A Major Accomplishment

Well, the boys completed another year of school!  I’m so amazed that the way the year has gone, the boys were able to remain faithful in their responsibilities at school and finish with good grades.  I’m very proud of them and amazed at how well they have done despite the challenges this year.  Laura and I are so grateful for the boys’ teachers and the rest of our spiritual family at the Oaks Academy.  Through your emotional support, financial support and many prayers, notes and meals, you’ve helped sustain us through very trying days.  My eyes were full of tears all morning long as I went to Micah’s and Noah’s classrooms for their year-end celebrations and during the general assembly as we sang praise songs ending the year with gratitude to God.

As I reflect on how so many at the Oaks have loved us, I also think of how much so many other people have supported us through our church families at Redeemer and the Crossing.  Parents from Indy Sabre and the Lawrence Soccer Club have also been of such help and encouragement in so many ways.  Many friends and family from the rest of the U.S. and from the other side of the world (i.e. Thailand, Switzerland, Malaysia) have blessed us with faithful prayers and gifts beyond belief.  Our hearts are very full and we love and appreciate you all so much.

Love,

Brad, for the Grammer family

One Day At A Time

Laura’s been home for almost a week now.  Other than feeling really tired and having bouts of nausea, she is doing fairly well.  She hasn’t contracted a fever yet and sleeps much better at home than at the hospital.  She even went to Noah’s soccer game last week.  At the far end of the field, you could see Laura sitting there with her mask on with her mom who brought her.  So we’ve been encouraged to have her home and see her feeling better than she has in a long while.

As you may have already been informed, Laura will start experiencing symptoms of the graft vs. host disease at the end of June.  So we are in a holding pattern until then.  Laura has appointments with the doctor today and Friday and on either day she’ll have a bone marrow biopsy to see if the marrow is fully her donor’s.  That produces a certain amount of pain but it’s not as overwhelming since Laura’s been through it before.

I’m feeling more sane this past week.  The boys seem to be doing better as well.  They are getting ready to go on some summer trips right after school is out.  We are so grateful for family and friends who are able to provide them with some fun this summer.  Laura and I will be staying home and just passing time while she continues to rest.  Maybe we’ll have another Indianapolis Summer Film Festival like we’ve had before!

Thank you as always for your faithful love and support.  I’m tired right now and don’t have much to say but wanted to give you a brief update on what’s going on.

Love,

Brad

“I’m Home!”

At least for now, I’m enjoying being at home with my family and in my own bed.  Mostly what I’m doing is lounging around due to a complete lack of energy.  Ten days in a ten foot by ten foot room will sap all of your strength.  The effects of chemo are behind me and I am just waiting for the donor’s marrow to fully kick in.  My blood cell counts are going up slowly but as the doctor says the donor’s white cells are “stupid.”   It will take a while for them to figure out how to fight off infection in my body.  Next week I will be getting another bone marrow biopsy to make sure that the marrow is all from the donor and none of mine is left.

I’m having problems eating because nothing tastes very good and it is also hard for me to keep all of my pills down.  I have to take about twenty a day.   Hopefully my appetite will return soon and I will be  throwing back pills like a pro.   The doctor has said that I will have days where I feel back to normal  and days where I have no energy.   These will be interspersed with no rhyme or reason.    Until day 60 , I’m still not allowed to go into crowds, be outside without a mask,  and must stay on my dietary restrictions.   After day 60, I am looking forward to fresh fruits and vegetables.  Yay for salads!  What is a hamburger without lettuce, tomato, and onion?

Brad already explained the new and strange technique of blood letting that they’re using at St. Francis.  After the initial shock of seeing my blood everywhere, I recovered and looked at it as another strange story in this crazy adventure.  The best part about all of this has been all the friends I’ve gotten to see and the encouragement and prayers that have helped lift our family through this time.

Love,

Laura

Day +22  (over a 1/3 of the way)

Laura’s Home

Laura came home yesterday evening from the hospital after being there for 10 days.  She was so happy to return home and we were so happy to have her back.  Just prior to being released, Laura had a crazy experience.  Every Tuesday radiology comes to her room and takes x-rays since she’s not allowed to leave her room while she is at the hospital.  After they took the x-rays, they left and Laura fell asleep for about half an hour.  Apparently when the radiology department moved the x-ray machine out, they accidentally clipped her IV cord.  The fluid that was supposed to be going into her body was pouring out on the floor.  In addition, her own blood was also going on the floor since nothing was going in the IV’s.  Laura woke up to find fluid and blood all over the floor which shook her up.

Before she had the x-rays, they had taken her blood sample and noticed her blood counts had dropped just a little.  After this accident, Laura was naturally concerned about her blood counts now so the doctor ordered to have her blood tested again.  Her counts actually went up which was amazing.  So despite all the craziness she was allowed to come home.

Thank you to many of you who have called and e-mailed with encouraging words.  We feel that many care for us and love us.  We are hanging in there as best as we know how.  We know God is with us, is for us and will never leave us nor forsake us.  It’s just a tough road sometimes and being physically and emotionally exhausted can easily lead to discouragement and despair.  Since I blogged about dark days though I have felt renewed and re-energized.  Laura still feels down but this is normal for going through all of the adjustments in her body.  Until her body is functioning more properly she will face this so pray for endurance as her body goes through the normal progression.

Again, thank you for all of your love and support.  We couldn’t keep going on without you.

Love,

Brad

More Dark Days

We’re so grateful that so many people have helped us out taking care of the house, running errands, watching the boys, etc, etc, etc.  One thing that’s so difficult to find help for is the emotional weight that is carried around.  This week I feel like the entire family has hit a wall.  I think we’ve all reached our limits.  I really don’t think we can do this anymore.  We are just so worn out.  Micah had the worst week he’s had ever and I fear for him as he is becoming violent in his talk and behavior.  Noah is more and more withdrawn and hard to reach.  I’m emotionally shot and just feel like I can’t get up each day anymore.  I don’t know how to ask for help with this part of our lives.

Laura is feeling better with her sore throat but is having a horrible time keeping food down.  She threw up both her breakfast and dinner.  The doctor said this is normal and a continuation of the result of chemo.  It’s been very discouraging to Laura and she is sinking down herself.  I don’t even know what to ask for because cleaning or cooking won’t take the emotional pain away.  I guess we need your prayers and hugs and assurance that you will see us through this.  I can’t even imagine getting through tomorrow but I’ve been only taking one day at a time.  I’m down to taking one hour at a time now.  Please keep praying.  Thank you.

Love,

Brad

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