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Callie's · Journey


When you get to the end of your rope, tie a knot and hang on.

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Hey Everyone,
Its Callie. Sorry we havent been updating, with Christmas around things have been crazy. I hope everyones Christmas was wonderful and maybe some of the stress has died down. As you know, my mom got a call from the mayo clinic and we now have an appointment on January 5th. Since then we have made our travel arrangements to Minnesota. I thought I would update yall on what time our planes leave and land & where we are staying. My brother, Prentice, lives in Nashville- so when mama gets off at eight on this coming Friday, we will go ahead and drive to Nashville and stay all night with them, leaving my car with them while we are gone.

We leave on Sat. January 3rd.

Our Itinerary to Rochester, MN [MAYO CLINIC]
Nashville, TN           to             Chicago, IL
Depart: 6:10am              Arrive:  8:00am

Chicago, IL              to              Rochester, MN
Depart: 10:50am            Arrive: 12:05am

We are staying at the Kahler Grand Hotel - which has a climate conrolled skyway connected directly into the Mayo Clinic.

If you dont know the Mayo Clinic is an actual CLINIC, with doctors offices & places where they run tests. If they decide to put me in the actual hospital I will be in St. Marys Hospital-[not the Mayo Clinic].

We Return on Mon January 12th.

Rochester, MN      to             Chicago, IL
Depart: 8:55am             Arrive: 10:05am

Chicago,IL             to             Nashville,TN
Depart:11:15am           Arrive:  12:40pm

We will try our hardest to keep everyone updated on the things going on. Please keep us in your prayers. We have been watching the weather in Minnesota & Chicago. There have been alot of flights cancelled, but we can never tell till the day of. Hopefully this will be the answer we have been waiting for. Thank you for all of your prayers so far. Keep them coming. We Love You ALL. Happy New Year!

I cant wait to get back to my normal life. I just want to be healthy again.

 

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hey everyone,

Sorry it's been a whole since I've updated. It's been really hectic around here. The benefit went awesome. I don't know what I would have done without my friends that put so much time into the benefit. They were able to raise over $7400.00 for us. This is making it possible for us to go to the Mayo clinic in Minnesota on Jan 3rd. Dr Brandes refered us up there to see if they can get Callie's headaches under control.
This past week has been really bad for her. She started feeling really bad last Sunday and just became really zombied on Monday and Tuesday. By the time we got to Dr Brandes's office Tuesday afternoon she was really in a "fog". They said the many medicines that she is on had been increased too fast and had all hit at the same time she was over medicated. They took her off alot of the pain medicines and cut back on two of the other ones, They put her on an extended release medicine to help with the pain. The only problem was when she woke up on Wed morning she couldn't walk or move without pain. I had to help her get around and even if she moved a muscle she cried out in pain. By that night I decided to take her to the ER to see what was going on and they said she was experiencing withdrawal from all the medicine changes. The pain continued for a couple more day and it wasn't until today that she could move without pain. 
     Mentally she was at the end of her rope. But God answered our prayers and they called us from the Mayo clinic and informed us we had an appointment with a specialist on Monday Jan 5th at 7:30 am. They told use to plan on being there all week for them to figure out waht is going on with the headaches. I know that they are going to be able to ease her pain and get her life back to some quality that she deserves.
We are now planning the detail of the trip and it has become the bright spot for us to focus on. Just 2 weeks from today we will be on our way.
Please continue your prayers for Callie and the Dr's that will be taking care of her at the Mayo Clinic. Also that we have a safe trip and return home. I'll try to be better about updating from now on and plan on taking the laptop on our trip so I can keep you updated while we are there.

Merry Christmas to all...
Tonjua & Callie
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Well we just returned from a two day trip to Nashville for test and Dr's Appts.  They ran the pet scan on Callie and the preliminary results showed that the tumor is probably not cancer. Thank you Lord!! Although it's not a definite, at least we can rest somewhat easier. They seem to think that the tumor itself is not causing the headaches but it is causing the pain receptors in her brain to be overactive thus causing the increased pain in her head and body. They are trying another new medicine that is actually for Alzheimer's patients. It is suppose to help control how the brain perceives pain. She also is suppose to start meditation and yoga classes to help herself better control the chronic pain. We discussed the lumbar puncture she was suppose to have wednesday with the doctor and decided to hold off on it for a couple of weeks to see if the new medicine would help first. The test still has to be done so they can test the cells but maybe her body will be better able to handle the pain then. Our wonderful friends are still hard at work at getting everything done for the benefit. We don't know where we would be without them and their love and support today. They are such great people inside and out. If you would like to donate anything for the auction just call me or Callie at 808-2606 or 205-1123 and we will get it to one of the girls. THANK YOU SO MUCH for everyones support. We love you all.  
-Tonjua
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Well it's been a long week. The increase in medicine doesn't seem to be working. They had put her on Stadol nasal spray to try to help control the pain, but it too, is not working. I'm at wits end here. I'm having to take her to the er about daily to get shots and they are beginning to become hesitant about giving them now. The Neurologist prescribed Demerol injections today to see if they would help. I had the pharmacist give her the first one so she could show me how to do it. It didn't ease her pain. The headaches have gotten worse since monday night's incident. Callie was showering to get ready to meet the pastor of Grace Temple where they are having her benefit, and while she was in the shower she dropped the shampoo and when she bent over to get is got dizzy and fell into the shower wall hitting the knot on her head, that has developed where the ICP test was done. This has caused the pain to be worse since then. i just don't know what to do anymore. The Pet Scan is scheduled for Dec 2nd at Baptist and they will also do a Lumbar Puncture at this time to test the spinal fluid. It is amazing that the two time they went into her brain that no one thought to test the spinal fluid! So now that is more pain she is going to have to endure. Maybe these test will shed light onto why the headaches are so hard to control. I guess a pain clinic is where they will send us to next to try to get something to ease her pain. Thanks to everyones continual prayers and support. I don't know where I would be right now without it. God is truly blessing us daily.
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Well After a trip to the oncologist and the headache specialist on Friday, they have increased Callie's medicine ALOT, and are running a test on December 2nd called a PET scan. I started to ask if she wanted me to bring my cat or dog for it but didn't think my warped sense of humor would be appreciated. lol  The oncologist wants to wait and see how the increased meds and new test turn out before anything else is done. Radiation will be a last resort because of how hard it is on the body. They are trying to regulate the severity of the pain with meds first. He also couldn't believe that no one had tested her spinal fluid ,yet. Go figure!! He said sometimes these tumors could be like a cluster of fluid filled cysts which could contain proteins or cholesterol that could be leaking into the spinal fuild like poison, causing pain. He also sent her for a chest x-ray, I don't know why, but he did. Then we had to go for more lab-work. It took 3 people sticking her 6 times before they could get blood. They found it in a knuckle. OUCH! We are going to check into getting a "porta cath" so they don't have to continue to do this. Her arms are black and blue.
Sunday was a good day. The headache was manageable pain, and she went to the church and stayed with me while I catered a dinner for them. It was great to see her out, with an occasional smile on her face. Monday and today has been back downhill. But we are thankful for Sunday and Pray the good days come more often.
THANKS... to all the wonderful friends and family who are putting forth so much work and effort to have a benefit to help with the expenses.
It's amazing you find out who your true friends are when tragedy strikes. I'm just so sorry for the time that has passed when I have been so caught up in my own life I didn't make time to keep in touch with them. I love you all.
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Hey everyone,
Well a quick update for a loooong week. Monday morning we went to the Nuero surgeon Dr. Tulapan for a second opinion. He admitted Callie to Vanderbilt Childrens Hospital for what they called an ICP. This was suppose to measure the pressure on her brain to see if it was what was causing the headaches. They shaved about 1/3 of her head and inserted probes that were connected to a monitor. She was in the critical care unit for two days while they did this procedure. The test showed that the pressure was normal range and confirmed that there was nothing surgically that could be done to ease the pain the tumor is causing. The only options are radiation and/or medicines. The only problem is all the medicine we have tried so far hasn't touched the pain. They said it would be a long road to find a combination of medicines to help. Right now she is taking 17 pills each night and about 6 in the mornings. We have an appointment at 9:50 in the morning with the oncologist and an appointment at 2:30 with the headache specialist. I pray we can find out something. We have been to the ER everyday for the last week just to get relief and are at the ends of our ropes. Callie just broke down crying hysterically. It's like this has all happened so fast and she is so exhausted. It all just hit her and she collapsed. I ask for your prayers for strength for us both.

Some wonderful friends of ours has decided to have a benefit supper and auction to help us out. It will be on December 13th at the Grace Temple Youth Building. That's at the location of the old American Legion building on Morrison Rd. past Pioneer Building Supply.
Everyone please come and see us. Oh and they are looking for a quilt to have for the Main item if anyone knows someone who would donate one, just let one of us know.
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Hey everyone..
Its callie this time. It is 2:10 am & mama is in bed. We got home about a hour ago from woodbury emergency room. [yes again, unfortunately] That is the only place I can go and get some type of relief. They are the only hospital who understands my high tolerance for medication.

I just thought I would let everyone in on my side of this whole situation, on how im feeling. As you know, its been ten weeks since the surgery. Ten weeks of complete and total heck. I have had a headache/migraine ever since that wednesday before the surgery. It hurts all day, everyday. My arms are bruised from top to bottom. Sometimes I break down and lose most of my strength. I just wish they could figure out what is causing it instead of argueing about it all. I have fallen into a sorry depression. As most of you know i am a very out going person... but this entire ten weeks I have sat in this house doing nothing because I feel so badly. I have lost many of my friends. Actually, most of them. My mama is my best friend & I do not know where I would be without her. She has been there with me through every step of the way. I love her so much & I pray she gets all the happiness she deserves.
 

With all the hospital bills, mama lost her car. So.. she was driving mine. Then a few days later.. mine breaks down. Now needing over $1000 dollars [we dont have] to fix it. Bills are stacking up. Then more hospitals, the more doctors, the more driving across state [with a car we dont have], the more gas, the more tests run, the more prescriptions, the more bills = the more money due. Well, with the severe headache, I had to quit school & my job, losing the extra money. So mama is having to hold down the fort alone & honestly.. its impossible. I know it. She doesnt show how hard it is, but I can see the worry. I have a car payment & car insurance that im unable to pay because im out of a job. With that, rent, food, life itself, everything.. Its basically nothing but a dream to get it all paid.They are trying to get me on disability but everyone knows how long that takes. Im just scared and worried for us both. I want to help so badly, but I cant get rid of this stupid headache, let alone work a job.

Im dreaming of the day God performs a miracle on me & gives me back a life I can live headache free. I pray for freedom from the pain everyday and for the strength to get through each day.  I pray for my nanny not to worry about me anymore and for her to get sleep instead of staying up all night in worry over me. I pray to gain my TRUE friends back. I pray for the people in worse pain than me get the relief they deserve. Most of all though, I pray for my mother. I pray she doesnt get tired of me and all my complaining. I pray we get through all these hard times together. She is my strength, my hope, my mama, & my best friend. I need her.

Please keep us both in your prayers. i love you all and I need some of my friends back. [like my aunt GG!!] lol

ps. me and mama are thinking about getting matching tattoos of something standing for strength and mother & daughter. something creative. if anyone finds anything... just let me know.

much love- callie elizabeth

Current Mood:
scared scared
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Well, we went to the Neuroscientist on Tuesday Morning after a quick trip to Woodbury ER on Monday night to try to get Callie some relief, to no avail I should say.  The Dr on Tuesday morning [ Dr. Brandes & Dr. Atkins] sent us immediately to Vanderbilt ER because Callie was in so much pain.  We spent the next 28 hours in the ER trying to talk the Doctors into giving Callie enough medicine to ease the pain. I had them call Dr. Brandes' office, which is who sent us there to begin with, that didn't help. We expained that Callie did not want narciotics, We didn't care if they gave her a Flinstone Vitamin, if it would just ease the pain, or make her sleep through it. We explained that the last time we were at Vanderbilt they gave her 50mg each of Benedryl and Phenergan to knock her out so that she could sleep through the pain. They wouldn't even give her that. After 28 hours of sitting up in a straight chair, I told them if they were not going to get her out of pain, we were ready to go home. Dr Brandes' office told us to come back there immediately. They started an IV in the office and gave her Benedryl, Ativan, and Thorozine, to try to get some relief for her. They also prescribed 7 new medicines to control the headaches severity. And some for what they called "Rescue Relief" when it gets really bad. They made her an emergency appointment on Monday with Dr. Tulapan [another Neurosurgeon at Vanderbilt who is suppose to be one of the best of the best out there] because Dr. Brandes was not happy with the first surgeon, Dr Weaver, and his actions. We see Dr. Tulapan Monday Morning at 9:50. I'm off to the pharmacy to see how it goes. The Frova that they have prescribed is 27.00 A PILL, and neither of the insurances will cover it so now it's paperwork time to see if we can get it preapproved.

ttyl - "the mama"
Current Mood:
tired tired
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Well it was a long night. We had to go to the ER again. Sometimes the pain gets to be more than Callie can handle, so we have to go and see if she can get relief. I guess 4mg Dialudid through and IV was enough. Me.... I would still be out ,but it's just enough to take the edge off the pain for her. She can still manage to "walk, talk and act like a regular lady" after all that. Lol. I just pray that each day is easier for her although I know deep in my heart it really tough. I just try to remain her strength when she has none of her own left, so please pray for both of us.

Tonjua

Current Mood:
worried worried
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Hey everyone, Tonjua here, Callie's Mom...

Just wanted to update everyone on Callie's health. In case you haven't heard Callie started having headaches in early Sept. on a Wed. After a couple of trips to different ER's and no help with the pain, she started having double vision and balance problems. By Saturday I took her to Murfreesboro ER and they ran a CT Scan on her head and seemed to think she had an enlarged gland that had the spinal fluid blocked causing increased pressure on her brain. They transported her to Vanderbilt Hospital immediately where a MRI was preformed early Sunday morning. Later that day the Neurologist came in to tell us that she actually had a brain tumor that was blocking the spinal fluid and that they was contacting the Neurosurgeons to come in and look at it on Monday Morning. Well about 11:45 Sunday night, they came in and woke us up to tell Callie not to eat or drink anything after midnight because they would be doing surgery in the morning. Eary Monday Morning, 4 am to be exact, they came in and started shaving places on Callies head to do a Stelth MRI. After that we was told that the actual surgery would not be performed till that afternoon so the doctors gave Callie some medicine to put her to sleep. Not ten minutes later, the nurses was there with the wheelchair to take her into the OR. The surgery took several hours and a hole was drilled between the inner and outer membrane of the brain to allow the fluid to drain. Dr Weaver (the neurosurgeon) said that because of where the tumor is located, they were not able to remove or even biopsy it. It is located deep within the brain and is surrounded by alot of nerves and arteries and was unfortunately way too risky. We thought everything was ok but Callie continued to have a headache. Every day in fact, for the past eight weeks. After several visits to Dr's we finally were able to get in to see Dr Jan Brandes who specializes in Neuroscience and headaches. We have found out that where the tumor is located in the cavity that is surrounded by pain receptors. The tumor had gotten so large in September that it starting putting pressure on these pain receptors causing the severe headaches. There is nothing really that can be done to get rid of the headaches since the tumor is inoperatable, so they are trying to ease the pain some by medications. The only problem is she is still about -on an average- an eight on the pain scale even with the meds. We have an appointment with a Neuro-Oncologist on November 14th to see if radiation can reduce the tumor enough to relieve some of the pain. Due to the pain she is unable to work and has had to withdraw from college which has made her fallen into a "rut". With all the hospital bills, and without the extra money from her job, times are really hard. We both are just trying to make it through each day in the hopes of some good news. The doctors have mentioned putting her on disability, so Im trying to take the steps to get that accomplished. All your prayers have been very much appreciated and please continue to keep them coming.

We will keep posting as we continue to get news. -Tonjua
Current Mood:
worried worried
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