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!