So this visit at the hospital was terrible. The standard of care has greatly diminished since we officially finished chemo. And it's not just with us, other people have noticed the same thing. I will be writing a letter, and also bringing to the attention of the ward supervisor.
Anyways!! I had to push them to let us go home on an LOA today/tonight.. so we go back tomorrow morning to get some blood counts and a platelet transfusion. I am just so glad to be home again. Now that it's the end of treatment, it feels so different... it just is so much harder to be there. As well, it doesn't help that there is this beautiful little girl Alivia, in the room next to us who has Neuroblastoma. This cancerous disease in almost incurable. 1 child in 100,000 get this disease. Because it's so rare there is no money or funding going towards research or cures. So the little boy who just died a couple weeks ago had it.. and there is now 2 others on the ward with it. She has giant tumers growing out of her head, that is causing her intense pain.. she's on a morphine pump around the clock. She has a beautiful family, including a new baby sister. I kept stealing her and just holding her in our arms.. putting her to sleep.. smelling her baby smell.. such a beautiful thing in the hospital.
To this point I have no idea what our follow up treatment will be. As far as I know I will continue to be at the hospital twice a week until his counts go up. Then after that I am not sure. We are however planning a Great Wolf Lodge Party getaway.. and need 10 rooms booked to get a great deal! So in the next few months keep posted! If you are interested in becoming a part of the party for Lyric's successful fight beating cancer please let me know.
We may be sharing this part with some friends we met at the hospital who's son, Ethan, also had AML.. and just finished his last round as well. We thought it would be a nice celebration together.
So other than that... my computer has broken.. and I have had it fixed twice. Unfortuantly it's on it's last legs. And of course I use this for my photography.. which I have some business that is coming my way!! So I went to Best Buy to apply for a card and nope! denied! haha.. well, I will have to figure this one out..
My new room mate is moving in Sunday.. so I have lots to do! Lyric and Ave are very excited to have new house-mates!
The weather has been beautiful.. a glimpse into what is coming soon.. and I can't wait!
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*sigh....it must be surreal to be home after this long battle. I am so happy that Lyric is doing well. So happy that you & he can be away from that depressing and heartwrenching experience.
ReplyDeleteSpring is coming, a time for renewing, rebirth and celebrating!
You did good!! You made it!!
P.S. Just got a new laptop and my old desktop is currently with a friend in the Falls. He's getting all my pics and files off of it, so it'll be brand new if you want it. It's still in great shape.....and FREE - just let me know if you want it.
Wow, that would be wonderful, thanks! should i call or email you to pick it up?
ReplyDeleteHey Sarah! Sounds like it is a very busy time for you. Great news that you have a friend moving in and hopefully soon things will be settled and Lyric's numbers will bounce back.
ReplyDeleteLet me know what dates you are thinking of for the Great Wolf Lodge. I have been thinking about taking the boys there for a while and would love to celebrate Lyric's recovery!!
Ashley C
I'm glad you are home again! And we will gladly be in on the GWL thing. Just let us know when. I'm so happy that you will be able to move on forward with your life now.
ReplyDeleteLynn