Tuesday, September 10, 2013

4 years ago and it seems as though it were yesterday.....


September is Childhood Cancer Awareness month.  How appropriate that our little guy celebrates yet another year of health on September 11th.
This is an excerpt from our prayfordylan.com blog on the big day.  09/11/2009
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Thank you everyone for praying today!! The whole process was very anti-climactic :) They basically brought in a syringe of cord blood (that was previously frozen) and then it was given through his broviac. The nurse pushed in 60cc's over about an hour while I held Dylan in my lap. They had him hooked up to monitors to check his vitals every 10 minutes. His blood pressure went up during the transfusion, but that was expected. There was a short time when they put him on oxygen because his stats came down a little bit, but that was due to him being frustrated and crying. There is a preservative in the blood (since it is frozen until use) and it makes the recipients breath smell like creamed-corn. So while Dylan was getting his cells, he was breathing out the creamed-corn breath!! The whole room was filled with the aroma--it was quite strange, but interesting :) So if you would like to know what his breath smelled like, then open a can of creamed-corn and take a WHIFF!! Ha!! I know that some of you are going to do it! :) He is now resting comfortably on Grandma (Erik's mom) and is trying to get some sleep. He has only eaten once today and does not seem very hungry-so his eating days may be coming to an end for a while. He will be put on TPN (total nutrition through IV) tonight, so we will not have to worry about him eating.
THE NEXT STEP:
The next step is the waiting game.......wait.....watch....and pray. The new cells will start to engraft in about 7-10 days. That is when they will be starting to reproduce and fill his marrow with new healthy cells. The final goal is to have 100%donor cells and 0% Dylan cells. This whole process will take about 3 months to be fully grafted. The side effects will be coming soon-usually within 3-5 days. His mucous membrane throughout his GI tract will be stripped, and because D does not have an immune system right now, he will not be able to replace it. That is when the sores will come. On his bottom, his throat, and his mouth--this is unavoidable after transplant--so please pray that it is minimal. IF the sores in his throat get bad, they may have to intubate him and place him on a breathing machine or ventilator. If this is necessary, he will be moved to the PICU and will be unconcious for 4-5 days. He may get a rash, fevers, and nausea. All of these things are to be expected and will all be temporary. They will usually subside within the first two weeks. During this time, Dylan will not be able to have visitors because of his non-existent immune system. This is now the time for his body to start healing itself from the inside. Please pray that the cells engraft quickly and that his body does not reject the new cells and the new cells do not reject his body. They say that children, particulary babies, are very resilient and that he should recover quickly-and that is what we are praying for!! The battle is not over yet, and in a way, we have just begun. Today is day 0-and tomorrow will be day 1 post transplant. We cannot wait to get into the higher number of days!! Thank you everyone for being diligent in praying for our precious boy!!


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Whenever I think back to all of those months in the hospital, I always get overwhelmed by God's amazing grace and mercy.  He carried us through so many sleepless nights and days on end crying on our knees.  We are so thankful for this amazing little life that has been entrusted to us! Thank you for all of you who have prayed for Dylan in the past and for your continued prayers.  We have a long road ahead of us, and we may encounter more trials, but we will do it knowing that the Lord will carry us through no matter what the circumstance.  Praise God for healing our little fighter!

Sunday, August 11, 2013

First Day of Preschool (Year 2)

 
Last Tuesday was Dylan's first day back at Preschool.  When we attended the meet the teacher night the week before, Dylan greeted his teacher with a growl.  Great Start! Tuesday went a little better.  His classroom is on the opposite end of campus than it was last year, which still confuses him.  I am sure after a few more weeks he will get the hang of it.  His teacher this year is Miss Megan.  She is super sweet and Dylan seems to be warming up quite well to her and the other aids in the class.  Dylan thrives off of routine, and that is exactly what he will be working on in school.   He will be getting occupational therapy, physical therapy, and speech therapy in school.  Unfortunately, he was denied for ALTCS, so we will not be getting any extra therapies outside of school at this point.  We are really bummed, but know that all of this is in God's hands.   It is hard not knowing the future or how to get where we feel we need to be.  God knows the details, and He will take care of it.  But it is so hard for this mommy's heart...please pray for me!!
 
Enjoy the pics of his first day!! I know I will always treasure pictures like these.  We tried to grab a few outside before we left....but it was raining...and Dylan was being....well, Dylan! He is not a fan of my camera! (Better get used to it buddy!!)
 


 
Putting him up on the ledge was the only way I could get him to hold still!

 They are best bud! ......MOST of the time
 STEP 1: Walk to class      STEP 2: Drop backpack and pick out name       STEP 3: Wash hands
 STEP 4: PLAY!


 

Thursday, August 8, 2013

Family Photos by KBH Photography

This summer while we were on vacation in California, we had some wonderful family pictures taken by Kristin with KBH Photography.  She is amazing! I have known her for years and I love her photography.  We found out that she was going to be in Cali the same time as us and we could'nt pass up the chance for beach pictures! ENJOY!












Tuesday, July 16, 2013

A visit to the Neuro Psychologist....



I think these pictures capture Dylan's personality in a nutshell.  He is one of the happiest kids I have ever met.  The simplest of things make him laugh and giggle, and that laughter is contagious.  He has a almost a magical way of making people fall in love with him.  Strangers in the grocery store, at the park, or wherever we go are all drawn to him.  He is special.  He is our miracle.....

A couple of weeks ago we went to see a Neuro Psychologist.  His oncologist believes that some of Dylan's delays are not "normal" reactions to his treatments.  Dr. G has dealt with many, many children going through treatments, but nobody has gone through exactly what Dylan did, and especially not at the age he did.  Before doing any MRI's or other tests, we were advised to see a psychologist.

I went into the appointment with Dylan knowing what they would probably tell me, but not wanting to hear it.  We know Dylan is behind....really, really behind.  We can see that he is not like his peers and emulates peers over half his age, including Andrew.  We have always been told by therapists that he was just delayed and that he would catch up.  This has not been the case.....

The psychologist spent a couple of hours interacting with Dylan and going through a series of tests and games to gage where Dylan was developmentally.  If I did not know Dylan was behind before, I definitely knew now.  I watched as he showed him pictures and asked him questions and I watched Dylan like I have never watched before.  I saw his little mind racing and trying to figure things out, and other times I saw the blank stare on his face as though the Doctor was speaking a foreign language. 

After the doctor finished his tests, he concluded that Dylan is functioning at a 2 year old level and below in some areas.  He believes that the chemo and radiation had a far greater effect on Dylan's brain than what was expected or "normal".  He has officially diagnosed Dylan with a Major Neurocognitive Disorder Due to Another Medical Condition, without behavioral disturbance.  The white matter in his brain has been disrupted causing primary deficits in attention, persistence, and short-term memory/memory encoding. 

What does this mean to us?  This means that nobody can tell us what Dylan will or will not do.  Only time will tell. He is currently progressing, but at a very slow rate.  But any type of progression is good.  This means that Dylan may or may not catch up and be "normal", and more likely that he will always be behind developmentally, and posssibly severely delayed.

Aside from any and all diagnoses....we are thankful that Dylan is here.  We have been blessed beyond measure from the joy that this child has brought us.  The joy and laughter overshadow any and all of the heartache and pain that we have gone through.  He is a blessing.  He is perfect in God's eyes, and he is exactly how God wants him. 

As parents we always want whats best for our children.  We want them to grow up, learn to ride a bike, go to college, get married someday and have our grandchildren.  We have to realize that these things may never happen for Dylan and that is very hard, however trivial that may seem.  Please pray for us as we embark on our journey with a new perspective.  We are learning new ways to parent him and to help him learn.  His brain functions a little differently than most.  Everything right now is a little overwhelming.  We know that we cannot do this alone and that the Lord will be our strength in times of weakness.  We know that the Lord has blessed us with amazing friends and family who will not leave our side and will be there to pick us up when we fall.  We know that we have thousands of prayer warriors out there praying for our family and our precious Dylan.  We know that God is a god of miracles and that He can completely heal Dylan.  Whatever the path that God has chosen for us, we will walk boldly and give Him praise.  We are thankful that God has chosen us to be Dylan's parents and that we get the privilege to raise this amazing little boy.  Thank you for being part of our journey! You are loved and appreciated more than you will ever know!

Wednesday, July 3, 2013

Goodbye Lily.....

Tonight we had to say goodbye to our precious white lab, Lily.  She had been acting strange all week, so we took her in to the vet today.  Originally they concluded that she had diabetes, but after we received her blood work back this evening we found out that it was much worse.  We decided to say goodbye....it was probably the hardest thing we have ever done.  I am thankful that the boys do not fully understand what is going and will always have pictures with Lily.  We told them that Lily had to go bye bye and to tell her night night....Our hearts are sad but we are thankful that she is no longer sick.
 Here is our Lily story :

8 years ago, I was wanting a baby....but after being married only 6 months, Erik suggested getting a puppy.  I had always wanted a little, fluffy, white dog.  Erik tricked me.  He took me to a home with these ADORABLE little white lab puppies...I fell in love with Lily immediately! She was soooooooooooooo cute!!! Little did I know that she would be the biggest little terror of a puppy and also grow into the most amazing dog a family could ask for.  If you have seen the movie or read the book Marley and Me, then that gives you a small glimpse into Lily's first years.  She was crazy!! She ate anything and everything in site.  She destroyed a leather couch, countless shoes and clothing, and even ate our Christmas tree! Yes, she did! She ate the glass bulbs and would jump into the tree and eat the lights on the tree.  She was CRAZY!!!! As she grew up, she got better.  Everyone kept telling us that we just had to wait 2-3 years and she would be an amazing dog! I did not think we could survive that long with her! Thankfully, we did.  She calmed down and became our best friend.  Everyone loved Lily, and everyone has a favorite story about her.  Although Lily grew out of her puppy stage, she never grew out of being a food thief.  I guess she thought we did not feed her enough.  She loved Q-tips and cottonballs...the proof was in her droppings.  She has stolen loaves of bread....YES, an entire loaf! She once ate a platter of hershey kisses from a bridal shower.  We came home to an empty platter and thought there was no way she could have done that....but then, pink foil poo showed itself.  She stole a bag of two dozen chocolate chip cookies and went to town...the vet just laughed when we called about that one.  Lily loved the boys.  I think she loved the boys' food even more.  She was so good with them.  As you can see in the pictures below, she would let them "cuddle" with her and love on her and she would always be so patient with them.  She has been an amazing dog to us.  She has been here through all the trials we have gone through.  She was a friend and campanion to Erik when I was gone for 6 months in the hospital with Dylan.  She was our dog, but even more, our furry friend.  She was a part of our family and we will always cherish our memories with her.  We found out late this afternoon that we were going to put her down, so we had a short photoshoot with her and the boys. 





Tuesday, July 2, 2013

Week 24: {Solitude}

As I mentioned before, both boys got sick on our little weekend camping trip....SOOOOO much fun!! Andrew is normally a super active and crazy kiddo....but this day, all he wanted to do was cuddle and be away from everyone. Good thing Auntie Mandy was there to cuddle with! And she was brave enough to lay in the shifty hammock....which later broke! lol! More camping pictures to come later! So many fun things going on this summer and I want to catch up before our California trip next week! YAY for beach pictures!





Week 23: {Yummy}

Here are a few photos of some awesome camp food that my amazing sister in law Renee made. She is the bomb! And the food, well, it was sooooooooo delicious! The camping trip was a little rough to say the least because both kiddos got sick....but at least I was able to snap a few shots!!


Week 22: {Pure JOY}

The boys LOVE brushing their teeth! I hope it always stays this way. They both race to the bathroom to see who gets dibs on the super awesome stool that their great grandpa made! Thankfully, Grandpa has since made an additional stool so there are no more near fatal accidents of being pushed off :) I still have to do most of the brushing, and then they just chew and suck on the watery toothbrush. I love that they love this bedtime routine and I hope we can always make it a fun time!





Sunday, June 30, 2013

I am a little behind....BIG Surprise :) Week 21: {What Makes Me Feel Safe}

Everyone, meet Lovey and Ducky.  They go everywhere with us, and if they don't, I am in BIG trouble!! Dylan has become obsessed with Ducky.  We have two of Ducky and Lovey and for that, I am very thankful! Ducky and Lovey tend to get very dirty! We lost a Lovey at the zoo not too long ago.  I noticed once we were in the parking lot and then went back and searched the entire zoo with no luck.  Andrew cried the entire way home, and so did I! Who on earth would take a child's lovey?! If I found something like that I would run and return it to lost and found because I know some child would be crying searching for it.  I got home and scoured EBAY until I found a replacement....$25 later, replacement Lovey was on its way.  I cannot take my chances with just one :)  When Lovey and Ducky are around, all is well and the boys are happy.  Dylan likes to talk to Ducky.  He tilts Duckies head and shakes it as though Ducky is talking back....it may be the cutest thing I have ever seen.  I love how they can be completely calmed down, just by having their little friends around.  These pictures were taken during our seemingly endless month of sickness.  Someone has been sick each week in June.  To say it's been rough would be the understatement of the year.  But we survived and everyone is happy and healthy now! Just in time for vacation! During our month of sickness, we had a lot of pajama days....this was one of those days :) 






 I LOVE THEM SO SO SO SO MUCH!!!!

Tuesday, May 21, 2013

Week 20: {Simplicity}

Simplicity is.....playing in the backyard with your best friend.  It is having fun with the little things in life and not always having to venture out to have a good time.  Dylan had his little girlfriend Kara over for a play date.  He loves it when she comes over! They have so much fun together and play well with each other.  There is even a lot less fighting between the boys! Sadly, little Miss Kara and her family are moving in a couple of months.  We will have to squeeze in as many play dates as possible before she goes!