Please help us help this mom of two little boys!

July 20, 2015

The transplant is done!!!

Read our blog for more updates: http://rachellejohnson.blogspot.com/

June 16, 2015

We are in the middle of the transplant! Today was my last day of chemo! Wednesday I celebrate my new stem cell birthday!!!

May 14, 2015

Update:

http://rachellejohnson.blogspot.com/2015/05/fly-hotel-hospital-chemo-nausea-drugs.html

April 27, 2015

I'm in Chicago! Pretesting Week begins tomorrow with a very busy day.

9:30 - Pulmonary Function Test

10:45 - 2D Echo

Lunch

1:30 - MRI of my spine

Then a Chest X Ray and lots of Blood work.

We are doing all of these tests to make sure my body can handle the stress of the transplant. I'm expecting to pass with flying colors. :)

April 25, 2015

The kids are gone, the house is quiet.

The calm before the storm. These next few months are going to test me in ways I've not been tested. I'm as ready as I can be.

April 18, 2015

We are one week away from the beginning to this journey! So much to do, so little time. Biggest thing on my to do list? Get photos to take with me. Those are essential to my souls survival.

March 28, 2015

29 Days until pretesting week begins!!!!! Hard to believe that after all these months, this healing journey is about to get started! :)

March 11, 2015

Here is a video that truly shows what I go through every month and why we are so desperate for this life saving transplant.

https://www.youtube.com/watch?v=mxTq3tz1yeY

March 10, 2015

I'm getting ready! April 26th is my first trip out to Chicago. That week will consist of pre-testing (blood work, MRIs, echo...). They want to make sure my body can handle the transplant without any difficulty.

Items and bags are starting to be gathered. Last minute clothing items needed for the transplant are being ordered and sewn. Preparations for the boys are getting nailed down.

It's all coming together. Something that seemed like an impossibility is becoming a reality!

February 4, 2015

Some frequently asked questions, answered.

Treatment Goal

Reset Rachelle's immune system so that it no longer attacks the myelin in her nerves. If successful, we hope for a long-term remission that will halt progression.

A secondary goal is for improvement of Rachelle's current symptoms. Once the auto-immune process is stopped, her body has the ability to partially repair the scarring in her legs, feet & hands. While many patients experience some degree of improvement, it is impossible to predict Rachelle's results.

Of course, improvements would be awesome but most important is to stop progression.

The Procedure

It's called hematopoietic stem-cell transplantation (HSCT). The words "stem-cell" and "transplant" are a bit misleading. This is not the type of regenerative treatment that we all read about in the news nor is Rachelle getting cells from a donor.

The positive results from this treatment are produced by using chemotherapy to very strongly suppress Rachelle's immune system. The objective is to kill the components of Rachelle's immune system that have the "memory" to target her myelin. By erasing this "immune memory" the hope is to essentially stop the auto-immune disease process.

Once the immune system is suppressed with chemo, Rachelle will get a transfusion of her own stem-cells which help facilitate the healing of her immune system. These stem-cells are collected prior to the chemo and stored until she is ready for the infusion. Hence, the name "hematopoietic stem-cell transplantation" which means "getting a transplant of your own stem-cells".

Is this the same treatment used for cancer?

That is an excellent question! The answer is yes and no.

Rachelle's treatment is based on the procedure used to treat various forms of cancer. These procedures are called bone marrow transplants or stem-cell transplants. Developed 40 years ago, 50,000 cancer patients per year undergo these procedures.

For cancer, the goal is to fully kill the entire immune system including the bone marrow where immune cells are produced. To accomplish this, radiation is often used in conjunction with a more powerful chemotherapy cocktail. These protocols are called "myeloablative" and patients often require a bone marrow transplant from a donor to survive.

Unlike cancer, the protocol used to treat CIDP is less toxic. For CIDP, the target is only the "immune memory" and trials have shown that this can be accomplished with a less toxic protocol. Therefore, Rachelle's treatment is considered "non-myeloablative" (also referred to as transplant-lite) which is less risky than most cancer protocols.

The Process

Simply stated, Rachelle is getting chemo. She will experience many of the side-effects you know about including losing her hair.

There are two phases to the treatment - harvest and transplant.

Harvest (10 days): First, Rachelle's body is stimulated to produce the type of stem-cells that will later help her heal. A single dose of chemo is used to get the production of stem-cells going. After giving her body a week to produce as many stem cells as possible, the "stemmies" are harvested by filtering her blood through a machine. Her stem-cells are then purified, frozen and stored.

Transplant (3 Weeks): Rachelle will be admitted to Northwestern hospital and will be inpatient for the entire duration of this phase.

The transplant starts with "conditioning" which is the process of suppressing (killing) her immune system with chemo. For 5 days Rachelle will get infusions of cyclophosphamide and rATG.

After a day of rest, Rachelle's harvested stem-cells are infused back into her. This is considered the "transplant".

For the next few weeks, Rachelle will remain in isolation in the hospital as we wait for immune system to start to recover ("engraftment"). This is the phase when she is most at risk of infection since she essentially has no immune system.

Recovery

Once Rachelle's blood levels start to show signs of recovery she will come home. For the first several months she will need to be very careful as her immune system will still be compromised. She will avoid sick people, crowds, be careful of what she eats, etc.

Eventually, her new immune system will strengthen and the risk of infection subsides. However, it will take as long as a year to fully recover from the effects of the treatment. During this time she will most likely be tired, experience some pain and a few other side effects.

January 27, 2015

The insurance company has agreed to cover the majority of the medical procedures! We are still fine tuning our financial need (what all will insurance cover outpatient vs. inpatient, prescriptions, shots...etc.)

January 21, 2015

INSURANCE APPROVAL CAME TODAY!!!

Amazing news! This is happening, the insurance company is going to pay for it. We are moving forward with planning. I'll speak to them tomorrow about timelines and what the next steps are. :)

January 19, 2015

We are still waiting to hear back from CareFirst. I did contact Paula at Northwestern last Thursday asking how long this part usually takes. She said it varies greatly but that we should be assigned a case worker this week! So things will be moving. Continuing to pray that they approve us on the first request.

January 2, 2015

I am so thankful for all of the love and support we have been shown. You are all helping make this dream of a healthy life, possible. Thanks for being on this journey with us.

December 10, 2014

I got the phone call today. We spoke about what Dr. Allen suggested, getting SCIG more frequently instead of IVIG all at once every few weeks.

Then Dr. Burt asked me what I wanted. I told him I wanted to be well again. He told me that I do not entirely meet the trial criteria.

But (there is a but), he said he'd be willing to treat me OFF STUDY!!! That's right!!! I get to have the treatment! I get to be well! I get to be healed! I get to live again!

There is still one major hurdle that we have to overcome, insurance approval. I will start a new policy effective Jan. 1. We pray and hope that there isn't a battle for coverage.

December 4, 2014

He didn't say no...but he didn't say yes.

Tomorrow morning, at 7:00 AM we will meet with the Neurologist and have the EMG & NCV tests done. These are always very painful as they have to electrify the nerve and muscle to test the velocity and strength of each.

From what others (who have gone before me) have said, Dr Allen needs to get the best picture of what quality of life looks like. Thankfully, I printed out extra copies of my daily struggles and things I can no longer do.

Tuesday next week is when I will find out if I've been accepted into the program. Oh the wait.

December 3, 2014

We are in Chicago!

My first appt. is today at 4:30 (5:30 EST) and is with Dr. Burt. He is the one who will determine if I am given the transplant. We will likely find out in a week if we are officially accepted into the trial.

November 25, 2014

We are Chicago bound!!!!

Insurance is still not responding about whether or not they will cover the evaluation costs. I spoke with the Chicago staff this morning and the cost for self pay for the evaluation will be $2,100! This won't include the MRI or Spinal tap, those will be done later if I'm officially accepted. By going now, we will be able to make better decisions about whether I need to change health insurance for the transplant.

November 21, 2014

Our health insurance is giving us the run around. We had verbal authorization that the testing would be covered, now we don't. So we are likely going to have to postpone our trip until we can get insurance all worked out. :(

November 5, 2014

Flights are booked! We are going to Chicago!!!

Evaluation Dates have been scheduled for 12/03 - 12/05 with Dr. Burt & Dr. Allen.

This will be a time for her to ask questions, learn more about the HSCT procedure and get further testing done.

They will perform various procedures on her to determine if she is a candidate for HSCT.

Those tests will include an MRI, EMG, NCV & various lab orders.

Please be praying for safe travel, Rachelle's body to be cooperative as she handles the stress, the Dr.'s and nurses we will be meeting and a clear answer as to whether or not HSCT is for us.