O's Journey with PPB Type 1
Donation protected
In two days, my 9 month old baby boy will be going in for surgery on his lungs. He was diagnosed with PPB type 1 about a month ago. This initial story area on here used to say a bunch but I am editing it to show my last update instead because I feel like it is more helpful for people that don't know what PPB is and what our beautiful boy is going through. Here is my last update:
I was asked about PPB so I felt that I should explain it for everyone following O's story. O was dianosed with type 1 PPB. He goes in for surgery to remove the cancerous cysts from his lungs on Monday, Memorial Day. If you were to see him right now, it appears as if he has pneumonia. Unfortunately, it's not just treated with antibiotics.
PPB stands for pleuropulmonary blastoma, which is a rare childhood lung cancer that is usually diagnosed before the age of 5.
Type I: Type I PPB generally occurs in children younger than 1 year and is made up of mostly cysts, with almost no small, solid tumors that are called nodules. A thin layer of the wall of the cyst may appear cancerous. Type I PPB usually has the best prognosis of the different types. (https://www.cancer.net/cancer-types/pleuropulmonary-blastoma-childhood/stages)
The hope is that the surgery will be enough and that they will not have to move forward with chemotherapy but we will know for sure after Monday. He should not need radiation for type 1. There is a chance of this coming back in the future and becoming type 2 or 3 instead but his specialist thinks that it is a slim chance for him.
O has been hospitalized for weeks while waiting for his surgery because he has trouble keeping his oxygen levels up without assistance and has been very uncomfortable so has needed medication on a daily basis. His little body is just under a lot of stress right now and it's really hard to watch. I have been with him every single day though. We are out of state receiving care from a specialist and surgeon that have dealt with this rare diagnosis before.
My husband and two older children are back at home continuing school and work. I am on medical leave from work but unfortunately that doesn't pay. My husband is still working instead of being with us because we need his income. We don't have any savings left and we are struggling with just his income. We haven't finished paying rent for May and now June 1st is next week. That is why I set this up. To try and get help during all of this. I'm getting help with necessities here after meeting with the hospital social worker and we have gotten a little bit of help with our electricity bill but that is it. My husband did sell some unused baby/kid items but didn't get much for it and unfortunately, we don't have much else that would be worth anything. If you can help at all by donating or sharing, please do! We would greatly appreciate any help at this point.
Sorry this was so long! Thank you for reading if you made it this far. Please keep our beautiful boy in your thoughts on this Memorial Day weekend!
I was asked about PPB so I felt that I should explain it for everyone following O's story. O was dianosed with type 1 PPB. He goes in for surgery to remove the cancerous cysts from his lungs on Monday, Memorial Day. If you were to see him right now, it appears as if he has pneumonia. Unfortunately, it's not just treated with antibiotics.
PPB stands for pleuropulmonary blastoma, which is a rare childhood lung cancer that is usually diagnosed before the age of 5.
Type I: Type I PPB generally occurs in children younger than 1 year and is made up of mostly cysts, with almost no small, solid tumors that are called nodules. A thin layer of the wall of the cyst may appear cancerous. Type I PPB usually has the best prognosis of the different types. (https://www.cancer.net/cancer-types/pleuropulmonary-blastoma-childhood/stages)
The hope is that the surgery will be enough and that they will not have to move forward with chemotherapy but we will know for sure after Monday. He should not need radiation for type 1. There is a chance of this coming back in the future and becoming type 2 or 3 instead but his specialist thinks that it is a slim chance for him.
O has been hospitalized for weeks while waiting for his surgery because he has trouble keeping his oxygen levels up without assistance and has been very uncomfortable so has needed medication on a daily basis. His little body is just under a lot of stress right now and it's really hard to watch. I have been with him every single day though. We are out of state receiving care from a specialist and surgeon that have dealt with this rare diagnosis before.
My husband and two older children are back at home continuing school and work. I am on medical leave from work but unfortunately that doesn't pay. My husband is still working instead of being with us because we need his income. We don't have any savings left and we are struggling with just his income. We haven't finished paying rent for May and now June 1st is next week. That is why I set this up. To try and get help during all of this. I'm getting help with necessities here after meeting with the hospital social worker and we have gotten a little bit of help with our electricity bill but that is it. My husband did sell some unused baby/kid items but didn't get much for it and unfortunately, we don't have much else that would be worth anything. If you can help at all by donating or sharing, please do! We would greatly appreciate any help at this point.
Sorry this was so long! Thank you for reading if you made it this far. Please keep our beautiful boy in your thoughts on this Memorial Day weekend!
Organizer
Kayla Smith
Organizer
Williston, FL
