The Highest Hurdle
Page 12
A Glimpse of Heaven in Northern Michigan!
Journal entry by MaryFran Kolp — 8/11/2016
I was humbled and very grateful for all the teenagers of the Petoskey Steel Drum Band, the instructors Mr. Bennett and Mr. Ryan and a special thanks to Mr. Harvey for MC’ing this event. You all haven’t only built a spectacular band program but have been instrumental in the development of numerous young teens into leaders and strong contributors to society! Amazing program! Thanks to all of the donors, the Angels that helped with the event, especially Deanna Beaudoin who stepped up to be in charge in the last hours, and Robin Bennett who from a conversation in La Dolce Vita, our local amazing salon…she said she’s doing a fund-raiser for our cause…and made it happen. It was a very successful event both spirituality and financially. Even our kids had friends present. Megan’s teammates from travel volleyball in Midland came to the event to surprise and support her! Financially close to $35,000 was raised and McLaren Northern Michigan Foundation picked up our flights! That’s crazy money and support. Awesome community! Seriously no words to summarize the feelings or gratitude. While many of you know my supplements, alternative treatments aren’t covered by insurance. This stem cell treatment truly would have financially put Andy over the edge! But God provides and many of you were his angels doing his work for me, and hopefully many others to come. I pray this stem cell treatment has a positive effect! My intention is to write a book entitled “Divine Interventions” or “Restarting your Nervous System.” Time will tell! We will see. Andy and I are departing in an hour. I report at noon at the clinic tomorrow! I will keep you posted through this blog. Extra prayers welcome! Thank you everyone for everything! Make it a great day!!!
Stem cells extracted and starting to process
Journal entry by MaryFran Kolp — 8/23/2016
A special thank you to our friends and hosts, Bob and Trudy Hogan! They have a beautiful over the top home and are allowing us to stay during this process. We are so blessed, they live 20 minutes from the clinic! After a physical day one and some supportive IV’s, day 2 brought a bone marrow extraction from my hip. Extracting 7 “turkey baster full” (60ml), 300ml of bone marrow, containing stem cells. 4 immediately infused in me via IV. 2 are being treated with umbilical cord blood (not embryonic) containing growth factors and stem cells that will be nurtured and injected into specific areas in my spine over the week, predominantly the neck area. I also will continue Infrared treatments, hypoxia therapy, shots and hyperbaric to increase stem cell proliferation. Everyone is very kind! Wanted to give an update! I feel your prayers! Sorry this is short but I’m exhausted! Love you all!
Beginning of week 2
Journal entry by MaryFran Kolp — 8/29/2016
If anyone gets a chance, please wish Megan a happy 15th birthday today! Well, we’ve begun week 2 of our stem cell treatments! I had another 300 mL of stem cells and bone marrow extracted this time from my right hip. I am exhausted but feel as if progress is being made so I will continue on the journey. I have more infrared light treatments, hyperbaric treatments, shots, and pokes and resubmission of stem cells to look forward to in this upcoming week. I am starting to look forward to coming home as I really miss my kids. Just thinking about them gets me through! Andy has been amazing and a real trooper as I have not been the best of patients! In between all of the pokes and prods we have had some quick little exploration trips investigating Dana Point, Laguna Hills, and Newport Beach. This is a very beautiful area and we are blessed to be here. I thank you for your continued prayers! They are heartfelt and carrying me through this process. In turn, I have had a lot of downtime and have spent a lot of time praying for each of you; especially those that have commented via text, email or on this Caring Bridge blog!
Home and healing!
Journal entry by MaryFran Kolp — 9/7/2016
As many of you can imagine life has been a whirlwind these past two weeks! It’s good to be home, see the kids and get them prepared for another school year. We are so grateful for all of the help and assistance while we were away thank-you to our parents and to Sarah for staying with the kids! Friends, thanks for the food and Gina the blueberry bunt cake! Our experience at Dr. Steenblock’s Clinic was very interesting! He has an excellent staff! Hopefully within 3 to 5 weeks we will start seeing some changes from the stem cells that have been cared for and put back into my system. So sorry for the delay in updating this blog, however after my spinal tap I once again had a headache and have been recuperating from that. I’ll let you know when I’m ready to have guests! I look forward to filling all of you in on the details of my experience once I’m feeling a little better. Keep the prayers coming! I hope all is well with you and your family! Will look forward to talking soon!
I’m almost back on the grid!
Journal entry by MaryFran Kolp — 9/12/2016
This journey of getting stem cells has been quite an adventure to say the least. I’m back on the grid! If you, and your household, are healthy come on over! I need to try to remain healthy to allow my stem cells to grow most effectively and efficiently! I’ve missed all of you, but really needed the rest and alone time. Marie kindly created great signs for outside our front door and the garage so if dropping by you’ll know if we’re up for guests. Thanks Marie! I’m working on sharing some pictures of my experience in California, but my fingers have slowed so I don’t text as fast! I wanted to wish my Dad, Dan Peterlin a happy birthday!!! He is the best Dad ever! He was so into us kids, we’re so blessed! He would even come watch our games and then have to go back to work after! What Dad does that? We love you Dad!
Infrared therapy
Journal entry by MaryFran Kolp — 9/29/2016
Infrared light therapy stimulates stem cells. The socks on my feet also offered gentle pulses that also may stimulate stem cell growth. I also had an oxygen mask on to control my saturation levels to stimulate again stem cells. I would lay there daily for an hour during my two weeks in California at the clinic.
October update
Journal entry by MaryFran Kolp — 10/10/2016
The Kolp kids are doing great! Danny’s physical therapy for his knee is progressing nicely as expected and we hope to have him back at basketball by Christmas break. He just finished an official visit to Central Michigan University watching the basketball team practice and the football game and a volleyball match! Great experience! Looking to visit the University of Toledo and Loyola and DePaul Universities soon. Megan has been doing a phenomenal job in volleyball. She is in the local newspaper weekly. It’s exciting to see her coming into her own. Unfortunately, in gym class she sprained her foot and was out of commission for a couple of weeks. She will be back for districts this weekend. Andy is doing well he’s actually back to work now working about 5 shifts a month at McLaren at this point. Andy went bowhunting for a couple of days downstate with his buddy Randy. A well-deserved break! As for me I feel a little more rested since treatments in California but not much. The progression of muscle weakness has persisted. My arms don’t work really well nor do my hands, but I still remain positive and grateful. Daily I’m reminded of the prayers and support we have. Seriously, I have so many great friends surrounding me in my home and at games! I envision this being like a glimpse of Heaven. Julie, Kim, Lynn, Maggie, Pam, Pat, Lanette and Gina all around me while watching my baby girl play volleyball! Total Heaven here on earth for me! Remember to celebrate every day! It’s becoming harder and harder to type but I will do this blog as long as I can. It just may take me a little longer than previously. Because I don’t write anymore those of you suffering I would have sent cards but since I am unable to do so just know that you are in our thoughts and prayers. I know many of you reading this have struggles of your own. My card to you is please look up on YouTube the song by Casting Crowns “Just be held”. I think of you Rose Heiler, Gail Meloche, Brenda Meloche, Jerry Weurding, Bob and Doris Baker, Paula Chilcote, Jeff Cech, Elliot, Klimas, and Lukas families!! Those of us suffering I asked but you
offered up your discomfort to some of my fellow ALS friends: Ken Miller who is presently receiving a similar treatment that I did at the same location in California. Also, if you can pray for Tammy Pawlowski and Amy Janisse! I love you all!
Senior class photo, class of 1985
Their wedding day
Andy and MaryFran
MaryFran and Andy
St. Francis Xavier School
St. Francis Xavier Church
Some early members of the Organic Cooking Club—Maggie Kromm, Melinda Eaton, Shelly Budnik, Deb Gagnon, Jen Waldvogel, Val Meyerson, Julie Adams, MaryFran Kolp, and Marie Law
Celebrating MaryFran’s birthday a day early—and a day before her devastating diagnosis; in the picture are MaryFran’s sister Natalie Reed, her mother Carole Peterlin, MaryFran, Lynn Rawson, Melody Collins, Julie Izzard, Kathy Coveyou, and Lanette Hoffman.
Natalie Peterlin Reed, Carole Peterlin, and MaryFran Peterlin Kolp
Kim Wroblewski, Deanna Beaudoin, and MaryFran at Deanna’s home. It was about a month after her diagnosis. We met for lunch and Deanna wanted to tell Fran about a book she found about care groups. Little did we know how this meeting would change our lives forever.
The Collins and Kolp families have been close friends since they met in Lamaze class pregnant with the boys. Front row: Danny Kolp, Hunter Collins, Jeff Collins, Melody Collins, MaryFran, Megan Kolp. Back row: Andy Kolp and Kira Collins.
MaryFran chairing the school auction.
St. Francis Gala Auction fun! Some years we had themes. Above, the theme was Kentucky Derby. Left to right are Maggie and Jason Kromm, Jeff and Melody Collins, and Andy and MaryFran Kolp.
Left to right: Marie Law, Lanette Hoffman, Kim Scholl, MaryFran, Kathy Coveyou, Jennifer Buck, Vanessa Ceniza, Beth Burke, and Julie Izzard
Dan Peterlin, MaryFran, and Carole Peterlin, Christmas 2014
Spring Fling 2017, St. Francis Auction; seated: Kim Wroblewski, Deanna Beaudoin; back row: Lisa Pulaski, Lanette Hoffman, MaryFran Kolp, and Lynn Rawson
Andy, Megan, Danny, and MaryFran about a year after MaryFran’s diagnosis
Terri Kolp Reynolds, the best sister-in-law/friend!
We were celebrating Marie, MaryFran, and Kim’s fiftieth birthdays. Pictured on first row, left to right, are Maggie Kromm, Marie Law, MaryFran Kolp, Kim Wroblewski; back row are Cheryl Eberhart, Terri Reynolds, Julie Izzard, Tina Wilder, Joelle Wilcox, Jen Waldvogel, Ann Carolan, and Kim Scholl.
Cheryl Eberhart, MaryFran Kolp, and Jen Waldvogel; Cheryl and Jen were indispensable, along with Terri Reynolds, for bathing MaryFran. They came almost every Tuesday and Thursday for months.
Andy and MaryFran attending a basketball game.
Danny Kolp
Megan Kolp
Kim Wroblewski, MaryFran and Lisa Pulaski on our last pontoon boat trip
Lisa Pulaski, Deanna Beaudoin, Jennifer Waldvogel and Kim Scholl
Kim Wroblewski, MaryFran and Deanna Beaudoin at the Strike-Out ALS fund-raiser. It was the first event of several to help raise money to offset treatment costs.
Robin Bennett and MaryFran at the Petoskey Steel Drum fund-raiser.
Robin is married to one of the band directors and a friend of MaryFran.
She was the driving force behind this event.
PART 3
This was the last journal entry that MaryFran was able to do herself. Her voice was getting very weak, so it was difficult for her to voice-text, and she had lost the use of her arms and fingers. I did not know we were going to write this book and regret not starting a journal earlier. The next entries were from her mother’s notes interspersed with my own journal entries, which I started in January 2018 every time I visited.
August 14, 2017
MaryFran was prescribed baclofen 10 mg tab, half tab p.o. TID 30 days.
August 26, 2017
MaryFran is consulting with Dr. Velugubanti of Integrative Neurology, PLLC. He has prescribed for her olive leaf extract 1,000 mg for chronic infections. Activated charcoal 560 mg 3× daily 2 hours away from meals, supplements, probiotics, antibiotics, NA-C antivirals. Activated charcoal is for 14 days. Biocidin 5 drops 3× daily for 8 weeks. Interphase plus once daily for 2 months. Then stop supplementation of what is listed above olive leaf and Biocidin and redraw labs five days thereafter, then once labs are obtained then restart supplementation. 5-HTP 100 mg 3× daily.
It was around this time when she finally agreed to a wheelchair. She was still able to walk with someone holding her from behind. The problem was her head and neck muscles were now so weak that she could barely hold her head up. She still remained positive and attended Mass. She always thought that if she could walk, there was still hope.
November 27, 2017
Dr. Velugubanti prescribed Feosol 325 mg 1 tablet BID, Biocidin 5 drops p.o. TID 1 oz/30 ml, Turmeric with black pepper 1 capsule p.o. BID, and olive leaf extract p.o. TID.
November 28, 2017
Carole sent an email to Aarti to let her know that MaryFran has claimed that some of the supplements are making her nauseous. This is causing her to have a loss of appetite and less consumption of food and liquid. They began experimenting with reducing or eliminating each supplement that was determined to cause nausea. Her appetite increased significantly, as also liquid consumption. Testing with a pendulum was used to determine the following.
Supplements testing as needed but causing nausea:
Brain cell support
Acetyl L Carnitine
CoQ10 reduced to one 1× a day
Magnesium reduced to one 1× a day
Ascorbic acid reduced to half scoop 1× a day
NAC
Previously reduced evening primrose ½ tsp 3× a day
Phospotidal choline ½ tsp 3× a day
Supplements testing as not needed and cause nausea:
Berberine plus
NADH
Supplements testing as not needed (but do not cause nausea):
5HTP
Interphase Plus
Saccharomyces boulardii
All other supplements have tested as needed and as not causing nausea.
We will share details and specifics at the Skype conference on Thursday.
Were you forwarded the results of her follow-up blood work on October 13? We will also share information from yesterday’s follow-up meeting with Dr. V’s staff physician, Srilatha Thadur, M.D. the photos of the prescriptions are attached.
Thanks ahead of time for all that you do.
Carole
December 1, 2017
MaryFran was taking the following vitamins and supplements:
Arabinogalactan Powder ½ tsp. 2× a day
Tru Bifido 1 capsule
B complex 1 capsule 2× a day
Vitamin D 1 capsule
Magnesium 2 capsules 2× a day
Acetyl L Carnitine 1 capsule
Arthdygestzyme 2 capsule 3× a day
Butyrate 2 capsules a day
Brain cell support 1 capsule 2× a day
Ultra-Pure McTail
Barbering Plus 1 capsule 2× a day
Enada NADH-5 1 capsule 2× a day
Vitamin C powder 1 scoop 2× a day
Lipothiamine 1 capsule 2× a day
CoQ10 1 capsule 2× a day
Lipoid Acid 1 capsule 2× a day
LDA Trace Mineral Complex 1 capsule
Glycine Sticks 1 a day
Evening Primrose 1 tsp 3× a day (for menopause)
Phospatidyl Choline 1 tsp 3× a day
Lithium Orotate 1 capsule 1× a day first week, then 1 capsule 2× a day 5 weeks
Neurological Mag 2 capsules 2× a day
Rhodiola Rosea 1 capsule 2× a day
Mitochondrial NRG 2 capsules 2× a day
LVGB Complex with high fat meals
She also gets a B12 injection, melatonin at night.
January of 2018
Her mom found a neurotherapy center. She started having biofeedback sessions with Dr. Spinazola every weekend
. This was thought to help decrease anxiety and irritability. Arrangements were made with friends to help get her downstate to Ann Arbor for the treatments. She would stay with her parents and they would also take her to craniosacral massage appointments.
January 10, 2018
Dr. Linkner felt that MaryFran would benefit from drinking Nourish or the trademark name Liquid Hope. Her mom was able to get it covered through the insurance as she was to the point of having difficulty eating solid foods now. This is an organic, functional formularies meal replacement. You need a physician prescription in order to use it. It basically contains vitamins with garbanzo beans, peas, carrots, brown rice, flax oil, sprouted quinoa, sweet potato, broccoli, almond butter, kale, and some spices. One pouch has 450 calories and 23 grams of protein. She keeps losing weight, which is not a good indicator for patients with ALS.
Side note:
Her weight has been steadily decreasing and while for most of us that is usually a good thing, for ALS patients that is bad indicator. From August of 2016 she weighed 122 lbs., and by November of 2017 she was down to 107 lbs.