Sunday, July 31, 2011
Now for the fun stuff. We Cobley's laugh. A LOT. Today there was laughter and snorting in the room. As I spoke of yesterday, Hannah has sores in her mouth that are a direct result of her chemo. Her nurse for the day, whom we love, decided enough was enough we need some comfort. Bring on the morphine.
We all know that one of the many things that we love about Hannah is her quick wit. Well trust me Hannah's quick wit, with a tongue that looks like it belongs to Jabba the Hut, on morphine was something to behold.
Let me give you an example. To truly understand this you must all participate in what I am about to ask you to do.
First. stick out your tongue.
Second, hold the tip of it with your index finger and thumb.
While holding it say, (Hannah's best quote of the day) "this morphine is wonderful stuff"
Please, throughout the evening stop and do this with your favorite Hannah quote, and you will see why we were laughing so hard. Even some snorting was heard in the room. I will not say who it was though.
On a serious note. Sharon and I have learned that there is a kind of bond between cancer "parents" on the floor. A knowing smile, a nod. We are all fighting the battle with our children.
About a week ago, I met a dad "W" that has a 17 year old daughter that is having a relapse. She does not have the same type of cancer that Hannah has, however she is having the same type treatment. His daughter
"M" is having a hard time. Her immune system is not responding like Hannah's is. In fact her immune system has been at zero for a week. Please pray for her.
Saturday, July 30, 2011
So as you know, I took a break on day 15, and quite frankly not a lot happened. But today we have some activity that is worth telling you about.
Day 14 was the start of the struggle. Hannah's immune system was at about zero and as you saw in the picture of Sharon holding her, it was a struggle. There were several times during the course of the day when she looked at me with the look in her eyes of "please make this go away." One of the hardest days of my life, not being able to make it better.
Day 15 (yesterday) was more of the same. Fever was coming and going. She had developed some sores in her mouth that are very painful, but a direct result of the chemo. The medical staff worked to make her as comfortable as possible, while she battled. We did have some good news, her blood tests were showing that she was winning.
Today was much better, still in pain from the sores, but that can be managed. The Hannah that we all know and love showed up a little today. While it hurts to talk, she has become very good at sign language, and her expressive eyes are working again.
So here are some numbers that will help you. Before she hit rock bottom, her immune system that needed to get to zero, was at 16, and the percent of cancer in her blood was 3%. Yesterday through all of the suffering her immune system was up to 40 and she had zero cancer in her body! Today her immune system was at 140, and still zero cancer!!!!! I feel like Aniken Skywalker in Star Wars One when he is in his pod racer when it starts for the first time and he is yelling "it's working, it's working!!" Yes it is working, with the power of prayer, her toughness, and the medical staff, she is coming back. We are cautiously optimistic. She well have bad days, and we are 2 weeks into a treatment protocol that will last just over 5 months. But right now, today, Hannah is getting better, and we know that with each passing day she will get stronger.
Again the support has been overwhelming. Her room at home is going through a transformation that is hard to describe. We are overwhelmed, humbled and grateful, words can't even begin to come close to describe how we feel.
Please continue to text Sharon to see if she is up to visitors.
Thursday, July 28, 2011
So the kid had a bad day. This morning at about 1:30, she had a fever that spiked at 103.7. Scary. Bring in the antibiotics. We have basically zeroed out on the immune system, and she is fighting like crazy. Tuff kid. Just like her mom. Speaking of Sharon, I do not know how she does it, I come home everyday like a whipped pup, and she it like the energizer bunny.
Obviously we had to worry today with her fever being so high, well, this evening it has been confirmed by the Dr's that it is not an infection, it is just her body reacting to the poison (chemo) being pumped into her body. That is great news, but it does not make it any easier. FYI her temp is normal now.
Mail call. What I learned from this is that sooooo many people care. The nurses learned that too. They have been shocked by the support. The picture above is the mail that was delivered to the room today!! Wow. We on the other hand have not been shocked, just blessed.
I also learned about fancy dinners. Imagine if you will being in a hospital room with your child. A friend brings you a meal, with a table cloth, silverware, the works. An adult beverage is poured into a paper coffee cup with a top, so as not to draw attention. Note to self. Adult beverages, especially the red kind can eat away at coffee cups. It is very important to know this due to the fact that you never want to have a medical staff in your room working on a spiked fever when your concern is the adult beverage that has eaten the coffee cup and is not in a puddle on the floor.
The most important thing I learned is the difference between moms and dads. I am a dad, I have 3 daughters that I would do anything for. They know that. But what I learned today is that when you feel really crappy and want comfort, you go to mom. I think the picture above says is all.
So the birthday party took its toll. Last night, Hannah spiked a fever of 103, so they immediately starting pumping in the antibiotics. Fever is now down to mid 99, so the meds are working. For now, no visitors until further notice please. Visit virtually through text, messages comments and Facebook!
Prayer warriors unite!!
Wednesday, July 27, 2011
Hi all. Today's MVP!! Big Sister Jessie. She is setting up her classroom for the start of the school year, and she took Sharon with her, so Sharon was out of the hospital all day!!! Sharon needed to get out, and Jessie needed the help. Good call Jess!
So the Hannah update. Bottom line, yesterday she did too much, and she paid for it today. As her immune system continues to decline, she is unable to rebound as fast. Many of you have asked why we need to have her immune system go down to zero, so I will give you the non educated football coach answer.
The type of leukemia that Hannah has is attacking her white blood cells. The white blood cells are responsible for the body's immune system. The medication that she is on is designed to take care of the cancerous white blood cells. The medical concern is that other white blood cells that remain might become cancerous to the idea is to get rid of all the white blood cells, and have her body start fresh. That in a nutshell is why we want her to get to zero. Today, she was at 60.
What we have discovered is that her immune system is so low, is that she can not respond quickly. For example. Today she stood up too fast, and got a little dizzy. For most of us that would be a second or two of recovery. For her, that is that start of a potential bad day. Her body is not strong enough to recover. She had a few of those today, and spent most of the afternoon sleeping because of it.
That being said, she will probably hit zero tomorrow SO PLEASE CONTACT US BEFORE VISITING.
Thank you again so much for your prayers and support.
Tuesday, July 26, 2011
Ok, everyone together now, and a one, and a two and a three,
Happy Birthday to you
Happy Birthday to you
Happy Birthday dear Hannah
Happy Birthday to you.
Yup she is 18 and now an adult. We have checked, they will not kick her out of Children's, or at least they claim they won't. However if so many people keep showing up to visit, they might. But don't stop coming, lets see what they do!
As you can see from the pictures, she also got a haircut!
Ok, birthday first! Cards, too many to count. Nurses singing off key, ice cream from volunteers with funny glasses on. All classic. And oh my, her Facebook page, I have never seen so many birthday wishes in my life.
She did receive a special gift from someone named M Mouse with a return address from Anaheim, CA. Yup, Mickey himself sent gifts and well wishes. Books, cards, and some great Disney jammies and clothing. The best however was the Citizen of Disneyland badge. She loved everything!
She decided to get her haircut, and I am so proud that she did. She is donating her hair to make wigs for other kids that are fighting cancer that have lost their hair.
Maggie G came in and cut her hair to an audience, nurses, friend and family were all there, she did a great job. Thanks Maggie!
Sarah is in town, and her trip is a blog post all to itself, I will ask her to write it.
Some business. Her immune system is almost down to zero, which is good. That means however that there are no hugs, and we have a 3 foot rule that means anyone that come to visit will have to give virtual hugs from 3 feet away. We will also ask you to wear a mask. The amount of time that she is at zero is totally up to her system be we believe that she will rebound quickly. After all the faster she rebounds the sooner she comes home. To her new room! Also its own post.
Monday, July 25, 2011
That's right folks, it is day eleven! Skipped right over ten. You know what they say about time flying when you are having fun! And we are having sooo much fun. NOT!
So, Hannah. Not to much has happened. The meds are working. Her immune system has not gotten to zero yet, but it will not be long. The biggest number to me is the % of cancer cells she has within her white blood cells. When we started this she was at 80% of her white blood cells being the mutated cancer cells. This morning she was at 4%!! She is getting there through 3 things, and I believe in this order, prayer, her tuff as nails attitude, and the medication.
She is resting and sleeping more, probably gearing up for the big shindig tomorrow. Oh and for those of you that did not know, HANNAH IS 18 TOMORROW.
I have not seen her today, as I am in Dallas on a business trip. I generally don't like business trips anyway, however this one was more difficult by the fact that I could be be with her. As a reminder to some of you, remember I live is the estrogen ocean. The hospital stay has been no different in that outside one or two men showing up it has been all women. That being said I would much rather swim in the estrogen ocean than be on a business trip.
As stated in the title, there is a lesson from our dog Emma. I was very tired yesterday when I got home and as I sat at the kitchen table, our 13 year old dog Emma brought me her frayed tennis ball, and rested her head on my lap, I saw several similarities between us.
Emma is tired and needs to sleep a lot, as do I.
Emma is faithful, and always feels safe, as do I.
Emma never questions that she is loved, neither do I.
Emma is confused and just wants everyone to come home, as do I.
Emma always is so excited when everyone comes home that she throws her own little party, as WILL I.
Saturday, July 23, 2011
It is now over, the last bit of chemo has been pumped into her. Still taking the oral medication, but for this round, the nuclear stuff is done. If the last 2 treatments tell us anything, she will be whipped tomorrow until late in the day. The final dose will also bottom out her immune system over then next couple of days (which is supposed to happen) and at that point the masks go on! As I have stated before, Hannah is responding according to the book, and her system has stabilized to the point where other meds and fluids are being backed off.
Speaking of masks, as you know, Sarah is flying in on Tuesday, and I am flying to Dallas on Monday and home on Tuesday. Be honest now, how many of you have gone to the airport and seen someone wearing a medial mask. (SARS Alert). I know I have, and I always think to myself, "why is that person so paranoid?" Well guess what, Sarah and I get to have people think that about us, because we will proudly be wearing our masks.
The quote of the day came from Hannah herself. I was ripping out the carpet in her room preparing it for her return. What did I discover? We may have termites!! (any exterminators out there?) I passed this information on to Sharon, and upon discovery Hannah said; "Good thing I have cancer otherwise we would not know we had termites."
Friday, July 22, 2011
Some business first... The routine has settled in.. one more round of chemo tomorrow, which will take her immune system to rock bottom by Tuesday or Wednesday (happy birthday on Tuesday), and then we build her strength back up, and begin phase 2 of the battle from home.
One funny story from today, then I will reflect on the week.
So as many of you know, I have been coaching football for over 25 years. In that time, I have see a lot of injuries, bones, blood, dislocations, joints moving in the wrong direction. Not one time have I ever had a problem with it... In fact I am the type of person that quietly says, let me see that. That being said, we had to change Hannah's dressing on the med tube that is in her chest.
Very sterile enviornment. Masks, gloves, smocks. I am up for this, change the dressing, clean the area, put on the new dressing.. I bet you know where this is going.. About 5 minutes in, I start having trouble... Light headed, having trouble breathing etc... Trying to be tough, I try to hang on, but realize that I can not. I finally say I have to sit down, which freaks everyone in the room out. They continue to work while I break into a cold sweat and almost pass out. Tough Dad right? I guess having a tube come out of your daughters chest is worse than seeing a bone come out of a leg.
Most people would look at this last week and say, wow your life has changed. Yeah it has, but the important things have not. Our faith is secure, we are a close knit family, and we are surrounded by friends. That has always been there, and that has not changed. In reality those are the most important things in life. So I am safe in saying that the things dearest to us have not changed.
Our English language does not have the depth we have been looking for when we say "thank you." Pastor Steve came up with this Greek word for us. Eucaristia which translates to the soul being filled with grace, a sign of unity or a bond of charity. While this just scratches the surface, it is the word we will use.
Eucaristia, may God bless you the way that He has blessed us.
Thursday, July 21, 2011
The routine is settling in. Hannah will have her second round of chemo this evening, so today is a rest day, which is very important. Her blood work is coming back from every test and it is doing EXACTLY what it is supposed to do!! The Dr's are beating the crud out of her immune system, so as that becomes weaker (which is what we want) she will require more rest, and we must take more precautions. Within the next few days, her immune system will be bottomed out, and we will ask for fewer visits, again please run all visits through Sharon by texting her.
When you do visit, please stop by the kitchenette a few doors down from her room and wash your hands. As you enter the room please use the hand sanitizer right by the door. At some point we will being asking you to wear a mask.
Her attitude is good and the rest of us are hanging in there. More than anything else right now is that she would like to be with her friends performing at "Anything Goes." As the day wore on, her appetite came back! One thing only had tasted good, watermelon. Go figure. The teenage junk food diet was on today. Lay's potato chips, chocolate covered pretzels, gummy worms, and tv dinners. Only a teenager could handle that!
A few funny stories from today:
Dr W, a member of her care team came in this morning all smiles...He was telling us about the blood work. He then asked about our dog Emma, because obviously animals can compromise Hannah's health. We assured him that Emma was quite old and very rarely leaves her pillow, so at the most she might look in Hannah's room from the door. He was comfortable with that so he left. He returned right away, and said, "I understand you have chickens." (I guess he found out about the Cobley farm). Sharon assured him that the chickens are not in the house, and in fact they are in the farthest location away from Hannah's room possible, and while Hannah may have named them, she does not even go close to them. He then asked if there was anything else he needed to know (he must think we live on Green Acres), and we told him that the was no other livestock that he needed to worry about.
Number 2 happened when our good friend Janis came by with some loose fitting t shirts and under garments for Hannah. The tube for her meds come out of her chest, and can be uncomfortable when clothing is too tight. The shirts are great! Janis was pulling the garments out of the bag, and she, Sharon and Hannah we looking at them and holding them and talking about them the same way a guy would look at a baseball card, so I was obviously way out of the loop. The comments from Hannah were classic, ok, ok, this one is a granny bra, etc. The best was saved for last when she pulled one out of the bag and informed Janis that the bra was no good at all by saying, "this is a maternity bra." I of course looked up and asked if there was anything that I should know. A good laugh was had by all.
The final one came when Hannah and I were left alone while Sharon got out of the hospital for a bit. Me being the dutiful dad that I was getting the TV ready with a movie, but the remote had fallen behind the TV. Now, Hannah has always had a very good sniffer, however over the last 5 days it has become HYPER sensitive, she can smell anything and everything. Well as I bent over the back of the bed to get the remote, Hannah said. "No offense dad, but you stink. Get me the barf bucket!"
The balance of the day I was concerned with my hygiene and upon arriving at home showered with boraxo soap.
Just got word, had chemo treatment number two was completed about 2 hours ago and she is doing great! God is good, thanks for the support.
Wednesday, July 20, 2011
Hi! Sarah here, Hannah’s big sister. In the lineup, I’m right smack in the middle. These past few days have been the biggest whirlwind but frankly, nothing we can’t kick straight in the rear. Right? Right! Us Cobley girls have always been a force to be reckoned with and we’re about to prove it. Hannah is an infectionous soul, the only person I talk to when times are tough, she means more to me than I think she’ll ever really know. (except for maybe now, cuz I’m sure she’s reading this..Hi Han!) So let’s get down to the nitty gritty. How do we deal?
Let’s keep it light. She loves anything that will give her a good chuckle. Funny stories, pictures or gestures will do. If you’re able to visit her at PCH, bust out the big guns. While prayers and positive thoughts are SO appreciated (and needed! So keep ‘em comin’!), smiles and laughs is what cures a hurting heart. I’ve been able to talk to her each night on the phone for about 30 minutes and every single time she mentions a friend that’s made her laugh. It’s made her day, guys. There’s gonna be days where she doesn’t feel good and can’t see anyone, but that doesn’t mean she won’t read a text or Facebook message that could make her giggle. PS: Just because she doesn't respond right away doesn't mean she didn't see it.
We truly can’t thank all of you enough for the incredible outpouring of support and the power of prayer. I’ve always known we were lucky girls, but oh my, all of this love really is God’s grace.
Dad here. I few business notes.
One day after Chemo, all things are going the way they are supposed to. As the treatment continues Hannah's immune system will be compromised. If you have the slightest sniffle, cough etc, and even if you think it is allergies, please send your well wishes via text email, blog etc. It will get to the point where we are all wearing masks etc, so lets just avoid those situations. But for now, keep showing up, again please text Sharon first to make sure Hannah is up for it.
God's grace is amazing. We receive gifts, wishes and the like that we never expected, all dedicated towards Hannah's care. Thank you so much for your love and prayer.
PS... THE BRACES ARE OFF
Tuesday, July 19, 2011
As I stated in the previous post, today's post is what actually happened today. We kinda thought it was important to bring you all up to speed on each of the previous days. We also know that the time over the next days weeks and months will get boring, Which according to Dr Tom is what we want, boredom. Imagine the Cobley's lives boring? Whatever shall we do? From this point on, posts here will be based on daily activity. If things happen we will let you know, if not, rest assured that all is well and Hannah is getting healthier. Oh, and before I forget, keep the cards, notes, and well wishes coming they are wonderful, however NO flowers or plants. They are not allowed in the room due to potential bacteria. We have been taking pictures of them and bringing the pictures to Hannah. For those that have sent them a huge THANKS.
Today was a big day, for several reasons. Based on the picture above, can anyone guess what started today? One guess. Anyone? Yes you are right, chemo started today. As you can see by the picture, Hannah, only as she can, be was ready for it. So far no negative side affects.
The treatment that started on Sunday is doing exactly what it is supposed to do. Her blood work (which is taken every six hours) gets better with every test. The cells that are supposed to die are, and those that need to have greater production are. If fact we were told by the team that she has gotten to this stage of wellness faster than expected. A major sign that God is working and guiding Hannah.
She felt great all day, more herself, but she does get tired with too many visitors. Please keep visiting but check with Sharon first via text, if you need that info email me, and please do not be offended if we say no or limit your visit. Based on the meds, Hannah's energy level can vary greatly in short periods of time. All decisions that we make are totally based on her care and her rest needs.
The most important news of the day came in at about 3pm. Her primary care doctor, Dr B came into the room and to check on Hannah, stopped in mid sentence, and the conversation went something like this;
Dr: "oh crap you have braces"
Hannah: "I have had them the entire time I have been here"
Dr: "I never noticed them before"
Hannah: "well I have not had too many reasons to smile"
Dr: "well you can't have those"
Apparently braces cause concern for infection, obviously something that we need to avoid. Bottom line, Hannah's orthodontist is coming in tomorrow evening and REMOVING HER BRACES. She is so excited she can not stand it, and I guess after 7 years of wearing them I don't blame her.
Again thanks for your love and support we appreciate it more than words can express.
We just finished the first full day of treatment, and while it is making her feel not so hot, we have seen some good results. Her body and blood are reacting they way that they are supposed to! Things are moving in the right direction. Reality has also set in though, and we know that this is not a sprint, it is a marathon and we have to pace ourselves, but Hannah has had a very strong start to the race.
We have started to get into a routine which is good because our lives will be based in routine for quite awhile. For those of you that really know us, you will understand this is not the easiest transition for us in that our lives are anything but routine.
The support from our friends and family has been overwhelming. The doctors and nurses and the entire staff at Phoenix Children's are simply the best.
Back to the reality part, Sharon and I are going over our work adjustments and what we will be doing. Sharon will probably take family leave from work which we will try to make as flexible as possible to make sure that it can match with the treatment schedule.
My work schedule on the other hand is yet to be decided. The college football and volleyball seasons start here in a few weeks, and that is usually when I light my hair on fire and go 24/7 until Thanksgiving. My guys at work are great, and I know that we will work something out.
Jessie will be working on Hannah's room make over. Our good friends Bethanne, Allie, Mary and Katie are also on the project. New paint, bed, rip out the carpet etc.. While it will be hospital sterile, I am sure that it will not look like your typical hospital room.
Sarah has a post that will be coming soon, and rumor has it that Hannah will as well.
Chemo starts Tuesday we will let you know how that goes, and oh by the way, T minus 7 days until Hannah's 18th.
Monday, July 18, 2011
Today was a good day!! We got good news, Hannah has the good kind of leukemia (if there is such a thing) I am now going to get a little medical on you. She has APL. Basically the type of leukemia she has causes two chromosomes to mutate and then the cells attack her platelets. A few years ago this was considered a "bad" leukemia, but now it is VERY curable.
She has actually started treatment today! With all leukemia Chemo is the main type of treatment, however in Hannah's case she will actually have less Chemo and more of another drug that will actually work directly on the white blood cells making them mature faster so that the two chromosomes do not have the opportunity to mutate.
Hannah has also been placed in a clinical study (more of God's guiding hand) which means more people will be monitoring her progress.
The treatment schedule is rather rigorous. She will be in the hospital for the next 30 days. She will then be home for 90 days, continuing her treatment. Back in the hospital for 30 days beginning in month four, then continuing treatment at home in months 5 and 6. When we get the clean bill of health after 6 months she will be on a monthly maintenance program with clinic visits.
Once we started treatment it was as if all of us had a weight lifted, we could now get after it. Hannah started to be her old self. In fact, when a friend of hers sat on one of the many tubes on the bed, and a beeper when off, the friend said "what was that?" Hannah's response.. "I am flat lining"
Speaking of friends, we are going to limit non adult visitors to 2 at a time, and please text Sharon before you come. We have learned over the last few days that too much "energy" in the room wears Hannah out.
Your support is incredible, thank you so much.
It is official, Hannah has leukemia, and now the hard part, hurry up and wait. The important thing to know is what type of leukemia you have because treatment varies greatly within the different types.
The waiting was the hardest. I of course wanted to get started kicking the crud out of it, but our very good friend Dr Tom explained how important it is to find out the type before beginning treatment.
In the meantime we started the "background check" on the Dr that is taking care of Hannah. As it turns out, Dr Boklin is an expert in the type of leukemia that they think Hannah might have (still waiting on lab results). We were also told by Dr Tom that if he was to choose the Dr for Hannah, it would be Dr Boklin. God's hand guiding us again it would appear...
We also discovered that we will probably be here for about a month. Awesome..More hurry up and wait...
Sunday, July 17, 2011
So, on Thursday evening, Hannah started showing signs of having the flu while at rehearsal for her play. She was due to play the role of Bonnie in the play "Anything Goes". She was not happy at all about not feeling well due to the fact that she missed the midnight showing of Harry Potter.
The symptoms had not improved by Friday morning, in fact that had kept her awake all night, so we took her to the Dr on Friday. Based on her symptoms we thought that is was either appendicitis or a cyst. the Dr told us to "lay low" until the afternoon and if we did not get any improvement to go to the ER to have her checked.
At about 2pm with no change in how she was feeling we went to the ER, and waited...
So after waiting for a few hours, we are told that her blood work needed to be done again because "it couldn't be right." Guess what, on the second round of blood work the results were the same as the previous test.
The Dr came into our room and asked us if we were "praying people". Yes, was the answer. The Dr then said, "there is a reason that you are here today... what you came in here for she does not have...we have found something else, and if you had not come in, if may have gone unnoticed. She is already a miracle"
We then learned that she may have leukemia...
At that point the walls started to close in.
While the medial staff was deciding about care, Hannah and I had a conversation.....
Me: "are you scared?"
Me: "of what?"
Hannah: "you know?"
Me: "no I don't, I am not you, what are you scared of?"
Hannah: "that is it leukemia"
Me: "and what if it is?"
Hannah: (no answer)
Me: "we beat it, we are Cobley's that is what we do"
Long story short, we were transferred to Phoenix Children's Hospital and admitted with a preliminary diagnosis of leukemia...
At times we are spending so much time communicating with our support system that it is taking away from our primary concern, Hannah's care.
The support has been overwhelming. We have always been care givers, so this is the other side of the fence for us, and it is very humbling. We now know how much it means to a family when a note is sent of "praying for you" or "what can I do to help". The two simple words of "thank you" do not seem like they are enough.
This blog "Hannimal the Animal" will be our way of communicating to all of our friends and family her status, and what is going on in our world. Understand though that there will be times when we as family or individually may or may not want to, or have the time to, or be able to, respond to your questions and inquires. That does not mean that we do not want to, it just means that we can not at that time.
We will try to update her status often most likely daily early on but as we get into the treatment that may change as her status probably won't will be that different day to day. We will start tomorrow by bringing all of you up to speed on her diagnosis, course of treatment etc. What we know today is that we will be here at PCH - Phoenix Children's Hospital for the next month - yikes, we are movin' in! At this point Hannah is wanting and enjoying visitors this may change as we progress in to her treatment.
This blog will be very "Cob" like, meaning very real. If we are crying, laughing, singing, dancing or yawning, you may read about it.
Thank you for being part of our lives and loving Hannah and the wonderful creation that she is, and will continue to be.