Great Day

Yesterday was a great day! The girls and I drove to Benton to meet Kellie Beggs and her kids, Kodi and Alyssa. Alyssa is 7 and also has a brain tumor. Her tumor is a craniopharyngioma. She had surgery in October 2008 but there is some residual tumor left. She has MRIs every 3 months like Abby. Kellie truly understands how I feel and it was so wonderful to sit down and talk to her in person. We have emailed each other for months, but there is nothing like a face to face conversation. We talked about all the joys and hardships of this journey and surprisingly, I didn't even cry! I was just so happy to talk to someone who I knew wouldn't think I was crazy!

The girls played together and compared surgery scars. I am glad Abby will get to know someone like her. I am glad she will know that she is not alone. I am glad I know that I am not alone! Kellie has been such a source of strength for me, and I know that God's hand was in our paths crossing.

I smiled the whole way home. Abby has talked about Alyssa almost non-stop. It was a great day!

Our Christmas

We had a wonderful Christmas. Our celebration lasted 3 days! We got tons of great gifts and just had a great time.

On Christmas Eve I made pizza and we drove around with our pj's on and looked at Christmas lights. We came home, popped popcorn, and read the Christmas story from the bible. It was nice to get to spend time with just us.

Christmas morning the girls were very excited to see what Santa had brought. Abby was so happy that Santa had brought her a baby doll, "He knew I wanted it and he got it for me!" Very precious. Lyla didn't really understand but she played and played.

We spent Christmas day with Jason's parents and siblings and Christmas night with my extended family. Yesterday we spent the day with my mom, stepdad, and siblings. It was so nice to relax with all of our family, eat lots of good food, and open presents. I was sad to see it all end. We do have one more celebration, next week we will go spend time with my dad's family. I can't wait to see all of them!

After church today the girls spent all afternoon playing in their bedroom with all their new toys. I didn't have to break up many fights or give out many snacks today! They were too busy!

I hope you all had a wonderful Christmas too. I feel blessed beyond measure!

Merry Christmas!

I can't believe that Christmas is in 2 days! Time goes by fast! I was waiting to write because I wanted to include a picture of the girls in their Christmas dresses but we still haven't managed to do that. I will post a picture of them after the holidays!

Abby is very excited about Christmas-she wants Santa to bring her a baby doll. Lyla is excited about the presents and bows! I have had to re-wrap several gifts and none of the presents under the tree have bows now!

Christmas is always a very busy time but I hope that all of you can find time to remember the true meaning of Christmas and to cherish your friends and family. Please pray for those who will not be with their families this Christmas. There will be children celebrating in a hospital room instead of their living room. Pray that God brings them and their families comfort, peace, and strength. Remember them when you feel stressed about all you have to do and all the places you have to go. I know that I plan to soak up every minute with my girls over the next several days!

At our church Christmas program, our beautiful and talented teen girls sang the song "The Gift". It has stuck with me all week long and kept my mind focused on the reason I celebrate this joyous holiday. I would like to share the chorus with you.

He was the Son God sent to one and all
Put on this earth to hang there on that cross
Born to die so we could live
He had the birthday, we got the gift

I hope you all have a wonderful Christmas!

We Saw Santa!

We went to the Christmas parade tonight and it was cold! The girls had a good time anyway. They especially loved seeing Santa at the end! We have our house all decorated for Christmas and the girls love the tree and lights. We are singing lots of Christmas carols too! Life is good around our house!

Thankful

We have had a wonderful Thanksgiving! And I am truly thankful to God that we got to spend the day with family and that we are all healthy. I am so glad that we are not in a hospital, not having chemo, and that we will get to enjoy the holiday season all together. I am thankful that God worked a miracle in our life and that He continues to bless us daily. I am thankful for my family, my friends, my church.

But most of all, I am thankful that God loved me enough to send His Son, Jesus, to take my place on that cross, to sacrifice himself for me. In one act of unconditional, inconceivable love, my sins were paid for, bought by the blood of Jesus Christ.

I hope that even if we were in a hospital, going through chemo, that I would still be thankful for that gift. I hope that no matter what happens in the future, I can still find thankfulness in my heart. I hope that I can always lift my hands in praise of our Creator and all that He has done for me. I hope you can too.

Cookbook to Benefit St. Jude

I have been searching the web often looking for healthy recipes that fit into our new diet. I have found some great websites but yesterday while looking up how to cook spaghetti squash I came across a blog that caught my eye. The author of the blog had compiled healthy kid friendly recipes from other blogs and made a cookbook as a fundraiser for St. Jude! You make a donation and download the cookbook and all the money is going to be given to St. Jude. How great is that! I am constantly amazed at how generous and kind people are.

I got a cookbook for myself and have already made something in it (it was the parmesan chicken nuggets and they were delicious). It's great and I wanted to share it with all of you. Go to www.simplysugarandglutenfree.com scroll down a little and look on the right hand side. There is a picture of the cookbook and a headline. You can donate any amount through PayPal. Go check it out!

What's New

Life has been good for us since returning from St. Jude. We are so happy that we get until February to enjoy-no chemo during the holidays! Yea! Everything got back to normal pretty quickly.

I have really settled into staying at home. It was challenging at first and I have had a hard time managing everything in the household but now I feel pretty good about it. I still have days when I feel overwhelmed but I am slowly learning how to balance the kids and cooking and cleaning and laundry. It has been much harder work than I anticipated! I am so grateful that I am able to stay home with them. I sometimes look at the clock and think about how different our lives would be if I were at work right then instead of at home.

The major change since we got back is in our eating habits. Before leaving for St Jude I had spent a lot of time researching nutrition and cancer. Jason and I both decided that for Abby and for the rest of us, a change in our diet was a must. After lots of reading and planning we are finally making the change to a healthier diet. We have cut out almost all added sugar and processed foods and have greatly increased whole grain, fruit, and vegetable intake. It has been hard at times and it has taken much more thought and planning but I feel much better about what I am feeding her and Lyla! We are eating as much organic foods as possible as well and are switching to organic chicken and grass fed beef. I am still drinking coffee with french vanilla creamer though and when we go to our family's house we eat what is there. Right now the goal is not to deny ourselves food but to replace the food. I don't want to burn out so if I really want some chocolate-I eat it. I have lost 8 pounds in 2 weeks so far. Abby and Lyla like most of what I have made but there has been some real disasters (chicken millet skillet-yuck)! I have thought about starting another blog about our meals but I just don't know if I have the time to maintain it.

Thank you all for your continued prayers!

Great News!

We are home from St. Jude and we received great news! The tumor has not grown! It looks the same as it did last time! We are so relieved!!!!!!!! Thank you God for taking care of us!!



Our trip couldn't have gone any smoother-thank you all for the prayers-I know they made a difference!

We ran a little behind schedule Monday morning but got there with no problem. She had an eye appt and PT and OT evals. Her vision has not changed (still 20/20) and her optic nerve looks healthy! The PT and OT both said she looked great so they are recommending no evals for a year unless I have a concern. She had to have blood drawn and she was so brave. We still have to hold her down but not like before. She was much easier to control this time. After those appointments we went to our clinic (E clinic) to get clearance for the MRI. They check her blood counts and listen to her lungs to make sure she is ok for anesthesia. The nurse, Lindsey, does a bunch of neuro checks to be sure there is no weakness, her eyes move together, balance, etc. Then we were done and had enough time to go to the zoo. She had so much fun! We only had 1 1/2 hours but we managed to see a lot! The goat she is petting in the picture was her favorite animal (I think b/c she touched it). It was a beautiful day and the zoo was so nice-trees changing colors everywhere. We went out to eat after and then went back to the Grizzlies House to sleep. It was a wonderful day and we felt so greatful for it.

Her MRI was on Tuesday morning. It went well except she did not want to wear the hospital gown. We had a big meltdown over that-so I put on a hospital gown and then she was fine. They put her under with gas this time, then started the IV. I was so glad we didn't have to hold her down again! They also gave her a different medicine b/c she has been coming out of anesthesia extremely cranky. It worked! She was so sweet this time when she woke up! After the MRI we went to our clinic to meet with her neuro-oncologist, Dr Armstrong. I spent the whole time crying-I was so embarrassed that I couldn't get it together. I guess all the stress and worry caught up with me. We got to have a good talk with him though and ask lots of questions. We really like him-he is so calm and reassuring. After that we ate lunch and headed home. Dr. Armstrong said he would call as soon as he knew about the MRI but it wouldn't be until evening more than likely.

Every time we heard the phone ring we got nervous. The ride home was hard b/c we just wanted to know! He called at 6:10 and gave us the good news. I bawled. I can't even explain the relief I felt. I am so grateful to God for giving us 3 more months. He has been so good to us!

Thank you all from the bottom of my heart for all the prayers! You just don't understand how much it means to us. Please continue to pray for her. This will be a lifelong fight for her. Please don't ever stop praying for her! I would also like for you to pray for all the patients at St. Jude. I am forever changed by the things I have seen there. There are so many families out there in such worse situations than us. There are so many brave little kids there. If you have healthy children, get down on your knees and thank God! Any time life gets you down, remind yourself of all the blessings that may seem insignificant. At any moment they can be taken away. None of the families there expected this to be their life. Pray for them all.

"Give thanks unto the Lord" Psalm 107:1

Thursday's Appt

I wanted to post a recent picture of Abby. Her swelling is gone completely and her weight is back to normal. Her hair is growing out and we got her bangs cut all the way across so it looks more like we planned on her hair being like that! This is the pumpkin we carved last night when we got home! We roasted the seeds and you would have thought they were candy! Her and Lyla both gobbled them up!

We went to St. Jude yesterday for a neurology appt. All went well (other than driving in the downpour). We just talked about her seizure medication, side effects, dosage, etc. We are going to reduce her dosage slightly and see if it helps with behavior and sleep problems. Hopefully there will be no breakthrough seizures and we can keep her seizure free on less medication! We took Lyla with us but Jason and I had a hard time listening and concentrating on the doctor with all the commotion! We decided it would be best to leave her behind when we go Monday and Tuesday. I really want to be able to give 100% of my attention to what it going on with Abby. I hate leaving her though.

Please pray for all of us. It was hard to go back after being gone so long. Those "I don't belong here" feelings were pretty strong! It's also hard to see all the other kids who are so sick-we are so fortunate but we know that at any time she could be one of those beautiful bald babies. Pray that the tumor will not have grown! I really want 3 more months of freedom!

Marathon/Appt

Just wanted to remind everyone to either sign up to join the Abby's Army marathon team or to make a donation to the team. If you are having trouble signing up (it is confusing) then call the phone number on the web page and ask them to walk you through it. It is not very user friendly!

I know most of you who keep up with us pray for us daily but I ask that you pray a little extra over the next few weeks. We go to St. Jude in one week for a neurology appt and we go on Nov 2 & 3 for our complete workup, including the MRI. Please pray that the tumor will not have grown and that we will get another 3 months of "freedom" from chemo. Pray for Abby since she will once again be subjected to long days and IVs. Pray that Jason & I will have patience with both girls and each other since it is stressful for all of us to be away from home. Thank you all for your love and prayers!

What she thinks and says...

Some of you may wonder what Abby thinks about all this. So I thought I would give you a little insight into that.

We told her back at ACH that she had a boo boo inside her head that she can't see and that doesn't hurt but makes her dizzy sometimes and that is why she takes medicine and why she has MRIs. She doesn't call them MRIs-she says they are taking her picture. We explained that the MRI machine is like a huge camera that takes pictures of the inside of her head and lets the doctors look at her boo boo. Honestly, she doesn't ask many questions about it. When she had surgery we told her that they would look inside her head and try to fix some of the boo boo. We answer any questions honestly but like I said, she doesn't ask toom nay questions. She does, however, talk about it a lot.

I thought I would list some of the things she has said:

"I like it when they take my picture. They give me medicine and I fall asleep and I snore and you give me a kiss."

"When they took my brain out it gave me a bubble head" (bubble head is what we called the swelling)

"I couldn't see out of this eye after they took my brain out" (b/c of swelling)

"Did I almost fall and you caught me?" (her version of one of her seizures, she has heard me tell it to doctors and nurses probably 30 times)

She also talks about God, Jesus, and angels a lot.
"When I had surgery, God sent angels to take care of me. I wasn't scared."

"God is talking to me. I think I'll read God a book." (thunder is God talking to her)

"Did God tell you to stay home and take care of your babies b/c I was in the hospital for so long?" (why I don't work any more)

"Angels carry you to heaven, mama"

"I love Jesus. I want him to come play toys with me."

"The Holy Ghost is a good ghost." (has been talking about ghosts a lot lately so we had a talk about the Holy Ghost and now that is what she always wants to talk about, the Holy Ghost!)

It always amazes me the simple love she has for God and Jesus. She sees them as real people who care about her. I am so glad that she understands that so young.

I love listening to her talk b/c I never know what kind of precious words will come out of that mouth. If I think of any more I will post them.

Please continue to lift her and our family up in prayer.

St. Jude Memphis Marathon Weekend

Join the Abby's Army marathon team! On December 5th, there will be the annual St. Jude Memphis Marathon with proceeds going to St. Jude Children's Hospital, where Abby receives treatment. There is a full marathon, half marathon, and a 5k run/walk. My stepsister, Tanya, and her husband, Brian, have formed the team and are trying to raise $2000 in Abby's name. You can register to run/walk or make a donation.

This is the link to the team page where you can make donations.
www.mystjudeheroes.org/abbysarmy

If you want to run/walk in Abby's name, go to http://www.stjudemarathon.org/ and register. Be sure to join team Abby's Army (under St. Jude Heroes).

Thank you Brian and Tanya! I can't wait to see how much you are able to raise!

How is Abby?

I get asked that question alot when I am out and about. I usually say "Wonderful!" which is true but I thought I would provide a more detailed answer here.

Abby IS doing wonderful. If you were to watch her play or talk you would never know what she had been through. The only "marks" are the two scars on her head, one of which you can't see unless you look for it. The other is more obvious b/c they shaved so much of her hair but I am sure that strangers think she got the scissors out and cut her own hair! I watch her play and sing and dance and feel that it is truly a miracle! The tumor is still there and will always be there but we feel so blessed that she is so normal right now and that there are no real side effects from the tumor or the surgery.

Usually what I leave unspoken is that her future remains unclear. All is great right now but we have no guarantee that it will stay that way. Chemo and radiation are more than likely in her future. The tumor is still very large and if it grows it could cause impairments. I know my God is bigger than all this and that if He says so it will never grow again-we are just not sure that is His plan for her.

Although God has blessed us abundantly, I still have days that I just don't understand all that has happened and when I have so many questions and not enough answers. I also worry about what the future holds for us. We truly do not know. I lay in bed and wonder if she will have to start chemo soon, if she will live a long life, and when and if the tumor does grow what side effects there will be. I trust that God will provide for us and will take care of her no matter what happens in the future-but the worry and fear is always there. When I feel overwhelmed by it (which happens often) I pray that God will help me through it and will replace that worry and fear with joy and thankfulness for this day, another day I have to hold her and talk to her and play with her. And you know what? God always comes through for me-the fear melts and the worry subsides. And I remember all He has done, that He is in control, and that He loves me and her. How lucky we are to have someone like that to go to in times of darkness!

Thank you all for your prayers and please continue to lift Abby's name up in prayer!

"Be still and know that I am God..." Psalm 46:10

Happy Birthday Abby!

Abby celebrated her 4th birthday one week ago today. She had a party at the Mickey Mouse pool last Saturday and loved every minute of it. We have been talking about that party for months and the thought of it got us through some rough times-IV sticks, fasting, etc. For a while, when nurses or doctors would ask her when her birthday was, she would say "Mickey Mouse!" I couldn't hardly believe it when the day of the party actually got here-we had spent so much time talking about it. I think it was just how she pictured it!

On her actual birthday, we got her a tiny cake and a few presents and spent the evening with just our family-me, Jason, Abby, and Lyla. She thought she was having another birthday!

We also went camping last week with Jason's mom. Abby and Lyla both had a great time. Abby told me about 10 times that she loved camping!

Please continue to pray for us all. It will be October and MRI time before we know it.

Recent Trip to St. Jude

I Iam sorry it has been so long since my last post. When we found out that the tumor had not grown we were so relieved and felt like things could really get back to normal around our house. We have been trying to get back on some kind of schedule and be normal again.

Our trip went very well. We took Lyla with us this time and it worked out really well. She was a good distraction for Abby and they both seemed to do better having each other. Abby was very brave during all of her procedures. She still doesn't like having to get an IV but she was the most calm she has ever been this time. After her MRI she told me that she loves having pictures taken of her head! She also said she loved our hotel (Grizzlies House). It was nice to hear her say that-I guess this all will become normal for us. When Dr. Armstrong called and told us the tumor hadn't grown, we were ecstatic! We went to eat at a fancy restaurant to celebrate! We also took the girls on the trolley which they loved!

The next day she had her EEG and did wonderful during that! Then we got to come home. Overall, a very good trip. Oh yeah, she got to sit on Santa's lap and make a superhero cape while we were there! They always have fun activities for them!

We appreciate everyone for the prayers and love they have shown to us. Please continue to pray for Abby that the tumor will never grow!

"And the Lord, He it is that doth go before thee; He will be with thee, He will not fail thee, neither forsake thee: fear not, neither be dismayed."
Deuteronomy 31:8

Some Good News

Morgan, Jason, Abby and Lyla are at St. Jude now. The results of the latest MRI show the tumor has not spread since the last MRI. They will not have to begin any treatment at this time and will be able to go home for three months then they will return to St. Jude for her next MRI. They will be in Memphis until tomorrow afternoon and then will be headed home. This is very good news and such an answer to prayer. Thank you for your faithfulness to pray for Abby.

Busy!

We had a wonderful VBS last week. Our whole family had a good time but we were exhausted by Saturday! I led the music and really enjoyed getting to work with all the kids. I even learned some new songs that I can't wait to share with the kids on Wednesday nights.

The pageant went great Saturday night! Abby looked so beautiful and did a pretty good job passing out crowns. Thank you to Pasha and Whitney and everyone else who helped make it a success. They raised a lot of money for us and we really appreciate it!

Yesterday, Abby and I had a special day. We got our hair cut, got pedicures, ate lunch, and went to see Ice Age. We had so much fun! We rarely get to spend time out together just the two of us. I think I had more fun than she did! I spent all day looking at her and listening to her just thinking-I have the most beautiful, smart, and amazing child! I am so lucky to be her momma!

We are going to Branson this weekend with my family for a mini-vacation. I am so excited! I love Silver Dollar City and Abby has only been at night at Christmas. There will probably be some rides that she shouldn't ride but I think she is going to love it!

We leave Monday to return to St. Jude. This time we are taking Lyla with us. We have appointments on Tuesday and Wednesday and another MRI. I figure we will be there til Thursday though b/c they always slip in extra appts. We are hopeful that the tumor has not grown so we won't have to start chemo but we have noticed some changes in her in the past few weeks so I won't be surprised if it has grown some. I am pretty sure she had a seizure earlier in the week and she seems to be having some vision issues. St. Jude upped her seizure meds (twice) to see if it was a problem with her meds-it is just really hard to know if it is due to meds, tumor, surgery, or her age. They didn't think we needed to have the MRI this week though so we are going to enjoy the rest of the week and our trip to Branson and worry about all this next week! Please pray for us though. As the MRI gets closer we get more anxious. And pray for Abby-she is very anxious about having to have another IV and getting blood drawn. She asks about it every day, multiple times a day. She doesn't mind the MRI-just the IV. So pray for our whole family!

"Cast thy burden upon the Lord and he shall sustain thee: he shall never suffer the righteous to be moved" Psalm 55:22

4th of July

We had a great 4th of July weekend! We got to spend time with our families, eat, swim, and watch some great fireworks! Abby loved them but they scared Lyla. We have really enjoyed the nicer weather and have spent a lot of time outside.

This week is VBS at our church so we have a very busy week ahead of us. We decorated the church today and it looks great. I can't wait until it gets started tomorrow night!

Don't forget about the pageant Saturday night!

Abby's Army Benefit Pageant

I just wanted to let everyone know that there will be a benefit beauty pageant for Abby at UACCB on Saturday, July 11th. It will be in Independence Hall and will start at 5:15. Entry forms must be received by July 6th (Monday). It is for ages birth to 18 years so if you or anyone you know would like to enter call Pasha Alexander at 870-307-8284.

Abby is very excited about the pageant. She will be presenting the crowns to the winners (if she doesn't chicken out). I told her she would be a princess for the night and would get to make other little girls princesses too!

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.

Sunday, May 31st

I just want to start out by saying that Jason did a fantastic job today! I thought I would bust with pride! I am so lucky to be married to such a wonderful, Godly man! I was so glad that our whole family got to go to church together today. Everyone was a little cranky but we made it and it was worth it!

Abby is doing alright but she's not 100% One reason is that she is not sleeping well. She won't hardly take a nap during the day and at night she won't go to sleep. Last night she stayed up til 11 and tonight she went to sleep at 10! Way past her normal bedtime! During the day, she will be fine and then she'll start crying and want me to hold her. Every day is a roller coaster-for all of us!

Thank you all for the prayers and please keep it up! We should get the final pathology report in the next few days so pray that the preliminary results were right and that it is treatable!

Saturday, May 30th

The girls and I had a very low-key day today. We just stayed home and rested. We got a new wagon (ours fell into pieces) and we spent a lot of time riding around the neighborhood! Abby was pretty clingy today which seems to make Lyla clingy too! It is hard sometimes to balance everything. I told Abby I needed to clone myself-she didn't like the idea of a bunch of mommies-she just wants one!

We are going to attempt to go to church tomorrow with Abby. I think she will do fine and I really want to go. No, I need to go! There is nothing better for your soul then singing those songs, hearing God's word preached, and being surrounded by your church family! It makes the whole week better! So I am praying that Abby will feel great and everything will go smoothly tomorrow.

Since tomorrow is 5th Sunday our church has potluck after morning services and then a devotional after potluck to take the place of evening services. Jason is doing the devotional tomorrow and I am so excited to hear him speak! Pray for him!

Please cotinue to pray for Abby and our family!

Friday, May 29th

I can't believe that a week ago I was standing over her bed in ICU and now she is watching TV with her daddy eating a peanut butter sandwich like old times! God is amazing! We have had a very good day. She seems back to normal. She gets tired more easily than she used to but other than that she is doing great!

I want to say thank you to the staff & parents at Cedar Ridge Preschool for the benefit they held last night for Abby at Oil Trough. They raised a lot of money for her and had a great turnout. They have hot pink bracelets and t shirts for sale at the preschool. You can call 870-264-3752 if you would like to purchase one. They also have stickers for your car that say "I'm in Abby's Army." Abby misses her teachers and friends there but we are hopeful she will be back in the fall!

"And we know that all things work together for good to them that love God, to them who are the called according to his purpose" Romans 8:28

More Info from St. Jude

I just got off the phone with St. Jude and got to ask more questions about our conversation yesterday. She said that the results from Le Bonheur were preliminary but are generally accurate. The pathologist at St. Jude's is highly specialized and his results will be final. Having said that, she told me that Le Bonheurs's results indicated a low grade glioma and are leaning toward the diagnosis of oligodendroglioma-a very treatable type of tumor! It is still preliminary and subject to change but just knowing that it is possible for her life to be spared not just prolonged is amazing! We didn't even think it was an option for it to be treatable! God is so great! Thank you all for the prayers-keep sending them up. Pray that it will be treatable! Pray that Le Bonheur's results are right! Pray that God will strengthen us until we find out the final results! I am on pins and needles and can hardly wait to hear the final report!

We love you all! Thank you all for the prayers! God heard us all!

Thursday, May 28th

Abby had a much better day today! She was alert and happy most of the day. She even played a little dress up! I was craving Chinese food and was just going to get take out but she decided she wanted to go in the restaurant and eat so we all loaded up and went out to eat. We even got ice cream afterward! It was wonderful to get her out of the house and do something normal. We all needed that.

St. Jude's called today and we go there on June 9th and 10th to meet our doctors and learn what our treatment plan will be. She also said that the lab results from Le Bonheur indicated that her tumor was a low grade glioma. We were very excited to hear that! We still don't know what that means for her prognosis but its better than if it were high grade. I am pretty sure it means she won't have to have radiation which is a relief. I am really having to learn some patience! I want to know everything and I want to know it now! She is supposed to call me again tomorrow with the details of our appointments and I plan on asking more questions about what low grade gliomas are.

Please continue praying for all of us!

Fundraiser/Benefit on June 13th

There will be a fundraiser June 13th at Southside School for Abby. There will be BBQ plates, pie/cake sale, live auction, and silent auction. The food will be served from 5-8 p.m. and the live auction will start at 6 p.m. There will NASCAR and St. Louis Cardinals autographed items as well as items donated from local businesses to be auctioned. The BBQ plate is $6 and will include a sandwich, coleslaw, baked beans, dessert, and drink. To reserve your tickets call Sarah at 870-613-3469, Casey at 870-307-3784, or Valarie at 870-613-5643. Please tell all your friends-especially if they are NASCAR fans or Cardinals fans. They won't want to miss out on some of the items!

Wednesday, May 27th

I am sorry I didn't get to post anything yesterday. It has been a little chaotic around here. Lyla was glad to be home but a little out of sorts yesterday. She was pretty cranky all day (actually we all were cranky). I think we are finally back in the swing of things though.

Abby is still tired a lot and just lays around most of the time. Sometimes I can get her to look at a book or do a puzzle. Most of the time she wants me to hold her (which is why I didn't post yesterday). She is normally so active that it is hard to get used to her being so lethargic. I know she had a major surgery but I wasn't prepared for how bad she would feel. She doesn't complain but she just doesn't talk much. She does perk up from time to time and seems like her usual self though. A few minutes ago she was watching "America's Funniest Home Videos" with her daddy and was giggling so hard and talking a mile a minute.

We are still amazed that she can walk and talk even though she had a piece of her brain removed! God designed our bodies in such an amazing way. We are so thankful that he sent Dr. Boop our way too. Everyone at Le Bonheur was wonderful. We really loved it there.

Please continue to pray for Abby and that she will start to feel better soon!

"I will praise thee, for I am fearfully and wonderfully made: marvelous are thy works..." Psalm 139:14

At Home

We are all home and loving it! It will probably take a few days for everyone to get adjusted to being home (and to wash all our clothes) but we are glad to be here. We think we will get to be home for about 2 weeks before we go to St. Jude's and start the next round (chemo and/or radiation). So we are going to enjoy being home together since we don't know what the future holds for us.

Please continue to pray for Abby. She is still in pain but is having to take pain meds less frequently. Dr. Boop said it would be 2-3 weeks before she would feel like herself. We have crossed a big hurdle but there are more in the future so please don't stop praying for Abby and our family! We love you all!

"I will sing unto the Lord, because he hath dealt bountifully with me." Psalm 13:6

Going Home

From Tanya

Abby is being released from the hospital this morning and they will be going home. Morgan said they are all very glad to be going home and are looking forward to a restful evening. She will post more later in the day once they get in and get settled.
Thank you for your continued prayers for Abby. Our family appreciates you all so very much.

MRI

Abby had her MRI this afternoon. Everything went smoothly. The doctor probably won't be in to discuss it with us until tomorrow morning. She slept a lot today and has eaten well since the MRI. She is coloring right now. We are about to take a bath and get some pain meds and go to bed! We will let everyone know what the doctor tells us tomorrow.

I just want to say a big thank you to all those who organized the benefit Friday night. I heard that there was a big turnout and that it was a lot of fun. We also appreciate all those who provided the talent and the pies/cakes. Thank you all who attended as well! We are overwhelmed by our community's response to our situation. It lifts our spirits to know so many are praying for Abby and care about our little girl.

Sunday May 24th

Abby had a good night last night. She slept well. We should have the MRI today so we are just hanging out drinking clear liquids! Abby is in good spirits today and doesn't seem to be in much pain. I gave her a bath and she has on clean jammies and feels good. Thank you all for the prayers, please keep sending them up!

Back in Her Room

Abby rested well throughout the night. They rescheduled the MRI for tomorrow so she has been moved back to her old room. She is resting comfortably but you can tell she is in pain when she does wake up. They have her on pain med and she can eat and drink, but she has been too sleepy to eat or drink much. They had to cut her jaw muscle so she will be on soft foods for the next several days. Her face is swollen and will continue but it's not as bad as we thought. The incision looks good and she didn't lose a lot of hair.

We all got to rest last night too. We are just so happy that she is doing so well. God is good!

She's OK

Abby came through surgery ok and is recovering in ICU. The doctor said they removed most, but not all, of the temporal lobe. He felt like he got a lot of the tumor but not all of it. She may have some peripheral vision loss but that should be the only side effect to expect. The preliminary results from the tissue sample was inconclusive so it will be 7-10 days before they know exactly what type of tumor it is and develop her treatment plan. Her face is starting to swell and will continue for several days. She has woke up and talked to us and she is moving her arms and legs. You can tell the incision site hurts but they are keeping her well medicated overnight. She will have another MRI in the morning then move back up to her regular room. We don't know exactly how long we will have to stay, probably 5 days.

We are so grateful to God for bringing our baby safely through surgery. Please pray that she will have a speedy recovery with minimal pain. Also pray that the tumor will be slow growing kind that will respond well to treatment.

Thank you all for the prayers today!

Surgery Has Started

Dr. Boop began surgery just a few minutes ago. She was very upset all morning because she couldn't eat. She did well while we were in the holding area and went back with little fuss. Dr. Boop said it will take 4 hours or longer. She will recover in ICU. Please pray for her!

Bed Time

We finally got the blood they needed! Yea! We also got to move to a bigger room. When we got in this room Abby said she really liked her new room. I do too. We have cots to sleep on tonight and are about to turn off the lights. Pray that all will go well tomorrow!

What the Doctor Said

Dr. Boop did come by and he went over the surgery plan with us. He will not be able to remove all of the tumor. He will remove the temporal lobe (or the majority of it) where most of the tumor is located but he will not be able to take out the branches of the tumor that reach out into the other areas of the brain. He said removing the temporal lobe will have little to no side effects. Removing it will help with diagnosis, may stop the seizures, and will make room for the pressure that will occur from radiation/chemo. There are some risks involved but he said 90% of patients come through with no problems. Her incision will be over her ear under the hairline. It will be in the shape of a question mark. There will be some swelling around the incision and she may have some headaches for a while. He said she should be back to her normal self in about 2-3 weeks but she will need to play quietly for about a month. No trampolines! So we are disappointed that he can't get it all but we aren't surprised.

They tried for the IV again with no luck. They got some blood but came back later and told us they didn't get enough and what they got hemolyzed. So they have to stick her again. We are very unhappy about that. She has been stuck so many times and that is the thing she is the most afraid of. They should be here soon to try to get the blood. They scratched the IV until they put her under for surgery. We just have to be sure and give her lots of fluid tonight. I will try to post again before bed.

We're Here

We are here and settled in to our home for the next 3-5 days. We have had a lot of nurses and residents in and out all day. Abby has been a trooper, as always. She has played and talked and ate. The only thing she is afraid of is the IV. The nurse tried to start an IV but didn't get it so we are waiting for the IV team to come start it. Everyone here has been so friendly and helpful. Abby, Granny, and daddy just went downstairs to watch "Hotel for Dogs" and eat pizza. We haven't really learned anything new. We missed Dr. Boop so we don't think we'll get to talk to him until the morning. That was pretty disappointing but we did get here a little later than we were supposed to. They checked the schedule for us and we will take her downstairs for pre-op around 11 am. Please pray for her, especially during that time! I told her today while she was scared about leaving for the hospital and getting an IV that God is like a daddy bird who keeps His baby birds under His wing. So He will protect her like a daddy bird protects his babies. She liked that. We had baby birds on our porch so I think she could relate easily.

"He shall cover thee with His feathers, and under His wings shalt thou trust: his truth shall be thy shield and buckler" Psalm 91:4

t-shirt orders

If you want to place a t-shirt order please call Sarah at 870-569-4053. She will take orders today. If you call tomorrow (Friday) please call Tiffany at 870-307-3302. We appreciate all the support and a special thank you to Kirk and Dana Shaw!

Wednesday, May 20th

This will be brief-we are trying to get everybody packed and ready to go. I wanted to let everyone know about the t-shirts that our friends Kirk & Dana Shaw at New Vision Graphics have made for us. They are available to anyone-just call, go online, or go by. The t-shirts say "Abby's Army" and have the verse "I can do all things through Christ which strengtheneth me." They are $10. We have ours and are wearing them Friday for surgery. A big thanks to them for the shirts! The proceeds go to Abby and her medical/travel expenses.

Brother Curt preached a great message tonight and I wanted to share the verse that stuck in my mind from his message. "...Be of good cheer: it is I; be not afraid." Mark 6:50 We will not let our fear destroy our faith. We know God is bigger than this and we know He is in control.

Tuesday, May 19th

We had the most wonderful day-Abby caught her first fish! It was a beautiful day and the fish were biting. Lyla even caught a fish with a little Barbie pole! It is so hard to believe that such a seemingly normal child could have such a large mass in her brain. She is so smart and funny and active. But that keeps me feeling hopeful-if she has something that large and nasty in there and can still function so well then she has to have a good prognosis.

I want to let everyone know about the benefit for Abby on Friday, May 22nd. Southside School is having a talent show and pie and cake auction from 6:30 pm to 8:30 pm. at the middle school. They have an Event Page on Facebook. We will be in Memphis that night (probably in ICU) but our hearts will be with all those who have put this together for us.

I also want to say that I appreciate all the comments that have been left for us here. It lifts our spirits to know that so many people are praying for Abby. How can we feel down when God has sent so much good our way? I love all the verses that have been shared-I keep them in a journal and read them when I get discouraged.

"The Lord is good, a stronghold in the day of trouble; and He knoweth them that trust in Him" Nahum 1:7

surgery update

I talked to Dr. Boop's nurse a little while ago. Surgery will be Friday at 11:30. It should last 3-4 hours. They are hoping that they can remove all of it-I hope so! They should know right away if it is high grade or low grade but the exact makeup of the tumor won't be determined for 7-14 days. That will determine the treatment. She didn't know how big the incision will be but they will salvage as much hair as possible. Please continue to pray for her!

Sunday, May 17th

Today was a good day-church services were wonderful and we got some great pictures!

Saturday, May 16th

Nothing new to report. We spent the day with family. Abby is on anti-seizure meds and steroids and they are making her very aggressive. We are trying to treat her the same and discipline her as we normally would but it's hard to be normal. Lyla is so glad to have us all home. Her and Abby have wrestled and played all day! We are really looking forward to church tomorrow and the girls are going to have their pictures made (if I can get them to cooperate).

To everyone who has given to us-you don't know how much it means. We are in awe of how much people have given-money, gifts, cards, food, prayers, etc. It lifts us up to know so many people care about Abby. Everyone keep praying!

Friday, May 15th

We have pretty much decided to get treatment at St. Jude's. We liked the doctors at MD Anderson but St. Jude's has been great to us and is so close. They just feel like a littl ray of sunshine in this storm. We are still praying about it though and haven't completely made up our minds. I like that St. Jude's wants to treat this aggressively. I want to fight it as hard and as fast as we can. Please pray that we will make the right decision.

We talked with the neurosurgeon's nurse and scheduled surgery for next Friday. The surgery will be at Le Bonheur. She seemed so sincere and genuine. She told me that Dr. Boop (neurosurgeon) was confident that he could help us. His plan is to go in and remove as much of the tumor as he can without causing any damage. She will be in the hospital for about 5 days. We are scared. This surgery will be the beginning of a long road. We know it needs to be done but she feels so good right now that it's hard to make that leap to brain surgery. Please pray that surgery will go well.

After surgery, they will take samples from what he removed and determine exactly what the tumor is. It could be a high grade (malignant, aggressive) or low grade (slow growing). That will determine her treatment. She will definitely have chemo but how much and how strong will depend on what they find when they take the samples. Please pray that it will be a low grade tumor and will respond well to chemo.

Background

I thought I would start off this blog with a little background about our family. I guess you could call it my testimony. A year ago, Jason and I had a 2 year old, a newborn, and a broken marriage. We could not get along. We fought constantly and had little joy in our relationship. This continued all summer and came to a head in July. We either had to make changes or get a divorce. I was given some great advice by a preacher-I could not change Jason, I could only change myself. So I did. I started going to church again after a long absence. The church was Maple Springs Missionary Baptist Church. They had a revival in September and the preacher spoke about how you can't serve God and the world. You have to choose. I chose that night to serve God. No more excuses, no more holding back. I was all in. I told Jason that I was starting over with a new life and I would really like for him to join me. He did. We became very faithful to church, to studying the Bible, and to prayer. It changed our whole lives. We stopped fighting so much, the girls were happier, I stopped being so negative. I felt so lucky that God would give our family another chance. Then on March 8th he moved in our lives again. Jason went forward and got saved! All this time I was living with a lost person and didn't even know it! I didn't think it could get any better but God proved me wrong! He took our broken marriage and turned it completely around. Now we are best friends again! We rediscovered the love that brought us together in the first place.

I now know that God did all this to prepare us for what was to come. We could not have made it this far without the support of our church and the support of each other. A year ago we would have been torn apart but instead we know we can make it, no matter what. We know it won't be easy but we have faith that God will pull us through. We can feel His arms around us and He has already provided for our every need. We feel so blessed to have our church, our families, and each other.