Induction is 29 days. It is the first phase of frontline treatment. Frontline is the initial portion of the 2-3 year treatment for acute lymphoblastic leukemia.
Days Spent Inpatient:
Days 1-4 for beginning treatment, Day 7-18 to treat a staph infection.
- 2 Bone Marrow Aspirates
- 1 Permanent Port Placement
- 3 Intrathecal Chemo Doses via Lumbar Puncture
- 5 doses of various IV administered Chemos
- Daily steroid pills
- 16 days of twice daily blood thinner injections (If your child is on blood thinners please see the post script.)
- 2 weeks on antibiotics for a staph infection
Symptoms we had:
- Fatigue- Compared to how he has been since early December, it wasn’t markedly different, but compared to normal he had very low energy.
- Frequent urination. (We also had a 1500ml intake minimum in the hospital, so this could have contributed.)
- Weight gain in his face and belly.
- Voracious appetite- NEVER wanted to stop eating. Craved popcorn mainly. We required him to eat plates of vegetables between every carb binge.
- Emotional swings- both tears and laughter, noticeable, but I wouldn’t say unmanageable to any parents who has ever raised a toddler.
- Severe leg and hip cramping Day 6-8. Insomnia on Day 18.
- Blood clot- developed shortly after port placement and PEG chemo dose- cause unknown.
Symptoms we missed:
- Constipation- oh hey, real talk. Beau had 3-4 bowel movements daily. I attribute this to his vegetable intake which was 4-6 servings daily. The doctors said because steroids cause the body to crave salty carbs it normally is a given to have this symptom. Glad we avoided it.
- Hair loss- none yet. Doctors said that they would expect him to loose it sometime in the next two weeks. Then again, on Day 1, they said that he’d likely loose it by Day 14 and here we are at Day 28 with a full head of hair- So, who knows. Most other parents anecdotally say hair is lost during Delayed Intensification.
- Immobility- often the steroids leave kids close to immobile by Day 28. Beau did have a significant couple days of muscle cramping, but aside from that has been ok.
So much seemed hard about this month, but I think the biggest adjustment was learning that our kid had cancer, obviously. The knowing he has cancer and not really knowing what that would look like day to day allowed for a lot of idle thought about the what-if’s. Each day we are more a part of this reality seems easier than the last.
Beau has been kicking butt on all things needles which is a God send. If before this all started you had told me that we would be giving him 2x daily blood thinner injections, weekly port access, and various blood draws, I would have said “FORGET IT!!!”
- Beau started wearing his facemark with more confidence by month’s end. We also got him one that wasn’t disposable. https://www.vogmask.com I am not entirely sure of it’s efficacy, but I figure if he wears it rather than nothing- it’ll help! We will likely enforce disposable ones if his counts are below 500 ANC (when his risks are highest).
- Once the chemo really kicked in, Beau’s blood levels recovered nicely and remained high through months end. This allowed us to go in to public with less concern- but still lots of hand washing and “don’t touch that!”
- Our household got acclimated to all things medical both because of the twice daily blood thinner injections and the port being accessed at home for the days between when we were discharged and he finished his IV antibiotics.
- Beau’s Bone Marrow tested with less than .01% Leukemia at the Day 29 Bone Marrow Aspirate! This sets the course for Standard Protocol moving forward.
Post Script: Blood Thinners
Beaudin adjusted well to the twice daily blood thinner injections when we were inpatient at the hospital. Once we arrived home and filled the prescription at our local pharmacy, it was another story! The pharmacy filled the prescription with standard pre-filled syringes with a VERY different sized needle. Let me tell you about the screaming…. Suffice to say, the morning after our first dose I called all around the county searching for a 26g 3x8in, 1ml TB Syringe and a vial of the medication, to mimic the administration we had done so seamlessly at the hospital. This was not easy to come by as the pharmacists were sure that that size needle and syringe (normally used to test for Tuberculosis) wasn’t appropriate, but after many a poignant phone calls with our nurse and the pharmacists we got it approved and prescribed. This was a game changer! As it turns out, the needle size of a pre-filled adult syringe is measurably different (ask Beau!) than the TB Syringe alternative. Please email me if you have other questions about this!