This is the third time my son is fighting for his life. The first time was when he was diagnosed at 5 years old with acute lymphoblastic leukemia (ALL). He only did two months of chemotherapy but it didn’t work (this is called refractory leukemia). We had his older brother tested to see if he was a match for a bone marrow transplant and fortunately he was a perfect match. After four years and seven months, he relapsed. The search for an unrelated match was an uphill battle (him being biracial). Usually your donor should be the same ethnicity as you. But by God’s grace, we found one all the way from Germany. She is full blooded German though which is interesting. Her stem cells were infused on September 2, 2015. Three years and eight months later, he relapsed again. That was just two weeks ago (May 6, 2019).
Cancer, we will beat you again. And thank goodness for science, we have a plan to kill you for good.
I’m angry and bitter but I can’t keep feeling this way. I need to be strong for my son. I need to fight for him. And cancer can go fuck off!
Hi, My name is Cindy. I work at http://www.patientpower.info. I was searching the internet for individuals to share their experiences with ALL and landed on your blog post. My heart is broken reading about your son’s ongoing battle with ALL. I can not imagine the pain and heart ache. I am not a doctor and I am sure your already checked out all your options, but I wanted to mention that I know others who have had great success with CAR-T Cell therapy. Best always, Cindy Email- cindy@patientpower.info
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Hi Cindy! Thank you! Yes we are going to do CAR T and are just waiting for insurance to approve. Please send us all your most positive thoughts. My son wrote more extensively about our experience with cancer. http://kuyasnotebook.com
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I am sending you positive thoughts and wishes that the insurance approval comes quickly. I will check out your son’s blog. If at any time you or your son would like to share your experiences please reach out to me. Patient Power is always looking for authentic patient voices. Best always, Cindy.
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Yes will do! Thanks a lot
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How awful that your poor son and you have to go through this again. I hardly know what to say except that I love your blog post title.
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There’s never anything that people can say to make me feel better. So I understand. But thank you, I hate cancer and it can totally F* off!
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…So I come to catch up and there it is… Sorry you’re back to the fight again Bootsy. Not meaning to trivialize your battle in any way but I happen to be watching this the other day, you might find it interesting, not as an alternative but as a ‘maybe there are things I can take from this.’ Plus I’m sure you’ve research big time already, but maybe one more thing won’t hurt. Particularly where the discussions about food are concerned. I haven’t watched it all the way to the end yet, I’m about half way through.
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Thank you Miss Ed. I’ve been very busy lately, especially my son was at the hospital for five days due to fever. He’s back there tonight for blood transfusion. Anyway, when I get the chance I will watch this video.
I hope you are doing well and please blog more!!
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Oh dear. Poor thing. And as for you, you throw as many pity parties as you want. x
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Hang in their Mama. Channel that anger in to being there for your son and killing that cruel thing! You can do this. You can both do this. You have done it before and you will get rid of it for good this time. I am sending your some Mama Bear energy from Nor Cal with some sunshine for peace and some hugs for…well just hugs because I cannot imagine any mother going through this one, twice, or three times and it makes me teary eyes just thinking about it.
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Thank you! I try to keep a positive mind but there are times when I throw pity parties. But this is the life I’ve been given and this is the life I’m going to fight for.
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I think I would be exactly the same. Seems normal to me. Hang in there girl.
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Boots,
I’m very sorry to hear the news about your son. Just know that my prayers are with him, with you, and with your family.
Larry
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Thank you Larry! Please keep us in your thoughts and especially in your prayers
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I’m so sorry for what you’re going through and what your sweet boy is going through. My mom was just given a status of remission and I’m praying for your family that your son gets to hear those words soon too! Fuck cancer
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I’m so happy for your mom! Thank you so much for the prayers. And yes, fuck cancer. It has given my family so much grief! Hugs
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Boots, Stay strong and keep up the fight. You will win. Louise x
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Thank you Louise!
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I am with you 100%.
F*ck cancer!
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Yeah f*ck cancer!
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Praying for you and your son. F*ck cancer!
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Thank you. And you continue to be an inspiration!
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