Clinic

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

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

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!

Curesearch walk Sept 24 2011

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!

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

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"

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)

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!!

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

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

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

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

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

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.

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

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

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

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!

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

clinic

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!

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

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)

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

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

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.

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

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

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.

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