Low Counts . . . Again

11/14/12:  1:31 PM

We had a great weekend.  My family was in town to celebrate my parents (Dad and Step-mom) 25th wedding anniversary. We visited with my aunts whom I have not seen in seven years. We celebrated with a nice family supper.

mi famiglia. My dad and my aunts.

 

Last Thursday, Davis hit his knee pretty hard on a chair at Taekwondo. It bruised instantly. We didn't worry too much about it.  Over the next couple of days, I noticed little bruises on Davis's arms. I asked him from where they came, and he had no idea.

Monday night, Davis started complaining of a pain in his lungs. I was immediately concerned about a pulmonary embolism stemming from the horrible bruise on his leg. Kyle and I decided to call the hem/onc doctor on-call to make sure we weren't looking over any symptoms.  After explaining the symptoms (pain under the rib, difficulty taking deep breaths, sore rib cage), Dr. Herman felt that an embolism wasn't likely, but she did want us to check Davis's counts, since the bruises were numerous.

On Tuesday, Davis came home from school sick. I was at work, and Kyle was taking Annakate to a doctor's appointment in Effingham, so my mother-in-law saw to Davis. She picked him up from school and took him to get a CBC.  Within thirty minutes, Sarah Bush had notified St. Louis Children's who notified Kyle who notified me. Davis's counts were critically low. His ANC, which was over 2000 to weeks ago (over 1500 is healthy), was now 237. 

Side note: My mother-in-law, Marylee, is amazing. It is because of her (and my amazing husband among others) that I am able to teach again. She has watched Davis on numerous occasions when he has come home sick or stays home sick, and she is so willing to help out whenever needed. I am very grateful for the support we receive from everyone, and I am thankful to have such a caring family on which we can depend.

The clinic decided that Davis needed transfusions, which led us to St. Louis today. When Davis and I arrived, another CBC was done. His counts have dropped even more since yesterday. Davis will receive almost two pints of red blood cells and nearly a pint of platelets today. He has to be pre-treated (Benadryl drip) before his platelets because he had an anaphylatic reaction a couple of times ago.  We are hoping that these transfusions will be what is needed to boost his bone marrow until it starts working for itself again.

Causes? If you remember, Davis had low counts for nearly a month about a month ago. It is likely that the doses of oral chemo, 6MP and methotrexate, he is receiving is too strong for his body to handle. The plan for now is that Davis will hold off of oral chemo until his counts improve and recover, and then he will be given his oral chemo at 1/2 dose rate. The oncologists will slowly increase the amounts until they found a tolerable level for Davis. Caroline, the PN whom I met with today, believes that a virus is probably not plausible now. She did mention that there is always a concern for relapse with persistent low counts, but there are no blasts in the blood to indicate that. Although not comforting, her best answer to whether or not his low counts could be related to a relapse was, "If it happens, it happens. Eventually, a relapse will show itself." 

I am confident that this is not a relapse. I pray against it every night - all the time. I serve a prayer-answering God, and I am not interested in doubting Him now.  Low counts are just the bumps in the road on this cancer journey. An inconvenience, that's all.

 

With that being said, we sure love and appreciate your prayers. Sometimes I feel like these little hiccups are wake-up calls or slaps in the face to remind us (my family) that we are not "normal" and although, we have fallen into a "normal" routine, we still have a very special set of circumstances we must endure every day. I think these moments help me to not forgot what we have been through and how far we have come. I never want to forget or belittle how hard my son has fought to stay alive, or how much my family has suffered and grown because of cancer. Spending an entire day in the chemo lounge helps me to remember.

Davis's spinal and port chemo have been postponed for now. His next appointment will be on November 30. The hope is that the two-week break will give his counts time to recover. His oral chemo is postponed until his counts bounce back. The only meds that he will be on for the next week will be his side effects meds.

We will continue to pray for a count jump and protection against a relapse as he enjoys the break in taking medicines.

We will keep you posted.

Didn't Quite Make It to the Wedding

11.7.2012:  11:00 PM

Halloween came . . . .and it went.

Davis was an FBI agent and Annakate was a flight attendant.  They were so super cute.

 

 

 

School for Davis last week was hit and miss.  He developed a headache on Sunday, and then it came and went all week.  He also was complaining of being super tired and dizzy. His belly hurt on and off too. We kept monitoring him for fever, but a fever never came. We called the clinic on Monday, and the team recommended that we keep an eye on him, because it was probably a developing virus.

The symptoms persisted. He kept coming home from school sick.  I called the clinic again on Wednesday, and it was decided that a blood test would rule out a count issue. On Thursday, the nurse called and told us that Davis' counts were great. On Friday, after the team had time to discuss the unusual symptoms, we received a phone call. 

Kyle and I were on our way to St. Louis for a family wedding when a clinic nurse called me and told me that it was decided that Davis needed to go to Carle Hospital for a CT scan. It had already been ordered and the ER was expecting us.  The problem was that we were outside of Greenville, Davis was in Ashmore, and Champaign was an hour north of him. We turned around and headed home. 

Davis's oncologists did a great job of putting two and two together. Davis' symptoms were consistent of a concussion. The CT was ordered to make sure that Davis did not have a brain bleed or any soft tissue damage. The Carle ER doctor was wonderful. He concluded that Davis did indeed have a concussion, and the CT scan proved that there was no sign of a brain bleed or tissue damage. Davis may experience his symptoms for a couple more weeks, but there is no specific treatment for him. Sadly, we can't give him Tylenol to help with the headache, which seems to be the biggest issue for him now.

 

Davis is feeling better. He doesn't seem as fatigued as he was last week.  The headache still lingers but improving.  He is scheduled for chemo and a spinal tap the day after Thanksgiving.  The oncology team will assess him then.

We celebrated Annakate's birthday with a nice, little party.  She loved it. Wienie Roast, Smores, haunted hay ride, games, cake, presents, friends and family. . . . . the making of a wonderful party. It was very chilly, but the kids were resilient.

We are so blessed.  With Thanksgiving right around the corner, I can't help to count my blessings.  God continues to keep His hand on my children, and I am eternally grateful that I serve a God who answers prayers. I am amazed at how far we have come in the past 15 months, and so appreciative of every single day.

We will keep you posted.

A Feeling Worse Than Fear

Soooo Sorry!  Apparently, I never posted this one from a couple of weeks ago.

10.8.2012: 11:00 PM

I can't remember when I last blogged or what I wrote, so I may be repeating information, and for that, I apologize.

Davis' chemo was withheld for three weeks due to low counts. During those weeks, his ANC (immune system) remained neutropenic (below 500).  We had spoken to the nurses at Children's on several occasions and were at one point getting CBCs every couple of days.  The nurses were at  a loss as to what was really causing the low counts. The best guess was the chemo had wiped out his system. Every nurse I spoke to said that the doctors would discuss the low counts with me when Davis came in for his monthly chemo appointment and check-up.

I hated what this sounded like. I refused to give in to fear. I wasn't going to worry about something that was nothing at that point.



We have watched Forest Park change from season to season from this window.

Kyle and I both went to the appointment at Children's on Friday, September 28. The nurse drew Davis blood and sent it off for a CBC. His ANC had dropped from 391 to 309. And then Dr. Schapiro stopped by for the check-up. She checked out his ankle. Davis has been limping since June. We have had a couple of x-rays, and there were no breaks evident. The next step was an MRI, but we wanted her to check it out first. She believes that his ankle pain could be contributed to extended use of chemotherapy, which has caused necrosis in his foot. I am not exactly sure what all of that means, but she didn't act like it was a big deal. She isn't concerned about his limp - only an inability to walk. We visited, we joked around, we then discussed the count drop. And then she mentioned the word relapse. It was an odd situation really. She discussed the possibility of relapse so casually, so nonchalantly. In return, my posterior remained calm, and on the inside, my mind was whirling so quickly, I nearly became physically sick right there. Relapse? Low counts can be a reflection of one of three things: chemo taking a toll on the body, an infection (usually accompanied by a fever), or relapse.

My thoughts were moving so quickly during this conversation. I remember noting that we were holding this discussion in the very same exam room we started this whole journey in in July 2011. Needless to say, my mind was near panic.

It was then I realized that feeling worse than fear: dread. The difference between July 5, 2011 and the potential outcome of this particular day was that we had already walked the road of all things cancer: radiation, hair loss, nausea, long hospital stays, masks, needles - lots of needles, etc.  Until that moment, I had nearly forgotten the long nights, my baby's tears of homesickness, the awful Peg shots, the constant cleaning and the ever-present smell of Germ-X, the transfusion after transfusion . . .

Dr. Schapiro recommended doing a blood smear sample to see if there were any cancer blasts in Davis' blood.  The blood is the last place that cancer cells show up in a Leukemia patient, but a smear is the least invasive and gives us an idea of what might be going on. Kyle was pushing for a bone marrow biopsy to be done that day. We were adamant about not wasting time if relapse is a possibility.

The blood smear came back. Dr. Schapiro invited Davis and I to take a look at it. It was awesome. Davis was in his element. He was throwing out terminology I didn't know he knew. He and Dr. Schapiro bonded over blood. You could totally tell that they were both enjoying the science lesson that Dr. Schapiro shared. She showed us his platelets, red blood cells, white cells. She showed us some Atypical lymphocytes - an indication of an infection. We examined his monocytes as well.  It was fascinating. She reminded us that Davis' blood looked good for Davis, but would look not so good compared to my healthy blood.  Luckily, I have never examined blood, so I can't judge Davis' bad blood against others. The best news: no blasts.

Last Monday night, Davis spiked a fever. 101.1. Anything over 100.4 is a trip to the ER. Kyle and I were pretty confident that Davis would be transferred to Children's since his ANC just three days earlier was 309 (Any time Davis is "f and n" (fever and neutropenic), he has to be transferred.) Kyle took Davis in while I packed our suitcases, contacted my boss, wrote lesson plans, packed Annakate, etc. A couple hours later, Kyle texted me with some amazing news. Davis' ANC was over 2000! Well, if Davis did have an infection, his immune system would try to fight it, the the increase in neutrophils. He had also been on Prednisone for a couple of days. Prednisone increases white blood cell production which causes the ANC to go up. But Kyle and I think that his jump in counts was a God thing - an answer to collective prayer. Davis was treated with a broad spectrum antibiotic and sent home. He has been feeling pretty good ever since.

Oral chemo resumed last Wednesday. We are so thankful. The longer Davis went without chemo, the higher the risk for relapse. We will do a count check towards the end of the month before his next appointment. Lord willing, the CBC will be perfect.

Things are busy around here. Davis is finally an orange belt in Taekwondo. He faithfully practices the piano and his drums every evening. I love it. He is really excited about an upcoming marching band performance. That is all he talks about.

Annakate is doing well in Taekwando too. She earned her green belt. Only five or so more to go to black belt. She really impresses me with her sparring. I watch her spar and am amazed that my little girl can kick and punch like that.


Harvest is rolling by. Kyle is making progress. I am thankful for the rain when it comes because that slows everything down a bit. With his busy harvest and my crazy work schedule (just survived a fun homecoming week), sometimes I feel that we survive the day, the week. I hate that about busy lives, but I am so grateful to be where we are now. And I catch myself often thinking, "This time last year. . ." I just don't ever want to lose sight of where we have been and how far we have come. . . not by our own devices, but by the help of God and our friends and family. I just want to be thankful and grateful always. I never want to take a day, a week, a month, a year for granted, because too soon they pass, and very easily be gone forever.

We will keep you posted.

Illinois Dream Hunt

10.28.12:  10:00 PM

Davis was blessed with a wonderful opportunity to partake in a deer hunt sponsored by the United Special Sportsman Alliance. He and eleven other children with life-threatening diseases or illnesses met in Southern Illinois to hunt. Davis and Kyle really hit it off with Davis's hunting mentor, Terry. Terry is quite a hunting enthusiast and expert and kindly donates his time. He taught Davis all sorts of things about hunting.

Davis and his hunting mentor, Terry

 

Sadly, Davis did not tag a deer this time. He did, however, bring back a gigantic goose egg and substantial bruise on his forehead. Apparently, he leaned into the scope on his last shot, and it kicked back and got him.  I am sure he won't do that again.

Today at church. Notice the bruise?

 

I want to thank the USSA for this opportunity. Davis loved the experience and is super excited about all things hunting.

Davis had chemo on Friday, and all is well.  His counts were great. His ANC (immune system) is over 2000 (Healthy kids run over 1500). He receives a breathing treatment of albuteral and Pentamadine every month when we get chemo.  This breathing treatment protects him from fungal lung infections and fungal and profound pneumonias, which people receiving chemo are prone. However, this time, he didn't receive Pentamadine. He was switched back to an oral pill, Septra. Apparently, there is a drug shortage of Pentamadine and Children's has been unable to get a hold of it. I am hoping that the shortage is short-lived. I like the Pentamadine because it is one less medication that he has to take on a regular basis.  

The next chemo date is scheduled the day before Thanksgiving. Davis will be receiving another spinal of Methotrexate.

I downloaded pictures from Davis's camera this evening to get the hunting pictures. Davis had over 180 pictures sitting on it. It was quite a gold mine of sorts. I enjoyed looking at the things he feels worthy of capturing on camera. I thought I would share some of them. Keep in mind, these pictures range over a ten-month period and were taken by eleven-year-olds.



a weigh-in in clinic around March. My, how much
he has changed. Counting our blessings!

In the Capital Building in July

I love this picture!  He cracks me up! 
Washington, DC

He took this one last week at Fox Ridge. The 6th graders at his
school went as part of a rewards program. Beautiful, isn't it?

Goofing around at Fox Ridge.

Thanks for the continued prayers and support.

 We will keep you posted.

Saturday Blood Boost

9/22/12:  5:00 PM

Well, Davis had a week off from chemo because of low counts. He was retested on Wednesday, and his counts were still low.  The team decided it would be best for Davis to postpone his chemo until Monday. On Monday, he is set to have another CBC and CMP. This will determine if his counts have increased enough to resume chemo. 

 

 

Davis has been experiencing some fatigue, headaches. and dizziness. We can naturally assume this is related to the low counts. Since we have been down this road before, Kyle and I decided it was best to bring Davis down to St. Louis today for a transfusion. The transfusion will eliminate the symptoms and will save us a trip down here on Monday. We are also hoping that if his counts come up, he won't need to postpone his chemo given in clinic on this coming Friday.

 

It has been a very long time since we have needed to be in the SLCH ER. There is such a comforting sorrow being here. Familiar. It's depressing thinking of why we have been here, but the times we have spent with one another -- just being together -- have been beyond wonderful.

 

Our day started at 9:30 this morning. When we hit St. Louis, we attempted to avoid the stand-still traffic (part of the interstate is closed) by detouring through town. What a mistake! There was a parade taking place, which further detoured our route, and I am pretty sure we hit every stop light along the way. We finally checked in a little after noon, and we have about an hour's wait on Davis' transfusion. (5 hours and 36 minutes into our ER visit)

The CBC here in the ER revealed that Davis' counts are going up. His red blood cells were at 7.9 on Wednesday, and now he is over 8.0 (before transfusion). His platelets were 43 and are now over 50. The blood transfusion will give him the boost that he needs to feel like himself again.

It really is crazy how something as simple as a blood transfusion eats away at eight or more hours of the day. Hopefully, we will be released from here in time for a late supper. Davis is eager for Kyle to try a restaurant on The Hill that Davis and I ate at a few months ago. Eating out is a nice perk for the trip.

If all goes as planned, Davis will have a blood test on Monday. Hopefully, his counts will have increased significantly, and his chemo will be resumed on Monday evening. With the increase in his counts, Davis will head back down to St. Louis on Friday for his monthly check-up, in-clinic chemo, and breathing treatment.

You know, just today, we were talking to the ER nurse about how blessed we are. Davis hasn't received a transfusion for the last six months. He has done so well. And as far as what caused the count drop now, the doctors believe it was a combination of the chemo and a virus. Their best guess is that Davis' immune system wasn't strong enough to fight off the chemo and a virus causing the neutropenia and anemia. This is expected. We just count our blessings because Davis is doing so well, and his body (and immune system) is still responding to the chemo and is growing stronger.

We will keep you posted.

A Bloody Nose and a Bucket of Tears

9/11/2012:  10:27 AM

 

Another great week.  I am a junior class sponsor this year, so I am "lucky" to work all of the home football games. This Friday led to quite an adventure. A storm popped up before game time. We were set to ride it out in the concession stand until we received word to take shelter because of a tornado warning. Soaked to the bones, we (a handful of teachers and students) ended up spending the evening in a hot gym.  The game was finally called off just before 8:30 pm, nearly three hours after we had arrived. Despite the circumstances, it was pretty fun just hanging around and visiting with everyone. 

 

The horrible weather gave way to a beautiful Saturday. The game was re-scheduled, and our team won. Yay! Davis spent the night with one of his friends, Wade, and Annakate took advantage of having Davis out of the house by having a slumber party of her own.

Yesterday, Anna had an adenoidectomy and a turbinate resection. She has never been able to properly breathe through her nose. For years, she has been on a variety of medication to treat this problem: allergy pills, nose sprays, inhalers, breathing treatments, etc. We have seen quite a few doctors as well. Finally, the ears, nose, and throat specialist suggested we do this procedure. It is supposed to open the passage ways in her nose (nearly closed) and eliminate some of her allergy issues.

She was all smiles before the surgery. The doctor said the surgery has minimal side effects, and she would feel better in a matter of hours to a day. I guess I was a bit naive, because I was expecting a much different outcome after the surgery. Annakate cried a lot that she was in pain (throat pain from the breathing tube) after the surgery. The doctor assured me that the teary response was from the anesthesia. The more she cried, the more her nose bled. After the doctor removed the packing, it seemed to just run down her face. She was given morphine and codeine and was still complaining of pain.

She was finally released early afternoon, five hours after we arrived. She was complaining of sickness (stomach upset) for the first fifteen miles, so I pulled over quite a bit. It took forever to get home. And home was short-lived. Anna had to ride around with Kyle in the semi, while I took Davis to the doctor. Davis has another in-grown toenail. The doctor prescribed some antibiotics. He should be as good as new in a few days.

While Kyle was watching Anna, the upset stomach got the better of her, and she began to vomit. This continued for most of the evening. She did manage to eat a breadstick before bed and sleep for most of the night.

Annakate is feeling better today. She is eating noodles and crushed ice, and I have backed her pain medicine down. Her nose is still bleeding some, but not like it was yesterday. I am pretty sure she will feel like going to school tomorrow. Thank goodness.

I am hoping this week slows down -- way down. Both kids are on the mend, and the field work seems to be running smoothly thus far. I am still trying to find that balance of teacher, wife, and mother. Finding the balance seemed easier before Davis had cancer, or maybe I am just remembering it incorrectly. I will get there.

I know several have asked if Davis was able to go on his Make-A-Wish trip. We have not yet, but we will. Lauren, Davis' Make-A-Wish rep, has been in contact with us, and we are hashing out dates. Also, Davis' friend, Jordan (roommates with Davis last July, diagnosed a few days after us with Lymphoma) asked Davis to go on a bear hunt in Wisconsin with him through an organization called the United Special Sportsman Alliance. After being in contact with the organization, it was decided that Davis would best be suited to do a deer hunt, since he has never been hunting before. I truly can't imagine Davis shooting a deer (He has such a tender heart.), but he seems excited enough. I pray that Kyle is out of the fields and able to accompany Davis. I am not sure what good I will be in a tree stand hunting deer. If Davis enjoys this experience, it is our understanding that he will be eligible to go on the bear hunt next year. If you are interested in more information about the USSA, here's the link: www.childswish.org.

We thank you for the encouragement and prayer to this day. I love it when people walk up to us when we are out and comment on how well Davis looks and how they have been thinking and praying for us. It is amazing how many people have been touched by cancer, and how many people are truly pulling for Davis. With that being stated, please continue to pray for Cory's parents and sister. As expected, they are so broken and still struggling to make sense of life without Cory. Not a day goes by that I do not think of this family.  I can't even imagine the pain that they are going through. They need prayer.

We will keep you posted.

Another week - Another Month Down

9/3/2012:  4:05 PM

Well, we have survived another week. We are as busy as ever - light worlds away from where we were one year ago.

On Wednesday evening, Davis went to get his CBC and CMP. All was well. He had an ANC (immune system count) of 1108, which is great. The doctors want to keep his ANC between 1000 and 1500. His platelet count was a little on the low side at 72. The doctors like to keep that above 75 for procedures but don't transfuse until 10 or so. Since Davis was only shy a couple of points, they decided to keep him on schedule for his spinal. The low platelet count sure explains all of the bruises that are popping up on his body (mostly his legs).

On Friday, Davis, my mom, and I left at 5:30 AM for St. Louis. We arrived at the 9th Floor Clinic right on time for our appointment. There were several nurses wearing their Team Davis t-shirts. I just love that. Fridays in the clinic are crazy, and because of that, Davis missed his APC (ambulatory procedure center) appointment for his spinal by ninety minutes. Luckily, the clinic and the APC communicate well.

 

The clinic nurse pretreated him with Kytrel, an antinausea medication, before his spinal. This helped him tolerate the anesthesia a bit better.

Davis didn't have to wait too long for his spinal.

 

 

Davis slept for an hour. He has to lie on his slide for an hour to help prevent spinal headaches that he has been prone to getting in the past. He woke up in a surprisingly good mood. That is a rarity. 

 

Once we returned to the clinic, Davis busied himself with the Xbox Connect. There is a lot of down time between the chemo (which takes all of five minutes to push in his port) and the breathing treatment (which is done done in a special room and lasts thirty minutes). The clinic was crowded, so we found ourselves hanging out in the little play area near the back of the lounge. I am glad that Davis found something to keep him occupied. 

 

 

 

Since Davis has to fast for his procedure, we let him pick where he wants to eat afterwards. This time, he chose the Waffle House in Collinsville. He ate quite a bit, but apparently, it wasn't enough. I had to stop and get him an Arby's value meal in Vandalia because he was "starving". It rained all of the way home, but we managed to stay in front of the stormy weather.

 

 

Davis will head back at the end of September for his monthly chemo treatment. He still continues to take oral chemo every day alongside other medications. I remember how this time last year it seemed that our lives revolved around medication dosages and schedules. Now, medication is merely an inconvenience. He takes his meds without complaint and quickly now. Last year, it would take a daily fight of a small army to get him ot take his meds. Now, I can put the meds on the counter, and he takes them. NEWS FLASH:  Davis swallowed three small pills tonight!  To many of you, it may not seem like a big deal, but this little step is earth shattering in our home. Davis has a major phobia about pill swallowing. Hopefully, we have reached a turning point. We will see. We sure were whooping and a hollering here tonight though.

 

 

Every visit to clinic leaves me feeling ever more thankful and blessed. We have a wonderful community of family and friends who support us unconditionally, and we have a son who defies cancer while maintaining a normal eleven-year-old life. We are so thankful -- and amazed -- that Davis never lowered his own expectations while in the toughest throws of cancer treatment. He still brought home straight As and participated in time-crunching activities, like Band and student council. We are proud of him for setting higher expections than we require. I think he is pretty amazing.

 

 

And although life is much easier than it has been in awhile, I still ask that you pray for Davis and our family. I have no doubt that God is going to heal Davis from cancer forever; however, I still pray against relapse and organ damage daily. I pray that God makes him healthy and strong.

 

 

I am never thankful for cancer and I truly do hate cancer, but I am thankful for the opportunities brought to me by cancer. I am so thankful for the opportunity to re-direct my time towards my home and my children and husband. I am thankful for the re-focus of my priorities. A stack of essays to grade and a clean house aren't near the top of the list anymore. I am so thankful for every day with my babies, because life is so short and the their childhoods are even shorter. I am so thankful for the acquaintences that we now consider our friends. Cancer brought us closer. I am so thankful for those cancer survivors and their families who have journeyed parallel roads, because we are forever bonded by the illness that we beat. I am especially thankful for the children (and their parents) with whom Davis attends school. The kids in his class and his school never shied away from him or his sickness. They embraced him - never treating him different. Having survived my own adolescence and being a teacher, I know that some kids can be cruel to kids who are different. This has never been Davis' experience. And I know that children would not be so kind and accepting if they did not have amazing parents teaching them. This is just the tip of a great many blessings for which I am grateful. It may seem at times that I dwell on the physical and mental -- often negative -- side effects of cancer. Well, I guess there are positive, life-changing side effects as well.

 

 

We will keep you posted.