"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!