Changing sites

Thank you so much to everyone who has been following this blog, and thank you for all your encouraging words of love and support. We're going to be switching to a different blog site that is more specifically designed to meet the needs of our situation.
We hope that you will please go to www.caringbridge.org/visit/janae to continue sharing in this journey with us.

Hide away in the love of Jesus

For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us Rom 8:18

Sovereign Grace ministries has put out a terrific cd called Come Weary Saints and it was actually a cd I ordered two days before we found out about Janae's cancer. I received it last night when I got home for one night's sleep in my own bed. I opened it and listened to it on the way to the hospital this morning. My oldest daughter, Ellyn, was in the car with me and we were astounded by the words...
here are verse one and four of the first song

Come, weary saints, though tired and weak
Hide away in the love of Jesus
You strength will return by His quiet streams
Hide away in the love of Jesus

Come, hopeless hearts, do not despair
Hide away in the love of Jesus
For ten thousand joys await you there
Hide away in the love of Jesus

WOW, what a place to be, hiding in His love, strength by the quiet streams and ten thousand joys, I can't think of a better, more comforting place!!

God does not waste pain!

Wow. What a day. So much good news that I wonder if things are too good to be true. As I said in the first email this morning...Frank slept by her bedside last night and when I talked to him first thing in the morning, the news was that she woke up, smiled at him, and asked to play bubbles. (Something they need her to do for her lungs). Then, the doctor took out the nose tube! Great day! Then, she got to have a popsicle!! Really great day! There is a bad cough but that is par for the course. It was very concerning to me when I first got in the room today and heard the cough but by tonight it has been gone for hours. Her spirits were up and down today but at least she had spirits...yesterday and the day post surgery it unnervingly seemed she was just a body laying there. Amazing progress in a day, she walked twice. Yes, they coerced her to do it and she sobbed through her little journeys to the door and beyond (about 8 feet beyond the first time and longer the second) but she did it. They held her under her arms and she shuffled her feet and we went on a "sister parade" as our favorite nurse called it. Each sister led the way as we all brought the tubes and wires along with. What a sight! It was hard for her but we knew it was good for her.
We have heard nothing from the oncologist yet but it is because we were told that we would not have reports back from the lab till Wed. We will no nothing until then but we are told that most chemo/radiation regimens take about an average of two years. Right now that seems sooo long but I know God will give us the strength to face what is ahead. For today, only good news.
By bed time she actually cracked a smile for Mommy when no one was looking that was big enough that I could see a few teeth. That is coming a long way. Get this, when I said it was time to go to sleep, this lifeless little body that only moved and or talked when made, actually asked me if she could walk o bed!! (all of 3 steps) but she did. Up a stool even into the bed. It seems too good to be true. Then I talked with a friend from church and heard an interesting fact. Not only have friends and strangers been praying nationwide, but this friend said when he walked into church this morning, it was as though he could feel the sense in the air that Janae was on everyone's minds and in their prayers. This website even went up on the overhead. The love and care of our body of believers is overwhelming to a place beyond words. Doesn't scripture say "they will know you are Christians by your love for one another"!! Then, they were all focused on prayers for Janae throughout their flock study tonight. I think this is so interesting because it all of a sudden hit me why Frank and I have sensed the closeness of God so supernaturally over these past days. The prayers of the saints. WOW. Even tonight, another miracle while they were praying at flock... I got to share the way God has been healing Janae, blessing us, sustaining us, and going ahead of us with our favorite nurse. She said she could tell. She saw it from the start and then the girls faith impressed her so much when she had a long talk with them. God was glorified before her eyes and she hopes others who are going through the same thing can be encouraged as well. I reminded her that it is Christ who she is seeing in us. I told her it is Christ's peace that doesn't make sense in a time like this that we are sensing.
All I can really say now, besides that our hearts bursts with desire for Janae to heal quickly, is that we are soooooo humbled that God has allowed us to be a part of His great will to show Himself to all these people. I wish it was my body that was suffering so He could be putting Himself on display through our family but if Janae has to be the one then praise be to our God and Father that He does not waste her pain.

Sunday. Last night I was amazed to see God sustain my energy through the day because I had NO sleep on Friday night. I laid by her bed and it was the first night after the surgery so it was a long hard one. Today, different story. I slept at home and got the best sleep of my life. Frank slept by her bed but since we had a room change, he was able to have cot put by her bed (not the uncomfortable arm chair turned bed) and he and Janae had a great sleep. She was very lethergic yesterday. Not moving an inch. She struggled silently with all the tubes in every limb and hole of her body. She really struggled with the nose tube but she is such a compliant child by nature that she didn't complain much. I could just tell from her eyes and her silent whimpers. The nurses adorned her with care and help. She had to blow bubbles (which she normally loves) but did not show any emotion for this time. She had to do it for her lungs. She was stoic and stiff all day. I think concerned about how to move with all the things attached. She is on a lot of pain medicine. It was a major surgery, she has a large incision. Her blood pressure has been concerningly high since the surgery. She has wanted water very badly but is not allowed it.
That was yesterday's update but today is a new story. I know there are only a few hours of the day so far but Frank said she woke up smiling and asking if she could sit up and blow bubbles. The doctor came in a short time ago and took her nose tube out just like that. She is thrilled to say the least. She actually got a popsicle but no her tummy hurts really badly. Now I understand why they said 5 days till she can eat or drink. I guess because her intestines were fooled around with so much during the surgery (to get to the tumor) now they have to heal just like a twisted ankle would. They can't do their normal job in digesting food until they heal.
Frank meet with a pathologist this morning and they said we will not get the lab results till Wed so we can really have no idea of what lies ahead in light of treatment until those come back. They said a normal treatment would last two years.
We shall see what lies ahead for the day but we are beyond thankful and beyond blessed with all the Lord has accompished concerning her.

Sat. morning I write this. I am tired. I have counted 9 hours of sleep collectively since Wed. morning. I thought last night would be a time to rejuvinate a bit after falling into my makeshift bed next to Janae but it was a very tough night. It was the first time since all this started that I felt like I might go crazy. Watching the clock roll through the night can do that to someone. I may be tired but I also feel such a relief that the tumor is out. I can't believe it really. We were prepped for months of chemo, which would shrink the tumor, and then we could get to the surgery. We could get that yucky thing out. Now, it's over already. AND, it even went well. There were so many things that could have gone wrong and they didn't.
Here is a journal entry that I wrote the night before the surgery...
Oct. 23rd Long day. No sleep. Last night but 2 hours here and there. it is the end of the day. The lights have dimmed. I dread shutting my eyes because I found when I tried that last night, all the terrible thoughts tease with my emotions. Also, the tears flow fresh again. Its funny how just when you think your eyes can't cry another tear, the fountain spouts up all over again. I do know one thing though, after talking about this new development in our lives all day, reality is slowly yet seteadily setting it. Therefore, the thoughts in the dark tonight probably won't be as hard. Frank's tears flow fresh too. There is nothing like our loved ones in turmoil to cause us to run, sobbing, to the throne of grace.
So many prayers, gifts, visits already have started to show their faces today as the news has begun to unfold. I am astounded at how many believers, who don't even know us, are lifting us before our shard Lord. What comfort!! What a cushion to soothe our war torn hearts. Thank you, thank you, thank you! I thinkn one of the hardest things about the day was telling our families and children. They felt the pain the closest. Another difficulty we faced today was all the waiting...and often, the waiting, for nothing, as the doctors schedules are too filled up today, too filled up for the "important" tests Janae needs. A comforting thought is that God's timing in all this is perfect. So, we had one test done today of the three that were scheduled. I was concerned Janae would get so weary of sitting here all day because she is full of energy and playfulness and wouldn't want to be cooped up in here all day. Not the case though becausee God put us in an excellent hospital with a wonderful play center with more things to do than I can imagine. She had lots of fun and proclaimed so tonight. She had fun with her sisters in there when they visited.
She lays in front of me, sleepily watching a Curious George movie in the dark. Tonight, in her little world, George to the rescue, tomorrow, a different story, a hard road lies ahead-she will be put totally under for a biopsy. The doctor will have more answers then as to what is in there that he will be working on shrinking in the coming months but as for now, he is almost certain it is Wilms. (Another praise because Neuroblastoma is very a very poor prognosis.) Either way though he said it will be too dangerous to take it out before shrinking it. So, ahead lies more waiting through a tough chemo treatment. I don't like that. In my heat I want it taken out NOW. All of it. Let's be done with this deadly thing now that we know about it. In my head I understand the doctor knows best and that it is foolish to take something out that is too dangerous right now. I thank God for the doctor's wisdom and this modern technology. We too often focus on how modern medicine is adultered today and not how far it has come. God has given these doctors great wisdom.
With this comfort, I rest. I can't keep my eyes open any longer. I will lay my head down for what I hope is a peaceful sleep. The beauty in this is that while we sleep, the Lord never slumbers. Psalm 121, He watches over us.

So, as I said, that was written the night before the surgery. Now, I look back at my thoughts and concerns and am amazed at the truth in how God's timing was truly perfect. I was so frustrated with the timing of things but God made it all that way so the tumor could actually be taken out today!!!!! How cool. That justs proves that we are so caught in time and He is so not.
For those of you who are trying to follow my thoughts and our story, forgive me for "going backwards" to previous days journals so often.. I just have felt a strong desire to get lots of these thoughts down and I think we can go forward now as things are caught up.

This is another update from Amber (at Suz's request). Frank and Suzanne are in the recovery room right now with Janae. She's doing fine--and we're all praising God! The doctor was able to remove the tumor, though it was a complicated surgery. The tumor was quite extensive, and he wasn't sure they'd be able to get it out. They had to make her incision longer, and this allowed them to access the tumor and remove it. The doctor said her lymph nodes looked good; they've been sent off to pathology to verify that. She'll have a scan tomorrow to see if the cancer spread to her lungs. Because of the extent of her surgery, she won't be able to eat for five days or so--which means she'll be here at the hospital for at least that long. They have yet to meet with the oncologist, so much of what the future will hold is still unknown. The surgeon did tell them that he expected Janae will need both chemo and radiation to eradicate what may be left of the cancer (though he removed every visible scrap of it!) At this point, Frank and Suzanne are both planning to stay here tonight with Janae, and the rest of the girls are in good hands. Continue to pray for all of them. Today's news is wonderful, but there's still a tough road ahead. Suzanne said earlier that she is definitely sensing the nearness of God and all of your prayers. Pray that God will continue to grant them strength and a sense of his presence.

Praise God! This is Amber posting an update on Suzanne and Frank's behalf. The doctor called around noon to update us with the great news that he was able to remove the tumor! This is an amazing praise! They still need to examine the lymph nodes. Later they will also scan the lungs. These are both important to determine how far the cancer has spread. Please continue to be praying for these next steps. And pray for the doctors as they finish out her surgery in the next hour or so. God is so good! Frank and Suzanne have expressed a desire that God would be glorified through all this--please continue to pray to this end.