The next 100 days are very critical and will let us know if the transplant was a success or not.  There will be alot of ups and downs, feeling good and bad, a variety of emotions, painful sores, fever, and each and every single day will be a roller coaster of physical and emotional agony.  What happens in these 100 days is basically what every transplant patient experiences.  Due to the individual, it does vary as to the extent of pain and the time frame.  For those who have never experienced a loved one with leukemia or having a transplant, or for those who may know someone with this aggressive disease, I will put it into laymen terms so you can better understand the daily suffering these individuals must go through just to stay alive. 

DAY 1 - Weds, Jan 23

Charlie actually looked really good today.  Said his stomach and chest weren't really bothering him, as they were before and during the transplant.  He is on morphine medication through his Hickman IV to lessen his pain.  He is also receiving all his nutrients, antibiotics and hydration this way.

DAY 2 - Thur, Jan 24

Didn't seem like he felt too good today.  Said his face and feet were burning and like they were on fire.  Doctors believe he is extra sensitive to the medications.  His head was hurting also.  Morphine & oxycodone didn't help, so he requested tylenol.  Got hiccups every time he drank water.  Told to raise back of bed to 30 - 45 degree angle to help with this

DAY 3 - Fri, Jan 25

His skin is really itchy and he's scratching alot.  This is probably due to the pain medications.  He wanted me to bring in ivory soap and aveeno lotion, which I did.  He now has mucositis which causes the mouth and throat to become very sore and possibly blister.  He needs to rinse with saline, swab his mouth and vacuum it several times a day.  It is so sore he can't even drink water anymore.  He has been on TPN (total parenteral nutrition) since he hasn't eaten since last Tuesday - over a week ago.  He is also receiving blood transfusions.  He was actually in a pretty good mood and we talked for 2 hours.

DAY 4 - Sat, Jan 26

He is now taking all his medications through the IV, as his mouth is so sore.  The mucositis is getting worse and the doctors say it normally lasts 5-10 days.  It is very painful.  They are putting him on an iv medication to help with the itching.  He woke up 5-6 times last night in pain, and once was choking on his own vomit.  They are increasing his morphine.  His Hickman is a little red and tender.  Charlie now has no immune system and it is called neutropenic.  When I left he didn't look like he felt very well.  Called around 6pm and he spiked a fever of 101.3.  The doctors were waiting for this.  It dropped to 100.9.  Called back at 8pm and it was back up to 102.4.  They hooked up another antibotic through his iv, were giving him tylenol, checking on him every 4 hours and getting him a warm blanket.  I went back in at 11pm when they woke him up again to give him tylenol.  He started vomiting again, violently, felt like his fever broke he said, and they gave him some ativan.  Left around midnight as he was drifting off to sleep

DAY 5 - Sun, Jan 27

Went in around 9am to catch rounds, missed them, they did them early today.  Charlie was sleeping, filled in his count chart.  His agran, which is his stem cell count, was down to 20.  (500 is the magic number - under that he is neutropenic)  We want to see this climb uphill.  His fever was running a steady 100, we want to see this climb downhill.  The high of the day is called the T-Max.  Came back at 2pm his fever spiked to 103.7.  They gave him tylenol.  He got sick again.  This is becoming the normal daily routine.  He's on a new antibiotic, vancomycin.  This is his third antibiotic.  Asked nurses for ice packs, he was still burning up, so asked if there was anything else they could do.  They hooked up a cooling blanket for him to lie on and set the temp to 60.  Asked them to check his temp again and it was down to 102 and falling.

DAY 6 - Mon, Jan 28

Made it in for rounds at 8:30 am.  His fever broke overnight, it was at 98.6.  He looked very tired.  Doctors suggest he use a hypoallergenic soap for the itching, (not ivory) as he cannot afford any bleeding anywhere, being neutropenic.  His mouth is getting worse.  He cannot even brush his teeth or floss, due to possible bleeding.  This would open him up to infections, which at this point could kill him.  Watching for Graft vs Host Disease (GVHD).  Basically, the new bone marrow he received is going to war with his body and attacking it with everything you can imagine (from guns to nuclear bombs).  That is the easiest way to describe it.  We are hoping the new bone marrow/stem cells win.  This is his worse nemesis - GVHD.  He can get this at any time within the next 1-3 years.  He must get up everyday and walk around, mandatory daily shower, change clothing & bed linen, due to no immune system and being neutropenic (agran is negative today -40) and still dropping.  Went back in around 2pm & stayed until 6pm.  He seemed like a totally different person.  Talkative and joking.  He received some platelets today, as those were very low.

DAY 7 - Tue, Jan 29 (agran -50)

Made it in for rounds around 9:30 - 10:00 am.  Doctors are watching anti-biotics, he is also receiving anti-fungal & anti-bacterial iv's (Voriconazole & Acyclovir).  Taking Ursodiol to help protect his liver.  Agran dropped even lower, -50.   Switched pain medicine to Dilaudid, morphine wasn't working for him.   Starting to lose hair, checks very, very swollen and painful.  I attended coaching class today.  These are held for the care givers every Tuesday.  Today was for nursing, taught by MaryAnn.  Already attended the dietician class with Barb and Pharmacy with Jeff.

DAY 8 - Wed, Jan 30 (agran -50)

Rounds were at 8:30.  He's in a grumpy and argumentive mood.  Lost almost all his hair.  Very itchy all over today.  Pretty much same as yesterday.

DAY 9 Thu, Jan 31 (agran -30)

Skin looked better, not as dry.  Pateakia?, red spots here and there.  No hair.  Possible sinus infection, nose keeps dripping.

DAY 10 Fri, Feb 1 (agran -10)

Had a bad night last night.  Not sleeping well at all.  Keeps waking up in severe pain, several times an evening.

DAY 11, Sat, Feb 2 (agran 0)

Added blood pressure medicine this weekend, running a little high.  Finished 4th and last treatment of methocate.  No fever, mouth and throat still very sore.  Mucositis increases with this particular treatment over the next three days, but it helps prevent GVHD coming in too soon.

DAY 12 - Sun, Feb 3 (agran 0)

Top of head tender.  Moody and grumpy.  Feet swollen.  Labored breathing while sleeping.  Fever of 100.1.  Drew blood to test if virus or bacteria breeding, none were.

DAY 13 - Mon, Feb 4 (agran 0)

Definitely feeling better today, disagreeing with  mom (normal - yes).  Breathing sounds alot better.  Puffiness going down in cheeks.  Hopefully his agrans will start to go up soon.  Day 7 - 14 is supposed to be the worse.   Has not been an easy week for either of us.

DAY 14 - Tue, Feb 5 (agran -10)

Went for chest x-ray, this is normal.  Mouth isn't as swollen, but still very sore.  Hurts to take pills and water actually burns.  Feels like a chunk is coming off his throat whenever he takes pills.  Kind of out of it this morning, nodding off.  Good thing, means pain medicine is working.  He is sleeping now.  Getting ready for coach class with Linda and Dawn from 11-12, this one is for long term information, Post-Transplant.  No, he cannot have his pot belly pigs until after a year.  He wants two of them as pets.  Came back in around 3:30 and visited for about an hour.  Called twice when I got back to apartment, he was sleeping since I left, according to nurses.

DAY 15 - Wed, Feb 6 (agran 0)

Rounds were 8:30 am.  Charlie was sleeping prior to and right after rounds.  He took oxycodone & benadryl yesterday to help with pain & sleep.  Coughing up chunks, told these are dead cells from his throat and mouth. Scared him, didn't know what it was at first.  Doctors say he's starting to graft.  This is good.  Hopefully agrans will start to go up.  Nurse Donna says he has the best lungs they've heard.  Swelling is starting to go down around his cheeks & mouth isn't as sore (although still very painful for him).  He is moving along great, according to doctors. 

DAY 16 - Thu, Feb 7 (agran 0)

Rounds were 9:30 am.  Mon & Wed they are at 8:30 am, Tue, Thur & Fri they are at 9:30 am.  Weekends we never know, but usually early.  Charlie was awake today.  Doctors say his mucositis is starting to clear up finally.  Counts are still low, but this should start to change hopefully soon.  His red blood count was low, so they infused him with two units of blood.  His energy levels have been very low lately, sleeping alot.

DAY 17 - Fri, Feb 8 (agran 0)

This is definitely a long and slow process.  Had dry heaves this morning.  Pain level in mouth and throat went from a 4 to a 9 (0 being the least amount of pain).  Has slight fever of 99.7.  Aside from receiving the two units of blood yesterday, they infused him with one unit of platelets last night.  Very long night for him.  His platelets were down to 11 pre-platelets, 53 post-platelets.  Still very tired, cheeks still look swollen, throat still very raw.  Sleeping right now.  Charlie has now been inpatient for 3 weeks. Getting night sweats for last 3 days.

DAY 18 - Sat, Feb 9 (agran 100 - yes!!! NO - This number was incorrect - computer error.  Not sure what agrans were today.)

Hospital computer messed up my website, sorry for the inconvience.  Missed rounds.  Got here at 8:30 and they did them early.  Caught Dr. Bill, as Charlie was sleeping.  Night sweats are due to stem cells grafting, counts are starting to go up.  This is definitely good.  No other changes, which Dr. Bill says is good sign.  Energy levels still a little low, but this will change when counts continue to climb.  He has been sleeping since I got here.  Went into room around 9:30 and he was awake & vomiting green and yellow bile.  Head was killing him, pain level through the roof.  Not feeling well at all.  Very irritable, sore and tired.  Slight fever.  They gave him ativan and tylenol, for nausea and pain.  Coughing up a lot of blood.  Came back in around 3pm until 6pm, he slept whole time.  Couldn't concentrate earlier on computer, very frustrating for him.  Just a bad day overall, other than cells grafting.  He turned away phone calls.

DAY 19 - Sun, Feb 10 (agran 10)

Agrans back down, this is to be expected.  His immune system will slowly start to rise & fall, like the stock market, hopefully on a gradual incline.  Still has slight fever, nausea and pain.  Had a really bad nose bleed this morning.  This was due to his platelets being very low & the reading was incorrect.  They infused a unit of platelets this morning.  Still on a lot of pain medicine.  Falls asleep sitting up at times or in the middle of a conversation.  A lot of the visits I just sit and read in his room while he sleeps.  Went down for a cigarette yesterday and he knew I was gone, asked nurses where I was, so when he does come to, he is aware of his surroundings, but then usually slips back asleep within minutes.  Had rigors or chills today.  They gave him a heated blanket.  He is sleeping right now.  According to doctors, he may be out of the hospital by next Friday.  It just depends.

DAY 20 - Mon, Feb 11 (agran 40)

Energy levels are still very low.  Received a unit of platelets this morning.  Receiving a unit of blood sometime today.  His Hickman IV is sore and tender.  Unfortunately, it's not on the outside that hurts, it's the tunnel underneath his skin that is bothering him.  They may have to possibly remove the Hickman and put back in the PICC Line (on his arm).  He's not too happy about this.  They are changing his anti-biotic to a different one, possibly to help with the Hickman.  They didn't indicate whether it was infected or not.  I don't think they know for sure why it is hurting.  Still coughing up blood.  A little irritated today.  His friend Jason Copas came in to visit with him last night.  He seemed in better spirits about this.

DAY 21 - Tue, Feb 12 (agran 30)

Lat night was a bad night.  Platelets low again, received a unit this morning.  His fever spiked up to 104, his tunnel in his Hickman IV is getting worse, definitely infected and they are removing it today and putting his PICC Line back in his arm.  They think there is a bacteria along the silicon part of the Hickman or the tip, right near the heart, where it goes in.  Sleeping all morning, unless vomiting, even after ativan (anti-nausea medicine).  Just wants to sleep, feels awful.  Last time they checked his temp it was 102.7.  Drenched with sweat from fever.  Soaking towels.  Went to coaching class (social services) from 11-12, then back to room.  Now 1:15 and they are removing his Hickman IV and putting in Pick Line.  I had to leave the room for this due to sterilization measures.  Well, the IV people had to take 3 x-rays.  Lost the first one? Once pick line was in, they had to come back & re-adjust it, it was too short, hence 3rd x-ray, then they had to come back again and re-adjust the line again, too long.  Thank God Charlie's regular nurse Donna, who was removing the Hickman, was nice enough to stay later just to do this for him (which was very painful).  It was a tube and looked to be about 2 foot long which was inserted inside him.  It took until 5:30/6:00pm before she was able to remove the Hickman, she had to make sure the pick line was working properly first. Long day.

DAY 22 - Wed, Feb 13 (agran 90)

He was grouchy during rounds and pulled covers over his head right afterward.  This means he doesn't want to be bothered.  Hung around for about 1 1/2 hours & went back to apt.  His fever is still slight, vomiting and nausea throughout the day.  Came back in at 3pm - 5pm and he slept whole time.  Seems irritated.

DAY 23 - Thu, Feb 14 (agran 130)

Still getting fevers, whole body is tender to the touch, even hurts to take a shower, sweating alot.  He's getting tired of feeling like this.  Graft is starting to take, but it's very slow, which in the end is better for him, even though he doesn't feel like it is right now.  Less chance of GVHD, even though he will still probably get some.  Spot where Hickman was removed is still sore and red, but came back negative.  Has a persistent cough, but doctors feel this is due to drainage from the mucositis, which is slowing clearing.  He thinks it's in his lungs, but the x-rays keep coming back clear.  Still cannot drink fluids or eat any foods.  Doesn't look like he'll be leaving Friday (tomorrow) like they thought.  Fevers keep setting him back.  He threw up 3 times just today.  Starting to wear him down emotionally, physically and psychologically.  I spent the night with him in the blue chair in his room for emotional support.

DAY 24 - Fri, Feb 15 (agran 190)

Slight fever, nausea, vomiting already this morning.  Platelets are low so he'll be receiving a unit of these this morning.  Area where Hickman was removed looking much better, was definitely infected, labs came back positive.  They're going to do a CT Scan sometime today.  Persistent cough & vomitting.  May be due to drainage - not quite sure.  Feels awful in morning, but usually by midday looks to be feeling a little better.

DAY 25 - Sat, Feb 16 (agran 440)

His counts are coming up, this is good news, but Charlie isn't feeling it.  Walked in to him vomitting.  This is becoming a morning ritual.  Dr. Schubaugh thinks he may have a touch of GVHD and it is just affecting his gut.  GVHD can also affect the skin and the liver.  He is still running a low grade fever and having night sweats.  Waiting on results from CT Scan to see if they indicate anything.  Still has cough and sneezing today.  Half the staff is sick though.  What do you do?  They are usually short handed as it is.  Talk about a catch 22.  They want to try to get him on some kind of soft food hopefully this weekend, but Charlie knows he'll throw it up immediately.  They suggested him taking ativan (anti-nausea) prior to eating and putting him back on a daily anti-nausea medicine.  Lowering his doses of pain medicine gradually.  Mucositis is starting to peel away through spit and bowel movements.  Mouth is starting to look alot better.  White blood cell counts are starting to climb, but platelets still remain low.  They say these take the longest to come up in counts.

DAY 26 - Sun, Feb 17 (agran 720)

Charlie is no longer considered neutropenic, now that his agrans are over 500.  They did an upper GI tract scope around 4:15 today and some biopsies and they determined that he does have GVHD in his gut.  This is why he was vomiting two or three times a day.  They will start to treat this tonight with iv steroids.  He is still unconscious at the moment and in recovery.   Received two units of platelets.

DAY 27 - Mon, Feb 18 (agran 1100)

Charlie has discontinued to take his pain medicine.  He is experiencing withdrawal symptoms.  He still continues to sweat profusely.  They feel this may be due to the GVHD in his gut.  He is and will be on steriods for awhile now to treat this.  They did a skin biopsy to see if he has GVHD on his skin, even though it looks good.  During the upper gi scope yesterday, he was not completely unconscious and remembers everything.  It was very painful, he felt the scope going down his throat, them taking the biopsies from his stomach like they were pulling his stomach off from the inside out, he felt it all.  He was in agonizing pain all day today, due to this.  They started him on some kind of oral oil to help coat his stomach, (found out it's corn oil steroids) so he can start to eat real food.  He ate applesauce & saltines and threw these up later in the evening.

DAY 28 - Tue, Feb 19 ( agran 2400)

His agrans are soaring, but he still does not feel very well.  His white blood counts are also climbing, but he still has to be able to eat real food and keep it down. He did eat strawberry yogurt and drank ensure.  So far, so good.  He is now on methodone to help with the discontinuance of the pain meds and to help with the withdrawal symptons.  Still talking the corn oil steroids orally, 4 times a day to help coat his stomach.  He actually looks really good today, smiling, relaxing, looking like his normal self.

DAY 29 - Wed, Feb 20 (agran 3800)

Rounds were at 8:30 am.  He looks and feels 100% better.  Not sweating as much or running fevers.  Jeff, the pharmacist, says this is due to the high dosage of steroids he is on, they give him an energy boost.  He will have to be on steroids for a few months and slowly weaned off of them.  Ate a grilled cheese sandwich, applesauce and drank ensure & kept these down.  This is a good sign.  He is eating not so much that he has an appetite, but more so that he can be released from the hospital.  Tomorrow is 5 weeks since he has been inpatient.  That's a long time.

DAY 30 - Thu, Feb 21 (agran 4500)

Rounds were late today, the staff had a 2000 person, worldwide conference call.  Charlie had to have a bone marrow aspiration before he could go out on a day pass.  He is finally allowed to come home to the apartment for a few hours now that he is eating and keeping the food down,  They gave him demarol prior to the bone marrow aspiration, to help ease the pain associated with this procedure.  It is awful.  It basically looks like they are forcefully screwing a 2-3 inch metal tube into his hip bone in the back.  It's very bloody and extremely painful even with the demarol.  They pulled out some liquid bone marrow for testing and then an actual piece of bone.  Once allowed to leave, Charlie had to apply sunscreen SPF 30 (at least) to any parts of his body that are exposed to the sun.  He will have to do this for the rest of his life, as the sun can cause him to get skin GVHD.  They suggest he get a wide brimmed hat, wear long sleeve shirts and long pants any time he is in the sun, even riding in a car.  He was allowed out on his day pass until 6pm, which at that time he went back to the hospital and was thoroughly drained.  Just getting dressed, walking up & down the stairs, being out in the fresh air and out of bed is exhausting for him at this time.  It will take quite awhile before he can do normal daily tasks without tiring out.

DAY 31 - Fri, Feb 22 (agran 5000)

Rounds were late again today.  This was a good thing, because they forgot to infuse Charlie with his tacrolimus (immuno-suppressants) prior to his day pass.  That took about an hour.  Dr. Harris said his agrans being at 5000 is just like a normal persons, so this is wonderful.  White blood counts are up to 6.3, platelets are finally at 30, without him having to be infused.  We were both shown how to use the portable IV pump, which he will need to have once he is released from inpatient, which will hopefully be Monday or Tuesday.  They don't release on the weekends, although he may get overnight passes tomorrow and Sunday.  He is allowed out until 8pm tonight.  At 5pm he went to take a nap.  He gets tired very easily.  Dr. Harris also stated he may need to continue to receive insulin (as shots when released) as he has drug induced diabetes.  He's not diabetic literally, just from the surgery, so they have to check his sugar levels.  He is taking most of his medications in pill form now, but still needs one or two medications through his IV.

DAY 32 - Sat, Feb 23 (agran 5500)

Day pass again today until 8pm.  Got out of there somewhere around noon.  Dr. Chauncey is the nice doctor, that's what Nurse Donna says.  He kind of grows on you after awhile.  He is from the Fred Hutchinson Center.  His concern for his patients is evident and he seems to be very meticulous.  Can tell Nurse Donna & Dr. Chauncey have worked together for a long time.  They seem to be in sync with each other, their patients and their devotion to their work, along with his (fellow) Dr. Bill Harris.  It's very impressive.  The whole staff overall is wonderful on the BMTU (bone marrow transplant unit).  Stephanie, the receptionist has been great to Charlie and I.  There are just too many to name.  Like I said, they are great people and feel like family after all this time.  Charlie is starting to eat better and keep his foods down.  This is good.  Has a cough, not sure why.  Apparently someone has pneumonia on the floor, so we have to stay away from other caregivers and patients.  Charlie has a good day at home in a normal atmosphere.  It helps boost his moral and his attitude.

DAY 33 - Sun, Feb 24 (agran 6700)

Overnight pass, took forever to get out of hospital.  Didn't leave until around 3pm.  Had to learn how to use IV pump for TPN just for tonight for extra nutrition.  Takes about 6 1/2 hours to infuse.  Charlie has to take about 15 different medicines in the morning and dinner hour.  There are a few in between during lunch and bedtime.  It's great to have him back at the apartment and he seems to being doing so much better in the home atmosphere.  We didn't do much.  He played WOW on the computer, I cooked and cleaned.  We lead a very quiet lifestyle right now.  He is not to be around crowds, due to possible viruses or bacteria, so we are just as happy to stay here.  Still has persistent cough.

DAY 34 - Mon, Feb 25 (agran 10600 - high)

Released from inpatient finally.  Brought home lots of meds and all his belongings.  Still has persistent cough.  This is starting to worry me.  They said his lungs are the best they've ever heard, his chest x-rays don't show anything, he had to cough up a sample and those tests came back negative, so we don't know why it is still hanging on.  Possibly due to the GI tract and some mucositis hanging on.  Hospital called and told him not to take tacrolimus meds tonight, his glucose was a little high, so to skip the dinner dose.  We have to go in every morning this week so they can draw blood and check his counts.  Car broke down today on the way home from the hospital.  Coolant system problems, smoking like a chimney, in garage.

DAY 35 - Tues, Feb 26 (agran 9700 - high)

Took cab to hospital, had to be there at 9am for blood draws.  Gave Charlie his 15 medications before we left.  He's so good at taking these.  Needs to start taking penicillin as a preventitive medication on Wednesday.  He was supposed to start this tomorrow, but it wasn't ready at the pharmacy yet.  Jeff, the pharmacist, said we can just get it on Thursday, one day won't hurt.  They are actually giving us a day off tomorrow (YES, first one in over 2 months straight we don't have to see the hospital)  Charlie's doctor, Dr. Harris, last day is this Friday.  They rotate doctors out here alot between different hospitals, so we will definitely be in there Friday to say Thank You and goodbye to him.  Don't know if we'll ever see him again, but he was great.  Very good bedside manners and informative.  Then again, Charlie and I were not afraid to ask any questions and wanted to know as much as possible.  Hospital called, lost all patients blood tubes, have to go in tomorrow.  They're calling us a cab, as car is still in garage.  Still has persistent cough and spitting up green/yellow mucus.

DAY 36 - Wed, Feb 27 (agran - day off, no blood draws)

Hospital called at 8:15 am, found blood tubes, don't have to go in.  Do get first day off in over 2 months from going to hospital.  Gave Charlie his first dose of meds at 8:30 am and let him sleep in, finally.  This is his list of medications he has to take every single day:

Acyclovir 800 mg - twice a day one year post-transplant to prevent viral infection

Amlodipine - 3 tablets daily to prevent high blood pressure

Beclomethasone - 4 times a day to prevent GVHD (which he has in his gut)

Budesonide - twice a day to prevent GVHD

Dextromethorphan - 12 hour cough syrup (not helping)

Folic Acid - once a day for vitamin supplement (after done with TPN)

Maalox Max Antacid - twice a day for magnesium supplement

Multivitamin Tablets - (No iron) one tablet daily (after done with TPN)

Omeprazole - twice a day, prior to meal, to prevent stomach acid

Penicillin - 3 tablets twice a day to prevent infection (wed thru sun)

Prednisone - 2 tablets every morning to prevent/treat GVHD

Prednisone - according to taper schedule to prevent/treat GVHD

Sulfamethox/Trimeth - twice a day on Mon & Tue to prevent PCP pneumonia

Tacrolimus - 1.5 mg in am (after blood draw) - evening dose varies

Ursodiol - 2 tablets, twice a day, for liver

Voriconazole - twice a day to prevent fungal infection

Lorazepam - every 4 hours as needed for nausea

Ondansteron - every 8 hours as needed for nausea

Sunscreen SPF 30 ***every day for rest of life when in the sun***

Saline syringes - flush pick line in arm twice daily

Zolpidem - at bedtime as needed for sleep

DAY 37 - Thur, Feb 28 (agran 8100 - high?)

Other than continual cough and feeling like crap, Charlie is doing excellent.  Finally got car back last night, still has oil leak and needs more repairs.  Blood draws were at 9am, rounds at 9:30.  Barb, dietican, gave him pamphlet to help increase calcium intake.  Needs to get plenty of fluids, a variety.  Gatorade is a good one, too much water she stated can be bad for certain levels.  Waited about 2 hours for new cough medicine.  He's now taking Tussin DM cough, alcohol and sugar free.  Hope between this and the penicillin he started taking today that the cough will go away.  Spoke with Cathy, social services, about possibly getting outside funds to help with increasing bills.  Old apartment is still charging him $750 for not giving a 30 day notice, needs funds to help with moving back home (U-Haul and gas), car expenses (may need new one, his is 15 yrs old), food, phone, clothing that fits. Mom had to quit work for 3 months and has no income at all.  There are various side effects he may experience due to medications such as seizures, tremors, nausea, fever, etc.  Charlie needs to get a wide brimmed hat (VERY IMPORTANT) to help cover exposed areas of skin.  Needs to wear this EVERY day while outside, whether it's cloudy or sunny.  Both of us were wore out and took naps today.  Charlie is supposed to get daily exercise, as prednisone will tear down his major muscles.

DAY 38 - Fri, Feb 29 (agran, not back yet)

Gave him his morning meds and we went to the hospital around 9:45.  Rounds run later on Fridays, as the staff goes over "every single" patient.  Today is Dr. Bill Harris' last day, Charlie's fellow doctor.  He'll be back in April, prior to Charlie moving back home to PA in beginning of May.  We figured 100 days out is May 1.  They said to give or take a week or so.  This depends on Charlies condition at this time.  He is doing so well.  Tried to find REI Store (outdoor/camping store) for wide brimmed hat and ended up downtown near fish market.  Not a good place for him to be.  Too many people, fresh flowers, produce, seafood.  We left.  Directions to REI were incorrect, so came back to apt.  This is a list of the 13 danger foods Charlie and his caretaker must be aware of:

1) lettuce

2) water

3) raw sprouts

4) unpasteurized juices, milks or cheeses

5) moldy peanuts

6) raw or undercooked shellfish

7) swordfish, shark, king mackerel and tilefish

8) caesar salad

9) wild mushrooms

10) raw homemade cookie dough

11) rare hamburger

12) turkey and stuffing

13) shakes and eggs

DAY 39 - Sat, Mar 1 (agran - no blood draw yesterday)

We have the weekend off - or do we?  The hospital called around 11am and wants us to come in for a blood draw.  They didn't do one yesterday, just tacrolimus counts.  When they call, we go.  Especially if it's Dr. Chauncey.  Charlie stayed up until about 3am last night and did NOT want to get up.  This was definitely a process for mom.  Finally made it into the hospital and they just wanted to check on his CMV.  This is normally an inactive virus, about 60% of people are born with, but due to the transplant, they need to check this to see if it becomes active so they can treat it.  Finally found the REI store to look for wide brimmed hat.  This was not happening.   Charlie did find a type of skiing hat that covers his ears, back of neck and more of his exposed skin.  He hates having no hair.  Needs to keep using sunscreen!!!  Very important to prevent GVHD on hands, face and neck.  GVHD and exposure to the sun can and will kill him.  They say it's like a third degree burn from the inside/out. 
Do not want this!!!  Need to find one that isn't so oily?  At least SPF 30.  Tried to find McDonalds downtown.  Forget it, found it, but couldn't find parking so came home and mom made him cheeseburger and fries.  His taste buds are still not what they used to be, so food taste kind of funny.  Still cannot use toothbrush, as mouth still has sores in it and it hurts too much.  Rinses with saline solution.  Even toast hurts to eat.

DAY 40 - Sun, Mar 2 (agran - will find out later)

Day off???  So far.  Woke Charlie up to take his meds around 8am.  He finally took them about 10:00, made him some breakfast and he went back to bed around noon.  We still have the day off, but we did get a call from the hospital.  They scheduled an appointment for Charlie on Weds, Mar 5th at 11am for a lumbar puncture ID methotrextate by the new fellow Dr. Yosho Inoue.  Basically, they're going to be pumping chemo into Charlie.  We also have to schedule an appointment with nuclear medicine for an RstTI/StrFOS TM GSPECT.  Have no idea what this is just yet.  Now that Charlie is out patient, I take it we will have a lot of appointments like we did prior to him receiving the transplant.  They do pre-transplant and post-transplant tests.  He was very quiet while he was up and didn't say much.  Didn't feel good today, he slept most of the day.  Stomach hurting.

DAY 41 - Mon, Mar 3 (no agran)

Rounds were at 8:30 am, we got to hospital right before 10am.  Missed rounds with Dr. Chauncey and new fellows.  Not only ones to miss rounds.  Charlie had blood drawn, dressing on pick line changed (only 2 nurses we know of are qualified to do this, Lisa & Charlie).  Made appointment with nuclear medicine for Mar 13 at 9:30 am.  This is for a 3 hour heart scan.  They will mail instructions to the apartment for the requirements prior to this test.  No caffeine/decaff 24 hrs prior, no food after midnight, takes meds.  He needs to start exercising to build back broken down major muscles from steroids.  We went and found him some comfortable pants (sweats/pajama bottoms) he can wear around the apartment and some walking shoes for exercise, as he didn't have any.  Hospital called in the evening to inform us to increase his tacrolimus (immuno-suppressants).  These levels are down due to the steroids "slowly" being decreased.  He is still taking 130 mg per day.

DAY 42 - Tue, Mar 4

Charlie woke up earlier for a brief moment and mom flushed his pick line and laid out meds.  Every day he wakes up is a good day.  No appointments or blood draws today.  Actually had the whole day off.  Charlie slept in.  It felt like a normal day and we just hung out at the apt. for the most part.  I went with some friends to help them pick out a computer.  He played on the computer, I cooked and cleaned.  It was nice.  Cough is going away finally.

DAY 43 - Wed, Mar 5

Charlie woke up by himself at 7am.  First time he did this and it was great.  We were the first ones in the hospital for the blood draws.  Dr. Chauncey actually smiled today and introduced us to the new fellow who will be working with Charlie, Dr. Yosh.  We found out, first in, first out.  He did have an appointment for a lumbar puncture ID methotrextate (where they pump chemo into him), but they rescheduled it for Friday.  Charlie actually got out and about by himself for a little today.  Gave mom a chance to clean, do dishes, laundry, take out trash & vacuum (he isn't allowed around during this, due to dust).  Getting ready to go to grocery store when hospital called and they need us in there tonight.  Ran to grocery store first, didn't eat dinner or take meds, got to hospital around 7:30 pm.  Charlie was not happy.  Apparently his sugar levels are high, so now he needs to poke his belly with insulin shots twice a day.  Doesn't like needles.  Also took him off the Acyclovir (prevents viral infection).  This oral dose of 800mg, twice a day, is not working well enough.  They did the CMV test on Saturday and must have seen some activity, so now Charlie has to receive gancyclovir twice a day through his PICC line pump.  We'll be able to do both of these at home, but they wanted to administer these themselves until they can teach us tomorrow morning.  The IV takes approximately an hour.  Got back to the apt about 9pm.  Long day.

DAY 44 - Thu, Mar 6

Up by himself again.  Running a little late, his stomach was upset, got to hospital around 10.  They did insulin shot, let him practice on himself, ran iv and showed us how to do everything ourselves.  They skipped us on rounds, will see us tomorrow.  We were going to have today off, but had to come in for the new medicine.  Got back to apt. around noon.  Have to be careful with his diet, due to drug induced diabetes, sugar levels are almost up to 500.  Should be 80 - 120.  This will go away once he is done with the steroids.  He was happy to hear this.  Dr. Chauncey is leaving for a little to go attend at the six other hospitals he works at and one of the new resident doctors will be taking over tomorrow, Dr. Wu.

DAY 45 - Fri, Mar 7

Woke up this morning and did blood draw, checked sugar levels, Charlie gave himself insulin shot, took meds, ate breakfast, got shower and then we went.  Sugar is still very high, but they reassured us this will change once he tapers off the steroids.  After rounds he was scheduled for a lumbar puncture ID methotrextate appointment.  He's already had two of these prior to his transplant, has to have a total of 6 post transplant, but these are very painful and scary.  If they hit the wrong spot he could possibly be paralyzed.  They basically drain some fluids (his were clear) from the base of the spine and then inject chemo into his nervous system (spine, brain).  This is a precaution to prevent the leukemia spreading to these areas, especially due to the location of his eye tumor.  Got back to the apt a little after 1:00.  We we are located is called either "Hospital Hill" or "Pill Hill."  Not a very good neighborhood in the immediate 2-3 blocks around us.  We are also surrounded by hospitals and constantly hear sirens or see the medical helicopter landing on the Harborview Hospital Helipad.  (Grey's Anatomy apparently used this hospital for the background of their series)  Craig from pharmacy called early evening and they are increasing his tacrolimus again to 2.5 mg twice a day.  Charlie went to take a nap.  These guys go through so much, it's unbelievable and absolutely amazing to see the transformation in them. 

DAY 46 - Sat, Mar 8

We had today off from the hospital.  Went through the daily routine and when I tried to hook up his ganciclovir IV, it kept beeping, telling us something was wrong.  I tried 3 times before I gave up, I was flustered.  Used the evening bag - no problem, and called the hospital to inform them I needed another one for the eveing.  I ran to hospital and picked this up and gave back used bags.  They treat these as "chemo" and dispose of them properly.  I do not like to administer this stuff at all.  It scares me as I was informed this can cause cancer.  Great!  Ambulance showed up at apt building around 8pm.  Apparently one of the VA patients took too many of his one medicine and had to be transported to local hospital and then to VA.  This was also scary.

DAY 47 - Sun, Mar 9

Had 10 am appt for the hospital to check Charlies sugar levels.  Still very high.  Originally started him out at 5 units of insulin, twice a day, raised to 7 units, then to 15 and now he is at 25 units twice a day.  Not a good sign.  He just started on the insulin about 4 days ago.  Hopefully this helps as he is "slowly" tapering off prednisone.  He is almost down to 100mg per day.  We will find out more tomorrow during rounds.  He stayed up all night and didn't lie down until 8:30 am.  Very difficult getting him up for early appt. and of course we were running a little late.  We were in and out of there within about an hour.  Brought home more insulin and ganciclovir (2 bags) for today.  They will check tacrolimus levels tomorrow. 

DAY 48 - Mon, Mar 10

Running late again!  Barely made rounds.  They increased his insulin intake even more.  Now he has to take 10 units of regular insulin, along with 35 units of NPH insulin, twice a day, if his counts are over 300.  Well, they haven't been under 300 since we started the insulin.  Charlie was very agitated all day today.  Not sure if it's due to the sugar levels or lack of sleep, but I am getting worried.  The pharmacist said to look for signs like these.  Will see how tomorrow goes and if it continues, I will have to call the hospital.  According to the diabetic chart, if his levels are over 250 for a few days, it could progress to a diabetic coma.  On the other hand, if he takes too much insulin (which he is receiving high doses) he could go into insulin shock.  Keeping a close eye on him.  He mentioned at one point his hands were trembling.  When we tested his blood before dinner, it was the highest it's been so far at 523 - this is not good.  Need to stabilize his sugar levels.  The evening test showed 392, after the insulin kicked in.

DAY 49 - Tue, Mar 11

Off today.  Blood sugar at 291 this morning.  Still high.  Charlie still very agitated.

DAY 50 - Wed, Mar 12 (We are halfway through the 100 days)

Hmmm, late for rounds again.  Missed them and we were the first ones there at 9:30.  Dr Wu moves through rounds fast.  We will have to be on time to make them.  Changed Charlies IV medicine due to CMV levels rising.  CMV when active could cause A LOT of problems that the doctor did not even get into and we did not ask.  This new medicine, Foscarnet, takes 3 hours to administer through his IV, again, he receives it twice a day.  Charlie stated the night dose made his whole body tingle.  Sugar levels still dropping.  248 this morning, first time under 250.  Looks like insulin and prednisone taper schedule are working.  Bedtime reading 217.  Stomach upset.