Update And Info Thread.

[maximillion]

Hello.

 

First let me say a massive thank you to all who have been supporting A and myself through your prayers thoughts and well wishes.

 

It is not good.......As AL said in prayer room, there is massive spread throughout A's abdomen and no real treatment is indicated. He may have some chemo to make him a little more comfortable, we will go to see about this on Tuesday 27th.

 

He has been in a great deal of discomfort....fortunately the new painkillers seem to be helping with that so he is once more able to move about a little and today has gone out in a wheelchair with one of his friends.

 

At times I fee a great deal of despair and anger. It seems so unfair that at 33 A's life is virtually over. 

 

I will use this thread to keep people updated - please use as you wish and I value your contributions and messages. I am not able to be online much.

 

Maxi.

[maximillion]

The new meds are proving to be very effective and A is in a much better place today....and I have had a much needed rest.

 

Thanks once more for the prayers.

[franciscanheart]

:like:

[Comingback]

Hello.

 

First let me say a massive thank you to all who have been supporting A and myself through your prayers thoughts and well wishes.

 

It is not good.......As AL said in prayer room, there is massive spread throughout A's abdomen and no real treatment is indicated. He may have some chemo to make him a little more comfortable, we will go to see about this on Tuesday 27th.

 

He has been in a great deal of discomfort....fortunately the new painkillers seem to be helping with that so he is once more able to move about a little and today has gone out in a wheelchair with one of his friends.

 

At times I fee a great deal of despair and anger. It seems so unfair that at 33 A's life is virtually over. 

 

I will use this thread to keep people updated - please use as you wish and I value your contributions and messages. I am not able to be online much.

 

Maxi.

 I have been keeping up with your news but have not been logged in.  I am so sorry.  You are both in my prayers. 

[AnneLine]

Glad he is feeling better, but no it doesn't seem too fair.   Agreed.  Glad you were able to get some rest and take care of you.  :hug:

[TheresaThoma]

Glad to hear that the new meds are helping a bit. I will be praying for you and asking Mary to support you both through this.

[maximillion]

Latest update.

 

I saw A's scan yesterday and it was terrifying. The prognosis is very poor, but he is having chemo, including some of the newest blood supply blocking drugs, which may give good symptom relief and can even prolong his life a little. Failing a miracle of immense proportions though, these are very probably his last few months.

 

There are big issues with him and his family of origin, and his mum in particular is throwing lots of stuff his, and my, way. Some prayer for peace for his sake would be very welcome, as would support for me. He will be here with me until the end or untill he needs hospice care.

 

Yes, prayer, prayer please. Thank you......

[maximillion]

Aaron starts chemo tomorrow, praise God! It is not too soon. The past two weeks have been awful as he has struggled with vomiting, pain and a growing anger...mainly directed at me because I am the one who is around.

 

He wants and needs to move out of this flat, for both our sakes, but has been told there is no suitable accommodation and social housing wont pay to adapt a flat for someone who might not make it to Christmas......this means he will have to go into residential care, something he has not yet been told. His increasing needs mean I am less and less able to give him the care he requires and the hospice will only take him for a couple of days, as he is not yet actually dying.

It is hard for us both.

 

Prayers would be appreciated. 

 

Thanks pham.

[beatitude]

I'm so sorry. :( I am keeping you both in my prayers.

[CatherineM]

Absolutely prayers.

[tinytherese]

Prayers.

His living situation reminds me of how hard it was for the Holy Family to find a place to stay at Christmas and The Lord provided.

Edited November 5, 2014 by tinytherese

[AnneLine]

That is so hard, Max, hard on you AND hard on Aaron.   You need to take care of yourself, even if that means he has to go to a residential care situation.  

 

Even if not ideal, it will still mean people who can do the physical care of him, and you can focus on just being together when you are there.  

 

Praying for wisdom and courage for both of you..... :sad:  :( :hug: :pray:

[marigold]

Sending you lots of love and prayers. :heart:

[maximillion]

Thank you everyone, thank you all so very much.

 

The line went in yesterday - the bit he was dreading, and chemo started three hours ago with no ill effects so far.

 

One good thing, the steroids have massively reduced the inflammation in his colon and liver so he is no longer being sick and is eating everything in sight!

 

Please keep up the prayer....

[maximillion]

The first chemo is over.......

 

So far, no awful side effects, praise God, though he is pumped full of steroids.

 

It is his birthday today, which is bittersweet. I feel so much for him as he wonders if he will ever see another birthday, at age 34.

 

I have some things to be thankful for. The housing people are really pulling every trick to find him somewhere, which is great.

His mum was nice to me at the hospital - a first.

This treatment is costing £8000 just for the drugs. That is 8000 x 6 = $152000. On top of that is nursing care, 24/7 pain control support, 17 other drugs daily......I am very conscious of not having to bear this cost. Well, we just couldn't! The massive amount is because he is having the most modern drugs - the ones that interrupt blood supply to the growths. If he were 55 he would not get them, he gets them because he is young and because we live in the UK.

 

I am thankful for little Minoos, the black kitten we have, who daily makes Aaron smile when there is not a great deal to be smiling about.

 

I am thankful that social security checks have arrived, greatly easing our financial circumstances and meaning I am not supporting him on my own any more.

 

I am thankful that I am finding that even in this circumstance, there are things to praise God for.....

 

Please keep praying...the effects are obvious.

[Benedictus]

I will be praying, including an extra rosary each day. May Mary and all the saints support you both through this

[AnneLine]

Oh, Maximillian!   

 

Such a beautiful post!

 

God is good, and so generous with us.    I'm glad you are able to celebrate A's birthday and that so-far at least, you are all getting along today.  

 

That does sound like most state-of-the-art chemo.  If he's getting all those steroids as well, be prepared -- he may be VERY awake and VERY extroverted in the first 24-48 hours of going on them (My husband was crazy-awake-and-wanting-to-go-go-go!) when he was on those!    Very unlike Mr AL, but very typical of the people who were in our support group.  It won't last forever, but it is a wild ride!  Hopefully he (and you!) can tolerate the chemo and the steroids and they buy you both some good time and good times!

 

Praying for you two and for ALLL the people who are helping to support you -- the 'boots on the ground' staff there with you in person, and the 'reserve troops' around the world and the 'brethren and sistern' who are with God (angels and saints, perserve us...).... we're all in this together with you, and praying hard for you.  

Let us know how we can help support you, ok?
 

 

 

 

[maximillion]

I cannot thank you all enough, you and all of the prayer support I know is being pulled in across the world and in communities and from people I will never know and never meet in this world.

 

It is my beacon and my strength in the dark watches of the night when I cannot pray but only cry and grieve, a shaft of light that somehow enters my soul with grace and brings some peace, and sleep once more.

 

Please do post here, anyone who wants to, your messages and thoughts are very valuable in letting me know I am not alone.

 

I pray for all of your intentions - when I can.

[marigold]

I will light a candle for A, you, and all involved when I go to Vespers tonight and Liturgy tomorrow. Thinking of you!

[CatherineM]

You're not alone. Having been a foster parent, I know that feeling of loving them yet always thinking people don't think your love is quite the same since you didn't give birth to them.