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

Changing gears a little bit

So I get asked a lot what Sam and I have been up to outside of cancer our hobbies etc. You want to know things we find time to do that are interesting to us. We cry at times but not all the time :-) We still have our interest and I'll share one of mine.

Sam and I both decided on homeschooling for our children so I've been taking time to learn as much as I can about it. When I used to work at the YWCA years ago, we used to get a lot of homeschoolers enrolled in our classes. Truthfully I knew these kids pretty well through coaching but never really paid attention to what homeschooling was about. Also when I was working I had a manager who homeschooled all 5 of his children, again at the time I didn't pay too much attention.

Since Nathan was born it has been something we'd been interested in off and on and I'm no longer in touch with the families from my YWCA days or my old manager but I really wanted more information on it. I found out one of my cousins pulled her 3 girls from school and had been homeschooling for a year and I contacted her and she couldn't say enough good things about it.

So I went to a homeschool conference not too long ago. I'd venture to say there were over 5000 people at the conference. It was a two day conference and had tons of workshops. The nice part about it was most of the parents came with their children and I got really bold and would just walk up to people and introduce myself and tell them my how young my children were and how I was planning on homeschooling and I'd conduct a mini interview with them on the spot.

Everyone I stopped was more than willing to talk to me and I got so many people's contact information. I talked to people who were just starting out along with people who had graduated some children etc. I was delighted to talk to quite a few teenagers and get their perspectives. It was a wonderful experience. There's so many myths about homeschooling that just aren't true at all and it's amazing when you start to research something how much you can learn about it and how so many things you thought can end up being wrong.

It was interesting to learn the pros and cons of homeschooling, what are the success rates of homeschoolers and what makes them successful, also another interesting thing to me was how many former teachers were there who are now homeschooling their children. I'd venture to say over half of the people there used to be school teachers (I'm saying this because during one of the keynote speeches they asked the former school teachers to stand and over half the crowd stood.) Another thing that intrigued me was that the speaker noted that statistically it's usually harder for someone who is an ex school teacher to homeschool than it is for a parent who hasn't taught.

It was interesting because a huge myth is if you haven't been a teacher than how can you homeschool. So during my networking I asked some of my new found friends who were ex teachers why this was and if they agreed with the speaker and I didn't run into one who didn't agree (I didn't ask a TON but I asked a few). The reason is they're used to teaching a certain way to a big group of students. Home classes are smaller and at home you can tailor your lessons to the individual when at school what you teach is general to a whole class and not the individual. And homeschooling is different than schooling which is something most people who don't know anything about homeschooling don't realize (I didn't realize that either). And for those who were teachers they have to do away with most of the methods they used in the school classroom in order to teach at home.

I continue to read as many books as I can get my hands on and I continue to network with people. I've come in contact with a few more people since leaving the conference who are homeschooling (it's actually a lot more common now than people may think). Also Nathan's speech therapist is a huge homeschooling advocate, so she provides us with a ton of information that is so helpful.

Anyway I could write a week long series on what I learned about homeschooling over the last year, I'm in contact with so many people, I have links to so many blogs and a pile of books etc. it's become one of my favorite topics but I won't lol. When our children are older maybe I'll start a homeschooling blog about my experiences who knows.

Also prayer and bible reading has become a way of life for me. I said at times that some positive things do come out of a bad situation and my life has been filled with prayer lately. There's a really good sermon I'm going to post below by Pastor Cymbala of the Brooklyn Tabernacle in New York on prayer.

So many Christians don't pray enough and don't know how to pray and I learned from this experience with Nathan that sometimes God will put you in a position where you're FORCED to learn. I liken it to a sink or swim situation and this has been that for me.

It's taken me awhile to get to this point even in the midst of the journey it's taken me awhile and I'm still growing but I've grown to love talking to God all the time. Taking all of my fears to Him.

No offense to anyone who've tried but the greatest comfort from a dark situation can come only from our Savior. If you're in a dark situation there's nothing wrong with calling people but I promise you, no one will be able to comfort you like Christ. Read his word and call out to him.

A good book I recommend is Traveling Light. I read it years ago but pulled it off my bookshelf recently to read again and it's just a wonderful book.

God Bless

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.

Updates

Hi everyone, here's some really quick updates.

First my friend's little guy has been moved out of the ICU!!!!!! Thank you all for your prayers, he's still in the hospital but he's out of the ICU and we're happy about that!

Nathan got his results back and well we're seeking a second opinion right now on what we should do moving forward. I'm not really going to share them on this blog not because I don't want you to know but they're quite confusing and I don't want to leave you all thinking, 'huh?' I'll just say they were half good and half what we didn't want to hear.

We still trust our medical team but it doesn't hurt to seek an outside opinion which is what we're going to do. Right now Nathan is set to undergo testing again in 4 weeks instead of the standard 15 so his medical team can keep a closer eye on things.

Last week was pretty confusing and honestly kind of hard but again moving forward we're trusting God with our son and truthfully not worrying about it. All four of us are together right now and that's really been my focus lately and what I truly care about.

There's a song I just heard recently that's kind of become my motto. I'm not a country western fan but I've fallen in love with the lyrics of the below song. Now don't get all worked up when hearing it because right now Nathan is still doing ok but even before his results I've kind of taken on the below song as our household anthem and we've just been living life lately. We're limited in where we can go and what we can do but we live it up anyway!

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.

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