Parents, The Struggle is Real

Uniforms, shoes, folders, binders, paper, tissues, pencils, green pens.

Green pens, really??

That doesn’t even begin to cover half of my list.

54D93911-EDEF-4C56-9D7F-8599C2C0722EWhat happens to moms if you just DON’T GO back-to-school shopping?

I may start a revolution.

Until then, grace be with your iced latte and battle-weary self in the war-torn school aisles of Walmart.

 

 

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Day 935

Justin is pooped after physical therapy.

247C253F-84D4-4A2C-A2EE-B8A7DA0D7F70Nicky gets his own special movie night with us. Finding this individual time with the boys isn’t easy, but so important as our family continues to journey with pediatric cancer.

AE042A29-CF7C-4B5E-B53D-C692BC4ADE54And me? I got my nails done. Thank you for ongoing support and prayers.

Be strong and take heart and wait for the Lord. Psalm 27:14

Day 932

Justin is wiped out today. He’s tired, cranky and in pain, the works. Think we are pretty much couch-bound for the day.

But yesterday, he had lots of fun playing “squash the lemon” with his bro and their cousins. Michael is a tough little lemon.

Cancer Mom Confession

What do cancer moms really think when we are judged? Please. We are too busy with real problems. We don’t give a crap.

With her permission, I have shared an unedited conversation between myself and Ruth McCrea, a friend in Canada. I have never met Ruth, but I know her very well because she is also a cancer mom.

And a dang good one, too. This is a mom, who, in an unbelievably selfless act of solidarity, shaved her long, lovely hair when her beautiful baby girl lost hers to chemo.

Ruth posted the following comment on Twitter, and the rest is our subsequent conversation:

I ate very well and took care of myself. I ran and did yoga daily while pregnant, had unmedicated/natural childbirth, breastfed exclusively, fed her organic food, etc. At 2 she was diagnosed with cancer and has relapsed 3 times. Tomorrow I’m eating Blizzards. Life’s too short!

Me: Hi friend, hope you don’t mind the DM. Am wondering if I may quote you on my blog. Your last tweet about doing everything right while pregnant, breastfeeding etc., and life being too short. I love that. And I think sometimes people judge us who have children with cancer. Like we just fed them processed crap all day or something. I didn’t do everything “right” when I was pregnant and didn’t buy only organic. But I did the best I could. Anyway, I’d love to put your quote out there to my readers. Of course, I would give you credit by name. If you’d rather I don’t, though, I completely understand. Hope Mini continues to be the boss over the devil from hell, which is pediatric cancer. Lots of love from one cancer mom to another.

Ruth: Please do!

…and yes, of course they do. I try not to be too jaded about it and just move on. If anything it’s helped me round-out as a person. I had never even shopped at Walmart before (I know) and was almost embarrassed to buy a non-organic vegetable.

Now I occasionally say, “Do you guys want McDonalds for dinner?” …and I don’t even feel bad about it!

This meme is super powerful too I think! In a funny way…

Or Tweet I guess it is. Multiple close-friends have sent it to me.

D10D1E25-4A93-4704-9C9E-6CE6CD72B9B9

I was Cynthia pre-cancer.

Me: Lol! So funny. I love your disposition. Thanks for letting me share and keep keeping it real mama.

Ruth: 💛 Night-night

 

Day 928 – Update, Photos and Tips from a Cancer Mom who is Maybe Starting to Catch On a Bit

Justin started another cycle of chemotherapy today. His physical exam went well, and his blood counts are very good.

He is doing well. He is doing really well. God, we are so grateful for your healing.

To my cancer parent friends:

•If your child has difficult veins like Justin, ask for – no, demand – Ativan (or an equal sedative) be given before IV placements. I started insisting on it since our last hospital stay and it has made a huge difference in the amount of suffering Justin endures each time.

You may have to make some noise, though. I asked earlier in his treatment to no avail. But as IV placements became more and more torturous, I wouldn’t take no for an answer.

The mild sedative relaxes Justin’s mind and body, so the vein is much less likely to clench up and “hide” or “refuse” to give blood. I’ve learned that, for Justin, fear and stress equal no IV placement and zero blood return.

They don’t want kids depending on these types of drugs, and I get that. But these are special circumstances. Don’t be afraid to get a little confrontational as your child’s main advocate!

•We still use “Buzzy” to help with the pain as well. Ask your nurse or child life specialist about this. If they don’t have one, Buzzy can be purchased on Amazon for about forty bucks and is money well spent.

•I was reminded, by Justin, today of another thing we used to do for port adhesive removal. You know, that super sticky plastic patch they put over the access needle which hurts like hell fire when pulled off? The orange waxy wipes they give you did not work for us. But good old-fashioned baby oil did! I applied it, generously, over the adhesive with a cotton ball and let it soak in for a few minutes. Glop it on real good for easier, less painful adhesive removal.

Well I hope this reaches the screen of someone who could use the help and encouragement. It’s a long, ugly road. And I was a clueless mess at the beginning. I’m still a mess most of the time, but like to think I’ve, at least, learned a thing or two.

Oh and I can tell you this, too. If possible, let your child bring a friend to chemotherapy treatments. Play games and act ridiculous. Kids love that kinda thing and it makes it all so much more bearable. Even fun.

And if YOU can bear it, getting them a pet really does help, too, this cancer mom reluctantly admits. I’m not a pet person per se, but I have seen the benefits to all my boys.

Okay I’m rambling and feel the need for a list. My cancer mom tips:

1. Request a sedative for difficult IV placements and blood draws.

2. Ask your nurse, phlebotomist or child life specialist to use Buzzy or purchase one yourself.

3. Use baby oil for adhesive removal – bandaids, tape, port patches, heart leads, etc.  

4. Bring a friend to chemotherapy treatments. Play games and be funny. 

5. Get your cancer kid a pet. 

6. Take care of your own health! Stress will literally eat you alive if you don’t rest, take breaks, eat right. I used to laugh at this when our social worker brought it up. But stress is a killer, and who will take care of your child if you are dead? 

7. Lots and lots of prayer. God loves you and your child. He really, really does. (Zephaniah 3:17) 

 

 

 

White Water Rafting

Today we rafted down the Lehigh River. I couldn’t bring my phone on the raft for pictures, but here’s an idea of what it looked like:

We went for ice cream afterward in the quaint little town of Jim Thorpe:

And, amazing to us Jersey suburbanites, we saw deer and baby fawns on the side of the road in Arrowhead Community where we are staying: