Searching for Answers

Pictures of Rachel before she was sick...

Rachel continues to be sick. The skin on her arm is healing in some parts - other parts of the arm continue to be open sores. This causes a problem if the sores get caught on something or rub on her sheets wrong. They have opened up and bled more than once.

This week she has been very sick. The anti-viral medication makes her ill. The doctors have increased her anti-nausea medication to their highest possible dosing. This has helped some.
She went in again this week - and has strep again. They are quite concerned because the strep that she has is not your normal group A or B strep. It is a very very rare form of strep. She is in a lot of pain with her throat.

The doctor contacted the infection disease clinic requesting for them to see Rachel. After reviewing her records and having a conference call with her two doctors here, Infectious disease doctor's felt that her care needs to be handled by an immune deficiency group. Those doctors were contacted. After they reviewed her case, they feel that we are looking at there being something wrong with her blood. More specifically, the T-cell part of her blood cells. The T-cells are the part of the blood cells that fight viral infections.

There is one particular disorder that is extremely rare but shows itself after a case of mononucleosis. After the body gets sick with the mono, the blood cells do not fight off viral infections. (I am trying to write this - the best way I understand it .. I hope I am saying this all correctly!) :) They are running blood work and tests and looking into this as one of the possibilities of something that could be causing her to be so sick.
She has an appointment with the immune deficiency clinic at Children's hospital next Wed. She will meet with the oncology specialist of the clinic at that time. I have done my fare share of googling and researching the t-cell deficiencies. It is 'over my head' , so to speak; but understandable enough to know that none of these issues are fun/good issues with which to be dealing.

We covet your prayers! I will be spending the week trying to not go crazy wondering about it all. I plan on being proactive in getting things around the house in order and organized - that if I have to stay with Rachel for a hospital stay - things here will run smoothly for a short time. If Rachel gets sick with anything else before Wed, I am pretty sure we will end up at Children's early.

Thanks for all your prayers, gracious emails and kind notes and cards. They mean so much to us at this time. I will keep posted as I find out information.


Susan said...

Praying for your sweet girl and you! I keep trying to think of things to say, but the only thing that makes any sense or offers any comfort is that I'm praying - for the doctors, for peace for you as you wait this week, for relief from pain for your girl, for wisdom to know which way to turn, for peace for the rest of your children as they see their sister so sick . . . so many things come to mind as I try to put myself into your shoes. That's all - just I'm praying.

Jackie Koll said...

Thank you for the update. I will pray that the doctors will find an answer and a solution.

Anonymous said...

Praying for Rachel and for you and Rob. We love you and pray that this year will be one of healing. John and Eleanor

Linda G. said...

I'm so sad to hear that Rachel is still sick! I thought she was better. We will keep her and your family in our prayers.