Isabel Anderson

Help fund a cure for DIPG!
  • My Goal:
  • $5,000
  • Raised So Far:
  • $2,940
  • # of Donations:
  • 21
$2940 of $5000 goal
+
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This is Jonas, Isabel’s dad. I’m writing this so that anyone who wants to understand our journey can see what we’ve been through during the last 7 months. 

In April of 2014, Isabel was complaining about double vision. At this time, there were no noticeable signs of eye strain or being cross-eyed, but we took her to the optometrist anyway. After 3 optometrists that week couldn’t figure out what was going on with her, we ended up at an opthamologist. The opthamologist asked for an MRI. We obliged. 

After her MRI, Isabel was still looking and acting normal, and attending school. My wife and I received a call from the opthamologist while we were at breakfast, asking for another MRI because they had ‘found something’. We weren’t sure what to make of this, but we took her back to Valley Children’s Hospital for another MRI, this time with sedation. While she was sedated and getting her MRI, we were sent to the oncology ward. At this point, no one had said the word ‘cancer’ or ‘tumor’ or even ‘brain’. As we walked back to meet the doctor, I thought, “Man, there’s a lot of pictures of bald children here for a kid with an eye problem.” 

The doctor prefaced his talk with us by saying, “When I am done, you will be the saddest parents in the world.” He proceeded to tell us that Isabel, our healthy, happy, active daughter had terminal, inoperable brain cancer. He called the light area of her MRI a tumor called ‘DIPG’ or diffuse intrinsic pontine glioma. He told us she had four months to live if we did nothing, and about a year if we did ‘palliative radiation’. My wife told the doctor that Isabel would be healed by God. The doctor said, “That’s very nice, it’s good to have a positive outlook on these things,” to which my wife said, “NO, SHE’S GOING TO BE HEALED.” This conversation went on while I went to get Isabel. Already, after the MRI, she was beginning to have noticeable weakness in the right arm and right leg. 

The following morning, she was dragging her right foot as she walked down the hall. Her left eye had started to drift inward. Her smile began to droop a little bit, and Jennifer and I started her on the steroids the doctor at VCH had prescribed us. It felt like everything we did made her condition worse. The steroid was supposed to improve her condition, it did nothing but make her really hungry. Because of the steroid making her hungry all the time and the tumor making it impossible for her to be active like she had been before (she could now barely walk unassisted, much less run or ride a bike), Isabel put on about 25 pounds to her small frame in a matter of three months. 

We visited the hospitals at UCSF and Stanford, and got accepted to the clinical trial at Stanford. UCSF wanted to dive right in with a biopsy and a cocktail of 4 different types of chemotherapy. Stanford saw the MRI and wanted to wait, because there was a possibility that the tumor might be something other than what we initially thought. We waited for months, all the time Isabel’s condition gradually getting worse, putting on more weight, losing the ability to walk, speak, smile, swallow and even breathe at times. 

There would be times when she would show mild improvement for a little while, and then down again. In May, about 3 weeks after the diagnosis, Isabel’s breathing became labored, like all the time. It sounded like she just finished running a marathon when she was just sitting there on the couch. In a panic, we called the doctors at Stanford, her pediatrician, Valley Children’s Hospital, and received a prescription for oxygen, a few different inhalers, and a breathing treatment. Nothing worked. It was terrifying. We ended up putting her on a slightly higher steroid dose and things settled for a while. 

Then there was ‘the cough’. A cough so horrendous and ever-present that it got its own name, like Voldemort. It stemmed from her inability to breathe and swallow. Saliva would build up and rest on her vocal cords. When enough built up, a violent cough would wake up every one in the house, and she couldn’t stop herself from coughing. She would draw in air hard, trying to breathe and end up swallowing the air, creating these horrible, uncontrollable burps. The average coughing spasm would last about 5 minutes. There were nights that I slept on the floor in her room. 

Eventually, after watching the tumor for a while and not seeing any improvement or motion, we opted for a biopsy in July. The biopsy revealed a grade 3 anaplastic astrocytoma, a member of the DIPG family. There is a blood vessel, a big one, that goes to the brain right next to the brain stem. Normally, with this type of cancer, that blood vessel gets surrounded by tumor material. In Isabel’s case, her tumor was ‘atypical’... it had barely moved since the first day we got the diagnosis, and it had not surrounded the blood vessel. That was the reason we were waiting, and we couldn’t wait any more. 

After the biopsy, we had a plan. 6 weeks of radiation to reduce the size of the tumor coupled with a new experimental medication called ABT-888, follow up with Temozolomide and ABT-888 again. 

The thing about this type of tumor is that it responds to radiation and chemo… for a while. Then it comes back and kills the child. If you ever need a good cry, google DIPG and read the hundreds of parents who lost their children to this monster. It’s awful. The tumor expands in the brain stem and the child loses the ability to speak, breathe, swallow, walk, smile all while the intelligence of the child is untouched. This means the child gets to watch themselves die and be helpless to do anything about it. ABT-888 is a PARP inhibitor, which means it’s not a traditional chemo drug. It does not kill cells, it prevents cells with high PARP counts from rebuilding themselves. Our healing may come slower, but it should be more permanent, if this medicine does what it is supposed to do. 

We finished radiation on September 5th. There are still no predictable days. It’s always a crap shoot. At the time of this writing (November 11, 2014) Isabel is alive and sitting in front of me. We have completed 2 courses of chemo and are continuing to work the physical therapy and occupational therapy to help her walk and regain the use of her hand. Our clinical trial is 3 years long. Most of the kids that get the cancer Isabel has die within one year of diagnosis. The plan, for us, is to be cancer free at 3 years and go on with a somewhat normalized life. People have beaten this cancer. We’ve corresponded with survivors. It can be done. 

If you are not in a position to help financially, that's OK... our God has unlimited resources. We would simply ask that you pray for healing and restoration in Isabel's body, and pray that the resources would come through divine channels. Prayer works!

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The Cause
Isabel Anderson is fundraising for General Fundraiser benefiting Lucile Packard Foundation for Children's Health.

This is Jonas, Isabel’s dad. I’m writing this so that anyone who wants to understand our journey can see what we’ve been through during the last 7 months. 

In April of 2014, Isabel was complaining about double vision. At this time, there were no noticeable signs of eye strain or being cross-eyed, but we took her to the optometrist anyway. After 3 optometrists that week couldn’t figure out what was going on with her, we ended up at an opthamologist. The opthamologist asked for an MRI. We obliged. 

After her MRI, Isabel was still looking and acting normal, and attending school. My wife and I received a call from the opthamologist while we were at breakfast, asking for another MRI because they had ‘found something’. We weren’t sure what to make of this, but we took her back to Valley Children’s Hospital for another MRI, this time with sedation. While she was sedated and getting her MRI, we were sent to the oncology ward. At this point, no one had said the word ‘cancer’ or ‘tumor’ or even ‘brain’. As we walked back to meet the doctor, I thought, “Man, there’s a lot of pictures of bald children here for a kid with an eye problem.” 

The doctor prefaced his talk with us by saying, “When I am done, you will be the saddest parents in the world.” He proceeded to tell us that Isabel, our healthy, happy, active daughter had terminal, inoperable brain cancer. He called the light area of her MRI a tumor called ‘DIPG’ or diffuse intrinsic pontine glioma. He told us she had four months to live if we did nothing, and about a year if we did ‘palliative radiation’. My wife told the doctor that Isabel would be healed by God. The doctor said, “That’s very nice, it’s good to have a positive outlook on these things,” to which my wife said, “NO, SHE’S GOING TO BE HEALED.” This conversation went on while I went to get Isabel. Already, after the MRI, she was beginning to have noticeable weakness in the right arm and right leg. 

The following morning, she was dragging her right foot as she walked down the hall. Her left eye had started to drift inward. Her smile began to droop a little bit, and Jennifer and I started her on the steroids the doctor at VCH had prescribed us. It felt like everything we did made her condition worse. The steroid was supposed to improve her condition, it did nothing but make her really hungry. Because of the steroid making her hungry all the time and the tumor making it impossible for her to be active like she had been before (she could now barely walk unassisted, much less run or ride a bike), Isabel put on about 25 pounds to her small frame in a matter of three months. 

We visited the hospitals at UCSF and Stanford, and got accepted to the clinical trial at Stanford. UCSF wanted to dive right in with a biopsy and a cocktail of 4 different types of chemotherapy. Stanford saw the MRI and wanted to wait, because there was a possibility that the tumor might be something other than what we initially thought. We waited for months, all the time Isabel’s condition gradually getting worse, putting on more weight, losing the ability to walk, speak, smile, swallow and even breathe at times. 

There would be times when she would show mild improvement for a little while, and then down again. In May, about 3 weeks after the diagnosis, Isabel’s breathing became labored, like all the time. It sounded like she just finished running a marathon when she was just sitting there on the couch. In a panic, we called the doctors at Stanford, her pediatrician, Valley Children’s Hospital, and received a prescription for oxygen, a few different inhalers, and a breathing treatment. Nothing worked. It was terrifying. We ended up putting her on a slightly higher steroid dose and things settled for a while. 

Then there was ‘the cough’. A cough so horrendous and ever-present that it got its own name, like Voldemort. It stemmed from her inability to breathe and swallow. Saliva would build up and rest on her vocal cords. When enough built up, a violent cough would wake up every one in the house, and she couldn’t stop herself from coughing. She would draw in air hard, trying to breathe and end up swallowing the air, creating these horrible, uncontrollable burps. The average coughing spasm would last about 5 minutes. There were nights that I slept on the floor in her room. 

Eventually, after watching the tumor for a while and not seeing any improvement or motion, we opted for a biopsy in July. The biopsy revealed a grade 3 anaplastic astrocytoma, a member of the DIPG family. There is a blood vessel, a big one, that goes to the brain right next to the brain stem. Normally, with this type of cancer, that blood vessel gets surrounded by tumor material. In Isabel’s case, her tumor was ‘atypical’... it had barely moved since the first day we got the diagnosis, and it had not surrounded the blood vessel. That was the reason we were waiting, and we couldn’t wait any more. 

After the biopsy, we had a plan. 6 weeks of radiation to reduce the size of the tumor coupled with a new experimental medication called ABT-888, follow up with Temozolomide and ABT-888 again. 

The thing about this type of tumor is that it responds to radiation and chemo… for a while. Then it comes back and kills the child. If you ever need a good cry, google DIPG and read the hundreds of parents who lost their children to this monster. It’s awful. The tumor expands in the brain stem and the child loses the ability to speak, breathe, swallow, walk, smile all while the intelligence of the child is untouched. This means the child gets to watch themselves die and be helpless to do anything about it. ABT-888 is a PARP inhibitor, which means it’s not a traditional chemo drug. It does not kill cells, it prevents cells with high PARP counts from rebuilding themselves. Our healing may come slower, but it should be more permanent, if this medicine does what it is supposed to do. 

We finished radiation on September 5th. There are still no predictable days. It’s always a crap shoot. At the time of this writing (November 11, 2014) Isabel is alive and sitting in front of me. We have completed 2 courses of chemo and are continuing to work the physical therapy and occupational therapy to help her walk and regain the use of her hand. Our clinical trial is 3 years long. Most of the kids that get the cancer Isabel has die within one year of diagnosis. The plan, for us, is to be cancer free at 3 years and go on with a somewhat normalized life. People have beaten this cancer. We’ve corresponded with survivors. It can be done. 

If you are not in a position to help financially, that's OK... our God has unlimited resources. We would simply ask that you pray for healing and restoration in Isabel's body, and pray that the resources would come through divine channels. Prayer works!

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General Fundraiser

Hello friends! Welcome to my fundraising page benefiting Lucile Packard Children's Hospital Stanford

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Lucile Packard Foundation for Children's Health

Thanks to our community’s generous support, Lucile Packard Children’s Hospital Stanford has grow...

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