Thanks

I feel bad when I drop out of the blogging world for a few months.  Our computer burnt up after the last post.  I lost the camera for several weeks.  Then after everything was found and fixed, we have been in the hospital again with Ammon.  We were admitted the day before Thanksgiving for respiratory distress and a high fever.  He tested positive for Rhino virus, which is your common cold. Ammon went from bad to worse with breathing and fevers, but now we are back to better.  We might even go home Monday.  We have gone through every blood test and X-ray to find the source of the fever or infection, but nothing has turned up.  He is on a nasal canula during the day and bipap at night, which he went home with last year.  Last night he was given an IVIG, which is a blood transfusion of just antibodies, to boost his immune system.  So far he hasn't had any of the side effects and his fever is going down! (Thank you to all those poor college students who have donated plasma to earn extra money.IVIG comes from the plasma) We are hoping tomorrow is a stable breathing day with no fevers.

Thanks mom for coming out here to take care of our family.
Thank you to all those who care about Ammon and keep him in your prayers and serve our family.
Thank you to all those who supported us at the Buddy Walk!
Thank you to all the nurses and doctors at Primary Children's who continue to preserve Ammon's life.  It's nice to see familiar faces.
Thank you Coleson and Brynn, who roll with the flow when their mom is gone.
Thank you to my wonderful supportive husband who has learned to change diaper blowouts, put mousse and barrets in curly hair, and make pumpkin pie.

The last two months have been great. The weather was nice. Ammon returned to school part time.  We celebrated his birthday with the neighborhood, which was also a celebration of one year done with chemo, two more to go.  Coleson had a great 10th birthday and continues to amaze us with his reading scores.  Brynn started dance class, which she loves.  She continues to say the funniest things like "can we listen to 'all I want for Christmas is my toothbrush cheese?'"  We tried to explain what the real words are, but apparently we are wrong and she has brushed her teeth with cheese.

Hope everyone is having a fantastic holiday season and remembering those things that are most important!

Buddy Walk and 5K...

It's finally here!  The Buddy Walk and 5K are tomorrow morning, September 15!  Can't wait to see so many of you there.  We'll post pictures and an update afterwards.  Remember to wear something camo or military oriented as part of Ammon's Army, we'll have military tags for everyone.  Thanks!

August Activities

I am sad our summer fun is over.  We have been busy trying to get out of the house, but not over doing it to keep Ammon well.  Ammon continues to be doing good as far as a Chemo/cancer standpoint, but his stomach has issues, which keeps him crying and in pain half the week.  So he is still having challenges, but on good days we have enjoyed life. 
Here are some fun things we did.


Coleson officially learned how to play Lacrosse at a camp.  He had so much fun.

I wanted to give the kids a pioneer experience before Pioneer Day, so we toured Brigham Young's House.  The missionary sisters there had never encountered someone trying to come in a wheel chair, so I had to pull Ammon up the stairs to go in.  Then we could only see the bottom half because there is no way I could take him up the stairs inside.  All the ornate wood carving and furniture still amazes me.  It always fills me with gratitude for the sacrifices the pioneers made.

 Afterward we hit the neighborhood market for ice cream.  Coleson and Brynn had never had bubblegum flavor before.  They were in heaven.  Remember trying to save the gum in a napkin for later (Brian says the side of his cheek), when you were a kid, but by the time you went to eat it, the gum was all stuck to the napkin and just wasn't edible.  Yeah, it was fun to relive that.

 We made it to the Bountiful Parade, thanks to the help of my inlaws.  I carried Ammon several blocks in order to be able to squeeze through the crowd.  It was worth the effort to see the 2,000 stripling warriors!

 We went to the Treehouse museum for Brynn.  I think this was the only moment where Ammon wasn't crying.

 Our garden has survived this summer and I found a great use for my unsightly chain link fence.  It's hard to tell but there are several green bean plants growing up all over the fence.  I think Brynn picked out the longest one.

One week I was feeling very adventurous with one of my friends and we decided to go to Thanksgiving Point's dinosaur museum on $2 Tuesday because I had never been there before.  Ahhh! That was the worst idea ever.  Trying to go through thousands of people with a wheelchair is not my favorite thing to do.  I actually avoid going anywhere with a crowd.  Ammon was crying within 15 min(probably from all the noise) and so I thought I will just keep walking and make my way through the museum while Coleson and Brynn soak up everything they have ever wanted to know about prehistoric creatures as fast as they can.  At one point I could not see Coleson and figured he was lost.  I am glad he is not afraid to talk to adults and figure out how to get help.  I was trying to get through the mass and find my way out, when I get a call on my cell phone saying they have my son.  After that, I was ready to go, but the kids begged me to at least go to the end where you can dig for bones.  I was trying to figure out where I could sit and pull Ammon out to hold him when I saw this wheelchair sign.  I thought oh this is where you park wheelchairs.  So I put his wheelchair there and then the light clicked on.  There was a counter with sand on it and you push your wheelchair up to it so then Ammon could sit and put his hands in the sand.  It made my whole day.  All the crying kids and yelling in the background faded and I helped Ammon brush off the sand to find a bone.  As I left I told the old lady at the exit that it had made my day.  She just smiled.  I don't think she could hear me above the noise, but it made the hour of chaos worth it. 

2012 Buddy Walk and 5K!!!

Save the date of September 15, 2012 (Saturday) to participate in the Buddy Walk with Ammon!  In light of all the warriors and angels that have prayed for and served with Ammon this past year, coming up with a worthy team was rather easy.  In every regard, you have loved and supported Ammon through some of the most daunting battles that a 6-year old is called to go through.  Please join us in celebrating the numerous hard fought victories that Ammon and each of us have experienced.  Be part of Ammon's Army at the 2012 Buddy Walk and 5K!

We'll post more later, but to register for the Buddy Walk or the 5K, or both, please click here.  

Two Cheetos

Hooray for summer vacation...Life has been good.  I don't know who was more excited, Coleson or me.  We were able to make it on vacation!  I have been waiting 8 months to go somewhere and Ammon was finally well enough to travel.  We went to visit my parents in northern California and we did it without visiting the hospital.  We still had several days where Ammon wanted to be held all day and cried a lot, but it was so much easier having three other adults to help!  The second week he was feeling better, so we were able to get out.  We pretty much did the same things as last time.. incredible John's pizza, Folsom zoo, gold panning, kayaking, but this time Brian was there to do it all with us.  We also saw friends and extended family whom I miss.  The newest thing was a splash pad that we hit a few days.

We hit cherry season just right, so we enjoyed my parents prized cherries.  Coleson can tell you all about protecting the tree from predators with a BB-gun.

Water wars with Paki (grandpa).

Brian and I were able to sneak out for a night and celebrate our 11th wedding anniversary!  (Thanks to my parents) My mom didn't get any sleep, so I don't know if we will ever get out again.  I love my wonderful, supportive husband, who never complains. makes me smile, and works hard.  He let me sleep in almost everyday of our vacation.  I badly needed the sleep.  I usually get up several times throughout the night with Ammon and by 5:30 I wonder if I even slept.  Then everyone gets up around 7 and I want to cry.  Coleson started making his own breakfast and getting himself completely ready the last few weeks of school because I just couldn't make myself get up.  I would barely get out of bed, throw his lunch together and drive him there by 8:45.  So, on vacation Brian would get up around 6, hold Ammon on the couch, and I would get up around 9 or 10.  It was so nice.

The kids were surprisingly good on the drive home and didn't look at each other wrong or tattle because someone was touching me, well maybe a few times.  We actually stopped at a run down play ground in Wendover as a break/ reward.  There was an awesome ride there.  This double swing which spun around and lifted the kids higher, the faster they went, like a fair ride swing.  I might have gone on it too.  Definitely worth the stop if you are traveling through!

Brynn turned 4! This is when I want to freeze time.  She is imaginative, helpful, happy, and so loving.  She wanted to have a Rapunzel themed party with friends and cousins.  She loves to brush her hair, clean, read, paint and sing and dance, so I think it's a good fit.   We did hair and made jewelry.  Brian jokingly suggested we have the girls clean, but we skipped that activity.  She loved it and was thankful for all the "pretty" presents.

 

She had her friend Davin come, we figured he could be Flynn Ryder, but he didn't want anything to do with the girls for most of the party. 

This is how she ate her cupcake at the end of the party, she was worn out.  Did I mention she just started swim lessons the day before?

 
We had an awesome 4th.  We celebrated with neighbors for breakfast, Brian's family for lunch, and my brother's for dinner/fireworks.  All were so fun.  Coleson couldn't wait for the fireworks because we can do aerials in Utah now.  I think he asked when we could do them about every hour.  Brynn got to celebrate her birthday again, but had a little too much attention, froze and cried.  She was grateful for everything, though.

If we hadn't done enough for the last few weeks, we also went camping this weekend.  I was nervous again about taking Ammon.  After reviewing all his needs in my mind and figured we would have enough portable oxygen for 24hrs, we took a chance.  I figure that I hold him most the time anyway, why does it matter where I am.  I did worry about the smoke and tried to keep him out of that.  We had a great time and we did get to light a fire despite all the fires and restrictions.

Brynn couldn't get enough "smashmellows".

Coleson got to go exploring with his cousins and brought back a ton of dead branches to work on his pocket knife skills.  Coleson and Brian went on an "awesome but grueling" hike.

We were able to squeeze our activities around Ammon's chemo.  He had his backpoke two weeks ago and recovered pretty well.  He still has bad days with the steroids and all the medications he is on.  I think they all upset his stomach pretty bad.  Last week he finally seemed to be doing good and I noticed he was sucking, not just licking, his finger.  We were next to some puffy Cheetos, which used to be his favorite thing to eat.  So I thought maybe he would like one.  I put it in his mouth, not knowing if he would gag or like it.  He started sucking it like crazy.  He ate the whole thing and so I gave him another one.  I couldn't believe he didn't choke or gag.  It made my day.  There is still hope that he will regain his abilities!  I have been giving him one everyday.  Then tonight I was holding him and he was moving his hand around and really making eye contact.  I held out my hand and said "Ammon. high five"  He looked at my hand and started to move his whole body until he could focus on the right muscles to move his arm and give me a high five.  It was real!  I could see it in his eyes.  I did it again and again and had Brian record it.  Little things like this make me so happy and fill me with gratitude for what he can do.

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.

Happy Trisomy 21 !

I just found out it is World Trisomy 21 (3/21) Down Syndrome Day! I am so glad that everyone is so accepting of Ammon and others who have Down Syndrome. A few years before I was born and earlier, doctors convinced parents their children should be institutionalized. Kids with Down Syndrome were basically good for nothing. I can't imagine that. I love the documentary about John. His parents were told to give him up and after a week they felt so bad and they knew they wanted to raise him and give him a chance. They went to the institution, brought him home, and treated him just like their other children and loved him. Although he couldn't do the same things as everyone else, he brought happiness and joy to their home. I know I have learned so much having a child with Down Syndrome. I enjoy meeting and interacting with the other kids we meet through the Down Syndrome Foundation. They are so cute and happy. They are so pure and innocent, love can just radiate through them. Ammon has cerebral palsy and epilepsy (and now Leukemia) as well, so he can't do as much as those children, but he emits a lot of love. Everyone wants to be loved and be accepted for who they are and those with disabilities are no different. We are grateful to have Ammon in our family and grateful to all those who love him as well. We appreciate everyone who says hi to Ammon, thinks about him, prayers for him, etc., even if you don't get a response. We can tell he appreciates it. Ammon loves the attention.

Well I hope you can smile today like I have. This beautiful spring day has given me a lot of hope that things are getting better. We left the hospital on Thursday night and it was not cold outside. I couldn't believe it. I hadn't been outside all day, so I had no clue it was nice. Then it snowed over the weekend, so we are trying to patiently wait for the warm weather to come back. Ammon is doing much better. It was kind of a stressful weekend, his port wouldn't draw blood back, so the nurse had to come out two times. Brynn was coughing all over and Ammon's counts were still low, so I was trying to keep them apart. Then I think the lack of sleep and everything hit me all at once, so I was worn out, done. Monday at 4:55 we found out that Ammon's blood counts had gone back up, so he is doing great. We get another few weeks off of chemo, they aren't going to have us make up for what we didn't get last week. Hooray. We are almost on to the Maintenance phase, meaning once a month treatments for the next year. So the worst should be over!

Ammons condition

Ammon has been a trooper, once again. After one night in the PICU, his vitals were stable enough to move to the ICS unit. He had been pretty calm on Monday, until late afternoon his crying began. It got worse and worse throughout the night and they were concerned about his oxygen level on the rise. Once we got his pain under control and calmed down, about 3 am, he was stable again. He was having servere abdominal pain and on Tuesday I took him to get an ultrasound and x-rays. The only thing they saw abnormal was tons of gas. We tried mylocon drops, heat packs, massage, and pumping his legs, but nothing seemed to be helping. He had a pretty good bowel movement that night and I was waiting for him to relax and fall asleep, like that was a relief, but no such luck. He did calm down for a few hours to sleep. Then this morning at 5:30 am, I could tell he was trying again and we soon had a diaper explosion. I quickly hit the call button for nurse back up. That's one benefit of being in the hospital, immediate help with changing diapers. After we scrubbed him down, poor Ammon, he went right to sleep. You could tell that it seriously wore him out. After sleeping in he woke up without crying. That's when I knew we had turned the corner on this particular battle. It's been a painful few days. He met the criteria today of not having a fever for 48 hours, however his white blood cell is still next to nothing, but he did get a hematacrit(red blood cell) transfusion. That might help with the overall function of his oxygen demands and healing. Tomorrow we will see if his counts improve and talk about possibly going home on Friday!

Where's the snow?

Brynn loves making snowmen( so do I). Unfortunately the snow just has not been sticking at our house, so brynn keeps asking when are we going to play in the snow. Well, i'm not too upset that we've had a mild winter, it's made it a lot easier to take ammon to and from his appointments. However, two weeks ago there was some snow on the ground. Brynn and I planned to make a snowman after church. By the time we got home, it had melted and she was almost in tears. Last week we had a blizzard over night and so the next day when the sun came out, I changed Brynn into her snow clothes right after breakfast. Already a lot of the snow had begun to melt, so this was about the best we could do. (i'll post a picture when we get home, just imagine a very small skinny snowman with gumdrop eyes) After about 10 minutes, we had our fill of trying to make something out of very little snow, in sunny but windy conditions,we were back inside. It very anticlimactic, but Brynn was happy. We made more paper snowflakes and had our hot chocolate.


Ammon almost survived the week. He threw up a few days at the beginning of the week and then seemed to be doing pretty well. He was
sleeping a lot, but yesterday we were dancing to Dynamite. Well throughout the night he started crying pretty hard and his temperature started to go up and down. Then around 4 or 5 am he started breathing heavy, but finally calmed down and went to sleep. I stayed next to him because i was not going to move a muscle and risk him waking again. After a few hours I noticed he was burning up and knew we needed to take him in. We are in the PICU tonight in an isolation room because he is neutropenic. One of the chemos he was taking this week is known for causing fevers and blood counts to fall, so maybe it was just a matter of time. Right now he is peacefully resting after the trauma for the day. Hopefully he does not have a virus and we just have to wait on his blood counts to go back up. I'm really hoping for a short stay.

Burning Bright...

Despite Ammon's illness setback referred to above, we are getting close to being done with this initial intensive 6-month treatment phase. We are close, and it's caused me to think quite extensively on what Ammon has been through and experienced during this first phase. Just a few thoughts.

Cancer and pain are two companions that are never far apart. They can’t do much without each other, in fact when they are separate they are virtually powerless. For many of us, pain is usually locked out in the harsh and freezing torrents and no matter how hard he pounds on our door we are not foolish or sympathetic enough to willingly invite him in and enjoy our company. Unfortunately, his companion, cancer, has an extraordinary key, perhaps more aptly described as a skeleton key. As a silent thief in the night, he uses this key on a seemingly random basis, unlocking the locks and bolts on a worn yet purposeful door here and a young sturdy door there, and inviting his friend pain to come in, and together warm themselves by a fire that is not their own and not intended for them. They try to smother every degree of warmth from that fire for themselves, even if in the process they selfishly cause it to burn out. It’s amazing how quickly they can take over a home, until their chilling presence is felt through every wall, under every cover, and even in the most safe and secret closets. Their presence is also swiftly felt throughout the neighborhood, and family after family rush to provide aid and raise the alarm. Eviction is the only solution, and the earlier the process is initiated the more realistic it is for it to occur.

On October 1, much to the surprise and dismay of everyone, authorities discovered Ammon’s door wide open and these two squatters silently and painfully making themselves at home. Ammon previously expressed all he could to tell us they had arrived and he needed them to go, but then he had to wait for some time and continue to endure while his expressions were being interpreted and finally understood by us and others. Upon their official discovery, eviction notices were swiftly served on October 2, and almost six months later a continuous round of measures have been performed to ensure their permanent eviction. The process has been incredibly difficult, and the pain has been endured with more nobility, trust, and courage than I can comprehend. With miracles and blessings, Ammon has proven to endure it well, and has been a constant reminder that this too shall pass. As we approach the end of this first “intensive induction” phase, the doors and windows in Ammon’s body have been reinforced, medical security systems have been installed, and forever there will be vigilant and wary guards ceaselessly searching the perimeter. If cancer should somehow pass through and enter again, it will not pass unnoticed this time.

For some the eviction process requires a full gutting of the home to completely eradicate the thieves’ influence and residue, not even an odor of their passing must remain. For some, due to the extensive alterations and procedures performed, the appearance will always be a visible indication that the intruders were once there. While for others, the process is different, or at least received differently, and the ending appearance to those outside looking in is that less extreme procedures were required. But no matter how extreme or unique the process is for each individual, one thing is the same and equally shared and understood among all survivors and their families, specifically that cancer was once here, and cancer might come to visit again.

That extraordinary key and its stealthy holder, sometimes have proven to be a match for even the best laid plans and defenses. Living life in fear of their return is understandable, yet unacceptable. We have received assurances that his return will not be allowed to occur, and we believe those assurances with all our hearts. But even without those assurances, though it is easy to say and much more difficult to do, that cancer and the threat of his return, cannot be allowed to destroy Ammon’s peace and joy.

The fire in Ammon’s hearth continues to burn strong, and it always will. The warmth and comfort it emits is somehow more intense than before. You are always invited to come warm yourself, and allow Ammon to be warmed by you. His door is always open to us. For us, he is a daily reminder of God’s concern and deep love for each of us. Together, each of our fires burn more brilliantly and bright.

Checking In ...

Well we made it through another two weeks. It's taking longer for Ammon to bounce back from his treatments, but he's still enduring. Last weekend we had to spend a night at the hospital because he was having a ton of seizures from the steroids. He was looking kind of lethargic and I did not want another pancreatic issue. He also seemed to be in a lot of pain, I was giving him Tylenol or Oxycontin around the clock. Our doctor advised us to go to the hospital to have him checked. By the time I drove into the parking lot of Primary Children's, Ammon seemed so calm and happy, I thought maybe he just needed some fresh air and a good nap, I was tempted not to go in. It's hard for me to submit him to trauma-poking and prodding-when he isn't crying. I knew the moment doctors started evaluating him, he would start crying. He did-although he was crying significantly at home-and was crying so hard he couldn't seem to catch his breath and his oxygen sats were dropping. I reassured the medical staff that he was not having breathing issues before we came in, he was not sick, he just gets all worked up when we go there. He recognizes where we are. His lipase was a little elevated so they watched that and we gave him some extra medication to stop the seizure cycles. I knew he would be okay in a few days, when he was done with the steroids. The next day his seizures were still happening pretty often, but I felt okay taking him home (Brian was going out of town so I needed to go home). I know the longer we stay in the hospital our chances of not getting enough sleep and catching a virus go up exponentially by the hour.

The day after we were done with steroids, Ammon slept almost through the night and he was back to just having a few seizures. He walked in his walker today and I finally pulled his tooth out, the one we thought got knocked out while we were inpatient. It was just chipped and impacted in his gums. It had been hanging there for weeks, but again i don't like to inflict any extra pain on him. We go in on Monday for his next treatment. Hopefully just 3 more weeks left.



What in the world is she doing? She drug the bag of potatoes into the living room, took off her socks and stuck her feet in. I asked Brynn what she was doing and she just shrugged and said it felt good. She really likes pushing or pulling heavy things around so maybe that's what started it? Brian thought it would be fun for everyone to think of a caption for the picture, Like "Pota-TOES"

She cracks us up. She has learned how to copy laughs, like my mom's or mine, but her true laugh is the perfect giggle. Today she told me all about her "sister" named Marea and her friend named Dickle? I've never been around someone who has had imaginary friends, but she was definitely talking to them today and even asked if I liked Marea's pink dress. Then they both got sick and had to go home. They live with her teacher. I think I have mentioned before how she always talks about her teacher. She is always saying "My teacher can do that, or my teacher has that" Her teacher sounds like this amazing person who can do everything.
More Brynn: "Mom if I get more and more poop out I will turn into a little baby"


Coleson made this scarf at school. I am impressed. I asked if he could make one for me. Coleson just ended his basketball season. He made some improvement this year. He said his best skill is to bring the ball down the court and to pass it to the kid who always makes it. I cut Coleson's hair pretty short after this picture. He looked in the mirror and said "Mom, I didn't know I had ears that stuck out" My kids make me smile everyday. Life is good.

Oreo

Oreo was our grey and white pet gerbil that died today. Oreo was our first real pet, and Coleson's primary responsibility. We were all saddened on Friday when Oreo just wasn't acting normal. He had been running around his ball in the kitchen while Coleson cleaned his cage. Oreo had been there all day and when Coleson went to put him back in, he was limping and shaking. I don't know what happened, but I read online that it is normal for old aged gerbils to have seizures. The seizures don't cause any pain, but you could definetly tell that Oreo was not well, when he just let you hold him and did not run away. Brian was flying home from Billings during all of this, and he called Coleson right when he got off the plane. Coleson was in full tears at this point, and Brian did his best to make things better. We said a prayer for Oreo and everyone that loved him. Oreo had two previous neighbor owners, so we figured he was close to 4 years old, which is very old in gerbil years. We had our tears and remembered the good times. Coleson taught him to run in the hampster ball. It took about a week of slightly moving the ball everyday to try to teach him to do it himself. He was too fat for a normal wheel to run in. Lately he had been getting very picky about eating and only picked out the good stuff from his mix, like sunflower seeds and banana chips. I don't blame him for not wanting brown pellets and seeds that look like they should be for birds. I guess having an extra day before he died was nice because Coleson has already started to talk about getting a lizard today. On Friday when Coleson was in panic mode and we were trying to decide how to help Oreo, not thinking he was going to die, I said it's interesting how Ammon was doing so good and maybe Oreo was taking a turn to have Ammon's seizures. Coleson said, "I wish we could all do that for Ammon, take a day, except not on a school day."

On a happy note Friday was a turning point for Ammon. For the past two weeks he has cried and slept a lot. He had chemo on Monday which did not involve a lumbar pucture, which meant one less chemo and no steroids. He still spent most of the week crying hard when he woke up, but then calmed when you held him until he fell asleep again. He did that cycle every one to two hours during the day and night. Then on Thursday night he had one of his fave friends hold him while I put the kids to bed and he slept so well. On Friday we had some other wonderful neighbors come over to help and he was so happy all day, I hardly held him, just talked and tried to get him to hold things and respond. Yesterday, and even better today, we got him to laugh and shout out. It's so nice when he responds again. He actually did a cute little yell in the middle of the night for me to change him, instead of a 9-10 on the pain scale yell/cry. It made me smile and not even care that it was 3am. Today he went in his walker and walked for about 10min, took a bath, played on his stomach-which he gets to do about once a month. It was such a good day! We go back in on Tuesday and start steroids again. We will savor tomorrow. He still has mouth sores, but everything else seems good. His seizures have increased some, a few petit grand mals at night, but again have been better over the weekend. The doctors are continually impressed by his condition. They said this week he would have a 50% chance of his blood counts falling and becoming feverish, but so far so good-just nobody sneeze.


Things that make Ammon happy:Brynn reading to him

Brave Like Ammon...

Chemo days stink. They really really stink! That’s intentionally meant to be really really bad grammar. Just the phrase “chemo days” is enough to depress an otherwise perfect day. I sometimes think that most things that are rough, and that are repeated again and again, should get easier as I become more accustomed to it. Sort of like exercising and working out really stinks for the first month, but then as the routine builds and the muscles strengthen, even if the thought of working out hasn’t become easier the actual performance has. That line of logic doesn’t seem to apply to chemo, and quite literally seems to be the complete opposite.

I don’t look forward to chemo days, I dread them for days before, and pray for their rapid passing once they’ve arrived. I’ve tried, but I still can’t imagine what our strong Ammon goes through. I’m not entirely certain he knows and understands when a chemo day has arrived when he wakes up on those mornings, but that realization surely hits him hard on that first chemo night. Yesterday was a chemo day after a two week break in the schedule. Yesterday’s ‘chemo day’ involved a couple different chemos, a lumbar poke, and large dose of steroids. He was also scheduled to receive the PEG chemo again, but gratefully we asked and it was not administered (the PEG is what necessitated a life flight trip, 6-weeks in the hospital, and the most painful recovery yet in Ammon’s cancer journey; so no thanks to the PEG).

Most times when Ammon goes in for chemo, I’m sure in many instances he recognizes the hospital, the doctors, the equipment, the procedures, and the resulting pain. Yet he continues to be our brave little boy. He generally doesn’t cry out or become inconsolable while at the hospital. In a truly sad yet inspiring way he simply submits to the painful lifesaving treatments that must be administered. Ammon has developed a very high threshold tolerance for pain, and that fact alone makes me exceptionally sad at times.

But the counter to that sadness is the joy I feel in simply knowing and being near Ammon, and experiencing with him all the miracles and blessings. His strength in the face of such afflictions is an inspiration to me. It’s interesting, but one of Ammon’s favorite things to do is ‘read the paper’. ‘Reading the paper’ usually entails wrinkling it, shredding it, throwing it, waving it, and sometimes playing peek-a-boo with it. Some days when Ammon’s at the hospital waiting for his next treatment, he’ll be laying on an examination bed with the white paper underneath him. This is the best kind of paper, and Ammon knows it. In what is generally a difficult thing for Ammon to physically do, he’ll reach behind him and under him and start shredding and playing with the paper. Summer will sometimes text me a picture of Ammon having a blast with the paper and include a message of “Dad, doing great, and loving the paper!”



When I get those messages I feel strengthened and inspired by Ammon’s undaunting bravery. Through his actions, I can see him saying to me, “Dad, I know this place, I know what’s about to happen, I know how it’s going to make me feel, but I’m gonna make the best of a really bad situation. Dad, don’t you know that they have the best crinkly paper around!” There are lots of places other than the hospital receiving chemo treatments that I’m sure Ammon would rather be, but sometimes the right place to be is not the same as where we want to be.

There’s so much I’m learning from Ammon and expect to continue to learn. Yesterday at the hospital, Summer saw Cecily, one of Ammon’s favorite nurses from the PICU. It’s been a couple months since we’ve seen Cecily last, but she still draws strength from knowing and serving Ammon. She told Summer that she keeps in her room Ammon’s badge and remembers to be ‘Brave Like Ammon’. Ammon has proven, in every way, that his level of bravery is one that we should all aspire to.

Ammon's Progress

I'm glad Brian posts the important things about Ammon, please see the post below. I need to get back into the regular blogging, so I don't leave everyone hanging as to how Ammon is doing. I guess I just needed a break from always talking about Ammon's cancer and treatments.

It's been a hard week. I don't have nurses helping me or a mandatory break twice a day, or Brian's iPad during chemo visits, so at night I am usually just too tired to post. Last Monday Ammon finished his fourth month series of chemo which was every ten days. With each treatment the amount of chemo has been increased, so instead of feeling yucky for 2 or 3 days, it has been 5 or 6 days towards the end of this phase. Then we have about two days of feeling good, with Ammon smiling and responding again. Usually the day before chemo, his oxygen saturation rate increases enough where we sometimes take him off of oxygen, but then the chemo just knocks him down to start over again.

This last week I think he is developing mouth sores in his throat, which he was expected to get with the most recent chemo rounds. It's the only thing we can't cure in the middle of the night. He basically sleeps only for an hour at a time before crying. Then finally settles down around 5 am and sleeps until 11 or noon. After a few days of being sleep deprived I tried to go back to sleep after getting Coleson to school, but I think of too many things to do.

Brynn is also very excited to play with me. She wants to play beauty shop every morning. We have to have pretty lips, brush our hair (she has to put some hair in my face and then pull it back for me very tight until I say it hurts), check our nails to see of they need repainting, and eyeshadow. She usually picks a dark purple and blue eyeshadow for me. We usually don't go anywhere, so I have been letting her do whatever she wants to me. On Friday, we picked Coleson up from school and then I chatted with some neighbors outside while the sun was shining before going back in. When I came in I glanced in the mirror to find my rainbow eyes. The one time I go out in public and I forget to see what I look like. I don't know where she gets it because I really don't put on that much makeup everyday. I hadn't painted my nails for years and now they are always half way done.

"Mom don't drop anything down the brain"


The sleep deprivation has had a positive side. I really have enjoyed the few hours of uninterrupted time with Brynn in the morning. She always has to share her time with Ammon, and Ammon generally comes first. About a month ago she really wanted to sit in the rocking chair with Ammon and I, since that is what we were doing half the time. I told her she couldn't, there just wasn't enough room. She would still try to climb on us and I would really get upset. I tried to find a time when I could rock her and read a book, but it just didn't happen. Then one day I happened to be sitting a little sideways with Ammon in the rocking chair, and Brynn was able to nudge her way into a little corner in the back of the chair with us. She was so excited and with a big smile called it her little spot.

She is so good about helping me with Ammon, probably because if she wants my attention she has to join into what I am doing for him. However, I do think she is at the magic age where she loves to follow me around and do household chores and really mimic what I do. She has learned to pour the soap and start the dishwasher. She is right there helping me change diapers, particularly the blowouts. She still loves to vacuum and sweep. She started cutting Ammon's tape for his feeding tube dressings. She could probably give Ammon his medications if I let her. She gives them to her babies with the syringes pretty well. She asks when she grows up and is 4 can she then give Ammon his medicine.

She makes us laugh. One week Brian was out of town and she asked when Daddy was coming home. I told her he had flown away in an airplane and wasn't coming home for a few days. She then turned to Coleson and with a sincere sense of urgency said "Coleson, we need to turn into monkeys and fly on a balloon and catch Daddy's airplane to see him." It sounded like a Curious George plot. She tells Ammon she loves him and gives him hugs just at the right times. I took the kids to Toys r Us on Saturday and she right away picked out a squishy lizard. "This for Ammon!" I'm glad I had enough sense to stop myself from saying he doesn't need that and let her get that for him. She has been what gets me through everyday.

I don't want to leave Coleson out. He has been amazing at getting himself up and ready this week while I try to get myself out of bed. He continues to excel at school. He was assigned to read a book which he discovered had some swear words in it. He asked his teacher all on his own if he could switch books because he didn't feel comfortable reading it. His teacher let him switch, which also meant he had to read 200 extra pages in a week. He did it.


Thanks again to our neighbors and family who come over to clean, bring meals, and watch Ammon so I can watch Coleson's basketball games. Thanks for the continued prayers. As far as cancer cell counts go, Ammon is beating it (did you ever doubt). We have a week off before we begin steroids again and new chemos. The steroids we already know make him inconsolable for several days. It will be a rough month. So we are going to enjoy this week. We are going to savor every moment.

My parents are coming to visit and help in a few days, and the kids can't wait!

The Cow Who Coudn't Moo...

We'll have a much needed Ammon update out here shortly. I wanted to share with you a fun story that a friend of ours wrote for Ammon. Ben is a good friend of our family and a very good friend to Ammon. He wrote the following story (and even drew the pictures) and presented it to Ammon as his Christmas present. You'll notice that Ben, just like many of us, has frequently seen beyond what our natural eyes show us, and has witnessed Ammon's strong spirit. Ammon's many abilities to inspire good and joy will always outweigh his apparent physical disabilities. Thank you for sharing through this fun story, the strong and brave Hero that we have the opportunity to be near everyday.

If you can't see the words clearly in the pictures below please let me know and I'll type them in.