What a great summer it was! I loved watching Mac do everything he couldn't do the last 1 1/2 years! It was a mixture of camps, trips, movies, games, and down time. School starts next week and for the first time ever, I'm actually a little bummed. As the kids get older, the schedules get more intense, and I'm not necessarily looking forward to being the taxi driver again. (Or waking up so early either!)

Mac's labs from Children's in July were low, and then the labs at St. Jude on Friday were consistent. So that's not such good news. Remember we had taken the shot down to the .05 level, which is tiny, and were assuming we would discontinue the shot after this visit. But with a hemoglobin of 9.3 and platelets at 79K, we have to continue the shot and actually increase it back to the .1 level. All things considered, that is still a tiny amount, but Mac was really looking forward to having no daily shot. But we have to get the counts back up because school & soccer are about to start. He needs his platelets up and his energy up. When I got a little panicked at the drop, Martha said we're still watching and waiting. She assured me that other patients have taken a long time to taper from the medicines and still went on to full recovery. (She said there really is no "normal" for aplastic anemia patients, there is a best case scenario, and obviously we're way past that point!) Also keep in mind that Mac is not on the same medicine most people are on... this treatment is ATG (rabbit) and Tacrolimus. I call these the "cousins" of the real medicines used, but those are the ones that resulted in the downward spiral 2 years ago. So, our recovery time may be slower for a reason. All we can do is keep our fingers crossed and keep thinking positive!

Since Mac's appointment Friday wasn't until noon, we got in a visit to Graceland, home of Elvis. I figured it was time to see it since we've driven past Exit 5 just south of Memphis so many times. It was very groovy, very entertaining, and we enjoyed it. Not a must see attraction, but definitely fun to see if you're in the area!

We'll get labs checked here in 3 weeks, and back to St. Jude in 6 weeks. Next week, Mac will start 8th grade at Jesuit HS. That's big stuff! Thanks for checking in with us and keeping Mac in your prayers. Obviously we're going nowhere fast...

Mac has been very busy since the last post! He graduated from 7th grade and then we took a graduation trip to Disney/Universal with 2 other families. He is still a roller coaster maniac, and can ride the scariest of rides over and over! It was great to see him having such a fun time! We also went to both waterparks in Disney since it was so hot, and he & his friends covered all the rides - including Plummit Summit at Blizzard Beach!

We were only home 2 days when it was time to go to Memphis again. Mac's hemoglobin was 10.5 again! This makes 3 labs in a row with a hemoglobin in the 10's. Could 10 be the new 9?! I hope so! Platelets still hover around 100K. Enough to live a normal life, but not enough for contact sports or heading a soccer ball. We will decrease the shot to the tiniest amount and check labs here in 1 month and then back to Memphis in 2 months. Our lab checks are getting more spread out... another great sign of his stability and recovery!

As always, our visits to Memphis are a bit of a reality check. While Mac is hovering on the brink of "normal" he is leading a fairly normal life. But seeing the kids there remind us of how lucky we are. We ran into a family whose son is on his 4th Bone Marrow Transplant. Four! Makes Mac's journey seem like a walk in the park. (And this last transplant seems to have done the trick as they will be heading home within the month cancer free!) St. Jude continues to work tirelessly to cure everyone they can! I am so thankful we ended up there and so thankful we made it this far!

We have a half busy, half lazy summer ahead - a couple of camps for all the kids, a trip to the beach, and some down time to relax. Mac may attend some soccer evals this week to see if there may be a place for him on a team in the fall. We'll see how he does! (And definitely no heading the ball for the time being!)

Thanks for checking in and keeping us in your prayers! Have a great summer!

Happy Easter! We had a great trip to Alexandria - had fun seeing everyone and visiting. The Easter bunny found us there too! From there we went to Memphis and Mac had a checkup. His counts were pretty good and the big news is.... the line is out! No more dressing changes, and Mac can resume normal activities for the most part! Goodbye line, hello swimming pool!!




We call this "line in a bag".

What a great milestone! He will still have labs checked every 2-3 weeks, he'll just have to get poked. His bone marrow needs to work a little harder, but it's trying. Hope you all had a great Easter. Thank you for checking in and keeping us in your prayers!

Happy Spring! We had a great time over the Mardi Gras break - we went to Washington, DC. Here's a picture of Mac holding the Washington Monument. Who is stronger: Annie holding the sun or Mac holding the monument?!! (I think he has a future in trick photography!) We walked miles and miles and Mac held up like a champ! It was freezing for us, but we packed our days with activities anyway.

After a quick recovery from our big trip, Mac, Annie and I made a quick trip to Memphis. Mac's labs were ok, not awesome, but good enough to further decrease the shot to the lowest level....again. (Remember we did this already last summer?) Let's see where this takes us. Annie's favorite part is always the visit to the gift shop!

Otherwise things are fine here. Mac and Mo helped at a blood drive for a little boy from St. Matthew. It was good for Mac to be on the helping end of the blood drive, and see what was done for him 18 months ago. And of course he loved eating all the cookies and juice. Mac's illness also qualifies him for a "Make-a-wish" wish, so he is thinking of some good stuff to wish for. I'll keep you posted on that!

Thanks for checking in and keeping us in your prayers. Come on bone marrow.... now would be a really good time to work full force! If only parents got a "make-a-wish"!!

Happy Birthday Mac!! Yikes, there's a teenager in the house! I told Mac that I have the authority to not promote him on to the next year if I don't think it's time yet! (He doesn't think that is very funny.) I love the tshirt he got last year at St. Jude - the one that says "A star was born today"... if I can dig it out, I may make him wear it!

His labs this week at Children's were ok. His platelets have dipped again, below 100K, so I have to watch him a little closer. Hemoglobin still in the 9's. We're still hovering. Everyone tried to tell us this was a long, slow process, but really?!! This is trying my patience. I wish there was cure for bone marrow failure. A magic pill that makes it work full force again!

We have Mardi Gras fun coming up and we'll do labs again mid-March in Memphis. Thanks for checking in with us and keeping up those prayers. We are very thankful for you!

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!!