ER for us...

[kellyOd]

Ryan presented with headaches since Thursday.. we thought maybe it was a side effect of an “upped” dose of his seizure med. turns out it was not.

Ryan’s brain is severely swollen. That is why he has had increased seizure activity. My senses told me something was wrong.. but hoped it was the meds.

Long story short, he got an MRI that told us how swollen it was. And the bad news.. the tumor that they removed in August of 2018, is regrowing in the exact same spot. As of right now there are no other new lesions. Just that one. And Ryan is really in tune with his body, and doesn’t have any pain anywhere else. So for right now; unless someone does a PET scan anytime soon, is the only thing we are focusing on.

Currently still on the Oncology Unit, admitted; getting IV steroids (decadron) so the swelling will go down. Will be here at least for another day if not two.

Just an update..... love to all

[missyrand Ambassador]

Kelly,

Bless you both. I'm concerned with the brain swelling and relieved Ryan is getting this addressed with steroids in the immediate, and then I'm sure there will be consultations for next steps.

You are in my prayers.

Missy

[kellyOd in reply to missyrand]

I have my rack of questions ready to go..

What caused the swelling?

How much has the tumor grown?

What is the next step treatment wise?

What passes through the brain barrier?

Is gamma knife and immunotherapy an option?

What should be his restrictions?

Can he still work? Should he even try?

Doctor hasn’t been in yet, so trying to think of anything I can..

[missyrand Ambassador in reply to kellyOd]

Here is another, and it's a toughie: given this development, what is the prognosis? Should we consider SSDI disability? Who is the contact here for palliative care?

Courage to you,

missy

[kellyOd in reply to missyrand]

We see a palliative care doctor regularly Already even though he’s not In pain. Helps with meditation and dietary needs! I’m not sure what SSDI disability is but he’s already on disability. Has been since he was first diagnosed years ago. Brain Mets are not good... we are looking at another surgery if his PET comes back favorable tomorrow.

[missyrand Ambassador in reply to kellyOd]

You and Ryan are heavy on my heart

Peace

Missy

[Vflowers]

Kelly,

Prayers for you and for Ryan. Familiar territory for me. Have they recommended surgery to relieve the pressure?

[kellyOd in reply to Vflowers]

Pressure is being controlled by the decadron, but surgery is on the table as of now for removal of the tumor so long as the PET comes back favorable. If the disease is spreading again, they may tell us radiation is a better option

[Vflowers in reply to kellyOd]

Wbr is what my son endured 20 rounds. It wears the out. Keep us posted, thinking of you both

[Bigsister3]

Hi Kelly,

Good luck. My sister did gamma and a craniotomy when one of the tumors ruptured again something doctors didn’t tell us could happen. The rupture caused significant vision loss So it is wonderful that you are both so sensitive to the changes. You always are so prepared and a great advocate for Ryan you are lucky to have each other. Also Ssdi is an option and usually fast tracked. My thoughts are with you

[kellyOd in reply to Bigsister3]

They tried giving him heparin during this stay for possible blood clots from being in bed. But he’s still getting out of bed and we are it accepting the heparin just in case of a bleed situation. It’s a blood thinner so it could be dangerous. Thank you for your thoughts ❤️

[doulagirl]

Kelly,

Thinking a lot about you two in the hospital , is there any news? Sending you tons of prayers and good thoughts to go through this. You are a wonderful advocate and caregiver, be strong and don't forget about yourself!

[kellyOd in reply to doulagirl]

Thank you! Yes we are waiting for a PET tomorrow, depending on that; we have two options. Another craniotomy for removal, or 5 sessions of radiation. We are weighing pros and cons of each. As of now, still getting plenty of decadron to control swelling. Dealing with speech disturbances, and partial seizures due to either the swelling or the tumor. This all sucks....

[missyrand Ambassador in reply to kellyOd]

Yes. It does suck.

I hope you are surrounded by a strong medical team and folks you trust to help you both sort out the options once you have more information. Sleep while you can

Missy

[SGHSweethearts]

Kelly,

I’ll so sorry to hear that Ryan is in the hospital again. I am glad that he is on steroids, and pray that that brings the swelling down quickly. I will also pray that gamma knife is an option. You two have been through so much. You are an awesome caregiver, and It is great Ryan is also in tune with his body. Praying for you both🙏🏻🙏🏻

Michele

[kellyOd in reply to SGHSweethearts]

Thank you. Prayers are always welcome.. and much needed ❤️❤️

[H_Daughter]

I am so sorry to hear all of this. But I'm praying hard for you guys, He is a trooper! I trust he will get through this too. Sending positive vibes, love and prayers!

[carlsbad317]

Praying for you and Ryan.