Preparing for Your Stay in the Stem Cell Transplant Unit
The Stem Cell Transplant Unit at Cardinal Glennon Children's Medical Center is a four-bed unit located on the north end of the fourth floor. One of the first things people notice when entering the unit is that all doors are kept closed at all times. This is done because a special air system has been installed in each room to keep the air as clean and germ-free as possible.
The guidelines discussed here are designed to make this special unit comfortable for patients and their families and to reduce your child’s risk of acquiring an infection during his or her hospitalization:
Clothing and Belongings
The unit is bright and colorful, but special items can make patients’ rooms more like home. Only a limited number of special items should be brought from home. Blankets and stuffed animals should be laundered in warm/hot water with a little bleach, dried in a dryer, placed in a clean plastic bag, and then brought to the hospital. Flowers, plants, and fresh fruits are not allowed in the patient’s room. If you are unsure of the suitability of any particular item, you should ask your child’s nurse.
Parents who are staying with their child can wear clean street clothes. Parents may bring personal items such as toiletries, changes of clothes, etc. While there is space available in drawers under the daybeds in the room, please keep in mind that the space is limited. Other visitors and hospital staff will cover their clothes with the yellow gowns prior to entering patient rooms.
Hand washing is the single most important way to prevent the spread of infection. Before entering your child’s room, everyone will complete a two-minute hand scrub at the scrub sink. If you leave the unit for any reason, please repeat the scrubbing procedure before going back into your child’s room. If you are not sure, wash your hands.
No food will be stored in your child’s room. If you wish to keep some items for yourself or for your child, we do have a refrigerator and cabinet space available. A microwave oven is also available for your use. Remember to label food items clearly with a name and a date. If the items are for your child, follow the dietary guidelines given upon admission.
Admission to the Unit
There are many things that need to be accomplished on admission day. Getting settled in your room is hectic enough, but the nurses and several doctors will be asking you and your child questions, as well as giving your child a full physical examination.
Another important job to be completed shortly after your child’s admission is to set up a daily schedule. The nurse will sit down with you and your child to review the daily routine. Some items are fun and others not so much fun, but all are important. A normal schedule includes items such as TV time, games, physical therapy, bath, mouth care, medications, and Child Life visits. Once the best time for these activities has been determined, a schedule will be posted in your child’s room. It is important for everyone (your child, nurses and other staff) to know your child’s preferred times for certain activities.
Preparative or Conditioning Regimen
The conditioning or preparative regimen is a combination of chemotherapy drugs, immunosuppressive medication, and possibly radiation used to prepare the body to accept new stem cells. There are three main goals of this regimen: (1) to make room for the new cells, (2) to eliminate any remaining cancer cells, and (3) to destroy the immune system to prevent it from rejecting the donor stem cells.
The conditioning regimen is tailored to each patient depending on his/her disease and the type of transplant. You will be given a separate page that will outline the schedule of your child’s conditioning regimen.
Chemotherapy is a group of special medications which are used to destroy cancer cells. There are several different types of chemotherapy medications, and each affects cancer cells differently. Some of the medications will directly kill cells, while others change the cell and make it inactive or unable to grow. However, chemotherapy is not selective. In addition to its intended affects on cancer cells, chemotherapy also kills or damages normal cells. These unintended effects of chemotherapy are referred to as side effects. Healthy cells most susceptible to the effects of chemotherapy are the ones in your child’s mouth, stomach, intestines or bowels, and hair. The most common side effects are nausea, vomiting, and diarrhea, some of which can be controlled with medications. Hair loss is one side effect that we cannot control, but be reassured your child’s hair will grow back two to three months after chemotherapy.
Radiation therapy used as part of the conditioning regimen is different from the focused radiation therapy that is used in the treatment of cancer. As a part of the conditioning regimen, radiation is delivered to the whole body. This process is referred to as total body irradiation (TBI). TBI can be given in a single treatment or, more commonly, as repeated treatments over several days. Cardinal Glennon does not have the necessary equipment needed to perform TBI. If TBI is required as part of your child’s preparative regimen, he/she will be transported across the street to Saint Louis University Hospital.
You will visit the radiation department prior to admission so that the radiation equipment can be carefully calibrated to your child. Hospital staff will transport your child to the radiation department with a mask and a cover sheet to limit their exposures to infections during the trip. Parents may go with their child to the treatments, but for the actual treatment, your child will need to be alone in the room.
To make communication between parent and child possible, a TV camera and an intercom system have been installed in the room. They also have a small TV with a VCR in the room, so you may want to bring a video or choose one from the collection at the Radiation Center.
It is very important that your child remains very still during the treatment, so videos or tapes may be helpful. It is sometimes difficult for younger patients to remain still for the necessary length of time. In these situations, medications will be used to help your child relax and lie quietly. The treatment is not painful, but it may be noisy. Midway through the treatment, your child will be repositioned to ensure that all body surfaces are equally exposed.
Transplant Day = Day 0
A unique aspect of the transplant process is the way in which the days of transplant are counted. Transplant day is always day 0, and then every day post transplant is counted as a positive day. Conversely, the days prior to transplant are referred to as negative days.
Here are a few things you can expect once the conditioning regimen is complete, and the transplant day has arrived. Prior to transplant, your child will receive medications which are given to minimize the chance of a reaction to the infused cells or to the chemicals used to preserve the cells.
During the infusion, and for several hours after completion, your child will be placed on a heart monitor and pulse oximeter (pulse oximetry is a simple method of monitoring oxygen saturation). Extra vital signs will be done, and the nurse and doctor will be closely monitoring for signs of a reaction. The most common reactions include fever, chills, rash, hives, shortness of breath, and changes in blood pressure or heart rate. Extra doses of medications may be given to control some of these side effects if they should occur. If required, the rate of the infusion of stem cells may also be decreased or stopped for a period of time.
The length of the infusion depends on the volume of the stem cell product. The stem cell infusion is very similar to a blood transfusion and is given directly into the Broviac catheter. Stem cells that have been frozen have had a special preservative added to protect the cells while they are frozen. When the cells are thawed in the Stem Cell Lab, most of this preservative is removed. The remaining preservative is eliminated from the body through the lungs. You may notice a funny odor in the room shortly after the infusion has started; this is just the preservative. Stem cells that have not been frozen may come directly from the Operating Room or may go the Stem Cell Lab for necessary processing that is required prior to infusion.
What to Expect Post Transplant
Now the waiting begins. On average, it takes 2-4 weeks for the new stem cells to find their way into the bone marrow, start to grow, and produce normal, healthy cells. While waiting for engraftment, problems may arise. Some of the more frequent problems include:
||Nausea, vomiting, and/or diarrhea are likely during this period. Chemotherapy and TBI kill growing cells. Cells lining the gastrointestinal tract, including the stomach, intestines, and colon, are very easily damaged by these therapies resulting in nausea, vomiting, diarrhea, and mucositis (mouth sores). The primary symptom of mucositis is pain. Pain in the mouth and throat from mucositis results in difficulty swallowing, leading to a decrease in oral intake and the pooling of oral secretions. Initially, mucositis presents as a mild swelling and redness in the mouth and throat. This process can progress to open sores. Pain medications (Fentanyl or Morphine) are used to relieve your child’s pain. These medications can be given in doses every couple of hours or as a continuous infusion. We want your child to be as comfortable as possible.
||Open sores in the mouth caused by mucositis are not only painful, but they also create a risk for infection. In order to decrease the infectious risk, a routine of mouth care will start the day of admission and continue throughout the hospitalization. This can be a difficult task at times, but it is an important part of post transplant care. Mouth care must be done three times per day without exception in order to keep the mouth as clean as possible.
Low Blood Counts
It is important to know that during the time we are waiting for the new stem cells to grow, your child will need blood product support. All transplant patients require transfusions of blood products throughout their hospitalization and possibly after discharge. The need for blood products is evaluated in part by a complete blood count (CBC). The doctor will order the transfusion of Red Blood Cells (RBC) and/or platelets based on the lab results and other criteria. All the blood products that the transplant patients receive, with the exception of the transplant itself, are specially processed and filtered to prevent adverse reactions and transmission of infections. Some of the terms used when referring to blood products include: irradiated, leukopoor filtered, and CMV negative.
Maintaining good nutrition throughout the transplant process is vitally important. Good nutrition is important because it helps maintain muscle strength, promotes healing of tissues, and provides for the growth of new tissues. During hospitalization, and for a period of time after discharge, we will ask your child to follow a special diet. This low bacteria diet excludes foods that naturally contain high amounts of bacteria which could potentially cause an infection. On admission, the dietitian will give you a list of foods that your child can and can not eat. We do encourage children to eat as long as possible, but with mouth pain and nausea, appetites inevitably decline. It is during this time that nutritional support is started.
There are options available for nutritional support. One option is to continue feeding patients through their stomach by inserting a feeding tube. A feeding tube is a small plastic tube that is inserted through the nose and throat into the stomach. Nutritional supplements can then be given through the tube. Feeding patients by this method has been shown to be very beneficial, but it may not work for everyone.
TPN (total parenteral nutrition) is another option for supporting the nutritional needs of our patients. TPN is a special intravenous mixture of sugar, proteins, vitamins, minerals, and electrolytes that provide the body with the essential nutritional requirements. It is also possible to combine NG feeds and TPN. Each patient will be evaluated, and the most appropriate choice for your child will be discussed with you. As healing begins and your child begins to eat, the TPN and/or NG feed will be gradually decreased over several days/weeks and finally stopped.
The road back to eating can be bumpy. The effects of the Chemotherapy/TBI can alter taste for several months. Some medications can also change your child’s appetite. Nausea and vomiting may remain a problem. Fear of the return of the mouth sores, pain, and delayed healing are just some of the factors that influence the return to a normal eating pattern. Patience, variety in food choices, and perseverance are important in getting through this difficult time.
This is the time that we have been waiting for - the transplanted cells have found their new home and are beginning to produce blood cells once again.
The first cells to return are the WBC's. Now that there are cells to count, we can begin to calculate the ANC (absolute neutrophil count). Engraftment is declared if the ANC is 500 or greater for 3 days in a row. A "normal" WBC count may be several weeks away. Do not be discouraged if the numbers go up and down for a while; this is normal and is expected to happen. It is also important to remember that even though the WBCs are growing in number, these cells are not fully functional, requiring continued infection precaution measures.
The next cells likely to engraft are the RBC's. The need for blood transfusions will decrease over time as the body produces more and more RBC’s.
The last cells to return are the platelets. Again, you will notice a decrease in the need for transfusions of platelets as time passes.
The return to "normal" values may take several weeks. It is not unusual to need some transfusion after discharge. This can be done in the outpatient clinic.
ANC-What Is It?
ANC stands for “absolute neutrophil count.” Neutrophils are a WBC that are very important because of their ability to fight infection. In the daily blood counts, these cells are identified as bands and segs. By calculating the percentage of the total WBCs that are neutrophils, we have an indication of the infection-fighting ability of the patient; the higher the number, the better the protection.
To calculate the ANC, follow this example:
ANC = (bands + segs) x WBC
So if bands =10 segs = 20 WBC = 0.9 (equal to 900)
(10 + 20) x 900 = 270
The ANC = 270
An ANC value of 500 or greater indicates that there is some ability to fight infection and that the risk of life threatening infections is decreasing.
Your child’s immune system is severely compromised by therapies given before and medications given after transplant. This is necessary to increase the likelihood that donor cells will engraft, but it also makes your child very susceptible to life threatening infections. Many precautions are taken to reduce the spread of infections to your child. Good hand washing, special air filtration systems, a visiting policy which limits exposure to ill contacts, special diets that reduce bacteria rich foods, mouth care, and daily baths are a few of the methods used to reduce the likelihood of infection. Even with these precautions, some infections can still occur.
In the post-transplant period, most infections are caused by bacteria, viruses, or fungi that normally live in or on your child’s body. These organisms become a problem when natural barriers including the skin, lining of the intestine, and the immune system are damaged or destroyed following transplant.
When your child does have symptoms of infection (for instance a fever), cultures will be obtained. Cultures are samples of blood, urine, stool, or sputum that are sent to the laboratory to look for specific bacteria, viruses, or fungi that may be causing the fevers. The culture process may take a few days to a few weeks to complete. In the meantime, antibiotic, antiviral, or antifungal medications may be started to treat a presumed infection.
Skin irritation and breakdown can occur for different reasons. Chemotherapy and radiation used in the conditioning regimen can cause damage to the skin. The central line site may become red and irritated from the catheter. If your child is ill enough that movement in and out of bed is difficult, the skin can become irritated and breakdown. The degree of irritation will vary from child to child, ranging from a mild rash or small blister to total body involvement. The following are skin care guidelines:
- Keep the skin as clean and dry as possible.
- Daily baths are a requirement.
- Aquaphor ointment/lotion applied generously as needed to keep skin from getting too dry.
- Close daily inspection of the skin by the doctors and nurses to look for areas of breakdown
- If your child is receiving radiation, have them avoid wearing underwear or any clothing with elastic bands. It can cause burns in those areas.
- Keep the child as active as possible. If they are unable to get out of bed, frequent position changes are very important.
- Use less occlusive dressings on IV sites and avoid tegaderm and prim pore; the adhesive can cause irritation to the skin.
If breakdown does occur, special attention to those areas will be given to prevent them from getting infected.
GVHD and Allogeneic Transplants
A possible complication associated with allogeneic transplant is called Graft Versus Host Disease (GVHD). GVHD is a reaction that occurs when donor stem cells (the graft) recognize patient (the host) cells as foreign. GVHD often starts about the same time as engraftment, although it may be seen any time after engraftment. The symptoms of GVHD may occur within the first 100 days after transplant (acute) or later (chronic).
Acute GVHD usually affect three main body systems:
- Skin – GVHD appears as a fine red rash on the hands, feet, face, or neck. It may progress to involve the entire body and may include peeling and blisters.
- Gastrointestinal tract – GI symptoms may include mild nausea, vomiting, and diarrhea. The symptoms can progress to very large amounts of vomiting and/or diarrhea.
- Liver – The symptoms of the liver often are initially based on blood test results that we are monitoring (bilirubin levels). If GVHD progresses, the liver may become enlarged and tender and cause yellowing of the skin, called jaundice.
The severity of the symptoms of GVHD varies from patient to patient and can range from mild to severe. Medications that suppress the immune system are used to prevent and treat symptoms of GVHD. Cyclosporine, methotrexate, steroids, mycophenolate mofetil are commonly used immunosuppressive medications. Additional medications may be required.
Symptoms of chronic GVHD include:
- Dry skin with thickening
- Dry eyes
- Dry mouth
- Weight loss
- Difficulty eating
Hepatic Veno-Occlusive Disease (VOD)
VOD is characterized by liver enlargement and pain, weight gain, and jaundice. The onset of VOD is typically within the first month following transplant. The chemotherapy and radiation used as part of the conditioning regimen can damage the liver. Damaged cells block the blood vessels in the liver and cause it to swell and not function properly. Treatment may consist of closely monitoring fluid intake and administering diuretics. VOD can be a very serious complication that can progress to liver failure and even death. Each patient is monitored closely for any symptoms of VOD so prompt supportive care may be initiated.
Pneumonia is a problem that may occur any time throughout the post transplant period. There are many causes of pneumonia: bacterial, viral, and fungal infections, as well as damage associated with the use of chemotherapy and/or radiation. Signs of pneumonia include difficulty breathing, coughing, fast respiratory rate, an oxygen requirement, and/or fever.
To keep your child’s lungs healthy, it is helpful to keep your child as active as possible during the hospital stay and after going home. Riding the stationary bike, getting out of bed as much as possible, taking big deep breaths, and coughing all help to clear secretions from the lungs and keep them healthy.
Occasionally after transplant, the donor stem cells either do not start to grow (graft rejection) or start to grow and then stop (graft failure). The risk for these complications is higher for patients with specific diseases (bone marrow failure syndromes, Fanconi’s anemia) and patients in whom the stem cell sources are either unrelated donors or mismatched related donors. Failure of the graft is a rare complication but one that can result in a second transplant or death.
The goal of hematopoietic stem call transplant is to kill all remaining cancer cells in your child’s body so that the cancer does not occur again (relapse) . Sometimes, despite our best efforts, relapse does occur. It can happen at any time throughout the transplant process, but is most likely during the first year post transplant. If relapse does occur, the transplant team in consultation with your child’s primary oncologist will discuss options available to you and your child. Thinking about this problem can be very difficult, but having discussed the possibility of relapse may prepare you if it occurs.
Pediatric Intensive Care Unit (PICU)
Transplant patients admitted to the unit usually stay in their rooms until discharge. It is possible that your child may become too ill to be cared for safely in the Transplant Unit. If your child needs special medications or monitoring that cannot be provided in the transplant unit, the doctors will transfer your child to the Pediatric Intensive Care Unit (PICU). The doctors and nurses in the PICU are specially trained to care for critically ill children. PICU doctors and nurses will help the transplant doctor care for your child. The PICU has different visiting policies from the transplant unit.
Parents/grandparents can visit at any time but cannot sleep at the bedside. The unit can be a very busy and noisy place because of all the special equipment and monitors. This may be a very scary and stressful time. Please ask us or the PICU staff if you have any questions or concerns about your stay there. When your child is well enough, he/she will be transferred back to the transplant unit for the remainder of the hospital stay.