19 Weeks Post-Chemo

23 Aug

    Hello from Astronaut Landon!

We had more good news this week – Landon’s EEG was normal!! Back in January, his EEG showed epileptic activity, and the neurologist felt it was likely a side effect from his chemo, so our hope was now that we were three months out from chemo, there would be no further neurological side effects. And this time, his EEG came back normal!  We are now weaning him off of his anti-seizure meds, and in about three weeks he will be done with that med, and will just be taking an antibiotic on the weekends!  He is so excited!

School is still on hold for now until we have the okay from his doctors, which we are hoping will come in October.

He is continuing to feel well, and is full of energy! It is such a relief for life to be more “normal.”

Not Back to School

22 Aug

I have mixed emotions today. What should be Landon’s first day of kindergarten.

I feel as though cancer has taken yet one more thing from us.

Today should be an exciting day for Landon, a new start, new friends, new experiences. A tough day for me, lots of hugs, lots of tears, so much pride for my big boy.

And yet instead I find myself feeling bitter, sad, angry.  That with everything else cancer has taken, we also lose this moment as well.

And not to sit here whining and complaining when we have So. Much. to be thankful for, but I am still feeling the ache of a loss today.

I want to be dressing my boy up, loading up his backpack, taking his yearly photo, dropping him off at school, driving home crying mommy tears over my baby growing up.

Kindergarten! This year! So big!

But, no classroom time yet for Landon. His immune system is still too compromised, his doctors say to keep him on isolation, no going in public. No school.

So instead of driving off to school today we’ll sit at home, playing Legos, hearing the school buses drive past outside, seeing all the photos on Facebook of everyone else’s first days, and plan for a couple months of pre-school worksheets to prep and plan for kindergarten once he is ready.

We hope he will get to attend school this year, and if not, then likely by next year. But, we never know what may happen.

Our prayer, of course, that we will have years and years of first days ahead of us, and this will just be a minor loss in the grand picture.

Colton’s Birthday Plans

18 Aug

 We are getting ready to celebrate Colton’s birthday again on the 28th.  So hard to believe that he would have been 3!  Doesn’t seem possible that so much time has passed without him.

In the past year, as I have thought about the years to come without him, there are so many special occasions, memories, milestones, events, so many things that we will never get to experience with him, and so I decided that every year on his birthday, I want to do something that he would likely have wanted to do at that age.  I also want to make a difference in his memory, even if it’s small, related to that special event.

With that in mind, this year we are going to spend his birthday at our local zoo.  I feel like at the age of three, Colton would have loved going to the zoo and seeing all of the animals, so we will go and celebrate this special day doing something that he would have enjoyed.

And in his memory this year, we have adopted an elephant at our local zoo.  Since elephants are so special to us in memory of Colton, this was an easy one to decide on!  We received the adoption certificate this past week, along with a stuffed elephant that we will add to our collection of elephants.  The boys are excited to go to the zoo in a couple weeks and get to see the elephant we adopted, as well as spend some time with friends and family.

We will be back the week of the 28th to share some photos from our trip to the zoo for Colton’s birthday, as well as continuing the birthday traditions we started for his birthday like taking a family photo in front of his tree, sending him a love balloon, and making cupcakes to celebrate his special day.

And if you would like to take part in Colton’s birthday this year, join us by adopting an animal or take a visit to your local zoo on the 28th!

Little Logan – 6 Months

16 Aug

_MG_4548

month to month copy

Oh my goodness! Somehow this little guy is 6 months old!!

18 lbs, 27 inches (and it’s worth pointing out that Logan is now the same height and a pound heavier than Landon was at a year old!)

Clothes – 6 month, 6-9, 6-12, and 12 month.

Diapers – size large in cloth, 3 in disposable.

Nicknames – squirt, little dude, munchkin, RolyPoly

Favorite Toys – toy keys, fabric rattle kitties from Ikea, exersaucer (fondly called The Monstrosity), and anything he can chew on.

Favorite Moments

  • He is all smiles for Landon, always looking for Landon, watching Landon, wanting to play with Landon.   He especially loves driving in the car when Landon is with us. 
  • He now lifts up his arms when he wants to be picked up.  Which is just so hard to say no to! 
  • He likes to “touch” faces, although not so much touch, as grab your nose or pull out your beard hair. He especially loves glasses.
  • Ever since discovering his toes, he does “toe checks.” While visiting the coast, where it was much cooler, we had socks on him most of the time, and every time we would take them off, Logan would do a toe check, just to make sure they were still there!

Logan is growing up! Definitely no longer an infant! He is all baby now!  He is rolling side to side, front to back, and back to front. He will also push up on his arms when on his belly and is starting to move his legs. May be crawling soon! He isn’t quite sitting on his own yet, but I feel that will be coming soon also. He is showing more and more interest in toys, and books, and is curious about everything.  He loves playing in The Monstrosity or even just on the floor with small toys and rattles.   He started solids this last month. Mostly just very milky rice cereal, but he loves it! We will be trying some veggies and fruit soon!  Logan has also made a new friend in our kitty, Nemo. Nemo loves Logan, and whenever Logan is on the floor playing, Nemo will come over and lay down next to him.  We’re not really sure why Nemo loves Logan so much – Logan mostly drools on him and pulls on his hair, ears, or whiskers, but Nemo doesn’t seem to mind.    Logan also loves riding around in the baby carrier. Especially when he gets to smile and laugh at the baby in the mirror or on mommy’s phone. He is doing lots of “talking.”  One of his favorite things is when we’re in the car, he goes “ahhhh” over all the bumps and likes how his voice goes up and down. It’s especially fun when Landon does it also. Not quite as much fun for mommy.

He is just too cute and we are trying to enjoy all his sweet baby-ness before he is all grown up!    

18 weeks Post-Chemo

15 Aug

  In case you missed my post last week, or couldn’t understand the radiologist’s review of the scan, Landon’s MRI was clear! Such a relief! 

We continue to pray that his scans will remain clear.  September 8th will be one year from his diagnosis and with Landon’s type of cancer, if it is going to reoccur, it will most likely happen in the next year. It could happen at any time (although if he reaches age 11 with no reoccurrence most doctors would consider him healed), but most cases of reoccurrence happen within the first couple years. Which means, as he has MRIs every three months, the next four scans will be very important, and very nerve-wracking. And I think as we have more and more clear scans, it will be that much easier to assume they will stay clear, which is not necessarily the case. 

We were very proud of Landon with this last scan. Usually he gets very nervous beforehand and needs “happy” medicine to calm him down when they take him back to the MRI room, but this past week, he told Chris he was okay and would go back by himself. He went back to the room with the nurses,saw the MRI machine for the first time that he remembers, laid down and they put the mask over his face to put him to sleep, and he stayed calm the whole time.  And while I am so proud of him for being so brave and grown up, it also makes me sad that all of this is so commonplace now that what used to scare him, and would make most adults nervous, is now no big deal. Just part of life.

We are also trying to figure out plans for school for this next year. Landon is ready to start kindergarten, but since his immune system has not fully recovered, the doctors have not cleared him to be out in public, including school.  So, we are most likely looking at some sort of home-schooling for some, if not all, of this next year. We hate for him to miss the time and socialization with his classmates, but his health has to be the priority right now. We are hoping to have more information this coming week. 

All in all, Landon is doing great! Feeling good, continuing to maintain his weight and eating well. 

Things that make me happy

10 Aug

“Stable postoperative changes status posterior fossa tumor resection with no evidence of recurrent or metastatic disease” 

Translation: Landon’s MRI was clear!!! 

Woo-hoo!! Thank you God!!

17 Weeks Post-Chemo

8 Aug

 Since we always made Landon wear a shirt to cover his Broviac and try to act as a barrier between water spills or sliding on his chest, now that the Broviac is gone, he pretty much doesn’t want to wear a shirt. Ever. 

Big news this week – Landon’s next MRI is on Wednesday, the 10th. We should have results that same day. This time they will just be scanning his brain (they alternate between brain and spine, and just brain). No lumbar puncture planned this time. Since his lumbar punctures have always been clear, they don’t feel it is necessary to do them with every scan.  We are praying his scans are clear. So much worry and anxiety and hope and life change hinging on one test. 

He also had an EEG last week. We haven’t heard results yet. Hoping it was normal and we can begin the process of weaning him off the anti-seizure meds. 

Will be back later this week with news from the MRI. Hoping to be sharing good news! 

Fun With Logan

2 Aug

Discovered his toes    And practicing rolling    This one is already enthralled by any screen – tv, computer, iPad, our phones.   Visiting and making new friends     I want all the tri-tip!   And daddy’s soda!  Hanging out with Nana and Papa    First Solids! (Sort of.  Very milky rice cereal)   You would tell me if there was something on my face, right? I want your phone!  Kitty Love    Swimming!         “Riding” his new quad toy   Landon helping with the “wind” effect  “Landon is the funnest brother ever!”General Cuteness            

Monthly Candle Lighting

28 Jul

  July 28, 2016 

35 months since we said goodbye to Colton.

Every month on the 28th we light a candle to remember our little boy and another month without him. How long will we do this? Don’t know. As long as we feel we need to.

You can see all of our previous month’s photos here.

Fun With Landon

27 Jul

Sailing with Daddy, Papa, and cousin Alex        “Riding” Uncle Nate’s motorcyclePlaying Legos on his super cool new table! Breaking open geodes with Daddy on Father’s Day  Trip to the Beach with Nana and Papa (and Logan’s first trip to the beach)_MG_4470_MG_4443_MG_4428“It’s okay – he’s a nice alligator!”  And yes, he is sound asleep in this picture! Fun trip visiting old friends who have moved away         Getting ready for surgery    And all gone! Follow up trip to run labs and check his immunity levels, “borrowing” Chris’s hat.  So Chris got to “borrow” Landon’s sweatshirt.  (Hat hair) Pool time!       Throwing rocks at the beach     Playing at the park