Amazing Gracie

Halloween and other fun

2012-01-29T10:41:00.000-08:00

Gracie was a ladybug for halloween! she looked so cute! she had a great time trick or treating.

we went to the church trunl or treat a couple days before halloween and it was a little cold that day, so she wanted to wear her warm butterfly costume from last year. Gracie at daisy scouts.

On the swing, when we went camping in October with friends. The weather was perfect and we had a great time!

more disney pics

2012-01-29T10:27:00.000-08:00

MAKE A WISH TRIP TO DISNEYWORLD!

2012-01-28T16:46:00.000-08:00

sorry the pictures are all out of order!!

We woke up at 415 and got Ready to go! We got to the airport at 510 and all
checked in by 540. The flight didn't leave til 715 so we had plenty of time. The
kids loved watching the planes. We hadn't flown in 5 years. (shad and brandon
went a couple years ago for hunting) The last time we flew all together was from
Watertown to salt lake for shaylas wedding and Christmas in 2006. Gracie was 5
months old. So this was her first time to remember it. She loved it and so did
Von. The flight went well and we arrived around 1215. After we got off the plane
there was a volunteer from Give kids the worlds with a sign that said Gracie.
She showed us the way to baggage claim and Avis car rental where they had
arranged a minivan for us and carseats. They gave us a map and told us how to
get to gktw. It was a 30 min drive from the airport and disneyworld is only 10
min from there:) when we got to gktw we were given a packet of info and told
where everything was. Gktw is a large area in and of itself with fun things for
kids. Games pony rides pools water fun movies etc. Plus free dining and ice
cream all day. U can even have it delivered to your villa. Our villa is really
nice. It is a 2 bedroom 2 bath with pull out sofa bed and rollaway bed. Kitchen
Lr and laundry room stocked with everything. We had some lunch and ice cream.
We unpacked and there was a note from mrs schaefer that she told me to put in
Gracie's suitcase since she had been telling Gracie to take her in her
suitcase. :) she said that way she really did come in her suitcase. Gracie
thought that was so funny. Mrs schaefer was pretty sneaky! Lol then we had the
kids take a little nap while Brandon went to the orientation. They were out like
a light within minutes despite their protesting beforehand of how "not tired"
they were! At orientation he got all the info and our attraction tickets. 3
days to Disney, 2 to universal studios, and 1 to sea world! She has a button to
wear showing that she is a wish kid and it gets her special things. We also got
a fast pass for the family to go to the front of the lines. Tuesday night we
spent at the pool and splash pad area. They were having a big splash bash BBQ
with games and cotton candy and snow cones. Shad got second place in the musical
hula hoops game. When u got out u got a bucket of cold water poured on your
head. Chloe got out toward the beginning. They all had a lot of fun. We went to
bed around 930 and woke up on wed at 730. We went over to the horse rides right
at 8 and the boys didn't want to but Chloe and Gracie did and loved it. They all
got a cowboy hat, although they only fit Gracie an Von. Lol . Then we had
breakfast and then rode the carousel at gktw. Then we headed to Disney at 9 for
a 10 o'clock appointment to meet the princesses. We thought we had enough time
since it is only 15 miles away but it was quite a process to get inside magic
Kingdom. We got there right at 10. Gracie loved seeing the princesses and giving
them a hug. They gave us a photo card that they scan and they have prof
photographers and they scan your card and u can get a cd of all the pictures of
your trip. Really neat. She met aurora, belle, and Cinderella at the first
place, and tinkerbell and vidia at another spot, and finally rapanzel at another
place. We were given a special pass that gets the whole gaily to the front of
the lines. That saved us an amazing amount of time. The place was crowded for
sure. We rode 5 rides in one hour. We rode a lot of rides, had lunch and dinner,
and then I took the girls tothe bibbidy bobbidy boutique for a makeover while
Brandon took the boys on another ride and then saved our seat for the parade.
They waited there for almost 2 hours, what good sports :) the girls LoVED the
makeover. They both chose to be belle and got a beautiful dress and their hair
and makeup and nails done. They will always remember it I am certain. It was
great. after that we watched the amazing parade and fireworks. That got over
around 930 and we didn't make it to the car til 11 because of how crowded it was
but we were glad we had stayed to watch. It was really cool. The kids did really
great for such a long day. we all finally got to bed at midnight and decided to
sleep in a little on Thursday. We woke up at 8 and I gave the kids baths and
then we went to breakfast and the carousel again at gktw. They also had some
Disney characters visiting to get pics taken with. The little ones especially
loved it. Von was so cute giving them all hugs! Except belle of course lol he
had no interest in seeing her. We headed out to universal studios at 1030. It
was much easier to get inside and much less crowded! Except the Harry potter
area! We rode some rides in the dr seuss area that were cute and fun. Then
headed to Harry potter area which was way crowded but really neat. The kids all
chose a wand at the wand store. We ate lunch there and all drank butterbeer in a
collectable mug. It was yummy. Then we rode some rides there and headed to the
Jurassic park area. After that we stopped by blahjhjkk for some treats. Then
rode the carosel and headed out. We decided to stop at the bathroom and Gracie
was running to catch up with Chloe and I and she tripped over some guys foot
and face planted it. I called to Brandon cause her nose was bleeding everywhere.
She got a big bruise on her knee and a knot on her forehead. She was mostly
concerned with gettin the blood off of everything, after she was cleaned up she
was back to happy. Brandon had mentioned the other day about her being pigeon
toed and she really is. I think we will have to do some physical therapy thanks
to All those months in a hospital bed : /we ate dinner at gktw and then went
swimming and shopping at the outlet mall. Friday we went to breakfast and
carosel at gktw again. Then we headed to epcot. The Nemo rides etc were pretty
fun. Then we went to Hollywood studios and had a lot of fun there. That night
They had a show called fantasmic and it was neat with lights and fire and water
and a lot of Disney characters and fireworks. We got back to gktw at 9 and
ordered pizza since we had an early dinner. Saturday we had breakfast and then
ice cream! The kids thought it was so cool that they let u get ice cream for
breakfast. After that we headed to the castle of miracles for Gracie to sign her
name on her very own star. Then the star fairy hung it up. Then we headed to
universal studios and had a lot of fun. They had a fun play area and also a
Barney show that the little ones loved. Try had a special meet and greet w
Barney for us and another little boy w make a wish after the show. We also saw
Dora and Diego. We went back to the Harry potter part and also dr suess area
that we liked the first time. Also jaws and Jurassic park and shrek 4D . That
night we went to a dinner show in Orlando called medieval times. We all really
enjoyed it. Sunday we woke up and ate breakfast and rode the carosel. Then we
headed to disneys animal kingdom. We rode a few rides and saw a couple live
shows. Te lion king and finding memo musical. The lion king was pretty cool but
none of us really cared for finding memo as a musical. It was kinda lame lol but
the costumes were good :) then we played at the Dino dig. We ate lunch in Asia
and it was really yummy. It was nice to have a different kind of food than the
norm.After lunch we were opening our fortune cookies and Gracie opened hers and
it said " you are brave and strong" when Brandon read it out loud I couldn't
believe it. It was too true :) the rest of us had lame fortunes but hers was
totally true! I was just looking at her and thinking that you'd never know what
she has been through just by looking at her. She looks so good and is doing so
good. we went on an African safari in Africa and it was pretty cool. We really
liked how we got to be so close to the giraffes. We came back to gktw for dinner
and one last swim and one last trip to the ice cream shop :) we had to buy two
new large suitcases to fit all the souvenirs and things we got. Good thing we
only came with 4 bags in the first place. Then we did laundry and packed
everything up so we could enjoy our last half day at sea world.

Gracie's Disneyworld send off party!

2012-01-28T16:36:00.000-08:00

Ben and Natalie, Gracie's wish helpers, put together a send off party before disneyworld, where they gave us all our tickets etc. We ate at cici's pizza and invited some friends to join us. Then while we were eating, Cinderella walked in! Gracie had no idea this was going to happen! It was such a fun surprise! We ate and had cake and opened some gifts from the make a wish foundation and also Ben and Natalie. Mrs. Shaefer, her kindergarten teacher, also brought her a gift. We had a great time, and especially Gracie!

Gracie and Cinderella

Gracie with Ben and Natalie

The whole family with Cinderella :)

Clinic

2011-10-05T16:30:00.000-07:00

Yesterday we woke up at 3:30 am and made the drive to Ft Worth for Gracie's 3 month clinic visit. We had missed the appointment a couple weeks ago, and this was the next they had. It was to do labs and review the scan results. We already knew the scan results since we had called them, but we went so they could see her, since it had been so long! They were all simply amazed at how great she looked! They said they would have never recognized her on the street! :) First thing, was the scale, and it said 16.4 kg! we have never seen a 16! that translates to 36.08 pounds!! She has gained almost 7 lbs in 4 months, and all on her own! She hasn't had any feeds since July. Her appetite is great and she is active and getting stronger every day. Then she got the poke for her labs and she didn't cry. She just said "I'm scared, I'm scared" The labs were all wonderful and normal. all the chemistries and everything. It had been too long to remember since seeing so many numbers in the middle of the paper where they should be! After Dr. Granger saw her, she asked if we wanted to take the g button out that day. I asked how do they do it, and she said they just pull it out. Gracie was nervous, and I kinda was too. But she did really well. Dr Scully, from surgery came over and pulled it out, and she screamed a little. Blood spurted out and food from her stomach, from the force, it was kinda shocking, then he put pressure on it. He said to not eat for an hour and the mucosal lining of the stomach would heal itself by then. amazing. He said to leave the bandage on for 3 days. She had had that button since last July! 15 months. She is truly a free woman now. It is a huge deal and we know we are so blessed. We thank God every day.
Next adventure--Disneyworld!!

the state fair

2011-10-05T16:19:00.000-07:00

Last week, a package came in the mail from Gracie's wish granters, Ben and Natalie. Inside was a cinderella doll and a Disney yahtzee Jr game. Also a card saying that they were so excited for her wish for Disneyworld, and they had sent these gifts to add to the excitement as we start the countdown!! She was so excited to get the package.

We went to the fair last Friday evening and had a ton of fun! Gracie rode the pony named "Magic" since her favorite "Chip" wasn't there. We played games and saw the animals and rode some rides. It was a lot tof fun!

Cotton candy at the fair!

My heart is full

2011-09-26T09:09:00.001-07:00

My heart has been so full this month with it being Childhood cancer awareness month to start with. Then 2 amazing events with the Taylor Swift concert and the curesearch walk. Both of which Gracie was well and strong to participate in. Also this last Sunday was Gracie's first primary program!! I've shed a lot of thankful and happy tears this month and say random prayers throughout the days of simply "thank you Lord" I remember last years feelings as I watched the other kids her age up on the stand, as I was holding my 27 lb fragile 4 year old. A year ago this month, she was doing her stem cell transplant. Next month holds more fun memories to come. The state fair! which Gracie LOVES and wasn't able to do last year. She loves to ride the ponies. The other kids spend their money on rides and games, and she wants to spend her money on pony rides. after that, we head to Disneyworld for her make a wish trip to meet the princesses! We can hardly wait. I can feel more tears coming on just thinking of it. We are so blessed and God is good. Thank you all for your prayers always. We feel your love.

Gracie singing along to her favorite Taylor Swift Song!

2011-09-26T09:03:00.000-07:00

Curesearch walk Sept 24 2011

2011-09-25T18:33:00.000-07:00

Gracie getting her medal
Watching the angel balloons

Gracie and Briley-ready to walk for a cure!

The angel balloons, for all the children lost to cancer.

Gracie and Briley waiting in line to go on stage for their champion medals.

Gracie and Danielle

Gracie's favorite nurse Andrea

The whole family after the walk!

My pictures ended up out of order, so here's my post in order :)

Briley's family drove 5 hours from Texas to be with us for the Curesearch walk. WE met them at Cook Children's back in January and have seen them at the clinic several times, and formed a friendship with their whole family. We thought it was so awesome that they drove all that way to be on Gracie's team! They could've easily formed their own team, since Briley has leukemia, but they came to support us and walk on our team. We passed out team Briley bracelets to our team to honor Briley as well. We will go down to Texas in April to walk with team Briley!! Their family arrived at 10 pm friday night and we stayed up talking until midnight. The kids had such a fun time together! They also have a little boy that is Von's age and those two were hilarious together! They acted like old friends and it seemed like they had the same ideas and thoughts at the same time. lol. We wish we lived closer and they all could play more often.

Saturday we woke up at 7 and got ready to go. We arrived at the walk at 8:45 with donuts and water and gatorade for the team. The opening ceremony started at 9 and they had the parents that had lost children to cancer, release balloons into the air for their angels. I got pretty emotional. There were just too many balloons. 1 would've been 1 too many. After that, they honored those currently fighting, and those in remission. They had each child go on stage and state their name and recieve their medal for being champions. :) Gracie told me on the way there that she wasn't going to say her own name, but she did it. It was precious and made my heart full. We had 34 people on our team and we are so grateful for all the support! This was the first curesearch walk in Tulsa, and they had hoped to raise $40,000 but they raised $96,000!!! so awesome! and 96 cents of every dollar goes to research.

The walk was 3 miles long and we pushed the little ones in strollers a lot of the time. It took us about an hour, and the weather was absolutely perfect. After the walk, we headed home and had a little barbeque with Briley's family. It was a lot of fun to visit and watch the kids have so much fun. They stayed until about 4 or 5 and made the trip back home.

Taylor Swift concert!

2011-09-24T18:31:00.001-07:00

Me and my sweetie.

TAYLOR SWIFT!

Gracie has loved Taylor Swift forever and her favorite song is "you belong with me." She has been able to sing every word since she was 3. I have a video of her singing it at 3 at Christmas, also a few videos of her singing it during the last 2 years, a couple of them, with a beautiful bald head. Well, when we heard Taylor Swift was coming to Tulsa, the girls were so excited! but the tickets sold out in less than 10 minutes. We have a friend of a friend that works for Cherokee casino and they have suite seats, so he was able to get 2 suite tickets for Gracie to be able to go! Then we bought 2 tickets on the floor for Chloe and Brandon to go as well. We figured it would be too overwhelming for Gracie to be on the floor, and we were right. The Suite seats were perfect!! they have comforatble seats and room to breathe! and also room to dance :) Gracie was beyond excited and loved every minute of it. the concert didn't get over until 11 pm and, the last half hour or so, she just snuggled on my lap cause she was tired. It was nice to have the comfy seat. We had a fabulous view! and Taylor even sang Gracie's favorite song!!

enjoying her chips and dip. She aslo had a soda in a "cool cup" and it was all free:)

Livin' the suite life

Gracie and Chloe waiting in line to get tshirts

On the way there!!

3 month follow up scans

2011-09-14T19:42:00.000-07:00

Gracie started Daisy scouts last week and she loved it! She keeps saying "scouts is fun!" She is so excited to go again this week!

Gracie's hair is growing so fast! and it is long enough for little pigtails again. She is looking so grown up. We drove down to Ft Worth yesterday and left at 5 am. got there at 10 and checked in. They had her start with the gatorade drink that has the contrast in it. she is supposed to drink it a little at a time for 2 hours. This is where the G button comes in very very handy! I just hook er up to the tube and she doesnt even have to drink any of it. :) then they were running late, so they didn't call her back til 1:45 and then they did an IV for the IV contrast, which I had forgotten about since every other time, she had a port or central line. She was not happy about it at all but she held still through the tears. Once that was done, we waited another 1/2 hour and then it was finally her turn. She held real still for the CT and it was very quick. After it was done, she got the IV out and we went to eat. It was about 3:00 and we were starving. I never eat when she can't eat. She wanted one of everything it seemed. we got, pizza, turkey, loaded baked potato, doritos and candy bars to share. Aftere that we went to the Build-a-bear at the hspital. Cook Children's is the first hospital to get one and it is great. I was just going to let her get an animal without an outfit, but that was before the IV i didn't know about. :) lol so she got a much deserved dress to go on her new bunny, named "bunny" haha. We stopped back by radiology to get a copy of the scan and then headed home. We got home around 8:45. I gave the Cd to Brandon to look at and he said he didn't see anything as far as he could tell, and there wasn't a report yet. So today I called and asked if the report was done and it was. The results? NO evidence of disease!! We are so very blessed that She remains disease free and she is healthy and strong. Most days she doesn't even need tylenol. Thank you all for your continued prayers. We love and appreciate you so much! We will go down for clinic on Monday, so glad we don't have to wait til then for the results. She will just have labs and visit with the doctor.

"let us know what we can do to help"

2011-09-07T07:54:00.000-07:00

1 in 5 children with cancer, will lose the battle. this number is even higher for Neuroblastoma. although it is only the 5th most common childhood cancer, it is responsible for the most deaths.
I hate how statistics like this constantly try and enter my mind! it is important for everyone to know this! but I already know and hate the constant reminders and worry. If it was your child, what would you do? Pretend for even a moment, if you can. This is not meant as a guilt trip. Please help us raise money to support childhood cancer research, if you can, even a few dollars, every bit helps. truly we all can make a difference together. http://www.curesearchwalk.org/tulsa/amazinggracie
September is Childhood cancer awareness month.
Next week, Gracie will have her 3 month follow up scans. This enters my mind several times a day, and I ask for your prayers that the scans will remain clear!

Lisa Bloxham (1)

2011-08-29T08:31:00.000-07:00

Hey guys! Please help our team AMAZING GRACIE raise money for the CureSearch walk. The walk is Sep 24th. DOnations go to help find a cure for childhood cancer. Help us EXCEED our fundraising goal! Come on guys, a little bit goes further than you know:) Click on the link and it will take you straight to our team page where YOU can donate! It is also where you can sign up to walk with us! $10 for adults and free for kids! Thanks so much! :)
http://www.curesearchwalk.org/tulsa/amazinggracie

Kindergarten!!

2011-08-26T06:37:00.000-07:00

I met with the principal last week to discuss Gracie and her needs and she was super nice and said they will help in any way she needs. I have a letter from Dr Granger stating her condition and her diabetes insipidus. So it basically just says that Gracie needs to be able to get a drink, use the bathroom, get pain medicine, and take a rest at any time she needs. The principal gave the letter to all the teachers Gracie has with home room, art, PE, and music, so they are all aware and informed. Gracie brought a blanket and pillow to leave at school in the nurses office if she needs a rest. Yesterday was Gracie's first day of Kindergarten! She was excited to go and she packed her lunch and went to wait for the bus with Chloe. Im glad they are at the same school.

Getting on the bus!! :) We are blessed to have the bus-stop be our house! Gracie had a pretty good first day. She told me she cried 2 times, once when her pants were too tight and the nurse came and put some ointment on her hip, then she cried at recess when she couldn't find her teacher, Mrs Schaefer. Mrs. Schaefer has been really sweet to us since hearing about Gracie last year. So we were beyond excited that she got her for a teacher! I talked with her on the phone later and she told me the same thing Gracie had, and that she did well the rest of the time! I was so glad and relieved to hear she had a good day. She seemed so much bigger to me when she got home and was telling me all about her day. WE are SO proud of her. Kindergarten is such a big milestone for anyone, but especially for her! We feel so blessed.

Von was so excited to see the girls when they got off the bus. He isn't sure he likes being the only one home.

This is Gracie today on her 2nd day of school. Excited and ready to go back!! :)

Gracie's 5th Birthday

2011-08-06T21:38:00.000-07:00

Here is a picture of Gracie the day she was born.

Here is my princess 5 years later on her 5th birthday! Gracie wanted a Cinderella party and she chose this princess cake from Walmart. it was so cute and she loved it. It was sure easier on me too, not having to make it. :)

Gracie had some friends over for a party. It was her first time inviting friends over. Last year she wanted to, but in the end, she wan't feeling up to it. It was less than 2 weeks after her major surgery. I remember thinking last year that it might be her last birthday...How blessed and grateful we feel to have her so healthy and strong a year later!! I arranged a party through mylilprincessparty.com and the lady comes dressed as a princess and does all the games and activities. The kids had a ton of fun and each got their picture with Cinderella.

My little Cinderella. We love you Gracie!!

International Neuroblastoma Awareness Week

2011-07-20T16:13:00.000-07:00

This week is International Neuroblastoma Awareness week. It is also Gracie's 5th birthday July 25th. I cannot think of a better gift than to donate your lunch money for one day, toward research for a cure!! even a dollar adds up if enough people do it!

you can donate in the following ways:
*Online at www.lunchforacure.org by credit card, debit card or electronic check. on the site, you can find gracie's tree and add an ornament for every 5 dollars donated. just put Gracie's name on the donation page.
•By calling 1-877-883-7464.
•By sending a check or money order to:
•The Neuroblastoma Foundation
•3704 Hamilton Ave
•Fort Worth, TX 76107

the Neuroblastoma Foundation is a 501(c)(3) public charity. Their donations are tax-deductible to the full extent of the law. Then provide them with the Neuroblastoma Foundation tax ID number: 26-4373250.
Who do you know that might give up a lunch for kids with neuroblastoma? Please forward this to them :)
thank you and we love you!

What is Neuroblastoma?
Neuroblastoma is a solid tumor cancer that arises in immature nerve cells and strikes primarily infants and children. It is the most common cancer affecting infants with an incidence rate of almost double that of leukemia. Its cause is unknown. Nearly 70 percent of children diagnosed with Neuroblastoma have advanced-stage disease. Less than 40 percent of children with advanced disease live five years.

Neuroblastoma is a solid tumor-a lump or mass-originating from neural crest tissue that is part of the sympathetic nervous system (SNS). This part of the nervous system is responsible for the "fight or flight" response when stress occurs. Nerves of the sympathetic nervous system run parallel along the outside of the spinal column and connect to organs. Since neuroblastoma arises at the interface between the nervous system and the endocrine system (the hormone producing organs-it is one of the few cancers that secrete hormones), it is also included in the class of neuroendocrine tumors.

The most common place for neuroblastoma to originate is on the adrenal glands located above each kidney (40 percent of localized tumors and 60 percent of wide-spread disease). Neuroblastoma tumors can also develop in nerve tissues in the neck (1 percent), chest (19 percent), abdomen (30 percent non-adrenal), or pelvis (1 percent)-anywhere along the chain of the sympathetic nervous system. In rare cases, no primary tumor can be discerned.

"Neuro-" indicates origin in nerve cells, and "blast" means immature cells. Normal "neuroblasts" (baby nerve cells) begin in embryonic tissue and grow and mature into functioning nerve cells. Neuroblastoma means the immature cells reproduce forming a mass and do not develop into functioning cells (the "-oma" ending denotes a tumor). Neuroblastoma is not a cancer of the central nervous system (CNS) and it is not a brain cancer, but occasionally it metastasizes to the CNS. There are over 50 kinds of pediatric cancers that fall into 12 main categories, one of which is the sympathetic nervous system cancers. Neuroblastoma accounts for more than 97 percent of all sympathetic nervous system cancers.

Neuroblastoma is a very rare cancer
Of approximately 13,000 new cases of childhood cancer in the U.S. each year, only about 650-700 are neuroblastoma. There is similar incidence in other countries and no clear differences between ethnic groups. About 55 percent of all neuroblastoma patients are boys.

Understanding that neuroblastoma is a rare disease is important. Many pediatric oncologists see few neuroblastoma patients. You are entitled to ask how many neuroblastoma patients your hospital treats, to consult with pediatric oncologists and surgeons who specialize in neuroblastoma, and to get all your questions and concerns answered to your satisfaction.

Neuroblastoma is a pediatric cancer
Neuroblastoma generally develops in young children. The median age at diagnosis is about 2 years old. Numerous children are diagnosed after age 2, but the number of diagnoses decreases as age increases. Adult diagnoses of neuroblastoma are extremely rare but not unheard of.

The cause of Neuroblastoma is unknown
Although the cause of neuroblastoma is unknown, most physicians believe it is an accidental cell growth that occurs during normal development of the sympathetic nervous system.

family vacation

2011-07-17T20:05:00.000-07:00

Gracie has been eating well (for her) these last couple weeks. Her weight is not up nor down but holding steady. :) She likes to eat a lot of cereal, cottage cheese, refried beans, yogurt, pudding and mac n cheese.
We just got back from a 2 week vacation to Idaho, Yellowstone, and Moab. Gracie did really well and was playing like a regular kid. It was wonderful.
Gracie hiked some of the way to delicate arch. it is a mile and a half each way, so obviously that was out of the question to have her do! and who wants her burning that many calories anyway!! haha. Brandon carried her most of the way up. I carried Von some of the way up and Brandon would take Gracie up a ways and then come down and pack Von up. back and forth cause I was a wimp. lol then he carried Von down and I carried Gracie. She was much easier to carry than Von! that 5 less lbs made a huge difference.
Gracie at sand dune arch. The kids loved this arch for all the cold sand. we were lucky to be there when the weather wasnt too hot like it usually is in July. we did the hike to delicate arch and just got done with sand dune arch when it started to rain. we went swimming at the Rv place and then dinner and shopping! We had a great time visiting a lot of our family and I was pretty emotional talking with them about her. It is so good to be at this place in treatment. the end!! We were able to have such a wonderful trip with a new outlook on life. the kids all did awesome and we all enjoyed every bit of it.
a funny/cute thing I wanted to add. Gracie and Chloe have been playing with their toys and Gracie will tell Chloe to be the DR and she takes her toys to her and says they have cancer. She tells DR Chloe what needs done, surgery etc. then Chloe said "OK the cancer is all gone!!" Gracie said "are you sure? you better do a donut scan" (donut scan is what she calls the CT scan cause it looks like a big donut) well, Dr Chloe did the donut scan and all was clear! :)

Cancer free

2011-06-27T19:17:00.000-07:00

Results of CT scan = clear!!!
Results of MIBG scan = clear!!!
Results of bone marrow= clear!!!
No evidence of disease!! Gracie is cancer free. I got a call from the nurse on Friday as we were heading out to go camping. She told me the results and we were So happy and relieved. I hung up the phone and sobbed. Thank the good Lord for blessing Gracie and all of our family. A huge weight has been lifted. We had a wonderful weekend camping. Gracie would give me hugs and say " that's because so happy that my cancer is gone" she melts my heart. We cannot even express how happy we are!
Today we drove back down for scan review with Dr Granger. She said the happiness on our faces is why she is able to do her job. Because she knows what is possible. I have to admit there are a few times I seriously doubted her when she told me it would/could get better. then They paged the surgeon to come over to clinic to pull her central line out. She was scared but she held real still and it went very quick. She is so happy to be free of the lines and having dressing changes. It has been 10 months with the line in. 4 with the first one and 6 with this one.
So, where so we go from here? She will continue with milk feeds to supplement her appetite, and gain weight and strength! She will have scans every 3 months (CT and bone scan) for the first year. After that, it will be every 6 months for 2 more years, and blood work and EKG/echo for another 2 years, providing she doesn't relapse.,heaven forbid. So she will be followed for another 5 years, until she is almost 10!
We want to thank you all SO much for all the love and support, kind words and prayers!!! We couldn't have made it through without you, and of course the love and comfort of our Savior and heavenly Father. We are so blessed!!!

Follow up scans

2011-06-23T17:37:00.000-07:00

Sunday night I took all the kids down to Ft worth to stay in a motel. The mcdonald house only allows 4 people to a room, and we had 5 so we had to get a motel. We found one with a pool so that was a fun thing. WE stayed 4 nights and came home today. Monday her appt was bright and early at 745. she had labs and then they did a cortisol level check and drew levels at 30 min and 60 minutes to see how her body is doing with it. Then I took the other 3 to a drop in day care in Arlington, which is a nicer area. they had a lot of fun and were there 6 hours! it was a good thing i took them there. We went at noon for her EGD and bone marrow biopsies/aspirates. we waited til 245 before they finally got to her. the procedures were done with at 4 and we waited around for another hour and she ate 2 packs of teddy grahams. :) she did great so they let us go. She wanted to go to olive garden so we did. she actually ate quite a bit of salad and alfredo. When we first got there, they took us to a table, and I asked if they had a booth but they said they couldn't do a highchair at a booth because it was a fire hazard. first time I had ever heard that. I cant even count how many restaraunts we have done that at. anyway, I said we would have to go somewhere else, because Gracie needed a soft seat and Von needed a high chair so he would stay put. :) She didnt offer any other options. so we were leaving and the manager said he had a table with soft seats and room for a high chair. i was a little annoyed with the first gal after such a long day, and her attitude about it. i doubt I am the first person needing something like that. they should know the options in my opinion. lol
the next day she had a hearing evaluation and she did really well. she hasnt had any change since last year. she has some hearing loss in high frequency but nothing that needs a hearing aid at this point. We are grateful to learn that the transplant didnt make it any worse than the previous chemo.

Wednesday she had a CT scan and the MIBG injection. then we went to Mcdonalds and Gracie lost her 1st tooth eating chicken nuggets! she got a little freaked out at first, then started laughing. She said it hurt to eat after that, so we got her a vanilla milkshake.

today was the MIBG scan, which shows 90% accuracy if there are any tumors. if there are tumors, they light up. we will get these results next monday. She has to lay still for 70 minutes and she always does so awesome. she fell asleep the last half hour. after that was done, we were able to hit the road and head home. The ride home, we stopped evry couple hours for lortab or ibuprofen, since those bone marrows sights were still very sore. other than that, it was great and we made it home is the usual amount of time. We go back down to clinic on Monday to review all of the test results with the Dr.

2011-06-12T18:11:00.000-07:00

Gracie is doing well and her appetite is slowly improving. She still doesn't eat anywhere near enough calories on her own, so we continue with the milk feeds to supplement. Tonight is her last night of TPN and she will get the central line out in 2 weeks. :) She is happy and getting stronger. She loves to play with the other kids and feel like a normal kid. she also loves to sing and dance to Taylor Swift and Michael Jackson. We are going to go to the Taylor Swift concert in September, we hope to find a way for her to meet her. we will see. I didn;t end up doing the lemonade stand yesterday, but hopefully soon. Thank you all for always praying and loving our girl. xoxox

2011-06-03T13:38:00.000-07:00

Next weekend we are doing a lemonade stand to raise money for childhood cancer. check it out. http://www.alexslemonade.org/mypage/72583
So, once again, it has been a long time since I have updated the blog. We have been having a good time trying to create a new normal. It is nice to not have to be anywhere very often. Gracie is still on TPN for 12 hours every night for weight gain. She weighs 31.5 lbs now and is looking good. :) She is getting stronger and trying to be a regular kid. She is happy except when she's hurting and her appetite is hit and miss but she is improving. We have been going to the clinic in town for her labs once a week, and then they ship 7 days at a time of TPN. She will go down to FT worth MOnday for clinic there and then start her last 2 weeks of accutane!after that 2 weeks, she will have her scans.

loving home

2011-05-10T17:44:00.000-07:00

We are loving being home! Time goes so much faster at home though! I guess they say time flies when you're having fun. We have been having fun just chilling out at home. The weekend was a little rough as far as pain goes but she seemed a bit better today. Yesterday we drove down to ft worth for clinic and I took all 4 kids. her appt was at 130 and we saw the doc around 3. They said some of her blood chemistries were a little high and they didnt want to do the TPN that night and give her saline in clinic. we got out of there around 5 after a saline bolus of 250, we finally made it back home at 1045. I had just had 6 days of TPN delivered but they said based on her chemistries, that the formula needed changed. So they delivered 3 days to me today and we will recheck her blood here in tulsa on thursday and order 3 more days and retest monday.
Gracie started her 2 weeks of accutane last night and then we will have 2 weeks off before starting the last 2 weeks. they want me to drive back down for labs before the next round of accutane but i really dont want to. I will try to see if they will let me do it here. it feels great to know we are done with treatments. it will be super great to be done with accutane and scans too. :) just in time to enjoy our summer! we feel very blessed.

Wow

2011-05-06T21:33:00.000-07:00

WOW!!! Gracie is done with scheduled hospital visits! So surreal. this round went so well, she saved the best for last. each day was better than the one before and by the last day, she didn't puke OR need extra pain medicine (besides the continuous) We got out of the hospital this morning by 10, earliest time yet. We were on the road and pulled into the driveway just after 3. it is so good to be home. I did a lot of crying late last night after the enormity of it all finally hit me. it is hard to even process the idea that she is done with treatments (besides accutane) we feel so incredibly blessed! What a roller coaster of the last 14 months. I know it's not all suddenly wonderful but it sure is great to have come so far. she really is doing the best she has in a very long time. we are continuing wi TPN at nights for a while. I think part of the reason this round went so well, was those extra pounds she had gained. Hopefully she can gain another 5 plus. :) we thank you so much for your support and love and prayers and ask u to please continue your prayers that she will continue to improve and gain her appetite back, so she can be stronger and get off the g button feeds and TPN.

Round 5!

2011-05-02T18:53:00.000-07:00

Ok, I'm sorry for slacking on the blog the last 3 weeks!! I meant to update it on several occasions but I am a huge procrastinator!! let me start off by saying we had a GreAt 3 weeks off! Gracie was happy and active much of the time. she had TPN through the central line every night by yours truly. Chloe was my little assistant with getting me all the tubes etc. she says she wants to be a doctor. sometimes Gracie says she wants to be a nurse but usually she says she just wants to be a mom and cook fer her children. She's so cute. one day I asked her if she was going to have boys or girls. She said " how do I know!?" lol I said sometimes we can adopt children and say if we want a boy or a girl. She seemed ok with that. It's just a start to future conversations...it's enough for now..
we were so blessed to have Easter at home again. Gracie has been able to be home for every holiday since diagnosis, which is pretty huge considering all the setbacks she had. There are so many kids that spend the holidays in the hospital and we definitely recognize this. we had a great Easter. I will post pics when I get back home.
we got to Ft worth last night and started round 5 this morning which is the ch14.18 and GMCSF shots. The nurse called in another nurse to hold Gracie still for the shot. How quickly they forget she is a rockstar!!! I said it wasn't necessary and she would hold still, and of course she did. :) the Day went pretty well. She started having pain around 1 o'clock as usual and got the nurse boluses of fentenyl about every 2 hours after that for a total of 4 times. She also puked once but other than that she was fairly happy and had a good day. the ch14.18 ran at 10 ml/hr for 10 hours, so now she can hopefully have a restful night. We have 3 more days and go home Friday!!! this is the last hospital course!!!!! We can hardly believe it!!! After this she has 2 weeks of accutane at home and then 2 more weeks off and 2 last weeks of accutane at home. we will then come back for all the follow up scans etc at the end of June. we will leave her central line in until the scans and continue with TPN till then. she gained 4 lbs on the TPN these last 3 weeks and her little legs are starting to look like legs again. :) she is gaining strength as well. Thank you so much for your prayers. Please pray for her appetite to return so that she will be able to start Kindergaten in the fall!!!! Xoxoxo

spring pictures

2011-04-11T21:40:00.000-07:00

clinic

2011-04-11T20:56:00.000-07:00

We woke up at 6 and headed to ft worth for clinic. We arrived at 11:20 for our 11:45 appt. Her counts were ok and we were out of there at 1:30. not too bad. Brandon made it over after work around 12:30 so we went to lunch together. We also saw Briley there and she was getting chemo. she had about 15 minutes left when we got there, but Gracie was a bit on the grumpy side so they didnt play. Briley gave Gracie a pink and black tutu and they let me take their picture. adorable sweeties. we made it home around 7 and then the home health nurse came by at 8:30 to show me how to mix the TPN and hook it up. She will start it tonight, 12 hours every night. they will check her labs here in town on Thursday to see what needs to be adjusted, if anything, and order 4 days at a time. hopefully in the next few weeks, she can get a little ahead on her nutrition. we are so excited for 3 weeks at home. :) tonight also starting 2 weeks of accutane. blah

Home again!

2011-04-10T20:19:00.001-07:00

Thursday afternoon, her arm started swelling up from the IV and hurting a lot. it was red and puffy and she was screaming from the pain saying "I can't take it!" it was cute and sad at the same time. They stopped the antibiotics and took the IV out. all of her blood cultures were negative anyway, so she didnt really even need them at that point. She was so glad to get it out. Thursday and friday went ok as far as pain but she still had some puking. Friday we left around 3 and headed home. It was soo good to get back home after 2 weeks. Von just hugged me so tight and cried and cried for about 10 minutes. poor kiddo. He hasn't wanted me to leave his sight, until just today. Tomorrow we will drive back down for clinic and then we will start her 2 weeks of accutane and also some TPN at night at home, along with the milk feeds. They also want to try adding a tsp of canola oil before the feeds to give her extra calories. we will see if she tolerates it. all in all it was a much better round than the 2 weeks of round 2, so we are grateful for that! also grateful she only has one more week in the hospital for round 5. the end is finally in sight and Gracie is happy and doing ok. please continue for her to gain weight and strength! xoxo

Round 4 week 2

2011-04-06T12:50:00.000-07:00

Let me start by saying we had a Wonderful weekend!!!! I hadn't seen Gracie so happy and giggly in a very long time. She did very well and we had fun playing in the playroom at the McDonald house, and out on the playground (until she saw the ants!! Lol) we went and got a pedicure and bought some things at target.
The home health didn't deliver the TPN until 10 pm Friday night, and didn't send a nurse. I calledthem and there was a miscommunication sonewhere along and they said they'd send one. They finally came at 11 pm and got it all hooked up. They came the next day at 2 just to get it ready and then I hooked her up at bedtime. She did very well all weekend and didn't puke or anything. She even ate 6 bites of lasagne! Also a couple animal crackers and a few bites of oatmeal :)
Saturday we went to the neuroblastoma walk and got our tshirts and then she said she was ready to go. She was just too tired from being up late the night before.
Sunday night we checked back into the hospital for week 2, Brandon arrived shortly thereafter and we were so happy to see him! Monday they started the IL-2 at 9 am and the ch14.18 and pain pump at 11am. They decided to keep the ch14.18 at 5 for 20 hours a day instead of going up to 10 for 10 hours. She has always run into issues in the past and had to go back to 5 anyway. She did well until about 4 hours in as usual and started having a lot if tummy pain. I was confused because last time she did really well on the fentanyl so I kept asking if it was the same rate and they finally figured out late that night that it was at 5 last time and only at 1.3 this time, they increased it to 3 for an hour and then up to 5. She still needed quite a bit more on top of that so the next night it was increased to 7. Since then she ha done much better as far as pain goes.
Last night she spiked a fever and had to get an IV in her arm. She was not happy about it but she held still like the champ she is and once again impressed everyone!! Her broviac has two lines but she has the IL-2 in one and the ch14.18 in the other, so the IV was needed for antibiotics since they aren't compatible with either one.

Week one is done! (round 4)

2011-04-01T12:25:00.000-07:00

Wednesday night was a very loooong night. She spiked a fever of 103 and she woke a lot and puked three times even with feeds at 30. We left the feeds off all day and night Thursday and she still puked a couple times. Good thing she at least had the TPN. She gained one lb this week :) last night she woke a few times but it was much better. We headed over to the McDonald house around 1 and the parking lot was nearly full which is rare. I am supposed to call int he morning to make sure they have room but I forgot. Well, we luck out and got the very last room!! Thank goodness. Gracie got a build a bear that someone had donated, so we went and chose an outfit with the ten buck coupon. :) home health is bringing the TPN this evening and show me how to do it. I will try the milk as well tonight.

Day 2/3

2011-03-30T08:55:00.000-07:00

Well we tried going to 70 on the feeds Monday night but she puked. We turned them down to 40 and she still puked, so we turned them off altogether until Tuesday morning. Tuesday she only puked once and it was when she was needing her DDAVP and drinking a lot. That seems to be when it happens a lot of the time. They also started her on TPN last night and I kept the feeds at 30 overnight and she did rely well with no puking ;) she did wake a lot and need to pee and was uncomfortable. She got some lortab this morning and is happy and chatty. We will keep the feeds at 60 in the day and 30 at night along with the TPN. We will discharged Friday morning and go to the MCDonald house for two nights and be admitted for week 2 on Sunday. Theu are going to send some TPN with me for the weekend also. Friday we plan to do something fun like a pedi or a movie. Saturday there is a neuroblastoma walk that we will go to for the fun stuff, face painting, games and food! I had heard about the walk a few months ago but didn't plan on being there so I forgot all about it. Now with the change in schedule, it turns out we were down here for it after all. This is the 4th year they are doing it and all proceeds go to Cook Childrens hospital.
Cooks also just opened a build a bear in the hospital. It is the very first build a bear in a hospital setting and they have medical related themed outfits as well as regular ones and the prices are the same as other build a bears. All proceeds go to the hospital and every time we are admitted she gets a ten dollar coupon. So next week she will get another one nd be at 20 bucks off already. She is looking forward to it!

Round 4 day 1

2011-03-28T21:19:00.000-07:00

We got here last night at 8:45 and get all checked in and settled into bed. She finished up her accutane last night and also her last dose of hydrocortisone that she had been weaning off of the last 6 weeks. She did well all night with the feeds at 60. They started the IL-2 at 9 this morning and it will run for 96 hours. She did great all day with everything. She only needed lortab once this evening and she has been resting and sleeping well and pretty happy. :) I'm glad the first week is the "easy" week because next week, Brandon will be able to come after work since he will be working in Dallas. I had a really hard time with round 2s second week and it gives me comfort to know he will be around some of the time. Gracie Hasn't been gaining weight even though she has been tolerating her feeds at 60, we are trying them at 70 tonight and hopefully she will do well with it and we can increase more soon. They are testing for malabsorption although they don't really think that's the issue, we will see. They will give TPN through the IV for a few days, in addition to the milk feeds to see if we can get some leeway. Thank you for your prayer as always! Xoxo

its been a while.

2011-03-26T21:06:00.000-07:00

Its been a while since I've written anything so I apologize. It all goes back to my 'no news is good news(usually ;))'

Anyway, after we got home 2 weeks ago, Gracie was still very weak and puking. it took a few days to get over the puking but she did and the feeds have been going pretty well. I have been running them about 20 hours a day at 50 or 60 ml per hour. She only puked once this week and I thought maybe she would gain some but she hasn't. she has even lost 1/2 lb. :( I think it is because she burns alot of calories crying from pain or laughing when she feels ok. She had a few days where she could hardly walk but the last 4-5 days she has done well with everything and is even starting to eat small amounts. :) but then we will start all over with the next round and be back in the same boat... We will drive down tomorrow to be admitted and start Monday with the IL-2 that runs continuously for 96 hours. She did very well with this in round 2 so we are hoping for the same. the second week she will have the IL-2 for 96 hours again and the ch14.18 together, this was the week that was hardest on her with round 2, (and all the rounds so far) We are praying that with the charnge to fentanyl, that will help. hopefully she won't have the same issues with blood pressures. This will be our last 2 week hospital course and then the next course will be one week in May. after that she will have only accutane at home, and finish with the immunotherapy stage mid June. It is coming quickly and we feel very blessed to be nearing the end of treatment. Please as always, keep Gracie in your prayers that she can gain weight and strength! God bless you

round 3 antibodies

2011-03-13T16:39:00.000-07:00

They started the ch14.18 at 9:15 m and we went to the playroom to take advantage of the time she was feeling well. The doctor came and saw her around 12:30 and said she looks great and I said yeah but the other times, the pain has started at 1. Sure enough, 1:00 rolled around, and here comes the massive headache! She was on the morphine pump just like the other times, and Brandon had told me that people get headaches from morphine, so I asked if we could try a different pain med and they didnt think it was the morphine causing the headache, since headaches are also a side effect of the antibody. They said to finish out the day on the morphine and then Tuesday they started her on fentanyl. Tuesday went a little better. that night she started puking almost every hour. Wednesday she kept on puking so I thought maybe its the fentanyl, but they said it probably wasnt. I was a little frustrated and called Brandon. The minute I heard his voice I started crying, which wasnt a good thing to do because that makes him think something awful has happened, not just my crazy emotions! The night was a little better as far as puking goes, which made me think, it was just the antibody, since it was done and the fentanyl was still running. They just gave her ativan and zofran scheduled around the clock, and that seemed to help. Thursday went the best and we were able to leave Friday at noon.

She was pretty grouchy all week and not feeling well, so the pics I got were of her sleeping :)

On the way home there was a lot of smoke, and traffic was at a standstill. I guess there were alot of grass fires from the dry hot air and the wind.

Saturday we went to chuck e cheese's and it was a lot of fun. Her hair is growing back very quickly Tomorrow we will drive back down for her clinic appointment. She will also start her accutane tomorrow as well. She is not looking forward to that because it makes her so itchy and grouchy.

Please pray for her to gain weight and not puke!!! also her joints hurt a whole lot. thank you.

One year

2011-03-04T15:35:00.000-08:00

This picture is from March 4 2010, the day we found her tumor.

Yesterday was a long day. we woke up at 3 am and headed to Ft worth for clinic. I brought all the kids with me. We got there just in time for her 8:30 appt. They drew her blood and we saw the Dr. and talked about the upcoming admission for Sunday. we were done by 11 but had to wait around for her GMCSF shots. nobody had ordered them, so they were trying to figure out if they could get them delivered to the clinic or if they could ship them to our house overnight. I guess there was a lot of miscommunication with everyone, and they finally told us at 2:30 that we could head home and the shots would be delivered overnight. we had been there for 6 long hours. about half way through I was a little annoyed it was taking so long but then I had the thought "be grateful" and I said a prayer of thanksgiving that all the kids were happy. It made me realize that it could have definitely been worse. they were all tired the same as I was, although they slept a little on the 5 hour drive, it wasn't too much. Von could've been crying and grumpy but he wasn't. even Gracie was fairly happy because they had a lot of crafts. that also kept Chloe occupied since they both love crafts. Von was in heaven with all the toys and cars to play with and played the entire 6 hours, only stopping for an occasional snack. and Shad of course played video games the whole time. I was very tired on the drive home being the only one without any rest. the last 2 hours of the drive were the hardest and I had to crank up the music and sing along to stay awake. We made it home right at 8 pm.
Gracie had a kinda rough night with pain and woke up a lot. I was staggering around getting her things cause i was so tired :) then she puked at 6 am. I thought it was appropriate considering today is the 1 year anniversary since we found the tumor...
I woke up Shad and Chloe and told them to get ready, then i went back to sleep. I woke up at 9:30 when Gracie woke up, then I went upstairs, and Von was just waking up as well. I felt a little better after the extra few hours of sleep. The shots were delivered at 10 and she got her first injection. she will have the shots for 14 days to increase her white count. We also ran the milk feeds continuously today and it went ok. Von stayed away from the pole and cords so maybe he is learning. (Hopefully)
I have been very emotional today. Feelings of all sorts keep entering my heart, some good and some bad. I thought about venting how it has been a year of a bunch of crap and I could just hear peoples comments saying to be grateful she is at least still here, etc. Of course I know these things and am so grateful and blessed. I was hoping to be able to just concentrate on the blessings today, but when the day actually came, it was just overwhelming. nobody can tell me how to feel or what I should do this day.
Brandon sent two bouquets of flowers to Gracie and me and of course I cried . Gracie's face lit up and she has kept asking to hold them. She also chose where we should go eat tonight, although I am sure she wont eat anything. My sister is flying in tonight to stay with the kids while we are in Texas for round 3. I'm so grateful for her and to her husband for sacrificing her being gone for almost two weeks. we have such amazing family who have all been so incredible this year! Also we are overwhelmed by the generosity and faith and prayers of friends and total strangers. We wouldn't have gotten through this year without all of you! but mostly we thank God for giving us Gracie as our child and that we are so blessed to have her in our family. She truly is so amazing and strong and teaches us so much every day. What a ride this roller coaster has been and will continue to be. thank you for your continued faith and prayers, we know God hears and answers them!! God bless you

a few more days off.

2011-03-02T11:19:00.000-08:00

Gracie was so excited that her hair is long enough to hold a bow! it is growing in wavy again so she is happy that it will have curls again. its kinda hard to tame at this length but we will take what we can get! :)

we spent the night at a hotel while Brandon was working and Gracie and Von just sat on the side and put their feet in. they were happy with that and of course so was I. especially since I forgot my swimsuit and didnt want Von to go in. :)

Sweet girl.

Gracie got a wrap thing to keep her cords out of her diaper area. but it is so itchy with her itchy skin. it was a nice idea anyway, lol. we have just been taping the cords up out of the way and it works well.

Gracie is still in a lot of pain a lot of the time. She also eats little to none. She still weighs 27 lbs and we pray she will eat and gain some weight. all we have is the milk feeds at night and boluses in the day. i would like to keep it running continuously all day but baby brother messes with the cords and we dont want him tugging on her button, that has already happened once and it was very painful and scared her alot ( and me)

Today i took the two little ones to walmart and I had a pillow for Gracie to sit on in the cart, when it came time to pay she had to get off the pillow so they could scan it. she started whining cause her bum is so bony and the cashier said " oh you are gonna start crying now? it must be naptime" I said, "no its called chronic pain." some people should just keep their mouths shut.
anyway, tomorrow we go down for clinic and then back home til Sunday when she will be admitted for course 3 of antibodies. We are having another special day of fasting and prayer on Sunday for Gracie. if you would like to join us. We pray her pain will get better and her appetite and weight will increase. thank you!! xoxo

one week already come and gone

2011-02-19T13:43:00.000-08:00

I cannot believe we have already been home for a week! I wish time went this fast at the hospital!! :) I took Gracie and Chloe for a pedicure yesterday and they loved it. Gracie has been wearing her sunglasses everywhere because her eyes are still dilated from the ch14.18! her eyes are very sensitive because of it, obviously. I was hoping it would be better by now, and it worries me a little. I'm hoping she won't have any permanent eye problems from this, she still has 3 more rounds of the ch14.18..

The second round of accutane has also been harder on her as well. Her skin is soooo dry and sore. It is weird cause even her eyelids are peeling. I bought several moisturizers and lotions that others have recommended to me and I think the main part is just being very diligent about applying it several times a day. She has been very moody but I don't know if it is from the accutane or just the chronic pain she has.

I ask that you will please pray for her pain and other issues. thank you so much! I am so grateful for the Internet and the ability to have have so many read these posts and know what she needs them to pray for specifically. :) God bless you all. We are so grateful for you.

I ask that you also pray for Gracie's friend Briley this weekend especially. Monday she will have another spinal tap and bone marrow aspirate. It will also be her last day on steroids. They will be injecting more chemo into her spine and taking bone marrow samples. If the samples show zero leukemia cells, Briley will be considered in remission!! :)

home again :)

2011-02-16T16:37:00.001-08:00

Gracie and her new friend Briley making heart shaped pizzas. Please include Briley in your prayers! She has leukemia and is 3 years old. www.teambriley.blogspot.com

last monday before her headache started. i love this picture, she just looks so darn sweet! Tuesday went better and then wednesday she ran into more issues with blood pressure and headaches and oxygen. they turned both the IL-2 and ch14.18 off until thursday morning and kept them both at 5 ml per hour for the last 24 hours. I was soooo beyond ready to get out of there on friday!! (Gracie too) it was a long three weeks. we left around 1:00 pm and made it home at 6. it was so good to see the other kids again and Brandon! Von gave me a huge hug but then he really didnt hang on me much since then. It was bitter sweet. I was glad he was ok but sad he didnt miss me more :) He has done a lot of growing up. he will be 2 in 2 more weeks! Grandpa and Grandma Bloxham came friday night and stayed til yesterday. It was wonderful to have them here! We went back down for clinic on monday. we left at 3:15 am for an 8:45 appt. and then made it back home by 3:30 pm. it was a long day but glad to get it over with. all of her counts were good and we dont have to go back til the 3rd of March for her next check prior to round 3 on March 6. We are so happy for the 3 week break. knock on wood!! please pray she will stay well in between rounds and we can enjoy this time at home. She has had a lot of pain since leaving on friday and also her eyes are still dialated from the ch14.18. they said it should go away after a day or two but it has been 5 already. also please pray for her appetite to pick up and that she can gain weight. thank you so much!! we love you all

Antibodies round 2 week 2

2011-02-08T11:22:00.001-08:00

they started the IL-2 around 9 am yesterday and the ch14-18 at 11. She went and played in the playroom for quite a while until she got a headache. her headache lasted all day and was very intense. It was awful and much worse than round 1. Other than that she was doing ok. Around 7 pm her blood pressure started to drop and her o2 sat was 84 so they put her on the nasal canula of oxygen and stopped the infusions. She also had a high fever so they drew cultures, even though fever is a side effect of the antibodies. She got 3 saline boluses and it wasn't helping the blood pressure so they gave her some albumin and it started coming up throughout the night. She was puking and in a lot of pain all over. it was a very long night and we are both grumpy and tired today. This morning they started the ch14-18 at 11:00 at the half rate and had it run alone for 2 hours, then started the IL-2 at 1. So far it is going ok today. Knock on wood.
I hate this! I know it is such a blessing to have this option now that they didn't have 10 or 20 years ago. I have to keep reminding myself how worth it this all is. It is exhausting though. Thank you all for your prayers and please pray extra hard this week that her pain will be minimal and her blood pressure will be ok. Xoxo

Homesick

2011-02-05T21:25:00.001-08:00

Today I am really homesick. I miss my kids and Brandon. I hate that my little Von is learning to say so many words, and I am not there! I am just feeling kinda down and I think that's ok sometimes. It is just overwhelming at times and I am so glad she is doing well or it would be a lot harder. Sometimes I feel like people have forgotten us but I know that there are still so many out there praying and thinking of Gracie. I don't know what we would do without our great families. We have no family close by, they all have to fly or drive two days, but they have been there the last 11 months. Especially my mom. I'm so grateful she is retired nd able to be there so much, how much harder it would be without that blessing!! I feel bad asking others to help and then get discouraged when some don't offer the help that is needed. I will be so glad when all of the traveling is done with in a few months. It has been a long 11 months. It is still hard. We are accustomed to it so in a way it is easier but the emotional part is taxing. I think I need some sleep!! Lol ;) I don't want to sound ungrateful but I'm just feeling kinda forgotten and wishing I could do more.

11 months

2011-02-04T21:19:00.001-08:00

Today marks 11 months of fighting the beast that is cancer.
Gracie started the IL-2 on Monday morning around 10:30am and finished this morning at 11:00. It ran for 96 hours at 5 ml an hour. she did really well with it and was pretty happy most of the time. she only puked a few times all week and didn't need too much pain meds. her blood pressure was a bit lower than normal but not bad.
she was so excited to be unhooked from all the monitors and cords today and was able to go to the playroom as a free woman today. Gracie met a new friend here named Briley and she is 3. She was diagnosed with leukemia last month. They like playing together, Briley is at the McDonald house now for a while but she came for playtime and will keep coming when she can. Gracie is happy to have a friend. They are so cute.
We are staying in the hospital over the weekend since the McDonald house is full and all motels because of the super bowl is weekend in Dallas, and she needs to finish her antibiotics through Monday anyway. It was a mess with home health last time.
There is a lot on my mind a lot of the time and being cooped up in here there is way too much time to think. :) I'm grateful for such a wonderful family..

A week delay

2011-01-29T10:46:00.000-08:00

We got to Ft worth around 9 pm Sunday night and she was happy and silly. She started complaining that her tummy hurt around 6:30 am and got some lortab. About an hour later, she puked and had a temperature of 105.5 and was saying she hurt all over. I thought, oh great she probably has the flu from going to church yesterday. Then they took her blood pressure and it was low and I knew it was another round with sepsis. They tested for flu and it came back negative, at that point I was wishing it WAs the flu, that would be better than sepsis. Especially sepsis like last month. No thank you! I was really nervous, since she was so bad last time. They tried giving her albumin and a lot of fluid but it didn't help with the bp. So they transferred her to the PICU once again. Brandon was working that day but he drove down after he got off at midnight and made it here about 430. I was so glad to see him.
They started her on dopamine and it took about all day to get the blood pressure up but then she was doing pretty well and didn't have the issues like last time. She went back to the regular floor on Wednesday and has been doing pretty well since then. We will go ahead and start the IL-2 next Monday. So now everything is just pushed back a week. as of today she is great. Eating fairly well and tolerating her feeds well. Brandon drove back home today for work but we were so glad he could be with us this week. I was especially glad that he was here to stick up for me when they implied I might have something wrong with the way I clean and change her dressing. As if I'm responsible for these sepsis's. I am sure they were asking just as a precaution but I was pretty offended and he let them know that we are far more concerned and careful about her lines than anyone. (obviously) he said I probably do a better job than most nurses. I was so happy to have him there, cause I could try and tell them that I know what I'm doing but they might not have been so convinced without him and knowing that he is knowledgable on all of it and sterile procedures. He is my hero :)
The bacteria is enterobacter which was what she had the first time. It was first cultured in her urine. It was also cultured in her urine last month when she had the pseudamonas. It has never fully cleared and we don't know it if is from her dead kidney or what the deal is but it has never cleared the urine, which then goes to the blood and she gets septic. When we go home she will stay on antibiotics to help that. Hopefully that will help and we won't keep running into this problem.
Thanks as always for your continued prayers!

antibodies round 2

2011-01-22T23:36:00.001-08:00

Gracie, Chloe and I went for a pedicure today. It was gracie's first one and she loved it!! they had a fun little chair and a dvd player for the kids. She chose pink polish and a white flower.
Daddy bought roses for his girls and she was so excited that she could hold it. she kept asking if it was ok, because after a stem cell transplant, they aren't supposed to hold fresh flowers. weird huh? well, that is only til day 100 if they are well. Gracie has been doing awesome this last month. She is happy most of the time and active. She loves to laugh and play hide and seek. I have noticed a bit of moodiness this week though, and im thinking it is from the accutane but it is hard to know.
we drove down thursday for a clinic appt. it is pretty crappy that we have to drive 5 hours each direction for a 1 hour appt. but they have to have the bloodwork done at their own lab since it is still in the study phase. everything has to go by their protocol, so we do it. Thursday it was snowing and there was a layer of ice underneath. We headed out at 4:30 a.m. for a 10 oclock appt. my husband was working the night shift and is usually off at 630 but they let him leave a bit early to drive us down. I was glad to have him along. we stopped by his work to pick him up and headed down the road. it took 3 hours just to get to OK City when it usually takes 1 1/2. the roads were pretty slick but the main issue was the drivers. we saw a few cars off the road and a couple crashes. then right before OK City, we got a flat tire. it was SO cold but we got the tire changed and back on the road. I was counting my blessings that he was with us! also, that the tire was on the side away from traffic, we had packed flashlights in the car, gloves and hoods, and sleeping bags(that he kneeled on) even though it sucked, we still knew we had been blessed.
we got to the appointment at 11:45 and they got us right in since I had called and told them about the tire and everything. they drew her blood and talked about the next round and said she looked great. then we were back in the car to head home. we got home at 6 and Brandon went back to work for the next night, poor thing. he didnt get much sleep but he is amazing that way.

our family scored some great deals on clearance toys at target. we donated them to the oncology floor at the hospital here. we took them up there this afternoon and it was fun to see the nurses and have them see Gracie well and happy and silly. she was dragging her favorite nurse by the hand and running down the hallways giggling. I loved watching it. tomorrow we will drive down to Texas to be admitted for round 2. it will be for 2 weeks this time. (rounds 2 and 4 are 2 weeks in patient) we are praying things go well again and ask for your prayers also. thank you so much!

lunch for a cure

2011-01-12T07:31:00.000-08:00

http://www.lunchforacure.org/amazinggracie

how much do you spend on lunch? 2 bucks? 5 bucks? 10 bucks? whatever the amount may be, could you donate one days lunch money to lunchforacure.org. ?? together all our lunches can add up quickly and help save lives!!!

ABOUT NBF

The Neuroblastoma Foundation (NBF) was founded by families of children with neuroblastoma dedicated to eradicating the disease.

The NBF consists of volunteers, business people, medical professionals, researchers, and parents of children with neuroblastoma, all dedicated to ensuring that one day no other child or family enters the world of neuroblastoma. Through their collective experience they provide educational, emotional, and advocacy support to families as well as work to solicit funding for research to find a cure for neuroblastoma.

Continued progress on increasing the survival rate of neuroblastoma, reducing the serious side effects of cancer treatment, improving the quality of life during treatment, understanding the importance of genetics and its influences with environmental exposures, are all part of the continuing efforts of many of the dedicated people that make up the Neuroblastoma Foundation.

100% of the money raised through Lunch for a Cure goes towards funding for research for neuroblastoma

accutane

2011-01-12T07:20:00.000-08:00

Gracie's EGD showed that her stricture was ok but since he was in there anyway he dilated it a bit more. she still has esophogitis but it is much better than last time. we waited around to get her accutane and GMCSF shots before heading home. the shots were delivered to our room around 2:00 but the accutane wasnt delivered til 5. they were having trouble with the insurance but finally got it figured out. I was a bit frustrated but glad to have the meds before heading home. we made it home around 10:30 that night, it was a long day and we were glad to be home! :) Accutane is used for nodule acne. obviously Gracie doesnt have acne but it is also used to stop the growth of NB cells. weird huh? so anyway, we had to sign a bunch of papers saying she would use two types of birth control, and not give blood, and not share the medicine with anyne! LOL totally all irrelevant but that is the paperwork for the regular use of accutane. you'd think they might could do a seperate form for NB. oh well. The accutane comes in a capsule and she cant swallow it so we poke it with a needle and squueze it out into a bite of pudding and she doesnt have to taste it. She just started it yesterday and will take it twice a day for two weeks every course. a lot of people ahve asked me about the accutane so I copied the information below off the website http://www.nbhope.org

Treating Minimal Residual Disease
One of the things that makes NB so difficult to cure is the fact that even when it cannot be found through scans, lab tests, or bone marrow biopsies, the disease can still be present in very small amounts in the body. Doctors believe that this undetectable disease can sometimes smolder and grow, eventually coming back as relapsed NB, which is much harder to cure. Accutane and antibodies are two strategies that have been developed to help eradicate undetectable disease, but the two work in very different ways. Much research on vaccines against NB has been accomplished, but use after frontline therapy is a new development.
Accutane
Accutane, or 13-cis retinoic acid, is a synthetic vitamin A derivative that has been shown to stop the growth of NB cells. Accutane can cause some NB cells to mature (differentiate) into non-cancerous cells. A five-year (1991-1996) randomized study (CCG-3891) concluded that high doses of Accutane improved the event-free survival for children in remission. Since those findings were published in 1999, the use of Accutane has become widely accepted for high-risk NB.

Accutane is given by mouth in capsule form in two-week on/off cycles—the medicine is taken twice a day for two weeks, then children take no medication for two weeks. Typically, children receive Accutane over six months. In the German NB2004 protocol it is given for six months with a three-month break, and then three more months.

Accutane has many side effects, but most are mild, including dry skin, moodiness and sun sensitivity. Because some of Accutane’s side effects can be more serious, children are monitored during their Accutane treatment with regular check-ups and blood draws (particularly for calcium levels and triglycerides).

It is extremely important that pregnant women, and those who may become pregnant, follow strict safety precautions when handling Accutane, because ingestion of the drug (which can be absorbed through the skin) poses a risk of serious birth defects and deformities.
Monoclonal Antibodies
Our bodies manufacture antibodies that create an immune response to bacteria, viruses, and other foreign substances to help keep us healthy. Ordinarily, a child’s immune system will not attack NB because the cancer is a part of the child’s body. Monoclonal antibody therapy (monoclonal refers to development from one clone) uses mouse antibodies produced in the laboratory from plasma (myeloma) cells. The antibodies used in NB treatment attach to a ganglioside (a fat-sugar complex molecule) on the NB cell called GD2. Because the antibody alerts the child’s own immune system to attack the NB cell the antibody is attached to, the cancer cell is destroyed. Long-term immune response may be initiated by antibody treatments in some cases.

COG currently offers a phase III study (COG-ANBL0032) of the monoclonal antibody ch14.18 (administered with “cytokines” to augment the immune response to the antibody) to patients following completion of frontline treatment protocols that include stem cell transplant. After an early review of 226 children enrolled determined significantly higher survival with antibodies, the study was amended in April 2009 to stop randomization and allow all patients subsequently enrolled to receive the antibody. The study will continue until final accrual goal of 423 is met, and it is anticipated that ch14.18 will be part of standard treatment for all COG protocols. The ch prefix indicates the antibody is “chimeric” or part human (75%) and part mouse (25%) in its formulation. In the current European SIOP trial the use of the same antibody ch14.18 is randomized (but without the use of cytokines). Note that the similar protocol number of COG-ANBL0322 using a different but similarly named antibody, hu14.18-IL2, is a closed phase II study which was open only to children with relapsed or refractory NB. The hu prefix means the antibody is completely humanized.

Antibodies day 4

2011-01-06T20:19:00.001-08:00

Yesterday around 4 pm Gracie started coughing a lot and couldn't stop. they did a breathing treatment but it didn't help at all like it had before. This went on for about an hour when they called the doctor and then they turnedthe rate of the antibodies down from 10 ml to 5 and waited for about 10 minutes and it didn't help any so they turned it off. About a half hour later she finally stopped coughing. They left it offfor a couple hours and restarted at the lower rate and she did just fine. So this morning they decided to do the lower rate for the whole 20 hours an it was going well until 4 pm rolled around and the coughing started. It was so weird that it was the same time. They turned it off and waited a few hours and just restarted it a couple hours ago. She has had three breathing treatments today and will keep getting them every four hours until the antibody is done. They have to stop after 20 hours regardless of if she got the whole dose. Luckily she got the whole dose the first 3 days and will get all but 15 ml of the last dose if she does well through the night. The pain has been well controlled the last three days and her blood pressure and o2 sats have been good so it is a little frustrating that this cough is such an issue. We are glad she didn't have any more serious issues.
Tomorrow morning she will have another EGD to check out her esophogitis and See if her stricture has resolved or not. If not then they will dialate it again for the 3rd time. After that we plan to head home for the weekend an come back Monday for clinic. It is a lot of driving but it is worth it to be home and be with the family.

Ten months

2011-01-04T17:24:00.000-08:00

Today marks ten months since we found the tumor that was growing in her tiny little body, it seems so much longer than that!!!!
I wonder how long I will count things in months. It's just too hard to not do, every time I see the date is the 4th, it is the first thing that comes to my mind. I'm sure it will be this way for a while, maybe a long while. Who knows. I always stop and think of how far we've come and how many blessings and hardships we've had. It is overwhelming at times.
Today was the second day of infusion of ch14.18. She did very well today and didn't have a terrible amount of pain. She did have fever again but it is to be expected and the cultures from yesterday are negative. She's had a cough today and had a breathing treatment and is doing a bit better. I'm very happy with how well she did today. It was a good day :)

Ch14.18 course 1

2011-01-03T17:33:00.000-08:00

We got to the hospital last night around 8 and checked into room 3005. We slept ok until around 7:30 when Gracie puked. She had been drinking a lot of water and also coughing. I told them she needed her ddavp but it was only ordered nightly instead of as needed. She finally got some around noon. The infusion started at 9 and she puked again shortly thereafter. She had also been given benadryl and Tylenol prior, and had been drinking a lot still, so it's kinda hard to say what it was from, maybe just all of it together. They alsostarted her on a continuous morphine pump for the pain.
The first couple of hours she did really well and no problems, then around 11 she got an excrutiating headache and was in so much pain, also pain in her legs. They gave her two seprrate morphine boluses on top of the continuous and she was still in a great deal of pain for at least a couple hours. After that she rested pretty well through the afternoon and woke up with a fever and more headache pain. She has been asking for a cold cloth for her head but I keep having to change it since she is so hot. She got some Tylenol after spiking her fever at 38.5 c and then puked about 20 minutes later. I think she must have puked upthe Tylenol also since her fever is up to 39.2. The infusion is almost complete for today. They run it at 5 ml/hr for thirty minutes and then 10 ml/hr for 10 hours. If her blood pressure gets too low, they will stop the infusion for a few hours nd treat the low blood pressure before starting up again. Luckily today has been ok as far as blood pressure goes and she was able to get it done in the 11 hours.
She is pretty sad about being here and misses her sister very much! I'm hoping he rest of the week goes well and she won't be in so much pain, or puking. Of course it could be much worse, obviously, but it still sucks watching her suffer. I'm glad she can rest some. Hopefully tonight will be good on her :)

Day +100

2011-01-02T10:23:00.000-08:00

Well, it is Day +100 since transplant. This is the day we have been worrying about and praying to make it to. the reason is, she had to start her new immunotherapy (ch14.18) by day +100 or she wouldnt be able to do it at all. We were so worried it would'nt happen with all of the set backs she has had and it just kept getting pushed back more and more. Talk about pushing it to the limit! we made it! Gracie and I are driving back down to Ft Worth today to be admitted tonight and start the ch14.18 in the morning. That will go for 4 days. She has the GM-CSF shots for 11 more days and also starts on accutane twice a day on the 11th, through the 24th. this is course one.
She will be discharged friday and stay at the mcdonald house til clinic the next monday. then if all is well, we will come home for 10 days before the next course. It is going to busy busy and crazy, but if all goes according to schedule she would be done the end of may. knock on wood.
Gracie keeps getting mad at me cause I say "Knock on wood" all the time now. and i will not stop. I have no intention of doing so, lol. call me supersticous, I have become so. That is the entire reason I have not updated the blog the last two weeks. Im sorry to those who check often but the last two times I was raving about how well she was doing, is when she got sepsis the next day. I really didnt want to jinx getting to day 100. call me crazy, maybe I am. :) so in the future, just assume no news is good news. that is the general case. xoxo

Merry Christmas and happy new year!!

2011-01-02T09:55:00.000-08:00

We had a wonderfully wonderful Christmas at home!! Daddy had a few days off and we had a lot of time to spend as a family. It was nice to have it just be us, although we love all our family and friends so much, it was just a very special time this year for us to be on our own. We loved it and Gracie was happy and healthy! Thanks for praying for her!!
the kids never complained about getting a tree earlier cause they wanted to wait for Gracie, so we were able to go get a tree as a family a week before Christmas. Gracie enjoyed helping decorate and she got to put the star on top! :)
The week before Christmas we went down to Texas for scans and bone marrow aspirates and they were all clear and showed no evidence of disease! Her dental work went well and she had a lot of work done and has 12 crowns and many fillings. her teeth look beautiful. it took the dentist about 3 hours.
my mom and dad came up on the 28th so we could go back to texas the 30th for clincs. i took my son Shad with me since we were just staying overnight and I had already taken Chloe once. He had a good time and was very sweet to Gracie. It was good for them to have some one on one time. The 30th she had a lot of blood work done and then got her new double lumen central line, which is now on the left side. poor kid is gonna be polka dotted with scars. :) she did really well, and the 31st we went back to clinic for her first shot of GM-CSF. She has to have one for 14 days. We drove back home that day and had happy new year here at home!! she was so excited. she got tired around 10:30 so she just blew her whistle early and did some streamers and party poppers and went to bed.

HOME

2010-12-17T05:49:00.000-08:00

Gracie moved back up to the regular floor last Friday and stayed there over the weekend. They increased her milk feeds and decreased the TPN til she was up to 40 ml/hr. She was doing really well and we weredischarged Monday morning to make the drive down to Ft worth. We left at 830 am and made it to her 115 Appointment at 117. Not bad! Lol
she had labs done that day and saw Dr granger. On tuesday she had the CT scan and MIBG injection. Wednesday was the MIBG scan and Echocardiogram. And Thursday was the bone marrow aspirates and biopsies. Then they realized she hadn't had her dose of pentamadine last month an it was supposed to be every 28 days and I hadn't realized. So after the bone marrows we had to go back to the clinic for an hour infusion of pentamadine, it's a precautionary antibiotic for pneumonia.
We were able to head home at 230 and made it home at 730. Gracie and grandma made a gingerbread house when we got home and she loved it. She was so excited to be home! It had been two weeks since we left straight from Tulsa to Texas.
We woke up bright and early this morning and dropped off grandma at the airport and cane to the hospital for her dental work. Her teeth are awful from all the chemo and stem cell transplant. I think she has a cavity in almost every tooth and they are just getting worse and worse so I am so grateful we are able to get it done today it was either today or in 6 months after immunotherapy is complete. She will go back the 29th to start her immunotherapy. I signed the consent forms on Monday and it was a bit overwhelming, there were 8 pages of potential side effects. It is still pretty early in the study to really know the odds of getting certain side effects but they said most kids it is like flu symptoms and pain. There are going to be 105 kids in the study and 15 from cook Childrens hospital in ft worth. This study has shown a 20% chance increase in survival rates so we are very optimistic about it and it will put her chances at about 50-60% instead of 30-40 where we are currently if we stopped now.
We feel so blessed to have had thanksgiving at home as a family and now Christmas also! We are going to have a fun 10 days spending family time together. Please continue to pray that she will stay well and happy. Love to you all and we wish you a merry Christmas!!
I don't know if I mentioned that they took out the port and central lines and put in a picc line til the 30th :) I am continuing her iv antibiotics at home

Extubated!

2010-12-09T20:37:00.000-08:00

Gracie was able to get extubated this morning and she was so relieved. The first words out of her mouth were "pepsi. pepsi. pepsi." she had been mouthing the word for the past 5 days and also apple juice and water. She got some little sips and did really well with it and had a lot of drinks throughout the day. They started back her milk feeds at 5 ml an hour and she is tolerating it so far.
her blood pressure has been high and they think it is from all the hydrocortisone they have been giving her so they are weaning her down on that and giving blood pressure meds in the meantime.
She was able to get radiation today and will have the last session tomorrow. She did really well as always even though today she was hurting.
She finally started peeing out a lot of the extra fluid and they were worried it would make her sodium go way up like it usually does. they tested it and it was fine so they let her keep peeing it off. they tested a few hours later and it was still ok.
I came home to sleep tonight and Brandon is staying with her. we are trading off nights. we are so thankful that she is off the vent and breathing well on her own. We thank you for all of your prayers and ask you to continue them as we know they are what helps the most! She isnt out of the woods yet by any means but she had a pretty ok day considering all.

Still here in PICU

2010-12-08T19:01:00.000-08:00

Gracie is still intubated in the PICU. She now has pulmonary edema which they think is from a platelet transfusion she had, although it could be several other things or all the fluid. She has put on ten pounds of fluid in 5 days!!! That is ridiculous. She is on lasix to try to get her to pee out the extra fluid but it also causes her to have metabolic acidosis. Her blood ph is still normal so that is ok. Her sodiums have been a little high but not too bad. I think we will stay away from the ddavp as much as possible. She only had the one dose. She is beyond frustrated with being intubated. She tries to mouth the words but a lot of the time we can't understand and then she gets more frustrated. It breaks my heart! I had to walk away tonight for a few minutes and cry cause she was so sad and frustrated. I had her daddy see if he could tell what she was saying. She asked if he would take her home. Poor angel. She has been so patient and hopefully they will get her extubated in the morning. Thy are weaning her off slowly and she is doing ok so far. She needs to finish her last two doses if radiation on Thursday and friday. Then we are going to do a hospital to hospital transfer on Monday to ft worth for her pre- antibodies workup. They are talking wih insurance to get Them to approve the ambulance.
The blood cultures are negative now for the last few days so they cut back to one antibiotic. She is c diff positive for the 4th time and starting on flagyl for that. It is so frustrating to watch her suffer.
Please keep praying hard for her.

Pseudomonas sepsis

2010-12-06T06:40:00.000-08:00

bipap
intubated

The blood cultures all came back positive as pseudomonas sepsis. They started her on oxygen Friday night because she was having a rough time breathing. Her belly is distended because of the fluid in her belly. this is because of the infection, she also has DIC. http://emedicine.medscape.com/article/779097-overview
DIC stands for Disseminated intravascular coagulation.
Saturday night they started her on bipap to help her breath but she kept pulling it off and they just did a high flow nasal oxygen. Sunday they did surgery to remove her port and central lines because they were the source of the infection. She had platelets 3 times and also plasma and did good during surgery without any clotting problems. They also started her on lasix to try to get her to pee out some of the added fluid. She is weaned off the levophed and coming down off the dopamine also. {for blood pressure}
They kept her sedated and intubabted all yesterday and all night last night to let her body rest. She had a rough few days of really working hard to breathe and got little sleep because of it.
Thank you everyone for fasting yesterday and for praying always. we cant tell you how much it means to us!!!

Amazing Gracie

2010-12-05T10:25:00.000-08:00

PICU (again)

2010-12-03T09:39:00.000-08:00

Gracie is back at the PICU. She said she was tired last night around 9 and that she was cold and had a headache. I took her temperature and it was normal and gave her lortab for the pain. a couple hours later she woke up puking and she was very hot! I took her temperature again and it was 104. so i immediatly knew we needed to take her in (obviously, right) so I called the oncologist and they said to bring her in. I took her in and they drew blood cultures from all 3 lines and started anibiotics and saline fluids.They gave her 3 saline boluses, Her blood pressure was normal at that point but it quickly dropped very low. getting down to 30/13 toward morning so they transferred her to the PICU to start a dopamine drip to increase her bp. She has been there at the PICU for about 4 hours and no change in her bp.(it was 42/15 when i came home just now for a nap. she is on the dopamine and also albumin along with 2 antibiotics. Her first blood culture already came back positive for bacteria which was very fast. it usually takes 24-48 hours. The doctor said she has pretty significant sepsis and will likely be taking out her double lumen line and possibly her port. She is in a lot of pain throughout her body. Please pray for her pain to be lessened and that the infection will be cleared from her body. My mom is on a plane now and will be here this afternoon. So thankful for her and also those who help watch my kids. xoxo

So much to be thankful for

2010-11-24T21:17:00.000-08:00

happy Thanksgiving! we have so much to be thankful for! Gracie is doing well with radiation and is happy and silly. She is almost the same little girl she was before. she will never be the same, but that is ok cause she is becoming such a wise soul.:) She is doing the best she has in the past 9 months or longer, so we feel verY blessed.
a few months ago I started making a list of blessings we have received through this time. it was during a rough patch with chemo and infections and she was so sick I thought we might lose her, I had the feeling to make a list of blessings. the Lord has said " in all things, give thanks" It is so easy to see the bad and dwell on it, and I of course am guilty of this from time to time, but it does nobody any good. if we can stop and count our blessings, we realize how blessed we are because of and despite our trials.
the first blessing is our wonderful family and children, who love us and support us and help us. it has been so nice to have so many family members be able to help in one way or another. Wether it be, watching our kids, doing fundraisers, sending cards and Gifts, and all the phone calls to know we are loved and thought of and prayed for always!! we are blessed that Brandon has a good job and he is able to work extra shifts when he can.I'm so thankful my mom retired and is able to stay for long periods of time with the other kids, Im thankful for my in laws who have made three trips with every break they get to help us out. also my sisters and sister in laws for coming weeks and months at a time.
i'm thankful I have diabetes insipid us and that I am able to know how to manage Gracie's diabetes insipidus as well. I am able to know what she needs and how she feels.I'm thankful Brandon is a doctor and knows the medical language and helps me better understand. also that he can know what needs to be done or what questions need to be asked.
I'm thankful for all the friends and strangers who have donated time and money and meals and helped watch my kids. I'm thankful for the smiles and kind words, cards and letters , donations,gifts, blood drives, and prayers!
I'm thankful for the gospel and the comforting power of the holy ghost. I'm thankful most of all for prayer, for the comfort I receive when I pray and for the peace I feel through all those around the globe praying for our family. I know God hears them and he blesses us. I don't know what the future holds for Gracie but I am thankful for each day with her and Watching her grow and learn and be happy and smile. I'm thankful for so many more things that I hold dear....
I am blessed with a wonderful loving husband and four beautiful children. I love them more than life.
I am thankful for all of you. God bless you.

HOME again

2010-11-18T16:12:00.000-08:00

We got to come home yesterday!!
Gracie had a good week at the hospital. She was off the IV fluids and just doing everything the way we would at home with medicines and feeds. She was happy and walking around a lot and she went to the playroom every time they opened it up. I really wish we could have just been at home the last week but I understand them wanting to watch her closer. Just grateful she did so well and the antibiotics worked so quickly. It was scary in the beginning and it could've easily been worse. We are blessed. Also so blessed to have Shayla here to help with the kids. She will fly back tomorrow. :(
Today Gracie started radiation therapy and she did so good!! She layed really still and didnt cry or complain. I am usually able to stay in the room for her scans or hold her hand even but with radiation, nobody can be in the room. I thought there might be some tears but she was amazing. She layed there for about a half hour while they did the x rays and lined her up to match the CT scan. the actual radiation part was very quick. They said they only have to do the x rays the first day so every other time will be very fast. She has 9 more days of radiation therapy and then we will head back to FT Worth for more scans before starting the antibodies therapy.
The next 5 days I will give her the rest of her antibiotics through the IV at home. They switched it to once a day instead of 3 and I gave her the first dose today. It was very easy. I dont know why there was such a big deal about doing it at home in the first place but I am just glad we had Shayla here to help so we were able to stay for as long as they wanted. :)

Day +49

2010-11-12T07:52:00.000-08:00

Gracie had a gret day yesterday and was acting silly and happy. Her pain is getting better and she even walked some yesterday and today. She has been eating a lot of spaghettios! :) also, pudding, toast, crackers and gravy! She ordered mashed potatoes and gravy and only ate the gravy. So I said " I guess I shouldve just ordered a bowl if gravy!" but I was just kidding and she thought it was a great idea. Lol so she ordered a bowl of gravy for lunch and dinner.
Her feeds are up to 50 ml an hour which is what she was on at home so that's great! For the weekend the dr said to just let me do the milk how we do it at home to see how it goes. She hasn't puked in a few days thankfully, knock on wood. She is on two antibiotics through the IV three times a day for another ten days. They would like to keep her here but said we can maybe go home Monday. They just worry about me being able to handle six antibiotics a day with 4 kids. Oh ye of little faith! Haha. I know I can handle it, I know it won't be busy but it will be better to be home anyway! :) everything is better at home!
We will still be coming to the hospital everyday for radiation but that is only like 15 minutes a day.
We are grateful that the antibiotics are working well so quickly and pray it will take care of it for good! Thanks to everyone for remembering her in your prayers always. Xoxo

Getting better

2010-11-10T16:33:00.000-08:00

All of the blood cultures and urine culture came back positive for gram negative rods, the next day the narrowed it down to lactose-fermenting gram negative rods, and finally today have itclassified as enterobacter cloacae. It is a bacteria that is found a lot in people with compromised immune systems. They are thinking hers spread from her bladder or kidneys since she has a positive urine culture and has been having issues with her kidney(s).
The good news is that the culture from yesterday is negative so the antibiotics are working. They added an additional antibiotic for better coverage and are alternating them between her three lines to make sure and cover it all. She will be on antibiotics for 12 more days.
Today she had her planning CT for radiation therapy and they drew little marks on her with permanent marker. She gave them a funny look and they said " oh these are special markers! You should never draw on yourself, right?" lol she held really still and dud great, they let her choose two prizes from the treasure chest. :) she chose a paint set and a fuzzy poster with markers. (of course:))
also today she had an ultrasound of her kidney and bladder. And also an echocardigram.
It has been a long day without a nap and she hasbeen emotional off and on and also in a lot of pain from her tummy. She is ready for bed at 630! I am too!
They will start radiation therapy next Wednesday.

http://emedicine.medscape.com/article/216845-media
medical jargon on enterobacter cloacae

2010-11-08T12:13:00.000-08:00

Gracies blood pressure is normal now and they are weaning her slowly off the dopamine. She is more alert today and talkative but still hurting quite a bit and has a bad headache. All 3 blood cultures and also the urine culture came back positive for bacteria. She is continuing antibiotics and they drew cultures again today to see what the antibiotics are accomplishing thus far. Thanks for all the prayers and please keep them coming

PICU

2010-11-07T16:50:00.000-08:00

A lot can happen in 24 hours! It seems as soon as we have any sort of plan in place is when something bad happens! we just made a plan on friday to start with radiation therapy and then she made a turn for the worse last night after my last post!! seriously crazy.
Gracie had a temperature late last night of about 101 and I gave her lortab and it didnt go away, I gave her ibuprofen a couple hours later and she still had a fever of 102. I called the oncologist in Ft worth and he said to get her blood drawn and if her counts were good, to get an antibiotic RX and go back home since she had no other symptoms. well, her counts were good and she came home with an RX around 2 am. She puked in the night around 430 and I turned her feeding pump off. Then she puked again at 8. she puked up her morning meds as well and also pedialyte. She kept complaining of a headache and was weak and tired. I put all the kids in the car to go fill her RX but when we were pulling up to the window, she started breathing weird and it freaked me out so I just kept driving to the hospital. My friend came and picked up the kids for me. Brandon found someone to cover the last few hours of his shift.
When we got there her blood pressure was very low. 60/31. a while later it was 48/20. They gave her iv fluids and drew blood cultures and labs. Her white count during the night had been 3.1 and now it was 20. They gave her a couple saline boluses and her blood pressure didnt change much, so they transferred her to the PICU and started antibiotics and medicine to increase her blood pressure. she hasnt peed much even with all the fluids and they are going to start a catheter if she hasnt peed by 10. I came home to sleep and brandon stayed with her tonight. She was getting a blood transfusion when I left. They are suspecting sepsis but wont know until the cultures come back in a day or two.
my sister in law is flying in tonight and will stay the week to help with the kids. we are so blessed to have such wonderful family!
please pray for her!

Gracie shakin her booty

2010-11-06T16:32:00.000-07:00

Still doing great. day +43

2010-11-06T16:08:00.000-07:00

Gracie blow drying her "hair" she was a butterfly for halloween and keeps wearing the jacket part.

Decorating cookies on halloween. she loved it/

happy girl.

The last couple of weeks have flown by and there hasnt been anything major really that i thought, hey, i should blog about this. but it IS major!! She is doing SO well and is SO happy and running and playing and dancing. What a huge blessing!!!!

I took the kids to the church trunkortreat last friday and they had a lot of fun.

Last sunday was the kids' primary program at church and Im really not supposed to take Gracie to church or crowded areas til about day +100. I did take her for the program with a mask on and left before it was over so to get out before the crowded halls and all. Anyway, I sat next to my friends who are also my neighbors and they helped with Von.

During the first song, I just broke down. A flood of emotion came over me. I suddenly realized that Gracie should be up there! This should be her first primary program! I dont know why I hadnt realized it until then, but seeing all the little girls from her class, I felt a twinge of bitterness at cancer once again, but the feeling was immediately crowded out with feelings of love and thanks to my Father in Heaven. I felt the spirit so strongly and I continued to sob. The song was called "I know my Savior loves me" It is so beautiful and I felt the love of my Savior and knew of the love He has for all the sweet children. I was more aware of my other children and the feeling to not ignore the healthy. I am so blessed to have my 4 sweet children.

after church, we decorated cookies and then went trick-or-treating around the block.

Yesterday we met with the Radiology doctor to discuss radiation therapy. She will have the planning CT done on Monday and start radiation the following monday. She will go every day for 2 weeks. luckily, it doesnt take long and the main problem is just the hassle of driving there every day. I'll take it!!! :)

We are grateful for all of the cards and notes and especially for the continued prayers. xoxox

Day +31 and Doing good :)

2010-10-25T16:52:00.000-07:00

We got home last thursday ( the 21st) and there was a welcome home party waiting, with daddy, and grandma and grandpa, and her brothers and sister. She had asked for a pinata so there was a fun princess one that daddy had bought. She was SOOOOO excited to be back home. it had been 6 weeks since she left home.
Gracie is doing so well and talking and laughing and running and playing. She still takes one or two naps a day but she is getting stronger every day. im so happy to see her play and be active but i dont want her burning calories at the same time! :)
Her feeds are going pretty well. i have it at 40 ml/hr at night and then 4 bolus feeds each day of 120. she still has random times of pain and puking but it is much improved overall/
Today we went to the clinic here and everyone was so happy to see her walking!!! and happy and talkative. Her counts were good today. tomorrow she goes for a dental exam to see how long it will take to fix all her cavities. then we have the rest of the week "off" from doctors. I am waiting to hear when radiation will start. hopefully in the next couple weeks.
My mom and dad left today and it was my first time alone in a long time. lol i took gracie and von to walmart this morning arond 9:30 and Von (20 months) was really whiney. i thought that was weird since it was too early to need a nap. then we passed the food and he really freaked out, then i realized i didnt feed the poor kid breakfast!!! all i had given him was juice while i was getting gracies meds ready. totally spaced breakfast. LOL. im used to gracie and she doesnt eat anything. haha, it will take some getting used to all over again. heck, i dont even really know what he likes to eat! good thing he is forgiving. :) I bought some bananas and he scarfed it down in no time.
Gracie is starting to eat a little bit here and there but most food still tastes really bad because of the mucositis. She did eat a little lasagne tonight. hopefully it will get better and better.
The new carpet and paint looks great and Brandon and my parents worked really hard to clean the house and im so grateful, now i just need to keep on top of it! wish me luck
:)

glad to be home. :)

A good day

2010-10-18T21:09:00.000-07:00

Today was a good day. :)
We woke up around 8 and I did the blood draw and we went to the clinic. It went so mich faster, with having the blood already drawn. We were out of there in an hour. Her counts were still pretty good. She is doing well, besides some puking. Praying it stops soon.
They said we can go home Thursday after her next clinic appointment, as long as she is still doing as well. Tomorrow she has a kidney scam to test the blood flow. They just want to check before radiation.
I did her dressing and cap change tonight and was so proud of myself!!! Then I looked down and saw the biopatch sitting there unopened! Ugh! I totally forgot to put it on. For a split second I thought to just leave it, since I had already cleaned it well with the chloraprep. But I knew that it was important and I didn't want to run the risk, so I had to take off the new dressing I had just done and do it all over again. I felt so bad. She did well with it and I promised to not forget the biopatch next time! She was so forgiving even though her skin was sore.
We had a good day together doing puzzles and coloring and painting and watching tv. She also has wanted to sing the ABC song all day and it is really cute. I'm happy to see her happy and wanting to sing. She was running down the hall and fell down and skinned her knees. I was happy and sad at the same time. Happy she felt like running and did! Sad that she wasn't very steady and fell. It is good to see her want to be a kid again. She wants to learn how to skip. So cute.
We can't wait to get home in a few days!!!!!!!! Please continue your prayers that she will be well. Xoxo

Breaking out party

2010-10-17T03:06:00.000-07:00

Breaking out of the hospital

2010-10-16T17:10:00.000-07:00

Yesterday was the big day!!! Break out day!
After being admitted for 30 days, she was free! The average stay is 28 days so she did pretty good! There were a few others that had been there two or three months so I am grateful she was able to go after 30 days. I'm counting my blessings, cause it could be so much worse. Gracie is doing great!
I learned how to do the blood draws and heparin and saline flushes. I have to flush both lumens with heparin every day. I also learned to change the caps, which needs to be done once a week, along with the weekly dressing changes. I was a little nervous today for my first unsupervised heparin flush but I realized I know how to do this stuff and I can do it!!! No problem.
Gracie was released around 3:30 in the afternoon and they had her breakout party all ready. She got to break through the streamers blocking the door. It made me a little emotional, as you might imagine. I was so proud of her. Then we had the ice cream and she even ate three bites. Very fun, they also gave her presents!!! That was what really won her over! Lol. She got, a ladybug game, puppy in my pocket, and a doodle bear. She was chatty and happy. It was wonderful :)
Than we came to the Ronald McDonald house where we will stay for a week and go if all is well. They have special rooms here for stem cell transplant patients since they can't be around a lot of people. It is like a studio apartment, it has a large bathroom and two beds and a kitchen and table. Also cable tv!! Most rooms don't have cable or anything and you aren't allowed to eat in them. The Ronald McDonald house provides dinner very night but since she isn't supposed to eat off an assembly line style, she is allowed to eat in her room and we bought a few groceries and snacks. Today we had popcorn and watched sleeping beauty. I should say I had popcorn, she ate two pieces. :)
We have been sleeping a lot today. Yesterday was a long day.
The house got new carpet today and paint yesterday. My Parents are going to deep clean before we come home. Gracie won't be able to go to church or anywhere with a lot of people for a few months. And visitors will be limited. The main challenge will be getting my other kiddos to wash their hands!!!! They want everyone in the house to wash hands 2-3 times an hour.
We are so grateful for all of the continued support and love and prayers. Please pray for her to stay healthy and strong while we are home so she wont have to go back prematurely. We are blessed. Love to all and glory to God.

day +20

2010-10-14T19:28:00.000-07:00

Gracie had another EGD done today to dilate her esophageal stricture. The stricture looked a lot better than last time but he ballooned it a bit more and will still need to repeat it in a few weeks to get it where it needs to be. Her gastritis and esophogitis were worse this time but he took some biopsies and we will continue with the higH doses of prevacid etc for her reflux.
Gracieis doing great and tolerating her feeds well which are now at 50 ml an hour. We will keep increasing it a little at a time so she doesn't have to be on it 24 hours a day.
Gracie had a huge meltdown today about her bald head. It broke my heart. I tried telling her how beautiful she is but she just got more mad. She said people thought she was more beautiful with hair and that she wants her hair to grow and it takes too long and her wig is too scratchy. Etc. All the while sobbing. It is the first time she has acted this way about it. I felt so bad. She is probably just sick of it all, and she is right, it does take a long time. It is hard for such a girlie girl to not have her long curly beautiful golden honey colored hair. It is her face and spirit that are beautiful though! She truly is gorgeous in and out. I hope she will feel better about it. I'm going to stop showing people her "before picture", I think that probably played a big part. :( I feel awful.
I did my first blood draw today and did well. Pretty easy. Also they have the parents do the meds the last couple days just to make sure you know how to measure it correctly!! I thought that was so funny, like who doesn't know how to measure medicine!? They said you'd be surprised. LOL. They said people are pretty incompetent for the most part. Haha.
The best news of all is that we get to get out of here tomorrow!!!!!!!!! YEAH!!! We still have to stay a week in town at the Ronald McDonald house but we are so happy to be done! The child life lad came by to have Gracie help plan her breaking out party! Gracie decided on an ice cream party with chocolate syrup and rainbow sprinkles. I doubt she will eat any of it but it will be fun! She is so ready to go home. The last few days she has cried for home and her daddy. She has been gone from home for 5 weeks, and one more will be 6. I'm just grateful it isn't longer.
The house is getting new paint and carpet next week and it will be scrubbed and clean for her return. :)

Day +18

2010-10-12T20:15:00.000-07:00

Gracie is doing great! She looks great and she is happy!
Saturday and Sunday my parents brought my other kids down to visit. Gracie loved it! (me too) we could only have two people at a time so we took turns. The kids had to be older than 5 to go in her room, so the two older ones could but, little Von could just look at her through the glass. She loved seeing her little "bubba" and he loved seeing her. There is a big playroom down the hall so the little one just had a blast playing in there while grandma and grandpa and myself took turns watching him. It was wonderful to see them even though I had just been home three days earlier.
Gracie improves more and more each day and gets stronger. She loves to do her crafts and it is a nice little walk over to the play area, so she gets her exercise a few times a day walking over and also walking to the bathroom for her bath and sometimes for the potty, :) depending on her mood)
The really exciting news today was that she made her own red and white blood cells and platelets!!! Her new cells are getting to work! We are thrilled.
Her mouth is almost back to normal and she hasn't puked much. Her feeds are up to 35 ml an hour now and they have cut back on the TPN. They said she can get out of here on Friday. Thursday she has to have a repeat on the EGD to do another balloon dilation of her esophagus from her stricture she had when she was admitted. He was able to balloon it a lot but not to where he wanted. Hopefully it hasn't closed back down too much.
We will then stay a week across the street at the Ronald McDonald house just so they can make sure she is still doing well before we go home. Also they said she can do her radiation in Tulsa so we are happy about that. That will be in another few weeks.
Yesterday I did my first dressing change on her central line. I will have to change it every week when we go home. I did pretty good job for my first try, cause I've seen it done so many times!! Lol I will also have to flush her lines with heparin very day to prevent clots. I'm turning into a regular nurse. Haha.
Thank you for your prayers and please continue to pray especially when we go home that she won't get sick. Her immune system will be fragile for some time.

Improving (day +14)

2010-10-08T11:59:00.000-07:00

We've been here at the hospital for 22 days. Gracie is improving More each day. Yesterday they took her off the morphine pump but still left the button for if she needs it. She pushed it a few times in the night. Today they put her on lortab every four hours and she is doing awesome. She is happy and talking a lot. Every smile makes me feel so blessed!!
She went over to her play area again this morning for more coloring and painting. She is such an artist :)
They started her on the milk pump last night at 10 ml an hour. That's hardly anything (2 tsp) but she did great and didn't puke at all!! Knock on wood. They are going to increase it to 15 ml an hour continuous over the weekend and see how shes doing on Monday and taper off on the TPN. They said if she keeps doing so well that she could probably get out of here sometime next week!! Her kidney, heart, and liver function are all doing great as well. Her counts are good and she hasn't needed transfusions the last two days.
After we get out of here, she will need to stay at the Ronald McDonald house for a while. Then maybe we can go home for a little while before radiation in a few weeks.

Day +13

2010-10-07T08:10:00.000-07:00

I had a great time at home with my other kiddos. Gracie and daddy had a pretty good time here at the hospital. She has been talking his ear off the last couple days and he even had her laughing. Her white count is up!! Her strength and energy are coming back. Her mouth is still bad but much better than it was, so at least she can talk again!
Last night they moved her to a bigger room. It is easily twice as big, with its own playroom. It is great!! She immediately wanted to go play at the table in the play area. She has a lot of puzzles and crafts and coloring things that people have sent her. Thank you!!! She keeps beating daddy at e memory game, but she plays by her own set of rules!! Haha.
This morning she wanted to go over again and play. It is great for her cause she walks over there and back and is sitting up while she is over there. She got pretty tired after about 40 minutes but I'm sure she will go again later and just get stronger and stronger! I wish all of the rooms were this big, the difference is apparent already in her mood and her desire to get up and do things, it is great for her healing. But this is the only one this big cause its on the corner and wraps around. Too bad. I wish all the kids had one.
Gracie is still puking a few times a day so she is still on the TPN. I'm not sure when they will try the milk feeds again. Her heart rate is down to about 110 and her blood pressure is good. Her diabetes insipidus is being managed pretty well with the new doc. He is the one we had the last day after her surgery and I was impressed with him. I think he knows his stuff.
Brandon will fly back home today for work. It has been good that he could come these few times. Next weekend my parents are bringing the other kids down to visit. Gracie is so excited. She said she needs to lock her new tinker bell diary before her brothers come. Lol
Thanks SOOOOOO much for all the prayers!!!!! The Lord truly hears them and blesses us.

Day +9

2010-10-03T06:18:00.002-07:00

Well yesterday I said she didn't need platelets but she ended up needing em in the evening. She got some again this morning so that makes 9 days in a row.
the night went pretty.good besides a couple times of puking. she is still sleeping quite a bit. Her mouth is looking a little better and she is actually talking again a little bit so that is good. She hasn't needed to push the morphine button more than a couple times in the last 24 hours. She still has the continuous dose going but it is nice to know her pain is improving.
Brandon will be here in a few hours and we are so excited to see Him!! I'm also way excited to go see my other kids for a few days. Ive never been away from them this long. It seems longer than 3 weeks.

Day +8

2010-10-02T10:11:00.000-07:00

Gracie slept all but a couple hours yesterday. She was so tired and it was good to know she was getting rest and the morphine was controlling the pain. Her blood pressure was really low last night and her heart rate was steady around 170, so it was no surprise to hear she needed blood today. That helped with the blood pressure. It is still fairly low but not too low. And her heart rate is around 140 which is what it has been for the whole time with cancer, or higher. It doesn't really go much lower than that very often.
She had playlets again yesterday for the 7th day in a row but she didn't need any today.
Her mouth is starting to look a bit better. It is still awful of course but they think she might be ready to turn the corner and hopefully see the white count coming up in the next few days. I sure hope so!
The sodium issue is driving me a bit crazy but I guess I should let the DRs do their job. This morning her sodium was 135 which is the low end of normal but she hasn't been peeing a lot at all and is up 2 lbs of fluid from yesterday, yet the doc still gave her the ddavp. I'm not exactly impressed with this particular endocrine doc and I feel like every time he is on the clock, he screws things up. I asked the nurse " why did he give her a dose when her sodium was that low and she wasn't peeing." she said "he's the doctor, and he knows more than you or I. I guess that's why he's paid the big bucks" um, wow, ok.
Anyway, tomorrow Brandon is flying back down for a few days and I will go back home for a few days to be with my other kids!!! I'm so excited to see them, it has been 3 weeks! I think I will let them skip some school and we will go to the fair. We are going to make homemade chocolate chip cookies cause I've been craving them forever!!!! I will treat it as an early birthday.
Thank you to everyone who has sent Gracie cards and letters. Most of you, we have never met and we feel so loved! And most importantly, thank you for the prayers!!! We know God hears them and is blessing us all.

Cookbook Fundraiser

2010-10-01T11:52:00.000-07:00

Here's what the Gracie cookbooks look like..Get one today!

Scentsy buddies fundraiser

2010-10-01T11:49:00.000-07:00

Lisa's friend Sara Mendenhall is a scentsy consultant and is donating %100 of her scentsy buddy profits to Gracie's care. Order these adorable yummy smelling stuffed animals here https://saramendenhall.scentsy.us/Buy/Collection/163

Day +6

2010-09-30T09:40:00.001-07:00

The night went pretty well. Her puking is a lot less and her pain is better managed although they are increasing the morphine every day and also today. Also more platelets today. Her sodium was 169 this morning at 400 so they gave her some ddavp and tested it again at 6 am and it was still high at 164. They decreased her iv sodium amount and retested at 4 this afternoon and it was 153.
They are taking the sodium out of her TPN as well and hopefully it will get back to normal. They think she was probably just getting dehydrated. Stupid diabetes inspidus.
They gave her some medicine for itching cause of her dry peeling skin. Her mouth is horrific. I can't even describe it as hamburger, I don't have words for it, just that I am SO glad for pain medicine!!! Poor sweet baby.
The doctor and nurse were raving about her and what a good patient she is. They said "seriously, she is so good about everything, she never complains and she is amazing." I said I hear that a lot :) but I don't even have to hear it to know. She is patient and sweet and close to perfect ( in my eyes) :) I cant imagine how mean and grumpy I would be if I went through what she does. I hear all the kids screaming at all hours of the day and night and that is normal! It breaks my heart for all of their suffering. Please pray for all of them and all the children affected with cancer and illness. God bless them.

Day +5

2010-09-29T19:02:00.000-07:00

The night was long with her needing the pain pump a lot. They increased the morphine again. She got platelets again for the 5th day in a row. They said she will probably keep needing them every day for quite a while since the platelets tend to be the last thing to grow. She also got red blood cells today. The day went fairly well in cancer's standards. the increased morphine helped a lot until her bedtime mouth care. She had the regular base dose plus pushed the button twice plus had the larger nurse dose. Poor baby. Now she is sleeping well and snoring. :) her skin is peeling on her entire body and is so itchy even with the constant amount of lotion. Her hair is all fallen out now and I adore her precious perfect bald head. Her mouth looks awful. Every day it gets worse even when I think it can't possibly. She is pretty tired and sad but she doesn't complain. She got a tiny hint of a smile when she received 6 letters yesterday. I think her mouth just couldn't move much but I could see the happiness in her eyes. It made me want to cry. Thank you to everyone who sent her letters and even some people I've never even met. We appreciate it.
I'm sorry for unloading yesterday about the comments! My Facebook inbox was flooded with people asking if it was them. I'm sorry for making everyone think it was them when really it is a select few. And it really only bothers me when I'm incredibly stressed out, like the last few days. :)
Gracie also had another chest x Ray as a continued followup for the chylothorax and it was still clear thankfully!! Thanks so much for all the prayers throughout everything these 7 months and hoping you will continue them for the remainder of her treatments through the spring. They are what helps the most.

Day +4

2010-09-28T11:53:00.000-07:00

Gracie got platelets again this morning-4th day in a row. she had an ok night as far as puking goes but her pain gets worse and worse every day. She is on the morphine continuously and also can push the button for more or the nurse can give her a larger dose. the nurse does the larger dose before every mouth care. She does the mouth care 4 times a day. She has to swish mouthwash and then clean her teeth with gel cam to prevent further cavities. I say further cavities because her entire mouth is full of cavities from the 7 previous rounds of chemo. She is going to need a TON of work when she is well enough. Some of the teeth will need to be pulled. Her mouth is what is hurting the most right now. She holds her hand over her mouth after the mouthwash and screams in pain.Sometimes just suffers in silence. It breaks my heart. I just cant imagine how much pain she is in for it to still hurt with all the morphine and methadone she is on.
Her hair has started falling out and will probably all be gone tomorrow or the next day. At least this will be the last time for that since she doesn't have any more chemo!
Gracie draws pictures and they still always have smiley faces. I am surprised it isn't frowns by now, but she continues to be happy and hardly complains at all. She does pictures on the cookie doodle app on the iPad. She still is enjoying her puzzles.
I have been annoyed at some of the comments I receive here and on Facebook but I know all of you mean well and I try to not let it upset me. I truly appreciate all the love and concern. It is impossible to understand without going through it yourself. There is too little said and done about childhood cancer and educating people about the horrificness(is that even a word.) of it. I don't share every detail about what she has gone through or is going through mainly because of the comments. I don't want to offend anyone but I wanted to say something about it. We know the Lord is mindful of Gracie and all of our family and we feel His love abundantly. Thanks so much for your continued prayers.

Overview of stem cell transplant from www.nbhope.org

2010-09-27T23:33:00.000-07:00

Neuroblastoma High-Dose Chemotherapy/Radiation Therapy and Stem Cell Transplant

This type of treatment is used in children with high-risk neuroblastoma who are unlikely to be cured with other treatments. It involves giving high doses of chemotherapy (higher than could safely given otherwise) and/or radiation therapy (total body irradiation or high-dose MIBG), and then replacing the body’s bone marrow cells, which were killed by the treatment. In the past, this type of treatment was commonly referred to as a bone marrow transplant.

The bone marrow is the soft, inner part of some bones where new red blood cells, white blood cells, and platelets are formed. Red blood cells carry oxygen to all parts of the body. White blood cells are part of the immune system, which fights off infections. Platelets are needed to stop bleeding caused by cuts and scrapes.

Both chemotherapy and some types of radiation can affect blood-forming stem cells in the bone marrow. (These are the cells that make the different types of blood cells.) Even though more intensive treatments might be more effective in treating tumors, they can’t be given because they would cause severe damage to the bone marrow, leading to life-threatening shortages of blood cells.

Doctors try to get around this problem by giving the child an infusion of blood-forming stem cells after treatment. This is known as a peripheral blood stem cell transplant (PBSCT).
What It Involves
The first step in a PBSCT is to collect, or “harvest,” the child’s own blood-producing stem cells to use later. In the past, the stem cells were often taken from the child’s bone marrow, which was done by drilling small holes in certain bones. But doctors have found that these cells can be taken from the bloodstream during a procedure known as apheresis. This is similar to donating blood, but instead of going into a collecting bag, the blood goes into a special machine that filters out the stem cells and returns the other parts of the blood back to the person’s body. The stem cells are then frozen until the transplant.

After the harvest, the child gets high-dose chemotherapy and/or radiation. When treatment is complete, the patient’s stem cells are thawed and returned to the body in a process similar to a normal blood transfusion. The stem cells travel through the bloodstream and settle in the bone marrow. Over the next 3 or 4 weeks, the stem cells start to make new, healthy blood cells in the child’s bone marrow.

Until this happens, the child is at high risk of infection because of a low white blood cell count, as well as bleeding because of a low platelet count. To avoid infection, protective measures are taken, such as using special air filters in the hospital room and having visitors wear protective clothing. Blood and platelet transfusions and treatment with IV antibiotics may also be used to prevent or treat infections or bleeding problems.

A peripheral blood stem cell transplant is a complex treatment. If the doctors think your child may benefit from a transplant, the best place to have this done is at a nationally recognized cancer center where the staff has experience in performing the procedure and managing the recovery period.

A stem cell transplant is also very expensive and often requires a lengthy hospital stay. Because the procedure is so expensive, you should have an idea of how the costs might be covered beforehand. Be sure to get a written approval from your insurer if the procedure is recommended for your child.

Possible Side effects
Possible early complications and side effects are basically the same as those caused by any other type of high-dose chemotherapy or radiation therapy, and are due to damage to the bone marrow and other quickly dividing tissues of the body. They can include low blood cell counts (with increased risk of infection and bleeding), nausea, vomiting, loss of appetite, mouth sores, and hair loss.

One of the most common and serious short-term effects is an increased risk for infection. Antibiotics are often given to try to prevent this from happening. Other side effects, like low red blood cell and platelet counts, may require blood product transfusions or other treatments.

Some complications and side effects can persist for a long time or may not occur until years after the transplant. Be sure to talk to your child’s doctor before the transplant to learn about possible long-term effects your child may have.

Day +3

2010-09-27T19:08:00.000-07:00

Gracie has had a rough couple days. She got platelets yesterday and again this morning. They want to keep her platelets above 50 because she has had blood in her vomit from the severe mucositis. she is still puking quite a bit and in pain. Most of her pain is from her raw mouth and digestive tract. (from mucositis) she also has a lot of pain in her chest by her new double lumen line. her mouth really does look like raw hamburger. Her cheeks look like a chipmunk from being so swollen and she can hardly open her mouth. She has stopped talking cause it just hurts too much. She just uses hand gestures. The doc says this is pretty well expected and it will get worse around day 7. Worse!!! Ugh. She is on a lot of morphine and pretty doped up. She continues to amaze us and all around her with her courage and perseverance. She is an angel. Please pray for her pain to be less and for her mouth to get better sooner than later. It has been a rough few days and I am so grateful my husband was here with us.
Brandon leaves tomorrow for the week and will be back Sunday. Today I slept in till 11 am at the Ronald McDonald house and then he sent me to get pampered with a new haircut and highlights. It took 5 hours! It was a much needed break and I feel refreshed to go about the next 5 days alone. I also had the chance to relax yesterday and paint a canvas at the Ronald McDonald house. It was the first time I had tried painting on canvas and it was fun. I'd love to keep trying it.

Day 1

2010-09-25T13:29:00.001-07:00

Gracie had a blood transfusion yesterday and platelets this morning. she also has a fever so they started antibiotics and drew blood cultures from her double lumen line and they also needed to draw from her port which wasn't accessed yet. This was around 4:30 am. She said " but its in the middle of the night!" my thoughts exactly. :) So they proceeded to tell her she needed to hold still and not kick or put her hands down, not knowing how incredibly awesome she is at doing what she needs to and holding still. Add two more impressed nurses to the tally.
We didn't get much sleep last night cause she was puking a lot and in a lot of pain as well. her mouth and throat are bright red and raw and very painful, especially when she has to do her mouth care. I about started crying this morning watching her tremble in pain and still willingly open her mouth without a fight to do her mouth care.
I went and took a nap at the Ronald McDonald house when Brandon got here his morning, he slept there last night. I wish they would let both parents stay with her at night but I guess it's good for one of us to get rest. It seems he got here just in time for the worst of it and I know I would be so exhausted doing it all alone, I am so grateful he can be here.
Today they increased her pain pump doses and she is resting well for the last couple hours. they will try her food pump again and see if she tolerates it at all. If not they will start TPN tomorrow.

Day 0, AKA Transplant Day!!!

2010-09-24T12:55:00.000-07:00

Gracie keeps having a lot of nausea and vomiting so they turned off her feeds for a day or two. Her mouth is very raw now and will likely get worse as the days go by. So far she is still sucking her thumb but they say a lot of kids stop for good with the mouth sores. She doesn't complain of pain too much so the pain pump must be helping so that is good.
Ive had an emotional 24 hours. I think the stress caught up to me and having my husband here, I was finally able to let it all out. I am so grateful to have him. He is the only one who can understand how I feel. He will be here through Tuesday and come back next week. I mis my other kids so much and I'm grateful for my mom for staying with them.
The transplant itself is pretty uneventful. It took less than an hour. The man from the blood bank brought it in a big bucket of nitrogen and when he opened it, it made a little cloud like homemade root beer. :) then they thawed them out for a few minutes and hung it up like a bag of blood. now she smells like creamed corn. It is from the preservative they use, that makes the kids smell like creamed corn for about 24 hours. It is a really strong smell and fills up the whole room. It gave me a pretty decent headache. Lol, but she doesn't seem to be bothered by it. They say a lot of kids get nauseated from the smell.
tonight she starts her GCSF shots again that help with the white count coming back. She will have the shots for 10+ days. Now we are just stuck here waiting for her counts to return to normal which should take a few weeks. Things will get worse before they get better. After that she will have radiation for two weeks. They start that around day 42 if she is doing good.

Day -1

2010-09-23T17:22:00.000-07:00

Daddy came today and brought the tinker bell moVie shes been wanting. As soon as she saw him she said "tinkerbell" LOL. Followed by "I love you" I told daddy the trick I learned yesterday to get her to say I love you. Usually if you say you love her she says " I already know that" but when I do the I love you hand sign she says " I love you" too funny. So of course tinker bell went straight to the DVD player. It was a cute movie and she liked it. Then she did a lot of coloring and crafts. I went and bought her 4 new puzzles today and she keeps wanting to do them. She is very good at them.
she had to have the dressing changed on her central line today and she did awesome. They have to change the covering every week and it is painful cause it is really stuck on there. She is good at taking deep breaths and calming herself down. I told her she was going to be good at having babies someday. Then I realized she most likely won't have any biological babies if she even lives that long. You are born with all the eggs you have and all the treatments almost certainly have killed them all off. Oh well. That's the least of our worries. That is a conversation much much much later down the road.
Anyway, they put her on a pain pump today and it seems to be helping. Her mouth is starting to break down. Her bones hurt a lot and she has had a lot of nausea and puked up almost all of her feeds which have been going around the clock now. And only at an ounce an hour and she still pukes. She is on a few anti nausea meds. She is still a happy girl and brings a smile to everyone through it all.
Tomorrow is transplant day at 2:00, It doesn't take long and is much like a regular blood transfusion. I'll let ya know how it goes :)

Day -2

2010-09-22T15:14:00.000-07:00

Gracie is done with chemo forever!!!! So happy about that part. Last night and today she has had more pain and puking but she still continues to keep a smile on her face! She's amazing, I can't say it enough. :)
Today she has done a lot of crafts and coloring and painting. And puzzles, she loves puzzles. She has been catching up on sleep now that she has her ddavp again. She was actually snoring in the night and again right now. I love to watch her sleep, she looks so peaceful and angelic, maybe cause she IS an angel! :)
I sure keep busy with laundry even here. She brought three of her own sheet sets and usually goes through them all every day. Also her blankets, towels,clothes and stuffed toys and my clothes need washed every day too. It is nice that they have a washer and dryer for the families to use so the kids can have some of their own things from home. Right now in the BMTU there are only four little girls. 3 four year olds and 1 five year old. Not that they play together or anything. Lol
Brandon will be here in the morning and Gracie is so excited to see him. She asks for him several times a day. She is also excited he is bringing the new tinker bell movie that came out yesterday! She has been waiting forever for that movie.

Day -3

2010-09-21T11:06:00.000-07:00

Last night was pretty much the same, diaper changes every hour or more. Luckily she lets the nurses change the diapers during the night and let me get a bit of sleep. She will use the potty most of the time during the day but it gets tiring getting in and out of bed so often. her bone pain is getting a bit worse but the morphine helps a lot, the pain docs came by and said they can see about a pain pump in the coming days. the doc says the mouth and throat sores will start up in a couple days.
She had another chest x Ray this morning that came back clear so that is good. They are going to switch her formula to one with some fat in it again, just not a lot of fat. she is almost done with chemotherapy!!!! Last chemotherapy!!! Only 3 more hours, then she will have a blood transfusion since her hemoglobin was only 6.8 today. she has been pretty tired but it is probably from the anemia.
My back is killing me from sleeping on this crappy bed. I can't bend over at all. I am glad Brandon will be back on Friday to crack it for me. We miss him a lot. Gracie had me write a big list of things for him to bring from home. She is such a trooper.

Day -4

2010-09-20T12:15:00.001-07:00

Yesterday and today have been relatively boring, so that is good in this case! She has had a few episodes of nausea and vomiting but otherwise happy. Her bones have started to hurt and her central line site hurts a lot. She is on a lot of preventive pain meeds to get a head start on the pain that is to come. At home she took methadone every day. 1 mg twice a day. Now she is taking 2 mg 3 times a day and still asks for morphine about 3-4 times a day, that can give you an idea of her pain so far.
Overall, she looks good and is fairly happy. She hasn't had another dose of ddavp, because her sodiums have been steady at 142. They are doing good with monitoring her urine output and adjusting her iv fluids accordingly every four hours. This seems to do the trick and she isn't as thirsty either. The only downside is her peeing every 30-60 minutes around the clock. Only 27 more hours of chemotherapy to go and then we can get a more normal schedule for that.
We've been watching a lot of tv and there are a ton of toy commercials on, and almost everyone, she says she wants it! Lol. Or if it's for boys she will say " maybe Shad would want that" or " do you think you should get that for baby Von?" and the fashion Barbie every time she tells me Chloe wants it for Christmas. She sure is sweet. She misses her daddy a lot and asks for him several times a day. Next most would be her sister Chloe. Chloe is such a good sister to her and so sweet to her.

Day -5

2010-09-19T07:39:00.000-07:00

Gracie got her quarter dose of ddavp and it helped a ton. She hasn't been thirsty since then and the puking stopped as well. I think the quarter dose might be the right fit cause she is still peeing out what they give her by iv but not peeing out too much and not terribly thirsty. They will give her another dose when her sodium is over 150. Her blood pressure has been lower though so they drew some labs for blood cultures just to check but they said she looks good other than that.

Day -6

2010-09-18T16:35:00.000-07:00

Gracie had a long night with drinking and peeing because she didn't have her DDAVP. the nurses come in every hour and each time she had wet through the diaper on the bed. They made layers of pads on the bed so they could just take off the top layer and not have to change all the sheets each time. She drank a ton all night and didn't get much rest. Same thing today. This morning her blood glucose was 294( normal is 60-115) and her sodium was 147( normal is 135-145) They tested a few hours later and her sodium was 157 and glucose was 444! They said it is from the steroid she had yesterday called dexamethasone. It is five times more powerful than prednisone. She is supposed to take it the first three days but they decided to not give it today and see if it helped. The next time they tested her blood was at 5:00 and her blood sugar was down to 206 and sodium was up to 159. They decided that she was still peeing out too much even with all the iv fluids and her drinks. So they just gave her a quarter dose of ddavp to help. We will see how it goes and what the numbers do. They will also check her blood sugar through the night and if it is still over 200, she needs some insulin. They said this isn't uncommon with this steroid and the high glucose will go away soon. Only some people have lasting diabetes from it. I'm hoping it will go away but I was getting nervous this morning when they first told me, since my little brother has had diabetes since age 6.
She has had a lot of vomiting today as well. She is in pretty good spirits today though and we made a little craft hand puppet. She is pretty tired and hopefully she will get better sleep tonight now that she has had the ddavp.
I have been impressed. With the nurses we have had so far so I am happy about that!! :)
26 hours down and 70 to go!

Day -7

2010-09-17T16:52:00.000-07:00

Brandon stayed the night with Gracie and I stayed at the RMD house because only one parent is allowed to stay the night. She had a pretty good night and no puking so that is good. I woke up this morning anxious and thought" am I really ready for what is to come?"
I know we can only go forward, this is what we have been waiting for to rid her body of any lingering cancer cells.
This morning Jim and Paul from hug works stopped by the room to sing to gracie. She loved it. Hugworks is a nonprofit organization that provides music programs and recorded resources for children with special medical and emotional needs. It definitely lightened the mood and brought a smile. They have been doing this for 29 years. Go to http://www.hugworks.org

A Brief History of Hugworks ®

Jim Newton was the founding staff member in 1981 and began what was originally named Celebration Shop, a 501(c)(3) not-for-profit. Celebration Shop supported tours to churches, schools and colleges, providing programs for youth and young adults. In early 1983, while on tour in Ohio, Jim was invited to sing with children at Columbus Children’s Hospital. He had never used his singing voice and guitar in the hospital. His experience that day put both him and Celebration Shop on a new life course, as Jim’s own personal words tell you here:

"I felt really awkward and inadequate to be singing with hospitalized children, never having done so before. And though the lobby setting with about 20 children gathered - some in wheelchairs or on crutches, some coming under their own power, and a couple in hospital beds - went okay, I really felt my repertoire fell far short of what the children really needed.
Just as I was putting my guitar away, a nurse asked me if I would go to a room to sing for a little four year old boy (we’ll call him Toby - for purposes of family privacy) who was too ill to come out with the other kids. I agreed and she escorted me to his door. When she introduced me to this precious child and his Mom, she said, ‘This is Jim, he sings and plays guitar, and he’s going to make you feel better.’ Talk about feeling awkward and inadequate! Here I was with a very few, if any, real children’s songs - singing with a very ill little boy and a Mom worn out from countless days and nights of her hospital vigil - and I’m supposed to make them feel better!?!
As the nurse disappeared out the door, I started to play and sing. I don’t remember exactly what song I did, and after the song was finished we just looked at each other in a tense silence - no claps, no smiles, no words. So, not knowing how to gracefully excuse myself, I began another song. In just a minute or so, I noticed that Toby was on the verge of a smile - just a hint around the corners of his mouth. And so I immediately started another song. Almost instantly, Toby broke into a beautiful grin and began to clap his hands together, totally out of rhythm but absolutely and perfectly wonderful! His Mom looked around at him in amazement and began to quietly cry - huge teardrops streaming down her face. That’s all it took for me! I began to cry too, but I kept playing and singing - and Toby kept smiling and clapping!!
I visited with them for a few minutes, and when I had to go, Toby’s Mom walked me to the door. She said, ‘I don’t believe we’ll take Toby home from the hospital this time. I think we’re going to lose him. But you gave us so much today. He hasn’t smiled like that in weeks, and he’s never clapped his hands to music that way! Thank you so very much!!’
As I walked down the hall, something inside told me this was where I belonged. Music and singing had always been so healing for me. Perhaps I could pass it on to children and families who needed songs of the heart.”

Gracie has been very grouchy today but has been eating pretty well and only puked once today. Every time she is sad or grouchy I ask her if she is hurting but she just says " I'm just mad/sad that daddy went home, that's all" finally when her pain is too much she will admit she needs something for it. I don't know why she won't admit it or ask for pain medicine. She knows it makes her feel better. I don't know if it makes her feel funny or something.
They were going to start chemo at 1 today but her urine specific gravity was too high because she had had the DDAVP this morning. So it took till about 4 pm for it to come down to where they wanted it. They are going to try to go without any DDAVP these 4 days so her kidneys aren't holding onto all the chemo. I think that is an ok idea as long as she doesn't get terribly thirsty. We will see how it goes. She has only been needing it once a day lately anyway. They started the chemo at 5 and it runs for 96 straight hours around the clock. Wow! When I think of how awfully sick she was on 3-5 hours a day chemo, it is hard to imagine how much worse this will be at 24 hours a day. The dose is much higher also, I hate watching this poison enter her little body drip by drip. But I am glad there is such a thing. I can't exactly hate it if it is helping her. It is a fine line.

$12 Challenge/Cook book fundraiser

2010-09-16T21:08:00.001-07:00

Keri here with another challenge...a $12 challenge this time. It's been exactly 6 months since the $10 challenge so it must be time for another! Brandon's cousin MaryJo put together a family cookbook in Gracie's behalf. It contains favorite recipes of many family and friends of Gracie's. So here' the challenge Donate $12 to Gracie's fund through the paypal link above and we'll send you one of the cookbooks. Killer deal right? $10 from each cook book goes towards gracie's care (2$ for shipping). Make sure the address you put on the paypal donation is the address you want the cookbook mailed to and please make a note of "cookbook" so we know you want one. There are 200 cookbooks to sell! Who's up for the challenge???? On your mark, get set, GO!

Address at Cook Children's

2010-09-16T16:46:00.002-07:00

Gracie Bloxham
C/O Cook Children's Medical Center
801 7th Ave
Fort Worth, TX 76104

Day -8

2010-09-16T16:03:00.000-07:00

This morning Gracie had surgery to place a double lumen central line. She did really well with it and after that she had an EGD to scope her throat and esophagus to see why she keeps throwing up everything. They found that she had a severe esophageal stricture. Toward the bottom the opening was so small, a pen couldn't even pass through. This is why she would puke up bite by bite, it couldn't go down to her stomach. She has been so hungry this week and wanting to eat and it has been so frustrating for her. The doc did a balloon dilation to widen the opening and she was a lot better after that. She had a barium swallow done to make sure everything was good and it is, she ate two bowls of cereal and some applesauce. We are now in her BMTU room that she will be in for the next month or longer. Today is called day -8. Transplant is considered day 0 so right now we are counting down. Tomorrow she starts her Intense chemo and it will run for 4 days around the clock. she has to have a daily bath and physical therapy, she also has mouth care 4 times a day, she just had the first mouth care and she wasn't too happy about it but of course she did it and held still like always. The nurse was so impressed cause they have to hold kids down all the time. They were so impressed with her during the barium swallow as well. She just amazes everyone. she is in pretty good spirits so far but I can also see a lot of anxiety. She is so smart and doesn't miss a thing. I also try to explain everything that is going on so there are no surprises. today is daddy's birthday and he will stay the night with her tonight and leave tomorrow afternoon to head home for work. It has been so great to have him here with us. He will come back next weekend.
The unit here is pretty nice and they bring a food tray for the parent when they bring her tray as well. She is on a low bacteria diet and has to eat her food within 30 minutes from the time they bring it. Her food is made fresh when it is ordered so she isn't allowed to eat off the parent tray cause it might not be as fresh. :) we have already watched sleeping beauty, tinker bell, monsters Inc and my little pony and she did some puzzles.

Here we go

2010-09-15T15:38:00.000-07:00

Gracie's chest XRay was clear on Monday! Thanks for all the prayers. They said it actually looked better than the chest XRay that was taken on Thursday after the chest tube. All of her other tests came back okay too and so insurance has approved her and her doctors have cleared her for transplant. She goes in tomorrow. She will have surgery in the morning to put in a central line and also they will scoper her throat to see what the problem is there. After that she will start Myeloablative chemo to completely destroy her bone marrow. This will go for 4 days. After that she waits 3 days to give the chemo time to get through her system. They don't want the chemo still working or it would kill the new stem cells. So they wait a few days to give it time to leave her system. After the 3 days she will receive her own stem cells that were harvested months ago. Then it's a waiting game. It takes 7-21 days for the stem cells to engraft and show they are making new blood. During all this time she will have no immune system at all. She will be in the BMTU (bone marrow transplant unit) which is isolation with strict hygeine and cleanliness precautions. She will have to have blood and platelet transfusions and will get infections and mouth sores. They said the mouth sores are so bad their mouth looks like raw hamburger meat and even explaining it that way doesn't prepare you for how bad it really is. She is at risk for organ failure and infections of all kinds. I know it is going to be bad from what I've heard from other parents but even those who have gone through it with their own children say that you can't describe it in words. So the thoughts keep coming into my mind,is this really worth it??? But the benefits far outweigh the risks and anything to help our baby girl live and be healthy is what we will do. We have no other option. I will beposting almost every day. I'm sure it's not going to be the greatest news but it is more of a journal to keep track of things while I am in there with her.I miss my other kids so much already and it has only been 4 days. I just bawled kissing my baby Von goodbye. He changes so much every day. Please continue to remember our family in your prayers but especially sweet Gracie girl. Xoxo Lisa

World's Toughest Kid

2010-09-10T08:02:00.000-07:00

Granpa and Grandma Bloxham came for a visit and brought Gracie a trophy that says "World's Toughest Kid" Gracie Bloxham. She LOVES it! What a sweet idea! She likes to tell everyone about it. She is so so strong and courageous!

G is for Gracie! She loves practicing her writing and doing her "school"

This was Sept &th. check out all that new hair! it is growing in quite dark this time. We were at the store and there was a lady that said "I like your pixie haircut. so cute" I think she was totally serious. :) lol.

anyway, the second week of chemo went ok. She was still puking a couple times a day except for the few days she was on emend. Last weekend we went down to the great wolf lodge with the whole family and grandma and grandpa. It was a lot of fun. We were only 40 minutes from ft worth for our appt on tuesday so Gracie and I drove over early tuesday morning while the others checked out and drove back home. Tuesday she had her echo and /ekg and then a clinic visit for labs. The doc was so happy to see how good she looked and that she was smiling and walking and talking. Wednesday she had a CT scan that showed more fluid on the left side, so they scheduled for a thoracentesis/chest tube for the following day since she was going to be sedated anyway for the Bone marrow biopsies.

Thursday she had an MIBG scan and then the other things. The surgeon said it wasnt the same clear fluid as last time, it was milky white and that means it was coming from something else. they call it chylothorax. basically the white fluid was fat leaking from the lymphatic system. now we have to change her diet to low/no fat and they gave us a new formula.

We go back down next week and they will do a chest x ray monday. If there is no new fluid then we can proceed with our original plans of stem cell transplant. if there is new fluid, we will have to manage this another way with drugs/more surgery and do another round of chemo before transplant. We are hoping and praying for no more fluid on mondays x ray.

any prayers are always appreciated. :)

google chylothorax

Round 7 chemo (round 2 low dose chemo)

2010-08-28T13:38:00.001-07:00

Gracie has started growing hair again. and eyebrows and eyelashes. :) she looks darling.

She started the second round of the low dose chemo on Monday. She did pretty well with it with only vomitting 1-2 times a day. She didnt gain any extra weight this week but is holding her weight, right around 31 lbs. I am on my own, so to speak, with the kids so I had people watch the baby this week while the older two were at school and Brandon was working. Im so grateful for everyone pitching in to help, and I hear he was a good boy, so that makes me happy too.

last night Gracie and cHloe had a sleepover here with the neighbor girls. Gracie got to take the night off from the milk pump and be a regular kid. I slept on the couch. In the middle of the night, I woke up and noticed her sleeping on her tummy with her bum in the air like she used to sleep. I bet she misses good sleep, the same as I do. She has to sit semi-upright every night while sleeping so she doesnt puke while her feeds are going. shes a tummy sleeper like her mama so it is annoying to her. I remember not getting to sleep on my tummy when pregnant and i hated it, so i can relate in that aspect somewhat. I felt so rested getting 6 straight hours of sleep last night! :) Tomorrow Brandons parents are coming and will stay a couple weeks. after, that, my parents will come. It has been nice having our own family time these past 4 weeks, but i am ready for the help again and we miss them. :)

Gracie has one more week of chemo, then the week of the 7th we will be back in ft worth for scans again, the scans have to be within 30 days of transplant, so we have to re do all of them but the audiogram. as soon as all the scan results are back and approved by insurance, she will start the stem cell transplant, probably sometime the week of the 14th. Im SO not looking forward to it, but SO ready to have it over and done with.

round 6 chemo (round 1 low dose chemo)

2010-08-24T15:02:00.000-07:00

The low dose chemo is 2 kinds of chemo the first week, 1 kind of chemo the second week, and the 3rd week off. The first week we did in Ft. Worth so they could get a daily weight and better monitor her nutrition and health. She did fairly well with the first week and went from weighing 12.6 kg to 13.2. They let us come back to Tulsa for the rest of it and for the second round of it as well.

Brandon, my husband, was able to be there the whole week in Ft. Worth so it was fun to have it just be the three of us. We went to the movie one night, Olive Garden another night, the zoo, and some stores. just anything she felt like doing.

I love this shadowy picture of daddy and Gracie at the zoo. :)

The next week that we were home we spent a day at an amusement park nearby as a family, Gracie loved it and rode a lot of rides. It was great to see her have fun and not just sit on the sidelines.

Gracie recieved a wig from Http://www.childrenwithhairloss.us free of charge. She was SOOO excited, and had a huge grin on her face. She immediately asked for a brush to brush her hair. This website is different from other hair donation sites. They donate to all kids with hairloss, not just low income or those with permanent hairloss. I will definitely send my future hair donations to them and suggest you do as well, if you are ever donating.

A beautiful evening last week to spend time outside and draw with chalk.

Our original plan was that Gracie would be starting pre-K this year, and riding the bus with her big sister, but cancer came along with its own plan. We got her some workbooks for her to have "homeschool" and she enjoys working on her writing.

This picture is from today. Gracie just started the second round of the low dose chemo yesterday and she weighed 14.4 kg. which translates to 31.7 lbs :) she has gained 3.75 lbs in the last three weeks and we are thrilled. She is on the milk pump around the clock to gain weight and it looks like it is working. She doesnt feel like eating still, and if by a rare chance she does, it usually tastes bad and she spits it out. Im so grateful for that g button!! :)

taking a nap at clinic today.

amazing Gracie pins made by Beans Things. love "em!

scans

2010-07-31T10:46:00.000-07:00

I dont know why this picture posted so small. She was playing pretty pretty princess that she got for her birthday from our friends last saturday.
Sunday was her actual birthday and we drove down to Ft. worth to be there for scans on Monday.
Monday was the bone scan which took 20 minutes. they wanted to put her to sleep for it because they didnt think she could hold still. I told them she would and has done it many many times. WThey were surprised and so impressed with her. They said "shes amazing" also because she did so well with her port access. they had 4 people around her trying to hold her down and she started crying. I told them she will hold still without them touching her and she did. they could hardly believe it because almost all the kids struggle and scream. NOt that i blame any other kid for doing so!!! I would totally fight too. :) She is just amazing that way, and many others.
The bone scan results were NORMAL! :)
Tuesday she went to the clinic for them to draw some blood. She had some IV fluids because she had been puking the previous nights. all of the blood tests were NORMAL! :) after the fluids she didnt puke anymore.
Wednesday she had an Echocardiogram, EKG and hearing test. She held so still for these as well. I never heard the results from the heart test. The hearing test was normal with her left ear a bit worse than the right. also moderate hearing loss with high frequency hearing. They said if she was at school they would test her for the normal test and she would pass. they dont test the high frequency at school. They said high frequency is not in a lot of regular speech. they will monitor her hearing as things go along but she doesnt need any hearing aids or anything at this point.
Thursday she Had the CT scan and MIBG scan. the CT was about 10 minutes and the MIBG was 60 minutes. she fell asleep during that one but held still the entire time. Both of these scans showed NO EVIDENCE OF DISEASE! the chemo and surgery did their job! we are very happy.:)
The one thing the cT did show was that her left kidney has little if any function,.because of the tumor being attached to the kidney and all the pulling and tugging the surgeon had to do to get the tumor off. There was also some free fluid in the abdomen.They said function probably wont return to the left but it is possible. it will probably just shrivel up. They didnt feel like she needs surgery to take it out since her blood pressure is good and her renal panel was good.

Thursday she also had bone marrow aspirates and biobsies on her lower back. She was of course put to sleep for that. we dont have the results for that but they anticiapate no surprises there either. :)

Sfter she woke up her blood sugar was 55 from not eating for 24 hours. so she had some juice and a popcicle and they let us go.

Friday we went back to the clinic where we got all the news from the scans. The original plan was to start stem cell transplant next week. Her Dr. said she looks great on paper and everything on paper says to go ahead with it but looking at her she is pretty medically fragile and the doc felt like we might run into big problems since transplant is so incredible intense and hard. The new plan is to do a couple rounds of a low dose outpatient chemotherapy. 2 weeks on 1 week off, twice. This will put her transplant to mid to late september.

We are doing the first week down in fort worth so we can see the Dr. everyday and get a daily weight. We are being very aggressive with her nutrition in hopes we will fatten her up before transplant to give her a better chance. She is on a new formula that is easier to digest so hopefully we can increase her feeds a lot. The low dose chemo usually doesnt cause nausea so they say a lot of the kids will really do well on it. This is our hope for Gracie that she can gain 5 pounds in 6 weeks. :)

Thank you for your continued prayers and please pray for her to not be sick and be able to gain the weight and be happy and playful.

Happy Birthday Gracie!!! 4 years old!

2010-07-24T16:42:00.001-07:00

We started a week of celebrating on Wednesday after we got home. We went to Incredible Pizza for dinner. Gracie only rode one ride and didnt eat a bite of food. but she says she had fun.

Gracie the birthday princess! She was excited to wear her princess things. We went to Walmart about 5 times this week and every time she chose a new toy. lol. I figured it was the same as paying for a party and people bringing her presents. AT first she said she wanted to invite some friends, but as time grew closer, she said no, she didn't. She has been very tired and grouchy this week, but who can blame her, other than that, she has been doing really well and healing well from surgery.

Opening some gifts. LOVE that smile!!

Home

2010-07-23T18:41:00.000-07:00

I wanted to repost these pics bigger since we are home now and i have a computer. :)
This is Gracie after surgery, she had 9 lines, after a couple days they took some out, but she had 2 new ones with the oxygen and the chest tube, so 11 all together throughout.

She managed to find her thumb after about 2 days, with all that stuff on her hand.

on the drive home.

We came home on tuesday. We left the PICU on monday and she stayed overnight on the surgery floor and they released her at 4 pm so we made it home at 9 pm. Brandon had to leave on saturday and I had a really frustrating time from sunday night on. I was really worked up over a jerky nurse she had sunday night. I never knew I was capable of being so angry. :) anyway, I dont even want to get into the story, i am trying to get over it. lol. we did get a new nurse, and that helped a lot. long story short. Ive never been talked to that way.

I hope I have sorta learned a lesson to not get worked up over stupid people and save my energy and emotions for what matters.

Gracie and I will head back to TX sunday so she can be there monday morning for her bone scan. she has scans all next week. Her birthday is also sunday so we are celebrating it tomorrow.

Beans Things ....proceeds to Gracie

2010-07-20T12:09:00.000-07:00

Beans Things has some great creations like these magnets designed for Gracie. Check out her artfire site. She has a section for Gracie where 100% of proceeds from those purchases will go to Gracie. I LOVE the magnets I got. She has some great pendants too. check out her artfire site here.