Joy

"And Joy is Everywhere;It is in the Earth's green covering of grass;In the blue serenity of the Sky;In the reckless exuberance of Spring;In the severe abstinence of gray Winter;In the Living flesh that animates our bodily frame;In the perfect poise of the Human figure, noble and upright;In Living;In the exercise of all our powers;In the acquisition of Knowledge;in fighting evils...Joy is there Everywhere."
-Rabindranath Tagore, Indian Poet

The Doctor's are cautious to not say a complete response until up to one year from the treatment .. . . . . . . .but the treatment could not have produced better results as of this point. It was successful and the bone marrow is back to normal. We will have to go back in January and if the tests look the same they will announce that we had a complete response.

We would like to thanks everyone for all your prayers and support. We could not have gotten here without you.

Love,
Jack & Cheryl

We won't know anything until Friday afternoon

"The sea does not reward those who are too anxious, too greedy, or too impatient. To dig for treasures shows not only impatience and greed, but lack of faith. Patience, patience, patience, is what the sea teaches. Patience and faith. One should lie empty, open, choiceless as a beach - waiting for a gift from the sea." -Anne Morrow Lindbergh

Now it is all coming back. We do the tests and the doctors get all the results and have their big pow wow on Friday and then they will call us and tell us what is what. We will post when we hear.

The good news is that looking at our schedule, we will be done tomorrow with the testing, so Wednesday morning we will get up and head down to Cape Cod.

Jack & Cheryl

We are home

"I have always looked at life as a voyage, mostly wonderful, sometimes frightening. In my family and friends I have discovered treasure more valuable than gold."
--Jimmy Buffet (A Pirate Looks At 50)

We have arrived safely at home. Jack is enjoying visiting with his kids.
Home phone number is 704-274-5514.

We will be settling into normal routines over the next couple of weeks (plus a number of doctor visits) and will plan our trip back to Boston in July. Thank you all for the encouragement, good wishes and prayers!!

We have a plan!

"Each of my days are miracles. I won't waste my day; I won't throw away miracle."
--Kelley Vicstrom

Jack's platelet count was 24 today!! Even the doctors are excited! We are working on getting the oxygen stuff picked up and tomorrow we are going to the clinic for more labs and a day of paperwork - DISCHARGE PAPERWORK!! Everything will be spelled out on that volume of paperwork - medications, doctor appointments, return visit to Boston, etc. A copy for us, Charlotte doctor, and anyone that I may need on the way home (God forbid!)

Our plan is to work on packing up the apartment today and tomorrow and begin the trek home on Wednesday. We will take our time and just do as much as we feel like.

Jack is on the phone now making his appointment with Dr Parker (our Charlotte doctor) for next week. He needs to see him every two weeks for a month and then monthly after that. We will also get our appointment for July in Boston to see how much progress we have made with all of this. I will have to start planning our trip to the Cape or wherever since I will know the dates.

Needless to say but we are both very happy, relieved and ready to go home!

"Afoot and light-hearted I take to the open road, Healthy, free, the world before me, The long brown path before leading wherever I choose."--Walt Whitman ("Song of the Open Road" Leaves of Grass)

Jack & Cheryl

The promise of a new life. . .

"The future is not some place we are going, but one we are creating. The paths to it are not found but made, and the activity of making them changes both the maker and the destination."-John Schaar

Yesterday we had a long outing since we did not have to go to clinic - took a ride down to Cape Cod. Drove by Nobska Lighthouse, the beach, around Woods Hole, by the Martha's Vineyard ferry, Yarmouth and Hyannis. Jack said that it was his favorite road trip to date. Maybe I will plan a few days at a bed and breakfast in July when we go back for the checkup. (I am planning on doing it before we go to Boston this time - the news from Boston last time did put a damper on the Maine excursion last summer!)

This morning we braved the snow and showed up to the clinic at 9AM. Jack got one bag of platelets (with no adverse reaction [yeah!]) and they removed his central line. We will go back in Monday morning and discuss what the plan is to get us sprung. I even called Blakely to warn her - she is in charge of getting the townhouse sterilized (cleaned, change linens, air filters, etc). Even if we get our note to go home the middle of next week - we will need to watch the weather and it will be a 3-4 day trip since I am the only one that can drive and Jack has his limits to the riding thing.

Will keep everyone posted.

Day + 34

We are watching platelets more than anything right now - his white and red counts are hanging in, we just have to wait to finish the anitbiotics for the infections, pnuemonia, etc and give them some time to get come back on their own without all this extra work to do. We also don't have comparative numbers from last year ( we were already on our way home!)

We have tomorrow off from the clinic (which concerns me because that is always how trips to the hospital start - so let's all cross our fingers that this will go well). Todays platelet count is 10 down 2 from yesterday. The plan is that unless there is a huge increase in the platelet count, on Friday we will be giving Jack platelets (more finger crossing!! and then they are going to remove his central port. It has served it's purpose well at this point and we do not want to leave it in to chance an infection in that.

We just got back from lunch at Whiskeys - Jack even had a meal out of the apartment or hospital. His horizon's are starting to expand a little.

Later we are taking a field trip to take Blakely to the airport - it was nice having her here to help interpret what it is that Jack seems to need at any particular second. I am sure that he will notice the service quality drop that he will experience tomorrow!! He needs to be brought back a little at a time to real life!!

Blakely feels that it is time to prove that I am actually still here taking care of Jack - it can be challenging sometimes but the weather also discourages me from walking out the door and following the street towards the sunset!!

Counts

We are back to watching counts - his white count is 3.0 (normal range is 4.0 - 11.0) and red count is 3.25 (normal is 4.6 - 6.2). These are on there way up and pretty much on schedule considering all the infections and antibiotics supress these from coming back.

The platelets are always the issue for us it seems - right now his count is 12 (normal is 150 - 400 and they will not even think about letting him come home until the counts hit 50). I think that they were considering giving him platelets today in clinic but no one wants to do that. We have to go in tomorrow at 9 AM and take blood again - I am figuring that if there is not some kind of improvement , then he will have to get platelets.

Blakely is going home tomorrow night so we will be left on our own again. Jack is still taking breaks from his O2 (breathing?) but the doctors aren't worried unless he gets dizzy or short of breath so I will let him work that out on his own and see what happens(?)!

Blakely is in charge for a few days

She can figure out Jack's dinner requests that are very random yet very specific at the same time. (Even if she did turn off his O2 the first night!)

We made a trip to the hospital on Sunday - They checked his vitals and took some blood. That was our first adventure out dragging oxygen tanks with us. Today we took a ride to Glouster, MA (had to vacate the apartment for the cleaning ladies). Drove along the beach, stopped for lunch then made a quick driving tour of Boston for Blakely.

We did bring Jack back to the apartment and then Blakely and I went to the Skywalk Observatory in the Prudential Center (50th floor)and got some education (and a drink at the Top of the Hub (52nd floor of Pru)).

Tomorrow is clinic day so I will be able to find out where his counts are now and see what the plan is around the oxygen.

Jack's 3 bastard sons showed up!!

"I cannot even imagine where I would be today were it not for that handful of friends who have given me a heart full of joy. Let's face it, friends make life a lot more fun."--Charles R. Swindoll

Even though the pictures did not come out great - the visit was. These guys are nuts - it was one hell of a road trip but we sure loved seeing them!!

We got a delivery of all this oxygen equiptment last night about 10PM and everything worked great until we fell asleep and the very loud alarm kept going off. It was not a banner night however the tech came back first thing in the morning and switched out the machine (it was not something that I had missed!). Things seem like they are working so far and Gene, Lloyd and Phil even offered to go to the hardware store and get duct tape or gorrilla glue if Jack had a problem leaving the nasel piece in place!!

The guys did get him a new puzzle so that should distract him from pulling out the oxygen.

Jack is napping now from all of the day's excitement and tomorrow I get to bring him into the hospital to visit a nurse and the fellow on call - they did not want to release him for 3 days (another Monday holiday) without someone checking on him. Monday is cleaning day so I will have to take Jack for a car ride or something to let the girls come in and do their thing.

Who would have thought?

Guess who is hanging around the apartment? That is right - Jack got sprung with strict instructions from Dr S to be good.

You will see from the picture that he did not quite get off of the oxygen yet - We are expecting the home health equiptment company to show up tonight between 8 and 9:45 to deliver more portable tanks and a machine for in the apartment. I also have 5 more prescriptions to go downstairs to pick up also.

We have to go into the hospital on Sunday so someone can look at him and make sure he is behaving and then back to the clinic on Tuesday.

A better day

"I think these difficult times have helped me to understand better than before how infinitely rich and beautiful life is in every way and that so many things that one goes around worrying about are of no importance whatsoever."--Isak Dinesen

He must have been on his best behavior because it is Valentine's Day! Still don't have the RSV test results back but the physical therapist girls did hook him up to portable oxygen, put a mask on him and paraded him around the circle that is 7 East. Jack says that it was the Valentines day parade - Jack, the 2 PTs and a nurse. Makes the New Cumberland 4th of July Parade look massive!

Jack was awake for most of the day when I was there today and he assured me that he would be done and ready to go home before the apartment lease is out. Very optimistic today but I am a little skeptical - I guess that is what works for us - a little balance even if it is not a meeting of the minds! It was a least nice to be able to share some of the obstacles that are outside of the hospital room and get a response!

They have reduced his O2 to 2 liters from 5 and his stats are holding there own (not great but keeping the alarm from going off). Kathy Finn came by tonight to take me out for coffee ( Dr S wanted to make sure that I wasn't falling apart so she assigned Kathy to babysit!). Kathy did bring Jack a box of chocolates and brought me a shaving kit - I guess they are worried that I am not shaving my legs since Jack hasn't been out of the hospital for over 2 weeks??!! I did get Jack a meatball sub that he actually ate for dinner - Valentines Day dinners are easier to provide when the hospital cooks set the bar fairly low!

Hope everyone is doing something a little more romantic!! I think that next year - I will have to make the arrangements!

We are starting to push the envelope. . . .

Jack must like to stress me out - he is going to pay for this someday!!

The RSV test should be back tomorrow so we can get a better idea of where we stand. Still have over 2 weeks of medication for the PCP - they did change the antibiotic that they are treating that with since the original one is keeping his counts down. It would do that to anyone that is taking it but we could all handle it better than Jack can right now. I also had Dr S send out a message to Dr Berk since Jack's oxygen stats do not really seem to be improving. I would like to get some answers on this so that I can figure out if the 2 weeks that we have left with lodging up here will be enough or if I should start scrambling now to see if I can extend the apartment for a week or 2 or if I need to prepare to pack up and find a hotel. Jack will not be able to come back to the apartment even until he weans off of the oxygen.

At this point , I have no idea how long we will be up here but as long as Jack gets better and comes back with me, I will work the other stuff out.

still going slow

We are going to retest to see if he is clear of the RSV to see if we can get Jack moving outside of the room - 2 weeks in the hospital has made him very weak. Physical therapy did come in today to work with Jack to start to build up his strength. Need more improvement on the oxygen front as well.



Jack has also had a combination of not eating / or losing what he does eat. We surely have an uphill battle still but on the bright side we are not dealing with any new issues. He will be getting some blood tonight since his red blood cells have dropped - his platelets are also low but since there is no bleeding, we are going to let that go a little and see if they will come up on their own.

It is snowing now so I may be a little later going in tomorrow morning. I am sure that will not be a popular move but it is going to warm up as the day goes on and it will end up as rain so I will have to see what the morning brings. That and my cold still hangs on but it is improving and is not even on the radar in the grand scheme of things.

A little spark at last!

I am not sure if it is the fact that I spent more time then usual outside of his hospital room and he got nervous or what but this evening he was awake for the better part of 4 hours, ate a little (even though that was a short term victory) and he replaced his oxygen after using his nasal spray!

This morning, I did go down to the ER myself to verify that my illness is nothing dramatic. I know have the most expensive cold in history I am sure. Thanks Dr Tedmon for your assistance – and for you to offer up trading the Bahamas for Boston in February. Very kind but aren’t you glad I did not take you up on that one! I thought it was enough when I called you to help us pay our mortgage!! (Luckily I just needed the name of the Jr. High school the he went to with Jack – this is not our usual bill paying computer so it has been asking me random questions).

When I got back from the ER and showed Jack my bracelet he did ask me what room I was in. From there I went back to the apartment – ate some soup, paid some bills and took a nap. When I got back to the hospital for the second time – Jack had taken his oxygen off and tried to explain to me that the nasal spray was the replacement. I checked his stats and his O2 was in the 70’s. I went and got the nurse to correct this – she did tell me that she had been in there lots when I was gone and that he was good - had gotten up and wandered around the bed a little, et. She thinks that he saves all of his foolishness for me!! What a guy!

He is not up to phone conversation still but Mary insisted that I put the phone to his ear so I did and told him to grunt so she would know he was there – I think the pig grunts were a little on the dramatic side and probable scared Mary more than she already is. Sorry, Mary.

Jackie – what you wrote on the blog was very sweet. He has not read it yet but I did tell him about it and he did get a little teary eyed.

When I left tonight, he told me to be careful which was a normal admonishment until about a week ago so at least tonight he is showing signs of his old self. That is great because I missed him!!

There was also a pretty snowfall for my drive home so tonight I will sleep much better than I have in a while!!
Goodnight all.

Lets get the cards & letters coming!!

We are 24 hours into the antibiotic for the PCP and have started a Immune System booster to see if that will help with the RSV. Everyone coming into the room is fairly decked with masks and gowns since we are under airborne precautions. We got moved to a reverse air room to draw out any germs that are flying around and these days there is an abundance.

I no longer have a fever - just sore throat, cough, runny nose and gererally feel like crap. Made a deal with the doctors that I would go home after dinner time and get more rest.

I would say Jack may be about 1% better today. The breathing is a little easier and he is leaving the oxygen on more consistantly. He still seems very down and out of it.

Leslie, I think you might have a great idea since he is too sick to even look at the blog - that if everyone sent cards to him in the hospital then he would know that folks have not forgotten about him and what he still needs to fight though.

The address at the hospital is:

Boston Medical Center

88 East Newton St

7 East, Room 14

Boston, MA 02118-2999

We have diagnoses and a whole new set of challenges

Here is what we have to date:

• Diagnosis #1. Pneumocystis carinii pneumonia (PCP) is a fungal infection of the lungs.PCP is a pneumonia caused by the fungal organism Pneumocystis carinii (now renamed Pneumocystis jiroveci). This organism is common in the environment and does not cause illness in healthy people. However, Pneumocystis carinii can cause a lung infection in people with a weakened immune system due to any of the following conditions:Cancer ,Chronic use of corticosteroids or other medications that affect the immune system HIV/AIDS ,Solid organ a,d/or bone marrow transplant PCP in those with AIDS usually develops slowly and is less severe. People with PCP who do not have AIDS usually get sick faster and are more acutely ill.Symptoms : Cough -- often mild and dry , Fever , Rapid breathing , Shortness of breath -- especially with activity (exertion) Exams and Tests -Sputum induction (to detect Pneumocystis carinii) was how they found it in Jack.Treatment -The main treatment for PCP is with drugs that kill the bacteria (antimicrobial therapy). Antibiotics can be given by mouth (orally) or through a vein (intravenous) depending on the severity of the illness.People with low oxygen levels and moderate to severe PCP often take corticosteroids as well. This is usually a 21 day protocol so I will need to get a better idea of how he is reacting in the next couple of days from the doctor - that may have an affect of whether we are out on the street, if I need to extend the apartment????Outlook (Prognosis) Pneumocystis carinii pneumonia can be life-threatening, and respiratory failure can lead to death. People with this condition need early and effective treatment.
  
• Diagnosis 2-Respiratory syncytial virus (RSV)Respiratory syncytial virus (RSV) is a very common virus. This virus causes mild, cold-like symptoms in adults and older healthy children. It can cause serious respiratory infections in young babies, especially those in certain high-risk groups. (JACK)Causes --RSV is the most common respiratory pathogen in infants and young children. In healthy adults and older children, RSV is usually a mild respiratory illness. Although studies have shown that people produce antibodies against the virus, infections continue to occur in people of all ages.Each year up to 125,000 infants are hospitalized due to severe RSV disease, and about 1-2% of these infants die. Infants born prematurely, those with chronic lung disease, those who are immunocompromised, and those with certain forms of heart disease are at increased risk for severe RSV disease. Symptoms -Breathing difficulty or labored breathing , cough ,Cyanosis (bluish discoloration of skin caused by lack of oxygen) ,Fever .Nasal flaring ,Shortness of breath ,Stuffy nose ,Wheezing Note: Symptoms vary and differ with age. Infants under age 1 are most severely affected and often have the most trouble breathing. Older children usually have only mild, cold-like symptoms. Symptoms usually appear 4-6 days after exposure.Exams and Tests -Rapid tests for this virus can be performed at many hospitals on fluid obtained from the nose.Treatment -Antibiotics do not help in the treatment of RSV. Mild infections go away without treatment. Infants and children with a severe RSV infection may be admitted to the hospital so they can receive oxygen, humidified air, and fluids by IV.A breathing machine (ventilator) may be needed.Outlook (Prognosis) In older children and adults, the disease will usually be quite mild.Some evidence suggests that children who have had RSV bronchiolitis have an increased risk for asthma.
  There is medication for this that is given under a breathing tent - the doctors have called the pharmacy to see if they have any (but since it is usually a kids disease they would need to see if they have enough that would make a sensible dose for Jack). Also this is not the kind of equipment that they use in Boston Medical so there has been discussion of moving him to another hospital for this protocol.
  This can also be transferred so everyone is gowning and masking before going into Jack's room and they wanted to ensure that I was not pregnant since it could cause complications.
  
• 3rd issue - I have been running a fever, sore throat, headache, etc. Not sure what that is about - just run down or what. I did just get a call from one of the doctors that was making rounds and seems Jack was coherent enough to share since the doctor called to find out what is going on with me. If I am still sick in the morning - I guess I will hit the clinic or ER and get a few tests of my own. We are a party kind of couple!
  
• I hope that the antibiotic for the PCP has a dramatic effect in the way Jack feels - my major concern as if the above wasn't enough is his attitude. He has gone too long without feeling well and seems distant from the process. He is usually on top of asking what is going on and what is next, etc but he seems to have lost a little interest. I will have to ask the doctors for an attitude adjustment pill.

Day & 19

Jack was a little less resistant to keeping the oxygen on but we still had a few discussions around it. Nurse Leeann explained to him that if he did not keep it on he would have to go back to ICU or be restained. She loves Jack (they bonded last year when he was a lot more personable than he is now!) and she was concerned and explained to him that without the help his O2 is at an unsafe level and that she was worried about him.

Dr Berk came in for a consult and believes at this point it is a combination of Jack being a shallow breather to begin with and then he came here and they made him sick, gave him lots of fluids and he has been bedridden for a week. They did a cat scan but he said that even though it was a little blurry ( Jack must have moved) that he did not see anything there that really concerned him.

They are still giving him antibiotics in case it is a bacteria that has not shown up yet. I would feel a whole lot better if there was more improvement or if we at least knew more about why his O2 level is sooo low.

As for me - I am exhausted and more than a little frustrated but will keep on keeping on!! Time for dinner and bed!!

An uncooperative patient

"It is easy to dodge our responsibilities, but we cannot dodge the consequences of dodging our responsibilities."--Josiah Stamp

Jack had many tests today and his liver and kidneys are bouncing back nicely.

His breathing however is awful. his chest sounds like an old creaky house with rattling windows. Took more fluid off, more chest xrays, more tests, etc but our biggest challenge around this is Jack himself. He promises the doctors and the nurses the world and as soon as they leave the room he is taking the oxygen off. I put it back on and he yells at me that he is on a break - ( I am thinking that him being on a break from breathing is not a good plan). I feel like I have been fighting with him all day but he will have to get over that. I just hope that this takes turn for the better tomorrow so things will go a little smoother.

I am beginning to get over the pain!

"Giants-Patriots Super Bowl the second most-watched TV show ever
Associated Press
NEW YORK -- The New York Giants' thrilling win over the New England Patriots was the most-watched Super Bowl ever, with 97.5 million viewers, Nielsen Media Research said Monday.
The game eclipsed the previous Super Bowl record of 94.08 million, set when Dallas defeated Pittsburgh in 1996. More people watched Sunday's game than all but one American television broadcast ever, the "M-A-S-H" finale in 1983, which was seen by 106 million viewers.
The game had almost all the ingredients Fox could have hoped for: a tight contest with an exciting finish involving a team that was attempting to make history as the NFL's first unbeaten team since 1972.
But the Giants ended New England's bid for perfection, 17-14. Throughout the game, the teams were never separated by more than a touchdown."

Well since my parents are Giants fans – I guess now I am an orphan and need to get adopted. Anyway it was a good game – a Superbowl that you had to watch until the very end and the Patriots had a great season. George and Terry did suggest that if I had trouble dealing with it that I could steal some of Jack’s meds to ease the pain! Thanks for looking out for me, guys!

Jack’s kidney and liver function are improving. Right now he is starting to develop trouble breathing and a cough because of all the fluids that he has gotten and lying in bed all of the time. He did get moved upstairs and out of the ICU so there will be less things attached to him so maybe we can get him up and around a little more!

Superbowl attire

Jack woke up and reported that the sitter was mean - she would not let him do anything unless a nurse was in the room. Seems to me that she did a great job.

He has been given some lasik to start dealing with some of the fluid that he has collected in his body. He was sounding wheezy and had a cough so we need to make sure the fluid does not collect in his lungs (He got yet another chest xray today). His blood pressure seems to be holding even with the lasik (everything these days is a balancing act) so if all of this holds up we should be kicked upstairs to the oncology unit. As you can tell from the picture, Jack has actually spent some time out of bed today although he can't go far - there are a lot of things tethering him to the bed.

So far we have managed to get some chicken wings and Nurse Debby just came in with some salsa and chips so we are feeling a touch like we are having a normal football day.

Next year hopefully we will be home having a superbowl party at the house with a hospital theme!

This is a more normal state for the last few days. . .

Another Superbowl from the hospital

"The Giants may be a team of destiny but the Patriots are a dynasty."

Jack got his platelets at 10:30 last night and I am pleased to report that it went very well (A non event!). I got ready to leave a little after 11:00 once I was convinced there would not be any adverse reaction (Jack was sleeping) but I had to hang around for another half hour while we found a "sitter" for Jack. He did have a good night - slept well (is still asleep as I type!) and I had no reports of him trying to escape.

I brought him his Patriots shirt and we are all set to go! Will update again later as the day progresses.

Still in ICU - Day 3

Still no fevers and Jack is on oral blood pressure up medicine which seems to be doing its thing until about an hour before his next dose is due. We are managing the in between time with fluids - next week we will have fun taking medication to get all of this extra fluid out of his body - but one thing at a time.

I just took myself an hour nap in this chair so I am less tired but I believe there has been some
permanent damage done from the wooden arm and my ribs not interacting well. There is wireless access from here so I have been able to update the blog but I can't (or am not allowed )to use the cell - I did get caught a couple of times! The best way to communicate until we get sprung is through email (czaney @hotmail.com) or the blog.

Jack has been sleeping for the most part of the last 2 days so that is good. He has had a guard (nursing assistant) stationed in his room for whenever I am not here since he has attempted to get out of bed and has been unhooking all the special monitoring lines and tubes to make a break for it. He is also still fairly confused - complaining that they wouldn't put the flowers on the music (?) and going on about pillow choices 1, 2 or 3??? I am sure he will explain all that when he wakes up more and that it is something that I should be handling but I will need clearer direction!! He has also promised not to get out of bed without help but since he is not making much sense - don't really believe him!

Still nothing from the cultures so the source of the fever is still a mystery. They repeated his bloodwork since his platelets came back at 11,000. If the second result is the same, we will have to go down the path of giving him more - have to weigh that risk with the risk of spontaneous bleeding from the platelets being so low. Results just came back from that - he will need platelets. Let's cross our fingers that that will be as uneventful as when he got them last Monday. The will pre-medicate him with steroids, Bendryl and Tylenol. His white blood count was 1.9 this morning (second result was 2.3) so he will get a growth hormone shot to boost those up some as well.

They have just brought up his gourmet dinner of Salisbury steak (I think?) so I will try to convince him that is work eating and if not - his carnation breakfast.

Still in ICU

Jack hasn't run a fever today (yet - knock on wood) and all of the cultures and skin biopsy have come back negative so we still don't know why he started running them in the first place. His bouts of low blood pressure have taken a hit on his kidney and liver (both are still functioning) so we will learn more on that in the next couple of days. The damage should be able to be reversed and have no perminent affect.


He did not sleep well last night and so has been making up for it today. They put him on the IV blood pressure medicine last night but have since weaned him off of it during the course of today and also he has let go of the oxygen assistance so we are making progress towards getting him at least out of ICU and into a regular hospital room. He has not really eaten too much today since he is sleeping though all the meals - not that he loves the hospital food anyway.


It also seems that in between sleep and awake he is working on all the problems at work - something about the team and calling someone's boss, etc. Nothing real clear but I will be sure to note any break throughs so he will be able to follow up! The doctors asked him who I was when I walked in the room and he did come up with Mrs. Zaney so I will have to make sure that he knows my first name when he wakes up.

Back in ICU

Posting for Cheryl. Jack's back in ICU. He started running a fever yesterday & they went to the ER around 7pm. They started him on antibiotics and did blood cultures. His blood pressure is really low. He started having rigors again and is very agitated.

They are monitoring him closely. Cheryl hasn't left his side.

Pray in Jesus' name for them both.

Mary

Socializing and rest

"All work and no play makes Jack a dull boy." --John Bay

Seems like things got busy at the clinic after we left - the president of Boston Medical came by to wish us happy anniversary. Seems she has a picture of the three of us in her office from the wedding last year. She did make a return appearance today to wish us the best and let us know that she tells everyone our story when they go to her office and notice the picture. Dr Skinner also dropped by today (head of the Amyloid Program ) - wonder if they are wondering why the Hospital president is visiting us and thinking that maybe they should cover their bases in case we are important (?) or something?

The dermatologist also showed up 24 hours early for Jack's consult - he still has a rash from the reaction to the Dermerol. They also came back today and did a skin biopsy (which made me just a little nervous since they made him BLEED). He did clot normally so I am a little less nervous.

The counts for today are looking good as expected - white blood cells are down to 5.4 from 6.1 yesterday (normal is 4.0 - 11.0) - this is to be expected since the growth hormone shots promote quick regeneration but those don't stay viable for very long, Red blood cells is 3.08 down a little from yesterday's count of 3.17 (normal 4.6- 6.2) and the platelets have gone up to 21 from 16 yesterday so that may explain the good clotting (normal is 150 - 400).

We had to make a trip to the drug store to get yet a different medication to help clear up the last of the mouth sores (they are not bothering him anymore - just haven't cleared all the way up ). Jack's blood pressure was a little low again but instead of giving him IV fluids - he is supposed to drink lots of fluids himself so they don't all go and settle in his feet.

I will have to wake him up from his nap in a little while and get him back on that task. We also got a get out of jail free card tomorrow so we do not have to go back to the clinic until Friday barring any problems that could arise.

Whatever will we do??

=

What a year this has been!

"But groundless hope, like unconditional love, is the only kind worth having."-- John Perry Barlow

Can't believe a year has slipped by! We picked up a cake and brought it to the clinic to share our anniversary with all the folks that were there for our wedding!! We do hope to do something a little more fun next year!

The counts for today are looking good as expected - white blood cells 6.1 (normal is 4.0 - 11.0), Red blood cells 3.17 (normal 4.6- 6.2) and the platelets have gone up to 16 - still very low (normal is 150 - 400) but he is making some on his own which is a positive sign because we still don't want to have him get any after the last fiasco!! He is still under strict instructions not to bleed.

We did get sprung early from the clinic and did a late lunch at Legal Seafood to celebrate. Jack held up well until the walk back - he was pretty tired at that point and tried to get a cab but since we were only a block away he couldn't get anyone that was interested. We made it back and Jack took a well deserved nap!!

Forward progress

"Ability is what you're capable of doing. Motivation determines what you do. Attitude determines how well you do it."--Lou Holtz

Jack has good counts on the white blood cells 5.4 ( normal 4.0 - 11.0) and red blood cells are 3.30 (normal is 4.6 - 6.2). These cells are the result of all the growth hormone that he was getting so they will be short lived but the idea is to get him something to work with until he is able to make some long lasting strong ones on this own.

He has been taken off all medications except for the Protonix which are to control or reduce stomach ulcers or upset stomach. He will take those for 3 months. So that has made my life much easier since instead of counting out 11 pills and dispensing them we are down to 1 pill a day.

The doctors also mentioned that when his counts are to a level that they deem acceptable they are planning on taking out his line early. Even though they will have to draw the blood for his labs from his arms, they do not want to risk having it get infected - it was bad last year - they are not trusting him to be good and low maintenance for the entire time he is here!!

The platelets are down 13 ( normal is 10 - 400) but with all the excitement from the last platelets that he received - neither the doctors, jack or myself were less than excited about getting more so we decided to give it another day and see what he can do on his own. His blood pressure was pretty stable today so he did not even have to get fluids at the clinic today.

We watch Caddyshack and he was sprung early so we walked over to a sub shop where Jack actually ate a fairly normal size lunch so that was our day. Jack is under STRICT instructions not to bleed so if he follows doctors orders he will be good until tomorrow!!

Also the puzzle is finally complete - we are going to have to find some other outlet (or another puzzle) to fill our brilliant social life so we don't kill each other!

Jack is detoxing well

"This seems to be the law of progress in everything we do; it moves along a spiral rather than a perpendicular; we seem to be actually going out of the way, and yet it turns out that we were really moving upward all the time."--Frances E. Willard (A Wheel Within a Wheel)

Today thankfully it was a quiet day. We went into the clinic and Jack got some fluids for his low blood pressure and did not need any blood or platelets (Thank you, God).

Also, the most significant item are his counts - we are starting to take!!

White blood cells went from 0.2 yesterday to 0.5 (normal range is 4.0 - 11.0) He doesn't have much so I still have to be on guard for fevers, etc but we are on the rise! ( Last year's number on Day + 8 was 0.2 so he is grafting faster).

Red blood cells are at 3.38 (Normal range 4.6 - 6.2). Last year's number was 3.24.

Platelets are 38 (Normal 150 - 400). Last year's number was 11.

Jack has also spent some of the day awake and even had a conversation with Stem Cell Kate about his progress so far. He did tell her that he thinks this round is worse than last year's but she told him that he is making more progress even though he did have Melafin recall. There is a good deal of last year that Jack doesn't remember - or the memory is faded. We told him that from our perspective last year was the winner for the more difficult process and that we were more than willing to keep it that way. No more surprises are necessary.

Good drugs & BAD

It seems that we are having trouble getting through a couple days in a row without some exciement.

Yesterday was good - Jack just got some fluids in the clinic since his blood pressure was on the low side. Jack also has some mouth sores from the chemo so they put a pain patch on his arm. I lent Dr Sanchorawala the necklace that I had on since she had a speach to make that evening and hers broke in the morning. His white blood count was > 0.2, red blood cells 3.74 and the platelets were up to 39 (remember he received 2 bags the day before). That was yesterday.

Now, back to reality. Today, Jack felt dizzy and it was all I could do to get him dressed and to the clinic. He was showing major signs of drug abuse - neither the doctors or I could get him to respond to questions or have any kind of conversation (worse than it has been). We have reduced the daily drugs that he is scheduled for. His labs were run and the results are - white blood cells are now 0.2 (we have lost the less than sign - he actually has some - although not too many but they are on the rise which is good news), his red blood cells are holding at 3.74 and the platelets were 20 so the plan was to give him 2 more bags of platelets. Should go just like Tuesday - right? WRONG.

After bag one of the platelets, Jack started shaking ( rigors as a reaction to the plasma that the platelet are in ) and so they gave him a shot of Demerol to control that. Well, we learned that Jack is allergic to Demerol. Shortness of breath, he started wheezing, broke out in a rash all over his body, etc. Now comes the Benedryl to control the allergic reaction. Out comes the oxygen to help him breathe. We thought he was too drugged before?? (They did also remove his pain patch in the hopes that he will begin to come out of the fog and back to us)

Once all of the above settled down, I went and got the car and the nurse brought Jack down to me in a wheelchair. That is all well and good but when I got back to the apartment, I had to convince him to get out of the car, in and out of the elevator and into the apartment. I made him macaroni & cheese for dinner since he has trouble eating anything that is not soft with the mouth sores. He sat at the table with it in front of him and was basically asleep sitting up. When I tried to get him to go to bed, he said that it was rash of me since he had not had one bite of his sandwich(?). After that, I felt that it was better just to leave him alone. The good news is that he is now in bed - but he did sit/sleep at the table for about 1 1/2 hours. (It looks like he did take a bite or two in that time!)

I have to wake him up at 9 PM to give him another pill but hopefully in the morning, he will be more willing and able to make our daily trek to the clinic!!

We are starting the counting

Every now and then go away, have a little relaxation, for when you come back to your work your judgment will be surer. Go some distance away because then the work appears smaller and more of it can be taken in at a glance and a lack of harmony and proportion is more readily seen.--Leonardo Da Vinci

Now is the time that we begin watching the counts - right now Jack has no white blood cells to fight any type of infection. He does take 3 different type of antibiotics daily but I have to take his temperature several times a night to make sure he has no fever. He has to wear a mask anywhere other than the clinic or apartment and hand sanitizer is going by the gallons!

His white blood cell numbers today were <.02 ( normal range is 4.0 - 11.0) Last year's numbers on Day +5 (5 days after stem cell reinfusion) were the same as they are now.

Red blood cell count today was 3.76 (normal range is 4.6 - 6.2). Last year's count was 3.38.

The platelets today were also critically low 19 (normal range 150 - 400). Last year's number was 142. The platelets are what help the blood to clot so if Jack had a cut or sore that started bleeding it would be a major issue. He got 2 bags of platelets today in the clinic before they sent him on his way so he should be in better shape now. This should show when we do the labs again tomorrow.

Before he got the platelets, they did give him some Benedryl to help in case he got an allergic reaction to the platelets - so he is sleeping. He has been doing a lot of that this week. Between the piles of drugs that I give him daily and what they give him at the clinic, he has been sleeping , fairly incoherent and definitely not talkative so he has not been near his phone and is not up to conversations. Answering yes or no questions is about the extent of his conversations these days and those sometime need to be repeated before he feels it is necessary to answer. ( I may take up talking to myself!) Anyway, don't take it personally if you have called him and he has not returned the call. Next week his drugs should be reduced and his counts should start rebounding and the doctors will start bugging him to get more active so maybe by then he will start to reconnect!

2008 AFC Champions!

Today an yesterday we went into the hospital so that Jack could get his shots. Yesterday we even made a trip to the grocery store on the way back from the hospital.

Jack is spending most of his time sleeping, not feeling well enough to talk on the phone but greatly improved from the hospital days.

He even watched the game with me on and off - He help wish in a few of the critical touchdowns for me. Sorry Lee, but you do keep rooting for the losing teams! 18-0 not too bad so far!!

Onward and upward

If there is no struggle, there is no progress. Those who profess to favor freedom, and deprecate agitation, are men who want crops without plowing up the ground, they want rain without thunder and lightning.--Frederick Douglass

Not sure how we pulled this off from where we were Tuesday, but Jack is back at the apartment. I knew he was well on his way when he started complaining about being in the hospital !

When Dr Berk came in this morning, Jack already was clearing the path - explaining how he would be rooting the Patriots on if he could watch from a TV in the apartment. It was Dr S's decision ( and he had already warned her by the time she showed up at the hospital). A little more schmoozing, a couple of Starbursts and many promises later, she agreed that he could be discharged.

So here we are - I actually get to eat dinner before 11 pm. We have to go into the hospital for the next 3 days to get his shots which takes about half an hour and then we are back to the apartment. We do have a puzzle to finish after all!

A better day and a new beginning

Jack is much better today (although he did put the bar rather low on Tuesday). He is down to 2 mg of the blood pressure medicine from 10 this morning and his top number is in the triple digits so that is an improvement. He still is needing a little help with the oxygen.

He did get the all important stem cell reinfusion today so all major procedures are complete - we just need to work on getting stronger and making new blood cells.

We expect that he will get moved out of ICU and into a regular room tomorrow morning.

What a night. . .

They decided to put Jack in ICU so they could monitor his oxygen levels - good thing since during the night he ran a fever, the steroids they are giving him to counteract the melafin reactions caused his blood sugar to go up and he needed insulin and his blood pressure took a dive.

He is stabilized and they are reducing the amount of steroids and are weaning him off of the blood pressure medicine and oxygen ( he is almost off of that totally). They have been giving him IV Benedryl every 4 hours so he has slept through most of the excitement.

The plan is to keep him in ICU through tomorrow and do the stem cell infusion there. He does not get anymore chemo we should be on the upswing of dealing with his reaction to the drug.

His doctor did come to me with a list of 11 patients ( She added Jack to the list today as #11) that since 2001 had a second transplant and had a severe reaction to the chemo (fevers, rashes, etc.) . She did say that Jack's wheezing was unique to the list but the other problems are represented among the other patients. Of those 10 - all are alive and in remission so she is very confident that there is a light at the end of this mess!!

Need to run - grab some food and a shower and get back to the hospital.

Will keep you all posted.

Not good

Jack has what they thing is "Melafin recall" and his body has had a bad reaction to the chemo. He was sick all last night starting around midnight and today he has been wheezing so has had a battery of chest xrays, tubes down his nose, nebulizer treatments, oxygen, etc. His skin is also red on his chest and back. He has been admitted to the hospital and will probably be there until right before his stem cell infusion or they will arrange to do that in patient. I am on my way back to the hospital with personal stuff for Jack ( they were taking him for another set of chest xrays when I left) so I will try to update more soon.
Pray for us.

Catching up

Our view from the window has changed from last year - we are on the front side of the building so that hopefully Jack will have less to monitor out the window if he can't sleep.

Jack had his line put in on Thursday and has had much less trouble with that process than he did last year. The line is smaller and even though it was uncomfortable for a few days, it was nothing that a couple of Tylenol couldn't handle.

Friday was a rainy dreary day so we talked the doctors out of a baseline test and just hung around the apartment for the day.

Saturday we took a ride up to New Hampshire and had lunch at a little place near Hampton Beach. Jack's fish and chips were "the best he ever had". Hopefully this will help break him of his chain restaurant preference.

Also we spent the evening enjoying some great football! Yea Pats!

Sunday was the day for the haircut, so we are ready for tomorrow (chemo begins). ( On our way back from the haircut as we walked by Symphony Hall, we ran into Deb Ryan and her family - it is a small world!)

They are forecasting about 12" of snow for tomorrow into Tuesday so our mile and a half commute should be fun!!

Jack & Cher

and so we begin. . . .

"The achievement of your goal is assured the moment you commit yourself to it."

--Mack R. Douglas

Today Jack had a cardiac sonogram and a chest xray (that was to check whether his cold was the beginning of pneumonia) and got the okay to start.

He was taken back a little today at the prospect of starting so soon but that is why we are here - just not a fun prospect on any front. (I dropped off 9 prescriptions at the pharmacy) He just needs to focus on why we are doing all of this.

Here is our schedule:

Tomorrow (1/10) - We have to be at the hospital at 7 AM for catheter placement. This line will be smaller than the one he had last time since he does not have to collect stem cells. They confirmed that his are there and are in good shape.

1/14 - 1/15 - chemotherapy which means this weekend we need to get a haircut. Also on the 15th the psychiatrist will meet with him to see if he has a proper attitude to go thru the process (seems to me that is too late - we are already committed by that point?)

1/17 - He gets his stems cells back .

1/18 - 2/8 - He gets growth factors and antibiotics every day until blood counts return to normal.

Tentative departure to home in one to three weeks from there - depends where counts are and if we can avoid any surprises.

We have arrived and unpacked

It seems like we have spent the better part of the last 4 months packing, moving,unpacking, etc. Can't understand why Stuart enjoys it so??

Mailing address is : 221 Massachusetts Ave -Apt 609 Boston , MA 02116

Phone number at the apartment is 617-247-2174.

We have gone thru mourning and have accepted the loss - if only the game was a little bit longer. . .

(Congratulations are in order for Dad,Marek, Trevor and Jordan .)

Our future plans to date are a pulmonary function test that Jack has on Wednesday morning (he has a cold that he needs to get rid of before that) and we planning to correct the wrong that was done last Saturday night this coming Saturday.

GO PATS!!