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

Wednesday, March 30, 2011

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!

Monday, March 28, 2011

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

Saturday, March 26, 2011

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

Sunday, March 13, 2011

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.

Friday, March 4, 2011

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

Wednesday, March 2, 2011

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