Day 56 July 31, 2009

Today marked 66 days at Sloan and we left to head to the Ronald McDonald house. Cody was up at the crack of dawn. On a typical day at Sloan, the fellow, Dr. Gearing would come in and wake us and ask how our night was. Well, today we were awake. He came in and talked to us and then handed Cody a card and some of his favorite candy. He is a sweet guy and before he left Cody asked for his email address. He is about 28 years old and really connected with Cody. Just one of the amazing people we connected with there. Cody ate his breakfast and we waited for the discharge papers. Cody asked everyone that walked in if we could leave including the cleaning girls. We finally walked out around 2:15. We hailed a cab and Cody was thrilled. He sat very quietly in the car but I knew he was happy but also scared. We checked in and he seemed much better. Lots of medicines and supplies arrived. A good friend from work, Kate Schmitt came and brought us some goodies and hung out with us. It was nice to have her and helpful. We waited for the evening nurse to come and help me hook up some meds to his IV and I disconnected one already myself and will do the other one in the morning. There is a lot to do for sure. I am nervous but I know that we will do fine. As I write this, Cody is sound asleep and snoring. We head back to the clinic on Sunday and then again on Tuesday. Looking forward to this phase of Cody's recovery. You realize just how lucky you are. I talked with a mom who I have seen at the hospital and she and her son were released yesterday. He has chronic leukemia and was at Sloan since January. Makes our 2 months seem like nothing.

Our 2nd phase has begun and we are ready for it!!!

Day 55 July 30, 2009

Thursday-Very busy day here in Room 924. Cody and I are preparing for the big move tomorrow. We were retrained in all the diabetes stuff because he has that again from the steroids. We ordered all the medicines to take with us and got all the dressing changing kits and IV flushes. He had a good day, worked out with pt and took a shower without any incidences. He ate breakfast with me again and had some ice cream. He made a few sarcastic remarks today and even played XBox Live and talked with a few friends and even Casey. He made a phone call to Grandpa Pete and Grandma Bonnie and even pretended to me crying at first. My stepmom thought it was really me!

I have the room at Ronald house and got our things there. If it is nice tomorrow, he wants me to wheel him there in a wheelchair which I can do. Hopefully the weather will cooperate. If not, we cab it. Wish us a night of uneventful sleep and an even better day tomorrow! Thanks!!!!

Day 54 July 29, 2009

Wednesday-Today was the first day Cody and I actually ate breakfast together in over 2 months. He ate a little bit of a bagel but it was something and almost made me get teary eyed.

We are preparing for the discharge so there is lots for me to learn. I learned how to the dressing change at the beginning of this week and today learned about how to hook up his IV nutrition bag. We will go home with that for a little while. He had an xray of his chest to make sure they lumen, the lines are in place and also an xray of his foot. We did not walk today because he is having some pain in his heel. All were clear, everything in place. We are still waiting to hear back on the test for the HHV 6 virus which worries me but hopefully it is negative. I am taking a trip to Bed, Bath and Beyond to get some pillows and mattress covers so he will be protected that way once we are at the Ronald House. I hope to get there tomorrow so I can do my own cleaning before he goes. If the weather is nice on Friday, I might just wheel him there in a wheelchair.

He is anxious to get out of here. I could stay here a week longer if I knew I was going home but I think they want to see us on our own and close by so we will do this first.

Day 53 July 28, 2009

Tuesday-Cody had a good day today. He is trying to be more self sufficient in the room. He gets up to change the videos, etc. He sometimes tries to do too much when I am not in the room. He is sleeping better and eating snacks (loves his salt and vinegar chips) and ice cream.

Today we spoke with the drs and they are watching a few things but it looks like we may go to Ronald McDonald house on Friday. There are some tests that are going to be redone because of some things slightly detected which scares me but since Cody is doing so well they are ok for now. I am a bit scared but hopefully things will work out.

Today I joined the millions and became a bone marrow donor and also donated blood. It was amazing to see the people there donating blood and platelets. Next time I will do platelets. I encourage everyone to do it. Please pass the word on to pregnant friends and encourage them to donate their umbilical cords. It is my understanding that not all hospitals are able to store them so clear that up ahead of time. It is a terrible thing to waste and not one, but two units were used for Cody's transplant and one of them saved his life.

Day 52 July 27, 2009

Monday- Two months ago today we came to Sloan. I cannot believe we have been here that long. I always knew we would be here for at least 2 months. Cody got a good night of sleep. He was pretty pooped after his day of working out. He got up and ate ice cream for breakfast! He ordered lunch, chicken fingers and fries. I had to go get the buffalo sauce and he ate a few bites. Works for me! He is eating some salt and vinegar cracker things and so far, he is holding everything down. He is drinking too!! He got two units of blood today and his IVIG which is the immunity concoction of plasma blood products for 20, 000 people. He gets it quite frequently and it costs between $3000-$10,000 per infusion. Unbelievable. http://www.cidpusa.org/P/ivig.htm

Day 51 July 26, 2009

Sunday- I am sore! We did a lot of laps today! At one point, we got back to the room and Cody was jogging in place and using the resistance bands to work out his arms. I am so proud of him. He does not like the weakness he feels and he just stares at his changed body and face. He is doing well and today was the first day that I felt "ya know, we can do this at home, we will be fine there." I think I feel good about the move this week.

Day 50 July 25, 2009

Saturday- 50 days since transplant! Cody had a great day. Each day I notice something small but it tells me he is improving. Today we walked a LOT! We went to the fish tank in the clinic 2x and we walked the halls about 4 times. He is doing well with it. He ate ice cream 3 times but eating 5-6 bites each time and he is holding it down. He moved from the lemon ices to oreo cookies and cream bars. We talked a lot today too. I think he is trying to feel 'normal'. He put on his sneakers and tied them all by himself. He got up to switch the movies, etc. It is almost like he is saying, I am done and I am back. I can do this. He gave me a huge hug too. He is such a great boy with this amazing spirit now. Everyone will get to see this and soon!

I talked to the doctor on call this weekend and she is the one that orchestrated his transplant. Her name is Dr. Kobos. Cody said he remembered her and she is a sweetheart. We talked a lot about Cody's mental issues too. She wants the psychiatrist to observe him a bit. Usually it is just me telling her about him but Dr. Kobos wants her to spend some time with Cody.

My friend, Gregg from high school was on Long Island for a wedding this weekend. He came in to the city yesterday with his two sons and popped up to see Cody. Cody allowed him and it was good, we were walking so he walked with us. He was so glad to see Cody. I know this is not the best place for visitors but it is always nice to see a familiar face, believe me. I have made some great friends here and I know I will be in touch with them when we leave. Such special people to do this job here.

Day 49 July 24, 2009

Friday- We like these quiet days without much to report. Cody ended the night last night doing a total of 10 laps! He even put his running shoes on and jogged a few steps with the doctor.

I did my victory dance today when he asked to eat ice cream. He ate 5 bites of an ice cream bar and I am so happy to know he will actually eat something.

We watched a lot of movies, actually the same ones. He got a massage today from Rocco. He liked it. A martial arts guys came and did some mediation/breathing with him too. I thought that would be good with his anxiety and he did it for a few minutes.

We relaxed most of the day. I am trying not to get so excited but we could relocate to the Ronald McDonald house on Tuesday or Wednesday. There is a culture that came back a bit positive for a fungus so waiting on a 2nd one to come in Monday or Tuesday. The doctor does not think it is anything so just waiting. Lots to do to get ready.

Day 48 July 23, 2009

Thursday-Cody did not sleep too well. He woke up at 4 am and that was it for the night. We had a lot of visitors today and said goodbye to Roy and Veronica. He did well with his visitors. He seemed to be conversing more and woke up asking the nurse if her shoes were comfortable. It brought a tear to my eye! Such a good boy! He conversed with his visitors but it was limited. He could only take so much from his visitors. Maybe a bit of a sensory overload. I am waiting to speak to neurology about a few things. I did speak to the psychiatrist and got some questions answered there. It is hard to see the behaviors in your child that for some long, you have observed in other children. Very hard. Thank goodness Cody's are reversible. I do not feel that everything will come back to normal but it might.

He was anxious to walk and did a total of 10 laps! He is ready to go!!

Day 47 July 22, 2009

Wednesday-Well, today was a sad day. We waited all day for Casey to come visit but he was busy in Chinatown. When he did come, it was sad because we had an emotional (for me of course) goodbye. He leaves to head back to GA tomorrow and then his deployment at the end of August. I am not sure Cody knows this or remembers but he left saying he would see us at Christmas. I know it was very hard for him to see his brother like this but he is still his brother. I was hoping for more visitation with him but he is married and has that family too.

Cody was anxious to get out of the room today. Can you blame him?? So we got to walk in the evening. He did three laps on the floor and one more in a wheelchair. He was trying to stay out as long as we would let him. He did well and wants to do more tomorrow! One step closer to getting us out!

Cody looks better and is conversing a little more. He even allowed us to take a few pictures and he posed for some funny ones for me. I do victory dances all day!! It's the little things.

Day 46 July 21, 2009

Tuesday-Another quiet day and I will take tons of those. Cody had a pretty good day. I am trying to get him to eat something, just a bite of something but he has no interest. He drinks a little water and that is about it. We are working on it.

Uncle Roy visited this morning but not for long. I think that it is hard for most people to see Cody like this and also for I know it is hard for Cody. He feels bad for feeling bad. I knows he is not himself. Today he was on facebook and he did not recognize someone. He knew he knew them but did not know how. This is scary and frustrating. I talked to him about it so he would know this is ok and that it will come back but I think it scares him, understandable so. He is into playing cards with me. I showed him how to play Crazy 8's and that is what we play, lots of it.

We had a CAT scan this evening. The doctors want to check to make sure there is not anything hiding. Cody was a little anxious going into that too because of the MRI experience. He kept making sure that it was not the loud one. He did it, no problem. We get the results in the morning.

His dad came up later last night so I was able to go have a nice dinner with my brother, sister in law and my nephews. It was good to get out and to visit with them. I wish they lived closer.

Day 45 July 20 2009

Monday- I think I did some counting wrong. Today makes 55 days that we are here. If anyone remembers, I said we would be here for 2 months and that is approaching rapidly. We talked with the drs this morning and are hoping to go home by the end of the week if all goes well and nothing develops from this fever. (Say a little extra prayer for us!) The drs asked if I was comfortable going home with the IV fluids and the IV nutrition. I said if people do it, then sure. I think it will be easier to get him home and eating. I can make him what he wants. We are both sick of the food here and he did not really even eat it much. I feel better about it that way. So hopefully we will be looking forward to our home by the end of the week.

Well, we had a nice visit with Casey and Nicole and then the Bevell's- my brother's family. We were even able to get my nephews up here to say hi to Cody. Cody did pretty well today other than the fever. The fever could change our discharge plans.

The discharge plans have changed. If and when we are able to leave, not sure if it is this Friday, we will not be going home but to the Ronald McDonald house. Our doctor just does not feel we are close enough in case of an emergency. I would not feel comfortable going to another hospital and this is where we need to be. I was feeling comfortable going home and having my neighbors, Craig and Sue next door and now I am nervous about not having anyone with me. But we will do it. I will keep you posted.

Day 44 July 19, 2009

Sunday-another quiet day for us but it was good. Cody is slowly coming back and responding more. I have been very scared but I feel it will all come back eventually. His counts are great but that could change once we taper off the boost.

During the night (Sunday night), he developed a fever. We do not know if anything new is growing or if it is from the earplugs he is not using. He is kinda being impulsive with them and obsessing a little about them but he is not biting his lip as much. I am worried about the gap in his lip and wonder if it will be normal again. Guess plastic surgery could fix it if we needed to somewhere down the line. He did a number on it.

He has been resting a lot and it is ok by me but it did affect his sleeping. He is getting visitors tomorrow, Casey and Nicole are coming and Uncle Roy and family will be here in the afternoon.

We are looking forward to that.

Day 43 July 18, 2009

Saturday- A quiet morning here after a no so good night. For some reason, Cody was vomiting a few times. It looks like it could be mucus from the mucositis so not too worried about it other than him being uncomfortable. It is 10:15 and he is still sleeping. This feels like the old days of him sleeping until 12-1.

Today was good. I know he is improving mentally because he played 5 card games with me. This past week, we barely got through one. He is talking more. He is still sleeping a lot but he is coming back slowly but surely. I think he was calm and quiet today because it is quiet here on weekends. Not a lot of doctor visits and the place is generally quiet. Right now, he prefers a more quiet and relaxed atmosphere.

Day 42 July 17, 2009

Friday-I was surprised but Cody had a good night of sleep without any help other than his one medicine for that. No extra needed. He fell asleep by himself and rather early and now he is up early but trying to fall back asleep. He wanted to do his stretches that he did with physical therapy yesterday. I am still trying to get him to eat something solid other than swedish fish or sour patch kids but not working just yet. He did try a bit of pasta but that did not cut it either. It came back up. He worked out with pt today and slept a lot. Guess he needed to catch up.

A different doctor is on service this week. He came in saying his middle name is 'discharge'. We can deal with that. We are working toward a discharge plan for next week. My brother Roy and his wife and kids are coming Monday, Tuesday and Wednesday. We booked them a room in the city and they will come visit us when Cody is up for it. I do know that with Cody's mental state, he gets anxious easily and having a lot of visitors here makes that happen. So we will do it in shifts. Casey and Nicole are still here and will be up also on Monday.

So keep the good karma coming and wish for us to get home this week. We will have to go home on IV fluids and with a nurse coming every day but we can do it....I am happy!

Day 41 July 16, 2009

Thursday-The night was ok and without the medicine that calms him. We did take Benadryl at one point. The MRI was successful. One side of his brain is better and the other side is not. I have not spoken to neurology myself or the radiologist but I am told it is a good sign. He is still on the anti -viral but the virus is not detected in his blood. I spoke with the psychiatrist because as a teacher, I notice every behavior and when it occurs. When Casey and Nicole were here, he started with the scratching and lip biting. While waiting for the MRI, he was so anxious and sat every way he could in the wheelchair. I am concerned about his 'flat' personality. I can get him to play cards and he will smile for me, but he does not light up for anything. We are giving him some zoloft for depression now. That will take a week to get into his system. So maybe that will help him.

Day 40 July 15, 2009

Cody is on a drug, anti viral for that horrible HHV virus. It was supposed to be for 14 days but Infectious Disease wants it for 21 days. He is scheduled for the MRI with anesthesia for tomorrow. We are weaning him from some of the steroids that he was put back on. Today Casey and Nicole came along with her parents. A cousin from PA came too. Honestly it was too much for Cody. I noticed his scratching and then he began biting his lip. He was never like this and I hope we get past this too. He was given the anti psychotic, at a low dose and it does work. Only later do I find out that we are stopping that one because it is contributing to his low heart rate. I am worried about the night without it, but they assure we can give him others. He is a tall and strong boy and I just worry that I might now be able to handle him when he gets in a mood. Today I stepped out and came back and he has his shirt off and his bandage to his line. These kinds of things I worry about. He seemed glad to see his brother although it is hard to get a smile out of him. But I think just hearing him talk and knowing he is here is good for him.

Day 39 July 14, 2009

Tuesday-I am bit behind since my computer charger broke. Let me back track a little.

I think Cody felt a little down today. He did eat ice cream and he played cards with me. His heart rate is still slow due to medication so we are juggling some here and there. He was up a bit at night but overall still doing the same. He tells me he is a tiny bit better each day. His counts are coming in so nicely but he is also getting a boost for that. We'll see what happens when we decrease it.

Day 38 July 13, 2009

Monday- Today was a quiet day. Cody had an EKG first thing. Some of the medicines can cause a lower heart rate and may need to be adjusted as was his case. He got a good night of sleep. We have the magic potion. I had a long discussion with the neurologist. As a teacher, I see all these behaviors and it freaks me a little. I know his mental state is not the same and I am told it will all come back. Could take weeks and/or months. Each day I see a little improvement. It is difficult to see. I keep thinking of all the parents that deal with these mental issues each day and I feel so awful for them. In some ways, this is harder than the big issue here. His counts are still continuing to come up and we are pleased with it. He continues to need platelets but I am told those come in last. We talked about coming home which is in the near future and we are so looking forward to that.

Day 38 July 12, 2009

Sunday- after a night of not sleeping, we finally started our day around 8:30. It is really quiet here on weekends. I just wish the night was quiet and we could have slept. I am convinced the steroids he is getting are making him stay awake. He looks so tired too.

Today Casey and Nicole visited! Casey got an early promotion to Specialist. I am so proud of him. He and Nicole seem happy. He will be here for 2 weeks and it will be nice to have them.

Cody's white blood count is 4.3 today. That is a big jump, thanks to the steroids. We'll take it.

He is still kinda quiet and we have increased one of the meds for his mental state. It does help with his lip biting and itching and hoping it helps with his sleeping tonight. He has to be tired because I know I am. I am so hoping for a better night. Tomorrow or Tuesday we are doing another MRI to determine whether or not we can stop the anti-viral medicine.

Day 37 July 11, 2009

Saturday- Quiet day and Cody was up all day. He tried to sleep but just could not. And the night was not any better. He did not sleep. We tried everything too. I will be anxious to speak to the dr on Sunday to see what we can do. He did get out and walk today and even went to sit in another room and we played a game. He is allowed out if not the floor is not crowded and he wears gown, gloves and mask. He is anxious to get out of here for sure.

Day 36 July 10, 2009

Friday-After a night of no sleep, I thought we would have had some extra naps today but nothing. Cody tried but just could not sleep. He is getting steroids again so that played a part. We decided to try a bath this time since the shower was a huge problem but that turned out to be a nightmare too. Sponge baths for Cody.

I spoke in detail with the neurologist and we talked about medication. I also met a different psychiatrist and we have a new plan. He introduced a new drug on a 'as needed' basis and we will continue with the original one. Cody got the new one around 3 but did not sleep although the itching and lip biting seems to lessen considerably. He ended up falling asleep around 6:30. He woke up here and there but slept pretty well.

Day 35 July 9, 2009

Thursday-

I spent a lot of today talking with the doctors about Cody's mental state. I am so worried. The neurologist said that Cody's damage in his brain is in the same area that gets affected when one becomes intoxicated. This explains some of his behaviors and inhibition. It does not explain his lip biting and scratching that has become obsessive. Not sure what that stems from or if he is anxious or upset or anything. There is a new psychiatrist on call for the next few days so maybe he will have some insight. He continues to need blood and platelets and this, we are told, is normal. The counts continue to stay in place, jumping up a little here and there.

Day 34 July 8, 2009

Today we are exhausted. There was not much sleep last night. Cody was restless and could not get comfortable. Finally around 2 I think, we fell asleep. We learned this morning that there is an infection in his line. We are waiting to see if we have to remove his lines and start over there. Let's hope not, but I want to know the infection is being taken care of. Some meds/antibiotics are being switched around and once the exact type of bacteria is diagnosed, then we will do what we need to do. I am getting frustrated for sure, and ready to go home.

Day 33, July 7, 2009

It is good to be back in our old room, but takes a while to get used to sleeping here. When I got back from dinner, the nurse told me that Cody has a fever. I almost vomited up my dinner. I start to feel like how much more can I take? It was a rough night.

Grandpa left us today around 12. It was nice to have him here. I know it is hard for him to see but I think in a way, it was good for him to see.

Cody continues to eat TONS of lemon ices and I have still mental issues. I have asked for a sedative for him at night but neurology does not want this. Cody took a shower today and he had an issue and it was a result from the sedative. It is a juggling act for sure.

Day 32 July 6, 2009

We finally left the Pediatric Observation Unit this afternoon. It was about time. We got settled in and I think Cody feels better. It was good to have my dad here for 'the move'. I was able to get away tonight to have dinner with dad. Cody's uncle Jim came to sit here for an hour. It was nice to get out and to spend some time with my dad. I am still concerned about Cody's mental state and have been working and encouraging him to respond and interact more. It is tough. He is a typical 16 year old but also a stubborn one. I think he is tired of being here too.

The counts are coming in. His ANC is .08 and white blood count is 1.2. Slowly but surely.

Day 31 July 5, 2009

Sunday-Today was a good day. Cody was up and walked to see the fish again. He says he is a little bit better. His ANC (absolute neutrophil count) is coming in. This is the infection fighting white cells that come in first. We are very happy with this. They actually came in Saturday which may have been why he felt so good and walked around a bit more than ever. All of these counts fluctuate but the fact that they have made it to his peripheral blood is a good sign.

We played a game with grandpa today and Cody did well. I think he knows he is beginning to pick up. We talked about going home too although that will not happen for maybe 2 weeks is my guess.

Day 30 July 4, 2009

Our doctor is away this weekend but the doctor on call came to talk to me. We had stopped one of the antirejection meds but because of the level, it was technically still in his system. She felt since he was doing so well that we could re introduce it. That happened last night. This morning at 6 he woke up telling me he needed the nurse. He then told her that she stole his car and continued with a story about this. So the confusion was there again. The medicine was stopped immediately and we started something new today. Well, it is very quiet here at Sloan today. So quiet that the day clinic is closed. We are about 10 steps away from it here in the unit and our nurse had a great idea. She said we could go walk there. There is a nice salt water fish tank and we could look at it. It was a great idea. So we suited Cody up in gown, gloves and a mask and took a stroll. He did so well for not walking in like 30 days. I took him back in the afternoon and there is a couch in front of the tank and he and I just lounged there for about 20 minutes. He seemed so relaxed. Later when my dad came, we went back a 3rd time and just looked at the fish. He bite a whole in his lip so that was the excitement of the day. Hard to get it to stop bleeding. We gave him platelets and finally it did stop. Now I just have to watch him. I hope everyone enjoyed their 4th.

Day 29 July 3, 2009

I cannot believe we have been here 39 days. We were thinking we would be so bored here.

Today was an ok today. I do not like that Cody is so lethargic like. He is kinda like a zombie, speaking very little and not really interacting. He is up and sat in the chair and ate an ice. His white blood count is 1000!!! That is amazing and so good. The EEG did not show any seizures so they are being regulated with the medication. This is what is making him so groggy. Maybe he will sleep better tonight. He still has the EEG hooked up and that comes off tomorrow.

The doctors are convinced that this was all brought on by one of the anti rejection meds and not the other. So they are slowly introducing it again tonight and hopefully there will not be any changes. I am hoping that this is the home stretch! My dad comes tomorrow so maybe he is our good luck charm.

Day 28 July 2, 2009

Hi friends,

Today was a bit of a more relaxing day. We have learned about epilepsy and what it entails to keep it under control. We will follow up with a special doctor when we leave here. Apparently Cody has had epilepsy for a long time. This would explain the intensity of his illusions and odd behaviors over the years. I feel bad not detecting it and he has been seen by 2 nuerologists on Long Island and had two different MRI's. I am glad we have to under control and Cody can be assured that the behaviors will stop. We talked to lots of neurologists today and I was even video taped as I told the story of the his experiences. Today Cody was kinda quiet as the anti seizure medicine does that to you in the beginning. He ate a little ice and a purple ice pop but that was a bit too much. He is having another EEG overnight tonight so we can look for seizure activity.

I tell him everyday how strong and amazing he is and today and he now he knows he is. He is so sweet. There lots he wants to do when he gets out and he misses his dogs the most.

Actually I might too.

Day 27 July 1, 2009

This day goes down in my book as one of the worst days since hearing the awful diagnosis.

We did not sleep last night, as Cody got progressively worse with his confusion and amnesia. He got obsessive and persistent and he was talking to his phone without it being there. He would not let me lie down. We tried movies and every show on the tv but nothing could calm him. I was out with nurses letting them know that it was getting worse. It was so upsetting to watch. By 6 am, I was getting persistent. The neurologists and our doctor was paged. A repeat MRI was ordered for this morning. I spoke with several different doctors throughout the day. Cody made it through the MRI and there 3 neurologists waiting here in the room when we got back from the MRI. They said they saw something more in his brain and recommended a spinal and another EEG. I lost it at this point. Our doctor came in and was worried about a spinal due to Cody's low platelet count. This worried me to see her worried. We were getting settled in the room and Cody was having some trouble breathing so the nurse practicioner was here. He started to yawn, one after the other. Little did I know, but this was seizures. The EEG confirmed it. Our doctor returned a few hours later to tell us that this behavior is from the anti rejection drugs he is getting. He still has the virus but it did not go to his brain. The two drugs were causing the inflammation. We had a new plan to treat the seizures and introduce a new anti rejection drug from a different family of drugs. I cried again but I felt we could deal with this better than an infection in the brain. We would not have to do the spinal now.

I cannot begin to explain his behavior. He was adorable in it but totally confused and I hope he does not remember any of this. However, it is something I will never forget.

On a positive note, Cody's counts are coming in, slowly but surely. He ended the day being at .7.

We will take it!

day 26 June 30, 2009

Tuesday: Cody had the EEG last night and it was read this morning and revealed no seizure activity, thank goodness. His counts are .3-.4 and it is normal to fluctuate. Cody was able to do some PT with Vivian but it made him so tired. He did not sleep all that well so we are both a little cranky. The skin biopsy told us nothing more, either from medicine or graft vs host disease. The bone marrow biopsy showed lots of baby red blood cells and no leukemia! We were happy to hear that. Now just focusing on amnesia issues. We will do a repeat MRI later this week.