Help us, Help Josiah with his Medical Expenses.
Donation protected
***PLEASE NOTE THAT DONATIONS ARE IN U.S. DOLLARS ***
Some say that time flies when you are having fun I guess that's why Josiah's health concerns feels like forever to find a resolution.
This started with a regular doctor's visit for the common cold, which led to another flu-like virus and another, and another which escalated to us taking Josiah to the accident and emergency one night with a fever that we could not get under control. From then on it seemed like a down the rabbit hole type of scenario that blindsided my family.
Josiah was treated for Herpetic stomatitis, Gastroenteritis and High Fevers that would not go away once he was off medication. After a week he was stable enough to be discharged with a follow up in 1 week.
2 days after he got ill again.
His pediatrician did some blood test and found his blood count to be around 6g/dL and he was transferred to another hospital where he was warded for 8 days, after many, many, many blood test the doctors recommended a Bone Marrow Aspiration to look for signs of Leukemia, at this time his neutrophil count was 0.23
My wife and I were in a mental mess but my little superhero was able to smile through it all the day of the Bone Marrow Biopsy.
The scariest time of my life.
Fast forward to today, after 100+ pages of medical reports a negative Leukemia result, fighting weekly viral infections and constant probing no answer has been found. We were then advised by the pediatric doctors at the hospital to take him abroad for diagnosis and treatment.
On November 27th, 2018, Josiah has been accepted by the Mayo Clinic in Minnesota, U.S.A. and we are aiming to visit the clinic the second week in December 2018.
Donations to Josiah will be used to cover medical expenses that we incur at the Mayo Clinic. We are currently waiting on the exact date of the appointment and I have also asked for quotes for services such as doctor visits and CBC blood test just to have an average.
As parents, all we want is to see a smile back on his face.
Thank you.
***Update December 20th, 2018 By Jason Philip AKA Daddy***
From my entire family, I sincerely thank everyone who has supported; friends, coworkers, family and even strangers thank you for all of your support.
We have had to change Josiah's appointment since we did not have everything prepared, after informing the Mayo Clinic we were given a new appointment date of 9th January 2019, a bit far but once they get their US Visas I am going to ask for an earlier appointment.
Everyone has been pitching in to help, my sister has taken up the mantel of fundraising director and we have been hosting fortnightly BBQ's which have been a success, thanks to all of the folks who have assisted on this.
Its nerve wrecking when I try to function normally, looking every minute at my phone, thinking that every call from home carries bad news, its wrong of me to think that way but even though I am a dad underneath it all I'm only human, sadly we had one episode of this when one of Josiah's mouth ulcers got infected and prevented him from closing his mouth, after days of constant drooling and us having to feed him liquids with a spoon he was getting dehydrated and I had to rush him to A&E at the hospital.
When the A&E doctor on call saw Josiah's medical file he was honest enough to tell my wife and I that he is just going to treat the dehydration and stabilize him. A CBC was done there and the results reminded us in black and white the urgency of getting Josiah better; in the past, CBC reports his neutrophil count was around 0.26 to 0.23, this time the machines that did the test read 0.00
After numerous attempts to request an expiated date for my wife (Zuren) and son (Josiah) US Visa appointment, they finally had the interview at the consulate yesterday (19 Dec) with success, proving once again the power of prayer.
Not being the holder of a US Social Security Number I have asked Josiah's Godmother, Joey Floyd who lives in the US to accept the withdrawal of this Gofundme campaign (that's why it says to the top "on behalf of Joey Floyd) who will pass it onto us when we got to the USA.
We are not even there yet and the expenses have started, I booked an Air BnB that is 7 mins walk from the Mayo Clinic, I have looked at flights but have not booked anything yet and we have a bill of $1950 already showing up on Josiah's Mayo Clinic 1st doctors appointment.
***Update March 12th, 2019 By Jason Philip AKA Daddy***
As the days counted down we were all bubbling with excitement, the flight which Josiah handled a lot better than I thought together with his trusty companion Mr. Squirrel.
And before you knew it we were there, finally at the Mayo Clinic, Minnesota. Ready for answers and more so ready for a cure.
During the time that we spent there everything was done from scratch from courteous and professional staff, within two days of starting medication Josiah was able to sleep for the entire night, started playing and eating on his own again so much so that we had to utilize our extensive knowledge of "backyard engineering" to construct a car track, parking garage with rooftop heliport to engage Josiah's returning strength.
We also started seeing that Trillion dollar smile of his again.
Fast Forward to today after having the proverbial medical book thrown at us with everything down to Auto-inflammatory Syndromes Panel for Genetic Auto Immune illness which proved negative we left the Mayo Clinic with Josiah being diagnosed with:
1, High Inflammatory Markers in his blood which caused arthritis-like pain in his joints that kept him from sleeping for four months now resolved.
2, Anemia which is to date back to normal levels.
3, Neutropenia, is still ongoing followup blood work is closely monitored by his pediatrician and his team of doctors at the Mayo Clinic.
4, Paracoccidioidomycosis, a rare fungus that is attacking his body, this test is still pending as a blood sample had to be sent to the Center of Disease Control for identification.
Even though he is still neutropenic because most of the other symptoms that were affecting him have subsided for now he can enjoy a somewhat normal life again with control to the types of environment that he is exposed to.
We have to return to the Mayo Clinic in six months for a medical review or even before if the results from the Center for Disease Control come back positive for Paracoccidioidomycosis.
For now, we wait with a positive mindset and continuous prayer that we can give names to what has been affecting his little body for all this time.
Thank you again, everyone, who has supported us on this journey.
Thanks to these guys who created a really outstanding medical ecosystem (The Mayo brothers, founders of the Mayo Clinic).
***Update May 10th, 2019 By Zuren Philip AKA Mommy***
Josiah blood work relating to his immune system has not improved since leaving the Mayo Clinic, his mouth ulcers and sleepless nights had also returned. We were asked to bring him for a medical review ASAP.
He arrived back in Minnesota on the 24th April 2019 and has been there to date.
On the 26th April 2019, Josiah had to redo a Bone Marrow Biopsy to get an idea of what is going on in there presently, this was a success but one day after Josiah got fevers and was admitted to the Mayo Clinic's St. Mary's Hospital with a lung infection. He spent four days there before fighting it off with the assistance of G-CSF injections which bosted his bone marrow's ability to produce Neutrophils. The day he was discharged however he contracted C. difficile infection in his colon which has him with a hive like rash around his anus and most likely his rectum; he also complains about tummy pains most likely this is associated with this infection.
The Bone Marrow did not show any signs of cancer but confirmed that Josiah has Neutropenia, a rare 1-1,000,000 type of blood disorders, the type is yet to be determined but the treatment regime is more or less the same, daily injections of G-CSF which will help his bone marrow make enough neutrophils to enter his bloodstream.
Neupogen (Filgrastim) G-CSF (Granulocyte - colony stimulating factor ) the life-saving drug that Josiah needs cost about $300 USD per injection, per day and I have been trying to work with the insurance company to cover the cost of it in the interim Josiah's doctor at the Mayo Clinic is trying to arrange for him to be on The Severe Chronic Neutropenia International Registry which will allow him to have the injections for free, only thing is that it has to be delivered to a United States postal address.
The duration of the daily injections is one year for now but the doctor advised us that there is a possibility that it could be life long.
Josiah and I have arranged some accommodation at the Ronald McDonald House where they are currently staying which is a peace of mind not having to worry about hotel fees which I had to pay on a daily basis.
I received the first package of Neupogen injections for Josiah yesterday and I have started learning to administer the shots myself, its the time of the day that I fear the most, part of me can't wrap my mind around injecting my son daily but another part knows that the other options are not to his advantage.
It's difficult to fool Josiah now about what's going on, he knows that when he enters the elevator at the Mayo building that someone is going to stick a needle in his arm. Outside of the daily injections, he has to have CBC's done twice weekly to track his Neutrophil levels to make any modifications to the dosage of the medication and he hates it. He gets angry and has the look in his eyes as though he is saying "mommy please let them stop, it hurts" I hope that one day he can understand that it was all in his best interest and if I could take it away from him I would in an instant.
Daddy could not make the trip this time, so, for now, we wait on additional genetic test results for ALPS (Autoimmune Lymphoproliferative Syndrome) as well as a test result for ELANE-Related Neutropenia
***Update June 14th, 2019 By Zuren Philip AKA Mommy***
The Doctors have been struggling to get the right dosage for the G-CSF injections but the important thing is that he is getting the best care he can, he has contracted another infection "Clostridium difficile" which affects his colon, to date this is his third bout of this infection and it has him restless especially at night.
The Ronald McDonald House has a visit from Subaru and the Leukemia & Lymphoma Society where they interviewed me about Josiah's illness, this is the link to the article > https://www.kimt.com/content/news/cancerpatientdeliveries-511282081.html
***PLEASE NOTE THAT DONATIONS ARE IN U.S. DOLLARS ***
Some say that time flies when you are having fun I guess that's why Josiah's health concerns feels like forever to find a resolution.
This started with a regular doctor's visit for the common cold, which led to another flu-like virus and another, and another which escalated to us taking Josiah to the accident and emergency one night with a fever that we could not get under control. From then on it seemed like a down the rabbit hole type of scenario that blindsided my family.
Josiah was treated for Herpetic stomatitis, Gastroenteritis and High Fevers that would not go away once he was off medication. After a week he was stable enough to be discharged with a follow up in 1 week.
2 days after he got ill again.
His pediatrician did some blood test and found his blood count to be around 6g/dL and he was transferred to another hospital where he was warded for 8 days, after many, many, many blood test the doctors recommended a Bone Marrow Aspiration to look for signs of Leukemia, at this time his neutrophil count was 0.23
My wife and I were in a mental mess but my little superhero was able to smile through it all the day of the Bone Marrow Biopsy.
The scariest time of my life.
Fast forward to today, after 100+ pages of medical reports a negative Leukemia result, fighting weekly viral infections and constant probing no answer has been found. We were then advised by the pediatric doctors at the hospital to take him abroad for diagnosis and treatment.
On November 27th, 2018, Josiah has been accepted by the Mayo Clinic in Minnesota, U.S.A. and we are aiming to visit the clinic the second week in December 2018.
Donations to Josiah will be used to cover medical expenses that we incur at the Mayo Clinic. We are currently waiting on the exact date of the appointment and I have also asked for quotes for services such as doctor visits and CBC blood test just to have an average.
As parents, all we want is to see a smile back on his face.
Thank you.
***Update December 20th, 2018 By Jason Philip AKA Daddy***
From my entire family, I sincerely thank everyone who has supported; friends, coworkers, family and even strangers thank you for all of your support.
We have had to change Josiah's appointment since we did not have everything prepared, after informing the Mayo Clinic we were given a new appointment date of 9th January 2019, a bit far but once they get their US Visas I am going to ask for an earlier appointment.
Everyone has been pitching in to help, my sister has taken up the mantel of fundraising director and we have been hosting fortnightly BBQ's which have been a success, thanks to all of the folks who have assisted on this.
Its nerve wrecking when I try to function normally, looking every minute at my phone, thinking that every call from home carries bad news, its wrong of me to think that way but even though I am a dad underneath it all I'm only human, sadly we had one episode of this when one of Josiah's mouth ulcers got infected and prevented him from closing his mouth, after days of constant drooling and us having to feed him liquids with a spoon he was getting dehydrated and I had to rush him to A&E at the hospital.
When the A&E doctor on call saw Josiah's medical file he was honest enough to tell my wife and I that he is just going to treat the dehydration and stabilize him. A CBC was done there and the results reminded us in black and white the urgency of getting Josiah better; in the past, CBC reports his neutrophil count was around 0.26 to 0.23, this time the machines that did the test read 0.00
After numerous attempts to request an expiated date for my wife (Zuren) and son (Josiah) US Visa appointment, they finally had the interview at the consulate yesterday (19 Dec) with success, proving once again the power of prayer.
Not being the holder of a US Social Security Number I have asked Josiah's Godmother, Joey Floyd who lives in the US to accept the withdrawal of this Gofundme campaign (that's why it says to the top "on behalf of Joey Floyd) who will pass it onto us when we got to the USA.
We are not even there yet and the expenses have started, I booked an Air BnB that is 7 mins walk from the Mayo Clinic, I have looked at flights but have not booked anything yet and we have a bill of $1950 already showing up on Josiah's Mayo Clinic 1st doctors appointment.
***Update March 12th, 2019 By Jason Philip AKA Daddy***
As the days counted down we were all bubbling with excitement, the flight which Josiah handled a lot better than I thought together with his trusty companion Mr. Squirrel.
And before you knew it we were there, finally at the Mayo Clinic, Minnesota. Ready for answers and more so ready for a cure.
During the time that we spent there everything was done from scratch from courteous and professional staff, within two days of starting medication Josiah was able to sleep for the entire night, started playing and eating on his own again so much so that we had to utilize our extensive knowledge of "backyard engineering" to construct a car track, parking garage with rooftop heliport to engage Josiah's returning strength.
We also started seeing that Trillion dollar smile of his again.
Fast Forward to today after having the proverbial medical book thrown at us with everything down to Auto-inflammatory Syndromes Panel for Genetic Auto Immune illness which proved negative we left the Mayo Clinic with Josiah being diagnosed with:
1, High Inflammatory Markers in his blood which caused arthritis-like pain in his joints that kept him from sleeping for four months now resolved.
2, Anemia which is to date back to normal levels.
3, Neutropenia, is still ongoing followup blood work is closely monitored by his pediatrician and his team of doctors at the Mayo Clinic.
4, Paracoccidioidomycosis, a rare fungus that is attacking his body, this test is still pending as a blood sample had to be sent to the Center of Disease Control for identification.
Even though he is still neutropenic because most of the other symptoms that were affecting him have subsided for now he can enjoy a somewhat normal life again with control to the types of environment that he is exposed to.
We have to return to the Mayo Clinic in six months for a medical review or even before if the results from the Center for Disease Control come back positive for Paracoccidioidomycosis.
For now, we wait with a positive mindset and continuous prayer that we can give names to what has been affecting his little body for all this time.
Thank you again, everyone, who has supported us on this journey.
Thanks to these guys who created a really outstanding medical ecosystem (The Mayo brothers, founders of the Mayo Clinic).
***Update May 10th, 2019 By Zuren Philip AKA Mommy***
Josiah blood work relating to his immune system has not improved since leaving the Mayo Clinic, his mouth ulcers and sleepless nights had also returned. We were asked to bring him for a medical review ASAP.
He arrived back in Minnesota on the 24th April 2019 and has been there to date.
On the 26th April 2019, Josiah had to redo a Bone Marrow Biopsy to get an idea of what is going on in there presently, this was a success but one day after Josiah got fevers and was admitted to the Mayo Clinic's St. Mary's Hospital with a lung infection. He spent four days there before fighting it off with the assistance of G-CSF injections which bosted his bone marrow's ability to produce Neutrophils. The day he was discharged however he contracted C. difficile infection in his colon which has him with a hive like rash around his anus and most likely his rectum; he also complains about tummy pains most likely this is associated with this infection.
The Bone Marrow did not show any signs of cancer but confirmed that Josiah has Neutropenia, a rare 1-1,000,000 type of blood disorders, the type is yet to be determined but the treatment regime is more or less the same, daily injections of G-CSF which will help his bone marrow make enough neutrophils to enter his bloodstream.
Neupogen (Filgrastim) G-CSF (Granulocyte - colony stimulating factor ) the life-saving drug that Josiah needs cost about $300 USD per injection, per day and I have been trying to work with the insurance company to cover the cost of it in the interim Josiah's doctor at the Mayo Clinic is trying to arrange for him to be on The Severe Chronic Neutropenia International Registry which will allow him to have the injections for free, only thing is that it has to be delivered to a United States postal address.
The duration of the daily injections is one year for now but the doctor advised us that there is a possibility that it could be life long.
Josiah and I have arranged some accommodation at the Ronald McDonald House where they are currently staying which is a peace of mind not having to worry about hotel fees which I had to pay on a daily basis.
I received the first package of Neupogen injections for Josiah yesterday and I have started learning to administer the shots myself, its the time of the day that I fear the most, part of me can't wrap my mind around injecting my son daily but another part knows that the other options are not to his advantage.
It's difficult to fool Josiah now about what's going on, he knows that when he enters the elevator at the Mayo building that someone is going to stick a needle in his arm. Outside of the daily injections, he has to have CBC's done twice weekly to track his Neutrophil levels to make any modifications to the dosage of the medication and he hates it. He gets angry and has the look in his eyes as though he is saying "mommy please let them stop, it hurts" I hope that one day he can understand that it was all in his best interest and if I could take it away from him I would in an instant.
Daddy could not make the trip this time, so, for now, we wait on additional genetic test results for ALPS (Autoimmune Lymphoproliferative Syndrome) as well as a test result for ELANE-Related Neutropenia
***Update June 14th, 2019 By Zuren Philip AKA Mommy***
The Doctors have been struggling to get the right dosage for the G-CSF injections but the important thing is that he is getting the best care he can, he has contracted another infection "Clostridium difficile" which affects his colon, to date this is his third bout of this infection and it has him restless especially at night.
The Ronald McDonald House has a visit from Subaru and the Leukemia & Lymphoma Society where they interviewed me about Josiah's illness, this is the link to the article > https://www.kimt.com/content/news/cancerpatientdeliveries-511282081.html
***PLEASE NOTE THAT DONATIONS ARE IN U.S. DOLLARS ***
Organizer and beneficiary
Jason Philip
Organizer
Joey Floyd
Beneficiary