Wednesday, December 21, 2011

Mid Transplant Update - A Terrible Mistake

Dearest Friends,

We have not posted an update since the first few days of Theofanis' second Stem Cell Transplant because our full attention has been directed towards our son's health and well being. On Day -5 of the transplant, which was his third day of high dose chemotherapy, we discovered that the doctors and hospital made a terrible, horrible, inexcusable mistake. The unthinkable happened. Theofanis was being given an incorrect dosage of chemotherapy. He was being overdosed.

He was being given chemotherapy per the protocol for a Single Stem Cell Transplant. The protocol for a Tandem Stem Cell Transplant (which he should have been getting) utilizes the same drugs as in a single transplant, but at lower dosages for each of the three drugs. If you recall, Theofanis is the first child at Comer to undergo a Tandem Stem Cell Transplant as part of the current Neuroblastoma clinical trial. When we, not the doctors, discovered that he was being overdosed, Theofanis already received too much of the one drug, Melphalan. The other two drugs were adjusted on the last day so that he cumulatively received the proper dosage. When the doctors and hospital took full responsibility for this unbelievable mistake, we were scared, angry, dismayed, appalled, etc., etc., etc.

We will soon post all the details of how we discovered that this mistake happened, how they corrected some of it, the short and long-term effects on Theofanis, and what the doctors and hospital are doing to regain our trust.

But, the most important thing right now is Theofanis' recovery. Theofanis did receive his "super cells" back on day Zero (last Wednesday). Like before, the actual stem cell rescue went well. His body seemed to once again welcome them back with open arms. However, the side-effects of the chemotherapy started sooner:  his pain is much more intense; his mucositis continues to worsen and he cannot swallow nor eat; he is having bad side effects such as itching from the pain medicine he is on; he has had nearly daily platelet transfusions; his heart rate shot up (but now is under control and confirmed by the many EKGs he's taken); and he has a urinary tract infection which is unbearable for him. (This is Theofanis' first ever infection since he started treament.) They are still monitoring the virus he has, too. Theofanis feels and looks miserable. He says he's having a tougher time now than during the first. It breaks our hearts to watch our son go through this. We so desperately wish it was us instead of him. 

Theofanis is right, this is more difficult than the first transplant. And, there is still no sign of his counts recovering. And the hope we had that Theofanis will be able to celebrate Christmas and his birthday with his mom, dad and sisters is slowly starting to fade.

But, we must and will continue to believe in miracles. And from the very begining our hearts told us that "With Love, Faith and Prayer He Will Win!" So, we ask that you all pray with us (and we know that you all pray for Theofanis every day) that his white blood cells and neutrophils suddenly appear during his next blood test and then sky-rocket from there.

And please pray with us that the mistake the doctors made will one day prove to be what cures him of his cancer. Because  WHY, WHY, WHY on the third day of chemo did Eleni feel that something was not right when nothing was different than the previous two days? What came over her to say, "Stop, something feels wrong." So, please God, our almighty and just God, please let it have been you, placing your hand upon us and telling us that Theofanis got the medicine he needed, and not one drop more.

With all our humble love and gratitude for your prayers,
Eleni and Kosta

4 comments:

  1. I have anxiously anticipated this update. May your prayers be answered, Eleni. As always, you all are in our prayers, especially for peace during this blessed seasons of the Nativity, when God's grace for us in our brokenness is so clearly manifest. Please hug Theofanis for us, give him a "high five" and tell him we will see him "next year"! With Love, The Milaks (Toni and Steve, Niko, Stefanie and Anthony)

    ReplyDelete
  2. There is no doubt that this is a horrible event. You have every right to be mad, upset, etc. This is not a mistake someone made over something like a water filter. Its a little boy and YOUR little boy.

    I know Theo is suffering and I do not want to minimize that, but I can feel that he will get through this. Life is riddled with mistakes and things that do not go our way, but this does not mean that it is going to be bad in the end.

    I am not a prophet, psychic, or anything like that, but I have to tell that my gut is telling me that Theo is going to be OK. There were times I did not have that feeling in the past. But Theo's demonstrated history of "fight" leads me to this feeling. I hope some of my "feeling" transfers to you.

    Andrea was in tears on this post and I am sure many others are as well. We will continue to pray and pray extra hard for this situation to resolve quickly.

    I know and I know that you know that the staff made a mistake but it was not intentional. I know they must feel horrible right now over all of this. I ask that we all pray for skills of the staff to really start shining through. I pray that we can try to focus on the extra and superb care that you and Theo deserve that may be going on because of this. I hope this incident has caused Theo to get even better care.

    All our love,

    Frederick Chang & Family

    ReplyDelete
  3. We are terribly disturbed and saddened to hear about this recent incident. We hope and pray that the effects of this mistake are very minimal to little Theofanis.

    Eleni and Kosta, you are AMAZING parents and Theo WILL win by having both of you and God by his side fighting this battle and watching over him!

    We will pray that God continue to give your entire family the strength to travel down this long and difficult road. We will also ask that the bright star of Bethlehem grant Theofanis a Christmas miracle this holiest of seasons.

    All our love,
    Joanne, George, Conner and Stefanie

    ReplyDelete
  4. I do believe as a mother you always know your child best over anyone in this world, including Doctors. Hang in there things will get better for little Theofanis. All my love and comfort to your family!!

    ReplyDelete