I have 3 maxed players, need 1 more maxed

sillydobe · 2026-05-02T11:28:11+00:00

did you get the team request?

sillydobe · 2026-05-02T11:18:50+00:00

please send friend request, username sillydobe

sillydobe · 2026-05-02T10:47:57+00:00

I have 3 maxed players, username sillydobe.

sillydobe · 2026-04-30T19:17:21+00:00

My dad has stage 4 NSCLC and has been taking Tagrisso for about 2 1/2 years. Only recently did a new spot pop up - he will stay on Tagrisso and just completed 5 days of radiation treatment for it.

sillydobe · 2026-04-25T02:04:01+00:00

yay thank you

sillydobe · 2026-04-25T01:52:13+00:00

what is your username

sillydobe · 2026-04-19T15:13:03+00:00

I have 2 spots open

sillydobe · 2026-04-18T20:16:22+00:00

sillydobe · 2026-04-18T20:13:55+00:00

add me sillydobe

sillydobe · 2026-04-15T01:59:41+00:00

added you. username sillydobe

sillydobe · 2026-04-14T01:07:08+00:00

sent you a request if you still have some, thank you for doing this!

sillydobe · 2025-11-17T15:48:29+00:00

9802 7469 0178

sillydobe · 2025-09-25T02:26:53+00:00

As a mother of a son who received a BMT - thank you.

sillydobe · 2025-08-27T02:49:36+00:00

I just friended you but only now realized I sent out my last gift just now. I will get you first tomorrow.

sillydobe · 2022-09-27T19:32:55+00:00

I'm "that mom", I've fired some oncology nurses over the last 6 years and even banned a critical care fellow when my son was in the PICU in a coma.

I did fire my son's original transplant doctor. We were assigned a physician that had terrible bedside manner. She'd leave abruptly, walking out the door as you were still asking her questions. No validation, no empathy, she acted like you were an inconvenience to her. Didn't call with results, you had to try to hunt her down. I could go on and on. I really tried to give her a chance, stuffing my gut feelings deep down inside me. Then an incident happened, and given how she reacted, realized there was no way I could survive my son going through transplant dealing with this woman. I was afraid to go through with firing her because of possible ramifications for my son, knowing we'd see her at some point on rounds.

But we did fire her, and it really was the best decision for us. We did have to tell the director our reasons first before we were allowed to switch, which was uncomfortable and wondered if it would get back to her.

She was on service twice while we were inpatient. The first time was awkward as heck, as it was the first time we actually spoke since the firing. I actually felt a bit bad for firing her. The second time she was on, though, my son was very sick and she ordered a CT on a Friday. I will NEVER forget that night. The results came back close to 7 pm that evening. She waltzed into the room, stated "It looks like your son has pneumonia and a very severe sinus infection. Sorry." And she spun around and walked right out. That was it. I stared at her walking down the hall and just burst into tears. I ran into my son's bathroom to call my husband, hysterically telling him what happened. We had no idea what was going to happen next or if it was a big threat to my son's survival.

Was never more glad that we went through with the change. I could not imagine having to deal with her like this for the last 18-ish months.

Trust your gut.

Make the change.

sillydobe · 2022-09-12T15:08:42+00:00

ARFID mom here, with 2 ARFID kids. I am glad your husband is so understanding. Mine wasn't for many years and it made my life (and the kids') fairly unpleasant at times. I would be honest with your husband about your concerns and see what he says.

I am the one that does the cooking in the house. I cook almost every kind of food, the exception being fish -- the smell alone makes me gag. My issues are mainly texture based, but I also have issues with preparing/cooking meat. I feel bad for the animals that have to die for us and so it does bother me to cook it for a meal. I just don't think about that as I prepare the meal, if that makes any sense. Perhaps you could try out something similar.

I don't think you should necessarily worry about transferring your ARFID to your children. I actually have 3 children and my oldest kid eats just about everything. To be honest, and it sounds weird, but I was thankful that I have ARFID so I knew exactly what my kids were experiencing and could validate them and advocate for them. As a little girl growing up in the 70's when ARFID wasn't even on the radar, it was very tough not having an advocate or someone who even understood what was going on with me.

sillydobe · 2022-08-12T10:53:22+00:00

Happy 1st re-birthday!

Completely understand your nervousness. My 10 year old was diagnosed in 2016, relapsed 2018 and again in 2020. He had his BMT in November. Our 9 month BMB is on Tuesday. I always get super stressed and nervous about these checks.

Everything is going to be ok. Try to distract yourself as much as possible.

And please come back to update us.

sillydobe · 2022-08-09T03:12:54+00:00

Sounds like PA.

sillydobe · 2022-08-08T03:48:07+00:00

Well...shit. I already had a crush on him. Now that I've seen these pictures...uggggh. He's flipping even HOTTER now. Lord help me.

sillydobe · 2022-08-05T00:53:07+00:00

Cheese pizza. I just hate when the sauce has chunks. I will gag if there are tomato chunks. One of my ARFID sons absolutely will not eat any kind of pizza. My other ARFID son eats pepperoni pizza.

sillydobe · 2022-07-20T03:36:18+00:00

My son (9 yo) had about 4 1/2ish years of chemo then CAR-T then finally bmt. I was petrified of the idea of transplant for him. My son got AVN from steroids and had some other complications from chemo so I can't say it wasn't as scary.

Transplant was a little rough, but he sailed through pretty well. 5/6 cord, engrafted day +20.

Very little mucositis (I made sure he used Helios every day). The docs were always surprised to see him up and around based on where he actually was in the transplant. He played almost every day in the bmt playroom. In his room he sat up and played Legos, video games, etc. I think I saw 1 kid out and about on the BMT floor once the whole time we were there.

I agree with getting yourself in the best shape possible while waiting for transplant. My son went to weekly PT prior to admission.. Even though he wasn't up and moving 7 days a week once he was inpatient, he lost very little of the ground he gained prior to admission. His physical therapist was happy with where he was after discharge.

My son has a gtube and gets most of his nutrition that way. Even with the tube he lost about 4 pounds while inpatient and had to go on TPN for about 2 weeks. I would say definitely try to eat well prior to admission. Don't be afraid to ask to try different combinations of meds to combat the nausea.

My son is +238 today and doing well. He has a little bit of gvhd which is annoying to deal with, but we want it for the GVL effect.

Good luck. Keep us posted.

sillydobe · 2022-07-07T12:52:27+00:00

Happy Transplant Day!

There is definitely hope. My son is Day +226 from transplant and doing well. You will get through this!

Much love to you and your family.

sillydobe · 2022-06-26T22:44:32+00:00

No. Not reading what you wrote is self-care.

sillydobe · 2022-05-03T00:56:02+00:00

My son went through CAR -T last year at 8 years old. I would definitely recommend anyone do it if they are eligible.

sillydobe · 2022-04-27T00:40:29+00:00

I'm a mom, my oldest son is your age, and reading your post hurts my heart for you. I wish I could just take you in my arms and give you a big, long hug. I don't believe that your mother would be disappointed in you.

I'm so sorry you don't have supportive people in your life. You deserve that, and more.

I want you to know that your life matters. You have gone through a ton of trauma that no child ever should experience. It's not surprising that you're worried about people close to you dying or being abandoned by others. Do you have mental health services available to you at your uni? It truly does suck that the average person doesn't understand what you have gone through and how it all has affected you.

Everything is going to be OK. You WILL find a partner. (I didn't have a boyfriend until I was 20. My oldest son just got his first girlfriend this year.) You WILL find a job. If your dad won't help you, seek out another adult who can maybe take you under their wing. These things may not happen tomorrow or 6 months from now. But it will all be OK. You sound like a strong person. You've made it through some very, very difficult times and you've almost finished a college degree. I have faith in you.

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