Alex's Grammie Gale gave us a book on Non-Hodgkins Lymphomas (NHL), and according to this book, only 800 children per year are diagnosed with NHL's in the United States, and Lymphoblastic Lymphoma is just one of many sub-types of NHL - boy, aren't we lucky (insert sarcasm here)
We had a bad night last night - Alex was really nauseous from the Vincristine and Duanorubicin, and ended up throwing up all over the hallway last night. He woke up complaining that his stomach hurt four times. I ended up sleeping with him in his little bed for half the night. Then, Tessa-Lynn woke up with all of the commotion. We tried giving Alex some Benadryl for nausea, and that didn't work, and we couldn't give him another dose of Zofran until noon today.
He's much more lethargic than normal - and this kid is always a bundle of energy. He's exhausted, and so are we - and we still have almost 2 years to go.
I got a statement from the hospital listing the services received, and what they billed our insurance. For the period of 11/11 - 11/17, the bill was over $49,000 - of that, almost $16,000 was pharmaceuticals. This statement doesn't even cover the cost of the doctors...I don't know how anyone can go through this without health insurance. Hopefully, our insurance will pay for most of this, but to be honest, we are still trying to figure out what they will or won't pay for, and what, if any, the lifetime cap is. At this rate, we'll blow past one million dollars in Alex's coverage over the next two years!
Enough of the blahs - we have family and friends, and even strangers supporting us as we navigate this difficult path. We'll make it...I know we will!
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Sara...you should set up a PayPal account..for those that might want to contribute to Alex's care.
ReplyDeleteIt's amazing how we adjust to whatever situation comes our way, especially when it comes to children. You have brought up the insurance issue and may I suggest that it may be a good time to investigate, if you haven't already, the various organizations who are there to help with children's medical issues. I have heard that the Shreiners (sp), part of the Masons, (I think) are there to help. I worked with a young lady who's first baby was born with one short leg. Someone referred her to the Shreiners and they took care of the numerous surgeries necessary.
ReplyDeleteJust another suggestion and I hope it's helpful to you.
My warm thoughts to you and your family. Thank you so much for your very thorough blog.
Warmest regards,
Ann Adair, former Martinez neighbor
Oh, Sara...I'm so sorry to hear he had such a rough night! I've been so happy to see him full of energy...I hate that these meds are starting to catch up with him. The "new normal" right?
ReplyDeleteSending you lots of hugs today...when you all feel up to it, we'd love to visit. Erik keeps asking to play with Alex. Hope today is a brighter day for all of you!
xoxo
Erin
Hi -- this is Irena (Karina's mom). We've met at Camp Agape. Just found out your news from Sammy's blog. I'm so sorry. You are in our thoughts.
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