Small Steps

Before surgery, Ari was throwing up on average 15 times a day when nausea should have subsided.  Some days were more, some less, but never less than 10 times a day.  Everyone knows people throw up when they are on chemo and maybe for the week after as well.  However, Ari was always sick.  He was sick when he shouldn't be.  It is very difficult to watch your kid be sick and not be able to do anything.  It is especially difficult to watch him be sick continually without reason.  Doctors just kept telling us that he really shouldn't be sick, but he is "a brain tumor kid."  This is a phrase we have come to hate.  It was almost as if they were saying, well,  it looks like your kid will just throw up all day and night.  That does not feel good at all.

Then, the MRI showed more fluid and they thought it could be the reason for his nausea.  Another surgery based on the phrase thought it could be felt scary, but we felt we had to give Ari a chance to not be so sick.  We have experienced 2 full days where Ari has only thrown up only once!  It has been so nice to have some rest for him from this.  It is still early to tell if the fluid was the only cause, but we are certainly hopeful he will have relief - relief from the nausea, pressure, and pain this excess fluid caused.  At this point, we can take a couple of weeks of chemo nausea, but it would sure be nice for him to get a small break from it once and awhile.

He has been in a great deal of pain today though.  It has been hard to see.  Praying for our sweet boy to have some peace and strength for his little body. If his pain is less, they think we may go home tomorrow.

Small and Happy Steps
* Ari has had a couple days without nausea.
* We found out Ari's tumor is sporadic, not genetic.
* No new tumors have formed!
* We are halfway through induction phase of chemo!  We just finished week 9 of 18.

The Shunt

Ari after his Shunt Surgery

Ari and Daddy Snuggle Time

Ari is such a stud!  Today he had his 5th surgery in less than 3 months.  He is doing pretty well.  He has slept quite a bit, is pretty swollen, and has had some pain.  Overall though, he is recovering well.  They tried to drain the fluid about three weeks ago that was causing pressure on the outside of his brain, but the fluid re-collected and has been causing more pressure.  He has been nauseous, irritable, tired, and not as interested in playing.  We have been missing our smiley, playful little boy.  Today, they decided to go ahead and put a temporary shunt in on one side of the brain to drain the excess fluid on a continual basis.  We are hopeful that this will work and will help resolve the issues Ari has been dealing with on a daily basis.  Ari will be at an increased risk of contracting an infection because the shunt is near his Omayya port and he is immunocompromised. We will be praying hard against infection and for relief for his brain.  They will be delaying his chemo for a week so his body can heal.  We are hopeful we will get to go home in the next couple of days and spend some quality family time together before chemo starts up again. 

We have been so thankful for the care of the wonderful professionals at Doernbecher.  The doctors and nurses have been such a blessing.  We have an incredible neurosurgeon and oncologist.  Praise Jesus for their care and skills!  

Also, Ari has not thrown up once today!  Praise Jesus! Praise Jesus! Praise Jesus!  

Praise the LORD, oh my soul, and forget not all his benefits- who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and kindness.

Psalm 103:2-4

- J

A Smile

I am not much of a public speaker.  Even posting something for all to read has felt intimidating which is why I have not made a blog post; however, I have decided to be the informer.  I will leave the insightful posts to my husband, and I will just fill you in on the day-to-day stuff.  I want to make sure we are keeping people in the loop with what is happening. Sometimes that can be extremely difficult because time is a serious issue, but it is important for us to share because we know many people out there love Ari too.  We are so grateful for this.  So grateful that people love Ari well and love our family well.  We are so grateful for the many prayers being proclaimed to God.  We treasure those prayers.  So here we go -

We have spent the last week and a half at home!  That is right a whole week and a half!  It has been glorious and scary and exhausting and one of the most difficult things we have done.  Ari has still had some serious nausea issues so we have had difficulty keeping meds down and have had to implement the use of a few IV meds and food.  It has been nerve racking to try to balance all his meds and the med schedule and to constantly monitor how he is doing, if something is wrong, and all that.  Ari has not been sleeping well either, usually due to nausea.  He was waking every 45 minutes to 1 1/2 and getting sick or wanting to be held.  Needless to say, Colby and I have not been sleeping much at all.  It is by the grace of God that neither of us has been sick.  I can't imagine if we got sick and couldn't take care of him.

There were some amazing things about being home.  We saw Ari smile!  Yay!  What a beautiful sight!  His cute little smile brought tears to our eyes and joy to our hearts.  Oh, how we have missed that amazing baby smile! :)  He enjoyed playing, looking out the window, going on walks, being outside under his favorite tree, babbling, and rocking with mom and dad.  It was great having some time in our home as a family.  There were times we could trick ourselves into feeling "normal" again.

We came in late last night (Wednesday) because Ari has been acting a little differently and has had some continued nausea issues.  They did a quick MRI and admitted us and have a full MRI scheduled for 3 p.m.  There is talk of another surgery to try to deal with his fluid issues in the brain.  We are thankful for God's continued goodness, and just ask for his guidance in this situation.  We ask for prayers for clarity and wisdom for the doctors and for us as choices need to be made about his care.  We pray that Ari can be free from this nausea and from fluid buildup and from tumors and from cancer altogether!      
-J

 Playing with dad

The best smile picture mom could get while dad was at work.

 Ari still enjoyed his walks outside.  He would babble back and forth with us while we walked.  

 Playing under his favorite tree with his favorite cup!  Look at those chubby legs!  Thankful for good nutrition again!  

I made him sit up in his therapy chair.  He is not a big fan but at least he was distracted for a bit with his cup.  Loves those cups!