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!