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!