She's a survivor

Alivia is at home recovering from her splenectomy. Thanks to all for the prayers and well wishes!
Pic courtesy Will Haughery.

Health Info #6

Treatment
Your child will receive 4 to 8 days of high dose chemotherapy, and maybe radiation, to destroy any remaining cancer or leukemia cells. This is called conditioning therapy. He/she will get a combination of drugs to get the most benefit from each with the fewest side effects. You can expect your child to have nausea, vomiting, diarrhea, hair loss and skin changes. We will give your child medications and take other measures to decrease the side effects whenever possible.

Your child will be given large amounts of IV fluids throughout the chemo. All of the IV fluids will be given through her central venous catheter. Each day your child will be seen and examined by several people, including a registered nurse, resident, and transplant doctor. All the staff caring for your child are highly skilled and specifically trained for stem cell transplantation.

Your child will be monitored closely throughout his/her stay. Vital signs will be taken at least every 4 hours, and weight will be checked early each morning. These things tell us important things about the care your child needs. A chest x-ray may be performed during your child's hospitalization. This is a routine test that will usually be performed in you child's room.

Lab work will be checked daily. The nurses will draw blood from your child's catheter early every morning.

Once chemotherapy has been completed, your child will become neutropenic. This means he/she has very few white blood cells and is at the most susceptible time to develop an infection. Your child may run a temperature and will be given antibiotics during this period to treat any infection. These antibiotics may need to be changed throughout the course of treatment. Your child's doctor or nurse will explain all of the treatments.
Throughout the hospital stay, and sometimes after discharge, your child will receive blood and platelet transfusion as needed to maintain his/her blood counts.

It usually takes about 2-3 weeks for your white blood cell count to start increasing. As this happens, your child will feel better and eventually be discharged.

Transplant day
Your child will be examined carefully by the doctor the morning of transplant. The stem cell product looks like blood, but thinner and redder. It will be given through the Hickman catheter. The staff will check your child's blood preassure, pulse and temperature frequently during the transplant. The infusion procedure may last anywhere from a few minutes to several hours. Since the stem cells are very similar to your child's own, he/she should not have any problems from it. But if he/she starts having fever, chills or any other unusual feelings, tell the nurse right away.

Since the autologous peripheral stem cells are frozen, a special water bath will be brought into the room to thaw the frozen cells. This first thing you and your child may notice is the taste and/or smell of garlic or creamed corn. This is the preservative used in the storing of the cells. A few people are allergic to this preservative. Your child's nurse will have medicaiton to give to prevent and to treat an allergic reaction.

After the Transplant
You and your child may feel somewhat "let-down" right after the transplant procedure has been completed. There were no fireworks and your child doesn't feel any different.

During the next several weeks we will wait for the stem cells to grow. The transplanted stem cells enter the marrow cavities inside your child's bones by way of the lungs and spleen. The cells begin to divide and produce red cells, white cells and platelets.
"Engraftment" is the term used when your child's bone marrow begins to make these normal cells.

Your child's white blood cell count will still be low because of the chemo so he/she is at risk of infection.

This is an anxious time. The isolations may get boring. You may begin to worry about how differnet things will be for you and your child when he/she is sent home. YOu may worry about what will happen if the transplant doesn't take. Your child's doctor can talk about other choices if that becomes necessary.

Health Info #5

Daily Routine
The skin, mouth and rectum are especially prone to irritation during transplant and will require special care for comfort and to prevent infection.

Skin Care
Everyone has germs on their skin that can cause an infection. Good skin care is an essential part of preventing infections. Your child will need to shower or wash every day using antibacterial soap. We can provide the soap or you may bring a brand of soap you prefer. Daily washing is very important even on days when you do not feel like it. Moisturizing lotion is helpful after the daily bath to prevent drying.

Mouth Care
You will need mouth care 4 times a day beginning at admission. Your nurse will go over the procedure with you. This procedure may chage and be done more often if severe mouth sores develop. When the mouth is healing well, it may be decreased. The nurses will check your mouth several times a day for signs of infection. Let them know of any pain or discomfort. Transplant patients should not drink hospital tap water or ice made from it. You will be given bottles of sterile water for drinking and mouth care.

Peri-Anal Care
Gentle, thorough cleaning needs to be done after every bowel movement. This is especially important if the child is having diarrhea or frequent bowel movements. Pat gently rather than wiping. Pat dry with a clean wipe. A barrier ointment should be used after each cleaning.

Bleeding Precautions
To prevent bleeding, you need to take some special precautions to protect your child. Adolescents should use electric razors instead of blade razors. Discourage child from blowing or picking nose. Keep fingernails trimmed or filed short. make sure your child wears slippers or shoes when out of bed.

Activity
Allow rest for 15-20 min between activites. Encourage him/her to move slowly from lying to sitting to standing so he/she wont' get dizzy. Encourage to stay as active as possible.