Junior National Youth Leadership Conference

 

7.22.13:  2:50 PM

It seems that over the last year I have been pretty bent on new experiences.  I have adopted this new philosophy that I am a human-doer and not a human-being. So we broke away from our Independence Day traditions and tried some new things.

We opened the boat (Yes, the first time all season) and went out to Mill Creek for the boat parade and fireworks on the 3rd. The temperatures were unseasonably cool, which was perfect for Davis.  Davis can't get in the water due to the possibility of line infections. The bacteria is the water can get into his blood stream and cause a port infection. The heat also affects Davis because of his chemo. He just wilts. So you can imagine the torture of sitting on a boat with the sun beating down on you while your family swims and tubes.  In addition to that, it wasn't until after we purchased the boat that we realized that Kyle suffers from horrible motion sickness.  He will suffer along after a couple of Dramamine, but he is so groggy, he can't enjoy much. Needless to say, we don't boat much anymore.  But this night was perfect.  There was little wake because of the parade, which was good for Kyle; and it was freezing, which was good for Davis. We tied on to family, and the kids played with their cousins.  It was a night that I won't soon forget. 

 

The next day, instead of going to the park, we stayed home and did nothing.  Sometimes I underestimate how awesome doing nothing is. That evening, instead of going to fight the crowd at the public works, we shot off some beauties at Kyle's folks home. We loved it! We "oooo"ed and "awww" ed from the back porch. 

On July 5th, Davis and I headed down to St. Louis for his chemo and check-up. Davis has been hoarse for a few months now, and his oncologist planned to revisit the possible reasons why. After his check-up, it was decided that Davis needed to be seen by an ENT at Children's. It was Dr. Schapiro's and Dr. Huang's belief that Davis might be suffering from vocal paralysis caused by the chemo Vincristine. Somewhat normal side effect. After an ENT completed a check-up on 9th floor in the hem/onc clinic, we were escorted down to the fifth floor to the ENT clinic where Davis received an endoscopy.  It was pretty fascinating. The fed a camera tube through his nose and positioned it right over his vocal cords, and then the doctor started asking him questions.  We were able to watch his chords and his throat move.  The whole procedure took less than three minutes.  The two ENTs performing the test determined that Davis did not have vocal paralysis; he was suffering from inflammation and irritation caused by acid reflux.  Davis was placed on Zantac and given some diet restrictions.  It's only been a couple of weeks, but he is doing much better already.

After the long day at Children's, we headed to The Hill to eat at one of our favorite restaurant.  We love the place, and it's a real treat to go. 

On Saturday the 6th, Davis and I headed up to Chicago because we were going to fly out to Boston early the next morning.  Davis attended the Junior National Youth Leadership Alumni Conference. You might remember that he attended the initial one in Washington DC last summer.

During the conference, Davis spent time in Plymouth, Salem, and Boston. He did some fantastic sight-seeing. He visited Plymouth Plantation, Plymouth Rock, Salem Witch Museum. He walked the Freedom Trail and spent time on the USS Salem.  For his birthday, the whole crew surprised him with a giant ice cream sundae at Hard Rock Cafe. 

 

Davis seemed to enjoy DC more than Boston.  The alumni conference was comprised of seventh through ninth graders and was much more labor intensive. They had three and four hour exploration meetings, which are very similar to school.  Davis wasn't cracked up about working on his vacation, but he managed.

Davis was chosen to give the thank you closing speech for the closing keynote speaker of the conference, Brandon Greene. The faculty advisers said he did a wonderful job.

I wasn't around much. Actually, parents aren't allowed to be around. Independence cultivates leadership, I guess.  I had a mini vacation of my own.  I think I was more excited than Davis was for this trip. I love history, especially American history, so I made good use of my time hitting all of the historical stops I could. I totally looked like a tourist. My camera about my neck, backpack, umbrella, tennis shoes, and one giant map in my hand. I managed to make it to Plymouth Rock. I toured Cape Cod Bay. I visited Old Ironsides on my way to Breed's Hill.  I saw the House of the Seven Gables, and where Alexander Graham Bell invented the telephone. I went to the Salem Witch Museum, and visited Simon Bradstreet's, Paul Revere's, Samuel Adam's graves. And the list goes on and on. One thing I didn't do? Eat a lobster. Can you believe I never got around to it? By day four, I was tired of fighting the Boston traffic and was ready to come home. Davis and I both missed our family.

 

 

 

Kyle and Annakate took the train up to Chicago to meet us.  They headed up early, and Kyle took Annakate shopping. She loved this. They met us at the airport on Friday, and we drove up to Wisconsin to see Kyle's brother and his family. We had a blast.

 

 

This past weekend, I completed my first 5K via the Indianapolis Color Run. Actually, there was some walking (too many people) so I am not going to officially count it as my first 5K. I went with a few friends for some girl time. It was so stinking awesome. No pressure, just pure fun.

Davis celebrated his birthday with family yesterday. It is always so wonderful to get together and birthdays are great reasons to do so. He had a great time. We all did. 

 

It's hard to believe that summer is nearly over. I think the kids and I have done a wonderful job embracing the "work hard, play hard" idea as we have played pretty hard this summer. And in all fairness, Kyle has worked pretty hard and sleeps pretty well this summer. Poor guy. He sure doesn't get to play much. Although we don't show it enough, we are so appreciative of all he does for us.

Davis goes back to St. Louis the first Friday in August. He will have to get a LP (Spinal tap) then. We will also meet with the prosthetic specialist to adjust his port cover, so he will be ready to go for PE when school starts.

I just thank God for good health. Davis is doing so amazingly well. We are just so blessed. Thanks for the continued prayers. 

We will keep you posted.

Taking Donating to the Next Step

7.22.13:  10: 45 AM

I have toyed with the idea to become a bone marrow donor for some time. I know several who are.  I have read and re-read the website, but I have always managed to dismiss the notion since finding a donation service area was a bit of effort.  However, I have always kept the idea in the back of my head and close to my heart. 

While in Nashville a few weeks ago, I ran across a donation booth at a flee market of all places.  So I did it. I registered. It took all of five minutes. A painless mouth swab and a bit of paperwork. I am now in a database of donors to be used. 

I know that if Davis were to relapse -- not that he will because we trust in God that he is healed -- he would need a bone marrow transplant, and if Annakate wasn't a match, he would be at the mercy of the donor bank.  And that alone is reason enough for me.

If you are interested in learning more about bone marrow donation, I have attached the link to the website.  If we are all proactive, I know we can do a small part in minimizing or eradicating blood cancer. 

DKMS Bone Marrow Donation

Summer Vacation - Emphasis on Vacation

7.3.13:  4:51 PM

DISCLAIMER:  Due to family time that starts in nine minutes, I am unable to proofread.  Please kindly disregard all typos and grammatical errors.  You're the best!

We have seriously been irking out every minute of vacation from this summer vacation.

Davis attended Camp Rainbow. It is a free camp for children with cancer and blood diseases. The camp is held outside of St. Louis at a state park. Nurses, various health officials, and volunteers donate their time to making this camp a success. Each camper has his/her own camp counselor, and there are activities planned every day.  Due to privacy policies, I can't show you many of the pictures that Davis took, but he was able to capture quite a bit of his camp week. 

Davis LOVED camp.  He is already planning to return next year. He did experience some homesickness at night, but a lovely nurse, Jill, looked after him. She would call me during the day to give me an update. Did I mention that there was no cell phone reception, no wi-fi, no means of communication?  The lack of communication in part is to make the camper independent and to give parents a worry-free break.

Davis swam every day. He participated in archery. He did crafts with a little girl that he befriended in the hospital last year in March. (They were in the St. Louis TV news story together.) He wrote a song with a group of people. He learned a bunch of silly songs and chants. His favorite part was the food. The camp had catered meals brought in. He said he ate Olive Garden salad nearly every day, and his favorite meal was when the culinary school of St. Louis catered.

 

Davis was blessed enough to meet a few professional athletes.  He was able to meet Andy Van Slyke. In the above picture, Davis is holding one of his Golden Glove trophies (I think he won five.). Davis also met Brian Elliott, the goaltender for the St. Louis Blues. Mr. Elliott autographed a card for Davis; Davis guards that card.

 



 

Before we took him home on Friday, we were able to watch the camp talent show and see Davis interact with all of his new friends. Davis and his bunk mates and counselors had a rap war.  Davis performed his now famous cheese rap, and of course, the crowd went wild. He also performed a song  that he wrote with another group.

Annakate made the point to turn to me during the talent show and say, "Mom, you're crying." I couldn't help it.  The counselors, many of them twenty-something volunteers, have hearts of gold. They sacrificed their time, energy, pride (Yes, it's hard to look pretty or handsome after five days of camp.), and talent for the betterment of the little girls and boys who have met adversity of some sort.

 

I was so moved by the love and optimism I felt in the ninety degree mess hall. Every child - no matter the treatment or stage, or the disability caused by cancer, hair or no hair - fit in; everyone belonged there.  Davis belonged there. Lots of little children performed.  One little girl, maybe six or seven, sang a little song she wrote, "You can do it. You can do it. You can get through it."  And that is when the tears began to fall.  One girl sang, "Beautiful" by Christina Aguilera. I couldn't see her because she was sitting in a wheelchair and the others in front of me were blocking the view. The lyrics could not have been more appropriate for such beautiful children. I was most moved when a girl about Davis's age jumped up to dance the Cupid Shuffle.  She didn't have a CD of the song, so one counselor announced, "Hey counselors, can we help her out with this one?"  And before you know it, the counselors were banging out a beat and singing it for her. The campers joined in. She did an amazing job.  Singing, laughter, smiles, joy filled the overly crowded room. I shifted my weight because I had been sitting on my foot to get some height, when I caught a glimpse of the dancer.  She had one leg. The other was prosthetic.

Look under the "c" in "camp".

I can't thank this camp enough for creating such a positive atmosphere and experience for my son and so many other amazing children. This camp is amazing. There are so many moving, heart-shaping, life-altering experiences that I can only credit to cancer. I share only a fraction of the touching moments, heroic acts and deeds, and feeling we encounter. 

Caught this rainbow on our way home from Charleston one day.
It was breathtaking.

 A few days after Davis returned from camp, we headed down to Tennessee to spend time with my family.  We had a great time. I drove down with the kids midweek, and Kyle joined up with us on the weekend.  We went waterparking (I am officially making that a word!) and shopping. We ate at the kids favorite restaurants. My niece and nephew were there, so the kids had some great cousin time as well.

Tennesse Fair Grounds flee market

We managed to squeeze in two slumber parties this past week.  Kyle pulled our camper into the backyard. We stuck a TV out there, and the kids and their friends have been content swimming, watching movies and sleeping in the camper. 

cops and robbers

 

Today, Kyle found a couple of snakes. Kyle found the first one underneath Annakate's window. At first glance, we thought it was a Midwestern Rattler because of the markings and how it would shake its tail.  After I researched a bit online, I am now identifying it as a bullsnake.  The rubbermaid was no match for the snakes; they all managed to escape. No worries here though. We are not snake killers. We would have let them go if they hadn't managed to escape. 

Davis's voice is still hit and miss - mostly miss. His team will investigate further on Friday when we are down there for chemo. Since there is no fever, they have ruled out infections.  They will determine (possibly with the help of a specialist) if Davis's hoarse voice is being caused by allergies or chemo. Other than that, Davis is doing amazingly well. He still continues to lift weights, and the benefits are noticeable. He looks healthy and strong. He eats everything.  Let me write that again. He eats everything. A far cry from where we were a year and a half ago.  He has managed to stay healthy. I can't remember the last time he has had a fever, and it seems like it has been forever since we have had to take a trip to the ER. Well, God is good. We prove it over and over again. 

On Friday, we will head down to St. Louis again. Davis will have a check-up and receive his port chemo. It will be two years to the day of our first trip to Children's when Davis was admitted.  Quite a mix of emotions swirling around inside of me. I couldn't imagine that that day which I remember so vividly would have lead us to here.  Two years down, two years to go until end of treatment. What peace and serenity to know that we haven't made one step of this journey alone. Thank you.

God bless you this Independence Day and always.  Please keep praying for Davis's health and full recovery. 

We will keep you posted.