Remi has been feeling great. On Thursday's appointment her white blood cell count was low. This means if she gets sick, she cannot fight off infection. We have to keep her away from crowds during this time. We were able to slip away on a boat ride to Shell Island on Saturday. Remi and Chloe got to play in the sand and had a great time. It was wonderful to see them both playing and having fun again. Sunday, Remi got to ride her bike for the first time in months.
October 15th:
Last week started out with Remi's white blood cells low, but by Thursday her counts were up again. The doctors were very happy with the way Remi was feeling. We also received good news for the surgeon. He feels after reviewing the last CT scans that he can remove the tumor completely. We promised her if she felt good, we would take her to any park she wanted. Remi picked Sea World. Remi and Chloe like to go to Sea World and watch the Divers swim to the bottom and pick out oysters. Once the divers get the oysters, they open them up and there are pearls in them. One of Remi's oysters had two pearls in it.
October 16th:
Remi went to school Monday, Tuesday, and Wednesday; she has been feeling great. Thursday was chemo day and Remi only spent one night at the hospital. Friday her blood level was low and she had to receive another transfusion. We went home Friday afternoon and had an overall good weekend.
Remi did not go to school this week. Monday she was not feeling too good. Wednesday, Remi had the stent in her ureter replaced with another one. The doctor said the tumor had shrunk some but wanted to replace the stent instead of removing it. Remi's white blood count on Thursday was back low again and she was unable to be in crowds. We are hoping that our visit to the doctors on Monday, October 31st, will bring us good news that her counts are up, so she can go trick or treating.
Remi was able to go trick or treating on Monday and she had a great time. Tuesday we did the CT scan and the tumor has shrunk some but the surgeon does not think it has shrunk enough to operate yet. We will go through another round of chemo this Thursday and scan Remi 7 to 10 days after that. We would like to thank Richard Gonzmart from the Columbia Restaurant for his efforts in raising money for childhood cancer. Richard presented Remi with a medal from the Rochester Marathon he and his running team won earlier this year. It was an exciting evening with Remi and two other cancer patients, Mark and Billy, starting the 5k race which took place in Ybor City. We would also like the thank all our family members who participated in the event and especially Jason and John Accardi, who were one of the sponsors.
November 14th:
Remi went to school 3 days this week. She is feeling great. Our doctors reviewed the latest scans and determined that they are not ready to remove the tumor yet. we will go through two more rounds of chemo one of which took place on Thursday. We are planning on the next scan to be mid December and hope to have the surgery before Christmas.
November 27th:
For the past two weeks Remi has had some ups and downs but overall she has been feeling okay. Thanksgiving was a wonderful day spent with our entire family. Remi loved playing with all her cousins and even played a little basketball. We went on our annual tree cutting trip to Ergle tree farm and stopped in Dade City to hand pick oranges from an actual grove. We spent the weekend decorating the tree and house for Christmas. Remi and Chloe's old babysitter Melissa, stopped by to see the girls while she was home for Thanksgiving. This was a special treat as they really miss her since she went away to college.
December 4th:
Remi's chemotherapy was Tuesday instead of Thursday this week. She handled it well and she went home on Wednesday. We did a MRI of the brain, neck and orbits and the cancer has not spread to those areas. We are very happy for that. Next week we will scan the rest of her body and expect the same.
December 11th:
Remi's full body scan came out clear. The surgeon reviewed the reports and feels the tumor has shrunk enough to be removed. He has scheduled surgery for December 20th at Tampa General Hospital. We are very excited and have been waiting for this day but we are also very scared. Please continue to keep Remi in your prayers as we go though this next phase in our journey to fight this terrible disease. Remi should respond well to the surgery, and we hope to be home for Christmas.
December 18th:
This week was a week of anticipation. On Thursday, Remi and Chloe went to a function with the Children's Cancer Center at the International Mall. They went to Sadie's for pictures and Build A Bear for a wonderful evening with other Cancer kids and their siblings. We would like to thank the volunteers who donated there time and money, It really meant a lot to the girls. While they were at Build A Bear, Channel 10 filmed the event and Remi and Chloe were on the 11.00 o' clock news.
December 21st:
Remi went into surgery Tuesday @ 1 pm and it lasted until almost 7 pm. The doctor is confident he removed the tumor. Remi got out of ICU today around 4 pm. She is in a lot of pain and running a little fever, but overall doing well. The recovery is not an easy one due to the length and extent of the surgery. We are very excited that the tumor has been removed but still have a long way to go. The doctor sent the tumor along with several lymph nodes to the pathologist. We are now checking to see if there is any additional cancer in the intermediate area. These results should be out in a week or so. Depending on how Remi does in the next few days will depend on us being home for Christmas. Thank you to everybody for all your prayers. We believe the power of prayer does work. Please do not stop the prayers yet as we still have a long road ahead of us.
December 25th:
MERRY CHRISTMAS!!!
We made it home. Remi did great on her recovery and we left the hospital Saturday early evening. We are home for Christmas and has been great. We woke up in our own beds and Santa Claus came in the middle of the night. This has been the best Christmas ever. Remi is feeling great and is not in any pain.
January 1st 2006:
Happy New Year to all our friends and family. Thanks again for all your prayers and generosity through this trying time in our life. Remi is feeling great after the surgery and we all took it easy this week. Most of the test came back negative and it looks like the entire tumor is gone. This week we start chemotherapy up again and get ready to start a 5 week daily radiation treatment. If all goes well we should be done with all treatments by summer.
Remi is feeling great. We had a very busy two weeks. Remi started chemotherapy for the first time after surgery. It was a little tough on her but she was home in two days. Remi's Stent was removed from her ureter. This was another big step for us. Her Bladder and kidneys are working just fine. We did a new CT scan and the report shows that the tumor is no longer present... It was a great feeling to read that report. Radiation started this week and Remi is handling it well. She has no side effects yet and we hope if she as any at all, that they will be minimal. Remi went to assembly last week and got on the microphone and led the school in her favorite prayer. We are so proud of her and her sister for the way they have handled this whole journey. We learn from them everyday. They have made us much stronger parents. We can't thank our friends and family enough, Every time we turn around, someone is there to help and it really does mean a lot. Till next week, God bless and give your kids a big hug and kiss every chance you get.
January 29th:
Remi is feeling great. She finished her 2nd week of radiation and has had little to no side effects. Remi went to school for a whole week and loved it. We met with the surgeon who said that Remi is doing exceptionally well and feels she will keep on that same track. Last week we went in for another round of chemotherapy. We were out of there early the next day. It was the shortest stay we have had. We still have a long road ahead of us, but I feel we are on the right track. We have gotten the tumor out of her and now we just have to hope and pray that is does not come back.
February 5th:
This week, Remi started back on her weekly chemo treatments and we finished our 3rd week of radiation. Remi is handling it well. She received a blood transfusion on Thursday and bounced right back. Her white blood counts and blood platelets were low and we had to keep a close eye on her this weekend. Her radiation treatment was canceled on Friday due to this and we hope to resume treatments on Monday.
February 12th:
Radiation treatments started again on Monday. Remi has not been able to go to school because the combination of radiation and chemotherapy has continually kept her white blood counts low and this is when she is very vulnerable to sickness. We do have allot of good days and she is overall doing well. This will be the last week of radiation and we are looking forward to finishing this next step in our journey.
Friday was a special day, it was the last day of radiation. Remi was so excited not to have to go to the hospital every single day any more. We celebrated by going to the Fair and stayed all day long. We all had a wonderful day with the Carson family. Tomorrow we will start back on our weekly visits and every three weeks we have our overnight stay. We have Six more overnight treatments and this should take us to the end of June for our last treatment. Remi's spirits are high and we hope to get her back in school soon. We are planning a full body scan in March and are positive it will be tumor free. Thanks again for all the prayers and please don't stop thinking about Remi as she still has a long way to go.
March 6th:
Well this has been a tough two weeks. After our last treatment of radiation, that Monday we checked into the Hospital for a chemotherapy treatment. Remi got sick after that with cold like symptoms. Everyday after that Remi was sick, by Sunday we had to check Remi back into the Hospital. She was very dehydrated and very sick. After several days , we found out Remi had a virus called Rotavirus. We finally were discharged on Friday afternoon and Remi has been feeling allot better.
March 12th:
This past week was not a great one. Remi went in for a CT scan on Monday and it showed a small intestinal blockage. The doctors at St. Joseph Hospital sent us back to Tampa General Hospital to consult with Doctor Padais, the surgeon. They were concerned that scar tissue had grown around the small intestines and that this would involve surgery. Remi was not allowed to eat and a Naso-Gastric tube was inserted into her stomach. After a few days, and a few more x-rays it was determined for now that we would not have to do surgery. Remi came home from the hospital on Thursday and is still having occasional stomach pains. This Thursday we will do a full body scan. this will include another CT scan. Hopefully nothing else will show up.
March 19th:
Remi had a great week. All scans came back clean, no sign of tumor anywhere. The Doctors said this is the best she has ever looked. We still need to put some weight on her, but that will come in time. Remi is eating everything in sight. Remi’s chemo stay at hospital was short, We were out of the hospital on Friday. Remi did her first Penance on Saturday and it was great. She was so excited and we spent the rest of the day at the Zoo.
April 9th :
Remi has been great..... Since the last scans Remi has had no "speed bumps". We have been participating in charity events for the past three weeks with the Pediatric Cancer Foundation. We went to a very special breakfast with the foundation, they are so wonderful in there fight for finding a cure for childhood cancer. Catherine and Remi went out for a day at the Spa at Saks Fifth Avenue. They were picked up in a new Mercedes sponsored by Mercedes-Benz USA., then they were treated with pedicures, manicure's and a full makeup makeover. The following week we were able to spend a few days at the beach. We all went to Shell Island in Tierra Verde. That is Remi and Chloe's favorite place to go. This past week, we spent Monday night in Brad Richards suite, of the Tampa Bay Lighting #19. The girls and I, along with their Uncle Stephen and friend, Victoria Docobo watched the game and had the pleasure of meeting Brad after the hockey game. Thank you to Brad and his staff for a fun evening. On Tuesday, Remi was in the fashion show for the foundation called "Fashion Funds The Cure" it was sponsored by Mercedes-Benz USA, Saks Fifth Avenue and The Bank of Tampa. It was strictly to raise money for funding research for childhood cancer. Remi was in the show, along with 18 other children with cancer. It was an exiting event. Remi was so happy walking down that catwalk. We would like to thank Chad Harrod of Harrod Properties Inc. for sponsoring Remi.The night was filled with such joy and excitement, Remi along with her new friend Camille, met many celebrities, their favorite I believe was Chad and Christie from the morning show on 94.9 F.M.
We would like to say Hi to Camille and her family, Camille is a very special person and she and Remi have become friends. Camille and her family are battling this terrible disease like us and just being able to talk to another family who so closely reminds us of ourselves is truly a blessing. I was able to see Camille and Remi walk down that catwalk the other night and the smiles on there faces were unbelievable, I was happy and sad at the same time. I was touched that night and I know there will be many more catwalks they will walk on in the future.
This past week Remi went in for another round of chemotherapy. We stayed 2 nights this time. Remi is back on the full VAC treatment and will start back on weekly chemotherapy treatments soon. We have 12 more weeks of her protocol, that translates to 4 more overnight stays. Can't wait for that day.
April 30th:
Hope everyone had a Blessed Easter!!! We started our Easter Sunday at the early Mass and spent the day with our family.
Remi had her wish fulfilled thanks to the Make-A-Wish Foundation. Remi’s wish was to go to Walt Disney World in Orlando, ride in the parade and meet Minnie Mouse. We actually were the Grand Marshalls of the parade and rode in a car leading the afternoon parade...It was truly amazing!!! Thank you to Dean from Walt Disney for making the experience so much fun and memorable for us all. Remi had the special treat of meeting Minnie Mouse privately!!! She was so excited and enjoyed every single minute…. We would like to thank the Make-A-Wish Foundation and our wish coordinators, Melody, Yari, Chris and Becky for everything they did to make Remi’s wish come true and turn out truly special!!!
The Make-A-Wish Foundation also treated us to tickets to Universal Studios…We really enjoyed our time there; we would like to thank Judy and Ariel from Universal for making our trip to the parks so extra special!! Remi and Chloe loved meeting Sponge Bob and had a great time at Islands of Adventure…
Remi has had a great couple of weeks and the Disney vacation was the first time we have been able to get away from everything and enjoy ourselves as a family without having to worry about hospital stays and clinic visits.
Remi went in for Chemotherapy on the Thursday and stayed till Saturday. She is still struggling to recover from the treatments quickly, but she just looks forward to them being over in June.
Thanks for all your support and prayers for Remi and our family. We have had a few interesting weeks. Bay News 9 interviewed our family on behalf of Monsignor Higgins. We felt honored to share our thoughts and memories with the community. Monsignor continues to be in our prayers to make a speedy recovery. After Remi finished her last Chemotherapy treatment, We were admitted back into the hospital a few days later for an unexplained fever. After two different kinds of transfusion's and a 5 day stay, we were released and Remi was feeling good again. Remi and Chloe were in the St. Lawrence talent show and did a wonderful job. they sang a song called Unwritten by Natasha Bedingfield. Remi received her First Holy Communion on Saturday. It was a special event for us. We have been waiting for this day a long time and feel blessed that she was able to receive this Sacrament. Remi was invited by the Pediatric Cancer Foundation to film a Public Service Announcement with Warren Sapp at his Celebrity Golf Tournament, Diamonds and the Rough at the Grand Cypress Resort in Orlando, Florida. The PSA should air this fall on major networks. We would like to thank Warren and Jamica Sapp for a wonderful weekend and all they do to support the cure for childhood cancer. Remi will check in this Thursday for another round of Chemotherapy, Please keep her in your prayers as we only have a couple more treatments to go.
June 7th:
We have been very busy with the end of the school year and treatment schedule.
Remi was able to participate at the end of the school year party. The two
second grade classes surprised her with class picture and a beautiful hand
painted plate of all her homeroom classmates, Thank You to Ann Pavlakis for
the time and love she put into painting the plate, it is beautiful and
priceless!! Also, Thank you to the homeroom moms and especially, Linda Leone
for making the celebration extra special for Remi to remember!! Things have
been going fairly well, we did have another scare with a small obstruction on
Memorial Day weekend , which we ended up back at Tampa General again, with Dr.
Paidas...With a few days of bowel rest, her obstruction cleared and we were
able to leave. Thank you to Dr. Paidas for taking such good care of Remi..
Remi was asked by Make A Wish to participate in Devil Rays game on Tuesday
against the Angels. Remi was Tuesday's Champion and threw the first pitch at
the game. She had allot of fun being on the field and meeting the players.
Thank You Make a Wish!!
We are going in for our second to last chemo treatment this Thursday and
should be out by Saturday. The last treatment is at the end of this month and
we hopefully be done with everything and get back to a normal life.
June
29:
Remi has had a few speed bumps but overall is doing well. The last round of Chemo has been delayed. Remi has a troubling spot on the wall of her bladder that was caused by the harsh effects of the Chemotherapy drugs and the radiation treatments. This spot has tested last week and showed no signs of Cancer. We have to wait three weeks for this to heal and then we will determine when to give the last round of Chemo. So far Remi and Chloe have had a great summer, They went to Camp at the Children’s Cancer Center
August 13:
Hi everyone, just wanted to take a moment and give you all an update, I know it has been long over due.
October 16th:
Just a short note to let everybody know that Remi's 3 month scan is all clear. We will put up a more in depth update soon.
November 1st:
December 1st:
January 18th
We are so happy to say that the Breakfast of Hope was a enormous success...so far we have raised 300k!!!
It really was a very difficult morning for our family. It was the first time we have ever shared our story. Remi and Chloe had no trouble and did a beautiful job delivering their speeches. Patrick and I , of course, as parents, had a much more difficult time sharing our journey.. It was hard to go back and speak about those tough times with Remi and the toll the cancer took on our beautiful daughter, her sister, Chloe and us...
Every time I felt that I just couldn't do it, I just thought about what Remi went thru and how she suffered and never gave up. I needed to help raise her voice and raise awareness of the importance of the need for research. We need better drugs for our children who are battling cancer, ones without the harsh side effects...drugs that can help us ultimately reach our goal of finding a cure for this horrible disease...
We truly felt honored to have had been accompanied by our dear friends, The Rawson's. They were the presenting family at the Breakfast, their daughter Camille, is still battling cancer. We met last year when Remi and Camille were in the fashion show @ Sak's Fifth Avenue together and have been friends ever since. With all they have been going thru lately, I want to thank them for their presence at the Breakfast and to all they contributed to making the breakfast the success it was.
Also, we were very moved by three mothers of children who unfortunately lost their battle to cancer. I knew one family, The Duckworth's, they lost their adorable son Jacob last year. They were a family, I can truly say, showed us in the very beginning, that even though we were living at the hospital, that life must go on ..They taught us by example to make the best of everyday, no matter where you were and to keep hold of your faith, no matter what life brings you. They were and always will be such an inspiration to us.
Thank you to all of you who attended the Breakfast, I can't tell you what a beautiful feeling it was to stand up on that stage and look out and see all of you there to support us..It gives us and the families affected by childhood cancer..HOPE.. For all of you who couldn't be there we thank you for your support as well...We are forever grateful to you all...
Well, Remi has really enjoyed all of this attention...She is such a ham... For all of you who were wondering what her closing words were on Thursday, it was...Love, Hope, Have Hope In Cancer... She says this all the time, it is something she writes over and over..she made it up, we know this is from her heart..
We were honored to have the opportunity to help spread the word about the Breakfast and what the mission is of the Pediatric Cancer Foundation. Hopefully all of you were able to see the piece our family did on the 5:00 news on ABC Action News with Susan Casper...They spent a lot of time with our family and Barb Rebold, the executive director of the PCF..We hope it helped raise awareness..Thank you Susan for your special interest in the story and to Aimes, the photographer whom the girls kept busy...We are working on getting a link to the broadcast so everyone can see it...
We are trying to get things some what back to normal around here, we enjoyed the weekend celebrating Nana Loretta's birthday.. Happy Birthday Nana.. We love you.. Please keep her in your prayers as she has only 2 more chemo treatments left. She has been so strong thru all of this, she too, is such an inspiration...
Lastly, I would like for you to keep Camille in your prayers, she is relapsing and is still waiting to decide on their next treatment plan. Please pray for complete healing for Camille and strength and comfort for her family..
Please pray for all children affected by cancer, they all need our help and prayers...
March 8th
It has been a busy month for all of us, the girls are just so busy with school work and projects, they both are looking forward to Spring Break... Remi has been feeling fine, she has a doctor appointment next week and we will set up a date for her next set of scans in April.
I forgot to mention two amazing young girls last update who have reached out to Remi and touched her very much...Kati and Gianna Messina. These twin sisters are seniors at the Academy of the Holy Names, their mom Cathy is a dear old friend of mine. They heard thru family of Remi's illness and on their own wanted to help. They raise money for Remi. and gave it to her in January. She was so honored to accept it and was very touched by their interest and concern for her. I want to thank Kati and Gianna for really making Remi feel special !!!
Remi is looking forward to being in the Fashion Funds the Cure fashion show again this year. Please come out to Saks Fifth Avenue and show your support for these girls !! The fashion show is being held on Tuesday, March 27th from 6:00-9:00 p.m. Hope you can make it, it is truly an enjoyable evening....
Last week I had the opportunity to meet with several other cancer moms and the ladies from PCF. We together are working on some exciting things for the near future to help raise awareness for Pediatric Cancer. This Friday we are excited to attend a breakfast hosted by the PCF and the Dream Team of Doctors working on the research for the Foundation. We are thrilled to hear of the progress that has been made in their research so far...
I want to thank all of you for helping us thru contributions and especially thru prayer.. Without all of the support we would not feel as hopeful as we do today.. There is so much sadness and heaviness around us these days, many children and families we know need our prayers and support. Please continue to pray for Camille and the Rawson Family and please keep Nana Loretta in your prayers. As always we appreciate all of your love and support..
March 30th
The 4th Annual Fashion Funds the Cure was a overwhelming success, The Pediatric Cancer Foundation, with the help of 5oo guests including sponsors, donors, models and local celebrities, raised a record breaking $165,000.00 !!!! Tuesday night at Saks was so incredible, it was filled with people who made you feel so much hope with their interest and passion to make a difference for children affected with cancer.
Channel 10 had a huge presence at the Fashion Show,; Tim Wilkins, Dave Wirth and Mario Diaz were amongst the celebrity escorts. Remi did a interview with Mario backstage and it aired Wednesday morning, she did wonderful, it is amazing the things she says, it's straight from her heart. She said that " she who stick by someone who had cancer no matter what, because she wouldn't want to be selfish , because no one was selfish to her" Remi has learned so much, so quick, but it has really given her so much character and has taught her the true meaning of life and it's blessings. Chris Simms, Michael Clayton and Dave Andreychuk were some of the sports escort celebrities, they are always so supportive and such a pleasure to be around. Remi most favorite was Chadd and Kristi Thomas from Mix 94.9 fm. Kristi did a wonderful job as Mc for the show and Remi got her wish to be escorted by Chadd, she was so happy. Thank you Chadd and Kristi !!!!
Remi along with 26 other young ladies, all who are in and out of treatment, strutted their stuff and made every one of us proud. Every single one of them were so beautiful, beaming with confidence, they were examples of courage and strength. The show started off with a heartwarming dedication to two lovely ladies, Karyna Ramos and Kelly Muldoon, who both lost there battle this year. They both were such beautiful girls and will always be inspirations to us all and will never be forgotten.
Remi was sponsored again this year by Chad Harrod of Harrod Properties, Chad was also the Fashion Show Chair and Past President of the PCF, he is a very special person to our family and has always shown such a great intrest and love towards Remi, Thank You Chad !!!
Remi had a wonderful time at the Fashion Show she was amongst many of her friends she has made thru the PCF and CCC. She was thrilled to see Camille, Dana, Stephanie, Melody, Molly, Samantha, Carlee, Taylor A, Taylor D, Sierra ,and Lily. Camille and Remi were so cute getting dressed and waiting backstage, it is memories they will cherish forever. It was a little over a year ago that Remi and Camille became friends and that I became friends with her mom Vivian, we feel so blessed to have them in our lives. When we met it was like we had known eachother our whole lives, we just clicked and then we introduced the rest of the family and we all just got along so well, it was pretty neat.
I want to thank two special girls, Dana and Stephanie, for always reaching out to Remi and being such a wonderful example to her. You two girls are beautiful inside and out and you give Remi so much hope, courage and love, it is one thing I know that she will always remember. You both give from your heart and I just want you to know how very special you both are to Remi and our Family..
Remi was so ecstatic, a lot of her family came to see her in the show, her cousins, Gianna and Gabriella; her Godparents, Uncle Jason and Aunt Danielle; Uncle Stephen and future Aunt Stephanie, Aunt Andrea and her mom Aileen, Aunt Tee Tee, Nani Sylvia and Papo Julius !!
Several of her friends from school came to show their support, Samantha and her sisters, Victoria, Nicolette ,Courtney and Kaylyn. Thank you girls for beingat the show to support Remi, she was so happy to see you all !!!
Remi chose her dress, it was turquoise with a plum bow print, she wore pearl earrings and two pearl necklaces, she looked so beautiful !!! She was so excited and grateful to hear at the end of the fashion show that Dan Doyle, purchased all 27 girls in the fashion show their dresses !!! What a treat that was, Thank You Dan Doyle !!! We were so glad to be part of the fashion show again this year and we are so happy it was such a huge success, it is one more step closer to helping find cures for childhood cancer...
We have been so busy this month, besides the excitement of the Fashion Show, it was Chloe's 11th Birthday on the 21st ..Happy Birthday Chloe !!!!! Remi was so happy to be able to share in the celebration this year , last year her counts were too low and she was not able to be here.. Chloe had three girlfriends over and we all went to get manicures and pedicures, dinner, and movies at Blockbuster. The girls came back and played with silly string, swam, ate cake and stayed up and watched movies until late, they had a blast...
I have lots of new pictures posted of the Fashion Show, Chloe's Birthday and Remi and Daddy's day at Lowry Park Zoo... Remi and Patrick had a Father/ Daughter Day while Chloe and I did our annual birthday shopping day together. Remi had such a great time. she told me her favorite part is when they saw the mommy elephant and her baby playing in the water with a ball, the pictures are so cute. She also fed a giraffe and held and fed a bird.. She loves animals and especially going to the Zoo..with her Daddy...
Please continue to keep Nana Loretta in your prayers, we have just learned that her pet scan showed 3 lesions on her liver. We are still waiting to hear what will be the next step. Please pray for her strength and healing.. Also, please keep Camille ,close in your prayers she needs healing as well.. Remi will be undergoing her 9 month out of treatment scans on Monday and Tuesday, please pray that the scans show she is still in remission. Keep all of those affected by cancer in your prayers, it seems lately that cancer is in the forefront, it's all I hear about, I hope that one day we all will have an answer for this horrible disease.. Thank you for checking in and I hope you all have a Blessed Easter.
April 6th
We are blessed to receive the news that Remi's 9 month out of treatment scans remain clear and show no evidence of metastatic disease!!! We are so thankful and are rejoicing at the news... She handled the two days of scans so well, we had a few problems both days with her port giving blood return, which meant she had to be accessed several times in the two days which is painful.. But Remi is always making every negative a positive.. She would cry and then just perk right back up.... I want to thank Leanne and all the staff at St Joe's Nuclear Medicine Department for taking such wonderful care of Remi Monday and Tuesday., you all always make us feel at ease and Remi so welcome and comfortable.. also thank you for Happy Feet Cd, she loves it... Also, thank you to Michelle who always performs Remi's CT scans. You are too are special to us and we thank you for your kindness always. One last thank you to Bonnie in clinic, thank you for your help with Remi when her port wouldn't work, you were so kind to come in early to access her on Tuesday, thank you again..
Well, We are going on a RV trip!!!!! We are so excited to do this, we have been wanting to try this type of vacationing for a long time.. The girls are thrilled.. Our first stop will be at Blue Spring State Park, we will go tubing down the spring and enjoy our first day, then we will be off to Kennedy Space Center, we are trilled to do the day long tour, we will then be off to our final destination.. Anastasia State Park, it is on the beach and we can't wait, The girls are really excited to visit St. Augustine, there is so much history there, we plan on spending one full day there..
We are getting ready for Easter, I plan on taking the girls to confession today , they wanted to go before Easter. I We are spending Easter this year with Nana Loretta, everyone is bringing a dish over and we will celebrate Easter this year at their house. We look forward to spending time with her and having Easter there. We always enjoy the egg hunt at Nana and Papo's because they have the best yard for the hunt.. lots of trees and bushes to hide all those eggs...
We hope you all have a Blessed and Happy Easter, if you are on Spring Break. Enjoy... I know we will....
Also, Please remember Fashion Funds the Cure's 1st Annual Fashion Show in Orlando, Tuesday, April 17th ... Remi has the honor of being in this show as well.. We look forward to being part of it.. To find out more information or to attend please follow the link on Remi's homepage..
May 2nd
I am finally able to update, our home computer has crashed and I was unable to update because the frontpage account was on our home computer..
I update this morning with a happy yet very heavy heart. I am happy to tell everyone that Remi had her medi-port removed yesterday by her surgeon, Dr. Paidas!!!!! We are so delighted and are very blessed to have reached this point in Remi's recovery. She has been free of cancer for 9 months and in July will reach her year marker!!! Thank you God!!
I am saddened to say that we lost another friend we made at our hospital, Taylor Arrington, she was such a beautiful and sweet girl, who fought so hard for 3 1/2 years, we will never forget Taylor or her twin sister Jordan and her wonderful parents, Mary Kay and Cary. Remi and Taylor met at St. Joe's during treatment and would see each other regularly at the clinic. The girls helped raised awareness together doing commercials for the Pediatric Cancer Foundation and enjoyed going to many events put on by the Children's Cancer Center and The PCF. Our family attended Taylor's funeral mass on Saturday, it was a beautiful service, the girls were very sad and it was a difficult morning for us all, remembering Taylor and saying goodbye. After the service was over, they had a balloon release, all the balloons were released after a prayer outside, when we looked up everyone noticed a ring around the sun, it almost had a rainbow look but it was completely round, all the balloons went up into the ring, it was amazing, everyone was talking about it. After a few minutes passed we all looked up at the sky again and the ring was gone and so were all the balloons, this was definitely a sign from Taylor that she was with us and wanted us to know she is happy with God. this gave us so much joy and made us feel so much peace and hope. The girls witnessed this and I know that they felt the peace that God and Taylor were sending to us all. On our way home driving on the interstate Chloe said to us, "look there's a rainbow" , we all saw the rainbow and as we looked to the right there was a cloud and it was in the shape of a butterfly, it was amazing!! At the services for Taylor there were balloons shaped like butterflies everywhere because she loved them, this was just another beautiful sign that Taylor is definitely in heaven smiling down on us all. May God bless her and all the other angel friends with her in heaven, they will never be forgotten!! Taylor and her sister Jordan were very close and I ask you to pray for them both and their family, especially her a Mother, Father and her Grandmother Judy who was always there with Taylor, as this is such a difficult time for them. (www.caringbridge.org/fl/taylor)
I ask you to also keep Camille in your close in your prayers. She is in New York and had her spleen removed, there was more cancer, please pray for her healing and speedy recovery.
Nana Loretta, had her surgery and found that her cancer had spred to her diaphragm, the tumors were removed and a port was put in her stomach , she will soon start a 9 week chemo treatment. Please continue to keep Nana in your prayers, she is still in allot of pain and is back in the hospital.
Things are so difficult around us , we are trying to stay positive and happy regardless. We celebrate and thank God everyday for everything we have and how well things are for Remi. It is just so hard to feel completely elated as people we love are going thru so much. All we feel we can do is be there for them all, pray for them and keep trying to raise awareness and help keep hope alive. Until you are directly affected by cancer you can never understand the horrible feeling of desperation to help and try to change things.
June 18th
The summer break is really kicking in now, we can honestly say that we are out of our usual routine. .it feels great!!!! We have had so much fun since the girls finished school. We started off with spending Memorial Day with my family at the beach and with our friends the Rawson's. We had a great weekend out at the beach and boating. Thank You to the Rawson's for a fun day at Egmont, we had a great time hanging out and spending time together. It was the first time we have gotten to see Camille since she has returned from NY. Check out the new pictures, the girls had so much fun together!!!
We spent a week at the beach and really enjoyed the time out there together, it was so nice and very quiet, just the way we like it. Patrick's Mom and Dad and my Grandparents came out to visit and spend the day with us along with Uncle Stephen and soon to be Aunt Stephanie. We enjoyed a visit from our friends the Turners too, the weather was perfect the entire week.. The girls enjoyed surfing the waves and trying to skim board.. We found lots of beautiful shells and Patrick found a sharks tooth, the girls went crazy... Remi did her usual digs to find coquinas, there were so may this year!!! Chloe enjoyed laying out with me under the tent reading magazines...and going on walks searching for shells...
Things have been great for us, ... The girls were both included in a fashion show put on by Joann Toretta from First Impressions to benefit Make A Wish Foundation. Chloe and Remi were both in two scenes, they loved being in the show and had so much fun together, Thank You Ann from Make A Wish for thinking of Remi and Chloe for this event and to Joann Toretta from First Impressions for including both girls and making them feel so special... We are getting ready for a visit from our friends and old neighbors the Alonso's, they moved last summer to Norfolk, Virginia, the girls are excited to see them.. Their daughter Tere will be staying over for a couple days, we are planning a barbeque and a trip to Great Exploration in St. Pete with some friends and Tere's brother Juan Carlos, it should be lots of fun.
We have a few things planned for later this summer but we wanted to wait for Remi to have her scans on July 9th and 10th.. These will be her 1 year scans!!!! It's hard to believe we have reached the 1 year mark. It feels like it was just yesterday that she was finished with treatment.. We are expecting everything to continue to be well for her and we have so much faith and hope that she will remain cancer free. I do get the worries at times but I try not to start in that direction and immediately go for the positive thoughts..
Patrick's mom has started her next phase or treatment, she goes in this Thursday for round 2 and then she has 1 more, then they will scan her again and reevaluate her. She had a little trouble at first but she seems to be getting stronger these last few days, she has gained weight and her spirits seemed more up. Thank you for all of your prayers for Nana, it keeps her very hopeful and gives her much comfort.
We had a great Father's Day weekend, we spent Saturday with my Dad, we visited him at his new home and had a great lunch in downtown St. Pete. The girls enjoyed seeing him and loved his new house, the really enjoyed his new puppy "Bruno", he was part pug and part yorkie, so cute!! We spent Sunday pampering Patrick with his favorite breakfast and showering him with gifts and lots of love.. he deserves all of it, We love you Daddy!!! We went to Patrick's Mom and Dad's in the evening and celebrated with his brothers, we had a great dinner and enjoyed talking about old times of the boys and all the things they put them thru ha..ha.. the girls really enjoyed all the stories..
Please continue to pray for children and adults with cancer, those who are in remission, and especially for those who have lost their battle. Keep all of these families close in prayer, to give them strength, hope and the will to get thru each day.. Thank you for continuing to check on Remi and our family, we truly appreciate your thoughts and kind words..
July 12th
We were happy to hear yesterday that Remi's 1 year scans showed that she is still cancer free and in remission!!!!! We feel blessed to have made it to this point in her recovery. The scans did show that Remi has pneumonia...We were hesitant to have her take the scans on Monday and Tuesday because she was still getting over what we thought was a bad cold..Thank God for those scans to show the infection. Dr. Tebbi started her on antibiotics and will take an x-ray of her chest in 12 days to see how she is doing.. The scans take alot out of us so we are exhausted from all that, but Remi did fantastic, she no longer has her medi-port so she was given IV's 2 days in a row..Thank you Michelle for taking such great care of Remi both days..and to Leanne and Brenda in Nuclear Medicine, we love you all..We are now scanning Remi every 6 months and getting doctors visits and labs every other month..it's hard to loosen those reigns...
We are enjoying the summer and have been spending allot of time at the beach. We have been trying to stay close to home right now, Patrick's mom (Nana Loretta) has been in and out of the hospital for a month or so , she has had some complications after her last treatment. Please continue to keep her close in your prayers...
Thank you for continuing to check in on Remi and her progress, we feel very blessed and very thankful and praise and thank God everyday for her improvement. Please keep Camille in your prayers, as well as all children and adults battling cancer, please also pray for my friend and former neighbor Jen, she is battling colon cancer: especially pray for those who have lost their battle and their families.
August 20th
The
First Annual
Cure
Kids
Cancer
Challenge
will take place on
September 29th
in Fish Hawk Ranch Park Square !
The first ever CURE
KIDS CANCER CHALLENGE - which is a 5K Family Fun Walk in our
area. It will take place on September 29, 2007 in honor of Childhood
Cancer Awareness Month. We are praying that this will be a big event
and raise money for the
Pediatric
Cancer Foundation
. The PCF is getting ready to
start 3 brand-new clinical trials - which will cost $12,000 per
child - so every dollar raised will make a difference!
This event, to benefit
the Pediatric Cancer Foundation will feature a 5K Walk/Fun Run and a
1 Mile family walk where participants will collect pledges to help
find a cure! All funds raised through the Cure Kids Cancer Challenge
will benefit the Pediatric Cancer Foundation, a non-profit
organization whose mission is to fund research that will lead to a
cure for childhood cancer. The Foundation is currently spearheading
a national research collaboration that has brought together the
country's top doctors and institutions to work together in
fast-tracking new successful treatments for children with cancer.
Every dollar raised, every dollar donated helps bring us closer to a
cure! Take the Challenge - join us at the first ever Cure Kids
Cancer Challenge and help fund research and hope for children with
cancer!
We are having a
Family Fun Day after the race/walk so please plan on joining us even
if you don't want to walk or run, but just have FUN!
Please remember
September is National Childhood Awareness Month
and more children will be diagnosed
this September than any other month of the year. Please join us or
donate to the first annual Cure Kids Cancer Challenge 1 mile walk
and 5K run on September 29th.
August 27th:
Happy 9th Birthday Remi !!!!!!!!!!!!!!!!!!
We love you with all our hearts.......
Mommy, Daddy Chloe, Lulu, Tiki and Stevie
2nd update:
****Please keep Nana Loretta in your prayers, she is inpatient at St. Joseph Women's Hospital, her cancer has further progressed to her liver and is now having complications with fluid in her lungs, she will be undergoing a procedure today to drain the fluid..Please keep her in your close prayers for comfort and healing..and for our family during this difficult time.*****
August 28th
Just wanted to take a moment and update on Nana Loretta. She did very well thru her surgical procedure yesterday. The doctors remove a large amount of fluid from her lungs, she seems to be breathing much better now and comfortable. I want to thank everyone who has stopped by the hospital to see her, it was so comforting for her as well as our family. I ask for your continuous prayers for Nana, for healing, strength and courage..She told me yesterday at her bedside, " Miracles Happen" and they do...with faith on our side, it's what we hope for the most..
Our day yesterday started with Remi's awaking to her 9th Birthday, she opened only two presents and saved the rest to open in front of her Nana after school. I brought 60 homemade brownie for Remi and her classmates at lunch time to celebrate. After school we went to the hospital and had cake and opened presents with Nana, Papo and her Uncles and Aunts, we bought a sugar free cake so Nana could enjoy some too. Afterwards we joined the rest of our family at Carraba's for dinner. Remi had a wonderful day and night surrounded by all her cousins and family.. The only person missing, was her friend Camille. Remi has really missed her and hopes to see her soon. Please keep Camille in your prayers, she is trying radiation therapy, she is 3 weeks into it. Please pray for complete healing, strength and courage to fight..Also pray for miracles with Camille and fill her heart with the love we all share for her.
It is very hard to explain the different feelings we are going thru at this time, we have been so heavy hearted about Nana and Camille and hoping and praying so hard for their recovery and healing and then yet trying to be happy and celebrate Remi, it's just a rollercoaster of emotions...I ask God to give me the strength and wisdom to deal with them and guide us all thru these difficult times.. Thank you all for continuing to support our family and our love ones, your encouragement and prayers are what really helps us and fills us with the hope we need everyday...
Please remember that September is National Childhood Cancer Awareness month, Remi will be doing her 2nd Annual Coin Drive again this year thru the month of September, all monies raised will go to the Pediatric Cancer Foundation..
We will also be attending the Cure Kids Challenge Walk on September 29th at FishHawk Ranch in Brandon, it is not too late to get involved and join us..If you can 't join us for the walk you can donate directly to the Foundation, the link is on Remi's Homepage for more info..
September 7th:
Our family is very sad to post that we lost our precious Nana Loretta Wednesday morning. We are comforted by the fact that she is in the loving arms of Jesus and is surrounded by the loved ones who went before her. She fought very hard and courageous with her illness to her end.. Nana is missed and will always be missed, she was such a very big part of our lives that will never be replaced, we are facing difficult days ahead of us but we are confident in that our faith will hold us thru each day..
Thank you all for your kind words of encouragement and constant prayers for our entire family...
STORCH,
Loretta A. "Nana", 72,
of Tampa went to be with the Lord on September 5, 2007. Loretta
was born on February 11, 1935 in Pittston, PA. She is preceded in
death by her brothers, Albert and Dominic Lombardi; sisters,
Loretta and Viola and grandson, Jason. Loretta worked 19 years as
a teaching assistant for children with learning disabilities and
was a life long member of St. Lawrence Catholic Church. She was
co-owner of Storch & Sons Seafood and was well known for making
the restaurant's signature dish, "Nana Loretta's Crab Enchilada."
Loretta was always passionate about cooking, but her greatest
passion was that of a mother and grandmother. She enjoyed nothing
more than doing everything she could for her family. Loretta
leaves to cherish her memory, her devoted husband of 55 years,
Julius C. Storch Sr.; her five loving sons, Julius Storch III and
his wife, Belinda, Gary L. Storch and his wife, Carol, Mark Storch
and his wife, Phyllis, Stephen Storch and his wife, Stephanie and
Patrick J. Storch and his wife, Catherine; her precious
grandchildren, Jamie, Amy, Brittany, Joshua, David, Chloe, Remi,
Lindsay and Paul; great grandchild, Jadon; sisters, Antoinette,
Mary, Delores and Mitzi and brother, Tony. Special thanks to the
staffs of Tampa General and St. Joseph's Women’s Hospitals and
especially her oncologist, Dr. Mitchell Hoffman and Dr. Giselle
Ghurani and to Monsignor Laurence Higgins. A funeral Mass to honor
her life will be conducted 12:30 Saturday, September 8, 2007 in
St. Lawrence Catholic Church with interment following in Myrtle
Hill Memorial Park. The family will receive friends from 3:30-6
p.m. Friday, September 7, 2007 at St. Lawrence Catholic Church.
Flowers are welcomed, however, those who wish, may make donations
to the Pediatric Cancer Foundation, 14005A N. Dale Mabry Hwy.,
Tampa, FL 33618 in Loretta's memory.
September 13th:
I want to first thank everyone who came to "Nana's" services last week, the support and love that was given to our entire family was overwhelmingly comforting. This week without Nana has been as difficult, as you could imagine, but we are holding on strong to our faith for comfort and guidance. We know she is resting in God's arms free of pain and cancer free....
I want to remind everyone of the 1st Annual Cure Kids Cancer Challenge on September 29th.
Please join us or help us with a donation towards the event. Remi has set up her "Team Remi Storch" and is walking for her friend, Camille Rawson and in honor of "Nana Loretta." You can sign up for the event on her fundraising page attached below or if you are unable to attend, there is an area for your donations.
We hope to see you at the walk, again thank you for your continuous support and prayers...
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Just in case you might have missed
this PSA for The Pediatric Cancer Foundation, click on the link
below to view it:
http://www.youtube.com/watch?v=lcsMq8FHbEU Pediatric Cancer YouTube Spot
October 25th:
It has been another busy month.. I can't believe October is almost over. The girls are excited about Halloween this year, Remi is going to be " Dracula's Bride"..lucky Dracula.... Chloe is going to be a "Indian Girl"...a" beautiful blonde" Indian girl... We will have our Annual Halloween night dinner and trick or treat.. Papo and Nani Sylvia will join us as well as Remi's friend Madison... We are looking forward to it..
Remi is doing well she has been having stomach issues lately, we met with a Ped. Gastro Dr. this week and she would like to do a Upper Gi on Remi, so we will be having that test on Nov. 1st. She feels this could just be affects from treatment and hopefully it will be a simple fix.. Other than that Remi is doing great, she started a musical/theatre class and a voice class with Chloe. She absolutely is in heaven and it truly is a pleasure to see her so happy ..singing and dancing..
We are happy to welcome our newest cousin to our family..Mia Catherine Accardi, was born Sept.17th!!! Congratulations Uncle John, Aunt Andrea, Big brother Johnny, Big sisters Lola and Lucia..We love you Mia!!!
We also want to wish Uncle Stephen and Aunt Stephanie...a safe and "Happy Honeymoon".. They will be leaving for Cancun this weekend, We hope you enjoy your honeymoon, you both deserve it... We Love You Both..
We are also pleased to announce that Remi was chosen as one the the recipients of the 2007 "What Drives You Award", she will receive the award at The Fisherman's Ball presented by Mercedes Benz, benefiting The Pediatric Cancer Foundation... Congratulations Remi!!!! The Foundation and Mercedes Benz, selects three children each year to receive this award, we are so proud of Remi and her strength and determination in battling cancer herself and for her contagious" hope" she spreads to others touched by childhood cancer.. We love you Remi!!! The Fisherman's Ball is held at the Tropicana Field on Nov. 9th @ 6:30, our entire family will be there to watch her receive the award, if you are interested in attending The Fisherman's Ball, the information regarding the event is below...
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Last but not least.. Please continue to keep Camille Rawson in your prayers, she is such a true example of a "hero", she is such as special young lady who is so dear to our family.. She has amazing strength and such a strong will to fight this horrible and disease.. Please pray for her strength to keep fighting and for her treatments to help her and mostly for all of her pain to diminish... Camille ..WE LOVE YOU!!!!!
I would like to end with some recent pictures I took of Camille and Remi...
Camille and Remi September 2007
Happy Halloween
STORCH,
Julius C. "Papo" , 76,
of
RAWSON,
Camille Marie 12, passed away on Friday Jan. 18, 2008, at All Children's
Hospital in St. Petersburg, FL. Camille was born in Clearwater, FL, Sept.
19, 1995. She attended St. Johns Catholic School and more recently Northside
Christian. Camille was beautiful inside and out and a very courageous child.
She lost her life to cancer after a 5 year battle of complicated surgeries
and chemotherapy's. Always bouncing back and always positive she became a
hero to all who truly knew and appreciated her plight. Camille touched many
hearts and changed many lives. She will always be known as the "warrior."
Camille is survived by her mom and dad, Vivian and Randy Rawson; sisters,
Bianca and Isabella; grandparents, Kent and Siri Rawson, Pete and Raquel
Guzman and Sandi and Dan Kane; as well as too many aunts and uncles and
cousins to mention, who loved her dearly. Camille will be buried in a
private ceremony, but there will be a Celebration of Her Life at the
Downtown Hilton in St. Petersburg, 6-8 pm, Friday, Jan. 25th. There will
also be a Memorial Mass at St. Johns Vianney Catholic Church, St. Petersburg
Beach, FL, 12 pm, on Saturday, Jan. 26th. In lieu of flowers, please make a
donation to the SPCA. Camille was very involved with the local SPCA and
adored animals. Address is SPCA of Tampa Bay, 9099 130th Ave. N, Largo, FL
33773. Online memorial & guestbook can be viewed at:
E-mail
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