Katie Update

[chixter]

Hi all. It has been a very rough week here at the beach. As most of you are aware Kate's FOLFOX treatments were suspend as they were deemed not effective. Tuesday night he fever spiked to almost 104. We took her to the ER and made contact with her ONC. Her Hg level was 5.2 he heart rate was around 150 while just laying in bed. she was admitted and placed in the ICU and given transfusions, iron. and a battery of IV antibiotics. Over the next several days we as a team decided to get a colonoscopy done to send the tissue to MMSK for genetic and immuno-history analysis, and other studies. The next step was to see if we could locate the bleed and try to stop it. Her medical team also believes that once we get her stable, to begin chemo with FOLFURI as the pathology at Sloan will take a few weeks.

Her colonoscopy revealed a squeaky clean colon. Nothing inside. The so called primary tumor is a large mass on the OUTSIDE of the ascending colon near the cecum. The partial blockage shown on the scans is due to the tumor pushing into the colon from the outside. It is also breaking some of the smaller blood vessels in this area. the GI had to incise a small part of the colon lining to gat at the base of the external tumor,,,he managed to get a pretty good sample and it is undergoing procedures at Sloan now. There is a small suspicion of it being a Stromal tumor...a GIST (you can look it up) but until pathology is complete???

She then visited the cardiac cath lab where a surgeon accessed via the femoral artery, several smaller vessels that most likely are the major contributors to the bleed. He placed 6 coil stents to stem the leakage. I hope they work.

The worst part of the entire ordeal was I reviewed her scan with her ONC. Her liver, while still functioning normally is tremendous. Her belly is extremely descended and compared to her Dx scan things have progressed terribly. We got her home last night she has intense pain everywhere. We were given two good rx for pain management.

Tomorrow she is scheduled for round 1 of FOLFIRI which we hope will at least keep this beast at bay until we can fine tune the chemo based on the Sloan tests.

[KWT]

Chixter, this is just terrible no one should have to go through this especially a 25 year old who should be planning a future not dealing with this monster. I hope they can get this figured out one thing is for sure she's in good hands. I'm hoping Katie can get some relief.

Best,
Kennyt

[coloradowalt]

Prayers for Katie and you.

[Bev G]

Horrible news, Chixter. Stromal cancers suck. I hope MSKCC can get this figured out right away, and get the right treatment going ASAP. I am so sorry Katie is in pain. Certainly yours is nearly as bad.

Love to you both.

Bev

[Voxx66]

Damn - I am hoping they can get that hemo stabilized as that will be key to any other treatments. Those coil stents may do the job. In the meanwhile, I hope a way is found to take care of the pain.

[janklo]

It's good though that you found out more information and that will help decide on treatment. You're moving forward!

[so-scared]

This whole thing is so tough. I sure hope that the analysis at Sloan gives you answers and direction. I pray that her pain is well controlled with the new medication.

Hugs to both of you!

[orcasres]

I just cannot imagine how hard this is on her, you and the family. I wish there was something to say or do other than to hope and pray that you can make progress on her treatments and that she can remain comfortable as this happens. I have two sons (27 and 30) and I just know how much I would be hurting now if they were going through this.

Lois

[CRguy]

Sending prayers and posi+++VIBES for Katie keeping out of pain and getting whatever she can, done, and moving forward with a plan.
In Harmony with you both
CRguy

[Delinda]

Chixter, Katie is so fortunate to have you as her dad - sounds as if you're a couple of fighters. I'm so sad that she has to endure this. Praying for a treatment plan that helps quickly. Take care of yourself as you take care of Katie so that you can stay strong. Hugs, Delinda

[Val*pal]

Wishing Katie the best! I hope the pain is well managed and that the bleeding will stop so they can do the chemo.

[Kathleen808]

Oh Chixter,
I am so sorry your precious, beautiful Katie is having such a difficult time. You are a strong advocate for her and I pray Sloan can quickly give her some answers and start beating this cancer back. I am so sorry all of you are suffering.
Sending love.
Aloha,
Kathleen

[Guinevere]

Please know that your, Katie and the family are in our thoughts and prayers. It sounds like everything that can be done is getting done. Waiting on test results absolutely stinks!

God bless ~
Guinevere

[lauragb]

This is not right, not fair....I hope and pray those pain meds are working and you get answers ASAP from Sloan.

[Rob in PA]

Praying you get the answers you need from Sloan. Hugs to Katie. Sounds like a tough young lady.

Rob