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Sunday, December 30, 2007 0:06 AM CST
Monday December 31 2007 5:10pm CST
Hi friends,
Brandi asked me to update the website for her just to let you know that things with Maddie are still about the same. Last night she asked to sleep with her oxygen on, and when she got up this morning, she sat up and turned the tank off herself and took her mask off :) She is sleeping most of the day and still gets up to play for a few hours in the afternoon/evening. I know the Beamons are so encouraged and uplifted by all of your prayers and sweet notes on the guestbook...thank you for loving them and loving Madelyn so much!
Mylissa Horrocks for the Beamon Family
Just a quick note to let everyone know what is going on with Madelyn. Last night we went over to St. Jude because she was showing signs of struggling to breath. When we got there her oxygen level was low. They started oxygen and after a little she began breathing normal and her heart rate came back down. Then we tried taking off the oxygen and her oxygen levels stayed up on their own. We then decided to come on back home instead of going inpatient. The doctors there said if we had any more problems come back. They were great and efficient as usual. I am so thankful for the Doctors and Nurses there at St. Jude. Not only for them, but all the staff there at St. Jude. We are thankful for each and every one of them. She has slept most of today, she got up late this afternoon for a few hours. Again tonight she had a spell with her breathing. We have an oxygen machine in our home now, so we put that on her for about 30 minutes and she said she was feeling better and that she wanted her oxygen off. So we tried it and she was fine and went on to sleep.
Neal
Tuesday, December 25, 2007 9:47 PM CST
Sweet Christmas blessings...
We are still hanging in there! The kids could hardly wait for Santa! Maddie insisted that we wake up when it was still dark to open presents like we always do she said! You see usually we are at Neal's parents and we wake around 5AM for the much anticipated Christmas morning rush! Anyway, this morning was no different in that respect! Maddie rolled over asking dad if Santa had come yet, it was 4:30AM! He said he tried reading her a story til she fell back to sleep for a bit and he fell asleep himself then she nudged him to lets all get up!
I started the coffee and then went to wake Ella for her very first Christmas! She raised up looked around then put her head back down to sleep so I rubbed her again and she was up on her feet quickly! She of course liked putting the boxes up over her head more than the gift! Maddie let dad hold her while she opened her many gifts! She was very happy that Santa sent just the right tea set! Then she wondered why he sent her two of them as one was a princess set and the other a fairy set! We told her Santa must want her to enjoy many tea parties with many more of her friends! Soon after opening gifts the boys were off playing Tyler's Guitar Hero III while us three girls took a nap! Then after Ella woke dad took care of her while Maddie and I slept another three hours together! WOW! We must be in need of sleep! Around 5 o'clock Maddie sat up on the side of the couch wanting us all to play Bible Bingo and has been up playing with all her new things ever since!!
The Horrocks' brought us Christmas dinner tonight (thank you!) and Maddie for the first time in over a week wanted to sit at the table and she ate a couple of bites of potatoes and didn't like the taste of the corn and ate two bites of a dinner roll and drank cream soda! She is walking around the tree looking for certain gifts to play with and walking to the bathroom and back with the help of dad of course! Tonight she has been as active as I've seen her and If I didn't know she was dying you wouldn't think it tonight! The only disappointment with watching her tonight is that she will have nothing to do with me and it hurts watching her react to my voice, my touch, even my presence. She will tell me she loves me but without affection. I can't imagine WHY she could be doing this after 4 years of selflessly taking care of her every need, want & desire. It breaks my heart to pieces. I know it's not her and that she must be trying to protect me in her own way...God only knows how much I desire to make this all better for her. Please pray that God work on our hearts as we spend this most precious time together.
Last night Tyler enjoyed a Sounds of the Season Christmas Jazz production with the Horrocks family! MAddie had her friend Taylor here when she wanted to sit up and started to play with her Hannah Montana wig and Barbie Guitar! Then when Tyler was dropped off she ask that Bella, Sam and Iziah come in as well! They baked cookies and we all had a big tea party in the living room! It is nice seeing her be able to be up and active! What a wonderful Christmas gift for all of us indeed! To our Heavenly father, we are thankful and rejoicing!
Maddie still continues to have fever today so after asking her about going to St Jude for labs and getting hooked up to an antibiotic and coming home she said no and then said she did not want to go back to St Jude. She said she just wanted the nurse to come in the morning so that is what we will be doing in the AM as my concern is this. Though she is considered terminal on Hospice, I will never give up HOPE that this cancer inside her is not reversible by our Father. We feel we should at least check for infection and treat anything that can be treated! The one thing we worry about with that is the more labs and blood we take from her the less she will have since her body is not producing the amount she needs. By the way, her labs yesterday were Hemoglobin was 8.6 (alittle low) we usually tranfuse at 8, her platelets were 56K we usually transfuse at 20K, and then her ANC (immune system) is 3600 normal. More importantly, we were checking platelets as we would like to see these given when needed.
I am hearing Maddie still awake playing and talking as daddy is sleeping!
I hope you all had a wonderful Christmas! Please never stop hoping & praying for a miraculous healing for Maddie!
love,
Brandi
Tuesday, December 18, 2007 9:37 PM CST
UPDATE SUN, DEC 23 11AM
It’s been six days since we found that Maddie’s cancer is all over and five since making the decision of going home. We are right across the street from the hospital so I have peace in knowing that we are stil clos enough should we need to go in but currently we are home on Hospice care. I can’t say that it’s the most comfortable choice as I miss the hospital staff tremendously already-I can’t even tell you this without crying. Here’s the deal, on Wed the 19th, Mrs Barbara who is now our “home” nurse came to our home. Maddie was not happy with a new nurse coming when I told her about this lady coming but after telling her “she is a St Jude nurse that will be coming to our house to get labs done since she feels bad and because it’s getting so cold outside!” Then she was ok with her coming and she let her listen and look at her with ease!
Maddie has always LOVED St Jude and knew by going inpatient she would always get better! I am so very thankful to all the nurses who cared for our sweet & sassy little girl! Wise beyond her years and FULL of an imagination! Always looking forward to her crafts from Miss Jenny and then staying up til wee hours in the morning playing with the night nurses! I know they loved having something to do at night and it really helped our family and Maddie connect with many more faces that made her feel special and loved! My heart aches for Dr Furman, Mrs Sandy, Dr Hartford (our fellow who moved to Chicago), Dr Morrison, Dr Raja, the researchers for Maddie and all the nurses who have cared for her many times over as they anticiapate the loss of another brave soul. It is frustrating that after so many years of researching NB that they are not any closer to a cure. This battle has been long and tiring but does not come without saying that we have learned a great deal about being a better parent, a better person, and the importance of family and friendships! It’s about commitment to a cause that is important in your life and that life comes a voice that can be heard to the other side of the world! I created this webside for Maddie’s story to be told and I will not stop letting her spirit shine and her voice ring clear…. She wants to live, she wants so much to play with other children , Children bring so much JOY into your life and fill our hearts with an undying spirit of gladness. Theses past four years with Maddie has been FULL of LIFE! She always wanted to GO, GO, GO even if just leaving the hospital in a physical therapy chair! She would always want to go to Huntingdon but not tell anyone she was coming so it would be a surprise! She couldn’t wait to get there and ride her Barbie jeep and make mud pies or cakes with flour and water! She loves having her nails done, Wed evening she ask me to paint her fingers and toes as she lay there with her eyes closed. They are a medium pretty pink color that she picked out of course! She is so independent wanting to do everything herself and in her own way so If you wanted her in a certain outfit, you better say another one or she would just tell you she would pick it herself! She said it in a polite way though as she never liked to hurt peoples feelings and still as frail as she is now she is still using that same sweet attitude and spirit! Early yesterday morning she needed to get up and go potty and as I got up to help her she shouted NO! I can do it! But she had a bag to carry and Grandma Sherry was on a twin air bed in the floor but she insisted I not help her but soon realized with Grandma now up beside her that she needed her to help her to and from.
We have had Neal’s parents, his sister and brother in law, & their 3 boys here with us this week. We have had some company during the week as well but for the most part Maddie isn’t accepting of the company but for whatever reason it is mostly kids that she does NOT want to see or them see her. So we have had to say that we will call you should she ask for a certain friend to come but she has just said she wants NO kids at all to come. I am so sorry as this is just not the fun loving Maddie who couldn’t wait for her pajama party at Once upon a time and the sleepover here at the house that she was so looking forward to this past Thursday. On Monday on her birthday, while in the clinic room she looked over and told me she didn’t feel like having her sleepover but was going to have her party! She said she wanted all her friends there with cake and lots of balloons then they could go home…(You see she knew she could not have her choc brownies there so she said she wanted white cake for all the other kids-wasn’t that sweet and like most kids she would love to take balloons home and set them around just to look at them even if they were filled with air and on the floor by the next day she insisted that I NOT throw them away! She was very adamant about them not getting loose as well and would shout to watch her balloons if you opened the back glass of our vehicle! But then on Wed morning she looked up at me with a soft voice and said, “mommy I don’t want to have my party this week, I’ll do it another week.”
Maddie has been sleeping in dad’s arms or on the couch for the entirety of the week except for about 3-4 hours when se has felt like occasionally getting up to have a tea party! She has had a huge fascination with tea parties lately. When she sat on Santa’s lap this Christmas at the Oak Court Mall, all she ask Santa for was a tea set. Santa ask if that was all she wanted and she said YES that’s all I want. He leaned over at me when she had gotten up and told me what she ask for and what she said. I thought it odd being that kids nowadays including mine, I’m guilty, seem to want everything they see therefore the lists are usually long detailed and fulfilled! Besides what kind of tea set and where did she see this perfect tea set that she would want only Santa to bring? So discreetly we ask her these questions different times. First we got that it’s glass (porcelain) not plastic, it has princesses on it but none were found at the Disney store even . It was/is important that Santa bring the perfect tea set! Then on Thursday evening after picking up a friend of Tyler who was spending the night and my dad here visiting from MO, she said I saw that teapot I want Santa to make and bring to me….“It’s at that place with the cup, with the bubbles coming out and the stick in it”, she said after a little struggle of us guessing and her trying to get it all out…Finally after racking my brain of places we go, I said Walgreens? And she said yeah that’s where! A relief came over both of us as we struggled with where she must have seen this most perfect tea set! HEHE For all the kids out there reading this I am most CERTAIN that Santa has this taken care of ! He has been notified and taken care of! This is the most fun part of Christmas and one of our joys !
Over the past week, she has received a few tea sets and we have all enjoyed a few tea parties with our sweet Maddie. Miss Donna came and she and granmonna, and dad had tea then when grandma Sherry came with a baking set with cookies she was up at her kitchen using her little red chair from her art desk just baking away. She ask dad where that red tissue paper was that she had seen before and used that as her table cloth laid a top a daddy’s new rotisserie box. She used her pink stripe towel as a table runner, lined up her two new tea sets, another given by her friends Callie and Madelyn, and we all dressed up in tutus, feather boas and a special hat and all enjoyed tea and cookies along with many of her Build a bears!
She has not eat anything for the past two days not even a bite of yogurt since Friday. She has only wanted chocolate milk or ice water once and even that has been less often. We know that you can go about a week with no food and only about 3 days without drink. She is getting her IV fluids and we had a call into Hospice yesterday with no return phone call but again this is God’s work so I am not upset but I am calling again today as I would like to get her platelets checked. I think I am just tired myself and I am thankful to be at home with her surrounded by our family who has surrounded Madelyn with love since the day she was born. We have been supplied with a huge cooler of drinks and ice for us and company by our friends , the Montgomery’s and our small 4 top table has been broken down and replaced by a long 8 top banquet table and folding chairs blessings of our friends, the Horrocks’. Theses have been seemingly small but significant blessings to have during this time and we thank you for your love! We have been showered with phone calls, emails, and cards and we feel so very blessed to have you! Neal and I stayed up til 4AM Thursday evening reading ALL the guestbook entries as you have poured your hearts out to us and shed tears with us. I can’t say that it was easy to read cause it most certainly was not but you can rest assured that each and every word you send will be read and in time I will talk with you and I will thank you hopefully in person so that I may give you the biggest hug for loving us!
I know I have wriien a book this morning but now I must go as Maddie is up talking in the LR and I must go and be with her! I will update when I can! Just 2 days til ChRiStMaS!!
Still believing in Miracles!
Brandi
SAT, DEC 22 9PM
I received this tribute to Maddie today and thought it very special and wanted to share it with you! I will update very soon with some happy stories! Things are about the same...
In my Mothers Eyes
(adapted from Martina McBrides In My Daughter's Eyes)
For Madelyn Beamon
By Laura Ownby
In my mothers eyes I am a hero
I am brave and strong and I love so dear
But the truth is clear to me
I was special to her you see
Without her I'll never be
In my Mother's Eyes.
In my Mother's Eyes
Everyone is loving
Prayers turn to answers
as she watches me sleep
This miracle god sent me to
Gives me hope when I'm blue
I find everything to be true
In my Mother's eyes.
When she holds my hand and locks fingers
I feel warmth inside my heart
Everything becomes a little easier
I realize what love is all about
It's being there when your heart is torn in two
Hugging me close, cause there's nothing else to do
I've seen the world
Through my Mother's eyes
In my Mother's eyes
I can see the future
A reflection of sadness at losing me
And tho shell go and someday breathe
Seeing me In Ella maybe
When I'm gone I hope everyone see's
How much love she gave to me
For I'll live there
In My mother's eyes.
TUE, DEC 18 9:37PM
I will try my very best to describe the past couple of days as they have been deep in thought and emotion...Yesterday our little girl celebrated her 6th birthday. She got a trunk full of Groovy Girl dolls (19 of them) along with the horse and scooter, a Candyland-Memory game for her Gameboy SP from Tyler, a Cheetah girls outfit for her Build a Bear, she has received numerous cards, a sucker Bouquet from her Angel Judy from PA, a reindeer webkin and carebear from friend Elisa, hat and butterfly craft from friend Bella, a singing reindeer from Miss Donna, digital camera from Grandma Sherry and many other surprises she has yet to open! She is opening gifts as she feels up to it!! Thank you to everyone who has blessed our sweet girl with your love!
However as noted earlier she has not felt like playing or getting off the couch or from daddy's lap where she has spent most of her time since about Saturday.
We did have a scan done of her lower jaw yesterday. We went into clinic this morning with the anticipation of going inpatient for five days and starting Cisplatin and Etoposide. however...this morning I had a totally different feeling come over me as I was getting ready for the day, I mean I stayed up til past 2am scrapbooking thank you cards, wrapping a gift or two and packing for the week long stay.
We got Maddie's scans back. Her MIBG lights up all over. Her bone marrow is covered now 80 percent (again). This is the same as when we first started at St Jude in January 2004. The area in her jaw is tumor also. It is near the proada (sp) nerve most likely causing the tingling in the lips and chin. We are devastated. We are numb and we are hurting. Maddie has been sleeping for the most part. She is getting Dilauted for pain at 1 and a half mls every 4-5 hours. She is sweet as long as you don't touch and if you talk softly. She doesn't want loud noises or much social interaction. She hasn't let me hold her but once since Saturday which has been a bit painful for me being that I'm all se has normally ever wanted when she's sick or hurting but I think she senses something is not right and that daddy is strong and protecting! I do feel comfort in that respect. She always says Daddy is the strongest, smartest person she knows..besides God! He has told her that many times of course!!HEHE
In clinic this morning we got the consents from Dr Furman and while looking at the words GCSF shots, neuropathy, and the list of side effects my stomach cringed and a felt sick just thinking about the past four years of treatment and what our little girl has experienced in her innocent little short life. I looked at Neal [again] asking is this fair to her? Are we putting her through more chemo, more pain for just a few more months? The selfish side of me was in FULL force yesterday when presented the option of going inpatient. I could not imagine life without and still can't...but I have to put HER first and not myself. Our Maddie has suffered with this disease for nearly 4 years. It has been a constant struggle trying to keep her cancer away and we managed to get more time than was originally estimated. I am thankful for her love of Jesus and her love for family and friends. She is a very loving little girl and so very loved herself. She is absolutly amazing and I am so thankful to the Lord above for allowing me to be her mother and being able to take care of such a wonderful and beautiful spirit. She has taught me so much about life and giving and what it's like to be a PRINCESS!!! We love her so much and I want to thank you for loving her too!
God's love is amazing!
Maddie has had a fairly good evening as Neal's parents and sister are here. We have played Pretty pretty princess and she even wanted some pictures taken of her in her jewelry, feather boa and the HUGE birthday balloons given to her by our wonderful D Clinic staff!
Her face is getting puffy and her left eye alittle weak. She and Tyler are now playing beautifully together playing her new Candyland game! I have talked with him tonight and he seems well! He wonders if there is just something more to help her as we all would want for her but there simply is nothing short of a miracle at this point. He is a great reminder that God is Good as he tells me of all her friends who will be waiting for her! Oh this is so painful...
We've been told a couple of weeks is what we have left with our precious princess Maddie.
please pray for her pain to be managed, pray for peace and God's perfect timing as we deal with the timing of the Christmas holiday, pray for strength to our family and those who all mourn with us, pray for comfort for Maddie and that she not suffer during this most precious time with her.
love,
Brandi
Monday, December 17, 2007 12:10 AM CST
HAPPY BIRTHDAY!!!!!
Today is Maddie's Sixth birthday.
She is not feeling well today at all. We got up this morning and she wanted to open gifts. After they was open she was done with that and just wanted to sit in daddy's lap. That is where she stayed most of yesterday. She got up for a little bit last night and played but then it was back to laying around. We are suppose to get scan results today and also get another CT of her jaw area, where she has been hurting this weekend. Hopefully we will be starting chemo tommorrow. Please pray for good scans.
Saturday, December 15, 2007 12:34 AM CST
Just wanted to jump on here real quick and let you know that all scans are complete as of Friday but we have no information yet. We have clinic on Monday (Maddie's 6th Birthday!). We hope to hear the news we've been waiting for for 3 and half years now...Cancer Free! What a Birthday wish that would be! In reality we can only hope that this cancer has not spread since last scans just one month ago so that we can move forward with a treatment plan. We KNOW that God is in control of this entire situation~just keep BeLiEvInG!!!!
Maddie has been feeling pretty good all week with the exception of some left jaw pain that started yesterday and some left groin area pain at night. We have given some Codeine and Dilauted this week for the pain depending on how severe she says the pain is.
Thursday night we had a christmas gift exchange and fellowship with the ladies from our church and what a fun time we had!! Thanks Betsy for the invite and special evening! It was so great getting to spend time with everyone there~I really needed the night out!
It seems the Christmas holidays are so hectic with so many things to do and see! We just love it but we need some SNOW down here!!! Last night after a long day at St Jude for the past two days and a 2-3 hour nap, we got the kids nice and warm, grabbed some blankets, our santa hats and headed out at 9pm til midnight looking at lights, singing christmas carols and getting ice cream! Ella slept through it all!
it reminds me of last weekend when Miss Donna was at our house Maddie decided she wanted to eat dinner outside. So we took our dining table outside along with the chairs, we put a white sheet over the top and then her princess blanket on top of that for color, we put blankets and pillows under the table for her to sit in the "tent" as it was just alittle chilly but not too bad to be out. She brought out her radio and her princess nightlight and whalaa, it was dinner under the stars! FUN(ny) times!
OH speaking of funny, here's something hilarious...Yesterday we were sitting in the Med room getting her monthly IVIG medicine, she and dad were coloring reindeer and she ask dad, "How do you spell Onstupid?" LOL HEHEEHEHHE...We just looked at each other smiling then ask her, "do you mean Cupid?" How funny is that?
Well I need to go for now so we'll check back in on Monday and let you know how things go with clinic! Pray & Believe!
Love Brandi
Saturday, December 8, 2007 10:19 AM CST
Hello to all!
I am so excited to report that for the past week beginning last Sunday through this Sunday (tomorrow) we have had someone praying for us every hour of the day for seven days!! Our church at Sycamore View set up a week long prayer vigil for Maddie and our family~what an awesome feeling to know everyone is behind us HoPiNg & praying for the same blessings for our family! We were not there last Sunday as we were visiting with friends for breakfast at RMH but they set up a table in the foyer with several 8X10 black & white pics of Maddie and our family and a sign up list! Thank you to all our faithful prayer warriors this week for your love and commitment to our sweet girl and our family! We love you ALL!!
We ended up not having D clinic Monday as Maddie was feeling and looking great and there was nothing really to be seen about however, Tuesday night she started complaining of left leg pain again esp in the groin area. She had patikkei(sp), a small purplish bruise usually indicates low platelets, come up on her neck so I took her into the Med room on Wed night but platelets were at 140 down from 165 all within normal range! This could just be a slight drop from the Radiation treatment. As far as the pain, it is mainly at night when she wants an ice pack and pain meds and I've been having to give the Dilauted for two nights now.
She is limping again and her hair has begun to fall out in the back where radiation treatment was given. She does not know and we have not said anything to her as she can't see it anyway and she REALLY wants her hair to grow back. It saddens me as she gets older and I see her struggle with more issues like that of mommy, why is my hair not growing faster? We were pulling into the apt gate one day a couple of weeks ago when she was so sick and said, mommy you know that God knows all our names and He knows when we pray to Him? Of course I had to say Yeah, He must be having a hard time with Ella's though!HEHEH She just laughed so hard!! Then another time at Thanksgiving, Neal's mom ask her if she was ok after a couple of times of not responding then she finally looked up and said, I'm praying to Jesus... Then as we were sitting in the recliner one day last week she hit her hed with her closed fist a couple of times and said, "I can't get that out of my head" and I said what Maddie, what are you talking about? and she responded, I can't get that dying stuff out of my head then she said quickly, nevermind and would not talk to me about it and then went on playing. UGGHHH! These are just some things I've noticed lately that's been on my heart with her. Please just pray for the right words to come.
Let me go back to the past week of events, Maddie, Ella and I were ask to be part of the Bartlett Christmas Parade last Saturday! So for anyone who was there, we were riding with Cinderella in the horse drawn carriage!! Maddie had a great time This was something she wanted to do for her birthday so I was thankful for good weather and happy she got her wish!
We also got to see Santa and had beautiful pics made of the three kids with him! This is Ella's very first Christmas~she's now 9 months old!! She stared at Santa, touched his beard and soft coat, held his finger with his white satin gloves on but NO smiles for the pictures! She would look at Maddie and then at Tyler as if she were checking to see if it was ok! HEHE The picture is priceless and I am so thankful to get this years Santa picture with all three of my children, I bought the light up frame and a snow globe as well!! It dosen't feel like Christmas to Neal and I but something we just hope to make it through as if it can't get by us fast enough. But each day this season is filled with something fun and not caring if the house is picked up but just doing our usual memory making~counting the days til Christams, making fudge, wrapping presents, playing games, watching a Christmas movie each night, baking cookies, visiting with friends.......Hope your holiday is one filled with the most Joy of the season!
Well I have to be going as Miss Donna is coming but I'll check in soon!
Love Brandi
PS SCANS are scheduled for 12, 13 and 14th. We cannot sign consents until the 17th and then treatment can begin however that is her birthday and we have NEVER started things on her birthday if we have the option to wait one day but we'll just have to see how scans look. PLEASE PRAY for MADDIE!! BELIEVE, HOPE, REJOICE
Have a Happy Holiday!!
Saturday, December 1, 2007 8:46 AM CST
Mission Complete!
It's been a week so I'll catch you all up! Maddie has been feeling GREAT all week! It was great to walk back into D clinic on Monday! Of course I will say we were just there to "show off" SMILE letting everyone see her smiling and hugging again! She has been doing her schoolwork this week and writing very well I must say! She's learned to spell many new words and even site word reading sentences! Not reading just yet but were working on it!
She went every day this week getting her radiation treatment to the back of her head. She and I struggled with the idea of laying there without me holding her hand but finally after some TLC she rocked the show! She did fabulous this week! Let me tell you exactly how it worked as it was so quick! She got up on the table laying her head in the tight, molded, white sand bag, then they would line the laser beams to the blue cross marks on the side of her head and one in the center between her eyebrows, they put the non sticky tape accross her head to "remind her to be still", seat belt on, we left the room and they counted to 40 on the overhead speaker to her, turned the rad machine, counted to 40 again and DONE! So the radiation was completed on Friday! YEAH MADDIE! She got a Mission Complete T-shirt, balloons, stickers and a gift! Thank you to the Radiation team for being so sincere and sweet to Maddie! Thank you to Habitat for Hope for coming to sit with Ella many days during this time!
On a side note we had a very exciting event go on at the hospital this past Thursday and we were thrilled that Maddie was ask to do a photo/video shoot with Hannah Montana/Miley Cyrus! It was so precious watching Maddie run up to give one of the kids very favorite T.V. stars a hug! Miley was very sweet as she talked with the kids and even did a few dance moves! We were able to tour her Hot pink tour bus as well! Even Tyler got to get a hug, autograph and picture so needless to say he is still talking about all the excitement and will be for a long time to come as she was on his list of people he'd most like to meet along with George Lucus of course!
We got to visit with my friend Emily this week as well and hang out with the Montgomery friends too! We have our sweet Angel friend Zoie's parents in this weekend for dinner at Zoie's favorite restaurant and breakfast at the RMH on Sunday morning!
Well now back to the not so fun stuff, we will have clinic on Monday. Not sure what we'll find out but we'll keep you updated!
Love to all,
Brandi
Sunday, November 25, 2007 10:27 PM CST
Happy Sunday..
Well the past week and a half has been a whirl wind of a time and emotions watching Maddie so sick and helpless. So many unfavorable scans, symptoms and heartache...
The Thanksgiving holiday was one filled with gladness that we were able to be with the grandparents and cousins but sadness that Maddie didn't feel well enough to play though she did sit at the Thanksgiving table with everyone only to eat just a bite which she didn't hold down and then back to the make shift bed in the living room. While all this has been going on with Maddie, last Sunday Ella bacame sick as well as she was not keeping anything down. Neal's parents took her home with them so that we could focus on Maddie. (talk about stressed with two kids sick and in different places!) On Tuesday before Thanksgiving when taken to the local Ped Dr there in Huntingdon, she had a double ear infection and given antibiotics. She seems to be getting better!!
Now looking back with Maddie being so sick, then Ella, then Neal's dad and now two others that were at Neal's parents I wonder if there wasn't a virus or some type of bug being passed around? hmmm.
By Friday night Maddie was ready to get back home to Memphis so we loaded up and home we went! On Saturday, Maddie felt GREAT! She ate and kept it all down, she and dad played on the computer while Ella & I ran errands. When I got home a few hours later she was dancing in the LR with her attached fluids in hand! We stayed up til midnight watching Home Alone 1 & 2! This morning, she woke up and first thing she wanted was her church clothes! So even though tired from the late night and thinking she would not even feel like going to church, we scrambled around to get there! It was a blessing to see her as she took her offering to the basket up front and she enjoyed Bible hour with her friends! She ask to eat at the Waffle House after service but then seemed tired so I thought oh no here we go but after getting home she perked right up and the rest of the day felt really good agian!! We did not go to our usual Sunday night Life group get-together as I just don't want to rock the boat too much in one day!(of course I would have needed a boat with all the rain we got today!HEHE) She is back to eating (she ask for hotdogs last night at 9PM so dad and Tyler headed to Kroger for hotdogs!) She has not laid on the couch since before church this morning! We have played Blokus, played the Wii, she made a pie with dad, and she and I wrapped some Christmas gifts tonight! WOW is this girl amazing or what!? All I can say at this point is my heart is happy and I am thankful she is back to being Maddie the past two days! I will not lie I was so very scared for her and us and not that I'm not worried about the situation she continues to fight but a weight is lifted when Maddie feels good and is up playing, smiling, talking and dancing!
The plan this week is to continue with the radiation treatments until Friday. We have to wait at least 2 weeks afterwards before starting any other treatment. I'm sure we'll do scans within that time but we'll keep you posted!
Thank you for lifting Maddie and our family in prayer as you have come through yet another time for her and us. We have read each and every thought and prayer you sent our way in the guest book! Thank you!
In His powerful grip,
Brandi
Tuesday, November 20, 2007 11:23 PM CST
YES! like icing on a cake it has been the sweetest day this week! Maddie woke this morning with the same fatigued attitude as the past 6 days but as our friend Mylissa just updated she came out of her first treatment with a different tone! Before treatment it did take her some time to get comfortable with the new environment including the team of radiation specialist, new room, big machine, and the fact that mom could not be in the room with her during treatment. She was very scared. However, after a long talk she began to trust the team and myself that she could do it and she did! What is strange to me is the fact that Maddie, given the choice ALWAYS preferred sedation or the white sleepy medicine as we call it, but today she really stressed that she did NOT want to be put to sleep. Hmmm
We arrived home about 2:30 and since that time she has been awake! She has walked wherever she has needed, bethroom, to get a coloring book to get some clothes on besides pj's...we received a very yummy meal from the Taylors through Habitat for Hope tonight (thank you Missy, Cole & Ainsley) and afterwards headed to WalMart for Santa Clause 3! She also took us through the toys with some Christmas suggestions!
On the way home Maddie wanted to listen to some music. She was dancing and snapping her fingers and singing loudly!! The song Loving You by Rascal Flatts was on and she said hey, this is my favorite song!HEHE she lives for the moment! As she was dancing in the seat she said, I feel so good already, I don't need my treatment in the morning!! SMILE
She wanted McDonald's on the way home-same-o, same-o she said! Cheeseburger plain with ketchup only, FF and a vanilla shake!
Can you believe all of this and I'm not done she has had only 1cc of Dilauted pain med (given for little neck pain just an hour ago)since 9pm last night! It is a special night-it's midnight and we are still up watching now Santa Clause 2 and playing paperdolls!! I just can't get over this turnaround! A huge amount of stress has lifted from me this evening! We are so very Thankful for I feel she will be enjoying this Thanksgiving holiday! SMILE
We have her second treatment at 1PM on Wed and then will be heading to see the grandparents, aunts, uncles and cousins should she still feel well!
Well I just couldn't wait to tell you all our wonderful news! Please say a prayer of Thanksgiving that Maddie feels so well and will enjoy the holidays with her family & friends!
We love you guys and hope you have a wonderful and peaceful Thanksgiving!!
Love, Brandi
Neal, Tyler, Maddie & Ella
Tuesday, November 20, 2007 0:07 AM CST
UPDATE Tuesday Nov 20th 7:27pm CST
WONDERFUL NEWS...
madelyn had her first radiation treatment today. First of all, she decided that she would do her radiation without sedation, and you know when Maddie puts her mind to something, she does it!! She was successful in completing the treatment without sedation. When Brandi brought her out, she pretty quickly perked right up and we played with her new barbie. I noticed a huge difference in her, and just wasn't sure if it was a fluke or if the treatment could have helped that quickly. But...I just got off the phone with Brandi, and it turns out that Madelyn has been feeling GREAT all evening! They are currently out getting her a new movie that she wanted. Brandi and Neal are giving all the Glory to God for Maddie getting relief from her symptoms. I can't tell you how wonderful it was today to see her shiny little personality again. Brandi will update as soon as she can.
God's blessings to you,
Mylissa Horrocks, Habitat for Hope for Maddie and the Beamons
Urgent but not emergent....
Those are the words we heard today. WOW how things can change in an instant. First let me go back to Friday where Neal left off and get everyone caught up. We did not do Bone Marrow aspirates on Friday and was said to hold off til Monday.
Saturday morning Maddie woke up with leg pain and was given Dilauted around 9:30Am then slept from 10:30 to 1pm when she awoke to find dad and granmonna and pa not home. So she called dad on the cell and ask him where he was (he had went to Wal-mart for groceries)and then began to tell him to get home that she was ready to go! (Earlier she had heard us talk about going to WM and she insisted she wanted to go also and then go and get her nails done! But she was SO tired that we ask her to take a nap then we would go and do something!) Anyhow, he was right outside the door coming in when she called and she jumped up in full force and sat at the table for lunch (she had chicken bites)! It was 1:15 at this time, I called her friend Bella and her friends Casey, Taylor, lillie & Lanie and told moms to meet us at Sweet & Sassy in 45 minutes! It was short notice but we did just what Maddie needed and wanted at the time! Dad and Mr Mark were there to take pics and video of the girls! Way to go dads for hanging out at the girly girl shoppe! Maddie then decided she needed a pedi as well and even after a 30 minute wait and a bout with nausea she insisted she have one. After soaking her feet and half way through the polishing she was fatigued and was ready to get her sparkles on her toes and go home. The adventure was a beautiful time spent with her friends but over stimulating for her as well. For her birthday this year that was what she most wanted to do! Thanks girls for celebrating with her!
She did get sick at home and then setteled to watch her new movie Shrek 3 dad had gotten her earlier that day! Which by the way she squealed with excitement over!
As far as pain meds she only had to have them over the weekend once in the Am and then once at bedtime!
On Sunday, neal and I tried attending church services only to get a call mid way that maddie woke up and wanted me NOW! She ate a couple of bites of Fruity Pebbles for breakfast and half a strawberry for lunch. Not much huh. She has 24 hour fluids running through her line. She mostly just wants to be rocked and held by mommy and gives me many kisses on the cheek and by the way she held my face and kissed my lips several times with a smile-this is so unlike her as she never liked that before as it was gross she would say! (SMILE)
Today, (Monday)was a much awaited for day, as the weekend, full of her sleeping has been filled with many tears as I straightened her room, went through her dress up clothes and pressed a button on her Build a Bear puppy which has her saying "I love You". Many happy memories of a child so loved are filling my heart and soul right now!
We had clinic at 7:45 with anticipation of doing Bone Marrow Aspirates but after reviewing the scans once more with the radiation doctor it was advised that the spot on the back of Maddie's head is most urgent but not emergent to treat at this time as any bigger can disrupt blood flow causing major damage to the brain. So she had her markings done today and will get a dose of radiation on Tue and Wed of this week and five days next week. They feel this will stop her headaches and hopefully shrink the tumor as well. Her lab work looks great with hemoglobin at 12.5, ANC is 4800 and platlets at 220 all normal! She was exhausted by all the appts today. Neal's parents have went home for a night or two with Ella. Tyler is at his dad's. Neal and I are spending all the time we can with maddie not really knowing what to think of all that's going on but just lovin on her like there's no tomorrow!
As far as we know, Dr Furman has NOT said we are out of options. What he has said is this, there is no cure for this disease, which has been said since day 1. There is now evidence that this disease is growing and there has never been a case of reversal with the options that are left for Maddie.
We are scared of our limited time we feel we now have with her.
I felt a sense of "Tunnel Vision" as I entered the hospital today as If I were on one mission and one mission only and that was to get from one appt to the next without talking or upsetting Maddie in any way just painting, coloring, reading and holding on-It's like being on a ride that is full of stomach turns but knowing that if you get off it may be your last. The hospital as we know it is filled with many happy memories of 3 and a half years of time after time proving doctors wrong with miraculous recoveries and many fun events, It's no place you want your child but if diagnosed with a life threatning illness, it's a place full of life! Maddie loves it here and we sat at the play areas a couple of times today coloring and painting turkeys!
Please know that I am grateful for this website and I want to keep you guys updated as promptly as possible so it could be late when I can update! We have the very Best supporters and we thank you for loving us!!
love Brandi
PS Many of you have been seeing Maddie EVERYWHERE! Thank you for letting us know where you see our hero!
Wednesday, November 14, 2007 10:31 PM CST
UPDATE NOV 16 2007
Today we recieved the results from Madelyn's CT scan. They were not good. The CT showed that the tumor on the back of her has grown inward. It is now pushing against her brain the main vein that blood exits the skull. They were afraid that this would be cutting off the vein enough to cause backup of blood in her head. Further tests show that the vein is not yet being restricted enough to cause pressure buildup. This was a good thing because she can not have anesthisia with pressure in her skull. Therefore, no further scans. She is still having quite a bit of pain in her legs and is taking dilautid for this pain. We are just trying to keep her comfortable over the weekend. We are to have bone marrow aspirates done on Monday and talk with DR. Furman about this latest development since he was not there today. I pray that we start some kind of treatment Monday. Rather it be the new study or an old treatment.
She is eating very little, just a few bites each meal and not drinking very much either. They have put her on 24 hour fluids over the weekend and Monday decide to stop or continue with that. Right now she is playing with her grandmother. She is talking and playing the most she has all day. It is still hard for her to walk and she limps. This is very scary for Brandi and Me. We are of course not showing it or discussing it in front of Madelyn. We don't want her to feel discouraged in anyway. Please pray her pain will ease up and that we will chose the right treatment, that that treatment will begin to work by stopping the pain and killing the tumor. Dr. Furman told us that this is a battle that only a couple of patients have won over the past 25 years, but if anyone can do it I know with all my heart and faith in God that MADELYN CAN WIN!!!!!!
Thank you all for your prayers
Neal and Brandi
What a long day....
Maddie did not have a good night last night. She woke up crying out in extreme pain in her left leg around 12AM. We give her Codeine, Tylenol, Benadryl and a heating pad, none of which worked. I called St Jude at 2:15 for something stronger so Neal was able to go over and pick up some Dilauted and more Codeine RX. She wanted so badly to go inpatient so as I was packing up things to go over I walked in her room at 5AM and she and dad were sound asleep so as I hoped the pain was going away and she was able to sleep I just let her sleep but she was up at 7:30Am with more pain and more Dilauted. More pain by 10AM so I took her in for some IV Dialuted. We are now giving 2ml every 3-4 hours scheduled until we see Dr Furman tomorrow. Since 1PM today she has been sleeping all of about 2 hours when she got up to eat chicken bites with ketchup and then alittle later when she wanted to sit in my lap and color daddy a picture of Belle! She did end up throwing all her food up afterwards. I called the Dr and we're guessing it could be the Dilauted but it was a new symptom so I thought it worth noting. Through all of this today she has been so very sweet and loving giving kisses and hugs and i love yous galore!
Well I have to get some much needed rest as Neal and I have been up talking and looking up scripture tonight while our girls sleep. I hope that we can continue to find God's words uplifting and encouraging as we continue our journey together.
I will keep you posted as we have clinic tomorrow PM and then her IVIG medicine (immune system booster)in the Med room afterwards!
Praying for Maddie a better tomorrow,
Brandi
Neal, Tyler, Maddie & Ella
PS HAPPY BIRTHDAY TO MY MOTHER, GRANDMA SHERRY!!!
Tuesday, November 13, 2007 8:45 AM CST
Morning to all,
We had a visit with Dr Furman yesterday...the results of her MIBG are not what we had hoped and prayed for but God is working. He is merciful and He is carrying us through. We were able to stay busy yesterday and occupy our minds as we were invited to stay the day with our Montgomery friends here in Memphis. The girls and Tyler as well as the adults played on the tire swing, rode bikes, tossed football, rode 4-wheelers, skated, jumped on the trampoline, grilled out and just had FUN!! Thanks guys for a great day and memory!
The MIBG shows that several of the spots are hotter(in her right orbit of the eye, and several in the left leg and hip) but let me say this...According to Dr Furman this can result depending on how the contrast was mixed! In other words, there is a radioactive dye that they inject in Maddie's line for this test that makes NB cells 'glow or light up' in the body and that contrast is made according to a "receipe" according to weight of the child and such and you know even with a measuring cup there can be a slight, a like to say smidget here in the south, of a difference making the contrast a bit hotter!
However, Maddie has a NEW spot on the right hip. Bumfuzzeling to me since she hasn't ever complained of that side but this disease is sneaky we've seen.
Keep in mind Maddie hasn't had chemo for 13 weeks now!
So we know that by doing nothing this disease will and is going to grow but I am thankful this day that it is not worse after this amount of time with no intervention!
Let's also keep in mind that our prayers of quality of life are being answered! She is still strong! SHe is smiling, laughing and playing! Also the prayers for Dr Furman and the team as well~as Dr Furman is keeping Maddie's quality of life a HUGE focus as he continues to search for a SAFE drug for her! He is doing the VERY BEST that he can for her given the circumstances! What a position to be in as I look in his eyes and ask for help....He is a believer in prayer so I trust that God will guide his efforts in the fight for Maddie and His children!
I will update hopefully tonight when I have more time as to what the plan of action or next step might be but I have to get school started this morning!
Just know that Maddie looks and feels great and the journey continues for our St Jude Hero!
We have some exciting things in the making so stay tuned to see how you can be involved!
Love, Brandi
Friday, November 9, 2007 9:57 PM CST
Hello to all,
Maddie is feeling GREAT and looking Great too!! What more can we ask for? Well a CURE would be nice but for now we'll just watch God's plan unfold....
We have been enjoying the nice weather! We took a weekend trip to see the grandparents this past weekend. We met up with our friend, Miss Donna and her grandkids to eat at Snappy Tomato Pizza this week-Maddie's absolute favorite is their famous chocolate pizza!!
We had clinic again on Monday and the protocol is still NOT ready. We ask that Maddie at least have a scan done and so we had an MIBG done on Thursday. We will get results during clinic visit on Monday. We ask that you please whisper prayers for her this weekend.
We ask that you please also pray for Hallie Gravel, age 5 from LA, and her family during this time.
Hugs & kisses,
Brandi and family
PS I've been informed by our Canadian prayer warrior, Ms Robin that the Lunch for Life campaign is officially underway and Maddie has a tree started!! Go to lunch for life.org for more details on giving in honor of Maddie!
PSS Be sure to look for Maddie this holiday season as she is now featured as the face of HOPE for St Jude's Thanks & Giving campaign! What an honor! She is already in various magazines, internet banner ads and on the TV commercials with Bernie Mac also featuring Ray Ramono, Jennifer Aniston & Robin Williams. She will be showing at all Malco theatres beginning Thanksgiving weekend and featured on Time Square!
She has been through so very much. We are so proud of her and thank God daily for her! We hope that she has made a difference in your life, and that she has taught you how important and precious life is. Life can change in an instant. At this instant we are thankful for her life here on earth and are blessed that she is able to be featured as the face of HOPE for St Jude! Please give in honor of Madelyn so that they may continue the much needed research of fighting cancer and saving lives like they've done thus far for Maddie!! We love you guys!
Thursday, November 8, 2007 10:47 PM CST
Just wanted to let you all know that we had a scan done today. We are still waiting for the new study to be approved. Madelyn has had some pain in one of her legs so Dr. Furman wanted to do a scan before waiting any longer. If it shows the worst we would start something immediatley. We should know on Monday. Please pray that her scans show improved or at least stable. Thanks
Neal
Wednesday, October 31, 2007 9:28 PM CDT
Oh the little things....
HaPpY HaLlOwEeN!!!
Hope everyone had fun and got lots of spooks and candy this evening!
Here at the Beamon household we are trick or treated out!! The kids and I enjoyed a two hour adventure roaming the St Jude halls today in search of some much needed candy!!lol Not really but we did get lots of it anyway! Tyler was Darth Vader, myself was a witch, Baby Ella was a Rodeo clown (so funny)and Maddie was decked out for a Pajama party in her pj's, pigtails, cheetah eye mask, bunny slippers and carrying her teddy bear!! She looked so sweet!
When I said we didn't really need MORE candy well this was the fourth trick or treating event we've done this Halloween as we hit the fun fest at Once Upon a time on Saturday as well as the fun fest and hay ride at the Hope House, trunk n treat at our church and then weiny roast, hayride and another trunk n treat in Somerville on Sunday! WHEW!
So today when we returned home from St Jude Maddie said, "Ugh, I'm all tricked out!" lol I don't think I want to go trick or treating tonight she said. I mean she had done been Dorthy and a cat this weekend as well! We all had a nap and then went out to a great dinner at Joe's Crab shack and ice cream for our Halloween treat!!
Now for not so fun talk-Not that there is anything wrong or going on just that I wish I could just talk HaPpY things ALL the time but anyway we had clinic on Monday and the protocol is still not available but they hope by this next Monday, Nov 5. We hope to see what's involved then schedule the neccessary scans for the start of the protocol. Maddie looks and feels GREAT!! She is doing AMAZING!! Except she's having the darndest time with hang nails!lol Full of energy and pure JOY non the less!! She is eating very well like every couple of hours! She even tried shrimp, shrimp cocktail and pumpkin pie tonight! She loves the pumpkin pie so daddy buys her a whole pie! OH and she's back to eating chicken bites again as well! Oh the little things that bring a smile to my face!!
Well we will be doing school the reat of the week and then heading to Huntingdon for the weekend and looking forward to Thanksgiving! Just 55 days til Christmas!
Love to all,
Brandi
Neal, Tyler, Maddie and Ella
Sunday, October 14, 2007 2:54 PM CDT
Good Sunday to all!
Just wanted to let everyone know that we have clinic with Dr Furman tomorrow (Monday) and we need you to PRAY! Pray for the wisdom of Dr Furman and the medical team making life changing decisions for all of us especially Madelyn. Pray for our hearts and minds to be at ease for the decisions that we have to make regarding Maddie's treatment.
Maddie feels GREAT!!(probably the BEST I've seen her in 4 years) She has No cold, sinus, allergy symptoms, no complaints of pain, no whining, just full of life!! So full of JOY and happiness! This makes it even more difficult to start treatment. I mean imagine your child feeling and looking perfectly healthy and normal and then putting poison/drugs in their system. UGGHHH IT IS TRULY PAINFUL to know we have to make another life altering decision.
We went to church this morning and the girls looked so sweet in their little crochet hats with bows and their little coordinating puppy dog dresses. Maddie picks out Ella's outfits then finds something of her own to coordinate. HEHE She is loving this BIG sister thing! Tyler loves it too but don't think he's going to wear pink like his sisters anytime soon! HEHE Anyway, I was just thinking how much it means to Maddie to be at Sunday school with her friends and how excited she gets. I'm so happy she loves Jesus!
Thanks Miss Brooklyn & mommy for spending the morning and evening with us on Saturday! We'll miss you guys! (They were in town for the day for a Country Cares event)
Well I will go as we are heading to our Sunday evening Life group but please continue to pray for Maddie.
love,
Brandi
PS The pictures I've posted recently say a thousand words! Isn't it amazing how happy and full of life she is just one day after getting off the vent! WOW!! SMILE!!
Monday, October 8, 2007 8:03 PM CDT
SEE NEW PHOTOS ABOVE! OK so I'm a couple of month's behind but they were next in the works! They are more of "Maddie's Miracle Milestones" when Maddie was last inpatient and her transition home and now looking great!!
What a game...
We are back from our wonderful weekend trip! We were able to go out to a nice dinner at one of our favorite restaurants in Nashville on Friday night called Cock of the Walk! The best fish, chicken and pickled onions ever!! Then it was off to Neyland Stadium on Saturday and boy was it so much fun!! We had really great seats where we could actually see the numbers on the players and the big screen as well! Neal and I both agreed that we couldn't have had a better anniversary gift than cheering on the VOLS in person at their home stadium! Thank you Kim for getting us tickets and Emily for our hotel and having full reign of your home when we're there!!
Tomorrow Oct 9, is our actual anniversary date so I want to say thank you to my husband for 8 years that has proven LOVE withstands many trials! Though our journey together has brought about many challenges, I respect you for the father, husband and friend that you are-thank you and I love you always!
Maddie is doing so very good that it frustrates me to have to start a new or any for that matter, treatment. We had clinic and will meet again with Dr Furman to discuss what he feels we should try, it's a new Phase 1 treatment consisting of 3 chemos that should be out this week. He was not at all willing to try the TEMKID again and since we weeded out the other 3 treatments due to most likely to cause lung damage there is only oral Topotecan left and the new one coming out. So when I get the information about the study next week I can make a more informed decision so for now we are off this week as well!
We have school to work on and Tyler is staying busy with Basketball! Baby Ella is sitting so well and is all over the floor! She scoots on her little elbows quickly! I know it must sound crazy when I talk about the baby with the many names she's had! Boy, it's like having 3 kids in six months!!hehe I'm so glad it's behind us now though as she is now learning her name!!
The funniest thing she is doing is we lay a large blanket on the floor and put her toys way awys in a corner and instead of her getting on her belly and scooting to them, she'll just pull the blanket toward her until ALL the toys are in her reach!! So funny!! SMILE!
We picked up the girls ribbons today from the Cute Baby contest at the Bartlett Festival, just wanted to say that if you'd like to see the girls pics they are in the Bartlett Express this week until Thursday!
Also want to mention a special prayer request for our sweet friend Ryan Breedlove from Knoxville who has been diagnosed now with childhood epilepsy on top of being a Retinoblastoma patient. His site is www.caringbridge.org/tn/ryanbreedlove
Love to all and HAPPY ANNIVERSARY
TO MY WONDERFUL HUSBAND!!!
Brandi
Tuesday, October 2, 2007 8:33 AM CDT
girls just wanna have fun...
First I need to clarify the past journal entry as I went back and reread I apparently left some things out!
As I was saying about baby girl, we are calling her Ella. Cinderella was Maddie's very first movie to watch and her name being in honor of Maddie, this name has personal meaning to me! It means 'Beautiful Fairy Woman'! Anyway, so you aren't crazy if you read the entry then it went away. I really struggled over renaming her-again but I really love this name for our little girl. I want to say thank you to our FRIENDS and family for understanding. We love you guys! I am so happy to have this behind me and truly feel blessed to have her, she has made for some happy times with all of us already! We are having so much fun wathcing her grow! She is sitting up and also scooting all over the floor! Her toes are in her mouth and she has discovered her little fat rolls between her legs! Have I told you how much she is a spiitin image of Maddie as a baby and dad too for that matter!
WOW! What a week we've had! Our friend Brooklyn was in last week and we just did what girls do! Fuss & play!!HEHE Seems at first Madelyn wanted to do one thing and Brooklyn another but they soon figured out what each liked together and had a great time together!!
Let's see we took Miss Brooklyn to get her very first haircut post chemo at one of Memphis' gurly girl shoppes, Sweet & Sassy! We also went to another of our favorites and had story time with Mother Goose at Once Upon a Time! We all gathered at the Hazzard Swamp Pit Crew BBQ Fest at the Bartlett Park where daddy, Tyler and the guys camped out at the park around a fire watching over the BBQ! We joined them half the night before turning in and then the next morning we were back out there eatin, playin and havin fun! I entered both the girls in the "cute kid" contest, Ella got first in her category and Maddie got third! They both recieved very nice ribbons and should be in the Bartlett section of the commercial appeal this week!
We also had a Halloween slumber party where the girls got their nails painted black & orange and talked about Halloween costumes! Maddie I think has decided to be Dorthy but of course that's never set in stone until ughhh like the week of! HEHE Ella has a lil tutu fairy costume but still deciding on that too! Tyler, I'm sure will be something from Star Wars! We get really into Halloween...I've heard many don't agree or like the holiday but we think it's just the funnest holiday yet and enjoy the ritual of trick or treating! My fondest memories are of dressing up and trick or treating!! WE just love it!!
Thanks Miss Brooklyn for sharing so much of your time with us this week! We love you big girl!
Also in my last journal I said to look for Maddie at the local mall in the Sterling Jewelers ad but that is the umbrella for all the little companies under that name. So the other names would be KAY JEWELERS, MARKS & MORGAN and any other owned by Sterling Jewelers, INC!
Check out the St Jude Website!!!!! MADDIE IS THE FEATURED PATIENT OF THE MONTH FOR OCTOBER!!! Maddie has been such a fighter of this illness that has sometimes crippled her childhood and many times left her to fight for her life. We continue this battle and help St Jude reach their goal of helping find a cure for her! Please know that by becoming a Partner-in-Hope this month in honor of Maddie, we will receive an honorary notecard indicating such. Your contribution to our hospital, who continues to fight for our daughter daily through research and treatment, will be a generous token of love and support for us all who continue to fight and in memory of those who have lost their battle. Visit www.stjude.org Maddie raised the most money ever in the Christmas Appeal campaign in 2004 with (13 million)and we want her to do this again as the patient of the month! ALSAC (the fund-raising arm for St Jude)WILL let us know and I will let you know!!
Mine and Neal's 8 year anniversay is next week and the two of us are looking forward to a great weekend with friends in Knoxville attending the TN-Georgia game!! We are so very excited as this is our first HOME game to attend! Good for us we both love and enjoy football so I can't think of a better way to celebrate our anniversary!!
We should have clinic on Thursday to discuss our options so I will keep you posted on what we decide. Maddie is feeling really good. Thanks Miss Donna and Emilee for visiting this weekend as Maddie always has a fun time playing!
Please pray this week for wisdom as we make decisions regarding Maddie's treatment.
Love,
Brandi
Tuesday, September 25, 2007 8:42 AM CDT
too many decisions...
We had clinic on Thursday and was given what you could call a "BOOK"! It was about 5 protocols to chose from and we have NO clinic visit this week unless we come up with one that we want to use........Neal read over all the options which were 1) CC-5013 2)BMS-354825 (DASATINIB) 3) combo of ZD1839 (GIFITINIB, IRESSA) and Irinotecan given orally 4)SAHA followed with SAHA in combo w/13 Citretinoic Acid (ACCUTANE) which is only available Oct 12th. 5)Topotecan 6)another study that will not be available until Nov.
4 of them are phase 1 studies and not that those don't give relief or work on tumor because we've seen a phase 1 turn her around before but the question is this, if we're on the front end of the study will we get a dose large enough to keep the tumors from spreading and if we're on the back end will we get a dose so big that it throws her into ICU. And then a couple say likely to cause fluid retention and one says most likely to cause fluid retention which is what caused the last two visits to the vent. The only one that had the least amount of side effects was the Topotecan which she's already had. There is another protocol coming out in Nov about 6 weeks that is a 3 drug combo with one drug being something she's had too but it's I guess a new combo not yet used before here but with all protocols stated we cannot have ANYthing/NO chemo for 3 weeks before administering.
Neal and I have omitted 3 of the protocols and we're going to ask again about going back on the Tem Kid we were once on since it's at least a phase 2 and though I know he said that it's "likely" to have caused the fluid retention, I'm not convinced that IT did~I know it caused her extrememly low T-cells and I really think with that it caused her not to fight the croup she had putting her on the vent last month. We would just have to keep her more isolated, I know what your thinking...what fun is that for a kid but my thoughts is we could just do those fun things she likes to do at times less crowded such as weekdays and she is really, really great at putting the toilet paper on seats and washing til her hands turn to prunes and mom is constantly squirting the sanitizer!HEHE
Maddie has been feeling good with some occassional aches and pains that I think are just tired at night from the day-given alittle pain med and she's off to sleep just fine and wakes feeling good!
The baby had her dedication at church on Sunday. She looked beautiful in her long white smocked dress! The funny story behind this dress is I ordered a long white gown with slip and bonnet but when it came in the bonnet wouldn't even cover her head and and the dress was I guess irregular just not fitting right at the top and sleeves. Well without paying an arm and a leg for a gown at the boutique I tried on one of Maddies long white gowns with smocking on the neck and sleeves! It was perfect and you would have never known it was a size 5!!HEHE
OK for some exciting news...Maddie is a featured patient for the Sterling Jewelers/St Jude Thanks and Giving campaign NATIONWIDE! See her in malls NOW!! We saw her in the mall at Wolfchase and a friend called to say they seen her in Alabama! It's a sweet picture and hopefully will bring awareness to the hospital and many bears purchased for Christmas in honor of the kids of St Jude! Let us know if you see her in your mall!
I got to play my all time favorite sport and position this weekend as I played in the Habitat for Hope charity softball tournament! I hadn't played since college-10 years!! nd YES I am sore and paying for it!!HEHE But it was so much fun!
Yesterday the kids and I decororated the vehicle with window paint for the annual St Jude/Chili's day! We were able to eat with another St Jude family, Tony & Carla Harwell in MS last night and had a fun time seeing many familiar faces!
Miss Brooklyn is in town this week and we've been able to hang out with them this weekend and was so happy to have them visit our church and dedication on Sunday and Madelyn was so excited to have BFF join her in class! Thanks guys! We visited Sweet & Sassy for Brooklyn's first haircut and Danielle is putting her crafty skills to work for me this week! Brooklyn however did not feel well from her eye surgery yesterday and was unable to join us for dinner. Please pray for this family today and this week as they experience issues uncommon with Brooklyn and will get scan results this week before leaving on Saturday.
Well I will update as I know more on Maddie and what we'll do next! Stay tuned!
Love Brandi
PS (Precious thoughts to ponder)Maddie has been wearing a pair of pink sunglasses for two days now as she pretends she's blind and they help her see better! It is really as if she's seeing the world through rose-colored glasses huh! We were reading the story of Helen Keller the other night and she looked up at me and said, "having a line is not so bad, is it mommy".
Tuesday, September 18, 2007 9:59 PM CDT
Hello to all!
Things are looking good! Let's see, we had clinic last Thursday and with Maddie being still alittle short of breath when she has activity, Dr Furman wanted to give her another week before beginning more treatment.
We had her monthly dose of IVIG (Immune System Booster) in the Med room last week. The results of the MIBG are STABLE!! Many Praises! We will talk with Dr Furman this Thursday to discuss treatment options.
Tyler has been busy as he started playing Basketball for FCA, Fellowship of Christian Athletes and is really enjoying the games-not so much the practices!HEHE He talks about the dreaded Ladder drill and Hour-glass! He had his third game on Saturday and last Thursday during his second game he scored his first ever basket in a game! YEAH!! However, I missed it due to Maddie and I along with one of her little friends and mom going to the American Idols Live Concert! It was alot of fun but Maddie only wanted to see Bo Bice! He must have made a big impression on her! hmmm Anyway, Neal and Emmy were there and I got to hear all about it!
Tyler has a math class he attends twice a week and had Baseball tryouts this past weekend which he of course made the team~he really excells and enjoys Baseball of all the sports! He talked of how much he missed being on the field after two years of not playing but he picked up right where he left off as Emmy and I watched him practice!
Maddie and Dad spent the Saturday together and the other three of us went yard saling! Tyler found some comics and a free Hockey stick! I guess he's thinking of playing some Hockey maybe???hmmmm
Emmy is doing well she had her 6 month shots a couple of weeks ago and her 6 month pics which I will post (eventually)! She has the cutest rolls! OH, she's sitting up!!!!! A New milestone! In one pic she's holding both her little feet and tonight she was trying her best to get those toes in her mouth but the rolls just got in the way, it was sooo darn cute! She scoots all over on her elbows so she'll be crawling in about 5 minutes as friend, Joy has said!HEHE I mean before I turn around there is something new she's doing!
When I picked her up from Amy, Neal's sister a couple of weeks back she was holding her arms out for me which was new, it was the sweetest reunion!
We are working on school everyday as well. Maddie is doing phonics, money, time, devo, manners, we've been learning about the moon phases this week and Helen Keller.
Well other than all that we are gearing up or our sweet friend, Brooklyn's return this Friday. She has scans next week so please pray for God's grace on them this next week! Maddie really misses her!
I'll let you know how our visit goes after Thursday!
Love to all,
Brandi
Friday, September 7, 2007 1:08 PM CDT
A hole in TWO...
Hey there! We are all doing well but first I'll tell you Maddie's exciting news she has been wanting to share with all her friends out there...she has gotten her ears pierced and loves showing them off! Of course this past Saturday, Sept 1, she was pretty nervous while sitting in the chair with a little kitty of theirs also named Maddie her dolly, Hannah Grace sitting along side at one of our favorite gurly girl shoppes in Memphis, Sweet & Sassy. She had a whole entourage of 9 yr old girls watching over her! She was so quiet and still and never made a peep! So brave! I let her choose any pair from the selection she wanted and of course she would pick the most expensive available!!HEHE Oh well! she picked beautiful little pink stone flower with a tiny diamond center! I'll get a pic up soon!
The day before we had a girls day out and spent the entire day at paint-a-piece, another of our favorites!
On Sunday, we all attended the last home game of the Memphis Redbirds with the Habitat for Hope families and volunteers. It was so good to see everyone and watch the fireworks! It was a nice break this past weekend from being inpatient this past month!
Maddie had clinic and PT yesterday. She is still alittle weak in wrist, hips and ankles so Maddie will be seen weekly with PT. They are going to schedule an MIBG scan and a pulmonary testing for next week and then possibly next Thursday we'll discuss treatment options depending on scans--I myself are praying for an amazing intervention that shows absolute amazement to the medical staff! ALL CANCER GONE!
By the way, Emmy is back HOME!! Praise God she is feeling well and everyone is feeling back to normal!! We are all so excited to have her back home after 3 weeks! She had her 6 mo shots yesterday. She weighes 20.7 lbs and is 26 inches! She's just a HUGE chunky monkey! So sweet!! She is still on her 12 hour night sleeping schedule! YEAH!!
Love to all,
Brandi
Friday, August 31, 2007 1:53 AM CDT
HaPpY BiRtHdAy TYLER!!!!
WE LOVE YOU!!
Today is Tyler's 14th birthday!! And bless his heart, he's sick. He's been isolated in his room since we returned from the hospital on Tuesday. Past some double doors in our apt is his room and a bathroom so it's closed off for his use only and that's as far as he can go! We've been taking his meals to him and letting him eat in the bedroom which is usually a no, no here at our house! Anyway, so I thought he was getting better but it's now 2AM and he's still awake and coughing. UUGGHHHH!
We we're suppossed to meet my mom tomorrow to get his birthday gift and Maddie and I were going to spend the entire day together alone. We were going to pick up little miss Emmy this weekend and also get the SUV back but now I'm just not sure what we'll be doing.
Maddie is feeling pretty good! She hasn't complained of any pain. Still having alittle sniffle here and there and a cough every now and then but was told that would last a week or so. We received a fingertip pulse ox today just to keep a check on her O2~ALL LOOKS GREAT! We are doing her PT stretches in the LR floor along with her AG doll, whom she has named Hannah Grace. Yes, Hannah Grace even does PT! We don't have much planned for the weekend except for getting Emmy's 6 month pics done on Monday!
We are getting pics ready for Miss Emmy's Baby Dedication at our church at the end of the month! I can't wait to get my hands on her!
Well take care and I'll keep you posted!
Love Brandi
Tuesday, August 28, 2007 2:01 PM CDT
After two weeks and a couple of days we are free birdies! Loose as a Goose!! HEHE
Yesterday we were looking at a couple of more days but then about noon she had her oxygen off for some reason or another and as we forgot to put it back on 3-4 hours later we thought what the heck, it's not beeping that it's low so we just left it off! t stayed off all during the night as well! So now we are not inpatient material thankfully!! We were unhooked this moring from the O2 monitor and we are flying out of here! Maddie told me this morning that she couldn't wait to get home to play with her toys!!
Thank you to Habitat for Hope and to our family at Sycamore View Church of Christ for a nice hot homecooked meal every night! What wonderful love we feel from all of you! We appreciate all you do for us! Thank you!
Maddie T-cells or Lymphocytes are 11.5 (normal is 25-40) they are still low but coming up. I am sure that we will only be going out when absolutly neccessary i.e.appts. She will begin to get IVIG once a month indefinitly! Baby Emily is still with Aunt Amy and is getting better but still presenting symptoms of runny nose & cough so we have to let her heal. We will see Dr Furman sometime next week to discuss what next.....
stay tuned to Miss Madelyn's Miracle Milestones!
Brandi
Friday, August 24, 2007 11:37 PM CDT
What a relief...
Finally all that heart pounding, pulse racing feeling is more at ease as we settle into more normal territory here on the second floor!
We just got to our room and settled in for the night as Maddie is resting sound asleep and her pulse ox machine beeping...da,da,da,da,da,da...I'm gonna have to find something to drown out that sound!
We had such great nurses and doctors on the third floor and we thank them so much for their extraordinary care for MaDeLyN!!
Madelyn has done extremely well today doing her RT every 4 hours. She has sat in the floor and painted, good for strengthening her back! She made a Noah's Ark necklace all by herself and worked on a crossword puzzle! OH and she also did some homework this morning!HEHE She jokingly told the nurses that dad told her to do some homework... you know you only get a break from homework when you're on the vent!
She received several packages in the mail today along with many cards and well wishes!! She said yesterday, with a big ole toothless grin, it was the happiest day ever getting her IV out but while opening her packages this evening she said today is even better than yesterday!! Thanks for making her day brighter-we sure have alot to be thankful for!! We are just so thankful we have been pulled through yet another trial.
Not sure how much longer we will be inpatient but you can bet when we get out of here that we are taking some very serious percautions when getting out and about and keeping up with T-cell counts!
love to all,
Brandi
Wednesday, August 15, 2007 5:22 PM CDT
For those just checking in, we are in ICU.
Thurs AUG 23 10PM
We have surpassed the vent yet another time! This is our fourth time to overcome such an obstacle in this world of cancer and sickness and the sixth time in ICU. I believe now we are in the clear here in the ICU and will be heading to the second floor on Friday!
Maddie started her PT today. I stayed up all night last night and Neal took the morning shift so I didn't get to see that part but when I got to the room today she was awake and drinking apple juice! She showed me all the things that were gone like her catheter, her IV from her hand and her NG tube from her nose! I couldn't be more excited to see such a beutiful smiling face and then she gave me a big hug! Tonight she looked up at me while changing her pullup and she said, "Mommy I love You" and gave me a big hug! Not that it's totally rare to hear those words but it seems that I say it to her so much first that it just seemed so heart felt coming from her first and feeling I must be doing something right!
I got to hold her last night for a couple of hours while she watched Cinderella but she wasn't saying or doing much then. Then today daddy and I have both gotten a chance to hold our girl! She is laughing and happy! Miss Amy from childife came in with her jingly jewelry on that made her grin really big and then she brought Maddie foam crowns, coloring books and a canvas to paint! Dr Morrison who is on call came in and she gave him a big smile as well, I think she is really excited to have her front teeth out! She has a round bright beaded mirror that she looks in to see her toothless smile! She's been showing everyone who comes in her grin as well as holding up her hand to show her IV is out!
She has been so polite and tolerant of EVERYTHING! I just can't get over how sweet she has been! I mean I know she's a sweet heart but given the circumstances I am pleased to know she must not be in ANY pain or having ANY side effects of the meds she's been on! I don't know that we adults could handle this so well!
She is on .05 of the Dilauted (narcotic pain med), Septra antibiotic, and weaning the steroid! Her oxygen is at 24 percent (room air is 21 percent)! She is wearing an oxy arm on her head it looks like a pop star headset!
Tonight she has eaten mash potatoes, corn and some chocolate chip cookie! Sounds like a girl who doesn't need the ICU huh!! WAY TO GO MADDIE BOO!!!
With all this great news there's bound to be some bad right? Well our sweet little Emmy now has the same croupy virus. UUUGGHHH! When she was here for a couple of days this week I noticed that her little nose had been running and an occassional cough. We give Neal's sister our insurance card just in case and sure enough she woke this morning coughing so Amy took her to their peditrition in Nashville. ID, Infectious Disease is coming in the AM to talk to us about how long to keep her away from Maddie as not to re infect. From other Dr's opinions I'm guessing a couple of weeks. UUGGGHH! So aggravating this emotional rollercoaster is. I know she's in good hands and is being taken care of and Amy is keeping us posted several times a day with every detail of her days away but I do miss her! Please PRAY that she recovers well without mommy.
Tyler has went back with my mom and to his dad's for the weekend. Thanks mom and Tyler for cleaning, washing and sanitiing our home today!
We will continue to keep you updated on the latest going on as we travel to another floor tomorrow!
Thank you for your thoughtfulness and prayers during this time!
Love to all,
Brandi
THURS AUG 23 10AM
Everything is going good. Madelyn is still very weak and they are coming in every two hours around the clock to do respiratory therapy. Please pray she continues to get strong. Thanks
Neal
Wed Aug 22 2AM
Maddie is now settled and has been resting for the past couple of hours. Earlier Maddie was having labored beathing, retracting and wheezing. They had turned her Diluated off earlier to help her wake up as she was mostly in a blank stare all day with little or no responses. They gave her a medicine, NARCAN to see if her labored breathing was a result of having withdrawals of the Dilauted. This med will shut off any narcotic in the system and if the child reacts then they'll know they are having the withdrawals and sure enough within 15 seconds she started some serious shaking and twiching of her body, moving her head from side to side, yawning and then coughing up stuff. They sent a sample to lab for culture and then did blood cultures as well. After about an hour of these episodes and starting the Dilauted back at a very low dose she is now resting well and her breathing is back to normal! Praise Him!
They are having to wean the Dilauted very slowly so that she can continue to rest throughtout the night and morning.
We found that when she got off the vent today and watching her yawn that she has lost yet another tooth on the bottom! They did a chest X-ray and found nothing so the missing tooth is missing! It most likely came out when they took the tube out today but that's not certain!
Today when she was extubated she saw a long paper/plastic tube pkg and ask what it was. We told her it was just trash from her suctioning tube and then she ask to hold it. She said she needed another tube not the one she was using cause it was YUCK but that she needed a new one for her WHACKING STICK! Not sure who she was thinking of WHACKING but she now has it just in case!!
Keep the prayers coming
Love Brandi
Tues Aug 21 9:45PM
This is an update to ask for prayers. Madelyn's breathing has become more labored. She is breathing 50 and 60 times per minute and is beginning to use her neck muscles to help her breath ie retracting. They are currently giving her a breathing treatment and also are giving her another medicine that I can't pronounce or spell. Please pray that breathing becomes normal again and that she continues to improve. thanks
Neal
TUES Aug 21, 7:45PM
Maddie has had an up and down day. She was cracking jokes at first, but know she has become very solemn. She just sits there and won't talk, barely shakes her head to anwser and just stares straight ahead. I believe she still has some virus and is still feeling those effects. She has had some vomiting this afternoon also. They have given her some medicine. She is still on oxygen and she had an episode where her oxygen levels where dropping this afternoon. The doctor says that she is still very critical and that the next 24-48 hours are very critical for Madelyn. Madelyn's lungs have to continue to get stronger as they decrease the oxygen she is getting. Please pray that this transition will be smooth, Madelyn's lungs will continue to get strong, and that she will begin to feel better. Tonight will be another long night. The doctor wants respiratory to come in every two hours and do therapy and get Madelyn to cough and breathe deep. So about the time she gets to sleep good they will be waking her up again. All that said we still praise GOD that she is off the vent and PRAY to GOD that she will stay that way.
Neal
Tues Aug 21 9:24am CST
Maddie's off the vent!!! Praise God!!!!
Mark (my husband)just texted and said she is "already cracking jokes". And apparently gave the nurse a high five!!! What a miracle...
Mylissa Horrocks
Habitat for Hope
TUES Aug 21 1AM
Maddie is being given Propofol, anestetic along with boost of Dilauted and Benydryl to help keep her calm. The Versed and paralytic are completely off! She is pretty responsive waking up and moving like a little newborn puppy scurring to find its mothers milk! She is waking about one time per hour looking for a familiar face! It's so good to see those big brown eyes even though glassy and starry looking. She is beautiful!
She can't talk so she is pointing and nodding. Once she was pointing at the bed by her leg and after countless questions with all no's, dad ask, "do you want mommy to lay beside you?" and she nodded up and down! She even tried reaching with both arms to give me a hug!
She has nodded to watch Cinderella and now Little Mermaid 2.
She is being very tolerable of the tube so far without pulling it out but she has shed a few tears out of fustration of trying to talk to us. She does say she is NOT in pain so that certainly makes us feel better! She has told us she isn't liking the catherter and the NG tube in her nose. I don't blame her...we let her know to keep resting and they are taking it out in the morning and she nods up and down to that!
Dr Raja is on call now and he will be attending to Maddie in the AM! Will keep you posted!
Brandi
PS the windows of her room inside and out are painted with words of encouragement including, thinkHOPE, Believe and Happy Extubation Day! As you can assume, we are hoping for great results in the AM!!
Keep believing!
MON AUG 20, 9PM
Maddie has been doing very well. Her chest X rays have improved and they have reduced her sedation in preparation for taking her off the vent. This is a very hard time for us because Maddie wakes up and she can't talk. She is confused and begins to cry. All that me and Brandi can do is hold her hand tell her to stay calm and the nurses are taking good care of her. We tell her and that she is going to be alright and that the tube will be out of her throat very soon and she will be able to talk again. They are hoping that she will be off the vent sometime tommorrow AM. The doctor says that they will let her get good and awake and very responsive and he will take the tube out and he said "PRAY to GOD that she can breath well enough on her own." He doesn't see any reason why this won't happen. Please pray that Maddie has a restful night and a that her lungs will do their job tommorrow. Please pray that she will regain her strength quickly. The doctors said if she comes off the vent tommorrow, we should be in the hospital at least 5-7 more days. Thank you all for your support during this time and please remember to pray.
Neal
SUN AUG 19, 6AM
Maddie has continued to stay stable on Sat and throughout the night with some occassional up and down in heart rate. I know last night she was awake and hearing us as her heart rate jumped to 180s and she had tears roll from her eyes. They will most likely go up on her sedation meds today I'm told.
I am going back to sleep for now but keep the prayers going for a restful day!
Love Brandi
PS a while back she ask me to put on the "Maddie's Favorite Things" list that her fav color is Pink and that she loves rainbows so I've updated the entire list for your enjoyment!
FRI AUG 17 11PM
Thank you for your prayers! Maddie has had a restful day with no setbacks or interruptions! We are alittle more at ease going into this time around just having gone through this before but the days are long.
Tyler and I got to watch High School Musical together in the parent room tonight! Oh how I was expecting Miss Maddie to be doing the same! I wish now we would have recorded it for her but I'm sure it will be on Disney a couple hundred times!!
My mom went home this morning for a couple of days and Neal's parents left yesterday and are back tonight. I want to thank Habitat for Hope volunteers and our church for the yummy meals provided this week! They are very much appreciated and most of all we are feeling very LOVED!!
Dr Lamma is on the floor and our nurses have been great in the ICU. They have been doing range of motion with Maddie's legs and feet and turning her from side to side every two hours as not to get bed sores!
I don't think we mentioned this in all the chaos on Wednesday morning but when Maddie was incubated she lost her TWO front teeth! They were already loose so maybe with the pressure from the CPAP mask they became more loose. We were told they touched one with the tube then the other just fell on its own! They brought them out to Neal in a tissue! So we had a good smile in the midst of our sadness!
Boy, won't she be so excited and maybe alittle confused to see those teeth gone! After all she's went through to lose these I sure bet the tooth fairy needs to come up with something extra special!
Continue to pray for a restful and event free night and weekend!
Love to all,
Brandi
PS the photo at top was the latest snap shot taken while laying on the couch watching TV! The family photo was taken in July for our church directory!
THURS AUG 16, 10PM
First of all I want to extend our condolences to the Montgomery Family. Kelly,Tammi, Casey, Taylor, Lillie & Lanie Montgomery are friends and members of our Life Group. Tammi's brother passed tonight at Baptist East as he suffered from stomach cancer.
Our thoughts and prayers are with you. We love you.
Maddie has done very well today. Nothing has changed and nothing has grown in the cultures thus far-Praise God! We continue to keep watch at all times over our girl and let her know how much she's LOVED!
I have spoke with Tyler today and he seems to be handling the situation with ease as he looked up as I spoke and then continued his thoughts with his head in a Star Wars magazine! He got to come in and see maddie for just a moment. he ask what all the numbers meant and then he ask how we knew all that?! HEHE
Emmy is doing super at Aunt Amy's, though I miss her so much, I know she's being well taken care of.
Please pray that Maddie continues to rest peacefully during the night. Pray that her T-cells recover quickly and the virus passes quickly. Pray that nothing grows from the cultures. Pray for the wisdom and competence of the doctors and nurses caring for Maddie.
praying for a peaceful night,
Brandi
PS Many have called, emailed and ask if there is anything you can do to help us...# 1 is prayer and #2 is that we love to have homecooked or even restaurant cooked meals from time to time! So for those of you from out of town who have ask to do something and would like to provide such a thing you could contact Habitat for Hope for a donation in honor of Maddie and they will see that a meal be provided! Their number is 866-443-4673. Or log onto www.habitatforhope.org We thank you for loving us!
WED AUG 15, 5:22PM
First let me say that I need to redefine what I said regarding Maddie's procedure she had. Maddie had a Bronchial scope done and NOT a lung biopsy which is something totally different. What she had done is this, they go in with a tiny tube with a camera attached and take pictures of the lungs. They squirt saline in the lungs, then pull back out as much of it, that doesn't otherwise get dispearsed, along with fluid in the lungs for testing. There are two parts to this test, the first part is taking a sample of the fluid and checking under a microscope for bacteria or viral germs which takes only a couple of hours to diagnose. The second part is taking that same fluid for a culture to see if it grows anything.
What we know from the first part so far is Madelyn has Para-influenza III. Also known as "croup". It is a contagious virus that is going to have to run its course. She also has gram positive AND gram negative bacteria.
Most kids just get one or the other but NO NOT Maddie she has to have both! It's so typical!
With the pos/neg bacteria though I will say her ANC is HIGH at 6600 so she has that to her advantage and also she is being covered by four antibiotics, Septra, Cephapine, Vancomycin, and some other mycine!
She is also on Solumedrol, a steroid (4mg per kilo of her weight per day) for the inflammation. That is on the highest end of what can be given as Maddie's CRP, inflammation level has went from 8.8 to now 12. (ZERO being normal)
Yesterday, Dr Furman came in and it was noted that we sign a paper as whether we would have her incubated should she need be. This was difficult to hear but it was a no brainer to Neal and I to YES, we'll incubate knowing that she's a fighter and we're not dealing with a cancer issue at this point. Our thought is that this is potentially something that can be resolved with time and well deal with what to do next later.
Overall yesterday Maddie stayed on the oxygen mask at a rate of 50-60 percent. She was really working hard and stayed laying with her eyes shut for most of the day with an occassional opening of her eyes to watch Lady & the Tramp and then Snow White. She ask to be held by Miss Mylissa Horrocks and then wanted her Aunt Amy until she finally just wanted back in the bed to rest. It really just wore her out at that point and there she lay with labored breathing for the rest of the night. Mr Mark Horrocks stayed the night with Maddie while Neal & I got some much needed rest in the parent room! Thank You Mark! From this point on we'll most likely take turns sleeping and watching over our sweet girl!
As of 10AM Maddie is now on the vent. This is the fourth time now but she is comfortably resting and now we wait...this is what we would like to have avoided but on the other hand the benefits of not watching her struggle far out way the risk at this time. Her little lungs are now getting to rest they need while the medicine does its job!!
Her oxygen is now down to 30 percent. She is on a paralytic so that she's not conscious, Versed to help calm, and dilauted for pain.
She should not have visitors as this virus is highly contageous to those who may be exposed. It is certainly a risk. So we thank you for the phone calls, emails, and guestbook entries of concern! We love you guys and know we are so very loved! I have always said that's one thing Maddie has always KNOWN is LoVe!! And boy does she ever!!
Tyler has been hanging out in the parent room and hanging out with cousins. Emily has went to stay with her Aunt Amy. We know that Maddie was now contageous for maybe even a week before presenting symptoms so please pray that the kids and us are protected as to not have extra stress in our life. Right?!
Well I must go and be with our girl now. Will update soon!
In His grip,
Brandi
Monday, August 13, 2007 5:03 PM CDT
Update 12pm
Madelyn has made it through her bronchial scope this morning. It was very scary because they told us that there was a good chance it would cause her to be put on the vent. She is now back in her room in ICU but is still coughing alot and having the breathing problems. They are not letting her have anything to eat or drink because they may need to put her on the ventilator today if she gets any worse. Now that they have the samples from her lungs they have started her on antibiotics incase that it is a type of infection. They have also started her on a steroid incase it is caused by a side effect of the treatment she was on. They should have initial results from the scope sometime this afternoon and the final results within two to three days.
UPDATE 3am
Madelyn has had another episode with her breathing and we are now headed to ICU for closer observation. More updates when we have them.
Mon Aug 13 10PM
We are drained from the days events...Neal has been up since I called him at 4Am to come to the hospital and I haven't had much sleep since then either.
Maddie had another coughing/difficult breathing episode again tonight which lasted about 35 minutes. It is so scary to watch and I must say I've broken down several times today. I've watched my little girl fight so many battles. She loves life but I KNOW she loves Jesus too! I have often said within myself that in this life I will have done my job if my children know and love Jesus and I really am comforted in knowing that so far both Tyler and Maddie love to learn about Jesus!
Over the past week Maddie has said and done some unnerving things like Saturday she looked over at a poster she made dad for fathers day and said, Dad, you see that picture of me? That's for you to remember me when I die and go to heaven. Then last night in the med room she went to pick out books that were all bible story books. She just speaks sometimes as if she "knows" something. Believe me when I say this is comforting that she loves Jesus but my maternal human side aches and hurts with tremedous pain in my heart to hear these talks and wonder of life without our fun loving free spirited little girl who will be turning 6 in December! She can't wait for her birthday to come! She ask us to buy her a calender about a month ago and so we brought home a High School Musical calander and she counts the days down as she x's them out!Speaking of High School Musical, she and Tyler are both looking forward to HSM2 on Friday! OH! how I hope we'll all be watching that together this weekend! We all love it!
Anyway, what I got on here for was to let you know to PRAY, PRAY, PRAY for Maddie during this difficult time. This could get much worse. Tomorrow is her biopsy of the lungs at 7AM. We did not hear from the Dr doing the biopsy tonight so we're assuming we'll most likely be up at the crack of dawn meeting him before the proceedure. Apparently, this is risky as Maddie is already presenting signs of distress in the lungs. They have assured us that ICU is aware of her issues and is on stand by.
With all of our prayer warriors on board I don't suspect any obstacles!
We have to get some rest now so we'll be sure to keep you updated in the AM.
We love you guys,
Brandi
Mon Aug 13 5:03PM
We were admitted last night after a trip to the med room with her breathing irregular, grunting and retracting. We were heavily concerned and insisted that they please admitt her and do more testing as we were just not happy with this coming and going home thing. Beth Kurt was on call and a CRP (inflammation test) was ordered along with a CBC and chemistry which was fine. The CRP however, was 8.8 (normal is <1). So obviously there is something going on in her little body.
Maddie really gave us a scare at 4AM. She woke up trying to cough then started to panic. She sat up on her bed holding her throat. Her Oxygen levels went down in the 70s-80s. Before we knew it there was 4 drs/nurses in the room. She finally settled and rested through the morning
Maddie had a CT and Echo this morning. The CT shows some interstitial fluid in dispearsed areas that are alittle more than the CT done two weeks ago.
There is a dr coming in tonight from LeBonneur to discuss Maddie having a procedure done at 7AM tomorrow for a lung biopsy where they will draw fluid from the lungs to check for a bacterial infection. This will determine whether to start an antibiotic or a steroid.
We have Neals parents in today healping us and food coming from Habitat for Hope so we are thankful for that. Thank you to those who have called or come by!
Maddie is having more trouble as the night goes on ao please PRAY right now.
Love Brandi
Monday, August 13, 2007 5:03 PM CDT
Hi there
We were admitted last night after a trip to the med room with her breathing irregular, grunting and retracting. We were heavily concerned and insisted that they please admitt her and do more testing as we were just not happy with this coming and going home thing. Beth Kurt was on call and a CRP (inflammation test) was ordered along with a CBC and chemistry which was fine. The CRP however, was 8.8 (normal is <1). So obviously there is something going on in her little body.
Maddie really gave us a scare at 4AM. She woke up trying to cough then started to panic. She sat up on her bed holding her throat. Her Oxygen levels went down in the 70s-80s. Before we knew it there was 4 drs/nurses in the room. She finally settled and rested through the morning
Maddie had a CT and Echo this morning. The CT shows some interstitial fluid in dispearsed areas that are alittle more than the CT done two weeks ago.
There is a dr coming in tonight from LeBonneur to discuss Maddie having a procedure done at 7AM tomorrow for a lung biopsy where they will draw fluid from the lungs to check for a bacterial infection. This will determine whether to start an antibiotic or a steroid.
We have Neals parents in today healping us and food coming from Habitat for Hope so we are thankful for that. Thank you to those who have called or come by!
Maddie is having more trouble as the night goes on ao please PRAY right now.
Love Brandi
Saturday, August 11, 2007 10:39 PM CDT
UPDATE Sunday Aug 12 10PM
Well Madelyn had another episode tonight and so we took her in to the hospital again. This time they decided to keep her for observation and tests. They went back and looked at the xray from Saturday and found that Madelyn's heart is slightly enlarged. They will be running an ECHO and an EKG. Tommorrow they will be running a CT scan to look for blood clots in her lungs and a type of pneumonia that does not show up on regular xrays. Please pray that they will find what is wrong and fix it quickly and that this does not lead to another trip to the ICU on the ventilator like it has before.
UPDATE SUNDAY AUG 12 12PM
Hey guys! Just wanted to let you know Maddie slept well through the night except for some moaning around 6AM that led me to check her temp and sure enough she again had fever of 101.7 under the arm. After some Tylenol she soon was sleeping soundly! The Drs order was to continue with the Tylenol no later than 12pm today and if she continued with a fever past that she is to come back to St Jude for another dose of IV antibiotic (in her central line).
She has eaten pancakes for breakfast and taken all her meds like the Big girl that she is and she is resting on the couch. She has even gotten up to play with her kitchen and worked on her crafts. We did have to miss Sunday school this morning and was hoping to go to our annual ice cream social tonight but it may just be that one of us stay home with Maddie.
Tyler will be returning home today! We are all looking forward to that as we miss him when he's away in the summer!
We have appts in the AM at St Jude on Monday then Tyler starts his homeschool co-op math class tomorrow afternoon, then it's back to St Jude for chemo (please say a prayer that the best thing will happen here) and then Tyler has basketball practice starting tomorrow night! WOW! I'll be shot on Tuesday!
I must go for now and we'll keep you posted!
Love Brandi
Neal, Tyler, Maddie & Emmi
PS NEW PICS IN THE PHOTO ALBUM!
UPDATE Saturday 10:39PM: Madelyn and Brandi are back home now. The doctor says that he feels that Madelyn's breathing and heartrate are caused by a virus and just continue to watch her closely. We must get to bed. Thanks for your prayers.
Neal
just a quick update.
madelyn has been coughing for a couple of days now. she developed a fever and said that she had a tightness in her chest around noon today. I took her to the hospital and they gave her an antibiotic and done a chest xray. her O2 stats were at 93 they said the the xray was fine and said that if she developed a fever after sunday afternoon to bring her back in. Tonight her breathing seem to become more labored and her heart rate very fast. Madelyn has been on the ventilator twice with episode's that started with these symptoms. Please pray that this does not happen again and that it is just a bug that will pass quickly. Thanks
Neal
Saturday, August 4, 2007 9:44 AM CDT
The best trip ever…
We are back from Chicago!
Well besides the little bit of car trouble on the way home we are home safe! The fuel pump went out in the Yukon in Marion, IL and thus leaving us to get a rental for the rest of the trip home but all is taken care of and didn’t keep us from still having the BEST TRIP EVER! The kids and I threw the football around in the parking lot waiting for Neal to make plans and we joked about having something go aloof every trip we take! (Just trying to keep the kids happy and occupied really!)
The trip took about 9 hours of drive time from Memphis, we stopped half way at my sisters where we ate lunch and visited while Tyler swam in the lake and the girls all played. We arrived in Chicago late Sat evening staying at the Hilton Hotel in Oak Lawn which was very beautiful.
While there we had a chance to visit the Hancock Building where we got to view the city and four other states from the 94th floor! Absolutely breathtaking, Lake Michigan looks more like an ocean! We got to ride in an Excursion Limo, a cab and a bus! After the video shoot that will air in November as part of the Thanks & Giving promotion, the girls and moms headed to the American Girl store and then to the Navy Pier where we met back with Tyler, Neal and Emily. We ate dinner outside at Bubba Gump’s which was really cool and had wonderful food! During the day while Maddie and I were at the video shoot Neal, Ty and Em went to the Lincoln Park Zoo, saw the Bulls stadium, Cub’s stadium and the White Sox stadium which made for a memorable and exciting day for Tyler especially!
Needless to say we had a really good time and voted it our new favorite city to visit!
Maddie has been doing very well. She felt so good on the trip and never complained! She told us many times how much fun she was having in Tatago! HEHE
She just had her 8th week of TemKid tonight in the Med room. She’s been coughing and sniffling some but nothing that’s slowing her down any! For 8 weeks now, thankfully she has not had to have any blood or platelets! Yeah for Maddie!!
Tyler just completed his three weeks at theatre school this past Friday. He loved it so much and did such a great job in the final production on the last day! He had the punch lines and had the entire audience laughing! We are so proud of him! It really has boosted his confidence as well and hopefully get him out of his shyness a bit! He will be taking a Teens in Theatre class this fall as well as going to a co-op Math class. We will begin home schooling again soon, Maddie will be starting Kindergarten! Until then, Tyler will be going to his dad’s for a couple of weeks and Maddie is going to spend the weekend with Granmonna and Pa! “Without the baby, she says!” HEHE
Well I just wanted to update about our exciting trip! Will update soon!
Love to all,
Brandi
PS Remember this is the Tax Free School Supply/clothes weekend! I think I might almost rather pay the tax than fight the crowd! HEHE But as you may well know I’m the one that gets up at 4AM the day after Thanksgiving! HEHE
Thursday, August 2, 2007 8:16 AM CDT
Good Morning!
Here are the results of Madelyn's scans....
CT of the chest and abdomen- There is some cloudy spots (not tumor) on one lung, may just be from a viral infection maybe and the primary tumor has "slight DECREASE"!
MRI of the head-there is one tumor in the back right, one on the side left and one on the right orbit all from relapse in January 07, they are STABLE and "slightly DECREASED"! She has a bit of sinusitus.
MIBG of the entire body that is a specific scan for NB is STABLE with "slight DECREASE"!
BONE MARROW ASPIRATES-are CLEAN! of courase we know this one depends on where they stick the needle but we can rest assured that it is not progressed!
PRAISE GOD for Madelyn and our faithful prayer warriors! We thank you guys so much for continuing to keep up with our precious girl and our families journey! We love your encouraging words and sweet spirit that surrounds us! Keep up the good work and watch God's work in progress!
loving our prayer warriors,
Brandi
Saturday, July 28, 2007 8:57 AM CDT
Hi everyone!
Just wanted to write a quick journal to let you know we are headed to Chicago this morning!! Maddie is going to do a photo shoot for Thanks & Giving on Monday with Bernie Mac! So we are heading out two days early to take advantage of the city since we've never been there as a family!
Well we gotta go we'll talk again and bring results of scans to you on MONDAY or TUESDAY!
Love Brandi and Beamon family!
Sunday, July 15, 2007 11:38 PM CDT
UPDATE on SCANS: Friday July 20th- Maddie had a bone marrow aspirate yesterday and is having her CT today. She has an MIBG scheduled for next Thursday and an MRI on Friday. We will get SCAN RESULTS on MONDAY 30th! This will be a VERY important date for all of us prayer warriors so PLEASE continue to pray for Maddie and stay tuned to see what God is doing in our lives! We love you all and thank you for your love and prayers!!
hugs,
Brandi
PS She is feeling really well with the exception of her back where they purged the bone marrow yesterday but NO complaints of the head or legs since Friday evening!
Sunday July 15, 2007
Hi there!
Well the Tooth Fairy arrived and was very kind to Madelyn! She left $5.oo for Maddie's FiRsT TOOTH! WOW! Inflation has really went up since I was a kid!HEHE
We were alittle worried this past week with Maddie, 6 nights in a row she complained of pain on the right side of her forehead and some pain in her legs but Saturday evening and tonight she has been pain free! Praise Him!!
We will talk with Dr Furman Monday and she will have her 6th week of this new TEMKID chemo. We have a CT scheduled for Thursday and MIBG is scheduled for next Thursday.
We enjoyed an evening at the Hope House Saturday night celebrating the 1 year anniversay of Habitat for Hope! Maddie got to do alot of face and "body painting", carnival games, bounce houses, play on the new outdoor play ground, watched the movie Cars and she loved watching a couple of girls do some jazzy little dance routine while the band played! Tyler had fun but spent most of the time reading his book in the indoor air conditioning. Emily was to say the least spoiled rotten by all the attention! She was loving it! She is very much a content and happy baby and is in the smiley/giggly stage right now!! It was really nice to visit with the many volunteers and see many of the St Jude families!
Well I have to go Maddie is wanting to be rocked!
Love to all,
Brandi
Wednesday, July 11, 2007 10:20 PM CDT
a new milestone...
Just wanted to share some special and exciting news! Maddie has lost her very FIRST ToOtH! It has been loose for some time now (about a month that I know of), well Grandmonna was here today and Maddie ask her to try and get it and wha-la it was out! She told her to go spit and before she could even get to the bathroom she turned and looked at all of us with this smerky grin as she had put her tongue in the open space! She turned right around and started doing the happy dance!! I filmed her the rest of the time grinning and talking to people on the phone about this tooth she is so proud of!
Also Maddie received her new wig today! It is a light brown, just alittle darker than the honey blond one she had and we had to send back. It looks so cute on! She has been fixing and styling it ever since! I catch her looking in the brass door handles as if it were a mirror!
Have a good night!
Love Brandi
Friday, July 6, 2007 8:15 PM CDT
Hey there!
Well the past week has been yet another filled week of beautiful memories! It was Neal’s 30th birthday on the 30th, making that his GOLDEN BiRTHDAY! We took the girls to Granmonna’s while Neal and I headed to Nashville for the night where we attended a dinner/theatre at Chaffin’s Barn theatre! I surprised Neal by having 3 of his best friends and their wives join us!
Before leaving for Granmonna’s, Maddie and I attended a Breakfast with Cinderella and the Fairy Godmother! She dressed up like her favorite princess, Ariel and they ate mini muffins, strawberry’s and juice together!
The top photo is one of Maddie’s new wig that she loves sporting in pigtails! I just got 7 rolls of film developed and uploaded into my computer so I can’t wait to get some new pics up for you guys! The baby is getting the cutest little fat rolls and double chin! The only time in your life when that’s cute huh! HEHE
Speaking of the baby! We are delighted and overjoyed to tell you we now have a new name chosen for our baby girl in honor of her big sister Madelyn who named her…
Her name is...
We are calling her Emmy! The process so far has been to contact Vital records in Nashville to have the form sent. It has been signed and notarized and a cost of 15 dollars was mailed! As long as the child is less than 1 there is not much involved! Next will be sending off for a new SS card. I want to say thank you so very much to all who have sent or given baby gifts for our sweet girl and I sincerely apologize to those who had gifts monogrammed with the previous name.
OK so back to Maddie for a bit…we just found out another little tid bit…Maddie is yet another “first” at St Jude (as a NB patient) to be put on this Phase II study that we are currently on. There is now another NB patient on the study as well, our friend Evan Thomason. You may recall we had a pic of the two of them up some time ago on the top of the page. He and Maddie would draw pictures on the windows while inpatient and get to spend time playing while at the Hope House from time to time! The other three before her on the study are not NB patients.
She is feeling so much better with this new chemo regimen, her little eyelashes are starting to grow back as well as eyebrows and some fine hair on her still bald head! She is very active playing with her baby dolls, her Dora house , doll house and polly pockets lately. We spent some time with Miss Donna and her grandkids at the mall last night where Maddie made her very own purchase at the Disney store with her own money! She is showing much interest lately in learning about money and doing math! She will be starting Kindergarten this fall. I am not sure at this point if we’ll home school or attend elsewhere just yet but she is so excited to start!
Well Take care and God Bless!
Brandi
Wednesday, June 27, 2007 7:58 AM CDT
Wk 3 of Round 1 TEMKID
trying to make sense of it all....
Maddie just had her 3rd dose of TEMKID phaseII chemo in the Med room yesterday. She and dad were able to go while baby girl stayed home napping!
For the past week the only major symptom has been constipation which is finally being relieved I believe with Docusate twice a day and Senna once per day. After having labs done, one of her electolites, Phosphorous is low and has been trending downward for some time so she has been put on phosphorous tablets twice per day. She is not liking it though so we will see about getting liquid to try. Apparently it is caused by all the chemo she's been given.
Speaking of having much chemo...WOW. I was just thinking the other day how much her little body has been through and the many emotions just flowed a river of tears. Time has went by so very fast since we first started and I find myself wondering just how much time might be left with our precious fun loving and entertaining little girl who has so much life left in her! I feel as if I'm planning for my own death and I'm trying to have so much in place first but then I just make list of things to get done and the list just grows longer and I run in circles of not getting much done, I guess just unsure of what to do to plan for such things but apparently there's no way to plan for such things so I'm told but still there seems to just not be enough TIME. I have a constant phobia in my head of her not being here with me and it is starting to eat a hole in my soul. I find myself sheltering those who love us most from getting too close or caring too much as if it might help ease their pain in some way. I love her so much that I am constantly finding ways to spend every second touching her and trying to watch her every move as if trying to capture the images forever in my head. Neal and I have said many times we wish we had a constant video of her every move! WOW! She continues to bring us so much joy each and every day!
Don't get me wrong I am grateful to have our princess here and I certainly enjoy and never take advantage of the moments in our lives whether it's something silly she says to dad about me or her coloring my face with crayons....I am always reminded of so many kids we've lost to this relentless disease now over 20 that we know of personally that I can't help but be a bit scared and torn by now reaching our 13th chemo. My heart desires to make her the happiest child at all cost and I feel failure when she hurts and cries out in pain like this past week when she's in the bathroom. My heart desires to take her to the deepest oceans or the highest mountains but then is that for my own selfish reasons to have the memory. What does SHE gain from it all...I know she's secure and KNOWS just who to turn to when she feels bad and I do keep that in my heart when I hurt but I just can't get past the why? I turn to scripture but I really feel stepped on as I used to feel as if I was so close to God. Though I don't put my religous thoughts out there outspokenly I did and still try to do all the right things but after the relapse it's been tougher to accept what I should do to please God and feel now I'm doing things to please God because I should and not because I want to like before. I just feel so let down and I'm struggling to find peace with God. My focus seems to be to please myself and Madelyn and our family more than ever as if it might be our last moment.
Well I really have put my heart and soul on the line here so please be sensitive to comment as I just sometimes am trying to make sense of it all. I get filled with many emotions that I just have to put into words that hopefully one day I can reflect upon and maybe see what God has done with my life!
I need to go Maddie just woke up and man she is so beautiful this morning...last night, I guess just tired and worn out from riding her My Little Pony bike around the apt complex to the park area (she had her first wreck by the way! she's OK!) and playing our new favorite game of Blokus outside on the patio, she looked so weak and frail with dark circles around her eyes but NOT today-she is perky and full of herself saying, "Hi, I'm Hungry! Nice to meet you!" (as she shakes my hand) HEHE.
These are the best days of our lives!
Love Brandi
Wednesday, June 20, 2007 11:11 PM CDT
WK 2 of Round 1 TEMKID....
Hi there!
Well I had a wonderful birthday as usual! (It doesn't take much for me to be happy, though my husband says me and the girls are high maintainence!HEHE I'm not sure what he means!!LOL The kids got me a beautiful blue butterfly necklace and matching bracelet! Dad was telling me about him and Maddie going to Hallmark when they came across the musical cards and how maddie danced with her fingers pointed in the air to the tune of "It's a Girls night out!"
Every time I open that card she just shakes and dances around the house! SMILE! We went out to dinner with the Montgomery's to a new restaurant in Bartlett called Yazoo's! I had Salmon which was the best I'd ever eaten but the service wasn't the best. I guess that really wasn't important but now you know for future reference if you're eating out in Bartlett!HEHE
We went to Huntingdon to see Neal's dad for Father's Day, by the way Ed and Mark, Neal got some new iron's so he's now ready to relieve some stress on the golf course!
Maddie has been tolerating the first week of chemo very well! She had one episode of nausea, two times lips burning, and two times waking in the night sobbing and wanting to be held.
We had clinic yesterday (Tuesday) before getting her second dose of the TEMKID. Her platelets, hemoglobin and ANC were very high! By the way did I mention that with this particular chemo, there are NO G SHOTS!!! That means Madelyn is not having to get the 12-14 shots she was having to get before with the last 4 rounds of chemo! How wonderful is that!! I have noticed that her little eyelashes and brows are even starting to grow little stubbles of hair! Exciting but just pray that the chemo is being effective for the right reasons! We will take bald and beautiful anytime as long as the chemo is doing what it should and that is to kill all NB cells in their tracks!
We have had VBS this week with tonight being the last night. Maddie made some nifty flip flops out of brown foam, white shoestring and duck tape to hold the sting in place on the bottom (I'm quite sure they didn't have duck tape in the days of Jesus but you get the idea!) They ate bread and water every night for snack (not what she had in mind!LOL)
We talked to Tyler tonight as he is enjoying the month at his dad's! Madelyn was in tears tonight as she is missing him but she's better after sharing their VBS stories and catching up! He'll be going to camp on July 1-7 so we're now preparing to gather stuff for that!
Please continue to pray for Madelyn! Oh one more thing before I go Madelyn did two photo shoots this week. One for a Partner in Hope brochure for St Jude with a couple who have been donors now for 15 years and the other for the October patient of the month which means her photo and story will go out to all the Partner in Hope donors the month of October! If you would like to become a Partner in Hope in Honor of Madelyn please visit the St Jude website at www.stjude.org and you'll know your helping fund the research of a little girl you know and love! If you've followed our story you know just how much has went into saving the life of our little girl and we are so very thankful of the time we have with her! She is such a joy, blessing and inspiration for me each and everyday! We just love her to pieces!!
I am in the process of getting more pics up!
Love to all,
Brandi
Wednesday, June 13, 2007 10:24 AM CDT
A new treatment, a renewed HOPE…
So sorry I didn’t make it to a journal last night as planned. The day was busier than expected! Maddie is starting a new treatment. We met with Dr Furman on Monday and was presented with a couple of new options along with the option of resuming the current treatment which would have been round 5 of cyclo/VP-16. Neal and I along with the advice of Dr Furman have decided to do a PHASE 2 TEMKID study. It is a COG study meaning it is multi institutional and was Oked by the IRB in Sept of 2006 with Sherie Spunt as the overseer. There are 3 other patients here at St Jude on this study and there are only 10 nation wide so far. The study is for up to 10 at St Jude and 75 nationwide so it is in its early Phase 2 stages.
It is a chemotherapy drug called Temsirolimus. It will be outpatient in the Medicine room. It is administered IV one day a week (Tuesdays) for a one hour infusion along with 30 minutes of IV Benadryl beforehand to offset side effects of nausea. Since this is a PHASE 2 Research protocol we have to monitor closely and keep record of every little incident on a special calendar given to us. Things such as nausea/vomiting, diarrhea/constipation, pain, dry mouth/sores in mouth.
Being a research study means alittle more work on our already hectic life but this was our decision to try this so we are more than willing to make it work. The four rounds of Cyclo/VP-16 we’ve done has been effective in keeping the cancer stable since relapse to her leg and skull but we feel we need more response and progress. We’re afraid that the tumors will eventually outsmart the same chemo that was being given. So hopefully with a new chemo like Temsirolimus which theoretically is supposed to block the protein that is involved in NB cell growth we can have a renewed HOPE of these NB cells not growing and eventually becoming Ganglio (dead) cells!
Maddie slept during the entire infusion yesterday (mid day after Benadryl of course!) We went to Bella Cabella afterwards to take back Maddie’ new wig she had gotten a couple of weeks ago. We have to decide whether to get a darker color hair or if they can get the mesh on the inside a lighter color since the problem is the dark brown mesh showing through the hair when pulled up in pigtails-her favorite style! She felt really well last night with no complaints and has just gotten up for the day! We plan on doing something fun today or tomorrow with friend, Quincy Russell who is in town for chemo as well.Quincy is a 5 yr old NB relapse patient from Kentucky. Please visit him at www.caringbridge.org/visit/quincyrussell.
We also have another issue that has been weighing heavy on our minds. It is totally unrelated to our princess Maddie but on our new princess baby girl. I call her this for good reason we are trying to come up with a new name for her. Maddie likes the name Ansley but says she doesn’t want it for her baby sister’s name and it frustrates her each time it’s mentioned and Tyler and many other family members seem to have trouble with this name as well. (Saying it, spelling it seems to be topic of conversation) With that said we are in the thought process of changing baby girls name. She is looking like an Emily Madison or a Molly Kate this week! The paper work is here and our sweet tempered baby girl is 3 months old now-we will keep you posted as we are ready to get this behind us and get this baby girl a sweet solid name!
We do not have to report back to St Jude until clinic visit on Monday! I will be celebrating a birthday on Friday and dad’s day is Sunday! Neal says I got a steering pump for my Birthday! HEHE
Love to all,
Brandi
Tuesday, June 12, 2007 2:36 PM CDT
Need a vacation from our vacation…
We are back from our East Tennessee vacation and we are TIRED! First off we got down there safely! Before leaving on long trips Neal always has a thorough check on the vehicle ie oil, tires, brakes etc. This time we had all four brake pads changed, tires balanced, rotated! Well, we got to leave earlier than expected on Wed about 10:30AM when Neal returned home from work getting us to our cabin and meeting up with Neal’s family about 6PM! The kids rode beautifully! The baby slept off and on but never fussy! Maddie stayed awake the entire time watching movies and we all played road games for a couple of those hours! Tyler read and watched movies as well most of the travel time. We wrote down all the state license plates we could find and played What critter am I where one person thinks of a critter to be and gives one clue for others to guess and keeps giving clues till someone guesses and then becomes the critter!
FUN TIMES!
So anyway, we get down there, ate some corn, potatoes and chicken and then everyone loads up in the Yukon and van and heads to Cades Cove (my in laws had already been there twice that day!) As we get down the driveway our steering locks up…we pull into the Exxon on the corner to put in power steering fluid and still no turn of the wheel. Neal calls a mechanic and no one shows so it’s now about 8:30 EST and we head back to the cabin. We found the list of emergency cabin numbers and called the mechanic on the list unknowing if they would be open this late but sure enough they were open till 9! He put us ahead of 8 others at 7AM the next morning and we received a whooping $430.00 power steering pump and flush by noon! Just in time for the family to arrive back at the cabin from Cade’s Cove and head back again! (I told Neal he obviously got the wrong thing fixed before we left!) We had picnics everyday, we went creek stomping where Tyler fell several times from the slippery rocks and even lost one of his crocks but was later picked up by a creek swimmer down stream! Maddie held tight to daddy’s hand as she paraded around from rock to rock in her little hula girl bikini! She had such a good time! We did see a bear and stopped to get pics and video of course! This was my first bear sighting so it was pretty cool to see! Of course my in laws live to see bear in the mountains going to Cade’s Cove about three times a day! On the way home they saw a mamma and three cubs also!
We went high up on the mtn this time to Newfound Gap! We went into Gatlinburg one part of the day and walked the strip (too hot though), took the kids to Ober Gatlinburg, we drove up instead of taking the tram this time, we only had time for Tyler to ride the Pirate ship, Maddie enjoyed some chocolate fudge and Tyler some Dipping dots! There was a water wishing well there with a sign that read For the kids of St Jude Children’s Hospital. So the kids made a wish and threw in some money! We went one night into Pigeon Forge where we had an Old Timey photo made! The baby looked so precious in her little bonnet and long dress! The 3 BR 3BH cabin was super nice and the boys really enjoyed the downstairs game room with pool table, foosball , darts and Disney channel!
The baby slept really well at night 11-12 hours! Always a blessing!
Before leaving Knoxville we had a chance to meet up with Ryan Breedlove and his family at the Cracker Barrel! We had a great time catching up and visiting with them!
On Saturday we stopped in Nashville and stayed the night with my friend Emily. We went to dinner at Texas Roadhouse and then she and her Fiancé, John took Tyler and Maddie to the Carnival across the street while Neal and I took the baby back to the condo for her bedtime! Our family went swimming when we got up on Sunday. This was the baby’s very first swim! She loved it for every bit of five minutes! She was so tired so I wrapped her in a towel and off to sleep she went for over an hour in the cool shade! We then went to eat at Maddie’s fav restaurant for lunch Snappy Tomato Pizza for some chocolate pizza! They even celebrated my birthday complete with cake and present! (Though the dinner was plenty) Thanks Emily and John for making it a special night for us all! We had a wonderful vacation!!
Now we are back home and RESTING is not an option like we’d like! We had clinic visit on Monday and were presented with new options. We are in the med room now getting chemo but about to leave. Please check back tonight for a new update on Maddie’s new treatment plan!
Love to all,
Brandi
Friday, June 1, 2007 11:21 AM CDT
Hi to all!
As previously stated by dear friend, Mylissa, scans are STABLE!! We met with Dr Furman and of course it was a nice relief not to have the whole entrage of clinic come in when giving the news of scans! As seen in the past, when things don't look well the nurse, nurse practitioner, social worker, you name it seems to appear out of the woodwork! This time it was just Furman and two Medical students. I imagined what must be going through their minds as they stood intently watching Maddie with her bald head and drowsy manner as she lay on the bed getting results of such a horrible disease we often call "THE BEAST". I just kept thinking I hope these are the smart ones that will actually come up with the CURE! I mean afterall it is frustrating that after all these years (25-30 )we still aren't that much closer to saving the lives of these precious kids.
I ask that you please remember our dear friend Landon Pitre and his family as he earned his heavenly reward this week and services are today. He battled this beast for 3 and a half years diagnosed just 3 months before Maddie. He was brought to St Jude after katrina flooded his hospital. He was 5 years old.
Maddie was unable to do Bone Marrow aspirates this week due to low (37,000) platelets (need to be 50K for aspirates) We will not do them this round since all other scans show stable and will do them after two more rounds of chemo should that be what we decide to do after we return on Monday the 11th after our Smoky Mtn trip! Dr Furman threw around the possiblity of looking into differt chemo options or doing more rounds of the cyclo/VP-16. We'll see!
For some wonderful news about growing up...Maddie has her first loose bottom tooth, and another on top! When we noticed it Wed night dad, baby, Maddie and me were laying on the bed surfing the internet and she was so excited she jumped up and hugged us all and honestly just couldn't contain herself! She called the grandparents (it was 10:30PM)to tell them the great news! She says she wants everyone to know her excitN' news! She said she hoped the toothFairy was going to bring her a bracelet!HEHE
Love to all,
Brandi
Tuesday, May 29, 2007 0:40 AM CDT
UPDATE Friday June 1st:
Madelyn's MIBG and MRI were stable, praise the Lord! Bone Marrow Aspirates will not be taken this time, they will wait till next scans. The Beamons will travel to the East TN mountains with Neal's family for a short vacation next week.
Blessings to you!
Mylissa Horrocks for the Beamons
good morning to all!
Well the holiday weekend brought much food, fun and fellowship with friends! Friday evening Maddie had a sleepover at the Hope House celebrating Bella Horrocks' 7th Birthday! They had a blast playing dressup, making photo albums and watching Parent trap on a huge projector screen OUTSIDE! It was just like being at the Drive-in! Pretty cool! The baby and I stayed over too since Maddie had to be given a shot that evening. Of course she wanted us to go home cause she said it was no fun with mommas there!HEHE She had a great time anyway!
Saturday evening we had fun visiting some new families to St Jude at the monthly family night at the HOpe HOuse!
As for Maddie, she is feeling pretty good. Her eyes look sunken. Her skin is pale. Her eyes are shadowy. She complains of occassional headaches. She is holding her weight at 37 lbs though only cause she's on an appitite stimulant daily! She is very tired and ill when having her treatment and the two weeks after when her counts are down. As for this past week with counts up she is fun loving and just gives the biggest hugs and kisses! She says yes-mam and no-mam and even dances in the living room! We have a trip planned next week for the mountains where we'll be staying in a cabin with Neal's parents, sister's family for four days! Of course this is all dependent on Maddie's scans. Please pray for scans to be improved!
Her scans start today-Tues, Wed and Thursday of this week. We will get results on Thursday. I won't lie, I'm nervous about these scans. I guess because of a bad dream I had the other night that is weighing on my mind now.
I just ask that you please gather everyone you know, your church, families, friends and strangers and pray for Maddie! Pray for our minds to settle!
Maddie will do another photo shoot on Tuesday evening this time for the St Jude Marathon coming up in Decemeber! If you or anyone you know is interested in running/walking for Maddie let me know!
Well I need to go for now as it's 2am and we have speech at 8am then sedation to follow!
Love to all
God Bless!
Brandi
Friday, May 18, 2007 6:49 AM CDT
Morning...
We finished R4 chemo last Friday. Hope you moms had a great Mother's Day! We spent Mother's Day with both mine and Neal's mom and our families! We enjoyed having a field day at Neal's parents, the kids got to see how far each could jump, we played badmitton, volleyball, and various games all day in the beautiful sunshine and breeze! Madelyn was especially feeling good as her favorite thing was to play tennis while wearing her little white skirt and pink stripe cami she had gotten at the Limited Too! A new favorite store of hers now that she met a sweet new friend there (and we were extremely thankful for the discount Katie! You ROCK!) The kids and Neal gave me some really nice gifts among them were a CD and Star Bucks card from Tyler, a "Cherished" Willow Tree statue from the baby, a silver "Mommy Bracelet from Neal and Madelyn gave my a large square frame with an 8X10 insert that displays one of her beautiful drawings of a rainbow complete with clouds, raindrops and money pots on each end and our five member family drawn in stick people under the rainbow. They are complete with dad's gotee, me with my flippy hair, she in her skirt and long brown hair and Tyler in his fav color green shirt! Then there's also a 4X6 insert under the drawing with mine and her picture from our trip to disney! It was priceless! I have a wonderful family and feel very blessed to have them and to be their mommy and wife! I LOVE YOU GUYS SO MUCH! Thanks for making Mother's day so very special! Thank you too to those who sent me cards this day as well! You guys are too much!
So far we've gotten 2 units of platelets with this round, one being yesterday and then a unit of blood last night til 2AM! Now this morning we are back over at St Jude for fever of 102.9 after being home just 5 hours! I'm sure we're going inpatient. Neal had already left this morning for work so I think this was my first trip getting all three packed and ready, fed and out the door completely by myself! Not sure if this is a good thing or bad-hehe NOW It'll be expected!
Well I must go now and will check in with any changes!!
Love Brandi
Thursday, May 10, 2007 12:18 AM CDT
Remembering moms....
All is going well this week. We will be finished with R4 chemo on Friday morning. We've had a fun week being inpatient with lots of fun activities going on! We got to spend some time with our St Jude friend, Quincy Russell who is also an NB patient like Maddie. We've made many crafts, painted wooden snakes and beautiful glittery swans, and today we had a silly string war with the nurses!
Maddie would like to let everyone know that today is one of her best friends BiRtHdAy!!!!! Bella Horrocks is 7 years old! She also has another bud, Nash Stewart who has a BiRtHdAy as well! Happy birthday Bella and Nash!! We love you!
We would also like to inform you of a Special Mother's Day tribute that will be airing LIVE on the TODAY SHOW, Friday May 11 at 8:00AM CST. It is featuring our St Jude friend, Brooklyn Graves-Bingle and mom, Danielle! You can get a glimpse of their story on the St Jude website, www.stjude.org You're heart will be truly touched by their story!
Also I would like to say Happy Mother's day to my mother and to all moms, Hope you have a wonderful day as well!
Love,
mom to Tyler, Madelyn and Ansley
Wednesday, May 9, 2007 3:38 PM CDT
Hi there!
We are inpatient as of Monday morning and have finally after 5 weeks between last treatment, been able to start our 4th round of chemo (cyclo and VP-16). Maddie is feeling great and looks well too! Her little eyelashes have completely fallen out now (well except for one long lash that just hangs on!)
We have been doing some fun little things while off. We had a girls day and went to a special "for girls only" boutique here in Memphis called Sweet & Sassy! There you can get a mani/pedi, hair cuts and up-do's with sparkles, make-up and accessories, they even have dress-up and a runway where you can strut your stuff while watching yourself on the big screen! Maddie got her nails painted with five different neon colors with white tips! She's always been fascinated with rainbows and all colors!
We spent some time at the local mall where we sat and shared an Aunt Annie's almond pretzel with icing glaze (her choice)! Yummy! It's not often that she tries something new especially with a nutty texture so it's worth noting! hehe
Did I mention that she had her first manicure and pedicure a couple of weeks ago! She has always wanted us to go and do this but I was always concerned about the strong fumes. Well, the five of us went on a slow week day! Dad took some great pics of the day! Needless to say Tyler was pretty bored with that part of the trip (I even got a pic of that to!)
He and Neal went this weekend to the midnight showing of Spiderman3.
I was able to do an interview at the Mother's Day event yesterday hosted by Sag Harbor while daddy stayed with Tyler and the girls in the room! I was humbled to see mine and Maddie's pic posted all over the St Jude walls and elevators this past couple of weeks for the SH promotion! What a nice surprize! We had a nice brunch with just the moms which made for some much needed uninterrupted conversation! The mothers received many nice gifts including a purse, princess cut diamond earrings, two nice tops and a make-up bag! Thanks Sag Harbor and ALSAC!
The baby had her first set of shots yesterday as she turns 2 months! She did well only crying after the last shot which was said to really burn. I put emla on and started the Tylenol before going. She's doing great and still slept her usual 7 hours through the night! She now weighs 11 pounds 13 ounces and 22 inches! She's filling out and getting those sweet little rolls on her legs! She looks identical to Maddie as a baby!
We have had some problems with our computers lately, the screen cracked on mine and Neal had to recover his hard drive so all pics are on disk and I have not had time (huh?) to get new pics uploaded!
gotta go for now-baby is awake! Love Brandi
Sunday, April 29, 2007 11:17 PM CDT
UPDATE: MON APRIL 30
thank God for sleeping babies...
What a long day! First of all, Ansley slept 7 hours before waking last night then slept another 5 taking up most the morning at St Jude which did make things alittle smoother! Maddie had her MRI this morning and the results are in...Just reading the report, Dr Furman says that spots in the head are STABLE. Not the news I'd hoped for but better than the alternative!
The surprize of the day came when our nurse, Justice gave us our counts, Maddie's ANC was down to 700, her platelets are just at 22 (need to be 50) and her Hemaglobin was just 7.2 which meant she needed to come back later for blood and of course she couldn't go inpatient today and start her chemo treatment due to low platelets.
We will get labs again on Thursday and go from there with the possibility of starting then. Please cont to pray for her counts to recover quickly.
Baby's asleep-I'll do the same!
Maddie is feeling great tonight, she can't get to sleep cause she is laughing and being silly with dad!
Love, Brandi
********************************
Sunday, April 29
Hello to all,
We've had a tiring but fun week and weekend! Let's see leaving off from last Tuesday...Tyler had his dentist appt and then a physical at the Ped where he was due for a tetnus sp? booster! Ouch! His arm was pretty sore but now he's good for 10 years!
Thursday, Maddie had a 5 hour photo shoot with Marlo Thomas as part of the Thanks & Giving promotion that will be gearing up again in the fall! She will be everywhere nationwide so be on the lookout for her smiling face as she was in FULL force that day and loving the camera so I'm told!
While in Jackson Friday evening we ate at Maddie's favorite eatery, Snappy Tomato Pizza where she had cheesesticks and 3 slices of chocolate pizza! On Saturday the girls and dad and I went to check out Once Upon A Time(a very girly girl boutique and party place)as Maddie's next destination for her 6th Birthday Party (which isn't til Dec) but hey a girl needs time to prepare for such events! hehe then we had dinner with the Montgomery's from our church where Maddie played her little heart out with their four girls!
After church this morning we spent a few hours at paint a piece working on some priceless works of art! Maddie painted a plate with dad and Ansley even got her feet wet (painted pink) for some sweet prints herself! They are the sweetest little feet at just about 2 and a half inches long!
We had our usual Life group tonight where Maddie got to play with several of the kids of the 6 families in our group! My mom is here with us tonight. She came in just as the baby had started screaming. She only cries when she's hungry. (I guess all other needs just get taken care of before the crying can begin!) We have come to realize since yesterday that she is needing more milk to fill her growing tummy now! So grandma got to feed her, burp her and put her sound asleep!
Maddie has her MRI of the head and orbits Monday AM. We will most likely know results by Thursday. We are scheduled for admission on Monday afternoon for her 4th round of chemo. We will be inpatient until Friday. Please continue to pray for her continued quality of life and overall complete earthly healing! She feels really good right now with occassional tummy pains. She is taking a multi-vitamin daily, Ambertose which is a supplement we give her, Septra every M,T,W, Periactin which is an appitite stimulant, and Zertec for allergies. I'm always happy when there's NO PAIN MEDS to be given!!
Well I have to get some sleep for our long day ahead!
Love to all, Brandi
Sunday, April 22, 2007 10:09 PM CDT
UPDATE: TUES April 24
We had clinic yesterday and all is well except that we had to return later for platelets but those are the last thing to recover so it's expected. Dr. Furman is giving Maddie the week off and we will return next Monday (April 30) for clinic and admission for round FOUR of Cyclo and Etoposide.
We just pray now that she will begin to make platelets on her own so that the next round can begin on schedule.
As for our week off, Tyler has a dentist and physical checkup this week. I have my 2 month post/op OB visit tomorrow and Maddie has an all morning photo shoot scheduled with Marlo on Thursday!
We just had a mother/daughter photo shoot this past week for Sag Harbor clothing. They have just become a new sponsor for St Jude and are getting a special ad ready for Mother's Day! Sag Harbor clothing is found at JCPenney. I'm not sure but I'm guessing it's sold at other stores as well!
Well, I'm heading to bed now, the baby has been very fussy last night and today so I've been pretty tied up consoling her most all day and now that she's sleeping I must be too! (I'm hoping she isn't getting colic!)
Love to all,
Brandi
Sunday, April 22
Whew...Finally for the first time in 7 weeks I've actually found the time (and energy) to sit down and actually put some real thoughts to paper (well computer screen)!
Just so you know things have been going pretty well with having the three now! There is just no time for breaks much and when there is it's just enough to get a shower or get something to eat! There's no such thing as long talks on the phone anymore unless it's while in the car!
Baby Ansley is now 7 weeks old and growing alittle more fat if you will! She was so thin and fragile looking compared to the other two! She had her first smile one day before turning 4 weeks old and she is now grinning with a wide open mouth and almost laughing! SHe has a smile that just melts my heart! I am just so in love with her and having her here! I may not have much free time on my hands but I wouldn't take a thing for what I do have! I'm just loving being a mom of THREE!!
Maddie has completed her 3rd round of chemo after relapse and all the fever and side effects that go along with it. We were able to leave town on Friday after spending the day at St Jude getting platelets. We took the kids down to Hot Springs, AR where we stayed at the Clarion which had an indoor pool and hot tub for the kids to swim! YES, you heard right-Maddie got in the pool and hot tub as well and I can't tell you what a joy it was to watch her laugh and play with dad and Tyler (I videoed and took lots of pics with Ansley by my side) We would have never allowed this before but as long as our little princess has wishes we plan to make her every dream come true!
The next morning we headed to Crater of Diamonds State Park in Murfreesboro, AR about an hour from Hot Springs where we took our buckets and shovel and dug for diamonds! Of course we didn't get lucky enough to find one but again, Ansley and I hung out on the side filming and capturing the moment! We had a really great time together. A funny Maddie story-Friday evening we went to eat at Dixie Cafe (somewhere we had not eaten before) and Maddie being a picky eater was trying the fresh rolls and said "mmm, these are the goodest buns ever!" Later at the restaurant, she gave me a big ole hug and said, Mommy I love being here with just our family! She's so sweet and loving!
Tyler is doing well. He completed TCAP testing but results won't be back til June but for now school still presses on! He was able to spend several hours with Austin Taylor last weekend while they were here at St Jude for Remembrance Day. They swam and watched a movie at the Marriott hotel til 1AM! Tyler really needed that time as much as Austin probably did! Thanks guys for the invite!
Today the girls and I got out for a day of shopping at Desoto Co consignment sale. They had some outside vendors as well where the girls got some matching shirts, flip flops for Maddie and hairbows for baby and Maddie finally found that bunk bed for her dolls she'd been wanting!
Maddie has appts Monday AM and then we should know more as far as when her next round of chemo will start. Please keep praying for her full and earthly recovery.
I hope to get back in the groove of updating as it is my wish to not only keep you posted for specific prayer requests but as a journal for keepsake too!
Love to all,
Brandi
Thursday, April 12, 2007 10:27 PM CDT
UPDATE Tuesday April 17th:
Praises, praises!!
Maddie was released from the hospital today with an ANC of 500!! We were all so pleased that her counts recovered so quickly...such a blessing for all of them. When I spoke to Brandi they were heading over the bridge to eat at Cracker Barrel...yum!
Blessings to you,
Mylissa Horrocks for the Beamons
UPDATE: Madelyn's heart rate has come down and is back to normal. She is feeling somewhat better. Her fever comes and goes still, but when it is gone she is feeling pretty good. Thats all I know for now. Please continue for counts to recover and the antibiotics to do thier job. Thank you to all.
Neal Brandi Tyler Madelyn Ansley
Just a quick update on Madelyn. She developed a fever this afternoon and with counts at ZERO we had to go inpatient. We thought this was just another chemo fever that she has gotten many times before, but there seems to be something else going on. Madelyn's heart rate has gone up to 175 and her fever is not going away. This is telling the doctor's that she is trying to go septic.(this is were you have a very low immune system and you catch some type of bug and your body is defensless) This is a BAD thing. She has went septic before and ended up on the vent for 8 days. They told us then that she would not come off the vent but she did thanks to God. They think they have caught it early and have given her two boluses of fluid to give her more volume in her blood stream, if they have to give her a third she will be sent to ICU for closer observation. This will hopefully bring her heart rate down. Also they have pulled out the big guns of antibiotics. She is now on four; Vancomyicin, Myropenim, Tobramyicin, and Cephapine. (Pardon the spelling) Please pray that the antibiotics begin to break down the bacteria and Madelyn will quickly recover without incident and her ANC will come up soon. Thank you all for your thoughts and prayers for Madelyn. They are definitely part of the reason she has done so well during these past few years of treatment.
Love to all
Neal Brandi Tyler Madelyn Ansley
Thursday, April 12, 2007 6:07 PM CDT
Maddie is inpatient at St Jude with fever from last round of chemo. She said this morning while laying on the couch that she didn't feel well. Her ANC is zero and she will be getting more platelets tonight.
She willstart on antibiotics and likely be in until 48 hours after the fever subsides. Please pray for her healing and counts to recover.
Will update soon.
Love to all,
Brandi
Sunday, April 8, 2007 9:18 PM CDT
Hi all
just a short note to let everyone know that Madelyn is out of the hospital. She got out Friday late and after a check up Saturday morning we were able to go Grandmona's house this Easter. We all had a great time hiding and hunting eggs. I hope that all of you had a wonderful Easter as well.
Neal, Brandi, Tyler, Madelyn, Ansley
Monday, April 2, 2007 2:46 PM CDT
Hello to all!
We are here at St Jude and have gotten setteled in our room! This is a first for Baby Ansley to go in with her BIG sister and of course Tyler is with us too! Ansley has been quite intrigued by all the new sights and sounds as she's had trouble getting her naps in today! Finally, she is sleeping soundly at the end of Maddie's bed while Maddie and Tyler have went to the playroom to paint! AAAHHHH!
Dad is on his way home from work and Grandma Sherry is on her way as well to stay the night shifts with Maddie this week!
We had clinic visit today with Dr Furman. Madelyn's bone marrow is NOT clear. UUGGHH! TO be honest I kinda expected this to be true since we had new spots occur in Jan. There is 2 percent on one side and five on the other. What this means is that it could have always been there all along. With Neuroblastoma, the tumor cells form in clumps so when the biopsy is done it really depends on where the needle is inserted as to whether they get a percentage of those cells or not. The good thing is (for me) is knowing that it IS there and treating for it rather than it there all along and not doing anything for it.
So the plan is to treat at this time with the same two chemos, Cyclo and etoposide but the dose was cut by 25 percent to help with side effects and hopefully for platelets, blood and ANC to recover more quickly. We will be in until Friday of this week. We will do two more rounds before doing scans. Clinically, Madelyn looks GREAT! For anyone who has seen her lately has said, "She looks like a million bucks!!' SMILE
She is eating really well and runs and plays effortlessly!
We are so very thankful to our church Sycamore View Church of Christ for providing delicious meals for the past three weeks during my recovery! We are so blessed to have found such a special place to worship!
Continue to keep Maddie in your prayers daily and I'll keep you posted with any changes! She is getting back from the playroom now so it's cleanup time before the baby wakes!
Love to all,
Brandi
Neal, Tyler, Maddie & Ansley
Monday, March 26, 2007 11:24 AM CDT
UPDATE: Neal just called.
1)He spoke with Dr Furman and he has suggested that we (possibly)start chemo next Monday but reducing both chemos possibly in half this time. He wants to give her more time to RECOVER.
2)He says that it is taking her counts MUCH longer to recover from this chemo and has sggested that we see what her Bone marrow aspirates look like and decide next Monday in clinic visit whether to keep on with this chemo or change to an alternate chemo. Her bone marrow for the past year has been clear so PLEASE say special prayers daily for this to be holding true again this time!
3)On a more positive note, Maddie's CT looks the same-unchanged from the previous CT done in Jan. Meaning the small bit of tumor in the abdomen that cannot be surgically removed is still the same. However, her MIBG looks IMPROVED!!! Keep praising God for these "little wins" or lw's as Trish Hampton would once say!
Maddie is now sedated at this time. Please cover her in prayer now.
Love to all,
Brandi
I just love the first picture of the girls above and it has taken me some time (with the new baby and all-hehe) for cropping and getting new pics posted so please bear with me!! We love you guys and can't wait to show you more pics of our beautiful, growing baby and family!
MONDAY, MARCH 26, 11:24AM
Prayer Request:
Maddie will be having her bone marrow aspirates and biopsy done around 11:45 AM this morning. She is at St Jude's with dad as he is off work today and I am here at the apt with Ansley and Tyler as he is gearing up for TCAP testing next week!
Maddie's ANC has fallen to 1100 which is still good but down from 1500 and her hemaglobin has fallen just a bit as well but still in good range. So Neal just called and was just concerned as to why these might be falling and not producing much on their own by now so he waits for Dr Furman to come in.....
We will also get results of the MIBG and CT of last week in just a bit as well!
stay tuned...
Tuesday, March 20, 2007 7:51 PM CDT
Our living doll has arrived…
Ansley Faith is now 2 weeks old! She is just so beautiful and looks almost identical to her BIG sister when she was a newborn! I fell in love with her the moment she was born (possibly because she made the delivery so easy! HEHE) I guess those last few days leading up to her arrival she decided to sit up which made way for a quicker delivery! I guess she was just ready to be here just as much as we were ready for her to be in our arms! The recovery is going well. The first week was really tough for me to move about but thankfully we had help here for the four days after coming home! Members of our church at Sycamore View have been extremely helpful in providing meals. Thank you to Tammi Montgomery for coordinating such generous helping hands and making the recovery period much easier not having to worry about cooking meals for awhile!
We are now completely moved into the new apt downtown and it’s been a blessing being so close to the hospital. Tyler is loving having his own room again! He’s sleeping much better and says he feels safer in the new apt! Let’s just pray for no mishaps here!
I love that we are just across the street as Maddie has had to be at St Jude almost every day since getting out over a week ago. Her counts have not recovered as quickly as Dr Furman says he would like. It has been 12 days now before seeing the first sign of an ANC which yesterday (Monday) was 200. We are still doing the shots every night and those are going so very well! She puts on the numbing cream and says she doesn’t feel a thing! She’s so brave!
So at clinic yesterday, Dr Furman mentioned maybe cutting back on one of the chemos again but first he wanted to see how scans looked this week and next. He along with the rest of us hope that scans look as well as she does! She is active and playful all the time! She is sweet and a bit sassy too! She’s just our little miss priss! She’s been wearing her long purple hair everyday and excited to be able to wear her flip flops again!
I know many have ask how she is doing with the new baby and it’s quite interesting to see the kids reactions to her. Madelyn is all about helping pick out Ansley’s outfit for the day and pj’s at night. That seems to be the extent of helping right now! Tyler on the other hand (the one that really didn’t want another sibling) is always wanting to hold the baby or touching her cheek and talking to her! I can tell when many are gooing and gaaing over the new baby that Maddie gets really quiet and withdraws from conversation. She’s been the center of attention for so very long that she must feel alittle threatened! We have been showing both Tyler and Maddie extra attention lately playing games, walking to the park, eating at their favorite restaurants etc. She will say she still doesn’t like the baby’s name but I have also on the other hand found her saying “bye Ansley!” when she leaves for the hospital!
Well sorry you’ve had to wait so long for an update but I am just trying to get acclimated to having three now! I have a newfound respect for those with three or more kids! WOW! I have pics downloaded and will try and get them up in the next couple of days!
Loving being a mommy of three,
Brandi
Saturday, March 3, 2007 10:32 AM CST
UPDATE March 10th:
Guess what!! Maddie got out of the hospital a few hours ago! We are so happy that the precious Beamon family of five are home together now for the first time. Thank you for your prayers, and please continue to pray that Maddie stays fever free as her ANC comes up. Praise the Lord!
Mylissa (Brandi will update soon I am sure!)
UPDATE march 8th 9pm:
Hi all, Brandi and baby Ansley arrived home from the hospital today! Sounds like everyone is resting peacefully. Even though Neal returned to work today, Brandi has plenty of help right now. Brandi's mom is here, as is Brandi's dear friend Emily from Nashville, so there are plenty of helping hands. The main reason for this update is to tell you that Maddie went inpatient yesterday around 4:30 from fever. Her counts are zero right now, but they started two heavy antibiotics. Please pray that the fever stays away (I think she's actually been fever-free all day today) and that her ANC rebounds quickly so that this sweet family can be reunited at home again. Right now, Grandma Sherry is staying at the Jude with Maddie. Neal and Brandi are both so thankful for your prayers and support during this time. You are a blessing to them!
Mylissa Horrocks for the Beamon Family
PRAISE THE LORD!!!
little miss Ansley Faith was born at 10:26am!! Mom and baby are doing wonderful...Ansley is 7lbs 11oz and 21.5 inches long. I heard Brandi talking in the background, and sound like everyone is doing really well. Continue to pray! We love you!
Mylissa
URGENT PRAYER REQUEST:
Friends, Brandi just called from the hospital, and the doctors have just discovered that Ansley is breech. Brandi will have a C-section within the next hour. Please pray for an easy and successful delivery, and a good recovery for mom! Thank you for your prayers!
I will update again once the baby is born and Brandi is situated.
We love you!
Mylissa Horrocks
Good Saturday Morning!
We will be getting out of here TODAY! Her last day of chemo for this round started at 9:53AM and runs for two hours then she will be getting blood that runs for another three hours! They can't run at the same time due to possible reaction and volumn.
She has been tired for the past couple of days probably because she could have used some blood yesterday! No major issues this week-OH except for last night when she was really hurting from being constipated. I believe the issue is slowly resolving with the Senna in place!
Thank you to the friends who have visited us this week Elisa Klemm, Lillie & Lainee Montgomery, Miss Donna & Emilee, Kaylee Eaton, Miss Jenny, Mark & Mylissa Horrocks, & Miss Annabelle and Bekah!
Tyler has been here with us all week and I can't say enough how BIG of a help he is to me. For the first time in three years here at St Jude I was able to go home for a couple of hours to shower and do laundry while he stay with Maddie so that was really nice just to know he is mature enough to help do for her!
Neal has been working long hours this week. He has been covering in another region driving 1700 miles in four days but luckily he has the next five days off because......
WE ARE HAVING A BABY!!!!
That's right the time is already here! We are going in to start the induction process Sunday evening (TOMORROW)at 8PM and our new addition will make her arrival sometime Monday March 5th!
Neal and Tyler are home now preparing for the new addition! They are cleaning, changing bed linens for the arrival of family that is coming today and tomorrow, unpacking the last of the boxes, cleaning out the vehicle and installing the carseat again! I hope they are getting my comfy recliner and side table ready hint hint since that's most likely where I'll be parked for the next week or so!
I have been here trying to catch up on thank you cards but it seems the time just slips by so quickly. I have received many nice gifts from my shower that's been fun looking at butI'm ready to use now and my mother and Aunt Donna recently had me a gift card shower so Neal and I are hoping to get out today for last minute items! We feel very blessed and are very grateful for the love that you guys have extended to us! We love each of you dearly. We are feeling less overwhelmed this week (if you can believe that)just knowing that we are in a much bigger apt and better environment for Maddie! Tyler's fears have even been eased in the new apt as he has been sleeping in his own room and bed without coming to get someone! We all just needed a change! Now not to say that won't change this week as the new baby is sure to cause some overwhelming feelings so please pray for our sanity!
We will update on Sunday evening or Monday as soon as we can! Neal's cell number is 901-238-4797 if you can't wait! HEHE
Love to all,
Soon-to-be family of FIVE!!!!
Saturday, March 3, 2007 10:22 AM CST
Good Morning!
OK I just lost my entire journal.UUUGGHHH.
Will update in a little bit.
Tuesday, February 27, 2007 10:05 PM CST
We are now inpatient here at St Jude starting Madelyn's second round of chemo since relapse. We are still doing the cyclophosphamide & Etoposide. Dr Furman did reduce the amount of Etoposide by 25 percent this time. Apparently, it's the one that gave her trouble making platelets last round.
I know Neal's last journal indicated we may have this week off but that was only if her counts did not recover. Maddie had the hole in her line last week we were unable to use the line. She did receive an IV for three days for lab draws and platelets.
However, we decided since her ANC was only recovering by 100 everyday that we go back to giving the GCSF (Immune system or ANC booster) by shot again. The numbing cream was suggested to use and for three nights straight she did not even cry (though we repeatedly tell her it's OK TO CRY!) when giving the shot and only fretted briefly when the burning penetrated beyond the numbed area!! Praise God for calming our fears in that area! Her ANC went from 800 on Thursday to 6800 on Monday after starting the shots!
OH also I have failed to mention that we are in the process of moving to a downtown apt that's bigger for our growing family and much more convenient to the hospital! Are we busy or what? We were offered this by Habitat for Hope and we are so very grateful! What a blessing!
Maddie has been feeling very well since Saturday just one day after her surgery. Her cousins from Nashville and grandparents have been here over the weekend and very helpful in helping us pack and move! Maddie and I took two of the younger boys with us Sunday to Family Factory at our church and they had a really great time! It's the first time Maddie's gotten to go in 3 weeks and since losing her hair again.
She's been so giggly today! We've been to the playroom, played ball and made worms with playdoh, colored and made glittery butterfly wings!
As for me and baby to be, we are groooowing! I gained 4 and a half pounds last week alone! A total of 30 now! I am due in just 10 days (I can't believe how fast it's going)and so far it's been the easiest pregnancy! My lower back hurts more this month and I've gotten used to the waking up ever two hours due to bladder issues! I guess that's just preparing me for the every two hour feedings I'll soon be doing again! OH MY!
The dr seems to think the baby is about 8 pounds! Tyler was 9.4 and Maddie was 8.7! We have decided on a name however Maddie is not liking it one liitle bit she gets really upset when we talk about the name and insist that it is Madison Claire (Maddie2 for short)! HEHE
Yesterday, we were in Assessment Triage and the nurse ask, Maddie are you having a brother or a sister and she replied, "A BROTHER, cause mom don't have a good girls name!"
The name we have chosen for our baby girl will most likely stay ANSLEY FAITH!!! I chose the first name and Neal the middle whereas it was opposite with Madelyn's name-he chose the first, I chose the middle!
I will update as the week moves forward!
Love to all,
Brandi
Neal, Tyler, Madelyn & baby ?
Thursday, February 22, 2007 8:46 PM CST
UPDATE:
Just letting everyone know that Madelyn is out of surgery and every thing went fine. She is in recovery right now.
Just wanted to update real quick this afternoon. Me and Brandi met with Dr. Furman today and he gave us the results of the MRI. He said that all the spots had NOTICEABLE IMPROVEMENT!!!! Thank you LORD for this great news! Please continue to pray that the chemo has had the same results on the other tumor in her body. We will do complete scans after her next round of chemo. This round will probably begin late next week or first of the next week. Please also pray as Madelyn goes into surgery tommorrow to replace her damaged central line in her chest. I know that I hardly ever do the journal entry, but know that I am very greatful for everyone's thoughts and prayers for our sweet Madelyn and just want to say THANKS.
NEAL
Tuesday, February 20, 2007 8:43 PM CST
Well it's always something going on with Maddie especially when her counts are down!
Let's see...since my last update....
Yesterday or Monday we had clinic visit and Maddie's line would not easily pull blood so they untaped the line, raised her arms and so forth. Well I ask for a dressing change since it was the day for it anyway and the entire gauze was soaked in fluid and blood. The line nurse was quick to respond and suggested a possible hole in the line. That afternoon some dye was run through Maddie's line while she and dad were in the X-ray room and low and behold there is a small hole in the line inside near the clavical bone.
I had been noticing a small drop of blood on the gauze for the past three weeks and even had them look at this while inpatient but just told to watch it since it may have just been tugged, moved, pulled, rubbed etc. (though we're so careful and keep it taped at all times I was just sure this wasn't the case) However, now we wonder what amount of chemo, antibiotic, blood, platelets, saline, heprin actually got into her chest cavity and not into the blood stream? And what effect will this have on scan results? We have not seen Dr Furman just yet since having the X-ray but he is aware of the situation and I'm assurred he would notify us if he was overly concerned.
Well we cannot use the line now. Maddie needed her GCSF (Immune system booster) which she was normally getting in the Med room nightly but now we had to give her a choice to make...Either get an IV in her arm and get the GCSF in the IV and keep it in overnight for the MRI that was done today or get the shot at home and not get the IV until Tuesday after they put her to sleep. She thought for a bit while we put a Carebear puzzle together then opted for the second choice.
Today like I mentioned we had an MRI of the brain and orbits which we do not have results of yet. Her ANC is 500 and her platelets are low at 19 (we normally transfuse at 20) However, since platelets are thick and sticky and do not last very long (about 3 days) they did not want to risk blowing a vein with the IV and then having to reinsert the IV. So they are hoping that the platelets may recover on their own as her ANC recovers. This is a prayer request! They also want to give these as close as possible to the surgery date if needed. Tonight we are in the Med room and are able to get the GCSF in the IV in her arm.
Also, her left eye had started itching and bothering her before coming over tonight and now both the whites in the eyes are red. The Dr is coming in to check on this in a bit so Neal will have to let me know what we will do on this issue since he is with her now. So I'm not sure at this point.
The PLAN: We have a CBC scheduled for Wed AM. We have an ultrasound and consult on Thursday with the surgery team and her surgery for a new line placement will be on Friday. We start chemo on Monday. Please pray for this week to go smoothly. For the grace of God to be with us as we comfort her and tend to her every need. For us to have strength. For Maddie to continue eating (she has not wanted to eat all day). Pray for her platelets and ANC to recover quickly and the chemo to have a positive effect on destroying the tumors. We know she is a strong little girl and even says many times how brave she is herself!
She is doing well alittle grumpy at times but super sweet. She walked by me tonight at the house lifted my shirt and kissed my belly! So sweet! She is so excited to be a BIG sister! Her BIG sister shirt is already packed for the big event! Just 3 more weeks!
She found a kids Suduku book in clinic today. She picked it up right away (Imagine that!) and has been working in it all evening!
Well I have to go for now as I am having to use the upstairs computers at St Jude for the time being.
Love to all, Brandi
Saturday, February 17, 2007 11:02 PM CST
We are out of the hospital as of yesterday-Friday afternoon. Maddie has been very active and has picked up her eating! Praises! She's eating pancakes w/syrup mostly! We've also started her on Ambertose powder (a nutritional supplement) Search Glyconutrients by Mannatech, that is added to her drinks and sprinkled on her foods as a hopes to keep her energy and immune system in better fighting condition. We do 1/2 tsp, 3-4 times a day. Only time will tell how or if it will help but we do believe that nutritional value has a big role in overall health and well being so we're gonna give it a shot and hope that it helps in some positive way!
Anyway, we have also decided not to give the GCSF by shot after chemos and just return to the Med room every evening for a 30 minute drip in her line. I just can't stand the thought of hearing her wail about shots when now she has relapsed and knowing how much she will be going through again as it is. It's worth the trip to Neal & I and I know it is to her as well! She's so happy not to get those burning shots every night in her little arms and legs.
We are in the Med room tonight getting her GCSF, blood and platelets. Her ANC is just at 100 but no fevers! We've had to move to a room upstairs to get the blood tonight since the Med room closes at 11:30PM and we'll be here another 2 hours.
She has been so full of energy today and just a joy! Grandmonna and Pa came today and are staying the night. Maddie is completely bald again. We made a hair box to put it in last night in the Med room! It was soo pretty with sequins and stickers and glitter all over! She's very proud of it! Her hair was just coming out all over everything and getting in her mouth even, so what little was left had to be shaved. And so now dads hair is gone again too! I must say it's a shock to see it for the first time again bald. My heart just feels nothing but sadness for her as she has just been loving her hair for the past 9 months or so. We have bought so MANY hairbows, ponytail holders, headbands, clips, barrettes, even pink and purple hair extentions...you name it she has made up for lost time in the hair dept! She's such a beautiful bald headed little girl! We're all just so in love with her that we can hardly stand it!
I must go for now and get back to the room.
Love to all,
Brandi
Sunday, February 11, 2007 8:05 AM CST
UPDATE: Feb 14 HAPPY HEART DAY!!!
We are still inpatient. She has not had fever since Monday but her ANC still remains at ZERO! She received blood on Monday and more platelets this morning.
She also has tested postive in one culture for MRSA (a type of bacteria that we are all colonized with but given her counts are zero it has erupted.) So now she is in Strict Isolation meaning anyone who comes in the room must gown up with gloves and mask as well!
Dr Furman came by today and we should start to see counts recover this weekend so that we can go home. We would still be in isolation when we come to the hospital until we get three negative cultures.
She has been very active! Playing games and making lots of V-day cards and crafts! This is absolutly her FAVORITE HOLIDAY!!! She made me a Dora poster with glitter and stickers and the whole family a nice card with all our names! She was so excited to give it to me first thing this morning before her eyes were really even open! We are waiting on daddy to return from work to get more surprises! She has been quite the little charmer up here with all the nurses! It is obvious she is loved so much! The have come in and made necklaces with her, painted wooden hearts, brought cards and Miss Jenny and her dressed up in pink gloves and costume jewelry for a photo shoot in the room last night around 11:30PM! She's such a sassy fashion model when it comes to photo shoots!
As for me, I had a Dr appt this morning. I'm 36 weeks and dialated 1 cm! WOW! It's starting to become real now that I don't have much longer! HEHE I can't grasp how in the world these moms handle a newborn with their childs illness and many hospital stays but I'm confident all will be just fine!! Just please pray for a safe and easy delivery which I am most nervous about! Along with that prayer please pray for Maddie's counts to recover quickly and for continued happy days!
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Sunday, Feb 11 8:05AM
We are inpatient...
At 3AM Maddie developed a fever so we got packed and ready and headed over to St Jude. They did all labs, cultures and even had to stick her to get labs as well which always results in tears but she had her soft teddy, Emily had gotten her for Christmas so she held on tight to it and my hand and stopped crying actually once the stick was made and then watched it fill up the tube! Then said, Was I brave, mommy? Bless her heart.
She also has an ANC of ZERO (unable to fight infections) so now she has her very own room for the week! She has been in great spirits and is resting well now! They have started the Cephapine antibiotic and she also needs platelets today.
Will update as we know more but this is to be expected and unfortunately just part of the journey so hopefully now we'll just wait for counts (ANC) to come up which will take about a week and then we'll be out of here!
Love to all,
Brandi
Saturday, February 10, 2007 9:43 AM CST
All is well...day 5 after ending chemo
Not much to report this cold Saturday morning. Maddie is still sleeping after a very long evening at the Hope House last night playing with the kids and Polly Pockets with Bella! She always has so much fun there!
Last night was the Habitat for Hope Volunteer meeting. I must say I do better going to the Family meetings instead as this one is an in depth on the Habitat kids which is quite emotional for me having just had our girl relapse but none the less it will touch your heart if you have not yet opened your heart to see what this ministry has done for not only our family but MANY more like ours! It is amazing to me how the Lord has given Mark & Mylissa and volunteers alike this incredible Grace to carry on their vision as they are an incredible source of strength and HOPE to so many families. I can't tell you how spiritually blessed your life would truly be knowing this sweet family and seeing what makes these volunteers for Habitat for Hope so special to us!
As of Thursdays visit with Dr Furman her counts had not dropped. Her ANC was 2100 (remember 500 is the magic number when we have to wear a mask and NO going around the outside world) Her Hemoglobin was 10.3 (St Jude transfuses at 8). He suspects these to start dropping by Monday so that is our next clinic visit.
***************************************
Baby Shower...
Grandma Sherry was down for a day this week and she and I went to my shower on Thursday night given to me by Rachel Newsom, a friend from church as well as our nurse who took care of us on the ICU floor one year ago! Her husband, Eric is from Huntingdon where Neal is originally from as well! Many of you from our home town may know him! The food was wonderful and there was so much laughter and great conversation! For those that were there, I just can't stop laughing at how funny it was to see someone show their SPANKS in the middle of a baby shower!! It was soo funny! Our baby-to-be as well as Tyler and Big Sister Maddie even received very nice gifts!
Well I need to get our girl up as Granmonna and Pa are on their way to spend the day!
Love to all,
Brandi, Neal, Tyler and baby Girl ?
(Due just one month from today!)
Tuesday, February 6, 2007 10:12 PM CST
Thank you to all the sweet nurses who took care of us this past week-you know who you are! Thank you to Mark & Mylissa/Habitat for Hope for allowing Neals parents to stay a couple of nights in the downtown apt (the one that the Nason's stayed during their stay) It provided them with the convience of being close by and stay longer with us! Thank you to Dawn from Olive Branch, MS(thanks for the special colored picture!), Bruce and Elisa Klemm( the girls played a fun game of Sorry and Connect Four together!), Kelly, Tammy, Casey, Taylor, Lillie and Lanie Montgomery (Tyler and Maddie worked on the Care Bear puzzle together and it was nice to eat lunch with the girls!), Miss Donna, Emilee and Nick (the Valentine stuff provided so much fun!), Melissa and Evan Thomason(that was fun writing on all the inpatient windows with window markers!), & Granmonna and Pa for your visit and to all that called, signed the guestbook or prayed for us-THANK YOU SO MUCH!!! To my friend Emily, thanks for the dinner to On the Border and visit before going to Libby Lu at the Target House this past week! Maddie's favorite thing to eat right now is On The Border white cheese and chips!
**************************************
We are home! We were released this morning and the rest of the day has consisted of unpacking, washing clothes, and playing games and Barbies with Maddie!
She is feeling really well! She has been eating chips and Velveeta cheese today and not much else but she is happy and having fun! Praise God for that!
We had a good stay this past 5 days and I slept pretty well in the recliner beside Maddie's bed! She is back to wearing a pullup during the night while inpatient because of all the fluids but the fluids will come off first thing in the morning!
We are back to giving the GCSF shots every night before bed. I had ask nurse Kathy for a quick overview of the whole process again since it has been almost a year and a half since giving them. I just fell apart tonight while talking to my sister over the phone. I just hate having to give these shots as they burn really bad....she reminded me of how it is to save her life not to hurt her of course. Her daughter, my neice, Emma who is 6 has Juvinile diabetes and is really having a hard time right now with her blood sugar and has been taking up to 9 shots a day. It's so sad. It just hurts knowing our kids are going through so much.
The GCSF shot is to help Maddie's counts recover more quickly. As her ANC (immune system) will soon be falling and unable to fight infections, the shot is to boost this ANC quicker so that hopefully no infections set in.
Well I am really tired so I'll be cutting this short tonight but I do want to thank everyone who has called or visited us this past week! We love you guys!
Love Brandi,
Neal, Tyler, Maddie and baby girl ?
Friday, February 2, 2007 6:26 PM CST
Good day...
Today was the first full day back on chemo by the way she is doing cyclo and etoposide or VP-16. She's on fluids all day which means a trip to the bathroom with poll and lines in hand every hour!
There are some new rules here at St Jude since we were here a year ago, with chemo precautions. The nurses have to wear a white gown, gloves, mask and eye protection every time they access, deaccess, or get urine etc. They have to lay a pad accross Maddie's lap in case of leaking when accessing her line. Of course I have to wear gloves when it comes to taking her into the restroom. She also has to waer a bright orange bracelet during chemo and a bright yellow chemo precaution sign is placed on the door. WOW! Apparently this is accross the entire state of TN as part of OSHA requirements not just at St Jude.
I had a Dr appt this morning and all looks well! I told the Dr about the baby balling up and very painful stretching going on and thought I may need checked thoughly but I soon realized that it was perfectly normal since I'd gained 3 and a half pounds in just one week! Oh my! Just 5 more weeks to go- due March 10th! I stopped by a children's shoppe on my way back and got the girls their first matching outfits (pink pajamas with tiny rosebuds all over- so girly!) I relly went in to get Maddie something with hearts or a heart day craft! Her favorite holiday is Heart Day as she calls it!!
Maddie is feeling really good. She's been laughing, squealing and silly as can be! She has been a princess with her crown on the entire day! We had a makeover when I returned and I even got a crown to wear as well! She brought 5 of them from the house!HEHE We've played Sorry, done crafts, been to the play room a couple of times.
Love to all,
Brandi
PS Not sure that I've mentioned this. We are preserving the baby's cord blood and found it to be a blessing when they explained to us that when you have an immediate family member undergoing treatment with the possible need a transplant, it is FREE! Can you belive that? I was shocked as we were expecting to make monthly payments for the $2000 expense. We only had to pay for shipping cost of $65.00! The two that I've found that do this is Cord Blood Registry and Viacord but they may all do this!
With that said we are not sure that Maddie will need a transplant but with the possibility there, our hope is that the new baby will be a perfect sibling match should that be what God has planned. More than that we pray for NED for Maddie and it not come to that!
Thursday, February 1, 2007 5:38 PM CST
back in the old saddle....
Well, as you may be aware things can change in an instant when it comes to our St Jude kids. Today was suppossed to be our first day to sit, relax, play and just be at home since Monday of last week. Well, we got the call from St Jude this morning that Maddie needed to be seen by Dr McGregor since Dr Furman was not in.
Anyway, Maddie's MRI was looked at closely by Dr McGregor and Dr Krasin, the radiation doctor and the posterior tumor that is in the bone is protruding inward close to a main vein in the brain which could potentially cause a stroke. So, the plan of treatment will remain the same but they wanted her started TODAY instead of on Monday like originally stated.
So here we are inpatient again for the first time in 10 months. Morgan is our nurse this evening and of course excited to see Maddie!
She is hooked to fluids and chemo should get started around 7:30ish. This chemo is about half the concentration (500 instead of 1000)of the regular dose given before so they are not concerned with giving Mesna, a drug used for bleeding of the bladder.
Madelyn has had no complaints of pain and just being her silly self all day! You should see her with her capri's and fuzzy pink boots and all her jewelry! She brought her monkey Nelly and new monkey that came from a sweet lady all the way from Texas who stayed at the Hope House this weekend!
Grandmonna and Pa are here and they are with Maddie in the play room so that I was able to get the room situated! A blessing indeed! Tyler is here as well and has been a BIG help helping me with the wagon and bringing up the luggage-it seems the baby wants to start balling up when I push or pull anything lately! Neal will be here soon.
Things are calm and well at the present so please just pray for this chemo to be effective on shrinking the tumors, pray that she tolerate the chemo with NO side effects, pray for our stress level to be calm during this time and that the day to day management of our family will be smooth.
I will update as I know more!
Love,
Brandi
Neal, Tyler, Maddie & baby girl ?
Tuesday, January 30, 2007 9:10 AM CST
MADELYN HAS RELAPSED Confirmed Jan 25, 2007-PLEASE CONTINUE TO PRAY
We met with Dr. Furman and the team yesterday. Madelyn needs more chemotherapy and treatment to hopefully get her stable again. (NB dosen't get a remission status but this word is used often as reference to being stable and off treatment) It has more less felt like remission if you will for the past 9 months that Maddie has been stable and had WONDERFUL quaility of life! We are very blessed and give Thanksgiving for what God has allowed us to experience with her this past year! She is just the happiest and most loving little girl you could ask for. HSe truly loves Jesus and other people. She loves to give and receive hugs to her friends, animals even stuffed ones, dolls you name it she absolutely brightens your day with her fun loving ways and funny personality! Something we had not seen while she was on treatment!
The plan is to treat Madelyn's cancer with Cyclophosphmide and another chemo drug called VP-16. Her body has seen these two drugs before when we stated on Feb 2, 2004 when she was just two years old. He feels though that they are good (maybe the best choice) for shrinking tumors at this time. We will start on Monday morning Feb 5th. We will go inpatient for 5 days and then wait for counts to drop and then recover. The process or round was about 3 weeks for Maddie last time. We will endure 6 rounds (about 4 months). We will do scans after every 2 rounds (about every 6 weeks).
We have been with family since receiving the news on Thursday and it was very nice to have our minds occupied. It seems that alone time any amount at all whether just in the shower or in a restroom stall at a restaurant can get the best of our emotions. This is not easy but I do have to remind myself that another little life inside me needs my attention as well and Tyler too. I never really knew what denial was like until that Thursday. It just dosen't seem real by looking at that energetic little girl! Then about Sunday morning before church I was more less angry with God as I talked with Neal while Madelyn lay in bed asleep. However, we went on to church and the experience of peace in my heart was amazing as Bro Joe at Malboro church of Christ spoke of 'Pressing On' in our faith. Referring to the Lepers in Luke as an example of those not keeping their faith and those that did....It really does lighten the load to know that we have someone to cast our burdens on and knowing that their are so many praying for us is a powerful feeling!
We want to thank everyone who has called over the weekend or praying for us right now! We love you guys!
We were able to eat a nice dinner at the Horrocks' Hope house last night. Thank you Mark and Mylissa for the wonderful meal and time spent together. Maddie wanted Mrs Mylissa to be with her during scans today since I can't go back so she is meeting us at the hospital soon! Daddy may even be off work to come too!
We are hoping to see my great friend, Emily who is coming into town from Nashville and maybe we can take Maddie to the Target House tonight where they are having Libby Lou there! It's a girly girl store for girls only where they do hair and make-up and glitz and glitter galore!! We've been to the one at Parisians several times and she just loves that place!
As for me quickly, I went to see Dr Hamby on Friday and all is going well. He does want to start seeing me weekly due to circumstances but so far so good! I can tell she has gotten much bigger just this week and movements are stronger!
OK well I really need to cut this one short as we are preparing to get to St Jude. Maddie has an MRI today. It's just for a baseline test before starting treatment.
Please continue to pray for Maddie and the many kids at St Jude as they endure life threatning illnesses.
Love Brandi
Neal, Tyler, maddie, and baby girl ?
Thursday, January 25, 2007 11:35 PM CST
facing our fears....
MADELYN HAS RELAPSED...PLEASE KEEP PRAYING FOR HER
I sat alone with Maddie waiting on Dr Furman with anticipation of a quick visit. At some point it became apparent to me why Mrs Monica was called to Sandy's office and then her coming to get Maddie that someone wanted to see and meet her...Dr Furman and Sandy walked in and let me know, Maddie is being occupied outside the room they told me....
Then went on to say, "Madelyn's cancer has come back", he said.
My first reaction was NO, not Madelyn, there must be a mix up...she looks so great and feels great and has no symptoms of a sick child...UUUGGGHHH I could just scream.
She's so beautiful today in her little pigtails, she woke up wanting Tyler to pick out her outfit today, of course he chose a orange sweatshirt with a football, with pom poms and bows with a pair of jeans, the cowgirls boots were her idea though! My mind was racing with images of all her beauty and wonder and how loving she is and in love I was with her and then the tears flowed as it took my breath away....
The news was told to Maddie as she was brought back into the room, she took it fine that she would not be getting her line removed since she needed more medicine, as Dr. Furman gently put it. After a long pause she continued to play with coloring books in the wagon. Then Sandy took her to the gift shop while I was able to call Neal. I am thankful tonight for him being able to come right away and off tomorrow and Monday as well.
This is not the news we had all prepared for and I'm really not sure that I can even put into words how I feel right now as I watch her play and sing and dance with her cousins tonight. We have family staying with us tonight and with the kids in tow its been easy not to dwell on facts and reality at this point. I know at some point over the weekend Neal and I have some very tough decisions to make....
We meet with Dr. Furman again on Monday with several options presented. Believe me I'm thankful for 'options' but I know this beast is relentless and unforgiving....NB has an 80 percent chance of relapse...It's just an awful disease. UUGGHH!
As for her tests, Maddie's BM aspirates were clear but as we know these NB cells form in clumps or clusters so they know they just did not hit the right spot. So now how much is in there really? We don't know but he does know there is some there since MIBG showed 4 new spots on the bones of her leg and three spots in her skull.
Her CT of the lungs was not good either, one lung is cloudy and full of "something" but not tumor. They have had ID look at the CT and even took cultures to see if it may be fungus or a viral or bacterial infection so that we can get this treated first. For now they have put her on an antibiotic until all cultures come back.
We will take one day at a time at this point and cling to God's word. Please be with us in prayer. We are going to need each and every one of you to get through this. I want to thank you in advance for the past love and committment you have extended to our family as we feel blessed that we are not alone on this journey! I will update soon as for now I just want to watch our girl sleep tonight!
Love to all,
Brandi
Neal, Tyler, Maddie and baby girl ?
Monday, January 22, 2007 5:56 PM CST
Can you believe this...
I have some wonderful news that I've been meaning to share and can't believe I have held out on anyone...Madelyn has not used a pull up since Dec 17th and NO PACI since Dec 19th! We just told her it 'was time' and stuck to it, since all the options of ways to take the paci away failed. She did whine, get mad and shed some tears for about ten minutes for three nights in a row. (that's it though) She would go to the paci drawer every morning and check to see if they were still in there, look at me and then shut the drawer! YEAH MADDIE!!! YEAH for MOM!!!HEHE I'm so proud of her, she hasn't even ask for them since and when she finds one she actually rushes to get it to me as if she's so proud of herself too!!
SCAN WEEK...
Just checking in to remind our faithful prayer warriors that this is Maddie's SCAN WEEK! It is an anxious/nervous time for us and our family.
Today she had bone marrow aspirate and biopsy, she is not having any pain and playing indoor basketball with Tyler as we speak!
She had labs and D clinic as well! Her weight has stayed stable since Oct at 16.3 kg (mult by 2.2 to get lbs) and height has increased!
Dr Furman has informed us that he will schedule an appt with the line nurse for Thursday. Should scans be stable Maddie can have her line removed!!!! OH! How wonderful that day would be, now can you see why it's an anxious/nervous time for us all!
Grandma Sherry is coming in the morning and going with us for Maddie's CT and MIBG injection and then staying for a couple of days. Since I'm expecting it is advised NOT to even be in the room for her CT and NOT to handle her for several days close to my belly, help with potty, etc. due to her being radioactive!
Maddie's MIBG scan is Wednesday. We pray for nothing to light up!
Love to all,
Brandi, Neal, Tyler, Maddie and baby girl ?
PS as for my 4-D ultrasound, the tech would not do the scan because my Dr had no reason listed on my chart as to why I was having it done...I thought the Dr's order was word but apparently not at MId So OBGYN....so there is nothing nice to report there! I was disappointed to say the least and for the third time during ultrasound only, I've felt disappointed but I'm just praying more for a safe and happy delivery and little girl!
No name just yet but I have been informed that some ladies at church are having a shower for baby girl on Feb 8th which totally surprised me and very thankful for!
PLEASE PRAY FOR MADDIE'S SCANS, DOCTORS AND FAMILY!
We are very blessed to have you here with us! Thank you for checking on us often! Love Brandi
Wednesday, January 17, 2007 12:31 AM CST
Country Cares.....
MADDIE WITH HER BUDDY RANDY OWEN AS SEEN ON THE ST JUDE WEBSITE!
Yee Haw! We had such a great time at the Country Cares event on Friday evening at the Peabody Hotel! It is such a beautiful and luxurious hotel to say the least! It's so much fun when Maddie gets invited to special ALSAC events...of course she's the Star and we are just her entourage or PEEPS huh!! HEHE
But first of all I’ll tell you about the beginning of the day. Dad had to work so Tyler and Maddie and I spent a couple of hour at St Jude Friday the 12th where Maddie and I hung out in the Medicine room play area, she played while I spoke to about 8-10 groups in a two hour period. The groups were radio stations from around the nation taking a tour of the hospital and then listening to a patient story along the way! We are so happy to share our little girls story and share the HOPE of St Jude! I just fret over how to put three years into three minutes! WOW! She's just been through so much and every memory or detail is so heartwrenching with many ups and downs but I think most importantly he message given was the relentless care and research that goes into saving the lives of children. Whether it be more time or raising the prognosis rate...the research never ceases with our donors/supporters!
ALSAC had made 3X5 trading cards with Maddie’s pic on the front and her story on the back that was handed out to everyone on the tours that was pretty cool! And they had a huge banner outside up over the Danny Thomas Pavilion that had Maddie’s life-size picture on it as well!! Isn’t that cool! Believe me I only think that’s cool in the cancer world, hoping that our girl will make a difference to a donor’s heart and want to give to St Jude and help kids faced with life threatening illnesses!
Maddie was a big hit to say the least, she entertained the tourists with a show of her line (not very modest huh!) and then a spin in her brown and pink cowgirl boots! She would give a little subtle shy like wave to some and then with some tours she would hold her HOPE poster up with pictures of herself during treatment!
I will say I was much relieved to have that part of the day finished as it’s not really stressful just really tiring…and I guess being 7 months pregnant had much to do with that as well! I really just wanted to go home and take a nap but it was three o’clock and we had to get ready and leave around 4 to be downtown for the Rising stars of Country music!
We arrived at the Peabody with Maddie having had a nap on the way! She woke up as soon as the truck stopped and came alive! She has been so excited to see Kelley Pickler, already knowing she might be there!! There were about 4 other St Jude patients as well. They did a group photo with all the Artists and then Maddie really had a great time talking and laughing with Randy Owen and Sarah Buxton from Nashville. Sarah actually came to us amazed at Maddie’s vibrant personality! She’s a hoot, I must say! She told Mr. Randy she had make-up in the truck and that she should have brought it in…(not quite sure the whole conversation since Randy was laughing so hard while telling us but I can just imagine she would have used it on him if she had it!) Remember back in June of 06 she had a photo shoot with him and as he was drawing a smokestack on a house he ask, What comes out of the chimney? Obviously he was thinking smoke when Maddie shouted, SANTA CLAUS…and he starts laughing!
We also got to meet Andy Griggs, Jake Owen, Chris Young, Clay Walker, Mark Wills, Pat Green and songwriter/ artist Luke Bryan (sp?) from GA who wrote Billy Currington’s latest song and who also has a Single coming out soon! I was amazed at his honest sincerity with the kids! And Buffy Lawson from KY, but lives in Nashville who has a song, The Bomshell Stomp coming out soon that she just insist Maddie will love! She and Maddie had much talk together over their cowgirl boots and city hats and Maddie even got to wear Buffy‘s fancy little purse!
You'll be hearing all these artist (if you're a counrty fan that is!) in the next 4 months or less!
Maddie was able to get a great picture with Kelley before her manager rushed her away. At the reception, the kids sat on stage while the older StJude kids handed the Artist their award which was a nice black framed St Jude artwork with the artists name and a saying!
The night went well to say the least. The kids were pretty tired by the time we got back in the truck and just wanted to eat! With downtown extremely packed and parking not less than $10.00 we opted for a nice dinner at On the Border! YUM!
I haven't had my pics developed yet but the one's above were sent by a special supporter! Thanks Dawn Silcott for the pics!
Maddie has been feeling much better from the RSV for the past couple of weeks with some on/off coughing but much better when she sleeps under the cool mist humidifier!
We've been doing schoolwork and home searching with the anticipation that Maddie will be 'off treatment' after scans this next week! We have been in a furnished apt for the past year and a half of Maddie's treatment and so if we get the all clear we'll most likely be ask to move out and of course only right for someone else on the waiting list who is undergoing treatment! Well...with our growing family, we're gonna need more room too!
Please pray for clean and stable scans for Maddie coming up on the 22nd, 23rd and 24th of next week. Pray for our nurse anethestist and doctors who care and read results for Maddie. She will be put to sleep a couple of times (like always though) and we should get results by Friday the 26th!
As for me I am at 33 weeks along and will be having another 4D ultrasound on Thursday the 18th around 4pm. Hoping the photos are clearer than before and even see her entire face this time!!
Please be praying for our friend Bella www.caringbridge.org/fl/bella who will be having scans on Monday the 22nd as well!
Love, Brandi
Neal, Tyler, Maddie and baby girl ?
Thursday, January 4, 2007 8:18 PM CST
Hello to all!
First of all, just want to mention that Brent Nason earned his Angel wings a couple of days ago. He was the 11 year old who was diagnosed with NB 6 months after Maddie in 2004. We were able to attend Brent Day back in Sept with his family and friends and he was such a loved and loving kid! Tonya was such an inspiration of God's unfailing love to us all and we are so blessed by her friendship!
holiday blessings & tail feather shaken...
Gosh, it's been awhile since we've gotten together! It seems we've been on the go since Thanksgiving! We had such a great Christmas! Counting the blessing of having Madelyn with us and loving that Tyler was with us for Christmas morning especially since Santa was being extra jolly this year!!!
Let's see for Maddie Santa left some pink cowgirl boots I figure since she outgrew the last pair! she got some blue eyelashes and makeup in her stocking along with the chocolate candy she had requested when she sat on Santa's lap at the local WalMart! Many other gifts from Santa as well!
She received from grandparents, a pink Gameboy SP with games and Dora backpack case, my fav, a cheerleader doll with a big M on the front that plays the cutest cheers and chants-I actually remembered some of them from HS as I chanted along! HEHE OH that was for her birthday!
a new baby doll, Big Sis Dora doll, a boy Barbie, Dora 10 in one wooden game table, a new sparkly butterfly case with makeup!, a dressy outfit from Macy's along with some black sparkly slipper dress shoes-so trendy!, a Holly Hobbie doll, Holly Hobbie bath stuff, a new Big Barbie head, she received a nice trunk full of dress up clothes from her aunt Amy and Uncle Matt! By the way, Amy did our Christmas pics this year that's on the front page!
Maddie also recieved a dance pad, movies, many clothes and the cutest poodle scarf you ever did see and gloves with little girls with braids on the fingers!, a real baking set with apron, crafts and activity books, jewelry and monogrammed hairbows, polly pockets, also she received a cute little white plush bunny who she named "Twitch" that you program into your computer and it 'comes to life'! We haven't yet done this but will soon be trying it out! She also received from my friend Emily a box of two create a bears, they are the neatest bears complete with fluff, outfits, and a sound and the back zips, no sewing involved, lucky for Em!
Of course she had a great birthday as well! After we had Christmas dinner with my mom and and brother's family we celebrated Maddie's Birthday-agian with a Gingerbread House mom made-it was just adorable! She loved eating the gum drops off the roof! I received one as a gift and took it to my sisters for new years and the four girls had a blast decorating the house!
I'm sure I've left out things but needless to say Maddie and Tyler too really had a great Christmas! I guess Tyler's big gift this year was a Nintindo Wii from Grandma Sherry and of course he got lots of Star Wars, movies, games and much NEEDED stuff!! HEHE
We were so blessed to receive a nice gift card from our Open Arms apt and Habitat for Hope to make Christmas extra special-thank you! Also the kids got some nice gifts in the mail from chemo angels and caringbridge supporters that was very much appreciated and thoughtful!! They both LOVE to receive mail with their name!!
We have all been sick over Christmas too. We all had a one-two day stomach virus Tyler, Neal, then me and thank goodness Maddie never got it but she did have the RSV with all the coughing for a month which was enough in itself! She got over it after Christmas and for the past two days has been doing some more sneezing and coughing and says in the mornings, it feels like there's a bug in her throat! Ouch! SHe has been playing and eating though and the coughing has slowed much!
After my couple of days rest from the 6 hour drive and 4 days at my sisters in Ramsey, Ill, we have started taking down and packing the Christmas today and hopefully will get that done by the weekend! We had a fun time there as the girls played Polly and dress up. The men and Tyler watched 6 kds while my two sisters and I had a night out eating Mexican and shopping! Kudos to them! We played games all weekend and watched the ball drop on Time Square! The girls had fun wearing party hats, and ringing in the new year with all the confetti and blowers!
As for me, I am feeling pretty good with occassional pains from kicking and too much time with bathroom breaks! I'm about 30 weeks along now-WOW! I go back to the dr mid Jan and then start the every two week deal! This is really flying by! Still no name for our soon to be daughter no. 2-I'm now taking suggestions since my wonderful hubby just says, I'll think about that one when I say a name and when he says one it's usually a definite NO! HEHE Just kidding but we haven't found the perfect girly, princess name to go with Madelyn just yet!! It's alittle fustrating though since I really have things to get monogrammed and well...I need a name to do that! I think that's really the reason Neal won't commit to a name! HEHE
We have St Jude Country Cares events going on next week which should be lots of fun, more details to come!
Maddie has scans coming up starting JANUARY 23, 24, and 25. Please be with us in prayer for clean bone marrow and stable scans. If this is the case, Dr Furman has agreed to remove Maddie's central line from her chest! Wouldn't that be a wonderful blessing in deed! She has had her line now since Feb 2, 2004 just a month and a half after turning two years old! We have cleaned and cared for this line EVERY day since (nearly 3 years)! She has not been swimming since she was 18 months old!
We are hopeful in prayer that she will be able to have this removed and please pray that should it be able to be removed that it will be a painless and easy process as we have had a traumatic experience with this line removal once in the past when it was infected and then immediately replaced.
Anyway, we will then be planning a very special celebration for her at an indoor pool sometime in Februry! We are very excited about this but no planning until after scans so more to come!!
Well I think I have talked your ears off so I will go for now! Maddie is up dancing to the song Shake you tail feather after she and Tyler just watched Chicken Little! OH MY!! Take care and God Bless all the children of St Jude!
Love to all, Brandi
Monday, December 18, 2006 11:34 PM CST
Update:
Madelyn has been diagnosed with RSV. They are going to let it run its course right now and just watch her.
Hello there! Well there's good news and not so good with this journal, I'll start with the good!
Maddie had such a fun filled Birthday weekend! Friday night was her first ever pajama party! We had six little girls at our apt including her! They were all so good much to my surprise! I had some activities planned "just in case" the girls started squabbling but there was none of that!HEHE
All the girls had their turn at the activity desk painting pictures, they lined their slepping bags up and watched MK & Ashley movies as well as Strawberry Shortcake! Then a popcorn fight broke out in the living room (well that was my fault!)HEHE We played a game of CandyLand DVD and the girls really had a ball playing dress-up!
When the girls arrived we had Pizza and McDonald's! Dad and Tyler went out for Mexican then returned in time to sing and open presents before going back out to see the movie Eragon! Maddie, not wanting cake or cupcakes opted for a Brownie cake this year! We turned out the lights and sang HB and clapped for her BIG day! She was so sweet letting the girls help her unwrap her gifts! She had gotten a pair of Gymboree Pj's and a pink fuzzy robe along with some fuzzy socks like moms she had been wanting! She also received a ballet slipper globe as it reminds me so much of her playing dressup in her tutu! She received Polly pockets and more dress up clothes! She also received the day before a playdoh storage table set from Miss Donna and Candy Land Deluxe and a collection of books from Aunt Donna! Also a Barbie camera, fuzzy activity books and angel necklace with McDonald coupons in the mail! Plus we haven't even seen the grandparents yet!
I didn't get much sleep Friday night til about 3 am due to Maddie up coughing even though she had some meds. On Saturday she and her friend Bella were ready for a ride on the carosel at the mall! Afterwards we headed to a holiday party at the Hope house! Maddie was able to ride one of the horses she had waited so long for! Thanks to Mark and Mylissa for such a fun event even though the entire night was by candlelight!
On Sunday Neal and Maddie took Tyler to meet his dad and I did alittle shopping with my aunt Donna who was in town for the day. Then later that evening we took Maddie to her favorite spot in town-Build a Bear where she gained a new furry friend, Holly, who is a white poodle. (Actually it's not a poodle, it's a Maltese I think!) We sat in the floor with one of the workers as we dressed and accessorized her puppy! They sang Happy Birthday to her and made her feel extra special! Of course she was one Beary happy little princess on her 5th Birthday!!! OH! And just in case your wondering...the paci's did NOT make it into the puppy!
So, with all that said, today was quite a different day. Maddie woke up this morning with 102 temp and not feeling well at all. I was up by 7am so that when I called at 8 we could be at St Jude right away and of course they wanted her to come on in! We actually had a lab appt scheduled today for 12pm and then IVIG on Tuesday but now we will not be doing the IVIG just yet. Miss Janet had to stick her in clinic since they could not get a blood return from her line but she cried for just a bit then watched as they took 12 cc. She did so well she even got TWO toys from the treasure box! Some nail polish and we had fun shooting each other with the ice cream cone ball shooter! She also had an X-ray of her lungs which were alittle cloudy but subtle-whatever that means but apparently they are treating it as a cold/flu and has been put on antibiotics, cough med and Tylenol until nose and throat culures come back to see if it's viral or bacterial. We just want to pray that we have caught this early (which I believe we have)and that no pneumonia sets up. With damaged lungs that could be terrible for her. She is scheduled for all scans Mid January!
MOM news-I had my 4D ultrasound today as well and all looks well! I was alittle disappointed in the 4D as it wasn't as clear as I had hoped or seen on brochures. She kept her little hands over her eyes the entire time! Dr Hamby has rescheduled me another in one month cause he thought the same! I am 28 weeks along and have gained 16lbs! That's 7 lbs since last month's visit! WOW and I still have another holiday feast or two to go! It just seemed like much to me for just my 6th month but I'm just happy things are running smoothly! No names are set in stone just yet but I think we're close!HEHE
I will close for the evening as it's time for Maddie's Meds and my rest from the long day!
Love to all,
Brandi
PS NEw Holiday pics are in the photo album! I will try to get pics of B-day up soon but with her not feeling well, don't hold me to it!!
Sunday, December 17, 2006 11:46 PM CST
HAPPY 5th BIRTHDAY SWEETHEART!!!! WE LOVE YOU SO BEARY MUCH!!!
LOVE, Mommy & Daddy
Tuesday, December 5, 2006 11:33 PM CST
SOME CHRISTMAS PHOTOS JUST ADDED TO ALBUM!!! TAKE A PEEK AT THE LITTLE REINDEER!
Remember that we still search for a cure for Neuroblastoma-which has an 80 percent relapse rate and the number one solid tumor killer.
Visit LunchforLife.org and donate your lunch money in honor of Madelyn in hopes for CURE!
For every $5.oo in her name she is also entered in a drawing for a trip to Disney World!
Her Lunch for life number is 19437.
Thanks so much! We love all our supporters! GOd Bless!
Hello there!
First of all, I just finished reading our guestbook and I must say it is so encouraging to have the enormous amount of faithful friends that we have made throughout our journey! Thank you for your kind words, your prayers when I need them, and your love for our family!
I tend to always be the one who gets down the least you might say and I do like to try and stay postiive about things but I guess that was just one of those days that I REALLY needed to let things out and just needed prayer! So thank you to everyone! My heart is much lighter because of you!
We are really getting into the spirit of Christmas counting down the days each morning! When Tyler and Maddie get up every morning they head straight to the reindeer chalk board that reads "Blank" Days til Christmas and fills in the new number!
Neal and I have enjoyed the holiday lessons on Wed nights at church! This past Saturday was Breakfast with Santa at Sycamore View and Maddie had a reindeer painted on her cheek-the best reindeer you could imagine even with a tiny red nose and with one look in the mirror she sulled up and then as she walked away started rubbing it off her little cheek-so I ask her what was wrong with her reindeer that looked FABULOUS and she said, "It's not what Rudolf looks like and Santa won't like it" She's been very particular when it comes to pleasing Santa! HEHE
The kids both had their picture made with him and then all of us had one with him too! That was a first! I hadn't had my picture made with Santa since I was just a little girl myself!HEHE
Then they played lots of games and then she and Tyler went into the Secret Santa shoppe with their lists of people to buy for in hand! Neal went in with Madelyn and helped her pick a gift for me! Those are my favorite gifts! Last year Maddie picked out a little Wizard of Oz tin about the size of a half dollar and 1/2 inch tall from the St Jude gift shop and though I haven't yet found a use for it, it still lays on the dresser just because!
We have also been busy making lots of treats! We made Maddie's new favorite, fudge! Also, we've made 'Ginger Man' cookies and she and Tyler had lots of fun decorating those! She has always had a thing for the Gingerbread man and this year thats all she has talked about making! I don't think they were exactly what she thought they would taste like though! We attemped peanut brittle! HEHE We'll have to retry that one!LOL We have been getting our wrapping done only like just a few gifts! Maddie enjoys putting the tape on the presents with one eye glued to the nightly Christmas movies on ABC!
We have many exciting events and parties to attend including getting ready for her own Birthday coming up on the 17th! I always say that should have been planned better!HEHE
Anyway, here's the plan for Maddie's BIG DAY or should I say weekend! All she has talked about is having a sleepover so on Friday night we will be having some little girls over for a slumber party! She doesn't want cupcakes or a cake she just wants brownies, smores and fudge! Is she turning into a chocolate lover or what? Oh and she wants popcorn with the MK and Ashley movies and for all the girls to make sugar cookies! So I've purchased cookie cutters of all shapes! She has thought of all this on her own! Then on Saturday she is taking us to the mall to make a build a bear! That's what she says! Of course she is adament that she is NOT putting her pacis in the bear now! Of course I am going to sneak one in without telling her just as a keepsake of my own! She says she wants to bury the paci's and grow lollipops!
The truth is I really have decided to keep quite about the whole paci thing going away on her 5th bday now, just because it upsets her so that I don't want her to dread her bday even coming if she knows she has to give up her bestest things in the world! I just pray the transition will go smoothly afterwards!
I know you must think that's totally crazy that it's that hard for a mom and dad to NOT be able to get those things and just say enough is enough but it is the one thing or last thing I guess now to her baby days and quite frankly a reminder of her comfort through her struggles and it's just HARD! Anyway, one night we thought we'd take her on a Cinderella Carriage ride that they have in downtown Memphis and Sunday we will be celebrating Christmas and her day at my Grandparents! Whew!
Since Maddie has decided NOT to have a BIG Blowout Party as I had hoped for (it is her decision you know!) We have decided to have everyone involved by creating a TIME CAPSULE for her! We did this for Tyler on his first birthday! We have ordered the TIME CAPSULE and we would like to have it sealed by March 1, 2007! I have created a list of ideas for you to send or give to me for the capsule!
If you are reading this and have been inspired by Madelyn Miracle Milestones we want you to be part of this exciting event! Some of the things put in Tyler's capsule included but not limited to!
-a letter or postcard (detailing how you have come to know her and have been inspiried by her)
-coins, savings bonds
-anything that you would like her to have when she is grown!
-pictures of your family, hometown, etc
-humorous comments you remember about her
-remembering a time when you met her, seen her out someplace or spent time with us
You can always call me if you have questions at 731-377-9778!
This should be alot of fun knowing that one day she will be looking back on all the people and friends who loved and cared for her!
I will post the address to send MADDIE'S TIME CAPSULE MAIL to tomorrow since I will be using my mother, Sherry's address in case we move between now and then!
We realize this is a busy time of year to ask for such things and that's why we will not seal it until The first of March! (Before new Baby girl arrives!) I think this is plenty of time for me to get all her baby stuff I need as well into the capsule! HEHE
Well, the kiddos are sound asleep and I need to get some sleep as well since we have a big day planned tomorrow!Maddie and I will be talking on stage to about 140 Telemarketing volunteers in the St Jude auditorium in hopes that we can inspire those telemarketers to keep calling for those St Jude donations this weekend as they prepare to try and get donations for the Thanks and Giving Promotion! Apparently, telemarketing gets much negative response! You don't say!
Well, Take care and God bless you all tonight!
Love Brandi
Neal, Tyler, Maddie and Baby girl ?
PS Please remember to keep praying for our friend, Brent Nason and his family.
Wednesday, November 29, 2006 9:51 PM CST
she finally confessed.....
Hope everyone had a wonderful Thanksgiving! I had many families on my mind over this Thanksgiving who have lost children. My heart is heavy for each of them. I was reminded of the Thanksgiving blessings in my own heart of having our family together. It is truly a blessing! There is so much to be thankful for!
We had so much turkey and desserts! I gained 3 POUNDS just over the holidays! I have now gained a total of 11 lbs at 6 months along and have finally began to show! I can hardly wait for the Christmas food!
The kids had such a great time riding 4-wheelers, Maddie's Barbie jeep and playing Gameboys all week! They are getting really excited about Christmas coming! I think this will definetly be Maddie's best year since treatment began in 2004 for her to "really enjoy" Christmas! She looks great (well except for that chunk of hair missing in the middle of her forehead!) Did I mention that she took it upon herself to cut her hair!
OH let me tell you:
We were getting ready for bed a couple of weeks ago. She was in the bathroom suppossed to be brushing her teeth-she shut the door not wanting Tyler to come in so I just 'assumed' she was using the bathroom etc well she runs out laughing a few minutes later and jumps in bed and puts the covers over her head (not unusual in any way since she is always being so silly!) We settled down, read a story and went off to sleep! The next morning I noticed hair around the sink and a chunk on the floor but I cleaned it up assuming that it was from where I had trimmed her bangs two days earlier!
While we were sitting in the waiting room of my monthly clinic visit to the OB Dr It hit me that Maddie's bangs were NOT AT ALL STRAIGHT! I ask her repeatedly (maybe I shouldn't have been chuckling) if she had cut her hair and she repeatedly told me NO Mommy! All the events of the night before starting coming to mind and the hair from that morning now made perfect sense! It took some coaxing but she finally confessed with a grin!
We have many things planned for the upcoming month for a fun holiday season! Maddie's 5th birthday on the 17th is a Big one we are gearing up for but nothing in the works just yet since she is still trying to decide what she'd like to do! We have Breakfast with Santa at our church this Saturday morning! We've taken some Little Debbie Christmas cakes that Maddie picked out for the cake walk and some small items for the secret santa shoppe! We have our toy for the Toys for Tots ready for when we head back to Toys R Us! This is a holiday tradition that we started doing two years ago so hopefully it will always keep the kids in a giving spirit of Christmas!
Also I want to mention that though we are Thankful that Maddie is doing so well and that her cancer is not spreading we have to acknowledge that her scans still light up and that Neuroblastoma in general still exist! This cancer has an 80 percent relapse rate and is the #1 killer of solid tumor cancers according to the St Jude website. Thanks to a very generous and loving supporter of Maddie's, she has started Maddie's Giving Tree again for this year's LUNCH FOR LIFE campaign in the fight against Neuroblastoma. All proceeds and donations go directly to the Neuroblastoma Foundation for NB research. Maddie ended with 196 ornaments in 2005 and we would like to see this double in 2006! Please use the following giving code when visiting Maddie's tree at the lunch for life site: It is 19437
(using this code adds additional ornaments!)
I will try to get the direct link up with the next journal but for now just go to lunchforlife.org and go to giving tree then Madelyn Beamon to view her Christmas tree! This would make a great gift in honor of Maddie this holiday season! Also again this year they will have a drawing at the end of the campaign for a trip to Walt Disney World! Remember to use Code 19437
Thanks bunches and happy holidays!
Love Brandi
Neal, Tyler, Madelyn and baby girl ?
PS PLEASE KEEP OUR FRIEND BRENT NASON (ms/brentnason) AND HIS FAMILY IN YOUR PRAYERS AT THIS TIME AS HE IS ON THE VENT.
Also, we are so proud of all the St Jude Heroes who will be running in honor of our St Jude kiddos! If you signed up to run then you received a runners book with Maddie's photo on the front cover! We are so very proud of St Jude and ALL they continue to do for our precious girl! We HOPE that you are inspired as you run through the St Jude gates at the 23 mile and remember the MIRACLES of St Jude!
Sunday, November 19, 2006 5:41 AM CST
sometimes we just need a break...
I think this is as early as I've ever journaled since those restless nights being inpatient! I have not been able to sleep all night. This has been happening quite a bit lately. I suppose it has much to do with my hormonal changes! I snapped at Tyler today as he was complaining about the dishwasher not coming out as smoothly as he'd like and lets just say the entire top shelf is now broken-I know this apt is small and it just seems to get smaller every day. I reminded him that this apt is not my first choice in housing either and I can't help that I don't have my NEW dishwasher anymore or my New refridgerator from Lowe's or my New furniture in my New house that I once had...and my shouts were interrupted by my husband holding my crying four year old...My heart has been broken all day by the reminder and pain that comes along with having a child with cancer. Though I am forever grateful for all St Jude and many have done I am tormented by trying to pick up the pieces and start over...Our kids need a home and roots to grow...do we move, do we stay... I pray to God daily for patience and wisdom but I am not feeling any relief. I left for the day while Neal stayed home with the kids and I suppose he had a nice talk with Tyler and then with me over the phone. I have such a loving and patient husband...he seems to know exactly how to mend the pieces when I've broken them...
It seems I want so badly to have it all back like it once was...I am so thankful for Maddie being stable and believe me I thank Him daily but I am at a point where I just want to move ahead...Now with the new baby coming on I suppose my nesting is starting to come into play as well!
I remember we were in a similiar situation with Maddie as I was 8 months along when we moved into our very first home in Huntingdon, TN and there was so much pressure trying to prepare her room and have everything I needed and keep the house CLEAN before she arrived! I just couldn't stop cleaning or thinking of even MORE things that needed to be done!
It does make me feel better knowing that others have done what we are doing...while at church this past Wed night we were at our usual coffee house setting class where we sit at round tables lit by candle light and we met a new couple who now have three almost grown kids one in college, the youngest is 12...anyhow, we were talking about how we hoped to find a home before the baby arrived...though in my mind I wanted it NOW...but she went on to say, "OH, I remember when we brought our third child into our two bedroom apt..." It just warmed my heart to hear "third child" and it really didn't matter then to me that we may very well be doing the same thing! I just needed this little reminder to say, It's gong to be ok, that God has things exactly as they should be!
Angel Zoie Schnexayder's parent's are in this weekend with their new baby Mason! We had dinner with them this evening at Zoie's fav restaurant in downtown Memphis, Spaghetti Warehouse! It was so great to see them again and lay hands on that sweet and beautiful child of theirs! I will say just being in their presence tonight lightened the heavy emotions I was having today. I was reminded how very fortunate we are with having Maddie and our family together. She wanted only to sit between Miss Chastity and mom, Jane and she just laughed and had the best time and even got to hold baby Mason with paparrazzi in tow of course! She is such a happy child! I am just so very thankful this early morning now as I type that we are a God loving family and that emotions can be overcome!
The sun is coming up...I am kissing my kids and going back to bed now!
counting my blessings,
Love Brandi
Monday, November 13, 2006 9:50 PM CST
Hello there! Just checking in to say Maddie is doing SUPER!! We went to St Jude today for our monthly lab work and on Tuesday will be there for IVIG(immune system booster)in the Medicine room. This usually takes 3-4 hours but we only have one more dose in Dec to go and hopefully no more of that should her immunoglobins come back NORMAL. (A specific prayer request for that!)
The weather has been so up and down but we have mostly been in doing school work daily, church and our once a week grocery shopping trips to the SuperCenter.
We picked up Tyler from Jackson this afternoon and took my mom (tomorrow is her B-day!) and my grandmother out to lunch!
Neal is doing well also, he has just completed an Access certification in one of his classes and is now working on getting one for Excel! He is liking the new job with Volt Communications. We are in the process of looking for another home with the arrival of the new baby in March we surely are going to be bursting at the seams here! HEHE We plan to stay here in Memphis. Just pray that we find the perfect area for our family as moving from the small town to the city has been an adjustment for us and Tyler for sure. Just pray the the house we choose gives him peace and some comfort as he continues to deal with issues of last years break-in etc...
Also, this past week our bunny, Twitch that the Horrocks' have been fostering for us, died. Apparently, his foot got caught in one of the cage slats and broke. We haven't told Maddie yet. Maybe when we go over there we'll explain this to her but what's a bunny when she knows real friends who have passed on-you wouln't think it would be so hard for a mama to explain but each time is...I really try hard for the right words and the amount with each of them.
Well the kids have their list(s) ready and are excited about Christmas coming! We've been watching Christmas movies for the past week and drinking hot chocolate! My most favorite season though is Thanksgiving. It's always been important for us to be with ALL our family during this time! Well and all the food! We will be heading to Huntingdon as soon as Neal is off work next Wed and will stay til Sunday! Of course we have a wedding to attend, friends to see, a birthday party to attend & shopping in the same weekend! WHEWWWWW! Needless to say...we'll be busy bees!
continuing to pray for Maddie's complete healing,
Love Brandi
About baby girl, we are growing! I am at 24 weeks and have gained about 5 lbs. Just 4 months to go! WOW! I've been blessed to only have to take my iron and vitamin daily. Things seem to be going pretty smoothly! I am just getting to that "I know your there now stage" like bending over. My next appt is this Wed. No names have been set in stone yet!
Friday, November 3, 2006 0:11 AM CST
A fun-filled Halloween…
Hello to all!
Well we have certainly had a fun filled week! Let’s see last Saturday evening our fun began with Trunk or Treat at our church at Sycamore View. Tyler was not with us this evening but Strawberry Shortcake was! She was decked out with her build a bear hair and cute little freckles too! She was a hit! We saw many friends including Macy and Sophie Morgan, & Nurse Rachel Newsome from ICU! I was very surprised being our first time at this event at how huge of a turnout! I’m quite sure it probably had nothing to do with the fact that they also smoke hamburgers and hotdogs, have chips, drinks, snacks, and hot chocolate!! WOW!! Afterwards we headed over to the Montgomery’s home for candy sortin’ and playtime with the girls! We just love this family who we met on our first Sunday at Sycamore View in May! They have four girls age 8, 6, and 4 yr old twins! So of course Maddie just loves to be at their home!
On Sunday after church we did a little house hunting then headed over to the Hope House for chili and fellowship with many volunteers and St Jude families! It’s been nice to meet new St Jude families and quite a testimony for us to share our story with others going through what we’ve been through but I must say the pain of those dark days come back when I see kids in mask or going into transplant or lines hooked to fluids hanging from beneath their little shirts. Oh it just breaks my heart but I am reminded to be thankful to the Lord Jesus Christ and remind others of Him also that He is with you and will never forsake you!
This wasn’t a dress up dinner but just another occasion for Maddie to dress up anyway so with her jeans and pink shirt, she slips on her multi colored clown wig and makeup anyway! What a hoot! She always has so much fun there! She painted little pumpkins and played in the new indoor “McDonald’s type” play ground!
Monday was obviously a day of REST as I was just plain tired! Maddie has been loving doing school work here at home! By the way, thanks Nelda Hawkins for the Pre K workbook, she loves working in those! She’s been learning Spanish too! From Dora mostly but she’s really into going around the house asking what is this in Spanish? UUGGGHHHH! I really have my work cut out for me now since I haven’t taken Spanish since Mrs Harris 10th grade class, 14 years ago! And who would have ever thought we’d really use that stuff way back when!? And Tyler, he’s doing Geometry in the 7th grade? Is that right?!
Tuesday was our BIG Halloween festivities at St Jude! Tyler went as Darth Vader again but this time they had a whole section of Star Wars characters and his picture taken with Princess Leia and Obi-Wan Kenobi! He talked about that ALL day! Then Maddie was a Circus Ring Leader or Magician, complete with lots of make-up, sequin tails and a top hat, perfect for the circus held in the E-clinic! St Jude really goes all out for this 2 hour event! Each clinic and dept each come up with their own theme and it is very elaborate and fun for our kids!
That evening we all dressed up for a night on the town! I dressed as a witch and had my little black cat with me! We went out alittle late since dad came home from work sick with what he thinks was food poisoning from lunch but Maddie had never been house to house trick or treating since the Halloween before turning two when we lived in Huntingdon! So we went to a neighborhood with other kids and parents out and it was a treat for me to see my two kids enjoying this event together! I was snapping pics from the vehicle and listening intently to Maddie saying Happy Halloween or Trick or Treat with such gusto! And then saying THANK YOU as she left! She’s NOT my shy kid! Have you ever noticed?HEHE She would get in the truck saying mom I told the lady you were dressed as a witch and she gave me candy to give to you! So sweet! I told her just make sure you tell em mom likes CHOCOLATE! HEHE
Needless to say we have TONS of candy which we came home and sorted through! You know…chocolate all in ONE bag! Suckers in one bag, candy in another! Just something we find fun doing together and then we get to see what each one received!!
Well I guess I’ve talked your ears off about our Super fun Halloween adventures! I have pics coming and I can’t wait to see them myself! I dropped them off at Walgreens one hour on Wed with a three hour wait! Then just haven’t picked them up yet! UUGGHH!
Maddie has a photo shoot tomorrow at St Jude for the new Thanks and Giving clothing line! So be watching for her soon! It should be a fun event for her as she loves to try on clothes!
We have a big weekend ahead as well! (who said weekends were for resting?) Maddie has been invited to go skating on Saturday morning which is actually a lessons class! Her new friend Katie Rushing whos mom is a volunteer with HFH invited her to join in the fun! We are going sometime to see Santa Clause3 as well!
Well I need to get some shut eye so we’ll chat soon!
Love to all,
Brandi
PS I forgot to tell you about Maddie picking cotton Sunday after church! Well about two or three weeks ago she saw a field of cotton and said, Hey! I didn't know they had cotton in Memphis? So when out looking for a particular house for sale in the Brunswick area we came upon a cotton field so with my camera in hand of course, her and dad and I got out to pick some cotton!
Tuesday, October 31, 2006 9:51 PM CST
Happy Halloween!!!
I will be getting pics developed on Wed but give me a couple of days to post for I have 3 rolls just of the past weeks events!! I am too tired tonight to journal so I'll get to all the excitement we've had at a later time!
have a spook-tacular nite!
Brandi
Tuesday, October 24, 2006 6:38 PM CDT
Hello friends!
Well Maddie, Tyler and dad have all left this Friday evening for a night in Huntingdon with family! I had went to a baby shower this evening for a lady a our church at Sycamore View! She has already had the baby so we got to see 8 wk old Kayla Elise which made me really crave having another little girl now! I'm sorry but those pink girly clothes are just too darn cute! My husband was so sweet to make the sausage balls and ham & cream cheese rolls for me before he left! I'm sure I've mentioned before he's the "chef" of our home! He just loves to cook, grill, etc so lucky me!!
Maddie was not thrilled about me not going with her at first but she has an absession with chocolate pizza from Snappy Tomato Pizza! This week instead of a toy she wanted to have daddy time with just her and daddy going out to eat! So on the way to granmonna's they stopped by Snappy's in Jackson, TN for some chocolate Pizza! When I called after the baby shower tonight she was watching the old black and white Tarzan movie and not only has she eaten chocolate pizza but grandmonna had made another of her favs, "white pie" aka cheesecake! I called to tell her I had found a Strawberry Shortcake costume from a friend from church but Neal ask that I tell her tomorrow as he had just gotten her settled down! HEHE Yeah, she must have been pretty wound up from all that yummy dessert he was too afraid she get excited!
I'll have the entire day to myself tomorrow! WOW! What to do? Well I do need to go and pick up her finger print magnet from Paint A Piece! We had went there this past weekend for National Pottery day! They had face painting (Maddie was a kitty) and then did a thumb print on a magnet that was made to look like a lady bug! There were many designs to chose from and she chose the lady bug! Too cute!
We have Trunk or Treat at our church on Saturday night, where members park in the church parking lot and give out candy from the trunk of their vehicles! I hear that some go all out with decorating their trunk for the event! We've never been to one so this should be alot of fun for Maddie! Of course Maddie seems to have fun no matter where she goes! She's such a social butterfly...she gets it from her mother!
Hey! A social butterfly...that's a good costume for Maddie! hmmm! Well she really hasn't made up her mind what she wants to be maybe she'll like the SSC one! Tyler on the other hand will be Luke Skywalker! Anything Star Wars ya know!
Well, hope everyone has a great weekend and a safe Halloween! I'm sure we'll make a trip to the annual St Jude party on Tuesday as well!
Love to all,
Brandi 
We are 20 weeks along!! HALF WAY THERE!! Sorry I kept you waiting...I'm very scatterbrained lately!HEHE (At least for now I have an excuse!)
Love to all,
Brandi
Friday, October 20, 2006 2:08 PM CDT
ten little fingers & ten little toes....
Well today, Oct 20th marks a sweet milestone for our newest little addition coming in just 4 1/2 short months!
We had our sonogram today and the little toot is just 10 ounces but every little finger and toe was accounted for! All 4 chambers of the heart looked fabulous as well as facial features and the vertabre all looked perfectly normal and healthy! Tyler, Maddie & Neal were able to be in the room to view this little miracle bouncing around with me! The little hands just flopped around spontaneously and even started sucking its thumb at one point! My favorite part is seeing two tiny feet as if pressed up against a glass wall!
So as with Maddie we requested that the results of the gender be sealed in an envelope so that we could view it privately! We went to Perkins for brunch, the kids were so excited with each wanting another of their own gender of course! Maddie opened the envelope and she had our waitress read it aloud.....IT'S A......
OK so I can't tell you just yet! I still need to tell my mom first! Yes, at 31 I still report to my mother for these sort of things first! I've been trying to call all morning so hopefully it won't be long! So mom if your reading this you are keeping everyone waiting!!! Call me!
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As for Maddie she is doing super! The results of her ultrasound were negative!!! That means NO colitis! We laid low on the dairy all weekend so I'm not sure if that may have had anything to do with it or not! Also her HMA & VMA, the urine test for tumor marker were in the NORMAL range with one actually dropping from 28 to 20! Did I ever tell ya you are witnessing a miracle? We continue to pray for God's mercy and healing daily! Will you thank Him with us!
Glory be to God in all things,
Brandi (Neal, Tyler, Maddie & ?)
Monday, October 16, 2006 7:42 PM CDT
a friendly welcome back to the Jude...
Today has been such a long day at St Jude...we were scheduled for Med room at 10AM for a three hour appt for IVIG then an ultrasound at 1:30PM. Well the day went as follows...The day was beautifully yucky ha I say that because we needed the rain yet it was just so messy not to mention the brisk fall weather coming on. Luckily we had our clothes laid out the night before NO WAIT...we did but then her newest sweat pants were too big so we had to re group for an alternative outfit. (Not her faultHEHE)This is a girl that plays How do I look? every day by picking out three outfits and then trying on each one before deciding! Well, new rule when we have to be somewhere the next morning-we have to get our outfit picked out the night before! Anyway, we at least made it on time at 9:45AM with 15 minutes to spare but of course that was parking down in the basement in an unofficial parking space,OOPS!
So we checked in at registration(with the name Ashley!)and got the purple name band on our ankle just like always and then we check into the Med room. While we wait we run into a few old friends and some new before finding a tricycle and heading to the cafeteria for coffee and a cinnamon roll with Bella Horrocks.
Then we head to D clinic to play since we haven't been called yet. Maddie pretended to have an ultrasound of her bulging belly before finally having a baby while visiting with our new friend, Evan Thomason!
By this time, well it's 12pm, time for lunch! So after a forty five minute lunch we head to the Med room where they are just getting our chart and just about ready for us but WAIT we have an ultrasound in 45 minutes and the IVIG will last 2-3 hours. So we head to the waiting room at 1pm and get out the computer, Maddie plays with a new friend she met today, Westin Dietz's sister and they just played so wonderfully together then we got to meet Westin also! He is an NB patient as well. Oh and Gus from Miami is a 5 year old NB patient we had met earlier in the morning.
Well ultrasound gets us in at 2PM and we were finally able to get hooked up in the Med room at 2:45PM and left about 5! I hope I'm not sounding totally rude about the wait I mean I know St Jude time and it is Monday! hehe The whole point of me telling this story was I was talking to a nurse about Maddie feeling so well, her hair growing, my growing belly...and jokingly our long day and she grins and says, "WELCOME BAA-AACK!" HEHE I just thought that was hilarious! We have had a good day just she and I playing and talking and being silly together even if we did have a long wait!!
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OK so I will be calling Sandy in the AM to see if there are any results from the ultrasound!
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Speaking of having a good time, this past Saturday Neal, Maddie and I all went to the 10th annual Survivors Day Celebration! We were able to sit with the Breedloves during the speaker, Evan Handler from Sex in the City who is a 20 year Cancer survivor of AML. Maddie was excited to stay with the prechoolers doing crafts! But she insisted her name was Paige (that's her middle name!)She made three hand bags and Neal and I a card that said I heart you! So sweet! The above pic shows where she was transformed into Minnie Mouse during the giving out of survivor pins and door prizes with our little friend, Gregory Allen who we were sitting with winning a door prize and also the Grand prize of an IPOD nano! Yeah Gregory!! We had a nice lunch by Back Yard Burgers while listening to the Geckko Brothers Band! Before leaving Maddie insisted she wanted to dance so we cleared a table (everyone had just about gone by this time) and she danced her little heart out for the last three songs with her friend Macy Morgan who we also go to church with! I joked that she had closed down the barHEHE! She seems to always be the last to want to leave!
We headed over to the Horrocks' Habitat for Hope home for a Birthday Bash for Zach Nason who turned 9 this weekend! Brent wasn't able to attend. Please be with the Nason's in prayer as Brent continues his road to healing.
On Sunday, after church Maddie was ready to have her pumpkin carved so dad got out his newest toy, I mean tool! a battery operated Power Master pumpkin carving knife! He and Maddie had such fun carving the Disney character, Roo into her pumpkin-well, he sawed...she sat and ask questions! Tyler just got home this evening so they are actually carving Yoda while I type!
We went back over to the Horrocks again Sunday for Brunch and to see little Caden Pauley from Lincoln, Nebraska who is in for checkup this week. He's so precious!
Well that's our big weekend and day! Maddie is feeling great! She must be just plum worn out from the day as she has already eaten dinner (mash potatoes, corn, biscuit and cheese) and fast asleep by 8PM!
That just means we'll be up extra early in the morning! Filled with homeschooling and a trip to the library.
New pics coming soon and results of ultrasound so check back!
Love to all,
Brandi
Brandi
Thursday, October 12, 2006 8:11 PM CDT
The results are in....
MIBG today is STABLE! There is NO change from the July scan! So this means the area around the left orbit is still very dim and her abdomen where the original tumor was not completely resected still lights up but NO larger, NO smaller, NO brighter!! Praising and thanking God today and everyday!
Her CT of the chest, abdomen & pelvis shows the same... tumor STABLE & UNCHANGED! Thank you Jesus for your mercy!
She does have some chest congestion in the lungs but to be expected since she's had cold symptoms lately. Also there is some bowel wall thickening possibly from the colitis that she's had in the past. Hopefully, this is not coming on again.
We have appts for IVIG (the immune system booster) on Monday and we'll also do an ultrasound of the colon.
I do want to thank my mom (Grandma Sherry) so much for coming and helping with Maddie these past two days while Maddie was "lit"! Of course the Halloween surprises were a PLUS so the kids were really excited she came with new games and a Star Wars movie!HEHE Since I am now "with child" it was recommended that I not hold Maddie close to me for 24 hours after being injected with the nuclear injection or 'glow juice' she gets for the MIBG. Also it's best not to go into CT with her as well!
I have a funny story to tell ya, I know my friend Danielle whos's a big Target/Fred Meyers fan will surely get a kick out of this one-last night we took the kids to the pumpkin patch to pick their favorite pumpkin for the annual carving! Well we first went to the very well organized "fancy" patch in Cordova until we saw the prices...8 bucks for the smallest up to 50 for I guess you would call the "bigger ones". Anyway, needless to say the kids were ok with loading up and going down to another patch for looking! So we stopped at a TN Vols tent set up at none other than the local Wal-Mart...yes Wal-Mart for this years pumpkins!! They also had decorated hay bales set up...perfect for pictures and the cost for a large pumpkin...just $3.28 each! The kids were just so excited and I'll post pics soon! So here's to Happy pumpkin pickin'!!!!
Love to all,
Brandi (Neal, Tyler, Maddie & ?)
Monday, October 9, 2006 5:55 PM CDT
SCANS THIS WEEK....Stay tuned!
another great year...
Well Neal and I have successfully completed another loving year together as husband and wife! Today is our actual anniversary but we celebrated our seven years this weekend in Nashville. My husband had plans reserved for us Saturday evening at Chaffin's Dinner/Theatre. It is a place we love to go I think it's our 4th time! "Death Trap" was the play we watched and boy was it a twister! The buffet style feast is always great and boy did I eat my share (I'm eating for two now ya know!) Thank you Neal for the wonderful evening out and another great year together! I Love you!!
MAddie is doing great! She is becoming a home body, not wanting to go out of the house much! Actually she has discovered the amazing world of INTERNET! So her heart is set on MyScene.com, NickJr.com, Disney.com & her newest fav is stardoll.com where you can pick a star and dress her up and put on make-up!
She's had a bit of a cold lately but it hasn't slowed her down one bit!
Tyler is moving right along with school work. We are just trying to work in some adventure time with other homeschoolers as I've signed up this year with MHEAs ( A Memphis home education association) where kids do things outside the classroom together, activities, sports, projects, etc but we haven't had a chance to get too involved just yet.
Neal is liking his new job and is going to class at U of M part time three nights a week too.
I went to my very first OB appt this past week! Yes I know, it's about time seeing that I'm 17 weeks along! Well I went to my first appt in July for lab work, then had to miss my second appt for lack of a sitter then it took a month to reschedule which would have been in Sept but when Neal's better insurance kicked in I switched docs! OH! And I really like my new doctor, Dr Hamby! Not that I ever saw the previous one but I needed to go somewhere that I could take my kids if I needed to!
So anyway, Dr Hamby thought I was father along than I thought, at least 20 weeks he thought so he sends me over to the other clinic for an ultrasound. I called Neal as I was really excited thinking we may just find out what we are having but low and behold I was right on the money, just 17 weeks and five days! So needless to say we still don't know the baby's sex just yet!
Well, I'll be going but before I do please remember to keep all those that have lost their children in your thoughts and prayers.
Maddie is having her scans on Wednesday and Thursday of this week. We should know results late Thursday afternoon! Please pray with us that she'll continue to stay stable or better yet that she'll be cancer FREE!
Love to all,
Brandi
Neal, Tyler, Maddie & ?
Sunday, October 1, 2006 4:49 PM CDT
Our sweet Jake Owen Rayborn earned his angel wings on Thursday afternoon, Oct 5th. Please pray for peace and comfort to his family as they transition to life without there precious Jake. We love you Jake and family!
Update: Neice Emma is doing much better. She has been off from Kindergarten all week due to keytones in the urine but Friday that was negative so school should resume on Tuesday as normal!
Sunday 9:25PM-PRAYER REQUEST: Please pray for my neice, Emma who is at Cardinal Glennin ER in St Louis, MO. She is 6 years old with Type II Diabetes. (Her photo is above)
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Down home-Southern Style Brent Day in MISSISSIPPI....
Well we made it back from Brent Nason's BIG day in his home town of Matheston, MS. The weather was just sunshiny, breezy and absolutly perfect for the outdoor event! Did I mention it was BIG?
Maddie and I finally made it down there around 12 noon. They had events going on from 7am to 9pm and though we missed the morning events the 6 hours there was great for Maddie! She had so much fun! It was such a memorable event! She just laughed and played with her new friends, Kimie and Ashley, Brent's cousins I believe they are.
That morning we all got up early, cooked sausage and biscuits and Tyler got his game face on...the boys headed to the UT/Memphis game held here in Memphis this weekend so Big orange was everywhere! Then Maddie of course wanted a Big orange T on her face as well then she insisted I put one on me too-it had to go on my hand though because of the make-up!
OH! Speaking of make-up I have a funny story about Tyler and his teenage quirks...he found some orange and white paint in the Halloween section at Wal-Greens the other night and wanted to use that on his face for the game and Neal ask if he had his make-up on so they could go and with a sunken head and eyes looking up from his brows Tyler said, It's NOT make-up, it's called FACE PAINT! HA Then last night he brought home a souvinir the team handed out and I said OH, you got you some pom poms and again he said, MOM, they're SHAKERS NOT POM POMS!! Too funny! As a mother of both a boy and girl, I have to get used to speaking the correct lingo I guess!
So back to Brents DAY! There were Brent shirts everywhere! I even got one of my own! No sizes left for Maddie. UGGHHH! She was alittle sad but evn more sad when all the cakes were gone at the cake walk- her favorite carnival activity!
We did get to see Brent and his mom for a brief time! He seemed to be having a good ole' time riding the golf cart around. The gospel music in the background was a nice touch and at the end of the day was prayer time for Brent and his family. There were so many people there praying for that sweet boy-very touching in deed!
On the way out of Matheston (3-5 min tops) Maddie fell fast asleep! She was just so dog gone give out! She and I stopped in Granada, MS and ate at the Shoneys there. I normally do not like Shoney's, I guess since the one back close to home in Martin, TN got shut down many years ago but this one had the BEST pancakes in the world, so Maddie said! Maddie did so very well on the entire trip with not one ounce of fussing or whining about anything! I think she was just too excited about the whole day in general! She said she couldn't wait to tell daddy about that carnival we went to!! At the event, you bought 25 cent tickets and used them just like at a real carnival for the bounce houses, dunking booth, little ducks, face painting etc. They also had a booth set up for child photo IDs, DNA swab and finger printing to be done for just 5 dollars-Lord, I just hope we would never have to use that but now it's there just in case I reckon!
We also met many new friends and Caringbridge supports including Mrs Jill (I'm sorry I can't remember her last name at the moment) and her son Cooper. She is a friend and church member with our St Jude friends, Jeff and Amy Breedlove from Knoxville. This sweet lady flew in just to attend Brent's Big Day and finally meet everyone! She had given Maddie a painted, pottery cross with handpainted roses and read I've prayed for you! So very sweet! We hope to be able to visit with her more in Knoxville when we get up there soon!
Well I don't have pics just yet from Brent's Day but I do have others that I plan to post later tonight. For now we are heading to the Montgomery's, some friends from church to have dinner and fellowship.
Love to all, Brandi
Neal, Tyler, Maddie and ?
PS SEE added pics above! Photos below are from the St Jude/Chili's Day!
Tuesday, September 26, 2006 12:14 AM CDT
Well Hello there friends!
I hope everyone is still with us as I am now feeling so much better from the nausea that I thought would never subside! I had forgotten how tough making babies could be! HEHe OK so that only means I'm in full force to update more often on our sweet girls Miracle Milestones!!
We had such a great weekend. Dad was off this past Friday so we pretty much just hung around the house and did absolutely nothing! Saturday Miss Donna, a friend from Dyersburg came to visit and she and Maddie played Barbies til I finally was able to lift my head and get ready for the day (I had pulled my neck muscle from picking up Maddie at the mall a couple days before)-she's getting way too heavy to be toting-obviously! PRAISE!! Anywho, the storms were coming but we were all so hungry we headed to the mall to eat and browse but that was quickly bypassed as the parking lot was totally engulfed with cars-the Mid south fair is in town and that night was the rodeo but with all the rain I guess everyone decided to take cover at the mall! So Maddie chose another restaurant, none other than the Cracker Barrel! It was fun getting to see all the new Christmas stuff already out!! I just love the gift shop there!
Maddie didn't find a toy there so we headed for the ABC, QRS store (Toys R US) to pick out a toy! See we just started this new check list as a reminder of getting things like her teeth brushed everyday, her clothes & toys picked up, hair combed, homework done, etc just little things for her to check off daily and at the end of the week she can pick out a toy or movie, this week it was a Straberry Shortcake movie!
Miss Donna also brought the kids back a souvinir from Seattle Washington so thank you Miss Donna! Next time I'll take a Star Bucks card!HEHE Just kidding! Her sister works for the corporate headquarters in Seattle! OH! And she also brought the Baby to be its first quilt! Thanks so much!
Yesterday the kids and I got up and went straight outside to paint the Yukon windows for our BIG St Jude/Chili's day! Dad was finished with work by lunch so we were all able to eat lunch together at CHILI'S!!! One time a year Chili's Bar & Grill donates 100 rofits to St Jude and yesterday was the day for that! I so absent mindedly forgot to post this on the site for I know so many of you would have went if you had known!
We were happy to see many of the ALSAC ladies along with Angel Ray Perry's momma, Faye! It was so great to see you-thank you for always checking on Maddie!
Also we got to see Brent and Tonya Nason along with Brent's cousin! She may have a pic of the kids to post so you can visit his site to see!
Then that night we saw Landon Pitre and his family! We can't wait to see you all tonight at the family gathering at the Hope House!
We had a great meal with The Horrock's last night along with new friends, Ashley and Ed who are wonderful Caringbridge supporters of ours!
Today dad brought back the old Camry we had just traded for asmall S-10 truck that he would be using for work. Apparently, the "bad" lights were coming on and it was not getting the gas milage it should be so after almost two weeks the dealership who still hadn't cashed our check just reversed the deal and whala we are back to square one on the wheeling and dealing for another truck! He and Tyler are actually out in one as we speak! A Tangerine colored Rodeo. Tyler thought of the Vols of course!
By the way the boys are gearing up for the big Memphis/UT game this weekend while Maddie and I will be heading to Mississippi for Brent Day!! Nason family, be looking for the Brightly Painted vehicles coming through Mathison honoring Brent!!!
So Maddie and I are off this Tuesday afternoon for some time outside in the beautiful weather and then to eat smores at the Hope House!
Love to all,
Brandi-Neal, Tyler, Maddie and ?
PS Check back for new pics soon!
Friday, September 22, 2006 8:46 PM CDT
URGENT PRAYER REQUEST: Please pray for Jake Rayborn and his family. He is in ICU and being weaned from the vent at midnight in prayer that he will breath on his own when the life support is removed. He is at his most critical point in his journey right now...(my quote here as I am just speculating from a mother's heart)please visit his site la/jakeowen (I can't imagine anyone not having this site already but there it is again) as the family is doing their very best to keep everyone updated on this precious warrior! We love you Jake and we're still believing!
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Girls day out....
Well, I just can't tell you enough how blessed I am to see our sweet girl enjoying the best days of her life!
She feels great-looks great what more could I ask for!
Today Neal had to make a trip to Huntingdon so he took Tyler with him so that Tyler could go to his dad's for the weekend. Maddie and I were in high gear getting dressed this morning knowing we would have a full day of just the girls!!
We headed to our favorite shops of Saddle Creek, Gymboree, Baby Gap (her favorite), and the Children's Place! She found more pink suede boots (she had out grown her other ones), some pretty head bands (she's really into these lately, she probably has 20 no kidding!), a new halloween shirt and much more!! Then we headed to Chick-Fil-A, one of my favorites and McDonalds before heading for a picnic in the park! The weather today was gorgeous with the trees swaying in the wind-it's my very favorite season! I think Maddie is starting to love it too! She's been studing her seasons in school and she says, "LOOK MOM, the leaves are falling everywhere!" After our fun on the monkey bars and swinging (she always says "higher momma"!)dad called and was headed to the car races where one of our friends owns the track there so Maddie and I headed to Target for OH MY GOSH-3 hours! We looked at every toy aisle (except for boys of course!), grocery aisle, clothes, makeup, scrapbooking and Halloween costumes OH and our favorite the clearance aisles too!! We even stopped by the food court and had a Cinnabon and milk for snack! YUM!!
The rain poured down outside while we were there so we got to miss the bad weather! She was just ready to come home and get a bath! You see theres a story to that too! Yesterday while we were at the mall we stopped by Master Cuts to look for some shampoo that might help in promoting hair growth as she is just loving her hair coming in and wants her little piggy tails to "hang down"! So the sweet lady there hooked us up with some shampoo and conditioner by Cat Walk that has many vitamins and smells like "Chocolate Chip Cookies" in Madelyn's words! She let us try a sample of some volume cream too so tonight has been all about having a girls night doing hair and nails!
Well now my hairs done so we're about to watch a movie and settle down after a long fun-filled autumn day!!!
Love to all,
Brandi and Maddie
Photo caption: A pic of Maddie Sept 2006 in the shower as Snow White in her shower cap!
Tuesday, September 19, 2006 10:31 AM CDT
It is with a heavy heart that I tell you our sweet friend, Ben Bratten has passed away this evening. He has fought Neuroblastoma for nearly four years. We got to see Ben laughing and smiling with a child life specialist during our July appt just before he headed to transplant! Please keep his mom, Lynn, dad, Barry and his family in your prayers during this time.
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Hello there! As I was reading over my last entry I thought WOW who in the world wants to read such a lenghty entry! HEHE So I thought I'd do another now that I have alittle more time!! Right now the kids are doing school and we are waiting for dad to come home to unlock the truck since my keys are locked up with my purse! go figure! So we missed our yummy McDonalds trip for Maddie's favorite sausage McGriddle and now we've just settled for pancakes at home!
OK So many have been asking me WHERE IS MADELYN IN TREATMENT? Good question!
I will give you an overview of the past year-Madelyn's last chemo, ICE was in Sept 2005 where she turned back into a beautiful baldy! In Dec 2005 Madelyn was the first patient at St Jude to undergo anti-body therapy, hu1418-IL2. She did two rounds before going on the vent for the third time due to leaking of the capillaries.
As she recovered and scans were done in April we were seeing slight improvement of the residual primary tumor in the right abdomen, very little remained in the left orbit and bone marrow was clear! OH and hair begins to grow! We did scans again in July and saw no change, all was stable and bone marrow clear!
With the continuation of sinus infections from April to June and the common cold taking a month to get over, ID decided to test her immunoglobulins and whala...they were still low meaning we needed an immune system booster! So once a month til Dec we go back to St Jude for this 2 hour infusion in the Med room! Not too bad considering what her little body has been through for the past two and a half years! We are very thankful, blessed and praising God daily!
As for our next scans they are Oct 11 for the MIBG injection and CT and Oct 12 for the MIBG and clinic visit! That is it as long as they do not find anything! They want to give her a break from aspirates and MRI!! Many Thanksgivings indeed!
I hope this helps some in knowing where our sweet girl stands in treatment and I will surely fill you in on her many adventures along the way and many pics of her lovely hair growing too!!! I can hardly believe how far we've come and how wonderful she looks and feels!
Neal's is home now and we have a two hour drive for a visit to my grandmothers so I will go for now!
Love to all,
Brandi-Neal, Tyler, Maddie and ?
Saturday, September 16, 2006 10:00 AM CDT
Safe in Illinois…
Hello friends!
I hope today finds you doing well! It seems I can never catch a break to do a more often update when not on treatment. We are just too busy playing and going I guess! Praising God for that! However, I do want to thank our prayer warriors, stalkers hehe, friends, family…etc. so much for always checking in on us as we are so grateful to have you on this journey!
I will try to fill you in on some of the fun activities going on in Madelyn’s precious life! Well we recently took a trip to IL to see my sister, Alina and her family and what a blast we had…mostly just sitting around catching up on each others lives and eating all day everyday! Neal and Doug went grocery shopping and came back with the only wooden ice cream maker in town after going to three stores to find one! They have such a beautiful backyard with a nice play set for the kids and lots of room for throwing football with Tyler! The weather was breezy and perfect for grilling and homemade ice cream for the Labor Day weekend!
The first night we were there the kids played inside and out with more laughter than you could imagine and could hardly stop to eat-well not so good for our little girl who by the next morning was lethargic, and throwing up her breakfast. Not sure of the local small town hospital all I could think is St Jude’s was 6 hours away and Children’s Hospital of St Louis was 2 hours away and further than I wanted to risk though I knew it was a case of dehydration. So Neal and I along with my sister took her into the local ER at Fayette County Illinois and boy was I in for a shock! As I went in the door with Maddie I explained that I had a 4 year old little girl with dehydration. She is a cancer patient and has a central line. We needed her electrolytes checked and fluid administered right away. With a smile they said right this way!
Once getting to our room Madelyn now wide eyed and taking in the fun kid painted room sat with her aunt Alina while we talked to the nurse! Well the first nurse suggested an IV but we explained to her that she has a line for drawing labs and administering fluids so that would not be necessary. It just so happened there was an Oncology nurse on call! Is it ODD or is it GOD! Thank you to Jean and Peggy!
One we explained how much to discard and the labs needed along with the heparin needing to be diluted they were ON TOP of the situation! The Dr wasn’t familiar with the whole line thing either and seemed alittle nervous but soon came in after the fluids were administered again and first told Neal what a great dad he was…SMILE and then to tell us he was at awe of our knowledge and understanding of Madelyn’s medical treatment and he had the utmost confidence in doing exactly what we had ask! Well how’s that for nursing care! We all worked together and we were in and out in and hour and 15 minutes!
Of course by the time the fluids started Madelyn was sitting on the bed being read to while eating Vienna sausages and chocolate chip cookies! We stopped by the store for some Gatorade and Gum (her request). She sipped on Gatorade and water and was feeling better in no time!
OK so the boys stayed from Friday til Monday and then had to head back so Neal could go to work and Tyler to start schooling and it didn’t take much convincing from my brother in law for me and Maddie to stay an extra week with my sister and we could all meet half way to take us home! We had so much fun shopping at the local mall, and going junkin as she calls it at the local Antique stores! Also my other sister Ashley came into town and us girls went to see the movie World Trade Center. I thought it would be more of a documentary of what I already knew~very raw and emotional. I will be posting pics of our trip soon!
I want to apologize to one of our Caring bridge supporters, you know who you are for us missing you while you were in Memphis. I hope you had a wonderful trip here in Memphis, TN for the first time!
Maddie just got her IVIG (Immune system booster) in the Med room on Sept 11, the Monday after our trip. It was also the day Miss Brooklyn and her mom came into town for their scans. I had the opportunity to eat dinner with Danielle one night, take in some shops on Beale Street and then get some Star Bucks (decaf of course!HEHE). It’s nice to have a moms night out ever so often! Then the girls got together last night for a play date before their trip back home this morning! Please visit them at or/brooklyn for an update on her scan results.
I am overwhelmed at the amount of kids suffering especially lately it seems. Please keep our St Jude kids in your prayers. I had the opportunity to take dinner to the Brattens and to the Lopez’s this week thanks to Habitat for Hope for calling us with this need. I feel even more blessed to be able to share and do as I remember all too well of the need for a home cooked meal from time to time! Rubin Lopez is a 15 year old who has 5 brothers and sisters from IL. He just had his transplant about 15 days ago and doing well!
I will attempt to give you a list of the kids in need at this time and hope that I don’t leave one out
Jake Raborn is in ICU on a vent after “complications” from lung surgery and MRI shows more new spots on the brain. La/jakeowen
Ben Bratten is in ICU on a vent according to Lynn, his precious mom, Sept 21 will make two months on the vent. He is having complications from VOD and on dialysis. I wish I had a site to give you but he does not have one.
Brent Nason has three new spots and bone marrow is no longer clean. Please visit his site for the whole story from Tonya at ms/Brentnason. BRENT DAY is coming up on Sept 30!
Hallie Gravell just had scans and will get results on Monday. Visit her at la/hallie.
Brooklyn will receive scan results soon as well visit her at or/brooklyn
As for Madelyn, she will have scans the week of October 10. I have talked your ears off so I will update closer to time on where we stand and the exact timing of these scans.
We are headed to Huntingdon for visits with grandparents and my aunt Mary from East St Louis is coming in on Sunday! Can't wait to see you!
Love to all,
Brandi
Thursday, August 31, 2006 9:21 AM CDT
HAPPPPPYYYYY BIRTHDAY TYLER!!!!!!!! WE LOVE YOU!!!
Hello friends!!
I am back! We have just been enjoying the last few days of summer before starting back to home schooling! We are still waiting for a few books to come in so we will start next week! However, Madelyn has already started so to speak…she loves doing school so everyday she sits down and writes her letters or numbers or goes through her K workbook then she says OK it’s time for dance class! So she gets on her tutu and tights and dances in the living room! Too cute!
We are heading to my sister’s in IL this weekend, hopefully no one will get sick this time! Madelyn has been feeling so GREAT! She just plays so hard…this past weekend we were over at Granmonna & Pa’s (Neal’s parents) with the boys and she has bruises on her knees, arms, and now a big one on her bottom where she got so excited she tripped over her suitcase and landed on the handle. The bruises on the backs of her arm are actually ones that will not go away since having all those G-shots to boost counts after chemo. Of course we still have the other reminder of her treatment days as she still has a red raised place about the size of a quarter on her bottom.
GET THIS…on a good note…we are moving in on our ONE YEAR anniversary of NO CHEMO! We have not had any chemo since Sept 2005! PLUS…our TWO YEAR anniversary of our stem cell transplant which was done Sept 20, 2004 when she was just two and a half years old! We are just thanking the Lord for the beautiful blessings of life and enjoying our little sweet/tart!
Well, Tyler will be 13 on the 31st! We had an early surprise Star Wars party for him at my mothers home in McKenzie, TN this past Sunday! Thank you mom for all the hard work you put into making his day so very special! It was complete with a full life Darth Vader that looked so real! My mom has an antique tin man that stands about 7 ft tall which she covered with a floor length black cape, the hands covered held a red light saber and I had brought one of Tyler’s Darth Vader talking helmets that covered the tin head completely! There were red and green latex balloons on every window, door and even a faux tree with green lights and balloons, his name was done in lights and the table center piece was a red and blue light saber which looked like long candles! We had a nice dinner and completed it with a star wars light saber white cake and my mom’s very own (she’s a cake decorator) chocolate truffle cake! But best of all we dimmed the lights and watched a slide show made by my mom as well, of Tyler from baby to present with the Lion King Theme song as the background (The Lion King was his very first birthday party theme!) I think he was alittle embarrassed but he did a good job of grinning and bearing it!LOL I’m sure he’d say the highlight was opening the presents! Maddie was excited to help in this! He walked away with $145.00 in cash and many nice gifts! We had gotten him two Darth Maul light sabers from Borders Books you hook together and makes an 8ft one! He collects these and has about 30 but these are very realistic and more for collecting than using! Madelyn got him the Encore Edition DVD of High School Musical! His new favorite Disney channel movie, a wonderful movie by the way if you haven’t seen it with your kids!
He made his first Ebay purchase last night by buying a NEW Darth Vader skin for his DS for just $10 ( normally sells for $20!) and a Spiderman DS game for $12 (norm sells for $30ish!) He’s really gettin into computers, email and long hair! UGGH- I’m not sure how far I can go with this one but he just thinks that Zack & Cody’s hair is awesome?
I will get pics posted soon!
I just wanted to say a very special THANK YOU again to our friends at Oak Grove Baptist Church in Dresden TN for another donation of support sent to our account! God is so good!
Also thank you to our Canadian friend, Robin Brunet for the special T-shirt with Teddy Bear’s waving Canadian flags sent to Madelyn! It fit perfectly! I will try and get a pic, it’s too cute and very thoughtful!
Also to Miss Judy VanNord from PA for all the many happies sent to Madelyn!
Angel Lori from MI, THANK YOU for sending the kids happies as well!
And also Miss Nelda Hawkins from Huntingdon, TN for your weekly encouragements sent to us and happies for Maddie!
Well I guess I tend to get alittle long winded when I don’t update more often but just know that we are just enjoying time together and catching up with those we haven’t seen in the past couple of years due to treatment, getting more involved with our new church, trying to combat morning sickness and trying to find a home for our growing family! I will update with more on all that another time!
Love to all
Brandi (Neal, Tyler, Maddie & ?)
Saturday, August 12, 2006 1:44 PM CDT
Hello friends!
What a LOOOONG time it’s been! I know many of you have been checking in many times with no update but just to assure you things are going very well with all of us! EXCITING NEWS about Madelyn....
March 2007 is the due date! Madelyn is sooo very excited! Well, we all are now that it’s said and done! HEHE At first I thought, what in the world are we thinking but the good Lord above has it all planned out and we will TRUST in that always! ALSO, Neal has landed a position in Information Technology just what his degree is in and he already has experience in doing the job so that was a plus as well! It is a Telecommunications company out of Georgia but he will handle commercial IT here in the Memphis area! We’ve been waiting for over a year for this to happen and finally many prayers have been answered! Within the next few months (before the baby arrives) we are hoping to find a special place here in the area to settle our growing family into!
We haven’t been doing too much this past month when Madelyn got sick with a stomach bug of some sort but she has been so much better and just plays her heart out everyday! Truly a blessing in deed! She changes from princess dress up to everyday clothes quite often, it’s her favorite things to do but it seems I get stuck with the cleanup! Hehe Also I’ve been really sick for about 3 weeks with the morning sickness and all (oh! how it's all coming back to me now!) but I think it’s finally behind me for the most part!
Madelyn only has her paci’s at night-it’s so cute she gets up every morning and takes one last suck on each one (that’s about 6) before handing them over for the day!
Tyler is back home and we’re gearing up for home schooling to start back after labor day! He’s not too excited but hey he’s about to be a teenager so I assume that’s normal behavior! He does say he likes home schooling though! We got his TCAP test scores in and I was alittle apprehensive since with all the time at the hospital over the past year, I’m not real sure how much learning he was really absorbing but I was pleasantly surprised! His national avg scores were 70-80 percent with 60 percent being normal/avg for homeschoolers! We were so worried about math but mostly all was avg with some parts of math testing above avg! They are the highest scores of any years in school, can you believe that! We were so proud of all our efforts, esp Tyler for hanging in there as he has had to adjust to life without his friends, Madelyn's diagnosis and many days at a children's cancer hospital for the past 2 and a half years!
As I was saying, Tyler will be turning 13 on August 31!! He just blushes when we mention being a BIG teenager!
Madelyn had her IVIG for the month and so far all is well with just alittle aching in her back the first day. Madelyn had a clinic visit on Thursday with Dr Furman and all was great! The MRD test of the Bone marrow is still not back.
She was so excited to tell everyone our exciting news! She just grins and giggles with excitement! When people ask her what she wants, a boy or a girl? She just says I don’t know we haven’t found out yet! So either she doesn’t really care which it will be or she’s going to be real upset if it’s not a girl, like she once would say?
She’s been showing me how she’s going to take care of the baby as she dresses and feeds and burbs and changes diapers and holds her baby dolls! She is even practicing her swaddling as she folds the blanket just perfectly around her baby! I think she’ll be a big help and a perfect big sister-just what she’s always dreamed of!! My first dr visit is this coming Thursday- I think I’ll take her with me since it’s just lab work and she’s used to that stuff and I must say I love the attention she gives me when I’m getting poked by needles and such! She so loving!!
Well we’re off to take the kids to a movie this evening and Madelyn is taking Nelly, her monkey to Build A Bear for repair on his monkey sound!
Take care and I’ll keep you updated on any changes, fun stuff or exciting events!
Love to all,
Brandi
PS We will be perserving the new baby's cord blood in hopes that it will be a perfect sibling match for Madelyn should she progress and need another transplant. We pray that she will continue on her road to a complete earthly healing as she is headed to but we also pray that the match will be a success as well!
Wednesday, July 26, 2006 11:12 PM CDT
Well Connie from Canada~that really IS a REAL grasshopper!!! hehe Neal's parents have been finding those HUGE TEXAS grasshoppers around their yard! YIKES!!
UPDATE: Well, my sister called and little Katie is sick with double ear infection, fever and sick so we were unable to go to IL. My sister and I have been on the phone together, saddened since we are really missing each other. Madelyn wasn't too upset so that's good! We will try for another month soon!
BETH & SYDNEY ROBEY DAY IN MEMPHIS!!
On Friday we had a new friend Beth, who we met at Relay for Life in D'burg this summer and her daughter, Sydney came into Memphis! We took them on a tour of St Jude, the memorial gardens and best of all was the semi-annual St Jude gift shop SALE going on NOW! Then we headed downtown to TGIFridays for dinner and then to Maggie Moo's for some great icecream! Maddie and Sydney made some well wishes with our pocket change and then we ended the evening by us getting a tour by Beth & Sydney to the top of the Peabody to see the ducks! What an awesome view from there! If you have not been there I suggest going to see this great view of downtown Memphis! Quite Breathtaking! Thank you Beth & Sydney for the really special time we were able to share with both of you on Friday! We had such a great time!!
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Hello to all!
Maddie is doing super! She is playing everyday nonstop mostly with her baby dolls who she feeds, bathes, and changes clothes regularly! We've also been making some really cute hairbows together! The first year at St Jude we made fleece blankets & last year we decorated tons of flip flops but now we're on a hairbow kick!
We have lab check and clinic on Thursday afternoon. Just a checkup from having the C-Diff. This should be short and sweet as Maddie seems not to be having any problems what so ever! Praise God!
So we lost our cell phone for about a week recently and had an old phone switched over but for those of you who were honored to hear us rant and rave over not finding our phone it has been found! In the bottom of a brief case of Tyler's school books! So now we'll get it switched back soon and I'll be able to call those who have not heard from me in a while!
She has been doing so good not having her paci's during the day but only at night when sleeping! She has even napped without them without asking! YEAH!! For those that don't know this is something we have struggled with breaking as it's always hard for me not to give in for a little girl whose been through so much!
This weekend we are heading to Illinois to see my sister, Alina. She and husband Doug have three girls, Emma, Gracie and Katie who Madelyn is very excited to see! She has already colored pictures for all of them!
A special thank you to Mark & Mylissa Horrocks of Habitat for Hope for having us over for dinner! I cannot say enough about this amazing CHRISTIAN organization who has devoted their lives to helping care for families build strength together! Please visit them and learn the many ways in which you can support them!
Love to all,
Brandi
PS HAPPY BIRTHDAY to my brother, Chawn who is having his GOLDEN BIRTHDAY! He'll be 27 on the 27th!!!
NEW PHOTOS IN THE ALBUM!!
Saturday, July 22, 2006 12:42 AM CDT
Hello Friends!
Well I apologize for not getting back with results on Monday but the truth is they were not in! Remember No news is good news! But I do have results now that I will get to in a bit!
We have been so very busy this past week. Madelyn started perking up and eating more last Thursday and by Sunday she was ready to go pick up her 5 year old cousin Cade in Nashville and then the two of them stayed five nights with Neals parents! She had so much fun telling me of all the fun things they did like playing Mother May I, eating a half galling of Strawberry Icecream (she has eat like a pig all week!). She said Cade wasn't allowed to come back while she was there though cause he is an "aggravator"!!LOL One day they were both arguing over who was the strongest and Madelyn told him if he didn't leave her alone she was fixin to put a pair of panties over his head!LOL
The break was just what Neal and I needed to get our apt in the best possible condition for Madelyn's allergies and sinuses! We rented a shampooer and cleaned all carpets, we replaced our filter with a $15 dollar allergy sensitive one, bought a HEPA filter, filters for all the vents and an allergy sensitive matress cover! We have cleaned dust from ceiling to baseboards and Lysoled all toys! Then we were able to eat a nice dinner out alone at P.F. Changs which we had never eaten at before!
We want to say a very special THANK YOU to my friend Liz Powell Anderson and her family and church in Martin & Dresden, TN for their efforts in raising a significant amount of money for us this past week! We love you guys! What a blessing for God's perfect timing! Neal is making every effort to find a better paying position in the IT dept at various locations in the area but with no luck just yet. Please say a special prayer for something to come to us soon.
Also THANK YOU to Angel Lori from Michigan who recently sent us pics of a luminary purchased in Madelyn's honor at their Relay for Life! That's so cool~all the way in MI! THaNk YoU!
BONE MARROW RESULTS:
We got a call on Friday from D-Clinic and they have found "one cell" that is abnormal. They have stained it seeral times and still abnormal but the Pathologist nor Dr Furman isn't so sure that it really means anything considering that her other scans are stable! However, they are waiting on the MRD (Minimal Residual Disease) stain to come back which should be end of next week. This test is a more intensive test of finding NB cells in the marrow.
PLAN: The plan for now is to get scanned again in October. If the MRD shows anything at all the scans will be moved up to Aug/Sept. and chemo will start. Ouch that's hard to say~just please cover Madelyn in prayer that this not be the case for our precious girl. At this point we are not worried that it is anything so we continue to play hard as Madelyn has done all day since getting home to her freshly cleaned home!
My brother's gall bladder surgery went very well on Thursday and he is home recovering!
We would like to say HAPPY BIRTHDAY to my neice Abby tomorrow who will be 4!!
Love to all, Brandi
Friday, July 14, 2006 5:23 AM CDT
UPDATE: FRI PM-Clinic called and Madelyn DOES in fact have C-DIFF. So while Madelyn hung out with Miss Donna, Neal & I picked up her Flagile antibiotic from pharmacy then stopped for a hot fudge sundae at Sonic! YUMMY!
Madelyn is feeling good today she has played with her kitchen set and changed clothes three times! She found some Christmas clothes to wear today and pretended Santa was coming! We made some Jello together and she has liked eating that!
We are excited that The Horrocks are now HERE in Memphis and preparing their new home! Please pray for this transition to be smooth for them, their children and families as they continue their efforts in supporting families!
Also Bella is having her scans on Monday the 17th! Please pray for her to continue to be cancer FREE!
Also wanted to let everyone know that Tyler was baptised at church Wed night among all his peers! We are so very happy for his decision and his hunger for the Lord, Jesus Christ! He amazes me in his wisdom and thirst for knowledge!
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THURSDAY JULY 13 RESULTS:
GOOD Friday MORNING!!!
What a relief at this point! Madelyn's scans are stable! THANK YOU LORD! Her CT of the abdomen shows improvement of the secum indicating that the colitus is not present!
Her MIBG is stable with No new spots! Her Bone Marrow aspiraes will be back on Monday but Dr Furman is not worried by the way she presents!!
Today (I mean yesterday!) has been the BEST day yet she has felt in three weeks! We had both grandparents here and with us during our clinic visit! Afterwards Mom took Tyler with her for a night and then off to his dads and we headed back to our apt with Neal's parents but then Madelyn suggested going to IHOP! She LOVES pancakes lately! She ate a whole silver dollar pancake and started on another! She ate three fourths of a piece of bacon! Then last night she said she wanted to have a slumber party in the living room, watch Mary Kate & Ashley while eating a snack and then get up to watch the sun come up! So we did that! We set up Tyler's twin Temperpeudic matress in the Living room and made a tent with sheets! She ate some mash potatoes and apple juice! We watched The Cat in the Hat instead (changed her mind!) We woke up in time to see dad off to work this morning and we are now up waiting for the sun and watching cartoons!
Well I need to go now here comes the sun!
Love to all,
Brandi
Sunday, July 9, 2006 10:58 PM CDT
Prayer Request: Our friend, Mitchel Baughman has relapsed. We met Mitchel and mom, Mary while staying at the Target House in 2004-2005. They have been at Sloan Kettering for over a year receiving 3F8 antibody, one we hoped Madelyn would eventually get to. He has had his port replaced and chemo to begin soon. Please visit their site and let them know they are cared for and if you could just cover this family in prayer. www.caringbridge.org/ok/mitchel
Please cover our sweet friend Landon and his family in prayer as well. His scans revealed still some cancer in his bone marrow. More treatment to start soon. www.caringbridge.org/visit/landonpitre
Also Please pray for the Schexnayders as this is the 2 year heavenly birthday of their daughter Zoie.
Madelyn had her CT yesterday in which she was very emotional the entire day. She goes from one extreme of smiling and playing on the D clinic computers to crying for no apparent reason except that she just wants her daddy. (Not that that's not a good one but just that she isn't hurting etc) Like for instance too, she ask for something to drink the other day and daddy just simply ask can I get you some Sprite or Water instead of milk since your belly has been hurting and she just burst into tears. She says she is so mad cause her belly is hurts all the time. I am having to give Hydrocodone a couple of times a day for the past week now. I seen Sandy in the hall and told her Madelyn's new symptom of having heat flashes. Our small apt is the equivalent of a mini freezer and she starts sweating at random times with her hair so wet it will stick straight up! She'll cry and say "I'm soak & wet"! She got sick again around 10PM last night and she just mostly lays on the couch with occassionally going to her desk to make a picture for someone. She always ask me to write their name down so she can write it on her paper herself!
Her MIBG is today. I was not a bit worried but with all these issues that they can't figue what is going on with my baby my heart is heavy and I am starting to become emotionally distraught myself, Neal included. Neal and I are praying without ceasing. No matter what God is so good! Please pray for a miracle of all cancer-DEAD! We HOPE to get results tomorrow! WE LOVE YOU GUYS SO MUCH and just THANK YOU so much for standing beside us thoughout this difficult journey.
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Hello friends!
Well Tyler has made it back from church camp and had the time of his life! It was ironic that when we pulled up to his cabin he was sitting on his bike talking to a friend (now mind you this is the same boy who didn't want to go at first)and just barely waved and said, "That's my parents" under his breath. What a shocker! Is this the teenage years coming or what? I wasn't prepared for that! My mom went with us so we all had dinner at the camp together before leaving. My mom helps keep me grounded as she reminds me often of things I would do as a teen!LOL Of course I don't believe it or maybe I don't remember!HEHE
I was excited to see Macy Morgan and Sophie at camp as well!
Tyler's been talking about the friends he's made non-stop and eager to be baptised again. He did this when he was six but he feels he needs to do so again! So tomorrow we're headed to talk with our preacher! I'm just so proud of him, he's such a great kid!
Madelyn has been feeling a bit better! She is still having the diarreah and even had a 102 temp on Saturday. Dad stayed home with her today while Tyler and I went to church. She has sat in the recliner ALL day and played Jo Jo's circus and Dora on the computer. She has also been playing with her Princess Plug n Play video game! We have watched The Grinch Who Stle Christmas & The Cat in the Hat today in between playing games!
Madelyn has Bone Marrow Aspirates and Biopsy Monday AM and it would make us so happy if our prayer warriors would please stop and pray for a CLEAN marrow. We should get ALL results on Thursday but if any come sooner we will let you know! She has already said she hopes to see Dr Picazzi and Mr Horace tomorrow! She always ask me when she has proceedures if they are "early" and if so she wants to wear her jammies and fuzzy slippers to the hospital! I think she's even more excited to be getting her sleepy medicine tomorrow!
Well we have an early schedule so I'll be going-of course Madelyn is watching JoJo and doesn't show signs of being tired yet!
Love to all,
Brandi
Friday, July 7, 2006 8:44 PM CDT
Feeling under the weather....
I called clinic yesterday regarding my concerns with Madelyn diarreah, nausea, not eating in two days and low grade temp. After taking her in for lab check her ANC was now up to 16,000 and white count was 15. So they hooked her to an hour of fluids in clinic then we picked up an overnight bag since she had lost weight. Nothing much said other than just waiting for cultures.
Before we left the hospital yeaterday we got to eat dinner with a buddy of ours from Louisana, Gregory Allen along with is mom, grandmother and sister Zoe! He just has the sweetest, funloving personality! Visit him at his CB site at la/gregoryallen.
So today we headed back to SJ for lab appt and followup visit with Sandy our nurse practitioner and Dr Scapek. Madelyn ANC and White counts were down some to 11,000 and 12 respectively. That's good! She had gained some weight overnight with the fluids from 13.4 to 14.7 kg. That's good too! However, Miss Debbie in A/T got a temp on Madelyn of 38.6 oral. So now we're getting cultures done out the wazoo! Then we head straight to clinic to a room (they don't want any kids with a fever roaming the halls!)(That meant no lunch too!) Madelyn gets cozy in a warm blankie (oh two warm blankies)and goes to sleep teary eyed from just being ill and not feeling well.
ALL CULTURES ARE NEGATIVE for C-Diff and Rotovirus. There are a couple other things being tested but need more time to grow. (Or NOT grow would be best!) Dr. Scapek is looking up all things regarding IVIG for side effect etc but ultimately, they feel Madelyn has gotten some sort of stomach virus that needs to run it course. They would only put her inpatient if her counts were down.
She has slept off and on ALL day. She has not eaten. She has alittle thrush today. We stopped and got a McGriddle before going to our early AM appt today but I ended up eating that in clinic since we were unable to eat lunch today. We finally left with another bag of overnight fluids about 1:30.
Then it was off to pick up Tyler from camp! I will fill you in on this tomorrow as we are all very tired and I am still catching up on his weeks events! Madelyn slept all the way home from Milan (2hrs) and still sleeping. I hope it's just the needed rest she needs to recover. Before getting sick these past 3 weeks, she'd almost stopped taking a nap.
We have lab and clinic again in the AM. On a good note, Madelyn has not thrown up in two days and she is coughing very little to almost none!
Love to all,
Madelyn's mommy
Tuesday, July 4, 2006 10:10 AM CDT
UPDATE: Neal & I took Madelyn into the Med room tonight to see the Dr on call who was Dr Inabi who I REALLY liked! He was just so very attentive to us and Madelyn and just always kept us informed while we were there! Just another AWESOME Doc at St Jude!!
Anyway, Madelyn has not eaten ALL day. She would not eat any breakfast or lunch at dinner she ask for tomatos and ranch dressing (another favorite) but didn't touch that either. She did want to sit at her desk and paint rainbows today and we played a game of hide and seek in the house with dad! Then she took a 3 hour nap but woke up very ill and saying she didn't feel well. She had only 10 oz of fluids all day. She has gotten sick once for the past three mornings and she's had diarreah since getting the IVIG.
After some lab work her electrolites were normal but her ANC is still up at 13,000, normal for her is around 2,000. SO you would think infection-well the nasal cultures from Saturday are negative for viral infection hummmm but she has all these cold symptoms? They've been given a stool sample tonight and they started 230cc of fluids for two hours. She is also on an overnight bag of fluids just to keep her well hydrated!
We got to see some fireworks on the way home about 9pm and reminised on where we were the past two 4th of July's! In 2004, our first year at St Jude, the four of us watched fireworks from the 5th floor of the Grizzles House. And in 2005, we celebrated with a big party with Zoie's family and Miss Danielle and Brooklyn!! What a fun time we had! And both years attending the St Jude 5K Firecracker run with the Pearlman's!
Hoping Tyler had a fun 4th-I'm missing him more than ever just knowing that I can't pick up the phone and call him. I feel like he's been there for months! He still has 3 days to go!
hoping for Maddie a better day tomorrow,
Brandi
Tues July 4 10:10 AM
Madelyn probably had her best night last night of the past two weeks with little to NO coughing. At least I wasn't up getting meds in the night like before and she is still resting at his hour!
Thank you to our visitors Miss Donna & Emilee last night and for all the happies brought to Maddie and Tyler! Maddie was happier than she'd been all week having some company! She even went to McDonalds for a strawberry milkshake! She has been eating a few bites of pancakes in the mornings and a few bites of mash potatoes here and there OH and some Rotel and chips but not much more than that. I made cupcakes for the 4th and she did eat a bite of that!
She has lost a couple of pounds, she is about 32 lbs. I am going to try her Ensure Plus back today and see if that helps some or if she'll even take it. Or call the clinic to see about some Periactin (appitite stimulant).
Well just wanted to say HAPPY FOURTH OF JULY but also I wanted to let everyone know that next week July 10, 11 & 12 are Madelyn's SCAN DAYS! She will be having Bone Marrow Aspirates/biopsies, CT, MRI & MIBG along with a urine tumor marker. We are looking forward to celebrating stable scans!! No matter what God is in control.
Love to all,
Brandi
PS Neal got Tyler's bike to him at camp (2 hrs away)! Haven't gotten any calls so I am hoping he's having such a great time! We sent him a letter on Monday and Maddie sent him a card that she found in my box that had a teddy bear with THANK YOU on the front! LOL I just had to laugh that she was thanking him for being at camp! HEHE Not really but it was cute!
Sunday, July 2, 2006 10:44 AM CDT
Hello friends!
So I received Madelyns results of her immune system function:
~~~~~~~~~~~~~~~~~~~~~~LOW HIGH
Immunologlobulin A
L30...................41 to 345
Immunologlobulin G
L281..................341 to 1,960
Immunologlobulin M
68....................43 to 163
Well at least one was normal! I have not found out just yet what these numbers and letters mean exactly but you can bet I'm about to! We're sorta like nurses in training here ya know!
Madelyn received her first time of IVIG in the Med room yesterday and all went very well! She is very happy for the most part with some occassional whining but who could blame her with a yucky cold. She did get a fever of 101.1 last night that kept us in the recliner rocking and snuggling til bedtime! Fever is a side effect of the IVIG and will likely happen each time she gets it.
She is laying here beside me as I type this Sunday morning after having some pancakes! She hasn't been eating much at all but drinking well~mainly Sprite and water is all she wants. She says her throat hurts which makes her drool under her paci down her chin. We haven't been able to make it to church now for two Sundays and two Wed nights from having a cold. Sure don't want to pass it around!
Well now were just hoping that this IVIG gives her immune system the boost it needs to get over this cold thingy~I'd like to have had alittle dose myself!LOL These colds have been making it real hard to visit our inpatient friends who we miss so much!
We'll my mom who has Tyler,has been helping him get some things needed for camp (thanks mom!) and now we're off to get him to his first ever church camp today! He's gotten more excited about it so I'm just hoping he last the five days without calling home! I know he'll have so much fun! He gets to take his skateboard, rollerblades, bike, watergun, football and much more....WOW!!
Please continue to pray for all kids our kids with cancer. Have a Happy & safe 4th if I don't get to update before then!
Love to all,
Brandi
Friday, June 30, 2006 12:39 AM CDT
In the above picture Madelyn had been at the hospital that day and had alittle accident that resulted in Jin Jin, who was waiting for Jake in the radiation waiting room, running upstairs to get some of Jake's shorts for her!! LOL What our families won't do for each other! SMILE
*More potos added in album!
Today is Neal’s Birthday! HAPPY BIRTHDAY DADDY WE LOVE YOU!!!! Just one more year to the BIG 3-0!hehe Been there done that! Yes, He’s two years younger but I look younger so that’s what matters!!hehe
So, we just thought we were off from the Jude…
Well it seems that we’ve been to St Jude for a continuous cold/sinus infection for the past couple of months. We’ve been back now for three appts since mid-May. Yesterday while I was at the Dermatologist getting stitches out of my foot and leg from some moles removed a couple of weeks ago, which all came back fine by the way, Madelyn was with dad at St Jude being seen by infectious disease. She has had a sinus infection and been taking antibiotics but then last week was seen by Dr Hartford and given antibiotics however, this week Madelyn and I have been pretty sick with cold symptoms~coughing, sneezing, sore throat, itchy/watery eyes but no fever. I don’t think I moved much from the couch for three days~Madelyn was on one and I on the other with occasionally her wanting to snuggle up with me.
So yesterday they also ordered a chest X-ray (since she has had lung issues in the past) and all was CLEAR!! However, today we got a call from Sandy, our nurse practitioner saying that the additional lab work ordered to check for immune system function came back LOW. So they are going to give her some IVIG in the med room tomorrow. We're grateful to ID for ordering this additional lab work so now we have a heads up on her immune system function!
The plan is to do IVIG once a month for the next 6 months.
Apparently, with transplant and all the treatment and ICU visits post transplant her body has just lost some immunity on its own so this will help boost her immune system. I have said many times just the common cold can be dangerous for our little ones with little or no immune system I have done alittle research on this and there are some side effects www.webpediatrics.com/IVIG that are rare but as we all know Madelyn’s little body is so susceptible to side effects (hence 3 times on vent from side effects alone). Please Pray that God will continue to comfort her and protect her precious body from tumor growth and for the IVIG to be safe and effective on her.
We have cancelled plans for the dinner/theatre mainly because we have not felt well but we still plan on taking Tyler to camp on Sunday! Please pray for him as well as this will be his first ever camp and he is anxious and very nervous.
Love to all,
Brandi
Monday, June 26, 2006 11:53 PM CDT
Hello to all!
WAY TO GO JAKE Rayborn!! Jake is finally off the vent! Many praises to the Lord above for the miraculous powers through many whispered prayers!! We know all too well the feeling of coming off sedation and the transition to life off the vent and my heart goes out to this family and to those who have ever been there. We are now rejoicing and thankful for this precious life that now needs prayer of a complete healing on earth! Beautiful Blessings in deed!
Brooklyn went inpatient in the wee hours Saturday morning and has pneumonia. Please pray her and mom Danielle as they were here for a checkup that turned into something unexpected. www.caringbridge.org/or/brooklyn
Brent Nason is inpatient with mouth sores from chemo. I only got a chance to talk to Tonya briefly at Sj the other day on his arrival in so please visit his site for complete details at www.caringbridge.org/ms/brentnason
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As for you my precious Madelyn we have been very busy this month of June! Let’s see since last journal Grandma Sherry had her surgery and all went well. They say she is now seeing 20/20 in that eye! The best part was her staying the night with us and going to IHOP for pancakes!!
Your friend Brooklyn came into Memphis on Wednesday and we presented Brooklyn with an early Birthday gift of going to the Ringling Bro. Barnum & Baileys Circus! We had so much fun and even met another St Jude patient, Asia who is also in D-clinic. Tyler’s favorite part was watching the circus freak with his hair straight up goofy around the entire show! You, Madelyn said your favorite part was the beautiful flying acrobats on the swings! We all had little red noses to wear and acted quite silly together!
After Brooklyn’s visit to the Jude on Thursday the moms, girls and Tyler headed for a day of window shopping and a carousel ride at the mall! We always try to get this in as this is a favorite memory of yours! We showed Miss Danielle the The Avenue at Carriage Crossings outside mall in Collierville that we like to go to but since Brooklyn was sleeping we just got a cookie at the Great American cookie Co that was all you requested (so yummy)!
This past Saturday our family traveled to Huntingdon for daddy’s best friends wedding! They are now Mr & Mrs Corey and Candace Todd! Congratulation to the two of you! Madelyn, you had so much fun blowing bubbles at them!
Well we have had much fun spending time with Brooklyn~we are really going to miss them when they have to leave but for now we’re just happy they’re here!! Daddy’s birthday is on the 30th so you could all wish him a Happy 29th! We have planned a trip for the dinner/theatre in Dickson on Saturday then Tyler will be attending his first ever camp with our church where he’ll stay 5 nights! He has never been away from home for more than one night so I’ve been praying this will be a positive experience for him!
Madelyn is doing so very well! Her sinus infection seems to be getting better but still coughing much at night. She is always spunky and full of energy! She’s been doing lots of coloring pictures, crafts and doing scrapbook pages with me!
Til next time,
Love Brandi
Saturday, June 17, 2006 3:57 AM CDT
Having another great week!
We all went to see the movie CARS before Wed night’s church service-quite funny and delightful! Maddie and Tyler love going to the movies as a family! We had a chance to watch the show Tues night at a drive-in with the new church we are attending (which I thought would be fun & different for a change) but Neal wouldn’t have been able to go that late, anyway, Tyler insisted that he only wanted to go to a movie when we ALL could go! Isn’t that just the sweetest!
Well, I also had my Birthday celebrated with Neal and the kids yesterday as well! We chose to go eat dinner at the Japanese restaurant, Kyoto’s in Olive Branch, MS. This is what we did last year as well-the kids really enjoy watching the chef cook our dinner at the table! Then Tyler got to enjoy some time with his new friend, Jordon who is the brother of SJ friend Lindsay Harwell www.caringbridgeorg/ms/lindsayh Thanks Carla for having him over! It’s really nice for him to have met someone his own age here to hang out with!! Lindsay just had her 3 month scans on Friday-visit her for details!
Then tonight we met my mom and niece Abby in Jackson, Tn for another birthday dinner at Snappy Tomato Pizza! Thank mom for dinner-we sure miss having our favorite pizza anytime we want it! What a treat!!! Madelyn and Abby sure do miss each other! They were busily playing with Madelyn’s ring, cell phone and baby doll during dinner! They giggled and laughed and afterwards Madelyn told Abby to take her cell phone & baby doll home with her to baby sit! WHAT? I was shocked at the idea thinking we would not hear the end of her crying for it later but so far I haven’t heard a peep about it!! HEHE You can just see the love between the two of them!
Thank you for checking in on us through the bad times and the GOOD! God is so good! Praise Him for Maddie's continued good health! We are very grateful for your love, prayers and support and enjoy reading the guestbook often!! Madelyn is getting more and more into wanting to visit her friends web sites and me reading her guestbook to her!!! YEAH!! FOR SIGNS OF GROWING OLDER!!! Oh! And by the way, she is also into wanting to call people on my cell phone so don’t freak out when you receive a call from her (if I have your #) because she wants to call herself and loves to [FLIP] to phone down after saying goodbye as well!! LOL
PS Habitat for Hope is having a 1st annual Bluegrass for HOPE Festival in Fort Meyers, FL TODAY Saturday June 17! Please stop now and PRAY for good weather and a successful event! All proceeds go to helping support, serve and care for children with cancer and other catastrophic illnesses! PLEASE SUPPORT THEM AS THEY HAVE SUPPORTED US!!! www.habitatforhope.org
Love to all,
Brandi
We are looking forward to another funfilled week! VBS starts tonight! My mom is coming on Monday to spend the night-she is having caterac(sp?) surgery so please pray for a blessed outcome and our friend Brooklyn is coming in on Wednesday!!
Tuesday, June 13, 2006 2:54 AM CDT
Please keep the families of Jacob Duckworth www.caringbridge.org/fl/jacob and Will at www.caringbridge.org/ky/will in your prayers as they are grieving the loss of these precious boys.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Another fun and exciting week…
Before you read further, I will just tell you Madelyn is doing FABULOUS for those of you who wish not to read the entire journal of our past week!
But for those who want the full account…keep reading!
It seems I can only get in about a once a week update with all that goes on in our busy life at the moment (not that it wasn‘t before) but we have been really putting our heart and soul into having the best summer we can with hopefully no more inpatient trips in our future! We all really deserve & cherish this time away from “hospital stuff” ! When Madelyn feels good we all feel good! When she’s on the go we are all on GO!
Friday evening Neal and I along with Madelyn enjoyed an evening in Dyersburg as we were invited to attend this years RELAY FOR LIFE reception and activities! Madelyn, the youngest survivor in attendance, made the front page news as she was asked to carry the banner with the many survivors signatures including her own that she carefully printed for the one lap walk for opening ceremonies! Though we only lived in the county for 5 months prior to being diagnosed and then finally making the decision to sell and be in Memphis so that Tyler could be with us~I am humbled by the love and support of the Dyer Co community for us and Madelyn! We just thank you so much for making us feel so loved!
Madelyn had so much fun riding the ponies and feeding the goats though she ended up sitting her cup of feed down as they got too close to her hand!HEHE Thanks Miss Donna, Tabitha and Emilee for being so kind~Madelyn loves her new dresses and bracelet-OH and seeing Nick! (That’s Miss Donna’s grandson she adores!)
Saturday was a day of wedding bliss as Madelyn and I attended the wedding of our St Jude buddy, Jake Robert’s mommy to Mr Rob Madsen! Jake, www.caringbridge.org/visit/jakeroberts, is 5 and was the first NB patient we met at St Jude and ironically on the same protocol and pretty much the same treatment and both doing about the same-active tumor spots, bone marrow clear, stable scans-no treatment! Also he lives just down the road from us so we enjoy spending time with him as often as we can!
We picked up dad after work and headed over to the reception and then to Jake’s MiMi’s house! She is such a hoot if you’ve never met her and if you have you know what I mean!LOL We had such a fun time looking at boring pictures of her trip to London and the naturists!! HEHE As we were leaving Madelyn was in hysterics wanting to spend the night there with Jake and his MiMi. I finally give in but just knew I’d be coming to get her in the middle of the night however, I was wrong! This may seem silly but I did shed a few tears just before falling asleep as it felt really lonely with her not being in the bed next to me. I know now that I do not deal well with that situation so she may not ever get to go to a sleepover again until she’s 30!
We had church the next morning so dad was back over there bright and early for pick up along with some M& M cookies she and Jake made together! For the past two Sunday’s Madelyn has not wanted to go to class but says she really likes it and does fine on Wednesday nights~I thought we’d take her to our class this time and let her see how “boring” it is…well you know, compared to coloring pictures and singing and playing after lesson, to a four year old I thought she’d see it as boring and want to go back! She was quiet as a mouse and just sit in my lap the whole time but after class she said she thought she’d go back to her class next week! (SMILE)
After church we headed to Huntingdon for Neal’s family reunion. Madelyn ran around with all the other kids and amazed everyone with her energy , spunk and appetite as she kept going back for food and more to drink!!
We picked up Tyler along the way home from his dad’s and went through D’burg. We stopped by Miss Suzie’s house who was Madelyn’s sitter when she was diagnosed and then headed over to Busy Bee’s Preschool to play with Miss Robin and the kids who know Madelyn and then to Miss Karen and Jada’s who we haven’t seen in awhile! Madelyn sat and held Jada’s 8 month old son, Noah in her lap and pretended to be a big sister that she dreams of being so she says often!
So needless to say we keep pretty busy visiting and doing things we haven't been able to do in te past couple of years!! We just thank God everyday for another day! Thank you for stopping by and keeping an eye out and your heart open for our little girl! We love you guys!!!
Til next time,
Brandi
Tuesday, June 6, 2006 11:12 PM CDT
YEE HAWWW!!!!
We made it back from Duke Fest 2006 in Nashville! We managed to get an autograph from all the original characters including Bo, Luke, Daisy (above), Rosco, Enos and Cletus! Neal and the kids are crazy about the Dukes of Hazzard but I was just amazed at the die hard fans these Duke Boys have-there were license plates from so many different states and orange ‘01’ was everywhere! Tyler said it was the best weekend ever!
Thanks Emily for inviting us to the condo for the weekend and dinner too! It was so much fun catching up and just hanging out! We took Madelyn and Tyler to the Family Fun Center where Madelyn played Miniature Golf for the first time! It was great to see her cheer with excitement every time she made a shot! Everyone made a hole in one at least once but me! LOL Emily and Madelyn rode the Go Karts while Tyler and I rode solo! Madelyn just loves seeing people she hasn’t seen in awhile! She was just so happy this weekend even just sitting on the patio eating pop tarts & Coke! We also got to see another lifelong friend of mine, Kim who joined us all for dinner at the Olive Garden! It was just so good to see you guys this weekend!!
We had labs and D clinic today as a follow up to last week’s inpatient visit due to the swollen right eye. All looks great! The eye is completely better with no matting! She is full of life and energy! She will continue with an antibiotic, Amoxicillin for two weeks. Madelyn’s MRI showed that she had a sinus infection but also showed the tumor on the left orbit has IMPROVED even from the scan in April!!!!!Praise Him!!!
We were happy to see some friends lately! Miss Hallie Gravel is back doing scans she is the same age as Maddie. She is doing an oral chemo for NB in remission. Visit her at www.caringbridge.org/la/hallie
Also Ben Bratten (no site) was in D clinic the other day and being so silly-he had us all laughing so hard! He is about 4 weeks away from doing a donor transplant so this will be a very delicate time for he and his family but I will keep you informed.
Our friend Landon www.caringbridge.org/visit/landonpitre is out of the hospital and looks great except that he is very tired from the radiation that continues daily. He and Madelyn had clinic next to each other today and Landon still had his sweet personality shining as he lay in the wagon trying to lift his head to say hello and then bye to Madelyn when he was leaving! Madelyn told him to get better so we can play!
Brent Nason is still having some issues with pain in the jaw so please visit them at www.caringbridge.org/ms/brentnason to find out more as I have not seen them in a few days.
Please say a prayer for all of our St Jude friends and families and for all those who have suffered a loss.
Love to all,
Brandi
PS Our SJ friend, Angel Zoie’s parents Chastity & Travis Schexnayder have recently found they are having a BOY!! Visit them at www.caringbridge.org/la/zoie~CONGRATULATIONS Chas & Travis!
Saturday, June 3, 2006 1:37 PM CDT
We are home from the hospital!! Madelyn's MRI showed nothing abnormal with the eye! Her eye looks much better with just some slight matting in the mornings but no infection to the eye was sighted on MRI! However, she does have a sinus infection and has been given an antibiotic. We have a follow up appt with Dr Hartford on Tuesday.
We are headed to Nashville for Duke Fest and to spend some time with Emily! I will update after our att on Tuesday!
Love to all,
Brandi
Friday, June 2, 2006 0:49 AM CDT
Day two~inpatient for a swollen eye
Madelyn is NPO and will have an MRI of her head done at 7:30 AM (OUCH!) They will be checking her sinus cavity as she has been having much drainage and the right eye specifically.
The eye is looking much better! The Opthamologist believes this to be some sort of post radiation flare up-Let me back up-We had 15 days of radiation to the orbits in March 2005. He says the tear ducts sometimes can become dry and the blood vessels to burst causing the redness and puffy eye? Something that I guess can happen months or years afterwards I just have not heard this from other parents, maybe someone could let us know if you have experienced this?
So since there is no abnormal white count or fever present he believes it NOT to be the Cellulitus she once had before!
We have played all day with Grandma Sherry and had a ball. We painted windows with Miss Jenny tonight and beaded necklaces with Mo (Jake's aunt). Benita, Mr Horace, Ms Monica, thanks for the visits! We will most likely be leaving after the MRI!!
Pray for a clear path.
In Christ, Brandi
*New pics added to photo album!
Thursday, June 1, 2006 10:47 AM CDT
Well our time off didn't last long-MADELYN IS INPATIENT. About 2:30PM yesterday Madelyn told dad her eye felt funny and needed a wash cloth on it-I walked in the door from running an errand and she had a wet wash cloth tied to her face with one of her silk sashes! LOL
I just thought it was another form of her "pretend play"! However, after waking from her nap just before Tyler and I were out the door for church, Madelyn came into the kitchen with her eye very matted and swollen. It seems to be all the same symptoms as once before when she had cellulitus. So after a call to the on call Dr we headed into the Med room where we started on an antibiotic, Cephapine and cultures.
So now we are on the second floor our number is 901-495-5260. Madelyn was told she was getting Nurse Jenny (one of her favs!) and she just flopped back on the bed and kicked her feet up way high and screamed with excitement! (Never mind that she had a skirt on!LOL)When we got to our room it was fully equipped with many nice surprises to start our fun! No wonder the girl loves to be inpatient! LOL
We are not hooked to fluids so she has been running loose on the floor with Miss Jenny and full of energy!! She is at the Nutrition center with another nurse for the third time!
I guess we're just going to get the antibiotic every 12 hours and they'll just watch her to see if it starts to help and maybe then will let us go [on good behavior of course!]
I will update as I know more!
Love, Brandi
Monday, May 29, 2006 11:15 PM CDT
Happy Memorial Day!
We have been keeping very busy and enjoying our time off from appts! Madelyn continues to feel really GOOD! Praise God! Our prayer is that God will continue to shine His light on us. That Madelyn will continue to grow into a normal healthy child and continue with her great quality of life and BEAT CANCER FOREVER!
Mylissa and I attended Ray Perry's funeral this past week. His service was beautiful. It was so spiritually uplifting and I felt a specail peace as I left. Ray will always remain in our hearts forever. Please pray for his mother Faye as she adjust to a new life.
We have been blessed to share our time with some friends at the hopsital. It is very hard to be away from St Jude’s when you have friends there~whether you have appts or not~or at least that’s how it’s been for us. We just ask that you pray a special prayer for Landon Pitre as he has been inpatient for over a week and has not eaten in two weeks. He loves animals and black and white cows for anyone who would like to send something special! But your prayers are most meaningful at this time!
Pray for Brent Nason who will be having an MRI in the morning as he has been experiencing much pain in his cheek. Pray that the tumors are DYING!
Also Jake Rayborn is very critical and still on the vent. He has been inpatient in ICU for over 40 DAYS! His mom and dad do just what Neal and I did when we were there as they work in shifts to be by their sons side. My heart just aches seeing him on that vent. Please keep Stacy, Don, the boys, Mo, Jin, Jin and family in your prayers.
Tyler was able to get a break with Jake’s brothers Hunter & Hayden as they all went to a Memphis Redbirds game Thursday night with Mark Horrocks and Mark’s father in law! They did some rock climbing, alittle basketball, baseball throwing…I know Tyler had such a great time! Thank you Mark for getting the boys out for a night of fun!
We went to a special graduation this weekend of SJ friend, Lindsay Harwell, www.caringbridge.org/ms/lindsayh CONGRATULATIONS LINDSAY!!! We wish you the best of luck at Ole Miss! We love you girl! Madelyn had so much fun helping unwrap her many gifts! Tyler also had a great time visiting and spending the night with Lindsays brother, Jordon and cousins as they swam in the pool and rode 4-wheelers then went to church with them the next morning!
Neal and I would like for you to say a prayer for his sister Amy, Matt and the kids. The kitchen in their home in Burns, TN was burned by a grease fire after church on Sunday. Matt had some minor burns to the leg and was treated and released from ER. The entire home is covered in black soot and they will be having to live away from their home until the entire home is cleaned and renovated.
Also pray for my brother, Chawn who has been battling stomach pains for two months now. He has had to stop working due to the pain. He has had many test run even to check for cancers. The plan is to remove his gallbladder but he has the added stress of having no insurance. Just pray that the right thing will be done for him.
Thank you all SOO MUCH for your LOVE & PRAYERS lifted for Madelyn and our family! Many Hugs to all of you! Thanks for checking in on us!!
Love to all, Brandi
Thursday, May 25, 2006 10:50 PM CDT
Hello to all,
We are back after 1000 miles! We had a great visit and dinner with Papa, Tracy, my sisters Ashley and Alina, brother-in-law Doug and nieces Emma, Gracie, Katie, Heather and nephew Logan in MO on Friday night! Madelyn was VERY excited to see them all!
On Saturday we took a quick trip to the St Louis Mall then to a 90th Birthday lunch for a friend of our families! Madelyn was able to see her friend Alexis who she hadn't seen since they visited us in Oct!
That evening we drove down to Huntsville, AL for the 1st Annual Habitat for Hope Golf tournament! What a great two days we had! On Sunday we ate breakfast at one of Maddie's fav restaurants, IHOP and then relaxed a bit by the hotel pool until the boys all went to the golf course for the day while Mylissa and I took the girls to the mall for some shopping and Ben & Jerry's! Thank you Mark, Mylissa and the Abrahams for your generous hospitality and love for our family!
The weather for the golf tournament was warm and breezy~just perfect! MAdelyn REALLY enjoyed riding the golf cart! It didn't matter who was driving~she was riding! Also playing in the sand as she and Kennedy Lewis had a fun time shoveling and covering her hands with it! We were pleaseantly surprised to know that our St Jude friend Lauren Lewis (www.caringbridge.org/visit/laurenlewis)lives in Athens which was exactly where the tourney took place! So we were so thrilled to be able to see them there and visit their home so the girls could play before heading home!! Thank you Benita for inviting us to your beautiful home!
Now we are back but we are always staying busy! It seems we just can't stay away from the kids at St Jude even though we don't technically have to be back until July. Please pray for all of them as they fight for their lives. There are a couple that I have specifically seen that need your prayers
Landon Pitre is inpatient. www.caringbridge.org/visit/landonpitre
Jake Rayborn is in ICU on a vent. www.caringbridge.org/la/jakeowen
PLease continue to pray for Madelyn to continue in good health and that she remain stable!
We also got to visit today with our very first SJ frined Tyler Jones! Thank you Tyler & Peyton for the outfit and PJ's!! We love you!!
Thank you for checking in on us! I will most likely update about once a week this month since we have something planned for every weekend in June!
Love to all,
Brandi
Thursday, May 25, 2006 10:50 PM CDT
Hello to all,
We are back after 1000 miles! We had a great visit and dinner with Papa, Tracy, my sisters Ashley and Alina, brother-in-law Doug and nieces Emma, Gracie, Katie, Heather and nephew Logan in MO on Friday night! Madelyn was VERY excited to see them all!
On Saturday we took a quick trip to the St Louis Mall then to a 90th Birthday lunch for a friend of our families! Madelyn was able to see her friend Alexis who she hadn't seen since they visited us in Oct!
That evening we drove down to Huntsville, AL for the 1st Annual Habitat for Hope Golf tournament! What a great two days we had! On Sunday we ate breakfast at one of Maddie's fav restaurants, IHOP and then relaxed a bit by the hotel pool until the boys all went to the golf course for the day while Mylissa and I took the girls to the mall for some shopping and Ben & Jerry's! Thank you Mark, Mylissa and the Abrahams for your generous hospitality and love for our family!
The weather for the golf tournament was warm and breezy~just perfect! MAdelyn REALLY enjoyed riding the golf cart! It didn't matter who was driving~she was riding! Also playing in the sand as she and Kennedy Lewis had a fun time shoveling and covering her hands with it! We were pleaseantly surprised to know that our St Jude friend Lauren Lewis (www.caringbridge.org/visit/laurenlewis)lives in Athens which was exactly where the tourney took place! So we were so thrilled to be able to see them there and visit their home so the girls could play before heading home!! Thank you Benita for inviting us to your beautiful home!
Now we are back but we are always staying busy! It seems we just can't stay away from the kids at St Jude even though we don't technically have to be back until July. Please pray for all of them as they fight for their lives. There are a couple that I have specifically seen that need your prayers
Landon Pitre is inpatient. www.caringbridge.org/visit/landonpitre
Jake Rayborn is in ICU on a vent. www.caringbridge.org/la/jakeowen
PLease continue to pray for Madelyn to continue in good health and that she remain stable!
We also got to visit today with our very first SJ frined Tyler Jones! Thank you Tyler & Peyton for the outfit and PJ's!! We love you!!
Thank you for checking in on us! I will most likely update about once a week this month since we have something planned for every weekend in June!
Love to all,
Brandi
Thursday, May 18, 2006 11:40 PM CDT
Hello there!
Madelyn is doing so well! She is full of energy! We attended Nash Stewart's fourth birtday party this past weekend! 
It was all army with cammo face painting, an obstacle course, pool party and all out fun! I think Madelyn was the only little girl invited besides his cousin! What an honor! Thanks Nash for being so sweet and loving to Madelyn! The following is an instant replay of the day!
We attended the Target Swamp Carnival on Wed where we always have a great time! Madelyn got three tattoos (a cupcake, a bunny and a gingerbread man) painted on her hands and arms, the kids received t-shirts, books, prizes and Madelyn made many crafts~her favorite thing to do at the parties!
We got to hang out with a new friend we've met recently who was up on the fourth floor very very sick at the same time as Madelyn back in January. She is from California, her and mom are here alone and her sister and brother are back home and have not seen each other in a long time. Please visit them at www.caringbridge.org/visit/stephaniewelker
Well we are heading to St Louis tomorrow afternoon and will end up in Huntsville/Athens, AL on Sunday! Please pray for safe travels!
Thanks for checking in on us! I will update when we return!
Love to all,
Brandi
Tuesday, May 16, 2006 0:21 AM CDT
Madelyn is doing very well~FEELING WONDERFUL! I had a sweet day yesterday! We all went to Huntingdon to visit family and see our moms! I received cards from the kids where Madelyn has learned to write her name! Seven letters is a BIG deal!! I'm really proud of her! Then we stopped by Sonic on our way home for ice cream treats! I'm so very blessed indeed, for the simple things in life I'm very thankful for!
MAdelyn, Tyler and Neal all had appts today! Madelyn had labs and clinic this morning and all was PERFECT! I mean there were NO H's or L's beside our lab numbers! Praise God for another good day! We still need to keep up with her fluid intake for a couple of weeks but she is getting her 40 oz in!
We do have a dental checkup on Wed along with PT! It was just really strange to hear Dr Furman tell us that he has scheduled our next clinic visit for July! He even mentioned that if all scans look good in July we'll see about removing her central line?! WHAT? Now that's crazy! One step at a time Dr Furman, I don't comprehend that! I'm comfortable with just having some time away at this point!HEHE He just said that the longer the line is in the greater chance for infection.
Tyler had a dental appt today. I had made his appt from the phonebook and ironically it was Dr Rowland's office in Collierville which is the same dentist at St Jude's who did Madelyn's surgery! I had made the appt a month ago before Madelyn had started going to him and had no idea he had his own practice as well! He had to have some tiny spots filled but more importantly had to have his very last baby tooth pulled that was becoming absessed. He is now officially without babyhood says the dentist! He gets alittle embarrassed when you talk about turning 13 but I think he's really excited about this year's birthday coming up in August! Last year we had his party inpatient so hopefully this year we'll be able to do BIG BASH for his big year!
We are planning a trip to St Louis this weekend for a family friends 90th Birthday Bash and then we are heading to Huntsville, AL for Habitat For Hope‘s 1st Annual Golf Tournament! Visit them at www.habitatforhope.org. We just love this organization as they support, serve, and care for families with cancer and other illnesses! If you are interested in volunteering, donating financially as this is a great need as they supprt, serve and care for families in need, or just want to become a prayer partner or maybe you'd like a prayer partner for your sick child just check out their site!
You'll be so blessed and your spirits lifted to see what stated as one loving family grow to multiple familes and a large support network of friends reach out to help others in need! Truly amazing what God can do!
We will let you know how the weekend goes! Take care and God Bless!
Love to all,
Brandi
Please remember to keep all the St Jude kids in your prayers.
PS SOme pics above are from Jake Roberts 5th Birthday Party. Thanks Jake for inviting us to your special day!! www.caringbridge.org/visit/jakeroberts
Friday, May 12, 2006 1:06 AM CDT
WE’RE GOING HOME….
Well we’ve had a long couple of weeks but all worth the while! Madelyn had her MIBG scan which is similar to a PET scan where they inject a radioactive material in her line then do a scan 24 hours later. It is specific only to Neuroblastoma patients. Anyway, she got to see Dr Piccazzi and Mr Horace so needless to say she received many hugs and kisses on the “BOYS ONLY” side of her cheek! Yes, just another thing to have to remember about our sweet lil angel is that you have to know which side you can kiss now!!LOL
After discussing the sedation issue that we had with Madelyn during last weeks MRI, it was confirmed that they (someone other than our normal anesthesia docs) had not given Madelyn her normal routine of sedation med AKA Ketamine or Special “K”! So she awoke in a much better, her normal woozie mood instead of grouchy and agitated this time! Madelyn cannot tolerate Fentinel, Morphine or Adavan due to itching, rash, hallucinations etc so this is why she gets Ketamine and Dilauted for pain instead!
We were invited for a special Country Cares event where I was able to speak on behalf of the hospital and talk about our journey which is never as easy as I think it’s going to be~Remembering back to those dark days and telling about it is very raw and full of emotions.
There have been so many mixed emotions on this journey. I don’t care how strong your faith is I don’t think facing death is ever an easy task to handle. It seems as though sometimes we try to understand WHY we have to walk this road but I can honestly say that there is not a second I would take back for the memories, the friendships and the wisdom and knowledge that comes with understanding the world of cancer. It teaches you more about living life to the fullest and never taking one day for granted that’s for sure!
At St Jude’s this is what our world is like. Unpredictable and overwhelming yet joyful and full of hope!. There are good days and bad. The pain is real. I can’t imagine a world without St Jude-they have given us HOPE and more TIME than we ever thought possible! I’m so proud of this hospital and all that it has done for Madelyn and just the peace of mind that comes from not EVER receiving a bill. I cannot imagine what Madelyn’s bill would be at this point~ Two years of 11 different chemos, 3 surgeries, a dental surgery, 15 days of radiation, a transplant, two antibody treatments, multiple hospital stays and medications and five times in ICU with three of those on a ventilator. The days are full of emotions here….Well, I didn’t mean to start rambling. I mean it doesn’t take a genius to know what we go through here huh! I will say that it is truly humbling when I look back and see the guestbook and the support we continue to receive and we are thankful for that! So on with a good day!
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We did get the results of the MIBG today and it is STABLE with NO CHANGE! Our MRI and CT showed SLIGHT IMPROVEMENT and last two Bone Marrows are CLEAR!! So what does Dr Furman think about all of this and the plan of action to take? Well, he feels very PLEASED and HAPPY with how she looks and feels! He thinks with all the problems Madelyn has had lately with the Colitis and lung issues and all the treatment she has had that we need to give her body some rest and healing time. AMEN to that!!
With starting even an oral chemo he feels that it will only bring her counts down and the side effects may even cause infection which could prove to be too severe at this time. So at this point we are going to do NOTHING except ENJOY the time away from the hospital! Then in about 8 weeks (Mid-July) we will come back and do scans!
So I have been wanting to say the words “WE’RE GOING HOME” for so long! Now let me just tell you, going home for us is our apt here in Memphis, 20 minutes from the hospital but I get to hear so many families come up to me with the biggest smiles and greatest news that scans are good and say to me, we’re going home!!!! Now, doesn’t that sound like great words to hear! I hope it makes your heart happy to hear this news as it does mine every time I hear another family tell me that! So though it’s not far from the hospital, I just want to SHOUT IT OUT TO THE TOP OF MY LUNGS, “WE’RE GOING HOME”!!!!!!!!!!!!!!!!!!!LOL
Now how do Neal and I feel about this? Well, it’s not without mixed emotions but we agree that she has been through so much and we would really like to see her enjoy some quality time AWAY from the hospital! It is VERY SCARY knowing that there is still tumor spots in her little body and we are not on treatment but we just have to keep PRAYING and BELIEVING that the treatment she has done thus far is destroying what is left! We have seen what the Lord can do through prayer!
Heb 4:16 says Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace in our time of need.
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Madelyn got her braces today from CFI a company St Jude uses for PT equipment but we now have to go and buy some wider shoes tomorrow since her new pink tennis shoes are not big enough for these braces! I guess we can handle ONE more shopping trip! (SMILE)
The only thing Dr Furman is worried about is Madelyn’s fluid intake. Now that she is off the fluids at night she needs to drink at least 40 oz of fluids (not caffeinated) per day! So for the next couple of weeks we are going to have to keep record of her intake in fear of quick dehydration again. She is eating and drinking well at this time! She loves her cheese & mayonnaise sandwiches, PB & J, oatmeal cookies, milk, apple juice and water are her favs right now!
I think that about wraps up our week! We look forward to many happy times playing this summer! The kids got their new bikes~Tyler a bright green (his fav color) and Madelyn a My Little Pony with training wheels! I will post pics this weekend!
In Christ,
Brandi
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Special Prayer request
Please pray for Ray Perry www.caringbridge.org/visit/rayperry and his Mom Faye as Ray will continue to be inpatient. He is very sick. His time on earth is limited at this point and they need your support. His love for Jesus shines bright as I’ve been told of his heroic speech at the Nurses Week Seminar that touched the hearts of everyone! He is loved by all that know him at St Jude!
Pray for Landon Pitre.
www.caringbridge.org/visit/landonpitre Landon is a four year old NB patient that we have come to know after Hurricane Katrina swept through and caused him to now be part of our St Jude family! Landon was the only patient after Madelyn (here at SJ) to start receiving the hu14:18 IL-2 antibody treatments . He was supposed to start his fourth round on Tuesday but after scanning what was thought to be just a bruised eye or fungus is confirmed to be Neuroblastoma growing and then a bone marrow biopsy shows new growth there as well. He will get results of his MRI on Friday. His mom and grandmother are here at the present and they have received nothing but bad news all week. I know they could really use some words of encouragement at this time.
Pray for Ben Bratten who is inpatient with fever. Pray for the chemo to be effective on the tumor and for his parents to have a special peace as they look toward a third transplant for Ben.
Pray for Jake Rayborn la/jakeowen and his family as they are on the fourth floor (transplant) with GVHD. He is very sick and Stacy, Don and the family are very tired!
Thursday, May 4, 2006 10:44 PM CDT
We were happy to visit another church, Sycamore View here in Memphis this weekend and the people there just stole our hearts! We have been praying about this for a long time that we would find someplace just right for us and we just hope and continue to pray this will be the one! For any of our new friends please sign our guestbook at the bottom of the page when you can! We love to hear from everyone!!
ALSO Madelyn's dental surgery on Friday went fine! They actually had to fix 14 out of 20 teeth when they got in there! WOW that chemo is some tough stuff! Her top four teeth are white enamel with silver ont he back side ther're alittle bigger than her normal teeth and whiter. There are some silver caps in the back of the mouth and white fillings in other places-UGGHH sounds like a mouth full of mess doesn't it- I'm not thrilled about silver caps but this will be much safer for her and she is still just as beautiful so I dare not say what I just said in front of her! She looks at her new teeth in the mirror with the proudest look on her face!! She is happy and not in any pain~that's what counts!! Thank you Lord!
Music to our ears…
Well I knew it might be a good day today when Madelyn woke up in a most cheerful mood she even spit her paci out in my hand but I‘ll get to more on that in a bit! On the way to St Jude’s today we listened to the new HOPE CD received from Habitat for Hope. Even the kids really got into it as Tyler took off his earphones from watching his TV and listened to the lyrics and once I skipped a chorus part to the next song and Madelyn called me on it saying “hey, I was listening to dat song!” LOL Oh excuuuuse me!
Thank you Habitat for Hope for bringing peace and joy to our hearts with these powerful lyrics!
Madelyn also made up a new game “Marshmallow”! For every time you see a white car! You can imagine how many marshmallows we found! Our game goes like this-red cars are apples or cherry-berries, blue cars are blueberries, green cars are lettuce and yellow cars are Chiquita bananas! You'll never think of cars the same now!LOL
Today was just a really great day as I guess we all had just the right amount of sleep and appts weren’t too terribly early! HEHE Our first appt wasn’t until 11:30! Dad has a new position at work where he works from 5AM to 1PM so his day is about done before ours really gets started!!HEHE
Madelyn had PT where she was very active and has impressed Miss Kristen enough that we will be going once a month after next week! That’s when Madelyn will get her braces on her legs that she will wear at scheduled times daily to hopefully get her standing back on her heels! I hope this is going to be time well spent rather than money well wasted for St Jude!
Our days in D Clinic are usually filled with bouts of temper when Dr Furman walks in and first thing tries taking our most prized possessions (and that is plural), the paci! But that wasn’t the case today! I am just on pins and needles knowing that I am going to have a screaming child if I don’t go tell them NOT to mention the word PACI as we have been really working on this issue! However, this time he walked in and the first thing Madelyn says with a SHOUT and a bootie shake, “I DON’T HAVE MY PACI!!” Well I could’ve fell out! I guess she told all of us!! We’ve been feeling like this is the BEST time with her feeling so well to try and nip this paci thingy in the bud! I mean she is almost four and half ! LOL I know, I know she also has cancer (oh I HATE that word) and believe me it’s just as hard on me! Anyway, I think doing this is going to be good for many reasons such as infection control, her teeth and her speech! I don’t know who I am trying to convince more, her or myself! LOL Like I said, it is just as hard for me but this time I have not give in and she is now handing me the paci in the morning and only gets it at the present when she is going to sleep! Please pray that this is not stressful on either of us!
WELL WE HAVE SOME REALLY BIG IMPORTANT NEWS THAT I THINK YOU WILL REST BETTER KNOWING!!!!!!!!!!!!!!
MADELYN’S BONE MARROW IS CLEAR FOR THE SECOND CONSECUTIVE TIME!!!!
YEAH!!!!!!!NOW FOR THE HAPPY DANCE!!!!!!!!!!!!!!!!!!!!!!!!!!!
WHERE IS TONYA NASON’S HAPPY FACE DANCER WHEN YOU NEED ONE!!!!LOL
Well, we are just rejoicing in the wonderful news of the day and thankful for the blessing! There is still really no plan as of now as we need to get the MIBG done which will be next Wednesday. Madelyn is scheduled for Dental procedures bright and early in the morning! Please pray for her to tolerate the sedation better than last Thursday’s as she had an awful time after waking up.
Please keep lifting the Rayborns and Ray Perry in prayer as they are still inpatient.
Love Brandi
Tuesday, May 2, 2006 1:46 PM CDT
Results Prove GOD IS GOOD….
Well the yard sale this weekend went far better than expected on Friday! We felt so blessed and glad we were able to get this done this weekend! Now we just have to
S t r e t c h this as far as we can!! However, Tyler made enough money to buy him a bike that he’s been wanting and now Madelyn wants one too-with training wheels! The kids had the Lemonade stand set up and sold out of Lemonade and also sold almost two dozen doughnuts for Habitat for Hope! Since the forecast called for rain on Saturday we opted not to have it then so we packed it up and took what was left to storage till next time!!
Maddie is feeling GREAT!! We headed to Burns, TN this weekend for a couple of days with Uncle Matt and Aunt Amy, Spencer, Reilly and Cade! We all had so much fun playing many games and pigging out! The big boys, Tyler and Spencer, had just bugged the heck out of us wanting to swim in the pool so finally yesterday we just told them to get in well with water just over 60 degrees they lasted about 5 minutes!! Then we all had a water gun war which ended with Maddie finding a cup which she kept filling with water and drowning the boys with!! LOL They weren’t allowed to squirt her so I think she had the upper hand!!
We were able to attend church with them as well at the Burns Church of Christ. I think they were surprised to see how well Madelyn was looking and feeling and we were very happy to be able to attend and see many of the folks there that we haven’t seen in awhile! They always make us feel so welcomed there!!
THE RESULTS ARE IN:
We received the results of the CT and MRI! Maddie has two spots left after initial treatment from 2004: the primary tumor in the abdomen and the small tumor around the left eye-they APPEAR slightly IMPROVED!! We have been overjoyed and praising God for being so good to us! Dr Furman commented that he’s not sure what is helping it IMPROVE as it’s been 4 months since the anti-body! I KNOW THOUGH!! Can you say the power of prayer! That’s God!
We are so blessed to have our little girl feeling so good-I have been feeling like things are finally getting back to NORMAL! I look forward to her attending school, me going back to work, having our own home again, and staying away from the hospital as much as possible! We can only pray that the scans continue to show improvement!!
We will have a dental appt on Wednesday morning, appts all day on Thursday including, PT, speech, and D clinic which we will get results of the Bone marrow aspirates and then on Friday we are scheduled for dental surgery where Madelyn will be getting 10 teeth filled! I had just forgotten to mention this before as the appt kept getting rescheduled due to the last two months of Colitis and Cdiff issues! Please pray for a pain-FREE weekend after surgery as we have a very special birthday party of Jake Roberts to attend on Sunday!!
We are headed to the zoo and pick out bikes! I will update again Thursday evening!
Love to all,
Brandi
Thursday, April 27, 2006 0:45 AM CDT
NEW PICS IN PHOTO ALBUM!!
Things are going well! I must say it has been such an uplifting feeling to watch Madelyn looking and feeling so well! She is always on GO! We have been to the park twice this past week and she just plays so hard! Her favorite thing to do is pretend she is Cinderella and she kicks off her shoe and I pretend to try the shoe on all the kids at the playground…! HEHE
The only medication she is on is Zertec for her sinus/allergy symptoms and it seems to be really helping her! The runny nose has been gone for some time now!! All that pollen! UGHHH!
She is also being hooked up every night to a 12 hour bag of fluids to keep her well hydrated during this week as we are doing her routine testing then they will take her off and hopefully she will tolerate being without it this time!
So here is a recap and the plan for now!
We had MRI on Friday, we had CT on Monday and Thursday AM we will have bone marrow aspirates and biopsy and Friday Madelyn will have her MIBG scan. We hope to get some results of the MRI and CT during Thursday’s clinic visit and then we’ll get the other results next week!
After the scans are done we will be sitting down with Dr Furman and discuss our options which for now is DO NOTHING and have scans done again in three months or start on an oral chemo such as Irrinotecan or Topotecan. I will be honest, it is VERY HARD to now have to start making decisions like these for your child. The first year was very cut and dry so to speak with a protocol and our Dr just saying this is the protocol for NB- chemo, surgery, transplant, radiation. Then came the second year in 2005 that we as parents had to make decisions regarding more chemo on a Phase 1 study when her cancer was considered refractory after the protocol did not put Madelyn into remission or NED. Then by the end of 2005 we were so excited when the news came that Madelyn would be able to participate in the hu14:18IL-2 antibody therapy which was just in the making when we started treatment. However, After being on the vent twice in 04 it made her lungs weak with very little reserve so after completing just two rounds of the antibody she was again put on the vent for a third time for 13 days in January 2006. Madelyn is such a miracle to all of us! She has overcome so many obstacles and just talking about treatment just breaks my heart. To look at her you would NEVER know that she has cancer. Her activity level is unbelievable~she runs circles around us all with her energy level!
I know we have to do something and we are not just going to wait for the beast to rage! I gain confidence every time I pick up a St Jude newsletter with a new hypothesis on NB research! Of course, as always we just put our trust and faith in the Lord and pray for her earthly healing and we are FULLY RELYING ON GOD for guidance and the best decisions to be made. We just ask that you please join us in prayer for Madelyn this week as we move through this week of scans and decisions. We love our prayer warriors! Please know that we are reading your messages and we thank you so much !
We have decided not to attend this years Fishin Galore in Louisiana. There are numerous reasons. Lets see the DUST there is high due to the 4 wheelers and mobile units on the premises which we felt wasn’t safe for Maddie’s lung issues and what about those GAS PRICES! UGHHH!
So now we’re just focusing on getting this yard sale behind us and maybe we’ll be able to do a fun trip in the near future! We’re shooting for this weekend in Huntingdon right across the street from Wal-Mart so for those in the area you can’t miss it!! HEHE There is a chance for rain on Saturday so hopefully all will be sold on Friday!!
We are also planning to visit Aunt Amy and Uncle Matt in Burns, TN on Saturday night and attend church with them on Sunday.
Well, I have to get some sleep we have a very long day ahead of us!
Love to all,
Brandi
Monday, April 24, 2006 0:30 AM CDT
Bippity Boppity Boo, a wish comes true…
Hello to all! We have some really special, BIG exciting news that we want to share but I’ll get to that in a bit!
Madelyn has been doing super since getting released from the inpatient unit last Tuesday! Of course we had to lay off the yummy apple juice she has been craving due to the diarrhea but things are much better in that department and still nothing has grown from any cultures so I’d say she is back to pretty much her normal eating and drinking! She is doing VERY well with her more nutritious eating ! She ask me tonight if she could have a PB & jelly sandwich and after I said of course, she ask me if that was “healthy” for her body?!!
She loves to get my enthusiastic approval when she eats well so she loves to ask! We’ve been working hard on offering better food choices when we have to eat out but she still craves her cheeseburger -PLAIN! She now says, can I have one every once in awhile PLEASE?LOL
We had our MRI on Friday, the first of all her routine testing coming up this week. We go in Monday, tomorrow for CT with contrast ( which means she has to drink 8oz? Of clear fluids with a liquid contrast added, three times before being scanned) then she will have her pulmonary lung testing as well! We are praying that she is old enough or will be able to do this as we really need to know a baseline of how her lungs are doing.
We are off on Tues and Wed so far and will be heading to Huntingdon as we did not get to have the planned sale this weekend due to our inpatient stay and so forth so we’re still preparing for that! Dad built a Lemonade Stand for the kids to sell from and they are so excited about doing that!! We don’t know how well Lemonade sells in Huntingdon but you can bet they will be out there ready to sell when we do have the sale!! I will keep you posted for those in the area so hopefully you can stop by and see us and Madelyn!!
We have bone marrow aspirates and biopsy on Thursday and MIBG scan scheduled for next week. Both of these require sedation as did her MRI on Friday. She loves it! This used to be some of our toughest, most tearful days for Neal and I over the first year but it is much easier now that she loves the sleepy medicine and loves her sedation team!!! Mr Horace and Dr Piccazzi (Mr. Georgie to Madelyn!) just love her to pieces and she just gives them the biggest hugs when she sees them!!
I noticed that I left out the pics of the inpatient floor in my last journal so I will now include them! The paintings are just awesome! They represent the many attractions in Memphis!
So for our REALLY SPECIAL news! Madelyn was able to have another dream fulfilled last night by meeting her FAVORITE singer
Bo Bice ! >
Madelyn's Dream Come True!!!!
Our family along with Mark and Mylissa Horrocks went to the Southaven Fair where Bo performed for nearly two hours!
Tyler with his Bo Bice Rocks sign and Madelyn and I headed front center to watch the show while the others stayed back to video and snap pics!
The look on Madelyn’s face as she watched him was priceless! She would just shake her hips on my shoulders with her hands in the air clapping! At one point she saw many in the crowd with their camera phones up and she ask for mine (which is not a camera phone by the way) opened it up and thought she was big holding it up at him!
Poor Tyler had his first experience and hopefully last of having a drunk guy fall and spill beer down his arm and on his BO Bice shirt! UUGGGHH! Other than that, he loved the concert and now says he’s officially a Bo FAN!!
Thanks to
Mr. Mark , who talked to Bo’s sound mgr, was able to set Madelyn and all of us up backstage after the concert with a meet and greet!! It was so late almost 12:30am by the time we got to see him I was afraid it wouldn’t happen (Madelyn was getting very tired) but then Bo’s mother, actually came to meet us and took us to his tour bus!
Madelyn was pretty speechless! She would whisper every now and then for me to tell him something! Like how she cried when he finished second on AI! LOL All I can say is what an incredible night and it is just priceless getting to have your child’s biggest wishes fulfilled! He seemed very sincere and was EXTREMELY thankful to his fans!
Just in case Bo is with us tonight we would like to say THANK YOU so much for the time spent meeting our family and know that you have made a huge impact on a 4 year old fan who came home and insisted on wearing her newly signed Bo Bice T shirt to bed! The night will be in our hearts forever!
We are so very thrilled and thankful to the Lord above who allowed the opportunity and perfect timing of this event!
So there you have it! What a night it was and a very long one but well worth the wait!!
I am waiting on pics from our paparazzi, AKA Mr. Mark and I’ll post them soon!!
We were so happy to visit and fellowship with the Horrocks’ this week and meet several new families! We finally got to meet Dawn and Todd Pierce who’s sonShae was a patient at St Jude in 2004. We are so blessed by our network of friends that we have met on our life’s journey!
Love to all
Brandi
PS Our SJ friend Ben Bratten had a CT done this past week and the tumor around his aorta looks “much improved!” Praise God for little wins!!
also keep praying for Jake Rayborn and his family as they keep facing obstacles. Stacy it was really great getting some girl talk in during dinner the other night!
I want to end by asking for a special prayer request for a special young boy that I have had the opportunity to be a prayer partner for through Habitat for Hope. His name isRay Perry he has the same diagnosis as Madelyn and has been fighting for the past 3 years at St Jude. He is now having emergency radiation done and the chemo are no longer being effective. Please visit his site and offer encouragement for Ray and his mother Faye. 
even the floors have character!
Monday, April 17, 2006 9:20 PM CDT
Wednesday April 19th, 2006
UPDATE
This is Mark Horrocks (Habitat for Hope) updating for the Beamon crew. Madelyn is out of the hospital and is doing great. The family took a quick trip up to Huntington to get ready for their big yard sale this weekend. Madelyn's labs were good the other day and they have some apointments at the hospital tomorrow.
Please keep the prayers coming for Madelyn and family.
God Bless,
Mark
WOW what a difference alittle water makes!!
After being admitted on Easter Sunday and starting the fluids, Madelyn woke this morning wide eyed and bushy tailed!!! She has been so full of energy today!! First thing she wanted to do is go to the play room! For those who have never been to our wonderful facility they have two play rooms on the second floor, the inpatient floor. One is in the shape of a steam ship and the other a train! Cool huh! I included some pics of the walls and play area below that we have taken sometime over the last two years!
I realized I haven't updated after our visit last Thursday which may have something to do with our trip inpatient now...Madelyn was looking and feeling great on Thursday so they decided to stop the 16 hour TPN that night after her last bag was finished so I ran it at 14 hours and we were excited to be done with that! So then on Friday we headed back to Huntingdon and Madelyn played her little heart out with the boys inside and out! When outside she had a sippy with ice water she would drink from and was eating and drinking like normal during mealtimes and even was asking for water more often but still it was not enough...she was dehydrated. WOW! I was just surprised to see how sick literally overnight my girl had gotten. I was so scared to be honest that it was the nasty fungal infection back in her lungs again. Never did I think of dehydration-she did not have any diarreah and she was urinating throughout the day. Of course the relief was instant the moment the Xray came back CLEAR! We praise God for that moment and thankfully she is getting better!! They do have her on Vancomycin and Merepenem (strong antibiotics) because of the fever she ran on Sunday evening but she has not run one since then!
We are suppossed to be released on Tuesday morning but after she went potty tonight with a very loose stool it may be questionable now. She has also said tonight that her belly is hurting and she screamed saying that it burned when going poo poo so we'll just have to wait and PRAY that she does not culture for the CDiff!
Tyler and dad have been here all day and we have been able to take Madelyn down in a wheel chair (just because she loves to ride in them)to the cafeteria and eat together as a family and then tonight for dinner she rode down in a wagon and ended up falling asleep!
She is eating little right now-cherry poptarts is about it and apple juice is her new favorite drink! We had to go to Wal-Mart at 10 PM the other night cause she wanted some apple juice weally bad!
CAUTION SECOND FLOOR PATIENTS:
The police are in full force tonight! Madelyn and I went to the nutrition center for a snack-hem hem, poptart and apple juice-after returning to our room and getting the bedside table ready I went to raise the back of the bed and the remote was unpluged but where in the world do you plug this funny lookin cable into? After calling in the nurse and her not solving the problem she called for back up...When back up arrived in came two more nurses!! HEHE Now I just had to laugh and joke that it was just like being pulled over for a minor traffic violation and before you know it you've got three or more cops in full force behind you!! LOL It was quite funny!!
So the bed DID get fixed thanks to our wonderful staff of supportive nurses!! They are here to fix ANY problem even the little ones!!
Of course, there is always something going on when Madelyn is around! I think she's always the last one to sleep on the floor and we always have some nurse in our room playing a game with us or she's fixing their hair! I'm telling you this girl LOVES to be inpatient and who could blame her with all this attention!LOL
Madelyn finally got her little hands on her Easter basket today! We opened her Polly Pocket girls and pretended the basket was a swimming pool! She opened her chocolate Carebear left for her but she has never been one to like chocolate or candy for that matter!
She has been wearing and showing off her precious new bunny slippers she received from new friends in Memphis, Hayden and Sawyer!
Madelyn would like to thank the special friends who have sent Easter goodies for her and Tyler!
Well I will sign off for now and I'll be updating again tomorrow!
Did I mention that we had to change rooms tonight? They needed the other room for another patient who needed a monitor which I guess is only in certain rooms on this floor but it was all for the best-we now have one of the two suites on the south side of the floor! This room is so much bigger and the view of outside is beautiful withthe big double windows to look out! Heck, now we might as well stay a few more days!HEHEHE Just kidding! Our new number to this room is 495-5272. OH! And we can now use cell phones in the hospital (except for ICU) so you may get us on that as well!
Love to all,
Brandi
Monday, April 17, 2006 4:09 PM CDT
Madelyn is doing very well today. Her blood chemistry is much better today. She was very dehydrated yesterday. She has been recieving fluids overnight and hopefully they will be letting us go home tommorrow.
Sunday, April 16, 2006 2:27 PM CDT
UPDATE 5:00PM:Well Madelyn has developed a fever. Madelyn is dehydrated and has some type of infection according to her blood work. They have given her a fluid bolus and done blood work again. This time it was better and also her chest x-ray has come back ok. The doctors have decided that we will become new residents of the second floor for the time being. This is all we know for now and we will update when there is more to report. Please continue to pray that this passes quickly and Madelyn is back to playing and being herself.
neal
Just a quick update to let you know what's going on with our girl and ask for prayer:
Just so you know Madelyn has really been enjoying some REALLY GREAT days lately! We have been in Huntingdon preparing for a big yard sale we're hoping to have soon and she has been enjoying time outside in the big yard with her Barbie jeep and swinging on the swingset but mostly laughing and playing with Tyler and their cousins Spencer, Reilly & Cade!!! She loves them so much!
OK so then this morning about 6am she wakes up telling daddy the sun's up and it's time to go hunt eggs! But soon she was back to sleep and we woke her about 7:30 to go downstairs to see what the Easter Bunny had brought...she was not at all interested as she just laid in daddy's lap...then wanted to lay on the couch and went back to sleep.
As we were getting ready for church she started throwing up and that's when we knew she wasn't well. yesterday, she was very clingy to me and wanted to be held and rocked most all day. She complained that her belly hurt twice but none today.
So as the rest of the family headed to church we loaded up and left for Memphis. On our way as we were heading toward Jackson we tried waking her several times with no response-is she just that tired or could it be the fungal thing coming back? We didn't want to take any chances with a two hour trip-(her heart rate was about 60 bpm)So we called an ambulance to meet us at the exit to get her assessed and all was well but her HR ras about 155 bpm. She was awake by this time and seemed well enough now to keep heading to St Jude! We really were trying to avoid taking her into another hospital, doc etc that has never seen her but we had to be sure her O2 and stats were ok before we could breathe a sigh to go on regardless.
Ok so we are now at St Jude and she is feeling alittle better. They have done labs but not cultures since she has not had a fever, they have checked her Co2 levels (blood gases) due to her having lung issues in the past, they have hooked her to fluids through her line and given Ondansitron for nausea. She wanted to be held by me and then wanted down to "see if she could walk", she said! So with her Easter dress still on, Mrs Dale got her some pink and green "Easter Footies" to wear!
Well I have used all the time allotted on the St Jude computer so I will let you know how things go from here!
Please pray for no fevers as she is on the verge at 37.3. Pray that whatever may be ailing her little body that she will recover quickly and pray for her lungs to be restored.
Hope everyone is having a great Easter and maybe we'll be back home soon so she can enjoy her basket full of goodies!!
Love to all,
Brandi
Saturday, April 8, 2006 10:02 AM CDT
Thurs April 13~URGENT PRAYER REQUEST: Please keep the Rayborn family in your prayers as Jake has brain surgery this AM.
The power of friendship….
Where does the time go…I know it's been awhile since an update but just to reassure you, things are going well with the Beamon family!! Madelyn still continues to amaze us all with all her WONDER and ENERGY! Boy, does she have the energy that I wish I had! LOL She is feeling great and still continues with the daily name changes! She has been baby, chipmunk & Aniston Claire this week! Who is Aniston Claire you might ask? Well this was almost her name until she was finally named Madelyn Paige and now that she knows this every baby doll is now this name and she says it will be the name of her baby sister one day! HEHE She is so funny!
She is especially into doing “schoolwork” for the past several weeks now! “Like Tyler” she always says! We go to the store now and she’s picking out workbooks! So we have went through the Pre K and are now on the K books! She loves those dot to dot and mazes too! When she was less than two she learned her colors right away then her numbers and recognition. This past week she has been using her standup dry erase board with magnetic letters and wants me to play ‘teacher’ so I put up a magnetic letter then write the capital letter and little letter and she writes the same letter on paper! She loves this-then she says her ABC’s as she goes along! It was quite interesting how she kept wanting to sing ABC-QRS though we spent much time on D and E cause they sound alike and E and F cause they look alike and F only has “two legs stickin out”, she said! LOL She found it interesting that some letters such as C, K, M,O, P, S, U, V, W, X, and Z both big and little look the same! She would pause and say, “huh, I didn’t know those were the same!”
We had labs yesterday where Madelyn is up to a WHOOPING 16.3 Kg or 36 POUNDS! WOW! And to think she started at 13.5kg (30 lbs)and got down at one point to 10.5 (23 lbs)! For the FIRST time she is now over that 16kg mark!! Her little 3T Capri’s and clothes from last year are now way too tight! Even her many pairs of flip flops are too tight! It’s just funny that even last year wearing 3T’s these were some of the same clothes from when she was two! So for the first time in two years she has outgrown her clothes! Boy, don’t we get excited over the littlest things anymore! LOL
We had PT where we are trying to get Madelyn to walk on her heels and talked about her needing leg braces that will fit inside her shoes. They will fit her for them in two weeks. I don’t guess that she will like this very much but apparently from what I’ve been told by walking on the tip toes much, the tendon in the back ankle can shorten and be permanent so we hope this will not be too big of an issue for her! (Where is Mo? We need your PT expertise!)
This time of year really gets to Madelyn’s allergies so they are putting her on some Zertec.
We are also getting the Lactinex which is a powder form of Acidophilus that we can sprinkle in Madelyn’s food! This will help even out the good and bad bacteria in the gut while she is on the antibiotic that she is still continuing to take!
We were able to head to Carroll Co this past week in time for Meetings at Malboro Chruch of Christ in Bruceton, TN. We were so happy to be able to attend! Madelyn had a busy time sitting with friend Karissa who is also a member there. Karissa brought Madelyn a very girly gold sequin purse-you know those very flashy big round sequin ones! Madelyn has always had an eye for flashy, sparkly things! It was filled with what else but lotion, lip gloss and all those little things girls loves! Thanks Karissa!
One of the nights, while sitting with dad she wanted to know where in the hymn book was ‘Jesus Loves Me’? After showing her I thought she was going to belt out the lyrics but decided to hum it instead!HEHE
We spent one day doing nothing but sleeping in and then going to one of the MANY parks in Huntingdon for a picnic and pictures of the kids on a wagon filled with huge Easter eggs! ABOVE PHOTO! We took Madelyn’s Barbie jeep and she had the best time riding all over the park! While there we got to see Neal’s cousin, Kara who we were so thrilled to see! We have got to get together with those five girls of yours next time!! We love you guys and miss you too!
We are now back home in Memphis and got to go on a special day trip to the zoo with our sweet friend
Ryan Breedlove and his mommy! He is the sweetest, most carefree child! Madelyn wanted a double stroller for the two of them to sit in together! I have to tell you this sweet story of what I like to call a true friend-We were taking a pic of the two kids (Tyler went with us too but not in this pic) anyway, as we were trying to get Ryan to look and put his little hand down from his eye (he has severe sensitivity issues toward the sunlight) well Madelyn puts on her glasses too and puts one hand over her eye just like Ryan for the pic! It was just one of those precious moments!
We are also anticipating the arrival of many of our friends who have lost loved ones as this weekend at St Jude’s is Remembrance Day. We are so happy to see the many families though it is painful trying to understand their loss. My heart just aches for all those who have lost their babies. As we struggle with our own daughter’s battle with cancer I am amazed at what their little bodies can withstand and also see the toll that it takes on them as well. I am at awe at what I’ve learned about the power of God, survival, Hope, and the power of friendships. I’m sure much much more has been learned that I just can’t put into words right now. The St Jude families we have come to know feel so much like the love of a close knit family! We always look forward to seeing and spending time with them! Please keep these special families in your prayers.
Well I need to go for now! Thanks for checking in on us and please keep Madelyn in your prayers that she continue to stay STABLE as we have not been on ANY treatment since January!
We do not have labs or clinic again until next Thursday! I will try and update before then!!
Love to all,
Brandi
PS Please visit Madelyn’s HOPE site for information on getting magnets! We thank the many supporters who have rallied behind us throughout our journey! We love you guys and believe in the power of prayer!
FUN FACT: The song playing is by Jessica Andrews who is also from Huntingdon!
NEW PHOTO ALBUM ADDED ABOVE!
And pics of Maddie and Jake Roberts from our day at the park!
Monday, April 3, 2006 7:24 AM CDT
Spring fun and flip flops...
WOW! All this tornado weather… I hope everyone was safe!
I guess I will start off by saying Madelyn is doing WONDERFUL! And we are so very thankful for that!! Since being at St Jude’s last Wednesday we have been enjoying some fun times! Let’s see first…she has not complained of ANY pains, her stools are back to normal, her bottom sore is still needing ointment but is healing, she is still taking the oral Vancomycin for the CDIFF for about 5 more days, she is on 24 hour TPN that we hook to her central line nightly and she is in the best of spirits! I think that about sums it up but I can’t leave you with just that you have to sit through the extended version too!! LOL
On Thursday, Neal took Tyler to his morning TCAP testing while Maddie and I headed to St Jude just in time to see our sweet St Jude sis, Miss Brooklyn waiting out front for the bus that takes her to the airport. The girls had such a great time and picked up just where they left off back in December! They were so cute picking flowers from the St Jude lawn-I think they picked one for everyone they knew and Maddie even suggested sending one back with Brooklyn for her mommy! (I hope you like wilted flowers Danielle!)
It just so happened that Madelyn found her Strawberry Shortcake necklaces that came with the figurine that went on her B-day cake-it was a broken heart that read Beary Best Friends and she gave one half to Brooklyn and she wears the other! It is amazing how this journey has us connected to so many from so many places around the world! Seeing her really made me miss them much more knowing she was getting on a plane and heading alllllllll the waaaaaay back to Oregon! Needless to say Madelyn was not happy about leaving but she did give hugs and kept yelling, ‘Bye, Brooklyn’ as long as she could! We’ll be looking forward to seeing you again in June!! Most importantly, her scans were good! Praise!
OH! And this was her first day it was warm enough to wear her FLIP FLOPS again! She was soooo excited!
Then that night I headed to Carroll Co for a night of driving school-yeah, well it happens to the best of us sometimes! (It was for Speeding) So Madelyn got to spend some time with Grandma Sherry playing Barbie’s and drawing pictures of herself! Madelyn wanted to spend the night so we got on our jimmies, hooked up the TPN and snuggled in the bed and watched Super Babies! Madelyn thought that was so funny! Thanks mom for entertaining while I was learning to drive!
Tyler is feeling much better! Neal ended up getting a cold too and is better now also! I am so thankful Maddie and I did not end up with it! Praise! Just a common cold can be so much worse for a child with a compromised immune system! It was NO kisses for them for awhile!HEHE We went for a drive Friday night to get custard and latte’s at Sheridan’s but before we got there Maddie was sound asleep and there was no waking her! I even was able to get her out of the car and into bed with no waking up! I was able to work on my pictures before going to bed myself! I was in the process of labeling them all with dates and I am done with that part now!! I also have them divided into years-OH MY how we have taken 100 times more pictures AFTER diagnosis than before! Our 2004 and 2005 stack just towers over the rest of the years! LOL
Saturday was pretty eventful, we met daddy for a picnic lunch at the local park and what a great day it was! We got to see our St Jude buddy
Jake Roberts who came to play with us! Those two have so much fun when they get together! They went through tunnels and raced down a side by side slide and even compared belly scars after hearing his mom Gina and I talking about them! Maddie loved the Monkey bars most of all! (She just told me to write that! HEHE) Then we also met a new friend, Isa (sp) she was two and it just so happens that her mom donates platelets often at St Jude’s! We are very thankful to meet volunteer donors as we have needed and used our share of blood and platelets here at St Jude! Thank you so much!!
Then after driving to our favorite new carwash on Germantown Pkway we see that they are having their Grand Opening--everyone gets a FREE carwash and ALL donations benefit ST JUDE!!! Of course we had to let them know about our sweet girl and how thankful we were for them doing this!!
Then it was off to party with the Pearlman’s who are friends of ours here in Memphis! They are in the process of building their dream home in Arlington! We visited while roasting hotdogs and eating s’mores! YUM! Madelyn had so much fun riding the 4-wheeler with Joey, you could hear her squealing with laughter down the road! OH! And for a potty it was a bucket with a toilet seat--Madelyn really thought that was cool so she went like 3 times just to sit on the bucket! (don’t worry as soon as we were home it was bath and dressing changes! HEHE)
Sunday afternoon we took Madelyn’s Barbie jeep to the car wash where she got to wash her car for the first time this season and then came back to the apt for a spin! She thought that was really cool and wants to “do it again sometime, she said!”
Well, let’s see we have labs and clinic on Monday where I am going to request the Acidolfilous since we are on the antibiotics! I really think it will help so much but we’ll see what they say! Since she is doing so well I am hoping we’ll be off for a few days before going back on Thursday!
Thanks for checking in on us and our prayer is that the Lord please restore Maddie’s lungs and organs while strengthening her! That she tolerate her PT exercises so that the muscle will heal correctly (she is still wanting to walk on her tippy toes) Also, pray that the cancer cells stay away from Madelyn forever!
Also pray for our St Jude kids as well esp Jake Raborn as he recovers from the recent brain surgery. Pray for the Breedloves as they are searching for the right sunglasses for Ryan to tolerate the sunshine! He is so very sensitive to the light right now but I know that God will shine upon them soon!
I will update soon with clinic visit!
Love to all,
Brandi
PS Here's a sneak peak at those polor bears we went to see the other day and other pics!
Look at that dark hair! If you an see it from the bow that is!!HEHE
More pics to come!
Monday, March 27, 2006 10:40 PM CST
UPDATE: Tues, March 28 11:00PM
Just wanted to do a quick update before going to bed. We've had a busy fun-filled day! First we had labs and clinic. Madelyn's white count is DOWN from 12 to 4! That's a good thing! So I'm assuming her ANC is back down better as well since they usually go hand in hand but I didn't receive a copy of labs so that I'm not real sure of!
She is feeling great! They were able to feel of her tummy without any pains! Praise! She has not complained of any belly pains either!
She is still having the loose stools but only twice today! They believe that the Vancomycin is working well! We hooked her up to the 24 hour TPN tonight so she is getting some better nutrition in her again! (Last night remember she was only given some saline with glucose) And let me add that this morning in clinic she let Mrs Sandy know how she felt about being hungry last night! HEHE She said she didn't sleep "all night" cause she was SO HUNGRY! Well she did sleep after about 1AM!
Tonight she was allowed to have water and soft food like mash potatoes and banana which we were told many times not to forget to stop at the store for on our way home!!HEHE
A very kind CB supporter clued me in with an email about this CDIFF and that her Dr had given Acidofilous which comes in the form of a liquid or milk base and a cherry chewable tablet that is supposed to promote the healthy "good" bacteria in the gut and so after asking about it today they were going to talk to ID and see if Madelyn is able to do this! Thanks so much for the information! I knew that with yeast you could get this "good" bacteria in yogurt but I learned today that you can get Acidolfilous with eating brown bananas!! Who ever knew that the soft, mushy part of bananas is actually good for you! Huh!
Anyway, after Madelyn's long nap back at the apt and Tyler wrapping up TCAP studying we headed for the ZOO! It was such a beautiful day and the new Northwest passage is now open for those who haven't been in a while! The polor bear exhibit is AWESOME-We along with the crowd were just amazed!! HINT: The new sea lion exhibit is still under constuction I believe for another week so that may be worth waiting for! We just love the sea lion show!!
Then tonight it was dinner and American Idol night!! So it's been a great day!!
We have clinic again tomorrow! Thanks for checking in on Miss Madelyn!!
Love Brandi
PS Our sweet St Jude sis Miss Brooklyn is back in town this week for her 3 month scans! Please pray for her and her family this week as they await results which are always stressful. Also pray for her mommy, Danielle as she is back in Oregon this trip due to her new job. I know this is incredibly stressful to be so far away. Also pray for her daddy, Jed and Miss Brooklyn as she has to be stuck for proceedures. We're hoping to be able to spend some time with her tomorrow!! Visit her at www.caringbridge.org/or/brooklyn
I also want to mention prayer for our friends Mark and Mylissa Horrocks, Bella, Izaiah and Samuel. They are incredibly in need of your love, support and prayers at this time due to some health issues with mom. I have not been able to speak directly with them in a few days so please stop by their site www.caringbridge.org/fl/bella and offer your support for this family. We love you guys so much!
Prayer request needed for the Rayborn Family as Jake had his brain surgery this week at LeBoneur. Please visit him at www.caringbridge.org/la/jakeowen
Well, I just thought this was going to be quick!LOL I think I'm finished for the night now!!
Opps we did it again…
We have landed ourselves right back into ISOLATION! We were not supposed to be back to clinic until this Thursday however, on Saturday Madelyn started with going to the potty often then on Sunday she went about 7 times with the loose stools so I called the Dr on call yesterday with my concerns that she may have CDIFF again and that I bring in a stool sample early. So that’s what we did on Sunday and this morning after calling to see about getting an ultrasound because now she’s having some belly pains, Sandy, our nurse practitioner informs me that she has in fact tested positive for CDIFF. UUUGGGHHH! No surprise here but none the less it is quite frustrating-I mean this infection is hard to get rid of APPARENTLY!
Today has been a long day for Madelyn and I as we were there til 8PM waiting on meds. Dad and Tyler stayed home studying for TCAP which start this Wed, Thurs, Fri.
We did have an ultrasound which also shows the Colitis is still there. The bowel wall appears thicker than last weeks. Her white count and ANC are both up-her ANC is 11,000 which indicates an infection but it’s better than being nutripenic (counts less than 500)! She has not had any fever either! The good thing too is we did not have to go inpatient-Madelyn was a little upset about that! LOL Of course we are on strict gut rest with no food or water for at least a couple of days-this is so terribly hard for her. Please pray for her as she is laying beside me now crying that she’s hungry as she tries to watch Sleeping Beauty. OH she is so mad and who could blame her-OH it just breaks my heart to hear her cry and beg for ’somten’ to eat- I’m just one to want to feed everyone who walks in the door, I guess I’ll make a good grandmother if nothing else!!LOL
Infectious Disease was called in for I guess you would call a second opinion and they have started her on oral Vancomycin instead of the Flagile, I guess 3 times was proof it’s not working for her! HEHE They have hooked her to a 24 hour bag of IV fluids for tonight and we will start back on the 24 hour TPN tomorrow night. We have lab check and clinic again in the morning as well as everyday this week. Please just pray that this is what is needed for Madelyn to get well.
I will be going for now so that I can try and keep her attention off being hungry til she’s ready for bed! Oh this is hard.
Love to all,
Brandi
PS Madelyn and Tyler got to see the Easter Bunny this weekend and Madelyn had him up hopping and dancing and giving many hugs and high fives! It was great to see her enjoying the Easter Bunny this year!! Tyler wasn’t as eager to sit on his lap so he stayed on the side lines! HEHE Thanks Miss Donna and Emily for the visit on Saturday and dinner at the mall! What fun!!
Tuesday, March 21, 2006 0:33 AM CST
For all those in the Dyersburg area~see MaDeLyN in the State Gazette! She was in yesterdays paper (Tuesday March 21) front page, full color so if you can get your hands on a copy you can read Madelyn's story and more on Habitat for Hope! Thank you Terra and editor at the State Gazette for your kindness and featuring Madelyn! You guys are awesome!! Thanks also to our Dyersburg friends and families for the love & support given to our family! Neal & I realize what a blessing it to have that love and support and we are truly humbled.
Great news from California....
Maddie had clinic today and guess what? We are out of isolation!!!YEAH!! We can now enter the hospital through the front doors and not gown up like little yellow chickens!HEHE I have to be careful what I say though cause Madelyn prefers yellow chickens to nothing at all!LOL She's so funny!
Anyway, we found out that we had a negative culture on the CDiff and the ultrasound today looks "MUCH BETTER"! So we just have to finish up the Flagile for the Cdiff and the IV (through her line)Merepenum for the Colitis for one more day then we are back to NO MEDS!!!!
They are tapering the TPN to 20 hours tonight, then 16, then 14 by next Thursday which will be our next clinic visit! Did you hear that correctly? We don't have another clinic visit (unless something changes of course) until next Thursday March 30th!! WOW! We are just so excited we don't know what to do with ourselves!
OH! And then in clinic Dr Furman looked at the sore that is healing so nicely on her bottom and Madelyn ask if she could stop the dressing changes and he thought that was OK! So of course Madelyn was so happy and had to tell Nurse Nicole then stood on the bed doing the happy dance with daddy, screaming NO MORE DRESSING CHANGE on my bot--tom (shake-shake)!!LOL
Tonight we are enjoying a surprise visit from Grandma Sherry and cousin Abby! The three of them are actually snuggled in bed now watching Dora! Yes, they are still going...the girls have run around playing while wearing princess dresses and eating jello! Just squealing and laughing and even some fretting over shoes!LOL We are hoping to do something fun tomorrow! It's been raining and quite cold here though!
Tyler has started having a sore throat and not feeling well and after some meds he was in bed early tonight. He's so loving when he doesn't feel well though! Not that I want him to feel bad but it's sure nice getting those hugs from my pre-teen you know!! WOW! That's hard to believe-a pre-teen? I can't believe he'll be a teenager in August!
Well just wanted to let everyone know that we had a great visit today and all is going well at the present and rejoicing in the good news! OH! By the way, those Bone Marrow biopsy's sent to California-NEGATIVE!!!!! Which means they do NOT see any NB cells in the Bone Marrow!!! Now that's something to shout about!!!
Now normally these biopsys are read at a lab at St Jude but because of the anti-body protocol Madelyn was once on it stated that the marrows be sent to a lab in CA for more detailed testing so there you have it! ZERO!! NONE!! NADA!!
I want to thank Angel Lori, Mrs Nelda Hawkins and Miss Donna Everett for the surprises sent this past week and also to everyone who has ordered Madelyn's Magnet! We now have more in so if you haven't gotten yours yet please let us know by emailing us at prayformadelyn@yahoo.com or go to Madelyn's HOPE site at www.habitatforhope.org/madelyn to get yours before they're all gone! We'll be tickled pink to know you have Maddie's Magnet Displayed!!!
Praising Him always,
Brandi
Friday, March 17, 2006 1:18 PM CST
TGIF!
We are still in isolation when we go to the Jude due to the CDiff so we have to enter through the isolation entrance, gown and glove up and then be escorted through the halls and where we need to go!
Madelyn had an ultrasound of her colon again yesterday and it is looking better! Praise Jesus! She has been on the 24 hour TPN hookup since last week and hasn’t been eating nearly like she was but apparently they don’t want her to so that her gut gets some rest!
I told you I have been reading up for the past two weeks now on eating healthier to fight cancer and so forth…well my husband working at a book store brings home I think every healthy eating book in the store (God love him!LOL) Anyway, I skimmed through and found a couple that I really love and returned those that I didn’t! One book had a page that showed and explained what that entire lab work our cancer kids get done each time we go to the hospital all means! What are normal levels and what they were lacking or in excess of when they aren’t normal numbers! Then another book was about what a cancer patient should eat to boost the immune system and so forth, how to cook with spices, anti-oxidants and cancer fighting foods! In short, we are all just trying to eat healthier together and it has been interesting! Everything I pick up in front of Tyler that isn’t “normally” purchased he just goes berserk saying I don’t like that stuff! Madelyn on the other hand picked up some juice and said, “mommy, is this whole grain?”LOL
Normally, Madelyn just got to eat whatever her little heart desired whether it be Krystal cheeseburgers, soft drinks etc just because with chemo, foods can taste bland and getting her to eat even that was a great success! Now that she’s been free from chemo for now 6 months she has started to eat better things like CORN, potatoes, whole grain breads, OATMEAL, cereal, apples and tonight she tried BAKED SWEET POTATOES with turmeric and cinnamon and she LOVED IT!!! WOW this is just wonderful and makes me so happy when my kids especially Madelyn now eats well!
Sorry I made an entire journal about what Madelyn eats but it has been such a challenge for two years and now finally she just seems to be this normal healthy looking child that wants to eat and try new foods and I am just amazed and PROUD FOR HER!
Now on with our exciting ‘weekend’ trip this week! When we got out of clinic on Monday the four of us headed to Burns, TN for some time with Aunt Amy, Uncle Matt and cousins Spencer, Reilly and Cade! Tyler and Spencer spent much time battling Yugioh cards!
On Tuesday we went to the
Adventure Science Center in Nashville where we ate lunch looking out from the top of Nashville! The kids had a great time!
They have one section about the body where they played laser tag as one team was pathogens and the other was lymphocytes! In the ambulance Madelyn just wanted to pretend she was a patient and lay in the back! Madelyn dressed in a hospital coat and checked the BP and temp on patient Pat-right up her ally! We got to do an age progression to age 72, dance on a piano, bulldoze a ball pit and catch planets with our bare hands! We went to a weather showing at the planetarium where we got rained on and then we were on camera as weather forecasters and the scene was freezing cold temperatures BRRRRR! Madelyn really enjoyed the “Bob the Builder” playhouse as she called it where you could see all the wiring, plumbing, insulation, sheetrock etc! Of course that part didn’t interest her as it did me-she just wanted to build with the blocks! HEHE
Tyler and the boys all climbed to the 5th or 6th level twisting and turning through mazes and tunnels! What a blast we had! One of the great things of home education! I recommend going on a day trip there if you're close enough!
Next, on Wednesday we got to enjoy a day trip through the
Nashville Zoo! This zoo is only 5 years old so there is not too many animals at the zoo yet-they are just getting giraffes in April! But the landscape and greatness of the park is amazing! Our
Memphis Zoo is really big and actually they just finished the Northwest Passage part that we are excited to go see soon!
So we have had a fun-filled ‘weekend’ so to speak~I told you our weekends lately fall on M, T, W!
Then it’s back to the Jude on Thursdays! Her counts are looking fabulous!
ANC-2100……..…….Good!
Hemoglobin-9.2……..stable-good!
Platelets-151…………up-good!
So the plan for now is just to let her gut rest and try and get this Colitis better and get two negative cultures for the Cdiff then we will talk more about when we’ll start something for the beast. UUUGGGHHH!
For now we are still enjoying our family time and trying to stay away from the hospital (no offense to those who work there! HEHE) as much as we can! We know that before long when treatment starts back and we deal with falling counts, more lab checks and so forth it will get much more limited.
Please continue to pray for our St Jude families! Pray for Madelyn’s cancer to stay stable until a cure can be found! We love you guys and thank you for checking in on us often!
Love to all,
Brandi, Neal, Tyler & Madelyn
Saturday, March 11, 2006 10:51 PM CST
WE ARE HOME!!!!
Just a quick update to let everyone know that Madelyn is doing very well at least you can't tell anything would be wrong by watching her!!LOL We went in on Thursday where she was just starting not to feel well and her belly hurt when touched but on Friday and today after starting the antibiotics that she will continue to be on for the next 10 days or so, she has been playing and having a ball!
We have done many crafts like making a frog puppet and a silly green birthday hat (she loves to pretend it's her birthday! She's at least 100!LOL) We made more paci boxes, painted a dragonfly suncatcher and many St Patrick's Day crafts!! She has slept very well through the night! She has not had any fevers and has just been very playful and silly!!
The sore on her bottom is still being covered and cared for with daily dressing changes but is looking really good!!
Her Hemoglobin and platelets are within normal limits and her ANC is 3500 and White blood count is 5.5 which is good but maybe alittle bit higher than normal for her but may be a sign that there is still some infection going on??
Our next clinic appt is Monday.
We want to thank everyone for their constant love, prayers and well wishes for Madelyn and our family! Reading the guestbook entries mean so much to us and this journey with all it's many bumps in the road has definitly been easier to withstand with all of you by our side!
I will update more soon!! We are so glad to be home!!
Love to all,
Brandi
Friday, March 10, 2006 3:30 PM CST
SeE MaDeLyN In tHe NeWs ToNiGht...
Just in case you missed yesterday evenings journal...we are inpatient at the Jude rm 2073!
So here's the scoop-Madelyn has tested positive again for the CDiff from a stool culture along with the colitis. She is being covered by Merepenum and now again with Flagile for the CDiff.
She has been feeling great! First thing she did last night is make a sign for her door that reads I (heart/4 leaf clover) Bo Bice! She knew he was coming on the AI show last night and she was excited!! Too funny! Her new fav right now is Bucky and Melissa?! She obviously loves the rocker style!! Personally I'm for Chris all the way! I guess he's a rocker too but without the hair! LOL Neal likes Taylor Hicks and Tyler is for Chris as well and I think Kathreen McFee too!! It is truly something we all look forward to watching as a family!!
Last night her belly was hurting and like I said she was so hungry but now with the TPN going 24 hours she's not complained too much today for food! We've snuck in some ice chips which certainly can't be enough to do harm her but has certainly satisfied her cravings and made her much happier! Well maybe I shouldn't say snuck in since we haven't been told no ice chips just no water! Is that the same?!!!! Please don't feel you have to respond to that!! HEHE
MaDeLyN WiLL Be iN tHe NewS TonIgHt!!!
Look for Madelyn on Fox 13 News tonight at 5 and 9PM and maybe 10PM CST! Also it will be shown on a New York satellite station! She did an in room video shoot this morning with child life specialist, Amy Kennedy! There will be an 8 year old St Jude patient featured as well! She and Miss Amy pretented to change dressings, flush lines, administer IV's etc to show what child life is like at St Jude!! This one was right up her ally!! They played well beyond the end of the shoot! She wanted me out of the room while filming so I am curious to see the little toot myself!!
Love to all,
Brandi
Friday, March 10, 2006 1:54 AM CST
Well here we are again….inpatient! UUUGGGHHH!
This was so unexpected today as Madelyn has been eating so well and doing so wonderful this past week! I guess it all started last night when she said her belly hurt then this morning she woke up with her right hip bone hurting so I called clinic and requested an Xray of the bone. We got to A/T where she had fever….well from experience, fever and bone pain don’t jive too well together so I was somewhat nervous now. Clinic called and said to go straight to Xray then to clinic so that’s what we did. During clinic Madelyn complained even more of belly pain and pointed from the right hip over to the middle of her belly. We then had an ultrasound and back to clinic. That’s when our 3 doctors came in the room and shut the door behind them-my heart was heavy and I had a sick feeling come over me and then Dr Hartford informs me that the Xray of the bone is perfectly fine (a sigh of relief indeed and now trying to focus) and then continues to say that the ultrasound is showing a worsening of the colitis. The thickening of the bowel wall has gotten much worse since last Thursday then says we need to go inpatient for antibiotics and 3-4 days of gut rest. This means Madelyn cannot eat or drink for at least 3-4 days. However, she is on IV TPN and Lipids. This doesn’t cut it with her bless her heart the child is so hungry. It just breaks my heart every time she cries out that she’s hungry. They have her on the antibiotic, Merepenum (sp?) I was so worried about the possibility of new tumor that I was still asking about the xray so it was hard to soak in what was really going on. I guess I have realized today that we almost treat her cancer as if she’s in remission and it may come back but guess what, her cancer is there, it has NEVER went anywhere-maybe that’s why too we try to get out and do fun things when we can knowing that it’s still there. I’m blessed today for stability!
The colitis can be really bad should the bowel wall rupture which is why they have her inpatient and having the surgeons looking at her as well just in case but this is our prayer at the moment that this will soon be gone. Madelyn ask me tonight as I was taking her to the potty to pray to God every night and every day for her belly to get better and to tell the nurses and doctors to pray for her too! For the past few weeks she has really been into wanting to say the prayer at meal time and asking me to pray for her as before she would act shy and nonchalant about it! It’s really sweet!
We have had some more fun times this past week as we took the kids to Land Between the Lakes to see the Buffalo since Madelyn had been calling herself that lately we thought she’d get a kick out of that and she did!! Tyler loves it too! We stopped at the Planteterium gift shop where she got a Buffalo caller before going to the Bison Range and she would just yell at those Buffalo to come out! We counted 25 in the herd and at least that many elk! We also had a nice picnic by the Golden Pond. Picnics have become a fun thing we do often now whether we’re outside or just having an ordinary lunch inside! She loves it!! Oh and yesterday on our picnic she ate a bologna, cheese, strawberry jelly and mayonnaise sandwich again! LOL She hasn’t eaten one of those in a while!HEHE
We have pretended to go fishing for sharks from her grandpa’s boat, flown kites with her brother and even made a birthday cake for Santa out of flour and water! She has been really busy lately!!
Well we were really looking forward to seeing Dora Live this weekend-what a bummer for me I guess since Madelyn didn’t even seem to mind when she found out we were going inpatient! She was H A P P Y! You know how much she loves to go inpatient-she had Miss Chrystal a running list of all the things she needed for her a Lucky Leprechaun room upstairs! LOL
I will be going for the night and we will keep you posted on any changes! Please pray for a complete recovery!
Love to all,
Brandi
Thursday, March 2, 2006 7:08 PM CST
What do you pack in your suitcase….
Happy Thursday to Madelyn‘s monkey friends! (She was a monkey today and she now says whatever she is for the day is what everyone else is too! Hey, she was a buffalo the other day?! )
We have had a really long day today and well Madelyn is napping at the moment so I thought I’d get some updating in…Lord knows it’s been scarce!HEHE We had to be there at 8:30 for an eye appt that has been cancelled and rescheduled for the third time and well at 9:45 we’re still waiting which was not a problem since Madelyn was really into playing her Dora game on the D Clinic computer and I got meet and chat with a really nice family of Jay Rogers from Trezevant, TN! That’s near our stomping grounds you know! I really enjoyed getting to know them-that momma of his likes to talk just like me so that was great!!!
We had assessment triage then an ultra sound where I’ll get to the results in a bit. The kids and I had lunch where Madelyn got more food than any of us! She is eating so great! She has been off her steroids since Sunday and is still eating well! Praise! She is even eating vegetables like corn and trying many new foods like the other morning I coaxed her into trying some maple and brown sugar oatmeal (yum)and she loved it and she even drank orange juice with it! She calls it puddin because that’s what daddy used to call it!
She got sick about the time to start on new foods and has never even wanted to try them but now she’ll try just about anything! Not that she likes it all-she didn’t like the broccoli & cheese or grape juice offered! I would have a lengthy list going if I ran down all the foods she was eating now! Leaps and Bounds!!
Ok so I got lost in the food and then after lunch we headed to speech where we got to play a game with Miss Allison and started on our “f” and “V” sounds! It was quite funny as she would do the sound with her lip in the beginning of every word even if the letter sound was at the end such as the word Knife! She would always say ffffffffknife!!!! Too funny! Did I tell you we mastered our S’s! Go Madelyn!
Then we headed back to eye clinic got her eyes dilated which she did not like! The poor baby cried and I felt so bad cause I didn’t know they were going to do that and so I had not explained it before hand to her. That always makes me feel bad like I’m letting them do mean things and not telling her-then we went to D-clinic to see our wonderful bunch-wow we’d only been gone for a week and it felt like an eternity! But it felt great at the same time! So then who calls us at the same time…eye clinic! Anyway, everything looks really good with Madelyn-Praise Him! We have prayed so long for her just to feel good! She was very tired by the time we got to clinic and showed out a little for Dr Hartford but that all subsided after a warm blankie and a look at Dr Hartford’s pictures of her new baby! Her lab results are as follows:
ANC 2,500.……….down some but good!
Platelets 97.……….down but ok (we transfuse at 20)
Hemoglobin 10.2.…down but ok (we transfuse at 8)
Her BUN was up slightly which just indicates that her kidney function is elevated possibly due to the TPN which she is still going to continue on for 14 hours per day.
She still has the sore healing on her bottom and the TPN with all the vitamins and nutrients will aide in helping with the healing process! So on with the nightly hook-ups we go!!
Her ultrasound is still showing some inflammation in the bowel wall of the large intestines namely colitis but Dr Furman says this could take months to heal. Because of this he is not ready to jump into any chemo at this time unless her tumors start to tell us otherwise. He and Madelyn had the best time giggling as she laid on the bed wrapped in her warm blankie as he teased her over her new “paci box” full of colorful paci’s! He is always trying to take them and she always winds up in tears but lately she has just laughed it off! I am so happy she is finally coming around or “warming up” to our own doctor! HEHE I mean it’s been 2 years so it’s about time ya think!! I believe it’s that she is off chemo(6 months now!) and feels better! He has mentioned on several occasions how “lucky” our girl has faired with her tumors staying at bay seeing that we have never had a NED.
So we are going to go back next Thursday for an ultrasound and we have to get a stool sample to rule out the C-Diff but other than that we are going to pray and keep Madelyn laughing and eating for the next 3-4 weeks with no chemo! We’ll also have PT and speech in there as well!
Oh! I almost forgot to mention we have results of her VMA’s and HVA’s which is a TUMOR MARKER indicated by a urine test which is directly relative to her cancer.
VMA is 12.2.…….NORMAL RANGE!!!!!
HVA is 20.1.…….Slightly elevated but CLOSE to NORMAL!!!!!! YEAH!!! Now breathe!!!! YEAH!!!
We are so excited when we hear numbers like this-we started with numbers over 2 and 3 HUNDRED! WOW!!! These new numbers have been pretty consistent since sometime last year which is another good indicator of stable activity! I know there are many kids (well only a few that I know of, ok 3 kids that are still lighting up on MIBG but are staying stable ok 1 kid is stable without chemo) It just amazes me how Neuroblastoma in particular can have so many twists and turns and that no two kids with this disease are alike? So what I guess I’m saying is this: I am not sure at this point when or what we’ll do as far as treatment goes but I do know that Dr Furman and the staff are keeping a very close eye on our baby girl to see that she is not put in the same predicament as she was in ICU last month. It was a very scary time. We have to be very careful in the treatment we choose now. Even anything “mild” could tip her over the edge at his point so for now we wait.
I also want to take a moment to ask that you please pray for a special St Jude NB friend of ours, Ben Bratten age 8 who is in isolation for pneumonia with ZERO counts. His recent scans have indicated new tumor growth. He is battling ZERO counts which means his immune system is unable to fight infection. Please pray for counts to recover very quickly.
Oh-I have to tell you this is sooo funny! Monday evening after our PT visit at the Jude we left and went to Huntingdon where Madelyn and Tyler’s grandparents live. Anyway, on the way Maddie yelled up to dad, hey dad you know what I brought in my suitcase?…………….My underwear and gum! LOL What in the world was she thinking that she had to make sure we knew she brought those two items! She is such a hoot!
Oh and thank you Morgan Fuller for the fun night of dress up! Madelyn sure hated to leave your house didn’t she! Thanks Wanda for being so sweet and letting the kids come play! It was nice getting to catch up on the many normal things we once enjoyed!! (Baseball games especially) I know Tyler certainly needed the time with someone his own age for a change! We miss our friends back home so much!!! Oh and how bout those football pants, Jeff?!! LOL
Ok I really have to go so don’t fret if I don’t update as often but I will be sure to let you know the ins and outs of our goings on at some point or another! We are just enjoying the beautiful weather we’ve been having with Tyler and I throwing the football around, swinging with Madelyn! The other day she and her grandmonna Beamon went shopping and she had $8.00 to spend! She came back with a playdoh toy for herself but also she had gotten me a victorian chair picture frame she picked out all by herself and then picked me some fresh flowers from the yard! How sweet she is!! She told us daddy didn’t give her enough money to get him and Tyler something on this trip! LOL Too funny!
Well, Tyler has school work to do so I will end here and ask that you please continue to pray for Madelyn to continue to eat healthy and that she be headed towards a complete healing!
Love to all
Brandi
PS Something else! Madelyn’s story and magnet sales were recently featured in the Dresden Enterprise! I am going to try my best to get it as a link on the site soon! Thanks to everyone who has purchased one of these precious magnets to display in honor of Madelyn and raising awareness for childhood cancer! If you haven’t already gotten yours you can do so by contacting us at www.prayformadelyn@yahoo.com or at www.habitatforhope.org/madelyn Again THANK YOU SO MUCH!!!! WE LOVE YOU GUYS!!!
Saturday, February 25, 2006 4:43 PM CST
Hello to all,
Just wanted to update and let you all know that Maddie is doing very well. She is eating like a pig! I can’t keep the child fed! HEHE I am not complaining though-I just think it’s funny to see since we haven’t ever seen her eat this much before! HEHE She is still on 14 hour TPN and 3 more days of the steroid. She still continues with the Flagile for C-Diff as well. I thought Maddie may have been getting a cold this week but it was possibly sinus’ she is not having the runny nose like she was.
We have been staying in mostly but enjoying some fun stuff! We have been working on our pictures. We just have a ton of them to organize and just put into a box if nothing else! It is surely a chore in its self! Madelyn and I were introduced to scrap booking last summer by our friend Brooklyn’s mommy, Danielle and now I am determined to get at least my book done! Madelyn loves to scrapbook so I have to be very careful or she’ll have all our pictures cut up!
We took a trip to Disney World~ HEHE from the living room that is! This child has such an imagination! The couch is our airplane! But before we left we had lots of shopping to do for clothes! She got in the stroller and I wheeled her around til we arrived at the clothes store (bedroom closet) then tried her favs on! Then when we got there (Disney)it was all about the toys! We had to go through all the toys! (from her room!) We pretended to ride every ride and just reminisced about our great trip last year! I am always surprised at how much she remembers and even some details that I once forgot!
Dad, Tyler, Maddie and myself all went to see the Pink Panther earlier in the week. I just loved that show growing up! I found the movie better than I had expected-quite funny! Maddie fell asleep as soon as she found out the pink cat wasn’t in the movie~woops sorry if I spilled!LOL
Maddie went on her second date with Nash Stewart Friday afternoon! This is the adorable 3 year old little boy of our friends Chris and Keri Stewart here in Memphis. Yes, she called it going on a date! She even put on her denim Gap dress from last fall that I can never get her to wear! LOL It was just precious and priceless! Of course they each had their moms and big brothers tagging along too! HEHE We went to see Curious George! Madelyn immediately wanted to sit in the same seat as Nash and at one point while eating popcorn she reached around and put her little arm around him then looked back at me and grinning she pulled her arm back! They shared popcorn, she brought some homemade chocolate chip cookies to share and he gave her a Valentine heart sucker! When the show was over they held hands all the way out the door and she just cried when we had to leave. It was sweet but quite funny to watch! So we had to promise another play date to Chuck E Cheese on Wed afternoon… Oh the joys of young love!
We had some special visitors this past week~special friends Miss Donna and Emilee from Dyersburg came to play! I believe they are coming to play again today! Maddie had the best time going from room to room shopping! She got out every pair of shoes she owns and set up her own shoe store! I won’t go into how many pair of shoes this kid owns-oh my! Thanks for the special treats and Valentine goodies!!
We also want to thank TCS-Team Cancer Sucks for the huge box of goodies they sent Maddie for Valentine’s Day! They are a group of people that does special things for kids with cancer to brighten their day and they did a great job…SMILE!
Also putting a smile on her face is our chemo angels, Ms Judy thanks for the Valentine teddy! And Ms Lori for the package of goodies sent! If you are interested in signing your child up for a special CHEMO ANGEL like Maddie’s just check out their website on the bottom of our page! They are awesome!
Our entire family also received some nice Valentine surprises from Angel Holliman from Northwest Arkansas! WOW-more paci’s! They were perfect and the paci holder is something she now carries EVERYWHERE! We’re even sleeping with it!LOL Great idea!
Well as you can see we have been staying pretty busy and enjoying some great days with the kids! We are off until Thursday from the Jude so we have lots of time for more fun stuff to come!
Love to all
Brandi
Special Prayer request:
Jake Rayborn
-Our precious friend Jake has had his bone marrow transplant and now is in the waiting game of seeing the side effects. Please lift him and his family up in prayer as this process takes place.
Monday, February 20, 2006 8:08 PM CST
This is Mark Horrocks, friend of the Beamons, updating for Brandi and Neal.
GOD IS GOOD!
Bone Marrow Aspirates are NED!!! Still waiting on bone biopsy which should be back soon. MIBG is stable with no new spots. Primary tumor site in abdomen continues to light up, and very subtle spot on left eye. Next clinic visit is Thursday March 2nd, and after that Maddie will have 2-3 weeks off before beginning treatment. Madelyn’s bottom is healing well, and Brandi and Neal continue to treat it with dressing changes, etc.
Friday, February 17, 2006 9:37 PM CST
UPDATE Saturday Feb 18, 3PM
Just had to share some excitement with you! Madelyn walked all by herself today! It's been 16 days since getting off the vent where she is finally able to take steps without help! What a milestone all over again! We are so proud of her!! Well with the severe icy weather outside here, we are staying in and working on lots of crafts!
Love Brandi
Maddie is home now. She had her bone marrow aspirates today and will get the results of those and the MIBG on Monday. Please pray that her scans will come back clear.
neal and brandi beamon
Friday, February 17, 2006 9:37 PM CST
UPDATE Saturday Feb 18, 3PM
Just had to share some excitement with you! Madelyn walked all by herself today! It's been 16 days since getting off the vent where she is finally able to take steps without help! What a milestone all over again! We are so proud of her!! Well with the severe icy weather outside here, we are staying in and working on lots of crafts!
Love Brandi
Maddie is home now. She had her bone marrow aspirates today and will get the results of those and the MIBG on Monday. Please pray that her scans will come back clear.
neal and brandi beamon
Wednesday, February 15, 2006 3:50 PM CST
UPDATE: Maddie is feeling great! She has been up and going since 7:30AM! We had ultrasound this morning and before I get to results I want to tell you this! She got to get a toy from the treasure box after doing so well on her ultrasound and she picked out some colorful soft rubber bugs-to scare Tyler and daddy with she said! All day today we have had the best time playing tricks on people! We put a bug in one of Tyler's Star Wars magazine's, one in daddy's book, one inside the laptop, one in the tissue box where we noncholontly ask Tyler to get her a tissue and one in the chocolates box for later when daddy tries to get into it! We really scared Miss Cathy our NCA with one on Maddie's arm when she lfted the cover for her Bp and one on the thermometer!!LOL What fun!!
OK OK on with the results: But before I can tell you results I have to tell you this!! We were on our way to the Pajama party presented by Target today at 11AM when Nurse Dori came in with the news....Madelyn's stool culture has tested positive for CDiff.UUGGGHHHH OK so here she is sitting in her PT stroller with her fresh clean jammies on (a T-shirt with a cute little monkey jumping on a bed that was one of her Target gifts waiting by the door this morning!) Anyway, what a bummer...so needless to say she couldn't go so I took Tyler quickly down there and we gathered some crafts for Madelyn, played a game of tic-tac-toe, won a prize and we headed back!
OK OK now the results-Madelyn's utrasound actually looked worse today with inflamation not just on the right side of the colon but around the top as well. But at least now we know what is causing it, the CDiff and it is now being better treated with Flagile every 6 hours by mouth for 14 days! They originally said she would not be able to eat or drink for the next two weeks to rest the gut but now that has been retracted-thank God! She wants to eat so bad but they do want her to start with only liquids so that's not too bad! We did sneak in two gummy bears (only red of course) per a doctor last night!! All that candy being given on Valentines and the poor girl couldn't eat a bite of it! Oh well, the good things is now we know and of course that means isolation for at least two negative cultures. UUUGGHH!
Please continue to pray for Madelyn to recover quickly. I also ask that you please pray for her as she will be havving MIBG tomorrow along with bone marrow aspirates-yes they are going to do both at the same time. Oh how I hope this is ok to be sedated for so long with the lung issues not far behind us. Please pray for her continued health and a miraculous clear scan tomorrow!
Love to all,
Brandi
Thank you to Miss Jennie Luebbe and Miss Penny for the visit today and to Seth and Rebecca for the princess books! We had such a great time with you guys today! Thank you Sara Barnes for the visit and the cutest, biggest Valentine puppy we've ever seen!! Thank you to the staff of Target stores for the great parties you give here at St Jude!!
Wednesday, February 15, 2006 6:51 AM CST
Hello from the second floor!
We had a really good Valentine's Day! First of all Maddie's counts have come back down to pretty normal
ANC 6600......good
Hemoglobin 11.2.....down but good!
Platelets 109......down but good!
So I guess the antibiotics are just what she needed! She had the best day that she has had since ummm Jan 15th!! YEAH!!
Childlife put cupid boxes on our door for each of the kids and throughout the day the nurses would come by and drop special Valentines in their boxes!!
We receive many nice gifts and cards on our special day as well! She got a projector flashlight with interchangable Valentine messages that she loved playing with during the day! So the room stayed pretty dark most of the day! Thank you Stacey and Jake O for the BIG smooooch pillow, those fun strawberry sunglasses and fun surprises! Thank you Miss Bella for those fun fuzzy pink girly slippers and the phone call from Florida!! It was kinda hard for Madelyn to hear her from so far away!LOL (I think it's just her hearing!HEHEH)Thank you to the Hawkins family for the fun activity books and surprises! She has been doing homework like big brother Tyler now! She calls her ABC book her Science book! HEHE To Miss Bertie Lou, thank you so much for the little surprise sent! Thank you to Porter Christian Academy in Newbern, TN for all the cards sent for Maddie and Tyler and Strawberry Shortcake suprises for Madelyn! Thank you Christie McCormick for the Dora bag, that precious furry monkey and Dora Surprize Ink pad that she has so enjoyed! Thank you to Tommy Cassidy for having you and your friends make special Valentine Well wishes for Madelyn at your birthday party~that was so sweet! Thank you Vickie from Immanuel School for the snacks! Lisa and Christina thanks for the visit and watching AI with us!! Madelyn really enjoyed putting the Barbie Stickers in the book with you!
Oh back to our big day after all the days excitement, Madelyn wanted to get down out of the bed! On her feet! And then she started walking! To the door! Then to the nurses station to see her name on the board! Then she walked to the playroom! OH MY!!! Way to go Maddie!! Talk about excitement! When her legs that stuck out like a duck waddling got to hurting I picked her up in extreme excitement with praise on how well she did!! YEAH!! This is the first time she has walked again since Jan 17th!!
Grandmonna and Pa stayed with Maddie while Neal and Tyler and I went home to get our car just in case we get to leave by this weekend we'll have a vehicle while dad is at work! Then we had lunch at Buffalo Wild Wings before returning to the hospital an then getting his Valentine surprises!
Maddie had a great day playing in the playroom and doing crafts for the most part! She slept well throughout the night. We have another ultrasound scheduled for this morning. Please continue to pray for a quick and complete healing of her colon.
Love to all,
Brandi
Tuesday, February 14, 2006 0:06 AM CST
Bet you can't guess in a hundred years where we are right now???
Well, we are back inpatient on the 2nd floor, that's where! We had all plans of coming in today for regular appointments and to get an ultrasound to check on her stomach pains. Boy, how things change fast around here! We had our bags packed and were traveling to Grandmonna and Pa's house this evening and then taking the kids to a movie and their favorite Pizza place, Snappy Tomato Pizza for Valentines! Now we will make the most of our day here with our extended family at the Jude and Grandmonna and Pa are coming here! Maddie cannot eat for two days to let her bowels rest so we will have to skip ordering any pizza to the room!
She has a thickening of her colon wall. Also her white count and ANC is up pushing the 20,000 mark. This is quite a jump from Friday and shows that there is much fighting and somekind of inflammation that could be masked from the Prednisone, a type of steroids she is on. Dr. Furman admitted us this afternoon and has started Madelyn on IV anitbiotics including Tobramycin and Merepenium and careful observation. This is apparently a condition that can worsen and even get serious enough to warrant surgery to remove a section of the colon as we have had a meeting with them already just to let us know they are up on the situation. Also Madelyn's admission to the hospital is because of her weakened condition. They can watch her more closely in case her condition worsens. Please pray that Madelyn heals quickly and the antibiotics do their job.
Love,
neal and brandi beamon
PS on a positive note~we had PT today and Maddie crawled three steps on a padded mat to the bean bag toss and stood on her knees to play! She had the attention of the entire PT dept!! Go Maddie!
PSS: Thank you to Austin Taylor and family for the Disney Princess game controller! Now Maddie looks like Tyler!HEHE
Thank you Salston Methodist Church, Salston, NC for your continued support for our family!
Thank you Tom and Tracey Cassidy for the wonderful snacks while inpatient~we went back home and got them for this trip in too!
Thank you to our chemo angels Judy & Lori for the special Valentine surprises!
And to all our friends who have sent Valentines and signed the guestbook! Thank you!!
Please let us know at prayformadelyn@yahoo.com if you'd like to order a Childhood Cancer Awareness magnet in honor of Madelyn!
You can also order by credit card at www.habitatforhope.org/madelyn
We are getting your orders and they are being shipped via UPS! Thanks so much!
Monday, February 13, 2006 5:57 AM CST
Good Morning!
Maddie is doing ok. I still have my days and nights mixed up from being at the hospital. I fell asleep around 5pm when dad was getting home from work and I've now been up since 4am! And guess who is sitting up with me! She doesn't sleep well unless she is right beside me! SMILE
I think she is loving all the morning shows on Disney!
Madelyn has been having some stomach pains to the point where she is requiring some pain medicine about every 8 hours. We have an ultrasound scheduled for this afternoon to see if the Colitis that was suspected in last weeks CT is any better.
We have lab work and D-clinic along with surgery clinic to check the sore on her bottom today. I forgot to mention we had a visit with Lanetha who has the most incredible knowlegable regarding this sort of thing! I remember the first day at St Jude they accidentally got the arm band too tight on Maddie's left wrist and caused a quarter size blister that needed medical attention for weeks. Anyway, Lanetha jumped right on it and it healed perfectly!
Maddie would make us wrap the entire arm in a teddy bear hospital gown so that no one would see it! It got more attention than she wanted!HEHE
We are now using the silver sulfadiazine cream with Niastatin powder mixture using guaze and Bioclusive sticky film along with a no sting barrier, Cavilon that helps it stick without sticking to the skin! This works so much better than Duoderm or any other covering we have ever used! Her bottom now looks like a large pink/purple bruise with some white 'new skin' spots. It is looking much better than before!
I notice she has a short outward grunt that she does occassionally. They assure me it's not 'grunting'. She does it mainly when she's laying down I've noticed. She has done this before when we were hospitalized so I am hoping it is part of her lungs recovering. It is very concerning to me though.
They really need her to do a lung test where you take a deep breath and blow all your air in a tube to test for lung strength and function but she is just too little to understand what she needs to do much less have the stamina to do the task. I think 5-6 is the age for doing this sort of test. We are going to try our best to get her to try! If anyone knows anything that might help please let us know!
I have printed some information regarding natural meds to boost lung function in children who are immunosuppressant to see what Dr Furman thinks!
Have a great day! Please keep Madelyn and our St Jude friends in your prayers!
Love Brandi
Sunday, February 12, 2006 9:23 AM CST
Maddie and Miss Allison doing speech therapy!
Okay so I just posted a journal this morning of thoughts from Friday that I had written and forgot to copy and paste so I went ahead and posted it to share with you! It is now in the journal history if you missed it!
As far as Maddie's broken spirit...well around 5pm on Saturday we receive a visit from friends Sara Barnes and her sister Allison and Madelyn just came alive! Thank you Jesus! 
See the hairbow?!
Well let's see...from the time they walked in she wanted up off the couch! She wanted to see the snow outside so I picked her up and she sat on the other couch next to Miss Allison then she wanted to be read to! Then she wanted to show them her sequin heels she made and put them on too! (above pics!) She wanted her new pink animal print pj's from Miss Jenny on! Then her pink princess ball gown with her new pink tennis shoes! Her style, you know! And she even stood up! We took pictures and we all laughed alot!!
Then she wanted her Dora house out! We played Disney Candy Land (she beat us all!) and then Candy Land DVD (of course we had to hold her and she won that too!) but she had such a great time and even cried when they had to leave. Well thanks girls for bringing her out of her shell so to speak! It was so wonderful to see her so happy and wanting to play and have fun!! Yeah Maddie!!
So hopefully this is just the beginning of her coming around! She still tires very easily and naps alot! She just got up at 8:30 this morning we played with Dora's talking house and it's now 10, and she is back to sleep! See what I mean!
Just keep praying for her strength and spirit to recover! I hope to post more fun things soon!
Love to all,
Brandi
The plan: We will have lots to do this week at St Jude~an MIBG is scheduled as well as bone marrow aspirates. She has PT and OT 3-4 days a week as well as lab checks and clinic. Please pray for the sedation team, Dr Furman's decisions and that she tolerates the sedation well. She seems too weak for sedation right now but praying for this to change!
Scans will depend on what treatment options we need to use.
Sunday, February 12, 2006 8:55 AM CST
I wrote this on Friday night and forgot to post so here it is!
A broken spirit?
With the winter snow coming in today we still had appts to get through! Madelyn was not up to getting out this morning as she cryed getting dressed but the important lab work had to be done! She was excited to get on her hat, gloves, scarf and pink furry boots for the cold weather but into the day she was still not happy. Her lab work looks great:
ANC is 7,800.…WOW! That’s great!
Hemoglobin is 11.1.….good!
Platelets are 120.…good!
They mainly needed to see if her potassium levels were ok and if TPN(the IV nutrition she receives in her central line) needed to be adjusted. All is good!
We had speech with Miss Allison today and Madelyn had two less mistakes with her letter sounds than compared to her Dec evaluation!! WOW! For a girl who just got off the vent one week ago she did well as she breezed right through doing all her words today without tiring and getting fussy! She has mastered her s’s or “ssssnake sounds!” They are now going to work harder on V’s!
She told me a few days before starting the round 2 antibody as we were sitting in the kitchen cooking that she wanted to start wearing her hearing aids! Remember, her pink and white swirl earrings that look like creame savors! Well…I knew that by not pushing the matter way back when that eventually she might want to wear them again! I’ll let you know!
While we waited for pharmacy, the buzz around the hospital was all about SNOW! And boy was it snowing! The PCC lobby was crowded with spectators so the kids and I headed to the second floor to watch it from the big wide glass windows! It was a beautiful site to sit and watch Madelyn stare at all the people down below with snow on their heads! HEHE She thought that was funny! Tyler was so excited to get home and play in the first snow here this year! As a 12 year old, playing in the snow is a big deal and that’s all I’ve heard for months him asking is it ever gonna snow? LOL
Well for a trip that normally takes 25 minutes, our travel home from St Jude to Germantown took 1 and a half hours! Whew! Madelyn slept most of the way home but become very uncomfortable. She was crying that her back was hurting so by the time we arrived home it was time for her some pain med and a nap!
Her demeanor since getting off the vent has seems as if she has a broken spirit. She has not seemed like her usual self. Of course she can’t bear weight on her legs yet so she just wants to lay on the couch all day. We read stories and play but for the most part she seems disinterested and just wants to watch TV with napping in between. She often just sits and stares and I wonder what she’s thinking…I try and make her laugh often by doing silly things and she does smile but it’s very subtle…I am really worried if her spirit is broken and if she’ll bounce back.
Please keep Madelyn in your prayers!
Love Brandi
Thursday, February 9, 2006 1:05 AM CST
3 weeks 3 days-Leaving the hospital!!!!
WE ARE HOME!! After getting her once a month antibiotic, Pentamadine which takes the place of Septra, we were released!
It was so nice coming home to such a clean house-thanks again mom and Tyler! The challenge is now keeping it that way! LOL After unpacking both vehicles and putting things away Madelyn and I curled up for a nap this evening after being up most all night last night!
Madelyn has not slept much since getting off the vent. She mostly catnaps during the day and just sits up watching TV with me during the night-after discussing it with the Dr's this morning they feel it's the steroid! They ordered some Benydryl to give at night and whaaalaaa-she's been resting well for quite a while now!
She's been such a sweet mellow little girl this week! Very quiet with vistors but silly and giggly otherwise. Wanting to rotate between mom and dad's arms and the "water bed" as she calls it!
Madelyn received some very special vistors before we left today! Thank you Mr Jeff for the visit and to the Breedloves for the Valentine balloons (seen in the above picture), the Thomas the tank Lady train piece (Santa brought Maddie a wooden table with train set for Christmas), stickers and candy! Ryan is here for scans-visit them at www.caringbridge.org/tn/ryanbreedlove and pray for his complete healing!
Thank you for the visit, Benita (Mom of Miss Lauren Lewis who is only 2 days away from finishing radiation and finishing treatment!) Wish them well at www.caringbridge.org/visit/laurenlewis
Thank you Mr Horace and wife for those very girly sequin shoes that Madelyn had the best time decorating today! (see pic in photo album!) Even big brother got in on the action-only because she ask!HEHE
Thank you Miss Ally Cameron for the princess cell phone (seen above in photo!) She is a NB patient/friend here for her 3 month scans. Please pray for this family that no sign of cancer to be found!
To everyone who has sent cards, stopped by, called to check on us, signed the guestbook, said a prayer...thank you so much for all that you have done to help and encourage us through Madelyn's ordeal! What an awesome network of support we have as Maddie has and continues to touch the lives of so many!!! We love you all!
Now on with the CT RESULTS:
The CT was taken of the chest, pelvis, abdomen and compared to the Ct on 12/05/05, just before round one of hu14:18IL-2 anti-body .
The primary tumor in the abdomen is not pushing as much on the Vena Cava which indicates that the top of the tumor may have shrunk slightly suggesting that the therapy is working.
The pelvis region shows thickening of the colon wall suggesting some inflammation. They are not worried about this as it should clear in time!
The lungs has a small "nodule" in the upper right lobe but reports says it appears to be a blood vessel.
I am not happy with the lung part. Not that I think it's cancer but I still need to know what it is! We have clinic Thursday PM and I am hoping to get some clearer answers from Dr Furman!
I am thinking that we may need to inquire about a pulmonologists?,if that's the correct Dr-someone who can explain or help us better care for and protect Madelyn's now damaged lungs.
Madelyn also received her special stroller today(in the above Picture!) It has a pink foam cushion with the back molded out to relieve pressure where the bed sore is healing! She loves it! It has a large tray and PT brought her lots of stickers to decorate it her own!
I guess that's about all of todays excitement! Neal and I have reflected back over the past several weeks and are counting our blessings and those lucky stars too!! We can't wait to be back in clinic tomorrow! WOOOHOOOO! Never thought that would be such a thrill!!HEHE
Love to all,
Brandi
SEE NEW PHOTOS IN PHOTO ALBUM!!
Wednesday, February 8, 2006 2:00 AM CST
Madelyn did well laying perfectly still for her CT scan today! This is one she has always been able to do without sedation!
We should get results this morning! Please pray for her lungs to be restored and that there is no sign of cancer!
Madelyn has had another good day! We were up early this morning and decided we would venture out of the room to the big glass windows on the second floor that overlooks to the outside entrance to watch the nurses coming and going this morning! That was fun for her as we saw many familiar faces!
She ask me why are they walking so fast...either they're really cold or late for work!HEHE
She has had her dressing on her bottom changed and says it doesn't hurt! It still looks raw but getting better!
She has eaten for the first time after getting off the vent (5days) She had a pringles chip, a couple of bites of mac and cheese and half an Oreo cookie along with milk, tea and Sprite! Baby Steps!!
We may be GOING HOME on Wednesday!!! Her TPN is already changed to a pump to take home! Her Oxicodone for pain, steroid and Clonidine for high Blood pressure are by mouth. She has finished all antibiotics so the only thing we are waiting for is PT to give us the go ahead!
Madelyn had PT with dad and Tyler today while I got some rest and she did great sitting up! They are ordering her a special seat for her to be carried around in due to the sore on her bottom.
WOW! Several doctors have commented on their amazement of Madelyn's body to recover through all of this and the incredible team in ICU! One doctor even noted it to be an 'ART' rather than anything you would learn in a text book on what they did for Madelyn's vent settings when her CO2 would not come down! Even noting that we were very close to losing her on that Saturday, the day after going on the vent. I knew how bad things were but to reflect back and to see her smile today you cannot say thank you enough! Thank you Jesus! We are so grateful to this INCREDIBLE team in ICU for not doubting Madelyn's ability to keep fighting and never giving up on her when things went from bad to worse!! Please continue to follow Madelyn's Miracle Milestones and see the days the Lord hath made for us all!
thankful,
Brandi
Tuesday, February 7, 2006 2:10 AM CST
May the Lord continue to heal and protect you baby girl! That is my wish!
Our sweet girl just continues to amaze us daily! The above picture was taken today with PT nurse, Lynnette. Madelyn received the game CandyLand Wheel from a special friend and today she ask to play it just in time for PT!
I had her punching out the cardboard pieces with each of her hands while I put the spinner together then the Physical therapist ask if she could punch them out with her feet? She thought that was funny! Basically, it took almost the entire PT time doing just the setting up part of the game but you can see how much fun setting up was! Then she and I took turns rolling the dice with each hand!
We had her laughing most all day when she was awake! I ask her if she knew how long she had that tube in her mouth and she said one day! SMILE!
She also said she liked that other room better (the ICU room!) because it's bigger! This is one of those times when bigger is not always better hun! HEHE I think she's happy to have her "sandbox" bed though! The bed is made of sand and air not water like I said in a previous journal! Anyway, the nurses here on the inpatient floor come in just to feel Maddie's special bed!! Or maybe it's to get Valentine suckers? HEHE Either way we're glad to see them!!
Thank you to Allen Smith and mom Amie for the visit and that wild purse and kitty that kept jumping out onto Maddie-she had the biggest laughs over that kitty! Thanks for the Strawberry Shortcake book too!
Thank you to the Duncan and Churchill families from IL, friends of St Jude patient Nolan Kane. Madelyn wanted her Valentine teddy to sit at the end of the bed for him to see her!! HEHE Sorry that I missed meeting you guys but I hope to very soon!
Thanks Miss Sara and Miss Anna for the visit today!
My mom and Tyler were back today! Tyler was so excited telling me all about the Steelers game! He's a big fan of theirs next to the Titans!
Sorry mom for falling asleep while you were here I just couldn't keep my eyes open any longer! Thanks for all you do in taking care of Tyler when I can't and getting him back and forth safely! I pray for you everyday!! I love You!!
The magnets ordered thus far are being shipped soon thanks to a special sponsor/donor who has offered to pay for shipping on all orders!! THANK YOU TO folks at UPS/Nashville for your generous help with this fundraiser where a portion of the proceeds will go to
Habitat for Hope!
Though the magnets will help our family after two years at St Judes and exhausting funds we still feel a portion should be "given back" to a non-profit organization we feel so strongly about that gives HOPE to others!
This organization has helped our family and I have been blessed to help them help others as well! For instance, once a family of a newborn and patient needed a double stroller for an easier hospital visit. Neal had a paypal account so Habitat currently in Florida put the money in our account and we picked up and delivered the stroller to the Grizzlies for when they arrived off the plane!
They exists to assists families of children with cancer or life threatning illness around the country. However, being based in the Memphis area soon will allow for them to concentrate on this area of need while branching out! While St Jude and Lebonuer Children's Hospital here in Memphis only allow for 4 people per room including the patient, makes it difficult for families with 3 or more children who then have to stay for a fee at a local hotel. They hope to in the future to be able to provide housing for overflow as well as for grandparents or family who may want to come visit the ill child! These are just among the many ideas set forth with this organization!
Please reach out and support families helping families!!!! That's Habitat for Hope!!
We hope to continue this effort as the organization will be transitioning to Memphis by this fall! We ask that you feel free to check out their site and see for yourself what they have to offer and the vision of the organization! They will send you a free packet on ways you can help! I know you will be inspired as well! We thank them for their devotion and love for others and following their hearts as God uses them as a vessel to do good for others! It has been a privalege and an honor to see what this family has and can do for others and I am at awe of the sacrifices they've made, giving up their church home, and leaving their families and long time friends to be closer to the children in Memphis! WOW! I have chill bumps thinking about their vision and goals for the future unfolding before us all!
We also support St Judes in many ways by doing speeches and fundraising events for ALSAC in which Madelyn has raised millions! We will always be looking for ways to help these two amazing organizations that inspire HOPE & LOVE to others!!
Madelyn will be having her CT scan at 4PM Tuesday! Please be with us in prayer as we desire a complete healing!
Love to all,
Brandi
Could I possibly write a longer journal???HEHE
Monday, February 6, 2006 4:00 AM CST
Hello friends!
Well we've been inpatient for 3 weeks now! But we are certainly heading in the right direction that's for sure!
Madelyn is getting stronger day by day! Last night while she was sleeping I watched her raise her right arm (still trembling)reach up and scratch her brow! This is the weakest arm that had the arterial line and wrapped in a splint for 2 and half weeks! Baby steps!!
She has been asking to get up to go to the potty several times a day! I think she has realized that by going in the potty keeps us from having to change the dressing on her bottom daily! Good girl! Please pray that the bed sore heals well and fast and that no infection sets up!
She is still wearing her "moon shoes" as we call them to keep the tendons from shortening! Tomorrow PT will be coming in daily-for PT of course!! HEHE
Please pray that she tolerates it well!
She has been doing so well today still gets uncomfortable occassionally but is not in pain!
We have been handing out Valentine suckers to the nurses who come visit us!! Madelyn has actually been belly laughing tonight as I kept pretended to lick her sucker as she sat in my lap! She thought it to be funny...and they say laughter is the best medicine....SMILE!
OK so I told you guys that Madelyn's Rainbow of Hope page is up and going...well I guess I should give you the link if I want you to visit, huh!!HEHE
Here it is!!
Madelyn‘s Rainbow of Hope page
This site is in addition to our CB page so I will be adding it as a link to the bottom of our CB page! Thanks for visiting!
Love to all,
Brandi
Please keep Madelyn in your prayers as we will be heading for testing this week and next. Her CT is on Tuesday. Please pray that the hu14:18IL-2 antibody was effective in her healing! Glory be to God for her recovery from ICU!
I can't say enough how we feel about the power of prayer. We are humbled by the outpouring of love and prayers going up for Madelyn and our family over this past few weeks-we are truly blessed and we want to give each of you the biggest hug!!! She is such an amazing little fighter and we will continue to fight the big fight!
Please also remember our St Jude friends in your prayers as well.
Ben Bratten is inpatient with fever from a new Phase 1 study he is enduring to lesson tumors before possibly going on the antibody.
Our new friend
Kenyon King NB patient, is inpatient after recovering from surgery and starting back on his chemo protocol.
While in ICU, we met
Evan Delaughter who is a stage 3 NB patient on a vent recovering from RSV.
Jake Raborn will be heading to transplant very soon and they will need tremendous support more than ever.
Ryan Breedlove and his dad Jeff will be coming in this week for EUA (test to detect cancer in Ryan) and Jeff will be having appts as well. Please pray for no sign of cancer.
We have had a couple of new friends outside of St Jude who I would like to share their web sites with you,
www.christithomas.com NB patient who has just received the hu14:18IL-2 antibody at CHOP.
Kendall from New York is a NB patient who has recently relapsed.
Love to all,
Brandi
Sunday, February 5, 2006 0:18 AM CST
Hello from the second floor!!!!
Thank you to all our ICU nurses who took such great care of our girl and to all who cheered her on to victory!!
We were moved this afternoon to rm 2068, phone # 495-5268! Madelyn is still very weak and some what unable to get comfortable since they had weaned her Dilauted and Versed. She keeps saying she is not in pain when we ask but after giving her some Dilauted she has finally been able to rest very peacefully tonight! Her bed sore still looks like a red and raw open sore but is getting smaller and better! They are treating it with Acticoat and Allevyn adhesive.
Thank you to Keri, Jake, and Nash for the visit and the chicken pot pie tonight, it was so good! Thank you Lisa and Christina for visiting and the chocolate!! I am hoping Madelyn will be up to playing her new CandyLand Wheel game tomorrow! Thank you to Patrick and the crew of Borders Books for visiting and the bucket of snacks and books. Those will be great help pass the time! Thanks to my family, Donald, Rutha, Tommy, Francis, Joyce, and Rachelle for visiting with us these past two days. And Landon thanks sweetie for the princess bracelet for Maddie, she has worn it all day! Thanks to all for the prayers and support from everyone.
Love,
neal and brandi beamon
PS We want to say thank you to ShugII and to Frank Morris for the special message you shared to others and to the town of Minden for accepting Madelyn as your adopted St Jude baby!! We are humbled, honored and blessed for your love and support!!
Please visit the Minden/St Jude auction going on this weekend at www.mindenstjude.com
Saturday, February 4, 2006 4:36 AM CST
Look at her! She wanted out of the bed today and into Daddy's lap! Picture taken Friday, Feb 3.
Madelyn is doing well!! Today she has had her NG tube, ART line and catheter all removed! She laid very still and held daddy's hand real tight and did not cry for a second! She is still on a small dose of dilauted while they wean her but she has been such a little trooper!!! Praise God!
Respiratory comes in several times daily to hear her cough and do some blowing to get her lungs strong. She dosen't like the blowing but coughs on demand!! Baby Steps!
Physical Therapy has started to come daily to help with moving those muscles! She fretted at first but then they got her to holding a Barbie and she liked that! It didn't take but a few minutes before she was tired out!
She is talking very little mainly just nodding her head slightly to questions. Her first smile was that in the above photo when she was hiding under the covers waiting for me to come in the room from resting! I looked all around the room for her thinking she couldn't possibly be out of the bed!HEHE She has not had any pain! Thank you Jesus!
Finally after I held her awhile we put her back into the luxury day spa for her to rest! During the night tonight we have been reading stories, I reminded her of Jack and the Beanstalk where Grandpa always pretends he's the Big Giant and she grinned so big and even chuckled saying, Grandmonna always hides me under the covers and even shivered like she was scared!
We looked at pictures of the photo shoot (she dressed up in every costume she had that day!)she and I had at the apt on Jan 15, the day before going inpatient for our second round of the antibody-she would raise her little arm and hold the picture and look at it for a long time! Then we got into pics of our St Jude friends!
We are so thankful for each and every day! Thank you to everyone for your continued prayers and love for our family!
Thank you to all the nurses and Dr Morrison who have come by to check on Madelyn. Thank you to Pam Glover from Immanuel Lutheran School for the fruit and snacks you have sent! We also got to see our buddy Jake Roberts today and his Mimi, Becky! Please visit our friend Jake who battles NB and has been in remission many months now!www.caringbidge.org/visit/jakeroberts
Love to all Brandi
The plan: We are getting the femral (sp?) line out tomorrow and going to the second floor! Not sure how long but they want to see her walking first!
PS Thank you to everyone who has ordered Pray for Madelyn Magnets! My best friend from Nashville, who I have known since Kindergarten has offered to organize and take care of all orders for us! Thank you Emily for doing this! I have posted the information and email address above for anyone who would like to help our family during this time. A great reminder to "Pray for Madelyn"!!
Madelyn's Rainbow of Hope site is now up and running where you can purchase "Pray for Madelyn" magnets by credit card also! Some of the links are not live and our webmaster is still working on Maddie's friends!
OK I think I am done for the night! Love Brandi
Friday, February 3, 2006 3:15 AM CST
Look at that amazing little fighter of ours!! Just one day shy of two weeks on the vent. Our princess is awake, breathing on her own and off the vent!! This photo was 30 minutes after extubating this morning! She is watching a movie! Thank You Jesus!
I apologize for being short this morning with little enthusiasm of her coming off the vent, (Lord knows how joyful we were inside!)but after being up since 5:30PM the night before then early in the morning she started becoming much more "aware" as they began weaning sedation, I couldn't leave her side, I thought she was back to sleep around 10am so I went to the parent room to sleep until she awoke or needed me while Neal and his mom watched over her in the room, that only lasted for an hour! At 11am, they had come to get me because she was asking for her momma (lip reading over the tube of course!) It was then that they took her vent rate down from 10 to ZERO! I thought that was quick but apparently she was breathing so well over the vent that they needed to see if she could do it ALL on her own!
She was so patient and so brave with only twice getting agitated to a point of rushing out frantically to a nurse to suction her tube. I know I must have startled Nurse Julie today (who was covering for our nurse) but Madelyn was in so much distress, mouth wide open and screaming with a rising BP and heart rate there was obiviously something to be concerned about and the worst part was there was a fellow doctor standing over her with a stethascope to her chest- OH! I get so mad just thinking about someone (a doctor)seeing her suffering and not doing something about it-not to mention that my nerves were on edge and no sleep, it is no excuse it was so uncalled for here at SJ. I rushed out to Julie for help and she was quick to come right in and knew immediately she needed suctioning, even saying it is a feeling of drowning...could you imagine watching your child drown....she was so patient in her work and talked Madelyn back to a calm state-Thanks so much Nurse Julie. The ICU nurses are incredible!!
I wish I knew who the fellow was that was in here, I didn't even want to look at her when it was all said and done cause I would have got with my people to boot her out of here-you know when you've been here as long as we have, my senority level is about 3rd in command now, right! HEHE Sorry, just trying to humor myself! HEHE
Anyway, I would never mean harm to the integrity of St Jude and yes we are all human but I am my child's only advocate and I cannot stand back at this point and say what if we'd reacted sooner? I am not a "registered" nurse just one "registered" by God to care and love her! I love this place and I have such compassion and admiration for the drs and nurses and even the janitors who work on making this the Best Place to work and be at when your child is ill but I have to say there are a few that don't have their hearts in the right places! We have also come too far to let human error be the culprit of something major happening! OK I am done justifying my actions for today. Knowing that my little girl can look into my eyes and tell me she loves me makes it all worth the effort of having her voice heard for her!
At 11:30 like I said earlier Our Hero, Mr Doug from respiratory came in to sit her up with pillows and gave her her voice back!! She did not even cry! She just kept coughing which was so good for her to do and then wanted the paci from her hand! She was so tired. Praise God for the beautiful blessings of faithful prayer! Thank you Ken, Lauren Lewis' daddy for coming to visit today! This is a family who loves the Lord and we are so blessed to have crossed paths with them! Visit Lauren and her beautiful blessing at
www.caringbridge.org/visit/lauren.
Madelyn got to see Grandma Sherry, Grandmonna, mom, dad and Tyler before going to sleep! I was able to get some rest all day while Tyler and my mom headed back to Carroll Co. for the weekend. Thank you Mom and Tyler for going to our apt and doing major cleaning for our arrival home! I know you guys worked so hard staying up late to do this for us!!! Boy, what I wouldn't give to not have carpet because of Madelyn's damaged lungs and sinis issues! If it were our home-it would already be ripped up!
Madelyn woke around 8PM and her and I played with a tiny little magnetic doll and strawberry house set! She thought it quite amusing to show me how that doll made the little gate open but without the expression! It was all she could do to lift her little arms as they just shake trying to play or put her paci in.
She is wearing these special boots that PT brought for her to wear to prevent drop feet and she got upset when dad was about to put them on and he told her that it was important for her to wear the boots and why.....well come to find out-she finally told him SHE wanted to put them on! If you know Madelyn, you know that is so her not needing any help to do anything! Well our little Miss Independence did need some help when she figured out she had no strength to move-bless her heart!
She has been sleeping since 10pm but is now up watching Alice In Wonderland! She says she is not hurting at all! and says she is comfortable! Why shouldn't she be...she's on a $50,000 bed!!! She is actually laying at the foot of the bed since her little body fits right in it! The mattress is made of sand and water which when turned on the water comes up through the sand creating the most relaxing and soothing little ripples on the skin! We call it her Luxury Day spa! It is supposed to help lessen breakdown of the skin!
So what next? Not sure! I believe they will keep her for observation for a few days at least. She still has her NG tube in and ART line in her arm as well as a catherter and a femeral line in her leg. We just need her to cough and get her lungs back to being strong this is our prayer!
We pray that the anti-body she did receive was effective on her disease and that as she is recovering and thereafter her disease not gain any ground.
We have all scans scheduled for next week-Feb 6-10. Please join us in praying for CLEAR SCANS and NO SIGN OF CANCER!
We love all of you and thank you so much for the kind words in our guestbook, they mean so much to us!
Love Brandi
Thursday, February 2, 2006 4:27 AM CST
UPDATE: 12:00 noon
Well, much sooner than expected but celebrating a WIN! Madelyn was extubated at 11:30AM thanks to OUR HERO Mr DOUG!!! He is the respiratory therapist who was Madelyn's Hero in getting that tube from her throat!! All her vitals and stats look great! She is resting at the moment!
UPDATE: 10:00AM
WE HAVE ALADDIN!! Thank you miss lisa reilly, who brought it to us this morning. They have lowered madelyn's breathing settings to zero on the machine so she is breathing completely on her on. She is still on the machine though just in case. They have let her breath on her own now for about an hour and have drawn a blood gas to make sure she is exchanging gases on her own. If that comes back ok they will shrink the balloon in her throat that seals around her breathing tube to make sure air will leak around it. If this happens this means that there is no swelling and her throat won't close up if they take the tube out. Madelyn is needing to wake up alittle more also, so it will still be a while before getting off vent.
Thurs, Feb 2, 4:27Am
Good Morning!
It is raining here in Memphis as I look outside our third floor suite at the Jude but it's not looking gloomy on the inside!!
Madelyn is still on the vent but her vent rate is way down from 25 to 10 in one day!!! Which means the machine is breathing only 10 breaths while her respirations are stating around 25!! She is breathing over the machine and her oxygen levels are 100 percent!!
She has woken many times yesterday and through the night with her eyes wide open looking up at us! We can ask her yes and no questions and she will nod her head! It's nice cause she can tell us if she's in pain which hasn't happened but once! She has even told us she wants to watch Aladdin which I was unaware that she even liked but when dad went through all the movies he had picked out for her she said no to all and her little mouth opened to speak the words Aladdin but with no sound and when he ask if that was what she said she nodded her head up and down! MOVIE ALERT: Anyone here at SJ must find Aladdin VHS and bring it to our room!! We have checked carts, cabinets and other floors and there has been no sightings! Thanks! We will be keeping Miss Amy and Mr Johnathan from Child Life busy real soon!
Another time at about 2AM Madelyn woke in distress and I went through all the "are you hurting?", Do you need to be moved? etc and she was trying to tell Nurse Perry and I something and all of a sudden it was "I want daddy!" I am getting good at this lip reading so I ask if I could leave and she nodded yes and within seconds daddy was there and not too long she was fast asleep holding his hand! Certainly Daddy's Little Girl!
She has just been doing awesome today with not crying and biting her tube! Seems very comfortable I might add! Today is the big test-they are going to wean the sedation meds like Dilauted and Versed so that she can wake up more! It will not be much longer before she's off that vent! Please keep praying for a smooth transition!
Just some news to share, not only is Madelyn off the hu14:18IL-2 study permenently, they have stopped the study completly across the nation until further notice. Apparently, according to our doctor there is another little boy (not being treated at SJ) who has similiar life threatning side effects ie (leaking capillaries)and have stopped the study until they can determine whether Madelyn and his case are directly related to previous respiratory infections. I believe however that children who have started round 1 will continue with their treatment!
We will update with any changes today I promise!!!
Love to all,
Brandi
PS I want to say thank you to a very sweet and kind nurse in La who signed our guestbook giving us advise on extra TLC for Madelyn! Though they do turn her every 2-3 hours with pillows etc I had never heard about keeping the feet propped off the bed! We do exercise her feet regularly for drop feet and use shoes 2 hours on one hour off, lotion her down, work her arms and legs, keep her lips and eyes moistened, sleep in shifts keeping watch over her, sometimes I think the nurses think we are crazy-ridiculous and they probably talk about us when we leave HEHE but these are issues that are very important to us in taking the best care of our girl and we are thankful and blessed for the advise! Thank you!
Wednesday, February 1, 2006 5:41 AM CST
Day 16 in ICU/Day 12 on vent
Our little princess has been doing so very well adjusting to her lowered vent settings over the past couple of days!Praise God! She must be loving her $50,000 air bed they brought in the other day! St Jude rents it since it's so expensive! It has these tiny air bubbles that vibrate inside the matress. It feels so wonderful to touch I can only imagine what kind of beautiful dreams she must be having being so comfy on her belly!
They have completely taken her off the paralyic that keeps her from moving and the pain meds are being lowered. She became aware for dad and grandma Sherry today while I was resting in the parent room! Dad said they had to give her a dose of phenolbarbitol so that she could go back to sleep. They need to wean her slowly and allow her to wake slowly for her lungs to start functioning on her own before excavating her form the vent. Dr Raja thinks WED OR THURS WILL BE THE BIG DAY!!!!
Neal took Tyler at noon today to see Narnia after he got his school work finished! He has been doing so well hanging out at the Jude with us for almost 2 1/2 weeks now! He has his PS2 here as well as movies and the computer room/library that he loves to hang out in as well!
Later mom and I got to get out to Wal-Mart in W. Memphis, AR and then get dinner to bring back to the Jude. It is only the second time I have been out since we were admitted on January 16!
We are all doing well-just anxiously waiting for that little girl of ours to be awake and well!
-Please pray specifically for her lungs and kidneys to be restored.
-Pray that her lungs work effeciently and effectively on their own.
-Pray that her organs not be further damaged.
-Pray that the severe bed sore on her bottom heal quickly and completely.
-Pray for Madelyn's complete healing here on earth, that God will allow us to continue taking care of His child that we so dearly love.
-Pray that through all of this God's name will be glorified! Amen
Love Brandi
Tuesday, January 31, 2006 1:05 AM CST
I am certainly behind on our many much deserved thank yous over the past 2 weeks so I want to take this time to let you know how much we appreciate you!
Mark & Mylissa Horrocks-parents of SJ friend, Bella-visit
Bella-for your beautiful picture for Madelyn
Tonya Nason-mom of SJ friend, Brent-visit
Stacy Raburn-mom of SJ friend, Jake-visit
Benita Lewis-mom of SJ friend, Lauren-visits, financial gift and sweet picture for Madelyn
Miss Jenny-those wild pink pj's that is so Madelyn and the sign and crafts!
Miss Connie, Miss Terri and nurses from the 2nd floor-new "pink" shoes for Madelyn-she will love them!
Miss Donna and Jimmy-Wizard of Oz bracelet and purse for Maddie, and visits
Angela & Jamie Summers, parents to SJ friend Jonathan Summers of Sharon, TN-visit
Mr Horace, Miss Katy from recovery, Miss Tracy, Miss Nicole, Miss Sandy, Dr Hartford for your visits!
Faith Baptist Church-Cordova-Vickie and Ronnie-thank you for the KFC meal and the prayer bear for Madelyn!
Sara Barnes-visits
Allison Barnes-visit
Barnes Family for the grilled chicken, potatoes, beans and desserts prepared for us!
Miss Anna-thank you for the relaxation gift and visit!
Angela Pitre-mom of SJ friend, Landon-visit
Karen Paschal-package and balloons for Maddie when she is up and at em!
Robin Glisson-visit
Melinda Winchester-teddy bear fru fru wand and sunflower headband for Maddie~thank you for visiting & wanting to meet us!
Lisa Reilly and Christina-thank you for the spaghetti, nachos and snacks you provided for our family!
Peter Duncanson and wife-father to SJ angel Steven, thank you for your visit
Emily Lovell-my best friend from Nashville, thank you for visiting & organizing the magnet drive for Maddie!
Nancy Mills-mom to NB SJ angel Ali Mills, thank you so much for the BBQ and fixins for our family!
To my mom, Neal's parents, and his sister and kids thank you for staying by our side here at the hospital sleeping on couches and air matresses! What a blessing to have such wonderful friends and family! The kids and Tyler have been able to enjoy some good times playing together!
Thank you so much for all the phone calls, guestbook entries, your thoughts and your prayers for our family! We love you all and BELIEVE that God is working on Madelyn's complete healing!
Again, THANK YOU from the bottom of our hearts for spoiling us with LOVE!!
Love Brandi
We will have Madelyn's Rainbow of Hope page to view soon! It will be an inspiration of Hope and love including Madelyn's friends sites as well as many photos! I will add it as a link below when it is open! We HOPE you'll stop by!
Monday, January 30, 2006 12:04 AM CST
UPATE: 10:15pm
everything is still stable. Madelyn did get her new bed today that is specifically designed to help prevent bedsores. that is all that has changed today
Madelyn has had an uneventful night!! She had an X-ray this morning which is showing improvement from the morning before! She has a really ugly sore on her bottom that started out as a large bruise and then formed a blister and ruptured. She also has a slit in the upper crevace of her bottom that took many months to heal after the Nov 04 incident but has now opened back up from laying in the bed. They are red with black areas of dead tissue. They put a heat lamp to it while she still lies on her belly and it has formed a scab. They have put a Duoderm bandage on til tomorrow and will check for improvement then.
Should it not heal they will have to cut the dead tissue and they have even discussed skin grafting but this will be after she recovers from this and hopefully will get better in the upcoming days! Please pray for this to heal so that this proceedure would not have to happen!
Her vitals all look good and are stable with a slight up and down of bp. She is off the Dophamine again! She is still on the antibiotics, TPN (IV nutrition), Lipids, the paralytic and steriods. They give her a bolus of lacex this morning to help with urine output and also a bolus of potassium in the night.
Her o2 is down to 30 percent which is how much oxygen the machine is suppling her but she is getting 100 percent intake! The peep (pressure) is down from 10 to 6 today!
Talked to Dr Raja today, we are just going to wean Madelyn very slowly! And the steroids will be slow to wean as well! She doesn't like but for one thing at a time to be removed or lowered!!
Will update later in the evening!
Love Brandi
Sunday, January 29, 2006 3:24 AM CST
UPDATE:8:14pm
STABLE
I am trying to absorb what all has been going on this past week and the past 24 hours of going septic and back sliding. I was looking so forward (naturally) to her getting off the vent today as planned earlier yesterday morning and it just consumes me how things can change in an instant.
She looks so peaceful and much more comfortable laying on her belly! Her hair is growing thicker day by day~I can't wait til she gets up and sees how dark it has gotten! She is so beautiful laying there as I sing Rock a Bye Baby and Jesus Loves Me to her and one of her favorites she likes to sing is This little light of mine! On several occassions we would be sitting in church singing and Madelyn would belt out Jesus Loves me as she held her hymn book no matter what anyone else was singing. Bro Joe would just look with a smile and it was just understood that it was the sweetest thing in the world and that it was ok!
Two years ago now we arrived at St Jude with what we hoped would be a misdiagnosis. Her little body just weak and tired in my arms. I was now having to carry a very sleepy and lathargic child around for the past couple of weeks. We had blood work done and I will never forget being in D clinic with family and Bro Joe, our preacher and Dr Hartford walking over to tell me that Madelyn needed a blood transfusion. Talk about fusion~I thought my head would explode with my heart. I begged her to let us get blood from one of us but with a hemoglobin of just 4 she said there was no time for that process to take place, she needed it now and she was going to be getting much more than that over time. My world started shattering right there. I felt like the only one in the room with her at the time but for the people there I can't imagine the pain I must have created all over for their poor souls. Our sweet girl got her first of now over 30 transfusions that night in the Med room and stayed our first night at the Grizzlies House hoping and praying they got it wrong as we watched our two year old play with her little arm in an IV splint. The next day on Friday the 29th was our Bone Marrow biopsy to confirm her diagnoses. Dr Furman was pretty cut to the chase, her prognosis was 25 percent. Neal and I spent the night holding on to each other as if we might fall to the floor if not and praying that God would get us through as we looked out our top floor window overlooking the bright red lights that read ST JUDE CHILDREN'S RESEARCH HOSPITAL. I was trying to soak it all in and trying to believe this could not be happening to us. I had many heartfelt conversations with God. I guess I will never get those small details from my head.
She has been through so much her little body has over the past two years. Only now to see the side effects of this horrible disease and the damage that it causes. For the most part she has tolerated much of the abuse that goes with her treatment. We've come so far since all that we'd been through in 04. 2005 is just a blur. Our trip to Disney stands out most of all and spending the entire summer with our friend Brooklyn was a blast! We spent most of our hospital time in the Med room getting a milder chemo than normal that was keeping her stable if nothing else and just a couple of times inpatient with a higher dose chemo. Once inpatient with fungal infection but in all it seems as if a blur was really a good thing without tramatic dates that stick in my head as in 04.
She has been through many changes physically. I look back at photos of each year at the same time and you would swear it was a different child. She went from black soft curls that hung to her shoulders on her 2nd Bday to a swollen face bald 3 year old the next from all the steroids and chemo. She is still so beautiful, she was a beautiful bald little girl and her little personality...whoa, let's just say she's one of a kind! Girly but very fiesty! She isn't afraid to tell you what she wants and how she wants it done that's for sure! She plays so intently and so creatively. I am so ready to see this brave little girl playing again! She is so sweet always wanting to make something for someone else! Crafts are her favorite things when we are inpatient except for Wicky stix...she doesn't like those! They make her hands sticky and that's something she has never liked!
Our journey thus far has brought more tears of pain than anyone should ever have to endure in a leftime but it has also brought us joy that we would have never known before. Our God is our provider, we owe it all to Him for sure. We have been blessed at all the friends we've made over the past couple of years. The complete strangers that come to our rescue in times of need! We've lost so many friends here, it simply does not seem fair or natural for that matter. I can't even go there.
Madelyn is such a little pioneer here at St Jude. Not the title to wish for your child but the hard reality that comes with cancer. A first to use Temozolomide in Dec 04, a chemo used only in adults was now a phase 1 study here at SJ. Her cancer remained stable using it with Irrinotecan throughtout 2005. I hear more kids are now on the drug and doing well! A first to start the antibody hu14:18IL2. I believe it to be an advancement in immunotherapy treatment that will go a long way but Madelyn has this issue with her lungs that were previously damaged from transplant. I found out tonight that she is the first to use this new vent they have her on. Instead of just a pressure control vent it is a pressure volumn control vent that also has a mode to deliver Heliox and combination of Helium and oxygen that can get deeper in the lungs to release Co2! However, that mode of it she has not used since her Co2 is becoming normal again and they are very happy with how she has reaponded to this new vent! She is doing fabulous and I am so very proud of her! It just breaks my heart she has to endure so much, I want her well and I know God has her cradled in His arms helping her little body rest and recover!!! Alittle R & R goes along way!! We may have a setback but we are looking forward to the beautiful sound of her voice asking, Where's my paci's?
We have so many to thank and I will do that soon but for now I just want you all to know that we appreciate all the prayers, love and concern for our family.
Love Brandi
PS Madelyn has had a very uneventful night! Praise God! We will update later in the morning/afternoon!
PSS Received kisses all the way from Canada last night! Thanks for all the kisses in the wind she can get!
Saturday, January 28, 2006 5:29 AM CST
UPDATE 7:54PM
The great doctors and nurses of st. jude hospital have gotten madelyn back to a stable state. Her blood gases are attempting to reach that normal range once again. We are still back up on about the same settings and medicines as what we begun. Dr. Raja seems to think that she needs these steroids on a daily basis and ween her very slowly instead of three big doses and then quit cold turkey, so this is the what they are going to do. Now we begin again the journey of weening the vent and the meds very slowly.
UPDATE 4:06PM
A yeast infection has been found from the cultures they drew this morning. It was found in the bed sore on her bottom. This is probably the main cause of Madelyn's problems. Even though they found an infection they still must continue the steroids because the foremost problem is keeping her lungs from anymore damage.
Update: 3:30 PM
URGENT PRAYERS NEEDED FOR MADELYN
Dr Raja is here and we are so very thankful for this. He has been so attentive to Madelyn's needs more carefully and is so very aware of her issues due to having her before in 04. It's like he knows how Madelyn reacts and works so to speak and for this we are at least comforted. However, he just took us aside to show us Madelyn's X-rays from 5 am to one they just did and in just 6 hours she is "going south" in his words. Because of the fevers there may be an infection so they now have her on 5 antibiotics, Vancomycin, Tobramycin, Merapenium, Cephimime and an anti-fungal. Nothing has grown from cultures. They have adjusted her tube length due to her O2 dropping in the 80's earlier. The have started her back on the Sasacacurium, the paralytic. My heart is breaking. Dr Raja after looking at the X ray seems to now think it could be inflammation setting up again since her (number that measures inflammation is up to 5, normal is 1)and that maybe they have come off the steroids too soon so they have started this back up again however it is a fine line since starting a steriod with an infection could cause it to get worse. We have some family here and my friend Emily from Nashville is here visiting. It has been a long night and I feel it is just going to get longer. I just ask that you please keep lifting Madelyn in your prayers. We believe in God's will and we know that He is cradling her in his loving arms.
Beacause we BELIEVE, we are keeping our prayer warriors updated as best and fast as we can! We love you all!
Love Brandi
UPDATE:3PM
Madelyn has taken even more steps back this morning. She is running a high fever and they have had to go back up on the vent settings as well as her sedation medication. The doctor has told us that this should be just a slight setback and that he still expects her to come off the vent, but that still doesn't make it any less scary. Everyone please continue those prayers, especially now.
neal
Tonight Madelyn has taken a step back. Around 4am her blood pressure went up and her oxygen went down. They had to increase her oxygen level and her respiration rate alittle bit. She seems now to be leveling out and they may try to bring it back down later today. Madelyn is very sensitive to stimulation right now. If you just touch her she will open her eyes and become aware that there is a tube in her throat and this makes her very unhappy. The nurses give her a boost of morphine and versed when this happens to help her relax and go back to sleep. The nurses have asked that only two people in her room and as little noise as possible. This way they don't have to keep boosting her, thus they are able to ween her drugs faster. They say it will probably be Monday when she is taken off the vent as long as she doesn't have any major setbacks. Please, everyone continue the much needed prayers for madelyn.
neal and brandi beamon
Friday, January 27, 2006 4:44 AM CST
UPDATE: 01/27/06 9:25
Sorry we haven't updated today but it has been alittle busy around here. This morning at 9AM they stopped Madelyn's paralysis medicine. She has been opening her eyes and moving her hands. So we have had to watch her like a hawk to make sure that she doesn't try to pull the tubes out. It is so heartbreaking at this very crucial time during Madelyn's recovery, because they have to start weening down her sedation and yet they can't take her of the ventilator either. So when madelyn wakes up she kinda knows what is going on and begins to cry. This is so hard for us to watch. Because of this we have minimal stimulation in our room. We have limited visitors in the room to two and ask that they only whisper. Also we really don't touch Madelyn unless she begins to wake up. Then we hold her hand and tell her everything is ok. We want Madelyn to sleep as much as possible because when she wakes up it is scary for her with a tube in her throat and she can't speak or anything. Hopefully she will be off the vent by Monday but we will have to stay in ICU for a couple more days to make sure everything is ok with her lungs. We will let you know when we know more.
neal and brandi beamon
Day 11 in ICU~Day 7 on the ventilator 
Madelyn has been moving in the right direction! Praise God! They have adjusted her O2 at midnight down to 25 percent and she has tolerated this well! Normal room oxygen that you and I breathe is 21! Her Co2 levels are down in the very close to normal range! They have been suctioning mucous from the lungs and moving her ever so often to keep her comfortable!! We have the greatest team of nurses here at St Jude and you can tell they just love Madelyn to pieces~I feel forever indebted to this place!
Please continue to lift Madelyn and our family up as she continues on her road to recovering.
They are coming in now to do the morning chest X ray!
Love Brandi
PS This is the correct site address for SJ friend Landon who is also undergoing the anti-body.
www.caringbridge.org/visit/landonpitre
Thursday, January 26, 2006 4:49 AM CST
Madelyn is on day 6 now of being on the vent. 
Things have been going pretty smoothly Tuesday evening. She did receive blood and platelets without being premeded which caused her a red face.
I have to tell you now about the sweetest thing that happened around 11:30 PM. My mom, Neal and myself were in the room talking and noticed Madelyn’s blood pressure just kept rising from a mean of 90 to about 110~her heart rate was moving upward and all of a sudden her fingers start to move, her eyes twitch ever so slightly, her tongue moves. Of course Neal is on the PUSH button to get the door opened for a nurse! The nurse comes in then gets a doctor. While the doctor is trying to write an order (still haven’t figured that one out!) Madelyn continues to do things to show us she is here and fighting~her little forehead is turning bright red with white streaks and she begins to cry tears (of course there is no sound) but the tears are flowing and I’m patting with tissue while I hold one hand and dad holds the other while I persuade her to calm down and let her know we are there! Dad turned on her favorite movie Cinderella at a low volume. She then began to try and swallow and looked as if she was biting on the tube occasionally. Her little chest was fighting against the steady breathes of the machine with erratic movements and even trying to cough. I was so scared for her. The nurses came in and boosted her Morphine and Versed. Then soon again with more Morphine as she was mad! Finally the order was done to up the paralytic from 3 to 4.
Our baby girl was showing signs of life and her sweet spirit and we were cherishing every second as we spoke out loud each thing we could see or feel her do! It was one of the sweetest, scariest, numbing, intense and beautiful moments all wrapped in together. Isn’t that something to have all those different feelings at once? It felt like one of those times when you’re having a baby and you're waiting for the Dr to come but the baby is already coming...LOL (I can laugh now it wasn’t fun at the time!)Why that stuck in my mind I'm not sure!!LOL
We just love that girl. She has been through so much. She is such a little fighter and I think she has proven that time and time again! We are looking forward to them weaning her more and get her to where we can hold her again! We are praising God for our wonderful family and friends who have been by our side and praying for us! We owe our moment tonight to God who knew we needed a sign to boost our HOPE and ease our fears! We are smiling tonight through our tears of joy! We are so ready for her to be up & strong again and she will!
The Dr wants to keep her calm and sedated until morning when there is a full staff to handle her situation! The vent pressures still are not at a point of her coming off the vent even tomorrow but she has a very unique way of surprising us all! Please pray for a smooth transition from vent to breathing on her own! Pray that God restore her lungs and her kidneys! We will know more after rounds later in the morning.
Please continue to lift our sweet girl in prayer along with our St Jude friends!
Praise God for clear scans for our sweet friend, Bella Horrocks! Fl/bella
We have a fairly new friend from Louisiana who is now the second NB patient at St Jude to receive the antibody hu14.18-IL-2 He received his first dose today and his room is next to us. Please visit them at visit/landonpitre.
Sorry for being so long winded! Neal is much better at getting to the point! LOL He does such a great job!
Love,
Brandi
PS We have started getting orders for the Pray for Madelyn car magnets! Please note the email address above for orders! Thanks so much to our prayer warriors for your love for our little fighter!
New pics added in photo album!
Wednesday, January 25, 2006 9:35 AM CST
UPDATE:5:30PM CST
Madelyn has had a pretty good day. Her CO2 spiked to about 57 at around 12:00, but then came back down. The doctors where not too concerned about it at all. They have weined her vent slightly. So all in all a pretty uneventful day thank the Lord.
neal and brandi
I awoke this morning to what I hope is a better day. Madelyn had a good night last night. Everything has been real stable throughout the night. The number that they use to check kidney function was 1.3, which is high as I said yesterday, but today it is 0.9. So her kidneys are showing signs of getting better. For this reason they have stop the lacex, a medicine that helps you void urine. They have also taken steps to begin weining from vent but have not started yet. So all in all last night was much better than the night before. Let's all pray that she continues this and does not do anymore of that crazy stuff again. Brandi and I would like to thank everyone for their prayers and support.
neal and brandi beamon
Tuesday, January 24, 2006 6:11 AM CST
UPDATE:Jan 24, 2006 9:30PM CST
The 8:00PM blood gas has come back and it is back in the normal range at 46. Her pH level is off just alittle bit. We have finally settled back down after another long morning of biting our fingernails and praying nonstop that Madelyn would get back on the right track. Hopefully we have turned that corner now and heading in the right direction again. Only time and patience will tell. Keep those prayers coming, I believe that they are working and that God will bring Madelyn through this once again.
love
neal and brandi beamon
UPDATE:Jan 24, 2006 10:18AM CST
After updating this morning I tried to get alittle sleep because everything was going fine. Then at about 9:00AM Madelyn decided to go alittle haywire again. Brandi woke me up and said that her CO2 was back up and her pH was falling. They give her some tham, a medicine to raise her pH to a safe level and to help lower CO2 to 57. Also they went up just alittle bit on the pressures of the vent. Her kidney marker is the same as yesterday, which is good because it is not going up. Now if we can just get that number to start trending back down. I want to thank everyone for their thoughts and prayers for Madelyn and ask that you please continue.
love
Neal
It is 4:30AM and tonight was kind of an eventful and nerve wrecking night. Madelyn’s CO2 levels went off the charts again. Brandi came in and woke me up at about 2:00 AM and said that they were doing an x-ray. The doctors came in and examined her and decided to manually bag her to see if they could lower her CO2 levels that way. After ten minutes or so of bagging her levels had came back down to 97, remember 40-45 is normal and above 119 is off the chart. After seeing her CO2 drop, they decided that they would go ahead and switch back to the normal ventilator and try and see what it does. Also in the process they seem to have loosened a lot of “gunk” in her lungs because they are having to suctioning her out several times. I hope that it is just her body letting them know that it was time to go to the normal vent. We are now just waiting to see what her next gas levels will be at 5:30AM.
It is now 5:45AM, Brandi is sleeping and Madelyn's CO2 has came down to 68. She is doing much better now then she was six hours ago. Praise the Lord that she is doing fine now and that she is once again on the right track. Please continue to pray that Madelyn will stay on the path that she is on and once again be able to get up and play and do all the fun things that she loves to do.
Love to all
Neal
Sunday, January 22, 2006 6:00AM CST
UPDATE Jan 23,2006 10:30PM CST
Madelyn has taken a couple of steps back this afternoon. First her CO2 has went up from the normal range of about 40 to 57. The nurse is informing the doctor now of this. Also there is a marker in her blood that tells how well your kidneys are functioning and the closer to zero the better. Madelyn's has been slowly going up since last Tuesday and this tells us that the kidneys are not functioning as well as they should. The doctor seems to think that because this starting before the vent that it is related to the antibody therapy. Her kidneys are putting out a good bit of urine just not as efficient as a normal kidney. That is all we know for now. We will update again soon.
neal
UPDATE:Jan 23, 2006 10:00AM
This is Neal, Madelyn's dad, and I thought I would just share the ray of sunshine that we recieved last night. At about 1:00 AM the doctor was in here and respiratory came in and handed her a piece of paper. The paper said that her CO2 levels were down to 30 which is about 10 less than normal. The doctor said that this meant that we were over ventilating her which was not bad but it meant that it was her body telling us that it was time to start wiening her from this and make steps toward the putting her on the other ventilator. They said that this process may happen tommorrow if things continue on this path. But this doesn't mean that she is still not critical because she still has to be weined from this other ventilator. Dr. Furman came in this morning and confirmed that Madelyn would be off the protocol since she recieved the steroid treatment. He also said that with this severe of a reaction he would not of given her another dose, not even a half dose. He said that we need to get past this first and then we would do scans and talk about were we go from here in her treatment. Please continue to pray for Madelyn.
love
neal
I think I can, I think I can…..
Well it’s 6AM and I’ve had the night shift of watching, waiting and praying over our baby girl! I did manage to get about 6 hours of sleep in yesterday evening before 9pm and 8 hours this morning after staying up all night. We have had our family and St Jude extended families here with us over the past few days which has been a huge comfort to Neal, Tyler and I! We have had many of our Drs and nurses from the second floor to visit which reminds us how very special our girl has meant to them! Thank you ladies for the special gift brought up for Madelyn! Beautiful Blessings is what I like to call it!
When Madelyn was placed on the vent we moved to a bigger room-however we lost our attached parent room! Now our parent room is down the hall! Tyler has been enjoying Spencer, Reilly and Cade (his cousins) being here to play games and play station! He has had many questions concerning Madelyn and we have explained best we can and he seems to understand and is doing well!
We are not out of the woods but it is all about the BS here-baby steps! I am going to try and explain what is happening the best I can without trying to confuse you:
This Oscillating vent Madelyn is on makes her respirations 300 times per minute compared to the just 40 times on the conventional vent. It has the panting effect that is giving quick short breaths which distributes the oxygen more efficiently throughout her lungs. It is gentler for Madelyn’s previously damaged lungs. It is very loud sounding like a locomotive saying “I think I can, I think I can, I think I can”! She will have to be weaned to the conventional vent when possible before coming off completely.
Apparently what the Dr thinks is this: Madelyn’s lungs have had some prior damage due to high dose chemo-Busulfan from transplant. She has been on the vent twice before in Oct and Nov 04 (seems like yesterday) thus she has some scar tissue on the bottom of the lungs. An Xray however only shows fluid that is distributed over the lungs. I am assuming that scar tissue does not show on an X ray or CT since we’ve had several over the past year and a half thus making it difficult to know this could have occurred.
The antibody she is on hu14:18 is also paired with a substance called Interleukin 2 or IL-2. Our bodies produce small amounts of this to boost the immune system to fight infections, diseases, cancer etc. In a lab they can make IL-2 and the body is able to tolerate it in much higher doses-well not Madelyn apparently! She tolerated the first round very well with minimal side effects however this round is different-I have said many times that what one tolerates one time may not be another, same goes for what one child tolerates or does not tolerate may not be the same for another! I have learned from our experiences here at SJ that each and every child tolerates drugs, side effects etc so differently.
Anyway, the IL-2 has a side effect of leaking capillaries. The capillaries become more porous and the fluids inside leaks into the lungs and body. Since her lungs are damaged it makes it harder for her to use them on her own with this high dose substance.
Madelyn has had a Foley placed for urine output as well as an arterial line to check blood gases and another central line in her leg for all the meds needed. The nurse checks the blood gases every other hour to see how much of the Co2 is in the lungs. Normal is around 45. She started at 105 and slowly has been coming down and is now at 41!!! This is good! PH levels need to be 7.4-7.5 and Madelyn’s is now at 7.25! This is BS- Baby Steps!!!!
Madelyn is on the following meds:
Dopamine for low blood pressure weaned from 12 to 3mcg/kg/min
Epinephrine also for low blood pressure weaned from 0.07 to 0.03mcg/kg/min
Morphine for pain at 1mg/hr
Versed for calming /amnesia 0.5 mg/hr
Lasix for extra fluid 1mg/hr
IV fluids hydration 25ml/hr
Cefepime antibiotic 960 mg
Solumedrol steroid to help boost a substance in the lungs 75mg
Rantidine/Zantac stomach acid 14mg
Vencronium paralytic to keep her from moving.
We know for sure from Dr Furman that should we do another round of the anti-body (protocol states you can do up to 10 rounds) that Madelyn would have to have a lower dose. However, now that we have had to give a steroid to get over this hurdle Madelyn is fighting, she will most likely be off the protocol completely as stated in the protocol. I have not specifically talked with Furman about this yet ut this is only what the ICU attending thinks. I have many mixed emotions running through my mind about this which I will most certainly speak of later I’m sure but at this point I can only be concerned with the present and current situation at hand and that is getting our baby girl back to up and playing! We are covering her in prayer and we are talking to her and playing lullabies on the CD player. We are just taking one day at a time at this point. We cannot stress enough how critical she is and that she is in need of being lifted in prayer. We love the Lord and praise God for the blessings of having our children. We are blessed to have the family support and friends that we have. Each and everyday brings new challenges but also new strengths and hope. Please be with us in spirit and prayer and for this we thank you!
We want to thank Mark Horrocks for being with our family over the past several days. Thank you for updating the site when we could not or can’t. Miss Donna and Miss Sara Barnes. We love you guys and think of you as family!
Love to all
Brandi
PS we have Pray for Madelyn Magnets for sale to help our family who has been here at St Jude’s for now almost 2 years. They are 5.00 each and .50 of every magnet is being donated to Habitat for Hope! Please email me at prayformadelyn@yahoo.com and I will send you the address to send your check and number of magnets! For multiple orders please feel free to create a makeshift form and collect the money from each then we will send all magnets at one time to one person to distribute. It is a 6 inch purple ribbon magnet that says Childhood Cancer Awareness down one side and a center heart shape magnet that reads Pray for Madelyn. 2 in one! I will post a picture as soon as I get home to my scanner! Thanks so much!
Friday, January 20, 2006 6:42 AM CST
UPDATE JANUARY 21,2006 9:55 PM cst
This is Neal, Madelyn's dad. Brandi has finally been able to sleep for almost four hours now. The doctors have madelyn stable on the new ventilator, which took 3 and 1/2 hours before we could see her. Dr. Morrison, the ICU doctor, says that he is pleased with her progress today. Her CO2 levels have finally reached a safe level and they have started the lacex drip. She is voiding urine well, which is very good. Madelyn's blood pressure is up and good. They have begun her on a steroids that she will get one dose a day for three days. This is similar to what she got in November 04' that we think turned her around then. This is still going to be a very rough journey for Madelyn and she is by no means out of the woods yet but at least she is heading in the right direction. Once she is able to get off the oscillatory ventilator she must be put back on the normal ventilator and weined from that one. Me and Brandi ask for everyone to continue their prayers for Madelyn because I know that God hears them and he will answer them in his own time, we just have to be patient.
love always
neal and brandi
UPDATE 1:15 CST
PRAISE REPORT
Miss Madelyn has made the transfer from he existing vent to the new vent. Her blood pressure did drop and it did take about 2-3 hours for her PH levels (CO2) to balance backout. The doctor said that she is stable again and this is a GOOD thing.
She still has a long road to go. Pray that her lungs would continue to heal and be restored. Pray that she can get off the vent in a reasonable time. Please continue to pray for strength, peace and hope for Brandi and Neal and their family.
Psalm 33:20-21 We wait in hope for the LORD; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name.
God is good!
mark
UPDATE JANUARY 21 - 7:10 AM CST
This is Mark again. Madelyn remains stable but is improving very slowly. In order for her condition to improve more, they will likely have to change the type of ventilator she is on. The different type will allow her to breath more efficiently. If they do this, it will be in the next few hours. If they do it, there will be a very critical couple of hours during the transition. Please continue to pray for God to give the wisdom the doctors need to make the best choices for Madelyn. Pray that God would continue to strengthen Neal and Brandi. Pray the Lord would hold Madelyn in the palm of His hand and heal her little body.
I'll keep you posted if Brandi cannot. Keep the faith!
UPDATE Friday, January 20 11:00 PM CST
CALLING ALL PRAYER WARRIORS
This is Mark a friend of the Beamons posting for Brandi and Neal. Little Miss Madelyn has been placed on a vent since 4:30 this afternoon. She has been having trouble breathing most of this morning and her oxygen levels would not recover. Neal called me at 9:30 to tell me that her lungs have been damaged from previous treatment or from being on the vent last time. It is very crucial for Madelyn to get off the vent as soon as possible. The longer she is on the vent the longer and harder it may take for her to get off the vent.
Here are the prayer requests:
Pray that the Lord would touch Madelyns body and restore her lungs.
Pray that she can get off the vent as soon as possible and that she will breath on her own without any oxygen problems.
Pray that the Lord would give the doctors wisdom to correctly handle the situation.
Pray for strength, peace and HOPE for Neal & Brandi ( and the family members that are here and home )
Pray for the Lord's mecy upon the Beamon family
Pray that God would restore Madelyn's health.
Scripture says that "Blessed are those who trust in the Lord." Let put our trust in HIM and BELIEVE.
Brandi said she would try to update later and they thank you for all your prayers!
Update: Friday January 20, 3:00PM CST
The x-ray had come back and it looks a little worse than it did yesterday. The doctors say that the next few hours are very crucial as far as rather she goes on the vent or not and what they need to do next. They have given her some more lacex and she has used the potty some more. The doctors said that we just need to take baby steps today and not over do the lacex because if we give to much and she looses fluid too fast her blood pressure will drop and they will have to give her dopamine, which helps to keep blood pressure up and once given it has to be weined off. However the doctors said this is still a better alternative than putting her on the vent. She is still sleeping, but it does not seem like a restful sleep. We will keep you updated.
Friday January 20, 6:42AM CST
Today should be the day to go home if we were comparing to last antibody treatment but that won't be the case this time. I have been up around the clock with Madelyn with an occassional nodding off with my head on her bed and body in the chair holding her little hand. Dad and Tyler went home but came back around 1AM after Madelyn woke wanting her daddy. They have rested in the parent room which is attached to her room with a window looking in.
They got started with the blood around 3am. She has just moaned all night and her chest just working overtime. I would lay my hand on her chest and my heart would just start pounding it would make me so nervous. It is very hard to lay there watching her struggle...We called the Dr in before the blood got started at one point but he seemed to think she would do better after the blood.
Well after the blood, Nurse Kena and I noticed the louder more stressed sounds she was making and called the Dr in right away along with respiratory who gave her an albuterol treatment to help open the airway. With the lights on we noticed the rash to be faint but now everywhere from head to legs.
The Dr just came in again and they have ordered another X-ray of the lungs and well get results within the hour. They are going to give another dose of Lacex. He said, there is not much more to do beyond incubation besides giving the lacex.
Please keep praying for our precious girl to recover quickly. I will update soon.
Love Brandi
Thursday, January 19, 2006 7:53 PM CST
Round 2/Day 3 hu14:18IL-2 anti-body
The morning started smooth. Madelyn slept well throughout the night. 3 hours into the anti-body Madelyn's oxygen saturations started dropping. Normal is 99-100, hers was in the 60's. Then her respirations started to increase in the 60's as she was working harder to breathe. The doctors were then in and out most all day watching as she lay there with eyes closed and her little headset of oxygen around her head. It looks similar to what a pilot or rock star would wear.
Her bp had gotten to 67/38 but is now stable at 77/44 there abouts, low but normal for her!
They did a chest X-ray and it shows pulmonary adema which is swelling of the lung tissue in other words she has fluid collecting in the lungs.
Dr Furman, Sandy and Dr Hartford have all been in to check on her as she flirts (so to speak) with the ventilator. Dr Furman stated this fluid buildup is a side effect of the IL2 and is not an allergic reaction! Praise God! He also believes it to be a good sign that the anti-body is in there working and doing just what is expected (also stating that's why we are in ICU!) I feel much better knowing this!
The plan: They have given lacex to remove fluid buildup. She is getting blood in he morning. Her hemoglobin is 9.3 but they want it over 10 for cases such as this to help keep fluids in the capillaries instead of leaking into the body. The protocol states that giving blood too close to the anti-body infusion can cause the condition of leaking capillaries to worsen so thus we will get the blood in the morning!
Also on day 2 they started an antibiotic, Cefipine due to the fevers and is now on 24 hour scheduled Tylenol. She is also taking an anti-inflammatory, indomethasine, by mouth every 6 hours which is part of the protocol. She gets Benadryl and Dilauted for pain when needed.
She is now resting comfortably breathing shallow with an occassional moan and wakes briefly to find her paci's and wants to know where Mr Mark went!
Please continue to lift our girl in prayer with us.
Pray that the anti-body is working to rid her body of tumor cells.
Pray for no allergic reactions.
Pray that she is able to rest comfortably tonight.
Pray that the side effects be just enough to heal but not cause further damage to her little body.
Thank you Mr Mark, Mr Horace and Mrs Tracy for visiting us today! Thank you for the phone calls and words of encouragement in our guestbook~they mean so much to us!
Love Brandi
Wednesday, January 18, 2006 2:28 PM CST
Round 2/Day 2 hu14:18IL-2 antibody:
SEE EVENING UPDATE BELOW:
The anti-body got started today at 10:48am and will conclude at 2:48pm. I would usually wait and update the days events later in the day but due to Madelyn's pain I am jumping on here so that our prayer warriors will know that Madelyn needs your prayers. About 3 hours into the anti-body(same time as day 1) she started having belly pains. (More severe today)She doubles over and just cries out for daddy to hold her while we were playing Monopoly Jr and again while doing sand art. They give her another dose of Morphine and she was still hurting so they got the ok from Dr Furman for Dilauted. This seems to be working as of about 10 minutes ago she has been resting with some grunting. Her heart rate is rising at 170 (yesterday it got to 215 at one point). She woke briefly to say she only had two paci's and needed another and fell back to sleep! Of course she now has 3!
Mr. Mark (Bella's daddy just stopped by, thank you Horrocks family for your love and concern for our family) He is in town for meetings related to Habitat for Hope which he founded. Please lift him in prayer as God uses him as a vessel to teach others of this God inspired organization.
I will update more this evening.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
UPDATE FOR THE EVENING 11:30 PM
Madelyn has been sleeping quiet a bit since 2:30ish today. Expected!
Madelyn did wake up to play for a couple of hours while Miss Donna came to visit all the way from Dyersburg this evening! Thank you Donna & Tabitha and family for the special surprises for the kids!
Also nurse Jenny stopped by briefly with a special surprise craft as well! Madelyn had told our day shift nurse, Falicia how much she loved her long necklace that has her name on it and well it just so happened that Nurse Jenny brought just what she needed to make her very own long beaded necklace! Thanks Miss Jenny! Thanks also for those who have called to check on us! We love you guys!
Madelyn developed a rash on the face and arms this evening, swollen eyes and itching so she's being given Benadryl for that. She developed this during round 1 as well and is most likely caused by the Morphine but is also a side effect of the anti-body. She has complained of back pain and hip hurting this evening. After the pain meds and Bendryl it didn't take long after Miss Donna read to her that she was fast asleep! She has had NO fevers and no grunting since this afternoon!
Thank you to all our prayer warriors and guest book entries! Just one more day of the antibody! Pray for a well rested night and for pain and fevers to be well tolerated tomorrow. Pray for the nurses who care for her that they will be alert, knowledgable and compassionate with her care!
Love Brandi
*This past week was one year ago that Madelyn went on her Make A Wish trip to Disney World! So as a reminder of our great adventure I have re-posted this to the top of our page!
Tuesday, January 17, 2006 6:56 PM CST
Round 2/Day 1 hu1418-IL2 anti-body
Madelyn is doing well! We started the anti-body this morning at 10:25AM and concluded at 2:25PM. Like last time all the neccessary precautions are in place including the Epinephrine for low heart rate and Dexamethasone, a steroid in case her Bp bottoms out, are taped to the wall. These are allergic reactions that we have faced before in the past that put her on the vent in 04, they are extremely scary and life threatning and we pray will not be allowed to happen.
She is being monitored well on the third floor with wonderful nurses! Unlike the first round they have a ventilator ready beside her bed just in case~which sorta flustered me at first since we didn't have this in the room last time but they say it's in the orders and is just precautionary~let's hope this will always be the case!
Also unlike last time, Madelyn has been awake and active since 10am even after having her premeds of Morphine and Benadryl and then again 4-6 hours later! Let's just say the toys and games on the third floor get their fair share of use and washing when Madelyn arrives!! Poor Miss Amy and her volunteers! We keep them extra busy! She has been pretty ill today off and on but I know it's the morphine and all that is working in her little body!
Grandma Sherry and Tyler arrived this afternoon and she loved that! She loves company! Mr Mark Horrocks arrived this evening as well and the first thing she ask is "Where's Bella?" But she did give em' five so I'm sure she's glad he's here regardless!
PRAY FOR MADELYN~
I just want to remind our prayer warriors to please keep Madelyn in your prayers as she endures this second round of anti-body and that she get NO allergic reactions that might hinder or stop her treatment. We love you guys and are so happy you are checking in on us!
Remember also to keep our St Jude friends in your prayers too~
Brent Nason is on the second floor with fever from chemo. Please visit him at www.caringbridge.org/ms/brentnason
Jake Raburn is here to go inpatient to start chemo. Please pray for Stacy and Don to have the peace they need regarding decisions for Jake. www.caringbridge.org/la/jakeowen
Bella Horrocks, pray for safe travels as their family travels to and from St Jude's on Sunday and pray for NO sign of cancer as she will have scans first of the week. www.caringbridge.org/fl/bella
Also Ben Bratten from MS and Landon Pite from La, who are NB friends of ours about to go into the anti-body treatment as well. They do not have sites but I will try and keep you posted on them as I hear more!
Well I have to go for we are about to start the AI party!!
Love Brandi
PS We now have specially designed ribbon magnets in to honor Madelyn and support our family! They are purple (her favorite color) and say Childhood Cancer Awareness down one side of the ribbon and the middle is a heart that reads Pray for Madelyn that actually comes out as a separate magnet for the fridge, office, etc or can be left in place! Like two in one! They are $5.00 each. Madelyn will have another site opening soon that will be linked from this caringbridge page for you to order from! Take care and God bless!
Oh, the # to our rm is 901-495-5303.
Sunday, January 15, 2006 2:27 AM CST
DING, DING, DING...Round 2...
I know, I am slacking on the updates! Rest assured we are all doing very well! I am feeling much better and Madelyn is a handful!! We have spent the past couple of weeks going to Carroll Co to visit with grandparents and cousins! Every night when it's time for bed she was always the last one NOT ready for bed! And in the morning she would wake before everyone saying I wanna get up and go down stairs! She would just go all day without a nap even!!!WOW!
We had the opportunity to do a video shoot with Randy Owen from Country Music group Alabama on Thursday evening for Country Cares! He is a long time supporter of SJ and very sincere!
Madelyn or little Miss Personality had no problem sitting on his knee while coloring! This was so funny...As the 3 kids and him were drawing pics of houses he suggested drawing a chimney and ask, what comes out of the chimney that we can draw? And Madelyn with the biggest smile and as loud and excited as she can says...Santa Claaaaaus! I thought for a moment there with all the people laughing she was going to burst into tears as she looked up at everyone not knowing why they were laughing but she just kept right on coloring as Randy suggested drawing smoke instead! LOL That's much easier I guess!
Neal took her on Friday for labs and clinic and all was perfect!
ANC-1800
Hemoglobin-10.0
Platlets-109
Liver function-Normal!
That evening we ventured to Chuck E Cheese for an evening of fun! She's been wanting to go for so long and because of low counts and all we haven't been since Tyler's Bday in 04 and boy did she have a blast! She couldn't even eat she was so excited!
We are now gearing up for round 2 of the hu14.18 IL2 anti-body!
We have been washing clothes and Madelyn's favorite blankets. Madelyn and I had a girls night out and headed to the mall and Wal-Mart this evening while daddy was at work! We were just "wookin", as she would tell me while she looks through all the Build a bear clothes! She did manage to get a new pink princess gown at the Disney Store! It's funny when she was two and started to SJ, she would not wear a nightgown only pajama pants and "matching" shirt! But now she's all about these long gowns!
Tomorrow/today we will be getting the luggage packed! It seems we take our entire home when we go inpatient! And we bring back more than we take...We will go inpatient Monday PM and the anti-body will start Tuesday! (I know I mentioned the 19th in previous journals but I goofed and just had the dates wrong!) Anyhow, Tuesday 17th (Premier of American Idol just in case you're a fan! We'll be having a AI party in our room but if Madelyn is anything like last injection which I am sure she will, she'll most likely be sleeping all night with fevers, bless her heart. Wednesday 18th, & Thursday 19th will be the 3 days of injection and should there be NO complications, we should go home on Friday 20th!
Please join us in prayer as we pray for Madelyn's next round of treatment to be that of healing to her body.
Pray for NO allergic reactions to the anti-body treatment.
Pray for the Drs and nurses and her parents who continue to care for her.
Pray that this immunotherapy treatment is the healing for the many kids receiving or about to receive this treatment.
For those that may not yet know, our hearts are heavy as we lost a dear friend, Ashley Taylor, 7 year old Osteosarcoma patient on Tuesday evening. Please visit Doug, Valerie, Austin and family with words of encouragement at www.caringridge.org/la/princessashley.
Please remember to pray for all our SJ friends and families! There are many who have lost loved ones, relapsed, starting new treatments, continuing the fight, out of options, rebuilding lives;hoping not to relapse...we are all families yearning for a common goal; Survival! We are surrounded by HOPE and need our prayer warriors at all times!
Live, laugh, love,
Brandi
Monday, January 9, 2006 10:20 PM CST
Swippery jello moments...
Just wanted to let everyone know that Madelyn is doing so very well! I am the only one that's been alittle under the weather this past week but all is well now! I spent Saturday 8 hrs in the ER with chest pains and trouble breathing..they did lab work twice, 2 xrays, a CT and 2 EKG's (all were fine!) and then had to drink this aweful GI cocktail that numbs your mouth and throat! At least I was still able to swallow! I was nautious and sick the entire night after getting home at 11PM and the next morning I got up, cleaned and lysoled the home, washed loads of clothes and for the past couple of days I've been much better! Must have been a bug! Of course, you can't say that to Madelyn she gets really confused at that statement! LOL
I got the flu in Jan 04, while Madelyn was doing all her testing before being diagnosed and it was really difficult since she really needed me at that time! I have been blessed to not have been sick since (I hope I am not jinxing myself just now!) Though now that she has grown to be such a daddy's girl, it wouldn't be as bad but I just love to do EVERYTHING for my babies now! And being sick would mean not being able to care and do for them!
Speaking of that we actually had the sweetest thing happen today! As Madelyn and I were leaving the cafeteria after lunch we were in the hall where the donor plaques are located, I had my purse on one shoulder, a drink in one hand and stickers and Madelyn's [things] in the other and she stops, looks up at me with a grin and arms wide open...as I reached down to pick her up she ask, How you gonna hold me? And of course I always say "very carefully" with a laugh but today I said, "I'm superwoman!" And she ask, how? And I said with a chuckle, Cause God made mommies that way! And she said, "Well, God made me a Superhero!"
I paused for a moment as I had to grasp what had just been said. Her reaction was so quick and right on. I just said, "yeah, I guess he did!" My heart just melted, for a split second I was joyful but sorrowful all at the same time.
OK, OK enough for tear jerker moments. It just makes me so happy to have these precious moments in our life! I can't help but share them! For a funnier moment today while eating in the cafeteria, I found out that jello is swippery!!LOL You an imagine what kind of time we had at lunch with that!!
MEDICAL:
As for Madelyn, she is doing super D duper!! I am so thankful and praise God for such greatness! We had lab last night and clinic today.
ANC 1700
hemoglobin 9.4
Platlets 109
Liver function is normal!
We did have to wait to get the once a month antibiotic, Pentamidine (takes the place of Septra!) today in the Med room. I can't say enough about her quality of life right now! (Well, at least compared to what we've dealt with pre-antibody!)
Plan is to start Round 2 on the 19th!
Please remember to pray for our St Jude kids!
Love,
Brandi
Thursday, January 5, 2006 7:28 PM CST
We still have paci-in-mouth syndrome...
OK so it's official, we are not giving up on the paci's anytime soon! Today, as we were in clinic with Jake Owen and his mommy she had a surprise for Madelyn from our sweet friend, Emma Grace. It was 2 paci's (unused in a package, of course!)At first Madelyn wondered what she would do with them since they were silicone and unlike hers so I told her to give them to her baby dolls but where are they now...in her mouth of course! So it is offical, it doesn't matter what kind it is ~ she's not give'em up! Yes, were 4 years old and putting the paci's in a Build a Bear doesn't sound like such a good idea anymore!
Yesterday, Madelyn started running fever of 101 which we thought was starange since her ANC was 1400 and she has no sign of a cold, etc. Anyhow, as we were coming back home to Memphis we kept checking her temp and by the time we were home it was gone and she was full of energy afterwards! She has been having some stomach cramping and going to the potty several times a day as well.
We had clinic visit today and all seems to be well! They did do line cultures and Dr Furman seems to think the fever may just be the anti-body reacting and doing its job!! (We'll take that anyday!) Madelyn has been doing so well these past few weeks! Tonight when she had to go potty, I was just thrilled as she runs (not walks) to the bathroom! We have been playing with her new CandyLand DVD game in the Living Room for the past several nights and she does all the skipping, jumping, hopping, bending and screams for joy when she is announced the big winner! (She always seems to win!)
The plan for now is to go back on Monday for lab check and the anti-body should start the following week (Day after Martin Luther King day)
Our friend, Chris Burress passed on Tuesday, Please visit them and send words of encouragement their way.
We were happy to see some friends of ours today and they all need your prayers, Cole Tanner, Lauren Lewis, Dalton Corlette, and Jake Raburn. Please visit them and send words of encouragement their way.
I am not sure if I mentioned this but I want to say thank you so much to everyone who sent cards and packages to us over the holiday season! We keep them (cards and who froms!)in a special box and will cherish them always! They will be a great reminder as we look back through them one day of how blessed we are to have the special friends we have made throughout our journey! I wish I could respond to each one individually but please know that we do receive your thoughts, prayers and love for us! Thanks again!
Love to all, Brandi
The picture above was taken at the Picture People! More photos in photo album!
Tuesday, January 3, 2006 8:58 AM CST
Hello to all and to 2006!
Please know that no news is good news! I have been searching for time to update being away from home over the past week and coming home Sunday a week after Christmas! Everything from Santa's cookie crumbs to torn wrapping paper still lined my floors and tables when we got home! Needless to say we spent the past two days cleaning!!
To be quite honest I am also finding it very difficult to journal good, happy times when we have friends that are struggling just to get through the holidays. We were anticipating the Schnexnayders coming for New Year's only to realize it must be hard on them to celebrate along with the many other friends we have met over the past two years who have lost their children and loved ones. We know that we are very fortunate and I count my blessings daily. I praise God daily for the beautiful children that I have and the joyful blessing of having them this holiday season!
I want to take a moment to ask that you please pray for some very special friends of ours who are having a difficult time right now.
Ashley Taylor
Chris Burress
Brent Nason
Madelyn is feeling great and having her best days! We just got home Sunday evening from being at families over the Christmas and New Year's holiday and yesterday all four of us spent the entire day playing! Our apt is lined wall to wall, corner to corner with Madelyn's toys! She just moves from one thing to another playing! We still haven't takin down our tree! Madelyn says "it's beautiful" and she still wants to look at it for awhile! lol So up it stays...for now! Gimmie a few days with no space and down it will come!!HEHE
We had lab check and clinic today and all looks GREAT!
ANC is 1400
Hemoglobin 9.6
Platelets 106
Madelyn no longer needs the 12 hour fluids she was getting at night so that means we are on NO meds and no bag to carry around!! Praise God! I cannot tell you how excited and thankful for what we are seeing with our girl! It has just been amazing to see her free spirit and beautiful, bubbly personality shine through! She and Tyler have been enjoying some fun times together playing with their Christmas toys! It amazes me how well they get along for them to be 8 years apart! (Bless his heart, he gives and takes alot but he's determined NOT to give into getting his nails polished! lol)
We go back on Thursday for lab check then off til next week! Dr Furman is very pleased at how Madelyn handled the first round of anti-body! We pray that it is the break-through we have been waiting for, for many of our friends to do as well! She starts the second round on Jan 19 so to all our nurse buddies and Amy in ICU-look out cause we've got a bundle of energy ready to come play!
I hope all of you are having a blessed day and thank you so much for all the prayers being sent for our girl! We welcome the New year and are hopeful for a complete healing and witness to a miracle!
Love to all,
Brandi
Friday, December 30, 2005 9:22 AM CST
Attn Prayer Warriors~Prayer Alert for Brent Nason & his family~
This precious;God Loving family has received news that no family ever want's to hear...their son Brent has relapsed~we just ask that you please lift this family up to the Lord and visit them at www.caringbridge.org/ms/brentnason. We love you guys!
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It's New Year's time in the city....
WOW a whole week without journaling! This is going to be long so bear with me!!HEHE It is hard to believe it's been 5 days since Christmas! I know I should have carried my new laptop with me but I forget to take it when I'm always hiding it! LOL
Our Christmas eve consisted of being in the Med room until 10:30PM getting platelets! We had been there that morning getting IV antibiotic but then went to get Tyler from Jackson in between waiting for platelets to get ready. There was a bad overturn involving a Tyson semi-truck that held us up on the interstate for almost 2 hours. I sure prayed they were ok. Anyhow, we still managed to get home for the kids to bake cookies around mid-night for Santa!! Dad had been there to have the house and secret stuff all finished!
Finally the kids were able to sleep around 1 AM! We were back up at 5! They were so excited to see that each had their own piles from Santa! Tylers in Green Santa paper and Maddies in Red Santas! She wondered all week how Santa was going to get in our apt with no chimney like we once had! LOL Then she remembered the movie The Santa Claus with Tim Allen! We love that movie I bet we've watched it 30 times this season alone!!
Madelyn was tired on Christmas morning duh, she had only gotten 4 hours of sleep! LOL She sat up against the recliner while dad helped open each and every gift! He paused briefly to open one of his from time to time!
The kids had received some very nice gifts from Borders Book Store this year, where Neal works so the kids could work overtime un-wrapping presents!! Thanks to all of you!! We had so much fun!!
Madelyn was especially excited when she opened her Betty Spaghetty doll she had ask for from Santa and her Hello Kitty Ready Bed from us! Neal had went to 4 Target stores Christmas Eve, Eve night before he finally found and I quote "the LAST one!!" LOL It's true! The Disney Princess one would not do! We were down to the wire I had been in Jacson, TN looking with my mom and no luck! Then that night we all went out to dinner and to both Target's on Gtown Pkwy with no luck. Maddie and I went home since it was late and dad went to Collierville and then to the one on Poplar where he found the ONE!!! Yeah for endurance dad!!!
Madelyn ask Santa for a Mr Potato head also and when she opened a small piece of her Star Wars Mr Potato head doll from Santa, she tried to wrap it back up in a hurry and kept telling Tyler she was sorry, "this is your gift" and when he opened it he gave it back saying no Madelyn I think this is yours! She always likes playing with Tyler's Star Wars men so Santa brought her her own Darth Tator! LOL
Tyler had been wanting this nice (expensive) light saber from Neal's work~he collects light sabers, I think he probably has 25 of them! Anyway, he was so excited to get something that he probably will not even want to take out of the box! LOL
After finishing up presents around 6 am here at home in Memphis we headed to Martin, Tn where Tyler's dad and family live. He opened Santa gifts there too(I always wonder how he manages to get Santa to come to two places! LOL) while we headed to Huntingdon for breakfast with Neal's parents and then to my mom's for late lunch and dinner!
Madelyn received a pair of Gymboree's pink glittery butterfly wings that were absolutely gorgeous with her pink tutu from last years birthday! She has fluttered around this whole week in it! Tyler bless his heart was trilled to finally receive a PS2 thanks to Grandma Sherry after waiting since September's breakin! (He really thought he wasn't getting it after he didn't open it at home!) Thanks to our family and everyone for a wonderful meal and fellowship this Christmas season! Thanks for all the wonderful gifts as well! We love all of you!
MEDICAL:
After a long nap from Huntingdon to Martin, Christmas night we stopped by to see a friend of mine from High school/college, Emily Lovell at her parents home! Madelyn started coming alive playing on an indoor slide and swing set of Emily's neice, Lee Anne!
From that night on she has been back to her self again! It took 3 days for fevers to go away and 4 days to start feeling good! That's one complete week of not feeling well with the anti-body verses almost never with the chemo! It seems with chemo by the time it starts to wear off and her feel like playing it is time for another round. To date we have had 20 rounds of chemotherapy. 6 initial protocol, 2 Topotecan, 1 with transplant, 9 Irrinotecan/Temozolomide and 2 ICE. Whew, I think Maddie and Jake Owen should go to dinner! They would have alot to talk about! LOL Looking back over the past nearly 2 years it amazes me what an awesome God we serve and how he has carried us so far with all we have been through! Praise His name!
Also, Madelyn is eating!!! She has eaten more than I have ever seen her eat! Not just 1/4 or 1/2 of sandwiches but whole cheese and mayonnaise sandwiches!! She has eaten strawberry cloud cake, chips and dip, pancakes with butter and syrup, yougurt, biscuits with strawberry jam, Mc Donalds Cheeseburger and fries, Mc Griddle, mash potatoes...all in 4 days!!! And even while on TPN!
Her hair is getting darker or maybe fuller! It held a bobby pin the other night and she was showing it off!
We had clinic on Thursday and all is well! Dr Furman has stopped the TPN and she is just on 12 hour fluids nightly! Her liver levels were trending up from last week so we need her to keep eating on her own and keep these levels in normal range so that the anti-body does not have to be lowered for tumor sake!
Her ANC is just 500 so on with the mask we go! Physically, she looks great!! And feels great too!! I can't believe I am saying that word because I've never thought she has felt totally great!
We went this week with Neals family to Nashville see the lights at Oprey Land Hotel! They do a dancing water and light show to music every top of the hour which was really neat to see! Madelyn and the boys (her cousins, Spencer, Reilly and Cade) had a fun time playing this week!!
Hope everyone is having a wonderful holiday season and Happy New Year to everyone! Please keep Maddie in your prayers for good eating and the anti-body to be working to a complete healing!!
Praising His name,
Brandi
Friday, December 23, 2005 2:05 PM CST
Hello everyone...
Just a quick update to let everyone know we did get out of the ICU on Thursday afternoon! She seemed to be doing well so we made a trip to Dyersburg to spend the evening with special friends! Thank you to Karen, Dwight, Kyle, Jada and baby Noah for the wonderful Christmas meal with your family! Then we headed over to visit another special friend, Miss Donna Everett! Loved your new Holiday chocolate treasures! Yum Yum! We were so happy to be able to exchange gifts and see all of you for Christmas, thank you all for your friendship! It is very special to us!!
Madelyn did develope a fever last night and was given Tylenol only becuase Dr Patrick told us to since it is known to be from the anti-body. However, she still continued to have fever this morning and since she had lab appointments we waited on the Tylenol and they did cultures this morning! Dad took her in while I tidied up the house for Santa to come!
They just got home and she is not feeling well. She's really tired and still running fever. She's just laying on the couch watching a movie from Miss Donna's house, Grandma Got run over by a Reindeer!
We are not going out anywhere over the next couple of nights though we did want to venture out to see Zoo Lights and the Enchanted Forrest at Pink Palace, we are putting it off. We are hoping she will pick up and start feeling better in time for making cookies Christmas Eve and in time for Santa to arrive on Sunday morning!
Thank you to everyone for lighting Maddie's Giving tree and helping to raise money to fight Neuroblastoma on the Lunch for Life site! WOW! 195 and counting!!! Way to go!!
Gotta go for now, Maddie needs someone to hold her! Please pray for no allergic reactions to the antibody. Pray that it is doing just what it needs to do to get her to a complete healing! Merry Christmas!!!
Love to all,
Brandi
Wednesday, December 21, 2005 11:03 PM CST
Day 3 anti-body (hu14.18-IL2) therapy: (Sorry Mo for late night entries-I hope I'm not keeping you up too late!LOL)
Last day...
Madelyn has been sleeping very well throughout the night! Her heart rate, oxygen level, blood pressures have all been pretty much close to perfect! I would say the biggest difference in her is that the anti-body therapy makes her very tired!
Madelyn developed an all over rash this morning along with itching which had started the night before. She also got a fever. She was pre-meded this morning with Benadryl, Tylenol and Morphine before infusion. She is being given Benadryl every 6 hours but the itching and rash still continue throughout the day. I believe it is from the Morphine. Since the same reaction occurred last year while in transplant. We had not used this drug for the past year but because it is the one stated in the protocol, Dr Furman suggested trying it again that maybe it had something to do with other meds we were on last year but I just hope for next round we'll be able to go back to Dilaudid for pain!
We had a bout of crying this evening after getting her comfort bath, dressing change and change of clothes because the leads that needed to go back on her chest were bothering her itchy skin!
The infusion was from 11:30Am to 3:30 Pm. At 2Pm, she started itching again and another fever. Just wanted dad to read to her as she was getting very sleepy! She finally fell asleep around 4:30 for a couple of hours. Later, she wanted to go out of the room and pick out her own books and movie so we got her out of the bed to walk there and back. It was a slow process but she was determined to do it herself!!
Madelyn has been such a sweet girl! Amazingly different since being off chemotherapy the past couple of months! I am loving her sweet personality lately! She is not near as ill and snappy as before! Oh how I just hope for this anti-body to be the miracle we've been praying about! I long so bad for her not have to take anymore chemo so that her body can rest and that she can continue to live these happy feel good days!! Her hair is growing and she is gaining her weight back! She is looking healthier and so beautiful! I'm sorry I don't mean that in a bragging type way I am just trying to point out that I really think that all the chemo she's had for the past year and a half brought out the bad in her at times and I just want it to all go away so that her inner beauty shines like never before! That's what were seeing these days~just the pure beauty of a child with better quality of life!!
Thankful for brighter days,
Brandi
Tuesday, December 20, 2005 8:15 PM CST
Day 2 anti-body (hu14.18-IL2) update:
Another good day!
Madelyn slept all day and through the night until Nurse Julie came in to wake her this morning! She had to be re weighed due to the weight # that was way off from the day before! After lifting her out of the bed and zeroing the bed Madelyn actually weighed in at 14.7kg or 32.3 lbs! That's more like it!
Anyway, she did get the high fever at 39.9 toward the last two hours of the infusion. She experienced some belly pain and pain in both arms. This morning she complained of a headache. Dr Furman has been by checking on her each day and seems to think the fevers are a good thing that her body is responding to the anti-body!
She is itching some from the Morphine and developed a belly and leg rash but was dealt with quickly with some IV Benadryl!
Tonight at St Jude, she and Tyler received nice coats from Parisian. Hers was a white fur coat with white satin inside. Tonight she put the coat on with her pink hospital footies up to her knees and hopped around the ICU floor with nurse Julie like she was a bunny! LOL
BTW-You can find Maddie's picture in the Parisian Store in Collierville, TN (and others as well)where you can donate to St Jude!
We are thankful for another great day and praying for no allergic reactions and a complete healing!
Love to all,
Brandi
PS Remember to check out lunchforlife.org and see how you can add an ornament to Maddie's tree!
Monday, December 19, 2005 5:12 PM CST
Day 1 anti-body (hu14.18IL2) update...
All is going well!! Madelyn did very well today despite some known side effects but with NO allergic reactions!!!!
The 4 hour infusion started at 11:37am and the first sign of side effects began at 2:15pm. Madelyn complained of her back hurting, as well as her stomach and inside thighs. She continued sitting up playing games til 3pm before covering up with chills and went to sleep. She moaned and grunted while sleeping for an hour and a half.
At 4pm her fever was 40.4 degrees C/(104.8 F). She was treated with Tylenol! Her weight on the bed is 13.0 kg/(28.6 lbs). She is being given Morphine for pain at 1.5mg every 2 hours (PRN) or as needed.
The infusion was complete at 3:37 PM.
At 4:30 pm she woke up wanting ice chips and eating them like she was a Chipmunk! So in exactly one hour after stopping the infusion she was not grunting in pain anymore and being her silly self! Praise God! Thanks for the prayers being lifted! She still has two more days of the infusion and we are hopeful for it to go as smooth as today!!!
Love to all,
Brandi
Monday, December 19, 2005 11:40 AM CST
The moment of truth...
The proper procedures are in place-steroid, Dexamethizone and the dophimine for low blood pressure are taped to the wall, an oxygen mask is ready in case of emergency and everyone has eyes on Madelyn at this point. The anti-body therapy hu14.18-IL2 has just began at 11:37 CST. She is feeling great and up playing games with Granmonna at the moment! She has been watching her favorite movies and playing with Barbies and Betty Spaghetty dolls too! We all know she loves being inpatient! All this attention and lovin! I will keep you posted!
Please keep Madelyn in your thoughts and pray for no allergic reactions!
Love to all
Brandi
Sunday, December 18, 2005 3:53 PM CST
What a great birthday....
Well, I just want to say Praise God for good days! Madelyn sure had a wonderful day on her birthday!! It has been an exhausting week trying to decided whether or not she would go inpatient or even have her party but it all turned out just beautifully! As daddy and Maddie spent the day at the Jude Friday getting blood, Tyler and I were able to get the party decor and decorate the Party room at Hutchison School! I just want to say a very special Thank You to Hutchison school principal for offering the room for Madelyn's party, to Sara Barnes for your help in planning & decorating, to the girls of Hutchison that came and played Duck, duck goose and the Berry, berry Strawberry walk! The kids had such a great time with the games! To Tyler for being "in charge" of music for your sister's party, and to all our friends and family able to attend~thank you so much for making Madelyn's day extra sweet and special!!
It was sure an experience trying to incorporate Strawberry Shortcake into western! But that's our girl coming up with things all her own!
The kids had fun dancing while wearing bandana's or Strawberry Shortcake hats, we handed out burlap bags filled with fools gold "bubble gum"! Madelyn's cake was a sheet cake with a Western look and Strawberry Shortcake sitting next to an old wooden fence! Madelyn wanted no one helping her blow out the candles this year! We had to light them twice cause she thought her cousin had helped her~she's a big girl now, ya know!! LOL
The surprise that came just before singing Happy Birthday, was none other than Santa Claus! He came and handed out bags of candy and gifts to all the kids! Of course they all had to sit in Santa's lap and let him know what was on their wish list! Thanks Santa for the jolly time we all had! What a hit!!
Everyone sat in a circle around Madelyn as she opened her nice gifts from everyone!
Then came the pinata! This was a first to do a pull string pinata and it was a hit! All the kids gathered for each to pull one string and the last child actually pulled the right string and out poured the fun!! Kids were scrambling around everywhere! Too fun!!
After the party we got to spend some extra time with our friend Brooklyn from Oregon! She is in for checkups! We all went to the mall to do what the girls love to do together~ride the carosel!! After a trip to Sonic for dinner and Maddie's favorite Sonic icecream in a cone the girls were exhausted! Both fell asleep before getting to Blockbuster for a movie and all night long she slept!! She had the most fun on her Big 4th Birthday!!!
Thanks also for everyone who has signed the guestbook as we are going to be reading them to her this week while inpatient!!
Speaking of inpatient, that's where we are now! We got in today and labs have been ordered! I just ask you to please pray that if it is God's will for Maddie to have this treatment that her labs be good to go to start in the morning as planned! We are so ready to get this going and pray for No allergic reactions and No pain! We want this to work obviously but for the many kids waiting for a better treatment as well we hope that it opens doors for a better, brighter future for Madelyn and our kids still fighting this beast and the many that will be diagnosed! I know this is a lengthy update so I will end here and let you know how things go in the morning!
praying,
Brandi
Saturday, December 17, 2005 7:44 AM CST
Happy 4th Birthday Sweet Girl!!!
WE LOVE YOU Chipmunk!!!!
Friday, December 16, 2005 9:24 AM CST
Attention Madelyn Prayer Warriors; Friends & Family: Help raise money for Neuroblastoma Research in Honor of Madelyn!! What a great present for Christmas and an honor it would be!! Check out Lunch for Life and add an ornament to Maddie's Giving Tree!!
I have added these links to the top too! If you wish to give to another child too just enter code # 15347 to get a bonus ornament to Maddie! 500 ornaments gets a present!
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We finally have plans in place!!!
Madelyn's liver function levels are Perfectly NORMAL!!! YEAH!!! Fluids are still being given over the weekend. She is getting blood today since the fluids are diluting her RBC's! She is at 8.7 and it has to be 9 to start the protocol! Madelyn will go inpatient on Sunday and start the Anti-body therapy on Monday the 19th!! So anyway, she is with dad today at St Jude getting labs while Tyler and I do school work and then run errands for the party!
Yes, The party is now on!! I apologize for the last minute notice to many coming out of town but with our schedule-who knows how to plan! Thanks for bearing with us as we try to make her day extra sweet and special!! She is so excited she is turning 4! I am trying to catch up on emails too so bear with me if you've emailed me for directions to the party! The address to Hutchison School is
1740 Ridgeway
Memphis, TN 38119
Get Directions
Party Time is 11 AM – 1 PM
Contact: Brandi @ 731-377-9778
Or 901-737-1434
Shhhhhh! A surprise visitor will be on hand for the kids!
She says she is really giving up those paci's and putting them all in a Build A Bear! I just have a feeling daddy will be making a trip in the middle of the night to the paci store!!HEHE
Madelyn and our family have been enjoying some very special packages from the mail! Thank you so much to our chemo angels and friends for the special birthday and Christmas surprises! Thank you very much!!!
Thank you for all the prayers being lifted for our sweet girl!
Love to all,
Brandi
Tuesday, December 13, 2005 8:08 AM CST
I want to share a special organization with all of you! It is CNCF, Children's Neuroblastoma Cancer Foundation. Through another NB patient's father, a
Lunch For Life Campaign was founded! You can read more about it's beginnings by clicking founder's letter. Also Madelyn has a tree!! You can donate or "give up lunch for a day" and help in the research to find a cure for this beast also you will be adding ornaments to Madelyn's Giving Tree and for each ornament she receives is a chance for a trip to Walt Disney World with winner announced on Christmas Day!! Madelyn has 8 right now and counting!! She just saw her tree tonight and we are looking forward to a brightly lit tree! If you wish to donate to others please use code 15347 and Madelyn will automatically receive bonus ornaments as well! Thanks to everyone for all your help!!
UPDATE WED 11:30PM:
Well another day and we are not yet inpatient! Madelyn's liver function is down to 3 times the norm today! Better but not good enough to start the new protocol~it cannot be more than 2.5 the normal limit. However, we are on the right track but we'll get labs and try again on Thursday! What's the rush you might ask! This antibody therapy protocol says that you have to start the antibody within 10 days of signing consents which was last Thursday! This Sunday makes 10 days! Ugghhh!
-Please PRAY specifically for Madelyn's liver function to return to normal limits. Should it go past the ten days would mean doing all scans over, CT, X-rays, Echo/EKG, and 3 sedations ie MRI, MIBG and bone marrow aspirates.
-Pray that she will be able to start the treatment on time.
We really want our daughter to try this treatment! I feel in my heart it is safe and though it may cause her some pain while being given I believe it is totally going to be worth the fight!
As far as birthday plans...I am not sure what to say. It is far more important to us that Madelyn go inpatient and get this treatment and we are praying for this to happen just as soon as possible! I want her to have a great birthday too but we have to think of that miracle coming! What a great birthday present that would be! I will keep you posted on plans!
Love to all,
Brandi
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UPDATE: We did not go inpatient on Tuesday. MAdelyn's liver function is 3.2 times higher than the norm, meaning her liver is working overtime to clear her body (of the possibly the Pentamidine which is a once a month antibiotic she got last Thursday.) We are going to get labs and try again today! I will also know today about the party situation!
Love Brandi 
I know, I know I need to update!
We were so happy to be off this past weekend. It was a first since our Gatlinberg trip on Oct 15! In between some appts last week we headed to Oak Court mall to see Santa and I wasn't sure what to expect with Madelyn going to sit on his lap but she took off her coat and said get my line and she went right up and sat on jolly ole St Nick's lap!! She was very still and very subdue! She took out her paci to talk, she had alot to say but in a shy quite way...it was just so precious to watch! He talked to her for at least 10 minutes as the photo machine ran out of paper and Mrs Claus hurried to fix it!
After getting some M & M's and waiting for the pics to print she got all in a frenzy and said Mom, I forgot something! So back on Santa's lap she went and back with more M & M's! I think she just needed more chocolate!!HEHE Then later for a third time she went to tell Santa her St Jude bear needed to talk to him too and so he actually got up and gave them both hugs as we took some pics! I think he was glad to see her so happy and excited!! So are we Santa!!
Oh the funny thing to us was Santa said she ask for a castle alarm clock....LOL! Where did that come from?!
We did not get results back yesterday but hoping today but then again with this treatment all bone marrow aspirates are being sent to a lab in California for specialized staining so this may be why! I will keep you posted when I know!!
Instead of going inpatient yesterday just to get fluids they just dc'd the TPN and started a bag of fluids so we could have another night out of the hospital!! So we spent the night wrapping presents and playing Princess Monopoly!
We are going inpatient today AM! I am not sure when the injection will start but it runs for 4 hours each day over the next 3 days. Please pray that the narcotics and premeds help with pain! We have talked with her about all that we are going to be doing this week and she says, "the pain in my bones may get this cancer out of my body?" "Then it's ok, mommy!" She is so brave it just breaks my heart that I'm having to explain things like treatment that causes you pain, to a 3-4 year old.
I know that many of our NB and St Jude moms and dads are curious about this new treatment so feel free to email me with questions if I don't go into enough detail! I just fell we are all here to help each other and get the best and most info regarding treatment possible!
We are off to the hospital. Wish us well!
Love to all,
Brandi
PS: New pics are added at top (turn sound on for Christmas music!) and in photo album! I thought it interesting to see pics of Madelyn at different Christmas'.
Madelyn's birthday party will be this Saturday at Hutchison Private School on Ridgeway in Memphis.
Monday, December 12, 2005 11:50 AM CST
Praying for clear results....
So sorry for such a delay. Madelyn is doing so well and full of energy and life that we are enjoying some great times which I will get to later I promise!!
Neal and her are at the hospital now for PT and clinic and possible admission today...I just felt it neccessary to ask that you please pray for Madelyn today as we should get results of the bone marrow aspirates. Pray for Dr Furman as he delivers results, that he may have a clear understanding of what is best for Madelyn. They were clear in Sept and that's exactly what we want to hear today! God knows our every desires and wishes and all we have to do is ask! Please join us in prayer today!
Also want to mention that Madelyn's having a Western Adventure Strawberry Shortcake Birthday party this coming Saturday from 11-1! It will be here in Memphis at Hutchison Private School on Ridgeway. She's going to be FOUR!!!! I will detail more soon tonight or tomorrow!
Love to all,
Brandi
Saturday, December 10, 2005 11:58 AM CST
Happy Holidays to our Friends, Family & Prayer Warriors!
New Video and pics added!
Saturday, December 10, 2005 11:41 AM CST
http://tinypic.com/view/?pic=iei6q8
Tuesday, December 6, 2005 9:59 AM CST
Pray for the
Breedloves ...
As they face many challenges this week we ask that you please visit their website and pray specifically for this family!
Madelyn is doing very well! She is growing hair!! She has a dark shadow of fuzz! She is on a biscuit and gravy kick right now so that's all she wants to eat! I have learned the gravy cannot be from a package and I cannot burn the sausage!LOL It has to be just right!
We had CT done yesterday and all is STABLE!! Of course we just had one of these done last week but the one yesterday was just part of the antibody tests required!
Dr Furman did say that he wanted to start the antibody therapy next week on Monday or Tuesday instead of this weekend. He felt that with it being her first treatment it would be best if he among other Dr's be there! Thanks Dr Furman for caring and taking care of Madelyn in this way!
Not much else to report, we are off today after I so kindly ask that a 30 minute PT visit be changed to a day we had more going on!! Thanks to scheduler Mary for a day off!!
Love to all,
Brandi
Saturday, December 3, 2005 8:47 PM CST
Rejoicing in stability...
Madelyn continues to be doing very well! She continues to be on the 24 hr TPN so she doesn't eat much. She has the sniffles but nothing alittle over-the-counter cold med won't heal! Just one more day and we are free from the everyday grueling task of waiting around and long hours at the Jude as it will be our last day of the anti-fungal in the Med room! It's been a long month!! LOL
We had our MIBG and the results are STABLE! I would love to see clear but we are rejoicing in stability! Thank you Lord! The only spots to light up are the small primary tumor in the abdomen and a small spot on the orbit of the left eye. There are NO new spots!! We were aprehensive on these scans since Madelyn has not had any chemo or treatment in 2 months due to the infection.
This next week is all of our other scans and blood test including Bone Marrow Aspirates which were clear in September and are looking forward to hearing those words again!
The Phase II antibody therapy protocol is officially open at St Jude! It has only been done on 70 patients outside of St Jude in a Phase 1 trial. If all tests and scans are within limits next week Madelyn will go inpatient on Friday Dec 9th and will be the first patient to receive the treatment. There are mixed emotions when trying this new treatment obviously. Scary and exciting sums it up! We have prayed for this new teatment to be the answer we have been looking for to stopping this beast and we are very excited for Madelyn that she is well on her way to receiving this treatment! Will you please pray with us?
The name of the Phase II protocol is hu14.18-IL-2 for children with recurrent or refractory Neuroblastoma.
It is an anticancer molecule (called fusion protein) created by linking 2 anti-cancer molecules toghether. The first part (hu14.18)is a new antibody made in mice that is able to react against human cancer. An antibody is a type of protein that helps protect the body from bacteria and disease. The hu14.18 antibody works by connecting to certain cancer cells which makes the body's own immune system destroy those cancer cells. The second part (IL-2[Interleukin-2]), is a substance made by the human body. The body usually makes small amounts of IL-2 to help in immune system responses to infections. It is now possible to make IL-2 outside the body and give humans much higher doses than their own body makes.
The goal of the study is to find out if Madelyn's NB will respond to this treatment. To look at side effects and to find out if Madelyn's immune system will respond to this treatment and if immune responses are related to tumor response and side effects of hu14.18-IL-2.
It will be given through her central line for 3 days over 4 hours each day. She will receive meds at the start for known side effects such as high fevers and pain.
We can repeat this 3 day course every 29 days should she tolerate it well and the cancer remain stable for 4 cycles and if there are signs of reduced tumor or improvement then she can get an additional 6 cycles for a maximum of 10 cycles or (10 months).
Common side effects in a recent study include:
fatigue, fever & chills, temporary muscle and back pain, headache and nausea, & low blood pressure.
I know this was a lengthy entry but I know many of you have expressed concern for this information!
Love to all,
Brandi
Wednesday, November 30, 2005 8:58 AM CST
Trials & tribulations...
Madelyn is doing very well! I thank God for her quality of life everyday! She is so spunky and full of sassiness! She is so independant as I've mentioned before but this past week...whew! When getting lab work done she has always wanted to flush her lines with the saline and heprin, but now she gets to A/T and wants to circle the charting sheets, flush the lines, pull for blood return, then pull the needed blood, put it into the tubes, shake, put on labels, put her bandades on the ends of her line, do her BP cuff, push the button, do her own temp, and do her own weight without the nurse! Those poor A/T nurses! I know they are constantly busy as they have to get in every child before they can go to clinic or other areas and Madelyn gets them at least a half hour or so behind! We have talked with Madelyn about how the nurses have a job to do and how they get paid to do their job and so forth but she just says with a sassy look "But I can do it!" Can you say she's seen too many NIKE commercials!LOL Just some insight on how our day begins each and every day this past month!
We are still on the anti-fungal everyday in the Med room until Sunday Dec 4. Madelyn had her flu shot yesterday by Mr Aaron-bless their hearts! Not fun!
Madelyn has really been silly with Mr Ben in the Med room~Last week she called out on her nurse call button for them to bring her a warm blankie, please! and when Mr Ben wasn't fast enough one day, she pushed the button again saying, "Shake a Leg, Mr Ben"! And thus everyday since Mr Ben shakes his leg at her and she just gets the giggles from it!!LOL
We had clinic on Monday and here is the plan: We have MIBG today (Neal took her in this morning at 7AM and Tyler, Tyler's friend, Austin (Ashley Taylor's brother), and I will return to St Jude later).
The protocol for the anti-body therapy is open! It is a Phase 2 study meaning they have worked out the kinks such as toxicity levels and they know the side effects. I do not have any info on this yet except that it is a human antibody made in the St Jude lab opposed to a mouse antibody (3F8)that is offered at Sloan Kettering in New York. Our St Jude friend
Mitchel
Mitchell is on the one there and he is CLEAR!! Praise God!!
Next week Madelyn will have All scans done CT chest/abdomen/pelvis, EKG, X-rays, bone marrow aspirates, and much blood work. IF she qualifies, meaning that all levels like platelets, hemoglobin and her scans are within limits of the study then we are good to go!
We will sign consents on Thursday of next week and on
FRIDAY DECEMBER 9th Madelyn will be admitted to ICU only for precautionary measures for two days. The most apparent side effect will be very high temperature and low blood pressure. Of course this is something that Madelyn gets with every chemo or treatment so I will not be surprised if this becomes a bigger issue so it will be scary. She only has one adrenal gland which regulates BP so hers tends to run alittle low sometimes anyway.
I hope to know more on Monday about the antibody therapy and will then be able to share more at that time!
~Please pray for Madelyn's scans to be clear this week and next.
~Pray for knowledge and wisdom of the St Jude doctors and medical professionals that they make the most accurate decisions for Madelyn.
~Pray for Madelyn's health to remain good for no more delays in treatment.
~Pray for her parents and brother and the rest of the family to have patience and a peaceful understanding of God's word and the treatment of Madelyn.
~Pray for the antibody therapy to be the God givin answer we are looking for toward the cure for Madelyn and all children with Neuroblastoma and other catestrophic illnesses.
~May God's grace and mercy be with us during this time of trial and tribulation.
We love you all and thank all of you for sticking by our side as we move forward with yet a new chapter with a new treatment. We, along with the St Jude team does not know how this will all turn out as it is new to St Jude children and Madelyn will be a pioneer to the study here at St Jude.
A special Thank You to the Horrocks for your words of encouragement, your constant love, friendship and devotion to our family. It is truly a blessing!
Visit
Bellaand their family and get information about
Habitat for Hope, this amazing God inspired organization inspired by the love of the Lord and the willingness to serve families of sick children. This family is an inspiration and a "rock" to many families including ours here at St Jude. I encourage you to open your hearts and get inspired too, as they, through the Lord risk their hearts to make the world a brighter place for our children and families!
Today is Angel Zoie's birthday! She would be six today! Please visit
Angel Zoieand send your love and blessings! We love you sweet girl and miss you too!!
Love to all,
Brandi
Friday, November 25, 2005 5:52 PM CST
Update on Pamela~she is now at home in a semi-coma. Please keep this family in your prayers.
Oh the memories...
It is with a heavy heart, our sweet friend, Zack Russo is at peace with his friend, Jesus. I had just spoken with his mom on Thanksgiving at 7pm as he was sleeping. Please visit his site www.caringbridge.org/pa/ilovezachary for final arrangements. This family is so sweet and kind. I remember Zack most by his smile and laughter in the Medicine room where we had many treatments together and in Accessment Triage he was Mr G's buddy and you would always hear them laughing from down the hall! He was so brave and he is such a special little friend! We love you Zach, Betty Jo and Dave. We are going to miss you here in Memphis!
Madelyn is doing well! We had a great Thanksgiving with the exception of not getting to see Tyler or my side of the family due to our schedule and having to be at the Jude but he is back with us today! Madelyn is in the Med room getting her daily anti fungal while playing and reading stories with special friend, Miss Sara Barnes! Neal and Tyler are off to see Harry Potter! Neal and I have had a long day as we were up at 4am for a morning of crazy shopping while Madelyn visited with her grandparents! This was Neal's first year of early hustle and bustle mad crazy gotta have it shopping day! I think he was a bit overwhelmed at why people (women mostly) get into this BIG day!! The biggest toy item I noticed at Target this year was the Doodle Bear! It has been so much fun remembering back to what the HOT items have been in the past! Furby? Turbo Man? Tickle Me Elmo? CP Kids? Carebears...Oh the memories...well, all I can say is it is time to put up the ole Christmas tree!
Please keep Madelyn and our St Jude friends lifted in prayer this holiday season. Especially the families who have lost loved ones and those who are suffering. Have a blessed holiday season!
Love to all,
Brandi
Wednesday, November 23, 2005 4:09 PM CST
Looking good...
Results of the CT~Drum Rolllllll Please.......
The chest CT of the lungs are almost perfectly normal!! Meaning-there is no sign of nodules, infection etc. There is only two tiny places that they are safe to say is scar tissue! However, to be on the safe side ID (Infectious Disease) wants to keep her on the Ambizome for two more weeks (Dec 4th). This means no day off for Thanksgiving as planned. Disappointed? Maybe! Upset? Not at all! We have come so far since last year and we are thankful for this holiday season and Madelyn to be doing as well as she is! This time last year we were fighting for her life on a vent in ICU. Not knowing what the upcoming days, weeks or months were in store for us then. And look at her now...A whole year. We are counting our blessing for the past year has been full of fun-filled days, for our family and two beautiful children and for our friends and prayer warriors who continue to be a blessing on our journey of Hope and love! We are forever grateful and thankful!
Happy Thanksgiving to you and your family! May the Holiday season be filled with family, love and good cheer!
I had the opportunity to visit with our St Jude friend Pamela yesterday evening and she is not well. She is on a continuous morphine pump and adivan for pain management. She did not appear to be in any pain. She is in and out while talking with her having some hallousinations from the pain meds. (She kept seeing a man smoking and said she could not breath so her daddy assured her he would not let anyone smoke in there and then she was calm!)
She is inpatient at St Jude and will not be going home. She loves having visitors and did not want anyone to leave. It is very difficult for her to breath as she is only able to use 1/4 of her lung. She said as I was leaving to tell everyone if she had internet tomorrow she would update! Bless her heart she is fighting til the end no doubt! I also told her I would say Hi to everyone in Dresden for her and she nodded her head up and down! Please pray for comfort to her and her family. Pray that God will give them a special peace to carry on. Her daddy says it will be any day now before she will be safe in the arms of Jesus.
Pamela’sCaringbridgeSite
I spoke with Zack mother, BettyJo and he is starting to experience pain from the tumors. We took him his favorite custard with extra sprinkles and he was so happy to have his custard! He is still actively playing and talking but slowing down alot. They are staying at the Target House.
Zack’sCaringbridgeSite
We also have visited the past several days with our friend Ashley Taylor. She is now outpatient and going home this evening. They have been presented with some new experimental option but before I get anything confused on that please visit them at
Ashley’sCaringbridgeSite
It is very difficult to watch our children suffer. Words will never describe what we see and go through but I know that St Jude is a very special place where they never stop giving up or giving Hope. They work continuously doing research to find cures. I hope that anyone who follows our kids will give or do what the Lord allows you to do to help in the efforts to find cures so that kids like Madelyn and many others still fighting can have a second chance at life.
God Bless our children
Brandi
NEW PHOTOS HAVE BEEN ADDED ABOVE AND IN ALBUM!!
~I HAVE ADDED THE LINK ABOVE TO VIEW MADELYN ON THE ST JUDE WEBSITE!
~REMEMBER TO WATCH FOR HER ON NBC IN THE THANKS & GIVING COMMERCIALS!! LET US KNOW IF YOU SEE HER!
Monday, November 21, 2005 7:11 PM CST
Hello to all
Well, we are back in town from my uncle's funeral and it was a beautiful ceremony. My cousin Christine who owns a florist in Potosi, MO did all the flowers for the family and they were absolutly gorgeous! She always goes above and beyond! Thank you Chris!
The night of the funeral my grandfather was taken by ambulance to Martin hospital then to Jackson and is now here in Memphis and this morning had surgery to place a defibulator. Please pray for Madelyn and Tyler's great grandfather to recover well from this and for the family as well.
Madelyn is doing FABULOUS!! She is still on 24 hour TPN. She is getting a fluid bolis daily along with the 2 hr anti-fungal in the Med room each day.
We had clinic visit with Dr Furman today and not much to report. We will have a CT on Tuesday. We may have the entire day off on Thursday so that we can spend time with family. That will be a nice little break that we are thankful for!
Madelyn's getting excited about her BIG GIRL Birthday coming up soon! She will be 4!! She says that's when she's giving up her paci's!? We'll see about that! She's addicted! For now she's leaning toward Western Adventure Strawberry Shortcake!? She's been wearing her denim skirt and pink cowgirl boots for the past two days and watching Strawberry Shortcake movies that her aunt Donna got her last year! Too funny!
I would like to report on some special St Jude friends who need your love, prayers and support right now:
Ashley Taylor-
Madelyn and I had a chance to visit her for a couple of hours last night as she is inpatient. Madelyn walked right in and made herself comfortable on the couch (I'm sure it literally felt like home!lol) they each had sissors and cut out pictures from the Celebrity magazines that Ashley keeps in her room! Madelyn is now cub sitting one of Ashleys teddy bears for a couple of days! We are taking good care of "Crystal", Ashley!
They had proceedures today for fluid build up on the lungs and more tumor growth. She is 6 years old with Osteoscarcoma and sometime this week she will be going home to Louisana. Please visit her at
Ashley’sCaringbridgeSite
Zack Russo-
This little four year old from PA has touched our hearts since meeting him for the first time while staying at the Target House last year! He has stage IV NB and is experiencing much tumor growth. I spoke with his mom and they seem to have his pain under control-they have said one maybe two weeks until he will be safe in the arms of Jesus. Visit them at
Zack’sCaringbridgeSite
Pamela Hensley-
Pamela is an 18 year old from my hometown of Dresden, TN. She has Ostescarcoma and is at home on hospice. Please visit her at
Pamela’sCaringbridgeSite
Please keep Madelyn and all of our St Jude friends close to heart this Thanksgiving! We are so thankful for our prayer warriors!
blessings,
Brandi
Thursday, November 17, 2005 1:04 AM CST
a time of sadness...
Our hearts are heavly saddened as we grieve the loss of my beloved uncle , J.C. Pierce.
He was found in his barn Monday evening Nov 14. He was 41 years old. An honest, hard working
Christian from Sharon, TN. He was married with two children. He also leaves his parents, 6 sisters, a
brother, 16 neices and nephews and 14 great neices and nephews.
This week has been extremely hectic, exhausting and emotionally drainging on our family. The impact
of seeing my grandmother lose her youngest child and my mom, her brother on her birthday has been
quite sad to say the least.
I just ask that our prayer warriors kick into full gear this week and please pray for my family during this
time. For those that know my uncle the visitation is at The First Baptist Church of Sharon Thurs @4 and
funeral @11 on Friday. He is greatly missed and loved by many!
Mrs Lisa, I am so sorry we missed your visit on Saturday. We hope to see you real soon as things calm
down!
Madelyn is doing well! Her counts are sky HIGH! 15,000! We still put a mask on her regardless even
just going to the car! Apparently, her sinus tissues are paper thin and because of the lung infection we
are not taking any chances! The wind here has been crazy and it is getting down right COLD!! Brrrrrr!
Madelyn is so good at wearing her mask so it makes life alittle easier!! lol
This week has been a challenge with all that is going on and then her having to be at St Jude’s everyday
for her 2 hour antibiotic. I know with the grace of God we will be fine!
After our Tuesday appt Neal and Madelyn headed to his parents home as Tyler and I headed to my
grandparents. I was able to stay with Madelyn last night and then they both headed back to Memphis
this afternoon for appts then they have a full day on Thursday! Madelyn is gearing up for a girly girl
night of painting nails and doing makeup as we have a good friend coming to stay with Maddie while
Neal attends his last night class this semester and then the two of them are heading back to Huntingdon.
She is so excited about Friday as well as her aunt Amy and the stinky boys are coming to stay with her
as daddy and Tyler and I attend the funeral. It’s been 2 months since she has seen her cousins!
Today Neal called from the Jude and said her kidney levels were low and she needed a bolis of fluids
and then tomorrow they have to go in a couple of hours early to get levels done for kidney function.
Neal has always cared for Madelyn and is just as much of a caregiver as I am (and a wonderful daddy
as well) but he is having to deal with her for the next couple of days by himself. She cried tonight over
the phone wanting me to hold and rock her and I just felt so helpless 2 hours away and of course I fell to pieces.
Please pray that she will get a good night’s sleep and of course pray for perfect testing tomorrow.
Pray for safe travels.
Pray for Madelyn’s body to be healing as she continues to receive the antibiotic and is not able to begin
chemo for the next few weeks due to the infection.
Remember the bone marrow drive is coming up on Saturday! We hope that those in the area will be
able to support the life saving efforts of those waiting for a perfect match. It is only a small sample of
blood taken from the arm and you are placed on the National Bone Marrow Registry until the age of 61!
It is a one time thing and you will know that you have done your part in possibly helping save
someone’s child or family member! Thank you so much for those who are Volunteering at the drive on
Saturday! Without you there would be no drive! Thank you so much for all you do!
I will not be updating for the next several days only if there is a change with Madelyn. Please keep
Madelyn and our St Jude friends in your prayers.
Love to all,
Brandi
Thursday, November 17, 2005 1:04 AM CST
Hello to all!
Our hearts are saddened this week and forever as we grieve the loss of my beloved uncle , J.C. Pierce.
He was found in his barn Monday evening Nov 14. He was 41 years old. An honest, hard working
Christian from Sharon, TN. He was married with two children. He also leaves his parents, 6 sisters, a
brother, 16 neices and nephews and 14 great neices and nephews.
This week has been extremely hectic, exhausting and emotionally drainging on our family. The impact
of seeing my grandmother lose her youngest child and my mom, her brother on her birthday has been
quite sad to say the least.
I just ask that our prayer warriors kick into full gear this week and please pray for my family during this
time. For those that know my uncle the visitation is at The First Baptist Church of Sharon Thurs @4 and
funeral @11 on Friday. He is greatly missed and loved by many!
Mrs Lisa, I am so sorry we missed your visit on Saturday. We hope to see you real soon as things calm
down!
Madelyn is doing well! Her counts are sky HIGH! 15,000! We still put a mask on her regardless even
just going to the car! Apparently, her sinus tissues are paper thin and because of the lung infection we
are not taking any chances! The wind here has been crazy and it is getting down right COLD!! Brrrrrr!
Madelyn is so good at wearing her mask so it makes life alittle easier!! lol
This week has been a challenge with all that is going on and then her having to be at St Jude’s everyday
for her 2 hour antibiotic. I know with the grace of God we will be fine!
After our Tuesday appt Neal and Madelyn headed to his parents home as Tyler and I headed to my
grandparents. I was able to stay with Madelyn last night and then they both headed back to Memphis
this afternoon for appts then they have a full day on Thursday! Madelyn is gearing up for a girly girl
night of painting nails and doing makeup as we have a good friend coming to stay with Maddie while
Neal attends his last night class this semester and then the two of them are heading back to Huntingdon.
She is so excited about Friday as well as her aunt Amy and the stinky boys are coming to stay with her
as daddy and Tyler and I attend the funeral. It’s been 2 months since she has seen her cousins!
Today Neal called from the Jude and said her kidney levels were low and she needed a bolis of fluids
and then tomorrow they have to go in a couple of hours early to get levels done for kidney function.
Neal has always cared for Madelyn and is just as much of a caregiver as I am (and a wonderful daddy
as well) but he is having to deal with her for the next couple of days by himself. She cried tonight over
the phone wanting me to hold and rock her and I just felt so helpless 2 hours away and of course I lost
it.
Please pray that she will get a good night’s sleep and of course pray for perfect testing tomorrow.
Pray for safe travels.
Pray for Madelyn’s body to be healing as she continues to receive the antibiotic and is not able to begin
chemo for the next few weeks due to the infection.
Remember the bone marrow drive is coming up on Saturday! We hope that those in the area will be
able to support the life saving efforts of those waiting for a perfect match. It is only a small sample of
blood taken from the arm and you are placed on the National Bone Marrow Registry until the age of 61!
It is a one time thing and you will know that you have done your part in possibly helping save
someone’s child or family member! Thank you so much for those who are Volunteering at the drive on
Saturday! Without you there would be no drive! Thank you so much for all you do!
I will not be updating for the next several days only if there is a change with Madelyn. Please keep
Madelyn and our St Jude friends in your prayers.
Love to all,
Brandi
Sunday, November 13, 2005 8:47 AM CST
We are home! More to come!
Love brandi
Sorry for such a long delay! First, I want to say thank you Jesus for pulling our baby through yet another bump in our road! We thank our friends, family and prayer warriors for your love and prayers especially during these difficult times.
After a week and four days inpatient we are finally released! Madelyn has chronic sinusitus and a fungal infection in the lungs. We met with ENT while in ICU this week and have started Suedefed, Ribitussin, and antibiotic, Amoxicillin and a nasal spray. We will have to go to the Med room 2 hours each day for 30 consecutive days to get a fungal antibiotic, Ambizone! UUGGHHH! Just thinking about it makes me tired!
She felt pretty puny last night at home gettign sick a couple of times but after being hooked to TPN she looked better this morning!
Madelyn usually does not have to get GCSF shots with Irrinotecan/Temozolomide but due to low counts this time after her 9th round they started this to boost her immune system fast. They even ordered it to 10,000 due to the flu season and her infection! (Today they were 18,500 so no more shots!!!)Yeah for Madelyn!!
I was able to visit this weekend with Zoie's family and attend the RMH dinner presented by Lauren King Ministries. Thanks mom for coming back again this weekend to care for the kids while I was able to do this!
We were all able to go to RMH this morning for breakfast and fellowship with Zoie's Angels! This was their 2nd annual trip to RMH in memory of their daughter Zoie. Providing the children with backpacks full of age appropriate toys, games, blankets and goodies. They spend the entire year collecting household items to fill the pantry of RMH as well! Just like last year, a table was full of pictures, scriptures and poems honoring Zoie's memory. The impact of her spiritual presence Zoie's Angel's, the acts of kindness you share are incredible and we are going to miss all of you!
We also surprised Jane, Zoie's "Grandma Monkey" as she called her, with an Elvis Birthday cake. She loves Elvis as did Zoie! She was so overjoyed to say the least. I wasn't sure if she was ever gonna let us cut the cake she was so excited over it!!
She shares her birthday Mon. Nov. 14 with Madelyn's Grandma Sherry (my mom)! Just another thing the girls have in common! Please visit them at www.caringbridge.org/la/zoie.
I want to request special prayer for the Breedlove's. Ryan is a Retinoblastoma St Jude patient/friend. His dad, Jeff had brain surgery several months back and what Dr's thought might work lasted only for a short time. He is now faced with having a second surgery on Dec. 5 to place a shunt(just two days after the St Jude race that he is devoted to racing in for our kids!) Please visit them at www.caringbridge.org/tn/ryanbreedlove
I also want to say thank you to Keri Stewart for inviting me as your guest to the Faith Baptist Church Christmas Tea on Friday night! What an uplifting event that I will never forget!
All our love,
Brandi
Tuesday, November 8, 2005 1:50 PM CST
Still hanging out in ICU...
So I am not sure what to think or say. Madelyn had a pretty good day yesterday. She had two of the coughing episodes and finally coughed up some mucous and dry blood that was sent to lab. Nothing has come of that.
She had a CT of the sinus cavities and chest-she does have a sever sinus infection which would explain the mucous and yucky stuff! The chest CT shows some inflammation and secretions in the airway and linings of the lungs. They believe it to be Candida or yeast which is a fungus in the lungs. Or it could be viral which really would have to run its course. They assured us that it does not at all look like Aspergillus! However, a fungus anywhere where it shouldn't be is NOT a good thing. She is on 4 antibiotics including an anti-fungal!
-Please pray that the fungal antibiotic will work to heal the lungs and airway toward a complete recovery.
Her ANC is up to 300!!! Still nutripenic but in the next couple of days as this goes up and her immune system is showing signs of recoving, it will be able to fight what is going on in her little body!
She is at a low 4 on the Dophamine which is used to keep the Bp up. They have been trying to wean this but it is right now a very slow process. She will remain in ICU due to this and will possibly be inpatient for the weekend and next week. We have been told that kids with a fungal infection can take weeks for the fungal to work and their bodies to heal.
-Please pray for a complete healing.
She had a coughing episode last night and one again this morning. It literally drains her. Her eyes close and she wants to be held as she lays there contiuously coughing. It just breaks my heart that I can't make it stop but I know I am her comfort and that's what makes motherhood so special! When she begins to stop she is just so tired she puts her bed down and wants to go to sleep and then she grunts and moans with every breath for awhile. Her heart rate is high around 160 and her fevers still continue at 103-104. They did start an Albuterol treatment today and though she did not want that aresol in her face she was ok with it as long as she held my hand over her eyes.
We are hopeful this is just another bump in the road. I will keep you posted on anything new! They have been doing cultures everyday and will eventually do another CT to check for changes in the coming days. We have the greatest ICU nurses taking care of our girl! Thanks to them for all their hard work!
praying,
Brandi
Sunday, November 6, 2005 5:27 PM CST
Things are looking up…
First of all thank you to all our faithful prayer warriors and to those who have left words of encouragement in our guestbook! And to our friends and family for your phone calls-we love you all of you!
Madelyn seems to be improving as of this evening!!!!!
Results:
As far as the leg and femur X-ray there is no visible signs of anything abnormal. The chest X-ray shows a very faint shadow area in the lower lung but they are pretty sure it is NOT NB tumor! They did order another this afternoon just to note any changes and the results are not back yet. She did well during the night except for the high fevers that still continue. They have decided to start her on an anti fungal, Ambizone sp? Still nothing has grew from any of the cultures and her blood culture to check for a viral level was normal.
However, earlier this afternoon was a big scare. Just as they had started the Ambizone, her Bp bottom number dropped to the 20’s and got shaking chills even with pre meds such as Tylenol and Benadryl. They call this drug “shake and bake” due to the severity of the shaking chills effect. They started Dopamine to get the Bp up. Neal and I had left briefly for showers and got a call. By the time we had gotten back she was wrapped from head to toe in warm blankets and resting.
It didn’t take long before she heard our voices and woke right up and wanted to read stories, play paper dolls, and pretend she was a leopard hiding in a tent! She has been baby leopard since yesterday!
This is the story for that-As she was getting her X-ray dad had put on a leopard print magnetic gown and thus we all became leopards and then it turned to leopards live in the jungle so then she told us all she was heading back to the jungle room! (It can be pretty wild and crazy!lol) We always paint her room windows with window markers and thus dad had to right away paint a jungle theme on her windows!
She's had her bed changed, her comfort bath, her dressing changed and is in great spirits this evening! We look forward to more improvments and improved health with each passing day!!
Again, thanks for checking in! Baby Leopard says HELLO!
Love to all,
Brandi
Wednesday, November 2, 2005 7:24 PM CST
Update: Nov 5, 2:15PM
Madelyn is in ICU. She has had her limit on the fluid bolis and still her Bp was not keeping stable so they wanted to put her in a step down unit in ICU so they could monitor her more closely in case they have to administer Dophamine or worse-if she goes into septic shock.
Madelyn was really tired and wanted me to just hold her most all morning as the doctors and nurses came and went in and out of our room. She saw Dr. Picazzi or "Dr Georgie" as Madelyn calls him. She just lit up like a Christmas Tree when she saw him! I think she was hoping for "sleepy medicine"! That was her only smile then it turned to tears when she had to be stuck for cultures.
She was actually excited when we got to our ICU room! She sat up and wanted to paint in her new Dora watercolor book that Miss Jenny left for her as a special surprise during the night! Thanks Jenny for all the great crafts!! She was really excited when dad had gotten here too! They painted for a while together as Madelyn wanted to listen to some music!
Madelyn's Bp is stable at the moment. Her temperature is at 38.7 axcillary which means we add .6 to that! I told you incorrectly on the 40.5 being 103, it was 105! She has had a slight cough for about 1 week now that she only does very about one time a day and then goes away. Well nurse Bridgette seemed to think at last check that the bottom portion of her lungs were not moving as they should and so now in about 10 minutes from now we are going down to have and X-ray of her hip, femer and now her chest.
The nurses and doctors have been so attentive to Madelyn's every need! When she was cold-they brought her a fancy head wrap! When she needed an extra paci-they brought her two!!!
I will let you know as soon as I can of the results!
Love to all,
Brandi
URGENT PRAYER REQUEST:
As you may know Madelyn is inpatient. I have finally gotten to update thanks to our very special and caring nurse, Connie who is staying and watching her Bp even after her shift is through~just taking care of Madelyn!
Thank you so much Connie! This is the kind of quality care we get and expect at St Jude! We are truly in the best place!!
Madelyn is really sick right now. Her Bp is very low (40’s). Her temperature is staying as high as 40.5C (103) She is breathing more rapidly than normal. She is on TPN, Lipids and fluid bolis’. She is on 3 antibiotics-Merapenum, Vancamycin and Tobrmycin. Though nothing has yet grown from the cultures. Madelyn has been in a very pleasant and sweet mood since we’ve been inpatient. Just so loving! Dad stayed with her all day yesterday while I took Tyler home to get some school work done and take a break and he said her only complaint was pain in her left hip bone about 4 times. The doctors are discussing whether to do a CT or ultrasound of the hip as this may be where the source of infection is? Of course it is the weekend so this may not be done soon unless the pain changes or gets worse.
As I look at my daughter with her dark, sunken eyes and wanting to be held close it takes me back to last Thanksgiving right before she went to ICU and it is a very scary. We were in the darkest days of our life then.
Madelyn has been through so much in the past year and a half and has come so far since those days. We thank our wonderful prayer warroiors for always being here for us and giving us comfort to get through our journey! We ask that you please join us in keeping our daughter lifted in prayer as we keep fighting!
-Pray for her counts to recover quickly.
-Pray for the doctors and nurses to make the best decisions regarding Madelyn’s care and treatment.
-Pray for our family~Neal, Brandi, Tyler & Madelyn.
-Pray that the chemo is working on Madelyn’s body in a positive way toward a complete healing.
-Pray for all of our St Jude friends!
In Jesus’ name.
Praying,
Brandi
Hello from the inpatient floor...
We are now in the hospital as of last night with fever, and since she has ZERO counts now we will most likely be here awhile.
She is on an antibiotic, Mirapenum and Ondansitron for nausea and of course the fluids. She has not eaten a bite of anything in 3-4 days, only drinking sweet tea, Sprite or water! She was really puny yesterday and slept most all day and even slept the entire night but today was a different girl! She got up, sat up in her bed and wanted to watch Cinderella Story and has been going ever since! We have been to the play room today and made lunch! She has made a necklace with foam pieces, she has cut, colored and pasted and hung the pictures she has made along the side rails of her bed for the past few hours this evening! And she even eat a 1/4 of a PB & J sandwich!!! I got her on video tonight (thanks to a special friend for the use of their camera!)singing her little heart out while doing her crafts, "I can do it, I can do it, there's nuttin' really to it!" She says that's what dim birds say on Cinderella! lol
I told her she was well now it was time to go home and of course I got a big WE CAN"T GO HOME I 'm still gettin' my fluids~but the truth is she loves being inpatient and will use any excuse to stay!
When Dr Hartfort told her that her counts were down on Monday and she needed to make sure to wear her mask until her counts come up she said, If I get a fever then I'll have to get stuck with that little needle and as we were saying yeah. She just said It's okay that one doesn't hurt! So that's how much she loves being inpatient!
Please keep Madelyn as well as our St Jude friends in your prayers! Thank you so much for signing the guestbook and keeping us in your thoughts and prayers!
~Please pray for the antibiotics to be effective on Madelyn's system
~Pray for counts to recover quickly
~Pray for no fevers
Love to all,
Brandi
Wednesday, November 2, 2005 7:24 PM CST
Hello from the inpatient floor...
We are now in the hospital as of last night with fever, and since she has ZERO counts now we will most likely be here awhile.
She is on an antibiotic, Mirapenum and Ondansitron for nausea and of course the fluids. She has not eaten a bite of anything in 3-4 days, only drinking sweet tea, Sprite or water! She was really puny yesterday and slept most all day and even slept the entire night but today was a different girl! She got up, sat up in her bed and wanted to watch Cinderella Story and has been going ever since! We have been to the play room today and made lunch! She has made a necklace with foam pieces, she has cut, colored and pasted and hung the pictures she has made along the side rails of her bed for the past few hours this evening! And she even eat a 1/4 of a PB & J sandwich!!! I got her on video tonight (thanks to a special friend for the use of their camera!)singing her little heart out while doing her crafts, "I can do it, I can do it, there's nuttin' really to it!" She says that's what dim birds say on Cinderella! lol
I told her she was well now it was time to go home and of course I got a big WE CAN"T GO HOME I 'm still gettin' my fluids~but the truth is she loves being inpatient and will use any excuse to stay!
When Dr Hartfort told her that her counts were down on Monday and she needed to make sure to wear her mask until her counts come up she said, If I get a fever then I'll have to get stuck with that little needle and as we were saying yeah. She just said It's okay that one doesn't hurt! So that's how much she loves being inpatient!
Please keep Madelyn as well as our St Jude friends in your prayers! Thank you so much for signing the guestbook and keeping us in your thoughts and prayers!
~Please pray for the antibiotics to be effective on Madelyn's system
~Pray for counts to recover quickly
~Pray for no fevers
Love to all,
Brandi
Tuesday, November 1, 2005 8:21 AM CST
Whew, what a whirlwind 24 hours!
Yesterday was a fun-filled day at the Jude! Halloween is a big event every year as the nurses, doctors and staff really go all out decorating the clinics and floors from literally top to bottom~all for our kids!! Madelyn was really exciting getting dressed up as a bad, scary witch and getting her make-up on while at home but as we entered the hospital she seemed tired or was she stressed from all the people!? She wanted to be held most of the day but did put her black witch hat with long purple hair on while taking pictures and got down to get some tatoos put on her arms! She went through her very first Haunted House! She wanted to go in so badly! I ask her if she was going to be scared, and with a grin said YES, shaking her head up and down! She wouldn't touch the brains and eyeballs!
Anyway, after a lab check and while waiting for clinic visit, our Fellow, Dr Hartford approaches us with a mask, Madelyn's ANC was just 100! By the way, today is her last day as Friday she will be having baby #2! We are very excited for her and wish her all the best! She will be back in January-We are going to miss her being away!
According to Dr Furman, he believes Madelyn will most likely develop a fever and be inpatient by Thursday and he thinks we should start on some TPN (total parental nutrition through her line)since Madelyn keeps dropping weight. She has went from 14.6kg to now 13.2kg over the past several weeks.
We spoke with Dr Furman about the antibody therapy. believes she is a canidate but has not yet read the protocol. The plan now is in two weeks we'll do scans and by that time we should be ready for the therapy! I am not sure what is involved but they will let me know closer to that time and I will pass it along! He did say should this not work or be effective we are not burning bridges to where we can't go back on what we are doing!
So all of this meant no Halloween night Trick or Treating for Madelyn but Tyler still wanted to go so off to Martin we went so that he could gather more candy than he could ever eat with family there! I took Madelyn by Grandmonna and Pa Beamons and then to my mothers to wait for our neice Abby to get back in her little fairy costume! She was so adorable! Thanks mom for the great dinner and special goodies for the kids!
At 5AM, Madelyn had a fever and thus we headed to St Judes only to get there with Nurse Nicole having all her lab bottles set up ready to go and then NO TEMP! I felt so bad she went to all that trouble but she's holding them for the day just in case! We are back home now and she is snuggled in with dad back to sleep! It is raining here so it is perfect weather to sleep in so that's where I'm headed!
~Please pray for no fevers or infections as Madelyn's counts are low.
~Pray for a quick/positive recovery from the chemo treatments, that they are working on Madelyn's body in a positive way toward a complete healing!
~Please keep all our St Jude friends in your thoughts and prayers as well.
Specifically, Ashley Taylor, Zack Russo, Pamela Hensley, Jake Rayborn, Dalton Corlette, Chris Burris
Love to all,
Brandi
Sunday, October 30, 2005 8:32 PM CST
HAPPY HALLOWEEN!!!!
We are gearing up and ready for the fun festivities at the Jude on Monday! Madelyn is finally letting the cat out of the bag and wants everyone to know now she's going to be a SCARY WITCH!!!HEHE
We have come so far since last year at this time! Madelyn had just gotten out of the hospital and off the vent due to muccoussittis from transplant just two weeks before. She was a beautiful Cinderella complete with blond hair, blue heart earrings, lighted heart necklace and long white gloves. She sat in her stroller the entire time as she took pics with all her little frinds and trick or treated. Her legs hurt at the time and was still in physical therapy. The memories of our little friends we have lost since then come back as well. Madelyn still speaks of her little friends Emma Grace and Stanton, as the little LSU cheerleader and football player just kept wanting to kiss the princess! I have the cutest pics with her long white satin gloves holding her cheeks with the biggest grin! She was blushing with all that attention! We miss them as well as Aaron Hunter who was so sick at the time and Miss Zoie, I wish you could have been there too!
We are counting our blessing that Madelyn is here and feeling so well this year! She has been on her fluids and will be off tonight until they decide tomorrow whether to keep her on them. Pray that she starts to eat and can continue to stay off the fluids. She is not eating much except tonight she did eat a cup of yougurt!
Her little eyelashes are all back in and look so nice! I can see some blond fuzz coming in around the edges of her head! Today we went to get Tyler's hair cut and of course Madelyn had to get hers done too! So Madelyn sat up big and straight while the lady pretended to section and cut her hair then when she was all done Madelyn told her, pointing to her forehead, "my bangs right here need to be alittle shorter!" So the lady cut again! Too cute she is! When we were walking to the car she tucked her hands in both her jean pockets walking really easy like and said, "You like my new hair cut, mom?" Of course I just love it! So you'll have to compliment her new hair cut when you see her!
She is starting to spell and write the letters of her name! It is so cute how she will put the magnetic letters of her name on her chalkboard but not in order and say, "OK, There's my name!" She loves to do school just like Tyler!!
We spent our evening Friday in the Med room getting chemo and platelets so we didn't get to make it to Zoo Boo again this year but I'm sure there's a reason for everything and we'll just try again next year! So for anyone who went maybe you can let us know how it was! lol
We did however get to attend our friend Angela's Halloween party last night and it was even bigger than last years! Madelyn and Tyler put on their costumes and even got me in one as well! The adults don't dress up at this but what we won't do for our kids now is beyond me! So after some black clothes from the closet and some painted on whiskers I became a cat! They trick or treated with the adults passing out candy in a big circle around a bonfire, rode the hay ride and the train ride and made smores! Thanks Angela and Kevin! You Rock!!
We have clinic with Dr Furman tomorrow and we're hoping to find out more about the antibody therapy and when it may be ready. The buzz is two weeks but we'll see! We are heading to Huntingdon tomorrow after the St Jude festivies to Trick or Treat with my neice Abby! So for the friends and prayer warriors of ours there in Huntingdon be watching for a Big Black cat and a little purple and black scary witch on her broom flying around!
Bye for now! Please continue to pray for Madelyn and her St Jude friends and families! We love our prayer warriors! Have a safe and spooky Halloween!!
Love to all,
Brandi
Wednesday, October 26, 2005 10:20 PM CDT
If you have not been able to get to Zachary's webpage try again now!! I have also added others! Thanks
What an eventful day...
First of all I want to mention some special friends of ours who need your prayers and support right now more than ever.
Ashley Taylor, www.caringbridge.org/la/princessashley
Zachary Russo, www.caringbridge.org/pa/ilovezachary
Chris Burress,
www.caringbridge.org/va/burress
Jake Rayborn
www.caringbridge.org/la/jakeowen
Pamela Hensley
www.caringbridge.org/tn/pamelahensley
Ashley, thanks for sharing a picture with Madelyn today and playing paper dolls!
Zack, you and Madelyn are going to be so scary on Halloween! I can't wait to see Dracula and the witch together!
Our day today has been nonstop not to mention I didn't get any sleep last night! Not because of Madelyn but I had a speaking event at 8:45am I agreed to speak at though it seems stressful it is well worth a night without sleep! I never imagined when I was taking that speech class in college that it would ever pay off! I even waited until the absolute last semester to take it and even took it off campus because I was so shy! NOT! Can you imagine me shy? lol
Anyway, it was a speech on Madelyn's story and the Hope of St Jude! They unveiled the joining of Kelloggs and Target! As of this Sunday, Kelloggs cereal will feature a St Jude patient and story on its box and will be in the Target store grocery with proceeds going to St Jude!!
We had the special opportunity to meet some special and interesting people today and I am so excited these people care so much for our hospital! Among some of the guests were new ALSAC CEO Mr Moses, along with many other CEO's from other companies like Haggar jeans, Back Yard Burger, there were singers like Randy Owen from Alabama, and I got a hug and blessings from Charlie Daniels! Madelyn or Chipmunk today, sat with ALSAC friend Anna and did crafts during the event! She counted aloud while Mr Moses spoke but it was just heard at our table and she had everyone's attention! Mr Moses joked with her about if he could be her boyfriend and as we were standing in the food line she told him she would taste the food first and let him know!lol
Next we went to the Wolverine Target Party at St Jude from 10 to 12! First thing, Madelyn had both her hands painted with a rainbow and a Hello Kitty and the top of her head painted with fireworks! She played lots of games and won special prizes, received a paper dolls book that she loved, made a necklace with Mr. Mike, HR mgr from Target in Atlanta, GA, and sat very ladylike while getting her cartoon character portrait drawn! What a great time we had! We even got some great pics with some special friends we hadn't seen in a while, Princess Ashley Taylor and Tyler Jones! Tyler was the very first patient we met here at St Jude's on February 2, 2004! We were in surgery together as he was having his little foot amputated as we were having our line placed. He is doing very well and is cancer free!!
Then we had chemo treatment in the Med room and hooked to fluids! Her platelets are going down and will most likely get them tomorrow but she is feeling great! Madelyn was so tired she came home and took a three hour nap! We spent the night going through books and carving pumpkins! Madelyn's is a Kitty Cat and Tyler's a skull! yewww scary!!
She is not having issues with the bowels this time so far! Prayers are really being answered! We just take one day at a time and keep having fun while we feel good and counts are up, up, up!!
We plan on going to Zoo Boo one night this week with the Jones family! I hear it is lots of fun!! Bye for now!
Love to all!
Brandi
Tuesday, October 25, 2005 11:53 AM CDT
Hi there! Just wanted to let you know Madelyn is doing very well so far with this round of chemo but it is only the first week. We start this afternoon with the second half! We had clinic yesterday and all levels were fine including her BUN was at 7! The lower the better which means her kidneys are doing what they should be! Her Hemoglobin was low at 7.7 so we came home and she took a nice 3 hour nap and then we went back and spent 4 hours in the Med room getting blood!
We are staying on top of the diarreah by giving the Immodium every 4 hours like clockwork and she continues to stay on the 24 hour fluids! Madelyn has a couple of backpacks that she uses (Thanks Mo for the cute pink Kitty Kat one she loves!) that keeps her line close to her without the line hanging from her to me and risking someone running through it! That did happen once while we were on the carosel at the mall! A kid was excited and running to get on his favorite horse and ran right through us and her line, luckily I grabbed the back of his shirt and caught him before anything really traumatic happened!
Madelyn has been Chipmunk this week so there goes my idea of it being a phase just yet! She has been wanting to turn on the music and dance with dad lately! She is eating only these special rolls in the tin pan we get at Kroger and she has discovered Sour Cream and Onion potato chips! She is drinking alot of water, Sprite and good ole southern sweet tea (that's some southern talk for our Northern friends!) Dr Furman wanted her to do this and drink less Choco milk for her BUN levels and it has helped a great deal obviously!!
Tyler has been spending the weekend with family and we'll be getting him this evening when Neal gets in from school! Madelyn misses him so much anytime he's away!
We are getting ready for Halloween! We love this time of year! Tyler will be Darth Vader and Madelyn...well, she still wants it to be a surprise! HEHE I can't believe and neither can the nurses at St Jude that she is going to be something scary and not a princess that she loves! I will post pics as soon as I get them!
Well bye for now!
Love to all,
BRandi
Saturday, October 22, 2005 7:57 PM CDT
Hello to all!
Madelyn is busy, busy but having fun...
Well another long week as usual when we are going to the hospital everyday! Clinic ordered a PT visit for Madelyn this week since she is still walking on her tip toes! She has been doing this since she started walking and now that Madelyn is fairing well with her chemo and feeling well I thought we’d get some PT and dental cleaning in! So they gave us an exercise to stretch her tendons in the ankle and want us to mainly start by just doing simple verbal commands such as this is your heel and we must walk with our heels down and heels up are for dancing not walking…I’ve noticed now with the flip flops out and the shoes back in she is doing better with this issue but it’s only been a few days!
She started her 9th round of Irrinotecan/Temozolomide on Tuesday through Saturday (today). We should have two days off but they ordered lab work on Sunday and appts on Monday and chemo starting again on Tuesday through Saturday of next week in the Med room…so you can tell when we get a break we really NEED a break! Lol She is on 24 hour continuous fluids and has been feeling very well and very active!
She has been her own name “Madelyn” for several days now! Is she done with that phase, maybe? She has been so many names for over a year now…hmm..
Madelyn has had several photo opts this week and had a video shoot this afternoon with Morgan Freeman as part of the Thanks & Giving promotion with Marlo Thomas! She got to ride a tricycle around in the background with some other children while Mr. Freeman spoke. She tired after the first half saying she needed a break! She kept coming back and forth needing some sour cream and onion chips! Bless her heart she finished the first half but couldn’t finish the second but she did her best and that’s what counts, right!?
We want to say Congratulations to ‘Miss’ Jada and Matt on the birth of their first baby, Noah Matthew who made his arrival at 7:32 this morning! Jada was Madelyn’s sitter when we first moved to Dyersburg and continues to be a special part of our family! We went last night to Dyersburg and stayed with another special friend of our family, ‘Miss’ Donna. She and Madelyn had so much fun shopping and visiting in their ‘pretend’ car! When Neal and I got back from the hospital there they sat on the ottoman while the chair, AKA backseat was loaded with plastic bags full of household items and toys! Thanks Donna for sharing your unconditional love with us!
We then took Madelyn this morning to see the baby at the hospital and then a quick trip to her favorite place, Anna Marie’s! We love their shoes!!
Hope everyone is having a great weekend! Please keep Madelyn in your prayers. Pray for no stomach pains and no nausea! Pray for perfect labs and a complete healing!
Love to all,
Brandi
PS Thank you to our special visitors this week, Clint, Debra, Ally and Blake from Huntingdon and to the Huntingdon Church of Christ! Thank you for the pumpkins and the special surprises! We love you guys!
Tuesday, October 18, 2005 9:04 AM CDT
Special weekend trip…
Well, we have safely returned! Madelyn had such a great time staying a whole two days at grandmonna and grandpa’s in Huntingdon! They made mud pies together and played dress up in her Halloween costume (shhh…she doesn’t want me to tell anyone what she is going to be for Halloween but she’ll be the one saying, “I will get you my pretty!” She is very excited and can’t wait to scare the nurses at St Jude!
We had the most wonderful weekend with great weather for the convertible and great company at the Breedlove’s! Thank you Jeff and Amy for inviting us to stay and making us feel welcome! You guys are awesome! Thank you to Will for great conversation and our roller coaster ride at Cade’s Cove!
Saturday was a day filled with visiting Gatlinburg. Tyler has wanted to see Ripley’s Museum and Cooter’s garage from the Dukes of Hazzard so these were at the top of the to do list! For anyone that has stayed at Give Kids the World on their Make a Wish trip, I urge you to take advantage of the special discounts to the many attractions world wide for one year provided with the passport card they give you when you checked out! We saved $156.00 to the museum and to Ober Gatlinburg just with this special passport! All entrance fees, ride bracelets, and ice skating were all FREE!!
I got brave and decided to travel up the mountain 1300 feet on a 120 passenger tram and I was so happy we did as it was like a little city in its own with go karts, ice skating, water rides and skiing though we didn’t do these, there were carnival games, an arcade, a black bear habitat, a restaurant and gift Shoppe’s just to name a few!
Tyler and I had never ice skated and boy was it a hoot as we or rather I held on tight to the side rails for the first 3 laps! Every time I would let go I felt as if I were mime dancing in one spot! Lol I was determined however to get through one last lap without holding on or falling! Lol When Tyler got the hang of it, which was by the first lap he had no problem leaving poor ole mom behind to fend for myself! Lol Neal was up on top taking pics of this whole episode so it should be quit hilarious to see!
Anyhow, we had such a fun time but we sure missed our sweet girl being there with us!
On Sunday, we packed a picnic and went to Cade’s Cove with the Breedloves! Will had wanted to go to Dolly Woods so since we parents decided on something different we just pretended we were on a roller coaster with every hill and turn! Then we were in the scary forest and had to be very quite so the bear could jump out and scare us but there were no scares on this trip! I bet he told us 100 times how he was so glad he went with us in the convertible and how much fun he was having! lol
MEDICAL:
Madelyn had clinic on Monday and she is doing well except that she may be catching Tyler’s cold from the past two weeks. She has sneezed most all day! Her ANC is 4500! She is staying stable at 14.0 kg on her weight, though for her age they would like for her to get back to the 14.5 kg. Her BUN is a little high at 23 which means she needs to drink more water based drinks so that her kidneys will function properly. She is very active and playing! She was so excited to see us on Sunday night and has been talking about her exciting weekend! She has been so loving and hugging and kissing and wanting to be held with her arms wrapped around our necks! Just the sweetest love! I think she really missed us as much as we did her! We will start chemo on Tuesday (today) in the med room!
Please keep Madelyn in your prayers as she starts her 9th round of Irrinotecan/Temozolomide. Pray for the fluids and antibiotics to be effective on her bowels. Pray that the stomach cramps will be mild to none. Pray for a complete healing on our little girl and give God the glory for all that he has done!
Love to all,
Brandi
Friday, October 14, 2005 1:08 PM CDT
Jeff, Amy, Will & Ryan here we come...
Change of plans! Well, our trip to California as planned was cancelled by the Queen! So Madelyn wanted to spend the weekend with her grandparents and now we are going to take Tyler and go to the Mountains in Knoxville! We rented a Sebring convertible and are heading off shortly! WOW! How things can change quickly! So Diane and Regina, I hope that we will still be able to come see you in Cali another time! Thanks for calling us and inviting us to come see you guys! Gotta go! Will let you know how our trip goes when we return!
Pray for safe travels!
Love Brandi
Wednesday, October 12, 2005 9:50 AM CDT
California, here we come…
We have the week off!!!! WOW! On our appt with Dr Furman Monday he thought Madelyn looked and felt well enough to give her and us a little break by having the entire week off!! This is a first since we started in January of 04! We have spent the past couple of days visiting with family that is in town. Madelyn and her cousins Alexis and Abby have had a ball getting piggy back rides from us adults and Alexis being the oldest at 6, showed the girls how to play Goo Goo GaGa…so on the way home from Memphis last night I could hear Madelyn playing her own little version in the back seat saying Goo Goo GaGa…you’re it! How funny!
We have an exciting trip planned for the weekend! Madelyn was asked to do a photo shoot in California with Queen Latifa! There are 4 other families going along with the girls from ALSAC! I thought Tyler would be excited about California but he decided not to go on this trip he doesn’t like the ears popping and being up so high so he is staying with my mom. Neal will be flying separately getting there much earlier than us and renting a vehicle so that we can get some site seeing in while there! We are very excited as we have never been to California and this will be a great opportunity for us and Madelyn! This shoot is for the Thanks & Giving commercials to air this fall and holiday season! Please watch for Madelyn and let us know if you see her! We will tell you all about our trip when we return!
Please pray for safe travels and a safe return home! Continue to pray for a complete healing for Madelyn!
Thank you for checking in on us and signing the guestbook! We look forward to hearing from all of you!
Love to all,
Brandi
SEE NEW PHOTOS IN THE PHOTO ALBUM!!!!!
This has been a challenge since the break-in, so bear with me as I reload pics back into another computer!
Sunday, October 9, 2005 10:43 PM CDT
Enjoying some great days…
Madelyn has been enjoying some great days! She and I enjoyed a fun-filled day and night at the Pearlman’s along with Amber’s friend, Sarah. We went to Oktober Fest held each year by St Francis of Assisi. Madelyn was Joey, Joseph, and Amber’s biggest cheerleader as they were in the 5K race held on Saturday! Joseph came in first in his age group and Joey second! Amber had hurt her foot in Volleyball so I think she was taking it easy! Way to go guys!! Amber and Sarah both attend the school!
Madelyn has been eating much more now that we are off the chemo and the fluids! She had two slush’s, a hotdog, funnel cake, cheeseburger plain and two suckers! It was a junk food night but what fun we had!
She played games, went for a kiddie train ride and won brownies at the cake walk!! She was so lucky! The first time she played they actually called her # 13 as the winner! Then another time we played three young boys was manning the music and they called her # purposely for a special dinosaur cookie! How “sweet”!
Madelyn loved listening and shakin her bootie to the bands play while we all ate! Then we danced on the dance floor together! She had her eyes painted with a pink and purple feather disguise; she called it a fairy princess! We had such a fun time so now we can say we have been there, done that and even got a Oktober Fest T-shirt!! Lol
We were happy to see our aunt Mary from East St Louis, Il tonight who we haven’t seen in a couple of years! Madelyn had a ball running around with Alexis, Mary’s granddaughter, and her cousins, Gage and Nick!
Sterling Jewelers supports St Jude!!!!
Madelyn, along with St Jude patients Allison, Matt & Caleb now have their photo up at Kay Jeweler’s in the Wolf Chase Mall here in Memphis! What an honor for Madelyn to be part of this special event as they sell bears during the holidays to raise money for our wonderful hospital!! Please let me know if you see Madelyn at any of your local Sterling Jeweler retailers! She should be on the back of this month’s flier as well but the fliers were not in when we were there last!! Purchase a bear in honor of our sweet girl and support St Jude!!
Please keep lifting Madelyn in prayer!
We have appts at St Jude on Monday and start another round of Irrinotecan/Temozolomide for the next two weeks. Pray that her body will tolerate yet another round of chemo.
Love to all,
Brandi
Thursday, October 6, 2005 10:47 AM CDT
UGG Boots supports St Jude…
We had the day off on Wednesday and were able to enjoy a delightful time in the pavilion as Madelyn was asked to do a video shoot and paint her very own pair of UGG Boots made by UGG Australia! You know Madelyn has a love for rainbows so everything she colors has a rainbow in it so her pair was painted in a color block pattern! Very colorful and she covered the toes with shiny sequins! She’s a very sparkly girly girl! Loves Shiny sparkly things!! We were honored to meet the president of the company, Connie along with Karen and Leah! We are so delighted to have them come for the first time and be part of our hospital’s fundraising efforts! I know the kids really warmed and won their heart forever! Visit them at www.uggaustralia.com
Madelyn is feeling much better the past several days since being back on the fluids and she is eating!! She is eating bologna (If Danielle is reading this I know you just made the worst kind of face!) and back drinking chocolate (Monkey) milk! Don’t ask why she calls it this we just make up our own things to everything! Lol Strawberry milk is “bunny milk”! lol
Speaking of Danielle and our Miss Brooklyn~Brooklyn is doing well and they have officially headed back to Oregon for their five day trek! Unfortunately, they are having a slight delay in Kansas City, Mo as their vehicles transmission went out so they are having a minor set back in their journey home! Please keep them in your prayers for their safe return and that Brooklyn stay healthy! Visit them at www.caringbridge.org/or/brooklyn and let them know you are thinking of them! We have spent the entire summer with them and are going to miss them very much!
BOOK DRIVE:
The book drive is done and we had a great turnout of books from all over! I am not sure on the official count yet as we have one more school that we know of to pick up books from. Apparently, the Katrina evacuee shelters have been closed here in Memphis so I am calling around to places that may still could use them however, if not I have had a request of an organization that has a book drive in February and all the proceeds go to St Jude!!! Last night we had a dear friend of ours from ALSAC come over and get 200 books for the Ronald McDonald House! Wonderful! We are just so excited to be able to do something so special to honor Madelyn and all that she loves! Thank you to everyone who helped make Madelyn’s book drive a success! Get your books ready for next year as our plan is to do this every September to honor Madelyn and help others! It is also the month of Childhood cancer awareness!
Well we are off for yet another visit today at the Jude for lab check and clinic! Bye for now!
Love to all,
Brandi
Sunday, October 2, 2005 7:35 PM CDT
UPDATE: Monday Oct 3 10:30pm
Our day started with home schooling, dad cooked brunch and then appts at the Jude that turned into 7 hours LONG!! Madelyn's counts are great-ANC is 2700, Hemoglobin 10, and platelets 135! So what was I so worried about? Well, when chemistries came back her calcium was low at 7.8, normal is in the 9s. Dr Furman suggested that we take about a week off before starting another round of Irrintoecan/Temozolomide due to her chemistries taking longer to recover and hopefully the bathroom issues will subside and she will bounce back soon! So we went to the Med room for IV calcium in which Madelyn was hooked to electrodes to montitor her heart while they were given. Then it was time for her once a month antibiotic, Pentamadine(sp?), she gets in place of taking septra. We were hooked to fluids to help with her weight issues though her labs don't appear that she is dehydrated. The kids and I made a quick trip for ice cream at Sonic and then to dad's work at the book store! It's been a long day and we have to be back for labs tomorrow afternoon!
Please continue to pray for a complete healing! Love Brandi
UPDATE: Monday Oct 3 9:30 am
Thank you for checking back! Last night as I got off the phone with the doctor on call, I walked in the LR and Madelyn was sitting up from her 6 hr nap wanting food and drink! She guzzeled down 8 oz of water and tea! Her eyes even looked better! So I called the dr back to explain and she was happy with that and said for us just to see our Dr in the morning!! I think now Madelyn just needed her beauty sleep!! She is actually up playing Dragon Ball Z characters with daddy this morning seems to be feeling pretty good! Thanks for all the prayers and love for our family! Love Brandi
Info on the Bone Marrow Drive…
Our sweet girl is not feeling up to her ole silly self right now. We had appts everyday after our last day of chemo last Tuesday to make sure she was hydrated. She received fluids up to Friday when she seemed to start eating a little more but now I’ve noticed over the weekend she is eating very little. She has been sleeping almost all day and got up briefly due to “bathroom issues”! She wanted to be held by mommy and within seconds she was back to sleep as we rocked in our comfy recliner that reminds her of Dyersburg home!
I feel we need to make a quick trip to the Jude tonight just to see how her BUN is and see if she can get back on her fluids overnight. We have a clinic appt on Monday. Madelyn looks so tired and frail. She has gone from 14.6 kg to 13.2 kg (32 lbs to 29 lbs). Her little eyes are very dark and hollow looking. Please pray that the doctors will make the best decisions regarding her care and that she will regain her strength and spirit again very soon.
It is very difficult to see her this way as this chemo we are on is usually not hard on her and it scares me and hurts so much to see her feel and look this way. It just makes me wonder how much more can she take? How can she endure anything stronger? Neal had ask me several weeks ago what our plan should be for her treatment ie. Transplant, chemo, antibody therapy and I couldn’t even think of what to say because she was feeling so great and I couldn’t think in those terms but now when I see her feeling so tired and lethargic I now ask what do we do? What does this all mean? And I still don’t know the right answer as much as I want to feel so in control, I feel so helpless. I find it hard thinking about the chemo we put into her little body and even harder thinking about if she was not getting it. It really just does not seem fair but I have a great understanding of God’s reasoning but that doesn’t make the pain your children suffer go away. Please bear with me as I open my heart with not only the good but with the down times as well. As one of the very first quotes from our doctor when we arrived at St Jude, “This journey will have many ups and downs”. Boy, does it ever.
I now have all the information regarding the bone marrow drive. It is scheduled for Saturday Nov. 19 from 8am to 3pm. It will be held during the Christmas Cottage event in Newbern, TN. This is an arts and crafts festival which features antiques and Christmas shopping! So anyone in the surrounding area please come for food, fun and Christmas shopping! Please stop by Madelyn’s booth and give just a small sample of blood while you’re there to be registered on the National Bone Marrow registry! Please feel free to email me with any questions regarding this matter and below I am going to try and answer some past questions! I have copy and pasted this so it may be repetitious!
The bone marrow drive is scheduled for November 19 in Newbern, TN during Christmas Cottage days. I know that there are so many questions that are unanswered regarding bone marrow donation and I will do my best to answer any questions you may have!
The following info is taken from various pamphlets from the National Marrow Donor Program.
A life-saving procedure;
Rigorous treatment using chemotherapy and/or radiation kills cancerous cells but also destroys bone marrow, which contains immature blood forming cells. It is the blood-forming cells within the transplanted bone marrow that allow these patients to grow healthy new immune systems, without which they will almost certainly die.
How the NMDP works:
It matches volunteer donors with patients, arranges collections and transportation of blood-forming cells, and manages patient support and research programs. When a volunteer donor registers as a potential donor, his/her tissue type is listed on the donor file and is compared with the tissue type of patients in need of a transplant. If a volunteer donor is identified as a potential donor for a patient, additional testing is required to determine if the volunteer donor’s and patient’s tissue types are closely enough matched for a transplant. If a volunteer donor is determined to be th best available match for a patient, he/she may be asked to donate blood stem cells from the arm.
What is marrow?
Marrow is the soft tissue inside the bones that produces the blood-forming cells that transplant patients need to make healthy new marrow. These immature cells can develop into any of the cells present in the blood stream: red blood cells, white blood cells and platelets. These cells can be collected FROM THE CIRCULATING BLOOD.
What is the process at a bone marrow drive?
When you arrive, you will sign in at a table set up by the door, you will then be directed to a table where you will fill out a confidential donor registration and consent for HLA typing which you will sign and give to a NMDP worker who will be able to answer any questions. You will have a small vile of blood drawn and you will leave with a small bandade and a big heart!!
You will remain on the registry if you wish until age 61.
What happens after a volunteer is identified as a match?
The volunteer will be arranged to have more blood collected either from the marrow or the blood stream and the NMDP will explain which is needed.
After the info session and a physical exam, the potential donor must decide whether or not to donate.
Who pays the donor’s expense?
All medical costs including travel expenses are paid for by the patient or the patient’s insurance.
Remember to email me if you have any questions!
Love to all,
Brandi
Wednesday, September 28, 2005 9:33 AM CDT
Speech comes to life…
Hello to all!
Well I hope everyone was able to eat at Chili’s Monday for their annual St Jude’s Fundraiser! We had fun with it and decorated the GMC windows with window paint, Follow me to Chili’s to support St Jude, Chili’s Rocks, Eat at Chili’s…making sure to get the word out any way that we could! Madelyn painted a rainbow on the “We love St Jude” window and a smiley face on each of the mirrors! We went with St Jude Mom Danielle and Brooklyn and also our special friend, Sara Barnes who is a Volunteer at St Jude’s! We even saw many of our other St Jude friends, Dalton Corlette, Jake Roberts, and Cross, who is a new NB patient. There were chili peppers colored everywhere!! We had lots of fun!! I hope they blew the top off of last year’s record!! Hat’s off to Chili’s and the folks at ALSAC for such a job well done!!!
Madelyn is doing well! We have finally completed yet another round of chemo! We will finally be off for a few days at least and boy do we need it! As far as the book drive we have received over 400 books! Madelyn, Tyler and I will be heading to Huntingdon as we are excited about picking up more books from the school book drive for Madelyn! The kids are so excited to see Grandma Sherry, Leon, Uncle Chawn, Aunt ‘Lissa’, and 3 year old cousin, Abby! I know mom will have a huge dinner waiting for us and it will be a nice break from our everyday hospital routine!
This morning our family was invited to attend a speech given by Sara Barnes who is a senior at Hutchison School here in Memphis. Each senior has to write a 6 minute speech about what has inspired them to be a better person and she chose us! WOW! She did an incredible job but forgot to inform us to bring the Kleenex’s! It amazes me to hear someone tell our personal story as it really hits us as to what we are truly going through. It just sucks the wind right out of you and brings the situation to life! I know that may sound strange, how could we be oblivious to what is going on? Well, we’re not it is just that everyday we deal with the situation we are in and it is “normal” to us and it seems as if we could just do this forever if we could just to have our daughter with us but when you think about what type of cancer she has and what we really are going through the impact is heavy…but we keep walking our journey giving all the glory to God who keeps us strong and grounded! He has covered Madelyn this long and I like to think He walks along with her teaching her to be brave for the BIG miracle to come!!!!!
So we stayed to meet the seniors at the end of the speech and they were so wonderful and presented Neal and I with movie passes and dinner for two at Houston’s, Tyler a gift card to Target and Madelyn a Build A Bear card! Unbelievable!!! After chemo yesterday, we all headed to Build a Bear where Madelyn picked out a Boxer puppy with her money and named him, Barkley! That was the name of our Boxer we had to give a home to after leaving our home in Dyersburg. They really miss him! We are taking Tyler this week for his turn of shopping as he is indecisive with what he wants and Neal and I will be taking Sara up on her free babysitting offer soon!
THANK YOU SO MUCH HUTCHISON CLASS OF 2006!!!!!!!!!!!!!!
Leaning on Him to carry us through,
Brandi
Sunday, September 25, 2005 5:28 PM CDT
Well Surprise, Surprise!
Much to our surprise on Friday in the med room was none other than our St Jude family and friends Chastity, Travis and Jane! For those who do not know them they are Zoie’s mom, dad and grandma Monkey!! As Madelyn and I were sitting in rm 16 of the med room they just popped right in as we were in there with a couple of the nurses who were hooking Madelyn’s Irrinotecan. It was such a pleasant surprise to say the least! They were here because of Rita. We had a chance to do some shopping together and spend some time visiting along with Miss Melinda from ALSAC! We are so thankful their home is ok but they won’t know about the electricity and so forth until they return home Sunday. Visit them at www.caringbridge.org/la/zoie
Medical:
Madelyn (she is Madelyn today!) is doing ok! She has had one really yucky day where she was sick and dehydrated when she went off the fluids for a day but they immediately put her back on the 24 hour fluids and she is feeling much better! Her taste buds are out of whack so she feels hungry and wants to eat but her cheese and mayonnaise sandwiches are not tasting good! Lol We have been at St Jude’s about everyday for the past two weeks and we will finish this round of chemo on Tuesday and should be off for about 7-9 days with the exception of lab checks. She will continue on the fluids for a couple extra days after chemo to keep her hydrated especially since this chemo causes excessive diarrhea.
Please continue to pray for our precious Madelyn and our friends fighting cancer. Thank you for all the kind words of encouragement left in our guestbook! Thank you Mylissa for coping this for me and sending it to us!
Love to all,
Brandi
REMEMBER----Monday, Sept 26th---Support St. Jude's and eat at Chili's!!
Tuesday, September 20, 2005 7:42 PM CDT
Offer unto God thanksgiving; and pay thy vows unto the most High. PSALM 50:14
The results we have been specifically asking and praying about are in....on Madelyn's One Year post transplant!!
Madelyn’s bone marrow is CLEAR!!!! Praise God! What an emotional toll but we are blessed in many ways and thankful for awesome news!! We have to take this with caution but we relish in the good news when we receive it!
Ok, so what next? We will continue with 2-3 more rounds of the Irrinotecan/Temozolomide and then do more scans. In the mean time we are praying for a perfect match donor to be found. Neal and I believe with the understanding of all the medical knowledge from doctors, researchers, past histories etc that there is no cure with just doing chemo alone. “Where is that crystal ball?” lol Anyway, we feel her chance of long term survival will be in antibody therapy along with a donor transplant but we are waiting……
I am getting info together regarding the Bone Marrow Drive and will post soon!
Madelyn has a photo shoot at the mall in the early morning for Pottery Barn and then we'll have the day off! Did you get that TODAY is Madelyn's ONE YEAR POST TRANSPLANT!!!!Way to go Madelyn!!
Love to all,
Brandi
Monday, September 19, 2005 0:03 AM CDT
UPDATE: the bm aspirates are not in yet, checking back on Tues! Pray they are not finding anything and that's why it is taking so long!
BOOK DRIVE: I believe I mentioned Nov as the end of the drive but we will only have the drive until OCTOBER 1! That doesn't mean we won't take books after then but send what you have! We are happy to report we have over 200 books in from as far away as Canada, Pennsilvania, Florida! (I will give exact count at a later date)There are thousands to serve books to so please continue to support Madelyn's cause!
Bye for now!
Brandi
Break ins to break downs…
Well it all hit me yesterday how stressed out I really am. I just broke down in the St Jude bathroom and was asking God to give me guidance through all of this. I feel as if I am in many directions perhaps running in a circle with no where to go. When the news people were here the other day they wanted us to do “normal” things as if they weren’t here…well that would be cooking dinner, helping Tyler with homework, pretend shopping with Madelyn and her shopping cart, visiting our friends websites on the computer, all of which we were not in the mood to do! I miss my computer and changing out my pics for you! I will be so glad when the fear goes away of someone doing this again or even worse while we are at home. That’s what I fear the most as Madelyn and I was home last night. But I won’t be talking about that on this open book journal. I am just so mad right now I could scream! I love the area we live in and I could not imagine living away from St Jude, a place that Neal longs to work at when he finishes nursing school! And I having a degree in Marketing would love to work for ALSAC one day… There is so much to do here and there is so much volunteer work (which I have my heart set on doing as well) to be done in a city such as this! We miss our families and friends back home though. We sit and talk about going to see them all the time but the risk with Madelyn sometimes is just too much…I feel as if we are torn with where to live or what to do sometimes. I am not used to living in an apt which we do our best to feel like home, we went last night to take a glider rocker to storage that had been broken and got our comfy rocker/recliner and Madelyn said, yeah, it’s like Dyersburg home! Not hardly, but hey if it makes her feel good then I feel good!
Well enough of my pity party. I am just so frustrated at what all has gone on but I know have to get back into focus again on Madelyn and keeping the kids immune systems happy and healthy! I have to get this negativity behind me!
Medical:
Madelyn is doing well so far with the chemo she is on. She is on 24 hour fluids which keeps her from feeling nauseous which means she eats better which means she keeps weight on!!!! She is up to 14.4 kg or 32 lbs! Bless her heart this is the exact weight she was at two years old when we started St Jude on Feb 2, 2004! We will have chemo and clinic tomorrow. Pray specifically for clear bone marrow!
Results tomorrow! “Tomorrow, Tomorrow, I love You…Tomorrow…You’re only a day awaaayyy!!” While we were off all last week we introduced Madelyn to Annie and let’s just say…we’re hearing this song a lot around our home! Guess who Madelyn has been? lol
Love,
Brandi
Saturday, September 17, 2005 1:22 PM CDT
Many updates….
Hello to all!
OK so I know you’ve all been waiting for an update that was supposed to happen yesterday or earlier but the time just consumes me!! Where does it go? HEHE Sorry!
We are doing much better from our little episode from the break in. We are truly humbled by the love, support and your prayers through all of it. We want to thank those of you who have called to check on us, signed our guestbook, wanted to help and extended kindness to our family which gives us comfort knowing you care!
I do want to point out something that was brought to our attention~~~~~~~~~We realize that we are truly blessed with many people who care about Madelyn and our family and it is just truly humbling to say the least. God is so good! However, there appears to have been an email circulating (that I have not seen) that is “supposedly” from me that sounds like we are requesting items. First off, we do NOT want anyone to replace our items! We are a victim in this and yes it hurts and makes us fightin’ mad, we felt violated but it is MATERIAL! We went on News channel 3 as well only to gain attention with Madelyn that someone might recognize her pictures and feel led to turn them in! The pictures and home movies taken is what make us sick over! This is a learning experience and we know that the material things we have lost can and will be replaced in time! I have not sent out any emails about this situation so please make sure that if there is an address or anything suspicious please do NOT send items to it as I have not seen it and do not want someone maybe out there taking advantage of our situation to get items and so forth. I am not saying this is the case with the email that is out but we all know there are people that will and have done this to others so please since I have not seen the content just be aware that we have NOT sent any emails.
On another note, I know we had some dear friends from Florida to send emails (I knew about) requesting prayer and this is what we need at this time!
If you have questions, concerns or want to send emails out in times of need please just email me so that we are aware of the content! Thanks so much!! Remember, we love our prayer warriors!
MEDICAL:
Madelyn is feeling great! Her little eyelashes are all just about gone again! She misses her hair more than I thought! Yesterday we were driving to St Jude and she was rubbing her head and said, “daddy my hairs growin back slow” and we were silent for a moment and then tried saying ‘feel good’ things and she just turned and buried her little head in her car seat to pout….These things can just break a parents heart into million pieces. I always said she was a little heart breaker! She is going to be four soon, and she is just so mature and well aware for her age!
We started her 7th round of Irrinotecan/Temozolomide yesterday, Friday. We will do about 2-3 rounds before doing scans again! We have ask that the bone marrow registry be checked again!
RESULTS:
The MIBG shows stable, the CT shows stable and the BM aspirates will be back on Monday! This is wonderful news that we are stable but on the flip side we just did two rounds of ICE which is a harder hitting chemo that we had hoped would diminish these spots! Please pray and pray specifically that the bone marrow will be clear on Monday!
BOOK DRIVE: The stickers are in! We are still collecting books until Nov for the Book drive~thank you to all those that are helping Madelyn’s cause~you guys are great! We are making our first drop off next week!
We have gotten so many new NB IV patients recently that we are meeting new ones left and right. UUGGHH! We just saw Ben Bratten back yesterday and he has relapsed…did someone just punch me or what? He does not have a website but he is such a sweet little 5 year old, (I think he is 5) and Madelyn’s friend Luis who is an 18 year old Leukemia patient who speaks little English but keeps Madelyn in complete giggles when he’s around has relapsed just one week before going home to his country… I am getting so sick and tired of hearing the word relapse and losing friends. I try to be strong but enough is enough..when will this stop? Please pray specifically that a cure will be found, that these children can lead normal lives with their family and that no child will suffer. Pray for the parents who have lost their children due to these horrible diseases that they will have comfort…
BONE MARROW DRIVE: We are having a drive on Nov 17 in Dyersburg! More details in a later journal!
Praying specifically,
Brandi
Thursday, September 15, 2005 8:08 AM CDT
If only rabbits could talk…
First of all Madelyn is doing great! As far as our family we are not. I wish I could say things were fine here but I would be lying…Yesterday we left for St Jude at 11:15am to get labs drawn since Madelyn has procedures this morning and we returned at 1:45 pm only to have had our apt broken into. UGHHH! The door had been kicked in as there was a dusty footprint beside the door knob which had busted the door facing and sheet rock. We lost all electronic everything including a laptop computer, two digital cameras though one was broke, a printer, my camcorder with several tapes including one from our Make A Wish trip, Tyler’s play station 2, all 20 + of his PS2 games, 350 dollars in change and bills, 150 DVD’s and home movies that were in a 25 gal plastic container & Madelyn’s portable TV. UGGGHHHH! We just moved to this area and apt in May. We had no renters insurance and I know, I know we are two people that have our P&C license and had a career in insurance and you would think we would have thought of this but honestly, neither of us have ever brought it up or even thought about it. I think we seriously just thought we were safeguarded being in an Open Arms apt. It is just so frustrating and we feel so violated. I know last night we must have all looked out our blinds a hundred times to see what? I don’t know? Just to see if anyone looked suspicious? If anyone is looking at us? The fear of them returning? I’m not sure but we all sat together after the police and detective (who did get some finger prints from a box pulled from the cabinets) left and talked about what happened. Our feelings were of sadness and anger, Tyler was very sad as naturally for a 12 year old PS2 was his life so to speak! That same morning on the way to St Jude he was just telling us how he had all 5 Star wars DVD’s and that he was so excited that the 6th one would be out in Nov. and he would then have the entire collection. Poor Madelyn just kept asking questions and saying them bad guys got all her movies. It then turned to prayer and gratitude for what we did have and that Neal
didn’t stay home that morning to study. He decided to go with us! We are so thankful for this and that we were all together and the things taken were material. We thought of all those in Katrina that have nothing…we felt the fear of someone lurking…last night we pulled a mattress off one of the beds and then got out the air mattress and we all slept together on the living room floor! Ever little sound the ice maker, the pipes, people walking upstairs, the rabbit, cars outside…kept us all awake except for little Madelyn!
Just last month, our car was vandalized as I was driving down Poplar from St Jude’s, someone through an egg at the car and chip the paint in two places down to the bare metal so from the back door on had to be buffed and repainted. We have so much going on with Madelyn and yet we have to deal with issues such as these. I know it is not our fault and that these are devilish things that only makes us stronger when we have God to turn to but how aggravating!
Medical: Madelyn has Bone marrow aspirates this morning so I need to get going. I will get back to you with hopefully results later tonight early morning! Please pray that our day will be smooth and for the peace and comfort we so desperately are looking for~love to all of you
Monday, September 12, 2005 2:50 PM CDT
With a heavy heart, our precious two year old St Jude friend, Mark Weir passed away at his home in Illinois today at about 1PM. Diagnosed with Stage 4 NB just after a year old. I am not sure of funeral arrangements at this time but if you would like this info just email me and I will soon be getting that information. He does not have a web page but his home address is:
Mark and Heather Weir
6251-1550 E. St
Tiskilwa, IL 61368
If you would like to send a card of encouragement.
Love.
brandi
PS Madelyn is well, I will update more soon.
Wednesday, September 7, 2005 9:44 PM CDT
UPDATE: Fri. Sept 9 The bone marrow aspirates were cancelled today and rescheduled for next Thursday! Madelyn's platelets have dropped to just 18 (thousand) but they want to wait on transfusing to see if they may be rising on their own! We are off until then unless a problem arises! We will be working hard this week on the book drive efforts! Stay tuned...
Thank you for all the emails and comments!!
Week of scans…
Hello to all! Just a quick update (imagine that! lol) to let you know Madelyn is doing very well!! She had her CT scan yesterday and the report says STABLE! Thank you Lord! We had a quick visit at the Jude today just to get her MIBG injection and will have her MIBG scan Thursday AM (this is a full body scan for NB patients in which the radioactive material makes tumor cells glow). Bone marrow aspirates are scheduled for Friday AM and we hope for RESULTS on FRIDAY PM!!! Please pray specifically for No tumor growth, for the ICE to be effective toward a complete healing!
BOOK DRIVE:
Please note that books do not have to be purchased new-just one from home in good shape will do! Please email me if you have ANY questions regarding the drive or comments! I have contacted many of the area relief shelters and they can’t wait to get books to them from folks all over the country showing their love and support! We are excited as well for your love for Madelyn and your support for Katrina victims!!
Love to all,
Brandi
PS If you are just coming to our site or haven’t been in a while, please check the history Sept 6 for details regarding Madelyn’s Book Drive!
The address to send books is:
KATRINA RELIEF Book Drive
6730 N. Quail Hallow Dr Apt 1
Memphis, TN 38120
Tuesday, September 6, 2005 0:07 AM CDT
First of all, thank you Miss Donna and Emilee for visiting with us and madelyn last night!
Prayer request for our St jude NB friend, Mark Weir. Just as Neal & I were getting ready for a Katrina Evacuee dinner, I received a call that they have stopped all treatment and he is now home with heavy pain meds. Please pray for Mark and his family during this difficult time.
The book drive has begun…
So as I was saying…several months ago I had the idea to begin a book drive twice a year in honor of our sweet girl who has a great love of books! A way to keep her story alive so that others can be educated on Neuroblastoma and the need to find a cure! We believe reading is very essential in a young persons life thus reading from the very beginning of life is all our kids have known. So it is no wonder she loves to be read to and then sits and looks at them for hours!
Originally, the thought was to be able to supply books to the St Jude housing such as the Memphis Grizzlies House, Ronald McDonald House, or Target House, all of which we have had the opportunity to live in during our treatment here in Memphis! A special way of giving back perhaps!
As Hurricane Katrina moved in and affected our nation, our state, our city, and our household; we, along with our children have been compelled to take this drive a step further and fulfill the needs of those who have lost so much at this time. We feel this is currently where the need is.
Though we are going through a time of need in our own lives at this time, as our daughter fights her own battle with cancer we also feel so blessed to have our family together. We may have so little but compared to others we have so much!
We want to use this opportunity as a humanitarian process for not only our own selves but for our children, our friends, our loved ones! We want to restore hope in the lives of others and through our efforts we hope to bring just a smile to the faces of those who have lost everything they have ever known.
It is our goal to “bless others and restore hope”. To occupy the mind in a healthy way! They say the Lord works in mysterious ways…as I have contemplated doing this for so long, I have not due to talking myself out of it and thinking I cannot do this alone. I have realized that I will never know how much I could have done without doing it first!
It is an opportunity to “RISE UP” and seize the day! To use the resources I have to help others. Romans Ch 12 Verse 4 says we are One Body of Christ. We do not have the same material resources but we have the same body of Christ. Many may have a boat for rescue, some a house for shelter, or maybe an RV, perhaps some may have the financial resources, maybe you own a business or head a corporation, I have been so discouraged because I felt I had none of these things to help but I know I have Christ, and through Him, all things can be done. We want to do good in the name of Christ!
We want to share the same love for reading that Madelyn has to hundreds perhaps thousands! We would like for all who follow her journey to please send either one book(children, teen, adult), an activity or a craft package to the following address in honor of our sweet girl! Our city of Germantown has 600-700 evacuees, Being this is our first ever book drive, we do not have a goal set but would
like to challenge everyone to please give in honor of Madelyn and help her cause! If you are a business and have many books and are in the area we would be happy to pick them up! When we receive your book we will put a special sticker on the inside cover that will read:
This book was donated by:
______________________________________.
In Honor of Madelyn Paige Beamon
www.caringbridge.org/tn/madelyn
So please include your name and address if you’d like!
We are in the process of adding a link to another site that will keep a tally of the number of books from our donors! We will soon have this site up and running which will be an informational site only for updates pertaining to events, merchandise, bone marrow drives, book drive etc. We would like to say a special thank you to everyone for your love, support and prayers as we continue our journey!
The address to send books is:
KATRINA RELIEF Book Drive
6730 N. Quail Hallow Dr Apt 1
Memphis, TN 38120
I am adding this to the bottom of our page until the info site is up and running!
Love to all,
Neal & Brandi
Sunday, September 4, 2005 8:48 AM CDT
Hello to all!! Madelyn looks and feels great! We had to go back to St Jude to have platelets yesterday! We noticed those little red dots come up under her eyes and when checked they were down to 10! So that means now we won't have to go in today and we will not have to miss church!! For the past 2 months we have either been inpatient or low counts on Sunday!
I forgot to mention Madelyn had a photo shoot the other day, while we were inpatient, with Memphis Grizzles Basketball player, Shane ?. I can't wait to see them as she flashed that little innocent looking head tilt grin with every shot!! How adorable!
She really did not want much to do with that big, tall guy!!lol She made friends with a little girl, Anna Davis who is a 5 yr old, brain tumor patient in remission!! Anna had really long straight black hair and Madelyn would just glide her hand down it! She misses her hair so much! Funny thing was both girls had on the exact same color shirt and the photographer really wanted them to stand on each side of Shane and hug his arm, lean into him etc...and Madelyn would have nothing to do with that! She wanted to stand right beside Anna only, and they wrapped their little arms around each other as if they were best friends! How precious the memories!
Please continue to pray for our St Jude friends and families fighting childhood cancer and other catastophic illnesses. Hug your children tight and remember those who have lost thier own.
Pray for the Katrina victims as well, I try to imagine what they have went trough and how much they have lost and it consumes me, tears me up and horrifies me and then I stop to think of what cancer does to a family as well.
It is truly all a roller coaster of emotions but all we can do is stand together and help each other! And not give up on one another after the storm dies down, there is still suffering. Keep praying, stay strong, keep the faith & trust in Him, and remember God never gives us more than we can endure! This is what I keep in my heart, it is what keeps me going...
HOW YOU CAN HELP MADELYN HELP OTHERS!!
WE have started a book & activites drive for the sum 13,000 refugees we have here in our city of Memphis. I will tell you all about how it began in my next journal and give the web site with more information! We are very excited to do this in honor of our St Jude kids! Please send a book, activity or craft to the following address and write Katrina on the package:
Madelyn Beamon
Re: Katrina Relief
6730 N. Quail Hallow Rd APT 1
Memphis, TN 38120
as we will be dropping off these fun things to the children, teens, and adults as we get them in! May God bless all of you! Thank you for your help in our efforts to do what we can for our fellow Americans!!
In my next journal, I will be telling you all about our work in progress!!
We love you all,
Brandi
Friday, September 2, 2005 12:16 AM CDT
Madelyn, Tyler, & Katrina…..
Hello to all! The reason behind the delay in updates stem from Katrina. This is truly devastation and between taking care of Madelyn and home schooling, while Madelyn naps or plays we are just glued to what is going on…our hearts & prayers go out to these people suffering. I want to be there so bad to help but then I can’t imagine what it is truly like in the midst of this disaster happening right here one state below us. Trying to imagine what it could be like if the BIG ONE comes in terms of the earthquake where we sit directly on the New Madrid fault. Very scary, and these folks there deal with this fear every hurricane season, every year and they still have 6 weeks to go….Ughhh.
I spoke with Travis & Chastity, Zoie’s family, in Louisiana since Sunday before this all came and they are safe, as well as their homes!! They were actually west of the storm. They did gather Zoie’s angels, loaded two vehicles full of supplies and went Tuesday night for four hours to volunteer at the Cajun dome, I believe in Baton Rouge, handing out supplies for relief victims!! They are headed back there this weekend because a football team is cooking for the victims and they are helping as well!!! How awesome! What a blessing this family is for others! I know many of us here what to help them…
FYI: Saturday night at 7pm CST Larry King Live-3 hour special will be addressing How You Can Help!
I know here in Memphis we have been somewhat affected by Hurricane Katrina as well, Neal has classes this semester in Collierville and last night he drove 7 miles (remember here there is a gas station on every corner or within steps of each other) and signs were posted NO GAS! He stopped at one place was waiting in line for at least 20 minutes and the attendant came out with yellow caution tape and a No Gas sign. He went to the next nearest place, a Costo and saw you had to be a member so he ask a guy pumping gas if he could use his card to fill up our car at $2.82 a gallon (the lowest seen) It is as high as $3.60 here in Memphis (that he has seen). I thought it would be interesting to know what kind of gas prices you are experiencing and/or a story in your area that you could share in our guestbook. We are curious as to what other communities, cities etc are experiencing that is not talked about on the news! May God Bless our country!! Though we all live a stressful life in some way, I know from it, there is a blessing to come! We just have to keep looking to our Lord Jesus for strength, peace and comfort! And remember John 3:16. If you are a Christian believer of faith and would like to send scripture relating to these we would love to hear from you as we travel this journey and the road gets long and difficult. You may inspire others who need inspiration or a change of faith as we invite you to visit our guestbook! I know we say this often but we love our prayer warriors and believe that our faith in God and the prayers lifted to Him are the miracles behind our healing!
All of that to get to a Medical Update!!!
Madelyn had to get another unit of blood. Her counts are at 600 today WoooHooo so we will be leaving after 11 days of being inpatient with a bacteria infection in the eye! She feels very well!
Tyler’s surprise birthday in Madelyn’s room went great! We decorated the outside windows with a HB poster, window paint sign on the door and many cutout stencils and balloons provided by Childlife!! I painted the inside windows with Yoda and Goko from Dragaon Ball Z! My mom came and brought Spiderman cupcakes, balloons and presents! Neal picked up the gifts from us, wrapped them himself even! He kept Tyler busy on the computer in the library while I went down to the trunk of the car and brought them to the room!! The pictures taken are nothing but huge smiles!!! He was so happy! Then as we were opening gifts the phone rang that there are packages downstairs so Neal got them and WOW! A cookie Bouquet? This basket had a Happy birthday Tyler banner up high, then staggered down was two balloons, a cake, candles, & a present all were BIG ICED COOKIES!! HOW SWEET!!!! Then a Huge Box full of things for both Tyler and Madelyn. Tyler got a Titans jersey and hat and Madelyn clothes, activites and snacks!! Thank you to the Horrocks family and the Breedloves and to Mrs, Judy, our chemo angel who sent the kids books, for the wonderful gifts, love and making his day special!! To all who sent well wishes and cards-Tyler was very happy and says thank you!! That night he could hardly go to sleep thinking of his day and how he can’t believe his birthday is over! (They do go by quickly don’t they!)
Well Sorry for such a lengthy entry. To top it all off we have met 2 new Stage 4 NB patients this week alone…Just heart breaking. Thank you for visiting and listening! I pray that you are having a blessed day! Take care! Continue to pray for our St Jude families who many are from the areas hit by Katrina. It is estimated at St Jude that there are about 500 patients from the area zip codes and 200 that are active patients according to a hospital employee. Our hearts and prayers are with you.
praying,
Brandi
Wednesday, August 31, 2005 3:27 AM CDT
SURPRISE!! HAPPY 12th BIRTHDAY TYLER PRESTON!!!
WE LOVE YOU!!!!!!!
WOW! Tyler has grown so big and tall in the past year! When we started our journey at St Jude with Madelyn I remember him wearing size10 jeans and now he is in a 16!! He went from a child’s medium to a men’s small!! It just amazes us all how much he is growing up! Please feel free to post him a birthday hello and I will be sure that he gets it!!
I remember in the beginning, when Madelyn was first diagnosed he always seemed to feel very left out as I hear most siblings of patients do but now that we live here in Memphis to be closer to the hospital he is much better! We prayed so hard about whether or not to sell our home, whether to move from a town we had just gotten settled in… but after praying so hard about it, the decision was very clear that we home school and have our family here, together. I am very thankful for being able to do this as I know many are unable for many different reasons. I worry so much about Tyler’s feelings and if he is handling the situation at hand and so for us bringing him to it has eased many fears and the tension of being away from us!
We are inpatient and so Tyler thinks because of this we are not able to do anything at this time for his BIG day! Well…isn’t he going to be fooled!! He went home with Neal tonight so Madelyn and I could decorate the windows and room. We made a Happy Birthday poster and my mom (he thinks she can’t come because of flooding!) is coming with cupcakes, balloons and presents from the family!! Neal is hiding ours in a suit case like he’s bringing in more clothes!! HEHE It is going to be a BIG surprise party for him in our room on the second floor today!!!!
Medical Update:
Madelyn (Finger?) is doing very well! Her eye looks great! We are just waiting for counts to recover and then we can get out of this joint, as Madelyn would say! “Let’s kick it!” is one of her favorite phrases by far!!
Thanks Miss Sarah for visiting with Madelyn today and giving Neal & I a break to eat dinner this evening!! You rock!!
We are looking forward to seeing our little Miss Brooklyn soon! They went back to Oregon for a week and Neal will be picking them up tomorrow night from the airport! I guess it hasn’t been so bad since we have been inpatient but we miss our cupcakes!! Lol
I guess we will be making the most of our last month with our St Jude sisters as they will be getting to go home for good in October with the exception of quarterly scans! We have gotten so close to this family as we have gotten to spend the entire summer living in the same apt complex!
The bonds made with families here at St Jude are incredible; the journey is made easier, (if there’s such a word in this case) when we have those friends that understand what we are going through on a daily basis! We are so very fortunate and blessed to have made some incredible friends on this journey!! We love everyone who has helped make this road an unbelievable experience to say the least!
Love to all,
Brandi
Sunday, August 28, 2005 12:53 AM CDT
UPDATE: Saturday Aug. 27, 2005
I didn't get this in last night so here it is! Madelyn (Pinocchio) has to get blood today. It seems we're getting blood or platelets everyday! She has felt very well with no fevers. We will just continue to be inpatient until she shows signs of her ANC recovering!
We had a surprise visit from a special family we have met while on our journey! Mrs Lisa Reilly and her daughter Christina surprised us with their first ever visit to the hospital! Madelyn had just woken from a nap and they had brought her all kinds of Belle things to play with! Madelyn wanted to stay alone with christina to put puzzles together while Neal and I gave Lisa a tour of the hospital! People are just amazed to see this place and we are so proud of it!! We all played games in the playroom and madelyn made us all some chicken and peaches on the Home Depot grill!! Yum!! Lisa is a breast cancer patient currently in remission and has also done some of the same chemos as Madelyn. Please visit her at www.caringbridge.org/tn/lisar and send your love & prayers!
Sunday August 28
NEWS FLASH!!! MADELYN IS MADELYN TODAY!!!!WOW! This is a first since Oct 2004 when she started this whole name change daily thing!! One NCA said she must have run out of names!! lol
Madelyn is getting her 4th unit of platelets today since round 2 of ICE. It is a very rainy day her in Memphis. She hears it thunder and gets excited! We have been putting a 3ft Belle puzzle together and watching A Cinderella Story! Still doing the GCSF shots daily. She cries for a little bit because it burns really bad she says. She has eaten some cheeseburger, PB & J sandwiches lately and last night while coloring a fruit page with a banana on it she said she wanted one so bad-we'll it was 10pm and where am I going to get a banana this late? I went and ask every nurse if they might have a banana and low and behold a sweet nurse had one in her lunch box and was happy to get it for her! She doesn't eat much while inpatient so as addiment as she was I was determined to find one! Please keep our St Jude friends in your prayers as this road changes often without warning!
Love to all, Brandi
Friday, August 26, 2005 6:06 PM CDT
Just a bump in the road...
Hello to all! Madelyn's eye is getting better with each passing day!! We do know however, she has a bacteria that tested positive in the eye known as Bacillus. This is the same infection she developed last time we were inpatient with fever after the ICE. She has not had fever in two days. She received her 3rd platelet transfusion today. They were at 14K (we transfuse at 20K). She continues to get her GCSF shots everyday. Her ANC is ZERO!
Our inpatient nurses and NCA's are so wonderful!! They have been so good and patient with Madelyn like when she wants to 'push the button' to her blood pressure machine, or have to take everything on the beds blood pressure before doing hers, or only wanting the nurse to make her PB & J sandwich! It means so much to us parents to have this for our child!
She has been playing and was even able to go out of the room today and she wanted to go into the parent room where dad and Tyler were doing home schooling to watch Harry Potter so needless to say, Tyler got a break!
After I was able to get a quick shower we all went to the inpatient lobby to see an up and coming country band play and sing! WOW!! They are really great-the name of the band I believe is Coyote Wild! However, Madelyn was more interested in playing color wonder with Crystal from Childlife!
We love our prayer warriors! Please sign our guestbook and let us know you are here with us!!
Love to all,
Brandi
Check out new 'summer days' photos in the photo album!!
Thursday, August 25, 2005 0:21 AM CDT
UPDATE: The MRI went well!! Wonderful news!! The doctors do not see fungus or anything other than inflammation! No need for surgery! The eye does seem to be getting better with a half slit so we are able to see some eyeball roaming around!!
I was able to get a much needed nap today while Neal's parents, Granmonna & Pa were here! Madelyn has been actively playing since coming back from the MRI! PLAN: the plan is just to hangout here until counts recover (about 1 week)and we will most likely come back everyday for two weeks for an antibiotic in the Med room. I hope I can get this changed to sidekicks that we hook up at home! We'll see!
Thank you for checking on us daily and for lifting us in prayer!
Looking up…
Madelyn (AKA Abby today) is feeling pretty well considering her little eye is still very swollen although it seems to be less than yesterday!! She told me this morning that her eye (the swollen one) was awake, as she rolled it around under her lid, but it just won’t get up! Lol
She had to have blood today. We have been NPO-nothing to eat all day only to have the MRI cancelled and rescheduled for in the morning at 7:30. She was ok with the not eating part-she just cried because she wanted her white stuff! Lol
We have played UNO and put puzzles together and she even talked Dr Hartford into playing a game of Go fish with us!
We want to thank all those who have called to check on us! I apologize if we have not been free to talk as much as we’d like or even get to call some of you back!!! Please know that for the most part Madelyn consumes our time but we count every call, every visit, every prayer, every friend as a blessing!!!
We had a couple of special visitors today from our St Jude families. Thank you Doug & Valerie for the visit and update on Princess Ashley!!
We had a visit from Amy Breedlove where they received some of the best news yet regarding Ryan’s retinoblastoma results!!! www.caringbridge.org/tn/ryanbreedlove
I am so happy Madelyn ‘allowed’ you to stay with her while I ran down stairs for lunch! Of course she loves Candyland and being read princess stories to so she’ll look forward to your return!! Lol
I also met Amy and Ryan heading to the cafeteria for dinner! By this time dad and Tyler were back and staying with Madelyn while we had a chance to fellowship at the second floor lobby!! It was great talking with you and seeing Ryan again!!
I will let everyone know the results of tomorrows MRI just as soon as we know! Please pray for no fungus! Pray for the antibiotics to be effective in healing, no fever and no pain!
Love to all,
Brandi
Tuesday, August 23, 2005 7:24 PM CDT
UPDATE: Tues Aug 23, 8:30PM
I made it to the hospital tonight met by nurse coordinator, Terri and taken down to meet madelyn in CT. The room was filled with many doctors, nurses, opthamologist, surgeon....which made me alittle nervous. They were checking Madelyn for what might have been fungus which would have required her to go into surgery tonight since her ANC is zero she would not have been able to fight the fungus infection but thankfully, it does not look like fungus on the CT. It is only on the top of the bone and eye area and not in the bone or beyond! They feel it is just cellulitus, an infection of the tissue. However, they have added an antibiotic for fungus called ambisome just to be safe. She is also on Cefepime and Vancomycin as well. She also had to get platelets. We all came back to the room and played her new Go Fish game with a fishing pole sent to her from Grandma Sherry! madelyn won every time!
She is having an MRI done in the morning. Please continue to lift our sweet baby girl in prayer.
Love to all, Brandi
UPDATE: Tuesday, Aug 23 6PM
Madelyn is inpatient. I had to go out of town this morning and dad was here with her and Tyler. Madelyn's right eye has gradually gotten more swollen during the day so he took her in and along with that she has fever. I just spoke with him and her eye is completely swollen shut. I believe an MRI is scheduled for tonight or tomorrow along with a CT scan. Many docs and an opthamologist has been in. I need to go for now to get to the hospital but I will keep you posted as quickly as she permits! Please keep praying! Love Brandi
Monday Aug 22, 2005
Way beyond her years….
Just wanted to give a quick update on Madelyn! She is feeling very well! She has been dancing in her hot pink cowgirl boots and hat ever since the dance on Thursday night and even wanted to wear them to the hospital today!!
Her weight is down just a little bit from 14.5 kg (32 lbs) to 13.6 kg (30 lbs). We went to Kroger (grocery store) recently and she wanted sweet tea in a jug! Back in transplant we were told not to give her tea from a fountain or cooked at home but only tea that was pasteurized due to bacteria known as aspergillus sp? that can grow in the bags and is only harmful to those with low or weakened immune systems. Anyway, she knows this is the only way for her to have it and when she spotted it that is now all she has wanted for the past several days so I guess she is burnt out on her ensure plus! She rationalizes pretty well so I am hoping that we can get her to understand how important it is to keep her weight on but she is three!! Lol It’s amazing how she comprehends way beyond her years as this journey has given our little three year old much to deal with already!
Her ANC is ZERO!!!! Just three days after the ICE chemo. Her hemoglobin was fine at 9.3 and platelets are borderline at 22. We will be staying inside and isolated from folks until counts recover in hopes to keep her as safe as possible from infections. We can only hope and pray for no fevers but with this chemo they are almost inevitable! We’ll see!
I do want to tell everyone of a Vegas-themed benefit for St Jude being held on Saturday August 27th at 7 pm at Premier Place, 119 Fairmont Ave. in Jackson, TN. This is a first annual event including dinner, entertainment by The Paula Bridges Band and a silent auction! All proceeds benefit St Jude’s so please call 1-800-238-6030 for more information on sponsorship or purchasing tickets!! We love our supporters and are very blessed to have St Jude!! If you read our site or other children’s site like ours and are touched by what we go through please know that we have been given HOPE through you, our supporters!! Housing, meals, transportation, groceries…the list goes on of the many things your donations provide…the never-ending research, immaculate hospital facility, wonderful child life dept that helps kids cope, I cannot say enough of what this facility has done for Madelyn and our family. We are so grateful to have such a wonderful place that we feel is truly home away from home!
I want to finish tonight by letting everyone know that our 6 yr old friend, Ashley Taylor had her leg amputated this afternoon. Please visit her at www.caringbridge.org/la/princessashley and give them your blessings! She is a tough little girl and has been looking forward to doing this but we all know the parents most always take it the hardest! We love you sweet girl and can’t wait to see you!!!
Praying without ceasing,
Brandi
Friday, August 19, 2005 4:44 PM CDT
YEEEEHAWWWW!!
Howdy Ya'll!!
We made it to the Western dance at St Jude last night and Madelyn had a boot scootin' good ole' time to say the least!! She was decked out in her denim skirt with her hot pink cowgirl boots, pink plaid belly bearin' shirt with a pink wool cowgirl hat!! Well at least that's what she started out wearin! lol We went to the dance with Miss Brooklyn and her mommy and when these two girls get together they end up wanting to wear each others clothes so Madelyn was wearing Brooklyn's pink cheetah print bandana with braids and Brooklyn wore Madelyn's hat!! Too cute!! They were such a hoot! (See photo album for more great pics!)
The girls had some pizza and Madelyn boot-scooted and shook her bootie to just about every song!! She was so happy! She didn't look or act like a child that had just gotten three days of hard chemo! It just melts my heart to see her giggle and dance like that!!
MEDICAL UPDATE:
Madelyn had clinic today and all looks great with her labs! ANC-1800, Hemoglobin-10.4 and Platelets-112. Her potassium levels were normal so we could stop the fluids but just to be safe with her kidneys I ask for an extra day of fluids which can't hurt anything I suppose!
They put her on an antibiotic, Cephalexin due to one of the sores on her back from the bone marrow aspirates being red. Since her ANC will be going down soon they hope to combat any infection that may arise.
We got to see a friend we haven't seen in a while, Miss Camble-ena! Visit her at www.caringbridge.org/il/camble She is in remission for ALL and growing like a weed!
Thank you for visiting us! Please keep lifting Madelyn in prayer along with all of our St Jude friends!
Love to all,
Brandi
Friday, August 19, 2005 4:44 PM CDT
YEEEEHAWWWW!!
Howdy Ya'll!!
We made it to the Western danced at St Jude last night and Madely had a boot scootin' good ole' time to say the least!! She was decked out in her denim skirt with her hot pink cowgirl boots, pink plaid belly bearin' shirt with a pink wool cowgirl hat!! Well at least that's what she started out wearin! lol We went to the dance with Miss Brooklyn and her mommy and when these two girls get together they end up wanting to wear each others clothes so Madelyn was wearing Brooklyn's pink cheetah print bandana with braids and Brooklyn wore Madelyn's hat!! Too cute!! They were such a hoot! (See photo album for more great pics!)
The girls had some pizza and Madelyn boot-scooted and shook her bootie to just about every song!! She was so happy! She didn't look or act like a child that has just gotten three days of hard chemo! It just melts my heart to see her giggle and dance like that!!
MEDICAL UPDATE:
Madelyn had clinic today and all looks great with her labs! ANC-1800, Hemoglobin-10.4 and Platelets-112. Her potassium levels were normal so we could stop the fluids but just to be safe with her kidneys I ask for an extra day of fluids which can't hurt anything I suppose!
They put her on an antibiotic, Cephalexin due to one of the sores on her back from the bone marrow aspirates being red. Since her ANC will be going down soon they hope to combat any infection that may arise.
We got to see a friend we haven't seen in a while, Miss Camble-ena! Visit her at www.caringbridge.org/il/camble She is in remission for ALL and growing like a weed!
Thank you for visiting us! Please keep lifting Madelyn in prayer along with all of our St Jude friends!
Love to all,
Brandi
Thursday, August 18, 2005 2:18 PM CDT
Starting to feel the effects…
We had a busy day playing yesterday! Grandma AKA Momma Sherry came to visit and pick up Tyler yesterday! Child life had a Creative Memories scrap booking party for the kids and parents in the playroom! I had gone through my photos taking out doubles, extras, etc so that the kids could cut them and start their very own scrap book! It’s really nice to watch the kids enjoying the same things together! Grandma and Madelyn played games together until she finally had had enough!
Madelyn snuggled with me on the bed about to watch Bed Knobs and Broomsticks until she feel asleep before it had started! She has dark circles under her little eyes and has started to tire very easily. She has some thrush in her mouth as one of the chemos causes mucusitis. She has not eaten since Sunday, only drinking her Chocolate Ensure Plus with Whole Milk added! It is keeping her weight at 14.1 Kg!
We are being released sometime this afternoon and we are hoping to attend the Western dance tonight in the cafeteria of St Jude for some Boot Scootin’ Boogie fun!
Please pray for Madelyn:
-To be fever free
-for the mucusitis to subside
-For counts to recover quickly
-for the ICE chemo to put her into remission
-for a complete healing!!
Thank you Jesus for all the many Blessing you’ve given us!
Love,
Brandi
Wednesday, August 17, 2005 10:34 AM CDT
When I wish upon a star….
Right off the bat, yesterday Madelyn had to get blood! Not due to chemo; I suspect because it was already boarder line and since my dear sweet husband is preparing for nursing school I ask why! Lol He is so smart and I just love to pick his brain for information! Apparently, hemoglobin is measured by every cubic millimeter so when fluids are added to the blood stream then it dilutes the cells even more making for fewer red blood cells per cubic millimeter! Hmmm…interesting!!
Madelyn had stayed with dad for her first night of chemo Monday night since Tyler and I had some errands to run on Tuesday morning! She and dad stayed up till 2AM playing charades and UNO!
We all went to the playroom here on the second floor which is in the form of a ship! There are even portholes to look out of! This is a place for the inpatient kids to go to enjoy all sorts of things like playing games, puzzles, there is a big doll house just like the one Madelyn has at home to play with, there is a play grill and trucks and cars….It is also where we do crafts with Miss Amy or the volunteers everyday from 2-4! Yesterday we made wishing stars where the kids got to write down their wish and hang it way up high on the ship! Tyler wished 3 wishes: 1) For Madelyn’s cancer to go away 2) For no more diseases and 3) To meet George Lucus! Madelyn wished 3 wishes as well: 1) that her hair grow back. 2) That she get her line out. 3) That her heart grow big! I am not sure what that meant but she was adamant about it and as Amy was sitting next to her ask her if she could write it down for her, Madelyn just replied with her scribble writing across the page, “I already wrote it!” “See, right there!”
Miss Brooklyn and Danielle came by and stayed with us for the rest of the evening and had the great idea for trying the new Downtown Hooters so we ordered wings and she and Tyler went to pick them up! Thanks Danielle for the meal and fellowship!! You are awesome!!
Tyler stayed here with me last night and he and Madelyn and I played charades for kids and UNO (Our new favorite games for the moment!) Oh my, how my kids are just alike when it comes to entertainment! They had me laughing with them so hard. This is a board game with two sets of cards, one with 3 choices of acts then the other has tree choices as well but with a picture so that is Madelyn’s stack! Well, apparently their turn wasn’t coming around fast enough and they were more excited about acting out their card than I so before we knew it there was no board being used and the kids were both acting out every card in their deck!! You should have seen Tyler act out ‘putting on lipstick’, ‘presenting the weather’ and ‘acting out an ostrich’ and Madelyn acting out a teapot, a computer and a mouse just to name a few! It was quite hysterical!!
We had the opportunity to speak with Dr Rupert from transplant yesterday about the options we have in the future maybe with Madelyn. Specifically, with antibody therapy, transplant, chemotherapy…Dr Rupert is from Germany and he has been a NB transplant doctor for more than 30 years so it is just nice to have the viewpoints from different doctors from different areas for their knowledge, wisdom and expertise! I like having options, opinions, viewpoints and being able to make an informed decision overall!
Dr Furman is our primary doctor of course and we value his opinion, viewpoint, expertise as well since he has spent his entire career devoted to NB! We love having him as we know he has Madelyn’s best interest in heart and even saying to us if there is anything that he feels works better than what we have to offer Madelyn, he would move heaven and earth to get us there! He believes whole heartedly in quality of life which means so much to us!! What a great balance we have at this facility!
Love to our prayer warriors,
Remembering God’s promises,
Brandi
Monday, August 15, 2005 8:05 PM CDT
Round two begins…
Packed and loaded for the third time; we have finally gotten the word that Madelyn’s platelets are high enough to start round two of ICE! So we are now inpatient at the Jude in room 2062! Our number to the room is 901-495-5262!
Ok so I have to tell you this it’s just hilarious! As we were all walking out of D clinic this afternoon with a waiting room full of folks, Madelyn with her arms way up high bursts out with a song, “I’m going inpatient…I’m going inpatient!” She was the happiest little girl today when they told her she was going upstairs!! Of course everyone was laughing and I believe a little overwhelmed at her reaction! It’s hard not to like a place that absolutely spoils you rotten you know!!
So we got in our room and first thing, she wanted to lie on the bed with her arms folded up under her head and her little legs crossed! What a site indeed! Lol But that didn’t last long she was too excited and oh then to top it off here comes Amy Kennedy from Child Life…should I say more! Madelyn and our family think the world of this lady! First of all, she has she helped Madelyn and Tyler as well, overcome their fears…She is amazing!! But Madelyn just couldn’t contain herself with all the crafts she brought to her!!
This week, we have been spending time with Miss Brooklyn not that’s different from any other week really! lol Have I mentioned that she had to have her line pulled due to infection and now they are talking about not even placing it back. It’s been tough for her parents as this is something they and Brooklyn have protected for so long and essentially becomes a part of them (we remember this feeling all too well) however, it could be a blessing in disguise as hopefully this means they are near the end of treatment and hopefully she will not have too many more sticks! Now, if she could just learn to like swimming! With sensory issues this sport is going to be a tough one to master!
We spent the day yesterday trying to convince her (Brooklyn) that swimming was fun! This was not happening! Lol We was invited to our friends, Kevin and Angela’s home here in Memphis for their son, Karson’s Birthday party and swimming! HAPPY 3rd BIRTHDAY KARSON!!! We are just so happy we were outpatient and able to attend these special events! The funniest thing was Madelyn in her little pink swim suit with butt cheeks hangin’ out, sunglasses on and her pink St Jude cap turned backwards was only intrigued by the water hose and trying to keep the entire patio and pool area walkway wet! Every time the sun dried it she had to get that water hose back out to drench it along with anyone who came close to her! Lol
Ok so I know I am jumping around a lot but I guess there is just too much to say when you miss several days of journaling! Back to clinic today!
BONE MARROW ASPIRATE RESULTS are in and show STABLE (less than 5 %)!! Though we would love to hear NED-we are thankful and counting our blessings for STABLE!!! I watched the tail end of a cancer report on CNN last night and a cancer patient made a good point…”We know we are dealing with a cancer with no cure but what we can hope to achieve is STABLE and keep it there until a cure can be found!!” Finding ways to keep it there is easier said than done but we are taking one day at a time and praising God for the blessings of life!
We have found that we are a candidate for the antibody therapy treatment in NY, however after talking with Dr Furman today we will not be going at this time. Apparently, he received an email just this morning about a COG (Children’s Oncology Group) study that will be available at St Jude in about 6 weeks! It is an antibody therapy similar to the one being used in NY. We don’t know at this time if she will be eligible since he has not been given the criteria yet. We are hopeful that antibody therapy could be a cure in the making!
Also, we have found that there are many patients using Protocel and/or Glycol nutrients as a way of repairing or maturing cells and so forth…well we were asking about this for Madelyn as it seems to be a very interesting concept and it turns out doctors here at St Jude along with nutritionist have invited those company reps to come and explain the products and how they work on the body! This is in two weeks and I am anxious to see what they have to say about these products!! I will post when I know more!!
I will be posting daily while we are inpatient so please check back on the latest developments and pray for uneventful days as we start ICE around 8:30 pm tonight!
I would like to mention some St Jude buddies of ours that we’ve had the blessing to meet on our journey---I ask that you please visit them and add them to your prayers as they have been dealt some difficult news lately---
Jay-Medulloblastoma-www.caringbridge.org/ga/jay
Zack-NB-www.caringbridge.org/pa/ilovezack
Chris-brain tumor-www.caringbridge.org/va/burress
Ashley-osteoscarcoma-www.caringbridge.org/la/princessashley
Jake-hepatoblastoma-www.caringbridge.org/la/jakeowen
Dalton-NB-www.caringbridge.org/ar/daltoncorlette
I do not ever wish to leave any of our friends out but these are families that I have spoken with recently and need to be lifted in prayer along with all of our St Jude friends! We love all of you!!!!!
Thank you so much for trekking through this journey with us and most importantly know that your love, support and prayers are a blessing to us and I thank God for you daily!
Love to all,
Brandi
Thursday, August 11, 2005 7:11 PM CDT
Busy day at the Jude…
Hello to all! First of all I wanted to say thank you to Keri Stewart and the boys for inviting us to swim yesterday!! It was fun to watch Madelyn all laid back with her sun glasses on, her little hat and her little toosh in a ring floaty just livin’ the life!! She got to pet horses, eat Tommie toe tomatoes from the garden (her favorite), see the goldfish pond and pet some little white kittens before leaving! She and Tyler had so much fun!!!
So then we came home changed her dressing from the hot day in the sun and headed to Dyersburg where we visited with ‘Miss’ Donna! She provided a wonderful meal for us and she and the kids always have such a fun time there as well! Madelyn got to put her feet in the neighbor’s pool while Tyler swam!!! Thank you Donna for all the nice things!!
Busy day at the Jude!! After A/T(assessment triage),or labs, Madelyn got busy making crafts with Volunteens, Megan and Caroline in the patient care lobby until her name was called for clinic.
Today was the First Annual Sibling day at the Jude and boy was it a hit!! Tyler being skittish of new things quickly warmed up to the other siblings and familiar faces of child life! Child Life did an awesome job of decorating the auditorium and ballroom and the entire hospital was filled with star balloons just to recognize the siblings of St Jude!! They provided corndogs, chips and drinks for lunch, karaoke, a profession artist for face drawings in which they made Tyler look like a superhero!, face painting, Bingo and crafts! At the end of the party they were given a very nice star trophy! Thank you to child life for making a special day just for the siblings!!!
Medical Update: AKA Joey's Corner!)
Madelyn had bone marrow Aspirates done today and her lower back is really sore. Her ANC is 1200 and her platelets were at 61K so I guess a little low to start chemo so we are off till Monday and will go inpatient starting round two of ICE then!
I forgot to mention what a big girl she has become over the past couple of weeks she has started swallowing little pills while drinking through a straw!! So no need to have to crush them and mix with liquid!!! She said, IT WAS YUCKY!!lol
Bye for now! Take care!
Love
Brandi
Tuesday, August 9, 2005 12:12 AM CDT
Another treatment option….maybe?
All is well here! Madelyn is just getting so plump! When I see results it is definitely noticeable since normally as I see her everyday I don’t notice but I can with this!! She is up to 14.3 Kg!! That’s 31.5 LBS!! WOW! I am so excited about her weight being up!! I feel as if I’m seeing my little baby again with those extremely chubby thighs and sweet round toosh!!
She is still having this wild imagination with names for herself! She’s been Brooklyn for a while now; I will be letting you know as they change as this is just “her way”!! Madelyn has a very vivid imagination and can entertain herself quite easily and when we have company she wants them involved as well!! So to Miss Danielle and Miss Brooklyn I hope you don’t think Madelyn is worrisome she just loves you guys so much!! Yesterday, Madelyn took them on a high flyin’ adventure in a plane ride to Walt Disney World where Madelyn put on her wedding veil Minnie Mouse ears and she put Miss Danielle on her light up Minnie ears and they rode all kinds of wild rides!! FUN!!
I apologize for the ‘small’ or ‘short’ entries lately (that’s probably a good thing for some! (like Joey Pearlman!) lol (he’s a good friend of ours who loves short to the point medical only entries!!!) Sorry, I talk too much for that!! I have even thought of having a Joey’s corner just for the medical updating!! lol
Anyway, here’s the scoop! I am finally trying to get my health in order as over the past couple of years that has not been an option! Well, I have gone to the OB Dr and he ask about Madelyn (the usual conversation) and well he suggest that I use Lexapro for anxiety/depression? Huh! I was only saying how well she was doing and I wasn’t even talking that much and I guess he thinks I’m completely nuts!! Lol However, after the first night of taking it I began to get a terrible headache around my entire head and by the third night I was laid up in bed like a swaddled baby. I have never had a migraine before in my life, how aweful. Also, I am addicted to Starbucks Frappuccino coffee drinks where I drink one every morning and this past week I was out of them so I am also wondering if I may have been experiencing some withdrawal from the caffeine? I stopped taking the medicine (I am just not a medicine taker anyway) and now I am back to normal! (That’s what I suspect anyhow!) I worried more about the side effects of the medicine to the point that I was driving myself and Neal completely crazy! So point being this past week I haven’t felt well enough to do much journaling!
Ok so yesterday we had clinic with Dr Furman. Madelyn’s platelets being at 34 were too low to do bone marrow aspirates and/or chemo so we are going to try again on Thursday!
We also talked to him about a treatment option called antibody therapy which is done at Sloan Kettering in New York. Remembering back, Dr Rupert’s opinion of the best treatment, several weeks back was trying this same type stuff (antibody therapy) with the haplo transplant. I am not sure of all the details involved in this treatment yet but there is a patient here at St Jude in the conditioning process of this and after talking with his mother Mary I decided to ask Dr Furman about this. Please visit Mitchell at www.caringbridge.org/ok/mitchell where he is a stage 4 NB patient like Madelyn! Let them know their friend Madelyn sent you and they are being thought of!
As NB is without a cure, we are still searching for the most effective treatment out there. St Jude is in the process of developing an antibody here in the lab but it will be several months before it is ready and approved and we are still unsure if it will be available at that time for Madelyn. So for now there is this one in NY. Madelyn is doing very well with the treatment she is on but as her tumor has been resistive in the past we just want to have options on what might be the best thing to do should we lose any ground. However, Dr Furman suggest not waiting until that point…Dr Furman feels we should at least email the Dr there and see if Madelyn is a candidate for the treatment and if so St Jude will pay for the first consultation visit to NY. It is very expensive 50K plus and we are not sure that insurance will cover this type treatment as it will depend on how it is worded…if it is experimental, they will probably not. He was going to do this today, so first thing first, we just need to see of she is a good candidate and then we’ll talk more! I will let you know as I know!!
We are still hopeful that we can find a perfect match donor on the Bone marrow list for Madelyn. There was a recent BM drive held in honor of Miss Hallie Graville another St Jude patient with stage 4 NB www.caringbridge.org/la/hallie and they got 844 people signed up for the national bone marrow registry!!! WAY TO GO!!!
I want to thank all of you for checking on us and signing our guestbook! Please feel free to email me anytime as well!! We love our prayer warriors, friends and family and look forward to hearing from you!! It is our best communication to the world you know!! Please keep lifting our sweet girl in prayer for nothing less than a complete healing!
Love to all,
Brandi
Tuesday, August 9, 2005 12:12 AM CDT
Another treatment option….maybe?
All is well here! Madelyn is just getting so plump! When I see results it is definitely noticeable since normally as I see her everyday I don’t notice but I can with this!! She is up to 14.3 Kg!! That’s 31.5 LBS!! WOW! I am so excited about her weight being up!! I feel as if I’m seeing my little baby again with those extremely chubby thighs and sweet round toosh!!
She is still having this wild imagination with names for herself! She’s been Brooklyn for a while now; I will be letting you know as they change as this is just “her way”!! Madelyn has a very vivid imagination and can entertain herself quite easily and when we have company she wants them involved as well!! So to Miss Danielle and Miss Brooklyn I hope you don’t think Madelyn is worrisome she just loves you guys so much!! Yesterday, Madelyn took them on a high flyin’ adventure in a plane ride to Walt Disney World where Madelyn put on her wedding veil Minnie Mouse ears and she put Miss Danielle on her light up Minnie ears and they rode all kinds of wild rides!! FUN!!
I apologize for the ‘small’ or ‘short’ entries lately (that’s probably a good thing for some! (like Joey Pearlman!) lol (he’s a good friend of ours who loves short to the point medical only entries!!!) Sorry, I talk too much for that!! I have even thought of having a Joey’s corner just for the medical updating!! lol
Anyway, here’s the scoop! I am finally trying to get my health in order as over the past couple of years that has not been an option! Well, I have gone to the OB Dr and he ask about Madelyn (the usual conversation) and well he suggest that I use Lexapro for anxiety/depression? Huh! I was only saying how well she was doing and I wasn’t even talking that much and I guess he thinks I’m completely nuts!! Lol However, after the first night of taking it I began to get a terrible headache around my entire head and by the third night I was laid up in bed like a swaddled baby. I have never had a migraine before in my life, how aweful. Also, I am addicted to Starbucks Frappuccino coffee drinks where I drink one every morning and this past week I was out of them so I am also wondering if I may have been experiencing some withdrawal from the caffeine? I stopped taking the medicine (I am just not a medicine taker anyway) and now I am back to normal! (That’s what I suspect anyhow!) I worried more about the side effects of the medicine to the point that I was driving myself and Neal completely crazy! So point being this past week I haven’t felt well enough to do much journaling!
Ok so yesterday we had clinic with Dr Furman. Madelyn’s platelets being at 34 were too low to do bone marrow aspirates and/or chemo so we are going to try again on Thursday!
We also talked to him about a treatment option called antibody therapy which is done at Sloan Kettering in New York. Remembering back, Dr Rupert’s opinion of the best treatment, several weeks back was trying this same type stuff (antibody therapy) with the haplo transplant. I am not sure of all the details involved in this treatment yet but there is a patient here at St Jude in the conditioning process of this and after talking with his mother Mary I decided to ask Dr Furman about this. Please visit Mitchell at www.caringbridge.org/ok/mitchell where he is a stage 4 NB patient like Madelyn! Let them know their friend Madelyn sent you and they are being thought of!
As NB is without a cure, we are still searching for the most effective treatment out there. St Jude is in the process of developing an antibody here in the lab but it will be several months before it is ready and approved and we are still unsure if it will be available at that time for Madelyn. So for now there is this one in NY. Madelyn is doing very well with the treatment she is on but as her tumor has been resistive in the past we just want to have options on what might be the best thing to do should we lose any ground. However, Dr Furman suggest not waiting until that point…Dr Furman feels we should at least email the Dr there and see if Madelyn is a candidate for the treatment and if so St Jude will pay for the first consultation visit to NY. It is very expensive 50K plus and we are not sure that insurance will cover this type treatment as it will depend on how it is worded…if it is experimental, they will probably not. He was going to do this today, so first thing first, we just need to see of she is a good candidate and then we’ll talk more! I will let you know as I know!!
We are still hopeful that we can find a perfect match donor on the Bone marrow list for Madelyn. There was a recent BM drive held in honor of Miss Hallie Graville another St Jude patient with stage 4 NB www.caringbridge.org/la/hallie and they got 844 people signed up for the national bone marrow registry!!! WAY TO GO!!!
I want to thank all of you for checking on us and signing our guestbook! Please feel free to email me anytime as well!! We love our prayer warriors, friends and family and look forward to hearing from you!! It is our best communication to the world you know!! Please keep lifting our sweet girl in prayer for nothing less than a complete healing!
Love to all,
Brandi
Friday, August 5, 2005 1:11 PM CDT
UPDATE: Sunday, August 7th
Madelyn did not have to get platelets on Friday but they had dropped from 138 on Monday to just 24. However, when checked again on Saturday they were on there own way back up to 29!! So this seems to be a good sign they are now recovering on thier own! We go back in this evening to get labs done so that Dr Furman will know the results as soon as he arrives on Monday morning! Her bone marrow aspirates are scheduled for 8:30AM.
Madelyn is still feeling great! Last night she had her very first pajama party over at her friend Brooklyn's house while mommy and daddy went to see the Dukes of Hazzard movie. These two girls have had so much fun this summer! Brooklyn looks up to Madelyn and imitates her St Jude Big sis! She is becoming such a big girl! Brooklyn has been picking up so many words and talking in sentences even!
Visit them at www.caringbridge.org/or/brooklyn
This morning, Madelyn has had her bath, dressing change, lines flushed and she is now changing the dressing on her baby Kara! It is a big deal to have it just right!!
Bye for now,
Love Brandi
Aug 5th
BALD is BEAUTIFUL!!!!!!!!
Madelyn is completely without hair now! She is doing very well and is full of life! It is such a blessing to be away from the hospital this week! Though we love St Jude very much we are happy for Madelyn to be home!
Madelyn and daddy spent the day at Granmonna and Pa’s in Huntingdon yesterday! She had a ball shaving daddy’s head like hers!
Not much going on right now except that we are going to St Jude’s in a bit to get Madelyn’s blood and platelets checked just to be on the safe side before the weekend! I believe she may need platelets as she has a red spot under her eye but we’ll see!
Love to all!
Brandi
Check out the new photos in the photo album!
Tuesday, August 2, 2005 5:20 PM CDT
Hello to all! We had D Clinic Isolation Appt yesterday and all is well! Madelyn is now up to 13.6 kg!! Boy, that Ensure plus with 350 calories 4 times a day is really working!! I’m starting to see some thighs again!! Lol They really want her to be around 14.5 kg for her height!
We had to get blood again last night in the med room til 10pm. Dr Furman believes at this point she should start to make her own blood and platelets now as her ANC was 700 going up, up, up! So we are off right now from the hospital until Monday! We are going to try and get in some fun things this week! Possibly going on a trip someplace!
The plan for now is that on Sunday night we will go in to get labs drawn. Monday we will get a bone marrow biopsy and aspirate to make sure we are not losing any ground from the first round of ICE then we will go upstairs to start our second round! NOTE: this is all dependent on her platelet counts! Then when counts recover from the second round of ICE we will then do two rounds (which takes another month) of Irrinotecan/Temozolomide. Madelyn did not get sick ever with the first round of ICE! Thank you Jesus!
On Sunday which was 20 days from the start of ICE chemo, Madelyn has began to lose her hair…It just hit me like the wind was knocked from me. Yes, it is very minor but that’s my baby’s hair that was just growing back and getting think enough to lie down and the thought of all that she is going through to lose her little hair again all came back to me like opening a can of worms. Though she’s just beautiful without it I must say!!!
I want to say thank you to our chemo angel Miss Judy as Madelyn continues to receive some very nice surprises in the mail each week and we are so grateful as her little smile says a thousand words! Also there is a special lady Ms Linda Searce and her daughter Jacquelyn whom we met at St Jude’s just about a month ago in the gift shop. They are from South Carolina. They lost their husband and father just one year ago to cancer. They made a 9 hour trip here to St Jude just to get a glimpse of what great works go on at this special place! Thank you so much for all the special things sent to Madelyn every week!!
As Madelyn continues to inspire those around her we are so grateful for our journey and the differences made! We have had many changes in our life over the past year and a half but the material changes are nothing, we will get that back soon enough! We have been through many emotional changes as this roller coaster has many highs and lows! Physical changes with all of us!! You’ve seen that!! Lol
The spiritual changes are what matters; they have made us closer to God who gives us strength. It is through all of our faithful prayer warriors that continue to lift us up when we have needed it most! We are so thankful for this in our journey!!
Love to all!
Brandi
Tuesday, August 2, 2005 5:20 PM CDT
Hello to all! We had D Clinic Isolation Appt yesterday and all is well! Madelyn is now up to 13.6 kg!! Boy, that Ensure plus with 350 calories 4 times a day is really working!! I’m starting to see some thighs again!! Lol They really want her to be around 14.5 kg for her height!
We had to get blood again last night in the med room til 10pm. Dr Furman believes at this point she should start to make her own blood and platelets now as her ANC was 700 going up, up, up! So we are off right now from the hospital until Monday! We are going to try and get in some fun things this week! Possibly going on a trip someplace!
The plan for now is that on Sunday night we will go in to get labs drawn. Monday we will get a bone marrow biopsy and aspirate to make sure we are not losing any ground from the first round of ICE then we will go upstairs to start our second round! NOTE: this is all dependent on her platelet counts! Then when counts recover from the second round of ICE we will then do two rounds (which takes another month) of Irrinotecan/Temozolomide. Madelyn did not get sick ever with the first round of ICE! Thank you Jesus!
On Sunday which was 20 days from the start of ICE chemo, Madelyn has began to lose her hair…It just hit me like the wind was knocked from me. Yes, it is very minor but that’s my baby’s hair that was just growing back and getting think enough to lie down and the thought of all that she is going through to lose her little hair again all came back to me like opening a can of worms. Though she’s just beautiful without it I must say!!!
I want to say thank you to our chemo angel Miss Judy as Madelyn continues to receive some very nice surprises in the mail each week and we are so grateful as her little smile says a thousand words! Also there is a special lady Ms Linda Searce and her daughter Jacquelyn whom we met at St Jude’s just about a month ago in the gift shop. They are from South Carolina. They lost their husband and father just one year ago to cancer. They made a 9 hour trip here to St Jude just to get a glimpse of what great works go on at this special place! Thank you so much for all the special things sent to Madelyn every week!!
As Madelyn continues to inspire those around her we are so grateful for our journey and the differences made! We have had many changes in our life over the past year and a half but the material changes are nothing, we will get that back soon enough! We have been through many emotional changes as this roller coaster has many highs and lows! Physical changes with all of us!! You’ve seen that!! Lol
The spiritual changes are what matters; they have made us closer to God who gives us strength. It is through all of our faithful prayer warriors that continue to lift us up when we have needed it most! We are so thankful for this in our journey!!
Love to all!
Brandi
Sunday, July 31, 2005 3:37 PM CDT
We are outpatient...
We were officially released and are now outpatient but still in isolation! Madelyn has had one negative culture for the MRSA come back but we are still waiting on one more to be out of isolation!
Her platelets were 13 today so we are now in the med room getting her 5th unit since starting the ICE. Her ANC is 600 today!! This is good so now she can go without her mask!
I was able to get out with some girlfriends of mine, Kim & Emily from High school/college and another St Jude mom this weekend while dad stayed the night with Madelyn and Tyler here at the hospital! It was a much needed break after being inpatient for the past 2 week!
Neal and I were also able to attend his 10 year class reunion Saturday night and had so much fun! Neal and I have had the good fortune to come from two amazing classes! Much to our surprise, when we walked in they were telling Madelyn's story to the class and her picture was there standing along with the class photos and a donation was even given to our family from the class of 95! I cannot put into words how uplifting it is to hear the many people that have been inspired or touched by her story! It is with sincere appreciation that we say thank you so much to this class and the many who have stuck by us throughout our journey! Your love, support and prayers give us strength to keep going! We love you guys and hope that we are able to see all of you again sooner than the next reunion!
Speaking of class reunions, as I was at awe at how funny these guys are in this class (Not naming any names)lolI was reminded of my own class who I miss being with so much! We were just as close or at least I feel we've grown closer and it really makes me stop and think of my own children namely Tyler, and how I wish so much for him to have the same memorable moments in his life! We are home schooling him now while we are here but I just can't help but feel sadness for the friendships he's had to leave behind because of our situation. Tyler attended Huntingdon from k-4th grade and even at such a young age there was a special bond with all the boys in his grade as there was always someone at our house or a party to attend! OK, so I'm rattling on and though I am absolutly a big city type girl and love all there is to do in memphis, this weekend has made me miss the special bonding of friends from a small town school! I would not trade my high school days and frindships for anything so reunions are very special moments and memories to cherish for me and I was thrilled to be part of another great class this weekend! You guys were so much fun!!
Please keep lifting Madelyn in prayer and thank you for checking in on us!!
We have clinic visit on Monday with Dr Furman to see what we do next!
Love you all,
Brandi
Friday, July 29, 2005 11:32 AM CDT
some sweet special news...
We are doing ok! Madelyn is on her 9th day of being inpatient. Her ANC is still hanging around 100 so they don't want her out til it shows more signs of recovery! A.N.C. is the acronym for Absolute NutriPHIL Count which is part of the White blood counts that helps fight infection! We call it PHIL for short! So let's go Phil!!
We love our nurses but we are tired of being isolated in these 4 walls and need a change especially as good as we feel!
Anyway, no big changes: still on GCSF shots daily. Still on antibiotics as she is still positive for the two bacterial infections. Oh! And she had to get her 4th unit of platelets this morning since starting ICE. Dr Furman came in today and said they had already reduced the dose of Carboplatin this round and may do so again on her next being that it is the hardest on the platelets.
We do have some sweet special news that we'd like to share! So as many already know we really like to watch American Idol! Its season started up this year just after Madelyn came out of ICU and after we got back from our Make-A-Wish trip in January and it was something that our family looked forward to doing every week and enjoyed cheering on our favorites! Well, Neal and Tyler liked Constantine, I liked Anthony and Madelyn cheered for BO Bice from the very beginning!! It was such a joy to see her be so involved in such a show but when the music started there she was shouting it's on! It's on! And watching intently! It was special because we were doing something that the entire family enjoyed together and the memories we shared! I have her on video crying when Carrie won!!lol ( Well, we all know Bo was still a winner!)
So yesterday we get a package in from Mrs. Mindy Acton which is the wife of Bo's preacher where he attends church in Alabama. She had went to the latest concert of the American Idols Live and he signed a little white teddy bear for Madelyn. It had on a little Black and white T-shirt with all the Idol finalist on the back! He sent some T-shirts and his CD single! This was so nice of him and The Actons to do this for Madelyn! We are so blessed to have the memories of seeing many more joys in Madelyn's life and how happy she gets seeing Bo!! We wish him much success in his carreer!! We know Madelyn is for sure one of his Biggest, Little fans!!!
Please continue to pray for Madelyn and our many St Jude friends! We wish Friends of Hallie much success at the bone marrow drive in LA tomorrow and hope that someone there is a match for her and our sweet Madelyn as well!
Love to all,
Brandi
Wednesday, July 27, 2005 12:43 AM CDT
Hello to all! First of all Happy Birthday to my brother, Chawn who turns 26 today!
Madelyn is feeling really well. She is starting to get her days and nights mixed up for sure! She is up til 2-3am and sleeps til 11am. I think she just wants to stay up and play with the nurses on nights!! Madelyn has been saying for over a week now that her name is Brooklyn and insist on being called that so last night our nurse, Michelle made her a big pink sign to go on her door that says her official name change is now Brooklyn! She loved that! It will all change tomorrow!! Oh well! That's Madelyn! I mean Brooklyn!
So the only big or new news is that we will continue to be inpatient at least another day! The Dr says that we'll just go day by day at this point as far as when we'll get out. Her electrolites are down so they want to give her more sugar in her IV fluids. She is still not eating so they want to add in the calories that way! They are adjusting her antibiotic intervals which is no big deal. Her ANC stayed at 100 today! Dr says it's day 14 since ICE chemo and that counts should recover by day 17!
I'll let you all know more when I know!! Thanks for checking in on us! We love our prayer warriors and hope that you enjoy reading the updates!!
love to all,
Brandi
Tuesday, July 26, 2005 1:24 PM CDT
Back on the southside…
Hello to all! Sorry for the delay yesterday as it was pretty eventful! We had a visit from Santa! Yes, you heard right, it was Christmas in July here at St Jude!!! He left several nice gifts at our door before we woke up!! Then daddy came and dropped off Tyler before going to class and we started packing! Well only to go down South! To the South end of the hall that is! We are now back 'home' on the solid tumor side in isolation room 2061. The phone number here is 495-5261.
Madelyn had to get her 2nd unit of blood since doing the ICE chemo. So then she was rarin’ to go!! We played games all day!
Madelyn had her last fever yesterday morning and her cultures are still positive from the nasal culture. We do another culture today. We have to get two negatives to come out of isolation gowns, glove and mask but we will still be able to go home just as soon as counts start to recover!
They have started her on an appetite stimulant, Periactin twice a day. She has only drank chocolate ensure mixed with whole milk for the last week of being inpatient. She did eat 4 little Gummy bears last night that ‘Miss’ Keri brought to her! Our friend Keri Stewart came and played with Madelyn last night while Neal and Tyler went home, he had a big test to study for in A&P class and I was able to meet with Miss Brooklyn & her Grandma McKay at Chili’s for her Birthday! Thank you to Brooklyn’s grandma for such a treat!
Thanks so much Keri for the Birthday gift and the fun goodies for Madelyn! I know she was so excited to see and play with you!!
To our new friend Kali who we met at a ballpark this summer, thank you so much for the cute outfits you sent for Madelyn!!
Today, Madelyn has to get more platelets. This is the 3rd unit since doing ICE.
Today her ANC was 100!! This can fluctuate so we are hopeful that it will be the same tomorrow and if so we will get to go HOME!!! Her bottom still continues to burn from the inside. They are keeping a watchful eye as her counts start to recover that she does not get an abscess which is a pocket of fluid build-up caused from an abundance of white cells attacking the infection. This requires surgery to fix. She goes through so much already and any other procedure is potential for more infection, more pain. Please pray for no fevers and that as Madelyn’s counts recover that her little body heal in such a way that no additional procedures will be necessary.
Love Brandi
Sunday, July 24, 2005 8:57 PM CDT
UPDATE: 11:00PM
Madelyn has another fever. We are praying for a complete healing.
Love Brandi
8:57PM
Madelyn had another fever today at 4PM. They have started her on two new antibiotics, Vancamycin and Tobramycin. She is still having the spisodes with the bowel movements burning but the Senna is helping with making them looser and more often!
She has been feeling really well despite the issue with her bottom! It has been a challenge to say the least with entertainment around here! We are running thin of things to do...we have painted, colored, drew pictures, crafts, puzzles, danced like ballerinas, played charades, games, played dress-up with Barbies, wooden dolls, had manicures, even pretended we were animals! We are not allowed out into the play areas so we are confined...literally!
Gotta go, it's playtime again!
Love Brandi
Sunday, July 24, 2005 0:18 AM CDT
Crocodile tears being shed...
We are still inpatient! Madelyn’s last fever was yesterday afternoon up until 10 minutes ago and well we now have another fever as she sits on the couch beside me watching The Little Mermaid!
Today is day 9 post ICE chemo. Madelyn feels ok for the most part with her only complaint (other than the S.H.O.T) being that her little bottom burns really bad. It is neither red nor pink. It looks perfectly normal however, when she starts to go she just shrieks with an ear shattering scream. It breaks my heart as she does not want me or anyone else hold her, touch her or pick her up so she just stands or sits wherever she is with huge crocodile tears and screams till it eases. They have her on antibiotics intended to cover the issue as well as giving her Senna, a stool softener for the constipation she is having. We also gave her a sitz bath today which is basically just her sitting in a tub with warm water and beta dine. She did not like her water being yellow!
Madelyn had to get her second unit of platelets today since starting this ICE chemo! They were 10! (less than 20 req. a transfusion) The low platelets have made the back of her little arms full of bruises from the GCSF shots given daily. (These S.H.O.T’s (we spell it around her!) really burn and this constitutes much screaming as well!)
We had a visitor today, our SJ friend, Miss Brooklyn! (Well I had to see them outside our room!) They brought some more of those yummy cupcakes! I was really trying hard to get into a particular outfit by Neal’s class reunion coming up but I really think that’s all out the window now! Lol We’ll see!
We also had a couple of clowns visit the room today! They brought some really cool crafts and stuff for mom and dad as well!
My mom brought Tyler here yesterday and we all played Battleship and did crafts in the room then mom, Tyler and I went out to the mall and had Chinese while Madelyn and daddy played. It was really nice to get a break if only for a little bit! Then we came back and wrapped birthday gifts for our two special Birthday girls, Brooklyn and Abby!
Abby, I heard you had a great 3rd Birthday party at the park today and I hope you know I wanted to be there so badly! Love you Big Girl! HAPPY BIRTHDAY!!
Please keep Madelyn lifted in prayer along with our St Jude friends. Thank you so much for your love and prayers!!
Love,
Brandi
Wednesday, July 20, 2005 3:13 PM CDT
UPDATE: Fri, July 22 9:00AM
Madelyn has now tested positive for a new bacteria from a nose swab done on the 20th. It is MRSA, this is the 2nd time we have tested positive for this and are now in STRICT ISOLATION (gowns, gloves and mask) and entering the hospital once again only through the isolation entrance until we test positive twice.
She is getting blood as well this morning as her Hemoglobin is 7.1. Her ANC is still ZERO and I was just told they want her to stay until her counts start showing signs of recovery which will most likely be sometime next week.
We had such a busy weekend planned... One of our bestest buddies, Miss Brooklyn was having a BIG Picnic Party at the Target House Gazeebo and courtyard for her 2nd Birthday Saturday morning and my sweet niece Abby was having her 3rd Birthday celebration at the park in Milan, TN where they live on Sat afternoon! We were so excited and I am very sad that Miss Brooklyn had to cancel her party due to all of her little friends invited going home or inpatient! So we would like to have a party here for her on the 2nd floor but now with the isolation issue that looks like it is out of the question as well. Ugghhh!
To my girls, Brooklyn and Abby I am so sorry that we are not able to attend your BIG day but just as soon as we are out of this joint (as Madelyn would say!) we are going to have a big party of our own!! Happy Birthday Brooklyn and Abby!!! We love you girls!!
Update Thurs, July 21 9:00PM
Madelyn's stool culture came back positive for Bacillus-a bacterial infection. So they have added another antibiotic, Merapinum (sp?)Apparently, this is a common type of bacteria that appears to be dormant in the normal persons gut but for someone like Madelyn with low counts this bacteria becomes more active due to her immune system not being able to fight it off.
Madelyn has been feeling really well and has played all day painting, doing crafts and hanging butterflies on the ceiling!!
She also received some happy mail from South Carolina(I like to call it FAN MAIL!) making her little face SMILE!!!
We would like to thank our visitors and calls of concern from friends and family today!
Love You all!
UPDATE 6:00 PM
We are now inpatient with a fever just six days after ICE chemo and one day after her counts bottomed out to ZERO.
So we came in and of course did all the routine lab work from each line, a periphial stick, and swabs to check for infections. (they take about two days for results) She did so great with the stick and cried before the stick but when given did not shed a tear and said it did not hurt!!
She has to be stuck everyday with the GCSF shots that I give her while daddy holds her in his lap until her counts recover.
We are on leukemia side once again Rm 2013. Our number is 901-495-5213. Please pray that Madelyn's counts recover quickly and that no infection be present. 
Thank you Jesus for this day!
We love our prayer warriors!!
Madelyn is full of energy today and feeling Great!!
Love,
Neal, Brandi, Tyler & Madelyn
Tuesday, July 19, 2005 4:57 PM CDT
seeing the effects....
Hello to all! Just wanted to give a quick update to say we just had an audiology test today and Madelyn has lost even more midrange to high frequency hearing in both ears but more so in the left ear. So she had her little pink and red swirl earrings (hearing aids) adjusted and Miss Johnnie fit them in her ears and that lasted a whole 30 seconds or so! Not our biggest worry with Madelyn but we will keep trying taking baby steps toward getting use to them!
OK so as we were leaving the audiologist appt i noticed Madelyn had one little tiny red spot next to her eye also known as petikiei (sp?) caused from having low platelets so after our clinic suggested a lab check and well it was a good thing we did! Madelyn's platelets after just five days of ICE chemo were at 10, anything below 20 requires a tranfusion and Madelyn's ANC is ZERO!
You would not know by seeing her that this would be true as she has been going full speed ahead to say the least! She received a pink hat today from some special group of ladies with big floopy hats on handing them out to the kids! They took pics of Madelyn taking off the ladies hats using her long arm clamp that she received out of the toybox today!
Well we are headed to the Medicine room to get platelets so I will update any new information. Please keep Madelyn in your prayers in hopes that this chemo will put her into NED and that we not lose any ground.
We would like to also ask that you keep Ashley at www.caringbridge.org/la/princessashley in your prayers as we just talked to her daddy and they may not be going into surgery as planned at this time due to her cancer in the chest growing and being the main priority to treat so they are heading to MD Anderson in TX very soon for a last resort type treatment. This is a very sweet and wonderful family we have been blessed to cross paths with on our journey here at St Jude. Tyler plays with their son Austin when he can as well! Please visit them and leave them with words of encouragement as they continue to fight for their 10 year old daughters life. Our love and prayers are with you Ashley and family.
Love Brandi
Friday, July 15, 2005 11:44 PM CDT
Finally! Back in her own bed tonight…
We are officially out patient as of this afternoon and Madelyn was so excited!! She has had another great day of laughing, playing, jumping…This past week has had its ups and downs! One minute she is laughing and playing and the next she just cries. I know it was the Dexamethazone (steroid) making her this way but either way it is very wearing on mommy and daddy and those nurses trying to care for her! She will not let anyone but me take her temp or get her weight or change her diaper! With fluids it had to be changed every two hours at most or the bed would be soaked! Talk about no peaceful sleep!
The inpatient part of the hospital is divided into two wings, one side for Leukemia and the other is for solid tumor patients. This time however, we were on the Leukemia side because that was the only bed open at the time of admission and so therefore we had a whole different set of nurses that we had never had before or that had never had Madelyn as well. The use of steroids is not a good first impression lol but they all did a great job of making us feel welcome none the less! Thanks to all the special nurses we had the opportunity to meet this week!
We were able to leave going out on fluids. We will have to hook her up to her line at night. Her protocol called for 24 hours of post hydration but Madelyn’s potassium is elevated making her kidneys not function correctly so they are keeping her on fluids over the weekend and she’ll have lab check again on Monday. She starts the sub cue GCSF shots in her little arms tomorrow. Please pray for this to go well. It should take her about 6-7 days when her ANC will be dropping to a nutripenic state. She will be taking Ondansitron for nausea as the chemo will hopefully be in there working!
NOW FOR BETTER NEWS!!!
We got the results of the MIBG-Madelyn is stable!!! There are NO new spots!!!!! Only the primary tumor spot and the left orbit. We are now just hoping and praying that the ICE she just received will be what gets her to NED!!! Please don’t give up praying for our sweet baby to meet NED and have a COMPLETE HEALING!! I was surfing the net about 3am this morning and came accross the cutest T-shirt that read, Dancing with NED!
Just before leaving the hospital we were approached by Miss Jennifer at ALSAC who ask Madelyn to be part of the Sterling Jewelers Christmas Promotion again this year due to someone unable to attend! This is very exciting as we feel overwhelmed with emotion to see our sweet girl making a difference to people all around the nation!! She along with three other patients had a fun time playing mostly but flashing those beautiful smiles together! Hopefully, you will see Madelyn along with the others at a store near you!! This comes out in late October at many of the fine jewelers such as Kay Jewelers, Marks & Morgan, etc. as you will have the opportunity to purchase one of the bears and support St Jude!! If you see her please pick up a flyer or two and send one to us!!
Yesterday, my mom brought Tyler to the hospital and we had so much fun! Mom got a manicure (of course!) while Tyler and I went to the cafeteria and shared some chili cheese fries! His choice for dinner and how yummy they were!!
Madelyn just loves her big brother!! Often left out at times, I would like to share a little bit about Tyler!
Tyler is 11 years old and going into the 6th grade! He loves Star Wars, Harry Potter and SpiderMan is his favorite superhero! He loves to read mystery stories and is now on his 4th Harry Potter book! He is into history, learning about the presidents and the wars fought feed his curiosity! He also loves to play 2nd base in baseball which he has played since he was 5 years old and football, which he played last year making QB his first year!! Of course, I am so proud of him!! He is a BIG TENNESSEE FAN as well!
He is such a great kid! He will help do chores around the house without complaining and gets them done super fast so he can go back to playing his PS2! lol
He has a big heart for Jesus and his family & friends as he misses his friends from Huntingdon and Dyersburg! He loves to be the jokester, always picking at us and Madelyn and laughing about the silliest things!!
I know that this journey has often been a damper on many things for him this past year, as he did not get to play ball this season but he has continued to amaze me by asking us questions often which makes for special mommy/son talks!! He is growing up before my eyes and I just want him to know that we love him so very much and look forward to every moment we are all together as a family!! Please remember him in your prayers as well as he has had to endure the pressure of not seeing us as much when we are inpatient and that he have comfort and understanding through all of this! We love you Tyler!!
Please pray for a special St Jude friend, Ashley as she is having her leg amputated soon. Please visit them at www.caringbridge.org/la/princessashley
Also another special NB friend, Zack Russo recently had his stem cell transplant and is in ICU for VOD. Visit him at www.caringbridge.org/pa/ilovezack
Please let them know we sent you and they are being thought of!
Resting more peacefully tonight
Love,
Mommy to Tyler and Madelyn!
Wednesday, July 13, 2005 11:08 AM CDT
July 13, 2005
Our St Jude Friend, Cole Walker earned his angel wings here on the second floor of St Jude this evening. Please visit them at www.caringbridge.org/ms/colewalker and let them know they are being thought of at this difficult time.
Bouncing off the walls…
Good morning everyone! I think this is a first for updating so early! Whew…Being inpatient has many late nights up and early morning wake ups! Sometimes I sit back and wonder just how we get through all of this without going insane but I know God is there cradling us through the tough times and walking along side us through the good times! Our prayer warriors and friends are our strength!!
Madelyn started her 10th and 11th chemo yesterday! Even though she received three including Ifosfamide, Carboplatin and Etoposide only the first two are ones that are new that her body has not seen yet. We are hopeful that these chemo’s will do the trick in putting her into remission or NED but not cause additional harm to her little body! Please say a prayer that this will be true!
I usually do not go into much detail on what these chemo’s can cause but for those that have ask or that would like to know more I have listed some of the side effects of these including nausea and vomiting, decrease in appetite, feeling drowsy or confused, hallucinations or seizures (this one is more true in higher doses), bladder damage (they give a drug called Mesna to try and prevent this!), mouth sores (we do nystatin mouth care swabs for this!), hair loss, kidney damage (they give lots of pre and post hydration to help with this! Makes for MANY diaper and bed changes!) hearing loss (she has already lost at least 50 percent in both ears), stomach pain, and low blood counts 7-14 days after treatment (which can cause additional problems like the ones we just encountered this past weekend).
Yesterday Neal’s parents came to play with Madelyn and we were able to get out for some lunch at Cracker Barrel over in W. Memphis, Arkansas and of course a trip to good ole Wal-Mart, do we ever get enough of this store! lol Well, daddy promised to bring something back so there we were looking at toys even when the kids aren’t with us! Lol She just squealed with excitement when we brought back not one but two toys! A Tigger story book for her Quantum Leap pad and a Polly Pockets magic ink activity book!! She loves magic ink and we do too! Lol
I have to say Madelyn has been keeping us pretty entertained for the past two days! She is talking normal now and feeling awesome! The only thing she will eat or drink is her chocolate ensure plus diluted with whole milk but her weight is holding stable at 13.3 kg or 29 lbs! This is in part because of the fluids they have her on as well but hey we’ll take stable any way we can get it!
However, this morning we were informed that her Glucose was elevated and she needed to have her finger stuck to have it checked again. Normal Glucose is around 80-90 I believe but hers is over 300! This is possibly due to the Dexamethozone which is a steroid given for inflammation which can be caused from the chemo. They have taken out the Glucose in her fluids to get this lower! No wonder she has been bouncing off the walls for the past two days!
OK! The results are in!!! We have some wonderful news to share today! Yesterday we got the results of Madelyn’s Bone Marrow aspirates and it shows NED on one side and less than one percent on the other!!!!!!!!!!!!!!!!!!!!!! Neal and I were on both ends of the phone with Dr Dome giving us this information and WOW no words come to mind just a big lump in my throat! I am overjoyed at the great news that the chemos temozolomide in combination with Irrinotecan has been woking so great with Madelyn. Why does great news make us cry our eyes out? Maybe out of pure exhaustion? A sigh of relief? A way of re grouping to keep moving forward? Scared out of our minds is for sure! We are so happy and Madelyn and the Drs, nurses, staff and prayer warriors have worked so hard on getting her to this point and I am so truly grateful and proud of all that’s been done for her that I want to hug everyone I see! And you wonder where I get my strength?! I love all of you!!!
This is why it is so frustrating to us to have to make life altering decisions for our sweet girl when she seems to be doing so well but I know we still have to get this bone marrow CLEAN & CLEAR!!!!
We have MIBG scans tomorrow!
So we are relishing in the great news of the day! Sorry folks but God owns the Glory but please continue to be His messengers!!!
Love to all,
Brandi
Monday, July 11, 2005 11:07 PM CDT
A brighter day…
Hello to all! Yesterday was a day of remembering our sweet Zoie as it was one year since she earned her angel wings. We were joined last night with our St Jude friend Brooklyn www.caringbridge.org/or/brooklyn in releasing a yellow and purple balloon in her memory here at St Jude’s. Our sweet nurse allowed Madelyn to put on a mask and go outside for this special event as she needed a little fresh air anyway! Chastity thank you for the phone call and concern for Madelyn as I know you already had much on your mind Sunday! Dr. Santana says hello!
As for Madelyn she woke up with a slight grin nudging me to look at her! I knew it was going to be a better day! She has however still continued to have fever but let me just say it has been a much brighter day here in room 2023!
First off we had some company, Brooklyn and her mommy who went to Wal-Mart for me. One thing we don’t get while inpatient is time to get a shower especially if you’re by yourself so she did stay with Madelyn while I got a much needed shower! Neal had gone to the Dr this morning and has inflammation in his throat making for a painful sore throat which needed a steroid shot! Ouch! Anyway, I’m not sure if that may have been Madelyn’s problem considering she had not been swallowing for two days so she just drooled. She is still very hoarse when she speaks. If you thought you couldn’t understand her with her paci in before, well you really can’t right now even when it’s out!
I was so worried about her this weekend but I am just not used to colds, congestion, sinus, etc. with her… only big things like Cancer stuff! I know it sounds strange but if that is all it was I am just not used to that getting her down. I usually know right away what the cause of her fever is from, usually chemo or low counts or why she looks or acts a certain way, usually because of a med she has taken!
She has played all day! We did go to the playroom for a bit to play Lincoln Logs, charades and her favorite game of Candy Land! Later, we played Sorry, a roller coaster game that she really likes, we read stories, watched Mary Kate and Ashley shows and Madelyn decided she wanted to make her bed sheets pretty so she used her washable markers to paint a sun, a rainbow, and shapes! The before I knew it she had painted her entire head and face! She has been giggling and being silly some too!
We should be getting the results back from the Bone Marrow Aspirates tomorrow! Also some results of all the cultures taken over the weekend! Please keep Madelyn in your prayers as we continue to move forward!
Thank you for checking in on us and sharing your love for our family! Your love, support and prayers are greatly appreciated!
Notice some of her favorite things have changed recently! See above! And new pics in the photo album!
Love
Brandi
Sunday, July 10, 2005 2:55 PM CDT
Not feeling her silly ole self...
Madelyn continues to have fever every 4 hours. As soon as the Tylenol begins to wear off out sprouts another fever.
Today Madelyn has not felt well at all. We played a game and put some puzzles together but she just feels bad and is very tired and lays around.
The Dr put her on another antibiotic, Vancomycin today along with the Cepipene. Her ANC is up to 3700 today.
A chest x-ray was ordered today to rule out pneumonia. She got to ride down in a wheel chair which she loves to do! So far we now know that the chest x-ray shows clear, and shows her line is in place properly. There has been NO growth on the cultures taken from Friday. Which means possibly NO line infection! The UA is also negative. They have done nose swab cultures today to check for viral infection.
They started her on fluids when we arrived but she has lost a pound since yesterday. She is barely eating or drinking. She has only wanted to eat a bite of yogurt and take sips of chocolate milk with her Tylenol.
Last night Miss Jenny brought her some foam butterflies and she came in a couple of times to help put them together with Madelyn. We have put strings on them and hung them all around the room today!!
Please pray for Madelyn to be fever free and to feel like her silly ole self soon. Please pray that the delay in chemo will not cause the cancer to take control.
Please remember to release a balloon or say a prayer at 6pm CST in memory of angel Zoie! Love you sweet girl!
Love, Brandi
Check out new photos in the photo album!
Saturday, July 9, 2005 1:24 PM CDT
A second day with fever...
For those just checking in we are now inpatient as of last night. Madelyn continued to have fever last night til about 5am. Dr Santana is on call this weekend which makes me feel better knowing he is somewhat familiar with Madelyn and to her diagnosis! Upon examination around 10am Madelyn had fever again. She was given Tylenol and cultures were also done but we cannot start chemo until she is fever free for 24 hours. He does not think it is related to the procedures from yesterday but that maybe a virus is coming on. She wants to go to the play room so much but she can't do that either.
Her grandparents are in today and Madelyn is doing crafts and playing with her Barbies! The happy cart comes by on nights and weekends to keep the kids busy!
Please pray for her to be fever free. We also pray that nothing grows from the cultures and no line infection.
I will update with any new developments!
Love,
Brandi
Saturday, July 9, 2005 0:23 AM CDT
Whew! What a long day/night…
We had clinic visit this morning and thoroughly explained the episode with the fall from last night and they think that maybe she just had the wind knocked from her which is what I believe as well! Anyway, all is well with that, she just has a little bump on the head now!
Madelyn had bone marrow aspirates done today and she was very excited as we all know how much she loves getting the sleepy medicine or “white stuff”! She also had her special and favorite nurse anesthetists, Mr. Georgie and Mr. Horace so she was really a happy camper before sedation! The recovery team is so great, they always cater to Madelyn’s every need to make her feel extra special no matter what her mood may be!
Later, we arrived home happy to see Grandma Sherry who came to visit Madelyn and take Tyler home with her for a few days while we are inpatient! We were also visited by some special Dyersburg friends as well. Miss Donna and Miss Emilee came and all the girls spent some time shopping for Miss Madelyn before her next big treatment. They also had their nails and toes polished by our very own nail tech! I have just come to realize that anyone who visits with Madelyn for any length of time has to have their nails done!
Around 5:30pm, St Jude called to say that a bed had opened up and we are now officially inpatient in room 2023. It seems as if we pack our entire house when we go inpatient as it took two wagons full for all that we needed! We were supposed to start chemo tonight but much to our surprise Madelyn had a slight temp which has continued to rise throughout the night so they have done line cultures and given an antibiotic. We will talk to the doctor in the morning.
We had a visit from Miss Brooklyn and her mommy tonight who brought some very yummy crème filled cupcakes too! Of course they had to have their nails perfectly polished before they could go as well!
Madelyn has been very moody with spells of laughing then crying in an instant. She did not get her nap in today and I think the excitement of company combined with the anticipation of going inpatient has really gotten to her tonight. She did get to see Miss Jenny! Miss Jenny is a very special nurse that we have had from the beginning and Madelyn has become attached to as Miss Jenny is Madelyn’s “Sticker Queen”! They did give her some Benedryl and she is now fast asleep!
Neal went home and will be back in the morning! He is trying to keep his back in the best shape possible and these couch beds aren’t the best for a bad back!
Please remember patient Cole in your prayers as he is very, very sick and not doing well. Please visit him at www.caringbridge.org/ms/colewalker.
Also visit our NB friend Zack Russo as he is in ICU battling VOD after transplant. www.caringbridge.org/pa/ilovezack
Please remember to send a balloon (preferably, purple or gold) in remembrance of our angel Zoie on Sunday, June 10th at 6:00pm CST
I know I have said this many times but I mean it when I say thank you so much for your love, support and prayers as we continue to move forward in getting Madelyn into remission!
Love to all,
Brandi
Thursday, July 7, 2005 8:18 PM CDT
Oh the drama…
Madelyn is for the most part fine with wearing a mask when her counts are down but for some reason today she was not happy with wearing it but she did so through tears. Bless her heart. They were having a Zoo party and Madelyn was much happier when Miss Sarah, one of the volunteers helped her make a raccoon puppet! Thanks Sarah for brightening up her day! We had labs and clinic today after the party and Madelyn’s ANC is now back up to 900!! Yippee!! So when Miss Nicole told her, her counts were up she was an even happier little princess ( I mean penguin!)
The results of her CT scan show STABLE! Stable is good but apparently Dr Furman feels we need to proceed with the next step which is trying a harder chemo….tomorrow. WOW, I was not prepared to hear that but I have to believe that they understand this process better than anyone else (Medical field that is!)
So Madelyn will be sedated in the morning and have her bone marrow aspirates and biopsy done and then if a bed is open she will be admitted for the next 4-5 days to receive her inpatient chemo.
They are going to give her ICE. This should be harder on her counts and she will most likely lose the little bit of hair (fuzz) that she so desperately has longed to have! We were just getting used to putting those hair bows back in! Please pray for this chemo to be effective and not cause any problems with her organs. The goal is to get Madelyn in Remission or NED (No Evidence of Disease). For this to happen we have to get her bone marrow clear of tumor cells.
Now for the drama part of the night at around 4:30pm Madelyn fell into our wooden glider rocker bumping the front right of her head. I knew she was about to scream so I picked her up to hold her close but no scream came out. I dipped her little head back holding her like you would a newborn baby. With her eyes wide open she held her arms straight out and her hands curled in and shaking. She was not responding. As I screamed for Neal to come call the hospital she came to and started to clinch me tight and just screamed and cried. Then she was freezing cold. We wrapped her in a warm blankie and immediately I called our nurse.
She was fine after settling down and even played I spy all the way to St Jude. They ordered a CT scan and all looks well with that! What an episode! We are all okay and settled down now. Madelyn is taking a nap and we were told to arouse her through the night and watch her. They did find two tiny white spots (unrelated to the fall) on the back of her skull (which was not evident when compared to previous CT’s) but could just be calcium deposits. They are checking with the radiologist to see if they want to retest her tomorrow.
Please keep us in your prayers as we continue with a new step in our baby girls’ treatment. Please sign our guestbook as it is what helps us get through our journey!
PS Thank you to Jeff, Amy and Will Breedlove for inviting Madelyn and I to see Herbie with you guys at the Peabody! Even though Madelyn slept through the show it was still great to be out and about with our dear St Jude friends! Please visit them at www.caringbridge.org/tn/ryanbreedlove and let them know we sent ya and they are being thought of!
Love, Brandi
Tuesday, July 5, 2005 7:48 PM CDT
Another great weekend at the Beamon Household!
Needless to say, Madelyn has not let counts of just 200 stop her from playing her little heart out!! Even though the weekend was supposed to be spent in the Great Smokies we opted to stay home and boy we are sure happy we did!
We took the kids and our St Jude friend, Brooklyn and mom to ‘Home of Throwed rolls’…Lambert’s Café in Sikeston, Mo this weekend! Apparently the Pacific Northwest is not up on our deep Southern homecookin such as sorghum, okra, dumplins and such! HEHE What an experience it is to be with this family! This summer has sure been an experience to remember from both sides of the spectrum of course! We have been spending a lot of time with this family and it means so much to us to have such a special bond and friendship with them and having the many fun and happy memories to carry us through our journey!
We also got together a 4th of July party at our apt for what turned out to be another great memory for us and our kiddos! We also had the good fortune to share the fun times with another dear St Jude family, the Schexnayders as they were in town for the weekend!
Everyone at the party got a Manicure and pedicure as Madelyn painted everyone’s nails bright red, a gift from Zoie’s collection of nail polishes! She even charged them all a dollar for her services! Madelyn was so wired and fun lovin’ all night as she was so excited to see everyone!
After midnight, the kids enjoyed snap n pops and silly string on the front lawn! We had so much fun visiting with this family and always learning more of sweet Zoie’s legacy! They will be back in November at the RMH along with Zoie’s Angels (an organization created in memory of Zoie which delivers packages to RMH kids for the holidays and continues to keep her story alive!).
This Sunday July 10th marks one year since Zoie went to be with Jesus. Please be with their family in prayer and remembrance at 6pm CST as they will be celebrating her life with Jesus on this special day and sending balloons in her name! We love you and miss you Zoie! Please visit them at www.caringbridge.org/la/zoie
We attended a Red Birds game on Monday night with the intentions to watch the fireworks show but around 8:45 pm the sky turned black and down came the rain! So the only fireworks we seen this year were some as we were leaving Lambert’s on Saturday night from afar!
Madelyn had labs today and her ANC counts are still at 200 which means her having to wear a mask everywhere. She had a CT scan this afternoon which we may get results Thursday during our next clinic visit. We have to be there most all day tomorrow starting at 8am for a test that checks how well her kidneys are functioning due to them wanting to start the new chemotherapy ICE sometime soon.
I am still uneasy of this treatment as it works with some and for some it is like giving water. It is also harder on the body affecting the bone marrow and her counts along with the potential of harming the kidneys. I so desperately want to find a better match for our sweet girl as I believe in time this will be the most effective treatment option. Please get on the Bone Marrow registry as it only requires a little blood taken from the arm. I am going to soon post all the specs on donating! Please keep her lifted in prayer along with our St Jude friends!
Love,
Brandi
Saturday, July 2, 2005 10:28 AM CDT
Good Ole’ Memphis…
Well I just wanted to let everyone who thinks we are in the mountains know that unfortunately plans had to be changed! It’s OK since we are very used to last minute changes when being a cancer patient!
After our lab check on Thursday and clinic visit, Madelyn still had a low ANC. As the doctors knew how much we really wanted to go on this trip they even printed out hospital information and a map of the Children’s Hospital of Knoxville and we had all plans in place from here to there in case Madelyn developed a fever. They told us that by looking at her labs her ANC was on the upswing. However, as I was driving home Thursday, I could not get an easy feeling of taking Madelyn 6 hours away around crowds of people, even with a mask on, and feel safe. So we opted to cancel hotel reservations and spend our 4th of July celebrating at home in Good Ole’ Memphis, TN!!
We found out that Zoie’s family will be in town for the weekend and we are hoping to spend some time with them one night!
Looking back to last year at this time, Tyler, Madelyn and I watched fireworks from the fifth floor of the Memphis Grizzlies House!! We were doing outpatient chemo then. This was also a time when we were spending time with the Schexnayder family as their sweet Zoie was fighting for her life with Jesus. This was the first friend we had lost while at St Jude and the first we had lost with the same diagnosis as Madelyn. We have since lost six to NB that were our St Jude friends. We miss you lots Zoie!
Dad had a nice birthday! I finally got that homemade chocolate cake made for him!! HEHE and the kids and I made him a five page Birthday card out of colored paper filled with drawings, stickers, and favorite photos! The kids had so much fun drawing a coloring their very own page and picking out a favorite photo of them with dad to complete the page! Tyler drew Dragonball Z and Madelyn got ‘three pages’ somehow! She colored a rainbow (her favorite) complete with clouds, rain, a pot, grass and a flower! Everything on the page was rainbow colored! She did a little girl with all hearts page and a page with cupcakes balloons and presents!! It was really cute after hole punching the sides and tying with yarn string! OK so now I guess I’m getting the kids into scrapbooking as well!!
We went with our St Jude Family Miss Brooklyn and her mommy to a nice restaurant for dinner.
We took the kids to see Herbie last night! Let’s just say it is a FUN movie to watch! It was a packed house as we had to sit on the very first row! Madelyn took off her mask and sat in her seat or with me under her Strawberry Shortcake blankie and just laughed and said, “that car is crazy!” We then went to try and rent the old Herbie movies after the show but apparently everyone else had the same idea!
Madelyn is feeling great and very active! She does not look or act like a child with low counts. Her blood and platelets were fine on Thursday’s visit and her weight was up from 12.3 to 12.5! We have been putting Duocal (a white soluable powdered energy source containing a blend of fat and carbohydrates) in her chocolate milk!
Please pray for Madelyn's counts to recover quickly but that the chemo continue to keep working! We are starting all Madelyn's scans on Wednesday!
Love to all,
Brandi
Thursday, June 30, 2005 0:06 AM CDT
Happy Birthday to you! Happy Birthday to you! Happy Birthday Dear Ne-al! Happy Birthday to you!!
We love you lots dad!!
So today is Neal's birthday and as soon as he walked in the door today Madelyn says, "we're going to the store to get stuff for your birthday cake!" "We made you a card!" It was just priceless but what happened to our secret?HEHE
Oh well! It's not the first time she's told surprises!! Last year at Christmas she told dad where we had been that day knowing good and well I would not have been in that store for myself!! We try to explain the meaning of surprises but we just have to laugh, she is so sweet about it! She is so funny!! We just love her so!
We have been enjoying our couple of days off just playing, scrapbooking and resting at home! Madelyn has been feeling really good. She is active and being her silly self! Tyler has been Jedi fighting all around the house making them both a hand full!! Madelyn and I tried to make Neal's cake tonight and since we didn't add the water well...let's just say I scraped it down the garbage disposal! I'll try it again tomorrow should we not be at the hospital long!
We have lab check and clinic with Dr Hartford on Thursday. Her right eye has become red and puffy again. We put a warm compress on it which seemed to help some. We are hoping her weight has gone up some since Monday as it was down from 13.1 to 12.3. I think the drop is from much activity over the past weekend!
We are planning a trip to the Smoky Mountains in Gatlinberg for this weekend should all be well with Madelyn. We hope and pray for all to be well so that we can all enjoy a funfilled holiday weekend away together!
Thanks for checking in on us and please remember to get registered on the National Bone Marrow Registry in honor of Madelyn!! WE ARE SEARCHING AND WAITING FOR A BETTER MATCH FOR MADELYN AS TIME DRAWS NEARER TO DISCUSS OPTIONS WITH OUR DOCTOR AFTER THE HOLIDAY WEEKEND! MANY KIDS WITH CANCER AND LIFE THREATENING ILLNESSES ARE IN NEED OF A BETTER MATCH! PLEASE GET REGISTERED NOW!! The number to St Jude is posted at the top of our page or you can call your local blood or marrow center!!
Thanks for your continued support and prayers! We thank you for signing our guestbook and look forward to hearing from all of you!!
love Brandi
Monday, June 27, 2005 10:11 PM CDT
Long but fun filled weekend...
Needless to say we are living life to the fullest! Madelyn finished up her 6th round of Irrinotecan/Temozolomide chemo on Saturday then her and dad headed to Huntingdon for a fun filled weekend at Granmonna and Pa's house! They played games, read stories and made Madelyn's favorite homemade strawberry icecream! They all later went to her aunt and uncles home in Dickson to swim in the pool (of course, Madelyn couldn't get in but she did get to ride on a really cool whale and turtle float!)
Sunday they visited Burn's Church of Christ while in town and got to visit with some folks they hadn't seen in a while! This church is one that we have visited several times before when we are in the area. They have continued to send us words of encouragement often and we thank them!!
Tyler and I had some great fun back here in Memphis as we went to lunch with our St Jude friend Brooklyn and her mommy on Saturday. He picked out a Star Wars PS2 game he had been wanting and then went swimming!
We also had a fun day at LibertyLand on Sunday afternoon! I hadn't been since my mom took me when I was his age! This is one of the many experiences offered free for St Jude patients and their family!
For the first time since we began our journey with cancer, Madelyn is Medication Free!! We are very thankful for this! It's just so amazing and exciting to feel and be so 'normal' for a change!! The only thing right now is her ANC is only 500 which means her immune system is low and has less chance of fighting infections so she has to wear a mask out until this rises. She also had to have blood this evening along with her once a month antibiotic which made for a very long day at the Jude!
We will have clinic again on Thursday so I will update again soon but as for now we are busy enjoying happy times out and about and my newest love of scrapbooking thanks to Miss Danielle!
Thanks for all your love and prayers!
love, Neal, Brandi, Tyler & Madelyn
Wednesday, June 22, 2005 10:40 PM CDT
Hi there everyone!
Things have been running pretty smoothly during this round of chemo! Madelyn has been her playful, energetic self! She has been quite silly most all of the time to be honest! Yesterday in the Medicine room she spray painted all the nurses hair with glitter spray then told them they were all princesses now!!
Madelyn was asked to participate in a National TV campaign with Marlo Thomas today along with some of our other St Jude friends!
Marlo ask Madelyn her name and she simply said, "Monkey!" Marlo ask what is your real name and she said, "Monkey!" Marlo ask, that's your real name? and Madelyn said, yeahes, in her southern belle voice nodding her head up and down!! LOL I don't think Marlo ever did know her 'real' name!! But hey, she'll always remember she met a monkey!! HEHE
The ad will begin running this fall! Look for her wearing a bright pink outfit with tiny light pink polka dots with a pretty kitty on the top!!
It was nice to see some of our St Jude friends we haven't gotten to see in a long time!!
We continue with chemo through Saturday and will be off the following week with the exception of a couple of routine lab visits.
I know an urgent email was sent out by a special St Jude mom but I just want to assure everyone who received the email that her intentions are ALL GOOD! I have already spoken to her and wanted to let those that are coming to our page from this email know that we are NOT at ends with treatment options as thought in the email!! However, we are still looking for a better match should we need to go that route! We just have more time to get folks registered now that we have decided to keep on with the chemo we are doing for one or two more rounds. After scans in a few weeks we will know more!
Please remember to get registered on the National Bone Marrow registry if you haven't already as it takes 2-4 weeks to actually get on the list!
Thanks so much for your continued love and support!!
We look forward to hearing from everyone in our guestbook!! It is a huge comfort to know we are not walking through this alone and that our sweet girl is being lifted in prayer by our mighty prayer warriors!! Thanks so very much!!
Love to all,
Neal & Brandi
Monday, June 20, 2005 2:33 PM CDT
Hello to all!
Madelyn had a fun time visiting her Grandparents in Huntingdon this weekend. Her great aunt Earline and Spanky and Rhonda were in from North Carolina as well! I know she had lots of fun playing her princess games and being read to!!
Neal and I took a trip to Nashville with some close friends of ours from Bruceton. Thanks Josh and Jana for going with us we had such a fun time! We went to Chaffin's Dinner Barn and theatre to watch the comedy play Goodbye Charlie! Let me just say it is well worth the drive!! For those that may know Nina from the Young & Restless, she plays Charlie!
We are off today from St Jude and will start the second week of chemo tomorrow. Madelyn is feeling so good and has much energy!!!Thank you for all your prayers being lifted for our sweet girl!!
New photos in the photo album today!!
Love to all!!
Brandi
Friday, June 17, 2005 4:46 PM CDT
Hello everyone!
I know its been a long delay...I'll try and do better!
First off, I had a wonderful 30th birthday dinner on Wednesday night with my mom, family and a couple of St Jude families as well!! I think the Carebear cake was a HIT!!(That was sweet Madelyn's idea for her mommys cake!)Thank you everyone for your guestbook messages and phone calls, for making the big 3 OH so special!
Tuesday Madelyn started her 6th round of Temozolomide and Irrinotecan chemo outpatient in the Med room. We will be off Sunday and Monday and start the second week of this round again on Tuesday of next week.
She has been feeling really, really well! She has been chipmunk most all week but today she shortened it to Chip! We are only on Ondansitron and Cifixime, an antibiotic given with Irrinotecan.
She gets hooked to a bag of fluids for 12 hours every night to keep her well hydrated!
GOOD NEWS ALERT!
Madelyn had her catacholomines or HMA's and VMA's tested again and they have went down to almost normal!! This is a urine test which is a tumor marker for Neuroblastoma. So this is a very good indicator that things are staying STABLE!!
We are still continuing the search for a better bone marrow match should Madelyn need to go this route. We will keep you updated on the next bone marrow drive that we will be having. Also you can get registered at St Jude's by calling the above number! Thank you to everyone who has been so supportive in this issue! You are very special people and we are very blessed to have you in our lives and helping in our fight against this terrible beast!
Please continue to keep our friend Bella and her family www.caringbridge.org/fl/bella in your prayers as they will be getting results of her PET today.
Love to all,
Brandi
Tuesday, June 14, 2005 9:51 AM CDT
Hello everyone!
Our decision revealed...
First of all we have a special prayer request for a sweet St Jude friend of Madelyn's. We met Bella on February 2, 2004 as Madelyn was having her line placement surgery Bella was having her port removed. She has been in remission and continues to do so. She had scans yesterday that showed a spot and is having to stay in town a few extra days to have more testing done on Wednesday. Please visit her site at www.caringbridge.org/fl/bella and learn of this little girls journey with Stage IIIa Malignant Melanoma.
Getting scans done in general is always tough. It is scary to think that at any time you may have to restart or relive that journey all over again. My heart is with them and we are praying.
We all went to dinner last night and the girls had such a great time together. Back at our apt they played dressup and danced around the room for us all! So sweet!
We met with Dr Furman on Monday and let's just say the Dr's points of view have been made and this is our decision...
Madelyn is feeling so good! She looks wonderful! She eats well, talks well, walks well, laughing most all the time, just plain full of life!!
Dr Fuman feels that she is doing extremely well considering our episode in November on the vent. From experience and history shows that she should not be here at this point. However, the chemo we are doing, Temozolomide along with Irrinotecan is proving to not only keep her stable but it is WORKING! Priase God and Glorify His name!
AT THIS POINT...she is have great quality of life and we do not want to upset that! We are starting this chemo again today. I am not sure when we will do scans but I believe it will be in about 3 weeks (after this round) then we may alternate with ICE only if we need to. By doing this it is not in his words, "Burning any bridges". We will still be able to do the transplant later if we need to. We feel so much more comfortable with this option and a peace with this decision.
We have also found out that one of the two NB patients who underwent this Haplo transplant after doing more intense research did pass away with having cancer in the body. (They still died of complications and not cancer but it was present after more intense research) This is heartbreaking but also this made the decision clearer for us that ultimatly they still do not know what works.
Please continue to keep Madelyn lifted in prayer and our St Jude friends as well. We love you guys.
Love Neal & Brandi
Sunday, June 12, 2005 11:07 AM CDT
Hello to all!
So we had labs and clinic visit on Friday. The diarrhea has subsided and we are officially out of isolation!! Her hemoglobin and platelets are going up, up, up!! Her ANC is down a little from 1200 to 900 but still normal for her! Her right eye continues to be a little bit red and puffy but just told to use warm compresses for now.
We are still praying and hoping for the better decision to come to us but still we have no answer or real gut feeling either way. The decision we face goes without saying…it is tough. It breaks my heart that our daughter is so full of life and looks and feels so good and then we have to do this to her little body. How do you make that decision? All that we really want to do is love on her and give her everything she wants!
She was so sweet the other night as I was so exhausted and laid on a make shift bed in the floor Madelyn sat beside me to color and she would just rub my hair and say are you tired mommy, so you want me to rub your head? I love you mommy. It’s going to be ok, I ‘m right here and I’m never gonna leave your side! WOW! What an amazing little girl! I just love her so. She is just a pure joy!
We spent some time with our sweet friend Brooklyn Friday afternoon riding the carousel and out to lunch! My mom, brother Chawn and sister-in-law Melissa and niece Abby along with my aunts Donna, Vickie and uncle Ali all surprised me with a 30th birthday dinner on Saturday night! My actual birthday is June 15th! I received some great gifts and a fabulous cheesecake but what’s up with that black over the hill candle? HeHe I’m really not buying the “It’s what we already had thing!” Needless to say we (they) had a big laugh and a fun time!! Thank you all so much for starting my week off great!! You know it takes some time getting used to these BIG milestones! So why not just celebrate the day for a whole week!! Today, Madelyn and Tyler are heading to Huntingdon for a visit and I am going to spend the entire day with St Jude mom, Danielle as we are getting makeovers, mainicured, pedicured, alittle shopping and dinner! WOW! I won’t know how to act without the kids for an entire day!
I believe we are going to dinner on Monday night with a St Jude family and dinner with family on Wednesday night and as I was talking to a friend over the phone about next weekend, Neal spoke up and said for me not to make ANY plans! OK so I guess I really will be celebrating all week long!!! I’m starting to get used to this 30th birthday after all!
We start the 6th round of Temozolomide and Irrinotecan on Monday. We have clinic visit with Dr Furman so I hope to get more details of his ideas regarding transplant or chemo then!
Thank you for all your continued support, love and prayers as we continue to mull over decisions. We love you guys!
Love, Brandi
Thursday, June 9, 2005 11:50 AM CDT
Hello to all,
This is a long one! Much but important information!
We talked with one of the transplant Doctors. Dr. Barfield, Monday June 6 from 2:15 until nearly 4PM regarding our options for Madelyn. I will try and do my best to describe this meeting. We can do one of two things: 1) We can do a Haplo identical (parent) transplant. This is where Madelyn would be given 3 chemotherapies including Cyclophosphamide, Thiatepa, and Melphalan for one week. This is to “kill off” her ENTIRE immune system. She would be injected with the parent donor stem cells and the days after are what is considered the Immunotherapy as she will have been given the parents immune system complete with a new blood type and all with the parent stem cells! Madelyn has not had MIBG therapy which has actually been done away with in Germany and kids from here at St Jude are not being sent to Philly (CHOP) unless requested at this time. They would not consider this transplant if she had unless requested. They believe they have learned many things by studying two NB patients that have had this Haplo-identical transplant. Their HOPE is to eliminate the severe side affects of Graft vs. host Disease (GVHD) in stages III or IV by giving Microphinalate (MMR) & Cyclosporin (CSA) at the start of giving chemo. (SP?) Some GVHD is ok and needed but only in the first or second stages. What they want is Graft vs. Tumor (GVT) meaning the parent stem cells or (graft) to fight the tumor in the body. The key is keeping the GVHD under control while the graft or parent cells kill the tumor.
Apparently, the two NB patients undergoing this therapy went into this transplant with one 70 percent in the bone marrow and the other with 10 percent in the bone marrow and afterwards for the months leading to their death were cancer FREE. However, by learning what might have caused this severe GVHD they can change what is being done for other patients.
From what I understand the MIBG and the Fluderabine both deposit large amounts of iron overload in the body causing many complications including small vessel damage, venal reclusive disease, cardida all of course life threatening and therefore by eliminating these and adding microfinalate and cyclosporine at the start of chemo this can be helped.
They do have evidence of ONE patient, not at St Jude, that was dx with Stage 4 NB at four years old, had this same Haplo transplant and after 18 months post transplant showed no sign of cancer and has lived cancer free for 3 ½ years with no sign of relapse. I have this article on hand if anyone is interested just email me and I will email it to you! I must re-interate that this is only ONE patient that the doctor knows of and does not constitute a study. He had no MIBG treatment and had been through treatment and a stem cell transplant that failed which is similar to Madelyn’s treatment plan.
FYI: THEY ARE GOING TO RECHECK THE BONE MARROW REGISTRY IN HOPES TO FIND A BETTER DONOR MATCH BEFORE PROCEEDING!!
2) We can continue with chemotherapy until Madelyn’s body has had enough. If this is the decision we make then it would be going inpatient and doing I.C.E., a combination chemo that can affect the organs. It is hard on the counts as well, making her body weaker.
They are not going to do this chemo until we give our decision because they do not want her weaker should we decide to go with transplant. So as of right now on Monday we will start our 6th round of chemo that we have been dong since Dec. which is less harder on the body and will do scans afterwards but as you know this can change as we may have our decision by Fridays visit.
We know there is no cure for what we are dealing with. There is no evidence that anything we do will CURE Madelyn. Research and history has showed that patients with stage 4 NB diagnosed after age two will relapse. This is very disheartening but it is the sad hard truth of this horrible illness and trying to make these decisions is a very difficult process to mull over. In our case, Madelyn has not even scanned clear thus making it even easier for this beast to blow up. We believe in prayer and we love the Lord and believe that He already has this planned out and has His hand in all of this.
SPECIFIC PRAYER REQUEST FOR MADELYN:
-Please pray that Madelyn’s cancer will continue to stay stable as she continues with treatment.
-Pray that we, her parents, have peace and understanding as we make life altering decisions for our little girl.
-Pray for our son Tyler to have this same peace & understanding of his little sister’s illness.
-Pray for the doctor’s & nurses of St. Jude to have strength, knowledge & compassion as they care for Madelyn and make decisions regarding her care.
-Pray that God’s will be done and that His name be glorified!
Madelyn and I have had the last 3 days off but just resting and playing. Tyler will be home this weekend! Daddy started school on Monday at University of Memphis. He is going back for another degree but this time in Nursing as he wants to be a nurse anesthetist. He had wanted to go into the medical field out of High School but opted for computers and now our little Madelyn being the inspiration behind his motivation wants to do this more than anything! So back to school it is!! We know daddy you will do well, WE LOVE YOU and are behind you 100 percent!! As Madelyn told him the other day when he said he had to get back to studying! “YOU CAN DO IT!”
Madelyn has been feeling tired and laying around watching her favorite movies! We had a girly day yesterday as we painted each others nails. Mine was a site to see and hers were all shades of colors! We had a visit from Granmonna & Pa yesterday as well. She was excited and played Princess Monopoly for a little bit then tired very quickly and took a nap. Afterwards we spent some time with Brooklyn and her mommy!!
Madelyn has completed all NEGATIVE testing for MRSA!!! They did cultures every two days instead of once a week! However, she started having the diarrhea again on Tuesday so we took in a sample that night. We’ll see on our visit Friday if it is anything.
She started having the red puffyness of the right eye again on Tuesday as well. So we are putting in eye drops for this.
Please keep our dear friend Emma Grace and family in your thoughts and prayers as they prepare for their daughters life celebration service this weekend.
Please visit her site and leave her parents and brother words of encouragement at www.caringbridge.org/ar/emmagrace as she had a long hard fight with Neuroblastoma.
Until we meet again,
Brandi
Tuesday, June 7, 2005 11:57 AM CDT
With a very heavy heart I have to tell you that our sweet little Miss Emma Grace has went to cheer with Jesus. Please visit her site to learn of her journey and fight with Stage 4 neuroblastoma and for details of her arrangements at www.caringbridge.org/ar/emmagrace. We love you girl!
I will journal soon of our visit with Dr Barfield yesterday ironically, Miss Emma Grace's transplant doctor as well.
Love,
Brandi
Sunday, June 5, 2005 9:58 PM CDT
Life full of blessings!
We have received a tremendous response from so many who have either already gotten on the bone marrow registry, have made an appointment, or donors that were inspired to come to the drive on Saturday to get registered and it is very humbling to see that there are so many people that care for Madelyn and our family! You guys are the best circle of friends anyone could ever ask for! We love all of you and thank you from the bottom of our hearts!! To our friend Keri Stewart, I know you do not want any praise but thank you for organizing this drive in honor of Madelyn! There were many others who had their helping hand in making this a success and we thank you even though we were all trying to learn how and where to start but we did get through it!!!LOL You all know how special you are to us!!
We had a good steady turnout and received enough donations to cover another 70 plus donors for FREE should we do another drive!!! Madelyn now has an account set up through Heart of America so the extra money was put into that account so that it will be there for future drives in her name!! To all who gave a donation we thank you so much!
We hope so much that one of you are the better or perfect match for our sweet baby girl! If not, please know that you have made a wonderful contribution in your life! I know that I speak for every family, child and adult out there that has ever been in need or will need a transplant when I say you are a gift to us because you are trying...By doing this you tell us you care and you value life!
As parents we want nothing more in life but to see our children grow up, go to college, get married, have children of their own....I feel so blessed to have Madelyn and Tyler. Everyday I thank God for them and now more than ever I embrace my time around their every need and I suppose I am aliitle flustered, confused and apprehensive about our future and I can't seem to get it through to people how important this really is! I want to scream I want someone anyone to be a match for her so bad...I wish there was a law that said everyone had to get registered. I never knew the need myself til now, I'll admit it I never even knew the importance of giving blood until now. I remember looking back when I worked as an insurance agent in McKenzie, Mrs Jim Alexander came in one day and told us about going up to the local blood drive and I was too scared to get stuck and now I just want to scream and cry for not going that day. I feel so guilty I did not go. Sometimes I feel this pain I'm having to go through today is a result of what I once did not see. I get so angry at myself for not taking the time to understand and now I find myself trying to educate myself and others on how, when, where and why giving is so important.
OK, sorry, enough of what I'm going through. Madelyn has done exceptionally well with this last round of chemo I believe due to her being hooked to fluids at night! She says she's hungry most all day long but still eats little at a time! So I say this and then today she got up playing with her Grandma Sherry (she spent the weekend with us!) laughing and playing so I did not think she needed her nausea medicine. So later while sitting in the movie theatre watching Madegascar (moderately funny movie!), she got sick but then of course felt much better and did not want to leave! However, she ended up sleeping through the last 30 minutes!
Tomorrow we will have our blood checked in isolation of course and then an appt with the transplant doctors at 2:15. Not knowing yet if we have a better match we are going to discuss everything we need to know regarding the Habloidentical transplant or parent transplant which may still be an option for Madelyn. I know that our primary doctor and Neal & I have been against this type of transplant on Madelyn but we feel we must know every aspect of every option before we make any decisions to go further.
By the way, This week alone Madelyn has been porcupine, bunny, now monkey! WOW! Her name is getting harder and harder to remember! Does anyone else go through this with their kids? Really, I'd like to know!!LOL
She got a new Build a Bear Kitty cat today, her name is Serafina! You can bet she'll be a cat soon as she has primped & snuggled with her all night!!
We are so thankful for all of our wonderful friends and family and thank you for your love, support and prayers.
Love,
Brandi
Friday, June 3, 2005 8:51 AM CDT
Information regarding the Bone Marrow Drive Saturday June 4th !
Here is the address and information regarding the Bone Marrow Drive held in honor of our daughter Madelyn! Cordova Taekwondo, 2965 N. Germantown Pkwy, (Shops of Wolf Lake). To get directions you can look up the location from your starting point by going to Map Quest, Yahoo Map, etc! Thank You!!
I know that I have sent emails with information that the drive is free. I apologize for this as we are still trying to get sponsors to cover the costs of donors but at this time there is a fee which will go to NMDP, National Marrow Donor Program. Any donations at the drive will be greatly appreciated as it will help to cover cost of the drive. I WILL UPDATE FRIDAY EVENING WITH ALL THE INFORMATION I HAVE REGARDING THE DRIVE>>>STAY TUNED!
The drive is being held through Heart of America and it will only take about 15 minutes. You will continue to be on the National List until age 60! SO THIS IS A ONE TIME THING TO DO ONCE YOU ARE ON THE LIST YOU STAY ON!!!! They will be checking the list right before Madelyn is ready and hopefully we will be able to get a better match for her!! Please know that this can be a life saving gift for someone in need and it only takes a little of your time just once to get on the list!
REMINDER:
I also want to remind those that are in the area but cannot come on Saturday, June 4th to please call St Jude at 495-3300 or 1-866-2STJUDE, ask for the blood center and make an appt. If you give one pint of platelets they will put you on the National Bone Marrow Registry as well!!
If anyone has ANY questions at all please email me at bpbeamon@yahoo.com Thank you!
Madelyn is doing better! She has tested Negative for the C-Diff!! We are waiting for results of the MRSA culture from Tuesday. She had a sty on her right eyelid last night but was told just to watch it! The doctor prescribed eye drops for her today. Thank you for your continued prayers and support!
Love
Brandi
Wednesday, June 1, 2005 10:39 AM CDT
What a long day we had!
I journaled from the Jude last night and apparently because of the caringbridge construction it did not go so let's go over this again!! HeHe
We spent almost the entire day at the Jude. As you know we have to be in isolation while at the hospital due to a fungal infection, C-diff. Well, we had clinic and lab work done in the Med room because of the isolation issue and Madelyn has also tested positive for a bacteria called MRSA. Now we are in strict isolation, No contact with other patients and the worst part so far is that she has to test negative 3 (THREE) times IN A ROW before getting out. UGHHHH! According to some nurses it could take months to get over this. About 30 percent of normal people test positve for this in cultures but it is not harmful but for kids who with immunosuppressed systems it can be very harmful! They will check her stool once a week. I am sad that we are going to miss so many things going on around the hospital for the next month at least.
Please pray that Madelyn's little body recover quickly from these bacterial infections and that her immune system will remain well for her to keep moving on through her much needed treatments.
Madelyn has been feeling good with the exception of occassional, severe abdominal pains either from the C-Diff or the Irrinotecan. She has, however, started the diarreah last night which has always helped this pain subside!
Also last night her hemoglobin was down to 7.4 so we stayed an additional five hours for blood! We played Princess Monopoly, read stories and she and mom got a nice nap in and she felt so much better and her color looked better!! She still continues to be her silly ole self as she insist that she is Monkey for the past few days! (hence the birthday ticker!) It is so bazzaar but she will never answer to her real name and will continue to correct you each and every time!
I want to thank everyone who has emailed me with questions regarding the BM drive! I hope I have answered all of them for you! For those associated with St Jude or in the area I want to encourage you to make an appt at St Jude's and give platelets to get on the registry as St Jude children are always in need of platelets and we are concerned with you getting registered on the National Bone Marrow Registry!! Thank you so much! You are really doing a very heroic thing by getting on this list and hopefully may even be able to one day save a life!
Many blessings to all of you!
Madelyn's Mom
Sunday, May 29, 2005 2:00 PM CDT
Hello to all!
FIRST OF ALL I NEED TO START BY SAYING WE ARE HOPING TO GET BUSINESSES OR ORGANIZATIONS TO HELP SPONSOR DONORS TO COVER THE COST OF THE BONE MARROW DRIVE. HOWEVER, AT THIS POINT WE HAVE ONLY GOTTEN A GRANT WHICH WILL COVER THE COST UP TO $25.00 FOR THE FIRST 100 PEOPLE. THE COST OF MINORITIES IS ABSOLUTLY FREE ANYWAY-DUE TO NEED! I AM SO SORRY THAT I DID NOT EMAIL OR POST THE MOST ACCURATE INFORMATION BEFORE BUT WE ARE WORKING ON THIS COST ISSUE!
SO THE FIRST 100 DONORS IS A COST OF $25.00. PLEASE DO NOT LET COST INTERFERE WITH GETTING REGISTERED AS WE ARE HOPING TO GET MORE FUNDS BY NEXT WEEK! IT ONLY TAKES 15 MINUTES OF YOUR TIME AND YOU WILL BE REGISTERED UNTIL AGE 60!! PLEASE KNOW THAT MADELYN AND MANY OTHERS ARE IN NEED OF A TRANSPLANT AND THEY NEED THE BEST MATCH POSSIBLE FOR THEIR GREATER CHANCE OF SURVIVAL.
IF THERE IS ANY BUSINESS OR ORGANIZATION THAT WOULD LIKE TO HELP SPONSOR DONORS FOR THIS DRIVE AT A COST OF $65.00 EACH PLEASE EMAIL ME AS THIS IS A VERY IMPORTANT CAUSE TO OUR FAMILY AND THE MANY KIDS AND ADULTS WHO ARE FIGHTING FOR A BETTER CHANCE AT LIFE.
THANK YOU!!
Madelyn has been feeling really good this weekend. She tested positive Friday for C-Diff which is a fungal infection that is only contagious through the stool. She does have to be in isolation at the hospital. Such a bummer! They took her off of Cefixime and started a new antibiotic, Flagile which helps treat fungal infections like C-Diff better.
We did not have to be hooked up over the weekend with a bag of fluids but will start back on that Monday as well as starting the chemo and also another antibiotic that will be IV which is taking the place of Septra, an antibiotic that she has not been able to take in a few weeks due to the particular chemo she is on.
We had a BIG day Saturday. Mommy, daddy & Maddie went to the mall for a carosel ride and daddy and Maddie spent some time shopping for Nelli and Strawberry in Build-A- Bear! This store makes her so happy!!
We had some friends from Dyersburg come visit and take us to dinner last night! Thank you Miss Donna and Emilee for treating us and Madelyn to such a happy time!! We had Chinese at the Red Sun Buffet in Collierville and they have a balloon guy there every Friday and Saturday night so Madelyn enjoyed watching him make her a special flower hat and a love heart centerpiece for our table!!
During dinner I received a call from a special St Jude friend that they were headed to ER at Laboneur. Poor Brooklyn had fallen into a table and split her little nose and the poor little baby had to be strapped down like a burrito to get her needed stitches. (Not a happy camper!) We were there til 2AM, what a night! Please visit her at www.caringbridge.org/or/brooklyn.
Today Madelyn and daddy had a fishing trip planned with her Grandpa so they headed out for hopefully a very adventurous but safe day!!! She got on her fishing clothes and of course her newest pink, sparkly Princess flip flops, her fishing pole from Fishin’ Galore and her tackle box, sunglasses and sunscreen and she was rarin’ to go!!
Thank you for keeping Madelyn and all her St. Jude friends in your prayers!! Please lift Miss Emma Grace up in prayer as she is still in ICU on the vent. We are missing her smiling face and ready for her complete recovery! Please visit her at www.caringbridge.org/ar/emmagrace. Also a new friend we have met, Cole Walker, an ATRT patient at St Jude’s is inpatient and having a very difficult time as he has had pneumonia and infections. Please visit his family and send your love and prayers at www.caringbridge.org/ms/colewalker.
HAVE A GREAT MEMORIAL DAY!!
Love to all,
Brandi
Sunday, May 29, 2005 2:00 PM CDT
Hello to all!
FIRST OF ALL I NEED TO START BY SAYING WE ARE HOPING TO GET BUSINESSES OR ORGANIZATIONS TO HELP SPONSOR DONORS TO COVER THE COST OF THE BONE MARROW DRIVE. HOWEVER, AT THIS POINT WE HAVE ONLY GOTTEN A GRANT WHICH WILL COVER THE COST UP TO $25.00 FOR THE FIRST 100 PEOPLE. THE COST OF MINORITIES IS ABSOLUTLY FREE ANYWAY-DUE TO NEED! I AM SO SORRY THAT I DID NOT EMAIL OR POST THE MOST ACCURATE INFORMATION BEFORE BUT WE ARE WORKING ON THIS COST ISSUE!
SO THE FIRST 100 DONORS IS A COST OF $25.00. PLEASE DO NOT LET COST INTERFERE WITH GETTING REGISTERED AS WE ARE HOPING TO GET MORE FUNDS BY NEXT WEEK! IT ONLY TAKES 15 MINUTES OF YOUR TIME AND YOU WILL BE REGISTERED UNTIL AGE 60!! PLEASE KNOW THAT MADELYN AND MANY OTHERS ARE IN NEED OF A TRANSPLANT AND THEY NEED THE BEST MATCH POSSIBLE FOR THEIR GREATER CHANCE OF SURVIVAL.
IF THERE IS ANY BUSINESS OR ORGANIZATION THAT WOULD LIKE TO HELP SPONSOR DONORS FOR THIS DRIVE AT A COST OF $65.00 EACH PLEASE EMAIL ME AS THIS IS A VERY IMPORTANT CAUSE TO OUR FAMILY AND THE MANY KIDS AND ADULTS WHO ARE FIGHTING FOR A BETTER CHANCE AT LIFE.
THANK YOU!!
Madelyn has been feeling really good this weekend. She tested positive Friday for C-Diff which is a fungal infection that is only contagious through the stool. She does have to be in isolation at the hospital. Such a bummer! They took her off of Cefixime and started a new antibiotic, Flagile which helps treat fungal infections like C-Diff better.
We did not have to be hooked up over the weekend with a bag of fluids but will start back on that Monday as well as starting the chemo and also another antibiotic that will be IV which is taking the place of Septra, an antibiotic that she has not been able to take in a few weeks due to the particular chemo she is on.
We had a BIG day Saturday. Mommy, daddy & Maddie went to the mall for a carosel ride and daddy and Maddie spent some time shopping for Nelli and Strawberry in Build-A- Bear! This store makes her so happy!!
We had some friends from Dyersburg come visit and take us to dinner last night! Thank you Miss Donna and Emilee for treating us and Madelyn to such a happy time!! We had Chinese at the Red Sun Buffet in Collierville and they have a balloon guy there every Friday and Saturday night so Madelyn enjoyed watching him make her a special flower hat and a love heart centerpiece for our table!!
During dinner I received a call from a special St Jude friend that they were headed to ER at Laboneur. Poor Brooklyn had fallen into a table and split her little nose and the poor little baby had to be strapped down like a burrito to get her needed stitches. (Not a happy camper!) We were there til 2AM, what a night! Please visit her at www.caringbridge.org/or/brooklyn.
Today Madelyn and daddy had a fishing trip planned with her Grandpa so they headed out for hopefully a very adventurous but safe day!!! She got on her fishing clothes and of course her newest pink, sparkly Princess flip flops, her fishing pole from Fishin’ Galore and her tackle box, sunglasses and sunscreen and she was rarin’ to go!!
Thank you for keeping Madelyn and all her St. Jude friends in your prayers!! Please lift Miss Emma Grace up in prayer as she is still in ICU on the vent. We are missing her smiling face and ready for her complete recovery! Please visit her at www.caringbridge.org/ar/emmagrace. Also a new friend we have met, Cole Walker, an ATRT patient at St Jude’s is inpatient and having a very difficult time as he has had pneumonia and infections. Please visit his family and send your love and prayers at www.caringbridge.org/ms/colewalker.
HAVE A GREAT MEMORIAL DAY!!
Love to all,
Brandi
Friday, May 27, 2005 2:08 PM CDT
Hey everyone! Yes, we are still here!!
UPDATE: 3:15PM
We just received a call from clinic. Madelyn had a stool culture from yesterday that has come back positive for C-DIFF. UGHHHH! We now have to be in ISOLATION when we are at the hospital.
We have received a grant for the BM drive which will cover the cost up to $25.00 for the first 100 donors. W need the help of business support to help with covering this for FREE. Sorry that I did not email or post the most accurate information. Thank you!
2:08 PM
Since our last update we’ve been to a special friends birthday party where we surprised her since she had not seen Madelyn or us since February! Happy 12th birthday Amber!! The kids both were invited to our buddy Joseph’s end of the year pool party at his home. So Madelyn enjoyed getting on her swim suit and sitting on the steps of the pool, splashing and kicking!!
I had the wonderful opportunity to speak on behalf of St Jude Wednesday for most of the medical staff. It was the ‘kick off’ to their Employee Giving campaign. Thanks Anna for inviting us to be a part of this special day! It has been such a nice pleasure to be able to help St Jude with telling our story and let donors know what St Jude means to us and what they have done for us! I want to encourage families here at St Jude to take the opportunity to tell your child’s story so that donors and other families know what it is like here at St Jude’s.
Everyone here has something unique about them and that’s your child’s story! The new donors of St Jude need inspiration and I am just sure that all it takes is one story, any one story and the rest is history! Because no matter how worse or better your prognosis is compared to another it is St Jude’s who took us in and said we’ll cover the cost of your treatment, oh, and not only that but we’ll give you a free place to stay while you undergo treatments, we’ll give you meal cards and snack bags everyday that you are here, we’ll pay for your groceries, we’ll give you transportation or reimburse your mileage to and from the hospital and we’ll even give you your medications absolutely FREE! All the while they are doing research around the clock! WOW! What a great thing St Jude’s does for all of us!! What a wonderful blessing to be part of this family! I feel we need to help in the efforts of raising money for St Jude’s so that others that have to walk in our shoes will be able to receive the same great benefits St Jude’s offers while they keep working on “Finding cures and Saving children!!” OK so I just hope to inspire one person to Give Back!!! Thanks to all the medical staff for listening to our story and for giving us HOPE which keeps us fighting!
SPEAKING OF GIVING WE ARE HAVING A BONE MARROW DRIVE IN HONOR OF MADELYN. IT WILL BE HELD SATURDAY, JUNE 4 FROM 10AM-3PM. IT WILL BE HELD AT CORDOVA TAEKWONDO LOCATED IN THE SHOPS OF WOLF LAKE AT 2965 N.GERMANTOWN PKWY, BARTLETT, TN.
It is being done through Heart of America and is normally $65.00 per person but for this day the fee will be waived through the donations of businesses or organization support which I will post at a later date. It only takes about 15 minutes. Refreshments and activities for kids will be provided. Please make plans to support this cause as Madelyn and many children await a donor match.
We have been doing chemo every evening in the medicine room this week. We will have the weekend off and then back again on Monday. She is on fluids after every chemo treatment this time so that she may not become dehydrated. Madelyn has been very crabby off and on for the past 3 days and has even complained of right leg pain. Not sure that it means anything, we are just watching this over the weekend. She has been having much burning pain when pooping as she may have a fissure or tear. We are just to apply creams as she will begin the diarrhea again real soon. On a good note, we had clinic today and her weight is up 2 lbs since last week!!! Yeah Madelyn!!!
Thank you to all our prayer warriors!
Love Brandi
Monday, May 23, 2005 3:28 PM CDT
Hi everyone!
Hope all was well over the weekend! We sure had alot going on and enjoying every minute of it!! Saturday we were invited to a progressive dinner. For those that have never been to one of these or never heard of this let me just say...It is all about FOOD, FRIENDS, FELLOWSHIP & FUN!! We gathered at one home (Thanks Julie Nelson & Family)for appitizers, then to another for the main meal (Thanks to the Luebbe family), and then it was off to another home for dessert (Thanks to Laura & Family)! It was so nice to be able to gather with the many wonderful friends that we have made in the past year and to meet even more this weekend! Your church family and friends are so dear to us and we are very blessed to be part of this circle of friends!
I have to tell you this as it was just so funny. At the last home they were doing door prizes and we all drew a number. Ours was #3 and #11. There were only about 10 gifts to 25 numbers. One of the gifts was wrapped in bright pink paper and well the whole time we were there Madelyn wanted to know what was in it. Of course I explained that in alittle bit they will call out #'s to win prizes. So as they called out the #'s on the packages much to our delight it was just hilarious that the # on that pink package was #3. What are the odds of that! Madelyn opened the gift and it was a little candle in a jar! She hugged it close to her and said, "I luv it, I needed dis for my new house!" How sweet is that! She is so grown up sometimes! Of course she just crashed in the car but when we got home she just had to light that candle!
Madelyn & dad spent the day Sunday with Granmonna & Pa in Huntingdon and I got to spend some mom & Tyler time!
We have been at the hospital all morning. We spent our time in D Clinic opening up "FAN MAIL" from 'Miss' Judy, her chemo angel and from the Hawkins family in Huntingdon! Thanks so much! Madelyn really enjoys activity books!! We have to go back as soon as they call us when chemo is ready.
Her weight is up, up, up!! From 11.2 to 12.0kg!! This time around they are going to hook her up every night with a bag of fluids due to it hitting her so hard last time. She is feeling really good (I would say great but I am cautious to use that word since I don't expect any cancer patient to feel great) However, she is just so happy and full of life!!! Go Madelyn!! Oh, she wants to be called puppy today!! She really does not like her name. For a heads up to everyone who meets her you'll just have to ask her what her name is for the day! She will love you for it!!
Many blessings!
Madelyn's mommy
Saturday, May 21, 2005 9:27 AM CDT
Hello to all!
During A/T visit on Friday Madelyn's weight is down again .4 kg from 11.6 to 11.2 kg. (Multiply this by 2.2 to get weight in pounds!) Madelyn still has much of the diarreah from the side effects of Irrenotecan. This was her 4th round of it and really has affected her harder this time around.
She wants to eat. She ask for food constantly. We even go to great lengths to get what she ask for! I know most of the parents here understand that! Like going out at 11-12 at night to get a Wendy's cheeseburger or coke which is the case here sometimes but then she eats a bite and spits it out. Poor thing, I know it's her taste buds that are messed up. She is drinking and that's good!
They are switching her Periactin (appitite stimulant)to a pill form that can be crushed instead of the liquid which she cannot keep down.
Her labs all looked great so they do not want to put her on TPN at this time. We are keeping a journal of her food intake over the weekend and will meet with the nutritionist and Dr Furman on Monday. Madelyn is scheduled to start chemo again on Monday but we'll know more on Monday's visit.
After clinic Madelyn getting a good 3 hour nap in we all went to see a ballgame down in SouthHaven, MS with some really special friends of our from the Memphis area who we have met during our journey. GO CONNOR!!!! It was so very special to see them handing out fliers there with our sweet Madelyn's story on them and helping us get the word out about getting on National Bone Marrow Registry. Thank you Chis, Keri and all the sweet little kids we met that were so excited to do this! What a blessing to be surrounded by so many that care for us! We love you guys! Madelyn made a couple of new friends, Kaylee and Kali there and one even wanted to give her big baby doll stroller to Madelyn! That was very sweet! Madelyn strolled her baby doll around just about the entire game!! After the game, we all went out to Bruster's for ice cream! What a treat! It was so much fun to see Madelyn laughing and playing with all them boys!
Hope everyone has a great weekend!
PLEASE GET REGISTERED ON THE NATIONAL BONE MARROW REGISTRY FOR MADELYN! All you have to do is contact your local blood donor center or call St Jude's number listed above to schedule an appt!!
God Bless,
Brandi
Thursday, May 19, 2005 10:39 AM CDT
Hi there everyone!
Well, I wasn't planning to journal today just because I was going to spend the day catching up on all our St Jude friends and a friend of ours battling breast cancer. Please visit her at www.caringbridge.org/tn/lisar.
So anyway, as I was reading our guestbbok entries I was just so touched and amazed at all our faithful prayer warriors who have wrote to us with heartfelt messages. Thank you so much for doing this. I cannot tell you how much this can lift a family up by knowing we are not going through all of this alone!
And thank you to those that are helping in our efforts to get the word out that Madelyn needs to find a bone marrow donor match. If you have any ideas or know of ways to help in this effort please contact me by email at the bottom of our page!
As much as I love St Jude, it has been so nice not to have to be at the hospital but twice this week! Madelyn is still continuing to have the diarreah and once a day vomiting but for the most part she is feeling good! She laughs and plays much of the day! Thank you Lord! Last night we stayed up late playing Princess Monopoly (her new favorite game!) She loves to dance every time the theme song to Friends comes on! (Her & Dad watch episodes everyday on DVD!)
As a St Jude family there are many opportunities in Memphis that allow us to get out and enjoy absolutely free! So yesterday we all went to see Graceland! Home to Elvis Presley for those that that may not know! I remember my parents and grandparents (my grandma Pierce is a HUGE Elvis fan!)going to this when I was young but I had never been! So after watching the special on T.V. Friday night I was inspired to go as well as Madelyn & Tyler also! She was so excited to go to see this! It was very stuffy in the house so she tired easily! It was truly a 70's style home but well worth seeing! And the Lisa Marie plane was more grand than I ever imagined! Who needs that much space or has that many friends to need a plane that BIG, I wondered? LOL No one but Elvis I guess! Who knew he was that BIG!LOL
Ok while journaling I had to stop, as Madelyn needed to be changed. So we got a bath, changed our dressing and got meds too! Whew...so now back to what's going on!
Neal & Tyler are out seeing the opening day of Star Wars so we'll get to hear all about that today and many days to come!!LOL Tyler is such a HUGE fan. He literally talks about it non-stop!!
Well I really just wanted to say Thank you to everyone for your support, your love, and your prayers throughout our journey! We love you and love to hear from you!
We have a special & urgent prayer request for our neuroblastoma friend Miss Emma Grace. Please visit her website at www.caringbridge.org/ar/emmagrace to read on her condition and lift her and her family up in prayer! She has been through so much and come so far.
PLEASE REMEMBER TO GET REGISTERED ON THE NATIONAL BONE MARROW DONOR LIST IN HONOR OF MADELYN!
Love,
Madelyn's mommy
For those who would like to have our new address please feel free to email me and I will be glad send it to you!
Tuesday, May 17, 2005 11:39 AM CDT
NEW PHOTOS ADDED ABOVE AND IN PHOTO ALBUM!!!
Hello to everyone!
Madelyn had a visit with Dr Furman on Monday. Her labs a fine! Her weight is down .2 kilos. So they have put her on Periactin (sp?), an appetite stimulant. She has been on this once before and it seemed to have helped so we’ll see if this will get some meat on her little bones!!
They want to stop the Acylcovir, apparently her T-cell are growing to where she is more able to fight off those viral infections a little better! That’s great news! We want improvements!! Thank you Jesus!! Way to go Madelyn!!
We spent the rest of the day with Miss Brooklyn and her mommy visiting our old home place in Dyersburg! We took Miss Brooklyn to Madelyn’s favorite girly spots in town. Anna Marie’s, The Jewelry Jungle, and good ole Wal-Mart!
We stopped at our old home and visited with our wonderful neighbors, Patty, Mr. Steve, Morgan and Zack!! It was so nice to see all of you again!! We miss you guys!!
It was so nice to have a girls day outing!!
Our next clinic visit is Friday. We are scheduled to start chemo on Sunday.
Thank you to all that have become registered bone marrow donors. Please continue to pray for Madelyn and her St Jude friends!
Love to all,
Brandi
Saturday, May 14, 2005 11:22 PM CDT
NEW PHOTOS ADDED ABOVE!!!!
Hello to all!
Hope everyone is having a wonderful weekend! Madelyn is feeling so much better!!!! Nurse Sandy was amazed at the difference from Thursday’s visit to our visit on Friday! What a difference alittle Glucose makes!! She was laughing and playing the entire day and wanting to read, read, read!!! She absolutely loves being read to!!! However, her uric acids were still up just a wee bit so they kept her on fluids for another day.
We got tot see Grandma Sherry, Leon, Uncle Chawn & Aunt Lissa last night and see our little Miss Abby Lynn too! It was so good to see all of you!!
Today Daddy, Madelyn and I went to the hospital for lab check. We had a picnic in the Danny Thomas Memorial Garden. It is a very peaceful setting with two waterfalls, lots of shade trees and beautiful flowers. Madelyn felt so wonderful today and was so excited when tossing daddy’s pocket change into the wishing fountains!! Back at the hospital her labs showed her levels were perfect so she does not have to carry around a bag of fluids any more!! Yeah!!
Madelyn got a visit from our little friend Brooklyn today. She is back from Oregon until Sept and is now staying at the same apt complex right behind us!! It is so nice to have her so close! Please visit them at www.caringbridge.org/or/brooklyn. We have planned a play date to the zoo tomorrow afternoon!
We visited with Aunt Vickie tonight and then went to dinner and a movie! Madelyn has been so happy and so funny!! I know that daddy feels the same when I say that her fun loving nature and “tell it like it is” attitude is just a pure priceless joy!!
Keep those prayers going up for sweet Madelyn and PLEASE get the word out to get registered on the National Bone Marrow Registry ASAP!! I may say this often and please don’t feel guilty if you can’t or feel like you have to tell us. We understand that there are many reasons that people cannot give and that is perfectly ok but if you can PLEASE do so for the life of a child!! Thank you so much for taking time to do this for us and the many children who are in need of a perfect match!
We love all of our faithful prayer warriors!!!
Enjoying happy times together always!
Brandi
Friday, May 13, 2005 2:28 AM CDT
God what are you trying to tell us? That you are in control or what? That’s just what I needed to see today! If I have learned anything from this experience is that our will is not always His will!
Madelyn was a very sick little girl this morning. She woke about 8:30 AM very nauseous and dry heaving so daddy got her Ondansitron ie Zofran tablet. About 45 minutes later she was still tossing & turning and very nauseous so daddy gets her some Benadryl (this helps calm the tummy!) She just wanted mommy to rock her so we did this until she fell back to sleep. She ended up getting sick soon after and slept until 12:30 pm. We had to be at St Jude at 2 pm for lab check and clinic visit. She slept all the way there and during the clinic visit. Her weight is down from 12.1 kg (26.6 lbs) on Monday to 11.7kg (25.7 lbs) today. This seems so strange as she weighed 32 lbs when diagnosed over one year ago.
Her Glucose was down just a bit and some of her other levels were up all indicating she is showing signs of dehydration. So after her LAST DAY of chemo today they hooked her up to a bag a fluids overnight and will check her labs again in the morning.
We talked with Dr Furman today and the news we have been given today was not what we had hoped for. The Bone Marrow Transplant Team had a meeting on Wednesday to discuss Madelyn’s case and the two donors we had hoped would be a match are in his words, “A BUST”. He did not know why at this point but our Fellow is checking on the reasons why as we are just curious. However, the fact is that there is now NO ONE (at this time) that matches Madelyn. My heart aches and I am saddened that I can’t get my baby girl better. I have been in total frustration. Why is she not in Remission anyway, I ask? I realize that all children with Neuroblastoma respond differently to different chemos but…WHY? Why is this so hard to understand? What an emotional rollercoaster we are on.
On a positive note, since Madelyn had more tumor in her marrow after the first stem cell transplant back in Sept he thinks that it is due to the harvested stem cells not being as clean as they had needed to be. He does not think that it’s the cancer outsmarting the chemo since what we are doing is keeping her at least stable.
As I mentioned in my last journal, the chain for transplant is sibling match, outside donor match and then a parent. This kind of ‘parent transplant’ is called a Hapbidential or (HABLO) for short. From what I understand, St. Jude’s does not have as much research in the side effects of this type of transplant such as the Graft vs. Host Disease. With us only being a 3 out of 6 match for her they are only willing to do this if we insisted. They do not have any evidence that it will cure or even work. They DO know that it will make her really, really sick and is potentially fatal. With this kind of transplant they know she will have to be inpatient for AT LEAST 100 days and that is if she does well enough. The possibility of her spending her last days in ICU is great.
I have been praying about this transplant ordeal faithfully for the past few weeks and I never could get a good feeling from it. Dr. Furman feels that quality of life is crucial. So do I. These words are very hard to hear but easy to accept. We have always tried to do things as a family even if it’s just playing games, going for a walk, or singing in the car. We have been talking about going on more mini trips with the nice weather here and Madelyn doing fairly well. I read an article the other day and to sum up ‘another lesson I’ve learned’…kids won’t remember when times were tough and how much money your family didn’t have but they will remember the picnic in the park, riding the horses every time they go to Wal-Mart (one day they’ll be too embarrassed to ride or too BIG!), how you let them get that pet they always wanted when someone was giving it away, or when you let them stay up late and watched their favorite movie with them and how you tuck them into bed each night with a story, a butterfly kiss and a prayer. Hug your kids tight and often!! I know we do!!
Dr Furman talked of how amazed he is to see how well Madelyn has been doing the past few months and how full of energy she is after almost losing her in November. That’s God, I say! Never give up HOPE!! Yeah sure, this is said a thousand times but dear Madelyn is living proof of keeping the HOPE & FAITH!! Our Lord has it all worked out!! He knows what she needs and provides. We have to accept His will and be strong in the faith. We are looking to Him constantly for a complete healing as He is the ultimate physician! Please pray for Madelyn, a complete healing.
I throw a lot of questions at poor ole Dr Furman at times and he just answers the question and then says, “I know that’s not what you want to hear”. Right, because I really want you to tell me my baby girl is going to be CURED and that I’ll hold on to her forever! But today Dr Furman said something that I did want to hear…He leaned back against the sink with his arms folded and a pair of stethoscopes in his hands. He said all that he needed to say regarding Madelyn’s treatment and ended by saying, “We’re not there yet, and WE’RE NOT GIVING UP!” This is why I say, we’re in the best hospital and the best human care…This I needed to hear. Thank you, God for your blessing today. Thank you for the strength of the physicians to deliver us news, good or bad. For the knowledge of our doctors to make good sound decisions in Madelyn’s treatment and the peace that comes from our decisions regarding Madelyn’s treatment and care.
OK so this is the plan for now (as we all have learned by now this changes as many times as Madelyn changes paci’s)! After she recovers from this round of chemo that we have just finished we are going to do one more round of Irrinotecan & Temozolomide. We will do all of her scans again. If she continues to stay stable we will start her on a combination chemo I.C.E. We will do scans again as she recovers from this and see where we stand and our next step.
This is all the information my brain can absorb or tell at this time so I will end tonight by simply saying Thank you to God for His many blessings and to our faithful prayer warriors, please continue to strengthen us as it is through all of you who carry us through each day.
Thank you Donna & Tabitha for your visit last night. I know Madelyn loved seeing both of you, wish she had felt better! Of course she was able to play a game of CandyLand!
I understand that there are many places (thanks to the Canadian prayer warriors!) that do Bone Marrow Registry for FREE! And maybe there’s one near your hometown too! PLEASE, take the time to make an appointment either at St Jude’s (website listed above) or your nearest center and PLEASE get registered for time is very crucial for many of our kids including Madelyn. After the ICE, they will recheck the Registry and see if there is a better or even perfect match for Madelyn!
Trusting God’s Will,
Brandi
Monday, May 9, 2005 11:30 PM CDT
Hello to all!
Well, we are back from the Ragun’ Cagun state of Louisana! Everyone there is so friendly! I am so thankful that Madelyn was able to attend because we had such a great time! It started off alittle rocky as about half way there Madelyn got sick in the car and then had to stop several times from being uncomfortable. After getting to the hotel there in Baton Rouge she perked up and got very excited when we got out her swim suit! She did not get to actually swim but she got to sit on the first step of the pool and get her tail wet!! Daddy gave her a few twirls with her feet splashing Tyler in the water and boy I wish you could have seen the smiles and giggles!!! I filmed it so I can’t wait to someday sit with her and look back to those days that we treasure so…
We had a chance to see some St Jude buddies as well as meet some new St Jude friends at the hotel and at the farm! Some really special people to us, Travis & Chastity Schexnayder came to the hotel to visit with us Friday night! I know this was very hard for them to do as they had just taken sweet Zoie to this event last year. Thank you Travis and Chastity for doing this as hard as it was for you! It really meant so much to us to visit with both of you! Thank you for sharing with us even more of Zoie’s precious life and legacy! It really feels great to hear you talk about her! I feel a special peace & comfort the more I learn about Princess Zoie!! Please visit our friend, Zoie at www.caringbridge.org/la/zoie.
The charter bus ride to the farm was police escorted with no stopping at red lights!!
We sat with Miss Macy Morgan (ALL patient) and her family on the bus ride and had a chance to catch up on her journey! She told me she wouldn’t trade a thing for what she has been through because if she had not had cancer she wouldn’t have had the opportunities to do all that she has done! WOW! What an inspiring thing to say from such a brave little girl! Madelyn really loved playing with Sophie and their cousin Tyler! Madelyn sat in the middle of them and they all just tickled each other and giggled through the entire ride!
We’ll I’d like to say we caught a “BIG ONE” but we did not even get a bite nor a nibble! LOL We had better luck winning prizes at the game booths! Madelyn got her face painted like a cat and her hands with a lady bug and a bunny! Daddy and Madelyn hammered a shelf together, Tyler did some rock climbing and they both made some colored sand bottles and had there heads spray painted green!
We tried not to do too much petting in the petting zoo. One, due to Madelyn’s low immune system and Two because our kids get attached to animals and well let’s just say we now have a cute little white rabbit! Tyler has always wanted a puppy in the house but required much maintenance for our busy lifestyle so seeing his compassion for this rabbit we gave in! He has named him Twitch! We went back to get Madelyn one and they were all gone! She just loves it. I have to tell you this story and I will get to today’s Bone Marrow visit I promise! On the way home Sunday, Madelyn was holding Twitch in the back seat and got out her baby wipes and began to bathe the rabbit but she said, “He won’t keep his head on this pillow so I can wash hims belly!” LOL Then she wanted him to go to sleep so she kept pushing his eyes down to go to sleep! LOL That poor ole’ rabbit! So of course he is like part of the family now! Tyler could not wait to get a cage and book to learn how to take care of him!!
Maddie and dad have just read several stories and they are putting a puzzle together as I type! She is feeling terrific, holding her teddy while looking for pieces!!
Now what we’ve all been waiting to know!! BMT Clinic visit today. Neal & I talked to Dr Kasow today. We now have a better understanding of the type of transplant they want to do with Madelyn and so I will try and explain this the best way I can and I’ll try not to confuse you!!
The transplant they want to use on Madelyn is called a non-related allogenic transplant. There are 2 types of transplants Autologus which is using the patients own stem-cells which we did in September of 04. Second, there is an Allogenic transplant which is using the bone marrow of one of 3 people: a sibling, a matched donor from the National Bone Marrow Registry or from a parent. They use HLA typing to find markers in bone marrow: You get 3 markers from each parent an A, B, and DR.
EXAMPLE: (THIS HELPED ME!)
HLA (EXAMPLE)
(Mom) (DAD)
A 02 08 A 03 01
B 04 10 B 05 09
DR 06 12 DR 07 11
MADELYN'S MARKERS
A 02( ) 03( )
B 04( ) 05( )
DR 06( ) 07( )
These 6 numbers above are called the antigens. Now you can see that she got 3 from mom and 3 from dad. Meaning, we are only a 3 out of 6 match. They have now found that Madelyn has TWO 6 out of 6 matches with these antigens!! However, there is a second set of numbers (see ( ) in parentheses) called allele numbers. Allele numbers make the antigen numbers more specific. They have found that these two donors from the Nat. BM Registry are only a 5 out of 6 match on the allele numbers. So in short this means we will hopefully know more by Friday as to the specifics of the compatibility of these two donors. They are already in the process of contacting these donors BUT there is always a chance that for whatever reason these donors back out, may be pregnant, etc. It is not unheard of and from talking to other parents and doctors we have to continue to get the word out to please get registered on the national BM Registry! It takes sometimes 30 days to get your typing on the list so please do this ASAP for Madelyn and for the many others that are in need of a bone marrow transplant!
We feel like we have a better understanding of how this is marker stuff is working for Madelyn but we are not there yet. We are doing our last week of chemo in the med room everyday this week. We will have two weeks off then we will do one more round of chemo (which takes 2 weeks) then we will do scans again before we go to transplant. So just guessing that would be about 7 weeks or Beginning to Mid July. This is not a final decision. We will be using our time to pray about the decisions we are facing and God’s Will.
Thank you Dear Lord for the gift of our children. Thank you for the understanding given to us today so that we may make an informed decision. Please continue to be with us as we keep stepping through our journey.
Please pray for Madelyn that she will continue to have strength and quality of life. Please pray for strength, understanding and peace as Neal & I struggle with life’s most challenging decisions. In the beginning our journey was very cut & dry with a protocol in hand and now as we are in experimental treatments we are walking in gray areas where we are having to make very difficult decisions.
Thank you to everyone who has signed the guestbook! You're words of encouragement mean so much to us! We look forward to hearing from all of you! Please keep Madelyn's friends here at St Jude in your prayers as well! We love all of you!!
Final note: Thank you to The Dream Day Foundation for raising $250,000 on Saturday for St Jude's!! As parents of a St Jude child we thank you from the bottom of our hearts for your big hearts and helping fund the research to a CURE!!! It is truly amazing to see this work in action!
Praying & Believing,
Brandi
Wednesday, May 4, 2005 7:46 PM CDT
Hello everyone!!
Yesterday was very busy for Madelyn & I! First we had the opportunity to go to a very special Wish Grant of a very special friend of ours! His name is Jake Roberts and he was diagnosed with stage 4 Neuroblastoma just three months before Madelyn. We first met Jake and his mom when Madelyn started her very first round of chemo inpatient in February of 2004. He was the first patient with this cancer that we met here at St Jude and have become very close to their family which lives here in Memphis.
It was so exciting to see all the joy & excitement in his eyes yesterday. He looked so great! I really think better than I have ever seen him look! I just have to tell you about his Wish Grant to Disney World! His wish grant was held at St Georges School in Collierville, TN.
His day started with a ride on the fire truck. He played a game outside with Shrek, in the gym he raced a man on a unicycle with his new Spiderman scooter to win prizes, he played in a Spiderman ball-pit with the real Spiderman and then in the little theatre we watched a show called St Georges Idols (like our fav show American Idol!)which was Jake’s favorite characters singing and dancing! There was Shrek, Cookie Monster, Spiderman, and The Wiggles just to name a few! Jake got to announce his favorite…Spiderman!! Mickey Mouse came out to grant Jake’s wish to Disney!!! He was sang Happy Birthday to as he will be turning 4 on Friday May 6th!!
The event brought back many memories of our wish grant and our trip to Disney as the spokesperson from Make A Wish said, When you wake up on Monday morning please remember Jake and his family as they will be flying to Disney World and their lives will be forever changed thanks to all the supporters who granted his wish!!! I could not help from being emotional as she spoke and know all too well how much this trip means to them! For one week, it was so nice to have a ‘normal’ week outside of the hospital! Please pray for safe travels as Jake and his family travel to sunny Florida! Pray that Jake feels well enough to enjoy a fun-filled week that he will never forget! Way to go Jake! We are so proud of you and we love you!! Can’t wait to hear of all your adventures and compare stories!!
On to Madelyn, she is feeling very well!! We have been keeping busy. By the time we get up and get to the hospital, do crafts for an hour past our chemo, stop at Wendy’s and get a kids meal cheeseburger PLAIN with a coke IN A COFFEE CUP and then get to our apt it takes up most of the day! Our apt is about 40 minutes with traffic from the hospital so it seems like forever compared to the 10 minutes to the Target House or the 2 minutes to the Grizzlies House! I guess I’m just in need of rest!! Madelyn and I did get a good nap in this evening!! Some much needed rest in deed!! We picked up Tyler last night so he is back with us!! Madelyn is a very happy girl now!! She misses him so much when he is away!! We stayed up playing one of his new games SceneIt Jr he is just opening from Christmas and we had a ball!! There are actually some Disney questions that Madelyn could answer which makes it a great game for all of us!! But tonight Madelyn and daddy & I played Pretty, Pretty Princess and you should have seen daddy with those earrings and jewelry on!! LOL (laughing out loud!)
I did get some results back…Madelyn’s HMA’s are 21.4 from 21.2 and her VMA’s were down just alittle. This is a urine test that detects a certain tumor marker for Neuroblastoma activity. So from all test back now it looks like the cancer is STABLE but still Active. We have our 5th day of chemo tomorrow and Friday we are off to Fishin in LA!
Please continue to keep Miss Madelyn in your prayers along with her St Jude friends and those that are battling cancer. We are so blessed to have the much needed support from all of you!! You’re prayers and constant love is much needed and much appreciated!!
Counting our blessings,
Love to all
Brandi
PS Last night Madelyn and I made a list together of some of her favorite things and at the top of her page, this is what she said!!
Monday, May 2, 2005 9:45 AM CDT
UPDATE 2:40 PM
We are OUT OF ISOLATION!!! YEAH!! Madelyns culture is now negative for the flu!! Thank you Lord!! Now we can get back to socializing once again!!
Monday, May 2 9:45 AM
We are officially in our new apt now! How did we ever fit so much stuff into that tiny apt at the Target House! Madelyn and Tyler love having more room to play! Madelyn & I were at the apt and couldn't wait til daddy got home to show him around! She showed him every room (as if he had not seen it!) with excitement and he kept saying WOW!! I am so thankful she is HAPPY!! Our home may be small but our love is so very BIG!!
Madelyn has been feeling or at least playing and acting very well! She spent some time with Grand-monna & Pa, neal's parents yesterday while Neal & I were able to get the last bit out of the Target House.
She started her chemo Sunday morning and after one day we are seeing the beginning of the diarreah which is a major side effect of Irrinotecan. Immodium does the trick though! We will do this everyday for one hour in the Medicine room until Thursday. We will have Friday and Saturday off.
We are hoping for the results of Thursday's culture to come back negative today so that we can return to the normal part of the hospital again. It is hard to be social in isolation!!
Our appt with the bone marrow transplant team is on Monday the 9th. We will be asking lots of questions regarding Madelyn's next step in treatment.
Please pray for Madelyn and her St Jude friends as they continue their fight for LIFE! We look forward to hearing from all of you in the guestbook!
Love to all,
Brandi
Friday, April 29, 2005 10:19 PM CDT
Hi there!
Not much going on here today. Just staying in trying to get our baby girl over this flu!
Mom aka Grandma Sherry came in last night and Madelyn cryied for her and Tyler to stay and spend the night with us at the Grizzlies house instead of her going to her sister's house who lives here in Memphis. So who could resist that! We stayed up late, ate Wendy's cheeseburgers, played with her Cinderella castle and watched Cat in the Hat til past midnight!! Mom and Tyler spent the day getting the Target House packed and some moving to the new apt. Thank you mom for coming and helping us get this done! You have been such a BIG help to us! We love you!
Neal really liked the Dr he went to today. He will be receiving several treatments over the next seven days in hopes of getting his back better! Please pray that they are able to relieve the pain he struggles with daily so that he is able to pick up his sweet baby girl without hurting!
Madelyn and him are playing 'I Spy' as I am typing! She loves this game! She is feeling so much better! She is still coughing some today but maybe that just means she is getting that stuff up!
She is getting so tired as we all are so I will cut this short tonight!
Love to all,
Brandi
Thursday, April 28, 2005 4:37 PM CDT
Hello everyone!
Well we woke to a very rainy day here in Memphis, TN! Speaking of rainy days, I was trying to put a special weather map on our page and somehow did not get the whole html code on there so there is an error reading at the top of the journal for the time being! It is not your computer! LOL
We headed to the hospital this morning and suited up as chickens in order to walk through the halls to D Clinic!
Our cultures from Monday have come back and they were POSITIVE. Ughhh! So, we are still in ISOLATION. They did another culture today which is a swab in both nostrils of her little nose and hopefully will have better results in a few days!!
Now to the MIBG, there is a spot on Madelyn's liver that lit up this time. Dr Furman is unsure if it is tumor or some kind of deposit. The liver is a very 'blood vesseled' organ and everything is processed through the liver so he just wants to keep an eye on it for now. Yes, this is very discouraging but we need to pray this is not tumor. The primary tumor in the abdomen lit up as well meaning there is still activity.
Dr Furman thought we should start chemo no later than Monday. We are going to start chemo on Sunday for sure. We chose this day because the chemo is 5 days on two days off then 5 days on. Which means Sunday through Thursday with Friday and Saturday off! There is a trip to Baton Rouge, Louisana coming up on May 7. It is called Fishing Galore which is an event for critically ill children and their families on a farm in Clinton, LA! The hotel and the event day are completely FREE. The kids get a fishing pole, there very own tackle box and many great prizes! We are driving but I am not sure if their is a bus from St Judes or not. I do know that the bus takes you from the hotel to the farm "In Style" with police escorts and the whole nine yards! I have heard they do a wonderful job with the kids and should be lots of fun!!! We received our sign up sheet from the medicine room and Madelyn received her confirmation # and tie dyed T-shirt in the mail with-in a couple of days!! We are very excited as we have met folks who are going as well! It's like going to a family reunion! He thinks Madelyn should be fine to go on this trip as it is at the end of her first week of chemo and her counts should not be affected at that point! This chemo has been great to not affect them much at all!
Neal went to visit his grandmother in the hopital tonight. She had three blockages and when they went in they were able to remove two of them but had to stop before fixing the third. I will have more details when he returns. Tyler has made a friend here at St Judes, who he is playing with in the game room and Madelyn is getting her beauty sleep!
Please pray that she recovers soon from the flu that she is having and that she will be able to enjoy the trip! Pray that the chemo does its job to kill the neuroblastoma cells. Pray that the chemo is effective on the spots on her liver. Pray for the knowledge of Dr Furman, Dr Kasow and the entire bone marrow transplant team to determine the most effective decision regarding Madelyn's treatment. Pray for a complete healing for Madelyn. Pray for strength and understanding for Neal, Tyler and I.
We have many questions for the transplant team and hope to get an appt very soon. I want to thank the many people who have signed our guestbook with your words of encouragement. Thank you for getting the word out to many people you know and thank you for taking the time to GIVE of yourself for the life of a child!! Right now my heart is into getting the word out regarding giving blood, platelets and getting on the National Bone Marrow registry. I have an appt next week myself. I cannot stress enough how this journey we are on has taken our family on many rides in many directions. Madelyn has had at last count over 25 platelet transfusions and even more blood transfusions! This is just one child at one hospital in one city...
Today I was told that our chances of getting a 6 out of 6 match for Madelyn in the next few months was like the odds of winning the lottery...Yes, there are millions of people on the National and even International Bone Marrow registry but I personally KNOW of kids who have found a 6 out of 6 match on this list! I am sure that it was already there for them and for Madelyn it is not...YET!! NEVER...EVER give up HOPE that it can't be done!! I know that I am not going to! I realize that no one want's to give us false hope here at St Jude's, that's the great thing about St Jude's, they are protectors of their families!! They mean well and for this I love the St Jude staff!
I have been in the position of losing HOPE and in knowing God and through prayer, he has shown me and many others just what He can do!
I have much on my mind and many more thoughts to come but I am going to end tonight just by saying that I am so happy to hear from everyone in the guestbook! I have been so touched and humbled by all the entries. Please know that when I count my blessings, I count all of you!!
Counting my blessings,
Brandi
Tuesday, April 26, 2005 9:38 AM CDT
Sorry about not getting to journal last night as I wanted.
Our day was much longer than expected and a very emotional one at that. Madelyn had her MRI done and did well. We did try and eat some lunch but Madelyn just didn't feel like it much after sedation.
We waited in D Clinic for almost 2 hours to see Dr Furman, it was ok though, we got some coloring in and much story time!! We also got to visit and play with Alex Molnar, a patient friend here. We also met a new friend, Brooke from Louisiana who will be going to the Fishing Galore also on May 7!!! And we got to visit also with little Miss Brooklyn as she is in for one day! As soon as Madelyn saw Miss Danielle she hopped right up in her lap and wanted to be read to! What was wrong with my reading?HEHE That's ok I got to get my hands on Brooklyn!!!
Needless to say, when we got into D Clinic they had gotten one of her cultures back from the labs drawn over the weekend and Madelyn has Para-influenza TypeB. Which is a contagious viral flu. So, we are in ISOLATION! We have never had to be in ISOLATION before! We still have our room at Target House but now have our own ISOLATION room at the Grizzlies House too! I was smiling and saying It's OK to our nurse, Sandy as she was telling me this like she was sad for us!! I know WHY now!!
As many of you know, Neal has been laid on his back resting due to several bulging disk for over a week now. He had lumbar disk surgery 2 years ago and is now feeling some of that same pain again. We had just went to a new Dr on Friday to see about VACS D, a treatment option for him the day Madelyn started not feeling so well. We called a chiropractor friend of ours for an opinion and help as it was going to be a very costly treatment that insurance does not pay for and we are going to see him soon! So anyway, where I was going with this is that now Neal had to get our things together and bring them to us so he made Tyler a list of everything to pack and bless their hearts were able to get it over here to us!!
We have to enter the hospital through the side ISOLATION entrance only and have to gown & mask up and all our clinic and lab visits are done in a lonely back room! We are to have no contact with any of the families until we get a negative culture which they will do again on Thursday.
Then later, when we got to the Grizzlies House Madelyn wanted a honey bun and all Neal brought was a spoon for cereal and so Madelyn vented that she could not eat her honeybun without a fork!!
Back to yesterday at our clinic visit. Not only do we have the flu but she needed blood also! When you have to get or even if they think you may have to get blood, you have to have extra blood drawn to get what's called a blood bracelet which is good for 72 hours. They use this extra blood to get your match which takes about two hours to get the blood ready! So with us being in ISOLATION they took us to our waiting area an ISOLATION ROOM in the Medicine Room! Madelyn and Miss Nicole had to put on these light yellow paper gowns and yellow mask which Madelyn said looked like 'chickens'!! So her and Miss Nicole bocked like chicken's as I got their picture!! LOL Thank you Nicole for all you do for us! We love you!!
During D clinic visit we did get to see Dr Furman. The MRI and scans thus far say STABLE.
He told us the results of the match that Neal & I did a few weeks ago. We were only a 3 out of 6 match. The type of transplant the team needs to do on Madelyn to be at utmost effectiveness needs to have a 6 out of 6 match. Through the Bone Marrow registry they found ONE 5 out of 6 match. They MAY be able to use this but there are some things to consider: First, they only found ONE close match which could be trouble if this person decides to back out (which he said DOES happen)after knowing the multiple times of getting more blood drawn and having to work around that persons schedule for example work etc. Second, there is a greater chance of having more complications of Graft versus Host Disease. Last, we know there is no cure for this disease. There is the possibility of failure and fatality. BUT, with GOD'S WILL there is always HOPE!! So please before I go any further, pray for this when you pray for our Madelyn! Studies are underway and resarchers are in the process of trying to solve this GVHD problem without an exact match but when ask if they are close? They are not.
PLEASE, I am begging anyone that has been inspired by Madelyn's story or any of these children to please find the time right now to get on the National Bone Marrow Donor List and please do this for the life of a child. These children have mommies and daddies, brothers and sisters, grandparents, aunts, uncles, cousins and friends that they love dearly. They have dreams and wishes to grow up and get married and have children of their own. To be dancers and ballerinas. They want to be BIG. They want their life back. And we as parents, want this back too. We want a cure. We want our wishes granted. We want our worst fears to be distant memories. We want our precious baby girl to be better! I know our dear Lord has it all planned out. He only wants the best for His children. We want His will to be done for Madelyn but I feel it is a conscious effort as human beings to do something. All people need support in some way or another and ours is to get our daughter well. Please lift her up in prayer. Hug your children tight and know that children are truly a GIFT! We thank you from the bottom of our hearts for your love and prayers.
I sensed yesterday talking to Dr Furman that we face many difficult decisions in our future. I know that we will only face them head on with God in hand. He gives us our strength like yesterday as I could only think and talk to HIM as Dr Furman was talking to me. I don't even know if I heard everything Dr Furman said to me today. I wish Neal could have been there and I know he does too! Dr Furman is going to set us up an appt for both of us to meet with the transplant team in the next couple of weeks to discuss options and concerns.
I have contacted St Jude Public Relations and the following is what you can do to help!
First of all if you live outside of a St Jude affiliate you can contact the National Marrow Donor Program at 1-800-366-6710. They will get you in touch with your local facility where you can be put on the National list. These facilities charge anywhere from $25-$125. This is because this is a very sensitive test which tests tissue types. I know to many this may seem costly but if you ever have to face this horrible situation with your child you would HOPE there is a perfect donor match for your child!!
Now, at St Jude's if you give just ONE unit of platelets then this test is FREE!! This is because when St Jude has to get these platelets from an outside source it costs them much more than that! So to do this just call St Judes at 1-866-2STJUDE and they will connect you to the blood donor dept for an appt! Please do this in Honor of our Miss Madelyn!
They will check the National registry again as the time nears for Madelyn's transplant to check for a better match! We pray it is one of you!!
It has been nearly two months since our last chemo so this does not mean it is not working, it is holding her! He did say this eventually will stop working and that there were more chemos to try if we needed to. For now, Madelyn will not start chemo as planned until she gets a negative culture return or at least Thursday. That was one of those things I did not fully hear! She started on an antibiotic, Augmentin and will take this twice a day for 10 days along with other meds she is on.
WE have an MIBG injection today at 1PM and her scan will be tomorrow with sedation. For those who have ask, What does that stand for!!!Meta-iodobenzylguanidine! That's why we use initials!!LOL Basically, it is a nuclear injection into Madelyn's line which makes the neuroblastoma cells in her body light up! We do NOT want any lights on!!!
I have to go for now. I will update as I know more!
Please continue to lift Madelyn and ALL her St Jude friends up in prayer!!
Praying...
Love to all,
Madelyn's mommy
Monday, April 25, 2005 8:46 AM CDT
Hi there! Just a quick note to say Madelyn has stayed fever free since late Friday night! She had cold symptoms all day yesterday but still had the energy to play!!! We bundled up, imagine that in late April, but it is chilly here!! Anyway, we went out to play for just a bit! She slept very well last night!! I am hoping that she will be able to be sedated today!!
Madelyn has her MRI at 9:15 this morning and Brain MRI at 10:30 which are actually done together. Well I need to run and will update more soon! Please pray for our Miss Madelyn and all her St Jude friends!!
Love to all
Madelyn's mommy
Friday, April 22, 2005 2:01 PM CDT
UPDATE SUNDAY 11:00 AM
Just wanted to say Madelyn has felt so much better!! But I think she is getting a cold! She is sneezing & coughing some this morning.
She had a visit from Gran-monna & Pa(neal's parents)yesterday and they read stories and drew pictures!
Tyler and I had some Mommy/Son time!! We got some Chinese for lunch and went to see a movie! Then while getting a few groceries at Kroger he picked him out a couple of Star Wars III toys (He is a huge Star Wars fanatic!)I miss this time with just him & I and I know he does too sometimes!! It was very nice to be able to have this day together!!! He has been doing so well emotionally, now that he is here with us!! He and Madelyn have their days when she wants to play with his toys while he is playing with them but for the most part they are so sweet together!!! He's a big help with her and around the apt! I love you so much Tyler!!
I will update later more on our schedule for the upcoming days!!
Thank you for checking in on us over the weekend!!
Love to all!
Brandi
UPDATE 6:40 PM
Madelyn has a temperature of 104. We are headed to the hospital. Her ANC is 3000 so they will draw labs and most likely send us back to Target House. We will update when we return.
Brandi
UPDATE 9:40 PM
We are back from the hospital and boy is it windy out there tonight! When we arrived her temp was still 40.3 or 104. They did all the usual labs on her and give her some Tylenol along with an IV antibiotic. Our baby girl has not felt well at all today. They want to see her again tomorrow just to follow up and by late afternoon or Sunday they should have the cultures back.
She ask for a PB & J sandwich and coke and ate a few bites which is all that she has eat all day!
She is now lying on her Dora fold out couch snuggled in a fleece blanket watching Disney channel! Her fever has now broke and I believe she is feeling alittle better! Thank you for checking in on us! Boy, how things can change quickly! Please pray for her night to be fever free!
Love,
Brandi
Friday 2:01 PM
We are back from the hospital and I just wanted to update everyone on Miss Madelyn. Her hemoglobin was alittle low at 8.2 which may explain why she has been unusually tired and whiney today and wanted to be cuddled often!
The Bone Marrow tests were back and found Madelyn has less than 5 percent tumor on one side and less than 2 percent the other. We know that Neuroblastoma forms in clumps which was not found on the last test but could have been there. So what I am saying is in Dr Hartfords opinion, is that it appears to be STABLE. She stated that transplant is still in the forcast even with a small amount in the marrow.
The CT scan of Madelyn's primary tumor is larger than that of the scan taken before radiation. UGHHHH. OK now wait a minute, Dr. Furman agrees that this could be some swelling, bleeding, etc. caused from the radiation. However, the tumor is still there which is very discouraging.
We will be starting our fourth round of chemo on Monday. It is a combination of Temozolomide & Irrinotecan. We will be having her HMA & VMA results next week. This is a urine test which shows a certain tumor marker to see if or how much the cancer cells are active. We will also have the MRI and the MIBG on Monday and Wednesday respectively.
When we have all these test results we will have a much clearer picture of what we are looking at and where to go from here.
It has just been confirmed that we will be leaving the Target House by the end of next week. We will be moving to an apt here in Memphis. I will update with the new address details when I get them! This will be a bittersweet move as we have made Target House home for the past 7 months. We have many memories to take with us of our stay here and will miss so many of our friends here as well! There is a waiting list for the Target House with many kids from Transplant and/or International kids that have low immune systems and are unable to fly back and forth. We realize this need as we were at that point at one time and are thankful for being able to leave it for another family to call home! We will be packing over the weekend as we will have a very busy week ahead of us. Thank you so much for all your prayers sent up for Miss Madelyn and our family! Your words of encouragment are what have carried us through the bad times! We look forward to hearing from you!!
Love to all
Brandi
Thursday, April 21, 2005 8:00 PM CDT
Hello everyone!
Maddie had her CT scan this morning and did SUPER!! She lays so still and makes sure that I hold her hand above her head as she gets her scan! This is all that we had to do today at St Jude! There was a Sterling Jewelers event and touring going on at the hospital. We did not get to attend the event but it was brought to my attention that our little Miss Madelyn has a poster size picture up in the Atrium of the hospital! I have not seen it yet but I believe it is the picture with Kaleen who we did a photo shoot with for Sterling last year!!
Tyler and I attended a dinner at the Target House tonight which was to Thank the Volunteers here at the Target House while Madelyn stayed with dad and took her daily nap!! It was a very nice tribute for all their good works in 2004!!
We have speech therapy on Friday (tomorrow)and lab check along with a D-Clinic visit with Dr Hartford, our Fellow. We are telling our story tomorrow afternoon to Country Cares on behalf of St Jude. This is a big promotional for the hopital's fundraising which puts the families story to the music of many country artist.
I am hoping to get the Bone Marrow results back tomorrow along with the CT scan but like I have said before, without the MRI and the MIBG they will most likely not have any plans on treatment. Please, please keep our little Miss Madelyn in your prayers as we are dealing with a beast. Please pray for her bone marrow to continue to be CLEAR! We are praying for ZEROS!!!! It would be wonderful news if her CT also came back CLEAR since we know before radiation she still had her primary tumor in the abdomen.
Praying,
Madelyn's Mommy
Wednesday, April 20, 2005 10:10 PM CDT
NEW PHOTOS JUST ADDED!!!!!!!
Hi everyone!
Madelyn did not have her MRI today. They have rescheduled it for Monday. It turned out to be a good thing considering that our apartment really needed a good cleaning and de-cluttering! We can now eat at the dining table again! LOL
She has her CT scan tomorrow at 9:45am. She has a contrast she has to drink with 3 oz of fluids each time at 7:15am, 8:15am and 9:15am before her scan. She does not have to be sedated for this!
She has been really lovable lately and we are soaking up every bit of it! She has been laying her head on Daddy, Tyler & myself saying, "I love you so much"! She does this many times a day!! We love you too Madelyn, with all our hearts!!
Love to all,
Madelyn's mommy
Monday, April 18, 2005 1:31 PM CDT
What a fun filled weekend we had! The JabberBlabber or in Madelyn's words JabberJabber Birthday Party was so neat! We filmed the event as Madelyn just clapped and danced and shouted with the others and then was very contained and did so well during the movie Shark Tale! We ate pizza and ate cake which was a huge cake in the shape of JB-He's an alien. He's tall, green, round in the middle, big bug eyes on top, a long spiral tail and his tongue hangs out to the side!LOL
Madelyn did go up and hug him but only with dad! I took pictures and will be posting it soon!!
The benefit dinner that night went very well. Madelyn had tired more by this time, one minute she wanted her picture made and was very cheesy, happy and the next she hid her face and cried!
Overall there was a great turnout, folks came and went which was good for Madelyn as too many at one time would have been overwhelming! Some of the money will be used for gas, and the rest to a medical bill for Madelyn at Vanderbilt still owed for when she was first diagnosed!
Thank you so much for the love and support the town of Dyersburg has shown to our family. Thank you to Donna Everett and Tabitha Manuela for your hard work in hosting this benefit for us. It was so nice to see our friends and meet new faces! I know there were many who could not be there but I know there are many things going on at this time of year! Thank you all for your love, support and prayers!!! You all mean so much to us!!
Thank you also to the many businesses, churches and people who donated their time and resources to make this event possible!!
We had our lab work checked today in Assessment Triage and Madelyn's Hemoglobin is up from 8.3 to 8.9!!! Yeah!! Everything else looked great! We did not get to see Dr. Furman as planned or even our nurses. They just brought labs to us in the waiting area.
We have our Bone Marrow Aspirates and Biopsy tomorrow. To give you an idea of what happens with this procedure: She will be sedated. They will stick her little back on both sides of her pelvis bones to draw bone marrow and also take a biopsy of the bone itself. This makes her sore for a few days. Neuroblastoma (depending on the stage) forms in clumps in the bone marrow. Which means they have to stick an area that has cells to know that it is there or how much is there. So it is sometimes hard to detect disease with just this test alone. This is why they run her through many test in order to fit all the pieces together! Our prayer request is that these scans this week bring the good results Madelyn needs to beat this beast!
The week before and the week-of scans is very intense as we try to think positive but our fears are obviously still there. I know that God has it all planned out for our little Madelyn and I believe with all my heart and pray that His will be done!
We appreciate all the guestbook entries and always look forward to hearing from you! Thank you!!
We are on our way to meet my mom to pick up Tyler! Madelyn is at the door saying "Let's KICK IT!" So that means she's ready and I gotta go!!
Trusting God's Will,
Brandi
Friday, April 15, 2005 2:49 PM CDT
Hello to all! We are now back from the low flat lands of Illinois! It was so great to see my sister and the family. The kids were so full of excitement and energy! I miss them already!
Speaking of flat lands in Illinois...I have to tell you about an interesting encounter along the way! For the first time in my 30 (almost 30) years I have witnessed a tornado!! Yes, about 1/4 mile from the Interstate in Franklin County, IL! Neal was driving, I was in the back seat. Tyler & Madelyn had their earphones on watching a movie and Neal and I at amazement ask if that was what we thought it was and sure enough from just a point in the cloud it formed a very long tail to the ground with what looked like white smoke at the base of it! The sky was black around it. Our hearts were racing to get past it. We finally showed Tyler as we past by as he may never get to see another Hopefully! We turned on the radio and sure enough we were under a tornado warning in that county! Duh! We spotted it for sure!! When we were finally out of the clear I called my sister to tell her we were risking our life to come see her and went on to tell about this scary tornado and how scary it was and suchand that we were under a tornado warning for another 30 minutes...then my cell phone went out! So to my mom who I was calling next, I'm glad it wasn't her that it went out on!! She would have freaked!
For those that do not know. Our friend, 13 year old Ali Mills went to her eternal reward on Tuesday evening. She has been fighting Neuroblastoma since the age of five. She had transplant in November and has been cancer free. She had been struggling with side effects from GVHD.
Miss Ali will be greatly missed! What I remember most about Ali is that she was such a free spirit! Always smiling and cheering! She would walk down the hallways practicing her cheer routines!
We were in a video with Miss Ali back in the fall of last year where Ali was the star of the show! It was a video for a Math-A-Thon in the Medicine room. Maddie and I along with some other patients were sitting in chairs in the background while Ali, with her bubbly personality spoke on behalf of St Jude for the video! Please keep this family in your prayers.
We had labs today and Madelyn's platelets are starting to go back up from 80 to 104! Her Hemoglobin was down though from 9.4 to 8.3. Her ANC is at 1000 which is OK!! We will have labs again on Monday and a visit with Dr. Furman!
We are gearing up for our scans all next week! Madelyn heard us talking about them and ask if they were putting her to sleep!! She can't wait! Tuesday is Bone Marrow Aspirates. Wednesday is MRI and Thursday is CT scan of Abdomen/Chest/Pelvis. We were told today that we should get results of these on Friday!! However, we will not have the MIBG until the following week so I am almost sure we will not get a plan of action until then.
We had a pulse/ox level done today which measures the amount of oxygen she is taking in and we were at 99-100!!! This is done periodically on Madelyn since we had the issue with her having some lung damage back in November.
She had an Echo/EKG done today as well. The chemo Adriamycin that Madelyn has taken in the past can potentially cause heart damage but all looked well!!!Thank you God!!
We have a very busy weekend planned! Tomorrow morning we are taking Madelyn (Tyler is not with us this weekend)to the JabberBlabber Birthday Party! For those that have never heard of this paper that comes out once a month in Memphis is really missing out on a really fun paper for kids! You can usually pick one up in the PC lobby at the hospital! (Not sure of the other places)
JabberBlabber is the name of the paper and also the mascot for the paper which will be turning four years old! There was an entry form to fill out and send in to the paper for a chance to win tickets to the Birthday party and we WON!!! We will be going to the theatre at 9:30AM where we will watch Shark Tale and get Free Popcorn and coke then afterwards will be treated to pizza and birthday cake!! What fun!!!
Then we are off to Dyersburg to visit with my best friend from high school, Emily, who is in from Nashville. From there we will be heading to the Spaghetti Supper Benefit being held for us by some very dear friends.
I have posted the information for this at the top of this journal entry!!
We are so excited that Madelyn is feeling well enough to attend the benefit! We are also excited to see everyone as we miss everyone so much and are eager to meet the many folks that we have not meet as of yet who have been following our little girls story!!
This journey has been a roller coaster but it is through the many supporters that sign our guestbook, call, visit, write to us and pray for us that we are able to COPE! And most of all have HOPE for a better tomorrow!! We thank you all for all of these things that have been a blessing to us! I cannot say thank you enough for your love & devotion to our family!
Love to all,
Brandi for the Beamons
Neal, Brandi, Tyler & Madelyn
Monday, April 11, 2005 11:32 PM CDT
Hello to all!
We were able to sleep in today since we didn't have appts until 11:30 and at exactly 8:00AM I woke to the pounding of landscapers outside which sounded just like a hammer hitting metal more like at the head of my bed!! They stopped for just a bit and just as I was dosing back off the pounding began again! I guess it was time to get up!
Neal, Tyler, Madelyn and I were all together at the hospital today since Neal & I had to have our blood drawn. I did very well as I have been known in the past to pass out while doing this! I did so well that I got two toys from the treasure box!!
As the nurse was getting things ready, Madelyn had tears in her eyes and held my hand and said, "Now, be a big girl mommy." and "Don't cry". She told us all about her getting stuck yesterday which was really two months ago when she had fever one day! I ask her if it was going to hurt...hoping she would say no but plainly said, "It gonna hurt REAL bad!"
I had to be stuck in both arms to get all that they needed and as we were changing arms she reached under the table and grabbed my free hand and held it the entire time! She was just the most precious angel today making it all so real what she goes through. It makes me feel so good & proud to know that her actions today are our actions of how we are with her at these delicate times!
Afterwards we all went to the cafeteria and ate lunch together while waiting for her labs to come back.
Her counts are down from 1200 on Friday to 900 and her platelets were at 80 (we transfuse at 20). We are hoping this will improve in the next couple of days as she is now off the Accutane.
To clarify about going to transplant,,,we will have all our testing done in 2 weeks. We will not know until then if or when we will go to transplant. We will meet with Dr. Furman after testing to discuss our next steps in treatment. The blood testing on Neal & I today is just a preliminary proceedure to gather the info they need so that it is done when they do know if we will go to transplant.
What we do know also from today is that we will start the 4th round of the same chemo (Irrinotecan & Temozolomide)in two weeks.
After clinic we received a visit from Dwight, Karen & Kyle, friends from Dyersburg. We had dinner and visited the mall, of course to ride the carosel!!
Tyler was so excited as we finally 'gave in' or maybe a better word realized he was old enough to watch the thriller movie JAWS! He will be 12 in August but we have always been very cautious on his TV/movie watching!
Much to his surprise, it wasn't the 'thriller' he thought it would be!LOL I bet we'll be up with him all night!
We are planning to go out of town tomorrow to visit my sister and brother-in-law in Illinois for a few days. They just had their 3rd little girl in March!
Love to all,
Brandi
Sunday, April 10, 2005 9:10 AM CDT
Update on our Neuroblastoma Warrior Ali: I just received an update on our friend Ali...with a heavy heart I have to tell you she is not doing well. Her mother, Nancy received news that Drs are at their ends with treatment options and have now put her on comfort medicines only. Please pray for Ali and her family and the many friends & loved ones involved in this painful process. We become very attached to these kids so it goes without saying that giving them up is gut-wrenchingly painful.
Praying for peace and understanding,
Brandi
Hello to everyone! So sorry about the long delay in journaling as we have been on the go since last week!
After clinic on Friday we headed to Dyersburg to take care of some things. While there we were able to spend some much needed time with some of our friends!! On Friday night Madelyn was able to visit with The Paschals. Madelyn had so much fun visiting, going to dinner and playing with everyone!
Thanks to Donna for everything! We all had a great time visiting on Saturday! Madelyn and Tyler had so much fun playing with Emilee and Nick too!
About our clinic visit on Friday...Madelyn's platelets had dropped some and her ANC was down to 1,200. Dr. Hartford said this sometimes happens on Cisretnoic Acid ie Accutane and should go back up when finished. She will finish with this tonight!
OK now take a deep breath...Monday, Neal and I have an appt to have our blood drawn. They will be looking for a particular marker on our cells to see which of us have the better match for Madelyn and the most antibodies. Yes, this means we are headed to another bone marrow transplant. Depending on the type of transplant, they could use ours or an outside donor.
I have had many emotions surrounding this news. On one hand, I was suspicious but 'at ease' with our treatment as I raised the question several weeks ago about her eventually becoming immune to the chemo she has been taking since December. She has been doing very well with it but knowing this beast I am trying to be cautious as well. On the other hand I was very shocked that the word transplant AGAIN was raised. Madelyn has been doing very well on this chemotherapy but apparently they would rather be on the defensive rather than the offensive when handling this beast.
I am looking to God for understanding as this last transplant almost took our daughter's life in November. I do not want to go back to those dark days. I know that these doctors are brilliant and have more knowledge of this beast than I can ever research but it is very painful to think about another transplant when I see our baby looking and feeling great after all she has been through, she is getting her hair back, walking and playing, and given the chance to enjoy LIFE again.
We will do testing in just two more weeks. If these test show she is clear of neuroblastoma in her bone marrow we will go to another transplant. If not, I don't know at this point what will happen except that it will not be good. So only with God and the power of prayer will it be a WIN-WIN situation!! I know this and I believe this in my heart but my mind will not let me have the peace I need yet to understand why neither of these choices seem good or fair.
First Thank you God for our many blessings!
Please pray for continued strength and understanding for Neal, myself, Tyler, Madelyn our families and loved ones.
Please pray for knowledge and wisdom of the many doctors behind Madelyn's treatment and the nurses who carry out these orders.
This weekend was Day of Remembrance at St Jude. You can't help from being emotional as you remember why so many families are here. A very dear family of ours was in town for this day. Travis and Chastity Shexnayder was here in remembrance of Angel Zoie! We were able to meet them for dinner Saturday night at Zoie's favorite restaurant Spaghetti Warehouse! We rode the trolly as Zoie loved this and boy did Madelyn love it too! She squealed everytime the horn blew!! We will miss them but are hoping to see them again soon in May as we are hoping to go on a St Jude fishing trip to a Farm in Baton Rouge, LA! You can read more on Zoie's life and the many tributes her mom and dad are doing to keep Zoie's story alive! www.caringbridge.org/la/zoie
Thank you for your love and prayers!
Looking to God,
Brandi
Tuesday, April 5, 2005 11:25 AM CDT
MADELYN IS NOW FINISHED WITH RADIATION!!!YEAH!!!!
We would like to say THANK YOU so much to all the Drs and nurses of Radiation & Recovery who helped take such good care of Madelyn and helped Madelyn feel extra special the past 3 weeks!
It makes me feel just that much more proud of our hospital that we have staff who REALIZES this is a CHILDREN'S HOSPITAL and is extra patient with these kids!! Especially Madelyn as she is sometimes High Maintainence!!LOL
A special thank you to Mr. Horace who allowed and showed Madelyn how to push her own buttons to administer her 'white stuff' or sleepy medicine which made her feel like such the BIG girl that she is! He made sure everyone on staff knew Madelyn's name for the day! ie Chipmunk, Monkey or Squirrel!LOL
They all greeted Madelyn before her last session with balloons and a T-Shirt signed by the staff which read YOU HAVE BEEN RADICALLY CHANGED! She also received a teddy bear and blanky with glow in the dark stars on it!
We had D-Clinic today. Dr Furman will not be in until Wednesday but not sure if they will schedule us an appt then or not. They started Madelyn on a stool softner for the constipation she is having.
The Accutane Madelyn is on has caused her lips to become dry even through ointment but she is not having the severe itching she had before! We will finish it on Sunday! God has been so good to us! Thank you so much for all your prayers for our little girl and our family. Please pray that Madelyn's radiation will be a success! We are praying for Remission!! Testing will be in 3-4 weeks.
Our time here at Target House will be ending very soon. We have mixed emotions about this as first we have sold our home in Dyersburg in December and will be basically starting over which is very scary and then there is the wonderful feeling that they think Madelyn is doing well enough to just come back and forth for her additional chemo treatments and visits!
Friends from Dyersburg called us over the weekend and are having a fundraiser for Madelyn and our family. We are blessed as this comes at a great time as we are about to incurr many expenses of not having the housing that St Jude as been so wonderful to provide!
I will be posting the information at the top of Madelyn's page. We will all be attending the fundraiser as we are very excited to see everyone!! It will be a very special day for all of us!
Prayer Request:
Our Neuroblastoma warrior Emma Grace is on a ventilator. She is in a very delicate state. Please visit her site for details of her condition and give her family words of encouragement at www.caringbridge.org/ar/emmagrace.
Ali Mills has been in the transplant unit on the 4th floor for over 130 days now. She is 13 years old with NB stage 4 and is continuing to do her physical and occupational therapy but still has a very long road ahead of her. She continues to struggle with her liver.
I talked to Mark Wier's mom yesterday. They have not gotten any results back from the brain and spinal scans. We are hoping that "No news is GOOD news"!!
Our friend from close to home, Jonathan Summers who is battling Hurler's syndrome is now back home in Sharon, TN and out of the Target House!! I had a chance to visit with his mom and little Miss Madison, his sister, yesterday! He is doing very well and they all looked great! It is so wonderful that St Jude does more than cancer research! They also research and treat many other catastrophic illnesses too! Visit Jonathan at www.jonathansjourney.com as research has showed that he will still have much to battle as there is no cure for Hurlers at this point.
Our dear friend Brooklyn and her mom will be heading back to Portland, OR on Wednesday. We have become very close to them as well and will miss them very much! We have had so much fun this past week getting to spend much time with them. Brooklyn has a very rare condition known as Osteopetrosis. She now has a website set up for her at www.caringbridge.org/or/brooklyn.
Please visit our friends and keep them in your prayers!
We also have many more friends that we have met throughout our journey not mentioned here but that we are keeping up with and praying for daily as I will be posting them to a link soon so that you may know who they are!
We thank God for all that He has given to our family and most of all the love that surrounds us! Thank you so much for the many prayer warriors that are so faithful and sincere! Thank you for being with us in bad times and good!! We love you all!!
NEW PHOTOS HAVE BEEN ADDED TO THE PHOTO ALBUM!!!
All our love
Brandi
Sunday, April 3, 2005 1:24 PM CDT
NEW PHOTOS of our Make A Wish trip added above!!!
The weekend is going well! We had a big day with our St Jude friend Brooklyn and her mommy yesterday! They had rented a minivan for the weekend so now there was plenty of room for all of us to get out and enjoy some time away from the apt!!
We took Madelyn and Brooklyn to the mall where we had lunch and rode the carosel!! We did not stay very long as it was very crowded!! Of course it was Saturday!LOL
We then went to see our friend Amber's softball game but even with blankets it was a bit too cold so sorry Amber we'll have to come see you play (my fav. sport!) another time!!!
We took Miss Brooklyn to one of our favorite places in Memphis, Paint A Piece! Where we made their footprints on plates and Maddie painted a pair of flip flops!
Needless to say, Miss Brooklyn was not having a good day so we had to leave before finishing to get these kids a nap!!LOL The funny part was her pulling over a full cup of paint all over her mommy's lap! Oh the memories!
I'm not sure that we needed any more caffeine or sugar as hyper as we all were but we stopped by StarBucks anyway and then to ColdStone Creamery for the kids! They have a cake batter flavor icecream there...It was so good! Oh yeah, I ended up eating Madelyn's too! She was too tired to eat.
Well, Tyler will be back tonight! My mom (AKA Grandma Sherry)will be picking him up from his dad's as she is coming to visit a few days here in Memphis!
I will update more tomorrow as we will have clinic visit with Dr. Furman. Thank you so much for checking in on us!
All our love,
Brandi
Friday, April 1, 2005 9:21 PM CST
We have decided that St Jude is not where we want to be anymore. We decided last night to pack everything up and move. We first thought we would take a bus but that it would be too crowded then we thought we'd take a plane and that was too expensive so we just got in our car and headed off. We may be back, we may not. Maddie is feeling so good so why not! Tyler would rather not be in school anyway so heck with all that complaining. I hope we end up in a very quite and peaceful place. An island in hawaii sounds good but we'll be in the car. Maybe just hanging out at the beach will do just fine! Or going to the mountains in Gatlinburg. Oh how relaxing...I can't wait to get there....
Oh! Happy April Fool's Day! I just love this day!!
Would you think I was joking if I told you our car was hit on Poplar Ave as Madelyn and I were heading to the Target House today by another St. Jude Mom? Well it happened! As I got out to see if I had a dent in my bumper out pops Jake's mom, Stacy!! It was just a bump and the car is fine Stacy! No worries!!LOL In her defense, it was noon traffic and the red lights were not working!!LOL
Jake is going on his Make A Wish trip to Disney tomorrow!! Please pray for safe travels and a fun time with his family! Visit them at www.caringbridge.org/la/jakeowen.
We had D Clinic today with Dr Hartford. She changed a few of Maddie's meds. Just stopping one antibiotic, Cefixime (which is for when she is getting Irrinotecan because of diarrea) and starting back on another, Septra. And stopping the Omeprazole (antacid). She still gets her antinausea med, Ondansitron, Acyclovir to prevent viral infection, and Fluconozole to prevent fungal infection.
We will continue the Accutane for a total of 14 days. Which means she will be finished next Sunday.
During recovery today our nurse Nicole noticed a small nodule on the right side of Madelyn's chest. Dr. Hartford and Sandy both took a look at it during clinic and want Dr. Furman to look at it on Monday. We are to keep an eye on it over the weekend for size...
Madelyn had her line removed back in Oct for infection and had another double Hickman line replaced on the left side. This could just be scar tissue from that surgery...
We should be having clinic visit on Monday.
This afternoon, Madelyn and I went to visit the kids and teachers at Immanuel Lutheran School! I think they were all surprised at how much Madelyn had grown since Jan. and that she did not have her 'chipmunk cheeks' anymore!
We presented them with a Bronze Mickey Mouse statue trophy from MGM Studios which read "You Deserve An Award" along with a red plaque in honor of ILS as a token of our appreciation for their hard work and their love for Madelyn and our family!
The 8th grade Beta club and sponsor Mrs. Macklin were the organizers and driving force for this wonderful event! Not only did they raise the $5,000 needed for Madelyn's wish grant but turned in over $2,500 more to Make A Wish towards another wish grant!! Way to Go ILS!! Thank you so much!!
Have a blessed weekend!
Love to all,
Brandi
Thursday, March 31, 2005 7:45 PM CST
Madelyn has only 2 more days of radiation!! She is just doing much better than I expected! Her little skin is just so sensitive! Thank you for your prayers during this phase in Madelyn's treatment.
Much to our surprise when we got back to the Target House today there was a package waiting for Madelyn! It was from the Hasbro Entertainment Company. They sent Madelyn the newest edition of the game CandyLand, a CandyLand surprise ink game book, Candyland game Beachtowel (with real game pieces!) and the new movie The Great Lollipop Adventure!! WOW!! What a nice surprise!!!!
I am hoping to get an update on our little friend Mark tomorrow!
We also have D clinic visit tomorrow so I am hoping to find out what our next phase of treatment will be! Thank you for checking in on us! Please be sure to sign our guestbook so that we know you stopped by!!
Love to all,
Brandi
Wednesday, March 30, 2005 8:56 AM CST
Update: Madelyn had another day of radiation. Day 12 of 15. She is doing very well!
She received a baby doll complete with potty, magic milk and juice bottles and a little puppy today after recovery!
Today was Doctors Day at the hospital! They had a Big Ice Cream fest which we did not get to attend.
I just wanted to say hats off to all the doctors at St Jude for all their hard work, love and devotion to our little princess and all the children for which they devote their lives to working so hard for!!!! THANK YOU!!
We were pleasantly surprised today to have friends from Dyersburg come by the Target House this afternoon!! Thanks 'Miss Donna', & Mrs. Geneva for stopping by to get your "make-over"!!
Madelyn had a ball doing what she does best! Making one look their very BEST!!LOL
I ask what the # of patients were up to this morning just since I had mentioned it earlier and as of this weekend it was 22,006. That's the # of patients since St. Jude started in 1962. Now what is that per year...WOW. And this is not the only hospital...pure devestation.
love to all,
Brandi
Tuesday, March 29, 2005
Hello! After much exhaustion from yesterday I did not get a chance to sit down and journal so I am doing it alittle late!
We had a 10:30 appt for radiation this morning and Maddie was Monkey again today! Still loving her white stuff in her line and always anxious to tell them nurses to "get it"!
We got to eat lunch with Ryan and his mom & dad who are from the Knoxville area. His dad, Jeff was raised in Dyersburg and Ryan's grandparents still live there!! Ryan has Retinoblastoma and is doing very well! It was so nice to get to 'catch up' with them!!
We had a visit with Dr. Krasin, radiology doctor, and he informed us that Maddie will be finished with radiation including the added dose on Monday!!! They are only doing 15 rounds instead of 17!! Apparently they were going to do 1.8 gray? (I understood this to mean an amount!) per day and were able to go up to 2.0 gray which means getting more done in less time!!Yeah! That's wonderful news!!
After the clinic visit, Madelyn and I were on our way to pick up one of the new St Jude bracelets in the outside gift shop that is now available.
We ran into Miss Anna from ALSAC who ask me to tell our story on one of the TV stations (Knoxville news). The setting was in the Danny Thomas Memorial Garden which has very beautiful and relaxing waterfountains and sitting areas!
I have been keeping busy in telling our story! This is the 5th time I have spoken for the hospital! It is a little nerve racking to say the least but I do love it as it helps me to feel I am 'giving back' in some way! I am so proud of this hospital and if our story touches just one person to give to St Jude, our journey will have made a difference!
Please support St. Jude which helps support us and the many children here. I will be posting a link soon to a webpage with many of our friends fighting cancer and other catestrophic illnesses!
When we started at St. Jude our patient number was 20,616. In one year that number is around 21,600. WOW!
We enjoyed a fun filled day and evening playing with one of our St Jude friends, Brooklyn on the playground at Target House. Later we ordered pizza and watched a movie! As the kids napped, the mommys were able to look at Disney Pictures and set up Brooklyn's website!!!! Yeah! Though her mommy is here by herself this time around and may not get to update too much at his time!!
Well that was yesterday and we have to be at the hospital in 15 min so I will update soon!
Love to all,
Brandi
Monday, March 28, 2005 2:37 PM CST
Hello to all! Hope everyone had a great Easter!! The Easter Bunny was very good to Tyler and Madelyn (they got lots of chocolate!!!)
I was talking to Madelyn the night before about the Easter Bunny coming that night and her eyes got sooo big and said, I gonna see that Easter Bunny and get him a BIG HUG, like this... and gives me a BIG hug, then says then I gonna get him a BIG KISS like this...and gives me a Big kiss on the cheek! My heart just melted! Then she went and did the same to daddy! Boy that Easter Bunny sure is something special!!!
Ours was good! Madelyn was feeling and doing great! We are all well healthwise! We were able to visit with family but I have to admit I had such a guilty feeling as I was at my grandparents home enjoying such a wonderful meal and time with my family as I knew some of our little St Jude friends were having to either be at the hospital or not able to go home. All I felt I could do is stop and say a prayer...
Sometimes my heart gets so heavy that all I only want to do is be at the hospital seeing all our little friends we've met over the past year! I am so attached to the hospital.
When we are there everyday, Maddie and I just sit in clinic waiting rooms to visit and play for sometimes several hours while we wait for appts instead of going back to Target House or out and about. Like today we had 4 hours between appts so we just hung out painting, putting puzzles together and playing baby dolls.
We only have a week and a half until radiation will be over and then we'll have to move out of the Target House. We've been here almost 7 months now! It has been a wonderful environment to live! Actually very peaceful!
We are going to miss so many of our great neighbors who we have become friends with!
Well there is not much to report as far as Madelyn goes. Her labs were great today and she is feeling so good!!!! I am on my way to get pictures developed from Easter and will be posting ASAP!!
Love to all,
Brandi
Friday, March 25, 2005 1:14 PM CST
Hello everyone!
Update on our neuroblastoma warrior Mark Wier: They had clinic today. Mark has tumor back on his legs, arms and pelvis. There is also a small spot in the head area. They are scheduled for an MRI of the spine next Wednesday. He will be starting on nonprotocol chemo tonight. ICE, Topetecan, and Cyclo. His body has seen the latter two but had good response before with them. I believe Heather said they will do this for 5 days then wait for counts to recover then start again. She did say, this is their last ditch effort as far as chemo goes. May God give this family peace in their decisions, strength to endure side effects and HOPE for a brighter tomorrow! We know from past experience that there is power in prayer and there is HOPE! Please say special prayers for him and his family. He does not have a webpage but I will update specific prayer request as I know more.
Today Madelyn had her radiation...day 9 of 17. We're just over half way done with this phase of treatment!!! She has been doing really well with it so far! Last night her right eye showed alittle redness and this morning it was alittle bit matted. The deep hydrating cream Bifine seems to be helping when this occurs! We had D-clinic visit with Dr. Hartford today. We will be starting the Accutane on Monday as planned. Madelyn was so funny (imagine that!) in clinic today. Her baby got sick all over my shoe, her seat she was sitting in and the Dr's keyboard. She had a total mess to clean up!! Then She said the Dr needed her baby to pee pee in a cup. She even pretended to put the lid on it and a paper towel around it! When Dr Hartford came in and ask what she was doing as Madelyn was putting on the baby's diaper. Maddie told her she needed to send that cup of pee to the lab for her!!!LOL What these kids go through is normal behavior to them!
We are looking forward to a big Easter weekend. We will be visiting Granmonna & Pa and having a Big Easter Egg Hunt on Saturday and then on Sunday we will be visiting Grandma Sherry and having a Big Easter dinner at Great Grandma and Grandpa Pierce' home in Greenfield!
Hope everyone has a wonderful Easter weekend!
God Bless,
Neal, Brandi, Tyler & Madelyn
Wednesday, March 23, 2005 1:29 PM CST
Today is Day 7 of radiation. For those keeping up day 7 should have been yesterday but as the morning started yesterday I guess Maddie got up on the wrong side of the bed!lol I was up on the computer when she came in the room crying wanting only her paci, then a blankee so I ask dad to bring it to her as I was consoling her then... she wanted her choco milk so…while dad was up and it was early and she was crying he got her some choco milk! As this seems typical and harmless well after she was guzzling it down I shouted Madelyn…you have a procedure today as I was taking the cup away! She was so mad at me! I felt so bad. So I had to call the radiation team and low and behold they could not sedate her yesterday! They are going to add it to the end of her treatment. WOW! This can happen so fast! Last week her sedation was at 7:45 am everyday so we would get right up and leave and this week it is at 10:45.
To be honest it was nice having the day off! Tyler is now back from Spring Break and so I was able to help him with his school work. He is being home schooled and Neal has been his teacher since he started in January due to Maddie and I being at the hospital most everyday!
Today went well. She was Monkey today! The radiation team has to ask her every morning who or what she is since it changes daily! LOL
We had a chance to spend some quality time and eat lunch with our friend Jake Raborn and his sweet mom, Stacy today! I am so glad we had a chance to visit longer than normal today Stacy! Visit Jake at www.caringbridge.org/la/jakeowen.
UPDATE on our neuroblastoma warrior Mark Wier:
I spoke with his mom & dad this morning and got to see Mark too!! They did a full body bone scan on him and are working him in to get a MRI of the spine this week to hopefully rule our any tumor on the spine. He will be getting 3 weeks of total cranial radiation along with chemo. They are not sure what kind yet. They will meet again with his doctor on Friday. They are staying at the Grizzle House til at least Friday and will most likely move back into the Ronald McDonald House.
On a lighter note, I wanted to share our most recent happy event which is also what the photos in the photo album are from! Our Make-A-Wish trip to Disney!
A dear friend of ours, Deena Pearlman approached the Make-A-Wish Foundation with the idea of her kids school, Immanuel Lutheran to raise money to grant the wish of our precious daughter. They started in August 04 and had the $5,000 requirement by Dec. 04!
We had been through so much in the past year that we were all so ready for a break! And when Maddie was put on a vent back in Nov defying odds as she started to recover it was made more clear how very much we wanted to give our daughter all her heart desired!
Maddies favorite movie is Cinderella and she has always enjoyed being read princess stories. She had always been told the real princesses lived at a magical place called Disney World! So naturally when approached by Make-A-Wish granter, Brooke and volunteer, Carrie at the Target house we should not have been surprised when ask, “If you could go anyplace in the world where would it be?” She replied, “KRYSTALS”! She wanted a cheeseburger plain and a small coke! LOL
After much talk of princesses and how she wanted to see Snow White it was obvious how much fun she would have at Disney World!
The entire wish granting was such a picture perfect day. A day filled with many emotions! I was so happy that my mom and the many friends we have met through this journey were there with us to enjoy what I describe as a “Celebration of Life”.
To know that everyone put there heart and soul into this one little girl who many had never even met is an indescribable feeling.
We would like to say Thank you to all the kids, parents, and teachers of Immanuel Lutheran School and Church, The Pearlman family for all your hard work and especially your friendship, people and businesses that donated items, to our limo driver, Tom Cassidy, to all the many friends from Memphis we have met through this journey. And to the Make-A-Wish foundation and supporters of Make-A-Wish! We are forever grateful and we love you all!
It was a rainy day on Jan 7, 2005 but that didn’t keep us from enjoying this special day!
Our day began by being picked up from the Target House in a limo!
We entered the gym through candycane streamers. WOW!!!! I never knew a gym could look so magical! The entire gym floor was a replica of Maddie’s favorite game CANDYLAND!! Tyler, being the seemingly shy 11 year old he is, played the game as Maddie’s competitor!
Joseph, Deena’s son, would hold up giant color coded cards indicating where each would move up the trail when it was their turn!! Madelyn, being helped by Deena daughter Amber, and Tyler went through the Forest of Gingerbread kids, Peanut Patch, Gumdrop Mountains, Peppermint Pond, Lollypop Woods, Lady Licorice at Licorice Forest, Ice pond with skating princess and then through Chocolate Swamp. Maddie would receive small surprises along the way until finally ending the game as the WINNER! At the end was a giant air filled jumping CASTLE !! Complete with huge icecream cones and shiny pieces of candy (made out of paper plates and colored cellophane wrap)! There to meet her was Cinderella, Barbie, and Snow White!! There was a big red (her fav color) box with her name on it for her to open. As she opened the box out floated blue and white Make-A-Wish balloons tied to a Disney Princess Banner as the crowd shouted “CHIPMUNK, YOU'RE GOING TO DISNEY!” She then went to Snow White and wanted to be held by her the entire time!
Now…Maddie probably did not know what a wish grant was but as Make-A-Wish volunteer said, “You have just granted Madelyn’s wish!!” She really just wanted to meet Snow White!!! Boy, how dreams can become reality if only you can imagine them!!! Like I said a very emotional day!! A day filled with tears of joy that’s for sure!!
After many pictures with the princesses, Prince Charming, Mickey and Minnie, the Queen, a fairy princess, and all the Candyland characters Maddie and Tyler enjoyed opening many gifts to take along on their trip!
The day ended with a trip in the limo back to the Target House after a quick trip to Taco Bell! This will be a beautiful memory in our life that we will be sharing and talking about for many years to come! As it was a day filled with HOPE, JOY, LOVE and INSPIRATION to the many people involved!!!
I am hoping to get more pictures of our wish grant and trip posted soon!! And I will be journaling soon all about our Disney trip too as for now I am needed in the kitchen to make lunch!
I know this was a lengthy journal but as I have just started this website for our daughter I want to share and detail many of the past events! We hope you enjoy listening! Please be sure to sign our guestbook!! We would love to hear from you!
COUNTING GOD'S BLESSINGS,
Brandi
Tuesday, March 22, 2005 9:37 AM CST
UPDATE on our neuroblastoma warrior, Mark Wier: He is stable at Lebonheur. He is on a steroid for swelling, Loratab and Morphine. He is out of ICU and should be coming back to St Jude today. Mark has relapsed...they know that it's back in his bone marrow. His mom & dad will meet with Dr. Santana today to dicuss their next treatment options.
Please keep this family in your prayers as they are in much pain and facing a difficult situation today.
I will keep you posted as I find out more information.
Love to all,
Brandi
Monday, March 21, 2005 4:33 PM CST
Today was day 6 of radiation. The day was pretty long being that radiation was alittle behind getting us in so instead of 10:45, it was 12 noon and Maddie was getting so hungary! The staff is so nice here that it is just too hard to complain! At least she wasn't crying. We did get ALOT of reading in today so that was a good thing!
We had D clinic appt with Dr. Furman and well apparently he has not seen or talked with Dr Hartford about the information I had given her on Friday about the a treatment option sent to me.
We are going to start Maddie on Accutane again Monday. They want to do this with the radiation for extra security. It is liquid capsule opened and mixed with a small amount of peanut butter (for better absorption) on the end of a spoon and given twice a day. When we did Accutane in Jan it really made her lips very dry and her skin very itchy which are the main side effects of this drug. We have to rub her down in vitamin E oil every few hours to help with the dryness. Last time the side effects started at day 5 of taking it.
Thank you so much to our many friends who have been checking in on us and also to those who have signed the guestbook! Please continue to lift our sweet Madelyn up in prayer!
All our love,
Brandi, Neal, Tyler & Madelyn
Sunday, March 20, 2005 11:09 PM CST
URGENT PRAYER REQUEST
needed for a St. Jude friend of ours, Mark. He is now 2 yrs old. He was diagnosed with Stage 4 Neuroblastoma in spring 2004. He had stem cell transplant in January and has been in remission since then. After doing a week long process of scans the doctor called Friday and told them he had a tumor in his brain that was bleeding. He is also showing spots on his liver. They told the family as of Friday before his surgery he had about 48 hrs to live. They did emergency cranial surgery on him yesterday morning and was able to remove ALL of the tumor. They will be meeting with doctors tomorrow to see what their next plan of action will be.
We also have another St Jude friend of ours, Brooklyn who we became close to while living at the Target House together. She and her mom and dad left last month to go back home to Oregon. She was home for about a week before being put in the hospital there for a viral infection. She is now back at St Jude with what could be cronic GVHD (Graft versus Host disease). They will be meeting with Doctors tomorrow as well.
Copied from St Jude website: stem cell transplant complications.
Graft-vs-host disease (GvHD) is a complication that is observed after allogeneic stem cell / bone marrow transplant. GvHD occurs when infection-fighting cells from the donor recognize the patient’s body as being different or foreign. These infection-fighting cells then attack tissues in the patient’s body just as if they were attacking an infection. GvHD is categorized as acute when it occurs within the first 100 days after transplantation and chronic if it occurs more than 100 days after transplantation. Tissues typically involved include the liver, gastrointestinal tract and skin.
Symptoms of acute GvHD include rash, yellow skin and eyes due to elevated concentrations of bilirubin, and diarrhea. Acute GvHD is graded on a scale of 1 to 4; grade 4 is the most severe. In some severe instances, GvHD can be fatal. GvHD is more easily prevented than treated. Preventive measures typically include the administration of cyclosporin with or without methotrexate or steroids after stem cell / bone marrow transplant. Alternatively, T lymphocytes are removed from the stem cell graft before it is transplanted.
First-line treatment of GvHD is steroid therapy. Alternative therapies are considered for patients whose GvHD does not respond to steroids. Chronic GvHD occurs approximately in 10-40 percent of patients after stem cell / bone marrow transplant. Symptoms vary more widely than those of acute GvHD and are similar to various autoimmune disorders. Some symptoms include dry eyes, dry mouth, rash, ulcers of the skin and mouth, joint contractures (inability to move joints easily), abnormal test results of blood obtained from the liver, stiffening of the lungs (difficulty in breathing), inflammation in the eyes, difficulty in swallowing, muscle weakness, or a white film in the mouth.
The incidence of GvHD increases with increasing degree of mismatch between donor and recipient HLA antigens, increasing donor age and increasing patient age.
Please keep them and the many children fighting for their lives in your prayers.
Maddie has been doing well. We had a funfilled weekend as we went to see a movie on Saturday night. At dinner there was a man who could make anything out of balloons and after telling her every animal in the world he could make she told him she wanted him to make her a pink and red crown and princess wand!
On Sunday, we got to spend some time with friends of ours from Dyersburg. Thanks for the visit (and chocolate pie)'Wight',Karen, Kyle, Jada & Matt! We spent the day at the mall. Maddie got to spend some of her gift card money she received for Christmas at Build A Bear. She had a ball picking out exactly what clothes and accessories she needed for Nelli (her Monkey). And of course rode the carosel several times! It has been so nice that they offer free rides for St jude patients and their families!
We start day 6 of radiation tomorrow. We will be meeting with Dr Furman around 1pm to discuss when we will start on the Accutane. He wants to do this in combination with the radiation.
Love to all,
Brandi
Friday, March 18, 2005 4:02 PM CST
Update: Madelyn has started to feel more nausea from the radiation! She got sick last night before bed. She had already had her Ondansitron for the day so I give her Benedryl (this is prescribed for her as extra nausea medicine to help calm the stomach. She was nautious? this morning as well. She has been sitting in dad's lap and and in her little princess chair watching cartoons & movies all morning!
Today was Day 5 of radiation. All went well! After sedation for the past few days Maddie has been wanting graham crackers and the little peanut butters that you dip the crakers into. Being the independant little 3 yr old she is (Been this way since birth!) well...no one could help her and she was having a time trying to get that cracker to dip let alone get it to her mouth! Needless to say she finally ask for help! She has been so thirsty lately and hungary as well. She has been craving hotdogs and bologna for 3 days now! The nurse anethetist in Radiology says they give her a drug in her line before sedation that helps clear secretions due to her getting Ketamine which induces secretions! Maybe that explains the thirstyness!
The radiation is causing some diarreah. Controlled well with Immodium! We had a D Clinic appt with our fellow Dr Hartford today! It was just a checkup to make sure Maddie was doing well. All her counts are good! I would like to share with you an interesting email sent to me from another patient friend of ours. As patients and families fighting these life threatning illnesses it is a comfort to us to share some hope any way we can so I would like to share with you! There has been some interesting news coming from Children's Hospital Boston. A Dr there has discovered what he believes is the process by which an in situ cancer becomes a metastic cancer. This process is called Antigenisis. They have began to develop drugs to arrest this process before the cancer becomes metastic. The problem is finding the cancer in its earliest stages.
In Boston and at MD Anderson they have begun to trial this with patients that have tumor marker testing that is beginning to climb. I believe they are only using this in patients that have achieved an initial remission. The drug that shows the most promise is Endostatin...there is also two others that are approved for compassionate use. There are no toxic effects! It is showing promise primarily with solid tumor cancers, myeloma, brest, colon, pancreas,etc. I give this information to Dr. Hartford today and she will forward to Dr. Furman so hopefully he will know what it all means! I will let you know what I find out!
We will be meeting with Dr Furman on Monday for more labs and check up. In a recent visit last week with another Dr. I told him that I was concerned about this chemo that... don't get me wrong has been very effective for Madelyn and I am very grateful for zero test results but from experience and past histories of drugs I am concerned that eventually her body will become immune to these drugs and will have less affect on her body. He said that was right and ask if we had been tested or put on a donor list? Which we have not. We have no long term results of what we are taking (ie Irrinotecan & Temozolomide). I am hoping to find this information out on Monday!
Hope that you have a great weekend!
Love
Brandi for the Beamons
Wednesday, March 16, 2005 9:58 PM CST
NEW PHOTOS ADDED TO PHOTO ALBUM!!
Okay, I had a great journal done for tonight and somehow lost it so I will quickly give a post for the day and will journal with our Make A Wish trip soon!
Today is day 3 of radiation and Maddie is feeling well. The radiation staff has been so wonderful. They have been so patient in handling Maddie’s special request every morning. For instance, when we go into the first room to get hooked to fluids, get examined, get on gown etc. she wants to sit in the little wooden chair and when they go to examine her they literally have to get in the floor! And when they ask her what her name is she says, “CHIPMUNK”. I try to whisper what her name really is and she insist on correcting me without fail! Every once in a while she will pretend she is someone else but always goes back to being Chipmunk. Like this morning we were in the elevator and a little girl had her jacket on upside down and Maddie said, “She has a squirrel tail”, “I want a squirrel tail” and so all day today she was a squirrel! LOL We were able to get out for alittle bit today as Maddie and dad came up with the idea to go to the ABCQRS store (that’s ToysRUs to you and me!) to get the latest movie The Incredibles which was Maddie’s very first movie to see at the theatre! She hadn’t had a nap all day so after eating a big lunch at the Olive Garden and dinner at McDonald’s she came home put her movie in and fell fast asleep at 7 pm! Now that is either a late nap or early bedtime for her so we’ll be anxious to see if she wakes up before time to actually get up!
We have been so happy to hear from so many. Thank you for signing the guestbook!
Love to all,
Brandi
Tuesday, March 15, 2005 9:28 PM CST
Today is day 2 of radiation and Neal had a chance to go back and view the monitor as Maddie received her treatment. Maddie has to be put to sleep everyday for this but let me just tell you she loves getting her "vitamin K" ie Ketamine. She has a bit of an allergic reaction to narcotics such as Morphine that makes her horribly out of control! So we get this from now on. It makes it much easier on my heart now that it is a good thing to be put to sleep to her! She wakes up so loopy. I have to admit it is quite a site to see!
In recovery with us was a sweet friend of Maddie's who was our neighbor at the Ronald McDonald House. She is from Oaklahoma and doing well. It was great to see you again Jaden, we miss you!
After recovery, Maddie always loves to go to the
cafeteria. She is always so hungary but ends up not eating much!
As we were leaving Maddie found her way into the gift shop where she tried on every style raincoat there was along with the matching umbrella and purse! She was having a ball with dad playing dressup while I got to visit with a dear friend who we met last summer at St Jude! Thanks Melanie for stopping to visit and for being so very sweet to Maddie today!!
Maddie was so tired this afternoon. She has been taking 3 hour naps during the day. Some much deserved time for me to relax for sure! Things have been so hectic the past couple of months with having to be at the hopital so much. We have Tyler here with us now since December and we have been home schooling him through Home Life Academy. It is going great now that we have gotten into a routine and he is really liking it! I am so happy to have him here with us! For nearly 12 months, I was rarely able to see him. He is on Spring Break this week which is a nice break from school work! It seems as though we are the one's learning too!
We were told last week that we may soon leave the Target House just as soon as radiation is over which is about 3 1/2 weeks. We will then go back and forth to the hospital between chemo treatments and scans. We will be doing scans 3-6 weeks after radiation. The goal and our hopes is that this is going to put her into REMISSION! I just love when I hear those words! The plan as of now will be to give additional rounds of the chemo that we have been doing when we are done with radiation in hopes that it will get any tumor cells that may still be there.
Maddie is ready to go night, night. Will update soon.
Love Brandi
Tuesday, March 15, 2005 0:41 AM CST
A Quick update to what Maddie has been doing as far as treatment since Nov. In Dec we started on Phase 1 Studies meaning that we are not on a protocol just experimental treatment. They are trying a combination chemo that is a first at St. Jude's which is Irrinotecan & Temozolomide. This is outpatient chemo. I give her the Temozolomide at home (Target House)and then we get the Irrinotecan in the Med Room one hour later. We were dealing with 10 percent in the marrow when we started this treatment plan and after one round and one round of Acutane(we took this for 1 week in Jan while on our Make A Wish trip MORE to come on our trip soon!)we now have ZERO in our bone marrow! Thank you lord!!
We have since finished our 3rd round today! They wanted to keep it up til we went to radiation in hopes to stay on top of this beast!
Maddie has been feeling & doing really good lately with the exception of "occassional" bossyness! She has dark circles at times I hope only from just the tiredness that comes from the chemo. Her bottom lashes are just about all out again but her hair is still hanging in there trying to grow those pig tails! She told Miss Laura, St. Jude photographer, she wanted pig tails like hers! I can't wait to buy more hairbows!!
We are keeping an eye on her weight, she is at 12.9kg. Down just a hair! Her T-cells are still very low at 3 percent (30-57)is normal. We are checking those again at the end of the month. T-cells are our cells that fight viral infections, she has been on Acyclovir since transplant for this.
Well another phase of our journey started today. Day 1 of Radiation began. I got a chance to watch the whole process on a monitor today and I was very surprized that it only took about 7-8 minutes once they started! Neal will get to go in tomorrow and watch. She will have 17 rounds in all to the abdomen with 13 of those rounds going to the eyes as well. Just after one day I notice that her skin is alittle red and dry. We have a very deep skin cream for her to use during this process! She is very sensitive to side effects. Please pray that they will be minimal!!
Love,
Brandi
Tuesday, March 8, 2005 10:00 AM CDT
Neal & I have decided to start Maddie's newest web page. She has a webpage that her aunt started for her at www.caringbridge.org/tn/madelynbeamon
As parents going through this there is a peace that comes from journaling and expressing our deep love for God, our kids and to you our listeners. Through the entries to come we will be sharing with you our thoughts, memories and many much deserved thank yous of past events along with our long road ahead.
PLEASE SIGN OUR GUESTBOOK as it gives us great comfort to know you are thinking of us and so that we may keep it for Madelyn's scrapbook!
We will be updating soon!
Love, Neal, Brandi, Tyler & Madelyn
The following is exactly what is at the top of our newly created web page. In case of future editing to our page you can always refer back to this first journal entry for "Overview!"
Welcome to our daughter's web page. This web page has been created to keep family & friends updated on the treatment of our precious daughter.
Thank you for your love & prayers as we give you a glimpse into our journey.
Madelyn turned 3 years old on December 17, 2004. She is receiving treatment at St Jude Children's Research Hospital in Memphis, TN for Neuroblastoma Stage IV. She started with 80umor cells in her bone marrow. The primary tumor was on her right adrenal gland next to the kidney. She has tumor on both legs, both arms, both eyes, spine, and pelvis bone.
OVERVIEW:
We began our journey with symptoms of leg pain in the left leg and a slight limp just after turning two.
She was diagnosed on January 29, 2004.
We started with our initial protocol of 6 rounds of 4 different chemos ie. Cyclo, Adriamycin, Etoposide & High dose Cisplatin/Etoposide. We had surgery after the second round on March 15, 04. They were able to remove 90 percent of the primary tumor along with the right adrenal gland. Test in June 04 showed still 20 percent in the bone marrow so we did another chemo called Topotecan.
Test in August 04 showed less than 5 percent in the marrow so we went to Bone Marrow Transplant (BMT). We were given 2 High Dose chemos ie Mephalan & Busulphan. She received her stem-cell transplant Sept 20, 04.
Sept. 29, 04 we were sent to ICU and put on a ventilator for 8 days due to mucoussitus, a complication from Mephalan.
Nov. 20, 04 Again, back in ICU on a ventalator for 9 days possibly due to more complications of BMT chemo and low T-cells. There was no sign of fungal, bacterial, or viral infection. A very sereal time but with the grace of God we made it through all of that to enjoy a BIG, 3rd Birthday Bash at the Target House!!
Click here to go back to the main page.
----End of History----
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