What a crazy couple of weeks.
It started...end of March. Shana wasn't feeling very good. Headaches, dizziness...the words that scare me the most. She went to the doctors, then you have to wait for a referral that never comes.
On April 15th, she goes to the ER. Thankfully Tiana (my grand daughter) goes with her....and texts us on the developments. Then I get a call in the middle of the night...they are keeping her, there is a tumor and cysts that they need to remove.
As I hang up the phone, a dark cloud comes over me. Remembering my mother's surgery last summer. Dread. Fear. Sadness. ...and worry for my daughter. What she must me going through right now. VHL Sucks!
I never get back to sleep. I go downstairs and wait for the sun to come up. I pack and leave for the hospital. My husband is so very understanding, I kiss him good bye...
Mama Bear takes over.
The drive is about 1 1/2 hours...I pick up my grand daughter and meet at my other daughter's house. We are all nervously quiet.
Loma Linda University Medical Center is in Loma Linda, California. San Bernardino County...about 100 miles from my home.
We get to the hospital and Shana is worried. She had been crying. My heart breaks... She tells us what the doctors have said and surgery is scheduled for Monday. (it's Saturday). I ask the doctors and nurses about testing for a Pheo (pheochromocytoma). I believe this is why my mother passed away during her surgery. The doctor orders a 24-hour urine test.
I've packed for a few days, knowing that I would stay with the kids. It's hard being away from my husband but it would be harder not being here. We go through the motions and prepare for Monday.
Monday comes and we don't have a definate time. We are all waiting in the waiting room. Shana can only have two visitors at a time. We rotate. Her children, her siblings, her parents...all there.
I've been asking about the test results. No one seems to have an answer. I tell the nurses, "I will not allow surgery to happen without those test results".
Eight hours have passed...
Finally at 6pm, the surgeons come in. They are ready to take her to surgery. I ask about the tests and they say they are taking her without the results. I ask "why did you order a 24-hour urine test, if you weren't going to wait for those results" ? I tell them, they can not do the surgery without those results. I explain that if she is in surgery and the Pheo "fires off"...she could have a crisis on the table. I CAN NOT LET THEM DO THE SURGERY. The surgeons then get on the phone...later I find out they are speaking with endochronologists. ...and they decide they need further testing. CT Scans follow, blood tests...and we wait for the urine test. I find out later that they had to send that test to an outside lab and it could take a few days. I also notice the nurse running into Shana's room to get her urine out of the refrigerator. 24 hours were up at noon on Monday. They never had any intention on using the urine tests to decide. UGH!
I get so frustrated with doctors sometimes. Some listen, others placate, most ignore me. But after experiencing my mother's surgery. I will NEVER not ask question with out a satisfactory answer. I only have one Shana.
This surgeon is experienced in vascular neurosurgery. Which is a good thing. Hemangioblastoma's are highly vascular. But he only does surgery's on Monday and Thursday. So we hope surgery will happen on Thursday.
....it doesn't. Test results are not back yet. The CT Scan shows an abnormality on her adrenal gland though.
|Waiting for surgery|
Shana is getting restless...it's hard being in the hospital, away from home and your kids. Even though we visit every day. She wants it to be over with.
Pastor Kenny comes by...he is an awesome presence. He is sweet, gentle and kind. He listens and then prays with us and for Shana. There is a light in the room...I feel my mother there.
Shana's surgery is now scheduled for Monday afternoon (April 25th). That morning, I get up with the kids...the plan is to take them to school, I will pick them up as soon as I'm given the surgery time (they can't afford to miss much school, especially so close to year end) and get to the hospital directly after. So we get up...I walk the dog, as soon as I get inside, Tiana is at the bottom of the stairs: "they are taking mom into surgery now". Ack! I tell them to get up and ready, we need to leave ASAP!! I call my other daughter, who happens to be on her way to work and right around the corner from the hospital. I ask her to make them wait till we get there.
We're 20-30 minutes away...and it's rush hour!
When my mother had her surgery...I knew she would be having surgery but I never imagined it would be immediately. When I got to the hospital...she was sedated and tied to the bed. They said she was fiddling with the IV's. My mother was blind, I knew that this is the way my mother saw. Through her fingers...she wasn't fiddling...she was looking. She was sedated. I hope she knew we were there. I kissed her and told her I'd be "right there" waiting for her to come back. ....I never saw her again.
I couldn't let this happen with Shana! Neysi would hold them off at all costs...and she did! She told the nurses...that they COULD NOT take Shana without her family seeing her. Trying to explain what happened with her grandmother. She was in tears and the anesthesiologist told her they would wait. Thank Goodness! Because I broke speed limits to get there. So did her father and brothers. We all got there at the same time and were able to see Shana before her surgery.
She seemed ok with it. She wasn't scared. She was calm. The anesthesiologist prayed with us. I kissed her cheek and reminded her what grandma told her in Shana's dream. "Everything will be ok". Then they took her off to surgery.
My other daughter and I went to the chapel...we prayed. I asked for God to be with her. To guide the surgeons, to please bring her back to us... I also asked my mother to hold her hand, cradle her in her arms and keep her safe.
The thing I really like about his hospital is they text you as surgery progresses. So while in the waiting room, they texted when the surgery began. When they started the incision, when they were working on the mass...and then, 5 minutes after they started on the mass...we get a text saying the surgeon wanted to speak with us. AAAAAWKKK! I've seen it on TV many times, but never experienced them calling us into a special room?!!! Neysi is trying to keep me calm. I'm starting to panic...I'm brimming over with tears. The stress of the last 10 days, is just too much. I've tried to stay strong for my family....
The surgeon comes in...I can barely talk but I ask him "Is she ok?"...he says "Yes". I ask "Yes"???? My ears hear it but...I'm barely processing any verbage. But she is ok. The other surgeons are closing. He said, everything went as planned. I ask him if I can hug him...I do. And I say: "God Bless your hands". A relief sweeps over me...but I know I still need to be strong...recovery takes months.
We go back into the waiting room. My grand daughter is standing at the edge of the waiting room. looking so frightened and concerned. I tell her everything is ok. A big sigh comes out of all of us. We wait till she goes to recovery in ICU. Saying our prayers and thanking God for this blessing.
I have this thing with Shana. I KNOW she is ok when I look into her eyes. She knows this...no words need be spoken. I just know. As soon as I see her...no matter how many tubes and wires are in and around her...her eyes, tell me she is ok. She is ok. She is tired, weak and needs rest, so we limit the visit to just minutes. All the other family members come and see her, two by two. We leave her to rest...and will be back in the morning.
I feel like I've been at the "starting line" of a race for the passed 10 days. I cry in the shower...not wanting the kids to see me crumble. I try to be strong. I say my prayers everyday!!
The next day Shana has already been out of bed...doing laps around the nurses station. She only spent 12 hours in ICU. She is so strong...she amazes me!
She gets to go home on Thursday...13 days in the hospital, 4 days after surgery.
One evening, as I sat on the edge of her bed...she tells me, "I saw grandma", "I felt her hand on my face, brushing the hair from my eyes"...like she used to do when I was little. "She cradled me in her arms". Tears spill down my face. I knew my mother would be there. She and Shana were so very close. There is a calm and peace about my daughter now. Something we've never experienced before.
Not long after my mother passed away, Shana had a dream about my mother. In the dream, my mother was mad. "damned VHL!"...my mother rarely cussed, if ever. She also told my daughter that "Everything is gonna be alright". We hold on to those words. I reminded Shana about her dream, just before she went into surgery. They give us all peace.
|Our family at the Mom's Day Run. Shana is in the wheel chair.|
We planned a Mom's Day Run in memory of my mother and in honor of Shana. Shana was determined to be there...and she was (13 days after surgery). We had a good turn out despite the the previous month (I wasn't able to advertise as planned). We raised $1,500 for VHL!!!
|Shana at the Mom's Day Run ~ VHL Sucks shirts|
|My sister's tee-shirt|
|A Moment with Mom|
The participants, mostly family and friends, sprinkled with a few strangers...were all so kind to come out on Mother's Day and run along the beach with us. Some spoke to my daughter, giving praise and commenting on her remarkable spirit. Hugs, words of inspiration and encouragement...it was a beautiful day.
After the Run, we went to the sand (we had spread my mother's ashes at sea) and had a moment with my mom. We miss her so much...and know she is proud of us today. We will honor her memory every day...especially Mother's Day with the Mom's Day Run, raising money and awareness for VHL in her name!
SIDE NOTE: Up until this surgery, Shana's medical team has been watching five other brain tumors. Watching for any new development or change. After her surgery, they did a MRI...and to our amazement, there are no other tumors in her brain. I can't explain it... and I don't think I need to.
We are so greatful, today!
We know that with VHL...you have to be "on guard"...because it's always lurking there...but today, we are "thankful"...we are "greatful" to have one more day.