Really tough day
Today came at us from out of nowhere. I had an early morning doctor appointment and when I came home, Shelbie was up and announced that she had lots of petichae. Petichae is basically broken blood vessels, in Shelbie's case, happens when her platelets are low or dropping. I wasn't alarmed or even really that concerned but thought with the holiday week, we should at least get a CBC just to be sure she wasn't in any danger. We went with the boys to shovel the driveway of a widow and then drove over to the oncologist's office. We have had a huge storm in the area for a few days now and we arrived just as they were closing down. Most of their patients cancelled and they wanted to get the staff home before things got worse. I told them it would just be a quick CBC and didn't even need to see the doctor since I can pretty much decipher what all the counts mean.
We all sat in the waiting room placing bets on what her platelet count would be. The winner had to buy lunch. The guesses ranged from 115,000, 105,000 and 80,000. Sam didn't want to play, I guess he was afraid he would win! When they realized I said the winner had to buy lunch, Shelbie changed her guess to 2000. Well, she was the winner. What was suppose to be just a 10 min stop in the day, became a couple of hours of information overload. Thankfully, we caught the doctor before he left for the day and we were able to conference call with Dr. Shimamura in Seattle.
This is where we were three years ago. Her counts were rock bottom; as they are today. She ended up having chemotherapy for months. Chemo is not an option this time. After a lengthy discussion on what was causing the counts to crash, we all agreed that a platelet transfusion is what we will do. That however, is not as easy as it sounds.
She can only receive irradiated platelets. Because she is a candidate for transplant, they have to remove any 'accidental' cells that get into the platelets from the donor. They aren't a big deal for you and I, but can cause a lot of problems for an individual with Bone Marrow Failure Syndrome. Not only that, instead of just taking any old pint of platelets from the bank which could be made up from many donors, they have to choose platelets that have come from only one source. This means, that they need to find a donor who goes faithfully and regularly to give blood. That sounds hard to me but apparently it is not as hard as it seems. If they don't take these precautions and measures, then she could develop a secondary problem called Myelofibrosis. (I think I have the terminology right...don't quote me exactly though. I will find out for sure tomorrow) Essentially, this is when the bone marrow begins forming a spider web of scar tissue that could impede any chance of a successful transplant down the road, should one be needed.
I am very grateful to these two great doctors who worked so well together and involved Shelbie and I in the decision making process. It helped Shelbie feel a little more empowered. Tomorrow morning, bright and early, Shelbie will receive a 'six-pack' of platelets at the hospital. Throughout the day, they will check her blood and track what is happening to her new blood. If the counts stay up all day, then the doctors will know that her drop in counts is caused from bone marrow failure. If by the evening, her counts have crashed again, then they know she has an autoimmune disease called Immune Thrombocytopenia or ITP. I am glad that we are finally settling this debate once and for all. Our Oncologist here believes that this is a case of ITP, I have always believed it is a case of bone marrow failure and have respectfully disagreed. He knows I don't entirely agree and we have a good relationship about it still so that is good. Neither one is something we want to have to deal with but at least knowing will allow the doctors to choose the right treatment for her instead of guessing.
As you can imagine, this has been a really hard day to navigate. I try to be positive and happy around the kids but tonight Shelbie said, "I'm sorry I am so upset. Obviously this is no big deal, you don't even seemed bothered by it." I explained to her that I can't just allow myself to fall apart or I would never put the pieces back together. As soon I open the flood gate of sorrow and tears, it's anybody's guess if I will ever be able to turn it off. I especially can't do that in front of my kids. I am their anchor, their rock. I have to present a strong front of hope and faith so that they have something to buoy them up. I have all night, to let the tears escape and they are none the wiser that I spent the whole night trying to stitch my heart back together.
Even though this has been a tough week, I still feel we have so much abundance, so much to be thankful for. God is good to us!
We all sat in the waiting room placing bets on what her platelet count would be. The winner had to buy lunch. The guesses ranged from 115,000, 105,000 and 80,000. Sam didn't want to play, I guess he was afraid he would win! When they realized I said the winner had to buy lunch, Shelbie changed her guess to 2000. Well, she was the winner. What was suppose to be just a 10 min stop in the day, became a couple of hours of information overload. Thankfully, we caught the doctor before he left for the day and we were able to conference call with Dr. Shimamura in Seattle.
This is where we were three years ago. Her counts were rock bottom; as they are today. She ended up having chemotherapy for months. Chemo is not an option this time. After a lengthy discussion on what was causing the counts to crash, we all agreed that a platelet transfusion is what we will do. That however, is not as easy as it sounds.
She can only receive irradiated platelets. Because she is a candidate for transplant, they have to remove any 'accidental' cells that get into the platelets from the donor. They aren't a big deal for you and I, but can cause a lot of problems for an individual with Bone Marrow Failure Syndrome. Not only that, instead of just taking any old pint of platelets from the bank which could be made up from many donors, they have to choose platelets that have come from only one source. This means, that they need to find a donor who goes faithfully and regularly to give blood. That sounds hard to me but apparently it is not as hard as it seems. If they don't take these precautions and measures, then she could develop a secondary problem called Myelofibrosis. (I think I have the terminology right...don't quote me exactly though. I will find out for sure tomorrow) Essentially, this is when the bone marrow begins forming a spider web of scar tissue that could impede any chance of a successful transplant down the road, should one be needed.
I am very grateful to these two great doctors who worked so well together and involved Shelbie and I in the decision making process. It helped Shelbie feel a little more empowered. Tomorrow morning, bright and early, Shelbie will receive a 'six-pack' of platelets at the hospital. Throughout the day, they will check her blood and track what is happening to her new blood. If the counts stay up all day, then the doctors will know that her drop in counts is caused from bone marrow failure. If by the evening, her counts have crashed again, then they know she has an autoimmune disease called Immune Thrombocytopenia or ITP. I am glad that we are finally settling this debate once and for all. Our Oncologist here believes that this is a case of ITP, I have always believed it is a case of bone marrow failure and have respectfully disagreed. He knows I don't entirely agree and we have a good relationship about it still so that is good. Neither one is something we want to have to deal with but at least knowing will allow the doctors to choose the right treatment for her instead of guessing.
As you can imagine, this has been a really hard day to navigate. I try to be positive and happy around the kids but tonight Shelbie said, "I'm sorry I am so upset. Obviously this is no big deal, you don't even seemed bothered by it." I explained to her that I can't just allow myself to fall apart or I would never put the pieces back together. As soon I open the flood gate of sorrow and tears, it's anybody's guess if I will ever be able to turn it off. I especially can't do that in front of my kids. I am their anchor, their rock. I have to present a strong front of hope and faith so that they have something to buoy them up. I have all night, to let the tears escape and they are none the wiser that I spent the whole night trying to stitch my heart back together.
Even though this has been a tough week, I still feel we have so much abundance, so much to be thankful for. God is good to us!
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