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)