Megan’s Strength

It is 11:36pm, Monday, 02/15/2010. This is Megan’s Mom.  The last blog that I posted was about Meg’s good MRI report on Friday, 01/15/2010.  A lot has happened since that day.  After receiving that MRI report, we were happy….but, our happiness was short-lived.

Into the weekend, we realized that Meg had suffered a loss of vision in both of her eyes.  She didn’t complain or panic.  She seemed in denial or unaware or just distracted by her pain and the morphine.  My heart skipped a beat when I asked her to comment on something and she asked me to turn on the light…..but, the light was already on.  With everything that we had already been through, I had learned not to panic….no matter what we were faced with.  I pressed Meg for more details.  She said that she could see shadows, but that everything was dark. 

Uncle GG, Aunt Cindy and I did some detailed research, to try to determine if the vision problem that Meg was having could be related to a reaction to the extended release morphine that she was taking.  We were all very uneasy and, in our hearts, we knew that this was not a good sign… but, it just didn’t make sense that the MRI report was good and Meg was experiencing such a severe symptom. 

On Saturday morning, 01/16/2010, I tried reaching the Oncology Department at Children’s National, to advise them of Meg’s vision problem.  The on-call doctor assured me that Meg’s loss of vision was from the morphine and that her vision would return to normal upon discontinuing the medication.  She said that some people have more profound vision changes from morphine than others.  I pressed her and expressed my concern….”Are you sure that I shouldn’t worry?”….”No, you should not worry.  Your daughter’s vision changes are most-likely related to the morphine.”  Even so, we continued to worry and now, I was hesitant to continue the morphine. 

Meg’s Neurologist wasn’t going to be at the hospital until Tuesday, because it was a holiday weekend.  We didn’t know what to do.  I felt helpless, so I sent Dr. P an email late Sunday night, explaining Meg’s vision loss and my fear.  On Monday morning, I rec’d a short response – “From the MRI, I doubt it is tumor related   I can see her Tuesday am ,if she is still having visual issues“.  I emailed him again, expressing my fear of delaying treatment and asking for his advice.  He responded “I doubt delay till am would change things. If you get her to oncol clinc at 830 iwill see her”.  I made one final email attempt on Monday and my communication said the following “I’ll see you in the morning. My observances: no vision, slurred speech, agitated, slightly disoriented, but could be from loss of vision.  She asked to take a bath.  She still seems to know what she wants and is doing, but she is a mess.  She had been receiving extended release morphine every 12 hrs consistently beginning at clinic this past Thursday at 11:52am.  I did not give her any morphine last night…just Toradol every 5.5 hrs.  I am scared.”  This time, I did not receive a response. 

Late in the day on Monday, Dr. P called me.  He seemed confused, as if he hadn’t previously realized that Meg had lost her eyesight.  He seemed to indicate that my third email concerned him.  He indicated that he didn’t feel that Meg’s vision loss was a reaction to the morphine.  He began to make mention of other possibile medical concerns, such as a stroke.  He wanted us to meet him at the hospital first thing Tuesday morning, 01/19/2010. 

We ushered Meg into the car at 6:30am Tuesday morning.  Traffic was tough and by the time we got Meg into the hospital, it was around 9am or so.  Dr. P met us and fast-tracked Meg to get a CT scan of her brain.  He wanted to see if she had signs of a broken blood vessel.  Meanwhile, Meg was no longer on morphine and the Toradol was not cutting it.  Her pain was excruciating.  She laid on the hospital bed in the waiting area after her CT scan.  The test only took 5 minutes.  Dr. P came in and said that the good news was that Meg had no sign of a stroke.  He further indicated that the CT scan only showed minimal signs of fluid in Meg’s brain, but that they suspected that increased fluid and pressure were what was causing her pain and possibly her loss of vision.  They thought that if Meg’s brain pressure could be relieved she might get her vision back.  They suggested that an external drain be put in Meg’s head, which they described as a fairly simple procedure, that would be performed in their Pediatric Intensive Care Unit.  We all felt some relief at the thought of Meg having some reduction in pain and we hoped for her eyesight to return…We told Meg that she’d go under anesthesia for the short procedure and that we’d be there to take care of her when she awoke.

Later Tuesday night, 01/19/2010, after Meg’s drain insertion, as the doctor’s ran some follow-up tests, Uncle GG and I slowly learned of a complication that had occurred during the drain insertion.  Meg had hemorraged when the doctor had inserted the catheter.  The hemorrage had impacted her motor skills and her ability to communicate.  When Meg awoke fully, on Wednesday morning, 01/20/2010, we learned that she was paralyzed on the right side of her body, including her trunk, her neck and her mouth and face.  She could no longer speak and she couldn’t express any emotion.  She still couldn’t see, either.

At first, when I realized what was happening, I felt ill.  It felt like all of the blood drained from my body.  GG couldn’t say much.  I could tell that he was trying to hold it together for Meg, for me….for the sake of sanity.

We tried to find ways to communicate with Meg.  I was so afraid of what was going on in her mind.  She was able to respond to the doctors’ requests to squeeze with her left hand and move her left foot. The doctors indicated that they hoped for improvements over the next 48 hours, which might indicate that Meg’s brain would repair itself more quickly, giving hope that she’d get back control of her body and/or her speech.  But along with that hope, we were given the news that, when they had re-MRI’ed Meg early Wednesday morning, they saw that her tumor had progressed extensively and was growing out of control.  How could that be?  Just 6 days before, they told us that her tumor’s growth had slowed and that she seemed to be responding to the clinical trial drug.

We spared Meg the news about the MRI, because we felt that she needed time to recover from the brain hemorrage and the shock of the loss of control over her body.  My G-d how much could one child take? 

I called in reinforcements.  This was beyond my strength as a caregiver – beyond my strength as a mother.  Meg, GG & I were in so much fear and shock and pain….I called Aunt Cindy for help….  “My daughter can’t move; she can’t see; she can’t talk or even cry. I don’t know how we are going to get through this.”

We tried to calm with Meg and reassure her that she was still recovering from the surgery and certain areas of her brain had been impacted by the procedure and needed time to heal.  We were able to determine that her thought process was working fine, by having her squeeze our hand with her left hand when we asked her questions. 

The situation was a nightmare….I will never forget the blank stare in Meg’s face.  My G-d.  How could this happen.  I have never been so distraught….but, I had to try to hold it together for Meg’s sake.  I didn’t want her to hear me cry…or hear fear in my voice…or feel my sense of desperation….but, we were all so very, very desperate.

The next days were surreal. Every moment was filled with discomfort for Megan.  She suddenly found herself helpless and subjected to an invasion of her personal space, anguish, fright, sadness, panic….only G-d knows what Meg thought and felt, because she could not speak.  Now, we stood helpless, as different nurses came on and off shift in the PICU, each applying different levels of care. Meg needed to have her body repositioned, her head and neck heated for stiffness from her inability to move.  She was helpless…and I felt helpless, too.  It was as if I was launched into a role as nurse, but I just didn’t know what I could do to help her.  I was afraid to move her, of hurting her sore muscles, of offending her sweet feelings, of not doing the right thing, of not saying the right thing….I was so scared of what Meg was going through mentally…..I felt so much fear and pain.  I just can’t put it into words.  There are no words.  As if Meg hadn’t already had to be so strong and brave and enduring for the last year and a half, but now….she was bedridden and helpless.  At 16, she did not want this.  She had been a beautiful independent young woman.  She wanted her dignity. My G-d, why?…how?

As the days progressed, I battled with the doctors, the nurses….and even, G-d almightly.  Meg began slowly regaining some strength.  She wiggled her right hand a tiny, tiny bit and wriggled her trunk around when she was sick of a position.  She must have been screaming inside…..”Move me! I’m sick of laying on this side!  I’m in here! Help me! I hate my life!”  I tried to learn by working with the intensive care nurses – how to re-position Meg’s body, how to keep her from getting pressure sores, how to make sure she stayed clean and as comfortable as possible. We tried to monitor her pain and make adjustments when she squeezed our hand, indicating that she needed more meds.  It was a constant battle. 

All the while, I cried to the nurses…..I need to communicate with her.  She and I had such a great relationship….our strength had been our words.  I used to say to Meg “Words are power.”  She and I had always agreed that we’d always talk everything through, no matter how difficult and that we’d hold each other up, so we never felt alone and scared.  But now, we could no longer share words.  I spoke, but she could not respond.

I talked to her.  I told her that I would not leave her side…that I would stay with her…that I would get her out of the hospital…that I would get the tubes and wires off of her…I told her that I’d find a way for her to communicate with me.  I held her hand to my cheek, so she could feel my tears.  I told her that I knew that she must be angry and scared and maybe even want to die.  I told her that she had a right to feel that way and that this was not supposed to happen.  I told her to stay strong and that I would keep fighting for the doctors and nurses to help her in every way that I could. 

I fought for an assistive communication device for her.  I was angry that 6 days had passed since my initial request for communication assistance.  I fought to get her physical therapy, to move her muscles, so she wouldn’t get even more sore and stiff.  I fought for her to be tested to see if she could swallow…they hadn’t tried to feed her or give her liquid.  It seemed that they just left her to lay there, helplessly, to suffer through all of the trauma that they had inflicted above and beyond the tumor itself.  I cried “BUT SHE IS ALIVE!”.  She deserves care.  It doesn’t matter that she has a tumor.  She is a human being!   

As the days progressed, Meg seemed to be having more pain and we had to keep increasing her pain medication.  She was so strong.  My G-d…what she endured.  Our group of close friends and family worked together through shifts, staying with Meg, always holding her hand.  She was never alone….never.

On Friday, 01/29/2010, we moved Meg to The Dove House hospice facility in Carroll County.  Although it wasn’t our home, it felt like home.  It felt good to be back in Carroll County.  All of Meg’s tubes and wires were finally removed, except for her pain med IV.  She was asleep and no longer in pain, but we felt that she could still hear us.  The staff and nurses at The Dove House were so wonderful.  We had close friends and family there to help us get through.  Meg was surrounded by love and care and comfort.  She wore her shirt that said “A smile is a curved line that sets things straight.”  It seemed like the perfect thing for Meg to wear.  After all, it represented Meg’s point of view on life.

Meg passed in her sleep at 3:58am Monday morning, 02/01/2010.  There was a beautiful sunrise that morning and a calm in the air.  As I walked into my house, I felt that the pain was gone.  Meg had been released from her pain – just like a dove or a butterfly – she was free.  My G-d I was going to miss her….but, she wouldn’t suffer anymore.

Although Meg is gone, I have so many special things that I’d like to share with all of you.  Meg’s legacy must go on.  You all have said it again and again….Meg was so full of life.  We would like to continue sharing stories, poems and thoughts with you.  Meg’s legacy will be Hope For Megan, which has been helping us with Meg’s treatment costs and we hope to see it continue to grow and blossom into a wonderful platform to help other children, like Meg.  We pray for a cure for brain cancer.

Blessings to all….Hold those that you love close to you…always.  Never take one day for granted.

It’s 2:25am.  Good night.

Joanne

aka, Megan’s Mom