Not Again

I wish I was writing this blog post to inform you all that the awful vomiting had continued to stay far away from our son.  Unfortunately, I am instead writing to inform you that the vomiting came back worse than it had been previously.  The odd thing about this whole process is that he had an amazing week when he was receiving the chemotherapy, but when we arrived home it got much worse.  He was vomiting so much that we often lost count after 25-30 times in a day.  After many calls to Doernbecher and his condition worsening, we opted to trek back to Portland to try to get some help with the nausea.  The most worrisome part of it all was that Ari was beginning to expel large amounts of blood.  With his platelets low due to the chemotherapy, they were concerned that he would not be able to clot any tear within his stomach or esophagus.  Luckily, the blood went away within the next 24 hours after some pain medication and a platelet transfusion.

Currently, we are still in Portland at Doernbecher hoping to, once again, try to get a handle on this nausea and vomiting.  Ari is neutropenic, but his counts are recovering well.  He is pretty uncomfortable at this point due to the constant vomiting for 4 days prior to coming up to Portland.  His voice is raspy, and he grimaces in pain when he coughs.  The doctors have agreed that it would be beneficial to stay through the weekend to manage his pain with IV medications and trial the use of a relatively new anti-nausea medication.  We used this medication for 3 days at the beginning of this round of chemo, and it seemed to have a positive effect.  Normally, this medication is indicated for the first few days of chemotherapy administration then discontinued.  Well, Ari is not the "normal" case.  Our doctors have suggested we try to give him the medication daily to see if it helps with the vomiting.  Luckily, there are very few side effects with this drug; however, it is somewhat uncharted territory using the medication for longer than 3-5 days.  There are only a few case studies that have used the drug on more of a long-term basis.  Honestly, we are a bit nervous about this, but our doctors seem to feel comfortable with the use and have reassured us that we can stop it at any time.

We will hopefully get to head home sometime early next week.  We are really hoping our little guy has a good week after his counts recover and the doctors develop a good plan for his nausea.  As much as we don't particularly like to be in the hospital, we more do not like Ari to be vomiting or in pain.  Please pray for the nausea to be held in control and for some relief for Ari's body.  We are so grateful for all that read and share our story.  We continue to not know how to fully express how grateful we are for all of your thoughts, concern, and prayers throughout this crazy journey.

Ari's not feeling great but hanging in there!

Could it be?

We started round 5 of chemo this week.  We were admitted on Monday and the craziest thing happened.  I will start from the beginning.  As many of you know, Ari has had some fairly large issues with nausea outside of chemo nausea.  The doctors and nurses actually said that they have never seen a case so bad.  This is not one of those things you want to hear about your son, of course.  The next step for us was a consult with Boston Children's Hospital and another GI consult to see if something was missed.  The idea that Ari could have allergies was thrown around but dismissed fairly quickly.  The biggest question for the doctors was why his body was creating so much mucus and phlegm.  The stomach obviously does not want it there.

When we arrived on Monday, Ari had already thrown up 9 times between the times of 6 a.m. and noon.  This is very typical for him.  We were admitted around noon and they gave him some Benadryl to help him sleep.  He has received Benadryl many times before to help with sleeping and nausea.  Colby and I didn't realize that his other nausea drugs for the day had not been given yet. Ari went from noon to midnight and didn't throw up once and his chemo had started during that time!  Talk about crazy!  We decided to hold off on all other nausea meds besides his chemo nausea med and Benadryl and see what happened.  Sure enough, Ari had a great night with only a couple very small bouts of vomiting.

By the morning, I was bursting at the seams to talk to a doctor about what had just happened!  I mean we have used Benadryl in the past to try and help control his chemo nausea.  Honestly, Benadryl has never really helped Ari with chemo nausea.  Those drugs are just too crazy!  But this time the Benadryl was controlling his mucus production, thus helping with his nausea that is unrelated to the chemo, the nausea that was often attributed to the fact that Ari was just a "brain tumor kid."

After talking to the doctors, who were as stunned as we were, they confirmed that there is a good chance he has allergies which have caused his body to create mucus, and his already sensitive stomach can't handle this.  We have been on chemo for three days now and Ari is still experiencing some nausea that normally comes along with the chemo, but it is nothing like what he has experienced before.  Relief!  Praise Jesus for a few days of sweet relief!  Praise Jesus that they may have found the cause and an easy way to fix this horrible nausea he has faced!   They are going to try some kind of allergy medicine once we get through this week of chemo so he isn't zonked all the time from Benadryl.

Thank you to the many people who have prayed for Ari's nausea to stop and for answers to be found.  We have no doubt that God led us to this answer.  We are hopeful Ari will have genuine relief and that this will open doors for him to learn to eat and drink again.

Below are a few videos from when we were in the hospital on Monday afternoon.  You can tell Ari feels good and is happy to have a little break for his body!    We are so thankful for these sweet moments!

Ari and Daddy are being silly.  It's such a sweet sound!

Ari has some pretty good smiles in this one!

Sorry this one is sideways, but I couldn't not add it.  Colby gets the best little giggles out of this boy!

Below are some photos of Ari at home and in the hospital.

Ari and Colby are working on sitting and playing again.

Ari is getting chemo through his Omayya port.  He did a very good job of staying still.  The doctor and nurse were amazing.  They even sang songs with Colby and me as we were trying to keep him calm.  

Ari was seriously loving his animal book.  He even tried to mimic the sheep, monkey, and lion sound.  Super cool! 

Ari was "enjoying" a little hospital PT time.  They come right at nap so he is always a little grumpy for them, understandably so.  

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