Felix is Two!

Last week we celebrated Felix’s second birthday.

It was a short, sweet and quiet celebration, just at home as a family. But it offered some time to reflect on how far he’s come in the last year.

I felt bittersweet about the arrival of his birthday. Now that he’s two, it feels more glaring that he’s so behind in his development — he still can’t walk, can’t talk, and has disordered eating because of all those months of tube-feeding. We’ve recently learned that he can’t really hear, either, so we are working towards getting him hearing aids with the hopes that we will see progress with his speech.

But goodness, we’ve come a long way. Last year he was still in strict isolation and was still hooked up to continuous IV. He had a central line in his chest and was still on strong oral medications. He couldn’t sit up on his own or crawl. He had never been kissed, had never had a bath. He had never seen the outdoors beyond our back yard, had never seen another child.

In the past few months he has gone everywhere with us: to the park, the mall, the beach, to friends’ houses. He has weekly days out with both grandma and oma. He splashes in the bathtub for almost an hour every day, just delighting in being surrounded by water. He’s chewed on sticks and gotten his hands dirty in the mud. He gets smothered in kisses constantly, by his adoring big sister and mama.birthday kisses

Felix continues to be an absolute, complete and utter delight. He’s the snuggliest little snuggle bug you ever did meet. He loves to explore new places and new toys (even if he does it all on hands and knees). He loves being tickled, and will pull our hands to his face to get more tickles when we stop. And did I mention he loves the water? Bath tubs, swimming pools, the lake, you name it.

We are unspeakably blessed to have him in our family. His life is a miracle and we are in constant awe of that.

I just want to thank you all again for supporting us through prayer, friendship, and financial support over the last two years. We will never stop feeling grateful.

Felix in the News (Again)

Photo credit: Dale Molnar

 

Hi friends!I just wanted to pop in briefly to let you know about some recent news coverage Felix has gotten.

The local chapter of CBC did a story on Felix a few months ago while he was still in isolation (I shared those links here.) They contacted us a while ago to ask if they could do a follow-up story, now that Felix is out in the world. We were happy to welcome them into our home and share our story.

So if you’d like to read, hear or watch a condensed version of Felix’s story, here you go! They did a wonderful job. We had all had a crappy night and none of us were at the top of our game. But the folks at CBC did their magic and made us sound totally coherent.

  • There was a really great TV story, but as I went to link to it, I found that it seems to be gone. Bummer! You would have loved it!

That’s it for now. Hope everyone had a great summer. Hope to be back in this space with some of my own words soon!

 

Happy Life Day, Felix!

This weekend we celebrated the one-year anniversary of Felix’s transplant — often known in the transplant community as his “Life Day.”

One year ago, this happened:

gene therapy - transplantAnd now a year later, here he is! Completely out of isolation. He is a happy, healthy little boy.

We celebrated with a big old shindig in my parents’ back yard, complete with bouncy castle. We tried to invite as many local friends as we could who’d helped support us through Felix’s awful first year, about 80 guests (wishing we could invite more!).

Our son, who was supposed to die, is alive and well!

It was a perfect day, too — sunny and warm, but not hot, with just a wisp of a breeze.

Here’s a quick photo dump for you:

tent(Friends made that awesome banner)

tea lydia

 

boucy castle

Felix bouncy castle

Happy Life Day

I think he liked the balloons.

balloonsballoons2We feel so incredibly blessed.

Thank you, God, for letting us keep our boy.

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5 Things I Learned After 6 Months in the Hospital

children's hospital

(This draft has been sitting around for close to a year. I finally decided to go ahead and publish it. These are reflections on the things I learned after living in the hospital for six months with my critically ill child. Forgive me that they’re a little gloomy.)

1.I’ve glimpsed hell. And I’ve learned that it’s possible to walk through it and come out alive.

Before you do it, it seems impossible. But you can survive it.

I didn’t have to walk into the darkest depths of the inferno — actually losing my child — but I did come very close, and I’ve seen other families do it.

And somehow, despite what it felt like at the time, we survived.

2. Hospitals are truly horrible places to spend any amount of time. But they are full to the brim with wonderful people.

I have never met so many smart, interesting, kind, devoted people in one place as I met in the hospital.

I want to give a special shout-out to nurses, who are some of the most superhumanly kind and selfless people on the planet. Turns out, you simply don’t go into nursing if you’re a crappy person. And we all benefit from that.

3. I can do things that I previously believed unfathomable.

I never could have guessed I could hold down my precious, innocent baby and allow people to hurt him.

Not only that, I can hold him down and hurt him myself.

Not only did I have to ignore his cries, I made him cry.

(Inserting Felix’s feeding tube, over and over and over again while he screamed in anguish, was and is the worst thing I have ever had to do in my life. I had to do it so many times. It goes against my every instinct, belief, and philosophy. My entire being is bent on protecting him from harm; and here I was, invading his body, working against his thrashing and screaming. Over and over again.)

If I can do these things, who knows what else I’m capable of — for good or for evil.

Could I sacrifice my own life for someone else? Could I kill a person? Maybe. Nothing seems impossible anymore, under the right circumstances. I now know that I’m capable of anything.

4. Six months in the hospital is not that long a time.

Before I lived it, I would have balked at the idea of staying in the hospital for one month. A whole month of my life spent in a sterile hospital room?

Then we did five. Then we got to go home for a few months; and after that, when we knew we were going in for one more month, we considered that a very short stay. Practically nothing. Just a couple of weeks.

In the long run, those six combined months were a short time in my life.

I know families who have been stuck in the hospital for a year or longer.

My whole perspective on time has changed: really, no amount of time on this finite earth is that long. Nothing we experience here is eternal.

A lifetime isn’t really even all that long.

5. All feelings have a beginning, a middle, and an end.

ALL feelings.

That current emotion that feels like it’s going to swallow you whole? It won’t. It will end. It will eventually be replaced by another one.

An emotion is an event. It will pass.

Any time I feel like my emotions are going to end me, I remind myself that I can practically put that feeling on a timer: the seconds are ticking away, and that emotion will come to an end. In the end, I will still be standing, but that feeling won’t be.

Update on Felix: Ten Months After Gene Therapy

playing with seashell

We reached a couple of really big and exciting milestones with Felix in the last few months. What an exciting time we’re living!

No More Central Line!

central line dressing change

This was a biggie. Felix has had a central line in his chest since he was only two months old, and was on continuous IV for the first fourteen months of his life. The central line stayed in for one more blood draw, and then it took a while to organize the surgery.

Last month, at the age of seventeen months, he finally had the line removed. It had been a part of his body for almost his entire life. It feels amazing to be able to see his whole chest. (It was always covered in a big dressing. His right nipple hadn’t seen the light of day since he was a newborn.)

No more worries about the line getting yanked; no more worries about getting a fatal line infection; no more stressful weekly dressing changes. (Just imagine holding down a screaming toddler, peeling a big bandage off his chest, sterilizing the whole area, and then replacing the bandage, all while trying to maintain a completely sterile environment and making sure the line doesn’t get yanked out of his chest. Every week of his life.)

It felt so wonderful to get rid of all the medical supplies related to the central line. Get out of our house!

medical supplies

Hooray! Our boy is 100% cordless!

no more central line!

(The one downside, of course, is taking blood. He now has to get all blood taken the regular way — via needles in his skin. His last blood draw took three pokes and three adults holding him down. It’s heartbreaking, but honestly, nothing compared to a lot of the suffering he’s endured. I’ll take that over shoving a tube down his nose any day.)

No more Antibiotics!

Felix has been on antibiotics since his diagnosis at two weeks old, to protect him from infection in the absence of a working immune system. His cell counts are finally high enough that his doctors felt comfortable taking him off of them.

He’s down to only one med now — just an oral antiviral, just to make absolute sure his CMV doesn’t return. (It’s probably unnecessary but our doctors don’t want to take any chances, since he’s the only child in the trial with CMV). I cannot wait for the day we can take him off of that one, too!

And here’s the best, most exciting milestone of all:

An End to Isolation!

stones

Felix is finally allowed to do just about anything. We can take him out to friends’ houses, take him into restaurants, take him to the grocery store, take him to the zoo, etc.

IT’S SO INCREDIBLE TO SEE FELIX OUT IN THE WORLD!!

I get a thrill every time I see him laying out on the grass, looking up at the trees swaying in the wind. It fills my heart with joy to see him giggle at the sight of other kids playing in the same room as him.

At long last, Felix finally has the rich learning environment he deserves. He gets to see people of all ages talking to one another, gets to crawl around on grass and tear apart flowers with his fingers. He gets to feel different ambient temperatures and smell different aromas and move around on different textures. He can play freely in water and sink his hands into containers of dry rice and beans. He’s seen dogs and chickens and cows.

sensory table

It never gets old. Just one year ago he’d never seen a person’s face uncovered and wasn’t even allowed to see his sister. He’d only seen two rooms in his life: the hospital room in which he’d spent his first five months, and then our living room, which was scrupulously cleaned and sanitized every day.

We still have to be a little careful — he won’t be going to the church nursery or Early Years center any time soon. We’re supposed to avoid big crowds and wash everyone’s hands regularly when we’re out. But we’re pretty close to normal life now, and I hope I never take it for granted.

Oh, and there was one more milestone I almost forgot, because it was so unpleasant:

Beating His First Big Virus

Our whole family (and extended family) got hit with a nasty norovirus. We were all vomiting and experiencing severe “digestive distress” (if you catch my drift) for weeks.

Felix got it too. And he beat it.

It took him longer, of course. He was sick for almost three weeks. I pretty much held him through the whole thing.  He didn’t eat a bite of solid food the entire time, and I think he lost some weight.

BUT HE DID IT. He has enough of an immune system that he was able to overcome it.

A year ago, he would have died. This year, it just meant a really sucky couple of weeks.

Praise God!

We are so grateful to have our boy.

Where I’ve Been Lately: March 2016

(I started writing a What I’m Into post, but it quickly turned into this, so I decided to make that a separate post.)

March was full of amazing milestones with Felix. First time to the grocery story. First time to the library and the park. First time seeing dogs, chickens and cows. Amazing!

I wish I could have been filled with joy during all of these events.

Instead, I’ve been feeling nearly as much despair as I felt when we first got Felix’s life-threatening diagnosis.

We’re pretty sure he’s autistic.

I’ve had my sneaking suspicions since he was only a few weeks old, but recently one of his therapists expressed some concerns and now all of Felix’s little quirks and delays feel glaringly obvious to me.

Of course he’s autistic. Of course.

I go to sleep crying; I sleep fitfully; and I wake up with a deep sense of dread and grief. When we do go out and have fun I am constantly on the verge of tears. I’m never fully there.

I can’t think, I can’t cook. I can’t plan for the future. I am barely getting through the day.

This can’t be happening. Not again.

We haven’t gotten an official diagnosis, but I’m bracing myself for the worst. Autism runs in Ben’s family so I’m quite familiar with the symptoms. In fact, I’ve been quietly researching autism for years, half-expecting it to become relevant in my own kids eventually. I just really hoped I would never need to use it.

I’m grieving all over again. First we lost Felix’s infancy to SCID; now I’m watching my dreams for his future slowly die. Nothing is going the way I’d hoped it would.

I can feel that I have been absent from the world in the last weeks. I can’t seem to bring myself back. I still haven’t fully come back after those hellish months in the hospital.

Where have I gone?

I know in my mind everything will be okay and nothing has really changed. We love that baby so much and we want him in our lives desperately. God has been good to us.

But right now I’m just really, really, sad. I don’t know how long it will be before I am able to come back.

Maybe pray for me? And my poor family, and sweet Felix?

Update on Felix: 8 Months After Gene Therapy

Felix outside, 8 months after gene therapy

Felix is sixteen months old (i.e. one year and four months), and eight months post-gene therapy.

Last month was the first month Felix didn’t need to go in for lab work (until now, he’s had to get blood work done every month; after six months post-GT it changed to only every other month — yay!) so I didn’t have much for updates.

We haven’t gotten the results from this last blood draw yet, but we anticipate that he should be close to the normal ranges for most, if not all of, his cell counts.

We continue to hit exciting new milestones all the time!

Medical Milestone: No More Infusions!

ivigPlaying with his bravery beads and having a snack during his 3-hour IVIG infusion

Since Felix’s diagnosis at two weeks old, he has had to receive a blood product once a month called IVIG (intravenous immunoglobulins), which helps fight off certain infections. It’s a three-hour-long infusion that involves constant monitoring for any negative effects. Nurses have to take his vitals (temperature, blood pressure, oxygen saturation) constantly, and it’s very uncomfortable for him. Along with blood work and other assessments — not to mention the two-hour drive each way — our clinic visits have always been exhausting, full-day events.

This week Felix had what we expect will be his LAST IVIG ever!! His body appears to be making enough antibodies on its own so that he won’t need it anymore. Woo!

He still has his central line (which is how he received his infusion), but now that he’s off of all IV meds, he’s done with IVIG, and how blood draws are down to once every other month, we are discussing having it removed in the next few weeks (a minor surgical procedure). We can’t wait! The weekly dressing changes are always stressful, and it poses a constant infection risk, so it will be good to have that gone. (It was nice for blood work, though. Taking blood from a line is soooo much easier than with a needle.)

Isolation Milestones

Slowly, slowly, Felix is being able to engage the outside world more and more. Over the last two months he has experienced the following for the first time:

  • Touching the ground! At a year and five months, Felix touched the ground for the very first time. We even let him crawl on the grass a little. We were all so totally psyched to see our SCID baby outside! If only I could have sent a picture of it to my past self when we were in the hospital for five months straight. If only I could have known this day would come!
  • Bathing in the bathtub! Until now, we gave him sponge baths since our doctor wanted us to boil all water that touched his body (and also because he was always hooked up to an IV). He got a couple of kitchen sink baths before finally graduating to the bath tub. He freaking loves the bathtub. He goes crazy splashing around in the water and cries when it’s time to come out.Felix bath
  • Visiting grandparents! He got to see Ben’s parents’ house for the first time last week, and for Easter, he will see my parents’ house. I just wanna cry thinking about it.
  • Having friends over! We’ve had friends over on three separate occasions now. We’re limiting it to families with only single children (who are fully vaccinated and confirmed to be well), but hoping to expand that soon.

Another big step: we removed the line of tape that separated Felix’s room from the rest of the house! The whole house belongs to Felix now.

(We’d been taking him into other rooms for a while now, mostly keeping the tape on the floor so visitors would know not to cross over; but we no longer have a special area designated for Felix).

At our last visit, our doctor okayed visits to parks, libraries, malls, etc, especially if we keep him in a stroller and/or sanitized cart. ACK!! I can hardly imagine Felix out in public!!!

Baby Milestones

Felix has continued to focus on his gross motor development, perfecting his skills at cruising around furniture, pulling up, squatting, sitting, etc.

playingCausing trouble, like a proper toddler

He also decided to go back and meet an old milestone he skipped: he started crawling on his hands and knees! Our occupational therapist says this should help him with his fine motor development, as it strengthens vital muscles required for these skills.

His fine motor skills and speech are still lagging, but at least they’re moving forward a little bit — his babbling is getting more sophisticated and he’s allllmost got the pincer grasp down.

All in all, though: he had about six months of his life taken from him, when he was tethered to an IV pole and stuck in a hospital bed, and he seems to be staying about five months behind his peers in all areas. So I’d say that seems pretty okay.

(I know I said that all nonchalantly but the truth is I worry about his development every hour of every day. WORRY WORRY WORRY. Some days I’m certain he has a disability; other days I’m not sure. I constantly have to remind myself that it doesn’t matter because we will adore him no matter what.)

So that’s been the last couple of months for us!

Update on Felix: 6 Months After Gene Therapy

Felix 14 months

(This post is coming almost a month late. Next week it will be seven months! But better late than never.)

It’s been another big month for Felix, full of exciting milestones!

Medical Milestone: No More IV Meds

This month Felix was able to switch to oral versions of all his medications. No more IV meds!

Our doctor decided to leave the central line in for another month to make sure he handled the oral meds all right. We will probably wait until his next blood draw (you can take blood from it as well as administer drugs through it — it has saved him dozens of pokes over the last year) and then have it removed (which is a surgical procedure).

For the first time in fourteen months, Felix is not attached to a machine. It’s amazing. My boy is cordless/wireless!! When I pick him up, he’s the only thing I pick up!

Life is slowly becoming more normal.

eating - Felix 14 months

Lab Results

Felix’s lab results continue to look great. He’s actually in the lower end of the normal range of T-cells and B-cells! (Being able to grow these immune cells are the main goal of gene therapy). However, they’re still immature cells, and the doctors will continue to run cell function tests to see how well they’re working. Can they actually fight viruses/bacteria/fungi? That’s the main thing we’ll be looking at over the upcoming months.

We can see an end to isolation in the not-so-distant future. It’s so exciting.

Baby Milestones

Felix 14 months

Felix is fourteen months (i.e. one year and two months) old now.

This has been a big month for gross motor development. In the last month alone, he has learned to:

  • pull up to a high kneel
  • pull up to a stand
  • sit unassisted for long periods of time
  • stand for long periods of time while holding onto something for balance (even one-handed)
  • start to “cruise” on furniture and take his first few assisted steps.

We’re so thrilled.

He still hasn’t made much progress in fine motor and speech, but I’m hopeful that we’ll start seeing progress in these things now that he has good upper body strength. Now that he’s upright and not on his back or belly all the time, he actually has the chance to manipulate things with his hands more. I’m hoping that now that he’s mastered a few of these big-body movements, he can start to focus his energies on other things as well.

He’s still way way behind his peers, of course, which can get discouraging; but I’m so grateful he’s moving forward.

(This is how Felix felt about his first time in water. He warmed up to it.)

Felix’s Miracles (Or: To God Be the Glory)

My relationship with God is . . . decent. It’s not spectacular. I don’t think it’s ever been.

Obviously that’s almost 100% my own fault. (At the same time, I’ve always thought it wouldn’t kill God to be a tiny bit more communicative with folks who have already devoted their lives to God. I mean, would it be so hard to speak audibly every so often to someone who’s been a Christian her whole entire life?)

Anyway, all this is to say, I don’t always really know what I’m talking about when I talk about God. There are others who know God a lot better than I do. I’m no super-disciple or anything.

But I am a believer and continue to be a half-assed follower, for reasons I don’t fully understand myself.

And all I know is that when I was begging God to save my son’s life, I promised God that if God followed through, I would give God ALL the credit and ALL the glory. “The world will hear what you’ve done and will worship you for it,” I vowed. “YOU will be glorified, and your love and power will be seen.”

So I want to keep my end of that promise.

I want to shout it out: Felix’s incredible healing — though it happened through doctors and science and medicine — was all God’s doing. I believe it with all of my being.

God stepped into my family’s life and worked an amazing miracle. And God deserves all the glory.

It’s not fair, of course. We don’t deserve it. So many families who are way godlier than us haven’t received this kind of blessing and it doesn’t make any sense. I don’t understand it. But God decided, for some reason, to extend his grace to us and allow us to watch our son experience miraculous healing.

And I want to spread the good news.

God saved our son.

 I believe prayer played a part. I don’t understand prayer any better  than I understand God, but I do believe prayer has power.

So, so many of you prayed for Felix. Even when I couldn’t. People all around the world rallied around Felix in prayer. Friends, family, strangers, and a group of nuns in Missouri.  Christians, Buddhists, and even an atheist friend. Felix’s doctors laid hands on him and prayed for him with tears streaming down their faces. You begged God to heal him. And God responded.

So many people participated in Felix’s healing. Dr. Kohn and his team in Los Angeles. Our incredible doctors in London who have  become lifelong friends. Our doctor’s secretary and the pharmacists who made enormous sacrifices for Felix. The loving nurses and nurse practitioners, the kind janitorial staff, the dietitian — all played valuable roles. The medical community as a whole, and the amazing health care system in Canada . . . this couldn’t have happened without them.

But it all comes back to God.

I believe that all good things come from God. ALL good things.

And we have experienced a good thing. Just look at him.

happy felix blog

I wanted to review some of the miracles we experienced with Felix in the last year.

Felix’s disease was caught by newborn screening.

Newborn screening for SCID  only started in Ontario the year before Felix was born. It still doesn’t happen in all provinces in Canada or all states in the US.

In fact, if Felix would have been conceived when we first started trying for a baby in 2012, he would have been born too early to be caught. (So . . . yay for sub-fertility?)

There’s no way of knowing what would have happened if it hadn’t been for his early diagnosis. Who knows how sick he would have gotten before getting a diagnosis. I personally don’t think he would have survived — he already barely made it, even with such early intervention.

It’s amazing that Felix was born in the right place at the right time to get early treatment.

Felix Didn’t Die from CMV

When our doctors discovered Felix had caught cytomegalo virus (CMV), they sat us down with a nurse practitioner who specialized in end-of-life care. We didn’t know if he was going to make it and they wanted us to be ready. CMV is one of the biggest killers of SCID children. For a few days we watched in agony, waiting for signs that his body was shutting down. We have been on tenterhooks ever since.

unnatural healing

But it never happened. He never showed any strong signs of infection. He got started on anti-viral medications, as well as enzyme injections to help build up an immune system. and after a few weeks his viral load began to go down. After a few months it became almost undetectable in his blood stream.

Felix became vulnerable to the virus again when he underwent chemotherapy. Some doctors feared the CMV would rear up and kill him.

But again, it never happened. In fact, his counts never increased beyond barely-detectable levels. He has now reached the point where he is almost completely safe from CMV disease.

 Felix Was Accepted in the Gene Therapy Trial

gene therapy - transplant

Felix was number 14 out of 15 children accepted in the gene therapy trial in L.A.

When we were first learning about gene therapy, the trial was only open to 10 children and was already full, but there was the possibility of the number being extended to include five more. There was already a waiting list. (But he made it in!)

In order to be accepted, Felix had to undergo rigorous examination to make sure he was healthy enough to quality. God ensured that Felix was well enough to receive the treatment, and that the CMV didn’t interfere with his acceptance.

Again, there’s no way of knowing what treatment Felix may have eventually received if gene therapy hadn’t been an option, but I completely believe gene therapy was the very best option for him.

(Side note: when Felix was first diagnosed, we were told that his best chance for survival would be through a bone marrow transplant, and that a matched sibling donor was the absolute best option. I was convinced Lydia would be the donor who would save his life. I was so grateful Felix had a sibling to make that possible. When we got the news that Lydia wasn’t a match, I locked myself in a bathroom and screamed at God. How could he let this happen?? But God had other plans.)

* * *

sleeping felixIf I’m completely honest, I still have trouble trusting that God will continue to follow through. I’m constantly terrified that something awful and unexpected is going to creep up and we’re going to lose him anyway. (Or more likely, that he will still suffer long-term health or development problems.)

But I don’t want to lose sight of the miracles we’ve already seen. God has brought us this far and I am learning to trust that God will see us through to the end.

Thanks for walking through this with me.

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!

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