April 14, 2016

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



April 1, 2016

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.



March 28, 2016

2016, March 28 – My Baby Girl

This morning, I am packing my bag and heading up to the Dallas area to spend a couple days with my baby girl. She’s turning 31. And she has three babies of her own. When did we get here?

Wasn’t I just 31? Wasn’t I just 13 for that matter?! How quickly the years go by! I remember my mother telling me when my children were little to cherish the time because it goes by so fast. But DAYS can be long as a young mom, and you don’t realize that those days turn into years until you blink and they’re in school; and then you blink again and they’re graduated, married, with kids of their own!


My girl was often the one to give me a little lip in the old days. But she is now the one who talks to me the most…multiple times a day, who knows the heart of my every tone, who makes a game of helping me find the words that now so often escape me. We talk about recipes, raising kids, doing life. She makes me laugh. I give her perspective.

She has the strength of the women of our family. The girl is amazing. She juggles being a mommy to three busy, adorable, loving, crazy children, and babysits her cousin’s one-year old. That makes four! Plus, she runs two businesses out of her home in addition to simply taking care of EVERYTHING. She has an internet business called, It Works!


And she has a fast growing bakery business, making beautiful and delicious homemade cakes and cookies for just about any occasion, called The Purple Kitchen. She reminds me of the Proverbs 31 woman using her gifts to provide for her family; her lamp does not go out at night, and she is never idle.

“Many daughters have done well, but you excel them all.”
Proverbs 31:29


I am thankful for my baby girl. I am looking forward to a couple days of dishes, cooking, laundry, constant noise, books, songs, and loving on her and her family. We’re going to have a Girls’ Night Out on her birthday! Make a few more memories. Have a few more conversations. Laugh a lot. Maybe even shed a tear. That’s ok. That’s life. That’s living. That’s part of knowing.

Happy Birthday, baby. I love you!


“Only be careful, and watch yourselves closely so that you do not forget the things your eyes have seen or let them fade from your heart as long as you live. Teach them to your children and to their children after them.”
Deuteronomy 4:9


March 24, 2016

Head, Shoulders, Knees and Toes

Two and a half glorious weeks. Then, the steroid injections wore off. :/

It’s been just over a year now since the joint pain began. It started popping up in my Facebook feed in Remember Last Year? Yes, I remember…thank you. It started, again, just after my CAR T-Cell trial. (I also had it after my SCT, but it had eventually gotten better.) Dr. Shah, at the time, thought it was a good news/bad news thing. That my T-cells were in there fighting the bad guys but in doing so causing inflammation in my joints. Well, that was a good story last year, but those T-cells are long gone and that story no longer holds up. So what now?

Good question. Over the last several months, doctors from many departments have run countless tests only to come up with the brilliant conclusion that “nothing appears to be wrong.” Really?! Then why can’t I walk for any length of time or climb stairs or bend and get up by myself or pick up my grandbabies?!?!!! It’s not like I’m old, and my cancer is in a manageable place. So what’s the answer?

“Chemo did it.” Well, one doctor says yes while another says no. Research tells me that it’s a distinct possibility. Is it reversible? I don’t think so. I spoke to someone just today whose friend had a double knee replacement because of chemo.

But there doesn’t seem to be any knee damage per se. And meds for inflammation didn’t help. Everyone seems to be stumped. The steroid injections helped wonderfully. They just didn’t last.

This has been almost harder to deal with than the cancer itself. We’ve gotten through the life and death aspect of my cancer…twice. We still live with it being constantly on the back burner, so to speak. We have learned how to live with my “new normal.” We are thankful for every single day!

But losing my mobility has been hard. As much as I’ve always been a mover and a shaker, it now hurts to do either of those! What pains me the most is two-fold…not being able to lift and carry my grandchildren and not being able to hike our property and all the other beautiful places we love to go. You learn to improvise, but it’s just not the same.

Over the last few years on our anniversaries, we have gone zip-lining twice, hiking in the Hill Country three times including climbing Enchanted Rock, going to Pedernales Falls, Hamilton Pool, Westcave Preserve, and countless wineries and antique shops dotted along the way. There’s more, but those are the highlights. The point is, we enjoy the outdoors and all it offers. Unfortunately, knees are a necessary component to climbing and hiking. I know that other folks who have these issues figure it out. I am just praying that my team and I can figure out a plan for mine.

May and another anniversary is just around the corner. I’m praying and planning for our next hike.




March 13, 2016

Your Child’s Journey

It is an amazing blessing to watch your children’s talents and interests blossom and grow right before your eyes. It doesn’t matter if they’re three, thirteen, or thirty-three.

My son, Josh, has penned a trilogy entitled Camelot Fallen…Rise, Reign, and Fall (due out by the end of the year). (The first two are already available on Amazon.com.) It is based on the author’s interpretation of the life of King Arthur. The telling of a good story is when it plays like a movie in your mind’s eye. The cinematic imagery Josh paints throughout the series is captivating. The story, compelling.

The author, this man, was a little boy…just yesterday. He loved books. All kinds of books. As a toddler, he would sit in his little rocker listening to cassette tapes of his grandfather reading stories to him…for hours.

We watch our little ones choose this over that as they grow. We guide. But we don’t push. They each have a path, and we have the privilege as parents to equip them for the journey. Their journey.

Enjoy the journey.

“Train up a child in the way he should go,
And when he is old he will not depart from it.”
Proverbs 22:6




March 3, 2016

Everything You Ever Wanted to Know About Bone Marrow Biopsies…or Biopsy vs Aspiration?

Yesterday, I underwent my 30th bone marrow aspiration and biopsy. I always get both. Well, 29 out of 30 times I’ve had both. Only once did I have just an aspiration. I have wondered all this time why some patients only get the aspiration while others get the aspiration AND the more in depth biopsy. So while I was waiting yesterday, I decided to do some research. So hang on. This one might get deep!

According to www.mayoclinic.org, “A bone marrow biopsy (BMB) and a bone marrow aspiration (BMA) offer different, but complimentary, information about your bone marrow cells. The two procedures are usually performed together.”

Aspirations are a sampling of the liquid portion of the marrow and are primarily utilized for cytologic assessment, cell count, cytogenetics, molecular studies, microbiologic cultures, immunochemistry and flow cytometry. The doctor/technician makes a small incision and inserts a hollow needle through the bone into the marrow. There is brief sharp pain or stinging. Several samples may be taken. The aspirate is the sample of choice for studying and classifying the nucleated blood cells of the bone marrow (eg. ratio of white to red blood cells).

Biopsies, on the other hand, allow evaluation of the marrow’s overall cellularity, detection of focal lesions, and determination of the extent of infiltration by various pathologic entities…by removing a small piece of intact solid bone marrow tissue (0.75 x 0.06 in or 2 x 0.16 cm). The bone marrow is where blood cells are made. The doctor/technician uses a larger needle to withdraw a sample of solid bone marrow tissue. The biopsy needle is specifically designed to collect a core (cylindrical) of bone marrow. There is an strong aching, tugging sensation. The biopsy of bone marrow shows the intact tissue, so that the structure of the fat cells, lymphocytes, plasma cells, fibrous connective tissue cells, and their relationships to each other, can be seen.

Most people are only given a local anesthetic to numb the site and reduce the pain. It is still a procedure, much like childbirth, where slow deep breathing proves very beneficial. For a small percentage, complete sedation may be required. In either case, the BMB or BMA is usually performed in the hipbone (posterior iliac crest). Notes are kept as to which side, right or left, was used and the alternate side will be utilized during the next exam. Scar tissue can build up which increases difficulty and pain during the procedure.

Pressure is applied to stop the bleeding and secure bandaging is required to be left on and dry for forty-eight hours. Test results usually take up to two weeks.

Now, for the reason why some get one and others get both…. Patients with Myelomas, CLL, and Lymphomas need to have BOTH the BMA and the BMB. Patients with other cancers and issues can get their answers met with just the BMA.

I don’t know about you, but I have been wondering about that for quite a while. And now we know…and knowing’s half the battle!

You’re welcome! ☺


February 24, 2016

It’s Not About Me!

Last week I took Dixie to the vet for her annual vaccinations and a new vet was on rotation. We took the opportunity to get to know each other a bit, and as is typical, we ended up talking about our kids. His were considerably younger than mine, as in still teenagers. He was quite proud of his daughter’s achievements in cheer competition but was stressed, reasonably so, about a recent injury that had taken her out of competition for a while. I am not familiar about how the cheer thing works, but obviously you move from organization to organization as you get better and better over the years. She was at the top of her game! And after ten years of competing, this was her first injury…which might actually cost her team the top honors. It all seemed quite stressful for a fourteen year old!

When it was my turn to talk, I told him about my great niece and how she had opted out of drill team after a couple of years and went strictly with theater because there had simply been too much DRAMA in drill team!! Less drama in theater. Go figure!! She is having a blast!

I then told him about when my son had been a teenager, he had played football throughout junior and senior high school. Until the summer before his senior year when he told us that he wanted to quit football his VARSITY YEAR in order to be in theater the full year instead of just being able to be in the spring musical. I was hyperventilating! We were a football family!! His uncle had played in college and professionally. I had watched football since I was nine! I had a secret dream of being the first woman professional coach! (Has that been done and I just missed it?) But I took a deep breath and remembered that IT’S NOT ABOUT ME!! He had no plans to play ball in college, nor was he really exceptional. Just average. He had always completely enjoyed it and I enjoyed watching him. But he was done. He didn’t need this. His love was music and the arts. He wanted to be a Singing Cadet in college, not a football player! So I fully supported his decision (after accepting that I had ALREADY seen him suit up for the last time!), and he ended up getting a major role in every production during his senior year. He had a blast!! And I learned, or remembered, a very important lesson. It’s not about me!

Parents, that is a lesson that is important to learn right after you bring them home from the hospital! Perhaps before you ever leave!! It is one that you will need to embrace thousands of times throughout the lives of your children. As I am typing this, I am smiling at how my children are now experiencing this with their own. Even still, sometimes we need to be reminded.



“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11

“Train up a child in the way he should go:
and when he is old, he will not depart from it.”
Proverbs 22:6

“You, however, continue in the things you have learned and become convinced of, knowing from whom you have learned them, and that from childhood you have known the sacred writings which are able to give you the wisdom that leads to salvation through faith which is in Christ Jesus.
All Scripture is inspired by God and profitable for teaching, for reproof,
for correction, for training in righteousness; so that the man of God may be adequate, equipped for every good work.”
2 Timothy 3:14-17