There are so many things that I want to say, but it's late so I'll just have to give the highlights tonight. First, we have been so blessed by a short video that was made for us (by Hannah Norris) about Victor's life and passion for the Lord. This video played before and after his funeral and is now posted on youtube:
It captures a sense of the hope and joy that God gave our family through the last five years, and particularly in the final days of Victor's life. We've seen the amazing things that God has done over and over again along this journey, but even still, I (Deb) anticipated that watching my child die would a horrible thing to endure. And it is. BUT I never expected what ELSE God would do... that HE Himself would infuse the experience with His presence ... and give us all such wonder and joy even in the midst of our pain. Who but God could do that?! In the video, when you see Victor raise his fist in victory at a time when he can hardly breath or even open his eyes, I want you to remember that if you love this God of the gospel, HE SHOWS UP in your darkest hour. Praise be to God.
So do not fear, for I am with you: do not be dismayed,for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. ~ Isaiah 41:10
We certainly felt God's presence this past week as we endured the possibility of Eric having a cancerous growth on his jaw. Thankfully, the pathology reports on Eric's biopsy continue to indicate that it is/was an infection that encapsulated itself in a lymph gland. He is recovering well after a few very tough days. Doctors tell us that they are testing for various bacterial and fungal infections in the hopes that they can pinpoint a specific cause and better target his treatment. Since those tests can take 21 to 28 days to incubate, the final medical 'verdict' won't be given until those tests are completed. In the meantime, we are getting daily updates.
Last Wednesday, the results of Eric's CT scan at our local hospital implied a strong possibility of a tumor, especially since he had no other symptoms for infection (fever, cold, etc.). We knew we needed the name of a good ENT (ear/nose/throat) surgeon, so I contacted our medical oncology 'family' at Children's Hospitals. Would you believe that every oncologist that we knew was at the national 'Children's Oncology Group' conference in Atlanta ... along with nearly every major pediatric oncologist in the nation? So I texted an 'SOS' message to Susan Sencer, head of Pediatric Oncology at Children's, explaining Eric's plight and asking for her best ENT recommendation. Within a few minutes my cell phone rang and Susan said, "WHAT?!" Then she did what she does best ... her version of moving mountains: mobilizing people and appointments and information. Within the hour we had an appointment for the next day (Thursday) with an ENT and the only remaining oncologist at Children's, orders for blood work and chest x-ray, and promise to squeeze us into the surgery schedule on Friday.
I probably don't need to mention that visiting the Oncology department of Children's so soon after Victor's death and with Eric (instead of Victor or Corinne) was a bit surreal. It didn't help that I mistakenly referred to Eric as 'Victor' more than once when describing his symptoms. The ENT doctor didn't have the digital CT scan from our local hospital yet, so his preliminary surgery plan was based on their dire written report. He planned on resecting (removing) the very swollen mass (about the size of 1.5-2 golf balls), with a large incision along Eric's jawline and possibly jeopardizing a facial nerve. I don't think the doctor appreciated my insistence on a nerve graft by a pediatric neurosurgeon in case there was damage, but he also didn't know that we'd heard before several of the chilling phrases that he used: "our first priority will be to save his life", "there's only a small chance that we'll have to cut the nerve", "nerve grafts in this area don't usually work".
The whole plan changed on Friday morning just before surgery. When the doctors and radiologists at Children's reviewed the digital CT scans, they disagreed with our local hospital's conclusions. Instead, they (correctly) thought that a fluid-filled infection had encapsulated itself in a lymph gland. So the surgery plan changed to a small incision to biopsy the site and drain as much as possible. That hopeful news was a relief to us as we waited. It was also a blessing to have a pastor and a few friends come and share our vigil, along with a periodic hug from hospital staff friends passing in the cafeteria. Even better was the relief (and exhaustion) that followed a good post-surgery report.
Since then, we've received daily updates from many of the medical staff who still have their hand 'in the pot' so to speak, particularly those that know us well. On the way to a soccer game, one of the oncologists called me to fully explain Eric's current pathology findings. I asked her how long it might take for the lump on his neck to resolve, and she said that she had no idea, because in cases like this, normally the oncology group pulls out of the medical 'picture' as soon as cancer is ruled out, leaving the ENT group to follow up. But she said that in this case, because it was the Watters family, 'everyone wanted to know'. She said that on Friday when the surgery results were in, she posted a note to the entire oncology staff with the news, "It's puss!" (an infection), and from her desk, she could hear a cheer go up down the hall from everyone at the nurses station. That made me smile... who would have thought that word could sound so good?
We go in on Thursday for a followup appointment. Please pray for Eric to continue to heal.
Many are wondering how we all are coping with Victor's loss. Unfortunately there's no good gauge for such things, but I think we are doing pretty well. We don't mind crying if we feel like it ... or laughing afterwards. And we've told the kids to expect that they might feel the urge to cry at inopportune moments in public...and that was ok too. We just press on.
Meghan's reaction to all of this is hard for me. She and Victor were so close. When Victor's health was failing, we would let her watch Victor sleeping and tell her that Victor was going 'Ni-night' and that he was going 'Bye-bye'. She's not yet two. But the first time we said it, she frowned and said, "NO bye-bye". Now we tell her, among other things, that Victor went bye-bye to give Jesus a big hug. She used to say 'Di-der' (Victor) all the time, but now when the kids ask her to say his name, she just says what she feels; she says, "Bye-bye" and "Ni-night". At bedtime when I tuck her in, I always say, "Mommy loves you, Daddy loves you, Elise loves you, (etc) ... but Jesus loves you MOST of all." She has always joined in to say her sibling names at random, making sure I get them all or trying to stall the bedtime process. But now whenever I get to Victor's name, she says 'Bye-bye' very seriously, then looks intently into my eyes and says 'eye' as she points to my tears. A few days ago, Corinne brought Meghan in to snuggle in bed with me early in the morning. The three of us lay in bed getting warm under the covers. I pointed to her cast where she knows that Victor had signed if first (he wrote 'VICTOR' in big letters and 'I love you'). Corinne said, "Meghan, say Victor", but Meghan innocently said 'Bye-bye'. Then she thought a minute and said, "May-may bye-by". She calls herself 'May-may'. When Corinne and I realized that she was trying to say that she wanted to go where Victor was, we both let ourselves cry into the bedsheets. Then Meghan tried to help me dry my tears with the sheets. AND I'm crying now as I recall it ... but at the same time, I know that it is ok to let the tears flow. It is part of the healing.
I remember talking about tears with Victor as we were preparing to leave the hospital with him for the last time (after he got his PIC line). Mike and I were in the room alone with him and I asked him if he would do me a favor. I wanted to video him saying 'I love you Mom and Dad' so that I could always hear him say it. My request made him sob (along with us). He said "Ok, I'll do it, but not right now.... I'm just going to miss you SO much!" That made me laugh through my tears. I told him that WE were going to do all the missing, but HE was going to have all the joy, and I reminded him that in heaven there is 'no more crying or mourning or pain or tears' (Revelation 21). In fact, one of his very favorite verses was in Revelation 7, where Jesus 'wipes every tear from their eye'. In the week before he died, he fervently reminded his biological siblings of that verse .... but that's another story for another day. For now, as we mourn, we find comfort in God as He delivers on His promise of comfort and we look forward to the day when we will be together again. We also give thanks that He's given us eyes to see that it is NOT by our own strength that we persevere.