Doing Well

Sorry I have not posted in so long.  I took a break from the blog this weekend but meant to post again on Monday.  We have been so busy since getting here that I haven't had time.

We arrived Monday night and are staying at the Grizzlies House.  It is very nice-like a hotel.  We have a suite that has a living area and a separate sleeping area.  It has a playroom and playground and a dining room where they have special dinners for the guests sometimes.  

Everyone has been great here.  It is like a small community.  All the other parents have been helpful getting us around and adjusted.  We met with lots of people yesterday and it was a bit overwhelming.  The hospital is very nice-happy and bright.  Good cafeteria.  Beautiful outdoor areas.  We really love it here so far.  

Today we are having an MRI.  I am actually in the waiting room right now.  It is supposed to start at 1:15.  She already had her IV placed this morning and she was so brave!  So the bad part of the day is over and we are on to the easy stuff.  

All the waiting rooms have play rooms with games, crayons, video games, etc.  This waiting room has a huge fish tank.  Like I said-very nice!  They take care of you here for sure.  They think of everything.  It really helps to have some of the burden to be carried by them.

Abby is a little upset about being back at a hospital but it helps that we get to go to a "hotel."  Yesterday was really tough on her (actually all of us) but she seems better today.  It is surreal to be here.  St. Judes is for other families-not for us.  I guess I am still in a little denial about all this.  Another mom told me yesterday that this will become our new normal and this will be our second home.  Hard to believe this could ever be "normal."

We think we will get to come home tomorrow night but we are not sure yet.  Pray for Abby and for us!  We love you all!

It's Not Gliomatosis Cerebri!!!!!!!! YEA!!!!!!!

I talked to St. Jude late this afternoon and they confirmed that she does not have gliomatosis cerebri!!! It is not oligodendroglioma either. It is a grade 1 glioneuronal tumor. The brain tumor coordinator said that it usually responds well to treatment and that it is a much better diagnosis than gliomatosis cerebri. The usual treatment is low dose chemo but we will sit down with a neuro-oncologist next week and discuss all the options and decide on the exact treatment plan for Abby.

I never thought I would be so excited that my child has a low grade brain tumor!! God has truly worked a miracle in our lives! Praise God!!!

"Thou art the God that doest wonders: thou hast declared thy strength among the people" Psalm 77:14

Thursday, June 4th

Abby is staying the night with Granny tonight. I am excited that she is back to normal-not wanting to be home! I miss her though. She woke up in a good mood this morning and was happy all day. Her head is still swollen and the steroids have caused her to gain quite a bit of weight. Tonight was her last dose of steroids! Yippy! Hopefully that will help her to look more like Abby again. Hopefully I will hear from St. Judes tomorrow. I will post it as soon as I hear! Pray tonight that it will be great news!

"Now faith is the substance of things hoped for, the evidence of things not seen" Hebrews 11:1

Benefit Yard Sale

I wanted to let everyone know that there will be a benefit yard sale at the Pediatric Day Clinic (across from the Mickey Mouse pool) on Saturday, June 6th, from 7am to 1pm. If you would like to donate items you can bring them tomorrow or on Saturday. Or you can just stop by and shop! The proceeds will go to Abby and also to Kenny Goodman, who was recently diagnosed with cancer. His sister, Sandra, is an employee of the Day Clinic.

Thank you PDC for doing this for us! I love you all!

Wednesday, June 3rd

I should be at church right now! Both girls fell asleep right before church so I stayed home with them. Abby spent all day with her Aunt Wendy and was worn out! She slept really good last night and woke up in a great mood. She hasn't been wanting to go anywhere but not long after she woke up she said she wanted to go to Aunt Wendy's house. Wendy said she was great all day-very happy and talkative. I think she needed to be away from mama for a while! Lyla went to daycare for a while and I got to catch up on some errands. My "to do" list gets smaller every day! I am getting very anxious for St. Jude's to call with their final path results. Call already!!

A lot of our church is at church camp this week and so far 6 youth have been saved! YEA! It is so exciting that so many young lives are being changed! Hopefully I will get to take Abby next year. I think she will love it!

Pray that Abby will keep recovering so well! It is so nice to see her playful and happy again!

Tuesday, June 2nd

All went well today! Dr. Boop thinks Abby looks great. Her incision is healing nicely-no sign of infection. He said the swelling will come and go for a while and the lack of sleep is common in patients. He is pleased with her progress. I feel a big relief! I figured everything was ok but it's nice to hear someone who knows tell you that everything is ok. While in Memphis we took Abby to see the movie Up! She had a good time and laughed a lot!

We have started weaning her off the steroids-thankfully! She is eating everything in sight and has trouble controlling her emotions. She rides an emotional roller coaster all day! I feel sorry for her b/c I know she doesn't understand what has happened to her and why she feels so bad. We do our best everyday to help her through it but sometimes we don't know what to do-how many hot dogs should you let a kid eat!?! She threw the biggest fit in a store today and I wanted to stand up and tell everyone that she is not normally like this-she had brain surgery! Every day we face new obstacles but God also places numerous blessings in the way too!

"Trust in the Lord with all thine heart; and lean not unto thine own understanding" Proverbs 3:5

Monday, June 1st

Just wanted to let everyone know we will be going to Memphis tomorrow to see Dr. Boop. I called today with concerns about her swelling-its not worse but not better either. I am also concerned about her not sleeping well. I really think everything is ok but I don't want to take any chances. He wanted us to come to his office and see him-I figured he would. Our appt is at 7:45 am so we are leaving early in the morning. Pray that everything will be fine with her incision and swelling and that there is some easy solution to the sleep problem. Also pray that we will have a safe trip to Memphis tomorrow.