Journal entry by Tucker Wright —
We've learned so much in this past week! We feel so fortunate to have been able to take our son to Nationwide Children's Hospital for a consultation in Ohio last week! Thank you to all of our family who made this possible!! This team is simply AMAZING to say the least!! Now that we've gone, our son will never go anywhere else for this problem!
We headed out very early Tuesday morning and had our appointment all day Wednesday and returned on Thursday early morning. We are blessed to have been able to make a quick trip because Tanner couldn't join us, so thankful we were able to fly and not drive! 🙏🏻 Tucker has only flown one other time and he had some anxiety, but like always, he persevered! ROCK STAR!!
What we found out was more than we have ever known for the past 10 years since he was diagnosed with Hepatoblastoma,10 years ago. We knew then that he was positive for the FAP gene, but really had no idea what that meant! This team, Dr Erdmans's team, is indescribable! A psychiatrist, psychologist, geneticist, surgeon and Dr Erdman. I am FILLED with information that we have been waiting for!
For the past several years, since we found out Tuck's original diagnosis was linked to a gene, Blank's Hospital in Desmoines has attributed it to Brett's "side of the family", due to the family history of colon cancer. We've never met with anyone who knows ANYTHING other than speculation for all these years! What a burden for my husband 😢! Brett and I chose not to get tested for the gene at that time due to the ramifications of having the gene and losing health insurance/life insurance (thank you to Uncle Bruce Braley and Obama Care for making "pre exhisting conditions" not be held against you)...I feel things may be different had that been the case 10 years ago. Tanner tested negative back then (it's a 50/50 chance you will pass the gene on if you have it)...so we decided not to grow our family at that time, that Brett and I would have regular colon screenings(colonoscopies) instead due to the insurance ramifications. To be honest, I'm now somewhat bitter that we had to make that decision way back then! 😢
We have both had 3 colonoscopies and FEW polyps were found, that information is very interesting now that we know all of this!!
Come to find out, long story short, is that Tucker's gene, although very similar in how it plays out, is not linked to Brett's side of the family. They are certain that he is a "first generation". This is good and bad because if it was linked, we would know about the time in his life that colon cancer presents, but because he is the first, it's kinda a guessing game. That's why I am so THANKFUL to be connected to Dr Erdman, he's the ONLY DR in pediatrics that specializes in this gene (FAP).
I won't go into detail about the genetic side because it's all so confusing to me and the geneticist has had to explain everything over and over again these past several days. What I do know is that FAP IS RARE, and Tucker has one of the rarest cases ever, he is a "first generation" and has a deletion of Exon 15 APC Gene. The hospital who deals with this gene daily, has only found 3 cases in their database where the whole 15 was deleted! WE KNEW THIS BOY WAS SPECIAL FROM THE DAY HE ARRIVED!!
Here's what we do know; we will continue to get colonoscopies in Ohio, not in DesMoines, they know they cannot handle Tuck's situation. We will plan for a colectomy surgery and pray that it doesn't have to occur until the summer after Tucker graduates. (This is what he and Dr Erdman talked about)if it is possible. If it cannot, then we deal as we need, surgery is inevitable.
In the mean time, we need to keep praying. We've been making some changes in our diet and adding turmeric to Tuck's daily routine (lots of debate on this working but we are gonna try everyday we can)! We are going to try to be positive (me) and enjoy our son being happy, active, ambitious, creative and fun! He will indeed be able to do all of those things after surgery, but the healing time is difficult and the after effects of surgery are not fun😢
Thank you all for your continued prayers and support for our family! We are so blessed in so many ways! I'm thankful that Tanner is negative for the gene and that we have found a Dr that knows all there is to know about this gene! GOD BLESS YOU ALL!! Thank you!
We headed out very early Tuesday morning and had our appointment all day Wednesday and returned on Thursday early morning. We are blessed to have been able to make a quick trip because Tanner couldn't join us, so thankful we were able to fly and not drive! 🙏🏻 Tucker has only flown one other time and he had some anxiety, but like always, he persevered! ROCK STAR!!
What we found out was more than we have ever known for the past 10 years since he was diagnosed with Hepatoblastoma,10 years ago. We knew then that he was positive for the FAP gene, but really had no idea what that meant! This team, Dr Erdmans's team, is indescribable! A psychiatrist, psychologist, geneticist, surgeon and Dr Erdman. I am FILLED with information that we have been waiting for!
For the past several years, since we found out Tuck's original diagnosis was linked to a gene, Blank's Hospital in Desmoines has attributed it to Brett's "side of the family", due to the family history of colon cancer. We've never met with anyone who knows ANYTHING other than speculation for all these years! What a burden for my husband 😢! Brett and I chose not to get tested for the gene at that time due to the ramifications of having the gene and losing health insurance/life insurance (thank you to Uncle Bruce Braley and Obama Care for making "pre exhisting conditions" not be held against you)...I feel things may be different had that been the case 10 years ago. Tanner tested negative back then (it's a 50/50 chance you will pass the gene on if you have it)...so we decided not to grow our family at that time, that Brett and I would have regular colon screenings(colonoscopies) instead due to the insurance ramifications. To be honest, I'm now somewhat bitter that we had to make that decision way back then! 😢
We have both had 3 colonoscopies and FEW polyps were found, that information is very interesting now that we know all of this!!
Come to find out, long story short, is that Tucker's gene, although very similar in how it plays out, is not linked to Brett's side of the family. They are certain that he is a "first generation". This is good and bad because if it was linked, we would know about the time in his life that colon cancer presents, but because he is the first, it's kinda a guessing game. That's why I am so THANKFUL to be connected to Dr Erdman, he's the ONLY DR in pediatrics that specializes in this gene (FAP).
I won't go into detail about the genetic side because it's all so confusing to me and the geneticist has had to explain everything over and over again these past several days. What I do know is that FAP IS RARE, and Tucker has one of the rarest cases ever, he is a "first generation" and has a deletion of Exon 15 APC Gene. The hospital who deals with this gene daily, has only found 3 cases in their database where the whole 15 was deleted! WE KNEW THIS BOY WAS SPECIAL FROM THE DAY HE ARRIVED!!
Here's what we do know; we will continue to get colonoscopies in Ohio, not in DesMoines, they know they cannot handle Tuck's situation. We will plan for a colectomy surgery and pray that it doesn't have to occur until the summer after Tucker graduates. (This is what he and Dr Erdman talked about)if it is possible. If it cannot, then we deal as we need, surgery is inevitable.
In the mean time, we need to keep praying. We've been making some changes in our diet and adding turmeric to Tuck's daily routine (lots of debate on this working but we are gonna try everyday we can)! We are going to try to be positive (me) and enjoy our son being happy, active, ambitious, creative and fun! He will indeed be able to do all of those things after surgery, but the healing time is difficult and the after effects of surgery are not fun😢
Thank you all for your continued prayers and support for our family! We are so blessed in so many ways! I'm thankful that Tanner is negative for the gene and that we have found a Dr that knows all there is to know about this gene! GOD BLESS YOU ALL!! Thank you!
Patients and caregivers love hearing from you; add a comment to show your support.
Help Tucker Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Tucker's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?