Really not sure where to put this...

[DKW 86 7,419]

AWESOME NEWS!!!!!

 

[Didba 5,256]

On 9/3/2022 at 1:47 AM, bigbird said:

Well, it's here.

After almost a year of negotiations, contracts, new protocols, and multiple hospital committee reviews and approvals we had the final site visit last week from Novo nordisk and are scheduled to have our first appointment and medication on September 13th.   

We've been discussing this drug for 9 years and it's finally happening. We are beyond ready and excited. Any and all continued prayers or well wishes are appreciated. Thanks, Guys!

Damn, man.

[AUFAN78 3,894]

Prayers sent. God bless you and your family brother.

[AUSwim 54]

Prayers for your whole family but specially for positive results for James from this clinical trial.

[bigbird 60,515]

We finally made it! Yesterday was such a great day. I can't really explain the excitement coursing through the HTC.  

I'll just copy what my wife wrote on FB...

James will receive his first dose of his trial medication tomorrow!! This is the day we have been dreaming of for years, and quite honestly, thought might never happen. James has always lived by the verse Joshua 1:9 "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." We know God is with James and we are entering this trial with peace. We truly believe this is the miracle we've been waiting for and that tomorrow is the first day of a new and improved life for our boy! We ask all of our friends and family to please join us in prayers of healing and thankfulness for all God is doing for James!

 

James was able to receive the first dose of his trial medication today!!  So far he has not had any adverse reactions.  His doctor told him the current data from the study is more positive than they had originally anticipated!  We continue to pray James will also get to  experience these positive results!  We do know that God has a plan for James' life and we are so excited to be a part of it!

 

James is now one of 10-20 in the world on this trial.  We were initially told that it may reduce episodes by about half, that itself would be miraculous. However, between anecdotal evidence from colleagues participating with other cases and the data being produced around the world, it has shown to reduce the annual bleeding episodes by 85% 🤯.   The last 3 years, James has avg about 50 bleeding episodes/yr. The thought of him having less than 10 is unfathomable to us. 

 

There's another God moment involved in all this too.  3 weeks ago, James felt some pain around his Port. That's usually an initial indicator of a Port infection.  We took him down to Houston and the confirmed an infection.  However, they were only able to get a single positive culture.  That one positive determined that they do the surgery to remove the Port access.  So we were in for about 10 more days and were released a about a week before we started the trial. Well, yesterday we found out that James would t have been allowed to participate in the trial if he had the port due to the potential for infection and surgery.  Those potentials would throw off the research and disallow our continuation. Neither us or the hematologist we're initially told about this stipulation or would've already prepared accordingly. However, that potential road block and derailment was completely removed and eliminated from consideration without anything from us.

 

After missing an avg of 130 days of school the last 3 years...

This morning my son went to school. This morning my son went to school for the first time in his 16 years without a port in his chest. This morning my son went to school for the first time without having to have the medication he's been on since '07. 

TODAY IS A GREAT DAY!

Praise God and thank you!

 

As a side note...

 @augolf1716,  I think is the only one I've told, but I had to step away from work about 2-3 years ago to take care of James full time. During that time I went back and received my nursing license and have been James' full-time unpaid pediatric home health nurse 😂.  It's been a struggle, but the relationship we have is so strong and special and I'm so thankful for that time.  

Everyone that has taken the time to pray, think fondly of, or taken time to reach out, thank you!

Y'all's love, support, and escape you have continued to provide me and my family is beyond humbling and has not gone unnoticed or unfelt. Thank you, thank you, thank you!

Humbly,

John

 

[I_M4_AU 7,805]

I’m so happy that things are looking up for James and your family.  Prayers are powerful.  

[SaltyTiger 7,795]

Happy for you and the joy. Great news and brightens an already gorgeous day!

[augolf1716 21,121]

Fantastic to hear can't imagine how James felt going to school

[bigbird 60,515]

4 hours ago, augolf1716 said:

Fantastic to hear can't imagine how felt James going to school

He just got home and ran through each period and what they did in each class. He was so pumped.  It was beautiful to listen to.

[Grumps 3,704]

This news makes me so happy! Thanks so much for sharing! Prayers for continued great news for James and you and your family.

[cbo 7,844]

On 9/14/2022 at 5:44 AM, bigbird said:

We finally made it! Yesterday was such a great day. I can't really explain the excitement coursing through the HTC.  

I'll just copy what my wife wrote on FB...

James will receive his first dose of his trial medication tomorrow!! This is the day we have been dreaming of for years, and quite honestly, thought might never happen. James has always lived by the verse Joshua 1:9 "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." We know God is with James and we are entering this trial with peace. We truly believe this is the miracle we've been waiting for and that tomorrow is the first day of a new and improved life for our boy! We ask all of our friends and family to please join us in prayers of healing and thankfulness for all God is doing for James!

 

James was able to receive the first dose of his trial medication today!!  So far he has not had any adverse reactions.  His doctor told him the current data from the study is more positive than they had originally anticipated!  We continue to pray James will also get to  experience these positive results!  We do know that God has a plan for James' life and we are so excited to be a part of it!

 

James is now one of 10-20 in the world on this trial.  We were initially told that it may reduce episodes by about half, that itself would be miraculous. However, between anecdotal evidence from colleagues participating with other cases and the data being produced around the world, it has shown to reduce the annual bleeding episodes by 85% 🤯.   The last 3 years, James has avg about 50 bleeding episodes/yr. The thought of him having less than 10 is unfathomable to us. 

 

There's another God moment involved in all this too.  3 weeks ago, James felt some pain around his Port. That's usually an initial indicator of a Port infection.  We took him down to Houston and the confirmed an infection.  However, they were only able to get a single positive culture.  That one positive determined that they do the surgery to remove the Port access.  So we were in for about 10 more days and were released a about a week before we started the trial. Well, yesterday we found out that James would t have been allowed to participate in the trial if he had the port due to the potential for infection and surgery.  Those potentials would throw off the research and disallow our continuation. Neither us or the hematologist we're initially told about this stipulation or would've already prepared accordingly. However, that potential road block and derailment was completely removed and eliminated from consideration without anything from us.

 

After missing an avg of 130 days of school the last 3 years...

This morning my son went to school. This morning my son went to school for the first time in his 16 years without a port in his chest. This morning my son went to school for the first time without having to have the medication he's been on since '07. 

TODAY IS A GREAT DAY!

Praise God and thank you!

 

As a side note...

 @augolf1716,  I think is the only one I've told, but I had to step away from work about 2-3 years ago to take care of James full time. During that time I went back and received my nursing license and have been James' full-time unpaid pediatric home health nurse 😂.  It's been a struggle, but the relationship we have is so strong and special and I'm so thankful for that time.  

Everyone that has taken the time to pray, think fondly of, or taken time to reach out, thank you!

Y'all's love, support, and escape you have continued to provide me and my family is beyond humbling and has not gone unnoticed or unfelt. Thank you, thank you, thank you!

Humbly,

John

 

This is beautiful. I'm so glad James has a Dad like you and you have a strong, brave son like James. Continued wishes for all the best. 

[aubiefifty 16,775]

On 12/24/2021 at 9:57 AM, bigbird said:

...but I know many have interest in and have graciously prayed for us. 

 

i do not remember this bit i hope it works bird!

[Leftfield 2,595]

How's James doing, @bigbird? Medication doing as well as hoped?

[bigbird 60,515]

1 hour ago, Leftfield said:

How's James doing, @bigbird? Medication doing as well as hoped?

It is working, sorta. We've had two bleeds but they've been much shorter and less severe.  We go back Monday to get labs and adjust the dosing.  Hopefully that makes it more effective.

[aubiefifty 16,775]

man i hope like the dickens it works and works well bird!!

[DKW 86 7,419]

Excellent news Bird!!!!