Round 1... CHECK!

From Drew:

Ethan made it home last night, yea!

He is home a day early because he did better than expected. Which we are very grateful.

Cycle 1:
Day 1
He received a dose of CARBOplatin Chemo. This is the stuff that is known for being potent and causing nausea for about a week, however it is also the chemo that passes through the blood brain barrier so it potentially is the more important chemo.

Day 2 and 3 he received ETOPoside chemo.

Day 2
In the evening Ethan was feeling quite sick, had bad headache and had one pupil bigger than the other (strange, but everyone reacts different). Finally, around 9 pm they put him to sleep with benadryl.

Day 3
 Just slight nausea, but he was very self-driven to be good enough to go home- which he did! :)


On September 19,  he goes into the clinic to have his blood checked. Then again on the 26th. They are looking at the blood for many things.  As I understand it, the main items of focus are hormones, white cells, and platelets. This is going to be done on a  regular interval after all cycles/rounds to see if he needs transfusions. If levels are acceptable, we will start the next cycle around October 3.

The next cycle will not have as potent of a Chemo but the quantities will be larger.




We have had many of you praying and supporting us in many ways and we are deeply thankful for it. We have also had many people ask how they can help and I have been unable to answer. This has been due to the overload of everything and the prioritizing of mental energy to pressing needs. Now that I have taken some time to recenter myself I think I have some suggestions.

Food, Gas, and Misc needs are some ideas.

The meals that have been brought have been outstanding!  Thanks!

It has become evident that we are going to have a considerably more expense with fuel (we're predicting this expense to double).

We will be and have already been making extra runs to CVS Pharmacy and Walmart. I believe gift certificates/cards to these would be used.

Gift cards for restaurants and coffee shops around the hospital is also an idea- leaving for food would be good because it will cause us to trust the staff, leave, take a break, and go to eat rather than packing food and staying at hospital constantly.  I think this would create a healthy habit (getting a chance to get away).

Meals brought to our home would be a great gift, especially when we get home from the hospital- the evenings that we are there for chemo and then the few days following.  Knowing that we won't have to think about preparing food will be a great blessing.

Thanks again for all your support and we will do our best to be open to it.

Thanks,
Drew

Day 1, Round A

From Beth:

"Greeting to our friends and family who are walking this journey with us. We are grateful for all the love and prayers.

Ethan will be in the hospital for the next four days for first for six rounds of treatment. The first three days will be administering chemo and the fourth will be recovery.

We will have a 21 day break before we start Round B.

 Ethan has been cracking jokes and trusting his God to get him through this journey. We are grateful for friends who have been feeding us good food. Feeling the love of our heavenly father through his people. "




 Please Pray:
- Strength through chemo.
- That the effects of chemo will be manageable.
- From Ethan's Family to continue feeling the Lords mighty hand.


Keep checking in for updates!!
Team Adams
 ethanadamsblog@gmail.com

The beginning pictures

 Children's Hospital in New Orleans

 Aunt Kelly and Uncle Jon Arrive morning of surgery

 

 Explaining brain surgery to Ethan

 Getting ready for brain surgery

 Talking with Dr Green, Neurosurgeon after first procedure to relieve fluid build up.

 

Tabi and Seth

   

Team Adams waiting in the waiting room

 Ethan still under effects of anesthesia…Tabi, wanting to draw a mustache on him. :)

 Momma keeping him in bed as he’s coming out of anesthesia

 Recovery after surgery

 you're STRONG AND COURAGEOUS, Ethan!

 

 Aunt Kelly, our favorite nurse!

 Uncle Jon, drove all night to be here!

 Dr. Greene showing Ethan video of his brain. Cool!

 ICU recovery

 

Finally HOME!!

Sunday after surgery

The beginning updates

Text updates from Drew from the first week:

September 2
Ok here is the low down.
This past week Ethan has had fatigue, dizziness, headaches, vomiting (only 3 times). Seemed like flu but yet was not normal for Ethan and flu? So after one Dr. Proscribed nausea meds and 2nd dr. Migrane meds and good advice from Aunt Kelly we took him to the ER today and they did a CAT scan.  They found to much cerebral spinal fluid (CSF) in his ventricles and sent us to Childerens Hospital in New Orleans. 

The neurologist (Dr. Green) at Children's has pointed out a growth (tumor) in the 3rd ventricle (the drain for CSF) in his head that is blocking the the ventricle. There are lots of different kinds of growths and at this time no way of knowing what it is. Chances are high that it is nothing serious (I.e. cancer) and it may have been there since he was born. An fMRI will be done Tuesdays morning to see it more clearly. They have given him a steroid and a drug to limit the production of CSF while we wait. It appears the tumor is about a 1 inch in size.

Due to location it is not recommended to be cut out so after the fMRI and a sample of the CSF are analyzed the decision to take a small pice will be made and then best treatment plan will be decided.  It is almost assured that radiation and chemo will be part of this. Quantity and length of treat will not be known till after tests.

Everyone is in good spirits... so far.  Ethan was asleep by the time we talked to neurologist so he is not yet aware of the extent.
This is from drew

September 4
Finished up with Dr. Green about 10 PM. Ethan asleep and Tabitha and I are staying at hospital tonight.

Learned a bit more tonight about the procedure. It is called third ventriculostomy. The main objective is to get a sample of the CSF that is close to Gandalf (the tumor), place a hole directly into a cistern located below 3rd ventricle(this is the new aqueduct) and then if possible to get a piece of Gandalf.  The CSF will be sent off and searched for markers(proteins) that tell what kind of tumor he is. The nickel size hole is only in the skull at which at which point the scope will be pushed through the neurons to the 3rd ventricle. This would be similar to pushing a wire through a bale of hay and does very minimal damage. The procedure should take 30 minutes with the chance of going home by the weekend. The results of the CSF will not be known for a few days. The current speculation by the radiologist is that Gandalf is most likely a Germ Cell tumor or a Pineal Cell tumor. We are hoping that he is of the germ cell family. They are very easy to kill with little radiation treatment. 

The reason for making the biopsy the second goal rather than the primary is the angle at which is necessary to guarantee getting the biopsy would not allow creating the aqueduct, require leaving a visible scar on his forehead and due to the low risk of the procedure it is suggestible to do a second if needed later. The angle that will be used tomorrow is marked by the red lines on pictures. 

There are always risk: short term memory and diabetes(the hypothalamus sometimes releases extra stuff for a while) both of which are temporary and less than 3% chance. This procedure is done over 40,000 times annually in the US. There is a 20% chance the new aqueduct will close itself, however even if that should happen Gandalf maybe be gone and it may not be needed anymore.

September 7
He is home! Last night we brought him home.

He has been diagnosed with a non-gemerminomatous germ cell tumor. There is 85% success rate with removal of these thru the use of chemotherapy and then radiation. The markers indicate that it is malignant but the treatment is basically the same (malignant or not) only increased quantity. 

He will go in this week to start it will take approximately 25 weeks to complete.


September 10
This morning Ethan had his "port" installed in his chest and will be heading home today! He is quite sore!

The port is a tube that runs directly from his artery to a gizmo on/in his chest and is a permanent fixture for the next 6 months. It is located right in the middle, so we now call him Iron Man. (I was hoping for a port model that had cool lights in it just like Iron man, Oh well) This gives direct access to his blood stream is for meds, chemo, blood withdrawals, ect. It removes the need for iv and constantly poking for bold checks.

He will be readmitted for chemo Thursday 9/12 and "Cycle A" will begin. Cycle A consistent of approximately 4 days in hospital; 3 will have chemo administered and 1 to see how he does. Then home for recovery and preparation for Cycle B which is scheduled to start 3 weeks from Thursday 9/12 and will b approximately 8 days in hospital.

Introducing Ethan

 From Beth:

I would like to introduce to you our son Ethan Adams. 

        Those of you who already know Ethan know he has a sweet spirit and is full of joy.  Ethan has been given an opportunity to rise with courage on a journey that entails battling his brain tumor. 

         On September first, Ethan was admitted into Children's Hospital because of fluid build up on his brain. Then on Wednesday, he had surgery to release the pressure and to see if they could get a biopsy of the tumor. Ethan was incredibly brave and courageous. I am a very proud Mama!

         Ethan then recovered and we were able to bring him home for the weekend. He was so glad to be home!

          Tuesday was "port day" and again Ethan did very well.

         This morning we head over to the hospital and Ethan begins his fight against this cancer.

We are very grateful for all the love, support, and prayers!!!

God is our refuge and strength!