1 more Christmas Present

I hope everyone had a wonderful christmas full of lots of family time.  Ours didn’t have enough family time but we thoroughly enjoyed the time we did have!  We were truely blessed this christmas.  We had lots of help from a few people we knew and lots of help from a few people we didn’t–without this help I’m not sure how Santa would have made it to our house!  This coming up week will be full of doctors appointments again!  We have a followup with the brain surgeon on Wednesday and a followup with Dr. Schertz on Friday which we are very excited for!

So we have 1 more christmas present for everyone.  Last Friday Josh had his lab work done for his tumor markers but it takes the cancer center 5 days to get the results.  I called to see if they had them back on Christmas eve and they did………………..his tumor marker was a 9 after surgery but that was still too high.  Dr. Schertz said a normal was 6.  Last Friday when they were taken the level was 3.9–which is WONDERFUL news!  That was our best christmas present ever!  There were times this year that I thought that Josh wouldn’t be here to celebrate christmas with us this year and there were times that I thought that maybe he would be here but Santa wouldn’t be able to come…neither were the case!  Josh was here and Santa came to our house to see Kobie…it was wonderful!

Has everyone read in the news that Lance Armstrong’s girlfriend is pregnant?  Well..she is and she is due in June.  Yes, he did store his sperm before undergoing chemo which Josh was not given the option to do BUT this child was conceived naturally…so…maybe one day Josh and I will be able to have more kids.

I’m ending by saying…no matter how bad things are they would always be worse so be thankful for what you have!



Merry Christmas everyone
Merry Christmas

Hey everyone! It’s that time of year again. I am writing this blog entry today because I know that a lot of you only have Internet access at work, and a lot of people are off the entire week next week, so I wanted to be sure to get this to you prior to Christmas!

This year has been a great year for some people, and the worst year for others. Despite how your year has been, I want you to end it with one thought in mind. No matter how crappy your situation is, it could be worse. No matter how joyous your situation is, it could be better. When you’re around people that you know, or don’t know, and you really dislike what they’re doing, saying, etc. Step back for a moment and think about what that person might be going through, has been through, or is about to go through.

For those of you traveling this Christmas, please be extra careful while doing so, to ensure you’re able to celebrate many more Christmas’ with your family and friends. For everyone, be thankful for what you have this Christmas. You never know, it might not be here next Christmas.

That being said, I want to wish everyone a very Merry Christmas, and a Happy New Year! I hope Santa is good to everyone, and everyone is able to be with the ones that they love this year, and continue on through 2009. LiveStrong!

+j



Priceless

The cost of a brain surgeon: $10,000

The cost of the brain surgery: $50,000

Getting to see the look on Josh’s face as Zoe rubs his head just 1-1/2 weeks after brain surgery….priceless!



Todays Results

Today has good a nice day so far.  We went out to breakfast and to Sams to get a few essentials.  After that we came home and some friends came to finish taking out Joshs remaining sutures..it was only like 1 or 2.  Yes, I could have done this but he is such a baby I prefer not to do it because he complains.

Now…since I know the anticipation is killing you…the results.  The tumors are still shrinking.  As long as nothing changes the next CT will be in 2 months.  No radiation–Indiana University does not suggest it since there was just 1 lesion on the brain.  If anymore lesions pop up they will do surgery to remove it then radiation.  Here are the measurements:

October
Spleen: 4.1 cm x 3.6 cm

Lung:
Right Lobe: 2.1 cm x 1.7 cm
Left Lobe: 1.8 cm x 1.3 cm

December

Spleen: 2.9 cm x 2.6 cm &  the one near the gastroesophageal junction is 1.4 cm and is barely visible in the transverse dimension.

Lung:
Right lobe: 1.0 cm by 1.5 cm
Left lobe: 0.8 MM x 1.3 MM

Now for the not-so-good news we got today.  Joshs alfa-phetoprotein (tumor makers) are still above normal.  The day we found out he had the brain tumor it was 27!  The normal is 6, last week it was a 9. Dr. Schertz wants repeat lab work done every couple of weeks to continue to monitor that and if it goes up at all we will do a stat full body CT.

Remember, life is what you make of it!



Kobies birthday

Kobie turned 5 on Thursday. We thoroughly enjoyed the day..all 3 of us. Kobie went to school, after school we took him to Chic-Fil-A for dinner and to play in the playplace. When we left there we were going to the Salem Civic Center for Sesame Street which we had not told him about yet! As soon as we drove into the parking lot he said “what are we hear for? ARE WE GOING TO SEE SESAME STREET?”. Thats bad…the last time we took him to the Salem Civic Center was last year for sesame street and he remember! He was SO excited. He got a goodie bag from Channel 10 that had a program, some crayons, 3 chocolate trucks from Boxley, a cup, and a pencil. The lady at Channel 10 had told the manager of Salem Civic Center about Josh and why we won so he got us 2 gift cards to Kroger for $20 each for Kobie’s food for the party. The pre-show party was nice…there was cookies and drinks and of course we got to meet some characters….the count and Zoe. We got a family picture with them. Josh keeled beside Zoe and while the lady was taking pictures Zoe jokingly rubbed Joshs head…I thought he was going to pass out! The show was great! Kobie got to touch all of the characters (remember we were on the front row) except for Big Bird, Oscar, and Elmo. Kobie was really good..all he asked for was cotton candy and popcorn and a balloon. He got the cotton candy and popcorn but I refuse to pay $8 for 1 stinking Elmo balloon. Thankfully he didn’t really make a stink about it.

Today was his party, he got LOTS of toys and has played with every one of them already. When we ask him what his favorite was he names off a different toy each time…he has named them all at least once. Typical kid he didn’t really care too much for the clothes but mommy and daddy do!

Tomorrow at 8am we have an appointment with Dr. Schertz to get the results from last weeks ct. We are both very nervous and expecting the worst! Tomorrow they will take more blood work and we will discuss different treatment options in regards to the brain tumor that was removed. We will also find out how the brain tumor should affect the likely outcome.

We decided to change sites for a few different reasons, the most important was to help spread the word about Joshs Journey and testicular cancer in general. The other site will be open and not require a member id. You can still sign up to receive emails when we post a new update, you can still email us from there, AND it even has a guestbook and pictures. The new site has a lot of different features that this site simply doesn’t have. The new site will not have a character limit for us when posting updates which will be really nice! This site has served its purpose but its time to move on…we hope to see everyone there.

To get emails when we post an update:

If you ARE using Outlook, click “Subscribe to Article RSS” on the right hand side.

If you are NOT using Outlook: On the right hand side, register for an account.

If you have any questions regarding the new site you can email Josh or I at:
josh@dreamscapetech.net
amanda@dreamscapetech.net

Remember, sometimes your best friend is actually a guardian angel in disguise!



This holiday season

Livestrong Wristband

This holiday season when you’re trying to think of what to get that hard to buy for person, perhaps consider getting them a nice Livestrong shirt, or some type of Livestrong gear. You can get something as small as a Livestrong bracelet for $1. You can get some really nice clothes and other gear from them as well. You can purchase any Livestrong gear at the Livestrong Store (http://www.store-laf.org/) or any Dicks Sporting Goods store. If you order online, if you use the code “Give2008” you get 25% off of your order. (Valid until December 18)

Let me just say, you might think Livestrong isn’t for you, or might not know much about it. Let me just say, that Nike gives 100% of all proceeds to the Livestrong Foundation. This is to help find a cure for cancer. You might not ever notice anyone wearing Livestrong gear, but I PROMISE you, that cancer patients and those affected by cancer DO notice the Livestrong gear on people, even if it’s just a bracelet. We notice it, and it really means a lot to us to see people wearing Livestrong merchandise.

With the above being said, I am going to leave you with a video that brings tears to my eyes everytime I watch it. I urge you to please watch this video, and share it with your family and friends. Thank you. 🙂

Josh



When life hands you lemons, make lemonade

Sesame Street Live

While I was at work this past weekend I came across a contest on WSLS Channel 10′s website for a contest for Sesame Street tickets. We took Kobie last year for his birthday and he LOVED it but this year we couldn’t swing it financially. To enter someone in the contest you had a fill out a simple form but you also had to state why you thought the person needed the tickets so I entered Josh and told him his story. Well….today he got a call from channel 10—-HE WON THE GRAND PRIZE! He won 4 front row tickets and passes to some pre-party to meet all the characters. He was shocked because I didn’t even tell him I entered him because I never win anything. We are both so happy. We haven’t told Kobie yet, tomorrow is his birthday so it will be a surprise!

Josh had another CT today. After the CT he always requests to see the images but since he is not an expert he can’t really figure out what it is most of the time. He does know that there is still a tumor in the spleen but he didn’t know if it was larger or smaller. He wasn’t sure about the lungs or liver. We have an appointment with Dr. Schertz on Monday to discuss the results. I don’t anticipate hearing from him before then until the results are really bad.

I hope everyone got out and enjoyed today….you don’t get to do this day over again

This post was posted on Wednesday December 3, 2008 at 9:04PM



Dr. Harron

Josh had an appointment with Dr. Harron on Monday. Everything looks good. The sutures are gone..well all but 2 are, she missed two. Dr. Harron strongly suggests that Josh get whole brain radiation to kill any micrometastases. Micrometastases are metastases that are too small to be seen. Dr. Harrons only concern is the brain can only handle 3000 centiGray before it suffers permenantly so they would give just under that amount of radiation meaning that he would no longer be able to have radiation on his brain…ever again in his life. However, if he had another tumor develop in his brain in the future they could give a small “booster” type radiation to that one spot but never again could he have whole brain radiation. Josh has a CT tomorrow and a doctors appointment with Dr. Schertz on Monday so this will be discussed.

Here is a really good website on whole brain radiation for anyone who is interested:
Brain radiation information

I also found another very interesting abstract article written by Indiana University about brain metastasis; here is a little bit of it.
Brain metastasis occurs rarely in patients with testicular cancer in the modern era where cisplatin-based chemotherapy regimens are used. The occurrence of brain metastasis can be synchronous or metachronous (with or without concurrent systemic disease). Long-term survival can be achieved in some patients. The vast majority of testicular cancer cases with brain metastasis reported in the literature involve nonseminomatous germ cell tumor and this subtype will be the focus of this review. This article reviews the literature of the diagnosis and management of brain metastasis from nonseminomatous germ cell tumor of the testis.

Josh has malignant non-seminomatous germ cell tumors.

This post was posted on Tuesday December 2, 2008 at 9:09PM



Happy Thanksgiving

Happy Thanksgiving

Hope everyone enjoyed their Thanksgiving. Thanksgiving at our house was not like any other we have had before. We really had lots of things to be thankful for as I am sure you all do too…sometimes we just don’t realize everything we have to be thankful for!

Josh has been feeling better since being released from the hospital. At times he still lacks the coordination that he once had, we will discuss that with the surgeon on Monday when he goes for a followup. I did shave the rest of his head which he was not happy about but he looked funny with a big bald spot from the surgery. We have several doctors appointments in the next week or so and even another ct to see if the cancer is still shrinking!!!

Several people requested that we open a bank account to accept donations to help with medical expenses which we finally did. You should be able to go to any Member One as donate money to the Josh Robertson Cancer Fund / account 160502. Do not feel obligated, we only did this after getting multiple requests for it!

Hope everyone has a great week.

This post was posted on Tuesday December 2, 2008 at 8:42PM



Home

Josh got discharged tonight around 8ish. We are home so hopefully we can both rest better tonight. Tomorrow we have a few errands to run to get some loose ends tied up before the holidays. On one hand its been such a long week but on the other I can’t believe that this is all over and we haven’t even known about the tumor for a week yet! I will post more tomorrow…we are both exhausted and still have to find a way to get him clean without getting his head or port wet.

This post was posted on Monday November 24, 2008 at 8:59PM