Sunday, August 29, 2010

Finishing the Journey

I published a bunch of posts from the past week or so that I kept private regarding the end of my Dad's journey. I just wasn't sure if I wanted them out there for everyone. Then I decided tonight that it wouldn't be right to leave them out because his journey needed a voice at the end too, even if those posts were the truest to my heart and the most personal.

Enjoy them, cry with me, remember to laugh too. My Dad would want nothing less.

He was wrapped in angel's wings and taken home last Tuesday, but he'll forever be in our home here on earth too. Love ya Dad.

Wednesday, August 25, 2010

Home

My Dad's journey ended last night at home.

Though it was too short, we had time to say what we needed to say. I know he was suffering in the end and the one thing he asked, was not to. I know it is selfish to have wanted him to stay, but I think that is what everyone hopes for when their loved ones are so ill.

I just wanted everyone who was following our 7 month battle against leukemia to know that my Dad checked up on our blog and he knew how many hits it was getting. He would tear up over it because so many people were praying for him and hoping for his recovery. Thank you. Thank you so much. We'll never know if your prayers gave us an extra hour, day, week or month, but they meant so much to my Dad.

In God's grace and peace - thank you.

Monday, August 23, 2010

hospice

Today my Dad went on Hospice.


My brothers and Mom and I went to the mortuary to make arrangements for the inevitable. We chose a walnut urn. Dad liked that.


Dad slept most of my visit, but he woke up to talk to me a little. He just said he was going to miss the heck of me and I said, not more than I would miss him. He said I had a lot left to do and that he was tired. He just wanted to not suffer and go easily. I know. He said to take care of his babies and that he wished he could watch Will grow up. He said that Quinn was a sharp kid and Lydia too. He said she'd surprise me. She always does. I held his hand, he held mine. I kissed his fist. He cried a little. I cried too. I felt like I was saying good bye and I was afraid to leave him because what if I don't see him again?


I feel like I can't get enough of him. I need to see him and touch him and be with him. When I'm not, I'm anxious and upset. I love him so much, so very much. He told me basically to go on and be happy. Be happy for him too.


I can't imagine him not being in this world. God help me.


He said everyday is a Godsend for him. Everyday a gift right now.

Sunday, August 22, 2010

Breaking hearts

When your heart is already breaking and your child asks if Grandpa is going to die, can it break any more than it already is? I don't know.


Then to have to tell your little girl that Grandpa is not going to get better and watch her heart break into a million pieces before your eyes - it only sets your heart on fire turning it into ash.


I know today was a hard day for my Mom. My Dad slept a lot of the day. He barely moved. He can't get out of bed without help to use the commode. He's weak. His voice is still good, but his body is betraying his spirit. Mom said tonight she didn't think he'd ever get out of bed again. After the day she had, I can see why. Dad had a lot of visitors this weekend. He is worn out. I am hoping he'll get a little pep back tomorrow.


I have so many things I want to do with my Dad, so many things to talk about still. So many dreams unfufilled with him. I just don't know how I'm going to let him go when it's time. I just don't know if I can let him leave me here on earth to carry his memory and not have his hugs too. I know my Mom has to be breaking apart inside. She's going to be losing her life partner, her soul mate. I know she'll ask him to save her a spot in heaven, but all the while wishing he could be in his spot here on earth for a long time to come.


I think I'm doing okay with everything and then I fall apart. It hits me like a ton of bricks out of nowhere and I am broken again. I would give anything to go back to when we were all together and happy. I pull up to my parents home now and I expect to see my Dad at the kitchen table or out in the yard. I expect to hear his booming voice and see his smile. Instead it is so quiet. It is so empty already.

Thursday, August 19, 2010

First Days of School 2010-2011

The first day of school on Tuesday meant the beginning of all the craziness this year. I am starting to feel like a pack mule and it's the third day of school today.

Tuesday went well to be honest. First Quinn got on the bus at 8:05 for third grade. She looked cute and we took all the pictures we always do. Grandma and Grandpa Vonder Haar came to put her on the bus, as they've done since kindergarten. Then the twins were off to preschool at 8:35. They were pros. It was bittersweet watching them do so well. Lydia is afternoon kindergarten, so she had to wait all morning for her shot. We picked up the twins in time to get to the bus stop for Lydia.

As soon at that bus hit our corner, she was off like a thoroughbred. She vaulted up the steps, got the first row seat and waved before sticking her tongue out at us through the window! Stinker. No tears on her part - a few on mine, maybe. Grandma and Grandpa came back to get her on the bus too - God bless them. Everyone took pictures - the paparazzi was practically there.

Everyone got home okay too and with excited banter competing for air space between everyone, they devoured the first day of school cookies we always have to have. It was a good thing.

We're nearly through the first week of school and I have to say it's been almost pretty normal. I'm trying really hard to keep it that way. The kids are all doing beautifully and managing the different schedules so well. I'm super proud of them. : )

Saturday, August 14, 2010

Home part II

Dad won't be home until Monday now. He will be coming home on support care instead of hospice. At least, that was the latest. It changes moment to moment.

Friday, August 13, 2010

Home

Dad will be home tomorrow on Hospice.

Please call before visiting, although, I know he wants to spend time with everyone.
314-839-9880.

Send cards to my parents, 1420 Pepperhill Dr., Florissant, Mo 63033

Send Prayers to God.

Thank you for following my Dad's journey to this point. You will never know how your support carried us through.

From here on in, I won't be blogging regularly, or at all, regarding my family.
God bless.

Thursday, August 12, 2010

Biopsy Results

The biopsy came back with 30% blasts. The leukemia is back. There is nothing else that medicine can really do right now.

We'll be making arrangements as soon as possible to get Dad home. Don't know when that will be.

It's time to just concentrate on loving each other the best we can for as long as we can. Please pray for us on this journey.

Tuesday, August 10, 2010

7th Bone Marrow Biopsy

Mom figured out that today would be Dad's 7th bone marrow biopsy. I ended up being there when the doctor came in to do it. I was glad I could stay and see what happens. It's no picnic, let me tell you. It's amazing how stressful it can be even when everyone is doing their job and it's going well. It's just the worry about how Dad is feeling and if it will turn out in our favor. It all affects you.

Dad came through just fine and the Doctor did a great job. They got a really good sample of bone and marrow. Hopefully we'll have results - and results that we want - late tomorrow or Thursday.

Ramp up the prayers tonight people - you are helping us with each and every one.

More tomorrow!

Monday, August 9, 2010

Dad - the Anomaly

Dr. Westervelt came by this evening and told my parents that he fully expected to return today and be in a position to offer very few options to my Dad, but that didn't happen. My Dad's condition is an anomaly. Normally when someone relapses their white cells skyrocket and it's all down hill from there. My Dad, however, had evidence of blasts on Friday and now there are none. His bloodwork which took a turn on Friday is returning to more normal levels.

The Doctor didn't want to get any of our hopes up, but I think he felt really good about being able to offer hope and encouragement considering what is going on. They are planning to do a biopsy tomorrow on my Dad and we'll have results on that Thursday. It will tell us, for sure, if the leukemia has returned. I am hesitant to even feel optimistic, although everything in his bloodwork says I should be.

They also started him on those new drugs this evening to help with the GVHD. We need that condition to remain the same and improve. Dad will go on a TPN (nutritional) supplement IV tonight as well and they actually make each mix to suit the patient. My Dad's mix will be a high fat concentration since he's lost so much weight.

If we can just get the nausea under control and he starts to eat, he'll start to have energy and feel better. He will be in the hospital this time until he resumes a normal diet, so it will be through this week and probably next.

Feel free to call, send cards, visit. He's in room 6902. 314-747-6902. If nothing else, it's a distraction.

As always, prayers and good thoughts are all we ask for. They must be working.

Monday

I am feeling like an unreliable source of information because what I am going to relate is completely opposite of what I've been relating the past couple of days. I swear I am not making this stuff up. I sometimes think the Doctors make stuff up, but I promise that I'm not.

We should know more information this evening, but at this point the doctors think that Dad does have stage 2 GVHD (on a scale of 1-4, one is the best). They also are confused because his platelets have returned to normal and if he had relapsed that wouldn't be happening. To coincide with this, he has no blasts in his bloodwork (remember this is peripheral blood, not bone marrow).

From what we could gather, it seems they want to add two new medications to Dad's regimen to help with the GVHD and they are ordering another bone marrow biopsy to see what is going on in them there bones of his.

They are putting up a TPN bag tonight which is intraveneous nutrition and he needs magnesium and potassium, but no blood products. That is good.

I took away a lot of fuzzy feelings from this news because it's a complete 180 degrees from where they had us on Friday. I know we're far from in the clear, but I am cautiously optimistic once again.

I will know more after Dad's regular doctor stops in on rounds this evening.

Until then...

Sunday, August 8, 2010

Sunday

After spending a couple hours at the zoo with the kids and Carl, I ran over to the hospital to see Mom and Dad for a couple more hours.

Nothing has changed from yesterday. Dad's numbers are bouncing around a bit and actually went down a tad today. Nothing drastic though, which is what I tried to tell my Mom. We're so focused on "numbers" all the time because it's the only indicator you have of what is going on inside Dad's body.

The floor doctor must have come back in at some point this morning because she told them that sometimes immature white cells escape the bones and float around a person's system disguising themselves as "blasts" (which are the leukemia cells), when really they aren't. Again, yesterday, Dad's blasts were at 1 - which is really low and consistent with the day before. It's very strange. The floor doctor did say that tomorrow, Dr. Westervelt (Dad's main doc) will be back and hopefully will have a plan of treatment for what we are dealing with now.

Dad's viral infection in his esophagus is better than the GVHD but still a challenge because as I am used to hearing at the pediatrician's office, "a virus has to run it's course". Antibiotics don't help with viruses, only bacterial infections.

In the meantime, Dad is still suffering nausea related symptoms and fatigue. Today he was very fatigued compared to yesterday when he seemed to have a little more pep to him.

More tomorrow! Enjoy your Sunday afternoon.

Saturday, August 7, 2010

Settling Down

Everytime we have bad news, we all freak out for a day or two and then settle down a little bit. I got to visit Dad for a long time today and he sounds good. He is trying to eat, even if he can't keep much down, and he's trying to move around more.

A doctor came by this morning to see my parents and relayed preliminary results on Dad's biopsies. It looks like Dad's lower GI is fine. They said he has a viral infection in his upper GI, but that they don't think what they are seeing is the Graft vs. Host (GVHD) Disease. This is great news although Dad was hesistant to embrace it. Dad asked about his blast number and the doctor said strangely enough, it was at 17 and then yesterday's results were at a 1. No explanation for that. The fact that there are blasts is not good, but having both GVHD and blasts, is worse.

The doctors are all reluctant to relay too much because there are some tests still out, but I'm hopeful that the remaining results will only be in our favor. This entire episode really reinforces the whole idea that doctors are only practicing medicine. Everyone said it was GVHD and now it's not! Dad even said, if it's not GVHD about 100 doctors here are wrong. Makes you wonder. It is a teaching hospital - hopefully they are learning something here.

Please feel free to visit and call next week. I think we are all coming through the shock of this upset one day at a time. It's like a roller coaster. Up and down. Up and down. When you get to the loop di loop, it just throws you for a minute, and then back to the up and down.

As always, prayers, thoughts, wishes on lonely stars in the sky - all are welcome. Thanks for checking on us!

Friday, August 6, 2010

No Title

Talked to my Mom this morning.

I'll be straightforward, maybe it will come out easier.

Dad has blasts in his blood work - that means the leukemia is possibly back. They are running tests on the GVHD to see what level it is at, if any. If it is accute - or severe, the prognosis is dire. If it is something else causing my Dad's symptoms, they will begin backing off of his immune suppresant medications in the hopes that the donor cells will fight the leukemia off and anything else going on. The should have results on the outstanding tests Monday.

I think our goal right now is to get Dad home where he belongs - so we have to work on getting him strong enough to do that.

Please don't call right now, we are all processing this new information and my parents are, especially.

Thank you for your continued prayers, your continued faith, friendship and love.

Thursday, August 5, 2010

Evening update

We met my Mom at the Muny tonight for "Footloose" and she shared some not so great news. Apparently Dad's numbers have been dropping - drastically, today. That means his blood cell counts, platelets etc. which had been holding steady, started falling. I didn't realize that this was a bad sign, but thought it was merely a sign of his condition with the GVHD. We don't have any specifics or details right now. They are running some more tests.

Dad's doctor, who's been with him all the way, actually came in to talk to them tonight, which is not usually a great indicator. Mom didn't want to elaborate further at the Muny, so I will talk with her more tomorrow. She was understandably upset. From what I can infer from her and the fact that Dad's counts are suffering, I am anticipating grave information.

Please pray for my Dad and for my Mom. For all of us. Thank you.

Thursday

We still have no definite answers, but they are speculating that Dad's condition is related to the GVHD (graft vs host) and I think they are talking about proceeding with that course of treatment. That means, Dad will be in the hospital another two weeks. : (

On a side note, now his counts are starting to drop and we don't know why that is. The doctors were on rounds when I talked to my Mom a few minutes ago and I should learn more later today or tonight when I see her.

The upside to today, if there is one, is that Hayden FINALLY went on the potty. HIP HIP HORRAY. It's the little things in life, seriously.

Now I hope she just keeps going on the potty. What the odds?

Wednesday, August 4, 2010

Scopes

So...today is my Mom's birthday. Yeah! Sherry and I went to the hospital to take her out for lunch today and we all had a nice visit.

Then I went up to see Dad for a bit. The gastroenterologist (sp?)came in while I was there and they are going to "scope" dad from both ends today and take some biopsies to see what is going on. They are looking for infections, GVHD (Graft Vs. Host Disease) and any inflammation etc. I am really hoping they find something and can fix it.

If there is a good side to all of this, it is that Dad's overall numbers are great and his vitals remain constant (i.e. blood pressure etc). Now, we just need to get rid of the rest and get him eating again.

We should know more in 24 hours.

Pray for the best!

Tuesday, August 3, 2010

Dad's back in the hospital

Dad went to his clinic appointment today and he is still suffering from nausea and stomach upset issues. The doctor was very concerned about his lack of energy and just overall condition. He checked Dad back in the hospital to just figure out what it going on. It could be an infection. It could be the graft vs. host disease rearing its ugly head. Who knows?

Dad's numbers are looking really good still, so he is still in remission, but these other factors are not helping him enjoy it. Hopefully we'll figure this out quickly and he can go back home.

Tomorrow is my Mom's birthday. If you think about it, call her or send her a card.

I know Dad's in the best place and apparently he wasn't upset about checking in - so he must be feeling like scum. I feel so bad for him.

Keep us in your prayers. We know you do. Hopefully this roller coaster ride will be a quick one and we can move on to bigger and better things for all of us.