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Leukemia


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#21 MiaScraps

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Posted 20 March 2015 - 12:20 AM

Hi Mellisa! My you have your hands full! So glad to hear your husband recovered quickly. That was scary! Really scary. I hope he is carrying around a water bottle from now on!

I am sorry to hear about your nephew. Such a long hard battle. Treatments always changing due to his situation at the time. It's like a roller coaster ride. Tiring for all. Worrisome. Ack....I am such a worrier for all! I hope you are finding fun times and enjoying some laughs. You would have nearly peed your pants if you'd seen me drive a motorcycle in a video game tonight. I was completely hopeless!!!! We laughed so hard! But I will not give up. I will be back at it tomorrow night to try to improve my skill! It is good to have a young one around to distract the mind! Take care.....
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#22 gabmc

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Posted 27 March 2015 - 08:17 AM

Hey Melissa, just checking in to see how your nephew is?

 

And that your husband is still doing well?


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Gab


#23 Melissa

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Posted 30 March 2015 - 08:32 AM

Oh, thank you, Gab! Aren't you so sweet! :)

 

Husband is doing great. He's back to work, as of the Friday after everything went haywire, and he's feeling great.

 

My nephew is doing well, also. He saw the doctor at the cancer center, and they're talking about going forward with a second bone marrow transplant. It will be hard on him. The chemo is really rough, and the recovery takes several months. He is not as strong physically as he was last time, so that is a huge concern for me, but I'm going to talk to his doctors about ways he can get stronger before the transplant process starts.

 

Mostly, I'm just enjoying his company and keeping hope that everything will go well, that the doctors will know the best way to treat him and deal with the issues that may come up. That whole living in the now thing. :)


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#24 Maplestock

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Posted 30 March 2015 - 05:50 PM

Hey Melissa, I'm glad that things seem to be on an even keel for now. You are dealing with a lot but I'm impressed with how positive you remain and that is so important, so keep up the good work. That's not to say there won't be moments that will be hard but that's when you can reach out and we will try to help carry the load with you - at least in a morally supportive way.
As I said before, your nephew is lucky to have you in his life and we should all remember to live in the now, regardless of the past; the future will arrive soon enough.
Still sending positivity and strength your way!
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#25 Melissa

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Posted 31 March 2015 - 05:55 AM

Hey Melissa, I'm glad that things seem to be on an even keel for now. You are dealing with a lot but I'm impressed with how positive you remain and that is so important, so keep up the good work. That's not to say there won't be moments that will be hard but that's when you can reach out and we will try to help carry the load with you - at least in a morally supportive way.
As I said before, your nephew is lucky to have you in his life and we should all remember to live in the now, regardless of the past; the future will arrive soon enough.
Still sending positivity and strength your way!

 

Thank you. I agree that we should all try to live in the now, no matter the circumstances, but it definitely takes practice! At least it does for me. :)

 

I really do appreciate the compassionate support. Right now, we're kind of "in between," and things are going smoothly. Transplant is a difficult process, and this time around, it will be more difficult than last time, we're told. I'm going to do what I've done throughout, take it a day at a time, a minute at a time when necessary.

 

Again...thank you for your encouraging words. It helps.



#26 Noell

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Posted 06 April 2015 - 06:02 PM

Hi, Melissa. I haven't really been in the forums since my own family crisis in February, but I'm here now and I'm seeing this thread for the first time. I'm sorry for this difficult experience. How is your nephew doing now?


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#27 Melissa

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Posted 07 April 2015 - 06:37 AM

Noell, I have been thinking of you and your family. I lost my father in 2003, and it was one of the most difficult things I've had to endure. My heart goes out to you.

 

Thank you for taking time to post and ask about my nephew. He is doing well right now. Leukemia is in remission, and he is taking a new medication to keep it that way. He is eating well and gaining weight, which is really necessary for him to be strong enough for the bone marrow transplant that will take place probably in late May or early June. He is truly an amazing young man. He is so strong and so resilient. He's been through more in 22 years than most people endure in a lifetime.

 

We're enjoying the calm waters and keeping up hope that transplant will work this time, and he can go back to building his life.

 

I hope that you and Izzy and your family are finding moments of peace and joy. I can tell you that there isn't one day since my father left us that I haven't thought of him or missed him. But with time, the sadness fades, and what's left is good memories. As Ali Edwards once said, "Sorrow is not the end." That comforts me.


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#28 gabmc

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Posted 08 April 2015 - 06:05 AM

I"m so glad he's doing so well. It must be really hard.

 

My son has cystic fibrosis so I understand spending time in the medical system!


Gab


#29 Melissa

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Posted 08 April 2015 - 07:16 AM

I"m so glad he's doing so well. It must be really hard.

 

My son has cystic fibrosis so I understand spending time in the medical system!

 

It is, Gab. Right now, everything's okay, but there are tough roads ahead, and there's always hanging over me the chance that leukemia will win and take him away from us. That's hard to live with.

 

I'm sorry about your son. I don't know a lot about cystic fibrosis, except what I remember when my half-sister was a respiratory therapist when I was a kid and treated a couple of people with it. She used to pound on their backs and chests, as I recall. It looked decidedly uncomfortable. I hope medical science has developed better ways of dealing with it since then.

 

If you ever need a compassionate ear, you have mine.



#30 gabmc

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Posted 08 April 2015 - 07:12 PM

That's a horrible feeling to have hanging over your head ... and believe me I know that feeling! We are lucky to have found each other here so we can support each other.

 

Your nephew is also so lucky to have you and your husband to help him stay strong.

 

CF is the most common life threatening genetic condition affecting caucasians and medical science has come a long long way. If Conor was born when I was born he would have had a life expectancy of 7! Now its mid-late 20's and things are getting better all the time.

 

We did that treatment you mentioned every day until Conor was about 6 - then he started on a newer kind of physiotherapy which involves breathing into a tube. We call the pounding "old style phys" and he still asks for it if he's not well - and he's now 12!


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Gab


#31 Melissa

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Posted 09 April 2015 - 05:26 AM

Oh, honey. I'm so sorry you have to deal with CF and watch your boy struggle with that. It's hard enough for me watching my nephew in his 20's deal with his issues, and I can't imagine what it must be like to see your own child suffer so very young. My heart goes out to you, and you are so right: we are lucky to have each other for support. I've read a lot about caregiving, and the number one thing that is recommended is that caregivers have support to survive the stress.

 

I'm glad the treatment for CF has improved. I wish medical science would find a cure for that and so many other things. I read recently that scientists were able to "delete" HIV genetically, and I imagined what it would be like if they could delete leukemia and other cancers and dementia. And CF, too.

 

Thank you for saying my nephew is lucky to have us in his life. I feel fortunate that we are able to help him. At times, I feel helpless because there's not one thing I can do about leukemia. I imagine you've felt similarly about CF. But I can make my nephew comfortable, help take care of him, give him a safe place to be while he waits for the next step, and after that, for recovery. I can make his life a little easier, and that has to be enough.


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#32 mshanhun

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Posted 12 April 2015 - 07:56 PM

Thinking of you


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:) Melissa
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#33 needtime2scrap

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Posted 13 April 2015 - 09:11 AM

Hugs to you and your family! 


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#34 Melissa

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Posted 15 April 2015 - 01:06 PM

I just heard from the transplant coordinator, and my nephew's bone marrow transplant has been approved by insurance.

 

That is a huge relief.

 

She said that the transplant will proceed rather quickly so that my nephew doesn't fall out of remission, and of course, I am in agreement with that. She asked if I'm ready. I said, "I don't think you can ever be ready." But we need to get it done so he can start to recover.

 

We will probably know within the next week when the process will begin.


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#35 Maplestock

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Posted 15 April 2015 - 01:13 PM

I'm glad for you and your nephew that it was approved and is going ahead quickly. You are right that there's only so ready a person can be for something like this. Thank you for keeping us in the loop and we will hope and pray for a speedy recovery.
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#36 gabmc

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Posted 18 April 2015 - 10:50 PM

Great news Melissa! Let us know how he goes.

 

And keep positive vibes that medical science will be able to one day turn the genes off for diseases like this.

 

I think that all we can do as care-givers is our best and make sure that we look after ourselves too


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Gab


#37 Melissa

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Posted 19 April 2015 - 07:16 AM

Thank you, Gab and Maplestock. The transplant dates have been set. My nephew will be admitted to the hospital on May 5th, start chemo on May 6th, and transplant will happen May 12th. That is all providing, of course, that he's still in remission, which he will have another bone marrow biopsy to check.

 

Just continuing to take one day at a time.



#38 MiaScraps

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Posted 19 April 2015 - 01:48 PM

Great news Mellissa! One day at a time..I know those words well
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#39 gabmc

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Posted 20 April 2015 - 03:05 AM

OMG that's great news.

 

And yes, just one day at a time!


Gab


#40 Melissa

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Posted 20 April 2015 - 06:10 PM

As I mentioned in a thread on the scrapbooking forum, we just found out my mother has a mass on her pancreas and adrenal gland. Due to her age and her many other medical issues, I am not putting her through invasive testing or treatment. Hospice care was started on Friday, the day she got out of the hospital and back to the nursing home.

 

A student nurse I was talking to about my nephew's situation asked me, "What are you going to do if all of this (meaning my Mom's death and my nephew's transplant) happens at the same time?"

 

I don't know. I'm making this up as I go.

 

So...sometimes, it's going to be one minute at a time, but I'm going to "just keep swimming."


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