Thur 12/25/2008

MERRY CHRISTMAS TO ALL AND TO ALL A GOOD NIGHT!!!

Aaryah-Nicole received her Hanna Montanna keyboard from Uncle Charlie for Christmas.

There will be no further updates on this website.

GOD BLESS ! ! !

Tue 12/16/2008

We are trying to fly him home tomorrow and mom. I will update the funeral arrangements when I have more information. Thank you for all your prayers and support throughout this awful ordeal.

Sun 12/14/2008

Charlie passed away today.  My son, my son, my only one.  Your everyday struggle is over.

May God bless your soul and rest in peace Charlie.  We LOVE you!

Sat 12/13/2008

My sister, his Aunt Nan, flew in today.

Charlie opened his eyes a few times during the day, but that was all.  I put his Ipod on his ears for the past week so he could listen to the music he likes so he could be more comfortable.  Some of his friends came to the hospital to say goodbye.  There will be no service out here in Seattle.

Fri 12/12/2008

Uncle Bob and Aunt Linda got in today.

Charlies oxygen saturation dropped dramatically last night.  They could not get a definitive result on the biopsies and the medications are not working.  As of this morning they informed Brandy and I that they did all they could do.  They removed all of his medications except for his hydration, oxygen and pain medications.  They give him approximately 48 hours to live.  They don't think he will make it past the weekend.  They call this comfort care.  He looked very peaceful.

Father Gallagher came in at 11:45 am and gave Charlie his last rights. 

Charlie requested to go back to Pennsylvania if it came to this, so he will be coming home soon.

Thur 12/11/2008

His counts are all up today.  His agrans were 3500.  During rounds they discussed putting in a Foley (insert a tube so he can urinate into a bag).  He was not fully aware when this was brought up, so I would like to discuss this with him before the procedure.  If they do this and he realizes it is there without his full conscious consent, he may try to remove it.  They also want him to be bed ridden.  This means he would not be able to get up to have a bowel movement.  Things are slowly declining from day to day.  Apparently his lungs have gotten a little worse, yet his oxygen saturation has improved.  The CMV went down, but not away.  I believe they are done testing with the biopsies on his lungs.  They only had a limited amount of tissue and so many tests.  I requested a copy of the tests they did. 

Uncle Bob and Aunt Linda are flying in tomorrow for a few days.  Charlie is excited about this as am I.

Wed 12/10/2008

They tested his oxygen saturation on Monday, I believe, through a blood draw from an artery.  It was at 80% with him being on 100% high flow oxygen.  His PICC line in his right arm was not working and they had to remove this and put in a new line near his shoulder to administer his IV medications.  He had to go a day without his medications due to this, as they couldn't draw blood to do his counts.  They have started to give him breathing treatments through a bipap machine every six hours.  His mouth and coughs are filled with mucus so thick it looks like glue.  The lesions and spots in both the left and right lungs are still there, but stable.  This means no better or no worse.  They still do not have a definitive answer as to the lesions in his lungs and may never get one.  He is basically living off of medications and oxygen.  He hasn't eaten hardly any solid foods in over a week.  Due to the dilotta and oxygen deprivation, he is hallucinating and not in touch with reality most of the time, yet at the same time I believe he knows what is going on.  He is constantly asking me "how do I get out of here?"   He has fecal and urinary incontinence (the inability to control his bowels and the involuntary excretion of urine).  He still has open and raw sores and new blisters are appearing.  I am watching my son slowly die.  They don't know how long.  It could be days, weeks or months.

I want a miracle for Christmas!

Sun 12/7/2008

Saturday night was a new nightmare.  He was having difficulty breathing so I got his nurse and she tested his oxygen sats, which were decreasing rapidly.  They drew blood and his levels were down to 69%.  They drew them again a little later and they were down to 62%.  This was with 100% oxygen air flow.  Apparently from the x ray, the lesion on his left lower lobe is now also growing in his right lung.  They brought in the respiratory team and were going to hook him up to a respirator.  Just then he came to and had to use the bathroom.  This was a little process and as he was doing this, he changed his mind and told them he did NOT want to go on the respirator.  Dr. Smith told him if he didn't, his oxygen sats would continue to decrease, his heart would stop and he would die.  I agreed with Charlie about no respirator, as that was his wish and he realizes that once he goes on it, he will probably never come off of it.  They took it away.  He was touch and go all night. 

Called some family and friends early in the morning to let them know.  After rounds, where Charlie and I confirmed with Dr. Schubach, he did NOT want the respirator at all, they changed his medical wristband to DNR (do not resuscitate).  I stayed with him all night Saturday, all day Sunday and all evening Sunday night.  He was consistently in and out. 

Quite a few of his friends from Washington came to visit him during the day. He knew they were there, but was exhausted and sleeping on and off. 

Sat 12/6/2008

Charlie is no longer neutropenic.  His agrans are at 1700 and they have reduced his platelets again.  Since the bleeding has stopped in his lungs, they needed to lower these back to 50 to prevent too much clotting in there.  He is still coughing up mucus, has not really been eating or drinking since last Sunday, is being treated for a bacteria in his blood, still on the high flow oxygen at 75-80%, has very low energy levels, is in severe pain all over due to muscle pain from lack of movement or exercise,  most of the body sores are still red and raw - though some seem to be healing at a very slow rate and the anemia (fluid retention) is still there, but not near as bad as before.  Basically he is where he was before the lung scope and the needle scope, except maybe a little better due to the fluid loss.  We are still waiting on the biopsy results so we can know exactly what is going on with his lungs.  Probably not until at least Monday or Tuesday.  He has been sleeping most of the time for the last 3-4 days yet he actually asked Dr. Chauncey for a day pass today during rounds.  Of course we know the answer to that.  He has amazed us all with his will and determination.

Mom has set up camp in his room and has been spending around 20 hours a day in the hospital with him since his sister went home.  Family and friends are encouraged to come to Seattle to visit, we have a whole 2 bedroom apartment available that we are not using.  Soup for the soul.

Thur 12/4/2008

He did alright through the night.  Agrans are around 450 this morning.  Reduced oxygen flow to 85% but his lungs are still pretty full and he is exhausted and still coughing up mucus and small amounts of blood.  He received platelets and red blood cells again today.  His mouth and throat are red and raw and his lips have sores on them.  The nurses gave him a bed bath today.  It will take a few days for the cultures to grow from the biopsy yesterday, but they do know it isn't fungal. 

Wed 12/3/2008

His counts were up to 350.  They scheduled the needle lung biopsy today and got him ready around 3pm.  It took a long time.  They got three biopsies from his lungs and sent him next door to x ray to see if there was air in his lungs (pneumothorax) which could result in his lungs collapsing.  In x ray he started coughing up huge amounts of blood and was rushed back upstairs to the bone marrow unit.  They ordered platelets stat and red blood.  His oxygen sats were down and everything else was elevated, blood pressure, pulse, etc.  They increased his oxygen air flow to 100% and hooked up the machine to monitor his vitals and heart for the evening, as he was considered and has been, ICU.  Dr. Chauncey came in and spoke to both of us and said if his oxygen saturation went below 90% (not the machine, but his actual oxygen levels in his blood) they were going to put him on a respirator.  He agreed to this.  After the platelets were infused and a few hours later, when he was calmed down, the coughing up blood slowed and his oxygen sats were running about 95% while awake and 88% while asleep.  He is still coughing up some blood (minimal) and mucus and using the suction tube to remove it.  They increased his lasix (to remove fluids) and Dr. Stonestreet from pulmonary said it may take up to two days to correct itself.

They still do not know "WHY" his lungs keep filling up and we are still waiting for all the results from the biopsies.  This is a nightmare.

Tue 12/2/2008

Not much has changed.  His counts are at 270.  They restarted the Foscarnet (treatment for CMV) even though his counts are still very low.  They are definitely leaning towards the CMV.  His platelets keep dropping and they keep infusing them to keep his platelet count up.  This morning at 7:33 am they were at 56 (they like to keep them above 50) and by 9 - 9:30 blood was practically pouring out of his mouth and nose, that's how fast they dropped, so they ordered more platelets STAT.  Charlie agreed to the needle lung biopsy so they are going to schedule this hopefully this week.  It has a technical/medical name, but I can't remember.  In researching this biopsy it shows they usually look for two things.... 1) cancer 2) benign tumors.  When we asked Dr. Smith about this, she said no, they are looking for infection.  I know they are looking for the CMV which would be fatal.  How long, we don't know.  Pretty much it is all bad right now.  We also asked about them doing this procedure while he is neutropenic and they told us it is relatively safe.  As with any procedure, there are always risks involved and they still may not find out what is going on.  He is still on oxygen, now at 75% and his lungs are not clearing.  He is using a suction tube to get the mucus and blood out of his mouth as he almost suffocates on it at times.  It's so hard to remain positive at this point.  He knows his chances are slim right now - he is the one living with it, if that's what you want to call it, living.

Mon 12/1/2008

Went in for rounds.  His counts are still dropping.  Agrans are now 250, white blood count 0.3, platelets 34.  Pretty much everything is low, so they are discontinuing the Foscarnet.  This is used to treat the CMV but it seems to lower all his counts.  He got the immuno globin today, this is now once a week and is also for the CMV.  He is getting the "G" which is the immune booster and should help bring up the white counts.  He slept all day yesterday and most of today.  He feels like crap.  Apparently the lung scope did not find anything definitive.  Originally it showed bacteria in his blood, but now that is testing negative.  It also showed no hemorrhage.  Other than that, I don't believe they know what is going on with his lungs, so they want to try another test.  This is not supposed to be as risky and it is done by radiology.  They target an area on the lungs, numb the outside of his skin and go in with a needle to get pieces of his lungs to biopsy.  He is still thinking about the procedure at this time.  His weight has dropped to 190 lbs and he has not eaten anything in two days.

Sun 11/30/2008

Charlie is neutropenic - his agrans are 450 today.  White blood count is 0.5.  They continually are giving him platelets.  He didn't mention the stomach hurting and it looks like his liver counts are within range today.  He actually went in to the family room last night for a few hours while I was sleeping, so he could update his fantasy football.  They reduced his oxygen intake to 65% and he is resting right now.  The biopsy results are still not back.  He has a blister on the back of his right foot that is as big as a baseball.  He cut the skin off of it last night.  Probably not a good idea.  I believe he realized this a little too late.

I have a very sore throat - it is raw and I cannot be with Charlie since he is neutropenic.  Maybe he will get some sleep while I am not there.

We met two brothers Rod and Les last winter.  They went back home in March.  Rod called tonight.  They buried Les yesterday.

Myrna told me her and her husband Dale received their bad news yesterday.  Once Dale is able to be discharged from the hospital, they will be leaving the bone marrow unit and going home.

Sat 11/29/2008

Charlies agrans are dropping - in the 800-900's.  500 is neutropenic.  His white blood cells are down to 0.9.  He has a bacteria in his blood which they started to treat today.  His kidney counts are elevated so they lowered his lasix.  His liver counts are up pretty high and his stomach was hurting bad last night, which is a good indication the GVHD is back.  Still do not have the results back on the lungs.  The damage that was already done may not be reversible.  He is still on high oxygen levels and when he removes the mask for too long his lips turn purple.  He has been up since 4am and is desperately fighting off sleep, so he keeps nodding in his chair.  He is not eating or sleeping properly.  He refused to eat any lunch and had a bare minimum for breakfast. He is in a lot of pain.

Fri 11/28/2008

Charlie agreed to do the lung scope today.  We were both up late last night.  It was scheduled at 11am.  They actually did it in his room.  They had to numb his mouth and back of his throat, sedate him and go through his mouth with the scope, instead of his nostrils, all the while him wearing an oxygen mask.  After the sedation, they inserted a tube with a camera at the end and entered every possible area of both lungs and his esophagus.  While doing this they inserted fluids into these areas, which mixed with the fluid and blood already in his lungs, so they could suctions it out to biopsy these.  At one point the suction didn't seem to be working on the doctors scope.  Eventually she was able to make it work and suction out biopsy samples, but it was very scary.  They had to continually monitor his heart rate and blood saturation during the whole process. 

When the machine flat lined my heart stopped.  Here, the clip on his finger that was measuring these vitals had fallen off at some point during the process.  His nurse Donna replaced it immediately.  Charlie woke up a few times coughing from the fluids and was sedated again.  The sedation process was done a little at a time, because this would also contribute to his oxygen saturation going down and him possibly crashing.

This whole process seemed like a lifetime.  I can't say exactly when it began or ended, but he made it through without having to go on a respirator.  Now we just have to wait a few days to see what the results are.  They do know it is not a lung hemorrhage, which could have been the simplest problem to solve.  Now we just wait and pray the problem is treatable.

Charlie is very sleep deprived, in pain and scared.  Food is about the only thing he looks forward to and he wasn't able to eat or drink since midnight last night.  He is craving lots and lots of sugars, unfortunately his glucose was in the high 400's today, which is not good.  I believe having the drug induced diabetes for so long may be related to his mood swings and eye sight.  This can result in glaucoma, also known as "the sneaky thief of sight" because it occurs gradually over a long period of time.  Glaucoma is also linked with hyper tension (high blood pressure) which Charlie also has and is being treated for.

Thur 11/27/2008

Dr. Chauncey wants to do the lung scope tomorrow morning at 11am.  The medications are not working.  His skin is starting to blister in different areas, his eyesight is going and his lungs are now half full, according to the results of the CT chest scan they did yesterday.  They are still not sure exactly what the cause is.  They are hoping the lung scope will pinpoint the problem.  Without it (the lung scope) his oxygen levels will continue to decrease and it will be too late to do anything.  With it, they may be able to find the cause and possibly treat it.  At this point, Charlie and his nurse Donna were writing the pros and cons.  Dr. Chauncey will be back in an hour to see what Charlies decision is.  Originally it was no.

Tue 11/25/2008

Everything is subject to change at this point.  He is still coughing up blood, so they want to do a CT scan on his chest to see how the medications have worked.  They had taken him off the "G" (Filgratsim) but put him back on it yesterday because his white blood cell count was back down.  This is a growth booster for the white cells.  He is still receiving an immuno globin IV every other day to treat the CMV.  The GVHD still seems to be stable.  His skin seems to be breaking down in various places and he has some open blisters.  They are continually applying a barrier cream to these spots.  He is still receiving platelets on a continuous basis.  His magnesium levels were at a critical low this morning.  I believe he is still receiving an IV for this on Mon, Wed and Fri.  He is so sick of being sick.

Sat 11/22/2008

Dr. Chauncey is now the attending.  During rounds this morning he told Charlie he is on the upswing.  They are trying to wean him off the oxygen (which is now the full flow - the most powerful one) and it was running at 100%.  They've reduced it so far today to 80% and will keep trying to lower it to 40%, so he can use the portable oxygen tanks and be more mobile.  Apparently his lungs are starting to clear up from all the fluids in them.  His skin, in certain areas, has a severe rash and is starting to break down due to being in bed so much. They will probably give him a different bed to help with the skin break down.  An air mattress type.  He knows what he wants and what he doesn't want and he gets very upset and frustrated when he feels no one listens to him.  He still feels he doesn't have much control, if any, over the decisions concerning him.  He does not want the new bed.  Dr. Chauncey believes the new bed and possibly a new chair with back support will help with the skin break down and the pain in his back.  He actually sleeps sitting up a lot of the time or is in the sitting position.  I wish he would be more flexible and open minded and at least consider these decisions before reacting, because I would say 98% of the time, it is in his best interest - but it is his life.

Today the Soldiers Angels mailed Charlie a lap top computer that he can have in the hospital with him to help pass the time.  My friend Rosalba, another mother and caregiver who left this month with her son Alex, referred them to me.  I had sent Rich, their friend at the Soldiers Angels, an email explaining Charlies situation and that his laptop had broken a few months back.  Charlie and I are still amazed and forever grateful for everyone who has helped during this difficult time.  It seems we will be in Seattle for quite some time.  I'm afraid to ask.  Also, what will Charlies quality of life be?  Hopefully not like these last three months.  I am now aware that the CMV and GVHD will be a constant battle throughout his life.

Fri 11/21/2008

He has been touch and go since last Tuesday when he came in with the CMV.  The lasix (to get the fluids off) has been increased.  He keeps gaining weight and is back to 212 lbs.  Coughing up blood sporadically -  just a little last night.   They've increased his platelets and oxygen.  He fell last night and hit his head on the trash can, coming out of the shower.  They did a CT scan and everything looked alright.  Bruising, but no breaks or internal bleeding.  They switched his room from #7 to #5 (closer to the nurses station in case of another fall).  His back is still bothering him, but they did a few x-rays.  No compression fractures, probably pulled or tore a muscle.  His pain medication has been increased and he is in and out of the moment.  He is back on the PCA (dalotta) pump.  Still has fluids on both lungs, but Dr. Schubach believes this is due to all the medications and the heavy fluid retention.

Good news today during rounds.  His agrans are up (these fight off infections), his white blood cell counts are up and they plan to take him off the CMV medication (IG) because his levels have dropped dramatically and this will also allow them to take him off the hydration fluids that he needed to go with it.  GVHD seems to be stable and they are still continuing the prednisone taper.  We even took a walk to the day room last night for a few minutes so he could get a little exercise. 

Finished moving all our belongings from the old apartment and Maureen (a caregiver) helped me clean it yesterday.  Spending most of my time with Charlie at the hospital.  He is still not out of the woods yet, but I believe even the doctors are pleased with these positive changes.

Tue 11/18/2008

His sister went home tonight.  Spent most of her time at the hospital with Charlie.

Mon 11/15/2008

Moving apartments from #204 to #604.  Have to be done by Friday, new people coming and they need a wheelchair accessible apartment.  Address is still the same.

Sun 11/16/2008

Brandy spent last night at the hospital with Charlie.  Some more of his friends came to visit him too.  I went in last night and there was no room for Mom.  That's fine with me, I can use these breaks right now.

This morning at rounds Dr. Schubach informed us his CMV went from 23 - 9, which is great.  We want it to go away completely.  The GVHD is stable and his counts were decent.  He's been having back pains and today there was blood in his stool.  He keeps asking for a day pass and the fellow doctor told him they didn't think he was going to make it through last week, they thought they were going to lose him and he is still not out of the woods yet.  He is on 19-20 different IV medications every single day, still on the oxygen, still coughing up some blood, but hanging in there and remaining positive for the most part. 

Sat 11/15/2008

Charlies sister got in last night, I am so happy she came out.  Went to sleep and both of us got up early this morning to makes rounds.  At the hospital at 8am and sat with Charlie for awhile before Dr. Schubach came in with the staff for rounds.  The black stool they believe, is from the blood he is coughing up and swallowing.  The chest xray shows signs of intermittent improvement.  His red blood cells are not reproducing as they should so they may do a bone marrow biopsy down the road.  He is still receiving units of blood and got 2 units of platelets last night.  Still wearing the oxygen mask.  He tires easily and gets cold when it is off too long, such as eating, bathroom or just plain bothering him.  Today he said the air from it was drying out his eyes.  He wanted a nap, so Brandy and I came back to the apt.  I am going to take a nap myself and she went back in to the hospital to be with him. 

Rounds seemed to be positive and hopeful.

Fri 11/14/2008

Went in for rounds today.  Had to get a ride from Rosabla and Alex.  Charlies car wouldn't go into any gears, so it sat.  Charlie was really tired this morning.  Dr. Schubach said there were no changes from yesterday.  Lungs or oxygen saturation levels.  Without the oxygen mask, his levels are around the high 70's and they need to be at least 90 or above.  With the oxygen they are around 94 - 95.  He had a chest xray this morning.  Still don't know the results of that yet.  He wasn't coughing up as much blood, but his stool was almost black.  His nurse said it was probably due to blood being in it.  From where it came, I don't know.  Making a list of questions for tomorrow morning.

Came back to the apt so he could get some sleep and see if I could find someone to fix the car.  Called the shop and they told me how to get it into neutral, start it and put it into drive.  Called Charlie and let him know about this.  Naturally he was very upset.  The shop wants $90 just to diagnose it and I wouldn't be able to get an appointment until next Wednesday.  Didn't make the appointment.  Went back into the hospital around 2:30 - 3:00 and took him a few gatorades, some bananas and a tostado from Rosabla.  Hung around until about 7pm, after he ate dinner and he was tired again.  Got him a warm blanket and came back to the apt for the evening.  Rosabla and Alex offered to give me a ride to the airport to pick his sister up around 9:45pm.  Will go back in to hospital tomorrow around 8am.

Thur 11/13/2008

Spent last night at the hospital with Charlie.  Neither one of us slept very much.  He was still coughing up blood and on 80% oxygen.  His blood is still not saturating enough oxygen by itself.  He can't leave his room as the oxygen is hooked into the wall by his bed.  Rounds were about 10am with Dr. Schubach and the staff.  They discussed the 11am lung scope.  Since his lungs already have spots all over both of them, this would only make them worse, but it would pinpoint "why" there is blood in his lungs and they could treat the problem more accurately.  In doing this, his oxygen saturation would go down ever further and they would need to put him on a respirator.  This is a very painful procedure and he would need to be heavily sedated.  He would not be able to eat, drink or even talk.  At this point, we would hope the medications work, otherwise, he would be on the respirator for good.  Very serious and sad rounds.  Notified the family and his friends in Seattle, now would be a good time to see Charlie.

Around 10:30 am, Dr. Schubach came back in with two doctors from pulmonary and Dawn the psychologist.  In discussing Charlies situation further, we were informed that the BMTU is already treating Charlie for numerous infections, viruses and diseases.

He is on medications right now for GVHD, CMV, bacterial infection, fungal infection and possibly blood that leaked into the lungs due to the chemo and radiation, prior to the transplant.  He has tested positive for the GVHD and CMV, which is a very delicate balance of his medications.

His liver and kidneys are doing good, although his blood pressure is up, his sugars are up and he is still retaining a lot of fluids from the last GVHD treatment, ATG and prednisone.  It's the blood in his lungs and the low oxygen saturation that are the main concern.  In discussing all this with Dr. Schubach and pulmonary, the question was presented.  Why bother doing the lung scope and damaging his lungs more so than they already are, if he is being treated for every possible cause at this point?  The answer:  pinpointing exactly what the cause is and doing just that particular treatment, instead of all these medications which may have serious side effects and may not be necessary.  Also, determining the best treatment available.  Charlie decided not to do the lung scope and every one seemed to be in agreement at this time.  If the lungs do clear up, they can do the scope at a later time and he wouldn't need to be put on the respirator today.  On the other hand, he is at risk of not receiving the best treatment available for whatever the cause is.

We then met with the infectious disease people, and they believe, without doing the lung scope, that it is possibly one of two things.  CMV or Aspergillosis.  CMV of course is the virus and the Aspergillosis is a disease caused by fungi of the genus Aspergillus.  Most humans inhale Aspergillus spores every day:  aspergillosis develops mainly in immunocompromised individuals.

At this point there was no lung scope and we still do not know the cause of the low oxygen saturation or the blood in the lungs.  We can only take it day to day at this point.

His sister will be flying in to Seattle tomorrow evening.  Five of his friends from the Seattle/Tacoma area came to visit him this afternoon.  He had a fairly good day and seemed to be optimistic.

Wed 11/12/2008

Went in around 8am.  Charlie started coughing up blood last night.  It seems to be coming from his lungs.  They ordered a chest scan for today and may do a scope into his lungs to get a biopsy.  He is still on the oxygen.  He wasn't allowed to eat or drink in case they could get the scope in today.  Went down to xray for the scan around noon.  They are giving him another unit of platelets and two more units of blood today. 

Dr. Schubach came in around 2pm to talk to us.  He looked at the chest scan and there are a lot of spots on both lungs.  It is not just one, which would more than likely be pneumonia.  They are all over.  It could be blood, fluid or puss.  Three days ago his chest scan was clear, that's how fast this thing moved.  They are going to keep him on the oxygen and since the first Foscarnet treatment, he hasn't been coughing up as much blood and the oxygen saturation seems to be going up a little.  Every few hours are very important and they keep checking his vitals on a regular basis.  They scheduled the biopsy for tomorrow at 11am.  Dr. Schubach also discussed that the biopsy may not even be able to tell them what it is.  It could be the CMV, GVHD or anything at this point.  There is a 1/3rd chance they will find out.  If it does not clear up, Dr. Schubach discussed putting Charlie on a respirator.  This is very painful and he would have to be heavily sedated to do this.

The nurses printed out information for Charlie on the CMV so he could read up on it.  We are both very, very scared.

Cytomegalovirus (CMV)

CMV infection of a lung pneumocyte.
Virus classification
Group: Group I (dsDNA)
Family: Herpesviridae
Genus: Cytomegalovirus

Cytomegalovirus (from the Greek cyto-, "cell", and -megalo-, "large") is a viral genus of the Herpesviruses group: in humans it is commonly known as HCMV or Human Herpesvirus 5' (HHV-5).[1] CMV belongs to the Betaherpesvirinae subfamily of Herpesviridae, which also includes Roseolovirus. Other herpesviruses fall into the subfamilies of Alphaherpesvirinae (including HSV 1 and 2 and varicella) or Gammaherpesvirinae (including Epstein-Barr virus).[1] All herpesviruses share a characteristic ability to remain latent within the body over long periods.

HCMV infections are frequently associated with salivary glands, though they may be found throughout the body. HCMV infection can also be life threatening for patients who are immunocompromised (e.g. patients with HIV, organ transplant recipients, or etc...

Immunocompromised patients

Primary CMV infection in patients with weakened immune systems can lead to serious disease. However, more common problem is reactivation of the latent virus.

In patients with a depressed immune system, CMV-related disease may be much more aggressive. CMV hepatitis may cause fulminant liver failure. Specific disease entities recognised in those people are cytomegalovirus retinitis (inflammation of the retina, characterised by a "pizza pie appearance" on ophthalmoscopy) and cytomegalovirus colitis (inflammation of the large bowel).

Infection with CMV is a major cause of disease and death in immunocompromised patients, including organ transplant recipients, patients undergoing hemodialysis, patients with cancer, patients receiving immunosuppressive drugs, and HIV-infected patients. Exposing immunosuppressed patients to outside sources of CMV should be minimized to avoid the risk of serious infection. Whenever possible, patients without CMV infection should be given organs and/or blood products that are free of the virus.

Patients without CMV infection who are given organ transplants from CMV-infected donors should be given prophylactic treatment with valganciclovir (ideally) or ganciclovir and require regular serological monitoring to detect a rising CMV titre, which should be treated early to prevent a potentially life-threatening infection becoming established.

Diagnosis

Most infections with CMV are not diagnosed because the virus usually produces few, if any, symptoms and tends to reactivate intermittently without symptoms. However, persons who have been infected with CMV develop antibodies to the virus, and these antibodies persist in the body for the lifetime of that individual. A number of laboratory tests that detect these antibodies to CMV have been developed to determine if infection has occurred and are widely available from commercial laboratories. In addition, the virus can be cultured from specimens obtained from urine, throat swabs, bronchial lavages and tissue samples to detect active infection. Both qualitative and quantitative polymerase chain reaction (PCR) testing for CMV are available as well, allowing physicians to monitor the viral load of CMV-infected patients.

CMV pp65 antigenemia test is a immunofluorescence based assay which utilizes an indirect immunofluorescence technique for identifying the pp65 protein of cytomegalovirus in peripheral blood leukocytes. The CMV pp65 assay is widely used for monitoring CMV infections and its response to antiviral treatment in patients who are under immunosuppressive therapy and have had renal transplantation surgery as the Antigenemia results are obtained ~ 5 days before the onset of symptomatic CMV disease. The advantage of this assay is the rapidity in providing results in a few hours and that the pp65 antigen determination represents a useful parameter for the physician to initiate antiviral therapy. The major disadvantage of the pp65 assay is that only limited number of samples can be processed per test batch.

CMV should be suspected if a patient has symptoms of infectious mononucleosis but has negative test results for mononucleosis and Epstein-Barr virus, or if they show signs of hepatitis, but has negative test results for hepatitis A, B, and C.

For best diagnostic results, laboratory tests for CMV antibody should be performed by using paired serum samples. One blood sample should be taken upon suspicion of CMV, and another one taken within 2 weeks. A virus culture can be performed at any time the patient is symptomatic. Laboratory testing for antibody to CMV can be performed to determine if a woman has already had CMV infection. However, routine testing of all pregnant women is costly and the need for testing should therefore be evaluated on a case-by-case basis.

Serologic testing

The enzyme-linked immunosorbent assay (or ELISA) is the most commonly available serologic test for measuring antibody to CMV. The result can be used to determine if acute infection, prior infection, or passively acquired maternal antibody in an infant is present. Other tests include various fluorescence assays, indirect hemagglutination, (PCR) and latex agglutination.

An ELISA technique for CMV-specific IgM is available, but may give false-positive results unless steps are taken to remove rheumatoid factor or most of the IgG antibody before the serum sample is tested. Because CMV-specific IgM may be produced in low levels in reactivated CMV infection, its presence is not always indicative of primary infection. Only virus recovered from a target organ, such as the lung, provides unequivocal evidence that the current illness is caused by acquired CMV infection. If serologic tests detect a positive or high titer of IgG, this result should not automatically be interpreted to mean that active CMV infection is present. However, if antibody tests of paired serum samples show a fourfold rise in IgG antibody and a significant level of IgM antibody, meaning equal to at least 30% of the IgG value, or virus is cultured from a urine or throat specimen, the findings indicate that an active CMV infection is present.

Relevance to blood donors

Although the risks discussed above are generally low, CMV assays are part of the standard screening for non-directed blood donation (donations not specified for a particular patient) in the U.S. CMV-negative donations are then earmarked for transfusion to infants or immunocompromised patients. Some blood donation centers maintain lists of donors whose blood is CMV negative due to special demands.[16]

Treatment

Cytomegalovirus Immune Globulin Intravenous (Human) (CMV-IGIV), is an immunoglobulin G (IgG) containing a standardized amount of antibody to Cytomegalovirus (CMV). It may be used for the prophylaxis of cytomegalovirus disease associated with transplantation of kidney, lung, liver, pancreas, and heart.

Alone or in combination with an antiviral agent, it has been shown to:

• Reduce the risk of CMV-related disease and death in some of the highest-risk transplant patients • Provide a measurable long-term survival benefit • Produce minimal treatment-related side effects and adverse events. [17]


Ganciclovir treatment is used for patients with depressed immunity who have either sight-related or life-threatening illnesses. Valganciclovir (marketed as Valcyte) is an antiviral drug that is also effective and is given orally. The therapeutic effectiveness is frequently compromised by the emergence of drug-resistant virus isolates. A variety of amino acid changes in the UL97 protein kinase and the viral DNA polymerase have been reported to cause drug resistance. Foscarnet or cidofovir can be given in patients with CMV resistant to ganciclovir, because foscarnet has bad nephrotoxicity, increased or decreased Ca2+ or P, and decreased Mg2+. Vaccines are still in the research and development stage.

From a mothers point of view:  Cecilia M. Mitch

The donor was positive for CMV.  At that point, we did not know what it was.  The donor, who I one day hope to meet, was 1 in 6 million, a non-related donor,  who met the tests for Charlie to receive the bone marrow transplant.  At that point, he only had 3-4 months to live without a donor.  Of course we choose to do the transplant, under such a stressful, life threatening situation.  There was always hope and medications that could possibly treat this.  The doctors knew from the beginning what they were dealing with.  Sad, but true, we did not.  We didn't even know what Leukemia was.  It was a gamble from the beginning.  When Charlie said he felt like an experiment, I suppose in a way he was.  We cannot hold anyone responsible for trying to save his life, we can only thank them.  There is nothing more sacred than life.

Miracles happen everyday.  We are still hoping for that miracle. 

Tues 11/11/2008

Took Charlie back in at 8am for meds and rounds.  Waiting for him to call for overnight pass.  He called around 1:30 - 2:00 pm.  No pass.  Not good news.  He received another unit of platelets (just got one yesterday) and 2 units of blood.

The CMV is back at 23.  The GVHD is stable, but still there.  His white blood counts, red blood counts, hematocrits and platelets are all down.  He had to be put on oxygen, because there is not enough oxygen saturation in his blood.  They changed his medications and put him back on Foscarnet for the CMV.  His blood sugars are up, his blood pressures is up, his fluid retention is not going away and it is not good.  He seemed to be having labored breathing yesterday.  They increased his lasix (fluid retention medication) and his legs are not just leaking, they are streaming fluids when he bends his knees.  I couldn't watch.  They also increased his blood pressure medications and added the Almopidine. 

If they try to treat the CMV, it will affect the GVHD.  If they try to treat the GVHD, it will affect the CMV.  We are between a rock and a hard place.  How much more can his body take? 

Went back in to the hospital around 3pm and he wanted coffee and ice cream sandwiches.  How can I say no?  He got (decaf) coffee and I went to the store and got him ice cream sandwiches.  Called at 7:50 pm to remind him that House was on TV.  Will go back in the morning for 8:30 rounds and hope there is good news.  Just when things started to turn around for the good.

Tues 11/11/2008

HAPPY VETERANS DAY!!!

Thank You to all the men and women who served, and those who are still serving, in the Armed Forces.

Mon 11/10/2008

Charlie had an overnight pass today.  It was good and uneventful.

Sun 11/9/2008

Charlie had another overnight pass Saturday night, which was going well for awhile.  He went with some friends to the store and McDonalds and got home around 10:20pm.  I was really upset as his 2nd IV medication was due at 9pm and he and I got into a huge, loud, verbal argument.  He threw his IV pump on the floor and broke it and fell on his butt.  Thank God the IV pump was not attached to him at that time and he wasn't hurt.  He couldn't get up by himself, so I had to help him.  I called the hospital and spoke to one of the night nurses.  I was going to take him back in for the evening so they could administer the last IV, when I tried the pump on the charger.  We were able to give him his Vancocyimin (for the bacteria/staph infection).  He feels he has no control, but I told him he is the only one in control of his recovery.  We are just here to help.

Charlie and I have been disagreeing about the importance of the times for his medications and had a long talk and decided to discuss this with Dr. Schubach in the morning at rounds.  It was close to 12:30 - 1:00 am when I went to bed, Charlie was still awake watching TV.  I woke up around 4am and he was sleeping in the chair in the living room, so I woke him up to go to bed. 

We were at the hospital at 8am and made rounds at 8:30.  Took in the broken pump.  Dr. Schubach confirmed how important it is to take his medications when they are supposed to be taken.  Charlie knows this, but is not absorbing it.  They are also going to check into tapering his methadone (pain medication).   He is on very, very high doses and we believe this is really interfering with his memory, moods and thought process.

I left Charlie at the hospital so he could get his morning medications and I went  back to the apt for a nap.  Charlie called around 1:00 pm and said he was not getting an overnight pass today, he was having chest pains and they did an x-ray.  It looked alright, but they figured better safe than sorry.  May be muscle soreness due to using the walker, not sure at this time.  I stayed at the apartment and took a mental health day and took care of me.  I finally shaved my legs, clipped my toenails, bought a $4 dye and colored my graying hair, walked 20 mins, watched football, cooked, cleaned, went grocery shopping and returned some bad meat from the store.  Finally finishing the details on the September wedding for SunShine Studio and now I'm watching Desperate Housewives, drinking some hot tea and going to bed early.

Sat 11/8/2008

Charlie had his overnight pass last night and it went well.  I ran his nighttime IV meds and they weren't done until midnight.  We found out we can start these at 8pm and push the one a little faster, so we could be done by 9 - 9:30 pm.  He had to be back in by 8am this morning for his AM medications, IVs and rounds, which he was, but neither one of us got much sleep. 

Yesterday we stopped so he could get a haircut.  It looks good.  His ankles and feet were wrapped really tight and were hurting pretty bad, so once we got to the apt, he unwrapped those and took pictures and then we watched the movie Hancock.  (funny) 

During rounds this morning, Dr. Schubach, who is now the attending, informed us that the last test for CMV came back negative, which is good.  They originally stopped the taper on the prednisone, but will resume it again.  Apparently he is stable with the GVHD at this point, even though it is not completely gone.  I was told he has steroid refractory GVHD.  This means the GVHD is not fully responding to the steroids.  It hasn't responded completely to the 3 treatments they've tried - tacrolimus, ATG and prednisone.   The best case scenario would be for it to go away completely and NEVER return.  Or the CMV.  Or the Leukemia.  Then we would be able to go back home to PA and follow up in Washington, DC.

Friday 11/7/2008

Aunt Barb left yesterday.  We already miss her.  As Charlie said, she is a well of optimism and did us both a world of good.  Charlie has had day passes all week and may be able to get an overnight pass this weekend.  During rounds yesterday, Dr. Wu informed us that clinically, Charlie still has the GVHD and there are signs of the CMV coming back.  They are planning to taper the prednisone and see where we go from there.  They also detected a bacteria/staph infection which they are treating with anti-biotics. 

It is raining today and the weathermen are calling for floods all over Washington.  Barb and I found out that Seattle is called the Emerald City. 

Monday 11/3/2008

Went in for rounds this morning around 8:30 am.  They are changing one med back to Acyclovir.  The gangcyclovir was messing with something - I don't recall at this time.  Charlie has been off the dalotta for a few days and on the methadone.  Apparently the ATG was the last treatment they had available for his GVHD.  We thought there were 2 more, but apparently not.  At this point, we can only hope it continues to get better and go away.  Right now Charlie has severe acute GVHD and is, out of all the patients on the unit, in the worst condition.  His legs are leaking so much they are creating puddles at his feet.  His sweat pants are soaked within hours and these are the least of his symptons.  His spirits are still good and we haven't given up hope.  His counts are still going up and his weight slowly down.

To all the army moms that have been sending cards and have Charlie and I in their prayers, we are very, very touched and inspired.  Grace and Dan, thank you for all your help.  To the VFW and legions back home, my sisters Debi and Felicia, family and friends, the support and concern are greatly appreciated.  Thank you everyone!

We went back and took him out for a day pass for a few hours.  Came back to the apt and made dinner.  Charlie took a nap, we watched some TV and back to the hospital

Sun 11/2/2008

Charlie got a day pass for a few hours today.  We all went back to the apt and just hung out.

Sat 11/1/2008

Bob and Sherrie left today to go back home.  They were here almost a week for the yearly checkup.  Everything seems to be going well for Bob.

Charlie didn't feel up to a pass today.  Barb and I hung out at the hospital for a few hours.

Fri 10/31/2008

HAPPY HALLOWEEN!!!  My sister Barb flew in today.  Her flights were all messed up and she got in to Seattle 3 hrs later than planned.

Thur 10/30/2008

No day passes for the past two days.  His sugars are way up or way down.  They took him off the lasix, then they put him back on.  His kidney levels were up, then they were down.  Constant change on the medical side, yet his counts are still going up.

Bob and Sherrie are back for their yearly checkup.  Bob went in and spoke to Charlie today.  He is the first person Charlie has been able to relate to, who can actually understand how Charlie has been feeling emotionally and physically throughout this whole process.  That was very kind of Bob.

Tue 10/28/2008

Charlie got a day pass today.  We went back to the apt from 2pm - 8pm.  We found out he needs to get showers at the hospital.  Stepping in and out of the bathtub is too difficult.  He didn't take any pain medications while we were out and he wasn't feel too good when we went back to the hospital.  Had to use wheelchair.

Mon 10/27/2008

Happy Birthday Mom!

Sat 10/25/2008

Charlie called me yesterday.  He seems to be doing better with medications doctors gave him.  Me, I'm sick and taking weekend off to get myself better.  He's in good hands and I am finally able to sleep with help of tylenol pm, so taking advantage of it.  Getting a new doctor out here is next to impossible and requires too much energy.

Thur 10/23/2008

Charlies counts are still going down, his legs are literally leaking fluids, the one level is up indicating the fluids are going back into his veins where they belong, his weight is up and down (198 lbs - the latest), CMV results were negative, the biopsy results confirmed GVHD, the symptons aren't as severe, they say it is actue, not chronic GVHD, so the doctors are going to continue with the IV prednisone.

Well, he had a day pass for a few hours out of the hospital, so we came back to the apt.  Ate pizza for lunch and he took a nap.  Charlie woke up with severe joint pains in his hips, knees, ankles and feet, couldn't walk, running a fever, had rigors and really scared.  Had to call 911 to transport him back to hospital.  The doctor and nurses were waiting with IV's, antibiotics and pain meds.  Believe he has an infection.  Started treatment right away.  Fever was 100.9 when I left at 8:30 pm.  Just another day in paradise.

Don't feel so well myself, so making doctors appt tomorrow and won't be in for rounds.  Will call in to check on him.  He thinks he gave me something and I think I gave him something.  Both a mess.

Monday 10/20/2008

I found out my dog Shelby died last night.  She was with my family since she was a puppy, her birthday was in October and she was a Christmas present for Charlie and Brandy when I bought our home 14 years ago, the day before Christmas, in 1994.  She died at home overnight, last night, and is laid at rest by the rose garden, at the only home she has ever known.  She is no longer suffering and I miss you Shelby.

May you R.I.P. Shelbers!!!

Went in for rounds and Dr. Schubach said things were looking up.  Counts were up, things were looking good and it was short and sweet.  Until I asked for the printouts of Charlies counts and started marking them on his calendar.  Everything is way down.......  His WBC is 1.1 , HCT 22.4, Platelets 39 (up only because he received some yesterday through IV)  and his AGRANS.....960.  He received two units of red blood cells today and one unit of platelets yesterday.

500 is neutropenic.  They were just up to 3400 over the weekend.  So I inquired, after rounds, without Charlie present (as he was sleeping all morning because he knew I was upset about something) with the 2nd in charge nurse - Lisa.  She believes his counts are down due to an infection or the GVHD.  Charlie was scheduled for his biopsy at 1:00 today.  I was at the hospital from 9am - almost 3pm before they put him on the stretcher for the transport to the 3rd floor for the Biopsy.  I got back to the hospital around 5:00 pm and nobody knew where he was.  I had them call the GI department and was informed he didn't get into the biopsy until after 3:40 pm.  I didn't care WHEN he got there, I just wanted to know WHERE he was.  I waited in the hallway for them to bring him back to the 4th floor.  He was in good spirits, I brought him a double quarter pounder and small fries from McD's and some juice, since he wasn't allowed to eat or drink since midnight last night.  He inhaled it.  Made sure he was alright, helped him put his feet up on the bed, turned off his lights and came back to the apartment.

I feel numb.  That is what happens when it hurts so bad, it is beyond the pain level of feeling, in order to protect your sanity. I can't even cry right now. 

Sunday 10/19/2008

Things have turned around and may be looking up....On the upside...

During rounds Dr. Schubach informed us that since they went back to the prednisone IV, his blood sugars have been really, really high (400-500's). They are checking these on an hourly basis, due to the fact that it is so high. This means that he was NOT absorbing the prednisone pills. They, at this point, do NOT want to do the new treatment, but are still going to do the biopsy tomorrow, just to make sure there is no CMV and to see where the GVHD stands. Also, he is still losing water weight, he is more energenic (which means prednisone is working), he has an appetite, they believe the GVHD is in the lower GI, which has in the past been been a lot better for patients since there is no nausea, vomiting, and they can still eat real food.

If they would have started the treatment right away, they would have thought that it was working. They tend not to go towards new treatments, if they don't have to, but they were VERY concerned at that point.  Dr. Schubach did confirm that the ATG was only a 50% chance and the new treatment would have been less than a 20-30% chance of working. Charlie still doesn't understand why everyone was so concerned. He did not sleep at all last night and was dozing during rounds this morning.
I am back at the apt, as I didn't sleep either. I will be going in later to get him for a day pass. They encourage these for the "soul", but we both need a nap before the day pass.

Saturday 10/18/2008

Went in around noon as Charlie was allowed a 4 hour day pass today.  We had a long serious talk about this new treatment and how concerned everyone on the bone marrow unit was about his condition and how scared I was.  It was very bleak.  It finally began to sink in to Charlie at the apartment and he needed to go lie down and get his composure.  He seemed more open to the idea of the treatment and was going to research it when he got back to the hospital.  On the way back in to the hospital, he actually fell down as he missed the curb.  Thank God he wasn't hurt.  Scary, scary day.  We both agreed to write down questions for Dr. Schubach for tomorrows morning rounds.  Sleep is a precious commodity.

Friday 10/17/2008

He didn't feel up to the day pass yesterday or today.  Brought him in two pair of sweat pants and one pair pajamas that will fit - had to go to store to get these.  We had a couple consults today.  Dr. Schubach, Dr. Chauncey and the staff feels the GVHD in the gut is not under control, due to cramps, bowel movements and measurements.  They want to do a biopsy and start a new treatment.  Charlie said no.  He feels good, it's just diarrhea  and he can handle that.  The thing is, he can see himself physically getting better from the side effects of the ATG.  He is losing weight, can eat and move around a lot better. 

If it is GVHD and he doesn't get the treatment, he will die.  Apparently the ATG treatment was a 50/50 chance to control the GVHD and the doctors believe it is back.  The new treatment, which I don't remember the name and they don't even have available at this time, will give him a 20-30% chance to control the GVHD.  Finally, Charlie agreed to go ahead with the biopsy, which will be done on Monday.  As for the actual treatment, we do not know yet. They are switching his prednisone meds back to IV's as his stomach may not be absorbing them as they should.

Dawn, the psychologist, was discussing death with me and how they would make him as comfortable as they can.  Charlie and I talked and he doesn't seem to realize how serious this is and that it can kill him.  His concern at this time is all the side effects he has already endured, how he feels like an experiment, he doesn't want to go through anymore and just can't wait to go home.  Really rough day for me.  He was actually in good spirits and I brought him a subway sandwich, since he couldn't eat lunch, because they didn't know if they could do the biopsy today.

Wed 10/15/2008

Just made rounds at 8:30 this morning.  They were discussing 2 hour day passes for Charlie if and when he feels up to it.  He's still having a little upset stomach, but the doctors don't seem too concerned about this, although it may affect his passes.  Only stayed for an hour today, will be back in tomorrow morning to see if he wants to go out.

Tue 10/14/2008

Charlie is doing a lot better today.  Counts are up, he was in a better mood, lost 30 lbs in 1 week due to lasix, prednisone tapering, leg wraps and low salt intake.  Still has low energy levels.  Left arm is still swollen, so we went to vascular and they believe it is a clot which will work itself out.  Things are starting to look up.  Stayed from 10am until 4pm.

Downside at home, the Volvo I am trying to sell has 3 slashed tires and the worthless Camaro I own has one slashed tire.  Am certain it has to do with the 34 yr old roommate I am removing from home, due to his trying to get rid of my 14 yr old dog.  His mother has also waged a "war" on me for asking him to leave at the months end.  So much for helping out others.  With friends like that, who needs enemies!!!

I feel like crap and my cold/flu is coming back.

Mon 10/13/2008

Went in yesterday and stayed for 5 hours.  We took two walks and watched football.  This morning he was very, very discouraged.  The swelling in his right arm went down, but nowhere else?  Dr. Schubach said they are just going to watch this.  They are tapering his prednisone, so his energy levels are way down.  He didn't want to do anything while I was there.  He just sat and zoned for 2 1/2 hours.  I'm back at the apt and got something to eat, going back in around 2:00, see if he is in better mood.  It's so frustrating for him.  No indication of any day passes at this time.  The doctor is very happy with his counts, they continue to go up, his kidneys are looking good, they are taking him off the magnesium pills, feel these are upsetting his stomach, but other than that he is definitely progressing.  Just at a very slow rate.

Filled out a hardship packet online with mortgage company to see if they can help any.  Grasping at straws.  Don't want to lose house, but don't know what to do.  Put car up for sale in hopes of catching up with Sept and Oct bills.  Waiting is the hardest part because all I have out here is time, low energy levels and lots of stress.

We are both very, very drained...

Sat 10/11/2008

We had a nice visit today.  Charlie is no longer neutropenic!!!!!  Yes!!!!!  His counts were around 700 today and he lost 4 lbs.  His electrolytes are low due to the meds, but he is receiving potassium, magnesium and all that through iv's to replenish them.  Still retaining alot of fluids and getting water blisters on his arms and legs.  This will take awhile to go down.  We took our stroll in the wheelchair, went outside for a little and fed the pigeons, went to the canteen and then back upstairs and played upwords.  Was there for about 5 hours and came back to apt to help Bonnie and Dennis load their car, since they are leaving tomorrow morning. 

Putting the house up for sale.  Cannot keep up with the mortgage payments and bills.  Time to let it go and move on.  My son is more important.  Have a good feeling about this.  Sad - yet good at the same time.  Like sweet and sour.

Fri 10/10/2008