Miscommunication and misunderstanding……

Yesterday was another tough day.

We had our monthly chemo appointment in at Children’s on Monday and we got talking with our nurse about the what we “thought” was in the wings for Geli as far as knee replacements and surgery and time lines and the more we talked, the more it seemed like something just wasn’t right…..or that something was missing.

Long story short….what we thought was in the works for Geli regarding her knees and surgery and stuff….well, the reality is way no where close to what we had thought we understood.

There is a whole bunch of information that we don’t know and we are going in this coming up Wednesday for a meeting with our oncologist, our nurse clinician Jon, I and Geli.

It’s so frustrating. Geli has been in pain everyday all the time for a long time now. It’s wearing on her. It’s horrible for us to see her in pain.

I fell apart yesterday. Couldn’t stop crying. Don’t really have the energy to get into it all right now, but the bottom line…..something has to change.

We are praying like never before….for a miracle, for answers, for something.

Could you pray for us? We are beyond exhausted. Every blow feels like a HUGE hit and we are finding it harder and harder to cope with the blows and ever more difficult to recover from them.

I’d love to be able to explain a bit more, but I just don’t have it in me.

Pray for Geli
Pray for Jon and I
Pray for the kids


Author: Patricia Culley

I'm the ringmaster of my own circus. Just trying to stay one step ahead of the monkeys.

6 thoughts on “Miscommunication and misunderstanding……”

  1. As always my prayers are with you. Even the short amount of time we were in the hospital exhausted us entirely. I send restful thoughts and hopes for clearer communication. Hugs.

  2. i am praying for you and your family. Do they have support group for parents in your situation? It helped me alot going to support group who were going through the same thing i was, words cannot fully describe what it is like but they know the feelings and emotions and exhaustion.

  3. Continuing to pray for you all, for stength, for rest, for healing with Geli’s bones, for no pain….we will continue to uphold your whole family in our prayers – always. Thank you for sharing. I am SO glad your family got away – for a change of scenery, a different place to be together, the beautiful water and being able to explore and enjoy God’s creation – and to just be together in a different space and place, for even a short time. Patti – please let me know if there is something I can do for you – bring you a meal, help you around your house, fold laundry – anything you can think of that I can do to ease your load, I am happy to help you out – honestly, please just ask.

  4. Dear Patti I thought it was to-day you were going in to see the oncoligist, we are holding you all in our hearts and our prayers many times thru the day and sometimes at night. It was between 3:30 and 4 A.M. before I got to sleep last night. Hope I will do better tonight as I have a 9:a.m. appointment with Dr. Rose my surgeon. My knee is coming along very well .Had a 116% bend on it at my last physio.It is a little sore to-night but I can’t complain ,it just reminds me to pray even more for Geli. Much love to you all and strength and rest for you too. Much love Grandma

  5. Thinking of you Geli. I just got home from dragon boat practice, all of my team mates and l went through cancer. Wish you could come along for a ride in the dragon boat and enjoy the scenery. Each practice i go i will be thinking of you Geli. I am praying for you.

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