Rough Time

Just a quick update for now since Lisa (Gracie's mom) is better with all the details and will write when she has time. Gracie is having a rough time and is back in the hospital with an infection. We are praying that she will improve soon since She is scheduled for surgery to remove the tumor on June 7th. She needs to be healthy enough for surgery. Please pray for her!! We love you Gracie!!

Round 4

I saw this picture on another blog and loved it. It is how I feel about the Savior. He is there for our comfort and peace. Especially little Gracie.

Gracie drew these pictures of mommy and daddy at the hospital.

A few nights ago, my parents brought the other kids up to the hospital to visit. Around the time they were getting ready to leave, the nurse came in and said everyone had to go out in the hallway because there was a tornado warning. We were out there for about an hour before they let us go back in the room. It was craziness. lol.

Gracie did sooo well with round 4 of chemo and came home yesterday! She weighs 31 lbs now and it is great that we have the g button to get her the calories she needs. She hasnt eaten in the last few days but it is just fine cause she hasnt puked either, so all the tube feeds stayed down. It is so nice to not have the stress of if she is eating or not. Gracie has a favorite nurse and she is pretty mean to everyone else. not that i can blame her, she has a lot of anxiety and pain. She is even mean to this nurse too but she is the only one she will really talk to or talk about. She wanted her nurse to push her in her car out to the car when it was time to go.

When we got home, daddy had finished the playhouse just in time, with some help from Grandpa. She loves it.

She will be home until the 3rd of June. That is when we will head down to Ft. Worth for scans to check the tumor size and get ready for surgery on June 7th to resect the tumor!!! hopefully the surgeon can get it all. after surgery she has round 5 of chemo. followed by a month rest and then the stem cell transplant, radiation and antibodies therapy. So, YES the surgery is a huge deal to get the tumor out but there are still many months to go afterward. We feel so blessed that this round went so well. So happy she can have a couple weeks home before sugery. PLease pray for the surgery to go well and for the surgeon to be blessed as well. xoxox

A happy week at home!

The home health people came and showed me how to do the pump for the night feeds. we started out at 60 ml/hr (2 oz) and now we are at 80 ml/hr for 12 hours. so she gets a good amount of calories just sleeping. She is still pretty sore where the G button is. It takes 4-6 weeks to heal and it hasnt been quite 2. She is a good sport. It is nice that she can take her oral meds through the tube now too. That part makes her very happy. :) She is starting to slowly gain some weight back and is now up to 28.5 lbs as of today. She seems to be getting some strength and energy back as well. She was up walking around yesterday and even crawled up the stairs to play in the playroom. I was looking all over for her and then my other daughter said "she's up here!" i said "who brought her up there?" and she said that she crawled up on her own. It made me nervous that she was doing that but also very happy that she is feeling well enough to play again.
We have been hammered with thunderstorms this last week and we decided it was a perfect day for play dough. not that she plays outside but she has been wanting to take rides in the car to walmart or anywhere so we were stuck at home for a couple days.
Tonight Grandpa and Grandma took us out to Incredible Pizza. It was a lot of fun and it was great to see some some smiles from miss Gracie before we head back in for chemo in the morning. This will be round 4 of 5. surgery to resect the tumor will be in between 4 and 5 probably the week of June 7th. That will be done down in Ft. Worth.

G button

Gracie had surgery yesterday to put in the g button. The surgeon was Dr. Lee and she did a good job. She did it laproscopically and made an incision but couldn't find her tiny stomach so she made another small incision on her side to hold up her liver so she could find the stomach easier. When she cut the stomach itself, she bled more than she would have liked for her to so they gave her platelets. She is doing well with it so farand they have started her on pedialyte through the g tube slowly at 10 ml per hour. They will start her on pediasure tomorrow and then a formula for continuous nighttime feeds.
She also had a fever today and bloody diareah so they tested it and she was positive for c- diff. Clostridium difficile [klo-STRID-ee-um dif-uh-SEEL] is a bacterium that causes diarrhea and more serious intestinal conditions such as colitis. So now she is on two antibiotics to get rid of that. Her spirits seem pretty good today but she is still very very thirsty. Trying to maintain a balance with sodium levels and hydration and managing her diabetes insipidus is a constant struggle and there are no easy answers. There are no documented cases of Diabetes insipidus and neuroblastoma. It is hard. We are hoping she responds well to the feeds and will come home soon.

In need of nutrition

We brought Gracie home Thursday night after chemo and she never really got her appetite back and was puking a lot. She started puking up everything she drank and yesterday we brought her back up to the hospital. She is down to 24.2 lbs. She will be 4 in July and she weighs 5 lbs less than my 14 month old baby. :( it makes me so sad to see her disappearing before my eyes. The doc came in today and said they are going to start Gracie on TPN again (IV nutrition) and they will talk to surgery about putting in a G button. She is also getting another transfusion today. Please keep her in your prayers. She is down 25% in weight from when she was first diagnosed 2 months ago and even then, she was underweight. :( My sister in law said that nobody can truly know how awful she looks until they see her in person. The pictures just don't convey the extent of it. We appreciate all the support from friends and family, my mother in law and sister in law were here last week and month and my mom is on her way tomorrow to spend this month. Tonight is the first night we have had to ask neighbors to watch the other kids because we have had family or Brandon able to be with them.
I am so grateful for that.