My sister Mandy and stem cell donor arrived Sunday. They will collect her stem cells next Monday and maybe Tuesday. The night before Mandy arrived Nate and I stayed up late talking. It was one of those conversations that i didn't want to finish. We talked about this disease and how it has changed us and how we want to be better. We talked about how grateful we are to have each other. We talked about how grateful we are that Mandy is a match and stem cell donor.
Mandy is so great. When she arrived on Sunday she gave me a bracelet that says 'I love my sis'. She has one that she wears too. She wanted to have t-shirts made that say, 'Blood Sisters'. She is so excited to be here and to be able to help. When Nate and I talk and think about it, we are so grateful for her... for saving my life and just being the way she is. She IS saving my life. The genetics of my Leukemia are aggressive. The doc said that after 5 years without a transplant the survival rate is 20%. Chemo alone wont do the trick. I need a transplant. I am lucky my sister is the match and that she is so excited and willing to be here for this. She has never been away from her children for more than 3-4 days at a time... and it has been a long time since she has been away at all. She will be here for 10 days.
Not only are we excited to have Mandy here, but this week is the week of birthdays. Little N turned 1 yesterday. I am so happy that I was home for his birthday. So happy... and that I felt good enough to make his cake. We hung streamers and balloons and wrapped the table in sesame street wrapping paper... all Mandy's ideas. I think Little N was a little tired and sad after burning his hand on the cake candle... but once he stopped crying, he seemed intrigued by his cake. He dug into it slowly. There were at least 3 cameras in his face the whole time. That alone probably weirded him out... but he did like the cake and frosting. After eating cake Nate and I bathed the boy and helped him open his presents. He loved all of them. He had so much fun playing with his new toys. I think it was a fun party... one he wont remember, but we will. The ten million photos won't let any of us forget it. I will include a few.
Tomorrow is Halloween. Im excited to dress little N in his cowboy outfit and me in my monk costume. We live in a cute neighborhood, so I think we will actually get trick-or-treaters this year. We are going to take Little N t-o-treating... and he will get candy that he will never eat... unless my dad sneaks it to him, which he might.
My treatment plan has changed a bit. If you care about dates and details I will share them with you now. My counts are still really low. Too low for me to start chemo next Tuesday as planned. I will have to wait until my counts are up for the last round of chemo. It may be November 18th before I start my last round of consolidation chemo. I have learned that the more chemo you receive, the longer it takes for the counts to recover. I have never had trouble with chemo, but infections have really floored me... as you probably know. Since I haven't had trouble with chemo, I guess I don't realize that they have taken a toll on my body... and my counts are taking their time recovering. Meaning my immune system is still nothing and it has to be built up a little to handle more chemo. I have to mention a little miracle... I did get a sore throat a week ago. I thought for sure I would end up in the hospital again. I didn't. I never got a fever. I am taking some really expensive antibiotics, so that probably helped... but I also am grateful for everyone's prayers. My mom got so sick she was in bed for 3 days... Little N was sick with a fever and big Nate was sick too... but me, the one without an immune system... I didn't get sick. It is a tender mercy/ miracle.
So, it will be great to be home for a few more weeks before having to spend a month or so in the hospital for chemo and after the transplant. I also want to move on. The longer it takes to go to transplant, the longer Leukemia will be a constant shadow that affects everything in our lives. So... be gone Leukemia. I'm tired of you.



He's so adorable! Sad about his candle, though! I'm so happy for your little miracle. That truly is a tender mercy. One you deserve! We love you!
ReplyDeleteThanks Dani! It was sad that he touched the candle... but we are idiots... of course a 1 year old is going to reach for the candle. We should have been paying more attention to the boy and less to our cameras. We will be wiser next year. :)
DeleteI'm thrilled that you are surrounded by so much love and that you were able to be home for the things that were really important. Keeping you in our prayers every day Friend!
ReplyDeleteThank you Casey. I am thrilled too. This would have been a really really sad week to be in the hospital. As it is I will be there for Thanksgiving... but I'd rather be here this week than that one... if I had to choose. For a while I thought we would be celebrating Nathan's 1st birthday in the hospital... talk about depressing... anyways... things have worked out. Thank you for your prayers!
DeleteI care about dates and details!!! I check often here to see what's new. I'm glad that things have continued to go well and you have been staying healthy! Tender mercies and miracles for sure! We are grateful! Ok....so....this may be a really dumb question...but is the transplant AFTER the consolidation treatment so it too has been postponed until after the 18th? i was a little confused on that one. And if so---Mandy's stem cells can just "hang out" in the fridge until you are ready to receive them :) Just wanted to see if I'm understand it all right. Love you lots! Stay healthy!
ReplyDeleteHi Stef, Yes. I will receive Mandy's stem cells after 5 days of consolidation chemo. Im nervous about that chemo. I think it might be pretty harsh... but maybe no more than what I have already received... which has been pretty harsh... Ive been ok mostly, but the doc said he's not surprised at all that my counts are still low, because of the high dosage of chemo I have received. Ok... Im straying from your question. Yes, it is ok for Mandy's stem cells to hang out in the fridge until Im ready for them. Ideally I would receive them about the same time that she donates them, but its better that my body is ready... and it shouldn't make much of a difference. One of the possible side effects from Mandy's injections are pain in her bones... poor girl... after her second injection today her bones are achey. Anyways... you are understanding everything just right.
DeleteI'm so glad you've been able to enjoy some celebrations and that you have felt pretty good. I'm so glad you didn't get sick when everyone else did.
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