The Family

The Family

Thursday, October 18, 2012

What A Crazy Two Weeks!

I will have to keep this post short, because with all that is going on I honestly have not had much time for blogging as of late.  To say that the past two weeks have been crazy is an understatement.  There has been SO much that has happened, both good and bad, and we are exhausted.  :)

I will start off with the most major event-- October 6th of this month we were to attend the Buddy Walk in Charlotte as we do each year, and help out at the Reece's Rainbow table.  While we were getting ready to go, I noticed that Atticus's feet and hands had swollen up and attributed it immediately as an allergic reaction to an antibiotic I had just given him half an hour earlier for an ear infection.  So off to the ER we went, they gave him Benadryl and a steroid, but then did some lab work to check his blood.  The results came back as abnormal and their best guess was Leukemia. I was devastated!  I called Tim immediately, crying uncontrollably and somehow through the sobbing he heard the word "Cancer" and was like WHAT??





So he turned the car around and brought the kids back home, I went from the ER at that hospital by transport with Atticus to the Levine Children's Hospital which is well renowned for their cancer treatment.  We spend the next week on their hematology/oncology floor, had spinal taps, bone marrow biopsies, lots of issues with veins, needles, ports, reactions to blood products, spikes in fever, you name it. But in the end, he was diagnosed with Type B ALL Leukemia which is a very common and thankfully, treatable, kind in children.  Praising God for the small blessings!!

Atticus is now on chemotherapy and will be for the next three years.  Yes you read it right, THREE YEARS.  He will gradually step down from what is called induction all the way to maintenance therapy, provided that he responds to treatment well.  The success rates with this type of cancer are 85% to 90%, and we have a great team of doctors who really are on top of things.  So we are fully confident that this Leukemia will only be a small blip on the radar of Atticus's childhood.


Please continue to pray for our sweet boy.  Everyone's prayers have been so greatly appreciated!!  And all the calls, visits and meals have been too!  Our friends and family have been so kind to us and we are truly grateful!


So, on to miss Charlotte.  A few days prior to Atticus's diagnosis, we got one for her too.  One the neurologist had never even heard of!  Leave it to our Charlotte to be an original  :)

It turns out that she has a rare condition, so rare that only 41 people have been diagnosed with it since 1914.  It was discovered on her MRI and is called Rhombencephalosynapsis.  Read below....

"From an article published in 2009, "There have only been 50 cases of Rhombencephalosynapsis since the first known one in 1914. Until the use of the MRI in 1991, only a few cases were reported. Most doctors, including specialists, have never heard of this condition." 

This condition is when the two parts of the cerebellum which are in the back of the head and supposed to be separated into two hemispheres by what is called a vernis, are actually fused together with no vernis and therefore no separation.  There is nothing to be done about it at all, it just is what it is.

But, the good thing about finding out this diagnosis is that we FINALLY have some answers about our little girl!  This condition is what is responsible for her being so tiny, not gaining weight, having hydrocephalus, strabismus. lower set ears and ADD. This area of the brain also helps control all the signals the brain sends to its different parts, so coordination, balance, etc are all part of it too.  Hence the reason why she isn't walking yet either.  This will probably just take longer for her while her brain takes longer to communicate and make up for what that cerebellum is not communicating properly. So right now, yeah for a diagnosis!

Life will go on as usual for her right now though.  She is doing remarkably well in all areas having already pretty much mastered English in less than 5 mos, made tons of friends, started Bible class at school, preschool, therapy, etc.  She is one happy and smiley little girl and we are SO thankful to have her in our family!!!!!

So onto the other piece of BIG news we got during these last two weeks.  WE GOT A TRAVEL DATE!!! Yes, last Thursday we were informed our travel would be imminent, like in 9 days from when we got the call imminent.

We are soon on our way to bring home our two teenagers who have been anxiously waiting for our arrival!!  Some changes in our game plan had to be made of course considering our new situation with Atticus, but we have worked it all out enlisting some special care for him, as well as a caregiver for our other children while we are gone.  I will be leaving the majority of the travel to Tim this time so that I can come back and be at home to care for my baby.  I am very happy with the plan we have in place, and just anxious to get our two newest blessings home where they belong!!!!


Please pray for safe travel for us, for the health of Atticus and for all our children in our absence.  We are trusting in God and His provision as we move forward into this new phase of life dealing with a serious illness, bringing two new teens into the family, and maintaining all we have going on already.  I am up for it and so is Tim!  :)  Just pray for our strength and endurance and for peace in our family during this time.

Thank you again to everyone who has supported us as of late-- emotionally, financially with the adoption-- we really cannot thank you all enough!  Our auction was a success, our FSP on Reece's Rainbow has continued to grow, and people have been present for us in our daily lives helping us out and we are grateful.

If you feel lead to help, please continue to donate if you are able, as Tim's full time in EE will be completely unpaid.  That, childcare, me having to make two trips to EE instead of one, will eat up all the monies we currently have and then some.  We thank you for your help!  (the link to our FSP on RR is at the top right corner of this page!!)

Here is also a link to another blog from a woman who did such an incredibly sweet post on us and our situation.  Take a look if you like.....    http://doloski.blogspot.com/2012/10/nothing-to-give.html

Thank you everyone!!  Away we go!!!!!  



3 comments:

  1. Did the Rhombencephalosynapsis replace the FAS diagnosis?

    Thinking of you and your family!

    ReplyDelete
  2. Thanks so much for the update, Janice! I was heartbroken to read about Atticus' diagnosis on Yvonne and Jennifer's blog. We will continue to pray for him and all of you, esp as you travel. That's great to hear this type has such a high success rate. May the Lord grant His PEACE as you are so far away from your family. I also pray your adoption process will go VERY smoothly and quickly.

    God Bless You!

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  3. A friend's little boy has what your beautiful daughter was diagnosed with, if you're looking for resources.
    http://randomthoughtsfromthezoo.blogspot.com/
    Will keep all your sweet children in our prayers, Godspeed.

    ReplyDelete