September 25, 2006
I am sorry it has taken this long to send something out to everyone who has sent messages of prayers and support. You have all heard bits and pieces but I thought I would recap what has happened probably more for my sake than yours! I can't possibly include everything but I think this should let you know what has happened so far and what the future appears to hold.Marie and I are into the 57th day of 24/7 care giving and the doctors have indicated it is one reason she has been able to keep going. It is hard to believe that much time has passed but it has.Tricia entered the hospital in NY on July 14 and on July 17 found out her leukemia had relapsed. Marie had flown to NY on July 14 as soon as possible after Trish called us.
They returned to Calgary together on July 19. We went directly to the Cancer Clinic and they put Trish through tests which showed her leukemic cell content was 90 percent. The doctors then told us that a third bone marrow transplant would not work, that they would not be able to beat the disease and that there were two courses of action to take. One, to enjoy the balance of time she had left by extending it as long as possible with transfusions of blood products. This way she would not go through the hell that chemo creates. This choice would likely result in a life expectancy of a few months but in relative comfort. The other choice was to hit it hard with two sessions of chemo (about three weeks each) and then, if that got her to remission (where her leukemic cell count would be very low yet still there), go into a third 'maintenance' phase that would be continuous and could extend her life to a few years instead of a few months, again in relative comfort. The problem with the second choice was that she could go through the first two phases of chemo and all the torture and still not be in remission.
Tricia was not ready to give up and chose to fight again. The next day they put a central line into her chest and began chemo. Within days the chemo began to kill off her cells. By July 29 her counts were almost non existent and she was immune suppressed. They removed a couple of stitches from the central line incision and on July 30 a small black mark appeared at the incision. Her blood pressure dropped to a critical level and they called a Code 66 to her room. Within minutes a team of about 12 arrived from the Critical Care Center and an hour later she was admitted to the ICU. There they discovered the infection had grown rapidly and was a type of flesh eating disease. She had no immune system and required surgery immediately or the infection would have spread through her body within hours. When Tricia returned from surgery she was on life support with both breathing and feeding tubes in her throat, a catheter in and a wound the size of my hand that extended from just belowher adams apple down about 5 inches and 8 inches across.
Everthing had been removed including her front neck muscles and it was at least an inch deep. I remember after seeing it for the first time I cried on and off for about three hours. The problem she faced at that point was that she had no white cell count and therefore no neutrophils. They can give transfusions of red cells and platelets but not white cells. White cells come in five different types, two of which are neutrophils and lymphocytes. The neutrophils are required by the body to fight off infections. The chemo was stopped and she was given a growth hormone to see if her marrow would create some white cells in order to recover from the surgery and help in fighting any reoccurrence of the infection or others that may arise. The growth hormone was to counter the effect of the chemo so fighting the Leukemia was put on the shelf.Simply put, when you have the type of Leukemia Tricia has (Acute Lymphocytic Leukemia - ALL) the bone marrow creates lymphocytes that don't mature and therefore do not get used up in living. If untreated, the immature lymphocytes would fill the bone marrow leaving no room for good cells. Unfortunately they cannot isolate and kill the immature cells only so the chemo kills all the cells and they hope the bone marrow then creates good cells. The chemo Trish received had done its job and that is why she was immune suppressed when the infection occurred.
July 30 was a Sunday and by the following Friday Trish had developed two types of cold viruses and pneumonia. One of the ICU doctors met with Marie and me and told us that Trish was not likely to survive her stay in ICU and if she did they would be unable to continue the chemo treatments due to her condition and at best she could survive a few months. We were devastated and the next day I tracked down Tricia's Oncologist to hear it from him. His name is Dr Chaudry and he has treated Tricia since she was first diagnosed. I related the synopsis given to us in ICU and asked his opinion. He said that the basic summary was realistic however Tricia's white cell count had risen slightly overnight and they had not expected any increase for about two weeks. He said he would not want to predict the future but if the white cells continued to increase, anything was possible and he said if he was being objective he would likely agree with the ICU doctor, however, he knew Tricia well and said it was difficult for him to be objective when it involved her. He believed that anything was possible and only time would tell.
He cautioned that if she was to get off of life support and return to the Cancer Clinic that he would need to do a bone marrow biopsy to see what state the leukemia was in before any decision could be made on continuing chemo. She was only half way through the first phase and there would be a lot of hell still to go through. He said before they transferred her back to the Clinic we needed to decide whether or not they should revive her if need be. He gave his opinion that it would not be fair to her to put her through more of what she was going through because if that happened there would not be much chance that they would be able to treat her again and that the balance of her time would be spent more or less in the state she was in then. We agreed with him and after they explained it to Tricia she signed the necessary papers. We were not sure she understood the implications of it all but we had to accept it.
Over the next week Tricia's white cell count continued to rise and she began breathing on her own. On Friday Aug 11, Dr Chaudry left for three weeks holidays. On Saturday ICU removed the breathing tube and on Sunday the 12th sent her back to the Cancer Clinic. Since then we have been on an incredible roller coaster ride. The first week her counts rose ever so slightly and the pneumonia and viruses did not improve much. Then her white cell count began to rise more rapidly and they took a bone marrow biopsy. Dr Geddes was the Oncologist covering for Dr Chaudry while he was away and she was amazing, visiting daily and keeping a close eye on Tricia. Tricia seemed to be doing better and one day Dr Geddes came in with the results of the biopsy - she was in remission with a leukemic cell count of 3 percent! Also, the infections were improving. Most importantly, the infections needed to improve to the point where a graft could be used to cover the wound and some decisions could be made on where to go with the leukemia treatment.
Due to Tricia's condition it was likely the skin bank would be used for a temporary graft until she was well enough to supply her own. Then came a visit from the doctors from Infectious Diseases who first identified the infection. They felt that the original infection may have entered her sternum and if so they would need to switch her antibiotics. The new treatment would be tried for a couple of weeks and if it did not work they would need to operate to scrape the interior of the sternum. They wanted her to go for a CT scan to confirm their suspicions. That was on Aug 27th, my birthday. Apparently, if the infection enters the bone it likely becomes a chronic problem that would return basically when it felt like it and given Tricia's condition even if the leukemia was treatable any return of the infection would likely be disastrous. The next day she went for a CT Scan and a day later we found out the Radiologist did not necessarily agree with the suspicions of the ID doctors. The Oncologist informed us that they would do another x-ray and then all the doctors would meet to determine what the consensus was and where to go from there.
They had been trying to get her to a Barium swallow test to see if they could begin feeding her normally and finally remove the feeding tube. She had not had anything to eat or drink since July 30 and we were hoping this could be done. Unfortunately, because of the conflicting opinions, it was put on hold and moved to the following week after the Labour Day weekend once they decided what the situation was. During the next few days they concentrated on getting her to cough up some of the congestion in her chest because they felt it was improving. Physio began coming around twisting her torso and pounding on her back and the coughing spells became more frequent.
Also in that period, Dr Geddes had asked that the catheter be removed and because it had been a month since Tricia had used her bladder we began some fairly restless nights as whichever one of us was with her at night would be awakened about every half hour to put her on the bedpan. We developed a system for her to wake us when she needed to go. She would take the plastic spit tray and bang it against the bed rails until we responded usually running around trying to find the bedpan and get it in as quick as possible. It only took a few days to get used to it and she got quite good at lifting her hips to make the job easier. A few days later she began to get her control back and the time between awakenings increased dramatically.
I forgot to mention that ever since Tricia had returned from ICU she was placed in isolation so we were required to wear gloves and masks at all times and all hospital personnel were also required to wear gowns as well as the masks and gloves. Today, the masks are no longer required but gloves are required for us and gloves and gown are required for hospital personnel.On Saturday, Sept 2, Dr Geddes brought in photocopies of the 2 most recent x-rays that showed dramatic improvement in the amount of congestion in her lungs. She was extremely excited with the improvement and the excitement was infectious. Also, the amount of oxygen that she needed was decreasing and they replaced her oxygen mask with nose prongs which made it easier to understand her and gave her a break from the mask and the noise associated with it. Tony will find it interesting to note that Tricia has been getting a shot of insulin at least once a day and even more often at times. It is needed to counteract the effect of the food that she receives through the feeding tube. Apparently, the mixture is required in order to maintain a proper level of nourishment but it causes a condition that requires the insulin to correct it.
Marie took over on Sunday morning and the day went very well. On Sunday evening Physio came by to get her sitting up and when they did she had what appeared to be a seizure which lasted for about 15 minutes and when she came out of it she was unable to see. Her sight returned in about 30 minutes and things got back to normal. On Monday she and I played a game of Contract Rummy and her game was as good as ever. Then Physio showed up again. This time they got her to stand up and she again went into a similar state but she appeared to quit breathing and they called a 'Code Blue' on her which means Cardiac Arrest and the emergency response team took over. Within minutes there were at least 15 people working on her and it was the scariest time of my life. They had the AED machine with the paddles prepared to go but when they found out it was Tricia they were obviously aware of the agreement made when she left ICU but they stayed with us to see what could be done without the use of CPR or the defibrillator. They allowed me back at her side and I held her head at the back where it was clammy with a cold sweat. She had been taking the odd breath and kept breathing on her own. Within 10 minutes she started coming out of it and when she opened her eyes she said 'I can't see'. I told her to remember the night before and how her sight returned. Then she asked me if she was going to die. I would have cried right there but I needed to keep her going and told her that she was fine; to keep breathing and things would return to normal. Within minutes she said she could see my eyes as if in a tunnel and they bundled her up and took her down for another CT Scan. When she returned she could see again. The CT Scan showed nothing unusual and after a Neurologist came for a visit they began giving her an anti seizure drug which had some serious side effects including slurred speech.
On Tuesday she went for more tests including an echocardiogram from which they decided she had Atrial Fibrillation and they informed us it meant she has an irregular heart beat. It is one reason many of us older folks get a pacemaker put in. That, coupled with the fact that her front neck muscles were removed in the operation that removed the infection, led them to believe the two episodes were not seizures but possibly from passing out due to her head moving quickly back or forward. The blindness was apparently the result of a main nerve in the neck being pinched and the messages from the eyes to the brain being blocked. It's all conjecture or should I say educated guesses but it's all we have at this point. However, because of this new information they took her off the seizure drug which made a big difference. That week she was given an EEG, an ECG and two different MRIs. Unfortunately nothing conclusive has come out of any of these tests. They did, however, attach a Holter monitor to her for a 24 hour period a few days later and it was determined that she did not have Atrial Fibrillaton. Dr Chaudry is still checking different things to try to determine the cause of the incidents.
In the middle of all of this, Dr Chaudry came and told us that even with these recent setbacks that her recovery is still possible and that in the near future, likely Monday the 12th they would give her a Barium swallowing test to try to get her off the feeding tube. In addition, and more importantly, he felt they would move to the maintenance phase of the leukemia treatment to try and get her back to living her life again. Quite a roller coaster. When Dr Chaudry was explaining what the plans were he stated that she had been through a tremendous amount but that he knew she could do it because she'd been through it twice before. Her response was that the previous two journeys had been walks in the park compared to this one.And yet, for the most part, she remains positive and the Drs and nurses are amazed at her determination and strength. Only once has she looked at me and said 'I can't do this anymore' but she knew herself that she didn't mean it.
On the Friday after all these tests, that would be Sept 8, Dr Chaudry informed us that they had decided to move forward with the surgery to cover the wound in her chest. Her blood counts had recovered dramatically and were more than enough to allow them to operate. They originally felt they would need to do it in two stages - first to cover it with skin from the skin bank and then weeks or months later to permanently cover it with her own skin. The doctors felt she had recovered sufficiently to allow them to skip the skin bank step and they harvested skin from her right thigh and covered the wound permanently. When I first saw her after the operation I had an extremely difficult time keeping myself from crying, my heart just ached. But, she was excited that things had started to get done and I didn't want to throw any negative vibes into it but now she has two large wounds to heal. Also, they needed to leave an opening about an inch and a half around because there is a fairly deep part of the wound that has to heal from the inside out and must be left open to do so. They say that plastics operations always appear much worse than they are but piled on top of the rest of the challenges she has faced it is almost unbearable.
The wound is treated daily and has improved dramatically since the operation but it has a long way to go to start looking normal again.After she got back from the skin graft operation the method we had developed which allowed her to use the bedpan was no longer possible. She was unable to move her right leg and on one of the first occasions where I was helping her get on the bedpan she was trying to lift herself with one leg instead of two and she tore a muscle in the left side of her back. It caused her severe pain for the first week after and the pain is still there today although it seems to have begun to heal. Since she could not sit up for five days after the operation the swallowing test was postponed again.
Tricia could not move much in the first five days after the operation and she has been on a morphine drip to control the pain. She also receives medication at night to help her sleep so we have been able to get more sleep. She wakes up to use the bedpan 2 or 3 times a night and the nurse comes in at least twice to administer Trish her meds and occasionally the IV pumps start beeping and we need to call the nurse in on those occasions as well. All in all though it is much much better.The skin has grafted well and they removed all the staples on Tuesday this last week. The graft wound on her thigh is healing well and is no longer as painful as right after the operation. I think a lot of the leg pain was caused by the staples pulling whenever she moved it. Physio was in on Wednesday and Trish stood twice for the first time for about 20 seconds each time. She has begun a series of exercises to get her muscles active again.
On Thursday Physio again returned and brought along a walker. It took about fifteen minutes in total but she walked to the washroom in her room and sat down on the toilet for the first time in seven and a half weeks. I called Marie and told her about it and she started to cry. Then Friday tonight Marie phoned and told me Physio got Tricia got up with her walker and walked out into the hallway then into a wheelchair and she moved down the hall, first by pulling it along with her feet, then moving the wheels with her hands. It doesn't seem like much but each of these accomplishments is massive and vital to her recovery. On Saturday she took her walker from her room to the nurse’s station which is about 50 feet and then the wheelchair around the ward and back to her room. We stopped by the lounge area at the end of the hall and watched a little of the Ryder Cup. It is truly amazing. Six weeks ago the Critical Care Center doctor gave her a few weeks at best and now we are talking about when she can go home. That may be premature but a big part of the battle is the expectation of recovery.
One setback was the barium swallow test on Monday. Although she swallowed each item without incident, they feel the possibility of something going down the wrong tube is still too likely and that would be a disaster at this point so they are leaving the feeding tube in. That's the first time since July 30 she has had anything to eat or drink even though the thickest thing was applesauce. And the people on Fear Factor think they have it bad! Ha!
One night Dr Chaudry and I were talking about all the things that she has faced this time around and he explained that Leukemia is not a disease that allows for a standard treatment to be applied. There are also many different things that happen with the body when it faces the disease and the drugs used in the treatment. He said each time something new happens with a patient the entire team meets, discusses their options and then makes an educated guess as to what their plan of attack will be. He then said that most people do not present as many challenges to them that Tricia has this time. He paused for a few seconds and then said 'Yeah, she keeps us dancing!'
So. Where do we go from here? God only knows. We've learned to stay reserved in our expectations and celebrations. We allow the excitement of the minute to help us move to the next challenge and yet we know there will be another challenge coming. We can only hope that those challenges will be overcome like the ones that are behind us and the ones we are currently dealing with.Again, thanks for the prayers and best wishes. It is comforting to know there are a lot of people pulling for her right now.
