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!

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.
 

Uplifting: John 5:4

So I get a email from my sister this morning.   She woke with the sudden need to refer to John 5:4 in the Bible.  Remember 5/4 was the day of my transplant.

Here is the passage for John 5:4

For an angel went down at a certain season into the pool, and troubled the water: whosoever then first after the troubling of the water stepped in was made whole of whatsoever disease he had.

Now... What do you think about that?  

AML: Day +3

So I didn't post yesterday.   Not much to tell.   Today is similar. 

I go to the hospital at 9:30am each morning for blood draws and injections or whatever else I may need.  Every other day I get a dose of methotrexate.  It's a low dose chemotherapy that is supposed to suppress my existing immune system while the new on takes hold. 

For the next 7-14 days, by counts will be falling and then we expect to see evidence that the new cells are taking over.  Once the new cells take over, we start monitoring very closely for Graft vs Host disease.

The doctor that I saw today (I see whoever is on the floor when I am there) says I am doing quite well.  So that is  good news, I guess. 

I am having trouble eating and consuming enough liquid on my own.  So they put some IV fluids in me today. That should help with some of the lightheadedness I experience when standing (my blood pressure drops big time when I stand).   I did manage to get down a decent portion of Famous Dave's BBQ (chicken) today.    So if Famous Dave's is what I'll have to live on for the next few months.  I guess I can manage.   

Calorie heavy beverages are working pretty good.   Smoothies (the ones you see on TV where you add juice) and the Carnation Instant breakfasts have been helping be get some calories.  Starbucks or Caribou coffee seems to work as well.  Tons of calories there. 

The days seem to be passing quickly, so far.  But such a long way to go.  Thanks for all the prayers.  I am doing well. 

AML: Day +1 , Out patient

Got out of the Methodist hospital about 11:00.   Nothing all that eventful today.  Still having stomach issues.  Tough to keep anything down. 

It was a nice relaxing afternoon at the house though.  Was doing fine with keeping things down until I tried a little supper.  Oh well.  I think this will be the norm for a while.  I just need to stay hydrated enough to stay out of the hospital. 

Had to return to outpatient tonight to get an injection of methotrexate.  It is a chemo drug, but is given in such a low dose that its used in my case to control graft vs host disease. 

They are trying more antinausea drugs....  Perhaps we can find something that works. 

Other then the stomach issues, all else is good.  I wonder what all those new little cells are up to. 

AML: Day 0, Happy Birthday

So all the nurses here called yesterday (may 4th) my new birthday. 

The day was pretty basic.  Just lots of meds and waiting.  I still get sick to my stomach every time I get up.   None of the meds seek to be making a difference.  I'm pretty comfortable if I just lay down or sit still.

About 3:00 they started me on premeds for the transplant.  Lots of fluids and more anti rejection stuff.  Most all goes in my IV. 

Roughly about 730 my cells shoes up.   More drugs, tylenol, Benedryl and hydrocodone.  All just to make sure there was no reaction to the cells. 

The infusion of the stem cells was very simple.  They use a gravity drip because they don't know what going through an IV machine would do to the cells. 

It cells only took about a half and hour.  I was told there were about 7 million cells.    Other then the Benedryl making me both sleepy and fidgity.   That passed in about an your and I also the night.   So far so good.  

AMP: Day -1

So a bit more of the same today.  Radiation is over.  I am glad to be done with it.  The procedures were uncomfortable. 

I have some general bone and muscle pain.  Nausea is an issue.  Appitite is becoming an issue as well.  But it all going fine.  Hopefully things will get better as we get further from the treatments. 

My cells will arrive tomorrow at about 5 tomorrow.  If things are are on schedule, I should get them tomorrow at about 7pm.

There is another gentlemen here, Dale, that is on the same schedule as me.  He will get his transplant tomorrow as well.  Turns out they have family (kids) by Yale, but are from Rochester.  Small world.  Please add Dale and Jean to your prayer lists.   Couldn't hurt to have a few extras prayers bouncing around these walls. 

The Methodist hospital has been comfortable.  Staff has been great.  I am ready to be out.  Sometime Saturday probably. 

Big day tomorrow.  They keep calling it my birthday around here. 
 

AML: Day -2

Short one today. 

Just 2 more sessions of radiation left.  They are making me tired and I am getting sick occasionally.   Don't  know if it is the chemo or the radiation. 

I had a hemoglobin of 8.3. So they gave me a unit today.   Lots of resting today. 

Hiccups still an issue. 

They started Tacrolimus today.  It is is a drug to prevent graft vs host disease.  So it is preconditiong for the transplant.  It means I am attached to my IV again and will be until I am out of here. 

Doing ok, but ready for the next step...  Tomorrow should be pretty much more of the same as today. 

AML: Day -3, Am I glowing?

Best thing of today.  Catheter came out at 7:00 this morning. 

A light breakfast and then radiation at 9:30.  This is a full body radiation. I sit in a chair  strapped in with little sensors to track how even the radiation is traveling through me.  I sit for 12 minutes getting nuked from one side, then they turn me around and hit me from the other side. 

The actual treatment is uneventful.  I fell asleep.  I am a good medium rare with they pull me out.  They tell me I'll get a little "sunburned" from the course. 

After the radiation and free from the IVs, I got a pass from the hospital.  So Andy and I went back to the transplant house and relaxed.  Some friends of Tom my Aunt Rogene's from Yankton stopped by.  He had a double lung transplant and they were in town for a checkup.  It was good to visit with them.  They are staying in the Gift of life house too. 

We had a late lunch and I headed back for the 2 dose of radiation.   Skins a little pinker.   I mentioned I was nervous about the radiation.  Not so much the actual treatments but the side effects are what I am worried about...

I did get sick to my stomach today.  I think it's mostly because of mild nausea, but the hiccups set me off.  I am still dealing with them.  A side effect from one of the meds.   For some reason my hemoglobin is at 8.  It should not be that low yet.  They will check tomorrow and give me a transfusion if needed. 

No more passes for the rest of the week.  They start me on more conditioning for the transplant... so I will have a 24 hour IV again... bummer.  Still I should get out on Sat.  So I can manage. 

Going through Xbox withdrawals...  Enjoying having Andy all to myself.  Missing by babies.