In Case you were Wondering

In case you were wondering what it is Shad dreams about...

Shad is sleeping in our room right now, and a few nights ago as Trevor and I lay in bed whispering, we heard "(unintelligible muttering)...play my ipad...(more muttering)."

So, there you have it.  He loves that thing.  We are trying to limit playing time at home, but are not doing a great job of it as of yet.  We will keep working on it.  Thank you so much, again, to the person who bought it for him.

Kindness of Strangers

     Today Trevor had his last follow up eye appointment from his lasik surgery in August.  Shad slept in quite late this morning, so we gave him the choice of going with daddy and waiting at the park next to the doctor's office (where we like to sit and watch the airplanes take off), or stay home and take a nap.  His first choice was to stay home and play with his ipad, but once we told him the choices again, he chose the park.
     There is a playground at the park, but usually when we go we walk along the bay looking for dogs, boats, squirrels (or maybe they're chipmunks), and most importantly airplanes.  I didn't think anything of taking Shad in his wheelchair and walking around while we waited for Trevor.  Well, as soon as we were in the car and the whole way downtown, Shad talked about playing on the playground at the park.  Technically this shouldn't have been a problem, he "can" walk, but his legs are weak and he hasn't really walked for about a month.  He still refuses to walk at home, and even just trying to get him to stand up is a challenge.  He talked about climbing the big wall, playing on the slide, walking in the sand and on and on.  Trevor and I just said that if he wanted to play on the playground then he could.  We were both pretty sure once the time came for him to get out of his wheelchair, he wouldn't be as happy about it as he was in theory, but we didn't want to discourage him too much.
     We got to the park, and Trevor dropped us off.  I got Shad all situated in his wheelchair with his giraffe, and his blanket, and we started walking toward the park.  He continued on and on about playing on the playground, the closer we got the more worried I became.  There were a lot of families at the park.  In my mind this just meant more people to witness Shad's failure (and mine I felt).  I became more worried about what those people would think of me and my son, than I was about Shad actually being successful or not.  I began trying to talk Shad out of playing, reminding him how much fun it was to sit and watch for airplanes, or look at the water.  Nope, his desire could not be squelched.  I asked him several times if he was sure he wanted to play.  He answered each time with a more insistent yes than the time before.  I pushed him over to a less busy corner of the playground.  Asked him one final time if he was sure he wanted to get out, and then lifted him from the chair.  I stood him on the ground and he took a couple wobbly steps before he began screaming.  It broke my heart to see him in pain, and I immediately picked him up and held him in my arms.  That is when I looked around and saw all the other parents looking at us.  The pity in their eyes was almost more than I could bear.  They quickly turned away trying to pretend they hadn't noticed, but I felt like I knew what they were thinking.  I calmed Shad down and put him back in his wheelchair.  I wanted to hurry away from the onlookers, but he just wanted to sit and watch the other kids play.  That was hard for me too.  I knew that he wanted to be out there playing like those other kids, and I am still not sure exactly what was going through his mind, but I let him sit there watching for as long as he wanted.
     After a few minutes he said that he was ready to "walk" again, so I got up, and off we went.  The rest of the trip was great.  We saw 2 boats, some birds, some big guns (like they have on Navy ships), lots of airplanes and even a dog or two.  Shad was happy to be there waving to airplanes, and people on the boat.  Laughing at the birds swimming in the water (because birds are supposed to fly), and the lady throwing the ball for her dog who just wanted to lay in the shade.  People still stared at us, I still worried about what they were thinking, but I was also able to enjoy being at the park with my baby.
     As we were walking to where we were going to meet Trevor, I noticed a lady walking toward us with her dog.  She was looking at us, but the look in her eyes was different.  It wasn't pity or curiosity, but rather acceptance.  The dog was a big german shepherd, and I reminded him that we don't touch dogs we don't know without the owners permission.  As they got closer, the lady smiled at Shad and I, and gave Shad a wave.  She walked over and stooped right down to Shad's level.  She asked him if he liked dogs, and he answered with a resounding yes.  She asked if he wanted to pet her dog, and he said yes.  The dogs name was Bella, and I can't for the life of me remember the lady's.  She introduced herself, and then asked for our names.  Shad told her his, and I told her mine.  She chatted with Shad a little bit, and then started talking about Bella.  She said that Bella couldn't run around like she used to because her legs were tired (because she was old), but she still liked to go for walks.  Shad piped right up and said "Hey mommy, that's just like my legs.  My legs are tired too."  She continued to talk to him for awhile, and then said she hoped she saw us again soon.  She asked if we came and walked there often, and we told her not usually.  She said that she would still hope to see us again sometime walking there.  Bella gave Shad a few kisses and they were on their way.  I was so grateful that we crossed paths with her.  She will never know the impact of the 5 minutes that she took to talk to a stressed mother and her "different" child, but I will.

Happily Ever After

     I was in charge of the lesson in young womens today.  I have been reading through the lessons all week, and trying to figure out what to say.  I had a hard time putting any coherent thoughts together at all.  I just had too many things on my mind, and was not able to really focus on the task at hand.  Yesterday I spent several hours staring at the computer screen, reading the lessons, and the suggested resources over and over again.  Still nothing.  Finally Trevor convinced me walk away and come back to it later.  I decided that was probably the best idea, and went and relaxed with him for awhile before bed.  I was still thinking about the topics, and how to best present the information.  This morning I got up early, and got to work.  My mind was finally clear, and I was able to put all of my thoughts together (somewhat).
     One of the suggested resources for the lesson was a talk by Dieter F. Uchtdorf entitled You're Happily Ever After.  This was something that truly spoke to me right now.  I couldn't believe how close to home it really hit.  President Uchtdorf quotes the first page of the personal progress manual which reads "You are a beloved daughter of Heavenly Father, prepared to come to the earth at this particular time for a sacred and glorious purpose."  He goes on to say, "Isn't it remarkable to know that our eternal Heavenly Father knows you, hears you, watches over you, and loves you with an infinite love?"  If there is anything that I have truly learned from this trial so far, it is that Heavenly Father does know each of us, and that he watches over us no matter what is going on in our lives.  I know that even though we have hard times, he does love each and every one of us with a love which is almost beyond comprehension to our mortal selves.
     I have heard it said that there is no way that God loves us.  If he truly loved us why would he give an innocent 3 year old boy cancer.  Why does he allow people to suffer such great pain.  If he really loved us this wouldn't happen.  If I am being perfectly honest there have been moments when I have wondered some of these same things.  In his talk President Uchtdorf goes on to say "...they all had to experience great adversity.  Why must all experience sadness and tragedy? ... The scriptures tell us there must be opposition in all things, for without it we could not discern the sweet from the bitter ... adversity teaches us things we cannot learn otherwise.  Adversity helps to develop a depth of character that comes in no other way.  Our loving Heavenly Father has set us in a world filled with challenges and trials so that we, through opposition, can learn wisdom, become stronger, and experience joy."  Our current adversity has already brought wisdom, strength and even joy.  The fact that we go through trials then, only reinforces my conviction that Heavenly Father loves us.  He wants us to become better, stronger, more faithful members of his church, and he will put things in our path that will help us to reach our true potential.
     One final quote from President Uchtdorf, "His love for you is so great that He has granted you this earthly life as a precious gift of 'once upon a time,' complete with your own true story of adventure, trial, and opportunities for greatness, nobility, courage, and love.  And, most glorious of all, He offers you a gift beyond price and comprehension.  Heavenly Father offers to you the greatest gift of all - eternal life - and the opportunity and infinite blessing of your own 'happily ever after.'"  It is comforting to know, that no matter what happens in this earthly life, we all have been blessed with the gift of eternal life, our own personal happily ever after.
     If you would like to read the rest of the talk go here.

Home Sweet Home

     After 2 weeks and a day we were finally able to come home from the hospital today.  Shad cried off and on from the time we found out about 10:30, until we actually were in the car driving away at about 1:30.  He didn't want to come home, and told us multiple times he would just stay at the hospital.  He of course had charmed all of the nurses, and they were more than willing to let him stay.  Ultimately though, we told him he had to come with us, and he did.  He was happy to be going home as soon as we got in the car.
     We spent the afternoon playing games, watching football, and of course playing with the new ipad.  I think that toy is going to be put away and only used for hospital visits.  Or at least extremely limited on the amount of time it is used.  After a while the girls decided to go shopping.  We went to Joann and then to Target and Sonic.  Paula and I hit up the flannel and Kevra got some holiday decorations.  I also go some new blades for my rotary cutter.  Guess I better get busy making some receiving blankets!
     When the girls got home, Trevor and I put Shad to bed which was a bit of a traumatic experience for all of us, but we survived, and he feel asleep quickly.  He had a busy day!

     On the cancer front, we will be going for a checkup next Thursday, and then most likely starting the next round of chemo the following week.  Shad handled the first one like a champ, and so far there haven't been many side effects.  He is still just his happy self (most of the time).  The port that he has has 2 pieces that hang on the outside of his skin.  One of them clotted on Wednesday, and so now only one of them is functioning.  The surgeon wanted to keep us at the hospital until Monday, and then go in and replace it, but the oncologist didn't want to do that because that is about the time that his counts will be dropping and he didn't want to risk an infection.  Next time Shad goes in for chemo he is going to take out the port he has now, and put in a different kind that is all under the skin.  When they want to use it they will numb the skin, and then stick a needle into the port.  Hopefully Shad will be okay with that one, it will be a lot easier for us to care for at home.

Breaking Out of Here (Hopefully)

    The doctors have all decided that Shad is ready to go home.  Shad and I are the only ones who aren't too sure about it.  I am ready to be at home, and be able to sleep with no nurses and doctor's coming in, in my own bed.  I am hoping Shad will be willing to do more once he is in the comfort of his own home.  He still has a lot of things going on though, and I am feeling a bit inadequate.  I will be shown how to do things, like checking his line each day, emptying his catheter, changing his dressing, getting his brace on and off etc, but it still just seems like a lot.  The nurses have taken such good care of him, and a part of me is terrified of doing something wrong.
     Shad says that he is never going home.  Apparently he has adapted to this lifestyle of lounging about watching tv all day, pushing a button and having someone come running, 3 large meals delivered right to your bed (usually things he gets to pick out).  He does not like his brace, and has been told that he will have to wear it more and more, especially after we get home.  He is not excited about that.  We are hoping for the best though, and hoping that once we get home he will change his tune a little bit.
     The proposed day is Friday.  Trevor's family will be here for Thanksgiving, so that will be nice to have people around.  It will also be good because Trevor will be off for 4 days, and it will give us time to both help Shad readjust to home life.  Hopefully everything continues to go well, and works out for that to happen.

Treatment

     Shad started chemo last night.  He is doing BEP chemo.  I will not go into the specifics of each drug here, but there are 4 different drugs he will be taking.  Each one comes with its own set of possible immediate and long term side effects.  He will lose his hair.  He will most likely feel nauseous.  It will, of course, affect his red and white blood cells as well as his platelets.  He will lose some of his hearing. How much exactly will not be known until he is done.  He may end up needing a hearing aid, or he may just lose sensitivity for high pitches.  He should not lose 100% of his hearing.  Those are the main ones.  There are of course others that could or could not happen, but we are choosing not to worry about those things unless they happen.  We feel like this is the best course of action, with the biggest possibility of remission.  He will have 4 courses of chemo.  Each course is 12 weeks long.  In those 12 weeks he will have 5 days of chemo, then 2 weeks off, then 5 days, then 2 weeks off and so on throughout the 12 weeks.
     He has had 2 days of the chemo at this point and is still doing really good.  He hasn't had any nausea so far, and is still eating normally which is really good.  Of course he will fell worse the longer it goes on.
     He had the xrays yesterday with his brace on to see if it will support his back enough for him to get up and move around.  We got the ok for him to get out of bed today, as long as he is wearing the brace.  We got to take him on a walk today with a wheelchair.  It was the first time that he had been outside since we came here last Thursday.  He was not to sure about it, but I think he eventually decided that it was ok.  I will post some pictures once I get them off the camera card.
 

It's the Little Things

     As Trevor and I have sat in hospital the past week, we have had a lot of time to reflect individually and together on all of the small miracles that have happened up to this point, that have made this situation so much better.  I definitely have more understanding of the fact that the Lord has a plan for each of us. Here is a list of some of the things that have happened and how we are looking at them as blessings.

1. Hawaii - I can not imagine what it would be like if we were in Hawaii right now.  I am sure that the ward there would have been supportive, but having both of our families so far away would have been really hard.  There is something comforting in knowing that no matter what theycan be here in less than 6 hours.
2. Infertility - Lot's of people know that Trevor and I have been trying to get pregnant for about 2 years. I have been to some fertility specialists (one in AZ and one here) who have run some tests and couldn't really finds something wrong.  During this time I wanted to have another child so badly, but at the same time I felt so much peace that things would work out the way they were supposed to.  Now I think about how much more difficult it would be right now if we had another child to worry about.  Not having any other kids has made it so easy for Trevor and I to spend the necessary time at the hospital, together as a family.
3. One phone with AT&T - A couple months ago when Trevor's phone was no longer under contract he unlocked it and switched over to T-Mobile.  It was a lot cheaper, and we kind of wished that we could switch my phone over as well.  Now that we are at the hospital we are glad that I still have AT&T because I get exceptional service here.  Trevor's phone is very spotty, and it is hard to send or receive calls or messages.
4. ASTAC school - On the way home from Hawaii this summer Trevor's chief was talking to him and   the guy who was sitting ASTAC about an aviation term.  The other guy didn't know it, so Trevor jumped in and answered.  The chief was impressed and said they were going to send him to ASTAC school.  Everything fell into place really quickly and he started at the beginning of October.  This was lucky because he got to miss a month long undereway, which lasted pretty much from the time Shad got sick until the time that we went into the Emergency Room.  I am so glad that Trevor was here for all of that, I am also glad he is still in the school 'til December because he has really good hours, no duty, and of course weekends and holidays off.  (very basically an ASTAC's job is to control the helicopters from the ship)
5. Tricare - I think this one is more for me.  I have never been 100% sold on the idea of Trevor joining the Navy, not before he did it or after.  I definitely see know what a great blessing it is that he did. Looking at a long term hospital stay is much less stressful when you aren't having to worry about how to pay for all or part of that stay.

I will most likely be coming back and adding to this list, but these are the things that I can think of right now.

Good(ish) News

So, on Monday morning the oncologist (Dr. Pene) came in and talked to Trevor and I for a while.  I felt like he didn't think we understood the gravity of what was going on.  We were feeling very calm, and at peace thanks to all of the prayers being offered up for Shadrach and us.  We were staying hopefully optimistic, and not stressing about what the results would be.  Sure it was in the back of our minds, but we were not focusing on it.  He told us that there was a very low probability that Shad would make it through treatment and be 100% cured.  He was direct, and told us about how chemo works, and what he thought treatment might look like.  There is still a little bit of cancer that is around his spine, not a mass, but it still shows a little bit in the pictures.  He told us if it was the kind he thought it was then he would probably start radiation on the spine immediately as well as chemo.  They can not remove the mass in his pelvic area because it is too large, and they are worried about damaging other things.  Also, tumors are extremely bloody (at least these ones) and the risk of too much blood loss was too great. After chemo they would reassess the pelvic mass to see if it had shrunk enough for surgery.  Shad also has areas in his lungs, and 2 small areas on his liver.  They will not operate on the lungs at all, because there is too much there to remove.  Radiation might be necessary in other areas after the chemo.  He still couldn't be specific and wasn't 100% sure about treatment because we were still waiting for the pathology results.

     During the conversation, he told us that we could also choose to not do any treatment at all and just do what we could to make him comfortable for whatever time he had left.  That is the point that I really began to cry.  I wish that no parent ever had to hear those words.  All of the thoughts and emotions that went through my mind at that point are indescribable.  I think it is something that you have to experience to fully understand.  I don't know how any parent makes that decision.  I guess that is where prayer, faith, and inspiration come in to play.  Trevor and I talked right after the Dr. left, and both definitely agreed that we would at least start the chemo and see how his cancer responded.  At that point we would make further decisions.  Neither one of us was comfortable doing nothing at all.  

     Dr. Pene also recommended that Trevor apply for a humanitarian transfer.  This would mean that he would transfer from the ship to a shore duty.  The reason for this is that he would then not have to leave on his upcoming deployment, but would be able to stay here to support Shad and I.  That was good news, I didn't even know something like that was an option.

     Shad's friend Lily came to visit with her parents that morning as well.  Her dad is one of our home teachers, and so they all came for a visit.  Shad loved watching her bounce around and around, they made animal sounds together, and then they played a couple of games before she left.  

     That afternoon Shad took a nap and I went to Joann.  I wanted a project that I could work on that would keep me busy for quite a while because we were going to be here for so long.  I ended up getting a cross stitch book to use to make a baby afghan.  Hopefully it turns out nicely, even though I have no idea what I will do with it once it is finished.  I brought back some food for Trevor and I, and we all pretty much just relaxed for the rest of the day.

     Tuesday Trevor went to school and Shad and I hung out in the morning.  We watched some cartoons, and worked on eating his breakfast.  Shortly after he finished his breakfast the Dr. came in and said they were going to do his bone scan that afternoon.  He was not allowed to eat or drink anything from that point on until after the scan.  The nurse came in to put him on some iv fluid, and he immediately began complaining that it was hurting.  I asked them to check it after a few minutes, and they quickly looked and said it was fine.  A little while later he began complaining again, they checked it and his hand was really, really puffy.  They switched the fluid to the iv in his other hand and he seemed to be in less pain.

     Right after that the people to do his back brace came.  They had to create a plaster mold that they then took back to their lab and used to create the hard plastic brace.  It was quite the adventure, but we got it done.  First, they wrapped him up tightly in this stretchy material.  Then, they put plaster under him and had him lay still while they wrapped him up even more tightly and let the plaster harden.  Then they did the top portion.  The lady that was doing it thought it would be funny if we drew some muscles on his abdomen while we waited for it to be completely set.

     At about 2:30 a bunch of doctors flooded our room and began getting Shad ready for the bone scan. They had to completely sedate him, and then put in a breathing tube (as a precautionary measure).  They did the first round of drugs to put him to sleep and he was still wide awake talking to Trevor and I.  They did a second round, and then they had Trevor and I leave because we didn't want to watch them put in the breathing tube.  Apparently after we left they gave him a different drug to help sedate him, at which point he finally went to sleep.  I think that shows that he is a fighter (or at least stubborn). They took him for the bone scan and the follow up MRI.  Trevor and I walked to the car, went and got something to eat, and then waited in our room for him to come back.  He came in with the breathing tube in, but was starting to wake up.  Some of the doctors wanted to keep him sedated and leave the tube in until today because he was having his line put in for the chemo.  Some of the doctors wanted to pull it out and put it back in for the surgery today.  Since they couldn't decided they let us make the decision.  I asked that they take it out because my parents and Jayce were coming that evening and I wanted him to be able to see and interact with them.  They said ok and pulled it out.

     My parents and Jayce got here a little bit after that.  They played some games with Shad, watched a couple movies (or parts of movies) on the ipad and then went home (to our house) for the evening.  Shad loved having them there, and I was glad we had made the decision to remove the tube.

     It was a long night for all of us that night.  First, they had to do a blood draw, but couldn't get his iv to draw back.  They ended up having to stick him and get the blood out that way.  He of course didn't like that much.  Shad was receiving iv fluids after midnight because he couldn't eat or drink until after the surgery this morning.  His line stopped working, so they had to remove his iv and put in a new one. They got the new one put in, but then they were worried that they had put it into an artery instead of a vein.  They had to do a blood test, and it came back showing that it might be in the artery.  Then they hooked up fluids that were designed for an arterial iv, plugged him into the monitor and watched for a wave.  There was nothing so they decided that it was good.  About 30 minutes later they came in to check it and decided it had infiltrated and they were going to have to pull it.  They convinced the Dr. to wait until they sedated Shad this morning, and then put one again.  Luckily the doctor okayed it because I really didn't want to have to watch them do another one.

    

     This morning we had people in and out to get consent for the various procedures they were going to do.  The brace lady also came with the brace and we had to get that tried on.  The urologist came in and talked about our options because Shad still wasn't able to pee on his own.  He has had the foley catheter in, but they were worried about infection and also about causing damage to his penis if it was in too long.  He thought that the best option was to do a catheter that goes in through his stomach into his bladder.  Of the options that was the least invasive combined with the least risk of infection.  We took Shad up to the surgery floor about 9:45.  The nurse that was going to be in there told me to wait in the waiting room and not to leave.  They would call or come get me when they were done.  I waited, and waited, and waited, and waited some more.  Eventually the Dr. that had done his line came out after finishing another surgery and saw me still sitting there.  He said that Shad had been done for quite some time, and that he was pretty sure he was down in his room.  He was nice enough to make some phone calls and found out that yes, he was in his room.  I was upset that he was down there by himself while we were upstairs waiting , but then realized what was done was done, and there wasn't really anything I could do about it at that point.

     When we got down to the room Dr. Pene came in and talked to us a bit.  He told us that the pathology reports had come back.  Shad has a germ cell tumor or yolk sac tumor.  He was pretty upbeat and positive and thinks that for right now chemotherapy is the best course.  We have a meeting with him tomorrow morning to more specifically go over the specific treatment plan.  I asked him what the chances of being cured were and he said for the 3-5 year remission rate it is about 70%.  Since Shad it is at a stage 4 is it at the lower end of the 70's.  Of all the types of cancer this could be this is apparently the best one.  We were already pretty upbeat, but it is nice to know that the Dr. is also pretty positive as well.  I will be sure to post again tomorrow with more details about the treatment plan. 

     The attending for the floor came in before she left for the day just to check in with us.  She said that Dr Pene and the other oncologist were both very enthusiastic about the results/diagnosis.  She said when an oncologist is happy about something you know it must be pretty good.  That was really nice to hear as well.

     Once again we are so grateful for all of your prayers and support.  We definitely know that the Lord is mindful of us, and Shad, and that ultimately whatever happens will be ok.  

Family Photos

     I already wrote a blog about how happy I was with the results of our family portrait session, but I have to say that these photos have taken on a whole new meaning to me in light of the recent news we have received.  Interestingly enough I had felt like I should write an email to the lady (Kristine) who took the photos for us, and let her know what we were going through and how much I appreciated them.  I hadn't done it yet because I couldn't think of the right things to say, and a part of me felt like it would be kind of weird to do.  Yesterday I was talking to my mom, and she told me that she had been having dreams about this lady and felt like maybe she needed to let her know what was going on.  I was a bit shocked to say the least, but let her know that it would be fine.  In fact I was glad to have her do it for me.  The following is the email that she wrote.  She expressed my exact thoughts and feelings better than I ever could have.

Kristine,

     My name is Dianne Johnson and I met you recently when you took family photos of my daughter Jessica, her husband, Trevor and their son, Shad.  Perhaps you recall that Jessica told you that Shad had not been feeling well for the few days prior to the photo shoot.  Well, after the shoot he rapidly got worse and on this past Thursday Jessica took him to the emergency room.  There they discovered that he had several tumors, one in his pelvic area and one on his spine.  He had to undergo emergency surgery to remove the tumor on his spine because it was seriously affecting his mobility.  He came through the surgery well, for which we are grateful, but for the time being is bed ridden.  He has a very long road of chemotherapy and radiation ahead of him along with several other problems and more surgeries.  We have a lot of faith and support from family and friends and we are optimistically hopeful, but no one really knows what the future holds for their little family.      

     Jessica has mentioned to me how grateful she is that she had their family pictures taken when she did.  I just wanted to let you know how thankful we all are that you were willing to use your talent to capture the love that this family has for each other so beautifully.  The photos are truly wonderful and mean so much more to us now than they did a week ago.  Never again will this family be as innocent and carefree as you captured them being on the beach such a short time ago.  Thank you for helping us preserve a moment that has quickly fled.  We hope that you will continue to use your gift to bless the lives of other families as you have blessed ours.

Thanks again,

Dianne

All images below copyright of Sisters Photography.

An Update on Shad

The backstory (written 11-8-12)

    Shad has been complaining of foot pain since the beginning of October.  It would come and go and some moments would be worse than others.  He didn't like to walk, but we could still convince him to do it sometimes.  I took him to the Dr. and she said he was fine. Granted he acted fine by the time we finally were seen.   I took him home thinking that was weird, but not too worried. A few days later he was still really whiny and crying about his foot hurting, so I took him back to the Dr. She said that it looked like maybe his foot was a little swollen so she ordered some X-rays of his foot, ankle and tib fib.  A few days later she called saying there was an abnormality and that she wanted us to see an orthopedist for further investigation. We scheduled the appointment through Balboa (the military hospital)  and came in the next week.   The orthopedist ordered an X-ray of his knee. Focused in on the abnormal area and declared everything within an ok ("normal") range. I left that appointment slightly frustrated and discouraged. I waited a bit to see what would happen with his pain etc.    
     Not too long after that he started digressing. He was weak. He was walking a bit hunched over kind of like an old man. He just wanted to lay on the couch all day.  He looked forward to nap time and would nap everyday for several hours while still sleeping at night as well.  On Tuesday at preschool he complained of leg pain and weakness. I picked him up early after the teacher called me saying he didn't seem like himself. From that day forward all he wanted to do was sit/lay on the couch.  He had some constipation issues and then on Thursday he started complaining of pain when peeing. 
     I took him to the doctor on Friday, and they did a urine test. We had to see a different doctor because our regular pediatrician was not there that day.  She really seemed like she couldn't care less and told us just to go back to the orthopedist. I tried to explain that I didn't think it was really a leg or foot issue, but that the foot pain was a side effect of something more serious. She really didn't seem like she was listening, and sent us home. From the minute I left I was kicking myself for not making her listen to me. I was worried something was wrong and am still mad that I didn't trust my instincts more. We spent the weekend witha pretty miserable boy, but he did perk up a bit for the family pics Saturday night. I will forever be grateful that we had those taken.  
     Sunday at church we had stake conference. Shad spent the whole 2 hours sitting quietly being held by either Trevor or I.  It was so not like him and I knew that something else had to be going on. I decided then and there that I was going to the doctor on Monday and I was going to demand that something else be done. I would make them understand the seriousness of the situation. 
     I got the appointment  scheduled and my mom went with me. By this point Shad was barely eating or drinking. When the Dr.  (Shad's regular pediatrician) came in and started asking questions I immediately burst into tears. The stress, worry, and frustration were all getting to me not to mention some pretty crazy side effects from a medication I was taking. I started telling the doctor what had been going on through my sobs, and looked over to see my mom crying as well.  The Dr. finally seemed to take me somewhat seriously, and ordered some blood work to do immediately. She decided she also wanted an abdominal ct and possibly an MRI of his back. She would work on getting those scheduled. We went downstairs and got the blood work done. Shad was of course not too enthused but he did really well considering. Tuesday and Wednesday night he barely slept. He also gave up almost all together on eating and drinking. 

The Emergency Room (written 11-8-12)

     This morning I knew that he was really not well and I was either going to get some more immediate answers from his Dr. or take him to the ER. I was on the doorstep of the Drs office the minute they opened. Of course the Dr. didn't get in for another hour so I decided just to take him to the ER.  We got there about 845 and luckily seemed to barely beat the rush and got in pretty quickly. The first Dr. (student/resident/inexperienced) that came in to talk to us didn't seem too concerned. I kept pushing that he was really sick. He still didn't want to drink at all. Another Dr. came around and they ordered an abdominal X-ray and we went for that pretty quickly. 

after the ultrasound, he got lots of stickers this day

After a bit the Dr. said he needed to go potty for a urine sample. I took him and he went about 2 drops. They decided they needed to cath him after looking at the X-ray because his bladder was showing up as really full.  The nurse did that and he output about 400 cc.  Then they had him go for an abdominal ultrasound. He had just fallen asleep so he was not too enthused about that. When we got back they put in an Iv for fluids. Luckily daddy got there right about the same time. 

They said he still had a full bladder so they put in a foley catheter. He ended up going to get an MRI of his abdomen at that point. By then I knew there was something wrong because if they weren't worried about something they wouldn't be doing all the same type of tests. He was amazing during the MRI, they didn't have to sedate him and he held super still. The machine of course broke down halfway through so they had to wait for it to reboot. That took a bit and he started getting restless. Luckily they had let Trevor go in with him from the beginning, and they came and got me when the machine broke to help keep him relaxed. They said they would have the images down within the hour.  We waited and they started telling us things that let us know it was pretty serious. For example that we were being transferred to Balboa via ambulance.  Sign this, do this. 

A Diagnosis (written 11-8-12)

The  doctor came in and told us he wanted to talk somewhere more private. He took us one at a time. As soon as he said that I started tearing up. I knew that it was bad.  Trevor went first and came back looking ok, but a little sad. I was next. He told me there was a mass and based on his blood levels they were pretty sure it was cancer.  he gave a name, but I can't remember it. The ambulance came soon after that and Shad and I were on our way.  Trevor drove one of the cars over.  So, now we wait. 

Balboa (11-8-12)

They have come in and tested his reflexes and done his vitals etc. several times. Casey and Kevin came for a bit and helped with a blessing/brightened the mood/picked up the second car. After that shad went to sleep, trev left and I sat here with my thoughts. I have had a fear/feeling from almost the beginning this was cancer related. I kinda wish I had pushed harder sooner, but at the same time try to convince myself it is okay.  We called our parents and told them the basics/we will know more tomorrow, but until we know more we will wait.

watching kung fu panda 2 on his awesome touch screen tv

Friday 5:30 am

The nurse came in and took Shad to another room to draw some blood. They didn't want to do it in his room because they want that to be his safe place where he won't have any "ouchies". He was not happy about getting woken up, being moved, and then having them hold him down while he got pricked. Once the needle was in he calmed down some and wanted to see. He watched the blood come out and asked some questions about why they were taking it.  The nurse and I brought him back to bed and he was able to fall back to sleep pretty easily. 

8:00 am

     The doctor just came in and gave me a bit more information. They showed that there is a mass in his abdomen. It is down near his bladder and looks like it has possibly spread to some other organs like the liver and possibly more.  It is pushing on his spinal column which probably explains the leg/foot pain.  They are having a meeting of the minds as we speak and are deciding on a plan of action. They will most likely sedate him and do more imaging to get the clearest pictures possible. They will be doing more than before to try to see exactly what is going on, and where the growth is.  After that they will meet again, and then most likely do surgery to take a piece of the mass and test it to figure out exactly what it is. Depending how long pathology takes we will have more answers tonight or tomorrow. Once they know exactly what is going on they will discuss/decide the plan of action.

The rest of the story (for now) written 11-11-12

     They ended up doing the second MRI here at Balboa.  We went up with Shad, they started to get him prepped and then they gave him the medicine to sedate him.  It was crazy how fast he fell asleep.  We gave him a kiss and went down to the room to wait.  They said that it would be at least 2 hours before they were done.  Casey came and brought some lunch, and she, Trevor and I just hung out and talked while we waited.  After a little while the pediatric neurosurgeon came in and talked to us.  He let us know that he had seen a "peek" of the images, and that he was going to need to do emergency surgery.  There was a mass in Shad's back that pretty much destroyed the bone of the L4.  The muscle was pretty much the only thing holding his back straight in one part.  They mass was also compressing his spinal cord, and was causing a loss of sensation in the feet.  He was pretty somber, and told us he couldn't promise that Shad would regain full function in his feet.  He told us about the surgery he was going to perform, and how it would be done.  He also let us know that because of the damage the mass had done to the spine, Shad would have to have rods inserted into his back (similar to a scoliosis patient), but that wouldn't be done until a later time.  As you can guess we were very concerned, but glad they had found it at just the right time to still be able to offer some hope.  The surgeon was great, and told us about his 4 kids at home.  It helped me to trust him with my child knowing that he was a father himself.  He also said that he was praying for the best outcome, which helped me to have more faith.  There were no students who would be present during the surgery.  He was going to be the man in charge.  After that shocking news we waited some more.  At about 2:30 they called letting us know that they had started the procedure.  They were back in the room by about 5:00.  Shad pulled through it really well, but did have some scary moments.  The tumor was really bloody, and he ended up losing almost all of his blood volume.  Thankfully they were of course prepared and were able to transfuse him, he ended up fine.

after his surgery

     We are so grateful that he is wiggling his toes, and is also able to move his legs.  He is not allowed to get up and walk around because of the surgery on his back, and his back being weak right now.  They are hoping they will be able to get a brace that he can use until the rod surgery.  During the removal they were able to get some samples for pathology to look at to diagnose exactly what kind of cancer it is.  There are 3 different types it could be and all are treated a little differently.  As soon as we know what kind of cancer it is they will outline a treatment plan, and we will know more.  Until then we wait.

feeling good enough to play some games today

showing the night nurse how to play a game on the ipad

     Shad is doing great, and being a real trooper.  He has loved all of the gifts that he has received, and the pictures from friends at church.  We are so grateful to our family, our ward family, and our friends for their combined efforts in the special fast for Shad today.  We could feel our spirits being lifted by your faith and prayers.  Thank you also for all the offers of help, we will be taking each of you up on them in one way or another, but it may not be right away.  I will try to update this blog as much as I can with new information as it comes in.  Thank you so much again.  We love and appreciate all of you.

enjoying the ipad mini he got (from someone who loves him, I will keep them anonymous on here)