Alaska!

In August we were more the blessed to find out that we were going to be going to Alaska for Ethan's "Make a Wish"wish.

The trip was amazing that it is hard to put in words how much fun we all had as a family. The highlight of course was seeing Ethan enjoy seeing whales, puffins, and much more. Ethan loved the puffin birds enough that he decided he wanted to go to the sea life center and check them out up close, so we did, when we got to looking into the place they had a puffin encounter that taught you about puffins and then allowed you to hand feed them this was incredible to see Ethan get excited about this and want to do it!

Of course, as an emotional Mamma I was misty eyed many times as I watched him enjoy this trip.

The train was very relaxing and beautiful the Alaska Make a Wish bumped Ethan and crew to gold star statues and gave us a wonderful time!

The cruise was equally relaxing and was enjoyed by all we loved being cold and watching for many things we have never seen before. We experienced many firsts on this trip these memories we will treasure for our life time.

The dog sledding tour was delightful and interesting to watch. The kids loved holding the little pups!

The kayaking was also very fun!!! James our guide was great, and gave us a memorable tour of Bear lake, so beautiful!!! I have to also chime in about the weather it was sunny every day we were there and just chilly enough for a sweatshirt. We loved the weather!

In our extra time we went to the Sea Life Center and also enjoyed a show in Anchorage, a well as Anchorage Museum. We were so very busy, but so happy to be together. We laughed a lot on this trip and after a year of suffering it was a healing suave for our Ethan.

Words will never be enough for how grateful we are to Make a Wish for making this such a wonderful wish for Ethan and Family.

One Year Anniversary

The start of September is here and with it has brought about many memories of the challenging year.

Ethan has gone through. September 1, 2013 was the day we found the tumor and then on the 6^th we learned it was cancer. These are dates that I will never forget. They are etched in stone in my memory. The whole year of Ethan’s story is much to process and I am sure for Ethan will take his lifetime to fully understand all that he went through and is still going through.

Ethan has started his sophomore year and is one month in. It has been a work in progress to independently get him to the student that he desires to be. He has a very strong determination to push his brain every day and give each subject his best. Drew is at home with Ethan Monday-Thursday afternoon doing homework and on Friday’s I get to hang out with Ethan. Even though Ethan is taking half school days 8:15 to 12:15 it is a full load for Ethan’s brain. Ethan still has chemo fog and can have this for some time. The brain has the knowledge, but he forgets. Often times he understands what is being taught in school, but then forgets in the afternoon. This is a struggle emotionally and can take a toll, but with Ethan’s Dad at his side he is overcoming his school days and giving his brain a boot camp like workout every day.

 Along with his fight to get his brain back, Ethan is working on building up his muscles. Thanks to Shelby (our very own physical therapist) has worked up a plan for Ethan to work out those muscles. Ethan came to me the other day and said,” Where is my Shelby plan I need to work out.” Thank you Shelby!

I asked Ethan if he had anything he wanted to say on the blog?

 Ethan says, ”Thank you for all the support and prayers I have a long ways to go in recovery, so please keep praying for me. Thank you!”

I echo Ethan’s gratefulness in the support and prayers. There is no doubt in my mind that I was able to walk this journey with Ethan because of God’s grace in my life. On the day that I got the call from Drew that the tumor was cancer my brother Jon and sister Kelly were with me, I felt numb and a bit in shock of the news, Jon’s first words to me were “this is not a surprise to God” these very words directed my thoughts to look beyond the test results to God’s plan for Ethan, to trust the God who made Ethan has a plan for him to prosper him not to harm him. By faith each challenge and each surgery, was approached with my faith in that I will trust that God’s love does not ever fail, by faith trusted in my savior to heal Ethan and cure him from cancer knowing full well I did not know the outcome, but I did know the savior already did the hard part he died on the cross for us and because of this sacrifice we would never be separated from God’s love. God’s overwhelming outpouring of his mighty healing powers on Ethan will be another memory of God’s grace and love in our life. I know that those who have walked this past year with me I will forever be grateful for the love you poured into me, from my family and friends who just cried with me and prayed over me to the many that I do not even know, who prayed daily and still do for Ethan. I pray that as ya’ll have done for us may God richly bless you for walking this journey with us!

                            

Update and Make a Wish

Hey all!

Funny how a guy has to be seated at 38000 feet to make the time to write a blog so those that care and support know what is going on. None the less it is the way it is.

The past couple of weeks has been busy and good. We've kept working with Ethan's meds and have finally gotten him off everything except Bacterium (preventive). Ethan and I plowed through a semester of P.E. in 3 weeks. It took us about 5 hours a day and gave us a good taste of what he might be able to handle for the next semester. He did great and it gave him just enough credits to be a sophomore this fall.

We met with the Mandeville High School last week and they did a beautiful job of hearing us as parents and taking direction from Ethan for his desires, limitations, and wants. He will be taking four classes next semester from approximately 8 AM to 1230 PM. All three classes are back in gifted and he will be working with the special services to get needed class notes and tests if he needs them read and any other needs he might have.

As we have come off the meds, stuck with a regular exercise routine we have seen his sight return to the only double vision (he can read) and we have seen the personality of Ethan return! This is so exciting. He actually was able to pin his brother the other day. Lol.

Last Thursday, we met with Make a Wish foundation and learned that we are heading to Alaska for his wish. This is the reason I am flying now. It is a strange feeling to receive such a great gift. We will be gone through August 5. We are all very grateful and excited by it.





We are thankful for this Alaska gift being granted but more importantly, we continue to be blow away from all the regular gifts from all of you! There is no possible way I could have taken the time that was needed to work with Ethan the last few weeks without out your support. There is just no way we could have  happened. Thanks!!

Where we are at.

Hi all

I am going to backtrack a little in time to recap, however, at the moment the cancer is in remission and we are attempting to set your “new normal” going forward. This has been interesting to say the least.

Around June 29th, we took Ethan to the ER for symptoms we thought were related to his ear infection but turned out to be the side effects of taking too much Zophran (nausea med). During this ER visit they put him on Reglian a different nausea med. Remember his meds target the nausea in his brain(vomit control center) not the stomach cause the brain thinks he is sick even though his stomach is fine.  This med really put him to sleep (18 hours a day) and when he was awake he wasn't. He would shuffle around with no energy. He had some friends over on the 7th (the day he got his glasses) and he was only able to stay awake for 2 about hours. He just couldn't keep his eyes open. This was and continues to be a sources of discouragement to him.

 June 16th, I called the Doctor and said we need to do something about this and they changed the med to Granisetron also called Kytril. They also had us start using a Motion patch that goes behind the ear. With in 30 minutes of the placing the patch his eyesight blurred and he got dizzy. This is different than the other eyesight issues we have had where things were more double vision. After about a week of this we became aware that we were taking the meds wrong by only taking half of what we were supposed to. We corrected that where he was getting the full amount over and after 24 hours of this we tried to remove the patch for the next 24 hours to see if he could do without it and be able to see again. His eyes and the dizziness cleared up within 12 hours, but the nausea returned. After the 24 hours of testing we let him decide if he would rather the bad eyes of the increase nausea and he choose to have the patch to feel better.

 So we really don't have a handle on all this yet and will try taking him off the Kytril this next week and see how he does with just the patch.  He still has to take Benedryl at night to sleep so we are going to try melatonin. This is what your brain produces at night when you get sleepy.

We have started a good daily routine here I wake him a 9 and we go for a walk every morning after breakfast and settle into homework shortly after that. With his eyes blurry he cannot read so I have to do all the reading for him. We finished up PE last week and not sure which course we start next week. The school here has been wonderful to work with.

Tuesday the 8th we get his port taken out! This should be the final hospital procedure! We are very excited!

Thanks again for all the support we could not do what we are with Ethan without it.

Support Update

So THANKFUL for the news of Ethan being Cancer Free!!!   Team Adams has been such a support- both financially and emotionally through this journey.  

I wanted to update you all on our opportunity to support the Adams during these four months of transition. (June, July, August, September)

We have 6 families that have pledged to donate during these 4 donation times equaling $750/month.  Our goal is $2,000 during each of these months. 

Please pray and consider being part of this opportunity! Even if you can't pledge to do a donation each month. A one time donation is JUST as important and helpful! See the link below for details on how to donate and more information about our four month opportunity!

4 Month Plan

Cancer FREE!!!

Results from the tests are in.

Ethan is Cancer Free!!!!!

All of the tests have come back and there is no cancer cells, alpha protein is good and MRI is clear!!

We are in awe.

Thank you for your prayers we thank God for his mighty healing hand that brought Ethan through this Cancer journey.

Ethan has gotten his glasses this last Friday. Ethan’s eyes are good enough that the glasses are now able to finish lining up what he sees. He can read for short times each day, but again this can make his brain very tired, so Ethan is able to read half of his summer school each day and Drew and I read for the other half.

The next hurdle will be surgery to remove Ethan’s port, which will be scheduled for the end of June.

 We'll continue to transition during these four months and continue to take it one moment at a time but we are definitely breathing a little lighter.

THANK you for your support and prayers!!!

Tests

Today, June 3, 2014, we start the testing to see if Ethan’s cancer is in remission.

The testing will last two days. Day one we meet with Dr. Velez,  then MRI, hearing exam, eye exam and then back to Dr. Velez before we come home for the night. Day two we have a Spinal tap for a sample of spinal fluid to check for alpha fata protein levels (germ cell cancer indicators).

We expect things to be clear especially after having had the CT Scan last Thursday. It was during this visit that we learned the added symptoms he had been experiencing over the last week or two we related to taking to much Zofran (meds used to control nausea).

 We also learned that the area the tumor was located in also controls the nausea feelings we all have, and the Meds we have been taking are actually aimed at this part of the brain not the stomach. The new meds Ethan was put on this Thursday are also aimed at this same area (the brain) and have been making him feel much better but the main side effect has been drowsiness and thus he has been sleeping 16 hours a day again. At least he is eating well when he is awake.

There will be more discussions on this issue during the next two days because the ER Doctor has suggested the fact that both theses to meds are helping points to the possibility that there is damage to this area of the brain (nausea control). The problem (nausea) is similar to the eyes in that the stomach is fine as are his eyes, but the brain is telling him he is feeling nausea and struggling to interpret with signals form the eyes.

Open Opportunity

Hi All!

I’m really excited about an opportunity that I would love for you all to pray about being a part of.

Words can’t even give enough justice to what you all have already done and given to the Adams Family.  Seeing the support that all of you have been for them through this journey, I know that the Lord will meet this need as He always keeps on doing.

The Adams family has been able to sit down and come up with a four month plan.  This four months is the hopeful last leg of Ethan’s cancer journey. 

We’ve labeled is to three parts.

Month 1 & 2.  Primary care for Ethan.  The slow recovery for Ethan has made it very hard to leave him alone.  This is a process.  He is recovering but needs hands on attention.  Drew and Beth have found that if they both work part time, one or the other can be with Ethan. As seen in the latest update, Ethan needs help doing his school- a parent to read/ write for him.

Month 3. Transition. This month is pushing Ethan to gain more of his independence.  The goal is that by month 3, Ethan will be able to do more of what Drew and Beth were doing for him on his own.  We’re calling it transition.  Really wanting to create a safety net incase recovery is just that much slower.  Giving Drew and Beth the freedom to still be home with E if the need is there.

Month 4 Launch.  Goal would be to by month 4 to have everything close to being able to launch the Adams family back to life. We’ll re examine during this month where they are and what their needs are.

After mapping out what the next four months look like. The Adams’ Family are at a $2,000/ month deficit. If we can rally around them from now until October, I believe we can help offset this deficit. 

Will you pray about pledging to donate each month? All we would need is 20 people promising to do four $100 donations to accomplish our goal.  If this, or any donation is something that you would be willing to do, simply follow the donating directions on the blog.  Then, would you please email me at ethanadamsblog@gmail.com with your pledge so I can keep track of our giving and to send you a reminder each of the next four months.

Thank you for continuing to walk this journey with Ethan and his family.  This wouldn’t be possible without each and every member of Team Adams.


-Meagan

update

Scans came back clear! he was so dehydrated from throwing up that they are giving him iv fluids.  It, along with a new antibiotic, have helped to make him feel better.  He is eating for the first time in 4 day.  Thank you all for your quick response to prayer.  More updates soon.

Meagan

Please Pray!

Hey all! Please pray!
Today, Ethan will be getting a brain scan.  He has been extremely dizzy and the antibiotics that he's on isn't even touching the sinus/ear infections.  Hoping to get some answers.  Will update when there's more information!
Thanks!

Meagan

Where we are...

We are two weeks into recovery and Ethan is doing well. He has taken several walks around the neighborhood and is taking fewer naps. His energy is making a slow, but steady comeback. Ethan also finished up another class for his freshman year. He took his test via face chat. This has been very helpful for him to be able to answer his question directly with the teacher. Drew and I will be helping Ethan with his summer classes to try to get him caught up as much as possible.


 Ethan's eyes are about the same and we haven't seen any improvement as of yet. We are still waiting for his brain to heal. Ethan is in good spirits and has made goals on some days to try and motivate himself to keep busy. He made banana bread, walked 2 miles, and he clipped his finger nails and toenails all in one day. I called him from work to check in on him and he was excited to report he clipped his nails, with Ethan's eyes still seeing double, he has to really concentrate to clip his nails this then makes him tired. Needless to say the next day he was not as energetic and did take a long nap he is learning how to pace himself in his activities.

As the family is adjusting to the new recovery schedule we will finish up school with Chas, and Tabitha and I are both finishing up our finals. Also, Drew and I are working part time, while one is working the other helps Ethan with his classes online. He still needs us to type and read for him, so this will be our summer.


I am trying to stay positive about summer school!:)


 It is going to be important for us to stay at this schedule for Ethan's recovery, throughout this cancer fight Ethan needed us next to him walking every moment with him, even though he is gaining some independence now it is still vital that we finish strong at Ethan's side during this recovery and summer school.

I am very thankful that Drew and I have been able to work our schedules to be able to put Ethan's needs as a priority. This brings me to you, our supporters. It is because of your giving hearts that we have been able to walk through this journey with Ethan like we have. Emotion takes over for me when my thoughts turn to the so many that have prayed, given, encouraged, and loved on us all through out an incredible journey of fighting cancer.

We thank you for making this possible!

Lakeshore church is continuing to help us with the donations and the donations that we have received thus far have helped with the monthly bills and extra expense it took to get treatment.

The last two weeks have been interesting. In fact, I am grateful that treatment is over and yet in awe a bit how we made it through such a  journey. I have no doubt that God's strength carried me through.
As Ethan's Mom, I counted a privilege to be able to pray over Ethan and love him through every painful treatment to every milestone victory. I have had many heartbreaking moments of seeing suffering and pain in our son, but even though I saw this and we pushed through, I know that my Savior was present; for Jesus is near to the broken hearted, and as a mamma I have had many brokenhearted moments of surrendering the destiny of our son to God's will.

As Drew and I work out the details of our lives with school plans,  jobs, we ask that God would give us the same strength and courage to carry out the recovery plans, and the exit strategy for Ethan as he turns from cancer fighter  to cancer survivor.

The FINAL day!!

Today is the final day of radiation. This is a significant point as we continue on to the next part of this expedition. We will be celebrating by going out to The Olive Garden tonight. It will be mid June before we know whether the cancer is in remission (MRI and port removal) and have the joy of setting that as a major milestone.

Spirits are good and as I walked through the oncology clinic today. It is surreal to see others in different places in the journey.  Mothers or fathers asleep while kids in masks watch TV or others where mom and dad are able to both be here. Kids from infants to teenagers, all different walks of life, beliefs, and financial status. It seems to be one of the few things that crosses all barriers and is not influenced by anything.  The one constant trait that is seen everywhere is tiredness. As I told one of the nurses that today was our last radiation treatments she responded with, " oh that is the reasons for the smiles."  They are not a common here. I now have true empathy for these folks and remember how we have been supported from all of you and from organizations for which we are extremely grateful. I am also grateful for a mind that is quick to look ahead and remind myself that we are only 2\3 done and we must remain vigilant.

Ethan's sight is the same which is actually good news. We were expecting a decline, but it appears that there was just a pause in improving. The sight is not an eye problem but an issue with neurons in the optical tract and the brain is trying to repair itself and this is why no glasses or other measures are being taken at this point. The eyes are good so if we adjust what he sees the brain will not think there is a need to repair and it won't. This begs the question of how long do wait to see if it will repair? Right now we wait till we know cancer is in remission and he has recovered from radiation which is approximately 2 months.

He now has hair that is 1\8 inch long on the top of his head (like a toupee), the back of his neck, (so he has a bald ring where most men don't go bald) face, and his eyebrows are back (started by the nose and worked their way out).

He is still napping everyday for 3 or 4 hours and walking 4 blocks wears him out. The say after 2 weeks he will see significant improvement with the fatigue. He still vacuums or does the dishes so it is not as if he is laying around.

The nausea..... This just won't go away! We take Zophran for this and it is on an “as needed” basis but to date we take it every 4 hours religiously. He can feel it wearing off and then takes 2 zantac and a benadryl every night to sleep.

Speaking of sleep his dream have been frequent and very vivid! As in every morning we hear of one or two in detail. Lol he even dreams of dreaming. For all those out there that like to interpret dreams he keeps losing his teeth. Lol should be fun to hear back on that from those that don't as well. Haha

Over the next 2 months we move from cancer patient to survivor. This will be interesting to see how we all have adjusted and what will be different going forward through the final leg. It is actually more overwhelming to me than the tumor.

2 weeks left!!

Four weeks down and two weeks to go!

We are encouraged that we only have two more weeks of radiation to go. Ethan has had his nausea and fatigue like normal, but we are now getting a smaller dose of radiation.The Doctor told Ethan this week that hopefully in one week he should start to feel a bit better. We welcome news of feeling better! :)

Ethan had another full day of doctor visits and lab work on Friday, the 11th. It seems to get harder to get through these long days of getting poked with needles and having all those eye tests done, but Ethan took it like a champ.

Ethan and I listened to some of our favorite comedians on our way over to the city to see the doctor, this gives us good material for joking and laughing to get through the day!! One of our favorites this week was Brian Regan and the pirates. If you need a good laugh look it up, nothing better then laughing. The Joy of the Lord is our strength!!

Ethan's eye tests were 3 hours long this week.The Doctor still sees improvement and no swelling, but had a little eye muscle slowing down which he said can be from radiation. We continue to wait for complete healing of Ethan's eyes.

We all seem to be treatment weary, but are taking life one day at a time. We will continue to help Ethan with his classes. Chas will be having an open house for his Jr. High school for next year. Tabitha will finish her sophomore year in college in just a few weeks. Spring has arrived and along with warm weather we have 5 new kitties that we have enjoyed watching. They are 4 weeks old and a delight to have for awhile.

Thank you for all the prayers and support through out this long journey. We had several meals delivered to us this  last few weeks and I was very grateful for our neighbor helping me with our lawn these small acts of kindness bring me to tears of gratefulness. Thank you !!!

The start of week 3

Our day begins with the journey into the city for radiation.  10:30 every morning, Monday-Friday.

 This week when Friday rolled around we felt the tired feeling that we know well these days. Ethan has finished two weeks of radiation and this week the side effect that has been felt is fatigue. He gets tired quickly and needs to sleep.

 Ethan is also experiencing his eyebrows and eyelashes falling out which is another side effect. Between weeks 3 and 4 Ethan will be experience a sunburn around his head and all this can last for 4 to 6 weeks after he is finished with his radiation treatment.
Some other side effects will be his hair will not grow back very quickly where the radiation is being pointed at on his head, so Dr. Velez gave Ethan some advice on growing his hair long on top so that it will cover the other spots. We had a good laugh!

 Every Thursday and Friday, we check in with both doctors and on Fridays we get labs done. This week Ethan's numbers were good. We still need to be prepared if his hemoglobin drops below 10 we will need another blood transfusion, but again very grateful that this was not needed this week.

We were visiting with Dr. Velez and she started to talk to Ethan about the next few months 4 more weeks of radiation, then 4 to 6 weeks recovery then we will do an MRI and if all looks good than Ethan will be scheduled to get his port out. Time frame for this looks like the end of June.

I found myself holding my breath as it was a surreal moment that we were talking about the end or should I say the end of this part of Ethan's journey.

 Drew and I have been talking about what the end could look like for Ethan and that it will be an adjustment for all of us yet again to find another new normal because this cancer journey has changed us all we will never be the same. I echo Tabi's statements of not wanting a ticket out, but oh how I long for no more suffering and no more pain and yet these two human feelings make me run into my Savior's arms every day. I am grateful to be carried by my Savior at the same time having the strength when I have needed it to care, encourage, and love each other throughout these past few months.
The love and encouragement from so many of you has been humbling and honestly hard to take sometimes. We are thankful for you all and thank you for all the love and support!

Radiation

The radiation has begun! We had our first apt yesterday. Ethan and I headed off to Tuoro Hospital for the treatment. They partner with Children’s Hospital seeing as the radiation machine is approx. $4 million.

Ethan has been doing well over the last couple of weeks- just knowing the Chemo is done has been a huge morale booster. I have watched and seen his strength return these weeks and I can no longer take it easy when we rough house and when he punches me in the arm it hurts again.   We have had a couple of days where he has not even napped. One day he ran around with me, which included getting plats for the garden and materials at Lowes for a job. Later that night his ankles hurt just from walking so much. There will definitely be a considerable time of recovery and rebuilding when this is over. This past week he has commented a number of times that his eyes seem better as well, so I drug him out to the ball field to make him try and hit a golf ball. With one eye closed he nailed it with the second swing. 

The family spirits are better for the moment, he spent a 2 evenings/ nights with his friends and this was a huge boost and even played some video games for a few hours. Beth is done with Mid-terms, Chas has had more direct attention, and Tabi and I went backpacking for 2 nights.

Last Friday, Ethan and I went in for a number of tests to check over things now that Chemo is done and they all looked good. The only thing to note was lower thyroid function. (.03 lower to .76)  This is not a surprise but it is directly related to hormones which have their control center located in the third ventricle close to where the tumor was located, and will be the focus of the radiation It will be watched as we continue. With this information we got the ok to start Radiation. The treatment actually only takes about 7 minutes but Thursday’s and Friday’s will be the longer days due to Doctor visits. Ethan lays down on the bed (see Picture) and the machine moves around his head shooting the radiation form many directions but it all ends up in the middle ventricle. The many angles of radiation keep the radiation in surrounding areas low and high in the middle where they all meet. Ethan asked me, “what happens if the aim at the wrong spot?” that should give you a bit of where his head is.

The night before we went in he asked me to stay in his room for a bit longer just to be present he said “ I don’t want the day to end.” It is very hard starting this knowing the side effects that are coming especially after feeling so well for a few weeks. But we have started and we laughed a good bit all the way through day one. And day 2 Beth and Ethan had a flat after radiation but they got it taken care of.  They say it will be about 2 weeks before he feels the fatigue, so we are going to make the best of it. This week the schedule is different times but after that it will be every day at 1030 AM

Want to say a special thanks to those that have given both in moral support and finical support. After the time spent in missions I did not expect the response we got. Thanks so much it is greatly appreciated and slightly over whelming.

Up and Going

The new directions are up and going for donations!

Simply click on the "Donate" button and away your go!

Thank you for your patience while everything was updated!

Donation directions

Hey All!

Just wanted you to know that the lakeshore church has updated their website and i'm working on updating our blog as well with how to donate.  Should be updated ASAP!
I'll post again when the directions are updated.

Thanks for your patience!

Happy Mardi Gra!!!

Today is Fat Tuesday a New Orleans tradition for Mardi Gra parades. The parades are going all day throughout the city with lots of people celebrating.

The Adams family normally would not attempt a trip to the city on a day like this- traffic and people make for slow moving, but Ethan's need for a blood transfusion took priority today.

We packed our snacks and books and will be in the hospital for the day to receive his blood transfusion.

The nurse has mentioned to me this morning that it is highly unusual for a cancer patient to not have a blood transfusion throughout chemo treatment. (Ethan will be getting his first blood transfusion today.) This is another reminder that God is with Ethan and has brought him through!!! Thank you Jesus for your faithfulness!!

As Ethan gets his blood today we are very thankful for the many that have given blood on his behalf... Thank you!!:)

Resting in Jesus peace and love today!
Thank you for the prayers of strength and courage!!!

Dr. Chas making his brother laugh :)

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.

‘

A Ticket Out

That video of Ethan's tumor is a pretty incredible sight to see. It takes a person's breath away.  Several people have told me that they have found themselves holding their breath, gripping the edge of their seats as they watched the miracle of the tumor being pulled out... "its' a miracle" everybody keeps saying.  A miracle right before our eyes.

Now don't get me wrong, the sight of Gandolf leaving the building is amazing.  But I have gotten to see a greater miracle, one that is even more breathtaking.  I have gotten the privilege to see a young boy show courage, love and peace of a man three times his age.  I have gotten to see a kid who had every right to be unhappy and angry, but instead choose to embrace the peace of his Father and to have an attitude of joy and compassion for the people around him. Now THAT is a miracle that has taken my breath away.

I read a blog today that talked about wanting to have a ticket out. The idea was that there are moments in a person's life where our heart shatters because of pain and fear.  The author contiutes to talk about how are hearts are like jars of clay and in those moments of shattering whatever we have put into those jars will come out.

"But we have this treasure in jars of clay to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but NOT crushed; perplexed, but not driven to despair; persecuted, but not forsaken: struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our morals bodies," 2 Corinthians 4:7-10

At the beginning of this journey, I prayed that God would take this challenge from us, that he would give us a ticket out.  People all over the world were joining us in praying for healing and I struggled because I didn't see that healing happen. E still had Cancer and I feared it would break my family.

Now, I am so thankful he didn't give a ticket out.

I never would have experienced this kind of healing that God has shown my family, and I would have missed out on seeing the greatest miracle that has come through Ethan and the attitude he has chosen to have.

A look at the Tumor Removal

From Meagan:

Following Ethan's surgery, Ethan and his family shared an incredible gift.  We were given a two minute and 18 second video of the miracle that was the removal of the tumor.

 The first time I watched this video, it felt like time stood still.  I realized I was holding my breath as I watched the meticulous hands of the surgeon try and extract "Gandolf."  I cheered out loud when I saw that tumor leave his brain.  How GREAT is our God!

And now, nearly two months after surgery, Here is the video shared with you!

(Just a warning- it is brain surgery, so it is graphic.  But VERY Miraculous!)

 

 

The Start of 2014

From Beth:

Happy New Year!!!
As we ended the 2013 year, we are grateful for the struggles and the triumphs that were in our life as a family. As I think about the year, I see growth and strength in each of us, a redefining of normal which brings freedom.  Through this adventure, we all have embraced the joy and the tears that come with the journey of a loved one with cancer. As we move forward through 2014, we are hoping for a healthy, happy year!

We had a very blessed Christmas and new year!! Many people gave us gifts and meals over the break we are so thankful!! The break was restful and we had some great family time. It is always a delight to have Tabitha home from college being all together is a gift in itself.

We went to the Melting Pot for Christmas Eve

Ethan finished his cycle b chemo on the 14th. This was the hardest chemo yet. He struggled with nausea and took more meds to help him be able to sleep. He is still healing from brain surgery and gets discouraged easily with his vision. We continue to push and try to do as much school as he can handle. I am his personal secretary ( I am learning a lot and loving world geography :))

 Eye Doctor Visit

 We Love our "E"!

 Still Smiling!

Our sweet Chas fractured his elbow two weeks ago, (fell off the loft in his room) so he has a cast on the arm. He is doing good- even playing euphonium  with his cast!:) We will be celebrating Chas's birthday on the 23rd and he will be 12 yrs. old!

We celebrated Tabi's birthday!

We are still on chemo schedule and the 29th we start off with MRI to see how Ethan's brain is doing. This chemo round will be Ethan's last cycle A.


We are very grateful for all the gifts, encouragement and prayers! Thank you !!!