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.

3/29/2012: 9:30 AM

The trip down to Children's was pretty ordinary. There is more road construction on the route - something I didn't think was possible. The road construction, the drive-thru lunch stops, and the noon traffic in the city caused us to be ten minutes late.  And boy, the clinic was busy, but it didn't take Kathy, Davis' nurse, long to get him accessed and rolling. The transfusion itself takes a few hours, so we just sat around. Davis played his DS and Ipad, and I read. At 5:00 pm, he was de-accessed, and we headed home. Pretty uneventful.

The best news of the trip is that Davis has gained five pounds! He now weights 63.8 pounds. Fifteen more and we have hit his target weight. I would have to say that Prednisone, Arby's curly fries, hidden protein powder, and prayer seem to make a pretty good weight-gaining combination. I also asked about Davis' liver function. His liver levels are elevated. His ALT/SGPT was a whopping 103, when normal limits are between 5-35. The nurse practitioner Davis sees said it is not a concern, and levels have to be much higher to bring forth any real alarm. I still worry about the long term effects all of this chemo is having on his body, specifically his liver.

Davis refused to take his medication last night. I tried all of my parent tricks: bribing, sweet-talking, compromising, grounding, yelling. . . . nothing worked. Luckily, not soon after I had checked out (picked up a book and tuned out the world), Kyle came home and worked some of his magic. Davis did take his chemotherapy meds before he finally went to sleep. I am ready to look back on these times and say to Davis, "Remember when you used to fight taking your medicines. . . You drove us crazy with that." And then we will all give a sorrowful laugh thinking back, and then move on. I pray that day will come, because it terms of taking medication, the last eight months have been anything but joyful.

I know that we have been blessed by the encouragement of positive thinkers and the intercession of prayer warriors, and this is why I am about to ask what I am about to ask.

Shortly after Davis was diagnosed, Davis had an eight-year-old roommate, Cory. He and his family were from Rantoul, and we had a lot in common. We learned that Cory had been fighting rhabdomyosarcoma (basically, cancer of the tissue that causes tumors) six months before we met him. He was in remission, but the chemo was very hard on his little body and caused him to be hospitalized quite a bit. Although Davis wasn't overly friendly, Cory oozed friendliness, full of smiles and questions. He reminds me of the little children you see on the St. Jude's commercials. He is truly the sweetest, most positive, little guy I have met at Children's.

Cory was having some trouble as of late (his counts weren't maintaining), and we received word (via his blog) yesterday that his cancer is back and has spread to his bones. While this isn't ideal, it appears that doctors have a plan to treat the cancer. Cory's family is heartbroken. It seems the nightmare begins again for them. I only tell all of you this so you can send your positive thoughts and prayers to this wonderful family who desperately need them.

It surprises me how much we rejoice and suffer with and for the families we have met who are walking parallel roads with us. Their children are in a way our children - or could be our children - and cancer, something we all hate and blame for uprooting our lives and robbing our children of their childhoods, brings us together. We fight the same battles, and we all have the same fears. That idea alone is why I call on you to pray for Cory and keep him in your thoughts.

A less demanding request . . .please remember Davis and the rest of us in your prayers.

We appreciate your encouragement and support always.

We will keep you posted.

3/27/2012: 10:15 AM

It was quite a fight to get Davis to go to baseball try-outs. He decided he wasn't going to try-out after all because he was too sick and too weak, and kids would make fun of him for being so bad at baseball. I used my mom powers to discern that it wasn't really the sickness or weakness holding him back, it was the fear of being judged by his peers. That lesson right there is the hardest to teach; and I am constantly trying to instill the concept of "whose opinions matter and whose opinions don't" in my children, but it is quite a challenge. So I fudged the truth and told him that if he didn't try out like every other boy, he wouldn't be on a team. I explained to him that if he did not have the want and respect to try out, he didn't deserve to be on a team. Needless to say, he was ten minutes late to try-outs.

He did great. True, he was very weak and very slow, and I think it bothered him quite a bit. I
know that he is frustrated that his best is sub par to what it was a year ago. I can't even imagine how difficult it would be to struggle at something that you knew you could do a year ago. I reassured him that as his muscle and strength comes back, his endurance will improve, and over time, he will adjust to the feel of his chest guard, and his confidence will be restored. I hope he believes me.

Davis was feeling quite lethargic over the weekend. He told me he had been having some headaches and dizziness.  This could be caused by three obvious issues. He could have a virus. I believe that this is unlikely because Davis has had no fever or any other symptoms. He believes he could have low hemoglobin. I doubt this because his counts are supposed to be stabilizing, and his last CBC nearly two weeks ago revealed that his hemoglobin was over 10, which is good for Davis and his type of cancer. I believe that it is his Hypoglycemia, which is caused by his chemotherapy. Davis doesn't particularly enjoy sugary goodies. He doesn't eat candy or chew gum. He is sick of juice boxes and has to be forced to eat fruit. My guess is that his blood sugar is low. We went to Sarah Bush yesterday to get some blood work done to get an idea of what is going on. We haven't heard from the clinic yet today, but I will keep you posted.

Davis visited the ER to see two of his favorite people.

Ok'ed by the doctor, Davis has decided to start getting peripheral
sticks for his counts. It saves a ton of time.

We had some company last night. Donna Tammen, my grandmother's best friend, brought Davis a care package from her son, Brad, and his team, the Nashville Sounds. There were baseball goodies galore!  Davis and Annakate loved the gifts. Thanks to Donna, a cancer survivor, Brad, and the Nashville Sounds for the baseball care package!

We are still adjusting to the new routine of fewer visits to St. Louis. We are grateful for the support and encouragement we continue to receive eight months into this journey.

PS. The nurse from clinic called. Davis was right; I was wrong. Davis' hemoglobin is very low, and we will be traveling to St. Louis tomorrow for a blood transfusion. (Now I kinda feel horrible for pushing him at try-outs on Saturday.) Hopefully, the lethargy, headaches, and dizziness will cease. Please pray for a safe trip.

We will keep you posted.

Went to Hawaii on Thursday . . . .

3/24/2012: 10:05 AM

An amazing week.

My sister Amy told me about this website, Goalforit.com, that creates an online chore and behavior chart for each child in the family. I can assign the chores and behaviors a point value and when the child reaches a certain amount of points, he/she can cash it in for prizes that I have assigned. So far, so good. Davis' chore chart includes being thankful (no complaining), being respectful, and taking his medication on time without complaint. Annakate's chore chart includes no yelling, picking up after herself, and practicing the piano (something she is not a fan of). Of course, there are other chores as well. Needless to say, we haven't had the medication fight with Davis this week. I hope this is the start of something new and permanent.

There was quite a surprise waiting for Davis at school on Thursday. While he was in the hospital and on spring break, his teachers and the parents of both Miss Goodchild's and Mrs. Meyer's classes organized a day in Hawaii for Davis. Since he was unable to attend his Make-A-Wish vacation because of a hospital stay, they brought Hawaii to him.

The room was abundantly decorated. There was even a banquet table for food set up on the north side of the room. There were palm trees, fish nets, flowers, tiki torches, shells, leis; all the things you would imagine seeing in Hawaii. Some of Davis' classmates were even wearing Hawaiian shirts. When Davis walked into the classroom, he didn't get it. He had no idea what to make of it. Mrs. Meyer explained to him that his classmates' parents worked really hard to bring Hawaii to him since he was unable to go. He was speechless.

At lunch time, Mrs. Meyer's class and Miss. Goodchild's class filled the classroom for a feast. The kids munched on pizza, Hawaiian rolls, pineapple, grapes, strawberries, and cookies. The kids even had treat bags full of goodies too.  A big thank you to Papa John's for giving the classes a substantial discount on pizzas.

The feast ended with a presentation from Mikayla Kuznicki on behalf of her family. To my understanding, the Kuznicki family has a friend who is native to Hawaii. I believe she made two authentic leis for Davis. The leis are beautiful. Davis is very careful with them. He takes them out of the box, shows them off, and puts them right back up. I think he is afraid they are going to be broken.

I know that there were a lot of families involved in making this day so special for Davis and for the rest of the classes. I wish those of you who are not familiar with the children Davis goes to school with could see how these children have bonded and become a little fifth grade family of sorts.  I feel like Davis (and we) have a support group like no other. A heart-felt thank you to the Simmons family, the Schutzbach family, the Kuznicki family, the Holly family, the Cox family, the Williamson family, the Hendrix family, the Ebinger family, the Cline family, the Gandolfi family, and the countless others who helped or offered. The families of Davis' classmates raise the bar on generosity, support, and kindness; and we are forever grateful.

After Thursday, Friday was pretty anti-climatic, but it was Friday, so that was a plus. Davis has baseball try-outs today. I am a nervous wreck. I am worried that he is going to be injured or too weak to do much of anything. I don't know if he is even strong enough to hold up his bat for consecutive pitches. His whole body hurts every night and morning; we assume that he is building muscle again. He is worried that he is going to make a fool of himself in front of all of his friends. I assured him that they understand that being sick has taken a lot out of him, but he is convinced otherwise. I will let you know how it goes. The doctor did tell us that stepping back into "normal" life is difficult and scary. I guess this is what he meant.

Medically, we don't get blood counts again until Thursday. I am eager to see how he is doing. He seems great, so no worries here. We still appreciate and need your positive thoughts and prayers. This battle isn't over yet.

We will keep you posted.