Save Baby Alena - Fighting Brain Cancer
Donation protected
Save Baby Alena - Fighting Brain Cancer
God makes miracles. We just have to believe.
UPDATE #5
Update August 19, 2018
Thanks be to God! Alena’s tumor CONTINUES to SHRINK!!!! Based on latest images 8/13/19.
Early this month, Alena was admitted to the hospital for a week and a half. Her sodium level elevated significantly overnight (from 148-168) and kept rising. This put her in the PICU to closely monitor her sodium levels and water diabetes. Once levels were stabilized, she then had on/off fevers with a high heart rate. All tests - blood cultures, nasal/mouth swabs, ua, etc were negative & xray, ultrasound, mri were norma. The doctors couldn’t figure out the cause. After a few days, her high heart rate and fevers somehow just went away. We were finally discharged from Texas Children’s Hospital.
Alena is better than ever. In July, we got to complete her baptism ceremony and celebrate her FIRST birthday!
We’ve had such amazing progress these past few weeks.
Alena...
- Drinks fluids from bottle/sippy cup
- No longer needs NG tube (yellow tube in nose that goes to stomach) however, we do keep it in as she practices taking meds by mouth.
- Sits up and can balance herself (even in the stroller!)
- Plays sitting up, takes toys out of toy bin and bangs toys together
- Stands up for 2 MINUTES+ (used to be only 10 seconds)
- Has 2 teeth breaking through gums
We practice with her everyday but patience is key. We work at her pace and do as much as she is comfortable with. The treatment leaves her more on the tired side, but Alena is still able to hit these important milestones. Words just can’t describe how happy and blessed we are as parents for such a STRONG baby. With all the bumps that she’s had in her first year of life, this baby doesn’t give up! Each day begins and ends with the sweetest smile in the world!
Thank you all for your continued love and support! We are grateful to have such kind and caring people in our lives to help us through this tough journey. We can’t fight this battle without you.
Please check out the new photos <3
Ashley & Freddy
UPDATE #4
June 28, 2019
We are happy to share that Alena’s tumor is SHRINKING!
After 10 days of antibiotics in May, we restarted Alena’s full treatment on May 15, 2019. It consists of:
Dr. Burzynski’s Antineoplaston IV infusion
Lorbrena pill crushed given thru NG tube
Sprycel pill crushed given thru NG tube
Afinitor pill crushed given thru NG tube
Votrient pill crushed given thru NG tube
Avastin IV infusion once every 2 weeks
June 8th was her emergency MRI at the hospital which showed that the tumor has decreased. This means that with just 20 days of full treatment, the tumor is responding.
Our week long stay at the hospital was to closely monitor Alena’s sodium level with the new lowered dose of DDAVP. This medicine is specifically for her diabetes insipidus “water diabetes”. We continue to monitor sodium, potassium, and hemoglobin levels are in normal range.
Alena has shown improvements with her social skills. If you talk to her, she responds back with baby babble. Sometimes says Hi or waves her hand/fingers :) Other words are Ma, Pa, Mom, And Ow. Alena is definitely longer now looking more like a toddler each day.
The next MRI is scheduled at the end of July.
Again, thank you for your continued support and prayers!!!!
Love,
Ashley, Freddy and Alena
**UPDATE #3***
June 10, 2019
Update from Freddy and Ashley:
Hi Everyone, Apologies for the late delay as we have been at the Texas Children's Hospital monitoring Alena's sodium levels. Alena's sodium level dropped dramatically from 151-125. It should never get that low. We are also trying to look for an I-Stat Blood Analyzer machine so we can closely monitor her sodium level at any given time. IF ANYONE KNOWS OF A PLACE TO GET IT FOR A FAIRLY CHEAP PRICE, PLEASE LET US KNOW.
Sometimes life gives you obstacles. Obstacles that may seem unfair or too extreme. But you are given choices. Break through the obstacles or let the obstacles break you.....and most importantly, LOVE overcomes obstacles.
With this update, we are also asking for more of your support and prayers more than ever, as we are soon to find out at her next MRI Alena's progress, which we will update again as soon as we receive it from her Doctors. Positive sign is that every time we speak to her Doctors, she is responding well to treatment!!!
But we can't do this alone and we would still like to push for us to reach the gofundme goal. Please help us to spread the word!! We really appreciate it and forever grateful!
Here is additional updates of Alena that Freddy and I would like to share:
5/3/19 ER for portacath issue
5/4/19 antibiotics for 10 days (treatment paused)
5/15/19 full treatment restart
6/7/19 ER for sodium levels (inpatient)
After her brain surgery in December 2018, she had a condition of Diabetes Insipidus also known as “water diabetes”. Alena lacks a hormone (antidiuretic) that helps kidneys keep the correct amount of water in the body. The medicine for this is given every 12 hours (morning and night). As of May 30, 2019 til now, she no longer needed the morning dose. This tells us that Alena’s body is changing and now we are inpatient at the hospital finding the right dose. It has been lowered. Her condition of water diabetes can go away naturally as she progresses. The sodium levels are very important with this condition and it’s checked weekly.
We love you all and we can't wait to come home soon!!
Freddy, Ashley and Baby Alena
**UPDATE #2- 05/03/2019**
2/11/19 - Last MRI in California
2/28/19 - Partial treatment start
4/22/19 - Full treatment start
4/30/19 - MRI in Texas
This month we received Alena’s final medication to complete her FULL treatment plan. The process of applying for medications and waiting for approvals then shipment issues. It just took us a while to get them, but glad we finally have them all. We also had a small set back this month. The port, which is connected to her central vein, was leaking out her medicine. We took her to the emergency room and thought there was an issue with the port itself. The X-ray showed that the port is in its proper place and working fine. Alena needed a longer needle to reach the port inside her chest, as she’s still a growing baby. The night it leaked and some days after was extremely hard for us. Alena wasn’t doing well and looked like she was having a lot of pain. With patience and holding ourselves together, she’s coming back to her normal self.
Alena began her treatment in Texas 17 days after the last MRI at Lucile Packard Hospital. Full treatment began almost a week ago. We just received the latest MRI results on 04/30/2019 and although the results was not the greatest results, it still gives us a lot of hope that Alena will get through this. The tumor grew slightly bigger. Based on images, doctor said only 40% of tumor is active cancer cells. The remaining is blood particles that could be from previous surgery, pressure in the brain, etc. With her full treatment now in place , we know that it will take some time for it to take affect. Allowing time, in general, because her cancer is the most aggressive.
The recent results will not bring us down! EVERYDAY, we see our baby looking so much better than when she was in-patient at the hospital. Alena recently started to put her thumb and fingers in her mouth. Grabbing her spoon with purée and putting it to her mouth. She’s remembering and learning so much every minute! These little milestones is so important to us and what we live for that each day.....especially her contagious smile, or when she screams at Freddy when he's bothering her hahaha! It makes us happy to see other people talk to her and she gives them back a smile, laugh, or even a little scream. There are definitely more good days than bad and we are seeing so much improvement!
When we are not at the hospital or clinic, we take Alena out by the lake or zoo. She likes the sounds of birds chirping and she is just so curious of everything right now and we love it!!! We’re ready for these next months to come... still fighting! Let's all fight this together for Alena!
Continue to keep us in your prayers and as always, we are so grateful that you are all a part of Alena's journey!
May is Brain Cancer Awareness Month! Don't forget to wear grey sometimes in honor of our baby girl Alena!
We love you all and we're so thankful for all of you!!!
More pics of babygirl :)
Thank you all for your love and continued support! <3
**UPDATE: 03/31/2019**
Alena has been under treatment for about 4-1/2 weeks now and has been responding well so far! Her medications consist of a continuous IV infusion over 20 hours everyday, another IV infusion once every 2 weeks, and 1 oral pill crushed and liquified daily. However, we are still pending just one other medication to complete her full treatment plan. This plan is specific for Alena, as her doctors are treating the exact gene/cell that’s causing the tumor in hopes to diminish it completely.
We are happy to share how much progress she’s made since last month. Physically, we notice her sleeping better through the nights and naps. This is important to us because she previously would have sleepless nights not settling. She wakes up smiling now and is very active and playful. Alena also wants to be carried more and moves all her coordinates properly. After her surgeries and being bedridden for the past few months, these are all great improvements! Even just looking at her eyes, we see her more alert, aware, and curious of her surroundings. Each day she surprises us with some of the things she previously used to do before she got sick - the milestones she is remembering!
In the upcoming weeks, we expect to hopefully receive her final medication to complete treatment plan and a MRI to see progress of tumor.
As this journey isn't over, we are so humbled by the outpouring LOVE and support that we continue to receive. It touches our hearts to know that our baby has so many kind and caring people that want to be involved with her fighting this cancer. We are truly blessed to have such wonderful people be a part of this difficult journey with us. We want to keep you updated with her progress so please keep checking back each month.
Also, check out the recent pictures of babygirl on the UPDATE tab to the right :)
Thank you for taking part in saving our baby girl Alena<3
Ashley and Freddy
Freddy and Ashley had no idea how much their lives would forever change on December 15th 2018…baby Alena’s mild fever became a life or death operation. The doctors discovered a massive tumor. Not only was it the size of a plum (per surgeon), but the tumor had ruptured causing a large amount of blood leaking in her brain. Ashley and Freddy did not understand how their healthy 5 month-old growing baby was one minute playing peek-a-boo, then the next in an operation room for a Craniotomy (surgery on the brain). Everything happened so fast. Ashley and Freddy were awake in a nightmare.
After her operation that removed tumor, baby Alena was still fighting this cancer. Glioblastoma Multiforme grade 4 is extremely rare for babies. It is an aggressive type of cancer with cells that attack the brain rapidly. However, babies are able to fight these cancer cells better than adults through Chemotherapy. For this reason, Doctors at Lucille Packard Children’s Hospital - Stanford first believed it was curable. This gave them hope as well as seeing all the progress with baby Alena’s recovery.
Alena spent her first Christmas, New Years, Valentines, etc in the hospital. Her parents have been and will remain by her side fighting this cancer.
By February, only 2 months after resection and chemotherapy, this tumor came back and is continuing to grow. Now the size of a golf ball. Ashley and Freddy were more devastated when the doctor asked if we wanted to go home and let nature take its course. They can no longer cure her, but only buy her a little more time of life.
Ashley and Freddy reached out and found another doctor that can treat and in hopes to cure this aggressive cancer. Through research and speaking with families that went through similar treatment with this doctor in Houston, Texas they plan give it their all. What else do they have to lose. On February 25th, they traveled to Texas where baby Alena will receive cancer treatments until stable enough to come home.
Whether this treatment cures/stabilizes her brain tumor or not, they believe they will have at least tried ALL possible options even after the doctors asked if we want to let her pass naturally. Baby Alena has not yet lived her life, but her parents will fight for that chance with all their strength. They thank God each day they have with her. Cancer is not her fault!
Loved ones are hopeful to raise enough money so Freddy and Ashley can spend their energy on their baby and not worry about the financial strain that comes with having a sick child. It is going to be an extremely long road for Alena but all of our hopes are high and hearts are strong. So let’s help Alena and her family make this unfathomable situation just a little bit easier on them. The proceeds will be spent on all treatments and medical bills.
We will make sure to post updates on Alena’s status.
Love,
#TeamAlena

God makes miracles. We just have to believe.
UPDATE #5
Update August 19, 2018
Thanks be to God! Alena’s tumor CONTINUES to SHRINK!!!! Based on latest images 8/13/19.
Early this month, Alena was admitted to the hospital for a week and a half. Her sodium level elevated significantly overnight (from 148-168) and kept rising. This put her in the PICU to closely monitor her sodium levels and water diabetes. Once levels were stabilized, she then had on/off fevers with a high heart rate. All tests - blood cultures, nasal/mouth swabs, ua, etc were negative & xray, ultrasound, mri were norma. The doctors couldn’t figure out the cause. After a few days, her high heart rate and fevers somehow just went away. We were finally discharged from Texas Children’s Hospital.
Alena is better than ever. In July, we got to complete her baptism ceremony and celebrate her FIRST birthday!
We’ve had such amazing progress these past few weeks.
Alena...
- Drinks fluids from bottle/sippy cup
- No longer needs NG tube (yellow tube in nose that goes to stomach) however, we do keep it in as she practices taking meds by mouth.
- Sits up and can balance herself (even in the stroller!)
- Plays sitting up, takes toys out of toy bin and bangs toys together
- Stands up for 2 MINUTES+ (used to be only 10 seconds)
- Has 2 teeth breaking through gums
We practice with her everyday but patience is key. We work at her pace and do as much as she is comfortable with. The treatment leaves her more on the tired side, but Alena is still able to hit these important milestones. Words just can’t describe how happy and blessed we are as parents for such a STRONG baby. With all the bumps that she’s had in her first year of life, this baby doesn’t give up! Each day begins and ends with the sweetest smile in the world!
Thank you all for your continued love and support! We are grateful to have such kind and caring people in our lives to help us through this tough journey. We can’t fight this battle without you.
Please check out the new photos <3
Ashley & Freddy
UPDATE #4
June 28, 2019
We are happy to share that Alena’s tumor is SHRINKING!
After 10 days of antibiotics in May, we restarted Alena’s full treatment on May 15, 2019. It consists of:
Dr. Burzynski’s Antineoplaston IV infusion
Lorbrena pill crushed given thru NG tube
Sprycel pill crushed given thru NG tube
Afinitor pill crushed given thru NG tube
Votrient pill crushed given thru NG tube
Avastin IV infusion once every 2 weeks
June 8th was her emergency MRI at the hospital which showed that the tumor has decreased. This means that with just 20 days of full treatment, the tumor is responding.
Our week long stay at the hospital was to closely monitor Alena’s sodium level with the new lowered dose of DDAVP. This medicine is specifically for her diabetes insipidus “water diabetes”. We continue to monitor sodium, potassium, and hemoglobin levels are in normal range.
Alena has shown improvements with her social skills. If you talk to her, she responds back with baby babble. Sometimes says Hi or waves her hand/fingers :) Other words are Ma, Pa, Mom, And Ow. Alena is definitely longer now looking more like a toddler each day.
The next MRI is scheduled at the end of July.
Again, thank you for your continued support and prayers!!!!
Love,
Ashley, Freddy and Alena
**UPDATE #3***
June 10, 2019
Update from Freddy and Ashley:
Hi Everyone, Apologies for the late delay as we have been at the Texas Children's Hospital monitoring Alena's sodium levels. Alena's sodium level dropped dramatically from 151-125. It should never get that low. We are also trying to look for an I-Stat Blood Analyzer machine so we can closely monitor her sodium level at any given time. IF ANYONE KNOWS OF A PLACE TO GET IT FOR A FAIRLY CHEAP PRICE, PLEASE LET US KNOW.
Sometimes life gives you obstacles. Obstacles that may seem unfair or too extreme. But you are given choices. Break through the obstacles or let the obstacles break you.....and most importantly, LOVE overcomes obstacles.
With this update, we are also asking for more of your support and prayers more than ever, as we are soon to find out at her next MRI Alena's progress, which we will update again as soon as we receive it from her Doctors. Positive sign is that every time we speak to her Doctors, she is responding well to treatment!!!
But we can't do this alone and we would still like to push for us to reach the gofundme goal. Please help us to spread the word!! We really appreciate it and forever grateful!
Here is additional updates of Alena that Freddy and I would like to share:
5/3/19 ER for portacath issue
5/4/19 antibiotics for 10 days (treatment paused)
5/15/19 full treatment restart
6/7/19 ER for sodium levels (inpatient)
After her brain surgery in December 2018, she had a condition of Diabetes Insipidus also known as “water diabetes”. Alena lacks a hormone (antidiuretic) that helps kidneys keep the correct amount of water in the body. The medicine for this is given every 12 hours (morning and night). As of May 30, 2019 til now, she no longer needed the morning dose. This tells us that Alena’s body is changing and now we are inpatient at the hospital finding the right dose. It has been lowered. Her condition of water diabetes can go away naturally as she progresses. The sodium levels are very important with this condition and it’s checked weekly.
We love you all and we can't wait to come home soon!!
Freddy, Ashley and Baby Alena
**UPDATE #2- 05/03/2019**
2/11/19 - Last MRI in California
2/28/19 - Partial treatment start
4/22/19 - Full treatment start
4/30/19 - MRI in Texas
This month we received Alena’s final medication to complete her FULL treatment plan. The process of applying for medications and waiting for approvals then shipment issues. It just took us a while to get them, but glad we finally have them all. We also had a small set back this month. The port, which is connected to her central vein, was leaking out her medicine. We took her to the emergency room and thought there was an issue with the port itself. The X-ray showed that the port is in its proper place and working fine. Alena needed a longer needle to reach the port inside her chest, as she’s still a growing baby. The night it leaked and some days after was extremely hard for us. Alena wasn’t doing well and looked like she was having a lot of pain. With patience and holding ourselves together, she’s coming back to her normal self.
Alena began her treatment in Texas 17 days after the last MRI at Lucile Packard Hospital. Full treatment began almost a week ago. We just received the latest MRI results on 04/30/2019 and although the results was not the greatest results, it still gives us a lot of hope that Alena will get through this. The tumor grew slightly bigger. Based on images, doctor said only 40% of tumor is active cancer cells. The remaining is blood particles that could be from previous surgery, pressure in the brain, etc. With her full treatment now in place , we know that it will take some time for it to take affect. Allowing time, in general, because her cancer is the most aggressive.
The recent results will not bring us down! EVERYDAY, we see our baby looking so much better than when she was in-patient at the hospital. Alena recently started to put her thumb and fingers in her mouth. Grabbing her spoon with purée and putting it to her mouth. She’s remembering and learning so much every minute! These little milestones is so important to us and what we live for that each day.....especially her contagious smile, or when she screams at Freddy when he's bothering her hahaha! It makes us happy to see other people talk to her and she gives them back a smile, laugh, or even a little scream. There are definitely more good days than bad and we are seeing so much improvement!
When we are not at the hospital or clinic, we take Alena out by the lake or zoo. She likes the sounds of birds chirping and she is just so curious of everything right now and we love it!!! We’re ready for these next months to come... still fighting! Let's all fight this together for Alena!
Continue to keep us in your prayers and as always, we are so grateful that you are all a part of Alena's journey!
May is Brain Cancer Awareness Month! Don't forget to wear grey sometimes in honor of our baby girl Alena!
We love you all and we're so thankful for all of you!!!
More pics of babygirl :)
Thank you all for your love and continued support! <3
**UPDATE: 03/31/2019**
Alena has been under treatment for about 4-1/2 weeks now and has been responding well so far! Her medications consist of a continuous IV infusion over 20 hours everyday, another IV infusion once every 2 weeks, and 1 oral pill crushed and liquified daily. However, we are still pending just one other medication to complete her full treatment plan. This plan is specific for Alena, as her doctors are treating the exact gene/cell that’s causing the tumor in hopes to diminish it completely.
We are happy to share how much progress she’s made since last month. Physically, we notice her sleeping better through the nights and naps. This is important to us because she previously would have sleepless nights not settling. She wakes up smiling now and is very active and playful. Alena also wants to be carried more and moves all her coordinates properly. After her surgeries and being bedridden for the past few months, these are all great improvements! Even just looking at her eyes, we see her more alert, aware, and curious of her surroundings. Each day she surprises us with some of the things she previously used to do before she got sick - the milestones she is remembering!
In the upcoming weeks, we expect to hopefully receive her final medication to complete treatment plan and a MRI to see progress of tumor.
As this journey isn't over, we are so humbled by the outpouring LOVE and support that we continue to receive. It touches our hearts to know that our baby has so many kind and caring people that want to be involved with her fighting this cancer. We are truly blessed to have such wonderful people be a part of this difficult journey with us. We want to keep you updated with her progress so please keep checking back each month.
Also, check out the recent pictures of babygirl on the UPDATE tab to the right :)
Thank you for taking part in saving our baby girl Alena<3
Ashley and Freddy
Freddy and Ashley had no idea how much their lives would forever change on December 15th 2018…baby Alena’s mild fever became a life or death operation. The doctors discovered a massive tumor. Not only was it the size of a plum (per surgeon), but the tumor had ruptured causing a large amount of blood leaking in her brain. Ashley and Freddy did not understand how their healthy 5 month-old growing baby was one minute playing peek-a-boo, then the next in an operation room for a Craniotomy (surgery on the brain). Everything happened so fast. Ashley and Freddy were awake in a nightmare.
After her operation that removed tumor, baby Alena was still fighting this cancer. Glioblastoma Multiforme grade 4 is extremely rare for babies. It is an aggressive type of cancer with cells that attack the brain rapidly. However, babies are able to fight these cancer cells better than adults through Chemotherapy. For this reason, Doctors at Lucille Packard Children’s Hospital - Stanford first believed it was curable. This gave them hope as well as seeing all the progress with baby Alena’s recovery.
Alena spent her first Christmas, New Years, Valentines, etc in the hospital. Her parents have been and will remain by her side fighting this cancer.
By February, only 2 months after resection and chemotherapy, this tumor came back and is continuing to grow. Now the size of a golf ball. Ashley and Freddy were more devastated when the doctor asked if we wanted to go home and let nature take its course. They can no longer cure her, but only buy her a little more time of life.
Ashley and Freddy reached out and found another doctor that can treat and in hopes to cure this aggressive cancer. Through research and speaking with families that went through similar treatment with this doctor in Houston, Texas they plan give it their all. What else do they have to lose. On February 25th, they traveled to Texas where baby Alena will receive cancer treatments until stable enough to come home.
Whether this treatment cures/stabilizes her brain tumor or not, they believe they will have at least tried ALL possible options even after the doctors asked if we want to let her pass naturally. Baby Alena has not yet lived her life, but her parents will fight for that chance with all their strength. They thank God each day they have with her. Cancer is not her fault!
Loved ones are hopeful to raise enough money so Freddy and Ashley can spend their energy on their baby and not worry about the financial strain that comes with having a sick child. It is going to be an extremely long road for Alena but all of our hopes are high and hearts are strong. So let’s help Alena and her family make this unfathomable situation just a little bit easier on them. The proceeds will be spent on all treatments and medical bills.
We will make sure to post updates on Alena’s status.
Love,
#TeamAlena
Organizer and beneficiary
Team Alena
Organizer
South San Francisco, CA
Ashley Cosino
Beneficiary