This is the Voyager in action. The pediatric version apparently looks a little bit less like a halo. Simon told Vivian before she went to school today, if anyone asks about it tell them it’s a halo and if they ask what that is say it’s space age. Vivian started wearing it Sunday morning. Has not complained once about it. She is amazing. For those who missed the previous post. This in theory will stop the tumor cells from dividing and eventually kill the tumor. She is THE FIRST patient ever to use this with DIPG. It may not actually do anything. But we are praying this is an answer and a cure. It would cure not only DIPG but multiple other pediatric and adult brain tumors as well. 

Thank you for all of the prayers and support around the Voyager. We are by no means going to rest on our laurels to see if this is going to work. We are still in the process of trying to get approval from Providence Health Plan for the drug panobinostat. This has shown to at least slow progression of DIPG, where nothing else has. We have already received 2 denials, even with a letter from Dr. Michelle Monje from Stanford who leads the clinical trials for this drug. Simon will give a presentation tomorrow for the board at Providence. Please pray they will make a wise decision and accept coverage for this. We have spent hours upon hours on this. Maybe it is part of God’s plan to keep us busy and distracted. Kind of like January 31, the day before Vivian’s first MRI, she had lice! I spent the entire day doing laundry and hair treatments, left very little time to worry about her MRI the next day.

We have also submitted a request for patient support from the drug company who makes panobinostat. That has been an ongoing ordeal as well. We do not qualify for their patient assistance, but hope if Providence denies us again we could get it at least for a reduced rate. The normal price is $200,000 for her 48 week regiment. We pray at the very least this and the halo might give her more time for a pending cure for DIPG.

Someone asked me to reiterate that all money raised for the foundation is going to research. NOT for Vivian’s care. We are fortunate to be able to cover that ourselves.

Posting this prayer again.

A prayer written by my Mom. I’m praying it often.

Father in heaven we ask again today for the love of your healing hand on Vivian Rose. That you would touch these tentacles of destruction on her brain stem and cause them to recede. We ask that you call them back and cause them to wither in your hand. Drawing back like the ebb of the sea. Cut off the source of this tumor that it would choke and die, that this unruly, unwanted, unacceptable cancerous growth would be stayed by your all powerful hand. Like the fig tree that Jesus cursed, the tumor would be no more….

We pray all these things is Jesus holy and precious name.
Bea
Beatrice Plath

#vivianrosedipg #DefeatDIPG #Prayforacure #Donateforacure

Viv has a great time on our Make-A-Wish trip to Orlando. We stayed at Give Kids The World Village, a special place only Wish kids get to stay. They serve ice cream all day long!

Viv got the extra special princess treatment as a Wish kid. Anna and Elsa spent 5 minutes hanging out with just her where normally just one of the takes a picture at a time and they keep moving. Rapunzel played hide and seek with her. Thank you Walt Disney World for taking special care of these wish kids with fast passes and a special room to go rest. Viv slept for 2 hours in there one day. She was exhausted and excited the entire time.

She had a Special session with the horse trainers at GKTW as part of her wish, as she wants to be a horse trainer when she grows up.

Best seats in the house at SeaWorld for Shamu. Thank you.

Thank you Make a Wish!!!!! She loved it.

We loved seeing Vivian happy, but it is hard for Simon and I every single day knowing her diagnosis means she has less than 1% chance of surviving this. We saw all kinds of kids and thought, wow Viv looks perfectly healthy, but wouldn’t we trade this for what the other kids had. So, please continue to pray for a miracle for our girl. Pray for a cure for DIPG.

Vivian Rose Weaver Defeat DIPG Foundation

vivianrosedipg.org
#vivianrosedipg #defeatdipg #prayforacure #donateforacure

 

 

Great news today. We FINALLY got approval for the Voyager by a company named Nativis. God sent my brother David to a potential investors meeting the week after Viv was diagnosed. What they were talking about trying to cure sounded a lot like what was going on with Vivian. He let us know about the product and here we are. We have spent 6 weeks wading thru paperwork, doctors at the company, our doctors, FDA, Integrity Review Boards and they shipped it out today. It is considered for compassionate use. It is a complete experiment but with no known side effects. It is a halo Viv will wear on her head as much as possible that emits ultra-low radio frequency energy waves and in theory prevents cell division. Thank you for praying for this to go thru. Now we need the drug company or our insurance to help with getting a drug called panobinostat. It has been shown to  slow tumor progression.  Lots of prayers still. 

Many people have asked how Viv is doing. This photo is from a play date today with her entire class. If we could keep her this way forever, that would be the miracle we have been praying for. Her MRI Wednesday. showed the tumor has shrunk somewhat. This is fairly normal at this point. 99.99% of the time is comes with a vengeance. Nearly every day a child is diagnosed with the DIPG and nearly every day a child dies.

Many of you have also asked what you can do to help. The answer has simply been prayer. We still need that more than anything. But, now there is something else you can do too. More research needs to be happening. Please consider donating. All money except credit card processing fees will go to DIPG research. I encourage you to look at the website. www.vivianrosedipg.org there is great information there on DIPG. You can also go to our foundation page Vivian Rose Weaver Defeat DIPG Foundation

Thank you. We have an amazing advisory board helping is determine researchers doing to the most innovative work to find a cure. Imagine if you had a child diagnosed 3 years from now. Wouldn’t you want them to be doing everything they can right now to find a cure?!? What would that be worth to you?

I am thankful for the families who have been working tirelessly towards a cure since their children have passed. Thank you Michael Mosier Defeat DIPG Foundation and many others.

Thank you everyone for continued prayers and for those of you who have donated already. Please keep praying!!! Also, please share. Maybe with an extra note attached asking for additional support. Thank you. We know we are loved.

It’s been a while since Katie and I have updated all of you who are supporting Vivian. This morning I was texting information to my extended family and realized we needed to update everyone. So, here is where we stand today:

Vivian has completed the only standard therapy for Diffuse Intrinsic Pontine Glioma, which was 6 weeks of daily radiation therapy. She simultaneously took part in a clinical trial which was testing the combination of radiation and an experimental chemo drug. It was a challenging 6 weeks but overall she tolerated this well and since the conclusion of daily radiation/chemo her energy levels are returning and she is definitely improved. Her facial droop has mostly resolved and the eye deviation has also improved significantly. Her zest and vibrancy is back as the weight and worry of daily hospital visits has evaporated. We hadn’t really appreciated how all of that was affecting Viv, but since her last day of therapy, when she woke up knowing she wouldn’t have to do it again, she’s been alive!

Since the completion of that round of treatments Katie and I have been working hard to determine what comes next. There are no known, effective treatments moving forward, but around the country physicians and researchers are working hard to find a cure for DIPG. There are a variety of experimental treatments being tested around the country and we are spending lots of time investigating those options and trying to determine if one seems more promising than another…. then determining if Vivian qualities for the given trial. So far one company has agreed to give Vivian an unproven device she will wear on her head. In the lab and even in animals its electrical impulses prevent tumor cell division, but it’s so new there is no human data and she will be one of the first children to try it.(Thank you, Nativis, for offering this to Vivian free of charge.) We are awaiting FDA clearance for use under “compassionate use” guidelines. We are hoping to combine this device with a medication trial, but getting in touch with key researchers and clinicians is slow and trials have stringent requirements that often exclude patients. Some of the newest meds can only be dispensed if the FDA allows for compassionate use in Viv’s specific scenario because they are untested and could potentially be harmful or deadly. In these cases we need multiple physicians to write letters of support agreeing that the risk of use does not exceed the risk of alternatives or the risk of doing nothing. Given that DIPG is uniformly fatal we can make a strong case for compassionate use. It’s a slow process, but we are pushing forward and slowly making headway.

New drugs and new data are coming out all the time as teams work on this in the US and Europe. The landscape changes regularly as new information becomes available. Today I will be on the phone trying to contact researchers in Boston and in Georgia, trying to determine if Viv might be a candidate for one of two early stage drugs that have shown some promise. These drugs are so new and experimental that one has no pediatric data, the other has data from 6 children… a minuscule number of patients, but you have to start somewhere. A brand new study out of Stanford was just published, and if you are interested in reading the type of data we are pouring through I’ve include the summary at the end of this post. This is exciting information, but no human trials are active yet. We hope they are forthcoming!

So, this is where we are today. We are praying for God’s guiding hand as we seek further treatment and we continue to pray for Vivian’s healing in whatever form it comes. Vivian is doing well right now. She is happy, she remains unaware that she is bald except for the top half of her head, and although we discuss her diagnosis and consistently pray as a family for her healing she only grasps the gravity of the situation superficially. We love her immensely and are constantly amazed at her resilience, her strength and her trusting nature.

Thank you all for your continued prayers and support. We are thankful.

Diffuse intrinsic pontine glioma (DIPG) and other diffuse midline gliomas (DMGs) with mutated histone H3 K27M (H3-K27M)1–5 are aggressive and universally fatal pediatric brain cancers6. Chimeric antigen receptor (CAR)-expressing T cells have mediated impressive clinical activity in B cell malignancies7–10, and recent results suggest benefit in cen- tral nervous system malignancies11–13. Here, we report that patient-derived H3-K27M-mutant glioma cell cultures exhibit uniform, high expression of the disialoganglioside GD2. Anti-GD2 CAR T cells incorporating a 4-1BBz costimulatory domain14 demonstrated robust antigen-dependent cytokine generation and killing of DMG cells in vitro. In five indepen- dent patient-derived H3-K27M+ DMG orthotopic xenograft models, systemic administration of GD2-targeted CAR T cells cleared engrafted tumors except for a small number of residual GD2lo glioma cells. To date, GD2-targeted CAR T cells have been well tolerated in clinical trials15–17. Although GD2-targeted CAR T cell administration was tolerated in the majority of mice bearing orthotopic xenografts, peritumoral neuroinflammation during the acute phase of antitumor activ- ity resulted in hydrocephalus that was lethal in a fraction of animals. Given the precarious neuroanatomical location of midline gliomas, careful monitoring and aggressive neuroin- tensive care management will be required for human trans- lation. With a cautious multidisciplinary clinical approach, GD2-targeted CAR T cell therapy for H3-K27M+ diffuse glio- mas of pons, thalamus and spinal cord could prove transfor- mative for these lethal childhood cancers.

A very big thank you to all of the people who have been so very generous and thoughtful during this time. We’ve had many meals delivered and there has been an abundance of toys, activities, stuffed animals, cards, blankets, offers to help, and love and prayers poured out on us. Thank you!!! Vivian was back in school after Spring Break yesterday and loved being back…again today with her favorite, ballet, after. Photo 1. is a trail ride later this afternoon with our amazing neighbors. 2. a lovely prayerful pieced of art made by wonderful woman who spent two months praying over this and Vivian while she was creating it. 3. a quilt made by the children and Viv’s school, Little Oak Montessori. These kids and their parents have diligently and lovingly created beautiful things to send to Viv to show her she was missed during her 2 months away from school. 4,5. Spring Break trip to Hawaii that worked out despite being scheduled prior to diagnosis. We left a day and a half after she finished radiation.

We are thankful to each of you who have reached out. Especially for prayers as that is our only hope as there is no cure. She will have an MRI next Wednesday. The doctors say it doesn’t usually look very good at this point after all the trauma of radiation. It would be a complete and absolute miracle if it is just GONE. We know that God CAN do that. We believe He has bigger plans for this little one. #defeatdipg

We had a little celebration last night for the end of radiation for Viv. 2 car loads of cousins from Yakima and a few local friends! Viv is seemingly immediately happier, sturdier, and more energetic than at any time during her treatment. An answer to many prayers and a sense of relief on her part to be finished. We know there is a long road ahead still and are ready to fight in every way we know. Prayerfully, lovingly, and medically. We will have a post trial MRI in 3 weeks. Late April Make A Wish (it makes me teary eyed every time I think about that fact that we have a Wish kid) is sending us to Orlando. After that we will start some other kind of treatment to fight this. Thank you for praying with us! Please continue to pray for nothing less than complete healing for our girl.

Today is Vivian’s last day of radiation and the last day of the chemo trial. She’s thrilled knowing she won’t be swallowing those pills each day any more. She’s really happy she doesn’t have to “go to sleep” anymore for treatment. And, finally, the PICC line will be coming out today and she can finally have a proper soak in the tub/shower/pool.

Vivian has shown real grit and stamina and we are proud of her. The treatments have made a noticeable change in her condition, and she’s better today than she has been in two months. Thank you, medical teams! Thank you, Lord.

Please join us in praying that the next step becomes clear and that God grants us wisdom in choosing the best of limited options. And, most importantly, continue to join us in believing and praying for Viv’s complete recovery. Thank you!

I just received this photo from someone at our church (Hood River Alliance Church) 2 weeks ago after Simon went on stage to share the next of Vivian’s terrible prognosis. Then we asked people to come and pray over Viv. Nearly no one is left in the pews.

We understand now too, that this picture is also symbolic of the people who have been called to prayer around the world for our girl. We thank you for praying. That is our only hope with this diagnosis. We know Our Creator can save our Viv. We will glorify Him along this path. Prayers for complete healing for Viv. I would more than anything want His answer to this prayer to also include a cure for DIPG for other kids as well.

Vivian and Simon at the Father Daughter Dance Saturday. And one with her friend Violet. She has been looking forward to it all year!

Back to treatments and the ever changing schedule today. We were all happy to have a few days off. I love this girl so much. Met with naturopath today to help keep her healthy during treatment. Please continue to pray for God’s perfect touch to heal her.

I also talked to the Radiation MD today about what it would take to find a cure. The summary was basically money in the right hands of people who are thinking outside the box. Little money has been invested because it is such a a rare cancer. I’m sure I will have more on this later.