Loving that Life Keeps Happening

5/2/2012: 11:13 PM

We had a very pleasant weekend full of family activities. We quasi-camped on Friday night. Basically, we watched a movie and slept in the camper at the farm. The kids still thought it was fun.

Davis in his bunk

Annakate in her bunk

Saturday was a much anticipated day. Annakate competed in her first taekwondo competition. I did my best to disguise the fact that I was a nervous wreck for her sake, but I am pretty transparent. No fear though, she did an amazing job. She took second in her one steps (Yeah, I am not really sure what those are. In my non-taekwondo mind, I equate them to a very abbreviated dance routine.) and claimed first in her form (This is a more lengthy routine.). We couldn't be more proud of her. She really enjoys taekwondo, and I am glad to see her excel in it.

Annakate performing her form for the judges.

There was a tie, so there was a tie breaker re-do. Here the judges are
voting for the first place title. Yay Annakate!

Annakate, her trophies, and her instructor Mr. Snyder

Davis has been attending school on a regular basis, and we have noticed that he has been taking his medication quickly and without complaint for the last couple of weeks. He seems so absorbed in his fifth grade world. He is excited about his upcoming band concert and has hummed every single song to me as a preview of the real thing. He is participating in Miss. Goodchild's (his reading and English teacher) book club, and often we have to force him to shut off the book light and go to bed, because he can't seem to put his book down.

I love that life keeps happening. At times, life feels more like the "old normal" than the "new normal". I couldn't even imagine this two or three months ago. I was updating the calendar this morning and it hit me. I was planning - planning days, weeks, months ahead of time. I can't really explain it, but when Davis was diagnosed, the calendar was wiped clean. And for the seven months that followed diagnosis, the only permanent plans that were made were doctors' appointments and transfusions and spinal taps and blood draws. Cancer dictated everything in our lives. And although we knew we were working towards an end goal and many assured us things would get better, the idea was too abstract. All of our energy was devoted to living in the now and to facing the immediate. So to see the calendar covered in ball games and orthodontist appointments and vacations was beautiful to me.

We thought our kitty, Jerry, had broken his leg. He was limping pretty
badly on Tuesday. A trip to the vet revealed some major tenderness in his elbow
and an abscess in his forearm. Thank goodness, nothing major for this old barn cat.
Annakate and Davis take turns giving him his antiobiotics and pain medication.

Davis seems to be working on his behavior. We have noticed fewer disagreements at home. Kyle and I have made a big effort to make sure that Davis gets a consistent amount of sleep. We think that his lack of sleep as the week wears on has a considerable impact on his behavior and emotions. Kyle has also started prepping Davis as to the behavior we expect before Davis has a chance to be difficult. For example, Davis didn't feel well this afternoon. He had a baseball game early evening and then we had church. Despite leaving a little early from church, Davis didn't make it to bed (shower, reading, supper, etc) until nearly 9:30 PM. Kyle reminded Davis several times throughout the evening that he is expected to get up in a pleasant mood and eat a good breakfast in the morning. Hopefully, by placing the expectations out there and giving Davis time to adjust and accept them, we will thwart any misbehavior. I know that it seems elementary and unnecessary at best for most ten-year-olds, but Davis isn't most ten-year-olds. We have to re-program him for living a life where cancer and its side effects aren't center stage any more.

Holding at second base.

I know I convey it all of the time, but we are truly thankful for your prayers and support. You have been so faithful in standing by our sides. We ask that you still continue to lift up positive thoughts and prayers on Davis' behalf. I don't want to develop a false sense of security just because Davis is looking better and feeling better. There are still the risks for relapse, port infections, and serious illness (such as pneumonia).  We still pray against the short term (hypoglycemia, mouth sores, nerve pain) and long term (secondary cancers, organ damage) side effects. I refuse to let fear rule me, but I would be lying if I didn't admit that I carry a much larger load of fear and worry than I ever have in my life, and I think I always will.

An update on Cory. Thanks to all who have been thinking and praying for Davis' friend. I am so moved to hear how many of you have taken on praying for Cory like you have been praying for Davis. It worked. Cory, who was so homesick, was able to go home with an ANC of 0 (not something very common on the west wing of the 9th floor at Children's). He has a series of tests on Friday. I am sure that the family would love, love, love prayers and positive thoughts going out on that day.

We will keep you posted.

I've Been Missing Home

4/29/2012: 11:15 AM

While Davis was in the hospital at the beginning of March, he composed a song with a wonderful music therapist, Tracy. I have finally figured the only way to get the song on the blog was to make a video. I used the pictures I took while he was in the hospital for the near two weeks. Davis had a great deal of fun creating this song. With Tracy's help, he wrote the lyrics and composed the music using computer programs designed to feed together the instruments, tempos, and key changes that Davis imposed. It was quite a treat for him.

Inconvenienced by Cancer

4/26/2012:  10:20 AM


I am sorry that I haven't updated sooner. My internet has been out for the last several days.
Last week was rough. Despite no real hiccups in his treatment, Davis' behavioral/emotional issues dominated our every day life. I was/am seriously at my breaking point with his mood swings and back talk. I am sure that some of it is normal kid stuff, but Davis was never a child to misbehave in any sort of way (Annakate is a bit of a different story.), so I am adjusting to new circumstances and experiences as a parent.  Kyle believes that since Davis and I have extremely similar personalities and neither of us have any give, the emotions run high. Kyle has done a good job this week of being the communicative liaison, and things have been improving slowly.

Now that treatment has slowed a bit, I can better understand the emotional toll that cancer has taken on Davis. He is starting to feel better, but he is irritable at the inconveniences cancer is causing him. He has taken to wearing his port protector underneath his baseball t-shirt so it isn't as noticeable. You can't even tell he is wearing it really; he looks bulky as though he has been lifting weights. I said to him last night, "Hey, have you been working out?" The problem with the port protector is that he can't run with his arms to his sides. He has to run with his elbows and arms out, which slows him down considerably. I know that he says he doesn't mind boating with us this summer, but I am sure he isn't going to enjoy it as he should. He can't get into the water for risk of a port infection, and he can't be exposed to the sun for long stretches because of the skin sensitivity caused by cancer. These are just a couple of examples from a long list. Bottom line: boy and cancer don't mix. We aren't complaining, truly. I know how blessed we are, and Davis doing all that he is doing is miraculous on many different levels, but I think as a family, knowing how well he is feeling physically, we want cancer behind us.


Speaking of emotional toll . . . Davis, my nephew Shane, and I were eating in Buffalo Wild Wings on Sunday. A boy a little older than Davis was being seated and walked by our table. The boy undoubtedly noticed Davis' hair or lack of and his mask and made a great effort to turn around, stop right in front of Davis, and give the "what's wrong with you, you freak?" look to Davis. He then just turned around and walked away. As he did, Davis looked at the back of his head and said, "What?" and then put his hand in the crook of his elbow on the table and cried. At first, I thought he and Davis knew each other and they were going to talk, but once I realized what was going on, I was stuck in the aftermath. Even though I know that child was completely ignorant and possibly unknowingly rude, I wanted to unload a great deal of hostility on him and his grandmother. As a mom, I wish I could do a better job to shelter my child from the endless stares and whispers. There is so much that cancer has taken from Davis already; I just want to preserve his privacy and pride, and I can't. Anyway, I chose the moral high road and explained to Davis that sadly there are people like that in the world. I told him, "His problems are bigger than yours, and you reap what you sew." Davis soon regained his composure, but that memory has been seared into my mind. I was able to see how fragile Davis' emotions are, and how helpless I am at times. I am not sure if this encounter affected us because we are exhausted and drained from facing and fighting all of the layers of cancer or if it is because we live in a community, we attend a church, and Davis attends a school where he is loved and accepted and not treated differently, because sometimes we forget that he is a child with cancer. Maybe it's both.


Annakate was sick over the weekend. Kyle and I took her to the ER on Saturday evening. Yep, strep throat. Davis went to stay with my in-laws because the ER nurse practitioner recommended 48 hours of distance. Annakate was feeling much better by Monday morning. Kyle watched Annakate on Sunday morning while Davis and I attended church. When we made it home, Annakate had a surprise for me. Two new fish! Yippee! (That is my sarcasm in case you couldn't read it.) You see, this is what happens when daddy and daughter spend sick time together. :) Needless to say, the guppy Lein (pronounced lee - in) (a Japanese guppy, perhaps?) and the algae eater Jolly are nice additions to our family.

Friday night . . . fever

Saturday night . . . ER

Kyle took Davis to church Sunday evening and I stayed home with Annakate. Kyle and Davis went to Wal-Mart. Well, Davis was doing some kind of karate sword-fighting moves on Kyle, Kyle dodged an attack from Davis, Davis ended with his foot in some kind of crate. . . . Alright, Davis injured his ankle. You see, this is what happens when daddy and son spend unsupervised Wal-Mart time together. :) Tuesday, I had to take Davis to get an x-ray to make sure nothing was broken.  Good news! Just a sprain.

Davis and Dr. Leifheit

Things are picking up around here. Annakate keeps busy with soccer and Taekwondo, and Davis had his first baseball game last night. At times, I thought we would never get to this hustle and bustle again, and here we are. It is a welcomed change of pace, but we are still adjusting to it.

Annakate doing what soccer players do . . . running and kicking.

Davis guarding third.

We want to thank the anonymous saint (maybe from the Rantoul area) for the card of encouragement and the gift. The kids were overjoyed, and Kyle and I were equally grateful. The kids had a blast using their sleuthing skills to try to decipher the handwriting on the card and any overlooked clues. No such luck. God bless you!

Thanks to everyone for standing beside us as we continue on this journey. We ask that you pray not only for Davis' health (no relapses, no long term side effects, no secondary cancers, no organ damage) but for his emotional well-being as well. Carrying the stress of cancer as a ten-year-old is not an easy feat, and I sadly fear that cancer will leave scars that we cannot see. We have only been able to do so well for so long because of the prayers, positive thoughts, and encouragement that have been sent our way. The weight of our burden seems far lighter because so many of you have shared in the load.

Please earnestly pray for Davis' friend Cory. He continues to receive treatment and waits for counts to build in the hospital at Children's. He wants nothing more than to be healed and to go home.

We will keep you posted.

Rough Week, Best Friday

4/13/2012: 11:00 PM

We found out on Thursday that Davis counts look great. His ANC (immune system) is over 1800 (Healthy kids run over 1500)! All of his other counts are better than they have been in a long time.  The phone call from clinic also brought some better news. Davis was not scheduled to get a lumbar puncture (spinal tap) as originally planned. Apparently, the LP on the roadmap is for low-risk ALL patients. Davis is high-risk ALL and received cranial radiation, which exempts him from this LP. Davis was more than thrilled to hear this news.

Doesn't he look good? He gained four more pounds. He
now weighs 66.7 pounds. Hard to believe that he was
nearly fifteen pounds lighter a couple of months ago.

So chemo today was fairly easy. Davis was accessed, given a chemo push of Vincristine, and de-accessed. The whole chemo process took less than five minutes. He did receive a new treatment as well. He opted to try a breathing treatment of a mixture of Albuteral and Pentamidine to protect his lungs from bacterial infections and pneumonia. He has been taking Septra, an antibiotic, twice daily three times a week. Since he still fights, stalls, or drags out medication time, we thought the breathing treatment might be a better option. Plus, the Septra can lower Davis' counts, whereas the Pentamidine does not. The drawbacks? The breathing treatment has to be done in one specific room that has special ventelation, and the Pentamidine smells and tastes horrific. Davis had his mask scented and he sucked on a ring pop to help diffuse the taste and smell. He had to stop the treatment a couple of times to blow his nose and wipe away the drool caused by the ring pop. The nurse, my mother-in-law, and I had to wear heavy masks to protect us from the Pentamidine, which was too potent for us to breath. After thirty minutes, the treatment was over, and Davis concluded that the Septra wasn't so bad after all. I hope a month of Septra-free living changes his mind. Thirty minutes of torture seems a better deal than swallowing down a chalky, crushed antibiotic twenty-four times a month, but the decision will be his to make.

Albuteral treatment

Pentamidine treatment

We finished in clinic around 1:00 PM and headed down to the cafeteria. To our surprise, the St. Louis Children's Choir (3rd through 6th graders) were singing. Oh, did Davis love this! He downed his hot dog and listened to the kids sing.

We had waited around at the hospital because Cory was selling ice cream at 1:30 PM in the abandoned nurses' station on 9th floor. Cory, his dad, and the life specialist, had created some cleverly named ice cream concoctions and were dishing them out for fifty cents a serving. You can't beat that! Cory's ice cream stand was a smashing success. Nearly all of the doctors and nurses showed up, and a handful of patients and parents did as well. Cory has an unbelievably tender heart. When asked, he said he was going to donate half of his earnings to Child Life and the other half to research.

Davis and Cory
The best part of our Friday.

Please continue to pray for Cory and his family. My heart aches for them. I can't say that our journeys are even comparable any more, but I feel a protective attachment to the 9th floor children and the families that have crossed our paths. We lift Cory up in prayer each and every day simply because he needs it. God can heal him, and we provide the faith.

Please remember Davis in prayer and positive thoughts as well. He has been struggling with some behavioral issues as of late. Despite the help of a psychologist and some low-grade medication, he still fights for control at home (common in children with cancer). While his behavior (talking back, not doing chores, etc) might be tolerated in some homes, it isn't in ours, which has lead to quite a bit of stress lately. My prayer is that this behavior subsides. I hope that as his life resembles his old "normal" life so will his personality and behavior. Honestly, I think dealing with the cancer is much easier than dealing with the behavioral issues that accompany it.

Well, we are finally in the thick of the maintenance phase. If all goes as planned, Davis won't receive another CBC until May 10th, and won't have chemo again until May 11.

Thank you for your continued support and encouragement. We draw our strength from it.

We will keep you posted.

4/10/2012: 1:15 PM

Boy, what a pretty wonderful week.

Davis' former baseball coach, Dustin King, races at the local speedway. This year, he has a "Team Davis" car. It's awesome looking. Davis was tickled that he was able to autograph a car with his name on it. Annakate was able to sign it as well, which completely made her day. Quite a few people have commented on how fantastic the Team Davis car looks. The King family has been so supportive from the very beginning. . . just another wonderful family in a fantastic community looking out for us. We want to thank Dustin for doing this on Davis' behalf, and we look forward to catching him race his car.

Davis spent most of the weekend being a happy, healthy ten-year-old boy. Friday brought a slumber party at his friend Wade's house. Saturday brought a birthday party for his friend Drew's little brother. I thought he would be in need of a nap of Saturday, but he just kept going. Saturday evening, we attempted the races (We have actually never been before, so we were looking forward to a new experience.), but there was a bit of a hold up because of the condition of the track, so we headed home. We had planned on coming back, but the races didn't get underway until much later than expected. The kids were very disappointed, so we told the kids that is just the beginning of the season, and we will be able to make it to another race.

We were all wearing our matching North Side Bodies - Dustin King shirts Saturday night.
We are looking forward to dressing up again and heading out to catch a race.

Easter was nearly perfect. The morning started with the children opening their little Easter gifts. Annakate has wanted a pocket knife for quite some time. Her eyes were a glow as soon as she eyed that little rectangular box. As soon as she opened the knife, she sliced her thumb. Hmmm. In retrospect, the pocket knife was probably not a good idea. She hasn't touched it since.

After church, we gathered at Grandma Hawkins house. In true Hawkins Easter fashion, we had a huge Easter egg hunt. I don't know if the kids enjoy the hunt or the counting of candy and coins more. By the end of the hunt, there were still fifteen eggs unaccounted for. I am sure Grandma will find them mowing or what not.

I guess as long as I shop for them, the boys will continue to match. They
never complain. Their only demand is that I don't put them in pink. :o)

I love this picture.
The egg hunt was such a frenzy.

Over the weekend, Davis developed some raspiness in his throat which settled in his chest. He now has a cough. Thankfully, he hasn't developed a fever and still continues to feel pretty well. I am pretty sure that it is sinus or allergy related. The doctors will take a look at him on Friday. There is a pretty good chance that his lumbar puncture (spinal tap) will be cancelled, because there is an increased risk for problems if anesthesia is mixed with cold symptoms. His new antibiotic breathing treatment might be postponed another month as well because of his sickness. We don't really know until they are able to evaluate him.

Easter afternoon: Davis trying out his new kite.

We will head down on Friday for his monthly chemo appointment. If all goes as planned, Davis will receive chemo via his port, chemo injected into his central nervous system via lumbar puncture, and a breathing treatment to ward off lung infections. We will also pick up his next monthly round of oral chemo at the pharmacy. Hopefully, yet sadly, this will be the routine for awhile.

Easter afternoon: Annakate went fishing. Even with Papa Coffey's and my help,
she didn't catch a thing. I encourage her by telling her she is learning the art
of patience and the skill of fishing. She said, "Mom, I just want to catch a fish."
Yeah, I think she missed the point of all that good encouragement.

Other than that, it is normal as usual. Davis is looking forward to baseball getting underway. And Annakate is loving soccer and taekwondo. We are still adjusting to being on the go so much. It was nothing for us a year ago, but when Davis was diagnosed, life slowed significantly, and we are all struggling at readjusting to a faster pace. Not that we don't welcome it, we just aren't used to it.

Even though we still have battles to fight (mood swings, fights over medicine, etc) and still have to chase out some fears (fevers, sickness, relapse) every now and again, we are thankful for the routine of the maintenance phase. I sometimes chuckle at the things I find myself thankful for anymore. I actually thanked God the other day for giving Davis allergies. Last year, before we knew Davis had Leukemia, his spring allergies had disappeared. We found it very odd that he had not one single sneeze all spring. We didn't know what to contribute it to, but we weren't really worried about it. Besides, who goes to the doctor because they no longer have allergies? Well, we later discovered that the cancer was suppressing his antihistamines, which eliminated the allergies. Having allergies is a sign that the cancer is no longer there.



Update on Cory. He received a CT scan that revealed that the tumors in his body are responding to the chemo, but the bone masses have not changed. He's very homesick. Pray for this little guy and his family. If he is still in the hospital on Friday, we may stop in for a visit. Generally, Davis dreads going over to the in-patient side if he doesn't have to (not sure why, he doesn't say, but I can imagine why), but he may for Cory. We'll see. 

We will keep you posted.

The Famous Cheese Rap

4/4/2012:  11:11 AM

This is far too funny not to share. Davis wrote a rap about cheese. I was able to catch it on video before he thought otherwise. As any mother does, I think Davis can grow up and be just about anything he dreams he can be. I am not sure if rap star was on my long list . . . .we'll see.

Remembering What the "Old Normal" Feels Like

4/4/2012: 10: 15 AM

We have had an amazing few days. Kyle is ever busy in the fields, and the kids have started their spring/summer sports. Annakate is doing a little soccer clinic in addition to her taekwondo, and Davis had his first baseball practice on Monday night. This is the kind of busy I love - that I dream of. We are nearly into a routine of school, free time and snack, sports, shower, homework (and meds for Davis), and bed. I'm just crossing my fingers and saying little prayers that the bottom doesn't fall out of this. I am very ready for no set-backs now that we have had a little taste of the good side of the maintenance phase.

Gardening.

Annakate attended a birthday party/pool party this weekend and ended up with a bad case of hives. Another trip to the doctor on Monday. I suspected that it was an allergic reaction to the pool/hot tub because the rash was worst where her swimsuit would have been and it is common for pools and hot tubs to not be balanced properly, leading to bacteria growth in which Annakate is allergic. I was right. While we were at the doctor's office, we also did a follow-up on her lymph nodes, which are still enlarged. It would be nice to assume that the enlarged lymph nodes in her neck were caused by sinus fluid in her head (She has been struggling with allergies and sinus issues as of late.), but since the nodes in her groin were also enlarged, we couldn't really blame it on sinus problems. We headed over to the lab for a CBC and CMP. A few hours later, I was told that her labs came back within normal limits. We aren't any closer to finding out why her lymph nodes have been enlarged for the last four months, and as long as her levels look good and she is asymptomatic, there is nothing to be done. I just pray that the inflammation goes away, so I can worry a little less. She feels great today. The rash is nearly gone and the sinus pressure is subsiding.

Totally showing her brother up. She smiled through the whole
blood draw and complained how much it hurt all the way
to the car.

Davis has been doing relatively well. He is still pretty tired when he comes home from school, and I am not sure when or if this part of it will go away. I encourage him to rest and sleep when he can because that is the best time and way for the body to repair itself, but he doesn't.  Lately, he has struggled a lot with sleeping. He just can't seem to shut his mind down at night. There have been so many little changes over the last week, and each one seems to chip away at this wall of cancer that stands in front of us. This week alone, we have some new firsts since diagnosis: baseball, dentist appointment, slumber party with friends. And today, I teared up after dropping Davis off at school. Davis had student council this morning. I pulled into the drop off lane, he jumped out, grabbed his lunch box, a couple of parting words were exchanged, and then he was gone. I realized that this is the very first day - all year - that I have not carried Davis' back pack and walked him into school.  I don't know how to explain it, but I compare it to the feeling you get when you witness your baby's first steps . . . that mix of both joy and sadness. One step closer to independence, I guess.

random photo. Cookie break at Grandma Hawkins.

random photo. On the way to school this morning.

Please pray for the little guy, Cory, I mentioned a couple of blog entries ago. He was in ICU for a bit because of fluid in his lungs but has since returned to the 9th floor (cancer and blood disease floor). He is struggling to breath comfortably, undergoing chemo and many transfusions, suffering from fever. He and his family will be spending Easter in the hospital, while most of us will be dressed in our finest for services and bellied up to tables full of homemade foods surrounded by our loved ones ready to fellowship. I can't help but feel horrible pangs of sadness or guilt  . . . or I don't know which it is . . . as I watch my son grow stronger and get healthier, as Cory faces one set-back after another. But I know God can touch Cory just as softly and quietly as He has touched Davis. And I think back to when we were walking through the darkest part of journey . . . the part past shock and fear . . . to the part of near desperation, and I remember how often I thought how thankful I was for the people who were constantly calling out Davis' name in prayer, and I remember personifying God and hoping He would be so annoyed of hearing Davis' name said by ten . . . hundreds . . . .a thousand people that He was would just hurry up and heal him to shut us all up. (Not that I believe that God really gets annoyed by our prayers.) I know Cory needs that now.

Thank you for everything. I hope by now you know what everything is. We can't thank you enough.

We will keep you posted.