Author Archives: admin

Today was the retry of Jesse’s 6 month scans. Yesterday she and I traveled to CHKD to have the IV line inserted in her hand and the MIBG radioactive isotope put in her body. The isotope takes some time to really get into the tumor as they want. The reason we do the MIBG isotope […]

This week is Jesse’s scan time. I delayed making any mention of it because my brother is taking his huge pharmaceutical boards on the same day as Jesse’s scans, and I didn’t want him to be thinking about Jesse when he needs to concentrate on his test. But due to a strange fluke, her scans […]

Yes I have been delinquent in posting. I have been super busy with work and the family. On Friday, Jesse and Chris got a special treat to go camping with friends overnight. Mike and I joined them for dinner, swimming, and dancing. Mike and I didn’t really think that Jesse would stay when we left. […]

Hi everyone! We haven’t been up to much lately. Actually we have been boring 🙂 On Sunday, I woke Jesse up for church at 7:45am. Then we went to breakfast, then swimming, and then to a picnic. Child never took a nap. Her sister had to have one, and was still tired at the picnic.  […]

What a crazy few weeks we have had! In April, Ferfer called a friend in the Colonial Road Runners. They had an opening for a 5k Grand Prix race and need directors. She and I became co-directors with less than a month to pull the race together. We did it with a lot of help […]

Today Jesse and I meet with the nephrologist at CHKD. I had psyched myself out for a visit on par with urology. Luck for me I was wrong :). And as Mike just said, “It shows the importance of getting a second opinion when your gut is giving you a bad feeling.” We arrived at […]

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 […]

The scaniexty is starting to really set in. Tomorrow Jesse and I will go for her audiology test. Cisplatin, a chemo drug she had  during treatment, can cause hearing loss. We have been lucky so far even with her being diagnosed  last week with another ear infection. Thursday is the big day.  MIBG scan to […]

This past week with Jesse has been an up and down roller coaster. By Wednesday, we had not had a successful number 2 since Friday. This was making her dad and I very nervous.  One of Jesse’s symptoms prior to diagnosis was constipation. I had been giving her Miralax since Sunday, and having not gone […]

The more Mike and I talked about the urologist and how my meeting with her went, the more uncomfortable I was with all of it. Every 10 to 12 weeks under anesthesia to remove and replace the stent made me very nervous. I decided to call her oncologist to see what his opinion is. He […]