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My Father's way may twist and turn,

My heart may throb and ache,

but in my soul I'm glad I know,

He maketh no mistake.

My cherished plans may go astray,

My hopes may fade away,

But still I'll trust my Lord to lead 

For He doth know the way.

Tho' night be dark and it may seem

That day will never break;

I'll pin my faith, my all in Him,

He maketh no mistake.

There's so much now I cannot see,

My eyesight's far too dim;

But come what may, I'll simply trust

And leave it all to Him.

For by and by the mist will lift

And plain it all He'll make.

Through all the way, tho' dark to me,

He made not one mistake.

-A.M. Overton

Lately I've been thinking about how the Lord has used many of you to voice prayers when we've lacked the words; and carry burdens for our family when we've lacked the strength.  It has truely been overwhelming, but in an amazing peace-filled and joy-filled way. 

I want to take a picture of that with us to Nashville.  So, if you feel led, we would love for you to make a small sign (anywhere from a 3x5 card to a 11x14 piece of paper) to hang in Ethan's hospital room. We want to fill the walls with sciptural truths and your prayers for Ethan.   I really think the Lord wants to use your words to encourage our hearts and speak loudly of His glory at Vanderbilt Hospital. 

Thanks for Journeying With Us,
Sara

Our Vandy Visit

Wednesday morning, we traveled to Children’s Hospital at Vanderbilt for a consultation with some of their Hematology/Oncology team.  In particular, we met with a Transplant Coordinator and the Director of Pediatric Stem Cell Transplants, Dr. Frangoul.  Even in the short time there, we very impressed with the kind and helpful staff.  We learned a lot about the transplant process in general, but we also spent much of our time discussing Ethan’s unique transplant needs.

A Couple Options
Dr. Frangoul explained that there are actually two types of transplants.  Until Wednesday we had only heard of the more traditional, ‘Standard/Full Transplant.’  The words ‘standard’ or ‘full’ refer to the amount of chemotherapy (toxicity) used prior to the actual transplant.  But we learned there is another type of transplant, a ‘Reduced Intensity Transplant.’  As you can probably guess, in this type of treatment the amount of chemotherapy is reduced. 

Our doctor explained that for most younger patients the Standard/Full Transplant is the best option.  The full intensity of chemotherapy, after all, is more likely to kill the offending cells reducing the chance that the MDS or Leukemia returns.  So why consider another option?  Well, the downside to the Standard/Full Transplant is that such an intense level of toxicity has the potential to damage organs.  While most young children have healthy and strong organs with little use and almost no damage, those who have pre-existing organ damage (i.e. smokers with damaged lungs or alcoholics with damaged kidneys) often need a treatment that may lessen the harm caused by full chemotherapy.

Of course, Ethan has an unusual amount of ‘wear and tear’ on his organs for his age.  Because he spent weeks on a ventilator and has a history of hypertension, he may not be a great candidate for a Standard/Full Transplant.  One of our biggest concerns, along with Dr. Frangoul, is the difficulty Ethan still has with swallowing and the tendency he has to aspirate.  Evidently, a side-effect of chemotherapy can be thick mucus in the mouth, nose and throat.  The inability to ‘handle’ this extra fluid could lead to serious complications and even result in more time on a ventilator.

Dr. Frangoul ordered several test to help determine which treatment would best for Ethan. These included an echocardiogram, EKG and blood work, all of which was done Wednesday at Vanderbilt.  A chest X-ray and perhaps even a swallow study will be done in Knoxville.  At this point, however, it seems that Ethan will be a better candidate for the Reduced Intensity Transplant.  Again, the hope is that the reduced amount of chemotherapy is enough to kill-off the bone marrow, but not enough to do more irreparable damage to already fragile organs.  If this treatment was unsuccessful, we’d then pursue a Standard/Full Transplant.

What’s Next
Obviously, one of our most pressing questions has been ‘so when can we get started?’  But this question will not be fully answered until it is determined which treatment is better for Ethan.  Interestingly, cord blood stem cells are not a great option for a Reduced Intensity Transplant.  The good news is that Dr. Frangoul indicated that Ethan had a more ‘common typing’ and that their search has already returned good preliminary matches, both cord and bone marrow. 

Because the process of obtaining bone marrow donations is a little more complicated than obtaining cord blood, the wait for a Reduced Intensity Transplant would probably be slightly longer than for the Standard Transplant.  Our best guess is that a Cord Blood Transplant may be 2 to 3 weeks away while a Bone Marrow Transplant may be 4 to 6 weeks away.  And if, like us, you’re wondering if we have that much time, Dr. Frangoul said that the average time that it takes for MDS with Monosomy 7 to turn into Leukemia is 6-12 months.  Of course, there are instances that it has taken only a few weeks and others in which it has taken years.

Prayer with Thanksgiving
Of course we are asking that God would give the medical team great wisdom in determining which transplant option would be best suited for Ethan.  We’re still praying for the best match possible (whether bone marrow or cord blood) and that Ethan would be able to receive a successful treatment before his MDS (Monosomy 7) develops into Leukemia. 

And we are learning that there is so much we don’t know… there is much we don’t even know to ask our Heavenly Father.  But we’re reminded that He knows what we need before we ask Him (Matt. 6:8) and that He gives generously and graciously to His children (Matt. 7:11; Rom. 8:32).  The Lord is so good and faithful and our hearts are full of thanksgiving and praise to Him!  He is our Hope.  He is our Strength.  He is our Refuge.  He is our Deliver.  He is our Joy.  So pray with us for our little guy, but also praise the Lord with us… for all He has done and will do!

But I will hope continually and will praise you yet more and more. My mouth will tell of your righteous acts, of your deeds of salvation all the day, for their number is past my knowledge. With the mighty deeds of the Lord GOD I will come; I will remind them of your righteousness, yours alone. O God, from my youth you have taught me, and I still proclaim your wondrous deeds. - Psalm 71:14-17

Journeying On,
Jared (and Sara)

Praising and Praying

Saturday afternoon Ethan had his 3rd blood test this week and his platelet count was still high enough to avoid a transfusion.  Although it's still dropping, the pace has slowed a bit.  Our doctor has been in correspondence this week with Vanderbilt, and he received an email late Thursday night that he printed out to share with us. 

They have scheduled a consult appointment for Ethan on August 3rd, which would be a day-trip to Nashville for some preliminary testing and paperwork.  If they have a cancellation on July 27th, we could go next week. This consultation is based on the fact the transplant coordinator has "reserved VERY good cord units for him."  This is very encouraging news to our ears.  Although we don't yet know anything about these matches, we have hope that they  have found good prospects. We do know that the matches they do have are cord blood units (blood banked from a newborn's umbilical cord blood). 

Ethan will continue to be monitored closely by his doctor at Children's Hospital until our consultation.  I am so very thankful that he still loves to play, run and tackle his sister even when he is so sick.  The Lord has kept his PICC line working, his platelets acceptable and our hearts encouraged this week.  We pray the same for the weeks to come.

Although we still have lots of questions and many unknowns, we do feel encouraged and hopeful. We are so very overwhelmed and blessed by your cards, encouragement, prayers and for the blood and DNA samples given in Ethan's name.

Journeying On,
Sara (and Jared)

It's No Mistake

As we've tried to transition back to "normal" this week, I've had some time to reflect on the events that have unfolded over the past few weeks.  There is still much to process and understand, and some of it might not happen this side of heaven.  But one thing I have become certain of is that God is guiding every tiny step of our journey, and he was preparing my heart before the storm.

It is no mistake...
...that Jared was in Nicaragua on a mission's trip, requiring me to solely depend on God as comforter, rather than Jared.
...that the night before Ethan's doctor's appointment and hospital admission neither of the kids were sleeping, so as I listened to them cry themselves to sleep the Lord had me reading James 1.
...that a month before I was prompted by the story of another local girl and was looking into joining the bone marrow registry.
...that my heart and mind were already thinking about living away from home for several weeks as we prepared for Baltimore (a trip that is obviously on hold, thankfully we don't loose our acceptance or place on the waiting list).

These are just a few of the places God has allowed me to see His perfect hand of guidance and love.  My mind is filled daily with little things, prayers and scriptures to fill up our faith box; many of which have come from your words and encouragement.  What joy my heart has been able to know because of the Spirit's work on behalf of your prayers....it truly is indescribable peace. 

On a side note, Ethan has loved being reunited with his sister and playing at home.  I have to remind myself that he is sick because he does not look it and he certainly doesn't act like it.  His counts have continued to drop this week and will be rechecked tomorrow.  So far they've remained high enough to avoid a transfussion. 

We continue to plead with the Father...
-That His Holy name would be glorified
-That He would provide the perfect match for Ethan
-For Ethan to continue to fight of the daily germs he encounters and not become sick
-His blood levels to remain high enough to avoid a transfusion (they are dropping little by little everyday)
-For his PICC line to remain usable so he can avoid sticks

Journeying On,

Update on Ethan (7-17)

Since we began this latest journey with Ethan almost two weeks ago, we’ve longed for the day when we could share good news with all of you.  But today is not that day.  As you probably know, Ethan was admitted to Children’s Hospital on July 5th due to extremely low blood counts.  Although doctors immediately expected Leukemia, a bone marrow biopsy concluded instead that he had Aplastic Anemia (a rare and serious disease that diminishes the bone marrow’s ability to produce stem cells).  And so early last week, Ethan moved to the PICU at Children’s and began Immunosuppressant Therapy… which was supposed to continue for 8 days in the hospital and up to several months at home and in the clinic.

But Saturday morning we learned that some lab worked had come back from Vanderbilt and it indicated that Ethan does not have Aplastic Anemia, but rather a Myelodysplastic Syndrome (or MDS).  Like Aplastic Anemia, Myelodysplastic Syndromes are also bone marrow diseases and so share similar symptoms (bruising, bleeding, etc…) and effects (low red cell, white cell and platelets counts).  Both conditions are rare and even rarer in pediatrics.  And as with Aplastic Anemia, there are different levels of severity of MDS.  In Ethan’s case, the syndrome is serious and life-threatening.  This type of MDS has a very, very high level of probability of turning into Leukemia… more specifically into AML (‘not your everyday Leukemia’ in the words of our doctor).

Because the Immunosuppressant Therapy is not an appropriate treatment for MDS, these medications were stopped Saturday.  Now Ethan’s best chance for a cure is a bone marrow/stem cell transplant.  And so Monday morning we will begin a search for a matched, unrelated donor.  In the meantime, he will be discharged today (Sunday) and be followed by the Children’s Hospital Clinic as we await a donor.  When a donor is found, we’ll be headed to Vanderbilt for several months of treatment (chemotherapy, transplant and recovery).

In case (like Sara and I) you are starting to get a little lost or overwhelmed with the medical jargon, we want to be very clear on one thing: how you can pray for Ethan and our family.  First, please pray that a good, matching donor will be found quickly.  He needs a good match so the bone marrow transplant will take.  He needs a quick match because it is important that he has the transplant before Leukemia develops.  You can also pray that Ethan stays healthy.  His blood counts are still very low and he is very susceptible to infection, especially bacterial infection.  Finally, pray with us for complete healing, whether by medicine or miracle (either would be from our Heavenly Father).  And as you pray for Ethan, please ask the Lord to continue giving his family inexplicable peace and resilient joy.

Again, we cannot thank you enough for your encouragement, love and prayers!
Jared and Sara

Scars and struggles on the way, but with joy our hearts can say, ‘Never once did we ever walk alone. Never once did You leave us on our own.  You are faithful. God you are faithful!’  Matt Redman, ‘Never Once’

Update on Ethan

As many of you probably know, early last week Ethan was admitted to Children’s Hospital and was diagnosed with Aplastic Anemia; a rare disease in which the bone marrow does not produce enough new blood cells.  For example, a biopsy of a healthy child Ethan’s age would indicate about 80-90% healthy cells in the bone marrow.  Ethan’s biopsy showed only about 5%.  Additionally, his body is producing so few new blood cells that his last transfusion lasted less than a week.  And so not only is the condition rare, in Ethan’s case, it is severe.

The best treatment option for Ethan clearly seemed to be a bone marrow transplant from a related, matched donor: his sister, Addison.  But Monday afternoon we learned that her lab work had come back and that she is not a suitable match for a transplant.  This, of course, was very disappointing news, but we quickly moved on to the next treatment option, Immunosuppressant Therapy.  Although there is much we don’t understand about this treatment, we do know that it involves a combination of several strong medicines that may allow his bone marrow to begin producing stem cells once again.  Ethan has been moved to the Pediatric Intensive Care Unit and began the therapy this morning.  If all goes well, the inpatient treatment will last 8 days and then continue at home along with several follow-up visits each week to the hospital clinic.

And so for the moment we are praying that this treatment would be successful.  Although it’s not thought to be a cure for the disease, it could help bring Ethan’s blood counts to more acceptable levels.  If unsuccessful, doctors would either attempt it one more time or move on to an ‘unrelated, matched donor’ from a Donor Registry.  We’re also praying that Ethan would handle the treatment well.  There are many side-effects related to each medication, including allergic reactions, short-term effects (i.e. flu-like symptoms) and long-term effects (i.e. kidney problems, vulnerability to other blood-related diseases).  One of the doctor’s main concerns is the effect this therapy could have on his preexisting hypertension.  Finally, we’re praying that he would be able to keep his PICC line (a type of IV access) throughout his hospital stay and be spared the surgery necessary to place a central-line port.

So as you can tell, there is much happening at the moment with our Little Man.  And as you can imagine, there is much happening in the hearts and minds of Mom and Dad (Grandparents, Aunts and Uncles, etc…).  But through it all, God keeps giving grace.  He gives peace, strength, rest and even joy.  And I am convinced that He has given much on your behalf.  We cannot thank you enough for your encouragement, your support and especially your prayers.  You are faithful friends.

Blessings,
Jared and Sara

(1) Of David. Bless the LORD, O my soul, and all that is within me, bless his holy name! (2) Bless the LORD, O my soul, and forget not all his benefits, (3) who forgives all your iniquity, who heals all your diseases, (4) who redeems your life from the pit, who crowns you with steadfast love and mercy, (5) who satisfies you with good so that your youth is renewed like the eagles. - Psalm 103:1-5

Happy Juice

Before his bone marrow biopsy on Wednesday he got some "happy juice"

He's was feeling pretty good afterwards for about 10 minutes...

then he crashed.

I'm a little biased, but I just love his giggles:)

So thankful for your prayers while we keep waiting!

Journeying On,

Ethan's Story

He delivered us… and he will deliver us.  On him we have set our hope that he will deliver us again.  You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many.  2 Corinthians 1:10-11

Over the last few weeks, we’ve noticed a few things that have caused us to be concerned for Ethan.  There have been bloody noses, bruises that wouldn’t heal and low-grade fevers.  Tuesday, Sara took Ethan to see our pediatrician who did some blood work.  The results showed a low white blood cell count and a dangerously low platelet count.  Ethan was sent immediately to Children’s Hospital for more testing and to be seen by a hematologist/oncologist.  Further testing confirmed Ethan’s low counts and led doctors to suspect Leukemia.  The only way to be certain however, was to perform a bone marrow biopsy. 

To our surprise, the biopsy (performed Wednesday morning) ruled out Leukemia and instead showed Aplastic Anemia.  Aplastic Anemia is a condition in which the bone marrow does not produce healthy cells.  The result is blood that will not clot and an immune system that will not fight off bacteria.  (Interestingly, the cause of the condition is unknown and is not thought to be connected in any way to prematurity).  Although Sara and I were relieved to hear that there is no cancer, we were very concerned to learn that Aplastic Anemia is also considered a life-threatening illness and can be as or even more dangerous than certain types of Leukemia. 

Wednesday evening we spoke with our hematologist/oncologist about initial ‘next steps.’  Without question, the best treatment for Ethan is a bone-marrow transplant from a matching donor.  The best candidate for a match is his sister, Addison.  There’s a 25% chance that she’s a perfect match.  Addison’s blood was tested this afternoon (Thursday) and results are expected to be back early next week.  If she is a match, we will immediately begin pursuing a bone marrow transplant.  If not, the next step would probably be to start Ethan on Immune Suppressant Therapy.  The other possibility if Addison is not a match is to pursue the donor registry.  But at this point, we know little about treatment plan; especially the Suppressant Therapy and the Donor Registry.

And so for now, we ask that you would pray with us that Addison would be a candidate for the bone marrow transplant.  This would seem to put Ethan well on his way to treatment and possibly to a full recovery.  Please also pray that, in the meantime, Ethan would be free of any infection.  His immune system is very weak and he is very vulnerable to illness.  Above all, please pray that God’s will be done and that His name be glorified.  We ask this with great confidence because we have learned first-hand that He is faithful and good and merciful and kind.  He has been faithful.  He will be faithful once again.

Jared and Sara

Baltimore Results

We turned a ten hour trip  into twelve with lots of stops to stretch little legs:)  On Tuesday afternoon we arrived at Kennedy Krieger to meet with a team of therapists and doctors to determine if Ethan and Addison would be good candidates for their feeding clinic.  Our family of four and six others crammed into a normal size exam room where the evaluation took place.  We spent 45 minutes reviewing their medical history and current level of development.  Then they brought in highchairs and watched me do our normal meal routine, which was rather intimidating.  I felt a little insecure trying to feed these two kids with all these professionals watching, but right before we started the Lord reminded my that I am their professional mommy and the meal time went well.  I thought maybe a little too well.  Ethan and Addison ate like champs for the first part of their evaluation, which was making Jared and I a little nervous.  We really wanted them to show their true colors, not eat everything in sight.  After about 5 minutes of joyful eating they began to choke and gag on their food and I feel that we were able to give them a very accurate picture of what feedings look like in our house. 

After the meal time the team left to talk about their recommendations.  While they were gone we cleaned up and tried to entertain two toddlers who had been in the car for over 12 hours and in a tiny room for over 2 hours.  When the team came back in they had unanimously suggest they both participate in the inpatient program.  I now realize that this is a huge answer to prayer, even though I never knew exactly what I was praying for. 

So here are the specs on the inpatient program. 

-The waiting list is 2-4 months (which is shorter than we expected) :)

-They would both be admitted to the hospital and stay in the facility for 6-8 weeks.

-They would share a room that has space for one parent to stay as well.

-They would attend feeding sessions separately 3 times a day, 5 days a week

-Between feedings they would have occupational and speech therapy to help build muscle endurance and desensitize their oral aversions.

There are still lots of unknowns, but we know God has been faithful this far and He will continue to guide us.  I cannot begin to tell you how incredibly humbled I was by this trip.  The gifts we were given, the messages we received saying you were praying and the words of encouragement were literally overwhelming.  I am blown away that the Spirit continues to lay our family on the hearts of faithful prayer warriors and I am so very thankful for you! 

So what's next? More waiting, which means more praying and more trusting.
We're waiting to make sure our insurance will approve us for the inpatient program, which could take about a month.  We're also waiting to receive the okay from our pulmonologist because they want to make sure it's okay for E & A to be in an inpatient environment during RSV season (we see them later this month). Then we're waiting for the phone call that says they have an opening for us:)

The building (we think) where inpatient takes place



It's a beautiful facility

Back in the car...

A little reminder as we left the city....



Journeying On,