The Leukemia & Lymphoma Society - Fighting Blood Cancers
13 Replies Last post: Nov 6, 2009 11:09 AM by doublewishmom  
doublewishmom   114 posts since
Aug 11, 2009
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Sep 26, 2009 9:03 AM

So angry with myself....

Just needed to post a message today. I'm driving myself crazy. Micah and Seth were in for check-ups 3 weeks ago and counts were great, no worries. I had about a week of feeling good. And then the worry began. Micah got a bruise on his chest...about the size of a quarter. Panic on my part. Even though, I KNEW his counts were good, it was like I could not help myself. Totally ruined a Sunday and the next few days worrying. Micah had to go in for a CBC 2 weeks later because his ANC had only been 756 when we were at clinic. His counts were awesome. Then all the kids went to the lake with my parents and Seth was riding a trike and flipped over...bruise up a bit. Just one bruise on the back of his calf where the pedal smacked him, a scrape on his back and about three bruises on his shin. Once again, panic on my part. An entire weekend of stress and worry. Those bruises are fading, but he has a couple new ones today.I was having a good morning until I saw him getting dressed and saw the new bruises. They are not big--dime size. on his shins. I feel like my day already went in the crapper.

 

Calgon, take me away! Is anyone else this nuts? It's like my left brain and right brain are fighting...one part of me keeps saying, have faith, he's fine, he's got good energy, no swollen glands, no temp, feels good..... and the other half of my brain is sick with worry about the what-ifs. And of course, the negative side is always much louder than the other!

 

Chime in today if you have time...how many bruises are normal for a six year old boy?

nana   155 posts since
Apr 3, 2009
Currently Being Moderated
1. Sep 26, 2009 9:24 AM in response to: doublewishmom
Re: So angry with myself....

Bruises for a 6 yr old boy.....Well my two son used to be covered in bruises.  We would go to the grocery store and they would come home looking like they got in a fight.(no cancer then) It didn't matter where they were or what we did they got dirty and bruised.  I can't imagine how it would have been if I was dealing with cancer too.  My oldest would get bruised in the wierdest places, on his cheek, elbow....and he was totally healthy.

About the what-ifs I have them all the time with my CK.  Is he limping, do his eyes look strange, is he too tired???? I am learning to let go and trust but it is really difficult.

Hang in there.

Nana

leahamarie   32 posts since
Apr 4, 2009
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2. Sep 26, 2009 9:27 AM in response to: doublewishmom
Re: So angry with myself....

I once pointed out bruises on my son's legs to his onc at a routine clinic visit and he wasn't in the slightest bit worried saying it's normal for kids to have bruises on their legs.  My son was 3 when diagnosed (bruising was not one of his symptoms) and even now at the age of 10, in remission for 7 years, his legs ALWAYS have multiple bruises on them - I truly mean always. I simply don't know what his legs look like without a bruise or 2 or 3 !!!  When I think of all the activity he does, I shouldn't be surprised - he's a typical rough and tumble boy - bike riding, football, running, ice skating, chasing, playing etc etc.  

Elke'smom   204 posts since
Apr 4, 2009
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4. Sep 26, 2009 10:22 AM in response to: doublewishmom
Re: So angry with myself....

My daughter, who is three and in LTM, constantly has bruises -- arms, legs, torso, face even.  But she is three.  And she is also very fair, and bruises easily.  The onc once told me when a bruise was of concern and when it wasn't.  The concern, obviously, is that platelets are low.  They told me that if a bruise looks like a "normal" bruise, don't worry.  What's abnormal?  A bruise that is not flat, but raised. Also, petechiae. 

 

So if the bruises are not flat, or there are petechiae, you may want to check counts.  Otherwise, they're probably just normal bruises.

 

(Note:  my daughter has also had petechiae with platelets that were not dangerously low, so petichiae doesn't always indicate a transfusion is needed also).

 

Hope that helps.

 

And worrying comes with being a cancer parent.  There's just no getting around it. 

 

Ann

mom23   67 posts since
Apr 3, 2009
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5. Sep 26, 2009 2:58 PM in response to: doublewishmom
Re: So angry with myself....

Hey!  Just wanted to add my support on the worry issue.  It is there...no way around it.  I think we try and manage it just like we manage their treatment.  When you said Calgon take me away....I think that is literally a good idea.  We need to do things that help us stay calm and relax....walks/baths/reading/playing board games...whatever it is that helps us relax we should do it.....and find time to do it.  We need to take care of ourselves through this.  For those of us with boys....it is 3.5 years of this.  That is a long, long time to live with this kind of stress.  I have done exactly the same thing as you have described.  My son's only symptom at diagnosis was that he was extremely tired....now when he is tired it runs through my mind...oh no!  Of course then I think....well he did just play 2 hours of basketball and OF COURSE he is tired! Ha!  It is like our minds automatically start gearing up for something bad to happen to them.....when actually they are just having normal things happen to them.  I feel for you today....been there.  It does help a little to know we are not the only ones that feel that way.  Please dont be angry with yourself....I think what you are feeling is normal under these circumstances.  I think of it as a learning curve for myself....I have learned how to manage my son's cancer treatment.....now I am learning to manage all the stress that goes along with it.  Take Care!

Peter'sMum   159 posts since
Apr 3, 2009
Currently Being Moderated
6. Sep 26, 2009 3:00 PM in response to: doublewishmom
Re: So angry with myself....

I can't really comment on the bruises, as Peter has never bruised, even when his platelets were really low. But I did want to comment on the perpetual worrying. I seem to worry about Peter 100% of the time. Even when he is really well and nothing to worry about, I worry about what is coming next, as there always seems to be something going on. Is that crazy or what?

Our clinic still laugh at me for taking Pete in for goose bumps on his legs. His platelets had been heading down and I saw these spots on his legs and thought they were those petechae (?). How's that for a paranoid mum.

Anyway, just wanted to let you know that worrying is pretty normal.

Take care,

Bridget

hero4   180 posts since
Apr 4, 2009
Currently Being Moderated
7. Sep 26, 2009 5:55 PM in response to: doublewishmom
Re: So angry with myself....

Oh bruises, bruises, bruises - I have lots to say about those!!!  My son was diagnosed because of bruises.  He had petechiae and the day of diagnosis developed a dark bruise on his abdomen with a lump under it.  This occurred while he was sleeping on his back in his crib!  He didn't have it before his nap either - yikes!  That was one scary moment.  Needless to say, that was diagnosis day and platelets were at 15,000. 

Now, after being on treatment for 3.5 years and being off for 4.5 months, I've really become a self-proclaimed bruise expert.  I have watched every single bruise he's had in the past 4 years and watched it close.  I've come to realize that, yes, children (especially boys) get bruises and lots of them.  The neurotic side of me does track a bruise from time to time.  After he falls or injures himself, I check the site right away.  If it bruises really ugly really fast, then something may be wrong, but if it bruises quite normally with the dark purple and then by the next day or so, you can see it going to the black/brown colour and then yellow/green, etc. over the course of a few days, then that is totally normal and okay.  I've really come to learn that its not the fact that they GET bruises its how the bruises look and heal that can be an issue.  If they look like a typical bruise and heal like one - no problem.  If they are more dark dark purple and blackish and nasty looking, it may mean they are on the lower side - but again, that's not the rule.

I'd say the best factor would be the healing.  A child with low platelets aren't going to heal their bruises, they will stay that way.  If you see them fading, the body is doing what its supposed to. 

Hang in there!

Austin'sMom   59 posts since
Apr 3, 2009
Currently Being Moderated
8. Sep 28, 2009 1:42 PM in response to: doublewishmom
Re: So angry with myself....

Yeah, the bruises... I am always examining Austin's bruises and he looks right at me and says "Mom, you know I bruise like a summer peach". That usually puts a smile on my face. Austin is always bruised, his arms, his legs, and sometimes other places too. He is just a busy boy. I worry more when they are in unusual places.

StephanieJ   102 posts since
Apr 13, 2009
Currently Being Moderated
9. Sep 28, 2009 8:21 PM in response to: Austin'sMom
Re: So angry with myself....

Scott looks like he's been beaten up right now, its horrible and very scary. Next week is his 6month O/T bloodwork and Im nervous as hell. Scott has always been a very easy bruiser and after monitoring his bloodwork weekly for the last 2 and a half years and knowing that his platelets linger around 200/250 (lower end of normal) I guess I can see why. Yet he does have more than his normal splattering.

Mahima'sdad   3 posts since
Oct 20, 2009
Currently Being Moderated
10. Nov 4, 2009 4:38 PM in response to: doublewishmom
Re: So angry with myself....

Hi there,

I just came across your profile .... and  OH MY GOD!!! My heart goes out to you... having two little kids with ALL at the same time. That's just terrible!! I cant begin to imagine what you guys must be going through. It's hard enough with just one child. May GOD BLESS YOUR KIDS and YOU and your HUSBAND. They'll be fine .. this phase will pass.

Take care

QueenEsMom   2 posts since
Nov 5, 2009
Currently Being Moderated
11. Nov 5, 2009 8:21 PM in response to: doublewishmom
Re: So angry with myself....

Oh my gosh... you have two chidren with ALL??!!!  Bless your heart!  How in the world have you dealt with it X 2?  I have one with ALL and I've turned in to a paranoid wreck.  Again, bless you and your kids.

kimmeebee   266 posts since
Apr 4, 2009
Currently Being Moderated
12. Nov 5, 2009 10:11 PM in response to: doublewishmom
Re: So angry with myself....

I actually don't freak over bruising. Emma presented with major petichiae, so I'm very familiar with that and a normal bruise doesn't worry me. Plus, she's not really rough-and-tumble like some girls and most boys so she doesn't get many bruises.

 

Having said that, I totally understand how you can ruin a whole day worrying about something. I remember a time a few months ago when Emma's lips were pale. She stayed on the borderline on her hemoglobin for months and months so we constantly watched to see if she needed a transfusion. We were having a GREAT day and I obsessed and obsessed over the color of her lips the entire time. Finally we went in (on a Sunday, mind you) for a blood check and her hemoglobin was rather high (for her, at least). I felt like an idiot - both for taking her in for nothing and for letting it ruin an otherwise perfect day.

 

But you know what? If we do NOTHING else right, we do that right. We are really good at knowing what our kids need. 90% of the time, we can tell what's going on better than the doctors could. And then sometimes we get it wrong whether it's because we are stressed, tired, neurotic or downright crazy. At least we're concerned and worried.

 

I wish I knew how to not do this to myself and stay in the moment so we could enjoy life more. But I suck at it. Just know you are not alone.

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