A Mother's Perspective

My husband has been so great to keep up the blog.  He has written almost every post; my sister started it for us and he has kept it up.  He also is the one who always remembers to take pictures as well.  I've gotten better at taking pictures because I've realized how important it is to journal this new adventure we are on.  I've met a couple of other moms who have been on this same journey.  I've watched videos of their little cancer cuties.  Their stories, videos, and pictures have touched my heart so now I hope we can touch someones as well through our journey.

I'm going to start from the beginning--I know you've heard our story before if you've read our blog, but just bare with me.  Hopefully, I won't bore you.

EARLY,  Saturday morning (around 3:30 a.m.), Oct. 11, 2013, Jake came into our room.  He woke me and told me he needed to go to the bathroom.  (He hadn't been sleeping good for a while now, but I figured it was from being sick and he was just potty trained a few weeks ago.)  I got up and took him.  As he was going, I noticed blood--blood in the toilet and in his pull-up.  My heart skipped a beat.  I put Jake back to bed and went to wake Wayland up.  We were both concerned and couldn't  go back to sleep.  I finally got up and decided to google "blood in urine".  Most everything I read said UTI or kidney infection.  I relaxed and thought well we will take him to the doctors in the morning.  Wayland and I laughed because our kids tend to always get sick on the weekend and we end up going to instacare.  Sat. afternoon, we took him in.  The P.A. checked him (not very thoroughly), swabbed his throat, and tested his urine.  About a week prior to this we all had strep throat.  Jake was not feeling well at this same time so we figured he had had it as well.  The P.A. found red and white blood cells in his urine.  He said it was probably from the strep infection which if not treated can make your kidneys infected or swell (you know I truly can't remember how it affects it but it somehow affects it).  Anyway, he gave Jake a powerful antibiotic shot and told us we needed to go to the AF hospital to do lab work to see if he still had a strep infection.  He then told us to come back on Monday to get his urine checked.  On Monday, my kids and I went to the doctor.   They tested Jakes urine again.  His urine actually looked alot better.  The P.A. said that there was still a few red blood cells in his urine, but it was clearing up.  Because we were dealing with his kidneys, they had to  check his blood pressure as well.  It was a little high.  On a different note, a week prior to all of this happening, Jake was carrying Zach's big plastic nerf gun.  He was running in the kitchen with it and fell right on it.  He fell on the gun on the right side of his body; his stomach hitting it hard.  Wayland had felt a lump Sunday night (the night before we went back to the doctor on Monday).  At this doctor apt., I had the PA check out the lump.  I told him how we think he got it.  He hesitated and said, "Well maybe I will have Dr. Edwards come and check it out."  Then he decided against it, thinking that it was from the fall.  The PA continued to think that all of this was caused from the strep infection even though his lab results said there was no strep infection in his body.  The PA wanted us to come back on Wed. and again on Friday to get his blood pressure checked.  He then told us that if he were to get an extreme headache or crying uncontrollably then we need to get him in immediately.  Monday night I just had this bad feeling, a feeling I couldn't shake.  It was making me upset.  I kept thinking about Jakes kidneys feeling like there was something more wrong.  Tuesday morning, Jake woke up not feeling good at all--he hadn't slept well either and ended up in bed with Wayland and I.  I was an emotional wreck Tuesday--I had a sinking feeling that something more was wrong.  I was babysitting my friends little girl at this time.  I called her and told her that I wouldn't be able to watch her daughter today because Jake wasn't feeling well.  As I was talkig to her, I couldn't hold back the tears.  Jake had become very tired and just wanted to sleep, yet he was clinging to me and wouldn't let me put him down.  I sat in my rocking chair and held him as he slept.  I called the nurse at my pediatritians office--she said "Unless he's screaming or complaining of a terrible headache theres no reason we need to see you."  As the day continued, Jake got worse.  He started in with a fever.  I gave him some IBprofin and then he fell asleep again.  I called the nurse back.  I got a different nurse and she told me that Jake needs to come in today and she wanted him to be seen by a doctor.  She set the apt. up for 4:00.  By 3:00, Jake was crying non-stop and I couldn't put him down.  My heart was beating out of my chest.  I was so anxious.  I called the nurse back and asked if I should bring him in right now and if this was considered an emergency.   She said, "No, just bring him in at 4."  Through out this day I was also on the phone with my mom.  She brought me comfort and supported my decisions and felt as I had that he needed to get in to a doctor ASAP.  Wayland did as well.  I wanted Wayland to come home from work early so he could stay with the other kids.  He said he had a meeting and couldn't make it home.  Brielle also had a mandatory piano practice this night as well.  Luckily, another dear friend of ours,  said that she would take Brielle to and from piano.  As I was getting ready to leave the house, Wayland texted me and said he would meet me at the doctors.  Dr. Edwards (whom I absolutely LOVE) checked Jake out--thoroughly.  He new instanstly what it was.  He said to us, "I think this lump that I'm feeling is his liver."   He was so calm.  He said it could be that he's just backed up, but I feel like we need to have an ultra sound done.  He then went on and said, "I think that it should be done tonight to give you guys a peace of mind."  The only place that was open to do an ultra sound was Primary Childrens.  Dr. Edwards set the apt. up for us and then we were off.   I called Heather, who took Brielle to piano,  and told her what was happening.  She kept Brielle with her.  Zach and Aubrey came with us.  I became a little more anxious (as I'm writing this I'm getting anxious). 

We sat in the waiting room too long.  Zach and Aubrey were occupied playing the Xbox and coloring.  I finally took Jake back to get the ultra sound done.  Wayland stayed with the other two in the waiting room.   The ultrasound technician was taking way too long.  I sat and held Jakes hand and knew something was wrong.  She kept the ultrasound wand on one area way too long and then kept going back to that area.  I think we were in there for an hour.  She said that she would have the radiologist look at the picures.  She then told me that I could go get Wayland and the kids and bring them back.  As Wayland and I walked back to the room together, I looked at him and said, "Somethings wrong."  We waited for another 15 min., the ultrasound tech came back in and said that she needed a few more pictures.  Twenty min. later she finished up.  She took them back to the radiologist and said that he would come in to talk to us.  I'm not sure how long it took him to get back with us but it was an eternity.  I was pacing, my stomach in knots.  My hands were shaking.  Then the radiologist walked into the room.  He said, "I think its best if your children wait in the waiting room with the nurse."  Again, my heart sunk, dred came.  The nurse took Zach and Aubrey to another room.  The radiologist shut the door and then had Wayland and I sit down.  I was holding Jake.  He said that they had found a large mass on Jakes right kidney.  He said that it was cancerous.  His left kidney looked great; which is good because he can survive on one kidney.  (Survive--a word of hope).  He had called Dr. Jensen, an oncologist, to come to the hospital to have a chat with us.  I'm not sure how to describe the feelings that I felt at this time.  My heart hurt so much I wanted to scream.  I was trembling. I was scared to death.  I couldn't let go of Jake.  I couldn't believe this was happening.  I was in shock.  My heart hurt.  As I looked at Jake, and he was just smiling and laughing, it felt like someone reached in my chest stomped on my heart and put it back.  I didn't know what to do. 

The radiologist took us and the kids to another room.  He let Zach, Aubrey, and Jake each choose a toy.  Zach chose playdough; Aubrey chose a barbie, and I think Jake got some cars.  Then some other workers, known as child life specialists, took our kids into a room where they let them play with their new toys.  They also got them something to eat--it was 8:30 and we hadn't had dinner yet.  Wayland and I were led in a different direction where we could better deal with the news that we had just been told.  This is were Wayland broke down.  He had been strong up to that point.  We made some phone calls--I called my mom to tell her the news.  I also called my sister.  My dear sweet sister dropped everything that night and went to get Brielle from her friends and took her to our home and stayed with her until we could get home.  Wayland got a hold of my sweet sister-in-law, Keri and brother-in-law, Matt.  We talked to the oncologist.  She told us that a dr. would get a hold of us tomorrow and that most likely we would be back up here tomorrow.  Keri and Matt met us at the hospital.  We followed them to their house that night.  Wayland and Matt gave Jake a Priesthood Blessing.  This is were I felt my first peaceful moment (and it was a short lived moment), but I clung to it.  We then had to go back to the pediatritions office in PG to get another urine sample that night to make sure their was not an infection.  We were finally able to head home.  Zach and Aubrey stayed the night with Matt and Keri.   

As most can assume, I didn't sleep that night (Oct. 14th).  Jake slept with Wayland and I.  I couldn't let him go.  I sat and held his tiny hand in mine.  I wrapped my arms around him--I couldn't let him go.  I sobbed.  I cried and cried.  Pain filled my soul.  I seriously thought my heart was going to burst from the sorrow I was feeling. At this time we were unclear of his diagnosis.  Everything ran through my mind--Would I get to see him go to Kindergarten?  Will we get to go camping again as a whole family?  How long does he have?  I prayed all night for Heavenly Father to let him live.  Please don't take him from us.  I couldn't breathe.  My mind went to dark places--as it has several times since that night. 

My parents dropped everything to come and stay with our other kids.  We weren't sure of the plan.  We had to be at the hospital on Wednesday, Oct. 15th,  by 11:00.  My sister came over to be with Brielle until my parents could get there.   Matt and Keri were going to bring Zach and Aubrey back this day as well.

Wayland, Jake, and I headed to the hospital.  We had packed a small bag with pj's just in case we might have to stay over.  The original plan was, Jake would come up, get blood drawn, get a CT scan, and then we could go home until Friday.  Haha nothing goes according to plan.  He had to get an IV for the CT scan.  He hated it (do you blame him--they are horrible!)  When they poked the IV needle in his little wrist, they needed to get his blood so they let it drip from the IV needle (and I mean drip) into the small canisters.  We had to hold him down, he was screaming!  We sat in the cancer clinic FOREVER!  We had nurses after nurses come in and talk to us.  We had doctors upon doctors come in as well.  Through this process, the nurses were checking his vitals.  His blood pressure was high.  He then started in with a fever.  He couldn't eat because they had to put him under for the CT scan.  The day dragged on.  I was an emotional wreck-to say the least.  Finally we went for the CT scan; which gave the doctors a better look at the tumor and the size so that they could come up with a plan.
They took us to a recovery area where he could come out of his anesthesia.   They had a blood pressure cuff on him, constantly taking his blood pressure.  It continued to rise.  The nurses in the recovery area were concerned.  They called the doctors and a doctor (can't remember who) came to tell us that he would have to be admitted.  We can't send him home with his blood pressure so high.  It was a relief in a way because I knew they would take care of him.  I was saddened though because my heart ached for my other children.  I felt like I needed to comfort them and let them know everything would be fine (even though I was unsure of this myself). 

Once we were admitted, Dr. Barnhart, Jake's surgeon, came in to tell us what he knew up to this point.  (Earlier this day and from the look of the ultra sound they had said it was stage II, they thought it was a Wilms tumor, and that they could probably resect it without doing a biopsy first --which was good).  Dr. Barnhart came in and showed us the CT scans.  He then told us that the tumor was larger then they had thought and that it was pressing up against major blood vessels and could possibly be in some lymph nodes.  They would need to do a biopsy first to see exactly what type of tumor they were dealing with followed by chemo and then resection of the tumor.  This moved it to stage III.  The staging of the cancer scared me.  I started to wonder why I didn't catch this sooner. Why couldn't I have seen this before now.  I felt like this was my fault.  If only I had caught this a few weeks before, they could have done the resection right off.  Wayland, who is my rock, who can talk me down from a ledge, reasoned with me that it was not my fault.  I said a prayer to help me understand.  I had said several prayers up to this point.  A second peace came to me.  I felt an overwhelming love from my Heavenly Father and my Savior Jesus Christ.   In my mind came the thought, Heavenly Father has a plan.  I knew that this was His will.  I could either turn to Him or turn away from Him.  Either way, we had to go through this.  I needed Him.  I need HIM!

We had to stay a week in the hospital.  Friday, Oct. 17th, Jake went in for his biopsy and port placement.  Sat. he was doing ok, not the best.  Sunday morning, he wasn't doing good at all.  Wayland had gone to Sacrament meeting and wasn't there when all this happened.  Jake's heart was racing, his blood pressure was really high, his red blood counts were low.  The nurses were concerned.  My brother Shane and my sister-in-law Melody were with me at this time.  My brother's a doctor and knew what lingo they were speaking and could interpret what the doctors and nurses were saying.  Dr. Jensen, our oncologist, came in to tell me that they thought it best that Jake be moved to ICU for monitoring.  She said it's just a precautionary measure.  Which Shane reassured that it was.  My heart ached and I couldn't help but feel panic.   The nurses weren't moving slow either.  There was a quicker move with every step they took.  Again, a dredful feeling came as they rolled my little boys bed out of the comfort of his hospital room, to move him down to ICU.   I was full of anxiety (did not have an anxiety attack, though).  They had to run test after test on him.  He was hooked up to all sorts of monitors.  With each test came a higher anxiety.  With each result came peace.  All I could do was stand helpless by his bedside as I watched him suffer.  He was in pain.  They tried to keep it under control, but he was in pain.  Again, I found myself pleading to my Father in Heaven for peace to know everything will be alright.  All the tests they ran on him (two being for his heart) came back just fine.  The doctors said since we know that everything else is ok with him we can now give him stronger blood pressure medicine.  Jake had to stay the night in the ICU.  In the ICU, a nurse has to stay in the room at all times.  It happened to be a male nurse.  ICU had one little tiny couch that would barely fit one person.  We decided it best for Wayland to stay with Jake.  PCH has a Ronald McDonald place on the third floor where there are rooms for parents to stay.  There are only four or five rooms.  Because ICU parents get first dibs, I was able to get a room there and stay.  That night I decided that I needed to thank my Heavenly Father for the many prayers He had answered.  So I decided that I wasn't going to ask for anything at all in my prayer to Him, just thank Him.  The next morning Jake's blood pressure had stabalized and we could go back to our room on the 4th floor.  I've never been so thankful for a hospital room in all my life :)!   This week in the hospital they gave us so much information I thought my brain would pop!  I also felt like I understood everything they told us as well.  I really started getting irritated when the 4th doctor entered our room to tell us the exact same thing as the 1st doctor.  Everytime the door opened and a new doctor or nurse entered my anxiety level rose.  I finally asked them, "Why do doctors keep coming in and telling us the same things over and over?  When you have new info. then tell us!"  They said alot of parents go in shock and that they have to repeat themselves so they know that parents  get the info.  I think it's lack of communication!

Wednesday, Oct. 23rd, they gave us the OK to come home.  We knew that morning that we could go home, but it took all day before we could actually leave.  I was scared to death to take him home without constant monitoring of his blood pressure.  They left his port needle in place and told us that he would need to be hooked up to an IV every night for extra fluid to flush out his kidney--more anxiety.  They had set up a home health nurse to come to our home that night and show us what we needed to do to hook him up to his IV.  I was scared.  I didn't have the comfort of calling in a nurse when needed.  The responsibility was on my shoulders.  We were finally able to leave the hospital at 6 pm.  Well a funny thing happened (at the time was not funny at all),  earlier in the week, Wayland had given my parents Jake's carseat for Aubrey to ride in (instead of her booster seat).  On his defense, I had switched their carseats the month before--Aubrey use to ride in Jakes carseat.  Out of habit he had given Jakes carseat to my parents who were at our house in Saratoga Springs.  We didn't have a carseat to take Jake home in.  We had to go back into the Hospital and back into our room.  Wayland had called Matt to see if he could run by Walmart to buy one.  Matt and Keri live in Salt Lake, thank-goodness.  At around 7:00, we finally left the hospital.  As we get out to our car, Matt brings us the new carseat.  It was sooo funny.  He pulled out this bright, flowery pink carseat, just for Jake.  It was good because it lightened my mood.  I think it was a little help from above again to let me know everything would be ok.  I can't remember why but both of our vehicles were at the hospital.  So I took Jake home in the burb and Wayland drove the Jeep, following behind me.

I was listening to a church CD that our old Young Women's Pres. made each one of the girls and leaders when I was in YW.   There was this song written by Hilary Weeks--not sure the title, but I think it's called "He'll Carry You".  Here is a post to the song--http://www.youtube.com/watch?v=HCVT88Dz_CM&feature=player_detailpage!  Every. single. word. of. this. song. was. written. for. me (as I'm sure we all feel that)!  I was listening to this song--which had me in tears--as I pulled into our neighborhood.  Some people from our neighborhood had made signs for our sweet Jake.  I felt so much love. Love that I needed to feel.  Tears were streaming down my face and again I knew all would be well.  I could do this.  Heavenly Father will help me through this.  At this moment, I knew the importance of being Gods hands on this earth.  We have witnessed angels among us time and time again  as we have gone through this trial.   People have given so much of their time and efforts on our behalf.  We have felt your prayers, your thoughts for our family.  We have felt those who have fasted on Jakes behalf.  You have helped carry our heavy load.  My mother said that we live in such a wonderful neighborhood--people were constantly checking on how we were doing and were so willing to help.  We felt like we gained weight from all the wonderful meals that were brought to us.

We have witnessed so many miracles.  Our oncologist told us that a Wilms tumor responds really well to chemo because it is considered a soft tumor.  It can also rupture very easy and has told us time and time again that Jake needed to be careful so as not to rupture it.  Back in October he fell on the nerf gun on the hard kitchen floor on the side where the tumor was.  It didn't rupture!!!  He was being watched over.  My hubby, my father-in-law, and my dad gave Jake a priesthood blessing the night before his second surgery.  Every word spoken in that blessing happended in the hospital.  Everything went according to the plan.  They couldn't have asked for a better scenario.  His recovery went smoothly, no complications at all.  I was so much more relaxed the second time and felt I could handle it.  We have felt the Lord's hand in our lives.  We feel so blessed! 

Our family has been the biggest support!  I couldn't have asked for better!  My mom and dad dropped their lives and came to our rescue.  They stayed with our kids.  They have come up weekly to watch them so I can take Jake into his weekly chemo treatments (no siblings are allowed in the cancer clinic).  They are their to listen to me cry and cry again!  I LOVE them with all my heart!
My mother-in-law and father-in-law have been here for us as well.  They too came to our rescue.  They have watched our kids.  They went to the hospital with us when Jake had his second surgery and calmed our fears.   I love them too with all my heart!  Both parents were a huge support during radiation week, both willing to stay with our kids--taking shifts. 

My sister--well she has been there from the beginning and I mean for the last 37 years of my life.  She has been my best friend through thick and thin.  She listens and I mean listens to me hours upon hours.  I call her my therapist!  I love her.  She has been such a support and her willingness to watch my kids whenever is a huge blessing.  There is a reason we live so close to each other!!!  Heavenly Father knew we needed each other and thus we are sisters!

My sister-in-law Michelle--she too has been there for us!  She has brought meals, been willing to watch our kids, has taken my kids to all their places they needed to go.  She did a "Man of Steel" boutique for us; helping to raise money for us.  WOW!  Words can't express the gratitude we feel.  Her neighbor, Heather Johnson, put together a neighborhood Christmas caroling party (not sure what to call it) for us.  A bunch of our neighbors and Michelle's neighbors came to our house, sang some Christmas Carols--one being Silent Night, and gave us a huge gift that we will never ever be able to repay!  Tears rolled down my face as I heard them sing Silent Night.  I held Jake and it was truly amazing!  I love you all!!

My counselors in the primary are another bunch of wonderful women in my life.  They have taken over all the responsibilities.  I dropped off the face of the earth at a very crucial time in primary--a week before the primary program.  They took right over and have done every since.  They are amazing ladies.  I am so thankful for them.  They have brought me dinner and have been there for me.  I love them deeply!!!

There have been so many others that have touched our lives, uncles, aunts, cousins, siblings.  Know that we love all of you.  My brothers Shane and Bret and their families--I love so much!  Shane came to the hospital the day that I truly needed him there.  Bret came and visited and I just felt a deep love for him.  Family has brought on a whole new meaning in our lives.  We have received gifts and cards with words that mean so much.   Thank-you! 

From this experience, I've learned so much and I have come to realize that there was no other way that I could have learned the things I learned unless going through this.  I believe in the preexistence that Jake said he would go through this so that I could learn these necessary things.  I have had some really sacred spiritual experiences that I do not wish to share, but I do know God lives, that Jesus is our Savior and He has gone through everything that we have gone through and will go through, from the deepest sorrows, to the greatest pains, to the worst sins--He has suffered.  He knows--He knows!!!  I hope our story will strengthen others.  This has brought our little family so close.  Jakes cancer is 95% curable.  He will have chemo treatments until April.  He will have ultrasounds and CT scans every 3 months for the first year.  Then every six months for the next 2 years.  He will then go in yearly until 7 years.  After 7 years, he can go back to his regular doctor.  This will be something that will constantly be on our minds, for the rest of Jake's life.  I'm sure that with each CT scan that dredded feeling and anxiety will come.  We know that God has a plan for all of us and nothing is coincidence.  We know the importance of following the Spirit and to live so you can have the Spirit in your life.  We know what it truly means to accept God's will--no matter the outcome.  I have spent times crying on my knees, praying to my Father to give me the strength to accept His will no matter what--and though my heart was full of sorrow and heartache at the thought of losing Jake, I knew and believed in a loving Heavenly Father and believed in His plan for our family.  As a family we were reading in Mosiah about Alma and his people.  They were kept in bondage.  They prayed vocally to Heavenly Father for help to ease their burdens.  They were threatened that if they prayed again they would be killed.  So they poured out their hearts to the Lord--saying silent prayers.  Heavenly Father heard their prayers and though He did not take them out of bondage; He lightened their loads until the time was right to free them.  They carried their load happily and with thankful hearts.  He then showed them a way to free themselves--which they followed His counsel.  We have felt like Alma and his people.  He has lightened our load.  We can't believe that it is January already and we've gotten through all the hard stuff.  He has heard our plees.  Time has gone by so quickly.  That first week in the hospital seems forever ago.  When we were in the hospital that first week and they told us everything that we needed to do and the length of it--it seemed like a long road; one that I was dreading and scared to take.  Our load was lightened, He eased our burden, and soon life will get back to normal. 

I know this is long, but I feel like I need to share this one last thing.  December was a crazy month.  Jake had a CT scan and surgery the first week, spent five days in the hospital the second week and had another CT scan, and radiation the third week.  We let things slip that we shouldn't, one was our family scripture reading.  During Christmas break we started reading again and the second scripture we read is Mosiah 25:16.  It says, "And he did exhort the people of Limhi and his brethren, all those that had been delivered out of bondage, that they should remember that it was the Lord that did deliver them."  This spoke loudly to me.  We can not forget what the Lord has done for us.  I asked my kids, "What can we do to show the Lord that we will not forget him?"  They responded, "Going to church, saying our prayers, and reading our scriptures."  Yes thats it and we had let it slide.  So we made a new committment to be more faithful in our scripture study.  It has helped that our lives have calmed down.  The Lord understands and just sends these reminders to not forget Him!