Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
In all circumstance praise God, call on God, cry to God, devote your life to living as His child no matter if you are happy with the plans He has for you or not. Most importantly trust God. God knows the path of your life. We can live with confusion and low understanding, but need to put our hope and trust in him alone. I pray he will give insight to the doctors that are working with me. I trust that His will be done and He will guide the doctors. I pray that He will grant me peace in my heart because what I am feeling write now is far from peace. I am scared. Here is a run down on the appointment yesterday…
Throughout this journey I have tried to be very optimistic. I trust God. I trust His ways to be good no matter what. I went into yesterdays appointment feeling very confident that the news was going to be good. There were many things said that had me believing that a good match had been found. A match had been found. 1 person. A 10 out of 10. The problem was that when further testing was done my antibodies rejected it. I have antibodies that have been built inside of me when I got pregnant with all my babies. So my body goes on defense mode and rejection happens. So the risk is too high to give me these donor cells. What you need to understand is that once my body is prepped for transplant, donor cells HAVE to be put back in me. If my body rejects them, with only 1 donor available and no other cells, I die. 100%
So at this point they are now actively trying to find me a cord donor. So thats umbilical cord stem cells and I think some comes from the mothers placenta at the time. There has never been blood taken from the baby and no cells will be taken from the baby. Right now this is my best chance of survival. Because cord blood is not a lot, 2 donors need to be found. With cord transplants there are a lot more things to deal with. The pre treatment before the transplant is quite intense. I will be getting 2 different chemo drugs that I haven’t had before. With these drugs your symptoms are heightened excessively. So all the normal chemo drug effects are a whole lot worse. On top of that I will need high radiation. I believe it is total body but not 100% sure. Part of the problems that come with this is large sores in your mouth and throat and swelling. I would be equipped with a pain pump I was told. I am not sure how I will eat but I have seen people who have gone through similar things have feeding tubes. Aside from this recovery with cord blood it’s also a lot trickier. When you get stem cells from an adult donor you are getting a bit of immunity because of them having gone through childhood illnesses and such. With a baby there is no immunity yet. So my body will be starting from scratch. This means that I will be closely watched for years. Recovery is a lot longer. So to say I am scared is an understatement.
What happens if a cord match is not found? At this point they will be testing the 4 kids and my parents. They are all a half match but the chance of rejection from these antibodies is very high. They are not going to start testing until the possibility of a cord donor is looking slim.
Unfortunately these are my only options and they will only work if the matching works. They will only be doing 1 more round of consolidation chemo and them will stop. There will be no more treatment unless they do a transplant. I start this chemo after the May long weekend. This was the hardest pill to swallow. I have basically been given a 60% chance of survival. It is not enough to make me feel good.
Yesterday was emotional. I literally cried all day on and off until 1 am and then finally took something to calm me down. The things that go through your mind when you are in a situation like this is unreal. For some reason I seem to be looking at the 40% and thinking this is it. I see my kids and cry. I sat by their sleeping beds last night and cried. I picture graduations and girlfriends and boyfriends and picture mothers days and graduations, weddings. It is like I am mourning what I would be leaving behind and the pain is unbearable. Like nothing I have ever experienced or want anyone to ever experience. Words can’t describe it. Maybe I need to go through this to get to that place of peace. I will continue to put my hope and trust in God. Whatever His will is. His will be done.
What can you do? I get asked this a lot. Please pray for my kids and Aaron. Send them a personalized card. Be there for them if they need someone. They are going through similar emotions as me.
Pray that a cord donor is found and that God will grant me the gift of time. I need more time.
Thank you for those who have prayed and continue to pray and support us. We need it.
We are thankful that we have been given the gift of family time together. We will be going away for the long weekend. I am happy we get to do this after such a tough 4 months. I also get to take 5 13 year old girls to the Mercy Me concert tomorrow. Hopefully they wont be embarrassed by the blubbering mom. Christian music hits my heart.