Thomas's third cycle of chemotherapy involved three days at the infusion center and ended with his biggest yet allergic response to something mysterious. We have ruled out our two suspects (chlorohexadine and dexamethasone) and now the plot thickens as we try to figure out the culprit.
On Day #2, the nurse gave Thomas Benadryl prophylactically as an anti-emetic and he went on to have no histamine response during the chemotherapy infusion. At that point, we continued to think the problem was either chlorohexadine or dexamethasone, neither of which he was given that day.
On Day #3, Thomas was given no pre-meds at all (having received Zofran at home), not even Benadryl, and he was to have his biggest reaction yet. Fifteen minutes into his chemotherapy infusion, he needed to use the restroom, so we walked the ten feet to the rest room, Thomas pulling along his IV pole. Along the few steps, he sneezed twice, his first sneezes of that day. Seated on the toilet, he sneezed three more times, which I was counting. Then I noticed him scratching one thigh, so I looked closely and spotted the first hive, a clear pustule that had popped up. I looked to the left and saw a hive on the other thigh.
I looked up and saw Thomas's cheeks and one ear flushed bright red and a single hive on his bald head.
"Mama, why does my voice sound funny?"
I informed him that we had to leave the bathroom and find the nurse NOW.
Thomas was sneezing continuously now and, as I took him off the toilet, I saw his bottom was covered in hives. I went to wash his hands (probably a stupid delay of mine, but habits die hard) and I saw his arms were now covered in maybe 20 hives.
We exited the bathroom, took two steps to the nurse's station, called for help, took three more steps to our cubicle, and by then ten medical staff, including the doctor covering the infusion center, surrounded us with their trays, carts, and emergency supplies. Within two minutes of Thomas's first sneeze, he was covered in probably 100 hives. His blood pressure was also skyrocketing: the number I don't precisely remember, but something like 140 over 100--both numbers easily 20 points higher than one hour earlier.
They gave Thomas the Big Daddy Dose of Benadryl (four times his normal dose) and then the ten staff stood around him for fifteen minutes, all staring intently at every hive, every flush of skin.
Sparing the incredibly lengthy, detailed medical talk from this blog--but yes, I wrote out every single thing and emailed numerous pages to the head oncologist--the doc on the floor thinks the culprit is an additive to the bags of chemotherapy.
What happens on a patient's chemo day is that the patient shows up and has blood work done. If the patient's numbers indicate he is strong enough to receive chemo, the oncologist orders from the hospital pharmacy the chemotherapy for the day. The pharmacist mixes into a bag saline, the right dose of the right chemotherapy drug, and, I am told, some additives, like preservatives. The bag is sent up to the infusion room--where the patient has been hanging out, receiving pre-meds, and passing time--and chemotherapy begins.
The doctor is going to be speaking to the hospital pharmacist about what anything else is that goes into the bag.
Another possibility Chris and I are reading about is being allergic to entire classes of chemotherapy drugs and requiring a desensitization process (big article here).
Meanwhile, the grand plan is that Thomas will always receive Benadryl prophylactically and receive chemotherapy at a half speed (if it is supposed to run over one hour, it will be set to run over two; if over two hours, set to four hours).
Of course, this is deeply unsettling to Chris and me. We cannot skip chemotherapy for an inoperable Stage 3 neuroblastoma like we could skip peanuts or papaya. What will be the effect of repeated exposure to a serious allergen? Will Benadryl be a simple and easy answer? Or will he at some point have anaphylaxis?
The medical team yesterday did say to us, "You're not crazy. Thomas is having a severe reaction. This is weird. We are going to figure it out."
So, readers, please pray about all of the above.
Some photos from Tuesday and Wednesday:
Thomas was on the steroid dexamethasone for its anti-emetic properties on Monday, and it does, apparently, cause the typical 'roid rage (I asked!). Poor buddy screamed for an hour on Tuesday morning about wanting to ride his bicycle (forbidden by the oncologist) until he fell asleep clinging to his Daddy. However, I am so thankful because Tom has to take that medication only a few days a month, whereas I was informed that children with leukemia take it for 28 days and the nurse said, "their personalities can become almost unrecognizable."
In the face of increasing suffering of an innocent child to hear a Christian quote holy scripture that God is mysterious and "His ways are not our ways" often arouses irritation, anger, rejection or more.
ReplyDeleteYet, for the practicing Christian we must often return to this tenant of our Faith.
Today, August 21, is the historical appearing of Our Lady of Knock, in Ireland, 1879, where she appeared to over 16 witnesses for over three hours under the gable of the parish church. She stood beside an altar, her face raised toward heaven. She uttered not a word.
Many Catholics hold her as the greatest example of Christian fidelity. She is our model. In the face of unparalleled challenge, hardship, and grief, her Faith in God never wavered.
This day, one ignorant, weak, non-comprehending Catholic will go to Mass and stand beside the altar of mercy in imitation of this beloved mother and model and offer supplications for Thomas and his family members.
Without a word spoken -- for God reads the heart ...perfectly.
Anon