Hello everyone. It is hard for me to write this but my sister Jordan, Colin and Emma could use all of the help they can get right now. Their beautiful 4 year old daughter Emma has been diagnosed with a brain tumor. They have a long road ahead of them and will be in the hospital for a while. Anything helps and we appreciate it! Please keep miss Emma Craig in your thoughts and prayers! #Emmastrong
**UPDATE** from Mom and Dad
“If ever there is tomorrow when we’re not together, there is something you must always remember. You are braver than you believe, stronger than you seem and smarter than you think. But the most important thing is, even if we’re apart... I’ll always be with you.”
Our sweet angel baby took her last breath on this earth. She put up such a strong fight, up to the very last minute. She was in the arms of her mommy and daddy. There was no more fighting, no more yelling, only complete and utter love. Emma charlotte, we will never stop loving you, never stop telling your story and you’ll never leave our hearts. At just four years old, you went through more than any person should ever have to go through. But as excruciating as this is, I take solace in knowing how many lives and hearts you’ve touched. Baby girl, please hold me tight and don’t let go. You are my entire life and I don’t know if I’ll every understand why on earth this happened to you. You’re at peace now stinky lee and heaven is so lucky to welcome that beautiful smile. Mommy and daddy love you the mostest Emma. Rest In Peace✨
•Emma underwent a couple procedures under anesthesia yesterday:
A lumbar puncture, PIC line removal, and installation of a central venus catheter ( for chemo administration, stem cell rescues, and labs) was performed. She came out of the anesthesia pretty rough.
•We start chemo on Friday.
•There had been no real advancement in speech whatsoever, but she is moving her arms and legs around a lot more as well as tracking things with her eyes. From time to time we can get her to giggle.
That’s all I have for you guys right now. Keep your fingers crossed for chemo. It’s a very scary road considering the amount of therapy she has to go through.
What we know at this point:
• The surgical team removed the entire tumor from Emma’s brain. This was confirmed by two MRI’s.
• Emma was diagnosed with cancer: Grade:4 Medulloblastoma (1=best, 4=worst).
• Emma is going to need at least 6 months of very heavy chemotherapy to keep cancer from spreading and growth of new tumors.
• Treatment is going to be extremely taxing on Emma’s body. She will not have an immune system, or be able to produce bone marrow. Dr’s will have to harvest Emma’s stem cells before reintroducing them back into her body to help with bone marrow growth in turn, producing white blood cells.
• With the cancer being as bad as it is, there is still a 80%-82% survival rate with treatment
• The surgery left her with Akenetic Mustism: no real motor-skills unless caused by pain or hypertonia, and no speech. The mutism itself is very odd. It’s not that she can’t move or talk, like stroke victims, it’s more that she doesn’t care to. It’s really hard to explain, and there is little evidence as to why it happened despite what the all mighty google tells you. (This has been known to reverse with therapy in very severe cases).
#EMMASTRONG crew. You have been amazing. Even though I haven’t been able to reach out to you all personally, y’all make a huge differences knowing that we aren’t in this alone. Love you guys, and thank you for the continued support...(from Emma’s parents)
Emma had her second MRI 2/26 and it came back that her amazing surgical team retracted the entire tumor! Definitely the best news we have received thus far. With that being said, due to the location of her tumor, with it resting right on the cerebellum. There was a 20% chance(10% at this specific hospital) that she would get a condition known at akinetic mutism. Let me start by saying it is only temporary which we keep trying to remind ourselves.. But basically she is very irritable, can’t move her limbs and can’t talk. She’s still awake and coherent. With some physical therapy and speech therapy she will overcome the disorder. Could take months to accomplish, which she will be hospitalized for the duration.
We are still waiting on results from pathology to see what kind of cancer the tumor was and then we go from there. But she will definitely undergo chemo therapy soon.
Again, we can’t thank everyone enough for the outpour of support! We are so so grateful. It’s amazing to watch that this beautiful child has impacted so many lives already. And she will continue to do so!
- Taylor Lewko
- Lauren Perry
- Paul Masick
- Alonzo Thompson
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