Karing 4 Kerri

Heading Back

Sat, 26 May 2012 14:10:00 +0000

We have very exciting news to share with everyone: Kerri will be admitted to Hospital San Jose on June 17th! The whole family is so relieved to have the date set and to know Kerri will be under the amazing Dr. Cantu’s care once again in just a few short weeks. As luck would have it, Kerri’s friend, Jessica, will also be down in Monterrey at the same time, and the girls are looking forward to being reunited. Tomorrow, the entire family is going to a barbeque to meet a few other RSD families in the area. We are all excited for the chance to get to meet in person other RSD angels Kerri has previously only had the chance to talk to online. As we count down the days, we would like to take the time to thank all of you for your generous outpouring of support over the last few weeks. Thanks to you, Kerri has a chance of feeling better and we all have a renewed sense of hope!

A Special Update

Sun, 06 May 2012 19:35:00 +0000

Hello everyone! Sorry it has been so long since we updated the blog, but we have been playing the wait and see game over the past few months. I am having difficulty with eating again. My whole GI tract is very sensitive, and eating and drinking can be very painful experiences. Since February, I have just been eating the little bit that I can handle each day. Some days are better, and some days are worse. I am also back in the wheelchair full-time because I pinched my sciatic nerve in my left leg. As a result, I have pins and needles, dulled sensation, shooting pains, and difficulty with movement from my hip all the way down to my foot. I have experienced similar problems in the past such as the GI sensitivity and pinched nerves, and I know that ketamine is the answer to calming everything down. I have decided to go through with getting a port placed and receiving the high dose ketamine boosters in Mexico. We are still waiting to hear when I can go, but we are hoping to go in the middle of June. I will be finishing up my library classes this week, and then I will have a few weeks to relax and prepare for my next Mexican adventure.

I wanted to share a very special story with everyone today. Back in the fall, I made a friend, James, at the grocery store. He is a vegan like me and has always been so sweet and helpful when I check out. He always asks how I am feeling and tells me he is praying for me all the time. We recently had a Whole Foods store open, and now my good friend is working there! Whenever I see him, he brightens my day with a handshake or a hug and a wonderful smile. Yesterday, I went with my family to have lunch at Whole Foods and to pick up some groceries. When we went to check out, there was James at the counter smiling. He told me to hang on a minute, and the next thing I know he is bringing me a beautiful bouquet of flowers! As we were checking out, he asked how I am feeling, and we let him know of our plans to travel back to Mexico. He said he has been praying for me. I am so fortunate to have so many kind and special people in my life helping me along the way. Waiting for treatment can be difficult, but all the random acts of kindness help me get through. Thank you everyone! We will update the blog again once arrangements are made for me in Mexico.

-Kerri

P.S. My good friend, Jessica Stevens, has been in the news recently spreading awarness of RSD and the Ketamine Coma. She even got to meet the First Lady, Michelle Obama! Click on the Links and Resources section to see her videos.

Happy New Year!

Mon, 02 Jan 2012 02:05:00 +0000

We have a very special story to share with all of you. On Christmas morning, we were surprised to find a jar of coins on the front step with a book and note attached. The book is called “Christmas Jars,” and the note read, “Kerri, God bless you this Christmas time and always.” As you can guess, we were all very surprised, and this random act of kindness moved us to tears. We would like to take this opportunity to thank Kerri’s anonymous Christmas angel for their incredible generosity. Words cannot express how grateful we are for your compassion and consideration. You made our Christmas very special!

As we ring in the new year, we would like to take a moment to thank all of you for your generous support over the years. Kerri’s progress would not have been possible without you! We will continue to update over the next few weeks as Kerri makes her decision on which treatment path to follow.

May you all have a happy, healthy, and joyous 2012!

-The Jarvis family

Happy Holidays Everyone!

Thu, 08 Dec 2011 03:20:00 +0000

I hope you are all enjoying the holiday season as much as I am. Christmas music has been playing constantly here at the Jarvis house, and Boomer has been finding all the decorations to be very exciting.

It has been a bit of an eventful week. On Monday I had an office visit with Dr. Schwartzman, my neurologist in Philadelphia. We had scheduled this appointment back in March for the purpose of routine follow up. However, it turned out to be a much needed appointment because of the RSD flare-up I've been in since August. As always, I was anxious to hear what Dr. S. had to say about treatment options, since he is the "RSD guru." He found my symptoms at this point to be quite troublesome, and at first recommended the 5 day ICU inpatient high dose ketamine infusion at Hahnemann Hospital. Because of my inability to tolerate IV's at this point, this would also most likely involve surgical implantation of a medical port. The problem with this option is it's not covered by our medical insurance plan and would cost approximately $30,000. When Dr. S. realized our insurance wouldn't cover the procedure, we discussed traveling back to Monterrey, Mexico, to obtain comparable treatment at a much lower price. Given the price difference and the phenomenal quality of care I've received during my previous 2 visits to Hospital San Jose, we're thinking this may be the best option if I decide this is the treatment route I need to take. I'm not quite ready to make these plans yet because I want to try a more non-invasive plan for now. Dr. S. agreed a trial with pool physical therapy 3X a week for a month is the next step to take before making any big decisions.

I was extremely fortunate with the timing of all of this. We came home from the appointment in Philly Monday morning and called the rehab department at Chester County Hospital (where I went for pool therapy after the coma), and I was evaluated for pool therapy later that same afternoon. It was like I never left - becoming re-acquainted with the wonderful staff there. I had my 1st therapy session today and I'm hoping for the best!

I would like to share our holiday picture with everyone. We always joke that this is the year we may have to photoshop rambunctious Hershey into the picture - well, 2011 is that year! He was just too excited to stay still enough for a festive family photo. Please continue to keep all those people bravely dealing with RSD in your thoughts and prayers. We'll update everyone again when we talk to Dr.Schwartzman in a month. Wishing you all a wonderful holiday season. Thanks for all of your love and support this year.

Kerri

A new puppy, room, and path forward

Fri, 28 Oct 2011 10:15:00 +0000

Hello everyone! Sorry for the delay in updating the blog, but a lot has happened in the past few months since my most recent trip to Monterrey. When I returned from my surgery and big boosters, I was feeling the best I have ever felt since having RSD, and I had just had surgery for crying out loud! This was truly a miracle we could have only dreamed of! I owe it all to Dr. Cantu and my wonderful medical team at San Jose, and of course my family and friends for making another trip of healing possible for me.

During this time of feeling on top of the world, the Jarvis family welcomed in a Golden Retriever puppy named Boomer who was a special gift from my Nana and Pop-Pop. Since our other golden, Moe, died in 2007, we have wanted to get another dog but knew we had to wait until all of my Mexico trips were over. Little Boomer makes me smile every single day, and I feel so lucky to have him! I know the rest of the family, including our chocolate lab, Hershey, feels the same!

Another dream I was able to realize was going to a Taylor Swift concert. When I was in Mexico the first time, the only thing I wanted to listen to was Taylor Swift music during those rough couple of weeks after my coma, so when the tickets went on sale earlier in the year, my mom bought us handicap accessible seats to put away for my birthday. Months ago, it was only a far off dream that I would be well enough to attend, but we knew this surgery was coming up and came along with the big boosters. As many of you know, RSD can cause extreme sensitivity to vibrations that translate in a patient's body as pain signals. Concerts are made up of many many of those vibrations, so this goes to show you how well I was doing when I was able to actually go! I packaged myself up in my wheelchair with pillows, put in my earplugs, took some of my break through pain medication, and was the happiest girl in the world. I was so happy that I was fortunate enough to experience this special moment with my mom at this amazing concert that I couldn’t have imagined myself being able to go to in a million years that I started to cry. If you know my mom, you know she started to cry too! She cried during "TheDevil Wears Prada" so of course she was crying! I was so lucky to have these incredible 2 weeks where I was feeling so good, and I would like to take a moment to say thank you to all of you who made it possible!

As you probably noticed, I said 2 weeks, so the story is about to change. Don't worry, because it's not all bad. As part of the protocol for having surgery with ketamine, you have to go for boosters more frequently afterward to keep you feeling good. When I went for my first round of boosters in Philly, the nurses had some difficulties getting my vein. I really only have one good vein to get anymore, and it seems for now, it's seen better days. It took 5 tries to get a vein, and with RSD, that is not good. My whole body went into spasms, and to an outsider it looked like I was having a seizure. This is the way my RSD reacts when it's trying to say "Okay! Enough already! I've had enough and I'm done!". After a little while, my body calmed down, and I was able to receive the treatments for the 2 days. Unfortunately, even after having the 2 days of treatments I was not only worse off than before I walked in the door, but I was feeling the worst I had felt since my coma.

Different treatment options have been discussed. One option is to simply try again and go for a booster, but the bruising hasn't completely healed from the last time, and it's been 2 months. I don't think my veins and the rest of my body are ready to try again right now. Another option is to have a port put in, but after taking so much care to ensure the last surgery would go well, why would I want to rush into this surgery? I have decided to go with another option. I have added a wonderful pain management doctor named Dr. Lin to my medical team. I am trying a couple different medications to see if we can get the pain levels under control enough to return to heated pool therapy. Right now, I feel that I am still too sensitive and the water could do more harm than good. It's taken a couple of weeks, but I feel that I am headed in the right direction with the medications. With some more time and a few more adjustments with the medications, I hope to get back to pool therapy very soon.

A few changes have been happening at the Jarvis household. Since we moved here, I have always had the bigger room, and Erin has had the small room. Our plan was to switch rooms when I went off to grad school in a few months. With the turn of recent events and a slight change of heart, I decided I didn't want to go away to school anymore because I'm not sure I could physically handle it again. Just because I changed my mind about that, didn't mean it would be fair not to give my little sis a change with the bigger bedroom. After talking it over with the family, we decided it would probably be best if we were going to be playing musical rooms to give me a room on the first floor so I didn't ever have to worry about not being able to make it up the stairs. My family was generous enough to give up the family room for me, which has been my temporary room on and off over the past years. I now have a beautiful new bedroom that is easily accessible and where I can feel more independent. Let me tell you, this has completely changed my life for the better, and I can't thank them enough! Next on the list of renovations is Erin's new room. When that's all done, Erin's old room will become the new office/ Jeff's room / guest room. Wish us luck!

I also have a few announcements to make. This past summer I was fortunate enough to graduate from Stockton College with my Bachelors degree in Psychology and a minor in Holistic Health. My plan was to move onto grad school in the spring to get my Masters in Library Science. This most recent flare up has given me a bit of time to think about my future. I know I want to work in a library again, but I'm not sure if it makes sense to take out all the loans for grad school if there is a chance by the time I'm done I may not be well enough to work. After much research, I have decided to apply to Northampton Community College to get my Library Technical Assistant certification. This will involve 5 (but I wantto take all 6!) online courses that will only take 2 semesters. This will allow me to live at home, spend time with my family, and take the time I need to continue to get better.

My other exciting announcement is that four years ago I was an extra in a movie called "The Mighty Macs". Over the years I have been very lucky that incredible opportunities have come to me during times when I was feeling good. One day my good friend Alexis called me up to say she was going to be an extra in this movie and would I like to join her. Of courseI said yes! It took a long for the movie to make it to theaters, but now we are on the big screen! Our families went to see the movie the other night, and we had so much fun finding ourselves in the background!

Thank you again everyone for all your support over the years! You have made some miracles happen! Please pray for all people affected by invisible illnesses such as RSD, including their families. Please pray that one day there will be a cure. And please pray for all the doctors and their teams who dedicate their lives to helping those of us with RSD like Dr. Cantu, Dr. Luis, Dr. Schwartzman, and Dr. Lin because we would be lost without them!

Kerri

Need a Little Faith

Thu, 04 Aug 2011 05:37:00 +0000

The last few days have felt a bit like a whirlwind, but so much good has come. We spent our first night back at the hotel Sunday night, but when Kerri seemed very sick on Monday we called Dr. Cantu. It turns out one of the medications she was taking to control the pain from surgery and RSD can make you feel like you have the flu. He suggested stopping that one and within a few hours she really started to bounce back. She started smiling again and was able to eat more than just a bite or two of soft foods. Mark and Erin enjoyed one more terrific visit with Jessica and Sarah while Kerri rested up to be able to make the journey home on Tuesday.

Dr. Cantu visited Kerri at the hotel on Tuesday morning before we left for the airport. He got quite the surprise when he saw her, amazed at how good she looked. The trip was long but she was quite a trooper and made it through the day. We arrived home at midnight and were greeted by a very happy pooch, eager to catch up on some fetch and cuddles. Thanks to Kristin he had a great time while we were gone. He opted to snuggle on Erin’s fuzzy rug to be close to all of us to go to sleep last night.

We had an interesting experience flying from Atlanta to Philly. Because of Kerri needing her wheelchair we are usually some of the first ones to get onto a plane, but the last ones off. As we were getting on a woman sat down 2 rows ahead of us with pizza. Another woman coming down the aisle saw it and mentioned that she would like some, so the woman gave her the pizza. We commented to ourselves what a nice thing that was for her to do.

After the flight, we learned from the flight attendant that the “random act of kindness” woman was Patti Labelle! The flight attendant didn’t know she was on the flight. It was one of the workers in the jet way that commented to the women as she got off the plane that she looked just like Patti Labelle, to which the woman replied “I am Patti”. Erin has decided that from now on if she flies, she should probably take everyone’s picture in case someone is famous! (By the way we have neglected to mention that on Saturday afternoon, Erin was treated to some iced coffee at the coffee shop in the hospital by Dr. Cantu and Dr. Luis. They not only treated Kerri better than we could have ever hoped for, but made Erin feel quite special too!)

Kerri will be examined by our dentist, Dr. Wright, tomorrow to make sure everything is healing well. In 2 weeks she will start another round of low dose intravenous infusions in Philadelphia with Dr. Schwartzman. After surgery, these treatments are needed again more frequently to keep the total body RSD symptoms at bay. We are very fortunate that everything has gone so well.

I looked up some of the lyrics for Patti Labelle’s songs today. This particular chorus reminded me how blessed we are to have all of you – our family, friends, doctors, and very special fellow RSD patients and families. Please keep them all in your prayers.

Hold on to me and we’ll be stronger

Together, stronger forever

Gotta have a little faith

To help us see things through

(This I know is true)

Sunset from the flight home

Thank you! Kathy, Mark, Kerri and Erin

Some hurdles to overcome but moving ahead

Mon, 01 Aug 2011 03:43:00 +0000

Hi everyone! Sorry we didn’t write sooner but the past 24 hours have been a little more difficult. Last night Kerri started to get pretty severe RSD pain down her left leg and right hand. We became quite worried that the total body RSD symptoms were all coming back that she had before the coma. We called the wonderful Dr. Cantu at home and he quickly helped to put us a bit more at ease. As always, he had a plan. He had the nurse administer one medication through her IV central line and when that didn’t help much he ordered something else which definitely helped and allowed her to get some rest. We thought the discharge plan would have to be postponed. Dr. Cantu told us not to worry that he would keep her at the hospital as long as she needed. But our prayers were answered and she woke up this morning feeling a little bit better and really wanting to leave the hospital.

We came to the hotel this afternoon. The trip was difficult leaving her exhausted and not feeling well. But that is to be expected with all that she’s been through this week. Thanks to our friends Jessica and Sarah, we had a wonderful driver who really took the time to drive very slowly and carefully. He had a van where we could just push her wheelchair up a ramp and he secured her carefully staying right in the wheelchair. I really thing she will start to feel better tomorrow. She can just rest in bed Monday and we hope to fly home on Tuesday.

Just in case you were curious, we found out that the tooth fairy comes to Monterrey, Mexico! She left some PESO coins under Kerri’s pillow the night after her surgery. All sorts of wonderful magic happens here!

Thanks for all of your prayers and wonderful notes to us. We really appreciate it – love and miss you all!

Kathy, Mark, Kerri and Erin

Day 3 of Boosters Brings Some Good News

Sat, 30 Jul 2011 01:39:00 +0000

Hi all! Kerri has made it through her 3rd booster without any major problems. These treatments are a bit rough to go through physically and emotionally. Dr. Cantu is very pleased that there have been no RSD flare ups in other parts of her body and she’s done so well that he said we may be able to stop the boosters now. She’ll remain in the hospital for a few more days so they can monitor her closely as all the medications are lowered. He spent at least 2 hours with her watching over her carefully, answering all of our questions (I tend to be a bit of overprotective, “we need to know everything” Mom when we come here – the people in this hospital are quite patient with me!), and visiting with us.

We find it quite sweet that each day during the boosters, Kerri holds her hands together and holds onto her ring from Jeff. Jeff, you are always on her mind and she loves you very, very much!

We have another little side note about the nice things people do for us here. On the first night we were here at the hospital, Erin and I were in the cafeteria. The manager remembered us from last year. I was looking for some pepper to bring up for Kerri for her mashed potatoes. When I asked for pepper, the manager smiled and showed me where the shaker was but told me to wait “un momento”. She came back in a minute with a specially prepared container of special “robusto” pepper to last Kerri for the week. Kerri has enjoyed it and felt special.

Thanks again for all of your prayers and for writing to us – it definitely makes us all feel closer to home and very reassured.

Erin's Adventures

Fri, 29 Jul 2011 08:29:00 +0000

Kerri had her second round of boosters and did better with them. She was more tired afterward, but felt the booster itself went more smoothly than on the first day.

Erin spent the day with our friends Sara and Jessica. She went shopping at one of Monterrey's largest malls, which is quite large and is across the street from the hotel where the President of Mexico stays at when he visits Monterrey. She was treated to many flavors of frozen yogurt while shopping at the mall, and took numerous pictures of the bunnies and other animals in the pet store.

Erin then got to spend the afternoon and evening visiting with Jessica. They spent several hours in the warm sunshine playing UNO, trivial pursuit, and just talking and laughing. They also managed to nearly finish the entire batch of chocolate chip cookies Sarah and Jessica had baked. Erin and Mark then had a wonderful dinner or stuffed peppers and spagetti pie that Sara prepared. We are sure that both Erin and Jessica will sleep well tonight.

We also met the mother of a young patient at Hospital San José (through our friends Sara and Jessica) with a rare condition, so rare that he is the only person in Mexico with his condition. There are no specialists for his condition in Mexico, so he travels all the way to Dupont Childrens' Hospital in Delaware where he sees the same doctor that originally diagnosed Kerri with her RSD. It is just another demonstration of what a small world we live in.

We look forward to Kerri having the opportunity to visit with Jessica and spending time doing whatever they will feel like after Kerri is released from the hospital. Thank you again Sara and Jessica for being such good friends. Good night and God Bless.

First Day of Boosters

Thu, 28 Jul 2011 03:00:00 +0000

As expected for the day after surgery, things were a little more rough for Kerri today but overall everything is still going very well. The oral surgeon visited this morning and was very happy with how little swelling there is. He feels Kerri is doing great! She had more pain today but this is to be expected after having 4 wisdom teeth out yesterday. When RSD is in the picture, pain is amplified, so the medical team is trying very hard to keep her comfortable. She had a 2 hour high dose booster infusion this afternoon with Dr. Luis, Dr. Cantu's partner, at her bedside the whole time. Seeing Dr. Luis again was wonderful and he couldn't get over how well Kerri looked since last year. Kerri woke up about 2 hours after the infusion was done. The treatment was unsettling for her but she is on board for the 3 or 4 more days of infusion to come. She is quite a trooper! She was able to start eating some soft foods today and enjoyed some mashed potatoes. Each day she's unable to eat or drink for 6 hours before the infusion, so by the time she woke up she was very hungry and thirsty.

Mark stayed right by Kerri for the infusion so I was treated to lunch with Erin at the hospital coffee shop and a little time soaking up the beautiful Monterrey sunshine in front of the hospital.

We love and miss you all very much. Kerri really loves having us read the comments you are sending to all of us. It is definitely one of the high points of our days here! Thanks.

Love,

Kathy, Mark, Kerri and Erin