April

We made it through the rest of winter and spring!  Ammon is doing better, but has been having some congestion/ breathing issues that don't seem cold related.  I have stayed busy suctioning!  I visited several doctors last week and his pulmonologist thinks maybe his tonsils are bothering him.  On Thursday, I visit the ENT for another opinion.

Here is a brief summary of our spring activities:

Coleson had fun designing his rocket for cub scouts.  He placed 4th.  We are pretty consistent with 4th place in scout events.

Since Ammon has not been very well this spring, I have not been able to go to church very often.  Brian goes to early morning meetings, so getting the kids to church sometimes poses a problem.  One morning Coleson said don't worry about it mom, and ran to church all by himself.  I thought it was so sweet that I took a picture of his foot prints to remember.

 For Easter, Coleson got glasses.  He can see at school now!  This was a moment where Coleson's needs got placed behind Ammon's issues.  It wasn't until Ammon was in the hospital that I realized along with grandma's asking, that he could not see the board at school.  I think he looks very handsome.  I'm glad they make cool glasses for kids.

Brynn insisted on being a fairy for the egg hunt at Grandpa Cheney's house.

Cute kids on Easter!

 Brian took Coleson and Brynn to the Firebird Symphony with the Hopekids group.  They loved it.

 Brynn went to the community Princess Academy and had a fun spa treatment,

 We enjoyed ice skating with Ammon!

Time to brag about my awesome husband.  For Mother's day, Brian came up with this cute bowl of love notes without any help from pinterest or blogs!  I was treated to breakfast in bed with yummy crepes and then fresh lemonade for dinner!

I was looking for Brynn one day, when she popped open the dryer drawer and had found "someplace warm"!

She loves her dance class!

A few months ago, my brother Ryan and his wife Jill, adopted a baby boy, Jayden.  We are so happy for them and he is the cutest baby.  We are excited to have another cousin!

"This is a Good Thing..."

We received the best news yesterday, and we are hopeful it is the best answer for Ammon.  Yesterday was a visit to the clinic at Primary’s for a ‘hospital chemo day’ (we give Ammon chemo at home on a regular basis, but hospital chemo days are always more intensive).  Hospital chemo days generally turn into a chemo week and sometimes weeks, with Ammon finally starting to feel good again the week before another hospital chemo day arrives.  Ammon also received a lumbar poke, which requires anesthesia and is usually a more intensive experience than the norm.  Over a year and a half in, and still I sometimes find it difficult to refer to chemo and the cancer process as the norm; it’s not like you get used to seeing the pain and discomfort Ammon experiences and endures, but it’s more just knowing what is to come. 

Ammon had a good day yesterday, and while Summer was waiting with him for the lumbar poke, Dr. Afifi shared some important news with Summer. Dr. Afifi has been Ammon’s lead oncologist since Ammon’s diagnosis, while a series of other exceptional doctors, such as Dr. Sato, have also provided much appreciated love and service on Ammon’s behalf throughout.  It’s really been a team effort by a large portion of the pediatric oncology group, and each doctor involved has always taken a special interest in Ammon.  It’s clear that they have grown to love Ammon in many of the same ways we do, and Ammon returns the love and attention in his own personal ways.  With Ammon not being able to talk in the same way you and I do, it’s interesting to witness that sometimes the spirit and character of an individual far outshine the words that might just get in the way. 

To preface the news that Dr. Afifi shared, it’s important to know that once again I was out of town for a brief conference in Vegas.  On any day that is a hospital chemo day, Summer and I ensure that we connect frequently through calls or texting.  I received a call from Summer while riding on an airport shuttle to the rental car building.  I was sitting at the back of the shuttle, and if you’ve ever sat in that spot you know that the engine is right behind you and you can barely hear your own thoughts let alone a fuzzy cell phone connection. With the sounds and images of the airport flying by, Summer tried to give me an update on how Ammon’s chemo treatment was going.  When I asked how everything was going I realized that Summer was crying, and I immediately went into my hyper concerned mode.  After three attempts at explaining, all I could understand was that Dr. Afifi and Dr. Sato had shared critical information about Ammon, and Summer was crying because of what they shared.  I started getting all emotional because I thought some new awful thing was happening to Ammon, one more brick for Ammon to carry: the cancer was back; the treatments weren’t working; something went wrong with the lumbar procedure; and on and on.  Summer had to drop off the call for a minute to talk to one of the doctors and I couldn’t hear anything anyways, so I told her I would call in a minute or two once the shuttle ride was done.   

Here’s a little insight into how Summer and I operate.  We have a routine we’ve developed over Ammon’s life, where if one of us is crying over the phone and it’s regarding Ammon, if it’s a good thing we always start the conversation out by saying “this is a good thing” and then try to get through relaying the story or information through the tears and emotion.  I couldn’t hear Summer say at the beginning that “this is a good thing” and all I understood was there were tears due to a big meeting with Dr. Afifi.  Upon getting off that incredibly noisy shuttle I called Summer back, and finally heard through the tears, “this is a good thing, this is a good thing…”

While sitting in Ammon’s exam room at the clinic, Dr. Afifi relayed to Summer that Ammon had continued to be the topic of discussion and research among the pediatric oncology group, and that Dr. Afifi had reached out to other colleagues regarding Ammon’s treatment and diagnosis.  With Ammon resting on the exam table, Dr. Afifi relayed that they had decided that Ammon would not need to continue chemotherapy beyond December of this year, and they possibly might relieve these treatments as early as November.  That’s almost a whole year earlier than the 3-year cycle Ammon has been experiencing and we had been planning on.  Summer was so overjoyed that Dr. Afifi had to give her a big hug through all the tears.  Ammon understands a lot, he just has difficulty being able to express it.  I don’t know if Ammon understood what Dr. Afifi was sharing, but either way, Ammon continued to lay calmly on the exam table with his trusting eyes looking at his Mom and Dr. Afifi.  We are so grateful for this reprieve that Ammon will experience, and are grateful for the joyful receipt of this particular tender mercy. 

Part of the discussion had among Dr. Afifi, Dr. Sato, and the rest of their colleagues, focused on the risks and benefits Ammon would receive by continuing with chemo beyond December or discontinuing at that point.  The reality is that they were concerned that Ammon might not make it through another winter and flu season if he remained on the chemo regimen.  Chemo saves your life, but also leaves you defenseless to the environment around you.  Life, not just a life free of the pain of the curing chemo, but life itself was the benefit that tipped the scale.  Ammon’s blood counts continue to be great, and the risk that the cancer will return remains low.  Please keep praying for Ammon, and all our other friends going through the cancer process.  Hope is an incredible and divine thing to possess, and we have hope that this decision is right, that it is inspired, and that Ammon will remain healed for a lifetime to come. 

We look forward to ringing the bell at Primary’s come this December!

We are home!

Ammon has slowly been doing better!  On Thursday, I was ready to go home.  He had a good night, he was off all his pain medication and pretty mellow.  He still has to be suctioned regularly and on bipap every few hours, but after a mellow day I thought, I can do this at home.  When I was consulting with the oncologists about Ammon's status, I asked if there was anything else we could do to boost his immune system and try to avoid hospitalization.  They looked at his labs and saw that his immunoglobulin levels were low.  Last fall when he was hospitalized, he received an IVIG transfusion.  It gives you extra immunoglobulin to help your immune system, especially in mucus secretions.  I really feel like that has helped him to stay well, until now.  We decided to give him a transfusion.  The PICU doctors said we could go home, if I felt comfortable keeping up with the same routine, after his transfusion.  Well, when we woke him up to do his first respiratory  treatment, he started crying, especially when they started his IV.  He stayed that way most of the day.  His heart rate elevated and work of breathing increased.  I felt like he was going back to the way he was when we came in.  The resident came in and said sometimes kids can have a reaction to the IVIG.  That's two reactions in a week, not good odds.  However, by 7 o'clock he was pretty much back to normal, but I didn't want to stress his body out and try to bring him home.  I felt defeated, tired, emotional, but I had to remind myself, it has only been a little over a week, he is still doing remarkable and he is still sick.  I had a sweet nurse that told me she would take good care of him, rub his head if he woke up and that I should go to the parent room to get a good night's rest.  I took her up on that and Ammon and I had a good night.  Around noon on Friday I was ready.  Ammon had been doing great until I put him in his wheelchair.  He started crying super hard, which caused him to cough up a lot of stuff, but then his oxygen levels lowered and we had to suction him a few times.  The PICU doctors were giving me the look like "Are you sure you know what you are doing?"  The whole morning I felt like I was being tested.  I made the call of how long he could stay off the bipap, when to suction him, etc.  It's what I do on a daily basis, but when you have trained doctors and nurses watching you, I start second guessing myself.  I knew he would be happier sleeping on his own schedule, being around Coleson and Brynn,  not having temperture checks every two hours.  I don't like the fact that I have to be the "mean" one to suction and move him around to make him cough and stretch.  I made the right call, though.  He is so happy today.  He doesn't seem sickly.  He is able to play with toys and listen to everyone argue about doing chores.  Today I don't mind.  I am happy to be home too.  I am so grateful for those who prayed for us! Thank you mom for flying out to take care of the rest of our family.  Thank you plasma donors (It takes a thousand). Ammon is Home!

Monday

Yesterday Ammon had to prove that he could breathe well without the ventilator.  He did good on his trials, so they took out the tube and turned off the ventilator.  Hooray!  One side effect of being intubated is possibly damaging vocal cords.  I was worried about that since they made about 5 attempts before they finally placed the breathing tube correctly.  He did cry with a horse little voice, which sounds so sad, but I am so grateful.  I don't know what I would do if he couldn't cry to tell me when something is wrong.  He has a lot of mucus in his lungs, so he has to be suctioned frequently.  He is on a bipap machine, but looks so comfortable.  His seizures have been more frequent which haven't allowed him to sleep as soundly or breathe as consistently as normal.  I am hoping those will start diminishing as he gets better.  Today our goal is to cough up all the secretions in his lungs and prove that he is stable.  Thank you for all the thoughts and prayers.  He is doing so much better than I anticipated.  I just love my little boy.

We'll Take It...

Quick update on Ammon.  Since our scare on Wednesday night, Ammon has continued to remain stable most of the time and even make improvement.  When the doctors first intubated Ammon and put in the tube, one of his doctor's said it could be a while before it was removed.  Since this was our first time being intubated we didn't know what "it could be a while" meant.  I asked, does that mean 12 hours, 24 hours?  The doctor responded, "Let me put it this way, it could be a week or two weeks; if it comes out in under a week consider yourself very lucky."  Well, many of you know my thoughts on luck and coincidences.  Miracles have nothing to do with coincidences or luck, they have everything to do with faith and the reality and existence of a loving Heavenly Father coupled with many heartfelt prayers.  During rounds this morning we talked about Ammon possibly having the tube pulled tomorrow (Sunday) morning.  That doesn't mean Ammon is ready to leave the hospital, but it is a still a miracle.  Even if was pulled two weeks from now it would still be a miracle.

It's humbling for me to sit next to Ammon's bed, holding his hand, and to a large extent be able to discern of his strength.  I realize this is a father talking of his son when I say this, but there is a strength in being near Ammon that is real and tangible.  In spite of all the machines, procedures, and medicines that continue to assist Ammon in sustaining his life, he refuses to be broken.  I guess I'm just surprised to be so close to losing him Wednesday night to have him make such significant strides in just a few days.

Ammon has been awake at times over the past few days and we've been able to talk with him and read him stories.  When he's experiencing seizures or other pains we've been able to gently sing a song in his ear and help him to pull through it.  The tube goes right through his vocal cords, so on the few occasions he's been crying there is no sound at all.  The tube is a new experience for him as well, and I can only imagine how odd and uncomfortable it feels to have something in your throat and not be able to swallow it down or cough it up.  In addition to some continuing medications, Ammon's blood counts have dropped a bit and the doctors feel like a transfusion might be in order (we should know by tomorrow). 

Coleson and Brynn are doing well and have had a wonderful time being with friends and family over the past few days.  They have especially enjoyed having Maga in the home.  Coleson read through the previous blog post and has an understanding of what Ammon's experienced, but we generally tried to shield Brynn from some of the more extreme aspects of this experience.  I was surprised yesterday morning when I was at home and Brynn asked if Ammon almost died.  She is a little girl full of compassion for her brother, and frequently shows it through the service she performs.  She's also is a little girl with some very good ears and a capacity to comprehend the gravity of certain situations.  I'm nervous what she's heard Mommy or Daddy say on other occasions and possibly relaying in Primary or pre-school. 

Thank you again to everyone!  As one example among so many, a good friend brought in Tony Burgers last night.  I've never cried over a Tony Burger, let alone any hamburger, so that was a first.  Ammon wants us to express his gratitude as well.  Thank you for being the angels silently pushing at the back of his handcart through the recurring snow and cold.

Here's a picture of Ammon on Thursday morning; about 12 hours of being stable.

Here's another picture from Friday morning.  You can see the improvement.