We made another round trip to Memphis at the end of last week. Mac had a small break in his central line, so we drove up earlier than we had anticipated so it could be repaired. Never a dull moment! His labs were fine, up a bit from the drops in August, but he's back on all the medicines. We'll watch the levels a while longer and hopefully they'll continue the upward trend, and then start the taper again. His hemoglobin was 9.7 and he manages to go to school and have energy. His body has adjusted to being low I guess. I know I've said this before, but when his hemoglobin gets above 11, he's gonna feel like superman!

School is going well for all. It's definitely an adjustment for Mac to be back in a classroom after a year away, but he's so glad to be back. Sue (his St. Jude teacher) had prepared us as well as CBS for this physical and mental transition. Peter is enjoying 5th grade (he said he's pretty glad to be rid of girls) and Annie is breezing through first grade. She has the benefit of being the youngest... been there, done that!

That's all to report for now. Please don't forget to go to Team MacAttack's website and support St. Jude - just click on your favorite runner. The team is huge this year!! Every time I go back I remember all over again what an incredible place St. Jude is. I hope you never need it, but if you or someone you know does, it's there and it's the best!

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

Thanks as always for checking in and praying.

We have done labs twice in the last 2 weeks because the counts were a bit low, and the second time they were stable... but still on the low side. So we are increasing the shot a bit more, and will be back in Memphis in 2 weeks. It's like I said before - taper, add back, taper, add back. This could go on for a while!

Here's a picture from the first day of Christian Brothers - Peter 5th and Mac 7th. It was pouring rain and early so the boys look kind of sleepy.

Mac has been doing well, all things considered. As I told the nurse at NO Children's Hospital (we raced over there durning Mac's lunch/recess) "We're trying to see how we can fit this catastrophic illness into our normal routine!" She was humored by that.

And here's a picture of Annie's first day at St. Matthew -1st grade!!! She's a big girl!


Thank you for keeping us in your prayers! More after our next Memphis trip!

No talk of labwork today, just some pictures for you!

Here's an updated photo of Mac with his original Team MacAttack. They've been with us since Day 1! Dr. Reiss, Martha and Katherine... and Mac with normal cheeks.

Kids at the beach... no oil in sight!!

Mac took this picture of Annie "holding the sun"!!

School starts this week! So long carefree days of summer! We'll get labs drawn again mid-August and will update after that. Take care and stay out of the heat!

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!