of gratitude and really bad luck

Wow, you guys. I am totally awestruck, blown away at the amount of support that is coming from this community for my little boy. I am seeing your names all over BG’s Facebook page, all over our Caring Bridge site–and in droves in my PayPal account. It is magical what is happening around our boy’s illness. People are coming together from every part of our lives to help him, and every time I open up my laptop, I sit here in tears at people’s generosity and love and compassion. I don’t know how to thank you. The words just aren’t enough to convey the gratitude I have.

As many of you know from other sources by now, BG has been officially diagnosed with a very rare form of leukemia that has been chalked up to nothing more than really bad genetic luck. We learned just a few days ago in a very scary sit-down meeting in a conference room with lots of doctors that he will need a bone marrow transplant if we are to beat this. The search for a donor will begin this week, and they expect it to take six to eight weeks, during which time he will be on chemotherapy. Chemo has already started. It’s mild, but it’s working to bring his white blood cell count down. Our nurses are amazing at helping find his comfort, so he has started some morphine a few times a day. We also happen to be at a university research hospital which houses the world’s leading expert on the type of leukemia our son has. We regularly meet with so many different teams of doctors. My favorite is our research guy who has personally broken down our son’s DNA. When I get to talk to him, I go into science geek mode a little more than freaked out mom mode, and it’s neat to think about. It’s profound the impact my son’s illness may have on future children with this disease. These cases come to this hospital once every 2-5 years. He literally had a one in a million chance of having this. One in a fucking million.

Some days are a little better, others are far worse. We’re having to learn who the new hospital BG is, who the leukemia patient BG is, and then who we are as moms of a child with cancer. It’s so fucking surreal, and I find myself drifting between going about my daily parenting duties and being utterly scared out of my mind at what is to come. Tomorrow, I face my first day at this alone as my wife goes to try and figure out how to sort of teach this fall. She has to or we lose BG’s insurance. We obviously can’t do that.

I’m just drifting here. Maybe I’ll find time to write something with more clarity tomorrow. I hope I will. I’ve got a lot I need to process here.

I never imagined this would become a cancer blog. Never in my wildest dreams. Yet I cannot imagine writing this anywhere else. Does that make sense?

 

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21 Comments

Filed under Boy Genius

21 responses to “of gratitude and really bad luck

  1. It absolutely makes sense and we would not want you to write about it anywhere else. {{{hugs}}} from the east coast

  2. Coming from LAFCA, so sorry that such a precious boy should go from worries about preschool and awful babysitters to hospitals, meds,illness. Wishing you all strength to get through.

  3. I am so sorry you are all going through this. We’re totally all here for you.

    As an aside, where could I find the link to the fb page? I’d like to join.

  4. chunkandmommy

    You have been in my thoughts since I found out. Last week when M and I went to Arkansas, we visited this wonderful church in the Ozark Mountains (Thorncrown Chapel) and as I sat in the pews, this non-religious woman wept for your family. I have ordered both myself and chunk shirts, so we can visually provide support and love and I posted a link on my fb and blog in hopes that the message spreads. You are all very loved and supported in the ways we can help, even from afar. Hugs mama.

  5. I am so sorry to hear that this is happening to your little boy. I’ve been thinking about your family constantly since I found out. It sounds like you are in the very best of hands. I continue to send you positive thoughts as you move forward in this journey.

  6. Rachel Springfield

    I am so sorry about all that you are going through. You might want to know that there is another 2 mom family going through this too. http://lenoxslaystheleukemiasaurus.com/ They might be able to offer you some info and support. Sending healing thoughts your way.

  7. KATHY

    this has to be one of the hardest things to ever go through. our prayers are definitely with u and ur little boy! my neice had leukemia diagnosed at 10months…shes 5 now. do u mind sharing ur caringbridge site with me? it is a wonderful place to give updates. the power of bringing together people for a greater good is bigger than u can imagine….trust it! much positive energy ur way! xo

  8. tbean

    It is so nice to hear your voice here and to have a chance to get an update from you. I can’t believe J. has to teach. But of course, she’ll do it because, as you point out, there is no choice. But as a teacher, I can appreciate how impossible that must be for her (and for you as well)–to maintain that professional life amidst this chaos. Sending hugs.

  9. We are all thinking about you three every day, and sending help in any way we can- joining the bone marrow registry, ordering t-shirts, donating, and holding you in our hearts. We are with you as much as we can be every step of the way.

  10. Just found out about your son’s diagnosis & I am in total disbelief. Fucking cancer … right!?! I have twin boys the same age as your little guy, and I can’t imagine what you two are going through now. All three of you are in my thoughts.

  11. Lex

    Thinking about you all the time and sending our best, healthy wishes to the three of you. Would love the link to the FB page too. Take care, you guys.

  12. Kim

    Thanks for the update. I am thinking of you guys constantly and hoping things are going as smoothly as they can for all of you. Sending you hugs.

  13. Valerie

    Thanks for the update. I don’t know the Facebook or Twitter links, and am also a bit of a science nerd, so I wondered if you minded sharing the name of the form of leukemia BG has been diagnosed with?

    Sending good vibes and healthy thoughts, especially for the chemo to work without too many bad side effects and a bone marrow donor to be found.

  14. I am so glad you are being flooded with support and love. We are sending all the positive energy we have BG’s way. Take care and please let us all know if there is anything we can do.

  15. Oh, my. Oh, no. My heart breaks for you guys. I am so, so sorry you are going through this and send all my healing thoughts BG’s way.

  16. Sending you hope, love and strength.

  17. Another longtime reader (rare commenter) writing in to be part of the flood of love, hope, peace, strength and health. Write when and how you need or want to–you have many readers here who will listen and offer support in whatever way we can.

  18. Such an amazing community we are a part of. I keep looking back and thinking I have been with your family since the ttc times. I will be donating on paypal today and you are in my thoughts.

  19. I am in tears as I’m reading your last few posts. I am at a loss for words. I will light a candle for your sweet boy and am sending positive thoughts to the three of you. xoxo

  20. You are in my thoughts and my prayers. I can not imagine having your world flipped upside down like that. I have been reading along with your story for years, I can only imagine how tightly you are holding BG right now. We are all supporting you and cheering you on from afar.

  21. I can’t imagine what this must be like. C (and you) has been heavy in our thoughts here.

    How can you find out if you’re a match?

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