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.

We 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.

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.

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

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