The last 3 days have been a whirlwind of road trips, anxiety, and lack of sleep. It’s affected us all. Poor Chris feel asleep class today, and told us she had to go see the nurse.
Wednesday began with a tip to the ENT for an audiogram. This is the first time the audiologist has ever met Jesse awake. First she put tubes in Jesse’s ears to allow her to take pictures of her ear insides ( probably a better way to write that, but well I am tired and my brain is foggy). Right side looked great, but the left failed. Then she hooked Jesse up to earphones and went into another room. She could send beeps through the earphones. When Jesse heard the beep she was to throw a golf ball in a tub. This game lasted 5 minutes, and Jesse was bored.
So we switched building towers. That lasted 3 minutes.
Her assessment is that Jesse’s ear might have failed because of the ear infection she had last week, and the ball of wax that is still there. We go see our primary physician next Wednesday, and if has to remove the wax…. It’ll be a fun trip.
She wants to test Jesse again on May 18th to make sure it was just the ear infection and wax causing trouble.
After we left the audiologist, we went to clinic to have a line placed in Jesse’s hand. This way she would only be poked 1 time during our 3 day visit. Jesse had a blast running around clinic playing a boy and girl, who were there for treatment.
Then we headed downstairs to Nuclear Medicine to have the MIBG radio tracer put in Jesse. That took 2 minutes, and we were out the door.
Thursday morning, I got Chris on the bus. Right afterwards Jesse had a meltdown that it was time to go. It wasn’t because her scan wasn’t until 2pm. And due to having anesthesia she wasn’t allowed to eat after midnight.
Around 10:30 we headed off to CHKD. We arrived at day surgery and got her checked in. At 2pm, we went downstairs to nuke med, and they began the MIBG.
I returned upstairs to wait for Jesse. By 4pm, they hadn’t gotten me to come back, and I was getting a little nervous. Shortly after that they did. Jesse was in PACU screaming. Part of the screaming was waking up from the drug, and the other was due to being catheterized for the MIBG.
We calmed her down, and gave her some Tylenol. The nurse asked me if we were going to have any of the tumor removed because of the size. I told her no, we weren’t and explained that we couldn’t due to the radiation and location. It’s fine she asked. I am sure she doesn’t often see the scans, and she was concerned. I love the nurse in PACU. They have all been very good to Jesse.
By 4:30 we were out the door and sitting in traffic. Ci la vie, it’s Hampton Roads.
This morning we headed to clinic. Since Jesse already had her blood work on Wednesday, no pokes 🙂 we did get her weight: 13.2 kg or 29.1 lbs! Our doctor said it wasn’t enough. Oh well at least she is gaining.
Our nurse told us the scans were stable, and our doctor told us that too. He also told us that her kidney looked the same. And he has sent the new scans to St Jude’s. I asked him about seeing a nephrologist. This came to mind when I had a conversation with another cancer mom yesterday.
Our doctor agreed, and will talk with the nephrologist. He also is going to talk with a neurosurgeon. Jesse has a few vertebra that aren’t getting the correct blood supply. This could mean scoliosis in the future or lack of growth in those vertebra. We knew this was possible because of radiation hitting the spine.
He did say that he doesn’t know if the neurosurgeon will want to see us soon or in 6 months. Time will tell.
So right now we have another 3 month reprieve from being a cancer patient. But I am not sure at this point what our plans are for the kidney or spine.
——-
Help us raise money for research! Come out and walk or run on May 12, 2012 to conquer childhood cancer! Jessegracesjourney.com/5k
5k is 3.1 miles. And exercise is a great way to help your body stay well!
You all are in my prayers daily! Keep fighting the fight! Jesse looks GREAT in her pics…so happy she’s gaining :}
Thank you! How’s Meggie? I thought about her on Wednesday when Jesse was running around clinic!
I do think your daughter will be able to hear those birds after all. She has some good high frequency hearing in the Left ear. I think you’ll notice a significant difference once she adjusts to her new hearing aids : ) I know at my house (I live in the woods) birds are louder than they appear on the familiar sounds audiogram.
Reference: http://www.hiddenhearing.ie/reading-the-audiogram