In December of 2010, I began a journey to pursue a stem cell transplant of my own stem cells. The following blogs were from an old blog of mine. I’d like to share them with you.
Monday, December 27, 2010
Welcome to my blog. I’m creating this to give updates on the stem cell experience I will go through. As most of you know, I have Neuromyelitis Optica aka Devic’s Disease. I was diagnosed in December 2007. Through the grace of God, I found a light at the end of the tunnel. I will be going to Chicago for stem cell treatment with Northwestern. I have not had great success with the treatments given to me to slow the aggressive nature of NMO and feel that stem cell is my best option. Besides the paralysis that NMO attacks cause, there are daily issues like chronic pain, spasms, and fatigue that effect my quality of life. I have 4 children, the youngest who is almost 3 and this makes it hard to keep up with her. I find that some natural supplements, a positive attitude, and my faith keep me strong to help things stay as “normal” as I can for our family.
When I return to Chicago, I will be going through numerous tests then my first round of chemo to kill the mature stem cells. I will take shots to stimulate my stem cells then they will harvest my own “newborn” stem cells, clean them up and return them to me after going through 4 more rounds of chemo. It will be like rebooting a computer but they will be rebooting my immune system. This will be about a 2 month stay with 2 hospitalizations and a lot of outpatient visits. The doctors feel that this is the perfect time for me before more attacks create too much damage and they can’t help me. This all sounds like a lot but I’m ready to fight this and I know my family and The Divine will help me get through it.
Where we are at now: We are waiting for insurance approval because this is a very expensive process. We are all hoping this will begin in February 2011, timing is of the essence before another attack comes and creates further damage. The last attack was in early November 2010 but luckily we caught it early and I have already gained back sensation and strength in my left leg and hand. Now the return to Chicago depends on how long the official approval from insurance takes. Travel, lodging, prescriptions, deductibles and anything left over will be at our own expense but Dr. Burt at Northwestern Memorial is the only facility offering this in the United States for my condition.
Please keep us in your prayers because I believe prayer is powerful! Thank you!
Thursday, January 20, 2011
Status on Stem Cell
Just wanted to give an update: still waiting on insurance approval. The financial liaison just informed me that she has been given the run around with a 2nd submission request. She finally got the right contact and has resubmitted the request for approval. I will be assigned to a case manager and then we’ll know what further information will be required, if any. It is frustrating to wait but in the meantime, we are trying to spend as much time as we can with our children, family, and friends. We are also working on setting up arrangements to prepare for our absence. The hope is that we will be back in Chicago no later than mid March and that the attacks stay at bay so there isn’t any further damage to my spinal cord.
We have been overwhelmed with the wonderful words, prayers and donations. It is all very encouraging! As soon as I know a date when we will be able to return to Chicago to move forward, I will make an announcement. In the meantime, thank you for all your support and please keep us in your prayers!
Friday, January 28, 2011
Going back to Chicago..
We got an update today. I was assigned a case manager from insurance. We are going out to Chicago in February. Now that things are rolling, we have to finalize a lot. Travel arrangements, appointments, and all the final things at home. Can you imagine leaving your family and life for about 2 months? It’s hard for us to imagine too but we’re going to make it happen and count our blessings all the way. We’re looking at this like, the weeks away will be years gained.
I’m excited but nervous at the same time because we’re moving forward but it’s going to be quite a process. We have family staying with our kids at our home so things can stay as normal for them as possible which is a great blessing. Mike & I have some family in Chicago to lend us moral support while we’re out there. I’m going to work on getting strong emotionally, physically, & spiritually so the fighter within me will be ready.
Tuesday, February 22, 2011
Well I arrived in Chicago for the long haul on Sunday. Very emotional to leave my babies but I knew it would be. I just finished day 2 of tests and it’s exhausting but has to be done. I have one more day of several tests and then only 1 on Thursday then I can take a breather before the first round of chemo begins. So far, everyone at Northwestern Memorial is great! This is a wonderful hospital and I think I’ll be in great hands.
I feel very encouraged from the great words and support I’ve received. I will keep trying to update my blog, so stay tuned. 😀
Wednesday, February 23, 2011
Tests in Chicago
Day 3 of tests are done and I’m wore out. I only have one more test tomorrow. So far completed lots of blood work, lung, heart, optic nerve, chest x-ray, CT scan, vein check, dental & some other tests with Dr. Burt are completed. The results that are in thus far are all good. First round of chemo that they call “mobilization” is scheduled for March 7th.
They did this test for short term memory and it got really confusing for me and it was frustrating but I guess it’s a normal reaction for people like me with neurological issues. Dr. Burt was very positive and the nurses are so supportive.
I am really looking forward to the band of tightness and pain to go away after the stem cell is done. There is a possibility that it won’t completely go away depending on if the pain is being caused by nerve damage or something else relating to Devics. So the other aches and pains I get may or may not go away as well but I’m hopeful. Even if the other aches and pains I get remain an issue but my back & trunk pain go away, that will be lovely! I’ve had the trunk & back pain since this all began in 2007 so you can imagine what a relief it will be to not deal with it anymore.
Ok, I’m going to rest a bit because I’m very fatigued but before I go I’ve decided to add inspirational thoughts at the end of each blog entry from now on from me or from a quote. I always love to stay in the grateful & positive mind frame. 😀
*Inspirational Thought: “Everyday is a battle to remain uplifted, try uplifting someone else and you’ll get there faster. Even if it’s as simple as smiling at someone or saying sincerely, “Have a blessed day!” -Janelle
Have a blessed day blog readers & thank you for checking in on me!
Saturday, March 5, 2011
Hello my fellow bloggers! 😀 Ok, well this past week has been a little stressful with missing my kids and battling insurance but I’ve also been gearing up with some positive reading and a positive attitude. Monday I will be admitted into Northwestern Memorial Hospital to start the 1st round of chemo. I will be released the next day but have to stay in a hotel close to the hospital for labs and in case I get a fever or major side effects. I know everything is going to be alright. I am ready to get this going. Thank you for the support & checking up on me.
*Inspirational thought: “Let love and faithfulness never leave you; bind them around your neck, write them on the tablet of your heart.(Pr. 3:3)”
Wednesday, March 9, 2011
First Round of Chemo…
Well, I started mobilization on Monday which included my first round of chemo. All went well, just a weird side effect of my nose burning, strange taste, and my lips were numb. I was discharged yesterday afternoon and have been resting and drinking lots of fluids. It hasn’t been too bad, just fighting some headaches but other than that I feel ok. We went and got some labs done today and will need to do more on Friday before I start the Neuopogen shots on Saturday.
Something exciting is that Fred & his wife Linda are here for a follow up with Dr. Burt. Fred is the 1st stem cell patient with NMO that contacted me and let me know about all of this. We are meeting later today.
I will give another update soon. Thank you for checking in on me.
**Inspirational Thought: “I forgive everyone for every “wrong” that I believe they have ever inflicted upon me. I forgive them for my own sake, that I may release the venom – the anger and resentment within myself – and regain my joy and serenity. I have compassion for everyone who has ever been a player upon the stage of my life.”
– Jonathan Lockwood Huie
Friday, March 11, 2011
Overwhelmed by Love:
It was an excellent day. I woke up feeling the best I have all week and Mike felt like it would be a good idea for me to get out today before we start the Neopogen shots tomorrow. Neopogen shots will stimulate my stem cells to grow so they can take them from me on the 17th. Once we start those, you get bone pain, flu like symptoms and are more susceptible to colds so you need to be careful with your diet and crowds.
So my Aunt Lynn & I went to Shedd Aquarium while poor Mike had to stay behind and work. Boo! The aquarium was awesome though! I LOVE marine life and I loved it there. We didn’t get to see everything but it was still incredible. Hopefully next time there’s an opportunity to go there, Mike can come AND the kids because I know they’d all love it too.
Then my Uncle Rob tells me that a close friend of ours, Kevin, contacted him to start another fundraiser for us. Kevin is serving our country right now in Afghanistan and is determined to help us! Amazing! I continue to feel blown away by the goodness of people.
For awhile now, I’ve really tried to focus on the good things I can learn from this illness because I’ve always been a believer that you can take something good from EVERY situation.
These past few years have been the hardest and most challenging years of my life. BUT I have never been so overwhelmed by the love and support we have received and I’m very grateful.
I’m not even half way through the battle of this stem cell but I know that once I reach April 6th, the hardest part will be over and then it will just be about getting better from there. I’m really looking forward to it. I’m REALLY looking forward to going home and being close to our kids. When the struggle of being away from them starts getting to me, I think about how much better I’ll be for them when this is all done.
Well, it’s been a long day and I’m pretty tired so I’ll sign off now. Thank you for checking in on me.
**Inspirational Thought**: If you ever wonder if there are still good people out there in this crazy world, trust me there are because I know a ton of them! Light always brightens the dark. :0)
Thursday, March 17, 2011
Well, we got the harvest completed today and it was a LONG day. First to IR for the insertion of the VAS CATH in my jugular vein, which took forever and then to the Blood Center for labs. Then we had to wait an 1hr 1/2 for those to come back, then we began the harvest. You are hooked up to this machine, where you have one line coming in and one line going out. Blood is going out, the stem cells are collected and the rest of your blood is returned. It’s really crazy and it took 6 hours.
They had to collect 2 million “newborn” stem cells and collected enough for 3 people. The nurses there were awesome and I happily got the CATH out tonight, there was a possibility I wouldn’t get it out until tomorrow. The Neupogen shots were NOT fun because they make you feel really bad. I’m happy to say that I already have some relief from the bone pain and don’t have to do anymore for now. In the meantime, we have a short break while they clean up the stem cells and freeze them.
But as you can imagine, Mike & I are exhausted from the day and my neck is sore. We will be resting for St. Patrick’s Day this year. The morning didn’t start out the way we hoped but all ended well and we’re grateful. Happy St. Patty’s Day & thanks for checking in on me!
**Inspirational Thought** “A cheerful heart is good medicine, but a crushed spirit dries up the bones. (Proverbs 17:22)”
Thursday, March 31, 2011
Admission into hospital…
Hello my friends,
Yesterday was another vas cath inserted into my jugular vain for plasma exchange and then a PICC line in my upper arm. All went well but I was very happy to get the cath out of my neck. I’m praying that’s the last time I ever have to have one again. The PICC line will remain until I get discharged from the hospital. It is so they don’t have to continue to give me IV’s. It’s a line that is long and runs above my heart. Kind of crazy!
Today I was admitted for the final and hardest of this journey. I will get a treatment of Rituxan then tomorrow I will begin 1 of 4 more rounds of chemo. I’m not looking forward to feeling crappy but I know everyday is another day closer to going home and I’m 1/2 way there. I also feel strong from my faith and wonderful support from friends and family like you PLUS people that don’t even know us, praying for us. I am filled with great hope and love.
They’re going to come in and begin Rituxan soon, so I better prepare myself. Another update coming soon, thanks for checking in on me! 🙂
(Inspirational thoughts are positive quotes to share with you but also as a reminder for me. If you think of a good one, please share it.)
**Inspirational thought** “Running and hiding from fear does not take you in the direction you need to go. Sometimes fear is a Divine warning that we need to listen to – but if the fear is halting your positive movement, it’s time to turn your focus. Start by being grateful to bring you back to a good place.”
Saturday, April 2, 2011
Day 1 & 2 of Chemo
Hello my blog friends,
Yesterday they started the first round of chemo and rabbit protein to suppress my immune system. I have tolerated it all well. Just get nauseous and tired here and there. They have meds that help with the nausea. This is the plan for today and everyday until Monday. I’m on day 15 today and counting down. My goal is to have my numbers up enough to get out of the hospital on April 16th.
I’m feeling a bit rough this morning with the nausea and dizziness so I’m going to keep this short. Thanks for checking up on me.
**Inspirational Thought shared to me by Ron & Jo Jadin**Isaiah 41:3, “For I am the Lord, your God, who is holding you by the right hand, and says to you, Do not fear; I will help you.”
Wednesday, April 6, 2011
Stem Cell Birthday
Hello my bloggers,
I finished off the final rounds of chemo and a treatment called Thymoglobulin – Rabbit yesterday. I was feeling pretty good in the morning and even did a few laps around the nurses stations. Stopped by the visitors area and got a nice look at Michigan Lake. We’re not allowed to leave the unit but we have some walking areas to get some exercises. But by early afternoon, the side effects of the chemo were kicking in and from that point on, I pretty much stayed in bed.
This morning around 10:30 central time, they brought in the newborn stem cells. We said a prayer over them with the Chaplin in my hospital room and it was a peaceful experience. Now they are giving me a couple doses of blood to jump start things.
You never can tell how you’re going to feel from one point to the next. More than anything, I’ve slept. The nurses had been great to make sure the other side effects are helped with meds. Again, I feel pretty good today. Mike feels he’s catching a cold so he had to check out of the hospital and into a hotel until some antibiotics kick in. Aunt Lynn is here and is going to hang with me for a little while longer. But I think later, I’ll try to walk around. I guess one of the side effects from the stem cells is that you smell like creamed corn. lol I can’t smell it on myself yet. Just a funny side note.
What’s next? Well, my immune system has to build back up so that I can leave the hospital and go back home. Until my numbers climb up and stay up, that will determine the length of stay. My goal is April 16th. 🙂 I’m feeling an enormous amount of support and prayers coming from out there and you’re greatly appreciated! Thank you for checking in on me.
**Inspirational Thought**Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead. (NIV) 1 Peter 1:3
Monday, April 11, 2011
Hello my friends,
Currently I am neutropenic and that means that my white blood cell count is extremely low, which is what was expected. I am on +5 after receiving my stem cells. I’ve had to have a few blood and platelet transfusions and that is expected too. I’m doing well but have been up and down with energy.
My spirits are pretty good but I am SO anxious to go home!
I began the Neupogen shots again today to stimulate more stem cells to grow. When my numbers, WBC, RBC and platelets are high enough that it is safe for me to leave, they will discharge me and I can hop on a plane and go home. I cannot wait for that day and every day that passes is another day closer.
I get to spend a couple days with my Aunt Lynn and Mike is staying in a hotel to get some uninterrupted work done. She stayed the night last night and will again tonight and it’s been fun. One of the blessings that this is in Illinois is that she and her family live here and it’s been wonderful to spend some time with them.
Well, again I’m going to keep this short because I have another platelet transfusion about to begin. Thanks for checking in on me. 🙂
**Inspirational thought** Psalm 139 says we are fearfully and wonderfully made – the human body is truly amazing creation when you study it. And, if your thoughts affect what you become, then it should be a top priority to think right thoughts. (From Joyce Meyer’s Everyday Life magazine)
Saturday, April 16, 2011
Good morning my friends,
It’s been a few days since I’ve posted because there were a few rough days. My platelets weren’t staying up to the level Dr. Burt likes so I had to get several platelet infusions. After getting several for some reason my body had an allergic reaction to it and we had to change things up a bit.
They started giving me “clean platelets” which means it is only platelets and no other blood items mixed in. I also had to have an Immune Globulin injection because the doctors believed I had antibodies attacking the platelets and that’s why my body wasn’t keeping them.
The injection has helped but I’m still not there yet. My numbers did go up this morning so hopefully we can go home tomorrow. The other issue that I’ve had this week is pain. Since I’ve been getting Neupogen shots that began on Monday, it creates bone pain and the headaches have been hard to deal with at times. They are giving me pain management to help with that.
Mike and I are very anxious to get home but we are almost there. We will be home very soon and are very excited about that. We have had excellent care here and there have been a few nurses that have stood out from the rest, especially one. I have been in and out of hospitals a lot for over 3 years and I had the BEST nurse any patient could want. Not only is she an excellent nurse but I really clicked with her as a person, so hopefully I gained a new friend.
I will never any of this medical team or this experience. The plan for the day is two more units of platelets and they’ll test me later to see where my levels are at. My other numbers like white blood cells did go up which is an excellent sign. Ok, going to sign off and I will keep you all posted on what’s next. Thank you for checking in on me. :0)
**Inspirational Thought** “The human spirit is your specifically human dimension and contains abilities other creatures do not have. Every human is spiritual; in fact, spirit is the essence of being human. You have a body that may become ill; you have a psyche that may become disturbed. But the spirit is what you are. It is your healthy core.”
Monday, April 18, 2011
Hello my friends,
Yesterday my numbers jumped up and Dr. Burt discharged me from the hospital. We got a flight back to Denver today and are back home. It feels SO good to be back in our home and around my babies! I have low energy so I have to take it easy. Mike’s Mom made one my favorite dishes she cooks, lasagna and a cake and our kids decorated with “Welcome Home” and “Ready to start a new beginning” signs. So sweet.
I’m am doing well and have gotten through the hardest part, now is the road to recovery. I will need to be careful because I have a brand new immune system and build up my stamina.
I will keep this one short too because I’m feeling pretty weak today, especially after traveling. The nurses from Women’s Prentice floor 15 called to check up on me today. Awesome team up there and they let me know I left my laptop charger there too. Bummers!! Have to figure that out. Anyway, going to take it easy and enjoy being home. I will update soon. Thank you for checking in on me.
**Inspirational Thought** Three small rules for living a happy life
1. Start each day with a grateful heart.
2. Focus on the positive aspects of every person you encounter.
3. End each day with a grateful heart.
Tuesday, April 26, 2011
Hello my friends,
I haven’t posted for a bit for a couple reasons: I left my computer charger at the hospital and I’ve had a lot of ups and downs. I’m trying to take it easy as much as I can do with kids. Everyone is helping out but I’m still Mom.
I already have less pain then I have since I got sick which is wonderful and am able to take less pain meds. My stamina is building up. I’ve just been dealing with other symptoms from going through so much with the treatments but that will all pass with time. Every time you go through surgery or something major, it just takes time to get your body well.
Well, I just wanted to give a quick update. Thanks for checking in on me. 😀
**Inspirational Thought** “Hope is like the sun, which, as we journey toward it, casts the shadow of our burden behind us.” -Samuel Smiles
Saturday, July 9, 2011
Hi my friends,
Too much time has passed since I updated my blog. Being back home has been wonderful but challenging. I had a lot to catch up on since being home and it was a bit overwhelming.
When I got home I had several canker sores develop in my mouth and since my immune system was down, it was hard to fight them. After a few weeks of constant salt water rinses and some medication, they finally went away.
My mind wanted to be completely well and do several things but my body couldn’t yet. Also, because of the chemo and my age, I have been going through menopause early. All my symptoms seem to be subsiding and I’ve felt more balanced now. I go in to get my blood work done weekly so that the doctors in Chicago can check on my progress. All my numbers continue to go up.
Recently, my white blood cells have dropped and Dr. Burt is having me discontinue a couple of the medications because one of the side effects are immune suppression.
I have been taking several natural supplements that I believe help me.
I think I’m going to be able to take down my pain med dosage again soon which is exciting. I have been trying to do some things that I haven’t been able to do since 2007. I’ve danced and walked for several blocks without spasms and the electric current feeling coming into my back.
My outlook is really positive and I can’t wait to do more activities. I can lift our 3 year old and hold her for a longer period of time. All of this makes me want to reach out and help others with autoimmune issues. It seems like these days, there is an autoimmune epidemic and I wonder what we’re all doing different that is causing this and how we can prevent it. One thing I’ve learned through all this is how important supplements are especially ones like probiotic to keep our digestive systems in good working order and prevent intestinal imbalances that I believe lead to other illnesses.
We went to watch fireworks and haven’t gone in years and the sight brought tears to my eyes. I thought about how much my family and I have been through and getting to this point and felt so grateful!
I will continue my recovery for a long time and will know at the 2 year point where I will be. I’m really hoping that I will be able to completely get off pain medication and Dr. Burt was really hopeful. Dr. Jain said the day I was released from the hospital that they have had excellent results from this with Devics. It’s like they’ve reprogrammed my body and we’re all looking forward to my future.
Thank you for your support and prayers and thank you for checking in on me.
**Inspirational thoughts** “You have to hurt in order to know. Fall in order to grow. Lose in order to gain. Because most of life’s lessons are learned in pain.”
“Open your eyes – to the beauty around you. Open your mind – to the wonders of life. Open your heart – to those who love you. And always – be true to yourself.”
-END OF OLD BLOG-
I believe this web site has some real great information for everyone. “Billy T-T-T-T-Today, Junior” by Billy Madison.
Thank you so much! I really appreciate that! 😀 (lol Billy Madison – funny movie!)
Hi Jay, thank you for your comments. The first thing is to decide what type of blog you want. Self-hosted or wordpress.com. Here’s a link to some great info on getting started: http://lifepassion.net/wordpresscom-vs-self-hosted-wordpress-blogs/
I had to research first to understand and then I write about what I’m passionate about. You can choose a specific subject or write about whatever inspires you. Hope this helps. Good luck to you! :o)
You will be my role models. Thank you to the write-up
hi my wife has nmo since 2013 and still trying to find the best treatment until i found this stem cells therapy and accidentally read your great story and wonder how you doing right now ? does it help you? are you recommend this kind of therapy. please share if you have time i really appreciated it. thanks
Hi Andy, please forgive me for taking so long to respond to your comment. It has been over 3 years since I had my stem cell and I am doing really well. I tell other NMO patients that Dr. Burt’s office refers to me – I won’t tell someone that they should or shouldn’t do the same because it is a very personal decision. It is not an easy journey but I would do it again. For my situation, it was very aggressive and I needed treatment every 6-8 weeks and the several treatments I tried were not succeeding. If you and your wife would like more information, the DIAD link is on my stem cell page. Best wishes to you both!
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