Sunday, September 14, 2014

Summer 2014

Wow, I cannot believe that May was my last time I wrote on here!  I have been meaning to. But I just havn't. Sometimes its easier not to write. But I also know it does me a great deal of good,  So, summer. Has came and went so fast. In fact, it feels like we havnt had a summer at all. I dont feel ready for Fall. Not in the least bit. Fall time has been a hard time for me since grandma passed away 5 years ago. She passed away in January, 2009, but Fall is when I think I remember her the most. I remember the way her house smelled with canning beets and pickles. I remember the warmth of it as I walked in the entrance. I miss her so much. This is now the second Fall that we are going into without my great grandma now too. I miss her so much as well. I miss that trailer she lived in. As Halloween approaches, I think of her often. Her apples that she handed out and the toffee candy that nobody liked! I remember her stale chips that she would offer every time I walked into her house. Which was often because she lived right next door. I dont think people realize how close of a family we were. I am also missing my great Aunt, who passed away almost a year ago. She and my grandma were sisters. She was also the daughter in law to my great grandma. I have often thought of her this season. How many times I would call her with canning questions and she would always help me out. Oh how I miss these women, I feel this Fall has been extra hard.

And with Fall comes the start of school. So far so good. Noah has a teacher whom he loves, and Holly does too. It's been different having just Coltan with me at home all day. He misses them.

Noah had chemo last Monday, so a week ago tomorrow. He has been on steroids all week and its been rough to handle. He is so awful to Holly. He says horrible things to her, and it hurts my heart to hear it and to see her take it. Some days I feel convince that she will grow up to absolutely hate him. I hate this cancer for that. For turning Noah into this horrible mean brother. We just are out of ideas on how to make him stop this behavior. I contacted the the oncology office here in town. They do not have a program for kids, but the oncology counselor has agreed to meet with Holly and Noah and try to help us in some way. I am praying this works. I feel like we are never happy. We certainly aren't normal. I just cannot wait until this chemo is over with.

Even though we will celebrate the last day of chemo, I know that it doesn't end there. Many more visits to cancer care for a long time will follow. Plus the fear of it returning. You cant tell a cancer mom to not think like that, or not to worry. Because we simply cannot. We see it every day. Kids relapse. And to think it cant happen to us would be naive. I never thought I would have a child with cancer, and here we are. I dont want to go into anything with our eyes shut.

At the end of the month we are attending a family cancer camp that the Candlelighters puts on for families like ours. Hopefully we will meet some other families like ours and not feel so alone. And the kids are really looking forward to staying in a hotel and swimming:)

As for Coltan, the surgeon had originally wanted to do surgery this September. The CT showed that one of the cysts on his lung had slightly grown. But upon meeting with him and discussing it further, he didn't think we needed to rush it. And Chris and I felt relieved because we didn't feel ready to send another child of ours into the OR. So for now we monitor it and put the surgery on the back burner for now. Unless a miracle occurs, he will need surgery to have part of his lung removed. This gives us a bit more time to pray for a miracle. Because the thought of sending Coltan in for surgery is too much. Some days its all too much.

There have been alot of changes here. Chris has recently quit his job at the insurance place. He now does full time personal training and teaching self defense...his all time dream.  I have been very busy with my doula work, and am loving every minute of it.  To have a job so rewarding is a true blessing. I recently seen a doctor speaking on fb about delivering babies. He said that for those moments that you are there, witnessing a life be born, brought into this world, it makes you forget about all the garbage going on outside those doors and even in your own life. It's so true.

So this is where we are. Still keeping on. Chemo every day. Once a month in the city, and put to sleep ever 12 weeks for chemo in the spine. It has become our normal. But that doesn't mean that it's always easy. It doesn't mean that I dont cry before bed, and get down on my knees and pray that God will save my children. Because I do. More times than I will admit. Sometimes I doubt whether its working. Whether my prayers are being heard. And then something happens, and God reminds me that He hears me. I got a message from a lady that went to our church awhile ago. She said that her small group prays for us continually. What a blessing that was to hear. I know God is with us I do. We are a work in progress though.

For now I have a few prayer requests. Holly came down with a cold that she is recovering from but it has passed to Coltan. He is coughing so bad, and I am worried its going to get into his bad lung and we will need antibiotics for him. Noah started to come down with it too, and that combined with the steroid effects is draining him. Please pray that these colds will disappear. That they will heal from them and be 'healthy' again. I am just starting to learn how to use essential oils, so I have been putting that on them. But I am still worried that I will end up bringing one or both of my boys into the ER this week. I also have a birth to attend and so its all a bit overwhelming.

Please pray that Noah will have more grace towards Holly. And that Coltan can witness a good loving relationship between his siblings and learn that instead of what he has been seeing and hearing. Pray that Chris and I continue to parent our children well. Make wise decisions and have patience and grace and understanding with them all.

Pray something big. Pray that cancer will become non existent. Every day I hear of someone else being diagnosed with it. Its awful.
Thank you all who do pray and support us. We feel it.

ps. we can now officially say Noah has less than 1 more year to go!!

Monday, May 26, 2014

May 2014

Well it's been awhile since I updated on here, sorry about that!  Since our trip, life has gotten back to normal pretty quickly. April came and went, and even though we thought a March vacation was too late in the year, there was still plenty of winter left when we got back home. It was still snowing at the beginning of the month. But now summer is here, and the kids are getting anxious to get out of school and start having some camping fun.

Again, we have been so blessed that Noah could attend his grade 3 school year. For awhile I was getting so frustrated because it seemed every week there was another chicken pox outbreak that we had to keep our eyes open for. But he has been really healthy, and only misses chemo days.

Noah's last chemo was on Tuesday May 20. He started the steroids for 5 days then as well. I know I said this before, but it just keeps hitting him harder and harder each month. He can go from raging mad to sobbing in a puddle on the floor in minutes. Again, his anger and rage is directed at Holly. For whatever reason, she gets the the brunt of it. We are starting to notice that the day or two after Noah comes off the steroids, then Holly starts to act up. I think its from the stress of the week. She feels it too, and it's hard to ignore Noah when he gets like that. It's during steroid weeks that Chris and I look at each other and wonder how we can possibly get through more than a year more of this.

Some days the reality of having a child with cancer is unbearable. If I let the 'what ifs" get to me, my anxiety goes through the roof. It's easy to say to someone not to think of the what ifs. Or to not worry. But it's quite another to do it. This is our life. I can't escape the stress or reality of it. It's always there. The chemo is sitting right there in my coffee cup cupboard. The scars on Noah's chest will always be there to remind us of what he is going through. This is our life, and some weeks are harder than others.

And some weeks, such as last week are crazier. Noah had chemo Tuesday, and Coltan had his CT scan Friday. Coltan did so well. He had to fast and the test was late, so it made it even harder for him. But he did so amazing. I held him in my arms as the anesthesiologist put the gas mask over his face. He screamed and cried and thrashed around trying to get it off. I knew this was what he was going to do so I had prayed all the way to the city for God to give me the strength to hold him and not cry as I sang to him to calm him down. It only took less than a minute and he was asleep, but then I had to lay him on the bed. It's a different sleep than when he falls asleep. His mouth was gaping open and his body was totally limp. It was really hard to see him like that, and then to immediately leave the room, and trust his life into the hands of people I only just met minutes before.

He was under for about half an hour, then woke up before they would let me get to him. He was a screaming mess when I seen him and he didn't know what he wanted or needed. He was also starving. But it didn't take long before he was allowed to eat and drink and then he was feeling much better. Although he did try to rip his IV out!

Now we wait. The surgeon should hopefully call this week with the results. This should determine if he wants to operate on Coltan's lung and remove the part that has cysts and emphysema. Please pray that he will not need surgery. Surgery is so hard for me to handle. I hate seeing my kids brought to the OR. It's not fun. And of course, not fun for them.

But like I said, this week was extra crazy. It was also enlightening. Sometimes things just seem to line up, or in some crazy way make sense and confirm that God is real and taking care of us. I seen that in a few different ways lately. Ways that were unexpected. 4 years ago last week I lost our third baby. A miscarriage that landed me in the OR. Two years later I met a friend who's little boy had been diagnosed with a brain tumor. When he passed away just over a year ago, I took note of his birthday. It was the same day that I had lost my baby. So while I was losing my baby, she was bringing hers into this world. And the day after Coltan turned 1, she held her boy as he took his last breaths, and passed away.  How crazy this life is. How strong we are! Only by the grace of God I tell you. Only by his grace.

Despite all this craziness this week. I felt unusually at peace and ease. I've been taking all kinds of supplements for my anxiety surrounding my kids and their medical needs, and whether its the supplements, or just the placebo affect, it's working. I also know there are so many people that pray for us. And I know in my heart that that is what get's us through these hard patches.

Thank you all who hold us in your hearts and prayers. We appreciate it more that you know! Please continue to pray for Noah, as he fights this cancer. That he will beat it. And for Holly as she struggles to fit in with her sick brothers. For Coltan, although he appears healthy, that surgery is not needed. And for Chris and I as we continue to parent our children as best we know how. That they wont grow up to hate us:) I'm kidding, kind of...

Monday, March 24, 2014

Chemo and a blessing

Today Noah had chemo. We were suppose to be at HSC for 9am... and we actually arrived at 9:15! Not too bad for us:) It was a bit longer than usual, the clinic was busy. So as we waited, I noticed another mom sitting on the couches across from me. I had seen her several times throughout the better half of the last year as she brought her son in for chemo. They were even admitted the same time Noah was in November. But we had never had the chance to say hello or introduce ourselves.

Her son is a couple years younger than Noah. And he was having a rough day. He was upset, yelling at his mom, not wanting to go in for chemo, all very familiar to me.  As he was freaking out on his mom across from me, I tried to not look in their direction (I know how hard it is to deal with a child like this and then have people stare at you). She was trying to calm him down, and then I heard a slap sound. I assumed she slapped him on the hand (yes we have to still discipline our sick children) but it could have very well been him slapping her in the face. He then ran off to the corner and sat very grumpily.

After a minute or so, I looked up at her. I asked "is he on steroids?" because I know very well how kids on steroids act. "No" she said, and mentioned another chemo drug that I hadn't heard of. I asked her if he had leukemia like Noah. She shook her head no, and then covered her face and began to cry. I knew that there was nothing I could say to comfort her, so I got up and sat next to her and rubbed her back while her tears flowed.

She told me he had a different kind of cancer, affecting his nerves. And that he wasn't responding to chemo anymore. They were trying different drugs at this point.

We continued to chat, but during clinic visits, you get a couple minutes to chat with someone and then either you or they are whisked off for a test or chemo or check up. So that was all that I learned of her that day. That her son is not responding to chemo, and they are going to try for another 5 months or so. And yet, we are connected. It's a feeling I have felt with other mothers sitting in the clinic. It's a bond that we all share. We all gave birth to children that have cancer. And we share each other's pain.

Yes, my son has cancer. But he has a cancer that they know soooo much about. They know what drugs to give and when. And for how long. And that the chances of survival are pretty good. And I am so very thankful for that. There is so much unknown in this cancer journey. So much.

Count your blessing people. Count them one by one. I sure am tonight.


Thursday, March 20, 2014

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.