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!!