Welcome to the North Pole!!!!!!

Nathan had a wonderful time!!!!!! Unfortunately he didn't make it into any of the news shots :-( he was off somewhere when I was on talking!

Quick Updates....

Nathan stayed in the hospital for chemo this past Monday. This is the roughest time I remember him having. He threw up a ton in the middle of the night, into Tuesday afternoon.

He's home now. He didn't throw up any on Wed. but just got really sick again today and has been throwing up and just begging to be cuddled.

He did get to make a wish through the "Make a Wish Foundation" and will be going to Disney World next spring if all is well. It was so cute, as soon as the volunteer arrived he announced "Mickey Mouse" to her before she could even sit down lol so Mickey Mouse it is.

He got his cast off his feet and no longer walks on his tip toes. We'd gotten so used to him walking on his toes that it still seems weird watching him walk flat. All the while he never once complained about the cast. Nothing really seems to phase him and I'm so thankful for that.

I'll continue to update as things come together. If all still goes according to schedule he'll be wrapping up his treatment the first week of January 2011...

About 5 of ya'll have called me and believe me I got the messages, I'm going to call back soon, these last few weeks have been pretty busy but as soon as I get a break I'll be calling!

God Bless

Praise Him

No seriously I have been thanking God out loud all morning. My daughter is getting a kick out of hearing me and seeing me raising my hands and praising our wonderful Saviour!

We got a call this morning that Nathan's tumor has again shrunk significantly since the test last month and that the intensity is measuring low. I won't have the exact numbers until we actually go in and sit and talk with the Oncologist this Thursday and I'm so excited to hear them and look at the comparisons on paper.

But for right now we praise Him! God has been so good and gracious and I'm so thankful to Him for this wonderful report!

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.

Risk Benefit

Lately we've been having visitors popping over and I love getting company but some come from pretty far away (like over an hour...). The problem is...Nathan still can't really be around people. Sam and I LOVE having people over and so does Nathan, we really do but right now is really not a good time for it.

I'll explain a few things that I may not have explained before in this blog, I can't remember but I'm going to address them really strongly here. I'm going to tell you point blank as Nathan's doctor told us: "If Nathan gets a cold it could kill him." This is no joke or exaggeration. Something as minute as a cold can literally kill him.

Nathan's nurse describes it as a risk/benefit. Meaning it's a benefit to see people and to let Nathan be around those who love him but every single time ANYONE outside of his immediate family (me, Sam, and Peyton) is around him it's also a huge risk to his health.

With flu season just around the corner I really want to address this now because when that time comes we won't be permitting anyone in except his grandparents when they are well. Sam and I will be spending the upcoming holidays here alone with the children. Please don't feel sorry for us because we don't feel sorry for ourselves. God willing we'll be with family again for these holidays next year and in the years to come but to us it's a small sacrifice to keep Nathan safe and in our opinion it's not worth the risk especially knowing that the situation is temporary. Even when Nathan stops getting chemo and is considered to be in remission it's still going to take a little while for his body to recover so please don't make plans of visiting anytime soon after that.

As Nathan's treatment progresses his blood counts will continue to get knocked down and take longer to recover and that is happening to him now. When his blood counts are low it lowers his ability to fight off infections. When you or I get a fever, what do we do? We take Tylenol or some other antibiotic right? If Nathan gets a fever he CANNOT be treated at home he needs to be taken to the emergency room and it's VERY hard for his body to fight it off.

For those of you who've seen him lately, you've complimented how great he looks and he really does. I'm so thankful and happy for how happy he's been and how he's been playing and running and jumping etc. I'm agreeing with you now that he is doing very well for a little guy with such a rare form of cancer and I want that to continue. Nathan's nurse stresses over and over not to let how he looks deceive us and I don't want it to deceive you either. We're on the right path, things are going great but any infection can mean a major setback for him and if he gets sick the illness comes on QUICK. The last time Nathan had to be hospitalized with an infection he was outside playing and acting fine all day then around 7:00 pm he asked to lay down and within a half hour he had a fever and after that we were on the phone with the doctor and en route to the ER and admittance. It can come on that fast.

Please please please start calling before you come over. There are times (though they are very rare now) that he can have company and we will welcome you (as long as you're well) during those times. I just have to put this out here because as awkward as it is for you to receive the news that you can't come in it's also very awkward for us to have to tell you, especially if you drove a distance but you will leave us no choice, we cannot take the risk anymore.

Please try to understand we are not trying to be mean and we're not blowing anything out of proportion. This is still a SERIOUS situation and we're nearing the end of Nathan's treatment. Prayerfully if everything continues to go well he'll be done with his treatment around the beginning of December! The end is near and we're praying hard to hear cancer free and we just really don't want any infections if we can avoid it because he's so close.

There are rare times when Sam or myself will receive company but when we do this the other takes Nathan away so he's not around the person visiting, they'll go outside or Nathan will stay upstairs. But again we need you to call ahead (NOT when you're en route either) and let us know you want to come over so we can tell you if it's a good time or not.

Soon this will all be over and we'll be able to have visitors over and we'll welcome you with open arms believe me. I know everyone reading this blog have been praying and I can't tell you how much we appreciate it and I do know that everyone visits with only the best intentions and you all love Nathan very very much and we appreciate everything you do and have done for us so please join with as again and help Nathan by calling before you come.

God Bless

LaToya

***IMPORTANT***

I know I haven't posted much in awhile and I will soon I promise but right now I've been in contact with my friend who's baby has Lukemia and he's just been moved to the ICU because of pneuomonia and respitory distress. He's only 6 months old (diagnosed at 2 months). Please keep their family lifted up in prayer. He has an identical twin brother as well (who isn't sick) but he's only 6 months so I know this is a lot of stress. He's a wonderful sweet little guy. Please, please, please pray!!!!!! I'm going to stop and see him tomorrow and will keep everyone posted but for now please stop what you're doing and send up a prayer for this little boy.

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.

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

And then there were three

I was saddened to find out that one of the ladies who went on the spa day with me in May lost her child. Please keep her family in your prayers.

God Bless

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

Quick Update

This is going to be extremely messy cause I'm typing quickly.

Nathan has to get a PET Scan on the 16th. We found out that although a portion of the tumor hasn't shrunk some of the cells have died. This PET Scan will determine how much of the tumor is dead.

Still no surgeon will touch it and the doctors said that the tumor will probably never shrink completely (we thought it would). But rather it stands a better chance of dying. If the cells all die then that's good, the tumor will then be like a huge scar but it won't be active cancer anymore. So hearing that there are dead cells in the big part is good news.

Right now Nathan's dealing with so many side effects. He doesn't produce tears anymore in his left eye and probably never will again and he still has a lot of swelling in his face. His new thing is nightmares, he has them every night, so none of us have been getting much sleep which is why I'm so behind on the posting. He goes through phases where he handles his treatments well and times when he gets fed up and lately he's been fed up and I really don't blame him. He panics every time he sees a needle now, when he used to take it with stride. For those of you that don't know, most of the time he gets a needle put into his metaport he doesn't flinch because it's numb but he goes crazy just seeing needles now a days.

As for the rest of us, we're still just taking everything one day at a time. These last two weeks have been pretty low for me, I just want Nathan healed so bad and having to keep him so isolated and stay so isolated as a family really gets you down after awhile, especially for our family because in the past we were always on the go. A high point was last week when we got to go to the zoo, they had a special night just for children with chronic illnesses and their families. I'm trying to stay positive but I have so many people that ask "can I bring so and so over to play?" And I have to say no. It's very rare that Nathan is allowed to be around people such as on memorial day and we literally jump at those chances when they arrive but they're very far and few in between and even when we have them Sam and I always have to look out for infection because we know just how serious a little infection can be and every time he's exposed there's a risk. Those days are so special but bittersweet because we're reminded of how much Nathan is missing and how much we're missing as a family.

Despite everything I wrote above, he's been pretty active - still playing a lot, especially with Peyton. I just wish I knew what his dreams were about. I'm praying hard over this upcoming test, I just want to hear that a TON of cells are now dead. I'm not sure when we'll get the results from the test but will let you all know in due time.

Peyton and Sam are doing great!

God Bless

How Families Give Back

I'll be posting again soon but wanted to share this nice article that really touched me!

God Bless

Special Preschool Gives Kids With Cancer a Sense of Normality

Good News

Dear Lord,

You never cease to amaze me!!! You told me not to worry, you said you'd take care of us. Lord thank you so very much, even though the big part of Nathan's tumor haven't shrunk, I came in and found out today a lot of the cells have died. Dear Lord, thank you, thank you, thank you. I can't thank you enough. It's big but a lot of it is dead, Father I just thank you.

I keep saying I don't know which direction this cancer is going to go but for right now it's dying. Lord thank you for hearing our prayers. Thank you so very much, words can't express what I'm feeling right now! I'm so thankful Lord. Thank you, Lord thank you so much.

We have a PET scan coming up in June that will show what percentage of the tumor is dead. Lord please continue to kill this tumor! Please Lord we want Nathan to be cancer free so badly. Please remove it and I pray that it, nor any other cancers return.

But oh Lord please let us learn and grow as a family as we continue to go through this valley.

Lord thank you so much for remembering my son, we don't deserve such good news anymore than anyone else, thank you for blessing him with such positive results. Lord please continue to blanket him with your comfort and protection.

And Lord please forgive me. I get disappointed so easily and I was highly disappointed when I found out the big part of his tumor was still there. Lord I need to quit worrying and step back and let you handle your business. You know what you're doing. You see the big picture. Help me not to panic at the least little thing.

Dear Lord thank you so very much.

In Jesus Name, that wonderful name.

Amen
- Posted using BlogPress from my iPhone

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

Scan Results

Forgive me for being so lazy about posting lately. I wanted to share Nathan's scan results and it's getting late now so I'm going to copy and paste what I wrote a friend of mine regarding his results (I hope you don't mind!). I'll elaborate more late but for now I just wanted to put something out here.

Nathan got his scans on Monday, thankfully the cancer still hasn't spread anywhere else. The tumor in his head is huge, it stretches from his behind his eye (though not in his eye), in his brain cavity (though not in his brain) all the way down into his throat. The part in his throat and behind the ear has shrunk a significant amount which we're happy about, but the part of the tumor that's more in his head closest to his brain remains the same size which I'm not happy about. They said it's good though that it hasn't grown and the fact it hasn't grown is proof that the treatment is starting to work. We haven't seen pictures of the scans yet they just called us with the results, we'll get those next week and we can compare those to when he was first diagnosed in January to get a better idea of the difference. Already his left eye is moving better (it used to just stare straight ahead because the tumor was resting on the nerve that controlled movement) and behind his ear there was an obvious lump that we could see but don't see anymore. He still has a long way to go with the chemo, they do it in cycles and he completed his first cycle and will be starting the second cycle on the 27th. The surgeons still won't touch it because of it's location so we're just praying that he continues to respond to his chemo as we move forward.

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