January was very busy for us and passed so quickly! Mac did labs at NO Children's Hospital in the middle of the month, and everything was down a bit. Then we went to Memphis at the end of the month, and counts were up a bit. The roller coaster ride continues! I get worried that everytime they're down we're going to hear the Bone Marrow Transplant enter the picture again, but so far, that hasn't happened. We have heard more than once "the bone marrow takes a long time to recover." So it's the status quo for now, as far as medicines are concerned. This is definitely a test of our patience!!

Hope you are all doing well and surviving the cold weather if you are affected. Down here, it's Carnival time! King cakes, parade plans... It's a fun time to be in New Orleans!

That's about it for now. Thanks for checking in and praying for Mac and his sluggish bone marrow!

I hope you all had a Merry Christmas!! We made our trip to Memphis earlier this week and it was quick as usual. Annie came with us and she is always entertaining to bring along. Mac's counts were good, his hemoglobin was back in the 10's and his platelets dropped to about 120,000. Feels a bit like a see saw! But relatively those are good numbers so we are still maintaining the status quo with the medicines. And thankfully we didn't encounter snow during our trip (although Mac & Annie would have loved it!)

Annie had written her letter to Santa early in December and before we mailed it to the North Pole, I read it. Under her list of presents she wanted, she asked Santa to remember the sick kids at St. Jude and bring them lots of presents too. Needless to say, our whole family has been affected by Mac's illness, but it amazes me how it touches children who find out that there are some really sick kids in this world. In fact, when we were there this time, we found out that a family from Mississippi, a Target House neighbor, was back because their little boy's cancer had returned. Ugh. There are so many other words to say, too many really, about the unfairness of it all, but "ugh" is what comes to mind. God has a plan for us all.

Otherwise it's been a relaxing vacation at home for us, and we look forward to ringing in the new year with friends and neighbors down the street, instead of in the Target House! Our new chant is "hemoglobin of 11 in '11"!!!

Here's wishing you a new year full of peace, lots of laughter and good health! I know that's what I'm wishing for!! Thank you for spending the last year and 1/2 with me, and for keeping Mac in your prayers. It's not time to stop praying yet, it never is, but I am thankful we have made it this far!

Happy New Year!!

We made our trip to Memphis for the St. Jude Marathon weekend and had a great time! At the St. Jude Heroes Pasta Dinner on Friday night, our team was awarded 5th place in fundraising with about $38,000!!! Amazing!! The teams come from all around the US!! And while we were fifth in fundraising, we were definitely first in spirit. No one else could Who Dat like Team MacAttack!!! (The picture above shows most of the team members on the stage receiving our plaque. The lady in green was the keynote speaker and the man in the suit is the president of ALSAC.)

The cold front held off and we woke up to partly cloudy skies and temperatures in the 50's. For those of us doing the 5K it was perfect. For the longer distance runners, it was almost too hot!! Today I'm just going to put a couple of pictures up, with a promise of many more to come. I didn't always have my camera ready, but between all of us, we have tons of pictures to share. So here's a picture of some of the kids on our team who ran the 5K.

Kids running for kids!!

And after the 5K, we could cheer for the 1/2 and whole marathoners. Hmm, that picture looks familiar. Same boy, same coat, a lot less puffiness, and a bigger smile!!! What a difference a year makes!

And after all the runners finished (everyone crossed the finish line in some shape or form), we gathered at Gail & Eric's house for a post race BBQ dinner Saturday night. By then the cold front had come in but casa Berntson was warm and glowing with the team members and lots of food and wine!! Thanks for opening up your home to us so we could relax and visit with old friends and meet new ones. We're very lucky to have some locals on our team! And while this year's race is over, we are already thinking about the next one. It's December 3, 2011, so mark your calendar and consider joining our team. Run for a reason. I promise you'll have fun!!! More pics soon. Stay tuned!

We had our appointment in Memphis on Monday. It was a long day for Mac but all was well. He had an MRI and EEG and a consult with Neurology because he has been on an anti-seizure medicine this whole year since his PRES seizure last September. Remember me saying that PRES was a long name, but the important part is that the "R" stands for Reversible? That was all I could absorb in my exhausted, overwhelmed, ICU-parent condition!! It means Posterior Reversible Encephalopathy Syndrome and was brought on suddenly by the cyclosporine, the steroid and a spike in his blood pressure. Those were the lowest of the low days, and thankfully Mac doesn't really remember them. He says they gave him "mind erasing drugs" and that is pretty much true!! Thank God for modern medicine! Anyway, the results were fine and we are starting a long slow taper of the Keppra.

His bloodwork was ok also. He has 150,000 platelets!! Anything above 150,000 is in the normal range, so he just needs 1 more platelet and he'll be normal!! His hemoglobin was 9.7. It needs to go up more, but he's doing well and managing his long school days just fine. So we are maitaining the status quo with the shot right now, and see where things are in a few weeks.

To wrap up the appointments Monday, he got a flu shot. We laughed because while most kids dread flu shots, to Mac, it was just one more thing, no big deal, a piece of cake. As he said, "I get a shot every night!" He's a tough guy who has endured more than most people see in a lifetime and he can still joke about it!! His is not a strength you can see, like on the football field, but an inner strength that gets him through the ordeal that is a catastrophic illness at such a young age.

Our next labs here in NO will be in early December and back to St. Jude at the end of December. Our next trip to Memphis will be for fun, however, for the marathon weekend!!! Go Team MacAttack!! We are in 4th place now and very proud!! Our fundraising is in high gear right now and thanks to all of you who have contributed to this great cause. It was Danny's dream that "no child should die in the dawn of life." I know I have written that before but if you read it slowly and really think about it, how can you not tear up a little?!!

I probably won't write before Thanksgiving, so have a good one! I am very thankful for St. Jude and for Mac's continued recovery, and for you and all of your prayers and support. That, I am sure, is what has gotten us to where we are now.

We got Mac's labs done last week and this time they were not lost in space! His results were fine. He has 130,000 platelets! Hemoglobin is steady in the 9's still. ANC was really high so we are starting the decrease in the GMCSF shot again. Let's see where this roller coaster takes us! He's doing fine with school, etc. I think he's ready for more extracurricular activities but he's remaining patient.

Here's the link to the video again:

http://www.youtube.com/watch?v=yED2GWqhGBs

Thanks for checking in and praying for us. And thanks to all of you who are supporting Team MacAttack and St. Jude! Labs again mid-November in Memphis. I'll update again then!

We will get labs drawn tomorrow here in NO so we should have results by the end of this week! Mac's been doing fine overall, and the reason for this post is to share a video with you! Raye, (team MacAttack captain, mother, attorney, part time meteorologist, and video-producer extraordinaire) has put this together for us. You've seen many of the pictures, but now they're all together in one place!

If you've already donated to our cause, thank you very much! Our team is in 7th place today, but we're kicking our fundraising into high gear!

Here's our story...

http://www.youtube.com/watch?v=yED2GWqhGBs

And thanks for finding the hero in you!!

https://waystohelp.stjude.org/sjVPortal/public/displayTeamPage.do?teamId=5253&programId=401&eventId=108867

We did another round trip last Friday. It was quick and uneventful. Mac went to the dentist for a cleaning, and as long as he has a line in, he will continue to see the St. Jude dentist. His platelets jumped up and the Hgb and ANC were stable. Hemoglobin still in the 9's. I'm really ready for it to get up and stay there!! More status quo as far as medicines go. No taper just yet.

We've made it through the first quarter of school. Mac is enjoying himself and maintaining the pace surprisingly well! His grades could be better, but we won't get into that now. All I have to do is remember this time last year and grades become very insignificant!

Hope you are all doing well and getting the awesome weather we've been having! Not too hot, not too cold, no humidity, lots of sun! Thanks for checking in. We'll do labs here in a couple of weeks. Hoping for a big jump up as always. Thanks for checking in and praying for us!