Kathleen 2013

I am sorry to say we will be updating this page again


Kathleen graduates cum laude from UNT.

May 2013

Monday June 3, 2013 -Time to catch up since the last time I updated this page was July 2011.  History will be below.

Last week Kathleen saw a new oncologist and he wants her to go to Sloane Kettering in New York for a second opinion, but it seems likely that more surgery will be required.  We are working on the health insurance for coverage and logistics of the trip.


2013- May many unresolved medical problems made Kathleen's last semester at UNT difficult, but despite this she graduated cum laude on May 11!
2013 - Spring Break surgery to "clean out" the tear duct on her left eye, resulted in a drainage tube, and a surprise diagnosis that there was cancer in the tissue removed. 
2012 - Endometriosis,  the diagnosis from last spring continues to be a problem.  Kathleen has many different medications and finally surgery in January 2013 right before heading back to college for her final semester,  The surgeon says that endometriosis is not the cause of her problems.  The verdict on this is still out as it is yet to be resolved, she has abdominal pain and GI symptoms but no diagnosis.
2011 - Well into the radiation treatment, Kathleen developed severe back pain, after an MRI and some extended discussions the conclusion was that this is muscular and physical therapy is required.  The day we all decided that Kathleen should postpone returning to school until the Spring semester, we discover that the radiation has damaged her left cornea, and her vision is now so bad she cannot really read.  She also lost all her eye lashes on the left eye and half of her eyebrow, not to mention the large clumps of hair that fell out!  Physical therapy 2 to 3 times a week and a a cornea specialist through the fall and Kathleen is doing much better.  We all head to Big Bend for the week before Christmas and we seem to be getting back to normal.  Her eyebrow is back an so is most of the other hair, but the eye is very slow to recover.



Kathleen - 2011

I decided to re-organize this page with the latest information at the top.  Such a novel idea, it must because it has not reached 100 degrees in Dallas yet today.

Pre-2005 website

Tuesday July 26 - Kathleen is now in the 4th week of radiation therapy.  Her face is a little sun burnt, her eyelid a little swollen and a few strands of hair have fallen out, but she is holding up well and her spirits are good.  She is planning for her return to college in the fall and working to build up her stamina to be able to walk around the campus.  At the end of last week her new glasses came in, she now can see with her left eye, before the prescription was so out of date that it was all fuzzy, they also go dark in the sun so it helps protect the eye.  She has cream for her skin, ointment and drops for her eye and a hat for her head!
July 5 - First day after the July 4th weekend and we are off to Dallas to start the radiation treatment.  Not too bad, it takes about 10 minutes and 40 minutes to drive each way, plus they do x-rays and blood work sometimes.
Rest of  June- One day the ophthalmologist called and said, we have been discussing Kathleen at tumor conference and we believe a short course of  low dose radiation therapy will be beneficial for Kathleen.  We were scheduled to go to Colorado for a wedding in Denver and a couple of weeks away from the Texas summer.  Before we left Kathleen saw the radiation oncologist and we discovered that short was not 10 days but 5 - 6 weeks, 5 days a week.  She was fitted with a mask, she photo above, it makes sure the head is in exactly the same place every day, and off we went while they worked on a plan for her radiation.  The wedding was great, it was not so cool in Colorado as we thought, but much better than Texas.
Rest of  May and into June- Kathleen slowly recovered, Mick went to Berlin and England and back, the Mavericks won the NBA Championship
Wednesday May 18- Well, I have been remiss and not updated this site for a few days, but the good news is that Kathleen is getting better and stronger each day, and taking less pain pills.  We have been to the ophthalmic surgeon and he is pleased with her progress, and yesterday we went to the craniofacial surgeon and they removed the staples in her scalp, he was also pleased with Kathleen's progress.  Staple removal was not a fun process but Kathleen is feeling much better now they are gone, and she can sleep on her side.  Last night, Kathleen, Mary, Shawn & Nigel went to watch the Mavericks beat the Thunder, an awesome game.  Most of today was spent sleeping to recover from yesterday!

    Some of the staples!

Photos below from the Mavs game, some are a bit fuzzy, I'd tell you that it was photographic art, but it was really me trying to learn to use the android camera, but they capture the spirit!

Sunday May 8 - This morning Kathleen's surgeon came in and asked if she was ready to go home, with no hesitation she gave a resounding "Yes". So now we are home, The MAVS are winning and I got chocolate covered strawberries from Shawn for Mother's day.  All is good.
Saturday May 7 - Kathleen is doing better this morning.  Left her in Nigel's capable care and then Mick took over this afternoon.  She walked twice around the ward, ate some dinner, watched some TV and this evening took a shower.  Now I'm hoping for a peaceful night!
Friday May 6, 10am - I just left the hospital Kathleen had a relatively quiet night, well quiet for a hospital, why do they have to take blood at 5am?.  She is progressing well, will not be coming home today as the pain is not adequately under control for that.  They are still cleaning the incision, many staples, every 12 hours and that is causing quite a bit of additional pain. Her goal today is to walk to the hallway and back to the bed.

6:30pm - Seems Katha has taken a little walk today, which is good. I shall head to the hospital in about an hour, in time to watch the Mavs game on TV there, and spend the night.

11:45 - Settling down for another night in the hospital.  Today Kathleen walked around the nurses station and ate a grilled cheese sandwich.  They are still cleaning the incision and that is causing pain on top of an already very sore head.  no word on coming home yet.  Mavs won though, 3-0 over the Lakers!

Thursday May 5 - Kathleen has had all the lines except one IV removed.  She has been moved out of ICU to a room.  She is in isolation because she has previously had an MRSA, she does NOT currently have any infection.  There is talk that she might come home tomorrow or the day after.  I am currently getting dinner, then a nap so that I can head into the hospital for the overnight shift.
Wednesday May 4 - Surgery started before 8am.  Expected out between 2pm and 4pm this afternoon.

12:46 pm.  Just talked to the surgeons. The main tumor behind the eye has been removed and the bone of the eye socket reconstructed, and her head put back together again.  Just a little more tissue sampling to be done, the doctors believe that it is scar tissue not tumor but are sampling to be 100% sure.  When that is done she will come out of surgery into recovery for an hour or so and then off to PICU.

1:43 pm .  Just talked to surgeon.  Surgery complete, very successful. 

7:44 pm.   Kathleen sleeping in PICU, with the help of strong, strong pain medication.  We are home to get a full night's sleep ready for tomorrow.  We expect her to be moved out of PICU to a room sometime Thursday morning.  Right now she cannot see visitors or get anything from outside.  It is possible that she will be home by the weekend!
Tuesday May 3 - Appointments for photos, craniofacial reconstructive surgeon and hospital pre-admittance processing
Monday May 2 - Physical at the GP, appointment with the Ophthalmic surgeon and a  surprise CT scan.
April, Kathleen has a birthday, makes a trip to visit her friends in Denton while we are in wait mode.    Mid April, Kathleen develops a sudden severe abdominal pain.  Two week later, and as many tests as you can image including a colonoscopy/EGD  and a laparoscopy the doctors are convinced, at least at this point, that there is no serious problem that would prevent the surgery from proceeding on Wednesday.

Since the last website update was 2005, here is a summary of the time from then to 2010.

Through some continuing medical issues Kathleen graduated from Rockwall High School in the top ten. In the Fall Kathleen. started at The university of North Texas in Denton to study Biology.  She is doing well at University, having fun and getting on the Dean's and President's lists.  At Spring Break 2009 Kathleen came home and had a small bump on her left eyelid, we visited the local doctors, and  progressed to a specialist, a CT scan and a couple more specialists, to eventually be told it was a "dropped tear gland". Things continued on until Kathleen went for her followed up with the doctor in the summer of 2010 who ordered an MRI, the radiologist looked at the scan and said I don't' like the tissue that is pressing on her left eyeball (technically called a globe).  So off to another specialist, a CT scan and then a biopsy, because with her history we had to be sure.  Nope, just inflammation came the conclusion, so back to college Kathleen went.  However, the biopsy site started to cause pain and the doctor said maybe another biopsy over the Christmas Holidays was in order. So, early in the New Year we went to get the results of the second biopsy to be told it was a reoccurrence of the tumor that she had in 2003.  Kathleen takes a medical leave of absence for the Spring semester.  The Ophthalmic specialist sent her to MD Anderson in Houston for a second opinion, so during the second half of January and first half of February Kathleen and Mary made three trips to Houston, for the normal battery of MRI, CT and PET scans and specialist consults.  A nice day at Houston zoo, and a hairy ride through some icy freeways included in the trips. The conclusion is similar to that from the Dallas team and that surgery alone, not radiation or chemo is the best path forward.  Houston raise the issue as to whether another spot on the inside of her eye by the nose is tumor or scar tissue form the previous surgeries.  After a bunch of frustrating phone calls and insurance and scheduling issue we get a surgery date of May 4.  We have a craniofacial reconstructive surgeon, a neurosurgeon, the Ophthalmic and the ENT surgeon.