Day #14

I just spoke with Laura this morning and her white blood cells are at 0.36 which is like 360.  That’s up from 0.16 four days ago.  Her hemoglobin (red blood cells) and platelettes also stayed the same which is also good.  If they drop, it doesn’t mean anything but the fact that they are going up and staying the same are really good.  So that’s encouraging.  Laura’s spirits have been pretty good lately as well so keep praying for encouragement and a sense of peace through this time.

I’d like to share about a situation that occurred a few days ago.  As I was sharing with someone updates with Laura and I, I was asked the question if I get out and exercise.  My understanding was that initially this question was asked out of concern wondering if I’m able to relieve stress this way.  I stated that I really wanted to but haven’t been able to have the time.  Then with a face of confusion was asked, “Why not?”  At that moment, I felt as if I was on the defensive having to justify why I wasn’t able to have time to exercise.  I actually started explaining details of my schedule but sensed this is just not right.

Then I stated that finding time to exercise and exercising itself has always been stress inducing because it’s never been relaxing for me.  I’ve always felt I had to do it out of duty and obligation to my health.  The response was, “I’ve never met anyone like that.  Why does exercise help me so much?”  Maybe I was being overly sensitive but I really felt insulted by the responses.  My response was simply, “Because I’m different.  Not everyone finds relief from stress exercising.  I have friends who find great relief from exercise but not me.”  The look of confusion remained but I couldn’t help feeling insulted.  I know I’ve gained weight through this experience.  I’ve eaten more and been more sedentary than I have been in years.

I guess I share all of this to explain ways that we can be hurtful without meaning to.  One of the ways we can be hurtful is by simply not being willing to understand and accept another person’s way of thinking or experience.  I find that many Christians have been guilty of this very thing; not accepting people for being different.

I’ve been going to counseling to keep up with everything in my heart and my family’s hearts through this past six months, and my counselor shared one time that most people are uncomfortable with different.  I’ve found this to be true consistently, especially as I observe people’s reactions and behaviors to one another.  I’m amazed at how much we don’t seek to truly understand one another when we’re very different.  From my understanding of the Bible, there are way more verses on unity than there are with correct theology or thinking.  I think that should say something to us about what God cares about.

I’ve had time to process this interaction and understand that this individual often has a difficult time understanding people who are different.  Because of that, I have compassion for this individual and hope that there can be growth in seeking to understand and know others better.  My encouragement is for all of us to grow in truly knowing one another and valuing and appreciating each other.  So many people who have loved us through this time period come from very different backgrounds.  All of you think differently, look differently, live differently and I so value and appreciate each one of you.  Thank you for adding so much beauty to Laura’s and my life by your uniqueness.  We love each one of you.

Love,

Brad

Update on Laura

I took the car in this morning to be repaired for a number of issues.  Since I didn’t have transportation I wasn’t able to see Laura until after 5pm.  So I picked up the car with the boys and we drove over to the hospital after picking up some dinner.  Laura seemed in pretty good spirits, despite the fact that she only slept two hours last night.  The nurse she had last night was apparently a resource nurse who had never worked on the bone marrow center floor before and she messed up Laura’s IV wires so the IV machine was going off all night long.  One of the regular nurses came in the morning and fixed the wires.  After that, Laura didn’t hear any sounds for the rest of the day.  She finally got to sleep at 5am and slept until 7am.  Despite this, she was in good spirits when we visited tonight.  She specifically said to tell everyone she wasn’t feeling as down anymore so thank you for the many prayers.

Her white blood cell count was 200.  The doctor thinks this is legit and not a ‘fakeout’ and thought there was a good chance Laura could be going home by Friday.  We know things can change any minute but we are hoping the white blood cells keep going up for the rest of the week.  Her sore throat will finally be gone once the counts go up.

One interesting thing Laura shared tonight.  She saw an advertisement for a countdown to the Olympics.  She realized at one point that the countdown was very interesting and matched something for her.  The 100 day mark that is significant for Laura falls exactly on the same day as the first day of the Olympics.  Laura has really been looking forward to the Olympics.  We kind of see this as symbolic of getting through a significant part of her healing, kind of triumphant in celebrating her 100 days.  So that was a fun thing in the midst of it all.

Love,

Brad

Ugh Part 3

Laura was admitted to the hospital this morning.  She’s not in crisis yet which is good.  Her throat hurts so bad that she isn’t swallowing hardly anything.  She lost 3 pounds since yesterday morning because she ate nothing.  Even drinking a liquid is too hard for her.  They thought she was getting too dehydrated. She couldn’t also take her pills which is really important since she takes 20 a day.  So they admitted her to give her fluids, platelettes and medication through IV.

Fortunately we were able to have 15 minutes of a Mother’s Day as a family before we went to the hospital.  On the way home I got a flat tire and ended up changing my tire in the cold and rain.  Fortunately my neighbor was around to help me finish the job.  I was just frozen at one point staring at the tire and had to kind of smack my face.  I’m hitting a wall again.  It doesn’t take much these days.  I think we’re all worn out physically and emotionally and any task seems gargantuan.

The doctor said Laura’s blood counts are supposed to go up by the end of the week so we’re hoping she only has to be in for a week.  Pray that she would feel God’s presence in a special way while she’s in the hospital.  Pray for strength for me and the boys.  This weekend has been rough again for all of us.  Thank you as always for all of your support.

Love,

Brad

A Day in the Life of . . . Part 2

We just arrived home from the hospital.  A friend took Noah to soccer today and I’m waiting for Micah to be picked up for fencing.  I thought I would give you a view of a normal day for me.  Perhaps I’ll do one tomorrow for the boys.

Each day I start around 6:30am, even on weekend days.  As long as Laura is home, she has to go to the hospital every single day.  It’s usually in the morning as well so I need to get up early to prep for the day.  During school days, I supervise the boys and sometimes fix them breakfast.  I make sure they have folders and planners signed and that they remember any special issues of the day.  Micah needs an extra boot to get out of bed so he takes a little more work in the morning.

I usually check on Laura between 7-8am.  Each morning brings a different feeling and mood so I check on her to see what she needs.  Sometimes she’s doing fairly well and gets up on her own.  Some mornings she is not doing so well and needs some time to cry and be encouraged before starting the day.  I’ll run downstairs a couple of times and get some drink or food for her on those days.

After dropping the boys off at school, I run back home on days I watch Laura.  We get ready to go to the hospital, usually between 9-10am.  As Laura mentioned she may be at the hospital anywhere from 1-6 hours.  Once I find out how long of a day it is, I schedule what needs to happen with the boys and myself.  On days I’m with Laura I usually stay the whole time with her, running to get lunch for her and attending to whatever else needs to be done.  When someone else watches Laura during the day, I go to work.  Sometimes I have to adjust my days because the person who’s scheduled to watch Laura gets sick or has some other glitch.  I had that happen two times this past week.

I try to fit most of my work in between 10am-3pm during the weekdays.  After 3pm I either pick up the boys from school or arrive at home while someone else brings them home.  From 3-5pm I check in with the boys about homework, talk about their days and attend to Laura once again.  Around 4:30pm on days where meals are not brought, I start to cook dinner.  I cook different meals for the boys and myself, and Laura.  She can’t usually eat the same as us when she has things like a really sore throat right now.

After dinner, I do any of the following: go back to work (used to be both Tuesday and Wednesday nights but now is only Wednesday), or do household chores (laundry alone usually takes 3 days), do finances, spend time with the boys, spend time with Laura, set up schedules for the next day (arranging doctors’ appointments for the boys, arranging house and car repairs, catching up with my family (my father has his own challenges caring for my mom who has Lewy-Body disease) and friends, as well as any other tasks.  On Monday nights I take Noah to soccer practice and I pick up Micah from fencing sometimes on Thursday nights.

Weekends are usually busy with Noah have soccer games on both Saturdays and Sundays.  Micah has fencing on Saturdays.  If I can’t go to the boys’ activities, I need to get someone else to take them.  If I can go, I need to find someone to watch Laura.  Laura can never be left alone as long as she is home.  Whoever watches her needs to watch for the following possibly developing in her as a result of the bone marrow transplant:  temperature greater than 101 degrees, shaking chills, severe shortness of breath, chest pain, loss of consciousness or fainting, seizures, severe and sudden headache, sudden confusion, inability to speak, severe weakness and loss of feeling, excessive bleeding, inability to wake up or any other life threatening symptoms.  Less severe symptoms include diarrhea, mouth and throat sores (which she has severe throat sores right now), skin rashes, normal weakness, normal headache, and stomach upset.

It’s a challenge each day to figure out how much to stay present with Laura and not be hovering but yet not also be too distant.  It’s challenging to figure out the balance.  The challenges also come when the boys have bad days and making sure I attend to their feelings and needs but not neglect Laura but also not neglect them in caring for Laura.  Sometimes we all get neglected and we may feel some bruising from that.

What’s amazing is that friends have helped out with cleaning the house, providing transportation for the boys’ activities, watching the boys when I can’t, running other errands and I still find my schedule full.  By the time I reach 10pm I’m usually so exhausted I can’t think.  God has been very kind to me providing ample support and encouragement.  I’ve been grateful that since Laura was diagnosed with leukemia on November 13, I haven’t contracted a cold or the flu.  This is still possible with the weather yo-yoing but so far I’ve been well and I’ve been very grateful for this.  Even when cleaning up vomit and giving out medicine for colds and flu, I haven’t become sick.  So thank you to anyone praying for health for me.  It’s been great this winter for me personally health-wise.  Whenever any of us is sick in the house, we are not allowed to be in the same room with Laura.  That’s one of the pains we’ve experienced with leukemia is that it is very isolating.  Physical touch is diminished if not eliminated at times and physical distance in our own home is kept so that’s part of the emotional weight we feel going through all of this.

Well I better stop writing this novel and give you a chance to breathe.  I’ll put something in the blog tomorrow about the boys.  Laura is still home.  She was at the hospital 3 hours today getting potassium.  She is very tired and her throat is bothering her tremendously.  Right now she’s on a diet of milk shakes, jello, cold liquids and anything else that’s not warm and hard to swallow.  We’re hoping she gets some relief soon and can whether this pain.  Thanks so much for your faithful prayers and support.

Love,

Brad

A Day in the Life of . . .

Laura and I thought we would paint a picture of what a typical day looks like for us.  Many of you have asked and weren’t sure what a day looks like so here it is.  By the way, this entry is in quotes reflecting the fact that Laura dictated this to me.

“Thank you to all of you for being patient with me not blogging and answering e-mails or phone calls.  I’ve been so exhausted it’s been impossible for me to sit up and respond.  One of the most difficult parts of recovery is the seemingly endlessness of sameness each day.  However, my doctor reassures me that it is not like the movie ‘Groundhogs Day’ where you are stuck in the same day over and over.

I go to the hospital every day as I do this outpatient.  I usually go in the morning.  Someone has to drive me each day.  The first thing that takes place when I arrive is that I get my blood drawn.  They check the counts to see if I need blood and/or platelettes that day.  The doctor comes in after the results of the blood test are received (usually within 15 minutes or less).  He asks a multitude of questions about all kinds of symptoms that may be developing.  This includes whether I have headaches, stomach-aches, bowel problems, sore throat and mouth, vision problems, breathing problems, skin rashes, swelling in the body, body functions, bleeding issues, and the list goes on.  He does a quick exam and then decides if I receive any treatment that day.

I can be at the hospital anywhere from 1 hour to 6 hours or more.  I won’t know until that day how long I’ll be staying there so I come armed with a bag full of things to do IF I have any energy.  Sometimes I just sit and sleep while I receive treatments.

After I get out of the hospital and arrive at home, I usually nap on the couch because I’ve expended all of my energy just going to and from the hospital.  I try to sit up for dinner on the couch but I haven’t been eating much lately because my throat is so sore from the sores developed from the chemo.  I take 20 pills spreading out over four times each day.  Each day is just waiting; waiting for the bone marrow to kick in and start making white blood cells and enabling my body to start producing blood cells of my own.  The doctor says it will be at least another week before this starts happening.

Throughout the day, I take my temperature endlessly waiting to see if a fever develops.  My temperature goes up and down throughout each day.  In the late afternoon/early evening, my temperature usually goes up.  It’s been going up over 100 for the past few days.  I sit and wait to see if I need to call the doctor.  So far my temperature has dropped to normal during the night and I haven’t had to be admitted to the hospital.

I can feel people are supporting us.  Right now, I don’t feel the loneliness and discouragement I did last week.  I’m also coming to grips more with what the process of recovery looks like.  Thank you so much for your faithful prayers, e-mails, phone calls, gifts and moral support.”

Tomorrow I’ll give you an idea from my (Brad) perspective on what a normal day looks like for me.  Thanks for indulging us and reading about our lives.  We know you love us and care for us.

Love,

Brad

Day #6

The last couple of days have been difficult for Laura physically.  She’s still battling diarrhea and the doctor’s not sure why she has so much problems with it.  It’s normal but not for the amount Laura is experiencing.  So we could use prayers about this issue.  Her white blood cells are down to zero now so she is very vulnerable to infection.  Most likely she’ll be going to the hospital this week but we hope she can stay home as much as possible.

Emotionally Laura and I are both worn out.  I think I hit my angry phase on Sunday.  It took everything in me to just go to church and then while I was there I felt like screaming.  Fortunately no one experienced the brunt of my wrath.  I left church and spent time talking with a couple of friends which helped tremendously.  Laura wakes up crying saying she can’t do it.  I know how that feels.  I feel the same way these days.  With both of us going through constant pain, uncertainty, unpredictability, surprises with treatments, etc, etc, etc for six months, we’re just all worn out from always fighting, always trying to have a stiff upper lip.  As my friends reminded me on Sunday night, it’s all right not to have a stiff upper lip.

I have thought about this recently.  I know people don’t expect us to always have a good attitude but I wonder if this is really true.  When I do have a moment of expressing frustrations, it’s hard to get the blank stares as if no one really knows what to say.  Sometimes no one calls us for days and I wonder if this is a sign that it’s expected of us to handle this well.  I’m not sharing this to guilt-trip anyone but just to be honest.  Part of my desire is to share this so you understand better what goes on, to be a teaching moment.  I think it can be better communicated that Laura and I aren’t expected to handle this perfectly by calling or emailing and just saying we are on your minds and that you’ll listen for the moment.

Many of you do ask when I bump into you personally but when I’m out of commission for a while because I’m spending time at the hospital or more time at home, the silence can be painful.  Laura often doesn’t notice because she’s feeling too icky to know what’s going on.  I guess I feel it more because I carry the load emotionally for the family right now.  I know many of you want to say something but aren’t sure what to say.  At that moment, you can ask me and I’ll teach you about me and Laura and what to say.  Sometimes I don’t know what to say myself and so I’ll share that.  I think it’s better to try to talk in awkwardness than to wallow in silence.  I don’t think it feels comfortable for either one of us to be silent.  Perhaps learning together how to talk through pain and difficult moments is a learning process and we can give each other grace going through it.

Having said all of that, so many of you have done wonderfully at loving through tangible ways of giving time and gifts.  We couldn’t make it this far without you.  We are just going through a difficult time emotionally and hugs and words would help during this time.

Love,

Brad

Day #3

Laura’s been battling feeling sick for the past 3 days.  For the last two days at the hospital, Laura has received fluids to keep from dehydrating.  She doesn’t eat hardly anything and hates to eat because it means she’ll have problems very soon afterwards.  I know this has been discouraging for her so please pray that this discontinues soon and that she would feel encouraged in the midst of things.  The doctor thinks there’s a 50/50 chance she’ll be in the hospital by the end of the weekend.  We know this is normal and routine but hope she can stay home longer.

Yesterday the Oaks gave teacher appreciation baskets to the teachers.  Laura’s was very encouraging and she is very grateful for all of the parents and students chipping in and making it a fun gift to brighten her day.  So all of those involved with this, a very big thank you!

Love,

Brad

Tough Day

Laura had a rough day today.  She did not feel good all day long.  She battled diarrhea and stomach cramps all night and most of today.  While she was at the hospital, the doctor said that she had a virus and this is what was causing the diarrhea.  She lost 7 pounds in one day from this so you know she’s been overwhelmed physically with it.  Please pray for peace for her body tonight so she can sleep and get the rest she needs.  Pray for encouragement for her as well.  We were talking about going through almost six months of not feeling good really wears down your spirit.  We both are feeling it and could use some boost emotionally.  Thank you so much to those who have responded to requests for needs and have immediately encouraged us.  Words can’t express how much this encourages me.  Love to all,

Brad

Day +1

Today is our first day with the bone marrow in Laura’s body.  Yesterday was such a moving experience for us.  We arrived at 11am but Laura did not start receiving the bone marrow until 3:30pm.  Pam was the woman who prepared the bone marrow.  She said it arrived in 5 bags which is amazing.  They usually don’t receive so much.  It has to thaw and then they process it since Laura’s blood type is different from the donor’s.  After they process five bags, they come up with a pint of marrow for Laura to receive.  She told us how GREAT the marrow was.  We were sitting there listening to Pam wondering how anyone could determine if marrow is ‘great’ or not.  We told her the donor was 38 years old and she said she thought he was much younger because the marrow looked so good.

Anyway, Laura started to receive it and we were sitting there feeling like something amazing is happening.  In light of all Laura is going through it’s such a small event.  It only lasted two hours and then we were out the door.  No fireworks, no fanfare, just a little bag quietly being given to Laura.  But we felt like a miracle was happening.  We both felt giddy inside and still was in awe of how this man could sacrifice himself for Laura.  We talked about how blood is so important for life to take place in us.  None of us can live without blood.  It’s essential for life.  It reminds us of how Jesus Christ shed blood for us.  His blood gives life to all and how essential it is for us to truly have life.  It is what saves us.  And He loved us while we hated Him, while we were His enemies.  He still died for us knowing that many would reject Him, despise Him and turn away.  So much filled our minds and our hearts as we sat there at that moment starting the bone marrow.  I wish you could have all been with us physically.  I know many of you responded saying you were praying, and we knew you were all present in spirit lifting us up.

Prior to Laura receiving the marrow, they do a countdown.  When she started chemo it was Day -7.  Yesterday was Day 0.  Now each day is Day +.  So this is the first day with bone marrow and that’s why I called this entry Day +1.

Laura just woke up and I’ve been spending the last half hour with her.  She has a lot of stomach and bowel pain so you could really pray that the pain could go away either by itself or by the doctors offering something to help.  Thank you so much!

Love,

Brad

Today’s the Day

Well today is the big day for Laura, and the rest of us.  We are going in the hospital at 11am and Laura will receive her bone marrow sometime from 12pm on.  We’re not sure of the exact time.  The doctor said it would take around 2 hours to receive the bone marrow and then Laura needs to stick around for another 2 hours as they monitor how she’s doing.  Your prayers would be greatly appreciated today.

Laura got up and said that today was her last day of having cancer.  That kind of threw me for a loop because it seems like the norm living with cancer now.  But I thought, “She’s right.  This could be the last day of her having cancer.”  Amazing to think this way but awesome also!  Thank you all for your faithfulness at supporting us in so many ways.  A couple of friends sent some checks this week and this helps out tremendously.  Thank you for your incredible generosity during very challenging times.  It really makes me think of those going through cancer who don’t have a good support system.  I don’t know how they do it.

Love,

Brad