Brad, Bree & the Boys

Today I am thankful...

2012-01-25T17:53:00.000-08:00

Lately I have been thinking of what life used to be, in the early days post-transplant, and I've been reflecting on how thankful I am to NOT have to deal with many things that were once commonplace.

Today I am thankful...

...that washed laundry on the way to the dryer does not need to be re-washed if it lands on the floor.
...that tube-feeding overnight (and waking up every 3 hours to put more milk in the bag, then re-programming the pump, all while trying not to wake a sleeping baby) is a thing of the past.
...that we no longer have doctor/hospital visits 2-3 days a week, but sometimes only once a month!
...that it has been 8 months since the last time I stuck a needle into my baby for a subcutaneous injection (which we did once a week for about 8 months after his central lines were removed).
...that it has been 15 months since Nathanael's central lines were removed, and therefore our last cap and dressing change (a complicated, sterile procedure done weekly at home with the help of a home health nurse, where he would often scream for 15-30 minutes) was at least that long ago.
...that we no longer keep any distance between Jamison and Nathanael, as we did while Nathanael was still immuno-compromised. Today I only need to separate them for fighting!
...that we don't have to bleach all of his toys regularly, and that he can now pick up food off the floor and eat it!
...that I don't need to change clothes after being around other people or in public places.
...that the boys now go WITH me wherever I go, and can hug people, play with other kids, and not worry about using hand sanitizer all the time.
...that the only "medicines" I give on a regular basis are Elderberry syrup, Lithy Tree extract, vitamin D drops, and vitamin C. (Several of those are only really needed during cold/flu season, and Nathanael LIKES them, so there's no holding him down to get them in!)
...that I'm often found without hand sanitizer or Wet Ones (antibacterial) anywhere near me, even when they would be useful!

Exploring Erwin Park with friends

Precious little boys

I'm sure I'll think of more of these as time goes on...I was just thinking of them, and wanted to share just a few of the ways God has blessed us in recent months.

Fall Fun

2011-12-29T07:49:00.000-08:00

We like our trike!

Halloween fun with friends

My little dinosaur and shark

"Let's get that seat belt buckled."

"I love this!"

Playing at the park near our house

Riding the trike on the splash pad

"Now, how do I make a call?

"Hello? Can you hear me?"

Add caption

"Look, Mom, greenish, mixed-up play-dough!"

More fun on the trike - check out Nathanael's smile!

"Wow...this is harder than I thought it would be!"

Caught red handed...but what are they eating?

Pushing the shopping cart together

No, he's not supposed to be opening the utensil drawer...

...or putting a shampoo bottle in his mouth...

Raking leaves in the front yard

Mama's little helper

He had so much fun!

Someone likes to wash his own hands...

...playing with the soap...

...and grinning the whole time!

Running around at DTS

Playing on campus during a visit to Dallas Seminary

Playing with the outdoor umbrella together

On the road AGAIN?!

2011-12-25T18:27:00.000-08:00

With Uncle Jeff at Batelle in Columbus

At the end of October, all four of us once again piled into the car for a long road trip to Ohio to see Nathanael's doctor for his TWO YEAR post-transplant check-up. (Can you believe that November 23 was the two-year anniversary?) We took advantage of the fact that we would already be pretty far north to make visits to my family, including a trip to Wisconsin, where my parents and several of my cousins live.

In no particular order, here are some photo-highlights of our trip. I LOVED seeing my boys meet and play with their cousins and other relatives. It was such a great reminder of how blessed we are with a loving family, and boys healthy enough to be out and around everyone.

I should mention that we had a GREAT check-up with Nathanael's doctor, and even got to see a few of the nurses who worked with him during our inpatient stay. We LOVE our medical team! All news was good, and apart from orders to follow-up with our endocrinologists in Dallas, we were dismissed until sometime next year!

Waiting with Daddy at Cincinnati Children's

Watching the fish with H

Hanging out with "Miss Ruth"

Nathanael making himself at home in our hotel room

Jamison helping set up the Pack N Play

Playing with Pop Pop George...

...and Nanny Bonnie

Both boys loved riding the lawn mower!

We had family come over to celebrate my dad's birthday

Nathanael (2 yrs) and L (3 yrs)

Jamison loved playing outside with S (7 yrs)

D (18 mos) and Nathanael

Nathanael loved running around my parents' yard

My little Packer fans at Aunt Tera & Uncle Kevin's house

Discovering a Sit 'n Spin for the first time...he loved it!

M (8 yrs) helped him spin

Nathanael with S (7 yrs) on her birthday

Nathanael with Aunt Katie...

...having fun and being silly...

...and laughing a LOT...

...such fun!

Aunt Katie, Nathanael, and Nanny Bonnie

M, & S with our boys on S's birthday

Our little guys insisted on sitting on bar stools in my parents' kitchen

Snuggle time with Pop Pop George - two Packer fans!

Our boys with my parents, just before we left for Ohio

Clowning around with Nanny Bonnie and a hat and wig

Jamison stretching his legs at a rest stop

Nathanael loved drawing on his new doodle pad

All the first cousins together!

George, Jamison & Nathanael played together all morning

Saying "good-bye" to Uncle Guy

Playing with T & T in Cincinnati

Bacterial Pneumonia?! No problem!!!

2011-11-21T06:08:00.001-08:00

So it's been awhile now since I've updated this blog, but wanted to share with you Nathanael's first illness where we WENT to the hospital, but he was not ADMITTED as an inpatient. :)

About halfway through our week in Myrtle Beach, Nathanael woke up one night with a fever, and breathing fast. Since there were 6 little kids all together (and at least one of the had a runny nose) I figured he had picked something up from one of his cousins. We gave him some infant Tylenol, and within an hour or so he had perked up so much that he was out playing in the tide pools! Later he started to run a fever again, so we just kept him hydrated, watched his symptoms, and started to alternate Tylenol with Advil to keep his fever down. On our pediatrician's advice we also gave him elderberry syrup and vitamin C to support his immune system. My aunt and her friend are both RNs (with 30+ years experience each), and listened to his breathing, and were not concerned enough to suggest going to the hospital, though we found out where the closest one was, just in case. I kept thinking that he'd just fight off whatever it was, and would go back to normal soon.

Two days later Jamison spiked a fever, was very tired, and didn't feel good, so I figured he had caught the same thing. However, within two days or so he was back to normal. Nathanael, on the other had, was still dealing with a fever if we kept him off medication for very long. We got home on Saturday, and Sunday night I called the hematology/oncology doctor on call at Children's Dallas, who advised us to see the pediatrician if the fevers had not stopped in another day or two. By Tuesday morning (7 days after the fevers started) he was still not fever-free, but was still eating, sleeping, and playing normally, as he had been all week. I called the pediatrician's office, and got him a "sick visit" for the next day. However, when I called his immunologist just to advise them of his status, the nurse listened to his breathing (counted breaths over the phone) and decided he should be seen immediately. Reluctantly, I loaded the boys into the car and headed for the nearest urgent care facility. The doctor there did a strep test (that came back negative), but decided to hold off on blood work, since none of his symptoms seemed serious.

The next day we saw the nurse-practitioner at the pediatrician's office who ran some basic blood tests, listened to him (yes, his lungs still sounded clear!) and sent us home with instructions to call if anything changed. That night, after putting the boys to bed I was doing some grocery shopping when I got a call from the pediatricians' office to inform me that I should take Nathanael to the emergency room immediately. It turns out that his white blood count (WBC on a lab report) was around 30,000 (normal is something like 5,000 to 15,000 or so), which indicated the presence of a bacterial infection. I was, of course, reluctant to wake a sleeping baby to take him to the hospital. After all, why not wait until he wakes on his own and take him in the next morning? However, the nurse-practitioner was quite persuasive. (She didn't actually say she would call CPS if we didn't go in, but that's the impression I got from her tone.) My thought was that if he had been fine all week, what difference would 8-10 more hours make, so I finished getting my groceries, went home, and started packing a bag of clothes for us. (Up to this point Nathanael had not gone to the ER without being admitted inpatient in well over a year, so I figured the two of us would be staying for at least 2 days.) Brad decided that if we could get a friend to stay at our house for a few hours he would go with us, which was a welcome relief, since I have done so much of our hospital time on my own.

Around 10pm the three of us got in the car and drove over to the Legacy branch of Children's Medical Center. We met the doctor, who told us that the tests they would do included basic labs (CBC, chem panel, LFTs, renal panel) as well as blood and urine cultures and a chest x-ray. We already had the negative strep test, but if we didn't find anything the next step was a lumbar puncture (spinal tap). We've done that one before, and I REALLY didn't want to have it done again. But if it came to that we would have to do it to rule out meningitis.

Praise God that with a repeat CBC (which confirmed that the high white count earlier had not been a fluke) and a chest x-ray our doctor was able to diagnose Nathanael with bacterial pneumonia. Of course, he still had to have a catheter inserted to collect urine (be thankful if you've never had that done!), so that wasn't pleasant, but it's MUCH less stressful than a lumbar puncture! So once they figured it out they prescribed a broad-spectrum long-acting antibiotic (rocefin), gave him some IV fluids, and told us we could go home! By this time it was around 3am, and neither of us had gotten much sleep (I think Nathanael slept for maybe an hour after 10pm), so we were exhausted. I was so sure that they were going to admit us, that I had sent Brad home to relieve our friend around midnight, so Nathanael and I were stranded with no car, and were about to be discharged! I sent text messages and called Brad to wake him, and this time, since our friend had gone home, he had to wake Jamison as well. By 4am or so we were all in the car driving home. What a night! We were able to stay home that day, but got a call that our immunologist that she wanted to see him first thing in the morning (so much for our trip to the zoo with friends!) for a check-up and another dose of rocefin prior to starting his 10-day course of oral antibiotics.

The next week we saw the pediatrician for another check-up. He gave us some Florastor to help prevent stomach/GI irritation (so thankful there were NO problems at all!) from the antibiotics, and offered more ideas for immune support. Nathanael had now not had a fever since that first dose of rocefin, and he just continued to improve all week. We are SO THANKFUL that he did so well! God really protected him, considering that he could have been MUCH more and sick and miserable. His recovery really seemed effortless...what a blessing!

So thank you for your prayers for our little guy's immune system! God has graciously blessed us in so many ways in the midst of this, including the fact that it has now been almost A YEAR since the last time Nathanael and I were admitted to the hospital! :) For a long time I wondered when I would ever be able to say that, and I am so grateful that I can now!

Vacation - again?

2011-10-15T20:50:00.000-07:00

Myrtle Beach - September 2011

Thanks to the generosity of some family members, the boys and I were able to take another vacation this year. We spent a wonderful week at a beach house in North Myrtle Beach with my mom, my aunt, two cousins (and their kids), and a few other friends.

The boys and I spent LOTS of time on the porch, on the beach, playing in the sand, and a few hours here and there sleeping. ;) A few mornings we were on the beach before 7am playing in the tide pools (which were wonderful!) and watching hermit crabs while looking for shells to throw into the waves.

As much as I loved being with family and near the water (yes, the house was ON the beach, which was great!), I think my favorite thing was watching my boys learn to play with their cousins and interact with others. After so many months of isolation it was hard not to worry that we had scarred them for life with regards to their relationships with others, but seeing them learn to take turns, share, deal with frustration from not getting the toy they wanted, etc., was so good. (Don't get me wrong, I'm not saying they LEARNED all that in one week! They had plenty of opportunities to PRACTICE!)

I also loved watching Jamison grow in confidence throughout the week. He is normally somewhat reserved, and was quite cautious at first. (I did appreciate that, given that this was only his third visit to a beach, and he was going to have to learn how things worked.) As the week went on he even tried something new: laying on a boogie board while my cousin pulled him along. Despite his initial hesitation, and only being willing to run alongside while another cousin was pulled on it, he eventually decided he loved it!

Two things that were so cute were the "labels" given the boys by one of their cousins. She dubbed Nathanael "the little fast guy" (probably in comparison to her own brother, who is only 14 months, and walks well, but doesn't move as fast as Nathanael at 25 months). She also said that Jamison, "that OTHER four-year-old, knows a lot of words." after she heard him making up an alphabet song. Both labels kept me laughing at how perceptive she is!

We did have a little trouble when Nathanael woke up Wednesday night (or was that Thursday morning?!) with a fever. Once we gave him some ibuprofin his temperature dropped back to normal, and we were playing on the beach in just a few hours. However, the problem continued even after we got home, so we continued to treat regularly, but once it had been almost a week we saw a few doctors, had blood work drawn, and had a chest x-ray (yes, we spent 6 hours in the emergency room in the middle of the night), and he was finally diagnosed with bacterial pneumonia! After 2 treatments of IV antibiotics he was put on a course of oral medication, and he recovered just fine, without any problems. We are so grateful.

We are grateful for God's provision through our family to have made this week possible. Of course we all missed Brad, but had a fantastic time with family at the beach. :) Though some parts of our week were a lot of work (yes, there were 6 kids ages 4 and under!), we shared and helped each other, and really enjoyed the time together. We will have many fond memories of this summer for years to come.

Nathanael's stats - good reports all around!

2011-09-02T08:06:00.000-07:00

So Nathanael had his FIRST EVER well-child check-up last week! It was pretty exciting to take him in to see a pediatrician who was not an immunologist, hematologist/oncologist, endocrinologist, or surgeon...someone who sees and treats generally healthy kids! The visit went really well, and I wanted to share some stats:

Height/Length: 31.5 in (2nd percentile)

Weight: 23 lbs, 1 oz (4th percentile)

Head Circumference: 19.75 in (85th percentile)

He's growing really well...in fact, he is now following a more typical growth curve than he's been on in over a year. From about 4 months of age to about 18 months, he hardly grew at all (wore mostly 6 month clothes and size 3 diapers for a majority of that time), and since February (after he was off steroids) he has grown considerably, and is now wearing mostly 18-24 month size clothing and size 4 diapers (though the size 3 would probably still fit!). He's still on the small end of the chart but it's nice to see him even ON the chart! It's also funny to note that at 2 years old Jamison was around the same height, and his head was about the same size. Nathanael weighs a little less than his brother did (Jamison was about 25.5 lbs) but given his past treatment and current growth, it's really not an issue. We have rather short boys who will have plenty of room for their growing brains! ;) We're just thankful that they're growing and doing well!

I recently checked on our progress on the COTA fundraising page (the fund that we're using to help finish paying Nathanael's transplant-related medical bills, and that will help pay for future transplant-related bills, such as post-transplant check-ups and travel expenses) and noticed that we're almost to the halfway mark, which is our goal for the first year. With a little bit more help we could raise $2000 in honor of Nathanael's 2nd birthday, and the 2nd anniversary of his transplant, which will be in November. If we could raise that much during this timeframe we could meet our goal and earn a bonus from COTA. If you are able to make a small gift during the next two months or so, OR if you know of someone else who might be interested, we invite you to help us meet that goal.

We also saw Nathanael's immunologist last week (it was a busy week, as I saw my oncologist as well!) and had blood drawn for monthly tests. His IgG level FINALLY started coming up on its own! For the past several months the level has dropped (since we stopped giving the medication that boosted it), but this month the number finally came up, so this is very good news!

I included this short clip to show some of Nathanael's vocalizing...he LOVES to make noise, and is starting to say things like "car", "truck", and "dog"...though they normally come out missing the first consonant. We're not concerned though, as he continues to make progress in this area, as well as in all other areas of development. We're grateful for that. Oh, and this also shows him climbing up and drawing...two other things he LOVES to do!

Happy Birthday Nathanael!

2011-08-19T21:38:00.000-07:00

Our sweet and crazy little boy has been such a blessing to us - and to everyone he meets! - these past two years. He is consistently happy and smiley (unless he doesn't get his way, of course), loves to imitate his big brother, and makes us laugh with his silly antics. He is also much more thrill-seeking than the rest of us, which has caused me to add gray hairs more quickly this year than in years past. He loves to climb and fall down, throw himself backwards, and when he's really excited he runs around with his tongue hanging out!

While we are thrilled that he's doing so well, it's a little ironic that each year on August 19 Nathanael has been sick in some way. We hope this isn't a trend that continues!

2009 - A minor bleed on his brain was discovered shortly after his birth, and he was transferred to a children's hospital an hour away to be given washed, irradiated platelets. The bleeding resolved within a few days.

2010 - We were finally all home in Texas again, when he was hospitalized for a urinary tract infection for several days. We were sad, because Pop Pop David & Valerie were in town to visit, and they ended up meeting him through a hospital door while he was hooked up to IVs. The staff at the hospital did bring him gifts and decorated our room with a big sign though!

2011 - After fighting off an upper respiratory infection in July, he developed a cold a few days ago, and has been coughing a little. However, he has otherwise been completely himself, throwing food, splashing in our hotel pool, and trying to climb out of his car seat. I'm pretty sure I even found proof tonight - don't ask me how! - that he's been eating a green crayon. (I'm sure I'll find the rest of the offending piece of wax when I clean the car out this weekend!)

On the bright side, each year around his birthday Nathanael has been able to see one or more of his grandparents!

2009 - Joyce was here when he was born, helping us with Jamison while I was in the hospital with Nathanael, and then stayed for a few more days once we were home.

2010 - We saw my parents for Jeff & Julie's wedding in Columbus, OH the week before his birthday. (It was hard for me to keep the boys away from almost everyone else in our extended family, but with his low immune system and the risk of illness, we decided it would be best.) Then David & Valerie came to visit on his birthday, and while they could only see Nathanael briefly at the hospital, Jamison had a blast with them!

2011 - We visited Great Grandmom Jane in Spokane, and were able to celebrate (early) with her, as well as with David & Valerie, who came up for a visit, and with Uncle Doug & Aunt Chris, as well as cousins Carrie and David and a few others from Aunt Chris's family. We loved seeing Nathanael (and Jamison!) interact with everyone. We spent his birthday driving from Colorado Springs, CO to Amarillo, TX on our way home, but we did get to swim in the hotel pool that night, which he LOVED!

I should mention that we're really grateful that he has not been hospitalized at all since last December, so the fact that he has been able to stay home and fight off several minor illnesses is AMAZING progress from where we were even a year ago. It is still our prayer that God would use our family, and this whole situation, for His glory...we are just thankful that for now His plan includes having two healthy little boys at home.

Vacation Continues

2011-08-18T18:24:00.001-07:00

Here are a few pictures from the second week of family vacation: lots of time with family and friends, lots of relaxing and playing, and lots of silliness! All-in-all we had lots of fun, and are thankful for the time we've had together.

The boys enjoyed "making sandwiches" with some borrowed toys (thanks Jerri!) that we too

k along on the trip.

They also enjoyed wearing the hats from Nathanael's impromptu birthday celebration.

Jamison was especially intrigued by the secret playroom under the stairs at Aunt Chris & Uncle Doug's house, but he let Nathanael play with him for a short time as well. ;)

Oh, and Nathanael had to "borrow" Grandmom's shoes to walk around. We laughed and laughed at his facial expressions, but I couldn't seem to capture the best ones.

Nathanael loved the "art room" at the Teague's house, and quickly decided that his favorite place was in front of the chalkboard easel!

We spent half a day at a park near their house (north of Seattle) and walked on the pier (saw a small dog shark!), played on the playground, and picnicked. It was great fun in a beautiful setting!

The boys all played really well together...and it was fun to see them get to know each other again, since it has been so long since t

hey've seen each other! They did all get a little rowdy, but for three little boys ages 2, 3, and 4 they didn't get hurt very often, and had lots of fun! Meanwhile we had time to visit with wonderful friends!

We did spend a few hours downtown Seattle, and saw the aquarium, where the boys all had fun checking out the octopus, seeing the sea lions, and running around.

We were sad to leave, but glad to have been able to visit, and were glad we could have a few more days with family in Spokane before heading back towards home.

Family Vacation!

2011-08-08T10:17:00.000-07:00

Being such spontaneous people (ha ha ha) Brad and I recently decided to putthe boys in the car and take a trip to visit his grandmother in Spokane, WA this summer! (This was a little spontaneous for us, as we only made the final decision to leave about 3 weeks before our actual departure. Apart from missing our church's VBS this week, the timing could not have been better...we're missing 108 degree weather back home right now!) After over 30 hours (5 days), 4 museums, and 7 states, we finally arrived, and have been enjoying time with family for several days now. Here are a few pictures from our adventure so far! (They are out of order...if anyone can teach me an easier way to move pictures around in Blogger I'd LOVE to hear about it!)

Nathanael wanted to help with the packing. :)

Brad was so excited to escape the heat in Texas that he could hardly contain himself.

The boys had fun in our hotel rooms each night - I think Jamison is "hiding" in this picture!

We visited the Denver Museum of Science & Nature and a kind staff member offered to take our picture on the balcony. It was a great place to visit!

We drove through the Bighorn National Forest on our way from Thermopolis, WY to Billings, MT, and saw some gorgeous scenery.

We snapped this shot of the boys overlooking Hell's Half Acre in Wyoming just before hearing an eerie rattling sound that prompted us to scoop up the boys and head back to the car...stat! Other people told us they had seen a snake, but we sure didn't want to see the one we heard!

The boys and I are checking out a triceratops at M.O.R.
Brad and the boys posed with "Big Mike," a replica of a T Rex outside Museum of the Rockies in Bozeman, MT, another great place to visit!

Posing in front of Shell Falls in the Bighorn National Forest - another stop at a scenic

area that was well

worth our time!

Playing at a rest stop in Montana just to stretch our legs for a few minutes. The boys loved this!

Beautiful mountains somewhere in Montana. :)

Four generations of the Banks family - see the resemblance?
Visit to a fire station in Spokane where cousin David works - the boys had a ball!

Valerie and I enjoying a fun evening together with the rest of the extended family: Uncle Doug and Aunt Chris had some other relatives over, grilled dinner for us, and we all sang "Happy Birthday" to Nathanael to celebrate his special day. (August 19th he'll be TWO years old!)

Grandmom Jane and four of her six boys (Nathanael was in bed, and Jason is in Atlanta for the PGA tour).

We're off to Seattle tomorrow to visit friends, and will return to Spokane before starting our long drive home. More highlights of the trip to come! :)

Normal Nathanael?!

2011-07-21T13:42:00.000-07:00

So I know it's been quite some time since I've posted anything. So much has happened, and I'll have to write about all of it later...but I wanted to share some news on my little guy: last month he passed his ACTH stimulation test, which means that his adrenal gland is awake and working normally! After so many months of suppression (due to the steroids he needed to take to prevent other post-transplant problems) we knew it would take some time for his adrenal gland to begin to function on its own, and we are so thankful it's now working! What this means for me is that I no longer need to think about ever using that large intramuscular needle on his thigh to inject steroids at home because his body will make what he needs. Yay! After 7 months of sticking small needles into his thighs every week and 11 months of torturing him through weekly dressing changes on his central lines I am VERY thankful that this is one medical procedure I did NOT need to put into practice.

We also just learned today that for the second month in a row his IgG level is normal. NORMAL! Now of course, it doesn't SOUND normal to me, since for so many months we were adding IgG to his system, and our goal was to keep it over 600 (it was over 400 in June and is currently just over 350), but the nurse told us that it's normal to experience a drop in the level before it starts to rise. This is really exciting!

We have also witnessed Nathanael's first upper respiratory infection, and he seems to have handled it pretty well. We didn't give any medications (though his new pediatrician recommended some more natural remedies, and we added lithy tree oil to his water for a few weeks), and he continued to eat, drink and play pretty normally. (His sleep was interrupted by coughing almost every night for about two weeks, but now it's back to normal, in that he only wakes up after he's soaked his pajamas and bed.) We're pretty sure Brad had it first, then Jamison, then I came down with it about a month ago, and two weeks later Nathanael had it. However, three of us were diagnosed with and treated for bronchitis. Not Nathanael! Of course I am thankful that at present he is still not fully weaned, and since I had this infection before he did, he has been getting antibodies through milk.

Like a normal little brother, Nathanael wants to do everything Jamison does. (Sometimes it drives Jamison crazy, but I try to tell him this is part of being the older sibling...I'm not sure that explanation ever worked for anyone, but it's true!) He likes to play with the same toys, "read" the same books, sit in the same chair at the same time...you name it! One of Jamison's favorite things to do lately is to hide. He loves to call out, "Mommy...come find me!" and then wait for me to look in several places before finally finding him. Sometimes he likes to hide under couch cushions, and I have to "give up" and say something like, "Oh well...I just don't know where to find that Jamison. I'll just rest for a few minutes on these nice, fluffy pillows." And when I fall down on the pile of pillows someone erupts into giggles and squeals with delight. Well, just recently Nathanael decided to hide on the couch. It was pretty cute. See if you can spot his little feet in the first picture before looking at the second one of his big grin. (Oh, and yes, that laundry is clean and waiting to be folded. At least it's clean!)

So there's a lot more going on at our house, but some things are still "normal". Besides missing church for 3 weeks (while the boys and I were sick) we are enjoying time with friends, going to the park about every other week taking Jamison to Soccer Shots every Wednesday morning, and going swimming when we can. (Did I mention that the boys LOVE the water?) We are planning for a few trips in the coming months: one to see Brad's grandmother, uncle and aunt in August, a trip to Myrtle Beach in September for the boys and I (with my mom, my aunt, and two cousins and their kids), and a trip to Cincinnati in October for a check-up, followed by a visit to Wisconsin to see my parents and extended family. It's daunting to think about so many hours in the car (okay, one trip will be by plane) with two little guys, but we are so excited to take them places. Our trip to Spokane next month will include three national parks and two or three great dinosaur museums!

The not-so-much-fun part of life in our house right now is that I have a fast-growing desmoid tumor that requires immediate treatment. I will have another MRI next Thursday (8/28) in Dallas, and will then take my first dose of daily oral Raloxifene (Evista) to try to stop its growth, and hopefully shrink it (and the three others that are currently dormant) into non-existance. So that's my big news. I'm not sure I'm ready to write about all of it yet, as I'm still pretty raw emotionally. (I cried for almost a week when we got the news.) I recently met a woman whose email address starts with "cancerblessings"...I told her I wasn't really there yet, and thankfully, she understood. Please pray for me. This medication will (at least temporarily) put me into menopause, and August in Texas is no time to start to have hot flashes. If this doesn't work in 6-8 months I will probably try Gleevec, and then would move onto Methotrexate and Velban (IV chemo given once a week through a mediport - which I would need to have surgically placed). I hate that this has to be part of my life for many reasons. I am grateful that we didn't find the new tumor during Nathanael's treatment. That would have pushed me over the edge. So please do pray, and please keep in touch with us. If you're around here, please invite yourself over, or invite us out. If I get depressed like the last time I was on chemo (2000) it will be hard for me to reach out at all. So I do need help getting out of the house and getting the boys out for fun with friends...and I need to take my mind off this mess!

Lots of love to all of you who pray for and support us!

Jamison

2011-06-05T15:11:00.000-07:00

So I recently wrote a post about many of the things that made transplant so difficult for me, but the big one I didn't even mention (I only have so much time and energy late at night!) was missing Jamison while Nathanael and I were in Ohio. I was away from him for 3.5 months, right around the time he turned three. It was almost like sending my "baby" to college for a semester. I am thankful he was old enough to talk to me on Skype and on the phone. (And I'm grateful for the technology that allowed us to do that!) It was just a really hard time. Most nights I cried once we hung up from our video calls.

Of course I am also grateful for all the help we had caring for him, as Brad's mom moved into our house for much of that time, and other friends helped so that Brad could continue to work. I appreciated the special effort that went into phone calls or reports of what Jamison was doing, new things he liked that I could talk to him about, which books he preferred. I especially appreciated the toilet-training that took place in my absence! But it was still strange when we were reunited, as I felt like I was getting to know him all over again. Discipline was difficult, I didn't know what he liked to eat, or the new words he had learned...and I had all but forgotten how to relate to a preschooler, as I had become accustomed to only dealing with an infant (and a sick one, at that). It was almost like Brad and I were each single parents to only children during that time.

Now that I've been home for over a year, things are just about as "normal" as they can be. Jamison is more of a snuggle-bug than ever. (He kissed my face this morning while I was talking to my mom on the phone and tried to make me laugh by hugging and tickling me. So cute!) He has become a little more jealous of our time and attention, especially as Nathanael gets older and requires a different kind of attention from us. He will sometimes ask me to put Nathanael down for a nap at 9:00am. Hmmmm. It's not really that Nathanael is tired, just that his presence is inconvenient to his older brother. Sounds like normal big brother behavior to me!

What's sweet is that Jamison is starting to learn the benefits of showing love to his little brother: we appreciate and praise him for it, and he gets a little brother who will play with him, and will often do what he wants! Today they took their first
bath together. It was pretty cute, and I'll post pictures later. Jamison also helped Nathanael climb into his bed to play there today. They had lots of fun with stuffed toys and pillows. It was especially cute when they were patting the wall, and Jamison instructed Nathanael to say "wall." " 'All," said the little guy dutifully. *I* don't get that kind of response from him, but when his *big brother* asks, he'll talk?! Oh well. These lessons are just the first of many that he will pick up from his brother.

I'm also enjoying the growth in confidence I'm seeing in my big boy. He is adjusting really well to being around other kids, and is not afraid to try new things. At the park the other day he climbed up (and down again) those round ladders, some climbing walls, and then tried the monkey bars, before falling on his back. But he didn't give up. He ran off to play, and spent an hour or so in the splash pad!

He still talks a mile a minute, tells stories (and wants us to tell stories) about dinosaurs, bugs, angry birds (yes, he plays the game...), Kipper the Dog, and Veggie Tales. He loves "big kids' Sunday School" and going to the park. He has become much more physically coordinated, but also takes more risks, he doesn't know his own strength, and sometimes runs down his brother. Being gentle does not come naturally. He thinks he's the boss and wants to be in charge of everything. Yes, he's a typical four-year-old. I yearn for peace and quiet, gentleness between my boys, no pillow- or tickle-fights, and no conflict. I am a typical mom. Now we're just learning to find healthy middle ground.

What was most difficult about transplant for me?

2011-05-22T03:06:00.001-07:00

So the boys and I got together with a new friend the other day (yay!) and we were talking about the whole transplant experience, the challenges of having your baby in the NICU, and I got to thinking: what was most difficult for me about transplant? I'm not trying to complain here, but I find it therapeutic to get my thoughts out and share them, so here goes:

What has been most difficult for me in the past 21 months is the loneliness/isolation, and great responsibility. What do I mean? Despite lots (and lots and lots) of people praying for me, it feels like only a very few have truly understood what our life has been like. I was used to having a group of friends who could relate to where I was in life, whether that was being home with a small child, having a job that could at times drive me crazy, making a long commute every day, or dealing with relational challenges in my immediate and extended family. Since so few friends have been through transplant (and the BMT world is unlike anything I've known, EVEN with my rather extensive personal experience) it does feel lonely. I also noticed that it was easier for me to have another adult around all the time (like when Mom was living with me in Cincinnati) than to be at home on my own with two little ones all day. The difference that the conversation and company of another adult makes is incredible! I know we tried to limit visitors in the past, and our caution probably made lots of our friends nervous about coming near the boys. Now we just need to move forward out of our isolation, and it really is harder than I though it would be. I see germs everywhere I go. I do look forward to church every week though, and that helps a lot as I get used to germ exposure again.

The "great responsibility" to which I referred was for the bulk of Nathanael's medical care. From birth to three months he required no extra care, and was an "easy" baby who ate well, slept well, and tolerated just being around us while I played with Jamison and prepared for our temporary relocation. However, once treatment started he required LOTS of very specialized care. During our 5.5 week hospital stay the nurses took care of all of this for me, but once we went home I was giving IV meds twice a day, flushing his central line and hep-locking it, giving a dozen or so oral meds (through the NG tube at first, then later by mouth), and running milk through the feeding pump for 8-12 hours every night (oh, and pumping the milk for that purpose, in addition to trying to get him to feed by mouth so we could do less tube-feeding). We also spent two days a week in the outpatient unit, "day hospital" for other infusions, bloodwork, dressing and cap changes for his central lines, and doctor/nurse visits. It was pretty intense for several months. I'm really thankful that my mom was able to stay with us for the first 8 weeks (and my dad came down on weekends to be the designated "baby holder") and then I had another friend come in for a week, and finally Brad and Jamison came back.

Once we moved home quite a few things changed, and we had to readjust to a new system. All of a sudden I had to do much of the same medical care (minus the tube-feeding - yay!) while managing two little boys on my own AND trying to maintain my sanity. We had new nurses, new medical supplies to work with, and a new medical team at a different hospital whose protocols were different. And I don't normally do well with change. Since I felt I had been well-trained I insisted on doing more things myself, and asked others to assist me. It was good, but also stressful. Every week for 8 months or so I personally removed the dressings from his central lines, scrubbed his chest with chlorahexidine and alcohol, placed the BioPatches on his lines, and secured the catheters under new dressings. (I should say I could not have done this without the help of our home health nurses, who were very patient with me, helped me problem-solve through many situations and while using new supplies, and helped me learn a lot.) That ordeal used to take about 30 minutes, during which time everyone in the room had to wear a mask, and Nathanael normally screamed and wailed. Afterward I'd feel exhausted. I used to say that if I drank, THAT would be the perfect time for a beer. (Incidentally, I just don't like the taste of beer...except in other foods.) Compared to that, giving IV meds and flushing his lines was EASY.

The other thing that was stressful, depending on how Nathanael was feeling at a given time, was his oral medications. It used to take about an hour each morning and evening to get all twelve of them into him. When he got sick last fall I think he began to associate his stomach irritation with the meds, and began to fight them. At one point it was taking me THREE hours, both morning and night, to get his medications in. I really, seriously considered putting down a new NG tube just for medications, but the doctors talked me down several times, citing possible harm to him for little discernible benefit. (I did argue that a sane mother was not just a small benefit to my kids.) A few times I did go ahead and put one in, but he'd normally pull it out before I'd get to use it again. Once he felt better it began to take less time, and eventually, as he got older, I could distract him with videos (we love Veggie Tales!) and he would swallow whatever nasty-tasting meds I'd squirt into his mouth. We still use videos (we're now into Kipper the Dog) for taking vitamins and brushing teeth, but now we don't take any more medicines!!! :)

Okay, so this post has been a little depressing, so I have to include some pictures of my boys. I've been told many times this week how adorable they are...and I agree! :)

Me...a skeptic? Okay...I admit it.

2011-05-10T15:51:00.000-07:00

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!

"Getting there is half the fun..."

2011-05-09T06:52:00.000-07:00

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. He 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 midnight 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.

Videos of Nathanael

2011-04-09T10:25:00.000-07:00

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!

Update on my desmoid

2011-03-12T19:31:00.000-08:00

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.

Haircuts for the boys - Nathanael's first!

2011-03-12T07:36:00.000-08:00

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, when 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!

Pictures of the boys

2011-02-15T07:56:00.000-08:00

Happy 4th Birthday Jamison!

2011-02-05T15:03:00.000-08:00

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 have 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!

Moving Forward

2011-01-29T21:16:00.000-08:00

So I haven't posted much about Nathanael's health lately, as there hasn't been much to report. We did get some encouraging lab results from some recent tests, and had more tests done on Wednesday (the results of which we won't have for a few more weeks). I did want to share a little bit of what we know now:

Nathanael's immune system is starting to recover (he now has some B-cells, but still very few T-cells - a year ago he had record-setting T-cells, and his B-cell recovery was lagging, but all that was impacted by his bout with autoimmune hemolytic anemia, followed by 8 more months on steroids...). His doctors won't estimate what percentage of an immune system he has, but they did give us clearance to let him crawl on the carpet, and start to share toys and have more contact with Jamison. Yay!

His LAST dose of oral hydrocortisone (a steroid) will be given in the morning!!! I've been waiting for this day for months! However, the endocrinologists wanted me to be trained in giving IM (intramuscular) injections, and will have us keep some steroids on hand, in case he gets sick, and I need to give him something at home (under the doctor's orders) to compensate for the normal "stress dose" of cortisol healthy people make. (Nathanael has iatrogenic, or medically induced, adrenal insufficiency, and now we'll be watching and waiting to see how quickly his adrenal gland "wakes up" from its long hibernation.)

He is now not only crawling and standing, but cruising...much to our excitement (and sometimes, to our dismay!). He is loves to grab things, look at books, play with toys that make noise (thanks for the shaker, Sandy!), and will try to use utensils at meals. He also seems to respond appropriately to various emotions, including disapproval (that lower lip sticking out, and those big, sad brown eyes can really melt your heart). So of course we are thankful that after all that he's been through, his physical, cognitive, and emotional development seem to be on track, as he continues to make progress.

He is finally growing again! At just under three months of age, when he entered the hospital for transplant, he weighed 15lbs 12oz. At sixteen months of age he weighed 17lbs 9oz, and now at seventeen months of age he weighed 18lbs, 9oz, and has grown about an inch in the past month. It's funny to think that he was wearing 3-6 month clothes over a year ago, and that we've JUST NOW started to put away the 6 month size pajamas.

We are planning our next trip to Cincinnati for early March, and could use prayers for all the details that will need to be in place. We are so thankful for our social workers who are helping us with travel arrangements, and for our friends who will host us during our stay. (Oh, and the plan is for the boys and I to travel together so we don't need to find child-care for Jamison while Brad works.)

From June through January we spent over $1300 on prescription drug co-pays alone. That doesn't include doctor-visit co-pays, parking fees, payments made on the payment plans we currently have at five hospitals in two states. We have just started a fund-raising campaign to help our family meet all of our obligations and stay on top of our ever-increasing medical bills. To learn more or donate, please visit:

http://cota.donorpages.com/PatientOnlineDonation/COTAforNathanaelB/

We could also use volunteers to join our COTA campaign, so if you're interested, please let me know. You can learn more about the Children's Organ Transplant Association below:

http://cota.org/volunteer/volunteer.php

Nathanael is now only taking 5 oral medications daily (and 1 subcutaneous infusion - weekly) instead of 10 or more! We were so thankful to be able to stop some of his medications recently. For those who know how much I've struggled to give his medications, this makes a huge difference in our daily quality of life. Instead of an hour in the morning and at night, we now spend about 10 minutes twice a day giving medicine - sometimes it does include "bribing" Nathanael with TV - today we watched a few minutes of "Super Why" so he would just swallow without getting upset.

I think that's all the news from here...thanks for your continued prayer for us! We also love phone calls, emails, and facebook messages!

Bree

Celebrations!

2011-01-22T07:02:00.000-08:00

This year we started our holiday celebrations with lighting the menorah (though next year we'll aim for nightly readings as well - we only really talked about the holiday a few times). However, Jamison still really enjoyed the candles each night, and especially loved blowing them out! We were also able to spread out our celebration of Christmas over about a month, and we had family in to visit on both ends of that month. In early December my parents drove down and stayed for about a week, helping us with things around the house, playing with the boys, and enjoying the mild weather (compared to the cold in WI).

On Christmas day we saw Brad's parents via Skype, and had the boys open presents so their grandparents could see them. We're so thankful to be able to keep in touch that way! Then Mark and April came over to share a meal and spend the afternoon with us. It was so nice to spend a low-key day with friends - it almost seemed like things were "normal"! They read this really great version of the Christmas story ("What God Wants for Christmas") to Jamison - while Nathanael took a long nap - and he opened little boxes with the various characters along the way (including a mirror in the last box to show us all what Jesus wants for Christmas).

In January Brad's (paternal) grandmother came out for a visit, which was so nice for us...since it has been about two years since our last visit with her. It was great to see her, and especially to see how she loved playing with the boys. Of course Jamison loved having her here, and kept her entertained with stories and questions about bugs, dinosaurs, and all his favorite topics!

After she left we decided it was time to put away Christmas decorations. Jamison and I are a little sad that the stockings are no longer up, and that the tree decorations are put away, but we have them all ready for next year (even labeled by which ones are most and least fragile - i.e. the ones Jamison can unpack by himself!).

Of course we are most grateful that we've been able to spend this holiday season together, and we look forward to many more holidays together, and with family and friends!

Thankful for so much in 2010

2011-01-06T16:49:00.000-08:00

Looking back 2010 was an incredibly challenging year, but we also have so much for which to be thankful. Here's a short list (well, you know me...no list is short!)in no particular order:

*Two precious, adorable boys - hope you enjoy this video of them!

*Our parents, who lived with us - in 2 states - to help care for us and our boys

*Friends in Cincinnati who provided meals, lent furniture and household items for our apartment, welcomed us into their homes in May and August

*Friends at home who cared for Brad and Jamison during my 7 months away in 2009-10

*Friends and family in both places who worked on our homes, handled repairs, installed things like flooring and fans, and helped finance such projects

*A dear friend who spent a week with Nathanael and I in Cincinnati, cooking for us and taking care of me

*Staff at Cincinnati Children's Hospital

*Staff at Children's Medical Center Dallas

*Manager of IKEA in Cincinnati who donated a gift card to help us set up a second household

*Manager of Kroger and Biggs (grocery stores) who donated gift cards to help fill our refrigerator and freezer prior to our arrival

*Friends who gave us grocery cards and meal cards for the hospital

*Friends and relatives who sent mail, pictures, and email during our lonely days

*Everyone who prayed for us - and for those who continue to pray

*Good health - I have not been sick in almost 2 years (!) and have been able to devote myself to caring for Nathanael, and now to Jamison as well

*Of course, God provided us with all of this help and support, and He also sustained us through months of living apart, many months of isolation, and has given us LOTS of opportunities to grow and trust Him.

I'm sure we have much more to be thankful for, but at the moment I need to go fix dinner! Please count your blessings, and praise God with us for His goodness, and may all things be for His glory!

Merry Christmas 2010

2010-12-21T10:25:00.000-08:00

Merry Christmas from the Banks family!

We pray that you rejoice with us as we celebrate God's goodness in so many ways. Our hope in Christ has given us strength to get through a challenging year following Nathanael's cord blood transplant last fall. We feel blessed to have two precious boys in our lives, one healthy and the other moving towards health, as we finally share our first Christmas together as a family! May you and your family know His love in this season and in the coming year.

Brad, Bree, Jamison & Nathanael

Photo captions:

Jamison, at 3.5 years old, loves his role as big brother

Nathanael at 14 months, after the removal of his central lines

Caption from the family picture:

Transplant = $750,000

Homes in 2 states = $25,000

Being together = PRICELESS

Birth Announcement (a year late!)

2010-12-19T15:09:00.000-08:00

So now that our precious little boy is 16 months old I'm finally sending out birth announcements! I'm also posting it here and on FB. Hope you enjoy the beautiful pictures by Kay McIntire of KM Digital Images. More of her work can be seen here:

http://kmdigitalimages.com/

I also realized that Friday, December 17 was exactly one year after Nathanael was discharged from the hospital (after more than 5 weeks inpatient for transplant) - what a great day!

Just in case the text is hard to read, it says:
Share in our joy as we welcome
Nathanael Zachary
August 19, 2009
8 lbs, 7 oz, 20 inches
Brad, Bree & Jamison Banks
"When Jesus saw Nathanael approaching, He said of him, "Behold, a true Israelite in whom there is no deceit." - John 1:47

Our friend Jackson

2010-12-14T16:10:00.000-08:00

We are so thankful for some friends who were introduced to us shortly after Nathanael's birth. Their son, Jackson, has a rare immune deficiency disease as well, and had a bone marrow transplant in March. Since we have kept the boys so isolated, our doctors (we see the same ones here in Dallas) agreed that having them play together would be fine, so in early November we set up a time for them to come over to play. (Of course, Nathanael was only a spectator...)

I was still pretty nervous that something would go wrong, that we'd share germs with Jackson and he'd get sick...so I steam cleaned the furniture and the floors, sanitized some toys, and prayed. Of course, as soon as the boys got comfortable playing with cars in the living room, off they ran to Jamison's (uncleaned) room full of (uncleaned) stuffed toys, and they both came back with lots of "furry friends" in their arms...I was horrified, and they had so much fun! The animals played games together, and eventually they were abandoned in favor of a pillow fight on our bed! We also played outside together. The boys were thrilled to play together, and Melissa and I were so thankful that despite their extended isolation, both boys had retained/learned enough to handle themselves appropriately. God's grace was clearly evident.

While I was worried about Jackson before he came over, I noticed that he washed his hands often, didn't put things in his mouth, and was great about only playing with Jamison. At 3 years old he's very verbal, and has an INCREDIBLE understanding of his condition, the "rules" (he wears a mask and hat when outdoors), so I understood why Melissa was comfortable with his being here...even playing with Jamison's toys. He is also farther along in his recovery than Nathanael, so that set my mind at ease as well. One of the challenges of Nathanael's age is that he doesn't "get it" and can't understand why things happen. Jackson showed us his central line and g-tube button, and told us that he got medicines through them...what a great attitude!

Of course, it was such a blessing to me to be able to talk with Melissa. She has an in-depth understanding of our situation and is incredibly compassionate. I love all of my friends, and am grateful for all of you who pray for us, but (thankfully) so few of our friends know what this road has been like, that it's a great comfort to share it with someone who also shares your faith, can laugh and cry with you, and can understand the unique challenges we've faced this year. We do hope to have both families together again soon.

It was such a great day all-around. Of course Nathanael was an observer of all the fun, both from his exersaucer and his booster seat, but that didn't bother him, and the benefit to the rest of us was well worthwhile.

Please pray for Jackson and his family, as he continues to recover from his transplant. We praise God with them for his continued good health, and look forward to lots more fun together!

Out of the frying pan...

2010-12-12T23:46:00.000-08:00

I wrote the title of this post almost a year ago, and I had no idea how true it would prove to be. At the time I had just been told by the nurse in charge of discharging transplant patients that we would be sent home before Christmas. (I've said it before, but it bears repeating that in the BMT world, NOTHING is certain until it actually happens...) Nevertheless, around that time we were planning to go "home" to the apartment in Cincinnati after almost 6 weeks in the hospital. It was scary for me, as I knew that I would become Nathanael's primary caregiver and would have to give IV meds, milk and meds via the NG tube, and would have to carefully watch him for any signs of illness or infection. It felt like an impossible task, and I even created a spreadsheet for myself to use as a reminder of everything we had to do (and so we could write it down so we didn't forget that we had done it!). I was glad that my mom was going to be with me, but I still had no idea that I'd learn to do so many things, and would become so comfortable with them.

What I had no idea about at the time was that it in a year we might possibly feel like we had made almost no progress. Well...it's not really true that we've made no progress, but it often FEELS that way, since we still live in isolation, we still give oral meds 3x daily, and we still obsessively wipe and clean anything that Nathanael is going to touch. It breaks my heart to hear Jamison tell me that he's sanitizing his hands (3x in 10 min the other day) to keep Nathanael from getting sick, but that's such a big part of his world...and I'm not sure how it can be any different right now. Yes, the central lines are gone, and we've stopped some meds, but then we added some to our home routine that used to be done at the hospital. And it feels like we're always on the brink of another inpatient stay. Ugh!

Several months ago Brad asked me if he thought we'd all be in church together for Christmas. I think I laughed at him. That wasn't very nice of me, but it seemed so unrealistic, and I couldn't even dare to hope for that. Now I think I'd just like to get to church together NEXT Christmas. Yes, we were told 1-2 years for the rebuilding of a healthy immune system, but we're ready to be done with this ordeal NOW. Out of the frying pan into the fire, indeed.

Another Hospital Stay; Fun at Home

2010-11-30T16:47:00.000-08:00

After about 10 weeks at home, Nathanael and I went back into the hospital on Monday. He had been showing signs of something not being right by mid-week, so it was no surprise to us that when he was seen in clinic on Monday they decided to admit him. He did also have his first fever in quite awhile during his check-up. Unfortunately because he no longer has any central lines, he quickly became a pincushion (although he didn't bruise nearly as easily as last month during his regular blood draws). He had blood drawn in clinic, then an IV was put in an hour or so later, then he had another draw on Tuesday morning, and an injection in each thigh on Wednesday (at least he didn't have labs drawn that morning, as everything had looked good the day before). He also had two days of heavy IV antibiotics, which is standard practice for BMT kids who spike a fever, and in his case, since we were convinced he had a UTI it was the best way to start treating it early.

However, his UA (urinalysis) was clear (showed no signs of infection), and NONE of the cultures they collected (urine, blood, stool, nose, armpit) were positive for ANYTHING. This is good news of course, as he has none of the viruses they test for, but it doesn't help us really know what's going on with him. Ugh. They suspect a mild GI bug, but he only vomits when something gags him (oral meds, feeding), and in our experience with Jamison, that's not the way it usually works.

So after staying in the hospital for just over 48 hours (including 2 nights with not much sleep for either of us) we were sent home. I'm thankful for that. We also had a nice evening with some friends on Wednesday who brought yummy dinner and then fixed our ailing garbage disposal - yay! They had expected to just spend time with Brad and Jamison, but it was fun for all of us, and Nathanael smiled at everyone, though he still looked pale and blotchy all over. We are now just trying to keep the little guy hydrated, rested, and getting all his medications so he can deal with whatever this is without being readmitted to the hospital.

The very good news is that despite this recent hospital stay, our medical teams have reevaluated his medication list, and have decided to stop two medications now, and may stop one more in a few weeks - YIPEE!!! That leaves us with 7-8 meds in the morning, 1 in the afternoon, and 6-7 in the evening - a BIG improvement. The one in question will be decided upon after more blood tests are done next week. If his mitogens and antigens look like they are responding more normally then we may be able to stop his antifungal med (voriconazole). His immunologist here has also ordered his T and B cell studies to be done next week, since his last test was in early October, and his steroid dose has dropped significantly since then, AND because we don't expect to go to Cincinnati for a check-up until March (we had expected to go in January, but we won't do that unless his condition worsens or is cause for concern). I hope that we'll see a major improvement since his steroids have been cut back, but we'll just have to wait for the results.

In other exciting news our little guy has learned to pull himself up to standing! This is a huge development for him, and though delayed, he is continually making progress. He can also sit himself back down, which is a good skill to have. :) I think he loves the view from above the crib or pack n play rail.

Jamison helped me decorate for Christmas this year, and we've had a lot of fun getting out the tree, ornaments, stockings, and even putting lights and bows on the shrubs out front. He is quite the little helper in so many ways, and even our tree bears the mark of a height-challenged lead decorator (75% of the ornaments are 2-3 feet from the bottom!). He also seems to have found a new favorite book for the seaon, "The Little Drummer Boy" (one of my childhood favorites). We even sang it while playing his drums the other day (thanks Uncle Jason for the cool South African drum!).

My almost-4-year-old (who regularly asks for things for his birthday - he seems to think it's next week, not in several months!) is starting to write his letters. I've included here a picture of him showing off the word 'pentaceratops' on his doodle-pad. He copies dinosaur names from the back of his puzzle pieces. I feel like I should be teaching him to write, but he's practically teaching himself!

Oh, and we did have a nice Thanksgiving together - just the four of us, but LOTS to be thankful for!

One Year Check-up (in Dallas)

2010-11-20T20:09:00.000-08:00

It hit me the other day that November 15 was our closest check-up to the one-year anniversary of Nathanael's cord blood transplant, so I asked Brad to take a picture of the two of us before we left for the hospital the other day. At this point our doctor in Cincinnati doesn't need to see us until after the first of the year, so we won't have a one-year check-up there. It was relatively uneventful, except that we discussed the weaning schedule for Nathanael's oral hydrocortisone. :) Barring any GvH flare-ups or other issues he should be off all steroids by the end of January. Yay!!!

I should also mention that this visit also substituted for a normal 15 month check-up, and I was a little discouraged that his weight is almost exactly 1 kilogram more than he weighed 12 months ago, at the time of his hospital admission. His current weight is about 8.2kg, and at just under 3 months of age he weighed 7.14kg. He has weighed as much as 9.5kg (while on IV fluids and lots of steriods), and we have seen fluctuations based on things like medications and teething patterns. The good news is that he has grown almost 2cm in the past month or so! He's now around 67cm long (around 27 inches). For now, the endocrinologists are not concerned about his growth, though he has "fallen off" the growth charts. We do expect to see quite a bit of growth once he is off steroids in the spring.

Please keep us in prayer during this RSV and flu season, that we would all stay healthy, and that Nathanael's immune system would continue to grow.

Tired little boys...tired parents

2010-11-20T10:56:00.001-08:00

So here's how things were in our house the other day...but not a whole lot has changed. Some days we are just so wiped out! I thought you'd all enjoy some pictures - even tired ones! - of our precious little boys...however, Brad and I are less cute when we're tired, so you're going to have to take my word for it that we're tired too!

1 nap x 2 hours = 3 haircuts...I love this math!

2010-11-12T14:46:00.000-08:00

Many of you have commented on Brad's hair lately (or at least that's what he tells me)...and since I noticed he was pulling it back from his face and twirling it with his fingers I realized it was time for him to have a haircut! I also noticed that Jamison's hair was starting to fall over his eyebrows and ears. So since Brad took Thursday off so we could take Nathanael to the endocrinologist, we were al l home together in the afternoon, and here's how we utilized the little guy's naptime:

And just in case you're wondering, I did NOT cut Nathanael's hair yet! The third haircut was mine, and I didn't take any before and after photos. Suffice it to say that Brad couldn't even tell the difference, even though I felt much better about losing those split ends!

Halloween 2010

2010-11-11T12:37:00.000-08:00

Here are a few pictures from Halloween...in one you'll even see the praying mantis catching a ladybug, and in another he tries to pounce on a large spider from across the street! Oh, and as much as Jamison was excited to dress up, Nathanael clearly lacked enthusiasm for his cow and bear outfits. He was still awfully cute though! All in all, we had fun as a family, and saw some friends, which was, after all, the goal this year. Maybe next year we'll participate in more neighborhood festivities...but for now we're thankful for small blessings like getting out for an hour or so. :)

Nathanael talking and playing

2010-10-31T20:45:00.000-07:00

Vent: I just needed to share this...

2010-10-31T12:22:00.000-07:00

Okay, I noticed that in the last several days it helped me to share some of my frustrations with friends who understand our situation and some of its limitations. I'm sharing this now to make myself feel better, and to give a glimpse of our daily ups and downs to others who pray for us and want to understand. So here goes...

In Cincinnati we have one lead doctor, a nurse-practitioner, and a nurse coordinator who help us communicate with that doctor. Of course she is backed up by an excellent team of other doctors, and there are other wonderful NPs and nurses, as well as child-life specialists, social workers, a speech pathologist, nutritionists, etc. Every time we went in for clinic or infusion visits we were seen by a doctor - many times someone else, as our doctor travels internationally on a regular basis. One of my favorite doctors was a hematologist who always wanted to take Nathanael home with her! We also had great experiences with other teams: the pain team docs and nurses, the CVC (central venous catheter) team nurses, the lactation nurses, the pharmacists, radiologists, and many others. They all answered to our doctor, who is both an immunologist AND a blood/marrow transplant specialist, and who handles MANY transplants for children with rare immune deficiency diseases.

Here in Dallas we have a BMT doctor in the Center for Cancer and Blood Disorders, a nurse coordinator, and a team of residents/fellows/nurse practitioners. We also have an immunologist (in the Outpatient Pavilion) who has another nurse coordinator and a team of nurse practitioners. Additionally we have now been referred to a dermatologist (outside the hospital), a team of endocrinologists (inside the hospital), and a general surgeon (who handled the surgery a few weeks ago), as well as the team in Special Procedures, where immunology patients go to get infusions. What's difficult for me right now is that I feel like we have a team with no quarterback...so I end up taking the snap every time. What's the problem, you may ask? I AM NOT A MEDICAL PROFESSIONAL!!!

I realize that our situation may have been complicated by our choice to have the transplant done somewhere else, but I still have no regrets about that choice. I recently found something on the website of a family whose sons had bone marrow transplants at Cincinnati Children's (our visits overlapped a little last year, though I didn't know the family personally), and after losing both sons to the same rare disease they have started a foundation in memory of their boys. Their story is gut-wrenching (get the tissues if you plan to check out their site), but the description of their decision to start fund-raising for an outpatient housing area for transplant patients at CCHMC really sums up much of what we love about the hospital. Below is the link:

http://www.matthewandandrew.org/why-cincinnati-childrens.html

"In addition to the knowledge, we thought the team approach to rounds was extremely important and helped reduce the rate of error. By having a doctor from each discipline present, everyone was able to discuss the issues, concerns and plan for each day. Daily rounds typically consisted of between 12-15 people."

Here are two quotes they used from the CCHMC websit that really stood out to me:

"Our multidisciplinary team has performed more than 1,300 transplants in the program’s 20-year history - currently about 80 children each year. In 2009, our experts performed 93 transplants- making us one of the largest programs in the United States."

  "The immune deficiency and histiocytosis team at Cincinnati Children’s treats patients with more than 80 different kinds of immune deficiency and histiocytic disorders. Our physicians have developed treatment regimens that improve survival and are now the international standard of care. These specialists manage each stage of patient care, from immunologic testing to bone marrow transplant, if needed."

http://www.cincinnatichildrens.org/svc/alpha/c/cancer-blood/bone-marrow/default.htm

Having said all that, I do understand that it must be a challenge to be the "caretaker" doctor for someone whose lead doctor is out-of-state, and not available for questions. When I call Cincinnati I almost always talk to the BMT/Immunology Nurse Coordinator (I should have his number on speed-dial by now!) and if he's not around I call our nurse practitioner. They both have access to our doctor, and ask her all the questions they can't answer for me themselves. However, everyone involved in the situation presumably agreed to their assigned role, and I thought that also meant they agreed to communicate with the others involved in Nathanael's care.

If you're still with me, thanks for listening! I don't expect everything to be easy, but there are challenges to our current situation that are different than I had expected...and it helps me to share this with friends so I don't feel so alone.

Bree

Who is that masked man?

2010-10-26T20:52:00.000-07:00

He's looking for places to "pounce"... Anyone want to open their door to a praying mantis before too many other kids are out on Sunday night? Drop me a note to let me know if you're in McKinney and are interested. We'd like to get him out a little bit and he'd love to show off his costume for some friends. :)

breebanks@earthlink.net

No more heparin syringes in my diaper bag!

2010-10-23T14:45:00.000-07:00

This afternoon the house is quiet...what a treat! Since the boys are all fast asleep and it's storming outside, I decided to work and clean in the kitchen. I threw in a load of laundry, washed a bunch of Nathanael's toys, and then decided to organize and consolidate medical supplies.

Now, you know that it's been just over two weeks since Nathanael's line-removal surgery, but it just hit me today: I no longer need to carry heparin syringes in my diaper bag! :) This is one more step towards becoming a more "normal" mom. (Please note that the word normal is in quotes... that's on purpose since I know that normalcy is a relative concept.) For me this is a lot like the time following my second surgery in 2002 when I stopped carrying Neurontin and Oxycontin in my purse: I felt "normal" again. (I'm pretty sure most of my friends don't carry narcotics around, just as they don't carry heparin.)

Don't get me wrong. I feel like I had adjusted to our "new normal" and had learned to be prepared, with Central Venous Catheter emergency kits in our cars and in the house, with heparin and saline syringes with me in case I needed to flush Nathanael's lines while waiting to see the doctor. I even carried Duoderm (extra thin skin protectant) and Hypafix (flexible tape) for when he had an NG tube, as those were the most helpful things we found to keep it in place. I'm just thankful that these things are no longer part of our life. (Well, we could possibly use an NG tube again, but unless he gets sick it's not very likely.)

So today I am thankful that the Lord has closed the chapter that included my little boy having tubes in his chest. We still have a long way to go towards recovery - in many ways - but this is progress.

Oh, and do y'all know anyone who needs 27 syringes with 3mLs of 10u/mL heparin? They don't expire until 2012.

First "real" bath in 11 months!

2010-10-15T21:04:00.001-07:00

Here are a few pictures from the past week:

The day before surgery (10/6/10 - with the extra dressing covering the end of the red/left line after it seemed to rupture/break):

In the hospital: isn't the gown just too cute on him?

A few days later, during his first "real" bath in 11 months! (Yes, apart from once when he made such a mess that I HAD to cover his chest with plastic wrap and clean his legs and bottom in a small tub of water, this really was the first time he's ever been allowed to just sit in water and play!) So he's not exactly in a bathtub yet, but this is better than sponge-bathing, which has been necessary in order to protect those dressings on his chest all these months.

These pictures are funny to me because of the way he put his foot up on the edge - he does that in his booster chair too, and he also puts his right foot up in the air when he nurses...it's really funny!

Here he is showing off his chest - not even a single stitch! (No stitches were used - the lines were so small that the surgeon just let the skin heal without them, and they're now just small scabs.)

Jamison wasn't really too interested in the whole thing, but he LOVES to sit around in his bathrobe after taking a bath. Someday the boys will splash together in the bathtub, but for now this is a significant improvement!

Lines are out! Let the fun begin!

2010-10-07T14:51:00.000-07:00

Thank you for praying for us this morning! Though I was quite nervous, all went very well this morning, from getting up and being on time for our 7:15am check-in, to having BOTH procedures done at once, despite the fact that only one was scheduled, to Nathanael waking up quickly and feeling pretty good immediately after surgery. God blessed us in many ways today and we are very grateful.

Please do continue to pray for Nathanael in the next several days as his incision and line-openings heal. We need to change his diapers as soon as they're wet (and especially if they're dirty!) in order to promote healing and prevent infection. Now all that's left on his chest are a few band-aids covering the holes where those lines went in...no stitches were used! In fact, once his incision and openings heal we can even put him in a real bath and let him splash!!! :)

Thanks again for keeping us covered in prayer today,

Bree

Pull those lines!

2010-10-06T18:23:00.000-07:00

Just an update, for those of you who know how much I am tired of those central lines in Nathanael's chest...please pray for our family tomorrow:

Nathanael's central-line-removal surgery has been rescheduled for tomorrow. I'm pretty sure that one of his lines split this morning while I was flushing it, and I was pretty scared. (I've done this almost every day since January, most days I can do it without thinking much...but today once it happened my hands were shaking.) After hours on the phone with our nurse-coordinators both here and in Cincinnati (also trying to set up consults with a dermatologist and an endocrinologist) I heard back from a surgeon who was willing to do the surgery tomorrow morning while he's on call. This is a blessing, as it needed to be done soon (it had been scheduled for 10/15), now we can go ahead with his immune globulin treatment on Monday (which we would have needed to postpone), and I didn't have to drag both boys in to the hospital today to have the nurse check the line.

Please pray that I would get up on time to leave by 6:00am, that Nathanael would go back to sleep in his car-seat, and would sleep until he gets into the OR, as he'll have to fast after midnight (and it's easier not to eat when you're asleep!), that we would not encounter germs as we enter the general surgery area, and that all the doctors and nurses would be especially cautious because of his lack of an immune system, AND especially that the surgery (line removal and circumcision) - and his recovery - would go smoothly. Oh, and please pray for Brad, Jamison and I, and praise God with us that after 11 months these lines will no longer be part of our lives! :)

Sorry for all the details...but I wanted to share how to pray/praise specifically. Thanks for praying with us!

Bree

Day +300 and nothing new to report...

2010-09-19T20:50:00.000-07:00

So, here we are...300 days post-transplant. Not like that's supposed to be a big milestone, but I think when we started this journey 13 months ago we thought we'd be farther along by this time. Doctors say that it takes 1-2 years to rebuild an immune system, and in the past 200 days or so we've learned why: setbacks.

By all accounts Nathanael sailed through his first 100 days, but after that things got a little more complicated. His central line infection (in March) put us back in the hospital for 2 weeks (and on heavy antibiotics and high-dose steriods - which needed to be weaned over 12 weeks). His bout with autoimmune hemolytic anemia kept us in Cincinnati for a month instead of a week, and put him not only on steriods again, but also on retuximab (which supressed the growth of his B-cells, an important part of the immune system). His two urinary tract infections in the past month have put us in the hospital twice (again on heavy antibiotics...at least we're not on high-dose IV steriods anymore!), we've seen his weight fluctuate, and have had to use an NG tube again for a few weeks. Now we're at home, but still giving IV antibiotics (Gentamiacin - at least it's Q24hrs, instead of Q6 or 8!) for another two days. We're also facing a VCUG test to make sure that he's not experiencing any kidney reflux that could be causing these UTIs. Any time a catheter is inserted (as was done for urine collection, and will be done fpr the test) we run the risk that he'll get an infection, so I'm not thrilled about this. We also need to get a surgery date for circumcision and central line removal. (Part of the issue here is that before his lines are removed we need to test out a new form of immune globulin to make sure he tolerates it well. If he doesn't, then we'll have a port put in his chest, but if he does, he can be free of lines!)

So those are a few of our setbacks, but another result of all that is that Nathanael still takes between 8 and 13 oral medications each day (some of them 2x and some 3x daily). Giving them is stressful for all of us (I think it's even hard on Jamison to watch...) as it seems like some awful kind of torture. Despite all my best efforts, the most effective method I've found is to lay Nathanael in my lap, squirt medicine in his mouth, and pinch his nose so when he cries he is forced to swallow. UGH! Yes, I've tried blowing in his face, tickling/kissing him, putting it into the side/back of his mouth, distracting him with Daddy/TV/big brother, hiding it in some of my milk...you name it, we've tried it. I may resort to putting an NG tube back before too long. It stinks for my baby to have another tube in him, but giving meds becomes EASY with it in. Even checking placement (a little bit of an irritation) is pretty simple - just get me my stethascope and a clean, empty syringe...all I need to hear is a little "pop" of air in his tummy. So because most of these medications are given to prevent illness/infection, he will need to take them until his T and B cells grow, which could be MANY more months.

Last year I met a woman who spent day +365 back in the hospital with her son, and I was so sad for her. She had been so kind to me on my first day inpatient with Nathanael, and I couldn't imagine being that far post-transplant and having to go back into the hospital, but at this point it actually seems feasible. This really has been a much more difficult journey than I had imagined. I now realize how little I knew about this from when Jeff had his transplant...so much has changed. It does make me see how God had protected my brother though. How else could he have survived having two older siblings in school, bringing home germs every day? What about the possibility of GVHd with all of the sun exposure? (Or was it just God's providence that we lived in northeast Ohio, where they get fewer days of sun than the pacific northwest?)

So, apart from all of that, Nathanael is a pretty happy little boy. He is quickly becoming more mobile now that he feels better. He is starting to try out an "army crawl" and today reached the edge of his blanket on the floor and grabbed hold of some of Jamison's (large) puzzle pieces. (Of course, I quickly grabbed the pieces and wiped his hands with Wet Ones - away with the germs!) He LOVES to watch his big brother, and he is interested in everything around him. He has started to eat solid foods again (he really liked the mac n cheese in the hospital!), and is now taking sippy cups with both spouts and straws.

Jamison is becoming more and more independent...just ask my mom, who just spent a week with him! He wants to do everything himself, and sometimes that wears me out, and sometimes it warms my heart. He has been asking us recently, "Teach me to pray" so his most common prayer these days is "Dear Jesus, thank you for this day, thank you for this food (yes, even at naptime!), thank you for ______ (loving us, for Nannie getting home safely, etc.). Please give us a good day (or night's sleep), and please use us to glorify your name. In Jesus' name, Amen!" It is so sweet! Of course, what's NOT so sweet is when you want to pray something else and he throws a fit. Sequence is very important to him, so he likes things in the same order each time. And he is very proud that he's growing up into a big boy. He likes to talk about how someday he will grow big enough to reach the ceiling. We just keep reminding him how tall we are, and that someday he'll be as tall as (and hopefully taller than!) we are! ;)

I thought you'd enjoy a few recent pictures of the boys. I'll post some videos later this week, and I've been meaning to find some one-year-old pictures of each of them to post side-by-side...I'd like to see the similiarities and differences, and it would be fun to see how much Jamison has grown.

Please do keep us in prayer, as it's so easy to get discouraged these days. Pray for opportunities for Jamison to play with other kids and to learn to share, for Nathanael to continue to recover and stay healthy, for him to respond well to his new medication, and for the right date for surgery, for Brad and I to be focused on the Lord and caring for our family, and for God to use us in some way to bring glory to Himself through all of this. Thank you for standing with us!

Happy Birthday Nathanael!

2010-09-10T21:43:00.001-07:00

Happy Birthday Nathanael!

Since we spent Nathanael's first birthday (August 19) in the hospital we didn't really celebrate at home until later. However, the Child Life staff in the Hematology/Oncology unit made a wonderful banner and put it up in our room (it's now in our living room!) and brought gifts! They offered him a cake, but I decided against ordering a sheet cake for him, as I didn't want to eat it all myself!

So when we finally sat down to open some presents Jamison was more excited about it than Nathanael, but I thought I'd try to chronicle the present-opening. After thoroughly washing Jamison's hands I asked him to help his little brother...and it was so sweet!

While we were at the hospital Brad and Jamison enjoyed a visit with PopPop David and Valerie, and we enjoyed a short visit (and some clean laundry!) when they came down to the hospital. :) Hopefully next time we get together we'll all be in the same place at the same time, and we'll get to celebrate at least one family birthday together!

Okay, so I tried to upload some cute videos, but I'm not sure if they'll work, and I'm having trouble (could be browser-related), so I'll probably try again in a few days. Hope you enjoy the pictures though!

d

What do I need now?

2010-09-04T19:18:00.001-07:00

Okay, so here's my newest challenge: clear, meaningful communication. Those of you who know me well know that I can use LOTS of words and STILL not communicate a clear message, so this post is an attempt to answer what some of you may be thinking, and in the process to clarify how people can continue to support us as we walk through this phase of our journey. I'll even use bold type to make sure it's clear. :)

I need conversation. I need people to call me. It can be really hard for me to call people, and it's pretty easy for Jamison and Nathanael to take up my whole day...but I need to talk about something other than dinosaurs, volcanoes, Disney characters, and what one animal said to the others. Don't get me wrong - I'm thrilled that Jamison loves to talk to me, and I love that he's so curious about things (He asked me the other day if God could move an active volcano, and when I told him that He could move it into the sea if he wanted to Jamison answered with, "Wouldn't the fire burn up the water?" He was referring to my favorite OT story in his children's Bible where Elijah prays on Mt. Carmel and the fire burns up the whole alter and all the water around it. I LOVE that he thinks that way!) BUT I still need to talk to friends about life, parenting, work, sports...whatever. I do also like to talk about Nathanael's treatment, doctor visits, medications, and how both boys are doing in general.

I need help cleaning and organizing. Because the vast majority of our time (well, mine, Jamison's and Nathanael's) is spent in our house, I am finding that there is a lot of work to be done here to create a calm, relaxing environment. Keeping a clean, organized home has never been my strong suit, and I could use help finding things that work for me. Of course, Brad and I both have moms who are naturally clean and neat, and are great at these things, but only so much can get done during their visits, and then I still have trouble keeping up with the systems set in place. A good friend recently lent me a book on organizing, and I subscribe to FlyLady.com, which would be really helpful if I had a way to check email throughout the day for the cleaning reminders.

As a side note, we can have people in the house, but I like to know that whoever is coming over is healthy, that the members of their household are healthy, and then I have them remove their shoes, wash their hands, sit on a sheet on the furniture, and keep their distance from Nathanael. Everything we can do to limit the introduction of new germs into our home (including pet dander) makes it easier to keep the boys healthy.

I need help with random errands. This one occurred to me today when I realized that I have LOTS of plastic bags to be recycled, but I rarely get to a place where I can recycle them. And even though I could get the boys in the car and drive to the store I can't get out and leave them in the car while I run in to drop off the bags. Ugh! Also things like dropping off dry-cleaning, making photocopies of various paperwork for applications for programs like the Medically Dependent Children's Program (MDCP) and mailing things through the post office or FedEx/UPS would be really helpful. Most of these things are rare, but tend to pile up since I can't do them without help.

I need understanding, or compassion, even in the face of confusion. This one must be the most difficult, but I had to at least mention it. I know that many of my friends will not get what it's like to be in my shoes now, and to many my self-imposed restrictions may not make sense at all. However, please consider that everything we do is geared towards protecting the health of our boys, and keeping our family together. With that in mind, I wash my hands MANY times a day (more than I can count, I'm sure) and limit contact between the boys, wash any toys, clothes, burp cloths, etc. that hit the floor before Nathanael can touch them again, change my clothes (and Jamison's) after we play or work outside or in the garage before re-entering the house and sitting on the furniture...ALL so that we limit Nathanael's exposure to new germs. I tell Jamison that we want Nathanael to stay healthy because it helps his recovery, but also because it allows our family to stay together, rather than two of us having to go back to the hospital. I pray that it doesn't scar him (no, that's not a typo...I meant "scar" not "scare") for life, but I feel like I need to be honest with him and to motivate him with something that's not only in Nathanael's best interest, but in his interest as well.

Where is Nathanael in the recovery process?

*He does not take any more IV medications at home! (I do have to flush his central lines daily.)
*He takes 10-12 oral medications each morning and night, and one around 3pm daily. It normally takes me around 30 minutes to get them ready, and an hour or so to give them.
*Most of his labs (drawn every time we see the doctor) look normal, BUT he still has not started to make B cells, and has very few T cells (specialized lymphocytes that play an important role in the immune system). His recovery was set back by the treatment of his autoimmune hemolytic anemia in May.
*If all continues to go well, we expect that in 6-12 months he will have T and B cells, and at that point we'll probably start to expose him to more germs and allow him to be around other people.
*We are moving towards having both central lines removed from his chest, hopefully later this month. That means that one medication will have to be given weekly at home, using small needles and an infusion pump. I never wanted to have to stick my baby with needles, but I'm sure the parents of diabetic kids say the same thing. It would be so good for him to not have those lines anymore though, and to not have to have a port-a-cath in his chest would be nice.

*Both doctors have agreed that we can start to allow Jamison to be around other kids, but only in very controlled situations, and not in places like church. (Feel free to contact me if you're interested in a playdate! I'll have to work around Brad's schedule so he can stay with Nathanael, but Jamison and I would LOVE to get out!)

And why can't I get out more? I'd LOVE to, but at this point it's still difficult for Brad to handle Nathanael (and keep him from pulling on his central lines during diaper changes!), I want to be home when Brad is home (since we don't have a lot of time when all four of us are together), and by the time he gets home in the evening we need to eat dinner, prepare the medicine tray, get Jamison bathed and ready for bed, give Nathanael his medications (which can take anywhere from 30-90 minutes these days) and then collapse into a pile and fall asleep. That takes me from about 5 or 6pm to 10pm or so each day. Afternoon nap time is a time when I can sometimes get out, but that can only really happen on a Sunday (when Brad doesn't have a meeting), or on his day off when I'm not at the hospital with Nathanael. At this point I'm not really comfortable asking someone else to care for the boys during the day, as those central lines in Nathanael's chest still can make ME nervous after 9 months. Oh, and the other major factor for me is that Nathanael still breastfeeds about 6-7 times a day (yes, that is by choice!) and we're not working on weaning in any formal sense of the word. He can drink from a cup, and when he feels good he eats plenty of solid table food (low bacteria only), but when he feels sick he reverts back to a milk-only diet, which he has done for the past couple of weeks.

So I guess I'm asking here that friends would try to put themselves in my shoes: What would you do if every misstep could cost your child his health? How cautious would you be if you knew that your small risks taken for personal gain could land him back in the hospital, pumped full of more medications, setting back his recovery by weeks, or even months? I loved seeing my family in August, but when I thought that he had developed respiratory problems as a result of staying in an old hotel room with very poor air quality I was devastated, and began to blame myself for sacrificing his health for my needs. (As it turned out, he was hospitalized for a urinary tract infection (UTI), and his lungs sound clear (though if he did ingest a mold or fungus we might not see any signs of a problem right away...it could take months to surface.) It is possible that he was irritated by something which caused the coughing.) But having spent many weeks in the hospital (about 9 in the past 9 months), and having talked with many other parents, I know enough to know that each small risk can be costly. I ask each day for Jesus to help me trust Him, and then I live, in whatever way I can, to take care of my family.

Okay, so I just re-read that last part, and while it sounds a little morbid, and more than a little paranoid, but I don't think it's an exaggeration. However, I know that it can also hold true for healthy kids...there's just not such a great risk with exposure to everyday germs and other people.

Most importantly, I need continued prayer. I am exhausted pretty often, overwhelmed by the responsibility of caring for both of my boys, and in need of spiritual refreshment, support, encouragement and a listening ear. In the hospital it's easy to not feel as lonely, because your community is all around you. I used to tell the nurses and social workers that they were my cheerleaders. While in the hospital in Cincinnati we parents would talk in the family lounge, which was helpful. But I haven't been to a church worship service since last year, and miss that time, as well as the fellowship that goes with it. A good friend gave me a copy of "Jesus Calling" by Sarah Young, and that devotional has been incredibly helpful, but it still seems to me that my faith is stagnant rather than growing during this time. Please pray for me, and for my family.

Congratulations if you stayed with me through this long post! I realize it's a lot less clear than I would like it to be, but honestly, I don't have the time or mental energy to edit it, so I'm going to accept that it's far from perfect, and post it anyway. So I welcome your questions or comments, as I also appreciate your friendship and support throughout this journey.

Bree

Pictures

2010-08-26T23:05:00.000-07:00

I'd love to write about the past month, but in the meantime, here are a few pictures:

What a trip!

2010-08-17T17:52:00.000-07:00

So, we made it! In early August we went to Cincinnati for Nathanael's 9-month-post-transplant check-up. His doctor was thrilled with his progress, his blood counts looked great, his skin looked clear, and all his virus tests were negative again. They did warn us again about the dangers of sun exposure, so I really need to start using sunscreen even for car rides, and even when I plan to keep Nathanael completely shaded or covered. Any sun exposure at all (for now, at least) puts him at risk for Graft vs. Host disease (GVHD), which can lead to all sorts of problems. Even for years to come, long after his immune system is working and he's out playing with other kids, we will still need to be diligent about protection from the sun, but really, all little kids need to be protected from sunburn to reduce their chances of developing skin cancer later in life (yes...this is a public service announcement...), so it's really just a matter of making it a priority all the time.

We enjoyed our stay with a friend, spent some time swimming in her pool, and then spent the weekend with my family for Jeff and Julie's wedding. It was great to see my parents, my brothers and their wives, and my cousins...I was just sad that we needed to keep Jamison away from everyone too. Of course, I knew Nathanael would need to stay in the hotel room, but I wished that Jamison could have been out playing with his cousins.

Our drive up took over 19 hours, and we found that driving overnight was not as good an idea as it had sounded when we discussed it. In fact, both boys were awake from 1am to 5am, which made for a much less peaceful time (and less sleep for me) than we had anticipated.

Our drive home took 23.5 hours (UGH!) and included several phone calls to the on-call doctors at both of our hospitals, as Nathanael developed a cough (and some gagging) that concerned us, AND included a punctured tire at 1am in rural northeast Arkansas (Prarie County, to be exact). We were just so thankful to finally get home, as I did NOT want to take him into a hospital where we didn't know how things worked. I get nervous enough when someone I KNOW has to access his central line, let alone someone I've never met! God provided for us in lots of ways, and gave us a few interesting stories that have already made their way into some of Brad's messages... ;)

So this is only a fraction of what I had wanted to post when we first arrived home, but a lot has happened since then...so I'll write more later. Thanks for checking on us, and for keeping us in prayer!

How are we doing?

2010-07-28T21:06:00.000-07:00

Brad tells me that he is often asked, "How's Nathanael? How are Jamison and Bree?" Since we still don't get out much to see people (my big adventure this week was taking BOTH boys to the hospital, and spending 7 hours there, plus 2 in the car) here's the lowdown on us:

Nathanael still has no immune system of his own because he is still on steroids, which suppress the immune system, and in his case, keep him from growing T and B cells (lymphocytes required to fight off infection). He will be off steroids (except for a small "physiologic dose", which will be taken orally - no more IV meds at home!) after August 5. :) Yes, I'm THRILLED about that!

Besides that he is a generally happy little boy, doing most of what almost-1-year-olds do: eating a lot of everything (he now loves beans, peas, crackers, cheese...he tried zucchini tonight), babbling up a storm, grabbing everything within his reach (and sometimes things out of his reach), watching his big brother, and just wanting in on all the action around him. If I let him loose on the floor I think he'd end up rolling all over the place.

Developmentally he's on track with everything except gross motor skills (he doesn't yet pull up to standing, and cannot move himself from lying down to sitting up). His doctor reminded me that his weight gain (he weighs around 19.5 lbs now!) and leg weakness (caused by his time on steroids) both factor into this, and while she's not too concerned, has recommended a PT consult, which should happen sometime next month through ECI.

Jamison is doing really well, although today he tried testing the limits a few times, and spent some time in "time out"...not fun for either of us, but it does help. Well, that along with the removal of favorite toys. He's growing and changing so much right now that we just keep trying to adapt. He loves to sing (today it was "Twinkle, twinkle little star" but instead of "like a diamond in the sky" he'll substitute things like, "puzzle" or "flag" or "truck" for "diamond". It's cute to see what he comes up with), he LOVES puzzles, and now tries to do them quickly, and he plays with his cars in the parking lot (kitchen table) and his animals at the zoo (basket) or on the table in the living room. He also LOVES to hear us make things talk (i.e. "Make Nathanael talk" or "make my carrots talk") and wants to hear us make up stories about the pictures in his puzzles, or make up songs about various states (J: "Sing the Minnesota song." Me: "What Minnesota song?" J: "The Minnesota song!" Me: "Oh, I guess we need to make one up..."). He is very creative, he even has imaginary friends in various states, and a few in Canada! On Monday, when the doctor addressed him as the "famous Jamison" he said, "Miss April calls me Jamison the Puzzle Master." It was so cute!

So how am I doing? Tired, busy, thankful, worn out, overwhelmed. I could write a lot here, but it's late, the computer battery is almost gone...the story of my life these days. Please do keep us in prayer, and feel free to call (just call on the home phone, as cell minutes are a precious commodity these days!). :)

Bree

Two Happy Little Boys

2010-07-23T20:48:00.000-07:00

Here are a few recent pictures of our two happy - and busy! - little boys:

Almost every day, I thank the Lord that I am home with my family, and that BOTH boys are with me. In spite of all the limitations of our relative isolation, I LOVE being able to hug both my little boys each day. :) Please keep praying that we'd all stay healthy, and that Nathanael's immune system would start to grow as soon as he is off his methyprednisolone (last dose of IV steriods is Thursday, August 5!). Then we have his 9-month-post-transplant check-up on August 11 in Cincinnati. Please pray for travel plans and safety as well. Thanks!

Outside!

2010-07-04T05:42:00.002-07:00

So we're thankful for the break in the weather (rain, lower temps) and have spent a little more time outside lately. We still have to keep Nathanael out of the sun, but if he can stay shaded in the stroller (or inside, while we listen on his new monitor!) then we're okay. :)

The other day before the rain started Jamison "helped" Brad water the lawn, and discovered what fun it is to outrun the sprinkler!

Another day we played outside (while Nathanael took a nap inside) and Jamison found a new friend...a grasshopper! It was so cute to see him catch it, but despite his best attempts to be gentle, the poor, helpless creature wound up with two broken legs. We did finally put him in a jar to take inside, and we fed him grass, and gave him fresh air, but he didn't last the night. I think the broken legs would not have helped him much in his natural habitat.

The third day shown here is of our first walk with both boys in the new stroller! (Or at least this is the first one I can remember!) I figured out that I was pushing over 50 lbs worth of kids (32 + 19.5) and 15-20 lbs of stroller for 45 minutes - quit a workout! The good thing was that Nathanael conked out after about 10 minutes, so Jamison and I could look for birds, talk about trees, and enjoy the time together.

Long day tomorrow

2010-06-27T12:52:00.000-07:00

Tomorrow Nathanael and I will spend all day at Children's Medical Center Dallas, where he will see BOTH his immunologist and his transplant doctor. He will also have two infusions, one of IVIG (immune globulin, the one he's been taking almost weekly since September), and one of Pentamidine (an antibiotic that he takes monthly, only in the hospital, that is given over several hours). Not really a big deal, as these are both old hat...it will just be a long day for us since we'll leave before 7am and hope to be home by 5 or 6pm.

Please pray for the logistics of tomorrow's appointment, as we also have to do his cap and dressing change (for his central lines - done every week) and that's usually a little stressful for me. Also please pray that we would not encounter any sick people in the hospital tomorrow, and that people would honor my request to be placed in a room immediately to avoid exposure to other kids and their families in waiting areas.

Just a note: I hope my Facebook updates and posts on the blog don't sound liking I'm whining. I am VERY thankful to be home with all of my boys! There are still many challenges we face on a regular basis (toilet training while keeping the house as germ-free as possible is just one...), but at least we can face them together. I do want to share honestly without sounding ungrateful for all that God has done for us - much of it through the prayers and support of all of you! There are days that are downright exhausting and discouraging, but again we have so much to be thankful for. I am still sorting out how to process and handle all these changes in a way that is healthy, authentic (as opposed to putting up a facade), and helps us to open our eyes to see God at work in our lives and in those around us.

One more set of prayer requests: Please pray for J.M., as he is in the hospital right now, dealing with a post-transplant infection. Pray for his recovery, and for his parents to get the rest they need. Also pray for L.B. and her family as she prepares for her transplant. A praise is that she was well enough to attend her daughter's wedding last weekend - thank you Jesus for answered prayer!

Happy Anniversary to us!

2010-06-21T18:20:00.000-07:00

Today is our thirteenth wedding anniversary...and our gift this year is a week with NO DOCTOR VISITS! This is the first week since October that we haven't had to go in for tests, check-ups, or treatments...praise God for a day of rest! We did have the home health nurse come to assist with cap and dressing changes, but that only took an hour or so out of our day, and we didn't have to drive anywhere. :)

So to celebrate Father's Day, our anniversary, and our day home all together, I made a cheesecake, we had gourmet pizza (well, I had gourmet pizza with garlic butter sauce instead of tomato sauce, Brad and Jamison just had cheese pizza), and we set the table and even put out candles...Jamison couldn't figure out why we had candles out at dinner. It was a good day.

Nathanael started to say "Da da da" just in time for Father's Day, which was really fun, and is very cute. He just turned 10 months on Friday and is becoming such a little boy...I can't believe how fast he is growing up! Of course Jamison seems so grown up to me now: he's learning to use the toilet, is talking up a storm, loves it when we tell him stories, and is a great helper around the house and yard. His new interests are volcanoes ("When can I see a volcano outside?"), the "Statue of Livertry"

a (see the "pose" in this picture - thanks in part to a recent issue of the DTS magazine, Kindred Spirit, with its focus on immigration and its great pictures!), and the "50 states that rhyme" song. I get tired just trying to keep up!

I've also managed to miss posting a major milestone: we hit 200 days post-transplant sometime earlier this month! The 100 day mark was such a big deal (special immune studies were done, etc.) that day 200 came and went without a mention at all. I can't believe it has been 7 months since we were admitted to the hospital for treatment. Our prayer now is that Nathanael continues to recover well, gets off steroids, and starts to grow his own immune system. Of course we'd love to be able to stop giving 8 different oral meds twice a day too. (Brad actually described it as "waterboarding" the other day...a very disheartening description, but probably somewhat accurate.) The plan is to see our doctor in Cincinnati again in August when we can combine that visit with the trip to Columbus for Jeff and Julie's wedding. Fun!

Oh, and to see a video of Jamison listing the 50 states, check out Brad's Facebook page at: http://www.facebook.com/home.php?#!/video/video.php?v=440105515198&ref=mf. It's a little hard to hear, since he's facing away from the camera...but it's cute. (The lyrics can be found at the link listed above.) Enjoy!

Routine...what's that?!

2010-06-10T21:23:00.000-07:00

OK, so I haven't posted in two weeks again...where does the time go? Well, I'm trying to establish a routine around here, but most of you know that has never been my strong suit. Or at least having an organized, formal routine hasn't really worked for me. You could say that my "routine" had been procrastination! At any rate, here's the latest at home:

*Nathanael is doing well overall. It seems that his blood counts have stabilized, in fact his hemoglobin was 12 the other day...completely normal! That's not to say it couldn't change or drop again, but for now we're only having labs drawn once a week since his numbers have stayed so good. That also means we're only going to the hospital once a week for labs, check-up, IVIG, as well as central line dressing and cap changes. It's nice to get all of this done in one day, and it also means no home health visits for now.

From a developmental standpoint he's doing pretty well: he sits in his chair and eats whatever we put in front of him (though zucchini did NOT go over well yesterday...), he smiles, makes lots of noise, reaches for toys and people, cries when forced to take his oral medications (UGH!), and apart from not crawling or standing yet (ok, I haven't given him enough "floor time"...) he's on track, and we are very pleased.

*Jamison continues to adjust to being a big brother. He still loves doing puzzles, playing cars, building with blocks, reading, and constantly asks, "When can I be loud?" His speech is continuing to become more understandable, and he's not pronouncing his "s" sounds at the beginning of words - so he can ask for the "swiffer," not the " 'wiffer" when he wants to help sweep up the kitchen floor. :) He really is a great little helper, and is really a sweet little boy. When I was stressed this afternoon he said, "I need to rub your back," then ran to get the "Happy Massager" and proceeded to use it on my back for a few minutes. Of course he also wanted to brush my hair, which - I've learned the hard way - can be a little less relaxing!

*I am trying to figure out how to get everything done, and still have the emotional energy to really care for my family. Some days are better than others. Yesterday I steam-cleaned the kitchen and bathroom floors, washed all Nathanael's oral syringes (yes, that's a whole task...we must have over 100 of them...), did laundry, made meatloaf, and played with the boys. I was exhausted. Today I accomplished a lot less. Of course the minimum is to get the boys fed, give Nathanael all of his meds, keep them clean (well, change Nathanael's diaper and help Jamison on the toilet for #2), and spend some time playing with each of them. Oh, did I mention dinner? Ugh. So please pray that I would prioritize well and make good use of my time and energy.

*Brad is also keeping really busy with work and helping around the house. He's still handling all the grocery shopping for now, and continues to help with cooking and dishes, cleaning the kitchen, Jamison's bathtime, laundry, and whatever else isn't done by the end of the day so we can start the whole process over again in the morning. He also takes his day off on Mondays so he can spend the day with Jamison while Nathanael and I spend the day at the hospital. It would be nice to have a day together at home, but for now we'll take whatever time we can have as a family.

We are so thankful to be home together again, but still need your prayers for continued good health, for Nathanael's continued recovery, and for us to find what works best for us in our current situation. Since Nathanael is still on steroids (immune suppression) we want to be very careful to limit his exposure to the germs of others, but Jamison and I need some social time as well...I guess that'll be another post, since it's getting late and sleep is calling!

Please also pray for our friend LB whose transplant was delayed due to some complications. Pray for her counts to stabilize, for a quick recovery, for strength, and for her family as they come around her for continued support.

Gratefully,
Bree

Settling in at home (by Bree)

2010-05-28T20:03:00.000-07:00

It's SO GOOD to be home! I wanted to share a few pictures with you of life all together. The first one shows the boys at the table after a meal. Nathanael has become a lot more interested in sitting in his booster seat and feeding himself. In the past two weeks he has eaten green beans, sweet potatoes, butternut squash, rice, yogurt, banana and pretzels. He still doesn't really enjoy it when I try to spoon-feed him, but he LOVES to use a spoon - or his fingers! - by himself.

One day after lunch Jamison wanted to play with his cows and sheep - as well as his jungle animals! - on the table...so cute!

Some of these pictures are from my two-week stint at home in April, so I'll post more recent ones in a few days. Joyce and I have been keeping busy unpacking, organizing and cleaning. It's great to have her help!

So these are the smiles that light up my day... and here's one of the sad faces that makes me sad...

When you pray for us, please pray that we would spend our days together in creative, fun activity and work. Being home so much of the time - and with so many restrictions - is not easy, but it keeps Nathanael as safe as possible. Please also pray for our weekly schedule, including our hospital day (hopefully only one day a week!) and home health visit, as well as medication delivery. Many details need to be coordinated, and I sometimes get tired of dealing with them. Also, please pray that we'll find ways to be a blessing to those around us, even those we can't see in person. Thanks for continuing to stand with us!

P.S. Regarding Nathanael's autoimmune hemolytic anemia, his labs show that he is still stable, and does not need a blood transfusion, which is great news!

HOME!!!

2010-05-21T15:31:00.000-07:00

After 18 hours in the car we arrived back at home around 11:00am on Friday. YAY! It was SO GOOD to finally hug Jamison again after being away from him for almost a month!

Thanks to all of you who prayed for a safe journey. We avoided the storms that were passing through Tennessee, but still managed to drive through driving rain - and even some hail! - in the Ozark mountains, just east of Springfield, MO around 1:00am. Thankfully the worst of it only lasted about 10 minutes (although, admittedly, I can say "only" because I wasn't the one driving). We were exhausted by the end of our trip, but so glad we didn't delay any longer, as it really is great to be home.

We had dinner as a family tonight, and both boys sat in their booster seats. I wish that I had taken a picture! Nathanael was going after his green beans and sweet potatoes like he hadn't eaten all day, and Jamison was enjoying the faces that Brad made at Nathanael. I just kept looking at both of them, amazed that we were finally all together again.

In the next week or so I'll try to get a few more pictures posted. Both boys have grown up so much: Nathanael is now 9 months old, and Jamison is 3 years, 3 months. We feel so blessed to have them in our lives, and wonder sometimes what we did before they arrived. ;)

Please continue to pray for good health for all of us, and for us to live for God's glory each day.

Bree

Love this picture of two of my boys!

2010-05-14T05:12:00.000-07:00

Just thought you'd all enjoy seeing that beautiful smile that I miss so much. Pray that I'll be home in a week so I can spend time with Jamison and Brad again.

Nathanael continues to do well...but they want to watch him for at least a few more days to make sure he's stable before discharging us to go home. I'm so thankful for wonderful helpers both here and at home.

:) Bree

"Goodnight Mom" on Skype

2010-05-12T17:51:00.000-07:00

Still in Cincinnati...

2010-05-12T12:35:00.000-07:00

I'm not even sure what to write...there's so much to say right now, and y'all know that I'm not the best at keeping up with this blog. So here's the bottom line: Nathanael is doing fairly well overall, but we still need to get a better handle on his AIHA (autoimmune hemolytic anemia) before we can head back home to Texas. That means for now we'll remain outpatient (an answered prayer) and will have daily blood tests to watch his hemoglobin level, BUT we will probably not be released to go home for another 4 to 7 days. The hospitality and company here are wonderful, but I really miss Jamison and Brad, and would like to get home soon.

We could also use prayers for planning our return trip. One of our doctors (whose specialty is hematology) mentioned that flying in an unpressurized plane (breathing in air with less oxygen)could exacerbate any existing problems with Nathanael's hemoglobin level, however, when I asked another doctor about it she mentioned that she didn't think it would present a problem for him. So, is this just a difference of opinion? Is it an issue of degree (i.e. the degree to which it could exacerbate - and not cause - a problem) or a communication problem? Our dilemma now is to make a decision about whether to fly in three small planes (over the course of 9 hours or so) or to drive the 14 hours home, possibly overnight so Nathanael can sleep through most of the trip. If we choose to do this, we will also need God's perfect timing for travel, the helpers (my parents have volunteered, and can probably split the trip with Brad), and safe, clean places to stop for short breaks on the way.

So here we are, probably still a year or two away from Nathanael being a healthy little boy. This is a longer journey than I think I had anticipated, and it is wearing on us, so we appreciate your prayers and words of encouragement. Thank you for standing with us!

Bree

Update from Brad

2010-05-07T03:10:00.000-07:00

I just received an encouraging call from Bree. Nathanael’s last transfusion was on Saturday and his blood counts have continued to hold in the normal range. His blood still tests positive for the antibodies that were chewing up his platelets and hemoglobin like candy last week but the rate at which it’s doing so has dropped dramatically. So, they’ve called Angel Flight to schedule a flight back to McKinney for late next week. Please pray nothing goes wrong between now and then. This thing is so unpredictable. Any change in his condition for the worse would cause them to cancel the flight. Please pray for someone to be available/willing to sit with Jamison on Sunday morning. Two weeks ago he got sick, probably on Sunday (symptoms started Tuesday night/Wednesday morning) and we can't risk him sharing his germs with others, or catching something new just before Bree and Nathanael are home again.

Planning to go home again (by Bree)

2010-05-07T02:52:00.000-07:00

Good news! Nathanael's hemolysis seems to be slowing down (which means that his body is "chewing up" his red blood cells more slowly than before) so the doctors have given the green light to making plans to go home late next week! It has now been almost a week since his last transfusion of packed red blood cells, which is very good. Of course, we will have another blood test on Saturday, as the nurses and I are not comfortable waiting from Thursday to Monday without knowing how his numbers look. I still expect to have another transfusion before we leave town, but his hemoglobin was still over 11 yesterday, which is great. So while we are enjoying the company of friends here, we very much miss Daddy and Jamison, and are anxious to get back home. On a bright note we will get to see my parents this weekend for Mother's Day.

It's funny, because even though I miss my friends at home, my parents have been able to spend more time with Nathanael than any of their grandkids, and have been able to enjoy more of these early months of his life with me. We have also made lots of new friends at the hospital whose days have been brightened by my little boy's sweet smile and cheerful disposition. In thinking of this the other day I was reminded how helpful it is to count my blessings.

So please keep praying for Nathanael, Jamison, Brad and I, for others preparing for or recovering from their transplants, and for God to use these situations for His glory. You and your prayers are such a blessing to us!

"Happy Mother's Day Mommy!"

2010-05-02T06:18:00.000-07:00

Enjoy!

Thanks Sara & Craig!

Happier Day in Cincinnati...Feeling Sick in McKinney

2010-04-30T15:53:00.000-07:00

Here are a few pics of our happy little guy from this evening. He sat up and played for quite awile while talking on skype. Note that the toy of choice here is an emesis basin--only in a hospital!

We hope to get out of here on Sunday or Monday, and will spend some time at the home of some friends while the doctors here continue to monitor Nathanael's condition. He does need more red blood cells tonight, so please pray that he would not have a bad reaction to the cells.

Jamison and Brad are still feeling sick. I guess it's better that we're apart for now.

Please pray for two of our friends who are in the transplant process as well: L. B. and J. M. Both need protection from illness, rest, and to respond appropriately to their medications. May the Lord continue to bless them, just as He blesses so many others through them.

Here's to a restful, quiet weekend for everyone!

Bree

"It's not fair..." and that's a good thing!

2010-04-28T12:34:00.000-07:00

From Bree, in the hospital in Cincinnati:

Thanks for the continued prayers! And thank you for the food, supplies, and borrowed clothes as well! Nathanael is doing MUCH better than he was just a day ago, and that is reflected in both his lab values and his behavior. He is in general much happier than he was. However, he is still on very high doses of steriods, which makes him agitated, and makes sleep difficult. I had just obtained permission to give him some Benadryl this afternoon because he had not yet taken a nap, but by the time I got back from heating up my lunch he had finally conked out and was sleeping soundly. Of course, that's after I covered his crib like a bird cage and left the room. When it comes to fighting sleep he is one determined little boy!

It's funny, but in a way I feel at home here. This place has been a significant part of our lives (well, my life and Nathanael's anyway) for the past seven months, and in some ways we feel pretty comfortable here. Strange, I know. But hopefully most of you will never have to understand.

One of the things I like about being here (or even at Children's Dallas) is the support I feel from staff members and other families. From the social workers and child life specialists, to the nurse-practitioners and other patient-care staff, almost everyone is supportive and encouraging in some way. In fact I told our lactation nurse yesterday that I appreciated her role as my cheerleader through some of the most difficult days. Even those close to the transplant process admit that they have a hard time understanding what it must be like to go through, but even the sensitivity displayed by that admission is helpful.

Two things are especially challenging for me right now: (1) I miss Jamison like crazy, and (2) I am heartbroken over how difficult this process has been for Brad. Though he is surrounded by loving friends and family he is still far from Nathanael and I, and can't be here to see us or help with the day-to-day care. He is much more involved in the financial and logistical details of this treatment and its impact on our family, and is aware of those costs (many of which are unknown to me). He is also playing the role of single-father to Jamison again, and I know that his respect for those who deal with this type of family situation long-term has grown tremendously through our experience.

Part of the challenge right now is to balance the needs of our boys with our responsibility to protect them. Our doctors have been very clear with us that the biggest threat to Nathanael's health is other children, so when our boys are together we need to keep Jamison pretty sheltered. Though it looks overprotective to those around us, here are the rules we have worked out in conjunction with both teams of doctors:

Jamison and Nathanael should have minimal physical contact with each other. (I allow Jamison to touch and count Nathanael's toes, but I make sure his hands are clean, and still wipe Nathanael's toes afterwards as well.)

We can have healthy adults in our home, but may not have kids over.

Jamison can play with other healthy stay-at-home kids in their homes, and should change his clothes when he gets home. (We have been advised that he should not be around kids who go to school or daycare, as that increases the likelihood of his getting sick.) Our doctor in Dallas specifically mentioned that Jamison should avoid Sunday School, for at least as long as Nathanael is on steroids, which suppress his (less than 10% of normal) immune system.

We should avoid public places as much as possible, including parks (we are grateful to have a great swingset on loan from friends in our backyard, so we can play there, as long as I keep Nathanael in the shade, as exposure to sun is dangerous for him), stores, the library.

One might ask, "Is this fair to Jamison?" and the answer, of course, is "no"...but then again my dad used to tell me all the time that life isn't fair. I didn't like that answer then, but now I'm convinced that it's an important fact of life. As a Christian I can appreciate not only that life, indeed, is not fair, but that I'm thankful that it's not. If we were to truly experience what we deserve (i.e. what is "fair") we would be apart from God - and all the gifts He so graciously gives - all the time. What we have "earned" with our rejection of Him and His ways is condemnation, and instead what He offers us is forgiveness and grace. So I have to remind myself on a regular basis that what is "fair" is not really what I want.

Our perception of fairness is another problem altogether. It is easy to look around and desire what we think someone else has - or what they actually have - instead of what we have, or where we are in life. However, if we believe that God created the whole universe, created us, and loves us, how can we complain that the life He has given us is not good enough? "Should the thing that was created say to the one who created it, “Why have you made me like this?” When a potter makes jars out of clay, doesn’t he have a right to use the same lump of clay to make one jar for decoration and another to throw garbage into?" (Romans 9:20b-21)

So we will continue to adapt our family life to fit the guidelines given to us by our medical teams, to protect the physical health and safety of our boys, and to provide for their emotional, social and spiritual growth as well. Please do pray for us in this, as it will require great creativity and perseverance. It could be another year or more before Nathanael's 10% of an immune system is up to 100%, and we will need wisdom for every step of the way.

It has been a long day, that dose of Benadryl we gave Nathanael about an hour ago has finally kicked in, and it's time for me to get some sleep...good night!

Back to Cincinnati - It was a short visit at home

2010-04-26T12:44:00.000-07:00

From Brad:

Well, it was nice having Bree and Nathanael home for a couple of weeks before they had to go back to Cincinnati for who knows how long. If you sense some frustration, you have your finger on the pulse of our family.

It all started, literally, two days after Bree and Nathanael and Jamison got off a plane at the Collin County Regional Airport in McKinney on April 12th. We went down to Children's Medical Center of Dallas to get acquainted with the doctors and the nurses that would be managing Nathanael's care now that they were home. As a matter of routine, they drew blood for lab work in the morning and by the afternoon, a nurse handed me a printout with the results. Most of the numbers looked very good except for one, his platelets.

Platelets are what your body uses to clot a bleed. The number should be above 130,000. Nathanael's were 66,000. They were around that amount when he was born. They got below 10,000, I think, in the midst of his chemotherapy. Believe me, you don't even want to get a paper cut with platelets below 10,000. Since his day 100 labs (100 days after the transplant on Nov. 23) his platelets hadn't been below 150,000. So, 66 (which is how it reads on the printout) surprised us and I pointed it out to the nurse.

The medical team in Dallas consulted with the medical team in Cincinnati and labs were drawn again the next day. This time his platelets had dropped to 14,000. The next Monday they were still in the teens and his hemoglobin was low. Hemoglobin is what your body uses to transport oxygen from your lungs to wherever else it needs to go. His liver numbers were a little funny and his white blood count was through the roof, higher than it had ever been. The decision was made by both medical teams to bring Nathanael back to Cincinnati to draw labs and for observation.

Towards the end of the second week, things were looking up. His low numbers were rising and his high numbers were coming down, thanks to a drug that I'll talk about in a little bit, and it appeared as if the Cincinnati visit wouldn't last any longer than a week.

On Sunday morning, April 25th, Bree and Nathanael took off from McKinney in a plane the size of my foot. The past two times they've traveled, it was in one hop. This time it was three legs using three different planes, the second of which was built in 1958.

On Sunday evening around 5:00, I received a text from the pilot that Bree's phone had died and that Nathanael had vomited and his color was yellow, including the whites of his eyes. The plane, which was headed for the Blue Ash airport northeast of Cincinnati diverted to the city's municipal airfield where it was met by an ambulance and off to the hospital they went.

On my end it was a little nerve wracking. I was using a website to track the flight and for a little bit, the flight disappeared. All I knew was what I'd received from the pilot and so I called the hospital's main number. After saying that I was looking for my son who had been transported from Dallas, the woman on the other end of the line said, "Mr. Banks." It was comforting to know that the hospital was aware and that they were getting things in motion to provide the needed help.

That night we learned that Nathanael is dealing with Autoimmune Hemolytic Anemia. His body views his platelets and red blood cells as an invading enemy. Untreated, his red blood cells would be whittled down to nothing. They had told us in Dallas that he was dealing with some kind of antibody problem but we hadn't heard the name for it yet.

Apparently, it is not uncommon in bone marrow transplant patients, particularly transplant patients who have Wiskott Aldrich Syndrome, which is what Nathanael has. What's left of his old bone marrow is fighting his new bone marrow. It's like there's a UFC match in his body and the platelets and red blood cells are the casualties. What the doctors need to do is manage the consequences and help the new bone marrow win the fight. He can receive transfusions for when the numbers get too low. The procedure for that is straightforward but his condition makes it hard to find blood that matches. It takes about 12 hours to get blood that he can have. He also receives doses of Ritoxin which apparently kills the cells that form the antibodies against his new marrow.

The good news is that there's every reason to believe the new marrow will win this little fight. It's just that it could take weeks or even months. Priority #1 is to stabilize Nathanael so that his hemoglobin and platelets are at a safe level. Priority #2 is to arrive at a place where the doctors are satisfied that the treatment regimen is working. Once that happens, he can be transferred back to Dallas where the treatment can be continued. Again, this could take weeks or even longer.

So that's where we are today in this odyssey that began with Nathanael's birth on August 19th. Please pray that those two priorities will be quickly achieved and that Jamison somehow is able to understand why Mommy had to go away so soon after coming home.

In Christ
Brad

Home for 2 weeks...now going back for a short visit

2010-04-24T22:02:00.000-07:00

It's been good to be home - I have even seen a few friends - but now Nathanael and I are headed back to Cincinnati for a week of testing and check-ups. With his recent diagnosis of platelet and red blood cell auto-antibodies he needs to be seen by the doctors who have seen him every week for the past six months to make sure that nothing is missed. While his numbers (platelets, red blood cells, hemoglobin) seem to be normalizing (i.e. his retoxin treatments are helping) I still have some concerns about his stool and color (he skin has looked more yellowish than usual, and his bilirubin has been high). Since things can go awry so quickly with little ones, I'm a little anxious to have his doctors in Cincinnati run their own tests and do their own assessment of him.

Overall though we're adjusting pretty well to life at home. I still need to work on fitting a few more things into everyday life. We need to get Nathanael eating a variety of solid foods, not just squash and sweet potatoes, I need to get Jamison outside to play every day, but that means either leaving Nathanael in his bed and using a monitor outside, or setting up a way to keep him completely shaded from the sun (he likes to pull blankets off of his stroller!). Don't get me wrong, I'm NOT complaining! I'm so thankful to all be together, and I enjoy spending the days with both of my little boys.

Please keep praying for strength for Brad and I. The road ahead is still long. Nathanael has less than 10% of an immune system right now, and we could be living with LOTS of restrictions for all of us for another year or more. Again, I'm not complaining, as we are voluntarily submitting ourselves to the recommendations of our doctors...we just need to keep trusting God as we follow the best advice that they have to offer while finding solutions that work for our family.

Thank you for your prayers and support!
Bree

HOME home at last!

2010-04-18T16:14:00.000-07:00

We're ALL HOME TOGETHER now!!! Still unpacking, getting used to new routines, new medical providers, etc., but thankful to be here. I hope to post some "visit guidelines" soon, as I'd love to have some visitors since we're not getting out much.

Please pray for Nathanael, as his platelets are low, and he's now on a new medication that will slow his recovery a little. He's also on steroids again...ugh.

Pray that Jamison would stay well, and would be free of neuroses about hand-washing. :)

Pray for Brad and I: for sanity, organization, good health, wisdom about medical decisions (which central line to remove, whether or not to put in a new NG tube for meds - we've been without it for several days now) and that we would continue to trust God and teach our boys to do the same.

More later...but keep on praying!

CVC Crises Averted

2010-04-01T07:29:00.000-07:00

If you read the earlier post you might have noticed that it referred to a single event, while this title uses the plural. That's NOT a typo. His central line was repaired early this morning, and then the repair failed to hold, so a second repair was needed. ARGH!

Thank you for your prayers. All went well, and his line has been repaired. Hopefully there will not be another infection, this repair will hold, and they'll get us out of the hospital soon.

Praise God with us for protecting our little boy, please pray for continued protection for all of us (Brad and Jamison are at the zoo today with friends), and pray that we would respond to all these circumstances in a way that brings glory too God.

Oh, and thanks to ALL of you for standing with us in prayer, helping in other ways, etc. You are all gifts from God to us, as we could most certainly not handle this without you!

CVC Emergency

2010-04-01T02:36:00.000-07:00

Please pray for Nathanael: one of his central lines popped like a balloon just now (5:00am) while the nurse was trying to draw morning labs, and we're waiting for someone to come repair it. We really don't need another line infection (this is the other side). UGH!

Oh, and we're both exhausted and need sleep.

I just want to go home!

(CVC stands for "central venous catheter")

Please pray (from Brad)

2010-03-30T19:27:00.000-07:00

Sunday night, Nathanael developed a full body rash that the doctor today diagnosed as graft v. host disease. For some reason, either related to his central line infection or just because, his body has started to reject the transplant.

As I’ve had it explained to me, GVH (graft v. host) comes in two forms, acute and chronic. Chronic is lifelong and therefore must be controlled over the course of one’s lifetime, like someone who’s had an organ transplant and has to take medication their whole life so their body doesn’t reject it. Acute can be controlled and managed until such a time that it isn’t a factor anymore. I guess as long as it doesn’t become chronic, then they can treat it until his immune system recovers to where it won’t be a risk anymore. Thankfully, Nathanael is dealing with acute GVH right now.

Bree and Nathanael are in the hospital as they have been for the past ten days. Hopefully, they can come back to the apartment in a day or two but they will be in Cincinnati for an indefinite amount of time.

This is obviously difficult to deal with. We were making plans for everyone to come home and now it will just be Jamison and me. Hopefully, it will just be a matter of weeks before they release Nathanael to Texas and not longer.

God is in control, period, and He is always good.

UPDATE: The GVH rash is beginning to clear, but it looks like Nathanael will still be in the hospital through Easter Sunday. Please continue to pray!

Holding Pattern

2010-03-27T11:49:00.000-07:00

From Bree (still in the hospital):

So here we are, in a holding pattern. Nathanael is doing great, by all accounts, but still needs to be treated with a triple tail of antibiotics for the two bacteria that were discovered in his culture from a week ago. It looks like he'll be on those for another week or so. The good news is that the doctors will PROBABLY let us go back to the apartment early next week, since they trust me to administer two IV antibiotics, IV fluids, one oral antibiotic, and the rest of his oral meds (given through his NG tube).

What we don't know right now is how long we'll need to stay in Cincinnati following this latest episode. We had hoped to be back in Texas already, so staying longer is a bit of a disappointment. HOWEVER we are thankful that Nathanael is doing well, we still have a place to live, Brad and Jamison are doing fine (and are visiting me each evening out in front of the hospital...I hop into the van for a brief visit/storytime and hugs). In the ideal world I think we'd all be home in time for Easter, but since it takes about two weeks to arrange a flight our guess is that the earliest we can all be home is the weekend after Easter. So Brad will most likely fly back for Easter Sunday, then come back here to take care of us, help us pack, and drive the van back.

What's funny is that even once we get back our journey is far from "over". We'll still probably need to make weekly or bi-weekly visits to the doctor for IVIG and check-ups, and we'll still maintain a somewhat limited social schedule, keeping Nathanael away from most public places for many more months. However, I am looking forward to a LITTLE bit of "normalcy" once we're back home.

Please keep us in prayer...it's really tough to keep a positive attitude and to not get discouraged. We love hearing from you, and look forward to seeing many of you soon!

Help Needed: Trusting God

2010-03-21T08:55:00.000-07:00

Here's an opportunity for us to trust God:

Brad needs to be home to preach the next several Sundays.
Nathanael is currently in the hospital, and spiked a fever again last night, so the earliest we can go home (to the apartment) is Tuesday morning.
I'd like to keep Jamison with me until we all return home together.
I don't think I can care for two little boys on my own for more than a day or so.

Based on what I've listed here, I think we need the following:

Frequent-flier miles to get Brad back and forth to Dallas.
Help for me, even if it's just a few hours each day, so I don't feel so alone and so someone can help me with housework so I don't get overwhelmed.

Of course, our Heavenly Father knows what we need...here's what I need to think
about today, from Matthew 6:31-34:

"Do not worry then, saying, 'What will we eat?' or 'What will we drink?' or 'What will we wear for clothing?' Only people who don't know God are always worrying about such things. Your Father in heaven knows that you need them. But more than anything else, put God's work first and do what He wants. Then the other things will be yours as well. So don't worry about tomorrow. It will take care of itself. Each day has enough trouble of its own." (CEV & NIV)

Oy

2010-03-20T06:25:00.000-07:00

From Brad:

So to read Bree's last post would give you every indication that we are about to head back to Texas for good. Yesterday we had a regularly scheduled appointment with a home health nurse to change Nathanael's central line dressings and caps. As Bree mentioned, it was a doozy replete with multiple vomiting episodes by Nathanael. When the appointment was over, the nurse coordinator asked Bree to bring him in just so they could be sure everything was OK. They went in at 1:00 and were released to come home at around 8:00.

Bree got home and I, trying to be the good husband as well as finding an excuse to do what I wanted, left to procure some ice cream for her, for her I said. I got home. Bree had changed into her pj's and everything was pointing towards a relaxing evening where we'd watch a little basketball and then get some much needed sleep.

In preparation for giving Nathanael his evening medications, Bree took his temperature. For the first time in his life, Nathanael had a fever. The thermometer read 38.5 Celsius. We checked it again and it was 38.3. He had a fever. Now, for any other child, this isn't that big of a deal. Give some Tylenol, stay on top of it. For a child who's recently had a bone marrow transplant, it's cause to call the doctor and go into the hospital. So, at 10:00 at night, Bree packed up Nathanael and took him in and that is where they are right now. He's receiving antibiotics as well as a transfusion of packed red cells because his hemoglobin is low which isn't as big of a deal as it might sound.

I don't have any idea when they might be released. I also have no idea how this will impact their coming home. If I had to guess, I'd say it postpones it a week but who knows. The good news is that he hasn't registered a fever in the hospital so maybe he started to come down with something and his immune system dealt with it. That would end up being great news. Please pray. We love Cincinnati but we desperately want to get back to Texas.

Pray for us...it could be a long week!

2010-03-19T18:06:00.000-07:00

Please pray for all of us this week. Here's the latest:

The boys and I hope to depart Cincinnati on Thursday via Angel Flight/Grace Flight. (Our plan is for Brad to clean up the apartment, get some sleep, and depart on Friday in the minivan.)

That means we need to return LOTS of items to people on Thursday, and may need some help late next week with cleaning, etc. in the apartment.
That also means that we will need a ride home sometime on Thursday (from the McKinney airport - preferably in a car that doesn't transport pets or kids, just to minimize risk),
I will probably need help (a grocery run, as I won't be able to leave the boys to get to the store, and possibly some freezer space to borrow - about a cubic foot or so...).
I may need help on Friday while taking care of two little boys by myself in a home I haven't seen in six months. It'll feel like a new place!
Once Brad arrives I will probably need help unpacking.

Oh, but if Nathanael gets sick we may NOT get to go home next week. He and I spent the day in the hospital today after the home health nurse who came today for his lab draws thought he was breathing too fast and his heart rate was a bit elevated (tachycardia is the technical name - which comes from the Greek word tachos, which means "fast" and cardia which means "heart" - Brad thought you might want to know...). So we went in, had lots of tests done, got a dose of rocephin (broad-spectrum antibiotic) just in case there's something "brewing" and we were dismissed around 7:45pm. That was after a home health visit that lasted from 11:00am to 1:00pm and included LOTS of crying during a dressing change procedure that seemed to go too slowly...I'm still learning.

Pray for Jamison. He woke up not feeling well today, and we're praying that he is well, but are trying carefully to maintain as much distance as possible between the boys. That's a bit of a challenge, but it could be harder for Brad and I not to pick up something if Jamison has it. Pray that we would all get the rest we need to stay healthy.

Pray for Brad and I, that we would be carefully watchful this weekend. We need to watch Nathanael very closely, so that if anything changes we'll call the doctor on call, and then a decision will be made about whether or not we need to go to the Emergency Department for evaluation. Pray that we don't have to go there!

Most of all, pray for us to TRUST God in the midst of this time of change and waiting. We want to have attitudes that are pleasing to Him, but that's sure not easy in times of stress and sleep-deprivation. We also want this to be used for His glory...though we often have no idea how that's possible. We need to trust and have faith, and we pray that others would join us in that as well.

So after a long day I am thankful for a husband who went to UDF to get me some chocolate/marshmallow ice cream. :)

Hope you enjoy the pictures! Jamison LOVES his new "I Dress Me" chair - a generous gift from a wonderful friend. The last one shows him "helping" Pop Pop George fix the bathtub last weekend. :)

Scroll down the page...

2010-03-14T19:06:00.001-07:00

...to read my "new" post. Even though I just wrote it the other day, I started to write it before Brad posted the top entry, so it was placed farther down the page. I haven't bothered to figure out how to change the date yet (and that's not high on my list of priorities!).

Thanks!
;) Bree

Joy Inexpressible (by Brad)

2010-02-20T18:21:00.000-08:00

Good evening from Cincinnati, Ohio. I know that many of you have been curious as to what it was like when we finally got to see each other after 3 and a half months apart. It was good. So, how about all that snow?

But seriously...it is funny to me that I can say that about the snow and people from both Dallas and Cincinnati can relate. It's like the stuff followed us here. Bree will post the whole thing from her point of view but I thought that since I was the first who had free time, I thought I'd try and convey what it was like more for Jamison than for me, or at least what I saw Jamison experience.

The snow thing is goofy. The day before we left to drive the 14 hours from McKinney to Cincinnati, more than a foot of snow landed in North Texas. I couldn't believe it. It started snowing well before daybreak and didn't stop for over 24 hours. For Dallasites, that's not a snowstorm, that's the apocalypse. I wondered for a second if God was trying to tell me something about our impending trip. Leave it to me to make a once-every-30 years snowstorm about me. Two days after we got here, Cincinnati was inundated with 9 inches of its own.

Driving for 14 hours with a 3 year old is not a one day trip. We broke it into two days, stopping halfway in Memphis. Hats off to Paul Rasmussen who not only shared in the driving but patiently endured Jamison's constant queries of what was inside each and every semi-trailer that we passed on the highway.

I didn't sleep much on the overnight. The bed in the hotel was a little high off the ground and knowing my boy is an aggressive sleeper I didn't want him falling off so I basically stood vigil all night. It was a good thing I did. Somewhere around 3:00 AM, he had turned around completely and rolled several times reaching the foot of the bed before I picked him up and carried him back to the head of the bed.

All of that is to say that on Saturday, I was exhausted and by the time we were crossing the Ohio River, I was operating solely on adrenaline. After dropping Paul off with Craig Knisley, who with his wife Niki, attended Faith Bible while in seminary, we drove to the apartment.

I honestly have to say that emotionally, it didn't hit me until those last 10 minutes or so. I'd held our departure loosely knowing that any of a number of factors could delay our leaving McKinney. I did my best to focus on the task at hand while we drove across Texas, Arkansas, Tennessee, and Kentucky. However, as we drove those last few miles, it all hit me at once. I got very tired and nervous only because I didn't know how Jamison would handle seeing his mom after all these weeks. I had flashbacks of what it had been like to leave at the end of October, to drive out of the parking garage, and strangely, I got sick to my stomach.

As we drove up, I asked him if he remembered the apartment complex. He said yes. We pulled into the parking spot and I asked him to tell me which building it was and he got it right and when I looked at him, I noticed a big grin on his face. We walked into the building and, truthfully, the smile never left. I asked him what apartment it was and he remembered. When we were here in October, we'd used that hallway to do a little running and so it didn't surprise me when he started to run. We stopped at the door and I got ready to open it but Bree took care of that. It flung open and she scooped him up into her arms. He smiled and giggled and didn't seem to care that mom had tears in her eyes. He just kept talking and talking and explored our small apartment. He found his bed and the stuffed alligator that we'd left here and did nothing but talk to his mommy. I was able to hold it together until I saw Nathanael. My youngest son had just changed so much since I last saw him and Skype for all it's worth didn't do those changes justice.

To say that it feels good to be together again is to surrender to the fact that the English language doesn't have the words but really it's just one more chapter closed in this ongoing saga that would have made some great reality television. I've discovered that Nathanael's health regimen is intense as far as what has to be done when as well as the caution that needs to be exercised to protect him as much as possible from germs while his immune system continues to reboot from the transplant. We should know in a week or so what the remainder of our time here in Cincinnati looks like. Day 100 is March 3rd. That's supposed to mark the end of the critical window. For now, I'll continue to hold it all loosely. Jamison has a few things that he says often. He asks if we in fact all together again (he doesn't say "in fact"). He asks mommy if she's happy and he asks when it is that we will go home to Texas with mommy and Nathanael. Pray Lord that it will be soon.

Together! (And then apart again...)

2010-02-19T11:58:00.000-08:00

Sorry it's been so long since our last post. As you can guess, we've been quite busy! (I started this post on February 19, and it's now March 13...)

Brad and Jamison have been working on the concepts of "apart" and "together", so it has been fun to talk about how we are all together again. He has repeatedly asked me, "Are you happy, Mommy?" to which I reply, "I am SO HAPPY that we're all together!" That makes him smile, and I just LOVE to see him smile.

Here's a picture of "Dr. Jamison" getting ready to examine a patient. :) He used his plastic animals to look in my eyes and ears after listening to my heart and lungs...what fun!

Here's Nathanael napping in one of his favorite places...and Brad wonders why it's so hard to get things done... The next picture shows Nathanael after eating some pureed peas...yummy!

Well, we were together for about two weeks before Brad headed back to Texas for a week. It was fun for all of us to be reunited, and yet a challenge to meet all the needs of both boys at the same time, as there are so many needs right now. Of course Nathanael still needs lots of medical care, and has been a little more clingy lately (sometimes he'll cry if anyone else but me holds him), and Jamison needs a lot of attention. It's not easy to balance it all.

The one of Jamison in his car seat was his "nap" after a long day at the hospital. Since Brad left for Texas on March 4, I took BOTH boys with me to the hospital on March 5, and we spent most of the day there. I was so glad that a friend could drive us there, and the hospital van and driver were available to bring us home in the afternoon. After an early morning, a picnic in the hospital room, a few videos and some books, Jamison was worn out. Both boys fell asleep in their carseats on the way home, and the driver offered to carry Jamison (still strapped in, as you can see) into the apartment. :) I got a few minutes to rest while both boys slept, and that was great!

The last picture shows Nathanael, happy with himself after he grabbed a pile of napkins off the countertop. All I did was go into the kitchen to wash my hands, and I turned around to find this! (In the background you can see the medicine tray on the kitchen counter.) Love that mischevious smile!

I tried to include a video of Jamison singing...not sure if it will work. Ugh! Anyway, if you can see/hear it, you'll hear him singing about everything in the room. Brad says it reminds him of that scene in "Anchorman" where Steve Carrell's character starts to say things like, "I love lamp. I love toaster." It's pretty cute and creative. Enjoy!

We're hoping/planning to come HOME HOME around March 25. Please pray for no illness or hospitalizations between now and then so we can come home! Jamison prayed last night that Mommy wouldn't have to go back to the hospital. It breaks my heart, but I'm praying that he'll learn and grow a lot through this experience.