Nia's Medical Fund
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On June 5, 2015, our 3 year old daughter Nia was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) which is rare and highly aggressive tumor in the pons of the brainstem. It's a large tumor that filled the pons. It is inoperable and difficult to treat. We’ve been in the hospital since June 5th, got discharged once but we were back at the hospital right the next day after our trip to University of Michigan (U of M) for second opinion. Which they only confirmed the diagnoses of the doctors in Bronson Hospital. St. Jude Hospital in TN, Lurie's Cancer Center in Chicago had also been consulted. Their research studies are only good after radiation treatment.
Nia's port placement and g-tube was scheduled on 06/11/15 (a day before her 4th birthday) but everything was stopped when her tumor end up hemorrhaging 30 minutes before the scheduled time. Therefore, the treatment was also put on hold.
She celebrated her 4th birthday 06/12/15 at the hospital with a few friends while we as parents were afraid of losing her that day. Instead, Nia our little fighter, started to show little improvement everyday which made the doctor feel confident enough to move ahead the radiation treatment after few days as long as she didn't need to be sedated as her heart rate was on the low side.
On 6/17/15 we took baby steps; we first did the PICC (Peripherally Inserted Central Catheter) with minimal sedation. The placement went well and Nia did great. So we went ahead with radiation simulation, all was great. So we did her first radiation treatment at low dose.
She had been responding well with the treatment though she has not been sleeping well. On 06/20/15, the dosage of steroid was reduced, and morphine was given only as needed, meds for secretion was stopped. The next day, she was able to eat jello! Daddy's wish for father's day was fulfilled! We had been trying to get her to eat baby food since, with the help of Speech Therapist. She eventually was able to eat tablespoon of baby food on 6/24/15. It was a task for her but she did it.
However, the next day 06/25/15 we noticed a step-back, she was not able to swallow again the baby food like she had been doing the last couple of days and with occasional crying which she had not been doing. CT was ordered. It shows no more "new" bleeding. However, the previous hemorrhage is still bleeding causing a lot of pressure in her head. Hydrocephalus is beginning to form. The g-tube was supposedly scheduled today 06/26/15 was cancelled because of the step-back, anesthesia would not be in her best interest.
Our concern arises but after talking to the Radiologist/Oncologist she made us comfortable to keep moving with the treatment, as she noted, they had been treating patients with similar concern.
On 06/26/15, Nia completed 8 radiation treatments without being sedated. She is such a trooper! Our goal is to go home sometime soon. The NG-tube was placed instead. Once we had that going, she took a nap for over an hour, which she has not done in days. It must have felt good to finally have some food in her tummy after almost 3 weeks of no food.
We were discharged on 06/27/15. It was nice to be home, feeling the sense of normality, playing with both Nia and Noah at the same time. All 4 of us are able to sleep in the same bed, it was nice. But it is also hard as Nia is not the same person who used make a lot of noise and talking non-stop, spreading toys all over the house. Now there’s only less than half of toys are spread as Noah isn’t good at it yet. We feel our broken hearts constantly.
We have hospice assisting us in caring for Nia at home. They will visit up to 3 times a week if needed. But we are doing good feeding Nia and giving her medications thru her NG tube.
Today we transported Nia back and forth to Cancer Center for her second week of radiation treatment. Nia did well in the car and the treatment. It is 5 days a week Monday thru Friday so we are looking at July 29, 2015 would be the last day of treatment.
I understand the Lord has plans for us but I don’t know what His plans are. I only know that we want Nia to get better and be herself again. We are continuing to pray for miracles.
How did we find out about Nia’s brain tumor? I will start from present and going back to the past:
On June 5th, Nia was running and fell at the daycare; hitting her head on the floor leaving the big bump on her head (bukol). I took her to her doctor and doctor advised to take Nia to ER by ambulance just in case something happen in the car, I’ll have help. We made it to ER and the CT scan was done. The ER doctor sat down and asked us what’s been going on with Nia at home. And more doctors were marching in to our room which gave me that sick feeling to my stomach wondering why there are more doctors joining in.
What we noticed at home in the past couple of weeks before she fell:
We started noticing Nia with slur speech which was surprising to us because she always speak very clearly even at very young age; 1.5 years old. And we started noticing her tripping which is also a surprise because she always has good balance. We noticed these 2 things more and more every day that a couple of times, she started falling off the chair when she attempted to get off. And it seems that she also has hard time understanding, the listening to mommy and daddy was kind of out the window. And when we asked her, she would look at me with the look on her face “I don’t know why I’m acting like this”. And we also started noticing when she eats especially soup, she starts to cough. Again, we don’t understand why. The evening of June 4th, we had dinner at a restaurant. We ordered soup, she was eating and she kept coughing. And she has the look on her face like, “I don’t know why I’m coughing” because at this point when we ask her, she just look at us, though she looked pretty tired but she normally doesn’t slow down until bed time, she sleeps at around 10:30pm doesn’t matter how early we put her to bed.
That morning of June 5th, getting ready to go to daycare and work, we couldn’t get things going. She couldn’t decide what to wear and when I chose for her she doesn’t like my pick. I was in tears asking her why she has been acting like that, getting worse every day. She answered, “I don’t know, Mommy”.
When we got to daycare, I asked her teacher if she noticed something different about Nia’s attitude or behavior. The teacher noted that Nia has been a little sensitive in the last month and more so in the last 2 weeks, though she listens to her teacher(s), Nia is a good kid.
When the daycare called me that morning 2 hours after I dropped her off, telling me she fell, I wasn't too surprised.
So the ER doctor then told us that Nia has a large mass in her brain that is a concern to them. And the change of behavior was symptoms of the brain tumor. Nia was admitted that afternoon and MRI was done in the evening that confirmed the concern of the CT scan result.
Mommy’s gut feeling:
The doctors said they don’t know when the tumor mutated and definitely don’t know what caused it.
Nia is a bright, smart, talkative, active, independent girl with the BIGGEST heart, wonderful big sister! Health wise, she’s healthy and healthy eater. She hardly eats any junk/pre-made/ready-made foods. She eats fresh fruits and vegetable that is freshly cooked almost every night. But none of these made a difference.
The doctor also noted have we found out Nia’s tumor a month ago, it wouldn’t make a difference.
Mommy’s non-medical background, just gut feeling that this tumor may have started before she was 2 years old:
One beautiful morning on spring time, I was getting Nia ready to go to daycare. I asked her to bend over; she did but started screaming in pain. I asked her what happened, she said her head hurt. I asked where in her head, she pointed the back of her head. I had that unpleasant feeling in my stomach wondering why it’s on the back of her. If anything it would be on her temple though she wasn’t sick either like maybe cold and cough. That week she complained twice, when I asked, she pointed to the same spot, back of her head. I called her doctor’s office and spoke with the nurse. The nurse said if Nia wasn’t consistently complaining, there’s nothing they can do. Of course Nia stopped complaining until beginning of this year.
January 2015 (late December 2014) she started complaining of headache.. Pointing to the same spot she pointed out before she was 2 years old. Again that unpleasant feeling in my stomach wondering… Nia complained enough that I took her to see the doctor. The doctor’s advice is that we do a headache diary to see how consistent she is or if there’s particular time. The daycare staffs helped noting things down. In the middle of this headache diary, Nia stopped complaining. I was thinking maybe because she’s been trying to drink more water throughout the day as I asked her to do so. I never followed up with the doctor and not a complain of headache from Nia either. But instead we saw those other behavioral change.
I wrote this all down to help me vent it out and also maybe help others to be aware of the symptoms that is diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma). I certainly don’t wish for any parents to have to go through this complete nightmare let alone a child who is just starting with their life, fighting to live. We have heard of brain tumor but nothing like DIPG. It is rare and highly aggressive tumor and difficult to treat. Unfortunately, there are 200 (to 300) children affected a year in United States.
We still wish to wake up from this nightmare. Lord, please always be with us during this most difficult time especially Nia, we pray that you heal Nia.
We continue to thank everyone who gives their loving support and prayers. All the help that everyone is doing, we greatly appreciate it.
Nia's port placement and g-tube was scheduled on 06/11/15 (a day before her 4th birthday) but everything was stopped when her tumor end up hemorrhaging 30 minutes before the scheduled time. Therefore, the treatment was also put on hold.
She celebrated her 4th birthday 06/12/15 at the hospital with a few friends while we as parents were afraid of losing her that day. Instead, Nia our little fighter, started to show little improvement everyday which made the doctor feel confident enough to move ahead the radiation treatment after few days as long as she didn't need to be sedated as her heart rate was on the low side.
On 6/17/15 we took baby steps; we first did the PICC (Peripherally Inserted Central Catheter) with minimal sedation. The placement went well and Nia did great. So we went ahead with radiation simulation, all was great. So we did her first radiation treatment at low dose.
She had been responding well with the treatment though she has not been sleeping well. On 06/20/15, the dosage of steroid was reduced, and morphine was given only as needed, meds for secretion was stopped. The next day, she was able to eat jello! Daddy's wish for father's day was fulfilled! We had been trying to get her to eat baby food since, with the help of Speech Therapist. She eventually was able to eat tablespoon of baby food on 6/24/15. It was a task for her but she did it.
However, the next day 06/25/15 we noticed a step-back, she was not able to swallow again the baby food like she had been doing the last couple of days and with occasional crying which she had not been doing. CT was ordered. It shows no more "new" bleeding. However, the previous hemorrhage is still bleeding causing a lot of pressure in her head. Hydrocephalus is beginning to form. The g-tube was supposedly scheduled today 06/26/15 was cancelled because of the step-back, anesthesia would not be in her best interest.
Our concern arises but after talking to the Radiologist/Oncologist she made us comfortable to keep moving with the treatment, as she noted, they had been treating patients with similar concern.
On 06/26/15, Nia completed 8 radiation treatments without being sedated. She is such a trooper! Our goal is to go home sometime soon. The NG-tube was placed instead. Once we had that going, she took a nap for over an hour, which she has not done in days. It must have felt good to finally have some food in her tummy after almost 3 weeks of no food.
We were discharged on 06/27/15. It was nice to be home, feeling the sense of normality, playing with both Nia and Noah at the same time. All 4 of us are able to sleep in the same bed, it was nice. But it is also hard as Nia is not the same person who used make a lot of noise and talking non-stop, spreading toys all over the house. Now there’s only less than half of toys are spread as Noah isn’t good at it yet. We feel our broken hearts constantly.
We have hospice assisting us in caring for Nia at home. They will visit up to 3 times a week if needed. But we are doing good feeding Nia and giving her medications thru her NG tube.
Today we transported Nia back and forth to Cancer Center for her second week of radiation treatment. Nia did well in the car and the treatment. It is 5 days a week Monday thru Friday so we are looking at July 29, 2015 would be the last day of treatment.
I understand the Lord has plans for us but I don’t know what His plans are. I only know that we want Nia to get better and be herself again. We are continuing to pray for miracles.
How did we find out about Nia’s brain tumor? I will start from present and going back to the past:
On June 5th, Nia was running and fell at the daycare; hitting her head on the floor leaving the big bump on her head (bukol). I took her to her doctor and doctor advised to take Nia to ER by ambulance just in case something happen in the car, I’ll have help. We made it to ER and the CT scan was done. The ER doctor sat down and asked us what’s been going on with Nia at home. And more doctors were marching in to our room which gave me that sick feeling to my stomach wondering why there are more doctors joining in.
What we noticed at home in the past couple of weeks before she fell:
We started noticing Nia with slur speech which was surprising to us because she always speak very clearly even at very young age; 1.5 years old. And we started noticing her tripping which is also a surprise because she always has good balance. We noticed these 2 things more and more every day that a couple of times, she started falling off the chair when she attempted to get off. And it seems that she also has hard time understanding, the listening to mommy and daddy was kind of out the window. And when we asked her, she would look at me with the look on her face “I don’t know why I’m acting like this”. And we also started noticing when she eats especially soup, she starts to cough. Again, we don’t understand why. The evening of June 4th, we had dinner at a restaurant. We ordered soup, she was eating and she kept coughing. And she has the look on her face like, “I don’t know why I’m coughing” because at this point when we ask her, she just look at us, though she looked pretty tired but she normally doesn’t slow down until bed time, she sleeps at around 10:30pm doesn’t matter how early we put her to bed.
That morning of June 5th, getting ready to go to daycare and work, we couldn’t get things going. She couldn’t decide what to wear and when I chose for her she doesn’t like my pick. I was in tears asking her why she has been acting like that, getting worse every day. She answered, “I don’t know, Mommy”.
When we got to daycare, I asked her teacher if she noticed something different about Nia’s attitude or behavior. The teacher noted that Nia has been a little sensitive in the last month and more so in the last 2 weeks, though she listens to her teacher(s), Nia is a good kid.
When the daycare called me that morning 2 hours after I dropped her off, telling me she fell, I wasn't too surprised.
So the ER doctor then told us that Nia has a large mass in her brain that is a concern to them. And the change of behavior was symptoms of the brain tumor. Nia was admitted that afternoon and MRI was done in the evening that confirmed the concern of the CT scan result.
Mommy’s gut feeling:
The doctors said they don’t know when the tumor mutated and definitely don’t know what caused it.
Nia is a bright, smart, talkative, active, independent girl with the BIGGEST heart, wonderful big sister! Health wise, she’s healthy and healthy eater. She hardly eats any junk/pre-made/ready-made foods. She eats fresh fruits and vegetable that is freshly cooked almost every night. But none of these made a difference.
The doctor also noted have we found out Nia’s tumor a month ago, it wouldn’t make a difference.
Mommy’s non-medical background, just gut feeling that this tumor may have started before she was 2 years old:
One beautiful morning on spring time, I was getting Nia ready to go to daycare. I asked her to bend over; she did but started screaming in pain. I asked her what happened, she said her head hurt. I asked where in her head, she pointed the back of her head. I had that unpleasant feeling in my stomach wondering why it’s on the back of her. If anything it would be on her temple though she wasn’t sick either like maybe cold and cough. That week she complained twice, when I asked, she pointed to the same spot, back of her head. I called her doctor’s office and spoke with the nurse. The nurse said if Nia wasn’t consistently complaining, there’s nothing they can do. Of course Nia stopped complaining until beginning of this year.
January 2015 (late December 2014) she started complaining of headache.. Pointing to the same spot she pointed out before she was 2 years old. Again that unpleasant feeling in my stomach wondering… Nia complained enough that I took her to see the doctor. The doctor’s advice is that we do a headache diary to see how consistent she is or if there’s particular time. The daycare staffs helped noting things down. In the middle of this headache diary, Nia stopped complaining. I was thinking maybe because she’s been trying to drink more water throughout the day as I asked her to do so. I never followed up with the doctor and not a complain of headache from Nia either. But instead we saw those other behavioral change.
I wrote this all down to help me vent it out and also maybe help others to be aware of the symptoms that is diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma). I certainly don’t wish for any parents to have to go through this complete nightmare let alone a child who is just starting with their life, fighting to live. We have heard of brain tumor but nothing like DIPG. It is rare and highly aggressive tumor and difficult to treat. Unfortunately, there are 200 (to 300) children affected a year in United States.
We still wish to wake up from this nightmare. Lord, please always be with us during this most difficult time especially Nia, we pray that you heal Nia.
We continue to thank everyone who gives their loving support and prayers. All the help that everyone is doing, we greatly appreciate it.
Organizer
Nils Vos
Organizer
Galesburg, MI
