Skin Cancer too... Why Not!

I'm beginning to feel like I'm writing a book.  Our story was getting a bit boring.  So Jonathan has bone cancer and we are in the hospital again... I guess the story was ready for a twist out of left feild that no one expected.  Well this is that chapter.

I first will start with my update on the MRI from last week.  Jonathan and I went in for his MRI on thursday night.  I did actually sleep the night before and we were ready.  Prepared ourselves for the possibility that this thing in his leg is bigger, but really hopeful it was getting smaller.  We understood that there was a good chance we would see no change and get no information from this scan as well.  But what we didn't prepare for was the scan not working!  With each day that passes the pain in Jonathan's leg gets worse.  At this point he gets shooting pain down to his ankle and up to his groin.  We are trying all kinds of pain meds with not much success.  So as he laid on the MRI table, his leg as usual was spasming in pain.  It isn't like Jonathan is moving his leg, it is that he gets this nerve pain which causes his muscles to flex.  SO, they were unable to get any clear images on the MRI because of the involuntary movement in his leg.

What we do now is reschedule the MRI for next Tuesday with an anesthesiologist. They will need to sedate him with a muscle relaxer that will hopefully help with the leg spasming.  So hopefully on Tuesday morning we will get a completed MRI and hopefully not long after that we will get a report on the results.

Now for the twist coming out of left feild:  About 2 months ago while one of the nurses was listening to Jonathan's lungs... You know how they do with the stethoscope on your back.  She pointed out a spot to me on his back.  She said "see how this color surrounding the original spot is different, that is a sign you should probably go get it checked."  So I sort of dismissed her and thought, I don't need one more thing to do.  It is probably nothing.  But one of Jax's friends from preschool has a mom that is a dermatologist.  We've gotten to know them a bit in the last year and develop a friendship.  So one day I ran into Mara, Justin's mom at school.  It was some time later, but I remembered I intended to ask her a favor.  She agreed to just let me take a picture and email it to her and she would let me know if we need to really take the time to come in.  So a few weeks later I finally got around to photographing Jonathan's back and emailing Mara.  Of course she said we probably should come in so she could biopsy them.
                           
So on Tuesday morning when Jonathan's counts were the best and we weren't in the hospital, Mara was able to squeeze Jonathan in.  She cut out 3 spots on his back and measured 2 more that look suspicious but weren't really big.  On Thursday night when I got home from the hospital, literally as I was walking through the door my phone rang.  It was Mara.  I could tell by her voice that she was a bit uncomfortable.  This poor girl had to call me to tell me that not only does my husband have bone cancer, now he also has skin cancer.  The biopsy showed that these spots are stage 2 melanoma cancer.  Not just a simple non spreading type of skin cancer, but a more aggresive type that can spread to his lymph.  He needs to have surgery and he needs to have it pretty quickly.  She said with everything else going on, she was going to refer us on to cancer care northwest and send all of her findings to our current oncologist.

Jonathan spoke with our medical oncologist this morning.  These 2 cancers are not at all related to each other.  This is just a fluke absolutely unlucky weird chain of events.  Ever heard of a 29 year old with 2 unrelated forms of cancer at once?  This is the most dangerous type of skin cancer and we need to get it out.  (I googled it and the first thing I saw was this type of skin cancer causes the most death from skin cancer.  It is caused by genetics and sun exposure...not sure if I want to keep reading but will now be a nazi about sun screen) So Dr. Raj is arranging to have a surgeon come and consult with us today and most likely will be having surgery this weekend and not coming home from the hospital.  We will continue with his methotrexate next week, but may have to delay his cisplatin and doxi treatment until his incisions are healed.  This may in the long run push surgery on his knee as well but don't really know anything for sure.  We need to consult with our surgeon in Seattle.  Dr. Raj did say that during surgery they will inject a dye and it will tell us if the cancer has spread to his lymph.  However when we did the PET scan in July, there were no spots at that time.  But this may also offer us another reason to throw the rules out the window and just get another PET scan sooner.  So we are hopeful that this will just be a surgery and we can move on from this bump in the road.  However it is quite discouraging that it may effect his other surgery, or maybe it will help get a PET scan sooner... trying to think of some reason this could be positive, but I'm really stretching. We did find out that the reason he can not get another PET scan is not because it is too toxic, but actually because the insurance won't pay for more than 1 every 3 months.  So, now our dr can argue that this is a separate issue requiring another scan.

As for now we are still gathering information and forming a new plan.  We will see what the surgeon says and I'll let you know the updates as I know more.

I have had kind of a rough week.  After working myself up about the MRI, then not getting it... It just is hard to stay positive all the time.  I really try not to have pity parties, but bad days are inevitable.  So I took charge again, decided I needed to stop comfort eating and get my head on straight.  The girls took me out on Tuesday night and I'm really learning how much it helps to feel love.  I feel like my faith is being challenged and I'm really trying to remain focused on God's love and the love from others.

About a month ago my older sister sent me a small section of a blog written by a cancer patient.  It was actually written to her family and friends.  At the time when I read it, It seemed like good advice, but now I can tell you how right she was.  She was talking about just doing something and not waiting to be asked.  I can not tell you how many people say to us, "let us know how we can help you." And I truly believe their offer is sincere.  However most of the time, it is so hard to ask, and your so caught up in everything you don't even know what to ask for!  The topic reminded me of a sermon called Love Does.  I think if you asked most people what Love is, they would describe a feeling.  After what we are going through, Jon and I would tell you it is an action or a verb.  I remember some time ago Pastor Joe talking about this topic and how love is a command.  You can not command someone to be happy or sad, but you can command an action.  God so loved the world that he GAVE!  I think he mentioned in 1st Corinthians in the love chapter that every discription of love was a verb (in the greek text).  Love is the feeling that you get that is an involuntary response to an action.  I can not tell you how many people have given us this response.  It is so nice to just come home to a mowed lawn,  have someone bring you dinner, or have a gift waiting for you at a front desk or in the mail.  Dinners, car washers, childcare help, cleaning, groceries, and Jonathan's favorite, visitors at the hopital... I could go on and on.  I'm not telling you this so you all will do something for us...you already are!  But I just know in times like right now, feeling loved really helps a ton.  An offer doesn't get the job done.  We are so grateful to have so many people that DO so many things.  So today my advice is this, if you know someone that needs something, don't offer, tell them when you are doing it.  Your actions will make them feel love so much more than just the words that are simply easy say.

 Jonathan is doing pretty good in the hospital this week.  Giving the nurses heck as usual and trying to make the best of each day.  The nurse told him he needed to gain some muscle back so this is what a few liters of saline can do! 

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!