Reality
Through all of our trials one thing we always want is for the doctors to be up front, to tell us the truth and not try to hide what's really going on. Often we have to draw our own conclusions, sometimes hoping that these conclusion are wrong, other times drawing hope from these conclusion. Several weeks ago we had come to one such conclusion, this time hoping we were wrong, but strongly feeling we were right. This past week the doctors confirmed our conclusion.
Just as we like the doctors to be upfront with us, so also we like to be up front with our readers. We've been so busy reporting on what's been happening each day and trying to keep up this past week that I haven't had time to sit down and sum things up. So I will try to do that now.
From our discussion and conversations with many of you, we realize that the tub analagy really hit home (see here). As the days progress, it is becoming more evident that James' time in the tub is coming to a close. When things went bad after the second WLL and antibiotics did not get rid of the fevers, we began to realize that there were no other options. We had tried the known options and now we were left with the unknown. The third WLL was done in hope that they would find something new in his lungs that could easily be treated, but in reality we knew it wasn't likely to happen. At the same time we realized not attempting to look again would definitely not give any further information. So we plodded ahead. While we were not expecting a cure from the third WLL, we were also not expecting him to take such a bad turn afterwards.
Along with the doctors we realized that a lung biopsy was very much necessary now. We even wonder why we didn't question to do this instead of the third WLL. Hindsight. What are we truly expecting from this biopsy? To be honest ... nothing. We are expecting a miracle if we truly believe this was going to give us something new. The doctors are quite confident that James has secondary PAP. His PAP is secondary to his LPI. Normal PAP is much easier to treat, LPI PAP is a whole new department. So in essence it is really James' LPI that is the problem here. We can speculate that James not only has PAP but also another disease which is throwing off his PAP and making it difficult to treat. But if he does have another disease it too will be rare, and likely hard to treat.
So what this lung biopsy does, is it confirms the diagnosis of LPI PAP, of which there is no cure. With it, the doctors document they have done all that they can do. Once we get the results we will know if there is anything else that we can try, or we will have to make James as comfortable as possible in his final days. If it is the latter, we pray that this will be but a short term, foremost for the sake of his suffering, but also for the burden on us as parents.
"I consider that our present sufferings are not worth comparing with the glory that will be revealed to us." Romans 8: 18
26 comments:
As I sit here reading your last post, it brings tears to my eyes. As a family you have all been through so much. Although reality is hard to face, you continue to show how strong your faith in our Lord is-how comforting. He is truly by your side and knows your many needs. We continue to pray for James and your family daily. May God grant you an extra measure of peace and patience. In Christ's love, Dan & Carrie Hartman
My (our) heart weeps for you!!!! And how I wish I could hug James!! so please do that for me!
Rob and Steph there really are so few words anyone can say! We can only say that we pray for Gods will to be done! and for MUCH strength for you as family!!((HUGS))
I also want to tell you now, Rob and Steph, thank you for being such a strong and bright "light" (and even though you might have felt and perhaps sometimes still feel, at times that that light was and or is flickering, we only saw/see it shine bright!!)
God has blessed all of us with you!
Sometimes when we pray, we don't always know what to ask our Lord to do for you and James, but, we are thankful that God knows what to do.!
Again...we continue to pray!
Rich and Tracey Stam
I am having a hard time putting into words how my heart weeps for all of you. May God continue to be your source of strength during the ups and downs. James' is a beautiful child of God and we can all be comforted by that. much love,
Sarah Huizing (nee Heyink)
This post has been very difficult for us to read, but I'm sure it was much more difficult for you to write. We will continue to bring you before God's throne in prayer, pleading with Him for James' desperately-needed miracle...whether that be healing on earth or in heaven.
Love from, the Noots
I have no words to give you...I can't begin to understand the pain you are going through...but I can lift up my hands in prayer...and I will continue to do so. May the Provider of all that we have need of, cradle you in His arms and provide you with strength.
Oh, Rob, Steph and family... I am so sad and sorry to read this post! But remember that even though the doctors say "there is nothing more we can do"...we know what to do- keep praying!! And God can always do more. We will continue to pray for you.
Our thoughts and hearts are with you. May you continue in God's grace knowing that he is a good God and does everything for our good. We and our church will continue to pray for you.
Jake and Minnie Aikema
We will continue to remember you and your family in our prayers. May the Lord continue to hold you in His loving care.
Fred & Evelyn Vandervelde
Rob and Stephanie - not much we can say that hasn't already been said - your family is in our prayers. May you continue to draw your strength from our LORD's inexhaustible supply.
Fred & Wendy Vandervelde
Through all this, it is important to be real - to be mentally prepared. We continue to pray.
Dear Rob & Steph
As readers we cannot begin to imagine how sad it must been to have to write this about your sweet little James. To come to grips with this being reality, and not worst case scenario must be heart wrenching. We will continue to pray for your family; for peace most of all, for God's grace, and if it be His will for a miracle. Praying that you will profoundly experience God's nearness, and be able to lay all your burdens at His feet.
Much love, Al and Diane
Rob and Stephanie... I think most have said what I would like to have said already. We are really sorry that you have to hit this spot in your lives. We continually pray for you here. The Lord will give you strength when you need it the most.
love, Andrew and Michelle Vanderven
Our hearts are breaking after reading this post. We can only imagine how difficult it must have been for you to write it.
Everyone who has kept up with your story knows that you have been given strength, knowledge and wisdom throughout this ordeal. You have been your wee son's advocates, but most all you have been loving, caring parents who wanted nothing more than to see him relieved of his discomfort.
We continue to pray for the Lord's blessing upon your lives, especially in this time of deepening concern. We take comfort in the knowledge that with God all things are possible. We hope for a miracle, but also truly pray that the Lord's Will may be done.
We thank the Lord for the example that He has given all of us in you.
Wishing you the Lord's blessing.
Arend and Willa Dale
Dear Rob and Steph and family
We continue to pray for you all,we pray for a miracle for James,we pray that the Lord`s will be done.Ps.27,Book of Praise
God is my light my refuge, my salvation. Whom shall I fear the Lord comes to my aid.He is my strength in all my tribulation.Of whom shall I then ever be afraid?When foes who seek my life close in on me, they all shall stumble and in anguish flee; And though their armies should in war draw near,I`ll put my trust in Him, I will not fear. Give James a hug from us, and may the Lord give continued strength to you all.Love you all: John and Martha, Zane, Leanne, Dean, Dana, Jody, Tonya, Joseph, Wayne, Lauren
I have just read your latest up date, and I think that the thoughts of family, friends and those of us that don't knew you but have been in prayer as part of God's family have been expressed.
Remember this is the day that the Lord has Made and we Will Rejoice and be Glad in it.
It also makes me think of a hymn that I learned as a little girl in Sunday School When he cometh I will look up the words for you but to gather up his precious jewels.
We will continue to pray for all of you, knowing God will keep his loving arms wrapped around you and give you strength.
Neighbours of Ed and Henrietta
Rob and Steph:
During these most difficult times, we want you to know that we also hold you in our prayers. We pray for a miracle that all things with James will be well. All things are possible with God and whatever His will may be, may He continue to give you all the strength that you need. May you feel His loving arms around you, and give you peace. Our thoughts and prayers are with you all.
Gerald and Sarah Hutten
Rob and Steph. Reading your latest post is just incredible. I find it amazing that in the middle of your trial you still take the time to help us all understand what is happening. Please know that even as you come to all these ends in the roads you have been travelling we are all still praying for you. May you have the strength to deal with all these things...
Look to the LORD and his strength;
seek his face always
PS 105
All our best....
Keep your Faith Strong
Brian and Lisa Vanderhout
Rob and Steph:
I wish you the strength and comfort necessary and if it be God's will the miracle James is in need of. Please know that we continue to take your needs before Our Father in Heaven.
Jay, Tara, Rachel and Sheldon
Rob, Steph & Family
We continue to pray for all of you in these difficult times. Please know that even though we truly do not understand the depths of what you are going through on a daily basis we know that the Lord has and continues to strength you. We have seen what faith in Him can bring, through you and you continue to amaze us all. Continue to hold fast to Him!
Lots of hugs for you all and James!
Bert & Judy
Rob and Steph, and family:
Words cannot express how we feel!
We continually pray the Lord will be your strength as you travel this road He has given you.
Even though medically there is no hope, we have renewed hope in Him.
May Gods' peace and love surround you all. The words of the poem "Footprints" comes to mind, where He is holding you both, you are not walking alone!
God's love and our love, Jay, Meta and family
Rob and Steph, and family, our prayers are with you still. We know the LORD knows all of our needs and we pray that He will continue to give you the strength and endurance to deal with this all. Maybe they can do something for his disease, and maybe not. But we do know that the LORD always holds his children close to him, that is for sure.
Brad and Deb Alkema and family
We too are at a loss for words. But want you to know that our thoughts and prayers continue to be with your family. We too pray for a miracle for James, but also that the Lord will sustain you and give you strength. much love, Gregg and Laura Vandenberg
This is a hard reality to face now that the doctors have confirmed it but God will give you the strength you need to be there for James and to get throught these times. I pray daily for a miracle for James and less suffering as well as strength for your family. Please give James a big!!! huge for me! and say hi to the girls frome me!
Katie Schouten
Dear Rob and Stephanie and girls,
Our thoughts and prayers continue to be with you throughout these difficult days. May He continue to surround you in His loving care and grant you his peace.
In Him, Marg DeJong and family
Rob, Stephanie and family,
Reading your latest update on your precious son, James, has brought tears to our eyes. We can never even imagine what your lives have been like throughout this ordeal and especially now with this news. We continue to pray for your family and for James that God will wrap His loving arms around you all. Take comfort in knowing that all things are possible through Him and that all things are in His hands. May He grant you patience, peace, comfort and strength. Remembering you continually in our prayers,
Andrew and Kerri Jans and family
Dear Rob and Steph,
You are in our prayers. What a comfort knowing that little James is in God's hands, and that all of you are! He knows what's best, and has already worked many wonderful things through James' witness, and your witness. Rest in Him. Alice and Allan and kids.
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