Wednesday, September 26, 2012

A Summers End.

Well, September is almost over, and that means so is summer. On that scary fourth of July evening I believed it was a summer lost. But, as it turned out the Lord gave us many new and great summer memories this year. I am so thankful for the couple camping trips we got in this year, and so glad that the kids were able to enjoy at least a bit of what our usual summer looks like.

It feels like things are eerily normal. Kids are fighting, Noah is in school, Holly in preschool. We are doing most of our normal activities, going to church and so on. It feels good but different in a way that I can't explain. Maybe it's that new normal that we have been trying to find for the last 2 1/2 months. This round of chemo is different too. I don't have to give him any meds at home except on the weekends. And that feels nice, but so different than what we had come to know. Now Noah is going for chemo IV every 10 days. So this week we didn't even have to drive into the city, which also felt very strange. It feels like I am managing better. I am able to cook and bake (not that I need to, our freezer is still FULL!) but as a friend of mine who is going through a cancer diagnosis in one of her children as well said; it was just nice to feel normal and cook for my family again. And it's true. It feels nice to do things that I did before Noah had cancer. It will feel so nice when we get to that place where we can be a help to others in need. The love and grace and generosity that have been shown to us has inspired me to do so for others. I look forward to that.

This time of year is my favorite time of year. I love the fall. It's this time of year that makes me think of my grandma who will be gone 4 years in January. I think of her for several reasons. She was a canner, and I remember the way her house smelled of vinegar and pickled beets and cucs. I love that smell and I had to can some beets this year just so I could smell that vinagery smell and think of her. She had cancer. It has been hard to explain to Noah and Holly about why she died and why we believe that Noah will not die from cancer. But it just reminds me of how the Lord places people and different experiences in our lives for His purpose. Grandma taught me many things while she walked this earth, and she continues to while in Heaven. God has given me amazing people in my life, all for purposes that I can't know until sometimes they are gone, or we walk a path that is so very unfamiliar.

Yes, I feel better about the diagnosis. Is it our new normal that we are getting used to, or is it the Lord working in my life, answering prayer, revealing Himself and showing me what grace and mercy is like.

Prayer requests: pray that Noah's leukemia will be completely healed and never ever return. Pray that he does well in school and wants to go (he had a bad day today). Pray that his body handles this round of chemo well without the bad side effects. Pray that Holly can deal well with our changing lifestyle, and adjust to it. Coltan is going for a CT scan soon, pray that his lung is completely healed and that he will not need surgery to remove the part that didn't develop properly.

Thank you all again for all your support,

Monday, September 17, 2012

Port A+

Well, week one with a new port could not have gone better. Noah did so well during surgery and recovery was so much better this time. He was already back to school by Wednesday afternoon and by Thursday and Friday he stayed the entire day. He is feeling good, had a few bumps into on the bus, but overall, really good. He touches it and says it feels like there is a little ball in his chest. So, I tell him 'don't touch it!'. He is my child that cannot leave anything alone. He likes to pick at stuff until it breaks, so let's hope this new port doesn't fall victim to that too!

So far we really havn't seen any side effects from the new round of chemo started last Tuesday. He complains a bit of a sore throat so hopefully that's not the sores starting. We go again on Friday Sept 21 for his next chemo treatment.

We are still seeing some negative feelings that he has towards Holly, and that's hard to deal with. He has also been disobedient for Chris and I and that's also hard. It feels different now to punish him, yet we know that we need to.

Again this week we have felt the kindness of a stranger. It is absolutely unbelievable how we have been supported. It's so overwhelming and it just brings me to tears thinking of it. I have a little more hope that I will be able to pay it forward in the future now. Until now, it was hard for me to visualize what life was going to be like. I felt so incompetent for the first couple months. Now, I feel like I am starting to get back to myself again. Starting to feel our way around what life with cancer is like. For now anyway. I know that things can change very quickly, especially with chemo. So, we take each day as it comes. I don't like to say one day at a time. That phrase is starting to bother me. It's not easy to take things one day at a time. I don't know, maybe it's just my sleep deprived brain talking crazy again.

Prayer requests: Complete healing for Noah, that he will be cured of this cancer and it will never return. That he will be nicer to Holly and more respectful of Chris and I. That I will be more patient. That the side effects will be so minimal that we don't even notice them. That Noah will be able to attend as much school as possible and able to play hockey this winter. That Holly will do well at pre-school and not feel too left out in all this. That Coltan will continue to be my sweet bestest little baby:)

Thank you all

Friday, September 7, 2012

It's hard to not ask why

I started a port the other day and I must have hit a button that deleted the entire post. So of course I can't remember all the I was saying, but here is a bit.

Noah started school this week and is just loving it. He has made new friends and connected with old ones. Which is really nice seeing he is in a new school this year. But as you may know, he is scheduled for surgery on Monday Sept 10th. He is getting another port put in as the next round of chemo is alot of IV chemo. He wants one. We feel nervous. He also does not want to miss any school, and on Tuesday is a clinic visit so he will be missing those two days for sure. I just wish things were normal again. Where he could just go to school and be with his friends and worry about things only a 7 year old should worry about. Not surgery or IV's or chemo or cancer. It's hard to not ask 'why me'.  

And then I have those moments where I am so thankful that we know what he has, and there is treatment for it. And that Noah seems to be responding very well to it all. There are so many blessings in the midst of this. I wish that I seen them more. They are there, but I have struggled. I have struggled to always look for them. Its easy to focus on the bad, the unknown, the future that is so uncertain with no guarantees.

Please pray that the surgery goes well, the port can stay in and heal properly this time. Pray that Noah can return to school and be as normal as he can be. And pray for us (Chris and I). Chris can see the positive very easily. I need some help in that area.

Last night as I was saying good night to Noah in his room, I lay Coltan down beside Noah and he just hugged him and said "I love you Coltan, I will always be here for you". Pray that's the case. Pray our children will all grow up and become close and strong from this experience.

Thank you all so much for all you do. We are still being offered prayer, support, food, and gifts each day. It's something words cannot describe.


Saturday, September 1, 2012

A bit of humour

A dear friend of mine encouraged me to write this story down so that when all this hardship is said and done, we can look back and remember that there were funny times too... so I thought I'd share the story with you all.

Last week Wednesday Noah had his regular spinal tap. He had to fast for it, and Chris and I always fast with him. But, we have not been able to part with our morning coffee, so on the way through town to Winnipeg, we stop at McD's for our 'fix'.  This particular Wednesday we decided to bring Holly and Coltan to the hospital to see what Noah goes through every week. So, of course times have changed since we were kids and now we cannot drive to Winnipeg without the DVD player going in the van. Just after we pick up our coffee, the kids are complaining that the movie isn't starting. So Chris pulls over in the parking lot by McD's, gets out, opens the side door and fixes the movie. All is well, we are off.

We get to the parkade. We park in the William parkade across the street from the hospital because its 'cheaper'. We get out, get the stroller out, get Noah's lunch kit out as he needs to eat as soon as the spinal is done, get my oncology binder out that is packed and overflowing with papers, get the kids out, except for Noah. 'I can't find my flip flop' Noah is saying. What? your flip flop? What do you mean you can't find it, we have just been in the van from home, how can you lose a flip flop in the van?

We search the van. We look under every seat, twice, we look under the van, in the side holders on the doors of the van, in Coltans carseat, everywhere. I look inside the zipped up diaper bag, everywhere. The flip flop is gone. How can you lose a shoe in the van?   As Chris and I get increasingly irritated as we have now searched our van through and through and cannot figure out what has happened to the flip flop, he asks me, 'we didn't get out anywhere did we?'   'No!" I reply, ..... Stupid McD's. Then it hits us, the flip flop must have fallen out when Chris opened the van door after we stopped for our coffee. See what happens when you don't eat?

Ok great. We are now in the parkade, 20 minutes late for Noah's spinal because we have ripped our van apart looking for the missing flip flop, and now have to figure out a way for Noah to walk across the street, through the hospital and to his appointment with no shoe. But wait! I knew there was a random sock somewhere in the van. It had been in there for probably a month or more and every time I see it I think 'I should really take that sock inside'. But I never did. Praise the Lord where is the sock!? I find the sock. Noah now has to walk across the street and though the hospital with one red flip flop and one grey disgusting looking sock. It was completely embarrassing. But hey, we are in down town Winnipeg, I'm sure there have been worse things to see:)

So we get to our appointment, and as if walking through HSC with all our kids and Noah with his one flip flop and one sock was embarrassing enough, I yet have to apologize to the nurses and explain that we lost a shoe and that's why we are late. They thought it hilarious. So the kids were rangy and the appointment ran late (partly because of us) and now we have to walk back through the hospital, across the street and into the parkade with one sock and one flip flip on. Very nice. We then had to stop at Walmart to buy shoes for Noah because we had other errands to do after his appointment. I go into Walmart, get to the shoe department. They are completely out of boys sandals and crocs. Great. Really? So, Noah ends up with a ladies size 5 blue flip flop. He has worn them once.

Yes, I can now look back on that day and smile, but I sure wasn't smiling then:)