Day +24: "Just look for the positive Mommy."

After rounds this morning, I was a little frustrated with how things are going currently.  Rowan's kidney biopsy was 9 days ago.  That is when he developed the internal bleeding that caused the two large hematomas to develop in his abdomen.  He has been in an extreme amount of pain ever since then.  He was already on a pca pain pump for typhlitis (the infection and thickening of his colon), but since the kidney biopsy he has used it so much more.  They have increased the constant drip again and again, increased the dose that he can give himself every six minutes, and the dose the nurses can bolus him 3 times an hour.  I am tired of seeing him in pain, and I dislike him requiring so much dilaudid.  The pain doctor felt like interventional radiology or the surgeons may need to intervene soon, since it has been so long.  I agreed.  So, I asked if they could consult with them again, to see if we could get another ultrasound and find out if any of the blood is being reabsorbed yet. 

Unfortunately, there is nothing they feel comfortable doing surgically though.  They don't want to risk causing more bleeding, or risk him developing an infection, if they put in drain tubes or open him up to clean out the blood.  I understand, I really do, but that doesn't mean it's easy to hear "this is just going to take time."  I'm not mad at any of the doctors.  They are doing what is best, and safest for Rowan.  It just made me feel a little helpless though.

His little tummy is so distended.  First from the hematomas, and second from the excess fluid he has on him right now.  His abdomen looks like it's going to pop.  It is heartbreaking to watch him move around in the bed when he looks like this.

Rowan could tell that I was disappointed that there was nothing else that could be done right now.  He could see that I teared up a bit at the thought of 2-3 more weeks (or more) of him in this pain.  He didn't get upset himself.  He didn't cry thinking about the pain he would continue to endure. Nope, not Rowan.  Instead, Rowan took that opportunity to console me.  He wiped my tears and encouraged me:

"Just look for the positive Mommy."

"I've already dealt with this for almost 2 weeks, I can handle it for a few more."

"It just means we get to spend more time together."

"At least I won't need more anesthesia."

"They just don't want to put me through any risky surgeries to fix it right now."

Oh Rowan. 
Dear sweet Rowan. 
I don't know what I'd do if you weren't the way you are. 
Your positive attitude and selflessness are beyond words.

Thank you...
from the bottom of my heart.

You do more to get me through all this, than I do for you.

And ok, I will remember to look for the positives Rowan.
There are many, as you so kindly reminded me.

Day +20: One day at a time...one step at a time...

Some people have mentioned that not everyone "does Facebook", so they haven't been seeing my daily updates on Rowan's transplant progress.  So, I thought I would do a summary update here, to bring everyone up to speed on what all has happened, where we are right now and what we have left to do.

July 23rd Rowan was admitted into Seattle Children's Hospital's Cancer Care Unit to begin treatment.

He is the very 1st patient receiving this special protocol, 3 part, haplo transplant, with me as his donor.  Here he is with the doctor who wrote the protocol, on his first night in the hospital.

July 24th through August 3rd Rowan underwent a very intense 11 day chemo regimen.  He flew through it remarkably well.  He even ran 11 laps in 11 minutes after his last chemo dose. What a champ!

August 4th Rowan received part 1 of the transplant, my total nucleated blood cells.

August 5th Rowan received part 2 of the transplant, my t-cell depleted stem cells.

 

August 7th Rowan started losing his hair.

August 13th He let me go ahead and shave what was left of it.  (They say bald is beautiful, but it is especially beautiful on Rowan.)

Rowan was scheduled to receive part 3 of the transplant this Thursday, August 25th, my genetically modified, targeted t-cells (which have been away in a lab for 30+ days now being processed).  This portion of the transplant is currently on hold though, until a few more criteria are met, due to a few complications Rowan has experienced...

Let me start by saying that complications are common during transplant. The body is very immunocompromised, so it's hard to protect them from viruses and infections. They keep patients on antiviral, antifungal and antibiotic coverage as a precaution. Rowan still seemed to catch a little bit of everything.  So, over the course of the past few weeks, he had to have many changes and additions made to that list, as they tried to target his specific infections and viruses.

On top of the very typical fever, fatigue and mucositis from the chemo, which causes inflammation/irritation/bleeding/sores throughout their gi tract, from his mouth to his bottom inside, Rowan also has battled the following:

• CMV virus was detected in his blood.
• He got very aggressive cellulitis around both his g-tube and j-tube.
• He started having blood in his urine.
• An antibiotic resistant bacteria was found in his stool.
• He developed typhlitis, an infection in his colon.  They had to switch all of his meds to IV only, stop all feeds, and vent his stomach to gravity, draining it to give his colon rest.
• He has had severe headaches, more days than not.
• Rowan has had a hard time keeping his 02 sats up, so has required oxygen for at least a part of the day, most days.
• Rowan had a fine rash all over his body for 2 weeks early on, from his neck to his toes.
• After a few days of his skin clearing up, he then developed a GVHD rash all over his body.  It itches, but it also makes his skin extremely sensitive to the touch.
• Ultrasound and CT scans showed quite enlarged kidneys, that were abnormal in appearance too, with stripy lesions in patches all over his kidneys.
• Rowan has been on a dilaudid pain pump for 2 weeks now, with the dosing going up nearly every day.  He gets a constant drip, can push the button when he needs to and can ask the nurse for a larger bolus when the pca pump dose just isn't touching his pain.
• He fought very high fevers for 2 straight weeks, over 105 degrees at times, with rigors, very high heart rates and low blood pressures at times.  He was placed on a cooling blanket for most of those days, to help bring his body temperature down.
• He had a "rapid response" initiated in the middle of the night one night, due to extremely low blood pressures, with nearly a dozen emergency personnel rushing to his room to bring him back up.
• Following his kidney biopsy, where they removed 6 small samples from his left kidney, Rowan developed internal bleeding.  He now has 2 large hematomas, one surrounding his kidney and one in the peritoneum.  They are extremely painful.  They are trying to let his body reabsorb them, because they don't want to risk infection or further bleeding by inserting drain tubes or surgically cleaning them out.

All of these complications resulted in lots of additional medical specialty teams being added to Rowan's daily rounds.  Besides the Bone Marrow Transplant Team, he has also been followed by Infectious Disease, Surgical, Wound Care, Nephrology, Dermatology, Pain Management, and the Risk Team (PICU nurses who monitor in case he needs to be transferred to ICU).  Each of these teams arrives in groups of 3 to as many as 8 or 9, rounding once or twice a day to check on his progress and offer their recommendations to his primary team, the BMT team.  On a given day that means that anywhere from 25-45 different staff members come in his room, on top of the nurses, nurse practitioners, certified nurse assistants and hospitalists.  It sounds overwhelming, I know, but it also means that they have many great minds pulling together to fight for what is best for Rowan.  I myself, find comfort in that.

Rowan has needed many diagnostic tests done to help them figure out the fevers, low sats, abdominal pain, headaches, etc.  On top of the given twice daily labs (sometimes more), Rowan has had repeat chest x-rays, multiple ultrasounds, 3 CT scans, ekg, eeg, echo, bone marrow biopsy, lumbar puncture, kidney biopsy, etc.  He has received nearly a dozen transfusions of red cells and more than that of platelets.  He has also received countless doses of IV Lasix to help remove excess fluid (some days he has been as much as 9-10 pounds heavier from fluid imbalance.)

Wow! When I type it all up like this, it sounds like too much for one 10 year old little boy to handle at once, but if you know Rowan, he is STILL handling this like a champ!  He thanks every single nurse or doctor as they leave the room...every time.  He holds my face in his little hand and rubs my cheek when he is feeling his worst, and has told me "this has to be so hard on you".  Hard on me.  He is worried about how hard it is on ME?  It is humbling to say the least.  He still dedicates every day to a different friend of his, either one who is currently fighting, one who has beat their disease, or to one of his special friends in heaven.  And he still gives me at least one sweet Rowan smile a day, no matter how bad he is feeling.  When he started losing his hair, his only worry was that he felt bad because they had just cleaned the floors, and now his hair messed it all up.  I'm serious.  He has been the most selfless, most gracious, most patient, most loving child the doctors and nurses say they have ever met.  He writes thank you cards to his nurses and CNAs each day, and to some of the doctors as well.  More than a few tears have been shed over those.  There are nurses begging, bribing and fighting over being assigned to his room.  They adore him.  And I have never been more proud of him.

 

My heart breaks to see him go through all of this, but it also bursts to see how he handles himself.  He has been an absolute angel.

Today is Day +20 (post-transplant), he has been in the hospital for 32 days straight.  He will be in for a few more weeks at least, and here in Seattle for a few more months.  We are taking each one of those days one day at a time...

one step at a time...

and getting by with a little help from his friends...

Day +14: Saying goodbye to Dad and Ian..."but just for a little bit".

Rowan and I left Texas for Seattle 49 days ago. We have been in the hospital now for 27 days now so far.  Luckily, Brian and Ian were able to be here with us for the past 30 days, and Zoe visited for a little bit too.  It was hard watching Zoe leave to go back home, and today Brian and Ian left to do the same.  Ian starts school next week, and Brian needs to get back to work.  Rowan and I will still have 3-4 months here though.  It won't be easy, being 2000+ miles away again, but we have to do what we have to do.  One thing is for sure, we made lots of memories while we were all here together, and we can't wait to make many, many more once Rowan is healthy, strong, and we are all back home in Texas, together again.

Brian and Ian have been awesome helpers.  I stay bedside 24-7 with Rowan, and they come visit every day.  But more than that, they bring me food, take our laundry, bring it back washed and folded, play Legos and MineCraft with Rowan every day, give Rowan a break from me:), etc.  And Ian accompanied me on some very important trips to Seattle Cancer Alliance: to get my central line put in, to receive several of my gcsf shots, and while I had peripheral blood stem cells collected for Rowan.  Brian stayed with Rowan during those visits, and Ian came with me, kept me company, and played Sudoku with me. 

Here are some of my favorite pictures from their time up here with us...

 

I'll even miss watching them sleep...

Today, they went home.  They gave Rowan a few more things to remind him of them, and they gave him lots of hugs and kisses.  Without a doubt we will miss them, just as we have missed Zoe, but I am so proud of how well our family has dealt with all of this. And I know, we can get through the rest of it too.