Manfred Josef Froehler Jr. 06/21/2008 - 01/15/2012

Peace

Junior passed away at 6:58 this evening.  He was in my arms, his brothers and dad were all with him.  He is my hero.  Mommy is so proud of you.  Fly away baby.

There is more I want to tell you, but I think I may think on it for a while.  Still so numb, unbelieving.

Waiting

So now we are done, hope for recovery is gone.  His MRI last week showed progression of the Leptomenengial Disease and his ventricles are filled with fluid, causing pressure on the brain.  We are not continuing chemo.  He is really stable right now, the morphine drip pump has been added to his long list of apparatus that has moved into our home to keep him comfortable.  He dosn't respond at all except for a small eye blink once in a while, he doesn't hold on to our fingers anymore.  What is he waiting for?  It is so hard to see him like this, when he be ready to fly away from this world and that sweet little body.  He is so strong and mommy is so proud of the fight he has put up.  You would think that I would eventually dry up and run out of tears.  But when I think of the future without him and his potential that is wasted, it breaks my heart and the tears come again. 

Christmas

Oh, please, let us get through this.  Let him wake up and see the presents we got him.  Let him show us he is still with us.  I want my baby to talk to me again.  He is so strong, he is still holding on to this life.  I love him so much.  This is not fucking fair.

Quick Update

I wrote this to my care team at Cincinnati Children's.  It got a bit long but I thought it might do as an update on Jr.  Little bugger isn't going anywhere and he is keeping us busy! I jsut cut and pasted this from the email.

Hello all,

Sorry i did not get back to you as soon as i liked.  Here is Junior's current condition in more detail. 

His biggest issue right now still is his secretions. It has caused sudden drops in his pulseox that required some jostling to make him cough.  We are doing suction with a catheter every 1-2 days.  I am giving nebulizer treatments with Xaponex 2-4 times a day.  He is still watching Dora and Diego with his good eye.  It is very bloodshot but he is still actively using it.  We have suspended using the GenTeal drops as they seem to irritate lately and are using LiquiTears a few times a day. 

We are managing pain on an as needed basis with Tylenol, morphine, dilaudid, and Prilosec.  It is still difficult to recognize if he is in pain.  Just today though it seems that coughing is causing pain.  Otherwise, high heart rate and signs of agitation usually are the only indicators of pain.

Now for the big news, we are going to Disney on Wednesday to the Give Kids the World Village through the Make a Wish Foundation.  Dr. Hudspeth at MUSC was a huge advocate for us and things were rushed through very quickly.  It is a seven hour drive from Charleston and we are preparing like crazy here.  Mollie our most awesome hospice nurse is a great help in this.

So anyway, i attached the labs from Thursday, they will be drawn again on Monday.  Please contact me or Mollie Huskey if you have or need more info.  I miss you all and i promise i know the situation that we are in right now and coping the best we can.

Ivie

Tough little guy

On Thursday, we arrived at CCHMC for clinic, in record time I might add. The team, onccologist, fellow, nutrition, coordinator, and social worker, and Pastor Sue (whonactually waan't there but came the next day), so we decidedon a course of action to keep Jr comfortable and with us for as long as possible. Goodbye feedung tube and hello TPNs. Yeah! Well, that nightvhe aspirated and things went very badly, siezure and into ICU with no guarantee that he would recover, and this could be IT. So after a long Adavan nap, the little bugger wakes up and is fine, a bit better than fine due to the ectra fluids.
So, how many more times are we going to go through this, not for awhile I hope. I am going to contact Make-A-Wish in SC on Monday, this little guy needs to see the mouse and god knows so do the rest of us.

No clue what to call this post.

Worst possible news.  The cancer is back and it is untreatable.  We are going to Cincinnati tonite to CCHMC to get him ready to live the rest of his life.  Oh my god, how can this happen? 

Any of you can come and see us this weekend, text, FB, or call to let me know.

He is such a good boy.

Happy Birthday Jr!

I know it's been a long time since my last post, but we have been home.  Jr is doing wonderfully.  Today was his birthday, he is 3 years old.  I cannot not even imagine that just 7 months ago, we were faced with the possibility that this day would never come. 

So some things that have happened.  His pheresis cather was removed and replaced with a PIC in his arm, much less obtrusive.  He has been off TPN (total IV nutrition) for almost 2 months.  His MRI and LP came back with no sign of tumor.  He eats almost constantly and is growing hair back.

And last but not least, he is 3 years old, in every sense of the word.  With all the joys and struggles that come with it.  His time in the hospital where someone was there whenever he made the slightest moan or peep has created quite the little control freak.  We are lucky that he is so easy to please. 

We are starting proton radiation therapy next week in Bloomington, Indiana.  It is about 3 hours away, so once again the family will be scattered.  A big shout out to Nana who will have the Logan and Lukas for a couple of weeks up in Michgan. 

Please pray the side effects are small and the results big!

Link

I actually had the courage tonite to read about other parents ordeals with this type of cancer.  I found Caiden.  He has gone through an almost identical treatment regimen. His site is fortheloveofcaiden.blogspot.com,  he is so lucky to have a mother to put in so much information.  Her blog is what I aspired mine to be like.  Please include Caiden in your prayers.

Just a little note.

He had his MRI and Lumbar Puncture last Friday.  They cannot find any cancer cells.  I am so crying right now.  He is currently CANCER FREE!

Last Round...Hopefully

We were admitted last Friday for our last round of chemo with stem cell transplant.  What it means for now is that there is no more scheduled chemo and we can hope that the MRI will show no cancer.  If it shows nothing, they may do a lumbar puncture to see if there are any cancer cells floating around in there.  That is the way I understand it at least. 
So if there is something found on the MRI or LP, we may be headed for radiation.  But reguardless, at least two good things are going to come when we are done with the transplants.  First, we are going to be home for at least a couple of months, I think.  Second, his hair may start to grow back! 

I've got some pictures I will be posting later on.

This is how we feel about cancer

FUCK CANCER!

Going home

So we are blowing this popcicle stand in the morning.  Sorry, I would have posted more, but really nothing exciting happened this time.  If anything, this was a breeze.  We are getting out two days earlier than last time which is awesome.  So we will be home until April 1, I think.  The boys also have off school for spring break the last week of March so if anyone wants to come and visit, (Addie, Holly, John), nows the time to do it. 
Jr is doing great, when we were admitted this time, they gave him dexamathasone which had interesting side effects.  First, it made him into a 15 yr old girl, drama, crying, moody, loopy.  Second, he ate.  For 3 days, there was nothing he would not eat.  It was great, awesome.  He is also taking his pacifier again.  He has tapered off but I am sure it will pick up again once we get home. 
Yippy Skippy!

Finally a post

I'll betcha you didn't even know you were wondering what stem cells looked like.

I do not know what kind of face Jr is making at that moment, I am pretty sure he was not crying.  Stem cell transplants do not hurt.  They flow in by gravity over about 15-20 minutes. 
The next pic shows the apparatus they go in through.

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