Tinley is 13 months and from birth she has had a heart murmur, which was known to us as an "innocent heart murmur". At her one year checkup, the doctors suggested an echocardiogram for further evaluation.
On March 7th we went in for her heart echo, it was there that we discovered that she has a rare congenital heart defect called Atrioventricular Septo Defect (AVSD). AVSD is a condition where the heart has not fully developed. The condition has left Tinley with three holes in her heart and a malformation of the two valves within the heart (Tricuspid & Mitral valves). These valves are normally separated by heart tissue which divides the right side and left side of the heart. In Tinley's case, the tissue that divides the heart (atrial & ventricular septum) has multiple holes in it. Because the heart did not fully develop, this caused the two heart valves to be connected as one, this is known as a common valve.
We were referred to the University of Michigan Motts children's hospital for additional follow-up and open heart surgery.
Within a week, we were scheduled for an EKG, a second heart echo, chest x-ray, blood work and a heart catherization.
All tests (except the heart catherization) were completed on March 16th, on March 17th we were suppose to return back to Michigan for her heart cat procedure. But to our surprise and to God’s glory, the heart catherization was cancelled later that evening! Tinley’s pulmonary heart pressure had decreased to a safe level within a week! Which now meant that we would be able to have the open heart surgery within 30 or so days.
While at Michigan we learned that the surgery would take 3-4 hours and that she would need to be in PICU the first week. The doctor said that we should plan on Tinley being in the hospital for a month with an additional 2 – 3 weeks at home after she's released.
We are anticipating living in Ann Arbor for the next month, your support will allow us to remain near Tinley and to see her through the surgery and post recovery care.
We plan on posting all updates here, please check in often to see how's she doing or signup below for alerts.
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As you may know, a week ago my parents went to Boston to evaluate their options for my dad. Definitive diagnosis is AL amyloidosis and multiple myeloma (cancer). He is scheduled to have a stem cell transplant later this month. The process itself it quite intense: a week of growth factor injections and stem cell collection via chest catheter, daily visits to check on vitals (each visit will be 8-9 hours per day), high-dose chemotherapy, and stem cell reinfusion. The entire process lasts about 8 weeks, and he will be "quarantined" from interacting with anyone except his doctors and one caregiver, which of course will be my mother, Elfreda Massie. He'll be in Boston through December and after he returns home, recovery can take several years.
How can you help? Prayer, prayer, and more prayer. In addition to your prayers for healing, wisdom, financial provision, peace, strength (and on and on…), you can also donate funding to help offsite the cost of their lodging, transportation, and the cost of treatment.
On February 23rd, Diana and Jonathan took Makayla to the doctor’s office after she spent the night throwing up. While they were there, they had a bump looked at from a fall she had earlier in the year. The doctors took an initial scan and discovered it was a tumor, the size of a baseball. A biopsy was performed the next morning.
After a week of tests, Makayla was diagnosed with high-risk, Stage IV Ignore. It’s devastating news that no parents want to hear, especially in their 16-month-old daughter. It came as a shock since Makayla has never shown any signs of discomfort or pain; she's been a happy child playing, laughing and growing.
Unfortunately, additional tumors were found in her cheek, kidney, spinal cord, and it has spread to 80% of her bone marrow.
Due to the size of the tumor which started near her kidney, she had a nephrostomy put in to drain the urine since it was pressing up against her kidney. A port has been inserted into her chest as well so that she can receive her chemotherapy treatments. Makayla has already received her first round of chemo and the doctors are hoping chemotherapy will shrink the tumors so that no major surgery is needed.
After two weeks at the hospital, Makayla was finally able to go home and see her big brother Jayden. Both Diana and Jonathan are taking periods of unpaid leave for the foreseeable future to take care of their family.
Makayla will have to undergo at least 18 months of chemo and spend more overnights at the hospital. The family has a long road ahead of them and we’re hoping the funds will help alleviate some of the expenses that come with caring for a child with cancer.
Please keep Makayla, Diana, Jonathan, and Jayden in your thoughts.