You know that saying, “No news is good news”? If only it was true this time.
I wish I could say that life has been uneventful during the last several weeks I’ve been quiet here on the blog. Unfortunately, that’s not the case. It has been busy, chaotic and tremendously difficult.
On the one hand, we’re loving every minute with our little Matty Bug. He’s a 5-month-old seriously chunky monkey who keeps us smiling and laughing all the time! He’s easily the happiest baby I’ve ever met and is the personification of pure joy. On the other hand, Garnet’s not been well. To borrow a phrase from author/blogger Glennon Doyle Melton, life has been both beautiful and brutal; life is “brutiful.”
The last time I wrote about Garnet’s condition, he had just returned from a scan at Hershey Medical Center which showed that his tumor had gotten a bit smaller. At his next scan in early June, the MRI showed a new spot. UGH. The doctor couldn’t be completely certain that it was new tumor growth, so it was a matter of playing “wait and see.” (I hate that game, by the way.) It was also decided that Garnet would take a much-needed break from his oral chemo, which he had been taking daily for six months.
We followed up last week and the spot was still there. It hadn’t grown, but it hadn’t gone away. It seems that the chemo Garnet has been taking on and off since his diagnosis in 2010 is no longer working. Dammit.
Physically, the disease hasn’t been so kind to Garnet lately. He’s been experiencing swelling in his brain which has caused a host of issues including temporary paralysis of his right side and a great amount of difficulty with his speech. He’s on steroids to manage the symptoms, but – clearly – we’re back in the fight again.
The plan moving forward is more aggressive. Garnet details it all here on his blog. Basically, it involves surgery on August 7 to implant a medical device for receiving infusions directly into his brain and a cocktail of six different chemo agents. (Too bad chemo cocktails aren’t nearly as exciting as, say, Cosmos or Martinis!) We were relieved to find out that the treatment is only twice a month and that most patients tolerate it very well.
This is obviously life-changing for us. But, to be fair, nothing about our family’s experience with brain cancer hasn’t altered our life. This sucks. There’s just no other way to put it.
There was an evening last week when Garnet was physically unable to speak, so I was on the phone with his doctor while simultaneously changing a poopy diaper. The phone was cradled between my head and shoulder, I had a pen tucked under my neck, a dirty wipe in one hand, baby feet in the other and was scrounging around for a piece of paper to write down Garnet’s medication instructions. In that moment, running purely on adrenaline and a prayer, I felt like I was having an out-of-body experience. Is this really our life?!?
Seeing my husband suffer is emotionally devastating. There have been a few occasions recently when he couldn’t even say my name. I simply cannot describe that kind of heartache. Also, for the first time, our son Will is seeing the cruel effects of his dad’s disease. He has been terrified and very confused. In a childlike way, he asked me if there’s a cure for cancer and I had to tell him no.
“So, Daddy’s going to be sick forever??”
“I hope not, buddy.”
My maternal instinct is to want to protect my boys from this cruel world. Still, I believe in being honest with them. Matty, of course, is completely oblivious to what’s going on. Will was 2-years-old when his dad was first diagnosed. This time – at the ripe old age of six! – he sort of understands. One day, I hope both of our boys will know what I know: That their dad, even at his most physically compromised, puts their well-being first. That he still goes to work because he is dedicated, loyal and loves what he does for a living. That he pushes himself and doesn’t give up because he is braver than anyone else I know and loves me and the boys just that much.
I’m really grateful for family, friends, my husband’s co-workers, our neighbors and even strangers who have mobilized, once again, to take care of us. We’re really blessed to have such a wonderful support system. And, Lord knows, we’re going to need some serious support in the weeks and months to come.
Now, let’s saddle up and kick some cancer butt.
It has been a few months since I’ve had the time to blog. I love writing – it’s a sort of release for me. Free therapy, if you will. It wasn’t really my intention to stay away so long. But, life’s been simultaneously beautiful and so very hard that I haven’t had much time or energy to dedicate to this passion of mine.
I’m taking the time today because I want to update you about an acquaintance who passed away yesterday. Erin Youngbar, who I wrote about here, is finally at rest after an eighteen-month battle with brain cancer. She leaves behind a husband and three young children. My heart is so full that I scarcely have the words to express the depth of the impact that both her life and death have had on me.
My writing cannot do her story justice, so I will just point you to her blog and let her words speak on their own.
In many ways, the Youngbar family’s story is too close for comfort. This journey with brain cancer is a brutally painful one. I am sad. I’m angry. And, I’m so heavyhearted. I don’t have the answer to the elusive question of “Why?” behind this level of suffering, nor do I know if I ever will.
Still, in the midst of all this pain, something else happened yesterday. Shortly after I heard the news about Erin’s death, as hot tears streamed down my face, the skies opened up and poured down enough rain to last all summer. Then, in the early evening, the sun came back out and all over Facebook, up popped images of a rainbow. In some places, a double rainbow. The same thing happened the afternoon following the death of my dear friend Meghan‘s son, Gabriel. It was as if Heaven itself was weeping along with their families, then somehow … inexplicably … sending a gentle beacon of hope.
Please keep Erin’s family close in prayer as they grieve such a profound loss.
Chances are, at some point, someone will grow tired of me posting pictures of the planet’s cutest baby. BUT – and I say this with the utmost amount of love and respect – I don’t care! :) After all, we prayed for him for so long – and I’m including you guys in that “we” – it’s only right that I wallpaper the blog with pictures of this little blessing. (Plus, I often post pictures on social media, but I realize that not all my friends/blog readers are on Facebook, so I like to re-post here for their sake.)
It blows my mind how much this not-so-little guy is growing. My six-week-old baby has started wearing 3-month clothing … how did that happen?! Speaking of clothes, as I was getting Matty dressed this morning, I looked down at my shirt … then his … and suddenly realized that we match today! He apparently thought it was as funny as I did, and decided to ham it up for the camera accordingly.
So, enjoy … and happy Friday, friends!
Yesterday’s MRI showed Garnet’s tumor shrank a little since the last scan 6 weeks ago! It’s a slow-growing tumor, so the doctor reaffirmed that it will also be slow to respond to treatment. But, we’re headed in the right direction! Time to do a happy dance! If you need some music, may I suggest this:
In the meantime, please enjoy more pictures of our little guy. Because a) I can’t help myself and b) baby smiles are so darn cute.
It’s been one month – actually, almost 5 weeks – since little Matty joined our family! I can hardly believe it. It seems both like forever ago and just yesterday that I first laid eyes on his sweet little face. He’s a super smiley baby and has such a sweet disposition.
Already, Matty has secured his spot as having the most awesome hair in the family! :) An ultrasound tech even told us during the pregnancy that she could see a lot of hair on his head in utero. I guess I sort of discounted it, though, since Will was bald for pretty much the first two years of his life — this is a whole new ball game for us!
Speaking of my first baby, Will turned six this past weekend. We celebrated with a family party on Saturday and a party with his friends on Sunday at a place that I refer to as “Chuck-E-Cheese Lite.” Because, YES. We are crazy. Will thinks his birthday is a national holiday at this stage of life! But, as his mother, I have to agree that it’s a pretty big deal. Six years ago, he changed my life forever in the best possible way. He keeps me on my toes … challenged, laughing and always so proud of the little boy he is and is becoming.
Overall, we’re happy and doing very well. We’re totally in love with our new little family member. Well, most of us … most of the time. Will has struggled with sibling jealousy. The good thing about being 6-years-old: He can tell us exactly how he’s feeling. The bad thing about being 6-years-old: He can tell us exactly how he’s feeling! He recently declared that we could sell his little brother. *Sigh*. This is what happens when two people with Communications degrees produce a child: Just as Will is destined to wear glasses because we’re both terribly nearsighted, he seems to be morphing into quite the little wordsmith. ;)
Despite being on cloud nine about our little “Matty Bug,” it would be wrong of me to suggest that everything’s been rosy since coming home from the hospital. Having a newborn is super hard, lovingly exhaustive work. I may have forgotten this fact in the six years that have lapsed between my two boys! The last few weeks have felt like a blur. Everyday activities, such as showers, sleep and blogging are now infrequent luxuries. I have had moments of feeling completely overwhelmed with my new responsibilities. And, in complete candor, “Angry Mommy” made a guest appearance one afternoon when Will chose to talk back at the very same moment that the baby was screaming so wildly that you could see his tonsils trembling. Fellow mamas, I’m certain we’ve all been there. Can I get an amen?
Today, in particular, has been a rough day. Garnet is at Hershey getting an MRI and following up with his neuro-oncologist as he completes his third round of chemo. He’ll soon be starting his fourth consecutive month of chemo and the results of today’s scan will determine how many more months he’ll need to continue treatment. I was so sad when he left this morning because I really wanted to be with him, but it’s just not smart to take the baby into a hospital setting at the moment. Later today, I was on the phone with a healthcare provider and in response to a question I said, “I just had a baby last month and my husband is on chemo.” I started to choke on the words as they left my mouth. Once I was off the phone, I couldn’t hold the tears back any longer. After more than three years, our situation usually doesn’t faze me on a daily basis. But, sometimes when I say the words out loud, they feel just as bad as they sound. No matter how long we go through this, scan days/weeks are always hard. Then, I look at our baby’s sweet, sleeping face and the stakes seem that much higher.
The other week, a friend called to tell me that she was bringing dinner to us that evening (cue “Hallelujah Chorus”). She asked me the simple, yet loaded, question: “How are you doing?” For a moment, I thought about answering “Fine.” But, I thought better of it and said, “Do you really want to know?” I proceeded to spew the laundry list of things that had left me feeling emotionally raw. We talked for a few minutes, and she empathized, reminding me that her two youngest girls are also 6 years apart. At the end of the conversation, I felt better for having authentically shared my feelings. And, you know what? That night, my friend not only brought a dinner of comfort food for our bodies and souls, she also brought a sweet, encouraging card and flowers to brighten my day.
The moral of this story is not “Share Feelings = Get Stuff.” Rather, this experience reminded me that nothing good usually results from stuffing my feelings. Vulnerability, however frightening it may feel to succumb to, is the secret to intimacy and usually the key that unlocks healing. Even if it is just healing from a super bad day.
I think that pretty much covers everything here. I have tried to recall how long it was after Will was born that I felt like life normalized and the “fog lifted,” but it’s hard for me to remember. As the weeks progress, I hope I’ll be able to steal away more often and get back to more of a regular routine. In the meantime, please enjoy the following obligatory pictures of the kids. :)
P.S. I now have kids. Plural. How awesome is that?!
Today our little Matty is a week old! Perhaps to be expected with a newborn, life has been a little chaotic here in our household. We’ve been to the hospital every morning this week for blood work to resolve jaundice, juggling round-the-clock feedings and indulging in those few minutes of sleep that’s been afforded. We’re all adjusting to new roles and figuring out our place in this world based on the changing family dynamic.
As for Will, he’s settling comfortably into his role of doting big brother. He’s a super helper to me. Each day, he chooses Matty’s outfit, fetches clean diapers and tosses the dirty ones — of course, he draws the line at wet diapers!
He’s made quite a few humorous musings and observations in the time since his brother arrived, and I wanted to share the few that I’ve been awake enough to remember:
1. “Look, he has feet!” — As my friend Laura said when I shared this with her, “Yeah, they come with those.” :)
2. With regard to breastfeeding: “You know, Mommy … you’re sort of like a cow.” Indeed. Moo.
3. “When’s Matthew going to be big enough to play with me? Because, he’s sort of boring right now.”
4. Picking up a disposable nursing pad: “What’s this, a mask?”
and, my personal favorite:
5. On my post-pregnancy shape: “Your belly’s still big like when you were pregnant. Are you sure there’s not another baby in there?”
Out of the mouth of babes, my friends. He’s lucky he’s so cute. :)
“Matty” arrived on Friday, February 21, at 10:27 a.m. coming in at 7 pounds, 11 ounces and 20.5 inches long.
We decided on his name soon after we discovered I was pregnant. We wanted something that would convey what a miracle he is and Matthew means “Gift of God.” His middle name, Isaac, means “Laughter” and, let’s face it: We sure could use some of that in our life! The name is also significant because Isaac was the long-awaited son of Abraham and Sarah in the Bible who struggled for years with infertility.
My first words to this sweet, lovable, dream-come-true of a boy (through sobs of joy and relief) were simply, “Hi, buddy.”
We made it.
We’re in the home stretch. Quite literally. Our little boy will be born this Friday, unless he decides to come sooner.
It’s hard to believe that after many months of what has admittedly been a complicated and difficult pregnancy to endure, he will be here. I’m elated and impatient all at the same time. Mostly, I’m just ready to meet him. I can’t really imagine what our life is going to look like once he’s here and a part of it. I’ve dreamed about him for so long and I’ve even seen his little face on more ultrasound monitors than I can count … but I still can’t imagine it.
One of my midwives let me know several months ago that due to my “advanced maternal age” (blah and whatever) there was a deadline of 39 weeks for his arrival. When she told me that, I was still getting weekly progesterone shots and was in the midst of bed rest and experiencing early contractions. I never imagined that I’d make it to 39 weeks. But, here we are. 39 weeks along in 4 days.
I have felt conflicted about his arrival plans. On the one hand, I’ve been rooting for him to stay in utero as long as possible. After our son Will was born premature, I became involved with the March of Dimes, and I know from their research that 39 weeks is ideal for fetal development. On the other hand, I’ve been so miserable here toward the end of the pregnancy and have had so many false alarms over the past three weeks that I’m just ready for him to arrive! Ever wanted to know what 8 POUNDS of fluid looks like when retained in your calves/ankles/feet? Well, you’ll have to keep wondering, because there’s no way I’m showing you! ;)
Ever since I started wishing for a second baby, I have idealized what the birth would look like. The nature of Will’s birth was so unplanned, haphazard and not the way I wished for. I was kind of hoping for a “do-over” with this labor and delivery. You know, the stereotypical “Honey, it’s time!” … water breaks, head to the hospital, short labor and delivery, they hand me the baby, whom I get to keep with me this time instead of having him whisked away to the NICU like they did with Will, and all is right in my world full of unicorns, puppies and rainbows.
Well. Real life doesn’t work that way. Our life is anything but “typical.” We have some serious concerns and issues when it comes to my labor and delivery. One that has nothing to do with the baby or the pregnancy, but certainly has an effect on it: Garnet takes a sleeping pill and his chemo every night. If he sleeps through the night, all is well with the world. If he is woken up, he risks getting very nauseous and/or violently ill. First of all, I hate to think of him being unable to enjoy or be truly present at the birth of his son. Second, we’re not even sure how lucid he would be to drive me to the hospital in the middle of the night.
We have plenty of family/friends/neighbors who are on standby to help us out if this situation were to present itself. But, that being said, having a more managed, planned birth has gradually become more appealing to us. It probably wouldn’t have been our choice six years ago or even six months ago. But, this is our life now, and that’s all we have to work with. There is some comfort in knowing when we are supposed to arrive at the hospital to deliver our son rather than leaving it all to chance. That said, we’re still open to his arrival whenever, trusting that when the time comes and however he makes his entry into the world, it will be his moment and it will be right.
I expect you likely won’t hear from me again until I have delivered. In the meantime, please enjoy the following photo sent to me by my friend, Erica. (The belly is NOT mine, for the record … but I echo the sentiment!)
P.S. I expect that you’ll have this song stuck in your head for the rest of the day!