On a Wing and a Prayer!

Well, this is our last ditch effort other than living on pain killers. A couple weeks ago, Dr. Shah even ordered labs to rule out Lyme disease! The lady is thorough…and for that we are very thankful.

We have been trying to come up with an answer for my joint pain for over a year now. At first, we thought it was due to the fighter T-Cells from my trial and it would settle down after a few months. Well, that didn’t happen. Tests, drugs, shots, all came up short. Then I read an article that mom found in the newspaper about a lady who had been on Levothyroxine (Synthroid) for years and had developed severe joint pain, insomnia, fatigue, and weight gain. Ding-ding-ding-ding!!!! Those are all of MY symptoms, and I went on Levothyroxine just before my trial. They removed my parathyroid a couple months before my CAR T-Cell trial, before my immune system plummeted again. And I started on the drug shortly thereafter. I have spent the last year blaming my pain on something related to the trial (chemo, T-cells, etc) and never thought to back up a month or so! :/

This lady’s doctor had switched her to the bioidentical hormone, Armour Thyroid. (There are a couple different brands but they all come from the same source.) Within SIX WEEKS her side effects were gone! Her question was why more doctors do not recommend the natural alternative? Good question.

So armed with this information, we did further research and found additional support to the claims of challenges with the synthetic option and benefits from the natural one. While everyone is different and many people have no issues with the synthetic version, many do…including my aunt and my daughter.

Confident that we had found the answer, I went to my follow up appointment at MDAnderson ready to ask, even battle, for a change in my medication. Well, that was not as simple as it might seem. My follow up was with my pain doctor, and he could not change my thyroid prescription. He was not particularly adverse to the idea, but he said I’d have to contact my endocrinologist. So I got online and emailed my appropriate doctor, told him the whole story (I’ve actually seen him during this process), and asked for his help. A few days later, I got a call from his nurse saying that the doctor really did not “recommend” the natural version of the thyroid treatment. And did I know it came from PIG?! I assured her that I did know the source and that I wasn’t requesting permission or recommendation. We had already done our research. No one in MDAnderson had been able to do anything at all to help or remedy my pain other than possibly put me on opioids indefinitely. This was possibly something that could ELIMINATE the pain. And I want to try. I have taken poisonous chemos in the attempt to save my life. What would it hurt to try a natural alternative to try to take away my pain? She said she would call me back.

Several days later, just when I was about to give up, I got a call back from the nurse. HE SAID YES! And this morning I started my first dose. Please pray with us that this, in time, will have a positive effect on my joints. If it helps with the insomnia, fatigue, and weight gain, well that will just be a bonus!!

What a simple blessing to walk with strength again.


“But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary;
they shall walk, and not faint.”
Isaiah 40:31

Childhood Cancer is No Joke

This past Monday, a precious four-year-old named Grant lost his battle with a stage IV cancer called neuroblastoma. His variety was extremely rare. He fought valiantly for two long years until a fungal pneumonia, along with other complications, overcame his weakened body. The doctors, his parents, Michael and June, and Grant himself fought until the bitter end. He was brave. He had faith. He is now with his Lord. His family, his community, all those who have prayed are broken hearted by the loss of this spirited little super hero. But all are thankful that we know Whom we have believed and that one day will be reunited.

“Each year, the parents of approximately 15,700 kids will hear the words ‘your child has cancer.’ Across all ages, ethnic groups and socio-economics, this disease remains the number one cause of death by disease in children. Despite major advances – from an overall survival rate of 10 percent just fifty years ago to nearly 90 percent today, for many rare cancers, the survival rate is much lower. Furthermore, the number of diagnosed cases annually has not declined in nearly 20 years.

• Every day, 43 children are diagnosed with cancer.
• 12% of children diagnosed with cancer do not survive.
• Children’s cancer affects all ethnic, gender and socio-economic groups.
• The average age of children diagnosed is six.
• More than 40,000 children undergo treatment for cancer each year.
• 60% of children who survive cancer suffer late-effects, such as infertility, heart failure and secondary cancers.
• There are approximately 375,000 adult survivors of children’s cancer in the United States.
That equates to 1 in 530 adults ages 20-39.”
[CureSearch for Children’s Cancer]

“Many childhood cancers have much higher survival rates when they are diagnosed in the early stages of the disease. Unfortunately, childhood cancers are sometimes overlooked or misdiagnosed because early symptoms are mistakenly attributed to more common injuries or illnesses. It is recommended that children have regular medical check-ups, and that parents pay close attention to the development of unusual signs or chronic symptoms, such as:

Persistent fever, nausea, or illness, often accompanied by vomiting
Tendency to bruise easily
Unusual lump or swelling (particularly around the neck, abdomen, chest, pelvis, or armpits)
Loss of energy and pale complexion
Headaches, often with early morning vomiting
Lingering pain in one area of the body
Abrupt vision changes
A whitish color behind the pupil
Sudden weight loss
Limping

Genetics may predispose some children to developing a specific type of cancer—if you are concerned that your family history puts your child at a heightened risk, discuss your worries with your child’s pediatrician. He or she may recommend imaging tests (i.e. MRI, x-ray), additional screening tests, and/or a biopsy if your child presents with an abnormal lump or tumor. The biopsy will involve removing some or all of the cells within the tumor for closer examination under a microscope.”
[American Childhood Cancer Organization]

“Childhood cancers are mostly those of the white blood cells (leukemia’s), brain, bone, the lymphatic system and tumors of the muscles, kidneys and nervous system. Each of these behaves differently. Cancers in very young children are highly aggressive and behave unlike malignant disease seen at other times of life. The median age for childhood cancer is six. Children frequently have a more advanced stage of cancer when they are first diagnosed. 80% of children show that cancer has spread to distant sites in the body when the disease is first diagnosed.”
[www.ChildCancer.org]

“A child with cancer must be diagnosed precisely and treated by clinical and laboratory scientists who have expertise in the management of children with cancer. Advances in treatment have been made in some childhood cancers; however, many cancer types offer very aggressive treatments with lower survival rates. Many treatments include: several rounds of chemotherapy, tumor removal, radiation therapy, bone-marrow-transplantation, and various clinical procedures.”
[www.ChildCancer.org]

This is something that was found true in Grant’s situation. He endured strong, antiquated, adult-type treatments because very little had been discovered for his disease and for his size.

Only 3% of government funding goes to pediatric cancer research. A fund was established in Grant’s name to try to start making a difference, one dollar, one child, one step, one prayer at a time.

www.grantinggracefoundation.org

Tomorrow at 11:00 a.m. Eastern Time, there will be a celebration of Grant’s short but amazing life. His favorite colors were red and blue and he LOVED superheroes, especially Spider Man, Iron Man, and Captain America. Folks have been asked to wear those shirts or colors in his memory. At 12:15 p.m. Eastern Time, there will be a balloon release there in Georgia. But if anyone wants to join in from wherever you are, Grant will be able to see them from where he is!

Please pray for the Gossling family as they continue their journey without their beloved Grant…one step, one prayer at a time. And if you have been moved or touched by this family and their little superhero, please consider giving to childhood cancer research. Then hold your kids and thank God for giving you one more day.