Monday, September 20, 2010

Update on Jack and The J-Team

Last Thursday and Friday were full of doctor's visits. This was our first time back to the hospital since his stay after surgery and it was evident. He was NOT happy!

At clinic, his weight was great! I was really happy to see that he is still at 35 lbs! He was on liquid nutrition in the hospital and it took him a while to get back to any sort of normal with eating, so I was a little worried that he had dropped a little weight.

Dr. G gave us the results from Boston.

"High-grade spindle-cell sarcoma, unclassified".

So, basically, the guys at Harvard think the first diagnosis (Hemangiopericytoma, also known as HPC) is off. HPC is typically low-grade. They found their preliminary diagnosis, infantile fibrosarcoma, was also off.

They don't know what it is. Hmmmm.

Umm, helloooo, Harvard?!? *Knock, knock* Thought you were the best??

Next up on the tumor tour: Oklahoma City. There it will be viewed and examined by a pediatric pathologist with hopes that more light can be shed. We should be hearing results from OKC within a few days.

After that, it may make a stop in Salt Lake City.

This is getting ridiculous, honestly. Is a world tour next?

I know that we have some of the best people in the country working on Jack's case and I really am thankful for that...I just wish we could have an answer. We thought we were past this part.

But, whatever. It is what it is. We are going ahead with treatment.

Monday, September 27th, we will check into the hospital for our first round of in-patient chemo. He will also start radiation.

The idea is that we know basically what we are dealing with, so they have formulated a plan to treat any remaining cells (of which there are hopefully NONE) and lower the chance that anything could come back.

The results from OKC (and SLC if it goes there) will determine how many rounds of chemo. If they agree it's high-grade, chemo till Christmas. If they say it's low-grade, we could be done by Halloween.

The chemo is a completely different kind than before. We will be in-patient for three days every three weeks. It's two can't be given in conjunction with radiation so we have to hold off on that one. That particular drug is also known to be hard on the heart. Yet another thing to be concerned with...the side effects of what we authorized the doctors to give him.

Radiation is daily...and he will be sedated every day.

Moving on.

From the plastic surgeon we heard that he is healing wonderfully. He instructed us to push his activity level this week because it is likely that radiation will set him back. This week, and this week only, he is allowed to run in the house :)

The orthopedic surgeon said basically the same thing. We were given some great tips on how to help his scar lie more flat.

At physical therapy, Jack did awesome! He excelled at all of the tasks. He does favor his right leg, but that is to be expected. The therapist gave us some great ideas. We will probably go back once a week for awhile just to ensure that he is back to 100% and counter-effect the radiation.

Sometimes the road just seems to be getting longer and bumpier.

It is hard to stay positive-positive-positive all the time, although we really try.

I'm beyond thankful for a God who understands my heart and whose grace is new every morning. I can rest in His plan and that is comforting when nothing else is.


The J-Team

One thing that is certainly lifting our spirits is seeing just how many people support Jackson!

The J-Team has almost 60 members and I know of several more people that still need to register! We are the 5th largest team...out of FORTY! We are also the 3rd highest fundraising team! SO AWESOME! Especially since this is our first year.

Some info for those doing the Heroes for Children 5k with us on Saturday.

*If you need to pay for and pick up (or make arrangements to get) your shirt, call: 972 937 3111. There are extras so even if you didn't order one back in August you can still get one! They aren't race-specific, just a shirt to show your love and support for Jack!

*I am planning on going to Luke's Locker and picking up the packets on Thursday or Friday. PLEASE let me know if you don't want me to get yours.

*We will be getting to the race early to establish a meeting place. Look for us in the neon green J-Team shirts! There will be some sort of banner or sign to help you find us (we are from the country so it may be a shirt on a really long stick).

*We will have the J-Team shirts for those of you that could not get yours prior to the race and we will also have the packets (the packets consist of a race number and the t-shirt that comes from the sponsors of the race).

I think that is it! PLEASE let me know, via comment facebook or text, if you have any other questions about Saturday! We are SO EXCITED!

Again, THANK YOU THANK YOU THANK YOU for showing your support for Jackson! Your support truly means the world to us.

Of the people racing with us, some are family-some are close friends-some are people we haven't talked to in YEARS-some are people we have never ever met. It is AMAZING to see and feel that kind of love. I can't wait to show Jackson all the shirts with his name on them :)

I just hope he is in a good mood...after all he has been socially sheltered all summer! ;)

{If you can't race with us, you can still show your support! You can donate HERE, or you can register for the walk HERE! Either way, your dollars go DIRECTLY to aide Texas families battling childhood cancer!}

But those who wait on the LORD shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.
Isaiah 40:31



  1. If his scar is completely healed use vitamin E oil and massage it on the scar. It was used at The Therapy Place to help with scars when I worked there. You are so strong and I'm happy to hear he gets to run in the house this week! Go Jackson Go!

  2. Prayers for sweet Jackson and all your family as you continue this bumpy and winding journey!! You have an amazing faith that will see you all through :) Hope to see you at the HFC 5K...Team Philip will wearing yellow shirts (hopefully if they get ready in time:)
    Peace of our Lord be with you



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