So happy together....

Yesterday my youngest brother, Devin got married.  We are so happy for him and Tori.  They were sealed in the Draper Temple and then had a beautiful reception in Orem.

 Coleson got to be the greeter and have people sign rocks, he was looking good!

 Brynn loved touching 'Princess'Tori's dress.

 Brynn had so much fun running around with her cousin!

 

At the end of the night, Ammon was done and so were the other two, but it had been a wonderful day.

I'm My Brother's Best Friend...

A little over a year and half ago it was Ammon’s birthday and we posted the following blog post (Coleson's Gift), a copy from a journal entry really.  Last night for family night we read together the post and talked about how much we love each other, and that we are so glad to be together in a family.  When Ammon was first diagnosed his brother and sister clearly showed him so much love and concern, and that has continued through to today.  But with many things, unless you continue to positively focus on it or work on it, the strong feelings or concerns that are there at the beginning can become less intense as more immediate items, and usually less important, rise to take their place.  We don’t want the kids to treat every day the same as the first day they realized Ammon had cancer and how hard that would be for him and all of us, but we also don’t want their love and concern for each other that has been earned through this journey be forgotten or diminished.  For this reason, we try to do things with the kids on a regular basis that are a real support to Ammon in his continuing fight and also bring our family together now and for the eternities to come. 

For example, all the kids know when a chemo day has arrived, and that night and the following week everyone gives Ammon an individual monster hug and tells him how brave and courageous he was on those particularly difficult days.  Each night after family prayer we usually do a cheesy family cheer that the kids love, and probably half of those cheers rotate around another victorious day for Ammon. 

Last night after reading through that old blog post, Coleson couldn’t wait for the activity portion of family night, of which he was in charge.  Golf throughout the home was the chosen activity, and Coleson was going to be Ammon’s expert caddy.  With Summer supporting Ammon under his arms and walking him from golf swing to golf swing, Coleson made sure Ammon had a firm hold on the putter and avoided all the traps.  When Ammon’s final shot made it in the hole, everyone erupted in cheering, particularly Coleson and Brynn.  An initially surprised Ammon at the loud sound of the cheers quickly turned to an uncontrollable smiling Ammon, and that only increased the volume.  That smile was very gratifying to see, and Ammon couldn’t wait for the second round of golf.  The lesson for the night was immediate and recognized:  family time can be so much fun, particularly between siblings, it’s just a matter of how much love and attention you put into it.

We’ll keep trying to create for the kids those little reminders, as I’m sure there will come days again when taking a moment to play with a younger or older sibling might initially seem like the lowest of the fun choices, but when a little love and attention are applied it clearly becomes the best and most fun choice by far. 

Happy Mother's Day!

Ammon gave me the best Mother's day present today, he smiled and laughed.  I have not gotten him to laugh for months.  Then he smiled a full smile.  He does a lot of half, courtesy smiles, but this was a true full smile.  That's how I knew I might have a chance at a laugh if I said the right thing or maybe tickled his arm. 

I have been staying very busy caring for Ammon.  He is still having good days and bad days (too many bad days).  This week we went in for a sleep study.  I was a little hesitant  about going (I've already rescheduled twice) because he still has secretions that need to be suctioned periodically.  I wanted to be able to go and have them say, he's doing great and we can discontinue the oxygen.  I knew that wasn't going to happen because we have a monitor that beeps at me several times a night to tell me that he needs more oxygen or that his tube is not in his nose.  That was the best part of the study.  I didn't hear or see alarms the whole night! The respiratory therapist monitored all that--at 6 am I didn't want to leave,we were both sleeping so well. We won't know for a few weeks what the final results are, but his blood gas levels were good, so I think we will be able to formally be discharged from the bipap machine.  I am just used to being the one who monitors Ammon's equipment and needs, so I already stopped using it, but the doctors wouldn't give me the okay unless we did the overnight study.

I thought being on maintenance was supposed to be better, but I'm still waiting.  The week before last Ammon was throwing up, crying, in pain and I couldn't tell where, had no energy, fell asleep here and there, so then he would be up half the night too. I always pictured going through chemo would be like this, but it hasn't been this bad.  Most weeks we have just had the crying and sleeping problems. He did have steroids on top of his once a month chemo, but in April we did the same thing and it wasn't that bad.  Now on Thursdays I have to give him an oral chemo and so our weekend nights are horrible.  I don't see what all the celebration was about.  Maybe the doctors were excited because Ammon survived the first 6 months and so he has a better chance at surviving the rest?  I thought we were excited because he was going to finally start feeling better and not have to go in so often.  We still have had to go back every two weeks because of sicknesses.  I usually don't get frustrated, but I just want the smiles to last.  With the warmer weather, it does allow us to do a few normal things, if Ammon is having a good day.

After having a horrible Friday night,  Ammon was doing a little better on Saturday so we took him ice skating.  Finally a fun outing for him.  We joined Hope Kids which is an organization that has several events a month for families with kids who have a life threatening illness.  They hosted the event at the Ogden Ice Sheet where we could take him out on the ice in his wheelchair.  The cool part about it was that Ammon helped Coleson to ice skate.  Coleson pushed Ammon and that way he could stay up on his skates and at the same time do a service for Ammon.  It brought tears to my eyes thinking that Coleson could see something that Ammon did for him. 

Coleson had a great time making his first Pine Wood Derby car.  He won a few heats and made it to the top 6.  We figured he got about 4th place.  He was so excited.  Coleson gave me a cute paper flower basket that he made at school.  Each flower had a different chore written on the back that he would do for me throughout the week.  After bringing it to me he must have started feeling guilty because he brought me some more flowers which he had pulled out because he had recently already done those chores.

Brynn went to the dentist last week to have a cavity filled.  I didn't know how she would do since she gagged and wouldn't open her mouth well just for x-rays a few weeks before.  However, I know she can be extremely brave when it comes to shots, so we were going to try it without any nitrous gas.  As soon as the TV came on the ceiling, she was fine.  She did so good, we went ahead and filled the other cavity on the other side.  I could tell she was a little numb from how she talked, but I was so proud of her for not crying, holding still, etc.  I went to go pick up Ammon at a friend's house and ended up talking while Brynn went and played.  As I went to buckle her in her carseat, I realized she had blood around her mouth mixed with chocolate frosting and a huge chunk bitten out of her lip.  I knew I was supposed to watch for that, but after an hour had forgotten.  She's the type that bites her hang nails until they blood, so of course she would be the one to chew her lip off.  Ahhh! It swelled up about 3 times the size and it looked like a huge pouty lip.  The next morning it had turned from bright red to an ugly brown, white, yellow mass. So gross.  I think by the end of the week she was tired pf people staring and saying what happened or giving her a grossed out face.  Today, it just looks like a big scab, so it's going to be okay.  Ammon lost a tooth today and again, I was trying to monitor it but the next thing I know it's gone, he swolled it.  That might be a little tricky for the tooth fairy.

That pretty much sums up the Cheney household for last week.  I did want to write Happy Mother's Day to all of you.  Especially my mother and grandmother's who have richly blessed my life.

Angels, Changes, and Priority Lists...

It's been 6 months and a little under three weeks since Ammon was diagnosed with cancer. In looking back, I am amazed at what we have experienced and that we've made it this far. I mean that in a good way. I always knew Ammon would make it to this point. I always knew the rest of us, including his family, friends, and neighbors would make it as well. I guess at the beginning, despite the best assurances, I just wasn't able to picture this far down the path.

Like all significant challenges, cancer changes people, in eternal ways. I hope I've accepted all the good changes that come from these experiences, and paid less heed to the negatives. There is one change that I wanted to share with you about Ammon specifically. I usually hesitate to describe someone as special as Ammon by using a lot of can'ts, but the reality is that Ammon can't walk, or run, or talk the way you and I do. Because of these things, though Ammon has received so much love and attention throughout his life, there are still times when he is at the mercy of those around him to simply be noticed, loved, and played with. When times get really quiet and we are busy about doing things, instead of going outside to play with friends, Ammon can also get very quiet sitting in his wheelchair, laying on his bean bag, or just looking at the Christmas lights above his bed. I'm sure when it becomes unbearable, with effort, he'll give us a shout out as if to say, "I just need someone to be with me for a while." As parents, because Ammon simply can't run outside to play with his friends, we've thought often about Ammon's social well being and general happiness. One of the many miracles and changes that have happened through this cancer journey is that Ammon has found even more people to love, and that love him in return. People that aren't reluctant to knock on our door just to see Ammon and how he is doing. In many regards, Ammon's angels have multiplied and have come home. Allowing these additional people into Ammon's life, and ours, has been a very comforting and joyful change for this particular parent.

A story was told in the most recent General Conference of simply diving in to help those in need as if the individual were drowning, without asking for permission or uttering the common phrase "Please let me know if there is anything I can do." Sometimes, it takes a lot of courage and inspiration to jump from the edge of the water to rescue a suffering child of God. And sometimes, it takes a lot of courage and inspiration to see the rescuer coming and allow them to dive in and perform the miracle.

The people along the waters edge are really angels, sent to perform miracles and bring God's love. Yet how often have we lacked the courage or the spiritual insight to let them dive in and save us and our families. Sometimes, in years past, we occasionally have turned people away at the door, and haven’t allowed them to fulfill their calling or inspiration. We've been known to say (sometimes not out loud), “All is well…we got this…please don’t worry about us…and disregard the inspiration you thought to fulfill and the love and friendship you thought to kindle through your service…” It’s not with malice that we all turn anyone away, in fact, at times we might feel more correct in so doing, because surely this service was meant for others in an even greater need, we are simply being self-reliant both physically and spiritually…right? Perhaps at times by doing this we have discouraged the friend at our door, and made them question if they ever should have knocked, or if similarly prompted in the future if they should return and knock again.

It took some time, but we have learned through these cancer experiences to never turn away an angel, no matter the immediate circumstances. Sometimes, the house has been in disarray despite our best efforts, the laundry remains unfolded, the dinner dishes from the night before remain in the sink while the current night dinner remains uncooked, and our own physical appearances betray our exhaustion from another waking night with the unfulfilling promise of more to come. Knocks have even come at almost the precise moment when a day’s worth of food and medicine have painfully just come up or another chemo filled diaper has just exploded, and I’m sure that some of these people would have appreciated the turning away phrase, “All is well…we got this…” But we are so grateful for the immediate strong stomachs and determined hearts these particular people have been blessed with, and with little or no trepidation have literally jumped right in. Please don’t think these extreme events are the norm, and in fact this is usually so very far from the norm, but there have surely been times when the constant care and attention of a fragile loved one not only tops the priority list, he truly is the only item on the list.

It’s at these times we have learned that when there is an angelic knock at the door that you put the feelings of embarrassment at a messy home aside, and you refrain from saying aloud the confident self-reliant phrase “All is well…we got this...” and instead with the warmest smile you can muster you welcome them into your home.

Multiple times over these 6 months I have come home late in the evening from a full day at work, or arrived in the morning from a night at the hospital and found the lawn mowed and the edges trimmed, the house cleaned and a warm meal waiting, the children played with and ready for bed, and even the laundry perfectly folded and stacked ready to be put in the drawer. It’s at these times that I realize that miracles have been performed, and those performing the miracles are being blessed as only Heavenly Father can for the service they performed on His behalf. In every regard, for each of us, is it not the Savior patiently knocking at the door. I can’t imagine ever closing the door on Him, knowing that He has come to serve, to love, and to bless our family, and right before the door closes, quietly and rather reluctantly saying, “We got this…maybe another time would be better…”

Thank you again to each of Ammon's angels, particularly those whose who haven't been able to be with him in person, but have loved him through treasured thoughts and answered prayers. Cancer will forever be a muddy weary road to travel, but it's always easier to travel with friends. We just hope that if you ever find one of us knocking on your door that you don't turn us away despite any immediate circumstances, but instead let us come in so we can serve you in a way that you have so diligently served Ammon.

Happy Easter!

Our whole family made it to sacrament meeting at church today. It was so nice to be together and think about Christ's atonement and resurrection, as we are trying to heal and get back to some what normal. Coleson and I have had horrible coughs all week, so that's why I say we.


Ammon had chemo on Monday, had a few rough days, but tonight seems to be in better spirits. I have been praying all week that he would not catch what I had. I wore a mask and did my best to hand wash. I felt so bad just leaving him in his beanbag half the day, but he was healing too. So far he hasn't caught it. Brian was my hero this week and worked from home a few days to help. I am still very sleep deprived, but I'm hoping to catch up this week. Coleson said I ruined his spring break, like I could stop myself and him from getting sick. At least he got extra TV time! The thing is, I don't go hardly anywhere, so I can narrow down pretty fast where i might have caught something: Coleson's school, take out food from a Thai restaurant, or walking outside to get the mail.





The kids had fun at their grandparent's house for their annual egg hunt.



On Friday it snowed, after our last experience, the kids were out before breakfast. Sure enough it melted by lunch.

We had a great conference weekend. We were glad to not be in the hospital and enjoy all the sessions from the comfort of our couch. Our heart goes out to all the other parents with special needs children who have amazing spirits. We are truly blessed.