last July 21st

Last year at this time

I was in the hospital with Boaz.

(that's no surprise).

His 1st port had come loose

and they were replacing it. 

We had been fighting to get a feeding tube also. 

We got it since he was already in surgery. 

He had gone through three cycles of chemo

and the cancer had grown.

We were ready to get him off of it.

You can read the story of how it all 

went if you scroll through and look 

at posts from this time last year.

He was sleeping so soundly, 

they made me wake him to give him the

medicine that would make him sleep???

So he wouldn't cry when they took him.

No wonder he cried!!

The way it all happened was a miracle. 

God took care of every detail so that

he could get the new port, the feeding tube, 

and get away from the chemo.

This is pretty much right out of surgery.

Maybe a few hours later.

He was such an incredibly happy boy.

He just had a way about him. 

While we were talking to the nurse about 

the feeding tube, the nurses gave Boaz

a whole roll of orange ace bandage and 

he had Aaron wrap his turtle, COMPLETELY. 

But look at that smile!!!

Driving off from the hospital that day

was like growing wings.

I know the decision is different for everyone,

but I knew I couldn't continue to keep him

on the chemo, watching the tumors grow, 

making him sick, and damaging his 

precious little body.

Just a few days later you'd have 

never known he had surgery.

He usually had this beautiful smile 

on his face. 

That smile was worth lots of sleepless nights.

Stonewall and Boaz were constant companions.

This is within the week and he was

running around the park playing.

 

Bravery Hearts

It is hard not to think of where we 

were last year at this time

and what was going on.

The struggle for life that was taking place, 

the way our world was changing so quickly.

There were a few things that helped.

A few people that made a difference 

in this road we were on. 

While Boaz was in the hospital

for his first round of chemo, 

the "art lady", in charge of toys,

crayons, and generally seeing that the 

patients were as happy as possible 

and the parents as..................

Well, it's kinda hard to say relaxed,

that's definitely not the right word. 

This lady was telling me about a program

the hospital had for cancer patients.

The program was normally for four year olds 

and up, but she decided to let Boaz in it anyway.

It is called Bravery Heart Beads for kids. 

For each procedure they have,
an infusion of chemo 

or blood, each scan or test, surgery....
the list goes on and on. 

The nurse marks it on their paper and 

once a week the "art" lady comes around 

and gives the children their beads.

In my opinion, the children really do earn the beads.

There is one bead however that is different.

It is the "brave" bead.

Only a nurse or doctor can award this bead.

When they think the child has behaved 

bravely in a situation, they sign off the 

brave bead on the list.

All of the "B" beads are brave beads, 

which they ran out of. 

Each other particular bead being

for a particular event.

Boaz really liked his beads, 

though I doubt he understood the meanings.

Paige and his brothers liked them and

liked to look up what each of the beads were for.

Bravery Hearts also sells things 
to support the program. 

It is free for the children,

but is only at select hospitals. 

So, for Boaz birthday we bought Paige

a Bravery Heart necklace.

She definitely earned it, 

standing by his bedside for hours to keep him happy

just so I could think, or tend to other things.

Each one is unique, in that the beads are 
just placed on without a real order. 

But each on has two things the same.

A hand blown glass heart...........

And a small "bravery" bead. 

 I couldn't help but thinking how fitting that 

was for Paige, loving her brother through 

the worst, staying by his side when possible,

and being very brave through it also.

God allowed us some GOOD times!!!

Nick ordered one for me also.

Every time I wear it, 

I think of my little man, of his bravery, 

and the love the Lord allowed us to share.

*********************

 I had fainted, unless I had believed to see the goodness

of the Lord in the land of the living.  Psalm 27:13

 

   

 

not this time

Something in me changed one night in the hospital during Silas' 1st hospital stay. His platelets were low, I was alone, and he was doing badly. He was resting fitfully. I was watching for all of those horrible things they said could happen. He needed those platelets, but they were in Dothan, and wouldn't be there till morning! I cried out to God, fearful that I might lose my Silas. I told myself "I will pray my Boaz through the night". It was as if the Lord laughed at me. I thought, "what?????".The Lord was saying, "you think YOU can do something about this?" And at that point I realized how weak I was, and I began to get a vision for how strong my Lord is compared to..............me!
I realized I could do nothing for Silas Boaz, not on my own, not even "praying him through the night". Because I was acting in my own power, and I needed to rely on the Lord's. The Lord brought to my mind two verses of scripture, Exodus 15:3 The Lord is a man of war, the LORD is his name. That's my Lord, he likes fighting, its all through the Bible. And Exodus 14:14 And the Lord will fight for you, and ye shall hold your peace. God wasn't telling me not to pray, he was telling me to allow Him to do the fighting, and it is so much more restful that way. Of course I prayed through out the night, not just that night, but many, many, many nights to come. I used to think I was tired............... that was before I learned what tired was.
But God was teaching me lessons. Fast forward a little over five months. We've had some very good times with My Little Man. He felt amazingly good at times. Other times....... he had an infection in his port. Every time we'd use it he would spike a high, HIGH-105* temp within 15 minutes. He went through four surgeries. The infection moved to his bones, very bad. One week he's giggling and laughing, no one we meet can believe THIS is the child with stage IV cancer.The next week we're in the hospital, he quits standing. In my heart I knew the cancer had moved to his bones, but I ignored the advance notice I was getting and pretended it was from the high fevers. The next week he is saying, "I can't sit up." Now, I am very scared. Why wouldn't he be able to sit up??? By then I can SEE the cancer has spread, though I had no idea it was into his precious brain. He was so smart. Its still hard to believe, all that going on in his tiny body, yet he was so smiley, such a good attitude, so unbelievably well behaved!!! Later that week I could sit him up, but he was unsteady.

For some reason I felt the Lord was telling me something different this time. I reasoned, "he was worse when we found out he had the cancer in May", but the Lord was saying "not this time". I cried out to him, I fasted, I begged, BUT the Lord was speaking, I didn't want to listen. It went against everything we had been seeing happen. He'd been getting better.........................but the Lord was saying something different to me, something he'd never said before, "not this time". I knew the Lord could heal him if He wanted, I didn't lack the faith that He COULD heal him. I just knew what He was telling me........."not this time". How could I tell someone that he wouldn't make it??? He just got sick, He seemed a very healthy boy, despite the cancer we knew was in his body. We'd been watching the cancer go away.........."not this time". It's not something you can be ready for. I prayed the Lord wouldn't make him suffer long. I don't like to remember my little one laying in the bed those last few days and nights. That's not how I remember him. When I see Silas he is running through the house, chasing Sissy with the mop! Or he is grinning that mischievous smile, because he WAS ALWAYS up to something. Maybe he's wrestling with his "Uncle Tim"-his giant stuffed deer. He's bouncing on the trampoline, and making everyone else sit down! Or he's at church saying "Amen Preacher"! His old body is in the grave down the road, but Boaz is up in Glory. He's got some great friends up there and I can't wait to meet them. Sure, I miss him every day. I miss holding him till my arms ache. I miss running my fingers through his soft hair until he falls asleep. I miss his beautiful smile, and just having him near. I miss cheerios on the floor, and in the van seat. I miss his tiny hand in mine, and dragging his blankie around. I miss having to watch football, no matter who's playing. I miss fetching his cars for him after he races them down the track. I miss searching for his turtle at nap time, so he can play with the tag. I miss him saying "Hi Mommy" when I walk in the room.
I am sure I will miss him every day of my life. Some days more than others. Sometimes the sorrow comes in waves, like sea billows!! I praise God that this is such a short life compared with eternity. I praise God that I know my real home is in Heaven, and that Silas is already there. I will see my Little Man again, and he will once again be running, and laughing.

Where We Are Now

We are finally home from the hospital. Three times a day, I was taking Silas up to the hospital for his antibiotic infusions. After a week in the hospital an orthopedic surgeon did surgery on Silas to drain the infection. He kept some to culture and also did a biopsy on a spot. The cultures did not grow, likely because he had been on antibiotics for a week. The biopsy came back also. It was metastatic disease, a tumor. This cancer grows VERY rapidly. We havent killed it, we were just shrinking it. We had quit feeding it, and we were giving the body what it needed to fight it. When we had the infection in the last port we were not able to do the natural treatments. As of now, he has been without the natural treatments on a regular basis for too long.
His pedeatrition has been a huge blessing to us. After the minimum stay of two weeks in the hospital for antibiotics, we tried to wean Silas off of his IV antibiotics and go to oral. When we took him off the first one and all was well. But, when we took him off the second one he began running high fevers again, 104 or so. His doctor didn't want to keep him from his natural therapy any longer, so he discharged Silas on Saturday, allowing us to get the antibiotics outpatient.
Wednesday he began having sharp, extreme pains. By Thursday mid-morning it was too much, and the oral pain medicine wasn't working. I was afraid of bleeding on the brain also. We rushed him to the ER. They did a CT scan, which showed growth in the frontal region of the head. It is pushing on his optical nerves, and his brain. The doctors said that will cause the extreme pain he's having.
We have called in Hospice. He is doing better with the pain. We don't pretend to understand what is going on. Just three weeks ago he was running around playing like the other boys. We do know a few things. 1.God knows what he's doing. 2.This isn't a suprise to my Saviour! Before Silas was ever born God knew this day was coming. 3.We are not giving up on Silas! My God is a God of miracles. He can do whatever he wants. Which means he can also take Silas from us if he wants. Nick and I are ok with whatever the Lord chooses to do. We do not like to see Silas suffer. We will be fighting for Silas until he's all better, or the Lord chooses to take him to Heaven.

Payoff

Silas tumor on his head is shrinking, as you can see from this picture. I remember after the third chemo it seemed enormous (and it was). Paige had a good time just sitting on the beach.
We went to the beach the other day for about an hour. It was mostly empty, and clean. Nick had Levi and Caleb, so there are no pictures of them. My Buddy Buck is a hammy child!!
Silas was feeding the seagulls his sandy snack.

Josiah had fun burying Hunter.
Timothy and Silas were trying to make a sandcastle.

Last Thursday, Silas began complaining of his leg hurting when I would lift his leg to pull his pants up. By Friday afternoon he was limping, and at times didn't want to walk at all. I was concerned he might have sprained it, or worse. Though I'm having a hard time keeping him off of it. By Saturday he was saying his foot hurt. I know it's his foot, because he will crawl around playing puppy on his knees. Our pediatrician's office is opened on Saturday, so I took him in. The doctor wanted us to get a CT scan done (stat). But, you can't do that on the weekend without being admitted (NO WAY)!!! Silas' pediatrician made some phone calls and got it done right away. When my God takes care of things, he does it right. We got the scan done and were out of the hospital in about fifteen minutes. Thirty minutes later the doctor called to tell me the scan showed nothing, the scans were clear. He sounded surprised, and I realized then that he was looking for tumor growth. I am relieved, but now I'm still wondering what is wrong.
A few hours later I realize he said the scans are clear. The scan was from the pelvis area to the toes. He had metastatic growth in his legs. I am left wondering, does he mean no new growth, on does he mean my definition of clear? But it's Saturday and the office is closed. Also, these were preliminary results, though they were read by a radiologist.
I waited as long as I could, telling myself it will wait until I take Silas in on Wednesday. But, I couldn't wait and called the office this morning to see if their definition of clear matched mine. They called me back this afternoon and gave me the same answer. The radiologist says the scan "shows no metastatic growth". They do not know where the tumors were, so this may not mean anything to them.
We still want to get scans in another two months or so, more detailed scans. But, my God hasn't changed. He is the same yesterday, today, and forever!!!

A Quick Update

This is my favorite picture of my little Silas Boaz so far!
This is just a quick update, to let everyone know how things have been progressing. Silas has finished his third cycle of chemo. We did it at Sacred Heart in Pensacola to be closer to home. We were only there for five days, then we were able to come home. Silas had a reaction to one of the chemo medicines, but since there were no big hives, breathing problems, or such, they would not discontinue the chemo. I was very upset, and although they knew it, it doesn't seem to affect them at all.
They did redo the scans again after the chemo was complete, and found that the tumors are much the same, with increased activity (growth) on the skull. The survival rate for this cancer, with their protocol chemo is only 15%. Half of those (7.5%) get leukemia later in life, the other 7.5% have major side effects. There's not a lot of hope from the medical standpoint.
But, we happen to know things they don't. Most of all I know God, and he can do anything he wants. Silas hasn't had a fever at all this time. That isn't normal. He has had other expected effects, but not as bad as most people do.
Silas is having a good time, as usual, at home with his family We took him to the fireworks, and he really watched them. We met the Ungers there at the fire works, and Silas was happy to see his friend, Gracie. They did the typical 2-3 year old boy-girl thing I remember Josiah and Kelsey (Unger) doing, they are the same age also. Gracie bossed, Silas ignored her bossing and did his own thing, and they played anyway. It's quite funny to watch. The girl wants to boss, but the boy knows somehow, inborn I guess, that it isn't supposed to be that way then sometime around 3 or 4 the girl realizes what the boy knew all along. That the men are the bosses. After that there's not usually a struggle, and they are friends. That doesn't mean the boy always rules the friendship, that's not really a friend. Its just that the struggle for power is pretty much over.
Just on a side note, at Sacred Heart Hospital in Pensacola they have NEVER done a scan on a child without sedation. Until now! I didn't realize it was such a big deal to them, but I insisted he didn't need it He did all of his scans at Shands without it. The head doctor of radiology was very upset and almost refused to do the scans. They ended up having to make a note on his paper work that he did not move during the exam, despite the lack of sedation. Silas' doctor thought it was quite funny, because the other radiology doctor had given us such a problem about it. The tech said she'd never done a scan on a child without sedation, but that Silas was much better than most adults.
There is one pretty major thing we are praying about right now. If you could just pray that it would be taken care of, it would help Silas a great deal. When it happens, I can post what we're praying for!

Silas Boaz Today

We're learning more and more as we go. Some doctors know more about different things. The nurses mean well, but they do not always know what the doctors know. Boaz could go home in a few days, if all goes well. The chances of everything going well are close to zero. I could insist, and they would let me take him. I could do the treatments in Pensacola, I could go home in between. But, when he gets a fever, and he will, or his blood counts go down, and they are, then I want to be where Silas can get the care he needs. This is THE Children's Cancer Hospital. They are equipped to do things here that they can't do elsewhere. I miss my boys at home, but I realize that's what the Lord has for us right now. We will take it as it comes.
This is a physical battle. It is also a spiritual battle. Satan does not want us to serve God. He does not want us to be a bright light shining in dark world. But, that is our reasonable service. I love my LORD more each day. He is still merciful and gracious.

Quick Note

Little Boaz is now receiving the blood that was banked for him by Bro. Buddy and Aaron Maynard (we know we have the best church in the world)! About 10 minutes after starting it he turned over, got a car and played with it for a few minutes. Earlier he ate some thin pretzel sticks (one of our favorite snacks), a few bites of yogurt, and drank water from my bottle. He has refused drink for a week prior, no matter how cute the cups were. This is important, because they will not release him between treatments unless he takes in liquids on his own.
Clay and Mrs. Kim are updating their blogs as well, and probably more regularly. So, check them for info also. Must go watch my little one.
Thanks for all the prayers. I know I couldn't do it alone.
Psalm 121

Silas Boaz

First, I must say, GOD IS STILL ON THE THRONE!!!!!!!!!
I realize some of you already know some of what is going on, but I will try to be comprehensive, for those who do not. Little Silas Boaz is at Shands Children's Hospital in Gainsville, Fl. He has been showing some signs of something being wrong, and it progressed rather rapidly, on the outside. He has been diagnosed with neuroblastoma. It is a cancer of the nerves, starting in the adrenal glands. It affects children age five and under, some are born with it, like Boaz probably was. His started in his abdomen, in the left adrenal gland, and that tumor has pretty much taken over his abdomen. It is on his stomach, which we will deal with later. But, PRAISE GOD, it is not in any more of his organs. They are a little pushed around right now, but healthy! His secondary site is probably his head, which has about four spots, in the skull. This gives him much pain. He has been rubbing his head for a long time and always liked us to rub it. Now we know why. But, once again, God has chosen to protect his brain. GLORY TO GOD!!! God is merciful in all things. Then he has a lump under his arm (soft tissue), and in his arm, and leg (in the bones). It is not in his blood!!!! That is an answered prayer. PRAISE THE LORD!!!
We knew something was really wrong, but had no idea what. Of course, we never thought cancer. After all, he's two. By the time we got him here he had slept for days, only waking for short times, he had been vomiting for days, had lumps on his head (they all came up since Thursday, April 29th), wanted no one but me,and was severely dehydrated. But, my God knows things I do not. None of these things were a surprise to Him. He started chemo on Friday at 7pm. I know he needed that badly. Within an hour he was devouring Aaron's french fries. The next day he ate a whole banana for lunch, and a cup of yogurt. For dinner, he ate fries and part of my chicken sandwich.
I know we are sure to have rough time ahead. I believe it will be hard. My God is merciful. He could have taken him in womb, at birth, or any time since then. Nick and I gave him to the Lord long ago. And I have done it many times since then, especially since that first Dr visit when something inside said, "somethings wrong".
I will try to keep this updated. Sometimes I may have someone else do it. God didn't make a mistake. No matter what changes, God never changes.
GOD IS STILL ON THE THRONE!!!!