Restoration

I entitled this blog post, Restoration, for many reasons.  I'll begin with the obvious.

It's been awhile since we've blogged, and we'll try to keep up on it a little better.  We've spent a lot of time in the hospital here recently trying to get Ari's nutrition figured out.  After last cycle's inpatient week, Ari was still vomiting quite a bit and not able to keep any feeds in his stomach.  This isn't necessarily new to us, but it seemed to be a bit more pronounced this time around.  We were beginning to see some signs of dehydration and were scheduled to be back up at Doernbecher the next day.  Upon arriving to our outpatient appointment, we learned Ari's counts were pretty good at that point, but our oncologist was concerned about his overall nutrition.  This didn't come as a surprise to us.  If anything, we felt a bit of relief at the next step.  Our oncologist wanted to admit Ari to start him on TPN (Total Parenteral Nutrition).  We've known this was a possibility but were trying to give Ari an opportunity to utilize his "gut" for nutrition if he was able.  This is where the restoration comes in.  Ari began to gain weight.  He began to make wet diapers consistently.  He was getting what he needed.  But, wait.  He didn't seem to have more energy with the added nutrition.  We figured it would get better with time.

As the week continued, they decided to keep Ari through the weekend until his scheduled follow-up MRI the following Monday.  This MRI was scary nonetheless.  This was the first imaging since the process after his initial brain surgery.  So many questions raced through our minds.  Is there a new tumor?  What if there is a new tumor?  How could there be a new tumor?  What if there's not a new tumor?  Are his brain components rebounding from the initial compression of the tumor and hydrocephalus?  I'll save the suspense (although, most of you already know all of this...).  There was not a new tumor.  His brain structure is intact and seems to be unharmed as far as the MRI can tell.  First of all, praise Jesus.  Secondly, what a relief in our hearts.  What the MRI did reveal was some excess fluid on the outside of his brain with some residual blood from the initial surgery.  This was placing some pressure on his brain causing some sleepiness and irritability.  Well, that explains that!  Ha!  So, this meant another "minor" surgery.  It just "simply" required two "birdholes" to be drilled into his skull so that they could access that space to relieve some of the pressure by draining some fluid and cleaning out the space.  Obviously, the previous sentence has some sarcasm laced into it.  The surgery was still a big deal to us.  Our stomachs were still tied into knots before and during the surgery.  We still freaked out when the surgical nurse came to get us in the waiting room and ushered us into the consultation room to meet Dr. Baird (our neurosurgeon) after the surgery.  Everything went fine.  Again, praise Jesus.

Fast-forward to today.  The relieved pressure has really aided in restoring other things about Ari.  He has begun to vocalize much more recently!  Again, praise Jesus.  That was one of the biggest things that we missed.  We missed his voice...his babble...his cooing.  Restoration.  As we continue in this process we continue to petition to God to restore Ari, to restore everything about him.  I praise Him for continuing to show us progress in restoring Ari.  I praise Him for the strength that He continues to grant Jenny and me throughout this process.  I praise Him for the many people that He has put us in relationship with at Doernbecher Children's Hospital.  I praise Him for the babble and cooing.  I praise Him for a wife that desires to hang Scripture in Ari's room as a constant reminder of Truth.  I praise Him for the reminder that He hears our cries, even when they are faint.  I praise Him for restoration...of Ari, Jenny, and me.

Cycle 3 began today with me in Eugene trying to complete school stuff and Jenny and Ari up at Doernbecher.  Ari is well.  Jenny is strong.  We continue to ask for your prayers for restoration of Ari's body and of our hearts in relationship with God.  We love you all.

c

Cycle 2, Week 4

Well, here we are the night before we head back up to Doernbecher for another inpatient chemo week for Ari. I'm not going to write much tonight as I am growing more tired as I type, but I just wanted to send a quick note out to ask that you continue to pray for healing and restoration for Ari's body. The above picture was taken yesterday as Ari was playing. We rejoiced in his ability to grab the toy and bring it to his mouth. These continued improvements bring smiles to our faces.

Thanks for all your generosity through this season. Your prayers are felt as we continue to feel unified through the Spirit with all of you. If you have a moment, read Exodus 17:8-16. We often feel like Moses in this passage, with friends, family,  and even strangers holding our arms up when we grow weary. Thank you.

c

The Beginning?

So this post marks the beginning of this blog dedicated to our son's fight against AT/RT, a rare, aggressive form of brain cancer.  It does not, however, mark the beginning of the fight.  I will briefly map out our lives over the past couple of weeks.

On February 25th, our amazing pediatrician agreed to see our son after hours in her clinic due to some motor regression concerns that we thought we'd observed.  From that visit, we were directly admitted to the local hospital for a scheduled MRI the next morning.  The MRI the next day revealed severe hydrocephalus (excess fluid on the brain) and a "significant" brain tumor wedged in between his cerebellum and brain stem.  Our son was then taken up to Portland to Doernbecher Children's Hospital to have brain surgery the next day.  We met with the neurosurgeons the night we got to Doernbecher, and they informed us of all the "risks" with his tumor.  It was overwhelming to say the least.  Surgery took just over 6 hours and was successful, in that, the neurosurgeon was able to completely remove the tumor (which we would later find out that with this type of cancer does not happen).  Then the process of healing and waiting for biopsy results began.  Healing seemed to be going alright, but Ari was suffering from something called Posterior Fossa Syndrome (click here for more reading) which we had been informed may be a possibility based on his tumor being in the posterior fossa area of the brain. We were moved out of the PICU on Sunday evening after Thursday surgery with hope of going home before more "treatment".  On that Sunday evening, Ari began having post-operative seizures that became worse as the night went on.  They progressed to something called status epilepticus, basically meaning that the seizures would not stop.  That was the night we almost lost our son due to him not being able to breathe during the seizures.  We were rushed back to the PICU where we spent the next week while they tried to figure out his seizure medication(s).  It was during that week that we found out the diagnosis of AT/RT (atypical teratoid rhabdoid tumor).  After days and more tests, they felt they found the best "combination" of medications; however, they were unsure whether Ari would "wake up" from his current mostly-non-responsive state.  Well, he did!

We were moved up to the intermediate floor once again and guess which room they placed us in.  That's right; they placed us in the exact same room that we were in when he began having seizures.  Talk about an unsettling feeling.  Luckily, it went much better.  Another week of trying to figure out feeding, medications, and treatment plans left us still in the hospital for the start of chemotherapy.  Week one went "as good as expected" according to the oncology team, but any parent would not feel it went that well when they have to watch their child vomit repeatedly throughout the week.  We were scheduled to go home that Saturday, but Mr. Ari decided he would yank his feeding tube out which kept us in the hospital through the next round of chemotherapy.  We were actually excited that he grabbed and pulled it out because he was more purposefully moving his arms which he had not done previously.  The next round of chemo was not as intense and we were able to go home the night after they administered it.  Home was stressful.  Home was hard.  Home didn't feel like home anymore.  Ari developed a fever on the Thursday after we left the hospital on Monday and we found ourselves back in Portland at Doernbecher due to him being neutropenic.  Today we sit in the hospital praying for his white blood cell counts to increase to a safe level.

Obviously, there are so many more details to this story that would take me much longer than this already-long post to type out.  I wanted to type an initial post briefly (ha!) mapping out our journey so far.  We wanted to also thank you all for your continued prayers for healing for Ari and strength for our family.

c