ChloeWatts.com

10/3/2011 by Dana

October 3rd, 2011 Posted in Daily News Post

Ah….time flies even when not having fun. Summer is over. It was a working one, as well as one of loss. (miss you my dear aunts) And it was one of hope that was dashed…or changed for another time, regarding Chloe’s biggest wish, to swallow food.

Chloe’s second botox surgery to help her swallow occurred on Aug 11. Chloe said, “it worked the first few hours.” She could swallow and didn’t need the suction machine for several hours. She gives credit to the dilation procedure during surgery. Since then, we just aren’t seeing evidence, and she is not feeling any swallowing success.

Her insurance has changed and this makes for some transition… which is a nice term for stall. Kaiser, her new insurance, is for healthy people. I guess that’s about all I will say about that. I have Kaiser, but for Chloe it means losing her primary doctor Dr. Tomkoria. She is the one who led us to the discovery of the tumor. We hope to return to you in the future. She was our quarterback and contacted the ‘team’ in all manners. She and Chloe relate in a personal way.

On Sept 7, another MRI of Chloe’s brain was conducted at Legacy hospital. This time without full anesthesia. Chloe had a rough reaction to anesthesia a few months back. Too much anesthesia was given and she lost two days of a regular life. (oh, I must use that term lightly) This was Chloe’s choice. When that day came, Rick, the MRI tech, was having a bad day and made it his business to push his agenda on us. He was running behind and was not patient friendly in the least. At that point, a doctor came over to tell us a baby from upstairs was in trouble, needing our MRI time, and asked if that was ok for us to be bumped. We, of course, said yes! This would give Chloe more time to have an IV placed. The daymare went on…

Rick did not want to call a special IV nurse we had requested for Chloe. Her veins need a specialist. Rick tried to slip a regular nurse our way who had her own idea on how to place an IV. Chloe has had enough pain to endure 10 lifetimes, which is why we set up, well in advance, to have the special nurse.

What did me in was seeing Chloe’s face turn white while biting her lip. She began to accept her fate, follow their directions and then something happened within me. I stopped it! I stopped them all. Some force bigger than my 5′ 2” frame came forth and demanded we would be leaving with no preamble if an IV nurse was not called. (They are so specially trained). There is a special numbing cream they were to use and we were told it would take 45 minutes, and later told 30 minutes, for it to work. I knew the truth. I set it up and that’s what we were having. End of story.

Chloe and I were sent back into the waiting room with our scrubs on for 1/2 hour. Then an IV nurse arrived. Rick was still difficult throughout Chloe’s MRI. Afterwards he picked a fight with me inside the MRI area, raising his voice and pointing his finger at me. I ended the discussion with, “You can try and talk you’re way out of this, but the truth is we’ve not had a good experience here today”. All this time he was taking the IV out of Chloe’s arm, paying no attention to what he was doing. He was reported.

A writer writes what they know. This is my experience and it’s why I often do not write. It’s long and pain-wretched. This is not an easy story to read. I would not want you to live it, nor to witness it.

There were 2 long days of waiting before the results of her MRI scan. That Friday we were ushered into a room…but not just any room. Chloe reacted immediately and said her thoughts aloud. “This was the same room we were given the bad news in when that tumor grew back in 2009.” We waited 45 minutes…..finally…a doctor we didn’t know came in and somberly began asking Chloe all sorts of questions. We were not breathing. I purposely did not sit in the same chair as the visit in 2009, even though it left a space between Ron and me. Ron kept the mood light before the doctor arrived. Finally the doctor said, ‘Oh, and your scans were good. No new growth.’ Geez………………………say it first already please!!!!:) 🙂

That news left us on a high and a new wave towards Chloe’s goal, to swallow. Her speech/swallow therapist is working diligently on new ideas to get that muscle to wake up and to strengthen it.

Chloe has begun 7th grade and is handling the schedule pretty well. A new lovely language is making itself a new friend in her life, French. She’s excited about learning French, and this excitement is a first in quite a while. She is having friends over sometimes for homework time and doing some shopping time as her physical energy/strength improve.

Her nights are still beyond words. She dreads going to sleep. Ask her.
Personally, I look back at my journal and see how far she has traveled. But Miss Chloe runs weary of hearing this. It actually annoys her. Perhaps this is her time to be heard. Wanting to, at least, be able to swallow her own spit and lose that machine at school. This would be something we can’t even begin to relate to. Eating and swallowing would satisfy a need so basic and human that it’s a matter of survival, not just enjoyment. Socially…being able to swallow and eat will include her ‘EVERYTHING’ again. Just consider a birthday party without anything to eat? A holiday without food? If you could not eat, would it not be torture to attend any functions?

This is why I don’t write the blog. Raw. Way to raw.

Colin, our light in shining armor is doing very well. Learning to drive, working some, applying for new jobs, spending time with friends, as well as a special one, and preparing to be an outdoor school counselor, as well as taking the PSAT test soon…whew. He’s busy. I noticed it’s been a year since he and I went out to dinner alone. Way to long.

Ivey seems to be bouncing back amazingly from her Cancer bout over the summer. We did not pursue Chemo for her. It just wasn’t in the cards. We hope for her best and she reminded me today, running the cement steps at the school, that all is well. Ivey….you are the best dog-person there is.

Currently a job search is still in full force for me. There are some leads out there and I’m pursuing inside, as well as outside, my experiences. No words can convey how taxing this has been within this circumstance. There is an elephant who parks on me now and the weight is so incredible ….no one should know this. Somehow though, you know this…if you are human and still breathing. I suspect you’ve had elephants of you’re own. I’m just grateful for Ron, who keeps me calm and sane during an insane time. You are Good to us all and help make sense out of this. You keep the dream a picture, not just a sketch.

Till next time….

Take care, all of you. The world needs you well.
Dana