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!