If you have been following this blog, then you know that Rinnie started back to school on Tuesday, the 12th of August.  She made it the whole entire day at school, but I wound up taking her to Atlanta for more treatment on Wednesday, coming home on Thursday and then we rested some on Friday.  And that’s the way the first week of school went for her!  She was glad to see her friends.

So she went back to school again today.  The day went well.  Much better than last week.  She is stronger and did more walking around than she has for a very long while.  She has pretty much been on the couch or in the bed for over 2 months!  And this is the girl who has always been on the go and has gotten bored so very easily in the past. She even ate her lunch today.   It looks like I am repeating 8th grade, since I am staying the whole day with her.  Once she is comfortable with me doing so, I will drop her at school and then stay at home (and clean my house!) for a few days or until she is comfortable with me returning to work.  School is a tonic for her.  She thrives there.

One of the teachers at ArtSpace, Ms Tara, is married to a man who makes medical equipment for a living.  He met Rinnie at school today, looked at her body and at Theodore, measured her and saw how she is unable to sit.  Then he and his business partner designed a chair for her to sit in at school.  We went back up to the school around 4pm and took the chair for a spin.  It is constructed of PVC pipe, so it does not look like a wheelchair, is constructed for her small size, and is very lightweight.  It does have wheels and will allow for her to sit at a desk, roll from class to class and after he makes some adjustments she will also be able to lie back in it and rest.   For free.  We give it back when she no longer needs it.  We are so blessed!  Once we get the chair on Wednesday, I’ll be sure to take a picture of Rinnie sitting in it and post it to the blog!

So how is Rinnie doing?  Very well, I believe!  I put my foot down on the eating thing and we both did a juice diet all weekend.  (I never ask her to do something that I’m not willing to do myself.)  She had not been eating much at all, but all of a sudden she had amazing cravings, which have happened to me in the past, but not this time at all.  I stuck to it and she had juice for 3 days.  When she wanted to eat more or to have something warm, she had broth or potato soup.  She is stronger and I believe this weekend has something to do with that.  Today she ate more solid food, (peanut butter sandwich and applesauce for lunch and then chili for dinner) eating with a better appetite than she has in a long time.  I’ve still given her juice twice today and will continue to do so.  I’d love it if she would let a vegetable pass her lips, but until that time, I will continue to give her freshly juiced fruit.

We are so grateful for our community.  We have received donations from many of you to help with medical expenses, food, gas, clothes for Rinnie and even a short trip to the beach (Meyer Baba Center in Myrtle Beach) this summer.  If you wish to help us, you can go to Rinnie’s website (www.rinnierocks.com) and click on the “donate” button for paypal, or you can mail a check directly to Rinnie.  Our home address is 540 Buckeye Cove Rd, Swannanoa, NC  28778.  Please do continue to remember us in your prayers.  We can feel you out there…..

Tuesday was Rinnie’s first day back to school. She made it the entire day! Woooo Whoooo! She was very nervous about going back to school, about being different, about not being able to do the things she used to be able to do, about not being able to sit, and having to be on the floor on a mat. For several days before school started, she was in a tizzy. She worried and fretted and then worried some more. And worked herself into a place where she was hurting more and having some numbness and Theodore was swollen pretty badly. (She took 3 doses of pain medicine on Monday before school started on Tuesday! She has not had 3 doses of pain medicine since she started the treatment in Atlanta, so that was a big big change.) So Wednesday morning I called and took Rinnie in for a treatment that afternoon. I have to say that the treatment was nothing short of miraculous! Her pain decreased, the numbness decreased and Theodore went back to the size he was before the fretting began. How cool is that?!

We stayed over in Atlanta Wednesday night because I really did not want to drive down there in the morning and back home in the afternoon. So Rinnie missed school on Wednesday and Thursday. Then today was a day of rest for us both. Rinnie will return to school on Monday, and this time she is looking forward to it. I spoke with her teachers today and she has all of her missed assignments to do this weekend.

Her fears were not grounded…after all, fear stands for False Evidence Appearing Real! She actually had a good day at school on Tuesday, but was stuck and nothing we did could get her out of her stuck-ness. She visited with friends. They joined her on the floor fro lunch, they all swarmed around her for hugs when she got to the classroom in the morning. Thankfully, Dr Turner could and did help her to get un-stuck.

Currently her appetite is good, she is eating and drinking and comfortable. I bought a bunch of fruit today at Amazing Savings and have made her several concoctions of fresh fruit juice tonight. Her body is rejecting the junk food, but she is still not allowing healthy food past her lips. This means she is hungry! So we are juicing until her body figures out the new paradigm. (She is craving a visit to Ryan’s Steak House for mashed potatoes, macaroni and cheese and their rolls, or curly fries at Arby’s….neither are things that she has had for a long time, and then only rarely when nothing else was available.) In an attempt to get her body to an alkaline state, we are avoiding milk products, sugar, cheese, bread and fried foods. Cheese and bread were all she would ever eat before this summer. In other words, this is a very major shift for her. I know that she will come out the other side of this a healthier person than she has ever been.

Please feel free to leave Rinnie a message by clicking on “comment”. You will need to register, but it’s a quick and easy process!

Staying in gratitude,

Pam

I have been blogging all summer about my daughter, Rinnie. She was diagnosed with cancer Memorial weekend. Our summer has been a roller coaster ride filled with hospital visits, doctor visits, travel and generally being together to restore Rinnie’s health. This will be a long blog, but stay with me, please!

What I have NOT said in the blog is what treatment modality she is having. I am not one to keep secrets or to hide in the closet. I had a very specific reason for not talking specifically about treatment: I was warned that my daughter could be taken from me and be forced to receive chemo and radiation. I was hoping to avoid the whole social services thing. But since we have already been reported for medical negligence, had the social worker in our home evaluating me and my daughter, and since she said that it appeared that I was doing all that I can do to help my daughter, I’m coming clean.

Yes, she was in the hospital for diagnosis. Yes, we were told that they would do chemo and radiation. The first biopsy was clean. So they did a second one. We were told right away that the prognosis was grim…inoperable, that she already had metastasis to her local lymph glands in her pelvis, her mediastinum and had 2 spots in her lungs. They immediately started her on heavy doses of narcotics, turning her into a zombie child. I knew it was bad, because doctors just don’t give out narcotics lightly! I did not know of any other treatment and was quite frankly scared out of my wits! I have lost one daughter already to SIDS when she was 5 months old. My contract with Rinnie is that she would STAY!!!

Green Supreme Barley tablets

I am blessed with a wonderful community! My friend, Ginny, came over and brought me a book and some barley green tablets. She asked me to read the book. I carried it around for a week, but didn’t read it. I did start giving my daughter the barley tablets, though. Although a picky eater, she would take the tablets and I knew it was vital to get her system to an alkaline state.

Cancer Free: Your Guide to Gentle, Non-toxic Healing by Bill Henderson

Since I knew that my daughter would take the barley tablets, I went to the website to order some more. (1-800-358-0777) At that website I saw information about Bill Henderson and his book, Cancer Free: Your Guide to Gentle, Non-Toxic Healing.  This was the book that Ginny loaned to me to read.  Sometimes it takes me a while, but I GOT IT, and decided to read it. I soon realized that I actually KNEW Bill Henderson! He and his wife occasionally buy my free range eggs. (I have a small chicken farm.) So I started learning about all kinds of alternatives to chemo and radiation. And finding some hope….

Essiac Tea

Meanwhile, my sister-in-law, Lisa,  emailed me and said that she thought if she had cancer that she would been drinking gallons of Essiac Tea and sent me a link to a website. So now I’ve started my daughter on Essiac tablets (she won’t drink the tea) and I called Bill up (since I conveniently had his phone number from his egg orders) and he talked with me about the alternative cancer treatments. He was a a force of calm in my tornado of fear. He encouraged me to focus on Chapter 5 of his book (the treatment chapter), to have Rinnie read it as well, and to call him back as soon as we had done so.

German New Medicine

Rinnie had an appointment to go back to the oncologist here in Asheville to get the biopsy report and talk about treatment. (Let me interject here that those doctors are amazingly wonderful and caring physicians. I have absolutely no angst with them.) A pivotal moment for me concerning the whole chemo issue was when Rinnie was in the hospital the last time - when the second biopsy was done.  This little girl of about 10 years old walked by me in the hallway. She was holding onto her IV pump, leaning forward, bent down, with almost no hair sticking out in all directions, and looking about 100 years old. It was clear to me then that I could not do that to my beautiful, vital Rinnie! My search for alternatives went into warp drive.

We spoke with Bill Henderson a second time. He talked with us about alternative treatments, which could work the best for Rinnie and then told us about Dr Turner. This doctor does a type of treatment that is based on clearing the emotional cause of cancer! That rang so true for me. Our lives have been filled with those phone calls that you really don’t want to get! (Remember that first daughter who died of SIDS?) The oncologist called me, telling me Rinnie’s diagnosis (undifferentiated sarcoma with metastasis) and that the prognosis was grim. There had been delay in treatment due to the first biopsy being inconclusive, and he wanted to start treatment (chemo and radiation) immediately. I went to the computer, learned that the prognosis is really a death sentence and that chemo and radiation had no hope to offer at all. Her condition was already considered to be terminal. Alternative treatments offer hope that the oncologist can not. Bill referred us to a clinic in Atlanta where Dr John Turner practices German New Medicine.

After that phone call, I talked with Rinnie, explaining that she needed to make a choice and that I would support her no matter what she chose. She is 13 years old and very intelligent.  She is the one who needed to make this choice,  not me.  She had been told about everything all along.  When the oncologist told us the results of the MRI, CT scans and such, he put the laptop on the table beside Rinnie and showed her the actual scans, explaining them to us both.  So I just brought her up to date with her official diagnosis, telling her the prognosis, telling her that it was inoperable, telling her about chemo and radiation. I have been an RN for 32 years, so I know a little bit about cancer and the treatment in the US. Then I told her about the alternatives, herbs, homeopathy, German New Medicine. She had already read a lot of Bill Henderson’s book and done some internet searching on her own. She chose the alternative route, thanking me for “not being normal”! I could finally offer her some hope.

Rinnie has been receiving treatment since mid-June from Dr Turner. During this time we have encountered some more emotional upheaval. Our dog, Scout, was having some diarrhea while we were gone and my son took him to the vet. The vet suggested that since his calcium level was elevated that he might have cancer. Rinnie went into a tail spin, having more pain and experiencing increased swelling in the tumor. Then we had the visit from the social worker, evaluating us for medical negligence. This resulted in Rinnie losing hope and feeling despair and giving up. More swelling, despondency. Sleepless nights for me. She had another visit with Dr Turner scheduled and he was able to help her to shift that despondency and be in a place of hope again.

Where are we now? Rinnie and I went to the school Friday, august 8th, and had a powwow with the school director, the new counselor and all of her teachers. School starts back again on Tuesday, the 12th. The meeting went well. She was worried about how she could go back to school since she still can not sit easily and she tires easily. We found out that she only has to stay until noon in order to be counted present for the whole day. We found out that they are really awesome people who are willing to do everything they can to help her. She again found hope. She is excited to see all of her friends again and to return to her life….even if she feels tired!

I want to thank our community for the love and support that you have shown us. We feel so blessed. I will not work during the daytime hours from August 12th through the 15th, since this is Rinnie’s first week of school. (I will take a few limited evening apointments, however.)  I will stay home, 5 minutes from the school, and clean my house and yard. I am actually looking forward to it! Our home has been sadly neglected this summer.  The garden is usually filled with wonderful vegetables for me to can or freeze, and the planting beds are full of blooms.  I know that Rinnie will be happy to be back in her element at school. Starting the week of the 18th, I plan to be back at work full time.  You can to to www.rinnierocks.com, Rinnie’s website, if you wish to see a slideshow of her pictures.

If you wish, you may post a comment here for Rinnie to read. You just have to log in first. If you have any questions, please feel free to ask them here or email me if you wish a confidential response. My email address is pam@phoenixmassageofasheville.com.  In the coming week or so, I will post a few more updates in the comments section of this post.

Pam

Hello all,

We are home again. Rinnie just completed her last treatment before school starts on the 12th. She is doing well. The doctor is pleased with her progress.

She is very much looking forward to school. We don’t yet know how school will work out since Rinnie can not yet sit down, but we have a meeting with the teachers and the director of the school on Friday, and I’m sure we can work everything out in a mutually beneficial way. I figure I can make her a mat to lay down on, and the classroom can be configured so that she can see the board. She is a good student, and as long as she is learning, it shouldn’t matter how she is positioned. If she can not manage it, I’m sure that classmates can help her with transporting the mat from class to class.

Her school is a charter school, and it is my understanding that they get their funding based on the attendance for the first month of school. She will do her best to be there every day, all day. We do have another appointment in 2 weeks, which will require that she miss one day of school. Being my optimistic self, I am sure that everything will work out just fine. I would be happy to keep her home (I home schooled her brother for 3 years through his middle school) but it is important to her to go. I support her in that decision and will do everything in my power to see that she can be there.

Rinnie’s mission for the next 2 weeks is to be as active as she can, sleep well and to eat a healthy diet, all to allow her body to continue to thrive. The toughest part of that is the healthy diet. Except for when we are traveling, I have started giving her chores to do again. She is back to doing one chore every day, like emptying the dishwasher, cleaning the bathroom, sweeping the floor and walking the dog. Perhaps the most therapeutic of those chores is the walking the dog one! For both of them! Without the physical activity, she is not tired enough at bedtime and can not sleep. Her brother has loaned her his Wii and the Wii Fit game. We have enjoyed playing with it and plan on doing some of that every day. Rinnie has gotten in the habit of reading till very late at night and sleeping in. (She has finally gotten interested in the Harry Potter books.) Tomorrow I plan to start our usual “week before school starts” routine of going to bed earlier each night so that it’s not such a big shock to start getting up early for school! It won’t be quite a week, but we just got home Wednesday night.

I am so grateful for our community and your support. Thank you!

Pam

Hello! It’s July 7th and we are home at last! There’s no place like home for sure. Even Rinnie was ready to come home. It’s good to see our dog, our cats and to sleep in our own beds. We’ve been sleeping in the same room for over a month, so it was hard for me to leave her all the way down the hall in her own room! But I managed, with only a couple of tiptoe visits in the night.

Rinnie was supposed to be in camp for the next two weeks, but has decided to honor her body’s desire for rest and stay home. They have to walk 2 - 3 blocks twice a day to get to the rehearsal site, and that is hard for her. Standing for long periods of time hurts her back and her sitter-downer is not working at all! She is most comfortable when lying down.

That said, she has a pretty good appetite. She is one finicky eater, but I have 13 1/2 years of experience at feeding her, so I do a pretty good job. She gave me a loooong grocery list today of foods that she would love to be eating. We got home last night from Atlanta to a mostly empty refrigerator, so a grocery run is necessary today!

Physically, she has developed a “stitch” issue. Her body is spitting out the stitches from where they did the biopsy of Theodore. So the skin of the incision has opened a bit, is itching a lot and I’ve gotten a couple of stitches out so far. There’s one more that’s almost ready to leave, (no tugging or helping them to come out! I just wipe them off with a q-tip.) and we hope that is the last one. It’s back to nurse mode for Mom, cleaning the incision several times a day and putting on some antibiotic ointment so that it doesn’t get infected. That nurse thing just keeps coming in handy!

Mentally, Rinnie is doing pretty well. It’s hard for her that the summer is almost gone and school starts in a month! She misses her friends and we hope that now that we will be in town for at least a couple of weeks, that she can get together with her friends and visit some. She has been able to get out to do some swimming, which is her favorite thing about summer and that has helped a little. All in all, she stays positive and looks forward to school starting next month. She loves the summer, but she has always been ready to go back to school and see her friends more often.

Thank you for your continued prayers. I tear up daily with gratitude for someone who calls or emails and does something nice for us. It’s remembering us with prayers that touches us most. We are so very grateful for our wonderful community!

I am adding a comment every few days, so for updates, just click on the comments. Also, feel free to add your own comment/message to Rinnie.

Pam