Thursday, February 10, 2011

Information Overload!!

     Well, the day is winding down.  Lily is having a play date with some neighborhood friends.  Zi is about to go down for a much needed nap.  I should probably be doing and folding the mounds of laundry that have piled up in only two days.  However, as I mentioned before one way I process information is by writing.   I will now attempt to "download" all the information from todays appointment with the Hematologist that is still whirling around in my brain onto this page of our blog   What better way to make sense of all the new information we received today and update everyone all at the same time.
     We had an appointment scheduled for 10:15 this morning.  This was during Zi's regular nap time.  As you can imagine it was a bit of a challenge keeping him content, especially due to the fact the Dr. didn't come into the room until almost 11:15.  I kept perspective the entire time realizing that he could have been speaking to a child's parents that were going through something much harder than we were.  They may have had a list of questions even longer than mine.
     The Dr. spent at least 45 minutes with us, covering both Zi's diagnosis of ITP and why, based on his lab results and clinical presentation he did not believe Zion has Leukemia.  Acute ITP usually presents after a child has experienced a viral illness.  Based on the fact that Zion was sicker than a dog about 3 weeks ago after his six, (yes six all at the same time) vaccinations and viral illness that came on at the same time, it made perfect since and confirmed even further the diagnosis of ITP.   Basically, he explained ITP as "friendly fire."  When Zion's  immune system was hit with a big job to do it "went into overdrive" and the antibodies that your body usually makes to fight infection for some "unknown reason" began attacking his bodies own platelets and attaching themselves to them. Then his spleen which has the job of destroying the cells that the antibodies attach themselves to gets a bit confused and just destroys these good platelets that the antibodies are hitching a ride with figuring they are "Foreign invaders."  Yikes, "information overload," hence the title of my blog today.
     The Dr. then went on to explain all our treatment options which ranged from doing nothing to admitting him as an inpatient and giving him an IV treatment over a three day period for six hours a day.  Based on Zion's age and stage of life (a one year old learning to walk) and the possibility of getting injured and causing dangerous bleeding the Dr. did not recommend the "doing nothing" option.
     So where do we go from here.... We have chosen the least invasive route to begin with and would like you to join us in praying that this approach would work and completely cure Zion's condition.  We began heavy doses of oral Prednisone today and will taper (or decrease) his dose every 4 days based on his lab results for an initial period of 16 days. Yes, that means every four days we will be going to the lab for blood draws.  In addition Prednisone has some unpleasant side effects. We obviously are not looking forward to this but are more than willing considering what our news could have been yesterday.
     I was so concerned to give Zion his first dose today.  Normally he takes medication well but the pharmacist warned me that although it was flavored it was extremely bitter.  She encouraged me to taste a little on my finger prior to administering it to him.  Let me just say, I can sum it up in one word...NASTY!!  I prayed big time before giving it to him and God is so good.  Zion took it like a champ and actually wanted more!  He also loves to suck on Lemons... go figure!
     So that's the latest!  We are asking for prayer that Zion will respond beautifully to this first line of treatment and be completely healed! The information that I have read says that Acute ITP is curable in 80-90% of children diagnosed as early as Zion.  Praise God!  Please pray our little man falls right smack dab in the middle of that percentage!  Please also pray that he does not suffer any of the unfortunate side effects of these steroids.  We would also pray for protection from injury and infection and especially that our family remains healthy during this entire process.  One of those "unfortunate side effects" is that they are more prone to illness while on the Prednisone.
    Lastly, I want to again thank everyone for your outpouring of love, support and prayer.  Your comments are just so uplifting and have encouraged us tremendously.  We love you all and will continue to keep you posted as we navigate these "uncharted waters."
Zi Zi....always into somethin!

Wednesday, February 9, 2011

What a day!

     Today started out just like any other day.  I woke up spent my time with the Lord, walked with a friend and then came home to start the morning routine.  Today was my work day and so the morning seemed a little rushed as usual.  Zion woke up late so I didn't get my usual morning snuggle time in.  I am so grateful God allowed me a quick minute to grab up my son and cuddle him before I got ready for my day.  Still in his footies I looked down and saw some tiny pinhead sized purple spots on his right hand and lower arm.  Of course my nursing skills kicked directly in and I stripped him down to his diaper and began examining ever nook and cranny of his little naked body.  More little purple spots began popping up here and there.  With each small dot my anxiety level rose.  I am a bit of a paranoid mother and couple that with being a nurse that is exposed now to all kinds of pediatric illness and cancer and you get a recipe for disaster.  The scales tipped when he was eating breakfast and I noticed little black spots on his tongue. 
     I immediately reached for the phone and contacted the advice nurse.  I was placed on hold for a ten minute period that felt like an eternity.  There were no appointments available so I insisted the advice nurse have a Dr. Call me for a telephone consult.  She assured me that a Dr. would call me within a four hour period.  I could tell by the tone in her voice based on my description of his symptoms the concern was mutual.  
     Knowing that I needed to go to work due to my lack of sick time I put on my best poker face and went in.  On my way into work I called my prayer warriors and alerted them and asked them to spread the word. Within 15 minutes of being at work Jeremy called to tell me that the Dr. had called and wanted us to bring Zion in as soon as possible.  Confirmation once again that my mothers heart and nursing experience was speaking very loudly that this was not something to be taken lightly.  
     We arrived at the clinic and were taken back to meet the Dr. who examined Zion very thoroughly and immediately explained to us that he would be ordering STAT blood work to determine what was happening to our son.  The next few sentences that spilled from his mouth rocked Jeremy and I to our very core.  He said that based on Zion's symptoms we could be looking at one of two things...  the first being something called ITP: idiopathic thrombocytopenic purpura, a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting.  This he explained would be the best of the two scenarios due to the fact that the alternative was the possibility of Zion having Leukemia.  He explained if Zion was diagnosed with ITP it may require steroid treatment and blood transfusions but it was definitely the diagnosis we wanted to hear.  We were then instructed to go to the lab, get some lunch and return to the clinic to review his test results in person.  Ok I am a nurse but even the layperson knows reviewing labs in person  means he is expecting those labs to be abnormal and possibly bad news.  We left the clinic in absolute shock and entered a three hour period of time in our life that was the most fear filled, life flash before your eyes, sad, confusing, overwhelming, "what if"thinking, absolutely HORRIBLE time of our lives.
     The lab experience was horrid and it took two sticks and two different techs to finally get his specimen.  He was not afraid to let the whole world know that this sucked and he was not ok with what they were doing to him.  Poor little guy, already having bruising issues was left with a couple of nasty additional "war wounds" after all was said and done.
     We left the lab drove home, fed Zion and changed him out of his goofy Christmas footies, Daddy had to bring him to the clinic in, in such a rush.  As we sat at the table and talked Jeremy spoke of a thought that had been haunting him all day.  Yesterday, he signed up to participate and organized a team from the shop to shave their heads to support childhood cancer research through Saint Baldricks this coming March.  Yes, you will be hearing more about this in upcoming emails.  And, yes, Jeremy is going to shave off all of those lovely locks that I am so madly in love with.  We were just humbled by the irony of this and what we were now facing the possibility of.  Talk about hitting close to home.  I admitted, I too was having the same thoughts running through my head.  The rest of the time we cried, hugged, prayed and then set out on the journey back across town to meet with the Dr. to hear Zion's lab results.  During this drive I prayed probably harder than I have ever prayed in my entire life. Except of course when I prayed for him to survive through my pregnancy.  Boy this little boy has given my knees a real run for their money in his very short little life so far.  Anyhow, I pleaded with God "please spare my son from Cancer.  Please God I beg you!!! But God, if you can't then please give us the courage and strength to face whatever journey you will place before us."
     We are so grateful that the first words out of the Dr.'s mouth were..."Well he doesn't have Leukemia!"  The next words..."but he does have ITP."  This, as I have said to many of you..."Was the best, "shitty" news I have heard in my entire life!"  Praise God!!!  We do have some uncharted waters to face and more than likely a lot more horrid lab experiences (sometimes twice a week apparently).  However, we will take this over the alternative anytime!!  Tomorrow we will meet with a Hematologist and gain more understanding of where we go from here.  We do know he has a "VERY LOW" platelet count (which helps with blood clotting) and this is not the best combination for a one year old BOY that is learning to walk.  Yikes!  Please pray for safety and protection from injury as we try to protect our little dare devil from hurting himself! 
     We left the office and it was as if someone pushed the decompress button.  As unknown as our future looks concerning this we felt such a relief after his diagnosis.  I am so humbled by the fact that parents all over the world, on a daily basis face what we did not have to today.  They enter a Dr.'s office and hear that their beautiful child has Cancer.  They have prayed just as hard as we have and for whatever reason they got a different answer. I am overwhelmed and have a brand new perspective on those that walk through this "valley of the shadow of death."  I am just once again, simply overwhelmed by this.
     Throughout this entire experience we were receiving texts, phone calls, voicemails and Facebook posts from all of you who knew what was going on.  I can honestly say, as afraid as we were your prayers and love were felt so profoundly by the both of us.  I told my friend and Pastor that I have no idea how people get through these type of life moments and not have the support of friends, family and The Body of Christ to be praying and lifting them up.  It is the most beautiful and comforting thing to know that you are not in the trenches alone.  Thank you to everyone who has been lifting us up in prayer and sending love our way.  We ask that you continue to hold our family & specifically "Our little warrior" up as we enter this next phase of this journey.  We promise to keep you posted along the way.  Goodnight, for now..this mama needs some sleep..ZZZZ
Our little warrior taking a "swipe" at his not so happy big sister:)
Zion and Roxy playing in the sand just three days ago.  
Our family in Bodega on Monday!