All About Mom & Best Friends!!!

So I have a best friend. Her name is Shannon. I got a text yesterday, "Hey we're doing walk for a cure, you wanna do it?" I replied, "YES!" I was driving, Yes I know shame on me. Anyhow, I called her a bit later & said, "Am only walking if we have a cool team name!" I said, "Do you have any ideas?" She said, "Walkin for Linda." It hit me.. they weren't just walking, they were walking for MY MOM! Whoa.. I didn't even act shocked although I was. I think it just took me by surprise. LOL! I said how about, "Linda's Fan Club!" she liked that better. At some point and time today I'm going over to her house & setting up our team. There's about 20 people on it right now. 

Obviously this is a post to get more walkers with us! If you want to walk, let me know. If you want to donate because you can't be there, let me know! In a few days we'll have a page up so you can direct-donate to the cause. The cause that has kept my mom alive this long. The cause that has kept my babies with their grandparents for another year, another month, another day. 

My mom IS doing the Survivor walk on June 24th. It's at 7 pm. If you want more information so you can come out & cheer her on that'd be great!! If you don't want to walk/can't walk but want to be there let us know! We'd love to see you!! 

For more information contact me. Thanks!! ~Lisa 

Parkinson's.

We saw Dr. Sibley, I'm unsure if that's how you spell his name. Anyhow, we went in & saw the intern first. The intern wasn't convinced that any of dad's symptom's have anything to do with his tumor. I wasn't exactly nice, although I wasn't mean either. I was concerned. I want answers for my dad. He doesn't deserve to live like this. The intern seemed concerned. As he was looking dad over, the actual doctor came in. The doctor went and looked at dad's disks.

Hope you're sitting down. The tumor has NOT GROWN. How is it possible that Dr. Jani explicitly said that it HAD grown when in fact, right there in the report, with dad's name on it, the radiologist said, "There has been no change." Thank You Dr. Jani for messing this up. Making us worry even MORE about my dad. We were completely hell bent that this tumor needed to come out! It's grown! No, it hasn't grown.

Dr. Sibley was awesome. I wasn't exceptionally nice to him either. He saw my frustration with the mixed opinions of all the doctor's.

I said, "Dealing with all of these doctors is like mediating a divorced couple, it's hell."

He chuckled. The intern interjected that this is a puzzle, we just have to put it together.

As the doctor was talking to dad, listening to him stutter, watching him TRY to keep his thoughts together, you could SEE that he was still examining dad. He watched how he talked, how he moved, his facial expressions.

Then out of no where, he looked at me & said, "Does he tremor often?" I replied that he did, only when still though. I noticed it last week. His hands shake, when he tries to eat, he shakes. I just thought his blood sugar was low.

The Dr. said, "xxxx, I want to see you walk."

Dad gave a confused look. NONE of these doctors have asked dad to walk! He took dad out in the hall and watched him walk.

We came back in the room & he said, "Have you been checked for Parkinson's disease?" No. No he hasn't. He said, "This is what I'm going to do, we're going to call Dr. Li (groan.. I loathe that woman too & expressed as much to the doctor), I'm going to have you tested for Parkinson's & we're going to put you on medicine for Parkinson's. Worst case scenario, the medicine doesn't work. Best case, it works and we make this better for you."

For the first time in 6 months we have something else to go on besides the tumor. All because Dr. Sibley paid attention to my dad. He cared.

We told him about the depression & stress diagnosis & Dr. Sibley said, "No, this is not stress & depression, this is neurological." FINALLY! AGAIN! Here we go! I hope with everything I have that we are getting somewhere with him. They aren't using depression & stress as a fall back because they don't know!

Dad has a doctor appointment on Monday at 9:30 am. I didn't know this until yesterday after work.

Mom said, "Dad said that it's a waste of time for you guys to take off work."

I said, "Uhm, how's he going to get down there?"

She said, "He said he's going to take himself."

I laughed. I said, "Bullshit mom, I'm taking him."

I went out into the kitchen & asked dad when his appointment was.

He said, "Before 12."

I said, "How are you getting there?"

He said, "I'm going to drive myself."

I looked at him & said, "Do you think that's wise?"

He said, "You girls don't need to go with me, we aren't going to find anything out."

I said, "Daddy, it's like this, I don't care what we find out or not, what happens if you get into an accident and hurt someone else? You can barely walk around the house & we're supposed to be ok with you getting behind the wheel & driving somewhere?"

I said, "If it were Pontiac I wouldn't be so pissy about this, but it's Bloomington, they're doing construction, I don't want you to get confused."

He said, "My appointment is at 9:30."

I said, "GOOD we have a date then for 8:30 on Monday!"

He said, "What about your work?"

I said, "Dad, I'll get it figured out."

I am hoping and praying that I don't lose my job. I would NEVER EVER express that to my dad though. I take doctor's notes in to prove where I've been (hell I have to do that for my attorney too since I'm still getting alimony!)

It's like I told mom, "I don't know if I'd want to work for someone/place who doesn't believe that family comes first." Luckily I think they'll be ok with this. I hope so.

So the newest diagnosis is Parkinson's possibly. Monday we should be making more appointments for more testing and possibly get a rx for dad for Parkinson's.

I'm putting another post up since this one is solely about dad & I don't want to get the next post mixed in with this one!

I Have Prayed, I Have Begged, & Now I'm just Desperate

I went to my folks' house this morning to take mom's teeth to the dentist. She lost a tooth. Down the drain. Luckily she isn't attached to her teeth so I didn't have to take her with. Not that I mind her company but she had a bad night last night. She forgot to change her oxygen tubes & so she slept without her oxygen on. Made for a bad night. She said that she woke up gasping for air a lot. Thank you God for not taking my mom last night. 

Moving on. I have prayed, I have begged, I have pleaded & now I'm flat out desperate. This morning when I went to get my mom's teeth, as I was leaving. My dad stopped me & said, "Here's my Bible, Lisa." I told him a while ago that I wanted his Bible. It has his name on it. There are little papers of places that he's marked in it whether be it recently or not, it's his. At some point those scriptures meant something to him. He said, "If anything happens to me, it's yours. It's sitting right here." I said, "Well tell mom so that she knows." He said, "I have, I've also told her my other wishes as well." He started sobbing. He doesn't want anyone fighting over anything. I refuse to fight for anything. What ever happens happens & no matter what is received or not, it won't bring my folks back after they're gone. Everything in the house could be donated to charity & it wouldn't bother me one bit. It's their wish. He sobbed some more. I said, "Daddy, if you don't have the strength to fight anymore, it's ok, you have a lot of people who will fight for you." He said, "I know." 

Today he looked so tired, so worn out. He's losing hope. None of these doctors are doing anything for him. They tell him he's crazy, he needs counseling, he needs to be institutionalized. BULLSHIT! He said, "I need to go lay down." I said, "Ok dad, lemme help you." He stumbled. His legs weren't working right. I helped him to bed. He laid down and cried even more. I said, "Daddy, did you take any extra medicine today?" I hated asked but I needed to know. He's really bad today. He said that he hadn't. I've never seen him try to be so prepared to die. He said that he's had some really bad dreams. They're about him leaving Kaitlyn. His precious Kaitlyn. I question if he would've made it this far without her. He is her reason for living. 

I got him laid down, tucked him in, kissed him, knelt next to his bed & said a silent prayer, "God, please don't make my daddy suffer anymore. Either fix him or let him go peacefully." My dad is just a shell of the man he was. It's because of the tumor. I fully believe that. 

Today is his big appointment. If this neuro says no, I fear my reaction. I really do. If he says no, we go to Iowa. If we go to Iowa I'll be setting up a benefit for him. I will need help. I'm not good at asking for help. I'll need it though. I don't know how to do it. I've never been to a benefit either so I don't even know how they work. 

If by the grace of God he gets his surgery, I'll need help then too. I'll be taking a leave of absence from work all the while hoping that I'll have a job to go back to in the fall. I'll need ideas of easy meals to make. Quick meals to make etc. Depending on how his surgery goes, I may or may not need sitters for the babies. Their dad isn't seeing them as he should and I really don't want them stuck to my side as I try to take care of the folks. I have already made them sacrifice their sports. They generally play T-ball in the Spring & Christopher was set to play Mighty Mights this fall. I explained that I had to take care of the folks & this is what family does. Sometimes we have to make sacrifices for family. Christopher's reply? "After they die, can I play then?" He meant no malice but is 9 and was honestly wondering. I told him, "Yes bug, you can play after they die." His next question? "How will they see me play?" I said, "Honey they'll watch ALL of your games from Heaven, not just 1 or 2 games a season." He was happy with that. "I'll play for them he said." Bless you my amazing son! 

I'm also looking into taking some sort of crash course classes for me to better help my parents. There are going to come times when I'm going to have to know how to get them in & out of bed. I sort of know how, but not 100%. I need to know how to do bed baths etc. All of the stuff that we take for granted they will need help with. So far I'm not finding anything so if anyone has any ideas it'd be appreciated. 

I think this is all for now. Dad's appointment is at 3:30 P.M. Today. Please send massive prayers that this doctor SEES what really needs to happen & doesn't say that he's mental. If he does I fear the future for my dad. 

~Lisa

Thursday is the Day.

Thursday we see another neurosurgeon for dad. We are stressed beyond belief. Praying until our knees are bloody. We have a lot of fear. Fear that this neuro won't take dad's tumor out. If he says no I asked mom what she would do. She said, "We take him to Iowa." It sounds so simple doesn't it? It's not. Insurance does NOT cover Iowa. It will be out of pocket. I fear for my folks' financial stability if we are told no on Thursday. If they are told no, then I have no choice but to set up a benefit for dad. There's nothing else to do.

Iowa hospital is 7 hours away 1 way. I hope and pray that dad can make the trip. I have never been so frustrated and sad at the same time. My dad is sick. We have lots of doctors and yet nobody will help him. Today, I'm praying that this neuro sees the urgency in my dad's health needs. I pray that he sees that dad DOES need this surgery to take this tumor out. Before it gets bigger. Before it takes my dad's vision away. Before it kills my dad. That's the bottom line. If the tumor doesn't come out, my dad will die. He won't see his next birthday. It won't matter if dad takes his own life or if the tumor kills him. If he takes his own life I couldn't blame him. He spends his days being dizzy, having headaches, and crying. Yet nobody wants to help him. (Doctor wise) Any doctors who agree with us don't have the ability to perform brain surgery on him. The ones who do, don't agree with us. It's a vicious circle of hell.

My dad is sick, he's got a cold or sinus infection. He's coughing a lot now. He can hardly breathe. I wonder if he'll even make it to Thursday with as bad as he feels and as sick as he looks. I dreampt the other night that I was standing over dad's casket. I woke up with tears streaming. It sucked. I'm not ready to let him go, if they fix him, he won't be ready to die. Today, I think he would be ok with dying because he is in so much pain. His quality of life is nothing. He sleeps. He sleeps to get away from the pain, the dizziness, all of it. I can't blame him at all. My dad is just a shell of the man he used to be. Yet he still tries to help whoever he can. That's just my dad.

Moving on to my mom who won't talk about herself at all. Not right now. Not with dad being the way he is. She will be having her cat scan soon to find out if this chemo is working. I hope and pray that it is. We need for it to. I question if it is though, she is having a rough time breathing & was talking the other day about upping her oxygen because she just didn't feel like she was getting enough. She's on 4 liters. She is thinking of upping it to 5.

This week was her off week for chemo. It's kind of nice to know that even though it's Tuesday, she won't be sleeping all day. I was standing behind her last night & running my fingers through her hair. Generally her hair is coarse & greasy feeling. It wasn't.. I stood there for a good 10 minutes just running my fingers through it. It was so soft. I told her as much. She said, "That new stuff that you bought for Kaitlyn, I used it." I said, "Well, it's working because I could stand here all night running my fingers through your hair!" LOL!

Between me & you, I was just thankful that she still has hair. Knowing that eventually I'll never be able to run my fingers through her hair again. Sometimes I just go in and stand in the kitchen for a little bit and close my eyes, listening to the sounds of their house. Knowing that one day, their house will be silent. I'm taking mental pictures of everything. The sounds, the sights, all of it. Then I just realize that I want them to live forever. They can't go anywhere. I need them. My babies need them. My babies' babies will need them.

I hope everyone had a great Easter.

Frustration Level has hit it's Peak.

If we could find a doctor who HASN'T LOST their compassion somewhere between medical school & actually practicing medicine we might be ok. Until then, more suffering. More suffering for my dad. More suffering for us, as a family, watching him sleep his life away. I have hardly ANYTHING nice to say about 2 doctors. I'm lividly upset. I'm German, me being upset is NOT a good thing!

A week & a 1/2 ago or so we got some amazingly good news! Dad's Tumor had grown. For most this would be devastating. For us, it was GREAT news! Maybe they'll listen!! Say it with me.. TAKE THE TUMOR OUT! That's what we NEED to happen! He was set up with a new doctor. Dr. Sibley.. or something like that. Yesterday he still had an appointment with Dr. Li (neurologist) & Dr. Murphy (heart Dr.). Julie went with him guns blazing because when my folks were at the psychiatrists office he said, "THIS IS NOT STRESS!" (Finally! someone else who agrees!) She showed her Dr. Paturi's report. There, in the report, it said, "Dad needs to be admitted to a behavioral facility." WHAT?!?!? ARE YOU KIDDING ME? That's NOT WHAT HE SAID TO US!!! He said, "It's not stress!" NOW he's recommending that dad be admitted?!?! NO! NO! NO! To top all of this off, Dr. Li said, "His tumor has NOT grown, it could be a shadow, see you in July."

I'm livid. *insert a TON of expletives.*, *insert more expletives*. Ok that should be good. BIIIIG DEEP BREATH!!! How can a doctor explicitly tell the family ONE THING & then write the complete opposite on their report? It makes no sense. My dad, feels defeated. Like the air was taken from his sails. Here, for the past week we had hope again. Hope that they could FIX this. That they could FIX him. Make him better!! Do anything to take his suffering away. That is exactly what he is doing, he's suffering. Now we're told no. Dr. Jani was wrong, everyone is wrong but Dr. Li.. BS! I can't stand her! I really can't.

Dad then had an appointment with Dr. Murphy (heart Dr.). Dr Murphy said, "DO NOT LET THEM TAKE NO FOR AN ANSWER GET THAT TUMOR OUT!!!" Ok wait, what? Really? It's like having a bunch of divorced couples in a room. They don't agree on ANYTHING! The ones that agree with us, can't take his tumor out. The ones that don't agree with us (thus far) could.

This is past frustrating. My dad is suffering. None of the doctors care. They don't care enough to find out what the problem is. We've been begging for 6 months, please, just take this tumor out. They refuse. We have insurance.. *waives the insurance card in the air*. Please. Anything. make my dad ok. They refuse. It's like being spit on every time dad leaves the doctor discouraged. My dad is a great man. He is so loving, you should see him on any Hallmark Holiday.. he gets my mom 2-3-4-5 cards because he can't choose just one. He's an awesome daddy. You should see him with my kids. He loves them so much. Yet none of this matters to the doctors. It's not THEIR dad, It's not THEIR papa, It's not THEIR husband, therefor they sleep fine at night while I question if my dad will make it through the night.

Until we find out more on the 29th.. Lisa.

Unknown Illness Possibly Diagnosed.

Dad had an appointment Monday in Chicago. That doctor wanted to send him to a balance doctor & one other doctor. I can't remember which. Anyhow, yesterday I was laying down & mom called. They had gotten a call from Dr. Jani's office. The results of his MRI were in. Dad's brain tumor has grown. It's now pushing on his sinus cavity. All other doctors are on hold now as we get him into a neurosurgeon.

Please excuse me as I have a complete melt down.

I really wish these doctors would listen to us. We've been begging for 6 months to please just take the tumor out. See if that makes him better. Just try it. Instead they all jumped on the "mentally unstable" train. It was bullshit then & it's bullshit now. He was released from his counselor after 4 weeks. Finally 2 weeks ago all of the doctors agreed that he needed to see someone in Chicago because they couldn't figure it out. How is it possible that you go to college for 15 years and can't figure out what is wrong with my dad, yet his family members have it all figured out?!?!?!?

I think when doctors go to medical school they loose some compassion. They lose something.

So now we wait again, for another neurosurgeon to figure out if/when they are going to do surgery on dad.

Mom is doing ok.. she's hanging in there. Doesn't seem to be doing any better though. I am honestly questioning if this chemo is working at all. She is getting short of breath pretty quickly. No side effects to speak of. After the red devil and no side effects I almost equate side effects with chemo working or not.

This is the latest update. Am sure there's more however the kids are being super loud this morning! ~Lisa