I am writing this post to primarily organize my own brain and also express what a typical treatment day consists of along w the medicine cabinet days in the Carper household.
During the Induction Phase (August 2-September 6 35 days total):
On treatment days every Monday he received-
Vincristine thru his port-derived from the periwinkle plant (hmm, who knew?!). It causes the cells to stop dividing. Causes constipation, pain jaws, bones and joints, foot drop (trouble lifting front part of foot), pain in toes and fingers, loss of muscle mass, drooping eyelids, hair loss, seizures. This drug describes G's lack of activity and physical movement we saw in early weeks of Induction. He was so achey and sore. We also saw red -tinted urine and stools during this phase.
Daunorubicin thru his port-an antibiotic that prevents DNA from forming and preventing cancer cells from multiplying. Causes low blood counts, bleeding, fatigue, diarrhea, vomit, mouth sores, heart damage.
PEG injection once thru the leg muscle (this was one x the whole 35 days)-blocks proteins in cancer cells from producing. Causes loss of appetite and weight, fatigue, headache, stomach cramps, vomit, allergic reactions, seizures, kidney or liver damage, blood clots, jaundice, stroke.
Methotrexate Intrathecally (thru the spine/lumbar puncture)-causes cell death. Causes sensitivity to the sun, mouth sores, skin rashes, low blood counts, diarrhea, liver and kidney damage, cough, nervous system damage, neurotoxicity causing learning disabilities.
At home:
Prednisone (steroid) 3 pills in the AM and 2.5 in the PM-kills lymphocytes. Causes mood swings (oh, yeah), increased appetite and food obsessions (we know that already!), increased thirst (uh huh-all he craves is milk all the time), fluid retention, round face and protruding belly (oh, yes), sleeplessness, nightmares (yep), loss of bone mass, sensitivity to lights and motions, weakness, muscle cramps and pain, high blood pressure. There are many horror stories attached to this drug-raging emotions from highs to lows. We had some mood swings for sure but who's to say what was steroid and what was terrible two's or the old stubborn, fiesty G.
Bactrim 1 tsp every Monday and Tuesday -antibiotic that prevents PCP (pneumocystis pneumonia), lung infections
Nystatin 1/2 tsp 3 x day -prevents n treats mouth sores
Application of EMLA before treatment on all puncture points -numbs the applied area
This phase was alot of the up and down re: appetite, moods, energy level, physical abilities- fine motor and gross motor, blood numbers. We also noticed sores on his butt which leads to screaming fits everytime he needs a diaper change. These poisons are not kind to skin tissue. It was nerve-wracking when he wasnt walking, couldnt walk, screamed when we made him and even now it is not the most fluid gait but he is definitely picking up speed. He even tells us he is running! It's too funny. The problem with alot of these drugs is they are cumulative. We may not see vomiting or this or that one week but weeks later it all catches up, even during another phase so then you are not quite sure if it was a phase 1 drug catching up to us or a reaction to a stage 2 drug. You just dont know when. That sucks.
Consolidation Phase
September 7-late October/early November
(depending on progress. You return to the beginning or last point of "dropoff " if numbers do not cooperate throughout)
Weekly Treatment on Monday includes:
Methotrexate thru the spine
Vincristine thru port
At the start of phase and again at midpoint:
2 PEG shots in leg muscle
Ara-C (Cytarabine) thru port over 4 day period two weeks in a row (M-Th) a.k.a our homework drug that I leave clinic w all materials in a kit-kills cancer cells by disrupting DNA. Causes low blood counts (resulting in bouncing numbers and an increase number of transfusions needed during the phase) increasing the risk of infections (we already saw this by his 2nd week of dosage w a cold, cough and runny nose lasting a full week and continuing to date), bleeding, fatigue, paleness, excessive sleepiness, fever jaundice, flu-like symptoms w bone and joint pain, headaches, seizures, numbness in fingers and toes, nausea, vomiting, loss of appetite, hair loss, mouth sores, and irritation of eyes.
Cytoxin (Cyclophosphamide or CPM) pushed thru port, then monitored w fluids over 8hr period to assess bladder damage-prevents reproduction of cancer cells. Causes very similar to the Ara-C with the addition of bleeding from the bladder, cough, rashes, blurred vision, sterility, and metallic tastes after injection. When he is scheduled for this drug this is our LONG day bc of the push for fluids, monitored urine counts and weighing of diapers. Then we have to push the fluids again at home.
At home:
Nystatin 3x day
Bactrim every Monday and Tuesday 1x
No steroids during this phase
Mercaptopurine 1x day - interferes w growth and spread of cancer cells. Side effects are exact to the cytoxin w the addition of low blood counts, liver and kidney damage and gout.
Zofran as needed (definitely recommended 3x day when administering Ara-C during those 4 day periods). This drug has become our BFF. I think it really has prevented alot of the nausea and vomiting we could be dealing with and havent.
What we are discovering w alot of these drugs that while they do their job in terms of attacking cancer cells and keeping them away other body systems and functions pay the price. And because most of them effect blood counts each treatment day we could be met with a surprise transfusion that either has to be taken care of immediately or possibly wait til next day. We already have a bag that is solely our treatment backpack that has a change of clothes for G and I and laptop and other overnite goodies (as suggested by the nurses). And as I mentioned before (in retrospect) we left Induction behind w minimal bumps in the road. It worries us how cumulative these drugs are and how hard they will HIT us and WHEN. We are reading this book Childhood Leukemia A Guide for Families, Friends and Caregivers by Nancy Keene. It is such an easy read. So quick to get answers from. What we like about it is you dont have to read from beginning to end. You can hop around to what fits your need at the time-drug info, glossary, phase descriptions, nutrition, coping, hospital terms, etc. The one thing we dont like about it is the italicized text. They are personal stories from parents. You would think-oh how informative! Yes, it is. Sometimes too informative. There is no clear difference between an informative "good/happy" story or a "bad/wish I hadnt read that" story. I am a fast reader, glancer and glimpser and even I get caught off guard. There are some rough stories. Even those that are simply explaining how their child reacted to a drug is gut wrenching. It is real. Makes it pretty hard to swallow and wonder and worry about our guy. I cant read this book over long periods of time. It sits on our dining room table for either one of us to go to for whatever reason at the time. Even Jenny warned us to put it down from time to time. I fear for the long term effects these drugs will have on him. Developmental delays, physical therapies in the future, organ damage, social-emotional impact, etc? Who knows? I know I need to think positive but this is also the reality of it all. Any of it is possible. And we will be at this for such a long time. It is so frightening. Frightening to know that 7 weeks ago I had a near 2 yr old advanced in so many ways. I was lucky again, just like his big bro and even his lil bro at this point. But I guess the luck has held out bc so far I have not noticed any regression in any developmental area. When he is feeling good he is practically his old self w some setbacks due to soreness or tubies hanging out of his chest or an uncontrollable mood swing. It is just that there is so much unkown. Unknown chapters and discoveries and NO CONTROL on my part. I know I have said it before but it really is like waiting for the other shoe to drop (the first shoe being the fact that leukemia is even a part of us)...or maybe the whole shelf of shoes you're staring at in a Payless one day.
If all goes well then we move to Interim Maintenance Phase. Otherwise we backtrack. Here's to more speedbumps and not major highway construction!
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