Consolidation is 28 days. It is the second phase of frontline treatment. Frontline is the initial portion of the 2-3 year treatment for acute lymphoblastic leukemia.
Days Spent Inpatient:
NONE! (oh sweet baby Jesus!)
- 3 intrathecal chemo doses via lumbar puncture
- 1 doses of IV administered Chemo
- 28 days of daily chemo via pill
- 28 days of twice daily blood thinner injections (If your child is on blood thinners please see the post script.)
Symptoms we had:
- Headache- Beau had one headache this month. Because this whole cancer train left the station with a fever and a headache, we were a bit concerned. We called the on-call ONC doctor and he didn’t have concern over it. We gave him two doses of Tylenol and it resolved.
- Bruising- Beau has a ton of bruising from his blood thinner injections. We use the back of his arms and top of his thighs, on rotation, and he is pretty black and blue everywhere. The doctors have confirmed it is “normal” bruising. We’ve started applying arnica daily, hoping that will help the bruises recover. But with an injection in the site every other day (as we rotate through the 4 sites) there isn’t a lot of down time for healing.
Symptoms we missed:
- Hair loss- Beau’s hair is changing in texture, becoming almost bristly or wiry. And there have been moments when the sun beams catch his buzz cut just right when I wonder if it’s thinning. But generally everyone is mumbling, “Why does he still have hair?” It’s not unheard of that he would still have it, most likely he will lose it in this phase or the next, but there is a small sliver of hope inside me that’s wondering if the insanely thick hair I’ve had my whole life that I then passed on to Beau (Burnett hair lineage is strong) will get him through as one of the few % of patients that don’t experience complete hair loss. Time will tell!
- Updated after the fact- Most children loose their hair after receiving doxorubicin during Delayed Intensification.
- I am not sure of the specifics of other symptoms we missed. This month was really uneventful from a symptoms perspective, both because we didn’t have any and also because there weren’t many we were warned about to worry over.
This month Beaudin had his intrathecal chemo doses via lumbar puncture every Friday. The second Friday morning we were at the hospital a bit early and Josh and I decided to grab a couple smoothies from the lobby coffee shop. A dear friend had gifted us a gift card there so I wanted to snap her a quick pic as a ‘thank-you!’ While attempting to get Beaudin to be agreeable in the picture Josh offered him a sip of the smoothie. A literal sip. He spat it out and proclaimed it was gross. 45 minutes later as we were checking-in, the nurse asked him the standard questions, “Have you had anything to eat or drink this morning?” When he replied that he had some smoothie I knew things were going to fall out of kilter. Long story short, an un-enjoyed sip of thank-you smoothie resulted in the procedure being pushed to Monday.
As I retell it, it reads like a non-event. But in the moment, I was full of emotion. Anger- seriously! 1/4 of an ounce of spat out thank-you smoothie and we are axed?! Ugh, why did I want that dumb picture! Why did Josh give him the smoothie! Why won’t Beau ever smile for a camera! Why are these the rules! This is so stupid! Fear-Now we are delayed 4 days, will the treatment be as effective?? Will this cause him to fall into the percentage of kids that don’t survive? Over a stupid damn sip of thank-you smoothie? What if he hadn’t mentioned it and then aspirated during the procedure? Shame- What do the doctors and nurses think of us, the parents who gave the kid food when he was suppose to be NPO. Are they mad at us? Do they think we are stupid? This is embarrassing. Damn it, damn it you thank-you smoothie. We are so stupid. When will we ever figure this out! Stop crying, stop being emotional, pull yourself together woman!
It was shocking how quickly a simple mistake launched me into a really dark emotional place. I was weeping hot tears as the doctors confirmed the delay. This is my grief. A short fuse, muddled logic, lack of self-compassion. And it was shocking to see it show up there on a Friday morning at check-in. The nurse reassured us that this happens quite often, and not to worry because it is a mistake that “you only make once!” They were very gracious with us. Even the anesthesiologist came in and reassured us that it was a commonality. Our Monday appointment ended up being just fine and the month continued on without a hitch. There is a lot more to unpack here, clearly, but for now we will just leave it as: the hardest part of the month- grief.
This month felt like a whole lot of “are we missing something?” Beaudin did great physically. The chemo had mild side effects and throughout the month his blood levels remained high. We were able to go swimming at the Rec Center twice, attend a week of school, and go to a field trip at the Downtown Aquarium. Things felt normal in all the best ways and also normal in all the confusing ways. Should we be having meals delivered still? Should Selah be in Montessori? Is this cancer? This seems too easy?
That is one of the things about cancer. Even when things are good, they are good in light of how bad they have been or how bad they could be. I wonder if this ever changes? Is there ever a good where you aren’t looking over your shoulder for the impending or narrowly missed bad? At some point are things just good, period? For now, we live in the comparative good.
- Beau didn’t wear a face mask really at all this month. As this whole Leukemia thing normalizes, it’s hard to know what to be concerned about and what to be lax on. His nurse said they don’t recommend he wear a mask to school. If his counts are high enough to attend (ANC above 500) then he is safe without a mask, and they find the mask to be an emotional barrier that is unneccessary. We will return to the mask if his counts are below 500 ANC (when his risk of infection are highest), and more likely, won’t leave the house as often.
- Multiple times this month we remarked, “Man, if it weren’t for the blood thinners, it’d be easy to forget this cancer was a thing.” We are so thankful for a little reprieve in the midst of this journey.
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!
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