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Are you kidding?! Now Mom in hospital

Thursday, September 19, 2013

Now? My mother is in the hospital. Yesterday they didn't think she was going to live. Normal red blood cell levels are a 9-10. People die when they drop to 6. Mom's were 5.7. Because of her previous health problems and the number of blood transfusions that she has had means that she has antigen reactions to most blood, so they have to have very specific mixture of blood.

Which they did not have at the hospital. My sister, who lives in Montana, too, was called to race to the hospital to be able to say goodbye. Miraculously, they found some blood that had been sent to the hospital for another patient's surgery who hadn't used it. It wasn't a perfect match, but it was all they had left to try. When they gave her the blood, they had her sign a release saying that she understood that the blood could stop her heart.

Fortunately, it did not. But her body can't use the blood efficiently, so they keep having to give her more. The doctor says her heart and kidneys are so weak that they don't signal her body to make more blood cells so she just plain runs out of blood. I understand that her doctor told her last week that she needed a transfusion and an iron pack, but she was leaving on vacation and didn't want to delay it while waiting for the blood to arrive. She thought she could make it. Instead, she ended up in the hospital on the morning she was supposed to leave.

She is now not in immediate danger, but every blood transfusion damages her heart and kidneys even more, and she now has to go on dialysis. Basically, this is going to kill her in a matter of time. But not today.

I am kind of completely done with this year, and with hospitals.

  
  Member Comments About This Blog Post:

ILLINITEACHER52 9/20/2013 5:27PM

  Hugs and prayers! May they find the right blood to help her keep going!

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TONYATIME 9/20/2013 8:09AM

    I am so sorry your going through so much. My thoughts are with you.

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TATTER3 9/20/2013 6:42AM

    I care.....I'm so sorry you're going through all of this. Try to find spots of quiet time. Prayers.

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JANETRIS 9/19/2013 9:10PM

    Miss G I'm praying for peace and comfort for your family and your Mom. emoticon Jane

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MARALEYNI 9/19/2013 8:43PM

    emoticon

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BLUEJEANS27 9/19/2013 8:02PM

    I am SO sorry for your troubles. I spent 4 years watching over my mother's health before she died, and it surely is a full-time, stressful job. You are a good daughter!

emoticon

Julia

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DOGLADY13 9/19/2013 5:49PM

    No words. Sending comforting karma and prayers. If your recent experiences were part of a storyline, people would say "no way that could happen. It's not believable."

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LEANNROCKS 9/19/2013 4:40PM

    MissG, so sorry about this latest burden you have to carry. Know you are in my prayers.

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HILLSLUG98239 9/19/2013 3:53PM

    Dear God. I hope you start receiving some unqualified good news.

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LUCKYDOGFARM 9/19/2013 3:09PM

    MissG, you and your family are in my thoughts and prayers.

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4DOGNIGHT 9/19/2013 2:12PM

    Your family is definitely in my prayers.

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KNYAGENYA 9/19/2013 2:08PM

    I wish I knew what to say. I also wish I had a magic wand to use to make everything better. I will pray for your mom and light a candle for her when I go to Church. Let me know if there is anything I can do to help. emoticon

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SIMPLELIFE4REAL 9/19/2013 2:07PM

    I'm so sorry to hear about your mom. That is awesome that she was able to pull through this time. You certainly have had a very rough time of it lately.

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NATPLUMMER 9/19/2013 1:41PM

    emoticon

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Chemotherapy and radiation starting today

Thursday, September 12, 2013

Becca and her parents have returned to CHOP. She is going through her first radiation treatment right now.

This morning, her parents had to put a pill in her mouth that is, essentially, poison. Chemotherapy is a carefully concocted potion of chemicals that, incorrectly dosed, could kill her. And they don't know for certain that this is the correct medicine.

Those of us, their friends and family, can only pray and offer our love and support. One of the ways that we are showing that support is to participate in the CureSearch Walk, a fundraiser for children's cancer research, on September 28. So far we have raised over $5000, and have 24 walkers signed up.

If you live in the Cleveland area, then consider walking. It would be wonderful to meet some of my local Sparkers. If not, and if you'd like to do something, consider making a donation to Team Becca.

www.curesearchwalk.org/faf/search/se
archTeamPart.asp?ievent=1062764&lis=1&
kntae1062764=110811D607AE4C7BB09611240
F9DABA6&team=5623885


(Be patient if the page takes a long time to load; it's just like that.)

  
  Member Comments About This Blog Post:

DOTTIEJANE1 9/14/2013 10:28AM

    Prayers for all involved in Becca's care .

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TATTER3 9/13/2013 6:23AM

    Wish I were there! Prayers

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NANA2PRINCESSES 9/13/2013 6:16AM

    Prayers for Becca, her family, and everyone dealing with this terrible disease.

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JANETRIS 9/12/2013 7:40PM

    prayers and hugs for Becca and the family emoticon emoticon

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LIALEEPANTHER 9/12/2013 4:10PM

    Sending wishes and hopes to everybody suffering like this... and hugs to you for supporting Becca... :(

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RUNNING-LIFE 9/12/2013 3:25PM

    You are all in my prayers emoticon

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SIMPLELIFE4REAL 9/12/2013 3:04PM

    I like to think of my chemo as something that will save my life. Hopefully, Becca's chemo will do the same for her.

Hugs,
Kay

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PAPAMIKIE 9/12/2013 2:51PM

    My prayers and thoughts

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MSANITAL 9/12/2013 2:14PM

    I am not in the area, but I will dedicate my walk tomorrow to her.. sending prayers as well,

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NATPLUMMER 9/12/2013 1:22PM

    emoticon

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SHARONSPARKLE 9/12/2013 12:20PM

    My heart is heavy - no child should have to suffer through such a thing! I will pray for all of you, especially Becca.

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LINOVER 9/12/2013 12:17PM

    I will pray for Becca and your family that everything goes well!

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LUCKYDOGFARM 9/12/2013 12:13PM

    Praying for Becca and her family and medical team too!

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HILLSLUG98239 9/12/2013 11:52AM

    I wish you peace and courage.

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STUDLEEJOE 9/12/2013 11:47AM

    I will be praying for all of you. I watched my wife go thru chemo 5 years ago due to stage 4 indometrial cancer. I am happy to say that she is now 5 years ned. That means no evidence of disease. Tell them to keep going strong.

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KNYAGENYA 9/12/2013 11:32AM

    emoticon I'll light a candle when I go to Church. I wish I could participate in the walk but I will be out of town. If there are any others let me know and I will make sure that I am there.

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NICOLED40 9/12/2013 11:29AM

    Many prayers and blessings for you and your family & friends. I can't even imagine what you all must be going through. God bless you all! emoticon

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RICHILA 9/12/2013 11:13AM

    My favorite prayer is Hasidic:
"Lord, I know you will help, but help me Lord until you help." emoticon

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JBALDWIN29 9/12/2013 11:08AM

  Prayers being sent

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MYUTMOST4HIM 9/12/2013 11:05AM

    Prayers are with all of you
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She's just a baby

Wednesday, September 04, 2013

Tomorrow and Thursday evenings I will be with our friends, as they try to make something approximating the Jewish high holidays.

At these events, I will do my damnedest to keep my self together.

But.

I am seething with rage and impotence. How bad is this? Imagine your worst nightmare. Your worst loss. The worst ache of your heart.

You are still in the junior league.

But don't feel bad about me. I'm just the beloved auntie. My presence provides assistance to the parents, gives that amazing, stubborn, willful beast of a child just one more target for her defiance.

And I'm good being that. Cuddle me only as a last resort, tease me in the meantime, drive me crazy.

But please, Becca, oh please. Keep being here to exasperate me. Please keep being that contrary little thug who loves best on her own terms.

You're a thug. Please, for all of us, keep being a thug.

I can't imagine life without you.

  
  Member Comments About This Blog Post:

SKIRNIR 9/12/2013 6:31PM

    Had to read a few posts I had missed when I saw the most recent one. I have to say, I do love how you worded this. Made me want to cry and laugh at the same time. I trully hope that Becca is around a long time to torture you and hopefully others who get to meet her in her long life.

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DOGLADY13 9/10/2013 8:21PM

    I know this is late. I don't know how I missed this.

Your pain is palpable. I wish there was a way to ease your pain, but I can't.

Becca is a wonderful, beautiful, beloved child. Keep loving her. Keep that positive, loving, fierceness present in her life.

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LUCKYDOGFARM 9/4/2013 5:33PM

    emoticon

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SIMPLELIFE4REAL 9/4/2013 11:44AM

    Being a thug might work to her advantage....it sounds like she is a fiesty fighter!

Hugs,
Kay

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NATPLUMMER 9/4/2013 11:06AM

    emoticon

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Becca: home for a few days

Sunday, September 01, 2013

For those of you following Becca's story, the family arrived home for a few days visit before they have to return to CHOP to begin intense radiation therapy. I organized a potluck housewarming party at their house yesterday and at least 60 people showed up. Becca loved seeing all her friends, and her teachers came as well. It was heartwarming to see the outpouring of love.

Other than being a little overtired and very cautious with her body because of the ports, Becca was her usual funny, stubborn self. She has a very puckish personality and is likely to give you a giant hug--unless you ask for it. Then, no way. We had a long and giggly conversation about the time she threw up on me--she thought that was hysterical.

Her parents were glad of so many friends to hug and the support. As the evening ended and they put the kids to bed, DH, another friend, and I cleaned the kitchen and got the house back into pre-party shape for them--I didn't want any of the burden to fall on them.

I will see them again on Wednesday and Thursday nights, when it will be quieter and we can relax and talk. But I think it was good for them and good for the community of people who are supporting them to have a day where we could all come together.

  
  Member Comments About This Blog Post:

LEANNROCKS 9/3/2013 7:51AM

    Thanks for sharing this lovely story.

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DOGLADY13 9/3/2013 6:49AM

    What a lovely gift. I hope all of you get some rest and enjoy each other's company.

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LUCKYDOGFARM 9/2/2013 9:44PM

    Sounds like a wonderful time was had by all! Becca and her family are blessed to have you for a friend.


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TOWHEE 9/1/2013 11:46PM

    You gave Becca and her family the greatest gift in the world - friends, laughter, and supporters. I'm sure that she will remember that day when she has to endure the procedures ahead of her.

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TATTER3 9/1/2013 9:40PM

    Be blessed.

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SIMPLELIFE4REAL 9/1/2013 9:33PM

    That's nice! I'm glad Becky enjoyed herself so much. I'm sure her parents appreciated seeing so much support. It helps so much!

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THOMS1 9/1/2013 5:07PM

    emoticon You are such a good and giving person. emoticon

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KNYAGENYA 9/1/2013 3:30PM

    That was so thoughtful of you.

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CASSIOEPIA 9/1/2013 3:02PM

    That is so nice of you to do that for Becca and her family. What a great friend.

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NATPLUMMER 9/1/2013 2:58PM

    emoticon

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VLINDER2014 9/1/2013 1:20PM

    What is awesome .. you showed them all the love and support they have.. We often know it .. but to see it and have it reinforced when times are about to get really hard.. somehow might make things a little easier to manage...



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OPTIMIST1948 9/1/2013 11:34AM

    Lovely times before hard times. Thank you for the update.

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How to talk to people who are hurting

Monday, August 26, 2013

When confronted with someone's grief or pain, someone's terror for a sick child or other loved one, someone's own illness, it is common and understandable to want to ameliorate that grief or pain or terror by cheering them up.

STOP DOING THAT.

When you tell a person that it's happening for a reason, or that it's all going to be okay, or that God has a plan, you are putting a burden on an already overloaded person. Your interaction includes an expectation of a response, and that response contains an expectation of feeling better. You may not realize that you are doing this, but trying to cheer someone up by minimizing their grief or pain carries the message that says, "You should stop feeling the way you are feeling and feel better now."

That's trivializing what the person is going through. And creating an expectation that they must either respond to or silently try to ignore. In trying to help, you are making it worse.

So what should you say? Some version of "I am so sorry. This is terrible." It carries no expectation that your words will magically lighten their burden; it just acknowledges their pain. By acknowledging their pain, and not putting an expectation upon them to feel less of it, you are allowing them the choice to share more if they wish. If it's someone you know well, they might want to talk about it. If they don't, it's not a reflection on you.

  
  Member Comments About This Blog Post:

JANETRIS 8/27/2013 5:21PM

    Thanks for that blog. Well said... emoticon

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CASSIOEPIA 8/27/2013 9:19AM

    emoticon

I was thinking about you several times yesterday, with the back-to-school activities going on.

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MSANITAL 8/27/2013 9:00AM

    You are right.. and what other said are right.. I think when someone says something it's because they really don't know what to day and they feel they need to offer some type of help, and why their intentions where not to make you mad or feel worse they may of been un prepared or educated in the fact to help someone in need so yea a profession who deals with this everyday said it right they listen.. and be quite..

but I know for me.. if I was talking and crying and all the person did was listen to me.. heck I could do that to a wall, and not get feed back.. sometimes I like feed back and weed out the bad advice and take the good.

Hugs to you, your in my thoughts and prayers..



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OPTIMIST1948 8/26/2013 8:15PM

    Truth.

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CRAZYNDNCOOK 8/26/2013 7:56PM

    Unless you have been through it, it is hard to know what to say to someone. I heard so many hurtful things and even hear them 17 years later. I learned over the years that the people that helped me the most are the ones that didn't say something at all. They let me talk, or just sat there if I didn't want to talk and were patient enough to let me cry while I talked. Sometimes laughing does lift some of the sadness. I was able to talk about some of the fun things that I did with my son, things that made me smile or laugh and being able to talk about them helped my heart remember that there was happiness with him too. That his death wasn't the only thing in his life.

Sometimes I just with there was a class thought on this subject. Because a person that feels they don't know what to say are the ones that say the things that hurt the most and they don't know how much it hurts. We are all going to be in that situation at one time or another where we have a family member or a friend that is very ill or a sudden death in the family, or now days where we are chatting with people from all over the world and we reach out for kind words but find ourselves upset because some of their words hurt. But I guess people don't really want to talk about illness or death until it happens and then they are stuck with nothing to say.

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CBLENS 8/26/2013 5:12PM

    A a grief counselor, we listen and let the client lead the talk, with my young widow/ers group they help one another in ways that others can not.

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KNYAGENYA 8/26/2013 2:59PM

    emoticon

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JUST2OFUS 8/26/2013 2:42PM

    My you find peace. You are in great pain just now; know others do care. Let the tears come, as they must. Then I wish you peace in your own way and in your own time.

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SIMPLELIFE4REAL 8/26/2013 1:02PM

    I couldn't agree with you more. I have been amazed at some of the thoughtlessly hurtful things people have said to me trying to cheer me up.

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HILLSLUG98239 8/26/2013 12:44PM

    Thank you for your honesty and your courage.

When my first husband died, there were people - friends - I never heard from again. I think they were so paralyzed by not knowing what to say they decided to say nothing. And then their absence made them feel guilty, so they avoided me all together.

The real winners? "What can I do to help?' - which is exactly what you did when you got that horrible phone call. It's much more direct than "Let me know if you need anything."

And yes, "I am so sorry" and "I don't know what to say" are probably the best thing to say. We've all suffered losses and tragedies, but no one person's situation will mirror another's. I really hated "I know what you're going through." Really? How can you know that? You may have suffered a horrible loss, but unless you've lost a loved one to a violent crime, you really have no idea what I'm feeling. And in your situation, unless someone has seen an innocent child they love suffer from an inexplicable and capricious disease, they have no idea what you're feeling. I know people meant well, but I just hated that line. I wanted to scream every time some said it.

After Mike I died, there were times I made no effort to hide my sorrow. I'd hear a song lyric that would rip my heart open and I would cry, regardless of the situation. Did it make people uncomfortable? Undoubtedly. Did I care? Not so much. We are a social animal. Caring for each other is part of our make-up. We must expect to feel some discomfort in carrying out that mission.

So, thank you for sharing. Thank you for not hiding your pain and your rage. Thank you for letting us, your on-line tribe, share some of your burden. Thank you for trusting us with that.

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UKMOM638 8/26/2013 12:29PM

    I agree with you....any feel the same way... although I don't think most people do this on purpose it is hard to hear those words when you are grieving... emoticon

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NATPLUMMER 8/26/2013 10:34AM

    emoticon Well said.

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4DOGNIGHT 8/26/2013 10:33AM

    It is difficult to know what to say when someone is grieving. I'm sorry just doesn't seem appropriate sometimes. My mother in law died recently and people would say I'm sorry. But really, for my husband and I, her passing was a welcome relief in some ways because she had been ill for so long and was now at peace. I miss her but at the time, I was grateful for the life she had and that she was at rest finally. People would look at me funny when I would say, its okay, it was her time. I just walked into her room today and I felt her presence very strongly. We have guests coming that have to stay in that room. I'm rambling, but your note has got me thinking. We are all thinking of Becca and her family and it is hard to know what to say or do. God comforts me in a special way but my way is not necessarily your way. At any rate, we are there for you.

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AMARILYNH 8/26/2013 10:10AM

    emoticon Excellent advice! Acknowledging the pain someone is in is powerful - I believe its important to do. Another thing is in the days or weeks following a tragic event, I find it often opens conversation if I ask that person if they are sleeping ok. OFTEN the answer is no, and by understanding this (it is a common occurrence) I think we offer validity to their suffering. Letting them talk to us about their feelings or just about the event can be helpful too - I used to worry that I didn't have the right words to say, but now I realize I don't NEED the right words - being there to listen to them and offer comfort is enough,

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SKIRNIR 8/26/2013 10:07AM

    I have to agree with you. When I cry, my husband tries to change the subject and make me laugh and most times it makes me so mad. Even when he makes me laugh, it still doesn't really help in the end. The reason I was crying usually comes right back as soon as I think about it again.

Any news on Becca?

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