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.