Chemo is done!!

From Drew:

This was without a doubt, the toughest cycle!  Thanks to Benadryl and Ativan, Ethan slept through most of it. We had them both set up on 6 hour rotation so he would get Beny then 3 hours later Ati. With his tolerance so low, he just wanted to sleep through the discomfort.

But he did it! He hung in there and pushed thru it. He is one toughest kids and we are proud of him! In the midst of this, he was adamant  that we provide some sort of gift to the nursing staff while we were there, so Beth got them a bunch of baked goods.

So what is next? I perceive we are only 1/3 of the way thru this journey at this point. The three parts being chemo therapy, radiation therapy, and then recovery and adjustment to being a survivor. 

The day before this cycle, we met with the radiation staff to discuss our treatment plan. Dr. Zakris is the head doc and seems like a very patient doctor whom has no problem with long awkward silences.  Lol

The radiation therapy will be 30 doses and last 6 weeks with photon radiation being used. I was surprised to learn it takes a week to just design his therapy. It will be designed in such away that only his third ventricle will receive radiation. As you all have seen, there is a mask that will hold his head down and in place. This will be trying for him, but he should be OK due to each session only lasting 15 min.  For those that have not done the math, we will be taking Ethan to radiation therapy everyday day Monday thru Friday for six weeks. This will be trying for us as the hospital is a hour drive one way and every Monday will be extra bit of time as we will visit with Dr. Z and on Fridays (I think) we will be visiting with Dr. V (our oncologist) after therapy.

Everyday we will be on the road a minimum of 2 hours and 2 times a week will be extra time  waiting on doctors. This would be to manageable if we were not already running low on steam.  For those that have asked, I think over the next 6 weeks either of these long days a home meal prepared for us would be massive blessing!

We don't have a specified date when radiation will start, but they are hinting at 3 weeks from now.  The 14th, we will have quite a few tests done.  hearing, eyes, MRI, hormones, spinal tap, blood, etc.  After we get the results, they'll tell us when we'll start radiation.

Side effects:
It was described  to us as "we will basically be sunburning the brain" so imagine a good old sunburn and now put that on your brain.  The good thing is the brain does not feel however the brain will swell which will cause his sight to get worse.  That by far is the most discouraging thing for Ethan. It is his eyes, falling behind in school, and lack of tolerance that has brought him to tears the most the past few weeks.

How is it the brain heals? Well, you sleep. He will have increased fatigue which again has been very discouraging and we anticipate he will fall further behind in school.  He told me the other day thru tears, "Dad, I don't want to have to redo my freshmen year."

So, now we will be spending a minimum of 10 hours a week on the road, hours waiting on doctors, and trying to balance how much to push the sunburned brain to do school. Fun! But he kicked chemo’s butt and now he will do the same to radiation.

He will also have skin burns on his ears and will continue to lose cognitive ability.  This is basically his reasoning and memory.  His third ventricle also houses his pituitary gland which controls hormones- they will be monitored weekly to help keep normal.

We are going to need help with gas  over the next few weeks.  So if anyone would like to pitch in here it would be greatly appreciated and can be done thru the service that Meagan set up.

The last 1/3 will be recovery.  How do you deal with never knowing and always wondering if there is cancer again? How do you handle having a mind that doesn't work quite like it did before (due to lost cognition). Then the eyes? Will they come back? No one knows?  How long? Add the desire to catch up in school to be with your buddies....or will you watch them walk the stage while u sit in the crowd?  He is strong enough!! Won't be easy in the slightest but he will do it! We will with the God given strength. 

For those wanting to help: please just do it without asking. We are putting all our attention into him and not thinking about ourselves so we find ourselves unaware of our own needs when asked.

Thank you.

Last chemo!

Today is our last chemo admit Ethan will be in the hospital for 6 days. His labs are good we are thankful!
After, two transfusions last week and a rough couple of weeks, Drew suggested that we head out of town and see Tabitha!! We packed up last Friday and headed to Northwestern to surprise Tabitha. The joy of being together was just what Team Adams needed.(Thank you Armando our sweet neighbor for taking care of Team Adams pets! You blessed us!:))

Ethan has had a good week getting some energy back and even tackled some school work.
As we end this chemo we also are getting ready for 6 weeks of radiation.
Yesterday we met with Dr. Zakris who will be Ethan's radiation oncologist.
Ethan was fitted for a mask that will hold him still for the 15 min. Of radiation 5 days a wk. for 6 wks.
We also had a great visit with Uncle Chad and Aunt Gina it is always a joy to have family visit. Laughter is such a great way to enjoy each other's company we had our fill with sweet Chad and Gina!!! Thank you both for some great food and great laughs!
I wanted to also thank the many of you who have donated,sent care packages and cards!
We are grateful for your support through this journey! Love and Blessings to you all!

Friday blood results

Today the blood tests showed that his Red blood counts are doing ok, but he did need another transfusion of platelets.  

 

Transfusion and Morale

From Drew:

Ethan's got his first platelet transfusion today. His platelets were down to 36. Sunday when he had his bloody nose it was 68. It should be around 150+  So, since it has been steadily dropping, they gave him some today. The Red Blood count is low as well but we are waiting till Friday and will recheck them before we do a Red Blood Transfusion. here is link to explain the blood stuff more:

http://www.cancer.org/treatment/understandingyourdiagnosis/examsandtestdescriptions/understanding-your-lab-test-results

We as a family are getting worn out and it is showing up here and there. I started to wear down about 2 weeks ago and the rest have followed suit. We have received emails from both of Charles's teachers about grades and behavior's, Ethan had the most difficult Chemo yet, most likely due to having a virus and with each treatment his system get beat down more. Just doing home work takes him over the edge emotionally and his ability to handle the pin pokes from drawing blood, shots, and accessing his port  is virtually gone. Beth is back in school taking some tough subjects and working 2 days a week for her old boss.

first blood transfusion

From Beth:

Ethan is getting his first transfusion today.  Went in to check his counts and his platelet number is 36 which means it is too low. He is getting platelets to give him a boost.

Thankfully, we are almost done and will be heading home tonight.

Thank you to the many of you who gave blood on Ethan's behalf.

We are grateful for your gift because it is giving Ethan life today! Thank you for your prayers!

Update on the ER visit

Quick update-

Ethan and family are home. At the ER, they were able to get the bleeding to stop.  They did labs and his blood counts were low, but not low enough for a transfusion.

They were able to go home but with the instructions to watch for more bloody noses- chances are, if he does have another bloody nose, after the ER, they will take him back to Children's for a transfusion.

Chemo can drop the red blood cells resulting in low oxygen in the blood, making it flow thinner.  It also can drop the white blood cells decreasing platelets, making it hard to clot.  If the counts were lower, a transfusion would help bring both up to a better level.

  

Adams family at the ER :)

Thank you for your ever continuing prayers!

Prayer!!

Meagan here. Just got a phone call from Bethie. We need lots of prayer for strength and healing. Ethan has been fighting a cold for awhile,Friday his got worse and so they took him to the ER because his eyes felt like they were getting worse. After some tests, They were told to watch him and for bloody noses. The weekend has not been better and today they are on there way back to the ER. His nose has been bleeding for 2 hours and they have not been able to stop it. They will check blood counts and hopefully get some help figuring out what is going on. Pray again for strength and don't hesitate text, email, or Facebook encouragement. It has been a long weekend for them! I'll update more as I hear it!

Chemo update

From Beth:
We are in our third day at the hospital and Ethan slept all day yesterday  because of nausea. He is fighting a head cold and this is makes it tough too! Today, Drew said he had a good night sleep and was awake a bit this morning. He will receive his last chemo this afternoon and will be home late tonight. Thank you for praying for Ethan!!



From Meagan:
Got a text from Bethie this morning about a need that the Adam's have... Today, Drew's truck has started acting up.  They're thinking that they will have to take it in for repairs. Not sure on all the details, but if there is anyone who could help that would be such an amazing gift! Please reach out if you can help! Email me or talk to Beth and Drew.  I'll update on this when I know more as well!
THANK YOU!

A day in the life of Ethan Arden Adams.

January 31, 2014

Ethan wakes to a warm breakfast and is greeted by his Dad, Mom and Brother Chas. Ethan has been fighting a head cold for 48 hours, so he is dragging a bit physically. In spite of his cold and the next three days looming of chemo he is all smiles laughing and joking around.  He gets ready to hit the road for the hospital, but before he does this he packs up his bags with some comforts from home. He mentions how he is getting tired of collecting his urine. (We start a 24hr. collection every time we come in for chemo) We say goodbye to Bob, Sofia and Lucy. We hit the road, drop Chas off at school and Ethan and I are off on the causeway.

We enter the city and I make a quick stop for a' donut to start this day out right! :) He enjoys his donut knowing once the chemo starts he will not be eating because of the nausea he experiences during the chemo.

We make it to clinic at 9:30 and Ethan’s port gets excessed then they draw labs, so they can get back the results before admitting. We then visit Dr. Leon for another eye exam this was a good visit. Ethan was excited to have Dad show up and keep him motivated during testing. As we wait, in the waiting room for another eye test Drew is trying to read, Ethan will not have this, they begin their love language in action by wrestling and punching each other and cracking jokes. I usually get dragged in by Ethan and at one point I have Drew on my left and Ethan on my right both picking on me. What joy this boy has we cannot help but laugh and smile with him and join in all the playing, wet willies and all.:)

As we finish with the eye exam 2 ½ hours later the doctor says swelling is down and sees improvement! We will see him again in two months. We wait for continued healing for full recovery of his eyes. During Ethan’s visits with each doctor he is asked many questions and in particular with the eye doctor it is a struggle to try and explain his sight over and over again.

After our fun filled visit with Dr. Leon we then head to MRI. Ethan is hungry and Drew runs out to get him a bite to eat. We wait for two more hours for MRI, but at least this gives Ethan some time to eat and enjoy time with his Dad. Drew then says his goodbyes and heads home to work and be with Chas.

 MRI’s are not Ethan’s favorite by any means being still and the noise is rough, but he sucks it up and endures yet another test.  The nurse comes to get him and he heads in to get his MRI and in one hour he rounds the corner and smiles. I ask how the MRI was Ethan says “Best MRI yet the nurse that took me back was fun and the MRI was not as bad because they gave me wax earplugs. I only sneezed one time and it was during a time that it was ok to move, and then those last 8 minutes or so the back of my head was hurting I even had an indention on my head when I was done. But, otherwise the best one yet.”

We grab our bags and head back to the clinic to see Dr. Velez and we wait. It is 3 in the afternoon by now and Ethan falls asleep on the table in clinic for an hour. Doctor comes in to ask more questions go over medications and then we are sent off for yet another test, a hearing test. It is 4:30 Ethan has a successful hearing test. He comes out and tells me the hearing room is so quit he fell asleep and the girl that was giving him the test came over the speakers in his ears and said we are all done, Ethan says, “it startled me cause I fell asleep,” of course we laugh yet again.

We then walk back to Hemat/oncology clinic it is around 5pm now, Ethan is examined by the doctor and asked many questions yet again. After the doctor leaves he turns to me and says I am tired of talking about my eyes. My heart breaks yet again, as it has many times for this boy in all he has to suffer and endure. I told him that it is ok to be tired of this and yes I am sure I wouldn’t want to talk all day about my eyes. It is hard, but YOU are doing great, keep it up we will be in our room soon!! We will have supper soon.

We start hydrating in the clinic this is to get his body ready for the chemo. Ethan lovingly calls his IV pole “Chas”, so when the nurse comes in with the IV pole he greets him Hi Chas!!(Pure JOY!!!)

Ethan has Chas hooked up to him and Dr. Velez gives him his last check up and sends us up to his room.

We gather our bags and as Ethan pushes Chas we head up to Four West Room 444. We are thankful to have a room by this time and Ethan is glad to see a bed. He is admitted at 6 in the evening what a long day for him. We are laughing together because after a long day of tests and little rooms we are thankful to be in the hospital room the very room we were dreading to come to this am. 

Ethan is settled in, so I step out to get him a bit to eat,” what do you want for your last meal buddy?” Ham and cheese sandwich and mac-n-cheese. I return with his supper and watching him enjoy his food and the rejuvenation that came with it. We enjoyed each other company and realized we were laughing yet again over silly things “we must be tired Mom” Ethan says.

 I was praying with Ethan and saying goodnight, when Ethan grabs my hand and looks at me,” Mom it was a good day I got to hang out with you and Dad today, I am very thankful for you and Dad!”

A day in the Life of Ethan Arden Adams.

Psalms 16:8-9

I know the Lord is always with me. I will not be shaken, for he is right beside me.

No wonder my heart is filled with Joy, and my mouth shouts his praises!

My body rests in safety.

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