First Week Back in London Hospital: Totally Uneventful

Felix eight monthsI am happy to give you a totally boring update.

Our first week back in London hospital was completely uneventful.

Felix is doing well. His neutrophils (white blood cells) are coming down from the chemo which is exactly what we wanted them to do. He isn’t exhibiting any negative effects, though. He’s his usual happy self. Full of energy and smiles. He LOVES to play in his Exersaucer. He loves to chew on things, too, since his second tooth popped through.

Our second stay here is entirely different from the first one.

Most importantly, we feel hopeful. We have lots of hope that Felix will overcome this and eventually come home. There’s no immediate fear of him dying. Our stay isn’t indefinite, either. If all goes well, it’s just a matter of  time (hopefully only another three weeks) before we are headed back home with our sweet boy.

And this time around, we were prepared. We brought everything we needed for a comfortable stay. (Our first time around, we showed up with one change of clothes and our toothbrushes. This time, we brought suitcases full of clothes. We have a laptop, iPod, knitting and crocheting supplies, books, etc).

Moreover, everything is familiar. We know exactly where to go to do our laundry or get a snack. We know how to get wifi on our mobile devices. We know all the surrounding stores. We understand the nurses’ shift changes and we’re familiar with the hospital equipment (we even know how to turn down the volume on his IV pump). We know our doctors. We know whom to ask for toys for Felix. Knowing all these things, and being familiar with our surroundings, makes life so much less stressful. We know what to expect.

So these days we’re just sitting around and waiting. We feed and bathe our baby. (He’s finally getting the hang of purees!) I’m learning how to knit. We’re watching the last two seasons of The Office.

knitting

We’ve already seen Lydia four times in the last week. We’ve had an impromptu picnic on the grocery store lawn and taken a walk at the marsh. We (unsuccessfully) managed a couple of her epic meltdowns. Just like old times.

Life is okay. We’re so full of gratitude.

Thank you, everyone. For your prayers, your financial support, your words of encouragement. All of it. It means so much to us.

Gene Therapy in LA: Days 3-6 (And Heading Home)

gene therapy - before transplantI’ve been sharing our story of taking Felix to Los Angeles to receive gene therapy, an experimental therapy for SCID-ADA. I explain gene therapy here. The first three days can be found here.

When I left off, Felix had just received his dose of chemo (busulfan), and was just recovering from the pain of the bone marrow harvest.

Day 3 Continued (Post-Chemo)

Felix was doing much better by this day. His throat was much better, and he ate well — almost back to normal. We didn’t notice any adverse affects from the chemo or from his refusal to eat for thirty hours. What a relief!

The only real cause of discomfort at this point was from the morphine they’d given him the night before to manage the pain. I hadn’t known this, but a common side effect of opiates is itchy skin, especially on the face. Felix was SO ITCHY. He kept rubbing and scratching his face until it was puffy and covered in angry red scratches. We clipped his fingernails but most of the damage was already done.

day three gene therapyItchy baby

By evening the itching had mostly resolved itself and he was back to his old self. His scratches scabbed over and just needed some time to heal.

Ben and I decided at this point to check out of our hotel. It was too far away and too expensive. It was frustrating having our stuff divided in two different locations and just not worth the money. By checking out early we saved ourselves almost $600. On the plus side, we felt free to indulge in the nicest, fanciest food we wanted. On the negative side, we had to take turns sleeping on the couch and the chair in his room. The chair was awful but the couch felt like LUX-U-RY in comparison.

Day 4: Transplant Day

Among the transplant community, Transplant Day is often referred to as the patient’s “Life Day.” I woke up with tingling with excitement. Felix’s Life Day had finally arrived!! A part of me had doubted we would ever make it here. It felt surreal. Here we were in Los Angeles, ready to get our baby genetically modified, praying that it would save his life.

transplant bucket - gene therapyIsn’t this fantastic?

Everything went perfectly smoothly. Around 3pm, all of the doctors who had been involved in the bone marrow harvest and modification came into the room, along with two nurses. Out came the syringe with his new, modified cells. 135 million of them.

The actual transplant was incredibly anticlimactic. The cells just get infused into his bloodstream like a regular IV fluid. The nurse attached the syringe to Felix’s central line and slowly pushed in the cloudy liquid over the span of five minutes. Felix had been trying to sleep and found the whole process very annoying. The nurse apologized for bothering him, and Ben joked, “Yeah — why don’t you save his life later?”

gene therapy - transplantSee that bigger syringe with the cloudy-white substance? Those are his modified stem cells.

And that was it. We thanked everyone and they left the room. Felix was finally allowed to go to sleep. The nurses continued to check his vitals frequently over the next few hours, though they weren’t expecting any adverse reactions — they’re his own cells, after all.

scratched facePoor scratched face.

Ben and I took turns getting out of the room. I walked down to the UCLA Botanical Garden and wandered through the gorgeous, winding paths.

botanical garden

What a weird life.

Days 5 & 6: Monitoring

The next two days we had to stay at the hospital just so the team could keep an eye on Felix. There wasn’t much fear of anything going wrong, but they just wanted to be sure.

But Felix had another thing going on: teething! At seven months old, he finally cut his first tooth! He was pretty grumpy, and did a lot of whining and drooling and chomping; but as soon as that sharp little point made its way out, he was much happier.

Felix teething

How funny that he happened to get his first tooth while in LA.

Otherwise, the next two days were uneventful. (That’s just how we like things in the hospital!! Boring = good!) We mostly hung out in his room; I took a walk downtown to visit Whole Foods (my favourite store — we don’t have any where we live); and I got a visit from a dear online friend. It was such a treat to get to talk face-to-face and have her speak wisdom into my life. Also: she gave me gifts!

Also, I just want to take a moment to note what a fantastic hospital this is. The building is beautiful and huge. The cafeteria is AMAZING. The food is delicious, fresh, and healthy. And inexpensive!  The selection is enormous. Every morning I got a made-to-order omelet with fresh vegetables for the price of an Egg McMuffin combo. For lunch today I had roasted salmon with leek and mushroom sauce, with a side of roasted potatoes and steamed spinach. For seven bucks. I enjoyed it out in the sunny dining garden. Amazing!!

food

UCLA dining

Heading Home

On Sunday we were discharged. We packed up and caught our ride to the airport. The staff was super-helpful getting us through without too much exposure to the crowds.

bubble boyOur bubble boy.

Again, our first-class flight with Air Canada was absolutely wonderful. I got to take a much-needed nap; Felix did great during takeoff and descent.

flying first class with babyWe spent another night in a hotel in Toronto, and then drove ourselves to London Victoria Hospital where we’ll be spending the next month.

(This is where we spent Felix’s first five months, so it’s all familiar. It feels like our second home.)

Felix will continue to be closely monitored over the next weeks as his white cell counts drop from the chemo. Hopefully we will see them begin to come up, at which point we can go home. He will continue to be closely followed over the next six months or so as his immune system (hopefully!) reconstitutes itself, thanks to his newly-corrected bone marrow stem cells.

back at London hospital

As I’ve mentioned, our biggest area of concern now is his CMV — the virus he acquired in his first weeks of life. As his white blood cells drop, he will have less defense against the virus, and it may rise again and could threaten his life again. The most crucial period will be three or four months from now. Please continue to pray that his immune system recovers quickly and strongly enough to combat the CMV.

Thanks again, from the bottom of our hearts, for all the love and support. We couldn’t have done this without you.

Gene Therapy in LA: Days 1-3

A few weeks ago I explained gene therapy. Now we’re here in LA! Here’s what we’ve been through so far. . .

Flying to LA

Our adventure began with flying out to LA from Toronto. Air Canada and Aeroplan deserve a HUGE thanks for putting us in first class.

Let’s pause for a moment to talk about that.

feeding first class

First class is THE SHIZNIT, you guys. UN-FREAKING-BELIEVABLE. If you thought it was way better than economy, you had no idea. It is better TIMES INFINITY.

I felt like a zillionaire in first class. The second you sit down they come ask if they can get you something, like you’re the Queen of England. You get to sit in these individual pods that can turn into full beds — you can stretch out and sleep through the whole flight if you want. You get to choose a gourmet meal from a menu. They bring you a warm washcloth before you eat. The stewardesses are basically your servants, constantly offering to bring you things. They bring you warm mixed nuts and Lindt chocolate bars, even after you say you’re fine. You get your own TV where you can choose from a selection of new movies (I chose Cinderella. I bawled like a baby.)

first class baby(Felix got a whole pod to himself.)

This must be what it feels like to be wealthy beyond measure. (Remember that we are a couple of Mennonites — a woodworker and a stay-at-home mom. This is luxury beyond our wildest imaginations.)

Our favourite part was how they close the curtain at the back to hide the unsightly riffraff in coach.curtain first class

Out of our sight, peasants! We don’t even want to see you in our peripheral vision! (<– nod to Brian Regan) (“Bring me the head of a pig! And a goblet of something cool and refreshing!”)

They’ve ruined air travel for us, because economy will forever feel like a prison sentence compared to first class.

Anyway. We spent our first night in a hotel, and on Monday morning headed over to UCLA to have Felix admitted.

night in hotel

Day 1: Consents

Monday was our first day in the hospital. Ronald Reagan UCLA Medical Center is a huge, gorgeous hospital. The grand front atrium feels like the entrance of an art museum. The cafeteria is super-classy with lots of delicious, healthy options. Felix was admitted in the Mattel Children’s Hospital, which is brightly and handsomely decorated. His room is spacious and attractive. The staff is all super-nice.

children's hospital

The first day was just going over consent forms (dozens of them!), for the study. The doctor went over exactly what was going to happen every day that we’re here (given everything goes as planned). It was exhilarating and terrifying at the same time. We’ve wanted this for so long and it’s finally here!! But oh, what scary risks we are taking. It’s our best choice, but it’s full of risk.

happy baby

Felix continued to be a happy, energetic baby all day. He had to stop eating at midnight for surgery the next day.

Day 2: Bone Marrow Harvest

Early Tuesday morning, Felix was taken down to the operating room. He was still in a good mood despite not having eaten in seven hours. Crazy baby. I suddenly wept as I said goodbye. What an emotionally-charged thing it is to let strangers wheel your baby away to put him to sleep and take out his bone marrow.

ready for surgeryReady for surgery.

We had breakfast while we waited, and even hopped into Whole Foods down the street.

The procedure took about two hours. When we came back to find him in the recovery room Felix was just starting to wake up. The doctors said everything went really well and they got lots of bone marrow.

I held him for the next two hours and he continued to mostly sleep. He got a blood transfusion to make up for all the blood cells they took. We were allowed to give him some sugar water to drink, which he eagerly took.

The rest of the day was very, very long and hard. Felix was in a lot of pain. He spent the next five hours straight screaming. We took turns holding and comforting him though nothing helped. He was starving, but the breathing tube they’d inserted during the surgery had hurt his throat — he screamed every time he swallowed. Finally they gave him some morphine for the pain and he slept.

sleepFinally in a morphine-induced sleep. This is not how our baby usually looks.

We tried periodically to feed him throughout the day and night but he refused to take anything. He wouldn’t even close his mouth to breathe. When we gave him his oral medicine in his sleep he cried out every time he had to swallow.

It’s torture to watch your children suffer.

Day 3: Chemo

It’s Wednesday morning now. Last night at midnight Felix got his chemo (busulfan). (It’s just an IV drug that went through his central line.) It was dosed over three hours.

chemo

Every time Felix would start to wake up he would cry in pain (still from the surgery, we assume), he would get another dose of morphine, and he would fall back asleep. He still hasn’t eaten in over 30 hours. We still don’t know if the chemo has had any negative side affects so far, or if so, what they are.

He just woke up smacking his lips and looking more like himself so we’re feeling hopeful. Ben just offered him the bottle and he took it!

So it’s time to run. Hopefully today is better than yesterday.

In the meantime, Felix’s bone marrow cells are in the lab, being treated with the corrected gene and being encouraged to grow.

Prayer Requests

  • Pray that the side effects from chemo are minimal and that Felix doesn’t suffer too much more.
  • Pray that all goes well in the lab, and that Felix can get his corrected cells tomorrow (Thursday).
  • Continue to pray that there are no complications and that gene therapy cures Felix, so he can live a long and healthy life!

Thanks again for all your support!

*Read Part Two here*