A brief timeline

It's hard to believe that it has been almost a year since I applied as a candidate for this trial. It look a few months for my application to be reviewed and then I broke both of my arms (yes, both at once- thanks to all the steroids I have had to take to combat my relapses I now have brittle bones) so I didn't go in to Northwestern for an evaluation until Thanksgiving. We switched insurance at the start of the new year but didn't find out the plan details until February which is when were able to finish my evaluation. Since then I have been going down to Chicago every few weeks for testing.

Yup, that's a broke arm

I have had some allergic reactions to antibiotics before so there was a lot of testing to find out what they could give me. Good news though, it looks like it is now safe for me to have Keflex and pencil. They were all worried about this sinus infection I have had for probably about two unsympathetic years but I guess if the infection were to flare up while my immune system is depleted then it might kill me and that could be bad. 👻 I ended up having to have surgery to try to clear the infection...which it did but now I have a different type of sinus infection 🤕 The Infectious Disease department cleared me for transplant and now we have a plan moving forward for what antibiotics I should take.

I completed the last of the pretesting without further complications. A million tests were run and things came back pretty normal. There is even a test called the "Burt Series", not sure what it is testing for but I think it's cool that my doctor has a test named after him. Interestingly enough, we discovered that part of my lung isn't fully developed but we aren't supposed to worry about. Um ok well  I ended up having to stay in Chicago longer than originally planned

note to those going through pretesting in Chicago -- they will make you do a 24 hour urine collection. It has to be refrigerated the whole time, you can't drink alcohol before or during the test and they would prefer for any contrast dyes to be out of your system. They may not tell you any of this until you turn your collection in and you find out that you have to redo it. While it is also possible for someone else to turn in your collection for you, you may get scolded because there is a blood test they need to do at the same time that wasn't mentioned before.--

but it was really nice because I had more time to meet some other people going through the process. If you are going through this process I strongly suggest taking the time to physical meet some of the people. The Facebook group has been awesome but it's even better meeting these people in real life. It has been nice to meet up and talk with people even if it is just meeting them at labs. My HSCT brother did a really good job summarizing  how I felt after the week of pretesting in this video.

Now that pretesting is done, I will moving onto 2 weeks of mobilization. I will be getting my first dose of chemo during this time and then having my stem cells removed.


Below is an overview of the procedure timeline:

~Initial Evaluation (1-5 days)	*Lodging required	✔️✔️Completed November 2015
~Pre-Transplant Testing (1-2 Weeks)	*Lodging required	✔️✔️Completed June 2016
~Mobilization/Harvest Autologous SCT (10-14 days)	*Lodging required Admission to the hospital for one night only to receive chemotherapy (cyclophosphamide infusion). For the remainder of the stay, appointments and procedures will be outpatient.	🔜☑️currently in process June 2016
~Stem Cell Transplant (approximately 16-21 days) Patient will be hospitalized for the entire stem cell transplant admission.	A caregiver is allowed to stay in the room with the patient. There is a pull-out couch to sleep on and showers available for use in the hospital. Upon discharge, patients will need to arrange for housing if not going straight home from the hospital.	🔜July 2016

So why chemo?

I have gotten a couple of comments about treating my MS with chemo. Am I scared? Isn't it risky? I'm not scared. It has been a little nerve wracking because there have been a lot of unknowns in this process and much of it has been hurry up and wait but to be honest the thing I have been most nervous about was how my hair would turn out.

Gotta have blue hair

💇🏻 💇 🏻I wanted to cut it short so it wasn't as big of a shock when I lose my hair. And I dyed it blue because I wanted something funky and wanted to feel like a badass chick going into chemo. Unfortunately there were some problems at the salon, like all the color washing out the first time and it didn't really end up the color I wanted. I didn't really think it looked that good but I keep getting these random comments on the street which helps the self esteem.

Greek Runes: Strength overcoming challenge

I'm not nervous about this treatment because it has been proven to work. Dr Burt has successfully treated hundreds of MS patients. The treatment has fewer longer term side effects and more promising results than the other drugs. I know that the chemo will be a challenge but I can deal with short term suck for hopefully longer lasting good. I'd rather face a week of chemo than deal with the daily side effects that I was getting from some of the previous medications I was on.

I know it sounds odd but I'm excited to get chemo. I know it is my best shot at real recovery, at getting my life back to normal, because to tell the truth MS has been kicking my ass. I know that it is hard to see how the MS effects me sometimes and that a lot of times I appear relatively unencumbered but when the disease acts up it hits me hard. Like two months ago when I lost control of my hand due to a flare up. It took almost two weeks before I was able to use utensils again. Now things are pretty well back to "normal" but it took a much of steroids, time, and therapy to get there. Each time I have a flare up we never know what the symptoms will be or how long it will take to recover or to what extent I will recover. I'm ready for that not to be the reality I face every few months.

I'm in a Clinical Trial!!

It has been a long time since I did an update here. There were a few reasons why I stopped. My health got worse and it was physically challenging to do. Sometimes I wanted to write but didn't know how to keep things positive so just didn't say anything. I also let the haters get to me. There have been people who have accused me of faking my MS for attention. That has been a hard reality to face but I'm going to try to update more frequently and not let the haters get to me.

Quite a bit has happened since I last posted, I had to switch medications to Tecfidera because the Gileyna was causing me heart issues and it wasn't as effective as we wanted it to be. I was on Tecfidera for about two years before we started looking for another treatment option. I was still having flare ups every few months and the side effects were bothering me daily. It bothered my stomach and it caused severe flushing, it was super fun when the neighbor kids were afraid of me and said I looked like a monster. Turns out I have more energy now that I'm not taking Benadryl ever six hours, go figure. The main reason I finally stopped the Tecfidera is because I was accepted into a promising clinical trial.

Dr Burt at Northwestern in Chicago is doing a stage 3 study using a combination of your own stem cells and chemo to restart the immune system. He treats several autoimmune conditions with it and it has proven to be safe. This trial is comparing the efficiency of the treatment versus standard MS disease modifying therapies. Dr Burt will be treating me this summer with an Autologous Hematopoietic Stem Cell Transplant this summer to control my MS. What this means is that I will be receiving a transplant of my own stem cells after undergoing chemo. It is the same type of procedure that cancer patients receive but with the hope that when my immune system is wiped out that my immune system "forgets" that I had MS. 

Even better news, insurance has agreed to cover most of the costs of the treatment. Without insurance the price tag can be $150k or so. There are other facilities around the world performing similar procedures for less but insurance doesn't cover them and it is still +$40k, also known as more money than we can afford, so I quite grateful insurance is covering. I was also quite fortunate in that I didn't have to deal with any appeals and my neurologist supports this course of treatment, unfortunately a lot of patients have to deal with those obstacles but apparently our new insurance company and the doctors agree that I have a more aggressive form of MS and need a stronger treatment option. Hooray for insurance/doctor support but :( that that is the way my MS is working out. It has always been easy for me to help others, it is something that I love to do, but it is really difficult for me to ask for help but I’m asking now. Please support me as I undergo this life changing procedure. We are fundraising to help offset the costs that insurance will not cover. To make a tax eligible donation please visit https://helphopelive.org/campaign/10851. All donations will be going to my treatment costs. This website will be used in addition to my blog for treatment updates. 

I could also use your thoughts and prayers going through this procedure. I will be updating this blog more frequently and hope you will continue reading.