Champions for Hope

Saturday, November 17, 2012 at Severance Hall
~Open Bar, Dinner, Auctions, Music~
Sponsored By:  Parker Hannifin
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Through working with                                    at RB&C, we have come to the conclusion that the best way for us to help right now is by raising money for the new bone marrow transplant rooms that will be constructed during an upcoming renovation in 2013.  These rooms cost approximately $50,000 each!

RB&C is increasing in the number of bone marrow transplants that it is doing each year doing almost 30 in 2011.  The BMT procedure can be where patients with a number life-threatening diseases, such as Leukemia or Sickle Cell Disease, may find their new lease on life. These special patients NEED these rooms due to the multitude of requirements they have simply for survival.   In the video below you will hear Dr. Ken Cooke, one of the doctors on Erin's team and the head of the bone marrow transplant division at RB&C, discuss what BMTs do.

Why raise money for bone marrow transplant rooms?

  • LONG stays in the hospital - These patients need rooms where they and their families can live as comfortably as they can during this grueling time.  From February 10, 2011 to July 30, 2011, Erin was only home for a few short weeks total.  The rest of the time we were living at RB&C.  After the cold and flu season ended, we were able to bring in the baby and sometimes our oldest daughter, Annie, as well.  That makes 5 of us living in the room at one time.  
  • STERILE and FILTERED rooms for the dangerously weak immune system - These patients have virtually no immune system during this time.  They need such extensive supportive care and the rooms are a major part of that care.  Erin was hooked up to so many different machines that had to monitor various functions of her body at all times.
  • RB&C is doing more and more bone marrow transplants each year - UH RB&C's Blood and Marrow Transplant Program is the only FACT-accredited pediatric program in Northeast Ohio.  We want families faced with the path of the bone marrow transplant to know RB&C is the best place for them to go.

​                                                                                                                  Click on the button to be linked to UH's website!

The information below is from about the bone marrow transplant procedure that our Erin and so many others have gone through. 

What is a bone marrow transplantation?

Bone marrow transplantation (BMT) is a special therapy for patients with certain cancers. A bone marrow transplant involves taking cells that are normally found in the bone marrow (stem cells), filtering those cells, and giving them back either to the patient or to another person. The goal of BMT is to transfuse healthy bone marrow cells into a person after their own unhealthy bone marrow has been eliminated.

What is bone marrow?

The bone marrow is a soft, spongy tissue found inside the bones. The bone marrow in the hips, breast bone, spine, ribs, and skull contain cells that produce the body's blood cells. The bone marrow is responsible for the development and storage of most of the body's blood cells. The three main types of blood cells produced in the bone marrow include:

            •red blood cells (erythrocytes) - carry oxygen to the tissues in the body.       
            •white blood cells (leukocytes) - help fight infections and to aid in the immune system.
            •platelets - help with blood clotting.

Each of these cells carries a life-maintaining function. The bone marrow is a vital part of the human body.

What are stem cells?

Every type of blood cell in the bone marrow begins as a stem cell. Stem cells are immature cells that are able to produce other blood cells that mature and function as needed.

Stem cells are the most important cells needed in a bone marrow transplant. Stem cells, when transplanted, find their way to the recipient's marrow and begin to differentiate and produce all types of blood cells that are needed by the body.

Why is a bone marrow transplant needed?

The goal of a bone marrow transplant is to cure many diseases and types of cancer. When a child's bone marrow has been damaged or destroyed due to a disease or intense treatments of radiation or chemotherapy for cancer, a marrow transplant may be needed.

Some of the diseases that have been treated with bone marrow transplant include the following:

            •some solid tumors (i.e., neuroblastoma, rhabdomyosarcoma, brain tumors)
            •aplastic anemia
            •immune deficiencies (severe combined immunodeficiency disorder, Wiskott-Aldrich syndrome)
            •sickle cell disease
            •Blackfan-Diamond anemia
            •metabolic/storage diseases (i.e., Hurler's syndrome, adrenoleukodystrophy disorder)
            •cancer of the kidneys

What are the different types of bone marrow transplants?

There are different types of bone marrow transplants depending on who the donor is. The different types of bone marrow transplant include the following:

           •autologous bone marrow transplant 
                 The donor is the child him/herself. Stem cells are taken from the child either by bone marrow harvest or apheresis (a process of 
                 collecting peripheral blood stem cells) and then given back to the child after intensive treatment. Often the term "rescue" is used instead 
                 of "transplant."

           •allogeneic bone marrow transplant
                 The donor shares the same genetic type as the child. Stem cells are taken either by bone marrow harvest or apheresis from a genetically-
                 matched donor, usually a brother or sister. Other donors for allogeneic bone marrow transplants may include: 

                             ◦a parent - a haploid-identical match is when the donor is a parent and the genetic match is at least half identical to the recipient. 
                              Unfortunately, parents may not be a good enough match to be donors in many cases.

                             ◦unrelated bone marrow transplants (UBMT or MUD for matched unrelated donor) - the genetically matched marrow or stem cells 
                              are from an unrelated donor. Unrelated donors are found through the national bone marrow registries.

            •umbilical cord blood transplant - stem cells are taken from an umbilical cord immediately after delivery of an infant. These 
                   stem cells reproduce into mature, functioning blood cells quicker and more effectively than do stem cells taken from the bone 
                   marrow of another child or adult. The stem cells are tested, typed, counted, and frozen until they are needed for a transplant. 
                   Because the stem cells are "new," they are able to produce more blood cells from each stem cell. Another advantage cord blood 
                   has is that the T-lymphocytes (part of the immune system that causes graft-versus-host disease) are not completely functional 
                   this early in the stage of life. Recipients of cord blood transplants have a decreased risk for severe graft-versus-host disease.

The bone marrow transplant procedure:

The preparations for a bone marrow transplant vary depending on the type of transplant, the disease requiring transplant, and your child's tolerance for certain medications. 

                  •Most often, high doses of chemotherapy and/or radiation are included in the preparations. This intense therapy is required to effectively 
                   treat the malignancy and make room in the bone marrow for the new cells to grow. This therapy is often called ablative, or  
                   myeloablative, because of the effect on the bone marrow. The bone marrow produces most of the blood cells in our body. 
                   Ablative therapy prevents this process of cell production and the marrow becomes empty. An empty marrow is needed to make room for 
                   the new stem cells to grow and establish a new production system.

                  •After the chemotherapy and/or radiation is administered, the marrow transplant, either from bone marrow, cord, or from peripherally 
                   collected stem cells, is given through the central venous catheter into the bloodstream. It is not a surgical procedure to place the 
                   marrow into the bone, but is similar to receiving a blood transfusion. The stem cells find their way into the bone marrow and begin 
                   reproducing and establishing new, healthy blood cells.

                 •Supportive care is given to prevent and treat infections, side effects of treatments, and complications. This includes frequent blood tests, 
                  close monitoring of vital signs, strict measurement of input and output, weighing your child daily (or twice daily), and providing a 
                  protected and sterile environment.

During infusion of bone marrow, your child may experience any, or all, of the following symptoms:

            •chest pain

After infusion, your child may:

           •spend several weeks in the hospital.
           •be very susceptible to infection.
           •experience excessive bleeding.
           •have blood transfusions.
           •be confined to a sterile environment.
           •take multiple antibiotics and other medications.
           •be given medication to prevent graft-versus-host disease (if the transplant was allogeneic). The transplanted new cells (the graft) tend to 
            attack the child's tissues (the host), even if the donor is a relative, such as a brother, sister, or parent.
           •undergo continual laboratory testing.
           •experience nausea, vomiting, diarrhea, mouth sores, and extreme weakness.
           •experience temporary emotional or psychological distress.

Your child's physical and mental health are important in the success of a transplant. Every measure is taken to minimize complications and promote a healthy, happy, safe environment for your child.

When does engraftment occur?

Engraftment of the stem cells occurs when the donated cells make their way to the marrow and begin reproducing new blood cells. Depending on the type of transplant and the disease being treated, engraftment usually occurs around day +15 or +30. Blood counts will be performed frequently during the days following transplant to evaluate initiation and progress of engraftment. Platelets are generally the last blood cell to recover.

Engraftment can be delayed because of infection, medications, low donated stem cell count, or graft failure. Although the new bone marrow may begin making cells in the first 30 days following transplant, it may take months, even years, for the entire immune system to fully recover.

What complications and side effects may occur following BMT?

The following are complications that may occur with a bone marrow transplantation. However, each child may experience symptoms differently. Complications may vary depending on the following:

            •type of marrow transplant
            •type of disease requiring transplant
            •preparative regimen
            •age and overall health of the recipient
            •variance of tissue matching between donor and recipient
            •presence of severe complications

Possible complications may include, but are not limited to, the following. These complications may also occur alone, or in combination:

            •infections - Infections are likely in the child with severe bone marrow suppression. Bacterial infections are the most common. Viral and 
             fungal infections can be life threatening. Any infection can cause an extended hospital stay, prevent or delay engraftment, and/or cause 
             permanent organ damage. Antibiotics, anti-fungal medications, and anti-viral medications are often given to prevent serious infection in the 
             immuno-suppressed child.

Preventative measures for common sources of infection are also a part of transplant. This may include any or all of the following: 
            ◦special air filtered rooms
            ◦diet restrictions
            ◦isolation requirements
            ◦restriction of visitors
            ◦strict hygiene regimen
            ◦frequent linen changes

Blood tests are performed to prevent, detect, and treat infections. Often, multiple antibiotics are started if an infection is suspected.

           •low platelets and low red blood cells - Thrombocytopenia (low platelets) and anemia (low red blood cells), as a result of a non-functioning 
            bone marrow, can be dangerous and even life threatening. Most children will require multiple blood product transfusions. Low platelets can 
            cause dangerous bleeding in the lungs, gastrointestinal (GI) tract, and brain. 

           •pain - Pain related to mouth sores and gastrointestinal (GI) irritation is common. High doses of chemotherapy and radiation can cause 
            severe mucositis (inflammation of the mouth and GI tract). Without the normal immune system functioning, your child is unable to heal these 
            irritations quickly. Often, pain medication is required. Mouth care is needed to prevent infection and injury when mucositis is expected. 
            Diarrhea, nausea, and vomiting may occur with chemotherapy, radiation, and/or GI irritation. Calories and proteins may be given through an 
            intravenous (IV) line until your child is able to eat again and the diarrhea has resolved.

           •fluid overload - Fluid overload is a complication that can lead to pneumonia, liver damage, and high blood pressure. The primary reason for 
            fluid overload is because the kidneys cannot keep up with the large amount of fluid being given in the form of medications, intravenous (IV) 
            and nutrition, and blood products. The kidneys may also be damaged from disease, infection, chemotherapy, radiation, or antibiotics.

During transplant and recovery, your child will be assessed for signs and symptoms of fluid overload. He/she may be weighed at least daily, often twice or three times daily, and blood chemistries and input and output will be measured frequently. Medications that help kidney function and elimination of excess fluid may be given.

          •respiratory distress - Respiratory status is an important function that may be compromised during transplant. Infection, inflammation of the 
           airway, fluid overload, graft-versus-host disease, and bleeding are all potential life-threatening complications that may occur in the lungs and 
           pulmonary system.

          •organ damage - The liver and heart are important organs that may be damaged during the transplantation process. Temporary or 
           permanent damage to the liver and heart may be caused by infection, graft-versus-host disease, high doses of chemotherapy and radiation, 
           or fluid overload.

          •graft failure - Failure of the graft (transplant) taking hold in the marrow is a potential complication. Graft failure may occur as a result of 
            infection, recurrent disease, or if the stem cell count of the donated marrow was insufficient to cause engraftment.

Graft failure may be treated with an additional marrow transplant if a source is available.

          •graft-versus-host disease - Graft-versus-host disease (GVHD) can be a serious and life-threatening complication of a bone marrow 
            transplant. GVHD occurs when the donor's immune system reacts against the recipient's tissue. The new cells do not recognize the tissues 
            and organs of the recipient's body. The most common sites for GVHD are GI tract, liver, skin, and lungs.

When will my child be discharged?

When your child is discharged following a bone marrow transplant depends on many factors, including the following:

         •extent of engraftment
         •presence of complications
         •your child's overall health
         •distance from the facility (this may be specified by your child's team of physicians. Occasionally, a bone marrow transplant patient will be 
          required to stay within a certain distance or travel time from the facility to ensure safety if complications arise.

Frequent visits to your child's transplant team will be required after discharge to determine effectiveness of treatment, detect complications, detect recurrent disease, and to manage the late effects associated with a bone marrow transplant. The frequency and duration of visits will be determined by your child's transplant team.

The Need & Cause ~  The Harsh Realities of Childhood Cancer and 
                                                                            the Hope Found at Rainbow Babies & Children's Hospital
1 in 300 children will develop cancer prior to the age of 20. 

Every day around 35 children are diagnosed with cancer. 

Every year around 7 of those 35 children will die from their cancer. 

Cancer is the leading disease-related cause of death in children. 

Only accidents are responsible for causing more deaths in children than cancer. 

Cancer does not discriminate among gender, race, or socioeconomic class.

Cancer does not discriminate among state, county or classroom. 

This video to the right shows some of the TRUE pain of cancer and a bone marrow transplant.  It also shows how the Potters could still smile through the heartache.  Cancer in kids is real.  It is out there.  It may be closer than you think.

Families live through cancer.  They still try to stay together if they can.  They try to make things as "normal" as they can.  The beautiful people at Rainbow Babies & Children's Hospital helped the Potters do this for their family.