Tom and I had to sign a consent form before we began this process that listed all of the known risks/discomforts and long-term effects associated with a bone marrow transplant. I hate putting all of these scary things out here but the fact is they are all realistic risks/effects that Grayson faces. There are so many people praying for my son and I thought this might help you all to know what to pray for. Please do not be discouraged by this list as God is bigger than all of them. However, I do ask that you pray that God would spare my son from each of these items specifically.
The major risk of high dose therapy and BMT is the development of complications following the treatment.
a. Loss of body and scalp hair. This generally returns 2-3 months after treatment, though it may not be the same color and texture as before. In about 5% of patients’ hair thinning or loss will be permanent.
b. Skin rashes and darkening of the skin color. (Grayson already has the skin rash)
c. Nausea and vomiting, that usually lasts several hours after each dose of drug. (Grayson is having a hard time with this).
d. Sore mouth and throat with or without canker sores.
e. Diarrhea which may become bloody.
f. Mucositis occurs when cancer treatments break down the rapidly divided epithelial cells lining the GI tract, particularly in the oral cavity, leaving the mucosal tissue open to ulceration and infection. Mucositis can occur anywhere along the digestive tract from the mouth to the anus. If he develops this condition he will only be able to have IV nutrition which can further compromise liver function.
g. Bleeding into vital tissues
h. Urinary bladder damage with blood in urine.
i. Need for transfusion of blood products which carry a small risk of transfusion reactions and transmissions of infections.
j. The immune system will be suppressed, increasing the risk of infections, which can be life-threatening.
k. Fever and possible infections of the blood stream or tissues.
l. Difficulty breathing and pneumonia.
m. Liver function abnormalities (such as hepatitis from infections or drugs and veno-occlusive disease (VOD) that may be progressive). Busulfan has been known to cause VOD during the month following transplant.
n. Other organ toxicities such as seizures, kidney failure, function abnormalities and very rarely, damage to the heart muscle.
o. Failure of the marrow to grow and produce normal red blood cells, white blood cells and platelets which would be fatal.
p. The development of graft-versus-host disease (GVHD) with skin rashes and mucous membrane damage, diarrhea, and liver damage. This can be progressive and may be life-threatening.
q. Transient or permanent sterilization.
The long term risks are largely unknown, but may include:
a. Changes in hormone gland function
b. New cancers induced by the treatment
c. Cataracts
d. Relapse (Leukemia grows back despite the BMT)
Also an ongoing concern is Grayson’s central line. It is an opening to his skin and his blood stream which is always at risk for infection. Please pray that his central line does not become infected because it is going to be in place for at least 6 months and during this time we need it to stay infection free to ensure Grayson can get all the medications and fluids/nutrition he needs.
Thank you to all of the people praying for my son. Again God is bigger than all of these things and he is faithful to answer prayer.
Bringing these before the Lord! Your faith is incredible and our God is FAITHFUL ~ Lisa
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