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Robert Heeren
11.29.03

San Bernardino, CA (From his daughter, Jennifer: jsarrazin@guthy-renker.com)

1942 / Class of 2003 / Type: IgG / Amazing recovery / Last Update: 8/03

Dad’s Story: A story of Hope, a story of Living

In late February 2003 it began with a backache. By late March 2003 the backache had begun to cause so much pain, getting up and down from a sitting position, getting out of bed and playing with the grandchildren, was to difficult to do without assistance. In late April 2003, extreme back, chest and rib pain, significant weight loss (25+ pounds), and a fast growing hump on Dad’s back made the diagnosis of a pulled muscle as a result of chopping wood, unbelievable.

My Dad was only 60 years old at the time and was very healthy and active. He is a nature and history lover spending his free time camping and hiking, reading, watching old history/war movies and listening to the music’s of the world. He had never been ill before… just one time about 25 years ago when he was hospitalized for a “fever of unknown origin”. He had three careers up until this point- the latest as a high school geography teacher, which he loved and gave 200% too even up to the day before he was hospitalized.

It took some major pushing I have to warn, to get his doctor to look at my Dad’s symptoms as anything more than a pulled muscle or possibly a bulging disk. Even after x-rays in late May, the doc said he just had a terrible case of osteoporosis. He had Dad admitted to the hospital over night for testing though, as it had become just too difficult and painful for him to travel- even across town. His breathing had become slightly labored and he had severe constipation that was leaving him bloated beyond any 7-course meal.

After his initial admission for testing, my Dad wasn’t released from the hospital to the rehab center for 8 long weeks. In the course of the 8 weeks, we almost lost Dad to acute pneumonia (due to aspiration after failed attempts to relieve his constipation), a staph infection in his blood, renal failure, a tear in his large intestine and Dad’s body rejecting the mass of tubes that seemed to go into every opening of his body. It was confirmed for us in the first week of his stay in ICU that he had MM and because it had progressed so long without treatment, he was too far-gone to recover. We were asked if we wanted to resuscitate him if/when he stopped breathing again and what were his wishes, did he have a will etc. It was the most devastating experience of my life as well as in the life of my brother and mother and it was all happening just to fast. 2-3 months before he was picking up my nephew and swinging him around in the back yard and making all of the campground reservations for the summer…

I decided to dive in to this disease with everything I had and I began to research, research, research! I asked questions of all the doctor’s caring for my Dad and contacted the local support group in my area. The IMF website became a constant source of information and hope and ever day I made the 3 hour round trip after work to my Dad so I could talk to him and tell him about all of the new medicines and treatments for this cancer. Although he was under a neuromuscular block and wasn’t able to respond, I felt that he could hear me and I didn’t want him to give up.

We were told that Dad was in stage 3 of MM and that he had 2-3 lytic lesions on his spine and chest. The hump on his back was caused by 5 collapsed vertebras in the thoracic area as well as having a bulging disc in the lower back. We weren’t given much hope in the way of getting him through this to receive treatment for MM as the doctors felt his test results showed the disease had progressed beyond any significant help that treatment could provide. Dad has IgG and the chromosome 13 deletion was made both of which gave me more hope and after 2-4 day cycles of Dexamethasone, his IgG level had gone from an 8 at admitting, to a 4. His white blood cell count which had remained at a fairly constant 7-8,000 at the peak of his sickness, was responding to a couple of minor infection he had picked up in the hospital (rising to 18,000 at one point). His red blood cell count went up to 12,000 on its own after 5 previous blood transfusions failed to bring it above 9,500.

8 weeks after being admitted to ICU, Dad was healthy enough to be sent to a rehabilitation/health care facility with only a feeding tube. Once at rehab, there was a week that was pretty bumpy that left him with aspirated pneumonia… again (it was caught much quicker this time and therefore wasn’t as severe). He was exhausted and slept all of the time and was nothing but skin and bones. His normally healthy 6’2, 200 pound frame had been broken down to a 5’8, 131 pound frame but the kids that he had taught the year before, the teachers he worked with, neighbors, numerous life-long friends and our huge family, gathered around him daily, filled his room with posters and cards, prayed for him and with him and fed him the hope of life-living-with MM.

My Dad has been in the rehab/health care facility for 3 weeks now. He gained 10 pounds in the first 2 weeks of being there and he has started his second round of Dexamethasone treatments. The oncologist has skipped giving him Aredia this month as his calcium level is to low to warrant it. Currently his blood tests are coming back “within normal limits” and although he still has a feeding tube that has made him unable to take thalidomide yet, he is still working hard on reaching that goal. The stoma is almost closed now and he is able to exercise his throat more effectively which we hope will allow his epiglottis to work properly again.

The rehab and Dad’s doctor’s had planned on him being in rehab for approximately 2 months and then going home as an invalid basically but 3 weeks after arriving there, he is no longer eligible for skilled care nursing because he has regained the ability/ strength to do everything on his own again! He walks, dresses, bathes, uses the restroom, and gets in/out of the car-- all without assistance! He doesn’t sleep near as much anymore either and has order his books for the fall school year (yes, he plans on teaching in Sept.).

Dad and I have faith that he will win this battle and battles that will come in the future- I’m sure there will be many- and that with each battle, he will become stronger and that there will someday be a cure for MM. (“For when your faith is tested, your endurance has a chance to grow.” James 1:3 NIV) As numerous doctors have told us, Dad is a walking MIRACLE and he is proof that there is hope in the Myeloma battle front lines.

Until I write in again to give you all an update on my Dad’s health, if you are a Myeloma patient or are family of a Myeloma patient, I hope this story gives you renewed hope in what you are going through.

All my best, Jennifer


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