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PR (Rather Reese related) Anxiety

fancynewbeeslyfancynewbeesly member
in Parenting
So, I noticed that whenever we have a longer break from the doctors--of more than a week, I start to get nervous and anxious about EVERYTHING. Right now, we go back next Wednesday, the 6th; and already I am starting to get nervous. I seriously worry about every bump that I see, bug bite, bruise, her not eating, being tired, wanting to be carried,  moody, etc. I second guess every tantrum, etc. I am fine with weekly appointments, because then I know her blood work is checked regularly. 

After nap, I noticed a bump on her forehead--it may be a bug bite or her hitting her head while sleeping--she is restless and bumps into the bedrail a lot. It started to make me panic. DH calmly explained that if she HAD hair, half the bumps, scratches, etc (at least on her head) that i notice would be covered up, and you probably wouldn't have even seen them.

I am seriously going to be a nervous wreck the rest of this week. I can't imagine once we get to once to the regular once a month appointments (which should be in October.) 

Also, the next round of chemo that she starts is supposed to be the worst. Everyone that I talk to has that "look" when I mention the next phase. But maintenance is the goal, so I have to get through the next round. 
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Re: PR (Rather Reese related) Anxiety

  • ShakeyJakeyShakeyJakey member
    I'm so sorry. I would be the same way. Is there a support group for parents of any kind at her hospital?

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  • cyprissacyprissa member
    Sorry for all that you are going through. I think it's natural to be hyper vigilant considering the circumstances. Maybe it would help to have someone IRL to talk to about it. Hugs!
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  • billybumblerbillybumbler member
    I'm sorry you're going through this. It's in no way comparable to your situation but when DD was little she had trouble gaining weight so we went for weighings a lot. When we had a longer break between appointments I would get so anxious. It's like we become kind of dependent on the docs and don't trust our own judgment. I can only imagine it feels something like that times a million for you. But once you start going less frequently and she is doing good the anxiety will probably ease, at least it did for me.
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  • fancynewbeeslyfancynewbeesly member
    Unfortunately we are an hour and a half away from the hospital/doctors. So even though there is a support group there, it is not feasible for us to go.

    (and of course when we are IN the hospital, it is never then)

    Locally there is one once a month, but every time they have it we have a conflict. 
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  • fancynewbeeslyfancynewbeesly member
    Thank you so much everyone. I feel better this morning (or slightly) I think her age has a lot to do with it; I think if she was 5 even, she would be able to describe things more correctly for me. I mean she does tell me if something hurts if I ask, but she is ALSO a drama queen. So now she "pretends" to fall and get hurt all the time to get bandaids, kisses, etc.

    And then 3 year olds are finicky people to begin with.

    What I try to do is see if her "offness" lingers for more than one day--I told DH I was going to call the doctors today because on Saturday she was SO tired and huge circles under her eyes. I said if over the weekend she still seemed as tired, I would call. We were busy last week and she didn't have any naps. Well a good nap on Saturday and sleeping well seemed to fix that problem. 
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  • pepperedmothpepperedmoth member
    Hugs. I agree with the online support group for sure. I know they exist. I might seek out the coordinator of the hospital support group and ask for resources because s/he will be connected for sure.
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  • littlestjerrylittlestjerry member
    I would be a wreck too I'm so sorry. I think the advice here was good, just want to say that I think of you guys often. I'll keep sending good thoughts!



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  • angelashlyangelashly member
    ((Hugs)) I'm so sorry you have to deal with this.


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  • credcat7credcat7 member
    no advice, only love and support. :::::big huge hug :::::::::::
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  • MeesheMeeshe member
    My DD is 6 and as I think I've mentioned to you, she was diagnosed with a serious illness last winter (although not cancer).  I think it's totally normal.  My DD has been getting monthly IV treatments and just now we're trying to go 2 months without a recurrence and it has me quietly freaking out.  You sort of settle into your "new normal" and then when it changes it's new stress all over again.  My husband suggested a grown-up weekend out of town, the first time I will be away from her since this all started, and I cried 4 times that day.  Even though she's doing really well right now.  There is always that fear hanging over you.  It's hard enough as a a parent not to overreact and now you have the added worry of this but at the same time, you can't overreact to minor things.  It's not good for anyone.

    I would second trying to find something online, or perhaps on FB.  I stumbled onto a private group on FB for parents of children with my daughter's condition.  Because it's rare, particularly in children, it's hard to find people locally.  I find it helpful to hear from other people dealing with the same concerns, comparing medical advice, etc.  It also give me a place to go with questions.  You might want to try to search around for something like that.  Good luck!
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  • acesupacesup member
    I'm so sorry. I have no advice. I think your anxiety is understandable given the circumstances and I think it sounds like your DH is really great at grounding you and adding some perspective. Do you have any other supports that you can talk to about these anxieties? Is there a support group you can get involved with? I would bet other parents would know exactly what you're feeling and provide support and advice.

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  • acesupacesup member
    I just read the responses and see that there is only one locally that you have had conflicts with. I agree with PPs about trying to find something online.

    This may sound weird- but have you met any other parents through the hospital that you could talk with on the phone? It would be a great way to support each other and make a friend who understands. I don't know if that sounds weird. I just remover that when my sister was going to or was admitted to CHOP for chemo she made friends (she was older than Reese) that she kept in contact with. I don't know if I my parents did because I was young so I don't remember but it was just something I thought of.
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