My beautiful niece Gracie was recently diagnosed with Neuroblastoma (cancer). It is still early in the diagnosis and we are awaiting results to know more about the fight that Gracie will face. I've created this blog as an outlet for friends and family to stay informed about her journey and a way for friends and family to make anonymous contributions towards her care and the mounting expenses her family will face. Gracie is a fighter and the bravest 3 year old I know. Hundreds of people love you Gracie and are praying for you. "Be strong and of good courage for the Lord thy God is with thee" Joshua 1:9

Saturday, July 31, 2010

scans

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.


Saturday, July 24, 2010

Happy Birthday Gracie!!! 4 years old!

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!!


Friday, July 23, 2010

Home

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.

Tuesday, July 20, 2010

Beans Things ....proceeds to Gracie


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.


Sunday, July 18, 2010

Amazing Gracie

Uncle Matt wrote this song for Gracie. Check it out. Gracie is truly Amazing!

Friday, July 16, 2010

Update

Here's another update from Lisa (still at the hospital)

Gracie is still in the PICU and will be for atleast a couple more days. Last night Gracie was in a lot of pain even with the epidural and morphine. Then they realized there was a kink in the epidural so they tried to pull it out a little and straighten it out but it still didn't work. They took it out and gave her a pump where she can push a button when she is hurting and it will give her medicine. She was also having a lot of trouble breathing and they did a chest x-ray and found a lot of free flowing fluid around her left lung so the did a chest tube to get it out. They got a half liter out and did another x-ray that showed fluid on the right side, presumably from her laying on her right side for the procedure. So now she is on a suction tube and laying on her left side to get the rest of the fluid out.

She is quite swollen from all the fluids they have been giving her and it is hard for her to even hold a pen but she wanted to draw her grandma a picture. Here is a video and her determination. She never gives up, she has always been our most fiesty child. She is a fighter and that is why she is going to kick cancer's BUTT!!!! :o)

video of gracie drawing

Wednesday, July 14, 2010

Surgery went well!



Gracie went in for surgery to resect her tumor on Tuesday June 13th. She was very nervous but glad they were taking that stupid cancer out! She asked the surgeon to flush it down the toilet. He said he thought that sounded like a good idea. That got a smile out of her :o)

The surgery took less than 5 hours. The surgeon was pretty confident he got it all. He said it was as hard as a rock so the chemo was doing it's job well. They were able to save the left kidney but it has some little bits of calcification left on the top of it which may or may not be in an issue in her future. He didn't seem too concerned about it. When surgery was done they kept her intubated because she was having blood pressure issues etc. so they took her to the NICU where they watched her overnight. They took her tube out around 11pm and she has been asking for "just a litte drink?"! They don't want her to drink because she still has the ng tube sucking out her stomach. I think her mouth is just very dry from being intubated. He diabetes insipidus is being well controlled with vasopressin in the IV.

Before they took out the breathing tube she had 9 tubes or lines in her. Now she has 8. Her power port, ng tube, g button, arterial line, 2 18 g peripheral IV's, foley catheter and epidural. The epidural is controlling her pain and she is resting pretty well for the most part. She had an incision all the way across her tummy from left to right. They also took out the old g button and made a hole for the new one.



Thanks to eveyone who has prayed so hard for her and our family. Please continue to pray for a speedy recovery so she can enjoy her 4th birthday in 11 days! :o) -Lisa


Lisa asked me to post the above... She is still at the hospital so she doesn't have her computer. I took the pictures off her facebook page so they are tiny. Here is Gracie before surgery. AmaZinG Gracie we all LOVE YOU!! -Aunt Keri