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Grandpa Ron's Multiple Myeloma Experience
 2007
 
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Back when we first started our experience...                              And today, 10 years later! (2007)
"These are the moments I know heaven must exist. These are the moments I know all I need is this. I have all I've waited for, and I could not ask for more. I could not ask for more than this time together I could not ask for more than this time with you. Every prayer has been answered. Every dream I have's come true. And right here in this moment is right where I'm meant to be. Here with you here with me. These are the moments I thank God that I'm alive. These are the moments I'll remember all my life. I've got all I've waited for, and I could not ask for more..."  (Edwin McCain)
 

Updated biography- at the bottom of this page.  Ron is undergoing some new therapies, had some surgeries, but is going strong, with the support of his family.  He retired from the Illinois State Tollway in January of 2007 and is enjoying his grandchildren, who are now 11 and 13 years old. 
 

 
  * You can turn the music off or adjust the volume here:
 
This web page is dedicated to Grandpa Ron, who is very special to many people.  His personal experience of having Multiple Myeloma will be described for you.  Also, some beneficial MM related web links are listed at the side of this page to help others to understand more about this Leukemia related cancer.  Thank  you for visiting this special site...
Ron's Family Beginnings Ron was born on April 12, 1941 at Cook County Hospital in Chicago, Illinois.  He was the eldest sibling of a family with three sons and one daughter.  His family lived on the northwest side of Chicago all of his life, but they did spend one year living on a Wisconsin farm in 1954.  Ron spent his sophomore year of high school in that small town of Aniwa, WI.  In 1963, Ron was drafted into the U.S. Army.  He had his basic training at Fort Knox in Kentucky and was then relocated to Fort Sill in Oklahoma for the remainder of his service.  He completed his duties with the army and was released in 1965.  (Ron is pictured at the far left, next to his father.)
Ron's Wife, Children & Grandkids   On April 23, 1966 Ron married his wife Carol.  They had two daughters Cheryl (born in 1968) and Rhonda (born in 1971).  Rhonda has always been "daddy's girl" and extra special to Ron because she was born with Smith Lemli Opitz Syndrome.  She is profoundly mentally handicapped.  It was to him, that she took her first steps when she was almost seven years old.  It was also to her daddy, with his arms held open and with his cheering who Rhonda ran across the finish line to with great excitement- as she won her first gold medal in The Special Olympics.  Ron also walked his older daughter Cheryl down the wedding aisle in 1991, to marry her husband John.  He later became the proud grandpa of Rachael (1994) and Timmy (1996).

 
Ron's Work Experiences For 24 years Ron worked as a Damage & Claim Prevention Manager for The Milwaukee Railroad which later became The Soo Line Railroad from 1965 until 1989.  In 1992 he became an employee with the state of Illinois and he remains in that position to the present time.
The Shock Of Multiple Myeloma  Only one month after his grandaughter's 3rd birthday in July of 1997, as Ron was 56 years of age, Ron was diagnosed with a Leukemia-related cancer called Multiple Myeloma.  His family's whole world was turned upside down.  Nobody in his family had ever experienced a Leukemia related illness.  Ron had never smoked, rarely consumed alcoholic beverages, exercised and he maintained a healthy diet and then...BOOM!  He had Multiple Myeloma.  Prior to his diagnosis, Ron had been feeling tired all the time, to the point of exhaustion.  He would lay around and feel the need to sleep.  Ron was having some nausea spells and was having a poor memory.  His wife would become frustrated with these things and was also worried.  Ron's family doctor ran test after test.  Finally, after some elaborate blood work, it was discovered that Ron was dangerously Anemic.  

 
Ron Is Admitted To The Hospital Ron was admitted to Lutheran General Hospital in Park Ridge, Illinois in July of 1997.  It was one thing after another.  He was in renal failure and his kidneys were shut down.  A Kidney Specialist was called in.  Ron's hemoglobin was dangerously low.  His body was eliminating red cells faster than his body was making them.  His white counts were crazily high.  An Oncologist/Hematologist was called in.  A bone marrow biopsy was done.  "Ron has Multiple Myeloma and in Ron's case, he has Myeloma Kidney- also recognized a Light Chain M.M."  His oncologist began high dose chemotherapy immediately.  Ron received high doses of Cytoxan.  In conjunction with the chemo hewould receive a total of 9 Plasma Pheresis treatments to help remove the Bence Jones Proteins that had encompassed his kidneys to restrict them from functioning.  He received Epogen injections to improve his counts and his kidney functioning.  These treatments would all continue on until the end of October.  Ron also got into the new routine of drinking 8 to 10 oz. of water based fluids/day to help flush out bad proteins from his kidneys and to keep them in good functioning.  Catheters were surgically inserted for these procedures to be done.  One, a "port line catheter,"   for chemo and a "double line, or vascath catheter" for the Plasma Pheresis.  Ron received Vitamin B-12 injections once a month too.

 
Compazine and sometimes Zofran were wondrous anti-nausea medications.  After 14 days of that first July visit, Ron was released from the hospital and he continued to received the 9 Plasma Pheresis sessions as an outpatient.  Every 3 weeks, Ron would have chemotherapy of different types.  Neupogen injections were administered to help boost his red cells.  He orally took Dexamehtasone.  Ron developed symptomatic Diabetes as a result of being on this oral med, but he managed his blood sugar levels through insulin injections that he was taught to use.  Ron was on a list of meds that his wife helped to create a schedule for.  Some were taken once/day, and some twice or three times/day!  Cipro, Pepcid, Cardura, Lopressor, Diflucan, Niferex, Dexamethasone, Reglan, and Zofran.  The commonly known VAD Regimen for treating Multiple Myeloma began...
Time For The Stem Cell Transplant Hurray!  Ron's kidneys were at 85% functioning!  He was a good candidate for a Bone Marrow Transplant.  His M.M. had been managed agressively and early.  He survived all the chemos with great effort.  His hair was thinning but his moustache still hung-on.  (Can you believe that?)  He was puffy from his oral steroids, but in great spirits.  It was time to get on the roller-coaster for the ride of having a BMT.  Ron and his family had to make some difficult decisions about which type of a BMT to go with.  An Allogenic Bone Marrow Transplant was an option because two of his siblings were a perfect match.  But, due to Ron's prior kidney damage, using a donor's marrow might cause related complications.  Graft Vs. Host would be a definate probability.  Ron and his family had decided that an Autologous BMT would be the best way to go.  Ron would have a Peripheral Tandem Stem Cell Transplant.

 
On December 17, 1997 Ron began high dose chemotherapy of Cytoxan for an 8 hour session to help cleanse his bone marrow as best as could be before the BMT.  He received Neupogen injections every day for one week prior to the chemo, to help prepare his stem cells for collection. On December 29th he went through an Apheresis procedure and had his stem cells collected.  With that, a CD34 procedure was used to help pinpoint mother Myeloma  cells and to remove them once collected.  A typical collection takes up to 5 days, but amazingly Ron had produced so many stem cells for his collection that his oncologist was amazed to find that only one day was necessary.  Ron had generated enough in one day's collection for the entire Tandem PSCT!  Ron would now go on to have his pre-transplant tests, that checked out the areas of his dental, heart, lungs, bone and blood.

 
On January 5, 1998 Ron was admitted back to Lutheran General Hospital and received more high doses of chemo- Alkeran along with Decadron.  His room was decorated with posters, family pictures and funny computer-created signs from his family.  On January 7, 1998 Ron received  the first part of his Tandem Stem Cell Transplant as his bag of stem cells were reinfused.  Ron received his brand new immune system on that day because of this.  All the effort, months of preparation and momentum... all coming down to one little bag of yellowish fluid, dripping into his IV for only 4 1/2 minutes.  All of the months of preparation, the insurance battles and all of the mental and physical effort involved.  Wow, 4 1/2 minutes.  After the bag was empty, Ron's nurse, his wife and his older daughter all sang "Happy Birthday" to Ron and the birth of his new immune system.  (Ron became teary-eyed.)
Click here for a visual.
The Roller Coaster Goes Up & Down January 7, 1998 was the day of Ron's PSCT and it was considered as "Day Zero."  Ron would be on a roller coaster ride of fluctuating counts.  You are about to read some excerpts from a personal journal that will describe the personal experiences from Ron's Tandem Peripheral Stem Cell Transplant, as logged by his wife Carol.
W= Whites.  H= Hemoglobin/Red Cells.  P=Platelets.
1/5 (Mon.)  Hospital Admission Day.  High dose chemos of Alkeran and Decadron.  W-7.0, H-10.1, P-156.
1/6 (Tues.) Bad day.  Ron started late yesterday with severe shakes, all due to a drug interaction.  His Vascath may have an infection.  24-72 hours to culture the infection.
1/7 (Wed.)  DAY ZERO,  PSCT Day.  Ron looks pale and anemic.  He's getting weaker and acts spacey from the meds.  At 11:20 a.m. he received his new stem cells.  It took only 4 1/2 minutes to infuse.  His body expired a burnt cream corn odor, which typically occurs when one receives this kind of a BMT.  Ron is vomitting from the chemos still.  W- 3.0, H- 9.1, P- 140.
1/8 (Thurs.)  Day +1.  Counts are dropping more.  Much vomitting.  Kytril and Zofran aren't managing the nausea and Ativan makes Ron like a zombie or he sleeps all day when he's on it.  He's off the IV and needs to drink more to manage his kidneys!  We continue to nudge him awake and tell him to "drink."  Compazine injections and Kytril are helping the nausea temporarily.  Neupogen injections are helping his counts some, though he'll be bottoming-out soon.  W- 28.7, H- 8.9, P- 146.
1/9 (Fri.) Day +2.  Ron's more coherant and off all the Ativan.  Switched to Reglan and Kytril for nausea.  Eating small amounts of food today.  He rides his exercise bike 4X/day since his admission, he's amazing.  No catheter infections, just reactions. W- 22.4, H- 8.6, P- 128.  
1/10 (Sat.) Day +3.  W- 2.5, H- 7.8, P- 95.  Keeping positive-minded.  Ron's daughter Cheryl maintains communication between Grandpa and his grandkids by video camera.  The kids are so happy to see Grandpa doing okay and it perks Grandpa up to see them too!
1/11 (Sun.) Day +4.  Real weak.  Blood transfusion needed, 2 bags.  W- 2.5, H- 7.5, P- 74.
1/12 (Mon.) Day +5. Nasty sores in his mouth and going down his throat.  Burns to eat.  Using Lanacane to swish and gargle with.  W- 0.2, H- 9.5, P- 53.
1/13 (Tues.) Day +6. 101 fever.  Doing more cultures.  W- 0.1, H- 8.8, P- 36.
1/14 (Wed.) Day +7.  Ron has infections in all 3 catheter lines.  Got a Platelet transfusion and also 2 bags of blood.  Not eating, but drinks Resource brand nutirional beverages.  W- 0.1, H- 7.4, P- 11.
1/15 (Thurs.) Day +8.  Still rides his exercise bike 4X/day.  101.5 temp still. Sores going down Ron's entire digestive tract and by  the rectal area.  It's tricky having a new, unprotected immune system.  All of the baceria grows out of control.  On several antibiotics.  This is all normal.  Ron is encouraged to wear his protective mask and continues to take walks around his hospital floor to exercise and enjoy the sitting area.  He goes to the refridgerator and kitchenette area for snacks.  W- 0.2, H- 9.3, P- 23.
1/16 (Fri.) Day +9. Some nose bleeds due to low platelets.  Platelet transfusion, 1 bag.  Diarrhea for a few days now.  W- 0.2, H- 8.7, P- 19.
1/17 (Sat.) Day +10. The infection is isolated and he's on the specific antibiotic to knock it out.  Eating mushy foods.  Hurting throat sores.  W- 0.5, H- 7.4, P- 11.
1/18 (Sun.) Day +11. 3 bags of blood, 1 of Platelets.  W- 0.9, H- 7.4, P- 11.
1/19 (Mon.)  Day +12.  ENGRAFTMENT of bone marrow begins.  Ron's whites will double and triple with each day now.  "Hello new immune system- it's about time!"  This was a good day.  His infection is almost gone and Ron has more energy.  W- 2.5, H- 9.3, P- 23.
1/20 (Tues.) Day +13.  1 bag of Platelets.  Tired.  RON COMES HOME!  Valtrex is added to Ron's list of meds.  Ron went down to the basement to ride his exercise bike.  Ron is on 12 kinds of meds!  Keeping the schedule straight now.
1/21 (Wed.) Day +14.  Went to the oncologist.  Great counts!  W- 11.0, H- 10.2, P- 34.  Still receiving catheter care and neupogen shots.  
1/22 (Thurs.) Day +15.  Again, to the oncologist.  No counts today.  Ron is crabby!
1/23 (Fri.) Day +16. 2 days off the neupogen shots.  HIs whites will have to work all on their own for his new immune system.  Eating small meals and going down to the basement 3X/day to ride his exercise bike.  W- 5.4, H- 10.6, P- 37.
1/24 & 1/25 (Sat. & Sun.) Days +17 and +18. Ron is bored at home.  January in Chicago, and having cabin fever.  Going to the oncologist Monday.
1/26 (Mon.) Day +19. Still wearing the surgical duck mask.  Everyone is rigid with the continued hand washing as we've been since the first diagnosis.  Using bleach and alcohol to keep the house extra clean.  
1/28 (Wed.) Day +21.  Again to the oncologist.  W- 5.6, H- 11.0, P- 61.
1/30 (Fri.) Day +23. Oncologist, cath care.  Drinks nutritional shakes between meals.   W- 5.9, H- 11.3, P- 79.
2/2 (Mon.) Day +26.  Has a dry cough.  W- 6.7, H- 11.1, P- 61.
2/4 (Wed.) Day +28.  Yeah!  Ron's oncologist says that Ron is doing terrific. W- 7.5, H- 11.3, P- 103.
2/6 (Fri.) Day +30. Ron will still visit the oncologist 3X/week for catheter care.  In a few weeks they'll do another bone marrow biopsy to check his remission status.  We are very blessed.  *Ron takes Valtrex Post-BMT and will be on this med for 6 months to keep his immune system protected.
2/20 (Fri.) 6 Weeks after the PSCT. W- 7.1, H- 11.0, P- 119.
On To The Tandem Part (Are you nuts?  We're going to do this all over again?)  
3/16 (Tues.) Part 2 of Ron's Stem Cell Transplant. Ron received high dose chemo again this time with Cytoxan and Melphalan at the oncologist's office.  We expect to do this second part of the BMT "at home."  The home care nurse is supposed to come to the house later to set up his Zofran pump and drip.  W- 3.8, H- 11.0, P- 82.
3/11 (Wed.) 2nd day of the high dose  chemo at the oncologist's office.  Ron is spacey and tired but still rides his exercise bike in between everything.  Tomorrow we'll have a day of recovery and the home nurse should come out to check on his Zofran dosages.  
3/13 (Fri.) Day Zero.  Tandem PSCT Day. As an outpatient, a continuation of adding the rest of Ron's stem cells at the oncologist's office.  BUT, Ron had so much nausea from the 2 dyas of high dose chemo and the Zofran was just not managing it.  Ron is dehydrated.  He will be admitted back into the hospital.
3/14 & 3/15 (Sat. & Sun.) Day +1 & Day +2.  Ron's counts are dropping and he's receiving much hydration through the IV.  W- 1.9, H- 9.9, P- 21.
3/16 (Mon.) Day +3. Ron is off the Zofran and is receiving Compazine injections before his meals.  The throat sores are starting again like the first part of this BMT.  W- 0.3, H- 9.8, P- 19.
3/17 (Tues.) Day +4.  Ron's riding his exercise bike 5X/day, eating mushy foods, and managing the mouth and throat sores as his counts continue to bottom out. W- 0.2, H- 9.8, P- 24.
3/18 (Wed.) Day +5. Ron bottoms out.  The diarrhea begins last night and continues.  He received a bag of Platelets.  Hardly eating, but drinking a lot of Resource beverages.  W- 0.1, H- 9.5, P- 14.
3/19 (Thurs.) Day +6. Ron's having a tougher time than the first part of the BMT.  Diarrhea all last night and today again.  He's running a 101.5 temp and he's on precautionary antibiotics.  W- 0.2, H- 8.8, P- 22.
3/20 (Fri.) Day +7.  Ron is so sick.  He's back to vomitting and the diarrhea continues.  His temp is 101.7 and he has an infection.  He received 2 bags of blood and one bag of Platelets.  We hope that tomorrow will be better.  W- 0.1, H- 7.8, P- 11.
3/21 (Sat.) Day +8.  W- 0.1, H- 9.4, P- 14.
3/22 (Sun.) Day +9.  W- 0.3, H- 9.0, P- 26.5.  Ron is receiving neupogen injections this whole time through again.  
3/23 (Mon.) Day +10.  Ahhh...Engraftment.  W- 1.1, H- 9.2, P- 25.
3/24 (Tues.) Day +11.  W- 3.0, H- 9.1, P- 31.
3/25 (Wed.) Day +12.  Ron comes home!  W- 7.4, H- 8.9,  P- 22.
3/26 (Thurs.) Day +13.  W- 16.7, H- 9.3, P- 33.  
4/15/98 Ron had his vascath catheter removed.
5/6/98 RON IS IN COMPLETE REMISSION!
5/27/98 Port-line catheter is removed.
Ron stays on several meds for a few more months.  Valtrex, being the most important one for a duration of three more months.  His counts continue to roller coaster, then stabilize.  Ron had worn the "duck mask" during the times he was neutropenic (or having low white counts.)  But, through it all Ron was amazing and very brave.  He rode his exercise bike and communicated with his grandkids through the video camera and on the phone.
Getting back to normal... what is that, anyway?

 
Look at Ron's chubby belly!  Hair!  Ron began to enjoy going places with his family again.  He got to bathe and swim without having hoses in his chest (as the grandkids would call them.)  He stopped using several of his meds and was only down to two by the end of July, 1998.  Today he takes only one pill/day, Lopressor, to maintain his high blood pressure which is not even related to his M.M.  Ron returned to his job in the beginning of July in 1998 (3 months after his BMT) and continues to work full-time.  He's doing great.  He continues to exercise, ride his exercise bike or mountain bike, takes walks every day, and since his diagnosis (back in July of 1997) he drinks one gallon of fluids each day to keep his kidneys at excellent functioning.  Ron is a very positive guy who always has a smile or a joke.  He is dearly loved by his family and friends.  He remains in complete remission and maintains good cell counts.  Ron says, "Be  positive and follow the program that your doctor gives you.  Take it day by day."

 

  Words From Ron's Wife Carol...  On April 23, 2007, Ron and I celebrated our 41st wedding anniversary.  It seems like a lifetime ago that Ron had his bone marrow transplant.  It was a very difficult period of our lives.  I won't kid, when I say that it was probably more stressful on me than Ron.  Ron is here, doing good and has his cheerful, humorous personality back.  But, it took a lot of coaching on my part during the whole ordeal, to encourage Ron to drink, exercise and to be positive.  There is no cure for Multiple Myeloma yet, but we pray for one to be found soon.  For all of the spouses who are afraid to consider the PSCT option, please don't be afraid.  Our family is another example that this is a  method of treatment that works.  We have also learned to appreciate each other even more and to take every day one day at a time, positively.  Good Luck to everyone.

 
 
Happy 66th Birthday To Ron!  April 12, 2007

 
Please make a link to our website with this logo:  
http://members.tripod.com/bettyboxer/id27.htm
We'd love to help others in learning more about Multiple Myeloma.

 
 By Cheryl, Ron's daughter and #1 Fan!
Feel free to e-mail me with any of your questions or comments  

 
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