A Difficult Year in Review

One year ago, our family was going along our merry way.  Isabella had finished her initial treatments and we had a couple clean MRI scans under our belt.  We were enjoying the summer and everything had just about gone to being normal.  Not the “old” normal from before Isabella’s diagnosis, but the “new” normal, which included nutritional supplements, periodic MRIs, and frequent occupational and physical therapy.

Physically, Isabella was just about back to normal.  Her hair had grown back to a nice thick curly nest and her scar from surgery was buried from sight.  Isabella just finished first grade and a psych evaluation put her right on target for her age, an amazing feat considering how much of her brain is gone and how much school time she missed.

But in the back of the minds of all cancer patient’s parents is the thought of recurrence.  Did she just trip on something from being clumsy or was it something worse?  Did she just jumble words from being tired?  Is that smile a little more crooked than yesterday?

On July 23 last year, we received the worrisome news that a routine MRI scan saw some suspicious spots appear in Isabella’s head.  For the next several weeks, we would go back and forth on whether this was actual tumor or perhaps necrosis (dead cells) caused by radiation.  We made several trips to Philadelphia, Boston, and DC to speak with other doctors to get second and third opinions.

And while we waited, we began to see signs of physical deterioration.  At first, Isabella began having trouble walking as she was no longer able to lift her right foot completely.  Then, her right hand and arm started getting weaker and weaker until it ended up hanging useless at her side.  Then she began speaking funny and drooling more, showing more evidence of neurological issues.

Follow up MRIs not only showed that the spot was growing, but there were new spots that moved to the other side of her head.  The evidence pointed to tumor and the hope of curing a recurrent tumor is infinitesimally small.  We were both physically and emotionally exhausted.  With every event, we thought, would this be her last?  Was this her last birthday, Halloween, Christmas?

Finally, five months after we found the spot, we began multiple rounds of chemotherapy.  We were no longer under any clinical protocols, but we would now basically throw anything at the wall and see what sticks.  We started off with a low dose mixture, but that didn’t seem to have much effect, so we moved to a high dose concoction.  The high dose chemo requires a week long stay at the hospital and would cause nausea and low blood counts.  With low white counts, Isabella would suffer several fevers, which required us to spend another week at the hospital to get treated with antibiotics.  It also made Isabella’s hair fall out again – her beautiful curls giving way to reveal the ugly scar.

But somewhere along the way, Isabella’s symptoms stabilized.  It’s not that they got any better, but they stopped declining at such a rapid pace that had us wondering whether she would live to see Christmas.  Two chemo cycles went by and it was time for another MRI.  Few people can relate to the “scanxiety” that parents feel on the days leading up to an MRI scan, but ours was in full gear.  Thankfully, the scans showed the tumor was stable, so we decided to continue with the chemo.

A person can’t handle too many rounds of this high dose chemo.  At some point, the body will not be able to recover from the poison being injected into the body that not only kills tumor cells, but a lot of other important components, such as the bone marrow that creates the blood components.  Also, at some point, the remaining tumor cells will become resistant to the chemo and either another mixture of drugs will need to be tried or the tumor will continue to grow.

So that brings us to today.

Isabella has a very difficult time walking now because of her severely weakened right foot and leg.  Think of a zombie or a mummy walking, dragging one leg behind them as the other leg walked forward.  We finally ended up getting her a brace for her foot, which has actually helped her walk much better, but her balance is still compromised.  Still, it was a pretty dramatic thing to watch a girl who was running, and hula-hooping, and cha-cha-sliding not be able to walk normally after just a few weeks.

The same goes for Isabella’s right hand and arm.  Although she became a full-fledged lefty after her surgery, she had regained almost all the strength in her right limbs as she was able to do the monkey bars and swing a bat and even swim without a floatie.  But now, her right arm and hand are just about useless.  We work with  her on a daily basis to do exercises and we’ve seen some encouraging signs of strengthening in her arms and legs, but she still needs plenty of assistance with basic tasks such as getting dressed and going to the bathroom.

What’s even more distressing is her decreasing cognitive and verbal skills.  As I mentioned before, a year ago, she was right on track schoolwise, but as the tumor grew, Isabella found it more difficult to concentrate and to form sentences.  We always knew that one of the long term side effects of radiation is decreased cognitive ability, but it hasn’t been easy watching a very bright girl not be able to do simple math anymore.

You’ve heard how some people live paycheck-to-paycheck.  Well, for the last year, we’ve been living cycle-to-cycle.  Everything starts with the first day of chemo when we check into the hospital.  We stay in the hospital for a week as the chemo is administered, then we go home.  For the next couple weeks, Isabella then gets her blood drawn several times to see what her platelet, red counts and white counts are.  In the meantime, she may get transfusions or neupogen shots to help her counts recover.  Once her counts recover, we then start another cycle.  The time for her counts to recover varies from cycle to cycle, which makes any sort of long-term planning impossible.  We can’t plan vacations more than two weeks away, or even simply RSVP to a party because we don’t know where we’ll be in the cycle.

Isabella’s most recent blood work shows her blood counts are back to normal and her doctor is ready to start another round of chemo.  Our dilemma is do we keep doing chemo and for how long?  At some point, the chemo could be what ends up killing her.  But if it is seemingly keeping her stable, what choice do we have?  What other treatments are out there?

I haven’t really posted a lot because frankly, it is difficult to write about certain things.  There are good days and bad days.  I certainly don’t feel like writing on the bad days, and on the good days, I like to enjoy with the rest of the family. The hardest question we get is “How is Isabella doing?”  On the one hand, things may appear stable for now, but brain tumors are like ticking time bombs, waiting to explode.  But the one thing that this whole experience has taught me is to enjoy every day as they come.

Thanks for reading this blog.

A Chance to Help

We’ve all had many opportunities in our lives to help others.  That help may come in many different ways from helping someone open a bottle of ketchup, to helping someone do homework, or helping someone move from one house to another.  Usually, most of our help is offered to people close to us, whether it be family, friends, or other acquaintances.  But it isn’t often that we are given the opportunity to save someone’s life, and it’s probably even rarer to save a complete stranger’s life.

On a couple of occasions, I've posted about the bone marrow donor program (DKMS) and encouraged everyone to become a donor.  Recently, I received the following note from a friend.

Hi Roneil, I wanted to let your family know that I signed up with DKMS back in 2009 when you wrote about the little girl who needed a bone marrow donor. Today I go for a bone marrow blood draw because I have been found to be a potential match for a man with leukemia who needs a transplant. I hope I'll be a match and able to help! I wanted to say Thank You to you for the post, I don't think I would have ever signed up if you hadn't made it so easy. I hope things are going well, and healthy, for you all!! ~Erin

Good luck, Erin.  Even though you’ll be doing all the heavy lifting, I am glad I was able to potentially help save someone.  Hopefully, this note will also inspire others to sign up and become donors.

http://www.dkmsamericas.org/