Since we're a little preoccupied this year, I'm not mailing Christmas cards. So here's our Christmas Greeting from Memphis! Hope you are enjoying yourself.

Merry Christmas!!

We've had a weird week... Mac's been nauseous and not wanting to eat or drink much, which throws all his labs off! So now we have a 'take home IV kit'. He gets fluids 8 hours a day just to keep him hydrated and it has helped him quite a bit. He can carry them in a backpack, so we can continue our daily routine while he has his "drink"! His kidneys seemed happier at the end of the week once the fluids had been started. We're waiting to see if this passes. He also had a bone marrow aspiration on Wednesday to compare it to the one he had on July 16. Some things were better and some things were the same. It wasn't super encouraging... but Dr. Reiss is not ready to commit to a bone marrow transplant yet. On that front, a donor has been identified and contacted and is ready when we need him or her. So that's good. A bone marrow transplant would involve 4-8 weeks in the hospital, a minimum of 100 days in Memphis, and 1 year out of school. He would get chemo and ATG (will it be rabbit or horse?!) to prepare him for the transplant. That would last about 10 days. Then he would get the bone marrow through an IV, where it will work its way to his bones. After that there's a lot of waiting and watching. This is just an overview. I'll give you more details if we get there.

On a similar note, I just want to personally thank everyone who has signed up to be a Bone Marrow Donor. I keep thinking about the stranger out there that matches Mac and is ready to save his life! That could be you one day, and I hope you think about our "11 year old male" when you say Yes!

We are excited to have Peter and Annie and some of Mac's friends come see us during the holiday. We have more fun at the Target House when we have visitors! There is even talk of snow flurries - how exciting! I know the top 3 things on my Christmas list are white blood cells, red blood cells and platelets for Mac! (Oh, and cheek bones makes 4!) Hope you take time out of your busy schedules to be thankful for the healthy children in your life. (I stole that line from the St. Jude commercials.) Thanks for checking in and praying for us!

Mac finished his steroids on Monday. Everyone is watching him closely - especially his kidneys. It will still be a while before his puffiness goes down. Maybe we'll see cheekbones for Christmas. We were hoping to go home for Christmas, but he's still too transfusion dependent, so Peter and Annie will come here for their whole vacation. Mac's ANC has been trending slightly downward this week, so we are watching that as well. We are two months in to this treatment and they will evaluate the trend at 3 months. But today the BMT was thrown out again, just to be prepared. I am a little bummed, but everyone is still hoping we won't have to go there. But if things look bad in January, they will have all their ducks in a row and we can get started right away. (I mentioned he could stay on the steroid until he goes to college as far as I was concerned.... puffy cheeks and all!)

Time for the big prayers again! Thanks for checking in with us.

We had a great time this weekend with the members of Team MacAttack descending upon us! First the business - our team was 6th in fundraising with over $31,000 raised. That is so awesome and again, it's all thanks to you all: our blog readers and biggest supporters. (St. Jude quick fact: it takes $1.5 million a day to run the hospital.) Here's the official poster with our name on it...

....and our plaque. "Running for a reason" with art created by a patient. Need I say more?!!

Our signage - getting ready for the race. The route took them right by the Target House and Mac & I wanted to be prepared!

Team MacAttack cheering section (Mac, Jane, Gail, Laura, and me. And Eric who was taking the picture for me.)

Now for the runners. I couldn't catch them all because of their supersonic speed. But here are a few of the ones I was able to capture.

Mo stopped by to give Mac a hug and say something like "you'll be running this next year with me!"

Phil and Mark race by with a quick High Five!

Raye has too much energy for mile 10... How about the full marathon in 2010?!!

Tiffany and Susan give a quick wave & smile as they dash by!

Santa Sarah stopped for a chat

Ann & Stacey trained hard but due to injuries chose to walk and enjoy the day!

At the Heroes' Lounge after the race....

Mark was the only member who did the full marathon this year! He ran for the reason!! And he looks so great....way to go Mark!!!

Here's a really bad picture of most of the team members after the race. We'll get the official copy in the mail and scan it in. Team MacAttack got interviewed (with Raye as our spokesman) about fundraising and being a St. Jude Hero. Maybe they'll be seen on the Today Show or Oprah...

The Scotts lookin' good in their post race prom pic...

Same for the Lathams

Maurie & Willie had a great time!

Later that evening, we got together at Susan's aunt's house (Patricia Flynn - who is a doctor at St. Jude) for some relaxing and Memphis Barbeque. Here are some of those party pics.

Susan and her cousin Kenny

Raye and Rigby

Phil and Mo

Raye, Mark (and Phil - yes, you're in the picture)

Sarah and Mac relax after a long day.

Rigby and Susan doing a little cleaning up

Ann, Stacey, Gail and Maurie visiting

And last but certainly not least, these are our wonderful hosts, Tricia and Jerry Flynn. Thanks again for a fun & delicious evening!

Hope you enjoyed these pictures. I think all of the members of Team MacAttack plan on returning next year. Maybe some of you out there would consider joining the team and 'running for a reason' also!

Not much new to report this week. Mac had labs drawn Monday and then we won't have them drawn again until Friday. His ANC is in a good range, and we're still waiting for his RBC and platelets to kick in. In the meantime he just has PT and school. He will finish his steroid next week, and they will watch to make sure he stays stable - especially his kidneys. I think they will! I forgot to put a picture of Mac with his teachers on the last entry, so here's that picture. Miss Erin teaches Mac Algebra and Miss Sue teaches him everything else. The classrooms are new - they just moved into them in Oct. They're very nice and the teachers are awesome!



We are looking forward to have the runners of Team MacAttack join us for the weekend. I'll put pictures of that on the blog after the race!

Thanks for checking in and praying for us!

Happy Thanksgiving! For all of you who are our regular blog readers, I'm very thankful for you! And as a treat, no boring paragraphs from me! Today I finally put some pictures on the blog for you to see with your own eyes what Mac does daily! I promise to put more on soon!

Here is Mac in the ambulance being transported to St. Jude on July 15. This is when it all began! (You can tell by his cheekbones and tan!)


This is Mac getting platelets in the medicine room.

Mac with the original Team MacAttack!! Dr. Reiss is our primary hematologist and she's a courageous, skillful, caring, genius doctor! Martha is our wonderful nurse practitioner who sees Mac in the clinic. We love her so much! And Katherine is Mac's Child Life Specialist who comes in to see Mac but I usually end up talking her ear off....

These are pictures of Mac at PT with Angela. The stretching part is hard work (for now) but mostly it's fun and games!

This is Mac getting his blood drawn from his central line with Debbie. He gets this done MWF for now.

Here is Mac with Melissa who is one of the great nurses on the 2nd floor. Needless to say we got to know them all and we love them. They truly care for the kids they take care of!

Peter and Annie and Mac in their new Team MacAttack tshirts! (Looks like a good Christmas card photo to me!!)

Here's Mac and my mom - Carmelina - in the waiting room of the Hematology clinic in early November.

Hope you are enjoying your turkey! I'll be asking you to pray again tomorrow; today is reserved for thanks!

Today marks 3 weeks since Mac's last blood transfusion! That's the longest he's gone since we started this whole thing! There were times in the ICU when he was getting platelets twice a day and red blood every other day, so you can understand our excitement! His bloodwork shows signs of a few reticulocytes. He will probably need a transfusion tomorrow (definitely platelets, maybe both), but the goal of this treatment is for the transfusions to be spaced farther and farther apart until he is finally transfusion free. (Red blood cells will come after the ANC and platelets are last.) We're getting there! His ANC continues to move up. He still has a few weeks left on his steroid as the tapering is very slow. It'll be nice to see his cheekbones again!

For those of you who are following our progress, Team MacAttack has raised more than $23,000 and it's still going up! We're in 5th place overall right now, but I think we'll be in 4th before too long. And it's all thanks to you! St. Jude is an amazing place and Mo & I plan on supporting them for a long time in the future. You can't put a price on the life of a child!!

We are also very excited to have Peter and Annie come spend Thanksgiving with us. (Mac said he was getting a little bored with just his parents.) Our Labor Day weekend was kind of a bust, so we're really looking forward to being together and having some fun!

That's it for today. Thanks for checking in and praying for us!

We had a good week - not too much to report. I'm going to take some pictures over the next few weeks and try to put some on the blog. That way you can see some of the St. Jude sights we've been talking about for the last 4 months! Mac is just doing PT, school and clinic visits. He got platelets twice last week, but hasn't had a blood transfusion in over 2 weeks. (Woody, he's still living on your blood!) We are thinking he's beginning to make some reticulocytes (baby red blood cells)! Just a few, but hopefully it's a sign of things to come! He's feeling much better and this evening we were able to stop by a soccer field in Memphis where some kids from his soccer club had games. It was great to see familiar faces!!

Short but sweet tonight. Thanks for reading! And please keep up the prayers!

We had a good weekend and today was clinic and school. Mac gets a little better each day. His ANC moves up and down, but the general trend is up! If this treatment continues to go well, we may be able to avoid a Bone Marrow transplant in the future. They have found possible matches for Mac, but they have left it at that for now. If it becomes necessary, they will contact the donors and do the further testing necessary. But for now, we are all hoping this treatment will get Mac back to normal. So, while we are very thankful we made it through that big hurdle in Sept/Oct, our new prayers are for treatment #2 success. (We're kind of back to square one! In fact, I think I'm going to forget Sept/Oct even happened!!)

Thanks for checking in! I know a lot of you are having an "Ida" vacation. Stay safe!

We did get discharged on Sunday and are back to clinic visits and school and PT. Mac's ANC is going up and he's feeling a little better every day! We are keeping a close eye on his labs like magnesium and potassium and we will start a long slow taper from the steroid today. His kidneys seem ok for now, hope they stay happy.

It's finally not raining in Memphis and it's good to be out of the hospital. They actually have a Fall here, which is so nice. I hope the next entry is more of the same - uneventful!!! Thanks for checking in!

Mac is doing much better now, his pain is down to his knees and his feet. His temperature and BP are pretty stable and his ANC is moving in the right direction slowly! Once we can keep his pain under control with oral medications as needed (which will hopefully not be often), we can be discharged. That will probably be Sunday!

Halloween is a big deal here and today we got to experience "reverse trick or treating". All the departments dress up in themes and come to the rooms of patients. So all Mac had to do was hang a green sign on his door (meaning 'yes come in') and sit and watch the candy roll in. The costumes were awesome and Mac had a photographer take a picture of him receiving treats from the Wizard of Oz crew. I'll let you know if it gets used anywhere. It was fun for us all as we have been a part of the 2nd floor theme (The Grinch) for so many weeks. They even had a Mac store in Whoville. That's what you get when you're on the frequent inpatient program!

Thanks for reading and praying and helping keep our spirits up!

It's Tuesday and I have both good news and bad news. First the good....we got discharged on Saturday and had a great weekend and Monday. And Mac's ANC went up a bit, so now we have some numbers on the board!!! And Team MacAttack is in 2nd place and moving up! Now the bad news... we got readmitted today. Mac woke up with aches and pains and since our clinic visit was at 8am, we were in the right place at the right time for once. They addressed his pain, but his blood pressure was fluctuating and he developed a fever so back up to the second floor we went. This time we got the big corner room with extra windows. (It's the little things that make a difference!) It seems the serum sickness took a little longer to get here this time. We're hopeful that this time his symptoms will be monitored until they go away completely, and hopefully quickly. The Target House is great and we are very thankful that we were moved. Mac said today he's sick of feeling sick, but he is really being a good sport. Everyone has commented on what a great patient he is still being.


Here's our address at Target House:

Target House II
1811 Poplar Ave.
Memphis, TN 38104
attn: Maurice A. Carr, Room 421

Thanks to everyone who is supporting Team MacAttack and St. Jude. If we have to be going through this, this is the place to be. And thanks for the prayers and well wishing. I'll write again soon.

Mo and I spent yesterday moving in to the Target apartments. (Actually Mo did it all, I just showed up at the end!) It's a beautiful facility and we have a 2 bedroom apartment with a den and kitchen. It seems huge compared to the hospital room and the room at Ronald McDonald. And I'll finally get to cook - never thought I'd be happy about that. But after 3 months, takey-outey gets old! We are pretty settled over there, so when we get discharged, Mac can go straight to his new hangout. He's looking forward to getting out - although he did mention he's grown fond of hospital beds. He likes pushing all the buttons.

Here's a link to the site of Team Macattack - the group that is running the St. Jude marathon in December. I bet there are some runners out there just dying to get in shape for a good cause! Or you can consider contributing to the team if you're just not ready to commit to running (please pick a runner who hasn't reached their goal of $500 and donate under their name.) Geaux Team Macattack - let's raise the most $$ for St. Jude!

https://waystohelp.stjude.org/sjVPortal/public/displayTeamPage.do?eventId=55854&programId=401&teamId=997

Thanks for reading, sending packages, and supporting us. We really need his ANC to go up - it's still lower than when we got here in July. (The red blood cells and the platelets will fall in line later if the ANC is up; so that is why we're always focused on that number.) When Mac gets his shot everynight, I do a little cheer - Go Bone Marrow! Pick up the pace! Make some cells! (obviously I was never a very good cheerleader.)

So please keep praying. That is what we need the most. Thanks as always!

For the first time in 7 1/2 weeks, I heard the D word.... discharge! There is talk of switching most of Mac's medicines to oral and start decreasing his fluids - that is what they do to prepare you to be outpatient. Of course we're leaving with many more medicines than we came in with (and we thought that was alot then...) So I'm not sure of the timing, but when decisions are made, things usually move quickly. I assume they're talking about the end of the week. He will still do PT and his ANC is still low, but being away from the hospital will be nice! I will keep you posted.

Mac finished his 4th day of ATG today. He did fine. But as we've learned before, serum sickness kicks in a little later. We're hoping the rabbit will be kinder than the horse. His ANC (Absolute Neutrophil Count) is still 0, so we're waiting patiently. He continues to do well with his rehab. PT is fun and he does a little more every day. They make it fun for him with games and gadgets, so we all look forward to PT. His arms and legs are so skinny, but strong. He's making some progress with school work too. That's it for this week. Thanks for reading and pray for his ANC to go up steadily. (Or I would take miraculously fast of course!) Pray pray pray!!!

Just a quick update to let you all know we started the ATG today (not yesterday like I'd originally said.) Mac had a good weekend and was taken off the TPN - he's eating again! He is doing better physically and his school teacher has been coming to see him in the room. So we're really pursuing 3 paths now: continue rehab, jump start his bone marrow with another round of treatment, and behind the scenes continue the search for BM donors in case we end up there in January. I am hoping this course of ATG and tacrolimus (this is the substitute for cyclosporin) will do the job without all the side effects. Time will tell. Remember to add a few extra prayers for Mac in your daily routine... miracles can happen. Thanks and I'll keep you posted.

I met with the hematologist today and the plan of the moment is to do 2 things at the same time... the first is to continue the path toward BMT aiming for January while at the same time repeating a course of ATG (this time with rabbit serum) which would start on Monday. It's all very intense and Mac will be monitored closely, especially since we know what serum sickness can do to him. I'm concerned because we're 2 1/2 months in now, and he's that much weaker and sicker than we were in August. But when your ANC is 0, and shows no sign of going up, they don't have a lot of choice. He has no way of fighting infections and flu with no white blood cells and something has to get his bone marrow jump started. And if things are going well in January, they can always call off the BMT. (By the way, it was the cyclosporin that made him hairy, not the ATG horse serum, in case any of you are still confused.) And since we ran the horse jokes into the ground, I'm holding off on tails, ears, and carrot jokes. I'm not thinking he's in the mood anymore!!

It's kind of like running a marathon... Thank you for keeping him in your prayers.

Not much new to report today. Mac is doing more at PT daily, eating a little more, and feeling a little better. They told me that for every day you spend sick in bed, it takes 3 to recover. In other words, it's a slow road, but in the right direction. His ANC is still low. So they started the search for a MUD (Matched Unrelated Donor) yesterday. I have no idea of the timing of anything... how long we give the Tacrolimus, how long until a BMT is confirmed, etc. Tomorrow I'll meet with our primary hematologist and I'll update again with more information. In the meantime, all we can do is pray more! Thank you for checking in!

It's Sunday morning and Mac is down to about 5 pounds of fluid (my calculations), which is good. His kidney function has been stable the last few days; there is still some concern about his gall bladder. He's eating little bits throughout the day, but he feels kind of nauseous sometimes. He's still on a thousand antibiotics some of which will slowly start ending this week. So we're stable/going in the right direction as far as this - what do I call this? - 5 week landslide is concerned. The problem is that stopping the Cyclosporin due to the seizure has done nothing for his aplastic anemia. His levels have hit the bottom and so he started Tacrolimus Thursday. Everyone is waiting to see if his ANC will start moving up. So far it hasn't. (Come on small miracles, we need you now more than ever.) There are grumblings about starting searches for non-related bone marrow donors in case we end up going that route. It's scary and exhausting... have you heard me say that before? Mac is hanging in there. And so am I. Mo ran home for the weekend to hang out with Peter and Annie and my mom, and my friend Sara came to spend the weekend with me and Mac. Please remember to keep Mac in your prayers and I'll update again soon.

Mac had his MRI yesterday and then we came back to the second floor. They are happy with how it looks and clinically he's showing signs of recovery. These rooms are much quieter than ICU - there's a lot less beeping, lights, and constant monitoring so it seems more peaceful. He had an ultrasound this afternoon to see if his abdomen drainage tube can come out soon. (He's still got about 12 pounds of fluid in him according to my calculations.) They are also looking at his organs - gall bladder, liver, kidneys, colon, lungs. He was assessed by PT this morning and we are doing what we can as far as moving him around in bed and to a chair, very carefully. They feel like once all the fluid drains he'll make a fairly quick recovery. The skin care team is keeping an eye on him for bed sores. The respiratory people come in regularly to work his lungs. His TPN (nutrition) will not be reduced until he shows he's eating enough - not there yet.

So that's where we are today - more tiny steps toward recovery. Back on the second floor, thank goodness! Everyone keeps telling us this recovery will take time... so we're still being patient.... again. Mac is getting back to his old self (hindsight showed me how the seizure affected his personality.) He's still got lots of discomfort but he's calm and polite again.

I'll update again soon. Thanks for keeping Mac in your prayers!

It's Thursday night and this afternoon we moved back into a Step Down room (remember this is where we started early last week). We have pretty much taken the full tour of the ICU now. But we're one step closer to the second floor....

Mac is slowly making improvements: He is down to the lowest amount of oxygen and he continues to do his breathing exercises like a champ! They want to slowly start weaning him from the IV blood pressure medicine and get him on an oral one - this will take days. He has been cleared to start slowly eating food as he can tolerate. He had some toast today. The fluid in his upper torso is greatly decreased; his bottom half, legs and feet are still puffy. No fever. Tuesday's EEG showed no more seizures. He still has the tube in his abdomen for draining, but the chest tube came out yesterday. We will not start physical therapy until after next Monday's MRI. But we can do little things like help him move his legs and feet around. (He is physically capable of moving limbs, it's just that he is sore in different places b/c of his drainage tubes and IV lines. Plus he's been in a bed for a long time...) He's still tired and little confused about things, but I think overall the seizure will be 'reversible'. His vision seems ok.

Those are some of the teeny tiny steps toward improvement. But he seems really sad and I know he is so over this hospital stay. Some of this can be attributed to the new medications and some of it is just reality - he's tired of feeling bad and tired of being patient! But we are trying to remind him every minute that we are moving in the right direction and he will be better soon. Once again we have nurses fighting over him because they love him and want to see him get better! The staff here is so amazing as I've mentioned before.

I'll write again soon with hopefully more tiny steps in the right direction. Thanks so much for keeping up the prayers!

It was a rough weekend for us, but Sunday afternoon things got calmer. Today Mac had an MRI to see what was going on in his brain. We'd heard grumblings all weekend about PRES syndrome, which is what the MRI confirmed. This basically means the seizure happened because of the steroid, the cyclosporin, and his elevated blood pressure. So now he is on a BP medicine through his IV as well as an anti seizure medicine. They are taking him off the cyclosporin for now. His demeanor has changed - he's very irritable and sensitive to light and touch. However, the R in PRES stands for reversible, so it will take time but the real Mac will reappear. I assume we'll be in ICU for a while now. They are doing another EEG tomorrow just to make sure he is not having anymore sub clinical seizures and will do another MRI next week. There are still other issues, but they are being maintained and have taken a back seat to his brain - his very funny, very smart 11 year old brain.

Mo and I are hanging in there. The nurses in ICU make sure you take care of yourself while they help take care of your child. The doctors here persevere no matter where the path takes them. The deacon and priest from St. Mary’s have been a tremendous source of strength. But, our long road just got longer which means your prayers just got even more needed. Thank you as always for thinking of us, praying for us and checking in.

It's Friday night and we are still in the ICU. We thought we were taking a turn for the better Thursday. Then this morning Mac had a seizure while Mo & I were in the room with him. This led to a CT scan (which showed no bleeding in the brain) and he's been on an EEG all day. It showed two more little seizures even though it wasn't visible to us. He also got the fluid drained from his abdomen to see if that would help his blood pressure go down. He has been very uncomfortable and drowsy all afternoon. So here we are again, a huge puzzle to the doctors and running another series of tests over the weekend and giving him more medications. The neurologist thinks it is related to his blood pressure, but of course, each specialist has his own take on the matter. Once again we are exhausted and scared. Ana and I brought Mac in 3 weeks ago today for a pain in his side. I never envisioned I'd still be here with him. Please continue to light the candles, say the prayers and think positive. Mo and I are in agreement that it is your prayers that are getting us through this.

Yesterday afternoon Mac had his chest and abdomen drained of fluid. They left a drainage tube in his chest so it can continue to drain today. Unfortunately, the abdomen is filling up again. His breathing is easier because his lungs are clear. Today they are waiting to see what happens. They may have to drain his abdomen again tomorrow. The GI doctor thinks alot of this can be explained by C Diff. We're still waiting for results from the nephrologist because it could be kidney issues. He is still having fever. The early results of the fluid studies do not show bacteria. It's good to keep ruling things out, but it's also frustrating to not know what's going on. Please pray that God guides the doctors through this puzzle to bring Mac comfort, relief and healing. More later...

We are in the ICU (they call it a step down room. I guess there are some rooms that are for worse cases; we're just sort of bad.) Mac is on more monitors and they are trying to help with his breathing. He's still running fever. The CT scan showed tons of fluid build up in his abdomen and between his lung and chest wall. They gave him more lasix over night to start getting rid of some. (Mo was on the night shift last night and they were up most of the time. But in this game, being nocturnal comes with the program.) This afternoon he's going to get the rest of it drained by an interventional radiologist. He will be sedated. They will study the fluid - that may contain some answers. This will also relieve a lot of his discomfort and he will hopefully feel some relief with his breathing. They didn't see any major fungus issue which is good. The other organs are still having various issues, but they are maintaining the balance with IV fluids of all combinations as needed. Like I said earlier, it's very complicated and we just have to trust the doctors here.

I guess my gut feeling is that alot of these things will eventually correct themselves if the real problem is taken out of the equation. The ICU doctor for this week is from Baton Rouge (she grew up in NO) and works here 1 week/month. She recognized Mac's Lafreniere soccer tshirt right away.

Please keep praying as I know you all are. Will update again soon.

Today we are being moved to the ICU for closer monitoring of Mac's situation. They are doing a CT scan this morning and looking for more clues. He's continuing to get fever and his breathing is labored. We will update when we get results.

Thanks to everyone for the prayers and messages. We are still battling something. With all the medicine Mac is on, he's still getting fever and this has the doctors puzzled. Are they missing something or is it just that the medicines need more time to do the job? Unfortunately it's a tricky game b/c different organs need different things and there's a fine line to keep the balance. It's all very complicated and we're trying to keep a handle on it but the bottom line is we have to trust the doctors here. Mac is an incredible trooper. Our nurse today has been here for 19 years and said 'not too many things amaze me, but your son amazes me'. He's feeling miserable and we're just ready for this to subside so he can feel some relief.

Please keep praying. We need to find the source of the fever so it will go away! And then we can begin to recover from this.

We’ve been hesitant to update the blog because we keep thinking each day Mac’s going to get better so we can write something positive. Unfortunately, these past few days haven’t really been positive. We came in 11 days ago for a pain in his side which they said was probably just constipation. He quickly developed hematuria and fever. Now we have an infection in his gall bladder and possible issues with his liver and kidneys. He's retaining fluid. He also has pneumonia in his right lung. He’s still positive for C Diff. He’s on 5 different antibiotics along with the rest of his medicine. Right now they’re throwing all the antibiotics at him to wipe out anything they suspect. It’s been quite a rollercoaster and we are scared and exhausted. He is still such an amazing patient - when he’s miserable he’s just really quiet. The nurses have told us many times how great a kid he is and how they all want to get him back home soon.

Annie is with us and since today is her birthday, the nurses gave her balloons and a tshirt and necklace, and Katherine (the child life specialist) took her to do a craft while we talked to the doctor. She’s been a nice distraction to have around.

The deacon from St. Mary’s Catholic Church nearby came to see us tonight and spent some time with us. It’s hard to understand and watch a child suffering. So tonight I’m asking again for more prayers for Mac to get through this big hurdle. We are very thankful to you all for taking time out of your busy schedules to think of us.

It’s Saturday night and it’s been great for us to all be to together. On Thursday when Peter, Annie & Mo got to St. Jude, I was sitting in the main lobby reading and waiting for them so Mo let Peter and Annie out of the van. They ended up sneaking up on me and surprising me, causing quite the commotion downstairs! The security guard ran to get them toys and coloring books and they ran up to Mac’s room to see him and Ana who stayed one more night with me!

We’ve made some more progress with Mac. It’s been a roller coaster because it seems there were always 2 different problems going on. Something viral definitely played a part, but the last result is that Mac has contracted C-Diff which is a bacteria in his intestines (we actually all have it present in our intestines, it's just when it gets out of control that it's a problem.) It’s very common in hospitals and nursing homes because people with low immune systems are very susceptible, as well as people who are on antibiotics. It really got a handle on him and his recovery will be one day at a time. He’s eating a little, but not because he has an appetite. He’s still feeling bad, but his fever seems to be subsiding. It was crazy this week as we’ve gone through several different possibilities and had to rule each of them out.

It has been good for him having Peter here to play games with and Annie to entertain him and be his nurse. And P&A have had a good time because if you aren’t actually sick, St. Jude can be a fun place. They have met our favorite nurses, visited the the gift shop several times and they love the cafeteria (or food court as Peter calls it - it really is nice.) I told them they couldn't leave Memphis until Mac gets discharged and they agreed - we're all in this together. Peter wants his buddy to feel better and Annie just hates to see him sick!

Thanks for checking in with us. Now we need double the prayers - first for recovery from this setback and second for recovery from the big thing!! But I know there are lots of you out there and we'll be heard if we just pray enough! I hope you are all having a good weekend.

It's Wednesday afternoon and we're still in the hospital. When we're inpatient, the days feel like weeks! We got here Friday in the middle of the night b/c Mac was having pain in his side and a fever. Because the medicine he's taking is so hard on kidneys, we were suspicious of something in that area. He progressed to having other symptoms and lots of tests were run. The current thought of the day is that he has a viral infection. But when your immune system is being suppressed, it's hard to fight things. I think we have turned a corner and are taking small steps toward recovery. He's eaten a tiny bit for the first time since Friday. He's still exhausted and feels uncomfortable, but he's not in pain. And he's still running a low grade fever which will hopefully go away soon! This has been a huge reality check for me; as much as we can't wait to get home, it's also scary to expose him to the real world. What other people can fight off with a little tylenol lands us in the hospital for a week. But I feel confident our team here won't let us go until they know he can handle it.

We are looking forward to having the rest of the crew come see us this weekend. Because of our situation here, they are planning on staying with Gail and visiting as much as we can during the day. My sister Ana is going back home for now, I couldn't have gotten through these last weeks without her!

This week has been a bit of a disappointing set back. But I'm sure he'll bounce back as only an 11 year old boy can and get back on task of getting his bone marrow jump started!! Please continue to pray as I know you all are!!! Thanks as always!

31 August

This past week was both good and bad. First the good, Mac was able to start school this week, got over the side effects from last weekend and ate really well through Friday. We also lost “Fat Mac” as he was finally able to rid himself of all the fluids he was retaining. Unfortunately, on Saturday, he began experiencing some more side effects and had to be admitted back into the hospital. Barb wasn’t able to write because she didn’t bring her computer with her to the hospital on Saturday so I’m giving this update. I told Mac that he had to get better by Thursday and be able to go back outpatient as Annie, Peter and I are going up to visit for Labor Day. I told him that he wasn’t going to be able to avoid Annie and Peter tickling him and picking on him if he’s laid up in bed. Let’s hope that he’s able to get out and enjoy this weekend!

We had a very uneventful weekend - thank goodness! We are back to our MWF clinic visits and Mac started school today! He goes 1 hour everyday and gets a teacher all to himself. He even gets homework! The teachers work with Christian Brothers to get his books and assignments. They commented to me how nice and cooperative his school is! I told Mac we should have brought his uniform, but he looked at me like I was crazy.

The clinic visits are mainly monitoring his levels and medications. Hopefully things will remain uneventful and boring. Please continue to pray for his full recovery! Thanks for checking in!

It was a long week but we finally got discharged Thursday evening. Mac got the full experience of side effects and it was tough for a while. Today we had the early appointment in the clinic and ended up spending most of the day there - he got more platelets and that process can take some time if the Medicine Room is busy. But the good news is that hopefully the worst of the serum sickness is behind us, Mac made it through like the champ he is, and we have the weekend off!! Our nurse practitioner encouraged us to relax this weekend and do something fun (in our case it will probably involve Target... can't get more fun than that!!!) Ana & I are coming up with plans to make our room in the Ronald McDonald House the palace we know it can be. (Maybe it will become a new segment on HGTV - how to decorate your home away from home...)

Thanks to everyone for checking in and sending us mail! Please keep up the prayers; that is what we need the most!!

We have been inpatient since Saturday. Mac has had fever and aches and nausea and blood pressure fluctuations - all of which go along with what they call "serum sickness". We just have to get through this, and continue to give him his necessary medications. They try to make him comfortable while it's happening. Hopefully it won't be too much longer. He's been such a trooper and to quote Liz E., "he's my hero"!!

Thank you to all who helped with the Blood Drive at St. Matthew today. Mo reported that it was a huge success - apparently over 100 people actually gave blood (and another 30-50 tried but couldn't for some reason). 84 people became bone marrow donors. That is great! On behalf of sick kids everywhere, I thank you for doing something positive that really helps. Mac is getting platelets transfused as I type. These kids get blood transfused like everyone else gets a snack.

I know Mo has told me every day since he's been back that he feels overwhelmed (but in a good way) with the amount of support everyone is showing. We are so lucky to have so many people care and try to do whatever they can to help. Keep praying, and if you evacuate to Memphis, give us a call!

Still feeling the side effects, but hanging in there. Today Mac woke up with fever so we were in the clinic most of the day. His counts are pretty good though, so that kept us out of the hospital for now. He's skinnier than ever (can you believe it) but I keep telling him when he feels more normal we're gonna beef him up!! He's not really hairy yet either. The doctors keep checking him for a horse tail. (That's usually good for a laugh even when he feels bad.) The effects he's feeling are a result of the ATG that he got for 4 days last week, coupled with the fact that he's decreasing his dose of steroid. I guess the steroid sort of kept some side effects at bay and now his body is saying "what did you put into me?!" Hopefully he won't be too miserable too much longer. But they keep telling Mac how great he's doing overall.

Mo is planning on staying home to oversee the renovations we're doing to help 'debacteria' the den and Mac's bathroom. His mother is helping him with Peter and Annie there. My sister Ana is coming to stay with us here - it's time for some reinforcements!

Thanks for all the notes, pictures and packages. Even on bad days Mac asks if we should check our mail box! On one hand it's hard to believe we've been here a month; and other times it feels like years. Keep up the praying. I'm sure they're being heard upstairs!

Mac has had a bit of a rough 2 days since we got discharged, all of which was expected. He basically feels like he has the flu - chills then sweats, nauseousness, achiness, some shakiness. It makes keeping all the medicine he has to take hard to keep down. But he's managing well and still isn't complaining. In the clinic they are very reassuring to him that he's doing great and whatever symptom he has they try to address with a solution. Today was better than yesterday, and we're just taking it one day at a time.

I'm getting better at dressing changes, line flushes and giving shots! It still makes me nervous, but with my manual out, I just go step by step.

I know Peter and Annie are having a good time seeing everyone from the neighborhood and having Mo home with them.

Thanks for your continued support and prayers!

Mac finished his 4th day of ATG yesterday and we are being discharged today! We are going back to our home away from home, the Ronald McDonald house. He will continue to have clinic visits MWF, but hopefully all will stay calm and we will be able to stay out patient! We are leaving here armed with boxes of supplies for all the line cleanings, injections and oral medications he will be taking.

Mo will be going home tomorrow to help with Annie & Peter's first week of school.

If you want to send mail, it's easier for us to receive it at the RMH. Here is the address:

Maurice A. Carr
Ronald McDonald House of Memphis
535 Alabama Avenue
Memphis, TN 38105

Thanks for checking in with us and keep those prayers going!

Today was the 2nd day of the treatment schedule and Mac is doing very well. He never complains and he tells the doctors & nurses exactly how he's feeling. He's got to go through 4 days of the doozy immunosuppressive drug ATG, and while he's receiving that he has to be constantly monitored. (That's the drug with horse serum.) The first day was 8 hours, the other 3 days are 4 hours. His side effects haven't been too bad from what we've been told - some chills and hives. He's also getting a steroid for 2 weeks and another immunosuppressive drug (this one he will stay on for the duration and is the one that may make his hair grow more.) Mo and I are learning to flush his line and change his dressing. On Sunday we will learn how to give him his injection (the drug that will encourage his bone marrow to work - he will be on this long term as well.) We are thinking of adding the initials RN to our names. Mo has never washed his hands this much in his life!

Thank you all for your continued prayers. The people here are amazed by the stories we tell them of the great support we have received from the Ridge and beyond. We feel lucky to have so many friends and family thinking of us and helping us get through this.

Mac got his central line put in this morning and the rest of today is dedicated to recovery and getting ready for tomorrow when the treatment will start. The next two weeks seem the most intense and then just a steady dose of medicine until he's recovered (there may be another intense session in 3 months if he doesn't respond well enough to the first one). The central line was put in so that they can administer IV's and draw blood without having to poke him every time. Mo and I will learn to clean and maintain the line, as well as give injections! Yikes! As I said earlier, we are hoping for as few side effects as possible, as few inpatient episodes, and a sure cure in the end. (With this treatment plan there is always the possibility that it doesn't work, and there is also a chance of relapse. We're not even thinking about that now. We're only thinking positive!)

I'm including Mac's comment from an email he sent last night on what he thinks is going on: "I'm doing fine, but I'm supposed to go in patient tomorrow to start my treatment. It's supposed to make me hairy. (It's horse serum) "

As you can see, parents hear, "this is an intense treatment schedule with various side effects" and what an 11 year old boy hears is "I'm going to be hairy and take horse serum." It pays to be young.

We found out today that Peter & Annie do not match, so a Bone Marrow transplant is not in the near future. Monday we will go to some consults and meet with different departments. Tuesday Mac will have his line put in so he can start the treatments on Wednesday. There are several types of medication that all have various side effects. We will be in the hospital 5 - 10 days initially and if everything goes well, he can be outpatient for 3 months. There are anticipated side effects that may require hospitalization, but hopefully those will be few. At 3 and 6 months, trends will be evaluated, and the course of action will be redefined as needed. The goal of the therapy is for his bone marrow to make adequate blood cells to protect him from infection and to be free from transfusions.

It looks like a long road ahead from where I'm standing right now. Please continue to keep us in your prayers.

Wednesday's appointment was the quickest yet. Mac did his time in the lab and his levels are ok, but they are scheduling more platelets for Friday. (Remember the other biology lesson about platelets - they don't last as long as RBC. And obviously his bone marrow is not producing many of them.) I don't think we'll have any real news - as far as matches, treatments, etc. - until Monday. But if we hear something Friday, we'll let you know.

It continues to rain - I think we are actually in Seattle. We managed to find an almost empty movie theatre and complete with mask and antibacterial wipes, we watched Harry Potter!

Thanks for the news from home and elsewhere! We love the mailroom visits!!

Just wanted to let you know that Monday went fine. Mac got his RBC transfusion as anticipated. He's handling everything very well. He said he's kind of like a vampire. Like I said before, this is our new normal... errands, relaxing, appointments, getting mail, more appointments, etc. We've found some good spots to hang out, like Mud Island, which is right on the Mississippi. We keep saying we could hop on a boat and land in River Ridge! It's been raining a lot here and I think it's much cooler than NO, not that that's hard to do.

This is kind of a boring entry. You know it's bad when you have to resort to the weather to take up space. As soon as we know anything new, we'll let you know!

Thanks for thinking of us!

Mac's appointment today was quick and simple. His blood levels are ok (and I mean that relatively) but they anticipate a RBC transfusion by Monday. He also met with a Child Life Specialist (that's what they call the people who communicate and play with the kids) who is helping him write a letter to Peter and Annie all about Aplastic Anemia and what is going on with him and what St. Jude's is like. They really have a great sibling support system here b/c they know that Mac's illness affects the whole family.

We're off until Monday. We'll find things to do around Memphis for the weekend. Mo is not good at sitting and waiting, so we'll be entertained I'm sure. There is a Dr. Seuss room here that has a quote on the wall that says "But it turns out allright you see, And I go back to being...me". During times of trouble, who better to quote than Dr. Seuss?!!

Thanks again for all the prayers and thoughts and notes and packages!

Not much new to report... Mac had his clinic visit and his platelet transfusion as predicited. (For your biology lesson of the day, platelets don't last as long as hemoglobin, that's why the platelets they gave him at Children's Hospital in NO are gone. The blood he got there is still maintaining. He got all this last Wednesday.) We also learned that Aplastic Anemia is in the category of "Bone Marrow Failure" diseases. I told them today that this was not PC. They are now labeling Mac as "Bone Marrow Challenged"!

Peter and Annie received their kits today and thanks to my sister Ana's efforts the blood was drawn and back to FedEx in about 2 hours. So now we wait some more. Mac's next check will be Friday morning.

We moved into a small apt. in the Ronald McDonald House. It's less than a mile from the hospital and has lots of amenities. We're keeping busy running errands, enjoying all the presents we've been receiving, and visiting with my friend Gail and her family. Thanks to all of you who have sent Mac packages. Today really was Christmas in July for him!

Keep up the praying and the positive vibes!! We are very thankful for the outpouring of support we've received!

Monday - July 20th

We went to our first visit in an outpatient status today. They drew blood from us (something that has to do with seeing what parts of the blood Mac got from me and what he got from Mo.) They took blood from Mac to check his levels as well as do further testing. As I said earlier we are waiting and watching. We are waiting on several lab results (in most cases AA is a situation where the patient’s immune system is reacting against itself but there can also be a couple of other triggers that need to be ruled out); we are waiting on Peter and Annie’s kits to be received to check their HLA type, and we are watching to see how his body responds. (This is where all those small miracles can happen… his bone marrow may spontaneously start responding again! Doubtful but not impossible. Another small miracle to pray for: there is only a 25% chance that Peter or Annie will match and be the donor – I didn’t realize that until today.) His bone marrow is still producing white blood cells, but barely. That is not something that can be transfused so if it goes lower they may have to start him on a medicine that helps spur on the development of WBC. On Wednesday they are checking him again, and they are anticipating him needing another transfusion of platelets.

That’s the biology class for now. As for us, we are doing fine. St. Jude’s has a philosophy of trying to treat as many people as possible in an outpatient status (with regular appointments in the clinic) so these kids can have somewhat of a normal life. Not normal as I defined it a week ago, but a new normal! (Wasn’t that the post Katrina New Orleans catch phrase?!) We are still at the Grizzly hotel and we will be moved sometime this week. Unfortunately, Aplastic Anemia is very rare (only about 3 of every 1million people in the US get it each year), so there is no package-deal treatment protocol on hand; one will be written specifically for Mac. The reason I mention this is that housing is provided as protocol dictates (short term – Grizzly Hotel; medium stays – Ronald McDonald House; longer term – Target Apartments.) We are a family without a protocol for two weeks and they don’t want to move us twice so they’re just going to send us somewhere this week and that is where we’ll most likely stay. The options seem fine and we are thankful for the whole program, so it’s all good with us!

Bonnie Hatrel is looking into setting up a Blood Drive in Mac’s honor. As I have learned, this will not directly benefit Mac unless you drive your little self up to St. Judes to donate. But giving blood is a great thing to do and if the coffers here get a little low, they are looking to cities like New Orleans and Houston to help them out. If the country starts to experience a shortage, that’s a bad thing. As for Bone Marrow matching, you can tell them when they are drawing blood that you’d like to consider being a Bone Marrow Donor and they will send a little part of your donation out for testing and typing. There is also a mouth swab test, but you’ll have to ask the blood people about that option. Maybe someone in the Ridge matches Mac and can save him!! We’ll make you casseroles and mow your lawn forever in that case!!!

We shouldn’t have much to report till Wednesday and I have a feeling it will be more of the Biology & Housing talk. Mac is doing fine and tolerating all this one on one time with his parents – he’s the one who used to fly under the radar and do his own thing. This is the calm before the storm so we are just trying to save our energy!! Keep praying for small miracles! We are very grateful to you all for caring!

Sunday - July 19th

Thanks for all of the comments and prayers. Something a lot of you have been asking about is blood donation and Bone Marrow matching. Here is our simple, non medical understanding of what is needed: Mac is an O+ (that is also my type.) If I or anyone else donates, it will not necessarily make it to him. Of course donating blood is a wonderful thing to do and just by being in the hospital I see what a valuable asset blood is – something taken for granted in everyday life (St. Judes uses an average of 10,000 units a year). The same goes for Bone Marrow donors; apparently it’s a simple blood test and getting your name on a list somewhere that you may or may not be called up for. But it’s an incredible thing to do if it could save someone’s life. In Mac’s case, they are looking for as close to an exact match as possible (Peter or Annie), but if they don’t match and drug therapies are not doing their job, we may go to a close match (from a stranger) in about a year. That being said, there are other cases where exact matches may not be as important so becoming a possible donor is a nice thing to do. I hope I’m getting my point across… we can’t really tag anything specifically for Mac, but someone somewhere did their part a while ago and it has benefitted us at this time. So, if you’re in the mood to do something positive and are physically able, please dontate blood and we’ll look more into the Bone Marrow donor info and fill you in on what we find out.

A lot of you have asked about lawn mowing. Right now, the Latham’s have agreed to mow our lawn so if anyone wants to help, please speak with them. Peter and Annie are up in Alexandria with Barb’s Mom and have lots of family up there with them. We will let you know if anything changes.

Mac likes to get emails from his friends (especially jokes), his email is macattack.carr@gmail.com.

We’re taking it easy this weekend and want to thank everyone for their thoughts and prayers.

First Update

After a whirlwind 3 days, we find ourselves at St. Jude’s Research Hospital in Memphis. Mac (11) has been diagnosed with severe Aplastic Anemia. This is not leukemia, but it is a serious disease where his bone marrow is failing to produce all three types of blood cells he needs. We arrived at St. Judes Wednesday morning (at 2am). They did the bone marrow aspiration Thursday and we got the results today. We have the weekend off for some R & R. Monday, Mo & I have to go get some bloodwork done and Mac has to have his checked. He will have his checked @ every 4 days to keep track of his numbers. There are still some lab results that need to be received so we have a 10 - 14 day window of maintaining the status quo. Unlike Leukemia, this a slow wait & watch program. After all results have been processed, they'll come up with a plan. A) Bone Marrow Transplant (if Peter or Annie are exact matches) along with drug treatment or B) Drug treatment only for about a year and if not working, go to a BMT that is not an exact match. We're looking at 1 1/2 years of on & off treatments at various times. I'm praying one of the kids match b/c that seems like it provides the best outlook.

We are staying at the Grizzly Hotel for the next few days but will probably move to the longer term apartments next week.

Mac is in good spirits and he told me tonight, “is it kind of weird that I’ve been real healthy for 11 years and now I have this disease?” I said “yes, but…” and he finished my sentence with “that’s life, right?” That pretty much sums it up!