Conference With the Doctors - WARNING: This is Upsetting!

Kirstenmumof3 wrote: I realize that doctors have to tell you everything, every possible thing that could happen. But I was not prepared for what they had to tell us. MDS is very rare in children, it is most often seen in older adults and the elderly. The treatments that they know of are only treatments that have been tested on adults. The mortality rate for an adult with MDS is 40%, the numbers are not known in children. They told us that there are 3 stages of MDS and that Spencer is at stage 3 right now. He is Neutropinic which means that all of his blood counts are low and the risk of infection is very high. These infections or fevers that he could get could be life threatening. There was no mincing of words. Because Spencer is in stage 3 of MDS the chances that this could turn into full blown Leukeamia before the bone marrow transplant is very high. So basically here is the treatment plan for Spencer: to have him discharged from the hospital and either have us stay in the Toronto area (we are on the waiting list for the Ronald McDonald House) or make arrangments for Doctors to care for Spencer in Thunder Bay, so that we could be home with our family and friends. If they can assure me that there are doctors that can care for him in Thunder Bay, then I would love to go home for a little while, but I need to feel comfortable with these arrangments and right now I don't. I'm scared to leave this hospital, scared to be alone with him and the "what if's?" keep popping into my head. Right now they are only treating symptoms as they occur ie. if he were to need a transfussion they would do that, if he were to have a fever they would treat that aggresively with antibiotics. If we stay in Toronto he will see the Doctor in Clinic once a week. Then his only chance is to have a bone marrow transplant and we still do not know how long it will be before we find out if any of us were a match for this. And if none of us are a match than he would be put on the donor registry list. Before the transplant he will need to undergo chemo and radiation therapy, and there are risks involved with this as well. And there are risks with the Transplant itself and even after the transplant they can not gaureentee us that the MDS will not return.

Needless to say I left the conference very upset and worried about Spencer. I am trying to be positive and to believe that he will make it through this. He is a very strong, tough little guy! I just have to believe!

Kaitlin'smom replied: oh hon I will be thinking of him and hope that the treatmens go well and she recovers FAST. I am not sure which form my sitters son had but he is just fine now. I will pry that Spence will be fine as well. Stay strong, and dont hesitiate to PM me if you need to talk, vent or cry.

fashionmumofboys replied: Keeping Spencer in my thoughts and prayers.

I hope all goes well with his treatments.

jcc64 replied: God, Kirstin, there just are no words. I'm so sorry you have to go through this, that anyone has to go through this. The good news is that Leukemia is treatable, and kids have an amazing ability to bounce back from some pretty horrible stuff. My oldest son went to school with a boy who had leukemia, and he was quite sick for the better part of last year. We were all very very worried, and he was in and out of hospital for this or that infection. Eventually, he responded to the treatments, and he is now back in school, just made his bar mitzvah, and living a pretty normal life again.
I am not sure if this is the same variation of the disease as Spencer is dealing with, but I hope you can realize that there is much hope for his recovery. With something as overwhelming as this, I think the only thing you can do is take one day at a time, one crisis at a time.
Be strong Kirstin. You can do this.

luvmykids replied: I can't imagine how scary to have all these things thrown at you, and then you having to make the decision of staying or going home. I will be praying daily for Spencer and you both.

Hillbilly Housewife replied: Oh Kirsten... I wish there was something I could do to help.

I certainly hope that there is a match in your family...

punkeemunkee'smom replied: Kirstin I am so sorry! You and Spencer are in our prayers! Please let me know if there is anything you need-can we send Spencer some cards? Maybe to help Cheer him up? I would be happy to do that-maybe even get our friends involved I know most kids LOVE to get mail...Let me know! Prayers and HOPE to you and your family!

Sarah&Mackenzie replied: I am so sorry that spencer has to be going through this, I will pray for him and your family and keep all of you in my thoughts!!

amymom replied:

What a great idea! Let us know if this is something you want us to do. Continued prayers for Spencer and your whole family.

MamaJAM replied: Poor kiddo. Spencer - and your entire family - continue to be in my thoughts and prayers.

3_call_me_mama replied: Kirsten you will continue to be in my prayers. I would love to send a card to him, as I'm sure any kid loves to get mail. You a re astrong and brave woman and I'm so sorry that you had to recieve such horrible information for the doctors. We will keep praying for you, HUGS and hopes that a higher power will guide you to a decision on what will be best for your family. Stay strong.

C&K*s Mommie replied: Spencer is a strong one, from what you have written about him. Stronger than most adults probably would be with this. Our continued thougts and prayers, and if there is anything at all we can do PM me.

I too, would love to be able to send a card to him.

Prayers for you and your strength in making a decision to have him be in the care of the docs.

A&A'smommy replied: Oh Kirsten I have no words that explain what i want to say to you!!! Put him in Gods hands and he will care for him... I will keep him in my prayers!!! And I agree Spencer is strong and a fighter!!!

MommyToAshley replied:

I can only imagine what you must be feeling right now. I wish I was there to give you a hug in person. We will continue to keep you and Spencer in our prayers. I hope the treatments work and the marrow transplant happens quickly. Spencer is strong and he is a fighter. I am with you on this one, I believe he will be ok.

Please let us know if we can do anything. We all love and care for Spencer and would love to send him something to cheer him up. Would you want to send your address (or Spencer's hospital room if he is going to stay there) to one person here that can give it to anyone that wants to send Spencer something... would that be ok?


Lots of prayers coming your way.

Maddie&EthansMom replied: Spencer remains in my prayers. Stay strong for him, hun.

coasterqueen replied: P&pt's are still with you, Spencer and your family.

jem0622 replied: Just want to send ((((HUGS)))) and strength to you from across the miles.

kit_kats_mom replied: I'm so sorry. I'll be thinking of you and your family. We'd like to send some artwork & cards too. Want to post the addy?

kimberley replied: that is a lot to digest. you and Spencer continue to be in my prayers.

mom21kid2dogs replied: We'll continue to keep Spencer, your family & his caregivers in our prayers. I really hope you can find adequate treatment in Thunder Bay so you all can be at home while fighting the fight. Here's hoping . . . .

luvbug00 replied: sending PT&P by the bundle!

Kirstenmumof3 replied: I have given punkeemunkee'smom my address as she PM'd me and I replied to her message before I read all of your responses. Kimberley also Has my address. Spencer would love to recieve mail and the girls too (Emily and Claudia), this has been tough on them as well.

It looks like we are going to be heading home for a while, probably only a few weeks. But enough time to settle things at home before we come back. After the transplant Spencer and I will be in Toronto for at least 2 months.

You are all so amazing! THANK YOU!

Cece00 replied: I am so sorry to hear about your son. I will keep him in my thoughts.

You know, my husband is a cancer survivor, he had Hodgkins & was treated by St. Jude's. It is so amazing what they can do for childhood cancers these days.

holley79 replied: Kirsten,

I'm sorry the news wasn't better. I hope that you get some positive answers very soon. I will keep Spencer and you in my thoughts and prayers.

aspenblue1 replied: I am so sorry! Your family will be in our prayers. I hope everything goes well with his treatments.

amynicole21 replied: God, Kirsten. I don't even know how you're being so strong about everything! You are an amazing woman. Spencer is so lucky to have you Many thoughts and prayers for his recovery.

moped replied: I am so sorry, please give hugs and kisses to Spencer and your family

gr33n3y3z replied: Kirsten I'm so sorry to hear this
You will all be in our prayers and thoughts
If you need anything contact me

for you and Spencer and family

mummy2girls replied: Oh hun i am so sorry(((HUGS)))) I will keep spencer in my prayers and you guys too!!!!!!!!!! I believe he will pull tghrough this!

jacobsmama replied: Anything at all PM anyone we will help you as much as possible..Support and prayers to all of you!

CantWait replied: I'm so sorry hon. My prayers go out to Spencer and the rest of the family.

~Roo'sMama~ replied: Kirsten I'm so sorry you're going through this. I'll keep praying for Spencer.

CAMSMOM1 replied: Kirstin, you are a remarkable woman! You are so strong and I know that Spencer is going to recover just fine. He has so much love and positive people around him, I know that he will pull through. God never gives us more than we can handle, just cast your cares on him.

I'm praying for a bone marrow match/donor, and a strong & fast recovery for Spencer. And peace and strength for your family.



Ann

My2Beauties replied: I am so sorry to hear all of this news hon. Your whole entire family, especially Spencer are in my thoughts and prayers, I was choked up reading about what the doctors told you beacuse I couldn't fathom being told that. You are a strong, remarkable person and all of you will get through this. Spencer is a tough little guy and ask him to stay strong!

DansMom replied: That is so much to deal with.

CosmetologyMommy replied: He will be in my prayers for sure