We made another quick trip to Memphis at the end of last week. Mac's counts were better. I forgot to mention that due to his low counts mid-July, we got them checked again a week later and they were lower still. So we restarted the GM-CSF shot again at the second-to-lowest dose to give his counts a boost again. We will keep it at that level for about 4-6 weeks. Dr. Reiss said this is farely common. The tapering of both medicines will take a while; since he's not on protocol, we can taper, re-introduce, taper, re-introduce as they watch his counts. The theory of course is that eventually all meds will end and the counts will stay up. That is the goal, and that is what we're praying for. Keep that BMT out of the picture!!

It's always fun to go back to St. Jude because we love the whole Hematology dept. I call it our Cheers bar - where everybody knows our name!! Mac's officially going to start school next week (yikes!) and we are enjoying our final week of vacation with family at the beach. Now that we've reached the year mark, I can't help but think about "this time last year"... Today was the day his first line was put in and tomorrow is the day he started his first ATG (horse). Hmm.... I'll take Florida instead!!

Hope you are surviving the heat and enjoying the end of vacation. I will post again after school starts and we get his labs checked again at NO Children's in mid August. Thanks for praying for that pesky bone marrow to work!

Blah.... you guessed it. All counts down. With the shot gone, we expected his ANC to go down. But all the others dropped too. I promised I wouldn't stress when I saw the results today because there seems to be a pattern that counts are lower when we do them here at NO Children's Hospital. Maybe they have a different method of counting here.... like some kind of Napoleonic Code.

So anyway, today marks a year since we got to St. Jude and got Mac's diagnosis. Those are some days I wouldn't want to go through again. Since I'm not dwelling on counts this week, I'll focus on something more positive. Raye has been organizing Team MacAttack and the St. Jude marathon. RUNNING FOR A REASON! Our goal is $40,000. Would you consider being a runner (or walker/crawler) or a donor? It is humbling for me to know that so many people out there cared about Mac & our family last year and donated to the team.... lots of family, even some strangers who knew a friend of a friend and cared enough to donate. I will admit that before we became members of "the club we don't want to be in" we never donated to St. Jude, or knew that much about it. Now we know first hand what an incredible place it is. Mac was (and still is) receiving top notch medical care and we were given housing as well as tutors to keep up his schoolwork while in Memphis. Had we needed it, shuttle services are provided. Our medical supplies and medicines are still shipped to our door. They think of everything to make a horrible situation a little less horrible. In tough economic times, I know everyone has to be thoughtful with their contributions, but I hope you give Team MacAttack consideration! We are still in the organizing process, with our old team signing up and new members joining. Our hope is for Mac to be able to walk/jog the 5K as a survivor!! (For that to happen he'll need a higher hemoglobin and a lot more platelets than he had today, but I promised not to dwell on those counts, remember?!)

Here is a link to the US News and World Report article, ranking St. Jude as #1 in Children's Cancer Hospital. (We are personally fan favorites of the non-malignant hematology department, which is also excellent, but is not as well known.)

http://health.usnews.com/best-hospitals/pediatric-rankings

The Team MacAttack page for 2010 can be found here -

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

When you register for your race of choice, make sure you register as a Hero on Team MacAttack so that your fundraising will be attributed to Team Macattack. The half marathon sells out early so make sure you register soon! We already have some donations and new runners registered! For those who are not into training, but more into socializing, the 5K is a great option. And there is always the Donate button if you can't make the race in December, but would like to contribute to our cause.

And finally, here's a link to the Team MacAttack facebook page - we will try to keep it updated with info and pictures! Thanks Raye, for all of your hard work!

http://www.facebook.com/pages/Team-MacAttack/136905153004557#!/pages/Team-MacAttack/136905153004557?v=wall

I think you just experienced a St. Jude pep rally! I hope you are all enjoying your summer and as always, thanks for praying for us and supporting St. Jude. Novenas for high counts!! I'll update again after our trip to Memphis at the end of the month.

Yay! Hooray! The report from Memphis is really good! What happened last time, we're not sure! Different labs, different days. Who knows. As Martha said, if we were to run labwork on anyone every 2 weeks, there would be ups & downs. This time, his ANC was up again, so we are ending the GM-CSF shot. Mac is very excited about that, needless to say. He's been getting this shot consistenly for 11 months. And that is my least favorite RN task... Hopefully his ANC will stay at a satisfying level and we won't have to reintroduce it. Mac's hemoglobin was 10.5 this time... the highest we've ever seen it! We've been given the OK to slowly start him back on regular exercise and strengthening of his muscles. We're getting closer to the "normal" levels, although his line and his platelets (104,000) keep him from playing contact sports in the near future.

Thanks for all the prayers! If you feel like this roller coaster is giving you whiplash, I agree. It's constantly moving, plunging, changing. I'm really ready to coast to the exit now. But this last year has taught me many things, and at the top of the list is to enjoy the ups because no one knows what's looming around the next curve. We'll check his counts again here in 2 weeks and then back to Memphis in 2 more.

10.5!!! Come on 11!! Come on platelets. Hang in there ANC. Keep praying. Thank you for checking in with us! And have a very safe and happy 4th of July!

Mac's labs were checked at NO Children's Hospital yesterday. His Hgb was down a tiny bit, his platelets were down a bigger bit, and his ANC plunged down. Ugh. So we are continuing the shot of GM-CSF on the lowest dose until we go to Memphis in two weeks. Why do the numbers seem to plunge down, but creep up? When will they jump up?

On a different note, Mac had his 10 minutes of fame Sunday when he did a live interview on the local news as he drew a name for the St. Jude Dream Home furniture raffle. If I can get a link to the footage, I'll post it. He did a great job!

That's the roller coaster plunge for the day. I really thought we were getting out of the woods and bam! we're right back in. Oh well. Keep praying and maybe we can recover from this drop soon. Thanks!

Back from Memphis. Mac's counts were up a bit and his chemistries were fine! Creeping, creeping, creeping up... I'm ready for the counts to jump up to normal but his bone marrow seems to be taking its time! We took Peter and Annie this time; they are entertained by St. Jude. Annie especially likes the hop scotches painted on the floors in the hallways. It was a quick round trip and involved a lot of time in the van. We are decreasing the shot to the final dose, and will check labs again in 2 weeks (here). The big news of the trip was that Mac can get off of the low-bacteria diet he was on (all the kids at St. Jude are on it) and he wants to celebrate with an Icee! I learned a lot from that diet as far as bacteria goes... you may want to stay away from Chinese buffets - old rice is a Petri dish! And ice/drink machines in restaurants - who knows when those get cleaned! Yuck. I could go on & on, but then you might think I'm turning into a germaphobe....

Thanks for reading and checking in with us! More of the same. Going in the right direction. Can we speed up the process please? I would really appreciate it! Keep praying!! We are very thankful to you!

We got Mac's labs checked again at NO Children's hospital. His hemoglobin went up, the platelets went down and the ANC remained stable. As I said before, I can stress about all the tenths of points, which is why they look for TRENDS, not daily counts. And they said from the beginning that this is a slow wait & watch process. So overall things are fine, the trends are up, but as the mom, it's my duty to worry and stress about every point.

Mac, on the other hand, is not one bit stressed. He's happy to be home, happy with his friends and his gadgets, and happy his father can't make him mow the lawn...

We will continue the decrease in the shot, and go to St. Jude for a check up at the end of May. Thanks for checking in and praying. His counts are up, but still not in the "normal" range. So lets be really specific this week! Normal, normal, normal. And stay there!!

We did Mac's labs at Children's Hospital last week, and his levels dropped a tiny bit. The ANC was expected to drop, due to the decrease in the shot. The Hgb and platelets were just a bit down from the last check, so we are continuing the decrease in the shot and checking his labs again next week (here in NO).

Otherwise, we're good. Of course I stress about every tenth of a point in his levels, but this is a tricky game we're playing and I'm just going to keep following the weaning instructions and hold my breath and pray! Surely his bone marrow wants to work full force by now!!

Thanks for checking in and keeping Mac in your prayers!!!!