Our Trip to the EMU

First of all I want to say thanks to all of you who have been praying hard for Abby.  It was a long week and we have more appointments coming up in 2 weeks. 

I posted updates on Facebook while we were there but I wanted to give some more details on here-not just for my readers but as a record for us too.

We arrived in Memphis Sunday night because our MRI was scheduled so early for Monday morning.  I overslept and we were late!  So embarrassing.  But I was amazed at how quickly I was able to get us ready, packed, and over to Le Bonheur :)  The MRI went smoothly-it is always so hard to watch her go under anesthesia.  Unfortunately the IV in her left hand came out and they had to re-stick her in her right hand.  After the MRI we got settled in to our room and the EEG was hooked up.  She had a rainbow ponytail of wires haha!  While on the EEG monitoring we had to stay in our room.  They have video surveillance so they can record the 'outside' of the seizure as well as the 'inside'.  There was a playroom down the hall that she could go to.  It had a Wii which was a treat for both of us-we thoroughly enjoyed the Dance Party!  So did the nurses who were watching haha!

Tuesday morning we got the news that Abby's tumor was stable.  Praise the Lord!  I never cease to be amazed at His power!  He has truly performed a miracle in her life!  It was such a relief.  Like a huge weight was lifted!

Tuesday Abby had to undergo a SPECT.  This is when they inject a radioactive isotope during a seizure.  It travels to the area of the brain where the seizure is coming from and 'lights it up'.  They do a scan of the brain after the injection.  But it has to be done during a seizure.  And between the hours of 8 am and 1 pm.  And Abby was NPO because they were going to sedate her during the scan.  And she got hungry around 9 am.  It was a long morning.  She couldn't color or anything like that because of the IV, she couldn't leave the room, and she was hungry.  We did a lot of I Spy.  Thankfully the hospital has lots of movies too!  Abby kept saying "I wish I would have a seizure so I could eat." At 1 pm the nuclear med tech came in and told us they would do the baseline injection (they have to inject and scan without seizure for comparison).  The tech injected her, walked out, and about 1 minute later Abby had a seizure.  I hit the button (there is a button you push during seizure) and yelled but it was too late :( I could have cried.  The tech thought Abby was capable of laying still long enough for the scan so she didn't have to be sedated.  That was awesome!  I was so glad she didn't have to be put under! I was so proud of Abby while she laid there as still as a statue!  And then she got to eat!  Woohoo!

Tuesday afternoon the nurses held a little 'seizure info party' and talked to us about all things seizure-safety, medicine, school, etc.  It was nice to be around other moms who are dealing with this and to get more information.  I got to ask some questions that had been on my mind and see how others cope.  I am thankful they did that for us!

Wednesday she had to do the SPECT again.  Thankfully though she could eat since she wasn't going to be sedated!  Around 8:30 am I got a phone call and realized I was out of coffee.  I walked a few doors down to the coffee pot while on the phone.  I had the thought that she would probably have a seizure while I was gone.  Sure enough!  I walked in and could see the look on her face that something was wrong.  I dropped the phone (not my coffee!), yelled, and pushed the button.  The tech was in there within seconds and did the injection.  Then we went down for another scan.  She was a rock star at being still!

That afternoon Abby had another test called a MEG.  They added some electrodes to her head and put this huge helmet on her.  She had to lay still again inside a room that looked like a bank vault.  I had to leave her all by herself :( But there were cameras and speakers so the doctor and tech could keep an eye on her.  The doctor and tech were awesome!  I think they were quite fond of Abby too.  The MEG basically maps her brain-where her language center and motor center are located.  After the MEG she was able to have the IV removed. 

On Thursday we were told we would get to go home that afternoon!  They took off the electrodes and she was able to take a shower.  Then off for another test!  This one was called a TMS.  It also mapped her motor and language centers. 

All of these tests are very complicated to 'read' so we left Le Bonheur without the results.  Our doctor decided to add another medication for Abby.  This one is called lamictal.  The worst side effect with this is an allergic reaction that leads to a terrible rash.  Hopefully she will be able to take it!

Le Bonheur was wonderful to us-again.  Our nurses, techs, and doctors were phenomenal!  I loved them all and became attached to a few!  The child life specialist kept us stocked with books, puzzles, games, etc.  The nurses babied her-and me!  I can't put into words what it meant to us to be so well taken care of!  I felt like God just reached down and arranged things perfectly for us-He made sure we had the best care!  So many at that hospital seemed to go out of their way to make life easier for us.  And so many volunteers!  One day some volunteers came around with stuffed animals and books-two of Abby's very favorite things.  Another day they brought special snacks and drinks for us both and stickers and toys.  She also got to choose from a treasure box after her TMS-surprise she picked a stuffed animal haha-which happened to be a bear named Abby!  It was great as far as hospital stays go.  Now the laundry situation (I had to ride the elevators to find one that was empty and worked, twice) and cafeteria (not much to choose from) did leave me a little stressed but all the other great things made up for it. 

Another blessing while we were there-Abby made a new friend.  Her name is Sarah and she is 8.  They have a lot in common.  Both girls have the same type of tumor (but on opposite sides), same kind of surgery, and same surgeon.  Both are patients at St. Jude and both are having persistent seizures.  They got to play together in the playroom twice.  It was so amazing to watch these two precious girls with heads full of wires just having a ball together!  And I got to chat with her mother about all the things that go along with tumors, surgery, and seizures.  It was so nice.  We exchanged  info and have already been in touch.  Abby says that Sarah is her best friend.  She thinks its so neat that there is another little girl out there with the same tumor.  The nurses felt like God had lined it all up for them to meet-I have to say that I agree!  I don't think it was a coincidence!

We are home now trying to enjoy life and Christmas preparations before our next trip to St. Jude in a few weeks.  She will have another MRI at St Jude-this one is called a functional MRI.  I think she will stay awake for this one.  We have eye, neuropsychology, OT, PT, neuro-oncology, and neurology appointments.  It will be another long week! 

Please pray that Abby responds well to the new medicine and that God gives our doctors wisdom as to the best course of treatment for Abby.

Down But Not Defeated

I was waiting to update everyone on Abby's medicines and seizures because I wasn't really sure what to write.  Its been up and down, touch and go.  The newest medicine, Vimpat, seemed to be working very well-there were no seizures and virtually no side effects.  I was ready to shout 'Victory!' and spread the news that this medicine was 'the one'. And then the seizures started again. 

Our neurologist has increased her dose twice but the seizures just keep coming.  She has reached her maximum dose for this medicine now.  We are extremely disappointed and frustrated.

It looks like she will have to begin a third medicine.  But our neurologist wants us to have the long term EEG done again before she prescribes more medicine.  Abby and I will be heading to Le Bonheur the week after Thanksgiving and she will be admitted to the EMU (Epilepsy Monitoring Unit) for at least 2 days but she could be there for up to 5 days.  I will stay with Abby and Jason (and our parents) will stay home with the rest of the crew.

We desperately need prayer!  Jason and I do not want Abby to be on multiple medications.  Please pray that the information they get at the EMU will guide them to the perfect treatment plan for Abby.  Pray for peace and comfort for us during this time.  Pray for our little ones-life will be out of sorts for a bit.  Pray that the seizures stop.  Pray that the tumor disappears.  Pray that Abby is healed.

Although we are down, we are not defeated.  I believe that God is true to His word.  His word says that we don't have to be afraid or worried.  His word says that Jesus is making intercession for us-He is praying for Abby.  His word says that He has not forsaken us and that He is with us always.  And His word says that He answers prayers.  I believe it and therefore I have hope!

Without Fail

I was doing my bible study this morning, reading through Joshua.  I came across the phrase 'without fail' in this verse: 'And Joshua said, Hereby ye shall know that the living God is among you, and that he will without fail drive out from before you the Canaanites...' Joshua 3:10

'Fail not' and 'without fail' is found several times throughout the bible to describe God.  These are a few I found when I did a quick search.  I am sure there are more...

'Be strong and of a good courage, fear not, nor be afraid of them: for the Lord thy God, he it is that doth go with thee: he will not fail thee, nor forsake thee'
Deuteronomy 31:6

'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

'There shall not any man be able to stand before thee all the days of thy life: as I was with Moses, so I will be with thee: I will not fail thee, nor forsake thee'
Joshua 1:5

'And David said to Solomon his son, Be strong and of good courage, and do it: fear not, nor be dismayed: for the Lord God, even my God, will be with thee; he will not fail thee, nor forsake thee, until thou hast finished all the work for the service of the house of the Lord'
1 Chronicles 28:20

'It is of the Lord's mercies we are not consumed, because his compassions fail not'
Lamentations 3:22

But yet we continually doubt Him and His ability to handle our problems.  Why is that?  We are reassured over and over and over that God does not fail.  Maybe we doubt because we fail so often and can't wrap our heads around 'without fail'. 

Sometimes I just have to remind myself that although my human flesh fails, God does not fail.

That's the truth.  God's truth.  And that will never change!

Another Medicine Change & A Hard Day

The past several days have been stressful. On Thursday, she had a seizure. On Friday, she began to get a little confused and disoriented at times. She had more confusion and a seizure Saturday. Sunday wasn't any better-she had a seizure during church. Monday was awful. She wasn't even the same child. Very confused. Very bizarre behavior. I spent a lot of time on the phone with the neuro nurse. It was finally decided to discontinue it and try something new. We are praying that the new medicine has no side effects but is effective at stopping the seizures. It will take a while for the new stuff to build up in her system so she is at risk for having seizures. Pray that she doesn't.

I have a confession: I had a major meltdown earlier today. I just couldn't hold it back any longer. I try to be strong & of good courage, full of faith, and all that but sometimes it is just too much. Afterwards I felt so much better. I had begged God to lift the weight from me and He did. God is faithful that way. I have a little book with my favorite Bible verses in it. When I am upset I read through it and usually a verse jumps out at me and comforts me. Today was no different. There were actually two verses and I want to share them with you.

First-'Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened unto you: But rejoice inasmuch as ye are partakers of Christ's sufferings; that, when his glory shall be revealed, ye may be glad also with exceeding joy' 1 Peter 4:12-13

A trial like this is not easy to bear. It hurts. But it brings me closer to Jesus. It causes me to look forward to the day that I see His face. And it also reminds me of how much he suffered. When I cry out to Him (like I did this morning), He points me to the cross. He was tortured. For me. He bore the sins of the world. For me. He was separated for the first (and only) time from His beloved Father who couldn't even look at Him. For me. He died. For me. He knows pain too. More than I will ever know.

Second-'And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me' 2 Corinthians 12:9

This morning I felt like I wouldn't make it. I couldn't bear such a burden. I couldn't make it through the day. I was hurting so badly for my precious baby. And I got a text that said something like 'you are the strongest woman I know'. I thought, "If you only knew how weak I really was you wouldn't say that." But then this verse popped into my head. I may be weak-but He is strong. Any ounce of strength I have had throughout this whole journey with Abby has been because of Him. I realized I can't make it. I can't bear this burden. But He can! Hallelujah! I don't have to be strong-I just have to lean on Him, trust in Him, hold on to Him-and He will be strong for me. He will carry me. He will bear my burdens for me.

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

'Casting all your care upon Him; for He careth for you.' 1 Peter 5:7

Year in Review?

I can't believe I haven't updated the blog in a year! Life just got very busy and this fell by the wayside. I am sorry to those of you who only know us from online life-I'm sure you have wondered about us a time or two! I recently started using Facebook to do quick updates but have felt bad about neglecting the blog. I have a lot to share though and am going to try to do better! First I need to introduce our newest family member-Julie was born January 24th and has been a blessed addition to our family! She is a joy! In the past year we have struggled to keep Abby's seizures under control with medicine. We have had some scares but even now her scans show that her tumor is stable. Praise the Lord! I can't remember exact dates but I am going to try my best as this isn't just for others but really a record for me and for Abby. One day I would like for her to be able to see all that happened to her. As I posted last year, Abby started having seizures again but the tumor remained stable. She was put on Zonisamide and after adjusting all was fairly well. She seemed to struggle a little with school work-her processing was slower and her memory just wasn't what it used to be. But we adjusted. We had another MRI the week after Thanksgiving and the tumor remained stable. She was doing well with her medicine. In December, right after we returned home from St. Jude, Abby started having seizures again. I spent a lot of time on the phone with our neurology nurse and our neurologist increased her medicine. We had to do that a couple times over the course of two weeks because she continued to have seizures. Our oncologist was concerned and wanted us to come back even though we had just been there a few weeks earlier. We met with Dr. Boop (our neurosurgeon) and Dr. Kun (radiation oncologist). The head neuro-radiologist (who reads the MRIs) looked at all her scans and felt sure that they hadn't missed anything. So our mind was put at ease that the seizures weren't being caused by tumor growth. It was decided to let neurology work with her medicine and that we would hopefully find a combination that would work well for Abby. We had a great Christmas and New Year. We were anticipating the arrival of the baby. And then the seizures came back. We were at the max dose for the Zonisamide and everyone was a little frustrated that they just kept coming back. So a week before my due date, Jason and Abby went to Le Bonheur in Memphis and had a long term EEG. I just have to say here-the nurse that coordinated our trip was fantastic. I don't remember her name but she was so kind and caring. She checked on me all week and kept me updated about what was going on at the hospital. She was such a blessing to me that week! Anyway, Abby was hooked to the electrodes and had to stay in a room under video surveilance for 3 days. I was heartbroken that I couldn't go with her. But I was due any day and most everyone felt like a hospital was not the best place for me at that time. She had a seizure almost immediately after being connected to the EEG but didn't have another one the rest of the stay. They were able to do some mapping (locating the seizures point of origin) on it but not as good as it would have been if she would have had mulitiple seizures. Our neurologist at Le Bonheur, Dr. Van Poppel, decided to add Keppra (which we were on when her seizures first started) and to possibly wean her off the Zonisamide. I had Julie a few days after they got home. Abby was weaned off the Zonisamide fairly quickly. Her school work improved. She had another MRI at the end of February and everything was still stable. The tumor board met and reviewed Abby's case again. After much discussion, all the doctors agreed that the tumor was definitely stable. They couldn't see any signs of change since her surgery. We were told to come back in 6 months! Unfortunately the seizures came back again. At the end of June we headed back to St. Jude for an MRI just to be sure that the seizures weren't being caused by tumor growth. Her scans remained stable and our doctor decided to try for 6 months again. We increased the Keppra a few times. Each increase caused her to be a little 'off' for about a week or two. The seizures seemed under control for a while. At the end of August (just a few weeks ago) she began having seizures again. She had reached the max dose for Keppra so we added a second medicine-Trileptal. Unfortunately, Abby had an allergic reaction to it and had to change medicines again. This time it was Topamax. So now it has been about 4 days on the Topamax. We will increase it slowly over the next 3 weeks. She does seem to be struggling a little on this medicine but its to be expected at first. We were told to give it a few months before declaring it a failure. On another note-we completed our first year of homeschooling and loved it. So we decided to try it again this year for first grade. I am so grateful that God laid it on my heart to teach her (and the others) at home. It isn't easy to manage everyone and everything but I am so glad she gets such tailored and one on one instruction every day. So, that's the basic story of our past year. I know that its a lot to read but I really wanted it all written down. I have more on my mind-hopefully I will be able to post again soon. Please keep praying for Abby. She needs an army of prayers right now!

Fantastic News

The last few weeks have been hard. The new seizures, adjusting to the medicine, and anticipating the MRI really took its toll on us. It's hard to explain: we weren't sad or angry or hopeless, but it was like a cloud was hanging over us or an extra weight was on our shoulders. I had to constantly remind myself that God was faithful and just, and that He would take care of us. It takes a lot of work to keep your faith meter full. I prayed and studied and leaned on my church family and on Jason for support.

But today God parted the clouds and lifted the weight. He reminded me why I can trust Him and why I should never doubt Him to begin with.

Her scans were stable. There was no change in the tumor. In fact, the radiologist looked over all her scans and can't find any changes ever. That's right. It doesn't look any different then it did in November 2009. The same radiologist who wrote in his report "definite change to the size of the tumor" three months ago looked at that same scan and said "I don't see what I saw last time".

Isn't it amazing? Isn't it wonderful?

I have no explanation. I can't wrap my brain around it. My first thought was "prayer works" and I thought of all the people who have been praying so hard for her and I was so grateful that people care enough to do that. And then I thought, "God is unbelievably amazing!"

I don't understand it. But I am grateful. So very, very grateful. And I feel that He has something so big and great for her and I wonder what it could be. And I feel so glad that He chose me to be her mama. She is an incredibly brave little girl (who happens to be beautiful too).

Thank you from the bottom of our hearts for praying for her. It makes a difference!

Prayers Please!

Abby has had a minor setback. She has had to start seizure medicine again. She started complaining about having a "funny" feeling late last Monday night on the left side of her body. After several phone calls to St. Jude, we were told she was having sensory seizures and would need to go back on medicine to control them. We were very disappointed. We are just praying that this doesn't mean the tumor is growing. We will just have to wait for the MRI to see. The medicine has several possible side effects that we are having to watch for which is a little scary too. These are our prayer requests:
1. pray that she won't experience any negative side effects from the medicine
2. pray that the tumor is stable
3. pray that God will give His wisdom to her doctors
4. pray that Jason and I will continue to trust in the Lord to take care of her and us

Thank you all so much for being faithful friends.

Although we are anxious and worried, we know that God is with us. We have a peace that we can't explain.

"And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus." Phillipians 4:7

Quick Update

I am the worst blogger. I get busy with life and reading other people's blogs that I forget I should be blogging too!

First of all, an announcement for those who don't live near: God will be blessing us with another baby in January! We don't know if its a girl or boy yet but we are very excited to add another little one to our family.

Second, Abby is officially a kindergartner now! We just finished up our first week of home school kindergarten and it was awesome! I have another blog for our home school adventures that I may or may not keep updated :) Updated to add: here is the link to other site. I did an update for our first week of school.

Last, our next MRI is September 13th. Please pray for Abby, that the tumor will not have grown, they don't detect any changes in her vision, and that the trip goes smoothly.

I will post an update after we know our MRI results. Thank you so much for your prayers!

Rough Week with a Happy Ending

I am glad this week is over! Abby's MRI was Monday. She had a complete meltdown over the IV. She is strong and very hard to hold! But she is such a trooper and as soon as it was in there, she was back to her normal self. The MRI was kinda late this time, and she didn't complain once about being hungry or thirsty. I am always amazed at how she takes this all in stride! So tough! She did great during the MRI, she has the sedation thing down!

On Tuesday we met with our neuro-oncologist. The MRI showed that the tumor is definitely growing but at a very slow rate. No need for treatment if she has no new symptoms/problems. But I had noticed some peripheral vision problems-she seemed to be running into stuff more. Our oncologist was very concerned and told us that if there had been a change in her vision, we would most likely begin treatments. Her vision can't be gambled with and if the tumor was causing vision loss, it would have to be dealt with. We headed back home anxious to have her eye exam.

On Thursday we returned for the eye exam. I was so anxious I thought I would jump out of my skin. Thankfully there had been no change in her vision. YEA! No treatments! She also had a hearing test and saw neurologist who discharged us from them. Another victory! If we ever have concerns about seizures we can call them but we don't have to have routine appointments anymore.

I can't even put into words the emotional roller coaster we were on this week. We are blessed that Abby has no outward signs of what is lurking under the surface. But the MRIs and little scares like we had make it so real.

Our precious little girl has a brain tumor.

I grieved for her this week in a way that I haven't in a long time. My heart was broken again. My soul cried out to God for help. It was a rough week. I am glad its over.

Please don't stop praying for us. Pray the tumor stops growing. Pray that it doesn't affect her vision, her motor skills, her hormones, anything. Pray she never has to have treatments. Pray for God's protection and mercy. Pray that God gives the doctors wisdom. Pray that God gives Jason and I strength.

"For I the Lord thy God will hold thy right hand, saying unto thee, Fear not, I will help thee"
Isaiah 41:13

Next MRI

I just wanted to let you all know that Abby will have an MRI on Monday, June 13th. Please pray that the tumor will have remained the same or shrunk. Please pray that she will be brave for her IV. Please pray that God will calm our anxious hearts. Thank you so much!

Results

Abby's tumor has grown slightly but not enough to warrant any changes in her treatment plan. The neuro radiologist saw two areas of "very subtle increase" when compared to an MRI done in November 2009. The rest of the tumor is stable and there is no need to treat these changes so we will go back in 3 months and do it all again!

Thank you so much for your prayers, please keep them up!

MRI Monday

I just realized that I forgot to inform everyone of our upcoming MRI. We will be heading to Memphis on Monday for an MRI. We will get the results Tuesday. Please pray that the tumor will have shrunk or stayed the same. Pray that the trip will go smoothly and that our family will be safe. Pray for all the children there at St. Jude. Thank you!

Water

Almost two years ago, Jason and I drove to Arbanna and listened to a sermon by Eddie Wyatt from Mark 4:35-41. This set of scriptures is about Jesus calming the sea and Brother Eddie spoke of great storms in our lives and how to weather them. He spoke of his own storm, when his son nearly lost his life in a car accident and how he sat by his bed in ICU and begged God to spare his boy’s life (which He did). I left that night and prayed that I would never have to face such a storm. I was afraid that I would not be able to come through it, that I would drown in the storm instead.

A few weeks later Jason and I listened to The Old Ship of Zion while we drove to revival at our church.
“I was standing on the banks of the river, looking out over life’s troubled sea. When I saw an old ship a sailing. Is that the old ship of Zion I see? Its hull was bent and battered from the storms of life I could see. The waves were rough but that old ship was steady. Is that the old ship of Zion I see?”

The next day, we were at Arkansas Children’s Hospital with Abby. Less than a month after that sermon, I was in the ICU, sitting next to Abby’s bed, begging God to spare her life. Brother Eddie’s sermon played over in my mind and I knew that all he had said was true. I knew that Jesus was with me on this boat being tossed in the storm. I knew that at any time, Jesus could rebuke this storm and say “peace be still”. I knew others were watching (the little ships in verse 4:36 and the Gadarene demoniac in 6:2). I knew they wonder what manner of man this was that helped us survive such a storm. I knew I could trust Him. It was no coincidence that we heard that sermon on that night. God had a message for us that would sustain us through our great storm.

A song that I love reminds me of this time and of this sermon, Be Still My Soul.
“Be still my soul, the Lord is on your side. Bear patiently the cross of grief or pain. Leave to thy God to order and provide. In every change, He faithful will remain. Be still my soul, thy best, thy heavenly friend, through stormy ways, leads to a joyful end. Oh be still my soul, the waves and winds still know His voice who ruled them while He dwelt below.”

As soon as I hear this song, I go back to that sermon. I remember that I can have rest in Him. The waves and winds obey His voice!

Except, it isn’t always that easy. Sometimes my faith falters. Sometimes I am riddled with fear and doubt. That is when I think of Peter. I seem to have a lot in common with him.
“...And when Peter was come down out of the ship, he walked on the water, to go to Jesus. But when he saw the wind boisterous, he was afraid; and beginning to sink, he cried, saying, Lord, save me. And immediately Jesus stretched forth his hand, and caught him...” Matthew 14:29-31

Peter was walking on water! How wonderful! What faith! But then, this is the important thing, he took his eyes off of Jesus. The wind was furious, the waves had to be high. He began to sink. I can’t tell you how many times I have done this. I have great faith and then...I take my eyes off of Jesus. Just like Peter, I look at the wind and waves, I become afraid, and I sink. But, praise the Lord, Jesus stretches forth his hand every time and catches me. Life is scarey, cancer is scarey, losing my child is scarey. But, “what time I am afraid, I will trust in thee” Psalm 56:3

I recently found this song and it speaks to my heart as well. Its called Part the Waters
“When I think I’m going under, part the waters Lord. When I feel the waves around me, calm the sea. When I cry for help Oh hear me Lord and hold out your hand. Touch my life and heal the raging storm in me.”

There is one more set of verses about water that I call to mind when I am overwhelmed and afraid.
“When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.” Isaiah 43:2

What a promise! He is with me, in deep waters, fiery furnaces, great storms, always!

I am so thankful to God for sending us to Arbanna that night and for laying it on Bro Eddie’s heart to preach that message. I am thankful for songs that I can listen to that speak the Truth and for His word, which is the only thing that can heal a hurting heart. God is wonderful!

Great News!

We just returned from our latest trip from St. Jude and we received wonderful news. The tumor still has not changed!! It was awesome to hear the doctor say those words! I am still amazed at how God continues to bless our family and I am so grateful that His healing hand is still touching my precious baby!

This trip went really smoothly. Lyla did just fine being away from us-I think she was treated like a queen while we were gone! Abby was very brave yesterday during the IV poke and the MRI. She is so brave! Macy was good too! That was definitely an answered prayer! We have to go back for two more days to finish up some appointments but they don't require any needles or anesthesia. Here are a couple pictures of Abby and Macy during this trip.



I met a few other mothers this trip whose daughters have brain tumors as well and are in a similar situation as us, waiting and watching. It is comforting to meet others who really understand.

After being at St. Jude and seeing all those kids and families who are struggling to survive, I feel extremely blessed. There are so many things we take for granted and it is very humbling to spend a few days being reminded of how fortunate we are to be able to be leave the hospital with a relatively healthy child and have another 3 months of "normal" life. So many families are not that lucky. Please pray for all the families that are at St. Jude, battling this terrible thing called cancer. Thank you for the prayers for Abby, and please continue lifting her up in prayer. This is a lifetime battle for her.

Family of Five

We are now a family of five! Macy Grace was born 5 1/2 weeks ago and has been such a wonderful addition to our family. Abby and Lyla adore her and, of course, Jason and I are in love with her. We feel so blessed to have such a perfect baby girl! My heart just wants to burst sometimes when I think about all that God has done in our life.

Here are a few photos of her. I don't have a single one of her and her sisters! Maybe one day I will get around to that!



The girls have done really well adjusting to life with a new little one around. I made it through the sleep deprivation and Jason made it through dealing with me! God has answered so many prayers for us throughout the pregnancy, labor, delivery, and the coming home process. He is so faithful and wonderful! It has not always been easy though. There are many days that life feels like chaos and I have to remind myself that this is just a season of life and we will make it. That is why it took so long for me to update the blog-I barely have time!

Last night I was reading to Macy out of one of my favorite books. I bought it for Abby but after having a trying past few days with my newest girl and with life in general, I had a feeling it would help change my attitude, and it did. The book is "God Thinks You're Wonderful!" by Max Lucado. As I was reading "You were deliberately planned, specifically gifted, and lovingly positioned on this earth by the Master Craftsman", tears ran down my cheeks as I was reminded of how blessed I am, even when life isn't going according to MY plan. He has a deliberate plan for me and for each of my girls. He is the one who is wonderful!

I would also like to ask for prayers for Abby. We will return to St Jude in 2 weeks for an MRI and our next round of appointments. Pray that the tumor will remain stable, with no change. Pray for Abby as she faces another IV. Pray for Lyla, she will stay with family this time and she cried about that today (she wants to go). Pray for Jason and I as we will be taking Macy with us. This trip won't be easy but we will make it!

"So promise me you'll never forget...that you aren't an accident or an incident...you are a gift to the world, a divine work of art, signed by God" Max Lucado from "God Thinks You're Wonderful"

Family Update

I haven't written in a while and thought I should probably update everyone on how we are doing. To make a long story short: Great!

Abby and Lyla both are keeping me on my toes-running, jumping, dancing, learning, fighting-all the fun stuff little girls do. They are best friends and worst enemies every day. I don't think I have ever written about my experiences going from working mom to stay at home mom but I LOVE it! It is so great to see their personalities grow and develop and have a front row seat to all that they learn and do and say. Abby has had no new symptoms/warning signs develop. She is a typical 5 year old in every way. Lyla likes to be her comforter-any time Abby gets hurt or get in trouble, Lyla is right there, patting her back and asking if she is ok. So precious!

I am now almost 36 weeks pregnant. All is going well with this pregnancy. I have started feeling really tired lately and all the typical pregnancy issues (reflux, back aches, insomnia, etc.) are making labor and delivery look better and better! I have had such an increase in my desire to hold her-I can't hardly wait! Everyone in the house seems to feel that way too. Abby and Lyla are talking about her more and Jason keeps saying that he can't wait either. She doesn't have a name yet so Abby and Lyla call her "baby sister". Lyla will raise up my shirt and hug and kiss my belly and say "I love you baby sister". Abby talks to her all the time, just like if she were really there looking back at her. She loves to put her hand on my belly and feel her move. Lyla isn't patient enough for that! We are slowly getting our house ready for another baby and it won't be very long until she is here!

As you can see, we are all doing really well. We just try to enjoy every day and make the most of it. Although Abby's tumor is never far from our thoughts, we try to not let it rule our life. We talk openly about MRIs and IVs and medicine and her scars without over talking, if that makes sense. When we pray we ask God to keep His healing hand on her. We watched part of the St Jude special with her and looked for all the doctors and nurses and places we recognized. She thought it was so cool that her hospital was on tv-she has no idea what a big deal St Jude is! She seems to take it all in stride-it is just a part of her life and she doesn't seem phased by it at this point. I don't know at what age she will understand the seriousness of her diagnosis but I pray every night that God gives us the wisdom to deal with her questions/concerns/fears as she grows.

She asked a while back why she had to take medicine every day-she figured out that not every little girl has to do that. I talked to her about how God makes everyone special and unique-we aren't all the same. And God had chosen her to be extra special-that was why she had to take medicine and why she has MRIs and 2 scars and that was why she had to stay in the hospital and have surgery. Not too long after that she declared to her cousins that she was special because God made her that way! Another day I heard her tell a cousin that she doesn't get scared because God is always with her! It feels good to know she takes what we tell her to heart.

Please keep praying for her and for our whole family. Pray that the tumor never grows and actually shrinks (so God can really show off His power)! Pray for our whole family to have peace in our hearts and for Jason and I to have wisdom when talking to her and Lyla and when making any medical decisions. Pray for Lyla and "baby sister" that we will always keep their feelings in mind and that they never feel left out. Pray for all the patients at St Jude and their families. Pray for my friend Kellie and her precious daughter, Alyssa. Alyssa's tumor has grown and they are facing big decisions. I would not be as ok as I am today if it weren't for God sending Kellie my way. She has been a constant source of encouragement and understanding. Thank you all for your prayers-you have no idea what they mean to us!

"This I recall to my mind, therefore have I hope. It is the Lord's mercies that we are not consumed, because His compassions fail not. They are new every morning: great is thy faithfulness. The Lord is my portion, saith my soul; therefore I will hope in Him" Lamentations 3:21-24

MRI Results

We just returned from St. Jude and everything went very well-the MRI showed no tumor growth!! Words will never be able to describe the feelings I have after hearing those words, utter relief and joy.

Abby was very brave yesterday when she got her IV. We had been practicing and she did awesome! She did cry but she did not melt down, I was so proud! The MRI went smoothly and she had an easy recovery from it. Lyla went with us on this trip and she was so good-I am super proud of her too!

We were able to go the the Children's Museum and play for a while and have a nice meal last night. We were all very tired though.

Today we had an eye appointment-her vision is still excellent. Then we met with the neuro oncologist. It was a fairly quick and easy trip and of course the results are fantastic!

I feel so absolutely blessed that God would answer our prayers time and again. It is hard to see so many children who are so ill-I wonder why we have been spared so much. But all I can do is give honor and glory to Him for His wonderful works and never stop praising His mighty name!

Thank you all for your continued prayers. They are being answered!

MRI Coming Up

Abby's next MRI is in less than a week. Please pray that the tumor has not changed and that we get another 3 months!

She is doing great-no changes in her that we can see. She is excited and a little nervous about going back to St. Jude. She loves it there but hates getting "shots" (IV). She talks about the "shots" a lot and we have actually been practicing lately. She does really good with the IV until the needle comes out so we are practicing NOT LOOKING at the needle. She is going to turn her head and look at her newest stuffed bear instead while I sing her a song. Hopefully it will work. We always put numbing cream on her arm and I really don't think it hurts her but she had some terrible experiences with IVs and blood draws at other hospitals.

Lyla is going with us this time. This will be the last time we go as a family of four. Next time around we will have a newborn baby!

Pray for Abby, pray for Jason and I as this is a very stressful time, and pray for Lyla too! She tends to get overlooked during these visits.

The Past Few Months

Time is just flying by! I can't believe it is the middle of July already! It won't be long and we will be a family of 5! I thought I would update everyone on what we have been up to lately.

Back in May, Abby graduated from preschool. I got choked up during the ceremony because so much has changed in our lives in the past year. I am glad that Abby got to go back and spend time there and graduate with her class. She absolutely loved that place and loved her teachers, Ms. Christy and Ms. Linda. It made me sad that she won't be going back there, that a phase of her life is over for good. Everyone there has been so good to us. They raised a lot of money for us and prayed so hard for us.


We had the chance to go fishing at Adam's pond again! This is where we went last year around this same time, but under very different circumstances. We hadn't been to St. Jude yet or had surgery yet. We still thought she had gliomatosis cerebri! We had a great time this trip with about half the worries of last year lifted off our shoulders!


Memorial Day was spent at my brother's house. They have an awesome pool and the girls had a blast swimming there. Lyla is a daredevil in the pool. She had no fear!


We planted a raised bed garden this year, our first time to do so. We got a late start and some rocky dirt but it has grown quite well. When it was cooler the girls and I took care of it but now it is Jason's baby. We are getting tons of tomatoes. Sadly, bugs ate our squash and zucchini but the tomatoes and cucumbers are doing great. We also have 3 honeydew melons.

Before the heat settled in, we tried to clean out our house, building, and shop. We took 2 van loads to the Battered Women's Shelter! Our house is petite and adding another family member motivated us to clean out the junk. It took several days in the heat to finish but we have cleaned out and organized almost everything. I have the baby stuff ready to be washed and brought inside when it gets closer to time. I made room for her clothes in our closet and put the crib in its place.

It has been a very hot summer. I try to go out with the girls as much as possible but the heat makes me especially miserable and cranky. We got a little pool for them to play in and sometimes I turn on the sprinkler for myself!



Jason's mom went camping during the record heat so the girls and I went up there for a couple days. She has a camper but it was still too hot for this girl! My little ones had fun though!

Jason had a few days off around the 4th so we took the girls to Blanchard Springs. It was a really nice day and we had a lot of fun. We explored the spring and the caverns, ate a picnic lunch, and went for a swim.



We watched fireworks at the golf course this year. It was nice because the kids had lots of room to run around but unfortunately the trees blocked some of the fireworks. It was still fun!


Our church had VBS last week. We had a ton of kids! I did music again this year and Jason helped with the recreation (aka, dunking booth). The girls loved their classes and I think it went wonderfully. I was absolutely worn out by the end of the week but it was worth it.

Speaking of worn out, the baby and I are doing well. She is growing and so is my belly! The heat makes it harder but I know I will make it through. Abby was born in August during one of the hottest summers ever. I was 8 and 9 months pregnant when it was over 100 degrees outside, I can make it through this! I feel her moving all the time and my arms are starting to feel the need to hold her. A friend from church gave us a glider rocker and Abby has me sit in it and rock her babies so I can practice for her baby sister! I thought it was so sweet of her, but now she has got me longing to hold a real baby in it!

On a different note, after much prayer, research, and more prayer, we have decided to homeschool our girls. It has been an inkling of a thought since way before I quit work and everything happened with Abby. Then it became an occasional thought, then it became a pressing feeling that this is what we should do. I have already planned out our year, which will be like an advanced preschool. This way we can adjust to life with 3 girls before really tackling kindergarten. I actually started a new blog, Fruit of the Womb, to keep up with this journey but I am not sure that I will be able to keep it up. I want to, but it is time consuming, and time is something I am short on. I am not sure how this will work, but I do feel like it is what God is calling our family to do, so I know if I leave Him in charge that it will succeed. Please pray that we will continue to follow God's direction in this area.

We will be taking a short vacation to Branson at the end of the month, Abby's 5th birthday is coming up soon (August 10th), and our next MRI is August 23rd. Then we will just wait for baby sister to come in October! Please continue to pray for Abby, specifically that there will be no tumor growth.

It's A...

I had an ultrasound yesterday and we found out that we are having...

ANOTHER GIRL!!!

Honestly, I was surprised. I really thought it had to be a boy, I mean we have 2 girls already, so a boy has to come sometime, right? After the initial shock went away, I was so excited. Another girl! More dresses and bows and baby dolls! I love having girls and another girl, well that will be just too precious!! I can't wait to meet her, to hold her. I wonder what she will look like (other than beautiful), what her personality will be like, and what her name will be. I feel blessed beyond measure! Three girls!!

Thank you all for your prayers!