Thursday, July 26, 2012

Nothing can separate us from the love of God...

In an attempt to update this evening, seems as though not much has changed with Jenny. A report today from our aunt who is with her this week read:

"Working her little heart out! Breathing and exercising to get better! GVH on skin is better....Praise God for his grace and mercy!"

We are so thankful her skin GVHD seems to be clearing; this probably means she's a little more comfortable. Breathing seems to be the same. Jenny is going to exercise classes nearly every day to improve and strengthen lung function. The docs will wait another week (next Thursday, August 2nd) to run tests on lung function in order to give the meds enough time to take effect.

Please join us in praying that the Lord will use these meds to strengthen her lungs and improve her condition. Please continue to pray that God will give her comfort and peace and use this time and this struggle to draw her and those around her closer to Himself.

Some great verses for Jenny and us sent from our uncle Keith last night:

(Side note: I chose the title for this post from one of the truths listed below...Nothing - no disease, no affliction, no scheme of man, no height, no depth, nothing in all of space or time - NOTHING can separate us from the love of God. Whew. Now that's a truth worth hanging your hat on.)

“MY PEOPLE ARE DESTROYED FOR lack of knowledge.” (Hos. 4:6)
John 1:12 But as many as received Him, to them He gave the right to become children of God, even to those who believe in His name.
I am God's child
John 15:15 “No longer do I call you slaves, for the slave does not know what his master is doing; but I have called you friends, for all things that I have heard from My Father I have made known to you.
I am Jesus’ friend
1 Cor. 6:17 But the one who joins himself to the Lord is one spirit with Him.
I am united with the Lord and one spirit with Him
1 Cor. 6:19-20 Or do you not know that your body is a temple of the Holy Spirit who is in you, whom you have from God, and that you are not your own? For you have been bought with a price; therefore glorify God in your body.
I have been bought with a price; I belong to God
Eph. 1:4-5 Just as He chose us in Him before the foundation of the world, that we would be holy and blameless before Him. In love He predestined us to adoption as sons through Jesus Christ to Himself, according to the kind intention of His will.
I have been chosen by God and adopted as His child
Col. 1:13-14 For He rescued us from the domain of darkness, and transferred us to the kingdom of His beloved Son, in whom we have redemption, the forgiveness of sins.
I have been redeemed and forgiven for all my sins
Col. 2:9-10 For in Him all the fullness of Deity dwells in bodily form, and in Him you have been made complete, and he is the head over all rule and authority.
I am complete in Christ
Rom. 8:1 Therefore there is now no condemnation for those who are in Christ Jesus.
I am free forever from condemnation
Rom. 8:35-39 Who will separate us from the love of Christ? Will tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? Just as it is written, “FOR YOUR SAKE WE ARE BEING PUT TO DEATH ALL DAY LONG; WE WERE CONSIDERED AS SHEEP TO BE SLAUGHTERED.” But in all these things we overwhelmingly conquer through Him who loved us. For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord.
I cannot be separated from the love of God
2 Cor. 1:21-22 Now He who establishes us with you in Christ and anointed us is God, who also sealed us and gave us the Spirit in our hearts as a pledge.
I have been established, anointed and sealed by God
Col. 3:3-4 For you have died and your life in hidden with Christ in God. When Christ, who is our life, is revealed, then you also will be revealed with Him in glory.
I am hidden with Christ in God and will be revealed with Him in glory
Phil. 1:6 For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus.
I know that the good work God has begun in me will be completed
Phil. 3:20 For our citizenship is in heaven, from which also we eagerly wait for a Savior, the Lord Jesus Christ.
I am a citizen of heaven
John 15:16 “You did not choose Me but I chose you, and appointed you that you would go and bear fruit, and that your fruit would remain, so that whatever you ask of the Father in My name He may give to you.”
I have been appointed and chosen to bear fruit that will last
1 Cor. 3:16 Do you not know that you are a temple of God and that the Spirit of God dwells in you?
I am a temple of God indwelt by His Spirit
Eph. 2:6 …and raised us up with Him, and seated us in the heavenly places in Christ Jesus.
I am seated with Christ in the heavenly realm
Eph. 2:10 For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand so that we would walk in them.
I am made by God and equipped by Him for His great purpose
Phil. 4:13 I can do all things through Him who strengthens me.
I can do all He asks because He supplies the power to do it

Thursday, July 19, 2012

The Battle Wages On

As the post title would lead you to believe, Jen is still very much in a battle against the diseases that are waging war on her body. She contracted graft-vs-host disease (GVHD) post-transplant, which surprised no one and is to be expected in many cases. GVHD manifests itself through a wide range of difficulties- with skin rashes at one end of the spectrum and organ failure at the other, more severe, end. Jennifer experienced a skin rash and issues with her gut (both GVHD-related) through the spring and both were thought to be under control after a regimen of treatments. Unfortunately, both have come back, more so the rash than the GI tract issues, and are making Jen quite uncomfortable.

A couple of weeks ago, Jennifer went in to have her lungs tested. At her 100-day post-transplant appointment, her lung function was registering poorly and the doc wanted to test it again. This go-round lung function was down to 25% capacity. After what seemed to be a clear CT scan, the docs concurred that GVHD has entered into the tiny air passageways that feed into her bronchial sacs. (The presumption is because the GVHD is in such a small area, a CT scan could not pick it up and therefore presented clear.) In the lungs, GVHD takes on a new name: BOS (bronchiolitis obliterans syndrome) and can be terminal. The docs decided to begin Jennifer on a new regimen of meds- a clinical trial called FAM. These are anti-inflammatory steroids that should help her air passageways stay open so that she can exhale properly. You see, inhaling is not the problem. She can take a good, deep breath just the same as you and me. It's the exhaling that proves to be tricky. By pursing her lips together, she can force air out but anyone that has ever had trouble with their breathing (for any reason) can attest to it being a scary, uncomfortable thing. In some cases, FAM has proven to reverse damage done by BOS and in a few it has treated the BOS completely.

Now it is a matter of time waiting to see the effect the meds will have on Jen's condition. It can be a frightening, anxiety-laden day-to-day but once again we turn our eyes to Jesus and ask for the comfort, peace, and healing that only he can give. And, O Lord, in your mercy and graciousness we beg you to use this for your glory. Glorify yourself in the life and struggle of Jennifer. Bring her, as well as those impacted by her journey, closer to yourself. Oh, that you would be honored, that you would be glorified, that your name, the name greater than all others, would be praised, lifted high and adored. That you would be seen as a loving, caring, just and sovereign God deserving of all our worship, adoration and praise. This is our prayer. Whether you choose to heal Jennifer on earth or in eternity, let our hearts rest knowing that you hold it all in your hands, and it is all GOOD. We love you, and we thank you for your matchless love towards us.

TURN YOUR EYES UPON JESUS
Words and Music by Helen H. Lemmel
1922

O soul are you weary and troubled?
No light in the darkness you see?
There's light for a look at the Saviour,
And life more abundant and free.

Refrain
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His Glory and Grace.

Through death into life everlasting
He passed, and we follow Him there;
Over us sin no more hath dominion -
For more than conquerors we are!

Refrain
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His Glory and Grace.

His Word shall not fail you - He promised;
Believe Him, and all will be well;
Then go to a world that is dying,
His perfect salvation to tell.

Refrain
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His Glory and Grace

Friday, June 29, 2012

Samples of Summer

This past week Jen and Matt had the opportunity to take a nice little getaway to Chattanooga. They stayed in a quaint B & B, went to Rock City, visited Covenant College, and explored an aquarium (*see pics below!).
In front of the penguin exhibit.

Penguins! ...or not?


Jellyfish! I dare you to jump!

The summer has been trucking along rather smoothly for the Samples. Matt finished his residency last Friday, June 22nd and began his fellowship today, June 29th. Jen is doing well, with not too many changes recently. It seems as though the GVHD that was appearing on her skin and in her gut is clearing. She is hoping her docs will begin to wean her off of her meds and her photophoresis treatments, preferably the meds first as they have some unpleasant side effects. She is anticipating them making some decisions next Thursday. Jen is asking for prayer for Matt as he begins his fellowship in cardiology at Vanderbilt and also for her lungs. Her lung function took a dip in the past couple months, and she is prayerful that the docs will find her lungs up and running at their baseline (pre-transplant) level, especially because this will prevent her from having to take more meds.

Matt and Jen have enjoyed spending some time at Cheekwood in Nashville throughout the summer. Cheekwood is a really neat venue that hosts concerts and other musical events along with botanical gardens and other exhibits of interest. One exhibit they visited more recently were treehouses that had been built based off of children's books such as a pirate ship and a rainbow fish (that one was made out of cds, really cool!). In honor of Matt's birthday this Sunday, they are going to see Jerry Seinfeld's stand-up comedy act tonight.

As you can see, Jen is having a great summer and staying pretty busy! Though she's careful to schedule naps through the day as she is still lacking some energy, something that can easily be zapped in this hot, southern Summer sun!

As always, thank you for your prayers and your concern. Let us all be in prayer that we will not take our health or our days so graciously given to us for granted. We serve such a loving God. He is so good to us, and his goodness knows no bounds. Thank you, Father, for your care, your protection, your love, and your goodness to us. And, (grimace), thank you for the sunshine, Lord. Though it is hot, keep us mindful of our complaining. We are an abundantly blessed people. Let us not forget that.

Wednesday, May 16, 2012

The Great Physician at Work

The latest bone marrow biopsy results are in and reveal 99% of Jennifer's marrow as being donor marrow. The 1% that is showing up as her's could very well be from some of the bone getting into the sample when they drew, and the doctor sees no reason to be concerned about that 1%. Furthermore, there were no cancerous cells detected, and the doc has recently 'green-lighted' her to drive. After eight months of being dependent on someone else for transportation, this all-too-often-taken-for-granted freedom is a sweet release for Jen.

Please join us in praising God for these results. Again, they are direct evidence that the Great Physician is very much a part of Jen's treatment and healing. He has not left her side for one moment, and it is thrilling to see Him so actively at work through this positive news. We remember, though, had we gotten unfavorable news, He is still the Great Physician, still our loving Father, still our merciful Savior, and still our sovereign Lord. We do rejoice that He found it in her best interest and most glorifying to Himself to allow Jen to have what seems to be a successful transplant. We pray He will continue to heal her body and restore her health; that He will protect her major organs from graft vs. host disease; that He will continue to uphold her with His strong right hand. Thanks be to God for all of His goodness and mercy to us.

Tuesday, May 8, 2012

Oh for grace to trust Him more...

Tis so sweet to trust in Jesus
Just to take Him at His word
Just to rest upon His promise
And to know, "Thus saith the Lord."

Oh, how sweet to trust in Jesus
Just to trust His cleansing blood
And in simple faith to plunge me
'Neath the healing, cleansing flood

Yes, 'tis sweet to trust in Jesus
Just from sin and self to cease
Just from Jesus simply taking
Life and rest, and joy and peace

I'm so glad I learned to trust Thee
Precious Jesus, Savior, Friend
And I know that Thou art with me
Wilt be with me to the end

Jesus, Jesus, how I trust Him
How I've proved Him o'er and o'er
Jesus, Jesus, precious Jesus
Oh, for grace to trust Him more...

~Louisa M. R. Stead

Jennifer's testing last Thursday revealed there was no GVHD in her eyes. Bloodwork indicated a low platelet count and low white blood cell count but more tests yesterday showed her counts had recovered. The tests performed on her lungs revealed her lung function is not up to par with her baseline ('baseline' being all her major organs' functions pre-transplant). The doc didn't seem too concerned with this but has prescribed two meds and an inhaler to help with lung function. We are still awaiting the bone marrow biopsy results.

Prayerful Ponderings:
Father, thank You for protecting Jennifer's eyes. Thank You for her count levels recovering. I pray for her lungs. I pray You will restore them and strengthen them. I pray for her other major organs, that You will protect them from GVHD. Place Your healing hands upon her body and restore her health. Father, whether You choose to heal her completely, partially, or not at all, help us remember that Your glory is of utmost importance. Our temporary discomforts, and even momentary happiness, on this earth are nothing but vapor. We are made for eternity. Father, thank You for providing a Way for us to spend eternity with You. We await the day when we join all the others who have gone before us in worshipping You forever, worshipping You perfectly- the way You deserve. Thank You for Your patience with us when we become so consumed with this world. Help us remember we are just passing through; not only is it momentary but it is to be lived with You at the center, not ourselves. There is coming a day when all of this will pass away, we will be called to give an account for the way we lived our lives, and we will be judged. Thank You that when we, as Christians, stand in judgement, we will be clothed in the righteousness of Christ - a gift You graciously made available to all who would accept it. Thank You for Your goodness to us. Thank You that even in moments of turmoil, strife, sadness and heartache, our hope is not lost. We have the hope of heaven; we have the redemptive work of Your Son to cling to; we have the blessing of looking forward to an eternity spent with You.

The Vandy Verse:
Many, O Lord my God, are the wonders you have done. The things you planned for us no one can recount to you; were I to speak and tell of them, they would be too many to declare. Psalm 40:5

Tuesday, May 1, 2012

The Nuts and Bolts of BMT

The following is a wonderfully comprehensive document on bone marrow transplants that a church friend of our's found. I thought I would post it here as it serves as a great summary of what Jen has endured.

BONE MARROW TRANSPLANT
COLUMBIA PRESBYTERIAN MEDICAL CENTER
Herbert Irving Comprehensive Cancer Center

The Nuts and Bolts of Bone Marrow Transplants
Bone marrow transplantation (BMT) is a relatively new medical procedure being used to treat diseases once thought incurable. Since its first successful use in 1968, BMTs have been used to treat patients diagnosed with leukemia, aplastic anemia, lymphomas such as Hodgkin's disease, multiple myeloma, immune deficiency disorders and some solid tumors such as breast and ovarian cancer.

In 1991, more than 7,500 people underwent BMTs nationwide. Although BMTs now save thousands of lives each year, 70 percent of those needing a BMT using donor marrow are unable to have one because a suitable bone marrow donor cannot be found.

WHAT IS BONE MARROW?
Bone marrow is a spongy tissue found inside bones. The bone marrow in the breast bone, skull, hips, ribs and spine contains stem cells that produce the body's blood cells. These blood cells include white blood cells (leukocytes), which fight infection; red blood cells (erythrocytes), which carry oxygen to and remove waste products from organs and tissues; and platelets, which enable the blood to clot.
WHY TRANSPLANT?
In patients with leukemia, aplastic anemia, and some immune deficiency diseases, the stem cells in the bone marrow malfunction, producing an excessive number of defective or immature blood cells (in the case of leukemia) or low blood cell counts (in the case of aplastic anemia). The immature or defective blood cells interfere with the production of normal blood cells, accumulate in the bloodstream and may invade other tissues.

Large doses of chemotherapy and/or radiation are required to destroy the abnormal stem cells and abnormal blood cells. These therapies, however, not only kill the abnormal cells but can destroy normal cells found in the bone marrow as well. Similarly, aggressive chemotherapy used to treat some lymphomas and other cancers can destroy healthy bone marrow. A bone marrow transplant enables physicians to treat these diseases with aggressive chemotherapy and/or radiation by allowing replacement of the diseased or damaged bone marrow after the chemotherapy/radiation treatment.

While bone marrow transplants do not provide 100 percent assurance that the disease will not recur, a transplant can increase the likelihood of a cure or at least prolong the period of disease-free survival for many patients.

TYPES OF TRANSPLANTS
In a bone marrow transplant, the patient's diseased bone marrow is destroyed and healthy marrow is infused into the patient's blood-stream. In a successful transplant, the new bone marrow migrates to the cavities of the large bones, engrafts and begins producing normal blood cells.

If bone marrow from a donor is used, the transplant is called an "allogeneic" BMT, or "syngeneic" BMT if the donor is an identical twin. In an allogeneic BMT, the new bone marrow infused into the patient must match the genetic makeup of the patient's own marrow as perfectly as possible. Special blood tests are conducted to determine whether or not the donor's bone marrow matches the patient's. If the donor's bone marrow is not a good genetic match, it will perceive the patient's body as foreign material to be attacked and destroyed. This condition is known as graft-versus-host-disease (GVHD) and can be life-threatening. Alternatively, the patient's immune system may destroy the new bone marrow. This is called graft rejection.

There is a 35 percent chance that a patient will have a sibling whose bone marrow is a perfect match. If the patient has no matched sibling, a donor may be located in one of the international bone marrow donor registries, or a mis-matched or autologous transplant may be considered.

In some cases, patients may be their own bone marrow donors. This is called an autologous BMT and is possible if the disease afflicting the bone marrow is in remission or if the condition being treated does not involve the bone marrow (e.g. breast cancer, ovarian cancer, Hodgkin's disease, non-Hodgkin's lymphoma, and brain tumors). The bone marrow is extracted from the patient prior to transplant and may be "purged" to remove lingering malignant cells (if the disease has afflicted the bone marrow).

PREPARING FOR THE TRANSPLANT
A successful transplant requires the patient be healthy enough to undergo the rigors of the transplant procedure. Age, general physical condition, the patient's diagnosis and the stage of the disease are all considered by the physician when determining whether a person should undergo a transplant.

Prior to a bone marrow transplant, a battery of tests is carried out to ensure the patient is physically capable of undergoing a transplant. Tests of the the patient's heart, lung, kidney and other vital organ functions are also used to develop a patient "baseline" against which post-transplant tests can be compared to determine if any body functions have been impaired. The pre-transplant tests are usually done on an outpatient basis.

A successful bone marrow transplant requires an expert medical team - doctors, nurses, and other support staff - who are experienced in bone marrow transplants, can promptly recognize problems and emerging side effects, and know how to react swiftly and properly if problems do arise. A good bone marrow transplant program will also recognize the importance of providing patients and their families with emotional and psychological support before, during and after the transplant, and will make personal and other support systems readily available to families for this purpose.

BONE MARROW HARVEST
Regardless of whether the patient or donor provides the bone marrow used in the transplant, the procedure used to collect the marrow - the bone marrow harvest - is the same. The bone marrow harvest takes place in a hospital operating room, usually under general anesthesia. It involves little risk and minimal discomfort.

While the patient is under anesthesia, a needle is inserted into the cavity of the rear hip bone or "iliac crest" where a large quantity of bone marrow is located. The bone marrow - a thick, red liquid - is extracted with a needle and syringe. Several skin punctures on each hip and multiple bone punctures are usually required to extract the requisite amount of bone marrow. There are no surgical incisions or stitches involved - only skin punctures where the needle was inserted.

The amount of bone marrow harvested depends on the size of the patient and the concentration of bone marrow cells in the donor's blood. Usually one to two quarts of marrow and blood are harvested. While this may sound like a lot, it really only represents about 2% of a person's bone marrow, which the body replaces in four weeks.

When the anesthesia wears off, the donor may feel some discomfort at the harvest site. The pain will be similar to that associated with a hard fall on the ice and can usually be controlled with Tylenol. Donors who are not also the BMT patient are usually discharged after an overnight stay and can fully resume normal activities in a few days.

For autologous transplants, the harvested bone marrow will be frozen (cryopreserved) and stored at a temperature between -80 and -196 degrees centigrade until the day of the transplant. It may first be "purged" to remove residual cancerous cells that can't be easily identified under the microscope.

In allogenic BMTs, the bone marrow may be treated to remove "T-cells" (T cell depletion) to reduce the risk of graft-versus-host disease. It will then be transferred directly to the patient's room for infusion.

PREPARATIVE REGIMEN
A patient admitted to the bone marrow transplant unit will first undergo several days of chemotherapy and/or radiation which destroys bone marrow and cancerous cells and makes room for the new bone marrow. This is called the conditioning or preparative regimen. The exact regimen of chemotherapy and/or radiation varies according to the disease being treated and the "protocol" or preferred treatment plan of the facility where the BMT is being performed.

Prior to conditioning, a small flexible tube called a catheter (sometimes called a "Hickman" or central venous line) will be inserted into a large vein in the patient's chest just above the heart. This tube enables the medical staff to administer drugs and blood products to the patient painlessly, and to withdraw the hundreds of blood samples required during the course of treatment without inserting needles into the patient's arms or hands.

The dosage of chemotherapy and/or radiation given to patients during conditioning is much stronger than dosages administered to patients with the same disease who are not undergoing a BMT. Patients may become weak, irritable and nauseous. Most BMT centers administer anti-nausea medications to minimize discomfort.

THE TRANSPLANT
A day or two following the chemotherapy and/or radiation treatment, the transplant will occur. The bone marrow is infused into the patient intravenously in much the same way that any blood product is given. The transplant is not a surgical procedure. It takes place in the patient's room, not an operating room.

Patients are checked frequently for signs of fever, chills, hives and chest pains while the bone marrow is being infused. When the transplant is completed, the days and weeks of waiting begin.

ENGRAFTMENT
The two to four weeks immediately following transplant are the most critical. The high-dose chemotherapy and/or radiation given to the patient during conditioning will have destroyed the patient's bone marrow, crippling the body's "immune" or defense system. As the patient waits for the transplanted bone marrow to migrate to the cavities of the large bones, set up housekeeping or "engraft," and begin producing normal blood cells, he or she will be very susceptible to infection and excessive bleeding. Multiple antibiotics and blood transfusions will be administered to the patient to help prevent and fight infection. Transfusions of platelets will be given to prevent bleeding. Allogenic patients will receive additional medications to prevent and control graft-versus-host disease.

Extraordinary precautions will be taken to minimize the patient's exposure to viruses and bacteria. Visitors and hospital personnel will wash their hands with antiseptic soap and, in some cases, wear protective gowns, gloves and/or masks while in the patient's room since they often carry fungi and bacteria that pose a risk of infection. When leaving the room, the patient may wear a mask, gown and gloves as a barrier against bacteria and virus, and as a reminder to others that he or she is susceptible to infection. Blood samples will be taken daily to determine whether or not engraftment has occurred and to monitor organ function. When the transplanted bone marrow finally engrafts and begins producing normal blood cells, the patient will gradually be taken off the antibiotics, and blood and platelet transfusions will generally no longer be required. Once the bone marrow is producing a sufficient number of healthy red blood cells, white blood cells and platelets, the patient will be discharged from the hospital, provided no other complications have developed. BMT patients typically spend four to eight weeks in the hospital.
WHAT A PATIENT FEELS DURING THE TRANSPLANT
A bone marrow is a physically, emotionally, and psychologically taxing procedure for both the patient and family. A patient needs and should seek as much help as possible to cope with the experience. "Toughing it out" on your own is not the smartest way to cope with the transplant experience.

The bone marrow transplant is a debilitating experience. Imagine the symptoms of a severe case of the flu- nausea, vomiting, fever, diarrhea, extreme weakness. Now imagine what it's like to cope with the symptoms not just for several days, but for several weeks. That approximates what a BMT patient experiences during hospitalization.

During this period the patient will feel very sick and weak. Walking, sitting up in bed for long periods of time, reading books, talking on the phone, visiting with friends or even watching TV may require more energy that the patient has to spare.

Complications can develop after a bone marrow transplant such as infection, bleeding, graft-versus-host disease, or liver disease, which can create additional discomfort. The pain, however, is usually controllable by medication. In addition, mouth sores can develop that make eating and swallowing uncomfortable. Temporary mental confusion sometimes occurs and can be quite frightening for the patient who may not realize it's only temporary. The medical staff will help the patient deal with these problems.

HANDLING EMOTIONAL STRESS
In addition to the physical discomfort associated with the transplant experience there is emotional and psychological discomfort as well. Some patients find the emotional and psychological stress more problematic than the physical discomfort.

The psychological and emotional stress stems from several factors. First, patients undergoing transplants are already traumatized by the news that they have a life-threatening disease. While the transplant offers hope for their recovery, the prospect of undergoing a long, arduous medical procedure is still not pleasant and there's no guarantee of success.

Second, patients undergoing a transplant can feel quite isolated. The special precautions taken to guard against infection while the immune system is impaired can leave a patient feeling detached from the rest of the world and cut off from normal human contact. The patient is housed in a private room, sometimes with special air-filtering equipment to purify the air. The number of visitors is restricted and visitors are asked to wear gloves, masks and/or other protective clothing to inhibit the spread of bacteria and virus while visiting the patient. When the patient leaves the room, he or she may be required to wear a protective mask, gown and/or gloves as a barrier against infection. This feeling of isolation comes at the very time in a patient's life when familiar surroundings and close physical contact with family and friends are most needed.
"Helplessness" is also a common feeling among bone marrow transplant patients, which can breed further feelings of anger or resentment. For many, it's unnerving to be totally dependent on strangers for survival, no matter how competent they may be. The fact that most patients are unfamiliar with the medical jargon used to describe the transplant procedure compounds the feeling of helplessness. Some also find it embarrassing to be dependent on strangers for help with basic daily functions such as using the washroom.

The long weeks of waiting for the transplanted marrow to engraft, for blood counts to return to safe levels, and for side effects to disappear increase the emotional trauma. Recovery can be like a roller coaster ride: one day a patient may feel much better, only to awake the next day feeling as sick as ever.

LEAVING THE HOSPITAL
After being discharged from the hospital, a patient continues recovery at home (or at lodging near the transplant center if the patient is from out of town) for two to four months. Patients usually cannot return to full-time work for up to six months after the transplant.

Though patients will be well enough to leave the hospital, their recovery will be far from over. For the first several weeks the patient may be too weak to do much more than sleep, sit up, and walk a bit around the house. Frequent visits to the hospital or associated clinic will be required to monitor the patient's progress, and to administer any medications and/or blood products needed. It can take six months or more from the day of transplant before a patient is ready to fully resume normal activities.

During this period, the patient's white blood cell counts are often too low to provide normal protection against the viruses and bacteria encountered in everyday life. Contact with the general public is therefore restricted. Crowded movie theaters, grocery stores, department stores, etc. are places recovering BMT patients avoid during their recuperation. Often patients will wear protective masks when venturing outside the home.

A patient will return to the hospital or clinic as an outpatient several times a week for monitoring, blood transfusions, and administration of other drugs as needed. Eventually, the patient becomes strong enough to resume a normal routine and to look forward to a productive, healthy life.

LIFE AFTER TRANSPLANT
It can take as long as a year for the new bone marrow to function normally. Patients are closely monitored during this time to identify any infections or complications that may develop.

Life after transplant can be both exhilerating and worrisome. On the one hand, it's exciting to be alive after being so close to death. Most patients find their quality of life improved after transplant.

Nonetheless, there is always the worry that relapse will occur. Furthermore, innocent statements or events can sometimes conjure up unpleasant memories of the transplant experience long after the patient has recovered. It can take a long time for the patient to come to grips with these difficulties.

IS IT WORTH IT?
Yes! For most patients contemplating a bone marrow transplant, the alternative is near-certain death. Despite the fact that the transplant can be a trying experience, most find that the pleasure that comes from being alive and healthy after the transplant is well worth the effort.

Monday, April 30, 2012

So Glad You Made It!!

Happy 100-days to you!
Happy 100-days to you!
Happy 100-days dear J-E-N-N-I-F-E-R....
Happy 100-days to you!!


Today is Jennifer's 100th day post-transplant!! Congratulations Jenny! You continue to be such an inspiration to us all, and we are overwhelmed as we look back, not only on the last 100 days but all the way back to September 13th, and see God's hand clearly at work in your life and your journey through this illness.

The last 100 days have been incredibly hard. Jennifer went through a very aggressive round of chemotherapy and radiation therapy. Her bone marrow was completely ablated; her immune system obliterated. The bone marrow transplant was, as far as we know up to this point, successful. Her bone marrow has engrafted and is 100% donor. Graft-vs.-Host-Disease (also known as GVHD) has reared its ugly head, as it commonly does with transplant patients. GVHD occurs when the donor's organ (in this case, the bone marrow) recognizes the host as an unfamiliar, unfriendly site and begins to attack it as a foreign body. Jennifer's GVHD manifested itself in the form of a rash which covered, at its worst point, up to 50% of the surface area of her skin. The rash was treated with phototherapy (tanning bed-like sessions) and began to clear. She began having issues with her GI tract, and there was concern that the GVHD had entered her gut. She was prescribed sessions of photophoresis where blood is extracted from her body, run through a machine that rids it of its T-cells, and then reenters her body. She is currently undergoing photophoresis at twice-a-week clinic visits and seems to be improving with it.

Along with the daily 'grind' of having to be extraordinarily particular with her diet (due to the GI issues), wearing a mask anytime she's in public, taking staggering amounts of various medications, and dealing with the general 'what now?' feelings, Jennifer is continuing strong and courageous as her fight wages on.

She is, of course, human. Anyone undergoing this strenuous amount of treatment would certainly find it nearly suffocating, perhaps insurmountable, at times. I have often been reminded that God allows nothing to come into our lives that we, with Him at our side, cannot handle, that He will not let us endure anything we cannot bear. Then I think, "Boy, He must believe Jennifer to be one tough cookie." Of course this toughness, this ability to  bravely face the fear and the unknown and the seemingly endless treatment of this disease all comes from Him. There is nothing good in any of us that does not come straight from Him. So I thank Him for equipping her with what she needs for every minute of her sometimes grueling days. She is a fighter and continues to fight well. She has a good Leader in this fight, and I am certain that one day she will come into the blessings of being His faithful follower.

"Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share in your Master's happiness!" Matthew 25: 21

Prayerful Ponderings:
Please pray, with thanksgiving, that our gracious Lord and heavenly Father has seen Jennifer through these last seven and a half months and, especially, the last crucial 100-days. Please pray that He will lift her spirits and give her a renewed sense of purpose with this essentially 'new' life she is beginning post-transplant. Pray that her heart will be filled with the hope and encouragement that can only come from the True Source of these things; that she will find joy in each passing day and find herself overwhelmed by the sheer delight of her soul in the Lord. Her 100-day evaluations are on Thursday. Please pray these go well and for her to receive postive reports on her progress up to this point. Also, please pray the photophoresis treatments continue to be effective. Praise God for His great mercy and unending lovingkindness toward Jen and her family. We are undeserving of all the goodness He has mercifully rained down on us. Humbly, we thank you Lord.