The leaflet entitled 'My child needs a stem cell transplantation' contains detailed information. We have selected the most important matters for inclusion in this communication.
What are stem cells?
Stem cells occur throughout the body and are a kind of 'master cells' that constantly make new cells. The stem cells that make blood cells are found in bone marrow. Bone marrow is a soft, spongy material located in the central cavities of our bones. Bone marrow is our 'blood factory' because that is where our blood cells are made: red blood cells (erythrocytes) that carry oxygen throughout our body; white blood cells (leukocytes) that help fight infections; and platelets (thrombocytes) that play an important part in initiating blood clotting.
Why do a stem cell transplant?
Sometimes something in the production of new blood cells goes wrong in the blood factory. This can happen for instance in children with certain types of leukemia, a genetic blood disorder such as Fanconi anemia, or a metabolic disease. A stem cell transplant is required to repair the blood factory. In this procedure, the defective stem cells are replaced with stem cells taken from a donor. In children, bone marrow stem cells or umbilical cord blood stem cells are used. The donor stem cells are administered by intravenous infusion.
Finding a donor
Finding a suitable donor is crucial here.
Every person has a blood type (also called a blood group): for example, A, B, or O. These blood types say something about red blood cells. White blood cells are also classified by a kind of blood type. This is called HLA typing. The 'white blood type' has many more variants than the 'red blood type'. A suitable stem cell donor has (almost) the same HLA typing as your child. This minimizes the risk of donor cell rejection and transplant infectious disease.
Usually, your treating physician first checks whether there is a suitable donor in your family, like a parent or a sibling. Their blood is examined to see if the HLA typing matches that of your child.
An unrelated donor
If there is no suitable donor in your family or if the treatment team prefers an unrelated donor, the worldwide donor bank is searched. It contains the white blood types of all people who have registered as stem cell donors. The chance of finding a suitable donor is quite high. Usually, one is found within a few months if not weeks.
SCT coordination, transplant doctor and nursing specialist
The Stem Cell Transplant (SCT) coordination department and the planning office jointly coordinate the stem cell transplantation and all associated matters. You can address your questions about practical matters and planning to them.
Two interviews will be scheduled beforehand with the transplant doctor who will explain the stem cell transplant procedure and what lies ahead for you. You can ask the transplant doctor any relevant medical questions you might have. You will also meet the nursing specialist who will guide and support you during the preparatory phase, your child's hospitalization and the post-transplant phase.
Stem cell transplantation is a major intervention with the risk of life-threatening complications. Consequently, various interviews will be arranged for you with doctors before the procedure takes place and you will receive an information letter with a brief account of those interviews.
Your child will first undergo a number of tests prior to undergoing the stem cell transplant. The tests depend on your child's disorder. The medical pedagogical assistant can help you to guide and prepare your child for these tests. These can include:
- Blood tests
- An EKG and ultrasound of the heart
- Dental checkup
- Lung and lung function test
- Examination conducted by the physiotherapist
- Examination conducted by the ophthalmologist
- X-ray examination (CT scan, possibly an ultrasound of the abdomen and a photo of the hand)
- Preparation for total body irradiation (TBI)
Central venous catheter (line)
In order to administer your child’s medication during and after the transplant, a central venous catheter (line) will be inserted soon after your child is admitted to hospital. This catheter is a flexible line (tube) that is inserted under the skin into a large blood vessel. A small portion of the line protrudes outside the skin. Various IV lines can be connected to this line through which medication, fluids and nutrients can be administered directly into the blood. There are different types of lines: Broviac, Hickman and PICC line. The pediatric surgeon inserts the line under anesthesia in the surgery department of the Wilhelmina Children's Hospital. Alternatively, a PICC line can be introduced under sedation. If your child has been fitted with a visible implant tag (VIT), the tag can simply remain in place.
Just before the transplant, your child will undergo intensive pretreatment, also known as conditioning, comprising chemotherapy, serotherapy and/or radiotherapy. Chemotherapy destroys your child's bone marrow cells to make room for the donor stem cells. Furthermore, chemotherapy and serotherapy suppress the immune system. This prevents your child's body from rejecting the donor cells or the donor cells from attacking your child's body (see Chapter 5). Some children also undergo total body irradiation (TBI). This usually occurs twice a day on three consecutive days. This treatment is provided in the radiotherapy department of the UMC Utrecht.
* More information about the different types of chemotherapy and serotherapy, radiotherapy and their side effects can be found on the medicine cards in the Diary Agenda.
Selective intestinal decontamination (SID)
Everyone has bacteria and fungi in their stomach and intestines. Normally, those bacteria and fungi are harmless, but in someone with a weak immune system, they can cause an infection. Your child will therefore be given several medicines as a precaution against these bacteria and fungi so as to reduce the chance of infections inside the body. This combined medication is called selective intestinal decontamination (SID). Your child will receive the SID medication through the catheter, in tablet form or as a drink.
When your child starts SID, we take cultures from their throat (with a cotton swab) and from their stool to find out which bacteria and fungi your child is currently carrying. These cultures are called screening cultures and are repeated every week during hospitalization, until your child is allowed to stop SID.
Duvet and pillow
Your child may bring their own duvet and pillow, which must be washed at 40 degrees beforehand.
Your child is to wear clean clothes every day for hygiene reasons. Keep in mind that your child may vomit or get diarrhea. Therefore, bring a sufficient amount of clothes for your child and for yourself. Wash your child's clothes at 40 degrees just before being admitted to hospital.
Playthings and cuddly toys
Your child may bring playthings along that have been cleaned at home first. Wash cuddly toys at 40 degrees just before admission.
Be sure to prepare your child that you will be wearing a mask when you are near them during their hospitalization. You should only remove your mask when you are more than 1.5 meters away from your child. This also applies to visitors. Your child must wear a mask when leaving their hospital room. Your child does not need to wear a mask outdoors.
Which items are allowed to be taken to the hospital?
For hygiene reasons, you are not permitted to bring just anything into the hospital. Only items that are still new and in their original packaging, or materials that can be washed or cleaned, are allowed. No flowers or plants are allowed in the room either. Things made of cardboard are permitted, but your child may not tear, cut or paste the cardboard because it might contain mold. If you are uncertain about whether or not something is allowed, please ask the nurse.
What is the procedure for a stem cell transplant?
A lab technician brings the stem cells to your child's room in an IV bag. There they are administered to your child through the line. It takes between 30 minutes and two hours to infuse the stem cells. Your child is connected to a monitor during the infusion procedure.
* This is a special moment that you might want to capture on photo or film. That's allowed, of course. However, you may not post an image of the infusion bag on the internet or social media.
It takes a while for the donor stem cells to 'settle'. Only then can they do their job and gradually create new cells. Because of the pretreatment, your child's own bone marrow is switched off, so that for the moment no new blood cells are produced. If necessary, your child will receive a blood transfusion or a platelet transfusion during this post-transplant phase.
The Máxima has parent-child suites. With your own suite you can stay close to your child and still have your own space. The SCT department's parent-child suites are isolation rooms with an antechamber and special air treatment. A glass wall separates your room from your child's. Your access to your child's room is via the antechamber. If the situation allows, your child may come out on the balcony. Always discuss this with the treating physician first. Up until the day of transplant, your child may go outside wearing a mask or with a rain cover over the stroller. But please make sure you do not linger on your way out and back to your suite. You may take off the mask once outside.
As from the day of the stem cell transplantation (when your child's immune system is very weak) your child may go outside after 6 pm when it is generally quieter in the corridors. On weekends your child may go outside at any time of the day. However, we do not recommend contact with people other than regular visitors during this phase, because of the risk of infection.
Once your child is no longer aplastic, that is to say once the white blood cell count, particularly the neutrophil count, is more than 0.5, your child may venture outside all day.
We also advise you not to venture too far out in case of an emergency. If you use the elevator, make sure that no one else is in the elevator, except for the nursing staff and any of your visitors.
You must always wear a mask when in close proximity to your child. You may only remove your mask when you are more than 1.5 meters away from your child. This also applies to visitors. You must also wear a mask if you wish to sleep right next to your child's bed. Outside the isolation room, you are required to wear a mask only if your child is transported in bed and cannot or does not want to wear a mask. Nurses who accompany you will also wear a mask.
Your child must wear a mask when on their way out of the building. There is no need for a mask on the balcony as long as your child stays at least 1.5 meters away from other people.
Chemotherapy can affect your child's oral mucosa (mucositis). Your child will develop sores in their mouth and eating and drinking will be painful. There is also a greater chance of infection of the gums and mucous membranes. Oral hygiene is therefore important; brush your child's teeth with a soft toothbrush after every meal and before going to bed. Sometimes it is necessary for your child to rinse their mouth with more water or physiological salt solution, for example.
After brushing, place the toothbrush brush side up in a glass or cup so that it can thoroughly air dry. Use a new toothbrush every month.
Oral care is also important if your child is tube feeding. In any case, brush your child's teeth twice a day and if necessary have them rinse with water in between times to keep the mucous membranes moist.
It is very important to observe proper hand hygiene. You will be given special hand washing instructions. Everyone who visits your child must adhere to those instructions. Rings, bracelets and watches are not allowed during hospitalization.
Your child is to be bathed every day and dressed in clean clothes. Wear clean clothes yourself too. This also applies to all those who visit your child.
If your child has their own duvet, the duvet cover must be changed every day. Alternatively, you can put a clean sheet under the duvet every day and change the duvet cover once a week. The Máxima has washing machines at your disposal.
Playthings and cuddly toys
Cuddly toys are to be washed at 40 degrees every week during hospitalization. Your child may use a cherry stone pillow or a cuddle heat pack (available from the Parents, Children & Cancer Association (VOKK). They too must be washed every week. You can heat the cherry stone pillow/cuddle heat pack wrapped in a clean pillowcase in the microwave. Your child may not tear, cut, or paste cardboard because it might contain mold. Ask the nurse if you are unsure whether something is allowed.
Food and drink
Your child will be served food that is prepared in the central kitchen according to SCT guidelines and brought to their room on the food cart. If you need advice, the dietician can come by. If you want to breastfeed your child, first consult the treating physician, because special rules apply. Any teats and bottles must be boiled for three minutes every day.
You are expected put clean sheets on the bed in the parent's room every other day, and change the duvet cover every Monday. The bed, the mattresses and pillows may not be moved into your child's room because of the risk of mold. Whenever you sleep next to your child, you must lie on a stretcher. Your child may not lie on the stretcher because of the risk of mold in the fabric mattress. The stretcher's linens are to be changed every day and the duvet cover every Monday.
Siblings and friends over the age of sixteen may sleep in your child's room instead of a parent. The same rules apply to them.
It is important that the door between the parent's room and the antechamber is ordinarily kept closed because of the special air pressure system. The door may therefore not be kept ajar using some sort of doorstop, like a towel, for instance.
* Your child may only enter the parent's room to get to the balcony.
Your child's visitors
Besides parents and siblings (of at least six years old), your child may choose four regular visitors aged six years and over. Those regular visitors:
- are at least six years old;
- have had or have been vaccinated against chickenpox;
- have no eye, skin, respiratory or intestinal infections;
- have not been in contact with childhood illnesses;
- have been vaccinated against whooping cough and measles.
Only three people in addition to your child may be in your child's room at any one time.
Visitors in the parent's room
Four (other) additional visitors may visit the parent's room. They must be 12 months or older, may not be ill and must have had or been vaccinated against chickenpox. They may not go into your child's room. Especially select people who are helpful to you as a parent/parents and who can support you.
Visits from siblings under six years old
Siblings under the age of six are only allowed in the parent's room. Most childhood illnesses occur at that age. It is wise to consider carefully in advance what care should be arranged if a sibling becomes ill during the transplant period.
- Babies up to six months of age whose mothers have had chickenpox are not contagious and are allowed in the parent's room.
- Children between 6 and 12 months old cannot be vaccinated against chickenpox and are only allowed in the parent's room if they have had chickenpox.
- Children who are at least one year old and who have not yet had chickenpox can be vaccinated by the family doctor.
Most children generally adapt quickly and well to being isolated. However, hospitalization and treatment can change your child's behavior. So it can be difficult to find a proper balance between parenting and sparing your child. Nevertheless, education and setting boundaries is important. This gives your child a sense of security. For more information per age category, please refer to the leaflet.
A stem cell transplant has an impact on your entire family. You spend much of your time with your sick child, but your other children also need attention and care. Usually, there are people in your surroundings who would like to help. Accept the help you are offered. It lets you focus your energy on your sick child and yourself.
Family, friends and acquaintances will often ask how your child is doing. That's fine, but there are times that all those questions are a bit too much. Think of a way to keep your surroundings informed. For example, assign a contact person to whom people can address their questions, or write a blog or an e-newsletter.
When you get back home, you also have time to think, not only about the past several weeks, but also about the future, about what lies ahead for you and your child. You have to deal with all sorts of things again. Besides caring for your sick child, there's your normal housekeeping, your job, the care for your other children (if any) and the attention for your partner and yourself. You may not always get the understanding you would like from your surroundings, but that's usually because people do not know how to express themselves.
In the beginning after returning home, you are required to visit the hospital's outpatient clinic every week for a check-up. During those check-ups we closely monitor your child's condition and how their immune system is developing.