FOLLOW BY EMAIL...

Wednesday, May 16, 2012

Happy New Birthday Andrew!


Happy Birthday to Our Boy! Reborn 
May 16th at 1:35pm at
Children's Memorial Hospital!
Andrew's Room for at least a month.
Isolation.
Childlife Services decorated the room in Whitesox and other favorite teams of Andrew.
The "tree" that is keeping Andrew going!

Quirky Nurse Margaret who brought the bag of
stem cells in and administered them!
Stem cell (Bone Marrow)!

Andrew with his marrow, giving him a chance to live.
Getting ready for the infusion.  Notice
Andrew playing his DS, what a cool customer;-)

Drip, drip, drip!  The infusion starts!

We are so looking forward to seeing NMDP donor id:
0336-6409-2 in a year to thank her for saving Andrew's life!

Thank you for all your prayers and thoughts!  The stem cells arrived this morning at 5am via courier and was sent directly to Northwestern Hospital for processing and sent back late morning to Children's for the transplant that took place at 1:35PM.  There was a whole list of things to do before he actually got his new bone marrow.  Pre medication was the main thing.   As you can see in the picture, the bone marrow looks like a bag of blood or tomato puree.  We were fortunate enough the donor was able to give the amount she did, considering she is a woman.  This was advantageous for Andrew, considering he is bigger than an average adult.   Also, Andrew's donor's blood type is A+, same as Andrew's, so he won't be changing his blood type.  The actual infusion was only 30 minutes or so.  That's it and voila, Andrew has new marrow.  

It will take at least a few weeks for the marrow to graph and then we will see how severe or to what extent he will get GVHD (graft versus host disease).  GVHD is basically Andrew's body trying to reject the bone marrow.  It is good to get some gvhd, considering it is indicative of the bone marrow trying to graph.   Again, Andrew will be at Children's for atleast a month in isolation, longer depending on the Gvhd.   I ask you all pray for the GVHD would be minimum!  Andrew continues to do relatively well considering he had 7 days of high intensity radiation and chemo.  He sleeps a great deal, but that is due to the body being beaten up by the chemo/radiation and the pain meds he is getting for all the body aches and pain.  The doctors are surprised he is doing as well as he is now.  He has not gotten the dreaded mouth sores we were told of that could manifest because of the radiation.  I am praying the experimental drug called Palifermin, which is $7000 dollars a vial, is doing it's job of keep the mouth sores at bay and if they occur, shortening the length and severity of the sores.

Yesterday, Tuesday the 15th was very emotional for me as we moved into isolation. The very act of going down two doors to our new room triggered many emotions.  On one hand I was hopeful and excited and on the other, I was pensive and scared to the point of tears.  I shared this with some of the nurses and they were so supportive.  Courtney, one of the nurses, even asked if I needed and a hug and humbly nodded.  The care givers on the fourth floor at Children's, the hem oncology ward, affectionately called 4 west are amazing and we could not go through this journey without, not only their professional skills, but their care emotionally!  The floor becomes family, especially meeting the parents of the sick children.  

With that being said, I have grown rather close with two families the past 5 months.  One being Anna's parents, Sean and Lisa Daley and most of you know Anna went home to be with the Lord last Tuesday, after a long battle post transplant with severe GVHd.  I just  found out yesterday Deona William's son Ernest, whom we roomed with many times, past away suddenly Monday.  I had just seen Ernest and Deona last Friday when they were here for out patient chemo!  The two families I got to know, lost their children!  Both only children.
God gave me both families to help me get through the tough times and for them to lean on me as well.  I know Anna and Ernest are in perfect joy in the audience of Jesus.  They will be missed and their legacy of courage and love will carry on forever.  Rest In Peace.

Thank you all for the prayers and love!!!  We are "hunkering down" for the long haul and praying for engraphment soon!  Keep on praying for Andrew and our family.  Bless you!

Love,
Joe

4 comments:

  1. Happy New Birthday, Andrew! It was terrific reading today's post. What a great week! We think of you daily and we'll continue to pray that the GVHD is minimal. Andrew, you are so strong!

    Love,
    The Peña Family (Ric, Kimberly, Victoria and Grace)

    ReplyDelete
  2. Hi there. Just wanted to send my wishes for continued blessings and my heartfelt support. I work in the main office at HMS and have had some contact with your family -- I know Emily graduates this year! I am soooo proud of Andrew! Please know that I will be a small but sincere addition to the many prayers and loving thoughts that surround you throughout this ordeal. You are an amazing family.

    Gail Vescovi, secretary HMS

    ReplyDelete
  3. Happy "Day +1" Andrew...wishing you about 30,000 more of them (that makes you about 100 years old)! Thank you Joe for sharing your very important day. I remember that day very well...but in our case donor and recipient were in the same room...quiet and thoughtful as the transfusion took place. Now it's the waiting game. I hope for a speedy and uneventful journey to the magical "day 100" for you both!

    ReplyDelete
  4. Happy Day! WOW!! I am sending humble prayers to Andrew and your family, that all runs as planned. The waiting game is hard, but with the faith in God, it makes it easier...if there is anything that I can do, please let me know!!!

    ReplyDelete