Lace up those walking shoes again.....Levi needs you to rally behind him!

As we move into this New Year we are thankful for the many who continue to check in with us. We have kind of fallen off the wagon of blogging and social media, not to hide, but mostly because we have three very active and very crazy boys. This past year has not been without its ups and down, but one thing that we have seen as we look back is the Lord’s presence as we have navigated some rough waters. But as it pertains to Levi and his progress we have much to celebrate.

He continues with his weekly routine of PT/OT and horseback riding therapy. We have added into the mix craino-sacral therapy (an osteopathic medicine), working with a nutritionist and swimming therapy. Day in and day out, Levi’s recovery demands a lot of additional time, but the investment is well worth it, especially as we see him to continue to progress the way he has. The faith that we have is that it will be the sum total of all that Levi does that will help him reach whatever level of healing and recovery he will achieve.

We were blessed last year by the many who partnered with us and the Mitchell Thorp Foundation to help us give Levi the care that he needs. They are a foundation that specifically focuses on supporting families whose children suffer from life-threatening illness, diseases and disorders. As a result of our partnership, ALL of Levis medical expenses as well as non-insurance covered therapies were paid for by the foundation. We owe a whole lot of thanks to our team.

Because our goal is to continue to give Levi the care and support he needs, and because we still are in need of help with these extra expenses we are partnering with the Mitchell Thorp Foundation again this year for their 5^th Annual Heart for Hope 5K. Please consider joining in the fun at the walk on Feb 1, we plan on having a lot of fun!  See website and flyer for additional details.  Event Details.  Please feel free to pass this along!  To provide direct sponsorship to Levi's team click here.

18 months later.....

One of the many afternoons of patching.

Finally an update on Levi's on goings.  So many of the daily life activities of his our life now seem so "normal" to me, it's hard for me to recognize that these things are not "normal", they are the components that make up a child that is so, so SO much work to care for.  A very, very sweet child, that makes it all worth it.  So let's get started.....

I've always preferred to get the bad new first, so here it is.  We lost the long, hard fight to save Levi's right eye.  It's amazing how language or choice of words makes the reality of his vision easier for me to cope.  I prefer to use the words, "no vision" in his right eye, rather than the "b-word"...blind.  That one stings.  Eyes are funny because you don't realize that most of us have a back up, that if something were to happen, albeit freak accident to one of our eyes, no biggie, we'll be thankful for the back up eye.  Levi's running off the back up and so we work to protect it.  

We were patching 3 hours a day for the last several months in one last ditch effort and over those months we had moments where we thought over and over again that we were succeeding.  We came to find out that Levi is an expert cheater, and that if there were the slightest opening out of his left eye, that he would appear to be seeing out of his right eye.  I became cautiously optimistic that we had done it, we pushed through and did it!!!  Then time and time again, we figured out another way that Levi had tricked us again.  As this went on I became more and more certain that he couldn't see anything out of his right eye.  I started to welcome the ending of this torture for him (and those trying to help him) and almost couldn't wait to get to the appointment so we could end it already.  But then there was that nagging, "what if" that always crept us.  What if we just patched a little more every day, or if he would suddenly break through.  Over the last three months my will to keep his eye was broken.  It just couldn't take anymore and I wanted to just move on.  So as we went to his doctor, I expected everything that happened.  I knew. I knew what we would be told, but somehow it still hurt in the moment.  

Ice skating with Make-A-Wish

The doctor held up a toy piggy and asked Levi to point to it while the doc covered his left eye.  In all of his charm, Levi confidently would point to the pig, missing 90% of the time, obviously guessing where he would be next.  Then the doc got out a light.  He asked Levi to tell us what he saw, he answered in a sweet enthusiastic voice, "A pigeee!"  Then as the light was placed directly in front of his eye, shining in a way that would be painful for anybody, Levi said nothing.  It was clear and so sad to witness.  

Levi now wears glasses now, which are required by his doctor to protect his eye.  Thankfully, Levi doesn't mind wearing them too much and he look adorable in them!

Moving on to happier things now.  Levi has started growth hormone and wow!  It has been so fun to watch his body change and grow and get so much stronger.  At the last measurement he had grown 3" in 3 months. This med is administered in the form of a daily shot.  Fortunately shot are not something that have ever bothered me too much.  But then try sticking your baby!  I haven't been nervous like that in ages.  As we did it for the first time, Dan and I were both hesitant and I was shaking!  Fast forward a couple months and it is just part of our normal routine.  Go upstairs, bath, jammies, brush teeth, shot, read, bed.  He always liked to participate and press the button and turn the dial and then count to 10 as the med is injected.  Such a trooper.

All of his other meds have been quite stable.  We only had one issue and had to spend a morning in the ER.  Levi got to see some of his favorite ER nurses and we got to remember how much we don't like being in the hospital.  We got things sorted out and got to head home in the afternoon.

One of Levi's conditions: Diabetes insipidus (DI) is a condition characterized by excessive thirst and excretion of large amounts of severely diluted urine, with reduction of fluid intake having no effect on the concentration of the urine.  Okay, so now try to potty train.  Ya, exactly.  Over the past month we have made huge strides in this area.  He stared to wear undies at school, with good success and then we started to integrate them into his morning routine.  Then things would always fall apart after his nap. He had to go to the bathroom every 10 minutes all while not able to see (his patch was on from 3:30 to 6:30 on most evenings) and that just aggravated his patching all the more.  Since we have given up the patching, he is keeping dry most of the time, only having accidents when his DI is going crazy. (evenings)  It has made it a little challenging for me to go anywhere in the afternoon since he has to use the restroom so frequently, but we deal.  As you all know, store bathrooms are almost always at the back of the store, so imagine trying to get the three of my boys all back there, while one is saying, "I have to go, really, really bad."  

As part of our bi-annual review at physical and occupation therapy, they always ask what my goals are for Levi.  It always struck me as odd, because I assumed our goal was to return to "normal", to like Levi was before.  Now that I understand that we are working with a new normal, it makes more sense.  Anyhow, one of my goals was for Levi to be able to run and I am glad to announce that he is able to run.  He's invented a new kind of run and he loves it, usually squealing, "See how fast I am?!?!".  It's a special kind of "fast", but it's fun to see him enjoying himself.

I think this may wrap up the summary of where we are today.  I thank you for hanging in for this long post.  Please keep Levi lifted up in prayer this Tuesday January 15th, as he has his bi-annual MRI.  He will also be receiving injections of Botox to his calf to help relax some of the muscles that involuntary fight him when he tries to walk.  We head into these MRI's with the hope and expectation that there will be nothing....but that fear of the possible sometimes pops up.  Plus they are LONG days, as we have to get there at 5:30 and not eat or drink anything until he starts at 7:30.  And then pray for me as I get the bill for all of the above.

Speaking of medical bills.......have you considered joining us for the Mitchell Thorp 3K Fun Walk/Run?  Any form of support would mean the world to us, as we can continue these efforts to rehabilitate Levi and keep him healthy.  Click here to join the team/sponsor Levi  For more information about the walk Walk Info Click here

Get your walking shoes on!

We are excited to share that we have joined forces with the Mitchell Thorp Foundation in the upcoming 5K Fun Walk/Run to raise funds for Levi's continued care and recovery.  They are a foundation that specifically focuses on supporting families whose children suffer from life-threatening illness, diseases and disorders.  We feel so blessed that there is a foundation out there that is able to help us get through this next phase of Levi's recovery.  I haven't been great about keeping the blog updated, but will commit to getting up some of his recent on goings, his recovery and some pretty hard stuff that we've determined over the last several months.

Please consider joining in the fun at the walk on Feb 2,  we plan on having a lot of fun!  See website and flyer for additional details.Event Details.  Please feel free to pass this along!  To provide directed sponsorship to Levi's team click here.

The fight

Gosh this is hard.  I feel like everyday I realize more and more how different my life will be because of what Levi has gone through in this battle.  Just two days ago it dawned on me that Levi is disabled.  Yes, of course I have a wonderfully handy handicap parking placard for him, but it finally struck me that he is actually physically disabled.  And yes, I go to one physical and occupational therapy session after another, but I just didn't get it.  Or want to get it. I recall that after we got discharged from the hospital, I still fully expected Levi to be 100% back to normal, with lots of work of course.  I kept asking his doctors and therapist questions that I only wanted one answer for.  I wanted to hear that yes, of course he would continue to improve and he would be the child you used to have.  I never got those answers I wanted, I got vague hopeful answers but never the answer that I wanted for Levi.  So now, sometimes late at night, when I should be in bed, I look back at those pictures I have of Levi "before" all this.  I look at his hands and feet and his eye and I miss them.  I study them, like they were a loved one that has died.  I wonder to myself if it will always hurt this much to look at these pictures of how Levi once was.  I miss the child that he was, that I wanted to have.  I miss the life that we had.  Trying to balance the fight to continue to heal and recover verses letting go and moving forward is an act I have not yet mastered.  Instead, I fight with Levi and the rest of the family fights too as we all have to keep moving forward, no matter what the outcome is.

standing on the mountain top and kneeling on the battle ground

after our "baby" dedication for all three boys
on Aug 12, one year after surgery...
a joyous day!

We have been wanting to get an update out for about two months. August 7th was the one year out from his diagnosis and then just this last Sunday October 7th was a year out of the hospital. Levi is still CANCER FREE and we have every hope in him continuing to make a great recovery. Here are some of what gets held on the inside as we do life as a family with three amazing boys...

We have come so far and yet we still have so far to go. It has been one year since we walked out of the hospital after two months of waiting. Waiting for the diagnosis, waiting for the surgery, waiting for Levi to stabilize, waiting for him to recover…and in this we are still waiting. I do not want to be ungrateful for the miracle that is Levi’s life. If you saw him most likely at first, second and third glance you would have no clue that there was anything abnormal about him. He looks and acts like a typical 3 year old. And yet as you watch him you would see how there was something a bit different. He has a bit of a limp in one leg, when he runs one side of his body seems tight, and he can’t keep up with the other kids. When you look into his beautiful blue eyes, it may seem that one eye is not tracking quite right. You may think it is just a lazy eye thing, correctable with some eye patching a maybe a surgery. What you would not know, what we do not know fully, is that he sees poorly out of that eye, and that everyday his parents battle to patch his eye, not even with the goal of regaining vision but simply to save the eye from being shut down by the body. You would not see the struggles of having 3 year old who is a long way off from potty training because his body is unable to regulate itself on its own without extra hormones. You would not see the big brother who loves Levi dearly, but hates having to be dragged around to all his appointments and therapies, and wishes that he didn't have to patch anymore. A big brother who has already talked about when his brother will be at the same school so that he can make sure that nobody pushes him. It breaks the heart of a parent to know that kids are cruel and that Levi will be made fun of and that his big brother will be his defender…in all this I look at Levi. I look into the sweet soul God has given him, his warm heart, his engaging spirit and of all my kids I know that God has given him the ability to handle these and the many more struggles that will hit his life.

The journey this past year has been one that has brought our family closer together. In many ways it is the grace of God that our daily struggles have not driven us apart. It ain’t easy to say the least, yet as we have hit rough patches along the way, our family and friends have been there to support us. More than that though is the truth of who God is, what it means to live by faith, has become a reality for our lives. This last week we sung the chorus of this song at the end of church and it spoke to both Kara and I. As I have since listened to and read the lyrics, the song is the story of our year. We are on the top of a major mountain and we can look back at really how far we have come and see God’s footprints along the way. Yet as we look forward, we do not necessarily see a lush valley below us. When you climb to the top of Half Dome, you accomplish something great, but looking East you see that you are just at the beginning of the journey, for there is plenty of rugged terrain ahead, many more peaks to climb. I won’t go into a commentary on this entire song, but believe me when I say, every line speaks to our story and God’s goodness in our lives, for never once did we ever walk alone. God is faithful in all things.  

Matt Redman - NeverOnce, New Album - 10,000 reasons, Year: 2011 (Click here to hear the song)

Standing on this mountaintop

Looking just how far we've come

Knowing that for every step 
You were with us 

Kneeling on this battle ground 
Seeing just how much You've done 
Knowing every victory 
Is Your power in us 

Scars and struggles on the way 
But with joy our hearts can say 
Yes, our hearts can say 

Never once did we ever walk alone 
Never once did You leave us on our own 
You are faithful, God, You are faithful 

Never once did we ever walk alone 
Never once did You leave us on our own 
You are faithful, God, You are faithful 
You are faithful, God, You are faithful 

Scars and struggles on the way 
But with joy our hearts can say 
Never once did we ever walk alone 
Carried by Your constant grace 
Held within Your perfect peace 
Never once, no, we never walk alone 

Never once did we ever walk alone 
Never once did You leave us on our own 
You are faithful, God, You are faithful 

Every step we are breathing in Your grace 
Evermore we'll be breathing out Your praise 
You are faithful, God, You are faithful 
You are faithful, God, You are faithful

So as we do life outside of the appointments, the therapy, the hours of eye patching each day, we are seeking to give Levi a normal life and get him involved in normal activities. It is easy to allow his disabilities to define him, because as his parent we want to defend our child from peoples judgments. We want to share his story so they understand. But the reality is when someone meets Levi he engages them and they are taken by his personality, his soft heart and gentle spirit. They see beyond the physical and see him for who he is. This is an area that both Kara and I want to grow in. We need to allow Levi not to be defined by his disabilities, and not hold him back from the being the amazing little boy God created him to be.

Do you remember back in 2003 when President Bush landed on the aircraft carrier with the sign "Mission Accomplished"? At the time the USA felt the job was done, only to realize that things had just begun. Not knowing that the battle they had stepped into was bigger than they thought. I would not say that when we left the hospital one year ago that we felt that the job was done, but looking back on what this year has brought I can say that the battle has been bigger than we thought.

-Dan

                                                           

Eight months ago . . .

Eight months ago: We surrendered our baby into the loving hands of his surgical team and trusted that God would take care of him as He controls those things beyond man's capabilities. Time and time again Levi has amazed us and we are so thankful for his recovery. Still so thankful for all the support around us and so hopeful for continued recovery.

We have so many good things to report since our last update. First and foremost we have "Baby Will" as Levi calls him. Our sweet, huge baby Will Joseph. He's been a perfect addition to our family. Kade hugs him all day long and shows him all his favorite things and is actually quite helpful in a lot of ways. Levi is very proud to have "brober" next to him in the van and seems to generally like Will. Will was a whopping 10 pounds and 5 ounces, yes a biggie. It explains why this pregnancy was so hard, I was carrying a super human inside of me. His labor was by far the easiest of all three and almost seemed easy in comparison.

When Will was just 4 days old we met with a Vision Consultant that we got connected with through one of the support programs we are a part of. She was able to direct us to a new Opthmologist that she believed would be a better fit for Levi. I called and got a next day appointment due to a cancellation (the next after that was over 6 weeks out). I'll have to admit that I wasn't thrilled about taking a 5 day old down to La Jolla, but I wasn't about to turn it down. The doctor gave us something that is invaluable when it comes to healing: Hope. He helped us understand more about Levi's potential and emphasized that he is amazed at how well he is doing considering what he had been through. He's not going to rush into any procedures to improve upon Levi's situation, since he wants to give Levi's body a chance to continue the healing process on his own, but down the road we may have options to help things along even more. Once particularly good thing we learned was that because of Levi's young age, there IS hope for his optic nerves to heal, even if they had been damaged by the tumors which encroached on them. Wow, this was hugely good news, especially since we hadn't even considered it a possibility. He also brought the patch therapy from 4 hours a day down to 1-2 hours a day. This pretty much made my year. If you read the last post, you might recall how the patching affected our lives. Awesome. Super awesome.

This week Levi got fitted for a new orthotic device similar to the brace he wore when he got out of the hospital, only smaller. The physical therapist is hoping it will help adjust his foot alignment, since his left foot still turns inward. I can't say I am too excited about it, but I am certainly willing to try anything to help Levi. Thankfully, Levi is excited about it since he gave a fit or two about not getting to wear his new "boot" home. He didn't quite grasp the fact that it took 2-3 weeks to fabricate his new one. Let's hope his excitement sticks around and this device helps him!

I am particularly looking forward to our next Endocrine appointment, as I hope to learn more about the growth hormone that Levi will begin to take and when exactly she anticipates that to start. I think they will wait until August until they start, but wonder if they'd consider starting earlier since Levi has had clean MRI's. I know that the introduction of growth hormone will bring on new challenges along with it, but I am eager to see my little man grow. I realized the other day that I don't always recognize that Levi is "growing" because, well . . . he isn't. But he is maturing into a 3 year old. He is becoming more capable and I have to remember that just because his body isn't changing, his mind is.

We had a week or so that Levi woke up with a completely soaked diaper (and blanket, and bed) every morning,

rather than the normal once or twice that we've become accustomed to. It was clearly time for a medication adjustment. Obviously, I am glad that he is more comfortable and not being woken by his thirst/diaper, but I am also quite happy that I don't have to completely wash and remake his bed everyday. All of his other meds seem to be doing their job and Levi has learned to take his pills whole, rather than crushed and in a bit of water. It's the little things that help, like not having to crush and mix his pills twice a day. As Levi says, Wee-ha.

Levi continues to LOVE his physical and occupational therapy, which we go to Monday's and Thursday's. A major focus is working to strengthen the left side. He's got great range of motion, just still a lot of muscle weakness. He's not running yet, but he moves pretty quick with his adapted run. It's the sweetest thing, yet kinda sad,when he walks really fast and is really proud of himself, he exclaims, "look ma, I running". Keep up the good work my boy!

We have also started the process to get him going in pre-school next year. One thing you find out when you have a special needs child is the amazing support system our school system and state have set up. Wow, what an invaluable support. So far we've completed half the evaluations and early May we will meet with the school district to see what their recommendations are for him. I am VERY curious to see what they will recommend for him.

As much progress as we have made and are still making and there are moments that Levi seems normal . . .there are also moments that absolutely break my heart as his mom. A few days ago my heart broke for Levi as we played at the park. It was a "normal" day, we woke up and went about all the daily things and got out to enjoy a beautiful day with some friends at the park. Once at the park we all got out of the van, each excited to see our friends and enjoy some time together. There was nothing unusual about the day, kids playing everywhere and lots of fun being had. Levi has become much more independent at parks and I am thankful that he

ventures off on his own now. Just a few months ago he would cling to me, not confident enough to go and play on his own. He continued to play for a while and I continued to keep an eye on him, while trying to get my chat on. I glanced over and saw him halfway up a landscaped hill (the kind kids are not suppose to play on, but they can't seem to resist) I saw him struggling and falling and . . . . alone. Alone because all the other kids already ran up the hill and left him behind. Alone and his knees dirty from his many attempts to keep up with his friends. I ran over to him to help him out of his predicament and looked at his sweet, confused little face and my heart broke for him. Oblivious to the challenges that are to come as he grows aware of the differences in his body. I escorted him over to the play structure and he sweetly initiated making pies for me out of the mulch, but the fact that he was the only kid left to play with his mom didn't escape me. I almost cried for him right there (well I did a little bit behind the shelter of my sunglasses), but I held it in til now. I know every child will struggle as they grow, but it hurts to see your child struggle in this way.

May 12th Levi will turn 3, and we are planning to make it a special celebration, as he has gone through so much this past year. We have a lot to celebrate!

Blog post: check

Wow, it's amazing how long

"update blog" resided on my "To Do"

list, yet evaded me for weeks and weeks.

It's been nearly two months since my last post, it's amazing how the time flies by yet drags along at the same time. During all the weeks of procrastination on writing this post, I also delayed this entry because I felt I was coming up pretty blank. Insightful thoughts to share: none. Interesting/exciting updates on Levi's health: nope. I was having a hard time putting this phase of our lives into words. I think I finally concluded that I still don't have words, but accept that this is okay for now. I accept that we are just surviving and that's okay. Yes, there are wonderful moments and glimmers of hope mixed in there, but in general, I (we) are just getting by. Some days I dread the future and some days I can hardly wait, but in all of it I am trying just to keep on pressing on, in hopes that one day it will be a little easier . . . . and my body won't hurt so badly. . . and I won't wish for a one story house (bring Levi up and down the stairs is hard on this hugely pregnant body).

The updates on Levi's progress are as such:

• Tumor: On Valentines Day we met with the neurosurgeon and we received wonderful news, Levi is still tumor free! I always go into the appointments expecting to hear this news, but it still is such a relief to hear the words come out of the doc mouth. We also had a chance to see the actual scans of the before and after of his brain. Holy tumor. As you look at Levi's profile, the tumor took up about a quarter of his brain space, it was pretty ugly. Again it reminds us of how thankful we can be of his outcome. And we don't have to get another MRI for 6 months!
• Vision: Patching. Oh how I loathe thee. By far the hardest part of Levi's rehabilitation. During the past few weeks I had decided that if I was given the choice of winning the Lotto or not having to patch Levi anymore, I would definitely choose not patching.
• Motor Skills: We continue our routine of PT/OT twice a week and Levi continues to make very small bits of progress. We call it "Gym Class" and regularly requests to go and tells me how much fun he had there.
• General: After we got through the short hospitalization after he got the flue, things have been quite stable. We had a follow up with his endocrinologist and we talked briefly about how he is not growing (expected) and will look at staring growth hormone this summer. I guess generally when cancer is involved they don't like to start it sooner than a year after resection in case it could cause any tumor regrowth.

We keep very busy with the appointments as well as the additional meetings that we have been doing to get Levi set up for all the programs he will be eligible for when he turns 3. So until I have this baby, we'll be pressing to get a lot of these things wrapped up.

I hope that my next post can share our new little one with all of you. I was having a considerable amount of anxiety as related to birthing this baby and his well being. As I prayed, I could tell that something was stopping me from really letting go of worrying about it. Until last night, when I gathered with four of my most treasured friends and they prayed with me I didn't realize why I wasn't able to release this fear. Control. If you've ever waited on a baby to come, you know the feeling of having no control of the timing and the anticipation that comes with all the unknowns. I knew I wasn't in control and as frustrating as that was I accepted that. The thing that I was forgetting until last night and that provided the key to the peace I was missing: I am not in control but God is.

This I can grab onto, this I needed. A reminder of the big God we serve and a reminder that the same God who carried us through the last 6 months will s

urely carry us through the next.

Photos: (top) Levi's typical morning routine: Cherrios eaten with his fingers since he shys away from the spoon when patching, milk and apple juice. (middle left) Levi hiding his arm from me at the lab because I told him he was going to have to get a little pinch. He's a smart little guy. (middle right) Prepping for his MRI, he does so well with all the stuff we put him through. (bottom) Kade and Levi enjoying a local lagoon.

Ah, now I can finally check this off my list. Now to get the last item of the week completed: wash car.

Love to you all,

Kara