This site is Dedicated 2 Deja!
So the world can meet a special girl who won't have a chance to meet the world!
Deja's Journal
This page was created to update you on Deja's condition and treatment.
Plz check back, as we will update pictures of our memories.
Just Added Pictures!
| 9/21/2006 | Deja had her appointment with the Nurologist to discuss her strange symptoms. The doctor was concerned about her eye movement and balance while walking and sent her in for an MRI. |
| 9/25/2006 | Deja had a MRI at Banner Desert Hosptial of her brain, brain stem and spine. She had to be put to sleep becasue of her size. It took a total of about 4 hours. |
| 9/27/2006 | The doctor called at 8:30am with the MRI results. She has a large tumor around her brain stem. He is referring us to a doctor at Phoenix Childrens Hospital (PCH) where we are being admitted tonight. |
| 9/28/2006 | We met Dr. Kaplan today, the nurologist at PCH. He reviewed her films with his team and gave us the diagnosis. She has a Pontine Brain Stem Glioma. The survial rate is less the 1% in children. |
9/28/06| 10/05/2006 | Deja had surgery today to place a Porta Cath. This was placed under her skin and will make it much easier for her to get meds. No more IV's needed. |
| 10/06/2006 | Deja was released from PCH today. She was started on a steroid called Dexadrone, which makes her eat like crazy. She is scheduled to start radiation therapy on Monday. They say the radiation will slow the growth of the tumor and maybe buy us an extra 4-6 months. She will go 5 days a week, for 6 weeks. Picture day is Sunday! |
| 10/08/2006 | We had family pictures taken today by the greatest studio in AZ! Portrait Innovations donated a picture package worth $315 so that we could have family pictures taken before Deja lost her hair or started to gain weight from her meds. She also was able to take beautiful princess pictures in a dress donated by Azteca Bridal of downtown Phx. This was all organized by Phx Childrens Hospital.. and we thank all of you very much. |
10/08/2006| 10/09/2006 | Deja had her radiation simulation today. This is to set the area being radiated. Her actual radiation is scheduled to start this Wed. and will be at Banner Good Sam. |
| 10/11/2006 | Deja had her first Radiation treatment today. It's a little scary. They have to put her to sleep for each treament. She gets a little scared and some times wakes up grouchy. She is very independant, so she wants to get up and leave when she wakes up... with no help! |
10/11/2006| 10/14/2006 | We are at treatment number 3 out of 30! Today was a big day! We went to the zoo with Nana. We were not there long, but we had a lot of fun. They have a carousel, which is one of Deja's favorite things to do. We had to ride it several times. We rode the train, and saw the lions, elephants, and monkies. |
10/14/2006| 10/20/2006 | Next week of treatment done. 8 down, 22 to go! Deja is doing very well. She is starting to understand the routine of things. Her symptoms are better, which is expected for a while. Her meds make her eat like crazy and make her very moody. She has gained about 12 pounds since 09/28. Her cousin didn't even recognize her because most of the weight is in her stomach and her face. She also had her first appointment at the treatment clinic at Phx Children's. They check her blood counts just to make sure she is handling radiation well. Which she is! Everything was great! We made time later this evening to squeeze in a movie. Deja, Olivia, and mommy all went to see Open Season. We had a great time together. |
| 10/22/2006 | Another Big Day! Our friend April made arrangements with Phx Botanical Gardens for Deja, Olivia and I to attend their pumpkin festival free of charge. We got to take a hayride out to a pumpkin patch and pick our own pumpkins. Deja loved the hayride, but Olivia had problems finding just the right pumpkin. There were so many activites for the kids, but Deja got tuckered out early so we did not get to enjoy them all. It was very organized, and a really great family event. We recommend it to everyone! Special thanks to April and the Phx Botanical Gardens. WE ALSO GOT A DOGGIE! We really thought this would help not only with Deja, but with Olivia as well. We named him DJ, which are Deja's initials. (Deja Jaleen). He is about 2 years old, and is very good with the girls. He's already potty trained and is very quiet too. He weighs about 13 pounds, perfect size for the girls. |
10/22/2006| 10/28/2006 | Another week done! 13 down, 17 to go. Almost half way! Deja is doing great and handling it better then I would. I think she understands that she is sick, and it is serious, but that's probably the limit to her understanding at this point. She is finally starting to be a little more active. She isn't playing real hard, but she'll sit at the table and play with crafts and color. We had an exciting day today too. We were invited to the East Valley Children's Theater to see there production of "Wonderland" (Alice in Wonderland). We had a great time. They made it very special for her. She even got to meet the characters and take pictures with them. These kids are so talanted, and we would recommend every one to see them in action. Special thank you to East Valley Children's Theater, and our dear friend April for putting it together for us. |
10/28/2006| 10/31/2006 | Halloween is very special around our house. It's Olivia's birthday! This one is extra special because we are half way done with radiation! 15 out of 30! We had a great Halloween party with some of closest friends, and Olivia got a Care Bear cake that her sister picked out special for her. It was like Christmas here. Lots of presents! Then off we went to Trick or Treat! Deja was a witch (a nice one she said), and Olivia was Minnie Mouse. They were both very cute. Deja got tired fast, but she just was having to much fun to quit. What a night! |
10/31/2006| 11/03/2006 | Down to only 12 radiation treatments! Which means November 21st will be the last one! We are looking forward to this! When the radiation is done, they will do another MRI. Many people have asked me about this.... As I have said before, the radiation is done to possibly extend her life. The typical response to the radiation is a decrease in the tumor size that lasts about 4-6 months. The tumor will eventually begin to regrow. Radiation is not repeated because most patients reach thier life time radiation dosage. There is a record of patients that do not show any shrinkage in the tumor after radiation. We recently read a story about a little girl that had a tumor very close to the same size as Deja's. After her radiation, her tumor shrunk 80%! Unfortunatly, she still only lived 7 months for the time she was diagnosed. Deja is a strong girl, and we are confident she will hang on. We thank God for everyday he gives us! You can see more stories of children with Brain Stem Glioma's at http://www.virtualtrials.com/btlinks/bios.cfm. We also got a special visitor today. Our Aunt Charlee from Indiana came to visit. She came to help out where she could and spend some QT with Deja. We are planning a very special weekend and we are very excited. |
| 11/07/2006 | Down to 10 treatments! Aunt Charlee left today. The girls were very sad to see her go! We hope we gave her lots of special memories. ;) We shopped, and dropped! (The Knox Way) We rode the carousel at the mall and played in the play area. The girls had a great time! Mommy even took some time and went out to dinner with the girls. We went to the Rain Forest Cafe! The girls love it there! Momy needed that time! Thank you so much for coming out Aunt Charlee, we needed a familar face! |
| 11/09/2006 | Special day today! MAKE A WISH came to talk to Deja about granting a special wish just for her. They brought dinner and lots of presents! The girls had a great time. What an organization! They asked Deja what she wished for, and her answer was, "Play Dough"! She is a very simple little girl! :) She eventually told them that she wanted to meet Cinderella at her castle. They talked about riding in a boat and seeing the ocean and dolphins. They mentioned a Disney Cruise! They take the next 3-4 weeks to plan her wish, so we'll see what they come up with. We are very excited! Thank you to our very special Make A Wish team! |
| 11/12/2006 | Again, thanks to April, we enjoyed another great weekend together. Yesterday, we spent the entire day out! We started with lunch at Peter Piper's! They donated a special gift certificate to Deja to enjoy a day of play. She had so much fun. Thank you to Peter Piper and April! We went from there to the mall again...to the carousel! Deja loves that thing. And then again to the play area. We went from there to Michaels were we purchased tons of crafts to make our very own Christmas decorations. We decided instead of our fancy christmas tree this year, we would have a tree completely decorated by the girls! So, because it is such a special Christmas this year, we decided to put our tree up today! The girls are very excited about Christmas! Another great weekend! |
11/12/2006| 11/15/2006 | Fundraiser Night! Two very special ladies organized a fundraiser dinner to be held in Deja's honor tonight. It was amazing! The dinner was sponsered by A Favored Affare Catering and Bistro, and organized by it's owner, Desiree Timberlake and her friend, Jan Vitale. We had a great turn out, and raised tons of money for Deja to do some of the things she wants to do. They had the place decorated in Pink and Purple, even the table clothes. There were pictures of Deja on every table. Desiree catered the dinner herself, and it was a delicious Italian dinner. We want to sent a special thank you to everyone involved in tonight, including Deja's Godmother, Brandy, and all of the vendors and volenteers who donated their time. Thank you also to everyone who attended and the for many donations. Please visit, www.favoredaffare.com. |
| 11/19/2006 | 3 treatments left! 3 more days! We spent a lot of time at home this weekend, resting up for Thanksgiving. Wednesday (Nov. 22nd) is our last day of treatment. Deja is very excited! She had to say goodbye to her favorite Anesthesiologist, Dr. Maze. We must send out a special THANK YOU to Dr. Maze. He is a wonderful man who is very good at what he does. He knew how to put a smile on our face even when there was tears in our eyes. He truly cared about Deja, and she knew it too. THANK YOU! |
| 11/22/2006 | NO MORE RADIATION!! Deja is done and is doing great! The doctors have even decided to start decreasing her steriods. It was a very happy day today, but there was still some tears. We had to say goodbye to the nursing staff at Banner Good Sam who has helped us through the difficult radiation treatments. They greeted Deja today with a special gift! They bought her a beautiful Disney snow globe, which brought tears to mommy's eyes, and a special book that I think we'll keep for "autographs" (hint..hint..). The radiation has a slow reaction, so we won't be able to see how much the tumor shrank for about 6-8 weeks. They have scheduled an MRI for January 9th. The more it shrinks, the longer we have, so as you can guess.. our prayers are full. Make A Wish! Well, we heard from Make a Wish today, and we are going on a DISNEY CRUISE! I am so lost for words! We leave on Feb. 10th! I took Deja to their website today to show her the kind of boat we were going on and she is beyond excited. I know that several people referred Deja to the Make a Wish Foundation, and we thank all of you and could not be more thrilled to have such a great opportunity! They have booked our trip for Deja, Olivia and I (plus the new baby) and one grandparent. We are doing what we can to gather the money for both grandparents to go. We'll see! I am just speechless! We are really looking forward to this! |
| 11/26/2006 | BIGGEST WEEKEND YET! We had a great Thanksgiving! We had many things this year to be thankful for. We celebrated at our house with a big Thanksgiving dinner! ** Thanks to a stranger, who sent us a Butterball gift check and a Fry's gift card.** No return address on the envelope! Who ever you are, we thank you! Then, thanks to a few special friends, we were able to leave Thanksgiving night for San Deigo, California. We spent Friday and Saturday in SEA WORLD! We even had breakfast with Shamu and Santa Clause, and had our picture taken in Santa's Sleigh! Deja says her favorite part was the sharks and the whales. Deja and Olivia even got to feed and pet a dolphin! I will update the site soon with pictures! We had a great time and want to thank Desiree Timberlake and the Robson's for making it possible for our family to create such a wonderful and lasting memory. Deja did catch a small Flu bug the last night of our trip, but the doctor said her ability to fight infection was great, and he wasn't lying! We had one long night of vomiting, but never a fever! Deja is home now and doing great! |
11/26/2006| 12/01/2006 | How can you top Sea World! Well, the Polor Express sure gave them a run for thier money. We left Wednesday afternoon to head down to Williams, AZ. Another excited weekend planned by our wonderful friend April. After receiving an email from April, the Grand Canyon Railway staff (and our angel Heather) gave our family a package to come down and ride the Polor Express. They provided a night in their beautiful hotel and even included dinner and breakfast in the wonderful Max and Thelma's restaurant..... where they serve the world's best coffee. We checked into the hotel around 4:30pm, and the manager was knocking on our door within minutes. He gave the girls a free photo package to have their pictures taken with Santa. There was even a HUG gift bag waiting on us with tons of gifts for the girls. Mugs, T-Shirts, the Polor Express book and movie, and much more! We were so overwhelmed! THEN THERE WAS THE TRAIN!!!!!! We stood less then a foot from the train as it pulled into the station. The look on the girls faces was priceless. Olivia stood with her mouth on the ground and Deja was jumping up and down in grandpa's arms with a huge smile accross her face. The train ride was amazing to say the least. They started us off with hot chocolate and cookies, and they read the book over the PA and the staff walked the book up and down the isle to show the pictures. Deja really listened too and even looked up at me and repeated parts. We then arrived to the North Pole, where we could see Santa through the frosty train windows. When the train backed up so we could see him again... he was gone! He had boarded the train. He made his way through the train cars one by one. He passed out Silver Bells to all the kids, just like in the story. We sang Christmas songs all the way back and Deja's smile never left her face. What an experience! THANK YOU to everyone at Grand Canyon Railway who had a hand in this. You helped create a once in a lifetime memory for our family that we will remember forever. Make-A-Wish Update! They have decided to include both grandparents in on trip. Unfortunatly, the baby cannot travel until it is 12 weeks old. So the trip will be moved to April. We ask for all of your prayers in helping insure that Deja is still healthy and in good condition to travel then. She is on her way, and doing great! |
| 12/07/2006 | No trips this week, unless you count the trip to the doctor. Because of the vomiting lately, they have decided to stop the reduction of the steriods for now. They will keep her at her current dosage for at least another week. (1mg in the morning, and again at night). She has started on Zofran (nausia), and is still taking the Colace (constipation) and Zantac. Because of all the colds in the air we've been giving her a over the counter cold medicine too. We did see a few of her side effects re-surface in San Deigo. She complained about a headache once and of her eye hurting. We thought we saw her "lazy eye" return a few times too, but since our return home, they seem to have disappeared for now. The doctor says that the radiation is still working, and will continue working for approx. 6-8 weeks since we finished. We are trying to keep an open mind and are still praying for a miracle. She is really doing great otherwise. Her mood swings are back in full force, but she has more energy then we've seen in quite sometime and she is even playing in her play room again! Her sister could not be happier that her play partner is back. Make-A-Wish Change! We discussed with Deja's doctor in great detail about the possiblity of Deja traveling in April. They said the decision was ours, but could not guarentee Deja would be okay to travel. There is a chance she would be placed on a flight restriction by that point. The other option would be to leave the new baby at home, but being that she would only be approx 12 weeks, that would be very difficult for mommy and I really want to create a memory with all of us! We contacted Make A Wish about our concern, and have decided to change the plans to a trip to Disney World! We will in early February. Everyone will be able to go, even grandpa. They have offered to pay for his airfare out of our spending money, and all we need to provide is his ticket into the park! We are very excited, and know that Deja will be too. |
| 12/09/2006 | A date with Deja's Grandma Matti, Aunt Tamera, and Cousin Dominique! We met for lunch at the Rain Forest Cafe in the mall, one of Deja's favorite places. We had plenty of time to share stories of our latest adventures! We had a great time and can't wait to see them all again! By the way.. New carousel at the Arizona Mills Mall! |
| 12/10/2006 | Make-A-Wish Christmas Party Today! We had so much fun! There was lots of things to do! Deja got to jump in a giant castle, and played lots of games. She even got to decorate her own cookies. When we asked who her cookie was for, she said, "Santa". Good thing he was there, because she was very serious! She walked that cookie right over to him when she was finished. He was shocked to say the least! He said she was so thoughtful, and earned her presents this year! Deja got to meet his wife too, Mrs. Clause, and even Scooby Doo, Tigger, and Minnie Mouse too! All the characters from Star Wars were there too, grandpa loved that most! We had an awsome time! What an organization! Thank you to all the volunteers! |
| 12/12/2006 | Doctor Day! Deja has been doing great, so her doctor decided to lower her steriods dosage. She was taking 1mg in the morning and one at night. They are now lowering her to 1mg a day! Mommy is a little nervous. If her symptoms do not return, then they will try to stop the steriods all together on her next appointment.. in 10 days! We also had some extra time today, so Deja and I spent some time together and went to see Happy Feet! Very cute movie, we had a good time! |
| 12/14/2006 | We received a email from a friend of Heather (Polar Express) named Charlene. She works for IMAX, and wanted to give Deja and her family tickets to see the Polar Express movie in 3D! So we loaded up the car today and Deja, Olivia, Papa and I went to see the movie! Charlene even had popcorn and pop ready for us. We loved the movie! The girls tried to grab the ticket in the beginning that floats through the wind. It was so cute! Thank you so much to Charlene, the IMAX, (and Heather) for helping us create another memory! |
| 12/17/2006 | Two Very Special Christmas Surprises! Aunt Patti had a new baby girl, named Indie. The baby was very healthy, and weighed 7.3 lbs. She is beautiful! Congrats! We also had a very special visit today from the Jaydee Lynn King Foundation.(www.jaydeelynnking.com) Our family was selected and adopted by an organization through the Phoenix Childrens Hospital, and their foundation came to deliver the gifts. OH MY! Ironicly, Jaydee was diagnosed with Brain Stem Glioma and sadly passed 7 months later in November of last year. Meeting members of this foundation was very healing for mom. They were very happy with how good Deja looked, and were very supportive of my decision of treatment. Thank you to everyone involved for helping make this Christmas very memorable for the entire family. |
| 12/18/2006 | One week till Christmas, and a very special Christmas at that! Today we met with Deja and Olivia's Godmother Brandy, her family, including her wonderful mom, Desiree. We shared some special Christmas gifts, and even more special Christmas hugs! The girls had a great time! |
| 12/19/2006 | Medical Update! Deja had an awesome doctor's appointment. They have decided to lower her steroid dosage to .5 mg per day. We decided to wait until after Christmas to make the change, just incase some of the symptoms decided to creep back. For the first time, we did not make a follow up appointment, but we do have to call next week to check in.. As for mommy, well I am on my way to having a new baby. Small contractions so far though! |
| 12/20/2006 | A Busy Day! We started the day off where Nana works, Schaller Anderson. Last week, the staff at Schaller Anderson gave our family a brand new Sony Handy Cam Camcorder, so that we could video tape Christmas and the arrival of the two new babies. So to show our Thank You, the girls hand painted Santa Sleighs and filled them with candy and went to her office today to deliver them. They had a great time and collected Christmas candy in their pockets as we made the rounds to everyone's desk. The girls were invited to McDonalds today in Gilbert (Queen Creek & Power) to meet Ronald McDonald! They recieved an email from April (surprise, surprise) some time ago and have been working toward setting it up. We arrived at about 2:15pm, and when we walked in, Deja said "I saw him on TV". She knew that he was there to see her! The girls spent over an hour with Mr. Mcdonald himself as he showed them many magic tricks at there table while they at their happy meals. The girls were presented with autographed Ronald McDonald toys and GOLD LIFETIME HAPPY MEAL CARDS. Yes, there was one for each of the girls. If that was not enough, they even offered to deliver the happy meals when Deja got to sick to come get them. We want to send a special thank you to the owner/operator, Catherine Sanchez, and all the other's that were involved. This is a one of a kind McDonalds, go see for yourself! We also were invited by the girls godmother, Brandy, and her Fiancée, Rob to enjoy a night at Chucky Cheese. The girls haven't been there in a long time, and Brandy and Rob made it a very special time! Congrats on your engagement! You two are the definition of soul mates and we love you both! |
| 12/21/2006 | Another very special surprise. We had a visit tonight from our friend Jan, who organized an adopt a family for our family through Tri City Plus Association of Insurance Professionals, Inc. Jan dropped off gifts of all kinds to the entire family. The donations and gifts were unbelievably overwhelming. We all know this Christmas is a very special one, and we thank everyone involved from the bottom of our hearts for making so memorable for Deja and Olivia too. |
| 12/22/2006 | It does not stop!!! When Nana arrived at work today, she was unable to get into her office. As if her company has not done enough already, they now filled her office with gifts to the girls for Christmas. Companies like this are very rare, especially large ones such as Schaller Anderson. They have proven that a little care to your employees goes a long way and makes a true difference in the organization as well. Nana had to call for special help to get everything home! I can't wait to see the girls faces on Christmas morning. Thank you to everyone involved.. To have so many amazing people in one place has to make quite a great place to work, at least that's what Nana says! |
| 12/24/2006 | Christmas Eve is here! The girls and I ended our night last night with a special visit from our friend Charolette who brought by several special presents for the girls for Christmas, and even a gift certificate for a Chrsitmas ham, from Honeybaked Ham! Charolette even organized a day (or 3) at Bouce U for the girls. We stayed up late and finished the night last night by making a gingerbread house (given to us by Vicki at Schaller Anderson). Please check back for pictures.. Today was a busy day too. We took a long nap, and went for a long drive to look at Christmas lights. We stopped at Aunt Patti's and Uncle Paul's to see the new baby and deliver Christmas Eve gifts. Then returned home to make special cookies from Santa. Mom was up late getting all the presents ready. We could not even walk in our living room. We can't wait until tomorrow! |
12/24/2006| 12/25/2006 | 3 hours to open presents! Merry Christmas to Everyone! Today was very overwhelming for everyone. There were lots of tears as everyone opened the special handmade gifts from Deja. Deja and Olivia were very overwhelmed. The gifts included, a great big play kitchen, a tricycle (which Olivia has not got off of), a red Ford Mustang Convertable (ok - it was a power wheel, mommy got that one!), lots of playdough, lots of clothes that were greatly needed, and even a Nintendo DS. Toys...Toys..Toys. There was even enough donations for us to have spending money on our Make-a-Wish trip. Mommy was surprised with a digital camera (NO MORE FILM) and a much needed one hour massage. The new baby was not left out either. Jovonne recieved everything from a car seat to wipes and diapers. Now all we need is a bigger house to put everything in! What an amazing day! Mommy finished the night in OB Triage. Such an emotional day lead to many contractions.. Although I was sent home, I am 50% efaced and dialated to 1 cm. They say the baby's head is very low. I think we are getting close! Deja says she is ready to be a big sister, and promises to help change diapers... even the dirty ones! :) |
12/25/2006| 12/26/2006 | Another day in OB Triage. Deja was a big helper today. My doctor's appointment was a biophysical of the baby, and she just would not budge. She scored a 4 out of 8, and they were concerned about her lack of movement. They sent me to the hospital to be monitored for a while, and of course, as soon as we got there, she decided to wake up.. They re-did the biophysical and scored her an 8 out of 8. Her heatrate is great, and her cord is out of the way. They were not concerned. |
| 12/27/2006 | Deja was interviewed by the East Valley Tribune, and will have an article about her journey in their paper tomorrow. |
| 1/1/2007 | Happy Birthday Aunt Patti! We celebrated the New Year with Family.. |
1/1/2007| 1/08/2007 | Mommy had to have an amnio today to see if the baby was ready for delivery. Deja went with me, and held my hand. She is not afraid of anything. The doctor was very impressed on what a big girl Deja was at helping. Results came back ok, the baby is ready, and I am scheduled for an induction on the 10th.. |
| 1/09/2007 | MRI DAY! Deja did great! We were very surprised when we arrived to find out we had our favorite doctor, Dr. Maze, as our Anesthesiologist. Deja trusts him so much. She took his hand and walked back with him and did everything he asked her to do. No tears, and no fears. She was a very big girl.. We hope to have the results by Tuesday at Deja's next appointment. |
| 1/12/2007 | Mommy was scheduled for an induction on 01/10/2007 at 7pm. It was a very slow start. They started the epideral when I reached 3 cm, but my blood pressure dropped, so the epideral was stopped shortly after. The affects of what they did administer wore off by 9 cm or so, and the rest was very difficult to say the least. I pushed for two and a half hours, and even blacked out occasionaly. It was my first natual child birth. Someone wanted me to remember!! :) Jovonne Jo-De was born early morning on Friday, January 12th, at 12:33am and weighed 6 lbs 12 oz. She was very healthy and mom and baby are doing great... |
1/12/2007| 1/16/2007 | Deja's follow up appointment... #1 - she is making her last decrease of her steroids. She will decrease from .5mg per day, to .5mg every other day, which will continue for a week, and then we will attempt to take her off it completely. #2 - Her MRI results show "moderate change" and "sigificant decrease in mass effect." The doctor says that this is very good news, and he was very happy with the report. The decrease shows us that we have more time with Deja. Mommy is doing my best to move on, but reality is setting in. I have asked that the Neurosurgeon look at the new MRI, just to make sure it is still inoperable. No word on that yet. |
| 1/28/2007 | Just checking in.. Every one is doing great!! We are very excited about our upcoming Make A Wish trip to Disney World. We got the information about our stay from Give Kids The World Village. Deja has decided after hours on the Disney website that she wants to ride a scary ride and a wet ride. Of course Cinderella is on the top of our list. |
| 2/13/2007 | We are back!!! What a trip! Every one wants details.. Well, we left on the 7th of February and were taken to the airport by limo. We arrived in Orlando, FL that afternoon at about 3:00pm where we picked up our rental van and drove to Give Kids The World Village, which is short 15-20 minute drive from Disney World. Upon check in, we received our park tickets which included 3-day tickets to Disney, 1 day to Universal, and 1 day at Sea World, as well as many options to other parks and attractions in the area, including the water parks and Kennedy Space Center. The Village was amazing. It was a park in itself and included a movie theater, a carousel, a putt putt course, and even a pool. They severed breakfast, lunch and dinner free of charge to all the guests, and they even had an Ice Cream Palace that severed ice cream from 8:30am to 9:30pm everyday. The village works in partnership with several wish foundations, so every guest there is special, just like Deja! www.gktw.org |
2/13/2007Rental Car Villa Ice Cream Palace
| Cont. | We spent the first day at Magic Kingdom. Deja's wish came true! She got to meet Cinderella and see her Castle too. The meeting was so exciting. They cleared the meeting room, and it was just our family invited in. At first, it was just Snow White and Belle. Then they covered Deja's eyes and in walked Cinerella and two of her mice.. When they uncovered her eyes, Deja let out this little scream. The smile was unforgetable! Mommy and Nana cried. She sat with Cinderella for about 25 minutes and they talked like they knew each other forever. I told Cinderella that Deja had thought about this moment for a long time, and had a lot to say. We also got to meet Mickey and Minnie (Olivia's favorite), Donald and Daisy, Chip and Dale, Goofy, Pluto, Mary Poppins, Wendy from Peter Pan, Pooh and Tigger too. Deja got to ride the Dumbo ride and the Tea Cups, which she has been waiting on for quite some time. It was an awesome first day!!!!!!!!!!!!! |
2/13/2007| Cont. | Day two we spent at MGM and Epcot.. Deja got to meet the Little Eistein crew and Jovonne (JoJo) got to meet JoJo from JoJo's Circus. We watched Disney's Playhouse Live, and got to stand in Bruce's mouth from Finding Nemo. Another memorable day! |
2/13/2007| Cont. | Day 3 we spent the day at Kennedy Space Center. Deja got to meet a real astronaut (which scared her a bit), and see a space shuttle. We also got to go to the beach. It was to cold to swim, but we let the girls play in the sand. |
2/13/2007| Cont. | Day four we started the day with swimming, then headed to Disney's Animal Kingdom. We meet mommy's favorite.. Lilo and Stitch! We saw saw the Lion King Live, and we rode an awesome dinosaur ride. Another great day! |
2/13/2007| Cont. | Day five was a repeat day at Magic Kingdom. We spent the day riding all the rides Deja wanted. We meet Jasmine, Aladdin, and Genie too, and even Ariel, The Little Mermaid. We ended our last day the best way we could... with fireworks!! Thank you for the memories Make A Wish! |
2/13/2007| Cont. | We returned home from our big trip on the 13th. We arrived home shortly after 2pm, and found our house full of angels. While we were gone, an organization called Room For Joy and so many volunteers that I cannot name them all, came in to our home and re-made Deja and Olivia's rooms. The smiles on thier faces were priceless, and neither one has left thier rooms to date. I will let the pictures speak for themselves. http://www.roomforjoy.com/ Special thank you to our sponsers for the room, Pat Scheppe and Family! |
2/13/2007| Cont. | The surprise was followed up by another big surprise... JoJo got sick.. She started vomiting the night before we left Florida. So after things calmed down the night of our return, I decided to take her to the ER. She was diagnosed with Pyloric Stenosis. It was explained to me that it was a muscle between her stomach and her intestine that suddenly "swells" and blocks the valve closed. It is fairly common, but mostly in boys. |
| 2/14/2007 | JoJo had surgery today, Valentines Day and the day after we returned. She has done very well since. She is trying to get back to normal just has fast as she got sick. She is eating slowly, but they say it won't be long before she is back to her normal feedings. We are being released tomorrow evening. |
| 2/18/2007 | Mommy is doing my best to remain sane. Olivia woke up the morning of the 16th with a temp of 103. She didn't have any other symptoms, and after a day of tylenol and motrin she finally broke it. Mommy needed some time off by the time today came though. Many of you will not agree, and you can blame it on the generation... :) but mommy got a tattoo today. It was done by the owner of Urban Art Tattoo and Piercing in Mesa, Sage. I wrote to him after the holidays and asked him for a quote on the tattoo, and he offered to do it free of charge. Sage has been awarded for his artwork throughout the west, so I was very lucky to get 5 hours on his day off at that! He did an amazing job! I would recommend his shop to anyone interested in getting a tattoo or piercing. It is very well organized and very clean. His entire staff his very friendly and professional. You can check out their work at http://www.urbanarttattoo.com/. (I will add Olivia and Jovonne's Face under this when they turn 4 years old. It is on my upper arm.) |
2/18/2007| 2/19/2007 | Jovonne followed up with her doctor today. They heard a heart murmur now. She will follow up with a Cardiologist on March 6th. They think it may be a small whole in her heart. Mommy has had enough. I know that there is a good chance it may be nothing, and I am trying to remain positive, but everything is starting to weigh on me. It is hard to hope for good news, when you are used to getting bad news. I think I need something for my nerves. |
| 2/20/2007 | Mommy and Deja both saw the doctor today. Mommy did get something for my nerves, and Deja's doctor was very pleased with her. All of her blood counts were great, and she has been off of her steroids since the end of January and is still symptom free. She has lost most of her weight, and is down to 37 pounds. She was scheduled for her next MRI, which will be on April 3rd. We will meet with the team of doctors on April 10th to discuss the results. It sounds as if we may see growth on this one. Mommy is trying to prepare.. if that's possible. |
| 3/03/2007 | Deja goes bowling!!! WOW! Cosmic Bowling! This was Deja's first time bowling, and she was a natural. We all had a great time. She had so much fun! She saw someone on her cartoons bowling and asked if we could go! It was worth every penny. Check back for pictures! |
| 3/06/2007 | Jovonne sees the Cardiologist!! The doctor does not think it is a simple murmur. He wants us to come back tomorrow for an echo. |
| 3/07/2007 | Jovonne again at the Cardiologist. Echo was done, and we had an immediate follow up with the doctor, and there is no hole!!!!!!! She has a functional heart murmur, and there is no follow up required! WOW! GOOD NEWS! |
| 3/12/2007 | Mommy at the Cardiologist. My echo is done, I follow up next week! |
| 3/15/2007 | Picture Day! Again with Portrait Innovations. I have to send a personal Thank You to Jenee and Carrie. Thank you so much for everything. I can never explain how important these pictures are to me and my family. We will cherish them forever. |
| 3/19/2007 | Call to the doctor..... I am afraid to tell everyone that Deja's symptoms are back. This is much sooner than we expected, and is happening very quickly. Within the last 7 days, we have seen the headaches, the dragging walk, the tilt of the head, and the mood swings. One by one they are reappearing rapidly. We have called the doctor, and will see him on Wed. They are a little worried to see this happening so fast. I think they were hoping we would get a little more time too. We promise to keep you updated! Again, the MRI is April 3rd. There is a possiblity this will be moved up, and if so we will let everyone know. |
| 3/20/2007 | Mommy's appointment with the Rhumatologist today. The signs are pointing more and more toward Lupus. The blood work is finally starting agree with all my symptoms. Next appointment should be interesting... and is next month. |
| 3/21/2007 | Deja saw her doctor today. They agreed that some small symptoms are returning. They do not think they are severe enough to restart the steroids. They will wait until her MRI to determine the next course of action, which is scheduled for April 3rd. Mommy saw the cardiologist today and will have a stress test done next week too. |
| 3/22/2007 | Movie Day with Papa. We went to see Charolette's Web at the local theater today. It was a grat movie and we had a great time with grandpa. |
| 4/02/2007 | Mommy's stress test went ok. Results are on the 25th. |
| 4/03/2007 | Deja's MRI was today. We had our favorite anaesthesiologist, Dr. Maze. Deja just loves him. He is such an amazing doctor and all of this (radiation included) would have been very difficult without him. She did very well getting to sleep, but woke up very compative. This happens some times. It took a little longer this time to calm her down though. She really did ok. Results next Tuesday! Even though she does show small symptoms, we are still hoping that the tumor has not grown since her January MRI. As you read in the journal.. we are enjoying our time! |
| 4/04/2007 | What next, right? Grandpa had a cadiac cath done today. They found two blocked arteries. One 95% blocked and the other 85% blocked. We were pretty shocked he was still standing, but they say his overall heart mucsle is very strong. He had a stint placed in one artery and will have another placed in about 2-3 weeks. Technology has advanced in some areas - a few years ago, and he would have needed bi-pass again. This is actually good news for us all. This is the second time they have caught a blockage this bad before he had a heart attack. Someone must be watching!!! |
| 4/08/2007 | Happy Easter! The Easter Bunny found our house and left the girls eggs and filled their baskets full. We had a great day! |
| 4/10/2007 | I think this is what everyone is waiting for. FOLLOW UP TO THE MRI. Unfortunatly I do not have much good news to share. Deja's tumor is showing growth since her January MRI. It is growing around the cerabellem (?) which is causing the loss of balance and double vision. It does show some growth in the brain stem, but has not reached the ventricals (which cause worse side effects) and the MRI did not show any swelling, which means she will remain off the steroids. The bad news is the growth so far has been on the rapid side, and even though every patient is different, they are guessing she has a couple months. This, of course, could also change rapidly. Deja, however is doing great! She has a few terrible mood episodes a day, which are difficult but expected. It was a very tough day for all of us. The hard part is that this news puts us into the planning stages. The months to come will be difficult, but we will do our best to keep everyone updated. Please pray that this time is peaceful for Deja. I will be happy to answer questions, just submit them through the contact page. |
| 4/20/2007 | Mommy Update - Mommy saw her Rheumatologist today. They finally have enough information to diagnose me with Rheumatory Arthritis. From my understanding, this is am Auto Immune Disease that effects the joints, which is why "arthritis" is in it's name. You can find more info at http://www.ra.com. The following was taken from there website: "RA is not a condition of wear and tear that occurs with aging or injury. It is a disease known as an "autoimmune" disease in which your own immune system mistakenly attacks healthy tissue, causing inflammation that damages your joints. Normally, the immune system fights against infections and keeps a person's body healthy. However, in the case of RA, the immune system attacks cells in the joints, causing pain and swelling. Over time, people with RA often find that their joints are stiff and do not move properly, causing them considerable pain and discomfort." This may later lead to a Lupus diagnosis which occurs often as the symptoms can appear in the blood over time. While this is devistating news, mommy is actually quite releaved. She is just happy that she can begin treatment and hopefully start to feel better soon. |
| 4/24/2007 | Deja's doctor - Deja saw the famous Dr. Etzl today. He saw that she is having increasing trouble with walking, and even having some trouble with her overall coordination. We have decided to order the wheelchair. Mommy was a little sad, but Miss Deja's first words were, "I get a special parking space." What can I say!!! Overall, the doctor was very happy that Deja was still 'stable'. She is learning to adjust to the changes just like I expected her too. Since her balance is off, she has a lot of trouble keeping steady. If she feels like she may fall.. she drops to her knees and stays close to the ground until she feels ok to stand. And when she climbs the stairs.. if she feels unsteady walking up.. she crawls up. She has learned to compensate all] by herself. She is so resilient, and is determined on being independant... like mommy. :) |
| 4/28/2007 | Deja Day! What a day it was! There was cotton candy, popcorn, hot dogs, even an inflatable jumper. We had approx. 250 guests. Deja had such a great day and there is no doubt that she forgot about being sick. My goal was to make her smile, and there was plenty of that. Our favorite doctor, Dr. Maze, even made it out. For thoughs of you who missed it, there was also an article in the Arizona Republic today. It was an amazing article written by Laurie Roberts. Click Here for the full story at AZCentral.Com. |
4/28/2007| 5/08/2007 | Another Doctor Day! Not the nicest day today. The doctor did confirm Deja was declining. She is no longer able to walk without assistance. She is having a lot of trouble with her right side, even her right eye. She is very shakey and has a lot of trouble using her right hand, which means she needs help eating and drinking. Deja is handling it the only way she knows how, by being brave and couragous. She gets very frustrated with herself, but she is a very indepedant 4 year old and really wants to do things herself. She is getting used to the idea of asking for help. We are using the wheechair and they have also changed Deja's medication again. Deja's headaches have continued, so they have added Morphine to our medications. Deja has also had a few episodes of chocking and vomiting. The doctor is always hesitant to give a time frame, but we know that the decision is made by the Lord. Dr. Etzl says it could be days or weeks, whenever Deja is ready too. Please keep us in your thoughts and prayers, and thank you all for checking in with us. |
| 5/14/2007 |
Deja has had a few really good days. So today, we ventured out with Papa and Olivia and took Deja |
| 5/24/2007 |
Another Doctor appointment. The doctor did not have much to say today. We reviewed her symptoms |
| 6/01/2007 |
Today is a Great Day! 8 months ago, we can honestly say that we did not know where we would be |
| 6/05/2007 | We have had a rough weekend. The hospice nurse was here yesterday and tells us Deja is not doing well. Deja has already had some problems with her right side, but now her left eye is not responding. Her pupil does not respond to light, it remains very large. Also, Deja has a very irregular heart rate. Nana monitored this throughout the night. Deja's heart rate continued to be irregular, and her breathing is very loud and wheezy. She turned toward me in bed at about 5 am and vomitted, but never woke up. We have had family here most of the day today. We are sad to say we might be running out of time. |
| 6/10/2007 | We had a pretty big scare last night. We were all up until 4am. Deja stopped breathing a few times, but started back up about 20-30 seconds later. Hospice was here, says her breathing is very shallow, but was regualr for the most part. We are still praying, just about every minute it seems. She slept most of the day today. When she was awake, she ate a little but was spacey for the most part. She ad a nice bath and we did her hair pretty. I offered to paint her toe nails but she couldn't sit still. She is having difficulty communicating and talking so we have come up with a pointing system. It works well most of the time. Hospice told us 5 days ago we probably only had a few days at best. We are thankful for everyday! |
| 6/11/2007 | Today, I was invited to a very special dinner with the ladies from Tri-City Plus Association of Insurance Professionals, Inc. Unbelievably, they invited me because they wanted to do even more for my family. They gave my family another gift that will help us in many ways. This is an amazing organization and I had an amazing time. Thank you! |
| 6/17/2007 |
Many of you have called or written for an update on Deja. Unfortunately, there is not to much to |
| 6/28/2007 | There really is not much to update you on... Deja continues to be very strong and refuses to give up. This makes 4 weeks since hospice told us 1-2 days. What can I say!! Some of you have asked me many q uestions.. I will try to answer some of them today for you. 1-Deja is still very aware. 2-She speaks very little. Most is very difficult to understand. 3-She eats like a bird. A few bits of the lunchbox size Dole cups of Manderine Oranges and a few swallows of 7-up a day. 4-She recognizes everyone, but wants mommy almost all the time! Deja is only awake for about 2-4 hours a day. She is very lethargic when she is awake. She tries to talk, but we have a lot of difficulty understanding her most of the time. We have worked out a "pointing" s ystem. It helps sometimes, but other times she is just to weak to move. Bath time has became her favorite time, so we do it everyday! She is too weak to hold her head up, so we do a kitchen sink bath. She loves her hair washed with the sprayer and the lotion. I always show her herself in the mirror when we're done and she gets her nails painted 2-3 times a week. We change out the color and add stickers! Sometimes I get a little smile. Mommy has had a rough couple days. Deja asked me a few days ago "what was gonna happen to her." Answering that question was by far the hardest thing I have ever had to do in my life. The answer I gave was all things we have talked about before, but I think the question is what made it so hard. I told her Jesus was waiting on her, and as soon as she took his hand she would feel better right away. No more medicine! Someone once asked me if I regreted any of my decisions medically. I have to say that some times I have struggled with this question, but I always come back to the same answer. I will control the things that the Lord lets me control, and I will leave the rest to him, and trust his decisions! I do what I think is best for Deja, and no one else, not even me! I make sure she is comfortable, make sure she is loved, make sure she is not scared, and make sure she is happy. My decisions are well thought out and I have made them with no regrets. So far, I can say that I wouldn't change a thing. More then anything, I am greatful for the bond that I have created with Deja. I look forward to creating that bond with my other children. Someone else asked me if Deja was in pain. I am happy to say that I think we have the pain under control. We deal with an upset stomach from time to time, but a little Zofran stops that. She is alert enough that we still believe she can tell (or point) us when she is in pain. Her morphine dose is every two hours. I hope I answered everyones questions. Thank you again for keeping us in your thoughts. Please see the home page for our big announcement. We would love for all of you to be a part of our first project. Check out the special song written just for Deja. Organized and funded by the Songs of Love Foundation! |
| 7/04/2007 | HAPPY 4TH OF JULY!!!! Today is a great day! We just can't believe we are here and that it is JULY!!! If you would have asked me a month ago, I would have told you realisticly.. I think July might be out of our reach. BUT NOOOOO.. Deja would not have that! You know her 5th birthday is August 20th, and I wouldn't put it past her. She's Amazing! We had a good 4th of July. We were afraid to leave the house, but to our surprise, we were able to see the fireworks at Schnepf Farms from the drive way. We had a pretty good view too. Deja even managed to get a "WOW" out! |
| 7/06/2007 | There is no change in Deja's condition. She remains brave and strong. |
| 7/11/2007 | Deja had a very tough weekend. The pain in pressure in her head is back. It finally worked it's way through the morphine. The hospice nurse was out Saturday to raise the dosage. Unofortunatly, that comes with a few down hill days. It's just been a lot of sleeping and a little restlessness when were awake. She's still here and quite amazing. Today, we were surprised with another article in the Arizona Republic written by the very talented Laurie Roberts. For those of you that do not live close, here is a link to the article on AZCentral... http://www.azcentral.com/news/columns/articles/0711roberts0711.html and Here is the link to a short video.. http://www.azcentral.com/phpAPP/multimedia/flash.php?path=rtmp://azcentral.com/news/azr/0711deja_r&HTTP_REFERER=http://www.azcentral.com/ |
| 7/18/2007 | We have had a few bad days, and have much to update. We started with a really bad weekend. Deja had a lot of trouble breathing. On Monday, the 16th, we had very bad lung sounds on the left side. It sounded as if she was aspirating. Tuesday, we started continuous care with hospice. We were told she probably had pneumonia and there were signs her kidneys were failing. We had a very rough night Tuesday night, thought that would be it. Her heart rate shot from 80 to 160 and respirations went from 14 to 30. They usually see a spike, then a quick fall... Today, we had another visit from our pediatric hospice nurse. She confirmed the pheumonia and kidney failure and said Deja would probably not wake back up. They have increased her morphine just to cover any pain she might have and have called for a seizure med because they usually see a few in the last days. We are looking at 1-2 days. I know I have said this before.. almost 2 months ago. We are on Deja's time. Please keep us in your thoughts. |
| 7/23/2007 | I know that all of you are waiting to hear what is going on. I am running out of words, and don't really know what to say anymore. Deja is still here. She is just so strong. We still have continuous care in the home. Deja has not had anything to eat or drink for 7 days now. Last Monday, we tried to feed her some pudding and 7-up, but she aspirated almost all of it into her lungs. The doctor and nurse explained that we reached a point that we are really no longer feeding her, instead, we are drowning her with her food. They explained that even a feeding tube at this point would aspirate into her lungs.She has been pretty much unconscious for the last several days. She turns her head toward my voice when I speak in the room, and she tightens her hand around my fingers when I hold her hand. She shocks the nurses with her quick changes in heart rate and respirations, going from 180 bpm at one point, down to 65 bpm with in a couple hours. She now gets meds every 1/2 hour to keep her relaxed and free from pain. She looks very comfortable and relaxed. The last 3 nights have been all nighters, but still she pulls through every night. I spend most of the day and night reading her books and talking to her about Heaven. On Friday, the 20th, we decided to celebrate her Birthday. Her real Birthday is on August 20th, (she'll be 5), but we really wanted to celebrate it with her. She responded a little, and seemed to open her eyes. Later, I held her and asked if she liked her party, and she gently shook her head yes. A few minutes later, I asked if she was ready to go with Jesus, and she shook her head yes again. She hasn't been alert like that since then. Every day comes with more worries. She runs the risk of her brain herniating toward the spine, and faces the possiblity of siezures. We are so thankful for everyday, but are so afraid of watching her go thtough anymore. We promise to update the site IMMEDIATLY when she makes her journey. Thank you for all your support. |
| 7/25/2007 |
Deja joined Our Heavenly Father tonight. She passed at 6:10pm. She went very quickly and |
| 8/3/2007 | Please check back.. Video of Memorial Services to be added soon. Click here to help us start our non-profit foundation for Deja. Click this button and look for the "continue" link. 'width' is a duplicate attribute name. Line 1, position 36. See www.DejasCrown.com for fundraiser info to see where your donation goes. |
| 10/8/2007 | Mommy Tattoos - Fox 10 News, turn your volume up.. click here http://www.myfoxphoenix.com/myfox/pages/Home/Detail;jsessionid=BDDE5152806 BCFC40526770238FD559E?contentId=4549579&version=2&locale=EN-US&layoutCode=VSTY&pageId=1.1.1&sflg=1 |
| 4/24/2008 |
WE ARE INCHING CLOSER TO THE 1 YEAR ANNIVERSARY OF DEJA'S PASSING. |
| 7/25/2007 | Thank you everyone for your love and support throughout the last year. This has been very tough for me. There has been much emotion building up to today, but it is all your love, thoughts, and prayers that will carry me through it. As most of you know, I am very bad at Thank You's, but today, I would like to thank those of you closest to me. Thank you Patti, my sister, for listening to me even when I have bad timing. Thank you Mike for dealing with my emotional highs and lows this last year, and for helping out so much with the girls. Thank you April, Brandy, and Alayna for reminding me what true friends are. Past..Present.. and Future, Thank You! Thank you to all of you at US Airways, you too have had your share of emotional days from me. The compasion and understanding you show makes you the greatest employer in the world! Now, for the big one.. THANK YOU TO MY FATHER AND MOTHER! There will never be enough thank you's for everything you've done. Except, maybe, if I let you get out of house! :) Nobody knows patience more then you two.. yes even you Dad. I wish I could share with the world how much you both mean to me. You are truely amazing poeple. I hope one day I could give my children everything you have given me. Today will be a day for the family, doing the things that remind us of Deja. We will send her up some baloons, write down our favorite memories, watch her videos, sing her favorite songs, go ride her favorite carousel, and finish the night at her favorite restaurant, The Rain Forest Cafe! Today, I will remember all of you to. All of you who made a difference in my life, and Deja's life. All of you. Thank you! |
