The Topels Miracles and More

Hello Everyone,

My name is Brooke Lenning. I am the Topels neighbor.

Justine, Ida, Dexter, and Xander need our help. On December 8th Ida was admitted into the hospital. This week it was determined that she is suffering from Chronic Graft vs Host Disease.

Below is a summary from Justine,

“Ida began her journey to a cure for Beta Thalassemia in February 2021. That’s when I found out she qualified for a Bone Marrow Transplant. As she is adopted, it is a non-relative transplant.

There was a perfect match in the US that had agreed to donate. Unfortunately, he changed his mind last minute.

Next step was to find a not perfect match. And a 27 year old female from the UK agreed to donate. We were a go for transplant! Ida was admitted to the hospital Sept 2021. She went through many surgeries, including harvesting her bone marrow as an emergency back up, total body irradiation, and chemotherapy to prepare her body for transplant.

October 5, 2021 was transplant day. Unfortunately after weeks of waiting and multiple bone marrow biopsies, it was determine that transplant failed.

Ida went through total body irradiation and chemotherapy a second time. This increases her risk of being infertile or developing cancer later in life. Life changing decisions were made.

The team was able to set up a second transplant with the same donor, who said yes a second time. On December 9, 2021, Ida received her second bone marrow transplant. Within a week we knew it was successful and she had counts. She got to go home January 10, 2022 after spending 109 days in the hospital.

She thrived at home and recovered so quickly. She remained home bound and my sister and I took care of her at home 24/7.

Unfortunately, I lost my job on April 5th. The company won’t admit it, but they let me go because of my needing to care for my daughter and we’re unwilling to let me work from home twice per week plus be flexible for Ida’s doctor appointments.

I’ve been unemployed since April due to needing flexibility to work from home twice a week. There is a position opening up at Medtronic on February 24th that I will apply for and hopefully get. I’ve been working with the hiring manager and I have the skill set they are looking for, yay!

Ida became Jaundice in December after having no complications post transplant. On December 8th Ida was admitted to the hospital.

Ida had biopsies done of her skin, liver, colon, and large intestine to rule out or confirm chronic Graft vs Host Disease. She also had a bronchioscope and flush of the lungs.

The results were positive for Graft vs Host disease (GVHD). This is where the donor cells reject Ida’s own cells as foreign and attack them.

As soon as it was confirmed, treatments with steroids, antibiotics, antifungals were started. Unfortunately, her breathing has continued to deteriorate.

On Thursday, she had another bronchioscope procedure done and the team decided to intubate her to protect her lungs as they recover. Her team wants to rule out infection as they continue to treat her for GVHD.

Ida will have this disease for the rest of her life. However, once it is well managed, she will get to go home. We have a long way to go. I do not know what the future looks like with a child with GVHD, but one day at a time is our motto.

Ida is 10 years old. She has two big brothers. Xander is 15. Dexter is 13. We have one bird at home, Kikoa, which is a Sun Conure.”

Friends, family, neighbors, and strangers we are asking for prayers, prayers above all. But if you can, if you have capacity for more, please consider donating.