Happy Thanksgiving to all. Again, it's been a month since I've sent an update. I am a bad blogger! LOL

An update:

I have been extraordinarily tired for almost three weeks now. After about two hours of sitting up and trying to do something, anything, I run (as well as I can) back to bed, hardly able to hold my eyelids in the open position. I am also experiencing the type of headaches I was having when I was diagnosed, but they are centered behind my left ear. It goes away when I lay down or if I take some Tylenol. So, is this good or bad news? I don't know. I have another MRI scheduled for December 16th. I hope to get a better picture then.

It's been four months since this challenge began. It feels like a long time to me but, when put in perspective, it isn't all that long when you look at it with eternity in view.

Dh and I are at a crossorads as we look to the future. I need Dh home with me just about all the time to help look after our children. And since my prognosis is nothing if not unpredictable, we need flexibility in his job. I feel God's hand in this situation and I know that He will lead us to the right place. I would like to know right now what is coming down the pike but I have to keep reminding myself that He will open the door for us. I am praying that God will give us the grace to walk through that open door at the right time.

We are homeschooling in fits and starts. I have been sleeping much of my days these past three weeks. My two older children have taken to bringing their books to the bedroom and doing their learning on my bed. I feel as if we aren't doing enough and, like many moms, I fret about their success in the future.

I feel my biggest battle right now is psychological. I am tired of dealing with this tumor problem. It shackles my energy and keeps me tied to my house and even my bedroom. I am one who loves surprises but I can't wait to find out what they are. I would love to know where this is going so I can plan my part. But God doesn't reveal anything until we are ready to accept it, and when it is time. It just isn't time. So, I'll continue to fight against my frustration and look for ways to be about my Father's business in my home.

I am not feeling profound so I will sign off here. I am planning another update after my next MRI reading on December 19th.

Joyfully,

Elyse

I experienced a few things this weekend on the way to Duke:

My husband and I asked the elders of our church to anoint me with oil and pray for me as we are instructed in James 4. After church on Sunday, the elders gathered and, with my family in attendance, they each prayed for me. That was a wonderful experience. (just a side note: God sovereignly led us to this church and I can hardly stop thanking Him for it)

Then my Nana came over in the afternoon and said they were having a healing service at her church that night and she wanted me to come. Of Course! But here is the really cool part. My other grandma came down from New Jersey with my Dad to come with me to hear my results. So, both my grandmas were with me at the healing service. They were both praying for me. What an honor! My grandmas are godly women and have been for a very long time. They have been praying for me daily since they found out my mom was pregnant. Talk about a spiritual heritage! Now you can see where my faith has developed. I have a long family history on which to look back and draw from. God has never once failed my family and He has blessed all of us so much.

Anyway, I was so excited to have them both lay their hands on me and pray pray pray. The pastor also anointed me with oil and prayed. It was a great time with the Lord.  I was anointed and prayed for both morning and evening so I consider it a double blessing, a double portion of God's grace.

The other cool, sort of Twilight Zone thing that happened was that my mom, dad and sister spent the day together at the hospital. Not so uncommon, you say? Well, my parents separated when I was 14 and divorced soon after and both are happily remarried. 

But God has a sense of humor. The four of us, my grandma and my husband, sat in the waiting room and then in the little examining room for three hours. We laughed and talked and, if you can believe it, had a really nice time. I wouldn't want to meet like that every week, but I know God had a reason for doing that and I am thankful He did.

So, even in the midst of problems, God is up to something good. I don't know why He is leading me through this and I may never know until I ask Him face to face. I guess if He wantd me to know He'd tell me. But, I pray that He will continue to hold my hand while I'm walking.

Joyfully,

Elyse

Hi!

You heard it here first!

My husband, father, mother, sister and grandmother all traveled to Duke yesterday to hear the results of my MRI. I'll get to that part later, about the experience of spending the day with my family....

But on to the exciting stuff.

There was no obvious growth of the tumor, which, I guess, was a concern of the doctor's from the beginning. So, if you define miracles as when something bad doesn't happen though it was expected, chalk up one miracle. (I am counting it as a miracle myself).

The swelling has decreased markedly around my stem even though my steroid dosage has decreased. If the tumor was thriving, the swelling would not decrease and I would have to stay on a high steroid dosage. But I have decreased my dosage by more than half and the swelling is minor right now. Another MIRACLE.

The tumor is still there and has not decreased in size,as far as the doctor's can tell. It is possible (probable I think) that it is shrinking and will just take some time to show up on the scan. 

I am going to consider this a MIRACLE on the way. I believe God has already healed me. Sometimes His answer is wait because He has a better plan in mind. There are still lessons for me to learn through all of this. One thing I have learned is that if I rush ahead of where God is, I will miss what He has for me. And I may miss what He has for me to give to those around me.

So, while I am sick to death of being impeded; not being able to drive, not being able to hear properly, having weakness when I walk, I am praying that I won't run ahead of where God is waiting to teach me something.

I am not too good at this. I like to plan ahead, be prepared for any situation. I get too caught up in my lists and I forget to look around me and learn from the present. I guess God is giving me another chance to learn this lesson.

I will have a follow up MRI in two months to see what progress has been made. I'll have an MRI every two months for a year to see what is happening. If my symptoms return or if the MRI shows the tumor is growing, chemotherapy is the next option. I believe that won't be necessary. I will also, God willing, be weaned off the steroids in a month!

So there is a lot to celebrate!!!!!

My faith has been bolstered by all the prayers that have been prayed on my behalf. It's like there was a huge snowstorn, 20 inches fell in a day. I needed to walk through that snow to get to my house. So, hundreds of people came out with shovels and cleared a path for me. Some people I knew, some I didn't, but everyone was united in a common goal, to shovel a path just for me so I could get home. I didn't have to do anything except walk. And the path was completely clear as I walked home. I saw the snow piled high on each side of me. Sometimes it was so high I was afraid it would cave in on me, but there was always someone standing between me and the snow wall, protecting me from everything. It seems my part was the easiest. I just had to walk. God sent the shovelers and then He took my hand and led me through the valley.

I know this is not over yet, but God has been so good to me that I can't help but know that His favor won't stop now.

I'll post my other mumblings about events that surrounded my doctor's visit in another blog.

Tearfully joyous,

Elyse

I wrote this during a morning devotion and thought it would be good place to write it out.

Why I'm Glad God Doesn't Parent Like Me

He didn't make mistakes with His firstborn and then over-correct with all the other one that come behind.

He doesn't play favorites, ever.

He knows when to step in, when to let them fall but He's always there to dust them off.

He doesn't hover, trying to keep them from making mistakes.

He never says he has to finish cleaning the bathroom before He can sit and cuddle up with a favorite book.

He never yells, though He does get angry. But His anger instructs, never tears down or makes it a fearful thing to get close to Him.

He expects a lot but He never nags. He always leads by example.

And I made all those mistakes before lunch on Monday.

Joyfully,

Elyse

Hi again!

The countdown to the MRI miracle continues! I will be going to Duke on Tuesday, October 11th for an MRI. Then, on October 17th I will meet with Dr. Friedman, again at Duke and he willl tell me the results and the next step.

We're praying for a miracle. There have already been so many miracles and I have learned so much in these past three months that I almost think that healing will be anticlimatic! Just kidding. God doesn't do anything halfway or without perfection, so however He chooses to move in my life, I pray for the grace to accept it and go forward making a difference for Him and His kingdom.

God has been busy answering our prayers, some sovereignly, some through other people. My NJ scrapbooking friends held two raffles and another dear homeschooling friend is holding a yard sale for us and our NJ home church and NC home church (both named Grace) have blessed us. And my family, is right around the corner always ready to help out. It is a humbling feeling to be on the receiving end of so many blessings. I almost want to say, "Gotcha! I was just kidding, I'm okay." It's a very odd feeling.

My faith is still strong, mostly because of all the prayers being prayed by friends, family, people I don't know but hear my story. I know it must sound pitiful, "Thirty-seven year old woman with five young children has an inoperable brain tumor. She's been told she has a year to eight years to live."

But I have a different story.

 "Thirty -seven year old, vibrant, joyful woman with a devoted husband and five awesome gifts from the throne room of Heaven, has been given a chance to live her faith before many people. She lived a pretty average, hum drum life before discovering a brain tumor. And, now, with no hope, but God, she is learning how to really live for Him. She knows, no matter what, she is going to live forever.

So, God has been meeting our needs for everything from childcare to meals (a very important thing if you know me) to postage stamps coming in the mail when I had just run out.  I cry every time the mail comes because I receive so many beautiful cards with so many beautiful words. Who has time to dwell on the negative. My glass is not only totally full, it's full of sweet nectar.

But I don't want anyone to think it's okay to stop praying! Please pray for wisdom for my doctors, wisdom for my family, for peace for my children (especially Conlan and Hannah) and that I could be a witness to everyone with whom I speak.

I love everybody!

Joyfully,

Elyse

September 11th

I just noticed the date and realized I should take a moment and remember how it felt that day four years ago. Scared, uncomprehending the hatred shown to us, then peaceful, remembering that there is a plan and the Great Planner. And we read in the back of the Book who triumphs.

I salute and honor the many brave, selfless, incredibly hardworking servicemen and women who are doing something incedible to protect our freedom where it has been attacked. I pray that God will bless you with safety and may you come home soon, victorious. And I pray for wisdom for our leader, President Bush. Continue, Lord, to guide and counsel him in the decisions he must make.

I have only four more treatment left! The past two weeks have been the hardest yet but even then, it hasn't been as bad as it could have been. I look like a chipmunk because my face is swollen, my ears ring, I wake up with a headache, my legs are weak and I have a hair trigger temper (it's the steroids, really). Does it sound like I am complaining? I'm not, it's more like cataloging. Because...

I CAN think, see, hear, touch, smell, taste, laugh, walk, feed myself, read, teach my children, kiss my husband, breathe fresh air, sleep in my own bed, hug, speak, plan for the future, brush my own hair, hold my baby and so many other things. The things that bother me, bother me, but the things I can do, exhilerate me.

My verse of the day is Psalm 27:13-14. The whole Psalm is worth memorizing but this one verse is especially poignant for me.

"I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong, and let your heart take courage. Yes, wait for the Lord."

I believe I will see the goodness of the Lord in the land of the living. In fact, I am seeing it every day. People praying for me. Uplifing me with encouraging words, cards, gifts. So many people I can touch. So, I am waiting and while I wait, I am praying that God would show me His goodness that is already here. Please join me in praying that the other part of this Psalm would take residence in my heart, that of learning His way more intimately.

Please continue to pray for my dear husband. He gets the brunt of my bad moods and his plate is full of child loving.

Joyfully,

Elyse

Hi,

It's been too long since I updated my blog and much has happened.

My mother, step father, aunts and uncles worked, selflessly, long and hard for two weeks and moved us into a wonderful home in Fayetteville, NC on Saturday. We were so blessed to move into a furnished home in the same neighborhood as my family.  

My treatments are continuing without interruption which is another praise. I am fighting a little bit of bronchitis with antibiotic and we think it was caught in time and won't become a problem. Another praise. My radiologist, while not hopeful about the diagnosis is encouraged that I am tolerating radiation and the steroids so well. My side effects are not enough to warrant concern which could mean the tumor has not grown (something that could happen because of the radiation). Another praise!

I have only two more weeks of radiation left. The time is going by quickly, which I attribute to the mercy of the Lord.  After that I will be waiting four weeks and then I will have another MRI. Based on those results, the next step will be determined. I am expecting a miracle.

I continue to see God's hand on my life in many little ways. I see a little hummingbird outside the window and it makes me think how creative God is to have thought of such a precious little bird. When I am getting radiation, I can feel the presence of God come into the room and I relax and enjoy the moment.

I hope I am not painting a picture of the idyllic bliss of having a serious disease. I snap at my dear husband and children more than once a day, at least. I cry a couple of times a day about inconsequential things like not having my shampoo in my shower, or when I overcooked my pancake. Small things seem big while I am trying to ignore the big things that are big. 

I am not able to finish school every day and that distresses me. But then I look at the bigger picture. We're together. And we have the Lord.

Joyfully,

Elyse

Well, I've completed two weeks of radiation already. We are slowly settling into a routine of school in the morning, radiation at noon and a some more school in the afternoon, though more relaxed because I am tired in the afternoons. I have had so much support from family and friends. I am sure this would not be going as smoothly if not for all the help that has come our way.

The radiation doesn't hurt and my side effects have been mild thus far. I am very tired, have frequent headaches, walk unbalanced and a little dizzy, dry mouth, insomnia and very sensitive to hot and cold. But, all of those things are just a nuisance to deal with. I can walk under my own power, I can swallow, I can breathe on my own and I have maintained my sight. All of these things remind me how my Heavenly Father is blessing me. I have so many reasons but to praise Him all the more because of His kind and tender mercy.

I mentioned to my pastor that it is almost a guilty pleasure to be feel so close to God. I feel like I have been chosen for this special thing and I don't know why but I am reveling in His grace. It's like the feeling of joy when you first walk into the room with the Christmas tree on Christmas morning. The lights are twinkling, and expectation courses through the air. For a moment you hold your breath and try and take in the scene, to savor it. I feel like I am standing in that doorway all day long and I never tire of that joyful feeling.

Of course this is more than a feeling. It is a deep knowing, an abiding. I am aware of the possibilities. If the tumor grows, it could inhibit my breathing, walking or sight. If the swelling grows, who knows. The life expectancy with my diagnosis is 5-8 years. I understand the possibilities and I choose to cling to something else. I cling to the promise that God is able to do exceedingly, abundantly more than I can ask of think. Before I even knew how to pray, He was sending an answer. His answer may not be the tumor is gone, or it may be, but His answer is perfect and will come just in time. His plans for me are to give me a future and a hope and He works ALL things, even tumors, together for good to Him who love God and are called according to His purpose.

I have known these verses all my life but they are real to me now. They are true. They are words, yes but they hold life in them, and hope.

We started school this Momday and, again, it is an answer to prayer. I was concerned that I wouldn't be able to do school. I have always believed that God called our family to homeschool. Just a few months ago I was asking God if maybe I missed something and didn't really hear his voice when we decided to start our homeschool journey. But, wouldn't you just know it, God has sent confirmation that we are supposed to be homeschooling.

The beginning of this year went more smoothly than any year before and my children are, slowly, adapting to our routine and even enjoying the discipline of school more than they have in the past. God is truly good to me. Most of all, I have

been able to lay down some of that perfectionism that I infiused into our school life, making things more difficult than they need to be. I am experiencing more joy in the school day now. Thanks go to God alone.

I have to say that the prayers of the righeous have been availing much. I can feel the support of so many voices lifted to the heavens on my behalf. It is a humbling and heady feeling to be remembered by so many. I am constantly reminded how powerful prayer is and how the body of Christ is being united through this. Only a great God would give us a way to unite, act, think and prepare through the powerful discipline of prayer. 

God is providing for us materially, spiritually and emotionally through His people. I know the road ahead may be bumpy and long, but if the past is any indication of the present, I know the future will be full of miracles and blessings.

Joyfully,

Elyse

Well, so much has happened since I first wrote to let my friends and family know about the tumor that was discovered in my brain stem. It really is all in my head.

I was diagnosed with a low grade glioma in my brain stem by one of the foremost neurologists and neuro-oncologists in the country. It is suspected to be benign but biopsy is not recommended because of it's location almost directly in the center of my brain stem. Surgery is also medically unfeasible. I begin radiaton treatment on Monday and it will continue for the next 6-7 weeks.

Through all of this, God has been near to me and my family. He was not taken by surprise by this turn of events and He has not stepped off His throne for one second. He is there, ruling and reigning, everything, perfectly. Already, my cousin has led someone to the Lord through my story and my Dad, a prodigal of late, took the time to pray with me and told me he has gone to his knees every day to carry me with him to the throne of grace.

I have been favored with peace. It is as if I am sitting above the vortex, looking down as an interested spectator and then looking up into the eyes of my Father who intently stares at me with a smile on His face that tells me I am doing okay.

There is much praise on my lips as God takes my hand and walks me through the valley of the shadow.

We do have many needs. I will try and quantify them.

Prayer - Please continue to pray for all of us. My children are holding up well, but the strain wearing on them. Pray that God would strengthen my husband. He has taken a step higher in his walk with the Lord and I am humbled and amazed by how God is workng in his life.

Homeschooling - We are planning on starting school this Monday. I have been advised by my radiologist that this is not the wisest choice but I cannot stand to send my precious children away from me for so many hours of the day when they need the normalcy of our homeschool routine. We have homeschooled from the start five years ago and we use Ambleside Online and Charlotte Mason's methods. My mother is supportive and I will have help from family and friends, too. It will be a big undertaking, though. I also just ordered our yearly curriculum supplies which amounted to more this year than in years past.

Finances - My husband has been taken an unpaid leave of absence so he can help me and our children at home. We don't know if he will have a position when this is all over, but, again, everything is in God's hands and He will supply all of our needs.

Nursing - I have had to stop nursing because of the dyes used for the scans and preparation radiation therapy. This has caused my some discomfort and much sadness. I have nursed all five of my children and enjoyed the experience immensely. But now we have the additional cost of formula.

God has truly given me many blessings, every day, and I am amazed that He has chosen to take my family through this challenge.

Here is my original email if anyone needs a little catch-up