Let the Journey Begin!

September 5, 2017,

Registered for courses in personal training and weight management specialist. Reinventing myself, at least I can still use my psych and aba degree in my new venture as needed.

trainer

Certified Weight Management Specialist II

The job I had before my treatment shut down, hum? Helping people, Medicaid paid, sounds like Government cuts. For the children too? Terrible.

August 28,2017 (Day +190)

Rituximab infusion #3 success on the first try, very happy I only have 2 left!

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August 22, 2017 (Day +184)

WBC 6.1  RBC 4.03 Platelets 235 Absolute Neutrophils 3.8

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July 28, 2017 (Day +159)

WBC 5.4  RBC 3.85 Platelets 243 Absolute Neutrophils 3.6

Roller coaster…

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June 29, 2017 (Day +140) 

Rituximab infusion #2, veins not cooperating, 5th try was successful! No allergic reaction. Three more to go…

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June 27, 2017 (Day +138) 

WBC 12.9  RBC 3.63 Platelets 238 Absolute Neutrophils 10.2

My blood work is a roller coaster! Dr. says it’s normal after chemo and not to worry.

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June 24, 2017 (Day +135) 

Tomorrow I start the 40mg each morning for three days in preparation for Rituximab infusion #2

While I have not been posting for over a month I have updates on my progress. I am able to take eggs out of the carton, hold a pot or bowl with one hand and scoop food out with the other, put toothpaste on my tooth brush and not have to put it on the counter to use 2 hands opening the tooth paste, I can put my fit bit on without help, put Tilly’s choke collar on her myself and tolerate the sun for hours instead of 20 minutes! I am working on my typing skills…

 

sorry, just turn your head

 

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May  31, 2017 (Day +111)  Gotta get stronger! 

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May 20, 2017 (Day +100) 11,422 steps, that’s 4.91 miles!

Wow!

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May 19, 2017 (Day +99) 8,607 steps, that’s 3.7 miles!

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May 18, 2017 (Day +98) 8,024 steps, that’s 3.45 miles!

WBC 3.8  RBC 3.63 Platelets 201 Absolute Neutrophils 2.2

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May 17, 2017 (Day +97) 9,422 steps, that’s 4.05 miles!

I am averaging 3 to 4 miles a day!

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May 13, 2017 (Day +93) 9,310 steps, that’s 4 miles!

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April 28, 2017 (Day +78) 

Must learn to rest. Must come to terms that I am NOT Superwoman!

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April 24, 2017 (Day +74) 2,769 Steps

Rituximab infusion 2nd try. Steroids 3 days in a row and I will have it started in the iv. Also benedryl in iv too. And I have a bell to ring if I need anything. Went perfect, no allergic reaction at all!

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April 20, 2017 (Day +70) 6,598 Steps

Nobody noted I had an allergic reaction to the Rituximab infusion in Puebla   So, needle pulled out, I’ll take steroids for 3 days and have the infusion on Monday. I did get some saline though!
Ok. I go to Carson on Monday morning for my transfusion.  My hematologist put me on steroids first to lessen my allergic reaction to the Rituximab.

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April 18, 2017 (Day +68) 7,178 Steps

WBC 4.1  RBC 3.81 Platelets 229 Absolute Neutrophils 2.7

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April 4, 2017 (Day +53) 8,258 Steps

I got a phone call from the lab, Dr. Perez wants two  different blood tests, General Chemistry (all was within range) and C-Reactive Protein (CRP to check inflammation, which is in range as well).  My next blood work will be on the 18th, two days before my first at home Rituximab infusion!

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March 30, 2017 (Day +48) 798 Steps

WBC 3.7  RBC 3.63 Platelets 174 Absolute Neutrophils 2.9

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March 27, 2017 (Day +45) 6,221 Steps

WBC 4.3  RBC 3.77 Platelets 154 Absolute Neutrophils 2.5

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March 23, 2017 (Day +41) 903 Steps

WBC 4.0  RBC 3.65 Platelets 153 Absolute Neutrophils 2.8

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March 20, 2017 (Day +38) 155 Steps

All numbers a little lower, this is the roller coaster.

WBC 3.0  RBC 3.70 Platelets 179 Absolute Neutrophils 1.7

got a Fit Bit, my walking is better, so lets start counting steps…  

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March 16, 2017 (Day +34)

Numbers raised, no need for a shot of neupogen AKA Filgrastim. WBC 3.6 RBC 4.09 Platelets 250 Absolute Neutrophils 2.1   since the infusion center is 5 minutes from home. I drove and did fine!

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March 13, 2017 (Day +31)

Too low, WBC 2.1  RBC 3.88 Platelets 294 Absolute Neutrophils 1.0

Blood tests 2 times a week now for the next 3 weeks.

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March 6, 2017 (Day +24)

Blood work, I feel great, looking forward to physical therapy! WBC 3.3  RBC 3.80 Platelets 351 Absolute Neutrophils 2.1

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March 1, 2017 (Day +19)

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Please share this informational link if you or someone you know has an autoimmune disease! The immune Renewal Foundation is a great place to start your research they are on face book.

ALSO, google HSCT blogs to see others that had the same treatment as me.

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February 28, 2017 (Day +18)

Rest, eat, rest, eat, I am so hungry! In order to stay safe…

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February 27, 2017 (Day +17)

8:15 am visit to Dr. Perez, my hematologist. Blood work on Mondays and visits with him on Wednesdays so he can physically see me and how I am doing! WBC 3.9 RBC 4.26      Platelets 212

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February 26, 2017 (Day +16)

A half hour delay for a potential opened latch made the flight 30 minutes late! I missed the flight to Reno yesterday so they put us up at Comfort Suites… Got to Reno at 11:30 am!

Lance and Dad to welcome me back! I slept the whole way home, I never sleep in the car!

 

It’s so nice to be home!

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February 25, 2017 (Day +15)

3:50 pm Delta Airlines to take me home! I miss my family!

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February 24, 2017 (Day +14)

Walking better and the weight has been lifted and I can raise my knee!

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February 23, 2017 (Day +13)

Slept in, started packing, 2 more days! Pictures before we go home…

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February 22, 2017 (Day +12)

I will sleep in, no shots or blood draw!

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February 21, 2017 (Day +11)

NO Filgrastrim shot, Yeah!  2 small vials of blood taken. We saw the Big Guy today, Dr. Ruiz!  My leukocytes are up to 48,200. He told me my treatment has been successful and I may go home! My leukocytes will level out, I have to watch what I eat so I reviewed that with him and I will be fine. I cannot eat salads, fresh fruit and vegetables. The things I can eat outweigh that, so another small price to pay that is temporary until my immune system is stronger. I will be visiting the lab and hematologist after I am home, physical therapy 2-3 weeks after too. Put a little pin on Gardnerville, well, below Reno to show someone came from there to defeat the MonSter.

Last infusion of Rituximab until I am home where I get 5 preventative 100mg infusions.

20170221_160114  6984-mms-1487746416490-attachment1-868039299  6983-mms-1487746383402-attachment1-108344664  6982-mms-1487746477160-attachment1-600184058  The Infusion Team

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February 20, 2017 (Day +10)

My leukocytes are up to 3,100  I will only need one more filgrastrim shot! I need to be at least 4,000  Nausea today so nibbling crackers and water, the electrolyte drink tastes terrible and makes me nauseous by itself. Feeling better at 11pm, ate some noodles, I’m gonna live!

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February 19, 2017 (Day +9)

Today is the day to cut my hair off and shave my head. more hair is coming out than usual so it’s time. I am donating it to children with hair loss. Diana put my hair in pony tails…

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February 18, 2017 (Day +8)

My walking feels better than yesterday, I veer to the left, gotta work on that! Love my warm socks that my grand kids got me for Christmas! Since I can’t go out of the apartment I can practice all day!

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February 17, 2017 (Day +7)

Filgrastrim shot given and 2 small vials of blood taken. My Leukocytes are at 400, the Hematologist said my number will start to go up, those awful filgrastrim shots are not only helping to keep my number from going too low, but will help to raise it. It is the chemo that causes the leukocytes to get so low, it’s the necessity of rebooting my immune system. He also said this is when he sees many patients having improvement in balance, walking and/or writing!

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February 16, 2017 (Day +6)

Good morning Filgrastrim…   On lock down, I have to stay away from possible invaders that can make me very ill. Music, games on the ipad and a movie fill the day. I also practice walking down the hall watching each leg take steps. My left leg that seemed to weigh 50 pounds does not feel heavy, I can lift my knee more than before treatment started! I can’t wait to start physical therapy and get back on my Pilates reformer, stretching feels so good!

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February 15, 2017 (Day +5)

Filgrastrim and 2 small vials of blood this morning. Appointment with hematologist, My numbers went down more as expected. 1,700 Leukocytes  I’ll ask my shot person tomorrow, he is in the hematology department. A little walking to post tomorrow…

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February 14, 2017 (Day +4)

Happy Valentines Day… this is the first time I will not be with Lance in 25 years!   This must be made up for!

Diana surprised me with chocolate covered cherries and they are ok for me to eat!       Another lazy day, filgrastrim in the morning then…………… Movies and games on the ipad and visiting with Diana….

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February 13, 2017 (Day +2)

8 am, two small vials of blood drawn and one filgrastrim shot, I will not have an evening shot so hoping I do not get a headache or migraine. Since chemo is over I can take an imetrex if needed. Next week I will not need the shots if my blood is good. My red blood cells, white blood cells and platelets are kept track of and will be the deciding factor on the shots I receive. Hematologist says my numbers are a little low and that is perfect, he said I am entering the neutropenic stage, making progress!  3,650 Leukocytes, I will get the exact numbers of Leukocytes, Hemoglobin and one other that I forget on the paperwork when this is done.

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February 12, 2017 (Day +1)

Today was a lazy day, I did not feel like getting out of bed. I was able to sit outside for about ten minutes with a mask on. It’s all about staying away from possible germs. I am shifting into neutropenia where my immune system will be at it’s lowest increasing my risk of being sick. I will spend my time in the apartment and only go to see the hematologist every other day to go over my blood draw that morning. I will receive Filgrastrim shots each morning which go with my results of my blood work.

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February 11, 2017 (Day 0)

vzm-img_20170211_111602ed   Diana, Kory and I. Kory cleans our apartment 6 days a week!

I get my stem cells back! This is the day, when, by infusion, my stem cells are given back. It will last 20 to 30 minutes. The stem cells are mine, so they will not be rejected.

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February 10, 2017 (Day -1)

LAST CHEMO! I woke up headache free, so I knew it was going to be a good day. Diana made me breakfast (Eggs with onions and mushrooms, apple slices, blackberries, raspberries, and blueberries) I cannot eat like this during neutropenia.

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February 9, 2017 (Day -2)

Apheresis day,  this is how blood will be taken from me and stem cells separated and kept in refrigeration until Day 0 (zero). Stem cells counted before we can start chemo, our whole group passed!    I needed 50 million and got 107 million! I get chemo!  Even though I didn’t feel great in the morning I started feeling better and we went to eat while they were counting our stem cells. Dr. Priesca said that my headaches seemed to be caused by the Filgrastim shots we received, all my bone pain was in my skull. I did not hurt anywhere else. Those are my stem cells! In this room it feels like we are sitting on top of a giant motor of a car, you can hear an engine and feel the vibration!

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February 8, 2017 (Day -3)

Catheter placement for Aphresis, so my blood can be taken, stem cells separated and kept then the blood minus stem cells goes back in me.

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resized_20170209_073959    They did a wonderful job, it doesn’t even hurt!

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February 7, 2017 (Day -4)

shopping. The mall is huge, 2 stories and a casino!

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February 6, 2017 (Day -5)

We walked to Walmart today, it’s just around the block then our group -2 people had dinner at P. F. Chang’s.  We got back to the apartments in time for our evening shot…  It’s like curfew!

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February 5, 2017 (Day -6)

New pills to take…

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February 4, 2017 (Day -7)

Filgrastim shots am and pm

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February 3, 2017 (Day -8)

Migraine today, I will not take an Imitrex unless I know it’s ok with the pills I am taking. Finaly at 8pm I got the ok, Migraine gone in 15 minutes. I did learn the Imitrex will not go with the chemo though. They told me how strong the Imitrex was, all I know is it’s the only thing that works. I learn later it’s from those shots…

me1

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February 2, 2017 (Day -9)

Filgrastim shots twice a day to help my bones release more stem cells in preparation for harvest and three little pills in the morning and one at night I think are a steriod, antiviral and I’ll find out. The shots are sub Q and sting, but I can do it!

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Also Played tourist today in Cholula, where they have 360 churches and fireworks are let off all day. http://www.visitmexico.com/es/centro-historico-de-cholula-puebla     Diana on the littlest volcano!

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100_3007100_3012100_3005   Which one is m.s?  100_3008

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February 1, 2017 (Day -10)

I survived the first chemo, so onward to day 2, the needle remained in my arm from the day before so it was a relief to know I will not be poked by a needle again! I started feeling a bit of nausea on the way knowing I would receive the anti-nausea medicine, nope, I was still feeling nausea after 3 hours.  I finally threw up!  Now, I am healthy, yet I was the only one that got sick in our group.

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January 31, 2017 (Day -11)

Our 20 was divided into four groups of five, the day started with an information consult, medical history then a hematology consultation. I was given the green light by Dr. Ruiz, I was healthy enough to begin CHEMO!

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At 1pm I began a 5-hour session of chemo, I was one out of four that I will become friends with for life!  We were given an anti-nausea medication and something to help our stomachs take the chemo. The only part that hurt was the needle going into the vein on my arm, it really hurt. It did not feel right or look right, so the head nurse replaced the needle putting a new one into my right arm, now try to text! I was able to relax in my recliner.

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January 30, 2017 (day -12)

At 7am I had 9 vials of blood drawn and a poke in the ear to check how well my blood coagulates, (the vampires) Lupita and Juan were on time, the blood draw was painless without a bruise, but on my earlobe? Long day today of testing…. Great news with my lungs are good, after the EKG the cardiologist said I’m perfect! I saw the neurologist last. My neurologist of 15 years and the m.s. specialist that I saw for 3 appointments never gave me an EDSS (estimated disability status score) the specialist even said I do not need one. That specialist made $23,000.00 in 2015 from the drug companies that make m.s. drugs.
So, I go online and find out how to do an EDSS, more to it than I thought, so I guesstimated 4-4.5
It goes from 0 to 10.

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All 20 patients and caregivers were taken to a conference hall where everything was gone over for our treatment and questions were answered. Paperwork was signed and we started further testing. My meeting with the neurologist was detailed more than ever before. I was given a 6 on the EDSS (estimated disability score scale) which made me cry, Then I got Pissed, how dare the FDA  decide when we can actually be helped? We have an FDA and other Countries have ethics! All of the drugs used for HSCT are and have been approved by the FDA for years, now they have authority to disapprove people?

It’s a good thing I’m here!

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January 29, 2017

some of the patients were picked up from other hotels and were shuttled to Puebla too, twenty in all with their caregivers. They have not only come from America, but London, Norway, Denmark, Ireland, Australia, and the Netherlands!  I was able to drop my bags at the apartment,  we went to Walmart for 1 hour to get some food. A driver took me to pick up Diana at the Puebla airport.  Other patients went out to dinner so we were able to join them. Pegah (Denmark) is in front on the right, she is 30, we are close in symptoms and she will be in a group of 5 with me. Pegah’s mother Sarah and her brother Peyman will care for her.

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I am behind that lady on the right, toward the back. Really.

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Our 2 bedroom 2 bath apartment was perfect with a washer and dryer, TV and internet. We also have Kory, she will clean the apartment 6 days a week!

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January 28, 2017

Landed in Mexico, City! Glad I ordered Pesos at home so I could tip the people that got me to the Hotel. Jennifer got in at 3pm and me at 5pm. I got a room with 2 double beds so it didn’t look like I was alone, strange Country whats a girl to do? Jennifer was on the January 30th HSCT facebook group and since we would meet up with Diana and her care person Juanita on Sunday it worked out perfect.

20150917_115218 Diana!

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In downtown L. A. a woman who has Multiple Sclerosis painted a mural and people could sign it. I believe Pat Jenkins, Mayra McGown and I are the only ones who did. Thank you, Jonna for taking me and for your legible print!

This was an eye-opening experience also, I was honored to be able to volunteer with Jonna for the month of January with Worthy of Love’s Birthday party! They celebrated 4 years of giving monthly birthdays for children who otherwise will not have birthday parties.

https://www.facebook.com/worthyoflovela/?pnref=story

 

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Muralist Transforms Downtown LA Area To Raise Awareness For Multiple Sclerosis

Arrived at my cousin Jonna’s 1 1/2 hours and 2 Xanax later. 4 days of visiting was not long enough, but we had fun!

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January 24, 2017

My first passport!

EPSON MFP image

EPSON MFP image

At the Reno airport my dad met Lance and I  I have never been away for over a month!

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I will fly out of Reno, Nevada on January 24th to LA for a short visit with my cousin Jonna and leave from there to Mexico City on the 28th. I will share a room with Jennifer, flying in from Virginia, who is also fed up with her m.s. On Sunday we, along with several other patients that fly in from around the world will travel 2 hours by shuttle to Puebla where we will drop off our luggage and hopefully get some shopping in before the next few busy days.

M.S.Evil!

Thankful I do not have all of these symptoms!

MS Symptoms What You Can do To Understand
Painful Heavy Legs+ Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?
Painful Feet Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.
Loss of Feeling in Hands and/or Arms Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.
Loss of Feeling in Feet and/or Legs Ask a doc for a shot of Novocain in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.
TN (Trigeminal Neuralgia) Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.
Uncontrollable Itching Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.
Tingling Stick your finger in an electrical socket – preferably wet.
Tight Banded Feeling Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?
Shots Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot every time we do our shot.
Side Effects From the Shot Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.
Trouble Lifting Arms Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
Spasticity Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.
Poor Hearing/Buzzing in Ears Put a bee in each ear and then put a plug in each one so that the bee stays put…bzzz
Balance and Walking Problems Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.
Urgently Needing to Pee We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.
Bizarre and Inexplicable Sensations Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.
Pins and Needles Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.
Dizziness (Vertigo) Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.
Fatigue Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.
Cognitive Function (Brain Fog) Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.
Bowel Problems Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard             un-cushioned chair and stay there till tears appeared.
Burning Feeling Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.
Intention Tremor Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.
Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’s) Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.
Vision Problems (Optic Neuritis) Smear Vaseline on glasses and then wear them to read the newspaper.
Memory Issues Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.
Foot Drop Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.
Depression Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.
Fear Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.
Swallowing Try swallowing the hottest chili pepper you can find.
Heat Intolerance or Feeling Hot When it’s Really Not You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms – welcome to our world.

I don’t want to play anymore!

Multiple (many) Sclerosis (scars)

Multiple Sclerosis History, it’s a fight against a MonSter!

DeAnna Lopes

DOB 01/04/1968

Prior to Dx:

1991 numbness mid-thorax around left side to center of back about 3” wide.

May, 1991 vision 20/70

March 4, 1998, Loss of hearing in left ear prednisone prescribed since it helped with previous numbness. Notes; possible inflammatory disease.

January 21, 2000, Tingling and blood rush feeling when flexing head (L,Merits) and clumsiness/weakness in left arm and hand. I cannot use it to type. Oral steroid taper given, neurologist sees this as potential CNS demyelinating disease. I need an MRI he feels. I have no insurance.

MRI #1, January 28, 2000 extensive areas of demyelination. *See records for details.

February 25, 2000, I have had my first MRI. Neurologist will review scan with the M.S. Specialist he is partners with. He will strongly want me on immunomodulation.

I go back in two weeks.

March 13, 2000, I AM DIAGNOSED. I have Relapsing/Remitting MS with persistent motor symptoms. I was supposed to decide on one of three immunomodulators.

Now to decide on the lesser evil…

March 20, 2000, I chose Avonex 30 mcg at one shot a week. I get chills and flu-like symptoms after injection.

April 12, 2000, some improvement in left hand, trying to get typing ability back. Neurologist says I’m stable and to keep taking the Avonex.

June 14, 2000, still clumsy in left hand, teaching preschool so I do not have to type. Still taking Avonex with soreness at injection site and having some hair loss.

October 30, 2001, I’m doing fairly well, injection reactions from Avonex have subsided and another MRI ordered.

MRI #2, November 16, 2001, Slight progression *See records for details.

December 11,2001, I have black holes.

June 28, 2002, still clumsy in left hand. Experiencing fatigue, given Amantadine 100mg. it did nothing. Neurologist gave a prescription for Provigil to try for fatigue, nothing.

November 11, 2002, minor weakness on left side, on Avonex 30mg, filled out survey to see if I can be part of a project for an auto injector. Some sexual dysfunction. M.S. is evil.

MRI #3, December 6, 2002, 2 small punctate areas of enhancement in the parietal lobe region *See records for detail.

January 24, 2003, left arm is more numb and weak, weakness in left leg, and numbness in left torso. Some urinary urgency. Slight dragging of left leg, my black holes are T1 black holes. Prescription for prednisone.

December 01, 2003, friend helps me with shots, this is getting old…

MRI #4, December 15, 2003, New approximately 1.5 cm white matter lesion in the left frontal lobe. New enhancement of multiple lesions in both cerebral hemispheres approximately 10 in number * See records for detail.

May 11, 2004, numbness and tingling in both hands. Did a couple weeks to a month of Zoloft.

MRI #5, November 30, 2004, four new enhancing lesions, “by imaging this is one of the worse cases of multiple sclerosis I have seen” says the radiologist. * See records for detail.

June 16, 2005, had one infusion of Tysabri then it was pulled from the market. On Avonex. Migraine headaches have started once a month at that time. Imetrex is all that works.

MRI #6, November 2, 2005, Previously seen enhancement has resolved *See records for detail.

November 2, 2005, my white matter lesions are too numerous to count and my neurologist cannot tell if there are more now than before. I must not use much of my brain or the lesions are only on parts that I do not use because I can walk.

May 2, 2006, Feeling tired, blood work ordered to see if I am anemic.

November 7, 2006, doing well on Avonex, normal finger-to-nose and heel-to-shin and normal gait.

MRI #6, November 14, 2006, No change since previous exam of MRI. *See records for detail.

March 19, 2007, cold wet rag on my right thigh, clumsiness and weakness is back on left arm. This is very noticeable, an exacerbation for sure,

Prescribed Medrol dosepak.

December 10, 2007, I had to stop Avonex due to finances; left side numbness and clumsiness prevail. Neurologist left a note for referral for Copaxone.

September 2007, off of Avonex. My MRI”s have worsened significantly. Avonex deemed a failure.

MRI #7, November 16, 2007, One new 5mm in diameter area of ring enhancement *See records for detail.

MRI #8, May 30, 2008, A new focus of T2 bright signal in the posterior limb of the left internal capsule on axial flair slice #20. *See records for detail.

November 6, 2008, Begin Copaxone 20mg per day.

MRI #9 September 15, 2010, There is active enhancement of several periventricular white matter lesions worse on the left side. Including the new lesion in the left frontal lobe. *See records for detail.

September 30, 2010, Fairly stable on Copaxone since 2008. Stayed in the sun too long doing gardening and it effected my walking. I cannot go for hikes anymore and it looks like I am drunk as I walk. 9 seconds to walk 25 feet. I have new enhancing lesions and a new white matter lesion. Ambulation problems. Stopped Copaxone.

Copaxone is a failure.

Gilenya will be approved in less than one week, and I may benefit by starting Ampyra.

November 11, 2010, on Ampyra, it has increased my walking significantly. EKG and Ophthalmologic exam ordered to begin Gilenya. I finished my degree by finger-pecking essays, in Psychology with a post Baccalaureate in Applied Behavior Analysis.

MRI #10, December 19, 2011, Numerous sub centimeter foci of T2 and flair hyperintensity throughout the subcortical and deep white matter are noted. *See records for detail.

March 4, 2013, Still looking for work, I still have clumsiness and numbness that limits my abilities of what I can do. Stable on Gilenya. My 25 feet of walk time is 7 seconds.

March, 2014, New job interview next week. Hired, love working. I was hired for what I went to school for, working with clients providing psycho-social rehabilitation and behavioral skills training, I love it but I find myself too tired to work to my full extent.

HSCT in 2017! Yes, stop this disease!

Dear Deanna:

First of all I would like to thank you for patience regarding date availability for treatment at Clínica Ruiz. I am pleased to inform you that I have the available dates for 2016. Based on your position on the waiting list you have been assigned for treatment on March 28th 2016.

Two months prior to your scheduled dates I will need the following:

  • Your Latest full spinal and Brain MRI Reports (no older than 2 months old) to be sent  vía e-mail.
  • Treatment to be paid in full vía wire transfer.
  • Travel itinerary to arrange collection at airport. Patient must be ready for traveling and staying in Puebla along with a carer for a 4- 6 week period.

As I am sure you understand time is very important, so I would really appreciate your quick response. Please let me know if you have any inconvenient with this date based on the requisites listed above. If it impossible for you to take this date, than another one will be assigned to you later throughout 2016.

Please let me know if I can be of any further assistance.

Kind Regards,

Danielle

Too soon

I am still raising money, have to reschedule HSCT for another day… Maybe by January of 2017 I will have enough…

April, 2016  Told my boss I’ll be back after I get rid of this disease…

After fundraising (lots of work and amazing donations) adding the balance with a line of credit the HSCT is paid in full, airfare and food. I am off to Mexico City January 28th and to Puebla January 29th to meet Diana who will be my care person. We will stay together for one month. Two ADHD control freaks, friends since grade school!

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About

Written by my daughter because it is very hard for me to ask for help…

DeAnna, my mother… my mommy, a teacher, wife, Nana, daughter, cousin, aunt and dear friend to many.

A Hematopoietic Stem Cell Transplant (Non-Myeloablative chemo) is what my mom needs in order to kill her Multiple Sclerosis. This treatment will halt this disease so it will not progress.  Mortality rate is less than 1%. Unfortunately this procedure cannot be covered by her medical insurance. There is also hope that she will get her balance back and be able to have a chance to do the things that she loves.

She’s dedicated her heart for over 20 years working with children. Achieving her Bachelors in Psychology and post baccalaureate in applied behavior analysis. In March 2000 she was diagnosed with Multiple Sclerosis but that has never stopped her, until now.

This disease has taken away her ability to run, ride a bike and a motorcycle, Snowmobile, play tennis, ski, bowl, wakeboard, hike, sew and type. The biggest thing is her balance.  Her symptoms have worsened to a point that she now has to use a wheel chair for long distances so that she does not fall and hurt herself.

One of the most stressful things for my mom dealing with MS is that she cannot do what she used to. She is tired, parts of her body go numb and she can hardly walk most of the time. And at the prime age of 47, it just isn’t fair.  Her entire life she has worked hard for everything she has needed and not being able to work hard at those things causes her great frustration and heartache. My mother has never been one to ask for help or even complain. Just did what needed to be done, from the time that the sun came up until the late hours of the night.

HSCT comprises of gathering thousands of her stem cells, preserving them through refrigeration, which is safer than freezing, chemotherapy, to lower her immune system substantially, transplanting her own stem cells back into her body. She is not scared to have this treatment. Keeping the multiple sclerosis is what scares her.

Through consistent physical therapy people that have gone through the HSCT process have made great strides in recovery but the first step is getting rid of the MonSter, the Multiple Sclerosis, the disease that takes abilities away…

I want my children to know the great love that my mother has shown me. To be a grandmother that can enjoy activities with them, not from the sidelines in a wheel chair. And we are not the only ones who need her to have this procedure, the children she helps and the ones she will help in the future do as well.

$60,000.00 will cover airfare, the entire treatment and a mandatory care companion to be at her side throughout the entire process.

Please consider helping during this hard, yet hopeful time in our lives. I know that this is a large amount, but every dollar a person gives to this life-changing goal is one step closer if we reach enough people. If you have nothing to spare, we completely understand. Just sharing this fundraiser on your social networks or through email will be a tremendous help. Offering your own survivor story, prayers, well wishes, positive thoughts and love is also greatly appreciated. America can look forward to approval by the FDA of HSCT as a treatment for this autoimmune disease in 2022. She does not have time to wait.

https://helphopelive.org/campaign/9793

Thank you so much,
Christy Welch

Fundraising First…

My first step in reaching my own Hematopoietic Stem Cell Transplant (HSCT)  is to have money to pay for this life saving treatment. I decided to use Help, Hope, Live a 501 C3 that will allow people who donate to get the tax write off.

Tax deductible donations can be made to https://www.helphopelive.org/campaign/9793

I need to raise $54,500.00 for the transplant, about $1,000.00 for air fair 12,500.00 Pesos for medication and $600.00 for food and tips to house cleaners that will clean our apartment daily and drivers that will take us shopping and to the hospital for appointments. I will buy 2 medications there that I will have to take for 6 months post transplant. I will let my neurologist know what I am doing and let him know I will need him to prescribe 5 Rituximab infusions every other month for precautionary measures( it kills off any straggler lymphocytes).

As of November $18,482.62! It is time to borrow from our house because I am not getting any better. Multiple sclerosis is a progressive disease that gets worse on it’s own time! If not stopped I will have permanent wheelchair, bedridden then nursing home./

HSCT will stop the progression in it’s tracks. Tax deductible donations will continue to be taken…

https://helphopelive.org/campaign/9793