Seattle Trip Number Three... Part 2: "The Fun Stuff"

While we were there in Seattle, aside from all the doctor's appointments, we did get to have some fun too.  Since they cancelled his in-patient motility testing, we had 2 days off during the middle of the week, and we also had time on the weekend, after all of our appointments.  Here are some pictures of the adventures we fit in...

Easter away from home wasn't so bad after all, since the Easter Bunny found out where Rowan would be, decorated his hotel room, and left him an Easter Basket filled with soccer ball eggs and iron man eggs:)

Hotel Deca made it extra special as well, with an egg hunt in the lobby, just for Rowan.

We did have to miss Church unfortunately.  The hotel staff was kind and thoughtful enough to print us local Easter service times, but since Rowan had to go to the hospital early Easter morning, we weren't able to make any of them.  He and I still made sure to talk about what Easter is truly all about though, and Rowan said he wore one of his special crosses that day because it reminded him about Jesus giving his life for us.

We had some wonderful meals while we were in Seattle, and Rowan was able to find lots and lots of yummy french fries and hash browns.  He and I had lots of fun, on our little "dates" alone, especially at our new favorite Greek restaurant Costa's

(No, he did not come close to eating all of these hashbrowns:)

(Yes, we both kept ordering the same thing...but it was so good!)

(He was such an entertaining date.  He can have fun, even with his own feeding tubes:)

Rowan and I met an old friend of mine for dinner one night and walked around at Alki Beach.  It was so pretty.  Rowan said he didn't even know there was sand in Seattle, so he really enjoyed that.  He wanted a frisbee or a football, but it was Easter Sunday and all of the stores were closed.  Next time we go back, I promised to bring him back to that beach with something fun to throw:)

My brother in law, sister in law and nephew were spending their Spring Break in Portland, so they took a train to Seattle to spend our 2 days off with us.  They live in LA now, and we hadn't seen each other in a very long time, so that was a real treat.  Rowan and Preston were so cute walking together, everywhere we went.  We visited Pike Place Market and the EMP Museum with them, and had a lot of fun.

The EMP Museum had the coolest Star Wars Costume Exhibit...with the REAL costumes from the movies! Very cool.

They also had several music exhibits and art pieces, as well as an Indie video game design exhibit...

And Rowan caught one of his favorite songs by Adam Levine from Maroon 5 on a HUGE screen.

Unfortunately all of the flashing bright lights really got to Rowan though, especially in the Star Wars Exhibit Entrance, and they caused him to start having a seizure.  Thankfully, Uncle Shannon carried him down the steps and out of the exhibit.  It took Rowan a while to calm down, and he begged to leave, saying "the lights are just too much."

Once we left, he was just fine. And it was so great for these two cousins to get to hang out together.  It had been way, way too long!

(Thanks for the ginormous jaw-breaker Preston.)

(One of my favorites...above)

(We love you Preston!)

And we love you Seattle...

As you can see, despite all of the doctor appointments, we did our best to spend as much time as possible making memories along the way:)

Two more of our bigger adventures need posts of their very own, so look out for those soon!

Coming Soon:

Part 3: "Super Heroes at the Museum of Flight!"

and Part 4: "More Big-Footing!

Seattle Trip Number Three... Part 1: "The Medical Update"

Thank you everyone for waiting so patiently for me to post the medical update from the Seattle Children's Hospital trip that we just returned from.  It is a lot to take in as always, and to process ourselves as a family, plus we had a lot of appointments as soon as we returned here to Texas too, but I think I am finally ready to summarize the visit for you all :)

First let me answer the question I know is at the forefront of everyone's mind: No, Rowan was not medically cleared for bone marrow transplant at this time.  They are still too concerned with his gi health.  We did however, meet with 2 new specialists who have given us hope that they can help get him to that point, or to help better diagnose him genetically, which will help them know how to treat him or how to approach transplant in a way that is safest for him.  So, here is what we found out and what we will be doing for the next few months.

1.     First, we met with an intestinal failure/motility specialist.

Originally, this doctor was supposed to have Rowan admitted for a couple of days while we were there, for some highly sensitive motility testing that would test the nerves and muscles all along his gi tract, to see which portions of his intestines work and which sections do not.  After reading about Rowan's past scopes though and his chronic neutrapenia, she decided the test was way too risky though.  She ran the risk of perforating or puncturing the lining of his intestines, which could cause immediate sepsis and even death.  She told me she was not willing to take that risk just for some information.  I have to say, I agreed and it gave me great confidence in her as well.  She definitely had Rowan's health and safety first.  If this is what she does, and how she makes her money, and she was saying no, that says a lot.

As we first started to talk, she initially thought that maybe they should do the bone marrow transplant first, because it would actually help his gut health too.  After going over his whole medical history though, she came up with three things that she felt we could try first, to get his gi health in a better place.  She will be discussing the three changes with our gi doctor back home, and we will hopefully be implementing them soon, and see a change is his gi health.  One of them is a new medicine to help with gastric emptying, the second is to begin Remicaid infusions (often used for Crohn's Disease) to help heal his intestines, and the third is to have surgery to have a jejunostomy.  Unfortunately, Rowan cannot keep a gj in (we have tried multiple times in the past), and his g-tube feeds are not as successful as they need to be.  So, it is her hope that by healing the intestines, moving the feeds through his system better, and bypassing his stomach, feeding into the intestines (through the j- tube), that we will see progress in feeds and an improvement in his gi health.  Rowan's anatomy is such that this surgery will require a general surgeon to pull a loop of bowel out, closer to the wall of his abdomen, and have the j-tube placed into it. Please pray that we can get this all ordered and scheduled soon, and that his counts come up high enough to protect him during the surgery.

2.     Second, we met with the head of Seattle's biochemical genetics department.

As we first talked, he initially wasn't sure how much he would be able to find or do for Rowan.  However, once again, after going over his complete medical history, he said that he had changed his mind completely.  He said that Rowan has one of the most "impressive" histories he has ever seen, and that given the number of systems affected, and the extent of his compromised health, he felt he could justify three of the most in depth genetic tests available.  He felt that Rowan was one of the most unique patients he had ever seen, with some prior results that he had never seen in his entire career. Because of all of this, he just didn't feel that there was a way that one child could have so many things wrong and there not be some sort of greater underlying diagnosis.  Shwachman Diamond only covers a few of Rowan's health issues, so he wants to expand our scope.  This doctor thinks he should be able to find more answers by casting this larger net.  Now, these tests are very expensive, hard to get approved by insurance, and take a long time to process.  Please be praying that insurance will cover them, and that we do get some answers, or at least clues from the tests.  He went ahead and banked DNA from both Rowan and myself while we were there, and will start the testing as soon as they find out about the insurance decision.  Then, it will take about four months for the results to come back.  It is his hope that these tests will give him some clues about Rowan's genetic make-up that will help them better treat him, or best prepare for his bone marrow transplant.  He wants Rowan back this Summer to go over the results of the genetic testing.

3.     Third, we met with the hematologist/bone marrow failure specialist.

As always, she is so thoughtful and thorough, and we truly feel that we are in great hands with her and the rest of the team of physicians that she has assembled for Rowan.  She is still hopeful that they can better Rowan's gut health, either in an effort to cut down on his infections and prolong transplant, or to better prepare him to receive the transplant soon.  She did insist that we boost Rowan's neupogen and ivig regimen before he goes in for the gi surgery, to best protect him from the risks of surgery related infections and/or sepsis.  She also ordered some more lab work while we were there, and wants him to return for his annual bone marrow biopsy this Summer.

4.     Fourth, we met with the immunology specialist.

Again, we just love this doctor as well.  She let me know that she couldn't be happier about where Rowan's igG levels have been, since we started the increased dose and the increased frequency of ivig infusions.  However, she does not like that these higher than normal levels are still not preventing him from getting sick.  She wants Rowan to receive Synagis this coming year before RSV season, since he got RSV this year.  He received Synagis as an infant, but we stopped once he got older.  She also said that she has done what she can to help get his immune system up, and that if these infections keep recurring, and the gi changes do not cause marked improvements, that she is pushing for the bone marrow transplant sooner than later.  At the end of our appointment she let me know that she does not want to still be sitting in an office talking about this net year.  She did order some repeat labs to check his other immuno-globulin levels and will see us back this Summer as well.

5.     Finally, Rowan had lots and lots of labwork : blood taken and urinalysis done.

Some of the results are already back, some will take days or weeks, and as I mentioned, the genetic tests will take months.  The only immediate results we got were that he was anemic, and that he had too many immature red blood cells.  This is all likely from the chronic gi bleeding that Rowan has.  Thankfully, his neutrophils had come up while we were there (with the increased daily neupogen that she put us on while we were traveling), but the labs from yesterday in clinic back here at home showed that he was neutropenic again. Likewise, the test they did for yeast antibodies in his blood appeared normal there, but once we returned home to Texas, yesterday's fungitell test shows that it is still over 3 times the acceptable limit.  We will continue to get weekly labs, checking his blood counts, metabolic panel, liver function, iron, igG, and fungitell levels.

If I had to summarize things, I would say that all in all it was a good trip.  The general consensus was that they were all very happy that we have Zoe as a sibling match, as that is often half the battle.  It was of course unfortunate that the gi testing had to be cancelled, but it was for Rowan's safety.  We love and trust all of the new doctors, as well as the ones we have seen on our two previous trips.  We look forward to trying the new gi suggestions, and hope they make a difference.  We cannot wait to get the genetics results back, to see if they can help us "figure out" this kid's unique health issues and give him a final diagnosis.  While we may not have come home with a decision or exact timeline for transplant, we did come home with the comfort of knowing that these doctors are working together, trying a few more things, testing everything possible, and that they will then make the best, most informed decision for Rowan.  It is my hope that we will be able to see a difference in the gi issues by August, which is when we need to return to Seattle for his bone marrow biopsy and for the results of the genetic tests.  So, hopefully, August will be our target date for a transplant decision.  We will be hoping and praying that they will feel he is transplant ready by then, or that they have figured out something else to help him have a better prognosis and quality of life, without the risk of these life threatening septic infections that plague him.

Thank you for your continued support.  We couldn't do all this without your constant prayers and uplifting encouragement.  Thank you to Lorraine Patterson for setting up the account for Rowan's medical bills and travel expenses, and to everyone who donated to Rowan's Medical Go Fund Me, thank you from the bottom of our hearts.  Since this was our third trip there in the past 12 months, and we now know we will be going back again very soon, your overwhelming support was a God-send and so greatly appreciated!  

Please be praying for Rowan's health in the interim, for meaningful test results, expedited open communication between our doctors here and in Seattle, a safe infection free gi surgery, and clarity of minds as they make the final decisions by this Summer. 

 Thank you!

"Each of us"...

Rowan shared something with me recently, something he wanted me to tell a friend of ours, something that I think could actually help countless others as well.  This friend and her husband are dealing with a horrible tragedy in their family…the recent loss of their beautiful daughter on the day she was born.  I was struggling deeply with how to help them, and then Rowan shared this message... words which I believe are actually “His” words.  Let me explain…

One night, several weeks ago, I was texting my sweet friend who had just lost her daughter at birth. I was crying and Rowan asked me why.  I told him who I was talking to and he said, “I feel so bad for them.”  I told him that I did too, but that I didn't know what to say to help him through this.  I asked Rowan what he thought might help.  He told me he would go to sleep and talk to God about it, and that he would let me know in the morning.  I thought he would forget by morning, but he didn't.  He woke up the next morning and told me right away...saying:

“I know what will help Mom.  Tell them that God doesn’t have all of us in His hands, He has each of us in his hands. Like, I saw her in God’s two hands like a baby bird. I think they will like to know that.  He knows all about her, he knows her name, he is holding her in His two hands in Heaven, and she is ok.”  

Then he told me that I should tell Lorraine, Stephanie, Jen and Laura that too, that God holds each one of their daughters (Chrissie, Jordan, Jalene, & Avery), one at a time, in His two hands.  I was blown away.  What a sweet, profound vision. And it really is a wonderful thought…to know that she is not forgotten, not just another number…she is important, personally known by God, cared for by Him and held in His very own two hands. 

Fast forward, to this past week…I asked Rowan to paint a picture of what he saw when he slept and thought about her, and to write what it meant to him.  Rowan did just that.  Then, he asked me for her full name, and he wrote her initials on the painting by the baby bird, signed it with his name, with a heart with a cross on it, and angel wings.  We sent the painting to our friends, and I spoke with her about it tonight.  She gave me her permission to share these photos and this story.  Here are pictures of Rowan first drawing this beautiful piece of art, a pure piece of his heart...and then him painting it with care.  

He took such care, paying attention to every detail...

...and wrote out the message as neatly as he could...

...then came the painting, his favorite part...

The end result, is so sweet, yet so powerful...

I get choked up reading it every single time, because I am in awe of how this little boy could come up with such a poignant sentence, about dealing with grief...at 8 years old.  I could never come up with a better one on my own.  I've already prayed that this will help our dear friends heal, that it will give them comforting visions of their baby girl literally in God's hands, that every time they see a little bird, they will have visions of this message from Rowan and have peace.  Now, I am also praying that it will help others who are grieving the loss of loved ones too, especially their children.  Please share this message with anyone in your life who may need to read it.  I think it's too important, not to share.

And please keep our dear friends in your prayers...

In Memory of:

...and thank you God for giving Rowan the open heart and pure child-like faith to hear you, so that he can give us these glimpses of heaven.