Good News & Bad News

Good evening!! I am running on 2 hours of sleep in the last 24 hours, so I hope this all makes sense :) 

Yesterday morning, Dylan woke up limping on his foot.  I thought it was strange, but figured he would be ok.  When he woke up from nap, he was still limping and that is when I started to pay attention a little more.  I also noticed that Dylan lost his grip a few times that night on his right side.  My sister Mandy discussed the symptoms with the docs in her ER and they said that we should go in.  So off we went.....to my favorite place in the whole world! After getting a clear CT, the neurologist wanted to keep us overnight to get an EEG and an MRI.  The EEG showed that Dylan had a lot of abnormal activity on both sides of his brain also indicating seizure activity.  We knew about the seizure activity, but we did not know exactly what was causing it....until we got the MRI results.    

So there is good news and bad news.  The good news is that there isn't any new damage to his brain.  The bad news is that there is old damage in his brain caused either during birth or from treatments, most likely treatments. That scar tissue is what is causing the irregularities in his brain that are causing seizures. There is no reversing the damage that has been done.  The only thing we can do is try to prevent the seizures from occurring.   We started him on his med and that should hopefully keep the seizures at bay. His leg injury was also most likely an old nerve injury that was made worse by a seizure. The doc wants him to do physical therapy and maybe wear a brace to help with the problem but it will most likely never heal all the way.  So all of this is not really new information, but it validates what we knew all along. Now his MRI validates it. It also takes away any hope that he will get better.... which is hard to deal with. We know that God is sovereign over every detail and He has made Dylan in His image and likeness.  Dylan is exactly how He wants him to be. We are so thankful there are no tumors or life threatening issues.... Just a little bump in the process.  Tomorrow we starts a new adventure with seizure medicine.  The meds can have side effects such as moodiness, irritability, aggressive behavior, and sleepiness.  We will go in every 2-3 months to test his blood and see if his dose needs to be changed.  We are praising God for protecting Dylan from other cancers and tumors.  Please pray for us as this is a lot of news to take in....to process.  On one hand we are thankful and relieved, and on the other hand, we are disheartened that Dylan's brain is damaged.  We are unsure of what the future holds for Dylan, but we know that the Lord has big plans for him.  We are asking for His guidance on how to help Dylan be the best he can be while allowing him to be himself.  He is such a huge blessing to us and we have some much to be thankful for.  
Thank you for continuing this journey with us!! 

One more week!

Hi guys!! This past week has flown by! We have had many visitors and have really been soaking up our last days here in paradise.  We are dropping off Mema at the airport in the morning and picking up daddy! We are so thankful daddy can join us for our remaining days here.  We plan on seeing the fireworks on the beach over the 4th of July weekend and then pack up and head home on the 6th.  I really have mixed feelings about going home.  On one hand, I am really excited to be home and get back to normal life....but life is also starting to feel normal here too.  We are definitely NOT looking forward to going to 115 degree weather...it is going to be hard to get used to that after living in the gorgeous weather here.  We really don't want to leave our new friends from the clinic either.  They have been our constant encouragers every day and have cheered us on with Dylan's growth and change....we will surely miss them all! We are planning on coming back every 2-3 months to get a follow up EEG to check on Dylan's progress. 

This week we had a little scare.  More like I freaked out.  When we were home a couple of weeks ago, Dylan had fallen and hit his face on a stool.  Well that bruise is still not healed and actually looks almost the same as when he got it.  It has not gone through the normal bruise healing stages.  I had not really noticed it or paid any attention to it, but when my mom saw him, she thought it was strange.  We showed a pediatrician and they said it was not normal either.  NOW ENTER MOMMY FREAK OUT MODE.  Sometimes being a parent is the most stressful thing ever...and being a parent of a cancer child is enough to give you a heart attack at any sight of anything abnormal.  I called Dylan's oncologist and explained the situation to him.  He did not seem to freak out which made me feel a little better...but the only thing that would put my mind completely at rest would be a blood test.  I asked Dr. G for an order for a CBC....30 minutes later we were in the lab getting his blood drawn.  We got a call this morning that his blood results came back 100% perfect! PRAISE GOD!! It's amazing how one second I can be getting frustrated with Dylan for being a nut ball and not listening and the next, I am praying with all my heart that nothing is wrong with him.  I am thankful that God gave me that little reality check....it made me step back and look at life and what it would be like without Dylan.  I cannot begin to describe the horrific thoughts that went through my head.  I take him for granted. I take his health for granted.  I take everything for granted.  We are not guaranteed any amount of time here on earth, and we really need to make the most of every moment.  I hugged my boys a little tighter today, I spent extra time admiring my amazing mother and the time I get to spend with her, and I thanked the Lord for all of the incredible blessings he has given me.  

Well, no more mushy gushy stuff....here are some photos from our day at the beach on Saturday! ENJOY! 

  

Busy Busy Busy

Hi guys! Things have been crazy around here.  We were able to make it home for few days a couple of weeks ago and now we are heading back tomorrow for a few days. Dylan has a routine eye pressure check on Wednesday morning.  He still has to go under anesthesia because he will not let the doctor anywhere near his eyes with the probe.  I don't blame him, it would be hard for me to do too!! While he is under, the doc will also check his eyesight to see if we have to change his prescription.  He has been in the same glasses for 18 months so it is likely that he will need new ones.  During the last eye pressure check, the doctor notice a cataract forming in one of his eyes.  Hopefully it has not progressed.  The doc said that if it continues to get worse, they would most likely need to do surgery to fix it.  He said that it may work out in Dylan's favor as he gets older because he could get new lenses implanted into his eyes and eliminate the need for glasses.  Hopefully all of this is far down the road!

Wednesday evening we are headed to the capital building to film a video about cord blood donation.  There is a group trying to get information about cord blood on the ballot and they want to use Dylan's story to help raise awareness.  We are so thankful that the Lord has been able to use Dylan to reach so many people and to help others.

We are also headed home for a special event! Dylan has been chosen as the Leukemia & Lymphoma Society's Boy of the Year to help raise funds by the participants from the Man & Woman of the Year Competition.  The final event is on Friday and we are excited to celebrate with everyone! Someone donated white tuxes for the boys! I cannot wait to see how cute they look in them! They will be sporting white tuxes with orange bow ties for Leukemia....I am pretty sure they will steal the show!! I am really hoping Dylan cooperates and wears his snazzy outfit...at least for a few minutes so I can get some photos.  And, they are white....not sure how long they will STAY white!!

So what's been going on here in San Diego?  We MOVED! We moved on June 1st to the cutest little bungalow guest house located in La Jolla.  This house is a gift from God! It is a one bedroom, one bath little house located behind the main house.  We are 6 blocks from the beach and about 40 minutes from clinic.  We LOVE it here.  There is a back patio where the boys can ride their bikes around and play and explore, and there is a nice big living area for us to spread out that has gorgeous natural light.  This place makes me happy.  The boys can be loud and rambunctious and we are not bothering neighbors to either side of us and below us.  WE ARE BLESSED! And on top of it all, it cost a lot less than all of the other places that we could find for June.

The Plan:  Dylan is continuing to progress with his treatments.  It is truly amazing to see his brain soaking up more information and to see the little changes along the way.  But we need to get back home.  We need some structure and we need to be together as a family again.  We have made a decision to move back home the weekend of July 4th! YAY!!!! The doctors are confident that Dylan will not regress and will progress with speech therapy and school.  We are so excited to see what this next year holds for Dylan's growth.  We are planning on coming back every 3 months to get follow up EEGs to track Dylan's progress.  The clinic has graciously extended their offer for treatment and we are welcome to come back for a "refresher" any time.  We could not be any more thankful for everything they have done.  They all feel like family now, and we will definitely be sad to leave them.

Dylan is talking more and more every day.  He is still pretty feisty and fights me on a lot of issues, but that is to be expected with his growth and I am ok with that.  His drawings are continuing to change and new ones are being drawn every day.  He REALLY loves singing now.  Last month, he only liked one or two songs as his favorites, but now he LOVES THEM ALL.  These boys are singing everywhere we go! They especially love singing "Jesus Loves Me"...and very loudly...in public.  It's funny to see people's reactions.  They are little evangelists! His other new favorite is "Monkey in the Tree"...or that is what he calls it.  He gets soooooo into it and laughs hysterically and loves the end when the crocodile snaps the monkey out of the tree.  If you see him, ask him to sing it. He will gladly oblige.  That and "The Wheels on the Bus", complete with 5 verses.  I love these kiddos!! There is definitely never a dull moment with them around.

Thank you for following along and for praying for our family! We love you all!!!

A few weeks ago we drove up to Santa Monica with my friend Nicole....here are a few of our photos from that weekend!!  ENJOY!

4th EEG Results

Hi Guys!! Dylan had an EEG last week and it was the smoothest one yet.  He was completely calm and sat still well enough for them to get some great readings.  We were able to go over the EEG results yesterday.  Dylan’s left lobe in his brain is still producing a lot of epileptic activity.  His most recent seizure was this past Saturday. The new plan is to raise the frequency that they are “blasting” at that specific part of his brain in hopes of knocking it out.  They do not feel that he needs to get on medicine just yet.  The good news is that despite the seizure activity, Dylan’s brain is still responding to well to the treatment.  It is slow progress, but it is progress.  All we need to do now is knock out the neurons that are pulling down the others.  So, what does this mean for our timeline? We still have no idea! It’s so hard to tell what Dylan’s brain is going to do, but we are guessing that we may be here into the summer.  We have the condo we are staying in currently until the end of May.  Then, in June, we secured an adorable little guesthouse in La Jolla….for a great price! The owners are willing to do month to month for us and it is the most affordable place we have found yet.  God is good….and ALWAYS provides (even when I forget that for an hour and go through a minor freak out session…I am thankful for his GRACE!)

So what is going on with Dylan? He is still his goofy and quirky self, but different.  He is more aware of his surroundings and more involved in all the decision making.  He used to be a very go with the flow kind of kiddo, mostly because his brain was in a fog and he did not realize what was going on….well, now he is awake! He has an opinion about everything.  EVERYTHING! It is really quite hilarious.  He has become very vocal and it makes us so happy! His vocabulary is increasing and he is trying to get his point across more and more each day.  He is still having trouble pronouncing his words, but the amount of words are increasing.  Insert HAPPY DANCE here!! He has come so far in the past few weeks and it is exciting to see him grow and learn.  Erik’s family was here this past weekend and they noticed a huge change in him right away.  Sometimes I think we get used to the changes and get discouraged that he is not progressing, but he is.  And his brain is trying to catch up.  It is soooooo exciting!!!

 One of my favorite milestones he has hit is singing.  He has never sung anything or even cared about music.  He is now dancing AND singing along to his favorite shows.  He asks to sing in the car….meaning he wants their kid CD to play.  We have also been singing more every night and each of the boys really enjoy this.  Dylan’s favorite song is Row, Row, Row Your Boat.  This was introduced by Jackie a month ago and he really enjoys it! It is so cute to listen to him try to sing it.  And there is a secret second verse that is his favorite part.  Everyone needs to know this verse.  Here it goes….”Row, row, row your boat, gently down the stream, If you see an alligator, make sure that you scream!” And then you say AHHHHHH!!! That is his favorite part and he cracks up every time.  We probably sing this song 10 times a day and it never gets old.  Andrew’s favorites include Lord’s Army, Jesus Loves Me, Deep and Wide, and You are My Sunshine.  It is such an amazing sound to hear the kiddos singing….I LOVE IT!! 

We are heading home this weekend because I am shooting a wedding on Friday and we have to bring Daddy back home.  We will be returning on Monday without Daddy.  Please pray for our family.  It is very hard on everyone to be separated, but Daddy needs to work.  It will be a big load on me being here by myself with the boys, but I know that the Lord provide me with the strength to do it and will keep us safe. Thank you for the continued love and support!! I will update again when we have more information to share.  Have a great night!! 

I Choose JOY

One year ago today was the day we met our baby girl and had to say goodbye to her.  It was the hardest thing I have ever had to do…

She was perfect.  Although was was only 17 weeks old…she was perfectly formed.  I spent hours staring at her little body.  She fit in the palm of my hand.  So tiny.  I took my time to stare and her and I was in awe of the miracle that the Lord had created inside of me.  

We do not know why the Lord chose to take Joy home, but we know that we will see her again some day.  I often get asked if we are having any more children…and I really do not know the answer.  At this time, we are actively trying NOT to get pregnant…but as we all know, God is in control.  I don’t know if it is the right time for us or if it ever will be.   I struggle with having the desire for another child….I just want her.  I want Joy.  But I know that cannot happen.  

It hurts.  The pain is still raw.  I never really understood how devastating miscarriage was, but now I do.  It’s a pain that cannot be described.  To know that you have a life growing inside of you and getting excited to meet that little person, and loving them from the moment you find out about them….and then they are just gone.  I’ve always wanted a girl.  Badly.  I love my boys so much, but there’s just something about the thought of having a little girl that makes my heart ache for one.  I want Joy.  Every time I see a little blonde girl, I wonder what Joy would have looked like.  I picture the most beautiful little baby with bright blue eyes and little blonde ringlet curls.  Seeing little girls makes my heart ache for her….when will that pain go away? She would be 7 months old today….

As I think about the days leading up to the birth, I have to be thankful to the Lord for how He worked everything out.  I did not talk too much about this at the time, but I think it is important to acknowledge how the Lord provides and takes care of every detail.  He took such good care of me during a horribly heartbreaking time.  And honestly, I do not want to forget the details, so I want to record that day while it is still fresh in my mind.

We were at my 17 week ultrasound.  We were supposed to find out the sex of the baby.  We were so excited.  As the doc was doing the ultrasound, he paused and focused on her perfect little hand….her beautiful little hand….and that is when I knew.  She was not moving…just showing us her perfectly formed little hand.  It was unreal.  I did not want it to be true and prayed incessantly that there was some mistake or that the Lord would bring her heartbeat back as we were on our way to another facility to get a more detailed ultrasound.  But she was gone.  

Next came the really hard part.  I had a baby inside of me that was no longer alive and she needed to be born.  The doc said that he could do a DNC but I would not be able to see her and I knew what that meant….I did not want to do that to her.  My other option was to give birth to her.  The doc would induce me and my body would go into labor.  It could take many hours….HOURS of sitting there going through the motions but not getting to take home my baby.  The thought of going through that frightened me to the core.  I have never felt so helpless and afraid in my life.  I did not want to go through this and I had no choice.  So we prayed.  We prayed that my body would go into labor on it’s own and I would not be stuck in the hospital inducing labor.  That is exactly what the Lord gave us.  I started labor in the middle of the night on Easter last year…and we barely got to the hospital in time.  There was no physical pain, and there were no complications.   I remember the nurse asking me if I knew the sex of the baby….at that time we still did not know.  I told her to just not tell me she was a girl….and she was….for some reason that made everything even harder.  

We got to hold our baby girl.  My baby girl.  The baby girl I had dreamed about.  I counted her little fingers and toes.  I looked at every detail that God had created….she was beautiful. Perfect.  We had talked about girl names but she needed an extra special name.  Joy….Rejoicing.  

 Everyone at the hospital was so wonderful to us and very kind regarding our delicate situation.  I think the hardest part was leaving the hospital without our baby girl.  I watched as other mommies were wheeled out with their precious little babies and we left with empty arms.  I have never cried so much in my life. 

After everything….I am so very thankful that the Lord blessed us with a girl.  I will never forget Joy.  I am so thankful that we did not know she was a girl before we found out about her.  I am the type of person that would have had her room decorated and her entire closet full of adorable girly clothes within days of finding out the sex.  I cannot imagine how much harder it would have been to go home to a room full of reminders….God is good and spared me from that.  He also took her home early….I am thankful for that.   I am thankful that He has healed the pain.  It is still there, but not the same way it was before.  I have comfort knowing that I will hold her again some day.  I know that she is safe in His arms.  If you know someone who has gone through a miscarriage or lost a child….hug them, and hug them often.  It is a pain like no other and no parent should have to experience it.  I am thankful that I did not come home from the hospital to an empty home….but to hugs and kisses from my crazy little boys….little ones who had no idea what was going on.  Every day is a new day and I am greeted each morning to two little faces who cannot wait to see me.  I have a husband who loves me. Friends and family who are always there for me.  I have so much to be thankful for…I will always give thanks, even when it hurts.  I choose Joy.  

Thank you to everyone who played a crucial part in our healing time.  Every card, message, hug, visit and prayer helped us through that heartbreaking time...I am so incredibly thankful for a support system pours out love and support when we need it. God is good.  All the time.     

We plan on going to the beach today and letting go of pink balloons to remember her…I want the boys to remember her too and one day they will understand….

Sweet Baby Joy….I will see you again someday soon!

 I will get to hold you and smell your sweet scent and 

smother you with hugs and kisses.  I am looking forward 

to that day!  We love you so much! 

I will leave you with the lyrics from a beautiful song from 

one of my favorite artists.  

“Olivianna” by JJ Heller 

Hearts broke... when your heart stopped beating

I don't... know if mine will ever stop bleeding

Eleven minutes to breathe you in

I felt the darkness

When I knew I couldn't hold you again

When I knew I couldn't hold you again

Olivianna, you're in the arms of God

Just a moment there is better than here

Life is... short, but it is wide

I know it's true

You've touched more souls

Than most people ever do

Olivianna, you're in the arms of God

Just a moment there is better than here

You could not stay with us

We will come to you

You could not stay with us, ooh

You're going home, Love, where you belong

Oh my baby girl, I'll see you soon

Olivianna, you're in the arms of God

Just a moment there is better than... 

Olivianna, you're in the arms of God

Just a moment there is better than here

Happy Birthday Dylan!! Can you really be 6?!!

{To my sweet baby Dylan....you will always be my baby.  For as long as I can remember, I have always wanted to be a mommy.  I waited a long time for you.  I wanted a baby as soon as daddy and I got married, but he got me Lily instead.  Then four years later, you came along.  I still remember the day that I found out I was pregnant with you...daddy and I were sooooooo excited.  You were a dream come true for me!  I know that you have been through a lot in your short little life but God has big plans for you.  You are such a strong little boy.  You are tough.  You are sweet.  You have more spunk than any other kid I have ever met.  You are you....and you are perfect.  I cannot imagine this life without your contagious laugh or your quirky little personality greeting me every morning.  Thank you for consistently teaching us and showing us how to enjoy the simple things in life and to not take this life for granted.  We love you little man! Happy 6th Birthday!! } --Love Mommy

I still cannot believe my baby is 6!! How is this even possible?  When I think over the last 6 years, I am just in awe of what the Lord has done in his little life.  

And He is not finished yet.  

Life with Dylan is a constant adventure and we are ready for whatever God has in store for our family.  Thank you for joining us on this little roller coaster we call life! Here's to another year of laughter, fun, growing, and learning! 

I wanted to do something fun for Dylan's 6 year photos.  I wanted to do it around something he loves. Well, he loves chips and salsa....and that is not really the prettiest thing to photograph....so we went for the next best thing, ICE CREAM!! So here is a little shoot we did at an adorable ice cream shop called Sloans.  ENJOY!

This last set is one of Dylan's favorite past times....watching DOOOOORS! If I could buy him an automatic door, I would! He LOVES it!!! 

Day 23....Are we really on our 5th week???

Hi guys! Happy Easter! I hope everyone had a wonderful weekend with family and friends.  We were able to go home for the weekend and it was sooooooo nice to be home! I have to give the boys a lot of credit for how flexible they have been....they have surely been more flexible than I have. Whenever we get in the car to go somewhere, they always ask where we are going.  Now when we say "home", Andrew asks, "Which home?"  Where is home anymore?? I am beginning to wonder too!! Last week we stayed at an extended stay hotel for 6 days....that was SUPER fun.  Then home for 3 nights....oh it was glorious to sleep in my own bed!! Then we drove back on Monday and stayed at a Hyatt extended stay for 3 nights.  That hotel was AWESOME!! We even got a great breakfast cooked for us every morning! If it were up to me, and we had endless amounts of money, I would stay there forever! And that brings us to today.  Where is home now?  Well, let me back up a bit.  We found out on Sunday that the condo we had previously been staying in was not going to work out anymore....so that basically brought us back to square one....and homeless! We knew God would provide, and He did just that! We received a call late Monday night from an anonymous donor wanting to help us with part of our lodging! What a huge BLESSING!! Do you know how expensive rentals are in San Diego?? PRICEY!! With the donor and donations we have received for Dylan, we will be able to pay to live here until the end of May.  After that, who knows? Actually, I do know who knows....and He has it covered!! We moved into our new place today and are excited to be staying in one place for a few weeks.  It's in the perfect area close to where we need to be and will work for what we need...God is good!

Now on to Dylan.  He had his third EEG on Monday.  He did well with it and was cooperative for the most part.  We were anxiously awaiting the results and were able to talk with the doctor today. The EEG did not show a significant improvement, at least not like the 2nd from the 1st.  It showed that the back of Dylan's brain is catching up and is starting to be on the same wavelength as the frontal lobe which is a good thing.  His neurons are still not firing off at the rate they need to be, but this can take time.  I feel like I get so impatient and I want his brain to heal overnight, but I know that is not the case.  It's a long process and could potentially be a very long process.  Waiting is hard.  But we know that we are where we need to be.  Also, there is epileptic activity in his left lobe.  It was there before, but harder to detect because his EEG was so messy.  The doc was hoping it would go away, but there it is....staring us in the face.  He has not had any seizure activity that we have seen since before we left back in March.  On Sunday he had a small occurrence that resembled more of a panic attack, but it could have been a seizure.  Basically there are neurons in his left lobe that fire off fast and then slow down significantly instead of being consistent.  These can trigger seizures and slow the rest of the neurons in the brain.  These neurons are working against everything we are trying to do with the therapy.  So what do we do? Well, we could put him on meds to help with the activity but that too would slow down the progress of the therapy.  The doctor is now targeting that area specifically with the MRT along with his frontal lobe in hope that it knocks out the "bad" neurons and gets them to fall in line with the others.  We started this extra step today.  We will know if it works by the results of next EEG which will be on the 20th.  If it does not help the epileptic activity, then we will have to probably start Dylan on meds.  The meds will significantly slow down the process of the therapy so we are really praying that these neurons get their head in the game! Will you pray with us?
Thank you so much for each and every one of your prayers! Thank you for everyone who reached out to friends and family to look for a place for us to stay and thank you for every comment on facebook or email or text of encouragement.  You guys are all such a blessing to us and we are so very thankful for you!!

I will leave you with a few photos of my monkeys....they hate photos.  They really need to get over it though :)