Mavericks LCH Childhood Cancer Journey
Donation protected
This go fund me has been created to not only share our journey, but to spread awareness as we ask for your help and support through this time.
Maverick Charles Smith was born in Tamworth 7th September 2020, a rare birth then, and even now an even more rare baby.
Long nights and days with a usually unsettled baby which we now understand was pain and low blood counts, he had always been trying to tell us something. After his 4 month immunisations Mav was sent for an emergency appointment with a paediatric dermatologist in Newcastle who sent a biopsy of his skin lesions/spots.
It was then a week later Maverick was diagnosed with Langerhans Cell Histiocytosis (LCH). First point of call was to see if and where else the cancer/disease was in his tiny body. Bloods and ultrasound in Tamworth showed some alarming numbers and we were soon transferred to John Hunter Children’s Hospital oncology ward. That transfer was in February and he remains an inpatient today.
Since arriving Mav underwent an MRI, CT, multiple X-rays and ultrasounds most of these were done under a general anaesthetic. All of these were conclusive of the range. LCH was found in Mavericks lungs including cysts in lungs, lymph nodes, skin, bone marrow, bony lesions and liver.
From then on the whirlwind, since being here we have had 3 blood transfusions (one in which he reacted), a central line surgically inserted to administer chemotherapy, numerous blood tests, he picked up picornovirus which then he required high flow oxygen, a feeding tube, and pain relief.
Maverick was invited to be a part of a clinical trial for LCH due to its rareness, we have been told 1-2 in every million babies, or 1:200,00 children. Being a part of this trial was a decision Alex and Jess made to not only help the ones who need to know learn, but to make sure future families have the best standard treatment, education and support.
The trial states, the course of MS-LCH (multisystem) is unpredictable upon diagnosis, ranging from spontaneous healing to rapid progression and fatal outcomes.
Our story at the moment is that we are in Newcastle until May some time, as he finishes this first course of intense chemotherapy. Following will depend on how his MRIs and scans show, if any improvement. RMH is providing an accomodating unit for our family in this time, with chemo to continue for 12-24 months. We are asking for your help friends and family and people this story may touch. We are trying our best to keep life as normal for Matilda, along with the travelling, food bills, living expenses while in two different cities. Jess is unable to return to work until a definite plan of Mavericks treatment when her original plan was to return in the next few months.
Any support will be used to offset our money worries, support and maintain normality for Matilda and remaining will be to support the oncology family rooms and support in John Hunter, redkite and Ronald McDonald house in Newcastle.
Thankyou for reading, we thank everyone for their messages, love, prayers and support.
Alex, Jess, Matilda and Maverick.
Maverick Charles Smith was born in Tamworth 7th September 2020, a rare birth then, and even now an even more rare baby.
Long nights and days with a usually unsettled baby which we now understand was pain and low blood counts, he had always been trying to tell us something. After his 4 month immunisations Mav was sent for an emergency appointment with a paediatric dermatologist in Newcastle who sent a biopsy of his skin lesions/spots.
It was then a week later Maverick was diagnosed with Langerhans Cell Histiocytosis (LCH). First point of call was to see if and where else the cancer/disease was in his tiny body. Bloods and ultrasound in Tamworth showed some alarming numbers and we were soon transferred to John Hunter Children’s Hospital oncology ward. That transfer was in February and he remains an inpatient today.
Since arriving Mav underwent an MRI, CT, multiple X-rays and ultrasounds most of these were done under a general anaesthetic. All of these were conclusive of the range. LCH was found in Mavericks lungs including cysts in lungs, lymph nodes, skin, bone marrow, bony lesions and liver.
From then on the whirlwind, since being here we have had 3 blood transfusions (one in which he reacted), a central line surgically inserted to administer chemotherapy, numerous blood tests, he picked up picornovirus which then he required high flow oxygen, a feeding tube, and pain relief.
Maverick was invited to be a part of a clinical trial for LCH due to its rareness, we have been told 1-2 in every million babies, or 1:200,00 children. Being a part of this trial was a decision Alex and Jess made to not only help the ones who need to know learn, but to make sure future families have the best standard treatment, education and support.
The trial states, the course of MS-LCH (multisystem) is unpredictable upon diagnosis, ranging from spontaneous healing to rapid progression and fatal outcomes.
Our story at the moment is that we are in Newcastle until May some time, as he finishes this first course of intense chemotherapy. Following will depend on how his MRIs and scans show, if any improvement. RMH is providing an accomodating unit for our family in this time, with chemo to continue for 12-24 months. We are asking for your help friends and family and people this story may touch. We are trying our best to keep life as normal for Matilda, along with the travelling, food bills, living expenses while in two different cities. Jess is unable to return to work until a definite plan of Mavericks treatment when her original plan was to return in the next few months.
Any support will be used to offset our money worries, support and maintain normality for Matilda and remaining will be to support the oncology family rooms and support in John Hunter, redkite and Ronald McDonald house in Newcastle.
Thankyou for reading, we thank everyone for their messages, love, prayers and support.
Alex, Jess, Matilda and Maverick.
Organizer
Jessica Smith
Organizer
New South Wales
