Eyelashes, Ears, Delays; Wiggles, Babble, and Play.

One thing that people have always commented on about Ari is his beautiful long eyelashes.  He has the most incredible eyelashes!  Since the day he was born, I have been in love with those beautiful blue eyes and long lashes.  When we started chemo, they said that kids could lose their lashes but usually they don't.  Over the last few weeks, Ari's eyelashes have started to fall out.  I know it is a small thing in the big picture of what is going on, but it is still so sad to see.

The doctors warned us that on one of the chemo drugs, there would be a good chance he would lose his high frequency hearing.  As a parent, this is difficult to swallow.  Knowing you are signing a paper to give the go ahead when you know the result causes hearing loss is extremely difficult; however, the potential reward far outweighs the risk of loss.  At Ari's last hearing check, we found out he has lost more than his high frequency hearing.  He can still hear most conversation type speech which is good.  They will do a more extensive test once we get through the induction phase to determine what steps need to be taken with hearing.

With every drug, there are crazy side effect possibilities - infertility, heart trouble, hearing loss, cancer, and many other small things.  But the scariest thing is the thought of cancer returning or taking over sweet Ari's body, so you say, "yes."  Yes to all the drugs, procedures, and steps.  The continual battle is the fear.  I am in a constant state of fighting for truth - knowing that God is in control and that he loves Ari more than I do.

We went up to Doerenbecher on Monday to start round 5 of chemo.  When we got there, they took his blood to check counts which is routine.  We found out his ANC had dropped back down to 120.  It has to be at least 1,000 to start.  As a result, Ari's chemo gets delayed a week.  This is certainly a bittersweet situation.  Do I want more time at home with my son?  Absolutely!  Do I want to delay treatment to kick this cancer out?  No, no, no!  We will enjoy the gift of this time, and I will continue to battle with the fear.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, preset your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  - Philippians 4:6-7

What a great couple of days we have had at home!  Ari has rediscovered his leg wiggle.  It is not as crazy as before but still a fun leg wiggle.  He babbles all day long.  When he feels good, he babbles, "da,da,da."  When he feels icky, he says, "ma, maaa, ma."  Ari also loves to play.  I am so thankful for this.  Today, he has been smiling like crazy.  This is a sight I treasure!

I am so thankful for progress.  I am thankful for amazing doctors and surgeons.  I am thankful that the tumor is gone.  I am thankful for smiles, giggles, and play.  I am thankful for an amazing husband and leader of our family.  I am thankful to be Ari's mother.  Mostly, I am thankful for a God who knows and loves our family; a God who guides us, gives us strength, and offers us salvation.

Ari is playing on his blanket Aunt Hannah and his cousins made!

The Art, or Discipline, of Celebration

I've been meaning to write something on here for quite a while, but I have told myself that I didn't really have the time to do so.  I'm now realizing that the very thing I have wanted to write is preventing me from writing it.  You see, this whole season of life is not only hard, but it's difficult to search for, find, and hold onto joy.  Some very good friends who happen to live in the Chicago area sent us the wonderful gift of the newest Rend Collective compact disc (does everyone know now-a-days that those two words are the meaning behind CD?).  Anyway, the first track on the album begins like this:

We're choosing celebration

Breaking into freedom

You're the song

You're the song

Of our hearts

It continues...

In the shadows

In the sorrows

In the desert

When the pain hits

You are constant

Ever-present

You're the song of my heart

If you haven't had the chance to listen to this album, I would highly recommend it.  This song has been resonating in my mind/heart for many weeks.  But, there's one specific word that I've been wrestling with...choosing.  Am I choosing celebration during this season?  In Richard Foster's book, Celebration of Discipline, he concludes the book with the discipline of celebration stating, "That is why I have placed celebration at the end of this study.  Joy is the end result of the Spiritual Disciplines' functioning in our lives."  Choosing celebration is only possible when we engage in the discipline of bathing our hearts in communion with God.  When we commune with God, we experience "breaking into freedom" because we learn more fully that He is constant and ever-present.  Only then, can we experience joy (which happens to be part of the fruit of the Spirit).  Only then, can we choose celebration because of who God is and what He continues to do.  

Richard Foster states, "Scripture commands us to live in a spirit of thanksgiving in the midst of all situations; it does not command us to celebrate the presence of evil."  Today, I struggle with this whole concept.  Honestly, I read these words, and I'm not exactly sure how to grasp them all.  I do know that God loves Ari.  I do know that God loves Jenny.  And, I do know that God loves me.  I continue to struggle to choose celebrating during this season; however, I am confident in my calling.  I am called to rejoice in the Lord always.  I am called to not be anxious about anything.  I am called to pray and petition to God with thanksgiving in my heart.  And because I believe what Scripture says in Philippians, the peace of God WILL guard my heart and mind.  As peace transcends all that I can comprehend, I will celebrate who God is and what He continues to do in healing and restoring our son.

This past week, we celebrated Ari's first birthday in a hospital room at Doernbecher Children's Hospital.  We celebrated life.  We celebrated God's forming of Ari in the womb.  We celebrated the blessing that our son has been to us over the past year.  We celebrated who God continues to be through this season...constant and ever-present.

Thank you for celebrating along the way through your phone calls, cards, gifts, facebook posts and messages, and text messages.  

Success

Ari waking up from surgery (all pumped full of fluids).

Ari's surgery went well today. Praise Jesus! It all happened very fast after we got the call from Doernbecher to be in Portland for a 12:15 MRI this morning, but we are so thankful for a great team of doctors and nurses who continue to act swiftly for our little guy. We are back up in our hospital room and are very tired. Ari has made some babbles here and there, but for the most part is still recovering from surgery. It is crazy to think that our little guy has had 5 brain surgeries and 1 surgery for a central line placement all before the age of 1! We are thankful that God is restoring his body as he continues to heal and relearn developmental skills. 

We hope to be out of the hospital by Wednesday. Ironically, that will be Ari's first birthday, so it'd be nice to be out of the hospital for at least part of the day. We want to continue to thank everyone for their prayers and words of encouragement during this time. We continue to be blown away at how genuine and generous you all are to our family. 

We will post more later this week, but for now it is time to rest.

The Second Shunt Just Cannot Wait

This morning we contacted Doernbecher because Ari has been waking up every 45 minutes to an hour through the night for the past couple of nights. They decided they wanted to go ahead and do a quick-brain MRI this morning to check his fluid spaces. The images showed the fluid spaces on the left side had almost doubled in a week and a half since his last MRI. We met our neurosurgeon immediately after the MRI and she indicated she wanted to do the shunt surgery today, not Wednesday or Thursday. As she turned the computer screen to reveal the images, we saw that the fluid had built up so much that it has caused a right shift of his brain. Our neurosurgeon indicated that this shift is temporary and the brain will rebound once the fluid is removed. We plead for your prayers right now. Ari will be going into surgery in about 2-3 hours. Thanks!

The Second Shunt

We have made it through round four of chemo.  Praise Jesus!  Ari has done fairly well this round with the exception of one run to the E.R.  from about 1 a.m. to 5 a.m.  I am not sure why every fever has to come in the middle of the night.  Of course, no fevers at all is the preference but if one is going to come along how about mid-afternoon, right?  We are just thankful that Ari was treated quickly and we were able to come back home.  It has been nice to be home a little more often.  We still go up to Portland 2 or 3 times a week currently for outpatient chemotherapy and the occasional blood/platelet transfusion, but our primary pediatrician here in Eugene is working with the doctors at Doernbecher to see if we can get some of his transfusions done in Eugene.  It would be nice to not have to drive quite so far every time.

We did receive some great news that Ari's shunt on the right side of his brain is working beautifully.  The fluid level on his right side went down almost a whole centimeter which is pretty huge.  The unfortunate news is that the left and right side fluid collections aren't working together like the doctors had hoped.  There is a large fluid collection now on the left side.  As a result, Ari will be having his sixth surgery to place another shunt on the left side of his brain.  This shunt should be temporary as well.  They are placing these shunts to relieve pressure that the fluid is placing on the brain.  The hope is that when his brain catches back up to his skull, there will not be a need for the shunt.  The original tumor and hydrocephalus caused his skull to stretch quite a bit which is why there is so much excess space.

We will go back to Doernbecher on Wednesday, June 18th (Ari's first birthday) for a quick brain MRI to make sure nothing has changed.  They will then plan to do the surgery that day or the following.  Happy birthday, Ari!  It is hard to think about another surgery on his birthday, but realistically it is the best gift he could get - relief!  The poor kid needs a little break from all this pressure.  The doctors are still hopeful that this is the cause of his extended nausea.  We are all praying that this surgery will give him relief from the constant pressure and freedom from nausea!  

Loves his Daddy

Bath Time

Ari is doing much better sitting in his therapy chair.  

My Favorite Hobby

Who needs food?  Our refrigerator is full of TPN and medicine.  We are so thankful that this is even possible.  

Ahhh, that face!  

Nap Time

Pictures and Prayers

Ari recovered well from his shunt surgery.  The shunt has done a lot of good for him.  He uses his right side much more skillfully; his clonus has disappeared; and his eyes are bright and beautiful again.  We had a great extra week at home.  We enjoyed many walks outside.  Ari played, babbled, and snuggled.

The main purpose of the shunt surgery was to control Ari's nausea.   Unfortunately,  it was not successful in achieving this goal.  Even on Ari's good week, the amount he throws up is out of control.  He just started round 4 of chemo and is back to puking about 20 times a day.  We are hopeful something will get figured out to help him.  Watching our son vomit until he bleeds is not our idea of a good time.  Specific prayers for this would be appreciated.

Here are some pictures and prayer requests.  Thank you so much for your support.

Ari has been loving those knees!

We had a fun day of playing and smiling!

His little lion friend is very tasty.  

Happy boy :)

Tasting toys!  This is a great thing.  

Ari tried some more of that eating thing.  He wasn't too fond of the apples, but he did like the spoon.  

Ari wanted to hold the bottle himself.  Again, he wasn't too happy when fluid actually came out, but he will get there.  

Family walk

The Kira Foundation sent Ari a package.  The Kira Foundation is doing some really great things.

We celebrate that Ari is playing with both hands!  

Two handsome boys on a walk

Rocking with Dad

Anthony Rizzo, a cancer survivor, sent Ari a signed autograph!  

Prayer Requests:

* Healing and Restoration for Ari's body

* Ari's vomiting will be controlled or will go away. 

* Ari will learn to eat and drink again. 

* Ari will develop trunk strength and the ability to hold up his head.  

* Ari will be able to have rest for his body and will begin to sleep better.  

* Colby and I will stay healthy enough to continue to take care of Ari.  

Over the past several weeks, I have been reading and rereading Isaiah 40.  I will share part of this encouraging scripture with you. 

Do you not know?  Have you not heard?  The Lord is the everlasting God, the Creator of the ends of the earth.  He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.  They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.   

~Isaiah 40:28-31