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| Sinatra in the pre-op room after receiving her 'happy medicine'. |
Just when things seem to be looking very positive we get more information that knocks us backwards. Today we confirmed that Sinatra has a genetic mismatch in her Leukemia called MLL. This genetic mismatch means that regardless of how Sinatra reacts to the chemo therapy, she is considered a ‘very high risk’ case. This means that she is more likely to relapse and the chemo therapy is a more intense regiment for the first year. This first year of chemo is going to be extremely hard for everyone, especially Sinatra. Sometimes you don’t feel prepared to deal with this because you can already see how hard it will actually be, but we are committed to staying positive and doing whatever it takes no matter how difficult.
Earlier in the day Sinatra had another spinal tap that took another sample of spinal fluid and put chemo therapy into her spinal column. It kills us to watch our baby be taken away to an operating room crying, but this is the 3rd time in a week so in a weird way we are used to this feeling.
Earlier in the day Sinatra had another spinal tap that took another sample of spinal fluid and put chemo therapy into her spinal column. It kills us to watch our baby be taken away to an operating room crying, but this is the 3rd time in a week so in a weird way we are used to this feeling.
Thinking about your family on a daily basis. Maybe you captured the right moments in your pictures, but she still seems so full if life which is so great to see! When you feel a slight set back and you want to be positive but also struggle, remember that your family and friends are all staying positive for you and are right behind you supporting you from a distance.
ReplyDeleteLink and Jenn. Kim and I are keeping your family in our thoughts and prayers! She is a very brave girl and has two great parents.
ReplyDeleteJenn and Link, thanks for creating this space to share Sinatra's story. I'm sorry to hear about the MLL but hopeful this just means her doctors can meet her specific needs even better than before. We are thinking about you and sending prayers. With love, the Karlsson family
ReplyDeleteHi Link -- Remember, you are Superman, you CAN do this! My husband and I have been Wish Granters for Make A Wish Foundation for 8 years. We've had the pleasure of meeting 12 families, and all are sucess stories! Our second child had the type of Leukemia Sinatra has. He was 4 at the time, and today (now 9) he plays basketballl, runs track at school and has no problem keeping up with his two older brothers! I've seen first hand how tough this can be on families, but Link, every one of them is proof that miracles do happen! We have a star shaped pin for each child we've granted wishes to, and I would like to send one for each of you to wear and remind you to never stop believing. The kids are called "Stars of Success" and Sinatra Lynn will be a star too! Pleasr email me your address when you have a minute (I know that isn't often) and in the mean time, know there are prayers and good wishes coming to you from Wisconsin! --- Deb Weier
ReplyDeleteLink & Jen - I havent been able to stop thinking about you guys and Sinatra since we chatted last night. I told Link - she is going to pull through, because there is simply no other way. I have been praying ever since and we are here for everything else you need - dont hesitate, any time, any day...Simi
ReplyDeleteJenn-My thoughts and prayers are you with you and beautiful Sinatra. Please know that you and your family are incredibly strong and will get through this together. Don't hesitate to reach out if you need anything at all.
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