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My son

Chefdaddy
Posts: 164
Joined: Dec 2009

Hi guys,
I apologize for not checking in once in a while but my son has gotten worse. We're in the hospital now, he was ambulanced in Tuesday evening after 7 hours of chemo up here. The infusion department of the hospital closes at 7:30pm and everyone but one nurse had left and then my son became dizzy, nauseous and chilled. The nurse called for a doctor to check him out from the "In-patient" wing and after looking him over sent us home as he had no fever. I put him to bed and an hour later he awoke with a 103 fever so I had him ambulanced to the ER as I'm still weak from my cancer ordeal and wouldn't be able to pick him up if he fell while trying to get him back in the car.

Yesterday, I learned that there is a very small group of kids (1%) that at the DNA level, cannot tolerate chemotherapy and my son is in that group.
As of a result, he can never have a bone marrow transplant or a liver transplant. The chemo that he has already received has now affected his heart, bladder and the worst so far is that he has developed neuropathy in his spinal cord and all the nerves leaving his spine causing horribly severe pain that they are having difficulty controlling with pain medications due to their negative effect on other organs. His prognosis is now terminal, but they can't give me a clear indication of how much time he has left. Due to his severe anxiety attack issues, we have all agreed that telling him of this news would do more harm to him physically and mentally. I could really use some prayers as trying to keep a positive face is becoming very difficult. For those of you that are aware of the mental and physical abuse that he and his sister went through before getting custody of them, you know he plays a lot of the online military war games to help him focus away from pain and anxiety. Yesterday he asked me if there will ever be a day that he could learn to shoot a real gun, specifically one with a sniper scope (his favorite gun of choice in the games) and I said I hoped so. I made several calls and was finally directed to a nearby Sheriff's indoor shooting range that is open to the public most of the week days but closes for two days just for law enforcement officers. After speaking to the head officer that manages the shooting range he told me that they are going to have my son brought in on a day that's just for officers, set up a low caliber sniper rifle with a scope! When I told my son about what was going to happen he started crying and giving me "high fives" all throughout the rest of the day. I was so impressed with the officer's awesome attitude and how quickly this officer got several other officers there on board with this endeavor

I want to thank you all from the bottom of my heart for not only supporting me throughout my ordeals with cancer but for your never ending compassion and support you have poured out for my children.

Your friend
Mike

CaKat
Posts: 28
Joined: Dec 2011

I'm new, so I don't know your whole story, but what I read brought a tear to my eye and a prayer for your son and the whole family. In this world there is seldom fair. There will be in the next. I pray for islands of peace for each of you during this time. Kuddos for arranging such an awesome experience for your son.
Do you have someone you can talk/vent with? Even someone from the hospital...That might give you an easier time when you are with your son.
This is a good group to come to as well.

tommyodavey's picture
tommyodavey
Posts: 353
Joined: Nov 2011

I am so sorry Mike for all that you and he have endured. This is the first I've heard of this but then I am fairly new here.

The sniper rifle really sounded great. If there is ever a chance to get him to Las Vegas, several gun stores let you shoot machine guns. Not sure about a minimum age but I could find out if you want.

Prayers going out to you and yours,

Tommy

denistd's picture
denistd
Posts: 491
Joined: Apr 2009

I have been here a long time and know the unbelieveable anguish you have gone through Mike, did more than just bring tears to my eyes, God bless and and a heartload of compassion for your boy, your daughter and you. Denis

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hello Mike,
Thanks for posting. From yours and Hondo's posts, I know you and your kids have suffered a series of ordeals that would test anyone. And through it all you've been a great parent to your boy and your girl. Taking the initiative to arrange for your son to shoot a real sniper rifle is just the latest example of your thoughfulness and love for him.
If you could tell us the city the sheriff's office is in, I could look up the address. I'd like to send them a thank you card.
Thoughts and Prayers,
Hal

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Mike I am so sorry to read this. You know you guys are in my prayers every day. You know you can call me anytime day or night, 24/7. So glad that the sheriff's office is going to help him with that request, as that is such a dream for him.

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Hi Mike Buddy....

So sorry hearing the never ending battle you and yours have gone through and continue.

Please know I haven't forgotten you, your son and daughter.

You are always at the top of my prayers..

Thoughts and Prayers,
John

Jan Trinks's picture
Jan Trinks
Posts: 466
Joined: Apr 2009

Mike:

I'm so sorry to hear this. I've kept up with you and your children's situations thru the posts on here thru Hondo mostly. I'm so sorry to hear about your son. I will be praying for you and your children, especially your son and also your daughter for strength to get thru this. I lost my husband of 35 years on Aug. 21, 2010. I don't think I will ever get over losing him and we had no children, but I do go on and try and do what I know he would want me to do. I know thru the posts you have had a very rough time yourself with this beast. May God comfort you and yours. My heart goes out to you and your family. God Bless!

Jan (Basketcase)

luv2cut1's picture
luv2cut1
Posts: 285
Joined: Oct 2010

I am so sorry about your son. My heart is breaking. I have followed your story, mostly through Hondo and I was so happy when things were going well. Please know that you and your family are at the top of my prayer list.

I am so glad your son gets to go shooting. I hope that it is a special time for both of you.

Thank you for updating us, as I know I think of you often.

Myka

wifeforlife
Posts: 189
Joined: Feb 2010

You and your family continue to be in my thoughts and prayers. The struggles you have endured are beyond reason.
Wife

fisrpotpe's picture
fisrpotpe
Posts: 1334
Joined: Aug 2010

mike, prayers will continue for you, your son, family, the doctors and nurses each day.

god bless

KTeacher
Posts: 924
Joined: Jan 2011

Mike, I am so sorry to hear this news. Hondo has kept up updated when he talked to you, things were sounding good a few months ago. Prayers for you and your son and daughter. So glad that the sheriff department will be granting your son a wish.

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

i am so sorry to hear this news. I was reading your story to my husband. He is still healing from throat cancer. I had to stop and shed a tear. Kudos to your sheriff department. I am praying for you and your family. God Bless!!!

staceya's picture
staceya
Posts: 701
Joined: Jan 2010

I join in with all here, as we keep you and your family in our prayers.
You all have been through so much and I send you continued hope and strength.

Stacey

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I can't tell you how heartbreaking this news is. I will continue to keep you, your son and your daughter in my prayers. I don't know how you manage to stay so strong but you have always been a rock for your children.

It's heartwarming to know that your son will be able to fulfill one of his dreams.

Sending hugs and prayers,
Glenna

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

It is still so hard for me to post anything about this because my heart is still so broken

Hondo

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I ache for you. You all have been challenged with and overcome so much in the past couple years. "Unfair" isn't an adequate word. So very cool, though, that you will be special guests at the local police range. I, too, would be interested to know the name of the range/manager - that's a "real man". As always, hoping you all can find a way to keep beating the odds.

Chefdaddy
Posts: 164
Joined: Dec 2009

I'm so very blessed to have friends like you! Thank you all. I will never forget when I was in the hospital, my health rapidly failing and at my lowest moments I started receiving phone calls in my room from several of you, encouraging me, letting me know that I was not alone, praying for me on the phone even when I could barely speak and heavily sedated.
I love and miss you all!

And now, at the lowest moment, you are here again! thank you.

Your friend
Mike

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Mike, we will always be here for you, we will never desert you!!

I think we all feel blessed by the friendships we have with others on this forum. We are all family now and care very much for everyone here.

Stay strong,
Glenna

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

We will continue to be there for you and your family my friend

Tim Hondo

connieprice1's picture
connieprice1
Posts: 299
Joined: Oct 2010

Mike, I just read your post and it brought me to tears. I remember just a few months ago, it seemed like a miracle was coming your way. This disease is truly a cruel roller coaster ride. I pray God will grant your son his wish of shooting the sniper rifle and any other dreams he might desire. He is truly special and someday he will be a Angel. Connie and I will continue to pray for your family.

jim and i's picture
jim and i
Posts: 1599
Joined: May 2011

Mike,

I am praying for your son and family. I do not know the story, but I feel your pain watching your son suffer. I am praying for a miracle for your son and comfort for you and your daughter. May you feel the arms of Jesus enclosing you with comfort.

God's comfort,
Debbie

Daddisgrl's picture
Daddisgrl
Posts: 119
Joined: Feb 2011

I'm so sorry Mike. My dad is gone 6 years (2/6) from AML & reading the beginning of your story is similar to what happened to him

Is he able to tolerate Actiq pops? Speak to the Dr. They work well for cancer pain; much better then patches. They can suck on it a few minutes & not have to have a lot of pain med in their system.

~Hugs

Daddisgrl's picture
Daddisgrl
Posts: 119
Joined: Feb 2011

I want to add the time line for my dad since I don't get here much-
Heart & lung function was about 28% January 1st; by the 20th he was very weak; & by 2/2 I believe we had hospice come. He was gone by 10pm 2/6 & went very peacefully.
Around the 18th his right arm blew up like popeye; it was on the same side as the picc line they removed. They did not treat it. When he was hospitalized on the 1st; they did a pet & found something in his colon & liver but could not do tests. They assumed at that point it had spread.

If you do not know his heart & lung function; ask.
The timeline can be different for your son since he is young. My dad was 69.
Hope this helps. We were clueless until he couldn't get out of bed. The new Dr he had; lied to us & kept telling us he could have a year but when I ordered his files; his records said a few weeks at most. Very upset they were not honest when I asked the right aquestions

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