Wednesday Afternoon, 6/29

Jadon went into surgery yesterday at about 3:30PM.  The surgeons removed additional tissue from the nasal cavity that showed signs of fungal growth.  The surgeon was 80% sure the nasal septum would have to be removed in a later surgery.  He has remained asleep since the surgery but does respond to audible stimulus.  His vitals continue in a normal range and he hasn’t needed additional blood today.  The surgeons also examined the areas of discolored skin that continues to be observed on his side, back and rectal areas.  Their conclusions were not recorded into the surgery notes or provided to the family first hand.  Lab analysis of samples removed from the interior wall of the abdominal cavity have not been completed.  His overall physical appearance is gradually returning to normal however he remains in a very fragile and weakened condition.

Monday Morning 6/27

The past two nights were quiet and uneventful for Jadon.  His vitals continue to be well within normal values.  His medications have not been changed including periodic pain medication which keeps him sleeping most of the time.  He continues to receive nutrition through the IV and has a ventilator installed so interfacing with him is limited to yes/no questions.  The chemotherapy treatment is suspended at this time pending more recovery time.  The Ear, Nose and Throat doctor has him scheduled for surgery tomorrow to verify no new fungal growth in the nasal area and remove any that is still observed.

Friday Morning 6/24

Due to a lab error, it seems the previous report of Jadon being in remission was erroneous.  The parents were informed yesterday that Jadon would need to repeat the Induction phase of treatment.  The ICU doctor stated Jadon would not survive the treatment at this time due to his weakened state.  He is also showing signs of retaining fluid in his abdominal cavity.  The general consensus of the radiologists reading the abdominal CAT scan concluded the fluid was most likely blood.  The source of the blood is not yet known.  The fluid has not been tested to confirm this however.  Jadon required three units of blood yesterday which may support their theory.  His situation is being closely watched but there doesn’t seem to be a treatment plan in place that he can survive.  I will report new information as it is reported to me.

Wednesday Morning 6/22

His organs, including his appendix, appear to be healthy.  The spleen still has some issues but is not considered to be urgent at this time.  The ear, nose and throat doctor reported the remaining fungus was successfully exhumed with removal of the nasal septum not required.  He will be reexamined in about week to monitor his healing.  The leukemia treatment is on schedule with the completion of the Induction phase.  The Intensification or Consolidation phase will begin in about 10 days.  His bone marrow examination revealed no leukemic cells that could be observed under a microscope.  Samples have been sent to a lab for further analysis.  This means Jadon is on target with his leukemia treatment effectively being in remission.

His general condition still remains classified as critical.  The surgery in his sinus areas requires that he remain sedated.  He still has a long recovery time ahead but with your prayers he should see a slow, steady recovery.  Visitation is still discouraged though.

Monday Morning 6/20

Edit Monday Morning, 1:10PM.

A CT scan was run on Jadon’s head to verify the progression of the fungal sinusitis and his abdomen without contrast to try and understand the reason for the enflamed liver, spleen and pancreas.  The result of the CT scan performed on his head verified the fungus had not progressed to the orbital or brain.  It also showed a spot on his left kidney and issues with the spleen.  Additional detail was not provided.

New information provided from the surgeon is saying Jadon has Typhlitis.  Typhlitis is a potentially life-threatening necrotizing inflammation of the cecum and colon that was recognized initially as a complication
of childhood leukemia but is now known to occur in both adults and children with a variety of hematologic and solid malignancies, in patients with acquired immunodeficiency syndrome, and as a complication of bone marrow transplantation (BMT).  The early use of broad-spectrum antibiotics and bowel rest should control this complication in most patients.

Currently Jadon is scheduled for additional surgery on Wednesday, June 22 to remove the residual fungus identified through the CT scan.  It is not known at this time whether removal of his nasal septum will take place.  The oncologist is also going to take a bone marrow sample while Jadon is under sedation for the surgery and the abdominal cavity will be scoped.  The chemotherapy treatment is currently on hold.

Please keep Jadon in your prayers.  He needs the healing hand of his savior more than ever.

Saturday Night 6/18

We had been planning to visit Jadon this evening thinking this was another routine day but our plans were changed by a phone call. We were called in tonight due to an emergency surgery which took place at about 6PM.  Jadon had complained of pain in his nose two days ago which was treated with Vaseline thinking it was just minor dryness in the nasal cavity due to the constant flow of oxygen.  Today he related there was something in his throat restricting his air passage.  An ear, nose and throat doctor was brought in and examined him which prompted the surgery.  Jadon was diagnosed with acute fungal sinusitis that later was determined to be a nonaggressive type.  These infections can rapidly advance to the vital structures near the sinuses.  Immunocompromised patients are treated with a combination of surgery and medication.  In Jadon’s case the fungus had not spread to the orbital however he will be examined again on Thursday to determine if additional surgery is warranted.  While the origin of the fungus is not known the timeline suggests his infection occurred during his stay at the PICU.  Due to Jadon’s fragile condition the family is not allowing visitation by anyone outside of family and clergy.

 

Please keep Jadon in your prayers.

Thursday Night 6/16

Again, Kathy and I were greeted with those big beautiful brown eyes and a wave.  The abdominal cavity drain tube was removed yesterday. Jadon's vitals continue to be within normal limits. No differences were observed in the ultrasound of his abdominal area today from previous examinations. Jadon finally got to have a small amount of a slushy today.  He may also be allowed to eat today. He still is unable to verbalize his wants/comments. He has been using a small white board and a computer to assist in that endeavor.  There still needs to be some interpretation skills involved as he is very weak which shows in his penmanship and typing skills.  His sense of humor is beginning to show indicating he is starting to feel better.  Physical therapy is being administered to help with his muscle tone.  His pain medication is being tapered off which allows more interaction time.  He still has some skin issues that require daily attention on his back, thigh and pelvic areas.  His next round of chemotherapy has been postponed to next week to allow some recovery time.  He will remain in the PICU for a few more days if all continues to go well.

God bless everyone for their support and prayers.

Tuesday Morning 6/14

Jadon's overall well-being is improving everyday in small steps.  His vitals are maintaining within a normal range.  He still needs to be either on the BiPAP machine periodically or oxygen through the nose to maintain his target blood oxygen level.  He is receiving periodic treatments with a machine that assists the patient with coughing which helps clear the lungs of any mucus and liquid.  He received his last scheduled Induction phase treatment on Sunday.  He will be tested on Friday for the presence of leukemic cells in his bone marrow and spinal fluid.  The expected level of leukemic cells should be between zero and .1%.  The second phase of treatment will begin in about 8 days if all goes well.  His hair has thinned considerably as expected but his overall appearance is returning to normal.  He is still being fed nutritional supplements through his nose.  The doctors want to confirm his digestive tract is functioning before allowing solid food intake. His extended time in the PICU has resulted in a contact ulcer on his back.  He is being slowly weaned from the pain medications which should allow more interaction time.  He is still very weak and has difficulty verbalizing his wants/comments.  He will require physical therapy when he is transferred from the PICU which could happen next week.  Grandpa is anxious to bring him that slushy he requested last week.

Saturday Night 6/11

Jadon was able to breath without the aid of the BiPAP machine this afternoon.  X-ray shows his left lung has cleared.  His vitals are near normal but tend to fluctuate as some medications are administered.  He is still unable to talk but can answer yes/no questions.  More chemotherapy is scheduled tomorrow.  He is being fed a non-dairy version of a nutritional supplement to verify digestional tract functionality before being allowed to eat.  His liver, spleen and gallbladder are still enlarged and, as a result,are only marginally functioning.  As a result, some areas of his skin have a faint yellow tint.  The hope is they will continue to heal and function normally once he begins to eat again.   He is also receiving a small dose of insulin due to his high glucose levels.  This is expected to be temporary though.  His overall well-being is still very fragile and weak.  He is showing improvements in very small steps.

Father Novak paid him a visit this afternoon to check his progress and prayed with the family.

Please keep Jadon in your prayers as he travels down this difficult path.

Friday Morning 6/10

Jadon’s vital signs are almost on target, however, he continues to have breathing issues.  His lung capacity is diminished due to an enlarged liver and spleen crowding his lungs.  The surgeons continue to monitor this situation but due to his fragile, weak condition nothing is planned at this time.  As a result, he is breathing with the aid of a BiPAP (bi-level positive airway pressure) Ventilator.  The CPAP mask covers his nose and mouth and provides pressurized air.  He needs periodic suction in the trachea to remove fluid that collects in the back of his throat and restricts his airway.  As of this morning, he has fluid on both lungs that will be discussed by the doctors during their regular rounds.

Wednesday Night

When I entered the room this evening I was greeted by those big beautiful brown eyes and a wave.  The ventilator was removed this afternoon. Jadon is breathing on his own but continues to receive oxygen. While his vocal cords are inoperative after the ventilator he has no problem trying to articulate his comments and desires for a slushy. He will have to wait for the slushy until he is cleared by the doctor though.  But that doesn’t keep him from trying to negotiate with the nurse where after she informed him it would not be today he retorted with “Oh, man”. His next chemotherapy will be this weekend. He was receiving PediaSure through his nose this evening.  The surgeons continue to closely monitor his bodily functions another day. While he is slowly improving his condition remains very serious. His fragility is still very apparent.

Tuesday Night

Chemotherapy was administered at 2:30AM. The surgeons examined Jadon this morning to determine if surgery was necessary to correct an enflamed Gallbladder and Spleen. No surgery is planned at this time but the situation will be closely watched. The oncologists are very optimistic about his treatment at this time. The bone marrow test showed less than 3% leukemic cells. This number is consistent with the goal of the patient effectively being in remission at the conclusion of the Induction phase of treatment. Jadon's Induction phase is due to conclude on June 17. The cytogenetics report was also very favorable which allows the oncologist to administer less chemotherapy and lowers his risk factor slightly. He is showing more and more periods of lucidity answering yes and no questions about his condition. Also he is starting to move his limbs from his week long sleep. He is still receiving pain medication as required. The ventilator is due to be removed tomorrow which will greatly increase his comfort level.

We want to thank everyone for their continued support and prayers.

Monday Evening 6/6

The bone marrow and chemo treatment scheduled for today was postponed until Tuesday.  Ultrasound of his abdomen was performed to try and understand why the infection is not allowing his body to dissipate excess fluids properly from the abdominal cavity.  His respiration has improved to the point the ventilator is not required but the decision was made to leave it installed until the chemotherapy has been administered.  He remains sedated but does have short periods when he can interact giving us encouragement.

Each day that passes we are informed of Jadon being added to more prayer lists.  Once again, we want to thank everyone for their caring compassion.

Sunday Morning

Jadon continues to show improvement in small steps.  Blood pressure medication has been removed resulting in his vitals returning to at or near normal levels.  He is still sedated and receiving pain medication due to skin blistering in his pelvic and back areas.  He is also receiving PediaSure through the nose to verify proper functioning of the digestive tract.  His Saturday night was quiet and uneventful.

We have had requests for Jadon's age and birthdate.  He is 13 years old and was born 4/9/1998.

We also continue to receive reports of Jadon being added to more prayer lists across the country.  The family thanks everyone for their support.

Friday Evening Update

The chemo treatment scheduled for today did not take place.  Jadon was showing signs of jaundice this morning which has delayed the next leukemia treatment until Monday (6/6) or Tuesday (6/7).  We are encouraged that Jadon's vital signs are still showing near normal but he continues to be sedated due to the level of pain.

We continue to receive information Jadon has been added to more prayer lists across the state.  The family thanks everyone for their prayers and support through this difficult time.

The Beginning of a Long Journey

As we travel down life's road sometimes we encounter events that have a profound effect on how we live our own lives.  This is one of those events for me.  As Jadon's grandfather, I have known him since his first day of life and have come to know him not only as a grandson but a good friend as well.  As most of you know, to know him is to love him.  Due to the events of the past week, it has become apparent that he is loved by many people who love and care for him as well.  As we all look for things that can help the need for disseminating information has become my contribution to him.

Jadon was diagnosed with Acute lymphocytic leukemia (ALL) on May 18, 2011.

• is also called lymphoblastic or lymphoid leukemia
• accounts for about 80 percent of childhood leukemias
• can occur over a short period of days to weeks
• cancer comes from a white blood cell called a lymphocyte

 ~What are the symptoms of ALL?
ALL can cause a variety of symptoms in children. Keep in mind that the symptoms of ALL may resemble other, more common conditions or medical problems. Always consult your child's physician for a diagnosis.
Because leukemia is a cancer of the bone marrow, the initial symptoms are often related to abnormal bone marrow function. The bone marrow is responsible for producing normal blood cells, including the red blood cells, white blood cells and platelets. While your child may experience symptoms differently, some of the most common include:

• anemia – When your child’s bone marrow is too crowded for red blood cells to be produced, anemia is present. Your child may appear tired, pale, and may breathe faster to compensate for the decrease in his cells’ ability to carry oxygen. A blood count will show fewer than normal red blood cells.
   
• bone and joint pain – Your child may experience pain in his bones and joints. This pain is usually a result of the bone marrow being overcrowded and "full." Many children experience lower back pain or limp as a result of bone pain.
   
• bruising or petechiae– When the marrow is too crowded to allow platelets to be produced, your child may bruise more easily. You might notice petechiae, or tiny red dots, on the skin if your child has a low number of platelets. These are very small blood vessels that have "leaked" or bled. While these symptoms pose no immediate risk, they do indicate the possibility of a more serious underlying problem. A blood count will show an abnormally low number of platelets.
   
• fever– Many children with ALL have fevers that are not related to a specific infection.
   
• recurrent infections - Although there may be an unusually high number of white blood cells on your child’s blood count, these leukemic white blood cells are immature and don’t fight infection. Your child may have had several viral or bacterial infections over the past few weeks, and may show symptoms of an infection such as a fever, runny nose and cough.
   
• abdominal pain – Stomach aches may also be a symptom of leukemia. Leukemia cells can collect in your child’s kidney, liver and spleen, causing these organs to become enlarged. Pain in the abdomen may cause your child lose his appetite and lose weight.
   
• swollen lymph nodes - Your child may also have swelling in the lymph nodes under the arms, in the groin, chest and in the neck. Leukemia cells may collect in the nodes, causing swelling.
   
• dyspnea (difficulty breathing) - In some cases of ALL, leukemia cells tend to clump together in the middle of the chest (around the thymus). This may lead to pain and difficulty breathing. Wheezing, coughing and/or problems breathing requires immediate medical attention.

What are the stages of leukemia treatment?
Your child’s pediatric oncologist will work with pathologists and other specialists to determine your child’s specific type of ALL. They will also do tests after the first few weeks of treatment to determine how well your child’s leukemia has responded to treatment so far. Based on the specific type of ALL and the results of tests during the first weeks of treatment, your child’s physician will recommend a specific treatment regimen. In general, phases in the treatment of leukemia include:
1. Induction
Induction is the first phase of treatment. It consists of many chemotherapy medicines and usually lasts for about four weeks. Your child may need to be hospitalized for some or all of this phase.

• A bone marrow test is done at the end of the induction phase to determine if there are still leukemia cells visible under the microscope or not.
   
• The goal of this phase is to achieve remission. This means leukemia cells are no longer visible under the microscope when examining either the bone marrow or blood.
   
• Even when remission is achieved, leukemia is still present in the body, which is why further therapy is necessary.

2. Intensification or consolidation
Intensification or consolidation is continued treatment with chemotherapy to kill leukemia cells. This phase includes multiple chemotherapy drugs given in the hospital, in the clinic and at home. In addition to chemotherapy given by mouth, in the vein and in the muscle, there will be regularly scheduled times that lumbar punctures are performed to give chemotherapy into the spinal fluid. Some children may also receive radiation therapy to the brain during this phase.
3. Maintenance or continuation
The goal of this stage is to eradicate all leukemia from the body.

• Usually, less intensive chemotherapy is used, much of which can be given at home.
• This phase can last months to several years.
• Your child will come to clinic regularly to see the doctors and nurses there during this stage

The above information are excerpts taken from the Children's Hospital of Boston site provided below.

http://www.childrenshospital.org/az/Site759/mainpageS759P1.html



Current status:

Jadon is currently in the Intensive Care Unit at the OU Children's Hospital undergoing treatment for a bacterial infection.  Due to his compromised immune system, the infection almost took him from us last Sunday.  Through the efforts of Father Novak and the ICU staff he is showing improvement everyday.

Jadon is currently in the Induction phase of treatment which is due to resume today.  Jadon will remain at the Hospital through the remainder of the Induction phase.  Because of the possibility of passing infection, the family is no longer permitting casual visitation.  Contact must be restricted to family, clergy and the medical staff.  Thank you for your understanding.

Thank You:

We would like to thank the staff at the OU Children's Hospital PICU and the nurses on the tenth floor for their outstanding service and continued support.  Father Novak, who has been with us from the start, is providing much needed spiritual support to Jadon and family.  The outpouring of support from the church, school and friends remind us of the number of lives that Jadon has touched.  God knows he has touched mine.

With everyone's help, I will once again be able to watch James Bond movies, play chess (which I am not very good at) and enjoy his sense of humor.  Jadon loves his family, church, school, reading, playing video games and playing basketball.

I will continue to post updates as they become known.

PRAY 4 J