Okay...so I admit it...I'm a bit of a skeptic...especially when it comes to medical care. (Anyone remember the surgery I walked out of AFTER I'd been in pre-op for several hours and already had an IV in my hand?) I have learned over the years to be thankful for the doctors into whose care we have entrusted ourselves ...but I still need answers to my (fairly extensive) list of questions. So I arrived at Nathanael's check-up with a full printed page of them. When we saw the doctor she was thrilled with how Nathanael looked, and was so excited to see him. (I love this about her - she's a world renowned expert in her field, who still takes the time to personally care for each patient, and even addresses them directly, despite their young age.)
When I asked the "big question" (i.e. "What does his immune response look like?") she responded with "terrific" and I think tears welled up in my eyes. I have waited 20 months to hear this, and the moment did not disappoint. We spoke at length, maybe 30-40 minutes, and she answered all of our questions. (Of course, since then I have thought of several...I think I'm going to email our RN coordinator this week.) She even said, "Go ahead and treat him like a normal baby." I was floored. "Take him to church?" I asked, hesitantly. "Yes," she said as she smiled confidently, "and even put him in the nursery." Wow. He had NEVER been to our church, and of course, his daddy is the pastor! So his "introduction" to our church family (as well as a re-introduction for Jamison and I, absent the better part of Nathanael's life) was this past Sunday, May 8, Mother's Day. How's that for God's perfect timing?!
But back to the conversation with our doctor: we never did look at the actual lab results together. Given my usual skepticism, I looked at the numbers as soon as Nathanael and I were back in the hospital courtesy van headed home. When I saw them, I was confused. When I saw CD8 (one of his T cell numbers) at 19% I didn' know what to think. How could 19% of ANYTHING be any good? Of course, then I looked at the range, which was listed as 11-32%. Whew! I guess 19% is in the middle of the range...pretty good. Of course, the absolute values made me feel better as well. The CD8 value was 871, and the range listed was 400-2300. So in most of the values he's on the LOW end of normal, but the fact that he's even in the normal range just blows me away. After 17 months of excruciatingly difficult treatment, my baby is well. Thank you Jesus!
While I feel a great sense of relief, there is a sense of fear that has crept into my mind. Yes, I did anticipate this, as we have lived such an isolated life for so long that freedom seems scary. So how do I change my life back to "normal" without my baby - and my big boy, who has basically taken a year off from normal immune development by not getting sick and building up his immunity - getting sick all the time? I have already begun to face this fear head on, as our travels back put us in a situation to eat out with the boys on the way home last Thursday. We left from Cincinnati around 10:30am, and landed in Evansville, IN, where our pilots wanted to eat at Denny's just down the road from the airport. I was a little nervous, but agreed that we could indeed "treat him like a normal child" and take the boys out to eat. (We did still wipe down the table and booster seats first...I'm not going out ASKING for trouble!) I did get a little nervous that there would be smoking, as I've been told that exposure to smoke increases the risk of respiratory illness, and I don't want to increase risks like this, but was quickly reassured by the hostess that there was not. It was also nice that the place was not crowded, and we sat in a corner. So I faced that fear, took some normal precautions, and am "baby-stepping" towards a less isolated, more normal life. Yay! Again, thank you Jesus!
Tuesday, May 10, 2011
Monday, May 9, 2011
"Getting there is half the fun..."
So by now many of you have heard of our unplanned adventure last weekend as we traveled to Cincinnati for Nathanael's check-up. When we learned on Friday that we had two of the three pilots needed for our trip (through Angel/Grace Flight) we began to look for someone to drive us to Little Rock, AR. (Brad had just undergone a procedure that made driving for any length of time pretty uncomfortable.) Once some friends had been located for the job, I finished packing, put things in the car, and tried to get some sleep.
The next day the boys and I left the house around 6:00am, picked up our friends at their home, and were on our way - planning to meet our pilot around 11:00am. About halfway there we got a call from our pilot, who told us that he had tried to take off from his home in St. Louis, and had to turn back due to turbulence. H
e apologized profusely, but told me that it was not a good day to fly, as he didn't want any of us to get sick. We called the Angel/Grace Flight on-call coordinator, who told us that we could try on Monday to start again, but could not put together a whole mission (involving three pilots, flight plans - a complicated process) over the weekend. Since our appointment was Wednesday, our friends graciously looked at me and said, "We can keep driving...it's really important that you get there."
We knew my parents were en route from Milwaukee to Cincinnati, so we called them, and they were near Indianapolis. We looked at the map, and decided to both travel towards Tennessee to meet somewhere to help divide up the driving. We kept in contact and continued to check the map, and finally decided to meet in Jackson, TN, about halfway between Memphis and Nashville. We arrived there around 4pm (central time) and made the "hand off" where we moved the boys' car seats and all our stuff from the minivan into my parents' sedan. After we said our goodbyes (and thank you!) to our friends, we started the second half of our journey.
The boys were getting pretty tired and a little crabby. Jamison had not slept since 5:30am when I awakened him, and Nathanael had taken a few short naps in the morning, but was getting pretty tired of his car seat. At one point Jamison finally caved and fell asleep, but Nathanael continued to cry, so my mom sang to him (sitting next to him) until he finally gave up due to sheer exhaustion. Of course, when we arrived around m
idnight both boys woke up, but went back to sleep before too long.
Needless to say ALL of us were pretty worn out the next day, so after visiting with my parents, and brother and sister-in-law (who came down from Columbus) the boys and I all took naps! We were just SO THANKFUL to be there so we could see the doctor. It was so clearly God's provision that we had generous parties to drive us each half of our trip, AND, looking back, it was so good that we drove when we did, as all of the major highways were still passable at the time (though the flooding along much of our travel route was pretty extensive).
Please do keep in prayer the many people whose lives have been affected by the flooding and storms. Seeing it from the air on the way home was pretty amazing. Some farm houses looked like they were on small islands in the middle of lakes (formerly their fields), and rivers had swelled to twice their normal size.
In spite of how tiring car travel is (for the passengers, let alone the drivers!) we did enjoy our visits with our drivers, so that made the time pass quickly...well, more quickly than it would have without the good company! ;) So praise God with us for His provision for us.
The next day the boys and I left the house around 6:00am, picked up our friends at their home, and were on our way - planning to meet our pilot around 11:00am. About halfway there we got a call from our pilot, who told us that he had tried to take off from his home in St. Louis, and had to turn back due to turbulence. H
e apologized profusely, but told me that it was not a good day to fly, as he didn't want any of us to get sick. We called the Angel/Grace Flight on-call coordinator, who told us that we could try on Monday to start again, but could not put together a whole mission (involving three pilots, flight plans - a complicated process) over the weekend. Since our appointment was Wednesday, our friends graciously looked at me and said, "We can keep driving...it's really important that you get there."We knew my parents were en route from Milwaukee to Cincinnati, so we called them, and they were near Indianapolis. We looked at the map, and decided to both travel towards Tennessee to meet somewhere to help divide up the driving. We kept in contact and continued to check the map, and finally decided to meet in Jackson, TN, about halfway between Memphis and Nashville. We arrived there around 4pm (central time) and made the "hand off" where we moved the boys' car seats and all our stuff from the minivan into my parents' sedan. After we said our goodbyes (and thank you!) to our friends, we started the second half of our journey.
The boys were getting pretty tired and a little crabby. Jamison had not slept since 5:30am when I awakened him, and Nathanael had taken a few short naps in the morning, but was getting pretty tired of his car seat. At one point Jamison finally caved and fell asleep, but Nathanael continued to cry, so my mom sang to him (sitting next to him) until he finally gave up due to sheer exhaustion. Of course, when we arrived around m
idnight both boys woke up, but went back to sleep before too long.Needless to say ALL of us were pretty worn out the next day, so after visiting with my parents, and brother and sister-in-law (who came down from Columbus) the boys and I all took naps! We were just SO THANKFUL to be there so we could see the doctor. It was so clearly God's provision that we had generous parties to drive us each half of our trip, AND, looking back, it was so good that we drove when we did, as all of the major highways were still passable at the time (though the flooding along much of our travel route was pretty extensive).
Please do keep in prayer the many people whose lives have been affected by the flooding and storms. Seeing it from the air on the way home was pretty amazing. Some farm houses looked like they were on small islands in the middle of lakes (formerly their fields), and rivers had swelled to twice their normal size.
In spite of how tiring car travel is (for the passengers, let alone the drivers!) we did enjoy our visits with our drivers, so that made the time pass quickly...well, more quickly than it would have without the good company! ;) So praise God with us for His provision for us.
Saturday, April 9, 2011
Videos of Nathanael
Nathanael is becoming increasingly more mobile each day. Here's a clip showing how he crawls and pushes his toys around. (And yes, I did change his diaper immediately after I took this video!)
Here he is eating matzo for breakfast...he LOVES it...and loves to share it with me!
He also loves to cruise and push big toys around while walking. He has started to take 3-4 independent steps at a time, so it won't be long before he's off and running!
Here he is eating matzo for breakfast...he LOVES it...and loves to share it with me!
He also loves to cruise and push big toys around while walking. He has started to take 3-4 independent steps at a time, so it won't be long before he's off and running!
Saturday, March 12, 2011
Update on my desmoid
Many of you are aware of my long and colorful health history, including a history of desmoid tumors (rare, soft tissue sarcomas, considered by many to be "benign, but locally aggressive") in my right leg since 1998. I've had two surgeries, two rounds of radiation, 8 months of low-dose chemo and was on narcotics for pain for a full year. Not really fun.
However, I've been thankful for what has seemed like a reprieve in the past several years. My last check-up at MD Anderson Cancer Center in Houston was in March 2008...well, until just recently. Three weeks ago now I found a new nodule on the large tumor in my calf and called my doctor's office. They were able to get me scheduled and in for 3 MRIs (under sedation - to control the twitching in my leg due to nerve damage) and a doctor visit in less than 2 weeks' time, AND God provided housing and help (friends who graciously opened their home, and my mom who took off work and flew down to help us by watching the boys each day) so Brad and I could spend two days at the hospital.
On first review, my doctor told us he "was not at all worried," which was comforting. Then when my case was presented to a multidisciplinary team the following week they agreed that the tumor did not present as something new, and did not require immediate treatment. They would like to see more scans in 3 months, and would like me to meet with a medical oncologist (my main doctor there is currently a surgical oncologist, and more surgery does NOT seem like a good option for me in the foreseeable future). I suspect they will suggest chemotherapy, which, quite frankly, does not interest me at all. I spent 2/3 of a year exhausted (sleeping 12 hours a night!), depressed, and unable to do anything but eat, sleep, cry and go to work. To top it off, at the end of that year my tumor had become more dense, it caused more pain, I started on narcotics, and wound up having a surgery that caused a permanent drop in my right foot. So, I'll do some reading, send them my huge file from Ireland Cancer Center (UH Cleveland) and have them review my history, and then we'll talk about how long we can safely delay whatever it is they suggest. :) See how flexible I can be?(!)
Anyway, we would appreciate your prayers for our family and our church during this time, as this does add extra stress. We're praying that Nathanael (and therefore, Jamison and I) will be able to begin a more normal social life before he turns 2 this summer, but if I am in some kind of treatment that could change. Pray for God to be glorified in and through us.
For more on Nathanael, please see his COTA fundraising page: http://COTAforNathanaelB.com.
However, I've been thankful for what has seemed like a reprieve in the past several years. My last check-up at MD Anderson Cancer Center in Houston was in March 2008...well, until just recently. Three weeks ago now I found a new nodule on the large tumor in my calf and called my doctor's office. They were able to get me scheduled and in for 3 MRIs (under sedation - to control the twitching in my leg due to nerve damage) and a doctor visit in less than 2 weeks' time, AND God provided housing and help (friends who graciously opened their home, and my mom who took off work and flew down to help us by watching the boys each day) so Brad and I could spend two days at the hospital.
On first review, my doctor told us he "was not at all worried," which was comforting. Then when my case was presented to a multidisciplinary team the following week they agreed that the tumor did not present as something new, and did not require immediate treatment. They would like to see more scans in 3 months, and would like me to meet with a medical oncologist (my main doctor there is currently a surgical oncologist, and more surgery does NOT seem like a good option for me in the foreseeable future). I suspect they will suggest chemotherapy, which, quite frankly, does not interest me at all. I spent 2/3 of a year exhausted (sleeping 12 hours a night!), depressed, and unable to do anything but eat, sleep, cry and go to work. To top it off, at the end of that year my tumor had become more dense, it caused more pain, I started on narcotics, and wound up having a surgery that caused a permanent drop in my right foot. So, I'll do some reading, send them my huge file from Ireland Cancer Center (UH Cleveland) and have them review my history, and then we'll talk about how long we can safely delay whatever it is they suggest. :) See how flexible I can be?(!)
Anyway, we would appreciate your prayers for our family and our church during this time, as this does add extra stress. We're praying that Nathanael (and therefore, Jamison and I) will be able to begin a more normal social life before he turns 2 this summer, but if I am in some kind of treatment that could change. Pray for God to be glorified in and through us.
For more on Nathanael, please see his COTA fundraising page: http://COTAforNathanaelB.com.
Haircuts for the boys - Nathanael's first!
Just over two weeks ago I finally cut Nathanael's hair for the very first time (it was hanging in his face a little too much) - here are a few pictures of the process!
I should note that despite his age (18 mos) his hair has really only been growing for 15 mos because of his chemotherapy, whe
n almost all the hair he was born with fell out. I also should admit that because of this beautiful curls I just couldn't bring myself to cut the back yet, so yes, he does technically have a baby mullet. ;)
It was not easy for me to cut my baby's hair for the first time, but I did save some of those curly locks and put them in his baby book.
And of course Jamison was very cooperative - especially while watching a Veggie Tales on the computer during his turn!
Tuesday, February 15, 2011
Saturday, February 5, 2011
Happy 4th Birthday Jamison!
Jamison has been fascinated by dinosaurs recently (and yes, some of his passion has been fueled by "Dinosaur Train" on PBS...he sometimes tells me he wants to be a paleontologist...) so we decided to ha
ve a dinosaur birthday party. We invited a friend over, prepared some decorations (now that we have a computer and working printer we printed lots of coloring pages, colored them, pasted them to construction paper, and made our own dinosaur garland), and we used lots of toy dinosaurs (thanks Jerri for letting us borrow the big dinosaurs, and to my mom for sending so many little dinos and the T Rex shirt), and had lots of fun!
I made an *attempt* at a volcano cake, complete with orange "lava" coming out of it, surrounded by dinosaurs...it tasted delicious (the icing was made with my mom's homemade vanilla extract - feel free to ask her for the recipe!) but looked a little different than I had pictured in my head. At least Jamison recognized what it was!
Here we are singing to him with grandparents and cousins on the phone. Nathanael looks fascinated by the candles...does this mean I have THREE pyromaniacs in my house?!
After lunch there was lots more playtime, including climbing the ladder to the top bunk, and Jamison's favorite, "chasing Jackson with a meat-eating dinosaur so he hided (sic) in another room".
Not to be left out of the fun, Nathanael refused to nap while our friends were here...but he did watch the "big boys" play, and looked like he would have loved to join them!
All-in-all we had a great time, and are thankful for our friends and our birthday boy!
ve a dinosaur birthday party. We invited a friend over, prepared some decorations (now that we have a computer and working printer we printed lots of coloring pages, colored them, pasted them to construction paper, and made our own dinosaur garland), and we used lots of toy dinosaurs (thanks Jerri for letting us borrow the big dinosaurs, and to my mom for sending so many little dinos and the T Rex shirt), and had lots of fun!I made an *attempt* at a volcano cake, complete with orange "lava" coming out of it, surrounded by dinosaurs...it tasted delicious (the icing was made with my mom's homemade vanilla extract - feel free to ask her for the recipe!) but looked a little different than I had pictured in my head. At least Jamison recognized what it was!
Here we are singing to him with grandparents and cousins on the phone. Nathanael looks fascinated by the candles...does this mean I have THREE pyromaniacs in my house?!
After lunch there was lots more playtime, including climbing the ladder to the top bunk, and Jamison's favorite, "chasing Jackson with a meat-eating dinosaur so he hided (sic) in another room".
Not to be left out of the fun, Nathanael refused to nap while our friends were here...but he did watch the "big boys" play, and looked like he would have loved to join them!
All-in-all we had a great time, and are thankful for our friends and our birthday boy!
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