Our hearts are smiling so big today....we've received the best news we've gotten in quite awhile. On Monday, Jordon had his CT scan that is done one year after the end of last treatment. This is the scan that hasn't ever come back cancer free for him. So, needless to say, we were all on pins and needles for this one. However, we received the news today that his scan had no signs of cancer and he is officially in remission!!!! Finally... a clean scan. He is doing great- going to college, playing soccer for the community college and a men's league and he also just passed his exam for his pharmacy technician certificate. We are so happy that he doesn't have to be weighed down by this again.

Thank you all so much for your well wishes and prayers while we awaited the results!!!

So first and foremost....HE DID IT!!! He graduated- yeah!!! Congrats Jordon- we are very proud of you. Last week concluded his three weeks of radiation. All in all, he did awesome. It made him very tired and a little nauseas at times but for the most part he was a trooper. Now it's back to monthly bloodwork and frequent scans. Of course we all pray that he won't ever have to go down this road again.

The golf tournament a couple weeks ago had a great turnout. Thank you so much to Brian, Mark and all of our friends and family who either attended or lent a helping hand. We are so blessed to be surrounded by so many wonderful people.

Hello all! So Jordon has officially finished his first week of radiation. All in all it went really well. He was having a lot of anxiety about it so it took us awhile to get him in but once it started it went well. He is very tired and somewhat nauseous after treatments but is otherwise doing great. Only two more weeks.

Today is his charity golf tournament and we hope to have a great turnout. Thank you so much to Brian and Mark for all your organizational efforts to make it happen. We'll let everyone know how it goes!

Radiation Started

Well first, our continued thanks to all for the love, prayers and support for Jordon and our family.

After many delays and X-rays, Ct's, etc... Jordon finally started his radiation yesterday afternoon. We are about a month behind starting, but none the less we have started.

He will go everyday after school for three weeks, enduring 30 minute sessions. He should be done the week before Graduation :)

He can already feel a difference from the fist visit. He is nauseous and tired, I am sure it will get worse from hear.

Just wanted to give the latest update.

Thanks again and hope fully see many of you at the golf tournament this coming Tuesday.

www.jordonfight.eventbrite.com

The Perry clan

Hello all...a quick update to let you all know that Jordon will actually start radiation tomorrow. He was supposed to start on Monday but they were not completely ready with his plan. He also had a CT scan of his chest done to be sure that there weren't any signs of cancer in his lungs. The scan came back clean so all is well on that end and he will continue with radiation for 3 weeks as planned. We will keep everyone posted on how it all goes.

Yesterday Jordon met with the radiation oncologist to have a CT scan done to determine exactly where they need to radiate. He received his "tattoos" for his radiation markers and will begin treatment on Monday the 19th. He will receive radiation Monday thru Friday, 20 minutes a day, for 3 weeks. He had bloodwork done on April 1st and his markers were all within normal range.

He just got back from a trip to California with one of his classes in school. They went to the beach, Disneyland and the aquarium. He had a great time and felt great. Now he just needs to focus on school for the next month so he can graduate and move on to the next chapter in his life.

We apologize for the length of time since our last update but we have been trying to get all our ducks in a row before we get too much information out there. We have received a second opinion from an adult oncologist just to be sure that Jordon's choice of not doing chemotherapy is ok. We also met with the radiation oncologist last Friday who gave us a lot of great information as well.

Jordon's tumor is what is known as a mixed germ cell tumor. Pure tumors, ones that are not of mixed cancer cells, are much easier to treat than mixed tumors. Mixed germ cell tumors are usually highly sensitive to chemotherapy which is why we did chemotherapy with the last reoccurance. Some cancers are more sensitive to chemo while others are more sensitive to radiation which is why all cancers are treated differently. That being said, Jordon's cancer responded to chemo but was obviously not completely erradicated it. So, there is a good chance that it may be radiation sensitive. Although, the general opinion is that Jordon should do chemo, the adult oncologist we met with today is ok with Jordon only doing radiation therapy for now. I could give so much more detail of things we have learned in the past week but I will keep it simple. We just want everyone to know that, in light of all the recent information we have received, we are behind Jordon in his decision to forego chemo right now and just do radiation.

He will possibly start radiation on Wednesday, April 7th. He will go in this day for them to go over scans to determine the exact location the radiation will be given. If he chooses, he can start the same day. He has a trip to CA with class he is hoping to get clearance to go on so if that happens he will start radiation on Monday the 12th. The exact length of time has yet to be determined but somehwere in the range of 3-4 weeks, Monday thru Friday for about 20 minutes at at time. They say it will feel like a bad sunburn and the biggest risk is small bowel obstruction due to the scar tissue.

Jordon is feeling great and has been in wonderful spirits. He was back to school last week and all caught up from the short time he missed. Once again, thank you to all for the support and prayers and we will let you know how it goes.

He's home!!!! He's sore and tired but home.

He was cleared to eat Weds morning. If all went well with that, then he would be sent home on Thursday!! Which is exactly what happened.Thank God :)

We will meet with oncologist in a couple weeks to decide what the treatment plan will be. We will keep everyone updated. Thank you to everyone for all the love, support, prayers, cards, balloons, cookie bouquets, etc.

Yesterday was a good day for Jordon. He coerced the surgeon into taking his NG tube out. The surgeon was reluctant after the issues he had the day before but decided to give it a try. Jordon had the biggest smile on his face we've seen yet. He marched his IV pole straight into the bathroom and had that tube out on his own before the surgeon was done in the room. He hopped in the shower and was a whole new person after that. He was by far in the best spirits he's been in yet. He was able to start on clear liquids last night and hopefully will start on a regular diet today.

The oncologist came to see us yesterday and the final results show that the cancer cells were only in the one lymph node- no other nodes were affected. However, he is concerned that Jordon's cancer has not gone "by the book." His chances of relapse should have been less than 10% both times prior and yet it has still come back. He is concerned that his cancer is aggressive and therefore he wants to be aggressive with treatment as well this time. His concern is that if it comes back it will likely come back in his lungs or brain and at that point it can be fatal. So he wants Jordon to do both radiation and some very aggressive chemotherapy. This was a lot to digest and Jordon is not looking forward to chemo. We don't blame him but we also don't want to mess around with his life. We love him and need him to be around as long as possible.

These has been some talk of doing a PET scan.A PET scan can help physicians effectively pinpoint the source of cancer. This is possible because many cancer cells are highly metabolic and therefore synthesize the radioactive glucose (sugar) that is injected in the patient prior to the exam. The areas of high glucose uptake are dramatically displayed in the scan imagery, as opposed to the anatomical imagery of CT or MRI, which cannot detect active, viable tumor. A PET scan can be used in early diagnosis, assisting physicians in determining the best method for treatment. A whole body PET scan may detect whether cancer is isolated to one specific area or has spread to other organs before a treatment path is determined. This will allow them to possibly see any other active cancer growth that may not yet be detectable on a regular CT scan.

The plan is to go home tomorrow if all goes well. YEAH!!!!!!!

Yesterday was not such a good day. They took his epidural and catheter out which was great-a few less tubes. However, mid-morning he was complaining of some flank pain and within about 30 minutes his entire abdomen and lower back were completely bloated and hard. They did an xray to check placement of his NG tube and to make sure that it was only air accumulating in his abdomen. His tube had moved a bit but was still in correct placement and indeed his abdomen was full of trapped air. He was miserable with pain being a 12 out of 10. They had a difficult time getting his pain under control. He did a lot of walking though to try and get things moving.

Today has started off much better. He has had two bowel movements so they have turned off the suction to his NG tube to see if he can tolerate it. He is now allowed to have ice chips so we'll see how today goes. He is so hungry and so ready to get the NG tube out!

So, I haven't had the laptop with me at the hospital since Thursday so I will give the update from the last few days.

Thursday night went OK for him once they got the epidural working. Friday morning we were able to get him out of bed and into a chair for about an hour. He was exhausted after that and slept the rest of the morning. He was needing morphine for breakthrough pain on Friday and Benedryl to stop the itching that morphine can cause so needless to say he slept most of his day away. Friday night was a very sleepless night. The PICU really isn't the quietest place. Between all the monitors, leg compressors, IV pumps, catheter, NG tube suction and noisy nurses, neither of us got much sleep. He is soooo tired of all the wires and the NG tube. Can't blame him. He was struggling a little Friday night with the morphine as it was making his respirations about 7 per minute (too low) and his oxygen sats about 75%- EEK! So, he now sleeps with some oxygen at night as his sats when he sleeps, even off morphine, are dipping into the low 80's.

Saturday he wanted to get out of his room. He wanted to walk but they were trying to adjust his epidural so that he wouldn't need to use the morphine and his whole right side went numb. We managed to get him into a wheelchair and we took him outside for about 30 minutes. Later that day he got up and walked a lap around the unit. It hurt and was difficult for him but he is determined to pass some gas so he can get the NG tube out. He is still having quite a bit of output from it so it may be another couple days. He won't be allowed to even have ice chips until he passes gas. He is so hungry and thirsty. We also left the PICU on Saturday and moved back up to the oncology floor. It's nice to see some familiar faces up there. One of his nurses knew who he was right away. They really are wonderful on that floor and love caring for the kids.

He (we) slept great Saturday night and this morning he was rearing to go. He wanted out of bed and wanted to walk. He was able to get out of bed by himself which he hasn't been able to do up until today. His only question to the doctors has been "when do I get this tube out of my nose?"
So....still waiting for him to fart! Who would've thought we'd all be so anxiously awaiting some flatulence? He walked around the unit and did great! His incision site looks great and has been fever free. He has been so strong and so determined. He is doing awesome! We are very proud of him.

We spoke with the oncologist and the preliminary results show that the cancer cells are so far only in the one lymph node. If this remains true for the final results then he will only need radiation. We don't know the exact schedule but it sounds like it will be for 20 min a day for 2 weeks. He said it would only be in the area where the tumor was and would feel like a bad sunburn. He may have some diarrhea during radiation and some pelvic pain caused from scar tissue pulling on his pelvic muscles.

Many of his wonderful friends have been filtering in all day, everyday. They have brought many cards, letters, posters, stuffed animals, balloons, food, etc. You guys have been awesome and he is stronger knowing you are all behind him. To our family and friends, thank you for your love, prayers and support. We are so thankful to have such great people in our lives. Pray for some flatulence! :)

Brooke XOXOXO

Jordon went into surgery right on time this morning and it took about 3 hours. The tumor was expected to be about 2.7cm but ended up being about 4cm x 3.5cm. (about the size of a golf ball) So it was either larger than expected from the scan or it had grown since the January CT. Due to this, they decided to not only remove the lymph nodes on the right side but the left side nodes as well. They also removed his appendix while they were already in there. If he were to end up needing an appendectomy later in life it would be a more difficult surgery due to scar tissue from this surgery so they thought they would save him the hassle later.

He opted for the epidural for pain control so at the moment he is feeling much better. He was pretty uncomfortable after surgery. He is in the PICU for the next few days or until he is a little more stable. He had very little blood loss during surgery and did well but since he has the epidural, a catheter and an NG tube they wanted him in ICU.

They sent a frozen section of the tumor while in surgery and it did come back as live tumor/ cancer. We won't know if has spread any further until pathology comes back in a few days. The surgeon spoke with oncologist this morning and he did not want to put the port in after all because they are talking about doing radiation instead of chemotherapy. We really don't know much more than that as far as treatment but we will be sure to keep everyone posted.

Thanks again for all the support and prayers. He is a lucky young man to have so many that love him.

Surgery is scheduled for March 4th at 9am. This is a little longer than we thought but this gives him more time to just be a teenager and enjoy his friends.

Thanks again to all for the prayers and support.

We took Jordon in for a CT scan in mid-January and last Monday we received the call we didn't expect. They suspect his cancer is back. The lymph node in his abdomen where the germ cell tumor was previously is now measuring 2.7cm. It was 4cm last time but they worry anytime it is over 2cm and it shouldn't even be visible on the scan. It is common for it to come back in the same node. He will have surgery next week to remove the affected node as well as strip the nodes in the same path on that right side. He will be in the hospital for about 5 days and a 6-8 week recovery as the surgery is invasive and not laproscopic this time. They will send the nodes to pathology to confirm but will do a frozen section of the affected node to tell immediately whether or not it is viable tumor. If so, they will also place his port for chemo while he is alreayd under anesthesia. We will then have to meet with his oncologist to discuss chemo but we imagine they will want to give him a little time to heal before they deplete all his immunity.

We will have an exact surgery date by tomorrow and we will keep you all posted. Thank you all in advance for your prayers and support. We are blessed to be surrounded by such wonderful friends and family.

Don & Brooke

All-

Again a huge THANK YOU for the support, love, and prayers. I couldn't have made it through with out them.

Recently, I would like to especially thank Rob Messer and the Gilbert Arsenal Soccer Club for their support, fundraising, and dedication of the Aresenal Challenge Soccer Tournment. Wow, I wasn't expecting that one!! Thanks so much.

I am finally getting back to a somewhat normal teenage life. My hair is almost completely back and noticeably lighter?

Again, thanks so much for everything.

Peace and blessing,

Jordon

I Belive ...

A Birth Certificate shows that we were born. A Death Certificate shows that we died. Pictures show that we lived!

Have a seat . . . Relax . . . And read this slowly.

I Believe.... That just because two people argue, doesn't mean they don't love each other. And just because they don't argue, doesn't mean they do love each other.

I Believe....That we don't have to change friends if we understand that friends change.

I Believe...That no matter how good a friend is, they're going to hurt you every once in a while and you must forgive them for that.

I Believe....That true friendship continues to grow, even over the longest distance. Same goes for true love.

I Believe... That you can do something in an instant that will give you heartache for life.

I Believe....That you should always leave loved ones with loving words. It may be the last time you see them.

I Believe.... That you can keep going long after you think you can't. I

Believe...That we are responsible for what we do, no matter how we feel.

I Believe....That either you control your attitude or it controls you.

I Believe....That heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.

I Believe....That money is a lousy way of keeping score.

I Believe...That my best friend and I can do anything, or nothing, and have the best time.

I Believe...That sometimes the people you expect to kick you when you're down, will be the ones to help you get back up.

I Believe....That sometimes when I'm angry I have the right to be angry, but that doesn't give me the right to be cruel.

I Believe...That maturity has more to do with what types of experiences you've had, and what you've learned from them.....and less to do with how many birthdays you've celebrated.

I Believe...That it isn't always enough to be forgiven by others. Sometimes, you have to learn to forgive yourself.

I Believe....That no matter how bad your heart is broken the world doesn't stop for your grief.

I Believe...That our background and circumstances may have influenced who we are, but we are responsible for who we become.

I Believe....That you shouldn't be so eager to find out a secret. It could change your life Forever.

I Believe...Two people can look at the exact same thing and see something totally different.

I Believe....That your life can be changed in a matter of hours by people who don't even know you.

I Believe....That even when you think you have no more to give, if a friend cries out to you.......you will find the strength to help.

I Believe....That credentials on the wall do not make you a decent human being.

I Believe....That the people you care about most in life are taken from you too soon.

The happiest of people don't necessarily have the best of everything; They just make the most of everything.

Thank you God for all the wonderful people who help us throughout the journey of life..

Good news... REMISSION

All-

Again, thanks for the continued support and prayers!
Today we received the best news this year... Jordon is in remission and will not have to do the additional three rounds of chemo. Thank God

We found out that the chemo actually stays in his body for up to five years and helps continue fighting any cancerous cells. So that's a good thing.

He will still have some side effects from the chemo, but the tumor and blood markers are where they need to be!! Yeah...

We will have to wait and see over the next year or two if he is sterile or will be able to have children without in-vitro. So please pray for that now.

We are all relieved and Jordon can't wait for his hair to grow back. :)
He is working on getting his over all strength back, his legs and lungs for soccer, and his weight. It will just take time and hard work.

Next month the Dr. will go over his monitoring schedule for the next five years. He still has to do CT's (cat scans) and blood work to make sure it is kept in check.

Love and blessings to all,

The Perry's

On Monday Jordon went in for some bloodwork and a CT scan. His bloodwork looked great and his white blood cell count was actually on the high side. This is thanks to the Neupogen shot we give him after his chemo. His nurse practitioner did a head to toe exam that includes testing his strength. Jordon has managed to lose close to 20 pounds through all of this but is starting to come back from that. He also lost a lot of his strength due to his lack of being able to do much of anything. She said he has improved quite a bit over the past couple weeks and he has been trying to go to the gym and get back into shape.

We meet with the oncologist on January 5th to receive results of the CT scan and hopefully hear news that he is in remission. If so, then he will have his port removed the following week. He will then be back on the schedule of monthly monitoring.

He is still bald and pale but feeling much better. He was able to go back to school for finals week and sit on the bench with his teammates for two varsity games. He was cleared to play so he will go out for his first varsity game this year on December 29th. He can't wait!

So God willing he will be in remission and on his way back to some normalcy!

SFGTD (something for God to do) box...

Date: TODAY
From: GOD
Subject: YOURSELF
Reference: LIFE

This is God. Today I will be handling ALL of your problems for you. I do Not need your help. So, have a nice day. Also, remember that I love you.

P.S. And, remember...

If life happens to deliver a situation to you that you cannot handle, DO NOT attempt to resolve it yourself!

Kindly put it in the SFGTD (something for God to do) box.

I will get to it in MY TIME. All situations will be resolved, but in My time, not yours.

Once the matter is placed into the box, do not hold onto it by worrying about it.

Instead, focus on all the wonderful things that are present in your life now. Should you decide to send this to a friend; Thank you.

You may have touched their life in ways you will never know! Now, you have a nice day.

Always,

God


God has seen you struggling, God says it's over. A blessing is coming your way.

Done with third and final round of chemo... Hopefully!!

Hello all-

I apologize for the lag in updates... thanks for the patience and continued support.

It has been a busy last couple of weeks!! Jordon was up and down the week of Thanksgiving. Just general overall feeling blah and a slight fever. Which was a bit of a concern temporarily. He made it through and then off to the next, and hopefully final round.

So Jordon went in to the Oncologist office with Brooke on Thursday the 4th to get his blood work done to check his counts. They were good enough for him to be admitted the same day to start his final round. Which is how it usually works on the third week in between rounds.

Anyway, he was admitted on Thursday and then usually the first day they get him hydrated properly. Once that is done they are able to start his rounds of chemo. He gets his chemo dripped in slowly over about a four to five hour period.

Then they give a ton of fluids via his port over the next 18 to 20 hours before the next dose of chemo, and so on each day. As well as any anti nausea meds through out the day. Chemo is administered every 24 hours over three to four days every three weeks roughly.

So he was/is very run down and just plain old tired from the chemo and meds. Not to mention just being in a hospital for multiple days on end... Poor guy!!

He has been a champion through the whole thing. He has really only complained about the bone pain after his rounds of chemo. He has said many a time that, "chemo really sucks"... I think it has been much harder on him then he lets on.

He is behind in school and is/has been working at getting caught up. He is planning on getting back into the swing of things ASAP. He has finals this and next week, then he will be on winter break for two weeks.

We are all hoping that his life will become more normal with school, soccer, and socially after the break.

When he returns from winter break, he should be stabilizing and become much more normal in his daily life... We will know by then if the tumor has shrunk or is gone and if his tumor markers are normal again.

God willing, he will only have to endure this one round he just completed.

So far he has only lost about 12 to 15 lbs, even though his appetite has been pretty good. He has lost that beautiful head of hair as well. (but that will come back soon)

His High School Soccer team , coach and families have been awesome in their support. As well as the school and all his teachers and students at Mesquite.

There are so many people, groups, individuals to thank during this whole experience. The support and prayers, and donations have been very much appreciated and needed. You all know who you are and we can't thank you enough.

I ask that you keep us all in your prayers. We will keep Fighting On and helping Jordon beat his cancer into remission.

We will do a better job on the updates as well. So the next post will hopefully be nothing but good news...

Blessings to all,

The Perry's