February Chemo - Two Trips

2/24/2013:  10:17 PM

Oh my goodness! Where is the time going?  It seems that we are caught up in the routine of life now more than ever before. Let's catch up . . .

Annakate is finally healthy again. It seemed like she was sick forever. 

On Valentine's Day, I took Davis down to St. Louis for his monthly port chemotherapy and a lumbar puncture/spinal of Methotrexate (every three months). He had a bit of a cough and a runny nose, so I wasn't surprised when his oxygen level tested below normal. The doctor checked his lungs, and they appeared clear. I explained that he had been experiencing some arm and leg pain and headaches, which we had contributed to his new exercise system and his apparent cold.  It was then decided that he needed a blood-ox test (a test used to test the amount of oxygen being carried in his red blood cells). The test revealed that he had elevated methemoglobin in his blood.  It is my understanding that methemoglobin is carried in the hemoglobin and does not released oxygen properly into the bloodstream.  Due to his methemoglobinemia (quite a fascinating word) and his cold symptoms, his spinal was cancelled. The anesthesiologists wouldn't sedate him. The medication he takes to prevent lung infections, Dapsone, was the cause of his anemia, so he was taken off of it. He has now been switched back to the Pentamadine breathing treatments to ward off lung infections.

 

 

Davis's cold got the better of him by Saturday, and he spiked a fever.  We ended up in the local ER.  The SBLHC ER takes such great care of us when we are there.  Many of the doctors have children Davis and Annakate's ages, and they are so personable.  Anyway, the doc ordered a CBC and blood cultures to be drawn through Davis's port. The results came back, and no port infection seemed to be evident. Since his ANC was so high, he was given a bag of antiobiotics through his port, and we were sent home. Pretty routine. By Sunday evening, he was feeling much better.

 



 

 

Kyle and Davis headed down to St. Louis on Thursday to beat the storm. Davis had to be at his clinic appointment early in the morning on Friday. The nurse in clinic tested his blood-ox level again, and since it was on the high side of normal, his lumbar puncture was a go. The APC (Ambulatory Procedure Center) was able to work Davis in early, so they work back on the road in no time.

Davis's chemotherapy was increased because his counts have remained consistently high. The doctors wish for his ANC (immune system) to hover around 1000 (healthy kids run 1500 or above), and his tested over 4000 for this month. Although I don't want anything interfering with his treatment plan, I am grateful for the high counts during the flu season.

Kyle spoke to Davis's oncologist about switching over to pills for all of Davis's medication. Currently, with the exception of one medication, all of his meds are liquids or liquid compounds. Some are refrigerated.  A year ago, I couldn't even fathom pills as an option for treatment because, if you remember, Davis could/would not swallow pills.  Goodness, there has been so much change over a year. I am tickled that he can swallow pills now. 

Another notable . . . February 27, 2012 will mark the one-year anniversary of Davis's last hospital stay.  Can you believe it?  When you spend so much time at a place - a second home of sorts - it is hard to imagine anything beyond it, especially in cancer land when life is focused on the day to day. Davis reminded me a couple of weeks ago about the so-called anniversary.  He actually said that he missed the hospital.  I am sure if he was there, he wouldn't.  But I do understand what he means. Everything was certain in the hospital. . . the time for medicine . . .the meals . . . the security of knowing you were being carefully looked after. . . the rotation of the nurses . . . the activities . . .the other children. But with all that certainty, I am more content with being at home.

Davis has started working with a trainer to build some muscle and endurance. He lost so much muscle mass last year. He struggles to have the stamina that other sixth grade boys have. He was ecstatic about starting, but that enthusiasm has wained a bit. Working out is hard work. I am sure he will be thankful for his effort in the long run. 

We continue to keep on keeping.  We never forget how truly blessed we are.  I am amazed at how healthy Davis has remained despite the treatments and sickness that has run amok. I pray over him every night that God keeps a hand of protection on him, and God continues to deliver. Thank you to all of you who pray for our family. It means so much to us. 

We will keep you posted.

One Rough Week for One Little Girl

1/30/13: 11:00 PM

Poor Annakate. She can't seem to catch much of a break as of late. A couple of weekends ago, she started complaining about her ear. By Monday (Martin Luther King Jr Day), it had nearly swollen shut. A trip to the doctor concluded that she had a very nasty ear infection. So the antibiotics began. Probably not the way she wished to spend her day off from school.

Tuesday . . . still sick.

Wednesday . . . better. The antibiotics were starting to work, and she was feeling like her old self again.  She went to school. She had her teeth cleaned. She went to church. It was there while playing a game (actually racing to a seat) in class that she tripped over another child's foot and faceplanted into a wooden arm rest on a couch. Off to the ER we went.

 

My poor little thing bit through her lip and lacerated the inside of her right cheek. Dr. Stout was kind enough to stitch her up and send her home with a pretty numb lip. I'm not going to lie, it was sort of nice to be in the ER for the things that you are supposed to be in the ER for. It was the type of trip I had always imagined parents everywhere making.  One of those trips due to the accidents of childhood. Don't get me wrong, I don't want my children to have to make ER visits, but if they do, I want it to be for reasons like this not because of bacterial infections or blood infections often associated with cancer.

Thursday was rough.

 

Friday was rough. Finally, I took Annakate back to the doctor. We were due for a follow-up anyway. Annakate hadn't consumed any food or water (except for a couple of ounces) for a day and a half. She refused to take her antibiotic or Tylenol. She wouldn't drink through a straw because she wouldn't close her lips around it. She was super miserable. The nurse gave her a stern talk about the importance of drinking and the concerns of dehydration. The doctor put her on a different antibiotic that she only had to take once a day and for only a few days, and he also gave her some mouth-numbing mouth wash.

Saturday was rough.

Sunday was better. She woke up feeling pretty great. She managed to eat and eat and drink. She went to church. She was on the up and up.

Due to the severe storm and power outage in Ashmore, Annakate didn't have school today. Well, what would you know?  She woke up with a fever and a sore throat. I gave her a couple of Tylenol, and the fever did subside and she resumed normal activity, but my goodness . . . .Really? 

Just pray with us that she gets better and stays better. I am hoping that we can put the last couple of weeks behind us.

Davis has been doing great. He has been complaining a bit of leg pain, and I know that worries him. He has also been sweating a lot a night, and I think that worries him too.  I think he just uses way too many covers. He asked me tonight when I was tucking him in, "Mom, do you think I am relapsing?"  I reassured him that he isn't. I told him that we don't see enough of the signs. I told him he could talk to the doctor about it in a couple of weeks at his next appointment. She can check him out. I think that the fear of relapse will always weigh on his mind to some degree. He is a thinker and a worrier, and I think it is hard for him just to put his total trust in God. He's human, and he's eleven. And he has had to grow up and carry the burdens that most adults struggle to do gracefully. I can't even imagine the weight that all of this places on him. 

I am so thankful that God has had His hand on Davis. So far, he has managed to be fever-free for months now. With all of the sickness around and even in our own home at times, I am amazed that Davis remains so healthy. I don't doubt that it is a God thing.

Please pray for both my babies. Annakate for her health, and Davis for peace of mind. I know he is worried about relapse. I think he thinks that being this healthy for so long is too good to be true. It seems like he is holding his breath or waiting for the other shoe to drop or something. Davis has also been very grouchy and combative lately.  He hasn't been getting adequate sleep, which contributes to his bad attitude, but he's old enough to exert self-control. I definitely pray for an end to this sour attitude.

We hope this finds you and your family happy and healthy. May God richly bless you always.

We will keep you posted.

Playing Catch-Up

1.20.13:  7:00 PM

I promised Hawaii stories. . . Hawaii was beautiful.  Davis's wish was to go to Pearl Harbor. It was wonderful. The history was amazing. There was much better explained through the museums than any textbook I have read. Davis was treated like royalty. He was able to pick out any souvenir that he wanted from the store. Herb, a World War II veteran, was our tour guide. We received front row treatment in the theater, and we were the first to get on and off the water shuttle to the Arizona Memorial. There was such a peaceful reverence on the memorial. Terribly saddening.

 

 

After spending quite a bit of time going through the museums, we toured the Arizona Memorial, we toured the USS Missouri,the retired battleship.  Davis had seen the movie Battleship and thought it would be cool to tour it. Personally, I didn't find the ship all that interesting, but the history was amazing. The Missouri (The Mighty Mo) was the ship that Japan surrendered on in World War II.

 

We snorkeled. Well, I snorkeled. The weather was a bit ominous. It was raining on and off and the gusty winds made the water incredibly choppy. Kyle, who gets major motion sickness, decided it was best if he stay on land. So Davis, Annakate, and I headed out to sea. The first stop was to view the green sea turtles. Davis did a great job. He kept his head under for so long looking around and taking pictures that I kept tapping him on the shoulder in an effort to keep him with the group. We were called in after twenty minutes or so. I couldn't understand why were were being rushed, and then the guide, Steve, explained. There were Alaskan Humpback whales nearby. It is the accepted Hawaiian water policy that people are out of the water when whales are nearby. Our catamaran ran parallel to the two giants for some time. One turned south and swam right under our boat!  The water was a little over 40 feet deep, so the whale was incredibly visible. It was definitely a highlight of the snorkeling trip!  We eventually returned to snorkeling. Well, I returned to snorkeling. Davis was too cold to get back in the water despite the wetsuit, and Annakate couldn't find the courage to get into the water. She is afraid of fish - even afraid to look at fish. She remained on the boat with Steve. 

 

 

We swam with dolphins one day. It was pretty neat. The interaction was limited, but it was still quite an experience. We even swam with a walphin. It is a half-killer whale, half-dolphin creature.

 

 

On our days when there was not a tour scheduled, we found plenty to do. We climbed to the top of Diamond Head, a volcanic cone. Boy was it a hike!  Kyle and Davis sprinted ahead, and Annakate, Marylee (Kyle's mom) and I stayed together. We eventually reached this 100-step steep staircase. Marylee waited at the bottom and Annakate yelled to me from twenty steps in, "Come on, Mom!" I had no choice but to follow her. Oh my goodness, talk about a burn. Those 100 steps were about 40 too many. But the hike was worth the work. The view was amazing.

We did a lot of other wonderful things too. We went to a luau. We meandered through markets. We ate and ate. I think we ate ice cream every single day. We managed to spend every day that we didn't have something planned at Waikiki beach. It was amazing. Davis and Annakate are such beach babies. They find all kinds of things to do: build sand castles, collect rocks, look for shark teeth, paddle board, tube, swim, jump waves, etc.

 

 

 

I can't thank Make-A-Wish enough. We made such fantastic memories on this trip. His ANC (immune system) was over 4000!  The doctors are wanting him to hover around 1000.  All of his other counts looked good. The reason why his ANC is so high is because a couple of months ago, his team reduced his chemo by half. He had spent several weeks with an ANC below 500 making him neutropenic. He even had transfusions in October. The culprit, they believed, was that the chemo had built up in his system and his body couldn't keep up. Now that his body has made a count recovery, they will slowly start increasing his chemo meds one at a time.

His check-up went well. He continues to keep on keeping on.  He even managed to have a slumber party after his chemo on Friday. He just loves spending time with his friends. They are quite a hoot when they are all together.

We are back into a routine and busy as usual. Absolutely no complaints. We have been being very cautious with germs. The flu is rampant. Annakate fell ill this weekend. I am not sure if it is cold or flu, but it appears to be more cold-like than flu-like (no aching). Nevertheless, she has been quarantined to our bedroom and bathroom allowing Davis free reign of the rest of the house. This has been our procedure for the last year and a half.  If the illness gets serious (stomach flu, shingles, etc), we send Davis to Grandma and Grandpa's, but a cold keeps him at home with us. Kyle usually tends to the healthy child and I usually tend to the sick child. Some may see that as unfair, but I don't think so. If my babies are sick, I want to be there with them. Besides, since I work with children every day, I figure I have the stronger immune system.  I am glad we have a system that works. 

We aren't due to head back to Children's for another month. I thank God every day for the hand of protection he puts on my children. And even though the ringing of the bell is so far away, there is much comfort in the progress we have made. Please continue to pray for Davis's complete recovery and healing. I don't ever want to indulge in a false sense of security just because he looks well, and I don't want to ever forget about how difficult the journey has been. We cannot appreciate how far we have come or how much God has blessed us if we forget.

We will keep you posted.

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.