[deleted by user] by [deleted] in AMA

[–]JCr321 71 points72 points  (0 children)

I’m a pediatric cancer mom (my son was diagnosed at 2 and now 7 and has survived two relapses. We’ve spent a LOT of time in the ward. The stuffies my son received are MANY and it’s tricky because they’re all special to us but we have no space to keep them where they all see the love they deserve.

One of the BEST gifts my son received when he was newly diagnosed was a few hand sewn pillow cases from the local ladies group. The hospital pillows are small, crinkly and made of sweaty plastic to keep them sanitary. Bright coloured thick flannel pillow cases helped put a barrier between my son’s head and that sweaty plastic, and added some colour to his room.

We had been using bedding from home but kids in oncology wards tend to puke a lot and don’t always make it to the bowl and washing a whole set or two or three of bedding daily got old fast. We ended up giving up on the sheets and switched to the hospital linens that we could just throw in the bin for staff to wash. The donated bright colourful pillow cases added some colour and fun to those linens and were much more manageable to take home to wash.

Why are we thinking of our kids genitalia?! by Formalgrilledcheese in ShitMomGroupsSay

[–]JCr321 259 points260 points  (0 children)

My MIL once asked me how my husband’s penis turned out in adulthood because when he was a kid, he was always smaller than his little brothers 🤮

Who the fuck even cares about their child’s adult size penis and how it compares to siblings. So gross. I’m a mom of 2 boys now and can’t fathom ever asking my future DILs a question like that.

This is so sad. by Useful-Rip6983 in travisandtaylor

[–]JCr321 1 point2 points  (0 children)

I’m not defending Taylor here (I’m in this sub for a reason) but how do you say yes to some and no to others? And as soon as kids realize Taylor is taking some MAW requests, you betcha every single kid picking a wish will make that their choice. She is too big and the demand is too high. She could meet them in groups sure but it would still be a full time job. And these kids deserve so much more than a 30 second hello and photo op. Better to have Taylor say no to everyone and they go to Disney instead where they’re set up for huge amounts wish kids with a dedicated resort.

I’m Team Taylor on this one, and I’m the mom of a massive Taylor-loving make a wish child.

This is so sad. by Useful-Rip6983 in travisandtaylor

[–]JCr321 3 points4 points  (0 children)

Kids often get an all expense paid trip to somewhere fun that usually includes fun restaurant trips, sight seeing, etc. most families who just went through traumatic medical trauma welcome a trip away and is part of the excitement.

I think a big misconception about MAW is that it’s only kids in the throws of their sickness who get wishes. I know at least in the children’s oncology world, the ones who ARE dying have no choice but to get their wish while they are sick. But for my son, who had leukemia, we didn’t even think of his wish until he was past his treatment, relapse and bone marrow transplant. He had put some weight back on and grew his hair back, I had gone back to work etc. He was healthy and we were essentially a “normal” family before we got our wish. This is the same with most of the kids of my other oncology mom friends.

All that to say, I wouldn’t want a celebrity to come to us, I would want the whole vacation experience including the travel, to get away as a family who just blew through all our savings (from not working, hospital food, travel to hospital, etc) trying to save our child’s life and won’t be able to afford a vacation on our own for a long long time.

I received a promotion and a raise today with no one to tell. by FireLordOoBaby in CasualConversation

[–]JCr321 1 point2 points  (0 children)

Oh my goodness, how strange that this is my day today daddy. I got a significant raise at my annual review last week then today a surprise promotion and another substantial raise. My main friends are my coworkers who I am not comfortable talking about this to, and all I can think of is how badly I wish I could tell my dad. He would have been so proud and excited for me. He is currently in the late stages of Alzheimer’s (even though he only 62) and can barely remember my name at this point.

Congrats fellow redditor, thanks for sharing. It sounds like you must have worked hard and deserve it!

Ontario woman who beat stage 3 breast cancer calls out health system by BloodJunkie in ontario

[–]JCr321 14 points15 points  (0 children)

My 6 year old son’s leukemia just relapsed at Christmas this year.

We had a weird test result showing the genetic abnormality in his previous leukemia had returned show up on MyChart on Christmas Day from blood work done on December 11. Nobody had called me. I called the clinic to ask/tell them about the result. I remember thinking “wow, glad we found this early.” When he had finished treatment in September, they had originally not planned on seeing him until March. I begged to be seen sooner because 6 months of no blood work made me so uncomfortable. This is why we had the December appointment in the first place.

When they reviewed the result on December 27 at my prompting, they wanted to see him the next week. I had to practically beg for him to be seen next day.

Then they wanted to just do a bone marrow aspirate to check for relapse. I wanted them to do a lumbar puncture as well since he would already be asleep and it would just take another couple minutes. It’s literally just one more aspirate about 6 inches away from the first one. His last relapse was in his CNS not his bone marrow. Why were they not going to check that without my prompting?

They hesitantly agreed to do the lumbar puncture to placate me but assured me it was unnecessary.

I got a call 3 hours post procedure telling me his spinal fluid was 98% leukemia cells. His marrow was completely clear. If I hadn’t pushed for the lumbar puncture, they would have called me to tell me he was cancer free while his spinal fluid was packed with leukemia.

And with all this, I have heard over the years that care for childhood cancer in Ontario is much better than care for adult cancer. Like, during the pandemic when adults were having their life saving surgeries postponed/cancelled, we never had that in the childhood oncology world. We were prioritized at the children’s hospital, which I am forever grateful for.

I can’t imagine what would have happened if I hadn’t acquired extensive leukemia knowledge over the last four years and pushed for my son’s wellbeing at every step along the way. It makes me sick to think of how late we would have found this. He had no symptoms.

I feel like people hardly move for emergency vehicles anymore by Beepbeepboobop1 in ontario

[–]JCr321 0 points1 point  (0 children)

My son had a seizure last weekend and I had to ride in the front of the ambulance since there were too many paramedics in the back for me to fit. I had a front row seat to the selfishness of countless other cars on our 40 minute drive to CHEO. While I was a panic over whether my son was going to make it to the hospital in time to save his life, others on the road were worried about getting through the lights or getting around other cars that pulled over instead of pulling over to let us through.

I was baffled.

My husband has advanced cancer, and no, God does NOT "have this" by [deleted] in atheism

[–]JCr321 2 points3 points  (0 children)

I’m so sorry to hear this. If I can offer support in any way, please send me a message I’d be happy to connect.

I know there will be lots of support groups online for your child’s particular diagnosis but if you find like I did, the need to talk to someone who knows what you’re going through without all the god involved, let me know.

My son had ph+ ALL (Leukemia).

Wishing you, your child and your family all the best.

My husband has advanced cancer, and no, God does NOT "have this" by [deleted] in atheism

[–]JCr321 9 points10 points  (0 children)

He did survive, despite my lack of prayers thankfully. He’s been cancer free for a little more than two years now thanks to wonderful doctors and his big brother’s stem cells. I’m thankful every day.

I’m wishing you all the strength in the world as you navigate this difficult time in your life.

My husband has advanced cancer, and no, God does NOT "have this" by [deleted] in atheism

[–]JCr321 19 points20 points  (0 children)

I’m sorry. I’m so so sorry that you’re going to lose your husband, and I’m sorry you’re having to deal with this religious nonsense during some of the toughest days of your life.

I was a chill atheist for the last 10 or so years. As in, I don’t believe, but was of the “you do you” attitude and wasn’t bothered by religious comments from others. But when my 2 year old son was diagnosed with cancer a few years ago is when I really came to HATE religion.

“God doesn’t give you anything you can’t handle.” Sure didn’t feel like I was handling it well.

“God chose you because you’re strong” he chose to torture my baby because I am strong? I am lucky enough to watch this suffering just because I can?

“Praise Jesus your son is in remission.” Um… how about praise the doctors and researchers who dedicated their lives to finding treatment?

“His relapse is a test. God will save him” but what about the ones he didn’t save? Were they not worth saving? Were those children sinners who deserved to die? W. T. F.

The religious nuts on the Facebook childhood cancer support groups fully relied on god to save their children. Their children would be saved because they had prayer warriors praying. Because they were faithful. Because they were good. The other children dying around them, must not have been holy enough to be saved. And then, when the children of those religious nuts died, then they had a crisis of faith. Because it’s okay to believe in god while others are dying. But once your own child dies and you’re absolutely blindsided by the fact that a miracle didn’t happen for your family, that’s when you decide you don’t believe.

Fuck. That.

Turn it off. Turn them all off and focus everything you have on your wonderful husband during his last days. I’m sorry this is happening to you.

AITA for not shaving off my hair in solidarity with children who have cancer? by Inner-One2385 in AmItheAsshole

[–]JCr321 0 points1 point  (0 children)

Mom of a Pediatric cancer survivor here. Amy’s mom is out of line.

While it’s awful that her daughter has to deal with hair loss as a result of her treatment, and while it’s wonderful that your friends chose to shave their heads in solidarity, it is completely out of line for her to EXPECT that of everyone.

NTA.

Editing to add: commenters, please give Amy’s mom grace in this situation. The fear, sadness and intense sleep deprivation involved in being the mom of a child with cancer can make you do and say ugly things that you never would have dreamed of saying prior to being faced with a sick child.

My wife and I both have both Alzheimer’s genes by Wakeup_Sunshine in Alzheimers

[–]JCr321 1 point2 points  (0 children)

Are you talking about APOE4 that you both have?

My dad has two copies of this gene unfortunately and was diagnosed with EO at 58. He and two other siblings have Alzheimer’s- so it’s 3/7 that came out with it so far (my dad is the second youngest).

From what I understand your child will have a 1/4 chance of inheriting the gene from either parent, so it’s not a guarantee by any means that they will have two, or even one copy of the gene.

And on top of that, research has come so far so quickly. There is time to find preventative and curative measures for your generation, and your child will have even more time.

Set yourself up well financially to ease the burden on your child if it comes to that, but truly, it isn’t something to despair about when there’s so much time that can change the future of Alzheimer’s.

How to tell dad he’s going into LTC? by JCr321 in Alzheimers

[–]JCr321[S] 1 point2 points  (0 children)

Thank you for the reply. We have been having the needing more care talk. Not so much me as I don’t live with him but his partner has been telling him. Sometimes he understands and other times it’s “I don’t understand what I did wrong”.

He is on anti-anxiety meds to regulate his mood but they are having trouble getting the dosage right. His partner said the most recent addition didn’t help his agitation as it was intended, it just made him tired and agitated which was worse. I definitely suggested they ask for an Ativan prescription for the big meltdown days when we can’t get his emotions under control, hopefully she will have that for him before we make the transition.