Morgan Donato’s Blog

I KNOW!  I have not updated in a looooooong time.  Let’s go with the old saying “No news is good news.” K?  No?  Oy!  So, we are back from our doctor visit today, and Morgan is maintaining her weight, and has been taken off 2 more of her medications!!!!  Her GVHD is just a little tempermental, and in the worst locations (nuff said), but we are working through those issues as best we can.

Last year this time, we were “celebrating” the holidays in the hospital.  This year Morgan was in the big snow storm for 3 straight days!  I could not get her out of her longjohns and snowsuit.  She was devastated when the snow melted.

Home schooling is a huge drag for both of us.  What I have learned from this experience, is that I am NOT meant to be a school teacher - anyone who teaches needs a RAISE!  FOR SURE!!  What Morgan has learned, is that having mommy as a teacher - not so fun.  A lot of the teaching has fallen to our nanny Stephanie, whom Morgan adores, and seems to listen to better.  Go Figure!

Morgan is back at full speed for the most part, and is bored out of her mind everyday, wondering who is going to entertain her.  Remember the days when I was so sad that her energy level was down, and she could not even lift her head.  Why was I sad about that again?????  We continue to use good hand sanitation, and stay away from friends that are sick just to stay on the safe side.  However, we continue to see our friends Max, Sydney, Harley, Holden, Aden, Kelly, Dar, Rebecca, Will, Teddy (Stewie), Olivia, Mason, Amy, Abbey, Margo, and all our cousins as much as possible.

Thank you to EVERYONE, who continue to ask about Morgan, and how they can help.  We are continuing in the right direction, and really that’s all we can hope for to close out 2009.  As we begin 2010, our plans are to stay strong, and prepare for our celebratory trip to PARIS in the summer before (if I can help her pass 3rd grade) starting 4th grade cancer free!

One year ago today, my definition of normal changed.  Today is the day, one year ago, that we were told that Morgan HAD cancer.  I will always remember that moment of complete silence when the doctors looked at us and told us what was about to happen.  A lot has happened in the year we were diagnosed…a new president, a new economy (or lack thereof), a boy in a baloon (that really wasn’t), Jon & Kate getting divorced (tragic…pfft!), and Morgan trekking along on her path to recovery.

I took Morgan out for lunch today, and asked if she realized that one year ago today, we were told that she had cancer.  She looked at me like I had two heads.  She just shrugged and picked up her chicken finger and said, hmmm.  OK, she may not realize it, but I sure do!

As of this week we are six months out of transplant, and seem to be on the right side of things.  Yes, she is still losing weight, but each day, we shove, I mean, give her more things to eat.  This morning was 2 chicken fingers and a pancake, Sunday night with her dad was 6 bowls of pasta fagioli.  We started a year ago taking about 18 pills a day.  Today, Morgan takes about half that, AND even gets her meds ready herself.

Her energy is definitely returning, as she gears up to challenge her cousins to a dance freeze contest this Thanksgiving.  Last Thanksgiving we had our meal at the hospital, this year, Grammy and Pop Pops!  Lots to be thankful for this season.  Hug your loved ones tight, and enjoy every moment you can!

Morgan continues to do well.  So well in fact, that she was able to go to the Hanna Montana concert with tickets given to her by her friends at Children Hospital.  Thanks CHOP!  Morgan had to wear her mask on the way in, and was told by the Doctors that if any one was coughing or sneezing around her she would have to leave, but fortunately that wasn’t the case.

A few weeks ago after we stopped Morgan’s steroid treatment, Morgan stopped eating and drinking, and lost her sense of taste.  The pounds she had gained during the treatment were shed quickly. We went on for a few weeks trying to get her to eat and drink anything.  Morgan doesn’t drink soda, so water and juice were the only options, but no luck.  We could only get her to drink very small amounts of water, and hardly any food.

The tide has finally started to change, and Morgan seems to be back on track with a more balanced diet.  Meat is now the course of the day.  Filet Mignon to be exact!  She loves filet, medium rare only!  I overcooked them the other night, and you would have thought I was trying to feed her cat food!  Needless to say she didn’t touch it.

Morgan’s level of activity has increased, and her personality is coming back with a passion.  I love to watch her in front of the television when she thinks I’m not paying attention, and hear her start to hum along with the songs from her favorite shows and end up in a full on duet.  The girl can sing!

I have to stay on my toes when she gets in the playful modes, as it usually ends up with her challenging me to a wrestling match, or the occasional pillow to the back of the head if I’m not paying attention.  I actually like the pillow assault, because she laughs so hard, because she thinks it’s so funny.

Morgan loves to help me cook.   She’s a wiz in the kitchen, and helps me prep everything.  Now if I can just get her to learn how to clean!

Morgan still has a long way to go, and she still has many problems that inconvenience her in one instance, and cause her severe pain and discomfort on others.

In her medical world Morgan continues to make great strides, and in the our world she continues to show us how the monumental strength of an 8 year old can prevail over almost anything.

Life is Good!

All is going fairly well with Morgan.  Her skin is quite dry, and she sleeps like a basset hound till about 10am each morning - this, I can take!  I received a call from Morgan’s BFF’s dad regarding the Swine Flu vaccination and how it pertains to Morgan.

The vaccination is a live virus if taken as the nose spray/mist.  If you vaccinate your child this way you must STAY AWAY from Morgan for a minimum of 7 days.  If you have the vaccine by injection, no worries, because the injection is not the live virus.  Stay healthy - then we can see you soon!!

Thank you all for the (how do I say) calls to my parents asking when the hec I was going to update this blog.  I know, I know, in order not to get the calls, updating the blog is what gets it done.  So where are we?  Although the last photo on this site showed Morgan chowing down on a HUGE bowl of Matzoh Ball soup, soon after, she stopped eating and drinking.  It was a little expected because she stopped (finally) taking steroids.  Unfortunately, she lost too much, too fast, and became quite dehydrated and lethargic…quite the pleasure when home schooling…

The doctors said that if she did not stop loosing weight soon, we would be back on the feeding tube.  As of Tuesday, her weight has started to climb, so we have avoided that obstacle for now.  Home schooling, I can definitely say is not for me, and I am counting the days until she returns to school next year - just hoping that we prep her enough to have her ready for next year!

The doctors said that if she continues on the path she’s on, we may be able to only have to go in to see them twice a month, instead of every week!  Morgan is currently prepping for Halloween, she has decided to be an artist - go figure!

Sorry for the long hiatus with the not blogging.  Morgan has been doing pretty great.  She is finally off of prednisone - yeah!  The only upsetting episode each day are her stomach pains.  It seems that now since she is not eating as much, acids are building up in her tummy, giving her some major pains, but we’re working thru it.  Just trying to get her to start eating again…matzah ball soup seems to be a pleaser.

I started home schooling Morgan through a virtual charter school I found on-line.  Did you know that there are four types of cloud coverings?  No?  I do, I do…and a bunch more stuff I never thought I would learn. Besides reading, writing and arithmatic, I teach art, science, history and introductory to music.  Motivating either of us each morning is a challenge, but so far so good.

Morgan’s hair continues to grow, as does her texting skills to her friends who have started school as well.  Morgan watches the clock and waits to see what friends she will see each day after 3pm.  Her humor is back, as is her ability to wrestle her mom to a pin.  We were told that Morgan was doing so well, we were able to skip this weeks visit to the doctors.  We’ll check in the next couple weeks with another update!

We have been very busy with the freedom we have now been granted since we are 90 days out from transplant.  Morgan’s favorite time has been going to restaurants - ahhh true daughter mine.

We continue with her busy social calendar with Max, Sydney, Abby, Rachel, Aden, Olivia, Mason, Josh, Jason, Hannah, Harley, Holden, Aiden…and all the parents and relatives associated!

However, TODAY, was the true celebration of swimming in a pool!  Keli has a friend, Jen, who let us take over her pool.  It was FANTASTIC!!!  Keli watches our dog Bruno, who would not get off the diving board, and just laid there while the kids worked around it.

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morgan-in-the-water

Ventured out today after  the sun was lower, so that Morgan could take advantage of a sprinkler park in the city.  She was hesitant at first, but as you can see, she eventually took the plunge.

Reports from the doctors are very good.  We have been cleared to SKIP this Tuesday, and are not due for our next check-up until next Tuesday.  Morgan’s energy level is back to that of a “normal” 8-year old…so I am exhausted!

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All in One Video Pack powered by Kaltura

Morgan is now on a much better road to recovery!  She has managed to get through the dreaded GVHD, (for the most part), and her personality, and happy disposition are making a strong comeback.  These last couple of weeks have shown significant improvement.  As we are weaning her of her medications, her counts are still fluctuating, and there has been some give and take, but the Doctors say it’s normal, nothing to be alarmed about, and she is doing just fine.

In other news, Morgan has graduated to the next level in fine arts, Metallurgy, or wire art to be more exact.  We started to dabble a while back, but never really made and headway.  We recently gave it another shot, and Morgan took to it like a duck to water.  The art desk has now turned into a jewelers bench, and Morgan spends a lot of time there.  She is still somewhat reluctant to have her picture taken, and gave me some grief in doing so, but I just could not resist.  So here is a video of Morgan doing her thing, and some of her creations.

So we received a good report from the doctors today at clinic.  The steroids are being reduced a little more.  We’ve lost (OK, Morgan, not me) 2 pounds, but are still quite hungry.  The doctor asked Morgan how her rash was, and Morgan asked “What rash, mom, what’s a rash?”  Seems she doesn’t remember the ordeal back in June so much - thank G-d!

Morgan had a great weekend with her dad at his place.  She was soooo excited to stay with him, he spoils her rotten.  She is back to her social queen-ness.  Today she had a playdate with Ava, Sydney and Abby.  Sydney stayed for dinner - brisket.  Morgan watched that timer for the full 3 hours waiting for that buzzer to ping!  Tomorrow she sees Tr. Carol and Rachel. Thursday she’ll see Harley and Mercedes, and most likely Max on Friday.  We’re starting to take calls for next week…

Morgan’s hair is starting to grow back, but she thinks she looks like a boy.  I tell her she looks adorable.  She continues to amaze me, and make me crazy all at the same time.  Wouldn’t change it for the world!