AML: Day +20 Progressing

So I haven't posted for a bit.  Ma and Andy did a few for me when I was not feeling my best.  Almost 3 weeks now since my stem cell transplant.  It has flown by.  But then I look ahead and realize were only on Day 20 of 100.  Still a long way to go.  Then again, I just realized that I have been down here for 32 days already.  There were the 2 weeks leading up to the transplant.  Makes me feel a little better.

The throat pain caused by the radiation and the Methotrexate is mostly gone.  It takes some adjustment to transition from inpatient to outpatient.   I have very little stamina and eating is difficult.  But that should improve over the upcoming days\weeks.  So far about all i can tolerate is chicken noodle soup and Carnation instant breakfast drinks.    My intake seems to be getting better each day.  But I am only managing to put down about half the protein they want me to.  They want me to get 120g of protein each day. 

I have lost 25 pounds already.   I expect to lose more.  But the nausea seems to be getting better. 

Each day I am still going to the outpatient area at the hospital.  As things improve I will be able to transfer back to the clinic and not have to go in every day.  We pass our time with errands and watching things on Netflix. 

I should get to see the kids next week finally.  It's been difficult not seeing them for this long.  We appreciate the prayers and ongoing support.  Things are progressing nicely.   I am just looking for my appitite to improve and for my energy level to get higher. 

AML: Day +15

Day +15                                                                          

     OK, so I need to back up a little bit on my explanations from the other day……   I mentioned Jon’s WBC (white blood cell)  count and our first goal of 500…..   that wasn’t exactly right.   Sanford posted ANC on Jon’s board and Mayo posts  just WBC and I didn’t pick up on the difference.

  So I did some reading this morning……. White blood cells are made up of 5 different types of cells – one of which is  neutrophils --  thus ANC—Absolute Neutrophil Count – is the actual number of white blood cells that a person has to fight infections.

   Jon’s WBC count today is at .9    Normal WBC is between 3.3 – 8.7.   It is the ANC number that we want to see at that first goal of 500.   (Normal ANC is between 2500 – 6000).    ANC is calculated in the lab as a % of WBC.    The doctor told Jon this morning his ANC is probably around 450 ! 

  Everyone here says Jon’s  ‘numbers’ are looking really good.  Goal today is lots of walking and trying to eat.  …..  so of course, first thing that happens is that he got sick to his stomach.    But he’ll take more nausea meds and try to regroup.

  Actually, today was a pretty slow day --  Jon couldn't seem to get past the nausea.  But we'll hope for things to be better in that area tomorrow.   His improving numbers mean that those new little cells are doing their job.   Praise God!

Crys

Day +14

Day +14

We had a pretty good day here.   WBC was up to .8,  platelets were up to 46.  Doctor seemed pleased with the numbers.   

   Jon’s throat is still pretty sore but he did order some fruit at noon and ate a little cantaloupe and oranges.  Not a lot but it’s a start.  I think part of the problem is that nothing tastes good,  nothing tastes right  (side effect of the chemo).  But Jon knows that he has to eat and drink so he’s working on it.

  He still has some rounds of nausea but hasn’t gotten sick for a few days so that helps a lot.  

  He did his walks  yesterday and today.   (Nurse Kristin was pleased).  His mood is pretty good.   His voice is stronger in the morning.  Although he sleeps off and on thru the day, you can tell by evening his voice is more strained and he’s more tired.

  All in all,  things are pretty good.   God hears our prayers.

Crys

Day +13

The stage that Jon is in on this transplant journey is called ‘’engraftment”.  It is when the new cells begin their job and start building new blood cells for Jon.   The chemo/radiation wiped Jon’s WBC (white blood cells) out -- his count has been at 0.1 since Day +4 (5/8/12) --  this is as low as their machines register.  Yesterday, Day +11,  they jumped to  0.6  so ‘engraftment’ has begun.   The WBC today is  0.4 and the doctors were actually happier  with that.  They want to see small  increases.  Counts that jump too fast can be a sign of another of those problem syndrome/diseases that we want to avoid.    

    The first goal is to see WBC at 500 --  typically by Day +30.  Then Jon will be in a  ‘recovery’ stage while his counts continue to build and his body heals and recovers.

   They are not trying to keep Jon in a sterile environment.  Clean,  very clean, but not sterile.   I come and go from his hospital room, I do not have to wear a mask or gloves.   I wash my hands frequently and use a hand sanitizer every time I walk through the door.   The hospital staff uses gloves when they enter the room but that is because they are going from patient to patient.  Jon is encouraged to leave his room and walk around as much as he feels up it – he is tethered to an IV pole, so that limits him a little.   Jon wears a mask when he leaves his room and will wear a mask until day +100  whenever he goes out around the public. 

Our primary goal right now is for Jon to be able to drink and eat enough on his own to be able to stop the IV fluids/nutrients.   Then Jon will be able to leave the hospital again and go back to the Gift of Life Transplant House.    He’s working on it – each  day gets a little better.    The sores in his mouth are healing  and there isn’t much pain in his mouth.   The thick mucus that his saliva glands are producing is also getting a little better.  The problem is some nasty  ulcers  that are still in his throat.

  The nurse on duty here in the mornings is very good.  She’s funny, thorough, and challenges Jon.  She asked how many walks she could put on the board for today.  Jon said he would try for 2.  She put up 3 plus a shower.  Jon said “hey!” and she just laughed.   Jon thinks she and I are plotting together but he said it with a laugh -  his mood is definitely lighter too.  So Jon & I went for walk number 1 around 9^th floor.   In the hallway there was an older gentleman wearing a mask (a patient),  when he saw Jon he said,  “That’s it, that’s it.  You gotta keep moving.”   We did walk #2 this afternoon and I'll convince him to do walk #3 this evening so Nurse Kristin will be happy with him tomorrow.

   thanks everyone for your comments and prayers.

Crys

  

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!