Thursday, December 7, 2006

Two Days After Diagnosis

On the weekend of October 8th Joel experienced a fever that lasted several days. He returned to active play after this fever and was his normal self.

For the next four weeks this cycle continued. Each time our hope was that the fever was gone for good. When the fever returned on the fifth week we took Joel to our family physician. The doctor recommended an iron supplement due to the fact that his red blood count (hemoglobin) was low (approximately 9.7).

The fever returned again along with swelling around his eye. We went back to the doctor to check his blood count and it had dropped even lower. We were then referred to a hemotology specialist at the OU Med Center.

On our initial visit to the specialist, his blood count was back to a 9.2, which is still low (normal for a 3 yr old is at least 10.5). The specialist, due to the fact that all his other counts were within range, recommended that we give time for his blood to rise. He reasoned that the effects of an infection could have caused his bone marrow to temporarily stop production. He scheduled us for weekly blood count checks.

We then went seven days without a fever. We went back for the CBC (blood count check) and it was low again (7.7). He scheduled us back in two days. On the Wednesday before Thanksgiving we returned and his blood count was back to a 9.0. He was still low but he seemed to be making progress.

On Thanksgiving day the fever returned and his other eye swelled significantly, and so the next CBC on Monday the 27th was down again to 7.2. We went back on Wednesday the 29th and he was still at 7.

The fever returned again over Thursday/Friday and it was with great concern that we returned to the clinic on Monday 12/4. This time Cindy brought Joel's twin brother to the appointment so that Joel and Josiah could get cowboy boots on the way home.

It was with much heaviness that we received the report that Joel's hemoglobin count was 6.6. Joel has also developed some bulges on the top of his head. The specialist recommended that we check into the hospital immediately in order to pursue further testing. He also recommended an immediate blood transfusion to increase his blood count so that testing could start the next day.

On Tuesday Joel went through intense testing. His bone marrow was extracted on both sides of his hip. He was given a bone scan and a CAT scan. By Tuesday afternoon Dr. McNall, one of the Oncologists for OU Children's Hospital, shared with us that she was 90% sure that Joel has Neuroblastoma, a form of childhood cancer. We were devastated as she described the disease as a tumor that spreads throughout the body.

Based on the preliminary results of the testing she was rating Joel's case as a stage 4 Neuroblastoma.

On Wednesday after further testing, she confirmed that the tumors had spread into his bones and around his skull area. The tumors were not inside his skull, but were outside the skull pushing out.

The doctor recommended an agressive chemotherapy treatment program as the best chance of recovery for Joel. Without treatment, apart from the Lord's direct intervention, from the medical perspective Joel, according to the doctor, would die.

We chose to move ahead with chemotherapy with the hope that the Lord will use that means to save Joel's life. We know that ultimately our hope is in the Lord Jehovah to heal.

Today Joel received a port through a surgical operation so that he can receive the therapy without having to find veins each time. It was placed just under the skin. He also was given another bone scan and a biopsy was taken from one of his lymphnodes.

Joel has been a real trooper, for a three year old he has been a real soldier. It has been difficult, and there have been many tears that have been shed amongst our family, but we know that God is sovereign and that He is good, and so our trust is in Him.

We begin today a 15 week treatment schedule that will involve several stays in the hospital.
Please pray for:

. Mom and Dad to be strengthened by the Lord.
. All of Joel's brothers and sisters (12 in all) to have special grace.
. Joel's tumors to shrink.
. For Joel to have minimal side affects.
. That the Lord will strengthen his immune system.
. That the bad cells will be destroyed and that the good cells will survive and thrive.

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K.T. says peace said...

I am a friend of Suzanne and Matts....Our family will be praying for your family.God Bless You and yours.

Teena said...

Hi, I just found your site from a friend that shared about Joel. I want you to know we will be praying for Joel and your family.

We are a family with 6 children. Our youngest is 3. His name is Wesley.

May the Lord give you strength and give Joel strength as he goes through his treatments.

mom to 1/2 dozen