July 28, 2016

Things That Make Me Say Yeah: Healing with Plants

Part of my evolution in the way I think, eat and live has been to lean more on plants and their natural healing power.  Now, by my own admission, though I passionately believe in these principles of living, I have not been as steadfast in my daily living as I would have liked.  I made a conscious decision before I turned 30 that I was going to do better and be stronger because I know my body is going to go through a lot in the next 30 years and I want it to have the best fighting chance I can give it to be strong, healthy and carry my soul through a long vibrant life.  So June 14th I gave up processed sugars.  It's only been just over a month, but if you knew me on a daily basis you would know what a HUGE deal that is for me.  I spent my first 30 years keeping sugar farmers in business.  I had a very true and very serious sugar addiction.  Sugar addiction is real people.  Sugar was my drug of choice.  But I'll save that for another post about my struggle with my weight.  So I went one month completely processed sugar free.  I have also been trying to focus on fitting plants into my diet more than ever.  And while I am not a vegetarian by any means, I do believe that plants have the power to heal our bodies and so today's favorites focus on plants.  Hope you find one of these things useful/inspiring in your own life!

I gave this book to to my brother-in-law and his wife for Christmas and have been wanting a copy for myself.  I finally used some birthday money to nab a copy from Amazon.  This books warms my heart.  It's rustic and simple and vintage and nutrient rich all wrapped up in this beautiful little package.  I love it.

For a year now, I have been drinking a smoothie every day with few exceptions.  And while I love my golden flax and chia seeds, I love this protein even more.  I love that it is 100% from plants and organic.  It's good for my body and good for the earth.  I love the taste it adds to my smoothies and its easy to order right off of Amazon.

I might have added more to this post, but I have a distraction in my lap demanding my attention...

I know this is a horrible picture, but I love how it makes the bling in the back of his mouth shine :)

July 27, 2016

Medical Monday: Benign Tumors

So this Medical Monday is coming at you late because I've been struggling with hormone issues lately.  Long story short, I have had a severe hormone imbalance since the end of my last pregnancy last spring.  The doctor finally decided to put me on some hormones for about a week to try and balance things out and/or reset my system as they put it.  So I spent last week on hormones.  I can honestly say I have had a glimpse of menopause.  So anyhow, I am getting myself back together now, but I am just exhausted.

So we checked in with Clayton's oncologist last week to get the results from the MIBG we did this month as a follow up to the CT in June.  Based on all of the results, they feel that what they have been seeing on his liver are benign tumors.  They say they sometimes see these on children who have undergone radiation therapy to their abdomen.  At this point these tumors require no treatment and the doctors did not indicate any possibility they would become malignant.  They did say that sometimes these tumors can grow large enough to require resection.  So for now, we will be watching the tumors by moving our scans back up from every six months to every three months.  This is one of those situations where a couple years after his cancer treatment we are starting to see its late side effects.  Unfortunately, the doctors expect we will likely see other late side effects as well.

Still waiting to hear about his rescheduled kidney procedure...

July 13, 2016

Beachin' It 2016

Last year we took the first of what we decided would be an annual beach weekend.  The beach was actually what started our interest in getting a camper.  We were really wanting to go to the beach, but couldn't flake on medical bills to pay the astronomical price of staying at the beach, so enter our little camper.  Among our camper's many uses, it allows us an affordable way to treat Clayton to a beach weekend.  That kid LOVES the water.  Unfortunately when we went last year, the surf was too rough for him to play much on the gulf side, but this year was a different story.  Lucky for Clayton because the loves not just the water, but the surf.  Anyhow, here are some pics from our stay at our little spot in Perdido.

The view out our camper door.

I love this look I see on Clayton's face from time to time.

Spying the waves...

Getting ready...

And go!

And when Dad tries to get me out of the water...go limp.

And of course our girl waited for us to return after each visit to the beach.

While we enjoyed this place the last couple of years, I think next year we will move to a campground a couple hours further east.

July 11, 2016

Medical Monday: Getting Through Sedation

So I spent the last few days of my twenties doing the thing that has come to define my twenties...taking Clayton to the hospital.  It somehow seemed ironically appropriate.  Since the doctors weren't satisfied with the CT results from June, they had us do an MIBG scan last week.
One of the things that has changed with scans over the years is how we get Clayton sedated.  Last week was no different.  For years he had a Hickman or a port and so he was either already accessed or had a port to access directly and there was no need to "search" for a good vein.  Renal patients by the way are not the easiest sticks as I understand it.  Once the port was removed last year, we had to navigate new territory figuring out what worked best for Clayton and then the anesthesiologist and myself as the parent.
As a parent having someone stroll away with your child who is scared out of their wits (and always often screaming) is the most horrible thing...at least for me and George.  Once Clayton is asleep I am greeted with overwhelming relief, but getting to that point is not always easy.  And not all anesthesiologist abide by the same "rules".  Some prefer parents help, some refuse to allow it.  So as the parent you never know what you are going to get.  Only twice have I ever had to request a different anesthesiologist and it was the same guy both times and my mom was my witness this guy had issues.  Serious issues.
Hospitals also have different policies as well.  In Birmingham, they always carried him away awake without being accessed.  It was hell.  George and I had to sit and listen to Clayton screaming from behind closed doors.  It feels like such a betrayal from a parent to a child to send your child with strangers to poke and prod.  MSKCC and Sacred Heart tend to operate on the same wave link which is nice for us.  They are most concerned with making the child as comfortable as possible and if that means they have to step ever so slightly out of their comfort zone then they are OK with that.

What I have learned about sedation with children is this:

- Surgical procedures are the exception and you never get to go back there with your kid.  But they typically give them versed prior to going back so you are at least met with the idea that your child shouldn't remember the moment you sent them away with strangers.

- Don't be scared to ask.  You have the right to ask anything you want and that means special request to accommodate a child.  You might not get the answer you want, but don't let that stop you from asking.

-A lot of times hospitals and anesthesiologists, nurses, etc. have this notion in their head that they are somehow sparing the parents from seeing something done to their child.  Maybe you are the kind of parent that can't handle it without yelling stop, stop or something.  But if you are more concerned with easing your child's anxieties than shielding yourself and you know you can handle it, then make that clear to whomever needs to know.  Every time I hear, "If this is going to bother you you can leave," or "we do this for the parents," I can't help, but laugh.  All I can think is I have been through way worse.  Granted many people haven't, so they have to decide for themselves what they can handle.  My personal experience has shown my heart much prefers to stay and comfort my child as much as a can even though I know he will still be distressed.  No one can comfort a child like a parent.

- The first time Clayton was ever sedated with one of us, it was George. This was about a year before his cancer diagnosis.  Clayton was held by George as they gave him some propofol through an IV to sedate him for a scan.  I remember after, George said, "Thats horrible, I never want to do that again.  It felt like he died in my arms. "  Little did we know.
My best advice is let the doctors and nurses focus on what your child's body is doing and if you are holding your child hold them firmly because their body will go limp as the propofol hits their blood stream.  As the parent focus on the fact that you just eased your child's experience with this traumatic situation and they are now peacefully sleeping.  Clayton and I usually count to ease his anxiety.  Sometimes we throw in an ABC song. Whatever works and keeps him focused on me and not them.

Anyway, since having Clayton's port removed, things have changed and we have been trying to figure out what works best for him.  Back in March they took him back with the intent of giving him nitrous and then getting an IV.  This would have been the second time we had done it this way with us waiting in the waiting room.  He fussed a little this way, but it didn't last long because of the nitrous.  Well, this time, the anesthesiologist wasn't in the room yet and they decided to go ahead and try to access him.  Big mistake.  Huge.  I was outside the CT door listening to him scream like mad and even my mom in the room down he hall could hear him screaming.  She kept poking her head out of the door looking at me with a question mark on her face.  Since then, the nurses have made a point to bring me back every time, even for the nitrous part.  I didn't even have to ask, they just knew that was what was right for my kid.  I always held him as he was put to sleep when he had his port and hickman, so the only part of this that was new to me was the nitrous.
So last week, Clayton did even better than the time before.  He had tons of anxiety of course, but there was minimal screaming and I held him the whole time he got nitrous, while they got IV and all the way until he got the propofol.  We counted and sang; anything to get him through it.  Which he did and we found a rhythm that works for everyone when it comes to Clayton sedations.  Whoop, whoop!

We are waiting on the results of those scans and might not hear anything until next week.  Which isn't awful because if they don't call before then, then at least we know there isn't an emergency.  We are also still waiting to hear about the scheduling of his kidney procedure.  As luck would have it, his urology nurse is leaving Nemours and so in addition to the other complications we now have to work with a new nurse practitioner trying to get up to speed on all of her patients. So we wait, wait, wait.

July 9, 2016

July 6, 2016