Eye Muscle Surgery

For the past year we have been going to an eye specialist for Catherine.  This doctor specializes in eye muscle surgery.  He does extremely thorough exams of Catherine, tried glasses, tried patching her eyes for awhile, tried medicating her eyes for awhile, and ended up actually operating on her eyes on August 14, 2013 to align her eyes.

We visit this doctor every 4-6 weeks.  Catherine, as usual, brings a favorite stuffed animal with her.  She has to cover her eye with white tape so the doctor can test her other eye's vision.  Catherine requested that her puppy have tape over an eye also:

She also wears these funky glasses to check her depth perception:

On the day of her surgery, she colored while we waited:

We wrote her favorite Scripture on her arm before the operation:

Playing with the hospital clowns before her eye muscle surgery:

I don't think we took any pictures of her eyes after the surgery.  For several weeks after the surgery, her right eye was a bloody gunky mess.  Each morning it would be sealed shut with all the discharge.  We had to carefully clean all the discharge out without damaging her healing muscles. 

Now, it has been almost two months since the surgery.  Her eyes are looking much better now and are aligned.  There is a 30% chance that her eyes will deviate from each other again and the surgery will have to be redone.  But, so far so good.

Sub-aortic Membrane

I have learned so much anatomy from parenting Catherine!!  As an infant, she had heart surgery to correct a hole in her heart.  The surgeons installed a tornado coil and we have had no problems since then.  But, for the past five years we have been monitoring her subaortic membrane.  Apparently Catherine has an extra membrane in her heart, where none should exist.

Right now the membrane is thin enough that most of the blood passes through it with no problem.  But, it is getting thicker each year and we have had three cardiologists tell us that we will have to have it removed in the next year or two. 

We take her to the cardiologist every three months to have her heart examined.  Being still a child, she finds this to be play time.  She gives her stuffed animal a cardiac ultrasound:

During a break she and Sabrina played leap frog:

And she attached a heart monitor to her stuffed animal to match her own:

The mere idea of this surgery terrifies me.  In order to cut the membrane out, the surgeons must crack open her chest, re-route all of her blood through a bypass machine, put ice on her heart to stop it from beating, cut her heart open, remove the membrane, sew her heart closed, warm the heart up, and close her chest.  I am slightly comforted by the fact that heart surgeries are somewhat common in children and Egleston has a great cardiac center. 

But, it has taken a few months for me to be able to talk about this surgery without crying.  I pray that the membrane never thicken and she never needs this surgery.  But, every single time we have gone to the cardiologist it has become thicker.  Three separate doctors (well, they actually all work in the same practice so they are not independent of each other) have told us the surgery will someday be needed.

All three of those doctors have also told us that the larger she gets (even if just a few pounds) the safer the surgery will be.  So, we will continue to get her tested every three months.  And, I am certain that her stuffed animal will continue to be tested as well.

Starting Chemo

Catherine's cancer diagnosis and treatment is getting so far in our rear view mirror that I often forget just how little she was when we started.  Here's a picture with her oncologist at one of her first appointments:

 She was so little!!

I Don't Want to be an Owl!

Because of Catherine's brain tumor being on her optic nerves, we have always been worried about her losing her vision.  We know several people who have had this brain tumor who have lost their vision, or much of it.  Many of their moms have told me that the kids lost their vision from "the outside in," which means that they lost their peripheral vision first.

We take Catherine to a pediatric opthamologist and a neuro-opthamologist several times per year to have her vision tested.  So far all the doctors have said is that she has lost some peripheral vision.  But, her brain tumor shrunk to almost nothing (there is just a little "remnant) with the chemo and there has been no re-growth since March 2009.  So, we have felt fairly confident that her vision was fine.  Maybe not perfect, but fine.

A few months ago we read a book about owls and learned that they cannot turn their eyes in their sockets, so they have to turn their heads more than other animals.  We practiced how owls have to turn their entire head to look at things to the side.

So last week, while I was getting the girls in the car, Catherine started to cry and said "I don't want to be an owl!"  I had no idea what she was talking about and asked her to explain.

She said she wanted to be able to look to the side without turning her head.  She said that she didn't want to be an owl and have to turn her head all the time.  I asked if she had more trouble seeing things to the side than usual, but she really couldn't answer. I asked her if things were blurry, and she said no.

Of course I have worried about her statement.  I try not to worry, but how can I avoid it?  Her next regularly scheduled brain MRI is set for September 8.  Other than her statement, there have been no other signs of possible vision loss. 

Praying not to worry and claiming her statement was just a silly comment by a young child!

The Antibiotic Dance

Catherine has fought urinary tract infections her entire life, even before we realized she was suffering from them.  The only signs we get are quickly spiked fevers and severe lethargy.  In January she got a serious UTI the week after her major bladder surgery.  She was hospitalized for a week and was in pretty bad shape for the several days.  It was quite scary.

Last week, on Robby's birthday, she suffered another UTI.  She was fine all morning, active and playing. At lunch she seemed a little sleepy.  By 1:30 p.m. she was unable to hold her head up and was burning hot. We were at a Preschool Music Class at Camp Sunshine. 

I took her to the emergency room, where she had a 102.1 fever.  Fortunately, her fever responded quickly to medicine and they gave her a broad spectrum antibiotic through an IV.  They took a urine culture and we met with the on-call urologist.  He told us that every person who is catheterized regularly will always have bacteria in their bladder and urine.  These are called "colonized bacteria" and are fine, until such time as her body cannot fight them. 

When the bacteria grow too strong, she will exhibit other signs of an infection, like a fever or lethargy.  He said that no matter how clean we are, every single person who is regularly catheterized has bacteria at all times and continuously battles UTI's.

A few days later we met with our regular urologist, who decided that she had become resistant to too many bacteria and referred us to an infectious disease specialist. It used to scare me when a specialist refers us to another specialist.  I always took that as a sign that the situation was pretty serious.  But now I am grateful when a doctor basically admits that the situation is beyond his/her scope of knowledge and ability and wants to Catherine to get more specialized care.  It wasn't much of a surprise either, because we were well aware of the fact that Catherine's little body could not fight all these infections on its own.  We knew that we needed a better solution, a more preventive solution.  So, we met with an "infectious disease specialist" today.

The infectious disease specialist is starting us on a rotation of prophylactic antibiotics.  We will alternate between two different ones, using one for seven days, then switching.  If this works, that is all we will do.

If she continues to get UTI's with the rotational system, then we will do daily bladder cleanses.  This is a more targeted, stronger solution.  Apparently we would make a mixture of water and a powdered antibiotic.  Then we would empty her bladder of urine and inject this solution into her bladder.  We would wait ten minutes and then withdraw the solution back out, which would mean we are sucking out all the bacteria with the solution. 

I asked why we didn't just switch to the strongest solution first.  The doctor said that her body contains bacteria which is trying to grow.  It will mutate inside her body as it needs to in order to survive.  If it has a minor antibiotic to fight against, it will mutate a little.  If it has a major antibiotic to fight against, it will mutate a lot.  Then, when it finally "wins" and infects her whole body, it will be much more difficult to treat.

We have never rotated antibiotics with her, so I am hopeful that this will work.  I am also grateful to know that there are other solutions available should we need them.  We have also invested (and I mean invested!) in some bottles of surgical prep soap.  We have to reuse her overnight catheters because our insurance will not give us thirty a month.  We are trying to get more, but until then we have to wash them and reuse them. 

We have tons of regular catheters, so we do not have to reuse them.  Robby found a Facebook page for "medical supply exchange."  He was able to get hundreds of regular catheters for just the cost of shipping (sadly it was from a family whose child had passed - insurance companies will not let you return items, so they had tons of extras).  We are looking for ways to obtain more of the overnight, balloon catheters.  Our urologist assures us that it is OK to reuse them, but in my dream worls we would not have to.

Bladder Surgery

Here are some pictures from April 19, 2012 - when Catherine had her most recent bladder surgery.  She was feeling great going in to it:

She is allowed to bring one doll or stuffed animal with her every time we go to the hospital.  This time she brought Baby Sleeping Beauty.

I didn't realize that Robby was taking pictures as they were wheeling her down the hall into the operating room.  That is always a scary time for me, but Catherine was busy trying to get Baby Speeling Beauty's tiara to stay on her head.

We had Sabrina with us all day while Catherine was in surgery and recovery.  She played with make-up while we waited.

 When they bring Catherine back, she always looks like this:

Totally asleep, wrapped in blankets, a bunch of monitors hooked up to her, with an IV attached to her.  She also had a new urine bag after this surgery.  It takes an hour or so for her to wake up, and then she is basically half asleep.  Even so, I am always thrilled to get her back!

What's the Difference?

In the last few weeks everyone who sees Catherine says she looks so great and seems to have tons of energy.  They are right.  She has so much energy now it is thrillng to us, she is smiling more, bouncing around, and seems to be bubbling over with energy. 

At times, it is a problem because she doesn't have the self control to deal with all of her energy; we have to teach her self control.  Plus, she still doesn't have the best balance and falls quite a bit as she runs (literally, runs) around the house.  More falls means more minor injuries.

We have wondered what the difference is between two months ago and now.  Several changes were made at one time, so it is hard to say what the difference is, but here are some factors:

-  The January surgery allows us to do colon irrigations, which is keeping Catherine from being constipated.  Although we are not getting enough out with the catheterizations, we are actually emptying her bladder completely when we do.  Her abdomen is much flatter now and she looks totally different.  She is likely not getting as many infections as she was because her body is more effectively eliminating waste.  She rarely throws up now.
-  With home schooling, we can let Catherine sleep until 8 or 8:30, rather than having to wake her up at 6:45 a.m.  We still put her to bed at the same time each night, so that gives her an extra hour to almost two hours of sleep every night.
-   We have moved all of her feedings to the day time to prevent us from having to wake her up all night to catheterize her every 2-3 hours.  Therefore, she is getting calories all day rather than fasting all day.  These calories are likely giving her energy.
-    She may be sleeping better at night because she is not getting fed.  I wonder if the influx of all of her calories overnight made her body work digesting it, thus disrupting the restfulness she was getting.
-    We are doing her schooling in shorter bursts of two to three hours at a time.  This is because both she and I get exhausted after a few hours of intense work.  We both need a break.  So, we school for 2-3 hours, then play for 2-3 hours, then school again, then play again.  Finally, at night when we do her colon irrigations, we do another hour of school work.  These shorter bursts of educational time have been very effective because we are both fresher.  Plus, I think she is not as exhausted as when she had to attend school for a full 7 hour day.  I don't think she had the endurance to go all day.
-   She gets to play with her sister a lot now.  And I mean really play, not just for a few minutes between dinner and bedtime.  They act out scenes from movies that have seen, stage weddings in the playhouse, do treasure hunts in the backyard, teach school to all the Barbie dolls, host tea parties, etc.  This is not rushed time; they can seriously play together a lot more than ever before.
-  She gets a lot more physical affection and cuddling time from me.  I am not sure if this has physical health benefits, but it is clearly a need which Catherine has.  All day long Catherine asks for hugs and kisses.  She requests that I sit with her on the couch while she journals.  I thought this may stop after her surgery was over and we were home for a few days, but it has not abated.  I think she may outgrow it over the next few months or a year, but for now she seems to have a significant need for physical affection.  Fortunately, I can meet that need of hers for now.

Whatever the reason is, or more likely reasons, it is so exciting to see her now - a bubbly, happy child. 

Three Year Celebration

Catherine ended her treatment on March 17, 2009.  "Treatment" is a word that never meant much to me until I entered the world of pediatric cancer.  I am not sure if adult cancer patients use the term "treatment" or not.  With my mother's cancer, we never called it "treatment."  She had lung cancer, was in her early 60's, and had a body weakened by years of smoking and untreated diabetes.  We all sort of knew that she was not likely to survive her cancer.  We spoke about what "they" (meaning the doctors) would do for her, but that was it.

In the world of pediatric cancer, parents talk non-stop with each other about "treatment."  Does it include surgery, chemo, radiation, bone marrow transplant, stem cell transplant, neupogen injections, etc.?  How long will the "treatment" be?  Are you "on treatment" or "off treatment?"  When did you end "treatment?"

Camp Sunshine offers "Off Treatment Workshops" for families to adjust to their new lives.  I recall when Catherine ended her treatment, I all of a sudden had lots of extra time on my hands.  The last few months of her chemo were rough on her little body, requiring several whole blood transfusions and platelet transfusions.  Each of those takes an entire day in the hospital.  Plus, we were constantly watching her blood counts.  So, she had to go to the clinic to have her blood counts taken.  Each of those visits took half a day.  Every Monday we had her chemo infusion.  Usually on Tuesday or Wednesday she spiked a fever and we ended up in the ER to get intravenous antibiotics to protect her central line. 

So, when we came off of "treatment," I remember looking at my calendar and realizing I did not have a single doctor's appointment for a month!  Compared to the 3 to 4 days a week, this was a huge change for us.  The chemo clinic had become home to us.  Spending so much time there, we became very close to some of the staff and nurses.   

With brain tumor patients, the percentage who relapse is so high that the doctors leave the chemo port in for six months.  It had to be flushed monthly, but leaving it in would prevent the need for an extra surgery if she did relapse.  Thankfully, Catherine's tumor did not return, so we had her port removed six months after she ended "treatment."

Now we return to the hospital every three months for an MRI, followed by "Brain Tumor Clinic" a few weeks later.  At "Brain Tumor Clinic" we meet with several doctors, who all review Catherine's case and make a group decision about her medical situation.  In time, we should go to Clinic every six months, and then eventually annually. 

In the three years since we stopped "treatment," Catherine has not relapsed.  Her tumor was discovered on November 8, 2007.  She had surgery to put a port in and chemo began on December 4, 2007.  I don't want to celebrate or recall those dates!

During "treatment" Catherine had brain MRI's every three months.  When Catherine's tumor was discovered, it was 1.3 cm, but her vision was fine (as much as we could tell with a 27 month old child trying to read an eye chart).  We were told that as long as the chemo stopped the growth of the tumor, it would be considered a success.  The oncologist said that sometimes chemo kills tumors, but the tumor just remains dormant in the body.  Catherine's tumor was in the center of her brain and was not a solid tumor, so it was inoperable.

Catherine's first brain MRI during treatment showed no changes.  So, the 1.3 cm tumor was still present.  Her second brain MRI, six months after treatment began, revealed fantastic news: the tumor was gone!  I remember asking the doctor if we could stop chemo because the tumor was gone.  She said we couldn't because there was likely some more chemo cells in her brain, but just so few that it did not show up on an MRI.  So, we had to finish the protocol of 18 months of chemo.

Every MRI since that one has shown no regrowth of her tumor, both while we were still on treatment and since we have been off treatment.  Praise God!  So, I think it is fair to say she is in "remission."  That is a reason to celebrate!

In picking a day to celebrate her remission, we chose the last day of her chemo, which was March 17, 2009.  I honestly did not realize it was St. Patrick's Day until two years later.  The first year, we went to Catherine's favorite Japanese restaurant, where she can enjoy a fire-laden show while the rest of us eat our meal.  Last year we had a party at our house with the small group of friends who prayed with us during her treatment.  This year, we decided to go downtown to a restaurant we had never tried: the Sun Dial.  It is on top of the Westin Peachtree Hotel and rotates. 

The girls still like to dress like twins quite frequently.

The 72 floor glass elevator ride freaked me out, but the girls squealed with delight.  We were really high up:

The girls loved wandering around the restaurant, pointing out things they saw.  Neither had any fear of heights and both were willing to stand right up against the windows:

 The Georgia Aquarium:

 Turner Stadium:

After dinner, the sun had set so we were able to see the city lights:

We all had a blast at the Sun Dial restaurant.  It is very expensive and not the best food I have ever eaten.  I know of several restaurants which have better dining.  But, the views are amazing and the girls loved the rotation of the restaurant.  They kept saying "it is like a merry-go-round" and loved hopping on and off the rotating portion of the restaurant.
So, we are so blessed to be able to celebrate three years of remission!

January 18, 2012

I have been so overwhelmed the last few weeks with dealing with Catherine's medical journey and trying to figure out how to catheterize her, as well as trying to get as much home schooling done while I can, as well as representing my clients in court as needed, that I have been quite absentminded lately.

Tonight I had some time to upload pictures off two separate cameras and found some pictures I completely forgot we had taken.  Yet, I am so glad we took these pictures.  It is such a gift to find a picture that records a moment in time!  Here is Catherine right before her bladder/colon surgery:

This picture is special for me because it is taken in the holding area right before Catherine is taken into the operating room.  We have been through a lot of surgeries with Catherine, but I still have that little twinge of fear that she may die during the surgery.  We have had a few operations that did not go as planned, so that fear is ever present.  But, I don't want Catherine to be afraid, so I have to act like I am not afraid.  We just tell her she is taking a "special nap."

Another special aspect of this moment is that Robby is there.  Catherine's bladder/colon surgery was scheduled for 1 p.m.  Our plan was for Robby to work in the morning and drive over during the lunch hour.  But, the operating room and surgeons were available early so the hospital told us at 10:30 that they would start at 11.  I called Robby, who hopped in his car at the Smyrna Home Depot Headquarters and drove to Egleston.  He walked in about three minutes before they actually took her back.  Yeah!! 

We were able to say a quick prayer with her and take a picture with her doll of the day, Princess Belle.  Then, they rolled her away on the gurney and we went to the waiting room for the next five hours.

Here is a picture of her abdomen two weeks later, when we were at the surgeon's office to remove the tubes.  The upper tube is the Mitrofanoff, which goes through her belly button into her bladder.  The lower tube is the MACE, which goes into her colon.

These two holes look like open wounds, because they are actually the ends of her appendix.  It is living tissue, so it looks like an active, sometimes bloody, site.  We were very concerned about it, but the surgeon says that is exactly what it is supposed to look like.  Now these tubes are gone (they were temporarily sewed in) and we insert new tubes every time we need to use them. 

Her abdomen still looks quite distended in this picture.  Since then, she has passed a lot of fecal matter and her colon blockage has loosened.  So, her abdomen is a lot flatter.

We are still having a lot of trouble learning how to use these tubes, especially the Mitrofanoff.  But, we are learning and it has only been a week that we have been doing this on our own.

"My Sissy Needs Help!"

We have tried to shield our children from fear, disappointment, shock and all the other negative emotions associated with having a medically fragile child.  Usually, we are successful.  We have always tried to treat it as "normal" and "OK."  As a result, both girls think it is just fine to get your milk through a tube.  Sabrina will frequently try to hook Catherine's feeding tube into her belly button.

They have both given their stuffed animals pretend IV's and will frequently be seen using masking tape to check a Barbie doll's blood pressure.  This is their reality and so it is part of their pretend play.

However, this last surgery has been different because both girls have a heightened awareness and understanding of what is happening.  Sabrina helped me pack all of her stuff to go spend a week at Grandpa's.  She understood that Catherine would be in the hospital for surgery, although I am not sure if she understood what the surgery was for.  Catherine was (and is) well aware of what the surgery was for (she says she will get a te-te tube and a poo-poo tube).

When Catherine came back from the hospital, we had to give her colon irrigations once a day.  She also has a catheter bag for now.  She currently has two tubes coming out of her abdomen, in addition to her G-tube.  The openings are new, so they are still healing.  They are bloody and have mucus coming out of them.  Her te-te tube looks like there is hamburger meat coming out of it.  (Hopefully this will improve with time!)

On last Saturday evening we did the first colon irrigation.  Robby and I had never done it before, so we were nervous about how to do it.  Catherine sits on the potty while we push 8 ounces of saline into her colon through a new tube.  She has to hold her shirt up high so we can see what is happening.  While we were pushing it, we kept asking Catherine if it hurt, if she could feel it going in, etc. 

Sabrina walked into the bathroom, because we were all in there.  She saw the new tubes, with the yucky bloody openings, for the first time.  We probably had uneasy, scared looks on our faces. 

I turned to look at Sabrina.  Her mouth was gaping, her eyes were wide open, and she was staring straight at her sister's tummy.  She was totally silent.  For the first time ever I saw fear in her face.  She had no idea what was happening and had such a look of worry.  We had to comfort her and show her the new tubes.

After that first colon irrigation, we are much more comfortable doing it.  She has to sit on the potty for 20-30 minutes.  We give her the laptop on a desk so she can watch a DVD or play some computer games.  Sabrina sits on a stool next to her and also plays on my laptop.

On Monday evening, I was in the office at my desk while they were in the bathroom.  Sabrina came running down the hall, full speed, screaming "My sissy needs help!"  She has never done that before.  So, I ran down the hall to he bathroom.  Catherine threw up a little, probably because she was straining during her colon irrigation.  She was fine, but it was unusual.

Again, I hated that Sabrina was afraid for her sister.  I was proud of her that she ran to me to get help when she thought her sister needed help.  That was a mature reaction and I praised her for it.  But again, I was so sad that Sabrina had experienced fear.

On Tuesday Catherine spiked a fever and was so sickly that I decided to take her to the ER.  Robby was still at work.  I called a neighbor to watch Sabrina, but she did not answer.  So, on the way out of the neighborhood, I stopped at a neighbor's house.  I knocked on the door and begged her to watch Sabrina for what I thought would be 2-3 hours.  Sabrina had never stayed at their house and really did not know their kids well.  We had seen them at the pool during the summer, but this was essentially dropping Sabrina off at a stranger's house (to her, I knew the mother pretty well).  My neighbor said OK, so I got Sabrina out of the car.  I told her she would stay here for a few hours while I went to the hospital with Catherine.  She asked why and I told her we just needed to go.

Sabrina is quite compliant and easy-going, so she just walked into my neighbor's house.  I wonder what she was thinking.  Was she worried about her big sister?  Did she understand that this was serious?  Did she think I was just dumping her off at some one's house?  Did she think she was less important than her sister?

Things have settled down since we returned from the hospital after this second stay, so we are trying to act like everything is normal. I am also trying to give Sabrina lots of attention so she feels loved.  It is so hard to balance all of this and it is is frequent prayer of mine that Robby and I balance everything (these are not listed in any particular order):

Catherine's medical needs
Catherine's non-medical needs
Sabrina's needs
daily maintenance of self, house, etc.
rest
couple time
personal time
service to others efforts
social time with friends, family

Back in the Hospital

We have had a busy week!  Catherine was admitted to Egleston Hospital on Jan. 17.  This hospital is right next door to Emory University, so parking is always a big problem.  I drove around for an hour before I decided to just go to valet (which is $8 a day instead of $1 a day).  Then we rushed ourselves and all of our belongings to the registration desk. We were told to be there by 11:30 a.m.  I had not planned to spend an hour circling the parking decks, so we were a little late.

So, we registered.  About 3 hours later they finally found a room for us, even though this admission was planned several weeks ago. We got settled in our room, and Catherine promptly found the play room.  She got the "Fred Flintstone" car and started driving all over the floor with it.  She was feeling fine.

About 4 p.m. we started the "bowel prep."  Through a pump, they gave her ten ounces of a special fluid every hour from 4 p.m. until 2 a.m.  Ironically, this fluid is called "GoLitely."  It is anything but go lightly.  I would call it go tsunami.  Once it kicked in, about 6 p.m., she had enormous bowel accidents which were completely liquid.  The nurses and I had to change the bedding several times, mop the floor, and sponge bath her all night long.  It was yucky, but apparently necessary for this surgery.

So on January 18, we wheeled her down to the operating room.  She was still very energetic and talkative.  The surgeon came to speak with us.  When he asked her if she knew what she was getting she said "a tee-tee tube and a poo-poo tube."  He smiled because she so concisely and accurately described the procedures.

Her surgery was from about 11 a.m. until 3:30 p.m.  The surgeon came and talked with us in the middle of the surgery, telling us it was going well.  They brought her back to us about 4 p.m.  She slept the rest of the day.

She was sleepy most of Thursday and Friday, with a few complaints of pain.  On Thursday they gave her morphine for pain twice.  She reacted with what we called a "morphine stare," where she would sit up in bed and stare directly at you.  She wouldn't even blink if you waved your hand in front of her face.  She looked like she had had a lobotomy.  We hated that reaction and asked the doctors to see if she can do without the morphine.  They switched us to Tylenol, which seems less intense.

She seemed very uncomfortable, but not in pain.  There were no signs of problems, so they sent us home on Friday evening.  Of course it was awesome to be home.  I had spent 23 hours a day in that hospital room and was ready to go stir crazy.  I also got to hold and cuddle Sabrina for the first time in days.

At home Catherine was lethargic and very uncomfortable.  She did not want us to lift or carry her.  She kept trying to walk on her own, although she has to carry a catheter bag with her and she is very unsteady.  She played some, but slept a lot too. 

On Monday night we gave her a sponge bath on the kitchen counter.  I think she felt better after this.  She seemed to enjoy it, saying "it is raining on me!"

On Tuesday afternoon we sat on the couch and read a book together.  She was exhausted and all of a sudden (which is always how it happens with her) she spiked a fever.  Her skin was hot to the touch.  I used the temporal thermometer we have and got a range of readings: from 99.7 up to 101.5.  So I gave her some acetaminophin.

An hour later she was still hot to the touch and had a range of temperatures in the 100's.  She normally responds very well to acetaminophin.  I was concerned and told Robby I was going to take her to the ER.  On the way out of our neighborhood, I stopped at a neighbor's house and, with no notice, left Sabrina with them.  I honestly thought I would be back in 2, maybe 3, hours.

At the ER she no longer had a fever, but was very lethargic.  Because she had just had surgery, they took a urine culture, did a CBC, and did a c-reactive protein test (of her blood).  Apparently the third test will tell them if she is fighting an infection even if she is on antibiotics.  The urine culture had blood and proteins in it.  We do not have the final results on it yet.  The CBC showed elevated white blood cells.  The C-reactive test was very high (normal is 2 and she was over 25).

So, we started IV antibiotics and they admitted us.  She continues to spike fevers every few hours and is miserable.  When she has a fever spikes, she either moans in pain or has a blank stare on her face and looks like a statue.  When the ibuprofen kicks in, she'll feel a little better for awhile, then she'll feel bad again.  This morning we took abdomenal x-rays.  We have had three visits from the surgeon since we have been here. 

I think we will be here until at least Friday.  Grandpa came down on Tuesday night to take Sabrina back to Jasper with him for a few days.

Two More "Tubies"

We have been trying to potty train Catherine for almost three years. We were told not to start until after chemo ended (in March 2009) and after her bladder was repaired (for the first time in April 2009, then again in November 2010).  We had no success potty training Catherine.  We were hoping peer pressure may help.  In kindergarten we eased up on the potty training and let her wear pull-ups to school, but over the summer we tried to ban pull-ups.  We cleaned the floor several times a day.

But in first grade we believed that we really needed to get her potty trained.  If not in first grade, then we'll have a second grader in pull-ups, then a third grader, etc.  She had been off chemo over two years.  We had the confidence that we could do it because I potty trained Sabrina in just three days (using a "boot camp" strategy a friend told me about). 

Catherine's school agreed with us and assigned a full-time para-pro to her to help her.  The para-pro kept meticulous records and timed every single trip to the bathroom.  She took her hourly.  Catherine almost never initiated, but usually would go if you sat her on the potty.  But, she still had accidents almost every day.  The school, county staff, and I had several meetings about this process.

By late September, six weeks into school, Catherine was still not the least bit potty trained.  At our quarterly Brain Tumor Clinic meeting, the oncologist told me that there must me something anatomically wrong with Catherine's bladder.  She said every child gets potty trained in a few weeks, even ones who are severely cognitively impaired.  So, we scheduled a meeting with the urologist.  He agreed there is likely something not working correctly, but needed to do some specific testing in the hospital to determine what exactly was happening inside of her.

On December 7th we went to Scottish Rite for the tests.  They revealed that her bladder does not contract when she tells it to, the neck of her urethra has too low leak pressure (should be in the 80’s and is in the 10’s) and her colon also doesn’t do what her body tells her to.  Catherine's big spinal tumor at birth (called a saccrococygeal terratoma) and her tethered spinal cord likely caused this.  The urologist said that he does not think she will ever be potty trained.  He said she has a neurogenic bladder and colon (which means the nerves serving those organs do not work).

One solution is to catheterize her 4-6 times a day through her urethra.  However, this would not fix the colon problem and, due to the low leak pressure, she would still leak.  Plus, there is a dignity issue.  Catherine is starting to develop modesty and we don't really want Mommy, Daddy, Grandpa, school nurses, and babysitters catheterizing her this way.  By age 8 the doctor said that she can catheterize herself, but that is still a year away.

There is also a surgery which can use electrical impulses to reconnect her nerves with the bladder and her colon, but she is not a candidate for that surgery because her lower spine has so many issues.

Another solution, and the one we have chosen, is called a Mitrofanoff procedure.  The surgeon will use her appendix to create a second urethra.  Your urethra (I have learned so much anatomy from parenting Catherine!) is the tube that drains urine from your bladder out of your body.  This second urethra will be at the top of her bladder and will exit her body at the bottom part of her belly button.  Then, several times a day we will stick a tube down this "second urethra" and hold the other end of the tube over the toilet.  She will urinate in this manner for the rest of her life (unless medical science invents something better).

To help with the leaking, they will take either cadaveric tissue (from a dead person) or tissue from a cow and wrap it around the neck of her urethra, where it joins the bladder.  This is called a sling and should prevent leaking. The surgeon asked us during our meeting if we had a preference of what type of tissue they used. 

Thankfully the nurses had taken Catherine out of the room and were playing with her.  Robby and I were still reeling with the onslaught of bad news and information.  Then the surgeon asked if we wanted cadaveric or bovine tissue in our daughter.  I wanted to say "neither, can't she just be healthy?!"  But, I learned long ago that Catherine's body is not "healthy" and that is just the way it is.  On the spot the only response I could come up with was "whatever is likely to not be rejected by her body and last the longest."  Robby said he didn't care either way, that she already has a metal coil in her heart and a plastic tube in her stomach. 

Lastly, Catherine has been constipated her entire life. We give her stool softeners, medicine to make her colon contract, etc.  She has had several impactions (where it is just stuck in there).  One of them was removed surgically.  Usually we can handle the impactions at home with enemas and lots of laxatives.  It is a horrible situation, very painful for her.  Sometimes she gets diarrhea for days, and so we have to worry about dehydration.  Needless to say, these bowel issues are very hard on a child who would prefer to play.

Last year some of the bacteria from her colon penetrated the membranes of her colon and gave her a horrible e coli infection.  I have literally never seen her so sick before.  We carried her to the ER and she couldn't even hold her head up.  They treated it with massive, strong anti-biotics.  Within a few days, she was fine.  But, the fear that she will get e coli poisoning again is ever present.

So, the third thing the surgeon is going to do is use another portion of her appendix in a procedure called MACE.  This will create a hole in her tummy (called a stoma) which will be on the right side (opposite of her g-tube).  This hole will go into the top of her colon. We will then, once a day, sit her on the potty and put a saline mixture into the stoma.  This will irrigate her colon.  It is like an enema, but from above instead of below.  Therefore, it will be less painful (hopefully no pain), more dignified, and something she can learn to do on her own.   

She will be in the hospital for a week having all of this done.  The surgery date is set for January 18, but we have to go in the day before for "bowel preparation."  Then she will have 3 weeks of recovery after that. 

We have explained to Catherine that she will get 2 more "tubies" in her tummy.  She asked me how long they will be there.  I told her "a long time."  Last night when we were doing an enema for her, she pointed to the right side of her abdomen and calmly said "after the surgery you will do the enema here, right?"  It is amazing how much she understands.  It is amazing how much she can accept and minimize.  It is just not a "big deal" to her.

The surgeon asked us if we were OK with all that he thought needed to be done to Catherine.  I told him that I hate the fact that these problems will plague her for the rest of her life, but it is not like we have not significantly intervened medically with Catherine many times already.  It seems like every aspect of her body has had some type of surgery or treatment.

The words normal and healthy are so strange. Every person who is expecting a baby prays fervently "I just want a normal, healthy baby." That was my prayer when I was pregnant. But, that is certainly not what God gave us.

But if I had prayed for "a sweet, loving child with the inner strength to accept any and all challenges she faces with dignity and perseverance" then I would have gotten exactly what I had prayed for!  Catherine understands why she is getting these new tubies, has not questioned it at all, and seems to understand that it will be better for her. 

Other than a few comments, I don't think Catherine has thought about these two new tubies much at all.  She is far more concerned with what Santa will bring her for Christmas, whether she can wear a ballet costume to the Polar Express ballet we are attending, and if her sister is sharing her princess dolls.  Those issues elicit real emotion and concern from Catherine, not the failure of her bladder, urethra and colon to work properly.  If only I can learn from Catherine's example ...

Scalp Surgery

Last week Catherine had three spots of dead skin removed from her scalp.  She was born with these three tear-drop shaped patches of dead skin on the crown of her head.  When she was a baby, a dermatologist told us it should be removed as it could contain pre-cancerous cells.  But, he wanted to wait until she was older.  Then when she was 27 months old, she started battling a brain tumor.  The oncologist said we should wait until she is off treatment to repair the scalp.

Of course post cancer treatment we have been focused on bladder, kidney, colon, and stomach issues.  Some of those issues are still in process, but things have medically kind of settled down for awhile.

So, last week we had the three patches, as well as a "bridge" of skin between them removed.  The surgery was supposed to take 30 minutes, but instead lasted an hour and a half.  Before the operation, the surgeon mentioned that he might need to put some bandages on the area to help protect the stitches, but he wasn't sure.  I was absolutely shocked when they returned Catherine to me with this on her head:

According to the surgeon, the operation went well.  We were told to keep the bandages on at least 24 hours, but preferably 48 hours.  He said that some kids will try to pull it off themselves, which could rip the stitches.  Once it comes off, we have to put a prescription-level antibiotic cream on it 3 times a day. We also have to shampoo it carefully every day and give her another antibiotic through her g-tube 4 times a day.  I guess infection is a big risk with this surgery!

She will have the stitches for 4 weeks, or right before Christmas. 

When Catherine woke up from the surgery, she was of course groggy.  But, she kept touching the bandages.  I told her that the doctor put a silly hat on her head to protect the stitches, but that she would only have to wear if for 2 days.  I asked her if she wanted to see what it looked like.  She said yes.  So, I held her in front of a mirror. 

Thankfully, she giggled when she saw her "silly hat" in the mirror.  The first thing she said to me was "now you can't comb my hair!"  Catherine's hair is quite wavy and gets tangled all the time.  So, combing her hair is usually a screaming and crying ordeal.  With these bandages, only a tiny part of her hair sticks out of the bottom. 

On Thursday, after Thanksgiving dinner, we had to take the bandages off.  Catherine wanted to keep it on, but we told her we had to take it off so we could start putting the cream on.  Catherine was quite a trooper as we removed several layers of white gauze.  The bottom layer, which was touching the stitches, had some dried blood in it mixed with her hair.  So, it hurt a little to remove that.

Then we have used the cream for another 2 days and actually washed her hair for the first time tonight.  We wanted to give the stitches as much time as possible to strengthen the incisions.  I know it hurt her as we had to wash her hair.  There were some sections which had blood and other gunk dried in there.  Some parts I just cut out, rather than cause her any more pain.  I bought some special de-tangling shampoo, but I am not sure it really made a difference.  I still had to put tons of conditioner in her hair to try to get a comb through it.  I also bought some detangling spray to use after I had rinsed her hair.  I think that did help a lot (of course she was pleased because it came in a Disney princess bottle).

I feel confident that with all the anti-biotics we are giving Catherine, she will not get an infection.  But, my bigger fear is that she will fall, hit the crown of her head and pop the incision open.  Sabrina's chin incision was popped open by a fluky fall, thus destroying any hope of having a pretty small scar.  Of course Catherine's "scar" will be on the crown of her head, completely covered by her hair.  So, unless she shaves her head, no one will ever see it. But, if it bursts open, it could become infected. 

As worried as the devil wants me to be, I have to remind myself that the stitches are completely on the crown of her head. So, to bump her head exactly on the top of her head would be quite difficult.  In fact, if she truly did land on the top of her head, I would need to be more concerned about a concussion or closed head injury than stitches breaking open. 

But, I know I need to trust God and not worry about this at all.  I am grateful for talented surgeons, prophylactic anti-biotics, skilled nurses, and an experienced six year old patient who is so calm in medical situations.  Catherine actually reminds us to give her her medicines, respects what the doctors say (of course that had bad consequences with her last surgery), and is careful with any kind of stitches, etc.

Five Days of Silence

On October 13, 2011 Catherine had surgery to correct her left eye.  The surgery was only about half an hour, but she was put under general anesthesia, which includes intubating her.  The surgery went fine.  We were all home by noon.  She was still under the influence of all the drugs she had been given during the surgery, as well as the painkillers we were advised to give her.  So, she basically slept on and off all Thursday afternoon.

We were told that she could go back to school on Friday, so we got her ready and took her in.  She did not talk at all that morning, and kept pointing at her throat.  I figured her throat might be sore, but she seemed fine other than her refusal to talk.

When I picked her up after school, her teachers and the nurse said that she has refused to talk all day.  hey said that she did a great job of using basic sign language, pointing and grunting to communicate.  But she had not uttered a word all day.  They also said that she refused to drink any water, which she normally does. 

That night she seemed fine, but still not vocal.  She and her sister played.  Catherine laughed without opening her mouth.  When I asked her what TV show she wanted to watch, she tried to spell it in the air with her fingers.  I pretended I didn't understand her in an effort to get her to speak.  She then ran to her bedroom and came back with one of the "Super Why" books.  She pointed to the title of the book, which is also the title to a TV show.  Sabrina figured it out (of course I had too) and screamed out "she wants to watch Super Why!"  Sabrina thought this was a game.  I was very frustrated and annoyed.

After dinner we got hte girls ready for bed, Catherine still being silent.  Robby took Sabrina to another room to read to her.  I sat in Catherine's bed with her.  She brought me a Fred & Ted book.  She opened it up and pointed to the words.  Then she pointed to my mouth.  Then the words, then my mouth again.  It was obvious she wanted me to read it to her.  I told her I would only read it if she would say the words "Fred" and "Ted."  I told her I would read all of the other words in the book.

The first time one of the words I wanted Catherine to read appeared, I stopped and looked at her.  She kept her mouth shut and pointed to my mouth.  I said "No, you say the word."  She shook her head no.  I said "Catherine, you can say one word."  She opened her mouth about a millimeter and mumbled something.  I accepted her attempt and read the rest of the words. 

Another word I wanted Catherine to read appeared on the next page.  Again, I paused for Catherine to read it.  She opened her mouth a millimeter and mumbled something.  On the next page, I paused for Catherine to read the word.  She simply closed the book, got out of bed and put the book back on the shelf.  She came back and started to cry.  This was very unusual; normally she loves having books read to her.

Her refusal to open her mouth started to concern me.  I asked her why she wouldn't talk, even though I knew she could.  She kept pointing to her throat and shaking her head.  I am embarrassed to say that I yelled at her some.  But I still could not get her to speak.  So, I got worried.  Very worried.  I thought maybe the surgeons left something in her throat.  Maybe they damaged her throat and she was unable to swallow.  If she couldn't swallow and clear out her throat, she would be at risk of aspirating or choking on vomit if she got sick in the middle of the night.  She could die.  I wasn't comfortable with her falling asleep at this point.

I told Robby that we should take her to the ER.  He said "because she's being stubborn and playing a game with us?"  I told him I thought she may still have a foreign object in her throat, or maybe they paralyzed her vocal cords.  Robby yelled at her, threatened that she better not be faking it.  We called the Scottish Rite nurse's line.  They said that if she would not open her mouth, we should take her to the ER.  So, I went.  By this point it was late at night and Sabrina was asleep.  So Robby stayed home.

At the ER the doctor used a tongue depressor to wedge her mouth open.  He looked inside with a flashlight.  He said that she had a "bruised uvula" (that dangly thing in the back of our mouths).  He said it definitely hurts her to talk, but that we just have to give it time to heal and that she should start talking again in 4-5 days.  He said that sometimes people will get serious throat infections as a result of anesthesia, but that she did not have that.  I asked what should I do while her throat heals.  He said "enjoy the silence."  He told us to pump extra fluids into her to make sure she did not get dehydrated.  We went home.

On Saturday she was fine, but still silent.  She also refused to drink anything.  She wasn't swallowing, so her mouth would fill up with saliva.  Every few hours she would open her mouth a little and a puddle of saliva would pour out. 

Still, she seemed well enough to take her and Sabrina to Disney on Ice.  They both loved it, watching every movement.  Sabrina chatted throughout the entire show.  Catherine pointed at the characters and jumped up and down when her favorites appeared.  When Cinderella's step sisters skated out, Catherine pointed at them, made the sign for NO and then hugged her own arms.  When we met the mean stepsisters in Disney World, Catherine tried to hug them.  One of the stepsisters pulled away from Catherine and sneered "I don't hug!" 

By mid day on Saturday, Catherine had gotten pretty good at using the sign language she knew, as well as making up her own signs.  Sometimes she would use her dry erase board to write down what she wanted to tell us.  It was almost always totally obvious what she wanted, although she did not speak.

On Sunday we took her to church and she did not speak there.  On Monday we took her to school and told them she had a bruised uvula.  Her teacher told me that during her guided reading group she refused to speak and pointed to her throat.

By Tuesday my patience had run thin.  Surely her throat was better by now.  I have had surgery and remember my throat feeling dry and sore for a day or two.  I cured myself by eating a bunch of ice cream.  Catherine of course would not eat ice cream.  But I couldn't even get her to drink some water.  I felt certain that if she drank some water, her throat would feel better. 

At times I thought it was becoming a game for her, a battle of wills.  She was toying with us, knowing that we were getting very frustrated with her.  I felt like all of our conversations were me asking her "yes" or "no" questions.  Or she pointing and grunting to what she wants, like a one year old does.  All of our communication with her had become very shallow.  There were times I would yell at her, threaten to punish her if she didn't speak. 

Robby would take over for me interacting with her when I got too frustrated.  He would do fine for awhile, but then he would get overly frustrated with her. 

Interestingly, Catherine and Sabrina still played well together.  They would laugh at each other even if Catherine wouldn't open her mouth.  Sabrina talked twice as much, basically interpreting Catherine's signs and pointing for everyone else.  There were times they would even fight with each other.  Catherine would make facial expressions, aggravated grunting sounds, and arm gestures to show her anger at her sister.

By Wednesday morning I was beginning to worry if she would ever speak again.  Would she be silent the rest of her life?  Would she be able to stay in a regular classroom if she was mute?  Should we sign up for more advanced sign language classes?  Should we get her an iPad so she can type to us?  Could surgery repair her uvula?  My mind was on overdrive with worry and wild speculation.

On Wednesday afternoon she had a follow up appointment with her eye surgeon.  I told him that I wanted a copy of all of the surgery notes and I needed the name if the anesthesiologist.  I told him that I think her vocal cords may have been permanently damaged.  Maybe she had had a stroke during the surgery and suffered brain damage.  I was not a happy camper and was pretty nasty with the doctor.

The eye surgeon said he is not an ENT, but he would look in her throat.  He wedged her mouth open with a tongue depressor and shone his light down her throat.  He told me to look at it,  It seemed pink to me.  He said it looked healthy to him and he didn't see any bruising.

He turned the light off and removed the tongue depressor from her mouth.  Catherine then said, clearly and distinctly, "So I can talk now?"  The surgeon looked at her and said "Yes, you can." 

When she wouldn't talk, I had no idea what Catherine was thinking. So, I assumed she wasn't thinking. When we were leaving the eye surgeon's office, we stopped at the hospital cafe so I could get a cup of iced tea. They were out, so I couldn't get any. As we were leaving the cafe and walking to the car, Catherine asked "Are you sad because they are out of iced tea?" This was the first conversations we were able to have in five days. It was so precious that we could talk again!


When she and I went to get Sabrina, Catherine ran into her classroom and shouted "My five days are up!  I can talk now!"  Apparently when the ER doctor told me her uvula would heal on its own in 4-5 days, Catherine took it as a directive that she should not talk for 4-5 days.

In fact, on Thursday when she returned to school, Catherine got "written up" for talking too much in class. 

Now that it has been two weeks after it is over, I have to remind myself that it was only a five day period.  I remember the ER doctor telling me to "enjoy the silence."  I didn't enjoy the silence.  I panicked.  I let me worst fears take control.  I accused the doctors of malpractice.  I yelled at Catherine.

Now my fears are gone.  I have the luxury of perspective.  I can now empathize with parents whose children are never able to talk with them.  It was so hard to have any meaningful communication with her.  I have always been a talker, but now I truly understood just how important speech is.

Practice IV's

Catherine divides all of her medical visits into two categories: ones when she gets IV's and ones when she doesn't.  Everytime we go to a doctor now, she asks me if she is going to get an IV or not.

The girls love to play with the toy medical supplies we have.  They give each other and me physical exams almost daily.  Sometimes they will also give their Barbie dolls and stuffed animals physical exams.

Today Catherine pretended to put an IV in Sabrina's arm.  It was cute to overhear Catherine telling her "Hold your arm still.  It will only feel like a small pinch."

 Success!

Nueropsychologist

Because Catherine received chemotherapy at such a young age and is now in school, the oncologist has directed us to meet with a neuropsychologist every three months. These meetings are good and bad for me. So far the sessions have been reassuring, but it does cause me to fret over every detail.

At the last appointment we talked about 3 issues: non-responsiveness, letter mix-ups, and phonics.

Catherine occasionally (maybe every few days) will answer our questions with completely non-responsive answers. For example, I asked her what she does in computer class at school. She said “Remember the eggs that became the caterpillar and then the butterfly?”

I was completely taken aback. In court hearings when witnesses respond with non-responsive answers, the judge will order the witness to undergo a mental health evaluation and a drug screen. Being unable to focus enough to answer the question that was asked is a bad sign, in my professional experience. So, this has naturally caused me great concern.

The doctor said that many toddlers have difficulty focusing, so this behavior could be developmental. It is a skill which children must learn. So we will watch this behavior.

Another issue I discussed with the doctor is that Catherine writes some of her letters & numbers backwards. Sometimes she writes whole words backwards. Or she will write them horizontal, and then vertical (making a sideways L out of one word). She can write complete sentences, but sometimes forgets to put spaces between the words.

All of this, according to the neuropsychologist, is developmentally appropriate. If Catherine is still doing this in two years, then we should worry.

For phonics, the concern is that Catherine had lost a lot of hearing due to the chemo. I had tried to teach her to sound out words, with no success. Her teachers in kindergarten said they use phonics as well as sight words to teach reading. Each week they concentrate on a different letter. Catherine has picked up on phonics. She is starting to sound words out at home and will talk about the letter of the week all the time.

One reason that I am satisfied that she gets phonics and the sounds letters make are the nature of her mistakes. One night while I was taking her to choir she told me that "choir" started with "Q." I told her know, it starts with "CH." She corrected me and said that "CH" sounds like "church." It was very hard to explain that she is being taught a bunch of phonics rules by her teachers, but the rules are only applied sometimes. Poor thing.

This week the letter of honor is "S." So this afternoon I asked her to name 10 things that started with "S." She did well: snake, shoes, socks ... but then she said "cereal." Close!

So the nueropsychologist and I both felt that Catherine is getting phonics. Yeah!!

Three Years Ago Today

I remember the moment vividly.

We had been told in August 2007 that Catherine had a small brain tumor, but it was nothing to worry about. In retrospect, I should have known to be worried. But we were pregnant with Sabrina, Robby was laid off, and we were spending every day at the Marcus Institute undergoing intensive feeding therapy (8 hours a day!) for Catherine. At the time I mistakenly thought that if we could get Catherine to eat all of our troubles would be over.

Then Catherine underwent a follow up MRI on November 8, 2007. I had a court hearing that day, so Robby took her. The MRI's are done in the radiology department at the hospital. After she wakes up from the MRI, we are normally sent home. On that day, Robby was handed the CD of images and told to walk across the street to see a neurosurgeon (that should have been a sign there was a problem).

Robby was told that the tumor was growing too fast and would require her to see an oncologist. The neurosurgeon still told Robby it was nothing to worry about. But, the neurosurgeon's nurse made the appointment for us for the next day (yet another sign: when one specialist makes an appointment for you for another specialist for the next day).

I didn't have court the next day, so we went to do some early Christmas shopping, lunch and then to the appointment with the new specialist. Robby had not filled me in on all the above details; he just told me that the neurosurgeon wanted Catherine to see someone "new."

That "new" doctor for Catherine was on the 4th floor of the Medical Office Building at Scottish Rite. When the elevator doors opened, I saw the following words on the wall: Welcome to the Aflac Cancer and Blood Disorders Service of the Children's Healthcare of Atlanta.

What? This is for kids with cancer!! My first thought was that we must be on the wrong floor, so that is what I told Robby. He said no, this is the right floor - this is just where the new doctor's office is. I thought "OK." I know how big organizations have to sometimes fit office space in wherever they can, so that explanation seemed plausible.

So we waited until we met the doctor, Dr. Claire Mazewski. Catherine was 27 months old, so the doctor sat on the floor with her. We sat on the floor with her. At the time I was 8 months pregnant with Sabrina. The doctor had a big bag of small toys which Catherine played with. We discussed her extensive medical history. She told us that the tumor was not a solid tumor and was located in the center of her brain, so Catherine would be treated with chemotherapy for 18 months.

While I was reeling from all this information, I asked if they would do a biopsy. The doctor asked why and I said "to rule out the possibility that it is cancer." Dr. Mazewski looked at me oddly and asked what I meant. I said "shouldn't we do a test to make sure that it is just a benign brain tumor and not cancer?"

The next words from the doctor are what I will always remember: "It is cancer. Only cancer would grow that fast."

I started sobbing. Catherine got me some tissues (which are kept in every room on that floor) and handed them to me. Just picture me and my enormous belly containing Sabrina were sitting on the linoleum in the examination.

Dr. Mazewski explained that the location of the tumor would make a biopsy dangerous; it would damage her brain too much to get to it (her tumor was in the center of her brain and not very accessible). She also said that they know what kind of tumor based on the location and what areas are involved. She said that even if it wasn't cancer, which she was sure it is, it would need to be treated with chemo drugs to stop the growth.

And so began our journey ... 18 months of chemo, countless blood & platelet transfusions, so many ER trips. Scottish Rite became such a part of our lives that when she came off treatment it was strange to not be there all the time. I remember thinking I had tons of free time when her treatment ended.

I am so grateful that we ended our treatment 20 months ago and there is no evidence of tumor regrowth. I am grateful that Catherine's tumor would not respond to radiation and was not operable. Her little brain was protected from the harshness of those treatments. Mostly I am grateful that we still get to hold her everyday ... for her smiles, her giggles, her hugs.

Breaking New Ground

Catherine started kindergarten last month and everyone asks me how she is dealing with it. She seems to enjoy it. When she got off the bus the first day I asked her how it was and she said "great." I asked her how the bus was and she said "that was great too." She has never resisted going and we have had no reports of her crying or fussing about being at school. Her speech, coloring, and walking have all improved. She is constantly showing off her new found knowledge: reciting the pledge of allegiance, singing the months of the year, etc. But, she loves trying new things and always has. So, I can say she is fine with kindergarten.

But, kindergarten does not seem to be fine with her. She is an anomaly. Her teachers, the counselor, the school nurse, and the staff there are not sure how to deal with her medical issues. We have had several meetings, some with a huge number of people in them (including representatives from the county office).

At one of the meetings, Robby asked "What do you do with all your other kids with feeding tubes?" The county director looked at us incredulously and said that there are only a few other kids in the entire county with feeding tubes and none of them are anywhere close to being in a regular classroom. She told us that Cobb County has never had a child with a feeding tube in a regular classroom. She said the other children with feeding tubes have such severe medical conditions that they are in a completely different educational setting, that those children have very little hope of learning and have profound cognitive delays.

Thankfully, the principal immediately chimed in and said that those classrooms are not appropriate for Catherine and they will not even consider putting her in there. The principal told us that Catherine has more medical problems than all of the other students at her elementary school combined, but they will deal with them.

Of course Catherine is our "normal" and we are completely used to all of her challenges. So, we think of all these medical issues as no big deal. Plus, compared to where we have been, we are on easy street. Right now she is mainstreamed into a regular classroom and we have seemed to work through a lot kinks. It is our prayer that she can remain there and thrive like all of the other kindergartners.

Catherine still gets semi-bad reports from school regarding her behavior. However, most of those reports are for transgressions such as not listening to the teacher, not sitting still, talking at the wrong time, yelling in the hallway, refusing to do her worksheets, etc. We have taken down princess posters and removed toys as punishment. Today Robby took away her favorite Disney fairy shirt. I am considering letting Sabrina wear it in front of Catherine.

We have promised Catherine a trip to Chuck E. Cheese if she has good behavior for five days in a row. So far, she has not accomplished that goal. But, maybe she will someday.

Kindergarten has been a big change for all of us and we are adapting, but we will make it through!

Physically Ill

Catherine and Sabrina are absolutely fine, but recently I have had to do some basic research on brain tumors again. I needed to familiarize myself with the various types of tumors, how they are named, where in the brain each occurs, which can be resected and/or radiated, which need chemotherapy, and the side effects and survival rates of each.

Last night, as I was doing this research, I remembered how I felt in November 2007, when Catherine was first diagnosed. I remember sitting in the doctor's office with a pad of paper and asking the oncologist to spell all those medical terms. Then I went home and googled scary terms like "optic glioma," "vincristine," and "carboplatin." I remember searching the internet for survival rates and what factors could improve her chances of survival. Did I have any control over those factors? My controlling personality wanted to steer the course of this journey.

I spent days doing internet research. I was terrified. I had never read medical journals before and struggled trying to make sense of them. But, it was essential for me to understand as best I could what was in Catherine's brain. I remember the fear and how it manifested itself physically: I was shaky, weak, and nauseous for days. Actually, weeks. Well, maybe months.

Last night as I was doing research for a project I am working on I experienced this same reaction. This time I was only doing research for academic purposes, not to help my daughter. Yet I still felt that same sick feeling in the pit of my stomach. I had trouble walking down the stairs, shaking as I held on to the handrail. I had to hold back tears. I was in utter shock at the facts I had learned.

Perhaps it was the statistics that got me. There are some brain tumors that only have a 10% survival rate with children. That means that 9 out of 10 kids with that tumor will not make it. There are a lot of brain tumors with only 50% survival rates. It breaks my heart.

Perhaps it was the side effects that got me. Radiating a young, developing brain can have devastating effects. Some children have to relearn how to walk. They lose abilities they have had for years. They develop permanent learning disabilities. They are alive, which is priceless. But the price they have paid for their life is high.

I have seen firsthand with my own daughter the neurological damage she sustained due to eighteen months of chemotherapy. We are working hard to build up her physical skills. But, it still breaks my heart when I see one- and two-year-old children who can hop on one foot, skip, kick a ball, run, play hopscotch. Catherine will some day have those skills, but not yet. I am so grateful that she doesn't seem to notice her lack of physical strength and coordination.

I am of course grateful that the only major lasting side effect we have is her physical limitations. I have so many cancer mom friends whose children are functionally blind. Who have colostomy bags due to colon removal. Who are wheelchair bound. Who have lost the ability to use portions of their body due to strokes.

Or, everyone's greatest fear, there are the cancer moms I know who have empty laps where children used to sit. Who celebrate birthdays by releasing balloons to heaven. Who light a candle on Christmas morning to remember the child who used to have presents under the tree.

So it thrills me to help Catherine learn to hop like a bunny. To kick imaginary balls. This physical therapy/play time is wonderful and I treasure it.

But brain tumors still make me physically ill. Even when I am not holding a patient in my lap in the hospital. Even in a clinical medical journal, in a purely academic sense. It makes me sick.

A Torn Heart

Camp Sunshine offers programs for children with cancer and their families. We have attended numerous toddler programs as well as support groups for parents during the past two years.

Every two weeks Camp Sunshine offers a music class for toddlers. We attend about every other time, due to our work schedules. I wish we could go every time, as Catherine really loves to participate in everything. She sings, dances, wiggles, and plays with the instruments. We have also come to know and treasure the children and their families who attend.

Recently Robby asked me to delete old pictures off the computer to make room for more. As I went through the photos, I saw pictures of two year's worth of music classes. It was such a journey of memories ... a painful journey.

I remember clearly the very first music class we attended in December of 2007. We were 8 months pregnant with Sabrina. Catherine had been diagnosed with a brain tumor just two weeks earlier. I was convinced that God was about to give me Sabrina because He was about to take Catherine. We were trying to force happiness and joy out of what we thought was the last few months of Catherine's life.

The first family we met at Camp Sunshine was the L's. We had an instant connection with them because they were 8 months pregnant with F when their two year old daughter, S, was diagnosed with a brain tumor. When we met them, S had had surgery and chemo and was in remission. They felt victorious and were full of hope. Meeting them made me think that little kids can survive cancer. That maybe there was a chance Catherine wasn't going to die.

Sadly, S relapsed on Easter morning of 2008. Her brain tumor returned and tormented her little body for almost a year. Her parents were fabulous advocates for her and fought her cancer every step of the way. Through more surgeries, more chemo, radiation. Tragically, S succumbed to her brain tumor in February 2009. She was four years old. She loved coloring, stickers, and Dora. I still cry when I hold my four year old and think of S. The thought of death taking Catherine from me, robbing me of the pleasure of holding Catherine in my lap, saddens me. I no longer fear her death, but it still saddens me.

In reviewing the pictures from the music classes Catherine has attended over the last two years, I got the chance to remember S. Not like she was during the last few months of her life, when the tumor was wreaking havoc on her body. But as she was when she still able to sing and dance. When she had a great time strumming the teacher's guitar. Waving the scarves around to the beat of the music. As time passes, S is becoming a memory. My mind forgets S's smiling, happy face.

In looking through those pictures, the tragedy of childhood cancer struck me. Years ago my grandfather died of a brain tumor. He was in his 80's. He had been married (then widowed, then remarried). He had children, grandchildren, and great-grandchildren. He had been to school, had a career. He had traveled. He had been active in numerous organizations, including serving as a volunteer firefighter for years. As sad as it was to see my grandfather died, it cannot compare to the death of a four year old. He was at the end of his life.

S was at the beginning of her life. Cancer robbed her of kindergarten. Riding a bicycle. Learning to read books by herself. Playing soccer on Saturday mornings. Field trips on the big yellow school bus. Fighting with her Mommy while shopping for clothes. Ice cream dates with her Daddy.

Because Catherine is doing so well and has been in remission for 14 months, I am starting to relax and believe that Catherine will be fine. That she will attend kindergarten ... middle school ... high school ... maybe even college. My fears for her death are subsiding as every month (post treatment, tumor gone) passes.

Periodically my mind wanders to Catherine's death, but those thoughts are only fleeting. I can return to my reality: to Catherine's giggling, wiggling ways. To her tickling her sister. To her asking me to read her Cinderella, again. To her wanting to wear the Tinkerbell socks. That is my reality.

Yet for so many parents I have come to know, their reality is completely different. They remember their children through pictures and videos, to keep the memories alive. They have empty laps. They have bedrooms which are no longer used. Toys and books sitting on a shelf. Younger siblings who may have little or no memory of their older siblings.

Last week Catherine and I went to music class at Camp Sunshine again. One of our dear friends, A, was there. She is 6 and her brain tumor has relapsed twice. She is on her third round of chemo. She has undergone surgery, a stem cell transplant, and proton radiation. Two months ago she caught a virus which took a serious toll on her body. She lost almost a third of her weight and was hospitalized to keep her hydrated and force nutrition into her body through IV's. I had not seen A since she caught this virus. I was stunned to see the physical deterioration A had endured. Just two months ago, she was dancing and laughing with the other kids. This time she could barely stand up. She could not vocalize. I am not certain how much of the music she could hear. She was pale and lethargic.

I pray earnestly that A will rebound. Her family are strong believers and rely heavily on their faith through this uncertain journey they are traveling.

But I am left with such a torn heart, torn between joy and sadness. Between gratitude and anger. I am so filled with thankfulness and happiness for Catherine. Yet I am so sad and angry for S and the other children who have "gained their angel wings." For A and the other children who are struggling just to live.

I have an innate need for the world to be fair. God has done His best over the last few years to teach me that the world is not fair. It isn't fair that Catherine was sick. That any of these kids were sick. That some get better, and some don't. It tears my heart apart to think of little kids being sick.

Even when Catherine just gets nausea and is leaning on the toilet, screaming and vomiting, my heart hurts. I try to hold her steady so she doesn't fall over. I wipe her face in between her retching, give her sips of water. It is so horrible to see your child sick. For some reason, I usually say "You're breaking my heart, Catherine." But, she is four and takes statements so literally. Whenever I tell her she is breaking my heart, she says, "It's OK Mommy, we'll get it fixed."

Yet for many parents, their hearts can't be fixed. They will always be broken. The death of a child will create a hole in their hearts forever.

On the flip side, the triumph of a child over cancer will create a grateful heart forever. I literally get giddy sometimes when Catherine bubbles over with energy. When she smiles. When she crawls onto my lap and wraps her arms around my neck. When she tells me to lie down in the grass with her to watch the clouds. When she tries to teach her sister the alphabet. These precious moments of innocent toddlerhood.