Leukemia

Part 1 of 2 Why I Wish My Kid Had Leukemia

First, let me say a disclaimer. I don’t wish any person, much less a child, to have to deal with a health condition. But sometimes I think it would be a lot easier to deal with Leukemia than it would with mental illness.

A few years back my friend’s daughter was diagnosed with Leukemia. She posted the diagnosis on FB, including the outlined treatment plan, timeline, and overall good prognosis– but long road ahead. I immediately went out and bought some gifts to send to her daughter and son (siblings need attention too) to help with the days ahead. She would continue to update on FB– things would be going well and then they wouldn’t. She went through chemo, she would spike fevers, and end up in the ER. She had a Make-A-Wish trip granted. All of this is posted on Facebook and all the posts I would “love” or send thoughts and prayers to. They would talk about how appreciative they were of all the support from friends and families. Their work was flexible with them and friends helped out. By no means was it an easy journey, but it was definitely a socially acceptable journey. She made it through all the treatments and is in remission and has been for years now. She is healthy.

Mental health struggles are not like this. We knew early on that our son had “struggles.” By 2 years old we were struggling. By 4 he was in Occupational Therapy, thinking maybe we could address some of the “sensory needs” and “self-regulation” pieces. He was anxious but yet wild. He would be withdrawn, but yet take risks. Being in the nursery at church was awful for him. Sunday School he would scream, cry and take off running— and would never come to the point of self-soothing. He loved sports, but wouldn’t step on the field. We went, week after week, We made social stories to prepare him. We did tokens and incentives. Punishments and consequences. Nothing worked.

By 5 he was in therapy. I clearly remember sitting in the therapist’s office as she asked him to write some things he was proud of. He freaked out, tore things up, and climbed the furniture. I cried. I knew that a child with low self-esteem, high anxiety, and high impulsivity did not have an easy road ahead. I work in a high school– I know what path those traits lead to.

So we tried in-home therapy. He kicked the therapists. She told us this was an issue of power and control and we needed to set firmer limits. We would set limits and we would have to physically restrain our 5-year-old to keep him safe. He would cry, He would yell. He would spit, He would fall asleep in the middle of the floor exhausted from the physical and emotional toll it would take on him. We would cry ourselves to sleep.

We tried OT again. We talked to the school. We talked to the pediatrician. There was no blood work to point us in a direction. There was no timeline or prognosis. There were just lots of “possible” diagnoses. We tried a new therapist. We did new testing. This testing showed “off the charts” in ADHD and “off the charts” in anxiety. He was a high-energy, very anxious, struggling 7-year-old. We debated on medication. Would it change him? Would it help? Would it make it worse? Were we taking the easy way out? But tests don’t lie, right? So we started medication for ADHD and saw some results. And then we didn’t.

So we started therapy again. And through therapy, more things started to come out. And behaviors continued at home. Were these behaviors from hyperactivity or anxiety? Then there were things about OCD. Was this different than Anxiety or just another piece of it? Do we need more medications? Different medications? No medications? Was it even OCD? We tried new medications. We tried an online course in battling OCD. Things were better. And then they weren’t.

Things at home got worse. The impact on the siblings increased. The older sibling got angry. The younger sibling got worried.. The impact on my relationship with my husband increased. When your child has Leukemia you work together, as a united front, to fight this awful illness. When it is mental health and behaviors you blame each other. You are too strict. You’re not strict enough. Let me handle this. Why do I have to handle everything? He’s crying. I’m crying. We’re all yelling. And then things get better. Is it the meds? Is it sports? Is it the change in weather? Is this remission? No, mental illness doesn’t have remission.

And then things get really bad. Is it puberty? Are we on too many meds? What if we weren’t on meds? What if we’re on the wrong meds? The mental games never end. And the damage escalates. And the behaviors escalate. If he was throwing up and losing his hair, a symptom of the chemotherapy, we would comfort him. And post it on Facebook. And everyone would send us though

Part 2 of 2 ts and prayers. But aggressive and angry behaviors don’t result in comfort or Facebook likes. And in the middle of all of this is a hurting boy that we still don’t even know what the diagnosis is, or the treatment or the prognosis.

And then we are in the ER. He wants to die. He wants to hurt us. We are all crying and scared. But yet, there is no answer at the ER. There are doctors, nurses, and a crisis counselor. There is a padded room with surveillance. But there are no answers. Just “could be this…” “maybe that..” “It’s up to you…” And through all of this, there are no Facebook posts. This is not something you share on Facebook. Or at work. Or with teammates or teachers or coaches. People don’t send “thoughts and prayers” or offer to bring over food. No one, except those closest, even know.

I can handle people knowing, but I can’t handle people thinking poorly of my son. I can’t handle them thinking of him differently. I can handle them judging me, but not him. He is creative and curious. He is crazy smart and athletic. And he has mental health issues that will impact him for who knows how long. I will not let people judge him by that. If he had Leukemia, everyone would know. He would not be judged. He would be seen as a survivor and a fighter. He would be seen as amazing to keep going when things are tough. He would be a hero. He is a hero. He is a survivor and a fighter and gets up every day, no matter how bad he feels. But no one knows this. He doesn’t have Leukemia.

And now he is 12 and we have a variety of diagnoses– ADHD, Anxiety, OCD, Depression, and maybe BiPolar. Is it all of them? Is it none of them? He is on 5 medications– is that helping or making it worse? There is no blood work. There is no scan or x-ray. We just keep going to appointments and trying. If he had Leukemia, he would have a clear diagnosis. We would have blood work and numbers and a treatment path that the doctors would figure out. I wouldn’t be second-guessing the medications I have him on. I would have proof that he needed it. I would not be judged for putting him on medication. No one is judged for choosing chemotherapy to treat Leukemia.

He hates school. His grades are dropping. And teachers know he has “struggles” but they don’t know the full story. Homework doesn’t get done at home because it is a battle. A battle that will result in holes in the wall, physical aggression and at times, thoughts of hurting himself. No grade is that important. But teachers don’t know that. I don’t tell them, because they will judge him. They will judge us. Is it parenting style? Are they too enabling? Is it too much technology? If he had Leukemia, there would be understanding, support, exemptions, and reductions. No one would think that Leukemia was caused because of bad parenting. Instead there are visits to the principal’s office and emails saying the “continued pattern of poor choices.” And he hates school more.

And we can get through this. We will keep trying things. We will try Equine therapy. We will find things that he is good at. We will find everything that makes him see the good in himself. But sometimes those things create anxiety. Are we making things better or are we making it worse?

And the biggest question is what is the prognosis? Yes, Leukemia can kill. But the overall prognosis is good. But what about his prognosis? Is it good? Do we find the right meds? What about when he is in high school and there are temptations? And what about those temptations that impact the medications? Or risk-taking? Or driving too fast? And what about suicide? And maybe all of this works out, but what about a job? A relationship? Paying bills? Will these things work out? Will he be OK or will the mental illness take this away from him too? There is no official diagnosis. There is no official treatment plan. There is no timeline. There is no prognosis. Some days I wish my kid had Leukemia.

Hi, my name is KaylaSpeaks1111. I'm here because I’m looking to connect to other people dealing with leukemia

#MightyTogether #Cancer

I am tired of being told that I have a good cancer compared to other types.
I am tired of being told that I am strong.
I am tired of being told to accept my healing.
I’m tired.
I’m tired of it all.
No, it’s not a good cancer. It’s still CANCER.
Yes, I am strong, but no amount of resilience will cure a life long blood cancer.
And,
What healing? I’m still dealing with it and will deal with this the rest of my life.
I can’t even get the medication going with out breaking into a rash.
I don’t have energy.
I don’t have motivation.
I just dont.
But,
I’m trying.
I’m trying to get back into the swing of things.
I’m trying to move past this diagnosis.
I’m trying, but it is exhausting.

#Motivation #Support #Cancer #ChronicMyelogenousLeukemia

Hi, my name is MummyTut82. I've been diagnosed with so many illnesses diseases that at age 40 and Mum of 3 darling children, I have lost all quality of life and I'm scared of myself honestly.. For I can't keep just 'existing' like this and I know it is destroying my children's hearts watching me so sick ... it breaks me more every minute coz I honestly believe they shouldn't have to see Mummy this way anymore it isn't fair on them... #icantdothis😮‍💨 #heartbroken💔 #idontwanttoleavemybabies😪 #itisjustfartoomuchtohandle💔

#MightyTogether #PTSD #Fibromyalgia #Anxiety #Depression #ADHD #OCD #Grief #Leukemia #FunctionalMovementDisorder #DiabetesType2 #Cancer #RheumatoidArthritis #OpticNeuritis #NeurocardiogenicSyncope #DemyelinatingNeuropathies #CeliacDisease #InappropriateSinusTachycardia #congenitalheartdefect/Disease #BirthDefect #IronDeficiencyAnemia #Arthritis #ArteriovenousMalformation #SuicidalThoughts #chronicactiveepstein-BarrVirus #ChronicIllness #polycysticovarysyndrome(PCOS) #Hyperparathyroidism #ThyroidCancer #Cardiomyopathy #CardiovascularDisease #CongenitalVascularCavernousMalformations

My cup runneth over. The cup is half empty or is it half full. What is the lens we see ourselves through to make these judgements

I thought my cup was full enough till it wasn’t. And this was acceptable but now my life may be running out of time. How can that be. I do yoga I eat well I volunteer. Yes it’s your turn, sorry.

It was not only my turn, it was my partners turn as well. He has been living with a terminal leukemia diagnosis for five years when my heart begins to lag behind.
We have both entered this end of life arena not yet 70.

In hindsight I witness the grace of this experience I would receive the news that emergency open heart surgery was required. I had hiked thirteen miles the month prior and something broke loose. It was during Covid times. I thought me just sick.

As we all did during Covid we found ways to look for meaning in these confusing times. My partner and I were two days into a four day online meditation retreat with Mountain Cloud of Sante Fe. A woman named Virginia would tell a story about a Buddhist nun being told she was going to die of her cancer. He wanted her to be alarmed it seemed. She thought I am my cancer and was not to be rattled. I took that in. Impermanence

We sat at our table to process the meditation gathering event happy to be doing it. The call came in. You need emergency open heart surgery. We missed it on the first look
I hang up. A deer in the headlights He makes all the reservations while we sit at table still me hardly able to focus. Done. I stand. I say I’m going out to our camper to process alone and leave. In a good marriage we have processed most things together so this was different.

I lay on the bunk and hear my mind say the words open heart surgery and my body starts to panic. I have never experienced panic mode. It started at my head with thought and traveled all the way down my body picking it all up together when I remembered Virginia. I am my cancer she said. I am my heart. And the trembling stopped

I called to mind they looked again and found it after I requested it. I wasn’t getting better. They listened to me. This is good. I immediately came back to the cabin to relieve my best friend.
And the dance began

Where is my cup now. Shouldn’t it be full. I’m feeling pretty mighty. I am hiking seven miles already one month into recovery. It’s pretty full. Two months and one day after open heart surgery and the day after being given a clean bill of health, I get a call at eight pm. What a hard call that must have been being my doctors my friend and we live in a small Alaskan town. We see a blip on your last ultrasound. It could be nothing

It wasn’t nothing, I would turn down the only option in the medical profession that would insure me a long life. I said I have loved my life. I will not be tethered to the system on my way out. I will live with this cancer along with my partner He is considered an outlier being five years past his expiration date.
So we live
Isn’t that what the mighty do?

We are finding our way into an alignment not felt before as it’s just gotten real. Everything matters. Everything belongs. We are discovering new ways to approach a very dire piece of news not falling apart but thriving.

If we can learn to listen to what our bodies are saying and filter out the white noise of what you should be doing, like our doctors, family and friends trying inform , we may just be able to hear, it is my belief these diseases are messages to help us change how we live and move through the world.

Feeling mighty comes in many packages. I am delighted the real might showed up when needed so we may keep it real continuing to help others along our way.

Hi, my name is Vorlex. I'm here because I have Acute Myeloid Leukemia in remission after a stem cell transplant. I’ve been suffering from increasing chronic pain that is becoming debilitating and I’m looking for suggestions to cope or similar cases.

#MightyTogether #Leukemia #MyalgicEncephalomyelitis #Fibromyalgia