Search Results (Searched for: )

  • snowgoose
26 Jan 2010 21:01
[size=#]Hi Sandi,

Another question ;) .......................

Is it possible to flick a switch, and display the time at the top of the page like before? It was good for us non- Americans to be able to see the time over there and the current time in country of origin.

Vanessa :huh:
[/size]
  • Carl
26 Jan 2010 20:55
My eulogy to my Mother was created by Carl
Eulogy for Gussie Pauline Calhoun

by Carl Wilson



My sisters - Paula, Shirley, and Patricia - graciously asked me to speak today on their behalf and that of our departed brother, Michael. I realize that they would speak of different memories and perspectives, but so would we all.

Our Mom, or Mother - as I called her, will be missed greatly, even as her memories live on within us, and her love continues in our hearts and in the lives of our family. I find myself wanting to tell her about things that are happening - like talking to all four of my children by phone since her death approached - one of which I hadn't heard from in several years! And my oldest daughter, Rebecca, flew out from California for the funeral.

One of my sons, Brian, whose birthday was January 18th, remarked: "I do miss the card my Grandmother always sent to me with every word underlined at least once. She is so special to me. But I will look to fond memories of her and [me] together, and smile."

Rebecca, one of my daughters, added: "I ditto ... Brian's comment about realizing that we won't be getting the birthday [and] Christmas cards with just about every word underlined: the more underlines, the more significant the word - funny how it's the little things you remember most." Maybe it's because the little things make up the solid structure that we can depend on - that show the nature of the person we know and love.

Frank, my niece, Charity's Dad, and my good friend, said of Mother: "Great woman.... We're gonna miss your sweet voice, gentle smile, and always, kind words."

In fact, over and over, I have heard people speak glowingly of her smile and kindness, and how she made each person feel special.

Veronica, another friend, characterized Mother as - "sooooo beautiful. Inside and out. Thank you for gracing us with your presence, m'lady." Even people on Facebook, who did not know my Mother, have commented on her beauty!


My Mother was named Gussie Pauline Brinkley at birth. I think that her Mother, Pauline Brinkley, passed on to all her daughters the legacy of gracious hospitality and kindness - as well as what my wife, Marge, calls "Steel Magnolia" toughness.

But Mother, in my opinion, had an especially soft heart for those she loved. In our family, we have a great many stories that are told with loving affection. One of the most poignant story was about my Mother and her Mother, whom I called Ma. On a trip to town, each child was allowed to choose a candy bar. Upon reaching home where it would be time to enjoy their candy, my Mother - whom I'll call Gussie - kept insisting that Ma take her Baby Ruth candy bar. Gussie simply was not taking no for an answer. Finally Ma gave in, and began to eat the candy bar. At that point, the reality of what she had done must have got the better of Gussie, because the family accounts say that she went outside and stood by the house, crying.

I can recall a trip that Mother and I made from the West Coast on a greyhound bus, when I was about seven years old, I think. I was getting car sick, and Mother insisted that the driver pull the bus over, so that I could throw up outside the bus. As the trip continued, I know money must have been almost nonexistent, because I cannot remember Mother eating, at all. But she would buy me something to eat during rest stops.

I won't go into detail about incidents and situations as my siblings and I were growing up that brought Mother sadness and tears. One reason is that the incidents that I remember the most might be different than Paula, Mike, Shirley, and Patricia would recall. Another reason is that the times of sadness and tears did not defeat my Mother - nor us!

One move that all Gussie's children agree was the best thing for all of us was when, with the help of my Uncle Jack, we moved into the house built by her parents, Pauline and Lonnie Brinkley. Not only did we get to attend school where Gussie and her brothers and sisters went, at Faceville Consolidated School, but we also were blessed by the relationships at Franklin Baptist Church, always special to the family.

Later, Gussie and all of her children moved elsewhere. And our family grew. We began to sense a growing desire to return to our roots. First, Patricia returned. Then Paula, with the help of Jim, Patricia, Mack, and many others, restored the home that Pauline and Lonnie built. And then, finally, Paula and Mother moved in.

While it is true that Mother's health had already begun to deteriorate, there was a happiness and joy that I think needs to be emphasized. Marge remarked that Mother's joy was in seeing her children and family settled and happy.

We've had family reunions, told stories, laughed, reminisced, sang, gone to Homecoming at Franklin Church, reunions at Faceville Consolidated School, held and watched babies and toddlers, and fondly taken many family photos while gifts were exchanged. Marge says you don't really "own" your gift until a photo is taken of you holding your gift with the giver staning beside you.

Anyone who saw our Mother's face would have known that she was happy and joyous.

And I'm so glad that this is so. Certainly she worked hard and had many rough moments in her life. But you know what? We were not poor in heart and spirit. We may have eaten dried lima beans when Mother's waitressing tips weren't that good, but we never starved and we valued what we had. And we learned to bond together as a family.

I want to say this to you, Mother, because my granddaugher, Savannah, and I think you may have entreated God for special permission to keep watch over your family:

I pledge to you, Mother, that we will continue to bond together as a family and we will
never forget to show kindness to others, as you have taught us. Thank you for not only
being the beautiful person that you are - inside and out, but also for all that you've done
for us, and for so many. I pray that God richly blesses you for the kind spirit that you
are, and that your gentle smile comfort our hearts, day and night.

[delivered at Mother's funeral, Monday, January 25, 2010. She died on January 22, 2010, at 8:19 a.m.]
  • dots
26 Jan 2010 20:27
I'm so sorry he's at 16. My son's symptoms are deceptive. He can bruise and get patches of petechiae and I'll take him to the doc and he's at 35 or 40. It's clear that he'll drop and then jump back up and we miss the lower count, so he doesn't get treated that day. He's also been at 15k without any symptoms at all.

Unfortunately, his lowered count often presents these days as a long nosebleed; at least that's usually a real --but quite scary sometimes -- indication.

The bottom line is that at this point, six and a half years into this adventure (he'll be nine next month), we never know what his count is but always assume it's not much higher than 40. As a result, he plays no contact sports (baseball, soccer [football]), and doesn't even attempt gymnastics (risk of falling off equipment). He ice skates slowly, often wearing his bike helmet. He swims a bit, and I'd like him to learn to play tennis this year.

All this is to say that his activities are mostly restricted, but we let him run around when we think his count is around 40. The problem is that we never really know just what it is. Here again is the wish for the home plateletometer so we could find out without going to the doctor.
  • Kim
26 Jan 2010 19:59
Replied by Kim on topic Steve a/k/a Gort (moved from old Forum)
Thanks for the update, I'm so glad to hear he's coming along and I hope the improvement continues. Please keep us posted.
  • snowgoose
26 Jan 2010 19:25
Replied by snowgoose on topic Does this new forum have a Chat Room option?
Thanks Sandi,

I am so glad that you are still our administrator/moderator, when the board changed, that was my first thought, will Sandi still be the one?? Thank you Sandi for all you do.

Have you had a must have chocolate crisis yet, and tried the Tiramisu??

Vanessa :silly: :P
  • tacmom
26 Jan 2010 19:11
I'm sorry to see that Dougie's count have dropped. It is good that you have some indicator to tell when you feel like he has dropped. I can't always tell with Caitlin but she doesn't get petechaie unless she is below 30. She bruises at any count so that is never a good indicator for her. I know her count is low right now based on the fact that she has petechaie inside her mouth. Someone once told me that if you can see bruising/petechaie in their mouth, that gives you an idea of what their organs might look like inside their body. Our hematologist always treats when they have wet purpura. We re still waiting on insurance to approve the Rituxan for Caitlin and it doesn't look like we will have an answer this week. Glad that he gets to go on the adventure camp. I've always gone with Caitlin when they have cheer camps or any activity camps so that I can be there to get Caitlin care if necessary.
  • Sandi
26 Jan 2010 19:06
Replied by Sandi on topic Okay, what is karma and how do I get some
I wasn't able to remove it, but I did tell the one who could. I don't have the same options to fix things like I did before, so it takes longer to address some of the problems...relay system.
  • Sandi
26 Jan 2010 19:01
Replied by Sandi on topic differing thresholds for being alarmed
Norita:

My first two thoughts were:

1) try a low dose of Prednisone - which I see you are already doing. It might bump you up to at least 50 where you would be safer. You shouldn't have many side effects on that.

2) I would trust myself more. How comfortable have you been in the past with that count? If you were not alarmed before and felt okay, why be alarmed now? You know your body better than any one.
  • Siliconvalleygirl
26 Jan 2010 18:56
Replied by Siliconvalleygirl on topic Okay, what is karma and how do I get some
Yeah, was not a fan of the Karma. :)
  • Sandi
26 Jan 2010 18:55
I don't know, Vanessa. I'll see if I can find out for you.
  • Siliconvalleygirl
26 Jan 2010 17:58
Replied by Siliconvalleygirl on topic Steve a/k/a Gort (moved from old Forum)
Thank you for the update - I've been hoping to hear something positive, and this at least is positive.

I'll continue to pray for Steve and his family.

- Leslie
  • norita
26 Jan 2010 17:05
Replied by norita on topic differing thresholds for being alarmed
Hi

Thanks to both for very useful comments and support. Yes, I am in email contact with my docs in the UK, and actually they are in contact with the docs here. Just writing to them this evening (the ones in the UK), they are not desperately worried about my count in the short term because a) I've had this count for a while with no bleeding except a few bruises and it is symptoms they look for; b) they know I have access to very good and immediate attention at the hospital 3 metro stops away should I need it; c) I am getting regular blood tests. But to ease my concerns they have suggested 20mg pred with the aim of getting a small rise in platelets while I am out here, and then review when I get back.
Interesting what you say about suddenly dropping 10. I hadn't thought about that.
I'm not particularly comfortable with a count of 10, especially not in the longer term. I was trying to see if the count would inch up by itself, even if just a little. If I could get a default count of 25+, I'd be a very happy girl...
  • alisonp
26 Jan 2010 16:44
Replied by alisonp on topic differing thresholds for being alarmed
Hi Norita

Based on my short 8 months experience of my son's ITP, I would say that UK doctors seem a lot more reluctant to treat low counts. My son's consultant says that he treats symptoms and not counts. If the symptoms are insignificant (just bruising and petichiae) then he wouldn't treat. My son has been down to 1 on a couple of occasions without treatment.

The experiences I read about on this board seem to be based more on treatment being based on a number - say under 20 or some other figure. That would be quite different to the way my son's doctor approaches it, and sounds different to the way your normal doctor operates. I hope that you reach some kind of a compromise with your spanish doctor anyway which doesn't panic either of you too much!

Ali :)
  • alisonp
26 Jan 2010 16:31
Hi Deanna

Yep, I reckon my hair will be well grey by the end of next week!

I don't really know what is common over here because I have never met any other kids with ITP, and the UK ITP site doesn't have a great discussion site like this. However, I get the impression that watch and wait is used far more frequently over here. I am quite happy with it as an approach because all the treatments have some sort of potential risks. The paediatric haemotologist that Dougie sees in Manchester Childrens' Hospital says he treats symptoms and not counts. Dougie has got down to 1 on a couple of occasions now without symptoms more serious than bruising and petichiae (no serious bleeding), so he doesn't recommend treating him. He did have a couple of courses of prednisolone from the local hospital, but they are very jumpy! The only problem from my point of view is that Dougie is restricted from sports when his count is under about 30, which he finds very annoying. He is a very sporty kid normally.

I hope that Devyn isn't too bad when you get to the hospital. I;m finding the up and down part of ITP quite difficult to deal with, so I don't know how you cope when it comes back after a long break. The consultants secretary today said that the only predictable part of ITP was its unpredictability, which I think I need etching firmly on my brain!

Ali :)
  • lucidawn
26 Jan 2010 16:28
Ali,
I have not read through everyone's replies yet, but just wanted to let you know how it is with us. At first Tim was very readable, but over time he became more unpredictable. We can never know what his counts are by symptoms. The boy hardly has bruise on his body and he is at 1k most of the time! Sometimes he can have some bruises and be higher. Its not predictable with him. I think its like that with some kids, at least. As time goes on, their bodies change, they adjust to having low platelets. They bruise more easily at times, and less easily at times, and you just don't know what their count is by symptoms. You just have to know if they are low, keep them out of danger. Knowing Tim is unpredictable and can crash one day or week to the next, he is not allowed ever to do contact sports unless he is in a good remission, and even then I am cautious.
  • dbishop
26 Jan 2010 15:42
Hi Ali,

I'm happy to hear that Dougie gets to go to the adventure camp, although as you said it will be a week of worry for you. Best wishes for him having a safe and fun time.

I'm really not looking forward to the visit to McMaster tomorrow, as i know his counts have dropped....i'm hoping that they have at least stayed above the 20,000 mark and we don't have to treat...but with this disorder you never really know. I'm trying to stay positive but when we get the results and they have dropped it's so hard to not get discouraged...but we pray every night for platelets so maybe someone up there will hear us :)

Is it common for ITP to not be treated where your from?

Deanna
  • tortie
26 Jan 2010 14:49
Replied by tortie on topic Steve a/k/a Gort (moved from old Forum)
That recent news has given me some relief. I feel more positive that he'll be back soon. Wow, what a tough situation.
I hope this next treatment will do it.

I'll keep thinking positive for you Steve, stay tough!

Michelle
  • tortie
26 Jan 2010 14:30
Replied by tortie on topic Best count in long time
great counts, even for 3 weeks, keep positive.

Michelle
  • tortie
26 Jan 2010 14:22
Replied by tortie on topic differing thresholds for being alarmed
Hi Norita, well I've been trying to get use to counts around the 10k range and I struggle with this question. If I was travelling I think I would want the option of prednisone available if needed if there are no other reasonable options such as anti-D etc. I know pred would help and work quickly, for me, if needed. Are you getting your blood work followed up there? If you have access to treatment there or medical intervention, then that minimizes the worries. I've had 4 hema's now. Most of them didn't get too concerned unless I was having bleeding symptoms. 1 hema wanted to treat with counts below 15k, 1 hema below 10k. Now I have another new hema that would prefer to get my counts at 30k with treatment. How he explained it to me is that he's aware that our counts can drop by 10k spontaniously. If you only have 10k there is more risk. Sure lots of ITPers live with these counts and do their best to be comfortable with it.

I think this is a tough question for many of us. It's almost as bad as the question of splenectomy. You should have a plan B or option B if something happens.

Michelle
  • sailorsocks67
26 Jan 2010 13:47
Replied by sailorsocks67 on topic colonoscopy
Mine was done with counts at 60,000.Removed a couple of polyps. Doc had no worries. But that was 10 years ago.Hope it helps.
  • sailorsocks67
26 Jan 2010 13:36
Replied by sailorsocks67 on topic Steve a/k/a Gort (moved from old Forum)
This is sooo happy/sad. I can't imagine the horror he must be feeling at not being able to move, or speak. Yet he has awaken. So sad right now.. :(
26 Jan 2010 12:45
Norita someone will respond who knows more than I do.

I just wanted to say we moved to Tokyo very shortly after my diagnosis and I was on prednsione - what a great hematologist I had there!! Then we moved to Hong Kong, still on prednisone - I liked my hematologist as a person but she would scare the heck out of me because she would panic with any little drop in my count so I really didn't trust her much as a hematologist. Almost every week or two I could count on her going into a panic and then me going into a panic because she did.

I remember a few times writing my hematologist in the States - no email at that time.

However I did not have a count as low as yours - I myself wouldn't be comfortable with an 11k, but that's me.

How much longer are you in Spain. Do you trust your hematologist there? If not do you think your hematologist there would get in touch with your UK hematologist via email?

Can you email your hematologist in the UK?
  • norita
26 Jan 2010 10:40
hi
my doctors in the uk have been ok with me doing the watch and wait, even though my counts have been bouncing just above 10 (and no higher than 25) since last Sept (despite two more attempts at anti-D). I bruise easily but generally not spontaneously, and I got one small blood blister in the mouth last week (but right by my back teeth, which I know cause ulcers from rubbing against the skin). But nothing else. So I have been happy to wait and see if my count can get a bit higher.
The trouble is that I am in Spain for work for 3 months, and being followed by a haematologist here who panicked at my count of 11 this morning, and is insisting I go back on steroids (or start something else, e.g. rituximab), saying that I am endangering myself by walking around with a count that low.
I'm not sure what to do. I hate steroids and wanted to avoid them at all costs. Equally, I did not want to try new treatments away from home.
I am wondering if the Spanish doctor is being alarmist. My doctors in the UK say they are happy to treat the symptoms rather than the count (though they're not happy with a count below 10 for very long). But I got a bit scared by this doctor here...
Is the lack of wet symptoms at a low count really significant, or am I taking risks?
  • alisonp
26 Jan 2010 10:17
Consultant says Dougie should be OK to go on his trip if he is reasonably careful and if the teachers are aware of his count. So I will take him back at the weekend to get another count and assuming it is there/thereabouts/higher, then he is going! No doubt I will worry the whole week , but I am pleased he can go.

I can breathe a sigh of relief now, because I am no longer anticipating the very cross kid that I know would have appeared if I said he couldn't go....

Ali
  • alisonp
26 Jan 2010 07:35
I am just posting here to vent my frustration about the conversation I just had with our local hospital.

They phoned the children's hospital this morning to ask whether it was OK for Dougie to go on his school trip but forgot all the stuff about what sort of trip it was! So the answer that came back was yes, thats OK. Hang on, I said, how is it OK for him to be doing that adventure stuff if he is banned from playing football with those counts?

So now, they have phoned up again with the right question, and apparantly the consultant's secretary took a sharp intake of breath when she heard what he was supposed to be doing!!!I am still waiting for a call back from the consultant or his secretary.

And even worse, we are back on monthly drs appointments!!

GRRRR

Ali

P.S. Karen and Deanna, I hope that Jordan and Devyn are OK. Deanna, I am particularly pleased that you recognise the "dirty legs" syndrome, because I have been thinking its just me too - greyish bruises, but way under the skin so that they don't really look like bruises?
  • dots
26 Jan 2010 07:12
Replied by dots on topic liam is starting school
It's okay to seem like a freaked-out protective mother, particularly if you're freaking out. ;)

My son seems to stabilize at about 35k, with drops low enough to cause big bruises and petechiae. We get him to the doc, and he's not low enough for IVIG because his count's come back up by the time we get him there. This is our current cycle. At 35k I still don't feel he should participate in gym, but since we don't know his count from minute to minute, I've had to get used to the idea that I can't keep him wrapped up in bubblewrap.

And so far, he's been okay.
  • Angeleyes75
26 Jan 2010 06:58
Replied by Angeleyes75 on topic liam is starting school
Hi
My son was dx in oct 08 we had quite low counts for the first six months also having ivig at least once a month in that time. He was on steriods for a period of time but was stop due to not altering his levels only his mood. At the moment we have been hovering around the 50-60 although we have had a few lower drops in between but nothing that has required treatment. We just recently moved to country area so had to start a new child care centre, printing the booklets off this site has helped them understand more. He is a very active 3 yr that has no fear and would do anything to ride his brothers dirt bike. There are days when I get really worried especially if I see an increase in his bruising, but we just make sure on those days we do a less physical activity normally go for a swim. His child care also plans around him on days when we suspect he might be low they make sure when they have outside playtime they give him quite activities that he enjoys. Helps to distract him from the climbing equipment but doesn't make him feel left out.

As someone else said it's a mothers instinct to worry about her children.
Your only a phone call away if needed.
Michelle
  • Angel85
26 Jan 2010 04:47
Replied by Angel85 on topic Happy Australia Day
Cool, I'll see if i can make it there tonight, if not tonight, i'll be there next week, and yeah it is the right link. I've registered with the same name Angel85.
  • snowgoose
26 Jan 2010 03:24
Replied by snowgoose on topic Happy Australia Day
Hi Lauren,

Just got an email from a couple of the regulars, who wont be able to chat tonight, so not sure how many will be there, but I will pop in and look for you in case you are able to make it. It should be back to normal next week, I would think.

Vnaessa :silly:
  • snowgoose
26 Jan 2010 02:50
Hi,

Does the new forum have the option of a chat room? It would be great if it did, as we Aussies have been using the UK ITP chat room, it would be great to come"home"! If we could use the PDSA site, it would be easier for new chatters to find us and join in.

Vanessa :)
Displaying 72001 - 72030 out of 72224 results.