Day 46...the little things

Today's picture is wishful thinking. It is brutally hot here in Arizona, and we are tired of it. What I wouldn't give for nice cool days, in the 90's.

Hannah is great, she went to a jewlery party with Sharon and then even to the mall (mask and all) for a bit yesterday with 2 friends. She is ready for the arsenic starting tomorrow.

Now for a little personal reflection.

To say that this experience has been life changing would be an understatement. In many ways, it has been polar opposites. The fastest and slowest 46 days of my life at the same time. The most heart wrenching and joyful period of my life. The blessings and tears have been too many to count.

The motto of the the coaching staff that I work with is "do the little things" If you do the little things right, the big things will take care of themselves. So many times we as people take the little things for granted. The mundane, the things that we have to do. The things that I really don't want to do, but need to do.

Over the last 46 days, I have come to enjoy the little things. They can mean so much. A smile, a knowing touch, laughter, the wink of an eye. Little things that we do everyday that we do not think about, now affect me greatly and mean a great deal to me.

Now looking back at my 52 years, I feel that I have missed a lot of the little things. I think maybe that I was trained or conditioned to go for the big things. The mountain top experiences, the destination. I don't know, maybe it is a "guy thing"

The journey is filled with the little things.

The little things may not bring the memories, but in many ways they fulfill us. Sharon posted a Facebook status this week of "I have wonderful beautiful friends, my heart is full"

Sharon understands the little things.

I am learning to.

Eucaristia

Day 42... Back at the Clinic

Been a few days since the last update, so I thought that it was time to bring you up to speed. Hannah has been home since Sunday, and things are getting back to normal. Sharon and I are both back to work, and Hannah is hanging out during the day getting healthy.

She had not been to the clinic since last Friday, but today she had to go in to have a bone marrow aspiration. Loads of fun. Since she is being treated at PCH, they actually put her out with general anesthesia. If she was being treated as an "adult" at another hospital, she would be awake for the procedure, but as PCH it is nighty night.

She did great and is back home tonight. Her test results are good! Blood work came back strong, and the marrow tests were good as well! So back home for a few more days until she starts going to clinic Monday through Friday for 12 straight weeks.

Monday starts the second phase of the protocol, which will feature the drug ARSENIC. Yes, boys and girls you heard me correctly she will be treated with Rat poison. Sharon and I considered going to Home Depot to pick up some DCon because it would be cheaper, but thought better of it. We can thank the Chinese for this part of the protocol, they came up with it.

When we asked about side affects, we were told that there are very few, and this better tolerated than the nuclear stuff they pumped into her last month.

Thank you for your continued prayer and support. Again, words cannot express how thankful and blessed we are.

As a side note, I will probably get in trouble for using the picture that I choose for this update, but I really don't care. I like it.

Eucaristia.

Day 39.... Home...

Hi all, after the emergency room, PCH, and the staycation at Chez Fitch, Hannah is home!!

Her room is done, as you can see by the photos!!

Her room is the nicest room in the house, by far! I wanna have it, except it is a little to "girly" for me.

The "thank you's" to the people that made this room happen do not seem sufficient. There were so many that I KNOW of, and yet I know that there were others that I do not know of.

There are really no words....

Home.. I now remember what that means. For the last 39 days this building where I have been sleeping was not home. It was not filled with family. However today there was an incredible transformation. No longer was there the sound of hammers, the smell of paint, and the movement of workers.

Today this building was filled with the sound of music, laughter, and the smell of a home cooked meal.

Home..I truly understand the meaning of that now.

We are so very blessed.

Eucaristia.

Day 37.... the clinic....

Let me start of by saying this. Blogger is making me MAD. For some reason I cannot upload photos. Had a great one for tonight so all of you that know Hannah real well close your eyes. Picture her excited, and that is the picture at the top of the page. Darn blogger.

So Hannah and I went to the clinic today for her first blood work since she was discharged.

She had several good days at Dr Tom and Janis' house and we were ready. Strategy was discussed, and the game plan was in place. Here it is... Blood tests good, no transfusions, go home.

That being said she had a tuff night. Up for about an hour with really bad heartburn. I actually think that while Hannah did not enjoy the heartburn, Sharon enjoyed it as I was snoring and this was our first night in the same bed in 37 days.

As we drove to PCH not a lot happened, but when we got there, Hannah's attitude changed. It seemed to be a sad place. Something that we are not used to. As she sat there with her bald head, and not feeling great, she was commenting on how bad she felt for the other kids. One of the reasons that Hannah is loved so much is that she, like all of our girls always puts others before themselves. Sharon and I are very fortunate.

That being said, we go in, have tests, and guess what?? All the test show that she is doing great!!! Numbers up, no cancer.. As Sarah would say, Hannah is kicking cancers ace!!!

On the way home I was fortunate enough to see HannahPod (hPod). hPod is her version of an iPod on shuffle. Songs, songs and more songs along with dances in the seat next to me. I was glowing.

Hunger set in and Hannah wanted a California Pizza Kitchen frozen pizza. One way to get it. Go to Safeway.

We were given the thumbs up for going to a public place, so as we stood outside the door, me getting the cart, and her putting on her mask she said she was nervous, I looked at her and said, "Why? We gotta do this some time." Her response, "You are right, lets go."

The pizza tasted great.

Eucaristia.

Day 35... What I know...

Hi all, I had a post last night, and blogger has somehow changed how pictures are uploaded, and I lost it. Tonight, for whatever reason, I am not able to upload pictures, so this update will be all words.

Hannah is out of the hospital. She is doing well. What I have come to realize is that this is now the grind. Not a lot happens from day to day. Hannah gets stronger, while we all wait for a miracle. The miracle is happening, it is happening with God's timing not ours.

I spent most of the day with Hannah yesterday, and several things were confirmed.

Good comedy is timeless...
We watched several episodes of SNL from first year to current, and funny is funny, good comedy stands up.

I make a better grilled cheese than PCH.

Hannah has a personality that is contagious.

Hannah gets tired fast. But she rebounds much faster than she did a week ago.

Hannah does not seem to care that she has no hair... she is VERY comfortable with who she is.

The biggest confirmation..

I love my family very much..


Eucaristia.

Day 30.... The God Bead

Hi all, it has been a few days since I have posted, but not by design, life has just happened.  Sharon has gone back to work (working half days), and of course last night I had to attend the Arena Bowl these are priorities to us, and heck, the kid is now 18, an adult, she can take care of herself.. Right?

Well, over the last few days, Hannah has rejoined the world.  Her numbers are great, she looks good, the sores are almost gone, and she is eating.  She is being weened off all of the drugs that she has been taking, all preparing her to come home.  We were expecting this to happen on about Wednesday.

Well today we were dropped a bombshell.  She is coming home on MONDAY!!! RED ALERT, RED ALERT!!!.  The house is not ready!! The carpet is not in!!  What shall we do?  The elves kicked it into high gear today, and we are basically waiting on the carpet at this point.  We are at the mercy of shipping and there is nothing that we can do about it.

So Monday, when Hannah gets discharged, she will be going to a "halfway house" of sorts.  She and Sharon will be staying at the house of Dr Tom and Janis.  What could be better, going from the cancer ward to the home of a cancer Dr, and former nurse.  Perfect!
 
On Friday, Hannah, Sharon and I were in the room when Chantelle came in to tell us about Beads of Courage www.beadsofcourage.org.

What we found out about this organization is that they help kids that are seriously ill deal with their illness by giving them beads to string together representing their journey.

Each color and style of bead has a different meaning.  For example the number of days that you have had Chemo is a specific colored bead and you get a bead for each treatment.

Other beads include:

One bead for each day in the hospital (this was a lot  for Hannah)
Number of times you had a poke.
Hair loss bead
Milestone bead.  etc.

As Chantelle counted out the days in hospital bead, and got to 30, Hannah was shocked.  She looked at Sharon and I and said "wow, that's a long time it doesn't even seem like two weeks"  Sharon and I then let her know that about two weeks of her stay was brutal.  What we came to find out is that she has very little recollection of that time - this is a good thing.

Personally I enjoyed learning about the beads.  Upon reflection I realized that the bead box was missing one bead.  The God Bead.  While it might be similar to the anchor bead, to me it would have much more meaning.

The God Bead would be a sign to me that the only reason that we have gotten through this is because of Him.  At the time of hurt, questioning and pain, it was the bead I needed most.

 I realized that the shape of the God Bead is that of a Cross.

 Eucaristia

Day 26... Things looking up........

So I have not updated (you or the blog)in a few days, family members have, and quite frankly not a lot has happened.  Well, today, I can honestly tell you that things have happened.  What has happened has been on many levels, Hannah's health, house progress, and God's grace. 

From a practical standpoint I will eliminate house progress.  I, in no way mean to take away credit, or take away the importance of this, however, I believe it will be better served in a later post.

So the other two areas of change are... Hannah's health, and accepting God's grace. 

So as to keep you all here, lets deal with God's grace first next, as that will keep most of you reading until you get to Hannah's health.

I am learning more with each passing moment.  I have never been one to stand on the sideline.  Put me in the game.  Well as of this moment, there are 8 people in our house preparing it for Hannah's return.  This is difficult for me, I am here blogging away, and they are working.   I am becoming ok with this but it is still difficult. 

God's grace is being displayed to me through these people. They will not let me help.  They want me to get rest.  They WANT me to blog.  So through God's grace I am learning that being an active participant does not mean that your fingernails need to get dirty.

So on to Hannah’s health.  Ok, here goes.  She has been fever free for 48 hours!!!!! She is eating!!!! They are going to start to wean her off the antibiotics starting tomorrow!!!!  They have scheduled her tests to compare against baseline for Monday!!!  What does this mean?  Well if all goes the way it should, she should be home this time next week!!!  At this time phase 2 of the battle will begin. 

Hannah's personality is coming back.  In a big way.  Here is today's example.  Dr. B was talking to Hannah about grandma's visit and how nice it must be to have your grandma live with you.  I mentioned to Dr B that she lives in a guest house, and Hannah said, "yeah, she lives outside in a shed"  Hannah is back.

Eucaristia.

Day 24... Mom's turn...

So I told Craig I would update the blog tonight, the evening got away from me. Dinner, shower, dressing change, nausea, it was a very full and eventful evening. So here it is 10:30 and I am pooped. I started back to work for a few hours today and it was good to be back at Desert Mountain and out of here for a few hours but at the same time I couldn't help thinking that the vary capable and caring doctors and nurses might mess up if I wasn't here. Of course they didn't. She slept the day away - her friend Amanda came and hung out with her and she slept the entire time, rude, I taught her better - it is not polite to fall asleep on guests. Anyway thanks so much Amanda for hanging out with sleeping beauty. Her numbers are still good this pesky fever needs to go away though I mean really, 2 weeks is quite enough. On. The up side of that the angry rash she had is going away.

I had lots of things to say but now can't put a thought together. Some elves came to my house today and straightened up and cleaned and organized. You know those pot shelves that we (I) put stuff on and then pretty much forget about until we look up say to no one in particular "I really should get up there and clean those off) well. I've been saying that for about 5 or 7
years - They Cleaned Them!!!! Oh my a true labor of love. So thank you, you know who you are, I don't, well I have an idea. And if you ever need your pot shelves cleaned I'm your girl.
..

That's all I've got. Too pooped to peep..

Eucaristia

Day 22... Dad is back..

So after a couple days off on Hannah's status, here goes. Over the last few days, her immune system has increased by 1000+ points!!! Huge gains.  Cancer is on the run.. No cancer cells being produced, and her blood levels are great.  (as confirmed by friend Dr Tom.)

That being said however, we are still days away from her coming home.  Her blood levels will allow it, however she is still fighting a slight fever,  Hannah is still not eating a lot which is a result of the sores in her mouth (that have gone down her throat).  When the fever and the eating gets resolved, she will be home.

So the race is on, what will she come home to?  Well if she was discharged today, she would not be coming home.  Friends and family have been working around the clock to get her room ready, but in some cases we are at the mercy of deliveries.

Today was an eventful day.  My sister flew in today to help.  Those of you that know my sister know that she is a very thoughtful person, and nurse, that wanted to be here and help.  Keep in mind that while my sister would do most anything for anyone, she is not one to get dirt under her fingernails.  Well guess what?  Project leader Allie had her sanding an end table with a power sander!  WOW.

Speaking of Allie, she and big sister Jessie left the house today covered in paint.

As I have said before, the outpouring of support is beyond belief.  I come home daily and see changes to our home that have one focus in mind.  Hannah's health.

Eucaristia

Day 21..Sarah's trip.

I would say that the Cobley family has been thrown the most serious curve ball of our lives, but after so many out reaches and get-wells, I'm realizing that we're not the only ones who have been completely phased by Hannah's health. I was in town for 5 short days to take a good look at my sister and make sure she was being well taken care of at PCH. I mean, that's what big sisters do, right? Right. We had two bad days, Thursday and Friday. She didn't respond much to me while I was with her, and I was praying for something more. It might sound selfish, but I couldn't dream of leaving Phoenix to go back to Seattle without something, anything that let me know we were going to get through this. As I was driving to the hospital on Saturday morning I get a text from my Mom that says "Hannah was just asking for you." I don't think I could have possibly driven fast enough. With a smile on my face and tears in my eyes I arrived at 20th and Thomas in record time (no, Mom, I wasn't speeding.). I come racing up to the 7th floor to find her sleeping. I was slightly disappointed but I waited. Within the hour she opened her eyes and took a look around her room. Her eyes rested at mine, she winked. And smiled. "There she is!" I thought as I came and sat at the edge of her bed. She scooted over to one side of her bed so I could fit next to her. We laid together and she laughed and kept her hand with mine. We watched a movie, sang along to the soundtrack and stuck our feet in the air to see who had a better toe point (we were watching a dancing movie.). Dad just wanted to watch Harry Potter, and in a very Cobley girl way, we both sat up at the same time, rolled our eyes, and went back to what we were doing.

 Just like that, it was time for me to get on a plane. She was tired again, so I grabbed her hand, gave her a big smooch and told her how much I loved her. What I wouldn't do to be back in that hospital bed with her again.

Eucaristia

Day 19... Ernie the bug man...

Today was a non post day.  Not a lot happened.   Hannah had a difficult day with the meds, but her blood work is coming back with great results.  Another day with no cancer cells being produced!!

Over the last few weeks I have been asking God how He can further His kingdom through this. Today, our friend Bethanne who has been one of so many helping at the home front, had an experience today that shows that God is control of this situation.

This is from her blog: confessionsofamiddleclassmom.blogspot.com.

Ernie the Bug Man

Being a religious person, and trying, most of the time, without success, I do try to see God's work and the good in people everywhere.  I seem to gravitate to the obvious...children, pastors, well meaning friends.  I DO try to look beyond the most likely candidates, and see God in people who aren't always nice, smiling, friendly or well meaning.  Today I saw God, I stood in an open garage and actually spoke to God....He wasn't a pastor, a friend, or someone I would consider unpleasant, and definitely wasn't a complete stranger......It was Ernie, the "bug man", otherwise known as an exterminator.  Ernie had come to my friend's home to spray for bugs and do a preventative check for termites.  My friend's daughter is in the hospital and I have offered to help get her daughter's room ready for her return home.  Ernie went about his business and we came to a stopping point.  He thought we should clear some plants against the house and I couldn't have that done immediately.  We agreed that we would schedule another time when he could finish spraying, and as he said, "Do the best job he could do."  We headed out of the house and he looked at his palm pilot, checking dates.....He said, "You know, she is going to be alright."  Before I could utter a response he went on, he told me that God works through situations. he hasn't necessarily created the situation ,  but that can teach his followers something through them.  I stood with my mouth, which I'm sure was hanging open, unable to speak.  He went on......He said," You know all the good you're doing here?  All the good that this family has done?  Your church?" I said." Yes."  He said," God accepts it, but he doesn't need it. He is everything, everywhere, perfection, that is why he gives it back to you in another form.  It may be a strengthened faith, it may be a prayer answered or a healthy outcome.  It comes back, whether you feel you deserve it or not."  At this point I started to weep.  I wasn't sobbing but, I WAS weeping.  He took my hand and confidently stated,  "She is going to be fine."  I composed myself and told him I would call him with a follow up appointment time, that would work with the outpatient treatments my friend's daughter would be having.  I put out my hand to shake his....he shook his head and with open arms embraced me.   He told me he would be gone to Guadalajara on a mission trip for a week and to call him after that..... I am certain I have seen God before, but my eyes were not open to it.  Thank you Ernie, for opening my eyes to see God right in front of me, working through you.......

 

Eucaristia..

Day 18.. Hannah 450, cancer ZERO

 

Hi all, last night was about reflection and warm fuzzies.   Please do not think that I feel that warm fuzzies are not important.  They are.  No question.  However tonight is about the score, you need an update, so here it is.

The number that we needed to get to zero, her ANC, which is her total immune system strength, got to zero on Thrusday, and has been going up and down over the weekend.  In the last 24 hours it has increased by 400 points, and there are no cancer cells being created in her system.  Hannah is winning in a big way.  

She does not feel like it however, she still feels bad, but one of the major signs that she is winning  today was that the sores in her mouth were producing more mucus.   Gross sounding I know but what that means is that Hannah's immune system is attacking the sores.  That is what is causing the mucus.  Gross, yes, but sometimes battle is ugly.

Eucaristia.

Day 18... A great way to start the day!

The link below kinda sums up what I was feeling last night.  

http://www.youtube.com/watch?v=QSIVjjY8Ou8&feature=share

Day 17... Letting go....

****Flash****

Hannah's white blood cell count it up (that is good) and for the fourth day

in a row, she has not produced any cancer cells!!

So, I was not going to post tonight, I am very tired, I kinda hit the wall today, and quite frankly wanted to go to bed and have everything go away.  Well guess what, I do not have that option for two reasons, one is that I have a daughter that is fighting with all her might, and I looked in the mirror and said to myself, "really, you are tired???  give me a break..."  

The second reason is that God does not care if you are tired when it is time to learn something.  

I have several things going against me in my general make up.  First, I am a man, I have learned over the years that men have flaws, and women are very good at finding those flaws.

Second, I am a dad.  Dads by nature think they can fix everything.   "I am the dad, I will fix it."

Thirdly, and most importantly is that I have been a high school football coach.  Face to face, fix things.  Take it on, deal with it, work harder win.

That in a nutshell is me.  I want to control those things I can.

I learned along time ago that it is very easy to let those things go to God, that can not be controlled.  I can not control Hannah's health, so for me, it is very easy to let that go to God.  I know that I can not fix that, I have to rely on others for her to become well.  I am simple minded and that is easy for me.

Today, I learned that letting go of those things that I "think" I can control, while very difficult, can be very liberating.  

This evening, our house was full of people.  Painting, cleaning, doing laundry.  Simple things.  Stuff I can handle, except not at this point of my life.  A good friend came up to me and told me that she was taking the laundry, that I needed to focus on Hannah and work.  All I could do was hug her.

I am learning to rely on others.  What I am learning is that this is not a sign of weakness, (as I may have originally thought) it is actually a sign that I am relying on the body of Christ to minister.  I am weak others are strong, that is why we are a body.

Eucaristia