Saturday Morning, 7/30

Jadon’s Wake and Mass of Christian Burial will both take place at St. John’s Nepomuk Catholic Church in Yukon, Oklahoma.  His Wake is scheduled for Monday, August 1 at 7PM.  The Mass of Christian Burial is scheduled for Tuesday, August 2 at 10AM.  The church and funeral home details are provided below respectively.

St. John Nepomuk Catholic Church
600 Garth Brooks Blvd.
Yukon, OK 73099
405-354-2743

Yanda and Son Funeral Home
1500 W. Vandament
Yukon, OK 73085
405-350-7101

The family would like to thank everyone for their generous acts of compassion, kindness and prayers through this long and difficult ordeal.  The family would also like to thank everyone who participated in the Walk for Jadon held at the Yukon High School gym tonight.  A very special thank you goes out to Father Novak, Deacon Dan Lombardi, the school and church families at St. John’s Nepomuk.  A very, very special thank you to the dedicated medical staff at OU Children’s Hospital who showed their caring compassion for Jadon through the daily routines of treatments, patient maintenance and unending family questions.

In closing, I have to admit my personal knowledge of leukemia was limited to St. Jude advertising showing the bald kids that apparently had a much different outcome.  Leukemia had never touched anyone in our family before.   After witnessing the terrible ordeal first hand that Jadon endured this experience has given me not only an elementary baseline of knowledge about the disease but it allowed me to see the strength of Jadon’s character that was never apparent to me before during our casual interactions.  As some of you may already know, the treatment for the disease is almost as terrible as the disease itself.  I witnessed Jadon taking every injection with only a grimace knowing he was being subjected to extremely high levels of pain.  Not to mention the numerous negative side effects that would accompany each treatment.  Even though the chemotherapy burned through his body like hot coals his will to fight never waned.   Although Jadon ultimately lost his battle to the disease, his tenacity to beat this disease was apparent all the way to the end.  He truly exhibited the resolve of a hero.  As his grandfather I hereby award Jadon Conger the highest award for bravery and conspicuous gallantry while engaged in action against an unseen enemy – Leukemia.  Good bye Jadon and God Bless you for eternity for you are my hero never to be forgotten.

Thursday Night 7/28

This morning the parents made the difficult decision to remove life support from Jadon’s body and hope for a miracle.  The dosage level of the blood pressure medications were reduced by half, the dialysis machine was removed and the trach was disconnected.  Jadon’s blood pressure tapered down to a systolic value in the 20s with shallow respiration.  Jadon maintained this level for about two hours before the life left his body at 1:50PM this afternoon.  He died in the presence of mom, dad, Father Novak and Deacon Dan Lombardi.

Today I lost my grandson, friend, favorite chess opponent, kite flying buddy and James Bond movie buddy.  Those big beautiful brown eyes will only be available to see through the many photographs recorded over the years.  Admittedly a poor substitute for the real thing.  The photos cannot let me hear his laughter, sense of humor, see any more soccer or basketball games.  I won’t get to see him walk across the stage to receive his diploma and grow into the man I know I would have been proud.   Instead I have a large hole in my heart that will never heal.  However everytime I watch a James Bond movie he will be sitting right next to me and won’t complain when I eat all the popcorn

A wake for Jadon is scheduled for Monday evening with a memorial service for Tuesday morning at St. John’s Nepomuk Catholic Church in Yukon.  The times have not been set at this time but will be provided in my next and final blog.

Thursday Morning 7/28

Jadon’s blood pressure continues to be an issue even with three medications being administered.  He is regularly receiving blood products to maintain a nominal blood count.  Visual observations reveal his nasal debridement site has resumed  bleeding as evidenced by the blood in his mouth.  His lower abdomen is distended and his breathing has become labored.  He was not on the dialysis machine when we arrived last night but the attending doctor was going to reinstate it due to the excessive fluid retention and blood chemistry levels.  The dialysis machine was reinstalled without incident at the parents request.  The chemotherapy will not be resumed due to his weakened state.  The attending doctor has recommended his DNR be reinstated.  Jadon’s prognosis remains grim.

The St. John church deacon was with us most of the evening.  We want to thank everyone for their continued thoughts and prayers.

Tuesday Night 7/26

Jadon is receiving an additional blood pressure medication (vasopressin) at the direction of the new attending physician.  This brings his total number of BP medications back to three although it will be at a lower dosage level than before.   His systolic BP has been maintaining in the 80s with the addition of the vasopressin.  The oncologists have elected to begin administering chemotherapy tomorrow to prevent the leukemia from returning at a more aggressive rate pending the family’s consent.   He remains on dialysis due to his nonexistent kidney function.  His toes and skin issues continue to improve.

Other activities today included two units of blood and his trach tube was replaced.

Thank you for keeping the prayers coming as Jadon is needing the healing hand of his Lord and Savior more than ever.

Monday Morning 7/25

Jadon has been maintaining nominal blood pressure levels for the last few days.  He remains on two medications; epinephrine and dopamine.  The epinephrine was increased slightly yesterday to ensure he maintains acceptable levels.  He also remains sedated which keeps him limited to head nods in response to verbal requests. Last nights observations revealed his skin color appeared more normal and the former rash/blistering sites on his abdomen were healing.  Both of his feet still exhibited a dark skin color but showed evidence of healing.  His kidney output is still almost nonexistent keeping him on dialysis.  I have not been made aware of any pending procedures this week.

 

Thank you for your continued thoughts and prayers.

Friday Afternoon 7/22

Jadon is definitely showing signs of improvement.  His need for the ventilator has been reduced.  The remaining two blood pressure medications have been reduced to half their original dosage.  His BP continues to maintain at the low end of nominal but is being closely monitored.  His sedation is also being reduced.  The CRRT dialysis is still required due to his low/nonexistent kidney output.  The ICU doctor is planning to install his feeding tube this afternoon.

The family wishes to thank everyone for their generous donations of blood in Jadon's name and for their continued prayers.

Tuesday Evening 7/19

Jadon's blood pressure continues to hold while the BP medications are slowly being reduced.  He is currently receiving only two medications.  It was reported the systolic pressure is maintaining around 100.  The darkened skin around his feet is still apparent but should respond to physical therapy once all the BP medications are removed.

To aid the family with incurred medical expenses St. John's is sponsoring T-shirt sales and a 'Pray 4 J' relay walk.  The email below will provide all the details and was just provided for posting this evening.

Subject: Pray 4 J FINAL t-shirt order
Reply-To: St. John Nepomuk Catholic School <dheard@sjnok.org>
St. John Friends and Family,

Tomorrow, Wednesday July 20th will be the FINAL day to place an order for the "Pray 4 J" t-shirts. The drawing of the shirt is attached. Cost is $15 for each shirt ($16 for XXL and $17 for XXXL)

Orders must be in by 2:00 pm and must be prepaid. No orders will be taken after Wednesday because we need to be able to get them in time for the walk on July 29th. At this time, these will NOT be available at back-to-school night.

Please e-mail me with your sizes and money can be dropped at the school between 9 am and 2 pm Wednesday.

You may still register for the "Pray 4 J" team for the Relay for Life walk on July 29th. That will take place at 7pm in the old Yukon High School Gym. As I get further information on the walk I will be sure to update everyone.

Click here to view the TEAM page for Pray 4 J
If the text above does not appear as a clickable link, you can visit the web address:
http://main.acsevents.org/site/TR?team_id=982207&pg=team&fr_id=32258&fl=en_US&et=9IVkB9NvrP9KuDojUxL0tg..&s_tafId=881047


Thanks to everyone for your continued support of Jadon and the Conger family.

Denise Heard

Monday Morning 7/18

Jadon’s blood pressure continues to maintain a marginal level but is now requiring four medications.  The doctors have informed the family that the level of blood pressure medications cannot be increased without causing damage to Jadon’s cardio system.  These medications help the heart maintain blood pressure but blood flow to his extremities is minimal.  As a result, the skin tone in his hands and feet have appeared to darken.  Messaging of these areas seems to temporarily relieve this condition.   He has reached the end of what is medically possible and must rely on his body to heal and fight ongoing infections.  He received three units of platelets last night.  His liver and kidney functions are minimal to nonexistent.  As a result, he remains on CRRT (Continuous Renal Replacement Therapy) dialysis.

Jadon is showing longer periods of being awake and lucid.  He still has a tube running to his stomach to remove the residual blood from his fungal debridement site in the nasal area.  This tube prevents him from talking but he does attempt to form words which can be understood most of the time.  The Jadon we all know and love is still with us.  His recovery is now in the hands of our lord and savior.

Addendum to Monday Morning 7/18, 6:25PM
The skin darkening that was apparent last night is more visually pronounced this morning in both feet extending up the ankle.  The cardio physician examined Jadon this morning performing an ECG (Electro Cardiogram) which showed evidence of liquid surrounding the heart.  They returned this afternoon to remove the liquid observed during their first examination by inserting a needle into the chest cavity.  This was necessary to ensure the liquid was not interferring with the heart pumping action thus negatively effecting the blood pressure.  Further examination found nothing to remove.  He is currently being slowly removed from the norepinefrine which is causing the restricted blood flow to his extremeties.  This should restore the blood flow and improve the darkened skin appearance.  His blood pressure is being closely monitored during this process which showed a systolic pressure consistantly above 110 during the cardio doctor's examination/treatment.  The tube in his throat to remove blood draining from his nasal cavity was removed today as well as the packing in his sinuses.  While he his still unable to talk as time passes this condition should improve.

We are cautiously excited about these developments.  I will post any new developments as they become known.

Saturday Afternoon 7/16

As of yesterday, Jadon is in septic shock.  Jadon’s blood pressure is currently maintaining but is requiring dopamine, epinephrine and norepinephrine to maintain nominal levels.  Doctors could hear a slight lung obstruction that was determined to be two bacterial infections in his lungs.  An antibiotic IV drip was resumed.  Jadon is responding to questions.  His leukemia treatment is on indefinite hold pending his condition being upgraded from a high critical status.  ICU doctors have informed the family there is nothing additional that can be provided to aid in his recovery.  At this point in time his prognosis is grim.

Thursday Morning 7/14

Jadon completed the surgery without any complications.  The tracheostomy procedure was completed successfully which has done away with the breathing tube.  The dialysis machine had some initial issues but is functioning now.  He had to have blood pressure medication to keep his pressure up.  This is expected to be gradually reduced during the course of the day.

The walls of his room are decorated with all the get well cards received from classmates, friends, caring people and relatives.  He has his quilt from the Lutheran Church quilt ministry in Yukon.  I’m sure there are other items that I am not aware.  The family wishes to thank everyone for their continued caring support.

Jadon remains in critical status and has a long recovery road ahead.  Jadon has lost muscle mass from his long duration in the PICU (Pediatric Intensive Care Unit).  Between the efforts of the medical staff and all the spiritual help from everyone we are hoping his situation will improve dramatically in the coming weeks.

Wednesday Morning, 7/13

Jadon is scheduled for surgery today at 3:30PM today.  The surgeon will inspect the previous area of fungal sinusitis in the nasal cavity and determine the need for further debridement.  Also the tracheostomy will be performed.  This will allow the breathing tube to be removed and allow his vocal cords to recover.  An addendum will be posted as soon as the surgeon reports their findings.

His vitals are stable and within nominal ranges.  He continues to be on dialysis as his kidney output is marginal to nonexistent.  He is sedated and resting comfortably but remains in critical condition.

Sunday Night 7/10

Jadon's kidney output remains almost non-existent which keeps him on dialysis.  He was removed from dialysis yesterday for about eight hours to see if his kidneys would produce output but had to be reinstated.  He has been receiving steroids during the course of his recovery.  The steroid infusion was briefly removed by the doctors in an effort to allow his body to repair itself.  This caused his heart rate to fall to a point that required the nurse to bag him until his heart rate was restored to normal levels.  The steroid infusion was therefore subsequently restored by the oncology physician which appears to have stabilized his heart rate.  He is currently receiving dopamine to help stabilize his heart rate as well.

The ear, nose and throat doctor will examine him tomorrow to evaluate any future surgery options this week.  The tracheotomy will also be discussed at that time.

Jadon's status remains critical.  Your prayers are needed more than ever.

Wednesday Night 7/6

There are several developments to report from yesterday.

Jadon’s urinary output volume tapered off to minimal levels in spite of continuous IVs.  An ultrasound of the kidneys showed no observable anomalies.  Due to the decreased kidney output he had a CRRT (Continuous Renal Replacement Therapy) dialysis machine attached last night to which he responded well.  This type of dialysis machine remains attached to the patient for 24 hours a day until the kidneys recover and begin an acceptable level of output.

Jadon is still showing blood loss from his nose at the fungal debridement site.  Packing treated with antibiotics was re-installed into the nasal cavity and should promote clotting to reduce/stop the blood loss.  The blood that drains from his nose is continuously suctioned from his stomach.

His blood work revealed high levels of  electrolytes, potassium and white blood cells.  Microscope examination for the presence of Blasts (leukemia cells) revealed none could be found.  A bone marrow biopsy is required to determine the level of leukemia still present though.

He is also scheduled for surgery at the beginning of next week to verify the fungal debridement site in the nasal cavity and make the final determination on the tracheotomy.

Jadon is currently not coherent but is resting comfortably.  His vitals continue to show nominal levels. 

Father Novak prayed with Jadon and the family this afternoon.  We want to thank everyone for their continued support and prayers.

Sunday Night 7/3

Sorry for the long delay between posts but the last several days have been very much the same in that he is holding his own and showing signs of healing.  His vitals continue to indicate within normal ranges with mild fluctuations noted during drug infusions or during his repositioning.  He continues to receive pain medication which keeps him sleeping most of the time.  In order to aid in healing his skin issues and helping expel the residual fluid in his lungs the wound care nurses have begun turning him from side to side every two hours.  The dark area on his right side has lightened considerably as a result.  His nose remains packed due to the bleeding from the tissue that was removed last Wednesday.  This is apparently a good indication meaning dead/diseased tissue would not bleed. The need for additional surgery into his nose is being debated by the doctors.  Also being discussed is the possibility of performing a tracheostomy.  He has had a breathing tube installed for 15 days now.  Five days beyond what the doctors recommend at this facility.

 

The status of his leukemia is not known at this time.  There is currently no firm time set for recovery of a bone marrow sample.

 

Additional information will be posted as it becomes known.  Keep Jadon in your prayers.

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