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

 

1.10.2013:  5:00 PM

Happy New Year!! 

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

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

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

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

 

 

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

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

We will keep you posted.

Sending Out 2012

12.31.12: 9:00 PM

I think the last time I posted was on the 16th.  Since then, we have managed to celebrate Kyle's birthday, enjoy five Christmases, and spend plenty of time with family and friends.

We celebrated Kyle's birthday with a band concert. It was amazing. Davis did such a fantastic job. Personally, I enjoy it so much more knowing how much he enjoys it.

 

 

We had an amazing Christmas - no, several amazing Christmases. The kids received more than they needed.

I caught myself several times appreciating where we are now. Davis is a completely different young man than he was a year ago. Although not quite up to par, he has more energy and is surprisingly healthy despite his compromised immune system.



Christmas last year

Christmas this year

We have spent the greater part of Christmas break doing a lot of nothing, which is exactly what we want. We were blessed with enough snow for the kids (and Kyle) to sled and play. Davis didn't quite get the fort built that he wanted, but I am sure there will be other opportunities.

 

We are planning to enjoy the opposite extreme soon. We plan on heading out on Davis's Make-A-Wish trip to Hawaii in January. When Davis made his wish, he was in to three things:  Maine, Alaska and mushing teams/dogs, and Pearl Harbor. His wish to Pearl Harbor was granted. We were scheduled to fulfill his wish trip in March, but he ended up in the hospital for two weeks. Thus, the trip was postponed. We have gone to some lengths (mask wearing, excessive hand washing, etc) to keep Davis healthy this holiday season, so this upcoming trip wouldn't be jeopardized.

I remember how badly I wanted 2011 to end. The latter six months of the year were . . . well, I don't know. I was grateful for every day as I have now learned not to take time for granted, but each day welcomed another day of cancer treatment, survival, adjustment to the "new normal". The latter six months of this year have brought the return of the life that we knew before diagnosis. Most days, cancer is just an inconvenience.

We want to wish you a very happy new year. I don't usually make new year's resolutions (I think that any day of the year is a good time to improve yourself), but I look to the new year as a gift - a gift of another year of watching my children grow. And I consider myself among those most richly blessed. 

May God bless you and your family this coming year and always.

We will keep you posted.

A Merry Christmas

12.16.12:  5:45 PM

It's has been so long since I last posted. 

We are pretty sure that Davis's counts have stabilized. His oncologist cut his daily chemo in half, and he some of his medications were changed. Chemo builds up in the system over time, and Davis's body may be too weak to sustain the dose he was given.  As his counts continue to build, they will increase the chemo.  The idea is to give him as much chemo as his body will tolerate. 

Life is blurring by. Davis and Annakate just completed another testing round in Taekwondo. Davis performed beautifully at his piano recital last weekend. Annakate did a wonderful job in her school Christmas program.  All of these were things that I missed because I was sick. 

A couple of weeks ago, I came down with bronchitis. The "poison ivy" soon followed. The doctor - not my normal physician - placed me on antibiotics and steroids. A follow up with my doctor revealed that it wasn't poison ivy, but shingles. Shingles can be deadly to Davis, and as you can imagine, I was beside myself. Thankfully, I hadn't been around Davis much because of the exposure to bronchitis. He was immediately put on an anti-viral as a preventative measure, and he moved in with my in-laws. I have been to the doctor three times now and am on a smorgasbord of medication, and it appears that I am on the road to recovery. I am healing very quickly. I know many suffer from shingles for great lengths of time. I am praying that it dries up quickly, as I do not have the time to be sick.  Besides, I miss my children so very badly. 

Today, I attended the Christmas musical at our church.  Davis was Gabriel and Annakate was a star. I think she was a star.  Anyway, it was wonderful. I find such joy in watching my children develop their talents, especially when it is for the Lord.

 

 

 

Davis didn't attend school on Thursday or Friday because sickness has hit his little school. We love that the teachers and nurse are so well attuned to Davis's risks. They are kind enough to advise us as to when school isn't "safe" for Davis to attend. Davis has been wearing a mask for the last couple of weeks to help protect him from all of the viruses flying around, but a mask only does so much. God has really had his hand on Davis.  With all of the sickness in abundance and my own sickness here at home, he has gone unscathed. It can't be luck or antibacterial hand soap; it has to be God. 

Davis has a band concert on Tuesday evening. He is super excited about it. He loves band. And on Friday, Davis has chemo in St. Louis. It should be an easy day of chemo. Just one five-minute port push.  Five hours in the car for five minutes in the clinic. We aren't complaining though. We love the easy chemo days.

Christmas around here is busy. We really partake in the hustle and bustle.  I think we will celebrate Christmas six different times over the week.  We love it that way. Nothing is better than celebrating and spending time with family.

As if Christmas isn't merry enough, we will finally be fulfilling Davis's Make-A-Wish. We are so excited!  If you remember, we were supposed to leave for Hawaii back in February, but Davis became febrile and neutropenic and was hospitalized two days before we were set to leave. That led to a two week hospital stay.  The trip had to be cancelled. Well, here we are again. You know, I think it was kind of a blessing that Davis's original trip was postponed, because now his body is stronger and his immune system is stronger and he has more energy. He will be able to enjoy - really enjoy - Hawaii in ways that he wouldn't have had back in February. 

I can't help to think from time to time and be caught up in where we were a year ago. If you would have told me we would be here back then, I would have never believed you. When we were going through the worst of it, I couldn't think beyond the day. We lived from appointment to appointment. Our lives were masks, blood counts, Germ-X, thermometers, syringes, disinfectants, needles - tons of needles. Now, in many ways, that seemed like so long ago. But what seems like yesterday are the words of encouragement, the friends being friends, the school that embraced a sick child, the complete strangers sending cards and more. I will never forget the kindness and love shown to us. We weren't (and still aren't) anything special . .  an ordinary family fighting extraordinary odds. But so many loved us, lifted us up, and pulled us along. I am forever grateful and forever indebted. You have no idea have you have changed us for the better. I will never in all my days be able to properly pay it forward.

When I heard the song, "Bigger than the Odds", I completely identified with parts of it. I think anyone who has been so close to broken can identify with the song, so I thought I would share. Just click on the link.

"Bigger Than the Odds" by Matt Vollmer

I ask for prayer. I haven't been well and need to be for my family. Please pray that Davis stays healthy and strong. We have much to look forward to this month. Most importantly, pray for those precious little darlings who don't get to come home for Christmas - those who will spend their Christmases in hospital gowns. And pray for Cory's family and those families alike, who will celebrate Christmas without their babies for the first time, for their babies are now in heaven.

Love from our family to yours. Merry Christmas.

We will keep you posted.

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.