Today we got an enigmatic phone call from Nic's nurse coordinator, Vicki. I may be reading too much into it, but after I hung up I had that horrible sinking feeling in my gut. Vicki called to let me know that the hematologist still hasn't called us about Nic's tests because Mayo clinic hasn't provided the results from the final, most definitive test for Nic's condition. She said that the doctor would be calling us as soon as he got the results for that test. I asked if that meant we could cancel next week's appointment to go over the test results, and she checked with the doctor and said we should plan on coming in still.
That sounds benign, right? But here's the rub: while we were in the hospital last week, when the hematologist said that he thinks Nic has sickle/HPFH instead of sickle cell disease, he said that if Nic had HPFH then we could cancel our appointment for next week because he wouldn't need to see us again so soon, as he only has to see patients with sickle cell trait (and HPFH would be similar to trait) infrequently.
Last week he thought Nic had HPFH and didn't need an appointment. This week we got no indication on what the hematologist is thinking, except that he wants us to come for an appointment. In my experience with specialists delivering really awful news about the health of one's child, they tend to like to do it in person. I'm not exactly thrilled that the hematologist wants to sit in an office with me, because in my book that means bad news. Now, I could be paranoid. I could be reading way more into this than I should. I know that, but I can't help but wonder why he has changed his tune about us showing up for the appointment.
This leads me to the real problem with all this - the sinking feeling. When Nic was first diagnosed I feel like we were able to adjust to his diagnosis about as gracefully as possible considering. The hematologist was clear that there was only an outside chance that Nic had something other than sickle cell disease. In my head, that meant that Nic had sickle cell disease. Obviously, I prayed that the diagnosis would be incorrect, but I found that it was easiest for me to cope with the diagnosis if I really believed it. I have full confidence that God placed Nicolas in the care of our family. It was no mistake or coincidence that we were chosen to parent this sweet boy, and if that meant parenting a boy with sickle cell disease, well, then that was our calling. My thoughts were such that when I envisioned our future, it was one where we made serious concessions to sickle cell disease. With a family like ours we are obviously not moving to the sticks anytime soon, but SCD meant taking the proximity and quality of local medical care into a far higher consideration when we think about where we will live. It meant viewing Nic's future in a different perspective, and acknowledging limits on things that our family can do. Honestly, it was highly unlikely that we would ever do any family mountain climbing, for example, but we certainly won't be if Nic has SCD (let me reiterate that for Jeff and me giving up mountain climbing would not be a sacrifice). But more realistically, when I planned our family vacation this year, I made sure to ask about the refund policy of the place we chose to stay, because we might be heading to the ER instead of going on vacation.
When we were getting ready to go to the emergency room last week, and in those first few hours at the hospital, I found myself making a lot of mental notes for "next time." Next time, I would keep a bag ready just for emergency trips, I would make a master list to check off the things we need before we head out the door, I would make a list phone numbers for Nic's medical folder (instead of just grabbing the church directory), I would pack more pjs for Nic and fewer toys, I would think about getting some type of portable computer for long stays (an iPad would be so helpful in the hospital and make a great Christmas present for me and Nic, Mom and Dad;-)), and I would keep some decent freezer meals for Jeff and me to take to the Peds kitchen. One can only live on muffins and Teddy Grahams for so long. I was in SCD mode. I had my head wrapped around it. Then, the hematologist said he might take back the whole SCD diagnosis, and he wasn't saying it was a tiny little chance, he was saying it was a good chance.
When he did that, he gave us hope. Hope that our son might outlive us. Hope that he might not suffer from pain crisis, develop lung issues, and sustain damage to his major organs. Hope that he might be able to participate in any sport or activity that he enjoys. Hope that he might not have to go to the hospital every single time he gets a fever. Hope that we won't have to cart around a cooler with penicillin every time we are away from the house at medicine time. I set aside this hope after Nic's original diagnosis, but I like having it back. I don't want to have to give it up again.
Needless to say, I have felt significantly less sane in these last few hours since that phone call. I'm a bit frustrated by this, because we have made it so far in this wait, and we hopefully have less than a week to go before we meet with the hematologist and get our results, and this has messed up my waiting rhythm. All that to say, please pray for us. The home stretch of this wait is clearly going to be tougher than I anticipated. Add to that the horrendous weather that has kept us inside more than we like to be all week long, and two boys who seem incapable of napping in tandem, and I might be a crazy person by the end of the week.
That sounds benign, right? But here's the rub: while we were in the hospital last week, when the hematologist said that he thinks Nic has sickle/HPFH instead of sickle cell disease, he said that if Nic had HPFH then we could cancel our appointment for next week because he wouldn't need to see us again so soon, as he only has to see patients with sickle cell trait (and HPFH would be similar to trait) infrequently.
Last week he thought Nic had HPFH and didn't need an appointment. This week we got no indication on what the hematologist is thinking, except that he wants us to come for an appointment. In my experience with specialists delivering really awful news about the health of one's child, they tend to like to do it in person. I'm not exactly thrilled that the hematologist wants to sit in an office with me, because in my book that means bad news. Now, I could be paranoid. I could be reading way more into this than I should. I know that, but I can't help but wonder why he has changed his tune about us showing up for the appointment.
This leads me to the real problem with all this - the sinking feeling. When Nic was first diagnosed I feel like we were able to adjust to his diagnosis about as gracefully as possible considering. The hematologist was clear that there was only an outside chance that Nic had something other than sickle cell disease. In my head, that meant that Nic had sickle cell disease. Obviously, I prayed that the diagnosis would be incorrect, but I found that it was easiest for me to cope with the diagnosis if I really believed it. I have full confidence that God placed Nicolas in the care of our family. It was no mistake or coincidence that we were chosen to parent this sweet boy, and if that meant parenting a boy with sickle cell disease, well, then that was our calling. My thoughts were such that when I envisioned our future, it was one where we made serious concessions to sickle cell disease. With a family like ours we are obviously not moving to the sticks anytime soon, but SCD meant taking the proximity and quality of local medical care into a far higher consideration when we think about where we will live. It meant viewing Nic's future in a different perspective, and acknowledging limits on things that our family can do. Honestly, it was highly unlikely that we would ever do any family mountain climbing, for example, but we certainly won't be if Nic has SCD (let me reiterate that for Jeff and me giving up mountain climbing would not be a sacrifice). But more realistically, when I planned our family vacation this year, I made sure to ask about the refund policy of the place we chose to stay, because we might be heading to the ER instead of going on vacation.
When we were getting ready to go to the emergency room last week, and in those first few hours at the hospital, I found myself making a lot of mental notes for "next time." Next time, I would keep a bag ready just for emergency trips, I would make a master list to check off the things we need before we head out the door, I would make a list phone numbers for Nic's medical folder (instead of just grabbing the church directory), I would pack more pjs for Nic and fewer toys, I would think about getting some type of portable computer for long stays (an iPad would be so helpful in the hospital and make a great Christmas present for me and Nic, Mom and Dad;-)), and I would keep some decent freezer meals for Jeff and me to take to the Peds kitchen. One can only live on muffins and Teddy Grahams for so long. I was in SCD mode. I had my head wrapped around it. Then, the hematologist said he might take back the whole SCD diagnosis, and he wasn't saying it was a tiny little chance, he was saying it was a good chance.
When he did that, he gave us hope. Hope that our son might outlive us. Hope that he might not suffer from pain crisis, develop lung issues, and sustain damage to his major organs. Hope that he might be able to participate in any sport or activity that he enjoys. Hope that he might not have to go to the hospital every single time he gets a fever. Hope that we won't have to cart around a cooler with penicillin every time we are away from the house at medicine time. I set aside this hope after Nic's original diagnosis, but I like having it back. I don't want to have to give it up again.
Needless to say, I have felt significantly less sane in these last few hours since that phone call. I'm a bit frustrated by this, because we have made it so far in this wait, and we hopefully have less than a week to go before we meet with the hematologist and get our results, and this has messed up my waiting rhythm. All that to say, please pray for us. The home stretch of this wait is clearly going to be tougher than I anticipated. Add to that the horrendous weather that has kept us inside more than we like to be all week long, and two boys who seem incapable of napping in tandem, and I might be a crazy person by the end of the week.
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2 comments:
Amy
You and Jeff and Nic (especially) and Tommy are in my prayers. I love you.
Continuing our prayers.
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