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Saturday, March 18, 2017

I've Been Quiet

Hello Team Dempsey fans.

I know, I've been quiet for 11 days. I guess I just don't know what to say, what to share, what to ask for, etc.

Yesterday (Friday) Dempsey and I went BACK to CHOC clinic for another lab draw. It was supposed to be a draw for the "thiopurine metabolite" test. However, when our nurse, sweet Lindsay, came in with the tray I happened to mention the special vial. She looked puzzled. She checked and rechecked the orders. Guess what, there was NO TEST ORDERED. What the hell? I'm already so livid with our ONC and she didn't even manage to put the order in the system. So he had enough blood drawn for a regular lab- which he had just had drawn THREE DAYS previously- and this thiopurine madness. I'm serious, my eyeballs are gonna get permanently stuck looking at the back of their sockets by this journey's end.

I think it was divine leading, me taking Dempsey. Jake was all set to take him but tears just about fell when I told him Daddy was going to take him, even though he wanted me to go. So, I quickly got dressed while Jake finished prepping his port area and got him dressed. Then off we went. I don't know why I mentioned the thiopurine test... I couldn't have told you a vial was missing. But I'm grateful God is working in this mess because HE made sure our trip wasn't wasted and that Dempsey wouldn't have a needless poke so soon.
I'm not saying Jake wouldn't have done the same... only saying that it felt like God was in it.

Run down-
Jake and I were in Escondido Monday through Thursday.
The boys stayed with my folks.
Granddad took Dempsey to his Tuesday lab draw.
Tuesday aftenoon our ONC called and left a message asking me to call her back and discuss Dempsey's liver enzymes- they were still high.

Lets start back up right there, with his ONC... HIS LIVER ENZYMES ARE STILL HIGH. Granted, they are lower than 1,000 but still in the 700s. She would like me to send her a list of all the supplements and essential oils we're using. I'm not sure I want to share that information. Why?

  1. Nothing has changed in 11 months of treatment.
  2. She wouldn't understand what I did share with her (admittedly she would involve another ONC on the "team")
  3. It's not the natural stuff that's the problem... it's the natural stuff that has made his journey exceptional thus far.
  4. I don't want to open myself up that way because there is no telling what drs will do with that information. Plus, it's out there for the world... so... if they want it they can find it themselves- much like I'm having to do with all my research to PROTECT MY SON.
I could go on and on... but I don't want to.

On a more positive note, we are SUPER grateful for you continued prayers and support. The generous gifts keep flowing in, slower but still just as we need. God is so good. My biggest fear is still that y'all will stop praying and we still have 870 days until EOT (end of treatment). That's a long time, friends!

I posted this the night Jake and I came home from our much-needed getaway.

Marriage: where 1 + 1 = 4 (or however many offspring you are blessed with- bio or not ❤)

My lover and I just got back from a getaway. We were blessed by friends for the accommodations, my parents for willingly keeping our angels, an ex-military man turned part-time server with some wonderful conversation about tattoos & leukemia, the SDWAP for giraffe feeding (see previous posts), a Canadian oncologist who held my arm & told me "your son is going to be just fine" as he stared into my eyes, and a complete stranger who paid for our coffee at a café because we "looked a little lost".

So, when you've missed your monsters you celebrate your reunion with froyo and have a short, delightful chat with a friend you run into in the parking lot as he fetches his wife some VIP postachio froyo w/ yogurt chips.

Praising God. Good night.


Here is a peek into how Dempsey communicates-

Please continue to share Dempsey's story with anyone and everyone. You just never know who needs to hear about it and perhaps implement some of what we do to their own cancer journey. We hope that we can always be salt & light to this world while we are on this journey God allowed us to travel. We love you. We need you. We appreciate you. May God bless you, each, so deeply that your heart cannot contain the joy.

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