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Wednesday, June 30, 2010 4:32 PM CDT
It always amazes me how much time has gone by since my last posting. We're enjoying the rediculously hot days of our summer.
We surprised the kids with a trip to disney in June. We didn't even tell them until Drew drove up to the Magic Kingdom sign. I think Kylie was in shock because she didn't even say anything. She just sat there in disbelief. We've been promising to take her for the past few years so I know she was very surprised. We had such a great time. I had so much fun just watching their faces light up at each new thing they saw.
Kylie and I just returned from New York on Monday for her latest round of tests. The only results we have back so far is her CBC, which is all normal. We're still waiting on a few other blood tests, her Echocardiogram and her urinalysis. Her physical check up with the Long Term Follow up Care doc went very well. She's still growing at an amazing rate (3 cm since her last visit). The Nurse Practioner said again that she can't believe how much she's growing, that Kylie's hearing wasn't affected and that she doesn't have any fatigue issues. These visits just reconfirm what a true miracle her healing was and continues to be. Words cannot express how thankful I am to God for what He's done. I know He does everything for His own reasons and I do not take that lightly.
I was able to spend a little time with a mom who's daughter went through treatment with Kylie and unfortunately relapsed early this year after being 4 years cancer free. It absolutely breaks my heart to see them go through this again. If you can please take a minute to pray for Alina and her family, I would certainly appreciate it. You can visit her site at www.caringbridge.org/visit/alinagalletta.
Thanks for your prayers. I will post as soon as I get the rest of Kylie's results, but I wanted to take a minute to tell you what's going on in the Barry household. Please continue to pray for Kylie, all children with cancer and a cure for ALL cancers.
love,
Raquel
Thursday, April 22, 2010 2:32 PM CDT
5 1/2 years ago I pictured sitting down at the computer and writing this post on Kylie's journal. I can't believe that it has been that long ago since we started this journey: October of 2004. Now, April 22, 2010, I am thrilled to write that Kylie is officially FIVE YEARS CANCER FREE!!!! We have waited for this day for years and now it is finally here. We were told long ago that if she makes it to the 5 year mark that her chance of relapse goes dramatically down. We know in our hearts that God healed her and that she will never again have this horrible disease, but it is so good to have arrived at this joyous date. Of course we know that God is solely responsible for her healing and we give all glory to Him. We also are so thankful that it was in His will to heal her because we know that nothing is guaranteed to any of us.
We are so blessed to have such wonderful friends and family who have stuck by our sides throughout Kylie's illness and recovery. Thank you for all of your prayers and the help that you've provided to our family over the years.
Please join us in giving thanks to God today for Kylie's miraculous healing. God is SO good!
love,
Raquel
Sunday, March 28, 2010 2:29 PM CDT
Where has the time gone? So much has happened since I last updated. Mainly, Kylie turning 7 on March 18th! We didn't have a party on her birthday because Drew was traveling every weekend. We planned it on the first weekend Drew was actually going to be home all year - this weekend. So, last night we had a total of 10 girls over for a Spa Party, including manicures, pedicures and facials. There was also lots of dancing and even a sparkling cider toast, complete with champagne glasses. All the girls, except for one, were able to stay over and have a slumber party as well. Drew and I kept wondering what we got ourselves into, but it ended up being great. Poor Christian didn't know what to do with himself having all those girls over.
We also had the Jog for a Cause on March 13th. It was a huge success! We had approximately 1,100 runners this year! God was so good to us with the weather this year. The forecast called for rain, however, the weather was beautiful throughout the entire race. Then as soon as it was finished, the weather started becoming cold and then it rained the entire rest of the day! Thank you God for answering our many prayers! Besides the funds from the race itself, we also raised another approximately $10k online from donations from many generous people. I am so proud to be a part of this event. Thank you to all of the volunteers who came out to help. And a special thank you to my sister, Rhonda, who flew down from Virginia to help me out since Drew was traveling.
Christian had his very first baseball game a couple weeks ago. He's only had two total so far because of cancellations due to weather. He's yet to reach first base, however. lol. He's hit the ball each time, but he can't seem to get dropping the bat and running as fast as you can to first. He would just stand there. Once he ran but then stopped just short of first base. Last game, he actually did it perfectly, except the ball ended up being called foul. Oh well, he's only 4. Plenty of time to learn!
Another weekend has passed by so quickly. I'm just very glad to have my family together again.
Have a blessed week! 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
Friday, February 12, 2010 4:47 PM CST
It's snowing in Atlanta! Who would have thought! And not just a little, a lot! The kids were out of school today for a teacher workday so the mid-day snowfall was a wonderful treat. We haven't seen enough snow to make a snowman in a very long time. Today, there was plenty and it's still falling.
Everyone's doing well. Kylie's been asked to test for the TAG program in March (Talented and Gifted). Her gymnastics teacher asked her to be in a special class next session so that she can start learning things geared toward being on the Team. I mean, seriously? Cancer did not break this little girl! God has been so good to her and our family as a whole!
Don't forget to go to www.jogforacause.com and register to run in the upcoming race. Even if you can't run, it's only $20 and it goes to a great cause! Or, you can go to my personal fundraising page www.active.com/donate/jogforacause/raquelbarry and donate any amount there!
Have a blessed week! Please continue to give thanks for Kylie's healing and pray for her continued good health. Please also pray for the health of all children with cancer and a cure for ALL cancers!
love,
Raquel
Tuesday, January 26, 2010 6:32 PM CST
Once again, time flies and I realize I haven't posted an update. We had a wonderful Christmas and New Years and life is nothing but wonderful. Kylie is excelling in every way. I received her latest report card last week along with two letters letting me know that she's being placed in AP English and AP Math. Those are even bigger deals to us when we have been told that there could be some late side effects in her mental capabilities due to the chemo. Kylie's healing has been nothing short of a miracle in every way. When we were in NY we met with a new Nurse Practitioner in the Survivor Clinic and she asked if Kylie had hearing aids. When we told her she had no hearing problems her first response was "how did she manage that?!!" God is so good! He decided not to just heal Kylie, but he went above and beyond!
Kylie is enjoying her last few weeks of cheerleading. She had a great first experience. She's still loving dance and gymnastics too. I know one day she'll have to make a choice. So far, it hasn't been too much of a problem. Christian is starting baseball this spring and he cannot wait! Actually it's me that cannot wait. The mere thought of seeing him in a baseball uniform brings absolute euphoria to me! He's such a sweet loving boy.
I had a great moment with Kylie last night. Drew's traveling and she gets to sleep with me when he's out of town. We were lying in bed together with the lights out and she said "Mommy, the kids on the bus were talking about their friends. It told them how Ryan (our neighbor's daughter) is my best friend because I've known her since i was a baby. But then I told them 'no, actually my Mom's my best friend.'" I was so touched that I almost cried right then and there.
I've said it many times, but I am absolutely the luckiest woman alive. I am so thankful for my wonderful husband and my two incredible children. God has been so good to me and I have no idea what I've done to deserve it. All I can do is say thank you.
Lastly, the 7th Annual Jog for a Cause is coming up on March 13th. Please go to www.jogforacause.com to register to run. Also, we've begun personal fundraising pages this year in hopes of raising even more money! My fundraising page is www.active.com/donate/jogforacause/raquelbarry. I would really appreciate any donation you could make and if you would pass the link along to your friends. Any amount helps! If you want to help even more, you can also go to www.active.com/donate/jogforacause and create your own fundraising page and send it all of your friends and family!
Please continue to pray for Kylie, the other children with cancer and a cure for ALL cancers.
love,
Raquel
Friday, December 18, 2009 2:12 PM CST
A promise is a promise. I promised I would put up a new picture of Kylie this week and I finally did. This is from our annual Tea with Santa at the Ritz Carlton. We've been doing it for 4 years now and it's become an event we both look forward to every year. I'm already envisioning us still doing it when she's an adult and we can bring her children.
I received a call from the Long Term Follow Up Care doctors yesterday saying that all the rest of Kylie's tests came back perfectly normal. We're still waiting to get the Urine Collection tests back. That's the big one that shows markers if there's any evidence of Neuroblastoma. We know it will be normal as well, but we'd appreciate your prayers as we wait.
Kylie has her Nutcracker performances this weekend. She's in the older group this year so she has to perform 4 times! It's going to be a lot for a 6 year old, but I know she can handle it. I'm very much looking forward to this Christmas break. It's been a crazy, busy time lately and I'm ready for some family time.
We hope that you all have a very Merry Christmas. Please take a moment to remember and thank God for sending us His Son as you celebrate Christmas with your family. What a wonderful gift!
Please continue to pray for Kylie's health, the health of all children with cancer and a cure for ALL cancers!
Have a blessed week and Christmas!
love,
Raquel
Sunday, December 13, 2009 4:43 PM CST
I always get so amazed when I realize how long it's been since I updated. I guess it's been at least a month now. I'm sitting in a hotel room in New York with Kylie. We've been here since Friday. She completed her urine collection on Friday and we have a doctor appointment with her Long Term Follow up Care doctor tomorrow morning, as well as all necessary blood work. As usual, please pray for perfect test results. Also please pray that she has no side effects from any of the treatment she received. They won't be repeating the ECHO of her heart until the next 6 month visit, but, as I mentioned in another post, the doctors said that the last test showed a change from her previous tests. I continue to pray that the test was incorrect or that the state that her heart is in now doesn't deteriorate any further. Please pray with us for her.
My sister, Rhonda, and her daughter, Kelly, met us again in New York. We've found a great way of making what could be a very stressful trip into something we look forward to. We try to take in a show each time we're here. This time we were able to get some last minute tickets to the Rockettes and gave it to Kylie as part of her Christmas present. She had a great time and said it's her favorite show so far (we've seen The Lion King and Wicked). We had tea at Alice's Tea Cup today and made our semi-annual trip to the Times Square Toys R Us. We try to not to over indulge Kylie because of her past illness, but we do try to give her a sort of reward for bravely facing the needles and doctors each time we come here.
Drew and Christian had a great boys' weekend. They even took in a pro hockey game. Hard for me to imagine my "baby" going to a hockey game with his dad. Time sure flies. Kylie's sure we need to have another baby. Mommy's not so sure.
I will let everyone know Kylie's test results as soon as I receive them. I also promise to update the picture when I return home this week so please check back!
Thank you for your prayers. It means so much to us. I ask that you continue to pray for Kylie's health, the health of all children with cancer and a cure for all cancers!
Have a blessed week!
love,
Raquel
Friday, November 6, 2009 7:42 AM CST
As you can see, Kylie and Christian were Dorothy and Batman this year for Halloween. Christian originally wanted to be a policeman. We ordered the costume and it was huge on him. So he settled for Batman. Kylie knew she wanted to be Dorothy from day 1.
Drew has been invited to play in the Rally Foundation's Celebrity Softball Game on Friday, November 13th. It's being held at the Georgia Tech softball field at 7:35 p.m. and is preceded by a 7 p.m. home-run derby. A few of the Braves players will be playing as well, including Brian McCann and Chipper Jones. Kids 12 and younger get in free and it's $5 for students and $10 for adults. All proceeds go to benefit Brian McCann's Rally Foundation which supports children's cancer research. If any of you are looking for something fun to do next Friday night, please come by. Kylie will be a bat girl!
We've already scheduled our next trip to New York. We leave December 11th. She will have her blood and urine tests done with the Neuroblastoma team and then we will have a day meeting with the Long Term Follow Up Clinic doctors. Please start praying for great results in all areas and a safe trip!
Lastly, we're gearing up for our 7th annual Jog for a Cause race which will be held on March 13, 2010. If anyone is interested in having their company sponsor or sponsoring as an individual, please let me know. We're also considering having teams this year so that people can run in support of a loved one. I'm so thrilled on how well this race has done over the years and I'm very proud to be a part of it.
Have a blessed day, week, month (however long it takes me to update again!).
love,
Raquel
Friday, October 9, 2009 3:09 PM CDT
Yet another month or more has gone by since I've last updated. Please know that it's a good sign! Everything is so normal for us that I don't have much to report.
Kylie's doing great in school. I met with her teacher for a parent/teacher conference last week and she had nothing but praises for Kylie. She said that Kylie is reading way ahead of her level (off the grading charts actually) and that she's excelling in math as well. She said she's actually having to slow Kylie down because the other kids can't keep up! She believes 100 hat Kylie should be in a special program and she's hoping that after her CRCT tests are over that her scores can get her into them.
Kylie's still loving dance and gymnastics and has even entered into a new arena: cheerleading! She's cheering for a christian basketball program that begins in November. She's really excited and can't wait to get her uniform.
I took Kylie to our local oncologist at Scottish Rite a few weeks ago. Unfortunately her blood pressure was once again high. It's becoming a pattern which is what they look for when they decide to look for a problem. Dr. Rapkin said he'd bring it up to the team but that he thinks they'll still just continue to follow her as long as all of her other tests continue to come back normal.
Christian is doing great too. He loves being back in school and is doing very well. We can't wait to get him into sports. His energy level is so high that he needs the outlet. Plus, I'm sure he probably gets tired of us always taking Kylie to activities and not him!
We went to California a few weeks ago to celebrate Kylie's great-grandmother's (Doris) 90th birthday! Drew's mother threw a wonderful party and Doris looked like a queen. She's certainly not your average 90 year old. She doesn't look it or act it. Kylie and Christian are lucky to have such great genes in their blood!
Thank you for checking in on Kylie. Please continue to pray for her good health and please pray that her blood pressure goes back down to normal (and stays that way!). Also please pray for the health of the other children with cancer and a cure for ALL cancers!!
Have a blessed day!
love,
Raquel
Tuesday, August 4, 2009 4:24 PM CDT
I've been hearing it from people for not updating in a while. I can't believe it's been since late June since I updated! Even my own brother in law, who of course knows everything going on in Kylie's life, gave me "heck".
It's been a very busy summer. The kids have taken part in several camps (gymnastics, vacation bible school, cheerleading and swim lessons) and I've been working more than I expected to (which is doubly hard with the kids here!). Of course we had our trip to New York in June for Kylie's tests, then we took a family trip to a water park in Tennessee and then we did our annual "girls trip" (me, Kylie, my sister Rhonda and her daughter Kelly) to the beach in Florida. Busy, busy, busy! I can't believe that school already starts on Monday! Christian will be sad when Kylie goes to school because he doesn't start until after Labor Day.
I did hear back from Kylie's long term follow up care doctor who told me that her ECHO did show some changes in her heart from the last one that she had 1.5 to 2 years prior. The hope is that it will not change any more, which is a possibility. If it continues to show changes she will need to be monitored by a cardiologist. They told me some long name that would be the "worst case scenario" and said if it developed into that she would need medication for the rest of her life. Drew and I said that although we pray it doesn't come to that, we certainly could deal with that over all of the other side effects that could happen from the chemotherapy and radiation.
Lastly, on July 21st, we had to put my sweet loving dog, Maggie, to sleep. I say "my" because she was my first child, often times my very best friend and a wonderful companion for 14 years. The entire family loved her of course, but it affected me the worst. I'm glad she's no longer suffering, but it still hurts to know she's gone.
I am posting a picture of Kylie and Christian from the annual 4th of July parade. You may remember that I posted one last year of them in the same pose. Some said it was their favorite picture. I thought I'd "recreate it" a year later so you can see the changes in them.
Have a blessed week and please don't forget to pray for Kylie's continued good health, the healing of all children with cancer and a cure for ALL cancers.
love,
Raquel
Sunday, June 28, 2009 6:53 AM CDT
Once again we're praising God on this beautiful day for keeping Kylie cancer free! She had an MRI of the liver on Thursday,along with several blood and urine tests. Friday consisted of an EKG, an ECHO and a visit with her long term follow up care doctor.
We then met the Neuroblastoma team doctors and the confirmed the final report that Kylie's MRI was completeley normal, only showing some scar tissue in her abomen from the major surgery she had in 2005. The people who performed the heart tests both told us they looked completely normal, but that they'd have to compare them to previous tests she's had to make sure there were no changes. And, as usual, it will be another week or 10 days before the urine test results will be back.
Then, it was at the end of our day at the hospital that was the most interest. They informed us that this will probably be the last scan Kylie receives!! Our favorite nurse (and now my friend) said that when they scheduled this week's test, the doctor specifically said "let's do just one more". This means that unless they decide otherwise and barring any problems Kylie could have that would cause them suspician, that she will never have another scan and only have blood and urine tests! Kylie was so happy at the thought of not needing any more IV's in her arms and she high fived me right away. I was more than excited because I knew that meant that the doctors felt comfortable with her having a low enough chance of relapse at this point that they could stop doing the scans. I can't tell you what a huge weight that lifted off my shoulders. Of couse, like Drew said, maybe we'll want her scaned, to ease our own minds, but the point is keeping the radition off their tiny bodies if it's not necessary. We'll have to keep our trust in God more than ever now.
Thank you for all of your prayers. We fly home later this morning and I can't wait to see my husband and my little red headed monster.
Have a blessed week. I pray that you too can feel the joy that I have in my heart right now! Please thank God with us, please continue to pray for Kylie's good health, the health of all others with cancer and a cure for ALL cancers.
love,
Raquel
Thursday, June 25, 2009 6:26 AM CDT
We're leaving for New York this morning. Kylie has scans and tests this afternoon, as well as more extensive long term follow up care tests tomorrow.
Please pray for safe travels and, of course, clear scans and perfect test results.
I'll update on Monday with any results I have by then.
Thanks for your prayers!
love,
Raquel
Saturday, May 30, 2009 1:50 PM CDT
As you can see from the picture above, Kylie had her end of the year dance recital a few weeks ago. She did both jazz and ballet. The theme of the show was the Wizard of Oz. She did a fabulous job. Her teacher told me that Kylie knew the dance better than the instructors. She has a great memory, just like her Daddy.
School has been out for a week now. The kids have been wonderful while I've been working. I was concerned how that would go, but we've been able to manage increments of time with both of them being occupied with toys and games while I can get some work done. Then, if the weather's nice, we try to hit the pool in the late afternoon as a reward. Okay, there may be some popsicles and ice cream used as rewards too but, hey, it's summer!
Kylie has an appointment with her local oncologist on June 18th, then we leave for New York on July 25th for scans and lots and lots of tests. This is one of the major ones with extensive heart tests, bloodwork, urine, long term follow up care, etc. I read an article in the Memorial Sloan Kettering report recently that said that 3/4 of the children that survive childhood cancer have extensive and often fatal long term side effects from the medications and radiation they were given which shows up 20-30 years after therapy. In pediatric cases like Kylie, that means when she's only 22 or 32 years old! I felt nauseous after reading that. I prayed for Kylie the entire time she was receiving the medications and therapy for God to protect her body from any damage so I have to feel like she's going to be fine. Besides, He hasn't let us down yet.
Please pray for Kylie's upcoming scans and tests to all be completely normal and for her long term health to be perfect! Please also pray for all children with cancer and a cure for ALL cancers!!
Have a blessed week!
love,
Raquel
Wednesday, May 13, 2009 6:07 PM CDT
Mother's Day has come and gone and I'm reminded again how absolutely blessed I am to be the mother of my two wonderful children. My day was uneventful, yet full of love and acknowledgment from not only Kylie and Christian, but from my wonderful husband. I hope that on Mother's Day every husband tells their wife that they're the best mother ever, but somehow Drew has a way of making me believe that it's true. Christian drew a picture of me at church and wore his "Mommy's Boy" shirt, Kylie made me a card and picked me flowers from the yard and Drew gave me the sweetest card, bought me flowers and took me and the kids to my favorite dinner spot. To top that, the kids were perfect angels at dinner. Very unusual, so I knew it was just an extra special Mother's Day present to me!
Kylie lost her first tooth about 10 days ago. She'd be very upset with me if I didn't let everyone know that! The tooth fairy came and was kind enough to not only leave Kylie money, but she also left me a special box so that I could keep Kylie's tooth. Somehow I bet I would have thought that was creepy when I was younger, but now that I have kids I can't imagine tossing it! I'll stick it in a box with her belly button stub! lol!
Just a little over a month until Kylie's scans in NY (we leave June 25th). Please continue to pray for clear scans and perfect blood and urine tests. Once again, my sister Rhonda and her daughter are going to meet up with us for a "girls' weekend" in the city. We're very much looking forward to it!
Have a blessed week! Please continue to pray for Kylie, all children with cancer and a cure for ALL cancers!
love,
Raquel
Wednesday, April 22, 2009 4:18 PM CDT
We want to take a moment and Praise God and thank Him for Kylie being four years cancer free today!!!!!
Thanks to all of you for your support and prayers over the years!
Please don't stop praying!
love,
Raquel
Thursday, March 26, 2009 8:21 PM CDT
I've been trying, unsuccessfully, for the past week to add a picture from Kylie's birthday. I have no idea why I can't get it to appear this time (hence the red "X" in the box above - unless Heather's fixed it for me, in which you may now be seeing the picture!!).
First, the Jog for a Cause race was held on March 14th. The weather was, as usual, horrible. The people were, as usual, amazing! We had over 900 runners this year! We're so close to making our goal of 1,000 runners! Even in the rain and cold we had almost 150 people sign up on race day, plus only 86 pre-registered runners didn't show up due to the weather. I'm telling you, God has looked down on our race. We've complained year after year about the weather and how we just can't get a break, but I think He's trying to tell us that rain or shine, HE'S in charge! Thank you to my sister Natie, Bobbie, Darrell Hogan and all of the other selfless volunteers who braved the cold and wet weather. You are amazing and I'm blessed to know all of you!
My mother in law (Kylie and Christian's "Nonni") came all the way from California for the race (and for Kylie's birthday!). She placed 2nd in her age group! The attorney I used to work for placed 3rd in his age group and another attorney I used to work with (who has been a gracious sponsor for 3 years and running) sent a friend who finnished 9th overall. I almost felt like I had it rigged! Once again I had strangers e-mailing me on our race website telling me how amazing the race was. I even had a couple drive all the way from Alabama to run and said they'd definitely be back again next year!
Now, onto Princess's birthday. She turned 6 on the 18th. We had a small luncheon for her at the American Girl Doll Store Bistro on the Sunday after the race. We decided not to have a party this year and Kylie was very supportive of that. She invited her best friend, Ryan, and Ryan's sisters came too. We had a great time just being girly. She was, of course, spoiled all weekend by her Nonni, but that could happen any time of year! In fact, so was Christian!
We've already started planning our next trip to NY which will be in June. It's never too early to start praying. So if you get a minute, please say a quick prayer for Kylie's continued good health, the health of all children with cancer and a cure for ALL cancers!
We are blessed!
love,
Raquel
Thursday, March 5, 2009 11:54 AM CST
My last entry told you how we had temperatures of 70+ degrees. Then last weekend we had our first snow "storm" in a few years. The kids even enjoyed a day off of school! It didn't stick very much were we lived, but it was beautiful coming down.
And, to make it more interesting, it's going to be 75 this weekend! Of course, our main goal is to have warm weather the following weekend, which is the Jog for a Cause race (March 14th). If you haven't done so already, please register to run/walk/crawl : ) Or, just register as a phantom runner to support the cause and/or make a donation. Go to www.jogforacause.com.
Have a wonderful, blessed week! Please continue to pray for Kylie's good health, the health of all children with cancer and a cure for ALL cancers!!
love,
Raquel
Monday, February 9, 2009 10:20 AM CST
It felt like spring this past weekend here in Atlanta. It was close to 70 degrees! Drew finally had a weekend off for the first time in over a month so we decided to spend a day together as family and we went to the Georgia Aquarium. All day Christian kept saying "are we going to the Georgia Aquarium?" and it sounded like he was saying "are we going to George Clooney?" He makes me laugh so hard with the words he says. He loves this lobster salad from Costco and he calls it "hamster salad". It's kind of gross to hear him say he wants to eat some Hamster salad for lunch. I try to make sure he doesn't say it in front of strangers!
Kylie's doing great. Other than a cold for her and Christian, she's been in perfect health. She's reading better than ever and her handwriting has improved tremendously.
Drew's doing his ESPNU work (look for him on weekends if you have the channel!) so he's gone a lot. He misses us and we miss him, but he does enjoy being around the game.
I started working from home on December 1st and it's keeping me very busy, which is why I haven't been able to update the site as much! Thankfully I'm able to do my job and do my most important job (being a mom!) at the same time. I'm so blessed!
Don't forget to register for the Jog for a Cause! It's coming up on March 14th! Remember, if you live far away, won't be in town, or just don't run, you can always register as a "phantom" runner and still be contributing to the wonderful cause! Go to www.jogforacause.com for details!
Have a wonderful day! Please continue to pray for Kylie's good health, the health of other childen with cancer and a cure for ALL cancers!!!!
love,
Raquel
Thursday, January 15, 2009 1:13 PM CST
I can't believe it's been almost a month since I updated the site. It's been a busy last month with Christmas, Kylie's Nutrcracker performances, New Years and then Christian's birthday on January 5th. I was able to spend 2 1/2 weeks with the kids while they were out of school. Drew was able to spend a lot of time at home during the holidays too so it was great family time for us.
Christian celebrated his 3rd birthday with a nice blue Batman cake. I can't believe he's three already! He's still as crazy as ever. He started his first SportsTyke's class at our rec center on Tuesday. The instructor (whom he'd never met before) bent over to pick up some basketballs and Christian ran up behind her and started spanking her on the bottom! Not once, but like 3-4 times. If I could have melted under my bleacher seat I would have.
Other than pink eye, the kids have been healthy. We're enjoying the new year and gearing up for the 2009 Jog for a Cause in March (www.jogforacause.com). Please stop by the site and register to run. You can register as a runner, walker or even a phantom runner where you are basically making a donation. We need your support!
Please continue to pray for Kylie, all children with cancer and a cure for ALL cancers. Have a blessed day!
Raquel
Saturday, December 20, 2008 8:13 AM CST
We received a call from Sloan Kettering letting us know that Kylie's urine markers are completely within the normal range! She had one questionable marker in her blood, however, it was noted by the lab that there appeared to be something wrong with the sample. They said if there would have been any problems with any of the other tests they would have the blood redrawn and retested, but they are confident it was just an error. Her long term follow up care doctor called and said that all of her other tests (calcium levels and other things they look for) are also normal! For some reason they never did the EKG test so I guess they'll do that next go round.
Thank you again for all of your prayers! We are so thankful for each and every one of them. We wish you and your families a very Merry Christmas! Celebrate the birth of our Savior!
love,
Raquel
Wednesday, December 10, 2008 9:55 PM CST
We received the call this afternoon from Dr. Kushner's office at MSKCC letting us know that the final report on Kylie's scan was in and, praise God, everything was clear! We're awaiting the final blood and urine test results which probably won't be in until Friday at the earliest.
Of course, this is the best Christmas gift Drew and I could ever hope for - this Christmas and every Christmas. We are blessed in ways we can't even express.
Thank you for your prayers. God continues to be faithful to us.
Have a wonderful, blessed day!
love,
Raquel
Thursday, December 4, 2008 6:50 PM CST
Thanksgiving was wonderful - we have a lot to be thankful for! We had a houseful of family and enjoyed (almost) every minute of it! My sister's family and my family got to spend the week together and we even had a pseudo girls night out (but with our husbands!) with my little sister too!
Kylie and I leave for New York on Sunday. We ask for your prayers for a safe trip and for a clear scan, normal blood and urine tests and a normal EKG. We know the doctors will be amazed as usual at how much she's grown. We just can't wait to get the good news that she's clear!
I'll report back on Tuesday, or as soon as I know the results.
Have a blessed day!
love,
Raquel
Monday, November 17, 2008 12:29 AM CST
We've been enjoying wonderful fall weather. It's finally gotten a little colder and we can break out our coats and sweaters. It finally feels right getting ready for Thanksgiving next week. It just seems strange when the weather's so warm. My sister's coming down again with her family. We've decided to make it an annual tradition. We love to cook together. We're having a full house - 17 people. It's my favorite holiday meal to cook so I can hardly wait!
Kylie's doing great. She got over an ear infection a few weeks ago. Her and Christian were both on antibiotics for 10 days (he had a sinus infection). Three days after he got off of his he came down with an ear infection of his own. He's also wheezing so they have him on one of those nebulizers. Drew's been sick with a sinus infection of his own. Now I know what people mean by the family spreading stuff around once the kids get into school.
I have a meeting with the counsellors at Kylie's school on Wednesday to show them the results of her testing. Kylie's already getting frustrated at having to do extra work in class. She thinks of it as a punishment instead of an honor. I guess I can't blame her.
Lastly, but most importantly, please start praying for Kylie's upcoming scans. We leave for New York the first weekend of December. She has her checkup, scans and tests on December 8th. She's also having her long term follow up care doctor appointment, as well as an EKG to check her heart. Please pray for great checkups with both doctors, a clear scan, normal bloodwork, low urine markers and a normal EKG. If you have an extra second, throw in a prayer for a safe trip too!
Have a wonderful day. If I don't report back before Thanksgiving, have a blessed day. We all have many reasons to be thankful.
love,
Raquel
**The Cookies for Kids Cancer fundraiser did so well last year that they have now developed it into its own non-profit organization apart from the Band of Parents!! The cookies are now on sale at www.cookiesforkidscancer.org and proceeds benefit Neuroblastoma research!!
Thursday, October 23, 2008 9:11 AM CDT
As you can see from the new picture above, Drew and I have a diva on our hands! She's decided she wants to be a model (this week anyway) so she loves to pose everytime we get the camera out. I'm not sure where she gets it from (no comments about her mother, please!!)
We finally got Kylie's report back from the psychologist. Everything is even better than we expected. According to the report, Kylie seems to excel in most areas (and above average in others) and her IQ is in the superior range. No one seems to be surprised at this. Kylie's always been bright and I have no doubt that one day she'll be teaching me things while she's doing her homework. Drew keeps reminding me that she gets it from him. I keep reminding him to keep his opinions to himself. : ) I have a follow up appointment with the psychologist this afternoon to see where to go from here. The report says that we may need to meet with her school counsellors to check on having Kylie entered into a gifted program. I assume we'll talk about those things today. As a parent of a child who's had numerous surgeries, poison shot through her veins and radiation to her tiny body, I can't explain how good it feels to know that her body has been protected and that she's doing so well in spite of the odds. As much as Drew would like to take the credit, we both know it's only by the hands of God.
Please thank God with us for these wonderful test results. Please pray for Kylie's continued good health, the health of all children with cancer and a cure for ALL cancers.
Have a blessed day!
love,
Raquel
Tuesday, October 7, 2008 8:17 AM CDT
Today's the four year anniversary of Kylie's diagnosis. It's hard to believe it's been four years since the nightmare began, although it also seems like a lifetime ago. We forgot about the date last year and I probably wouldn't have remembered this year either if it weren't for trying to remember after forgetting last year! I am so thankful that we're able to forget the date of diagnosis and instead remember and celebrate the date when she was declared cancer free! That's a blessing from God in itself.
Have a blessed day and please continue to pray for Kylie's good health, the health of all children with cancer and a cure for ALL cancers.
love,
Raquel
Wednesday, September 24, 2008 10:56 AM CDT
Kylie had an appointment with our local oncologist at Scottish Rite a week ago Monday. Once again, he commented on how wonderful and healthy she looks. They did the usual finger stick and abdominal exam which were all non-eventful. He told me that her lymphnodes were a little swollen and asked me if she had a cold or anything. She always seems to have swollen lymphnodes so I wasn't concerned anyway. Plus, the doctors in NY have said they think she may be one of those patients who seem to always have enlarged lymphnodes after treatment. Well, that night Kylie started getting congested and coughing. It's so nice to be the parent of a normal child now and sincerely feel and know in your heart that swollen lymphnodes and belly aches are nothing but colds and viruses. It has to be an answer to prayer because the calmness we feel everytime one of these little issues comes up is amazing.
Still no word on the neuro testing she had done 2 1/2 weeks ago.
Kylie auditioned on Saturday for the yearly Nutcracker program through her dance school. Although we're 99.9% sure that every child makes it at this age, we're still happy as can be to know that she'll be in it again this year. And, once again, how appropriate that she'll be an "Angel". I'll see if I can scan last year's picture and attach it above. She was precious.
I told you about a little boy named Cole who was diagnosed with cancer at the end of July. We found out he died on Friday, not even two months after diagnosis. (www.caringbridge.org/visit/coleruotsala). It sickens us to hear about another casualty of this horrible disease. Please continue to pray for a cure. Prayer works! Please also continue to pray for Kylie's good health and the health of all children with cancer.
Have a blessed week.
Raquel
Saturday, September 13, 2008 1:08 PM CDT
I've had several people e-mail to ask me how Kylie's neurocognitive tests went so it dawned on me that I should probably update the site. We haven't received any results back as of yet. We were told it would be about 3 weeks until we received a full report in the mail. Kylie was tested for 3 hours, alone in a room with just her and the person performing the tests. I met alone with the psychologist and then Kylie met with him alone. The only information I received while I was there was that he was concerned about the frequency of her night terrors. He said that typically children have either outgrown them altogether by now or have them infrequently. Kylie continues to have them on a regular basis. He wants to see if we can get to the bottom of what's causing them so she can get a better night's sleep. Thankfully, the terrors usually happy within 2 hours of her going to bed so they're not waking us all up during the night.
Kylie's loving school and so is Christian. He's been in school for a total of 5 mornings and has been in a timeout two of those days. No surprise there! He's also managed to keep a completely dry pull up every day that he's been at school so we're working our way to being potty trained. That's one expense I could do without - diapers!
Have a wonderful, blessed week ahead. Please continue to pray for Kylie's good health, the healing of all children with cancer and a cure for ALL cancers.
love,
Raquel
Friday, September 5, 2008 7:35 AM CDT
Kylie is scheduled for her neurocognitive testing on Tuesday. Her long term follow up care doctors in New York asked us to have this done. Apparently it's standard procedure for a child who's received chemo at her age to make sure there's no problems. We're not sure if this will be used as a baseline for any future problems or if this test is used to find any current problems. Regardless, we ask that you please pray that her tests on Tuesday show no problems and that she continues to show no negative side effects from any of the treatment she received.
We spoke to the doctors in NY and we're already scheduling her next set of scans/tests. We'll probably be going the week before Thanksgiving. She's due the first week in December, but the hospital is throwing a party for the survivors and those currently in treatment the weekend before Thanksgiving and we'd love to be able to take part in that to celebrate Kylie's 3 1/2 years of being cancer free. She definitely IS a survivor. Praise God!
On a separate note, I wanted to introduce you all to a child that, although I've never met, I've become very attached to. He desperately needs our prayers. The doctors originally thought he had neuroblastoma too and someone asked me to lend my support. Unfortunately, his cancer diagnosis was even worse than Neuroblastoma. Could you please visit his site and pray for him and his family? They need and have asked for all the prayers they can get. Please go to http://www.caringbridge.org/visit/coleruotsala to find out about this special little boy.
Have a blessed weekend. Thank you for your prayers. Please continue to pray for Kylie's good health, the health of all children with cancer and a cure for ALL cancers.
love,
Raquel
Thursday, August 21, 2008 6:44 PM CDT
The above picture may be the best present I've ever received for any of my 38 birthdays. Kylie made it at school for me today. She knows how to spell "I love you Mommy" but she sounded out the "Happy Birthday to you" part on her own. Can I tell you the tears that flowed when I saw it and the tears that seem to be uncontrollably streaming down my face as I type this? I don't know if it's because it's from her or if it's just one of those special things that you love about being a mom. Regardless, I know it's something that I will keep for the rest of my life.
The rest of my birthday was interesting. Other than Kylie's gift, I received special things from the rest of the family as well. My two (thirteen year old) dogs left me one pile of doggie doo and two puddles of pee pee. That was very sweet of them. Needless to say, they are not invited to the rest of my birthday festivities. I also received two special gifts from mother nature: two zits. She seemed to have a wonderful sense of humor by lining them up perfectly in a straight line from forehead to chin in dot to dot fashion. All of that before 6:30 a.m. However, my usually comatose husband was able to say "Happy Birthday Honey" within seconds of the alarm going off this morning. Then Kylie skipped to me after she came downstairs wishing me happy birthday. Then Christian (albeit after Drew's instructions) gave me a huge snaggle toothed grin and said "Happy Birthday" after he got up. Then, to top it all off, I walked outside to the bus stop with Kylie and had 10 kids and 4 adults singing happy birthday to me.
Moral of the story: Sometimes life can give you some piles of poop. But in the long run, life can give you the greatest gifts of all.
Happy birthday to me! It was wonderful!
Have a blessed weekend!
love,
Raquel
Tuesday, August 19, 2008 12:19 AM CDT
Kylie had a great first week of school. I thought she'd be exhausted every night but she was still full of energy. She told me yesterday that she wanted me to set her alarm clock a little earlier so she could get up and spend more time with me in the mornings. Can you just hear my heart melting?
I'm getting to spend more one-on-one time with Christian. He's such a sweet little boy. We went grocery shopping together yesterday and he must have called me back to the shopping cart 5 times during the trip to give me giant hugs, complete with back pats. His "L's" are like "W's" so he says "Wuv ooo Mommy" and he calls Kylie "Kywee".
God has blessed me with the two best children He could have possibly given me. I'm so thankful for them both.
Please pray for Kylie's continued good health, the health of all children with cancer and a cure for ALL cancers.
Have a blessed day!
Raquel
Tuesday, August 12, 2008 7:32 AM CDT
Although I knew this day was coming, I wasn't prepared for it: Monday was Kylie's first day of kindergarten. She held up much better than I did. She was so excited. She even woke up today (day 2) and was fully dressed and downstairs before her alarm went off!
Above is a picture of Kylie and her friends, Ryan and Olivia, who also started kindergarten yesterday.
Have a blessed day!
Raquel
Monday, July 28, 2008 9:45 AM CDT
I haven't posted in a while because we've been at the BEACH! I met my sister Rhonda down in Florida for our now annual beach trip! Rhonda and Kelly flew down to Florida and Kylie and I drove. It was the first time I've ever driven that far without another adult in the car, but Kylie had a great drive both ways. I don't think she said "how much longer do we have to go?" more than twice (I was expecting 50 times each way).
We had a great week. We rode go-carts, went to a water park and hit the pool and beach daily. The only downside (besides it going by so quickly) was the storm which was moving into Texas affected our waters. Therefore, they actually had double red flags up starting Wednesday, which means we were only were able to get in the beach water Sunday through Tuesday. The jelly fish came in on Thursday, which means our swimming with the dolphins trip had to be cancelled. The girls thought the jellyfish were cool to look at, but certainly didn't want to swim with them!
My wonderful mother-in-law flew from California and took care of Christian (and Drew) while we were gone. It was great being able to relax a little more, especially around water, but I sure missed my little "pumpkin head". He grew a foot and was talking like a 5th grader by the time I got home. Okay, maybe not, but he really did look different! I cried because I missed him so much and he acted like I had just stepped in from the other room and had only been gone for 2 minutes. I'm sure he was crying inside....
I'm posting a picture above of all the "girls". I'll post more pics soon.
Please continue to pray for Kylie, the health of all children with cancer and a cure for ALL cancers.
Have a blessed week!
love,
Raquel
Thursday, July 10, 2008 3:36 PM CDT
I forgot to mention in my last post that Kylie injured her finger two weeks ago. One of her friends accidentally closed their car trunk on Kylie's hand. I was immediately comforted by the lack of blood, but she was in pain nonetheless. She was up all night and we took her to urgent care for x-rays and thankfully nothing was broken. They burnt a hole through one of the fingernails to release the pressure of the blood built up underneath the nail. It definitely brought her relief. A few days ago I noticed Kylie's finger still didn't look right and it began to have a foul smell. I talked to urgent care and then her pediatrician about 10 pm that night and she told me take her in the very next morning. After seeing Kylie, the peditrician said she needed to be seen ASAP by a hand specialist. We got her in that afternoon. As expected, the finger was infected. They scheduled her the very next day (yesterday) for surgery on the finger to remove any infection. I sent out the prayer squad immediately. And, our faithful God once again took care of Kylie. The doctor said that he was surprised to see when he removed the nail that her skin had already began the healing process on it's own from the infection. He also said that the finger was so badly damaged underneath that he thought for sure that the first x-ray was wrong and that the finger was in fact broken. So, he took another x-ray while she was in surgery. Sure enough, no break! He said she was a very lucky girl because in most cases with that damage it would have been broken.
She was sent home with stitches and instructions to keep her finger dry until we see him again on Tuesday for a follow-up appointment. She spent the afternoon throwing up from the anesthesia, but she was rewarded with a trip to Brusters after dinner. Ice cream makes everything better in the Barry household.
For those of you who prayed for Kylie, thank you. It worked! Please pray that the infection continues to heal and that the new incision heals with no new infection.
Please also pray for Kylie's good health, the health of all kids with cancer and a cure for ALL cancers.
love,
Raquel
Saturday, July 5, 2008 2:46 PM CDT
Finally, after many requests, a picture that has both of my children! I can't believe how difficult it is to get a picture with both kids. Either one turns their head, closes their eyes or, as the case is most of the time, Christian starts screaming because Kylie tries to get up next to him for the picture. Brotherly love!
The picture is from the yearly 4th of July parade we have in our neighborhood. Our local fire station is so good to us. They show up every year and lead the children in the parade complete with sirens and popsicles. Christian was in heaven sitting in the front seat of the truck. He's definitely 100 percent boy.
I ran in the Peachtree Road Race yesterday. After some miscommunication with my friends, I ended up driving down alone. As most of you know, there are 55,000 runners in the race every year and that's not even including the thousands of spectators. I was knee-deep in spandex and fanny packs. I think the people watching was one of the best parts. I loved seeing the runners with shirts on that said "Survivor" or "Running in memory of...". To run for a specific purpose would make the run so much more worth while. I wore a bracelet that Kylie made at Vacation Bible School. Everytime I was tired or cranky, I rubbed the charms and felt a sense of relief knowing I was coming home to her and the rest of my family. I had a moment of clarity while running. Instead of wanting to just finish the race, all I kept thinking of was how crossing the finish line made me that much closer to being with them and how there's no place I'd rather be. I felt like Dorothy from the Wizard of Oz, but with running shoes and sweaty socks. There's no place like home...there's no place like home....
love,
Raquel
Sunday, June 22, 2008 1:24 PM CDT
Nothing much new going on here. Kylie enjoyed her first week long, full day camp at Camp All American at Perimeter Church. She was exhausted every single day. I had to start putting her to bed at 7 pm just so she'd wake up by herself in time to leave the next morning to start all over again. Last week she attended Vacation Bible School at her old preschool. She really loved it.
Drew flew to California this weekend to play in a golf tournament in memory of one of his friends, Matt Greene, who passed away unexpectedly last year. Matt and his wife, Monica, were always so supportive of our family throughout Kylie's illness. Unfortunately, he left behind two young children and the tournament was held to help with their education.
While Drew was away, my sister, Rhonda, flew down to spend time with the kids and I. My little sister, Renata, joined us on Saturday and we had a mini-reunion. We had a great time.
Please pray for one of our NB friends, Caroline, who's having scans on the 24th. She had some suspicious spots during her last scans, but the doctors are hoping it wasn't related to Neuroblastoma. You can check on her at www.caringbridge.org/ga/carolinejohnson. She comes from a loving christian family and I'm sure they'd appreciate the extra prayers.
Have a wonderful, blessed week. Please continue to pray for Kylie's health, the health of all children with cancer and a cure for all cancers.
love,
Raquel
Saturday, June 7, 2008 1:44 PM CDT
Just wanted to update my last message to let you know that my favorite nurse practioner from New York called me last night and informed me that Kylie's urine markers were both within the normal range!! Once again, thank you God!
love,
Raquel
Tuesday, June 3, 2008 8:06 AM CDT
First and foremost, praise God for a CLEAR SCAN!!! Drew gave me the news on the drive home last night. Dr. Kushner's office had called as we were flying home from New York and told Drew. After a horribly bumpy flight, it was certainly the one thing that could put a huge smile on my face! Kylie also had normal bloodwork. Dr. Kushner said that at this point when they see normal blood counts it's not just a trivial thing. Now is when secondary cancers (mainly Leukemia) come into play. He said that her normal blood counts made him very happy. Her urine tests won't be back for a week or so so please continue to pray for normal markers.
They had to measure her height three times because they couldn't believe how much she's grown. She saw the long term follow up care doctor and they thought she was doing great as well. They said now is the time to have some neurocognitive testing done (IQ) to see if they can tell at this point if anything was affected by the chemo treatment. Apparently it's very important to find these things out now before she enters "real school" in the fall. There are programs that children with childhood illnesses or diseases can qualify for due to any problems processing information or any other problems they may have developed. It gives them extra time to do testing or finish projects. Hopefully she will be fine, but as I told Drew last night, as long as she's healthy we can deal with any other problems. Please pray that she has normal test results.
I've added a new picture to the site of Kylie with her cousin Kelly. We all had a wonderful time in New York. Yes, we got to see The Lion King on Saturday! My sister Rhonda came up big and got us 4 tickets. We went to Alice's Tea Cup near Central Park on Sunday afternoon. We also visited Ground Zero and walked to the water to admire the Statue of Liberty from afar. We wanted to take a ferry over but it became too late. Kylie had a great time and looked like such a grown up pulling her new Hannah Montana luggage through the airport. I truly enjoyed the time with her. However, I must admit that I missed my little red-headed boy more than I thought possible. I think he grew 2 inches while I was gone. Okay, maybe not, but he did seem bigger! Unfortunately he developed a 102 degree temperature while I was gone, but Daddy took very good care of him.
Thanks for checking in and most of all, thank you for your prayers. Please join us in thanking God for His answer to our prayers.
Have a blessed week!
love,
Raquel
Wednesday, May 28, 2008 11:44 AM CDT
I wanted to update before we leave for NY on Friday to make sure to ask everyone to please keep Kylie in their prayers for her upcoming workup. She'll have urine tests on Friday which they use to check for certain markers. She'll have bloodwork and her scan on Monday, as well as an appointment with her long term follow up care doctor. If you remember, Kylie's last workup is the first time her urine markers were in the normal range. I was told if they're slightly elevated, which her's always have been until last time, that it's nothing to be too concerned about because certain foods can affect it. However, I prayed that those markers would be lower than ever and they were. I ask that you join me in that prayer and that the rest of her tests and scan are completely normal. Also, as mommy has a slight fear of flying, please pray that we have a safe trip!
This also brings to mind that these trips to New York wouldn't be possible without the proceeds we receive from the annual Jog for a Cause race. So thank you to all of you who sponsored and participated so that Kylie can continue to receive the best possible medical care.
My sister-in-law, Erin, is still working on getting us some tickets to see The Lion King on Broadway over the weekend. My sister and I are just as excited as the two girls are! I hope it works out, but if not we'll have a wonderful time in NY regardless.
Of course, I'll post results from the tests as soon as I get them, although I don't expect to hear anything til at least Tuesday.
Thanks for your prayers. Have a blessed week.
love,
Raquel
Monday, May 19, 2008 1:45 PM CDT
As promised, above is a new picture of Kylie from her dance recital yesterday. She did a great job and she looked beautiful!
Have a blessed week.
love,
Raquel
Wednesday, May 14, 2008 11:27 AM CDT
I had a wonderful Mother's Day. Drew made me breakfast, which is an honor in itself because my Drew is NOT a morning guy. It was our Sunday to work at the church which means we are there past the start of Christian's nap so we decided to eat lunch at home. Drew and the kids took me out to an Italian restaurant (my favorite food!) and to ice cream for dessert. Kylie made me the best card ever. She painted all over it and used Hannah Montana stickers and wrote "I love you Mommy" and "Happy Mother's Day" all by herself. One of those things that makes your heart just melt. The best part of the day was just spending time with my family without Kylie being at school or Drew being at work. No yard work. No cooking. Just family time. Plus, you get lots of extra hugs and kisses on Mother's Day so I took full advantage of it and soaked it all up.
I had one of those happy/sad moments yesterday. My little girl graduated from Pre-K. I actually held in my tears until they called her name and handed her a bible. She posed for a picture with her teachers and I couldn't help but notice how grown up she looked. My baby is going to Kindergarten. I'm such a wimp. I'm tearing up just writing this.
Kylie had her last soccer game last weekend. She scored her first goal (kind of). The coaches tried to make it as convenient as possible for a few kids on both teams who hadn't scored any goals yet this session to get their first goals. She was so excited. She has her dance recital this weekend. I love seeing her all dressed up in her costumes. I promise to post a picture if I get a good one.
Everything else is great. We leave in two weeks for our trip to New York. Please start praying for her to have clear scans, normal bloodwork and normal urine markers. Also, please pray that Kylie continues to always be cancer free, the health of all children with cancer and a cure for ALL cancers.
Have a blessed week!
love,
Raquel
Monday, April 28, 2008 12:22 AM CDT
We had a wonderful, yet very busy, weekend. Kylie had dance and soccer on Saturday and then we had some of our close friends over to celebrate Kylie's 3rd year being cancer free. I can't explain to you the joy we feel knowing that we've passed another year without cancer in our lives. Of course, it tries to remain in the back of our heads at times, but it's certainly not in the forefront of our thoughts. Everyone tells me how normal it is for us to have that lingering anxiety sometimes. I don't want that to be my normal. How normal is it for a parent to have to worry that their child's going to develop cancer again? It's not.
As we celebrated Kylie's anniversary of being cancer free, the world lost another brave child to Neuroblastoma. Austin Melgar was diagnosed a year after Kylie and he fought this horrible disease for the past 2 1/2 years. Our prayers are with his family.
Please thank God with us for Kylie's 3 cancer free years and pray for her continued good health. Please pray for Austin's family and all other children with cancer. And last, but not least, please pray for a cure.
love,
Raquel
Tuesday, April 22, 2008 12:07 AM CDT
April 22, 2005-April 22, 2008 - KYLIE IS THREE YEARS CANCER FREE!
Shout for joy to the LORD, all the earth.
Worship the LORD with gladness; come before him with joyful songs.
Know that the LORD is God. It is he who made us, and we are his; we are his people, the sheep of his pasture.
Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name.
For the LORD is good and his love endures forever; his faithfulness continues through all generations.
Psalm 100
I offer the above Psalm of thanks to God for Kylie's three glorious cancer free years. Today is a day of thanksgiving and celebration for us. There is no doubt that God gave us this miracle and we want to make sure He receives ALL the glory for His work.
love,
Raquel
Wednesday, April 16, 2008 11:42 AM CDT
I would have updated a few days ago, but the house has been hectic. Christian got the croupe while I was in Virginia and then Kylie ended up with a cold and was home from school the past few days. Add two days of 20 degree below average weather to a mom and two sick kids, it makes up for a very LOOONNNNNNNGGGGGG couple of days. We managed to catch up on the new releases from Blockbuster along with eating some homemade chicken soup and popcorn. There may have been some (a lot of) cookies consumed from Costco too. So, bottom line we made the best of it! Thankfully, Kylie seemed to sound worse than she felt, but I didn't want to risk getting any other children sick. She's back at school today. She walked up to her teachers and looked at them with a face that said "I KNOW you missed me and wondered where I was!" She was waiting for a parade or confetti or something upon her return. They were glad to see her but I never saw any confetti.
We booked our trip to NY for May. We decided it would be more cost effective if Drew and Christian stayed home. Normally we wouldn't do that because Drew wants to be there when she gets put to sleep and for any results we may get while we're there. Now she doesn't need any anesthesia and we more than likely won't get any results while we're there since we'll leave the same day as the scan. After deciding I'd go alone with Kylie, me and my sister's minds started working like mad scientists. Now a 2 day trip to NY has turned into a long weekend with my sister and her daughter. I'm so excited to be able to spend girl-time with Kylie in New York! We hope to see a musical and catch up on some sight-seeing. Believe it or not, other than walking around Times Square, we've never done much of anything else. It was hard to do much with Kylie's schedule or pain or anesthesia. Then came Christian with bottles and then naps. So, this time we can make the best of it and make it a good trip instead of a dreaded trip. I'm really looking forward to it. All Kylie keeps asking is "how many nights to I get to sleep with you?" She LOVES sleeping with Mommy, but only gets to when Daddy's out of town. Hopefully she'll enjoy other parts of the trip too!
Nothing much else to report. Please start praying for Kylie's upcoming tests in NY (clear scan, normal bloodwork and urine markers). Also, please remember to pray for all other children with cancer and a cure for ALL cancers.
Have a blessed week.
love,
Raquel
Monday, April 7, 2008 1:33 PM CDT
The kids and I made a very last minute decision to fly back to Virginia to see my sister and her family. Drew had a charity golf tournament to play in on Saturday, dinner for work on Sunday, and the Masters on Tuesday and Wednesday. With him being gone so much, my sister and I jumped at the idea of getting together again. And since it's spring break for Kylie, it was perfect timing.
I am on Cloud 9 right now. I'm having one of those times where everything in my life is perfect. I received a call today from Dr. Kushner's office in New York. They want to finalize the dates for our next trip to NY. Apparently, they only requested ONE scan! We're used to about 3 each trip. In fact, they mentioned before that they probably wouldn't even be doing this one if she had had a full tumor resection back in 2005. We'll also see the long term follow up care doctor while we're there. It just blows my mind how far we've come since October 2004.
My second praise for the day is that I received a call from Christian's GI doctor (one of our heroes who actually finally correctly diagnosed Kylie). They said that according to his latest x-ray from last week that there is no sign of his gallstones! He did mention that it's possible that they just weren't visable in the x-ray since it's not the best test but that according to what he saw, they were gone!
I can't even explain the elation I'm feeling right now. There's no doubt in my mind that God healed Kylie and now He's performed His work on Christian too.
God is SO good!
Please continue to pray for Kylie, all children with cancer and a cure for all cancers. Please also join us in thanking God for his grace on our family.
Have a blessed day!
love,
Raquel
Monday, March 31, 2008 4:41 PM CDT
Kylie had a wonderful birthday party. She had 11 of her friends for tea at a local tea room. They all were dressed up in their fancy dresses and acted like little ladies the entire time. They decorated hats to wear during the party and they also decorated teddy bear cookies. And, as you would expect, most of the icing went into their mouths instead of on the cookies. Kylie was more excited by the lipgloss on her Hannah Montana cake than the cake itself. It took all she could to wait til after she blew out the candles to rip the guitar shaped lipgloss case off the top of the cake. I'll try to get a picture up soon from the party, or at least a current picture of her.
Kylie and Christian's "Nonni" (Drew's mother) has been in town for the past few days from California. We're fortunate that she cares so much about the kids that she comes in town as often as she can. She waits on all of us hand and foot and gave Drew and I a well-needed date night on Saturday night.
Kylie almost scored her first goal on Sunday. It was very close. She was hoping to score it while her Nonni and her friends, the Briede's, were there. She did get an assist though. I think she'd feel much more comfortable on the soccer field if they'd just let her put a princess dress on and maybe some heels. She's 100 ittle girl.
Believe it or not, we've already began the process of scheduling Kylie's next set of scans in NY for June, as well as the appointment with their long term care doctor. Please start sending those prayers up for her clean scans this time and always, as well as perfect urine markers.
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
Tuesday, March 18, 2008 2:49 PM CDT
Happy Birthday to my sweet Kylie! When she was 18 months old we were faced with not knowing if she'd see her second birthday and now she's turning FIVE! Thank you God for each and every day of the past 5 years. I am such a fortunate woman for Him to bless me with her.
Me, Drew and Christian went to Kylie's preschool and brought an enormous cookie cake (since they didn't make Hannah Montana cookie cakes she had to settle for a horse...) for her and her class. She's been telling me all day "I can do anything I want today. It's my birthday." I've reminded her a few times that it doesn't work like that, but we all know that she's right. : )
We're celebrating with a tea party on Saturday with some of her friends (and a real Hannah Montana cake). I'll take lots of pictures and ask Heather to post one for me so you can see what the now five year old looks like.
In the meantime, have a blessed week! Please continue to pray for Kylie's good health, the health of all children with cancer and a cure for ALL cancers.
love,
Raquel
(a/k/a world's proudest mom)
Sunday, March 9, 2008 9:44 AM CDT
Yesterday was the 5th Annual Jog for a Cause. The weather started off horrendous: woke up to freezing temperatures, rain and wind gusts. As we were setting up our signs and papers were blowing everywhere and we had to move our tables undercover. Then the rain turned into ice! Yes, it was sleeting. It couldn't get any worse. I had prayed and prayed that it wouldn't rain and that we'd have decent weather for the race. It was upsetting that we'd have yet another year of bad weather (in March none-the-less!) for the race. Then, suddenly, the most beautiful thing happened. The rain and sleet stopped and it began snowing! Atlanta + March = snow???? Although the temperatures remained very cold (30's with a windchill in the 20's) it turned into an absolutely stunning picturesque experience! I had several runners approach me that they had never ran in the snow before and thanked me for such a wonderful race! They were thanking ME?! Wow. God didn't come through for me like I had asked (sunny warm skies) - He exceeded my expectations! I'm sure we lost some runners due to the cold, windy and rainy day, but all who participated had a wonderful (yet frigid!) experience.
A highlight of the race was getting to meet Justin Gaudineer and his father and grandfather. He was diagnosed with Neuroblastoma last summer and is the nephew of Dr. Cabrera. He reminds me so much of what Kylie looked and acted like at his age. It was nice to finally meet them in person and know this adorable child we've been praying for the past 8 months!
Thank you to my friends and family who showed up in the cold to volunteer for the race. My friend Heather came all the way from Dawsonville and was there by 6:15 am with two of her friends, Emily and Sandra (one who lives in the mountains!). Thanks to Darrell, Jennifer, my sister Natie, Bobbie and all of the nurses from Dr. Cabrera's office. Thank you to Britney Doyle who came to see Kylie and got pulled into volunteering without hesitation. I also want to thank a young man who my sister brought to volunteer as part of his community service. He stayed through every bit of the bad weather, never complaining, and didn't want to leave when he was told he could go. I hope it was a life-changing experience for him. Thank you to Dr. Cabrera for once again holding this race and including Kylie. Thank you to Tom, Gary and Bob who are on the committee with me. We could never have pulled this off without each one of them. Thank you to Denise in Dr. Cabrera's office who put in many hours in addition to her regular work schedule.
And, mostly thank YOU for all of you who came to run or visit in support of Kylie.
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
Thursday, March 6, 2008 10:19 AM CST
I'm baaaaaaaaaaaaaaaack! Yes, we finally have a new computer. We received a "first" new one, then it was broken so we had to send it back for a replacement. I'm so over computers right now, however, now I realize how lost I am without one. Especially while trying to plan the Jog for a Cause race which is this weekend.
Also, me and the kids left a week ago Wednesday to go visit my sister, Rhonda, in Virginia for 5 days. We had a great time, as usual. It's nice having a bit of freedom for one last year with Kylie not exactly being accountable for being at school everyday. In fact, she's never missed a day except for NY and now my trip to Virginia. We didn't want to come home, except it was nice to be home once we got here. We just wish we could bring my sister and her family home to Atlanta with us.
Kylie had her local oncology check up yesterday. She sees the Atlanta doctors in the 3 months in between NY trips so that she's seeing both doctors at six month intervals. All of her bloodwork came back completely normal and her check up was perfect. She grew another inch and a half. Since they don't see her but every six months now they couldn't get over how big she is.
There's still time to register for the Jog for a Cause. Go to www.jogforacause.com and preregister or show up the morning of the race to register (race day registration starts at 6:30 am and goes on until the race starts at 8 am). The 1 mile fun run begins at 9 am. Kylie, Justin and Ryan (the three charities being benefitted by the race) will all be there to start the race! We'd love to see you!
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 day!
love,
Raquel
Tuesday, February 19, 2008 8:48 PM CST
We're having some computer issues here at home. I haven't had a computer in two weeks so I haven't been able to update the journal. Everyone's healthy. Drew had a birthday on the 17th. Life's good.
On a sad note, two separate families we know from NY lost their children over the past couple of days after battling Neuroblastoma. I weep for their parents and families. It tears my heart in two to know how much they must be suffering. Please pray for them.
Please pray for Kylie's continued health, the health of all children with cancer and a cure for ALL cancers.
love,
Raquel
P.S. Please sign up for the Jog for a Cause race which will be March 8th at 8am in Alpharetta. Go to www.jogforacause.com for information and registration.
Wednesday, February 6, 2008 3:36 PM CST
Kylie quickly recovered from her ear infection, although the next night she was waking up with pain in her other ear. I didn't worry since she was already on antibiotics.
Drew's doing more ESPNU work. Unfortunately, the last two have been on our Bible study nights. I am so proud of him. Can you believe he volunteered to lead our small group Bible study this year? Of course we've had to make do without him while he's gone, but I can't get over how much he's come out of his shell spiritually in the past few years. We're so glad to be plugged back in with our group. It's amazing how much your focus changes when you get more involved in learning about God. I recommend it to everyone. It's hard to get started if you're not used to it. But once you do, you'll never regret it.
Don't forget to register for Jog for a Cause on March 8th. Go to www.jogforacause.com for more information and to register.
Also, please pray for our friend, Justin (4 years old), who's beginning his first week of antibodies in NY. You can never explain to a parent how much pain their child will be in during treatment until they see it for themselves. As a parent, you know it's for the best, but no one likes to see their child suffer.
Have a blessed day! Please continue to pray for Kylie's good health, the health of all children with cancer and a cure for ALL cancers!
love,
Raquel
Wednesday, January 30, 2008 11:31 AM CST
We've had a more exciting week than normal around here. Kylie woke up Monday night in one of her usual night terrors, but it seemed to go on longer than normal. She started grabbing her ear in the middle of it and then she seemed to come out of the "trance" she's in with the night terror and then told us her ear was hurting. We tried to coax her back to sleep, but she was in obvious pain. I decided after all of her past ear infections (and 3 sets of ear tubes) that we probably needed to take her in to be seen. Well, as luck would have it, the urgent care center had just closed. So, Kylie and I got all bundled up for a road trip to the ER. After 10 minutes in the car she told me it was feeling better and she wanted to go home. Back we went. I told her she could sleep in my bed in case it hurt again. She started snoring almost immediately and then about 2 minutes later, she started screaming again. Once again we got all bundled up and headed fo the ER. Over 3 hours later we returned about 1:30 am with antibiotics. She felt fine the next day, but didn't get enough sleep to go to school. She even took a nap and still went to bed on time last night. As usual, she seemed right at home in the hospital and with the doctors and nurses. They loved her. Her ER doc even asked for one of her bracelets to hang around his stethascope!
Christian had his 2 year check up Monday. It confirmed once again what we already know: he's tall, skinny and has a huge head. Otherwise, the picture of health!
And, to top it all off, I now look more like the mother of my son. I am officially a RED HEAD! No, not strawberry blonde, dark RED! It was hard to get used to at first with the stark difference and I felt a bit pasty until the miracle of self-tanner kicked in. Now it's faded a little and my hair is about the same shade has Christian's, only a little darker. Not once since I had it done has anyone asked me the "sooooooo, where'd he get that red hair from?" that I hear every single day. Drew said he feels like he's cheating on me with another woman. LOL!
Don't forget to sign up for the Jog for a Cause race on March 8th! Go to www.jogforacause.com to sign up on-line. If you'd prefer to send a check in through the mail, e-mail me or post in Kylie's guestbook and I'll e-mail you a copy of the flier for you to print out. Remember, we're offering a dry-fit type shirt this year for all runners! You can't even buy one of those in a store for the $20 fee we're charging for the race!
Have a blessed day! Please pray for Kylie's continued good health, the health of all children with cancer and a cure for ALL cancers!
love,
Raquel
Thursday, January 17, 2008 11:40 AM CST
Nothing much going on around here except business as usual. Kylie finally (aftr 3 1/2 weeks off) went back to school on Monday and we're back in the swing of things. Her soccer starts back up again tonight which is always fun to watch. I use the term "watch" loosely because most of my time is usually spent chasing Christian from running out on the field or out the doors to the parking lot (she plays on an indoor field). Speaking of my little "Dennis the Menace"...the other day I went upstairs with Kylie and we came down only to find the front door wide open and he was at the bottom of the driveway in his P.J.'s. Thankfully that door has a lock he can't reach, but one of Kylie's friends had just left and must have went through the front door instead of the garage. My heart rate is tested almost every day with him due to some good scares!
Drew's back doing his ESPNU gigs a few times a month. He can't do much more than that due to his regular job. He enjoys staying in touch with basketball and he's really good at it. Unfortunately, I rarely get to see him since he's on satellite.
I've been really busy getting the race organized. We're now meeting weekly and I spend most of my free time getting things organized and trying to get more sponsors. It's time consuming and frustrating at times, but so worth it. Other than being a mom, for the first time in my life I feel like I'm actually doing something that matters in the lives of others. It's a great feeling. Our pre-registration link is now up at our www.jogforacause.com site. We are stepping it up this year and we are giving out high quality moisture wicking shirts (a/k/a "dry fit") to each runner. These shirts usually retail for about $30 so you're actually saving money by running! : ) We'd love for all of Kylie's supporters to come out and be a part of this. And, we're still looking for sponsors if any of you have a company or work for a company that would like to sponsor. We also accept personal donations or you could always be a "phantom" runner and register but not really run. We had several of those last year for people who wanted to help out, but weren't into running or walking in races.
Please say a special prayer today for Justin (www.caringbridge.org/visit/justingaudineer). He's our pediatrician's nephew who I told you about who was diagnosed with Neuroblastoma last year. He's up in NY having scans and bone marrows this week. He's had trouble getting his marrow clean so far and we pray that all of his scans and tests come back 100 lear so he can receive some of the treatments that Kylie received in NY.
Have a blessed day! Please continue to pray for Kylie's good health, the health of all children with cancer and a cure for ALL cancers.
love,
Raquel
Monday, January 7, 2008 9:48 AM CST
I can't believe Christmas was two weeks ago! Time has flown by. We've enjoyed having Drew around the house more over the holidays. He never takes time off since he has to take so many days from work for our trips to New York with Kylie. He deserves a long vacation one day when we convince the doctors that Kylie's healed and we don't have to make those long trips anymore.
We had a great Christmas and the new year has been wonderful as well. We were able to spend much needed time with friends and with family. Drew's grandmother, mother and step-father flew in last week from California to spend a few days with us and his brother's family and to celebrate Christian's birthday. Yes, my little man is now 2 years old! Seems just like yesterday that Heather reported the delivery to you on the journal. Something about that magic age of 2 makes you start thinking of having another baby! (shhhhh, don't tell Drew I said that!)
Kylie's school was cancelled this week due to a water main break so we get another week at home together (okay, part of that last sentence was sarcastic!). Thankfully, her classmates started calling this morning and we've arranged playdates and an impromptu soccer practice and pizza party so we should be set with activities. Plus, the weather in Atlanta has been wonderful (68 or so today!) so it makes outdoor playing enjoyable.
On a final note, we're gearing up for our 2008 Jog for a Cause race which is being held March 8th in Alpharetta. For anyone who doesn't know about it, it's a 10k, 5k and 1 mile fun run (10k times are a Peachtree Road Race qualifier) and the proceeds go toward three childhood cancer charities, including Kylie's medical fund which has been the only way we've been able to afford these trips to New York. If you remember, Kylie's pediatrician (Dr. Greg Cabrera) founded the race and his nephew was ironically diagnosed with Neuroblastoma this past summer. His medical fund is also one of the charities benefitting from the race proceeds. I've been able to really dedicate my time to this race in the past two years, especially this year. It's becoming more and more organized and we hope to one day have the race become a Neuroblastoma race which would benefit all children suffering from the disease. Please mark your calendars and feel free to check out the site at www.jogforacause.com. I'm not sure if the registration is available yet. Also, we'd welcome anyone who would be interested in sponsoring the race. I have a sponsor packet I can e-mail anyone who would like to read up on it and submit it to their businesses.
Have a wonderful, blessed new year. We pray that this new year brings us all health and happiness and finally a cure for cancer.
Please continue to pray for Kylie and all children with cancer and for that cure we've all been waiting for.
love,
Raquel
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