2 Cor 12v9

Friday, 20 April 2012

The Worst News Possible

After a couple of shaky weeks with Scooby's seizure activity, and then some new and unsettling symptoms this week, such as struggling to speak and being unable to keep his eyes open for more than a few seconds, we decided to give him an EEG and an MRI. We've had so many of these before, often with inconclusive results, that we didn't really think about the outcome. We hoped all his symptoms could be explained as side-effects from the many medicines he was on.

But an hour later we were in the office with several consultants being told news that turned our world upside down. Scooby's brain is riddled with disease. Where in January's scans there had been a few white lines and grey patches, now they dominated the picture. The doctors were as shocked as we were.

Although his original brain disease had never been identified, it had been narrowed down to an immune system dysfunction because every other avenue had been explored and it was the only possibility left. Immuno-suppressants had been used to try and keep it under control, but then he developed the blood disease HLH, which meant we immediately had to go to chemo and bone marrow transplant because there was no choice - HLH is a terminal disease and that is the treatment for it. And we all presumed that destroying his immune system altogether and replacing it with a new one would solve the problem of the mysterious brain disease too.

Nobody expected that it would continue on its path of destruction, untouched by the biggest possible medical intervention we could have thrown at it.

The last physical hope we have is that some virus has entered his brain which looks like the original disease but is actually something else. If that were found and identified, it could be treated and hopefully leave little damage. But the chance of this is practically nil. We know this is a formality rather than a probability and will get those test results on Monday.

There are no other options. In the second meeting, after the news had sunk in and we'd asked about every possible medical option we could think of, the only thing left to talk about was palliative care. That at some point we will have to make a decision about whether to continue treating infections that arise and giving transfusions when he needs them, or whether we choose to let him be and shorten the process of what could be a long degenerative decline.

When I was in labour with my babies, I had to keep my mouth closed all the time because once I opened it I couldn't stop the noise that came out. That is what has happened today, back in the four walls of our hospital room. I have had to cry silently and with discipline because the feral groans that try and escape from deep within my gut would have shaken the whole hospital.

God, I want to keep him. Please. We need a miracle.

26 comments:

  1. Ever here, ever praying, ever believing. Love to you all. Isabelle.x

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  2. My dear, dear friend. I understand your fears, I promise you I do. When I read the news last night I stamped around my living room, shouting and swearing at....I have no idea who...but I do suspect it was God. You know my opinions even though I have total respect and admiration for anybody who thinks differently to me. l looked at a beautiful portrait that a friend did for me of my son Matt...I looked at Gareths photograph and I screamed out loud at them...'Dont you dare do this God...dont you dare do this.' Might I add the words were accompanied by swearing. I know also about the 'closed mouth' I know about the 'dust in my eye' to disguise the fact that I was crying. I dont know how to help - I have no idea. I dont know what to say - words mean nothing. I want to send my deep love and affection to you and your family tonight - but mainly to you. From one Mum to another. I will always be here for you - always and forever. If ever somebody deserved a miracle to happen it is your precious boy. 'Dare to be a Daniel' as the song goes - this life is sometimes too much to bear. I love you my friend - I know we have only met once but your compassion and kindness shines out to everybody who meets you. Holding you closer than ever. Shabbs xxxx

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  3. Praying for you here in Dallas, TX and spreading the word!! God can work amazing miracles and I hope it is in His will to save your boy!! Hang in there!

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  4. Praying in Texas, for comfort, wisdom, peace and healing. ~Mindy

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  5. Richard and Esther. There are no words I can say to ease your pain. I just want to let you know once again, that I am praying for Daniel. I have a prayer group in Panama of 8 faithful women and they have been praying earnestly for him and for your entire family. We are praying for a miracle and we are waiting on the Lord. Daniel is so precious and although we are so far away, we do love him and love your family. All this situation has brought closer to God in prayer for Daniel. Hang in there, the Lord is holding you right now. Love. Carlos y Deinis Gomez-Mall Panama, Central America

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  6. The amount of faith you have is inspirational. I'll continue to pray that one day this beautiful boy will baffle doctors and nurses, that they will see what they have never seen before and that your scooby will tell hundreds of people his amazing testimony. I thank God that he has gone before and has a great plan x

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  7. Oh Esther and Richard, my heart aches and aches for you all. There is no worse news you could have been given. It is every parents nightmare. Be strong for each other, love Trips xx

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  8. I heard about your poor darling son through my friends shabs

    I know there is nothing I can say right now that will help.. but you are in our thoughts and prayers and hopefully you will take some crumb of comfort from all the prayers being said for Daniel at the moment

    Take strength from each other and from the Lord

    frasersmummy

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  9. So sorry to hear your news. Just to let you know that we continue to add our prayers to the hundreds of others. My bible study group has also been praying for You all. We pray that Our Heavenly Father will put His loving arms around you and protect and comfort you all.
    With love
    Sarah Slater x

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  10. As impossible as it seems,I do know that God is as broken-hearted as you all are, His only comfort is that you allow Him in to share your grief, your anger and your pain. I don't know why He hasn't stopped it, I only know He is one with you. Holding you all in prayer, love and hugs, a mum xx

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  11. Following you and believing the inner strength we all have to will Daniel back to strength my own hearts hurts with so much pain Your pain must be so deep that I feel so guilty fighting back the tears that I shed.
    All my love Mrs B x

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  12. Estar-You don't know me, but I am a fellow mum of twins, and friends with Shabs and Trips. I, like many others, have been following your families story,and my husband and I are sat here in tears as I write this. I added Daniel and your family to my prayer circle list a while ago. I have now contacted not just my circle, but others in the area, and we are praying for you all. I know He loves us all, and His loving arms surround us, but I really pray He has a miracle planned for your darling boy. Love Bubby xx

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  13. don't know what to say... i'm so sorry... and moved to tears.
    sending my love, reggie (from rtc/austria)

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  14. Esther, I am weeping with you and holding onto God's promises with you.

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  15. I too am a mum and can understand your feral screams and shouts. My big boy has recently been diagnosed with a brain tumour. I do not understand why this has happened to either of us but you must believe that God loves our boys even more than we do. We have to believe that the Almighty is in control and grieves with us in our pain.
    I am praying for you all for a miracle.

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    1. What is your son's name - we would like to pray for him also throughout the day xx

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  16. "...the Spirit helps us in our weakness. We do not know what to pray for, but the Spirit Himself intercedes for us with groans that words cannot express... the Spirit intercedes for the saints in accordance with God's will." Romans 8:25-26

    Praying for you all in the Spirit, sweetheart, because words have failed even me. xxx

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  17. When I read your post I wanted to leave something here that could explain it all better or bring you comfort. But words like God is in control and He is there for you.... or, God knows all and He will take care of your child... they might be true but they don't seem very comforting. The Mom inside me is horrified and cries out with you. No parent should lose their child and it angers me that anyone should even be threatened with this.
    All I can think is that I will take up your thought 'Please God, let them keep him' and it will be repeated many times and I will pray and ask others to do the same. May God watch over you all and bring you comfort and support.

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  18. I will pray for you all.
    God Bless,
    MarkyBee

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  19. Our hearts and prayers are with you.

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  20. So very sad for you and your Scooby and your lovely family. I am 24 years on the other side of losing my healthy little boy to an unknown illness. Never had chance to say goodbye. It always hurts, but life can still be good. Keep strong, keep your faith, and take some small comfort from the caring of strangers, who are with you in thought and prayer. Auto-immune diseases can be beaten! xx

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  21. Sad to know what is happening to your litle one. I will ask my friends to pray for you and the boy during our daily Lunch Hours fellowship. Please, I ask you to read Isaiah 59:1. Our God only wants us to keep trusting in Him and asking Him for help. Anything we ask from God in the name of Jesus Christ our Lord and savior shall be granted. No matter what happens, please keep trusting in God. My prayers and thoughts are with you. May God be with you and answer your prayers. God bless you all....Amen.

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    1. You dont know me but I am praying hard for you all. God can move mountains, He can heal your boy. I pray that in his mercy He will.

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  22. Still praying and asking other to do so also. Praying big! Praying for complete and permanent healing. Praying for a miracle. Just keeping on praying. xxxx

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  23. I am praying for Scooby, and the only thing else I can offer is some of the finest institutions in America. I used to work at Shand's Teaching Hospital, now called Shand's Hospital in Gainesville, Florida, and they have done wonderful things. I know the South United States has some of the best facilities, such as Emory, of course the Center for Disease Control. In the north are The Cleveland Clinic and of course Mayo Clinic. You know if you have the info. I have a Facebook friend I used to work with at Shand's who works close to the John Hopkins, so maybe by sharing it word can be spread.

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  24. I am praying for your son and believing in Gods miracles. i hope your sons problem will be diagnosed and treated with the utmost success.

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