School Already?

Day 462:

I awoke early this morning to,.... noise and bright light bulbs. What happened to the birds singing outside? What happened to the sunshine gently waking me with the warmth of the rays? What happened to the rollover, then back to sleep for an hour or two? It was still dark out!

First day of school can be determined in our house by one thing: I entered the kitchen to pour a pot of coffee down my throat only to be greeted by Hannah, already showered, dressed, and fixing breakfast, "Good morning Dad!" I wanted to take that early morning grin of hers and bury it in an early morning nap.

"Must be the first day of school?" I said as I gripped the coffee pot tightly hoping to end this morning nightmare.
"YEP! And I can't wait to see EVERYONE!" more smiling.


Kim and I have been spending waking moments over the past couple weeks at school preparing for the start. Just like summer,... it all went by really fast. Too fast, because I'm now getting up when indoor lighting is required.

I've also had the opportunity to dabble in senior pictures over the past few weeks - which has been a lot of fun. I've always enjoyed taking photos of the family, after all, it's like fixing something around the house - if I do a poor job, I only have myself to blame. I tell ya,.. taking photos with someone as photogenic as Hannah (the senior Hannah) makes it seem easy.

Later this week Hannah wraps up her cookie run, I head to the Harleyfest in Milwaukee, and Kim preps for her colloquy final.

I'll post the biker photos when I return.


Peace and Prayers

Breaking the 1k Mark

Day 456:

"Dad! I'm about $50 away from going over one thousand dollars!" Hannah was like you would picture a kid banker to look like - sitting in the middle of the living room with a bundle of cash around her.

"Nope. Wait,.. I need to count this again," came another update moments later.

"I'm over one thousand!" she proclaimed.
"That's fantastic - now leave me alone,.. I'm trying to read a cookbook out here!" I have a short attention span when it comes to reading a recipe, and bad eyesight when it comes to reading the fine print of teaspoon or tablespoon.

So it's official - we've hit the halfway point of her summer goal with just under two weeks remaining. Hannah will have three more Sales on South State before wrapping the Cookies for Cancer up with Jenna Mammina at the Acorn Theater on August 30th.

Speaking Tennis

Day 454:

"I don't know if I can do this," as we sat and watched Sam finish his last match of the day in a see-saw three set match,...Kim's nerves had been tested through the course of this week as Sam tried out for the tennis team and had his first tournament, already.




Alex and Sam ran the gamut as freshmen, going through tie-breakers, playing a top ranked team in the state, a three setter to wrap up the entire tournament as the last on the courts,... and placing third in their flight. The team placed 2nd (without even having their number 1 singles player there). So to respond to Kim's nerves, I simply reminded her, "What if my mother were here?" That pretty much puts things into perspective.

The best part of the day,...everything!







WWSD

It's always wonderful to have role models. Those who have been there before you, that you look up to, that you respect,... that you use as your life compass. We saw it with Sam this weekend, but we had seen it about a year ago with Shanna and Hannah.

In Hannah's case for her past speaking engagements with the United Way, it's been great to refer to the old stand-by of 'What Would Shanna Do?' As we stood before another group, I reminded Hannah that people would more than likely want to SEE her arm, which was covered by her splint that she wears. "No Dad!" apparently the discussion was over when it came to my prodding her to remove the splint.

What she failed to realize was my ace in the hole, my trick up my sleeve, my,... trump card: "Well, what would Shanna do in this situation?" with a raise of my eyebrow I knew I had asked the question that already had an answer to it.

Not even a response,... just a gaze, followed by the handing over of the splint. Hannah went on to give her brief speech,... and kept her left hand over her right forearm to cover it. Little steps, little steps. This week we're off to St. Joe High School to talk to teachers.

Foto Friday

Day 452: We would like to apply all this training towards a medical internship.

Living United

Day 452:
The United Way has asked Hannah to be one of their speakers this year. Through the Berrien County Cancer Service (which receives support/$$ from the United Way), Hannah was able to receive blood draws through her port, rather than her arm (which just resulted in a lot of crying and several attempts to find a vein). Our nurse, Connie, would come right to the house to draw blood from the port, which in turn gave us the count information we needed. Before we were told about Connie, we had to travel to Kalamazoo, because no one in this area had the training to access a child's port. I know,.. strange huh?,... but that's what we were told.


"Aren't you coming with me?" Hannah was about to give her first United Way speech to a group of UPS drivers, as she walked towards the drivers standing in the middle of the warehouse floor.

The drivers had been trickling in for the past 30 minutes as we stood by with our United Way representative, Retta. All dressed in their customary brown, one by one, two by two, they strolled through the door to take their place among the other drivers at the end of the open bay.

"Okay, we're ready to get started. I'll gather the drivers for stretching first," Brooke the foreman motioned us to follow him . Who knew that the drivers warmed up before they hit the streets? I would have been even more impressed had they performed a little two mile run. "Let's go everyone circle around for stretching!"

Following the stretching and a brief announcement, Retta stepped forward (in the middle of the sea of brown with Hannah) and gave her talk on how the Untied Way assists in our area, then she introduced Hannah.

Hannah doesn't have the projective voice just yet, which caused the brown circle to close in tighter around her as they tried to listen to her over the other noises associated with a package delivery warehouse. I saw the same scene in the Lion King with the hyenas - only the drivers were WAY nicer,... and rather than pounce, they gave Hannah an applause when she finished.

"Well,... what did you think?" I was anxious to hear how she felt about the experience.
"They made me nervous when they all moved in! But,.. it was fun," she had that smile on her face that clearly said, Yes, I did it!

One down, more to go. "Are you busy tomorrow?" Retta had another company in mind for Hannah to talk to.

School Time, Already?

Day 451:

"Pajama Day,... again?" I was beginning to notice a trend to the end of summer as I walked downstairs to find Hannah and Max camped on the couch.

"Yep," that was all the reply they could manage without disturbing their 'show'.

Something about the end of summer and the start of school makes you want to sleep in longer, lay around more than usual, and wear your pajamas all day long. It's the calm before the storm as homework looms in the near future, sporting events become 'dinner out', and rise and shine is another way to politely say, GET UP before I drag you out of that bed!

Another visual sign in the house of summer coming to an end is that darned calendar clinging to the fridge. The more writing on it, the more defined each day becomes with the 'have to' items. Like for instance,.. this morning next to Kim's name it read: SCHOOL. "Oh,.. that's where she went! Now who's making breakfast?"

Also as the summer winds down, Kim and Hannah make plans for the last big push for Cookies for Cancer. Hannah has landed somewhere around the $900 mark with a few more weeks left and the big Jenna Mammina concert at the Acorn Theater. With her goal set at $2k I would say she did very well for her first year out!



I must leave you with this: The face of a teenager when trying to be kissed by his mother.

Foto Friday

Day 446:

LaSninner ala Jack

The arm prep before testing.

The Crew

Day 445: One of the main reasons we chose Mayo,... the team aspect. These are the doctors that discuss Hannah's well-being. From oncology to surgeons to specialists to radiology-oncology, they oversee and discuss her protocol.

IF we added in all the physician assistants, residents, fellows, and nursing staff, we could easily have a roster equal to a professional football team.


Dr. Rodreguiz, Pediatric Oncology
Our lead doctor in our oncology treatment.

Area of Interest: Bleeding Disorders — Hemophilia, von Willebrand disease, Platelet disorders; Thrombophilic Disorders — Lupus anticoagulant, Deep vein thrombosis; Stem Cell Transplant; Leukemias; Lymphomas






Dr. Arndt, Head of Pediatric Oncology
Has watched Hannah's progression since the age of two.

Area of Interest: Rhabdomyosarcoma, osteosarcoma, Ewing's sarcoma, Wilms'tumor, new drug development, stem cell transplant, neuroblastoma, unusual sarcomas, lukemias, anemias.






Dr. Khan, Pediatric Oncologist.
Best advice: "I don't look at statistics, I look at patients."

Area of Interest: Hematological disorders. Pediatric Oncology Stem cell transplants for malignant and nonmalignant diseases







Dr. Laack, Radiology Oncology
We actually switched over to Dr. Laack after our initial visit and have never been happier with her care of and for Hannah. They even have the same birthday!

Area of Interest: Pediatrics, female/gynecologic malignancies, central nervous system tumors






Dr. Shives, The Tumor Surgeon Specialist
The man to have when you need a tumor removed NOW.

Area of Interest: Musculoskeletal tumors.









Dr. Shin, Hand Specialist
Rock & Roller - loves the color PINK!
Main Man when it comes to Hannah's Hand-Arm Reconstruction.

Area of Interest: Vascularized bone grafting, reconstructive microsurgery, wrist reconstruction, brachial plexus injuries





Dr. Bishop, Orthopedic Hand Specialist, Pediatrics
Our soft-spoken doctor, who always likes to think through every angle first.

Area of Interest: Reconstructive Microsurgery, Brachial Prexus Injury, Vascularized Bone Grafting







Dr. Shaughnessy, Pediatric Hand Specialist
New to the Line Up for further reconstruction options.

Area of Interest: Pediatric Orthopedics, Scoliosis, Pediatric Trauma, Gait Lab Analysis, Vascular Malformations of Extremities, Pediatric Sports Injuries

All Clear Ahead

Day 444:

So there we were, sitting in the doctors office, following Hannah's MRI, when Dr. Laack says, "We can schedule an appointment for tomorrow morning to review the results, or I can just call you in the morning once I get them from the radiologist and look at them myself."

I could tell Kim was hoping for door #3. You know the one that says, Here are the results NOW!

When you're looking at a 8-9 hour drive the call seemed simple, we opted for the phone call. This way we could get up early and hit the road. By the time Dr. Laack called, I could have the family half way to the eastern coast.

Fast forward to night time in the hotel: "You're not wanting to get up early and go, are you?" I was using my husband-of-the-year ESP through a wife's silence and body language.

"No, not really. What if we get half way home and the call is to come back?" she had the look of concern and anxiety all over her.

"We turn around," you know how they say husbands problem solve instead of listen,... well, I had just said the words that proved I wasn't really listening, and I knew it as soon as I said them.

We hung out in Rochester for a great deal longer than the planned departure time, waiting for the call on the MRI. We waited,... cleaned the hotel room,... waited some more,... packed and repacked the car,... then waited a touch longer, before finally hitting the road.

By the time we had landed at the Minnesota boarder I just knew that we couldn't wait any longer. Partly because I was about to drop into a cell phone dead-zone and the other part because Kim was just looking sick to her stomach playing the waiting game. You just want the news that you've past another scan.

After speaking with Dr. Laack, the news was,...excellent scans! We are officially one year out which is significant because the first two years are the most critical for the tumor to come back locally.

Peace and Prayers

Shocking

Day 443:

Greetings from de Sota.

"Hey,...how did de pokes go dere?" I was being my typical inqusitar self.
"De went well, eh. Like I yelped a bit, but survived," dat's the daughter's reply to me.

"Okay, so now wut?" I was check'n wit de Mrs. for a little clar-ifa-cation on de plan.
"Ya well, we wait and see dere," she's so precise in her de-lin-ee-ation of de facts.


Okay,... so dat was yesterday, eh. Now were sittin' at de hand specialist and dere seems to be a mod-ifa-cation in de plans, you betcha. It ape-ears dat we will be stayin' annuter night in order to get in dat MRI.

As for today,... oh sure ya, keep de prayers coming for good results and clear scans, you betcha. We'll hopefully have news by l8ter today (saw dat one on a license plate of a John Deer).

CampTastic

Shanna, Lauren, Danielle, and Hannah - Survivors at Camp Jornada

Day 442:

"How about when people say It's got to be good to be back to normal," a parent near me spoke up.

We were attending a parent meeting at Camp Jornada yesterday, when our guest speaker, Dr. Creagans (a top oncologist in the nation) asked what we as parents had to reveal to him in terms of what we go through. Dr. Creagans works in the adult oncology department at Mayo and wanted to learn something from the parents of children with cancer.

Camp Jornada is a week long camp for kids and their siblings dealing with cancer. We went to check it out this time and possibly for the kids to go to next year.

"Yeah,... that's a tough one. There really is no normal once you've had this experience," the doctor said with a sense of bewilderment himself. He's had thousands of patients over the years and can understand the feelings that accompany cancer, but he himself has never had to deal with it within his immediate family.

One of the things I will take away from his speech is that we can take this cancer experience and put it in a box and place it on a shelf (metaphorically). To not let cancer define who you are now.

It's these type of meetings that just help bring you back to center as you share and listen to other parents who go through the same things. Dr. Craegans equates the gathering of people sharing a common thread to that of AA (started back in 1935) - alcoholics drawing strength from others who have dealt with a lot of the same issues of the disease.


Hannah had a visit with her radiology-oncologist this morning and while things went very well, Dr. Laack would like to have scans done. She mentioned the fact that Hannah's tumor has a high recurrence rate within the first two years. So moving scans back to every 6 months seemed a bit unsettling for now.

"Will the EMG hurt?" Hannah probed as many people in Dr. Laack's office as she could. Most had no idea. Dr. Laack was a different story.

"Well,..... yes," Dr. Laack didn't want to hide a thing. "It will feel like bee stings when they are putting the needles in. Then when they begin the electrical pulses, with your arm already being sensitive, it will hurt more than say a typical person." Hannah had a smile on her face that looked like a cross between wanting to be happy that Dr. Laack had been honest with her and that of I'm panicked and don't know what else to do, but smile.

Currently Hannah's in having her EMG done. "Hannah Kelly!" the voice over the loud speaker resonated through the waiting room. We all got up to go back with her, but as we approached the nurse, she gave a rather stern eye in my direction. "Only one parent may come back for this one," she said glancing at both of us as if there was a debate to be had between Kim and myself. Nope - not a word,... I just turned myself around and got comfy.

Electfornopain

Day 439:

The Word of the Day is,.... "Electromyography".

Phonetically speaking I believe you pronounce it: elect-tro-what? Or,.. EMG if you're looking for the short terminology, or happen to find yourself on the stage of the National Spelling Bee. It's the testing of the electrical activity of muscles. One of the concerns with Hannah's arm and hand is the progress at which the 'helper hand' is able to,... help. On our last visit the doctors didn't seem overly impressed with the progress and even hinted at the fact that paralysis in the fingers had begun to set in. Paralysis is not bad if you find yourself digging in a tackle box full of sharp, barbed hooks,... but in the general scheme of things, it's not good.

With the EMG, small needles are placed into the muscle, from her elbow down to her wrist, to measure electrical activity. The needles are smaller than the normal needle because they don't need the opening for medicine to go through; however, the experience of needles and electrical impulses is not very pleasant from what we've been told by those who have experienced it first hand.

This trip to Mayo will be rather quick with a two day turn around. A number of people have asked about scans. We are now on a 6 month scan (which will take place in November). This trip is all about the reconstruction and progress made with splints and therapy - and maybe a stop at a Harley dealer.

When we return, Hannah has a planned visit with a wonderful group of ladies who are planning on helping her with cookies for the Jenna Mammina concert. She will be talking to a group from the United Way and sharing how through them, we were able to receive a nurse for in-home blood draws.



On another topic, I did hear from Pam (aka Madi's Mom) as well as an update from her caringbridge page - Madi is now considered to be in remission. What a blessing and answer to prayer!