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.

More Normal Than Not

3/21/2012: 5:35 PM

We enjoyed what was left of the kids' spring break by spending most of it with family. Kyle's aunt Tricia was visiting from Georgia, and Grandma Hawkins had a birthday. We spent some time on Friday and Saturday with our Hawkins family, and Sunday afternoon, we celebrated another birthday as my niece turned 3.

Kyle and Kennedy playing with the bubble wand.

Davis and Annakate are doing a pretty good job of finding a routine of school and chores. We had a pretty good routine until Davis wound up in the hospital. It is still a struggle for Davis to take his medication; there are nights when he doesn't go to be until 10:45 PM because he won't/can't take his medication. And of course, that makes for a rough morning, where he has to repeat the process. 

His medicine causes a bit of a conundrum. The predisone he is on causes him to be hungry all of the time. He eats from the minute he gets up until the moment before he has to brush his teeth before bed. One of his chemo meds, 6 MP, has to be taken on a completely empty stomach. Kyle and I have been putting Davis to bed, and then waking him up two hours later to take his 6 MP. It's unusual, but it's working. Davis is still groggy from being asleep, so he doesn't resist taking it as much. And being asleep, he isn't super hungry from the prednisone.

I know I blog it all of the time, but we are so moved by the love and generosity shown to us by friends and family. During spring break, Macy, a little gal who is in band with Davis, took her trumpet and her big heart and played songs for people. They, in turn, tipped her. She took the tip money that she raised and gave it to Davis. Wow. We were so touched by this child's thoughtfulness. I am not sure if she reads the blog, but if so, thank you, Macy!

Thank goodness the weather has been cooperating! She rides every day.

Davis has been feeling pretty good the last few days. He has some major allergies, but who doesn't? He has been playing outside quite a bit, and therefore, he is coated with sunscreen every morning. Chemo and sun exposure do not mix. We have had our fair share of emotional and behavioral issues with Davis as of late (50-80% of children with cancer suffer from depression or issues with compliance), but we are confident that with the help of his psychologist, our united front, and lots and lots of prayer, we will be beyond them soon.

I am sorry that I don't have any counts or medical news to report. It seems odd to me to not know more about Davis' health. This part of meeting the maintenance phase is going to be quite an adjustment for me. We are supposed to get a CBC and CMP next Thursday. However, no medical news is a blessing in and of itself. It means that we are inching our way closer to being done with cancer treatment.

We continue to pray for a complete healing for Davis. When I tuck him in every night, I personally pray over him right then and there. I pray for complete healing, a strong bone marrow, no relapse. I pray for his heart, liver, and kidneys that they stay strong. I pray for his mind and those battles that he fights that we can't see. I pray that he is a witness for God and a leader in the world. I pray that he may see the blessings brought forth by cancer. And I pray that God builds a hedge of protection around him and keeps him safe for all of the days of his long, long life.

We will keep you posted.

St. Louis Channel 5 News Story

3/18/2012: 9:48 PM

While Davis was inpatient at Children's, he had an opportunity to be interviewed by Heidi Glaus, a reporter from the KSDK news station. She was doing a piece promoting Camp Rainbow, an organization that does wonderful things for the children with cancer.

You can see Davis and his little friend Allie in the news story. Just click on the link below.

http://www.ksdk.com/news/local/story.aspx?storyid=310369

Thursday, We Did Not Have Cancer

3/17/2012:   4:50 PM

Happy St. Patrick's Day! 

I am not sure when I blogged last, so I will catch you up on the last couple of days.

Thursday morning, Davis and I headed in for blood work. Davis' blood was so thick, that it was clotting before Valerie, our wonderful phlebotomist, had a chance to finish. We finally decided to do a peripheral stick in his arm to save time and multiple finger sticks. We then headed out to pick up his buddies.

Davis had had these three best buddies since kindergarten. They all have such different personalities and interests, but they complement one another fantastically. They listen to one another, bounce ideas off each other, and help one another without thought. They are truly kindred spirits. And I think that Davis is at his best, both emotionally and physically, when his friends are around. It is truly like the cancer melts away . . . as though it never really existed. What a blessing these boys and their families have been to us. They haven't shied away at learning and adjusting to our new normal, and I am grateful. Last week when Davis was in the hospital, one of the boys texted Davis, "How are your counts?" I couldn't help smiling at that oddity from one ten-year-old to another.

So Thursday, the boys started with a two-on-two Nerf gun war, and eventually we headed to the farm for fishing and go-kart/4-wheeler/golf cart driving/riding. Hands down, it was one of the best days we have had in a long time.

Friday morning was bound for disaster when I neglected (because I forgot) to get Davis up at 5 AM to eat a little something. He was scheduled for a spinal tap at 1:30 PM and wasn't allowed to eat anything after 5:30 AM because of the anesthesia. When I got him up at 8:00 AM, it was too late. It was a miserable ride down to St. Louis filled with his complaints and bad attitude and my resolve to completely ignore him, which just seemed to fuel his growing fire. He finally gave up and fell asleep at Troy, which was not soon enough but always my luck. Once in clinic, he was fine, and the chemo and spinal went well. 

Davis had severe nausea on the way home. I am sure the combo of anesthesia
and chemo was to blame.

Dr. Bednarski, one of Davis' oncologists, explained that starting the maintenance phase is the third scariest time for families. Diagnosis is the first, and end of treatment is the second. Until now, we have been dependent of Davis' weekly counts. They determine if he needs transfusions and the strength of his immune system. In the maintenance phase, Davis will only get a CBC once a month. I asked the doctor how we will know what his counts are and how strong is immune system is, and he replied, "You won't". I wanted to cry. I am not a risk-taker and I am a bit of a control freak (even though cancer is curing a lot of this in me), so you can imagine why I was beside myself with this news. Apparently, Davis' counts are to be returning within normal limits (except ANC) within six months time. His ANC will still fluctuate given the chemo and viral/bacterial infections that he picks up. He will still be hospitalized for any fevers/low counts.

Other changes that come with the maintenance phase is the resuming of normal activities and oral meds. The doctor wants Davis to consume protein powder and do some endurance building activities to start building his muscle mass for baseball. Davis is also to be held accountable for former responsibilities (chores that he couldn't do because they were too germy or used chemicals). Davis has three new oral chemo medications he takes at home. His daily medications went from three to six, and that doesn't include his "as needed" medication that he takes for pain and/or nausea. Plus, the medications are tricky. Some are taken on an empty stomach, some on a full, some refrigerated, some on certain days of the week. There sure are a gazillion ways to mess this up.

Random picture. Annakate is now an orange belt.

We aren't expected to go back to St. Louis until April. Hopefully, no issues will arise between now and then.

We continue to pray for us. This new phase is already proving to be quite an adjustment. We will never be able to really thank all of you who have lifted us up in prayer and positive thoughts over the last eight months, but please know that we are forever grateful for you. My heart breaks for those who must make this journey alone.

We will keep you posted.