docsmomma

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October 12th, 2011

Happy Marrow Day Joey

It was one year ago today.  I was still awake.  I walked from Joey’s room towards the rose gardens around this time.  He was sleeping, and I knew nothing was going to happen right then.  I had a friend whom I had just met with me, and we silently approached the statue of St John Paul II and placed a candle she had brought for me.  Together we prayed and lit this candle.  The only words I could mutter were “Lord please let this work.”  From there, we went to a secluded corner of the garden.  An outdoor chapel.  We sat down, and she prayed with me.  I cried.  I was terrified.  Would the donor back out at the last minute?  Would these new cells engraft?  Would he succumb to infection?  Would this finally be the answer we have sought for so long, an end to this awful disease that had been ravaging my son?

We slowly started back.  I hated being away from Joey, but I needed this time to gather my thoughts, and the nurses promised to call if he woke.  I stopped at the gate.  “There is no Profit in Curing the body if in the process you destroy the soul.”  Please God, don’t let this destroy his soul, his will to fight.  I knew the worst was yet to come… but the promise of new life was that day.  It was the start of day 0.

It was 1 year ago TODAY that a stranger was preparing to go in, have a needle inserted into her own bone, and marrow extracted out.  What was she thinking? What was she feeling?  Was she nervous?  Scared?  Excited?  Would we ever get to know who she is? Read the rest of this entry »

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July 16th, 2011

Make A Wish

Yesterday, we had our Wish Presentation… The big reveal.  Up to this point, all we knew was the dates and that we would be at Disneyland.  The big reveal was where we got the details, the itinerary.

We arrived at Five Guys Burgers and Fries at 5 PM to find a table covered in a Disney table cloth, with Make A Wish Balloons and a Mickey Mouse Balloon.  On one of the chairs was a Disney Backpack filled with Goodies for Joey - markers, crayons, coloring books, a Buzz Lightyear computer type thing, a game.  Stuff Joey would love.  As he opened the backpack and took out the toys, he wanted each one opened.  So while he played with his new goodies, our Make A Wish granters sat down with me and went over the Big Wish.

Monday morning, we will be picked up at 3 PM by a limo and taken to the Disneyland Resort, where we will check into our hotel to begin our magical trip.  This day will be spent settling in, enjoying the pools, the big water slide, and Downtown Disney.  We will choose our dinner this night and settle into bed after setting our character Wake up Calls.  Most of our meals we will be deciding on our own, courtesy of Make A Wish.

Tuesday morning, we will rise bright and early and enjoy a breakfast of our choosing, then head into the parks for the first of our magical days.  At noon, we have a private meet and greet with Joey’s very favorite, the one and only Mickey Mouse, in the Wish Lounge (a private room for Wish Families to enjoy during their Disney trip).  The day will be spent enjoying all Disney has to offer, and we will spend the next few days making reservations for any dining we wish to have on our trip.  That night, we will enjoy the fireworks while we celebrate how far our little man has come since the day he was diagnosed.  Then off to bed to dream more dreams.

Wednesday morning, we will be dining in Goofy’s Kitchen for breakfast, meeting so many wonderful Disney Characters at this buffet style, kid friendly Restaurant.  The it’s off to the Parks again for more fun filled time.  I anticipate cotton candy, rides, and lots of smiles (and tears from mom).  We are thinking of doing World of Color at the end of this night. Read the rest of this entry »

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July 3rd, 2011

Butterflies, Wishes, and Walks

Where does one begin when thoughts are circling through ones head a mile a minute?  I suppose I will start with the kids are such a joy this week.

They have starting to raise butterflies.  The little caterpillars arrived, and we watched them eat and grow, eat and grow.  We watched as the cocooned themselves, and David cried as one was knocked down and died.  We transferred these tiny little cocoons into the mesh home that came for them.  We will enjoy these little guys while we are able, and we eagerly await them emerging from their cocoon.

To me, it reminds me of each of my children.

David… he has blossomed into a wise inventive, creative, and compassionate young man.  At 9 yrs old, he is pushing and pushing to break free of the boundaries we have laid for him and find some independence in the big world.  He strives to be bigger, better, to make a difference.  He has gone from my shy little guy to a very outgoing young man who tells everyone whose anyone in his world whats on his mind.

Melanie… she has gone from my shy little princess who struggles to find words to a young lady who will tell you whats on her mind… even if she has to kick and scream to get her point across.  Her love for family is immense, and her heart feels like no 5 yr old I have ever seen.  She feels everything with a depth beyond her years. Read the rest of this entry »

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June 19th, 2011

"Curing" one to cause another

I am angry.  I admit it.  I just don’t see the sense in everything my Joey has gone through.  When Joey was diagnosed, I believed with every fiber of my being that we would beat histio and have no long term effects.  With each relapse, each treatment, I continued believing that.  Today though, I wish I still had that naive belief that he would come through this 100% unscathed.

Clinic today went as well as can be expected.  After he had his bone marrow transplant in October, he quickly developed Graft Versus Host Disease (GVHD).  Not the best way to explain this is his donor’s cells do not recognize his body, so they see him as an enemy and are trying to wage a war with his body.  This is treated with immunosuppressants such as Tacrolimus and steroids such as Prednisone.  Skin GVHD can be treated with steroidal creams.

His got bad, and we had to resort to a rescue method to get it controlled again while he was still in the hospital back then.  Since then, it has been MOSTLY controlled.  However, we have our flares and we up the meds again.  The goal is to eventually be able to wean off them completely, but that is not always the case for everyone.

GVHD can be dangerous is not controlled.  I know the seriousness of GVHD, and it does scare me.  I watch his skin consistently.  The doctors have to monitor for the rest.  Because of this, we have caught many GVHD flares early on, but sometimes it’s hard because he always has rashed up with heat.  As long as I can recall, he gets red when its hot, which masks the GVHD.

However, there is a difference.  We have seen that he flared several weeks ago.  We added in some creams, and it improved by last visit, so we continued.  However, this week it was not improved, so we are going back up on all his meds.

I want to scream!  We traded histio for GVHD.  And YES, I would do it again… but NO, its not fair!

On top of this, we will be testing for Diabetes Insipidus (DI).  His thirst is super high, but not always.  The question is, is he comfort/boredom drinking or is he doing so because his body essentially is craving it?  THIS is why we need to test him, and we are starting with a dedicated Pituitary MRI.

However, clinic was not all bad today.  The nurses and Dr. W brought in a birthday cake for my little Warrior and gave him birthday gifts.  Joey saw them bring toys and thought for sure it meant another poke or procedure, so he screamed and hollered at them.  I guess that’s expected.

While I know Joey is not “cured,” he is a survivor.  Now we just continue to monitor him… make sure his GVHD stays controlled and he has no relapses.  Make sure he stays healthy as possible.  And find out if he has DI.

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June 11th, 2011

Survivors

My sister bought me a CD I had been wanting as a thank you for helping care for her and my mom during my mom’s recovery from major back surgery.  The CD was Matthew West, Story of Your Life.  Little did I know the emotions that track 8 would stir.  It was a song that brought back memories and still gives hope.  It is my new song for Joey.  This song had become my theme song for my little warrior.

It talks of the feelings of diagnosis, of being told to give up, of faith being worn away, and strength that falters.  Then it talks of waking on the other end of the battle as a survivor.  The chorus, though… The chorus makes me want to sing at the top of my lungs…

Nothing can stop you now
Nothing can back you down
You never give up, never give in
You’re a survivor

THAT’S my boy!  Nothing stopped him, he never gave up, and today he is a survivor.

Granted, I know we’re not done… There is more to do, but his battle with histio… That is in the past.  Now we get to look towards the future.

And part of looking towards the future is days like yesterday.

Running with the sand between his toes, sunscreen lathered on every exposed inch of skin, and his sun hat and sun suit at the beach.  Life returning to normal.  A SURVIVOR.

Hold your kids close, cherish every second.  We are one of the lucky ones to come out the other end.  So many of our friends have had to have the strength to let go of their little ones.  I pray no one ever has to feel the fear, the pain, and the reality that so many we know have faced.  I hope one day we will all be survivors in battles such as this, especially the children.

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June 8th, 2011

"I HATE you"

We all hear these words at some point or another from our kids.  If there was a parents’ handbook they gave when you became a parent, it would say in there, “your kids will learn to hate you but never really mean it.”  Typically, you hear it when there is punishment happening, or when kids are pushing their limits and parents are reining them in.  We have to remind ourselves they just are mad they aren’t getting their way.

I have heard these words from David and Melanie on many occasions.  And honestly, it does not bother me much.  I know they don’t mean it.  But today, I heard these words from Joey, and it broke my heart to a million pieces.

I was pinning him down for the final poke in a series of multiple pokes to try to get his lab draw today.  We had 3 nurses helping hold him down while he laid on the hospital bed in the infusion center, wrapped in a sheet because of how violent he had gotten with us.  He looked at me with utter fear and anger in his eyes and screamed, “I HATE YOU! I HATE YOU I HATE YOU I HATE YOU.  I NO WANNA BE POKED!”

Read the rest of this entry »

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June 5th, 2011

Busy little worker bees

A few weeks ago, me and the kids planted flowers is small pots, and we monitored and tracked their progress.  Melanie’s were the first to shoot up through the soil, and she was elated.  David’s followed a day or 2 later, and Joey’s straggled behind until we almost gave up on them.  But Joey, in true Joey fashion, kept pushing. “Mommy, just one more time, ok?  Another day!”  Finally, we saw his pushing up, up, up.  Well, it came time to transplant them to bigger pots, as our flower garden area is no where near ready.  Mom’s been lazy and not weeded it yet.  We transferred them, and I worried they would die… The kids were a bit rough on them, but it was their project.

And they did survive.  So now mom has to get the garden weeded so we can put planting soil in and plant our flowers in the ground.  Well, guess that means I got 3 little worker bees who can help out!  So we try to spend 30 minutes or more each day weeding our little garden area.  What hard workers I have… When they aren’t throwing weeds with roots, dirt and all, at each other and me!

However, weeding our little garden came to a small break this week.  Gramma had to have surgery and needs the help of the Queen Bee and her little worker bees.  We arrived yesterday in full force, ready to jump in and help.  Dinner was served, kids gave free cuddles and made gramma smile, and we camped out for the night to help where we can.  Poor gramma is a bit sore still!  And what busy little helpers they have been!  Joey gives cuddles and likes to carry things to gramma and auntie, Melanie reads books and tries to be a little nurse, and David helps out but is more interested in flirting with the neighbor girl.  Yes, my little David has a HUGE crush on the neighbor’s little girl.

They have helped me clean grammas house and have helped bring smiles.  My little worker bees are so good at handling it all!  They just LOVE to help out, and I am SO proud of all their help!  I’m thinking when all is said and done, we’ll have an ice cream party!

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June 2nd, 2011

Question

Anonymous asked: First–I’d like to tell you something.–Traci–I am so very proud of you!!! You are quite a woman. I am so fortunate to have met you. You speak of heroes, but as heroes usually do, they deny being one. YOU are a hero, a real one. You have opened your soul to others and have helped make it possible for others to be available to be heroes, but you don’t wait like the rest of us, you dive on in to help others. Thank you. You are a true hero.–Dee

Someone sent this to me through this blog many weeks ago (to send me questions or reponses just click “ask a question”), and I remember crying.  Today I am responding.

Thank you, dear friend, for your wonderful and kind words.  I do speak of heroes, all the time, because I have a tiny hero living in my home, and so many heroes who live in my heart as well.  I don’t think I will ever see myself as a hero, but to know others see me that way, it touches me so very much.

I feel so unworthy of being called a hero.  My job is to teach my children, to protect them, to fight for them - and now it is also to fight for the children who battle histiocytosis.  To me, I am only doing what I feel must be done, for if the parents of these children will not fight, will not raise our voices and be heard, how on earth can we expect those unaffected by this disease to do so?

To me, however, I can not view myself as a hero and am humbled that someone does.

To me, the true heroes are the ones fighting this disease on the front lines.  They are the ones who cry, pray, run fundraisers, and stand by families such as mine.  They are the ones who have stood by our sides even though it was hard for them to bear.  Those are our heroes.

And of course, the ones who donate life by donating bone marrow, blood, platelets, etc…  or the nurses and doctors who stand and fight to save the children and adults.

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June 1st, 2011

This day last year

How does one explain the difference one year makes?  One year ago today we were at Disneyland creating memories “just in case”.  We knew the reality we seldom spoke of.  Our son’s chance of being a survivor was so minimal that even the doctors did not speak about long term remission with us.  If the disease he had didn’t kill him, it was well known to us the treatment he was going to endure very well could, or could cause damage to his heart and kidneys that could lead to a sad and terrifying reality.  And this was before anyone had told us he needed a transplant.

So this time last year we were in Disneyland.  We were there when the park first opened, and we remained until the park closed, determined to enjoy every second of that day.  We rode rides, visited characters, took pictures, and tried to pretend everything was OK.

Today… we sit at home.  We play together.  We watch movies together and enjoy LIFE together.

Today Joey woke me up bright and early Read the rest of this entry »

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May 30th, 2011

When kids get sick…

The kids have been sick.  Now, for most people, their little colds would be nothing.  For me, it was a moment of complete and utter fear.

At first, I kept saying, “OK, all the kids have it.”  Then the big kids got better.  And Joey… He got worse.  He had clinic, so I wasn’t going to panic.  We arrived at clinic on Friday, and the doctor told me she wanted a Chest x-ray, just in case.  My heart stopped.  I felt I could not breathe.  Isn’t this how it started?  But Dr. W promised to call if anything was wrong.

So I get no phone calls and go about our merry business.  Joey seems to improve, not 100%, but better than he was.  And then…the fever starts.  Now, ever since he was little, the rule has been fever means admission, automatic.  Especially with symptoms.  Especially with coughing and “junky lungs.”  So I called the doctor.  I start packing a hospital bag - it’s the middle of the night.  I’m ready to cry as Joey, fever of 103 and cough and all, RUNS though my house laughing and screaming.

And the doctor tells me the chest x-ray shows a viral pattern… A COLD.  Nothing to panic about, keep him home and monitor, this is all to be expected.  And I celebrated, not him being sick, but the fact that he is considered “healthy ENOUGH” to be home while fighting off a bug, AND that his lungs are looking so healthy other than a cold.  I celebrated the first chance to be “mom” at home when he is truly sick, with a fever.  Granted, it’s a cold.  However, it’s the first time he has had a fever like this since December, and then it was a blood infection.  This time, Read the rest of this entry »

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