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.