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.