All the second opinions are in, plus two more from the team at Johns Hopkins and Dr. Norbert Liebsch, a world-reknown radiologist at Mass General. All of them say the same thing: Wait and see. After talking to Dr. Liebsch today, I continue to feel a lot more comfortable with the idea of waiting. He has been beyond nice and super helpful, despite the fact that K has something that doesn't fall into his area of interest (Chordomas) and that he's an extremely busy man. This says a lot about how much he cares about curing kids ... from whatever it turns out to be that ails them. We feel blessed to have a great team here at Denver Children's, but it's also nice to have other eyes focused on K's case, as well.
The next MRI scan is scheduled for mid-August, so unless K's symptoms worsen and we have to scan earlier, we won't know anything until then. It's nice to see her playing and being a normal kid, but it's hard to hear her complaining that her head hurts a lot. Her bouts with headache and sometimes dizziness mostly occur in the middle of the night, first thing in the morning or in the afternoon-evening. At least during the bulk of day, she can have a lot of fun without being in pain.
Daily miracles and blessings ... we thank Heavenly Father for them every day!
Thursday, June 14, 2012
Wednesday, June 6, 2012
Scream ... Take a breath ....
Yesterday morning I wanted to scream. Yesterday afternoon, I felt I could finally take a breath again. It has been a roller-coaster ride, to say the least. We had the NMO test results on Monday and they came back negative. All the markers for MS have been negative, but apparently, about 20-25 percent of the people with MS don't have positive markers. So it's not ruled out. However, the general consensus of the doctors here is STILL to wait. I could not for the life of me understand why we should not do a biopsy now, because the longer we wait, the more that lesion/tumor/mass whatever it is could be growing inside K's brain. I'm not a fan of risky brain surgery, but at the same time I'm not a fan of letting a possibly workable situation turn into an impossible, terminal one.
OK, that's how I felt yesterday morning.
Then we had a conference with the neurosurgeon, the neuro-oncologist and the neurologist about what we are doing going forward. At first the neurosurgeon said he would like to wait up to three months. That didn't give Steve and me warm fuzzies, to say the least. The argument is, the longer you wait, the more information you'll get. But it's a fine line between waiting enough time and waiting too long. Too bad nobody knows exactly where that line is. But the neurosurgeon understood our anxiety level and the neurologist weighed in that 6-8 weeks is probably more feasible. The condition that K will be go in for a neurological exam every week or so in the meantime made us feel a bit more comfortable. We also know what to look for here at home as far as neurological changes. As long as she remains what they call 'asymptomatic,' (mild headaches and dizziness don't really count as symptoms right now) the chances are slim to none that the tumor, if it turns out to be that, is doing anything fast. Also, waiting this time will allow a demyelinating lesion, if that's what it turns out to be, to 'cool down' (shrink slightly or even resolve itself completely). The scan after that time passes could tell them a lot. While we're waiting, we decided to ship another request for a second opinion off to Johns Hopkins and to Dr. Norbert Liebsch, a world-reknowned radiologist and researcher at Mass General (he deals mainly with Chordomas, which K does not have, but he was happy to look at K's scans and pass them around to his team for evaluation).
So, I felt better that afternoon.
Now, we wait, we watch, we pray, and we listen for divine guidance - but we also have decided to put the worry away as best as possible and enjoy our summer. I realize, and I think Steve does, too, that we have been absolutely useless to our children, our home and his work for the past two or so weeks. We're making the conscious decision to take ourselves off the worry train for the next 6-8 weeks. No more Internet searches, no second-guessing, no more second opinions (we have plenty), no more sitting on the couch in a daze wondering about what happens next. The kids deserve better - we deserve better.
I will keep you up to date on K's exams and what happens after we talk to the demyelinating specialist next week. And, of course, I'll let you know if anything changes. Thank you for your continued prayers. We feel the comfort from them every day. I told Steve that even though the Lord has not told us what K has or shown us a well-lit, clear path before us, I feel that the Lord has provided just enough light for each successive step forward. This, I feel, is a great blessing.
Now, let the summer begin!
OK, that's how I felt yesterday morning.
Then we had a conference with the neurosurgeon, the neuro-oncologist and the neurologist about what we are doing going forward. At first the neurosurgeon said he would like to wait up to three months. That didn't give Steve and me warm fuzzies, to say the least. The argument is, the longer you wait, the more information you'll get. But it's a fine line between waiting enough time and waiting too long. Too bad nobody knows exactly where that line is. But the neurosurgeon understood our anxiety level and the neurologist weighed in that 6-8 weeks is probably more feasible. The condition that K will be go in for a neurological exam every week or so in the meantime made us feel a bit more comfortable. We also know what to look for here at home as far as neurological changes. As long as she remains what they call 'asymptomatic,' (mild headaches and dizziness don't really count as symptoms right now) the chances are slim to none that the tumor, if it turns out to be that, is doing anything fast. Also, waiting this time will allow a demyelinating lesion, if that's what it turns out to be, to 'cool down' (shrink slightly or even resolve itself completely). The scan after that time passes could tell them a lot. While we're waiting, we decided to ship another request for a second opinion off to Johns Hopkins and to Dr. Norbert Liebsch, a world-reknowned radiologist and researcher at Mass General (he deals mainly with Chordomas, which K does not have, but he was happy to look at K's scans and pass them around to his team for evaluation).
So, I felt better that afternoon.
Now, we wait, we watch, we pray, and we listen for divine guidance - but we also have decided to put the worry away as best as possible and enjoy our summer. I realize, and I think Steve does, too, that we have been absolutely useless to our children, our home and his work for the past two or so weeks. We're making the conscious decision to take ourselves off the worry train for the next 6-8 weeks. No more Internet searches, no second-guessing, no more second opinions (we have plenty), no more sitting on the couch in a daze wondering about what happens next. The kids deserve better - we deserve better.
I will keep you up to date on K's exams and what happens after we talk to the demyelinating specialist next week. And, of course, I'll let you know if anything changes. Thank you for your continued prayers. We feel the comfort from them every day. I told Steve that even though the Lord has not told us what K has or shown us a well-lit, clear path before us, I feel that the Lord has provided just enough light for each successive step forward. This, I feel, is a great blessing.
Now, let the summer begin!
Sunday, June 3, 2012
The Latest Is That We Still Don't Know
Our neurosurgeon here says demyelinating lesion (MS). Our neuro-oncologist says tumor. Philadelphia Children's Hospital is coming in with the same inconclusive conclusion in its second opinion. So now we wait for one final MS marker test (NMO) to come in early this week. We also await the second opinion from Boston Children's. If the NMO is positive, there is a strong case for MS. However, if the NMO is negative, it does not rule out MS completely. The docs at Denver all agree that if the results are negative, we adopt a 'wait and see' approach and re-scan in 4 weeks. "Can you guarantee that if this turns out to be a tumor, it won't grow a lot in 4 weeks?" I asked our neuro-oncologist. "We are pretty sure that this is low-grade if it is a tumor, but no, we can't guarantee that without knowing exactly what it is," she answered.
I wonder sometimes why every health issue my children have has to be 'atypical' and complicated?
Time for more prayers!!
I wonder sometimes why every health issue my children have has to be 'atypical' and complicated?
Time for more prayers!!
Thursday, May 31, 2012
Waiting ...
... is the worst part. We wait for test results to come back. We wait to have a definitive diagnosis. We wonder if whatever it is on K's brain is getting worse as we wait. We hope and pray to know soon in which direction we need to move for her care.And while we wait, we do our best to focus on the daily routine of life, but sometimes find ourselves worried into a state of general paralysis. The needs of other family members go unmet, important activities are forgotten, patience wears thin, and basic household tasks feel like a daily hike up Mt. Everest. Thankfully, those times do not come that often and prayer and service are good antidotes. I find myself praying A LOT these days.
The things we have learned through two childhood health crises are perhaps these - that science is anything but exact; the medical profession often leaves you with more questions than answers; doctors are not gods; and finally, that if we did not have our faith in a God who is greater and more wise than all of the science in the world of man, we would be truly lost when situations like this arise.
The things we have learned through two childhood health crises are perhaps these - that science is anything but exact; the medical profession often leaves you with more questions than answers; doctors are not gods; and finally, that if we did not have our faith in a God who is greater and more wise than all of the science in the world of man, we would be truly lost when situations like this arise.
Monday, May 28, 2012
A Good Day
Today is Memorial Day. It is a day to be grateful to our men and women in uniform (and their families) over the past 250 years who have protected the freedom we enjoy today. Thank you!
Today is also a day to be thankful for family and good friends and neighbors. All your well-wishes on Kaitlyn's behalf have been truly heartening. I don't know where we'd be without your love and support. We feel the daily blessings of Heaven pouring down on Kaitlyn and the rest of our family. Thank you, thank you, thank you!
Today is also a day to be thankful for family and good friends and neighbors. All your well-wishes on Kaitlyn's behalf have been truly heartening. I don't know where we'd be without your love and support. We feel the daily blessings of Heaven pouring down on Kaitlyn and the rest of our family. Thank you, thank you, thank you!
Sunday, May 27, 2012
Exactly one week ago today, I was at the Children's Hospital with my youngest daughter. She had been complaining of dizziness and headaches and since she shares a genetic disorder with her older sister (elevated Lipoprotein-a, which carries a stroke risk), the neurologist felt she needed an MRI/MRA to rule out any potential clotting issues in her head and neck. You see, her older sister suffered two strokes - one at about a year and another at about 15 months. She is fully recovered now, but needs to remain on low-dose Coumadin to keep her blood at a normal clotting level. My youngest, though she shares the disorder (the only link doctors can pinpoint as to the cause of the strokes), has been asymptomatic all her life. So, we were concerned that these headaches and dizziness could be her following in her older sister's footsteps.
My younges got through the MRI and MRA just fine. The radiology tech asked us to wait for the neurologist to come down and chat with us about the results, so we were just relaxing in the room watching the Disney Channel. When the doctor arrived, I was pleased to see it was my older daughter's neurologist on-call that day. A familiar face in what seemed like a near-empty hospital that morning. What I didn't like was the worried look on her face when she escorted me out of the room to talk to me alone. That is when she broke the news that they had found a lesion in Kaitlyn's brain. She said 'brain tumor' and everything slipped into slow-motion after that. Since that morning, we have had several tests on Kaitlyn, including a spinal tap most recently. Before doing a risky biopsy - the lesion is in the brainstem, the most delicate, and hence inoperable, part of the brain - the neurosurgeon felt it was important to rule out any inflammatory diseases, like MS, that could have caused the lesion. We'll find out more on those test results this next week.
Shock, disbelief, tears, hope - all have been a part of our lives this past week. Last Sunday seems like a lifetime ago. In an effort to regain some normalcy in our lives, we took the weekend off from life and spent a day and a half in Colorado Springs. It was nice to get away with our children. My youngest said it was nice to get away from the hospital, where she had spent at least a few hours almost every single day this week. Tomorrow is Memorial Day. Tuesday, real life will intrude on us once more. There will be more test results, possibly more tests, and more conferring among the doctors and surgeons. It's all simply mind-numbing to think about, but when you have a family, you can't crawl into the black hole of shock just because one member is really sick. We have two other daughters - one with health concerns of her own - and my youngest still has end-of-school activities she wants to attend. My husband has a job and I have a home to keep running. In a way, all this is a blessing, as my daughters' pediatrician pointed out recently. We can't afford to let ourselves be in shock for very long, and as such, we will be stronger and have more clarity in dealing with our youngest child's illness.
My heart goes out to every parent who has ever had a seriously ill child. I told my Heavenly Father after my middle child's strokes that I wasn't strong enough to handle another serious health issue with my children. He apparently did not agree with me, though He gave me a respite of almost 10 years between crises. But He also has not left me and my husband comfortless. Our bishop and my husband gave my youngest a blessing of health last Sunday and we have great faith that she will be able to overcome this illness and live a long and healthy life. We don't know how or what trials lie ahead, but we will 'trust in the Lord and lean not unto [our] own understanding.' It is the only thing we can do right now.
As the days go on, I will post updates on what is happening in this journal of sorts. Who knows, maybe this will be a comfort to someone going through the same thing. In any case, this daily chronicle will be a blessing to my family members and that is perhaps the most important thing right now.
My younges got through the MRI and MRA just fine. The radiology tech asked us to wait for the neurologist to come down and chat with us about the results, so we were just relaxing in the room watching the Disney Channel. When the doctor arrived, I was pleased to see it was my older daughter's neurologist on-call that day. A familiar face in what seemed like a near-empty hospital that morning. What I didn't like was the worried look on her face when she escorted me out of the room to talk to me alone. That is when she broke the news that they had found a lesion in Kaitlyn's brain. She said 'brain tumor' and everything slipped into slow-motion after that. Since that morning, we have had several tests on Kaitlyn, including a spinal tap most recently. Before doing a risky biopsy - the lesion is in the brainstem, the most delicate, and hence inoperable, part of the brain - the neurosurgeon felt it was important to rule out any inflammatory diseases, like MS, that could have caused the lesion. We'll find out more on those test results this next week.
Shock, disbelief, tears, hope - all have been a part of our lives this past week. Last Sunday seems like a lifetime ago. In an effort to regain some normalcy in our lives, we took the weekend off from life and spent a day and a half in Colorado Springs. It was nice to get away with our children. My youngest said it was nice to get away from the hospital, where she had spent at least a few hours almost every single day this week. Tomorrow is Memorial Day. Tuesday, real life will intrude on us once more. There will be more test results, possibly more tests, and more conferring among the doctors and surgeons. It's all simply mind-numbing to think about, but when you have a family, you can't crawl into the black hole of shock just because one member is really sick. We have two other daughters - one with health concerns of her own - and my youngest still has end-of-school activities she wants to attend. My husband has a job and I have a home to keep running. In a way, all this is a blessing, as my daughters' pediatrician pointed out recently. We can't afford to let ourselves be in shock for very long, and as such, we will be stronger and have more clarity in dealing with our youngest child's illness.
My heart goes out to every parent who has ever had a seriously ill child. I told my Heavenly Father after my middle child's strokes that I wasn't strong enough to handle another serious health issue with my children. He apparently did not agree with me, though He gave me a respite of almost 10 years between crises. But He also has not left me and my husband comfortless. Our bishop and my husband gave my youngest a blessing of health last Sunday and we have great faith that she will be able to overcome this illness and live a long and healthy life. We don't know how or what trials lie ahead, but we will 'trust in the Lord and lean not unto [our] own understanding.' It is the only thing we can do right now.
As the days go on, I will post updates on what is happening in this journal of sorts. Who knows, maybe this will be a comfort to someone going through the same thing. In any case, this daily chronicle will be a blessing to my family members and that is perhaps the most important thing right now.
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