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. 



Make-A-Wish Newspaper Article

3/11/13:  6:53 PM

We have enjoyed the last couple of weeks.  The routine we had before cancer has resumed.  Work, school, chores, church, Taekwondo, weight lifting. . . Every minute of it wonderfully perfect in its own sort of way.

The kids have made it to their spring break. Annakate started hers with strep throat. Poor little girl. Her timing is impeccable.  This seems to always happen.  I can't help but think of a time a couple of Christmases ago when she had the stomach flu on Christmas Eve. For spring break, Kyle had made plans to take the kids away for a couple of days, but as of now, that has been postponed. A few unhappy campers moping around here.

Davis made the paper!  The Times-Courier ran a story over our Make-A-Wish trip after being contacted by Make-A-Wish.  It was a lot of fun. It didn't take long for Davis to warm up to Mr. Fopay, and the article turned out splendidly.

If you missed it, just click on the link. 

Family takes trip to Hawaii thanks to Make-A-Wish

We will head back down to St. Louis this Friday. It should be an easy day of chemo. Just a little push through the port and a breathing treatment.

We thank you for every thought and prayer that has been lifted up on our behalf.  It is only by His grace that Davis is doing so well.  Please keep them coming. 

We will keep you posted.

February Chemo - Two Trips

2/24/2013:  10:17 PM

Oh my goodness! Where is the time going?  It seems that we are caught up in the routine of life now more than ever before. Let's catch up . . .

Annakate is finally healthy again. It seemed like she was sick forever. 

On Valentine's Day, I took Davis down to St. Louis for his monthly port chemotherapy and a lumbar puncture/spinal of Methotrexate (every three months). He had a bit of a cough and a runny nose, so I wasn't surprised when his oxygen level tested below normal. The doctor checked his lungs, and they appeared clear. I explained that he had been experiencing some arm and leg pain and headaches, which we had contributed to his new exercise system and his apparent cold.  It was then decided that he needed a blood-ox test (a test used to test the amount of oxygen being carried in his red blood cells). The test revealed that he had elevated methemoglobin in his blood.  It is my understanding that methemoglobin is carried in the hemoglobin and does not released oxygen properly into the bloodstream.  Due to his methemoglobinemia (quite a fascinating word) and his cold symptoms, his spinal was cancelled. The anesthesiologists wouldn't sedate him. The medication he takes to prevent lung infections, Dapsone, was the cause of his anemia, so he was taken off of it. He has now been switched back to the Pentamadine breathing treatments to ward off lung infections.

 

 

Davis's cold got the better of him by Saturday, and he spiked a fever.  We ended up in the local ER.  The SBLHC ER takes such great care of us when we are there.  Many of the doctors have children Davis and Annakate's ages, and they are so personable.  Anyway, the doc ordered a CBC and blood cultures to be drawn through Davis's port. The results came back, and no port infection seemed to be evident. Since his ANC was so high, he was given a bag of antiobiotics through his port, and we were sent home. Pretty routine. By Sunday evening, he was feeling much better.

 



 

 

Kyle and Davis headed down to St. Louis on Thursday to beat the storm. Davis had to be at his clinic appointment early in the morning on Friday. The nurse in clinic tested his blood-ox level again, and since it was on the high side of normal, his lumbar puncture was a go. The APC (Ambulatory Procedure Center) was able to work Davis in early, so they work back on the road in no time.

Davis's chemotherapy was increased because his counts have remained consistently high. The doctors wish for his ANC (immune system) to hover around 1000 (healthy kids run 1500 or above), and his tested over 4000 for this month. Although I don't want anything interfering with his treatment plan, I am grateful for the high counts during the flu season.

Kyle spoke to Davis's oncologist about switching over to pills for all of Davis's medication. Currently, with the exception of one medication, all of his meds are liquids or liquid compounds. Some are refrigerated.  A year ago, I couldn't even fathom pills as an option for treatment because, if you remember, Davis could/would not swallow pills.  Goodness, there has been so much change over a year. I am tickled that he can swallow pills now. 

Another notable . . . February 27, 2012 will mark the one-year anniversary of Davis's last hospital stay.  Can you believe it?  When you spend so much time at a place - a second home of sorts - it is hard to imagine anything beyond it, especially in cancer land when life is focused on the day to day. Davis reminded me a couple of weeks ago about the so-called anniversary.  He actually said that he missed the hospital.  I am sure if he was there, he wouldn't.  But I do understand what he means. Everything was certain in the hospital. . . the time for medicine . . .the meals . . . the security of knowing you were being carefully looked after. . . the rotation of the nurses . . . the activities . . .the other children. But with all that certainty, I am more content with being at home.

Davis has started working with a trainer to build some muscle and endurance. He lost so much muscle mass last year. He struggles to have the stamina that other sixth grade boys have. He was ecstatic about starting, but that enthusiasm has wained a bit. Working out is hard work. I am sure he will be thankful for his effort in the long run. 

We continue to keep on keeping.  We never forget how truly blessed we are.  I am amazed at how healthy Davis has remained despite the treatments and sickness that has run amok. I pray over him every night that God keeps a hand of protection on him, and God continues to deliver. Thank you to all of you who pray for our family. It means so much to us. 

We will keep you posted.

One Rough Week for One Little Girl

1/30/13: 11:00 PM

Poor Annakate. She can't seem to catch much of a break as of late. A couple of weekends ago, she started complaining about her ear. By Monday (Martin Luther King Jr Day), it had nearly swollen shut. A trip to the doctor concluded that she had a very nasty ear infection. So the antibiotics began. Probably not the way she wished to spend her day off from school.

Tuesday . . . still sick.

Wednesday . . . better. The antibiotics were starting to work, and she was feeling like her old self again.  She went to school. She had her teeth cleaned. She went to church. It was there while playing a game (actually racing to a seat) in class that she tripped over another child's foot and faceplanted into a wooden arm rest on a couch. Off to the ER we went.

 

My poor little thing bit through her lip and lacerated the inside of her right cheek. Dr. Stout was kind enough to stitch her up and send her home with a pretty numb lip. I'm not going to lie, it was sort of nice to be in the ER for the things that you are supposed to be in the ER for. It was the type of trip I had always imagined parents everywhere making.  One of those trips due to the accidents of childhood. Don't get me wrong, I don't want my children to have to make ER visits, but if they do, I want it to be for reasons like this not because of bacterial infections or blood infections often associated with cancer.

Thursday was rough.

 

Friday was rough. Finally, I took Annakate back to the doctor. We were due for a follow-up anyway. Annakate hadn't consumed any food or water (except for a couple of ounces) for a day and a half. She refused to take her antibiotic or Tylenol. She wouldn't drink through a straw because she wouldn't close her lips around it. She was super miserable. The nurse gave her a stern talk about the importance of drinking and the concerns of dehydration. The doctor put her on a different antibiotic that she only had to take once a day and for only a few days, and he also gave her some mouth-numbing mouth wash.

Saturday was rough.

Sunday was better. She woke up feeling pretty great. She managed to eat and eat and drink. She went to church. She was on the up and up.

Due to the severe storm and power outage in Ashmore, Annakate didn't have school today. Well, what would you know?  She woke up with a fever and a sore throat. I gave her a couple of Tylenol, and the fever did subside and she resumed normal activity, but my goodness . . . .Really? 

Just pray with us that she gets better and stays better. I am hoping that we can put the last couple of weeks behind us.

Davis has been doing great. He has been complaining a bit of leg pain, and I know that worries him. He has also been sweating a lot a night, and I think that worries him too.  I think he just uses way too many covers. He asked me tonight when I was tucking him in, "Mom, do you think I am relapsing?"  I reassured him that he isn't. I told him that we don't see enough of the signs. I told him he could talk to the doctor about it in a couple of weeks at his next appointment. She can check him out. I think that the fear of relapse will always weigh on his mind to some degree. He is a thinker and a worrier, and I think it is hard for him just to put his total trust in God. He's human, and he's eleven. And he has had to grow up and carry the burdens that most adults struggle to do gracefully. I can't even imagine the weight that all of this places on him. 

I am so thankful that God has had His hand on Davis. So far, he has managed to be fever-free for months now. With all of the sickness around and even in our own home at times, I am amazed that Davis remains so healthy. I don't doubt that it is a God thing.

Please pray for both my babies. Annakate for her health, and Davis for peace of mind. I know he is worried about relapse. I think he thinks that being this healthy for so long is too good to be true. It seems like he is holding his breath or waiting for the other shoe to drop or something. Davis has also been very grouchy and combative lately.  He hasn't been getting adequate sleep, which contributes to his bad attitude, but he's old enough to exert self-control. I definitely pray for an end to this sour attitude.

We hope this finds you and your family happy and healthy. May God richly bless you always.

We will keep you posted.

Playing Catch-Up

1.20.13:  7:00 PM

I promised Hawaii stories. . . Hawaii was beautiful.  Davis's wish was to go to Pearl Harbor. It was wonderful. The history was amazing. There was much better explained through the museums than any textbook I have read. Davis was treated like royalty. He was able to pick out any souvenir that he wanted from the store. Herb, a World War II veteran, was our tour guide. We received front row treatment in the theater, and we were the first to get on and off the water shuttle to the Arizona Memorial. There was such a peaceful reverence on the memorial. Terribly saddening.

 

 

After spending quite a bit of time going through the museums, we toured the Arizona Memorial, we toured the USS Missouri,the retired battleship.  Davis had seen the movie Battleship and thought it would be cool to tour it. Personally, I didn't find the ship all that interesting, but the history was amazing. The Missouri (The Mighty Mo) was the ship that Japan surrendered on in World War II.

 

We snorkeled. Well, I snorkeled. The weather was a bit ominous. It was raining on and off and the gusty winds made the water incredibly choppy. Kyle, who gets major motion sickness, decided it was best if he stay on land. So Davis, Annakate, and I headed out to sea. The first stop was to view the green sea turtles. Davis did a great job. He kept his head under for so long looking around and taking pictures that I kept tapping him on the shoulder in an effort to keep him with the group. We were called in after twenty minutes or so. I couldn't understand why were were being rushed, and then the guide, Steve, explained. There were Alaskan Humpback whales nearby. It is the accepted Hawaiian water policy that people are out of the water when whales are nearby. Our catamaran ran parallel to the two giants for some time. One turned south and swam right under our boat!  The water was a little over 40 feet deep, so the whale was incredibly visible. It was definitely a highlight of the snorkeling trip!  We eventually returned to snorkeling. Well, I returned to snorkeling. Davis was too cold to get back in the water despite the wetsuit, and Annakate couldn't find the courage to get into the water. She is afraid of fish - even afraid to look at fish. She remained on the boat with Steve. 

 

 

We swam with dolphins one day. It was pretty neat. The interaction was limited, but it was still quite an experience. We even swam with a walphin. It is a half-killer whale, half-dolphin creature.

 

 

On our days when there was not a tour scheduled, we found plenty to do. We climbed to the top of Diamond Head, a volcanic cone. Boy was it a hike!  Kyle and Davis sprinted ahead, and Annakate, Marylee (Kyle's mom) and I stayed together. We eventually reached this 100-step steep staircase. Marylee waited at the bottom and Annakate yelled to me from twenty steps in, "Come on, Mom!" I had no choice but to follow her. Oh my goodness, talk about a burn. Those 100 steps were about 40 too many. But the hike was worth the work. The view was amazing.

We did a lot of other wonderful things too. We went to a luau. We meandered through markets. We ate and ate. I think we ate ice cream every single day. We managed to spend every day that we didn't have something planned at Waikiki beach. It was amazing. Davis and Annakate are such beach babies. They find all kinds of things to do: build sand castles, collect rocks, look for shark teeth, paddle board, tube, swim, jump waves, etc.

 

 

 

I can't thank Make-A-Wish enough. We made such fantastic memories on this trip. His ANC (immune system) was over 4000!  The doctors are wanting him to hover around 1000.  All of his other counts looked good. The reason why his ANC is so high is because a couple of months ago, his team reduced his chemo by half. He had spent several weeks with an ANC below 500 making him neutropenic. He even had transfusions in October. The culprit, they believed, was that the chemo had built up in his system and his body couldn't keep up. Now that his body has made a count recovery, they will slowly start increasing his chemo meds one at a time.

His check-up went well. He continues to keep on keeping on.  He even managed to have a slumber party after his chemo on Friday. He just loves spending time with his friends. They are quite a hoot when they are all together.

We are back into a routine and busy as usual. Absolutely no complaints. We have been being very cautious with germs. The flu is rampant. Annakate fell ill this weekend. I am not sure if it is cold or flu, but it appears to be more cold-like than flu-like (no aching). Nevertheless, she has been quarantined to our bedroom and bathroom allowing Davis free reign of the rest of the house. This has been our procedure for the last year and a half.  If the illness gets serious (stomach flu, shingles, etc), we send Davis to Grandma and Grandpa's, but a cold keeps him at home with us. Kyle usually tends to the healthy child and I usually tend to the sick child. Some may see that as unfair, but I don't think so. If my babies are sick, I want to be there with them. Besides, since I work with children every day, I figure I have the stronger immune system.  I am glad we have a system that works. 

We aren't due to head back to Children's for another month. I thank God every day for the hand of protection he puts on my children. And even though the ringing of the bell is so far away, there is much comfort in the progress we have made. Please continue to pray for Davis's complete recovery and healing. I don't ever want to indulge in a false sense of security just because he looks well, and I don't want to ever forget about how difficult the journey has been. We cannot appreciate how far we have come or how much God has blessed us if we forget.

We will keep you posted.

Aloha, Hawaii. . .Mahalo Make-A-Wish

 

1.10.2013:  5:00 PM

Happy New Year!! 

We spent the first seven days of this year in Hawaii on Davis's Make-A-Wish wish. It was amazing. I have so much to share.

But I am going to have to fill you in later. After nearly ten hours in an airplane, two hours in a car, unpacking, multiple loads of laundry, and two work days of catch-up and teaching under my belt, I am spent.

I just really wanted to thank Lauren and the Illinois chapter of Make-A-Wish for making this trip possible. We understand the importance of family more than ever, and thank you so much for providing this opportunity to enjoy one another.

I made a "thank you" movie for Lauren, our Make-A-Wish coordinator. I thought I would share it. Stories to come, I promise.

 

 

I had to upload it from Youtube because it wouldn't download direct for some reason. Apologize for the junk that comes up at the end of the video.

Seriously, happy new year! Hug your loved ones - especially your children - a little tighter this year, and tell them that you love them every chance you get.

We will keep you posted.