Many of you have inquired regarding the circumstances surrounding Colleens Leukemia diagnosis. This update is detailed for those of us who want details but if you are not detail oriented please skim over the technical part and be amazed at Gods grace during this time.
About 2 weeks ago, Colleen developed severe pain in her thighs. Four days later, she developed a clear fluid filled blister on her left thigh the size of a quarter. I took her to our pediatrician who felt it was viral myositis or inflammation of the muscle caused by a virus. There was a bit of redness so she put her on an antibiotic. On Monday last week the pediatrician asked me how she was doing. I told her that she was still having a lot of pain. She then suggested she be evaluated by infectious disease at Children’s Hospital. She called the clinic and they had an appointment that day. The team of doctors included Dr Aimee (who is a leukemia survivor) recognized the vague symptoms of leukemia and ordered blood work based on her similar symptoms as a 14 year old when she was diagnosed. There was no clinical reason to order the blood work. Colleen is the same age as Dr Aimee when she was diagnosed. This illness is rarely seen in children over the age of 10. The blood work was repeated Tuesday am to rule out a lab error. The results still showed a low white count the cells in our body that fight infection and low platelets which cause or blood to clot.
We then were seen by a hematologist to evaluate for any signs of cancer. There were no other symptoms of leukemia. He told me that we did not have to do a bone marrow test right away he felt this was a virus. I preferred to do the bone marrow asap because I wanted her treated right away if there was any cancer. We had the bone marrow test the next morning and by one o’clock Wednesday the Dr called to say the results showed leukemia. Colleen was admitted on Wednesday at five pm for more testing and to begin treatment. Thursday morning she had ultrasounds, went for a spinal tap, had chemo placed in spine and had a port placed under the skin to infuse chemotherapy. That night she got 2 different kinds of chemotherapy ( vincristine and danorubicin) in the port. She got more chemotherapy on Sunday (asparagenase or peg). She was doing well only one bout of nausea in 3 days. She was scheduled to go home on Monday but the uric acid levels in the blood were too high. Apparently this can damage the organs if not treated properly. She received medication in her port to bring down the uric acid levels. The uric acid levels in the blood are indicators of cell damage caused by the death of the leukemia cells in the body.
Her uric acid levels came down but her blood sugar levels went up from large doses of prednisone or steroids. Prednisone kills leukemia cells in the body but has many side effects. We came home on Wednesday late afternoon but we have to monitor blood sugar levels four times daily and give multiple doses of insulin. This is difficult for a child who hates needles but she has been very brave. Colleen only has to take the prednisone for a month thank goodness.
Colleen came home on Wednesday evening and has been tired but doing well. She went back to hematology clinic today Friday and had a platelet transfusion, and 2 more doses of chemotherapy (vincristine and donarubicin). She also had another spinal tap under anesthesia and more chemo was inserted in her spine. Colleen did very well but is having some pain in her back probably related to the scoliosis she has and not the spinal tap.
The final results of the blood work came back on Monday and they show that Colleen has B-Precursor ALL leukemia. This is the most common cancer in childhood and has a cure rate of 90 percent. The genetic defect or mutation which caused the leukemia is also the easiest to treat.
We are thankful that God gave Colleen this unusual blister, that there was an appointment available to see infectious disease (she could have gotten very ill if she had spent time in the emergency room), that Dr Aimee ordered the blood work, and that God helped me to insist on a bone marrow as soon as possible so we could begin treatment right away. We are also thankful for Dr Aimee’s visit after her surgery. It seemed as though the Lord sent her to assure me that Colleen was going to be ok. We also learned yesterday that most children with this illness need radiation to the brain and spine but because she has a certain genetic mutation and her only high risk factor is that she is over the age of 10 that the doctors do not feel she needs it. Praise God. We are also thankful for each of you. We are at peace knowing that God is in control and you are praying for us often.
Thank you for your prayers, encouragement, and acts of kindness from helping to clean the house in preparation for Colleen's return home, making meals, sending cards and letters of encouragement, making prayer boards the list goes on and on. I was writing thank you cards but just cannot keep up. Just know that we love you all and appreciate your thoughtfulness. I know God will accomplish much thru this trial. Please pray for our unsaved family and friends. I will send updates to those of you who are not on face book as things develop. Len posts general updates daily on face book if you want instant information. Thank you again. Praise God for his goodness and strength during trying times! Please pray that God will help her appetite she is having pain when eating or drinking maybe a result of the port not being healed yet and pray for improvement in her back pain.
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| Santiago and Cabrera visited Colleen the first day she was in the hospital. |
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