About Me

Kathryn Bradley was born on 2/5/91 and given a Hawaiian name Kahiwalani meaning "Gift From Heaven" She has been a special gift from the day she was born.

Saturday, December 31, 2011

Surgery/Tracheotomy


Well they were right on time.  Kathryn was taken to surgery at 11am and was back in her room before 12:30.  The doctor was very pleased.  He said it went well and that he didn’t have to cut the thyroid.  He was able to just move the thyroid over while he placed the tube in.  The tube went in easily.  He also said the vocal chords looked a swollen.  They did go through a great deal of trauma so this is to be expected.  Also may mean they are not damaged.
She has been awake in and out.  She has been writing to us.  The staff seem to be amazed at how well she writes with her left hand (non-dominant) while sedated.  They just don’t know how determined this girl can be.  Kathryn is calm and comfortable.  In a couple of days she will be well healed. 

Never thought I would be happy to have my daughter get a tracheotomy.  I am so we will be able to hug, cuddle, kiss and talk.  Hopefully she will be able to enjoy food too.  Time will tell.

Surgery Day



So yesterday Kathryn only had one word for the surgeon “careful”.  She wants him to be careful.  After talking to us fro 45 minutes or more I think he will be extra “careful”.  Scott and he talked a while about cars and the other medical guys that Scott runs the track with.  It was a great connection.  Our day nurse sure made sure that we got to see the surgeon Dr. Hamill.  I think she would have chased him down.  I’m sure she expressed our need to get this done and not wait for Monday.  I think Kathryn’s Doctor (from Mary Bridge) expressed his concern too.  Everyone is doing their best to get Kathryn home ASAP but within safe measures.

We had another great nurse Roberta last night.  We went down to eat while Roberta got Kathryn all tucked in to bed.  She had a good night sleep.  All food off by 2 am or when the bag runs out which ever one comes first.  A bag of platelets given just an hour before surgery.  She is still eating them up.  So here we go….

Friday, December 30, 2011

Alert with less Sedation



Kathryn had very little of her sedation drugs today.  For an hour and a half they were completely shut off.  She has tolerated it very well.  She has been up all day listening to doctors and writing us lots of notes.  She told Dad to bring her phone last night.  Today she requested her movies and watched her favorite one today (ELF).  She also asked about what day it is and the time.  She is still the smart one we all know and love. 
It is 6 pm and we are waiting to hear from the doctor who would be doing the tracheotomy.  Still has not stopped by.  It is difficult to wait but he will be here and we will let you know when the procedure will happen.  That was a question of Kathryn’s today.  She wanted to know if it was today.  She just wants to get it over and get home ASAP. 
I must say she is the favorite patient on the floor.  They all love her and treat her so well.  Her nurses, doctor and other staff from the Mary Bridge clinic have been over to check on her too.  They have known Kathryn for a long time.  I believe Kathryn is the one who got Dr. Irwin to go to Camp Goodtimes this past summer. 
So many of you have said she has inspired you and you are so glad you have met her.  She is an inspiration.  As she fights this she continues to stay strong.  She is amazing.  She holds it together better than any of us.  Believe me she is fighting and fighting with all of her might. 
Thank you for all of your loving comments.  We appreciate all of them.

Just met Dr. Hamill (6:30pm) Yeah! Kathryn will have the tracheotomy tomorrow.  It is scheduled for 11 am but he also told us that could be 1 pm hospital time.  Kathryn will have her mouth and face back.  No she won’t be eating real food yet or be able to talk right away but in a few days she will be able to talk and maybe eat real food too. 
This is all great news.  The sooner this is done the sooner we can take Kathryn home.  By the way, Our Christmas tree is actually growing.  It is taking in a quart of water a day and the branches are growing longer and sticking out.  I have never heard of such a thing.  Must be from all the good vibes it picked up at her Christmas Party.  It knows we are still waiting to celebrate Christmas.  

Thursday, December 29, 2011

Trec/pic line/Communicate

We are enjoying reading the comments.  Thank you everyone for sharing with us.  They have all been a great uplift to our days here.

Kathryn had an IV removed last night because it was bothering her and the nurse said they didn’t really need it any longer.  The second IV was removed today because it stopped working.  So in place they put in a pic line which is more comfortable and will last like a port.  Yes, she has a port too but they need more than that one line of access.  Right after her seizer she had 5 pumps running stuff into her body so port just wasn’t enough.

The other issue is that they will not be able to do the tracheotomy the quick and easy way.  Or maybe I should call it the less invasive way.  Her airway is so small because she is so tiny they just don’t think it would be a good idea.  That means surgery which always has its risks.  We will talk with docs tomorrow about all of this. 

Good News too!  Kathryn was able to communicate ideas today through writing.  Her writing is difficult but she did it.  It really helps to be able to get your input in or your questions asked.  This was a big step and a helpful one.  On a lighter note, the second thing she wrote was two my dad as he was heading home tonight “Bring my phone”. We all got a little laughter out of this which was needed.

A tracheotomy

A tracheotomy  --
This is what we are looking at now.  Since Kathryn immediately felt as though she couldn’t breath when the tube was removed yesterday they believe there is a problem with her upper airway.  A tracheotomy allows a person to breath by bypassing the upper airway.  They would put a short tube in her throat and there would be a hole in the middle of her throat about where that “u” shape part of the bone is on your neck.  She probably would be able to breath without a machine and this would free her up to do more things.  As it is now the tube goes in her mouth and a long ways down her throat.  This is uncomfortable, ties her to a machine and does not give her the ability to talk.  The tracheotomy would give her the ability to talk and right now communication is very frustrating.  Also being on the breathing tube is so uncomfortable that she is on constant pain and sedation medications.  She is aware and can nod but being totally aware would be much better.

This may be done early in the morning in the room or the next day.  Or it may be done in the OR early next week.  We believe the sooner the better and I think the doc feels the same.  This doesn’t have to be a permanent deal but does allow a chance for them to also evaluate the upper airway to see what is the true issue. 

The MRI also shows some improvement but also some progression.  Unfortunately the progression is in a dangerous area of the brain.  This area is right by the brainstem which controls all of our auto functions such as breathing, swallowing and on and on.  This could be the real issue of the airway.  Man has no way to control this at this point so pray God heals Kathryn by reversing or stopping this tumor progression.

We came in here to get her sodium level up.  Seemed so simple at the time and now we are a week into ICU and looking at 5 or more days.  So, don’t take for granted the ones you love.  


Wednesday, December 28, 2011

New breathing tube



Well the outcome was not what we wanted.  When the tube came out she could not fully breath.  They had to put a mask over her face that is connected to a pump that is compressed manually.  Her airway would not open.  Her finger nails turned purple as well as her cheeks but they kept air going to her.   An anesthesiologist was called in and he inserted the new breathing tube with ease.  We are happy that the doctor called the specialist so the tube could be placed in the first try and not the third like the other day.  Less trauma on Kathryn’s body.  So this puts us on a couple of days of rest and just watching for sure.  They may try again in 2 or 3 days.  They really aren’t sure why she wasn’t able to breathe.  It could be more complicated.  It could be that she  doesn’t have the ability to clear her airway or there was just too much junk in the airway and she couldn’t get it all out.  We don’t know.

Otherwise her counts are good with the exception of the platelets.  Platelets are an easy fix.


Tube removal


Kathryn had a good morning with a breathing test around 4am.  It ran for an hour and she did great!  She is an A+ breather.  That is only one of the three parts needed to pass.  The second part was to pass the test from the blood drawn from an artery.  I’m not sure what all they test but they check the oxygen in the blood and other things.  She passed this too!  So far a 4.0.  The third test is fro the doctor to approve of her chest x-ray.  Finally we got his call back with a all clear and ready to go.  That means her lungs look good and the tube can be removed.  We are just waiting for this to be done and it is now 11:30am on 12/28.  The feeding tube will remain because her throat will more than likely be irritated so eating (even Camp food) could be a challenge. 

Tuesday, December 27, 2011

End of Dec 27th




Not a whole lot to report.  Kathryn is doing fine.  She did get a feeding tube put in place so she can get some nutrition.  I must say the staff here have been great.  All of them really care and are very gentle.  One nurse went home and knew she wouldn’t be back for a few days so she called just to check on Kathryn.  This girl has a lot of love coming her way. 
Let’s all pray for her to pass the breathing test tomorrow with flying colors.  Her monitor right now looks great.  She is relaxed and sleeping soundly.  Good night.

December 27th


It is December 27th at noon and we are still in the ICU.  Kathryn did not pass the 4 am breathing test.  She did ok but the breathing was too shallow.  They tried the test again around 9:30 am but she fell asleep so they stopped it only a few minutes in.  Another breathing test at 10:15.  She did very well for a long time with just a little bit of assistance from the pump.  When they turned it way down she still was breathing fine but it became more shallow and hence didn’t pass the test.  It was a good exercise for her lungs to work pretty much on their own.  She was taken completely off of all pain meds and sedatives for this last test.  During the other tests they were reduced to almost nothing.  She did great off of the meds but then wanted to be back on the pain med around 11:45am. 
It must be so uncomfortable to have all these tubs and wires.  Yesterday they had 5 IV pumps working and a breathing machine.  Now only two pumps are running but all the IV needles are still in.  Of course those don’t come out until you get released.  She is able to wipe her own face.  This is really good because it shows that she is aware of the tubes and knows not to tug on them.  She is very aware and answers all questions with nods.  She can’t speak because of the breathing tube.  I’m sure she will be so happy when that tube is gone.  Maybe tomorrow.
Her blood work is looking good.  The only thing that seems to be going down is her platelet count.  This has been an on going problem since the first of November.  The doc said we can always give a transfusion so he isn’t too worried about this.  Hey, it just may need to be a weekly deal. 
We really appreciate all of the love that has been sent our way.  We love reading your messages.  It really keeps us going.  Thank you!

Current hospital stay as of 12/26


On Friday (12/23) we had labs drawn and sent to Houston to the Burzynski clinic as usual.  We received a phone call from the doctor on call there and she was very concerned about the low level of sodium.  Kathryn’s level was 120 at the time.  She said we needed to go into the hospital and get a transfusion for this.  I called the Mary Bridge clinic and they had us come in.  They repeated the labs thinking it may be an error since her sodium level was 145 on Wednesday, which is a perfect normal level.  The repeat labs came out the same.  Kathryn had been drinking a great deal of fluids on Thursday and she was on a low sodium diet.  They thought maybe her sodium would adjust itself if we just with held fluids and didn’t restrict her sodium.   We tested her sodium again in the morning of  12/24.  It was now 119 so we were told to head to the emergency room.  We arrived around 11am.  Now the doctor there didn’t believe the 119 level because he said people at this level are usually incoherent  and have had or having a seizer.  He ran the test again and it came out 113 so she was admitted.  They also did the MRI since we had it on the schedule for the 28th.  This way they would also have a current MRI to see the big picture.  All day Saturday she was doing fine.   She did have this nagging cough and  it was not getting better.  The sodium level was coming up but then they slowed it down because it came up too fast.  She was hoping to go home on Saturday night so she would be home for Christmas but that was not going to happen.  She had a couple of tears but realized that it was for the best.  On Sunday (Christmas Day) she was still doing very well with exception of the cough.  Her sodium was not coming up well at all so they ordered sodium tablets and .9% saline to go with the very slow drip of 3% saline..  She was still doing well.  I snuggled on the bed with her.  She shared her dinner with me in fear that I had not eaten.  Then around 7:30 when all seemed well she started having a seizer.  Scott had just headed out for Home.  I told Richard she was having a seizer and to get help.  I yelled out Molly the nurse’s name as she had just left the room.  They were there fast and went in to action.  Richard grabbed Scott who hadn’t even made it onto the elevator.  Her first seizer lasted at most one minute.  As she was calming down she started to go into another seizer.  This time they were really ready with drugs to stop the seizer.  This one only lasted a few seconds (15).  But she could not protect her airway and they had to sedate her and put a breathing tube down her throat.  She has been sedated from that point one.  Things calmed around 9:30.  They did a chest xray to make sure the tube was in correctly and also a CT scan to see if anything changed from the time of the MRI.  No changes so that is good. 
Let me tell you it was terrifying watching my child have a seizer.  She was sitting up and clinching teeth and two little fist and hard as she could.  She was shacking violently and all I could do was try my best to comfort her.   It was difficult to watch.  Then they stuffed the bite tool into her mouth so she wouldn’t bite her tongue.  They had to hold her head tight so they could get the oxygen mask on her to keep her breathing.  She had so much stuff in her lungs and throat that she could not clear it out.  They calmed her quickly with sedation drugs.  It took three tries to get the tube down her throat but they had her in a state of mind by then that she really didn’t feel it .  They got her comfortable and she has been doing well since. 
Now it is exactly 24 hours since her seizer and she is doing well. She is resting well and taking some breaths on her own.  The machine knows when to not breath and when to breath for her.  She is responsive when asked to respond so this is all good.  Her chest xray earlier today was a dramatic improvement as the doctor said.
Today they also gave her red blood cells in the morning and platelets a little later which had dropped to 20,000 and are now 89,000.  All of her electrolytes are in order now too.  They had to adjust her sodium, calcium, and potassium.  Everything is adjusted and she is looking good.  They have been drawing blood every four hors every since she was admitted.  Of course we had a scare of an infection during the day but her temp that only went to 100 has come down to normal.  They gave antibiotics to be sure. 
So tonight she will have a breathing test somewhere between 3 and 5 am.  If she passes they will remove the tube tomorrow.  If she doesn’t they will do another test a later in the day.  It sounds like they are expecting her to pass and have the tube removed.  We will stay optimistic.  Home some time in a few days. 
It’s been emotional and very tough.  Everyone has been so supportive and this helps so much.

Life After Chemo

Life After Chemo
Life was good after chemo.  Kathryn returned to regular activities and the only way anyone would know that she was a brain tumor survivors would be to see her scare.  It’s about 6 inches long and there is a bald area on the back of her head.  She recovered remarkably.

All through elementary she did very well in school.  she played soccer for a few years and became a Brownie.  She had lots of friends.  She earned academic awards through out elementary too. The most outstanding math student over all in her 5th grade class.  She moved on to middle school and excelled.  High school started at Stadium in Tacoma and again she did outstanding.  She spend the last three years of high school at the Tacoma School of the Arts.  Here she learned to tone her artistic abilities.  Her designs and artwork are so beautiful.

During her school years she also spent a great deal of time focused on Cancer.  She was on a Relay for Life team since she was 9.  In high school she formed her own team and called it Cids Against Kancer Everywhere.  Each year she designed the t-shirts for the team.  She wrote numerous papers on cancer and her whole senior project was for cancer.  She designed about 6 different t-shirts that related to finding a cure and sold them around the time of Relay for Life.  All of the proceeds went to the American Cancer Society.  She also works for Unique Beverage sponsoring cancer related events.  As she went off to college she became a committee member for the Western Washington University Relay for Life.  She is also involved in The ACS’s Camp Goodtimes.  She and her brother started as campers back when Kathryn was 9.  They didn’t even want to go.  Now both of them give up 20 days each summer to volunteer at each of the two weeks of camp offered each summer.   This is where the name Panda comes from.  Every staff members gets a name that they use at Camp.
Now you have some history.  Kathryn set off to college in September of 2009 after earning a4.0 in high school and a couple of scholarships.  Her goal was to become a child life specialist in the oncology department.  She wanted to help kids with cancer.  Her first year of college was going just fine until April.  She called me with the news that her right hand wasn’t working correctly.  It would throws things and she would drop things.  Her writing became difficult.  I told her we needed to make an appointment for an MRI immediately.  So two days later (4/17/2010) we were in the  hospital.  We left and went shopping and then received the call.  I guess we already knew what they were going to say.  Yes, there was something.  The surgery was scheduled for Tuesday the 27th of April.  It took about 4 hours and to my surprise she was alert and smiling when I went to her room in the ICU.  I was not expecting her to even be awake.

Continued



After Kathryn’s remarkable recovery from surgery She went home on Friday.  That would be the fourth day including the day of surgery.  Whiel she recovered in the hospital friends came to visit and we would all party in the waiting room.  She also did homework to keep up on her classes.  Her altimate goal was to go back to college up in Bellingham.  During one of the visits by the nueosurgeon’s PA she said Kathryn would probably never drive again.  I told her she couldn’t tell Kathryn this.  So, we told her it was just standard procedure for all brain surgery patients to wait 6 weeks and see.  It is true.  We waited 6 weeks and when Kathryn asked the surgeon if she could drive he said, “Do you think you can drive?”  Of course she said yes and he gave her the green flag to go.  Well she headed back to school on Monday and I went with her (Mom).  I went to classes with her to take notes.  I attended her biology lab and wrote and drew wonderful pictures in her lab book for her.  She turned in home work to her psycology professor and he was amazed that she did this work right after brain surgery.  He said she know more than 90% of the class.  He was amazed.  Now Kathryn was trying to get caught up in all of her classes.  She talked to all of her professors and had arrangements all made.  I think she finally realized that going to college and getting radiation every day was not going to work.  She dropped two of three classes and took and extension on one.  Two of the classes she dropped she took on line over the summer.  So she only really fell behind by one class (biology).  During this spring Kathryn was also working on the Relay for Life at Western Washington University.  She was a committee member.  She was also supposed to be the lead into the luminaria by being the Speaker as a survivor.  She really had not shared her new situation with many people and she just broke down on the stage.  I spoke for her with her story as a survivor but also introduced her new situation with cancer. 
This cancer …  When you read about a glioblastoma you get pretty depressed.  There was no good news anywhere.  Scott (Dad) found a website that at least had some hope.  Everywhere else was doom and gloom.  I (Mom) cried daily.  Many times a day.  I searched for an answer and found some hope through a doctor at Duke.
Kathryn came home from Western in May after many trips from Lakewood to Bellingham.  She did 35 rounds of radiation and became tired but made it through.  The little old men and women she saw at radiation gave her strength.  She probably gave them strength too.  She enjoyed her summer from July 7th until August 16th free of treatments.  Then she started the Irrinotecan, Avastin and temodar.  When school started Richard (brother) would dirver her down to Tacoma every other week for treatment and then they would drive right back up.  I don’t know how she had the stamina to keep going to school but she did.  She just wanted to be “normal”.  She did a great job of it too.  The school year went well for her.  Some times treatments days were rough but she always pulled through.  She had a good summer and took another class to get completely caught up from the year before.  In September she started out on track with her credits.  She was determined not to fall behind and graduate in four years. 
On September 22nd she was down for an MRI.  She said she had started walking funny.  It was like she couldn’t walk straight.  The MRI showed something but they were unsure of what it was.  We had heard this before.  I knew and I’m sure Kathryn knew that the tumor had found it’s way back.  She went back to school and continued life the same tumor or no tumor.  On October 13th another MRI which was still inconclusive and then a spetrostomy on Monday the 17th which confirmed tumor growth.  We didn’t need the scan to tell us.  On the 19th Kathryn asked her doctor how long?  He confirmed what she really ment before answering.  She said, “How long do I have to live?”  She was given 3 to 6 months.  We were devistated.  How does anyone take that news without worry.  She had her stiff upper lip in place and was determined to stay strong.  This time she realized going to school was not an option because getting around was becoming unsafe.  She had stopped driving on her own.  It was like we were all sentenced to death.  She did take a big fall in the tub one day.  Shortly after this Scott placed the rail in the bathroom for her.  He cried as he cleaned it up and prepared to put it in place.  He said I should not be doing this for my daughter.  He is right.  The kids should be doing something like this for us down the road.  But it had to be done and has helped give Kathryn safety and independence. 
A friend called us and had us watch a movie about the Bruzynski clinic.  I had heard of it before and half heartedly looked into it.  This time it was our only hope.  Kathryn didn’t qualify for any trials and there were no other treatments for her condition.  So we flew to Houston (a whole new world).  We were treated great there and the treatment had good numbers behind it (better than we were given).  It was hope.  But Kathryn’s little body just wasn’t working correctly.  Everytime she would get started she would have to come off the treatment because of low platelet counts.  It was frustrating to us and her doctor in Houston.  We continued even on a very low dose.  Now we know the treatment didn’t cause the platelets to drop because they continue to drop even off treatment.  While in Houston Kathryn planned her Christmas party.  I don’t know how many of you noticed that she called it her send off party.  It is what you are thinking.  She also put together our Christmas card and letter.  These were important things for her to get done.  She made a couple of Luminarias for friends.  She didn’t get to finish list yet.  When we retuned home on the 3rd we had to plan for this party.  Some of Kathryn’s friends had taken down all the fall/Halloween decorations for us.  This was a huge help.  We had to unpack, put away the fall stuff, put up Christmas lights and decorations.  A tree had to be found and decorated..  Lots of things needed to be done.  Our friends and family helped up pull it all together.  We had one BIG party on December 10th.  Kathryn had a wonderful time!
Now we are here and this really stinks.  But once again we have had people support us so strongly and with such conviction that is makes us get all choked up every time we think about it.  A speghetti dinner raised over $4,200 for us.  This was down through Carol’s school and the FBLA club.  The track rats (Scott’s track buddies) have contributed money and have been so supportive.  One man Dennis helped us set up this blog.  He has been helping us all along the way.  We may be in a bad situation but the love we feel and the support we get form our family and friends is far beyond our imaginations.  Cancer is bad but with it comes good from so many people.
We continued with the treatment from the Burzynski clinic and continued to have problems with her platelet counts. At least here the clinic could do a transfusion quickly and we would only have to miss one infusion of the treatment.  Kathryn was on a very small amount of the treatment and only one part of the two parts.  They were trying to figure out what may be causing her platelets to drop.  Now that I think about it much later it was probably the tumor.  Things seemed to be going ok until the 23rd of December.  All of a sudden her sodium was 122 which is very low and dangerous.  The Burzynski clinic told us to get a transfusion right now.  We went to the clinic and they redid the labs thinking maybe we made a mistake in how we drew the blood.  We didn't.  It was hard to believe that her sodium would drop so drastic from 145 on Wednesday.  The thought was maybe just adding a lot of salt and restricting fluids would increase the sodium.  It didn't.  The next day our labs indicated that the sodium was now only 113 which now we know can cause a seizer.  We went to the emergency room and they could not believe the sodium level.  They ran the labs again.  At 113 Kathryn should not have been talking clearly and she was.  She should have been seizing and she wasn't.  When we were went to the ICU they started an IV drip of sodium at a very high level but it need to go in slow because raising the sodium level too quickly can also cause seizers.  They also did an MRI since we had one scheduled for the next week.  I found it interesting because her tumor had grown less from Nov 3rd to Dec 24th then it had from Oct 17th to Nov 3rd. It had grown 34% and the before it had grown over 50% in two weeks.  There was also a comment that there was treatment response.  Also some of the areas had completely cleared up.  The treatment was working even at such a small amount.  But now we are in the hospital and can't continue on the treatment.  In the morning of the 25th (Christmas Day) her sodium was still very low and at a dangerous level.  Still in the afternoon very low and at 7:30 pm just after sharing her turkey dinner with me while we sat in bed together she had a seizer.  She was sitting up and she clinched her little fist tight and her teeth were clinched and her little body was shaking hard.  I said she is having a seizer and yelled out "Molly".  She was Kathryn's nurse and she had just walked out of the room.  She was there in an instand. with several others.  As she calmed and it looked as though she was going to be just fine she went into a second seizer.  The room was filled with people instantly.  They gave her a shot and then she couldn't breath.  We were asked if we wanted them to incubate her and we all looked at each other and said yes of course.  She was out and they tried to put the breathing tube in.  It took three tries before they could get it in.  This probably caused some damaged to her throat.  A few days later they tried to take out the breathing tube.  Everyone was expecting Kathryn to do just fine.  We were all wrong.  When they took it out she immediately said in a whispering voice,"I can't breath."  Her face was turning purple and her nails were turning purple.  She could not breath.  All we could do is stay out of the way as the room filled with very capable people.  They bagged her and also put her out and again we were asked about life support.  Again we said yes.  This time they got the anetheseologist to do the tube.  He did it with ease.
Now the battle to get her home began.  Kathryn wanted to get home and we wanted nothing more than to get her home.  The trach was put in.  She would practice breathing without the machine and do well.  Finally she was allowed to breath on her own all night and she did just fine.  We did this for a few nights and then she was allowed to go home.  All she needed was oxygen not a machine to breath for her.  if she needed any kind of breathing machine it would have taking two to three more weeks to get her home.  We knew we didn't have time for that.  Thank goodness she could breath on her own so she could go home.  The rest is in the blog.

Tuesday, December 20, 2011

The journey's start 3/3/99

On March 3rd 1999 Kathryn had a CT Scan because she was having head aches that just didn't seem right.  On this day they found a tumor in her cerebellum.  We were lucky to find it so soon.  She hadn't complained much about her head aches but being they were in the middle of the night it seemed strange.  I just thought we would remove this tumor and life would be good again.  I was not ready for this to consume our lives.
Her tumor was removed on March 8th.  This was a Monday.  She dressed all in red just in case any blood got on her clothes. This would make it easier to get it out and if it didn't all come out it would blend in better.  She was terrified but never told anyone.  She only wrote it in her diary.  She was so strong and brave. On this day we heard for the first time that it was indeed cancer.  Our journey with cancer had begun..
On the third day I (her Mom) heard words I never wanted to hear.  I can't!  We were asked to get her up and she said, "I can't."  With encouragement she did get up only after she said, "It feels like I have a brick on the back of my head."  By Friday she was home and running around like a regular 8 year old.


After Brain surgery the following three weeks consisted of many appointments.  We had hair appointment to make a hairpeice from Kathyrn’s long beautiful hair.  We had neurosurgeon appointments to follow up on surgery.  We had oncologist appointment and radiaology appointments.  Kathryn had several MRI’s to see how surgery served her and to set her up for radiation.  She had tatoos put on her back for radiation and a mask made for her to where during radiation.  She had a port put in and it seemed that we were running to some kind of appointment every day.  

Then it all began (THE TREATMENT).  She started radiation along with vincristine every day, five days a week for 6 or 7 weeks.  The first few days weren’t so bad.  But then she ha a reaction to the chemo vincristine.   She threw up on Tuesday afternoon.  The throwing up didn’t stop.  I took her in to the oncologist and he said there was nothing wrong with her.  Ok , so we go home and she can’t eat because she just throws it up and she can’t sleep.  I take her in again and I get the same thing.  there is nothing wrong.  Well the is starting to get to me so I by pass the oncologist and go call the radiologist.  They tell me that it sounds like she is major dehydrated and I should bring her in and they will give her fluids by IV along with anti nausea meds to stop the vomiting.  This doesn’t work and by Friday we go in to see a specialist.  I see the chest Xray and I know immediately that there is something wrong.  It shouldn’t be all black.  Well, she was full of gas and in terrible pain.  No sleep now for days and no food or ability to poop or pee.  So we call the ER Friday night and tell them we are coming on Saturday morning so they would be ready.  The other oncologist was on call and he said that the vincristine will do this.  It paralizes the digestive system and makes it all stop.  So, there was something wrong.  I was so mad when her oncologist came in the next day that all I could do was send  the evil eye message to him.  I stood there and imagined taking is tie and choking him and his stupid statistics.  After five long days in the hospital, a couple of enamas and a constant Iv drip of morphine we finally went home.  During this stay Scott (Dad) bought Kathryn a puppy.  She named her Princess Violet.  Later she told us, “If you didn’t get me Princess I don’t think I would have ever come home.”  Wow, the power of the love of  a little puppy.  We did get Princess to help Kathryn see that she needed to be home to take care of her new little puppy.  Home we went

As the treatment progressed Kathryn lost all of her hair.  This was within just a few days.  She became very weak and lost weight.  She wasn’t big to begin with and when she lost 11 pounds she looked like a little skeleton.  She had the dark sunk in eyes too.  My cousin told me about megas. She said we use it all the time with adults in oncology to get them to eat.  This sounded much better than the doctor’s solution of more decatron that has numerous side effects one of which is terrible mood swings.  We already had experienced that just before and after surgery.  His other solution was to put her in the hospital and stuff a feeding tube down her throat.  That wasn’t appealing either.  We promised to keep her out of the hospital as much as we could.  We don’t break our promises.  So the megas worked beautifully.  The doctor said they had never used it before on children and I told him that he could be the first.  After Kathryn used it wth great success they started using it more.  We played the weight game.  When you hit a certain weight 40 pounds you can stop taking it but when you drop below 40 you have to start taking it again.

By the end of May Kathryn wanted to go to school.  we went in for show and tell and she would spend a few hours here and there at school.  She hated being out of school.  She actually went back the last couple of weeks full time. 

After radiation they give you a few weeks to recover and then the routine drugs start.  Her protocal was Vincristine once a week and CCNU and cysplatin every 6 weeks.  the cysplatin is very toxic and is given over several hours as an IV drip.  Then they give a saline flush over another 8 hours or so.  I (Mom) was trained how to  stop the pump and take out the IV needle from her port so we could do the flush at home.   We didn’t do the last dose or two of the cysplatin.  It was effecting her hearing and I had a long talk with the hearing specialist about how Kahtyrn’s life might be if this hearing loss were to continue on the same path.  It wasn’t good. Hearing aids, sitting in the front of the room and the teacher required to speak through a special device.  I also consulted three other doctors.   Two of these doctors were from Seattle and one from California.  We had been giving Kathryn natuaral supllements since July and they seemed to work.  All three doctors said to drop this drug and two of them said to drop all of the drugs.  We only dropped the cysplatin.  Her doctor was not happy.  I do not and will never regret this decision.  We gave Kathryn a quality life!   

During the 48 weeks of this drug protocal Kathryn was a real trooper.  She didn’t feel well all the time but she didn’t want to miss out on life.  While we were camping that summer on Hoods Canal she sat there on the beach with her bald little head.  Another child walked by and stared.  Kathryn turned to me and said, “It’s ok if she stares at me because she just doesn’t understand shy I am bald and she is trying to figure it out.”  I’m still blown away that my 8 year old had that kind of insite. 

School started back up and Kathryn only missed about 3 or four days for those long IV drip days of cysplatin.  One day the clinic called and said Kathryn’s counts were too low for her to be in school.  Well she was already there.  I called my Dad to go pick her up and told him to wait until lunch time.  I also warned him that she would be upset so go prepared.  Dad must have explained it just right because she went without too much of a fight.

Long showers were also something that became a coming theme to feeling better.  Kahtyrn would stay in the shower for an hour sometimes.  Her brother would do things to comfort her too.  He brought home the mice from school and would have Kathryn hold them when she didn’t feel well and this would be a great distracter.  Lots of snuggling too.

The big day finally came.  May 5th 2000.  This was Kathryn’s last day of chemo.