Stand Firm

8-1-19 +773 days

Thank you so much for praying for Ella Joy as we had a full day of procedures and appointments at Luries.

We started with an echocardiogram.  It took about an hour, but unfortunately, for some reason, Ella Joy was extremely uncomfortable.

Next was the electrocardiogram (EKG/ECG) which was quick and painless.

We then went to radiology where Ella Joy had to get a bone densitometry, also called dual-energy x-ray absorptiometry, DEXA or DXA, which uses a very small dose of ionizing radiation to produce pictures of the inside of the body (usually the lower (or lumbar) spine and hips) to measure bone loss.

Then, our next appointment, we got to meet Ella Joy’s APN for her STARR clinic.  Her oncologist was not available, but hopefully we will get to meet her at our next visit.  Some of the concerns that our APN brought up was that Ella Joy still has a high ferritin level (because of all of her blood transplants).  We praise God because although her iron levels are still too high, they have naturally decreased without having phlebotomies from the 600’s to 376.  We are aiming for 11-320.  Please continue to pray with us that Ella Joy can naturally get to this lower range soon. Another concern was her vitamin d level, which was another lab we took for her.  Graft versus host disease was also mentioned because the sun can cause GVHD to flare up on her skin.  We need to continue to be extra careful to give her sunscreen and shade when we are outside and in the sun.

We also had an appointment to meet Ella Joy’s endocrinologist. She brought up some huge concerns.  Ella Joy had the maximum amount of radiation because she had 90% cancer blasts in her bone marrow that had spread to her spinal fluid. Therefore, she underwent total body irradiation as well as cranial radiation.  Radiation given to the thyroid gland can reduce its production of hormones.  Our endocrinologist told us we need to constantly check Ella Joy’s neck because she is at high risk to develop thyroid cancer because of all her radiation therapy.  Please pray with us that God would protect Ella Joy’s thyroid gland, and that she would not develop any secondary cancers.  Our endocrinologist went on to say that as Ella Joy gets older, her chances of developing thyroid cancer gets higher.  I had to have her repeat that statement as it was alarming to hear.  We need to be constantly screening Ella Joy’s pituitary glands.  Once again, because of all thetotal body irradiation and cranial radiation, it can cause the glands that control growth to malfunction. As a result, the pituitary gland may not make enough GH, resulting in growth hormone deficiency.  We will never know how much taller Ella Joy would have been.  Another concern was Primary Ovarian Insufficiency which occurs when the ovaries are not working normally. The hormones that usually are naturally made by the ovaries (estrogen, progesterone, and testosterone) are no longer being produced in normal amounts, and the ovaries don’t release eggs (ovulate) or release them just once in a while. In other words, Ella Joy’s brain is trying to go into puberty, but her ovaries are not producing estrogen.  It is very likely she will need hormone replacement therapy (HRT) in the form of hormone patches (transdermal estrogen) and possibly pills.  Please pray with us that God would show us another miracle.  Although the odds are against her, please pray that she would be able to develop naturally without needing all these medical patches and pills.  We know Ella Joy has been hit with just about every chemotherapy including cyclophosphamide which is extremely potent at inducing ovarian failure.  Although every oncologist has told us she most likely will not be able to have children, we believe in a God who is greater, and all things are possible in Him! “With man this is impossible, but with God all things are possible.” – Matthew 19:26.  Please pray this verse with us!

Another area of concern was Ella Joy’s neurocognitive skills.  With all the high dose chemotherapy and radiation after relapse, as well as all the initial chemotherapy she received for over 2 years when first diagnosed, they told me it was very likely for children like Ella Joy to be lacking in executive skills, prioritizing information, and having a decreased speed in learning.  This can happen years down the line.  Please pray with us that God would continue to protect Ella Joy’s brain.  Whether it’s reading, memorizing more digits of pi, playing chess or Monopoly Deal or Five Crowns : ) that she would challenge herself everyday to make connections and learn new things.

Our final appointment was Ella Joy’s pulmonary function test.  It was difficult (even I would have had a hard time doing all of the breathing techniques and tests), but she was a rock star and tried her best.

The good news is that when all the labs come back and if everything appears normal, we will not have to go back to the STARR clinic for another year!  Praise the Lord!  This is huge for us, as about half of Ella Joy’s life has been inpatient, infusion, ER or going to hematology/oncology clinic visits for chemotherapy, spinal taps, bone marrow aspirates, and more procedures.

Our hearts are so full of thankfulness for friends and family who never give up in praying for Ella Joy.  We know we have so many prayer warriors who have stood with us in prayer as Ella Joy fought for her life battling cancer twice.

Finally, we wanted to leave you with this verse, as this photo depicts our family standing together, please continue standing firm with us in prayer …

“Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.” – 1 Corinthians 15:58