All went well

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We got home shortly after 10 pm last night.  This one of those rare times that I have difficulty saying it’s good to be home 🙁 Our hearts are back in Cincinnati.

Anyway, the trip went well.  Weather was beautiful, and, with rare exceptions, traffic was light.

There is no significant change with our grandson’s condition.  His sister – the donor – started a series of tests yesterday.  Nine vials of blood!  All went well .

Please keep the prayers going.  They will be needed for at least the next few weeks.  I will keep you posted

Hopefully I will be free to post a few articles as catch up next week.

Sylvia

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Leaving is painful

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We are heading for home in the morning.  For a variety of reasons decision made that the trip to Ireland with grand-daughters will carry on.  We will be back to Ohio as soon as the trip is over.

Our grandson’s chemo will start in a week to ten days.  This is part of the preparation for the bone marrow transplant.  His little sister (the donor) starts a series of tests tomorrow.

Leaving is painful.

Keep those prayers going. There are difficult days ahead.

Sylvia

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Good day yesterday

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A big day yesterday.  We finally got the news; two of our grandson’s little sisters are matches ☺  The 12-year-old will be the donor.  One other genetic test – the last – is due back today.  That determines how they will prepare him for the transplant.   So, a meet with doctors tomorrow to discuss what lies ahead.

And, yesterday they found a house!

Prayers answered!

Keep the prayers going.  There is a tough road ahead. Portions of grandson’s blood work which were already virtually bottomed out are still dropping.   He is extremely vulnerable to infection.  I think a week to two weeks till he is ready forbthe transplant.

Thank you all for your prayers.  Please keep praying

Sylvia

 

 

 

 

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Big day today

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Big day today – we’ll find out if there is a sibling match for bone marrow transplant, and, son in law and rest of family should arrive this afternoon from Nebraska.

Another run up to Dayton yesterday to look at two houses.  No luck.  The hunt on the housing front continues. So time consuming- and takes daughter away from her son and hospital.  Grandpa stays at hospital , but mom wants to be there too.  Pray for the right house at the right price soon.

Sylvia

 

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The best laid plans

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The days have been amazingly busy.  Little chance to get near a computer, and by days end we are just ready to  crawl into bed and have a good night’s  sleep.

Our grandson is holding his own, blood levels being maintained at reasonable threshold with transfusions as required.   You would never for moment know by looking at him how very I’ll he is. He’s still pale, but has so much more colour than he did a week ago.

On Monday we will find out if one of his siblings is a match to be a bone marrow donor.   There is one more test to come back to rule genetics out or in as cause for  the a plastic anemia. All viral tests have come back negative.

If there is a sibling match for donor then the process starts to prepare for the transplant.  If there is no sibling match they will start an immunosuppresant drug regime , the idea basically being that the immune system is probably attacking the bone marrow and to try to stop that.   The results aren’t too exciting, and not infrequently the next step is a bone marrow transplant  from an unrelated donor.

We’re  praying there is a sibling match!

Yesterday and today we went in  to Dayton house hunting.  We head in after the doctors have made rounds.  This is a good time to try to find a house because everything is under control right now , and our son is here to happily drive hus sister from house to house house.

No luck yet 😔

Our son-in-law and the rest of the family head here tomorrow from Nebraska.  They will arrive on Monday.

Our daughter’s name is on the Ronald MacDonald house waiting list.  It takes about 14 to 16 days to get in.  I have a new found appreciation for these places!  What a necessary service they provide in the midst of so much heartache and confusion.

Anyway, we’ll  see what Monday brings.  Not sure yet how long we’ll  be here.  We are supposed to heading  for Ireland early July with our two 18-year-old granddaughters , one the older sister of our sick grandson.

Everything is up in the air.  The most important thing right now our grandson .  The best laid plans of mice and men….

Keep the prayers going.   They are being heard and answered in countless small ways.

Sylvua

 

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Another world

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We’re still waiting for results from blood work.  We should know by weekend if any of our grandsons siblings can be a bone marrow donor.

Busy days at hospital.  Doctors have been so good and staff are wonderful.

We are meeting other Moms in the hospital – it’s  amazing what they have been and continue  to go through.  Some have been in the hospital with sick child for months – miles and miles from home and trying to keep a normalcy and interaction with their other children while hovering at the bedside of a critically ill child. It’s another world.

We’ll see what today brings.  Our grandson is in good cheer and taking this new and very unwelcome chapter in his life in stride.  Our daughter is holding in there – missing her other children and working on the logistics  if getting them here and having them cared for when her husband starts a new job in another city, plus trying to house  hunt!  An awful situation, but am realizing that in this world she is far from unique and in fact there are many many who are in worse situations.

In the midst of the chaos prayers are being answered.  Little things.  Important things.

Sylvia

 

 

 

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No real news

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There’s  no real new news from today.  Doctors are  still waiting for results from various  tests before determining the way ahead.   Our grandsons bone marrow is 10% functional – as one doctor said, 0%, 10% – really jo difference.  He is totally reliant on blood and transplant transfusions.

He is pale, – dark circles under his eyes, but is reading, playing games and chatting.  He’s also so enjoying all the Canadian chocolates and ketchup potata chips which are jammed into his bedside table 😊

We’re still waiting for results of tests done to determine if any of  his siblings would be a good marrow donor .  Pray that one is.

Still so very impressed with hospital and staff.  There are patients here from all over world.  Our grandson is in good hands.

Keep the prayers going.

Sylvia

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Day at hospital

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We arrived in Cincinnanti in the early afternoon. Went straight to children’s  hospital and spent the day there.

What an amazing place! I am totally at a loss for words.  It’s  not just the medical, it’s the lengths to which volunteers and staff go to ensure the patients  and their familiesare as comfortable as is humanly possible under what are frequently very trying circumstances.  There are just so many people doing good things.

They are still doing all sorts of tests on our grandson and awaiting results of others.  He had two more units it’s of blood today.  All blood counts are still low.

Thanks to those of you who have offered your support and prayers.  And thanks for those who shared your own personal and very positive and comforting dealings with aplastic anemua.

Keep the prayers going.  They  are needed as much as ever.

Sylvia

Sylvua6

 

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Good run

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We stopped for the night. 3.5 hours to go tomorrow.  A good run .  A few spells where rain was coming down in buckets, but the day started and finished with sunshine

Grandson in good hands.

Sylvia

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Medivac

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Our grandson is being medivaced this morning to  another children’s hospital .  Please continue to keep him in your prayers.  As I told you before he, he has been diagnosed with aplastic anemia.  His red blood cells, platelets and white blood cells have all essentially tanked.  The way ahead will be determined by those who are taking over our grandson’s care.

My husband and I will attend Mass this morning and then hop in the car and head right for the States.  I think we will probably drive until early evening, stop somewhere for the night and then drive the last few hours in the morning.

I will just leave it at that for now – will post a few words when we stop for he night.

For the time being I will  be blogging to keep you abreast  the medical situation.   If there is an article you believe people should read please post a comment with a link to the article.

Thank you all for your prayers and support.  Please keep the prayers going.

Sylvia

 

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