"Our Little Trooper"

"Our Little Trooper"
"Let me live, that I may praise you!" Psalm 119:175

Friday, October 21, 2016

Day +2 (again): "There is always something good...you just have to look for it."

As most of you now know, Rowan's changing mental status was first thought to be a result of enlarged ventricles of his brain due to a shunt malfunction.  However, once that was corrected, his altered mental status remained the same. Then, his blood gases and electrolytes indicated that he was experiencing metabolic acidosis and a severe electrolyte imbalance, and they thought that was the reason for him being unresponsive.  However, he started dialysis, corrected the acidosis, and still remained unresponsive.  Last night, we got more bad news, but possibly, finally, the true explanation for his incapacitation.  The CSF fluid from his lumbar puncture showed that he had an active CMV virus. He has been diagnosed with CMV encephalitis...a serious viral infection in his brain.



The first words out of the doctors mouth were, "we found something, but it is so rare, we aren't sure what to do yet".  She went on to explain that no one, and I mean NOONE, had ever seen a case like Rowan's.  Not here at Seattle Children's, not here in Washington, not here in the United States, not reported anywhere in the world.  They have called the top CMV specialists in the US and abroad.  I have also made phone calls back home, to doctors who made phone calls to top CMV specialists that they know as well.  It is just simply unprecedented. 

See, Rowan had been exposed to CMV virus prior to our arrival for transplant.  Most all of us have, but for you and I, that would not be a big deal.  We can carry CMV and never have a problem.  Immunocompromised patients are the ones who have a hard time fighting CMV, and many transplant patients do.  But, they typically find it in their blood stream.  Since they knew Rowan had antibodies to it, he has been treated with an antiviral throughout his entire 3 month hospital stay so far.  They even tested his blood repeatedly to make sure he did not have the virus reactivate.  In all of the blood tests, he never showed signs of the virus popping up. 

Then, when the CT scan showed enlarged ventricles, they did a spinal tap to check his intracranial pressures.  Routine procedure is to then send the fluid off for viral and bacterial testing.  They did so, but were not expecting anything worrisome to come back.  Last night, it did.  Here is where the rare part comes in.  People do get CMV virus, but healthy people can fight it no problem.  Transplant patients do get CMV virus too, but in their blood and they respond well to treatment for the most part.  Rowan was being treated preemptively for CMV virus as a precaution, had no indication of it rising in his bloodstream, but apparently it compartmentalized in his cerebral spinal fluid instead.  That caused a severe viral infection in his brain, which over the course of just 5 days, took him from having fevers and being tired, to experiencing confusion, delirium, and finally into a completely non-responsive coma.



As the doctors research how to treat this infection in the brain of Rowan: a young child, who is in the very beginning days of a second bone marrow transplant, they discovered...nobody really knows.  There are no known cases like Rowan.  There is no data.  There are no case studies.  There are no recommendations that can be based on fact.  Kids just simply do not contract CMV in the CSF, especially with no evidence of it in their bloodstream for 3 months straight.

Rowan has always been rare, unique, complicated, special, etc.  We are used to that.  Sometimes it's cool...but sometimes it is not a consolation.  Real talk: At first, I felt defeated.  I turned and walked out of the room.  It was the first time this entire hospitalization that I walked out on a doctor.  There is just simply only so much one person can take.  It was too many complications, too many days in a row.  And to tell me, "we don't know yet what to do"...I just couldn't...

The good news...I regrouped, the doctors rallied, they called specialists all over the country and abroad, I prayed, I apologized for leaving, they apologized for not having all the answers, and we all moved forward, focusing on Rowan.  And within hours we were all on the same page as to how we can best handle this extremely untimely, difficult situation.  We now have a plan, and everyone, and I do mean everyone, was in agreement.  It won't be easy, it won't be quick, it is not a perfect plan, but it is a plan that is doable, given the current disease process that Rowan has, as well as considering the current stage of his transplant process. 

Instead of continuing to cry and ask "are you serious?", "another bump in the road?", "what more can go wrong?" etc, I did what I knew Rowan would want me to do...I looked for the positive.  As he always says, "There is always something good...you just have to look for it".  Thank you Rowan for that lesson and thank you God for allowing me to find the good.

#1.   It is good that we discovered the problem.  And guess what?  It was by what would seem like an accident or a mistake (but we know better).  If Rowan's shunt would not have malfunctioned, we would not have done the lumbar puncture when we did.  We did the LP so we could see what his ICPs were.  Then as a matter of standard practice, went ahead and sent off the extra CSF fluid for testing.  That is where the virus was found.  Had the shunt not have malfunctioned, it could have been days before anyone tested CSF fluid on him, and he could have deteriorated even further.  SO, it was good that his shunt malfunctioned, so we could find this virus in his brain.

#2.   It is good that one of Rowan's life goals is to help doctors improve medical science. More than a month ago, when we learned that the first transplant failed, Rowan told one of the doctors, "It's ok, just think of how much better doctors you are going to be when you're done with me.  If you can fix me, you will be able to fix anybody!"  It sounds funny, but he didn't mean it arrogantly, he meant it sincerely.  He knows how complicated he is, and instead of feeling sorry for himself, I just love how he felt proud of that fact instead.  He was happy to sacrifice all of his pain and suffering, if it meant that the doctors would be able to "fix" more patients.  Fast forward to this current situation and I see that prophecy being realized.  Before yesterday, there were no known cases of a child with CMV in their CSF (not their blood) causing viral meningitis.  But guess what, WHEN Rowan overcomes this, WHEN the doctors do treat him, WHEN God does heal him, there will be!  There will be written in a medical journal somewhere, "10 year old boy, CMV in CSF, treated with....." etc.  Then Rowan will have been right, he will have made them better doctors:).  The case will certainly make history, and the doctors will have improved their knowledge of how to treat any future patients who may contract this awful viral encephalitis, and hopefully lives will be saved. I take that as another positive.  Not because I am happy to have him be the pioneer of this unfortunate, serious medical issue, but because it will help others in the future.  That is the story of Rowan's life.  Always, and I do mean always... thinking of others, and willing to take the pain for others.




This is by no means going to be an easy road.  This virus is slow to grow, but also slow to eradicate.  His situation is further complicated by the fact that he is just 2 days post his second bone marrow transplant within a 3 month period.  There are serious potential threats to his brain and multiple other organs in his body, as well as his vision.  There is the risk of his transplant not engrafting or engraftment being delayed.  But we cannot focus on those risks.  We cannot dwell on our disappointment or wallow in self pity...it will not benefit us in any way, it will not benefit anyone at all.  So, instead, we are choosing to let this "hiccup" be a sign of how big God is, how many mountains he can move, how many other lives can be saved, and how you can turn ANY negative into a positive, if you just try.  Thank you Rowan, for teaching us to think that way.






14 comments:

  1. Amazing...all my love and prayers to you, and to your precious boy. The first thing I do in the morning is check for an update. God is good ALL the time.

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  2. My daughter has had viral meningitis twice with encephalitis and optic nueritis. The only thing that worked for her was steriods. I pray the doctors find a way to treat Rowan. Continued prayers for Rowan and your family!

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  3. Oh my God, God bless you, and heal Rowan such a beautiful story.

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  4. Your spirit is unbreakable Rowan.I am a mom with 4 children and i always tell them how strong you are and my 4 year old daughter always says "God is gonna make him better" and he will. Mr and Mrs.Windham don't lose faith ever!! Faith is to believe in things we can't see so although we can't see the miracles work they are working all around us.Keep up the good work mom and dad and know you are doing all u can until our little hero is playing his song with the therapist again.

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  5. We love you Rowan and are praying every day for you.

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  6. Sending lots and lots and lots of prayers, hugs and love for Rowan, his family, and all the doctors and nurses caring for this sweet,sweet boy!

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  7. Miracles do happen and teaching happens. I live with one, my husband. As noted before, we were friends with Brian's parents before they had children. We played with Bruce and Brian as infants and toddlers. Gene had a saddle embolism in his left lung that caused an infarction in the lower lobe of his right lung. In the hospital he was given large doses of heperian to dissolve. The infarction displayed as pneumonia in all the scans and xrays. On about the third day in the hospital the infarction ruptured. He bled out into his chest cavity all day long. The doctors continued to treat for pneumonia. Around 9:20 pm Gene had no room left in his chest for his lungs or heart to function. He went into coronary arrest. Thank God for the quick work of the health care staff. And the young nurse's aid that pulled the cord to bring all the help to the room. Hearing words like if he makes it through the night there is a chance, if he makes it through the next 24 hours.... The young intern told us that there was no record of anyone surviving this. I know you know that feeling. While sitting in the waiting room during those tenuous first days a random person walked up to me. She told me that my loved one needing healing. Then she told me to place my hands on the area of his damage and claim the words from Isaiah 53:3 ...and by his stripes we are healed. This caught me really off guard but being a person of faith I did it. Through the work of all the health professionals and his decision to choose to push through the pain, Gene is sitting across the room from me. That was in 2007. I call him my Lazarus and yes, miracles do happen. Praying for your whole family and one more miracle.

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  8. He is the strongest little boy in the world. My heart aches for all of you. Sending prayers from New Mexico.

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  9. Rowan is such a beautiful blessing to us all! We are all so lucky to have gotten to know you and Rowan even if it is through the Internet! We are all learning what trust, love and faith truly means. Rowan, you are such a fighter and I love all your logic in life! You are beautiful inside and out. Thank you for letting us all be a part of your life and allowing us to continue on with our prayers, love and happy thoughts! Your family is so inspiring to us and we all love you guys!! Continue fighting little man!! I hope to meet you and give you the biggest hug ever some day!!

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  10. Prays coming your way!!! Thank you for the positive, Thank you for sharing. In true Rowan fashion I know he is smiling on the inside. An amazing young man with more Godly insight than most of us can learn in a lifetime. Praying he is spending time with his friends keeping him calm and occupied as his body heals. I know his heavenly cheering team is supporting him during this time.

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  11. There are just no words that adequately describe what an amazing child Rowan is. As his parents you must have planted the seeds that grew into this remarkable young man. I pray every day for healing and strength for all if you.

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  12. God bless you all and heal Rowan

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  13. Praying for you all.

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