A Bitter Sweetness

October, 2009 ~ so glad to be out of the hospital and home

Family ski trip

Andrew flies! (Click to enlarge.)

A summer day at the skate park

One of my favorite pictures

December 2008

Andrew and Teddy

 (excerpt from "A Faith that Endures")

 There are many words I could say today but I'm feeling quiet. Fourteen years ago at 12:58 p.m., Andrew was born to our family. We rejoiced. A few years later as a little boy, he asked Jesus to be His Savior and the Lord of his life. The angels rejoiced! We love him. We miss him. We long to see him. One day we will.
I'm ready.

In the meantime, I'll just keep sharing the message of the Gospel. Remember, "God loves you and He has a plan for your life."
And as you walk out the plan, you are not left to do it on your own; Jesus is praying for you.

As always, thank you for your encouragement and prayers these past many months.

See?

a  photo taken while I sat on my front porch this week
See the spider? You can't see its web.

Sometimes I wonder what we might see if our eyes were opened to the things of the Spirit.
A few weeks after we received the diagnosis of brain cancer in our young son, Andrew, I wrote some words on a piece of scrap paper. A few months ago while cleaning out my desk, I found the scrap of paper. I tossed it in the trash.

I had lost my confidence. I began to doubt that what I had written meant anything at all. I had clung to those words for nearly 4 months...from diagnosis to death.

When I found them again, I felt mocked.

A few days ago while running my 3.1 miles, those words came back to me. And it was then I "saw" their value. I wish that I could retrieve the paper with the words. Too late for that.

But the words are still with me - written on my heart.

I am a believer in a personal God. A God who loved us too much to leave us alone. A God who was willing to give of Himself to rescue us from destruction. A God who, in a sense, became flesh colored in order to bridge the great divide between Heaven and Earth.

I am a believer in a God who knows intimately of suffering. A God who is well acquainted with our suffering. A God who speaks to us in varied ways.

A few months ago I tossed aside His words spoken to my heart. I doubted whether they were His words to me. I supposed they were just my own.

A few days ago I "heard" the words again. And I knew. And I know. Again I am clinging to the words. They kept me going last year. And they will keep me going. For every morning and every minute, for every step and every mile, I am that much closer to the realization of those words. Words on a scrap of paper tossed away in hurt. Words now drawn on my heart, tattooed for healing.

They are words that pull me from the pain of the past and ache of the present. They are words that draw me toward the freedom of my future.

They are simple yet profound.

"Don't look at what you see;
See what is coming."

The apostle Paul writes in 1 Corinthians 13:12, "For now we see in a mirror, dimly, but then face to face. Now I know in part, but then I shall know just as I also am known."

Ancient mirrors, which were made in Corinth, were made of metal and gave dim reflections, an illustration of our imperfect knowledge during this age. But knowledge will be full and instantaneous in the future state of glory. (footnote in my Bible)

John writes in 1 John 3:2 "Beloved, now we are children of God; and it has not yet been revealed what we shall be, but we know that when He is revealed, we shall be like Him, for we shall see Him as He is."

I threw away the words because I had clung to them as an assurance that Andrew would be healed and live here with us.
And now, of course, Andrew is healed and alive. But he is not with us. There is an ache and a sadness because we long for him. We miss him. We love him.

The other day I submitted to the tattooing of the words on my heart
because now I understand and cling to those words in a different way.
One day, all wrongs will be righted and all promises will be realized.
And so I will no longer look at what I see but I will see what is coming.

And what is coming is truly glorious! We shall live as we were meant to live before sin rocked our world. We shall see clearly. We shall see Him for who He really is and we shall be known for who we really are.

So for now I will walk this path and run my race as best I can with this earthly vision but I'll be ever on the lookout for a glimpse of what is to come.

A simple shift of my vantage point, and the sun highlights what I could not see before.
See the web now?

Edited/Rizpah here...

Edited: Treatment with Temodar first then a resting phase followed by the phase 1 study using Avastin, Irinotecan and Temodar.

Yesterday we were all in church together. The Christmas program was wonderful! Our pastor asked our church to be in prayer and fasting for Andrew on December 17.
We pray for a miracle of healing to take place in Andrew's body.
He told me again this morning that he needs to get better, that he wants to get better.
Amen.

Andrew had his simulation today. That is preparation for radiation. He should be starting within 10 days. They will call.

I think we have decided to go with a phase 1 study being conducted at All Children's Hospital here in St. Pete.
The combination of drugs has shown some promise. This is a hard decision because the potential side effects are greater than standard protocol. But after lots of research I am leaning toward the phase 1 study. My husband and I are going to give it a few days and pray about the treatment path.

Andrew is going through a lot right now. As you can imagine, this is very hard on a 12 yr. old.
He is on a wait list for physical and occupational therapy. That is very frustrating. We are limited in what we know to do with him as far as improving his function. In the meantime, his left arm dangles at his side and he walks crookedly and slowly. And the left side of his face does not cooperate with his right side.
Heartbreaking.

Meanwhile I am...
Persisting in prayer despite the medical prognosis...BECAUSE of the medical prognosis.
Trying to make these days "normal" for all of our sakes.
Hoping Christmas will bring a miracle for Andrew and many others.
Keeping two words in my mind...BUT GOD.

Prayer requests for Andrew:
healing, of course
improved function on left side
no more headaches
restful sleep at night
hope and happy days
no negative side effects from treatment
a cure

I love you all for your continued prayers and sweet encouragements. God is Good and trustworthy.
"By His stripes, Andrew is healed..."

Thankful

Andrew made it fine through the surgery yesterday. Thank you for your prayers!
He has been out of it mostly. I think this may be all the morphine he has had since Saturday. But you may find it funny to know he has watched a lot of The Food Network when he is awake. He and I used to snuggle together and watch Emeril years ago. Now he likes Alton Brown. It must be the scientific aspect Alton Brown brings to food!

Hopefully Andrew will be discharged some time tomorrow. Some good friends are fixing Thanksgiving dinner in their home for our other two children and my husband and I will eat with Andrew at the hospital.

We are staying local to do the radiation and chemo. We just can't leave our children and our support system again. It was too hard on the whole family before.

But I am also still researching alternative treatments to be used in conjunction with traditional protocol. We did not want to have Andrew go through the radiation and chemo because it does not cure this type of cancer and we hated to put him through the side effects to no avail. However, we are hoping it will give us more time.

Andrew's diagnosis is a GBM stage 4. It is the deadliest brain cancer and very rare in children. We are told there is no cure. BUT GOD.

I keep coming back to that because we know that God heals and we have heard of miracles happening for people who were sent home to die.
We continue to believe, hope, pray and breathe faith. Last week we were at our weariest and, to be honest, I thought I was near a break down at any moment. Sleep deprivation is a bad thing.

I am still praying for so many of you that have requested prayer. I don't have all the answers but I do have my faith and trust in a good God. I pray and believe because His Word tells me to. I persist because Jesus gave us the parable of the persistent widow. I trust in Him because He is trustworthy.

Happy Thanksgiving! We have our son so our day will be full of thanks.

I Love Sundays

Yesterday (Sunday) all five of us sat shoulder to shoulder at our church. What a great day! When our pastor welcomed Andrew back to church after such a long absence, many stood and clapped for him. That blessed us so much. I leaned into Andrew and whispered in his ear, "People love you, baby." Then our pastor directed his father (one of my favorite people) to anoint Andrew with oil and pray the prayer of faith (James 5:14-15).

Praise was lifted, the Word went forth, the Body of Christ loved on us and our family was blessed!

I wanted a picture of the five of us back in church together but our oldest son was ready to go and already in the van and our daughter had driven herself and had already left for home. Oh well. Some things never change! A family picture of any type is always a challenge.

Last night as bed time neared, Andrew and I were talking and I said, "Wasn't it great to be in church this morning?"

His reply: "I was excited!" And then he added, "I enjoyed Pastor Randy's message."

The message was the first in a new series our pastor is preaching entitled, All Things Have Become New from 2nd Corinthians 5:17.

What a fitting theme for our family. ALL things have become new, indeed!

Going Home

Friday the doctors decided that the high powered antibiotic (rocephin) was causing the side effects. I believe it has also been the source of stomach upset. Andrew had been on zofran round the clock for nausea but still had nausea.
Since being off the antibiotic, his white cell count went back to the normal range. And he has not had a fever since Thursday afternoon.
We brought him to our hotel room on a day pass and plan to be discharged in the morning. I hope and pray it doesn't take long. Since being out of the hospital he has eaten more. If he feels queasy, we stop and pray. So far so good. He has had slight headaches and one throbbing headache. We pray.
We have to get Andrew home and build up his body, help him regain his weight and build his immune system.
Please continue to pray that he gets a normal appetite back and regains weight and strength. We are depending on the power of God and not the wisdom of man.
I'll continue to update.

Celeste Welch sent a wonderful, faith filled couple our way. They offered to come to the hospital room and pray. We felt the power of God in the room.
The next day, Beverly Dru and her husband surprised us with a visit. They also came in like sunshine and interceded our Andrew's behalf! Each couple came just when we needed the Body of Christ.
Saturday morning I called my new friend (the wife of the couple sent by Celeste) and she drove over to pray with me in the hospital chapel. What a powerful time of prayer.
My parents drove up from Clearwater on Saturday and spent the evening with us and part of the Sunday in the hotel room with us. While my husband tended to Andrew in the hospital, I got some rest knowing my parents were right there with me. This morning my mom and dad and I interceded in prayer for quite a while before I went back to the hospital room.
On a day pass, we brought Andrew back to the room with us. Unfortunately they will not "allow" us to let him stay overnight in the hotel and take him back in the morning for discharge.
Thank you all for praying so fervently that we could go home. Please pray that our drive back tomorrow is uneventful. Just joyous.
Love,
Melanie

Monday Morning Update

Andrew is in surgery now to have a shunt put in. Because he still has the infection and even had a fever as they took him into the OR, he will not get a port today. Too risky. They will put in a feeding tube in his stomach. He has gotten very skinny and needs to be fattened up.

We continue to stand on God's Word and that alone, as we pray against the curse of cancer and all of its effects. God is always faithful and true to His Word which is a reflection of His character. To know God, read about Jesus. He said that if you have seen Him, you have seen the Father. Jesus only did and said what He saw the Father do. Jesus spent many hours on this earth in prayer to His Father. Jesus was a bondservant to His Father and went about doing the Master's business.

That is my desire ~ to be a bondservant, knowing and doing the will of the Father. Always on a mission to be about the Father's business.

Yesterday a woman I did not know previously talked to our pastor after church and then asked us if she could come pray for Andrew. She felt led to do this upon the pastor's Sunday morning request for prayer for Andrew.
She made a 5 hour round trip drive to come to the hospital room and pray for our son. She said she had thought about coming on Monday (today) but that God told her she should come yesterday. So she obeyed, not knowing that surgery was scheduled for 8:00 this morning.

The prayer on our hearts and lips this morning is from Psalm 19:21: "Many are the plans in a man's heart but it is the Lord's purpose that prevails."

I have not forgotten to pray for so many of you who are facing difficult situations either in your health or your mind. I continue to call out your name before Lord, coming against, fear, sickness and disease.

Andrew ~ Today

Edited to add: There will not be surgery today. No shunt today. No port today. Lab reports show bacteria so that will have to be dealt with first. No flu either. But I knew that.

WAITING ~ Andrew was scheduled for an 8:00 surgery this morning for a shunt and a port. The shunt goes in the head to drain excess fluid and the port was to be put in for the chemo drugs.
But last night he ran a high fever so fluid was collected and now we are waiting on the lab report on his blood sample. The nurse also had an order to swab for flu. So we wait and Andrew is thirsty and he is hungry. But we wait. Mostly we wait on what God will do.

ANOTHER DELAY ~ Last night and this morning I began to pray Proverbs 19:21: "Many are the plans of a man's heart but it is the purpose of the Lord that prevails."
We have to believe that when we pray in faith asking God for His will to be accomplished according to His Word, then we receive His will. So even though we want to avoid the shunt for lots of reasons, we have placed this day in God's hands. The doctor who was planning to put the port in came in early this morning to tell us it was too risky with the threat of infection. So we know the port is out for now. This will further delay chemo and radiation. For those of you who have been with us since the begining of the diagnosis, you know we have had many delays in cancer treatment.

PLANS ~ We don't know if each delay has been of God but we have to believe He IS ordering our steps. Again, "Many are the plans of a man's heart but it is the purpose of God that prevails."
FAITH ~ Anything you receive of God you receive by faith. Salvation, healing, wisdom, all things that pertain to life and godliness ~ all are received by faith. Then you keep walking by faith and not by sight. Faith is the substance of things hoped for, the evidence of things unseen. Faith is substance. Substance is matter. Matter exists. We speak those things that are not as though they are ~ evidence of things unseen.

Go forth today receiving by faith what you pray according to His will. We have His Word so we have His Will available. All you have to do is read His Word to know His will. His will is for us to have abundant LIFE. His will is to save. His will is to heal.
No doubts. No wavering. Stable dependance on Him...on His Word. Confident in our Creator.

Rizpah and the ROCK

Have you "met" Rizpah? Many years ago I heard about a woman named Rizpah. This mother literally guarded her sons night and day for months, beating off the predators that would desecrate the bodies of her boys. Rizpah was a concubine of King Saul and she bore him two sons. Seven sons, two of which were Rizpahs, were hanged to pay a debt to the Gibeonites. Their deaths were to make atonement between the Gibeonites and the house of Israel because of what the Lord called "Saul and his bloodthirsty house..." (2 Samuel 21:1-14).

Rizpah's story is recorded in just a few verses. These few verses are a summary of what I'm certain for Rizpah seemed a lifetime lived out in nightmarish conditions.
Rizpah's name literally means "hot rock." As her sons hung dead above her, she spread out a sackcloth for herself on a rock "from the beginning of harvest until the late rains poured on them from heaven." Rizpah guarded the bodies of her boys, keeping the birds off by day and the beasts off by night.
Can you feel her pain...both physically, mentally, spiritually and emotionally? Can you put yourself in her place...loving her sons even in death. Death could not sever the relationship between mother and child.
Rizpah went to great extremes to protect the bodies of her boys. To have the bodies ravaged by birds or wild animals was considered to be the worst possible insult and desecration of the dead.
And so, Rizpah denied herself the comfort of her home, to care for the corpses of her boys.
In what way will we deny ourselves in order to guard the bodies, spirits and souls of our children? I know that many times we deny ourselves sleep when our children are sick in the night. We deny ourselves things we need when our children are in need or in "want." We deny ourselves many times for the sake of our children.

But what we also need to deny is FEAR that threatens our FAITH. We must deny the lies of the enemy that question the authority and goodness of God. We must deny evil influence and ungodly access to the minds and hearts and bodies of our children.

We know the threats that exist in this modern world. Like Rizpah, we must make a place on a rock ~ the ROCK which is Christ Jesus. We must stretch ourselves further than we ever thought possible. We must stretch our faith and increase it through the Word of God. We must fight off the birds by day and the beasts by night.

Now almost 2 weeks in the hospital, my husband and I (and visiting friends and family) pray over our son as he lies in a bed with a tube draining spinal fluid from his brain. He battles headaches and dizziness and pressure behind his eyes. I tell him he is stronger than he has ever been and when he is on the other side of this, he will have a great testimony to share. He will have a great praise to lift up. He will tell others who may walk this same road, "I know how you feel" and it will be true.

We beat off the birds of depression and sadness from Andrew's mind. We beat off the buzzards that bring negative thoughts to rest on him. We beat off the beasts of infection and cancer. We bloody their noses and we kick out their teeth. We mark off a barrier that the birds and the beasts cannot cross. We have drawn a line. And we remain on the ROCK.

Steady On...

Edited to add:
I had a comment that questioned the verse I quoted from James. Yes, verse 5 is talking about "wisdom" but James' conclusion is "...for let not that man suppose that he will receive ANYTHING from the Lord..."
I think James says "anything" because he means "anything" including wisdom. But if he were only referring to wisdom, why use the word "anything"? I think James was making a point about guarding against vacillating between belief and disbelief.

A few years ago, my grandmother passed away at the age of 103. Before she passed, she had a huge tumor on the side of her face. It was disfiguring. My mamaw was ready to go on to heaven but the family prayed that she would be healed from the tumor before her journey "home." God answered that prayer and before she went on to glory, Mamaw's face was completely healed. There was no tumor at all! It was a Miracle.

God has instructed me to look only to His word. I must be obedient to that. When I look at His word, Jesus healed ALL who came to HIM.
This is MY child lying in a hospital bed. Medical intervention provides little hope for a positive outcome...that means there is not much hope for survival even with chemo and radiation.
This is life and death to us. We come to Jesus and Him alone for our hope. We do not look to the wisdom of man. We look to the power of God. My purpose is not to offend. My purpose is to go by the Word and that alone.

Yesterday I had a discussion with my daughter. We have had daily phone calls, FB communication and text messaging. She is a full time journalism student and works part time. She leads worship, playing her guitar. She is very protective of her little brother, especially now. We have been having deep discussions on the whole aspect of healing and miracles. You are probably not surprised that has been the topic of most of our family conversations.

Our family has no doubt that healing is God's will. Our family has no doubt that believing and not wavering in your confidence in God plays a large part in seeing healing and miracles manifest. James 1:6-8: "But let him ask in faith with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. For let not that man suppose that he will receive anything from the Lord; he is a double-minded man, unstable in all his ways."

Fix your eyes on Jesus. Believe His Word. Refuse to doubt that He will do what He says He will. Unbelief is the enemy of faith. Settle it in your mind! When you have settled it, don't allow yourself to become unsettled. Don't be anxious about anything; Pray about everything. Everything you receive from God is received by FAITH. We walk by faith ~ not by sight.
So, steady on...saints...steady on.

Andrew ~ Eating but needs to eat MORE or feeding tube is coming. So we have to work on this TODAY. Has had physical therapy twice today and a visit from Rosie the golden retriever who makes bedside visits.

The nurse told Andrew he could have cake and ice cream if he wanted it because they want him to increase his calorie intake asap. When she told him he could have sweets, he glanced at me as if I were going to say something about the sugar. Oh...he knows me well.

The last cultures they have taken did not show any new bacteria growing so that is a VERY GOOD REPORT TODAY!!!

Because of that report they have changed his antibiotics to one that is more specific to the infection he is fighting.

According to the surgeon we will be here several more days.

Wherever we are...the fragrance of the knowledge of HIM is spread everywhere.

Love to you all!