DIPG.org News https://dipg.org/blog Get the latest news about The Cure Starts Now and DIPG research progress Research Update: Investigating the Role of DIPG-Derived Exosomes in Tumor Growth and Invasion 
<div class="embed-container"><iframe src="https://www.youtube.com/embed/FXsgsFn_V4g" frameborder="0" allowfullscreen=""></iframe></div>
<h4 class="article-title">Background</h4>
<p>Paediatric-type diffuse High-Grade Gliomas (PDHGG) are highly heterogeneous tumours which include distinct cell sub-populations co-existing within the same tumour mass. We have previously shown that primary patient-derived and optical barcoded single-cell-derived clones function as interconnected networks. Here, we investigated the role of exosomes as a route for inter-clonal communication mediating PDHGG migration and invasion.</p>
<h4 class="article-title">Results</h4>
<p>A comprehensive characterisation of seven optical barcoded single-cell-derived clones obtained from two patient-derived cell lines was performed. These analyses highlighted extensive intra-tumour heterogeneity in terms of genetic and transcriptional profiles between clones as well as marked phenotypic differences including distinctive motility patterns. Live single-cell tracking analysis of 3D migration and invasion assays showed that the single-cell-derived clones display a higher speed and longer travelled distance when in co-culture compared to mono-culture conditions. To determine the role of exosomes in PDHGG inter-clonal cross-talks, we isolated exosomes released by different clones and characterised them in terms of marker expression, size and concentration. We demonstrated that exosomes are actively internalized by the cells and that the inhibition of their biogenesis, using the phospholipase inhibitor GW4689, significantly reduced the cell motility in mono-culture and more prominently when the cells from the clones were in co-culture. Analysis of the exosomal miRNAs, performed with a miRNome PCR panel, identified clone-specific miRNAs and a set of miRNA target genes involved in the regulation of cell motility/invasion/migration. These genes were found differentially expressed in co-culture versus mono-culture conditions and their expression levels were significantly modulated upon inhibition of exosome biogenesis.</p>
<h4 class="article-title">Conclusions</h4>
<p>In conclusion, our study highlights for the first time a key role for exosomes in the inter-clonal communication in PDHGG and suggests that interfering with the exosome biogenesis pathway may be a valuable strategy to inhibit cell motility and dissemination for these specific diseases.</p>
<p><span class="button"><a href="https://cellandbioscience.biomedcentral.com/articles/10.1186/s13578-023-01166-5" target="_blank" rel="noopener">Full-Text Study</a></span></p> https://dipg.org/blog/research-update-investigating-the-role-of-dipg-derived-exosomes-in-tumor-growth-and-invasion/ Fri, 12 Jan 2024 08:42:54 -0500 https://dipg.org/13563 Characteristics of children ≤36 months of age with DIPG: A report from the international DIPG registry <p><em>As a supplement to the Journal of Clinical Oncology 2018 publishing from the <a href="https://dipgregistry.org" target="_blank" rel="noopener">International DIPG/DMG Registry</a> and statistics of DIPG and DMG, the International DIPG/DMG Registry releases new age specific findings and long-term survival prognosis.</em></p>
<p><strong>Background</strong></p>
<p>Children ≤36 months with diffuse intrinsic pontine glioma (DIPG) have increased long-term survival (LTS, overall survival (OS) ≥24 months). Understanding distinguishing characteristics in this population is critical to improving outcomes.</p>
<p><strong>Methods</strong></p>
<p>Patients ≤36 months at diagnosis enrolled on the International DIPG Registry (IDIPGR) with central imaging confirmation were included. Presentation, clinical course, imaging, pathology and molecular findings were analyzed.</p>
<p><strong>Results</strong></p>
<p>Among 1183 patients in IDIPGR, 40 were eligible (median age: 29 months). Median OS was 15 months. Twelve patients (30%) were LTS, 3 (7.5%) very long-term survivors ≥5 years. Among 8 untreated patients, median OS was 2 months. Patients enrolled in the registry but excluded from our study by central radiology review or tissue diagnosis had median OS of 7 months. All but 1 LTS received radiation. Among 32 treated patients, 1-, 2-, 3-, and 5-year OS rates were 68.8%, 31.2%, 15.6% and 12.5%, respectively. LTS had longer duration of presenting symptoms (<em>P</em> = .018). No imaging features were predictive of outcome. Tissue and genomic data were available in 18 (45%) and 10 patients, respectively. Among 9 with known H3K27M status, 6 had a mutation.</p>
<p><strong>Conclusions</strong></p>
<p>Children ≤36 months demonstrated significantly more LTS, with an improved median OS of 15 months; 92% of LTS received radiation. Median OS in untreated children was 2 months, compared to 17 months for treated children. LTS had longer duration of symptoms. Excluded patients demonstrated a lower OS, contradicting the hypothesis that children ≤36 months with DIPG show improved outcomes due to misdiagnosis.</p>
<p><span><span class="button"><a href="https://doi.org/10.1093/neuonc/noac1231" target="_blank" rel="noopener">Full-Text Study</a></span></span></p> https://dipg.org/blog/characteristics-of-children-36-months-of-age-with-dipg-a-report-from-the-international-dipg-registry/ Tue, 27 Dec 2022 11:31:09 -0500 https://dipg.org/12173 Are There Any Survivors of DIPG? <p><em>The following article first appeared on <a href="https://www.thecurestartsnow.org/news/are-there-any-survivors-of-dipg/" title="Are There Any Survivors of DIPG?">thecurestartsnow.org</a></em></p>
<p>The diagnosis of diffuse intrinsic pontine glioma (<a href="https://dipg.org/">DIPG</a>) or diffuse midline glioma (DMG) is often casually regarded as a terminal cancer, but what are the true statistics regarding survival? For the first time since the classification of DIPG and DMG we now have these numbers due to the selfless participation of over 1,400 patients in the <a href="https://dipgregistry.org/" target="_blank" rel="noopener">International DIPG/DMG Registry</a> and the SIOPe (European) DIPG Registry. The largest linked database of DIPG and DMG data comprising the cooperative efforts of over 110 hospitals in 17 countries, it was one of the most ambitious and largest project created from the DIPG community after the 2011 DIPG Symposium. And now, it is starting to aid in the understanding of this “<a href="https://www.thecurestartsnow.org/who-we-are/mission/" title="Mission">homerun</a>” cancer that may provide clues to a cure for all cancers.</p>
<p><a href="https://dipg.org/dipg-stats/">See More DIPG Statistics</a></p>
<p>In short, there are DIPG survivors. Although <a href="/facts/dipg-survival-rate-and-prognosis/" title="DIPG Survival Rate and Prognosis">typical overall survival ranges from 8-11 months</a>, there are several characteristics that may lead to an improved diagnosis. These characteristics include those that are diagnosed either before the age of 3 or after the age of 10, those patients that have fewer symptoms at diagnosis, those patients that are diagnosed with a smaller tumor that does not extend beyond the pons and those patients that have tumors with an expression of a histone mutation. Considering all diagnoses, the 2-year survival rate typically is 10% and the 5-year survival rate is around 2%. Still considering that the majority of DIPG and DMG patients tend to be children, even these survival rates are difficult. </p>
<h4 class="article-title">Where can I get more data on DIPG and DMG long term survivors?</h4>
<p>Since 1996, there have been three survivorship studies that are typically regarded as primary sources of DIPG and DMG data. Each focuses on a different aspect of DIPG, from radiotherapy to commonalities of long term survivors. They can be found at:</p>
<ul>
<li><a href="/media/3235/long-term-survivors.pdf" target="_blank" rel="noopener">Long Term Survivors of Childhood Brain Stem Gliomas Treated with Hyperfractionated Radiotherapy</a></li>
<li><a href="/media/3236/clinico-radiologic.pdf" target="_blank" rel="noopener">Clinico-Radiologic Characteristics of Long-Term Survivors of Diffuse Instrinsic Pontine Glioma</a></li>
<li><a href="https://www.thecurestartsnow.org/news/characteristics-of-long-term-survivors-of-dipg/" title="Characteristics of Long-Term Survivors of DIPG">Clinical, Radiologic, Pathologic, and Molecular Characteristics of Long-Term Survivors of Diffuse Instrinsic Pontine Glioma (DIPG): A Collaborative Report From the International and European Society for Pediatric Oncology DIPG Registries</a></li>
</ul>
<p>Generally each of these reports tend to confirm the limited, but potential survival from DIPG and DMG. </p>
<h4 class="article-title">What are the traits of survivors of DIPG?</h4>
<p>In 2017, an informal attempt was made to assess any patterns of survivors of DIPG and DMG. Through the efforts of The Cure Starts Now Foundation and the <a href="http://dipgcollaborative.org/" target="_blank" rel="noopener">DIPG Collaborative</a>, 14 long term survivors were anonymously brought together as part of the DIPG Symposium in a session labeled as "Club 22." During this effort discussions were held to review treatment paths, lifestyle choices and limited medical backgrounds in an attempt to find patterns not currently present in the registries. Unfortunately most confirmed the characteristics already defined of long term survivors in the registry report of 2018. Still it is important to note that as a result of the “Club 22” conference, nearly all survivors were registered in the International DIPG/DMG Registry.</p>
<h4 class="article-title">Why can’t I find survivors of DIPG?</h4>
<p>In most cases, long term survivors of DIPG and DMG fall victim to the stigma of being a survivor. Bias in the community that express that there “aren’t any survivors” or that survivors are likely “misdiagnosed” tend to lead to distrust and alienation from the DIPG community. For this reason, many survivors often do not engage in community functions or participate in awareness efforts. It is recommended that if we are to truly understand and benefit from their experience that the DIPG community develop specific survivorship sessions designed around their unique issues and quality of life difficulties.</p>
<h4 class="article-title">What can I do to help?</h4>
<p>If you want to change the statistics, please consider <a href="/donate/" title="Donate">giving a donation</a> towards homerun cancer research.</p> https://dipg.org/blog/are-there-any-survivors-of-dipg/ Fri, 30 Sep 2022 14:31:28 -0500 https://dipg.org/12006 Research Update: CBD use in DMG 
<div class="embed-container"><iframe src="https://www.youtube.com/embed/qPBi9WF4EiU" frameborder="0" allowfullscreen=""></iframe></div>
<h4 class="article-title">Abstract</h4>
<p><span>Diffuse midline gliomas (DMG) are highly invasive brain tumors with rare survival beyond two years past diagnosis and limited understanding of the mechanism behind tumor invasion. Previous reports demonstrate upregulation of the protein ID1 with H3K27M and </span><em>ACVR1</em><span> mutations in DMG, but this has not been confirmed in human tumors or therapeutically targeted.</span></p>
<h4 class="article-title">Methods</h4>
<p><span>Whole exome, RNA, and ChIP-sequencing was performed on the ID1 locus in DMG tissue. Scratch-assay migration and transwell invasion assays of cultured cells were performed following shRNA-mediated ID1-knockdown. In vitro and in vivo genetic and pharmacologic [cannabidiol (CBD)] inhibition of ID1 on DMG tumor growth was assessed. Patient-reported CBD dosing information was collected.</span></p>
<h4 class="article-title">Results</h4>
<p><span>Increased ID1 expression in human DMG and in utero electroporation (IUE) murine tumors is associated with H3K27M mutation and brainstem location. ChIP-sequencing indicates ID1 regulatory regions are epigenetically active in human H3K27M-DMG tumors and prenatal pontine cells. Higher ID1-expressing astrocyte-like DMG cells share a transcriptional program with oligo/astrocyte-precursor cells (OAPCs) from the developing human brain and demonstrate upregulation of the migration regulatory protein SPARCL1. Genetic and pharmacologic (CBD) suppression of ID1 decreases tumor cell invasion/migration and tumor growth in H3.3/H3.1K27M PPK-IUE and human DIPGXIIIP* in vivo models of pHGG. The effect of CBD on cell proliferation appears to be non-ID1 mediated. Finally, we collected patient-reported CBD treatment data, finding that a clinical trial to standardize dosing may be beneficial.</span></p>
<h4 class="article-title">Conclusions</h4>
<p><span>H3K27M-mediated re-activation of ID1 in DMG results in a SPARCL1+ migratory transcriptional program that is therapeutically targetable with CBD.</span></p>
<p><span><span class="button"><a href="https://doi.org/10.1093/neuonc/noac141" target="_blank" rel="noopener">Full-Text Study</a></span></span></p>
<p><span></span></p> https://dipg.org/blog/research-update-cbd-use-in-dmg/ Wed, 29 Jun 2022 14:23:57 -0500 https://dipg.org/11610 Characteristics of patients ≥10 years of age with diffuse intrinsic pontine glioma: a report from the International DIPG/DMG Registry <p><em>As a supplement to the Journal of Clinical Oncology 2018 publishing from the <a href="https://dipgregistry.org" target="_blank" rel="noopener">International DIPG/DMG Registry</a> and statistics of DIPG and DMG, the International DIPG/DMG Registry releases new age specific findings and long-term survival prognosis.</em></p>
<div class=" sec">
<div class="title"><strong>Background</strong></div>
<p class="chapter-para">Diffuse intrinsic pontine gliomas (<a href="/facts/what-is-dipg/" title="What is DIPG">DIPG</a>) generally occur in young school-age children, although can occur in adolescents and young adults. The purpose of this study was to describe clinical, radiological, pathologic, and molecular characteristics in patients ≥10 years of age with DIPG enrolled in the International DIPG Registry (IDIPGR).</p>
</div>
<div class=" sec">
<div class="title"><strong>Methods</strong></div>
<p class="chapter-para">Patients ≥10 years of age at diagnosis enrolled in the IDIPGR with imaging confirmed DIPG diagnosis were included. The primary outcome was overall survival (OS) categorized as long-term survivors (LTS) (≥24 months) or short-term survivors (STS) (<24 months).</p>
</div>
<div class=" sec">
<div class="title"><strong>Results</strong></div>
<p class="chapter-para">Among 1010 patients, 208 (21%) were ≥10 years of age at diagnosis; 152 were eligible with a median age of 12 years (range 10-26.8). Median OS was 13 (2-82) months. The 1-, 3-, and 5-year OS was 59.2%, 5.3%, and 3.3%, respectively. The 18/152 (11.8%) LTS were more likely to be older (<em>P</em><span> </span>< .01) and present with longer symptom duration (<em>P</em><span> </span>< .01). Biopsy and/or autopsy were performed in 50 (33%) patients; 77%, 61%, 33%, and 6% of patients tested had H3K27M (<em>H3F3A</em><span> </span>or<span> </span><em>HIST1H3B</em>),<span> </span><em>TP53</em>,<span> </span><em>ATRX</em>, and<span> </span><em>ACVR1</em><span> </span>mutations/genome alterations, respectively. Two of 18 patients with IDH1 testing were<span> </span><em>IDH1</em>-mutant and 1 was a LTS. The presence or absence of H3 alterations did not affect survival.</p>
</div>
<div class=" sec">
<div class="title"><strong>Conclusion</strong></div>
<p class="chapter-para">Patients ≥10 years old with DIPG have a median survival of 13 months. LTS present with longer symptom duration and are likely to be older at presentation compared to STS.<span> </span><em>ATRX</em><span> </span>mutation rates were higher in this population than the general DIPG population.</p>
</div>
<p><span class="button"><a href="https://doi.org/10.1093/neuonc/noab140" target="_blank" rel="noopener">Full-Text Study</a></span></p> https://dipg.org/blog/characteristics-of-patients-10-years-of-age-with-diffuse-intrinsic-pontine-glioma-a-report-from-the-international-dipgdmg-registry/ Thu, 17 Feb 2022 14:51:14 -0500 https://dipg.org/11070 Compassionate Use, Expanded Access, and Off-Trial Use of Treatments for DIPG / DMG <p>When confronting a diagnosis of DIPG / DMG, <a href="/treatment/clinical-trials/" title="Clinical Trials for DIPG">clinical trials</a> are often the first resort beyond or concurrent with <a href="/treatment/radiation-therapy/" title="Radiation Therapy">radiation for treatment</a> options.  Although these trials may not offer a cure, phase 2 and phase 3 trials do offer a limited measure of comfort from life-threatening side effects.  But if these options don’t work, many patients find themselves weighing other options including phase 1 trials or even compassionate use opportunities where little to nothing may be known about the compound being tried.  When this happens, there are several pathways to consider, from standard compassionate access to expanded access and even off-trial usage of drugs.  Below we’ll explore some of the key differences between each, the limitations of each pathway and even a provisional pathway that may also develop in the coming years:</p>
<h2>Compassionate Use of DIPG / DMG Treatments</h2>
<p>Compassionate use of a therapy or compound is a formal channel recognized by the FDA to grant permission for a specific patient to gain access to an experimental treatment. It is only for serious or life-threatening diseases or conditions for an investigational medical product for which there are no other comparable or satisfactory therapies available.  These therapies have not been formally approved for use by the FDA, but are usually in the investigative stage through other trials.  As with any therapy not formally approved there can be serious side effects, even fatal, and the effectiveness of the therapy isn’t known. </p>
<p>Often the path to compassionate approval can be lengthy and difficult.  In order to gain approval, the patient must accomplish the following:</p>
<ul>
<li>Approval from a Licensed Physician – In any compassionate use case, other than the initial request of the patient, the physician is the most integral to this process. He or she must have explored other treatment options and work with industry, the FDA and an Institutional Review Board (IRB) to gain approval for compassionate use of the therapy.  This is done in writing and may require updates and revisions.  Additionally, the physician must then oversee the administration of the therapy, general care and reporting of responses.</li>
<li>Approval of Industry – In any compassionate use case, the company producing the therapy must also approve of its use in these cases. Additionally, they also may be required to participate in the reporting process.</li>
<li>Approval of an IRB – The IRB’s role is to protect the rights of patients participating in any study. This is accomplished with an approval of the plan of administration of the therapy, the consents and communication with the patient to ensure that they understand the inherent issues of the treatment path.</li>
<li>Approval of the FDA – Lastly, the FDA must also review the request and determine if compassionate access is allowed.</li>
</ul>
<h2>Expanded Access of DIPG / DMG Treatments</h2>
<p>The term Expanded Access is often used interchangeably with Compassionate Use, but often is used to refer to multi-patient programs of Compassionate Use. Although many of the approval thresholds still must be upheld, many formal Expanded Access programs effectively recognize a group of patients with the same diagnoses and set certain criteria for those that will be allowed to participate – much like a clinical trial.  In these cases, while the data still needs to be captured for patient safety, it may not be used for ultimate therapy approval with the FDA.  Typically Expanded Access programs are setup where clinical trials are limited, the type of disease is life-threatening and where there may be some foundational and industry support to bear the costs of both the therapy and also the reporting functions.  Expanded Access programs may also be used in cases where drug usage may be approved for one class of patients but not another – often dealing with access to certain age groups such as children when an adult version has approval.</p>
<h2>Off-Trial Usage of DIPG / DMG Treatments</h2>
<p>One particular option that isn’t often explored is Off-Trial Usage of a therapy. Here the compound may already have completed a phase 1 or phase 2 trial but the patient may not qualify for an existing trial due to progression, use of another drug or even certain functional limitations.  Sometimes it can also be used when a trial temporarily halts recruitment when it moves between phases.  In these cases, the treating physician may seek approval for an off-trial usage of the compound.  In this case, the approval may be slightly easier than compassionate use because the therapy may already be approved for limited use.  Once again, data may not be collected for drug approval, but will be reviewed for patient safety.  It is important that patients discuss this option with their doctor because often it may be an easier, but overlooked, path to treatment.</p>
<h2>Provisional Use of DIPG / DMG Treatments</h2>
<p>While not a current treatment pathway, Provisional Use is a proposed option that is the subject of the <strong>Promising Pathway Act</strong>. Here, advocates seek to recognize a new status with the FDA taking Compassionate Access to a provisional approval for 2 years or less, thus allowing groups of patients to participate and gain access to new therapies that are reasonably believed to be safe.  These patients will then be monitored for safety and the data would be recorded in a third-party registry for future approval processes.  To learn more about this pathway, visit <a href="https://www.congress.gov/bill/117th-congress/senate-bill/1644/text">https://www.congress.gov/bill/117th-congress/senate-bill/1644/text</a>.  To help with the approval of this act, please contact your legislators below:</p>
<p><span class="button"><a class="btn secondary" href="https://www.thecurestartsnow.org/how-to-help/promising-pathway-act/" title="Promising Pathway Act">Contact Your Legislators</a></span></p>
<p>It is important to note that each of the above pathways do not deal with the financial aspect of participation and often are not covered by normal health insurance.  Still, they seek to open up options for the patients and are of particular significance to those fighting DIPG or DMG.</p> https://dipg.org/blog/compassionate-use-expanded-access-and-off-trial-use-of-treatments-for-dipg-dmg/ Mon, 17 Jan 2022 12:32:53 -0500 https://dipg.org/10943 Australian Researchers Find New Way to Target Deadly Childhood Cancer With CBL0137 <p><i>The following article originally appeared on <a href="https://www.thecurestartsnow.org/news/australian-researchers-find-new-way-to-target-deadly-childhood-cancer-with-cbl0137/" title="Australian Researchers Find New Way to Target Deadly Childhood Cancer With CBL0137">thecurestartsnow.org</a>.</i></p>
<p>Research by Australian scientists could pave the way to a new treatment for a currently incurable brain cancer in children called Diffuse Intrinsic Pontine Glioma, or <a href="/facts/what-is-dipg/" title="What is DIPG">DIPG</a>. Affecting about 150-300 children in US each year, DIPG is a devastating disease with a median survival range of 8-11 months, according to <a href="/facts/dipg-survival-rate-and-prognosis/" title="DIPG Prognosis and Survival Rates">DIPG.org</a>.</p>
<p>The research, led by scientists at Children’s Cancer Institute and published this week in the international journal, Cell Reports, offers an exciting new therapeutic approach for the treatment of DIPG by using a new anti-cancer drug.</p>
<p>The new drug, <strong>CBL0137</strong>, is an anti-cancer compound developed from the antimalarial drug quinacrine. The researchers found that CBL0137 directly reverses the effects of the key genetic drivers in DIPG, and has a profound effect against DIPG tumor models. They also found CBL0137 is even more effective when combined with a second drug, panobinostat, a new type of drug known as a histone deacetylase (HDAC) inhibitor. When used in combination, the two drugs were found to work synergistically, each enhancing the others effects against DIPG.</p>
<p>Associate Professor David Ziegler, Group Leader at Children’s Cancer Institute and pediatric oncologist at the Kids Cancer Centre, Sydney Children’s Hospital, said there is a desperate need for a new and more effective way to treat DIPG.</p>
<blockquote>
<p>“Over the years, many different types of treatments have been tried for DIPG, but none so far have proven effective in clinical trials of children with the disease,” he said. “Part of the problem is that the genetic driver in DIPG is a master gene that controls thousands of other genes. Until now, we have not known how to switch it off. Our data shows that CBL0137 acts to reverse the effects of this master gene, and then switch off the growth of the DIPG tumor cells.”</p>
</blockquote>
<p>In the newly published study, Associate Professor Ziegler and his colleagues in the Brain Tumours Group at Children’s Cancer Institute built on earlier research carried out by the Institute’s Experimental Therapeutics Group, who found that CLB037 was effective against neuroblastoma. Taking a similar approach with DIPG, the Brain Tumours Group confirmed that CBL0137 interferes with the growth of DIPG tumors by inhibiting an important molecule known as FACT (needed for DNA transcription, replication and repair). They found that FACT binds with the key genetic driver in DIPG – a mutation called K27M. By treating DIPG cells with CBL0137 they were able to target this gene and stop tumour cells from growing. Next, they tested CBL0137 in ‘patient-derived xenografts’ − mice specially bred to grow DIPG cells taken directly from children with the disease − showing it effectively penetrated the blood-brain barrier and increased survival time.</p>
<p>When the researchers added panobinostat to the mix, they found that the CBL0137-panobinostat combination was even more effective at killing DIPG cells and further improved the survival time of mice with DIPG.</p>
<blockquote>
<p>“K27M is the Achilles heel of DIPG tumor cells,” said Associate Professor Ziegler. “The finding that CBL0137 indirectly acts against this genetic driver is very exciting, and gives us great hope for this treatment strategy.”</p>
</blockquote>
<p>A/Prof Ziegler will lead an international clinical trial of CBL0137 for children with DIPG that will open in the top children’s hospitals in the US and Australia. Plans to launch the trial are boosted by the fact that CBL0137 has recently successfully completed testing in phase I clinical trials in adults with solid tumors.</p>
<p>-</p>
<p><strong>About The Cure Starts Now<br></strong>The Cure Starts Now was started by parents in response to a desire to fund Homerun Cure™  and universal cure strategy research, starting with those cancers that experts believe we can learn the most from: DIPG/DMG, medulloblastoma and pediatric brain cancers. Today, The Cure Starts Now Foundation has over 40 locations in three countries.  Believing in more than just awareness, The Cure Starts Now has funded over $16 million in cancer research, resulting in over 100 cutting edge research grants in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>, and follow <a href="http://www.facebook.com/TheCureStartsNow/">www.facebook.com/TheCureStartsNow/</a> for updates.</p>
<p><strong>About Children’s Cancer Institute</strong> <br>Originally founded by two fathers of children with cancer in 1976, Children’s Cancer Institute is the only independent medical research institute in Australia wholly dedicated to research into the causes, prevention and cure of childhood cancer. Forty years on, our vision is to save the lives of all children with cancer and improve their long-term health, through research. The Institute has grown to now employ over 300 researchers, operational staff and students, and has established a national and international reputation for scientific excellence. Our focus is on translational research, and we have an integrated team of laboratory researchers and clinician scientists who work together in partnership to discover new treatments which can be progressed from the lab bench to the beds of children on wards in our hospitals as quickly as possible. These new treatments are specifically targeting childhood cancers, so we can develop safer and more effective drugs and drug combinations that will minimise side-effects and ultimately give children with cancer the best chance of a cure with the highest possible quality of life. More at <a href="https://www.ccia.org.au/" target="_blank" rel="noopener">www.ccia.org.au</a></p>
<p><strong>Sign up to receive updates about other research breakthroughs like these at <a href="https://dipg.org/#updates" data-anchor="#updates">DIPG.org</a></strong></p> https://dipg.org/blog/australian-researchers-find-new-way-to-target-deadly-childhood-cancer-with-cbl0137/ Tue, 13 Apr 2021 10:42:49 -0500 https://dipg.org/9994 Steroids – Practical Advice from a Parent's Perspective <p>When a child is diagnosed with DIPG, they are commonly put on a <a href="/treatment/steroids/" title="Steroids">steroid</a>. Because of the location of DIPG , the high risk of the tumor swelling and causing more side effects, the use of steroids are necessary to help.  Steroids are an anti-inflammatory used to reduce swelling and inflammation around the tumor.</p>
<p>“What we are using the steroids for in DIPGs is to calm the inflammation and swelling that you see after radiation” says Dr. Trent Hummel, Pediatric Neuro-Oncologist, Cincinnati Children’s Hospital.</p>
<p>Although the use of steroids is sometimes crucial, it doesn’t come without side effects. The most common ones being rapid weight gain, sleep problems (insomnia), mood changes, acne, dry skin, and thinning skin. These side effects can be very difficult to manage.</p>
<blockquote>
<p>“The swelling can cause symptoms and can cause the patient to regress with their clinical symptoms. Most physicians will increase the steroids to get the clinical result that is desired and they will try to quickly back off because of the side effects.”, added Hummel. “The mantra we have as pediatric neuro-oncologists is we will give the steroids but as soon as we raise that dose, we will also try to bring it back down”.</p>
</blockquote>
<p>In an effort to learn more about managing the side effects of steroids, we polled parents for practical tips and advice from both <a href="https://www.facebook.com/groups/dipgwarriors" target="_blank" rel="noopener">DIPG</a> and medulloblastoma support groups.  Rather than medical advice, their tips are personal opinions on how they dealt with steroid use and coped with the side effects. </p>
<p><em>Disclaimer: Names have been modified to protect the parent’s privacy.  <strong>Always consult with your doctor prior to implementing any changes to yours or your child’s care</strong>.</em></p>
<h4>Sleep Problems:</h4>
<ul>
<li>We gave our son melatonin at night to help him sleep.  MF</li>
<li>We used melatonin to help sleep. JG</li>
</ul>
<h4>Rapid Weight Gain:</h4>
<ul>
<li>We are doing a keto diet and I think that is making a big difference because he isn't burning through carbs/empty calories. JA</li>
<li>We really watched the kind of food he ate. It’s hard but we really tried to eat healthy foods and stayed away from junk food, sweets and things. JG</li>
</ul>
<h4>Mood swings:</h4>
<ul>
<li>The emotional toll on my daughter was so hard [that we worked with her doctor for prescription depression treatments]. My daughter did not want to take that either, but it seemed to take the edge off the simultaneous anger and sadness and fear. "Roid Rage" is real. SM</li>
</ul>
<h4>Other alternatives:</h4>
<ul>
<li>Turmeric helped reduce inflammation over time also when taken regularly. I believe it also helped remain on a “lower dose” steroid regime and aided in coming off without severe withdrawals during the taper. NP</li>
<li>We also are doing a fairly aggressive CBD/THC regimen right now during radiation (second round) which could be helping with his mood and sleep. JA</li>
</ul>
<p><span class="button"><a href="/treatment/steroids/" title="Steroids">Learn more about steroid treatment for DIPG</a></span></p> https://dipg.org/blog/steroids-practical-advice-from-a-parents-perspective/ Wed, 24 Mar 2021 08:53:26 -0500 https://dipg.org/9905 Practical Advice from Parents for Newly Diagnosed DIPG Families <p>A <a href="/facts/diagnosis-and-imaging-of-dipg/" title="Diagnosis and Imaging of DIPG">cancer diagnosis</a> is difficult enough but when the diagnosis is for a child, it’s life-altering and one of the single most devastating events in a parent’s life. There is no set path to trek when handling a childhood cancer diagnosis. Advice from parents who have been down this road can provide hope and tips for handling treatment and making memories.</p>
<p>We’ve compiled a list of advice and tips for newly diagnosed families based on responses we received from parents in our <a href="https://www.facebook.com/groups/dipgwarriors" target="_blank" rel="noopener">DIPG Facebook support group</a> who have been down this road. This advice is not from medical professionals, but it can provide invaluable information that can help you through this journey.</p>
<p><em>Disclaimer: Names have been modified to protect the parent’s privacy.</em></p>
<h3>Ask Questions and Take Notes</h3>
<ul>
<li>“You will be so overwhelmed with all the information at first to think of everything you want to ask. Write down every question as you or a family member think of it. Making a list will be so helpful when talking to your oncologist.” – L.B.<br><br></li>
<li>“Write things down - questions, answers, words you want to look up, etc.” – A.L.<br><br></li>
<li>“No question is a dumb question. Write things down that you notice or want answers to because we know our children the best. Ask for resources to support groups and foundations that can help you and your child.” – D.S.</li>
</ul>
<h3>Bring Another Set of Ears to Important Doctor’s Appointments</h3>
<ul>
<li>“Have someone go to the appointments with you and take notes. My husband and I would both go, and we would walk out with a completely different recall/understanding of what the doctor said! You can’t process everything that is being thrown at you on top of the emotional distress you are under.” – E.H.<br><br></li>
<li>“It is always good to record so you can relisten. Lots of information.” – H. <em>(Before recording a doctor, make sure you have their permission because it is illegal in many states to record a person without their knowledge.)</em></li>
</ul>
<h3>Get a <a href="/facts/diagnosis-and-imaging-of-dipg/" title="Diagnosis and Imaging of DIPG">Biopsy</a></h3>
<ul>
<li>“Definitely get a biopsy! Look into trails after radiation and spend every day with your child like it is their last; you never know when the decline will happen.” – B.B.<br><br></li>
<li>“Get the biopsy even if your oncologist and radiologist say it isn't needed. You're extremely likely to need the information later to make intelligent decisions about emerging treatment options.” – K.R.</li>
</ul>
<h3>Get a Second Opinion</h3>
<ul>
<li>“Get multiple opinions and an oncologist (or treatment team) who will talk strategy and game plans for fighting cancer.” – D.A.<br><br></li>
<li>“Register for the <a href="https://dipgregistry.org" target="_blank" rel="noopener">International DIPG Registry</a>. By doing this, your child’s MRI can be peer-reviewed by the best in the business to see if there is anything they might identify as abnormal or as another type. The biggest help is that the Registry has nearly 1,200 DIPG/DMG samples to compare to, which is about eight times what any other database offers. And with information, numbers are key.” – Keith Desserich, Chairman of the Board for The Cure Starts Now<br><br></li>
<li>“Get multiple opinions. Don’t be afraid to try alternative methods of treatment, but don’t wait until it’s the only option left.” – H.S.<br><br></li>
<li>“Seek other opinions and be open to non-traditional therapies.” – N.P.</li>
</ul>
<h3>Don’t Second Guess Your Decisions</h3>
<ul>
<li>“Don’t ever feel guilty about making one decision over another. You are doing your very best. You love your child, and your child loves you.” – H.S.<br><br></li>
<li>“Don't look back or question the decisions you make. You are making the best decision for your child with the information available, and every case and child is different.” – D.A.<br><br></li>
<li>“Be easy on yourself.” – R.W.<br><br></li>
<li>“Never compare your child and their treatment to another child’s; they are each beautifully unique.” – K.F.</li>
</ul>
<h3>Keep Hope Alive</h3>
<ul>
<li>“Know the reality of the diagnosis, but live with hope. Be honest, in an age-appropriate way, with the child and his/her siblings.” – S.S.<br><br></li>
<li>“Don’t lose hope. PRAY.” – H.S.<br><br></li>
<li>“Be patient with yourself. Those first couple of days and weeks are super rough, but always keep hope!” – G.F.</li>
</ul>
<h3>Connect with Other Families Who Are in the Fight Through Support Groups</h3>
<ul>
<li>“Reach out to others. Google support groups if needed. See if your hospital hosts momcology meetings. Just knowing you are not alone is a big step. Celebrate all the victories, no matter what they are. I found saying hi to other parents in the hall made me feel better, even if I didn't get one back.” – D.S.<br><br></li>
<li>“Talk to other parents that have been in your shoes.” – H.S.</li>
</ul>
<p><span class="button"><a class="btn secondary" href="https://dipgwarrior.org" target="_blank" rel="noopener">Get one-on-one DIPG support</a></span></p>
<p><span class="button"><a class="btn secondary" href="https://www.facebook.com/groups/dipgwarriors" target="_blank" rel="noopener">Join the DIPG Support Group for Families</a></span></p>
<h3><a href="/blog/making-memories-after-diagnosis/" title="Making Memories After Diagnosis">Make Memories</a>, Take Photos and Videos</h3>
<ul>
<li>“Take a billion pictures and videos of your family as it is now. I took a TON and still wish I had taken more. Be honest with yourself. Try not to lose hope. Take more pictures.” – K.U.<br><br></li>
<li>“Take videos, lots of them. If your child is feeling good, go to Disney, take a trip, make memories. We had a great 16 months with our daughter; she wanted normal, so we gave it to her. Don’t think about tomorrow, you can’t change it.” – M.F.<br><br></li>
<li>“Spend every single minute you can with them making memories!” – S.H.<br><br></li>
<li>“Find joy anywhere you can. Cling to it. Create it. Live it. Love it.” – K.H.</li>
</ul>
<h3>Accepting Help from Others Can Make this Journey Lighter</h3>
<ul>
<li>“Accept Gifts. Even if you are a giver and it difficult to accept gifts, do it. This is a hard path. It is so expensive. It changes your whole world. You will give back in time and to the next family along the way. Accept the gift. People want to help because they either have been where you are or can’t imagine ever being where you are. Either way, it does both your heart and theirs good to share the bond.” – L.W.<br><br></li>
<li>“Accept help. Loads of people truly want to help, those you know and those you don’t. Let them. Accept the food, the gifts, the errand running. Your job is to focus on your child. Put down your phone. Give all of your attention to your family.” – by T.V.<br><br></li>
<li>“Don't be afraid to ask for help. Make a page for all your updates and have someone manage it for you, set up a GoFundMe page so you can take off work to spend every minute you can with your child, have someone set up meal trains for you, and take a Make-A-Wish trip as soon as you can!” – S.H.</li>
</ul>
<h3>Take Care of Yourself</h3>
<ul>
<li>“Don’t think too far out. Take it a moment at a time, or it gets overwhelming. Nap when your child naps; you need your rest, and you are no good if you don’t have any sleep.” – J.M.<br><br></li>
<li>“LOVE, for yourself, for each other, your child, and other children in the family. Try to take it one day at a time.” – Y.B.<br><br></li>
<li>“For everyone it's different. For me, I gave every ounce of strength I had to my family. Don't let the diagnosis dictate your daily life. Celebrate every win, no matter how small. Tell your child you are proud of them every day. Be involved in everything but, you don't need to become a doctor in order to help your child; your child doesn't want you to be their doctor, they want you to be Mom or Dad. Always fight for your child but be kind to everyone who helps in their care. Your child could be the one whose treatment leads to a cure.” – E.B.<br><br></li>
<li>“Remember it's okay to not be okay mentally. Seek out mental health care for your family, if needed. My daughter and I needed it during treatment and, by the time we were able to get an appointment, it took 10 months. Taking care of the body and mind is so important.” – D.S.<br><br></li>
<li>“No Dr. Google! That can make folks spin, and your sanity is paramount. One of our best “medicines” was remembering to find joy and happiness- even if for fleeting moments. Your child is watching how you handle it. Our kids are so tough. Keep them happy, however possible. Every journey is unique, but you aren’t alone!” – G.F.</li>
</ul>
<p><span class="button"><a class="btn secondary" href="/what-to-do-when-diagnosed/" title="What To Do When Diagnosed">Learn more about what to do after diagnosis</a></span></p> https://dipg.org/blog/practical-advice-from-parents-for-newly-diagnosed-dipg-families/ Wed, 03 Mar 2021 13:29:13 -0500 https://dipg.org/9844 Breakthrough International Cancer Trial Halts Tumor Growth 
<div class="embed-container"><iframe src="https://www.youtube.com/embed/Vfr4JVf9dFg" frameborder="0" allowfullscreen=""></iframe></div>
<p><em><br>The following article originally appeared on <a href="https://www.thecurestartsnow.org/news/breakthrough-international-cancer-trial-halts-tumor-growth/" title="Breakthrough International Cancer Trial Halts Tumor Growth">thecurestartsnow.org</a></em></p>
<p><strong>The Cure Starts Now Foundation funds novel trial that halts tumor growth in 2/3 of study</strong></p>
<p>CINCINNATI | February 18, 2021 – The Cure Starts Now announced that the Polyamine Pathway Metabolism as a Novel Therapeutic Option for Diffuse Intrinsic Pontine Glioma (<a href="/facts/what-is-dipg/" title="What is DIPG">DIPG</a>) grant, funded in partnership with the DIPG/DMG Collaborative, has resulted in the identification of a potentially revolutionary new drug treatment for brain cancer. <br><br>In pre-clinical mouse model testing, researchers found the promising drug combination of Difluoromethylornithine (DFMO) and AMXT 1501 led to the survival of two-thirds of the mice and that it stopped the growth of DIPG tumors in the mice. This drug therapy is the most effective treatment ever tested in laboratory models of this highly aggressive and incurable pediatric cancer.</p>
<blockquote>
<p>“When you combine these two drugs, the result is really spectacular,” said lead researcher and pediatric oncologist Dr. David Ziegler from the Children’s Cancer Institute and Sydney Children’s Hospital. “What we've seen is, actually, what we think is the most active drug that anyone's ever tested in the lab for DIPG and the tumors stop growing.”</p>
</blockquote>
<p>“Breakthroughs like this one are part of the reason we founded The Cure Starts Now,” said Brooke Desserich, Executive Director of The Cure Starts Now. “They provide parents with much-needed hope and move us immensely closer to finding the elusive cure for this horrific brain cancer. We are so proud of Dr. David Ziegler and his wonderful team of researchers. We can’t wait to start clinical trials.”</p>
<p>This is all part of The Cure Starts Now’s 12-year plan focusing on the Homerun Cure™ for all cancers. The belief behind this strategy is that to truly cure all cancers you have to first focus on those cancers that are immune to treatment, affect children, and are the biggest bullies with the highest death rate. With DIPG checking all three boxes, it became the focal point. The Cure Starts Now then adopted a generational funding strategy approach, effectively not only funding “test tube” grants, but also making the necessary preparations setting up concurrent clinical trials and bringing together the expertise to deliver results at three times the speed.</p>
<p>“For us, cancer research is like a relay race,” said Keith Desserich, Chairman of The Cure Starts Now. “It’s not just enough to beat cancer on the first lap – you have to also have the next person ready to take over for the second one and until you finish the race. I guess that’s just what we try to do differently: we believe it requires a long-term focus that not only identifies targets, but brings together researchers and then figures out how to make it work for the patient.”<br><br>In 2018, The Cure Starts Now identified this novel approach in Australia by Dr. Ziegler, seeking to block the polyamine pathway and stop the growth of DIPG tumors. After funding the grant, the charity began looking toward the future and, in the event that the lab research was a success, already started efforts to deliver the promising drug combination into clinical trials over the next four years through the <a href="https://connectconsortium.org/">CONNECT Consortium</a>, an international collaborative network of pediatric cancer centers, so that it would be available in 15 countries to children in the fight against this horrific cancer.<br><br>With the success of Dr. Ziegler’s pre-clinical mouse model testing, The Cure Starts Now’s long-term strategy has sped up the test-tube to bedside timeline by nearly three times, effectively ensuring that the wait between each step in the process is as minimal as possible.<br><br>Dr. Ziegler said that clinical trials of the drug combination in DIPG are planned to begin this year in children in a global study led by the Children’s Cancer Institute and, in combination with, the CONNECT Consortium, which is operational funded by The Cure Starts Now, the Brooke Healey Foundation and the Reflections of Grace Foundation.</p>
<p><span class="button"><a class="btn secondary" href="https://doi.org/10.1038/s41467-021-20896-z" target="_blank" rel="noopener">View The Study</a></span></p>
<p><em><u> </u></em></p>
<p><strong>About The Cure Starts Now</strong><u><br></u>The Cure Starts Now was started in honor of 6-year-old Elena Desserich, a Cincinnati girl who battled a rare, aggressive form of brain cancer known as DIPG. Today, The Cure Starts Now Foundation has over 40 locations in three countries and is the only cancer foundation dedicated to finding the Homerun Cure™ for cancer by focusing on one of the rarest, most aggressive forms of cancer. Believing in more than just awareness, The Cure Starts Now has funded over $16.4 million in cancer research in partnership with the DIPG Collaborative. This includes 100+ cutting edge research grants at over 100 hospitals in 15 countries since 2007. Learn more about The Cure Starts Now and their mission to find the Homerun Cure™ for cancer at <a href="http://www.thecurestartsnow.org">www.thecurestartsnow.org</a>, and follow <a href="http://www.facebook.com/TheCureStartsNow/">www.facebook.com/TheCureStartsNow/</a> for updates.</p>
<hr>
<p><em>Video Transcript: </em></p>
<p><em>Dr. David Ziegler and Dr. Maria Tsoli discuss their research team’s groundbreaking discovery into the treatment of DIPG, and what it may mean for children who are diagnosed with this disease. This project is the result of the <a href="https://dipgcollaborative.org/wp-content/uploads/2019/01/ES-Tsoli-Polyamine-pathway-metabolism-for-DIPG-175089.pdf">Polyamine Pathway Metabolism as a Novel Therapeutic Option for Diffuse Intrinsic Pontine Glioma</a> grant that was originally funded in 2018 by The Cure Starts Now and The DIPG Collaborative for $175,089. The grant was designed to investigate vulnerabilities in these types of tumors and to pair it with a drug. </em></p>
<p><em>Dr. David Ziegler:              “DIPG is the most common, what we call high-grade glioma that occurs in children. It peaks in children at about the age between five and seven years. Usually comes on very quickly over a couple of weeks, sometimes just with very mild symptoms. The outcome for these kids is terrible. And we have to go and tell their parents really what's one of the hardest conversations in the world to have. Which is that, essentially, your child has an incurable disease. Essentially, almost all of these children will die, usually within about a year of that diagnosis.”</em></p>
<p><em>Dr. Maria Tsoli:                  “One of the key challenges for us researchers has been the fact that we haven't had any biological material to do any drug testing.”</em></p>
<p><em>Dr. David Ziegler:              “Several years ago, we set up a tumor donation program. The parent could offer to have that tumor collected and put in our tumor bank. And, actually, allow research to be performed on these tumors for the first time in Australia, to start to come up with new treatments.”</em></p>
<p><em>Dr. Maria Tsoli:                  “We have found a few drugs that seem to be remarkably effective at reducing the growth of DIPG tumors.”</em></p>
<p><em>Dr. David Ziegler:              “We have been working on drugs that target what's called the polyamine pathway.”</em></p>
<p><em>Dr. Maria Tsoli:                  “Our team has found two drugs. Difluoromethylornithine (DMFO), a drug that stops the synthesis of polyamines, and AMXT-1501, a drug that stops the polyamines from entering the cells. Together, in combination, are being very effective at stopping the growth of DIPG tumors.”</em></p>
<p><em>Dr. David Ziegler:              “When you combine these two drugs, the result is really spectacular. What we've seen is actually what we think is the most active drug that anyone's ever tested in the lab for DIPG and the tumors stop growing.”</em></p>
<p><em>Dr. Maria Tsoli:                  “The next steps will be to take this therapy to the clinic. And offer it to children with DIPG, through Phase 1 and Phase 2 clinical trials.”</em></p>
<p><em>Dr. David Ziegler:              “We're working very closely with the company who's making this new drug. We're working with international researchers and clinicians from around the world. We're aiming to open the trial in the next year. Which, for the first time, will offer this new treatment for children with DIPG and other brain tumors as well.”</em></p>
<p><em>Dr. Maria Tsoli:                  “I would like to thank a lot of philanthropic associations and funding agencies for believing in this work.”</em></p>
<p><em>Dr. David Ziegler:              “It's only thanks to the support we get through the community and through parents and fundraisers and other groups that allow us to keep this research going, and to do what we do. When we started this program in DIPG, it was driven really by the parents.”</em></p>
<p><em>Dr. Maria Tsoli:                  “And without them, we wouldn't have been in the position of being able to do any testing and more importantly, identify this particular treatment.”</em></p>
<p><em>Dr. David Ziegler:              “We believe this is one of the first really important breakthroughs. And, ultimately, we won't be having those conversations with parents anymore saying, ‘This is incurable, there is no hope.’ But for the first time we will start to offer hope. For the first time, we'll start to offer cures. That's what we are going to keep working towards until we reach that goal.”</em></p>
<p><em>In summary, this promising new drug combination has the potential to change the way DIPG is treated and possibly stop the growth of the horrific tumors by blocking the transport of polyamines into DIPG cells. This type of breakthrough is the reason The Cure Start Now was founded. It provides parents with much needed hope and moves us immensely closer to finding the elusive cure for this monstrous brain cancer.</em></p> https://dipg.org/blog/breakthrough-international-cancer-trial-halts-tumor-growth/ Tue, 23 Feb 2021 14:44:47 -0500 https://dipg.org/9818 In the Lab with Dr. Carl Koschmann: Therapeutic Reversal of Pre-natal Pontine ID1 Signaling in DIPG <p>Researcher at the University of Michigan Hospitals</p>
<p><em>The Cure Starts Now recently sat down with Dr. Carl Koschmann to discuss his research grant for Therapeutic Reversal of Pre-natal Pontine ID1 Signaling in DIPG.</em></p>
<div class="embed-container"><iframe src="https://www.youtube.com/embed//qPBi9WF4EiU" frameborder="0" allowfullscreen=""></iframe></div>
<h3 class="article-title">What is the purpose of your research?</h3>
<p>“Our aim is to get sequencing from as many spots as we could separate from the pons, where the tumor is located, and, effectively, get as much information as we could about each spot, while trying to figure out how the spots were different and how we might see differences in the DNA that has mutated, as well as genes that were over-expressed or under-expressed. We call that heterogeneity within the tumor. At this time, there are very few DIPGs that have been studied in such detail, but, still, there's not a lot that we know. Additionally, we looked for a gene that was expressed called ID1 because we saw a mutation in the gene ACVR1 and the Hawkins lab (Dr. Cynthia Hawkins, Researcher at Sick Kids Hospital and member of the Medical Advisory Council of The Cure Starts Now) had just published a paper on ACVR1 and its upregulation of this gene ID1.”</p>
<h3 class="article-title">How does ID1 affect DIPG tumors?</h3>
<p>“ID1 has been found in a lot of human tumors, including breast cancer and adult glioblastoma to control invasiveness of the tumor, and DIPG is the most invasive tumor. Both our lab and the Hawkins Lab have concluded that it may be involved in DIPG. Not much information beyond that is known. We know that that ACVR1 upregulates ID1, but we don't know in human tumors is ID1 expressed differently in different spots in the tumor, is it expressed in all DIPGs, and is there a way that it can be targeted? In order to continue our quest for these answers, we've developed mouse models in our lab and our best mouse model shows the brain developing which gives us insight into the ID1 gene, and how proteins might bind that and cause it to be upregulated.”</p>
<h3 class="article-title">Have the mouse models given you any indication as to why DIPGs develop?</h3>
<p>“Our best explanation is that when a child’s brainstem develops, which mostly happens prenatally, those cells use ID1 to form a brainstem. Once the brainstem is formed, that signal pathway is turned off because the brainstem doesn't need to keep growing. It's formed by age four to 10 at the latest. What we think happens in DIPG is through various reasons, and we believe one of those might be ACVR1, which causes the cells to turn it back up and there it's inappropriately turned on. When this happens, it begins dividing and invading in a highly aggressive manner, and it's really a signaling pathway that should have been turned off as soon as the brainstem was developed. Our hope is that this is relevant for the DIPGs even beyond the ACVR1 mutation and that cannabidiol (CBD) or future drugs targeting ID1 can be used to slow that down.”</p>
<h3 class="article-title">What does the support of the DIPG Collaborative mean to you and your team?</h3>
<p>“Receiving support from the DIPG Collaborative means so much to me and my lab. The funding to pursue this project is critical to making progress, and knowing it was crowd-sourced from a collaboration of family foundations affected by this disease is even more amazing for us. We are looking forward to continuing to build connections and fight this disease with the DIPG Collaborative for many years to come.”</p> https://dipg.org/blog/in-the-lab-with-dr-carl-koschmann-therapeutic-reversal-of-pre-natal-pontine-id1-signaling-in-dipg/ Mon, 04 Jan 2021 14:21:37 -0500 https://dipg.org/9675 DIPG Re-irradiation Side Effects and Considerations <p><em><a href="https://www.thecurestartsnow.org/" title="thecurestartsnow.org">The Cure Starts Now</a> sat down with Dr. Luke Pater, Associate Professor of Radiation Oncology at the University of Cincinnati Department of Radiation Oncology and Cincinnati Children’s Hospital, to discuss re-irradiation in terms of DIPG, DMG and medulloblastoma.</em></p>

<div class="embed-container"><iframe src="https://www.youtube.com/embed/5xUMIaS3bIk" frameborder="0" allowfullscreen=""></iframe></div>
<p><strong><br>Recently families facing progression of DIPG, DMG and Medulloblastoma have received recommendations to consider re-irradiation, can you explain what this involves?</strong></p>
<p><em>Re-irradiation for brain tumors is very similar to the initial experience for patients. It involves the same planning process with CT simulation and subsequent daily radiotherapy. The difference lies primarily in the dose considerations given that the brain never fully recovers from the initial treatment. This makes further radiotherapy typically of a higher risk than the first course. </em></p>
<p><strong>Is this something new or is it being recommended because of some evidence of efficacy?</strong></p>
<p><em>Re-irradiation is not new; however, it is currently being applied more often. This is largely due to an increase in experience and data showing safety. Multiple publications have come out related to DIPG, DMG and medulloblastoma tumors as well as other intracranial tumors showing that with appropriate precautions, reirradiation can be safely delivered with acceptable risks. </em></p>
<p><em>The benefits are variable pending multiple clinical factors such as the specific tumor type, time from initial treatment and adjuvant chemotherapy/immunotherapy/target therapy options. </em></p>
<p><strong>What should families and patients know about re-irradiation, including side effects?</strong></p>
<p><em>Re-irradiation poses the same risks as would have been discussed at initial course of treatment. This is due to the fact that the same central nervous system tissues will be exposed to radiation. If there is a change in the intracranial site treated, then the particular risks could change. For example, lesions located near the optic apparatus will have risks of radiation induced vision changes and those near the motor cortex may pose a risk of weakness if the patient develops damaged tissue from the exposure. </em></p>
<p><strong>Is there a particular type of radiation to consider?</strong></p>
<p><em>Similar to the upfront setting, the vast majority of radiotherapy for brain tumors is administered externally, meaning from a machine or material producing radiation which is then directed into the patient. Photon and proton radiotherapy are the two most common forms of radiotherapy delivered in this fashion. Tumor location, patient prognosis, possibility of adjuvant therapies, prior radiation treatment and its dose to critical areas, time frame needed to initiate treatment as well as socioeconomic factors, such as ability to get to a particular center for the duration of treatment, all play a role in selection of the best type of radiotherapy for an individual patient. </em></p>
<p><strong>Do some procedures involve combinational therapies?</strong></p>
<p><em>Many retreatment patients are either continuing on, or initiating a new therapy in addition to radiation. This may also be in the context of a clinical trial. Some agents require a break wither before, during or after radiation due to risks of synergistic mechanisms causing an increase in toxicity. </em></p>
<p><strong>Anything else you can tell us about re-irradiation?</strong></p>
<p><em>Clinicians, like patients and their families, are saddened that they have to consider another course of radiation. It is their hope that all patients are tumor free with their upfront treatment. However, clinicians recognize that some of these malignancies recur. Re-irradiation is not always a safe or appropriate consideration, yet they are pleased to offer it when needed and deemed safe. Clinicians continue to refine the optimal doses and techniques to recommend, for example with an active institutional trial for cases DMG that are currently ongoing.</em></p>
<p>To learn more about radiation treatment for DIPG, <a href="/treatment/radiation-therapy/" title="Radiation Therapy">click here</a>.</p> https://dipg.org/blog/dipg-re-irradiation-side-effects-and-considerations/ Mon, 02 Nov 2020 12:55:47 -0500 https://dipg.org/9613 Translating Clinical Trials <p><em>This article originally appeared on <a href="https://www.thecurestartsnow.org/news/translating-clinical-trials/" title="Translating Clinical Trials">thecurestartsnow.org</a></em></p>
<hr>
<p><em>Keith Desserich, Chairman of the Board at The Cure Starts Now, explains clinical trials – what they mean for cancer patients and how they work.</em></p>

<div class="embed-container"><iframe src="https://www.youtube.com/embed/uFIdaDsGnuA" frameborder="0" allowfullscreen=""></iframe></div>
<p>Clinical trials are set up in phases, all designed to focus on an idea. We call these preclinical, or even translational research trials. They are designed to conduct testing on cancer cells in a test tube or mouse modeling.  Ultimately you are trying to determine whether or not this idea, this concept, is actually going to work on cancer cells.</p>
<p>From there, if you're successful, you might end up moving into Phase 0 drug trials. These are very small groups - small numbers of patients. They're quick trials. Sometimes they may not be a real benefit to the patient, but what they're designed to do is to figure out how the drug works and test the concept of “if it will work in a test tube, will it also work in human type of trial?”</p>
<p>The real conventional phases and the conventional trials start with a Phase I trial. This is what we classically call clinical trials. What this is designed to do is determine whether or not the treatment is safe. It's not focused on whether or not the drug works or the concept works. It's about looking at the maximum tolerated dose, or MTD. Effectively, what they do is progress through each one of the patients with a slightly higher dose until they start to see side effects.</p>
<p>From there, if it continues and there is a safe option for it, they move into Phase II clinical trials. Phase II clinical trials are where we start to evaluate whether or not the treatment works. For those, we're talking about 25-100 different patients, and there may even be different treatment options with different dosages and/or combinations of drugs. This is where we're starting to see some of the results of it and determining whether or not there's a potential that we can possibly use this for future treatments against cancer.</p>
<p>The next phase is a Phase III clinical trial. This phase is about determining whether or not it's better than what we currently have as standard treatments. These are often randomized trials with several hundred participants. It can be spread out over many different centers - even internationally. Even the doctor sometimes doesn't know who has received it. This is what we call a double-blind sampling.</p>
<p>If it succeeds through Phase I, II and III, and we can show the dosage actually works, and that it's better than what's currently on the market, then the hope is that the drug can go ahead and get approval through government organizations like the FDA. If it does, even after that, sometimes we’ll even create a Phase IV trial.  This is where we go back to look at approved drugs, and thousands of different people to discern is if there's something that we didn't know. Maybe there's a side effect. Maybe there's something else that it can possibly be used to treat.</p>
<p>Sometimes patients and families can get frustrated just trying to understand which phase a trial is in and whether it's going to benefit them. But, one of the biggest questions that we get asked is, why has it stopped? You see this ongoing right now as we deal with the current pandemic.  There – just like in cancer research - trials are paused. Often these are paused because either they found that there was a side effect or a problem and they don't want to keep introducing it to new patients. Sometimes they find that it wasn’t related to the trial and then the trial opens back up in a few days or weeks.  Sometimes they just reach the patient number or the threshold that they were looking for in their trial framework. Ultimately, it is about safety, because no one wants to treat hundreds, or even thousands of people, without fully identifying whether the drug or treatment actually works.</p>
<p>Other times the reason why treatments are paused is because they may be moving to the next phase, and that's a good thing. It may take a little bit of time to ramp up or change strategies, or even get some participation, to be able to move on to the next phase.</p>
<p>As you go through this, it is important to know that sometimes even the doctors that are participating in the administration of the trial may not even know the results until the trial ends. They may know from their patient group, and they may have some basic understanding of it, but at the end of the day, whether a phase is open or closed really does relate back to you and helps determine whether it's a trial that you want to participate in.</p>
<p>To make it easier, we created a trial update finder at <a href="/treatment/clinical-trials/active-clinical-trials/" title="Active Clinical Trials">dipg.org</a> and <a href="https://www.medulloblastoma.org/treatment/active-clinical-trials/" title="Active Clinical Trials">medulloblastoma.org</a> geared for those families facing a diagnosis of DIPG, DMG or medulloblastoma brain cancers.  There you can actually log in and pull up any trials that are open and/or closed, and return daily results as they open and close.  And with this system, you aren’t just pulling trial data in the U.S.A. but also European, Canada, Australia and New Zealand trials.  It’s all designed to give the patient and family the power of information and the ability to discuss the latest options with their doctor.</p> https://dipg.org/blog/translating-clinical-trials/ Mon, 02 Nov 2020 12:47:50 -0500 https://dipg.org/9612 Dr. Han Shen Discusses Overall Progress on his DIPG Research 
<div class="embed-container"><iframe src="https://www.youtube.com/embed/FRS9u3J9fhA" frameborder="0" allowfullscreen=""></iframe></div>
<p>
<p><em>This article originally appeared on <a href="https://www.thecurestartsnow.org/news/dr-han-shen-discusses-overall-progress-on-his-dipg-research-for-the-cure-starts-now-and-the-dipg-collaborative/" title="Dr. Han Shen Discusses Overall Progress on his DIPG Research for The Cure Starts Now and the DIPG Collaborative">thecurestartsnow.org</a></em></p>
<p>Dr. Han Shen, Westmead Institute for Medical Research, Australia<br>Funded Project: <a href="https://www.thecurestartsnow.org/research/research-and-grants/university-of-sydney-2019-11-18/" title="University of Sydney: 2019-11-18">Targeting hypoxia and mitochondrial metabolism with repurposing drugs as an approach of radiosensitization for diffuse intrinsic pontine gliomas</a><br>Funded Amount: $100,000</p>
<p><em>Dr. Shen provides an update on his recent project with the DIPG Collaborative and The Cure Starts Now and explains how it is providing clues to new treatment options for diffuse instrinsic pontine glioma.</em></p>
<hr>
<p>"<a href="/facts/what-is-dipg/" title="What is DIPG">DIPG</a> is the most malignant childhood primary brain tumor arising from the brain stem. <a href="/treatment/radiation-therapy/" title="Radiation Therapy">Radiotherapy</a> is the only standard treatment, but almost all the DIPG comes back with radial resistance, which means radiotherapy will no longer be able to kill this tumor's cells. To tackle this urgent clinical problem, we're trying to overcome radio resistance of the DIPG tumors, such that radiotherapy can eliminate as many tumor cells as possible. Radiation needs oxygen to kill tumor cells more effectively. And the DIPG tumors are recently reported to be hypoxic, a condition with reduced oxygen level. This biological feature may significantly contribute to radio resistance of DIPG cells.</p>
<p>We, therefore, repurposed antidiabetic drugs to reduce the oxygen consumption rate of the tumor cells so that the hypoxic condition can be improved by sparing more oxygen. The antidiabetic drugs are well tolerated in children, and have long been used in clinic without significant side effects. We have seen very promising effects from this class of drug when they are combined with radiotherapy to kill DIPG tumors.</p>
<p>In the next step, we will be evaluating this combination therapy in our animal model. We're also working on some predictive biomarkers to identify patients who will most likely benefit from this combination treatment. And this way, we will only give the right treatment to the right patient, so patients don't end up receiving treatments with no therapeutic benefit."</p>
<p><span class="button"><a href="https://jeccr.biomedcentral.com/articles/10.1186/s13046-020-01639-2" target="_blank" rel="noopener">Read the Study</a></span></p> https://dipg.org/blog/dr-han-shen-discusses-overall-progress-on-his-dipg-research/ Wed, 22 Jul 2020 08:58:36 -0500 https://dipg.org/9221 DIPG Patient Database with the International DIPG/DMG Registry <p>Data by itself offers us no clues to beating cancer. Even as a result of diligent collection from a research trial it offers little more than a confirmation of hypothesis. But what happens when data gets together? What happens when you collect data organically, across platforms and at the source? There you can detect patterns, form new theories and even cure cancer.</p>
<p>It’s not a novel idea to collect data. For hundreds of years researchers fighting every known disease have assembled facts collected from their observations, hoping to prove or disprove their hypotheses. And while well intended, their efforts were frequently hampered by restrictions of both financial and time. They may collect data about the specific diagnosis, the age of the subject or even the gender or geographic origin, but ultimately it was in pursuit of an answer rather than a question.</p>
<p>In 2011 the fight against <a href="/facts/what-is-dipg/" title="What is DIPG">diffuse intrinsic pontine glioma (DIPG)</a> was no different. Dozens of hospitals each had their own limited databases containing an assortment of information for about 10-20 patients for this rare and elusive form of brain cancer. But what was frequently seen as challenge to DIPG in that it only affected between <a href="/statistics/" title="DIPG Stats">150-300 patients per year</a>, suddenly became a strength. You see with DIPG, no one could collect enough data to make any conclusion, let alone develop a treatment protocol for children desperately in need. Whereas with any other form of cancer one singular hospital could collect enough data on 50-100 patients to establish one pattern, with DIPG no hospital could work alone.</p>
<p>This difficulty became the subject of the International DIPG Symposium, first sponsored by <a href="https://www.thecurestartsnow.org/" title="thecurestartsnow.org">The Cure Starts Now</a> and held in Cincinnati, Ohio in 2011. There we realized that if we were to advance the fight against DIPG we had to first understand the tumor better – and no one hospital or researcher could do it alone. From this convention the <a href="https://dipgregistry.org/" target="_blank" rel="noopener">International DIPG/DMG Registry</a> was born – one of the first of its kind. Unlike other registries, this program was led by both patients and researchers.</p>
<blockquote>
<p>Together over 110 hospitals, countless researchers in over 14 countries and over 70 foundations and chapters came together to form a registry that today defines how many other cancers now collect data.</p>
</blockquote>
<p>Today, support for the Registry is shared through the efforts of the 25+ foundation members of the <a href="https://dipgcollaborative.org/" target="_blank" rel="noopener">DIPG Collaborative</a>. Here the Registry isn’t a factor of what we <em>can</em> collect, or even what we <em>want</em> to prove – instead it is a registry asking everything we can possibly ever want to know. This means we don’t <em>predict</em> patterns, we let the data lead us to the answers. This is what makes a “linked” database different than a random collection of various data inferred from multiple trials. Here patterns are organic, proven both by reliance of a larger sample group and not subject to the prejudice of individual collection procedures that can come with multiple datasets collected from different sample groups that may not match up when compared.</p>
<h3>What has the Registry achieved?</h3>
<p>Already it has advanced not only our understanding of these brain tumors, but it has also fundamentally contributed to how we fight many other cancers. It has helped identify new mutations, offered unimagined drug combinations and demonstrated the true “<a href="https://www.thecurestartsnow.org/who-we-are/mission/" title="Mission">homerun</a>” potential of this previously unknown cancer called DIPG.</p>
<h3>How does it work?</h3>
<p>Ultimately the International DIPG/DMG Registry is a product of its contributors. Those that offer data to the Registry get access to parts of the data, much in the same way that the Human Genome Project was founded. For those researchers with little to no data to contribute, they can apply to the Registry with a stated goal and be granted access to the data to develop new treatment strategies. Over 50+ clinical trials have been initiated because of this work, with some invented purely as a result of analysis of data trends previously unknown.</p>
<p>Still, data collection is only as good as the integrity of the submission process. Unlike other registries that may have a decentralized data entry process, the International DIPG/DMG Registry utilizes a core staff that travels to the hospitals to uniformly enter data while normalizing certain fields to conform to the current framework. There they can also train local staff as well as establish periodic update timelines.</p>
<p>Best of all, it is for the benefit of the patient. As part of this unparalleled effort, the International DIPG/DMG Registry also provides a vital resource to patients and parents in the fight, offering resources to help provide second opinions, central review of <a href="/facts/diagnosis-and-imaging-of-dipg/" title="Diagnosis and Imaging of DIPG">MRIs</a> (to help minimize misdiagnoses) and key treatment data at their fingertips. Even the data collection is patient-focused, with a committee specifically designed to offer feedback on field management so that it can be responsive to new trends and additional data submissions.</p>
<h3>What information does the Registry collect?</h3>
<p>All in all, each patient entry is subject to genomic and tissue analysis, and over 400 clinical questions. Overall this leads to thousands of data set collection measures on over 1100 patients worldwide. One of the most extensive patient registries in the world, this delivers hundreds of new treatment paths, some of which are still unknown, and a foundation of data that is sure to revolutionize not only DIPG research but all of cancer research.</p>
<h3>Interested in joining the Registry?</h3>
<p>All you need to do is visit <a href="http://www.dipgregistry.org">www.dipgregistry.org</a>. There you can sign up (even if your hospital didn’t present the option at diagnosis) and the Registry team will reach out on your behalf to start the process. Already enrolled? You can confirm that you or your child is in the registry simply by calling the phone number on the website or sending a message – it’s that simple. Want to learn more? At <a href="http://www.dipgregistry.org">dipgregistry.org</a> you’ll find a wealth of data and information about the diagnosis and resources at your fingertips.</p> https://dipg.org/blog/dipg-patient-database-with-the-international-dipgdmg-registry/ Wed, 24 Jun 2020 12:35:43 -0500 https://dipg.org/9110 What is the Difference Between DIPG and DMG and what is the H3K27M Histone Mutation? <p><a href="/facts/what-is-dipg/" title="What is DIPG">DIPG (Diffuse Intrinsic Pontine Glioma)</a> and <a href="/facts/what-is-dmg/" title="What is DMG">DMG (Diffuse Midline Glioma)</a> are often categorized together but can have different treatments that can lead to slightly different prognosis paths. Still, much of the science, the research, foundational funding and data for both types of brain tumors are grouped under DIPG, mainly because historically much of the work researching DIPG since around 2012 led to the reclassification and current definitions of DMG.</p>
<p><strong>DIPG</strong> is a type of <a href="https://www.thecurestartsnow.org/brain-tumors/brain-tumor/" title="Brain Tumor">brain tumor</a> found in an area of the brainstem known as the <a href="/facts/what-is-dipg/function-of-the-pons/" title="Pontine Anatomy and Function">pons</a>. The name diffuse intrinsic pontine glioma describes how the tumor grows, where it is found, and what kinds of cells give rise to the tumor. <a href="/facts/diagnosis-and-imaging-of-dipg/" title="Diagnosis and Imaging of DIPG">Diagnoses of DIPG</a> are typically made through an MRI or radiological exam.  Diffuse means that the tumor is not well-contained – it grows out into other tissue so that cancer cells mix with healthy cells. Intrinsic simply means "in", referring to the point or origin. Pontine indicates that the tumor is found in a part of the brainstem called the pons. The pons is responsible for a number of important bodily functions, like breathing, sleeping, bladder control, and balance.  Glioma is a general term for tumors originating from glial cells. Glial cells are found throughout the brain. They make up the white matter of the brain that surrounds and supports the neurons (neurons are cells that carry messages in the brain).  The lowest grade consistent with a DIPG is a grade 2 tumor, but many DIPG tumors will be grade 3 or 4 (the most-aggressive, fastest-growing grades).</p>
<p>Certain factors may lead to improved survival prognosis with those diagnosed with DIPG. They include those patients diagnosed before the age of 3 or after the age of 10, those patients with few symptoms prior to diagnosis and those patients with limited to no growth beyond the pons.</p>
<p>Ultimately some DIPG tumors reviewed by MRI may be termed as “atypical” possibly leading to other diagnosis methodologies such as a biopsy to determine if other treatment options exist.  For this reason it is strongly recommended that patients diagnosed with DIPG seek enrollment in the International DIPG/DMG Registry or the SIOPe DIPG Registry so that the MRI may be centrally reviewed by radiologists with strong experience with these types of tumors.</p>
<p><strong>DMG</strong>, on the other hand, is a clarified diagnosis of a DIPG through a biopsy and more recently through blood biopsy methods.  An astrocytoma located along the midline of the brain, it can also be found in midline structures like the spinal cord or thalamus.  Often these tumors start as “atypical” DIPG and are formally diagnosed as DMG.  Still aggressive, they are often classified as a grade 4 tumor and tend to spread to neighboring tissue. </p>
<p>Starting as early as 2012, due to the surgical advancement of biopsy methods, it was discovered that DMGs also have a specific mutation in the H3F3A gene and are commonly referred to as <strong>H3K27M</strong> (mutant).  As these have received genomic analysis through leading registries such as the <a href="https://dipgregistry.org" target="_blank" rel="noopener">International DIPG/DMG Registry</a> and the SIOPe DIPG Registry, genetic marker identification has led to the discovery of certain drugs and treatments that may be applicable.  This has also led to the findings reported in 2018 in the Journal of Clinical Oncology (<a href="https://www.thecurestartsnow.org/news/characteristics-of-long-term-survivors-of-dipg/" title="Characteristics of Long-Term Survivors of DIPG">https://thecurestartsnow.org/impact/news/characteristics-of-long-term-survivors-of-dipg/</a>) detailing a slightly higher chance of improved prognosis with those patients that present the H3K27M mutation.</p>
<p>While a World Health Organization reclassification of these astrocytomas categorizes DIPG as a subgroup of DMG, most researchers and foundations tend to regard DMGs as a parallel group to DIPG in that the diagnosis of a patient starts with DIPG and then is later identified as a DMG after biopsy or blood biopsy methods.</p>
<p><a href="/facts/diagnosis-and-imaging-of-dipg/" title="Diagnosis and Imaging of DIPG">Learn more</a> about the diagnosis and imaging of DIPG</p> https://dipg.org/blog/what-is-the-difference-between-dipg-and-dmg-and-what-is-the-h3k27m-histone-mutation/ Wed, 17 Jun 2020 12:14:12 -0500 https://dipg.org/9103 Making Memories After Diagnosis <p>Dealing with any brain cancer is never easy.  Often times it can be a battle between the clinical nature of treatments and quality of life as families struggle to adapt to the new norm.  As part of this struggle, it is customary to focus on making memories, whether facing a terminal diagnosis or not.  Even beyond creating memories, often these simple actions can provide an outlet both for children and parents that can take them “beyond the cancer” and even provide therapeutic or emotional stability.  Activities that can often help include:</p>
<ul>
<li>Creating a journal – Whether it is a written or verbal journal, the creation of one can help prioritize values and gain perspective on the fight ahead. Keep in mind that this can be good both for the child, but also the parents.  Although online blogging can be an element of a journal, keep in mind that is important to also have something private that allows the honest reflections to come out without being shared.</li>
<li>Learn a new skill – Find books and activity kits for origami, baking, balloon animal making, paper airplanes or even sewing. These not only are great ways to bond as a family, but can also serve as vital distractions while waiting for doctor’s visits and treatments.  Best of all, it can allow small children a way to contribute.  Keep in mind that it may make sense to involve all members of the family in these skills and not just the patient. </li>
<li>Start a “wish” list – Even beyond tangible items, focus on building a list of all the things your child wants to do after he or she leaves the hospital. Sometimes you may find that it is the simpler items like visiting a special restaurant that hold the most appeal in their eyes.</li>
<li>Find value in the everyday – Look for opportunities to enjoy a picnic lunch or a campout in the backyard. Redecorate their room.  Write a letter to relatives out of town.  Get a joke book and each day have a competition to see who has the best joke.  Take a walk to a bakery for morning donuts.  Find a local observatory and visit one night late during an open house to catch a glimpse of a comet.  Find a field or large parking lot and let a younger child “drive the car” (while obviously you control the pedals).  Any adult task can see like a big dream to a child that hasn’t tried it before.</li>
<li>Make a keepsake – This could be as simple as a hand print or foot print cement paver or even a box of favorite items. Keep this in your child’s room for them to add to as they see fit.</li>
<li>Inspire the community – While in the fight you’ll no doubt find your community willing to support. Ask for their help in support of an art auction to benefit cancer research, do a shaving fundraiser, do a <a href="https://www.thecurestartsnow.org/how-to-help/fundraise/" title="Fundraisers">Caps for the Cure</a> event at the school or simply have them send your child messages of support through the mail.  All of these tell your child they are not alone and they haven’t lost their friends while they are battling.</li>
</ul>
<p>Above all, have fun.  Memories aren’t as much about what you do as much as they are about how you and your child feels about the experience.  Remember that humor, while difficult, is also a way to deal with cancer.  Inspire them to laugh, smile and have fun – and with it, they’ll remember they too are still a child.</p> https://dipg.org/blog/making-memories-after-diagnosis/ Wed, 08 Apr 2020 15:44:04 -0500 https://dipg.org/8964 Grieving Daily and How to Cope <p><em>One parent’s personal journey to deal with the loss of your child from cancer.</em></p>
<p>Losing a child is nothing you can prepare for.  Often you never want to admit it even after it happens.  I know, I’ve been there.  After losing our daughter to DIPG, our response was to form a community and over the years we’ve met many other families that have walked the same path as we do daily.  And while I don’t ever profess to have the solution to grieving, we have found ways to cope that many other families have used as well. </p>
<ul>
<li>We choose to celebrate only her birthday. After her death, my wife and I made a vow never to celebrate the cancer that took her, only the blessing of her birth.  Certainly we know the day we lost her, the day of diagnosis and even each step of the therapy, but unless forced to we try to focus on the good memories.  In celebration of her birthday we release balloons carrying a simple card.  It is a simple celebration and there will be tears, but it is how we choose to remember her.  Smiling, happy and in joy. </li>
<li>We find a way to deal with loss over the holidays. For us, it is in the form of a special tree we decorate as a family in our kitchen that holds ornaments made from the memories she left us with.  We felt this was important because it kept her in our hearts during a difficult season.  In truth it is also a sense of joy.  We love looking at the tree and reliving what she left us with.  To make sure that we also show our love for our other two girls, they too have trees of their own.</li>
<li>My wife and I made a pact to never be depressed on the same day. Early on, we even had to claim the day the moment we woke up, thereby forcing the other to paint on a smile and spend the day trying to pull the other one up.  This kept us from building on an avalanche of depression and sadness that might have torn us apart.  Ironically even the action of “claiming” a day was silly enough that it too even helped to keep us looking at the positives that our daughter showed us during her 5 years.</li>
<li>We choose to help and connect with other children and families. Even the simple effort of being involved is an act of therapy to combat grieving.  And just when you think it is too painful to meet another child or talk with another family you often find it can be where healing starts.  Even we were hesitant to help, meet or talk with other families initially.  Now we know that doing so is like spending another day with our own child.</li>
</ul>
<p>These are not lessons for everyone, just us.  You may have other suggestions and perhaps this is the forum to share those suggestions.  And through us all we may heal families as well as our children. </p>
<p><em>Have suggestions of your own? Please <a href="/contact/" title="Contact">contact us</a> and let us know.</em></p> https://dipg.org/blog/grieving-daily-and-how-to-cope/ Wed, 01 Apr 2020 13:28:12 -0500 https://dipg.org/8931 Communication: When a DIPG Child Can No Longer Speak <p><em>Content used with permission from the <a href="https://www.acco.org/" target="_blank" rel="noopener">American Childhood Cancer Organization</a>. Hoffman, Ruth, editor. Understanding The Journey: A Parent’s Guide to DIPG. American Childhood Cancer Organization, 2012. Print.<br />Contributing Authors: David Brownstone, MSW, RSW, Caelyn Kaise, MHSc, SLP(C), Reg.CASLPO, Ceilidh Eaton Russell, CCLS, MSc (candidate)</em></p>
<p>Supporting a child or teenager who has a brain tumor is an incredibly important and difficult job. And trying to help them understand and live with their changing abilities can be overwhelming, especially when caregivers naturally struggle with these changes themselves. The situation is also a challenge because while a child’s physical abilities to communicate—including the ability to produce speech and to express thoughts and feelings—can change, cognitive abilities often stay intact. So if a child or teenager has trouble communicating because of a brain tumor, the task of supporting them becomes even more complex.</p>
<p>Family members and caregivers who have been in this situation often express that they did not know what to do or where to start, and they often felt helpless and frustrated. But in the end they did it. With time, patience, creativity, and support, families find ways to communicate with their children and teenagers with brain tumors, even though these young patients had, or have, trouble speaking. </p>
<p>This section includes “lessons learned” from talking with 14 families about their experiences, as well as our team’s experiences working with families of children with brain tumors. (Note: Our team only interviewed families of patients younger than age 13 and our examples reflect this. While the examples may not be relevant to teens, as many issues and struggles are unique to that age group, the communication strategies are similar and can be adapted for teens.)</p>
<p>The parents we spoke with generously shared the creative strategies and tools they developed, the most important conversations they had, and the most important lessons they learned. When we began to talk with these parents, our goal was to develop a new communication tool, yet they taught us that although tools are helpful, in the end, direct communication is more valued and helpful. Families encouraged us to share strategies and resources with families like yours so that others facing this stage of brain tumors will have ideas about where to start, what to try, and know that they—and you—are not alone.</p>
<p>Of course every family and every child is unique, each with their own values, philosophies, experiences, and backgrounds. Some of your family’s experiences may be very different from those of the families we interviewed. However, some of the situations they faced or the strategies they tried may be similar to yours or helpful to you. We encourage you to think about the ideas outlined in this section and to use or modify them so they work for your family and are well suited to your child’s age and developmental stage. </p>
<p>Most of all, the families we talked to and the members of our team sincerely hope that sharing this information will help you and your family feel, at the very least, a little more prepared and supported during this difficult time.</p>
<h2>Quick Tips</h2>
<p><strong>To help you focus on how to approach and enhance communication with your child, here are a few quick tips to think about.</strong></p>
<ul>
<li>Practice communication strategies <strong>before</strong> your child needs to use them.</li>
<li>Practice more than one signal for “yes;” no response can be used to mean “no.”</li>
<li>Start by asking broad questions, and then ask more and more specific questions as you get an idea as to what your child is thinking about or wanting to say.</li>
<li>Use simple sentences to get to the main point. For example, ask “Are you hungry?” instead of “Do you want something for dinner?” Remember the “KIS” principle: “Keep It Simple.”</li>
<li>Remind your child what the “yes” signal is before asking each question.</li>
<li>Wait longer than usual for your child to respond.</li>
<li>If your child has a hard time responding, repeat the question or simplify it. For example, if you’ve asked “Are you hungry?” simplify by saying, “Hungry?”</li>
<li>To make sure your child’s message is understood correctly, repeat what you think he said. For example, “Okay, you are hungry,” or “So you’re not hungry.” This gives your child a chance to confirm that his message was interpreted correctly.</li>
<li>Be patient with yourself, your child, and the process.</li>
<li>When exploring emotional issues, ensure that you understand your child’s unique perspective rather than thinking about it only from an adult perspective. In other words, focus on how your child is thinking and feeling, not how you would think or feel in the same situation.</li>
</ul>
<h2>Communication</h2>
<h3>Preparing for the unexpected</h3>
<p>It is hard to prepare for something when you don’t know what to expect. Brain tumors affect children’s abilities in different ways at different times, but some changes are more common than others and can be anticipated. For example, speech often starts sounding slurred and can be difficult to understand due to weakness or difficulty coordinating the lips, tongue, and jaw. Children’s abilities to use their arms and hands may also become compromised, making it difficult for them to write, draw, or point.</p>
<p>Regardless of the kinds of difficulties children with diffuse intrinsic pontine gliomas (DIPGs) have, the parents we interviewed agreed that two important strategies helped maximize communication with them.</p>
<ol>
<li><strong>Learn and practice ways your child can communicate without speech before your child needs to use them</strong>. This is not always easy. Children can be reluctant to use communication strategies before they absolutely have to, and parents and children often do not want to think about a time when these strategies will be necessary. This reticence is natural and understandable. However, the patience and concentration that are needed to learn a new skill may not be present once your child’s energy and abilities are declining.</li>
<li><strong>Practice more than one way of communicating without words</strong>. This way, if some of your child’s abilities change in an unexpected way, she can continue to communicate using another familiar means. When practicing other ways to communicate, it is often useful to find a way to adapt a current communication tool or technique to suit your child’s changing abilities rather than switching to a brand new system. By adapting a strategy that children and families are more familiar with, their experiences serve as “practice” and they may feel more comfortable and confident in their abilities to use it.</li>
</ol>
<p>In this section, we present some concrete examples of communication tools and strategies to use with children who have a DIPG. This is in no way an exhaustive list, but it serves as a stepping stone to understand how to maximize communication.</p>
<p><a class="btn" href="/media/tpghxetm/communicationbook.pdf" title="Communicationbook" data-anchor="#">Communication Board</a></p>
<h3>Different ways to ask questions</h3>
<p>Two techniques that are very useful when helping children express a wide range of messages are:</p>
<ol>
<li>Offering two clear choices.</li>
<li>Asking questions that can be answered with a “yes” or “no.”</li>
</ol>
<p>These techniques require you to ask clear and carefully worded questions and will take thought and practice.</p>
<h3>Offering two clear choices</h3>
<p>No matter what a child’s functional ability is, he/she is likely to be able to choose between two things, whether by pointing at or by looking at different objects. It is important to clearly tell your child what the two choices are and then ask your child to show you which one he wants. </p>
<p>For example: A parent can hold chocolate milk in one hand and juice in the other. After showing them to the child and saying what is in each hand, the parent then asks the child which one he/she would like, reminding him/her to point or look at the drink he/she wants. Once the child has made a choice, the parent should double-check by asking, “Do you mean that you want the juice?” then wait for him/her to show that he/she means “Yes.” </p>
<p>When a child is choosing between two things that you cannot show him/her, try asking a series of questions to find out what he/she wants. For example:</p>
<ol>
<li>“I wonder if you would rather go for a walk or take a bath?”</li>
<li>“I’ll ask you about one thing at a time, and then I’ll wait after each one in case you want to say “yes.”</li>
<li>“So, want to go for a walk?” After asking this question, pause for at least 10 seconds.</li>
<li>If your child does not respond, say, “Okay. Want to take a bath?”</li>
</ol>
<p>It may take your child longer than usual to make a choice, so remember to wait for a response. If your child does not respond, here are a few things to try.</p>
<ol>
<li>Ask if he/she needs you to remind him/her of the signal for “yes.”</li>
<li>Ask if he/she needs you to remind him/her, what the options are, then wait for him/her to respond. If he/she says “yes,” repeat the series of questions above and wait for his/her response.</li>
<li>Ask if he/she does not want either of the choices that were offered, and wait for him/her to respond. If he/she says “yes,” try to think of other options he/she may prefer.</li>
</ol>
<p>Offering choices helps children feel like they have some control. Although with this method it can take a long time to find out what your child wants, it is usually worth the extra effort.</p>
<h3>Using “Yes” or “No” questions</h3>
<p>Even when it’s very difficult for children to choose between two things, caregivers can help them express themselves by asking questions that can be answered with a simple “yes” or “no.”</p>
<p>Children can show they mean “yes” in a range of ways, including:</p>
<ul>
<li>Nodding their heads.</li>
<li>Giving a “thumbs up.”</li>
<li>Wiggling a finger up and down.</li>
<li>Raising their eyebrows.</li>
<li>Looking up (like nodding with their eyes).</li>
<li>Wrinkling their nose.</li>
<li>Wiggling their toes or moving a foot.</li>
</ul>
<p><strong>**Remember to practice more than one signal for “yes!”</strong></p>
<p>Any part of the body that the child can control can be used as a signal for “yes.” <strong>Instead of making a second signal for “no,” it is easier to assume that if the child doesn’t say “yes,” he means “no.”</strong> This creates less confusion about which signal to use for which word. When practicing this technique, ask your child to choose a couple of signals, then ask him/her five “yes” or “no” questions that you know the answers to and make sure your answers match his/her signals. If they match, you’re ready to start! </p>
<p>Some questions may have more than one meaning, so it is very important to ask in a way that is clear and direct. For example, asking your child, “How are you feeling?” can be confusing, because it could refer to physical or emotional “feelings.” Instead be specific; ask “Are you sad?” or “Does your body feel okay?” This allows your child to respond with a clear “yes” or “no.”</p>
<p><strong>When there are fewer clues about what your child wants or needs, start by asking broad questions, then ask more and more specific questions based on your child’s responses</strong>. For example, if your child seemed upset you could start by asking, “Is something bothering you?” If the answer is “yes,” you can ask more specific questions one at a time until she says “yes” again. The following is an example of a progressive series of questions.</p>
<ol>
<li>“Is it something in your body that’s bothering you?”</li>
</ol>
<ul>
<li>If she says “yes,” ask, “Is it your head?” or “Is it your stomach?” continuing to ask about different body parts until she says “yes.” Remember to pause after each question to wait for a response.</li>
<li>Once your child says “yes” about a particular body part, ask, “Is it sore?” “Is it itchy?” or “Is it hot?” etc.</li>
</ul>
<p>If he/she does not say “yes” to any part of the body, say “Okay, maybe it’s not something in your body that’s bothering you. Are you feeling upset about something?” If he/she says, “yes,” ask questions about specific feelings, such as, “Are you sad? Are you feeling frustrated?” until he/she says “yes” to something.If your child does not say “yes,” try asking, “Is it something you’re thinking about?” or “Are you worried about something?”</p>
<p>This example illustrates that it is often easier to know what to ask when the topic is concrete, such as physical sensations or finding out what a child wants to do. Talking about more abstract concepts, such as emotions and ideas can be much more complicated because there are many more possible questions. Because of this, you will need to ask a lot more questions when discussing these topics. </p>
<p>If you continue to ask questions without being able to figure out what your child wants and he/she becomes frustrated, it is good to talk with your child and explain in the following way.</p>
<ol>
<li>“I know that you know what you want to say. This is really hard for both of us, but I want to try to help.”
<ul>
<li>Then ask, “Should I keep trying to figure out what you’re thinking or should we take a break? I’m going to ask you that again and wait for you to show me “yes” after the one that you want me to do.”
<ul>
<li>Then repeat these two options, pausing in between for your child’s response.</li>
</ul>
</li>
</ul>
</li>
</ol>
<p>It is especially important to be patient with the process, and with yourself and your child, during these discussions.</p>
<h3>Figuring out what to ask</h3>
<p>Although interactions may feel different when a child has trouble speaking, he/she is still the same person as before. Try to consider past experiences with your child, including his/her typical behaviors, preferences and needs, to give you clues about what he/she would want now. </p>
<h3>Facial expressions and body language</h3>
<p>When you recognize a familiar facial expression, it probably means the same thing it used to mean. In addition to telling you about their feelings and moods, a child’s face or body can also show you whether he/she is comfortable (through a relaxed body) or uncomfortable (through a tense body or face). </p>
<p>Tumors may affect facial muscles for some children, making facial expressions look different than they used to. However, parents often say that even with these changes they can recognize what their child is expressing, especially because the children’s eyes continue to show a lot of emotions. </p>
<h3>Routines and preferences</h3>
<p>Time of day, familiar routines and the context of a situation can offer clues about whether your child is tired, hungry, wants to bathe, go outside, or play. Although children may have to do these things in a different way than they used to, if they are losing some of their abilities it is still helpful and comforting for them to participate in familiar activities as frequently as possible. Thinking about the situation—where you are, who’s around, and what you are doing—will also help narrow down the questions or the needs the child may currently have.</p>
<p>We have found that while it may feel like there are a million things a child could want or need; it is often the simplest things that the child wants. Try to always start with basic questions, such as whether the child wants to sit up or change position. If the child has a communication tool, check to see if that’s what the child is asking for. </p>
<h3>Coping with the challenges of communication</h3>
<p>If you feel daunted, frustrated or overwhelmed, try to remember that although this can be an incredibly difficult task, <strong>YOU CAN DO IT</strong>. In fact, you have probably done it already, before your child learned how to speak as a baby. Although he/she has developed intellectually since that time and now has more complex ideas to express, remember that with your help, your child was able to learn a new way of communicating once before and will again. Try to be patient with yourself, keeping in mind that the difficulties you may face with this new way of communicating are caused by this enormously challenging situation; always remember that you’re doing the best job you can. If you need to, take breaks to manage your own stress. Young people can sense your anxiety, stress, or frustration, so allow yourself the time to refocus and know that this is a challenging process for any parent.</p>
<h2>Communication Strategies</h2>
<p>Families have shared with us a range of creative communication strategies they have used, which fall into two categories:</p>
<ol>
<li><strong>Tools: </strong>meaning there is an actual “thing” to help the child express himself.</li>
<li><strong>Techniques:</strong> referring to a special way of communicating without using a physical tool.</li>
</ol>
<p><strong>Please note:</strong> this may be an overwhelming list of possibilities. We’ve included these to assist you in finding what will work best in your situation; you are not expected to use them all.</p>
<p><strong>Tools</strong></p>
<ul>
<li><strong>A bell or buzzer:</strong> These can be used to get someone’s attention if the child is in a different room, or be used as a way to say “yes.”</li>
<li><strong>Paper and pencil/markers:</strong> For kids who have learned to print or write, this is a familiar way to express their thoughts.</li>
<li><strong>Magna Doodle:</strong> Children can write messages, draw pictures, or draw an arrow to point the Magna Doodle at what they want. Kids typically enjoy these because they are familiar and feel like using a toy rather than a “special device,” and because they are easy to use.</li>
<li><strong>Laptop/tablet: </strong>Children who know how to type like using laptops because they can send emails or type messages for someone to read while they type. They also tend to like that they can watch movies on the same device, although for some the laptops are too heavy.</li>
<li><strong>Keyboard:</strong> A few children have used regular keyboards that are not connected to computers. They press a series of letters to spell a message while someone else watches and reads what they typed. Special keyboards that have the letters in alphabetical order can also be used. These tools help children express a wide range of messages, but some people who have used the keyboards say it can take a long time to type messages and a child can forget what letters they have already typed. Many families create their own keyboards by clearly writing the alphabet in large letters on a piece of paper or cardboard for the child to point to.</li>
<li><strong>Picture books or boards:</strong> These can be like scrapbooks or a piece of cardboard with photos or drawings and words, made by family and friends. Children can point to a picture or word, or parents scroll through, pointing to one message at a time and waiting for the child to say “yes” when they point at the right message. Some people find it frustrating to search for the right message, especially when the child wants to say something that is not included in the book or board.</li>
<li><strong>Feelings faces:</strong> A chart showing a variety of faces, including happy, sad, angry, frustrated, lonely, bored, excited, hopeful, etc., can help children to express themselves by pointing (or having their parents point) to the feeling they are having. The number of faces to include depends on a child’s age and abilities; faces can be added or taken away as a child’s needs change.</li>
<li><strong>High-tech communication devices:</strong> These devices usually have buttons for children to press, with each button causing a different message to be spoken, allowing kids to express a range of messages. While some children like using these, others do not, because certain devices are complicated, seem unfamiliar, and are sometimes hard to use or learn or feel impersonal.</li>
</ul>
<h3>Tips about tools</h3>
<ul>
<li>For kids who are able to read, include words as well as pictures or symbols in communication tools. Children will associate the words with the symbols so if it later becomes difficult to read the words, they are still familiar with the meaning of the symbols.</li>
<li>Include your child in creating their communication tools (such as books, boards, high-tech devices) as much as possible. By choosing which images will represent different words, feelings, activities, etc., your child maintains some control and will feel more connected and involved in the process. Involving children also promotes familiarity and makes them feel more invested in using the tools.</li>
<li>As much as possible, consider your child’s individual voice. For some families this means recording the child’s voice on a high-tech device or a voice recorder, saying common messages so he/she can hear his/her own voice. Families who have done this typically treasure the recording and encourage other families to do this as early as possible. When such a recording is not possible, families can record another child’s voice that sounds similar in age and gender. Many parents have said that it wasn’t just about the sound of the child’s voice but the kinds of things that he/she would have wanted to say. By including jokes, sayings or common phrases, a child’s unique personality is able to continue shining through in a meaningful way.</li>
<li>If you are using a tool that has preset messages or pictures in it, such as a picture book or a high tech device, your child may want to express something that is not included in the tool. In this case, be sure to ask your child about messages that are not in the tool. Ask, “Is it something that isn’t in here?” to find out if that’s the case. Then you can use “yes” or “no” questions to find out what your child is thinking, and to decide whether or not to add that new message to the tool.</li>
</ul>
<h3>Techniques</h3>
<p>Most families we interviewed said they use special ways of asking questions, such as offering two choices, asking “yes” or “no” questions, and reading their children’s body language and facial expressions. Some families also used the following techniques:</p>
<ul>
<li><strong>Signs and signals:</strong> They use their hands or their faces, or adapt sign language, especially by using the first letter of a person’s name to refer to that person. An example of a signal would be a child holding an imaginary cup up to their mouth to show she is thirsty.</li>
<li><strong>Pointing:</strong> Children can point to things to show what they want, such as pointing to a window to say they want to go outside. If a child is uncomfortable, he/she can point to the part of his/her body, or a picture of a body, to show others where he/she feels discomfort.</li>
<li><strong>Lip reading:</strong> Some children have trouble producing sounds or words but are still able to make the shape of words with their mouths. For children who have trouble hearing, a few parents say that by mouthing words slowly, and exaggerating their mouth’s movements, their children can figure out what they are saying.</li>
<li><strong>Physical presence, touch and hugs:</strong> When it is too hard to use words, being close to one another and sharing affection are great ways of expressing emotions and love.</li>
<li><strong>Lists:</strong> Many parents said it was very important to keep three kinds of lists, and to keep adding to them, including:</li>
</ul>
<ol>
<li>Signals, such as what the signals look like and what they mean, (i.e., “pointing to mouth means hungry or thirsty”).</li>
<li>Common questions that caregivers ask, things that the child frequently asks or says, or issues or needs that the child has.</li>
<li>Clues to a child’s needs, such as body language, time of day, or anything else that can help caregivers figure out what the child wants or needs.</li>
</ol>
<p>These lists may help you remember or think of what to ask, and improve communication when someone else, who is less familiar with his communication strategies, is caring for your child.</p>
<h3>Tips about communication in general</h3>
<ul>
<li>When possible, try to adapt familiar communication tools to meet a child’s changing needs rather than introducing new tools.</li>
<li>Keep talking <strong>to your child</strong>. Avoid asking questions that they can’t answer; stick with “yes” or “no” questions, but keep including your child and asking her opinions.</li>
<li>Teach siblings how to communicate using the new tools or techniques. This helps to encourage interaction and maintain sibling connection.</li>
<li>Use communication strategies to play games with your child to improve comfort using the strategies. Children who are able to say “yes” can play twenty questions; children who are using a communication book can choose a message while others try to guess what it is. Play charades by having your child point out one message for another person to act out.</li>
<li>Try to be patient with yourself, your child, and the process. There is no easy way to do this. Try to stay calm, take deep breaths, and take care of yourself. Parents and their children can often feel frustrated and helpless. In the midst of this difficult process, one of the most important things for children to hear is: “I know that you know what you want to say.”</li>
</ul>
<h3>Challenges</h3>
<p>Some children are reluctant to use tools before they are needed and may feel the tools undermine their current abilities. If a child refuses to use a certain tool, try telling him/her that he/she does not have to use it right now but that you want to show him/her how it works anyway. That way if you need to reintroduce it later, it will be familiar.</p>
<p>While we do not want to force children to use a communication tool they don’t want to use, if their abilities change unexpectedly and they have not already had the chance to learn and practice communication strategies, it can be even more challenging for them to use new techniques to express themselves. For these reasons, we recommend that families talk about and practice a range of communication strategies rather than focusing only on one. </p>
<p>Try adopting old strategies as much as possible so your child can keep using the same approach in a slightly different way, rather than learning something completely new. For example, start with a picture board with many small pictures, and if your child’s vision starts to change, narrow down the number of pictures, spread them out, and enlarge them so they’re easier to see. Practicing a variety of techniques and adapting them (rather than starting something totally different) are ways of helping children feel familiar with different communication strategies. </p>
<p>Sometimes you may need to communicate in the midst of a crisis situation or while your child is distressed; these moments may be brought on by physical and/or emotional pain that the child is feeling. It is important to know how to calm yourself and your child so you will be able to work together and communicate effectively to manage these situations. Practice calming techniques together on a regular basis. Some examples are deep breathing, blowing bubbles, soothing touch, or focusing on each other. These techniques are helpful because when you and your child are calm, you will be able to communicate more effectively, which is especially important in an urgent situation.</p>
<h3>Deciding what to try</h3>
<p>Choosing a strategy for communicating with your child depends upon the child’s abilities and personal preferences. Consult with your child’s team to find out what strategies might be the best suited to your child’s needs, abilities, and preferences. Then, considering your child’s personality, decide which ones to try. Together you can decide which ones work best. Some children are open to using familiar tools that feel like play, such as drawing, writing, or using a Magna Doodle. Remember that the emphasis of communication should be on the connection between you and your child rather than the content of the messages.</p>
<p>While it is often easier for a child to keep doing what is familiar rather than trying something new, sometimes there is no choice. If a communication strategy is no longer working, or if your child is getting too frustrated, it is time for a change!</p>
<h2>Communication Topics</h2>
<p>Parents we spoke with felt it was important to be able to talk about “everything:” physical comfort, feelings, worries and “regular conversations” about friends, jokes, hobbies, and daily activities. Some messages were more concrete—hunger, discomfort—which are easier for children to express by pointing to a picture or an object, or answering “yes” or “no” questions. Abstract topics such as emotions, spirituality, and the future are more difficult to discuss, requiring caregivers to ask more questions in order to help a child express what he/she is thinking and feeling.</p>
<p>Parents described some of the most important topics they addressed with their children, and strategies they used to do so. It may seem overwhelming to think about all of the topics or messages your child may want to express, and the charts, lists, or strategies you could create. Remember that becoming familiar with communication strategies will happen over time and with support from family, friends, and your child’s team at the hospital.</p>
<p>The way you communicate throughout this time will be shaped by your family’s values, belief systems, personalities, and previous experiences communicating, especially about difficult topics. While we know sharing information and discussing feelings helps children and families cope and support one another, there is no “right” way to go through this experience.</p>
<h3>Physical and health needs</h3>
<p>Parents described important conversations they’d had with their children about how their abilities had changed and that the changes would continue. Although these can be difficult discussions, children cope better when their questions are answered than when they are left to wonder and make up their own answers.</p>
<h3>Medical needs</h3>
<p>Children we spoke with wanted to know about medical equipment, tests, and procedures, including the use of different medical equipment, how it works, and what procedures will feel like. When a procedure will be uncomfortable, people may be afraid of upsetting children by telling them the truth. Unfortunately, when children are caught off guard by a needle or other unpleasant things, they do not have the chance to react and then calm down and then try to cope with the experience before it is time for the procedure. Children may also begin to doubt caregivers and to think that things are being kept from him even when they’re not.</p>
<p>Children benefit from knowing what to expect—where a procedure will take place, who will be there, what steps are involved, and what it will feel like. This information gives kids a chance to prepare for what will happen and practice coping strategies, such as deep breathing, blowing bubbles, holding your hand, listening to music or a story, using guided imagery, or squeezing a stress-ball. Children may also benefit by watching a simulated procedure on a play-therapy doll or stuffed animal.</p>
<p>When explaining medical procedures to children, it is important to be honest, to use language that is clear and simple, and to check in with them by asking “Does that make sense or would you like me to try to explain it in a different way?” </p>
<p>Children may also want to know why treatments are needed, how to know if they’re working, and what happens if they don’t work. When a child finishes or stops a certain treatment, he/she may wonder what that means, whether it is because the disease is gone or because it can’t be cured. These are difficult concepts to explain, but if a child has a question, it is better to explore the answers honestly and openly together than for a child to rely on his own imagination. These issues can be overwhelming for children to think about on their own; talking about them together offers reassurance and support for the child even when there aren’t clear-cut answers.</p>
<p>It is helpful to talk to children about what kinds of information they want to be told about their illness, treatment, and side effects, before communication gets more difficult. That way you have an idea of what your child wants to know about and you can continue to provide the information your child wants and needs throughout his/her journey.</p>
<h3>Emotions</h3>
<p>To talk about feelings you can use charts with pictures of different facial expressions or use a list of feelings. Your child can point to the face that shows how he/she feels, or you can point and look for your child to indicate when the right answer is selected.</p>
<p>It is helpful to offer a wide range of feelings so your child can express his/her true emotions, rather than settling for one that is “close but not quite right.” On the other hand, if your child is getting overwhelmed, use a shorter list or chart with four to eight simpler feelings such as happy, sad, scared, mad, bored, etc. Try to use words that are familiar to your child and make sense given her age. If possible, try to include your child in creating this list of feelings to ensure she is familiar with all the words and that she has some control. </p>
<h3>Strategies for talking about emotions</h3>
<p>Ask your child if he/she feels a certain way. For example, “Are you feeling happy?” or “You look frustrated, are you feeling that way?” This offers your child the chance to express an emotion and to offer some control by answering “yes” or “no.”</p>
<p>Share how you are feeling and then ask your child whether he/she is feeling the same way. This helps a child express his feelings and reassures him/her that others feel that way, too. However, it is important to recognize that children may feel differently than the people around them; this is perfectly normal. Try to say something like, “I’ve been feeling pretty sad and I wonder if you have, too.  You know, it’s okay to feel sad and it’s okay not to, too.” </p>
<p>Children need to be reassured that all of the feelings they have, no matter how intense, unfamiliar or conflicted, are natural. Let your child know that even though these are not “easy” feelings to have, they are natural, understandable, and “okay.” A lot of emotional messages can be conveyed through hugs and touch. Being close and making eye contact also helps children feel more connected and comforted. </p>
<h3>Activities</h3>
<p>When a child’s abilities change what he/she is able to do or play with, it is helpful to have a list of things that your child <strong>can</strong> do to choose from. Lists also help parents so they don’t always have to remember all of the options. Some of the most common activities that parents we interviewed said their children enjoyed were: listening to music, watching a movie, hearing a story, going outside, playing a game, writing to someone, making food, or visiting friends.</p>
<h3>People and pets</h3>
<p>Maintaining relationships with family and friends is very important for young people. Parents and caregivers can help by giving children a way to ask to see a special person, or to send them a message. Create a chart with names and photos of family members, friends, and even pets, for children to point to.</p>
<p>Many children ask about people they know who have died, wondering where they are now, whether they are “okay” and commenting that they miss these people. It is natural for a child who has a serious illness to start thinking about life and death and loved ones who have died. It can be a safe way to wonder about these things, an indirect way for children to show you that they’re thinking about death, and a way to start a difficult conversation. Also, when children realize their loved ones are still remembered and loved after they’ve died, it offers them the reassurance that they, too, will be remembered and loved after their death.</p>
<h2>The Future and Spirituality</h2>
<p>It is natural for children to wonder about these topics, especially as they feel their bodies changing and sense the emotions in the people around them. It can be very hard for children to initiate conversations, especially when they fear that talking about these things will be upsetting for others. They may ask questions in indirect ways, such as asking about the death of a pet, or the death of someone else, or general questions about what happens after you die. Because of how difficult it can be for children to bring up these topics, it is very important to support them when they want to have these conversations, rather than avoiding or changing the subject.</p>
<p>If your child has questions about death and spirituality, try to answer his/her questions as honestly, clearly and calmly as you can. He/she may ask you questions you don’t have answers to. That’s okay. You can say you’re not sure, that many people wonder about questions like that, and that it’s okay to wonder about these things together, even without finding any answers.</p>
<p>In interviewing parents, some of the biggest struggles they said they faced were about whether or not to tell a child that he/she could or would die and how to do that. Research and our own clinical experiences suggest that children and families benefit from having open and honest conversations. Families who do this said they did not later regret having had these conversations. Many parents said that even though it was so hard for them to talk about these things, after they had spoken with their child about death or spirituality, they realized the child seemed comforted and relieved, and that they—as parents—did as well. Whether you decide to talk with your child about death and spirituality and how you do this is up to you and will be a very personal decision based on your experiences and your beliefs.</p>
<h3>About the future</h3>
<p>For some children, thinking about the future can include writing a will, exploring organ donation, or planning a memorial celebration. Parents often worry that talking about these things with their children will cause them to lose hope. On the contrary, if a child is already thinking about these things, the opportunity to share his/her thoughts and feelings about them with loved ones can offer tremendous comfort and relief, a sense of control, and the opportunity to plan his/her own legacy.</p>
<p>You can also talk about how you will remember and honor your child at holidays, family events, birthdays, and other special times. Some families have a special meal or celebration, wear a special piece of clothing or jewelry, listen to a certain song or musician, or make up their own unique rituals for these special times. Others may plant a memorial tree or garden, hold a fundraiser, or create a scholarship in the child’s name. Some children have their own ideas about how they want their family to remember them, and many children want to be involved in family discussions about this. Not only does it reassure the child that he/she will not be forgotten but it gives him/her a clear idea of exactly how her family will remember and feel connected to him/her.</p>
<h3>About spirituality</h3>
<p>Some children ask their parents questions about what happens after someone dies, what they will do when they are in heaven, or how their families will feel their presence. Whatever your beliefs are, you can share them with your child. Many people don’t know what they believe, or may believe that there is nothing after death. If this is the case for you, you can explain to your child that many people have different beliefs and that you’re not sure what will happen, or that you’re not sure whether any of them will happen; either way, ask your child what he/she thinks, or would like to think.</p>
<p>Regardless of what you believe about what happens after death, you can talk with your child about how he/she will always be part of your family even though he/she will not be physically present. Things he/she taught others, personality traits, his/her values, and hobbies that he/she shared with others, are all deeply meaningful ways that his/her life will continue to impact his/her loved ones.</p>
<h2>Caring for Your Children and Yourselves</h2>
<p>This is a very difficult and challenging experience for parents and children. Developing strategies to manage the impact of the ongoing loss of abilities can be as important as developing communication strategies. This section is meant to assist parents and caregivers in thinking about and addressing some of these challenges.</p>
<h3>Supporting the child with a brain tumor</h3>
<p>Here are examples of some of the challenges and concerns that parents described and the things that can help kids deal with them. Strategies from the previous sections will assist in dealing with these issues.</p>
<h3>Feeling frustrated</h3>
<p>When a child finds that he/she can no longer do something that used to be easy to do, or realizes that so much about his/her body or his/her life is beyond his/her control, frustration is a natural reaction. The loss of independence or needing help with things such as eating or going to the bathroom can be very upsetting, especially as children realize they will not regain the ability to do those things on their own. This kind of frustration might be expressed in different ways, such as being impatient or getting angry. One way to help children cope with these feelings is to help them find ways to express themselves with words added to a communication board or book, or physically using a stress ball made out of Play-Doh.</p>
<p>People often want to cheer kids up when they are feeling upset; sometimes they try to distract them by talking about something fun or focusing on an activity. But when children have these strong feelings, they need ways for their feelings to be expressed and heard—and to know that someone else understands—before they are ready to move beyond these emotions. It’s important to be patient and let your child know that you will work together to figure out what he/she wants or needs, whatever it may be.</p>
<h3>Feeling self-conscious</h3>
<p>As their bodies and their abilities change, it is common for children to feel less comfortable around others. Children, particularly teenagers, are often fearful about being seen as “different” or being treated “differently” than others. Educating a child’s peers about his/her illness, explaining that a tumor is not contagious and that it is the reason for his/her changing abilities, and helping them learn useful communication techniques can be a very good way to help them understand and relate to one another. There may be someone at your child’s hospital—such as a nurse, a child life specialist, or a social worker—who can visit your child’s classroom to talk about these things. Teachers and other school staff are often very helpful in organizing this kind of classroom experience. On the other hand, some children feel strongly that they do not want other people to know about their illness and would not be comfortable having someone speak with their classmates. Sometimes it helps to talk with your child about what he/she is afraid would happen if others found out, and you may be able to dispel these fears and facilitate the connection.</p>
<p>However, if your child does not change his/her mind, it is important to respect his/her wishes in order to avoid your child feeling embarrassed, helpless, or even vulnerable. There are so few things that a child in this situation can control that deciding what information to share with others may be one of the few things that he/she can control.</p>
<p>A few parents described their children feeling self-conscious about communication. MSN and other online chat systems, email, social networking sites, text messages, or even written letters can be great ways to help children keep in touch with their friends without having to feel so self-conscious. Also, if your child is comfortable with you teaching others how to use the specific communication strategies your family has developed, with time and practice, his/her feelings of self-consciousness may decrease.</p>
<h3>Missing familiar people and activities</h3>
<p>Familiarity provides so much comfort to children. When it’s possible to help children continue to participate in these kinds of activities, even if it means participating in a different way than they used to, it can be very helpful for them. On the other hand, some children may find that there are some things they don’t want to continue being involved in. If this is the case for your child, try to help him explain why he feels this way. It may be that he/she is self-conscious and afraid of how others might treat him/her, in which case you can talk to him/her about anything that can be done to help make the situation more comfortable or inviting. In some cases a child may feel uncomfortable or even unsafe in different environments. Whatever the situation, respecting your child’s wishes as much as possible will help him/her feel more comfortable and safe and give him/her a sense of control.</p>
<p><strong> </strong></p>
<h3>Coping with medical experiences</h3>
<p>Play is a great way to help children cope with difficult experiences. In times of stress, play may be the furthest thing from our minds, but it may also be the most valuable tool. Blowing bubbles, bringing paper and crayons to draw or play tic-tac-toe, a deck of cards, or even a list of games such as “I Spy” or “Twenty Questions” are all simple and useful distractions. For older children and teenagers, think back to what has helped them before; listening to music, playing a video game, or reading a book may be useful distraction techniques.</p>
<p>Guided imagery, deep breathing, and other relaxation techniques can also help children of all ages cope with anxiety related to medical issues. Talking with your child about what is happening, what medical procedures might feel like, and any other questions or concerns they might have will help them better manage these experiences. </p>
<h3>Knowing they will be cared for</h3>
<p>Parents highlighted that it was extremely important for their children to know that they would be well cared for. This concept included three things.</p>
<ul>
<li>Knowing that the health care team would continue to care for them. When they know that a disease or a tumor is not curable, children may think that means there will be no more medical care.</li>
<li>Knowing that they will still be looked after and that their pain and other symptoms will still be managed is very important.</li>
<li>Knowing that they are not alone and that their parents and their family will always be with them and love them “no matter what.” When children are struggling with how they’re feeling and the ways their bodies are changing, this may be the most valuable comfort you can offer them.</li>
</ul>
<h3>Children’s concern for others</h3>
<p>Another common and important concern parents told us about is children’s worries about whether their parents and their families will be okay after the child dies. Parents said it is very important to address these concerns by letting your child know two things: that the family will be sad and will miss the child after he/she dies, but at the same time, the family will be alright. Families did their best to try to ease the child’s burden of worrying about how his/her loved ones will cope. It’s important to express one’s love for the child while acknowledging the impact of his/her loss.</p>
<h3>The importance of communicating</h3>
<p>Parents told us that they often feel helpless and frustrated that they are not able to change the situation and protect their child from what is happening. Of course this feeling is natural. Sometimes in an attempt to protect a child, parents avoid talking with their child about his/her illness or letting him/her know that he/she is going to die. Although this is done with the best intentions, it does not have the impact parents hope for. Some of the unintended, possible consequences are:</p>
<ul>
<li>When children are not invited to talk about their illness, they learn from others’ example not to raise the issue themselves. Without having someone to talk to about their thoughts and worries, they are left to wonder on their own, using their imaginations to answer their own questions.</li>
<li>Children are very sensitive to the emotions of the people around them and know when others are upset. They can recognize when something is being kept from them and can only wonder what that might be, often imagining the worst.</li>
<li>Children are more aware than anyone of the changes occurring in their own bodies. Although they may not know what will happen in the future, they have learned that unpredictable changes can continue to occur. If they do not feel able to talk about their illness or the future, they are left to face these questions and fears on their own. </li>
</ul>
<p>With these things in mind, it is clear that protecting a child from talking about his/her illness does not protect him/her from the difficult experience he/she is already living. Instead of letting this fact make you feel helpless, try to see that it actually offers you an important opportunity. You are not helpless. Even though no one can change what is happening, there is a great deal that you can do to help your child through this experience. As we’ve discussed in this section, there are some very important messages that will offer your child comfort, reassurance, and security. Make sure your child knows the following.</p>
<ul>
<li>Your child is not alone. You will be there to support him/her throughout this experience.</li>
<li>Your child can trust you. You can truthfully prepare him/her for things such as medical procedures and other events so he/she feels less anxious and surprised by these things. Your child’s health care team at the hospital can help you figure out how to do this.</li>
<li>Your child will be well cared for. You can reassure your child that you, your family, and your child’s health care team will all be working to make sure that he/she has what he/she needs to feel comfortable and taken care of.</li>
<li>Your child will always be part of your family. You can talk about all of the things you will remember and all of the ways that your child will continue to have an important place in your family.</li>
<li>Your family and people who know and love your child will be incredibly sad when he/she dies, but your family members and friends will support one another through their grief.</li>
</ul>
<p>Although these things cannot change what is happening to your child, they can make him/her feel supported in the knowledge that he/she will not be alone. Nothing can take away the pain that your child and your family will struggle with, but these important messages can offer your child support and strength as you face what is happening, together.</p>
<h3>Supporting siblings</h3>
<p>As a parent, you may not only be supporting a child who has a DIPG but also his or her siblings. There are some issues that are common for children who have a sibling living with a serious illness, and these can vary depending on the age of the children. For example, many children in this situation have questions about why this happened, worries about their own and/or their sibling’s health, and concerns about their parents’ emotional struggles. It is also very common for children to wonder if they are somehow to blame for a sibling’s illness and to worry that they may also “catch” the illness. Even if a child has not expressed these worries, it is helpful to say something like, “I just want to make sure you know that there is nothing you could have done to make this happen and that this is not the kind of illness you can catch from someone else.”</p>
<p>Many of the parents we spoke with shared their suggestions about how to help brothers and sisters.</p>
<ul>
<li>Make sure the siblings are able to continue spending time together at home or in the hospital.</li>
<li>Help all of your children learn how to use the new communication strategies, as it can help children continue to interact with each other and maintain their relationships.</li>
<li>Encourage siblings to say “hello” and “goodbye” to their sibling when they come home and when they go out.</li>
<li>Encourage interactions that help a sick child continue to feel recognized and included in the family’s day-to-day activities despite their changing abilities.</li>
</ul>
<p>Brothers and sisters may be reluctant or nervous about learning new communication strategies, and may be afraid of doing it “wrong” or looking silly if they do. Just like teaching communication strategies to a child who is sick, it can also help to use games to teach these strategies to their siblings, and to practice with them until they feel more comfortable using them. They may also need your help to understand why their brother or sister isn’t able to talk the way they used to. Because they may not be able to see any physical evidence of something stopping their sibling from being able to speak, some children wonder why their brother or sister just doesn’t try harder. It helps to explain that our brains are like computers that send signals or instructions to all of the other parts of our body to make it work, including our arms, legs, stomach, heart, lungs, eyes, ears, mouth, etc. When a person has a brain tumor, it interferes with, or “mixes up,” some signals so that things don’t always work the way they’re supposed to. This is why some children who have brain tumors aren’t able to speak the way they used to.</p>
<p>Similarly, children may not know how to interact or play with their brother or sister since their abilities have changed. They may also believe that their sibling doesn’t want to play with them anymore. Again, it is important to explain that these changes are caused by the tumor rather than being the child’s choice. Then you can help your children find new ways of playing or being together. Healthy siblings can read stories to their brother or sister, watch movies or listen to music together. They can also play “for” their sibling; some examples of this are making a beaded bracelet or building a LEGO tower by asking their sibling what color bead or LEGO block to use next. They can also draw a picture or write a story based on their sibling’s ideas about what to draw or write. When thinking about how to help children play together, consider what they used to do together and try to find ways to adapt those activities. Children may have a hard time trying new things; it can be easier and more comfortable to do what feels familiar.</p>
<p>Some other considerations we’ve learned about siblings are:</p>
<ul>
<li>Healthy siblings need opportunities to play for themselves.</li>
<li>They will need your assistance to find a balance between feeling helpful without taking on too much responsibility for their sibling with a brain tumor.</li>
<li>Even when they understand why their brother or sister needs the extra attention, siblings need support to make sense of, and express, their emotions and possible feelings of jealousy about the extra attention their ill sibling is getting.</li>
<li>Sometimes siblings are asked to be patient, helpful, and understanding for a long time, which isn’t easy. This is a challenging experience for children of all ages, and their frustrations can be expressed differently at different developmental stages.</li>
<li>All children need to know that their needs will be met.</li>
<li>Children of all ages need love and support from their parents, though how they express this need changes at different ages.</li>
<li>It is important to recognize and tell each child how much you appreciate all that he or she has done throughout their sibling’s illness, including specific examples when possible.</li>
<li>Let them know that you recognize how challenging it has been and will continue to be and encourage them to let you know when they’re struggling and need help.</li>
</ul>
<p>Talking with your other children about how they are feeling, helping them to understand that all of their emotions are natural, and encouraging them to express any questions or fears that they have is very important and beneficial. There may be people at the hospital or at school, such as child life specialists, social workers, counselors, or volunteers who can help support children when their sibling is ill. There may also be local organizations that can provide support.</p>
<h2>Parents’ Advice for Other Parents</h2>
<p>The parents we spoke with shared some very personal insights into their experiences that may be helpful advice for others parents. Some of these are reflections or quotes about a parent’s outlook or important things that they tried to keep in mind while going through this same process with their child. </p>
<h3>About relating to children</h3>
<ul>
<li>Know your child, their personality, interests, coping styles, and preferences for support.</li>
<li>Have important conversations sooner rather than later. Have important conversations about topics such as illness, life, death, your love for them, and spirituality as early as possible. Although these can be emotionally difficult conversations to have, they get even more difficult once children have a harder time communicating.</li>
<li>Keep communicating. When a child can no longer express themselves to others, it can be hard to know whether or not to continue to talk to them. Communicating through story-telling and touch (including a hug, gently squeezing or rubbing a child’s arm) can convey love, warmth, affection, and provide great comfort to a child.</li>
</ul>
<h3>About relating to one another as parents and as a family</h3>
<ul>
<li>Try to work together—as a couple, as parents, and as a family.</li>
</ul>
<h3>Asking questions and asking for help</h3>
<ul>
<li>Whatever you want to know, ask. If there is anything you have wondered or worried about, do not hesitate to ask a member of your child’s health care team.</li>
<li>Whatever you need, ask. Different services will be available depending on the hospital or the community where you live. Ask a member of your child’s health care team to help you find resources near you.</li>
</ul> https://dipg.org/blog/communication-when-a-dipg-child-can-no-longer-speak/ Wed, 01 Apr 2020 13:17:06 -0500 https://dipg.org/8930