Day +12

  A better day today.    It looks like some of the new cells are starting to make their presence known.  Jon’s WBC (white blood cell) count moved up a little today.  And so we watch and wait --  make sure  the old and the new can get along.   

  Jon felt better today --  at least better than yesterday.  Some nausea but he didn’t get sick.  Some headaches but not as much of the body aches.   His throat is a little better – he can talk a little bit better   --  he spoke to Andrea and to his dad briefly on the phone  -– but still not wanting to drink or eat anything.  

   Thanks everyone for your continued concern --  please keep the prayers coming.

Crys

Day +11

Day +11

Jon’s mom here again…..

  Some ups and downs today.   The doctor said that Jon’s blood cultures all came back clear, so no infections as of now.

   Jon had another round of nausea around noon.   It kinda wipes him out when it happens. 

  The doctors have been debating whether or not to give Jon his next dose of Methetextrate.  Since Jon had a slightly mis-matched donor he is at a greater risk of GvHD  (graft vs. host disease) and keeping Jon’s immune system suppressed with the Methetextrate  is a big player in that battle .  But methetrextrate can be rather toxic so it may increase the mouth and throat sores.   The team of doctors doing rounds consulted Dr. Hogan, Jon’s transplant doctor,  and the decision is that they will give Jon a half dose of the methetextrae.

Jon seems to be doing all right.  Each day seems to bring something new to deal with but he is managing and there is a great team of people here at Mayo  to help him.

AML: Day +10

Jon's Mom here.

 We had a bit of a set back today.  During  rounds this morning , the doctor told Jon they needed to switch his pain medicine to morphine.  Seems they have a shortage of the small canisters of the one he has been on – that is what they use on the push button for extra pain coverage.   Jon has had morphine before but evidently it  can be a tricky medicine.  It seems that this time Jon had an allergic reaction to it.  Shortly after they made the switch, he  got sick and threw up.  He had pain in his lower back and abdomen and was pretty shaky .  They  took the morphine away and gave him benedrryl for the reaction.   They put him back on his other pain med and the benedryl has kept him sleeping most of the afternoon.    He told the last nurse that came in to check on him that he is beginning to feel like he did before this morphine thing started.   So hopefully we are back on track.

A little side story:    I left here about 8:45 last night.  I had  just gotten the car out of the parking ramp and there were suddenly fire trucks and emergency vehicles coming from every direction.  I couldn't see or smell a fire anywhere so didn't think too much of it.    It’s a big city.     This morning I was in the family lounge room to get some water and one of the nurses came in.  She said someone had put something in the  microwave last night and walked away --  the container had metal on it and  "pow"  ...smoke, sparks, flames..   That was where all the firefighting equipment was going...  just two doors away from JON!!   

 It didn't do much real damage that I could see…...  microwave was gone today.   The nurse said it was quite smokey last night but I couldn't smell any smoke or anything, although the room is sealed off this afternoon and I can hear some pounding and repair work going on.    Jon said the ventalation system went off in his room but he didn’t get any of the smoke because it is a sealed room that doesn't allow outside air in.   Impressive response though!

AML: Jon – Changing of the Guard

So Andrea went  home to be with the kids and to go to work for about  10 days and I (jon’s mom) am here with Jon.  My sister, Rogene, road along with me yesterday and then road back home with Andrea.  It was a lot of riding for her but  Andrea and I sure appreciated the company.

 Jon is still in the hospital so they can help with the sores and pain in his mouth and throat.  He has a small med patch behind his  ear that seems to be helping with the nausea – but then he hasn’t eaten anything and drank very, very little since last Thursday.   They have him on lots of IV’s – , antibiotics,   fuilds and now nutrients too.   Also blood and platlets as needed. 

He gets pain meds that way also and also has a button he can push to get extra as needed.  When we got here yesterday,  he said the pain was manageable but from the look of his eyes I think that was a little  questionable.   He was talking just a little bit though and Andrea said he hadn’t been pushing the button for the  extra pain med much.    

But  about 7 last night they brought in his evening meds – some they can give thru the IVs but a couple he has to take orally and these particular pills can’t be broken up or crushed – they need to go down intact.  Watching him struggle for 15 – 20 minutes to get those pills down and deal with the increased pain was almost more than this mom could handle .   

Jon’s own white blood cells were destroyed  by the chemo and radiation, and they are keeping his immune system suppressed to accept the transplant, and these new stem cells haven’t had time to get to work yet, so Jon’s body really has no way to heal itself of these sores in his throat.  

Unfortunately this little cycle of keeping the immune system suppressed to give the new stem cells time to take hold isn’t anything they can rush  so the throat pain isn’t likely to go away for awhile –it may get worse before it gets better.

 But Jon is strong,  our faith is strong,  and the power of all your prayers is strong, so God will help  us through this.   We just have to take one day at a time, and some days just an hour at a time.

AML: Day + 8

It's been a long couple of days, but things are going to get better.

Jon was hospitalized on Thursday due to terrible pain when he swallowed. This is 'normal' but Jon's pain was severe. He is now on a constant drip of pain meds.  So the pain is being well-managed. Due to the pain, Jon's been unable to eat, drink or swallow any meds by mouth.

Jon's counts have bottomed out. So he will most likely be in the hospital until his counts start to rise since right now his body can't heal. That could be a week or more. But he's in good hands.

Otherwise Jon is good. Your prayers have helped - his nausea has completely disappeared.

I head home today to play with my babies (and work) for the next 10 days. Jon's mom Crys is on her way here.

We love you all. Thanks for the prayers and keep sending them our way.
Andy

AML: Day + 6

Well Jon was admitted to the hospital today. Unfortunately he is having very bad throat pain so drinking, eating and taking his meds are very hard to do. But its good that he's here. The doctors are able to give him meds to help with his pain. And now they can monitor his nutrition far better than I could. On a positive note: he woke up this morning with absolutely no nausea. So those prayers have worked!!

AML: Day + 5

Well it was a long day at the hospital today. It started off with Jon's daily appointment at 9:30 a.m. The doctor decided Jon needed a bag of IV fluid to keep him hydrated, when that was almost over we found out Jon's hemoglobin was low so he got a bag of hemoglobin which took about an hour and a half and then we found out Jon's magnesium was also low. So Jon got a very slow drip of magnesium which took 4 hours. We were at the hospital from 9:20 this morning until 6:40 tonight. So it was a VERY long day.
Jon's counts have bottomed out which they were supposed to, which means he's feeling very tired, and very weak. On top of that, he has mouth sores and a sore in his throat. So he doesn't feel like eating, but he has to and his tastes are off, so that makes it worse. Plus he is still nauseous too.
Not a great day today. Wish I could say that tomorrow will be better, I'm praying it is.