Just waking up from my 3rd spinal infusion and feeling darn good! No headache or leg aches, but i still have to take it easy today. We are leaving a few days early on July 6th- if all goes well. We need lots of prayers because we are flying on Buddy passes from my sister Mindee’s friend Roxanne who works for United- and they are standby tickets, but also business class if there’s room and at a reduced rate, but all flights out of Shanghai nonstop to Chicago are overbooked. That leaves us in limbo so we may have to fly to San Fransisco and then catch a domestic flight to Chi-town. i am not stressed- there are so many things in life that are much worse than that- we’ll make it home- just not sure how or via which city!
I wrote about all of the English we see each day if we go out and it is so strange. During the first week we were here the translators sent us to a restaurant for lunch called Tacos- well for those of you that know us this is hands down our favorite cuisine, but we forgot we were in China. It was an infusion restaurant which means they take all different types of cuisine and meld it into one dish. So the chicken tacos i got were part Mexican and Chinese and delicious and then they threw some french fries on the plate as well. Noah had pizza- plain- no infusion for him. So the restaurant was really nice and over looking one of many, many plazas with a huge fountain. The staff wore t-shirts that said on the back, “we strive to infuse the best of the best,” the menu had English as well as Chinese, the name of the restaurant was Tacos, but the waiter spoke no English and we could not get Noah a Sprite- even after they sent over 2 other servers and the manager. They do not use ice here either so he had warm water and plain pizza!
I am a keen observer and read all the t-shirts i can of the people we see because they are all in English and that particular day i saw several that seemed to be speaking to me:
Live, Laugh, Love
Strive to do your best, ALWAYS
Love with all your heart
No painting – no gaining (my personal favorite that got lost in translation)
But when you are walking through the mall or on the streets and cannot communicate with this different, very interesting culture it seems there is still something that someone is wanting to say to me. So i know there is a presence here that is loving me through this and all the prayers that are helping me get up each day to receive the treatments i so desperately need. That force are the prayers being said by all of you and Jesus and i thank you all for caring enough to keep pluggin’ along with me as i try to create a better quality of life.
As we walked into the hospital that day i saw my favorite t-shirt, We’re all in this together- it spoke volumes and brought me to tears in knowing how many people contributed to get me here and how their ongoing support allows me to search for better health.
Thank you all from the bottom of my heart!
June 29th, 2010
We are on the countdown and we have 11 days to go- which translates to 2 spinals, 1 IV, 6 sessions with the acupuncturist, 5 PT sessions, and 4 massages- one long ass flight a three hour drive home and then, then we will be sleeping in our own beds. So much to do and 11 days to do it!
We have found some time to venture out, have dinner and see some of the city at night. This place is like New York on steroids! There are more massive television screens then we could count and every tall building has lights running up and down it- total eye candy! Unfortunately they also like to incorporate different textures in their plazas. So when Noah and i exited the mall which by the way had every top named designer all in one spot- from Versace, Louis Vuitton, Armani, Swartzsky to Gucci, Hilfiger and Chanel- and the mall went on for 6 stories and the reason we were there was to eat at Bella Napoli. Walking through this mall i was a little nervous that this restaurant may cost a little more then we were willing to spend- so when they had a menu outside to look at i was relieved- just about as much as when i saw the prices. We had a nice dinner- and then heading out to the plaza- we had entered on the other side of the mall- who knew they would try to use different tiles to line the beautiful area that was filled with lights and a giant fountain. So yes- for every flat stone there was a raised textured stone next to it. Well needless to say (and my dad knows what is coming because he says we both can trip over a nickel) i took 2 steps hit the tile and did the now infamous tuck and roll and landed sitting Indian style on the pavement in front of the big fountain facing all the lights and completely unscathed from the apparent flip i had just performed. I say performed because Noah’s response was, “oh my gosh mom that was awesome!” Well it was and all i could do was thank God i was in one piece and a nice Chinese man came over and he and Noah helped me up and we were on our way.
So not only were these lights in front of the Deji Plaza, but after we were safely in a cab and on our way home we went through intersection after intersection that had more TV screens and lights and fountains- we were astounded – and in awe.
My treatments are going well- we are homesick and a little lonely. We got 2 new families in the last day- one from Canada and one from Sweden. So we are looking forward to learning more about our new friends- Noah especially. We have made good friends with the Australian couple and had dinner out with them tonight at an Aussie inspired restaurant. We all had Aussie steaks that were phenomenal and saw more English speaking people in that place then i had ever seen in all of China. Then Jeff, our resident Aussie, explained that it is kinda like a China town in New York for westerners, but at first i was so stunned to actually hear people speaking English- weird hah?
So although we made it down to the big city lights and saw what more Nanjing had to offer because it was really spectacular- but did not compare to the street lights on our street or my parent’s porch light which was always kept on ’til we were i came home. I think we are a little more homesick this time around and stir crazy too. But we are holding on to our faith and the hope that was instilled in us by all of our family and friends. We love you guys- and thank you from the bottom of our hearts!!
June 25th, 2010
We are in Nanjing, China and what a trip to get here. We took a flight to San Fran and then connected to a direct flight to Shanghai. So we are 4 hours into our 13 hour flight and Noah looks over at me and says, “what do you think- about 5 hours left?” It was all i could do to not laugh or cry because i could have easily done either. We only had about 3 hours of sleep the night before and we were both a bit delirious. So i calmly told him we still had 9 hours left and in all seriousness he looks at me and says, “should we just parachute out?” So needless to say we spent 2 nights in Shanghai- and all we did was sleep. The hospital picked us up at noon and we were off for a 3 hour drive to Nanjing.
This city is much different then Qingdao- where we were last year. There are so many people here and we are only 15 minutes from downtown. It is a very old city- 2000 years old and they are celebrating the founding of the city starting this weekend. WE are told that the holiday runs for 5 days and most don’t work, but we were assured there would be staff here in the hospital. I guess they just party in the streets for 5 days. Not sure how they will fit everyone because the streets are so narrow and there are soooo many people here. So party on Nanjing- i guess we’ll be partyin’ too.
I successfully made it through my first IV and spinal- yep i made it laying on my back for 6 hours. but it almost didn’t happen. My spine is tricky and they had me on my side in the fetal position for an hour while they kept feeling my spine and there were about 3 doctors and 3 nurses all talking and of course i don’t know what they are saying- but the head doctor tells me they have to call the head head doctor because they cant find the right spot. So about 10 minutes later i hear another voice because i am facing the opposite direction in the fetal position and this guy feels my spine once- they numb me up- shoot some valium in my IV and then a 5 inch needle into my spine and the stem cells are where they need to be- in the spinal fluid. At one point, when they were all just talking and i am laying there thinking, ”what the hell i am doin in this place?” But i quickly remembered what the benefits are and i pictured my self walking into UT in August healthier and stronger. Then that other part of me was still pretty scared. The doctors here are less fluent in English so they were not telling me much- while i was laying all tucked in- i just wanted my mom! I think the fetal position just does that to a person. Same thing happened when i was given an epidural for Noah’s c-section and was in the fetal position, but luckliy my mom was right there- trying to keep me in the fetal position, because when you are 9 months pregnant that position is not one you can nor want to be in.
So we are happy to be here and getting the treatment i need to stay strong. We are both homesick though- but we will be home soon enough and I’ve got more to do here.
So we obviously did not parachute out of the plane or the 17th floor of this hospital when i was left alone in the operating room. No we’re coming home safe because i am going to make sure we have plenty of sleep before we board that plane.
Our love to all! We miss you and thank you for everything!
June 17th, 2010
It’s been several months since i have updated this blog- and it is time. i have received tremendous results from the stem cell therapy i received in June of 2009 in Qingdao, China. My speech is still much clearer and my students tell me this on a regular basis. My energy level is better as well- which allows me to have more of a life outside of my job- which is priceless! i can roll over and get comfortable in bed with much more ease, getting in and out of the shower is easier, putting socks and shoes on is a much easier task, i am also able to stomp snow off my shoes which was impossible last year because i had no strength in my legs. But the most important change has been my attitude. China gave me the hope that enabled me to be more positive about my future and be a better mother, teacher and friend. i have been able to be more involved with things i love- i have just been happier. Modern medicine doesnt offer me that- no pill gives you hope and the feeling of peace that i have today. My trip to China, prayers, and support from the thousands of people that help me get there gave me more then i could have ever imagined- and that is why we are traveling back- half way around the world to continue to fight to be better, stay better and live my life the way it should be lived- with hope for the future.
Noah and i have been so blessed to have been given so much- from so many people and remain confident that our second trip will prove to be a positive step toward a better quality of life for us both.
March 1st, 2010
We are back into the swing of things as Noah has started school and our lives have continued right where we left off back on June 5. And although we are back in the routine of school and homework and housework and trips to the grocery store and my many doctor appointments- we are different- both of us are changed.
My speech is unbelievably better- so much so that people are astounded at how good i sound- but Noah and aren’t. My chiropractor, who i have seen every week for the past 3 years, is amazed at how well my muscles are responding to her adjustments and how little adjusting she has to do- but Noah and I are not. My mom and several colleagues have told me that i seem to be walking better, that i walk more sure footed and with a straighter posture. I have more energy and am making it through my days and nights with more energy. And in the mornings as we head to the car and i maneuver over the curb without any help from Noah- we are not amazed- because we know in our hearts that the trip we embarked on back on June 6th was God’s will for our lives. We knew every time we were unsure of what we were facing- and wanted to come home that God was there holding us in the palm of his hand.
I have said this before- our trip to China will be the hardest and the best thing we will ever do- and now, being home and back to our life- we realize that more then ever. We were given a gift that most will never receive, because our experience in China was something that we will forever cherish- for so many reasons. Yes- the best thing that is happening is i am getting better, and we are so thankful to the many nurses and doctors and Beike staff that made that possible- but we owe it to God- and we know that now. We knew that He was not going to allow us to travel all that way, with so much hope in our hearts and not show us the love He has for us by not only healing some of my muscles, but the healing our hearts.
No one can really know what it has been like for Noah and i to live the life we were dealt- but that doesn’t matter anymore- it used to- we used to feel like we got the short end of the stick withno man in our home to be both father and husband- and then being diagnosed with a disease that was making it hard for me to be the strong parent that Noah needed. But now that we are here- we are back in our lives- and we feel the presence of God’s miracles working not only in our lives, but in the lives of all of the beautiful people we met in China- we know that not only are we blessed, but God’s will is at work in our lives because we have opened our hearts to it. And we now know that- we are no longer the family that doesn’t have what we think we need- we have more- so much more- and it is because allowed God to work in our lives and journey to China.
This realization did not happen over night and when we were in China there were so many times i questioned what the i had gotten myself into, but it has become crystal clear to me now. And none of it would have been possible if the people in our lives wouldnt have wanted what we wanted- a better quality of life- and a renewed attitude.
This morning on the way to school i told Noah what my heart had been feeling since we returned home- i had not verbalized it to anyone, but this morning i told him what was tucked deep inside my heart. I explained that i had this feeling, this ache, a realization that what we experienced was so monumental in our lives and how i knew we would most likely never see anyone of those people again- and certainly not all in one place. And we would never have the feelings we had when we were there. It is a sadness of sorts because it was such a beautiful experience- the sharing of lives and hope with so many wonderful families with the same dreams of a better life for themselves and their loved one. And i told him that little part of my heart that remembers it all is always there- i always feel it and it brings me joy at times and sometimes sadness. I miss everyone that i met on the part of my journey that landed me in Qingdao, China- and i will have those memories tucked deep in my heart forever. After i was done telling Noah this i looked at him and with tears in his eyes he said, “Mom, i feel exactly the same way.”
September 3rd, 2009
Well, it has been 2 months since my first IV infusion of stem cells in Qingdao, China. The doctors say you should start seeing results in 2 to 6 months and of course i am patiently waiting for something to happen. I will say that EVERYONE i have talked to agrees that my speech is better and i have noticed that i am able to talk for longer periods of time in the classroom without having to stop and take a drink or a rest. Last year i would choke easily when speaking and i would have to take breaks to have a drink of water or swallow and regroup. This year i am able to speak for much longer and do not feel the strain in my throat. This is a HUGE change that i desperately needed and am so thankful for. I need my voice to teach and to mother Noah- obviously, but when it was uncomfortable to speak, it made it hard to fully express myself- which is definitely frustrating. So although i have not felt much of a change in my legs- i have in my throat and i am so very thankful. The prayers continue to work.
August 14th, 2009
The final 2 legs of our trip went according to plan- we easily made our final flight from Shanghai to Chicago in business class, which was such a nice way to end our very long journey abroad. My Uncle Johnnie met us at the gate and drove us to Dekalb where we met my mom and sister Mindee. We knew we missed home, but realized just how much once we were back safely, snuggled in our own new beds and freshly painted home. While we were gone we had a few repairs that were made- a new ceiling and pipes due to a leak a few months ago, and washer and dryer hookups added to the first floor kitchen so I would no longer have to make the trek to my basement to do laundry. What we didn’t know was that my brother in-law was going to put a fresh coat of paint in both bedrooms, the living room, the kitchen and all of the beautiful white trim. In addition my mom, Mindee and my best friends Jean and MaryJo came in to clean my beautiful hardwoods, dust, clean windows-basically gave my house a complete floor to ceiling, top to bottom overhaul. So imagine our surprise as we pulled up to our home. Along with my best friend Becky being there with Camey, we walked into our beautiful home and were stunned and so happy to be here. How thankful we are to all that came over to help when they could- my sister in-law Tammy was here as well as my sister Michele, my Uncle Tom, and our friend Eileen. My friend Andy did all the work on the new ceiling and it looks amazing- he even put in can lighting! It is so nice to look up and not see water stains and peeling paint. Our thanks to all who helped make our home look so wonderful upon our arrival.
We have been home since Tuesday at 10:30pm- which made our journey home about 26 hours- where we slept all of 4. The night before we left I slept maybe 4 hours and the night before that maybe 6. So needless to say I was running on empty and have had a very hard time getting back to feeling normal. They say it will take 1 day for every hour of the time difference- so that would be 13 days and we are on day 5 and I am already sick of feeling so yucky! Noah has bounced back a little better then I have- but it seems like every other day we wake up with a sore throat and feeling like we have a cold- then we sleep 10 hours and feel better and then sleep 5 hours and feel worse. We have our days and nights mixed up and have met in the hallway wide awake at 2 am more then once. Oh well- it will all work itself out and I am just thankful I have a few weeks before I start school again on August 3.
So as far as my progress physically- right now I cannot tell because my body is still adjusting, but I do know that the stem cells are in my system along with the growth hormone and now we wait. The next six months will show us if they are growing and helping to replace the cells that have died in my system which are causing the symptoms that I am experiencing. I guess we still need prayers. This treatment has worked for many people- it gave them back their balance, better speech and energy-which is one of my biggest struggles. There is nothing worse then having no energy to do anything. So if I have the slightest improvement in any of those areas- I will be happy!
So the blog will continue so I can keep not only my friends and family updated on my progress, but anyone else who might be thinking of heading to China. The unfortunate thing is- I may have to go back there- and I knew this- and as hard as this trip was- I would do it again next week if it meant I could continue to live the life I created for us. I want to mother my son, teach, and continue to live in my home, and someday be able to walk my dog again. So my prayer is asking God to give me back some of what I lost and if not- to give me the strength to deal with whatever He has in store for us. I am leaving it up to Him- today anyway- because many days I want it my way- but today I am putting my life in His hands.
July 13th, 2009
My father sat in his living room last week and told my sister Mindee that if someone would have told him a year ago that half of his family would be in China during the 3rd week in June he would have laughed. But they sat, wondering if my mom and sister had made it and worried about Noah and I. China is not the place you think of when someone is ill and needing more answers then they are getting from their DR’s. We think of the Mayo Clinic, and not China. It is certainly off the beaten path and a road that few have traveled. We are the minority, the weary “mum” of a beautiful 2 year old boy named Cody from the UK. The father who came alone with Ella who has 3 older siblings at home in Iowa is on the same journey of hope that Noah and I came in search of. Or there is Michael who is 37 and here with his mom Debbie, blind from a bike accident or Kit who is paralyzed from a drunk driver who is here with both of his parents. No matter who makes up the family dynamic- they are here, we are here, with so many loved ones left behind in search of hope. As we have shared our stories we have the same sentiment as 3 of families leave tomorrow and another 2 on Wednesday- “no regrets!” We would all do it again because- yes- this journey is about hope, but it is also about faith and love. We would go to the ends of the earth to help ourselves and the people we love more then anyone else in this world have a better quality of life. So although Robert Frost’s poem is appropriate for me to say to all of you- to the people I leave behind- that road became a beautiful path when I joined-Cody and Stacey, and Don and Ella, and Michael and Debbie and Autumn and Kathy and Arjay and Angel and the many others who have not only helped me down the path, but are giving me the courage to keep on the path that only we have traveled together. And when the next opportunity comes for me to seek “the road less traveled” what will I do? With hope in my heart I will have “took the one less traveled by, And that has made all the difference.” And when I step on that path all my friends here from China will be there too.
| TWO roads diverged in a yellow wood, |
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| And sorry I could not travel both |
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| And be one traveler, long I stood |
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| And looked down one as far as I could |
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| To where it bent in the undergrowth; |
5 |
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| Then took the other, as just as fair, |
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| And having perhaps the better claim |
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| Because it was grassy and wanted wear; |
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| Though as for that, the passing there |
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| Had worn them really about the same, |
10 |
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| And both that morning equally lay |
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| In leaves no step had trodden black. |
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| Oh, I marked the first for another day! |
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| Yet knowing how way leads on to way |
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| I doubted if I should ever come back. |
15 |
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| I shall be telling this with a sigh |
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| Somewhere ages and ages hence: |
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| Two roads diverged in a wood, and I, |
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| I took the one less traveled by, |
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| And that has made all the difference. |
20 |
July 7th, 2009
So once again song lyrics come into play here in China from Toto- one of my all time favorite 80′s band, but so appropriate for the journey we are on and the one I will embark once I come home and put all of the knowledge I have been taught from this beautiful culture.
On Thursday during my PT with Jason I was trying to do the hardest thing I have done in therapy which is getting up from a step that is about 18-20 inches off the ground. This is very difficult for me because I have no strength in the my thighs. I have done it once or twice per PT session and today I was a little worn out and when I went to try my second time I was off the step and couldn’t get up and my knee buckled, but Jason was there to catch me- but in that split second I felt the same feeling I felt a couple of years ago when I fell and my knee buckled and no one was there to pick me up and I ended up in a wheelchair for the next 3 weeks. So as he grabbed me and pulled me up, I was so very thankful to him- and as I looked in his eyes he said, “it’s ok, ok, ok.” Jason knows very little English, but he knows- “pain, a little bit more everyday, where’s baby, baby good, baby strong, Obama, Michael Jackson, Bruce Lee, you stronger, tired, all done- among a few other words. I welled up with tears (no surprise, right?) and he said, “all done!” and walked me back to my room and came in and sat down. He has a little computer about as small as a phone that he can write something in Chinese and then shows me in English. That day once I got to my room- I started crying and he was consoling me and even though I could not explain to him why, he knew. He started typing and then showed me his little computer and I saw- “hold the line.” Something that my father would say although in his words it be, “bump and grind” or “when you go to the altar, bring back the fire and not the ashes,” among many other Tonyisms. But I knew that he knew what I was feeling and we know each other in a way I have never known anyone else. He will be the person I miss the most- and I want him to know that, so we are thinking of what we can give him to show our appreciation for helpiing me to see my potential- helping me to do things I never thought I would do- the whole time cheering me on in his own special way.
Later that evening I talked Noah into going to a restaurant called, Yo Yo Hot Pots- a place where the menu is in tanks because it consists of all fresh fish and they have an area with fresh veggies and noodles and beef and poultry, but to order you walk with the waiter and point at what you want. A few people here had gone last week when I wasn’t able and I had not been out for a few days and knew with my spinal on Friday I would not be able to leave again until Sunday- so we we’re off with the offer that if he didn’t like it he could order a pizza when we got back. As we were heading to the elevator we saw Jason and asked him to come with us- and he did! What an experience- I only recognized a few things: live lobster, prawns, noodles, and very thinly sliced beef. Jason ordered and we sat down where we each had our own “hot pot” with boiling chicken broth. First they brought out a clam for each of our pots and then the food came. Jason had us open our pots and started putting things in for us- the we covered the pot. They also brought a bowl of very watered down peanut sauce and hot red peppers, cilantro, garlic and scallions to add to the sauce which I gladly did. Then we watched Jason take out the different meats and veggies and put into the sauce and eat. I did pretty well with the chopsticks for about the first 10 minutes and then we asked for a fork. The food was good and fresh, but bland. At the end of the meal you then took your spoon and drank the broth in the hot pot. Noah ate the beef and was still hungry when we got back and so he had a pizza. Jason was such a gentlemen making sure I had his arm the whole time we walked in and out and making sure I was comfortable. Normally when you have someone join you for dinner it is a translator so they can help order, but our Jason was the perfect dining companion!
My spinal was on Friday- as I sit here today it is Saturday at 12noon. Dr. Chen was the DR on duty as Dr. Tony #2 was at a seminar. It took him several tries, but he got it! My back is very sore today, but no headache or leg cramps- yet so I am praying I will feel better tomorrow for the zoo! Noah is off with yet another new family showing them around the Jima Market- he is the official tour guide of the Jima!
We are counting down the days and pouring on the prayers for all to go well- my last IV infusion is Monday and we leave Tuesday!
Our love and prayers go out to our family and friends as we are taking Jason’s and my Dad’s advice and “holding the line” here in Qingdao, China.
July 4th, 2009
We are officially leaving Qingdao on July 7th instead of the 9th! We have had all of my treatments moved up. I will be receiving a total of 7 infusions- I have already had 5 as of Monday which was an IV. Friday July 3rd will be my last spinal and Monday July 6th will be my last IV and we fly out of Qingdao on Tuesday July 7th at 10:15am to Shanghai where we hop on a United flight at 3:55pm headed for O’Hare and will arrive- get this at 4:16pm July 7th! So on the return trip we lose no time, but we gain jet-lag you can be sure of that! Now, we are flying on stand-by tickets so we need lots of prayers to get us on that flight! We are very excited to be coming home a few days early as I will have about 3 weeks left before I head back to school. Noah keeps reminding me that he will have 6 weeks until he goes back to Seton for his last year- he will be in 8th grade. He has grown up here in China, both mentally and physically. He was definitely a favorite of many- and I am proud to call him my son- and am hoping I can get him out of here- because many would like to take him home with them- they tell me he’s a keeper- but I already knew that.
Will post more soon- our love to all!
July 1st, 2009
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