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.