The Unknown
Part of what propelled me to start this blog is my current journey through the unknown. Or at least what I actually recognize as the unknown. Honestly, isn't all of life the journey through the unknown? Every day is full of unknown opportunities and experiences, but I digress...
Right now I face some big unknowns. My oldest child, my "Big," is facing some unknown and scary medical issues.
This girl is hardly sick, but when she is, she goes ALL OUT! When she was born, she had an infection and a 102 degree fever... and then she had severe jaundice and didn't get to come home until she was 7 days old. When she was 1 1/2 she had troubling blood work with an extremely elevated alkaline phosphatase level found after fighting an unexplained fever we couldn't bring down with meds. When she was 8 she severely dislocated her right elbow. Yes, she is right handed. Our local hospital couldn't get that sucker back in and she ended up at a children's hospital, prepped for surgery, when they finally got that sucker back in place (thankfully without surgery). The elbow was out of joint for 12 hours, resulting in lots of soft tissue damage, extreme limitation of range of motion for a while and a year...a FULL 12 MONTHS of physical therapy that was often painful. Last year, at age 10, she had a big old cyst removed from her big toe. The cyst was between the tendon and bone and had invaded the joint.
And now, today's unknown: Big has gigantic lymph nodes on the left side of her neck. And by gigantic I mean HUGE and NOTICABLE and PAINFUL when touched. It started exactly two weeks ago with a slightly enlarged lymph node. On day 5, it was still there and slightly bigger so we took a field trip to Urgent Care. They said since there was no fever or other symptoms, to just watch it. They did a strep swab, which was negative. They said to watch it and if it got bigger or she started running a fever, have her looked at. On day 8, of course a Saturday, Big woke up with a fever and the lymph node was having a party and invited some friends. She now had 3 visible lumps on the left side of her neck. And the original one had a diameter larger than a dime. So Big and I took another field trip, this time to the ER. A blood test and strep swab (and $200) later, we were back home with an antibiotic. It wasn't strep. The Mono test was negative. The antibiotic should take care of it and she should be A-OK for school on Monday.
But on Monday, day 10, she STILL had a fever and she STILL had the nodes and even more node friends had joined the party. Tuesday morning (Day 11) Big work me up when it was REALLY still the middle of the night. She was crying. She felt bad, she was hot. Her fever was up to 102.3, higher than it had been yet... and this was AFTER 3 FULL DAYS OF ANTIBIOTIC. Mom trusted her instinct and get Big into HER pediatrician.
Dr. S. is the BEST. Seriously. She trusts us mommas. She knows we KNOW when something isn't right. She didn't do a step swab (thank you, Jesus) because after 2 negative swabs it wasn't strep. She did a CBC blood test. And she scheduled Big for a neck ultrasound (that was done today). She told us to stop the antibiotic as it was obviously NOT doing anything. She told me to keep Big home until she was fever free. She scheduled a follow up appointment for Monday, after Friday's ultrasound results were in.
Big was fever free Wednesday and got to go back to school Thursday, taking the giant node party with her. She was acting normal (at least her version of normal) and felt good as long as no one touched the nodes.
Friday, today (day 14) we went to the hospital at 8 am for an ultrasound. We saw Node and his part going gang. One node and his girlfriend node are a little too close to one another, appearing on the outside as one GIANT node about the size of a little smoky you eat with BBQ sauce on New Years Eve. Three or four other nodes are really visible when you look at Big. And from the ultrasound we saw many other nodes we couldn't see from the outside that were lots bigger than they should be. Honestly, it was like a sack of fish eggs...there were just circles all over the ultrasound screen. After the scan, I took Big to school and finally met the secretary I have talked to 4 mornings in the past 2 weeks when calling Big off of school. Big, her younger sister, Little, and I were supposed to travel today after school to visit the grandparents and lots of other family at a big Pumpkin Festival. It is our FAVORITE annual activity and we have been counting down for weeks. I had the whole day off. I was going to run some errands, finish a grad school assignment so I wouldn't have to do homework while with family and get everything ready for our trip.
While I was eating lunch and reading the article my assignment covered, I got a call from Dr. S. She had already seen the ultrasound pics. She and the radiologist said it didn't look right. She said she FINALLY got Big's lab results from the ER (not the one in her network, and one we had never been to before...and can I say won't ever go back to). Although I asked for a CBC there and they took 2 vials of blood, they had only done a spot mono test, not the Epstein Barr we thought they had done. She said Big shouldn't travel, that it might still be mono and it would be risky for her to be around my preggo cousins and their cute little boys...and the rest of the family, too. She said we needed to get more bloodwork for the Epstein Barr test, and call a pediatric hematologist to get an appointment scheduled for next week. And she said the work "biopsy." If this test doesn't give us answers a biopsy might be in Big's future.
I left the restaurant (I had finished lunch and had just been working on homework when the call came), went to my car and called my mom and cried. No Pumpkin Festival, no cousins and kiddos and parade and candy. No pumpkin pancakes and visit with my grandma visiting from Arizona. And NO ANSWERS... only more questions.
So I went and picked up Big from school. I cried when I saw the secretary and told her what was going on now. I cried when I talked to the school nurse to give her an update. I told Big the trip was off and she had to go get blood drawn AGAIN (3rd time in a week, but maybe the third time is a charm). Big and I trekked to the lab. We chatted about what this might mean. Big, who HATES needles, was a CHAMP and didn't cry this time. It may have helped that I bribed her on the way there with a chocolate chip frappe from Starbucks (Thanks again, Elizabeth, for the gift card intended for P'Fest travel turned blood work bribe). And now we wait in the unknown.
The, as of yet, unnamed illness in my Big's body causing a node party. The unfinished story of this illness is heavy and it makes me cry...a lot. And this girl, my Big, just shines. If you know her, you know she loves Jesus so much. And she ALWAYS has... seriously...she has. As a toddler she cried once at naptime because she loved Jesus SO MUCH and wanted to go to heaven now. She read the whole Bible over the last year, because SHE wanted to. This girl, my Big, today shined. She reminded me that God still knows what he is doing. We heard the song, "Even If" by Mercy Me on the radio and she looked and me and said, "That's like this, Mom!" And she is right, it is. He is able. He can heal this. It might be nothing. But it might be something, and even if it is something terrible, HE IS STILL MY HOPE. And no matter what, it is well with my soul. I hate the unknown, the unnamed illness, the unfinished story. But MY GOD is still the author of it, and I know He is good, even if the diagnosis isn't.
Even If
Mercy Me
They say sometimes you win some,
Sometimes you lose some
And right now, right now I'm losing bad.
I've stood on this stage night after night,
Reminding the broken it'll be alright,
But right now, oh right now I just can't.
It's easy to sing
When there's nothing to bring me down,
But what will I say
When I'm held to the flame
Like I am right now?
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't, My hope is You alone.
They say it only takes a little faith To move a mountain.
Well good thing, A little faith is all I have, right now.
But God, when You choose to leave mountains unmovable.
Oh give me the strength to be able to sing It is well with my soul.
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't, my hope is You alone.
I know the sorrow, and I know the hurt,
Would all go away if You'd just say the word,
But even if You don't My hope is You alone.
You've been faithful, You've been good
All of my days, Jesus,
I will cling to You come what may,
‘Cause I know You're able... I know You can...
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't, my hope is You alone.
I know the sorrow, I know the hurt
Would all go away if You'd just say the word
But even if You don't My hope is You alone.
It is well with my soul..It is well, it is well with my soul.
This girl is hardly sick, but when she is, she goes ALL OUT! When she was born, she had an infection and a 102 degree fever... and then she had severe jaundice and didn't get to come home until she was 7 days old. When she was 1 1/2 she had troubling blood work with an extremely elevated alkaline phosphatase level found after fighting an unexplained fever we couldn't bring down with meds. When she was 8 she severely dislocated her right elbow. Yes, she is right handed. Our local hospital couldn't get that sucker back in and she ended up at a children's hospital, prepped for surgery, when they finally got that sucker back in place (thankfully without surgery). The elbow was out of joint for 12 hours, resulting in lots of soft tissue damage, extreme limitation of range of motion for a while and a year...a FULL 12 MONTHS of physical therapy that was often painful. Last year, at age 10, she had a big old cyst removed from her big toe. The cyst was between the tendon and bone and had invaded the joint.
And now, today's unknown: Big has gigantic lymph nodes on the left side of her neck. And by gigantic I mean HUGE and NOTICABLE and PAINFUL when touched. It started exactly two weeks ago with a slightly enlarged lymph node. On day 5, it was still there and slightly bigger so we took a field trip to Urgent Care. They said since there was no fever or other symptoms, to just watch it. They did a strep swab, which was negative. They said to watch it and if it got bigger or she started running a fever, have her looked at. On day 8, of course a Saturday, Big woke up with a fever and the lymph node was having a party and invited some friends. She now had 3 visible lumps on the left side of her neck. And the original one had a diameter larger than a dime. So Big and I took another field trip, this time to the ER. A blood test and strep swab (and $200) later, we were back home with an antibiotic. It wasn't strep. The Mono test was negative. The antibiotic should take care of it and she should be A-OK for school on Monday.
But on Monday, day 10, she STILL had a fever and she STILL had the nodes and even more node friends had joined the party. Tuesday morning (Day 11) Big work me up when it was REALLY still the middle of the night. She was crying. She felt bad, she was hot. Her fever was up to 102.3, higher than it had been yet... and this was AFTER 3 FULL DAYS OF ANTIBIOTIC. Mom trusted her instinct and get Big into HER pediatrician.
Dr. S. is the BEST. Seriously. She trusts us mommas. She knows we KNOW when something isn't right. She didn't do a step swab (thank you, Jesus) because after 2 negative swabs it wasn't strep. She did a CBC blood test. And she scheduled Big for a neck ultrasound (that was done today). She told us to stop the antibiotic as it was obviously NOT doing anything. She told me to keep Big home until she was fever free. She scheduled a follow up appointment for Monday, after Friday's ultrasound results were in.
Big was fever free Wednesday and got to go back to school Thursday, taking the giant node party with her. She was acting normal (at least her version of normal) and felt good as long as no one touched the nodes.
Friday, today (day 14) we went to the hospital at 8 am for an ultrasound. We saw Node and his part going gang. One node and his girlfriend node are a little too close to one another, appearing on the outside as one GIANT node about the size of a little smoky you eat with BBQ sauce on New Years Eve. Three or four other nodes are really visible when you look at Big. And from the ultrasound we saw many other nodes we couldn't see from the outside that were lots bigger than they should be. Honestly, it was like a sack of fish eggs...there were just circles all over the ultrasound screen. After the scan, I took Big to school and finally met the secretary I have talked to 4 mornings in the past 2 weeks when calling Big off of school. Big, her younger sister, Little, and I were supposed to travel today after school to visit the grandparents and lots of other family at a big Pumpkin Festival. It is our FAVORITE annual activity and we have been counting down for weeks. I had the whole day off. I was going to run some errands, finish a grad school assignment so I wouldn't have to do homework while with family and get everything ready for our trip.
While I was eating lunch and reading the article my assignment covered, I got a call from Dr. S. She had already seen the ultrasound pics. She and the radiologist said it didn't look right. She said she FINALLY got Big's lab results from the ER (not the one in her network, and one we had never been to before...and can I say won't ever go back to). Although I asked for a CBC there and they took 2 vials of blood, they had only done a spot mono test, not the Epstein Barr we thought they had done. She said Big shouldn't travel, that it might still be mono and it would be risky for her to be around my preggo cousins and their cute little boys...and the rest of the family, too. She said we needed to get more bloodwork for the Epstein Barr test, and call a pediatric hematologist to get an appointment scheduled for next week. And she said the work "biopsy." If this test doesn't give us answers a biopsy might be in Big's future.
I left the restaurant (I had finished lunch and had just been working on homework when the call came), went to my car and called my mom and cried. No Pumpkin Festival, no cousins and kiddos and parade and candy. No pumpkin pancakes and visit with my grandma visiting from Arizona. And NO ANSWERS... only more questions.
So I went and picked up Big from school. I cried when I saw the secretary and told her what was going on now. I cried when I talked to the school nurse to give her an update. I told Big the trip was off and she had to go get blood drawn AGAIN (3rd time in a week, but maybe the third time is a charm). Big and I trekked to the lab. We chatted about what this might mean. Big, who HATES needles, was a CHAMP and didn't cry this time. It may have helped that I bribed her on the way there with a chocolate chip frappe from Starbucks (Thanks again, Elizabeth, for the gift card intended for P'Fest travel turned blood work bribe). And now we wait in the unknown.
The, as of yet, unnamed illness in my Big's body causing a node party. The unfinished story of this illness is heavy and it makes me cry...a lot. And this girl, my Big, just shines. If you know her, you know she loves Jesus so much. And she ALWAYS has... seriously...she has. As a toddler she cried once at naptime because she loved Jesus SO MUCH and wanted to go to heaven now. She read the whole Bible over the last year, because SHE wanted to. This girl, my Big, today shined. She reminded me that God still knows what he is doing. We heard the song, "Even If" by Mercy Me on the radio and she looked and me and said, "That's like this, Mom!" And she is right, it is. He is able. He can heal this. It might be nothing. But it might be something, and even if it is something terrible, HE IS STILL MY HOPE. And no matter what, it is well with my soul. I hate the unknown, the unnamed illness, the unfinished story. But MY GOD is still the author of it, and I know He is good, even if the diagnosis isn't.
Mercy Me
They say sometimes you win some,
Sometimes you lose some
And right now, right now I'm losing bad.
I've stood on this stage night after night,
Reminding the broken it'll be alright,
But right now, oh right now I just can't.
It's easy to sing
When there's nothing to bring me down,
But what will I say
When I'm held to the flame
Like I am right now?
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't, My hope is You alone.
They say it only takes a little faith To move a mountain.
Well good thing, A little faith is all I have, right now.
But God, when You choose to leave mountains unmovable.
Oh give me the strength to be able to sing It is well with my soul.
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't, my hope is You alone.
I know the sorrow, and I know the hurt,
Would all go away if You'd just say the word,
But even if You don't My hope is You alone.
You've been faithful, You've been good
All of my days, Jesus,
I will cling to You come what may,
‘Cause I know You're able... I know You can...
I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't, my hope is You alone.
I know the sorrow, I know the hurt
Would all go away if You'd just say the word
But even if You don't My hope is You alone.
It is well with my soul..It is well, it is well with my soul.
Sometimes we have to put what we are feeling in words, and you, my friend, have an exceptional way doing so. I hope Baby Big Girl is on the mend soon! -hugs-
ReplyDeleteFather God,
ReplyDeleteWe pray that you would keep your hands of mercy, of love and of healing upon this child, called "Big." Protect her from unnecessary medical tests, grant her doctors the wisdom to discover what is happening in her body and then enable them to find the correct treatment to bring true healing to her. Keep her sweet, sweet spirit focused on you and your goodness and grace. Allow her to find peace in your presence and trust your will for her life. May her mother's heart know that same peace and continue to find you faithful in all things.
In His name we pray,
Amen