Two steps forward, one step back

After Friday's Cancer Care appointment, we got the good news that Justin no longer needed his GCSF shots at home anymore.  His counts were good.  After only three days at home, we were surprised but thrilled.  Especially Justin!  We took off for the lake and had a fabulous weekend full of beaches, boats and bonfires with great friends.  Trevor and Brennan had to come home on Sunday night because they both had to work on Monday but the twins and I stayed until Monday.  My aunt and her hubby live at Caddy Lake so we went there for the afternoon and had supper with them.  My cousin, Keith, took Ryan skiing and tubing behind the new Seadoo and took Justin for a cruise around the lake on it as well. They had a blast! We got home about 9:45 last night.  We had to go to Cancer Care again today.  Justin had a blood test and his line care done (where they flush the central line with saline and heparin to ensure that it doesn't get blocked).  The nurse came back with the results and Justin's WBC (white blood count) was really low, as were his neutrophils.  The neutrophils are the cells that are really important in fighting infections.  As it turns out, he should not have been off of his GCSF shots after all.  The doctor had thought that Justin was a week post-chemo at our last appointment, when in fact it had only been 3 days.  So, he is back on the shots....and NOT happy about it!  A mistake, but oh well!  Hopefully on Friday his counts will be back up and he can go off it again.  He has to be careful not to be around sick people for the time being and be very vigilant with hand washing. We need to get his counts up before next week so he will be able to undergo the next course of chemo.  Shouldn't be a problem with over a week to go.  Tonight is the La Salle Youth Group's head shave.  We will be there with shavers and cameras ready!

The fur (or hair) is flying!

Kris and Brennan before

Brennan and Kris after

 There has been a lot of hair flying around here lately.  As soon as Justin's hair started to come out, he told me it was time to shave it off.  Well, it seems he has started a trend around here.  In the past few weeks we have seen so many bald, or nearly bald, heads around these parts.  It started with Justin's friend, Daniel, who showed up at our door with his hair shaved even before Justin had lost his.  Next, it was friends Reiss and Travis.  After many days of nagging me about it, Ryan followed soon after.  The day I shaved Justin's head, my Dad and Trevor joined the bald squad.  Our neighbour Noah and my brother-in-law James were next. And it continues.  My clippers have been used so much over the past few days that I'm going to have to retire them and buy some new ones.  The other night, Brennan and his friend Kris decided it was time to join the ranks.  Kris has had long, curly locks ever since he was a wee tot so for him to take this stand for Justin was huge!  Last night, our neighbour Dason called and said he was ready to go for it and wanted Justin and Ryan to do the honours.  Since we do the "haircuts" out on our driveway, we do gather some attention.  Neighbours from across the street, Jim and his son Brent, wandered over and lined up at the chair for their turn.  I could probably start a hair salon in my house and do quite well, if I were to charge for it! The hair shedding will continue on July 30th as the La Salle Community Fellowship Youth Group is having a Head Shaving night for those who want to support Justin in this way.  We continue to be blessed by people who are showing their love and support for Justin.  To top it off, Justin is feeling better and better every day!

                                                                                                       Dason during and after (above)

           

 

James before and after

 

Brent, Justin and Jim

The Crew

Back Row:  My Dad (Tom), Brennan, Trevor, Kris

Front Row:  Ryan, Justin, Noah

 

Blessings flow

While sitting in the hospital on Monday, I got a call from Brennan (our 17 year old son).  He told me that there was a table set up on Main Street in La Salle and kids were flagging people down and handing out juice boxes.  He stopped to see what it was all about.  He was told by the children that they were handing out juice boxes and accepting donations for a boy who has cancer.   His name is Justin Neudorf.  Brennan said, "Oh, that's my brother!"  They were also handing out orange ribbons.  I was asked by a friend from church, last week some time, what Justin's favourite colour is.  She wanted to tie ribbons to some of her trees in honour of Justin and remind her to pray for him.  I got an email on the weekend about an "Orange Ribbon Campaign".  We now have one tied to our basketball net in our driveway and one on our door handle.  Another neighbour boy also brought over some money last night.  He had a lemonade stand and wanted to give the money to Justin.  We will put this money with the over $200 we received from "Juice for Justin" and donate it to Cancer Care on Friday when we go in for our appointment.  Youth Pastor, Steve, also stopped by yesterday to see Justin.  He brought another VICTORIOUS Box, exactly the same as the original, filled to overflowing with more gifts.  He said the gifts just keep coming to the church.

They say everything happens for a reason.  It's hard to imagine any reason why a kid would get cancer.  It's amazing the way our community has come together for Justin...for us.  We continue to be blown away by all of this.  People we would never have expected to care, do care.  It's humbling.  It's inspiring.  Maybe that's the reason...

There's no place like home

We're home.  It was a long, miserable couple of days in the hospital, but we're home.  Justin was still feeling nauseous but was adamant about coming home Monday night.  Saturday's blog was very dark and full of anguish, and Sunday was much the same.  All Justin wanted to do was go home and be surrounded by the people he loves.  All day Monday he was counting down the hours until he could come home.  After the chemo is done, they have to flush it out of his system for 24 hours.  His chemo was finished at 9:30 on Sunday night, so 9:30 Monday night was the magic hour.  Monday around noon, a nurse came into his room with some good news.  It seems that the 24 hour flush is especially important after one particular drug and that drug was finished at 7:30 on Sunday so we could go home at 7:30!  We actually got out a little earlier than that and got home around 7:45.  We pulled into the driveway and were greeted with a "Welcome Home Justin" sign on the garage door.  Ryan (and some neighbour friends, I suspect) had been busy!  As we stood in the driveway, Trevor pulled a huge box out of the back of the truck.  To Justin's surprise, it was a punching/kicking bag.  Justin has taken Taekwondo and when he found out he had cancer, he had mentioned that he wanted one to write CANCER on and kick the crap out of it.  And he did just that! Even feeling as weak and crappy as he was, he round-house kicked it a few times.  It was short-lived, but really good to see that energy again.  As of yesterday, Justin is still having ups and downs with nausea.  He seems to feel really good, then it quickly turns and he feels really nauseous.  He is continuing to take his anti-nausea drugs and hopefully this will pass soon.  He also has jaw pain and feels achy all over, which are both side effects of the chemo.  Regardless of how he feels physically, his spirits are much better now that he is home. 

Trying to find the positive...

Well, chemo is in full swing and Justin is feeling awful. The VICTORIOUS Box got dipped into not once, but twice today.  It's hard to believe that just yesterday he was feeling so great; so alive and hopeful.  Today he is so full of despair; so bleak; so hopeless.  My heart aches to see him like this. I feel so helpless.  I'm his Mom.  I'm supposed to make everything better. What can I say to convince him that this will get better?  He knows in his head that it's the truth.  He's been through this once before and came out of it feeling great.  But these facts just don't matter when you are stuck in a hospital bed with toxins pumping into your veins, feeling like you just want it to be over.  How is anybody, especially a twelve year old boy, supposed to look beyond the reality of right now and look instead toward the future.  His future is a year of the same. To say it's not fair is an understatement.  Life is not fair.  We say it all the time to our kids when they complain about not having the latest gadgets or if they don't like their curfew.  These things that matter so much to so many kids, are so insignificant when you are a child who is fighting for your life. There is still much to be thankful for, don't get me wrong.  If I dig deep, I can find these things.  We have a great support system in our family, friends and community.  We are being surprised almost everyday with the compassion and generosity of those around us.  I know that we are being prayed for daily and I ask that you please continue to do so.  I have always said, right from the beginning of this, if Justin is feeling good ~ then I am good.  Well, my Justin is not feeling good right now.  Enough said.

Cancer Care and The Stanley Cup...an unlikely duo

We were at home this morning, just getting ready to leave for Justin's appointment at Cancer Care when we got a phone call from my mom; she had heard that Jonathan Toews was going to be at Children's today with the Stanley Cup.  We got to Cancer Care and inquired about the Jonathan Toews' visit .  They weren't sure, but they were going to check into it for us. Justin had to have his blood checked and a check-up with the doctor to make sure he was ready to undergo chemo.  It was 10:15 am and we got word that Toews was going to be on the ward at 10:30.  The nurse was in the middle of taking blood and was about to start the IV fluids.  Another nurse came in and said, "Don't start the IV yet, he needs to go and see Jonathan Toews!"  We ran across to Children's and up to CK5 with moments to spare.  He walked into the room and immediately came over to Justin, asked him his name and shook his hand.  He then posed with Justin and the Cup for a photo op.  Ryan got there just in time to get his picture taken too, so everyone was happy!  We then had to go back to Cancer Care and see the doctor.  Everything was good, so they started his fluid flush and then we waited for a bed to become available on CK5 so he could be admitted for his chemo treatments.  We got up to the ward and chemo was started around 5 pm.  It's about a 6-8 hour process, so he won't be done until about 1 or 2 in the morning.  Trevor is staying with Justin tonight and tomorrow night, as he has to work on Monday.  I'm hanging out with Ryan tonight watching a scary movie...Trev's side of the bed may be occupied tonight after all! ;)

People are just good

A couple of days ago, a friend of mine brought over a box for Justin.  It's roughly 15x13x12 inches in size.  It's beautiful; covered with blue paper, silver metal trim and 3D red letters on the top that say VICTORIOUS.  On one side is a verse; "Don't be afraid for I am with you.  Don't be discouraged for I am your God.  I will strengthen you and help you.  I will hold you up with my victorious right hand." Isaiah 41:10   Inside the box are several gifts; some wrapped, some not.  They have been placed inside the box from people all over our community.  People Justin may or may not even know. The idea behind this VICTORIOUS Box is that whenever Justin is feeling down, he can reach inside this box and choose a gift.  These gifts were specially chosen to inspire Justin and lift his spirits when he needs a boost.  I come to tears every time I think about or look at this box.  This box that has been filled with things to help make my 'little boy' feel better in his time of need.  This box that has been filled by people who take time out of their busy lives to care enough about my 'little boy'.  I think about this box and I am filled to overflowing.  This journey is showing us many things, but one of the biggest things we are being shown is that people are good.

Life, though a little different, goes on...

Justin started his first round of chemotherapy on Friday, June 28th.  He had treatments everyday for 3 days.  He was very sleepy and spent most of the time sleeping, which I think is a blessing.  When awake, he was very nauseous and the doctors and nurses were giving him various anti-nausea drugs to try to keep it at bay.  He was feeling much better a couple of days after the chemo and we were able to come home on July 3rd! Justin was so happy to be at home and without pain or nausea.  We had to give him a subcutaneous (under the skin) shot every day at home to boost his white cell counts, as the chemo knocks them out.  At first we had a health nurse come out to do it, but realized that wasn't very convenient.  Trevor (Dad) and I (Mom) were both trained to administer the shots by a nurse.  I did it once and was quickly fired by Justin!  It seems that Dad is the better nurse and will be the one doing them from now on! :)  We attended appointments at Cancer Care on Tuesdays and Fridays to check his levels and make sure he is in overall good health. After a week on the shots, his counts were good and he didn't need them anymore! On the weekend of July 12-14, we were able to go out to our trailer at West Hawk Lake.  It was so good to have a 'normal' weekend of sun, beach and boating, although Justin is not allowed to swim due to his central line.  It is now Wednesday, July 17th and we are gearing up for round two of chemo which starts on Friday.  I need to mention that we wouldn't have been able to make it through all this without the amazing support of all of our family, friends and the community that we live in.  We have been blessed with meals, goodies, gifts and prayers from so many.  It is incredibly overwhelming.  Even through this dark time, God is good and shows Himself to us through the love of others.  It's going to be a long ride....we're going to take it together.

The Beginning

It all started on June 15th, 2013, with an admission to Children's Hospital with a case of suspected pneumonia.  A chest x-ray revealed that Justin's left lung cavity was filled with fluid.  A chest tube was inserted and the fluid drained.  A second x-ray was done at that time which revealed a tumor behind his lung, coming from his rib. On June 27th, after many scans, x-rays and biopsies, Justin was diagnosed with Ewing's Sarcoma.  Our world as we knew it, had just ceased to exist.  We now have a child with cancer.