Monday, August 24, 2015

A Real Nice Surprise

I feel very bad that it has been so long since I updated our blog. But what can I say, our life is busy! I titled our blog today as "a real nice surprise" for a few reasons. First of all, we did receive a surprise today. Not sure if its the weather feeling cooler out but I just had The National Lampoon's Christmas Vacation scene of Randy Quaid with his big __*!#^!__ eating grin on his face (kinda like I was today) telling Clark that it was a real nice surprise when he offered to pay for christmas gifts for his family. Today our surprise was that it was the last day Noah will receive IV chemo (Vincristine) through his port, and the last week of steroids (Prednisone).  I always knew Sept 11 was our end of chemo date, and still is for oral chemo daily here at home. But I thought he would be receiving another IV round and steroid pulse in September yet. I felt shocked when the oncologist said nope, today is the last day. And proceeded to make a requisition for surgery to have Noah's port removed, likely in October.

It felt as if I was driving a speeding wagon being pulled by horses and I was trying to rein them in. Digging my heals in the dirt, saying wait, this is too fast too soon! Can you believe that?? When Noah was first diagnosed in July of 2012, we seen the treatment plan and couldn't imagine how we would ever make it to this mark.Noah was just 7, Holly 4 and Coltan only 4 months. And now here we are, and I find myself afraid. Afraid of what life will look like without daily chemo, monthly chemo, and counts. Afraid that once he stops taking chemo, the cancer will return. I don't know how to worry normally. We have been on high alert for over 3 years now, how can we go to being normal? I just don't know how to do it.

Needless to say, I felt emotional today. In fact, I made the pharmacist tear up as she seen me tear up as we were discussing the last doses of chemo and how we should celebrate it. I took a lot of pics to today as he was receiving his last port access for chemo.The last time his port was accessed. I still don't believe it I think. And to already be making plans to have it removed....just seems crazy. I feel like everyone is telling me to be excited and happy, and move on and get back to normal. But it's impossible.

It's never easy going to cancer care. Never easy to watch your child receive chemo that is so toxic. To see their little bodies dwindling at times. And its never easy to sit there and watch a new family walk through the doors. With that look on their face, like a deer in headlights. Just going through the motions. That's the part of this cancer world that I never expected. To meet all these families just like ours. I met a new family today. And the hardest part was knowing that today was my son's last chemo day and not their son's. Noah has the "good" cancer. And it's hard to meet other families that aren't so lucky. This cancer world brings you through the ringer.

For a long time I was sick and tired of being the family who teaches every other family to be thankful for what they have, you know? Tired of being the example. But today I think was the first time that I realized that I had been embracing that role for awhile now. In my work, in my friends and family. That I was ok with people seeing our family for what it was, which was not always pretty. And feeling at peace that this was our life.

Today felt very odd as we walked out of cancer care. Each step I took farther and farther away from the clinic, it hit me harder and harder that this was his last time. We will be back....often, but this was his last IV chemo. I just can't believe it.


As far as how our family has been doing this last year, its been rough. The first steroid Noah was on (dexamethasone) was extremely harsh as it built up in his body. He would rage. And eventually started saying he wanted to kill himself. So, we had it switched which provided some relief for a few months, but we found the last couple of months hard again. So, praise the Lord, 4 more days! Noah's hair also started falling out again about 2 weeks ago. I thought he would lose it all, but it seems to just have thinned a lot. You can see his scalp in some areas, and it feels dry and straw like. Which brings me back to the first month he was diagnosed. Which in turn creates feelings of fear and relapse thoughts. But he has otherwise acted like a normal 10 year old boy. Swimming, biking, going to camp. A really great summer in my books.

As for Holly, we received a letter from her counselor/social worker that said they didn't believe she needed any further counseling. Chris and I both feel like she does. She's often upset at home, throwing countless fits and tantrums about anything and everything. She seems very unhappy. She screams in her sleep, often about Noah and saying to stop it. We think its because he has been so hard on her these last 3 years. So she definitely needs some counseling to work through these issues. But she's looking forward to grade 2, and piano lessons and hopefully gymnastics as well.

Our Coltan is our light. That boy has a sweet spot in both his brother and sister's heart that is so sweet to see. He's hilarious and so cute, and is the life of the party. His lung is holding up for now, and there is no plans made yet to remove the malformed part with cysts on it. However, this weighs very heavy on my heart and mind. I look at that sweet boy and I have a great deal of fear for his health too. The what if's take over sometimes and the weight of our sick children feels too much to bear. But as per our usual, we push on and Coltan is very excited to be attending pre-school this fall.

Please continue to pray for our family. Without that, I know we would not feel as supported and loved as we do. We have put all our trust in God, and know that His plan is what's our destiny. But this doesn't take away all the feelings of fear and the emotions that come with living our life. So thank you to all who continue to pray and support our family in the many ways that you do. We love you.
Melissa

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