PNH

Hello everyone, guess what… more news, and this was only 1 day after my last post but I have been so busy it’s hard to update as quickly as I should:) On Monday, we received a call from the LDS hospital that they had found something positive in Sarah’s blood. They did not want to explain over the phone so my family went to the hospital and met with the doctors. They explained that they found out what had caused the Aplastic Anemia, it’s called… Paroxysmal Nocturnal Hemoglobinuria or P.N.H. another rare disease. It's a deformity of the red blood cells. So Sarah has two rare diseases now… 3 out of 1 million get Aplastic Anemia, and 1 out of 1 million get pnh.


Finding out what caused the Aplastic Anemia has changed everything! They gave her a choice to kill the pnh off completely with a strong dose of chemo or to do a low dose of chemo. She chose the low dose, the reason for her choice is that if she were to choose the high dose she would become infertile… it has always been a dream of hers to have a baby girl named cloe. With the low dose she will still loose her long beautiful hair(we all cried on that one) she will still have pnh and will have to be tested every six months to see if the pnh has grown, if so then they would have to do the higher dose of chemo.


We think that she will be admitted into the hospital by May 1st but you never know when things are going to happen with these rare diseases so you can’t really plan. When they do admit her into the hospital they will start chemo. In my previous posts I stated that she had to use a wheelchair, which was because she was so weak. She is still weak but now she is able to walk in the house and hospital to get a little exercise so that once this is over she will still be able to function normally. She might even have some sort of exercise equipment in her room.

Another thing that has changed is the way they will do the transplant. They were going to hook up an IV to both of my arms and filter the bone marrow out of my blood, since they have found that she has pnh they will have to take more bone marrow. I will go into surgery where they will perform a procedure they call the “bone marrow harvest” I will be placed under general anesthesia, the skin over the iliac crest will be cleaned and prepared for the harvest ha ha! Then a needle will be inserted through the skin into the marrow of the iliac crest. The marrow is removed and then filtered to remove any bone particles or debris. There will be 2-4 external punctures on my back, but there will be approximately 200 punctures into the bone under my skin. The harvesting procedure is approximately 1 ½ hours.


We have been sad and happy, cried and laughed so many times throughout this whole experience, we have learned when going through something like this you have to embrace the stages and emotions as they come or you can’t move on and see what is really there… A beautiful strong spirit that is teaching all of us what is important in life. I see this world so differently now, I will never pass up an opportunity to help someone in need, I enjoy and appreciate everyday things more and more… I enjoy going to Wal-mart!!!;) … Sarah would love to go to Wal-mart:) but is unable to because she might get sick. It is amazing what we take for granted.