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Caleb, the Fighter

Caleb: The Fighter!

Important Links

Our Church: Cornerstone Assembly of God:
Night of Praise Ministry
Heart Matters
Useful Heart Resources
National Association for Victims of Transfusion-Acquired AIDS, Inc.
Our Former Church: Metro-East Christian Fellowship
Eternal Life
Open Gates International Inc.
Jesus House of Prayer

[Click Image to Enlarge]


I'm a Pointer to the Left Caleb Spring 2000








The Fire Fighter Christmas 99 I'm a Pointer to the Right

The Fireman

I'm a Pointer to the Left Caleb Winter 1999




4th of July 2000 I'm a Pointer to the Right

July 4th 2000
Caleb with his dad David

I'm a Pointer to the Left Caleb with his dad, David


Caleb with his mom, KathyI'm a Pointer to the Right

Caleb & Mommie Wedding Aug 2000
Caleb August 2000

I'm a Pointer to the Left Caleb August 2000




Big Pretzel Grin I'm a Pointer to the Right

Caleb with a Big Pretzel Grin
The Family

I'm a Pointer to the Left Ingersons August 2000





Cow Rider I'm a Pointer to the Right

Cow Rider
Patti and Caleb Christmas 1999

I'm a Pointer to the Left Patti & Caleb Christmas 1999


Ingerson children at
Marion Meadows Farm
July 2000I'm a Pointer to the Right

Sarah, Caleb, Andrew, Hannah Joy
Caleb and Papa

I'm a Pointer to the Left Papa and Caleb Winter 1999


I'm a Pointer to the Right

Caleb, Hannah Joy, Andrew and Sarah
Grandkids On Fire Truck

I'm a Pointer to the Left Taylor and Ingerson children at
Chad and Margo's wedding
Summer 1999

Ingerson children Spring 2000 I'm a Pointer to the Right

Caleb with Sara, Andrew and Hanna Joy
Caleb and Micah Oct 1999

I'm a Pointer to the Left Caleb and Micah Gregory Oct 1999





Caleb and Elma Simovich
Thanksgiving 1999 I'm a Pointer to the Right

Elma Simovich and Caleb Thanksgiving 1999


Caleb's Story & Diagram's
[Caleb's Story] [Caleb's Heart Diagram ] [Caleb's EA/TEF Diagram ]

Updates - 2000
[September10] [May 14] [April 6] [March 31] [February 12]

Updates - 1999
[December 25][November 20][November 9][November 5]
[November 1][October 30][September 15][August 7]
[July 8][June 23][May 23][May 13]

Miscellaneous Links
[Our Family News Letters]
[Our Guest Book]
[Congenital Heart Disease Web Ring]


A message from the Ingerson Family dated September 10, 2000

To all our family and friends,

Thank you very much for the love and support you've offered my son during his three and a half years. As our lives have been enriched by having this special child in our family, so our lives have been enriched by your friendship and love.

You may be interested in reading the kind words below poignantly phrased by the pastor of our former Metro East Christian Fellowship. To provide a picture of what occurred this afternoon:

Today, after a lovely time of worship and preaching with our new church home we enjoyed a church-wide picnic. Our new local church home is Cornerstone Assembly of God, Bowie Maryland, a church which took a difficult stand for our son in that they chose to invite us to enjoy full fellowship in the faceof a family who threatened to leave the church if they allowed our HIV positive son to remain in the 3 year old Sunday School class. During the picnic the Cornerstone worship team led us in several worship songs during which time the children were invited to come stand and "lead" us in worship at the front. As soon as Caleb noticed what his sisters had gone to do, he insisted on accompanying them to the front. Precious in our mind's eye will be the memory of seeing him standing with the other children in heavenly worship less than an hour before he left the earth for his heavenly home.

Less than an hour later, after playing on the playground equipment and watching the children play kickball, I was holding Caleb in my arms talking when he suddenly he reared back until his head was at my knees. While pulling him back up to me I surprisedly asked, "What are you doing fella?"When I saw his eyes, incredulity only kept me from immediately realizing he was dead. We suspect he experienced something like a sudden electrical arrymthia which caused his heart to go into immediate arrest.

Kathy and two others nearby began CPR to no avail. Despite two electric cardiac resuscitation attempts by the hospital staff at a local clinic ER, he never regained cardiac function.

It's bittersweet to know he died of heart failure in my arms..........and was immediately translated into the Savior's.....the arms of the Savior who's heart burst for him on the cross.

To all our loving family in Christ, we say, "Rejoice in the Lord; and again I say rejoice!"

Grace to you in Jesus,

Pastor Rich's words:
In a message dated 9/10/00 9:59:28 PM Eastern Daylight Time,
Subj: Re: Caleb Ingerson: March 4, 1997 - September 10, 2000
Date: 9/10/00 11:47:14 PM Eastern Daylight Time

"Precious in the sight of the Lord is the death of His saints."

Caleb, the Fighter, has finished his final battle. Early this evening at his home just outside Washington, D.C., Caleb Ingerson bravely faced the final enemy. He suffered what was apparently a massive heart attack at dinner time. His body went limp and his ferocious heart just stopped beating. There are scant details, but he was rushed to the hospital asmany of us here prayed for his brain not to be injured from oxygen deprivation.

We rejoice in the sure hope that this young warrior left this world of difficulty and entered into the sweet shalom and fellowship of the Lord.

It was Caleb of old who silenced the unbelieving Israelites when he said, "We should go up and take possession of the land, for we can certainly do it." Young Caleb has now gone up and taken possession of the land the Lord Jesushas prepared for him.

We sensitively grieve with Kathy and David and the children—although not as those who have no hope. We also rejoice that Caleb faces no more doctors and hospitals, shots and shunts, purple lips and GI tubes. No longer does this precious child struggle against the congenital complications he so courageously contended with, nor will he need to face the grim future that the Virus would have brought him.

No more fighting for the fighter—no more tears or sorrow or pain or death. Only the beautiful release of going home to the One who loves him even more than his family or myriad masses of admirers. Now he knows more than any of us who remain, and in his now-perfect mind and heart he celebrates the joy of the Lord for eternity.

Our hearts and our love go out to you, David and Kathy, Sarah, Andrew and Hannah Joy. You all served this child of God faithfully. He never lacked love, care and spiritual covering. May the Lord bless and keep you. Your friends at MECF.

Pastor Rich,

for all the flock.

We are accepting memorial donations. Make checks payable to Open Gates International, 1124 Broad Street, Collinsville, IL 62234, and designate it "Caleb Memorial". Donations will be equally distributed between the Congenital Heart Disease Research Program at the Pediatric Cardiology Department of the University of Michigan Medical Center and the Jesus House of Prayer in Jericho, Israel. Open Gates International is a humanitarian, 501C, not-for-profit organization recognized by the IRS.

In peace with Jesus!

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Update: Sunday, May 14 2000

HALLELUJAH! The Lord God Omnipotent Reigneth! We give thanks to God for his loving kindness that endures forever. Praise God for He fought the battle for us! (the surgeon did NOT have to cut on Caleb's heart muscle; the troublesome heptic vein was ligated beneath/outside the heart). As God fought the battle for Jehoshaphat, destroying Judah's enemies; so God fought the battle for Caleb. Contrarty to the ominous expectations the medical staff gave us, Thursday's surgical procedure was not only successful, but MUCH simpler than anticipated! Praise God! Thank you Jesus. Thank you to all who prayed. Pray also that MANY souls will be saved through the witness of this little child.

Caleb was taken off the respirator within four hours of surgery (a first for him). Much to his surprise, the surgeon was able to accomplish the objective without placing the child on the HEART-LUNG-BYPASS machine. The doctors were as absolutely amazed as we were!

Praise God and thanks again for praying. Surely our God loves us and answers prayer! May we all seek to pray to him daily for all our needs; especially our deep need of salvation in Him through Jesus Christ our Lord.

Again, thanks to all who are praying. May God richly bless you.

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Update: Thursday, April 6 2000

We now have a date for Caleb's fifth open-heart surgery, May 11th. Bless you for praying for our little Fighter! May God be exalted by everything that is done through this little boy. Continue to seek Jesus Christ our Lord and Savior.

God has led me to share the testimony of my son's victory over congenital heart failure as I've preached the gospel to the precious people of the Philippines (from April 2nd through the 14th). I've found them very concerned and touched by Caleb's story! Praise God for His mighty power as He glorifies Himself through the life of this little child.

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Update: Saturday, March 31 2000

Caleb has been quite blue since his last heart surgery. Today we found out why. It seems he has a vein attached to his heart which is spilling blood to the wrong side of the heart, consequently this blood is not being oxygenated. This is because the blood going to his heart from this vein goes directly to his ventricle (pumping chamber) and gets pumped back to his body, bypassing his lungs. Thus, surgery is required to rectify this erroneous circulation. We expect the operation to be scheduled the second week of May.

Regarding Caleb's HIV infection, his latest CD-4 (lymphocyte) count is 230, down from a high of 495. While this is not cause for alarm, it is not indicative of the ever "elusive" positive trend; however, we thank God the precious child has not experienced any subsequent "opportunistic" infections. Join us in praying he'll remains free of such infections until this next heart surgery in May.

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Update: Saturday, February 12th, 2000

Last week we took Caleb to see another specialist, a gastrointerologist. In response to his query as to why we were there to see him, I responded, "We don't have your name punched on our dance card." While he seemed only mildly entertained at my attempt to humor him, he was quite gracious and offered us some insight we'd not learned from anyone else. Consequently we've increased the child's daily caloric input by increasing the level at which we "pump" formula into his stomache at night. We are also going to have some GI tests conducted next week to help us try to rule out whether or not the repair from one of his past surgeries, his Thal Fundoplication, may have become "undone." All this investigation is because although Caleb has grown an inch taller [he's almost 3 feet tall now!], he has not gained any weight in over six months. :(

Now for the really good news.....while in St. Louis at the Children's hospital, where the gastrointerologist practices, we stopped in at Caleb's cardiologist to have his oxygen saturations checked. As we suspected based on "parent observed" increased energy level, his oxygen saturations are up approximately 5% from 65% to 70%! Praise God! Medically speaking, while this may not seem like much, to go from bad to slightly less bad, we feel it is like going from "not-so-good" to MUCH better. Praise God!

February 14th is the first annual National CHD Awareness Day! May the public gain a better understanding of that fact that heart defects are the most common birth defect and number one killer of babies. If even "minor" heart defects are included in the statistic, it's estimated 1 in 100 are born with heart defects. Obviously, the "risk" of a life-threatening heart defect such as Caleb's is must less prevalent; however, it is still a greater problem than most people realize. May we join forces and seek to better understand this serious issue and work to curb its impact on our children.

May the favor of the Lord Jesus Christ be upon you! Blessings. :)

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Update: Saturday, December 25th, 1999

Hallelujah Caleb's most recent blood tests [from Monday, Dec 13th] reveal a satisfying undetectable viral (HIV) load. This means that the 72 hours off his antiretroviral medications (HIV medicines) from just before, during, and after his most recent [November 2nd] heart surgery seems to have resulted in no ill effects. Praise God!

On the less than marvelous "front" the past six weeks have been VERY challenging. The child has been quite uncomfortable. We suspect it's due to his mild hypoxia (his oxygen level continues to hover around 65%). He's been complaining not only that his "eyes hurt," but also that he's "tired!" I'm nearly tired of hearing him exclaim, "I'm tired!" however, it's easy to be sympathetic when he sounds so pathetic! Hey...that's sounded poetic. Or did it sound eccentric? Ah well...We must keep our humour up don't you know?

Hallelujah, it's Christmas Day! Did you know there is more confirmatory historical data indicating the birth and crucifixion death of Christ Jesus than any other historical event of that time? It is a well documented fact that God's son took on human form being born of a virgin. The miracle of His virgin birth lends credibility to the Biblical record which clearly declares that He died to pay the penalty for our sins to purchase for us a place in heaven which He offers as a free gift. Won't you accept the gift the child of CHRISTmas is offering you? Eternal life. That's what He offers us. Check out my [Eternal life] link above and have a blessed CHRISTmas and New Year!

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Update: Saturday, November 20th, 1999

While we are generally pleased with Caleb's progress since his most recent surgery (Nov 2nd), his blood-oxygen saturations (sats) continue to hover around 65%. [Note: Approximately 100% sats are reasonable for a person with a normal heart.] Our goal for Caleb is for his sats to reach the range of 80 to 85%. Due to Caleb's current demonstrated lack of energy and mild irritability we decided to take him to see his local pediatric cardiologist.

We discussed with the doctor the possibility that Caleb's heart/circulatory system is having a difficult time adjusting to the new routing of his blood. We suspect the fenestration (an important release openning the surgeon placed) in Caleb's right atrial "baffle" during his Nov 2nd surgery could be allowing more blood than expected to "shunt" into his atrium from the inferior or superior vena cavas, hence not traversing his lungs prior to being pumped back to the body. This results in some of his blood being pumped back to his body before being oxygenated, hence reducing the oxygen-rich blood available throughout his body.

If his oxygen sats don't improve within two weeks, we'll place him on oxygen while sleeping at night....won't that be fun! He is NOT fond of having an oxygen cannula in his nose!

Although we are troubled that he has been refluxing and vomiting more lately, we expect it to be related to his traceoesophageal fistula versus heart.

Thanks again for praying for our little Fighter!

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Update: Tuesday, November 9th, 1999

Hallelujah! Thanks again to all those who are praying for our little Fighter, Caleb. Amazingly, he was released from the hospital yesterday. Now we are "watching" him at his maternal grandparents' home to be sure he is strong enough to endure the 500 mile drive home to O'Fallon, Illinois. Speaking of grandparents, we say a great big THANK YOU to both Caleb's maternal and paternal grandparents. My mother, Joan, as well as Kathy's parents, Donna and Gerald have been giving and giving and giving to my family during not only this, but each of Caleb's hospitalizations. Thanks Mom. Thanks Mom and Dad Marion.

On Sunday evening, we accidentally nearly pulled one of Caleb's two chest drainage tubes completely out of his chest. The evening On-call doctor came and pulled the tube the rest of the way out and stitched the thoracic openning closed so no undesirable air would be introduced into Caleb's chest. The doctor commented that the staff would likely have pulled the chest tubes one day sooner except that they could not believe that Caleb had only drained 14.5 ounces of fluid versus the normal two to three times that amount (which he normally drains after open-heart surgery).

The next day, Monday, we not only pulled the remaining chest tube, but also weened the child off supplemental oxygen and pulled his heart "pacer" wires. After he received a "discharge" echocardiogram the surgical clinical nurse practitioner, Louise, told me his tricuspid valve was not leaking at all! Praise God! That valve's leakage has been quite troublesome; hence, for it to be not leaking is fantastic! She also reminded me that Caleb's heart function is "not normal." "Not normal," she explained, "for anyone, Hypoplastic Left Heart Syndrome (HLHS) or not!" She further explained that Caleb's abnormal heart function amazes the doctors in that "incredibly" this child's unique [poor] heart function is "apparently" sufficient for him. Once again, we give God glory and thanks for a child who's heart continues to amaze us all, including the doctors!

Another exciting bit of news is that unlike prior to the surgery, Caleb's heart is not able to be put into an arrythmatic condition when a doctor pulses it with a mild electric charge. [Note, this information was obtained while conducting an electrical "test" which was accomplished in accordance with a medical "study" Caleb is enrolled in which should help surgeons understand how to better perform the required surgical procedures for future HLHS patients.]

People often ask us what God is teaching us during these "trials" pertaining to Caleb's medical needs. One lesson we are learning is that life is a gift from God. We ought to cherish and appreciate it. Our lives are very fragile and temporary. As the Psalmist wrote, "our lives are but a vapor." While we, and so many others, are appropriately exerting so much time and energy trying to help our son extend his life, we ought not to forget that in the grand scheme of things, whether 70, 80 or more years, life is short. Therefore, it's all the more important to be mindful of things spiritual and eternal. For, all men (and women) are destined to die and then face the judgment. Praise God we needn't face that judgment alone. Christ Jesus came into the world to die to pay the penalty for our sins. God did this because He loves us. Our prayer is that you are experiencing His love and are trusting in Him alone for your eternal life. Jesus said, "To know You, is to have eternal life." Knowing God is the key. May you not only sense His love but also know Him unto life eternal.

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Update: Friday, November 5th, 1999

Thanks be to God and to all those who are praying for our little Fighter. Caleb came through surgery on Tuesday with flying colors. We had a few bumps in the beginning as the directed donated blood was no where to be found. We thought we were going to have to make a choice between proceeding with the surgery without the blood or reschedule the surgery. The blood was found in Detroit (an hour away) and sent ASAP via taxi. The blood arrived just in time, as Caleb came off the heart/lung bypass machine; He was immediately transfused with one unit of the blood.

Caleb's numbers looked good right after surgery. That is, the pressure in his heart was good. The next day his atrial pressure was a little high as his heart was adjusting to the new blood routing (Fontan circuit). He also had to have another chest tube put in to allow air around the left lung to escape and to enhance fluid drainage.

He was extubated (taken off the breathing machine) on Wednesday morning; hence we were able to restart his HIV medications Wednesday evening after being off just 72 hours. There is a delicate balance between maintaining his heart care and HIV treatment. We look to God to work out this balance. We are also praying that Caleb has little drainage from his chest cavity via his chest tubes. [Some children remain in the hospital for up to a month waiting for the drainage to subside.] Persistent drainage will put dangerous stress on Caleb's immune system.

On Thursday Caleb was transferred from the Intensive Care to a "standard" private room! Praise God! He continues to make marvelous progress. David had the blessed opportunity to use his knowledge of Bosnian language and people with a 9 year old Bosnian cardiac surgery patient who was flown here by Samaritan's Purse (Christian relief ministry headed by Franklin Graham--Billy's son). Praise God for Sofet's fast recovery from surgery performed by Dr. Mosca on Monday. He was released from the hospital on Thursday afternoon. He smiled as widely at David's American accent speaking Bosnian as he did when they told him he could go home!

During this hospitalization we've had many exciting opportunities to encourage and pray with other families that are going through the initial stages of numbness and shock as they deal with critically ill children. One couple, parents of a three day old born with numerous congenital defects, wept mixed tears of sadness, release of anxiety, and joy as we prayed together at the Ronald MacDonald House until 2 AM on Tuesday evening. Please lift up in prayer Lucas, their little boy. God knows the details of his illnesses.

Thanks again for all your prayers. As always, may God be glorified by the life of this precious child.

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Update: Monday, November 1st, 1999

Today was a long but productive day. We had a good consultation with both the Caleb's cardiologist and cardiothoracic surgeon. The indications from his cardiac cathederization are to go ahead with the second attempt at the Fontan tomorrow (3rd open-heart surgical treatment to replumb his circulatory system). We are asking for prayer not only for success in the procedure, but also that none of the frightening complicaitons result from the many risks involved with this procedure. Thanks to all for your love and prayer. To God be the glory!!!

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Update: Saturday, October 30th, 1999

Hallelujah! Caleb continues to do well regarding his HIV status. His immune system in on a continued slooooow upward trend. His CD4 count (T-cell lymphocyte which "helps" neutralize "invaders") is now up to 428 (up from a low of 256, and 395 last month; normal for a two year old is around 2,000).

In the lesser good news department: Caleb's viral load has crept back up to 543 from an exceptional low of 41 [recall his high of 29,980]. While it is not a great concern, we must confess we are disappointed in this number since we had been hoping/praying for a continued "undetectable" viral load. Anything below 400 is considered undetectable and triggers the "ultrasensitive" test to be done. It's disappointing when the ultrasensitive test is unnecessary.

The most pertinent news we have to share is that we are departing our home in southern Illinois, just east of St. Louis, Missouri in a couple hours to drive to the University of Michigan Medical Center, C.S. Mott Children's Hospital. Caleb is scheduled for an evaluatory cardiac cathederization on Monday, November 1st, with open-heart surgery tentatively scheduled for the next day.

Join us praying that his heart condition warrants the inherent risk this surgery afords. For the inquiring minds, the objective of this surgery, known as the Fontan, is to attempt (for the second time) to complete the rerouting of Caleb's circulatory system so his deoxygenated blood returning to his heart goes directly into the pulmonary artery to be oxygenated, bypassing the heart; hence reducing the overall workload on his weak heart.

As always, we encourage you to look to God through Jesus Christ to meet all your needs. We do!

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Update: Wednesday, September 15th, 1999

Praise God! We just got the latest results from Caleb's Infectious Disease doctor. The Fighter's immune system continues to slowly rebound; his CD4 count is now up to 395 (from a low of 256). It has been slowly climbing since he started taking antiretroviral medications.

His viral load is now 41! Down from 28,980! Praise God!

Another significant development is that Caleb is again scheduled to go under the surgeon's knife. This will be his fourth open-heart surgery; scheduled for November 2nd, 1999. May God continue to be glorified through this child! May you place your faith and trust solely on Christ and Him alone! He loves you!

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Update: Saturday, August 7th, 1999

Caleb's local Pediatric Cardiologist called today to inform us of the decision he and our son's heart surgeon reached after discussing the latest evaluation of our son's heart. Their assessment is not good news. They are NOT inclined to advise we proceed with attempting the Fontan surgical procedure which was unsuccessfully attempted one year ago. Their recommendation is based on two issues, 1) they feel Caleb's heart, aside from his HIV+ status, is too weak to warrant risking the surgery, and 2) given the weakness of his heart, the surgery may not actually improve his circulation, in other words, will likely accomplish nothing.

As you might imagine, we are disappointed. The most disconcerting aspect of this most recent medical recommendation is that because Caleb is HIV+, based on today's medical technology, the much anticipated heart transplant is not possible. Hence, Caleb's options are now limited to: 1) Miraculous healing, or 2) a medical technological advance sufficient to allow heart transplantation for HIV+ patients or a breakthrough cardiothoracic surgical therapy for children with Hypoplastic Left Heart Syndrome (HLHS).

While we are not entirely pleased with today's news, as always, we trust in God, and look to Him to deliver our son. We are again reminded of the verse spoken to us through our precious Ghanaian Brother-in-Christ, Clement, "I will not die but live, and will proclaim what the LORD has done." Psalm 118:17 [NIV]

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Update: Thursday, July 8th, 1999

After being on the high-powered antiretroviral medications for just six weeks, Caleb's viral load (amount of viruses per ml of blood) has decreased from 28,000 in mid April 99 to less than 400! Given that there is a three-fold variation (possible error) in counting viral loads, and that the minimum detectable level is 100, a "less than" 400 viral load could be considered as though equal to 100 which is the minimum detectable level of the virus; i.e. negligible.

What I'm really trying to say is that this blood test showing less than 400 viral load means the on-going effect of this (HIV) virus on his immune system is (for all intensive purposes) "currently" technically neutralized.

His immune system, on the other hand, is still in need of robust improvment. We are thankful that although his immune system is still severly compromised, it is now showing "slight" signs of rebounding.

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Update: Wednesday, June 23, 1999

As of today, Caleb has now been on anti-retroviral (anti-HIV) medications for 30 days. The first two weeks were rather rough. Due to the significant increase in the volume of fluid medications he's now getting, he has struggled with frequent episodes of "reflux" (stomach contents backing up into the esophagus) accompanied by occasional vomiting. The refluxing is hard on this little boy; not to mention his parents. It is always worse during the night when we'd "like" to be sleeping. Kathy--bless her Lord--has been laboring nightly with Caleb as though nursing a newborn for over 2 years without complaint.

Caleb's needed next open-heart surgery, which was formerly scheduled for June 17, has beendelayed until his immune system shows a positive response to the anti-retroviral medications. Until that unspecified time, we thank you for joining us in prayer. Our specific focus in prayer is that the component of his immune system which is targeted and "reduced" by HIV, his CD-4, lymphocyte count would improve to above 500 cell/uL.[His last count was 256, which is approaching a dangerously low limit; normal being 1,500 to 2,000.]

Praise God for our dear Sister-in-Christ, Jennifer Raymond who spent an entire night with Kathy and Caleb to get "trained" prior to accepting responsibility to care for him "solo" for four days while we "vacationed" at Pere Marquette, a state park north of Alton, Illinois. Thanks Sis'. God bless you. It was a much needed time of refreshing.

While relaxing at Pere Marquette I read a book by Elizabeth Glaser entitled, "In the Absence of Angels" about her courageous battle with HIV. She and her two children were infected with HIV by a blood transfusion she received after delivering her first child in 1981. Both she and her first child have since died of AIDS. My son and many others have Elizabeth Glaser to thank for her success in generating attention and private and public funding for Pediatric AIDS research. Until just before her daughter died in 1988 there was no FDA approved Pediatric HIV medicine. Today there are over a dozenlargely because she "forced" the issue and raised millions of dollars for research through the Pediatric AIDS Foundation of Santa Monica, CA, which she created.

Elizabeth, we can't thank you enough.

Caleb has been growing remarkably well lately despite the added challenge of tolerating the antiretroviral medications. He is routinely repeating "EVERYTHING" we say as well as constructing his own original 2, 3, even 4 and 5 word sentences! Praise God!

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Update: Sunday, May 23rd, 1999

We returned home from the National Institute of Health in Bethesda, Maryland on Wednesday. It was a productive week. We received important medical recommendations for our "Fighter" Caleb. We praise God that EVERY doctor in the center who saw Caleb was "amazed" at how well he is doing given his complex medical history.

The chief of the oncology/HIV centers told us he was shocked when he "met" Caleb. From listening to his staff discuss Caleb's case he expected a child on life support, not the vibrant Caleb he met. We told him it was God who was responsible and deserved the credit, thanks and praise for how well Caleb is doing.

Although Caleb clinically appears to be doing remarkably well, his immune system is now showing an even greater adverse affect than it was two weeks ago. Caleb could become vulnerable to life-threatening opportunistic infections if the HIV attack is not somehow soon thwarted. Therefore, we're putting Caleb on a regimen of three high-powered anti-HIV medicines. Join us in praying that there will be none of the troublesome side effects for which these medications are infamous.

As a result of commencing this new medication Caleb's next open-heart surgery previously scheduled for June 17th is indefinitely postponed.

May God continue to be glorified through this precious life!

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Update: Thursday, May 13, 1999

So far, since Caleb has been here atthe National Institute of Health (NIH) he has amazed the medical staff.  Many have commented that they expected him to be sicker.  The staff, the foremost HIV experienced clinic in this country have noted that they are "really shaken" by Caleb's case.  In other words, this being the first HIV transmission by blood transfusion case they are aware of since 1985 when testing was implemented, has them quiteupset.

Along with winning the heart of each medical person we've met here, today Caleb amazed the neuropsycological examiners by demonstrating to them that his cognitive and fine motor skills development are on par with "normal" two year olds.  Despite thedanger of the HIV taking up residence in his brain and spinal cord, it would seem the child has suffered no ill effects yet... Praise God!

Caleb further amazed the pediatric cardiology staff when he slept through the one hour echocardiogram test of his heart.

The greatest event of today was when we had the distinct privilege of ministering the life changing gospel of Jesus Christ to fellow parent, a mother of five who's fourth child has a rare and very troubling medical syndrome.  As we shared with this mother she commented that just yesterday as she was at the end of her rope she prayed for God to send someone to help her understand what she was missing and help her deal with her son's tragic medical ordeal. She wept great tears of joy as we led her in prayer to accept the grace of God by acknowledging Jesus Christ as her Savior and Lord, hence receiving the gift of eternal life!

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Caleb's heart

Hypoplastic Left Heart Syndrome

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Caleb's Esophageal Atresia/Tracheoesophageal Fistula

Type C Esophageal Atresia with Tracheoesophageal Fistula

The upper segment of the esophagus ends in a blind pouch (EA). The lower segment of the esophagus is attached to the trachea (TEF). This is the most common type of EA/TEF. (Incidence: 86.5%)

Type C Esophageal Atresia with Tracheoesophageal Fistula

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Caleb, the Fighter

Our son, Caleb, which means "Fighter" in Hebrew, was born on March 4th, 1997 at Camp Lester Naval Hospital, Okinawa, Japan. We had no expectation that this child would be any different from our first three, normal, healthy children. Within minutes of birth we discovered he had an imperforated anus. Within an hour we discovered he was born with a Esophageal Atresia with Tracheoesophageal Fistula(EA/TEF). About four hours after birth he was diagnosed as having Hypoplastic Left Heart Syndrome. We were later to discover his imperforated anus also included a urinary-rectal fistula. All total, in his first year and a half of life we spent about six months in and out of hospitals with him.

He was operated on within six hours of birth to put a gastrointestinal tube (G-Tube) in his stomach so there would be an outlet to allow air to be vented out of his stomach during flight. The G-tube has proven to be a life saver since then as we've used it ever since to nocturnally "force-feed" him using a continuous pump. During that first surgery, since he was tolerating the anesthesia well, the surgeon also put a loop colostomy in (which he uses to this day). The next morning, just 18 hours after birth he was sent via an US Air Force C-141 Urgent Medical Evacuation flight to Travis Air Force Base, California. After stabilizing him at the Neonatal Intensive Care Unit at the Travis Base hospital, he was transported via ambulance to the University of California, San Francisco Medical Center, Moffit Hospital.

When he was just three days old he underwent his second successful surgery to connect his esophagus to his stomach. Incidentally, since I am an US Air Force Academy graduate, it was of particular interest that his surgeon, Dr. Rusty Jennings, was an Annapolis, Naval Academy graduate; thus affording a reason for friendly rivalry between surgeon and patient father. Three days later Dr. Frank Hanley successfully performed the Norwood, stage one surgery wherein Caleb's aorta was augmented with homograph (cadaver tissue), and his patent ductus arteriolis was replaced with a gortez shunt to serve as a temporary life-saving measure to conduct blood flow from Caleb's pulmonary artery to aorta until his next open-heart surgery. Due to the many complex surgical procedures to connect his esophagus and work on his heart he was kept in a chemotheraputically induced state of paralysis and on a respirator for nearly three weeks. Finally, at 18 days of life he was allowed to take some food by mouth for the first time. At 32 days old, he was discharged from the hospital for the first time. Since the airline he and his mother were scheduled to fly to Michigan did not have in-flight oxygen immediately available, the Ronald McDonald House of San Francisco allowed him and his mother to stay in Kathy's room until the in-flight oxygen became available four days later.

Over the next several months Caleb struggled with various illnesses including an infection which resulted in his fourth surgery at two months of age, which was his first surgery conducted at Mott Children's Hospital, the University of Michigan (U of M) Medical Center, Ann Arbor, Michigan. At six months of age, he underwent the Hemi-fontan (Norwood stage two) surgery under the knife of Dr. Ed Bove. We were very pleased with the "service" our son received at the U of M Medical Center.

The month prior to being admitted all four of our children got chicken pox--including Caleb. Although the Hemi-fontan was successful, that hospital stay extended for over two months due to post surgical complications which resulted in another, his sixth surgery to repair his lower esophageal sphinkter (LES). This procedure, known as the Thal Fundoplication was a surgery wherein the anterior (front) portion of his LES was literally "wrapped" with a moderate amount of stomach tissue to decrease his problematic refluxing. Reflux, stomach contents coming back up the esophagus, is a common problem for children with TEF. Over the next winter, Caleb was plagued by various illnesses resulting in dehydration and several subsequent hospitalizations caused by the roto virus. He rode quite a "hydration" roller coaster for a while. Finally, the next spring, after many medical tests and his first birthday he had a seventh surgery, known as the "Pull through" wherein his imperforated anus and urinary-rectal fistula were repaired. Unfortunately his heart was deemed to weak to justify a subsequent surgery to close the colostomy. Therefore his loop colostomy is still the primary means of waste disposal.

His echo cardiograms (heart sonar-type video X-ray) began to show such severe leakage of the tricuspid valve that his local cardiologist, Dr. Arnie Strauss, in coordination with Dr. Amnon Rosenthal, U of M Pediatric Cardiologist, and Dr. Ed Bove, U of M Chief Pediatric Cardiothoracic surgeon, decided we'd better proceed with his Fontan, third stage Norwood surgical therapy as soon as possible. He was therefore scheduled to have the Fontan performed at 18 months of age, slightly sooner than the norm. The objectives of this, his eighth operation were to complete stage 3 of the Norwood and "cinch" down the tricuspid valve, hoping to decrease its leakage which would allow the heart to decrease its work load, thus decreasing the dangerous enlargement of his heart. After opening his chest, Dr. Bove gravely decided the severe enlargement of his heart would only warrant tricuspid valve repair, NOT the Fontan.

His recovery was as topsy-turvy as the previous heart surgery. There were times we weren't sure he was going to make it. Through it all we trusted in Jesus to provide strength for our little Fighter. We appreciate his local cardiologist, Dr. Arnie Strauss, who saw him on his second birthday and remarked how fabulously he was doing! Two days later, on March 6th, 1999 we celebrated his second birthday with over a hundred people attending the biggest birthday party we'd ever been a part of!  We felt we had so much to celebrate!  We celebrated the life of God in our special boy.  The best present was that just before his birthday he FINALLY began to walk.  Now he's walking and learning to talk.  Hallelujah!

As we "patiently" anticipated his next, ninth major surgery, which would reattempt the Fontan, scheduled for June 17th, 1999 at the U of M, Mott Children Hospital, we received a phone call that was to radically affect our little Fighter's future.  A donor from whom Caleb received a blood transfusion in July 1998 tested HIV positive subsequent to the donation.  Although the doctors instructed us to have Caleb tested merely as a precaution, much to the dismay of all he has been diagnosed as HIV positive.   Caleb is now trudging down the path of this dreaded disease.  With an immune system at least mildly to moderately adversely affected by the virus, Caleb is seeking evaluation by the nation's foremost HIV research center, the National Institute of Health (NIH) in Bethesda, Maryland.

As always, we remember a verse of scripture given to us the day Caleb was born by Clement, a special brother in Christ from Ghana with whom we fellowshipped at our church in Okinawa, "I will not die, but live, and declare the glory of the LORD." Psalm 118:17 [KJV]. Despite the uncertain future, we look to the Lord Jesus, Author and finisher of our faith!

Caleb is such a cheerful little boy; so full of zest, may we all learn to enjoy life to the full with like, simple, childlike faith.  

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