Kharisma’s Journey

KurtisandKharismaUCDavisMedCenterJan272015 On January 23, my oldest daughter Kharisma was in the ER again with severe stomach and back pain. The next day she was admitted.  She came home after 8 days of repeat CT scans, MRI, medication management and ending with a Celiac Plexus block.  In August she spent a week there also. A biopsy led the team to believe she had Epithelioid Hemangioendothelioma (EHE).  While the biopsy turned out to be inconclusive, we were led to believe that the several lesions on her liver were benign. During this stay, we learned they just don’t know yet.  She has to have continuous follow ups with dynamic MRI to follow the course of any growth and re uptake in any cell progression. Because EHE is so rare and only first discovered in 1982 no one knows what to do but watch it. I had 2 doctors be most honest with me and I do appreciate them, but I am not certain I would have gotten that conversation if a situation had not happened the day before. From that point on, a relationship was formed with one of the specialists who also cared very much for my daughter.

DeMantaiandKharismaUCDavisMedCenterJan252015We were told that they couldn’t go in and remove the lesions because there are too many and she wouldn’t have a liver left after dissection. We were also personally told that she may need a liver transplant. Some physicians will form a relationship with you, other’s will not. Then other’s will stay in the middle, set compassion to the side, withhold answers, or give few. Sometimes because they don’t have any, or because they don’t have enough. They aren’t intentionally out to hurt us. They don’t have a magic ball and they don’t have super powers. Every situation is different.

Where does that leave us? Where does that leave my daughter? It doesn’t! It leaves us with uncertainty. It’s easy for everyone to say put all your fears in the hands of God! Let God take over.  And no I haven’t lost my faith, and oh yes I’ve already prayed over this and asked forgiveness, but God isn’t going to get my girl to her doctor appointments, he’s not the one to keep up with all the phone calls or pick up the phone to return them, he’s not going to keep her from hurting but meditating on his hope might. Faith keeps us strong to achieve those goals. He would want each person involved from medical to us to self to do the best they could.

KurtisandKharismaUCDavisMedCenterJan252015

Then right back to the same thing. She has to have a referral from her primary to get to the new specialist. That’s just the way the process works. Insurance rules. There’s nothing I can do to jump that hurdle for her or make anything move faster.  I am a mama feeling helpless. I asked 2 of the team in the presence of my husband Erik, my son Kurtis and with Kharisma when will it be too late to intervene with Chemo, Radiation, other? When?! When is it going to be too late? They did not know, but were honest.  The only 2 doctors that gave that much. And I suppose with my next statement anyone can call me paranoid or over thinking it, but I have wondered if my girl isn’t being monitored to learn from this rarity.  Without people to learn and study from there would be no progression in medicine.

Kurtis stayed with his sister each day, came home late, went to work first thing in the morning and back to his sister. We went to see her at the same time each day between 2 and 3 pm. Her sister Rikki took her cupcakes. We took our daughter’s son up to her, our blessing of a grandson De’Mantai Xayvier, as did Kelly who is also grandma to ‘Tai. When you are forced to have conversations with your children that you don’t want to have because of the unknown but you have to because you don’t know.

TwinkleandKharismaUCDavisMedCenterJan2015

There’s not a lot more to share at this time.  She is returning to work today for as long as she can manage.  She starts PM soon as well. She’s a department manager where she works and has taken pride in that as she should.  We have to stay on it and on top of it. All of it.

Official diagnosis at discharge Hepatic Hemangioendothelioma

Diagnosis in Electronic Medical Record of this hospitalization Hepatic Epithelioid Hemangioendothelioma dated January 27, 2015

TwinkleandKharismaUCDavisMedCenterJan2015_1

I am so very proud of you Kharisma Anna Magdelena! Not only for being a wonderful mom whose son has been an honor student 8 times over, but as a daughter. There is not a single thing you have ever done that we haven’t been able to laugh about later, together! Even as a family! And same for me in the reverse sense. There isn’t a single squabble we couldn’t ever talk about and let roll. That means I gave you something so amazing and you gave me something back just as amazing. The ability to forgive and let go unconditionally. Without holding grudges, without animosity, never giving and withholding love.

I love you so very much!  I’m truly blessed to be your mama.

Dream big it’s never over.

To be continued-

Info

http://sarcomahelp.org/research/epithelioid-hemangioendothelioma.html

http://radiopaedia.org/articles/hepatic-epithelioid-hemangioendothelioma-1

http://www.diagnosticpathology.org/content/9/1/131

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Back From Leave- Update

doing-it-in-gods-strengthCame back from leave about a week ago. Trying to get back to my volunteer related activities and other endeavors. I don’t know how often I will be on and won’t be available for all things. Living with Narcolepsy on top CRPS and the rest isn’t easy either and I don’t take medication to wake me up, so I do the best I can with that. It’s extremely hard to have so much going on and it seem so unreal to outsiders looking in, listening, reading my posts. I wake up at times and it’s takes me a few minutes to realize it’s not a bad dream, but soon enough I know it’s the ongoing reality. As some of you know, I’ve been sharing some of my daughter Kharisma’s story under blog posts “Taking a Break” and a little on FB. I just haven’t yet given any specifics. When she seen the Specialist yesterday, we were left confused. He stated he believed the hospital assumed the previous diagnosis due to the size and placement of the lesions on her liver, especially the largest which is resting at the side of the liver wall. He seems like a good doctor.  I’m glad he’s reviewing instead of jumping right into invasive pokes.  I will go ahead and reveal the first believed to be diagnosis now as he thinks it may be another type of cancer instead. The first was Epithelioid Hemangioendothelioma. I had a hard time with it.

For more information,

Towards a Proper Diagnosis and Understanding of the Pathogenesis of Epithelioid Hemangioendothelioma

Now he is reviewing her Biopsies, MRI, CT, Blood tests, X-ray’s and all records before ordering the repeat Biopsies. Now he thinks she may have Colon Cancer. What, how? I research everything I can get my hands on. While people can have Colon Cancer and not even know it and even perhaps have no symptoms, she doesn’t have any symptoms of Colon issues. Only the pain. Pain I know because of my  own liver issues and removal of lesions with my second Gall Bladder surgery just 15 months ago. We’re still left without definite answers so treatment is still in the future. Many more appointments. She’s 26, our oldest and the mother of our 8 year old Grandson.

2 days after the injury to my right hand our 17 years old son Kurtis finally had his appointment at Shriners Children Hospital in Sacramento. We learned that his Degenerative Disk Disease was not the results of his brain injuries when he was 15 and diagnosed with DDD at 15, but instead Congenital Defects of the Spine. He was born with Spinal Stenosis and Spondylosis. We’ve known for 2 years that his 2 of his disks have thinned greatly and now we know they’ve (L2 and L4) deteriorated further with Neuropathy and that he also has a tear at S1.  Yep, my heart broke again. He’s a 4th year Sheriffs Volunteer. Many awards. Even from Senator Steinberg and the California Legislature.

All I could do what tell him/post to him –

“Kurtis, You never knew you were born with it,

Go on like you still don’t. ~Mama”

I was born with Arthritis, too. I went on through life as if it wasn’t apart of me. I’m not saying it didn’t hurt, but the more you dwell on pain, aches, what you can do, might do, or have to rest from the more you give up on life.

I didn’t. I still played 8 years of softball and made sure that when I began working it was on my feet. Moving. All Kurtis needs to do right now is protect his back and spine by moving it or losing it. There are no options for surgery at this time and he will not be placed on any pain medication.  He is strong and he has goals for the future.

Kharisma, while going through all this has been promoted at work and is seeming doing well.  It’s always ‘seemingly” isn’t it?. We are fighters! We just hide most of it that’s how we go on. Emotions.

And then there’s Erykah, our daughter who is getting ready for her and her other half to move into their first home next week. A beautiful home. How can I not feel bad for her, I know she’s pained too, getting lost in all the medical health chaos of her family. She was our Army girl.

The human body when it reaches a certain point in pain will pass out, shut down, the human psyche will either hold on, break, come back, attempt, or kill itself.  It’s emotions that take control of the mind.  It really hurts to hurt. None of the above includes my husband, or myself. Not really. Not any of his medical appointments, PT, etc. And me, I’ve put mine on hold, I had to, my 5 lights will always come first.

So here we are the ride isn’t over, there’s still another story I haven’t shared yet, not in its entirety. When I do, I want it to help others. It may be later down the line.

That injury I sustained was without a single pain pill. I’m not saying it didn’t hurt or it isn’t hurting, I’m just saying (for me) I didn’t have to go there. #StrongerThanPain I still haven’t and on the 15th it will be a month. Vitamin C, Ibuprofen, deep breathing, meditation, focal points and going to my happy place in my mind where there is no emotional pain. Where there are no mis diagnosis’, and delayed help. Those lesions were found on my daughters liver 16 months ago, but she was dismissed due to no insurance (assumed). Or maybe just because it didn’t seem important enough at the time. My happy place where we’re all camping at Rumsey in Yolo County. Our spot for several years.

Change the direction of your mindset and you change the direction of your pain.  ~T