Eli has had many interesting conversations with the various health care staff since this journey began. Whether he is instructing the nurses in proper port access procedure, texting riddles to his surgeon, teaching card tricks to the health tech, sending treats and notes to the lab, trying to stump the radiation oncologist, or giving feedback …
Eli finished another round of chemo earlier this evening. It is the second to last inpatient round before starting maintenance chemo, which is all outpatient. On one hand, I am feeling glad and relieved to be approaching that milestone in treatment and feeling grateful that things have gone so well. I didn't really know what …
The PET scan results came back and Eli is NED (no evidence of disease)! Yay! There are some abnormal results with all of the scans, but the abnormalities are all considered to be related to radiation, meds, surgery, or altered weight bearing post surgery. Eli's labwork from Thursday came back showing his counts are recovering. …
I clearly have difficulty posting news in a timely manner. Last post involved the long wait for Eli's MRI. I expected about 3 hours, but it took 3 1/2--poor kid! He had just managed to test ready for his chemo to begin when they took him back for the MRI and by the time he …
I am in a couple cancer related support groups on Facebook. One is for moms of kids with cancer, Momcology. The other is a group specific to Eli's type of cancer, Rhabdomyosarcoma. One common theme that comes up is something the parents in these groups call "scanxiety", the anxiety felt while waiting for the outcome …
Eli's wish to experience the gravity of the moon (and weightlessness) via a parabolic flight was approved. The approval was revealed through a fun scavenger hunt, thanks to #RediscoverDiscoveryPark in Pleasant Grove, Utah. The whole family had fun while Eli, dressed as Aang, gathered Avatar themed clues (air, earth, water, fire). See this Facebook post …
Eli is now an expert in taking Irinotecan. He didn't have to retake the first dose since it had been over 30 minutes from when he took it to when he first threw up. The rest of the doses last week stayed down. 😀 However, I am so tired of this particular med that I …
Eli opted for Irinotecan in cranberry juice. After consulting with the pharmacist, I prepared the supplies, but forgot put on gloves until I was in the middle of adding half of the syringe of medication into 30 ml (2 tablespoons) of the juice, but I pressed forward. While swirling the contents to try and mix …
Continue reading Crash and Burn (part 2) or Rising from the Ashes
I lost my superpowers last week. They just disappeared (Elizabeth! Did you take them?!?). This all resulted in a mom fail. Remember when I was on fire? Not so much anymore. This is bee sting med week. Eli has agreed to try mixing his med with something to mask the taste. We had previously tried …
Eli earned a pain bead today. In addition to physical therapy, the home health nurse came to draw blood. When she accessed his port, Eli told her that she put the needle in wrong (it didn't look quite right to me, either), so she tried again. I thought it looked good, but when she tried …
Eli The Boss 