Bone marrow is a spongy tissue found inside of bones where all of the blood cells are produced. Every type of blood cell in the marrow begins its life as a stem cell. A stem cell can be called a “parent cell” because it divides and forms the different cells that make up the blood and immune system. Stem cells produce white blood cells that fight infection, red blood cells that carry oxygen, and platelets that are clotting agents.
Ashtyn has a high risk, rare leukemia. She was very blessed the chemotherapy used during her 2nd round in mid-March was effective and killed all her cancer cells. Though the cancer is gone, there is always the risk that the cancer will come back (relapse). With each round of chemotherapy, cancer cells become more resistant making it more difficult to kill them if they do come back. If Ashtyn were to relapse, there is no guarantee that the chemo would completely kill her cancer again. In order to do a bone marrow transplant, a patient should be 100% cancer free. Since Ashtyn is cancer free the idea is to do a bone marrow transplant now to minimize the risk of relapse and provide Ashtyn with the best chance for a long-term recovery.
The idea of a transplant is to replace someone who has unhealthy marrow with marrow from a healthy donor. Chandler, Ashtyn’s 14 year old brother, had a blood test in February and was found to be a perfect 10/10 genetic match for Ashtyn and will be donating his stem cells to her. Each sibling has a 25% chance of being a match. Only 25 to 35% of bone marrow recipients are matched with a sibling. We are very blessed. The transplant is the transfer of healthy stem cells from Chandler to Ashtyn.
In two days (Tuesday) Chandler will go under general anesthesia in an operating room where his stem cells will be collected from the bone marrow in his hip bones. A large needle will be inserted into the back of his pelvis and marrow will be withdrawn. After the procedure Chandler will experience some discomfort in his lower back/pelvis for a few days, but he will go home that day. There are no long-term effects of the procedure or donation on Chandler.
A bone marrow transplant is a difficult procedure to go through. Ashtyn received eight rounds of total body irradiation June 4th- June 7th. She is now receiving high doses of chemotherapy June 8th and 9th. The purpose is to eliminate whatever bone marrow and stem cells she has left and make room for the new marrow to be transplanted. On Tuesday June 11th, the stem cells from Chandler will be put into Ashtyn through her central line like a blood transfusion. The stem cells will then find their way to Ashtyn’s marrow and mature into different blood cells. “Engraftment” occurs when Chandler’s stem cells begin reproducing enough new blood cells that they are measurable in the peripheral blood. Engraftment usually occurs between 15 to 30 days. Engraftment day is a huge day for Ashtyn. She will physically begin to feel much better when engraftment occurs. When engrafted, her immune system will be Chandler’s immune system. Her cells and blood will be Chandler’s cells and blood. They will have exactly the same blood, 100% DNA matched.
Supportive care is needed while Ashtyn has an ineffective bone marrow, waiting for her new marrow to mature. Antibiotics, anti-fungals, and antiviral medications are given to help prevent infection. Blood tests will be done frequently to check medication levels, blood counts, signs of infection, side effects, and a host of other things. Red blood cell and platelet transfusions will commonly be done while Ashtyn’s marrow is unable to produce cells and as Chandler’s marrow is maturing enough to do so. Nurses and doctors will also monitor Ashtyn’s vital signs closely and strictly measure the fluids she receives and puts out. Great effort will go into providing the most protected and sterile environment possible. Ashtyn will not be allowed to leave her room. Everyone will wash their hands meticulously. Physical therapy will help Ashtyn exercise a few days a week.
There are quite a few complications and side effects that can occur with a bone marrow transplant. Here are some of the things you can pray will be minimal for Ashtyn: Infections, mouth sores, mucositis (inflammation of the mouth and GI tract), nausea, vomiting, pneumonia, high blood pressure, low blood pressure, respiratory distress, blood transfusion reactions, graft failure, graft vs. host disease (when Chandler’s immune system attacks the tissue of Ashtyn’s skin, liver, or digestive tract), and liver, kidney, or heart damage.
When Ashtyn’s absolute neutrophil count is above 500 for several days, if she is free of infection, and if she is able to take necessary medications by mouth, she can go home. It will be required that she stay within 30 minutes of Primary Children’s Hospital in case of an emergency for at least 100 days after the bone marrow transplant. She will also return to the outpatient clinic frequently for blood work, exams, and potential blood transfusions. As time passes after the transplant, the frequency of clinic visits will decrease. If a fever ever arises, Ashtyn will be admitted into the hospital for antibiotics until the fever is gone. We are grateful to live 20 minutes from the hospital. I admire the strength of families with bone marrow transplant kids who live further than 30 minutes from Primary Children’s who must relocate for 100 days to ensure their children are safe.
Ashtyn is on a very restricted “antimicrobial diet” and she will continue to be on that diet for several months. She is not allowed to eat certain cheeses, deli meat, deli or restaurant food, uncooked herbs or spices that are added to food after cooking, bleu cheese, commercial salsa, certain raw vegetables, fruits, berries, raw nuts, soft-serve frozen yogurt, ice cream, milkshakes, frosties, slurpees, snow cones, and movie popcorn. She has to have individual, single-serving containers of things like butter, mayonnaise, chips, cookies, candy, and anything else that is bulk, typically left opened, and used more than once. If a food item is cooked or opened and not eaten within 30 minutes, the remainder of the food or drink must be thrown away. Anything that is cooked must be heated to 165 degrees to assure it’s safety.
To fully recover from a bone marrow transplant takes a while. It will take months for Ashtyn to regain her energy level and a minimum of 9-12 months for her immune system to return to its normal function. She will not be allowed to return to school, crowded events such as church, movies, parties, or restaurants, or to swim in lakes or pools until her immune system shows significant signs of recovery.
As you can see, the next several weeks and months have the potential to be very challenging and stressful. Even though there are many reasons to worry or be scared about what might or could happen, our family still is experiencing the peace that has come to us as we know God is watching over Ashtyn. He has been in charge from the moment she was diagnosed, and long before that. The prayers and support you continue to offer on our family’s behalf are physically and spiritually felt. We feel immeasurable strength from all you continue to do for us. With your continued prayers and God’s loving care, it is all going to work out.