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.

Why Has It Been So Long Since I Have Last Posted?

6/13/2013:  11:56 PM

What has taken me forever?  We have been busy.  Finishing up school. Tae Kwon Do. Summer projects. Weight lifting. Planting season. Home repair. Life.

Let me back up to May. Usually my school work and Kyle's planting consume the month of May. It was my year to sponsor the junior class who held the prom, and of course, I attended the graduation ceremony and witnessed the ushering of another group of kids into the world of possibilities and responsibilities. Planting was hit and miss for much of May, which allowed us to enjoy some great family time.

Kyle's brother and his family moved to Wisconsin nearly 18 months ago. We finally cleared a weekend to head up and visit.  Davis and Annakate love spending time with their little cousins, and we sure miss seeing Kurt and Kristin. The weekend was too short for sure. We are looking forward to squeezing in another few days this summer to visit them as they have a new addition (a baby boy) to the family.

 

 

Davis played his last Jefferson band concert. It wasn't too long ago that Kyle and I played our last Jefferson band concerts. (Who am I kidding?  It was quite a long time ago actually.) The music was fantastic.  Davis loved the songs he played. He actually gave me the list and asked me to download the music to his ipod.  Band music on the ipod. Love it. 

 

It was his band teacher's, Mrs. Standfield, last Jefferson band concert as well.  There was a packed house, and several former students from years gone by came to play with the kids. It was beyond impressive, and I am pleased that Davis was able to share in that experience.

 

 

 

Davis took a field trip to Chicago to the Field Museum.  Honestly, he didn't tell me that much about it. Sometimes, as I am sure a lot of nearly teenage boys are, he is a young man of few words.  I said, "How was the trip?" He responded, "Good." That summed it up.

 



 

Nearly every Saturday morning in April and part of May was devoted to Annakate's soccer games. She loved it. She had some amazing coaches and a great team who really played well together. I don't think it hurt that they won nearly all of the games they played.  We parents braved the freezing cold temperatures in April and the blazing sun in May for three hours every Saturday morning. The kids were completely immune. She is pretty sad that the season is over.

 



 

May's chemo brought a spinal, port chemo, and a breathing treatment. It was all very routine.  Davis does such a great job with it all now. The doctors increased his oral chemo just a bit because he had gained a few pounds and his counts were still strong.

 



 

When Davis does the above breathing treatment, Pentamadine, to protect his lungs against fungal pneumonia, I have to wear a special mask as well.  The treatment, while beneficial to him, is harmful to me.  We have to use this one room because of the reverse air flow. 

 

Mother's Day. It was a fantastic day. The kids made me some wonderful gifts, including breakfast in bed. And I even took an afternoon nap. No complaints from me.

 

Davis earned a spot in the prestigious Jefferson talent show. He played "Can You Feel the Love Tonight" from The Lion King and "We're All in This Together" from High School Musical on the piano.  If you haven't been to a Jefferson talent show, you are missing out. It is a production. Mrs. Cornebise and her crew pours so much time and effort into the event.  Kudos to them for such an impressive array of talent crammed into two hours.  Annakate played in her Ashmore talent show. There were some great acts as well.  I am so proud of my kids for being able to get up in front of a gob of people and showcase their hard work and talent.

 



 

It seems that the end of school and a rain coincided. We were able to sneak away to Indianapolis for a night. We ate at a Pizza King. At Pizza King, the drinks are delivered on a moving train, and there is a TV in each booth. Two things the kids enjoyed. 

 

 



We stayed at the indoor water park.  Davis and Annakate took full advantage of the small crowd and the water slides. They must of climbed those steps to the slides at least a dozen times.

 

We have been working quite a bit around the house. It seems that all house work freezes for nine months while I am teaching. I am too preoccupied to focus on any real projects at home. I save them all for the summer.  Davis and Annakate have been a tremendous help to me the last couple of weeks. They pitch in and help out when I ask. With the help of my nieces, we were able to organize the basement.

 

Last week, we headed down to chemo at St. Louis Children's hospital. Davis' counts were amazing. His ANC (immune system) was over 3100 (healthy is over 1500), and all of his other counts (white blood cells, platelets, hemoglobin, etc) were all in the normal range. This hasn't happened since before diagnosis.  Even his liver function was in the realm of normal. This means that his bone marrow is strong and producing non-cancerous blood cells. So . . . . . All of Davis' chemo was increased. The doctors would like to keep his ANC around 1000. They want the chemo to keep retraining his bone marrow.  There is a constant fluctuation.  It sort of reminds me of those old scales that you are weighed on at the doctor's office. The nurse moves it one way, then back, then forward, until it is perfectly centered on your weight.  Well, that's how it is with Davis' chemo. Sometimes he gets too much, other times not enough. Still looking for the perfect balance.

 

 

Chemo was on June 7.  That is National Cancer Survivor Day, and it also happens to be National Donut Day. Davis celebrated National Cancer Survivor Day by enduring another round of chemo at the hospital, and he celebrated National Donut Day with a few donuts as well. I couldn't imagine a better combination. 



 

We managed to relax with a little fishing on Saturday. My mom and stepdad joined us. A little picnic lunch and some chicken livers for bait made for a pleasant afternoon. That is, until the mosquitoes didn't mind the scent of our bug spray. Well, after an hour, I had baited their hooks a dozen times, scratched a dozen new bug bites, and everyone had eaten their suppers. Earlier, I had forbid the kids from catching catfish because I am kind of a sissy when it comes from removing catfish from the lines. But it wasn't a problem; not a single fish was caught. No worries. We plan on fishing again soon.

 



 

On Sunday, Kyle and I dropped Davis off at Camp Rainbow. It is a camp for kids with cancer or/and blood-related diseases. The camp is funded through sponsors and donations and people who volunteer their time. It is being held is a state park near St. Louis. This is Davis's first time away from us. The camp seems amazing. There are nurses from Children's who volunteer their time. Many of the counselors (one counselor for every one to two kids) are former Camp Rainbow participants themselves. Davis's counselor is a 16-year-old from Colorado. The kids at camp do all sorts of things: swimming, singing, archery, camp fires, field trips, etc.

It took us until Monday night to realize that Davis didn't receive cell phone service at camp.  I was going crazy with worry since I had heard nothing from him in over 24 hours. I received a phone call on Tuesday night from a counselor on a land line at camp. She explained that Davis was homesick and just wanted to talk to me for a few minutes. I can't tell you how awesome it was to hear his voice -- despite it being quiet and sad. We visited for a few minutes, and I haven't talked to him since.

 I know this experience, being independent and being away from us, is needed on so many levels, but his absence this week has brought about mixed emotions. On one hand, the break from administering medications all of the time has been marvelous. Don't get me wrong; we don't mind giving Davis his medications, which require timers and timing and measuring, but not worrying about medications is a feeling I have forgotten. I keep reminding myself that in a couple of years, Davis will be off of medications, and this worry will cease to exist. The time has also been wonderful because Davis is doing what other kids his age do, and I can spend some one-on-one with Annakate. But on the other hand, I don't want to be apart from Davis. Knowing how close we were to losing him, I want to keep him close. I don't like the feeling of an empty house or the quietness from the lack of his voice or laugh. I don't even enjoy not seeing his shoes and toys scattered all over the house.  I love his presence here, because this is where he belongs.

Tomorrow, we will head back to St. Louis to pick him up. I am sure he will be full of stories to share. I can't wait. I am proud of him for conquering his week away from us, and I am sure he has built some friendships that will last long after camp has ended. 

Thank you so much for your continued support and prayers. We still continue to need them; I'm not sure we will ever stop needing them. We are so blessed; I don't know any other way to state it. May God bless you and keep His hand on you just as He has held us.

We will keep you posted.



Walk and Run For Wishes

4/20/2013:  8:27 PM

We participated in the Make-A-Wish's Walk and Run for Wishes today in Fairview Heights.  Davis was the honorary chair. It is a costumed walk and run, so there were all kinds of characters running around.  Although Kyle would disagree, I am thankful for the rain, because it kept him out of the fields and allowed him to spend the day with us. (Now it needs to dry up!)  Grandma and Grandpa Arnold rounded out our "Team Davis".

 

I just love this picture. Davis was obviously Batman.

 



 

Annakate took advantage of the face painting station and was transformed into Hello Kitty.  There was also a guy there making some pretty impressive balloon creations.  Oh, and Davis was in his element when the Star Wars 501st Legion showed up.

 



 

Adam, the event coordinator, and Mike Montgomery, DJ for WBGZ radio, buddied up with Davis, and made for an impressive trio.  After welcomes and thank you's were said, Davis gave a little speech.  I was so proud of him.  He told everyone what his diagnosis was, what his wish was, all the different things he did on his Wish trip, and he thanked Make-A-Wish. 

 

Davis was also the judge for the costume contest.  It was very hard for him to choose, but he managed to pick his favorites from the line-up.

 

 

After some quick stretches, everyone geared up for the walk or run. Davis counted off with the traditional, "On your marks, get set, go" and the runners were off,  and then he led the walkers out. He and Annakate quickly gained ground from the rest of the pack of walkers. I would see them briefly on a distant trail, and at one point, Annakate yelled, "Hey Mom!" and then they were gone again.  They had a blast! 



 

 

 

By the time I made it back to the pavilion, Davis was getting a back massage from Dr. Rice, an area chiropractor.  A super nice guy. 

 

The festivities concluded with a raffle.  Davis was the ticket announcer.  There were all sorts of prizes. A lady who had bought several tickets had to leave before the raffle started, so she gave all of her tickets to Davis. He was ecstatic! Amazingly enough - and no, it wasn't rigged - Davis pulled his number and won a birthday party for 20 kids to the Great Godfrey Corn Maze. Davis was talking about possibly donating the party to the Hem-Onc Life Specialists at Children's because it is a bit unrealistic to take 20 kids to a corn maze two and a half hours away from home. But he hasn't decided anything yet.  He was just tickled to win.

 A special thanks for all of the supporters of Make-A-Wish. I think there were fifteen or so different teams represented today, and I am sure that most of those teams represent someone - a child - who has been affected by cancer or other life-threatening disease. We are looking forward to next year's Walk/Run for Wishes.

 

 

Today, there was a moment of silence taken for those we have lost this year due to cancer/illness. I couldn't help but use my moment of silence to pray for Cory's family. I have felt so burdened for them lately. Could you please lift them up in prayer if you get a chance?  And as always, thank you a million times over for inquiring about and praying diligently for Davis and my family. God continues to keep His hand on him and bless us everyday.

 

We will keep you posted. 

Another chemo down . . . a gob more to go

4/13/2013:  4:00 PM

Well, Easter weekend was a bust.  Davis fell ill on Good Friday. I took him to the pediatrician; she said he had a cold and that he needed to ride it out. Davis ended up spiking a fever (a high one - 103 degrees) on Saturday before Easter. Kyle took him to the ER as is protocol.  Luckily, his ANC (immune system), which had been super low the week before, had spiked as well, and he didn't need to be transferred to SLCH.  The ER doc gave him a round of port antibiotics to protect his port from infection and home they were bound.  Davis continued to feel crummy and have a low grade fever through Monday morning.

Since Davis was sick, he was unable to go to church. This was the only Easter picture I have for this year.

Davis's chemo resumed last week.  His counts were up, and chemo was restarted. His labs this week revealed extremely high counts - the highest they have been since diagnosis.  His counts were all nearly in the healthy range.  I was super excited.  At chemo yesterday, the doctor revealed that his chemo will be increased to match his weight and to lower his good counts.  Having good counts, while a good thing, is also a negative at this point.  The doctors are still training his bone marrow to produce healthy t-cells.  The chemo is needed to suppress the counts while the bone marrow is being trained. . . .if that makes any sense.

 

 

Davis continues to get the breathing treatments needed to protect his lungs from infections.  He has learned to tolerate them better, which has cut down on the actual treatment time.  We no longer have to stop every five minutes.

 

Davis and a few of his friends sold bracelets at his school to raise money to donate to a good cause.  He was able to deliver that money on Friday.  The money was donated to the Life Specialists Dept. at Children's.  My school district, Oakland High and Lake Crest School, did a hat drive in the fall to benefit children fighting cancer.  We were fortunate to deliver the donations.  All of the hats will go to the children cancer patients at SLCH.  Davis couldn't resist keeping one for himself. 






 Since Davis's chemo and breathing treatment aren't time consuming, we could make it out of the hospital within a couple of hours. However, the pharmacy always takes quite a while to get our prescriptions ready.  We took advantage of the long wait and ran down the road to the Cheesecake Factory.  Quite a perk for a chemo day.

I might have mentioned it earlier, but Davis has gained over thirty pounds in the last year.  He has been working with a trainer for a couple of months on building some muscle, and it has really made a difference.  I can't help to think about where we were a year ago and how much slow change can happen in a little bit of time.  

 The picture above was taken one years and two weeks ago. The picture on the right was taken on Friday. What a difference a year and a whole lot of prayer makes. I saw a man mowing the lawn at Barnes on Friday.  I remember that the day we first went to Children's, July 5, 2011, I saw a man mowing the same lawn.  I remember thinking How can that guy mow a lawn?  Seriously? My baby might have cancer. How can he just mow a lawn? I know it sounds crazy, but at the time, I was just so hurt as to how the world could just go on and my world appeared to be crumbling.  Everything seemed so new, terrifying, uncertain. And he was surrounded with the mundane. So when I saw the guy mowing on Friday, I couldn't help to be connected to the scene in some way. Luckily, the emotions that were tied to that first experience are no longer there.  We have faced the giant. But I was overcome with a bit of tired sadness as I realized we have weathered seven seasons of the same drive, the same view.  I'm not complaining though. We are blessed beyond measure and if I had to live this every week for the rest of my life, I would.

It seems our calendar is filling: field trips, Taekwando, piano, lifting, soccer.  It's good to be busy.  Annakate loves playing soccer.  She has an amazing little team and some outstanding coaches. 

We are very ready for summer.  Kyle is itching to get in the fields.  The weather keeps teasing us.  The trees are starting to bud.  Next week, we will head to the Make-A-Wish Walk for Wishes Run/Walk.  Davis is this year's Grand Marshal and will be briefly speaking to all of the racers/walkers. I know he will do a great job.  We love to be able to pay forward all of the kindness that has been shown to us.  They put his video on their homepage.  It's pretty awesome to see it there.

Here, check it out:  Walk for Wishes

I can't help to think at times that Romans 5:3-4 were included in the Bible for my family as I often reflect on it. "Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance;  perseverance, character; and character, hope." I am sure all families touched by cancer feel the same. 

Thanks for your continued prayer and support.  I couldn't imagine where we would be without it. 

We will keep you posted.  

Snowman For a Day

 3/26/2013:  11:00 PM

Let me catch up.

Well, at the beginning of the month, I had the opportunity to do a polar plunge with some of my students.  The outside temperature was 27 degrees and the water was 41 degrees.  Super cold! But it was for a wonderful cause, the Special Olympics of Illinois, and I enjoyed the new experience.  It's is all part of my new motto to be a human do-er instead of a human being.

 

 

Annakate has been doing quite well in Taekwondo.  She has finally earned her blue belt.  She has just a few more belts to go before she is a black belt.  We are very proud of her. 

 

 

 

Typically, she would be in her uniform for the belt ceremony, but we had to miss the belt ceremony for a church revival.  I think she looks adorable in her dress clothes and belt.

 

Our church Easter drama has consumed most of Kyle's and the kids' time as of late.  After many long nights of practice, the performances came and went. It was amazing. My kids loved every minute of it. Davis had the opportunity to be the 12-year-old Jesus in the temple, an honor that made him very proud.  Seeing my children use their acting skills and work together with their church family for the blessings of others brought tears to my eyes.  

With the long nights of Easter drama catching up to us on Sunday, it was such a gift to be snowed in on Monday. The kids slept in and played at their grandma's (I guess we weren't snowed in for too long.). Davis even built a snowman. The snow was perfect for it.

 

Since cold weather is my nemesis, I watched through the window.  I couldn't help but giggle every now and again at the sight.  When Davis was patting and shaping one side of the snowman, the dogs would be eating big chunks of snow from the other side. I noticed later that one of the dogs had marked the snowman as his territory.  

 

I am glad the fun was in the making, because there isn't much to show of that lopsided and stained snowman today. 

 

Davis has had his chemo held for the last two weeks.  Two weeks ago, a blood test revealed low platelets.  They weren't super low (under 10) but they weren't over the safety net of 50 to continue oral chemo, so it was postponed.  I know many people have asked why he isn't transfused when he is low so he can continue with his chemo. Well, it would make sense to do that, but the doctors want his bone marrow to do the work on its own as much as it can. The transfusions are there as a safety net, but anytime Davis can make good blood cells on his own, he needs to. So two weeks and no chemo.  He will have another blood test on Thursday to determine if we can resume with the chemo.  Hopefully, we can.  The little breaks from chemo sure are nice every once in awhile. 

 

I don't know if I mentioned it in the last post, but Kyle asked when Davis is scheduled to be done with the maintenance phase (done with daily chemo). We have a tentative date:  April 2015.  April 2015!  Wow. That seems like forever away. I am not complaining. Chemo doesn't affect our lives the way it used to, and I know that there are other children out there who have to take medications/treatments for the rest of their lives. It just seems like a long time; that's all. But perseverance is the name of the game, and we've got this.  

 

Thank you for your continued support. I love how so many people are truly interested in the well-being of Davis and ask about him often. I am so touched when I learn of those who still call out his name in prayer.  I thank you a thousand times over for it. 

 

We will keep you posted.