Bucky Update: 1/24/13

Hello family,

Bucky is home from the hospital!  And we absolutely love having him home.  Our goal now is to keep him healthy and infection free.  He will have weekly appointments at the hospital and one of the things they will do at this appointment is check his blood, and then determine how much tacrolimus (the immunosuppressant) he needs.

I think he's feeling pretty good.  He helped me make dinner last night and washed the pots and pans so he must be feeling alright, right?  And now he's playing a memory game with the kids, so it's almost like having the real Bucky back.

Thank you for all of your prayers and support.

So far, the white blood cells he has been making are good healthy ones, but we won't know for certain until he has his 100-day bone marrow biopsy.  Praying he is completely cured.

Love you all,

TJ

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Bucky Update: 1/20/13

Hello Family,

I suppose I could give you another update, although it doesn't seem like much has changed from my perspective.

Bucky has finished 12 treatments and has just 3 more to go.  I should have asked him what they actually call his treatments with the mist.

Anyway, for it, he has to put on the hospital gowns and pants (size 5XL.  I'm wondering if the person who picked that size had ever seen Bucky before.  He could literally fit three Bucky's in those pants.  Heck, our whole family would fit in those pants.  Literally.)  So he puts those on and slippers and he goes into the room next door.  He does some breathing things (I have no idea...) he does a crossword, takes a nap and after the two hours are up, he showers and goes back to his regular room.  Anything he takes into that room has to be thrown away (that's why he does a crossword).  Which come to think of it, he must be becoming more and more like my dad every day.  Which is totally cool unless one of his daughters decides to get married at 18.  I kid.  Kind of.

His blood counts are looking more and more like a regular person!  White blood cells and platelets are in the normal zone.  His red blood cells are still a little low, but they are climbing.

Rumor has it, he might be coming home tomorrow night.  That is, if he can keep it boring for the next 24 hours.  And please keep it boring for the rest of eternity.

I haven't actually seen him (well unless you count facetime) this week, (I'm pretty freaked about exposing my baby to RSV), so you might get better information on how he's doing from his parents, who have been super awesome at visiting him.  And doing his laundry.  Thanks!

He tells me he feels fine.  He did say that the doctors say he's doing well.

Thanks so much for all of your help and prayers.  They have buoyed us so much.  

Love you all,

TJ

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Bucky Update: 1/9/13

Hello Family,

Bucky's blood counts are still quite low, but are starting to recover, so it appears that the stem cells have grafted.  He's been getting blood and platelets quite frequently, but didn't need any today.

He woke up last night with his tacrolimus (the immunosuppressant) pump leaking...the nurses gown up when the administer that one...umm, that's not scary, having a biochemical leaking in his room.  Better than in his blood, right?  Haha.

Now they will be watching closely for GVHD, this would be anything from rashes on the skin to inflammation of the GI tract.  So even though Bucky and his brother were an 8 for 8 HLA match, they still could have genetically different proteins (antigens), which would cause the GVHD.

Bucky's goal is to be out of the hospital sometime next week.  Because "you have to have goals," he told me.  Well, I'm not sure what he can do to work towards this goal, but it sounds reasonable to me.  But then again, I'm not a doctor.  But he is excited to get out of the hospital and take naps with Cocoa Bean.

Everything seems to be going well so far.  God has so been so merciful to us. Thanks for your continued prayers and support.

We love you all,

TJ

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Bucky Update: 1/3/13

Family,

I visited Bucky yesterday. His hair shedding everywhere was starting to annoy him, so he just shaved it all off. Now he really looks like he belongs in the 8th floor club. (The other members were starting to shun him...no just kidding, everyone is really nice.)

His temperature has still been fluctuating, so they took a blood culture last night. They are only able to figure out where the infection is about a third of the time.

The doctor came in and was impressed that Bucky could still eat hot sauce. So I guess that's good. He didn't really say too much, so I guess Bucky is doing a pretty good job keeping it boring. Except with the fluctuating temperature...the nurses were constantly coming in to take his temperature...

He is on day 7--so about halfway to making his own stem cells, yay!

Love you all. Thanks for all that you do.

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Bucky Update: 1/1/13

Hello family,

I saw Bucky today, he seemed to be doing well for day 4 of his transplant...of course what do I know...

His platelet count was ridiculously low, so he got some yummy platelets. Haha, they actually look pretty gross like sludgy apple juice.

The doctors say he is doing well.

He is beginning to get the mouth sores from the radiation and chemo, hopefully they won't get any worse. He really can't afford to lose any more weight.

He got a dose of methotrexate today (it's an antimetabolite...and I believe the same thing he got in his spinal taps).

He still has hair, but it is thinning rapidly. It's getting a little scraggly in the back, I think he is considering cutting his own hair.

I know this is a pretty boring update, but right now, boring is good...

Love you all. Thanks for your prayers.

Tara

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