HOME

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!

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

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

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

PICU (again)

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

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

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

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

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

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

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

Still doing great. day +43

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 :)

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

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

Breaking out of the hospital

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

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

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)

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

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

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

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

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

Scentsy buddies fundraiser

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

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

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

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

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

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.

I

Day 1

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!!!

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

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

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

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

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

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

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

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

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

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

Day -8

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

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

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)

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.