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!

It's been a while since I've written, but that's because there is nothing to report! Mac did labs last week here in NO, and we haven't seen results. They've been faxed but not received.... lost in space I guess. I can go pick them up but at this point we're leaving for Memphis tomorrow so...

Mac seems fine. We'll see what the labs are there and I'll update this weekend.

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!

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!!!!

Mac & I did a quick trip to St. Jude Thursday and returned Friday after his appointment. It was nice to see all of our hematology team and catch up. They are all so excited that we were home for the month!! All his numbers were up and his chemistries were good (we always pay special attention to his creatinine, BUN, magnesium, potassium). His hemoglobin made it to the low 9's!!! It needs to get above 11, but since he hung out in the 7's and 8's for so long (he gets transfused at 7) it was good to see 9. His platelets moved up a bit more and his ANC was 9600. We are now starting the decrease in the shot. We expect to see his ANC drop as a result, but hopefully the hemoglobin and platelets won't be affected. We'll check his counts again in 2 weeks here in NO, and then go back to Memphis in a month.

He's doing fine otherwise. Just to give you some perspective, when we got to NO Children's Hospital last July, his hemoglobin was 4, his platelets were 7000 (normal is above 150,000), and his ANC was 300. And he'd been to tennis, a friend's house, and was at soccer practice when I got the call from our pediatrician. Kids are amazing! We keep telling him he's gonna feel like superman when his counts get up to normal! He's already beginning to run around and play more as he builds up his stamina.

Thanks for reading! Please keep your fingers crossed and your prayers coming! It obviously takes a while for the bone marrow to recover. It's hard to continue to "wait and watch" but it's all we can do. And we're happy to be doing this from home and thankful we're not in the middle of a BMT right now! That's the miracle of it all.

It's been a while since I've written, but as my cousin Vivi wrote, "I assume no news is good news"!!! You can definitely assume that in our case!! When things get bad, I go straight to the blog!! But since we've been home, we've jumped right back into to our old ways, with a few added duties (dressing changes, shots, etc.) As if we weren't busy enough before....

Mac is doing fine, his labs taken at NO Children's Hospital last week show greater improvements in his platelets, and his hemoglobin in holding steady. We go back to St. Jude next week. There is talk of starting to decrease the dose given in his shot. (This is the shot given to get the ANC up, and it's up pretty high now. Remember the days when his ANC was 0? Unfortunately I remember it all too well. Now it's up at 7700! With the dose decrease, that number will drop I assume. Anything above 1800 is ok. ANC stands for Absolute Neutrophil Count. They are the white cells that help fight infection.)

We had a relaxing Easter, and Mac is doing great with his home bound school program. Miss Cathy is so nice and has been teaching home bound students for 25 years. There's a lot of independent work Mac can do on the computer, so he gets in a couple hours a day. I went on a field trip with Annie, went to a couple of Peter's soccer games, and am having major spring cleaning projects at home. If you open closet doors now, things won't fall on top of you!

That's about it. I'll update again after our appointment next Friday. Thank you for reading and praying for the specific counts. I think God heard the platelets loud & clear. Now we need him to hear hemoglobin. (Maybe megaphones would help!) And we need to pray for steady counts as the medicines start to decrease. I know I'm holding my breath!

We made it back at the end of last week! We came in a few days earlier than expected so we could surprise Peter and Annie. We have labs (here in NO) some time next week, but until then we're not going to think about it! We are enjoying being home and getting into a new kind of groove - sending Peter and Annie off to school and getting organized and unpacked. The home bound teacher is coming tomorrow to sort out our situation and get Mac started on his schoolwork again.


It's been good seeing everyone here & there (carpool, grocery, church)! Thanks for keeping up the praying... as I've been telling everyone, it's great to be home, but we're not out of the woods yet. Someone recently told me that in prayer we could be very specific with God, so.... we specifically need his hemoglobin to kick in and his platelets to keep going up!!!! Got it?! Thank you as always!

More of the same from Memphis! Mac has to take the standardized tests his school takes, and Sue, his teacher, said she would administer them here before we leave. That way he can stay in this sterile environment and take the Terra Nova and we won't have to worry about that when we get home. We are in the process of getting a homebound teacher to come to our house a few days a week to keep him up with his studies (we're trying to talk Sue into coming home with us!) . Otherwise, things are winding down here. We have labs one more time next week, one last PT, and when the testing is done, we're packing up and heading south!! Hooray!! Our next appointment here is mid April!

We're far from being done with the treatment, we still have some hurdles ahead. His counts must keep climbing and then he has to get slowly weaned from the last 2 medicines. That is when we really hold our breath and pray his bone marrow can continue to work on its own. That being said, we're happy we've made it this far! As Sista Mary wrote me, "God promises a safe landing, not a calm passage." We're still waiting for our safe landing. I think it'll be soon!

Thanks for checking in and praying for us! I am convinced it is all your prayers that have gotten us through the hard parts, and given us the peace and acceptance we've needed to deal with this situation. Who Dat? Mac Dat!!!!

It was a pretty uneventful week for us here! Mac's lab trends continue to move up, and he has been weaned from the fluids and his blood pressure medicine. There is talk of us possibly going home soon! He can continue taking his medicine (we're down to 2 oral & 1 shot) and get his labs checked at the Baton Rouge affiliate or even NO Children's Hospital. Then we would come back to Memphis monthly to have a check up. We're definitely here for a couple more weeks as we continue to watch his counts and work out the details of HOME! I am starting to look into the homebound student program, so he can finish the 6th grade from home! Our hope is that his bone marrow is recovered and he is off the medicines in time to go to school next fall. We'll see... one day at a time!

Things are definitely going in a positive direction right now, let's pray it continues and the BMT continues to move out of the picture! Thanks for checking in, keeping us in your prayers, and to many of you, SEE you soon!

HAPPY BIRTHDAY MAC!!!

Yesterday in the clinic, they brought him balloons, and this tshirt, which he will wear today. And the best present of all is that his labs looked good yesterday!!! Small steps on the road to bone marrow recovery!

Since I do all the "talking"on the blog, today I thought I would interview Mac so you can hear from him....

ME: How do you feel today, your 12th birthday?
MAC: 12-ish
ME: What do you want for your birthday?
MAC: stuff
ME: What kind of cake do you want?
MAC: chocolate
ME: Any words of wisdom for your fans out there?
MAC: Nope
ME: Want me to stop asking you questions?
MAC: Yes.

Ahhh... such complex and insightful answers. You can see why I have done all the writing the last few months!! Thanks for checking in and praying. I think he'll get extra blessings (and hopefully extra blood cells) on his birthday!

We made it back Sunday and had school and clinic yesterday. His platelets continue to move up, now we really need his hemoglobin to kick in... and soon!!! Mac's only outing when we were home last week was to get beignets at Cafe Du Monde. He'd been wanting some and he tells everyone here what a beignet is.

Please keep those positive vibes and prayers coming our way!! I feel like his bone marrow really wants to work!!

I realize I haven't written in a while, but we've been really busy. On Friday, Feb. 12, we had our normal appointment in the clinic and since we're in this wait & see mode, we asked for a week off and the doctors thought it would be ok. So we are in NO for the week! It's been great being home and seeing everyone we haven't seen in 7 months! And just being home with Peter and Annie has been fun. We skipped the Mardi Gras scene, but had lots of beads delivered to our door so we didn't feel left out. We'll be back in Memphis by Sunday and back to our schedule of school, PT, and clinic.

Let's hope his counts go up and the BMT continues to move out of the picture! Thanks for praying and checking in.

WHO DAT! Here's a new bead we thought you all would appreciate! Thanks Raye for sending them to us!

Can you see it? It's a flying pig!! Perfect for Dat Tuesday or Lombardi Gras!! Wish we were in that number!! (I obviously spend way too much time on NOLA.com!)

Since our Memphis cheer 2 weeks ago was good luck, here's another one!! GO SAINTS!! WHO DAT?!

For all of you on this roller coaster ride with us, hold on.... yesterday our very wise Hematology team decided to put the HSCT on hold for a couple of months. Mac's platelets have decided to kick in, slowly, and the baby red blood cells (reticulocytes) are showing a tiny improvement. His ANC has remained in the low range of normal lately. There are some genetic tests they want to run and the results take a month to get back. There is some ambiguity in what those results might show, but it may or may not make a transplant a necessity. (Even if the results are negative, a transplant may become necessary anyway if his counts trend downward again. Did I confuse you?) It's all relatively new stuff, but FYI, telomere length is the buzzword of 2010. (You can say you heard it here and work it into your casual conversations if you want to be in the know. Telomeres are the ends of chromosomes, kind of like aglets are the ends of shoe laces.) Anyway, we're back to waiting and hoping we see an upward trend in the next 6 to 8 weeks. Although I've been accused of being a pessimist, or as I prefer to call myself a realist, I told them to keep our room on the transplant floor reserved for April. We'll see if we get there. Hopefully not. They really want to give this treatment plan a little longer, and rule out genetic issues.

So there you have it. The double loop for the day. Let's pray that Mac's bone marrow rebounds in the next few weeks and the genetic/chromosome tests come back negative! As always, thanks for checking in, praying for us, and thinking of us. Who Dat!!

We heard today that donor #2 passed the physical! So it only changed everything by one day. As of now, the transplant date is March 5 and everything works backward from there. He will go in next Thursday evening and start the Campath on Friday the 12th. Then out again if he's doing ok, then in a week later for the chemo work up. We are hoping his old, failing bone marrow will roll out the red carpet for the new marrow, and that the new marrow will feel comfortable in its new bones and not attack any organs (graft versus host)!! That's the nonmedical terms for the goal of the transplant! (While I've become a part time hematologist, I haven't quite specialized in HSCT yet... so laymen's terms will suffice for now.)

I am very thankful for Donor #2 and their unselfish giving of healthy bone marrow to Mac! (Who dat say they wanna donate marrow?) It's also time to start praying for the transplant doctors! As we learned before (remember September?) it gets tricky keeping everything happy and trying to accomplish the main goal. There will be days when Mac is feeling really bad, but all we can do is count the days.... everyday on the other side is a positive day! Thanks for checking in! And Mac said Go Saints, Finish Strong!

We had a blizzard in Memphis on Friday, and were snowed in on Saturday. Sunday, Mac and some other kids went "sledding" on the slope in between Target House 1 and Target House 2. I'm not sure if that's what it's called when you use rubber maid tops and cardboard boxes, but there was sliding involved!

Otherwise not much new to report, just pray Donor #2 is in perfect health!! More later!

We heard today that our 10 out of 10 match did not pass the physical. Mac has a 9 out of 10 match as a back up that is now being put through the process. If they pass the test, we'll be a couple weeks later in the process. If not, it's back to the drawing board. As they explained to me, he is "open" in the search part, so if a great match comes in, they will get a message. Back to the waiting game for us.

Here's a big cheer from Memphis.... GO SAINTS!! We're gonna be watching when the Superdome levitates, stops for a poboy and flies on to Miami!!!

BMT update: It is actually called a Hematopoietic Stem Cell Transplant or HSCT. But we still refer to it as a Bone Marrow Transplant. Mac will go into the hospital on Feb. 10 for about 5 days to get his immunosuppressant. (They will not be using ATG this time!) Then he'll go back in on Feb. 23 for chemo and on March 4 he will get the donor's bone marrow. His match is a 10 out of 10 so that's an advantage going in. We don't know anything about the donor and they don't know anything about Mac except that he's an 11 year old male. (After 1 year we are free to contact each other.) At some point at the end of January he has to have his single lumen changed to a double lumen. He also has a schedule full of appointments, scans, evals, and of course school and PT. He's feeling pretty good and we are just trying to make the most of our 'freedom' until we go back in. He's mastered the Rubik's cube in his spare time! You can see his cheeks are almost back to normal.


Thanks for checking in and praying. Hope you are enjoying the day off if you got one!!

I haven't forgotten to update, there's just not much to report. I meet with our BMT attending on Friday so I'll know more then. Mac is feeling good, going to school and PT and clinic. We're getting him in shape because the stronger he is going in, the better. (That was Mo's idea, and the doctors agree with him!) Today he had school and we went to see a movie. He's been craving hibachi, so we've been to Shogun twice. (Whatever it takes to beef him up!!) In the meantime it's the calm before the storm (are you having deja vu from my July posting?!) And since the weather has reached the double digits (no kidding - it was 9 degrees one day last week!) it's more bearable to be outside and go places!

I met with Dr. Reiss and Martha today and they have decided it is time to pursue a Bone Marrow Transplant. I have lots of questions and meetings ahead, but what I do know is that there are going to be evaluations of organs and bloodwork in the next couple of weeks. So I assume we'll begin the process by late January or early February. Will let you know more as I find out.

Happy New Year! We've been fine. We've enjoyed having Peter and Annie with us along with some friends who came up to see us. Mac's levels are stable, nothing new to report. Still waiting for RBC and platelets to show up. A decision about a BMT will be made soon, until then we're just watching for signs of hope!

Thanks for all the Christmas cards, packages and emails! It's always fun for the kids to check the mail box!