Kathleen

 

 

 

 

 

Thursday, October 18, 2007 19:50 -0700

 

For those of you who have asked here are some of the early days in more detail

Thursday, February 24, 2005 

Well, I have been remiss at not updated this site more often.  In 2004 Kathleen spent weeks well and weeks sick until school finished for the summer and then she had her tonsils removed.   She spent 3 weeks recovering from that and then was well for a while, went to Camp Discovery for the second time and learned from sharing with her friends there.  She started marching band camp and on day 2 had to have surgery to remove a crusted area of infection in her nasal cavity, the infection turned out to be an MRSA.  So, for 3 weeks she had to spend an hour morning and night with a nebulizer.  Since then she has been well, even the migraines have decreased to the point that the neurologist said "just call me if you need me".  Today marks the 2nd year with no signs of a reoccurrence, which is great news.

Thursday, April 1 

Well.....  We went to England over spring Break to visit relatives, and Kathleen went down with tonsillitis and ulcers in the back of her throat, sending her to Leeds Infirmary for some of her vacation.  Not what we had planned and not nearly as much fun as we had anticipated.  We did manage a few days of visiting and to play in the snow and let off fireworks before Kathleen became ill.  She was released from the hospital in time for our flight home and she made it back to school for 2 days before becoming sick again.  She is now on more and stronger anti-biotics and back at school again today, and we are hoping that goes well.  When asked what she wanted for her birthday, Kathleen said "To be well"  We go back to our general doctor tomorrow for a follow-up and back to the Pediatric Neurologist on April 6.

 

Wednesday, January 14 

Kathleen had her 3 monthly follo-up with Dr Genecov, the reconstructive surgeon, he was very pleased with her progress and said she will not need to come back to him for a year.

Kathleen saw a pediatric neurologist on Dec 8.  She has migraines, either as a result of the surgery or brought on earlier by the surgery or just because she would have got them anyway.  Apparently they are not uncommon after major cranial surgery.  She is taking beta blocker daily and has a regime of medicine to test out and keep notes on to determine the most effective medications for her.  We will return for a follow-up in a couple of months. School, noise and stress are still the most likely to produce headaches.

In the meantime she is getting ready for UIL academic competition at the end of January, and solo and ensemble in February along with her normal school work.  She plans on playing soccer in the upcoming spring season.    Mary

Monday, November 3 

Kathleen is still experiencing some headaches.  She has been referred to a pediatric neurologist.  The appointment is not until December, so we are taking the time to log her headaches and their circumstances.  The biopsy taken at the last procedure was clear of any reoccurrence of the tumor.  

Kathleen is winding up the fall soccer season and getting ready for All-Region Band Auditions and going to school.  Mary

Wednesday, October 8

Kathleen had an outpatient procedure yesterday to check out and break up some of the scar tissue in her nasal cavity, no signs of any tumor were found.  The doctor took a couple of samples that will be cultured, one had a long latin name but as far as I can understand turned out to be snot, the other was scar tissue.  We are hoping that this procedure will reduce or eliminate the headaches that she has been getting.  The surgery went well, no incisions and no apparent bruising.  She went into surgery at 9:30 am and by 2 pm we were home and she was eating a cheeseburger - oh to be young!.  

Today is "State Fair Day" in Rockwall schools, so there is no school, but Kathleen will take the rest of the week off to recover and complete her homework assignments.  Mary

 

Wednesday, August 6

Kathleen went for a follow-up appointment yesterday, she had a CT Scan done and the ENT doctor used a scope to look in her nasal cavities.  The good news is that there is no sign of any reoccurrence of the tumor, and that the bones in her head have healed and are back to full strength.  She is suffering from some headaches and has some medications to deal with this problem, if the medications are not enough she may have to have an out-patient procedure to take out some of the scar tissue that appears to be causing the headaches. This would be a short simple procedure with no incisions, let's hope it will not be needed. Mary

Thursday, July 24

Well Kathleen made it back from camp, she had a great time.  Thanks to the American Cancer Society which organized and paid for the whole camp, the counselors, the volunteers and all those people and companies that donated items to the camp.  Above you can see her "Prom Picture", on the last night they had a dance, make-up, dresses, flowers and photos all included.  Kathleen was allowed physical activities here that she could not do at home, she enjoyed riding a horse, a jello and cream fight and climbing the rock wall, as well as meeting many new friends.  Mary

Tuesday, July 15

On Sunday we took Kathleen back to Medical City, but this time she was headed to Camp Discovery.  This is a camp provided free of charge by the American Cancer Society for children who have had cancer and related illnesses.  The camp is in Kerrville, Texas  Mary

 

Wednesday, May 07

Yesterday we went for a follow-up appointment with Dr. Genecov and Dr. Trone.  Dr. Genecov said that she is healing very well, with no problems in her eye location.  She is still restricted to no physical activities, this might be lifted at the next visit, but I am still nervous.  Dr. Trone looked at her nasal cavity with a scope and said that apart from some scar tissue the inside looks good and there is no sign of any re-occurrence of the tumour. Kathleen will have appointments every 3 months for at least 3 years, complete with scope check-outs and occasional CT scans to ensure that everything continues to be OK.  The next doctor's visit with a CT scan before hand is Aug 5.  School continues, Kathleen still finds it rather noisy, we have to make it through until June 6 this year. Mary

Tuesday, April 22

Kathleen had a short week at school last week because they had Good Friday off.  The first days were rather noisy and hectic for her, she spends some time the library instead of going to PE, so there have some good days and some not so good days.  This week she has started going to Band and playing her clarinet again, she is a little rusty and her lip is still a bit tender when stretched but time will fix both of these problems.  This week Kathleen is still trying to readjust to the noise level at school, she is somewhat more sensitive to noise than before, and was a little down today, we seem to have had more than our share of bugs and colds this year.  The next doctor's visit is May 6.   Mary

 

Thursday, April 10

Kathleen is really looking forward to going back to school on Monday! Today we went to the Ophthalmologist and had her eyes checked out and got a new prescription for her glasses.  Then having some spare time but not enough to go home before heading to her hair appointment, we went to Kohls and she had fun choosing, trying on and buying new clothes. Kathleen has most of her strength back now and is practicing getting up early in the morning ready for next week.  Hopefully, we can get the photos from her birthday party developed, the digital camera is broken and we can put some of those up. By the way, please watch for weather advisories on her birthday party days, her track record is not good. Mary

Tuesday, April 1

Kathleen has been told she can go back to school on Monday April 14th, and she can wear her glasses without the tape.  The rest of us are recovering from our strep attack. Mary

Monday, Mar 31

Kathleen is doing much better, almost bouncing off the walls and has started on the backlog of homework.  On Saturday I took Shawn to the doctors because he had been being ill, and off school for odd days, and I didn't want anything passed back to Kathleen.  They decided he had probably  not got rid of the strep throat he had in February. so he was tested and lo and behold it was positive.  I thought for a second and then said "you had better test me too", mine was also positive.  Then we got Mick and Nigel to the doctors and had them tested and they also both had strep.  What a household !! Now we are all on antibiotics and feeling much better. We are going to try and get a new photo of Kathleen for the web site since Kathleen looks so great now !  Mary

Thursday, Mar 27

Kathleen came home this evening. .All the tests except the Mycoplasma pneumoniae test came back negative so she had "walking pneumonia" for which she is on antibiotics.  We go back to the Cranio-Facial Reconstructive surgeon on Tuesday for a follow-up and to discuss the tear-duct stint.  Now, after a cup of coffee and a treat, I am off to sleep in my comfy bed.  Mary

Wednesday, Mar 26

After the spinal tap yesterday Kathleen started to improve. She was quite woozy for a while (very 60's psychedelic) but after she started to regain control of her senses (and have less fingers...) she  became more like her normal bouncy self. Her temperature came down and most of aches went away. Mary stayed with her last night and I struggled home. She was visited by the Crano-facial Doctor and the brain surgeon this morning and a mystery doctor (Mary had left for her college class and I had not got away from work). According to Kathleen's exhaustive report they all thought she was doing well and all analysis so far had been negative (e.g. she did not have mono), She was so well we went to the activity room and had a game of one-handed (left) table football (I won!) and left-handed air hockey (I lost! and my arm now aches). Her head still aches but overall she seems great. She will remain in until the results from the spinal tap culture have arrived but I expect her home late tomorrow evening. Mary gets to spend another night on the very narrow, very firm bed. Mick

Tuesday, Mar 25

Over the weekend Kathleen ran a fever which went up and down and she  threw up her lunch a couple of times.  Finally by Monday evening with a temperature of 102 deg F that we did not seem to be able to get under control, and aches all over her body, I took her to the Emergency Room. We got there at 9:30pm and at 4am Tuesday morning we were admitted and  in a room.  When you have time ask her about "life in the emergency room at night".   Her condition has not yet been fully diagnosed, we have had a CT scan, chest x-ray, blood tests etc,,, we generally suspect that she has flu or a viral infection but because of the extent of her surgery last month everyone is being conservative and making sure it is not in some way related to that.  This evening as I left her in her father's tender care, she was preparing to have another spinal tap, which they will "grow" for 48 hours, during which time she will stay in hospital.    We will keep you posted. Mary

Hospital

Kathleen will be at Medical City Hospital - Dallas   
Forest Lane & Central Dallas, Telephone: (972) 566-7000

Once she is in a room on the Pediatric Floor we will post the room number and you can use this link "send email to a patient" , so that you can send Kathleen email.  The hospital will print it and read it to her during business hours.

Mary

Friday, Mar 21

Kathleen continues to be upbeat and recover from the surgery, although sleeps almost as much as the teenage boys!  She has started homebound schooling, which is going well and begun to do homework again.  She finds it difficult to concentrate for long periods of time.  We had a slight setback on Monday when the "stint" to keep her left tear-duct open came out.  We have had a couple of doctor's visit's this week to address that and it will likely require another outpatient procedure to replace it.  Also, we are working on finding her some new glasses that do not require tape on her forehead to keep them from resting on the sides of her nose.  Mary

Friday, Mar 14

Kathleen went to the doctors yesterday for a check-up, they both declared her progress good, Kathleen was not so keen on their attempts to examine their handiwork.  She still will be sore and recovering for weeks and months to come but is on the right track.  She will be home from school until at least early April, depending on how she does, we have homebound schooling starting on March 17, when the others go back after Spring Break. Mary

Saturday, Mar 08

Kathleen has been home for 5 days and is progressing well.  The swelling and bruising are fading away and the band of hair on her head is regrowing, although she is still a little tired not quite back to her normal bouncing self yet, and on pain medication.. She has enjoyed visits from her friends and neighbors and even went for a short walk in the garden on Friday when the weather was great.   We go back to the Doctors on Thursday 13, March for a follow up. Mary

Monday, Mar 03

Kathleen was released from the hospital this morning and is now settled in her new canopy bed.  The swelling is going down and she is eating more and starting to get about.  Taping her glasses to her forehead, they are not to rest on her nose until it has healed gives her a "Harry Potterish" look.  Right now we are all exhausted from making it home.  I know my email was broken over the weekend but it seems to be working again now, so if you had emails bounce back please resend them. Mary 

Saturday Mar 01

Kathleen had lots of visitors yesterday, sat up in a chair and took a walk down the hall to the teen room. Thanks for all the cookies, brownies, clothes, balloons, flowers and soft toys.  In the evening she and I watched a movie we had borrowed from the teen room.  The pathology report on the actual tumor did not vary from the original one from the biopsy.  The tumor was reported to be 40 grams and the size of a softball (slightly larger than a cricket ball).  The oncologist is not expecting any further treatment beyond regular and frequent scans and check-ups to ensure that nothing has returned.  

Saturday, was another improving day, she slept for 7 hours during the night with little interruption and .we all felt better for it.  She had more visitors including her brothers and ate more food.  The swelling is starting to decrease on the right-hand side of her face and she is opening her eyes and wearing her glasses.      Mary

Thursday, 27 Feb 

Kathleen spent Monday and Tuesday night in the Pediatric Intensive Care Unit and went to her own room on the Pediatric floor on Wednesday morning.

On Tuesday evening Kathleen had another MRI done, this took almost an hour but the surgeons were pleased with what they saw.  Somebody needs to invent a mobile MRI so that sick patients do not have to be wheeled around the hospital and then moved from on bed to another for an MRI.

She had a bit of a rough night last night but in the end we got a prescription for more morphine through the IV as the oral pain killers just weren't cutting it.  However now she is improving hourly, when I spoke to her just now she was bugging her father to feed her jello (jelly), and was sitting up in a chair and trying to open her eyes.

Currently the doctors are expecting to send her home on Sunday, but before they will she must, eat, drink, take oral pain medication, walk and open her eyes.  Or maybe open her eyes and walk..  More later, assuming no more ice storms or internet access outages.  Mary

Post Surgery Monday 24 Feb

Kathleen's surgeon's came out of surgery at 4:30pm CST, 8 and a half hours after we left her with them. The surgeons were very positively beaming when they came into the waiting room.

The surgery went as well as they expected and none of the extra maybe we will need to... happened.

They believe that they have removed all of the tumor. She may need a little more reconstructive surgery later, but that is a wait and see option.

We visited with her briefly on her way to the Pediatric Intensive Care Unit, she opened her eyes and talked to us, and again once they had her settled. When it was time for a shift change and we had to leave the unit for an hour we looked at the weather and decided it was a good time to come home. We almost made it home without incident but a little Mazda sports car decided to stop on the hill and slither its way up, causing us and everyone else behind them to do the same. The Police came out of the adjacent Police Station to watch!

While we were waiting for Kathleen to get settled in the ICU we also had a fire in the south tower of the hospital, we were in the North Tower, I guess it wasn't too bad as nobody evacuated the building and I didn't see any Fire Trucks. When I was reading the paper while waiting for Kathleen's surgery I found out that one of my lecturer's who had a stoke 10 days ago had died.

So now we are home and exhausted and having eaten are off to bed to wait for the ice and snow to clear so we can go back in and visit Kathleen.

Thanks for all you thoughts, prayers and support.

Mary & Michael

Schedule

Everything is set for the surgery tomorrow Monday 24th February, 2003 at 7:30 am at Medical City, Dallas. Kathleen should be discharged on the 29th and will need about five weeks at home recovering.

 

Specialist Team

Dr Timothy Trone	Otolaryngology
Dr. David Genecov	Craniofacial Surgeon
Dr, Bradley Weprin	Neurosurgeon
Dr Arlynn Mulne	Oncologist

Hospital

Kathleen will be at Medical City Hospital - Dallas   
Forest Lane & Central Dallas, Telephone: (972) 566-7000

Once she is in a room on the Pediatric Floor we will post the room number and you can use this link "send email to a patient" , so that you can send Kathleen email.  The hospital will print it and read it to her during business hours.

Background

At the end of December Kathleen was receiving treatment for allergies she had been suffering with for the last year. The doctor discovered she had a polyp in the nasal passage and at the beginning of the year she had a head CAT scan.

 

The CAT scan showed that that the nasal passages on the left side of her face were completely blocked. A week later she underwent a biopsy, which showed that she had a slow-growing tumor that was pressing on her left eye orbit.

 

Current Status

 

Kathleen has had a barrage of tests, including MRI, spinal tap and bone marrow and the results are that the tumor has not spread to any other parts of the body.  It extends from the nasal passage to surrounding tissue on the left side of her face. The current diagnosis is that the tumour is not malignant and is a myxoid chondrosarcoma. The oncologist believes it is a cell that has swapped chromosomes 9 and 22.

The bad news is that it will take major surgery to remove the tumor and possibly radiation treatment/chemo to remove any lingering cells. 

Through out all this Kathleen has been amazingly upbeat and an inspiration to both Mary and myself. We ask that you remember her in your thoughts and prayers.

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