During our first week at Scottish Rite, Tre' and I had gone down to the Cafeteria to grab a bite to eat. We were still in those early days, the stunned, how can this be happening, deer in the headlight days. As we ate quietly I saw a family of 4 walk in. The youngest was a little boy, not much older than Catie, with a slick bald head. He was "hooked up" to his pole and had a nifty seat attached to the bottom so he could ride the pole as Mom or Dad pushed. I found myself mesmerized as I watched them sit down a couple of tables away. They ate, they talked, they laughed. They looked so "normal." It gave me hope that we could indeed make it through this journey we were heading on.

We ended up chatting with them and I learned they were the Booths from Moultrie: Jim Mack, Kim, Betsy, and Chandler. Chandler had been diagnosed with neuroblastoma in July and he was only 4 months older than Catie. Kim was a teacher, so we immediately hit it off. It was the beginning of a friendship that I am so thankful for. I only wish we had both had different reasons for our meeting. We've spent a few days at the beach together, we talk occasionally, I call Kim when I'm worried or the fear really sets in. I've learned there's nothing like another Mom who's walking in your shoes.

We were able to see Kim, Chandler, and Grandpa this week in Atlanta. We ate lunch together following Chandler's hearing test (which brought the great news that he doesn't need hearing aids). We hugged bye and after Catie's kidney test, we headed home to Guyton. Chandler and crew stayed in Atlanta as he had his "routine" CT scan on Friday.

The news is not what we wanted. There are 4-5 new spots on Chandler's lungs. A CT is only a picture and cannot confirm the return of cancer, so they are looking at another kind of scan and a possible biopsy (not a fun ordeal at all when your going to the lungs) to determine what these spots are. They've already talked treatment options, etc. There are some options, but they are to provide "more time." PLEASE, PLEASE, PLEASE pray for Chandler and his dear family. Please pray that what is showing up is NOT cancer. Please pray for his family as they endure the wait and contemplate what lies ahead. Please hold them close and visit their site (link above) and let them know you're praying.

I really hate this disease and what it does to kids and families.

Remember the golf tournament. The hope for kids like Chandler and Catie (and Jack, William, Kendrie, Will, McKenzie, Mary Grace, Jacob, Ethan, Lauren, Kylie, and all the others) is research. Research takes money and LOTS of it. We need it desperately. There are too many kids, and there will be more. We need new drugs. Please consider making a donation to the tournament by sponsoring a hole, playing, donating door prizes, or just giving. Also remember to send pictures of kids who have fought/are fighting so that we can show folks what we're raising money for. Just e-mail me or see contact info. above to ask questions is you have any.

Much love to you all, many prayers for Chandler,
Jenny

Thursday, January 27, 2005 8:51 PM CST

Home sweet home... tired but good... hearing test was perfect!!! We should find out about the kidney test by the first of next week.

More tomorrow!
Love,
Tre', Jenny, and especially Catie

Wednesday, January 26, 2005 5:27 PM CST

Hi All!!
We hope this finds you doing well! We are good, and the chemo is flowing. The day went well, but it was a long one. We spent most of the day in the clinic. Thank goodness for paints and glue activities in the toddler area!! Nothing much to tell right now which is always a good thing! Just wanted you to know we're here safe and sound and that things are going as expected.

We've knocked out 2 appointments w/ doctors, one more to go tomorrow when Catie is discharged. She will also get her kidneys and hearing tested while she is inpatient as she is due for Cisplatin (YUCK!!) next round.

Keep on praying!
Much love and thanks,
Jenny

Also, we need pictures of Catie's fellow fighters for use at our golf tournament. Our address is above, feel free to mail it there with your child's info. Call or e-mail me with any questions. YOU can make this a great success, but we NEED your pictures. Thanks to those who have already resonded telling me you'll be sending pictures. Thanks ESPECIALLY to those who have contacted me about sponsorships and playing in the tournament. If you need for me to mail you a sponsorship or registration form or if you need to know who to make checks ou to, just contact me at my address or phone number (above) or at my e-mail (below). Thanks for all your help!

Monday, January 24, 2005 9:30 PM CST

Hi All!

We hope this finds you doing well! Things here have been great! Catie's rash is finally beginning to go away. It has been itching her some as the skin seems to be very dry. We took her to a dermatologist on Friday and he confirmed that it was a rash caused by her body's reaction to some sort of virus. It is normally not dangerous, but it can, in rare cases, turn into a rather serious syndrome. Thank goodness all we had to deal with was the rash!!

Tomorrow we will head to Atlanta. Tuesday afternoon should be fun as we're meeting with our buddies Mary Grace and Kendrie (see links above). We report to the clinic at 9:00 Wednesday morning for a visit with Dr. Mazewski, bloodwork, and the start of IV fluids. At 2:00 that afternoon we have an appointment 2 floors down so we'll unhook Catie, go to that appt., and then (so long as a room is available) head on over to the hospital for a chemo admission. Catie should be discharge early Thursday afternoon. She has an appt. w/ Dr. Pollard, her eye doctor, latee in the afternoon. Then we hope to see our buddy Chandler (link above). He will be up for an important hearing test and scans. We will head home on Friday.

Please continue to pray for Catie -- long, happy, healthy life is at the top of my list... Also near the top: destruction of all cancer cells and that they never come back, protection from infection, for her to keep her sweet spirit. We have been so blessed throughout this journey. We are thankful that Catie continues to avoid major infections. Please pray that this trend continues.

Our friends need your prayers too. Check in on them if you are able to. William and Chandler have important scans this week, Kendrie has an LP tomorrow, and Mary Grace gets scan results tomorrow.

Thank you for checking in and for praying. I'll update from Atlanta, but it may not be until Wed. PM.

God bless each and every one of you.

Love,
Jenny

Also, we need pictures of Catie's fellow fighters for use at our golf tournament. Our address is above, feel free to mail it there with your child's info. Call or e-mail me with any questions. YOU can make this a great success, but we NEED your pictures. Thanks to those who have already resonded telling me you'll be sending pictures. Thanks ESPECIALLY to those who have contacted me about sponsorships and playing in the tournament. If you need for me to mail you a sponsorship or registration form or if you need to know who to make checks ou to, just contact me at my address or phone number (above) or at my e-mail (below). Thanks for all your help!

Thursday, January 20, 2005 12:35 AM CST

Hi All!

Hope this finds you doing well! We are doing well and enjoying the cooler weather.

The only real medical news that we have right now is this mysterious rash that Catie has. We first thought it was ringworm and we were treating that. It now seems that the rash is too extensive, so the docs are leaning towards Catie's body reacting to some sort of virus in her system. It looks pretty icky, but it doesn't bother her often so that's good. The good news is that it doesn't seem to be anything dangerous (please pray that we're right in this assumption) so the docs will keep trying to find the best way to treat it. If it's not looking better in the morning we'll be going to a local dermatologist to have it checked out.

Catie's counts are on the rise, so that's always good!! She's feeling well and acting great and walking better and talking more every day. She's still not walking independently, but she is getting closer and closer. She seems to do better if she doesn't concentrate to hard and is getting more and more confident. If she is in the mood to, she can make it a good 15 - 20 feet. Trust me though, she has to be in the mood to do it. Last night I had a dream and she was walking everywhere. Believe it our not, it's the first dream I've ever had that she was walking in.

Next week we head to Atlanta for round 17. Following the round, we will, God-willing, be in single digits with only 9 to go!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
WOW! It was very hard to see single digits ever getting here when we started out at 26. There are still many hurdles to over come and 40 weeks of chemo is no easy task, but... we are beginning to see the light at the end. We will be in Atlanta from Tuesday through Friday. In addition to seeing normal docs we will see Catie eye doctor (her tear duct may have to be redone) and a genetic specialist. We'll also get to visit with some folks we've met along the way. We hope to see Kendrie and Chandler while we're in town.

Lots of folks need special prayers right now. In particular: Ben B. (nearing what appears to be the end of his journey), Kylie (recovering from a difficult surgery), Caroline and Ethan (both recovering from transplant), Coulter (just beginning the transplant process), Martin, Mary Grace (scans today), and the families of all of our angels. Please drop in and offer encouragement to these families as you are able. You really do make a difference when you do this.

Also, we need pictures of Catie's fellow fighters for use at our golf tournament. Our address is above, feel free to mail it there with your child's info. Call or e-mail me with any questions. YOU can make this a great success, but we NEED your pictures. Thanks to those who have already resonded telling me you'll be sending pictures. Thanks ESPECIALLY to those who have contacted me about sponsorships and playing in the tournament. If you need for me to mail you a sponsorship or registration form or if you need to know who to make checks ou to, just contact me at my address or phone number (above) or at my e-mail (below). Thanks for all your help!

Keep praying,
Jenny