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Lennon'sFightw/SystemicMastocytosis

$25,304 of $75,000 goal

Raised by 645 people in 11 months
Created September 27, 2018
This page was created for Lennon, an infant with an extremely rare disease. Her mommies Staci H. and Tatiana M. are both school teachers in California.

I am hoping that this campaign  will help them with the financial burden of Lennon’s continuous and complex care.

Lennon is a 1 year old precious baby girl, that has a current diagnosis of:
"Systemic mastocytosis (SM) is a form of mastocytosis in which mast cells accumulate in internal tissues and organs such as the liver, spleen, bone marrow, and small intestines. It is typically diagnosed in adults. Signs and symptoms vary based on which parts of the body are affected. The disorder is usually caused by somatic changes (mutations) in the KIT gene. Most cases are sporadic and not inherited, but familial cases rarely have been reported."
https://rarediseases.info.nih.gov/diseases/8616/systemic-mastocytosis

Below I have copied some updates from her Facebook page.
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Update: 8/28/18 “After consultation with the NIH, we have decided to go forward with the surgery to remove the mass that has grown from 1 inch on Friday night to 3 inches yesterday. While she is put out we will also have an endoscopy, MRI, and bone marrow biopsy. The pediatric anesthesiologists at Cottage Hospital do not feel comfortable being the first to use anesthesia on Lennon, so we are waiting for another hospital willing to take on her case. A lot has changed in 24 hours, but we are all taking it in stride and hoping to find a hospital will to treat her so we can figure it all out.”

Update-8/30/18: Lennon was accepted at UCLA and was transported by ambulance late last night.

Update-9/2/18: Lennon was released from UCLA today without the planned procedures. Staci and Tatiana are “beyond disappointed at UCLA for accepting her case knowing the risks then backing out and giving us no help or a treatment plan. We have lost time, money and energy”. Tatiana and Staci are “grateful for this learning experience and the wonderful nurses”. They will take Lennon home to make her as comfortable as possible while her specialist continues the search for a place that will implement the plan UCLA failed to execute.

Update-9/7/18: Lennon has been readmitted to Santa Barbara Hospital for drainage of her mass and further testing.

Update-09/11/18: The mass was drained over the weekend and a large amount of blood was removed. Which was not expected. Further testing was performed and Lennon's diagnosis has been confirmed to be "Massive Nodular Well Differentiated Systemic Mastocytosis", which is not good news. Staci, Tatiana, and Lennon's care team are figuring out next steps.

Update- 9/16/18: The doctors at UCLA took out the solid mass and drained the fluid around the mass. They drained over 100 cc of fluid. They also did a bone marrow biopsy. Staci and Tatiana hope that this will help us figure out a better treatment plan. Lennon’s mommies are doing their best at keeping her comfortable. Without opioids this is a challenge. They hope the swelling will go down in the coming days. Staci and Tatiana want everyone to know they are “Grateful for everyone’s love and support. Grateful for the opportunity to spend one more night with our little girl. We would like to thank everyone for the prayers and well wishes”. After another ultrasound to confirm there was not a blood clot in her arm, they were discharged and went home last night.
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Lennon had a hemo-oncology appointment this morning followed by a bone marrow biopsy.
Lennon recovered from anesthesia and we were able to go home after her procedure.
We are expecting results next week.
Thank you all for your support and love ♥️
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We had an intense week with lots of calls and texts to doctors. Lennon has been dealing with episodes of head swelling and difficulty breathing. We believe it’s due to her tryptase number starting to climbing back up. Her neutrophils continue to drop. We continue to do all we can to protect her from illness. This morning she had an ultrasound on her liver and spleen. She continues to amaze us with her determination. Thank you so much for everyone’s love and support during this journey.
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The last days have been unyielding. Lennon was pulled off her IND chemo due to severe Neutropenia. We aren’t sure how quickly her blistering, anaphylaxis and growths will come back. We are incredibly grateful for this time with her. We are staying positive that this is just a little bump in the road. We are incredibly grateful to her wonderful doctors who pick up their phones on the 4th of July repeatedly and nurses that show so much love to Lennon and us.
Thank you so much to everyone for your love and support.
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Yesterday a mass started to appear on Lennon’s head. It was unprovoked and it grew in size at a alarming rate. Many calls back and forward to ucla and a visit to her pediatrician we decided the best plan of action is to keep her home unless she spikes a fever.

We are extremely concerned this is a mass like the one that grew uncontrollably in her axial. (IND chemo helped resolve.)
We are doing everything in our power to keep her comfortable. She continues to amaze us with her determination and positive attitude.

We are extremely grateful for the love and support we have encountered in the journey.
Thank you everyone that has shared Lennon’s story. Thank you for posting #lennonswarriors pictures We appreciate the support.
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$25,304 of $75,000 goal

Raised by 645 people in 11 months
Created September 27, 2018
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