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 is because neuroblastoma puts off a hormone that the isotope makes light up when the MIBG camera is used.
We arrived at 11am to have the line inserted. Jesse’s clinic nurse did excellent as always. And Jesse only screamed as the line was going in, and then moved on to being excited about the pink and purple wrap that was put around it to protect the line.
She and I went down to the cafeteria, where she had fried shrimp for the first time. I figure if she is going to have an allergic reaction to it, what better place to try it. She loved the shrimp, and pitched a fit when I sampled one…
Afterwards we went over to Nuke Med, had the isotope injected through the IV, and headed home.
Jesse was so excited about going back today… that it was well after 11pm before she went to sleep.
This morning we headed out at 7:15am. We dropped Christine off with our neighbor, who we really appreciate… especially since she ended up keeping Chris 11 hours today.
After that we were off to Day Surgery at CHKD to check in and wait for 11am. Due to having to be put to sleep, Jesse couldn’t have anything to eat or drink. She is so used to this that she never asked to eat. She played and amused herself until it was time to ride the stretcher down to Nuke Med.
It amazes me every time we go and friends at CHKD know we are there, they take the time to stop in and say hello. It really means a lot. 🙂
Mike was able to go with us this time, and he held Jesse until she fell asleep (she insisted on sitting up, cross legged until her eyes started popping from the ketamine). It is always so hard for him to see her have to be put to sleep, but he does a great job of not letting her see him cry.
We left Jesse to have her scans and wait for her to awake in PACU. By 1:30pm, I was getting nervous because we hadn’t heard anything. At almost 2pm, we were finally called back to PACU. Jesse was slowly waking up, but then again she got a lot of ketamine and propofol… and I figured it might be a long wake up when the anesthesiologist commented on how long it took her to fall asleep… and that she was used to the drugs.
By 2:30pm, we headed out and down to see her oncologist. Jesse was awake, and her speech was a little less slurred, but she was in no means able to walk by herself. The best way to describe it is watching someone who has had way too much to drink… and I mean way.
We met with her doctor, who told us her scans unofficially showed no changes (he did mention that the MIBG showed less uptake, which is a good thing… but the radiologist needs to read it). Her CT scan showed no change either.
He is very pleased with how well Jesse looks and her weight gain (finally over 31 pounds!!). He discontinued her bactrium and cyproheptadine (peractin generic to increase appetite). We are so excited that Jesse won’t have to take those medicines anymore, but scared too because the bactrium is to protect her kidney that is still enlarged. Her doctor did ask we make an appointment with the nephrologist, which is my fault. I thought they would call me. The oncology department spoils me with calling to give appointment times.
Jesse also “graduated” from her clinic nurse today. I am actually very bummed about this. She has been so good to us. The good news is she will put Jesse’s IVs in when we have scans, and we can still visit her. But for Jesse this graduation is great because she is healthy at 6 months off treatment.
She also can start getting re-immunized, and we can set that up with her pediatrician here in Williamsburg. I know that I am excited, but I don’t think that Jesse will be when the time comes 🙁
After we left clinic, we headed for home. I made the mistake of giving Jesse a pen… She proceeded to draw her “bones” on her legs. Then we messed up and gave her gum, which she proceeded to wrap around her feet. I was a little frustrated by this point, but Mike pointed out that she might not be quite with it yet.
And due to the nap she took in PACU, she stayed awake till 11:30pm. I need to find her a night job…
I am a good friend of Cynthia Adcock. I have been able to keep up with Jesse through her. I pray for Jesse and your family as well as I do my own. She is such a trooper and a fighter. It is great to read todays blog and see how well she is doing. May God keep you and yours in his sight.
Love, Elaine