"I'm afraid to die but ..."

I realize that many of you have been waiting to hear what we found out in Seattle this time.  It was a long 2 weeks, with a dozen appointments, multiple labs and procedures under anesthesia, and a big case conference at the end of the trip.  I took pages and pages of notes.  It has taken me a few days to decompress, let it all sink in, and catch up on my sleep. There are a lot of details and special concerns regarding Rowan's unique case, but I will do my best to simply sum things up.

For starters, I wanted to thank everyone for your constant support and prayers during all of this.  For those who asked me how they should pray specifically, I shared that I really wanted things to be clear.  I didn't want to struggle with a decision to transplant or not.  I wanted God to make it extremely obvious. I wouldn't say I got exactly what I was asking for, but I do believe I got what I needed.  In the past, the doctors were divided, debating which system of Rowan's we should try to fix first.  Not this time though.  Everyone was on the same page this time...as in all 7 of them!  I met with each specialist once or twice throughout the 2 weeks, and had great informative conversations with each of them individually.  Then, everyone one of them sat in one room at the end of the trip, either physically or via conference call, and went through all of the pros, cons and remaining questions with Rowan and I.  Getting that many powers that be in one room, at one time, all of whom have poured their hearts and souls into testing, researching and trying to find a cure to Rowan's ongoing health issues over the past 2 years, wasn't just like an act of God...it simply was one.  I had a real sense of comfort and peace after the meeting.  Here is what we discussed...

The good news:

1.     We found out that Zoe is not just a 9 out of 10 match, she is a 10 out of 10 match.  This is wonderful news!  You just can't get any better than a 10 out of 10 sibling match.  We no longer need to find 2 donors from the registry.  If we ran into any problems, or if Rowan didn't engraft, they could go back to Zoe again to retrieve more bone marrow cells.  This was the best news of the trip.  Please keep Zoe in your prayers.  She is more than willing to help her brother, but has some anxiety about the process.

2.     The genetic doctor did find a few mitochondrial deletions in Rowan's genome sequencing.  One in particular can be disease causing, but there was so little data on it, that they were unsure if it was a root cause of Rowan's issues or not.  You may remember that they tested my blood as well, prior to the trip.  Well, the geneticist hounded the lab every day, sometimes multiple times a day, and he actually got the information he was looking for, just as I arrived for my appointment with him last week.  I too carry that same mitochondrial deletion.  Since I do not have any of the same health issues that Rowan does, the doctor was able to pretty confidently rule out that specific gene deletion as being a problem for Rowan.  Zoe also carries this gene, but since he feels that he can rule it out as disease causing, this does not take her out of the running to be his marrow donor (which was a concern that some of the doctors were having).

3.     During the endoscopy and colonoscopy they took pictures and biopsies.  Because of Rowan's multiple health issues, the biggest point of contention has been, "What do we fix first, the gut or the bone marrow?"  Well, the GI doctor said that Rowan's gut does not look bad enough right now to be the only cause of Rowan's repeat septic episodes.  He definitely has GI issues still, but he feels that the immune system is the primary defect, not the gut. This also points us in the direction of bone marrow transplant first.


The other news:

1.     Rowan's bone marrow biopsy shows that his cellularity has dropped 20% since his bone marrow biopsy last year.  However, there is no evidence of Leukemia in his working marrow.

2.     Rowan's blood work indicates a significant primary B cell defect, and a mild T cell defect.  His immune system does not work properly.  He has trouble making and maintaining cells that help him fight infections.  This is inherent, meaning that it is not caused by one of his other health issues.  If left untreated, he will continue to fight life threatening infections the rest of his life.

3.     The geneticist does still feel that we are dealing  with a genetic disorder, just one that is currently unknown.  He says that Rowan is so rare, so unique, that he has something that hasn't been discovered or named yet.  Is anyone surprised?  He hasn't stopped looking, but he warns me that we may not find out what Rowan has for years to come.  We joked that it will be called "Rowan syndrome", which is something all of our doctors have said for years:)  The geneticist wants to take Rowan's case before the genetic board and get approval for an even more detailed test, a whole axom study, which will break down his cells even further.  Science has come a very long way, but he still warned me that they can only compare what they already know, and right now they maybe have data on about 30% of the genes.  As they get more children who present like Rowan does, and they can test their genetics, they will hopefully discover mutual findings, which will lead them to know and understand more genetic disorders.  Because of this ongoing scientific research and discovery, the doctors want to bank Rowan's DNA, so that even after his bone marrow is transplanted, they would be able to continue to test his original marrow against new found diseases.  Fascinating, isn't it?


The transplant news:

1.     All of the doctors that we met with seem to agree that now is the time for Rowan to have a bone marrow transplant.  They fear for his life if he continues to have these repeat, life threatening septic infections every few months.  They said that even their sickest kids don't end up in ICU several times a year on pressors, fighting for their life.  Rowan does not mount the appropriate response to infections.  When he goes into the ER with 105+ fevers, fighting bacteria in his blood, his marrow tanks, it does not mount a strong defense.  Despite daily neupogen infusions, and IVIG infusions every 2 weeks, he still continues to battle serious bacterial and yeast infections multiple times a year.

2.     Even the specialists who were against transplant last year, now feel that it is warranted.  They know that they can't fix everything.  But, with Zoe as a 10/10 matched donor, and with all of the in depth research and testing that they have done for the past 2 years since we started traveling there, they feel that they have come to a point where this is the way that we can at least fix something.  Their goal is to "give him more good days".  The hope is that this transplant will fix the blood and bone marrow issues, which will make him healthier overall, which will keep him out of the hospital more, which will hopefully give him a chance to improve in other areas of his health as well.

3.     Seattle Children's Hospital has a clinical trial license to use Treosulfan, a lower toxicity chemo drug, during bone marrow transplants.  Our hospital here at home does not have the ability to use this, which is why we are traveling so far.  Rowan is obviously still at great risk during the transplant process, but this type of chemo will hopefully be one that he can tolerate better.  Seattle Children's Hospital is one of the most experienced hospitals in the country at non-malignant bone marrow transplants.  They do not take this lightly though, and they have not rushed into a decision with Rowan.

4.     The transplant doctor discussed whether or not to do a myeloablative transplant.  Myeloablative means "complete deletion of bone marrow cells", or taking his marrow down to zero.  The risk of not being that aggressive (doing a non-myeloablative transplant) is that Zoe's marrow may not take over, and Rowan's may come back.  There is a better chance of engraftment if we take Rowan's marrow all the way to zero.  However, this also puts him at a much higher risk of fatal infection during the period when he is completely compromised though.  It is a lot to weigh, but the transplant doctor feels that we really don't want to have to do this twice.  He feels like we probably need to be aggressive the first time.  He will be meeting with his colleagues to confer on this, but that was his gut feeling.

5.     The doctors were all very real with us, explaining that Rowan is at increased risk during transplant.  The GI tract is the primary organ that Graft vs Host affects.  He is also at increased risk for fatal infections because of his history of sepsis.  They explained that the bottom line is, "How much risk are we willing to take?" and ask "What other course of action do we have left?"  They feel that we have given it a good try, but now the reward may be worth the risk.  They explained that we may end up losing him during one of these life threatening ICU septic infections if we just continue the way things are right now .

6.     Should Rowan undergo bone marrow transplant there in Seattle, we would need to first take Zoe there for 3 days, for her own medical work up.  Then Rowan would return for an evaluation of his systems, and then he would start his conditioning regimen and chemo.  Zoe would return 2 weeks later to donate her marrow, and it would be transferred to Rowan via infusion.  At that point, day zero, Rowan would be most critical for about 100 days, while Zoe's marrow hopefully begins to fill his body up with healthy marrow.  The doctors did warn us that after Rowan's 6-8 weeks in patient, he would not be allowed to travel further than 30 minutes from the hospital for the next 100 to 120 days.  He would need to be seen in SCCA's clinic several times a week too, and would receive multiple transfusions of blood, platelets, etc, as needed.  After 4-6 months total, if Rowan was doing well, we would be allowed to fly back home to Texas.  I know...it's a long time.


Where we left things:

1.     Based on hematology and immunology, they decided that transplant was indicated.

2.     Based on the GI and genetics findings, they did not find a reason to not transplant, so they also agreed that it was indicated.

3.     When I asked the question (Brian's favorite question to ask doctors:), "Would you do it if it was your child?" They basically said, "With Zoe as a 10/10 match and treosulfan as the chemo, yes."

4.     They will present Rowan's case to the complete Transplant Board at SCCA in December.  This is when the final decision will be made.  If approved, this is when they will begin planning out  his specific regimen.  With all 7 physicians being in such agreement this time, I do not for-see the transplant team disagreeing with them at this point, but we will know for sure next month.

5.     The transplant doctor explained that they like to wait until after the "sick season" for obvious reasons, so he mentioned April or May as a start date.  Rowan however had his own request...June:)  He would like to "play one more soccer season with Coach Conder and the Gruene Dragons" and "do one more play with Mr. Chris at Woodlawn" before moving to Seattle for the hardest half year of his life.  He was sad that he would miss Summer, and especially sad that he wouldn't be celebrating his 10th birthday at home, but he said he would rather do soccer and another play, even more.  I promised him that if this happens, and we move to Seattle in June, we would throw him the biggest, best "9 3/4 birthday/going away/bone marrow transplant" party ever, this May.  And he smiled from ear to ear, thinking of how many people would come help him celebrate that monumental event:)

I know this is a lot of information to digest.  There are some really serious risks involved, but also the potential for some truly amazing improvements to Rowan's quality of life.  I was feeling very conflicted and unashamedly scared while I digested all of this information there in Seattle.  However, I want to leave you with this...Rowan's reply, when I asked him what he thought about it all, (Yes, he was there for every appointment and every meeting, and each doctor looked him in his eyes and asked him what he was thinking/feeling- because as you know, Rowan is a wise old soul, and truly does understand what is going on.) ...

After really thinking about everything that the doctors had discussed, Rowan later told me confidently, back in the hotel room: 

"I'm afraid to die, but I'm also confident that I won't, because I have the power of God on my side.  And he's helped me beat so much already." 

He shared that message with the doctors, and they told him that he was right, that he had the right attitude.  They reassured him that he had so many people rooting for him, confirmed that there was a higher power on his side, and that his faith meant he would be okay no matter what.

What more can you ask for?  A child ready to battle, with a faith that surpasses that of most adults, a team of doctors who both recognize and support that confidence, and a God that we know is in control.

How can you pray now?

1.     For the transplant board meeting in December...they they have clear minds, a good understanding of Rowan's case, and are able to come to a mutually agreed upon decision.

2.     For Zoe...that she feels our compassion and gratitude, that she knows what a hero she is, that she is at peace with her decision to be Rowan's donor, and that her fears and anxieties are washed away with a peace that surpasses all understanding.

3.     For Ian...that his sensitive soul be encouraged, that just because he isn't the donor, or the recipient, he knows that he is still an integral part of this process, and huge support to us all, and the silent rock of our family.

3.     For Rowan...that his child like faith and peace remain with him every day of his life, especially if he undergoes this transplant, that his spirit never falters, that he understands how inspirational he is to so many, especially his own family.

4.     For Brian...he is the head of this household and the sole provider, but he is also "Daddy" to these kids.  He has to balance work and the weight of this extremely difficult personal situation.  Please keep him strong and focused, give him glimpses of hope, not fear or worry, and give him daily laughs with each of his three beautiful children to keep his spirits lifted.

4.     For all of us...that we have open minds and hearts, and learn every lesson that God is teaching us during this trial, through Zoe, Rowan, Ian, the doctors, and everyone we encounter along the way.

5.     For the financial, work and school situations all fall into place should we go to transplant this Summer.  We have great insurance, but here in Texas, Medicaid is Rowan's back-up, covering the co-pays and co-insurance portions that insurance does not pay.  However, in Washington, Rowan will not have his Medicaid back-up, because we are out of state.  For instance, just the GI procedure alone cost us a $250 insurance co-pay last week, plus $30 for each of the many doctor visits, because we were in Washington, not Texas.  As you can imagine, 4-6 months in another state, with travel, housing, food and medical expenses, could become astronomical.  We are researching ways to combat those expenses and trusting that God will provide.  Brian and Zoe will either need to miss work for a portion of this time, or we hope that their jobs will make accommodations, allowing them to continue working in some capacity since it is such a long period of time.  Ian will be entering his 3rd year of Early College High school next year.  We would like him to be able to be with us all in Seattle as much as possible.  This is another reason why a June start would be ideal for the whole family. 

6.     For me personally...I try so hard to keep it all together and to stay organized, but I am human.  This is a HUGE undertaking right now.  Please pray for energy and for a strong mind and body.  I need to be there for Rowan and my entire family, and yes, I understand, for myself too:)

We will definitely keep you all updated, but in the meantime, thank you for the prayers and support.  We should have a final decision and treatment plan after the SCCA transplant board meeting in Seattle in December.  For now, we just need Rowan to stay out of the hospital here at home, get the rest of his body as healthy and strong as possible, and hopefully we can all mirror his faith and strength as closely as we can.   Amen!

 (Thank you Dr. A for this treasured handmade gift!  It has brought Rowan such comfort.)