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!