Florida 2014

We made it! Our trip was a success! But oh the worry we went through to get there.I had so many people praying for me, and I truly felt it. The plane rides were the hardest for me because of Coltan's lung. I really struggled to believe that he was going to be ok. I had timed his breaths before we left so that I could tell if he was breathing faster on the plane and that would indicate that his lung was giving him trouble. But all was well. All three kids did amazing on the way there and even on the way back, and on the way back we landed at 12:30am, by the time we got home, got the kids into bed it was almost 3am. So we all rested the next day and now they are back to school!

But enough about the travelling, now about our trip! There are no words to describe Give Kids The World. It is the most amazing place I have ever seen. What they do for families with sick children is truly amazing. Our entire stay there was paid for. We had a villa all to ourselves, and had more food than we needed. Everyday when we got back from what we were doing that day there were presents left on the table for the kids. It was a good thing I brought an extra suitcase because we filled it with toys on the way home!

The village is so beautiful. The villas look like fairy tale houses on the outside, so beautiful. All the grounds are perfectly manicured and the buildings all look like they are out of a story book. It was so fun to just be there and walk around, taking it all in. So often I had tears in my eyes as we walked around because I just could not believe how blessed we were to be able to stay there.

The volunteers are so friendly and helpful. They do anything for you and are happy to do it. Here are a few pics of what we experienced at GKTW.

This is our villa. Each Villa has the family's name on it, and it truly feels like a home.

Here is another pic of our villa. They are all side by sides, so it is only half of what it looks like here. The walls were a little thin, so I felt bad for the family next door as Coltan has quite the voice!

Here are the kids posing on the porch of the villa.

Chris was very used to ordering pizza every night. We aren't used to being able to order pizza for delivery and have it delivered in minutes...and free:)

And yes that's the crib in the kitchen. That's what happens when you put wheels on a crib and hand it over to a 2 year old!

This was the kids bathroom. It was HUGE!

This was the kids shower, it was also huge! All 5 of us could have easily fit into it!

This was the jetted tub in the kids bathroom.

This is where Noah and Holly slept, we tried Coltan in there with them but that was clearly not going to work! So we moved the crib into our room.

This is our room. 

This was our bathroom.

Here was the living room, this is very clean, must have been day 1!

This tree was part of the castle at the village. It snored all day:) When you are in the castle, you can go inside the tree. It's all lit up inside, very beautiful.

This was the view from our villa. There was a huge pond with a fountain. 

Here is the Merry Go Round located right outside the restaurant. The kids rode it frequently!

Here is the Gingerbread House. It's the restaurant in the village.

Here is the castle in the village. Inside it is filled with stars that each wish child gets to put their name on. The walls and ceilings are filled with them. It really puts it into perspective how many sick children have been there. It was very emotional for me to be in there. To know my son's name is in that castle. To see my friend's little boys star and know that he is no longer here. It was hard.

Here is Noah writing his name on his star. 

Now for some pics of the adventures we went on! We arrived late Monday, so Tuesday was our first day. We decided to go to Aquatica, which is the water park at Seaworld. 

Our first family photo of the trip

Coltan was sooo good in his stroller that week. I think he was entertained with the many things just to see everywhere.

Holly LOVED anything fast and crazy. Mom and dad thought this was FAR too dangerous for her to go on, this was just the beginning! 

Here they go marching up the slide...again

Dad and Noah taking a break. We parked our stuff in the sand at the wave pool.

Coltan loved the sand

So did Hol

Wednesday we went to Seaword. It was a LONG day, but great.

This is the Atlantis ride behind them. The questions about Atlantis are still coming in from Noah. 

I think Holly would still be dragging Chris on this ride if we let her!

This is what happens when Grandpa Friesen gets rooked into too many rides!

Thursday we spent at Legoland. This was the place that Noah wanted to see the most.

It was so amazing that all these things were made out of lego! This elephant was huge!

This whole car was lego

Holly and Chris on another roller coaster. That girl is a rider for sure.

These miniatures were really cool.

Thursday also was Coltan's 2nd birthday. At the village they celebrate Christmas EVERY Thursday so Coltan was able to celebrate Christmas and his birthday on the same day:) He also got double the presents!

The village had his cake ready and waiting for him.

There was also a balloon waiting outside our front door that morning. It was a special day for him.

Friday we spent the day at the village. We went to the water park there and tried to 'rest' a bit for the last leg of our trip. 

Saturday we went to Magic Kingdom. It was HUGE. 

This castle was so beautiful.

We went through the Swiss Family Robinson life size tree house. The kids love this movie and thought walking through the tree house itself was very neat!

We went on an Amazon Cruise, and seen some very real looking animals. But these were not real.

Although they looked it!

The elephants looked really real.

This was a HUGE steam boat that went by often. Coltan loved it.

This was a run away train roller coaster. The kids loved it, especially Holly.

All the buildings were so amazing. We went on a Peter Pan ride that was really cool. It was like you were flying above the city with him.

Holly was able to meet Rapunzel. 

And Snow White

And Sunday was our last full day. We spent it at Animal Kingdom. I loved Animal Kingdom.

Our first stop...Africa

This was a highlight for all of us. We went on a real safari and seen these amazing animals up close, no fences!

This was a baby giraffe, so precious.

The giraffes were very close to us

This baby elephant was a ways off, but still spectacular.

The rhinos were bigger than I thought!

This guy was very close. Kinda scary, when we looped around him, his mate was sleeping behind him. Very neat to see.

We were also able to see Gorillas in Asia. Although these guys were behind the glass.

All the grandparents posing in front of Mt. Everest.

Chris and Holly and Albert did this roller coaster.

And our Noah. The whole reason for this amazing trip:) I hope you always remember this my son. It was amazing! Let's not wait too long to go back:)

And that's it. A nice break in treatment. Noah is about half done. It was so nice to get away from our regular life for a bit. But now that we are home, it's back to normal pretty fast. Noah has chemo on Monday, and starting the steroids again. The next 2 weeks will be rougher than the last that's for sure. But this break was welcomed and will hopefully help us get through the next year and a half.

Thank you to all who prayed for us. Truly. Thank you.

Melissa

Florida

Well the time has drawn near, very near to be sure. 3 more sleeps until we board the plane. I think we are in the clear, we have pulled the kids from school to eliminate excess exposure to illness and such. We havn`t gone to church, nothing. We have been in lock down mode. Needless to say I think we are all really ready to get to Disney Land! I have been homeschooling, which was waaaaay harder than I thought. Especially during a chemo-steroid week. Some days were impossible to get things done. But we managed.

I have been feeling anxious. Coltan`s lung issue creeps into my head, and I have had to really work with myself to not let the crazy thoughts get out of control. I am also a bit nervous for flying, and flying with the kids too. Thank goodness we will have all the grandparents with us!

I think we are all finally letting ourselves become excited for this trip. The kids knew that if someone got sick close to the trip, then we couldn`t go. Our kids have had to act much more mature than their age allows. They have been asked to do really hard things, and they have. But now, we are 3 sleeps away, and it really feels like we are actually going to go. Please pray no one gets sick!!! We really want to go. We need to go.

We are all so excited to stay at Give Kids The World Village. This is a once in a lifetime opportunity. We can travel back to Disney, but we will never be able to stay there again. It seems so amazing, and we just cant wait.

So, our flight leaves Monday March 10 at 3pm. Please pray for us. For all of our health. That we will manage well on the flight, and that we will have an amazing week. That none of us will be sick, that we can just be together and have this time as a family.

Thank you all for your love and support. We couldnt make it without it.
Melissa

Seriously

We are feeling very defeated today. Feeling like our trip will never happen. Holly came down with a fever last night, sore throat, headache, no appetite and no energy. All signs of chicken pox. If this is the case, the boys will be at risk for getting them over our trip. This is awful. It feels as though we cannot get a break. It is constantly one thing after another.

We had just gotten the go ahead from the surgeon for Coltan to fly on Thursday. I was just starting to accept this and actually starting to think about the trip again. And now this. It's like we can't even process one thing before the next thing hits.

We have sent Holly to grandma and grandpa's for at least 2 nights. What good this is, we don't know. Honestly, how can we prevent this? I feel like a horrible mom for sending my poor sick little girl away. When all I want to do is hold her and take care of her.

We are so tired of doctors, and hospitals, and sickness, and the possibility of sickness. Its neverending. Ever.

We also just made the decision to pull the kids from school because of all the chicken pox outbreaks. Now I am wondering if it's all too late. Or just a big waste of time and energy.

Please pray for us. This trip is so important for us. But it feels like its just slipping away. Please pray that Holly will get better, her fever will break and it wont be chicken pox. Please pray that Noah and Coltan remain healthy. This is so stressful. So hard. Please pray that Chris and I can remain hopeful. It's really hard sometimes. Please pray that we remain positive and faithful, and hopeful.

Melissa

What the surgeon said

I met with the surgeon on Monday, expecting him to confirm what the nurse told me over the phone, that it was not safe for Coltan to fly. Instead as I sat down, he says to me that the chance of Coltan's lung lesions rupturing as miniscule and that we should not cancel our trip.

WAIT, WHAT??

Yeah. That's where I am at right now. He said that the nurse didn't have all the information, or something along that line because my brain was still trying to comprehend what he just said. And that there was a greater chance of the plane crashing then Coltan's lung leaking air.

So why in the world can I not accept this?? I cannot get what the nurse said out of my head. I know that I should trust the surgeon, he is the best in his field, but where did this mis communication occur? How could the nurse have said that she spoke to the surgeon and he advised no flying, and then the surgeon says its such a small chance to not cancel the trip?

I feel so torn. I wish the nurse hadn't said anything and that I just spoke to the surgeon directly. But now I have these two drastic differences of information in a matter of 3 days. So my mom advised to make another appointment with the surgeon and have Chris there with me so that its not just falling on my ears and the weight of the decision isn't falling on my shoulders, as it feels.

I so appreciate your prayers and support in this. It's been so difficult. We meet with the surgeon Feb 13. From that date it will be less than a month until our trip.

As for Noah, he is doing well. He is still difficult emotionally, and asked me last week if I thought he was going to die from cancer. So I know he thinks about it, and I know what I think matters to him. It still isn't easy hearing your child ask you that. Especially if you cant answer it with 100% certainty. But I didn't show my hesitation. I answered with a strong no. But honestly, if you are on facebook for 5 minutes, you see another new cancer diagnosis. Another angel. Kids with leukemia, just like Noah. Same age. Everything. It's hard not to doubt at times.

But he still goes to school, I kept him home a couple days due to a chicken pox outbreak in his class. We have until Feb 7 to see if he was exposed. Please pray he doesn't get them.

As for Holly, she buckles under Noah's relentless bullying on her. Its heart breaking, and I cant stand it. We may resume counselling with Noah's first counselor that can see him again. It's just so frustrating and nothing we say or do stops him from bothering her.

My anxiety has been hard to handle. It started in November and has increased. I have meds but havn't started them. Not sure if I will.

Thanks for your prayer, it gets us through our days.
Melissa

Heading out the door

Just about to head out the door to meet Coltan's surgeon today and see what the plan will be regarding surgery and flying. But I just wanted to share with you something that occurred to me last night and reinforced this morning.

Last night as I was in the shower, feeling the water hit my head and face, it made me think of how the water seemed like the stress in my life. And there is so much with having sick children. But God's grace is like an umbrella that prevents the water from drowning me. I can still feel the water hitting the umbrella, but it's not killing me. His grace is enough.

This morning as I was reading my bible app on my phone (which by the way has been my saving grace many a day) this is the verse that popped up:

Psalm 5:11-12

But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you. Surely Lord, you bless the righteous; you surround them with your favor as with a shield.

It seems as though the 'umbrella' that I feel is my shield. My protection. Keeping the faith.

Thank you for your prayers and encouragement.

Melissa

A Set Back

We received some news last night that Coltan would not be able to fly with us to Florida for Noah's Wish Trip. The trip is booked for March 10-17, all of us are ready to go, grandparents, and uncle. But I had this feeling in me to call Coltan's surgeon and ask about his safety on an airplane, particularily the pressure. Sure enough, the pediatric nurse that works with the surgeon called me back and said that it would not be safe for Coltan to fly. The pressure in the plane could cause the lesion in Coltan's lung to burst and fill his lung with air. It could be fatal.

My heart sank when she said this to me. We are all ready to go. Flights are booked. And now this. I just couldn't believe it. Yet I knew there would be a possibility because I had that feeling to call and check it out. I started to cry on the phone with the nurse. I just couldn't help it. She started to cry too when she found out that we had this trip planned because of Noah and his battle with leukemia, and that our whole family was going too.

She was very nice and explained things well to me. She said that I should come in Monday and speak with the surgeon and maybe we could retest Coltan and see where his lung is at. But if there is any risk at all, we will not take it. Now it's a matter of figuring out what to do, if we want to postpone the trip until after Coltan's surgery, or have my parents drive with him. Or leave him here with my parents,or leave him here with someone else, and we wouldn't know who to leave him with at this point.

Perhaps what is the most hard to accept is the big reminder that this is. Coltan is sick too. And we knew that since I was pregnant, but he doesn't look sick or act sick. And with Noah's cancer, that is where our focus has been. This is a huge reminder that Coltan will need major surgery to remove part of his lung. And it hit me really hard. My boys are sick. And there is nothing that I can do about it. Nothing I can do will take this away. It's so very hard.

I like to think that I am a normal mom. But I'm not. I'm a peds mom. (pediatric mom). I think differently that other moms do because I HAVE to. A simple plane ride isn't simple. A plain old cold, isn't just a cold. A kid in school with chicken pox, poses a huge threat to the safety of my child. This is our life, our reality. Sadly I am not alone. There are so many of us, and sometimes it really get's to me. Seeing those parents with their sick children. Seeing my friend, lose her little boy. Seeing my boy fight a battle that no kid should have to fight. It's overwhelming some days. And I only get through it because there is no alternative. I have to. And even though when I hung up the phone with the nurse and threw my hands up in the air saying 'what now'? God. What now? I know that He knows. But sometimes it feels extraordinarily hard to have faith. Faith that things will be ok, because they so often aren't ok.

So please pray for some clarity for us and our families, as we need to figure out what to do next. My prayer remains the same, that Coltan will be healed and Noah too. That Holly will not be scarred from being neglected during these years of focusing on her brothers. That my anxiety (which has been increasingly bad since November) goes away. Thank you all so much for remembering our family. We do feel your prayer, and I believe it get's us through every day. Please think of all the other families that are fighting for their kids. The list is long and it grows everyday. And even though you don't know them by name, God does.

Melissa