MRI Results
We have received the results from yesterday’s big MRI. It was his first MRI after radiation treatment. On the MRI, the tumor bed looks exactly the same as it did before radiation—it did not grow or spread, but it did not shrink or go away either (which is what we, of course, wanted). So is this good news or bad news? We really don’t know. Obviously the fact that it did not spread or grow is very very good news. The fact that it did not shrink or go away may be good news or bad news, we just don’t know yet because the MRI test cannot distinguish living tumor from dead tumor or scarring. Therefore, we simply do not know at this point whether the radiation killed all, some, or none of the tumor cells.
At our request, the doctors are also considering another test (spectroscopy) to try to determine if the cells in the tumor bed are living or not, but they do not seem confident that the test will be a completely accurate determination of that issue—so we may never know for sure at this point. It appears that the most accurate--and most nerve-wracking method for us--is to wait for a couple of months, have another MRI, and see if it grew or not in the interim. Then wait some more, and do it again… It is a very stressful way to live.
Over the next week, the various specialists will meet to discuss the results of Jackson’s MRI and to decide his next course of treatment. They plan to tell us those results late next week.
Based on our discussions this week, though, it is almost certain that he will start chemotherapy again in February, albeit with a different set of drugs. He’ll also return to SF numerous times throughout February to undergo a variety of other tests and procedures. These include going under anesthesia for another hearing test and another eye exam (to look for a specific eye cancer often linked to Jackson’s type of tumor). He’ll also receive further immune system infusions and testing, as well as have an appointment with an endocrinologist to look at possible radiation side-effects.
Jackson is still extremely tired. He still doesn’t talk or play much, but he is eating like a champ. His radiation doctor told us not to be worried yet about how lethargic he is because it is a direct result of the radiation treatment. We’re hoping his energy levels pick up soon, though, so he can start interacting a bit more and maybe have a little more fun. Thank you very much to Team Jackson for all of your support.
At our request, the doctors are also considering another test (spectroscopy) to try to determine if the cells in the tumor bed are living or not, but they do not seem confident that the test will be a completely accurate determination of that issue—so we may never know for sure at this point. It appears that the most accurate--and most nerve-wracking method for us--is to wait for a couple of months, have another MRI, and see if it grew or not in the interim. Then wait some more, and do it again… It is a very stressful way to live.
Over the next week, the various specialists will meet to discuss the results of Jackson’s MRI and to decide his next course of treatment. They plan to tell us those results late next week.
Based on our discussions this week, though, it is almost certain that he will start chemotherapy again in February, albeit with a different set of drugs. He’ll also return to SF numerous times throughout February to undergo a variety of other tests and procedures. These include going under anesthesia for another hearing test and another eye exam (to look for a specific eye cancer often linked to Jackson’s type of tumor). He’ll also receive further immune system infusions and testing, as well as have an appointment with an endocrinologist to look at possible radiation side-effects.
Jackson is still extremely tired. He still doesn’t talk or play much, but he is eating like a champ. His radiation doctor told us not to be worried yet about how lethargic he is because it is a direct result of the radiation treatment. We’re hoping his energy levels pick up soon, though, so he can start interacting a bit more and maybe have a little more fun. Thank you very much to Team Jackson for all of your support.
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We’re with you guys every step of this long, painful, heart-wrenching process. Glad to hear he is eating, and hope to hear that in the near future he will be up playing with WyWy, reading Curious George books, and watching Cars (or have we moved on to something else yet?)
Love you Jack!!
Sam
Well, I will look at this glass of milk as Half Full! While granted, I was hoping, praying and wishing that the MRI would show that the tumor had vanished or shrunk at the least. But the positive and hopeful side of me is very happy it didn’t grow!!
As for the tiredness.....I am more happy that you are eating!!! I wish I could read about more playing and giggling but I am thankful for the eating like a champ. To remember back on those days of no food or drink was yicky, so once again my cup is half full.
And my final thankfulness Jackson is that you have been blessed with two loving and awesome parents with a fabulous little brother all of whom love you more than any website could ever prove! This fight will obviously continue but just remember this...Team Jackson will not quit until we win! Keep on fighting Jackson and doing the great job that has inspired us all!!
Patricia, Juan, Tommy & Nicky
One day at a time...though the results weren’t as definitive as we had hoped, there is good. No growth!! I won’t ever stop praying and asking for the day to come that the MRI shows no more tumor!!But until that day, keep smiling and enjoying every day.
I heard that you got to enjoy the park the other day and Maggie got a BIG smile!!! Just don’t let PaPa drive you nuts like he did me when I was a kid, believe me he’ll do his best, but stay strong, it’s the only way I survived....
I love you all and keep your faith. Missy
Though I must admit, initially we were disappointed because we just want that darn thing gone. But after becoming more grounded, we feel thankful that it did not grow. We will keep praying that the cells have died. You all are constantly our minds and in our prayers.
Team Jackson Jobe,
Congratulations!! Believe us when we say the results you have recieved are great news. We know how much you wanted to hear that the tumor had been blown away or even shrunk. We have been there and continue to live in the space you do. But do take time to understand the results are fantastic. Enjoy the day’s and may you continue along a path of overcoming the disease.
Keri and Kelly,
Thanks for sharing on Jackson’s respond to his latest treatment. Glad to hear he is stable and having the best appetite.
We seem to be at the crossroads now, deciding where to go. There’s so much possibilities and probabilities at this point. Here’s wishing both our families, the best path to walk on and get the trophy in the end. Love and hugs to Jack from Davina.
http://www.caringbridge.org/visit/davina1
You just keep eating and resting buddy. Sure hope those cells are dead and just like having their picture taken
As much as we were hoping and praying for our miracle news sooner rather than later, we are certain in our hearts that the battle is being won. God sometimes makes us wait and pile those prayers up sky-high before He fully grants them, but He will come through! The news so far keeps our faith going!
Meanwhile, we are celebrating that there isn’t any growth. How wonderful that news is!! Sweet Jack, you get all the rest you need, enjoy your yummies, and know that we’re right here by your side.
You are our hero, and you inspire us every day!!!
Keri and Kelly:
We are praying and hoping that the tumor doesn’t not grow any more and that Jackson will beat this disease. May God bless you and your entire family.
Friends of Ellwin and Pam
Jack and family, you continue to be an inspiration and we are in awe of your courage and perseverance. Baby Dillon is your newest fan. While in the hospital dealing with jaundice, we experienced just the smallest fraction of concern/anxiety that you deal with on a daily basis, and we think you all are incredible.
Hi Jobe family
I will be thinking about you while you meet with the doctors today in SF. I am confident they will create a plan to aggressively attack the tumor. Sending my best from Sac.
BTW my security word I had to type in the box was “attack”....good sign
Hey there big guy....I can’t believe it’s already been almost a year since everything started...but I see such a strong boy from all this! I have people asking daily about you...it’s funny how people you don’t even know have grown to love you so much, but through this all...this only means that more and more people are praying/loving and supporting you and your family! We sure do miss you, and always remember that we are thinking of you every day, and praying for that one MRI to show no tumor! In the mean time, we hope you are able to enjoy playing with Wyatt and catching some ZZZZZ’S. We love you Jackson, and your team is here 110% of the way! xoxo