Some days, I have no where else to go but into the blank page of a new blog post that just welcomes my tears and sadness. It doesn't judge me or try to comfort me, it just lets me get it out and move on to the next minute.

I find that the closer I get to Christmas, the more I'm blubbering. Every little thing sets me off. A Christmas card that someone writes in. A commercial. A news clip about a Dad surprising his daughter in school arriving home from deployment. It all hits me.

I am so blessed. My kids are so psyched about Christmas. It's awesome. They all "get" it this year. It's going to be a great morning.

I wish, with all my heart, that the only thing waiting for me on Christmas morning was the phone call from him wishing us well before we get together to open gifts later in the afternoon. We used to call in the morning and wish each other Merry Christmas. He loved Christmas.

I know so many people struggling this Christmas with family illness and job loss, countless other things too - and I'm not belitting those worries, they were mine and some still are, but if you have a loved one with you this season - be so thankful, be so grateful for the time you have with them. Don't think about what might happen, what could happen next year, just love them and be with them. Enjoy the moment. I would do almost anything for those moments again.

They always say the first year of "Firsts" is the hardest. I'm beginning to see why. There are a lot of times I have to remind myself that he is gone. There are so many days, I go about my business and it hits me that he's not there to call. I talk to him in my head all the time. Crazy? Probably.

I'll continue to blubber and I'll continue to talk to my Dad in my head and I'll get through Christmas. Not only "get through", but enjoy it. I'll enjoy my kids. Dad would expect no less. He would probably be mad at me for getting upset right now. He would say, "come on kid, buck up!". Gonna do that, in about two more kleenexes.

Christmas Letter 2010

Dear Friends & Family,

In a year so filled with ups and downs culminating ultimately in extreme grief one late August evening with the passing of my Dad from leukemia, we struggled with what to say this year, or to even say anything at all. So, with that, we debated on this letter. Carl offered to write it for us and I was conceding. I wasn’t sure what good was to be remembered about 2010, but upon thinking more, I realized, there was so much. So many blessings to recall, so many people to thank, it was a year full of unexpected sadness coupled with a year full of love and generosity, faith and friendship. So, here we go.

Quinn turned 8 in February, a week after my Dad’s diagnosis. She continued in dance this year, made her First Communion with all her family and Grandparents present in May, joined the Fenton Swim team and had her dance recital in June. She played softball again, too. In August, she started third grade and volleyball right after that. Her latest sports endeavor is basketball this winter. She has grown into a tall, tweenie bopper with bangs that are growing out and in her eyes (just to drive me crazy). I’m sure, she will continue to “delight” us in the coming year.

Lydia turned 5 in May. She also continued in dance this year having her recital with Quinn in June. She played softball for the second year in a row and took swimming lessons this summer. In August, she started kindergarten! She continued speech twice a week at school and also became a Daisy Girl Scout with Mom as one of her leaders. She never ceases to amaze us as she grows into such an independent little girl.

William and Hayden turned three in July. We visited Dad that day in the hospital so he could give them their presents. They took swim lessons this summer and got carted around to softball practices, swim meets and the like – as usual. In August, they started their second year of preschool and they LOVE IT. William also continued in a speech program. They started Dance with their big sisters in September. Who knows if William will continue into the next year with it, but he has enjoyed it so far. They are growing up way too fast for us!

Throughout this year, we’ve had friends and family helping us to get by – babysitting for us so we could be with my Dad as much as possible. We’ll never forget those gifts because it gave us such a treasure - time. People prayed for us, for my family, sent their blessings, sent cards, called, brought food, and visited. In life’s journey we all struggle with various circumstances, but to have a year like ours from the start and to end with the joyous and blessed season of Christmas, we feel a little like the wise men searching for a star, wondering what will happen to us next, and asking where do we go from here; a little lost. We choose to focus on the blessings of the season and more than anything, the love we have to give one another, here and now. My heart is comforted knowing that my fiercest guardian on earth is now in heaven. My Dad, is watching over my children throughout their days now, so in closing we say God Bless, Merry Christmas. We wish the spirits of your past to visit you this season bearing gifts of glory from heaven, memories of wonderful days gone by, and hope for the future. I know my Dad’s spirit will be with us throughout. Love ya, Dad.

Dear Blog

Dear Blog,

I have not abandoned you. It may seem like it, but really I've been ignoring you like my three year old does when the TV is on and he's watching Dinosaur Train. I haven't really been inattentive, you've been in the back of my mind lately, but I've been busy.

I've had friends having babies, kids running to and fro and the onset of the holiday season has stripped me of my free time to write with you. On top of that, silly me, I thought we could redecorate the three kids' rooms and move the four of them all around. What a silly notion!? My upstairs looks like a tornado hit.

Decorating for Christmas may not even happen at this rate. You should not feel too bad, though, I've also been ignoring my craft addiction and all the projects I thought I would have time for this year too, especially for gifts. Oh well.

Today, I'm doing laundry in droves and in slips thoughts of my Dad to wreck my okay mood on the eve of Thanksgiving. I'm not feeling too thankful, but I know I have a lot to be grateful for.

Let's go with that.

I'm thankful for...

My kids
My husband
My family
My dog
My faith
My friends

Well, that's it for now. Hope to see you before 2011. We'll see how the month goes from here.

November already and 2010 can't end fast enough

Ever feel like - How did I get here already? I mean, where did my year go? I can barely remember yesterday and I wonder where did the 10 months before it go?

Trick or Treating went great! The kids had a lot of fun!

I feel like the next two months will fly by and as much as I kind of wish they would so I can just "get through" it, I also have so much to do, that I need MORE TIME.

I guess everyone feels like that with the holidays. I wish I could be more excited for them and more geared up to go out and spread cheer, but I could really care less right now.

Hopefully, I'll find that Holiday spirit somewhere along the way.

Maybe it's too early still.

I have a lot of prayers going up lately. First - my friends with cancer in their lives (whether it's their own or a relatives) - all my blessings and prayers to you. Second, and as importantly, to my friends the Welsch's - God Bless that baby you'll be bringing home soon! Can't wait to hear about your son's arrival.

The only funny story I have to relate was Quinn's Saint presentation she gave on Monday in PSR. She chose St. Elizabeth of Hungary. She insisted the Saint was St. Elizabeth of the Hungry because she fed the poor. It took all my convincing to get her to believe Hungary is a country and that's why she is "of Hungary". Her report even had that in it ! The main reason she chose her was because she was a Princess and it's my middle name. It was pretty funny, though!

November Blessings to you!

Raining

It's been two months and I think it gets harder the further from that moment I get. I miss him. I miss seeing him at his house. I was there last evening and as I do when I go there, I go to my parents bedroom which is the last place he and I spoke and the last place I saw him. I stand there everytime waiting for something. His ashes are on his dresser (for now). His photo is throughout the room. I can still see his form in bed asleep or talking with me, but he's not really there. Before I know it, the tears are falling off my cheeks while I'm lost in thought. I want to feel close again to him. I want him to say, "come here!" for a hug. I want him to be here.

I just want my Dad.

I'm glad it's raining tonight so the full moon isn't visible. Full moons and cool evenings bring back the moment I walked out of the house to go home the night my Dad died. I looked up to the brightest, fullest, globe in the night sky and felt the cool breeze of a storm coming across my face. It's one of those moments you never forget. I remember thinking maybe my Dad had something to do with the change in the weather and the wind was his good night kiss to me across my cheek. Crazy.

Damn disease

I kind of feel like I'm being bombarded. I'm playing a game of Battleship and all the ships around me have been hit and I'm waiting to be torpedoed. Who am I kidding? I've already been hit, but my ship hasn't quite sunk yet.

Cancer.

Damn disease.

I am praying for all my friends fighting it, for all my friends with loved ones living it, and for all my family who have succumbed to it. God grant us peace from this illness.

Not a very cheery post, but I think every diagnosis I hear of hits me hard, brings me back to my Dad's diagnosis on February 3rd - makes me relive my loss. Selish? Probably.

I miss him.

Tomorrow is Grandparents day at school and my kids are blessed to have three grandparents attending. I just wish it was four.

Post on demand

My fans have requested an update and so I must oblige! Ha ha ha!

Here goes!

Sunday, Quinn bit into pretzel and jarred her lower incisor loose. It was a little wiggly to start, but she really popped it eating that pretzel. All day, she couldn't leave it alone and finally on Monday morning, she yanked it out. She said she couldn't stand going to school with it hanging in her mouth. Great! Monday night she told me to remind the tooth fairy to come and she placed her tooth on her dresser with a note. I told her, "No worries! I'll tell her to stop by!".

Of course, the dang tooth fairy forgot to come! I think there is probably another post somewhere in my blog about this darned tooth fairy forgetting at least one other time. I told Quinn we needed to fire her then and I guess I was right!

So, Quinn gets up Tuesday very disappointed that her four quarters are nowhere in sight and the knarly tooth is still sitting on her dresser. Thinking fast, I told her, "you know what? It frosted last night. I am betting that the tooth fairy's wings weren't up to speed because of the frost, so she didn't get all her teeth picked up." I went on and elaborated, "you know how wasps and bees can't fly at night because of the cold. Same for tooth fairy's!" She seemed to buy it. I said, "It's going to be nice and warm today. I bet she makes up her flight pattern and stops in sometime this morning or afternoon before you get home from school." Quinn said, "really?" and smiled. I said, "Sure! I have errands to run , so I bet she comes while I'm gone!" Sure enough, that tooth fairy did come while I was gone (wink, wink).

Quinn got home from school and checked on her tooth, found the quarters, and exclaimed, "MOM! I know you're the tooth fairy!" I said, "What?!" very incredulously. She said, "I wrote her a note and she wrote back. There is no way the tooth fairy could hold that big pencil and write so big on my paper!" I said, "Hey! You believe in magic, right!?" and she said, "Yes." and I said, "Then I am not the tooth fairy!" and left it at that.

We have had many talks about the tooth fairy and how we have been assigned the cheap one. We haven't figured out how the routing works at tooth fairy world, but it seems there are some weird boundaries on our street due to the variation in rewards given for each tooth collected. Our poor tooth fairy has had such a bad rep for so long, my kids just believe we got the slacker.

Oh well, when you're keeping up so many persona's (i.e. Santa, Tooth Fairy, Mom, Chauffeur, Girl Scout leader, Great Pumpkin, Leprechaun, and Easter Bunny), one is sure to suffer!

Have a great weekend!

Hugs and prayers to all who are fighting cancer in my life. You are always in my heart.

10:45 pm - Mind Racing

I am so tired but my mind is racing I can't go to sleep. So, I'll blog for a minute.

Tomorrow is a month since my Dad passed. I thought I was doing okay, but having just surfaced from falling apart for a bit, I guess I'm muddling through. I miss him so much. I can only imagine what my Mom is feeling. She's so strong and doing so well - but I know she is tired and grieving too.

Tomorrow night she and I are participating in the Light the Night walk for Leukemia at Forest Park with another family from Quinn's school who lost a relative in July to Leukemia. It's our way of doing something good on the one month anniversary of something sad.

I feel like everything in my world is a little off kilter right now and the more I try to take control, the worse it gets. I tried to get more involved in my church by volunteering and that didn't exactly work out. I volunteered to help with Girl Scouts for Lydia and that's now a complete cluster. So instead of preoccupying myself with new adventures, I have a lot more chaos going on. I know in another month, hopefully, things will look better and calm down a bit, but right now, it all seems pretty messy.

I hate messy. I like order. I know kids are messy, life is messy, but in my world, messy doesn't jive with my schedule. I have no time for messy.

I sound ridiculous. Lately, looking at myself and seeing who I am, I'm not entirely happy with it. I can do better. I am a good person, but I know I can be better. I feel like I have no time to work on me and that is frustrating too. How do working Moms do it? How to they balance all that I balance and work? It's a mystery to me. I can barely hold together what I do have up in the air right now and I think, someday I'll have this and work too. What is going to happen then? I guess, I'll survive and be pretty messy!

What is Up

Here's what is going on in our world lately.

Quinn is gearing up for her first Girl Scout camping trip next weekend. She is loving volleyball and doing really well in third grade. They are learning directions and continents. I don't think I was learning that stuff in third grade.

Lydia is getting ready to start Girl Scouts in a week or so. I am a co-leader to her troop, so we're both going to be learning a lot! She is doing great in Kindergarten and has a new found love of writing letters - all letters, in any order. Then she asks, "what word is that?" Usually, it's something like "xehditeofj" and I say, oh! That says, "I love you!" or something. She's cute, but she gets herself in so much trouble lately at home. I can't keep up with her.

Will is a little under the weather the past couple days, but otherwise his crazy busy. He goes to speech four days a week and preschool twice a week. That all keeps him going.

Hayden is my little bug who just goes with the flow. She gets dragged around town for her brother's speech and her sister, Lydia's, speech as well, not to mention sports and scouts. She has developed a huge fashion opinion and can take 5 minutes to pick out a dress for the day. Talk about driving me nuts!

Next Friday Mom and I are walking in the Light the Night walk to benefit leukemia and all blood cancers. We have joined a team of one of Quinn's classmates this year - who lost a relative in July to leukemia as well. Next year we will probably have our own team, so look for that info next summer!

We're all managing our worlds without Dad in it. Will has a hard time especially understanding where his PeePa is. He had an appointment at Childrens' this week and the past two times we went for this appointment, we saw my Dad at Barnes next door. So....naturally he asked when we got there if we were going to see him. I said, "no" and he asked, "why?" and I tried to explain that PeePa is in Heaven with Jesus. He gets more confused the more I talk. Then he asks, "PeePa sick?" or "I no see Peepa now?". It breaks my heart everytime we have this conversation and there is no good way to have him understand. I am afraid he thinks PeePa just left him and he feels abandoned. He loved my Dad so much. They were going to be buddies growing up for sure. I just knew it. I hope he keeps my Dad with him forever.

Okay, off the Dad subject. I am not going to dwell.....it will be four weeks on Tuesday.

Twinkle Toes

Last night was the first night of dance class for the three girls. They were so excited and got to the studio, changed shoes, and rushed in to their classes - leaving poor Will in their dust. He was not happy. He got upset in the hallway of the studio wanting to go into Hayden's class with her. I talked to the teacher, also the owner of the studio, and asked if he could just try the class out and see how he does. She said, "of course!".

He loved it. He did everything they asked, paid attention, waited patiently when he had to and ran, jumped, danced and leaped to his heart's content. So, I guess we're going to have four dancers in the family now. I need to get him a shirt that says, "Dude, I dance." or "I love dinosaurs and dance" - something cute and manly. I know if he continues, I'll have to get some manly shoes because pink ballet and tan tap shoes from his sisters aren't going to cut it.

It was adorable and I never thought I would have a son in a dance class, but it is really good for his clubbed feet which give him some balance trouble and coordination issues. Oh well - Fred Astaire eat your heart out.

a fortnight

Tomorrow will be two weeks since my Dad's death. It was the end of his journey, maybe, but the beginning of a long one for the rest of us here. We are all feeling our way without him. I am really lost as to where to go with this blog even. It's been devoted to him for so long. I know the antidotes about my kids are as amusing, but even relating their stories right now seems so trivial. I know, trivial gets us through. It makes us laugh. I do laugh - a lot.

I guess we all keep doing what we always do - the daily ins and outs of life, but all the while, in the back of my mind is the fact that he's gone and when I don't dwell on it, I can forget and still trip myself up with - I have to go to the hospital today or give Dad a call - then I remember and the floods burst. I feel pretty out of control.

I miss him. I do - so much. I can hear his voice in my head and I laugh, I smile at what he says to me. It sounds crazy. I have accepted that I can't change this and I can't go back - only forward, but I wonder a lot how well I'm going to be able to do that.

Today is labor day, the end of summer. I remember at Memorial Day seeing Dad in the hospital and then at July 4th, the same. The three patriotic holidays of summer have come and gone - so has my Dad. Now Fall, looms. I usually love that season and relish the change. Right now, it only beckons the holidays and a box of kleenex.

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.

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.

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.

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.

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. : )

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.

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.

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.

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!

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

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.

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!

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.

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?

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!

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.

It's a brand new day - 2

Dad's result yesterday was amazing, overwhelming, unbelievable.

I am still crying about it and as relieved as I am, I am also freaking out because now I feel like we wait for it to come back. This monster lurking in his veins just waiting to strike again at him, at us. I actually let my mind wander a little yesterday and believe I could imagine having Grandparents Day with my Dad at school this year and a birthday with him, holidays, maybe a vacation. I am afraid to entertain too many future events because what IF, that demon rears it's ugly head again and disappointment, dreams are destroyed.

This disease is an awful curse. Only the steadfast, the brave can even attempt to take it on. It's fierce. As strong as we all are, as courageous, I just hope it's enough.

I have prayed and begged with God to give me time. 10 years, what is that in the span of a diety. I just need time and I need relief to build memories with my Dad for my kids. I feel like the Lord has given us this reprieve and I want to make the best of it. I hope it lasts. It just has to.

It's a Brand New Day

Last evening before I was headed out the door to a girls' night out, my Mom called. It was a very unusual time to call and I knew she was on her way to the Muny, so of course my heart jumped in my throat. I said, "Hello" and she said, "I wanted to call you with some good news for a change." and I knew it - Dad's biopsy came back clean.

All week, I had forced myself not to even consider any other result. I just knew in my mind and heart that we'd have good news. It just couldn't be any other way. But actually hearing it...I didn't expect to feel so emotional. I hung up with my Mom and started crying. I guess I must have been burying all my worries so deep they finally bubbled up and out of me. It felt good and scary too.

I know this is just one step in a long journey for us. But it was huge. Dad's meeting with his doctor this morning and I am guessing they'll continue with the same plan. He'll still go in for blood work a couple times a week.

Keep praying, keep the faith, thank you for your love and support. : )

Now we wait

The biopsy went really well today. Those things can be really uncomfortable, but the doctor who did it, was really good Mom said.

Dad's next appointment with his doctor is Friday. I don't expect to hear any results until then.

All things considered, we're all handling this very well. I'd say on a scale of 1-10, our anxiety levels are about a 20. : )

Keep the prayers up, keep the well wishes up and keep up our positive attitudes. That's half the battle.

More Friday.

Shot in the Butt

Dad's having a bone marrow biopsy tomorrow morning to see what's going on inside. Cross your fingers, say a prayer and do whatever good luck thing you do for us. We may have results tomorrow, but more than likely, not until Friday (Dad's next appt).

The doctor is very positive that things are going the right way, so let's hope that he's right! He just wants to see what's happening.

Come on donor cells, do your thing!

It's a brand new day

We got back yesterday from our camping trip. All was good. WE got a little wet, then drenched, but we all dried out. We had some colorful experiences along the way and some adventures. The kids got an earful, eyeful and an education in just PEOPLE this weekend, but that was okay too.

Dad has his first clinic appointment today. I think he had an okay weekend. Mom said he was much more active on Saturday than Sunday, but he probably had some adrenaline running through him from getting home. We should know more about a course of treatment after today, so we'll see what happens.

Thanks for checking in! We'll get you more info as we know it.

Have a great day!

Day 28 - Going Home

They said it would be a stay of about 28 days way back on day one! They were right.

Dad's homebound this afternoon.

He has a lot of work ahead of him and I think they will be sending a Physical Therapist to the house for some of it.

There was scuttlebutt about doing another bone marrow biopsy soon to see how things are going. That will be another stressful hurdle to wait through.

Keep praying, keep the faith.

For right now, today - I'm just so thankful to have a good end to a very long and turbulent week. It's also Carl's birthday, so what better gift than to have everyone in the family home.

We're off to camp! Wish us luck!

Day 27 - Not there yet!

They hooked Dad back up to IV fluids this morning because he was dehydrated. His blood work was looking so good and then it dipped yesterday, probably due to the lack of hydration. He was at 3.1 WBC and 2700s on the ANCs - both good.

So...one more day in the hospital. He is still having tummy troubles and some nausea, but some of that, I think, is having all the medication they give him on an empty stomach. What do I know, though, right?

We are leaving tomorrow to go camping for the weekend and I am hoping when we get back that Dad is settled in at home.

Have a good weekend and many blessings!

Day 26 - So close, yet so far away

Dad spiked a low grade fever today, so they are keeping him another night to monitor it. Hopefully, he'll be gettin' out of the joint tomorrow sometime. More later.....

Keep your fingers crossed!

Day 25 - Almost Home

The word of the day was that they are booting Dad out of the hospital tomorrow providing some tests come back good in the morning. YEAH!

He is trying to eat and he did get up a little more today, although, he fell asleep a lot too. I think going home will help him get some motivation and energy going, I hope.

I know he is scared about going home, though, too. That probably sounds a little weird, but the thing is at the hospital if something goes wrong, they're right there to help. At home, it won't be that way. He's just nervous. He was nervous last time he went home too - or rather, the first time he went home, way back when. After putting yourself through so much agony, it's a struggle to really get back on your feet.

I just hope some things can return to a semi-sort of normal for a while. I know they want to do another bone marrow biopsy - maybe next week. That will be stressful to get through, but once we're over that hump and (pray to GOD) get the GO that he's clear, we can potentially relax a little bit. Dad will be going to the outpatient clinic a couple times a week for a while, then once a month from then on.

As Dad's doctor always says, "we're cautiously optimistic" about where life is leading us at this point.

Pray for us, pray for my Dad, pray for my Mom and we'll pray for you.

Day 24

It's Monday on another week in the hospital. Ugh. The good news is Dad's WBC went up to 1.9 yesterday and his ANC was at 1558! The Doctor told him this morning that if Dad was up moving more, walking around, and eating, he'd be going home TODAY. Of course, he's not doing those things.

When I got to the hospital at 2:00, the P/T was trying to get Dad up and walking. It took about 20 minutes to get Dad out of the room and then he did one lap around the hall with two rests. Considering he hasn't left the room in two weeks, that was pretty good. Of course, the P/T suggested he take another walk this evening - doubt that happens.

Dad's still barely eating - he falls asleep sitting up and just seems so withdrawn. Mom had it out with him this morning apparently just trying to tell him to get up and do SOMETHING so they could get the heck out of the hospital. Dad just sits there and looks at her. I can only imagine what he's thinking inside. I'm sure it's something like, "You don't understand! You're not sick! You try to get up when you feel like I do!" He's just lost some of his sparkle and the twinkle in his eye is barely a flicker right now.

It's going to take getting through this emotional valley he's in to get through the physcial one. But, while we do that, it's really wearing on my Mom and the rest of us too. The radiation really just wiped him out completely and I think just struggling through the past 5 months has taking it's toll.

Pray for the sparkle to come back soon for my Dad. Thanks for checking in today! : )

Day 23

After a busy weekend, we are back home this evening from Kansas City and a really good time at Carl's cousin's wedding.

All weekend, I checked in with Mom about Dad and the reports were good. His numbers continued to rise. His platelets, hemoglobin and hematocrit numbers also continue to hold and in the platelet's case, improve! As of yesterday, Dad's white cell count was at 1.2 and his ANC was in the 900s. He needs to be at 1000 for the ANC to even think about going home. Apparently his physician told him maybe in 3-4 more days he could go home, but he had to continue to try and eat, move, exercise and just stay stable.

Well....this afternoon, I guess, Dad was in the shower and his heart started acting up where he could feel it going a-fib (atrial fibrulation). He got out and had a little dizzy spell and of course, called the nurses. They all freaked out and now he's a little nervous about everything. Personally, I think it is anxiety triggering it and his lack of food intake etc, but I'm not a doctor.

Yesterday, I know, Dad was up and trying to walk a bit and exercised on the stationary bike for about 10 minutes. That alone wore him out.

I am going up to see him tomorrow afternoon, so I'll see how he looks then. Mom just said everything on the inside with his counts is doing what it's supposed to, now he just needs to be feeling a little stronger to do what he needs to in order to get out of there.

I can't wait for him to come home this time! I'm hoping for later this week, or at the latest, the weekend! That would be a great gift!

Talk to you soon!

Day 20

Dad's WBC hit .5 today - yeah. I don't know his ANCs for the day, but his platelets doubled and the nurse said that was really good because those are usually the last thing to improve. Yesterday's ANC went down a little from 160 to 150. Dad didn't have any bands which is confusing because he had them on Tuesday - where the heck did they go?

Anyways....my visit today was pretty uneventful. Dad was very quiet, pretty tired and just grumpy, really. Not that I blame him one bit for feeling blue. I just wish a little of the good ol' fighting Irish man we're used to seeing would resurface. He did get a little spark in his eye while I was relating a story about the twins which was funny.

He's still not eating and they have him on IV fluids and a ton of other stuff. His mouth sores are improving, but he's still uncomfortable. He still has nausea off and on too.

When I left he gave me a tiny wave with his pointer finger on his lap while he dozed, so I knew he realized I was leaving.

I won't be able to update until Monday as we're heading to Kansas City for a family wedding tomorrow.

Please keep us in your prayers as you have done. We are so thankful. If you think about it this weekend, send my Dad a card. Thanks!

Day 19- Star Bright, Star Light

Dad was battling some nausea today while I was there. It is just miserable - he's miserable....

The Happy Dance continues a little - his WBC count went up to .5 today and I haven't heard about his ANC level.

Dad was diagnosed with pneumonia yesterday. That's very scary to me, but they seem pretty non-chalant about it. He's on a couple antibiotics now and a steroid, I think. I get confused about all the meds. There are so many. Hopefully, the white cell count and ANC counts will start to help work against the pneumonia too.

Dad was trying to watch Invictus today and was dozing in and out. I think he was getting annoyed that Mom and I were chatting as he was watching. Girl talk, what are you going to do?

He was a lot more alert than the last couple days, so that's a good thing. He's still lethargic and weak, but more alert.

Keep us in your prayers now, especially. It seems like these past several days have been some of the darkest yet. I am missing my Dad's sense of humor lately. He is just not himself. Please send up wishes too, find that lonely star tonight and stick a wish right on it for us. Can't hurt, right?

Day 18 - just a little happy dance!

When I visited Dad today, I have to say, there wasn't much to have a happy dance about. He could barely open his eyes, he was so tired. His body is just plain worn out and working so hard for any energy at all. Mom was completely frustrated with him, with good reason, but I really think Dad just couldn't DO anything about his condition. It wasn't lack of will, just lack of power.

The nurse even said she thought this lethargic episode we were going through was a result of his low WBC counts and just his body fighting everything with all it's might. He is on oxygen which helps move the red cells through, but even those, he's had refilled a couple times this past week. It's all a biproduct of the transplant, the chemo, and the radiation.

All that aside, I had a nice visit with my Mom. Tonight she called and said that FINALLY, Dad's WBCs took a little leap - they hit .4 and he got some ANCs on the board - 160 to be exact. That should all start to help Dad out with his energy, his appetite, and his overall condition. So, that's where the little happy dance comes in. We're starting to see his cells make a move. Now, we just hope those donor cells are doing their job and we'll all be good!

God Bless, goodnight, have a good day tomorrow!

Day 17

I hope everyone had a safe and Happy Fourth of July!

We had a very slow day and I think the kids enjoyed just doing NOTHING. We've been on the run since I can remember.

Dad was very tired yesterday, so I know he didn't want much company. He and Mom just hung out and I think he dozed off and on all day. I don't think there is much new to report. We are battling his lack of interest in eating, or moreover, my Mom is battling it. It drives her nuts. Dad just says everything tastes weird or bad, so he doesn't want it. That combined with just all the anxiety and I really think, depression, makes for a grumpy Grandpa. I can't blame him. We are all reaching a breaking point for sure. It's been so long and really, just so long without any GOOD news.

I think if we could just get some positive news about anything, we'd all perk up a little. Right now, the doctors just say everything is going as expected - so no good news, but also no BAD news. I guess that is what we should be thankful for!

I had great plans to take the kids to the zoo today before I realized it is still the holiday weekend technically which means parking will be nuts and my chances of losing someone in the crowds increases exponentially - so we ditched that plan. We are trying to have one of those elusive LAZY Days of Summer kind of day - well, that is until swim practice later this evening. : )

Have a great day. Thanks for praying for us and for all cancer patients. God Bless.

Day 15 - The Three Year Old's Invade!

Dad wanted to see the twins on their birthday today, so we came in like gang busters to the hospital. The twins were decked out in shirts that shouted they were turning "3" and were travelling in style aboard their red flyer wagon sporting giant mylar balloons of Dora the Explorer and Buzz Lightyear when they invaded "Pa Pa's" serene space.

We got there at 11:00 am and I think by 11:10, Dad was rethinking his wish to have them visit! Ha Ha! I'm joking, he wasn't. We did the whole birthday shebang - cupcakes, presents, singing, playing! William, in particular can get kind of loud! Dad "shshshshd" him a couple times. I figured if we got kicked out, we got kicked out. Live'n up that place!

Dad said he felt a little better than he had. He actually ate a very small birthday cupcake with us and that didn't seem too bad. His counts are still down, so he's going to be down too until they start coming up.

It's been a busy day for us. I know I'm beat. I'm so thankful for my kiddos even if I'm a little sad they're already "3". I think they had a great day and it's always worth all the effort and stress when they are so excited about presents and cake - everything. It's really wonderful to just celebrate THEM.

Here is Hayden's final Hoorah!

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Day 14

Day 13 was not a good day. Dad's mouth started to go full blown with the thrush and the sores - so he was miserable. He slept a lot of the day.

I visited today, Day 14, and he said he actually felt a little better than yesterday. He was watching FIFA Soccer when I was there. He looks tired and just down. Mom said he is down every which way. His spirit, his body, his everything. Mom said it's hard enough on us, but he has no escape from this damn disease. We can leave and block it out some of the time, but he just sits there in that bed day in and day out. The anxiety of the unknown and the uncertainty of what is going on - it just wears on a person.

Today, apparently, Dad asked Mom if it was really just one o'clock? She said that it was. He said that this day was dragging.

So.....my new plea is that if you are able to visit - please do it. This weekend is going to be a slow one up at the hospital due to the holiday, but if you can call just to say Happy 4th of July! Please do it. Dad's number is 314-747-5917 or if you want to call my Mom's cell because you're worried about waking him up - call 314-614-9590.

The problem with an illness is that when you have it for so long, people forget that just plain ol' human contact is the best medicine. Having a line to the outside through someone is a life saver. It does get hard to keep visiting and to keep calling, but it's such an important thing and it's one, I'll admit, in the past, I haven't done as well with either. It's so easy to just say, I did that, I'm done. Well, people, please, send a card, call - whatever - it could be the difference between my Dad and my Mom having a bad day, a good day and a GREAT day.

That's it! I'm off my soap box. Don't quit checking in on us just because I got on my high horse. We still need your prayers and good thoughts!

If it's any consolation - Dad joked that he was voted the Best Patient on the floor. Apparently, housekeeping, the food staff, the nurses all tell him they like visiting him because he smiles and is always pleasant. I guess some people aren't as well mannered on the floor! : ) I told the nurse today that he just saves the good behavior for them - he's never that nice to us! She just laughed!

Day 12 - Fred's on the floor

Well...a little levity is very overdue. The other day Dad asked me to do a project for him. He wanted a "head" with a face to hang on his IV stand so that when he walks around the floor, he can tell people he has a friend with him. He calls his IV stand "Fred". Don't know why "Fred", but it has been "Fred" for a while now.

I took the challenge up and fixed up a pretty friendly looking Fred today with yellow yarn hair and a fourth of July inspired bow tie. He fit perfectly on the stand and just for grins, I made a variety of bow ties so Dad can change them at will. He also has a pirate patch for one eye if he's so inclined to feel Pirate Like and an optional "tongue" accessory that can be applied should Dad feel like shooting Rasberries with Fred at anyone who enters or passes by. It all depends on what mood he and Fred are in.

I should take a picture of Fred and post it. I'll do that soon.

Otherwise, Dad is pretty low energy still. His ANC levels are bottomed out at "0" which is really the root of the energy crisis his body is having. His WBCs are at .1 still. Dad's tongue and mouth are beginning to act up again (if you recall back in February/March that happened too) and he's really afraid it's going to flare awfully again. I am hoping it won't. He's not eating enough to keep a bird alive again, but that happened before. He just doesn't feel like it and everything tastes weird.

That's it for today! Fred is officially on the floor and I think that cheered Dad up. He now has his own little comedic side kick to entertain the nurses with. Bye for now!

Day 11 - clickity clack

I don't know where the past few days have gone. It's crazy. I actually got on the blog and thought, okay - it's Monday. Yikes, I'm losing days now.

Anyways, after being out of town this weekend, I saw Dad yesterday. He has definitely been feeling the effects of having no immune system the past three or four days. He's really tired, just no gas in his tank, as he says.

Yesterday, the same old battle to get him to eat something was being hard fought by my Mom. He just doesn't feel like it, so he doesn't.

His WBC count is at .1 - that is really the lowest of the lows. The radiation and chemo have caught up to Dad's body and are doing their thing. We are still in the wait for other reactions to set in from the transplant but we probably have another week to see if anything develops. Then we continue waiting for his body to start recovering and the good cells to take hold.

Tonight, Quinn had her third swim meet and we're busy gearing up for the twins' third birthday this weekend. It's funny how life just GOES on whether you want it to or not. Amongst all the chaos of my Dad's situation, the daily grind just passes me by and all the little things we do clickity clack through the day and into the next week. Somedays, I just wish I could get it to all stop so I can catch my breath. I haven't figured out how to do that yet, though.

Keep up the prayers. I take every chance I get to send up a little one - don't want the man upstairs to forget what we're doing here. God Bless.

Day 7 - So Far, Pretty Good

Dad's WBC count came down to .7 yesterday. We don't have his numbers from today. The biggest "upset" of the past couple days has been that my Dad has become a diabetic through all the medications they have given him.

Apparently, one of his anti-rejection meds has dextrose in it. To counteract the effects of the dextrose, they test a patient's sugar levels. If they're high, they administer insulin. Dad is getting his fingers pricked every four hours and then getting insulin if needed. His fingers are getting sore. Hopefully, this won't be a permanent thing because it really ticked Dad off. He told the doctor that before he came in the hospital his heart was fine and he wasn't diabetic. Since being there, he's had heart irregularities and developed diabetes. He says he's leaving with more problems than he came in with! : )

Otherwise, Dad is tired, but he's making himself get out of the room and work on the stationary bike twice a day for 10 minutes each time. He gets up and down out of bed and around the room unassisted. He's doing well.

The side effects we've been waiting for haven't materialized (yet). I can't decide if that's a good thing or a bad thing. I'm hoping for GOOD.

Dad's had some nausea, but it's being controlled with meds. He's eating pretty well and today, when I visited, his voice just sounded better. He's been so down and today, I thought - hmmm, he almost sounds like himself. I'm hoping we can keep this even keel we're on.

I am actually flying the coop for a night this weekend, so I won't see Dad until Monday. I am looking forward to the overnighter with a good friend on Saturday.

Keep praying and thinking of us. Please. We couldn't do this without you. Thank you!

Day 4- Transplant

Today (well technically yesterday now that it's midnight and I'm blogging after getting home from the hospital) was the day my Dad has been working toward for months. The culmination of one journey and the beginning of another.

Mom was told the donated bone marrow was in the air this morning on its way from Europe. Later in the day she was told they scheduled Dad for 8:00 pm to do the transplant. I went up, and arrived, around 7:50 pm.

Of course, true to hospital time, and European time, everything is late. They told us at 8:00, it would be at least another half hour before they started running the prep drugs through Dad's lines. Well, it was another hour before that started. Then we waited for the bone marrow bag to come up from the lab.

Apparently what happens is the lab syphons out the red cells of the donor, leaving the marrow cells. Then they check the specimen to make sure it's the right donor and it's the right type of donation etc. Once all that checks out, it's sent up to the floor, where they run it through the patient.

Dad started the prep drugs - of which one was Ativan, a muscle relaxer and anti-anxiety medication. He volunteered for that one. They also ran Benedryl - good ol' Benedryl and probably 10 other things. By the time they started to run the actual transplant at 10:20pm, Dad was cozy, relaxed and half asleep. Once they started, they check for any reaction. Dad had some slight shortness of breath and his oxygen saturation level fell a little. They put on the oxygen clips in his nose to help and then once it was over, took them off. They said that is very common. The nurse thought that since the red cells carry the oxygen, when you're introducing the bone marrow cells into the blood stream, it kind of impedes the movement of the Oxygen and you see a little dip in the levels. All was well.

Dad tolerated the transplant very well. NO obvious side effects or immediate reactions. It rolled really smoothly and the donor we had was probably the best possible scenario for my Dad's body. The nurse told us the donor had the same blood type (which is a plus) and then his cell count in the donation was high - also good. The fact that they are a 10-10 match DNA wise to Dad is the best as well. They've pretty much given Dad's body everything they can to boot this junk out, now we wait.

While the bone marrow transplant is working itself into Dad's system, the chemo and radiation are still eradicating Dad's existing cells. It's really unbelievable what the body can do. Now we wait for reactions, infections, and a million other things to show up. Hopefully, few will. In about 14 days, we'll see if Dad experiences any Graft-Host disease (many people do) and that should be about the time we start to see Dad's white cells recover a little. That will be when the transplant cells wake up some more and say "Hey! This ain't my homey". Then they rebel a little and that's the reaction the body has for a while until they calm down.

So...I feel like we're over the hump a bit. This event has been built up so much for us and now that it's done, I know Dad has a million worries, but I feel like we can move on to the next phase of fighting this disease.

I can't tell you how blessed we are to have so many friends and family praying for us, thinking of us, and just checking up on us. I really can't say enough or show my gratitude enough. Thank you. The next part of this road will be a long haul, but if the end result is what we hope for - it will all be worth it.

Keep praying for us. Pray for my Dad's donor. They did an amazing thing. God Bless & Good Night!

Day 3 - Radiation

First of all, a correction - Dad's numbers. He went into the hospital after getting a WBC reading last Thursday of 12 and his WBCs, two days later, were already at 46. Since then, after one day of chemo, they came down to 26 and then today were down to 16 (after two days of chemo). Those little bugs can multiply.

Okay, today.....Today, Dad was scheduled for a full body radiation treatment around 12:00. They took him down to radiation oncology at 11:30. Lydia, Quinn and I went up to visit and tracked he and Mom down there at 2:00. They were just finishing up with Dad. The 20 minute procedure took hours due to all the adjustments they had to make with him. It was very disappointing. By the time we got Dad back up to his room, it was quarter to three. He was exhausted.

Apparently, last night, they had him doing his second chemo treatment and then a blood transfusion until 3:00 am. The lack of sleep, on top of the anxiety and emotional toll this takes on you, made for a rough day for Dad.

Tonight, I know he was going to ask for something to help knock him out. He fell asleep while visiting with the girls and I (which was fine!), so we knew he was zonked.

Full body radiation. Dad asked how effective this treatment is in erradicating the leukemia. They told him that they only do this procedure on people who are receiving cells because it completely kills everything in the body - so it's very powerful and effective. GOOD. They said you can't take that much out of a person and not replenish some of it (hence, the transplant tomorrow). There are side effects such as nausea etc - but we haven't seen those yet. It may take a few days for the chemo combination and radiation therapy to kick in before we see any side effects set in (hopefully, they are minor).

Tomorrow the plan is for the evening shift to do Dad's transplant. I think they are waiting on it to arrive and the day nurse told Dad it wouldn't be until evening on Tuesday. That's fine. He can sleep afterwards, hopefully.

I am really hoping that once we put this transplant procedure behind us, we can focus on recovering and managing any little hiccups that come along in order to work towards Dad coming home for the rest of the summer. I think we've all built this up for so long - been working towards it for so long, that now that it's here, everyone is thinking - what next? What now? What if?

Please put in a few extra words with the man upstairs during your bedtime prayers tomorrow evening. Pray for the donor and his family too. My family is forever indebted to a stranger's selflessness and I know we'll be praying for them too.

Day 2 - Chemo #2

Happy Father's Day, first of all, to all you Dad's out there.

I went to visit my Dad today and he looked really good considering. He had his first dose of chemo last night, really late - which iritated him, with good reason. Today, he was hoping for a better schedule.

Here's the low down in lay man's terms, because that's all I understand.

Dad got started on the antirejection regimen of medication today. It's a 20 hour drip for at least three weeks, I think. The reason it's so arduous is that they want the medication to completely saturate his body to help fight off any signs of rejection.

Tomorrow, Dad will get his dose of radiation.

Tuesday is actually the bone marrow transplant day. I thought all along it was Wednesday, but it's TUESDAY.

The donor specimen will take an hour or so to infuse and while that's going on a doctor and a nurse will be present to monitor Dad's vitals, reactions, and any complications. They expect none. The literature they gave my parents said the day is usually very easy physically, but high in emotional stress and anxiety. Dad is already having some of this, so any cards, good thoughts, a call, a visit - are very welcome.

The literature said that some people have their entire families present while the infusion is taking place. I don't think that is something Dad wants. Some people view this as a complete "re-birth" and one person on Dad's floor even has a birth announcement on the door and the final line is "Eyes Shining Bright With Hope".

There is a very high possibility of complications such as infection, pneumonia, rejection, host-donor disease, and a book full of others. Mom is trying to prepare herself, but I really don't think you can.

We're all a little (okay, a lot) on edge about this because so much weighs on this being a success. It's also just weird to have someone else's parts going into you while you're awake. Usually organ transplants aren't something you watch go into your chest through ports sticking out of your neck. I hope I can be present, but they don't know what time they're doing everything yet. If I find out, I will let everyone know so you can set your watch or something and say a prayer during that hour.

The fact that someone a half a world away is preparing to donate a potentially life changing and saving part of themselves to a complete stranger (my Dad) blows my mind and in so many ways restores my faith in humanity.

Dad's numbers - okay, he left the hospital a couple weeks ago with a WBC count of nothing, then it went up to a 4. Then it doubled earlier last week to 8 and then 12 on Thursday. Today it was 21.6. All of those increasing segments are not good signs. It means for sure the leukemia is advancing, so this transplant is more than ever, not only good timing, but essential.

Light a candle, say a prayer for my family. This is going to be a tough week and a hard month to follow. We are so humbled by your support, prayers, and well wishes. Thank you so much.

Day 1 - Chemo

I know Mom, Sterl and Dad checked into the hospital this afternoon and were there around 5:00 and settled because Mom called to tell me Dad's room number.

They hadn't started the chemo for today yet, but it was on the schedule.

We spent the day doing the dance recital marathon for Lydia and Quinn so we didn't have a lot of time to catch up on Dad's new digs.

I am going to visit tomorrow - Father's Day, of course! and will know more then.

Dad's room is #5917 and his phone number is 314-747-5917.

More later. The count begins at Day One for a third time.

Keep us in your prayers. Please.

Father's Day Celebration

We had a great time today and I wanted to share it with you.

Mia, Will, Lydia, Hayden, Dad, Kylie & Quinn

Mia, Ethan (Making a face), Kylie, Will, Dad, Hayden, Lydia, Carl & Quinn
All the Dad's and their kiddos.

Wrestling With Demons

In two days, my Dad will re-check into the hospital to start his fifth round of chemo leading up to his transplant. It's been a hard couple weeks in some ways being home and it's been great too. I know we are all riddled with worry and frustration. I know we're all wrestling with our own demons unsure of what this next phase of the journey will throw in our face. For my Dad, I'm sure, it's the fear of the unknown that is his demon as well.

I do not know where we are headed, but I know where we have come from and we've been working towards this week with great hope and anticipation that Dad's body will find some relief from the disease through the transplant. With everything that can go wrong, might go wrong, should go wrong, all we can do is pray that it all goes right.

Keep us in your prayers, particularly next week.

Tomorrow we are celebrating Father's Day and celebrate is the key! The kids are thrilled to be going to Granpda's pool and even asked if he would get in with them (which he can't, unfortunately), but I'm sure he'll watch them. It's going to be a good day.

The Little Buggers Are Back

Dad had blood drawn today and it came back with his white count doubling from his last draw, which was last Friday, I think. He was at a 4 last Friday and today it was at an 8. The doctor thinks the little buggers are back and depending on his count on Thursday, will administer a couple days of what we're assuming is an oral chemo drug for Thursday and Friday before Dad goes back in the hospital.

I know it had Dad down and he said he even told the doctor that he wished, just once, he'd have some good news for him. Dad admits the Doctor told him this would be a fight.

I feel like at least we have a plan going forward right now. We know what's going to happen next week and for a while after - sort of. I told Dad it would be worse if we didn't have a plan of attack. I don't know if he bought that or not.

Anyways, the war rages in my Dad's bones, let's pray that donor has some mega cells that can kick this crud's butt.

Friday we're celebrating Father's Day with Dad at home and tomorrow, depending on how he feels, he'll come watch Quinn swim in her first swim meet.

Signing off for now.....

Kylie's Birthday

I can't believe I haven't checked in since last week. Today we're going over to Ethan and Sherry's to celebrate Kylie's 4th birthday. Mom and Dad are coming for dinner later.

I think this week was a good one for everyone. My Dad had treatments everyday, but they went routinely. He met with the radiologist who will be doing the radiation treatment a week from tomorrow. They really liked that doctor and said he was so nice.

The plan is to go in for blood work Tuesday and potentially not have to do anything the rest of the week. If that happens, then Dad will check back into the hospital on Saturday, June 19th and start chemo. He'll do the two days of chemo, one of radiation and we are still planning on doing the bone marrow transplant on the 23rd or 24th. Then we see what happens.

I am very optimistic. I just feel pretty good about everything and even though I know Dad is nervous and really worried about how hard it's going to be on his body, I know he's going to get through it.

So, today, we put Leukemia out of our minds to put Kylie foremost in our hearts and I'm so excited to wish her a Happy Birthday. I can't believe she's 4! It's gonna be a good day.

God bless, Happy Sunday to you and I am sure you'll hear from me again soon. : )

What's up?

This past weekend, we all went over to Mom & Dad's to help work in the yard and open up the pool. It was a lot of fun. We had a good day. Dad was low on energy, but high on motivation. He got down to the pool to supervise the guys getting the pump going.

Yesterday, he and Mom went down to the clinic at the hospital for a treatment which took way too long. Dad will get five "chemo" treatments this week through IV at the clinic. It's a different chemo than he's received before with few, if any, side effects supposedly. This is in an effort to suppress any further growth of the leukemia until we get to transplant.

Today, I know was going to be a long day at the hospital for them because they were going to meet with the radiologist who'll do the radiation later this month on Dad, meet with his doctor, get blood (takes 4 hours), get his labs drawn, and get the chemo. I doubt they'll be home much before 6:00, if they're lucky and their first appointment was around 9:00-9:30. The good thing about it all, is he gets to come home, though. At least from my perspective.

The rest of the week plays out kind of routinely with more doses of the chemo. I think after this week, Dad just goes in for routine lab draws until he actually checks back into the hospital on June 19th.

I did register with the Be The Match program for bone marrow donation this weekend. If you go to marrow.org you can look up places in your area who are sponsoring bone marrow drives. If you're not registered, think you might want to, or are thinking of giving/donating blood or blood products but need a little encouragement, email me, read my blog - My Dad's journey has made me an aggressive advocate for people to donate. It's simple, it could save a life.

Check back with us soon!

Keep the prayers, well wishes, good thoughts coming. We need them, love them, appreciate them. While you're at it, add all those people suffering from cancer to your list. I know my list continues to grow with people to pray for who are battling one form of cancer or another.

Home again, home again, jiggity jig

I think Dad had an okay day at home today. Mom had to go out and about collecting all his medications which was an aggravation because one of them wasn't in stock anywhere. It's just strange. She got it done, though - GO MOM!

Dad is scheduled for treatments next week everyday and he's not supposed to go back in the hospital until the 19th of June.

From now. until then, I may or may not blog. I am going to enjoy these next two weeks with my family and with my Dad and go from there.

I took the kids to the pool today for the first time this summer. Last summer we tried to go once and that was it. I couldn't deal. The twins were too little. Today, though, they were awesome. It was challenging to keep tabs on them because it was crowded, but they had a blast. Quinn had fun, but wished some of her friends were there too. She is a strong enough swimmer that she goes and does her thing on the slides and diving board and checks in with me. Lydia wants more independence, but I'm just not ready to give it to her yet. She still needs to stay in shouting distance for my comfort. Then there's the mighty duo in their life vests and arm bands. They look like mini michelin people. They definitely need maximum supervision, so that's what they get! We'll see how visit number two to the pool goes this weekend possibly.

I'm pretty proud of myself that I left with four kids and came home with four kids today - everyone was accounted for and everyone was tired! Yeah ME!

Dad is Home as of about 5 pm this evening! : )

Day 35 - Homecoming

The rumor this morning was my Dad would be coming home today!

If you have a chance to call, stop by, send a card - do it. He will enjoy hearing from everyone.

No word as yet of when he'll get home today. It always takes forever to leave a hospital.

More later!

Have a good day!

Day 34 - Part III

Dad saw his primary doctor late in the day. He told Dad they are proceeding with the transplant and he will get to go home at the end of the week. Next week, Dad will have to go in everyday for a treatment with a trial drug that is going to try and suppress the progression of the leukemia while we await transplant.

The doctor told my Mom that he wouldn't recommend this drastic of a procedure if he didn't think there was a chance of it working. He said if he thought they were out of options, he would tell them that straight up. The procedure itself will be grueling for Dad. They are going to attempt the two days of chemo and one of radiation when the time comes. The chemo isn't working anymore on it's own, so that's why they are going to hit it hard with radiation too.

Dad asked if he didn't have the procedure, what would happen. The doctor told him he'd have 3 to 6 months. Dad, of course, said, well, let's do it then since I'm out of options otherwise.

So, that's how the day ends. A lot we could be dwelling on and thinking about, but not much that you really want to. I am hoping the light of day will bring a better perspective for all of us.

Day 34 - part II

Dad's biopsy came back with blasts - 65% blasts. We were all, including the doctors, shocked by this as you can imagine.

Although Dad hasn't seen is Primary doctor yet today (he has a call into him), the tentative plan is to have him come home at the end of the week. They are still planning, as far as we know, to proceed with the bone marrow transplant on the 16th. Dad asked if they could just go ahead with the next round of chemo/radiation to get prepped for the transplant, but until the donor is able to "donate", they can't prep him. We're hoping they can prep the donor for an earlier date, but we don't know if that can happen.

He had an echocardiogram this afternoon just to make sure there isn't any dammage to his heart from the last round of chemo.

He is feeling a little better if that's any consolation.

As always continue to pray for us and thank you for the prayers you've given us. We are humbled by it and grateful for it. As a good friend just emailed me "If God brings us to it, He will bring us through it".

Day 34

All I can say is "damn it".

Called Dad this morning to chat while I was in the car on the way home from a meeting and he was hardly understandable he was so upset. He had his biopsy results and all I know right now is he said, "it's still there". He didn't have any more details or he hadn't fully wrapped his head around whatever details they gave him.

I was planning on visiting this afternoon, hopefully, I'll get more information.

Day 33

Welllllll, I don't have anything great to report. I wish I did. Basically, they've messed with Dad's medications trying to get his blood pressure under control. We're still waiting on his blood counts to come up and for his biopsy results to come back. The holiday weekend put the biopsy results behind, I think.

Dad is pretty down. We're all pretty down. We really want him to get home soon for a bit. He is scheduled to go back in on June 16th to restart chemo for his transplant. Everyday he's stuck in the hospital, is a day less he has at home before the next stint which will be even longer than this one.

Dad is getting increasingly agitated by everything and who can blame him. A new set of doctors came on his case today - they rotate every two weeks. It's frustrating because you have to "break a new set in" all the time and Dad's getting tired of that. They all have their own opinions and theories and frankly it's getting old. Yesterday, apparently Dad's heart monitor went off and the new doc who came in asked if he's ever been "shocked" to get his heart back in rhythm. My Dad and Mom about flew off the handle at that one. SERIOUSLY! He has no other symptoms when he goes a-fib - it settles shortly thereafter, it's nuts.

Anyways, I'm really hoping to get good biopsy results tomorrow so that they will consider giving Dad a growth hormone to give his white cells a jump start.

Please pray for renewed strength and energy on my Dad's part, on my Mom's part. It's grueling hanging out at the hospital day in and day out. If you can visit, do it. If you can call, do it. Please.

Love and blessings to you and yours.

Day 30 -

WBC - 1.1
ANC - 220
no bands
22 segments

We're all cornfused. What the hey? WBC down, ANC up.

I took the twins up to visit Pa Pa today and we brought him a Happy Meal. I think Dad really enjoyed their visit. They were really animated, talking his ear off, singing, the whole shebang. We brought books for Grandma to read and they read with her. They gave big hugs before we left and we scooted off to home. It was some good medicine for the Pa Pa.

Day 29 counts

Todays counts were WBC 1.6 and ANC 160 - one band was present (which is a contributing factor to the computation of the ANC). We want more bands to show up.

Dad keeps telling the nurses to do the "Band" dance for him so his bands wake up. So, we're dancing.

Day 29

Yesterday, Dad's WBCs went up to 1.5, but his ANCs went down.

They did a biopsy yesterday afternoon - it went really well.

I visited this morning and Dad was really light headed and frustrated with it. He is losing body mass daily which concerns all of us. His arms are skinny. He's just skinny. My Mom is really trying to get him to "exercise" and he just can't. He does perk up in the afternoons usually, so I hope this afternoon was better.

When I left he was sitting in the chair eating a good lunch.

I think he's depressed and who can blame him. That, on top of all the other stuff going on, makes it hard to be motivated.

I am really hoping for a good blood count today to lift his spirits. We need some better numbers soon so we can bust him out of there and out in to the real world where the sun shines. You can only do flourescent lighting for so long.

Have a good, safe, Memorial Day weekend. If you think about it, call my Dad and wish him a good day - 314-747-6907.

Day 27

After 9 days of being under the weather myself, I finally felt well enough to visit Dad this afternoon. Thank you to Sue who helped me out with the kids so I could even go.

When I got there, Dad was sitting in his chair, but looked pretty peaked. He said he didn't have any gas in his tank. His blood pressure was still causing him fits of light headedness. I stayed about an hour and 15 minutes and in that time he was trying to get motivated to shower - he was just getting in the shower when I left at 3:10.

They had changed his medication today to help with his blood pressure - so we were hoping to see some improvement.

This evening his doctor came in apparently. Mom just called to fill me in. She said he is very pleased with how things are looking. He wants to do a biopsy tomorrow or Friday to really get a good picture of what's going on. He went over his plan for the transplant coming up.

Right now, he feels that providing Dad's overall health stays the same or better, he can proceed with the most aggressive "prep" for the transplant which entails two days of heavy duty chemo and one day of radiation. If Dad's heart starts acting up or his blood pressure doesn't resolve, then he will revert to a less aggressive treatment of 7 days straight chemo. He told my parents that his staff are in contact with the donor and trying to make arrangements for collecting the marrow later in June.

Overall, the visit from the doc was a good thing. Mom said she talked to Dad this evening and he was sitting up in his chair working on a puzzle and said he felt really good. Hopefully, that's his new medication kicking in.

Today his numbers were WBCs 1.2 and ANC 180 - both good numbers.

Dad admitted to Mom he is scared - we all admit we are scared- but like I told Mom tonight let's just get him home next week, have a good couple of weeks there and worry about the next step after that. Other patients on the floor have run into my parents in the lobby or wherever and they've been talking about their own upcoming transplants and what not. One person told them that he knew of someone who was on his third transplant and it finally took. Another patient has never made it to remission and is only in his mid 40s, but they are going ahead with the transplant anyways. Dad has a lot to be thankful for and grateful for, but we are all hoping for a one shot deal on this transplant with a lot of success.

Tonight, give thanks for good news today and pray for those who are less fortunate than us. We have a lot going for us even on the darkest days. Thank you for your blessings and your gift of prayer. My family is so humbled by everyone's comittment to my Dad.

Day 25 - Steak n Shake Run

First of all, late yesterday Dad's results came back and his white cells were at .5 and his ANCs at 115. That's really good work.


Mom made a Steak n Shake run for Dad today on her way to the hospital around lunchtime. Considering how crabby Dad was when I talked to him earlier in the morning, I was so glad she was getting him some "fun" food.

Dad apparently was having a "dizzy" day and couldn't even sit up without feeling light headed and faint. It was really, for lack of another word, "pissing him off". The doctor came in and in Dad's words he, "chewed him a new XXXhole". Glad I wasn't that doctor.

As Dad explained, it is completely frustrating to keep having these "spells" with no understanding as to why they happen. The doctors keep messing with his heart medications and fluids and that is really aggravating. He is convinced if they would let all that alone, he'd be fine. I am not sure that he is correct, but it's his body, he probably knows.

His white cells came back at .5 again today. No word on the ANCs when I talked to my Mom around 4:30pm.

I know Dad is sick and tired of being in the hospital and who can blame him. Like he told me today, he's been in there three months already. He's worried that these "spells" will be what sets him back from going home sooner than later. Every day he's there postpones his transplant.

I am praying as we get closer to him going home after this round that he can retain remission until he goes back in a few weeks later so we can get this transplant underway. If the leukemia comes back again before he can get the transplant going, it will be a set back like no other. I wish they would just go ahead with it while he's there, run the next round of chemo and get it going. Why risk sending him home and having things go wrong? I know, I know - do I have an MD after my name? Nope.

The upside is Dad is feeling well enough to be crabby. I take that as a good sign.

Love to you all, hugs and blessings for your prayers. I know so many of you lift us up in your hearts daily and we thank you for it. Keep up the good work! : )

Day 24 - Busy weekend

Sorry for not posting yesterday. We had a busy weekend. I still have a bad cold, so I haven't been able to visit my Dad, but I've been getting updates a couple times a day from he and my Mom.

Apparently yesterday Dad had 15 hours of IV drips going, one after the other. If it wasn't his steroid it was an antifungal medication, antibiotics, fluids, platelets or some periodic table element (magnesium, potassium etc). All of that, I know, made for one unhappy Grandpa.

Today, he said he didn't quite have his sea legs under him. Unfortunately, he is in a-fib again, which could contribute to this a little, I guess. Remember A-fib is when his heart goes out of rhythmn. They are watching him carefully.

Yesterday, his blood counts were WBCs .4 and ANCs 80.
Slowly, slowly, they are creeping up there.

We need them to take a good jump here soon, though - just for morale. Come on you little buggers.

Dad had a goal of being home by Memorial Day. I don't think he will make it for that, but I could be wrong. Hopefully, he'll be home the following weekend at the latest (I'm optimistic).

Thanks for checking in with us! God Bless and have a good night! : )

Day 22 - Feeling Better

They started Dad on an IV steroid last night and by this morning he was feeling like a new person. Thank goodness. He said he couldn't believe how much better he was doing. He got up, ate 3 square meals, felt good, and walked three laps in the hall. After being pretty much bedridden for 5 days, we all cautioned him not to over do it. You know how it is, you feel good, you go crazy, and then tomorrow, you pay for it.

His numbers today-
WBC .3
ANC - 30

ANCs went down, but they said not to worry. That number is actually a component of several numbers. His sample today was just not showing any of the other numbers so all they had was the WBC to multiply by 10 and there you get the 30. It's way more complicated, but I don't understand it all.

God bless, Happy Weekend to you! Enjoy the good weather.