Time Between Course 4 and 5

Withdrawal from the meds for round 4 was a bit better. It didn’t seem to last as long and he got his appetite and energy back fast.

So we made good use of the energy!

We went to our first rodeo and Simon loved it! This was courtesy of the Mascot Miracle Foundation.

The next week we went to the Hogle Zoo after hours courtesy of the Mascot Miracle Foundation again. That was amazing! The dinner was provided by the local Chick-fil-A’s which was fun because we have friends that own and manage a couple of the locations. So we got to catch up with them.
Then the animals were much more alert due to it being cooler (75 degrees!). One of the lioness’s even saw Meg and ran over to her and wanted to “play.”

We’ve done some bike rides, played t-ball, soccer, gone to our family ranch, played on playgrounds, walked to the kindergarten doors a few times so he knows where it is, and just trying to fill our time with fun.

We made chocolate chip cookies, an ultimate fort, and Simon has learned to love board games. When he won LIFE and became a millionaire he told me “don’t worry mama, you can visit me in my lobby.”

We

are currently on day 3 of 5 for immunotherapy/anitbody (ch 14.18) for round 5.
That means we are two days away from our last day inpatient (prayerfully/hopefully) ever again!

Simon had his central line (double lumen/hickman) placed on June 28th, 2017 when he had his resection (tumor removal) surgery. He is having it removed June 15th, 2018. Almost one year of having a central line (he had a single port before).

Because of the time the line has been in his body they are worried about the line coming out smoothly. Normally this is done in their room but their concern is that he has never had problems- so it could have fibrous material attached to it. So just in case they are going to remove it in the OR. We had scheduled his “ringing the bell” at 3pm but may have to move that depending on when the surgery is.

But Simon is SO excited to get his line out.
When he says his prayers at night he usually says a quick one.
But the other night he said he was thankful to get his line out so he can go swimming, take baths, and go to the beach in a few weeks 🙂 Silly boy.

Currently we are sitting in his room playing classic Sonic the Hedgehog Games. I will try to film him cause he gets so into the games with chatting during it and sound effects.

I

t’s been a fun week taking pictures with nurses, saying goodbye to some people, and being able to go out and about with no restrictions. It’s also been relatively “quiet” in the unit meaning not many rooms are full. I love looking at the board and seeing it less than half full!

Meg came up yesterday and we took her to get her labs done- they still look fantastic. Her medicine is doing exactly what it needs to and you would never know she has anything wrong with her.

Life

feels pretty…. good right now. It’s weird to say that. We will never have our normal back again but we really appreciate all the amazing blessings, miracles, and friends and family that we never could have before.

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