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Friday, May 12, 2017

Beads of Courage--- Playing Catch-up

So, there is an AWESOME organization called Beads of Courage. This organization exists to provide beads to pediatric Hem/Onc patients so that they will have a tangible story of their journey/ fight through treatment.

SO MANY BEADS!!

I love what they have written up on the back of their Bead Journal sheets:
Just like the medical staff can use a prescription to request the medicine for your treatment, you can think of this Bead Journal as your Bead Prescription to request the beads you should receive. Your beads become a form of narrative medicine that will help make visible your story of strength and courage.
"Narrative medicine"... what a fabulous phrase! Each bead holds a story and experience. For example, WHITE beads represent chemotherapy. Dempsey has the most of this color. Other common ones for Demspey are BLUE for clinic visits and BLACK for pokes (or port accesses and injections).

You can see how awesome this is, right?

Us too... however, it was much easier to keep up with when we were in-patient and would see a BOC rep pretty regularly. Since we are blessed to not be in-patient anymore we have lost track of the beads Dempsey needs to flesh out his leukemia narrative. I have been combing over Dempsey's calendar of appointments trying to catch up from last September. *yeeesh*

The emotional part comes when I survey the amount of things Dempsey has had done to him and experiences he has been through. Looking back over April 2016 for example, in the catergory of infusions all 22 bubbles are filled in. Translation: he received at least one infusion of something for 22 days straight!

What is a HUGE answer to prayer is the fact that this is what his journey looks like today:

The Lord has been so merciful and gracious in answering my main prayer request: pray against negative side effects.

To this day, post Induction phase, Dempsey has not had any negative side effects. Well, he seems to be developing a slight tic with his blinking. This is common when someone has so many lumbar punctures. It is noticable to those that live with him but not really to those who don't. It doesn't bother him. It's not serious. He will most likely grow out of it after treatment ends- if not before. I don't like it. I have already changed some of his nutritional/ supplement/ oils regimen to help his nervous system relax in this area and heal itself. When you think about it, this is not a surprising occurence given the numerous times he's had a needle in his spine (where his nervous system's control center is). For the tic to be the only thing thus far... that is a very large praise!

Prayer requests:
pray against negative side effects
pray for peace
pray for courage
pray for strength
pray for laughter to continue
pray for wisdom and open minds for the doctors
pray that we don't waste a moment of this journey
pray for continued growth and development of Dempsey's body
pray protection over every organ in Dempsey's body
pray for our support network- we need it for 800+ more days
pray for our finances
pray for our marriage
pray for the hearts of the boys
pray that God will provide a close community for us to grow with who understands, values, and respects the journey that we're on
pray that Dempsey will be able to build friendships with kids his age at school this upcoming year
pray over our schooling
pray as the Holy Spirit leads you