We have gathered resources and support to help you navigate the medical space and decode medical terminology, know what questions to ask your medical team or research, routine bloodwork markers, tracking tools and what they mean, and accessing your circle of support.
Your Hospitals Resources
Many hospitals offer Patient and Family Advisory Council (PFAC)or Patient Action Networks (PAN) inquiring about this resource at your instituion may be helpful.
Nutritional considerations-Should I get a G Tube or NG Tube prior to treatment?
Can/should I get a second opinion?
What is the best delivery method for treatment/chemotherapy-Port, Pic Line?
What are my Fertility preservation options?
Any medicines available to lessen side effects? Nausea, Hearing Loss?
Should I consider a Neuropsychology evaluation?
Are there clinical trials I should look into?
How do I participate in daily rounds with the medical team?
What and when side effects alter treatment plans?
How do I know treatment is working?
MRI schedule?
How to get ready for MRI’s?
What are complimentary options avaialable during treatment?
When are clinicial trails right for me?
What other part of my body will be affected by treatment?
What does followup care look like?
What other type of appointments do I need?
What are long term side effects?
Do you offer a school liasion to assist with school support?
How & when do I transistion to my general practitioner?
Is there a survivorship clinic? Does my medical team change with this?
“When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.'”
– Mr Rogers
Not all support listed is specific to 
dulloblastoma
dulloblastoma Community Support
There are many non profits that assist with housing and financial support; here are some that we have found that may be able to help.
During or post treatment there are many services that allow the patient and/or family to participate in that will offer support along with enjoyment. Most of these listings below are centered around life threatening disease and…..
Originally by Susan Silk and Barry Goldman
Ring 1: The Cancer Patient. The patient is at the center and does not need to give support to anyone. Their only job is to receive support.
Ring 2: Parent/Immediate Caregivers. The next closest ring to the patient is reserved for people who are closest to the patient. They are there to support the cancer patient
Ring 3, 4, 5: Everyone Else Who Knows the Patient. The people in these rings give support to anyone in rings closer to the patient. (Communicator, Doer, Mental support)
Ring 6: The Lookie-Loos. The very outer circle is the Lookie-Loos. This encompasses anyone with no emotional attachment to the patient.
So what does offering support look like? Here are some examples of things you can do to support people in the inner rings:
● Just sit and listen – let them vent!
● Offer to do errands for them (groceries, dry cleaning, gardening, shovelling snow)
● Bring over food or meals
● Offer to take the dog out for a walk or take their kids for an outing
● Make sure you’re taking care of your own emotional needs so you don’t experience caregiver burnout.
Basically, anything that will ease their daily life is a form of support. Just be sure that they actually need it, or else your gesture goes back to being about you and not them.
Sometimes we can be very willing to give support yet hesitant to accept it – it might feel like a sign of weakness or lack of independence. But the opposite is true: accepting support is a sign of strength and can be vital to recovery. Here are some tips for learning to accept support from others.
● Say “yes” when someone offers to do a task or errand for you, if it feels useful.
● Be clear about what would be helpful. Would another casserole in the freezer be one too many? Then say that you don’t need anymore – and instead suggest what would be helpful, like walking the dog or babysitting.
● It’s okay to tell someone that you just want to talk and vent (and not necessarily receive advice in return).
● Be choosy about who you talk and vent to. Not everyone has the capacity to listen in a helpful, compassionate way.
● Seek professional support. If no one in your life can give you the help you need, consider hiring people if you can: cleaners, gardeners, caregivers, counsellors, and so on.
● Check out support groups – there are many support networks for people with cancer and their loved ones. Many of them are online, so you can stay at home and still feel connected
At a specified time during your treatment or post treatment your focus will shift a bit to reintegration into a educational setting; remote/virtual or in the classroom. This is a scary time and this may help assist in this process by providing some sample letters to send to the school and classmates. Details and help with navigating the steps to getting what your child needs : Neuro Psych Evaluations, School Evaluations Individual Education Plans/504c, etc.
Evaluation prior to the start of treatment provides a baseline against which later functioning can be compared. Assessment during and after adjuvant therapy identifies the effects of treatment, and assists in the developing Education plans. The evaluation includes;an educational component and cognitive abilities, brain-behavior relationships, social skills and personality functioning.
The comprehensive nature of such an evaluation enables more accurate diagnosis, determining areas of strength and weakness, and the need for academic, psychological and neurological interventions. This report should be shared with your child’s school to determine the necessity for support and create an accurate IEP and/or a 504b.. Your school may request further in-house testing to best understand how to support your child. Check your hospital resources to see if a school liaison is available to assist.
Bloodwork is collected on a routine basis to help determine
| Blood Marker | Normal Range | What is it? | Fluctuation Cause | Side effects | Intervention |
|---|---|---|---|---|---|
| White blood cell count (WBC) | 5.69-9.8 | White blood cells are part of the immune system. They help your body fight off infections and other diseases. | Chemotherapy decreases WBC | Sore throat Diarrhea Chills Rash Burning or pain with urination Drainage from the ear Fever (temperature of 100.5° under the arm or 101°F by mouth or higher) Cough that does not go away Stiff neck Any areas of redness, warmth, or pain Drainage from central venous catheter site | antibiotics, infection prevention |
| Lymphotcytes | 1.23-2.69 | Lymphocytes create antibodies to fight against viruses and bacteria. | Chemotherapy increase Lymphotcytes responding to acute infection or inflammation | Infections | electrolyte management, medications, infection control |
| neurophils (ANC) | 2.77-6.34 | Neutrophils are your body’s first line of defense. They are the most numerous type of white blood cells. They kill bacteria and fungi. | Neutrophil counts generally start to drop about a week after each round of chemotherapy begins.
Neutrophil levels reach a low point about 7 to 14 days after treatment. This is called the nadir. At this point, you are most likely to develop an infection. | A fever 100.5°F (38°C) or higher
Chills or sweating Sore throat, sores in the mouth, or a toothache Abdominal pain | prevention and reduction of risk of infection (isolation), medication to stimluate production of WBC, delay chemo. |
| monocytes | Less than .85 | Monocytes are a type of white blood cell. They are produced in the bone marrow and then enter the bloodstream. They fight certain infections and help other white blood cells remove dead or damaged cells and fight cancer cells. | |||
| eosinophils | .05-.22 | Eosinophils help with your body’s allergic response and kill cancer cells and parasites. | |||
| Red Blood Cell Count (RBC) | 3.85-4.75 | Red blood cells are produced by the bone marrow continuously in healthy children and adults. These cells contain hemoglobin | Chemotherapy can damages bone marrow therefore decreasing RBC | Rapid or irregular heart beat
Occasional chest pain Trouble breathing or shortness of breath Dizziness or fainting | Iron therapy Red blood cell transfusion, Erythropoiesis-stimulating agents (ESAs) |
| Hemoglobin | 11-13.3 | Hemoglobin is a substance in red blood cells that makes it possible for blood to transport (carry) oxygen throughout the body. | Chemotherapy can damages bone marrow therefore decreasing RBC | Paleness Listlessness (feeling “lazy”, no energy) Dizziness Irritability Weakness Tendency to feel cold Tiredness Shortness of breath | packed red blood cell transfusion |
| Platlet Count | 198-371 | Platelets, or thrombocytes, are small, colorless cell fragments in our blood that form clots and stop or prevent bleeding. Platelets are made in our bone marrow, the sponge-like tissue inside our bones. Bone marrow contains stem cells that develop into red blood cells, white blood cells, and platelets. | A low platelet count from chemotherapy is usually temporary. It is rare that chemotherapy permanently damages bone marrow cells. | Bruises Petechiae (pe TEE key i) (purple freckles under the skin) Nosebleeds Oozing blood from the mouth or gums Pink or red urine “Coffee ground” vomit Severe headache Bright red or black bowel movements Trouble waking up | platelet transfusion |
| Sodium | 135-148 | Sodium is both an electrolyte and mineral. It helps keep the water (the amount of fluid inside and outside the body’s cells) and electrolyte balance of the body. Sodium is also important in how nerves and muscles work. | platnum based chemotherapy agents (Aminoglutethimide, Cyclophosphamide and Vincristine). decrease sodium in body, creating electrolyte imbalance. | Slightly disoriented. Confusion | fluid replacement |
| Potassium | 3.2-4.5 | Potassium is a mineral that your body needs to work properly. It is a type of electrolyte. It helps your nerves to function and muscles to contract. It helps your heartbeat stay regular. | loss of body fluids due to excessive vomiting, diarrhea, or sweating, due to endocrine or hormone problems from chemotherapy and/or radiation | You may not have any symptoms unless your blood potassium levels are significantly lowered. You may have muscle weakness, fatigue, or cramps. On exam, your healthcare provider may notice your reflexes to be lessened. You may have changes on your electrocardiogram (ECG or EKG). | fluid replacement |
| Magnesium | 1.5-2.2 | Magnesium plays many crucial roles in the body, such as supporting muscle and nerve function and energy production. | Cisplatin causes a decrease in magnesium or thyroid disfunction can cause decrease | Low magnesium levels usually don’t cause symptoms. however you may have rapid heart beat, nausea, diarrhea | fluide replacement, or supplementation |
| Blood Urea Nitrogen (BUN) | 5-18 | A BUN, or blood urea nitrogen test, can provide important information about your kidney function. The main job of your kidneys is to remove waste and extra fluid from your body. | Chemotherapy drugs such as: Cisplatin, Carboplatin, Carmustine, Mitomycin, high-dose Methotrexate cause BUN to increase, very high protein in diet | Decrease in amount of urine or frequency Pain or urgency with urination Dark urine Blood in your urine Fatigue Muscle weakness Swelling in your feet or ankles Nausea or vomiting Confusion, seizure | Extra fluids, amifostine (Ethyol),s given prior to chemo,.lowering or stopping chemo, dialysis |
| Aspartate Aminotransferase (AST) | 2-40 | AST (aspartate aminotransferase) is an enzyme that is found mostly in the liver, but also in muscles. When your liver is damaged, it releases AST into your bloodstream. An AST blood test measures the amount of AST in your blood. The test can help your health care provider diagnose liver damage | Chemotherapy can decrease liver function and increase AST levels | overly tired, or very weak (fatigued) | diuretics, CT imaging |
| Alanine aminotransferase (ALT) | 3-30 | ALT is an enzyme found in the liver that helps convert proteins into energy for the liver cells. When the liver is damaged, ALT is released into the bloodstream and levels increase. Aspartate transaminase (AST). AST is an enzyme that helps metabolize amino acids. | Chemotherapy can decrease liver function and increase ALT levels | overly tired, or very weak (fatigued) | diuretics, CT imaging |
| Albumin | 3-4.6 | is the most prevalent protein in the blood. It is synthesized in the liver and removed from circulation by the kidney, which causes it to be excreted in the urine. Albumin is often measured in order to detect liver damage or kidney damage, either of which may be a side effect of cancer or cancer treatment. | chemotherapy can decrease kidney function and decrease albumin levels | swelling, muscle weakness, poor appetite | diet modificatin, medications |
| Alkaline phosphatase | 100-300 | is an enzyme is that involved in bone growth. It is processed in the liver and excreted into the digestive tract in the bile. | chemotherapy or metasis, infection can cause increase | overly tired, abdominal pain | diuretics, CT imaging |
| Calcium | 8-10.5 | is a chemical that is necessary for muscle contraction, nerve function, blood clotting, cell division, healthy bones and teeth. | An increased level of calcium in the bloodstream is a possible complication of cancer | Loss of appetite
Nausea and vomiting Constipation and abdominal (belly) pain The need to drink more fluids and urinate more Tiredness, weakness, or muscle pain Confusion, disorientation, and difficulty thinking Headaches Depression | fluids, medication |
| Chloride | 99-111 | is a chemical that helps maintain fluid balance in the body. | Chemotherapy | Low chloride levels may be caused by vomiting or diarrhea. | fluids |
| Glucose | 61-199 | is the simplest form of sugar that the body uses for energy. The body requires insulin to move sugar from the bloodstream into the cells for energy production. | radiation, chemotherapy and steriods | dehydration | medication |
| Vit D | 30-80 | vitamin D promotes an overall increase in the strength of the immune system and has the properties of both a hormone and a vitamin and is necessary for mineral homeostasis and proper formation of bone | chemotherapy decreases vit d levels | Fatigue. Bone pain. Muscle weakness, muscle aches, or muscle cramps. Mood changes, like depression. | sunlight, Consume foods high in vit d (fish, mushrooms, egg yolks), supplementation |
On a good day, dealing with cancer is complicated. On a bad day, it can feel impossible. For every day, we’re here to help. Organize your schedule, needs, and support—all in one place.
Routine blood tests measures the number of different types of cells in a person’s blood to determine the course of a patient’s disease, select the right treatment dosage, and monitor side effects. This simple bloodwork tracker can help define patterns and give you a more detail understanding of your body’s response to treatment.
Routine blood tests measures the number of different types of cells in a person’s blood to determine the course of a patient’s disease, select the right treatment dosage, and monitor side effects. This simple bloodwork tracker can help define patterns and give you a more detail understanding of your body’s response to treatment.
Accelerating research and science –
donating tumor samples
If your child has been diagnosed with a brain tumor and is currently being treated at one of our institutions, he or she may be eligible to make a donation to the CBTN. Please ask your child’s doctor for more information. Your child’s physician can describe the donation process, obtain your consent to donate samples, and answer any additional questions.
If your child is not currently being treated at one of the CBTN member institutions, they may still be able to contribute a sample to the CBTN. To request an out-of-network donation, please contact a member of our research team via email (research@cbtn.org) and we will follow up to clarify any questions and coordinate the donation.
We extend our heartfelt gratitude to the many generous and committed donor constituents who have supported the CBTN initiative. Together we are making pioneering progress in pediatric brain tumor research.
There are hundreds of childhood cancer foundations all with a common goal; to ease the burden this awful disease has presented to too many children.
Our hope at cureMEdullo is to partner with foundations to amplify our voice for the community and get us closer to a cure!
