Happy Birthday Nathan!!!!!!!!!!!!!!!!!!!!!!!!!!

Nathan will be 4 tomorrow (December 6th)!

Seriously at the beginning of this year I didn't know if Nathan would make it to see his birthday but by God's grace not only has he made it but he's doing really well!!!!! Thank you Lord!!!!!

A Good Day

Well I didn't run into Mrs. Margaret yet, BUT I did happen to run into my buddy from the playgroup!

Remember the lady I told you about in an earlier post that encouraged me saying Nathan still has a chance? Well she'd given me her number back then to call her and in all of the madness I lost it and I happened to be out and ran right into her!

Publish Post

I was soooooo happy to see her and her little ones! LOL we were so loud when we saw each other cause it's been so long and her first questions of course were about Nathan. I miss Nathan and Peyton's playgroup so much! It was such a happy reunion and we did exchange numbers and I programmed it into my phone this time so I will definitely keep in touch. She was encouraging as always, it made my day.

God Bless

Welcome To Holland

I just stumbled up on this beautiful Essay written by Emily Perl Kingsley whose son was born with Down Syndrome in 1970. I was actually reading a blog on Apraxia that mentioned it. I hope you enjoy it as much as I have. Parents of children with special needs will especially love it.

God Bless

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Remember to Pray tomorrow

Nathan didn't get the best results back on his last scans, they ended up being considered inconclusive. I didn't share them on the blog because they were pretty confusing.

Anyway they're redoing them tomorrow (well today, it's after midnight here). I'm just asking for prayer for Nathan.

Sam and I have put the entire situation in God's hands once again and for now we're at peace. I've been praying for a total healing for Nathan and I know a lot of you have been too. It's in God's hands.

Dear Lord,

I'm trusting you with Nathan. I know the scans are tomorrow and I'm placing him in your hands once again. I pray over the doctors and nurses involved. I pray that everyone has gotten the proper sleep and have a clear head so they can do their jobs properly.

I pray over Nathan who has to be sedated. I pray that you be with him as he goes to sleep and wake him up gently as you've done every time before. I pray for him when he's alone with the doctors and technicians. He'll be out of my sight but always in yours. Please protect him Father.

Lord I know what you're capable of and you know what I've been praying for all along.

If Sam and I get anxious again over the next week or worried I pray that you remind us again who you are, what you've already done and that you're in control. Lord every time my mind wanders I want to be reminded about who I serve.

Thank you for your word Lord.

Bring comfort to Nathan. I'm still not sure how much he understands or what he thinks about but you know his every thought. Fill him with peace. Guard his thoughts and heal his precious body.

In Jesus Name

Amen

Going to the Airport

So this is a story that I must share. Today Nathan went to an event called Wings of Wonder at the airport. It was absolutely wonderful.

We met the founder, Maria and her father and her story blew me away. Maria had her pilot's license and was on her way to becoming an Air Force pilot. She was preparing to leave for basic training when she got the cancer diagnosis that halted her plans. In 2003 she started Kids in Flight. She said all of her troubles always seemed so small when she was in the air and wanted to share that experience with children and their families with chronic illnesses.

Her story is so touching because it shows how God can redirect our lives. Maria thought her calling was to fly in the military but God had another plan and now she's helping tons of families just like ours.

It's funny because lately Nathan has been heavy into helicopters and has been running around the house with a toy helicopter. Then this past Monday he found a toys r us magazine that came in the mail and began begging for a train and a helicopter.

Well fast forward to today as soon as we get to the Wings of Wonder event there was a wonderful train exhibit where the children were allowed to work the trains and blow the horns etc. You should've seen how Nathan's face lit up. Next a helicopter flew in and landed right in front of him!!!!! He was literally on cloud nine!

There was so much to see and do! And in a few months Nathan gets to go back for his very own plane ride! I cannot wait to see his face!

I'm so thankful to Maria and her family for this event. It was amazing. As we were leaving Maria invited us to a fund raiser that was held this evening. Since Nathan's counts are ok and the crowd was full of people who understood the compromised immune system thing we accepted! And I'm so glad we did. It was an amazingly uplifting event. A lot of the volunteers from the afternoon were there (most of them were family members). And Nathan and Peyton were able to play with balloons and there was a live band and they were dancing and squealing. It was amazing.

Honestly I'm struggling to put into words our experience today. Sam and I said on the way home that we didn't even know how we were going to explain to people what happened today and the impact it had.

We spent a lot of time just talking to people who genuinely care for other people. The humbleness of this family was unbelievable. We definitely plan on keeping in touch and they told us to let them know if there's anything we need and honestly after a such a wonderful day full of great memories I told them I don't know if there's anything else they can do.

After this cancer experience is over a part of me wants to run and never look back. To erase cancer from our vocabulary and never speak of it again. Then another part of me strongly wants to do something for someone else but I'm not sure what. I don't think I necessarily want to start something of my own, there's so many great organizations out there that I wouldn't mind volunteering for, so I don't know if I need to start anything on my own or not. Like I said a part of me want to run but at times when I talk to another mother who just had a child diagnosed my heart goes out to them and I get flash backs of first hearing the news and in my heart I feel their pain and literally I've learned to care and love people like I never have before this. These families need support so I don't know if God will let me just walk away when it's all over.

Being in this situation is different, being forced to think about the mortality of your own child is hard and these kind of events are so important. It takes you out of your reality and for a moment you just forget everything and have fun. There were games, Nathan and Peyton sat in a helicopter and the cock pit of a plane. They won prizes. There were so many fun things and when you have a child who's usually restricted as to where he can go, days like today are so valuable. If it wasn't for organizations like this our days would be spent going to hospitals with very little outside fun. But because of this organization we're able to escape our reality.

Maria and her Dad provided so much hope for us. Her Dad was able to offer encouragement to Sam, father to father. We've been to several events like this since Nathan's been diagnosed and been put in these positions where we are so thankful to the people who held the event and we are so thankful to them.

So today I just say thank you Lord for a wonderful day. I thank him for being able to meet this family. The people I've met along this journey have changed my life. Seriously if I could I would one day love to blog about all of the people I met and share their stories but due to privacy issues I won't do that but I wish I could. They've changed me, all have inspired to me and our lives are so much better because I've met them.

Please check back over the next week, I took a ton of pictures but haven't been able to upload them yet but I want to share them.

God Bless

Just some random thoughts.

My comfort in my suffering is this;

your promise preserves my life.

Psalm 119:50

Last weekend was pretty horrible, I was a bag of water works, crying most of the day Saturday into Sunday. I'd be doing dishes and tears would well up and begin to fall and the least little thing would trigger it.

I prayed and I took my cries to God saying "remember how you heard Hannah when she prayed to you? Well please hear me!" God always shows up when I pray, it's not always immediate but He still gives me comfort in little ways and I really yearned for His comfort this past weekend.

After praying that prayer I went and got my Bible to read I Samuel I believe in seeking God in prayer but to hear His voice I turn to His word. I came across the familiar passage of Hannah saying if God would just give her a son then she'd give him to the Lord all the days of his life. And I had to pause there. For some reason it just struck me of how Hannah prayed and then her reaction to God's gift.

I've had to keep giving Nathan over to the Lord. I did it again this weekend and I know when another tearful day comes up then I'll do it again and honestly when I remind myself that he belongs to God first and that God is still in control of this situation then I feel better.

I also read how Hannah rejoiced after giving Samuel to the Lord. She was happy! She praised God knowing she wasn't going to raise the son he gave her not even knowing if she'd have more children. The gift she yearned for she gave back and look how God used Samuel!

Already God has used this experience with Nathan to show me a lot of things.

I knew that Nathan was fantastic before but my respect for him as a parent has soared. God has showed me how to handle a difficult situation with grace just by watching him.

And any of you who truly knows Nathan knows he has what I like to call a quiet strength. He's an observer, if he sees something once he'll figure it out, he's always been the kind of kid who doesn't need things repeated over and over, if he sees it once I can guarantee as a parent he's got it. He learned his routine at the hospital really quick and he adjusted to this new life quicker than I did.

I pray constantly that Nathan and Peyton will love each other and remain close as brother and sister and just recently I noticed what an amazing big brother he is (it also helps that he has an awesome little sister ;-). But he helps her when she falls, I'll be in the kitchen and just hear "you alright Peyton?" Although they fight occasionally, he's really good at making sure she's taken care of, he makes sure she gets a piece of what he has and if he has a toy in his hand then he makes sure she has a toy in hers.

I've been a stay at home mother for almost 4 years now and most of those were spent on the go, from one play group to another and for the first time since Nathan was born we spent the entire year just at home. We've come up with a ton of things to do around the house and at times I felt would be nice if I could take him somewhere, but that's just me, if Nathan has Peyton here and some toys and books than he's good, that alone makes him happy.

I can't tell you how many people I've met who are going through or have been through the same or very similar circumstances with a chronically ill child who've touched me. I had a talk with one of Nathan's nurse who's been in Oncology for a very long time and she told me it never ceases to amaze her that the majority of the families that she's come in contact with who've been afflicted with child hood families have been the nicest people ever. People who you look at and go "why them?" And I have to agree with her. These people have become my family and my friends. Although we all wish we would've met under different circumstances I will proudly say my life is better because they're a part of it now and I'm so blessed to know them.

I've created a ton of memories over this past year. A ton of little things I store away in my heart watching both Nathan and Peyton. I try not to worry about the future. God told me tomorrow will worry about itself. At times I still get scared and lonely because this experience is truly like we're on an island but then I remember that I'm not alone that God comforts me and I can go to Him for that comfort and He rises to the occasion.

My Blessing

Through all of this you've been my blessing

There's a song called "If I could"

that talks about what a mother would do for her child "if only she could"

and that song speaks volumes when it comes to you and your sister.

I would take this from you if I could but God didn't leave that up to me.

I never knew I could love this much

and I never knew I could learn so much from a three year old.

Through this journey you've taught me what it really means to be strong.

In your three years you've put up with more than I've dealt with in my thirty-one.

I've learned how to take things as they come and roll with the punches from you.

I've learned how to laugh through pain,

I've learned how to keep going even when I don't feel like it.

And I've learned this all from watching you.

I've learned what it means to get back up after being knocked down.

So many people have tried to teach these lessons yet I've learned it best by watching you.

I admire you so much.

And I'm so proud of the little boy that you are.

You are the sweetest, brightest boy I know.

God gave me a son that is so perfect for me.

It saddens me to know that I don't think I would've been as strong as you if placed in the same situation.

I don't think I would have handled such an illness with the grace that you've shown.

Watching you have blessed me.

You refuse to be down and even now you've beaten all odds.

Your father and I just heard another man talk who had radiation aimed at his head and throat as you did and he described it as feeling like "fire."

He said he could not eat or drink anything no matter what it was.

The doctors showed me your X-Rays and your throat was full of blood,

yet you were still standing and though it pained you to do so you chose to eat even when it hurt.

You went from having a huge lump, to having an eye that literally would not move and a face that was half paralyzed.

You went through radiation that burned the entire left side of your face

and though I noticed when people gawked at the sight,

it didn't seem to phase you

Your throat was so swollen the doctors didn't think you'd be able to finish your radiation...yet you did it.

You were able to walk when the doctors said your pain was so great you needed morphine. You've been though more than any child should have to go through and yet you're still standing...still standing.

You amaze me, you really do.

I'm so very very thankful to have you for a son.

You're my blessing.

Random Thoughts

I still occasionally read other cancer moms stories. I know I probably shouldn't cause they don't always help, but at times I still do. Maybe I just want to hear someone who shares something in common with me.

I've been seeking God so much over this past year and lately I can't get through my day without turning to God's word and it's bringing me so much comfort as it usually does. I see life so differently now. I literally live life day to day. That doesn't mean I don't have goals but it's still so hard to know what the future holds and I don't try to figure it out. All I know is that today I woke up and both of our children were in their rooms and my husband was beside me and that's all I truly cared about.

As Nathan's treatments progress it takes longer for his white blood counts to recover after chemo (his white counts fight infections) so we have to be extra careful now more than ever that he doesn't get sick. I've become very strict in who comes over...I actually don't allow anyone over other than grandparents to be honest with you and they have to be well.

Cancer isn't a heavy topic anymore amongst our household when no one's around. We keep an eye out to make sure Nathan's not sick or anything but we're all about having fun and truthfully I believe we may have more fun than most families on a more regular basis.

I don't have time to be stuffy anymore and neither does Sam. We run, play, and act silly with the children as often as possible and make sure it's not a sad atmosphere. It's really no reason for it to be. There's nothing we can do but keep praying and we've been doing that.

The times when I get sad and of course it still happens I do turn to my growing group of cancer mom friends and it brings a weird sense of comfort. Unfortunately I'm not alone and when no one else understands why LaToya is acting "weird" they get it.

Life will never be the same. And in a way I pray it's going to be better. I've grown as a wife and mother in so many ways. I've always had goals that centered around my family but now they're so much more profound and can't be shaken by others opinions.

I've learned through this what God has been trying to teach us all and that is, life is short but eternity with Him is our ultimate goal. We have so much to look forward to when we realize God's ultimate plan for us as Christians. We're put here on earth for however long he gives us to do the task he instructed us to do. All of our paths and stories are going to be different. In these few short months I've learned more than I ever wanted to and have been through things I wouldn't wish on my worst enemy and I just pray God gets the glory for the everything I've shared with you in this blog.

I sometimes try to think of what our family would be doing this summer if cancer hadn't struck but I have no clue. It's totally taken over our lives so I don't know. I look at Nathan and try to think of how he'd be if he wasn't sick. I even try to remember how he was before cancer hit, but my memory fails me at times. Then I try to think of what we're going to do when his treatments are done and he's in remission and I can't think that far ahead either. What's it going to be like when I'm not going to the hospital several days every week? What's it going to be like when I can actually take him out in public places again without worrying about him getting sick? What's it going to be like when we can go to church again as a family? So many things I did every day all summer that I took for granted and crave to be able to do again. And will I get to attend his wedding one day? And meet his children? I don't know, that's up to God. But someday, no matter what happens, joy will return and this trial will pass and we all look forward to that day.

Being a mother has brought me an incredible amount of joy. I love spending each and every moment with Nathan and remember it just being him and me when he was born and then we welcomed Peyton and that just added to that joy. Despite what we've gone through as a family this year I still don't see Nathan as a burden. I'd bend over backwards for either of our children or my own husband for that matter. It's hard going back and forth to the hospital so much but Nathan is the one who is going through the treatment so my driving him and sitting there doesn't compare to what he goes through and I never forget that. I just want to see him better and watch him and Peyton growing up together and if that means I have to be at the hospital everyday to do that will then so be it.

I know a lot of people when their children are healed of cancer decide to never talk about it again and take their blog down. Some make it into their ministry and carry their stories out into the world. I truthfully don't know if there's any right or wrong thing to do. I write this blog now because it is therapeutic for me. I had another blog but shut it down because the content didn't matter to me much anymore.

I asked Sam what he wants to do when this is all done and he said "leave it behind and move on with life" and I actually agree. I'll leave this blog out here for others to read but the day Nathan's declared to be cancer free is when I'm going to 'retire' from this whole blogging thing. We'll tell Nathan all about his cancer and apraxia and let him use his story however he sees fit, but I agree with Sam when that day comes, I'm done. I don't think I want to talk about it or think about it or answer anymore questions about it. I have enough private journals around here that Nathan and Peyton will have more information about exactly what happened but unless God directs me to do otherwise (and truthfully I'm praying he doesn't) after this cancer is done so am I.

Fun Stuff

Ok I know I'm blogging a ton today and forgive me because I'm going so quick I know I didn't do much spell checking in these posts today. I'm just playing catch up because it'll probably be another week or so before I can do it again. I just wanted to share the fun things Nathan's been able to do.

Two weeks ago he went on his first boat ride. There's an organization here called The Littles Heroes that organize all sorts of fun things for children with cancer and their families and they have something called "Yachts of Fun." A man who owns his own Yacht took it upon himself to offer boat rides to children with cancer and their families. It's so nice, he even treats them to dinner! So Nathan was able to go!

We didn't know how him or Peyton would react to being on a boat. We frequent the lake now a days, because it's so warm and the lake area is so spread out. He can run and have a good time without necessarily being close to people. One thing we noticed whenever we go, is that he loves the boats. He's always pointing them out and yelling "Boat, Mommy boat" (yes he says 'Mommy' ALL the time now and I LOVE it!!!!) So we knew he liked looking at boats but we weren't sure how he'd like being on one.

As soon as Nathan and Peyton saw the boat they took off running (which was pretty scary cause we were on a pier mind you). They were jumping up and down with their little life jackets on so very excited!!! They loved every minute of it!!!!! The owner, Captain Ray, even let Nathan drive which was a huge highlight of the day and dinner was wonderful. We all just had a great time.

Yesterday we went to a picnic sponsered by the Oncology department at the hospital. The weather was wonderful! There were so many activities, face painting, Corn hole, water ballons etc. Nathan and Peyton especially loved the Parachute. Remember those from elementary school? We'd play with them in the gym and run under etc. Well I was very happy to see one there because Nathan's class he used to go to before he got sick had one and it was always his favorite and he hasn't played with one since. All of the adults kept flipping it up in the air and Nathan was running and playing with all of the other kids, throwing balls on top and just had a wonderful time.

I saw a little of the 'old' Nathan come out yesterday. I was kicking myself because I forgot my video camera but I got so much joy seeing him and Peyton running and laughing carefree under that tent, such a wonderful memory.

Dear Lord,

Thank you so much for the fun things we were able to fit in these last two weeks. I thank you for the organizations that arranged them and the fact that Nathan was out of the hospital and able to go. I pray for many more days like this.

Thank you for these times when Nathan is able to be around others who understand what he is going through, sometimes that 'common ground' is so nice.

Thank you for the laughter and smiles it brought him and us. I'm just thankful most of all for that parachute being there, knowing how much he loves that thing!!!!

In Jesus Name

Amen

Peyton

I know I haven't talked much about Peyton in this blog, only because it's totally dedicated to Nathan's cancer but I want to talk about her today.

Peyton is doing wonderful! Honestly I've heard horror stories about siblings and how they handle their sibling being sick. I was actually intrigued by this Ashton Kutcher video and his reaction to his twin brother being sick:

I've heard stories worse than this when it comes to siblings reactions, some kids are just really sad and can't figure out how their brother or sister can get sick, some feel guilty that it isn't them, some feel helpless and blame themselves for the illness, some get jealous because of all the attention their sibling gets, some actually blame their brother or sister and feel it's their own fault their sick and begin to hate them...the scenarios can go on and on.

So when Nathan was first diagnosed with cancer so many things swirled through my mind and at the very top was Peyton and her well being. We didn't know what we were facing but we were point blank told by our son's pediatrician that, "the journey was going to be hard and the road was going to be long."

It gave me a headache in the beginning (still does honestly) trying to figure out this new schedule of hospital stays and doctors appointments, most of which are unpredictable and since it was the winter, siblings were only allowed on the floor once a week for 3 hours a day because the risk for infection was too high. Even when Peyton came to visit she was given her own exam at the door, if she had any sniffle or fever then she wouldn't have been allowed on the floor.

I didn't know what I was going to do, most of you know that I made the decision to come home right when Nathan was born. Now though I was faced with a dilemma. Sam still had to work and though he works from home several days out of the week, those of you who've worked from home know that you can't get anything done unless someone is watching the children. Also I had to be at the hospital a lot and Peyton couldn't come. I called my mother and in conversation told her I was at my wits end because I didn't know what to do. I really didn't want to put Peyton in daycare on a whim, nor did I want to hire some unknown babysitter and even though Nathan was really sick I always had the perspective that I'm a mother of two not one and Peyton's well being was always just as important for me. She'd been home since birth changing that out of the blue wasn't something I wanted to do especially since she'd be doing it without her sibling joining her. So my parents called and volunteered to keep her WHENEVER we needed them too. I should note that my parents live over an hour away so this was a big deal, keeping her means she would have to stay the whole week sometimes or longer.

This was such a huge weight off of our shoulders. I was able to tend to Nathan knowing Peyton was being taken care of and surrounded by unconditional love and because my parents are always 'on the go' I knew she would be exposed to so many things which was also good so I was able to relax in this area.

Peyton seems to be adjusting quite well. We're pretty open about Nathan's illness around here. We don't harp on it but we try to explain it to them the best we can. For awhile it was pretty common for Peyton to play doctor on her dolls. She knows what medicine is now and she understands that Nathan gets shots. As a matter of fact she's the 'look out.' When Sam and I are preparing Nathan's needle she runs to alert him that a shot is coming, I'm not sure if he put her up to that or not.

The fact that Peyton is only two has a lot to do with her being so unaware, she understands a lot but her nor Nathan for that matter can fully comprehend the seriousness of the situation. I'm pretty grateful for that. I've heard stories of when older kids are diagnosed who understand what cancer is and what the outcome can be and have some heavy questions that their parents can't answer and me nor Sam have been put in that situation because of Nathan and Peyton's age and that's been a blessing.

Peyton brings me unspeakable joy. I love listening to her talk. I love watching her play with her brother. She pats him on the back when he cries and shares her toys with him. She's also into saying "I'm sorry" when she needs too, the other day she bumped him by accident and I heard "Sorry Nathan, Sorry" and it was the cutest thing because her voice is so small. I do get sad at times when I watch them play as I pray for God to heal Nathan, I wanted them to be best friends and I truly feel their pretty close. Yes they do fight like all siblings do but I can honestly say they play together really well and seem to enjoy each others company. When Peyton's away at my parents Nathan usually goes looking for her when he wakes up in the morning until I tell him she's at Grandma's and when Nathan is at an appointment it's common for Peyton to say "Mommy where's Nathan?"

I promise to share more on Peyton in the future from time to time because people do always ask about 'Miss Peyton' as she's so affectionately called now. But just wanted to let you know she's doing great!

Change

"I'm pretty strong but at times I still cry. I get alone in a room and I let it all out and after that I feel better until the time comes where I have to do it all over again..."

Nathan and I had the pleasure of sharing his hospital room with an amazing 11 year old boy named Isaiah. Now for those of you who don't know, the Oncology and Hematology departments are joined at the children's hospital. So a lot of kids there either have cancer or a chronic blood disease. Without getting into too much detail, Isaiah has a blood disease where he doesn't stop bleeding. It's hard to explain but it's very painful, not only does he have times where his blood counts are extremely low which always leaves him at a huge risk for infection but another danger is if he gets a cut he doesn't stop bleeding, and his blood flows differently which can be pretty painful. Now we as parents know our children are going to fall at some point but imagine knowing that if they get the slightest cut, it can mean an extended hospital stay. Truthfully the same goes for Nathan if his blood counts are low, which they often are and it's a very scary filling. Now let me throw a monkey wrench in this story. Isaiah is 11 and has a 21 year old brother with the exact same thing...his parents have been basically living in the hospital for 21 years.

Isaiah was so sweet, he immediately smiled and waved when he entered the room. And he was very caring, Nathan is given a steroid with his chemo. For those of you who don't know, steroids are something else to witness. I know we've all read about people on them but reading and seeing are two different things. Picture your child having a temper tantrum literally all day long. The least little thing is upsetting. For those of you who pride yourselves on being 'strict disciplinarians' well you can throw that crap out the window when your toddler is on a steroid, it doesn't work because they can't control what they're feeling, yelling, whooping, time outs forget it. Anyway that's what was going on on our side of the room and my heart went out to Nathan and Isaiah because I knew they weren't getting any rest. Finally a room opened up and Nathan was able to be moved to his own room and when I went to say goodbye to Isaiah and his mom they literally begged us to stay (no kidding). Isaiah told me "I don't mind, I really don't, I actually would like to come play with him when I'm feeling better." His mother was praying for Nathan and they showed so much compassion.

It was funny because Isaiah's mom was blown away by how calm I was with Nathan as he was screaming and crying from the steroid, she said "I admire the fact that throughout all of that you kept a calm even voice." LOL truthfully it probably sounded better than it looked (she was on the other side of the curtain) and I wish I could pat myself on the back, though I think a lot of the calmness was due to the fact I was in the hospital and not at home where I could 'let loose' and yell or cry lol. I told her how much I admired Isaiah for how he seemed to be handling his illness. It changes all of us and in some ways I don't want to be who I was before this whole ordeal began.

Isaiah's mom told me that no matter how strong she gets, she still breaks down and cry and after she gets it out she feels better. And truthfully the same goes for me. I feel stronger to be honest with you. This cancer has made me stronger as a mom and as a wife. It tore me apart so much to hear this diagnosis that I don't think much else can phase me (though I don't want that statement challenged either). I had a ton of self doubt as a parent and truthfully it used to really hurt my feelings when I'd get questioned on my son's speech and him being 'different.' Nathan's Oncologist said that cancer will change our family, whether our child is a survivor or not it will change us. I'm sure that change isn't complete yet. But I'm slowly starting to become the parent that I always prayed to be. My son isn't perfect but he's absolutely perfect for me and honestly I wouldn't trade him for anything in the world. I know based off of God's word that there's a purpose in all of this madness. Psalm 139 makes that clear. No matter what happens this isn't without purpose. My prayer is that Nathan is healed and will one day stand in front of people and tell them what God did for him. I want to thank people who've always seen the potential in him, who were able to look past his handicap and see Nathan. I want to be like them because they've meant so much in our lives. And truly I look at it different now, if all people see when they look at Nathan is that he's not verbal, well that's their handicapp and their problem.

I had a long talk with Isaiah's mom too. The one thing I'll miss when this is over is the people I've met. Lately when I'm outside of the hospital I feel like a fish out of water. This is something that's shared across the board with other parents of these children. For some reason when we arrive on the hospital floor it's such a mixed feeling of emotions. On one hand there's sadness that we have to keep coming back on the other hand there's a certain indescribable comfort in being around other people who truly 'get' what the other is going through and feeling. One mom asked me, "does this all still feel like a bad dream to you or is it just me?" No, it's all of us. It's a very different environment. There's washers and dryers and everyone pretty much knows everyone else. The nurses, doctors, admins, LPN's, janitors, child life specialist - all become family. Nathan runs and hugs them and they usually kiss the top of his head.

And I'll share this too, I'd already mentioned before that Nathan was diagnosed with Apraxia of speech in April. But even before the cancer diagnosis he's always had speech issues and as parents we used to have the hardest struggles dealing with outside people. Except for a few close family members, most people didn't know how to react to that..."He's not talking yet???!!!!! Is he Autistic???? Does he have behavioral problems???" It was so hard as a parent especially when faced with parents who's children did everything 'early' or 'on time' and they could not grasp the concept that children are different. And I can't begin to tell you the criticism that we faced because of it. Though we were actively getting Nathan tested and help, we were always questioned on "why we weren't doing anything?" (very insulting) We were told what he needed, etc. etc and though all of the advice wasn't bad it was still a struggle. There were only three types of people who were understanding; those who had a child with delayed speech, those who truly understood that God made all of us different and those who were around Nathan for extended periods of time and realized despite his language delays he excelled in every other area.

I get a little emotional at times because when Nathan went into the hospital on January 14th except for close family members it was the first time he was around people who treated him 'normal' from the get go. It's as if they didn't even notice he had a speech delay or didn't care. I remember his first experience with the child life specialist and she was showing him how to use syringes on a toy doll they have and she talked to him just like she would talk to any other child. She didn't slow her speech, or talk extremely loud, or repeat herself over and over, she picked up really quickly that Nathan may have a speech issue but nothing else was wrong with him (except cancer of course). But I always remember her joking saying it only takes one time for Nathan to get something.

Nathan's speech therapist is the exact same way. She's been so patient and caring and he's making huge strides, this last time he was at the hospital for chemo the nurses were blown away at the things he's starting to say. That's another thing that's kind of fun is sharing these precious moments with others. Not many people can be around as he makes his progress so it's kind of exciting to go through this speech process with them. A stranger sees he isn't talking and that's all they can see but they see how far he's come and they're all his cheerleaders :-)

Lately I've been reading Psalm 139. I can't get enough of it. King David is just reveling in the fact that God knows him and it really makes me think of Nathan. Verse 16 is especially precious to me: "...All the days ordained for me were written in your book before one of them came to be." It just reminds me that the Lord formed Nathan for a purpose. All of his speech issues and this cancer, it wasn't hidden from him. Verse 15 says: "My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body."

Dear Lord,

Despite these circumstances I still have so much to be thankful for. I can't thank you enough for the people we've met. I'm so thankful for the people you brought into our lives. I thank you for our 'extended family' who spend so much time with Nathan and see so much in him. I thank you for carrying him this far. So far we've been getting good news about his treatments working and Lord I'm so very thankful for that. Thank you for this hospital being so close. Thank you that he spends a lot of time at home especially since we know families who spend a months at a time in the hospital.

Lord thank you for my family and friends who've rallied around us. Lord I thank you for the lessons learned, I hate we had to learn them this way and I secretly wonder if this is the only way in which we could've learned them.

Lord I pray that you continue to give us strength and wisdom and when I say 'us' I mean all of the parents going through sickness with their children. It's rough and strength is really needed. I'm so thankful I serve a God like you. I know you understand our suffering and I know you're near and that you know us so well. You know Nathan better than we do and I'm so thankful for that. When he's upset you understand his pain, when he's happy you share in his joy, when he has fear you calm him down. Lord thank you so much.

In Jesus Name
Amen

Independence Day

Ok so we had the best fourth of July ever!!!!!!! We couldn't go anywhere to watch the fireworks because Nathan can't be around huge crowds so we stayed home, but our neighbor came over to ask if we would mind if her and some of her friends set off some fireworks in front of our houses. I was so excited and told her I would actually love that since Nathan and Peyton won't see a display otherwise. (I know it's illegal, but I didn't buy them!) Their display was amazing!!!!!!!! In my 31 years I don't think I've ever seen a better display of fireworks. They'd bought almost $2000 worth (no kidding) and set them off right in front. We have a storm door so Nathan and Peyt were able to watch without even going outside! They were cheering and jumping up and down both were happy which made Sam and me happy, Peyton kept yelling "did you see that?." All our other neighbors were outside watching it was great! And to make this day even greater I awoke to Nathan calling me Mommy!!!!!!!!!!!!!!!!!! For those of you who don't know, it's a huge deal because with apraxia he had to work his way up to it and it was the first thing I heard when I woke up Sunday morning. What a wonderful way to start the week!


Dear Lord,

Thank you so much for a wonderful fourth of July. Despite the fact we weren't able to go to any picnics it was honestly the BEST I ever had just spending time with Sam, our children and in laws. Lord thank you so much for Nathan calling me Mommy yesterday. I couldn't have got a better greeting from anyone else! Now I get to hear BOTH of my children saying it and it's such a blessing, I've waited over three years to hear Nathan say it and it was well worth the wait!

In Jesus Name
Amen

I'm really trying to sleep

It's just one of those nights when sleep won't come. I was just sitting and praying and I got up to try to go to sleep but I don't feel very restful right now. We've gotten such good news about Nathan lately and I'm so thankful, but at the same time I still have a lot of fear. As long as the cancer is inside I still feel uneasy. Things are going so well, yet there's always reminders that it's there.

Nathan woke up yesterday with a ton of drainage from his ear on the the side where the cancer is. Also I think you'll remember that, though his tumor isn't in his eye, it still impacted it. Still to this day he doesn't produce tears out of his left eye and we don't know if he ever will again. I pray he will, for the longest he couldn't even move it because the tumor rested on the optic nerve, but now he can move it. I just pray he can produce tears in it again someday. He still has swelling on the side of his face and eye where the tumor is and the hair he has left just kind of sticks up everywhere fussy-like (it looks kind of cute actually). Still no surgeon will touch this mass because of all it's connected too so we're praying that the chemo and radiation works to kill it and so far he's responding to his treatments beautifully.

You're probably wondering where all of this came from especially with so much good news in the past few weeks. I guess lately I've been looking into schooling options for Nathan and Peyt and Sam and I are always looking for our next move and we just bought another vehicle and all of these things are good right? I think they are, but at the same toke as we're doing all of this I can't help but beg God to allow Nathan to be a part of our future. I know life isn't guaranteed to anyone, anymore than it is to Nathan. But the thought of possibly walking by an empty room or looking at an empty chair in the car overwhelms me at times. And when people see Nathan they're quick too tell me how "good" he looks and I know he looks good to them because when you think of cancer he may not meet your expectations, especially since he hasn't been completely bald yet. He'll always be beautiful to me, however, right now he looks sick to me. As beautiful as he is, I want his metaport out, I want his hair to all grow back. I don't want to keep pumping him full of medicines. I want to see tears pouring out of both of his eyes when he cries. And he loves to cuddle all of the time now and as a mom I appreciate that but I would appreciate it so much more if he wasn't doing it because he was overly tired or sick from chemo or scared.

Dear Lord

I really hate days like today. I'm so sorry for being so negative and Lord I really am grateful. Forgive me for my rants because I'm so very thankful for all that you've done thus far. I just wish I could move on Lord. I just wish cancer wasn't always on my mind. I try to push it out but it's never far from my thoughts. I can't escape the fact that Nathan has it. Lord what he's been through is heartbreaking and I hurt whenever he hurts, I just wish the pain he's going through would stop. I just want him to wake up and be ok. I really want him to be cancer free. Just recently I heard stories of two people who were on their deathbed, one lady literally planned her own funeral because the doctors told her there was nothing more they could do, another guy was given a 0% survival rate as he battled cancer for the second time, yet you healed them! I know you're a healing God, I know you can do this. Please Lord do this for Nathan, please Lord do this for my son. Let him be a success story. Tell me what you want me to do Lord and I'll do it. I'll proclaim your name, I'll tell anyone about you. I'll raise my children to love you. If you send me somewhere I'll go. My life is yours I lay it all down, just please spare my child. Thank you so much for the good news thus far. I just want to continue to hear good news. Just tell me where you want me to go and I'll go for you, just please heal him, that's all I ask, you can take what you want from me just spare him.

In Jesus Name
Amen

Running From Chemo

It's sad but now I look at this poor mom and I so empathize with her. I'd heard this when it first happened, back when life was normal for us and truthfully I can't remember what I thought or if I put any thought into it at the time. Now when Sam and I watch this we can relate on so many different levels. The part where she discusses how she was being pushed into so much so fast really hit home with Sam and me because things moved so fast with Nathan as well. His first week in the hospital was full of quick decisions that had to be made and it was so hard because we'd never dealt with cancer and a ton was thrown our way in a short amount of time. My heart and prayers go out to this family. I know they're looked down upon by most but privately Sam and I have also had conversations on if we'd ever have to say "enough, no more for Nathan." Right now we're moving forward with the chemo but I do agree that the side effects are heavy. I'm so happy this little boy is cancer free now!!!! Pray for his father, it's a catch 22 if you ask me, if he doesn't get chemo the odds are possibly against him, yet even if he goes ahead with the chemo the doctors can't guarantee much of anything. Cancer sucks.

Hope

I heard a very good sermon tonight on Moody radio by James MacDonald from Walk in the Word, it was called "Why Trials" and it was just what I needed to hear tonight. In the sermon Pastor MacDonald asked a few questions and one stood out to me and it was "Do you still believe that God is good no matter what?" Truthfully I've never heard anyone ask that. Most people just spout the whole "God is good" and then the congregation answers "all the time." Pastor MacDonald has dealt with Prostate cancer himself as well as a prodigal daughter so he knows what suffering is, so I perked up at his sermon tonight.

I think I mentioned in earlier post how hard it is to find comfort at times. Not knowing the outcome of this is hard, even receiving the results from the first set of scans was hard. I believe in miracles and I know that God could make this cancer go away in an instant but for now He's chosen not to perform an instant miracle and sometimes as a christian that's hard to take. At least for me it is. I got saved at 23 and for the first time my faith is really being tested.

I've been transitioning so much lately, I said before that the pain of having such a sick child doesn't go away but Sam and I have learned how to cope. The night of the results we stayed up late talking and I had to ask Sam what if Nathan doesn't make it, unfortunately it's a topic that's come up a few times since January. I've had people tell me to keep believing he's going to be healed. Truthfully that doesn't make me feel any better because it's not up to me or the doctors anyway. I don't want to put a lot of hope into a situation. Let me clarify, I'm not giving up, and I want Nathan healed more than anyone, but it's a situation that can go either way.

So back to Pastor MacDonald's question, do I believe God is good even in this trial? Actually when I think and ponder it, I do. I really do. And the reason I won't put a lot of hope on the situation is because it's not guaranteed, so I choose to put my hope in Christ alone. I know that He's good. I know that He's in control. When I look at the situation sometimes it truly seems hopeless. When I look at how much Nathan has changed sometimes it feels hopeless. But when I look at who God is and what He's done in the past I have hope again. And that hope is that no matter what happens in the end, God is good and everything is going to work out for His good.

Pastor MacDonald gave several verses but one stuck out to me

I am still confident of this:
I will see the goodness of the Lord
In the land of the living.
Wait for the Lord;
be strong and take heart
and wait for the Lord.
Psalm 27:13-14

You see I love the Lord. I can't express that enough to whoever reads this. I have a hope that is hard to describe at times. I hurt a lot and at times I get really angry at God, especially for allowing this to happen but I can never deny the fact that I trust Him or deny that I take comfort knowing He's commanding this ship. I don't know how God is going to use this situation in our lives or other peoples lives, but I do know that He's forever good and forever in control and that our hope will remain in him.

Dear Lord,

Thank you so much, I just want to thank you so very much. I don't know much but I know you're real. I'm so thankful to be your child. I'm just thankful to know you, to be able to call you Lord. And I don't know what you're doing in this situation, but I know your glory will be shown no matter what.

Lord give Nathan strength. Lord keep him from being afraid. Lord I want you to heal him, I want him to grow old and testify on how you brought him out, but more importantly I'm now praying for your will to be done and for Sam and I to trust you even if it's against what we want.

Lord I pray that someone comes to know you in this situation. If you're using this to ultimately lead people to you, then so be it. I pray that despite everything going on that someone who doesn't know you come to know you.

Storms are going to come whether they're saved or not, but Oh Lord I can testify what it's like to know you in the midst of the storm. Lord I can say how I wouldn't be able to cope if it wasn't for you in my life. Lord I can say you give hope where there isn't any hope. You provide joy where there isn't any joy. You carry us when we don't feel like walking. You're there to listen when everyone else is asleep.

Lord you're real. I pray that people come to know you as their Lord and Savior. I pray that your light shines through this difficult situation. If only one person comes to you through this then it'll be worth it.

Lord let your light shine and your will be done and give us wisdom allowing us to accept it. Even though we don't always agree with it, let us accept it and when we feel down or angry remind us that you're here and you care. We may not see it now but we will one day.

We have hope in you and one day we will see you face to face and if all of this isn't made clear to us while on earth it will be made clear to us then.

Thank you for the time we all have with each other. Lord so many people are looking at Nathan's situation and we're all praying and hoping that he lives but truthfully the next five minutes isn't promised to ANYONE. We're no more guaranteed tomorrow then a sick child like Nathan. Please Father if you use this situation in any way, let it be to draw people closer to you.

In Jesus Name
Amen

Time

Being in a hospital so much is weird. It's become like our second home. Nathan has a routine at the hospital, just like he has at home. We get there and put our clothes in our little closet (lately he's been getting his own room), he still has to nap, he has the same bedtime etc. And it's a very familiar place to him now. He knows where the playroom is and he usually likes to go there to retrieve his favorite toy and paint and play with the other children, he knows where the milk is and the microwave and where we go to get linens, it's become a second home to him. And the people have become our family.

He knows all of his RNs and LPNs, child life specialist, and the people who clean his room are his friends, the doctors are probably like Aunts and Uncles to him. He truly lights up when he sees them. And I have to admit that as much as I hate cancer I truly am thankful for the people who've crossed our paths.

Because of their low immune systems, the childhood cancer floor is behind closed doors and you have to be buzzed in and you have to wash your hands and if you're sick you cannot visit. I've gone through those doors quite a few times now and I've grown more confident over the last few weeks. I no longer just hang in Nathan's room, but I now go out and mingle a bit with other parents and I've met some truly amazing people.

Another little boy named Dylan is in remission for the third time. He's 10 years old and was first diagnosed at 15 months and his Dad always greets us with a smile and lets us know it gets better. Dylan took Nathan under his wing when he was there and showed Nathan how to operate the older, cooler toys in the playroom! Oh and he made sure we knew the make a wish foundation was building a pool for him last week :-)

Right next to Nathan was a little Amish girl who's been in the hospital for a long time. Her parents are wonderful people who love the Lord and remind us that God can heal if He so chooses and we encourage each other to hang in there.

I got to go on a spa day with three wonderful mothers, we spent the whole day together swapping stories. All of us completely different though united in the fight to save our children. One mother let me know she has comfort in the fact that if her child were to die she knows she'll be in heaven with our Savior. Such faith.

I've wondered over the last few months why some children get such serious chronic illnesses. I've wondered why some parents have to deal with watching their children so sick. And when I meet these parents and see the strength they have, the amazing courage, the ability to still laugh even in the midst of heartache and to be able to see such good, even in such hard times it truly speaks to me. I know I'm going through this too, but I stand in awe when I see my peers and I draw so much from them.

Having a sick child is a hard weight to carry around. Statistics mean very little because each individual is different. I'd been told that with Nathan's situation if his cancer comes back a second time after he's in remission then his chances of survival aren't good. But remember Dylan up above? Well he's survived Rhabdomyosarcoma twice...I've learned God doesn't go by the world's statistics.

I can honestly say I haven't spent a lot of time worrying lately. In the past worry hasn't gotten me very far. Even when Nathan was hospitalized with a fever a week ago I didn't spend much time worrying. I think worry has exhausted me for now and I have no room for frustration at this time either, I'm sure they'll peek their heads back in soon enough but for now they're locked out. My perspective on things is ever changing and I've just been enjoying Sam, Nathan and Peyton and the time we have together now. I see my children in a way I didn't before cancer. Things I thought were important aren't, I have much more time for them then I ever had before. We paint and get downright messy, we roll on the floor being silly, we cuddle in the morning eating breakfast in bed while watching PBS kids and I truly love it.

Believe it or not, some parts of life are simpler then they were (I should put strong emphasis on SOME). I don't panic over spilled milk or a broken toy or ripped shirt. I try to keep a spotless house but I'll sacrifice doing dishes to go for a walk with Nathan and Peyton. I'm not always so angry when I have to go tend to Nathan or Peyton at night, I would like to sleep but I'm very thankful to still have them in their rooms, able to cry and wake me up. Things I used to put first take a backseat, quality time has been maximized and perspectives have been changed.

Dear Lord,

Thank you so much for the people you've placed in our lives. Thank you for the amount of time we have together as a family. I get so much one on one time with Nathan in the hospital and in the past I've been so angry being there that I didn't realize what a great opportunity it is for quality time. Thank you for the amount of time I've been having with both Nathan and Peyton at home, just sitting on the floor putting together puzzles!

And Lord I lift up the other little children in prayer, Victoria, Riley, Julian, Dylan, Holly, Benjamin, Zach and there are others, who's names I can't recall. Lord you love them more then we ever could. You know every hurt they feel and you're right there when they're going through what they're going through. Lord be with these babies. Please heal them. Continue to strengthen their parents. Lord when it feels like they can't go on, please carry them. Give them all peace that passes all understanding. And I pray for salvation, Lord for those of them who don't know you.

Please continue to strengthen all of our families, keep our marriages strong, give us wisdom when it comes to decision making.

And Lord thank you so much for the times of laughter that we have. Thank you for the time we all have together with our families right now.

In Jesus Name
Amen

Listening to God

Sam and I prayed for guidance throughout Nathan's pregnancy on whether I should keep working or be home full time. In the end we felt strongly that God was leading us in the direction of having me home and so that's what we decided. We didn't consult many people on this decision. We were living off of two incomes and we were able to pay our bills just fine but whenever we did the math on just one income it wasn't adding up. I remember sending Sam a message from my desk showing how our bills would outweigh our income to the tune of over $400 if I were to quit and I remember Sam telling me to quit adding up numbers because it truly didn't make sense why God would want us to do this. We truly stepped out on faith for the first time.

The entire first year was ROUGH. We had to learn a totally different way of living. I've never been frugal because truthfully I never had to be but suddenly I had to learn and it was not easy for me to learn it. But without going into detail I can proudly say that we paid off more bills during that first year and a half then we ever did on two salaries it was still VERY hard to do and there were a quite a few bumps in the road, but we did it. By the time Peyton was born Sam had been blessed with increases at work and truthfully we were back to living pretty good. Oh and we learned how to live without credit cards (thank you so much Dave Ramsey!!!!!!!).

Why am I telling you this? Well I'm trying to set the scene I guess. It'd take all day to write a post on the nitty gritty details of that first year and a half. And truthfully we didn't know why God lead us in this direction and allowed us to have such hardships but neither Sam nor myself will ever deny the fact that it's what we felt God wanted us to do. I caught a lot of slack for being at home and it wasn't even because of what we were going through financially. Truthfully at the time we didn't tell anyone how hard that financial adjustment was. It wasn't until we were financially stable that we began sharing it a little. I caught a lot of slack because staying home in this day is really against the norm.

Now I can't argue whether a woman should work or not. In this day in age two incomes are almost needed to stay afloat. I understand that and with all the criticism I was getting I couldn't explain to people that this is truly what I felt called to do. And it was ironic that God lead us in this direction. I got my Bachelors in Computer Information Systems and for years after college I worked jobs I could care less about and then the week I got the job I always wanted, I found out I was pregnant with Nathan and then the internal struggle began. I loved my job, I loved my boss and the people I worked with. It was a great environment to work in. So why would God want me to leave it behind?

But being home has been the most fulfilling thing for me. Just this summer Sam and I were talking and looking back over the rough financial period we went through and I remember him saying, he'd do it all over again and I agreed with him. And again I couldn't explain to people that this is what God called me to do. I'm not talking about women even because when I would say that people would jump down my throat with the whole women's lib talk. I'm talking about me, LaToya - Sam and I prayed on it and being home is what I was meant to do.

Then Nathan gets cancer in January...You see God wasn't blindsided by Nathan's illness. Sam and I were but I truly believe God wasn't. Sam and I wondered why God would allow us to go through such a rough financial period and honestly before Nathan's cancer we were sailing. Life was great. Our bills were in order, we even have a savings! We figured out how to do this without struggling and then cancer. Sam and I don't understand much about why Nathan got cancer and a lot of things we'll never understand but we truly feel we understand this part of it.

"Aren't you glad you're home?" I've heard that a few times since Nathan's diagnosis and I don't think people can ever realize how glad I am that we listened to God's guidance back then. Had Nathan's cancer hit now, I would've had to quit my job immediately to take care of him. The only thing smooth about this whole diagnosis is that I was home already. We'd already set up this house around Sam's income and we'd had three years to make this set up work and it's been working well. Sam and I don't want to imagine how it would've been if we'd got a cancer diagnosis and on top of that tried now to live on one income, though we've talked about it and can't imagine how that would've worked.

This post isn't to say that every mother is to quit their job right now and go home. It also isn't suggesting that every mom is home because their child has the possibility of getting an illness in the future. It's just to say if you're ever in a situation where you know beyond a shadow of a doubt that God is leading you in a direction (and sometimes that direction is uncomfortable) then don't be afraid to do what God's calling you to do.

I still don't like the fact that Nathan has cancer but truly there are situations like these where I have to give thanks. We didn't have to figure out who was going to take Nathan to his appointments, I didn't have to worry about a job, or losing income suddenly and for that I can't tell you how thankful Sam and I are. Quite a few of the families on Nathan's floor have one parent at home, either the mom or dad and as one mom told me "you have to be." And she's so right but sadly the economy is such that still others have to work and I know they feel torn and you do see young children and babies left alone. I remember the first week Nathan was in the hospital seeing a young girl around 11 pm roaming the halls. She was no more than 7 but she was there alone and I remember a nurse telling her "honey you have to stay in your room." I also remember seeing a 1 year old sitting behind the nurses station alone. One week when Nathan stayed he had a young room mate and I remember the doctors telling him they couldn't do anything until his mother got there and I remember this young child calling her telling her she had to come back out to the hospital. And let me stress to you these aren't bad people necessarily. Of course sadly there are cases of neglect but you can't just assume that's the case every time you see a child left alone. You don't know if it's a single parent home, or if the parents have to work. A lot of these people LOVE their children and it hurts them deeply to have to leave them on the cancer floor (or anywhere in the hospital I'm sure) but they truly have to work or have other children at home with no where to put them etc. and they need a lot of prayer.

Dear Lord,

I've been doing a ton of complaining lately and for that I'm sorry. But Lord I am thankful. I can complain all I want about having to go to these appointments with Nathan and it is hard to go, but Lord I'm sorry for not realizing the blessing in me being able to go. Lord you positioned Sam and me to be able to be there, every time Nathan has to go to the hospital we can take him. And Lord I never have to worry about leaving him alone to be somewhere else. When Sam and I found out Nathan was sick I didn't have to call and explain to anyone or report to anyone, you put me in a position to be able to concentrate on our son and his care. Lord forgive me for not acknowledging this sooner.

Lord thank you that my mother is home and Peyton's able to be with her and my father. Lord I'm comforted knowing beyond a shadow of a doubt that they'll protect her in the same manner Sam and I would-with their very lives if need be. Thank you for Sam's manager being so supportive of Sam in this situation. Thank you for the flexibility he has at work.

You worked this out Lord and I thank you so much.

Lord I pray for the families that have to leave their children to handle other obligations for whatever reason. Some of these families don't want to do this and I know it has to hurt and who knows the criticism they may get from people who aren't in their shoes. Lord my heart goes out to them, it's hard enough having such a sick child but Lord I can't imagine the pain and guilt they must feel. Lord please comfort them and send them help. Lord they really need help. Before Nathan's cancer I didn't know about this world. I knew children with cancer were out there but I never knew what the families went through and I'm learning more and more every day.

Please continue to blanket Nathan with your comfort. Lord those first set of scans are coming up and I pray that this tumor goes away, in the mean time ease his pain and give him peace.

In Jesus Name

Publish Post

Amen

He Still Has a Chance

So Nathan couldn't get chemo this week. He was supposed to spend the night in the hospital but he had a mouth full of sores (which is a side affect from all of this medication). So his doctor didn't want him to have his chemo because one of the chemo drugs will make his existing mouth sores worse and more will come. So they want to give him several days so his mouth sores can heal. So he basically got a week off and because his blood counts were good the doctors gave the go ahead for him to participate in activities today so we decided to stop in at his old playgroup.

Now Nathan hasn't been to his playgroup in a long time. I'd talked to one of the grandmothers, who goes with her granddaughters, in February so the entire playgroup was already aware of Nathan's cancer. Nathan was so happy when we got in the parking lot and he walked in smiling, but when we got in the room he was a little hesitant to join the other children. In the past he would run straight to the group and start playing, but today he just kind of hung in the middle of the room staring, they'd rearranged the room so part of his apprehension could have been because everything looked different. One of the coordinators immediately grabbed his hand and took him over to the kitchen area to play and his hesitancy wore off really quick. It was so nice, he got to play with the water table (it had oatmeal in it the last time we were there) and he played in the kitchen area and just had a great time and didn't fuss when playtime was over.

One mom came up to me, Nathan and her son Mateo played together a lot when we used to come regularly, and she gave me a huge hug and asked how Sam and I were doing. She then gave me her home phone number and told me to call her and feel free to drop off Peyton if we ever needed a sitter and she stressed that she meant it and wasn't just talking. She then shared with me about a friend who's daughter is a cancer survivor and then she told me that she lost a child herself in between the two children she has (she had a three year old and an almost 1 year old). I wasn't expecting that. It's something how we see people so often and never know their backgrounds. Of course until now there never would've been a reason to bring it up.

She said her heart goes out to me and people in my situation who are dealing with a sick child because she understands the hurt. Her son was born without a brain. She said she knew when he was in the womb that he didn't develop one but her and her husband carried him anyway keeping hope alive that somehow the situation would be changed, but in the end he was born with out a brain and ultimately didn't survive. I asked her how she coped. I mean if you can meet this woman, she has so much joy and I've been around her a lot in the past at the playgroup and I can honestly say she's a wonderful mother, full of energy and I've truly never seen her down and I just had to ask how she got through it. And she told me she just had to take it one day at a time. She stressed how hard it was and how much she wrestled with how God could allow this to happen to a baby but eventually she found peace. Then she really ministered to me, I don't know if she knows how much but she started saying things that were in my head but I hadn't verbalized to anyone, but she said some things I'd been holding inside.

First she told me try not to worry too much about my other child. She said she knows a situation like this can cause a me to stress out over something happening to Peyton but don't do that, just trust God with her. It was like she was reading my mind. I pray for Peyton like I never prayed for her before and that's not necessarily a bad thing, but I know some of it comes out of fear at times. I always ask God to blanket her with protection but now I'm very specific. I ask him to shield her from disease, from being kidnapped, from a fire, from car accidents, from falling down the steps, from peanut butter (hey I don't know if she's allergic or not yet), bee stings...seriously the list goes on and on but I plead with God to keep her intact now more than I ever have because I'm secretly not sure I can take something happening to another one of my children and when she said that it struck a nerve and made me realize I need to relax in this area and trust Christ.

Second and this kind of ties into the first. She said don't be afraid to have more children when the time is right. And when I do, she said don't be afraid you're not going to love them as much as the children I already have and too don't fear that they're going to be sick or handicapped, just trust God. Now this was important to me, for those of you who know Sam and me really well know that we really wanted two more children but after Nathan's cancer diagnosis, I gave up hope on that happening for so many reasons, it saddens me but I have so many fears over that. What if Nathan goes into remission and then comes out of remission and I'm pregnant or have a newborn, then how am I going to balance going to the hospital and taking care of a baby? Also I've thought, what if we were to lose Nathan, then could I really welcome a new child after the loss of another one and of course I thought what if the new baby gets sick. I've been ashamed to admit that on here and truthfully I've only discussed that with three people before this and I couldn't explain why I felt this way but when this mom spoke to me today it was if she read my mind and it comforted me knowing I'm not the only one who've had these similar fears. So I've placed the more children decision in God's hands, the time is not right, now of course, but it's up to him if we're to have more or not.

And lastly she reminded me that Nathan still has a chance and not to forget that. She said her and her husband knew when she was carrying their child that he really didn't stand a chance and she said she agonized over that but she said Nathan does. As long as he's here and as long as he's getting his chemo and he's had radiation and he's going to doctors appointments, then God is giving him a chance and she told me to keep fighting and hold on to that chance that God is giving him.

Dear Lord,

Did you set up this meeting with this mom today? It's like you were speaking to me through her. I've been keeping so much of what she said bottled up inside because I really couldn't explain to anyone why I felt that way or was having these thoughts and she really touched on a lot without me even saying a word.

Lord I've observed her in the past and have always admired her interactions with her little ones in the playgroup. I can't relate to what she's been through, Nathan's still here and I haven't experienced the loss of a child. She experienced such a huge loss in a very sad way but still she came up and ministered and shared it with me today. And all the many times we've been around each other, who knew that you'd use her in this way. Not only that, she has such obvious joy. I know what she went through was hard, she emphasized that but she also emphasized joy and as long as I've known her the joy is what I've always seen.

Lord I can't help but serve and love you. Even in difficult times you have these ways of bringing comfort. I'm constantly reminded that you haven't left. You promised you'd never leave me or forsake me and you've been true to your word. When I feel like quitting you send a reminder that you're still here. When I feel like you're far away you let me know that you're close. When I feel as if I'm alone, you remind me that I'm not.

Lord you remembered Hannah when she prayed and blessed her with Samuel, you remembered Noah in the ark and sent a wind to recede the waters, you heard the groaning of the Israelites and remembered your covenant with Abraham, Isaac and Jacob, you remembered Rachel and opened her womb, Lord you love Nathan and even though at times I feel that things are spiraling out of control you have a way of reminding me that you're still on your post and haven't left, you remember him, I know it.

Lord I know joy will come again someday. I know peace will be restored, no matter what but at times I need reminding of who you are and that you never forget. Thank you so much for giving Nathan a chance.

In Jesus Name
Amen

Another Day

I had to call Nathan's Oncologist at 2 am Monday morning. Beginning on Saturday Nathan started acting really fussy and it reached a peak Monday morning. He woke up inconsolable , he had a mouth sore which is a common side effect from his chemo but in addition to that he just seemed uncomfortable so I decided to call. He didn't have a fever which was a good thing so I gave him something for pain and rocked him back to sleep after talking to his Oncologist.

All day Monday I was on the phone back and forth with the Oncology team giving "status updates" on Nathan's progress. My parents had come up to help me clean. My house is horribly behind...we spent all day cleaning just the kitchen. During the time we were cleaning I noticed Nathan had a rash on his face and showed it to my parents and my friend who was over, a rash could possibly symbolize the onset of an infection. Since he didn't have a fever the doctors said it was ok for him to wait and come in today. So at 9 am this morning I took him to in to see his doctor.

Thankfully when he woke up this morning the rash was better and his voice is starting to come back which is a good thing. He did however have a low grade fever when we checked into the doctors office but it wasn't enough that he had to be hospitalized. We had to keep an eye on him and keep checking it periodically, and now he's asleep and it hasn't gone up, and I'm praying it doesn't go up tonight or he will have to be hospitalized (he'll be staying overnight again this week).

Dear Lord,

Please take this cancer from Nathan and give us strength.

In Jesus name
Amen

I Just Want to Be Happy

Sometimes I truthfully wonder if life will ever be the same. Cancer is such an emotional roller coaster and I don't know if I'm really happy, I've just learned to cope. I hope happiness comes back soon. My Aunt who lost her son to cancer said that joy will come again one day. I think I may put in a call to her for more encouragement.

The problem is that the days are so unpredictable. One day Nathan's feeling great and then the next he's sick again. Nothing can be planned, really. I can say I'll meet someone somewhere and then wake up the next morning to a sick child and I just can't.

I have a wonderful little girl who'll be two next month and I have to remember to get her away daily for one on one time. Her vocabulary is exploding and it's really fun to talk to her and she brings me a ton of joy. In all of the sadness it's hard to find time to laugh and just have fun, but there's a ton of laughter when we're together. I truly feel that cancer has robbed Sam and me of just being able to enjoy our children, but we try hard to make all of our time together enjoyable.

A date night for Sam and me isn't in the near future. Nathan isn't verbal so we can't really leave him. It's too touch and go, we don't know the effect the radiation has had on his throat but he doesn't have a voice at all, he's forever congested and if you don't understand his gestures it can be a huge problem because if he's sick and need medical attention, you'll have to understand him to be able to help him. I know a time will come when he can be left for a little while in someone's care but now isn't the time.

Cancer just stinks. It's like a nightmare, we want to escape it so bad but it's always in our face. There's days when he's laughing and just so happy and it gives us so much hope and you go to sleep happy, then at 4:00 am he wakes up crying inconsolable and then is back sick again for several days. He doesn't seem to be at peace himself and though we're honest with him we don't discuss all the nitty gritty details with him. His hospital stay is coming up and he got really sick from the chemo the last time and since he's not well again, I'm guessing he'll get sick again.

I saw on the news that scientist are coming out with new ideas on how to cure cancer. Of course these ideas have to go through so much before they become approved and it's frustrating to watch because I want them implemented now. If they're that good, then I want them implemented as soon as possible so Nathan can benefit from them.

I've been staying up late again because my mind is just so full. It's weird because it's not that I can't sleep, if I chose to I could go to bed at 10 and sleep all night. But then all of my dreams lately center around hospital related stuff. They're not really morbid or anything but I'm still sick of them, so I just choose to stay up. I read Psalms every night before bed and Sam and I pray together and then I pull out my phone and watch happy movies until my eyes close on their own.

I'm just so sick of seeing Nathan so sick. I'm frustrated that I can't alleviate his pain. I do feel angry at times still(this is one of those times if you can't tell) and I take it to God. I just want Nathan's pain to stop. I want this year to end already. I want Nathan to be well and happy. We all feel robbed! I so wanted to be a mother and enjoy motherhood and I don't understand why God allowed this to happen and more important why did it have to happen to Nathan and not me.

Sam cut Nathan's hair for the last time in February, it was starting to come out so we decided to cut it instead of watching it fall out. And we saved it, I truthfully forgot to save his baby hair from his first haircut but we did save his hair in February and I came across the bag of hair today and I just pulled it out and held it in my hand. It's was so thick, I just can't believe the majority of it is gone and won't be back for a long time, it just made me sad I guess.

Nathan was also diagnosed with having Apraxia which is another big problem, though not as big as cancer. I debated whether I was going to talk about the Apraxia on this blog, truthfully I don't feel like discussing it in conversation right now, but it's not a fun diagnosis either, though after already having a cancer diagnosis we took this diagnosis pretty well.

It's a lot going on in this household and I truthfully don't look forward to a lot anymore. I just want to hear cancer free, that's all I'm waiting to hear is cancer free and pray that one day Nathan himself will be able to stand in front of you and give a powerful testimony as to what God can do. I pray that he'll speak eloquently when that day comes. I draw a lot of encouragement from Exodus 4:10-11, remember when God spoke to Moses and Moses said to Him:

"...O Lord, I have never been eloquent, neither in the past nor since you have spoken to your servant. I am slow of speech and tongue.

And God replied

¹¹ ..."Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD ?

Well I'm going to go start my night routine, it felt really good to write tonight. I know this post was kind of all over the place, I just kinda wrote my thoughts as they are in my head right now.

God Bless