Felix is Famous! Media Links

Over the holidays, I was contacted by our local CBC network. They wanted to do some stories on Felix — for radio, web, and TV.

I agreed, and spent a morning talking to a few hosts, both over the phone and via Skype. I felt very important.

If you want to check it out, here are links to the stories.

First, my radio interview with Peter Duck. (This one is, in my opinion, the most interesting and detailed. The host really knew what he was talking about.)

Second, the text/web story, which was apparently feature on Yahoo.ca’s homepage.

And lastly, the TV story. Ours starts at around the 10:30 mark, and you have to watch a few ads if you want to view it. But there are images, a video clip of Felix, and a few shots on me on Skype.

(Don’t you love my high-tech solution to take a photo of the screen with my camera?)

Thanks for keeping in touch!

Update: Five Months After Gene Therapy

Ben and Felix(^An opportunity to show off the hats I knitted for my boys^)

This last month has been a big one. We just passed the one-year anniversary of Felix’s diagnosis and hospital admittance, which I am still carefully blocking from my mind. A lot of new stuff has entered our lives. So many feelings, so much change, so much positive momentum. So much Lydia!

Allow me elaborate . . .

Lab Results

We got wonderful news from Felix’s last big blood draw last month — his T-cells are on their way up! T-cells don’t often start climbing so soon after gene therapy, but we’re already seeing a rise. His next test will be in the next week or two, and we can only expect it to be even higher.

We are so thrilled. Gene therapy is working! He’s starting to build up an immune system.

I’ve started smooching him on the cheeks. What a delight! Those round, squishy little cheeks have been begging to be kissed for the last year, and I finally get to do it! A whole year without kissing my baby . . . I didn’t think I’d make it. But I did it. And the reward is heavenly.

(I’m a huge baby kisser. The genetics doctor who first saw us about Felix’s diagnosis said she’d never seen a mother kiss her baby so much.)

Isolation and Lydia

We reached another huge milestone this month: Lydia moved back in full-time. For nine months we only got to see our daughter on weekends; for the last three months we’ve had her over more and more.

The first time Lydia realized she was having three “sleepovers” at our house in a row her eyes shone. “It’s like I’m living here!” she said.

Yes, baby girl. You are living here.

Last week my mom brought the last of her clothes and bedding home. This is her home again. We finally feel complete.

We’ve also been allowing Lydia and Felix to interact with one another more and more — in part because of Felix’s improving immune system, and in part because of Lydia’s increased isolation. Since she’s almost always with us now, there’s little chance of her catching anything. She doesn’t go to the grocery store, or church, or play groups. We even had to turn down a birthday party invitation.

(We’re also allowing more contact because she’s older now. She’s a full year older than she was when Felix was first diagnosed. She’s much more responsible. She now keeps a watchful eye on us to make sure we’re sanitizing our hands enough!)

A few weeks ago Lydia saw me editing a photo of Felix on the computer. She climbed up onto the desk and excitedly stroked the screen, saying, “I’m touching him! I’m touching him!”

computer

The poor girl has been separated from her baby brother long enough.

Until recently, we pretty much prohibited Lydia from crossing into Felix’s territory at all; now she crosses the line freely (she just has to sanitize her hands first). She plays with his toys and reads his books and strokes his head.playing

Watching them interact makes my heart want to explode. They were completely separated for most of his infancy, and when Lydia finally did get to see him we were all, “Don’t touch! Don’t cough! Don’t sneeze! Not too close! Wash your hands! Wash your hands again!” She woke up in the night crying, having nightmares about accidentally making him sick and causing him to die.

I worried she would always resent him.

So far, I only see affection. (And sometimes regular big-sister annoyance.) It’s so sweet to see her laugh and tenderly caress his face, and to have him reach back and smile.

siblings

Between infertility and Felix’s long hospitalization, I had to wait more than three years to finally witness Lydia enjoying the company of a sibling. I don’t want to take it for granted for a second.

Having Lydia at home full-time makes life super-busy, though. She’s always been a SUPER-intense person, and that hasn’t changed a bit. She easily eats up three times more of our energy than Felix does. (She never stops moving/jumping/yelling/shrieking/arguing/demanding/questioning. Ever.) Between her constant demands, Felix’s normal baby needs, his therapy and his appointments (more below), I have almost zero time for blogging.

Felix’s Therapy

This month Felix finally started physiotherapy, occupational therapy, and speech therapy. I’m really happy that he’s finally getting the support he needs, but it has been overwhelming.

The first appointment with physio and speech lasted almost three hours, and focused mostly on what he wasn’t doing yet. During that time I learned Felix would need leg braces and a walker to correct his feet (which have curled in from all those months he spent in bed rather than on his feet), and that he likely wouldn’t be walking before his second birthday. The speech therapist seemed befuddled by Felix’s complete lack of babbling. It was very disheartening.

But since then Felix has made noticeable progress in almost every respect, which is exciting; and we’ve switched to focusing on what he has been achieving. And I’m getting used to the leg braces, just as I’ve gotten used to bottle-feeding, the central line, and daily antibiotics. This is just our life now.felix playing

(Look at his sitting like a big boy!!)

The therapists all keep reminding me that Felix didn’t have a normal infancy, and there’s no reason to believe he won’t eventually catch up.

Thankfully, the therapists all come into our home, since Felix still can’t go out into public. But with three different appointments a week, plus all the exercises I’m supposed to do with him every day, I feel like it’s all we do anymore.

Good thing we can’t go anywhere anyway!

Overall, I’d say we are all feeling very, very happy. We’re thrilled to all be living together again as a family. We’re hopeful about Felix’s progress and health.

Every moment we spend together is a gift.

Felix is One!

 

Felix is one!I can’t believe it. He’s a year old.

I still can’t bring myself to reflect on the year that has passed — it’s too painful. Too many horrible things have happened. I’ve watched him suffer through too much. I can only focus on the present.

We’re so blessed to have made it this far.

At a year, he has spent just over half his life in the hospital (197 of his 365 days).

I’m struck, sometimes, by the normal things Felix has still never experienced at one year. Because of infection control protocols, he has never:

  • splashed in a bathtub of water
  • sat on the grass
  • played with leaves or eaten dirt
  • been smothered in kisses
  • snuggled with his big sister
  • seen another baby
  • pet a puppy or kitty
  • shared food with mommy

BUT! He finally gets to live at home. And he is so, so loved.

Felix is just a wonderful human being and a delightful part of our family. He’s still an easy-going baby who loves his bottle, adores his big sister (still mostly from a distance), and has figured out how to move across the floor without actually crawling.  He likes to party for two hours every night sometime between midnight and 4am. His smile and laugh are infectious, and on a grumpy day he can always be calmed by stepping outside or even looking out a window to see the trees blowing in the wind. Future nature boy in the making.

He’s still not sitting on his own, crawling, or babbling (he prefers to growl), but we’re hopeful that with time and support he will make progress in the coming months.

(We finally saw an occupational therapist for the first time this last week, and have a physiotherapist and speech therapist scheduled to come see him this coming week. I worry about him with every single breath I take, but I remain hopeful.)

He’s four months past gene therapy. We’re still waiting on the results of the latest blood tests, but the preliminary ones done by our own hospital’s lab look good.

Significantly, his CMV is still below the level of detection. We’ve hopefully made it through his lowest drop in T-cells, and we are overjoyed that the CMV never became a problem. In fact, it never even rose to detectable levels! We are beyond thrilled, and at the same time seriously peeved at the doctor (who shall remain nameless) who tried to cancel Felix’s gene therapy against our wishes because he feared Felix would die from CMV. So much agony and fear for nothing!

Our doctor predicts we’ll be able to stop his anti-CMV meds in about a month, at which point we can hopefully have the central line removed. (In the picture above you can see he’s still hooked up to continuous IV– you can see the coiled tube that connects to his IV pump. We’ve gotten creative in how we integrate it into our lives). How exciting to imagine our boy disconnected from a machine for the first time since he was a tiny baby!

Felix’s Birthday Celebration

Since he’s still in isolation, naturally we had a quiet celebration. We put up our fabric birthday banner and he got to wear his new homemade felt birthday crown. (It features red felt leaves since his birthday is in fall.) The grandparents stopped by for some cupcakes and we sang Happy Birthday.

chickpea chocolate cake cupcake withall-natural turmeric-coloured cream cheese icing (tastes like a normal birthday cake!)For the cupcakes, I used my standard chickpea chocolate cake recipe with cream cheese icing. But this time, instead of using beets to colour the icing (pink didn’t seem quite right), I used a teaspoon of turmeric to make it yellow. You couldn’t taste it at all! I sprinkled them with naturally-dyed blue sugar sprinkles (you can buy them here).

Felix's birthday

Felix with cupcakeOh, how we love this boy. We can’t thank God enough for him.

Hoping and praying for many more birthdays to come.

Thank you, always, for your prayers, love and support.

 

An Update on Felix, Three Months After Gene Therapy

11 mos

We got a really encouraging email from Felix’s doctor in LA a few weeks ago. His most recent blood tests indicate that he’s right on track for the trial — he’s almost exactly in the average range for this point in time post-transplant. His lymphocyte counts are still trending down, but that’s to be expected. They should pick up in a month or so.

Our doctor sent an attachment of the lab results, which are crazy science-fictiony charts which make almost no sense to me, but one part stood out as exciting: enzyme activity.

If you will remember, Felix was born without a functioning immune system because his body couldn’t make the enzyme ADA, so he was put on bovine ADA injections as a temporary solution. We stopped giving Felix enzyme injections a month after gene therapy. This was two months ago, so if there’s enzyme activity going on in his body now, it’s all coming from his own cells. As our doctor explained, this shows that “the ADA gene engineered stem cells have engrafted and are making ADA enzyme.”

Doesn’t that sound insane? The engineered stem cells in Felix’s body are starting to do what his body couldn’t do naturally.

Our doctor summarized the results this way: “All good and suggesting he will do well.”

That’s all the parent of a medically-fragile child wants to hear.

We have been feeling so much more at ease since then.

The last time we checked his CMV levels, they were still in the undetectable range, which is amazing and wonderful. His t-cells (which fight viruses like CMV) have already dropped substantially but still seem to be able to keep the CMV under control. We still have a couple more weeks before we’ll be out of the woods, but we’re so encouraged by how well he’s done so far. None of the doctors knew what to expect with the CMV, and Felix is proving that he’s a fighter.

And possibly that prayer has power.

Development

As for Felix’s development . . . at eleven months he’s still not sitting up on his own or crawling. I was losing my mind with worry so I finally contacted a local chiropractor who specializes in infant milestone development. He actually came to our house and gowned up to see Felix.

He basically told me, in much nicer words, “Quit worrying. He’s fine.” He confirmed that there’s nothing neurologically wrong. His spine and hips look perfectly good, too. His shoulders are just underdeveloped from lack of “experience” (his word), thanks to the extended hospitalization. He just needs time and practice.

I let out a huuuuuuuuuge breath of relief when he said that Felix’s slumped shoulders were also the reason for his constant rocking back and forth. He said kids with that problem always do that — it feels good, because it’s the only form of locomotion they can achieve.

The chiropractor also basically explained that the reason Felix isn’t sitting at this point is because he doesn’t want to. He never said it in so many words, but I gathered that the Exersaucer might have been partly to blame. Once a kid gets a taste for standing (artificially), he loses interest in sitting and lacks the motivation to work for it. I have noticed that when I try to sit Felix up he seems to almost intentionally flop over. “No thanks, Mom. Too much work.”

The chiropractor gave us some exercises to practice with him to get him moving in the right direction, but overall felt completely confident that Felix will get there in his own sweet time.

He even had some thoughts on Felix’s lack of babbling — He said Felix “vocalizes” just fine for his age. He suggested that the lack of babbling probably stemmed from a general lack of oral stimulation.  That makes sense since he was tube-fed for so many months. He hasn’t had much chance to put toys or food in his mouth, either, because everything has to be so sterile. And he couldn’t see our mouths move for 6 out of 11 months. Again — with time he should catch up.

Thanks again for your prayers and support!

Felix These Days (And a Blogging Break)

crawling

We had a bit of a scare recently: Felix caught a cold.

We know it came from Lydia. We had her over for a night and she woke up with a stuffy nose. Alarm bells went off. But we couldn’t bring ourselves to bring her away. The grandparents were all busy and the aunts and uncles have had to raise her enough already these last ten months. (Plus the last time Ben visited her at my parents house, she cried, “Why don’t you want me at your house?” How can a parent’s heart not break?)

We decided to keep her here and just keep her and Felix separated. It was a very stressful couple of days, and in the end we regretted it because Felix ended up with a stuffy nose anyway.

Immediately after that first sneeze that spewed out thick, opaque discharge, I freaked out and called our doctor at her home. She told us to keep taking his temperature, but if nothing else developed, we’d wait until his scheduled appointment the next day.

He’s been fine. She’s not too worried since he seems well. So far it hasn’t developed into anything worse. We don’t think his t-cells have dropped yet from the chemo, so we hope he has enough to fight this off.

I’ve talked to some other SCID parents, and it sounds like rhinovirus (what he has) is one of the less serious viruses. Usually, the only symptom is a runny/stuffy nose.  As long as he doesn’t get, say, an ear infection, it’s more a nuisance than anything. The only thing is, with immune-deficient children, it can last months and months. Some have had it for over a year.

Ugh.

So we’ll keep suctioning out his nose and hopefully he’ll fight it off in time.

Otherwise, Felix has been doing pretty great lately.

sitting

Since my last post expressing worries about his development, he has suddenly made a bunch of progress. He’s scooting around on his tummy like a pro, and is even starting to push up onto his hands and knees. We were shocked when we first saw it. He’s never done anything like that before! How thrilling!

He’s starting to sit up on his own for slightly longer stretches (5-10 seconds), and is starting to babble m and n sounds (my favourite is um-num-num-num, and when he starts to whine enya, you know he’s seriously unhappy.)

It’s encouraging. I’m feeling a bit better about his development.

I still panic anytime I think about his CMV in the next few months as his t-cells drop, but I’m doing my best to stay in the present.

Blogging Break

I’ve also reached that point again where I think I need to take a few weeks off of blogging. (It happens every so often.)

Even when I only post about once a week, this blog takes up a surprising amount of mental space, which I feel I need to devote to other things right now. I need to give myself permission to take a break.

I’m not entirely sure when I’ll be back but I’m sure it won’t be long. And I will absolutely let you know if anything big develops with Felix, good or bad.

For now, we’re just continuing life in isolation at home. It’s dreadfully boring but we’re all fine. It’s a trillion times better than life in the hospital, and Lydia’s visits are the highlight — she exudes energy and joy. Lord, I love that girl.

Thanks always for your love and support.

Felix is 10 months (Two months past gene therapy)

Felix 10 months

I thought I’d provide an update on Felix, now that he’s two months past gene therapy.

Felix is just about ten months old. He is a huge snuggler, which I love. He’s very social and doesn’t like to be alone. He’s got three goofy teeth, he loves drinking water from a glass, and he could jump in his Exersaucer all day if we’d let him. (He got addicted to it in the hospital. We’re trying to wean him off of it.) He’s been very well since he was discharged from UCLA two months ago.

Felix still doesn’t sit up on his own yet which worries me. He’s not even close to crawling, though he can roll, pivot and turn. He’s quite behind, developmentally, in  general — I’d guess he’s at about the six- or seven-month level. He doesn’t babble any consonants — he just squeals, laughs, growls, and yells. He’s just starting to put food into his mouth.

He doesn’t have an occupational therapist because we’re trying to minimize his contact with people. Our number one priority during the first six months post-gene-therapy is building up his immune system and keeping him safe.

I try to remind myself that Felix has good reason to be behind — he didn’t get much chance to develop during those six months in the hospital. He was constantly hooked up to machines, healing from surgeries and lying in bed, battling CMV. Stimulation was limited in that little white hospital room, and he couldn’t see anyone’s faces. He never saw anyone eat or talk or smile, and he rarely got to play on the floor. His toys were limited to hard plastic. His infancy was nothing like a normal baby’s — he didn’t get to go places or meet new people. He didn’t get to feel wind or smell food or pet doggies. So of course he’s behind.

But I still worry that maybe there’s something neurologically wrong. Autism runs in Ben’s family. While in the hospital the second time he started to exhibit a lot of repetitive behaviour which freaked me out — constantly rocking back and forth and rubbing his head against the bed. (That has mostly subsided since returning home. Maybe he was just losing his mind from boredom.)

I’m comforted by the fact that he is at least making progress, even if it’s slow. His body is strong and his eyes look bright. And it’s still such a blessing to watch him eat, to want and enjoy food — both bottle and solids. I had really worried if he would ever eat normally again, after all those months with the NG tube.

We still take him to the hospital two hours away ever other week for clinic visits. At these visits he mostly gets blood work done which is no biggie with the central line. We got trained to do his dressing changes (i.e. to chance the bandages on his central line, the permanent IV line in his chest), so at least we can do that in the comfort of our home whenever he’s ready. (They used to be a nightmare in the hospital.)

central line dressing change

So far, all the data we’ve gotten from blood work has been really positive. His liver enzymes had been high without a clear reason since he was first diagnosed and have been a cause for concern; but they have slowly been coming further and further down. At his last visit they were in the completely normal range. How exciting! What a relief!! His CMV counts have been “below the level of detection” since just before gene therapy and so far have stayed that way — another huge and awesome relief.

We are still waiting for his T-cells to drop as a latent response to the chemo — that should happen in a month or two. At that point we can expect his CMV to go up again, since his main defense against the virus will be down, but hopefully not to dangerous levels. He has managed to overcome it before. If he can get through that stretch, we will be able to breathe much easier.

Isolation

I’ve said before that Christmas will be sort of a benchmark for us — at that point we’ll know, more or less, whether gene therapy was successful. Some people have been under the impression that he’ll be able to live a normal life at that point. I want to clarify that if we get the go-ahead to start moving out of isolation, that only means maybe, say, his (grown-up) aunts and uncles can come visit him and hold him for the first time. Maybe we can take him to Grandma’s house. It does not mean we’ll be taking him along to the grocery store or hosting play groups. Church and birthday parties are still a long way off — maybe by next summer.

isolation

For now, he mostly stays in his isolation room on the main floor, though we take him into the kitchen for meals, and sometimes let him just sit in his high chair and watch us work. (The fact that he’s not mobile helps here.)

Lydia

We’ve been having her over more and more — usually for the whole weekend. We’re even starting to keep pajamas and underwear here. It’s heavenly.

She usually stays “behind the line” (the line of tape sectioning off Felix’s isolation room), but occasionally she can sanitize her hands and come interact with her brother. She adores him and would be all over him if she could be. Interestingly, she’s totally open to the idea of having more babies in the future.

Mostly, though, she sits in the computer room and colours pictures of Elsa and asks philosophical questions about Disney’s Frozen (a movie she has seen TWICE): “Why did Elsa not want Anna to be frozen? Why did she touch her face? Why did Prince Hans want to kill Elsa?” (If you thought there was a finite number of questions one could ask about Frozen then you were mistaken.)

That about sums up our life lately.

It’s magical and terrifying and tedious and delightful all at once.

Back Home Again.

These last few days have been some of the happiest of my life.

going home(Getting ready to go home)

On Friday Felix was discharged from the hospital after 41 days. (Which is nothing compared to the 149 we did the first time.) It was a week after I gave him his last ADA injection. (He’d been receiving them twice a week for the last seven months.) Hooray!

We’d been waiting on some final blood work to see whether it was safe to bring him home. The results we got Friday morning were far, FAR above our expectations. (So much so that at first we were convinced it had to be an error.) The most important news we got was that Felix’s corrected cells have engrafted. His body is making its own ADA! The gene transfer is working!! (We won’t know whether the therapy was truly effective, however, for another four or five months). If we had the time and weren’t in isolation, I would totally have organized a party.

Our primary doctor was about to head out for vacation so she was particularly thrilled — after delivering the news she blew out of there with a huge weight off her shoulders. We walked out a few hours later without a note of fanfare.

Once again, I discovered that being home was even more wonderful than I’d anticipated. Our home is just so beautiful and cozy and perfect. (Even with half the siding missing.) I love it.

Felix is doing better than ever now that he’s home — his sleeping and eating have been fantastic. I feel like he’s already making progress developmentally after just a couple of days. He can always tell when we’re happy.

Sunday we celebrated Lydia’s fourth birthday at my in-laws’. We had a barbecue and I made my signature chick pea chocolate cake with beet cream cheese icing. Lydia had a ton of fun in the kiddie pool with her cousins and friend. It was a holy day.

lydia's fourth birthday

birthday celebration

The following day, her actual birthday, I was able to go to my parents’ house in the evening and put her to bed. What a gift it was to braid her hair, read her Bible story, and kiss her cheeks before tucking her into bed.

Ben and I also quietly celebrated our tenth wedding anniversary this weekend. We’re hoping to go out for dinner and a movie yet sometime this week. Ten years!! can you believe it?

I’ve done plenty of things wrong in my lifetime, but marrying Ben is the one thing I know I did right.

At home, I’m going crazy trying to reorganize our home for when we all live here together. I love it.

Thank you, thank you, thank you, everyone, for helping make this week happen. Your prayers, financial support, and emotional support (and Ontarians — your taxes!!) helped bring us here.

I am forever grateful.

Last Week in the Hospital

siblings

Sorry I haven’t been blogging much lately. There just hasn’t been much going on here. Also, I’ve been too busy knitting. All day every day KNITTING. It’s the only thing that keeps me sane.

(But that’s another post.)

We don’t have an exact discharge date yet, but sometime this week we should be going home. (I should be squealing with excitement but somehow all this time sitting around in a hospital room kind of dulls your emotions.) We’re just waiting on some blood work to see how his cell counts are doing, but the last time we checked they were trending in the right direction.

Felix’s white blood cells are still very low, so he’ll remain in isolation at home for a few months as he is still very vulnerable to infection. Lydia will probably continue to live with grandparents for a while longer. (She’s so used to it by now, after eight months, she doesn’t even think anything of it — she refers to our home as “Mommy and Daddy’s house.” For now, Grandma’s house is “home.”)

We’ll continue to drive up to the hospital once a week for checkups and to have the dressing on Felix’s central line changed.

Speaking of which . . . Felix will remain on continuous IV meds for the next several months to keep his CMV counts in check. (I’m happy to report that they have remained “below the level of detection” since before gene therapy. If  you will recall, CMV is a virus you have in your body the rest of your life once you have it, and only causes problems for severely immune-suppressed people.) His really vulnerable period is still ahead — generally around 3-4 months post-transplant — but hopefully with the support of the right meds he will beat it. We’re so excited to go back to using a portable IV pump in a bag rather than the doggone IV pole we’ve had to use here. Felix has been tethered to that one corner of the room for over four weeks already. It sucks.

exersaucer

Felix has been great this whole month, though. He’s still such a happy, sociable, energetic baby. He kind of quit gaining weight about a month ago, which is only slightly concerning. We’re just so happy he’s doing all of his eating orally. He also STILL can’t sit up on his own, at eight-and-a-half months, but he’s getting close. He loves his Exersaucer to death. He’s super-cuddly which is, in my opinion, his best quality. He’s got two adorably goofy teeth and he’s working on some more.

We are so thrilled to be taking our baby home. We’re dreaming of a life where our whole family can live together under the same roof again. And someday Lydia will have her little brother.

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.

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