I am Erica and I am creating this fundraiser for my cousin's 6 year old son, Lewis, who was diagnosed July 2020 with a rare soft tissue sarcoma.
Lewis is a spunky kid who loves legos, Avengers, puzzles, and Star Wars. Lewis is about to start the first grade. There are four kids in the family, Antigone (age 8), Kenneth (age 1), and the newest edition born in July 2020, PJ.
Update from Dynae on November 2, 2020
After talking with the doctors (and team) about the scans; we have a plan. So, there is good news and bad news with the scans. Overall, I think it is good news.
The good news first! His PET, Echo, and MRI looked good and showed nothing new! That is GREAT news. I am over the moon happy about this!!!
The not so great news. The previous CT scan showed three nodules (possible tumors) in his lungs. The New CT scan showed that two of the three have not changed. So, they do not believe they are tumors (yahoo!).
The third one did grow (boo!). This one they believe is a tumor. His doctor (and us) are making plans to have lung surgery at Cincinnati Children’s. Cincinnati has the more aggressive surgery. This surgery uses a dye to identify potential tumors that the CT scan may not have picked up on. This will take place before Thanksgiving, if not super sooner. I will keep you all updated.
A smidge of background; the CIC-DUX4 tumors most of the time will show up in the lungs, and reappear at the site of the original tumor. In Lewis’ case mid-inner left thigh. Good news is it hasn’t shown back up in his thigh. The doctors are very concerned with his lungs.
Thank you all for the continued prayers, support, goodies, aid, friendship, and love. I would not be functioning if we didn’t have the amazing village we have. Deepest thank you!!!!
#TeamUtz #LEWISSTRONG
Below is from LT, my cousin, and his wife Dynae on 8/4/20.
"The Plan (as of now), is to put the Port in next week and do a biopsy of the lymph nodes in his groin (those “lit up” on the PET scan). Then the following week we are starting Chemotherapy. We haven’t ruled out a second opinion, but UK works with a LARGE network of pediatric cancer doctors that include Cincinnati Children’s, Duke University Children’s, St. Jude, and many many more around the world.
The results of his scans were mostly okay. The PET lit up the lymph nodes. The CT showed several tiny tumors in his chest (they believe chemo will take care of those).
We are on a 21 (ish, depending on how blood counts) week plan with chemotherapy and radiation treatment. With chemotherapy he will have to stay in the hospital some while taking treatments. He will lose his hair and might get fairly sick.
We should know type soon, along with staging and survivability.
Prayers, thought, good vibes, encouragement, support, etc. are much appreciated. Thank you!!!!
While I am optimistic all will work out, I am still a wreck!!! Once I digest all that happened today, we can move on to the next thing! With how energetic and strong willed Lewis is, I feel he will do well with the treatments! Yes, there are some really crazy stupid tough days ahead!! However, I remain hopeful and full of faith! Worry will breed stress and depression, and that gets us nowhere. I know I will have worry and stress. I hope I can deal with them and keep moving forward! Just keep swimming! #TeamUtz #LEWISSTRONG"
Needless to say the bills will add up from the countless stays in the hospital and from LT having to miss work . Let's surround this family with love and prayers. Anything you can give will be so helpful and appreciated.
Lewis is a spunky kid who loves legos, Avengers, puzzles, and Star Wars. Lewis is about to start the first grade. There are four kids in the family, Antigone (age 8), Kenneth (age 1), and the newest edition born in July 2020, PJ.
Update from Dynae on November 2, 2020
After talking with the doctors (and team) about the scans; we have a plan. So, there is good news and bad news with the scans. Overall, I think it is good news.
The good news first! His PET, Echo, and MRI looked good and showed nothing new! That is GREAT news. I am over the moon happy about this!!!
The not so great news. The previous CT scan showed three nodules (possible tumors) in his lungs. The New CT scan showed that two of the three have not changed. So, they do not believe they are tumors (yahoo!).
The third one did grow (boo!). This one they believe is a tumor. His doctor (and us) are making plans to have lung surgery at Cincinnati Children’s. Cincinnati has the more aggressive surgery. This surgery uses a dye to identify potential tumors that the CT scan may not have picked up on. This will take place before Thanksgiving, if not super sooner. I will keep you all updated.
A smidge of background; the CIC-DUX4 tumors most of the time will show up in the lungs, and reappear at the site of the original tumor. In Lewis’ case mid-inner left thigh. Good news is it hasn’t shown back up in his thigh. The doctors are very concerned with his lungs.
Thank you all for the continued prayers, support, goodies, aid, friendship, and love. I would not be functioning if we didn’t have the amazing village we have. Deepest thank you!!!!
#TeamUtz #LEWISSTRONG
Below is from LT, my cousin, and his wife Dynae on 8/4/20.
"The Plan (as of now), is to put the Port in next week and do a biopsy of the lymph nodes in his groin (those “lit up” on the PET scan). Then the following week we are starting Chemotherapy. We haven’t ruled out a second opinion, but UK works with a LARGE network of pediatric cancer doctors that include Cincinnati Children’s, Duke University Children’s, St. Jude, and many many more around the world.
The results of his scans were mostly okay. The PET lit up the lymph nodes. The CT showed several tiny tumors in his chest (they believe chemo will take care of those).
We are on a 21 (ish, depending on how blood counts) week plan with chemotherapy and radiation treatment. With chemotherapy he will have to stay in the hospital some while taking treatments. He will lose his hair and might get fairly sick.
We should know type soon, along with staging and survivability.
Prayers, thought, good vibes, encouragement, support, etc. are much appreciated. Thank you!!!!
While I am optimistic all will work out, I am still a wreck!!! Once I digest all that happened today, we can move on to the next thing! With how energetic and strong willed Lewis is, I feel he will do well with the treatments! Yes, there are some really crazy stupid tough days ahead!! However, I remain hopeful and full of faith! Worry will breed stress and depression, and that gets us nowhere. I know I will have worry and stress. I hope I can deal with them and keep moving forward! Just keep swimming! #TeamUtz #LEWISSTRONG"
Needless to say the bills will add up from the countless stays in the hospital and from LT having to miss work . Let's surround this family with love and prayers. Anything you can give will be so helpful and appreciated.
Organizer and beneficiary
Dynae Utz
Beneficiary