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Tuesday, December 25, 2007 7:05 PM CST
Just wanted to wish you all a very Merry Christmas! Don't forget to celebrate the true meaning of Christmas: the birth of our Savior!
Love,
Raquel
Wednesday, December 19, 2007 1:17 PM CST
We received the phone call from NY that we expected at the end of last week: that all of the rest of Kylie's tests (urine and bone marrow biopsies) were clear! Praise God! In fact, her urine markers were both back down into the normal range which is what I had asked everyone to pray for as well. I was so excited that I took Kylie aside after I hung up the phone and told her the great news. She smiled and ran to me and hugged me and said "Mommy, isn't God so good to me? He answers ALL my prayers!" It warmed my heart to know that at 4 1/2 years old she gets it.
Obviously, we've been given our most wonderful Christmas gift this year. Anything else will pale in comparison. In fact, Drew and I decided to once again not exchange gifts with eachother. I think we've been given enough with Kylie's healing to last us both a lifetime.
We had an extremely busy last week. Kylie and I went to see the Nutcracker at the Fox with the Children's Wish Foundation. Not only did they provide us with tickets and dinner, they took us in a stretch limosine Navagator! Kylie was thrilled! Then Kylie had her own performances of the Nutcracker on Saturday and on Sunday. She was the most beautiful angel ever. Perfect character for her to play. If I can get permission from the photographer to post a picture of her that they took, I will. Lastly, today was Kylie's Christmas party at school and I was one of the moms in charge. I have to admit I breathed a very large sigh of relief after that was over. School parties are getting quite intense these days. Enough said.
I'm not sure if I wrote this in the last few weeks but Kylie took up soccer again. One of the wonderful moms from Kylie's class last year is a coach and she called me and asked if Kylie would like to join her team. She played in her first game three weeks ago and kicked butt! I was very suprised at how aggressive she was. She's such a little "girly girl" walking around in high heels and princess dresses so to see her out there holding her own in her very first game (with zero practices!) was very impressive! She missed the next two games with being in NY and for her final Nutcracker rehearsal but she'll be right back in there tomorrow night.
For those of you who went to the www.cookiesforkidscancer.org site to order cookies at the end of last week you were probably surprised to see the post that they were completely sold out!!! We were all thrilled to hear the great news! Sales were slow at first and we were concerned that people weren't buying like we'd hoped. But, as usual, everyone came through and the entire batch was sold out a few days before the planned day to stop selling them. Thank you to all of you who ordered them! In fact, Memorial Sloan Kettering Cancer Center was so impressed by the sales and donations, as well as the other fundraising that they've decided to go ahead and begin making the new humanized antibodies even before we finish raising the $3 million!!! Also, can you believe that a Princess from another country (who asked us to keep her anonymous) donated $685,000 to the Band of Parents?!! She doesn't even live in America, but was so touched by the efforts of the Band that she wanted to help. Mankind never ceases to amaze me! Thank you all! Anyone wishing to make a donation can still go to the site to do so.
Please continue to pray for Kylie's good health, the health of all children with cancer and a cure for ALL cancers.
Have a blessed week!
love,
Raquel
Friday, December 7, 2007 3:35 PM CST
We spoke with the doctors this morning before and after Kylie's bone marrow biopsy. They told us that all of Kylie's scans from Tuesday through Thursday were negative of Neuroblastoma! We won't get the results back from the bone marrow biopsies or the urine for a few weeks. Dr. Kushner told us that after this trip, Kylie will no longer need bone marrow biopsies done! We were thrilled with that news as usually it's the worst part of the work up. Kylie was a total champ in getting her scans done without anesthesia. She did the CT on Tuesday for about 15-20 minutes and then the MIBG on Wednesday for at least an hour! She did the MRI on Thursday for about 20-25 minutes and was able to make it through that one as well. The MRI was the worst with being in the tunnel and the loud noises that go along with it. She did start to cry toward the very end and wanted it to be over with, but they were able to get a clear scan even through the tears. Our favorite nurse practioner said that Kylie's a "rock star" and the news flew fast around the floor that she was able to do all the scans without anesthesia. Even the doctors were high-fiving her without us even telling them - they had already heard! Needless to say, a trip to the Times Square Toys R Us was well-deserved and even Christian walked out with some Hot Wheels for being such a good brother.
The only thing the doctors had to comment on regarding Kylie's scans was that they found a benign cyst on her pelvic bone. After talking with them more this morning they assured us that this would never turn into cancer and that it's just something that happends occasionally and that the only way they'd even attempt to remove it was if it ever bothered her in any way. Otherwise, we just pretend it doesn't exist. I can do that!
Kylie's visit with the long term care doctor was uneventful. They basically just went over all the horrible things that can happen after chemotheraphy and radiation that we already knew about. It's hard to hear what they have to say, but I know she's in good Heavenly hands.
Christian's been his usual rowdy self. We've heard the usual "wow, you have your hands full with him!" at least three times a day since we've been here. He's learned how to open the door in the hotel room and the one in the doctors office and will take off out of the room. The first time he did it took us by surprise when we heard the door slam in the hotel and then silence. I ran to the door from the bedroom, opened the door and then saw his little red head flying down to the end of the hall. He's so quick! Then, the worst was when we were in the lobby talking to the staff here at the hotel that we've befriended and Christian walked up to see the Christmas tree (in our site). He managed to pass the Christmas tree and disappeared. After a frantic search we were "handed" our son by an older gentleman who found Christian riding up the elevator by himself.... (sigh)
Thank you all so much for your prayers. We ask that you join us in thanking God for the clear scans and in advance for the upcoming results we will get for the bone marrows and markers in the urine. Please continue to pray for Kylie's good health, the health of all other children with cancer and the cure for ALL cancers.
love,
Raquel
Sunday, December 2, 2007 12:48 AM CST
We leave for NY Monday morning. Kylie begins her scans on Tuesday morning with a CT scan and gets her MIBG nuclear injection on that same afternoon. Wednesday, Thursday and Friday are filled with a PET scan, MIBG scan, MRI, blood and urine tests, and then finally the worst on Friday, the dreaded bone marrow biopsies. Kylie's going to try to do most of the scans without anesthesia this time, but of course, the BM biopsies will be done while she's under. We bought her two movies today so she can watch them while lying in the scanning machines. I hope it goes well. She's being brave now, but I know once she goes in and sees all those scary machines, things may change. I promised her I'd hold her hand the entire time. We know that all of you are always praying for Kylie. We ask that you continue to lift her up in prayer as she receives these scans and tests and that everything comes out perfectly normal. Her urine markers always come back at just above the high end for normal, although the doctors always tell s not to worry about that at all because anything could affect those numbers (like what you eat for instance). So, I also ask for prayers that these markers dip back down into the normal range (the low end of normal!!) and that she never has elevated markers again.
The whole reason I continue to keep up Kylie's journal is not only to keep all those who care about her informed of what's going on in her life and health, but because I know that the over a million hits that Kylie's received on her website is probably over a million prayers that have been sent up to heaven on her behalf. We thank you very much for every single prayer you've said for her and for those prayers that you continue to say for her.
We will report daily on news as we get it. We usually get preliminaries as we go along, probably the day after each test. The final reports as well as the bone marrow biopsies and urine test results won't be back for a few weeks. Of course, we have faith that everything's going to be perfect.
I'm a chicken when it comes to flying so if you could say a prayer for safe flights for us, that would make me feel all the more better! : ) I'm sure Drew and the kids would appreciate my palms being a little less sweaty for the two hours we're on the airplane!
Have a blessed week! I know you're praying for Kylie. Please also pray for the other kids suffering from cancer and a cure for ALL cancers.
love,
Raquel
p.s. They've officially started baking the Band of Parents fundraising cookies in NY! They baked over 4,000 cookies yesterday! Also, they lowered the cost of shipping for a single box, plus only added $2.00 in shipping charges for each additional box. Please make those last minute gifts a box of cookies!! www.cookiesforkidscancer.ORG.
Wednesday, November 28, 2007 11:56 AM CST
COOL PARENT ALERT!!!!!!
Drew was able to score some Hannah Montana tickets for Kylie for tonight's concert here in Atlanta!! She's SO excited and told me that she wants to wear her "fancy clothes" tonight which, in her words, consists of "high heels and a fancy dress." Oh no, she's a little ME!!
Raquel
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Monday, November 26, 2007 1:19 PM CST
Our family had a wonderful Thanksgiving this year! My sister, Rhonda, and her family flew down from Virginia to be with us. My younger sister, Renata, also came. Even my brother-in-law's twin brother and family came! It was like a family reunion for everyone! The whole house was filled with warm fuzzies! We cooked and cooked and ate and ate. The only complaint was that the time together was too short. Rhonda and her family had to fly back on Friday morning. I'm still trying to convince my brother-in-law to move her back to Atlanta.
Obviously, as we do every Thanksgiving since Kylie's first year being cancer free in 2005, we have something above all other things to be very, very thankful for. I can't explain the feelings that go along with that and how it changes the way you look at things like "Thanksgiving". Although it was just like any other day of us giving thanks to God for the greatest gift we could have ever been given, it was a day to do it along with family and friends which makes it even more special.
On another note, I understand that we've only reached 11% of our selling goal for the cookies for the Band of Parents fundraiser. I believe the deadline to order is on December 16th. So, if you're still looking for a gift for that person who is so hard to buy for or "has everything", please consider sending a box of cookies. You can click on the cookies picture above or go to www.cookiesforkidscancer.org.
I can't believe it's been 6 months already, but we leave for NY a week from today, Monday, December 3rd. Kylie's scheduled for tests every day Tuesday-Friday of that week. They're going to try a few of the scans without anesthesia this time. I hope it goes alright for her. One is a short scan (about 15 minutes) so they wanted to try that one anyway, but the second one is about 90 minutes and because they are short on anesthesiologists, they'd like her to try that one as well. I promised her I'd stay and hold her hand the entire time....and...a big prize!!! : ) Please pray that she can get through these tests easily. And, most of all, please pray that every single one of these tests come back completely normal and that she remains (as we already know!) CANCER FREE forever!
Have a blessed week. Please pray for Kylie's continued good health, the health of all children with cancer and a cure for ALL cancers.
love,
Raquel
Monday, November 26, 2007 1:19 PM CST
Our family had a wonderful Thanksgiving this year! My sister, Rhonda, and her family flew down from Virginia to be with us. My younger sister, Renata, also came. Even my brother-in-law's twin brother and family came! It was like a family reunion for everyone! The whole house was filled with warm fuzzies! We cooked and cooked and ate and ate. The only complaint was that the time together was too short. Rhonda and her family had to fly back on Friday morning. I'm still trying to convince my brother-in-law to move her back to Atlanta.
Obviously, as we do every Thanksgiving since Kylie's first year being cancer free in 2005, we have something above all other things to be very, very thankful for. I can't explain the feelings that go along with that and how it changes the way you look at things like "Thanksgiving". Although it was just like any other day of us giving thanks to God for the greatest gift we could have ever been given, it was a day to do it along with family and friends which makes it even more special.
On another note, I understand that we've only reached 11% of our selling goal for the cookies for the Band of Parents fundraiser. I believe the deadline to order is on December 16th. So, if you're still looking for a gift for that person who is so hard to buy for or "has everything", please consider sending a box of cookies. You can click on the cookies picture above or go to www.cookiesforkidscancer.org.
I can't believe it's been 6 months already, but we leave for NY a week from today, Monday, December 3rd. Kylie's scheduled for tests every day Tuesday-Friday of that week. They're going to try a few of the scans without anesthesia this time. I hope it goes alright for her. One is a short scan (about 15 minutes) so they wanted to try that one anyway, but the second one is about 90 minutes and because they are short on anesthesiologists, they'd like her to try that one as well. I promised her I'd stay and hold her hand the entire time....and...a big prize!!! : ) Please pray that she can get through these tests easily. And, most of all, please pray that every single one of these tests come back completely normal and that she remains (as we already know!) CANCER FREE forever!
Have a blessed week. Please pray for Kylie's continued good health, the health of all children with cancer and a cure for ALL cancers.
love,
Raquel
Saturday, November 17, 2007 9:33 AM CST
The website taking orders for the cookies fundraiser is now up and running! If you had trouble accessing it yesterday, try it again today. There should be no problems now.
My sister's husband sent the link to everyone in his company, as well as all of his friends. He also came up with the great idea to buy a box for each one of his clients! A tax deductible Christmas gift! You can't beat that! Also, I heard from someone yesterday who has been following Kylie's site for a long time and she is sending boxes to her husband's entire Army unit in Iraq!! I told the Band of Parents group and they are all so excited to know that word about our cause is being extended all the way to Iraq and to our brave soldiers nonetheless! The possibilities are endless! I'll update you all on sales as I receive them. Please know how important this fundraising drive is. There are several parents in our group whose children need these antibodies NOW because their children have already relapsed and the antibodies can't even be developed until the almost $3 million is raised. Go to www.cookiesforkidscancer.org (make sure you don't enter in ".com", it's ".ORG") or to make it even easier, click on the cookies picture above this journal entry!
Have a blessed weekend! Please continue to pray for Kylie's good health, the health of all children with cancer and a cure for ALL cancers!
love,
Raquel
Friday, November 16, 2007 10:18 PM EST
I've been waiting all day to post to say the cookie site is open. AND NOW IT IS! Unfortunately, for some strange reason there has been a few glitches for some people trying to get to the site (including me!) and it still says it's not ready yet when I try to access it. It may work for you because it is working for many people in our group. To try it now, go to www.cookiesforkidscancer.org. (Make sure you use ".org" and not ".com" Otherwise, I'll let you know as soon as I find out when it's working correctly for everyone to access! Thanks for checking in.
Raquel
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Friday, November 9, 2007 12:06 AM CST
I have been so busy lately that I've forgotten to update the site. It's been such an exciting past couple of weeks. I mentioned in my last post that Drew and I are now a part of the Band of Parents (www.bandofparents.org), which is trying to raise about 3 million dollars so that the researchers at Memorial Sloan Kettering Cancer Center can fund the development of the new humanized antibodies. The whole project is off and running and it's amazing to see these parents working together. The doctors at MSKCC in NY have said that they have never seen a group of parents with children with any other type of cancer band together and be so proactive in helping to find a cure. I've placed a few links above and below if you'd like to see what we're doing. The iGive site is simply a link to many large stores (Gap, Nordstrom, Best Buy, etc.) that you can make purchases through and iGive will donate to Band of Parents for each purchase made! See, you can help by really doing nothing but shopping! Perfect for all of those holiday purchases!
Also, there's a link below which you can also access through the main Band of Parents website which has many gifts which proceeds go to our cause. Check it out. There's really some neat stuff in there.
Lastly, for any of you who have no interest in the above two ways to give, I have an irresistable way for you to help: COOKIES! The recipes were developed by a famous cookbook author, cooked by chefs from The French Culinary Institute, and from what I understand, have been personally tasted by the operators of the Epicurious site who liked them so much that they have offered to put the cookies up for sale on their own website!!! Nearly 100f the proceeds of the sale of these cookies will go to Band of Parents! The site isn't going to be opened up for orders until November 16th but we wanted to tell you about it now so you can be thinking of who you'd like to send these to. They are $30 and will be shipped with a gift card explaining the significance of your purchase. If you're like me and have people to shop for at Christmas that seem to already have everything, this is a perfect gift. It's so meaningful. In fact, if you're on my list, you'll probably be getting some! And, if you don't like cookies, WE DO so send some to us! LOL! Here's the site:
www.cookiesforkidscancer.org
Thanks for listening. As you can tell, we're very passionate about finding a cure for his disease.
Please continue to pray for Kylie's health, the health of all children with cancer and a cure for all cancers. I pray that we're closer every day.
love,
Raquel
Wednesday, October 31, 2007 11:44 AM CDT
Happy Halloween!
Christmas is my favorite holiday of the year, but Halloween ranks right up there with Thanksgiving as my second favorite. I remember how excited I used to get as a child to go trick-or-treating and now to see Kylie so excited it just brings all the fun back for me. Plus, I just love handing out candy and seeing all the costumes. Kylie is going as Sleeping Beauty and Christian is going as Elmo, which has been recycled from 2004 when Kylie wore it. Halloween 2004 was about 3 weeks after Kylie's diagnosis and it was about 100 degrees and Kylie was in a diaper with that huge furry costume and we kept having to unzip it between houses and her little chest tubes were hanging out of the front zipper. I think it will be a little more simple for Christian to wear it this year!
I have some exciting parental news to share with you: Kylie has officially stopped sucking her thumb! This news is actually about a month old but I kept forgetting to post it. You have no idea how much of a shock this has been for us. We thought she was going to be in highschool before she stopped. She finally decided SHE wanted to do it and did it. She still wears a mitten to bed at night to make sure she doesn't do it in her sleep. The only bad news is that Drew and I promised her for the past two years that if she stopped sucking her thumb we'd take her to Disney World. That's one of those promises that you don't think you're going to have to fulfill anytime soon. I guess we should start saving now...
We attended The Scotty Foundation Gala on Saturday night. If you remember, The Scotty Foundation benefits childhood cancer. Drew played a large role in gathering items to be donated. Drew's donations alone raised over $13,000! They held the golf tournament on Monday. I can't wait to find out how much was raised over all.
Lastly, Drew and I are now part of a group called Band of Parents (www.bandofparents.org). This group consists of Neuroblastoma parents who are trying to find a way to fund the development of a new humanized form of the antibodies that Kylie received at Memorial Sloan Kettering in New York. The ones Kylie received were derived from mice and many kids bodies reject it and end up building immunity to it, which is the HAMA Kylie received. They feel that the humanized form will keep that from happening and that it could save many more children. Can you believe that the parents are having to come up with the funds to develop this treatment because there are no grants or funds or drug companies willing to help? We are trying to come up with fundraising ideas so that we can help in this effort and will tell you about them when we come up with some. For now, you can go to the bandofparents.org website to donate directly, donate through us or go to www.cafepress.com/bandofparents which has several items for sale to benefit this cause. By the way, when you visit the bandofparents.com website you'll notice that the homepage is in pink. This was changed today in memory of Grace Oughton (www.savegrace.com), a precious 3 year old little girl who passed away on Monday from Neuroblastoma. Yet another child lost to this horrible disease.
Please continue to pray for Kylie's health, the health of all children with cancer and a cure for ALL cancers.
love,
Raquel
Monday, October 22, 2007 10:14 AM CDT
Something interesting dawned on me this past weekend. The three year mark of Kylie's initial diagnosis just passed on October 7th. In the past, it's been something we dwelled on during the weeks before. The flashbacks of the horrific day and those that followed were still raw in our emotions. However, this year, we forgot. It amazed me that the day came and went without a second thought by any of us. While thinking about it this morning I realized that we're in such a different place now. We no longer constantly think about where we've been (although we will never choose to forget that because it's made this entire family into better people because of it), but we've chosen to focus on where we are NOW. And NOW is a wonderfully happy place with a family that's been blessed more than we deserve. There is no doubt that God shows His mighty presence in our lives every day. We choose to look for it and we see it. For that I am so very, very thankful.
Please continue to pray for Kylie's good health, the health of all other children with cancer and a cure for ALL cancers.
love,
Raquel
Thursday, October 11, 2007 11:51 AM CDT
Things have been going great in the last days since I've updated. Well, except that I got the worst case of the stomach flu I've ever had and was bedridden for a day and sick for two days. Mom's aren't allowed to get sick. Thankfully, Drew was able to work from home the first morning and get Kylie off to school and help out til Christian went down for his nap. I was pretty much on the couch for the next 36 hours. I'm so grateful to my neighbors for helping me out with Kylie so I could rest. I've been blessed with the best of friends.
Exciting news alert: Kylie made the Nutcracker ballet this year!! Drew said it best - it's going to be awful making all those extra practices and paying the money it's going to take for costumes, etc. but those minutes of her on stage will be worth every minute and every penny! She'll be performing twice and I'm sure I'll be in the front row each time!
My children aren't sleeping well. Kylie's resisting going to sleep at night which puts her down almost 45 minutes past her bedtime and she's still waking up before sunrise. Christian hasn't been napping well either and he's been waking up even earlier than Kylie most days. I keep repeating mentally "it's just a phase...it's just a phase....", but Drew and I are exhausted. I forgot to mention that Kylie's been having her night terrors pretty regularly again lately. That doesn't help. I can't complain though. I have two wonderfully healthy children. I'm thankful that they're both here to wake me up!!
Have a blessed day. Please continue to pray for Kylie's continued good health, the health of all children with cancer and a cure for ALL cancers.
love,
Raquel
Dates and sites to remember:
The Scotty Foundation golf tournament for pediatric cancer is being held on Oct. 29. The deadline for registration was Sept. 28th, but they may allow more registrants. This is a huge event (600 golfers!). We'd love for some of you to come and play for Kylie. There's also a big dinner and auction being held on the 27th. We'd love to see some of yo uthere. http://www.thescotty.org/event.asp
Remember, at this point, the only way pediatric cancer research is going to be funded is through US!!
You Tube video: http://www.youtube.com/watch?v=AGS4yE5v9rM
Monday, October 1, 2007 11:50 AM CDT
Yay! It's October and the weather is finally starting to act like Fall! Well, in the morning anyway, until it gets into the 80's in the afternoon. I'll take it.
We've been spending lots of time outdoors with the cooler weather. Kylie's been running around playing "horse" (no, not the basketball game) with her friends. She gallops around and chases them up and down the street. Christian gets me more exercise everytime I take him out. He will take off and I have to make a mad dash to keep him from the road or someone's garage. Nothing is off-limits for him.
Kylie had a checkup with her local oncologist on Friday. Everything was perfect. He told us that if they were her primary doctors that they would be scanning her every 4 months until she's 3 year post transplant (this coming up April) instead of the 6 we're doing now. Drew and I discussed it and we both feel so secure in her healing that we aren't jumping at the opportunity to move it up by two months. Her next work-up is scheduled for the first week of December. She'll be getting the works - CT scan, MIBG, MRI, bone marrows, urine, blood, etc. Plus, she'll have her first appointment with a long-term care doctor. I can't even type that without smiling. "LONG-TERM CARE". What a beautiful thing. With all the scans and appointments that means we'll be spending almost a full week in NY this time. Considering it will be the Christmas season, spending a week in NY will be awesome!
Have a blessed day! Please pray for Kylie's continued good health, the health of all other children with cancer and a cure for ALL cancers.
love,
Raquel
Dates and sites to remember:
The Scotty Foundation golf tournament for pediatric cancer is being held on Oct. 29. The deadline for registration was Sept. 28th, but they may allow more registrants. This is a huge event (600 golfers!). We'd love for some of you to come and play for Kylie. http://www.thescotty.org/event.asp
Remember, at this point, the only way pediatric cancer research is going to be funded is through US!!
You Tube video: http://www.youtube.com/watch?v=AGS4yE5v9rM
Wednesday, September 19, 2007 11:51 AM CDT
Funny that bad news can sometimes be good news. I received a dreaded letter from the Georgia Department of Medicaid: Kylie's officially been terminated from the Katie Beckett Deeming Waiver program she's been receiving since 2005. We've dreaded this because the program has been covering all of Kylie's deductables (only from Georgia doctors, not NY) and co-pays AND, most importantly, all of her expensive dental care. If you remember, her first dental surgery was over $7,000! We have been so thankful for this program and were sorry to see the day it would be taken away. However, the reason it was taken away is because Kylie is no longer eligible for the program because she is doing so well! I found a tremendous amount of peace in that the day I received the paperwork. Thank you God!
Kylie's still enjoying school. I thought the excitement would wear off already, but it hasn't. Her teacher has told me several times that Kylie is nothing but smiles every time she looks at her. She said she always looks so happy. I'm glad it shows.
Christian's great. He's missing Kylie while she's away at school. He still points to her booster seat and says "where's Kylie?" as soon as we drop her off and any time we run errands without her. I always knew that a sibling bond is such an awesome thing because of my relationship with my sisters, but it's so wonderful to see it through the eyes of your children.
Have a blessed day. Please continue to pray for Kylie's good health, the health of all children with cancer and the cure for ALL cancers!!
love,
Raquel
Dates and sites to remember:
(1) The Scotty Foundation golf tournament for pediatric cancer is being held on Oct. 29. The deadline for registration is coming up on Sept. 28th. This is a huge event (600 golfers!). We'd love for some of you to come and play for Kylie. http://www.thescotty.org/event.asp
(2) The Loneliest Road Campaign. Five fathers of children with Neuroblastoma are cycling 3700 miles across the U.S. to raise money for Neuroblastoma research. Please visit their site to donate money toward the campaign and find out their present location at: http://www.graceoughtoncancerfoundation.org/loneliestroad/
Remember, at this point, the only way pediatric cancer research is going to be funded is through US!!
You Tube video: http://www.youtube.com/watch?v=AGS4yE5v9rM
Monday, September 10, 2007 1:51 PM CDT
I wasn't planning on updating the page today until I was visiting the webpage of one of our little friends, Chandler Booth. His mother, Kim, had the following link for a video on You Tube. I ask you all to please watch it:
http://www.youtube.com/watch?v=AGS4yE5v9rM
and then pray.
love,
Raquel
Dates and sites to remember:
(1) The Scotty Foundation golf tournament for pediatric cancer is being held on Oct. 29. The deadline for registration is coming up on Sept. 28th. This is a huge event (600 golfers!). We'd love for some of you to come and play for Kylie. http://www.thescotty.org/event.asp
(2) The Loneliest Road Campaign. Five fathers of children with Neuroblastoma are cycling 3700 miles across the U.S. to raise money for Neuroblastoma research. Please visit their site to donate money toward the campaign at: http://www.graceoughtoncancerfoundation.org/loneliestroad/
Remember, at this point, the only way pediatric cancer research is going to be funded is through US!!
Wednesday, September 5, 2007 11:42 AM CDT
Kylie had her first day of school yesterday. She was a little quiet going in, but quickly found a few of her old friends from last year and felt right at home again in her new 4 year old class. She loves knowing she's in a "4 year old class" and tells everyone she can. I definitely had a hard time letting her go again. I hid it til I was alone so she wouldn't see. It was one of those times where the car and house are so quiet that you keep forgetting that she's not there and you panic for a second until you remember. For being only four years old she sure is a lot of fun for me to be around and I miss her being here.
Christian didn't have a hard time with Kylie going to school - he had a hard time that he couldn't stay! He cried and cried when we pried his little fingers off of the toys in the room and kept saying "schooooool, schooooool." He's so independent and if they had a class for his age there I think I'd have to let him go.
We received a call from Children's Wish Foundation yesterday offering Kylie tickets to see Walking with Dinosaurs on Friday morning. She's been wanting to go ever since she saw commercials on TV for it. She gets to take a friend or two and she is thrilled. She asked me this morning if dinosaurs lived a long time ago, "like when cowboys lived". I told her no, that they lived WAY before cowboys were here. She then said "you mean like when Daddy was born?" HA! Poor Daddy.
Have a blessed week. Please continue to pray for Kylie's good health, the health of all other children with cancer and a cure for ALL cancers!
love,
Raquel
Dates and sites to remember:
(1) The Scotty Foundation golf tournament for pediatric cancer is being held on Oct. 29. The deadline for registration is coming up on Sept. 28th. This is a huge event (600 golfers!). We'd love for some of you to come and play for Kylie. http://www.thescotty.org/event.asp
(2) The Loneliest Road Campaign. Five fathers of children with Neuroblastoma are cycling 3700 miles across the U.S. to raise money for Neuroblastoma research. Please visit their site to donate money toward the campaign at: http://www.graceoughtoncancerfoundation.org/loneliestroad/
Remember, at this point, the only way pediatric cancer research is going to be funded is through US!!
Tuesday, August 28, 2007 6:18 PM CDT
Yes, that's my little girl in the new picture. I can't believe it myself sometimes. Kylie washed her hair the other night and asked me to blow dry it (she normally lets it air dry) and then asked me if I'd flat iron it like I do mine. When I finished I couldn't believe my eyes. Her hair was probably 6 inches longer than I thought it was. The flat, straight hair made her gorgeous HUGE brown eyes pop out even more. Something about those eyes...they say a lot. They don't speak of her past pain though. They shout happiness and joy. I can see forever in those eyes. I know that by the grace of God she's a survivor.
Good news of the week - Kylie had her latest dental check up and she had no cavities! She's had a good amount of dental work in the past, including a crown. It's very common in patients who have received chemo to have a lot of dental problems. I'm hoping and praying that we're past all the damage and now just brushing for the future!!
Kylie starts school a week from today. We're sending her 4 days a week to a private pre-k instead of public. I'm just not ready to let my baby go to school full time. There's plenty of time for that during the next 16 years of school!
Have a wonderful, safe and blessed Labor Day weekend. Please continue to pray for Kylie's continued good health, the health of all children with cancer and a cure for ALL cancers!!
love,
Raquel
Dates and sites to remember:
(1) The Scotty Foundation golf tournament for pediatric cancer is being held on Oct. 29. The deadline for registration is coming up on Sept. 28th. This is a huge event (600 golfers!). We'd love for some of you to come and play for Kylie. http://www.thescotty.org/event.asp
(2) The Loneliest Road Campaign. Five fathers of children with Neuroblastoma are cycling 3700 miles across the U.S. to raise money for Neuroblastoma research. Please visit their site to donate money toward the campaign at: http://www.graceoughtoncancerfoundation.org/loneliestroad/
Remember, at this point, the only way pediatric cancer research is going to be funded is through US!!
Monday, August 20, 2007 12:31 AM CDT
I had the pleasure of spending this past weekend with my sister, Rhonda, and my niece, Kelly. They flew down from Virginia on Friday. We had a "High School Musical" party on Friday night with several friends and we were able to celebrate Kelly's 9th birthday. We had so much fun! Drew went to Gainesville, Fla. to play in a charity golf tournament so it was just us girls (and Christian) for the weekend.
Rhonda and I atttended a wine tasting on Saturday night at a place called "Vino 100" here in Alpharetta. It was held by The Scotty Foundation, which is a foundation that supports the fight against pediatric cancers. They're having one more this Saturday from 4:30-6:30. It's only $5.00 and, obviously, goes to a great cause. Drew has become involved with The Scotty Foundation and it's really grown over the past few years. If you get a moment, go to www.thescottyfoundation.org and read the sad story about how this foundation was started. They also hold a major golf tournament in the fall that some of you may be interested in.
Now for the good news! I received a call this morning from Kylie's GI doctor's office who informed me that all of Kylie's bloodwork came back completely normal! As I expected! Thank you God! The one enzyme that had shot up to 6,000 is now at 193, which is totally within the normal range. It never ceases to amaze me how very blessed we are.
Kylie started gymnastics camp today and she loved it. Two of her friends from school are in the camp and she had a great time. Her gymnastics teacher who she hadn't seen since before summer couldn't get over how tall Kylie had gotten. She said she couldn't believe how long her legs are. I can't take any credit for that. She owes those legs all to Drew!
Have a wonderful and blessed week. Thanks for checking in on Kylie. Please continue to pray for her continued good health, the health of all children with cancer and a cure for ALL cancers!
love,
Raquel
Tuesday, August 14, 2007 1:07 PM CDT
We had another great (and hot) weekend. We didn't have a whole lot to do, which is exactly the way I like it. We did, however, have the pleasure of attending a Back to School Bash at Acworth United Methodist Church on Sunday evening. Drew was invited to speak to the young members of the church, as well as a cancer group they have at the church. We met so many nice people who had been praying for Kylie for the past few years. To top it all off, we were surprised at the end by a generous donation being made to Memorial Sloan Kettering Cancer Center for Neuroblastoma research in Kylie's honor! What a blessing! Thank you to David Hall and Britni Doyle (and her mom!) for making us feel so welcome.
Kylie's in Cowboy/Cowgirl dance camp this week. I guess I wasn't tipped off by the name of the camp because when I took her Monday morning in her cute purple dance leotard everyone else was wearing cowboy hats, bandanas and cowboy boots! Yikes! Thankfully a friend of mine let me borrow her daughter's pink cowboy boots so that's about as far as Kylie will take it. Next week she's participating in a gymnastics camp - I'm pretty sure cowboys and cowgirls don't do gymnastics.
Christian just got over a terrible bout of diarrhea and throwing up. His first real bug. Looks like Kylie got a touch of it now, but she's doing well. Her latest thing is her trying to sing along with music on the radio. Of course, now is when I have to be extra careful what I listen to although we're usually listening to a DVD or one of Kylie's CD's. Anyway...she's cracking me up by her trying to sing the songs. She swears that "How to Save a Life" by the Frey is "How to Say a Lie". And "I'm Not Here for Your Entertainment" by Pink is "I'm Not Here for Your Reservation". There are several others, but those give you a good idea.
Have a wonderful and blessed week. Please continue to pray for Kylie's good health, all kids with cancer and for a cure for ALL cancers!
love,
Raquel
Monday, August 6, 2007 1:02 PM CDT
We're suffering through those dog days of summer here in Atlanta. It's going to be over 96 degrees every single day this week. It's too uncomfortable to even be outside. It's hard for the kids because they can't even play outdoors very long with the heat and smog. Was it that hot when we were young?? Or am I just too old to deal with the heat anymore??
We finally had a weekend day with nothing planned so we packed up the family and headed about 90 miles south to Pine Mountain, Georgia and enjoyed a hot day at Wild Safari. It's a huge 50+ acre park with a drive-through safari. We were advised to rent one of their vehicles because the animals come so close to your car. That was the best advice we'd received all week. The animals were literally sticking as much of their heads as they could get between the bars of the windows to get to the food we had. Kylie and I both were afraid when we first entered the park because the animals were huge and their tongues would extend about 8+ inches out of their mouths! I swear the ostriches wanted to peck my eyeballs out. They probably scared me the most. After we started driving in and got away from the killer ostriches I was able to start hand-feeding the other animals and finally convinced Kylie to do the same. Christian was feeding them from the moment we pulled in and loved it! Once he had his whole hand inside the mouth of something I can't even tell you what it was. Needless to say, as a mom, I yanked it back in and immediately went searching for wipes and antibacterial lotion! Drew was having a great time driving the clunker van and trying to feed the animals, video tape and, oh yeah, drive! We all had so much fun and we look forward to going back on another day!
Kylie is supposed to be repeating her blood work either this week or early next week to confirm what we already know in our hearts - that her enzymes are back to normal. I'll post results when I get them so you can give thanks and praises along with us!
Have a wonderful and blessed week! Please continue to pray for Kylie and all the other children with cancer. And, please pray for a cure for all cancers!!
love,
Raquel
Wednesday, July 25, 2007 1:06 PM CDT
I thought I'd update you on Christian's visit today to the Pediatric Cardiologist. After an EKG and a check-up, as expected, Christian is fine! The doctor said that of all murmurs to have, Christian has the "best" one you can have. He said they call it a "Still Murmur" and that unless it causes him any problems (i.e. turns blue or passes out - I'd call that a problem!) then we don't even have to follow up! We feel so blessed!
Kylie stayed with one of my friends while I took Christian to the doctor this morning, which was a great thing since after an emergency in the office the appointment took over 2 hours. It was one of the first times at his current age that I've been able to have a lot of one-on-one time with him. He is such a sweet boy. He's so happy and fun to be around. I guess he takes after his sister!
Kylie's reaching an interesting age now too - an inquisitive one. While driving home from the airport on Saturday night, we had the unfortunate and horrible experience of seeing a dog being hit by a car on the interstate (yes, the interstate). I haven't seen anything so awful maybe in my life. Kylie asked 100 questions on the way home and it was so hard to hear some of them. The worst was her asking why we couldn't go back and save him. How do you explain to a 4 year old that a dog has no chance after being hit at 75 mph on the interstate? She prayed for him and finally moved on after about 20 minutes. Then, our neighbors dog has developed a fast growing cancerous tumor on his side and is going to be put to sleep this weekend. The kids told Kylie that he has cancer. That opened a can of worms too. I explained to her that dog cancer is different than her cancer and that it's much worse for a dog. I wondered how that would make her feel knowing she HAD the same disease as a dying dog, but she seemed to take it okay. Parenting is so hard sometimes!
On another note...I wanted to share some fundraising information with you that is no-doubt dear to our hearts. It's called the Patrick R. Chance Fund for Neuroblastoma Research and has been formed through the CURE Childhood Cancer Foundation. Drew has had the pleasure of getting to know Patrick Chance and his father. The Chance family has taken the reigns in raising money directly benefiting Neuroblastoma research! They are holding a golf tournament to help in the fundraising and have asked that we let you know about it. You can find information at www.playforpatrick.com. Please visit the site and see if there's anything you can do to help.
Please continue to pray for Kylie's good health and thank you for your prayers for Christian. Once again, they've worked! Please pray for the health of all children with cancer and a cure for ALL cancers! Have a blessed week!
love,
Raquel
Sunday, July 22, 2007 2:25 PM CDT
The family just got in last night from 8 days in sunny California! We had one night in San Francisco, two nights in San Diego and the rest of the trip was spent in Napa. Horrible, isn't it? Actually, the first leg of the trip was for Drew and I to attend a wedding in San Diego (congratulations Shaun and Nikki Fein!). It was the very first time Drew and I have been away without the kids! Drew's mom met us in San Francisco the first night and drove them back to her house in Napa until we got back from San Diego. We didn't know what to do with ourselves not having the kids with us. I now know what people mean when they say "what did we do before we had kids?" It was eerie! ha ha. The first night in Napa was spent having a long-overdue family reunion with Drew's brothers and their families. Missing was his sister who couldn't make it. It's amazing how you can be apart for so long but pick up right where you left off. It was the first time we met his brother Scooter's two children since they live in Germany. The time together was very short, but Drew's mother was in maternal heaven. She couldn't get enough of the grandkids either. We hated to leave the family and the beautiful weather, but duties call here in Atlanta.
Christian has his appointment with the Sibley Heart Center on Wednesday to check on his heart murmur. I honestly have barely given it a second thought as far as any worrying goes. I just know he's fine.
Last, but not least, I want to wish my wonderful husband a very happy 7th anniversary today!
Please pray for Kylie's continued good health, the health of all other children with cancer and a cure for all cancers!
Have a blessed week!
love,
Raquel
Wednesday, July 11, 2007 12:38 AM CDT
I heard back from the GI doctor's office today. Christian's liver enzyme in question has dropped back down into the completely normal range! Kylie's isn't normal yet, but has dropped from 6300 down to 1034! The GI doctor said again that both their other liver function tests point toward these elevated numbers NOT being liver related so he wants us to follow-up with our oncologist to find out if they want to retest soon to make sure the number returns to normal or to wait until Kylie's next set of labs during her normal workup. Regardless, I'm taking both of these numbers as great news! I know that the next set of tests will be completely normal.
Kylie is at the movies with her friend. She has more social time than I do. Her preschool friend and her mom picked her up to go see "Surf's Up" and then their going out to lunch. I'm not sure she even said goodbye as she was being bucked in and laughing and playing with her friend in the backseat. She's my little social butterfly.
I'll let you know if and when anything else develops. Otherwise, please continue to pray for Kylie, all others with cancer and a cure for all cancers.
love,
Raquel
Tuesday, July 10, 2007 1:15 PM CDT
We took the kids to get their follow up bloodwork done this afternoon. (By the way, Kylie didn't even let one single tear leave her eye. She's so brave!) It has to be sent out to the lab so I'm not expecting to hear anything today. Hopefully we'll hear something tomorrow morning or later tomorrow at the very least. I'm very confident that everything's going to be absolutely fine. I've gotten that peaceful feeling back again. One of my mentors in Christ sent me something yesterday that said we can either have faith in our fear or have faith in God. I thought that was one of the most powerful things I've read in a while. It dawned on me that everytime I dwell on my fears that I'm giving the fear more credit than I'm giving God. I can't do that. Of course I'm human and I'll always worry about my children, but I refuse to live my life like that every single day. I'll post as soon as I get the good news that I expect!
Christian had his 18 month check up today, which meant he had to be stuck with even more needles in addition to his bloodwork today. Poor baby. He's pretty much headed in the same direction growth wise - tall and skinny with a big ole' head. Drew says he gets the head part from me. I guess that means he gets the tall and skinny from Drew...should I be offended? LOL! His pediatrician heard a heart murmur of some sort today and has asked us to make an appointment with our local pediatric cardiologist. Thankfully "Dr. Heather" knows all about those and told me it's nothing to worry about so I'm feeling no stress about it. I figure after having a child that had cancer and one with a gallstone and a heart murmur that we've hopefully been dealt all that we're going to be dealt. We can certainly do this!
Thanks for all of your prayers. I continue to be amazed at how many strangers I run into that approach me and tell me they know about Kylie and have been praying for her for over two years. Even two separate people in Florida approached me about her! I ran into another one today at Kylie's dance class.
Have a blessed week. Please continue to pray for Kylie, for all those who have cancer and for a cure for all cancers. I continue to PRAY BIG!
love,
Raquel
Monday, July 2, 2007 3:55 PM CDT
I'm finally back from travelling. I flew back from Virginia with my sister and my niece and we were here in Atlanta for less than 24 hours before driving down to Florida for a vacation. Just us 4 girls...and Christian. We had a great time. No rain and lots of beach and pool time. Christian is terrified of the sand, which I hear is pretty common for his age. But, he loves the pool and even jumps in and holds his breath under water until I pull him up. Dangerous, I know. I have to keep my eye on that boy at ALL times! We drove back on Sunday after 6 nights in Florida and my sister flew back the same night.
Nothing new to report on Kylie's (and Christian's) blood tests. The doctor said he's going to repeat them in three weeks, which should be in another week or so. We're praying that both Kylie's and Christian's enzymes will be back down into the completely normal range. I'll let you know when we hear anything. Please join us in our prayers.
Otherwise, nothing new to report. Please continue to pray for Kylie's good health, the health of all others suffering from cancer and a cure for all cancers.
love,
Raquel
Saturday, June 23, 2007 6:19 AM CDT
It's been a few days since I've updated because I'm visiting my sister and her family in Virginia. I literally got a call from Kylie's GI doctor while going through security on my way up here. He said that he personally is not worried about Kylie because the chances of Kylie and Christian having the same elevated enzyme level for two different reasons is highly unlikely. He said he does not believe that Christian's elevated level is coming from his gallstone. Also, Christian's level has now lowered from the 1900 number to 1000 (normal is up to 300). So, although he's still high, he's coming down! That conversation certainly made my flight and trip much better!
Then I got a call on Friday from Kylie's pediatrician who informed me that Kylie's test results had finally come in, which is what we've been mainly waiting for. Her 5700 number has now climbed to 6300. He said the breakdown test they did showed that the majority of the enzyme is being produced through her bones. That put us back into panic mode. Drew contacted the oncologist in NY and had the test results faxed to them and he also called the GI doctor. The nurse practioner said that Kylie's main Oncologist was going to take the results to another doctor to review. She said that they're not too worried about it, but want to cover all their bases. The GI doctor told Drew basically the same thing he told us the other day - that he knows that Christian's elevated level isn't related to his gallstone so he is convinced that Kylie's elevation has to be related to Christian's and must be from something else, such as a virus or something. Of course it still doesn't explain why Kylie's is still climbing and Christian's is coming down, but I'm going to take that news and go with it! The GI doc says that his plan is still to retest in about 3 weeks.
My sister treated me to a day at the spa yesterday here and I really didn't want to go because i had heard the news just before going. I figured how could I relax being all worried and stressed out . Then I figured it was probably the best thing for me to go and try to get it off of my mind. During the first treatment I constantly prayed about Kylie and asked for God to ease my mind and let the doctors call and give me some news that would make me feel better. Then, just as I'm starting the second treatment, my phone rings and it's Drew telling me what the doctors had said. It still amazes me day to day how quickly and directly He seems to answer my prayers!
Please pray that Christian's numbers continue to fall down into the normal range and that Kylie's numbers tumble down to normal by the next testing as well. She truly seems healthy in every way. In fact, someone yesterday swore she was 5 or 6 because she's growing so tall.
Please also pray for God to allow the continuation of Kylie's miracle. I thank Him every day for it. Please pray for all children with cancer and a cure for all cancers.
love,
Raquel
Monday, June 18, 2007 9:11 PM CDT
We spoke with Kylie's GI doctor's office today. They informed us that the enzyme that's high is not liver specific and it could come from an area such as the bone, especially since her other liver enzymes were normal. Of course, that doesn't make me feel any better hearing "bone". However, I'm very thankful that the timing of this is just after Kylie's scans which, of course, were CLEAR!!! The peculiar thing that happened today was that we found out that Christian's same enzyme is extremely high too (his is 1900 v. Kylie's 5700 - normal being 0-375). Strangely enough, we were happy to hear that in hopes that it was connected in another way such as viral and not cancer related to Kylie. Then, of course, the doctors have to throw us for another loop telling us that it's very possible that Christian's number is elevated solely due to his gallstone (which is still there in his latest x-ray, by the way) and may not be related to Kylie's elevated number. Are you kidding me?!!
They have now asked the lab to do another test on Christian's blood taken Friday which could narrow it down further to what part of his body is excreting the enzyme. They tried to do the same for Kylie, but as luck would have it, the hospital had already thrown away her sample. So, we are headed back for another needle stick tomorrow and will be waiting for those results (impatiently) all day.
I remember a verse that's always stuck in my mind from the start of our journey and it is certainly coming to light for me today. I can't quote it 100% because I can't remember the actual chapter/verse (please someone refresh my memory), but it was something like "I believe, but help me not to doubt." That's what's going over and over in my head right now as my heart beats out of my chest and my stomach churns with sickening butterflies. I believe. I have faith. I just can never doubt. Faith is all I have and all I need.
Please pray for Kylie's continued good health and that these enzymes quickly return to normal. Please also pray for all the children, adults and their families who are suffering through cancer.
love,
Raquel
Friday, June 15, 2007 9:54 PM CDT
First, can I tell you how pleased I am to only have to erase ONE spam message from Kylie's guestbook tonight?! I finally touched base with the people from Caringbridge who installed a spam filter to try to weed out these creeps who dare to spam children's cancer websites! So, bear with us if you have to do any additional steps to sign the guestbook.
Now to more important news...the doctors from NY informed me that all of Kylie's tests (except the HAMA + or - test which was what the antibody treatment was for) were back. All were relatively normal, except one which was incredibly out of whack. One of her liver enzyme tests came back at a 4300+ where the normal range is 0-350 or so. They figured it must be a fluke because all of the other liver tests came back normal so they asked us to retest today. We did and got the results late this afternoon. The number had actually risen to over 5700! Needless to say, Drew and I have been a basketcase all day today wondering what this means: cancer, liver problems, etc. Of course we were reassured about it not being cancer since we just had scans, but we really didn't know what to think. Thankfully, we have developed such a friendship with our doctors and nurses in NY that I was able to have several e-mails and two very lengthy phone conversations (with psychotherapy included at no charge...LOL!) with my favorite Nurse Practioner at MSKCC and by the end of the second call she had told me that they had spoken with the long term care doctor (how cool is that?! Kylie actually is going to be in "LONG TERM FOLLOW-UP" CARE!!) and he said that it's extremely rare, but they have seen something similar to this before with one test coming back strangely high and the others being normal. The plan at this point is to do a follow-up test in the next week or so to find out if the numbers have dropped. They said it's possible that the elevated number could even be from an old virus from weeks or months ago.
I will let you all know when I find out anything, but I ask that you please pray that Kylie's liver is completely healthy and whole and that her body has and will remain CANCER FREE!!!! Thank you to my friends and family who have prayed with and for Kylie already today.
On another note, as strange as life goes sometimes, the pediatrician who has been so generous in including Kylie in his annual Jog for a Cause race found out that his wife's sister's three year old little boy was diagnosed with Stage 4 Neuroblastoma this week. I spoke with them personally and my heart ached for them as I knew the feeling they were experiencing. It had been less than 24 hours that they found out when I talked to them. I know they are numb and probably don't even remember much of our conversation. I tell you this not only to ask you to pray for little Justin, but also to let you know that it can happen to anyone, at anytime.
Have a blessed weekend and please pray for a cure for cancer.
love,
Raquel
Friday, June 8, 2007 3:33 PM CDT
The final results of both scans are in and, Praise God, all is clear!!!!
Kylie's urine tests should be back the middle of next week. Please pray that her markers are lower than ever!
We fly home tomorrow. Thanks for your prayers!
Have a blessed weekend! Please pray for a cure for all cancers. It sickens me to know that every single patient in a huge hospital like Memorial Sloan Kettering is cancer-ridden. Something I never really thought about before until this trip.
love,
Raquel
Monday, June 4, 2007 12:04 AM CDT
First there was Joel Olsteen...then there was Andy Stanley...now there's Drew Barry! LOL! I have to say how proud of my husband for what he did yesterday. He stood up in front of two church services at the First Baptist Church of Cumming and gave his testimony about his journey as a christian and how his faith has gotten him through the hardships of dealing with Kylie's illness. I knew he would do a good job, but I had no idea that he would be as good as he was. Other than the singing (thank goodness!) and the introduction, Drew ran the entire two services! He said in his speech how he wasn't a very good public speaker. He was so wrong! Everyone complemented him on how well he did and the Pastor said he's never had a first time speaker do so well. Can you tell I'm proud? I told him that maybe this is the start of a calling for him. Or, at the very least, the beginning of carrying out our obligation as christians to share our experience!
Everything else is going great. Kylie starts her summer ballet classes Tuesday morning. She was going to start back up in gymnastics this week as well, but we realized we'd miss so many of those classes due to travelling conflicts that it wasn't worth keeping her in it. However, she gets to start them up again in July for the second half of the summer. She really enjoys the ballet and gymnastics and I love how much it's done for her balance, skills and even her confidence.
Last, but certainly not least, we leave on Wednesday for New York. We have the CT scan on Wednesday, as well as the MIBG (nuclear medicine) injection. The actual MIBG scan is on Friday. They will be doing the urine collection to look for certain markers on Wednesday as well, along with the usual blood collections. She'll get her next round of vaccinations on Friday as well. Thank goodness she gets to be asleep to get those! Usually we get the preliminary CT results on Friday morning and then, unfortunately, we have to wait for the final results as well as the preliminary MIBG results sometime during the next week. Last time we were lucky and everything came back on Friday! It sure makes the trip home much more enjoyable. We KNOW everything will be clear, but it's nice to hear the actual words come from the lips of the oncologists. Please pray for our safe travels as well as Kylie's clear scans and normal markers. We'll be sure to post our praise report as soon as we get any word!
Have a blessed week and please pray for a cure for all cancers!
love,
Raquel
Tuesday, May 29, 2007 2:38 PM CDT
Another dull, yet beautiful, week! We've been spending lots of time at the pool. Even with an SPF of 50+ Kylie's sporting a cute little tan. We went to the Briede's lake house on Sunday and Kylie was either in the water or on the boat tubing the entire time. We spent the night and got up and went tubing again (okay, her, not me...). It still amazes me every day when I see her accomplish things that she couldn't do before. It's not a comparison to other children, it's in comparison to herself.
When I last spoke to Heather (last week) she was feeling worse than before. In fact, she was no longer laughing about the accident. She said her toe was also broken (and cut open with stitches) and that the doctor said her knee probably has serious damage, but they can't check it out til the swelling goes down. She's miserable and feels helpless. I've offered to come and help her but she has the most wonderful mother ever who is waiting on her hand and foot and helping with the kids as well. I plan to go visit this week. Maybe I can cheer up like she used to cheer me up when I would spend weeks with Kylie in the hospital. She has a way of always making me laugh and that's what we do 90% of the time we're together.
We leave a week from tomorrow (June 6th) for scans. Please pray for a safe trip and those clear scans! God has been good to us and I have no reason to doubt Him now.
Have a blessed week and please pray for a cure for all cancers!
love,
Raquel
Monday, May 21, 2007 3:26 PM CDT
8 months of ballet lessons: $450
Leotard, 3 pair of tights & 2 pair of ballet shoes: $80
Costume: $85
Seeing your daughter on stage for only 90 seconds during her first dance recital: PRICELESS!!!!
Yesterday was Kylie's first dance recital and it was one of my proudest moments as a mom yet. I'm sure every parent involved was proud, but knowing what Kylie's been through and what she's now become is something that I can't even put into words. She was absolutely, breathtakingly beautiful. She did a great job and I loved every second she was on stage. I managed to keep my tears mostly inside my eyes, only letting a few escape. Drew was all smiles and happily videotaped her debut. My sister-in-law, Betsy, and my two nephews also attended. We all met her outside the auditorium and presented her with two bouquets of flowers. She immediately started sword-fighting with them (she's not yet a deva I guess) and posed for a few photos that I promise to upload and get to Heather to post soon. We went out to dinner and to make the night a complete Barry celebration, we had ice cream. It was such a wonderful experience!
Now for some slightly (non-cancer related!) bad news...Heather called me while I was on my way home from Hilton Head on Saturday. She told me she had something bad, but funny to tell me. To make a long story short, she got ran over by a golf cart in her neighborhood and broke her foot in two places, injured her knee and possibly broke another place in her leg!! She said she had road rash and actually had tire prints on her body! Can you believe that she was half laughing when she told me this?! Only Heather! Please say a prayer for Heather to have a quick recovery. I can't imagine taking care of my two, let alone four children, on crutches.
Congratulations to our friend Dave Briede who was baptized this past Sunday! He and Drew made a committment to do it this year and both have followed through.
Please pray for Kylie's upcoming scans (June 7th and 8th). And believe that they WILL be CLEAR, CLEAR, CLEAR, as always!
Have a blessed week!
love,
Raquel
Monday, May 14, 2007 7:23 PM CDT
Mother's Day was wonderful, as usual. It's so amazing the fact that I've been given the gift of life twice with my two children. But it's even more special knowing that I've been given the gift of life three times including God's grace in healing Kylie. There was surely a time when we weren't sure if she was going to be around to see the birth of a sibling. And now sweet Christian is over 16 months old and Kylie is as healthy as can be! I have been blessed as a mother more than I could have ever imagined.
Speaking of "blessed"...I've always hated the words "I've been blessed with healthy children". I've always felt like it was like someone saying that God gave the biggest blessing that anyone could ever hope for (having healthy children) to someone else, but not to me. It has always bothered me. Instead, I feel like we each have an equal chance of having children that are, medically speaking, flawed in some way. But, for reasons I can't explain, God felt it in HIS best interest to heal Kylie and keep her here on Earth. I don't know why. However, I do know that I will do all I can to make sure she lives up to every potential God has in store for her.
To all of the mothers out there who have suffered through their first or of many Mother's Day's out there without your beautiful children...please know that I know deep in my heart that God also has a reason that He allows the most special of children to escape this madness on Earth and join Him in his Kingdom in Heaven.
I hope every mother reading this had the most wonderful Mother's Day. Please continue to pray for Kylie's good health, the health of all other children with cancer and a cure for all cancer.
love,
The Proudest Mother on the Planet! (okay, at least as Proud as you!)
Raquel
Monday, April 30, 2007 11:37 AM CDT
We had our 3 month local checkup this week at Scottish Rite. All of her blood counts are normal and Dr. Rapkin said she looks great. She's grown 2 cm since our last visit to him! Next up is our 3 month scans in New York which should take place at the end of May or beginning of June. Then we'll find out if we can start going to 6 month intervals. We're also contemplating having our future scans done here in Atlanta instead of New York. Even though it would be much easier and much cheaper, it's just hard to change hospitals from a world-renown cancer hospital to a children's hospital who as a whole doesn't specialize in cancer. And, of course, Memorial Sloan Kettering has it's own Neuroblastoma team which focuses solely on Neuroblastoma treatment. Decisions, decisions! Prayer, prayer!
Kylie's officially decided that she's done with soccer. She bailed out 1/2 way through the third practice. She came and sat on the side line and told the coach that she just wanted to go home and take a bath because she needed to go to bed early because she was tired. Yeah, right! I wish it were that simple to get her in the bath and bed! She has a gymnastics festival on May 11th to showcase her "skills" and she has her very first ballet recital on May 20th. Just writing those things to you makes my insides well with wonderful emotions. My little girl is a survivor!
Christian is still Christian. He's now climbing up the stairs to Kylie's playset (something Kylie couldn't even do alone when she got it around 2 years of age) and can go down the slide alone too. To give you an example of his personality, he will run away from me, then stop and turn around and look right at me and give me a grin and turn around and starts running again. And he has a temper! Those redheads! He loves anything that looks like a ball and everything IS a ball including apples, tomatoes, canteloupes and anything else in the shape close to a circle. He absolutely loves basketball and constantly wants to shoot the ball in his little hoop. If he sees a net outside a neighbor's house he'll run to that and start trying to throw it up the air. I guess it's in the genes!
Thanks for checking in on us. Have a blessed week and please pray for a cure for all cancers!
love,
Raquel
Monday, April 23, 2007 11:45 AM CDT
As we start day one of another year that Kylie is cancer free, I felt a prayer of thanks is fitting.
Psalm 138
1 I will praise you, O LORD, with all my heart;
before the "gods" I will sing your praise.
2 I will bow down toward your holy temple
and will praise your name
for your love and your faithfulness,
for you have exalted above all things
your name and your word.
3 When I called, you answered me;
you made me bold and stouthearted.
4 May all the kings of the earth praise you, O LORD,
when they hear the words of your mouth.
5 May they sing of the ways of the LORD,
for the glory of the LORD is great.
6 Though the LORD is on high, he looks upon the lowly,
but the proud he knows from afar.
7 Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against the anger of my foes,
with your right hand you save me.
8 The LORD will fulfill his purpose for me;
your love, O LORD, endures forever—
do not abandon the works of your hands.
***************************************
Friday, April 20, 2007
I apologize for the longer and longer times in between updates. Actually, that means life is good and very normal for us and we have nothing very interesting to share with you.
Kylie had her first soccer practice last week. It didn't go as well as expected (LOL!). First, she hung on to my legs for the first few minutes. She also ran off the field a few times during the practice. Twice she lost her ball and just stood in the middle of the field, but could care less about not having one while the other 28 kids practiced their drills. After a few minutes, the coach asked her where her ball was and she just shrugged her shoulders. She told me she didn't want to go back, but we talked her into giving it one more try. The Briede girls gave a few pointers and Drew took her yesterday for practice number two. He said she did much better and at least stayed on the field this time! I don't think she's going to be my athlete in the family, but that's okay. We really just enrolled her in soccer so she could get extra help with her coordination and balance.
Our friends the Briede's volunteered at the Lighthouse Family Retreat over spring break. Cathy, Dave and their two oldest (Taylor and Belle) spent their entire spring break down in Florida catering to a family with a child with cancer (there were 16 families total at the retreat). Even though they were there to help others have a good time, they said it was the most amazing and rewarding experience they could imagine and plan to go back. I just want to thank them for giving their time and efforts for such a worthwhile cause. Even though we know their hearts are in serving others, we also know that a large piece of their heart will always carry Kylie in it which makes us feel that they also did this for her.
We have a special celebration this weekend. Sunday, April 22, marks Kylie's two year cancer free mark! I can't express to you how it feels to be able to say that. We have been so blessed!!!! If you think about it, please say a special thank you to God for Kylie's healing.
Have a great weekend and please continue to pray for Kylie, other children with cancer and a cure for all cancers!
love,
Raquel
Thursday, April 12, 2007 1:28 PM CDT
Another Easter come and gone. The only reason I was glad to see it go was because of the artic weather it brought in with it! It was hotter on Thanksgiving and Christmas here than it was in the springtime on Easter! Kylie went to church with us on Friday night and actually sat through the service with us for the first time. She kept saying "Mommy, I'm in the adult church. How cool is that?!" The Easter Bunny was good to her and Christian. She got some more Princess stuff, a new horse (the 6 inch plastic kind!) and rider and the movie Flicka. I don't know if I've mentioned this but she's going through a huge horse phase right now. Constantly I hear her say to the neighbor kids "do you want to play horse!?" and they politely say "no...." after they've played it 100 times already.
The kids had their check ups today. Kylie's now in the 75% for both height and weight!! That's a miracle in itself! Chemo and radiation can definitely stunt your growth. Christian is 25%-50% in weight and 50%-75% in height. Big shocker on both of those with Drew being over 6'4"! Other than 3 shots for Little Man, both children had great checkups!
Oh, one last thing...Kylie starts soccer today! I'll give you details later!
Have a blessed week and pray for a cure for cancer!!
love,
Raquel
Thursday, April 5, 2007 8:15 AM CDT
I'm sorry I haven't updated in a while. We've been enjoying the wonderful weather and having a great spring break. Of course, we didn't go anywhere this week. It's almost impossible for Drew to take time off of work with all the days he misses for our trips to NY. We know that will change in the future when the doctors know what we know - that the cancer is NOT coming back! Until then, I believe we have our next set of scans in May and then we should be starting our six month interval scans at that point! That will help us in many ways - financially will be one of them! Those trips to NY are quite expensive, but well worth every single penny.
We're getting ready to celebrate Easter weekend. After all these years, it took me until last year to realize what the true meaning of Easter is. We all think that Easter is about Jesus dying on the cross as payment for our sins. Yes, that part is true and it is the most amazing gift we have ever received. But the true meaning of the day of Easter itself is what happened on the third day after Jesus's crucifixion: the incredible miracle of Jesus being risen from the dead and ascending into Heaven! So please remember to be thankful for what He did by giving His life for us and also remember to celebrate the miracle of his rising! A promise fulfilled!
Have a wonderful Easter weekend with your families. This is a weekend to really remember how blessed we truly are!
love,
Raquel
Friday, March 23, 2007 11:28 AM CDT
Kylie had a wonderful 4th birthday! We had a party for her at a farm yard here in Alpharetta called "Holy Cow Farm" (I totally recommend it!). There were animals everywhere: pigs, peacock, ducks, small horses, big horses, a chinchilla, rabbits and more. The kids loved petting all of them and each child got to ride a horse! We had promised Kylie for a long time that she could one day have a "pony party". When Drew talked to his friend about Holy Cow Farm, we knew it was the place. Her entire preschool class was there, as well as some of our friends' children. There were so many kids that we ran out of spaces for more! Kylie received an extra special surprise - her "Nonni" (Drew's mother) flew all the way in from California to be there for her party. After getting a manicure with Nonni on Saturday evening, Kylie was a pretty little princess for her party.
Drew was stuck in NY for two extra days because of weather and he didn't think he'd make it back for Kylie's party on Sunday afternoon. He told the airline that "it wasn't an option" to fly out on Sunday late afternoon. Thankfully, they felt sorry for a sad daddy and they put him on a flight early Sunday morning. He didn't arrive home until 2 am, but he was more than happy to do it to be there for Kylie's party.
Christian's great. Kylie's great. We're all great! Life is SO darn good that I feel more than blessed. I have absolutely everything I want and need in life and the feeling of being content is indescribable. Kylie's journey has changed our lives for the better in many ways. We are more thankful and happier than we've ever been. It teaches you to appreciate the little things and to not worry about even the big things so much.
Please continue to pray for Kylie's continued miracle, all of the other children that have cancer and for a total cure for all types of cancer!
Have a blessed week!
Raquel
Sunday, March 18, 2007 7:12 PM CDT
Happy 4th birthday to our precious Kylie! We thank God for every single day of these past 4 years!
Raquel and Drew
Sunday, March 11, 2007 4:10 PM CDT
First, I have to say thank you to all of you who braved the cold and rainy morning on Saturday to join us at the Jog for a Cause race. We were so disappointed in the weather because these races get a lot of same day registrants. I don't know what the final numbers were yet, but I do know that the pre-registered numbers were higher than ever before!
We saw people at the race that we've known for years and even people that have never met Kylie (and many in between!). Even several of her preschool classmates were there! For those of you who came, I want you to know that spending that one morning there for Kylie meant more to our family than you'll ever know.
And for the drama of the day...my sister, Rhonda, brought the kids up to the race later since I had to be there at 5:30 a.m. She said Christian had been crying pretty much all morning since he woke up. He didn't calm down very much even after I took him from her. A very sweet girl I know (who happens to be my last boss's daughter) is in her last few months of med school and looked in Christian's ears for me - right there at the race (thank you Susan!)! She said they looked red and I should probably take him in to be seen. He finally fell asleep and when he woke up he was burning hot and his temperature was almost 105!!!!! I called Urgent Care and they told me that because of his high temp and because he has what they consider "medical history" because of his gallstones that I had to take him directly to Scottish Rite where I spent the rest of the morning and afternoon. His temp lowered to 104.2 at the hospital after Motrin, then down to 103 before I left. They said his ears were infected and that was the probable cause of the fever since they couldn't find anything else. You know that Drew and I were worried sick because that was exactly how Kylie's ordeal started - fevers up to 106 for no apparent reason. High fevers will haunt us forever! His fever did go down yesterday, but he's back up to 101 today. He seems happier so that's all that matters really.
Of course Drew was out of town for all of this, but thankfully my sisters and Bobbie were there to help me with Kylie back at the house while I was at the hospital. The only "positive" to Christian being sick was that Mommy got to have him cuddle and sleep in my arms for literally hours as I waited in the emergency room with him. I could have sat there all night like that.
Thanks again to all of you who came out to support the Jog for a Cause, as well as those of you who sponsored or donated. Now you all get about 8 or so months off until you have to hear me talk about it every day again!
Continue to pray for a cure for cancer! Have a blessed week.
love,
Raquel
Monday, March 5, 2007 3:52 PM CST
Thanks to all of you for wishing me a great trip. It worked! I had a really good time. Seven friends (including my sister who I'm lucky enough to be my best friend!) getting together laughing, crying and just being ourselves all weekend. I must admit, I missed my family SOOOOOOO much. I don't think I was prepared for how much I would miss them. I wanted to hear their voices 20 times a day.
We had what I thought was a complete "God Moment" while we were there. Us girls were sitting around talking about Kylie and how we were so convinced of her healing, but that we hadn't gotten the rest of her results back from the hospital in NY. So, Heather suggests that we all hold hands and say a prayer for her. Litterally, at that very moment, as I'm holding hands with these beautiful women, my cell phone rings and it's Memorial Sloan Kettering calling me to tell me that every one of Kylie's test results came back absolutely NORMAL. Are you kidding me? Hello?! Sometimes it still amazes me how I ask something and He takes the time to answer me so directly! Little ole me! We all cried and then I had to call Drew and my friend Cathy to share my incredible moment.
If any of you remember my roadtrip back from Destin last summer with Heather, it was a nightmare at best (took us 12 hours total, we were totally lost, had a blowout, I got back at 2 am in the middle of July with my home air conditioning completely out, etc....). Well, this trip had to have its drama too. First, we were foolish enough to leave in the middle of Thursday's tornados. We had to stop for over an hour in Columbus to escape several cells. Then, after thinking we were safe to get back on the road Heather was forced to pull over 3 times because it was impossible to see in the rain. That was the easy part. We came up to what we thought was a road block in Cottondale, Georgia. Heather scrambled for her license and we all made sure we had our seatbelts on. The police officer (very confusingly I might add), motioned us around the 3 police cars. He never really told us to stop or to go. So, we crept by. As we look over to the right where we thought they were doing a field sobriety test on someone we look at a man dead in the middle of the road covered from head to toe with a sheet. Let's just say the car was silent for the next hour. It was horrific. We all took turns trying to think of a better story for how he died than the obvious, that it was a hit and run fatality (there was no car in site other than ours and the three police cars). Heather did see on the news later that it was in fact a man killed by a hit and run.
Okay, now that I've ended on such a sad note...I will say that we had a great time. There was lots of evidence created by Emily who had her paparazzi camera going off non-stop. It was one of those trips like on that Vegas commercial on TV where the girl throws the camera in the water at the pool the next day. Thanks to Rhonda, Heather, Tamara, Emily, Tina and Sandra for the wonderful memories!
Go to www.jogforacause.com. It's Saturday!
love,
Raquel
Wednesday, February 28, 2007 1:48 PM CST
I thought I'd pass along more good news to you. Kylie's final CT and MIBG report are all clear!! Plus, the bone marrow biopsy is in and it's clear as well! We're still waiting on the bone marrow aspirate (fluid in the marrow), but we know that will be clear too. Thank God for more answer to prayer!
I'm venturing out on Thursday for my first weekend girls trip! Heather and I and about 6 other girls are going to Destin for a long, kid-less, husband-less weekend. Even my sister, Rhonda, from Virginia is flying down to come! I know it's going to be a blast, but, of course, I'm already missing my family before I leave. I know when I took that one night trip to Savannah I ended up having a great time, but it's the anticipation of leaving them that's hard. Please pray for safe travels for us all!
Weekend after next is Jog for a Cause! (March 10th). Please go to www.jogforacause.com to register now. Even if you can't make it you can use your registration as a donation to the wonderful causes it supports. My sister's flying down again next weekend to join us for the race. I'm so thankful for all the support our family has. I hear we already have more early registration runners than ever! We hope many of you can make it and get to see or meet Kylie in person.
Have a wonderful, blessed week and pray for a immediate cure for cancer! It can be done!
love,
Raquel
Saturday, February 24, 2007 3:39 PM CST
We're finally home and settled back in. To get straight to the reason most of you are checking in...the preliminary results of the CT and the MIBG are clear! It wouldn't be normal if there wasn't some sort of drama, however. Her lymphnodes were once again swollen, but just like last time she has a cold so they weren't overly concerned but wanted to make sure with the scans. There was also some mention in the CT report about a "questionable cyst" in the abdomen. The nurse and doctor told me it's pretty standard language when they see something that's not necessarily supposed to be there. We waited to get the MIBG scan back to make sure nothing lit up in the abdomen. It didn't. Meaning, as the doctor suspected, it was scar tissue that they saw on the scan. So, I have to give my public shout out to God and thank Him for these latest set of clear scans! I also want to thank Darrell in my small group who sent me a list of verses to remind me to trust in Him. I printed it out and read it over and over as I waited for Kylie during her first scan.
The doctors told us that Kylie will go to 6 month intervals for scans at the two year mark of her first antibody treatment. I believe that should be after our next scans! It's exciting to know that she's made such a wonderful milestone that they feel comfortable going to every six months. But, it's also a bit scary to wait so long. I'm going to focus on the exciting part and try not to dwell on the scary part!
The trip was great. We saw our wonderful nurses (who are also our friends) and doctors and caught up with a few patients we know. We were even able to have dinner with Drew's uncle while he was in New York. We were finished with the scans on Friday, but decided to leave on Saturday so we weren't rushed. So, as our lastest treat to Kylie for her bravery we took her to M&M'S WORLD!! (Or as she says, M&N World.) Yes, there is such a thing! It was such an adorable way to rip you off from all of your money, unlike all of the other ways we've discovered in New York. Kylie was able to fill a bag with M&M's that came out of shoots that went up to the ceiling. They had probably 30 different colors in both plain and peanut. She was in M&M heaven.
We're still waiting for the final report of the CT and MIBG scans, as well as the bone marrow biopsies and urine tests. We KNOW they'll be 100 erfect!
Thanks for your prayers. Please continue to pray for Kylie, all of these children with cancer and that a cure for cancer is found SOON!
love,
Raquel
Tuesday, February 20, 2007 7:23 AM CST
Good morning. I'm starting to think that the evil one is trying to make me doubt my peaceful feelings about Kylie's cure. He knows I believe that God healed Kylie so he's trying to make me question it. First, I've read that a child that receives treatment in New York has relapsed in his brain - just shy of his two year cancer-free mark (which is exactly the same point where Kylie is today, she'll be cancer free for two years on April 22). If you don't know this yet, relapse in Neuroblastoma is, blatently put, basically a death sentence. We were told this from the very beginning which is why it's even more sad that there's such a horrible relapse rate and such a high mortality rate for Neuroblastoma. Secondly, I've been reading on several of our cancer friends' sites about the cuts to cancer research, specifically clinical trials. I've attached a link to view the video from ABC News:
http://abcnews.go.com/Video/playerIndex?id=2879611
The end of the video specifically says that one of the areas most affected will be rare childhood tumors. I sat crying as I watched this video and seeing that, coupled with yet another Neuroblastoma relapse - is where the pit in my stomach comes from. I ask you all to please get involved. Write your congressmen. Write ANYONE and EVERYONE that you can think of that could lobby against this and make a change. Don't wait until it happens to your child or someone you love before you get involved.
We leave tomorrow (Wed) for New York. Again, please continue to lift Kylie up in prayer and BELIEVE.
Kylie and I both have pink eye. I didn't rememeber how much pink eye stinks to have. Christian started getting it last week, but we were able to clear it up quickly with drops. We're not sure if it's possible that we got it from him (a week later) or if we got it somewhere else. After all the needles and pain, Kylie absolutely hates her eye drops.
Don't forget to register for www.jogforacause.com. If you can't race and want to help, sign up anyway. Your $15's will go toward several great causes! We will make sure you receive your t-shirt. Either mail your check in with a note that you won't be there, but would like a shirt mailed to you or register on-line via credit card and then let me know so I can make sure you get your shirt.
Thanks for checking in on Kylie. Have a blessed week and remember to pray for a cure for cancer.
love,
Raquel
Friday, February 16, 2007 1:14 PM CST
It's never to early to start asking for prayers! Believe it or not, three months (and a little more) has gone by and we leave Wednesday for New York for the latest round of scans. This time she will also be getting a bone marrow biopsy. I almost wrote "we will". Funny, I feel like we're all in this together. Seeing your child hurt, you hurt too. If you could please begin lifting Kylie up in prayer for clear scans and marrow, we would be grateful. I have such a peace in my heart about this that I can't explain. I have no doubt that the scans and marrow will be clean and that she will forever be cancer-free. However, I will never stop asking God for it!
Drew is busy with his ESPNU work. In fact, he's missed Valentine's Day and will miss his birthday (2/17) because he's been announcing games. I still don't see how he does it with a full time job and keeping his obligations to his bible studies. Funny part is that he never complains. Never.
Christian is finally walking! He had a visit from his nephew, Cade, from San Antonio last weekend and saw him basically running around (Cade's a few days younger than Christian). Christian figured he better step it up and he started walking all the time within the next few days. He still gets his share of bumps and bruises from falling, but for the most part he's a full-time walker.
Kylie had a great Valentine's Day. Daddy made it extra special for her by giving her some special (non-sugar related) gifts. My father used to always make his girls feel special on Valentine's Day and I asked Drew to carry on the same tradition (not that I had to...).
Have a wonderful, blessed weekend and please pray for a cure for cancer.
love,
Raquel
P.S. Nikki S., this new update is just for you. I can't bear the responsibility of your boredom in France! ; )
Sunday, February 11, 2007 3:37 PM CST
We had such a wonderful time in Virginia. The only negatives being the four sets of stairs in my sister's beautiful home and the plane ride home. First, my sister's stairs were too wide for gates to fit so poor Christian was basically confined to the kitchen and keeping room. Oh, and I forgot to mention that Christian scribbled marker on my sister's couch and also got into paint which was hidden behind an easle in the guest room. Funny thing is that they were both blue. Thankfully, my sister is much more laid back than I am and she gave me no grief about it. The plane ride home was a nightmare. Not only was Christian cranky and his usual extremely active self, but Kylie was overtired from too many late-nights and actually cried for about 30 minutes straight before finally nodding off. And, of course, even though I made SURE that she used the bathroom just before we got on the plane, she had to go on the plane too. Try holding a squiggly infant and trying to get your 3 year old on a toilet inside a 2 x 6 airplane bathroom. And, of course, it wasn't pee pee.... Having said all that, it was worth every minute of it. We had such a great time together. Besides being away from Drew, the time was way too short.
I am such a proud wife today. My wonderful husband made the big plunge (no pun intended) at church today and was baptized in front of thousands of people! Everyone who goes to North Point knows that you have to film a video to be played in front of the entire church explaining how you came to this decision. Just doing that takes nerve! It's obviously a way to glorify God and recognize his Son, but also to help others who are trying to make the decision on whether to accept Christ as well. Drew's message was a wonderful testimony to Christ's work in his life and it brought me to tears. What a wondeful day!
Have a blessed week and don't forget to pray for a cure for cancer!
love,
Raquel
Thursday, February 1, 2007 9:50 AM CST
We're having one of those days today that I love. It's cold and rainy and there's actually ice on the ground. And, better yet, besides taking Kylie to gymnastics earlier this morning, I have no where I have to be! That's such a great feeling. I was secretly hoping the whole family would get snowed in. I mean, if it happened in Texas this year, certainly it can happen in Atlanta, right? I think we're due for a good blizzardy inch of snow this year.
I'm doing something next week that I may wish I hadn't. I'm attempting to travel with both kids ALONE. Kylie's at that great age where you give her a DVD player and ear phones and she's good to go. Christian on the other hand...he won't sit still for a minute. I'm sure I'll be walking him up and down the aisles and praying that the fasten seatbelt sign stays OFF. The poor people next to us, in front of us and in back of us are going to wish they hadn't taken that flight. We're flying to Virginia to see my sister and her family. It's only about a 90 minute flight so figure I can make it. Pray for me, please!
Unless something's changed that I'm not aware of, 48 Hours Mysteries is supposed to be doing a story on Heather's sister, Jennifer, this weekend. For all of you who felt like you got to know Heather from her postings for us when Kylie was first diagnosed, this will be your chance to see her in "person" on TV. Heather called me to tell me that Kylie will be mentioned in the book that Ann Rule has written about Jennifer's murder. I told her that it really bites that this is how both of our families had to be on TV and in books. Life was just so much simpler before 2004.
Register today for the race. www.jogforacase.com. It's a great way to help out when so many of us feel helpless.
Pray for a cure for cancer TODAY.
love,
Raquel
Friday, January 26, 2007 11:19 AM CST
I've been struggling to find a journal entry this week. I've been thinking about Catie and the Wilkins family. It bothers me how when people die, life just goes on around them like nothing ever happened, even though a family's life has been turned upside down forever. I went to two stores this week that only fueled my issues over childhood cancer research. First, I went into Whole Foods and they were donating 5% of their funds one day this week to PONIES! Yes, they're cute little ponies and they visit the elderly and I LOVE animals. But PONIES?!! Then, I went to Gap and they're donating money from sales of an item to children with AIDS in Africa. Again, I have love for the women and children with AIDS in Africa, but if you remember my earlier post with statistics, there is already far more money going to pediatric AIDS research than pediatric cancers, even though there are far more cases of childhood cancer!! I will end my ranting here. It's obvious that I'm angry and I won't stop until there's a cure.
Everyone in our household is doing great. Now, doing great means HEALTHY! The other junk is almost meaningless now. Christian's trying so hard to take his first steps. He goes for one, then falls down. He should be there any day now. Kylie's doing great and she's having her first afterschool playdate today with a boy in her class who she refers to as her "boyfriend." Of course, we already have her promised out to at least two other boys so they may have to fight for her. She's starting to write her name and is having fun in school.
We're still working hard on getting the Jog for a Cause together. We're so excited at the response we've had from friends and friends of friends who are sponsoring and running! I've even had individual people contact me who wanted to make donations even though they don't represent companies. How cool is that?!! We still need RUNNERS, RUNNERS AND MORE RUNNERS! If you want to help out, running is a great way to do it! It's March 10 here in Alpharetta. Please go to www.jogforacause.com to register online.
Continue to pray for a cure for all cancer and that it happens TODAY!
love,
Raquel
Friday, January 19, 2007 10:39 AM CST
I noticed that someone had signed Kylie's guestbook to tell us if we didn't know already about Catie Wilkins and asked us to pray for her and her family. We know Catie very well. We met Catie back when Kylie was diagnosed in 2004 and shared several inpatient stays at Scottish Rite. Catie was admitted to the PICU last week with breathing problems. We visited her and her family on Saturday. Unfortunately, Kylie wasn't able to say hello because children aren't allowed in the PICU. I've been checking Catie's site 10 times a day, every day, to find out how she's been doing. I checked it at 8 am this morning and read that the doctors said there was little hope for her. I checked it again at 10:30 this morning and I read that she passed away last night. I can't tell you how broken my heart is. Catie's mom, Jenny, is due to give birth very soon with their second child. I can only imagine how hard this is on her and her husband. Please pray for them as they mourn their baby girl. If you'd like to leave them a message, Catie's site is www.caringbridge.org/ga/catie. Jenny has some beautiful things to say even at such a hard time like this.
I sat and cried at my computer for a while this morning after reading the news. I then cried in the shower for a while afterward. Then I started getting angry. I'm so tired of these precious children suffering and dying from this disease. There has to be something done. I want to pass on a few statistics for you that I've been sharing with others while trying to get the Jog for a Cause race going:
More dollars continue to be cut from research programs across the country as the government continues to reduce medical research spending. Additionally, although we continue to see children in advertising for the American Cancer Society, less than 4% of those funds actually go towards pediatric cancer and sadly, less than 10% of even that fraction will be put to use towards Neuroblastoma, which at this time has a very low survival rate. That is approximately 40 cents for every $100.00 raised. Even the larger pediatric cancer organizations have difficulty getting research dollars into the hands of those that need it most.
Additionally:
• Cancer is the number one disease killer of children in the United States.
• Neuroblastoma is the most common cancer found in infants; almost double that of leukemia, and the most common solid tumor cancer in children, second only to brain tumors.
• Childhood cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.
• There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS and yet the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood.
This entry is not to promote giving to Neuroblastoma research over any other type of childhood cancer, but to let you know how little funding is available for pediatric cancer. I'm continuing to pray every day for a cure for cancer and I won't stop until there is a cure.
Goodbye sweet Catie. Say hello to Keith, Hayley, Ethan, Macey, Brent, Bailee and all of the other little angels in heaven we've lost in the past two years.
love,
Raquel
Thursday, January 11, 2007 10:32 AM CST
We've been enjoying the start of the new year. We celebrated Christian's 1st birthday on the 5th with some friends and their children and my little sister. Christian loved digging into the cake. The cake had blue and red icing and he pooped green for two days straight! LOL!
Kylie had to go the ENT for the third time in the last month. It's the second time that one of her new ear tubes was leaking gross, smelly fluid. The first time it cleared up by itself and the second time we had to go in and get it suctioned out and she was on ear drops for a few days. She hated the suction and was happy when we went back the third time that it had cleared up again. They said that sometimes this happens and we just have to keep treating it. Yay. Didn't we get ear tubes so we didn't have to treat her ears??
Drew and I are trying our best to get sponsors, runners and volunteers for the Jog for a Cause race on March 10th. You'll probably get sick of me mentioning it every posting from now until then. We're just so grateful for the help we've received from the race and we want to do our part to give back. Again, check out www.jogforacause.com for information and to sign up and let me know if you want to be a sponsor or volunteer. I'd love to get a "Team Kylie" for the race and have t-shirts made again. We'll have to check into that in the next few weeks.
We're still praying for our friend, Caroline Johnson, (www.caringbridge.org/ga/carolinejohnson), whose family still isn't 100% sure if she's relapsed or not. It breaks my heart that their having to suffer these next few weeks in fear. I just don't understand why the hospital wouldn't get them in ASAP to rescan her. They're actually having to wait for a few weeks and then the scans are spread out over several totally different days. Please pray for Caroline's health and for this family as they go through this. I've seen God at work first hand and I know He can remove it between now and the next scans if it's there at all.
Our pastor at North Point Community Church, Andy Stanley, did a great message last Sunday. He said that God doesn't necessarily want or need us to pray for the little things that He will be taking care of anyway. But He wants us to pray BIG. Scripture says He can move mountains and He wants to do that for us. So, Drew, Kylie and I are not just praying for Kylie and these children to be healed. We're praying for a cure for all cancer and we're asking for it to be granted immediately. We plan to continue to ask this prayer every single day until God is tired of hearing it and gives in and grants it! So, please join us so we can stop seeing our mothers, fathers, sisters, brothers and our precious children suffer from cancer.
Have a wonderful, blessed week!
love,
Raquel
Monday, January 1, 2007 12:37 AM CST
I have been meaning to update since Christmas day. We've been able to spend some wonderful quality time together as a family. Drew was able to spend a few extra days at home from work and it's been nice doing much of nothing.
We had a wonderful Christmas! We loved being at home together. Kylie was so excited about Santa. We woke up before she did, believe it or not, and I had to sneak downstairs to get Christian's bottle before she woke up. Drew said "she's moving around, hurry up!" so I had to run back upstairs and pretend to be asleep again. She didn't ask any questions on why Christian was lying in our bed drinking his bottle if we were still sleeping. She crept in our room, tapped me on the back and with the most serious look on her face she pointed downstairs and said "he came, he really did, he came." Not loud or excited, just really calm and serious. It was too funny. She loved all of her presents. Her Nonni (Drew's mom) got her a white and pink Mustang convertable motorized car. Kylie loves it and she looks hilarious driving it around. If you ask her what her favorite gift is she says her Dora soft bat and ball. Santa got lucky on that one for $9.99!
We had Christmas Eve dinner here as a family and then we went and spent a few hours of Christmas day with Drew's brother's family. It's nice finally having family live nearby. The only bad thing over the holidays is that everyone, besides me, was sick. Christian had his 2 week ear infection re-check and they found that the other ear is now infected and the first ear still had puss in it. So, he's back on antibiotics. Kylie had a 101-103 temperature for three days and her left ear is leaking fluid again. And, last, but not least, Drew developed strep throat and had to go to the doctor on Christmas Eve so he's on antibiotics as well. I've never seen him so sick for so long. He's normally one that denies he's sick. Again, thank you God for keeping Mom healthy!
We were invited to a few parties on New Years Eve, but as you all probably know, finding a babysitter on NYE is just about impossible. So, we hung out here at the house and Drew and I actually broke out the Scrabble game around 9:30 pm. Exciting, huh? Actually, we had some friends come over just in time to save Drew from losing to me in the Scrabble game (he HATES to lose, trust me) and we actually drank champagne and stayed up until past midnight! First time in a few years we've been up past midnight on NYE, I must admit!
On a more serious note, one of our Neuroblastoma friends that I asked you all to pray for when she had scans last week has possibly relapsed. We're now praying that the upcoming follow-up scans show that the first scans were wrong (it does happen believe it or not) or, if not, that she can beat this horrible disease again. If you'd like to check on her or drop her parents some kind words, her site address is www.caringbridge.org/ga/carolinejohnson.
The annual Jog for a Cause race is coming up again on March 10th. I'm trying to devote time to help make this race an even bigger success. It's in it's 4th year and is growing larger every year. The race is always in need of sponsors and, of course, runners. If anyone is interested in having their company (or an individual) become a sponsor, please let me know. The race benefits the Lighthouse Family Retreat, a Christian organization whose mission is to help families of children with cancer; the Keira Grace Fund and, of course, Kylie's medical care. I plan to post more information soon. Please let me know if you're interested in being a sponsor. The website is www.jogforacause.com.
Last, but not least, Christian's birthday is Friday. My little man is going to be one!
Have a wonderful, blessed New Year!!
love,
Raquel
Monday, December 18, 2006 10:42 AM CST
I can't believe it's the week before Christmas. For those of you who don't live in Atlanta, it's been about 72 degrees here the past week or so. It's been great to be able to get the kids out and play every day, but I am desperately waiting for the cold weather to come!!! Darn you El Nino!
It's Christian's turn to be sick again. I took him to the doctor last week with a deep cough and they said it was viral and that he had his first ear infection. Then, yesterday he developed a 102.9 temp and isn't sleeping well. Kylie had her ear tube and adnoid removal recheck and her doctor said everything looks great.
I've been busy baking for the holidays. Drew asked me to make him cookies for his work party last week and our small group is gathering for a gift wrapping party on Wednesday night that I'm now baking for. It's been a little harder this week with Christian being sick, but it will get done.
Have a wonderful blessed week!
love,
Raquel
Monday, December 11, 2006 7:01 PM CST
I made it back from out of town without having any type of nervous breakdown from missing my children. In fact, I had a great time! The four hour drive to Savannah went by quickly having my sister, Rhonda, to talk to. Sometimes those boring drives make for the best talks. We both cried watching my little sister as she walked up to receive her college diploma. I remember taking her to school for her first day of kindergarden just like it was yesterday. I'm so proud of her! That night, the three of us and Renata's friend, Bobbie, went to dinner and hung out the rest of the evening. We had so much fun! I honestly can't remember when I've packed so many laughs into such a short amount of time. We even decided to crash a wedding that was being held at the hotel (I had just watched the movie "The Wedding Crashers" before I left and thought it was a great idea at the time...), but we laughed so hard at making up our names and occupations for our "covers" that we never actually crashed anything. We hung out in our adjoining hotel rooms until the wee hours of the morning and still managed to have a great, but tired, drive home.
Everything was a complete trainwreck here at the house with me being gone. Okay, I'm kidding. Everything was great, of course. I came home to sweet Christian who was with the babysitter. Kylie and Drew were at their "Tea with Santa" event. They had a great time. The pics were adorable. I was sad to have missed it, but also glad they were able to share it together.
We have two friends coming up for scans this week. Please pray for Caroline (ga/carolinejohnson) and Chandler (ga/chandlerbooth) as they and their parents endure the stressful two days of scans on Dec. 12th and 13th.
Have a blessed week!
love,
Raquel
Tuesday, December 5, 2006 6:58 PM CST
This has kind of been a "no news is good news" week for us. Kylie has recovered more each day from her surgery. She still sounds slightly stuffed-up, but seems to feel just fine. The doctor confirmed Christian did have the croup afterall and she put him on a oral steroid for three days. The strange sounding cough and sneezing is gone, but he's still congested. I guess with a preschooler in the house this is what you expect during the winter season.
Christian is becoming such a handful! I never expected him to be so physically active. Kylie was nothing like him. My mother-in-law tells me that it's because he's a boy. Obviously, I didn't have that experience until now (she had it four times). He's crawling on and climbing up anything and everything. I spend my day chasing him around and saving him from imminent danger. He fell down about 6 stairs yesterday. He's figured out how to move the gate and loves to climb up them. My day is full of anxiety between racing to toilet bowls, stairs, dog food bowls, the fireplace and anything he can climb up or under. No matter how much "trouble" he gets into, all he has to do is flash that incredible smile and he's off the hook. Sounds like he has something in common with Kylie afterall.
I am spending my first night without my children this weekend (sigh...). I am driving down to Savannah with my sister, Rhonda, to attend my little sister Renata's college graduation. I know most mom's would be excited to have a night away with the girls, but I am kind of down about it. I'm sure it will be a great time, but I hate not being able to kiss my little ones goodnight and tuck them in to bed. I know Drew will do a great job, of course, but I'm not worried about them - it's me! I look forward to spending the time with my sisters and to celebrate my sister's big day, but it's a first that I have to get over. Oh, and did I mention that I'll miss being able to take Kylie to "Tea with Santa" at the Ritz Carlton in Buckhead on Saturday morning? You know Drew's so broken up over the fact that he HAS to take her (note extreme sarcasm....).
Please continue to pray for Kylie and remember to be thankful for her most glorious miracle!
Have a blessed week!
love,
Raquel
Wednesday, November 29, 2006 9:50 AM CST
Kylie's surgery went well yesterday. I expected as easy of a recovery as when she's received ear tubes in the past, but with the added adnoid removal, the recovery has been a little rougher for her. She slept most of the day yesterday and became extremely congested after the surgery. Her nose is pouring out constantly and she's just not herself. But, all things considered, she's fine. Thank you for your prayers.
Christian's now under the weather and I'm taking him in this morning. He sounded like a seal this morning, but he's not coughing so I guess it can't be croup. And, to make matters worse, Drew's sick. But I'm still thankful for two things: one, that they're all sick at once so they can all get better together and not spread it around; and two, (and maybe most importantly) that MOM'S not sick so I can take care of them all!!
I want to congratulate my husband for his very first TV announcing job last night! He was hired by ESPNU to do some college basketball games and last night he did the announcing for the Georgia Tech basketball game. Of course, all this AND having a full time job and being a great dad. He's amazing!
Thanks for checking in on us. Have a blessed week!
love,
Raquel
Saturday, November 25, 2006 8:47 AM CST
We've been enjoying the past few weeks since we've been home from New York and praising God for the latest rounds of clear scans. The weather has been good enough for Kylie to play outside with her friends so we've been spending a lot of time outdoors which has been nice.
We had a wonderful Thanksgiving! I spent most of Monday through Thursday cooking, which anyone who knows me well knows that's my favorite thing to do. I'd seriously cook like it was Thanksgiving year round if I didn't have children. Obviously, it's worth the tradeoff though! We were blessed to spend the holiday with our friends, the Mesaros family, and her parents for a total of twelve. We invited our friends, the Briedes, but they had other plans. I wanted a full house! Obviously, we have SO much to be thankful for so it's a huge celebration for me in my heart.
It's been nice having Drew home for a few days without having to fly to New York or for some other medical reason. He's gone 12 hours a day during the work week and doesn't get to spend as much time at home as he'd (or we'd) like so it was even more of a blessing for our family.
Kylie's having minor surgery on Tuesday to place her third set of tubes and to remove her adnoids. Honestly, these types of surgery are nothing to us now compared to what she's experienced in the past so it barely phases us. But, anytime anyone goes under anesthesia, of course, there's always a slight concern. So please say a little prayer for her safety on Tuesday (and for my sanity as I try to deal with Christian in the waiting and recovery rooms while we're there).
Thank you for thinking of our family and for your continued prayers. We're thankful for all of you.
Have a blessed week.
love,
Raquel
Update: Tuesday, November 14, 2006 8:15 AM CST
I received a call last night from MSKCC that confirmed that the final report on Kylie's scans are ALL CLEAR!
Saturday, November 11, 2006 4:30 PM CST
I typed a very long message telling everyone about our trip and the scans, but it disappeared. So, I'll make this one much shorter.
First, the nurse practioner felt an enlarged lymphnode on the side of Kylie's neck which sent us all into a small panic and tested my faith. She said she wasn't overly worried since Kylie had been sick recently, but that it did seem larger than it should be for even being sick. We didn't expect to get any results from the scans until Monday. We were called into a conference room to meet with the primary oncologist, which was another scary moment because no one ever calls you into a conference room to talk. He immediately told us that both scans were clear! He felt her neck himself and said that the lymphnode must have went down some because it wasn't overly large anymore based on the description he was given by the other nurses and that he thinks that it feels like a normal virally enlarged lymphnode! Once again we must give all glory to God not only for Kylie's continued miracle, but for virtually shrinking Kylie's lymphnode overnight in answer to our prayers! God is SO good!
We took Kylie to Toys-R-Us on Friday as a reward for trading in all but 5 pieces of her Halloween candy. She rode the ferris wheel and was allowed to pick out a prize. Thankfully, she's still young enough to think an $8.00 toy is just as great as a $100.00 one! I hope that lasts a bit longer. Christian was a handful on the airplane. He's so active and wants to eat anything and everything he sees people eating. I think he'd shove a chicken leg in his mouth if we'd let him. He's still the sweetest boy around, of course.
We had a great dinner with Drew's aunt, uncle and cousin on Friday night which was a real treat for us all. Other than the scare I mentioned, we actually had a nice trip. The trips seem almost too short now that we don't have treatment (not that I'd trade that in for anything in the world of course!).
Thanks to all of you for your prayers and please know that they are working!!!
Have a blessed week.
love,
Raquel
Tuesday, November 7, 2006 9:36 AM CST
We leave for New York tomorrow morning. Kylie's scans are scheduled for Thursday and Friday. Thankfully, since they have changed her bone marrow tests to every six months, she'll get a break from the long needles going in her hips in four places during this visit. We'll update as soon as we hear anything at all.
Please pray for safe travel and clear scans and continue to BELIEVE in her total healing.
love,
Raquel
Thursday, November 2, 2006 2:38 PM CST
You got to love a mother's intuition. The last time I felt so strongly about something my worst thoughts were confirmed when Kylie was diagnosed. This time, it was with Kylie's hearing. I've been worried for the past week because Kylie hasn't been responding to me unless I say her name 10 times and yell it. Most people (including Drew) were convinced it was a three year old with selective hearing and tuning her parents out. I decided to play it safe and took her to the ENT this morning to check her ears and for another audiology test. After he checked her ears there was no reason to do the hearing test. He said her right ear was so severely infected that they could take a picture of it and use it on the wall charts and that her left ear was full of fluid. He said there's no way she's hearing much out of either one of those ears. He's decided to do a third set of tubes on her because this is her third ear infection since September 17th. He also wants to take out her adnoids. It's funny because I came out of there jumping for joy. Although I didn't feel in my heart it was true, a part of me was still worried about hearing loss from the chemo. I just knew something was wrong. I'm just glad it's treatable!
Kylie and Christian had a great Halloween. Kylie was Dora and Christian was the most adorable Boots (Dora's side-kick for those of you who don't know who he is) you've ever seen! Drew took them trick-or-treating while I stayed home and (ate brownies and) gave out candy.
I took Christian for his three month follow-up x-ray to check the status of his gallstone. The bad news is that it's still there, but the good news is that it hasn't grown at all! Now we can wait 6 months until the next x-ray. Just like with Kylie's scans before she was healed I found myself slightly disappointed that Christian's stone was still there. Faith is an amazing and powerful thing. I have prayed so much for his stone to disappear, I had no doubt that it was very possible that it may have been gone. So, when they called to tell me it was still there, I was actually a little surprised. I felt that way after Kylie's scans too. However, my disappointment never stopped me from continuing to ask Him to heal her and then believing it very well could be gone after the next scan...or the next...or the next. Of course, my prayers were answered in the most glorious way. I can wait for Christian's miracle just like I waited for Kylie's.
One week from today (Nov. 9th) Kylie will have her first day of scans. Please continue to pray for the clear scans that we KNOW she will always have.
Have a blessed week.
love,
Raquel
Wednesday, October 25, 2006 8:39 AM CDT
Our little Kylie has been a social butterfly lately. On Saturday she attended her very first birthday party for someone other than close friends. It was for a little girl in her preschool class and it was held at one of the local jumping places. She had such a good time and I could only think of the first time she attended a party at one of those places about 15 months or so ago and Drew had to help her climb up everything because she was still so weak. This time she was running around and climbing on everything - by herself! Except for the times that Mommy decided to slide down with her! Sunday Kylie had another first...Six Flags!! It was the first time she was able to attend the annual "Off Therapy" celebration. I can't explain to you the shining moment when Kylie was able to walk on stage and say she has been off therapy for 18 months! She proudly announced it into a microphone in front of 2,000 people. There were others there that had been off therapy anywhere from 2 months to 27 years! What a blessing!
Saturday night the family is attending a Halloween party in the neighborhood. Kylie gets to dress up in one of her two (she's a girl, what can I say) Halloween costumes. Her next big event came as a huge surprise to her. Drew was able to round up some tickets (thank you Kayle!) to Princesses on Ice this weekend! She is so excited to go and keeps asking me if the princesses will be real. I'm not sure if she's asking if they'll be puppets v. humans or if she means will they be real princesses. Either way, we can't wait to take her and see her face. Poor Christian's getting a lot of time with the babysitter, but he's such a happy baby that he doesn't care either way. Plus, we have been blessed with a wonderful sitter that takes such good care of him.
Unfortunately, Drew received some horrible news as we entered Six Flags on Sunday. One of his best friends from high school, Matt Green, was killed in an auto accident on Saturday. Thankfully, his two precious children were unharmed in the backseat. He and his wife, Monica, have been tremendous supporters of Kylie throughout her illness. We hope we can be the same for her and her children. We ask that you please pray for the Green family as they grieve the loss of a wonderful husband and father.
I'm going to spend a much needed day with Heather on Thursday. We haven't seen eachother in so long due to school, kids being sick, and of course, the trial last month. I'm looking forward to seeing her and catching up.
Our next round of scans is November 9th and 10th in New York. We're believing with all our hearts that they will be clear. God tells us that if we believe it, we shall receive it.
Have a blessed week.
love,
Raquel
Wednesday, October 18, 2006 4:38 AM CDT
I have not updated in so long I figure since I am still at work and it is 5:40 am there isn't a better time. Everything on the Barry front is great. Kylie is looking and feeling like a normal healthy child. I can't believe how far she come. To think we just had the D-Day anniversary and where she was 2 years ago, I can only say God is AWESOME!! Raquel and I have grown in our walk with Christ so much the past 2 years. Without our faith in the Lord I do not know how we would be dealing with all this cancer stuff. I will admit I am cautious when it comes to Kylie's disease because I read so many stories of relapse but in my heart I know God has completely healed my little girl.
We had a routine check up with Dr. Rapkin yesterday and everything went well. Kylie really enjoys seeing him and we love hearing him tell us how good she is looking and doing. Pretty uneventful except for the 2 hour wait.
Christian is amazing. What a blessing. He is such a good baby it is ridiculous. He has a routine down now and is growing like a weed. No news on the gall stone but he has a Xray coming up to check on it's status. Please pray everything is okay and that the stone will no longer be there. He seems to have no effects from the stone but he sure does poop a lot. The Barry kids and there bowels :)
Raquel is doing great. She is amazing and has so much strength. I don't know how she does it with the kids, house and of course me. I am so lucky she is my wife. I feel bad sometimes because of work, I am never home to help out. She is basically doing everything from 7am to 7pm. I wish I could be there more but it is not possible. I am hoping to really excel in this business so I can start working from home once in a while. That way she could get a little break now and then.
Kylie has her three month scans coming up in Novemeber. Another trip to NY. Every time we go there it is so depressing. When you see all the sick kids it certainly brings back the reality of what Kylie/we are dealing with. The good news that I know we will get clear scans and get to feel like a normal family for another 3 months.
Please pray that God's Miracle stays it's course and she has clear scans. Please pray for Catie who had brain surgery the other day. From all reports she is doing well but keep her in your thoughts. As always pray for all our other cancer friends.
We truly are BLESSED!!
Drew
Saturday, October 7, 2006 9:48 AM CDT
October 7, 2004
It seems like a bad dream. One of those dreams that you can remember parts of after you wake up, but not the entire thing. I remember the doctor coming in and turning off the TV, telling us that Kylie was in recovery after having her endoscopy to check for celiac disease. He said to us that her esophogus didn't look like what he would expect in celiac patients. He decided while she was under anesthesia that he would once again press on her abdomen while she was relaxed. It was the first time anyone felt it. A mass the size of a softball in her tiny 18 month old stomach. He said he thought it was something called Neuroblastoma and that an Oncologist would be coming to see us soon. The word "Oncologist" is what sent me over the edge. I was crying hysterically. Drew tried to comfort me saying that they don't even know what it is and that it could be nothing or benign. I asked him if he knew what an Oncologist's speciality was. He didn't. I told him cancer. He was quiet. The Oncologist came in and asked us a series of questions. He explained to us that they would do more tests, but that he believed it was indeed Neuroblastoma. We asked if it could be benign and he said no that Neuroblastoma is always malignant. They performed an ultrasound and confirmed the diagnosis. He said they would have to do a biopsy of the tumor and bone marrow tests to find out the stage and attributes of the cells.
Drew and I hugged and cried and there were moments where we couldn't let eachother go. It was the first time I've seen Drew cry with such intensity that at some points I momentarily forgot about the cancer and I hurt for him. Kylie would sit on my lap with tubes coming from everywhere and ask "Mommy, why are you crying?" After her treatment and major surgery she would only want to sit with me in a rocking chair. I would have to rock her so carefully so as not to pull the tubes out of her nose, chest and lungs. I slept with her in a large metal crib avoiding any contact with all of her lines.
We were told that the good news was that Kylie's tumor was stage three, localized in her abdomen. The bad news was that it all aspects of the pathology were unfavorable, which means the cancer cells grow rapidly. She was put in the High Risk/Unfavorable category. The number for survival of 5 years for this category is only 25%.
Although most of the hospitalizations for chemo, treatments, fever and radiation seem like a blur, the most vivid part I can remember is one night lying in the hospital bed with her and breaking down and begging God to heal her. It wasn't the first time I prayed for her healing and it certainly wasn't the last, but it was the most desperate "I have nothing left in me" prayer that I ever gave.
It was two years ago today that Kylie was diagnosed with cancer. Now Kylie is as healthy as can be and is living life to the fullest. I am so proud of her and how brave she's been through all of this. I am so very thankful to God for healing her and give every single bit of credit, praises and glory to Him. He led us faithfully on the right path of doctors, hospitals and treatments. We are truly blessed.
I pray that you and your families can feel every bit of the happiness that our family feels in our hearts today.
Have a wonderful, blessed weekend.
love,
Raquel
Monday, October 2, 2006 7:04 PM CDT
We had a good week, except for Christian being sick again. He started running a fever on Thursday and was almost 103 on Friday. Of course, the doctor found nothing wrong, but since he's had nasal issues for weeks now, he decided to put him on antibiotics - I assume in case it's a sinus infection. I've always heard that once you have school-aged children that your other little ones will always be sick. I'm obviously a little troubled with his frequent high fevers since Kylie's infancy was filled with them and the doctors couldn't find anything wrong with her. Can you believe she once had a 106 degree temperature?
Our friend Catie Wilkin's (ga/Catie)platelets dropped so she was unable to have brain surgery on Friday to remove the tumor. It has weighed heavy on my heart since I found out that she relapsed. The doctors have decided to take out extra tissue around the tumor and they can't be certain the effects it will have on her afterward. I believe they've rescheduled for the middle of October. Please keep her and her family in your prayers.
Kylie's still loving school and already has the teachers wrapped around her fingers. One even gives her a special mint every day when I pick her up. Sucker! LOL!
Have a blessed week!
love,
Raquel
Sunday, September 24, 2006 2:15 PM CDT
Thankfully, we were able to manage to keep the pink-eye contained to Kylie only and she went back to school on Wednesday. We had to miss our regular check up with the oncologist, however, because there's always a risk of getting other kids sick when their counts are so low. We've rescheduled for October 17th. They do urine tests to check for markers so it's always good to keep those appointments in between scans.
Christian's been congested and not sleeping well. I'm convinced I breed horrible sleepers, but as long as their healthy horrible sleepers, I'm okay with it. Drew and Christian are really starting to bond. Obviously, they've always had a connection, but now I'm starting to see a bond between a daddy and his son. It's very cute and I'm so happy to see it.
It looks like one of our special friends needs your prayers. Catie (www.caringbridge.org/ga/catie) has battled Medulloblastoma and it looks like she may have relapsed. I know Kylie has some very strong prayer warriors out there so please add little Catie to your list.
Thank you for your continued prayers for Kylie and all others in need.
Have a very blessed week.
love,
Raquel
Monday, September 18, 2006 8:52 AM CDT
First, let me start out by telling all those who've been living under a rock this past week that Heather's family's prayers have been answered and the courtroom portion of their ordeal is OVER. September 11th started jury selection in the murder trial of her former brother-in-law and on Friday he decided to plead guilty to both murders after new evidence against him came to light via a witness who decided to finally tell the truth. Heather's family had a bittersweet weekend of celebrating that they finally received justice, but yet still mourning their beloved Jennifer's death. Although I wish this was never happening to them, I'm so grateful that this psychopath is behind bars with two life sentences.
It turned out to be a great weekend all around. My sister and niece came in town on Thursday and we had an amazing time. It was the first time in two years that we've gotten together without it somehow being related to Kylie's sickness or treatment. I'm so thankful that we're now able to have these experiences and it makes us appreciate them all even more. Drew's mother and grandmother came in town as well and we celebrated his grandmother's 87th birthday on Sunday! She's an amazing woman and probably looks and feels better than most 60 year olds. One of my cousins was married Saturday night and I had the pleasure of seeing many of my relatives that I don't get to see often enough, including my own beautiful grandmother. What a treat for our family this weekend!
Sunday ended on a not so great note. When Drew picked up Kylie from "Wamba Land" at church on Sunday they told him that it looks like Kylie was developing pink eye. After her great-grandma's birthday party Drew took her to the urgent care center and not only does she indeed have pink eye (which has now spread to her other eye), but she also has an ear infection that we were totally unaware of. She's on medication and hopefully she can return to school on Wednesday.
I wanted to end with a praise report. I took Kylie to her weekly physical therapy session on Wednesday. Her therapist asked to see me afterward. She told me that she re-evaluated Kylie's skills and after adding up all of her scores, she feels she has no reason to see her any longer and is releasing her from physical therapy! She said that although she may be a few months behind the age range of certain skills, she certainly is considered on an "average" level and thinks she no longer needs therapy. Moments like these are unexplainably wonderful. Of course, Kylie was sad because she said she loves Ms. Carol and wants to continue seeing her. So, we decided that we'd just settle for running into her at Target or Starbucks instead.
Kylie's dancing around as I type this singing "Don't you wish your girlfriend was HOT like me...." Oh no.
Have a BLESSED week!
love,
Raquel
Tuesday, September 12, 2006 3:51 PM CDT
The Quiet Heroes luncheon was held this past weekend. It was a beautiful event honoring the mothers of children with cancer. Proceeds from the silent auction and the ticket sales benefit Curesearch. Chris Glavine (Tom Glavine's wife) was the one who originally came up with the idea to honor the mothers and has hosted it since it's inception two years ago. I must say, I was quite impressed that someone like Chris who doesn't have a child with cancer put so much hard work into helping others who do. Apparently the event raised over $100,000 last year! Alex Scott's mother accepted a $45,000 check from Macy's which was raised by Macy's holding their own "Alex's Lemonade Stand" in their stores. If you don't know, Alex Scott fought a courageous 7 year battle with Neuroblastoma and created "Alex's Lemonade Stand" which has raised millions of dollars for childhood cancer research. I was so touched that I plan for Kylie to have her very own Alex's Lemonade Stand so she can learn to help others. Hopefully, some of you can come have a glass!
I was able to see many moms that I've met over these past two years - some whose children are doing great and some who have lost their sweet children. We're a part of a sorority that we never wanted to be in. They're all amazing women and I'm so grateful to know each and every one of them.
I want to say a special thank you to my sister-in-law, Betsy Barry, and her sister, Jodi Andrade, for purchasing a table at the event. I know they made this donation because they are both extremely kind hearted, but I also know they did this for our family. We are truly honored for their generosity toward this special cause.
I've sent Heather some pics of Kylie's first day of school, but as you can imagine with jury selection in her sister's murder case going on and with trial starting (barring a change of venue) on September 25th, she definitely has much more important priorities. I feel like such a moron for not being able to put the pictures up myself. I swear, I've tried! Heather has put up so much artwork on the page that I just mess it up every time!
Have a blessed week and thanks for checking in. Please continue to pray for Kylie's good health and for all those in need.
love,
Raquel
Thursday, September 7, 2006 4:07 PM CDT
I am updating Kylie's site again today after reading of the passing of another one of our friends, Bailee Dunnigan from Florida(www.caringbridge.org/fl/bailee). We got to know Bailee and her mother, Robin, over the past almost 2 years and they, unfortunately, spent most of those 2 years in NY away from their family and friends. Bailee was finally able to return home to Florida a couple of months ago and was able to pass away surrounded by her friends and family. I am in complete shock as I write this because it came so unexpectedly. Please pray for her family as they deal with the loss of their precious little girl. My heart breaks...once again.
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Kylie absolutely loved her first day of school! I think the first words out of her mouth Wednesday morning when she woke up were "Is it time to go to school now?" As soon as we got there she walked straight into her classroom and never looked back. That's good because she would have seen Mommy in tears. It was hard letting her go. I'm sure many of you understand the feeling of someone else being responsible for your child. I know she's in good hands, but no one takes care of your baby like you do. It's especially hard with all she's been through. I just want to protect her from everything. Everyone at school kept telling me that she'd be fine. I knew that and they were right.
I came home and worked out and Christian woke up unusually early from his nap (i.e. no time for me to read or get caught up on a bible study while he was still sleeping). So, after running a few errands I found myself wandering to the school about 15 minutes before school ended. I wasn't quite a stalker, but I was pretty eager to see her smiling face. She ran up to me and gave me a huge, reassuring hug. She told me last night that she wants to go to school FOREVER! I'll make sure to remind her of that in a few years.
I've sent Heather a few pictures and asked her to upload them when she gets a chance. They didn't turn out as great as I'd like, but they're still great memories of how Mommy made it through...I mean...they're great memories of Kylie's first day of school.
love,
Raquel
Monday, September 4, 2006 9:14 AM CDT
Today I'm getting a little taste of what this week will be like with Kylie at school. Christian's sleeping and Drew took Kylie and our nephews, Tyler and Eli, to the Briede's lake house for a day of fun and sun so it's really quiet here. We spent Saturday night with Drew's brother's family and the boys came back with us to spend the night. Kylie loved every minute of it. Eli slept in her bed and we thought maybe Kylie would make it all night without coming in our bed. Wrong. Eli said to me this morning, "Aunt Raquel, Kylie keeps getting naked in front of us. Can you tell her to stop?" At 3, Kylie doesn't know to be "embarrased" by getting naked in front of two boys ages 5 and 8. It's almost funny how innocent it is.
Christian has some sort of ugly bumpy rash on most of his body. I took him to the pediatrican on Friday and he thought it looked like bug bites. After a few more days, it's apparent that it's NOT bug bites. I plan to take him to the dermatologist this week. We could probably retire on the money spent on co-pays for our children's doctor's visits.
Two more days until Kylie starts school. Drew's coming with me to take her on her first day and probably to help drag me out crying.
I promise to take lots of pics and hopefully we can get Christian in one too.
Have a blessed week.
love,
Raquel
Wednesday, August 30, 2006 8:39 AM CDT
Christian's finally feeling much better - just in time to be teething! He popped out tooth number one yesterday, almost two months later than Kylie got her first one. He seems crankier than normal and waking up several times at night so I'm assuming number two is on its way. This is another one of those tough parts of parenthood. You'd like to give them Tylenol or something to help the pain, but then you're not 100% sure he's even in pain and you don't want to medicate when it's not necessary. Oh well. If this is the toughest decision I have to make with him, then I'll take it!
Kylie continues to amaze me every day. Her intellect is incredible and surpasses mine at times. She says things that make your mouth fall open because you can't see a 3 year old saying them. I tell my friends that it's like having a 16 year old (or older) in a 3 year old body. My neighbor, "Mr. Dave", told her that she can hold a conversation as well as his 7 year old. I've always felt that God particularly made her like this because it's yet another way that she is different than other children her age which helps her to stand out for everyone to notice her to see the way He's worked such miracles in her life. Just ask her, she'll tell you. She says God made her special and that He healed her. I think I want to go hug her right now....
Life is good and we appreciate every day of it. Kylie starts school in one week. I'll take lots of pics and ask Heather to post some for me (Christian too!). Speaking of Heather, her sister's murder trial starts September 11th. Please pray for her family during this tough time and that justice be done here on earth.
Please continue to pray for Kylie's good health and for all the other children suffering from this horrible disease.
love,
Raquel
Friday, August 25, 2006 2:03 PM CDT
It's been Christian's turn to be sick again this week. He had a 104 degree temp on Wed. night. Honestly, I didn't even think to panic because there were times were Kylie had temps of 106 before she was diagnosed. I took him to the doctor yesterday and they said he just looked too sick so they did a urine test and blood tests. Thankfully, everything seemed to point toward a virus. Today seemed to confirm that because his temp is down to normal, but he now has diarrhea and congestion. Unfortunately, he's not eating or sleeping very well, but at least we know it seems to be nothing more serious. We're waiting on the bacterial tests to come back which takes at least 48 hours, but we suspect they'll be normal.
Kylie bounced back immediately after her port removal and went swimming the very next day with her friends. She's been playing non-stop and she can't wait for school to start soon.
Other than Christian being sick, everything's great around here. We're hoping for a very normal, uneventful weekend! Boring is GOOD nowadays!
Happy birthday Saturday to my not-so-little-anymore sister, Renata, and my niece, Kelly!
Have a blessed weekend.
love,
Raquel
Tuesday, August 22, 2006 10:27 AM CDT
Surgery went great! Better than I could have asked for! Kylie woke up with the usual "Mommy!" cries as they were wheeling her back to me in post-op, but after she got a hug and kiss from mommy and two popsicles later, she was back to normal and was out of there within 30 minutes of recovery time. We then went upstairs and said hello to our favorite people on the third floor (AFLAC Cancer Center) at Scottish Rite. They enjoyed seeing Kylie and I know that it means the world to them to see Kylie doing so well. When you go through this you become family with your nurses. They feel pain along with you and they also get to celebrate the joys. Today was one of those days. Getting Kylie's port removed is a milestone and a very happy day for us all.
Thank you to those of you who wished me a happy birthday. It was a great day! Every day is a great day now. Children make life so much more enjoyable. After dealing with Kylie's cancer, I thank God for just waking up each day to be with them. Birthdays used to be about a party and presents - now it's just a celebration of life and love. I swear, I'm the luckiest woman alive!
love,
Raquel
Saturday, August 19, 2006 10:14 AM CDT
We've had a great week enjoying the wonderful news of Kylie's clear scans and knowing we have another three months of normalcy until the next set of scans in November. Kylie will have surgery on Tuesday to remove her port. She's dreading the actual surgery and the thought of having needles in the future instead of a port access, but it's just another perfect reminder of her good health and how the port is no longer needed!
Things will be even more busy around here soon. Kylie's dance and gymnastics classes have started back up this week, along with her physical therapy sessions, which we hope to cut out soon because she's doing so well physically. She also begins another milestone soon - she starts her first day of school on September 6th! I am so torn! The thought of taking her to school makes my heart ache. How do I let go of her? I know it's what's best for her, but it's so hard. She's going to love it, I know. I will miss her tremendously though.
Have a wonderful and blessed weekend.
love,
Raquel
Monday, August 14, 2006 2:24 PM CDT
UPDATE:
We just got word within the last hour that all of Kylie's scans, including the MIBG, were CLEAR! We give all glory to God above! Thank you, thank you, thank you!!!
We're still waiting on the urine and bone marrow results, but we KNOW they will be clear as well!
love,
The Barrys
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Saturday, August 12, 2006
First, with the important news, CT scan from Thursday is CLEAR!! We haven't gotten the MIBG scan results back from Friday which is a big one, but we're BELIEVING it's clear too. That's the only bad thing about having our scans done away from home...we usually have to wait a few days before getting all of the results. It becomes an anxious few days, believe me. But, we keep our trust in God and know that He will protect Kylie. He has never failed us.
Travelling yesterday was a nightmare. Because of the security concerns, you ask? No! The security lines were short and everyone was very nice. It was airline delays and jam packed terminals with two cranky children. It's never a good day to fly after your child's been under anesthesia, but it was mainly Christian who had to suffer. He needed a nap desperately and we're sure he must be teething. He's so cranky lately which just isn't his personality. Our plane was two hours late leaving and we didn't get home til about 9:30 pm. I guess that's what I get for travelling with the jinxed traveller, Drew.
Everything else is great. Kylie's legs are sore, but not from the bone marrow extraction - it's from getting 4 shots of immunizations. They're red and knotted up. She hasn't complained about the bone marrow biopsy spots at all, which is great because sometimes it makes her have a hard time walking for a few days.
I'll update as soon as I find out on Monday (hopefully by then) on the MIBG results. Bone marrow and urine tests take about a week or more for results.
Have a wonderful weekend and thanks for checking in on Kylie.
love,
Raquel
Saturday, August 12, 2006 3:35 PM CDT
First, with the important news, CT scan from Thursday is CLEAR!! We haven't gotten the MIBG scan results back from Friday which is a big one, but we're BELIEVING it's clear too. That's the only bad thing about having our scans done away from home...we usually have to wait a few days before getting all of the results. It becomes an anxious few days, believe me. But, we keep our trust in God and know that He will protect Kylie. He has never failed us.
Travelling yesterday was a nightmare. Because of the security concerns, you ask? No! The security lines were short and everyone was very nice. It was airline delays and jam packed terminals with two cranky children. It's never a good day to fly after your child's been under anesthesia, but it was mainly Christian who had to suffer. He needed a nap desperately and we're sure he must be teething. He's so cranky lately which just isn't his personality. Our plane was two hours late leaving and we didn't get home til about 9:30 pm. I guess that's what I get for travelling with the jinxed traveller, Drew.
Everything else is great. Kylie's legs are sore, but not from the bone marrow extraction - it's from getting 4 shots of immunizations. They're red and knotted up. She hasn't complained about the bone marrow biopsy spots at all, which is great because sometimes it makes her have a hard time walking for a few days.
I'll update as soon as I find out on Monday (hopefully by then) on the MIBG results. Bone marrow and urine tests take about a week or more for results.
Have a wonderful weekend and thanks for checking in on Kylie.
love,
Raquel
Friday, August 11, 2006 8:16 AM CDT
Just wanted to update that we haven't heard anything regarding yesterday's CT scan. Kylie's getting her MIBG scan done right now and afterward we're meeting with the main doctor. We're hoping he'll have some results from yesterday for us. Sometimes they have partial results and sometimes they have all of them.
She's being wheeled in right now. Will update more later.
Raquel
Tuesday, August 8, 2006 2:06 PM CDT
We finally have a new computer! It came in the mail yesterday and not a minute too soon. You just don't realize how attached you get to modern technology until you are without it.
I thought I'd update you on the sugar tests the kids got today. The nurse who administered it said that the doctor has to officially look at the results, but he didn't see anything abnormal with the numbers. I was almost disappointed because we want them to find the reason why both Kylie and Christian (especially Kylie) have so many BM's every day. Of course, it does help us feel better that Christian's having them too, which means that it's not necessarily "c" related in Kylie, as the GI has been thinking all along. The doctor was not in today so I'm hoping to hear the offical results in the next few days and to find out what steps, if any, they plan to do next. I must say that both kids where champs this morning. I set my alarm to feed Christian a bottle at 5:50 am (he couldn't eat 4 hours before the 10 am test). He only took 5 oz. and a little of his solids. Then he didn't get to eat again until 12:45 pm! He was amazing. He didn't hardly cry at all, except for the annoying tube hanging in the inside of his nose so they could collect his breath for the tests. Kylie didn't complain either. I promised her a burrito afterward so we hit the local Mexian restaurant here in Alpharetta. Of course, now she's telling me her belly hurts. I can't win!!
In all the mix of doctors' appointments, test and scans, we sometimes forget that life for us also has its normal side. So, Christian has decided to remind us of this by starting to crawl in the last few days! It made me teary, of course, and it helped me to take a moment and remember to be grateful for these precious moments with my children and not let these moments get caught in the mix of the insanity we know as our life.
We leave tomorrow for New York and will return by the weekend. We would appreciate you taking a moment to pray for our safe travels and, of course, CLEAR SCANS! I promise to update with any scan results as soon as I hear them. We may get Thursday's results on Friday, but Friday's maybe not until Monday. Pray and BELIEVE!
love,
Raquel
Thursday, August 3, 2006 7:35 PM CDT
Please accept our deepest apologies for not updating until now. My computer crashed since the last update and it is, unfortunately, unrepairable. Drew meant to bring his computer home from work last weekend, but forgot because he was late for a meeting. We have one on order as of today (thanks to the Georgia tax free weekend!) and hopefully it will arrive soon and I can update regularly. I'm so sorry to keep you guys in the lurch about Christian.
We took Christian to the GI doctor last week and he concluded that the best choice for Christian right now is to monitor him via x-rays in the next three months. He said he doesn't want to do surgery on a six month old if he doesn't have to and wants to wait and see how he does. Everything still points to a random case of a gallstone. He said the gallstone is anywhere from 3-5 millimeters, but the tube it could pass through is only 2 millimeters. He also sent out some stool samples to find out if he's losing fats and vitamins that way, but the results were negative. His stool PH level is low and apparently that means that he's not breaking down his sugars properly. Christian is having a sucrose breath test performed on Tuesday to see how he's processing sugars. It seems like a horrible procedure because they are going to put a mask over his face for about 90 minutes or so. I'm sure it's going to be torture for a 7 month old. I took him to the pediatrician today for a weight re-check and he gained a little over 2 lbs in the past month and grew 1 1/2 inches! We were so happy to hear that he's doing so well and finally thriving.
Kylie's doing great. She had dental surgery on Wednesday. She "only" had to have four fillings and one crown. They had expected at least four crowns. She was miserable afterward and was nauseated from the mucus in her tummy. We leave for NY on Wednesday and will have scans on Thursday and Friday. Then on the 22nd she will once again have surgery - this time to have her port removed from her chest. Yeah! Tube free! No more ER visits for fevers!!! We could have had it removed yesterday during her dental surgery, but the docs in NY asked us to wait til after scans, just to make it easier for Kylie while in town for scans. After seeing her wake up from the anesthesia yesterday, I can't imagine doing it again in a few weeks.
Thank you once again for all your prayers for Christian and, of course, for Kylie. Please pray for clear scans for Kylie next week. And, BELIEVE!
love,
Raquel
Saturday, July 22, 2006 12:52 AM CDT
Nothing new to report on Christian. He's still not been eating very well and usually only taking 4 oz. of formula at a time, no matter if we feed him 6x a day or 4x a day. It's very weird. However, I did get him to take two 6 oz. bottles today and then he only would take 2 oz. on his next feeding. It's so hard for me to go through this with Christian because he has so many of the same symptoms that Kylie had. I know he doesn't have a tumor in his stomach or we would have seen it in the ultrasound, but it's still very scary to me. His appointment with the GI is set for Wednesday morning. We assume the other blood test will be back by then and we'll have a better idea of where we're heading after that appointment. Thank you for your prayers.
Kylie still amazes us every day. I was watching her at gymnastics yesterday and happened to be reading a People magazine article on the yearly prom held at Memorial Sloan Kettering Cancer Center. Kylie took part in the prom last year and was even crowned "prom queen" for her age group. The article was about this year's prom and I saw several faces of both mothers and children that I recognized. I read the article and then looked at my baby through the glass window doing her gymanstics and at that moment I was struck hard with the reality of how far we've come since last year. During last year's prom, Kylie was pale, skinny and bald and being fed intraveniously through her broviac tubes in her chest. She was so weak she would shuffle her feet down the halls of the hospital. Now my little girl is strong and healthy with a head full of hair and doing gymnastics. I'm sure the other mom's thought I was nuts as I was shedding tears at the window. It was a wonderful moment for me and I give all glory to God for where we are right now.
A few nights ago Drew and Kylie were playing in her room. She put her prom crown on and asked Drew how she looked. He said "beautiful!" He put a heart-shaped pillow from her bed on his head and asked her how he looked. She said "distinguished!" Distinguished?! Are you kidding me? My three year old said "distinguished" and even used it correctly. Wow. She amazes me! I need to start a "Kylie-ism's" journal.
Today is our anniversary and we're actually going out tonight. We're so thankful that Kylie loves her babysitter and looks forward to her coming over.
Have a wonderful, blessed weekend!
love,
Raquel
p.s. Thank you to Will Olsen's family for adopting Curtis, the black lab I told you about. They're picking him today. He couldn't be going to a better family!
Wednesday, July 19, 2006 4:10 PM CDT
I spent half the day Tuesday in tears worried about Christian. He started looking yellow to all of us and started having diarrhea and was having bouts of screaming that I couldn't control. I called our pediatrician who told us we could go ahead to the ER here in Atlanta on Wednesday morning and he'd have tests ordered so we could get the tests results back as soon as possible. So, within thirty minutes or so Heather and I packed up the car and began heading back to Atlanta. We went to the hospital first thing this morning where they performed an x-ray of Christian's belly and blood tests. I had to leave the room for the IV insertion. I couldn't see another one of my babies getting stuck over and over again. It was a long 20 minutes to say the least.
The doctor said that the stone does show up on the x-ray, but thank God that it's still not causing a blockage. I was told by my pediatrician that his GI associate said that if it does show up that medicine probably will not dissolve the stone and that he'd probably have to have his gallbladder removed. But, the ER doc said the GI doc he spoke with didn't mention that. Thankfully, the bloodtests showed that Christian is not jaundice and that he must have been eating too many sweet potatoes! However, the test for the blood disorder (showing whether his cells are oval instead of round) will not be back for a few days. We are awaiting those results and will be seeing our GI doctor next week to follow up.
The importance in all of this at this point is that there's no blockage. We're now playing the waiting game to find out the rest. He's still not eating well and we're not sure why. We're hope it's just leftover virus from his fever last week.
Aside from the worries, we had a fun few days in Florida. Christian was happy most of the time and slept better than he does at home. Kylie had a great time at the beach and the pool and had so much fun playing with her friends. It was a good time for all of us and it kept my mind off of things for at least some of the time. Christina and Heather did a good job of that. Heather and I left Destin at 3:30 pm and didn't get home til about 1:30 am. In case you're adding your fingers up, yes that was 10 hours for a 5 1/2 hour trip. It was one nightmare trip that included wrong directions on a GPS system and the worst part, a blow out on the interstate in Alabama. Thank God for the Alabama State Troopers whose two cars blocked in our car full of four hungry kids and two crying moms and changed the tire for us. The whole trip was something out of a movie. It was one thing after the other, but as usual, we made the best of it and found a way to laugh about it today. We're just so very thankful to be home safely.
Thank you for your continued prayers for our family. As always, we are SO blessed!!
love,
Raquel
Monday, July 17, 2006 2:29 PM CDT
Good news. I called my OB this morning and I was tested during pregnancy for CF with a negative result, therefore, there is zero chance Christian could have CF. My pediatrician called me himself this morning to tell me that he spoke with a GI specialist about Christian. They are now going to do a blood test to see if Christian has a blood disorder that would cause his blood cells to be oval instead of round. The disorder affects the spleen and then could cause gallstones as well. IF this is the case, he would need to have his spleen removed. He also said they will do an x-ray of his belly and (assuming he does not have the blood disorder) if the gallstone is not visible, they could treat it with medication to see if it disappears. If it does show up, then it cannot be treated with medication and I assume that means they'd remove his gallbladder.
Of course, we're going through mixed emotions. We're so thankful he is negative for CF. So VERY THANKFUL! But now we're faced with blood tests and x-rays to find out where we go from here. My pediatrican asked if we have any family history of spleen removals. From what I understand, this blood disorder is genetic and neither Drew or I know of anyone who's had their's removed. So, we're hoping that's a good sign.
I'm waiting to hear back from the pediatrician to find out the schedule for the blood tests and x-rays. Please pray that this is very minor and there is no surgery involved. God's been so good to us so far and we have no reason to believe otherwise. Thank you for your prayers.
Oh, and Kylie's doing great... : )
love,
Raquel
Sunday, July 16, 2006 10:52 AM CDT
It's been a difficult 24 hours. I must say, I was totally prepared for the doctor to tell us that Christian's ultrasound was 100% normal and we leave and have a wonderful vacation in Florida. Let me start by saying Christian DOES NOT have a tumor. However, he does have a gallstone. Can you believe that? A 6 month old with a gallstone. Well, it explains why he's not eating lately, why he's been throwing up for so long and why he wasn't gaining weight. My heart sank when the doctor came in to recheck Christian with the ultrasound machine. I knew something was wrong. We immediately called Kylie's GI doctor's office and, thankfully, the doctor on call was one that was familiar with our family. He was very kind in taking his time to explain things to us. He said it's possible they may monitor it and see if it goes away, which can happen in young kids. However, if he's symptomatic, they will probably do surgery. We feel this will probably be the option. The doctor who saw the ultrasound at the hospital said that it looks like the gallstone is mobile, which is good because it doesn't look like it's obstructing the bile ducts. However, he is definitely showing symptoms that it's causing problems by being in there. It kills me inside knowing he's been in pain.
The part that makes this all worse is that because he's so young, there's no dietary reasons for him to have a gallstone. So, it's either just a fluke (which definitely happens) or it can be caused by something else, such as Cystic Fybrosis, a blood disorder or a few other things. Of course, this is our biggest fear. He shows some symptoms of CF, but those same symptoms are also symptoms of having a gallstone. So, only tests will tell.
I'm going to call several doctors tomorrow, including my OB to find out if CF was a standard genetics test when I was pregnant. Second, I'm calling our pediatrician and the GI doctor who sees Kylie to see about getting further tests done to see if he needs to have the stone removed surgically. With his weight loss (failure to thrive), we're guessing this will be option, but who knows. I just don't want him to be in pain.
Please pray that Christian is spared from pain and that he's able to eat. He's been running a fever lately and now he's projectile vomiting so we're hoping it's not related to the gallstone, but maybe a virus, which may be why he's not eating as well either.
We'll keep you posted. Thank you for your prayers.
love,
Raquel
Friday, July 14, 2006 1:14 PM CDT
Kylie apparently loves to give Mommy and Daddy high blood pressure. Two nights ago she started complaining of leg pain (you may remember that she's done this before, conveniently before bedtime). The scary thing was that she woke up 4 times crying after going to bed. Drew couldn't understand her very well, but thought she was saying "owwwwe, my leg". Then, to make it worse, she was very adamant about it being the same leg and area each time, whereas in the past it seems to "move around". So, we got no sleep and called the docs the next day. The NY docs referred us to our local office. Thankfully, Nurse Stephanie was so patient with me and explained that true bone pain is constant and Kylie would most likely be limping and favoring that leg if there was some sort of disease present. She even called later in the day to check in on her. After waking up that morning, she never complained about it again, thank God. I was ready to board a plane to NY! I do believe something was bothering her since she was so constant with the complaint, but I think it must have been a growing pain. We certainly are happy with growing pains!!
I took Kylie to her pediatrican this morning for her ear recheck and the infection is officially gone. So, we're ready for our trip to Florida. Of course, Christian now has a slight temperature as of today. Figures. He's starting to cut his bottom tooth and depending on who you ask, that can cause a low grade fever in some babies. I'm hoping that's it and nothing else. Kylie's really looking forward to this trip and to playing with her friends. I'm looking forward to playing with my friends too!
Lastly, anyone want a dog? : ) Drew spotted a large black lab running around the neighborhood a this past weekend and took him in. We've played doggie day care here and at the Briede's house, but neither of us can keep him. He's absolutely stunning with gorgeous shiney black fur. He probably weighs a good 80-100 lbs and his head's the size of a basketball. He's very sweet and smart too. He just needs some TLC and a yard. The kids love him and he seems to get along great with my two mutts as well, so we know he's dog friendly too. We tracked down the previous owner and he can't keep him. He's in a small apartment with three other dogs. E-mail my friend cathybriede@aol.com if you're interested and she has a pic she can e-mail you. We'd love to find him a good home.
Have a great weekend!
love,
Raquel
Monday, July 10, 2006 1:33 PM CDT
We've had a great week. Kylie's been healthy and she's almost finished with her antibiotic for her ear infection. Christian is just Christian. He's the most amazing baby ever and I can't say enough about him. In fact, at his six month visit, the doctor said he's not getting enough calories and has dropped significantly in weight. You'd never know it by the happy smile he carries around all the time. It's SO beautiful! So, much to my dismay, we're switching to formula and monitoring his growth. He's had some tummy issues himself lately and his doctor has recommended for all of our minds to be at ease that Christian have an abdominal ultrasound to rule out any problems such as Neuroblastoma. I've read that it's rarely genetic and we honestly have no doubts that it will be fine. However, we all agree that it's better to be safe. His ultrasound is scheduled for this Saturday. Please pray for absolutely normal results.
Kylie has a check up tomorrow at the oncologist's office here in Atlanta. It's a monthly height/weight check and they usually draw labs and take urine tests to make sure the markers are all down in between scans. Please pray for absolutely normal results for Kylie as well.
We leave Saturday after Christian's ultrasound for Florida. I can't wait! Kylie's so excited to play in the sand. We'll be back on Thursday. Drew's trying to fit in every hole of golf he can while we're gone. No guilt when the wife and kids are out of town, right?
My baby boy is crying in his crib. An early awakening from his afternoon nap....
Have a great week!
love,
Raquel
Tuesday, July 4, 2006 8:32 PM CDT
Monday morning (Sunday night) Kylie was up all night crying. She told us her ear was hurting. We've been through so many ear infections, but none since the tubes were placed in her ears at about 15 months old. (She's on her second set). The next morning she acted like nothing was wrong, but I followed my gut and took her in. Her pediatrician said her ear was swollen and full of puss and that it was so swollen that she stopped having pain. So, now she's on antibiotics. Having gone through the past 21 months an ear infection is like having a splinter. In fact, it's one of those splinters that's hanging out of the skin and comes out really easy with tweezers.
I'm listening to the pop of fireworks as I write this. We spent the evening doing something we haven't done in so long - we had a wonderful day and night with our neighbors who happen to be our great friends. We had a parade in the neighborhood with a firetruck and the local firemen, Drew and Kylie hung out at the pool with her friends while I cooked, and we had a cookout with two sets of neighbors who we adore. In fact, Drew, Dave Briede and George Mesaros are with the kids right now (all 9 of them - not Christian of course) at the fireworks display here in the Alpharetta square. I know that seems like nothing, but this is something we used to do all the time. After Kylie was diagnosed our lives were filled with chemo treatments, clinic visits, isolation from friends because of Kylie's counts and then LENGTHY trips to New York for surgery, radiation and antibody treatments. Although our friends have always been there for us the timing was never right for us to be together like we used to. Tonight was the first time that we actually had a normal get-together with them where everything just seemed "right". I can't explain it, but things were just as they should be. Life is great again. Life is normal. I'm so thankful to God that this is all possible.
I hope you all had a wonderful 4th. Totally off the subject, but today I got to thinking is this the only holiday that we call by the actual date? I've never heard of "Happy December 25th!" or "Happy February 14th!". Just something to think about... (LOL)
love,
Raquel
Tuesday, June 27, 2006 6:12 PM CDT
Kylie's ENT appointment went well. Dr. Roth said her tube looks like it is beginning to dislodge, but it's not quite ready for him to remove it. Hopefully, it will fall out by itself sometime soon. They also performed another hearing test. Once again, tests show that she is hearing in the normal range. Praise God! It just amazes me that she's had no hearing loss detected after all of the chemotherapy rounds and the stem cell transplant. We know so many kids who haven't been so fortunate. He wants to see her again in 6 more months and I assume they will continue to test for any loss that could show up in the future. It won't.
Kylie's continuing to love dance and gymnastics. She can't pick a favorite. I'm thinking of signing her up for the year-round dance class which starts in the fall and it ends with a recital, which of course is the whole reason I want her to take that one! I have dreamed of the day I would see her dressed up in a costume and dancing on stage. I can't wait!!
We heard from the schedulers in NY and they have moved Kylie's scans to August 10th and 11th because the dates in July weren't available. If Kylie was still receiving treatment we would be leaving tomorrow already. Seems so hard to believe. I'll actually miss being in NY, but being there for a few days at a time will be just enough I think.
Please continue to pray for Kylie's perfect health and for all the other children with cancer and life threatening illnesses.
love,
Raquel
Tuesday, June 20, 2006 8:33 AM CDT
First, a big thank you to Heather for adding the new pics! I haven't talked to her in a few days and was checking the webpage when I saw them. I was surprised myself! She must have her new program up and running. I know with summer here and all four kids at home, she's crazy busy but, as usual, she finds time for others. Thanks Heather!
As you can see, both kids have changed a lot! Kylie's hair is much longer than the last picture that had been up. If I pull it straight (it's SO curly), it's definitely shoulder length. We get stopped on a daily basis with people complementing her on her curly locks. It's simply beautiful. I think it's hit or miss on the hair situation after chemo.
Drew had a nice Father's Day. I wish I could say we made it extra special for him, but he wouldn't allow it. I tried to repay him from Mother's Day with breakfast in bed, but he said no. I tried to get him to stay inside out of the hot sun, but he insisted on doing yardwork. We went to church in the morning and he was so excited when Kylie came out of her class with matching homemade bracelets she made for her and him. I'm telling you, if Kylie plays her cards right, she will be able to sweet talk her way into anything with him when she's older. He adores her. I know he can't wait til Christian's old enough so he can start spoiling him too. We went out to dinner and then for ice cream afterward. Drew decided he wanted his Father's Day gift to be a day of 36 holes of golf at Reynold's Plantation. I don't know if the true gift is the cost or the kitchen pass from me.
We have an appointment with the ENT on Thursday morning. Kylie's been complaining of her right ear hurting her. We're 99% sure it's probably the ear tube loosening up and sticking in her eardrum. Ouch. It's happened before with her last set of tubes. It hurts her to yawn and such. I figured we'd bypass the pediatrician and go straight to the ENT in case it's ready to be removed.
We're still soaking in the news of Kylie's treatment in NY being over. It's been almost impossible to make plans for much when we spend 3 weeks or so in NY every couple months. The kids and me are planning on taking a short beach trip with a good friend of mine (Christina) and her little girl (Charlee), who Kylie adores. Heather and her two kids (Sylvia and Max) are supposed to come along as well. We hesitate calling it a "girls" trip so as not to hurt Christian and Max's feelings. Maybe one day soon Drew and I and the kids can take a real vacation, now that he's not having to take so much time off of work for Kylie's treatment.
I saw in the paper this morning that a special docmentary on childhood cancer called "A Lion in the House" is coming on GPB and WPBA Wednesday and Thursday at 9 pm. I can honestly say that I won't be watching as it will hit too close to home. But for any of you who want to learn more, please watch. I hear it's good. It covers children over several years time, which catches the happy endings - and the not so happy endings. Sad, but unfortunately the way it is.
I hope you all have a wonderful, blessed week. Thank you for your continued prayers for Kylie and our family. You don't know it, but we pray for you all as well.
love,
Raquel
Wednesday, June 14, 2006 10:46 AM CDT
We received a very important phone call yesterday. Our favorite Nurse Practioner (Linda) from Memorial Sloan Kettering in New York called to let us know the good news - Kylie is HAMA positive! I screamed out loud after she told me. I was so nervous that I didn't know what to do with myself. I was shaking and my heart fluttered. Yes, treatment is OVER! Most importantly, no more painful rounds of treatment for Kylie every few months. No more long trips to NY away from our family and friends. We can finally be a normal family again. We will still need to fly to NY every 3 months for scans, at least for a few years until they give us the go ahead to get her scans done here. The nervousness comes from the very same fact that treatment is OVER. Now Kylie's health is completely and 100% in God's hands. Of course, we know it always was, but it's so strange to know that after 20 months of chemo, surgeries, a stem cell transplant, radiation, antibodies, blood and platelet transfusions, etc., that we will be living as much as a normal life as possible. Wow, it's strange even saying it. We want to send up many praises to God for Kylie developing the HAMA. I prayed over and over for her to not have one more treatment than necessary, but that she'd get enough that her body needed. I don't know why or how, but I knew that the last round was it.
I had a hard time dealing with the news last night while still mourning the loss of Jacob Duckworth. It was difficult to be so happy for Kylie while knowing that another mother is suffering. I'm sure Jacob's mother is happy for us as well, but it brings up more of the "why's?" in this world. We'll never know, at least not in this lifetime.
It looks like we'll head back to NY at the end of July for her next work up (scans). We ask that you continue to pray for Kylie's good health and pray that her body uses those antibodies to kill off any remaining cells in her body (although we know that God has already done so).
Please continue to pray for Jacob's family and for all those in need.
love,
Raquel
Saturday, June 10, 2006 1:04 PM CDT
Monday, June 12 Update:
It breaks my heart to inform you all that our friend Jacob Duckworth passed away last night. He was only 6 years old. Please say a prayer for his family who are, undoubtedly, suffering tremendously with their loss. (www.caringbridge.org/fl/jacob)
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There's never a dull moment in our world. Kylie started having a runny nose and deep cough yesterday and then was up most of the night moaning and had a fever. She woke up with no fever (at least per my old digital thermometer), but still coughing pretty bad. I decided to take her in to the local urgent care center. Her fever was 101 when we got there. Because of her "situation" they took chest x-rays and sinus x-rays. The doctor told me if it were a "normal" child she would have just sent her home for observation. The doctor then called the on-call oncologist at Scottish Rite who said that because of Kylie's port we needed to go ahead and go to Scottish Rite Children's Hospital for a blood culture of her line (they can't access her port at the urgent care centers) and give her a dose of IV antibiotics. My guess is that if she's still running a fever tomorrow we'll have to repeat the process at least for 3 days or so which is the maximum amount of time it takes for a culture to come back positive. Please pray these tests come back negative (they will!), her fever goes away and that she gets over this illness quickly. When Kylie finishes up her treatment in NY, we will promptly have the port removed so we no longer have to deal with this every time she has a fever. Of course, then we'll have to deal with the trauma of an IV needle or syringe every time she goes in for blood or sedation.
We want to ask you all to join with our family and pray for 6 year old Jacob Duckworth (www.caringbridge.org/fl/jacob) who's been battling setbacks in the PICU for a while. Apparently, the doctors have decided there's not much more they can do for him, but we know from experience that God can work wonderful miracles (which He's already performed for Jacob in the past!). We've gotten to know Jacob's family through our trips to NY and both of our children were in the PICU together after their tumor removals. Please keep both Jacob and his family in your prayers.
Have a blessed weekend.
love,
Raquel
Wednesday, June 7, 2006 1:03 PM CDT
Kylie's visit to the dentist went better than expected. You wouldn't think I'd be saying that when the dentist told me he saw 8 spots. He told me that her mouth looked excellent for a child who has had chemo. He said that the average number of spots he sees starts at about 15 and goes up. Kylie having only 8 was great. He also made me feel better about it being only from chemo and nothing we've done. He said it will probably be around September before they can get her in to fix them.
She also had her first dance class later that day. She made me cry. I saw her in her leotard running over the other girls and I just couldn't believe how grown up she looked. The gymnastics class she took in the spring was a 2 and under class and she was the oldest in the group. Her dance class (and her gymnastics class which starts next week) is 3-4 year olds so she's in a much older class. She had a great time. I felt bad when they informed me that they'd be changing into their tap shoes at the halfway mark. I had no idea. Poor thing was about one of three without them out of a class of about 10. She ran out afterward saying "mommy, I need tap shoes!".
Someone sent me some instructions on how to add pics to the site (thank you Tonya!). I'm hoping to get some new ones added soon.
Christian's crying. He must be stuck on his tummy again. Have a blessed day!
love,
Raquel
Sunday, June 4, 2006 2:16 PM CDT
The weather in Atlanta was unusually beautiful this weekend. We've had 90+ degree weather the past few weeks and it was in the low 80's and breezy all weekend. We went to the annual "Concert on the Lawn" at North Point Community Church on Friday night with our friends and small group members. They play all secular music and it was awesome. The NPCC singers could all win American Idol. They're amazing. We spent Saturday doing more landscape planning (it's been going on for a year with nothing accomplished so far) and then we hit the park in the afternoon with the kids. Drew and Kylie are at the lake today with the Briede family and I have the pleasure of spending the afternoon with the most handsome boy on the planet.
Kylie has yet another dentist appointment tomorrow afternoon, this time at Scottish Rite. The "regular" dentists refused to do the work on Kylie because of her cancer history and the fact that she has a port in her chest. They referred us to the docs the hospital, which is just fine with us. Unfortunately, she has to have the whole exam over again and then they will schedule her for her appointment to have the fillings and crowns done under sedation.
Later in the day tomorrow, Kylie has her first dance class! I'm so excited! I went out today and bought her a pair of ballet slippers and another dance leotard. Oh my goodness, am I turning into a "stage mom"?
I want to take a minute to wish Britni Doyle good luck for tomorrow as she takes part in the Miss Teen Georgia Jr. pageant. Britni is a high school freshman who is not only beautiful, but exceptionally smart. She created the "Teens for Cancer Free Kids" organization to raise money and awareness for childhood cancer. Kylie and I had planned to attend the pageant until I realized it fell on the same date as our prior commitments. Good luck Britni! We're very proud of you!!! Wish we could be there!
Lastly, I apologize for not posting any new pictures in a while. Heather (my computer guru) lost her picture software when her computer crashed and has been unable to reregister the software. I have to try to figure it out on my own, although she kindly assures me that it's not possible. LOL. I'll see what I can do.
Have a wonderful and blessed week.
love,
Raquel
Wednesday, May 31, 2006 11:47 AM CDT
I've been waiting for the past week to post because I've been hoping to get Kylie's HAMA results from Sloan Kettering. I finally heard back from our favorite Nurse Practitioner (Linda) this morning who told me that Kylie's levels are borderline. They are sending me another HAMA kit to have her retested here on June 8th and I will overnight the blood to New York. Hopefully, we'll get a result by the end of next week. She said either the HAMA level will have increased by then or it will decrease to a negative level. If so, then we will go for round 8 in July and that she will most likely be HAMA positive at that time. So, it looks like that at the very least she'll be done with the antibody treatment sometime in July (if not now). We're excited either way and trusting God to determine the exact amount of rounds her body needs.
Kylie's loving all of her friends being out of school. She's already been to the Briede's lake house once, the pool in our neighborhood at least twice, and playing with her friends outside in the 90+ degree Georgia weather (thank God for sunscreen!). She actually has her first tan. She even wore a bikini to the pool and proudly showed her scar across her tummy and back. She was on Accutane last summer and fall and she couldn't get anywhere near the sun, even with sunscreen. This should be a fun summer!
love,
Raquel
Monday, May 22, 2006 12:15 AM CDT
Alas, we're home. What a short trip. We absolutely loved Hilton Head, but we just didn't have enough time away and, moreso, together. Of course, it WAS for work, so Drew had to work 1/2 days on Friday and Saturday, then we had dinners planned on both Friday and Saturday nights. Coupling that with Christian's naps, I'd say we probably spent no more than four hours total at the pool or beach the entire weekend. The absolute must for next time we get away is separate bedrooms. I didn't realize how hard it would be to try to get Kylie to go to sleep at night while we were still up and to get Kylie to try to be somewhat quiet while Christian napped. We would have upgraded to a suite or had adjoining rooms, but it was double the price per night. Now that we know the outcome, I'd say it's well worth it to pay extra.
Kylie absolutely loved the beach. She would go out into the water and let the waves crash on her and knock her down while we held on to her hands. She'd laugh at each one like it was the first. We built sand castles on the beach and she decided that she wanted to sit on them afterward. Apparently kids don't mind having sand in their bathing suits. There were HUGE jelly fish lying on the beach. I've never seen them so big before. She was scared of them and would make sure she circled around them about 10 feet so as not to get too close.
Otherwise, we had a great time. We'd love to go back and spend more time, work free. It's only a 4 1/2 hour drive for us and a very nice family environment. My sweet hubby even held strong and didn't play golf while he was there. That's saying a lot considering there must be 50 golf courses in a few miles radius.
Christian had his 4 month check-up today, a few weeks late. He's in the 75% for height, 25% for weight and 50% for head. The doctor says that he's growing perfectly on the growth chart (even though his weight is only 25%) and that he's going to defintely be long and lean like Daddy. He received 4 shots today, but Kylie held his hand while Mommy hid her face on the other side of the room.
Kylie goes to see her local oncologist tomorrow where they will take her blood sample which will be sent to NY for the HAMA test. I'm hoping we'll hear something within the next week. If anything, so we can make our future travel arrangements for treatment and/or scans.
Have a blessed week!
love,
Raquel
Tuesday, May 16, 2006 8:04 AM CDT
I had a wonderful Mother's Day. I was told to stay in bed and was treated to a yummy breakfast in bed by Kylie and Drew. We went to church afterward and spent the afternoon relaxing. Drew took me and the kids to dinner and I was able to indulge in some cheesecake. Kylie and Christian gave me a sweet Mother's Day charm bracelet and I'm told another hand-made gift is on it's way. Kylie also made me a card complete with her scribbles on it that will be saved forever. The kids got into bed late that night, but it was all worth it. Kylie came up to me on Sunday and said "I love you Mommy. You're the best mommy in the whole world. Happy Mother's Day!" Can you just feel my heart melting? I think it skipped a couple beats. I asked Christian if he'd be my boyfriend, since I don't have one right now, and he responded with a huge smile. I guess that's a yes and Drew doesn't seem to mind me having a 4 month old boyfriend. It's a win/win situation.
Kylie had a doctor's appointment with our GI hero yesterday about her diarrhea. I call him that because he's the one who found her tumor when no one else would listen. Anyway...as usual, the appointment was uneventful because no one can figure out why she has it. She's been better though and has only had one in the past 10 days. We're hoping it was just a very long virus which the GI doctor says can happen sometimes in children.
We are actually going out of town on Thursday and it's not related to treatment! We're driving up to Hilton Head as part of a corporate meeting Drew is attending and the family is invited. I'm looking forward to it, although it should be interesting having Christian there. Of course, Drew will be gone in meetings for 1/2 the day, then Christian will have to nap, and then they'll both be down by 7:30 pm..... But, at least we'll be somewhere else!
Have a great and blessed week!
love,
Raquel
Friday, May 12, 2006 12:56 AM CDT
Since I plan to be very busy this weekend soaking in every single bit of "Mommy" time this weekend with the kids and Drew for Mother's Day weekend, I thought I'd write a quick posting.
There are a few holidays each year that make you really sit back and give thought to how wonderful being a parent is and Mother's Day is one of them. If you really stop to think about it, how miraculous is it that we are able to produce these wonderful creatures? Anyone who doesn't believe in God must not have children.
I hope all of you understand that even though Kylie developed cancer, I still feel like the most blessed mother in the world. God gave me the greatest gift when He trusted me to take care of her. I am truly honored to be her mother. I guess I must be doing an okay job because He then blessed me with Christian too! The two of them are amazing and they make life more enjoyable than I could have ever imagined or hoped for.
I wish all of you mothers a very happy Mother's Day.
love,
Raquel
a/k/a Kylie and Christian's Mommy
Tuesday, May 9, 2006 12:13 AM CDT
It's so good to be home!! We arrived back in Atlanta Saturday afternoon and it seems like we've been going non-stop ever since trying to get organized at home. I still have a million things to do, or so it seems, but just being here makes it all wonderful.
Kylie ended up having no pain again on Friday. They believe there's a very good chance that she has developed a HAMA, but won't be sure until they check her bloodwork, which won't be collected and then overnighted to NY until May 23. They said that it's also possible that although she's obviously building up HAMA in her blood that it may not be a high enough number to be considered officially HAMA positive. If that's the case, we will go back up for Round 9 in July and they say that she will almost definitely HAMA then. After going back and looking at the guest page, I thought I'd add a link that may help you understand about antibodies and HAMA from the Sloan Kettering website. http://www.mskcc.org/mskcc/html/3215.cfm
I've been both excited at the possibility of her being finished with treatment and also terrified at her being done with treatment. There are such mixed emotions that only a cancer-parent can understand. This would be the absolute last thing put into her body (barring any other protocols or vaccines that are ever developed in the future) that would either treat or protect her body from cancer. I didn't realize until last week that once you reach HAMA that over time it will decrease until you are actually HAMA negative. However, you are not eligible under the current protocol to begin treatment again, unless a new protocol is developed. I guess the hopes are that the HAMA you develop will fight off any remaining cells left in your body after chemo and radiation. Yes, it's all confusing. We've been going through this for so long and we still get confused. The only thing I really listen to when they talk is that those that receive the antibody treatment do better than those who do not. That's enough for me.
Of course, regardless of what they or anyone else says, our faith is what keeps us going in knowing that Kylie is healed. We felt that God led us to NY and to receive the treatment so maybe this is the final editing to His master plan of her full healing. We don't know the route He takes, but we must trust in Him in the destination.
Friday, after possibly her final treatment, we took her to a nail salon in New York to have her very first manicure/pedicure as a special reward. She, of course, picked out pink (two different colors) and sat there and enjoyed every minute of it. It was so adorable. Of course, like any other proud parents, we snapped 50 pictures of the event! She's gone around telling everyone "I got my first mani/pedi!" Our little baby is now a little girl.
Have a wonderful and blessed day.
love,
Raquel
Wednesday, May 3, 2006 10:34 PM CDT
Just a quick note to let you know that Kylie's fever hasn't returned. The rash is still lightly covering the bottom half of her body. They took a blood test yesterday for 5th's Disease, but the results aren't' back yet. Unfortunately, she developed (yet again...) massive diarrhea yesterday and was up all night with it and had it through bedtime tonight. It's hard to see how she can have so many BM's with so little food going into her tummy. The doctors are still perplexed and keep giving us non-commital answers to why she has it. This time it seems to be different than last week in frequency (now it's more frequent) and consistency (now it's worse) so we're hoping it's just part of a virus. There's only so many guesses you can make for the cause of diarrhea and we're just hoping for a final answer.
I was hesitant to post this, but figured you all are close to family by now. There's the chance that Kylie may have actually reached HAMA. She had very little pain on Tuesday and ZERO pain today. In fact, she actually slept through the entire procedure! They will not test her, however, until her normal test which is done via mail weeks after the end of her treatment. We're hoping she has HAMA'd, but still pray that God has the final decision as HE is the only one who knows best.
Drew is flying up to help us get home at the end of this week. I can't imagine doing any of this without him, although I am physically alone most of the time. He's always my rock - both physically and mentally.
I've had a blast with my sister and my niece this week and it's been a good excuse just to spend time together. Kylie cracks me up when she tries to play hide and go seek with Kelly (my 7 year old niece). Kylie hides and seeks like a 3 year old and it's almost painful to watch her be the hider or seeker. You just want to stand up and shout "she's right there!!!", but you know you can't! She loves it regardless. I'm so blessed to have such wonderful family (my mother-in-law, Pam, and my sister, Rhonda) who care so much to come up and help us during treatment. It's almost like God's way of getting us all together. He's mysterious like that. : )
Please pray for Him to make ALL the decisions.
Love,
Raquel
Monday, May 1, 2006 3:38 PM CDT
Just after I updated the site yesterday, Kylie started developing a rash on her face, along with the temperature. We called the urgent care center at the hospital and they paged her doctor who instructed us to come in right away. They were unable to determine a cause of the rash - whether it was virus related or due to an allergic reaction to medication. They gave her more IV antibiotics while we were there and drew more blood cultures from her line. While we were there her temperature went down to 99 which was the lowest it had been since Wednesday. She started acting like she had a little more energy than in the previous days as well. Thankfully, we were discharged without being admitted, even though the Neuroblastoma doctor on call had told them to admit us before we even got there. Her fever stayed lower all night (a high of 100.5), but she still slept terribly. After waking up this morning she developed a much larger rash all over her body. I called the hospital and, once again, they instructed us to take her to urgent care in the hospital until someone could look at her and make sure she wasn't contageous. This time they said her rash looked more like an allergic reaction type of rash, but still couldn't say for sure. Luckily we were able to receive treatment anyway (the rash could have delayed it) and, I'm happy to report that the treatment went much better today. Of course, she still had to have two shots of Morphine, but it all-in-all went so much better than all of last week. The rash is till noticable, but we're hoping it will fade since we've stopped the antibiotic. We're also praying that the fever stays down and that this was just one terrible bug that's now GONE! The doctors seem perplexed and said they're very concerned, but I'm sure they'll be much less concerned if everything keeps getting better.
And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him. - Hebrews 11:6
I'll keep you posted.
love,
Raquel
Sunday, April 30, 2006 8:36 AM CDT
Wow, what a week this has been. I cannot begin to tell you how drained I am. I can hardly imagine how my little Kylie feels. As Drew told you in his posting last week, this has been a horribly bad week for Kylie. She has experienced more pain than in the previous 7 rounds, which was unexpected because as your body builds the HAMA in the blood, it tends to get a little better each round. She was screaming and crying and even trying to sit up and was begging me to take her home. She required more Morphine than normal (about 4 doses) and was feeling terrible the rest of the day until she went to bed. She developed a fever on Wednesday. They've drawn three separate blood cultures from her line which nothing has grown on any of them, thank God. (Positive blood cultures would likely mean an infection in her port line which could be fatal if not treated in a timely fashion.) We're very thankful she hasn't been admitted to the hospital, which is common practice when these kids develop fevers. Since Kylie's counts continue to be up and her cultures have all been negative, they've decided to continue treating her as an outpatient. She started pepping up last night for the first time and we thought we were in the upswing. But last night she was back up to 102.4 in the middle of the night and was moaning and begging for water all night. She even got sick on the bed once this morning which I think was from drinking too much water. The only reward to this is that I have an excuse to have her sleep with me in my bed! I just hope she is willing to get back in her bed after this is over!
Needless to say, this hasn't been the greatest of weekends here in NY. Drew flew in a little earlier on Friday because his mom had a return flight to catch. We've been staying late every day in the clinic due to all the tests and antibiotics they've been administering after treatment so someone had to be here to care for Christian. We were able to convince Kylie to ride in the stroller yesterday so she could get some fresh air. She even wanted to swing at the park and went down the slide a few times (although only with Drew holding her). She has barely eaten all week. She ate 3 bites of pizza yesterday, period. I'm sure if she could eat she'd feel a bit better.
My sister arrives today and I'm hoping Kylie will enjoy having my niece here. They normally have so much fun together.
Please pray that Kylie gets better soon. I can't imagine seeing her go through another week of the painful treatment while being so sick already.
Have a blessed week.
love,
Raquel
Thursday, April 27, 2006 12:50 AM CDT
Hello Everyone -
I wanted to do quick update on Kylie. As you already know the preliminary tests were all clear and although the urine results are not back the doctors say were are looking good. We were very nervous this time and can't praise God enough for his Awesome works with Kylie. He is amazing and we continue to be blessed!!
Kylie's treatment this week has been tough. Raquel said she seems to be in more pain than ever before. She spiked a fever yesterday and they gave her some antibiotics. Unfortunately she woke up at 5am with a fever of 102 and Raquel had to head to the ER with her. Everything checked out fine and they were back home by 6. I don't know how Raquel does it. Christian was up at 3 and then Kylie at 5. She gets no sleep and still keeps everything together. She is like the Enegizer Bunny. How lucky am I to to married to her and have her be the mother of our children.
I head up there tomorrow for relief. I can see a massage in her future! Thanks for continued support and all the prayers. We give all credit to the Lord and continue to put Kylie at the foot of Jesus' cross! We trust in him!
Luke 8:50
Hearing this, Jesus said to Jairus, "Don't be afraid; just believe, and she will be healed."
WE BELIEVE!!
The Barrys
Friday, April 21, 2006 2:47 PM CDT
"Holy is the Lord, God almighty. The earth is filled with His glory!" That's a few lines from one of our favorite songs from church. That's the first thing that came to my mind when Drew walked in the room and told me that the hospital had called and that Kylie's CT scan was clear and that the preliminary report from the MIBG is negative as well! We'll get the final report probably sometime on Monday and the urine results will come later in the week. We're obviously overjoyed to get this news. Drew and I did a very quiet high-five over Kylie (she was sleeping on the bed and I was on the other side of her) and then I was so psyched that I couldn't sleep so I'm up writing this! Okay, it's only 3:45 pm, but we're all exhausted and need naps! Even Christian's sleeping!
Kylie's diarrhea has improved in frequency, but is not gone completely. We're still hoping it's a parasite (the GI doctor hasn't called with those results yet), but will settle for an "overly sensitive tummy." It would just be nicer to get a real answer instead of a "probably".
Christian offically rolled over last week from back to tummy. I put him on his tummy for tummy time a few days later and he managed to roll over to his back! And, as he's napping right now, he rolled over and is sleeping on his belly. He seems to be doing things much earlier than Kylie. I told Drew just today that God gave us a huge break with Christian. He's simply the best baby ever and a complete breath of fresh air compared to what we've had to deal with in the past. His smiles are constant and they're definitely contageous.
I wanted to take a minute to thank my sister, Rhonda, and her husband, John, for giving us a second donation of frequent flier miles so that we could make this trip. Flights were more expensive this time and we would have spent close to $1,000 in airfare had it not been for them, plus Drew's ticket to come back out next weekend. My sister and neice are coming out the first week of May to help out as well and Drew's mother is coming on Sunday of this week. It never ceases to amaze me how much people are willing to help us. Even when all of this is behind us, we will never forget.
Have a wonderful and blessed weekend! We will!
love,
The Barrys
Thursday, April 20, 2006 7:10 PM CDT
Just a quick note to let you know that we arrived here safely on Wednesday. Kylie drank her contrast this morning like a champ and the first set of scans were performed. As of late this afternoon, nothing has come back so far. She received her MIBG injection after her scans and the actual MIBG scan is Friday morning at 8 am. We're hoping the results from today's scans will be in when Kylie gets there in the morning. The urine tests will take a few days to come back and we probably won't receive the MIBG results til Monday (or late Friday if we're lucky). We did get back a normal LDH result today which is one of the many markers they look for in Neuroblastoma patients. It's just one of the pieces of the huge puzzle.
We're praying for and believing in CLEAR SCANS! Thank you all for praying and believing with us.
We'll post as soon as we hear something.
love,
The Barrys
Tuesday, April 18, 2006 11:19 AM CDT
We had a horrible scare yesterday. Because of Kylie's diarrhea, the doctors in NY asked us to take Kylie to our doctors here in Atlanta. We were fortunate enough to be able to see her primary oncologist (Dr. Rapkin), which was a surprise to us since we didn't expect him to be there. Dr. Rapkin felt Kylie's stomach and felt "something". My heart dropped. He sent us down for an emergency ultrasound and (to make a long story short and to not keep you in suspense any longer) there was no visible mass. He feels confident that if it were a mass he felt that at that large of size that it would have shown up even on an ultrasound. They do not use ultrasounds to detect neuroblastoma unless it's a mass that will be able to show up. He figures what he felt must have been her spleen, which is larger than normal.
He said we're obviously not 100% out of the woods until we get the scans in NY, but we were so happy to get the results that it looks like another mass had not grown in her abdomen. We are more anxious than ever to get these scans overwith and to get the results. We typically get one result on Friday (CT of the head) and the rest on Monday. It may be one of the longest weekends of our life so far.
Kylie went three days in a row without diarrhea, but had it again this morning. Of course, that brought the butterflies back to our stomachs. Rotavirus was negative, but we're still waiting on other test results, such as parasites. We've done these so many times in the past when she had the diarrhea and they were all negative. We're actually hoping for a parasite now!!
Please keep Kylie in your prayers. Please pray that the scans are 100% clear and that God continues to keep Kylie cancer free and also that her diarrhea goes away for good.
Have a blessed day and thank you for your prayers.
love,
Raquel
Friday, April 14, 2006 12:37 AM CDT
It's been a really busy week! The sad part is, I can't even remember what we did that made it so busy! I think it's just day-to-day activities of life. Drew actually had to fly to NY for a few days, but this time it was work related. It's amazing how long it can take one parent to get two kids off to bed alone! I realized how much I appreciate him being here for their bedtime every night!
Kylie's been having diarrhea again lately. I hate to write about that on her site, but that's one of the symptoms Kylie had when she started getting sick. The doctors in NY said that it's possible that her previous chronic diarrhea is flaring up again. The oncologist in NY thought it wasn't related to the tumor. The GI doctor here in Atlanta felt that it was. So, of course, we want the oncologist to be right on this one! Thankfully, this time it's only happening 2-3 times a day (for the past two weeks or so), whereas before it was happening anywhere from 5-20 times per day. Yes, 20 times per day! Thank goodness she's going on the potty!
I'm getting mortified on Kylie's behalf for sharing all this with you! But I am only doing so because we would appreciate your prayers. Not only for her tummy issues to go away, but that God continues to keep her in good health. As a wise woman in my Monday night Bible Study said, God wouldn't bless Kylie with her miracle only to take it away from her. But God also wants us to be persistent in prayer so I will never stop asking him to continue to bless her.
We're off to NY again next Wednesday. Kylie has scans on Thursday and Friday and then she begins treatment on the following Monday for two weeks.
We hope you and your family have a wonderful Easter weekend. The price has been paid!
love,
Raquel
Wednesday, April 5, 2006 8:41 AM CDT
Just thought I'd update you on Kylie's dentist visit. The new dentist said that Kylie doesn't have 3 cavities afterall...she has FIVE!! They said that one may need a crown because it's covering several sides of the tooth. The dentist happened to have done her thesis on chemotherapy's effects on children's teeth and she said something about an enzyme in the mouth that's damaged by the chemo and also the lack of saliva due to chemo. These are things that can cause the excessive deterioration of the teeth and the enamal protecting them. So, due to the extensive work she will have done (including 4 sealants on her back teeth) they've decided to go ahead and set her up for sedation. I'm actually very happy with that decision because God knows that I wish I could get sedated when I go to the dentist for work, let alone a 3 year old! Unfortunately, the sedation is done at the hospital and they are only allowed one day a month so it may be a long wait before she can have the procedure done. She may have 5 more by then!
We're going to the Governor's Mansion this weekend for a special Easter function through Camp Sunshine. Kylie attended Camp Sunshine's spring fling last Saturday so she's really getting the hang of Easter egg hunts now. Unfortunately, she stopped after each egg she found and opened it and went through the contents. So her collection of eggs was slim.
Have a great day!
love,
Raquel
Monday, April 3, 2006 1:09 PM CDT
We had a somewhat eventful week last week. On Friday, me and the kids drove up to Heather's house for a stress-free day. First, while I was there Heather received a phone call from the D.A.'s office with the great news that the matter involving similar transaction in her sister's murder case was granted. You'll have to check out her site if you want to get more information. I'd hate to put anything incorrect on here. (www.caringbridge.org/ga/jennifercorbin). She was elated to say the least and it ended up being a celebratory afternoon. Until...
A little later in the afternoon Kylie and Heather's children went to go play on the playset with Heather while I fed Christian. I came down afterward and Kylie was all excited and said "look Mommy!" as she ran toward the swing and intended to jump on her belly onto the swing and fly back and forth like she always does at home. However, this time she misjudged the landing and went completely forward over the swing seat landing smack on her face. This caused her tooth to go inside her lip, loosened her top tooth and scraped up her face. After what seemed like massive amounts of blood to a stressed mommy, the cut stopped bleeding shortly after. I called the cancer clinic here in Atlanta for advice and they told me that I needed to take her to the ER at Scottish Rite due to a possible infection risk. So, at 5:00 pm on a Friday me and the two little ones pack it up for an hour and 20 minute traffic packed drive down to the hospital where she received a stitch inside her lip. The outside had a very small cut (which we actually thought was from her tooth going all the way through her lip, but it wasn't) that they decided not to stitch. She looked horrible with a swollen purple lip and scraped up face, but was happy and seemed right at home at the hospital. She even asked for a blanket, pillow and a movie and didn't want to leave (and continued to suck her thumb with a gash in her lip!). She has a dentist appointment today for her cavities and we'll have them look at the loose tooth as well. I'm hoping it will be okay.
Drew and I had a night out last night. He had tickets to Cirque du Soliel (if I'm spelling that right) and took two clients and their wives. We had a great time and it was so nice to get out of the house. We haven't had a real date night in so long. I was nervous leaving Christian for such a long period of time, but one of Kylie's babysitter's (who is also a neighbor) had her mother come down to help out which relieved all my worries!
Kylie did the sweetest thing yesterday. She came in with a handful of those furry looking flowers that you used to blow off and make a wish when you were a kid (are they dandilions??). My first thought was to rush them back outside so they didn't continue to get all over the floor, but when she looked at me with those big brown doe eyes and said "these are for you mommy", I instantly melted and then got a cup out and filled it with water and they are proudly sitting in my window. It's the little things like that which make you stop and remember how absolutely wonderful it is being a parent.
Have a blessed week.
love,
Raquel
Thursday, March 30, 2006 7:20 AM CST
I'm happy to say that Kylie hasn't complained about her legs hurting since the other night. I did consider they could be growing pains (thanks for the suggestions), but I truly believe in this case it was imagination. The girl has quite the imagination. It's hysterical. Drew and I just sit and watch her and then turn and look at eachother in amazement. She's definitely an extraordinary child in every way.
The only bad news of the week is Kylie's dental appointment this week. It was her first cleaning and official check up. They said that her teeth look strong considering the chemotherapy treatment. There is some discoloration on some of her teeth, but thankfully it's on the inside back section. The dentist said this may or may not happen with her permenant teeth when they come in. The bad news is that she has two real cavities and one that's starting. She has to get all three fixed next week. I was shocked that she would have so many cavities at such a young age, but another parent in our situation told us that it's common with chemotherapy kids because the chemo wears down the protective layer on their teeth. The dentist she went to said Kylie needs to see a pediatric specialist and that she would need to be sedated. The pediatric specialist said they insist on trying to do the work without sedation first and will reschedule it with sedation if necessary. Unfortunately, Kylie is required to take antibiotics before any invasive dental work due to the chances of infection in her port line. So, if they aren't successful on Monday, she'll have take the antibiotics all over again at another time. So frustrating.
Big step for me yesterday...I officially cleaned out the medicine cabinet that contained all the fluids to flush her lines, needles, syringes, etc. We've hesitated to do that before because we've known other parents who as soon as they did that, the child relapsed. I told Drew that we weren't holding true to our faith if we thought that cleaning out a cabinet would somehow give us bad "kharma". So, I did it. It was great tossing it all into the garbage. Just another step to remove a link between us and cancer. It also let me know how much crap we had to buy that we never used!! Thank goodness for insurance!
Drew is leaving to go out of town today to play in a charity basketball game with his company that's being played in NY. I'm assuming they think they've got the ringer flying in. Poor Drew hasn't been able to pick up a basketball since Kylie's diagnosis! I hope they both know what they're getting into! : )
Last, but certainly not least, March 28th marked the one year mark of Kylie's stem cell transplant. That was the exact day that they returned her stem cells to her after mega doses of chemotheraphy. Even after the horrific 9 hour surgery, 9 days in the ICU and one week in-patient after her tumor removal in January, the stem cell transplant could have been a worse experience for me. I guess both were life threatening, but at least with the surgery she was asleep most of the time afterward. The transplant was so difficult to watch. She would run extrememly high fevers for days at a time, throw up blood constantly and have sores literally insider her body going down her throat and digestive track. Watching your child go through something like that is one of the worst thing imaginable. However, where we're at today, makes it all worth it.
Have a blessed day!
love,
Raquel
Monday, March 27, 2006 10:10 AM CST
Another wonderful week. Kylie's runny nose has started to dry up. We think it was allergies and the Zyrtec is doing its job. Christian is healthy and growing every day.
Kylie has complained a few nights this week that her legs hurt, which are HUGE scarey words to parents in this situation. However, we feel pretty confident that it's just an excuse to get us in her room at night before falling asleep. She told Drew it was her feet, but when I came in she said it was her shins. Her and I prayed and asked God to take away her pain and then she told me He did it and they no longer hurt. Not that I doubt God's ability at miraculous pain removal, but I'm thinking this time it was a little dramatic acting at its best. Regardless, we continue to pray to ask God to protect her body from cancer ever re-entering it. My faith tells me it's already done, but it never hurts to keep asking!
Speaking of Kylie's bed...I haven't been able to log on to let you all know that Kylie is now officially a "Big Girl". She made the move to the Big Girl bed last week! Just as people told me would happen, she did it on her own and on her own time. She just said she wanted to do it one night and did. She's done very well most nights. She's only gotten out of bed in the middle of the night once and was asking for water, but went right back to bed after she drank some. Other than still waking up before dawn every morning (between 5:30 and 5:45 am....), she's doing great!
Kylie had her 3 year check up last week. She's officially crawled back up into the 75% for weight and the 50-75% for height! Do you know how unbelievable that is for us to hear? Just a few months ago she was in the bottom 5-10% for height and less than 25% for weight. God is good!
I'm still working on getting some pictures posted. Heather has a lot going on right now with court hearings and an upcoming trial date in April. I've forwarded them to her and she'll post them when she has a free minute. Although she never has one of those! Please pray for her family as they this trial approaches and for God to let justice be done for her sister's murder. (www.caringbridge.org/ga/jennifercorbin).
Have a very blessed day!
Raquel
Sunday, March 19, 2006 7:42 PM CST
What a blessed weekend this has been! Saturday was Kylie's 3rd birthday! Having your next birthday is something we all take for granted. Having our little girl turn 3 was something we weren't sure would happen when we were told she had cancer when she was just 18 months old. But, God has surely blessed us with another year and a half with her and we're looking forward to many, many more.
Kylie had a wonderful day. Just after waking up she was already asking if we were going to her party yet. Drew and I told her a few times in the morning "because it's your birthday you can..." something or another. She caught on fast because then all day she was saying "can you buy me that since it's my birthday" or "can I eat that candy since it's my birthday." About 3 packs of Skittles later, a few pieces of cake, a Diego DVD and countless other indulgences, she definitely wore out her special occasion pass! She had a great time at her party and had many of her friends there, including two of her 2nd cousins and one of her great aunts. She even had the honor of having her other Great Grandmother (on my side) there. It was a special day for us to see her so happy. I will be gravelling to Heather to post some pics up of Kylie's birthday soon. If it weren't for her, we'd be pictureless on this site!
Sunday we had Christian dedicated at our church. It was adorable seeing all the other babies as we lined up. It seemed just like yesterday that we were dedicating Kylie. With what we've been through with her and God's gracious healing of her, it made our day with Christian even more meaningful. A special thank you to Cathy Briede who served as our prayer partner during the ceremony and to Darrell and Teresa Hogan who also shared our special day with us.
Thanks for all the birthday wishes to Kylie!
love,
Raquel
Friday, March 17, 2006 8:49 AM CST
This week has been exhausting. I've had the first week that was a dose of reality of having two kids. The hardest part was the more than occasional potty accidents. And, of course, they always seem to happen when I'm nursing Christian or something like that. I think Kylie has been finally starting to show some signs of regression from Christian being here. It's amazing to see her go from fully trained (except for at night) to appearing not the slightest bit trained. Thankfully, the past few days have been 100% successful so I'm hoping we're on a forward track.
I have to share something with you all that broke my heart. Kylie through a most unusual tantrum last night before going to bed. She's been waking up way too early every morning and is overtired at night. She finally calmed down and Drew was reading her a book and saying good night and she asked him "Do you like me?" and he said "yes, of course." She then told him "Mommy doesn't like me. But she loves me." Drew assured her that I did like her and then came downstairs to ask me about it. I felt like the biggest loser when I realized what that was about. I was playing with her this past week and said to her "I don't like you, I LOVE you!" and she would smile and we would laugh. I had no idea that she would take it to mean I really didn't like her! After Drew told me that, my heart ached all night. I seriously wanted to wake her up just to tell her that I did in fact LIKE her! Drew said that he knew I couldn't wait til she woke up so I could go right in to tell her. He was right. It bothered me all night and every time I woke up in the middle of the night it was the first thing that crossed my mind. In fact, as I'm writing this, I just asked her "does mommy like you?" and she said "yes." Oh, my heart is starting to feel better, but the damage is still done. The moral of the story, please be careful what you say to your children!! Now I will tell her every day how much I love her AND like her!
Kylie's birthday is tomorrow and we're having a party for her with a few of her friends. I'll post next week and let you know how it goes. She's SO excited!
Have a great weekend.
love,
Raquel
Sunday, March 12, 2006 4:16 PM CST
I wanted to thank everyone who took part in the Jog For a Cause race on Saturday morning! We ended up having great weather (although a little humid) compared to the freezing drizzle of last year's race. The turnout was great. I want to thank Cathy Briede and Heather Tierney for volunteering. It was an early morning, but they were both there with smiles on their faces eager to help. I saw many faces that I knew - from those I've known from years before Kylie's illness to those who we've grown to know because of Kylie's illness. It was great seeing you all! I also want to thank Dr. Greg Cabrera of North Point Pediatrics for all his hard work in holding the race for the 3rd straight year.
I wasn't going to bring Kylie to the race because it was starting so early and I had a babysitter for Christian, but I decided at the last minute to bring her so everyone could see her again and how wonderful she looks. She was very tired when we first got there and wanted me to hold her, but then she got the hang of things and started helping pass out the t-shirts.
Drew arrived back in Atlanta this morning. Kylie's been asking for him the past two days, especially at bedtime. She kept begging me to go get him so he could say good night. That broke his heart, you know! I wish I could have been there with him to see him receive his special award. I got a few glimpses of him on TV looking all handsome in his suit. He had a great time, but he's glad to be home (or at least he says he is....I can't help but wonder what a few nights of uninterrupted sleep must feel like!).
Thanks again to all of you who came out on Saturday morning (and to you Jennifer P. who signed up even though you couldn't be there!). We know you all had other things you could have been doing on a beautiful weekend morning, but the fact that you took time out for Kylie means the world to us.
love,
Raquel
Friday, March 10, 2006 12:22 AM CST
Is it Friday already? I know everyone who's at work is thinking it's way overdue! But, for me, the days just fly by. I guess it's from being so busy. Between the three of us (me, Kylie and Christian) we had two doctors' appointments, physical therapy and gymnastics. I think Thursday was the only "free" day.
Speaking of gymnastics, I finally broke down and told the instructor that Kylie is slightly physically delayed and explained the situation to her. I wasn't going to say anything because I didn't want her to be treated any differently, but I was urged to by several others. The instructor watched out for Kylie during the class and then approached me afterward and said that Kylie did so well that she wants her moved up to the 3 year old class because she's not being challenged enough! It was a proud moment for me. She's come so far and I was so moved to hear that she's doing better than expected. More prayers are being answered! So, after her birthday on the 18th, they're going to make a rule exception and move her up to the 3 year old class in the middle of a session. I've already signed her up for summer gymnastics, as well as dance. Girls are so much fun!
Christian had his 2 month check up today. He's doing great! Of course, just like every nursing mother, I was afraid he wasn't getting enough. My worries were put to rest when I was told he had gained almost 2 lbs. (to 10 lbs. 14 oz.) since the last visit and had grown 3 1/4" to (23 1/4"). He actually went from the 5-10% range in height to the 50-75% in less than a month!
Last, but certainly not least, I wanted to mention Drew's special weekend. He was named a "Legend of the ACC" and is being honored at the ACC tournement this weekend in Greensboro, N.C. I would have loved to have gone, but since this is the same weekend as the Jog for a Cause race, it wouldn't have worked out. So, he will be proudly representing Georgia Tech at a ceremony during Saturday's game. (Too bad Ga. Tech's already been eliminated....) Congratulations to my awesome hubby!
It's not too late to walk/run or volunteer tomorrow for the race (www.jogforacause.com). We're going to have beautiful weather! They still desperately need volunteers and I would appreciate anyone who will do so on Kylie's behalf.
Have a great weekend!
love,
Raquel
Monday, March 6, 2006 6:51 AM CST
Happy Monday! Something Louie Giglio said in service yesterday got to me. Instead of thinking, "oh, it's Monday," we should wake up every day thinking "How great it is to be alive!" For each of you reading this, God has blessed you with another day!
We had a great weekend, as usual. Just being together is wonderful. Kylie enjoyed playing with her friends a lot over the weekend. Drew and I were able to make it out to dinner with our couples bible study group last night (with Christian in tow) and Kylie played with the Briede girls and shared the same babysitter with them. She loved it and didn't complain a bit about us leaving.
Kylie has a busy week with physical therapy and gymnastics. She loves both. We hope that gymnastics will enable her to cut PT down to once a month or cut it out altogether. I'm expecting her leotards to arrive in the mail today or tomorrow. The thought of seeing her in a leotard brings a smile to my face. I can't wait.
This is your last week to sign up for the Jog for a Cause race this Saturday. Please go to www.jogforacause.com for information and to register. As I mentioned, to all you non-runners there is an extreme need for volunteers as well.
Happy Monday!
love,
Raquel
Thursday, March 2, 2006 6:53 AM CST
I've wanted to update all week, but it's been crazy around here trying to get caught up after being out of town for almost 3 weeks. Not to mention having the actual opportunity to get on-line with a newborn.
Things are wonderful around here. Kylie is doing awesome. She's having some problems sleeping again and she's waking up every night crying for 30 minutes or more (once it was 2 1/2 hours...). We had to stop going in her room because it became a revolving door between Drew and I with Kylie saying "Go get mommy! to him" then "Go get daddy!" to me, over and over. We finally realized we were being manipulated so we had to cut that out! We're hoping it will stop soon and are thinking that maybe it started with the Morphine withdrawals which can interrupt sleep. We'll see....
Kylie took her very first gymnastics class yesterday!! Her bottom lip went out when I took her in and she didn't want to go in with the other kids, but then I walked her in the gymnasium to her mat and she stayed without running back after me (which I half-way expected). I saw her cry once or twice, but she stopped quickly and still didn't try to leave. When she came out after it was over she said "You TOLD me I was going to have fun! You TOLD me!" and said she wants to come back. Okay, I have to admit that I welled up watching her. She was just a normal kid for once. Of course she's probably the oldest child in the class (it's a 2 year old class but you have to be 3 by the first day of class and Kylie won't be 3 til the 18th) but because the others were younger, she fit right in physically with them. It was great to see her have a good time with the other kids in an environment other than the hospital.
Christian's doing great too. I'm hoping he's finally getting into his sleep routine. He's still waking up twice to eat at night, but goes right back to sleep afterward. I'm not going to complain about that. He's definitely gained weight and is finally starting to fill out his 0-3 month clothes. We're having him dedicated at church on March 19th. It seems just like yesterday that we had Kylie dedicated there. Time flies by.
Drew's doing great, as well. I think now that we've moved Christian out of our room Drew's finally getting a little more sleep so he's feeling better. Those Barry boys need their sleep, let me tell you.
I'm looking forward to the weekend so we can just hang out and be a family. We take that for granted sometimes. Doing nothing is everything!!
Please don't forget to go to www.jogforacause.com and register for the race on March 11th here in Alpharetta. Or, if you'd like, you can volunteer instead of running. I'm looking forward to seeing all of you who can join us.
love,
Raquel
Thursday, February 23, 2006 4:28 PM CST
Only one more day left!!! I can't wait to get home! This trip has certainly flown by fast. I've really enjoyed having our family up here and it's made the stay more tolerable.
Kylie's last few days have been pretty much normal - not great, but not too bad. There's definitely been worse days. The pain sets in much later toward the end of treatment, which is a plus, however, the past two days it's also lasted much longer as well. One of our nurses said it's probably because Kylie's beginning to build up the HAMA in her blood, but that it doesn't mean she's going to actually HAMA this round. (For all of you who don't know, HAMA is the goal here.) Drew and I just keep praying for GOD to let it happen when HE knows is best. Yes, it would be great to stop having to travel up here for almost 3 weeks at a time every 8 weeks, but we have total trust in HIM and wouldn't change anything about HIS plan.
Drew flies back up tomorrow and will help us get home on Saturday. I can't imagine doing it without him. I thought it was hard traveling with just Kylie! Both are angels on the plane, it's just the "stuff" you have to lug along, oh and don't get me started about having to go through security at the airport with kids! Uggh!!!
Don't forget to go to www.jogforacause.com to get information on the upcoming race on March 11th.
Have a great weekend!!
love,
Raquel
Tuesday, February 21, 2006 9:46 AM CST
I finally have access to another computer. It's amazing how we become so attached to these things. I've felt lost without it.
We had a very cold and quiet weekend here in New York. Actually, that's just the way I like it. I'm truly a winter person, believe it or not since I live in Atlanta. I love warm clothing and fires and drinking hot tea to warm up on the inside. Friday was Drew's birthday and we attempted on Saturday to go out to dinner to celebrate with Kylie and Christian to a Malayasian resturant Drew's been eyeing. After braving the freezing cold, Kylie's morphine withdrawals started kicking in and after stuffing down our food, we ran out of there before we were kicked out. We actually were dumb enough to try it again at a much nicer place on Sunday night. We had this dinner planned as a "date night" with just Drew and I for a post-Valentines celebration, but Drew's mom's flight was delayed so we had to take both kids. After repeatedly telling myself "what are we thinking after last night!!", we were both pleasantly surprised that not only did Christian sleep the entire dinner, but Kylie was wonderful. It ended up being a very nice night afterall.
Drew's mom (Pam) arrived late Sunday night after some weather delays in California. She stayed with Christian all day yesterday while Kylie and I went to the hospital for her very long day. Monday's are always crazy and we didn't get back til after 6 pm. It was the first time I had left Christian for a long period of time and it was nice to be able to have some quality time with Kylie, even if 1/2 of it was full of pain. Pam was in heaven getting to spend the day with one of her two newest grandchildren. I had no worries. I knew he was in good hands.
I'm excited that we only have a few more days left. Drew is out of town in a sales meeting in Florida and will fly back up Friday to NY to help us all get home on Saturday. We are looking forward to it. Kylie's third birthday is coming up on March 18 and it gives us all another much needed diversion.
Thanks to all of you for checking in and for your continued prayers.
love,
Raquel
Friday, February 17, 2006 9:12 AM CST
It's finally Friday, which means one week down and one to go. Wednesday and Thursday were each progressively better (if I can even use that word) for Kylie during treatment. They were both extremely painful, but the pain seemed to subside earlier and she wasn't screaming out loud like she was on Monday. She just cries and asks me to hold her hand and rub her belly. She also tells everyone to "get out!" or "stop laughing!" if someone happens to laugh about something when they think she's finally asleep. That part gets quite funny actually.
Friday also means that my sister and niece will be leaving, which isn't so good. I've really enjoyed having them here, even under the circumstances. Kylie's had a lot of fun playing with Kelly and even has been running around and playing hide-n-go-seek at night after treatments some days. It's a really good thing to see. I'll miss them.
Drew flies in today, but OF COURSE, there's a wind advisory here and the flights are already delayed over an hour. Would you expect anything less??? Today's his b-day so we're all looking forward to a nice weekend together to celebrate. I know he misses us all and being home alone without his family is very hard on him.
Don't forget to check out www.jogforacause.com to find out how to register for the race on March 11 to benefit childhood cancer (and Kylie too!). Runners AND volunteers are needed!
Have a blessed weekend and pray for an easier week next week for Kylie.
love,
Raquel
Wednesday, February 15, 2006 6:28 AM CST
I can't believe it's been a week since we've been here in New York already. I'm so thankful Kylie, Christian and I were able to have Drew here for the days of Kylie's scans. No parent wants to miss being there for that. Speaking of scans...I have to stop and give all glory to God for Kylie's clear scans. We truly believe that He's the reason. Drew and I both agreed over the weekend (before getting the news) that for some reason this time we were more confident than ever in the scans being clear. I think we're growing in our faith and trusting Him more and more. Thank you God!
Kylie's treatment was really rough on Monday and almost as bad yesterday. She was able to sleep a little more afterward yesterday since they didn't get started as late as Monday so it helped some. She turns into the Incredible Hulk afterward and doesn't like anyone or anything. It's standard among the children and is caused from the pain medication. It's hard to see her that way because you know she can't help it. Everything else is going as expected.
My sister and niece arrived on Monday after their flight being cancelled on Sunday due to the TWENTY SEVEN inches of snow we got here. All airports were closed on Sunday, which meant Drew got an extra day here. There's nothing better than getting snowed in with your family. If only we had a fireplace here in the hotel then everything would have been perfect! Kylie's had a blast playing with her 7 year old (she just corrected me that she's 7 and a HALF) cousin, Kelly. She actually had Kylie running around the hotel room last night laughing and playing. What a wonderful sight, especially after a day of grueling treatment. My sister, Rhonda, is helping with Christian when I need it and she slaved away making me a gourmet meal last night. I'm not sure what's better, the help or just the great company. She leaves on Friday (Drew's birthday by the way) and then Drew's mom arrives on Sunday to help me for the next week.
Just wanted to give you all an update while I had my sister's computer handy. Thanks for all your prayers for Kylie's clear scans. As always, He listened and has continued to show us his GRACE.
love,
Raquel
Monday, February 13, 2006 12:11 AM CST
ALL CLEAR!!!!
Just as suspected, but always a relief...
Drew left his computer at home so just wanted to let you guys know as soon as possible.
Love,
Heather
Thursday, February 9, 2006 7:57 AM CST
I didn't get to post before we left, but we arrived in NY yesterday. Kylie has scans today and tomorrow, along with a bone marrow biopsy. The doctors said that if her bone marrow is clean (which it WILL be) that they may start doing the biopsies every 6 months instead of every 3. That's a relief for us because it involves very long and thick needles that they insert into her hips to pull marrow out of her bones. After the pain medication wears off, she's in a moderate amount of pain and she walks funny for a few days. It breaks our heart to see it.
Drew and I discussed last night how we're back to reality as soon as we get here. The 8 weeks off in between treatments are full of fun and normalcy and then coming here brings back all the pain of what we're dealing with. Even though I fully believe that God has healed Kylie, just seeing her go through the scans process and antibodies is so hard. No one should have to go through this, especially children.
Kylie's very excited because since she's been going on the potty so well, she doesn't have to have a "pee pee bag" for them to collect her urine for another one of her tests. This involved a plastic bag, a tube and MAJOR adhesive glue that was extremely painful for her when they removed it. It was another incentive for her to become potty trained. She has her occasional accident, but has been accident free for 4 days now. We're so proud of her, especially when she has so much going on in her life.
We will post the results of Kylie's scans as soon as we receive them. Hopefully we'll get some news later today, if not tomorrow, on today's scan. Tomorrow's a big one though and we hope to hear the results back later tomorrow, but maybe not til Monday. Bone marrow takes a bit longer (possibly over a week) to come back.
PLEASE send up lots of prayers for Kylie's clear scans. And, as you say them, BELIEVE that it is done.
love,
Raquel, Drew, Kylie and Christian
Friday, February 3, 2006 4:43 PM CST
I had been planning all week to post to let you know about the upcoming "Jog for a Cause" race and Deborah Waters reminded me to do it by asking about it in the guestbook! Thanks Deborah!
If any of you remember, last year we encouraged everyone to participate in the 2nd annual Jog for a Cause race which was held in March here in Alpharetta. We had a great turnout in support of Kylie and many of our friends graciously donated their time to help sell "Cure Kylie" bracelets and pass out t-shirts.
This year, we've been very fortunate that Kylie's fund has been added to the list of those benefiting from the proceeds of the race, along with Camp Sunshine and The Keira Grace Fund for Children's Cancer! The 3rd Annual Jog for a Cause will be held March 11, 2006 at the Mansell Crossing Shopping Center (Barnes & Noble parking lot) beginning at 8:00 am. This year the race has been upgraded to not only be a 1-mile fun run and 5k run, but to be a 10k Peachtree Qualifier! The cost of the race is $15.00 for advance registration until 3/2 and $20.00 after 3/2 and on race day.
Kylie's pediatrician, Dr. Greg Cabrera from North Point Pediatrics, is responsible for creating and holding this race every year. He has been a God-send in our lives as he is the only doctor who actually tried to find an answer to Kylie's symptoms when no one else would listen. We were honored that he has chosen Kylie to be one of the beneficiaries of this race. In addition to runners/walkers, Dr. Cabrera has also asked me to get as many volunteers as possible for race day. This is the area where they need the most help. Since I can use my "I just had a baby" excuse, I'll be adding myself to the list of volunteers. We hope that many of you will decide to run and to volunteer.
If you are interested in finding out more about the race, you can go to www.jogforacause.com or call Jill at 770-664-0088 (the office of North Point Pediatrics) or Pacesetters P.R. at 678-795-0115.
They are also accepting any sponsors who would like to have their names printed on the race day t-shirts for only $250 (or more if you'd like!). Current sponsors are Coke, Sweet Tomatoes, Citadel Pest Service, Quandrant Real Estate Advisors, Kicks 101.5 and the Alpharetta Optimist Club.
Drew and I are grateful for all of you who participated last year and those who will participate or volunteer this year.
love,
Raquel
Sunday, January 29, 2006 11:53 AM CST
It seems like I have to start every e-mail, and now journal entry, with "sorry I haven't written in a while...." There's no exception now. It never fails that if I even try to log on there's either a Kylie "emergency" (such as, "mommy, I have to go potty") or Christian starts crying. I think they have ESP when it comes to mommy trying to do something. That's okay, at least I'm showering (most days...) and getting my teeth brushed (yes, every day...).
Kylie is doing great. She's still my little chunky monkey and continuing to eat like a champ. I'm waiting for her height to catch up to her current girth. Her physical therapist has began seeing her every other week instead of every week because she feels Kylie's making so much progress. She's finally started jumping, although it's only about 2 inches off the floor. But, nevertheless, we are SO proud of her!! Yesterday we took her to the park and for the first time she played by herself without us having to help her up every step and her being afraid to go down the slides alone. She played like a pro and even made a few friends. The sad part was watching her yell to the little girls "hey, wait for me!" when she fell behind. I know that one day she'll catch up 100% to every other child her age. You never know, she may surprise everyone and become an Olympic champion!
Speaking of her playing with other children...we signed Kylie up for preschool for next school year! I am so excited at the thought of her being able to play with other children and face challenges that other children face every day (okay, so the thought of having a few mornings off a week for me is quite exciting too!), but when I think about dropping her off for the first time, it definitely tears me up. We know it's for the best, but it will be hard. I asked her if she was happy about going to school and she said "no, I will cry, I'll miss you." Now that didn't help either!!! I was trying to find a program for her to go into for the rest of this school year, but I haven't found anything locally with availability as of yet. She really needs to be around other children on a regular basis.
Christian is continuing to do great. I can't wait to find out how much he's grown at his next appt. on Feb. 7th. His cousin, Cade (Drew's brother Brent's new baby), is already 9.5 lbs and is 4 days younger than Christian! I think Christian has a while to catch up! He is still wearing preemie clothes (but starting to outgrow them)! The only negative is that he's still not sleeping well at night. He sleeps great during the day, although some days he's up all day too, but is awake most of the night. Actually, he falls asleep hard just after he feeds, but as soon as we try to lay him in his bassinette he wakes up and cries. The process continues several times before we end up holding him the rest of the night. We're both exhausted from sleep deprivation. I just hope this is a VERY SHORT phase. Oh, and Kylie has woke up at 4 am and 5:30 am two mornings within the past week. Yawn....
Drew's still working hard, even on such little sleep. He even has a second job doing a little TV work that gets him home late once a week. They've even asked him to take on another segment that runs in a few other states as well as the local one. If you can't tell by my writing, I'm very proud of him. I read an article written by Drew's dad this week that included the fact that Drew retired from professional basketball when Kylie was diagnosed. The fact that he quit what he loves to do and was the only thing he had ever done (and was the first one in his family to have to do so, even though he's the youngest) should have been so hard on him but yet it was a no-brainer for him because of the love he has for Kylie and our family. He went to work as in the "real world" to support our family when all he ever wanted to do was play basketball. For that, I love him dearly.
We only have a little over a week left until we go back to New York on February 8th. Please start getting in those prayers for Kylie's upcoming scans on the 9th and 10th. We both have faith that the scans will continue to be clear, but we still would like and appreciate everyone's prayers. We know more than anyone that God does answer prayers!!
Thanks for your patience in my update. Only reason I could log on now is because Drew's on a walk with both Kylie and Christian.
Have a great and blessed week.
love,
Raquel
Saturday, January 21, 2006 4:23 PM CST
Can you tell our little angel has gained a few pounds?? If you can see in the new pics, her cheeks are chubby (and so are her thighs!). That's such a complement ONLY at this age! She's doing great. She's eating a ton and she is really coming along physically. After a couple months of physical therapy she can finally jump a few inches off the ground and walk down a few stair steps without holding on. Most of it is balance issues, but some of it is just trusting herself. She attended a birthday party today at one of those inflatable jumping places and Drew said she took off and played like a pro. We're so proud of all that she's accomplished. We're actually planning on putting her in preschool soon, fall at the latest, in hopes that she'll catch up even more.
We've been having a great time around here just getting to know Christian and working him into our family. Kylie adores him and so do we. Kylie has a cold so we feel so bad having to constantly tell her not to touch his hands and face. I'm sure she doesn't quite understand. She loves to kiss him so it makes it hard.
Although he's definitely a content baby, Christian isn't the best sleeper. He's been awake a lot during the day AND night and having some major screaming spells which seem to be definite pain screams. Drew's been a walking zombie while going to work every day. I'm able to go on much less sleep them him (those Barry boys sure are sleepers!) so I am able to manage my "job" here at the house. The doctor put Christian on Zantac for possible reflux, which Kylie had too.
I'll try to update more often as I get used to my role as a mother of two children. It's been even better than I could have ever imagined. It may be the hardest job in the world, but it's certainly the absolute BEST job in the world!!
love,
Raquel
Monday, January 16, 2006 12:01 AM CST
I'm finally getting around to posting a new journal entry myself. After coming home from the hospital 9 days ago, it's been a constant feeding, rocking and resting rotation, along with trying to spend time with Kylie. Thankfully, Drew's mother was here and helped all four of us out tremendously. I haven't cooked since before Christian was born and my house is neater than ever! Kylie and I were even able to have a Mommy/Kylie-only lunch together on Friday which was nice.
I wanted to thank all of you for your sweet notes on the message board. We've also received some very nice cards in the mail. It's great to know that people care about our family so much, especially those who have never met us in person.
The birthing experience was much more than I could ever put in to words - partially due to the lack of pain medication, which made the end result even that more of a joy, but also due to Kylie's illness. Seeing the whole miracle of life pan out before your eyes after seeing your first born suffer and be given a 30 aximum chance of survival...well, it's just awesome to see the rewards God has for us. He's given us Kylie's healing and now a healthy newborn son.
Physical recovery for me was very quick. We were out of the hospital about 36 hours after delivery. Of course, then the sleep deprivation sets in when you get home. I'm just glad I had help the first week at home. Tomorrow (Tuesday) will be the true test - when I'm home alone with two children! I'm sure we'll be fine. And, boy does it sound weird to say "TWO CHILDREN"!!
One last note. Everyone warned us that Kylie would regress after Christian's birth. Well, there have been some instances (she's tried to get in the bassinette and vibrating chair and I believe has had his pacifier in her mouth a few times), but I'm proud to say that our little girl is almost completely potty trained! We were afraid she'd want to be in diapers again after seeing Christian use them, but she's done even better since he's been born. She has her occasional accident, but mainly she's been great. We're so proud of her and wanted to share it with you all!
Thanks again for all of your thoughts and prayers.
love,
Raquel
Thursday, January 12, 2006 10:40 AM CST
Sorry we have not posted in a while but things are a little hectic around the Barry house these days.
Christian Grant is adorable. I know I am a little biased but he is so cute. He and Raquel are doing great and everything has gone smoothly since we have been home. We have to thank my mother for being here and helping out!! Without her I wouldn't feel comfortable going to work and leaving Raquel at home with Christian and Kylie right after giving birth.
We are starting to settle in with the new addition. There is not much sleep going on but Raquel is definitely SuperWoman!! She survives no sleep, a cold and NO epidural during birth. I told her there are no trophies handed out for not using an epidural but she wanted to try it all natural. I should get her a trophy, she was amazing. I will let her tell that side of the story.
I just wanted to update and let you know how grateful we are for all your support for Kylie and now Christian. We truly appreciate everything everyone has done and simply can not express in words how much you have affected our lives. Thank you all so very much!! God is at work here!!
We are truly BLESSED!!
Drew, Raquel, Kylie & Christian
Friday, January 6, 2006 6:33 AM CST
New photos have been added to the photo section!
*************************************
Christian Grant is here!
He weighed in a 6 lbs and 10 oz and is 19" long!
He arrived last night at 9:16 pm after a LONG labor of NATURAL childbirth. Raquel was an absolute ROCK STAR!!!
He is so stinkin' beautiful! I will post more photos today and a longer report, but first I have to get my kiddos of to school. I just wanted to add this quick because I know he has a fan club! :)
Love,
Heather
**************************************
Wow, wow, wow, WOW!!!! Words could never adequately describe the entrance of the newest Barry baby into the world. New life is magic and so entirely precious.
Raquel and Drew got all checked in and ready for induction. Raquel’s blood pressure was very high and worrisome. Her labs came back and the midwife was a breath away from putting her on magnesium sulfate. This would have brought her blood pressure down, but in the process- make her very sick. Finally, with some dim lights and laying flat on her side, her blood pressure crept down to a more respectable level and the magnesium was avoided. Despite not having the magnesium, Raquel felt very ill the whole labor and I suspect is has a great deal to do with her blood pressure. She also has a terrible cold so I’m sure that contributed as well.
When I got to the hospital, Raquel was convincing herself to attempt a natural childbirth. She had talked to her midwife about this the day before and had wearily persuaded herself that she could do it. It was hard to watch her through each contraction and not yell at her to just get the epidural! BUT she was amazing. If you have ever witnessed a natural childbirth on A Baby Story or something close to it, her labor was a star show.
Things really began to pick up and she was in hard-core labor around 5:30. Raquel first labored with a birthing ball. If any of you know what that is.. it is like a large exercise ball you sit on designed to ease the contractions.. if there is any such thing, ha! Then she decided she wanted to try and get into the tub to alleviate the pressure and use the buoyancy to relieve the weight. I know this may seem silly, but we were all so proud of her. Raquel is so physically and mentally tough.
The contractions started to become unbearable and by this time Raquel REALLY wanted an epidural. Unfortunately it was too late and Raquel didn’t care that it was too late, she wanted an epidural and NOW!!! That did not happen as the baby was very close and, by the time she got the epidural, the baby would have been here. It got to the point that I was holding my breath for her and I was shaking so bad that I could hardly stand.
Drew hung in there like a trooper. He was looking a little dismayed at one point, but he grew some sea legs and was exceptionally strong for Raquel throughout the entire labor. He held her hand and rubbed her back and just was an awesome husband. You have never seen such a beaming face when that sweet baby boy was born. He lit up like a Christmas tree and was a giddy beyond description. Drew, of course, cut the cord and was, without a doubt, a majorly proud pop... of both his son and his wife. Raquel was just nothing shy of amazing.
The really wonderful thing about Christian’s birth was that everything was so gentle (um.. not the contractions, but the birth in general). Christian was born in the tub and you have never seen such a contented newborn. It was not a cold WELCOME TO THIS WORLD birth, but so temperate. He gave one tiny squawk (and this was only after persuading him to do so) and he just opened those big eyes right up and looked all around. He just looked like the most beautiful and alert newborn I have ever seen. I just cannot convey the experience. His did not so much as flinch in disapproval until his bath and that was nearly an hour after his birth. He acted like a three month old that had just had a good lunch. Complete placidness, but exceptionally attentive. Amazing, amazing, amazing!
Raquel had a hard time after delivery as well. She just felt so nauseous and generally unwell. When I left them last night, she looked so pale, but she did manage to feed Christian and, do so, happily. Both mom and dad were exhausted, but also elated. What a beautiful family. I cannot wait to hear all about Kylie’s introduction to her little bro. She is going to be a great big sister and, if I know Kylie, that little man is going to stay in line! LOL Kylie is a little rocket and she’s got that attitude. Oh she cracks me up.
I have all sorts of photos and I will get them up today in the photo section of the site, so you’ll have to click to them.
Please continue to send up prayers for the family. What a blessing they are to each of us. I am so incredibly fortunate to have them in my life.
May God’s blessings be yours today and always.
Love,
Heather
Thursday, January 5, 2006 9:06 AM CST
Oh my goodness, oh my goodness! It's baby day! Whooohooo! I am so excited! Kylie is going to be a BIG SISTER!!!
Raquel is being induced today at 12 pm. Unfortunately Raquel has developed pre-eclampsea and it is time for that sweet baby to be born. So please please pray for a quick and safe delivery of our newest prince or princess and that mom and baby will be perfect healthy and happy.
I will be heading up to the hospital in just a bit and I will be bringing my camera so HANG TIGHT!!! As soon as I get home I will post the big news and, of course, photos.
Please start sending up the prayers. Baby Barry will be here TODAY!!!
Love and blessings,
Aunt Heather :0)
Monday, January 2, 2006 3:15 PM CST
I can't believe it's 2006 already. 2005 contained such mixed emotions. Both sad in dealing with Kylie's illness and happy when we found out she was blessed with a miraculous healing! Of course, seeing her go through the treatments in New York continues to be sad experiences, but we know they're for the best. We're certainly in good hands all around.
Good news! Kylie has now finished all 6 rounds of her Accutane! She never has to take the "chocolate medicine" (Accutane pills squirted on top of Hershey's chocolate syrup) again! Sometimes ending any therapy is a little scary, but we continue in our faith that we are just following the 1,2,3 list of things to do and that this will all be done with at some point soon.
Drew's had a few days at home to re-bond with Kylie. He spent every minute that he wasn't with her by painting her new "big girl" room. He bought primer and pink paint (her choice, of course) and spent hours and hours on Friday and Saturday trying to make it perfect for her. He then took on the task of painting some furniture for her for the next two days. He did a great job. We're now waiting for the fumes to go away and give the big girl bed a try. She was going back and forth between a "Dora" theme and the "Disney Princess" theme. She (and we) decided on the Princess theme and we've ordered her some new bedding to go along with it. Her Nonni (Drew's mom) will be in town this week and will no doubt have a blast in helping to decorate it for her. Having a little girl is so much fun - at 2 anyway!
Obviously I would have mentioned it earlier, but I have yet to go into labor. I tried for both a 2005 tax deduction AND the first baby of 2006, but neither one was to be. I'm a little over 39 weeks now so we should have some news for you soon.
We hope that you all have a blessed new year and we thank you for continuing to follow Kylie's progress and keeping her in your prayers.
love,
Raquel
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