A Good Week...With a Hanger

I know I'm a little behind on the blog update.  BUT we are having a good week and so I'm very busy with other random stuff that I can't normally get done.  So here is a bit of what has been going on the last week and a half. 

I want to start off with a few praises and things to be grateful for.  Last week I asked for prayers on Jonathan's hearing test, and for no infections.  This last week when Jonathan had his excessively low counts (Neutropenia), he did not develop any infections!  I think having the Neulasta shot on time helped, so that is something we are very grateful for.  We also had his hearing tests done again, and he did loose a small amount of hearing in the higher tones, but technically is still in the normal hearing range.  Also good!  We got to spend 5 days with my cousin Kelsey.  This sweet girl is in college and wanted to get up here to help before school started.  We are so grateful for our family and having so many people offer to help in so many ways.  It was so nice to have her here and for the first time in a while I was actually able to get to the gym every day.  Barre class and running a few miles every now and then really helps my stress level I think.

*I have to include this funny story about Jude and Kelsey, well just because if you know Jude this will make you giggle.  The first day Kelsey was here, I had taken Jax to school and went to the gym.  So Kelsey and Jude were getting acquainted.  They were playing in Jude's room and Jude was putting Kelsey down for her nap.  (Side note, Jude has a lock on his bedroom door turned around backwards so we can lock him in...safety reasons)  Anyway, Jude left Kelsey in bed and when he left he locked the door.  Kelsey quickly jumped up after hearing the lock and started yelling at him to unlock the door.  He continued to tell her "you go night night, I go play!"  Then eventually ran off giggling.  Luckily Kelsey was able to pop the lock from the other side.  I think Jude considers this his childcare initiation, and probably had this planned.

On Sunday afternoon we made our way over to Seattle to see Jonathan's surgeon Chappie.  We stayed with our friends Katie and Rob and I got to play with their daughter Addie for a night.  Our appointment was early Monday morning, and the doctor surprised us when he said he wanted to change the surgery date from October 16th to mid November.  He ordered all new scans to be done and was going to decide for sure on a date after analyzing the new scans.  OK... stick with me here, I'm going to try to explain the medical stuff the best I can.

Typical protocol for Osteosarcoma is 2 rounds of their specific chemo regiment.  These 2 rounds take 10 weeks to complete.  After those 10 weeks are completed you remove the tumor or cancer source through surgery.  Then you do another 3 or 4 rounds of that chemo regiment assuming the tumor was dying at the expected rate. 

So when we got home and began attempting to schedule new MRIs, CTs, and PET scans, our oncologist here explained that  we can not get another CT or PET scan yet.  Apparently these types of scans are so high in radiation you can not repeat them any sooner than every 12 weeks.  Right now, we are at week 8.  SOOO... the medical oncologist called the surgical oncologist and decided that they wanted to wait for these scans to be done to proceed with surgery.  So they are breaking standard protocol and doing another round and then will have scans done at week 12.  Unlike many other types of cancer, this type of cancer can not be checked through his blood levels and can only be measured through a PET scan.  How a PET scan works is that it measures the rate of absorption the tumor is taking in glucose.  The higher the number the bigger and more active the tumor is.  This type of tumor also may not shrink as it is dying, so an MRI isn't necessarily accurate to judge the death or the tumor because the size may not change.  If it is growing however, and MRI will tell us the chemo isn't working!

Once again I had to speak up and let the doctors know that this makes me uncomfortable.  I understand that we need the tumor to tell us if we are successfully killing all the other cancer cells floating around his body.  That's why just removing it isn't a good idea.  They have no other way to know if their chemo regiment is correct.  HOWEVER if it isn't working I don't want to wait another month to know that it was actually growing.  An MRI will tell us that much.  So the oncologist agreed to order the MRI and said he agreed with my thought process.  If it is bigger we will call the surgeon back and formulate a new plan.  If it is smaller or the same size, we do as he recommends and do another 5 weeks of chemo. 

I'm still a little confused as to how "standard protocol" for treating osteosarcoma doesn't meet the "standard requirements" of the PET scan?  We can't possibly be the first patient to encounter this problem.  Did someone miss ordering this test early on in the process?  So next time I meet with Dr. Raj, we may have a longer discussion on this.  But for now we get the MRI and see what it tell us.  It is very hard to just not want to get this thing out of his leg!  (Jon keeps asking me if I'll just take a meat cleaver to it)  So Please pray that this thing isn't growing and maybe we get lucky and see that it is actually getting smaller through an MRI.

We are excited to continue a few more days where Jonathan is feeling good.  The boys actually got him out in the hot tub this week, and he went and got 9 holes in at the golf coarse.

 I got to go to a really great event that WA Trust did for our family as well.  FYI really awesome idea!  The culinary school out at SCC does a cooking class thing.  We each took a recipe and made a meal to freeze.  So now we have some great meals ready to go when I'm in a pinch and I can just pull them out of the freezer and reheat!  So cool!  Thank you so much for that, and I really enjoyed meeting some of the awesome people Jonathan gets to work with.

 Jonathan Starts his next round of methotrexate on Wednesday the 24th.  I will let you all know what we hear on the MRI soon.  (that's the hanger...)

He has good weeks, and he has bad weeks

This week was a bad week, but we were a little more prepared this time.

Jonathan is on a random rotating schedule of a few different types of chemo.  His very first round did not go well in terms of side effects.  His subsequent rounds went much better.  Now this week we knew we were starting our rotation again from the beginning, so now we know more about what to expect. 

Last time Jonathan received this type and dose of treatment he became very sick.  Then once he began to recover he began to suffer from neutropenia, so he was readmitted to the hospital.  So I began to research and discovered a few things.  First the obvious, we needed way more options of anti nausea meds.  Second, his Neulasta shot was delayed by 2 to 3 days.  A Neulasta shot is a medication given to increase your white blood cell counts.  Almost like a rescue medication for your immune system after doing chemo.  Last round of this type of chemo, Jonathan was admitted to the hospital on a Wednesday, and was not released until Friday afternoon.  He then had to wait until Monday to get this shot at the doctors office.  (They do not administer this drug at the hospital... not sure why)  As I read through pages upon pages of info given to us, I discovered that this shot is to be given no less than 24 hours after your last dose of chemo.  So after a discussion with the doctor about this possibly contributing to his neutropenia we decided to admit Jonathan to the hospital a day early.  This would allow him to be released on Thursday, and get his shot at the oncologist's office on Friday.

So this time around, I called the charge nurse, Jonathan got the upgraded suite, and we walked right in, no waiting.  FYI this is the end of life room (probably not the formal name), but it is a very nice room.  It has a frig, microwave, coffee area, dinner table and a carpeted play area for the kids.  Becoming a frequent flyer and getting to know these nurses has its perks.  So he got started on chemo Tuesday at about 3:00.  After a few hours it was a quick reminder how hard this particular type is on him.  His color changed to very pale, his eyes became red and then the nausea... But even still he has his sense of humor.  When I arrived back at the hospital with dinner, Jonathan says "I left you a present in the bathroom."  Every women after hearing those words would proceed with extreme caution!  I went into the bathroom to find a hospital urinal fill with bright pinkish red pee... He just knew I would want to see it!  (Sadly I am kind of weird like that... It was a very strange color for pee)  Only after 10 years of marriage right?

Anyway, he was discharged on Thursday as we planned, but with some bad news.  His blood tests are beginning to show that his liver enzymes are becoming elevated.  The previous two types of chemotherapy drugs are processed through the liver and are very hard on his system.  What this means is that we need to watch this closely and possibly change the dosage of his treatment.  This news shot me right back into reality.  I guess lately I've gotten to this place where we just live day by day, and deal with little issue after little issue.  But this was a huge reminder of the big issue.  If we change the dosage of the chemotherapy, his chances of beating this decrease.  We are still in a war for his life and not just fighting these little battles.  However we can't give him such high dosages that his vital organs begin to shut down. 

It is really incredible how God puts people in the right place at the right time.  So this week my cousin Ryan, who is a paramedic, and his wife Haley, who is a nurse on her way to be a nurse practitioner had volunteered for the week to help with the boys.  So immediately upon hearing about his liver enzymes they sat down with me and started reviewing Jonathan's meds.  I'm not sure if any of you are aware of the amounts of medications cancer patients are on, but I feel so overwhelmed and out of my league.  Every drug has a side effect, and is processed in a certain place in the body, and I am so overwhelmed with trying to make sure he is getting exactly what he should have.  These two sat down with medical apps and reviewed everything he was on.  What dose, where the body processes it, alternative options.  We discovered he is actually nearly over dosing on Tylenol according to the new information of maximum dosages.  And many of his any nausea meds and pain meds were being processed through his liver which is being overwhelmed already with chemo.  So when I took Jonathan to see the oncologist on Friday for his shot, I had notes upon notes of questions about medications.  Needless to say we did end up making some changes.  Nothing he was taking was wrong, and I have 1,000 wonderful things to say about his doctor, but once again being your own advocate for the BEST option seems to be required.  And I love that the doctor doesn't get offended by all my questions and jumped right on board.

Now on Friday when we went to the doctor, Jonathan was really sick.  He just feels awful after the doxorubicin and Cisplatin chemo drugs.  So he was in bed all day.  Late that afternoon I went up to start packing for my trip to Moses Lake on Saturday.  When I went in the room I woke him up of coarse, so he decided to get up to use the restroom.  As I was sorting through my underwear drawer I heard the bathroom door slam against the wall and the loudest sound of someone hitting the floor as I've ever heard.  As I ran into our bathroom I discovered Jonathan unconscious on the bathroom floor.  That feeling right there is something I would wish on no one... In sheer terror I began to scream for Ryan.  He got right in there, found a pulse, made sure he was breathing etc.  Jonathan then began to regain consciousness and seemed to have not hit his head.  We opted not to call the ambulance and instead I immediately called the doctors cell number and talked things over.  I guess passing out is a side effect and Jonathan was pretty dehydrated.  Understandable since he is so nauseous, water or anything really just wasn't something he wanted.  So we made some new ground rules.  Jonathan must sit for a minute or more before standing, and now must sit to pee, and he promised to never do that to me again!  Frankly I think it scared both of us. 

During my car ride to Moses Lake that night, I did some reflecting.  What would I have done had a paramedic and nurse not been present?  I know how to check if he is breathing, and if he has a pulse, and I think CPR classes would come rushing back.  But really that isn't that much knowledge.  So I can find a pulse, that just means his heart is beating, but why is he unconscious on the floor then?  What do all the blood pressure numbers really mean?  Unless they were 0 over 0 I wouldn't know normal from abnormal.  So I took some time on Sunday morning to learn some basic first response stuff.  I hate the feeling of being helpless, so that is going to change!  Just one more thing you hope you never have to know/use, but just because I don't want to use it, doesn't mean I don't need to know it.  Ryan and Haley I can't tell you how grateful I am you were with me when that happened.  Thank you!

Each day that passes Jonathan is feeling a little bit better.  His nausea is getting better, but now he is getting a significant amount of cell death in his body so his sinuses are draining etc.  Please pray we don't deal with an infection this time!  Tomorrow we have another doctor appointment at the ENT to check his hearing again after this dose.  Please pray we don't see additional hearing loss.  And maybe they can help confirm we don't have the start of another ear/sinus infection from the drainage. 

To wrap this up, I'm not going to tell you something inspirational I found this week, I'm going to ask you a favor.  This week I've been thanking God that Jonathan was the virtue of health when we started this process.  (Well besides Cancer)  He doesn't smoke or drink so his lungs and liver were in top shape.  We've only been through one round and his liver is now showing stress... what would his prognosis be if it was compromised to start with?  His resting heart rate was that of an extreme athlete being in the low 50s, now it is in the 80s or 90s.  When he drinks coffee he is in cardio range.  What would we be dealing with if he had high blood pressure or a heart under stress from an extra 50 pounds?  Changing a dose of a medication that can save your life IS just as scary as the outcome of these possible complications.  So for those of you reading this today, this is my plea to you.  For your parents, and your children and your friends and most importantly yourself, Take a look... an honest look, and ask yourself how well you are taking care of yourself.  You never think in a million years that something like this can happen to you, but I'm here to tell you that it can.  And being as healthy as you can be matters!  You could be 29 years old with 2 children AND with cancer, and you need the best shot possible.

Thank You, from the bottom of our hearts!

I thought this week since we had so much happen, I would write two separate blog updates.  My first blog for this week is about the amazing kindness and generosity of people.  This week was a huge testimony to me about how truly kind so many people are down to the core of their being.

Over a month ago, Jonathan’s cousin Mary Lindsey was so upset she didn’t live in Spokane and was desperate to help us.  So she began to plan a car wash to raise money… I know she heard the critics, “Car washes don’t really raise much money” or something of the sorts.  Even I was a little nervous to be honest… I knew how much time was being invested by her.  But she was undeterred!   Because in her heart she knew…It isn’t always about money, It is often about the gesture. 

Shortly after the planning began and the date was set, the car wash became a car wash & bake sale that would be at the C&V Auto in Moses Lake.  The location is even a bit sentimental as C&V stands for Childress & Van Keulen.  This was so kind as a third generation Childress jumped at the chance to support his friend the third generation Van Keulen.  Boys I know your grandpas would be and are proud as they were such close friends that to this day, that friendship still stands strong.  Next, Jonathan’s step dad jumped in and donated a bunch of honey.  So it was a car wash, bake sale, honey sale.  Then Mary was contacted by the Bikers for Christ group who wanted to join the efforts with a BBQ.  Now that I think about it, there was even a lady there that brought a massage chair and was doing by donation massages.  Mary was working on no ordinary car wash, and I cannot tell you the lengths she went through to spread the word. 

Here are a few pictures from the day:

This was like no car wash you have ever seen before!  We were washing 2 to 4 cars at a time, and in a 6 hour shift, there was maybe 1 break… which happened to be right around the lunch hour.  Perfect time for a Hot dog!  I wish we would have counted how many cars went through the line.  It was incredible.  But what was even more incredible were the people that were there to help.  We had family & friends drop everything and drive from Seattle, the tri cities, Spokane, and Olympia.  There was a large group of people from Jonathan’s mom’s class reunion who spent the entire day washing cars.  These people don’t even know Jonathan or myself, and if I could only tell you how hard they were working.

Mary I cannot tell you how grateful I am that you were not deterred.  What started out to you as a loving gesture became something far more than anyone could have imagined.

I keep trying to figure out how to thank all of these people that came and donated and to the people that worked their butts off for Jonathan.  I feel like just saying “thank you” is nowhere near enough.  The gratitude that we have and the love that we are feeling is indescribable.  So Please just know what you did means so much to our family.

I will start working today on an update for Jonathan... check back soon!

I may have cancer, but I'm not sick!

As usual I'm getting messages asking how things are going this week... Sorry I'm a little behind with my weekly update. 

On Wednesday morning, Jonathan checked back into the hospital for his third round of chemo.  It is amazing how much you learn as you go through this process.  I now have the charge nurses direct line.  So first thing in the morning I called her to see if Jonathan's bed was ready.  The last 2 times checking in we waited around for hours in the hospital for a bed to open up on the oncology floor.  This time I called, we got right in, and they had his orders ready to go.  He had his IV hooked up very quickly and we were in business.  I feel like now that we are getting to know the people and the process, things are going better and far less stressful.

I can't begin to tell you how lucky we feel... Jonathan is handling this High dose Methotrexate really really well.  He has some very minor nausea issues, and still has not developed mouth sores.  That was something I really feared, because from what we were reading, those can be so painful and also prevent you from eating.  So we are so grateful he is not having some of the more common side effects.  Although he feels really pretty good while going through this dose of chemo, it is hard in other ways.  He feels like he could be at home and is so tired of the hospital, but this type of chemo while in high doses in your system can be dangerous.  So coming home too early isn't an option.  While in the hospital they are giving him doses of kidney rescue medications making sure he does not go into kidney failure.  If you come to visit him, you can not be in or around his bathroom.  Apparently any fluids that leave his body have the chemo in it, and it becomes air born.  The nurses have a cover for his toilet, and require a double flush system.  I was told if he begins to vomit, I need to evacuate the room and get a nurse.  (Again also very grateful the nausea is under control with this type of chemo)  I think some of these nurses are a little overly cautious though.  So it is hard to be at the hospital when you really aren't feeling that sick.  But it needs to be safe for the rest of us here at home when he does come home.  

Although the last two rounds of chemo were easier on Jonathan, they have been much harder on Jude.  Every time I leave to go visit Jonathan, he cries because he wants to go see daddy.  So Jude has been getting a few extra visits just for some one on one time with daddy.  I'm noticing he is really beginning to miss daddy at night time.  Daddy always put him to bed and Jude is doing his best to adjust, but is struggling a bit.  Jax however is really doing great.  I haven't seen any major attitude changes or anything that would cause worry.  He is really our trooper.  I think he is actually just enjoying having all these special visitors here to play with him. 

 

Jonathan has really been spending the last couple of weeks with the attitude of... If I think I'm sick and act like I'm sick, I will be sick and probably feel worse.  So last Tuesday he and a couple friends played 9 holes at the golf course.  It was sort of funny, because he asked the oncologist, and got the go ahead.  But a couple hours before he went to go play, his nurse came to the house to do his dressing changes for his port.  By the time he was done golfing the brand new dressing had been sweated off.  (This isn't really good because of his compromised immune system, this is where bacteria would be most susceptible)  So at the hospital he asked the nurse if they have sweat proof dressings.  The nurse said "typically chemo patients aren't golfing..."  I think he took that as a No.  Don't worry... He made another tee time for this Tuesday!  I will ask to be trained to change his dressing so it isn't taped back on with minion band aids this time. 

 

This week Jonathan's sister and new little bundle had their turn helping with the boys.  That is one brave girl to drive 6ish hours with a 3 month old by herself.  Not to mention taking on Jax & Jude with a 3 month old.  But Jonathan was excited to see baby Matthew and visit his sister and his mom who also came to help for the weekend. 

Next Wednesday Jonathan will check back into the hospital for another round of the stuff that hit him much harder.  He will get 2 doses of 2 different types over the coarse of 2 days.  I'm so grateful that my cousins are going to be here to help with the kids next week.  One is a nurse and the other is a paramedic... So when Jon comes home really sick, he will be in much better care!  And I think I'm way better prepared with other options in anti nausea meds. 

We continue to be overwhelmed with all the kind things people are doing for our family.  We are hearing about people donating sick leave so family members can be with us more.  We have had countless people volunteer to help in different ways at the big fund raiser in Moses Lake next weekend.  I guess the entire line crew that works with Jonathan's step dad Don have shaved their heads in support of Jonathan.  Again, I feel like a broken record, but having food brought to us is SUCH a blessing as well.  I could go on and on... But we are so encouraged by how good, kind and generous people are.

I want to remind everyone about the "car wash" (Only now it is a BBQ, Bake sale, Honey sale, car wash) fund raiser.  At this point, I'm planning on coming over to see everyone on Saturday.  I know Jonathan is going to be feeling awful, but he is in good hands.  So unless we get something horribly unexpected, the little boys and I will be there.  It is on Saturday the 6th at C&V Auto in Moses Lake from 9am to 3pm.

 

As Jonathan and I walk through this journey together I find myself grasping at scripture, books, sermons, quotes... anything that is encouraging, or a gut check.  I just want to make sure at every turn my head is screwed on right and we aren't making emotional decisions, but smart ones.  This week I had a couple of things I came across that I think are worth sharing.  The first was at church... for me, normally my most profound thinking happens there.  David, the pastor, went over the very common story of Daniel and the lions.  He said something that got me... Last week in my blog I mentioned people talking about the "why".  Well David asked why didn't God just do something to stop Daniel from ever being put into the lions den in the first place.  I thought, you know that really is a good question... God can do anything and why do we even have to go through something so scary.  But the end of Daniels story makes the answer to the "why" so obvious.  If Daniel never went into that Den, would we still be reading about him today?  It is his story, his testimony.  After the king saw how powerful Daniels God was, he told everyone he could think of.  This week I spent some down time skimming through a book my aunt gave me and I came across a quote that also struck me.  "As long as we see what has come to pass as being unfair, we'll be a prisoner of what might have been." (The book of awakening)  We are learning to accept that life isn't fair, but it offers moments that will change us, moments that will become our story, our testimony. 



What does normal look like with Cancer?

I have no idea what normal looks like when it comes to cancer, but this week has been as close to normal life as we've had for a while.  After jonathan came home from our unexpected stay at the hospital, he was feeling much better! He didn't have nausea, his dry mouth was way better and most importantly, he was eating!  The boys loved having "normal" daddy back.  He was able to spend some time playing baseball with the boys, He helped Jude learn how to Slip N' Slide, And Jon introduced Jax to the Ninja Turtle sequal... The secret of the Ooze.  (circa 1991)  He quickly learned this was a mistake as Jax wants to watch it about 3 times a day.

We were able to come get the boys from my parents.  Jon was totally fine in the car.  The boys had a great week going to the Demo derby, Rodeo, and fair.  It felt wonderful to finally have everyone for the most part feeling pretty good.  The only huge issue Jon was having is leg pain.  He is actually having quite a bit of pain in the location of the tumor.  The doctor said that most likely the cause of pain is necrosis of the tumor, or the tumor beginning to die.  As it shrinks, it begins to expose nerves which causes him shooting pain.  So it isn't an uncommon thing for him to stop dead in his tracks and just cringe in pain, and then it gets better.

On Wednesday morning we checked back into the hospital to start his next round of chemo.  This is a third type of chemo and so once again the unknown is a little scary.  This stuff is suppose to be a bit harder, but we shall see how he manages it.  As of today he seems far better then he did with the last 2 types.  I have advocated for some better/different options on medications.  So nausea seems to be under control and he is not getting the dry mouth.  This time we were a bit more prepared though... (Thanks Dana).  A big side effect that we are waiting for is severe mouth sores.  This hasn't happened yet though... staying hopeful.  Jonathan is able to eat these yummy dinners being brought to us since he is managing the nausea.  He can not thank you enough!  He is getting really stir crazy being stuck in the hospital room.  They won't allow him to go for a short walk or anything.  He keeps threatening the nurses that he is going to take his IV pump and use it as a skateboard in the hallway.  So I snuck a picture of his regular wall push up session...


A huge blessing that we are so grateful for is the amount of help we are getting with the kids.  My aunt Linda and ucle Frank have driven up for Oregon and are spending the week.  It is so incredible, we have had family members all volunteer for a week or 2, and we are actually covered all the way through Jon's surgery in October.  For those of you locally that are offering to help, please don't think I'm blowing you off, I'm just covered for a while.  It gives us such a huge peace of mind to know we don't have to worry about the kids for a while.

Jude is really starting to struggle with daddy being gone.  The night before daddy left to the hospital he was waking with something like night terrors.  He was screaming out for daddy but wasn't really awake.  This happened a couple of times before we decided to just let him sleep with daddy.  The next night when daddy was actually gone he had me awake wanting daddy again.  So I let the little washing machine sleeper in bed again.  Thankfully I think he is adjusting and we got him to stay in bed last night.  He is beginning to attach to uncle Frank and so that is helping.  But he really needed to see his daddy... So we arranged a special visit!

He wasn't shy about jumping right up in bed with daddy and getting some really good snuggles in.  It kind of melts your heart a little...

The only problem is this snuggle doesn't last too long before our little busy bee is into everything!  They decided to play Dr. Raj and check each other's blood pressure, give daddy rides on his bed and "accidentally" call the nurse a few times.

Jax is really being our little trooper.  He hasn't been showing too many signs of stress over our current life circumstance, however he is asking lots of questions about death.  He wants to read the bible stories about Jesus dying etc. and this is new behavior... I did finally get to spend some time with a family life specialist and talk about parenting kids going through something like this.  It is sad to learn that kids really are always thinking about the worst possible outcome.  It is crazy how much they actually do understand!  So I'm glad I got some time to chat with a therapist and learn some stuff to help the boys.  But I think mostly they are hanging in there pretty good, and I'm doing my very best to prepare and support them.

We get a lot of people in conversation talking about why or how could this happen?  People believe different things when it comes to a question like that, but we are really trying not to focus on that.  We know God's purpose is never to harm, we are just trying to be patient and open to learn what his purpose will be.  This week in my quiet time I was spending some time focusing on prayer.  I've been doing a lot more of that lately and this devotional was really focused on the state of your heart while praying.  I listened to a pod cast Jonathan's aunt Tammi sent us last week and it was discussing a lot of the why and how.  But it did touch on an idea that hasn't really occured to me.  I think for people of a catholic faith, this may be a less foreign concept, but using your suffering in prayer as a sacrifice for others.  This idea would really speak to the state of your heart to do something like this which was what my devotional was focusing on.  I think we all can be selfish people, and me just asking to get this over with and let us have "Normal" back would be a very different place than asking to use the suffering for a good purpose.  So this week, we are focusing on a heart check, and praying with the right motives.

Prayer requests: 1. Jonathan's Leg Pain, we think this is probably a good thing, but still painful none the less.  2. He is asking to pray for patients.  He is absolutely stir crazy, and we are just at week 1 of almost 3 straight weeks in the hospital.  3.  The boys and they are adjusting to this years "normal".  4. You wouldn't think it is so tiring to sit in the hospital all day every day, but it kind of is exhausting!  I need more restful sleep and to stay healthy and not become too exhausted from this.
Praise: 1. Jonathan seems to be handling this type of chemo fairly well.  AMEN!  Lets pray this stay this way.  2. Wonderful help with the kids  3. Wonderful friends that bring food and coffee... Jonathan's coffee girl Amber from Thomas Hammer even came to see him.  (that says a lot about that sweet girl!)  4. Great nurses!

Our food sign up sheet is full right now, Check back in 2 weeks, I'll probably have Nikki post our next few weeks of treatment coming in september/october.  And don't forget the car wash on the 6th!  Thank you so much to all of you that are doing this to help us.  I guess there is now a bake sale, BBQ and a car wash!  This is amazing and we are so humbled by peoples generosity.
  

Neutropenic

It took about 1 week after the start of Jonathan's first round of Chemo for him to start feeling better.  By last Wednesday, he was starting to eat some Mac and Cheese, read to the kids, and was coming out of the safety of his bed.  Thursday he was doing really well...  Then it was a fast road back to feeling really crappy!  It started with what we thought was a double ear infection, then it moved to maybe a sinus infection, and he was in really miserable shape by Sunday morning.  He decided to go to urgent care that morning and they did confirm he had a sinus infection but did not think he had an ear infection.  So we got some antibiotics.

Later that night, Jon and I were sitting outside, watching the boys in the hot tub when he told me his biopsy incision was so tender it hurt to even have his pants touch it.  I of coarse called my friends in the medical field, and my good friend Katie told us we needed to go to the ER.  Apparently when going through chemo, any small medical thing can be a big deal.  She was right!

At the ER we were told now that Jon does have a double ear infection, along with a sinus infection, and an infection in his leg.  After running all his blood we were told he was Neutropenic or has neutropenia.  This basically means you have an abnormally low white blood cell count.  This is often expected after chemo, but His counts were so low that bacteria that is normally present in your mouth etc. can cause infection.  And Jon's body was very obviously under attack.  So right there in the ER they started an IV antibiotic drip.  They then admitted him into the hospital for a few more days so he could continue these hard core antibiotics. 

So this is our life now for the next year I guess.  When you aren't in the hospital, you fear every little minor medical thing because it can very likely send you right back to where you came from.  Then there is the fear that whatever is sending you back is going to postpone your treatment of hell (chemo) which you actually want to have to save your life.  Because every time you postpone your chemo schedule, you reduce your chances. 

Jonathan actually had a better stay in the hospital this time around.  He was joking with nurses and making friends.  His favorite nurse Claire watched shark week with him while I wasn't there.  He wasn't nauseous and was feeling better as the antibiotics got pumped in.  We had a wonderful impromptu dinner that Gale brought us in the hospital.  I can not tell you all enough how much we love and appreciate food that is brought to us.  Jon took a picture of his dinner from the hospital that was delivered:

(those of you who enjoy hospital food, very sorry if this is offensive)  But Jonathan is VERY grateful for something other than mystery meat and fake mashed potatoes!  If you would like to help with food, This is something that we find very helpful.  Go to http://www.takethemameal.com/meals.php?t=QUFN4124&v=227183be69  We've had the new schedule posted for a little while now and there are still a few spots open for his next few rounds of chemo. 

Now that Jonathan is home and feeling much better things are getting back to normal for the most part.  His incision that was totally healed has split back open and is now oozing.  (Jon wouldn't let me post a picture... He says your are welcome Mom)  But I can deal with oozing incisions, that no problem.  We did end up getting to the ENT, and Jonathan is starting to experience minor hearing loss as that point.  This is a side effect of the Cisplatin and we will need to monitor this carefully.  The ENT doctor said he hasn't seen anyone totally loose their hearing, but after this is over, Jon very well may need a hearing aid. 

I got a wonderful gift from Stephanie, the photographer at our vow renewal.  I thought I would post the very cool video she made us.  And side note, this gal is awesome.  What a kind gift she gave our family and a very neat person.  If you need pictures... Call her!
http://animoto.com/play/U8c1SGDsu0whuc1Enx8ozw
www.shmilyfacephoto.com 
Stephanie Arieno   509-994-9323

Mary Davenport is also looking for help washing cars at her car wash fund raiser.  Please call her if you are able to help!  509-366-7200  This will be at C&V Auto on Sept 6th from 9-3.  Thank you to everyone that helps out in this way!  We are overwhelmed by your kind gesture. 

My inspiration for this week came from church on Sunday.  We learned about Esther this week.  I never would have thought the story of Esther would be one that would help much for something like this.  But in short, God's hiddenness does not equate to his absence.  Even though we can't see him and maybe we don't know where his hand is in each circumstance, but he is here.  He is working toward our deliverance.  In Esther 9:22 it talks about how sorrow is turned to Joy.  I can't see it now, and I don't know how it will be possible.  But I know God's plan is to use this and we will look back at this time and may never want to change it because of the Joy God will give us from it.  Sounds crazy, but I believe it!

We Celebrate 10 Years!

So I think it is about time for my once a week update on how things are going.  When I wrote last, Jonathan was just about hitting rock bottom after the first round of chemo.  This chemo stuff is really pretty horrible.  Jonathan spent most of the weekend and a good part of Monday pretty much curled up in a ball in bed, unable to open his eyes from extreme nausea, unable to eat or really put much in his mouth at all.  I was (or should say still am) pretty frustrated with the medications I was given to give to him.  It wasn't working... well maybe it was, he wasn't really throwing up, but the nausea was horribly uncontrolled.  I was given no back up meds as options when the first one wasn't working.  By Sunday afternoon Jonathan was down 6 lbs in 5 days.  This was torture for him, and me... watching him suffer is awful!  So this is my harsh reality that I need to be a better advocate for him and his care.  I need to be more prepared and push the doctors to give me what I need for the "what ifs".  

When learning about Jonathan's diagnoses, I read somewhere that 40% of cancer patients do not actually die from cancer itself, they die from the side effects of treatment.  It is becoming scary apparent that malnutrition is going to be our battle as he is now down 8 lbs in 8 days.  On Tuesday he was actually starting to eat again.  Jon's Aunt Tammy recommended home made mac and cheese (high calorie, and wet... he is suffering with horrible dry mouth) This was the first thing he ate an entire bowl of!  Trying to find foods that are high calorie, and not loaded with crap (sugar) that is feeding his cancer is a challenge.  I have given him ice cream at night just to get calories down him though.  He is starting to eat better now, but not the amount he was eating before this ordeal.  So even though he is eating, he isn't eating enough to gain weight back! 

As the days go by, Jonathan's nausea is really a ton better, but the leg pain that was almost gone, has returned.  I'm starting to wonder if they were giving him IV pain meds in the hospital that we were unaware of and that is actually why his leg was feeling better?  Another trouble he is having is that he is developing issues with his hearing... One of the side effects of chemo is high frequency hearing loss.  He isn't having trouble with that, but he says his hearing sounds super muffled and at times it is also really sensitive.  So I've scheduled an apt with an ENT dr. for Monday to explore what is going on with this!

I've gotten many texts wondering about "the spot" in his pelvis.  When I spoke to the dr. this week, I asked for a more detailed explanation.  I guess at times we all have certain spots where we get bone growth.  This is what they think the spot is.  He said it does not look cancerous at this time.  But they are going to continue to monitor it just to make sure that doesn't change. 

Yesterday, Jonathan and I celebrated our 10 year anniversary!  I have some really really amazing friends... A few weeks ago I was really struggling with what in the world we could do to celebrate when Jon can't really go out to eat, we can't go anywhere... So what's left?  My friends came up with a fantastic idea! 

 

We renewed our vows!  My girl friends did all the work planning and figuring out all the details for a small ceremony.  At about 4:30 I told Jonathan he couldn't leave the bedroom.  I was shocked at everything these girls put together.  So just before the ceremony started, I made my way upstairs and asked if he would Marry me.  (Luckily he said yes, or the next few hours would have been pretty awkward)

He was greeted down stairs by a small group of friends and an official ceremony.  Jax and Jude gave their mommy away, and Scott put together a very special little ceremony.  We had cake, fruit and a popcorn bar.  The girls even surprised me and got a real photographer... and just from her sneak peak photos, she did a great job.  It was the perfect way to celebrate 10 years!  He is going to have to do something really special at 20 years to top this.



The boys are coping with what is happening with daddy in their own ways.  Jax doesn't want to leave him and wants to hurry home whenever we do.  Jude who is a daddy's boy from day one, seems really cautious of daddy and is acting more like a mommy's boy now.  I'm trying to think of ways to help them feel involved and more comfortable.  So we taught them how to help and gave them the title of daddy's at home doctors.  This is a picture of the boys learning how to flush daddy's lines with heparin. 

They are really happy daddy is getting back to some normal daddy activities such as yelling at them for fighting... Oh wait, maybe I'm happy about that!  But they do love when daddy reads to them and plays board games.  All things daddy can do from bed. 

 

We are looking forward to this next week as Jonathan continues to feel better.  We are trying to plan some fun things that daddy can do before he is admitted back into the hospital on the 20th.

 

Many of you have been asking for the links to our other support sites.  Here is the link to the "Take them a Meal" page.  http://www.takethemameal.com/meals.php?t=QUFN4124&v=227183be69   I must say that on the days we have food delivered it is a huge blessing.  That is less time I have to take to go to the grocery store, cook, etc.  And we are able to eat off of left overs for a few days.  Thank you to everyone that has brought us a meal already.  It really is a huge help!

 

Here is a link to the fund me site that Jonathan's sister has set up.  http://www.gofundme.com/bxwja0   As I am learning about how all of our finances are going to pan out with COBRA, probationary waiting periods etc. this is just something that gives us a little peace of mind that if we need it, we aren't going to be in the red at the end of the month (or hopefully when this is all over!)  So thank you so much for those of you who have donated and supported us in this way. 

 

Jonathan's cousin Mary is working on a car wash the beginning of next month.  I've been getting lots of people contacting me about info on this.  I'm not sure how to link a FB event, but it is on Sept. 6th in Moses Lake, at C&V Auto from 9am - 6pm.  I know she need volunteers to help wash cars etc.  This is such a kind gesture of support and if you want to let Mary know you would like to help out, please email her at mary_davenport@live.com. 

 

We continue to be overwhelmed by how kind and generous so many people near and far are being to our family.  This is a huge reminder about how many good people there are out there.  We are so grateful for all of you. 

 

Thank you for all your prayers!