Tumorectomy!

For those of you who have not followed Jake's progress on Facebook, Jake had his tumor removed this morning/afternoon.  The doctor came about 20 min. ago and told us that the surgery was finally finished!  It went very well.  He did not have to have a skin graft (from his thigh) as they suspected they would need, so his healing will go much faster!

I am so relieved to have the cancer out of his body!  There may be some unknown complications down the road, but we can address them as they come.  Best case senario is that no more surgeries will be required and he only has to come to the hospital for check ups that have fabulous results!

I am so grateful to God for this great outcome!  I am very grateful to my friends, family and strangers who fasted and prayed for Jake and for our family.  I pray that this may never be your trial, but if not...my heart and new found strength is here for you to lean on.

Cancer Journey with Jake - part 3

It has been a long, long journey with Jake and his cancer treatments.  Some call it a battle, but for Jake and me, it’s something we endured. 

I did not have to lie in bed at night, in so much pain that sleep was at a constant evader. 

I did not have to have my hair fall out and never feel to eat because the taste of food was no longer a pleasure to consume. 

I did not wrest in bed praying for a comfortable position that would ease the pain and let me sleep…and let me heal. 

I did not suffer through radiation burns on my stomach and raw skin from the constant rubbing because of the inflamed and swollen state of different parts of my uncooperative body. 

I did not feel constantly cold because I had no body fat to regulate my body temperature.  I did not often fall because my knees would buckle while doing a simple task as walking.  I did not endure the ridicule of thoughtless passers by.

I did not lose my stomach contents when saline was pushed into my veins.

I wasn’t imprisoned at home because of my body’s lack of immune system.

I didn’t get dizzy and have fainting spells.

I did care for this child…not a child in size, but my child…my Jake.

My discomfort was very minor compared to his.

My pain was more from a broken heart…wishing that this life lesson was not so painful for him.   Hoping that whatever Jake needs to learn from this…he learns.

God told me I would like the outcome. 

This is the hope He has given me. 

This is what I hold on to that gets me through.

Now we have come to the final treatment plan.  The tumor will be removed in 3 days.  My hope is that this is the end of this journey.  There is a guarantee of many more trials, much more learning, stretching…dross removal.  Yet, we are never left alone.  Always God is there!  He has sent angels to constantly watch over us.  Our ward family is always there to help us through this.  There have been shoulders to cry on, hugs of comfort, love and support.  Women have come into my life that share the same worries and have experienced the same heart wrenching care of their children.  A friend, Randy, came over at the very beginning and shared his experience with cancer.  Somehow, acknowledging our fears gave us comfort.  Helping us understand what to expect…somewhat, helped.  Asking questions of the doctors and having doctors that were willing to explain anything we were concerned about…they never gave us false hope…but knowing what we were dealing with was somehow more comforting than not knowing.

There is nothing like being on the receiving end of compassion to learn to have it for others.  Sometimes when you feel the lack of compassion from those who you feel should show it, is what teaches you the most.  When Randy was going through his cancer treatments, I did not make a lot of effort to show my support, not because I didn’t care, but because I didn’t know how the best way to show it would be.  They were inundated with good wishes and love from the ward and I added mine to theirs.  For me, talking about what Jake was going through would make me re-live the pain, so I didn’t talk to them about what Randy was going through.  Now I’m afraid it looked like I didn’t care.  I did talk to Randy about it later and he was very understanding.  He has been a source of hope and strength to us, even though it wasn’t his plan to be.

I’m not sure what “gird up your loins” really means, but to me, it means don’t look back.  Take a deep breath, find all the strength you can muster, pray for help from God, and take a step into to muck…don’t look back, just keep trudging forward until you get through that deep patch!  Never give up!  Never doubt that you will make it through this!  Don’t waste your time wishing for something else, just go!  Don’t stop and feel sorry for yourself because the muck will engulf you and make it harder to move on.  There may be times when you feel you can’t make it by yourself, but if you reach out, God will be there and He will carry you for a while, then He will teach you how to get through the muck without getting bogged down…and when you really get the hang of it, you will reach out and help others walking the same path…and soon, your hands will be His hands.

When you get through that part…you feel stronger…and although there are more mountains to climb or more muck to go through, it’s never as hard as the first time.  You never have to make the journey alone and just as exercise and strength training makes your muscles stronger, exercise in faith and strength training by going and doing also makes you stronger…I’m just saying…

Surgery

The surgery is scheduled for Wednesday. He will be in the hospital for about 5 days (UofU). We will find out when he gets his port out today.

Stay tuned!

What the doctors said...

Very apprehensive approaching this day!  The first appointment was with the Hem/Onc doctor.  She wanted to show us the CT/MRI/PET scans so we could see what the tumor looked like on film.  Sigh...not so pretty.  You could definitely see that the tumor was live and doing well...stupid cancer!!!

The second doctor we saw was the Urologist.  He looked at the scans and felt the tumor under the skin.  He is going to get a couple of other doctors involved.  He told us that the tumor needs to be removed (not sure why they didn't try to do this before).  I think they wanted to shrink it as much as possible first.

We were hoping that some more radiation would do the trick (less invasive), but it doesn't look like that is going to be an option.

Jake will have to have a skin graft (probably from the back of one of his thighs).  The doctor is very hopeful that everything will work out smoothly, but said it is too hard to know what is really going on until they actually open him up.  They are looking at about a 5 day hospital stay...maybe as early as next week.  He will need some reconstructive surgery, most likely.  Then it will take him at least a month of taking it very easy.

Bleh!

Wasn't expecting this!  Please pray they can remove this easily!

What I know is that everything happens for a reason.

What was normal like, again?

Game Plan

We have to meet with the Urologist before we know what to do next.  They are hoping that they can remove the tumor.  I will let you know Monday night.

Good News/Bad News

So I finally got a call from the Hospital with the PET scan results. 

The bad news is, the tumor is stll active (Live tissue)
The good news is, it is not anywhere else in his body.

Devastating!  Jake was upset, but not visably.  I had to ask him how he felt because I couldn't tell by his face.  He hugged me for a long time and promised he would continue to fight it.  (Yesterday, he wasn't so sure he could endure much more!) 

We won't know the game plan until tomorrow.  I am, surprisingly, optimistic.  I don't feel like this is a death sentence for Jake.  I believe that there is something that will make him better...just not sure yet what it is.

I don't want anyone to feel like their prayers weren't heard by Heavenly Father!  He knows what is best for Jake and I totally trust Him with Jake's life!

Your prayers have given me strength beyond any capacity imaginable!  I may still cry if I talk about it, but we wll get through this.  Crying doesn't mean I'm not coping...it just hurts to see your son in pain...but it's ok...I'm ok...

Thanks for loving and caring about us.  I know it's frustrating not to see the results we had hoped for...but sometimes life doesn't always turn out the way you dreamed...it's a very interesting adventure!

1 year ago today...

One year ago today...was the beginning of much learning and growing.  I admitted to Jake that I was very nervous about his PET scan today.  The Radiology Tech guy, Doug, was so nice...I was hoping that I would be able to talk him out of revealing some results before we left...but, I think it's against the rules to do so...so we wait, just like the other parents have to.

Dave went with this time.  He did most of the work in helping care for Jake before the scan this time.  I was so happy to share the burden.

I had a very nice session with my (or I should say..Jake's) massage therapist right after and she helped me to relax.  Her name is Leslie and she is very intuitive.  She somehow knows the right things to say to calm my troubled heart.

Now I feel very calm.  Whatever it is...it's ok.

Jake update

More waiting...We are getting a PET scan on Wednesday.  This will (hopefully) tell us whether the tumor is dead or live tissue.  I'm afraid....I so need a vacation from worries!

If it's dead tissue...no problem...however, he is having more swelling and more pain, which needs to be addressed.

If it's live tissue...I will be devestated!..nevertheless, we will deal with whatever we have to deal with.

Dr. Wright called me a couple days ago and she did research on his CT scans to verify if the tumor was bigger or smaller from the beginning.  Apparently, the biggest part of the tumor was about 6.5 cm (not 4 cm as they had told us in the beginning).  Now it's 5 cm, smaller, but not that much.

(Sigh!)

Chemo Journey Part 2...Patience, Learning, Enduring, Patience...

Colored folders are bills, binder is everything I didn't want to know.

The first chemo treatment was an overnight stay.  It wasn’t so bad, but the next day a constant stream of nurses came in for “caregiver training”.  Talk about overwhelm city!  First they bring in this big blue binder…full of stuff I needed to know to take care of Jake and info about the drugs they would be using on him and about Rhabdomyosarcoma.  Can you say…Information Overload!  Perhaps in hindsight I should have had Dave there with me…at least for support.

Dave would come to the hospital any time I asked him to.  He would always come and sit with Jake after work.  He would have been there more if I had asked him to.  Handling the hospital stays and care by myself was my own doing.   I had the most medical training between the two of us, so I felt I was best suited for the job.  However, I wasn’t prepared for how alone I felt at times and the pressure to do it all…not to mention how scary it was to get bad news and have no one there but your angels to hold you.  I tried hard not to cry in front of Jake.  He felt sick enough with his illness, I didn’t want him to feel bad that it made me cry…often.  I was recently told that it was ok to let him see me cry because it was ok for him to see that I was human.  I’m a leaky human!

Primary Children’s Hospital was great to make Jake feel comfortable and help him pass the time with games and stuff.  They gave him pretty much whatever he wanted to eat.  I believe week 10 was when it grew old.  I remember Jake and I both saying…”How much longer do we have to do this?!”  It wasn’t long after, that the smells of the hospital started to make him nauseous.  The smell of the hospital food, the cafeteria, alcohol swabs, hand sanitizer, even just looking at a syringe made him throw up…poor guy!  There came a point where he just didn’t want the treatments anymore.  He wouldn’t go to the hospital when he had fevers the last 3-4 months of treatment.  The doctors were very accommodating when Jake started hating the overnight stays.  They arranged for him to get his chemo all day long at clinic and to get hydrated at home.  This meant I would be his home care nurse in the wee hours of the night and morning.

I can’t tell you how many times I would apologize to Jake for the shots I had to give him (very painful).  Not because I was bad at it, but the shot would burn when it went in and for some times after.  There was nothing I could do to make it better.  We were both very grateful that we found an alternative shot that, although it hurt just as much, I only had to give it to him once after the “long” chemo. 

One of our struggles, Jake being 19, was how much say Jake had in his treatment and how much say I had.  There were times that, although “mother knew best”, he was so sick of the treatment, he didn’t want to do what was best, just what was easiest.  If it wasn’t life threatening, I had to let him use his free agency.  Since we have no way of knowing what would cause the infections or the fevers, there may be a price to pay later…or perhaps it was a good gamble.  I guess we will wait and see.