Week In Review

We spent the week trying to stay cool and have fun. I am trying to get our household back on a routine. Lyla is having separation anxiety so I have spent a lot of time reassuring her that I will not stay in the shower all day!

Abby is doing great. She talks non-stop and run around like crazy! She loves playing in the sprinkler outside-she would stay outside all day if we would let her!

I wanted to let you all know that I resigned from my job this week. I want all of my co-workers and speech families to know that I will miss you all but I plan to keep in touch. I really enjoyed my job and plan on going back to it some day. I just really feel that my place for now is at home with my family. We have no idea what tomorrow will bring for us and I want to enjoy every minute I can with my girls. One thing I have learned through this trial is to take life one day at a time. Enjoy the day, enjoy your life.

"Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof" Matthew 6:34

Our Week

We have had a busy week! Everyone is trying to get back in the groove of being home! I spent the beginning of the week trying to unpack and clean!

Thursday my mom and I took Abby and Lyla to St. Jude. We met with the neurologist who said her EEG looked normal but we would still continue the anti-seizure meds for at least 2 years even if future EEGs look normal. Chemo can sometimes increase seizure activity so it is safer to keep her on it until we know how she will respond to chemo. We actually had a good time at St Jude. We took a lot of pictures and showed my mom around. I was glad to take Abby on such a short day so she could see that it won't always be long stays with lots of tests.

Abby is back to herself. The swelling is gone and she is thinning up some. She is chatty Kathy again too! We have had a great week. Next week we don't have to go anywhere! No doctors or hospitals. For the first time in 2 months we get a whole week off!! Yea!

"I will praise the Lord according to His righteousness: and will sing praise to the name of the Lord most high" Psalm 7:17

Update

We are home and doing well. We came home Friday afternoon and are all very happy to have some "normal" family time.

The benefit Saturday night was fantastic! We were amazed at how many people came out to show their support. A huge thank you to all who organized it and worked!

Abby seems back to her normal self. She is playful, talkative, and always ready to go somewhere! Her incision is healing well and her swelling has gone down to almost normal. She is only having to take one medication now, for seizures.

We go back to St Judes on Thursday for a few appointments but nothing major. They couldn't fit everything in last week so we have a few more people to meet. I am glad we get to take her back down there and not stay the night or have anything big done. I want her to feel comfortable there and know that we won't always be there for a week and have IVs and tests. Sometimes we will just go for the day.

Our Diagnosis & Treatment Plan

Abby's diagnosis is an idiosyncratic low grade glioma. This basically means that it is an unusual, slow growing tumor. The best treatment for this is radiation. However, radiation in young children is very risky and can have detrimental side effects. Chemo is often used to stop the tumor until they become old enough to have radiation (age 10 and over is the best).

For now, we will cautiously observe this tumor. We will have another MRI in 6 weeks to see if there is a change. Then we will have them every 3 months. If at any time they see ANY growth or change she will immediately begin chemo. If it grows extremely aggressively we will have to do radiation.

Our neuro-oncologist told us to expect to have multiple rounds of chemo. These tumors do not go away, but you can stop their growth. However, they always start growing again. So MRIs and chemo and radiation will become a way of life for her. Hopefully hers will grow so slowly that we will be able to go a few years in between treatment.

So for now we get to come home and have a normal life for 6 weeks. Then hopefully we will get 3 more months of normal, then 3 more, then 3 more, etc, etc, etc. The longer we can delay chemo the better the chance that she will make it to age 10 before having to have radiation.

We really weren't told the long term prognosis but they speak to us in pretty optomistic terms, so although this isn't what we would have chosen for our life it could be much, much worse. We feel fortunate to be part of the St Jude family now and we know God will give us the strength to endure this long road. I know it will eventually become normal for us and she will never know life any differently.

I ask that Abby stay in your prayers. Pray that it will grow slowly and she won't have to have chemo until much later and that she would respond well to it. Pray for our family, that we will adjust to this new life. Pray for all the children at St. Jude-there are too many kids here. Pray for advancements in research that will lead to an end of childhood cancer.

God has provided abundantly for us during this time and we know He will continue to do so. We are so grateful to our families, church, and community for all that has been done for us.

"For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end" Jeremiah 29:11

Remember the Benefit

I wanted to remind everyone about the BBQ dinner and auction that will be held this Saturday at the Southside High School cafeteria. The dinner will be from 5-8, plates are $6. I think the auction starts at six and they have some amazing things to bid on. Cardinals great Pujols has signed some things and there are several unique NASCAR items that have been signed. If you know any Pujols or NASCAR fans be sure and tell them about it. For more details call Sarah at 870-613-3469. She can get you tickets or give you more info.

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.