Sorry for the Delay!

I am sorry we haven't posted sooner!  I am sure that most people who follow this blog already know, but we never made it official.  Jackson's scans were all clear!  The spot that was seen in the previous MRIs was gone, and all is well!

Dr. Granger said that at our next clinic visit in a month or 2, we should talk about ending our scan schedule.  Talk about anxiety!  I told Dr. Granger that she would have to sell that one to Kayla.

The boys are doing great, and we are all excited for Jackson's Make-a-Wish trip in September.  They are sending us to Disney World, and the boys can't wait!  Kayla's mom (Kathie) and Aunt Degi are coming with us, which is all too appropriate since they were KEY in helping us get through NY for Jackson's surgery and Austin's diabetes diagnosis.  We still can't thank you both enough.

I guess I haven't mentioned anything about my recent joint pains, so here goes.  A few months ago, I hurt my back (which happens every year or so).  I was in lots of pain for two weeks, and then suddenly began having pain in my joints (knees, shoulder, ankles, hip, wrists and fingers.  I went to several doctors and received minimal help.  Finally, after some reading, I asked my primary doctor to run a Rheumatoid Factor test.  It came back slightly elevated and I was referred to a Rheumatologist.  I was told I would have to wait months for a new patient appointment, and I had called almost every office on my health insurance plan.  Finally, I widened my criteria and called an office or two in Dallas.  I found one that had an appointment a few days later, and they ran a bunch of tests and determined I probably have Psoriatic Arthritis (an autoimmune disease).  I have tried several frontline medications (NSAIDS) with no help.  Now I am on methotrexate which will take a few months before I can tell if it is helping.  It is a chemo agent, that when given in low doses can be very helpful in suppressing the immune system and reducing symptoms.  I hope it works!  Well sort of.  The downside is that it makes me very tired and VERY sick to my stomach.  I had a really bad flare up in my left arm about a week or so ago, and took a round of steroids which helped a lot.  Unfortunately, I think they wore off today, because my back is killing me again, and my knee pain is back.  We will see what happens.

Kayla is excited and nervous about her new job.  She is starting in a couple weeks at the boys school (Children's University) as the school nurse.  The scrubs she picked out, while cute, are not the type of outfit that I had imagined...It will be so great that she will be able to be close to the boys and help manage Austin's blood sugar so well.

We are really lucky to have each other and such a wonderful supporting group of family and friends.  It has been just over two years since our world was turned upside down, but it really has opened our eyes to what is truly important.  Right now is all we are promised.  While we do make plans for the future, we enjoy each moment as it comes and take nothing for granted.

-Joe

Still Waiting

I am officially annoyed. Was geared up for a call from MSKCC today about Jacksons scans and their advice. I called and they won't be able to look at the test results until tomorrow. So, here's for another nerwracking, nailbiting 24 hours!


jb

Scan Results

Joe here.

We finally talked to the Doctor about Jackson's scans on Friday afternoon.  We had an appointment to get the results on Friday morning, but they didn't have them ready, so we left and they would call us when it came in.  This seemed very strange to me, since, normally when the Radiologist report isn't in yet, the Dr. calls down and has them look at it and takes notes over the phone, and passed the info on to us.  This did not happen.

We wait and wait and many hours later, I call, and am told the computers are going slow, the appointment nurse will look up the records and call us back in a few minutes.  About 20 minutes later, the Oncologist calls me directly and tells me that the MIBG was fine, but that one of the MRIs shows something in the same area of Jackson's original tumor that was not on the last scan.  

She wants to wait 3 months and rescan, instead of the 6 months that we would have waited, had there been no news.  I said okay over the phone, but did not really have a chance to think of any questions, as I was in a bit of a state of shock. 

We thought about it for a bit, and I called Radiology and they got me the CDs with the info including the new scans, and all older scans, and I went to pick them up Friday around 4pm.  I overnighted them to MSKCC (Memorial Sloan Kettering Cancer) Center) in NYC, and after talking to Sarah in Dr. L's office, was assured that they would review the scans on Tuesday (April 20) and let us know their opinion.  

The thought of waiting 3 months is very scary.  We are very nervous to hear what they think.  The onc here is not even sure the area is large enough to biopsy, but I am a little reassured that the MIBG didn't show any hot spots.  Unfortunately, they are not always 100% accurate, as some kids are MIBG avid and then later on are not MIBG avid.  

Also, we are waiting to hear the HMA/VMA numbers which could indicate NB activity if the numbers are raised.  We should know tomorrow or Tuesday I hope.

Needless to say, we are very concerned, and scared and are looking for answers.  We are considering what to do about building the new house we have been planning for so long.  If this is a relapse, I don't think we will be devoting so many resources (time, energy, and money) into the project right now.  Time will tell.

-Joe 

Spring has Sprung

It has been beautiful outside latley and we have been taking advantage of it. We have been playing out in our backyard alot, going to parks, playing outside at the Children's Museum and anything else we can come up with to keep busy.
Joe had the day off, so we took the boys to ride on the Forest Park Miniture Railroad. The ride is a little over 30 minutes and takes you through Trinity Park. Once we were done with the ride, the boys were ready for lunch (they are ALWAYS ready to eat). We went to a nearby park and had a picnic and played for a while. I guess we played pretty hard because when we got home we all had a nap, which is rare for the boys to do these days.

Austin started swim lessons last week and is loving it! The first lesson was not so great, he was crying and wanted me to sit next to the pool. Luckily, I found out that promising him a piece of gum after each succesful practice was all the motivation he needed to become the perfect swim student.

This fall I will officially become a full time working mommy, I will be working up at Children's University as the school nurse! Perfect job for me since I really need to be up there with Austin all of the time to take care of his diabetes stuff. Austin and Jackson will both start going 5 days a week, I am not sure how they will react to the new schedule but I guess we have plenty of time to prepare them for it.

I take Jackson to the hospital tomorrow for his MIBG injection. Thursday morning we go in for scans which is always an all day thing. We will probably get to the hospital around 8am and we usually don't leave until 5 or 6pm. Friday we go talk to the oncologist about the results of the scans and I will post here after we get the good news :)

I hope everyone is having a wonderful week...here are some recent pics....

Sweet boy

Playing in our backyard

Austin at swim lessons

Austin and Alexis having fun

Riding on the train

Our Saturday....

We woke up bright and early this morning and headed out to Fort Worth for the Neuroblastoma Walk. So far, $45,000.00 was raised and they still have donations coming in! The boys had a blast running around and playing, there were so many wonderful people there and the weather was perfect.

Afterwards, we came home to relax and try to get naps.....which is a joke around our house. The boys have not taken naps in so long, the only thing that keeps me going through the day is Diet Coke, I miss nap time!

After our non-nap time, we went up to Lake Arlington Baptist Church for their egg hunt and carnival. They had the easter bunny drop the eggs from a helicopter. We got there right as the helicopter was about to land, but by the time we made it to the field, all of the eggs were taken. Luckily, there were a few people handing out eggs to the little kids, so the boys each got about 6 eggs and they were happy.

We are now at home resting....I am looking forward to 7pm when I will be leaving the house for some mommy time :)

Hope everyone has a wonderful, happy, fun Easter!

Here are some pics from todays events.....

With Mammaw and Pappaw at the NB walk

Jackson was so excited to see himself on his poster

Everyone walking

Me and the boys after the egg hunt

And the Hits Just Keep Rolling!

Good morning everyone!

Austin and Jackson were SOOO excited to see mommy come home Thursday.  We all had a lot of fun and there were lots of hugs and kisses.

Jackson got sick to his stomach one of the nights while she was gone, and I felt mildly pukey yesterday.  I had no lunch or dinner yesterday b/c I felt that food would make me sick.  Now I know why.  I was sick.  Austin was up all night being sick.  It really freaks him out when he throws up.  He doesn't know what is going on or why.  Poor sweet boy(d).

Also very thankful that my cousins darling daughter Paige is doing better.  They live in Florida and Paige went to the E.R. the other night with extreme stomach pain.  She endured barium beverage, sticks, and 2 CT scans.  Looks like it was not apendicitis, and the pain is gone so she is back at home now.  YAY!

Our thoughs are with all of the families who have given all the last few weeks (and forever) and have lost a child.  Please pray for them as they endure what must surely be the hardest challenge a parent can ever face.

www.caringbridge.org/fl/hannabannana
www.caringbridge.org/visit/jessicakuebler
https://www.carepages.com/carepages/Sydneymarie
http://www.caringbridge.org/visit/leslyfoster
http://teamsam.com/


-Joe

While Mommy's Away, The Boyd Boys Will Play

Good Morning World!

The Boyd Boys are having a great morning.  Kayla and her mom went to L.A. yesterday morning and are having fun.  They saw The Mentalist (television show) taping on the Santa Monica pier yesterday, are going to Jimmy Kimmel tonight, and have backstage and greenroom type passes to see the Tonight Show tomorrow.  A much needed break for Kayla, and a great way to spend some time with Kathie.  Have fun guys, cause we are!

Austin and Jackson miss mommy, but we are doing our best to not worry about it too much.  We went and saw my mom's new place yesterday (very nice!) and we are about to leave for the FW Museum of Science and History in a little while.

Austin and Jackson say the funniest things!  I think I am going to start a FB group, and only post the funnies ones there.  Here is a previw :

Austin : I want to give you a hug Jackson.

Jackson : I don't want a hug.

Austin : (gives Jackson a hug anyway)

Jackson : NO AUSTIN!

Austin : It's too late.  It's already in your heart...

Nice.

Who wants some Pancakes??!!

We will be at the Grand Prairie location tomorrow morning, come see us!!


Eat Pancakes and Help Children With Cancer

Does it get any better than this?


Who: A New Year of Hope Foundation

What: Pancakes, eggs, meat, and drink included. You can even have a second helping of pancakes!
Cost: $6 per person

When: March 13 2010. Be sure to arrive between 8am and 9:30 as the breakfast food needs to be cleared out in time to make way for the lunch crowd.

Where: Applebee’s Neighborhood Grill & Bar

Grand Prairie Location off I20 and Great Southwest Parkway

Irving Location off Beltline and Hwy 183


HOPE TO SEE YOU THERE!!!

Lots Going On!

Where to begin?

We are buzzing around the house, trying to get everything ready.  Lots to do!

We are moving on March 18 (one week!!!) which has been moved up from March 31, and so we are scrambling to finalize the details.  Got the title company mortgage payoff information today, Kayla has been tirelessly packing.  Well, ok, she's pretty tired.  We found a nice place to rent while we build the new house.  Cancelling homeowners insurance, getting renter's insurance, finding a storage unit, getting movers to help with the big stuff (did I mention my back is BAD?).  Wheee!

Austin and Jackson are both getting over being sick.  Austin had focal pneumonia, Jackson probably did too.  Luckily, they are on the mend, and seem to be cranky more than anything.

I had a Hita-Scan for my gall bladder Wednesday, and they called yesterday and said the results were "abnormal".  They scheduled me for a Monday appointment, and after agonizing over it yesterday, I called this morning, and they were able to squeeze me in this morning.  Sorry to all the patients who had a real appointment.  They said that based on the test results and pain I have been in over the last couple years, I probably have Gall Bladder disease, which means it will probably have to be removed.  Going to my favorite doctor tomorrow to talk it over and see if there are any alternatives and what to expect if it has to be done.

I volunteered for a Parents as Mentors program at Cook Children's recently.  It's a new program that pairs up newly diagnosed families with those who have been there, and offer them some insight and hopefully some comfort in the weeks after such tragic news.  I haven't been called on to help yet, which is a good thing, because that means that hopefully, no one is receiving the "Welcome to the Neuroblastoma World" speech.  If I am needed, I am ready to try and help in any way I can.  They will be rolling it out to other areas of the hospital soon, and I hope to join the Diabetes group too.

Kayla and her mom are looking forward to their upcoming trip.  Theyare going to L.A. for about a week later this month.  It will be a much needed break for Kayla, who has been holding down our fort and making it look easy for the last few years.  Plus, it will be good for them to relax and bond and hopefully see some movie stars.

Having good success at work.  Lots of people still needing well built custom homes at a reasonable price in the area, so that's good.  We are building homes in 5 neighborhoods right now.  I think that's a new record!

My Grandmother Dorothy is doing great after her hip surgery, and is getting around quite well on her own, thanks to her strong will, and strong helpers (Doug, Jeanine, my sister Katherine, among others).

My mom's husband Randy is doing much better after his recent heart surgery, and is out walking every day getting good exercise and some strength back.

That's all for now.  Will post more later!

Joe

New Website for Boyd Family Updates

We have decided that it was time to move on from our CaringBridge blog and start a "normal" blog for everyday life and not just medical issues :)
You can still see our old blog at http://www.caringbridge.org/visit/jacksonboyd
Stay Tuned!