Following the successful surgery yesterday, we spent the following 24 hours in the ICU.  Unfortunately, between the after-effects of surgery, the variety of medications for pain; sedation, seizure, nausea, constipation, and the general constant noise of the monitors and business of the ICU, Amber decided she didn’t want to sleep.  So while I went to bed around 10 PM and swapped with Caron at 2AM, we each got around 4 hours of sleep, Amber got a total of maybe 30 minutes of sleep.  By the time morning rolled around, the combination of exhaustion and medications had her very disoriented, and was messing with her vision.  She couldn’t remember where she was, at one point even thinking she was outside.  She told me it looked like I had another nose coming out of my cheek, and then she thought there was a dragon flying around the room.

And – she was cranky, like any 6 year old would be after 24+ hours awake.  Heck, I would be cranky too if I had gone through what she has been through. And this manifested itself repeatedly through the day with her breaking into sobs of despair, wailing through the tears about how much she misses home.

As her parents, this is all heartbreaking to watch.  But oddly, it is much less concerning than it would have been 6 weeks ago when we started this.  Our baseline has been reset.  It’s not that we’ve become numb to this, it’s just that we have a better understanding and appreciation of the risks and impacts now, and we’ve come to know and trust the people taking care of Amber.  We don’t jump every time one of the monitors beeps now.  If the worst thing she experiences coming out of one of these surgeries is an imaginary dragon, then that is far better than what we thought our best cases might be 6 weeks ago.

But the real Dragons, the unknown, the uncharted territory, lie ahead of us, and not so far away anymore.  Amber will be getting her wish of heading home soon.  And while there is tremendous relief in this, it is also a bit terrifying to know we will be the sole caregivers for her again, with some new responsibilities beyond what our parenting role had been before.  But, we embrace this, we will do whatever needs to be done.  And we are very appreciative for the support of our family and friends in helping us through this, and through the scarier Dragons that loom further into the future.

Amber was cleared to return to her room on the eight floor shortly after 1:00, and got to take a short nap before dinner.  A little real food in her system helped cheer her up a bit, and then she let me cuddle with her in her bed while we watched some TV (her favorite show: DC Super Hero Girls) until those little eyes couldn’t stay open any longer around 8:00.  As Caron and I both do with Amber just before she falls asleep, we said the Rosary, and she is now in a deep, peaceful sleep.

And as I sit here next to her bed, writing this blog post, watching my beautiful little angel snooze, I thank God for this time with her.  We have a sense of some of the major challenges ahead of us, but we don’t know what the future will be.  We do know, however, what the past 6+ weeks have been, and what could have happened.  Dragons or not, we are going to appreciate every day we get with our family.

Amber is out of surgery, and is resting comfortably in the PICU. Everything went well – both the port and the skull flap procedures were successful, with nothing unexpected. She’ll remain in the PICU overnight, and be back up to the “regular” room tomorrow afternoon. But now the PICU is far less terrifying than when we were here before, and we have some very friendly and familiar faces taking care of us (we are with Nurse Alex right now, one of our favorites).

And, at Amber’s request, the surgeons also took care of her doll, Lily. Lily also did well, also getting both a port and a skull flap, and is resting comfortably with Amber. And you if you look close, you’ll see that Cutie, Lily’s teddy bear, also received some surgical attention.

Now for some simple R&R, a normal food menu for dinner tonight, then we get back to the PT/OT maybe tomorrow (or Saturday), and keep working toward getting home …

Thank you, God, for bringing Amber through today’s surgery so well. And thank you to the large team of folks here at CCMC taking such good care of her.

Today ends our sixth week of this journey, this epic rollercoaster. While we realize we are not the first ones to have followed this path, we also recognize that it is not a common path that everyone finds themself on. We also recognize that the vast amount of support we’ve received, of prayer being offered for Amber, of love being expressed for our family, is not something that all on this path are fortunate enough to receive. We are truly appreciative for this blessing, and know that there will be a time in the future where we will be able to pay this forward ourselves.

Today was another busy day. I wake up this morning in Amber’s room, and see Amber starting to wake too. I see Amber shifting her legs around, bouncing them up and down a bit. Noting that this is before my first coffee of the day, it takes me a moment to realize that I used the word “legs”, in plural. While Amber has been able to muster some hip movement, and swing that left leg into a few steps before, this was different – the hip, the knee, the ankle were all moving, in sync. By the end of today, we had Amber walk almost 30 feet down the hall, with her leg brace and walker supporting her, and the therapist providing balance. That leg is rapidly coming back to strength at a pace surprising to even the therapists. We still have a lot of work on that left leg, but wow – incredible progress.

Still much work to do with the left arm too. Little intentional movement still, but “little” is far better than “zero”. The race, as I see it, is to see how much ground we can gain before we start the radiation treatment, which is now two weeks away. I expect that her physical recovery will slow when she is also undergoing these treatments. But again, “slow” is also far better than “stop”, and we will work with Amber for as long as it takes.

Tomorrow is a big day. Amber’s surgery to replace the skull flap and install a port is scheduled for 8:40AM – 1:00 PM, and she will recover in the ICU for the following 24 hours before returning to our normal room. All signs point toward a smooth, standard procedure. But please, we ask for prayer for a successful surgery, for the surgeons performing the surgery, for a rapid recovery, and for continued progress. We will post an update here as soon as we can after the surgery.

If all goes well tomorrow, we are hopeful for a return home next week!

(Warning: long but positive post ahead)

Actually, it’s not brain surgery at all — as far as anyone can tell, the MRI shows no tumor regrowth, so Thursday’s surgery will “just” be reinstallation of the skull flap, and no additional surgery to do anything to the brain is necessary!

This really is about as good as we could have hoped for, so we are celebrating this news!

As Dr. Martin was explaining the MRI results to us this morning, it struck me how he talks about the brain, about the surgical process. Clearly, he has been doing this for a while, so I joked with him that he makes this sound “simple”. His reply was a witty “well, it’s not quite rocket science!” And then he pointed me to this Brain Surgeon sketch on Youtube – it’s a good laugh, worth 2 minutes to watch.

[youtube https://www.youtube.com/watch?v=THNPmhBl-8I]

Starting off with this good news, the day just seemed to accelerate from there.

We met with the Radiation Oncologist from Hartford Hospital, who will be coordinating the radiation therapy for Amber. We will be meeting with her to start the process next Thursday, and immediately jumping into 6 weeks of daily radiation treatments. Nicely enough, she is looking to coordinate with our local hospital (Backus in Norwich), so that we can receive the treatments with only a 15 minute drive, instead of 50 minutes up to Hartford!

Of course, receiving the treatments in Norwich only makes sense if Amber is back home … and we are indeed talking about bringing her home in the near future! We will assess things after this Thursday’s surgery, but if everything looks good, and PT/OT say she is ready, then we may be looking at next week! So the discharge nurse came and introduced herself, and started discussion with us about the equipment and supplies we’ll need. After 41 days here in CCMC, it’s weird to think about being back home, but this will a great boost to Amber’s emotional health.

And then with PT today, Amber got to try out that new leg brace, and was able to stand on her own two legs, with no support from anyone else (though we were all within 1/2 inch of her just in case, of course). After some exhausting exercise, we got a new wheel chair to prepare for home. A simple wheel chair, striking because of the symbolism – we no longer need all the crazy straps and supports of the one Amber has been using up to this point. We also got a walker for her, to continue exercising those legs until she no longer needs the assistance.

We then put the new wheelchair to good use, with a trip outside. Sunny, breezy, beautiful. Just what Amber (and I) needed.

We wrapped up the day with some family visitors, which kept Amber in high spirits. I’m hoping the food they brought for me wasn’t meant to be shared with Caron, because I destroyed the whole tray in one sitting.

By the way – thank you to those who commented here or reached out to us directly to suggest a port as a resolution to the challenges with the IV. That reminded me to discuss with the doctors here, as we had previously discussed a port as having application for some of the cancer treatments in the future. From today’s conversations, everyone has agreed that a port will be inserted during the surgery this Thursday, instead of during a separate surgery later. And my little girl has had more than enough procedures over the past 41 days, so we’re very happy to avoid additional surgeries!

So today is a day of thanks. Thanks to all of you who have been praying for Amber, thanks to the Doctors, Nurses, and all of the staff here at CCMC and at Backus hospital for getting us this far and putting us on a path toward recovery, and thanks to God for helping Amber stay strong, body and soul. The support for Amber has been overwhelming. The community of people that we have learned are praying for Amber, from many Churches, many schools, many organizations, is overwhelming. The personal notes we’ve received, privately and in the comments of this blog, from others who have gone through their own health battles, especially those with cancer experiences, has been incredibly touching. We are truly blessed to have this support for Amber.

But we are far from done. We continue to make great progress on the Elephant, as Amber continues to work hard to recover from the stroke. But the Whale is looming larger than ever now, becoming more real to us as we have formally scheduled the beginning of the cancer treatment. And let’s be very, very realistic – battling Glioblastoma Multiforme is going to be very, very hard. We are preparing to put everything we have and more into this fight. We will do whatever is necessary to see Amber through this.

So we ask for continued prayer. We ask for prayers for Amber, that she may continue to gain strength and progress toward a healthy future. And we ask for prayers for the medical professionals providing for Amber’s care, that they may be blessed for the work they do, and that they continue to have the knowledge, clarity, and will to propel Amber toward health.

We started our day around 6:30 AM, with final prep for the MRI, and our trip to radiology on the first floor for 7:30. Amber was asleep (sedated) for the scan. Everything went smoothly, and we were back in the room by 10.

Now, we wait for results. We are bracing ourselves, though we are not quite sure what we are bracing for. We already know we are facing a very serious, very aggressive brain cancer. We already know that a tumor grew and burst, causing the stroke we have been recovering from for 40 days. We know that Amber goes into surgery on Thursday to have the skull flap re-inserted, and that if there is any regrowth of the original tumor, it will be extracted at that time. And we know that we are going to start going on the attack against the cancer in a few weeks, with all the energy and Faith we have. But still, we brace ourselves for the possibility of new information, of some new direction or impact.

On a lighter note though – Amber’s physical recovery continues to improve, and today we got her new leg brace! This brace will help support her weight on her left leg while we continue to build up its strength, so she can begin walking sooner. And check out the design she picked out:

Just as this brace will help hold up Amber’s body, we pray that God will hold up Amber’s spirit, and will give us the strength to hold up Amber through this whole journey.

When we first arrived at CCMC, a very long 37 days ago, I noticed an informational video looping repeatedly on a TV screen in the hallway, with a short segment showing many of the staff wearing superhero shirts or costumes. During the next week, I remember hearing about “Superhero Day”, and how it was coming on April 27. At the time, a few days into our journey, I remember having two conflicting reactions to this – one reaction stemming from my difficulty in accepting this surreal set of events, not believing that we could possibly still be here by the time April 27 arrives; the other stemming from the deep despair of the moment, worried that we may not still be here by April 27.

Well, we were definitely here today, and Amber fit right in among the Superheroes!!

Superhero Day is a special day at CCMC. As their site puts it,”In honor of National Superhero Day, caped crusaders took a break from fighting crime to visit with our patients who are fighting battles of their own.”

Amber is fighting a battle, fighting it hard. Today, PT brought a walker for her to try standing with. They helped her climb out of bed and grab onto it, and encouraged her to try to take a few steps. With them supporting her torso, and helping direct her left foot, she started pushing the walker forward, taking a few steps. And then a few more. Next thing we know, she is leading the way out the door of her room, into the hallway, and across to the nurses station, dragging the two therapists along with her! By the time she makes it back, a total trip of about 40-50 feet, she is exhausted and needs help climbing back into bed – but, she did it, and was proud of herself (almost as proud of herself as her Mom and Dad were of her!). Yes, she needed a lot of help from the therapists, but it doesn’t matter. She has the determination, and the motivation, to work real hard at this. And, over time, if we can maintain this momentum and the positive attitude, she will be more and more self-sufficient, and defeat both this evil villain and the next.

When I look back 37 days, and re-read some of our earliest posts to this blog, I am truly amazed at the distance we’ve already come. We have avoided posting pictures of Amber during this time – but feel it appropriate now, to contrast our current state against where we were at the beginning. Here is a link to a picture from March 22, hours after her first surgery. I am including this as a link, instead of putting the full picture right here, as some may find the image alarming, or at least may not wish to show it to children – it is of Amber lying in bed in a hospital gown, bandaged and hooked to many machines.

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Next week is a big week. Monday we have an MRI, and are expecting to receive the results on Tuesday. This MRI is checking on the recovery of the brain, and looking for any tumor regrowth. Then on Thursday, we go into surgery – first removing any bits of tumor that have returned, then replacing the piece of skull that was removed on March 22.

In preparation for this big week, we ask for continued prayer for Amber, that she continues to be strong in her determination, motivation, and Faith (these are her superhero powers!); we pray that it is within God’s will to grant us a miracle, no matter how big or small, toward Amber’s recovery; we pray that God continue to provide strength and clarity to the medical professionals providing for Amber’s care; and we pray for the strength to accept God’s will, whatever it may be.

And we thank our friends for organizing a special prayer service for Amber, this Sunday night at 7 PM, at our Church, St. Mary’s in Baltic CT. If you cannot attend in person, we invite you to join us in prayer at this time, wherever you may be located.

“You’re much stronger than you think you are. Trust me.” (All-Star Superman) Amber is proving this true, both about herself, and about us, every step of this journey.

Oatmeal and spinach are great, but … sometimes you just need a little bacon! Amber started the day with Speech Therapy bringing in some new breakfast items – things that are harder to chew and swallow, to see if Amber is ready for a “regular” menu. Waffles, whole strawberries, and … bacon! The bacon was a little tough, but Amber gnawed her way through. Following the successful breakfast test, Amber’s menu has been upgraded; she now can order hotdogs and hamburgers, carrot and celery sticks, chicken nuggets. She still needs to eat slowly and carefully, but it’s nice to have her eating pretty much back to normal.

Unfortunately, Amber has caught a bit of a cold along the way though. Lots of sniffling and coughing, enough to upset her stomach. So, breakfast didn’t stay in her stomach very long. But, the other meals stayed down, and she is doing well.

Then, as usual, on to OT and PT. Man, I wish I had Amber’s perseverance when it comes to exercise. An hour on the swings working her arms and balance, and an hour kneeling and standing, kicking her new rainbow-colored kickball.

We are just a handful of days away from the next big milestones – Monday is the MRI to see how the brain is doing and determine if there is any primary tumor regrowth (we won’t get the results until Tuesday, though), and Thursday (May 3) is the surgery to replace the skull flap. And then, we begin eating the whale shortly after.

But hopefully, with a little more perseverance over the next 2 weeks, we’ll have enough of the elephant eaten that we can come home before we tackle that whale. I think that’s just what we’ll need to renew Amber’s appetite, and re-energize all of our spirits.

Another fairly quiet day. No Physical, Occupational, or Speech Therapy today, just me and Amber spending the day together. But between meals, G-tube feedings, medications, checking vitals, it’s amazing how quickly the day flies by. We spent some time in the morning coloring together, and watched some Minecraft videos on YouTube together (she still has to explain to me everytime why she wants to watch someone else play, instead of just playing the game herself). And later in the afternoon, we got to take a walk outside, in the sun, with Mem and Pep visiting. A short nap afterwards, then her brother and sisters came to visit.

But during the quieter moments, scattered throughout the day, she would gather up the courage to ask a question or two. Big questions. The Questions. The questions no parent wants to ever have to address. The questions that show just how much your child does understand what’s going on, and how little you can actually shield them from.

What happened?

Why?

Why me?

What’s going to happen?

When can I go home?

Will this happen to my children?

And bigger questions, that I can’t quite bring myself to write here.

And of course, she wants answers. So I do my best to answer, to be honest, but to do so at a 6 year old level – and learn along the way that I apparently don’t give 6 year olds enough credit.

It’s hard. But it is necessary. She wants to know. She deserves to know. And she is showing the bravery and uncanny maturity of someone who understands there is trouble ahead, and is bracing herself to face it, head on. She is still a 6 year old, and she is scared, but it is clear to me that she knows 100% that Caron and I are with her every step, that she is not alone in this. And so a reasonable level of honest detail from us, and a ton of love and reassurance, helps keep her courage.

And her Faith is strong too – I have been saying the Rosary when I stay overnight with her (alternating with Caron), usually after she falls asleep. Caron, though, has been praying with her before she falls asleep. Earlier this week, Amber asked me if I would “pray the Rosary over her, like Mama does”, because she understands that we are asking for God’s help, through Mary, to help her get healthy. She knows that as long as we ask, God will help us.

Possibly most intriguing to me, though, is seeing her take ownership of the things in her control. Today, lunch was pasta with a side of mushy spinach. Surprisingly, she dove right into the spinach, ate up as much as she could. She never would have touched spinach like this at home, so I asked her why she was eating it instead of the pasta.

“Daddy, spinach makes you strong. And when I get strong, I can go home.”

God, please grant Amber strength for the journey ahead. I can’t wait for Amber to come home …

Today was a fairly routine day. Which is unusual, because we don’t really have much of a regular routine. But, one is starting to develop, and having some regularity, some predictability, is a good thing.

After a breakfast of oatmeal, Amber and I did a little bit of coloring. Again, she did a great job coloring inside the lines (better than me, anyway!), so that right-hand control and vision are recovering well. She can’t do it long, though, before it tires her hand out, but we are getting further each time.

But, as always, I like to push things a bit. At the bottom of the page she was coloring were a couple of words, so I asked her to read them. It took her a few seconds, but very clearly (and correctly) read them out as “Queen Cat”! This is an improvement from a few days ago, where reading was a frustrating exercise for her.

Occupational Therapy and Speech Therapy came to visit shortly after, and they brought Amber down to the Play Room to play some Connect Four. Between having her sit upright for the game, making her right hand support her left hand to pick up and drop the checkers, and having Amber speak to ask for more pieces or state how many were in a row, they were really pushing her – and she was pushing right through quite well, and having fun too.

She was pretty tired after, but enjoyed a pasta lunch, and then a trip to the PT gym, where she got to ride on a swing while exercising!

Finally a short nap before dinner, and some quiet TV time before prayers and bed.

She misses home terribly, misses her cat Rea, her friends, her toys. She even told us she wants to come home to catch up on homework, because she misses school so much. And unfortunately, we have at least a few more weeks in this hospital room. But, with a little bit of routine to make life less chaotic, she is establishing her own “new normal”.

Her courage and strength amaze me.

Four weeks ago today, I carried an unconscious, lifeless Amber into the Backus Hospital Emergency Department, not having a clue what kind of journey was beginning for us. And worse, not sure if I would ever see her awake again. Four weeks later, Amber is not only awake, but is smiling, talking, and giving me sass. Yes, still a long road ahead. But for both Caron and me, our baseline has been dramatically reset; we are far more appreciative of every minute, of every action than we ever would have imagined.

Today was another day of progress, with several new “firsts”: sitting on a toilet, blowing bubbles, eating three meals (pancakes for breakfast, mac and cheese for lunch, and pasta for dinner), playing a board game. 30 days ago, these would have been a normal part of the day; today, I am ecstatic with each of these! She continues to make great progress day after day, and we will do whatever it takes to keep that momentum moving.

Her strength amazes me. She continues to work hard, until she falls asleep exhausted at the end of the day. But she also still gives me “the look”, that smirk and eye roll, the “did you really just say/do that daddy?” expression, reminding me that she is very much my little girl.

Every day she understands a little more about what is going on. Her biggest personal challenge right now is just that she misses home so much, she just wants to get back to her bed, with her cat Rea, with her toys, with her family. This brings her to tears multiple times a day – but it is also a source of motivation for her, because she knows that to go home, she has to “get strong”, and that’s what the hospital is helping her do.

She is a 6 year old (sorry, 6 “and a half” year old) supergirl.

Over the past few weeks, we have commented many times on our ongoing experience here with Connecticut Children’s Medical Center. But in this post marking our four week milestone, I’d like to express special thanks to the people at the Backus Hospital Emergency Department; Dr Adams, the ED team, the Lifestar team, and any others that March 22 morning – your quick assessment and actions that morning were the difference between hope and despair for us. I cannot express the depth of my appreciation for your work, your skill, and the fact that Amber is here with us today because of you. I ask that the prayerful readers of this post join me in praying that God bless these medical professionals, and all medical professionals around the globe, that they may have the strength, clarity, and will to apply their skill everytime the need arises, providing great care as they did for Amber.