Rinnie updates
>???????? ????? ???????? This is where I’ll keep you posted on how Rinnie is doing. I’ll include details such as her treatment and whether we are at home or at the hospital. I’ll try to keep it updated every day or so. Rinnie loves visitors, so please call us first, then come on out! Here’s where we are as of the end of May, 2008: Rinnie had an MRI on Friday, May 23, 2008. We were told that the lump on her butt was not a cyst as we had been told earlier, but was indeed a tumor. Dr Scothorn (Pediatric Oncologist) admitted her to the 5th floor of Mission Children’s Hospital on Friday afternoon. Over the weekend, she had more MRI’s, CT scans, a bone scan and a biopsy. They also put her on medication to control her pain. Comfort at last! We went back home on Memorial Day. Auntie Mel came up from Atlanta and stayed right by her side for all of the testing, even sleeping in a VERY uncomfortable recliner, not eating when Rinnie didn’t get to eat because of testing, and never even fussing about it! Pam has been an RN for 32 years now, spending 22 years in hospitals. This is the best hospital that she has ever been exposed to…and with military moves, she has vast experience! The staff was absolutely incredible. On Thursday, May 29th, we went to Dr Scothorn’s office and got her test results. He put the laptop on the table beside Rinnie and showed us the pictures of the tumor. He explained everything that he knew to all three of us, Rin, Pam and Mel. He gave us lots of time for questions and then gave us a tour of the office so we could meet the other doctors in the group and all of the staff as well. They are such nice people! What he told us is that Rinnie has a tumor at the base of her spine. He knows the general classification of tumor, but not the exact type. He sent the biopsy samples to a specialist in Cleveland to determine that. Actually, we don’t really want to know. It doesn’t really matter to us. The tumor already has a name….Theodore! That’s all we need to know. The tumor is the size of a softball and was developing there in an area where there is not much to press on, so there weren’t any symptoms until it got pretty big. She did hurt, but we thought is was an injury from falling on the balance beam at gymnastics. Then, when it started to have a bulge, we were told it was a cyst. And then one day it sorta popped up, and got huge! The plan is that Rinnie will have a porta cath IV access placed on her chest wall (under the skin so she’ll still be able to go swimming and be active) on June 2nd. She’ll have a PET scan on June 3rd to see how “active” the spots in her lungs are. Doctors in general say that their plan will most likely be for her to do chemo to shrink Theodore, possibly radiation, and later microsurgery to remove Theodore. We do not have a micro-neurosurgeon here, so she would go to Atlanta for that. She would lose her hair with chemo, and we already have gotten her a couple of wigs to add to her collection, so she will remain her stylish self! And Pam’s hair is now a bright blue! It may indeed come off with Rinnie’s hair. We’ll see. Auntie Mel’s nice light blond hair now has purple at the tips of the spikes. Very stylish! So there’s your update. Please check out back on Rinnie’s page for pictures soon. (Pam doesn’t know how to do that part yet, so hopefully Web Guy will get those up soon.) Please feel free to leave a comment. So many people have called and said “Give Rinnie a hug” or Give Rinnie my love”, so now you’ll be able to tell her directly here. I get an email when someone makes a comment, so we’ll be checking often.Pam and Rinnie are so very grateful for this community and for the love that you have shown us. You rock!If you wish to donate towards medical expenses (Pam has made too much money to qualify for Medicaid, but is currently not working enough to cover the bills.) you can click here,
or go to www.rinnierocks.com. There is a slide show of pictures of Rinnie and her friends there. If you have pictures of Rinnie that you wish to post, please email Pam at pam@phoenixmassageofasheville.com and she’ll send you the link.
June 3rd, 2008 at 12:17 pm
june3,2008
Rinnie had the porta cath IV access placed in her chest yesterday. The doc had some difficulty finding her vein, so she was quite sore and wound up staying in the hosital over might so they could keep her comfortable.
We are going for the PET scan this afternoon and then home. On Thursday we’ll go to the clinic for test results and the plan. The first doctor told us that we would start chemo then, but this doc said we’ll just talk about it.( I take notes so I don’t think I screwed that up!)
Please see rinnierocks.com for more information.
Thanks!
Pam
June 5th, 2008 at 8:27 am
June 5,2008
Rinnie had a good day at home on Wednesday. She was comfortable and ate pretty well and was in good spirits. About 9pm, she had flushed cheeks, so I took her temperature and it was 101 degrees. I called the doctor and she said to take it again in an hour and call her back. So I took it 4 times with 2 different thermometers! It was still 100.3-100.8 depending on the thermometer, so the doctor admitted her to the hospital for cultures and IV antibiotics. So here we are again!
The plan is to go ahead with doing another biopsy (the first one was inconclusive). So she is scheduled for 10:45 this morning. She woke up this morning feeling queasy and hurting, so they gave her some IV medicine. And she is now comfortable and snoozing. She is scheduled to go home after the surgery, but they will keep her overnight if she is uncomfortable or too nauseated to take her oral medications.
I am so very grateful for your love and support! Rinnie is open to visitors, but please call first for the timing of the visit. She doesn’t like people to see her when she is feeling sick. As always, the biggest thing that you can do for us is to continue to pray and see her radiantly healthy!
If you want to help out with meals or errands or chores (Pam is not leaving Rinnie’s side) go to www.rinnierocks.com for contact information. Letty Halpern is organizing meals and Dave Spector is coordinating errands and chores.
If you wish to contact Rinnie directly, she has two email addresses: rinnieliciousness@yahoo.com or rinnierocks@yahoo.com.
Blessings!
Pam
June 6th, 2008 at 10:40 am
Good morning! It is Friday, June 6, 2008, and all is well in the world!
Rinnie had her second biopsy yesterday and did beautifully! No discomfort, no nausea, she’s eating, drinking,and slepping well. Actually it’s 8:20am and she is still asleep. The doctor tiptoed in and is discharging us from the hospital this morning. We’ll go to the clinic on Wednesday for the biopsy results. The first one was clear,
June 8th, 2008 at 8:43 pm
It is Sunday evening, June 8, 2008. Rinnie has had a good weekend. She has had some difficulty with standing for any length of time, and the heat is hard on her, but she has been pain free and is eating and drinking well.
Monday, Rinnie starts day camp. She will take it slowly and I may go get her at noon if she wants me to. I am staying available for whatever she wants/needs.
We have made some diet changes, and started some herbal supplementation. These, along with many prayers, are resulting in a stronger, healthier Rinnie!
Thank you for all of your support. I am so very grateful for those of you who have stepped forward to bring us healthy meals, and offered us your kind thoughts and prayers.
Pam
June 10th, 2008 at 12:43 pm
It’s Tuesday, June 10th. Rinnie stayed home yesterday because she was feeling lightheaded. But today she is at camp with her friends. It’s about 12:30 now and she hasn’t called for me to come get her, so I assume that all is well!
Rinnie continues to eat well, sleep well and watch lots of comedies. She borrowed the first DVD’s of the whole season of Friends, and has been watching them just about non stop! We will have both cable TV and internet connected on Wednesday afternoon, so she will have a greater variety of things to distract/entertain herself with.
Her uncle convinced his work to donate a computer to Rinnie. It’s purple, not the Flamingo Pink she initially wanted, but it seems that purple is acceptable to her! It should arrive this week as well.
I am so grateful for our community! Thank you for your kind words, thoughts and prayers.
Pam
June 12th, 2008 at 11:36 pm
It’s Thursday, June 12th, and all is well in our world. Rinnie started her treatment in Atlanta this week. We have a medical name for Theodore and a plan for telling him goodbye. We feel very hopeful that we will be having a going away party for him soon!
Rinnie is doing well with her treatment. She is eating fairly well…not with her usual great appetite, but she’s eating. While in the hospital previously, she didn’t eat so well and lost a total of around 6 pounds during her 3 hospitalizations. We discovered that if I bring in my cooking from home, she eats. She will not eat hospital food at all! She is a legendary picky eater and has never been one for eating vegetables. However, she has agreed to drink fresh veggie juice twice a day. She has kept her word (except for the times that I didn’t provide it because we were not home where the juicer was).
Rinnie is also sleeping well, and is taking much less pain medication. In fact, she has had nothing (not even plain Tylenol) since Tuesday morning. She is one tough cookie, so I am constantly asking her “what is your number”, since she can act tough and tries to NOT take the medication even when she probably should! The medical people want a clear way to track her discomfort and have a 10 point scale for it. Her numbers this week have been 0.5 most of the time. Since she has hit 10 several times in the past, and regularly hits 4-5, I am very pleased with this!
Today, the highlight for Rinnie was the arrival of her laptop! She is thrilled with it, but because of a miscommunication with the cable company, they installed a regular modem and connected it to my computer. It has no wireless capability and our old wireless router does not work since it was made for DSL. This is our first time to try broadband internet service. I even connected her laptop directly to the modem, but it did not work. Tomorrow is a new day and an opportunity to see what it will take to fix this and get Rinnie surfing the net again! Many thanks to Linda Scank for spending about half of her day Wednesday at our home dealing with the cable guy and getting our internet and TV installed while we were in Atlanta starting Rinnie’s treatment!
Thank you so much for your prayers and love. We are so very blessed.
Pam
June 14th, 2008 at 10:32 am
Saturday, June 14th.
Hello all! I’m working all day, and Rinnie has a friend over to hang out with. And cable TV to watch, DVD’s to see, a dog to walk, a hot tub to sit in…. I’m going home at my lunch break and bringing them both back to my office to spend the afternoon there. I’m sure Rinnie will bring her laptop! There’s a porch with tables and chair where they can sit, or a spare office that they can hang out in. I also let them walk the block to the bakery and get some wholesome organic treats.
All in all, Rinnie is doing well. Still not the best of appetites, but she’s eating. She made blueberry muffins this morning, so the house smells wonderful!
Thank you for all of your support. I continue to feel very blessed!
Pam
June 16th, 2008 at 2:51 pm
Good Day!
It is June 16, 2008 and we are having a Happy Day! I hope you are as well.
Rinnie is continuing her treatments in Atlanta. She is “fabulous”! (Straight from her mouth) She is doing her best to eat healthy food, do her homework and be happy. We are going to the pool tonight and that makes a BIG impact towards her feeling happy! We are blessed to have friends here who love us, let us stay in their homes, eat their food and swim in their pools.
Rinnie’s laptop was having some problems, so Melony’s husband has fixed it for her. Did I say we were blessed?! That alone saved me from having to box it up, mail it out to her uncle, have Rinnie wait on it to be fixed and get it mailed back to her. (Let’s face it. The biggest challenge there was my getting it mailed out!!)
Thank you for all of your continued prayers and support. Feel free to email, or call if you wish. We’ll be back soon!
Pam
June 19th, 2008 at 3:55 pm
Hello!
It’s Thursday, June 19th. I am home again and working some. I am so very grateful for my clients who have been understanding and patient with scheduling around Rinnie’s needs! You guys rock!
Rinnie stayed with Auntie Mel in Atlanta. She is still having her treatment and continues to tolerate it well. She has not had any narcotics for pain relief since last Tuesday! She is doing just fine with plain tylenol. The doctors use a 10 point scale with 0 being complete comfort and 10 being the worst pain you can imagine. She has hit 10 a few times in the past. This week, she has been from 0.5 to 2, and totally relieved by the tylenol. Both of us have the narcotics in a tiny ziplock baggy in our purses so that it is available to her 24/7. Without the drugs, she is returning to her spunky self. She is enjoying her intellectual sparring with David! Melony and David have 13 critters, so she in enjoying all of that dog, kitty and ferret love, too.
I return to Atlanta for Rinnie’s appointment on Tuesday. Afterwards, I have a special surprise for her. Can’t say what it is here, because she just might read this, and then it wouldn’t be a surprise!
The laptop is up and running. Rinnie left her phone charger cord in my car, so it is now on the way to her via express mail. Just know that if you’ve tried to call or text message her, she will not be able to answer until tomorrow or Saturday.
Thank you all for your prayers and thoughts. I am so grateful for our friends and entire community.
Pam
June 21st, 2008 at 9:28 am
It’s Saturday, June 21st. Rinnie remains in Atlanta and I am home. She had a tough day yesterday with fatigue. She dragged herself around a bit. I think she was also missing me, but absolutely denied it when asked! I offered to come get her or to have Melony bring her half way, but she refused. Part of the problem is that a friend of ours loaned her the series “Friends” on DVD. She has already watched up to about season 5, and is pretty addicted to them! She stayed up until 2am, watching the shows. She is even dreaming about it!
She has also been having dreams about sugary things. Several nights in a row, she’s dreamed about sugary things. Seems that trend is over now. I called to check in just now and she says that she is “dandy”. She sounds much better than she did yesterday. She still wouldn’t talk to me much…she had paused “Friends” in order to talk to me! More important things to do than talk on the phone.
We continue to be grateful for your thoughts and prayers.
Pam
June 24th, 2008 at 10:32 am
It’s June 24th and we are in Atlanta! Rinnie had a few days here by herself with Melony and David and she is doing well. She is eating better than I have seen her eat in a long while. She has more energy and although she is still not able to sit, she can move around more easily. I think she grew an inch while we were apart!
We go back to the doctor in a few minutes, and we’ll find out the plan from there. Rinnie has a camp to go to in a couple of weeks and we are hoping that she will feel up to it. If she is unable to go….she will feel like the summer was wasted! And she’s been to the pool almost every day, so you know THAT’s not true!
We have family coming to Atlanta the 4th of July weekend, so we’ll at least be back for that, even if Rinnie doesn’t have more treatments. It will be great to see Marie, Lisa, Michael and Leanne again! They are Bruce’s family.
Please continue your prayers for beautiful Rinnie. I promise to do my best to figure out how to upload pictures to this website so you can see that she is thriving. Gotta get an email off to webguy!
Thank you for your thoughts and prayers and love.
Pam
June 30th, 2008 at 1:27 pm
It’s June 30th and it’s been a while since I’ve done an update. I took Rinnie to the beach, and we were out of cell phone and internet range. We are back to where we have air conditioning, TV and telephones now! The beach is her happy place and I felt like she would be able to heal there. She loved being in the waves, but it was tiring for her.
Rinnie has mostly done well with treatment. Right now, she is having some intestinal issues. She is a finicky eater at best, but is eating some, and is maintaining her weight. She had gained back a couple of pounds over what she lost during the initial hospitalization, but is currently just maintaining. That’s so much better than losing!
I think I may finally be able to get pictures up of Rinnie on her page. I have the directions, now I need to find the time and concentration to work on it. Soon!
Thank you all for your phone calls, prayers, love and support. We are so very blessed!
Pam
June 30th, 2008 at 2:13 pm
Well, I figured out how to upload pictures! So I added a couple to the bottom of the Rinnie’s page. And now I’ll try to put some here….
July 3rd, 2008 at 1:07 pm
It’s July 3rd and we stayed in Atlanta for a fun visit this time. Bruce’s family (Pam’s late partner) is coming to Atlanta to visit with Adam, Bruce’s son. Since they are coming from Iowa, we figure it’s a good thing to stick around so they don’t have drive 4 hours in order to see us. We are looking forward to the visit. We usually visit each summer, alternating who gets to do the driving/flying. Luckily, they were coming our way this year!
Rinnie is doing well right now. She has just been complaining that she needs to be fed! We are currently eating a vegan diet, so Mom is off to find her an Annie’s pizza with soy cheese.
Pam has been reading the China Study about how they have repeatedly shown that they can turn on and turn off cancer by feeding lab rats caseine (milk protein). Pam and Rinnie have been vegetarians for 6 years or so, but added in milk products about 18 months ago. Rinnie started having pain about 12-14 months ago, so we wonder if there might be a connection here?! So for at least the next month or two, we are not eating any milk products. It sure can’t hurt to avoid milk for a while. Rinnie has plenty to eat these days because Pam is a creative cook and knows her eating habbits inside and out!
Gotta go get Rinnie that pizza. We are so very grateful for our community and send you love back tenfold over that which you have sent us!
Pam
July 6th, 2008 at 10:14 pm
It July 6th and we are finally back home! We had a wonderful visit with Bruce’s family yesterday. We did a lot of hanging out and talking, and of course, eating. It was good to catch up and visit.
Rinnie did well with the trip home. She slept part of the way, and has been watching TV since we got here. The Mom has been doing chores (laundry, unpacking the car, feeding and petting the dog and cats, checking in on the chickens, sweeping and mopping, the usual stuff!) We came home to dog pee on the floor (Our wonderful dog, Scout, is old and didn’t get out as much as he needed to while we were gone and Pam has a sensitive nose!), cat barf on Rinnie’s bed and just general stuff to do (the hot tub stopped working while we were gone, so Pam fixed it). It is good to be home. It is good to be home.
Rinnie is in good spirits, balancing her need for extra rest and her desire to be on the go. I am proud of her. She had a few cards to open when we got home and she already has them posted on her closet door where she feels your love every time she sees them. Thank you for your letters, cards, emails, phone calls and prayers. We are so blessed!
Pam
February 27th, 2010 at 9:51 am
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