Wednesday, February 24, 2010

Radiation

Nathan has begun radiation!!! I can't tell you how amazed I am at this little boy. He's adapted to this new life so quickly. Today they asked if he wanted to ride in the bed down to radiation or in his stroller. Usually he's put to sleep before going to radiation but today he got to ride down awake, sitting up. He did fantastic!!! He just smiled the whole way down, there's a few ramps they go up and down while transporting and they run a little when pushing the bed up a ramp and he loved that.

Nathan actually seems to like going to the hospital. He gets so much attention and he leaves with so many toys.

And his appetite has improved. He ate 4 chicken legs today along with 3 of the stage two gerber peaches.

He's very helpful too, he's learned the routines. He puts the monitor on his own little finger he holds his arm up high for blood pressure and even higher for his temp. He hops on the scale when told and sometimes the nurses let him push his own liquid into his port. He's very happy he remembers.

There's no tears about going to the hospital and no fears when the doctor comes in only excitement. He usually can't wait to see the nurses.

Lord thank you so much that Nathan has adapted so well to this new lifestyle! Thank you that he's not afraid. Lord we again pray for you to deliver him from this disease. Thank you for Nathan's smiles right now.

In Jesus name
Amen




- Posted using BlogPress from my iPhone

Poem

I just wanted to share this poem one of my husband's aunts sent it to us and it is beautiful. I'm not sure who wrote it.

I just got word that one of my aunts died suddenly today of cardiac arrest, please pray for her children and grandchildren.

In The Valley I Grow


Sometimes life seems hard to bear
Full of sorrow, trouble, and woe,
It's then I have to remember
..that it's in the valleys I grow.


If I always stayed on the mountain top
..and never experienced pain,
I would never appreciate God's love
And would be living in vain.


I have so much to learn
And my growth is very slow,
Sometimes I need the mountain tops,
But it's in the valleys I grow.


I do not always understand
Why things happen as they do,
But I am very sure of one thing.
My Lord will see me through

My little valleys are nothing
When I picture Christ on the cross
He went through the valley of death;
His victory was Satan's loss.
Forgive me Lord, for complaining
When I'm feeling so very low.
Just give me a gentle reminder
That it's in the valleys I grow

Continue to strengthen me, Lord
And use my life each day
To share your love with others
And help them find their way.

Thank you for valleys, Lord
For this one thing I know
The mountain tops are glorious
But it's in the valleys I grow.


- Posted using BlogPress from my iPhone

Tuesday, February 23, 2010

Who Are These People????

"Nathan and Peyton can you come here please? We have to talk. I don't know how to tell you this...can't think of any way other than to just say it. It's about your grandparents. You know how they're always giving you stuff and letting you run free and smiling all the time? Well a long time ago, before you were born, those same hands that give you candy, used to whoop."

Sadly this is a conversation we're all going to have to have with our children one day so we have to prepare and practice for it the same as we do the birds and the bees conversation. We want our children to enjoy grandma and grandaddy but after awhile envy will set in. Even though we're adults we'll still see stuff and go "I wasn't allowed to do that." And we try to let our children enjoy themselves and form their own opinions but at some point we're going to break down and tell the truth.

Now my Dad is a very truthful man, although I question the validity of his stories about my dear sweet grandfather. He claims he was disciplined. Yeah right that guy wouldn't hurt a flea. I have such wonderful memories of him!!! I watched Michael Jackson at the Superbowl over his house and he gave me all the peanut butter cookies I could eat. So nice!!!! I bet he was that way his whole life.

Then my mom's Dad, so brave I remember him killing a spider with his bare hands!!!! Supplying me with all of the candy I could eat! I bet he never even raised his voice!

A lot of you have been wondering where Peyton has been spending time. Well she's in Warren with my parents. I dropped her off yesterday and witnessed her take off running through the kitchen, into the dining room, around the coffee table, back into the dining room and end up back in the kitchen!!!! And Dad smiled about it!!!! Who is this guy????

One day I'm going to tell her the truth. And I'm sure this cycle will continue, it's the worst payback a parent can give their child. You get taught structure your whole life by parents who for some reason feel the need to raise you right. Then you have your children and these same parents become unrecognizable and you try to tell your kids "how it was when we were coming up" and "you're not allowed cookies all day because I wasn't allowed cookies all day" but they brush us off because they go to see their grandparents and these people couldn't possibly have withheld sweets!!!!! I think there's a Bible verse on this but I have to search for it:-)

Dear Lord I come thanking you for my parents and their willingness to take Peyton in. I thank you she's with them, people who'll not only spoil her but love her because they love me. Now Lord give Peyton comfort Lord. Help her to continue to grow into the little girl you'd have her to be. And thank you for my parents who saw fit to raise me not as I wanted but how I should be raised (I put that part in there to score extra points:-). Grant me wisdom and guidance to be able to be good parents to my children as well. Thank you that in this difficult situation there are still so many good things coming out of it!!!! Help Peyton to continue to enjoy her grandparents, help her to continue to learn from them so that one day she can tell some wonderful stories about them, the same stories I tell about mine.

In Jesus Name
Amen



- Posted using BlogPress from my iPhone

Friday, February 19, 2010

God still hears

So Nathan had a rough night last night out here as you can tell from my post.

The hospital was pretty full and he was put in a room with a 17 year old. Nathan didn't go to sleep until 1 and they woke him up all night, so he'd wake up screaming and crying. I was not only concerned for Nathan but for the other young man in the room. Poor guy has to share with a three year old, what a HUGE age difference!!!!

This morning I peeked my head on the young man's side to see how him and his Dad slept. Immediately they started asking about Nathan. Turns out their names are Dave and Dave Jr. (same as my Dad and brother:-). Dave Sr. said he heard Nathan crying and it tore at his heart and he prayed for him last night!

Dave Sr. then said after praying he got a good feeling about Nathan's situation, he's not saying he knows the outcome, he can't see future but he said he has a good feeling.

The thing about it is I could see the sincerity in their voices. Dave Sr. said that he remembers when his son was that little and he's really close to his son, when he heard Nathan crying he wanted to help and decided to pray for him.

Wow Lord, thank you so much that while I was stressed out over Nathan's problems and my issues you saw fit to put me in the room with fellow believers. They heard the need for prayer and took the time to look beyond their issues and pray for Nathan on the other side of the curtain!!!!! Lord so many people have been praying for Nathan but at 3 am I'm sure most of them were at home sleep. I needed comfort last night, Nathan needed prayer and you saw fit to have us placed in a room with these two men who call you Lord.

Father I now come praying for David Jr. I pray that you touch his liver and heal him. Lord I thank you that despite having heart problems as a child you carried him this far. I thank you that he has a father in his life who loves him very much. Lord I pray for David Sr.'s fiancé who is going to be having some serious tests done, Lord I pray that everything comes back negative. I pray over their upcoming wedding Lord bless this wonderful couple!!! Lord I also thank you for Dave Sr.'s soon to be mother-in-law who stopped over to check on Nathan yesterday and today, who also took time to encourage us in your name. Give her safe travel back to Sandusky. Touch that family Lord! Remove all illness from them!!

In Jesus name
Amen

- Posted using BlogPress from my iPhone

Dear God

Dear God, where is my child? How can one little person change so drastically within a month? Where's the little boy who begged to go to Gymboree? Where's my child who couldn't get his shoes off fast enough at play group?? Where is he? Where's my child who begged to go to playgrounds, who jumped at the chance to be outside? Lord where is he, cause I can't find him. Lord please tell me this will be over in 43 weeks. Please reassure me he's going to overcome this and afterwards what will his life be like? He's changed so much already. Lord he's only three!!! Why put such a young child through something like this?? What did he do??? Why him??? And why do we as parents have to watch? Please bring back peace. Lord you haven't lost control just help me not to worry or fear. You love Nathan, right? You feel this pain too right??? I know you're all powerful, all knowing, but I just don't get it, I really don't agree with this situation. We were supposed to be going to Disney World in March, Nathan would've loved it. He's three Lord...I'm trying to understand right now but I just don't get it...

Thursday, February 18, 2010

Setbacks

I still trust God but I'll be lying if I didn't admit my set backs. I had a serious one Tuesday night and yesterday. I decided to go back out to carepages.com to 'check' something. Big mistake. A lot of my strength came in avoiding sites like those and I'd been doing good at that. My plan was to go out to read one thing but I ended up clicking around in it. Carepages.com seems to be a site for cancer patients (and many other illnesses I'm sure) but a site to go and find other peoples stories that are similar to ours.

I LIVED on carepages when we first got the diagnoses. I only set up an account but I spent time reading other peoples stories...but after reading several it became overwhelming and decided to take a break from it. I then noticed my mood lifted. I starting focusing on God's word again and found peace in it and was doing good.

So I don't know why I went back out there on Tuesday night but I did and it's at times sad, often depressing. I was actually about to read the Bible but decided to take a 'quick' look. It's amazing how quickly our mood can change when we look away from Christ to get answers elsewhere.

It reminds me of Matthew 29:25-31. Remeber when Jesus approached his disciples walking on water and they became afraid and the ever eager Peter said "Lord if it is you call me to you". And the Lord told him to come. Unbelievably Peter then too walked on water!!!! Can you imagine that??? Have you ever tried walking on water? If not try it in the tub tonight, see how far you go. But Peter was doing it, but then he began to look around...he heard the wind around him, he panicked and began to sink. He then cries "Lord help me." And the text says (NIV) immediately Christ reached out his hand to save him asking Peter, " you of little faith why did you doubt?"

I still have doubts at times, I don't doubt God's power but sometimes I do question if Nathan will be one that the Lord heals and that thought still hurts me. What will I do without my little man. People keep telling me about an awesome testimony we're going to have...I don't want this testimony.

Nathan couldn't sleep Tuesday night so I went in and rocked him, singing "Jesus Loves me". We also played a little and he was laughing hysterically (at 11 pm mind you:-). It was wonderful and it sounds negative but at times I do question how many nights I may have left. To see him and Peyton play together sometimes makes me sad.

It's hard to feel peaceful at times and when I take my eyes off of Christ it's almost impossible. I know what we want but still question what we'll get.

I'm at the hospital now, I have a love/hate relationship for this place, the people are wonderful and I made some lifelong friendships but at times I get mad that I met them this way...
I want all of our stories to have a happy evening.

Nathan's hair is starting to fall out and I get mad at that. I dread him getting chemo and radiation and I ask that God doesn't put him through these weeks especially if he's going to take him anyhow.

We were all supposed to go to Disney World in March. He should be running and playing not coming for Chemo treatments and radiation!!! He's only three!!!!

Lord I come to you highly upset and downright frustrated. Why him??? You could've let this happen to me, so why him. I'm already 30 and have seen a ton more than him. Lord I beg you for a healing, remove this cancer, let the chemo shrink it and the radiation burn it!!! Get this out of his body, please Lord. Step in and deliver Him. Lord let him grow old. Help me to once again focus my attention on you Lord. You promised you'll never leave us or forsake us. Carry Nathan through this Father. If this is to be his testimony then so be it Lord I just want him to be the one telling it. Lord once again give me peace in this storm. Remind me daily of my need for you. Lord before Peter began to doubt he was walking on water. I can do the impossible when I put my faith and trust in you but at times I need reminding. Remind me daily Lord who's in control since I tend to look away and Lord please help us to remember how much you love and care for Nathan and that you haven't left and never will.

In Jesus name
Amen
- Posted using BlogPress from my iPhone

Tuesday, February 16, 2010

Gaining

So you know how some people tend to lose weight when going through something...well I'm the total opposite. And it just occured to me that when this whole ordeal is over, I'm going to be as big as a house! I'm not starting this journey as a small woman to begin with. lol I get asked if I've been eating, unfortunately the answer is yes...i've been eating a little too well and a little too much. Sam's been eating good too but for those of you who know my husband, know he doesn't gain much...I wish I had that problem (trying not to covet here:-). Weight Watchers is going to get their money's worth when Nathan is healed.




- Posted using BlogPress from my iPhone

Sunday, February 14, 2010

Who's in control

I'm reading an interesting chapter in James Dobson's book "When God Doesn't Make Sense" (a must read by the way). Dobson uses the story of the disciples in the boat, you remember the one where a furious squall came about and the disciples became afraid and Jesus was asleep in the boat while this was going on. The disciples woke Jesus up asking Him to save them, before quieting the storm Jesus said to his disciples, "You of little faith, why are you so afraid?"(Matthew 8:23-26). Did you catch what I just said? BEFORE the storm was calmed Jesus says "why are you so afraid?"

Dobson gives a good commentary, he says "fear and faith do not ride together in the same boat. And He wanted them (the disciples) to trust Him even when facing death."

See this is why I love the word of God so much, though I've read that passage many times it just struck me that Jesus questioned them before calming the storm.

Our storm isn't over, it's actually still ramping up yet I'm amazed at the amount of peace Sam and I have been given. A lot of things about that story sticks out to me. Jesus then rebukes the storm and the disciples had to wonder in amazament who this man was that even the winds and waves obey him (Matthew 8:27).

I look at Nathan's cancer realizing that God is so powerful, He can speak to those cancer cells making them go away and they'd have no choice but to obey Him. He spoke this whole world into existence. As we're going through this chemo and radiation I constantly remind myself of who's the captain of this ship.

As I learn more about this cancer I've totally dedicated Nathan to Christ. Trusting Him with our son's life and actually it's brought me some relief. I can sleep again, smile, laugh, move ahead. I'm not leaning towards my own understanding anymore.

So many wonderful things have happened already, Nathan's eye is doing so much better. At times it almost look normal. I try to make going to the clinic a fun experience and Nathan seems to look forward to going there and since I know how vital this place is to his recovery I've been changing my attitude about going to. I'm actually thankful to be in Cleveland now, our hospital is amazing, and despite the circumstances I'm glad to have met the people we've met. I can't say enough good things about the medical team, I just thank God for them and pray for them.

Nathan has been doing pretty well the last few weeks, he gets tired more than he used to but that's to be expected. Peyton really keeps him going, I'm so thankful for that little girl and her innocence in this situation. We treat Nathan so delicate, yet she still whacks him with her foam sword :-)

Lord I just thank you Father for watching over Nathan. Lord, he's come such a long way since this started. I thank you for University Hospitals, I thank you for the Doctors, nurses, LPN's, child life specialists, and the secretaries. All of the people involved Lord I thank you for them and again Lord I lift up Nathan before you, I place him in your care Lord, I pray that you heal his little body. And Lord it's hard for me as his mother to always know what he's thinking but you know him better than me. You created him and you know him. I pray that you be his comfort as he goes through this, give him peace Father, remove any fear his little heart may feel. Go with him as he gets radiation. Take control of the doctors and nurses who'll be working on him. And Lord help us to continue to seek you first in everything we do. In Jesus name!

Amen
- Posted using BlogPress from my iPhone


Wednesday, February 10, 2010

Since December...

Since December three people (including Nathan) in my family have been diagnosed with cancer...all on the same side of the family too. I found out about the latest diagnoses on Monday.

I'm trying to write a blog around this...but honestly I don't know what to say...so for now I'll just end this post and try again later


- Posted using BlogPress from my iPhoneu

Sunday, February 7, 2010

Nathan's Cancer, what happened?

A lot of you are to waiting to hear from me just to know what happened. What lead to Nathan being diagnosed with Cancer?

SATURDAY January 2, 2010

This is my day to sleep in. Sam came into the room with Nathan and they both had their coats on. He showed me a lump under Nathan's left ear. "Have you seen this?" I hadn't. He told me that he'd already called the doctor and that he was taking Nathan in.

I prayed because the lump looked really weird. It was huge and hard. Sam called me on the way from the doctors office saying that it was a severe ear infection and medicine was prescribed. The lump was from the infection pushing up against the ear drum causing fluid build up.

So Sam picks up the prescription and they come home. Nathan is still acting normal. Life continues.

THURSDAY January 7, 2010

Nathan had begun waking up during the night. Sam and I have never had an ear infection so we're figuring he'd been waking up from that. We talked to several people who told us they can be very painful and it just made sense.

I went into his room though early Thursday morning and it looked as though he had a stroke...it was very slight, I almost couldn't see it, but something was drooping, so I called Sam in to confirm and again the doctor was called.

Nathan was taken back to the doctor and diagnosed with Bell's Palsey. A condition where the face can become semi paralyzed due to an infection. Also his prescription was increased. We went home and of course I jumped on the internet because I'd never heard of this and I found it. Bell's Palsey can occur after an infection. Makes sense.

The new prescription given was supposed to be a 10 day prescription. I was told he should gradually begin to get better. We were told though that the Bell's Palsey would talk awhile to heal. A follow up appointment was made for January 19, 2010,

THE NEXT WEEK STARTS

Nathan slowly started acting worse. We were told that the prescription would knock out the ear infection and that we could give him tylenol for pain. The fussiness should begin to go down.

Again Sam and I have never had an ear infection and we talked to a lot of people who did that week and they said that they are excruitiating.

Over the next week Nathan quit sleeping. He quit eating. Actually he went in the cupboard and found some old baby food and begged for it and I gave it to him (I didn't even know it was in there). He was being potty trained and doing well at it but he quit wanting to do that.

TUESDAY January 12, 2010

Nathan was walking around the house begging to be carried crying almost constantly...It didn't make sense. Then he went and laid on the couch, something he NEVER does. So I called the doctor and they said to bring him in at 4:00 pm. I got off the phone and called Sam at work. While I was on the phone with Sam Nathan pops off the couch and starts walking around. Ok, I thought maybe I'm overreacting. I've never had an ear infection, maybe I should just wait until the follow up appointment. So I call back and cancel the appt.

WEDNESDAY January 13, 2010

Sam looks at Nathan late that night and questions the movement of his eye. Not sure but it looks like it's moving incorrectly on the side that has Bell's Palsey. Nathan has quit sleeping in his room and started sleeping in between us. His ear infection seemed so bad that we figured we'd let him sleep with us now and just break the habit later. It seemed to be helping him having him sleep in between us.

That night I give him some tylenol and we all go to bed.

THURSDAY January 14, 2010

Nathan is waking up every 20 minutes holding his head crying screaming "Help Baba!" Scares us half to death. We rock him and he's able to go back to sleep.

At 6:00 am we wake up (Sam's working from home this day) and we have a long talk. "Sam to me he's getting worse not better" Sam tells me "But by my understanding ear infections are pretty painful" I say "I know but I'm not comfortable" Sam says "Then we'll call again."

I call his doctor and he tells us to bring him in again, he may be resistent to the medication, which happens. So Sam takes him.

Sam said that when he got there the doctor checked his ear and said "that's funny, his ear infection actually looks better..." Sam told him about all of the personality changes we've been noticing. Then Sam said "Dr. get down in front of him and move in front of him so that his eyes follow you because it looks to us that his eye isn't moving correctly." The doctor does it and Sam said his entire demeanor changed. He said that has nothing to do with Bell's Palsey or an ear infection and he stepped out to make a few phone calls.

Sam was then sent to Marymount hospital for an emergency CT scan. He called me on the way and I started praying. After a horrible week and him saying what had happened so far, I knew in my gut that something was seriously wrong with Nathan.

About 2 hours later Sam called and said "what are you doing? Whatever it is drop it and meet me at Dr. Yeh's office right now, they found something on the CT scan" He said that the doctor doing the scan didn't even let it run for more than two minutes before he shut it down and called our doctor and then told Sam to go back to our pediatricians office because something was found.

I was hysterical. Literally. I called my neighbor and she sent her daughter to get Peyton and another little girl I was babysitting and I did 80 mph all the way to the doctors office.

When I got there the entire office was empty, cleared out for us. The receptionist sent me back to where our pediatrician was with Sam and Nathan. When I saw Sam I knew something was seriously wrong. My husband NEVER cries and tears were streaming.

Our doctor briefly explained that we were to go home and pack our bags and head out to University Hospitals where an Oncologist was waiting. ONCOLOGIST????? WHAT???? Why is an Oncologist waiting for us??? I started asking him what it was they found but he said that they didn't know other than it was a huge mass in his head. Everything else he said was a complete blur.

I remember walking out of that office crying, the receptionist grabbed me and hugged me but I didn't care.

I got in the care and called my father in tears and he said they were already on the highway.

My parents reached the house when we did and got Peyton, we packed quickly and went to the hospital.

We were admitted onto the pediatric Oncology floor.

FRIDAY January 15, 2010

Nathan is put to sleep to undergo an MRI and more detailed CT scan. Whatever this mass is, it's growing pretty fast.

We met a huge team of doctors etc. Cleveland may be known as one of the poorest cities in the country but it ranks at the top in medical care. One of the best pediatric neurosurgeon's in the world is at University Hospitals so as far as medical care went I knew we were in the best spot for this horrible situation...but I still didn't want to be here.

Later that night we sat with the Oncologist and met the Ear Nose Throat Surgeon and his team. A biopsy was going to be done in the morning on Nathan's mass and we had to be told about the risks.

The Oncologist then sat and talked to us. He told us, it's actually unethical for him to tell us this but based on the mass and the way it was pushing through Nathan's bone he's more than positive it's malignant. I broke down crying immediately. I didn't want to hear this!!!!! My son is three!!!!! Cancer!!!!!! This happens to other people! Not us! I planned this family! It's perfect! He has to be wrong!!!!

The doctor left to give us some time to digest this. When he came back he walked in with Dr. Barksdale...(Yes world renowned Dr. Barksdale). Our Oncologist introduced him to us. The reason why they were telling us tonight that they thought the tumor was malignant was because they wanted to move forward with putting in a metaport right after they did the biopsy. Dr Barksdale would do this. What they would do is take tissue samples and look under the microscope and if it was malignant they would put in the metaport (device used for chemo therapy). The reason they wanted to do this is because Nathan's mass was extremely aggressive and growing rapidly. Waiting to put in the metaport would delay chemotherapy. No matter what we had to wait until Tuesday January 19, 2010 when we got the exact name of the cancer but when they come back with a diagnosis they can immediately start chemo. If we wait on the metaport that would delay chemo because we would have to have surgery again to have the metaport put in. It was left up to us.

Believe it or not this was a hard decision for us. I knew before the biopsy that the tumor was malignant. Our Oncologist said he hopes he's wrong and we did too, but honestly I already knew in my gut he was right. But actually moving forward with a metaport was hard for me to accept. We felt like by saying yes we were accepting cancer before it was actually stated, so honestly we talked about this all night. In the end we decided to have the metaport put in. If this turned out to be cancer and if it was as bad as the doctors are saying then we'd rather not have chemo delayed by another surgery so we gave the doctors our consent to put in the metaport.

SATURDAY January 16, 2010

The morning of the biopsy. The Ear Nose Throat doctor came to talk to us before Nathan's surgery and showed us his MRI...

This mass is huge. So big that it's pushing everything in his head over to the right. When we got to the hospital one of the questions we were constantly asked was "how was Nathan breathing at home?" Now I understood why we kept being asked that. Another couple of weeks and he wouldn't have been breathing at all. EVERYTHING was being pushed over. They estimate the tumor hadn't been there long but it was growing fast which is why we saw such a change in his personality so quickly.

Nathan was then taken off to surgery. I started feeling sick. I went out into the hall and I just cried, I didn't care who saw me, it's like no one else existed. I just cried. The week, Nathan had fought me when getting his teeth brushed. I honestly thought it was a toddler being bad. It wasn't though. It was because it really really hurt him to have his teeth brushed. He had been in that amount of pain and I really as his mom didn't know it and that hurt me so bad. I'm supposed to protect him right? I'd made an appointment on Tuesday. Why did I cancel it???? I was inconsolable. Later on a nurse who'd passed me came and gave me a huge hug. She said she'd saw me earlier and didn't want to impose but she knew that I needed that...and I did.

After surgery Nathan was so weak. Our son is strong. He's tall for his age, handsome and he hardly ever gets sick. It was too much for Sam who cried again. I'm not used to seeing tears out of Sam, all of it was so overwhelming.

The Oncologist came and confirmed our worst fears. The Tumor in Nathan was malignant.

SUNDAY January 17, 2010

This was supposed to be a day of just waiting. But at three in the morning Nathan was up crying and I called his name from right in front of him but he wouldn't look at me. In fact it looked as if he was searching for me even though I was holding him. Sam and I called the doctors in and asked them if he was losing his sight, it'd never occurred to me before but suddenly it dawned on me that it was possible for Nathan to lose his sight and that scared me.

The doctors came in and said he could be acting that way because he was disoriented and on morphine but they weren't taking any chances and ordered an emergency CT scan at 4 am to make sure the tumore hadn't moved. There wasn't time to sedate Nathan for it and he did great. Thankfully the tumor hadn't grown.

Later that morning two Optometrist came to check Nathan's eyes. To make sure the left eye was still responding (his tumor is pushing against that nerve) and to make sure the right eye isn't being affected. So far everything checked out good. But he did tell me there is a possibility that Nathan could lose sight in his left eye.

MONDAY January 18, 2010

Nathan has to get a bone scan and a spinal tap as well as bone marrow taken to check and see if the cancer has spread. Also while he's sedated the Optometrist Oncologist is going to check his eyes.

TUESDAY January 19, 2010

Results day. Dr. Amma, Dr. Sterns, and Barb (NP) come in to tell us what kind of cancer Nathan has.

Rhabdomyosarcoma. A rare cancer that strikes only about 350 children a year, most commonlin children under the age of 6. This is a total nightmare. I began to feel so sick. I wanted to wake up. But I couldn't.

Survival rate is 65%. This isn't happening. Nathan's is in a spot that is inoperable. The plan is 43 weeks of chemo and 4 weeks of radiation. Prayerfully the radiation knocks it out or at least minimizes it so much that there's a chance to operate.

WEDNESDAY January 20, 2010

A Pet scan was done to determine if it's spread to any organs.

THURSDAY January 21, 2010

Nathan has his first day of Chemo therapy (from which he got really sick)

TODAY

And that's where we're at right now. Nathan has stage 3 Rhabdomyosarcoma. So far there isn't any evidence that it spread anywhere else, but it's in a very bad critical spot.

It's important to note that his pediatrician never mis diagnosed him in the beginning. Nathan DID have a severe ear infection, he DID have Bell's palsey and Sam and I count those two things as blessings in disguise, if that hadn't happened then who knows how much more this tumor would have grown before we caught it

So here we are. People ask how we are. Our three year old has cancer, we're horrible. It's hard to comprehend and it's hard to grasp. I'm learning what's important in life. We say we know, but trust me you really don't until that life is being compromised. Nothing else matters right now because my worst fears have already come true. Every other problem seems small right now. Nathan's speech problems...not such a big deal anymore. Half the time I don't even know what day it is. All the money in the world means nothing. I only want one thing and that's for our son to be healed. I want him to grow up and outlive me. I could care less about money, no matter how much, I don't care about a bigger house, a better school district. Absolutely nothing. I wouldn't be able to enjoy those things if Nathan isn't here to enjoy them with us.

Know this though, for those of you taking this hard as well. God is in control. Even though it may seem as if He's silent. He's in total control. No matter what He decides, whether He heals Nathan or not, He's still in control. He loves Nathan, more than Sam and I ever could and He hasn't left and He never will. I don't want anyone hearing our situation to start to doubt our faith or your faith in all of this. We serve a mighty God. Bad things happen on this earth and unfortunately they're going to continue to happen. If this hadn't happened to us it would've happened to someone else. And I'm learning there's a TON of Someone else's out there. Truthfully our son's situation can go one of two ways. But I do know that God is loving, He is gracious, He is Alpha and Omega and even though we don't understand all of this we do rest assured that He knows our pain (don't forget He watched His son suffer and die on the cross) and He hasn't left. No one enters into the Kingdom except through Him. God is the only one who can heal. We have a wonderful medical team and Cleveland leads the way with the nations best hospitals but even that doesn't matter if God decides not to heal Nathan. I pray He does. No one prays that more than Sam and I. No one wants to see our children grow up and live life more than us. But NO MATTER WHAT know that God is real, He loves us and He still hears.

God Bless

New Blog

Hi! I decided to start this blog specifically for Nathan's cancer Journey. I'll no longer be posting updates on my other blog, just on this one. I brought a few posts over from the old blog which is why there is a ton of posts on the same day. Keep following and God Bless!

LaToya

Surprises

So Nathan had to go to the hospital on Monday to have his blood counts checked. He's getting a shot daily at home to boost his blood counts as they tend to drop after chemo. Anyway his counts had to be checked because this shot has the possibility to boost his counts too high. See we're still new at this, when we went last week his counts hadn't changed but they wanted to check him Monday because if they wait until Thursday they may boost too high. (I know my explanation needs work, I'm new to this). If the counts are too high or out of the range of what we consider normal then side effects can occur like bone aches.

Anyway when I got there Monday I asked if they were going to take blood from Nathan's port. The nurse said they could though they'd prefer to take to from the arm or finger. The least amount of times they access the port is better because it lowers the infection risk. So I knew taking it from the arm was out so I told the nurse we'd try his finger.

I was sooooooo nervous about this. Getting blood from Nathan is next to impossible but we'd never done his finger. But guess what??!!!! He did fantastic!!!!!!!! He didn't even flinch!!! I was soo proud of him. I pray it's this easy in the future. His counts were high so the shots are stopped for now.

Tomorrow is chemo. Please pray that his blood counts are good, pray for strength for Nathan. He left Monday in a great mood, saying bye to everyone with a huge smile, it was really cute. His hair is bushy, Sam decided not to cut it yet until it starts falling out but it looks kind of cute. I really love that little guy!


- Posted using BlogPress from my iPhone

One Day

One day I swear I'm going to return every one's calls. One of my BFF's told me to just write for now. I honestly wish I could talk and some days it's easier than others but it's hard. I think I put up a good front. Not all of it is a front though, there's definitely some strength there but at times I'm really weak. Last night I came across a picture of Nathan, we were at Preston's Hope a park here in Cleveland and in the picture Nathan is walking into a big house that's on the playground. I took the picture from behind and his little arms are open and he's in mid stride and there's this big opening and he's heading in and I don't know why but for some reason I had a vision of him walking into glory and of course the tears began to flow and now when I cry it's horrible. I cry like I never have before. I can feel it in my stomach it's so painful. I went in the bathroom so I wouldn't disturb Sam and I just cried myself sick literally. I feel as if this is a nightmare. And I've gotten so many kind words and acts of kindness thrown our way but it doesn't help. I know God can fix this. I know He can heal Nathan and I know he could do it right away. So why is He stalling? I don't know. I still trust Him. Honestly I have no where else to go but to Him and that's where I've been. Begging God to spare our child. I literally pleaded with Him not to take Nathan's life. Honestly a car accident would be better than this. I've watched Nathan suffer so much already. They have to put him to sleep everytime they do a lot of CT scans and MRI's because he's too young to understand not to move. Have you ever seen anyone put your child under? Every see your child go from screaming to crying to just floppy limp? Have you ever seen your kid have out of it calling for his Dad? Have you ever had to send your baby away over and over into the hands of strangers, knowing they're going to be probing him etc and you can't go in to protect them.

To do the CT Scan to measure for radiation they had to put Nathan asleep and bolt his head to the table...literally. They do it with a mesh facial mask that they wet in water and quickly put on your face to mold it to the shape of your face. They do this because when they get radiation, they absolutely cannot move so he'll be put under to get the radiation that will last everyday for 4 weeks starting feb. 15. We were in there when they put the first facial mask over his face and they closed his mouth and were molding the mask but he had been breathing out of his mouth instead of his nose so the Doctor in the room had to quickly have them unbolt the mask because his oxygen level went down. I was so thankful for that doctor. Have you ever had to give your child an injection? It hurts enough to watch the doctor do it but imagine giving a 3 year old a shot every single day.

Some people have suggested I talk to someone... well talk to who? Some specialist who've never experienced having a sick child? I don't think so. Maybe in the future I'll talk to someone but not now.

I want to scream over and over but I can't, it's not helping. My child has changed, he's sick and it's almost like he's sad. I just got off the phone with my husband who said that he's calling the doctor because he still feels like they're missing something. He said even if we have to bring him back today he wants him looked at. So I'm here getting our clothes ready. I hate life right now. I want to love it but I can't if our child isn't well.

I hate to sound like I'm contradicting my last post but get used to inconsistencies if you're reading this. Some days are OK and some are horrible.

Song

So my wonderful Hubby has banned me from listening to the below song, only because I cry everytime I hear it lately. The words are just beautiful and I've been playing it on repeat. I don't know if it's helping or hurting either but I do know the tears flow whenever I listen to it. Something about that wonderful name moves me :-) I'll write more tomorrow because it's getting late and I have to tuck in, but Nathan had a good weekend so I'll tell you about it tomorrow! God Bless

Can I do This

I have a horrible migraine. I want to sleep and at the same time I don't want to. I'm just wondering if I can do this. I know there's no choice but Lord can I do this????

Chemo is tomorrow and Nathan is starting to act better. But Lord next week is his hospital stay when he'll be knocked back down again.

I just found a survivor story online. I contacted the mother who left a number for me to call her. Her daughter's situation was similar to Nathan's. But Lord as I read her journey online, the ups and downs, I just don't know if I can do this.

Lord I need strength so badly, not sure if I can do this. It's still the beginning, but Father I don't want to go through this.

What if Nathan gets a fever? What about the side effects from radiation? What about the sores in his mouth from Chemo? Lord the nausea? I just can't do this.

Lord how will I know what is causing him pain? His vocabulary is so limited, how will I know?

Lord give me the confidence of Shadrach, Meshach, and Abendigo when they entered the furnace. Grant me just 1% of Solomon's wisdom. Give me the same heart as Hannah help me to entrust my only son into your care.

Lord you love Nathan. You made him and you know him. Give him peace. I'm not sure how much his young mind can understand right now. Heal his little body. I know we have to go through but Father please go easy on him. Calm him Lord. Hold him in your arms.

Lord is there anyway I can take his place? Can I please take his place, my life for his, my body for his?

Spare my child Lord. I know I don't deserve to have this answered any more than the next person. But I'm going to be asking it for awhile. Please spare him, let him grow up, get married and grow old serving you.

I know you'll get us through this no matter what. Lord you talk about peace that passes all understanding, Daniel had it in the lion's den, Paul wrote about being content. It exists, I know it does, Lord I need that, not just for me but for Sam and Nathan also.

Lastly Lord I thank you. I thank you for blessing me with my children. I thank you for a wonderful child like Nathan. Lord strange enough I thank you for trusting me with such a huge responsibility, especially since I don't trust myself. I thank you for a Godly, strong husband like Sam and a bright beautiful innocent daughter like Peyton. I thank you that Peyton is to young to understand this. I thank you for friends and family who have surrounded us. I just thank you for hearing my prayers. I thank you for everyone taking time to pray for us. There's so many people out there praying similar prayers I just thank you for the opportunity to present mine.

Lord help me to do this. To be strong for Nathan, it's such a long road I don't want to crash and burn now. Lord just please help me do this. In Jesus name Amen

How to Discipline

Nathan took a flying leap off of the couch today!!!!! Sam and I were so happy but then something occurred to us...he's not allowed to do that!!!! Then I got to thinking of something else - How in the world do you discipline a child going through chemotherapy???

Now my doctor told me that I have to still discipline like I would if he were well. That advice has been some of the best ever, it helped us teach Nathan to listen to the doctors, especially when things are being done to him that are painless (such as blood pressure) and it's helped.

But I used to believe in time outs and sometimes spanking but spanking Nathan right now just feels weird (I would say whoopins but I don't know if that's politically correct:-) Peyton of course has noticed us let up a little and is taking full advantage of this situation.

But also the doctors point out that what Nathan is going through can be traumatic to adults so who knows what it does to a child. And we have noticed changes in Nathan's personality, so much so that when the 'old' Nathan shines through and he starts cutting up, it actually bring us joy, weird huh. Now I wouldn't go visiting other people now, not sure they'd feel the same way we do :-).

My only fear is starting bad habits. Nathan has to eat a ton of calories while on chemo. I was actually told the more fattening foods the better. Plus chemo changes your taste buds, things he used to like he now hates. Actually he only wants pringles...so for two days he ate pringles for breakfast, lunch, and dinner...I know this was a dream come true for him but I had to talk to his dietitian about this because we felt he was getting away with murder. Poor Peyton begged to do the same but we didn't let her. When we went back to the doctor I was told he gained two kilos (whatever that means), but he had a heavy sweater on too, I refuse to give pringles any credit.

So that's what's on my mind today. I'm trying to maintain some stability around here not easy but has to be done. I haven't got my formula down yet, I'll update more when we do.

Miracles

I was reading the Bible today and for some reason a passage stuck out to me:

46Once more he visited Cana in Galilee where he had turned the water into wine. And there was a certain royal official whose son lay sick at Capernaum. 47When this man heard that Jesus had arrived in Galilee from Judea, he went to him and begged him to come and heal his son, who was close to death. 48"Unless, you people see miraculous signs and wonders," Jesus told him, "you will never believe.". 49The royal official said "Sir, come down before my child dies. ". 50Jesus replied, "you may go. Your son will live." The man took Jesus at his word and departed. 51 While he was still on the way, his servants met him with the news that his boy was living. 52When he inquired as to the time when his son got better, they said to him, "the fever left him yesterday at the seventh hour." 53Then the father realized that this was the exact time at which Jesus said to him "your son will live." So he and all his household believed. John 4:46-53

Now the verse that most stuck out to me today was 48. To dig a little deeper I went to my MacArther Bible Commentary for an explanation, here's how he explains it:

48 Unless you people see signs and wonders. The "you" is plural. Jesus addresses these words to the Galileans as a whole and not just to the nobleman. The response of the Galileans was fundamentally flawed because it disregarded the person of Christ and centered in the need for a constant display of miraculous signs. Such an attitude represents the deepest state of unbelief.

Now let's look at another story:

5When Jesus had entered Capernaum, a centurion came to him, asking for help. 6"Lord," he said, " my servant lies at home paralyzed and in terrible suffering." 7Jesus said to him, "I will go and heal him." 8The Centurion replied, "Lord, I do not deserve to have you come under my roof. But just say the word, and my servant will be healed. 9For I myself am a man under authority, with soldiers under me. I tell this one 'Go,' and he goes; and that one, 'Come' and he comes. I say to my servant, 'Do this,' and he does it." 10When Jesus heard this, he was astonished and said to those following him, "I tell you the truth, I have not found anyone in Israel with such great faith. 11I say to you that many will come from the east and the west, and will take their places at the feast with Abraham, Isaac and Jacob in the kingdom of heaven. 12 But the subjects of the king will be thrown outside, into the darkness, where there will be weeping and gnashing of teeth. 13 then Jesus said to the centurion, "Go! It will be done just as you believed it would.". And his servant was healed at that very hour. Matthew 8:5-13

The thing that really just grabbed me was in John the man didn't believe until the miraculous sign was done. Do we realize who our God is?? Do we really? (I'm including myself in this 'we'). Do you have any idea the amount of people God has healed from cancer???This is huge to us, but to God it's nothing. He told Lazarus to come forth, goodness He raised himself from the dead even. We don't need to question God's ability. I just like to read the Gospels sometimes just to remind myself of who I serve.

I've always loved Matthew 6, now it's taking on a new meaning. The Lord covers so much in that chapter but I especially like starting at verse 25 where the Lord tell us not to worry. And He didn't make it optional which always struck me as odd. How can we not worry???? But in verse 33 He gives us our answer, He said to seek Him first. Instead of pondering or worrying we're supposed to spend time we'd waste on that seeking Him.

And you know what, so far I've found it helpful. I thought before if I ever was in a situation like this I'd go crazy. I truly thought an issue like this would do that. Sam and I were just talking yesterday about this and believe it or not the conversation was around "how are we still standing?"

For those of you who are truly praying for my family please continue. I was talking to my friend yesterday and she asked if I had peace because that's what she's been praying for, that the Lord will give me peace. At first I'm thinking , I still don't have peace but then it hit me after we got off, I actually did sleep sound the last three nights, there's been a TON of laughter this week even through two hospital visits and truthfully I don't dwell on this situation, I do think about it of course but Sam and I are moving forward...yes I'm starting to feel better. So those of you praying, it's getting heard, please don't get disappointed if God doesn't answer our prayers the way we may want.

I'm loving our Savior right now, this situation stinks but He's teaching Sam and me so much. We thought we already knew but there's so much we just didn't know that we're learning through this. I'm reading back through Matthew and John I'm looking at not only how God healed but the way people approached him. We often quote how God healed the blind man but what did he say to him in the process. What did Jesus say to the man lowered in on the mat? How did he address Mary and Martha when he arrived at Lazarus's tomb? And too don't you know God could've stopped the beheading of John the Baptist??

We're talking about God who created the heavens and the earth just by speaking. The same God who rebuked the winds and the waves.

I truthfully just started this ride I have no clue how hard the journey is going to get and honestly I'm not going to spend too much time thinking that far ahead anymore. But I'm comforted knowing who's in control of this situation and that He's not only going on this ride with us but commanding the ship.
- Posted using BlogPress from my iPhone