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It's Not Good News - Update on


Kirstenmumof3 wrote: I've been gone for 3 days on a conference and I've only been home for 45 minutes. I'm in shock right now, here is what has been happening. I'll start with the minor stuff and work up. On Thursday Emily had an allergic reaction to Amoxicillin and DH had to bring her to the ER. She had a rash all over her arms and her hands were red and swollen. They told him to give her benedryl and then prescribed a different antibiotic. She seems to be doing much better now. We now have to be careful that she is not prescribed anything with Penicillin.

Spencer had a Clinic Visit today and the Head of the Bone Marrow Transplant Team called from Toronto. It's not good. It's heartbreaking. The cimerism test that they did in August to determine how much of Claudia's cells have taken over and how much of Spencers cells are still in the body have grown since the beginning of August. Then they were at 2-3% male cells and now it's gone up to 20%. They are also finding a lot of blasts in his platelets, but cannot say for certain if the AMKL has returned. Spencer and I are heading to Toronto on September 27 where they will do another Bone Marrow Biopsy and Asperiate. We will need to stay in Toronto for the results and then they will have another meeting to discuss the treatment options.

Since Spencer has had 2 Donor Lymphocite Infussions, there are no longer any of Claudia's stem cells left. If Spencer needs to have another Bone Marrow Transplant then DH and Claudia would fly to Toronto and I think they would bring Emily as well. I just couldn't see leaving her behind.

DH has contacted the Interlink Nurse to discuss everything and to arrange for Hotel coverage while we are there. And we need to call Ronald McDonald House 2 days before we leave and have our names put on the list so that we can recieve coverage for the hotel.

I'm in shock, I'm scared and I really don't know what I'm supposed to do.

A&A'smommy replied: hug.gif hug.gif hug.gif OH honey I'm keeping you guys in my P&PT"s!!!! hug.gif hug.gif

b&bsmom replied: I pray for you all every night and day. I don't know how you do it. You have been so strong and it has been one thing after another. I know there is a happy ending to all this and I hope it comes to you very soon. I will contine to pray for you and your family. Please hang on things have got to get better soon. hug.gif hug.gif hug.gif

My3LilMonkeys replied: Oh Kirsten I'm so sorry! hug.gif hug.gif

coasterqueen replied: hug.gif hug.gif hug.gif

mom2my2cuties replied: Gosh, I am so very sorry sad.gif

CantWait replied: I'm so sorry Kristen. Your family and Spencer and in my continued prayers. sad.gif hug.gif hug.gif

sexymomma replied: i'm new here and dont know your story but i'll have your family in my prayers

punkeemunkee'smom replied: Kristen hug.gif There are no words that I can say to ease your pain and fear. Please know that I am praying for you-everyone I have told about Spencer is praying for you hug.gif We love you and are pulling for your son in this fight! God bless you guys-I wish there was more we could do! hug.gif hug.gif hug.gif

redchief replied: I'm so sorry Kirsten. You're already doing everything you should do and more. I just wish for a little while that I could take your burden. hug.gif hug.gif

Kirstenmumof3 replied: bawling.gif Thank You everyone! I don't know what to say anymore. I'm still in shock, I don't think it will fully sink in for a few days. I don't know how to tell Emily and Claudia. I don't know what I will say when I call my parents, I've emailed the rest of my family. I just don't know! bawling.gif

CantWait replied:
Here's a link with a few other links that will explain Spencer's Story.

Nina J replied: hug.gif You, Spencer and the family are in my prayers, as always hug.gif hug.gif hug.gif

mummy2girls replied: (((((BIG HUGS)))))

Oh NO! When i decided to check the boards before bed i didnt think i would see this:( I am so sorry this is happening to you all! I am sending heavy duty prayers your way HUN!!!!!! Spencer is one tough guy! And you Kirsten... I have no idea how you keep finding the strength... You are one tough cookie! And one awesome mom! Please update when you can!!!! I know youa re scared rigth now and are going through alot of emotions and thoughts you wish you are not hearing!!!! Please if you need to talk im here!!!!!

luvmykids replied: hug.gif Kirsten I'm so sorry. Continued thoughts and prayers for all of you.

gr33n3y3z replied: I'm so sorry to hear this
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amynicole21 replied: I'm so sorry, Kirsten. I wish I knew what to do hug.gif sad.gif

MommyToAshley replied: Oh no, I'm so sorry. hug.gif hug.gif hug.gif

Many continued prayers... we're here for you. hug.gif

MoonMama replied: Oh no! sad.gif I am so sorry, You, Spencer, and your family will Continue to be in my thoughts and prayers. hug.gif hug.gif hug.gif

siblingtooolivia replied: PP&Ts hug.gif

Try to remember, God doesn't give you more than you can handle although at times it doesn't seem that way....

C&K*s Mommie replied: We will always be here for you Kirsten. We cannot take your pain/anguish away, but you will continue to stay in our thoughts and prayers.

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luvbug00 replied: P&PT I wish I could find the words to bring you comfort but know your family are always in my prayers. hug.gif hug.gif

Our Lil' Family replied: Oh Kirsten I am so sorry to hear that you came home to bad news. I wish there was more I could do but I'll continue to pray for your whole family!
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booey2 replied: I am at a loss for words. We will continue to pray for your family and offer the hugs and positive thoughts we can. hug.gif hug.gif hug.gif hug.gif hug.gif hug.gif hug.gif hug.gifhug.gif hug.gif hug.gif hug.gif hug.gifhug.gif hug.gif hug.gif
Terri

BAC'sMom replied: hug.gif hug.gif hug.gif hug.gif hug.gif hug.gif hug.gif hug.gif
hug.gif hug.gif hug.gif hug.gif hug.gif hug.gif hug.gif hug.gif
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ashtonsmama replied: I don't know how you stay so strong Kirsten. I'm so sorry he's not doing well, and I'm really sorry that Claudia had that reaction to the amoxicillin, I'm actually allergic as well, I had a huge reaction on a camping trip during high school, when I had mono as well...anyways, I know how scary that is.
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As always, your sweet family is in my prayers.
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Kirstenmumof3 replied: I can't Thank You all enough for all of your prayers and support. The shock is starting to wear off and I'm finding it very difficult to manage. The tears are there, but for some reason I just can't cry. I'm so scared, so worried. There is a pain in my chest that just won't go away and a lump in my throat. I just want to cry, to scream, to yell, but it won't come out.

mckayleesmom replied: I don't know what to say Kirsten. Of course all my prayers and best wishes are going to Spencer, but its sickening to know that that is not enough right now. Im sending Spencer some strength vibes and Im hoping he gets well soon.

skinkybaby replied: hug.gif

Maddie&EthansMom replied: hug.gif hug.gif hug.gif hug.gif

Mommy2Isabella replied: LIke many others have said before...

YOU amaze me, the strength you have for Spencer and your family is AMAZING. You are a WONDERFUL mother and a GREAT woman. It saddens me that you and your family are going through this and it seems like it is bad news after bad news.

You and Your family are in my prayers.

Cece00 replied: I am so sorry to hear that. I am hoping things look up for your family.

Sarah&Mackenzie replied: I'm so sorry hug.gif hug.gif My thoughts and prayers are with your family!! hug.gif

holley79 replied: hug.gif Lot sof positive thoughts and power praying for Spencer and you all.

Adrienne522 replied: hug.gif You are in my prayers.

~Roo'sMama~ replied: hug.gif I'm so sorry Kirsten sleep.gif

jcc64 replied: I'm so sorry, Kirstin. You are doing all that you can. One step at a time at this point, that's all you can do. You are perpetually on my mind. hug.gif

jem0622 replied: I will keep Spencer in my prayers. If they are willing to keep trying then you can only try. Everyday is a blessing.

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My2Beauties replied: hug.gif hug.gif I hope everything turns out ok Kirsten! I am praying for you and Spencer!


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