Saturday, June 21, 2014

Day +22 Exciting Day! Ryan got to breathe fresh air for the first time in a month.

Ryan's platelet count was 6 digits for the first time today  (114,000) and his ANC has climbed into the normal range for his age (2684).

The transplant team decided to slowly start weaning him off steroids. Also, there was talk about a possible discharge mid-next week. And... We unexpectedly received a 4-hour pass out of the hospital today!!!

The funny part is that we didn't know what to do at first. We have to avoid the general public, but we don't get access to our apartment until Monday. We ended up going with Grandma Terry and Grandma N to a nearby park. We had to take several precautions - Ryan had to be covered in sunscreen head to toe, he had to wear a hat, and he also had to wear a mask as he was wheeled through the hospital to avoid germs from anyone sick we might pass in the hallways. We took Purell, anti-bacterial hand wipes, and Clorox wipes. Most importantly, we had to make sure there was significant distance between Ryan and anyone else at the park (especially kids). It actually worked out.

My favorite part of the day was seeing Ryan get excited at the park and start running for a few seconds here and there. It is hard to believe that only five days ago he couldn't even stand up for more than a few seconds!

I am continually amazed at the miracles I keep witnessing. Every morning, the first thing I do is ask for a copy of Ryan's labs. I feel like a kid on Christmas morning who can't wait to open gifts. Then, I stare in amazement at the numbers I am seeing.

For a year now, the numbers on Ryan's labs always went down. It got to the point where I was really just interested in seeing his numbers so that I would know what type of blood product(s) to expect him to get that day, how long we would be at the clinic getting transfusions, and how careful we had to be that week to avoid hemorrhage and infection.

Ryan has had over 50 blood/platelet transfusions, each taking several hours. Today, it finally sank in that he may never need another one!

Thursday, June 19, 2014

Day +19 & Day +20 Increasing counts & Imaginary Parasites

As far as pain goes, each day has been incrementally better for Ryan.  He hasn't had any Morphine or Oxycodone since yesterday morning and today he walked a little bit.  It was even his idea; he didn't have to be bribed or coaxed into it.

In addition, today was the first day that all three types of blood cells showed increases on his labs. Today's counts:

Platelets: 65,000
Hematocrit: 30.2
ANC: 1665

With his ANC being over 500 for several consecutive days, his ability to take pills, and the fact that he is able to eat and drink some, he would have met the criteria for hospital discharge this week, IF he didn't have acute GVHD. With the GVHD we are not going anywhere just yet. The steroids will continue for the next 9 days and then, if they think the GVHD is under control, they will start to wean him off. If it does not get under control, I have no idea how long we will be here. At a minimum, I think we probably have two more weeks inpatient.

However, I have been asked to get our housing arrangements in order because, at some point soon, they will probably start giving us "passes" for a few hours out of the hospital and we will need to have a non-public (germ and virus free) place to go.

Being that we do not live within 15-30 minutes of the hospital (I wish), we need to stay in Seattle. Luckily, some transplant apartments that are run by the Ronald McDonald House opened up and I was able to go select one. I am not sure why, but I was picturing in my mind that they would be kind of run down, outdated and smell bad.  I was surprised that it is actually a fairly new building (11 years old). Also, in the last few weeks, they have been in the process of updating the open units, so I was able to pick out a 2-bedroom with new flooring, paint, and all new furniture donated by Lazy Boy. I will be moving some of our stuff over there next week, which should also make our room at the hospital feel a little less crowded. And, my car will no longer look like a homeless person is living in it. It currently has folded clothes for both of us stacked along the back seat, and I have been keeping stuff like cases of bottled water, extra toys, even a small trampoline of Ryan's in the back. I go out to the parking lot occasionally and grab whatever we need.

With the discontinuation of the pain meds, I had hoped that some of Ryan's itching would stop. Not so. In fact, he is still taking regular doses of both oral and IV anti-itch meds.  He doesn't know it, but I am also putting Aveeno anti-itch lotion on him. When we first arrived, the hospital initially gave us Eucerine lotion. Ryan let me put it on him once, but he didn't like that it made his skin feel greasy. With the skin GVHD, the doctors recommend lotion so that it is not aggravated by dry skin. Ryan absolutely refused to even let me put the Aveeno lotion on a small test area, so I had to resort to tricking him. The hospital gives us little travel size bottles of Johnson & Johnson baby wash. I emptied one of them out and filled it with the Lotion. He sits on the shower seat while we first wash him with the baby wash. By then, he is so busy shivering and complaining about being cold, that I can quickly put the lotion on as if it were body wash.  I think he might be starting to catch on, because today he noticed that I didn't rinse it off and was complaining that he felt slimy.

Unfortunately, the anti-itch meds seem to be losing their effectiveness.  That, coupled with a serious bout of "roid rage" after tonight's steroids were administered, made for a pretty unpleasant evening. Ryan's behavior toward the nurses and CNA's was horrible. He wouldn't cooperate when they were trying to take vitals and he was making really rude comments.  It is so embarrassing when he gets that way. I feel like the worst parent ever with my out of control child.  However, the nurses keep telling me that they see it all the time with kids on steroids.  I haven't worked up the nerve yet to say "yeah, but isn't my kid the worst you have seen?.." I'm not sure I want to know the answer.

He had a really bad itching episode tonight and was really upset that he couldn't have anymore anti-itch meds because it was too soon after the last dose. He was rolling around in bed and screamed "I am so itchy! This room is full of parasites!!!" Thankfully, his Benedryl and Zofran kicked in shortly after that and made him tired enough to fall asleep.

Tuesday, June 17, 2014

Day +18 A Little Better

Today was a little better than yesterday, but still a challenge. The Attending Physician this morning said that Ryan’s pain could be due to the steroids.  However, he must have the steroids for the GVHD.  The earlier you intervene with steroids, the better the outcome, and less chance that the GVHD will get worse or become a long term issue (chronic GVHD).  The good news is that if Ryan responds well, they could start tapering him off the steroids as early as next week.  In the meantime, it is a constant battle to try to get ahead of the pain and itching with Morphine, Oxycodone, and anti-itch drugs. It is quite the exercise in prediction and timing to keep him comfortable.

Another piece of good news is that Ryan’s ANC doubled again overnight and is now at 1288.  It is pretty impressive to see it go from zero to 1288 in only four days.  In addition, he has made a few platelets on his own as well, and his count has increased from 23,000 to 30,000 in the last few days.  His red cell count has decreased a little bit, but it is normal to have the white blood cells recover first and to have red cells and platelets lag behind.  I am pretty happy to see any movement with the platelet count this early and I am not yet concerned with the drop in the red count.

The “Art Cart” came around today and I picked out a wooden train kit with paints for Ryan.  I figured I would stash it away until he was feeling better (i.e., in his right mind), but to my surprise, when he saw it he said “I want to put that together now.”  With the steroids, I really didn’t think he would have the patience.  I was sure that there would be all sorts of issues with the project that would send him into a rage.

However, he agreed to get out of bed and sit with me on a mat on the floor to put it together.  There was no rage, but I did get scolded several times for not holding the paint right and not sitting the right way.  Apparently, he wanted my legs curled in a different direction for some reason.  I tried to accommodate his crazy request to avoid conflict, but one of my legs eventually fell asleep.  We did make it through most of the train project.  We are just a few wheels and some paint short of having it complete.  Maybe tomorrow…

Something finally made Ryan smile later in the day.  There is a guy that comes through the halls every few days standing on a floor cleaning machine (looks like a cross between a Segway and a Zamboni with a scrubber underneath it). He noticed that Ryan was watching him through the glass doors of our room so he drove over in front of us and did several “donuts” in front of us while waving to Ryan.  Ryan even did a courtesy wave back.

Monday, June 16, 2014

Day +17 Today was Really Tough

Ryan's rash is slightly better in appearance and his ANC was over 600 today! The bad part is that he is still itching like crazy at times - to the point where he thrashes around in bed screaming and crying "Itchy!" "Itchy!!!" At one point, I was trying to explain to him why he couldn't yet have another dose of IV anti-itch medicine and he looked me in the eyes with a miserable look and screamed "Why aren't you doing anything to help me?!?"

In addition, the pain behind his knees has gotten worse and now he also has the same type of pain inside his elbows. He could only stand for a few seconds today before he would start screaming and crying in pain. "Pain!" "Painful!" "My legs are killing me!!!!" Even sitting on the toilet and on the shower seat today was really painful for him.

To add insult to injury, the behavioral side effects of the steroids kicked in too. High dose steroids affect kids MUCH differently than adults. Ryan turns into a completely different kid. He basically was angry and verbally abusive to me all day and would have episodes of pure rage. Nothing I did was right or what he wanted, even when I had done EXACTLY what he just asked me to do. He even screamed at me "YOU SHOULD BE ABLE TO READ MY MIND!!!" (and he meant it.)

I can't blame him for being angry and lashing out, and the psycho behavior is the steroids talking. However, it is draining both physically and mentally for me. I was in tears by this evening. It is extremely upsetting to see him so uncomfortable and in pain (and blaming it all on me).

All day, no matter what I tried to do to help him, it just didn't, and his steroids told me how inadequate of a job I was doing. I finally agreed to let the nurse give him IV morphine because the Oxycodone wasn't doing much for his pain.

I started wondering things like "What if he can't walk right ever again?" and "What if he is in chronic pain for the rest of his life?" He even made a comment along the lines of "It's because of that man's cells inside me. We should put my cells back!"

I started to get caught up in the "what if's" but I quickly reminded myself of the advise I have received from other transplant parents to not look too far ahead and only take things a few hours at a time.

My day ended with the night shift nurse basically telling me that they can't be spending as much time helping with Ryan tonight because there are kids on this floor sicker than him.

We have had so many great nurses here, but there are a few we have run across that really need to work on their people skills!

Sunday, June 15, 2014

Day +16 Trying to Dodge Bullets

Another transplant mom recently used the following analogy while providing an update on her daughter's recovery after a second bone marrow transplant:

"I picture each BMT patient running down a battlefield dodging bullets the whole way. The bullets are liver failure, kidney failure, lung failure, heart damage, infection, bleeding, graft vs host, viruses, etc etc.  Some dodge every one, some get hit by many bullets but make it out the other side, and some get hit by just one and are not so lucky." - Connie Lee*

We had good news yesterday morning with the first signs that Ryan's new bone marrow is starting to engraft. This morning's neutrophil count was also impressive - it had more than doubled overnight.

With these first counts came an extremely itchy rash, fever, nausea, and pain in Ryan's legs, arms, and abdomen. All of those symptoms got worse last night, and by this morning, Ryan couldn't stand up for more than a few seconds due to the pain in his legs. This evening, the transplant team decided to start high dose steroids to combat Acute Graft Verses Host Disease (aGVHD).

GVHD results from an immune reaction after a bone marrow transplant. Immune cells in the bone marrow from the donor (the graft) recognize body tissues in the patient or host as “foreign.” Ryan is the foreign "host".

The resulting immune response is similar to the reaction against an infection. Most transplant patients have some GVHD at some point. GVHD can vary in severity, and different parts of the body can be affected. In severe cases, uncontrolled GVHD can be fatal.

There are two types of GVHD - acute (aGVHD) and chronic (cGVHD). Acute and chronic GVHD are caused by different mechanisms within the immune system and respond differently to treatment.

Acute GVHD usually begins during the first 100 days after a transplant, although it can begin later.  It affects the skin, stomach, intestines and liver.

Chronic GVHD usually begins more than 100 days after a transplant. It can affect the same organs that are affected by acute GVHD and also can affect connective tissue in the skin and joints, the mouth, esophagus and lungs, the glands that make saliva, and the glands that make tears (and for women, the vagina).

Here is my simplified explanation of where we are at:
Ryan's donor marrow graft is starting to come in strong and is pumping out cells that realize they are in a foreign host (Ryan), so they are attacking him. The steroids he started tonight should tell the new immune cells to calm the hell down, which will buy some time for them to get used to their new environment and realize the new host is actually a pretty nice guy and not an enemy.

We are hoping and praying that this is only a temporary, acute, GVHD and not a precursor of more permanent things to come.

*Thanks Connie and Kya Lee for sharing Kya's story in such a public manner to help spread awareness of Aplastic Anemia and Bone Marrow Transplantation.

Saturday, June 14, 2014


Each day, the nurse draws blood between midnight and 4:00 AM so that the doctors have the day's counts by the time they do rounds in the morning.

I suspected... Today is the first day I jumped out of bed at 5:30 AM and asked for a copy of Ryan's labs. I was pretty sure I would see some numbers.

A Neutrophil count is the first sign of engraftment. Ever since chemo destroyed his bone marrow, the daily labs have been displaying "NO DATA".

But today......

(Attached are yesterday's labs next to today's.)

Friday, June 13, 2014

Day +14 Keeping an Eye on a Rash

Ryan has had a rash over a majority of his body since last night. It is worse today and is raised in some areas. It also got really itchy right before bed and he was miserable and crying because it was bothering him so much. His temperature has also been up slightly, but is not considered too high at this point. This all could be a sign that he is in the process of engrafting, which should be anytime now.

However, it could also be the start of something bad like Engraftment Syndrome (ES) which has not been studied much in pediatric populations, but is generally associated with a higher rate of graft rejection and a higher mortality rate.

It could also be early Graft Versus Host Disease (GVHD). Ryan is the "host" and the "graft" is the donor marrow. In GVHD, the graft attacks the host, which can result in problems that range from minor skin issues to major organ failure.

I am going to assume it is just his body working to engraft the marrow.  But I will definitely have some questions for the team during rounds in the morning.

Thursday, June 12, 2014

Day +13 Freedom!

Released from isolation today and free to cruise the halls of the cancer unit.

This evening Ryan started getting a rash all over his body. The doctors are not too concerned about it just yet, but they will definitely be monitoring it closely.

Wednesday, June 11, 2014

Day +12 Itchy!

Ryan was less nauseous today but still only ate a few bites of food all day. The team has said that it is good that he is eating anything at all at this point because many kids do not and then require feeding tubes.

The theme of the day was itchiness! Ryan lost quite a bit of his remaining hair last night (his bed looked like a shedding dog had slept in it.) what's left of his hair is very short and prickly. I cuddled in bed with him to watch a movie this evening and we both ended up covered in it. Ryan was itching so much that they gave him an IV med similar to benedryl (he had just had IV benedryl too.) I wish they would have hooked me up with some too because I still feel itchy! I am thinking by morning there will not be much hair left to shed, if any.

I am hoping Ryan can be retested for C-Diff tomorrow. If it is negative this time, we may be out of isolation by Friday. (Please!!!!)

Tuesday, June 10, 2014

Day +11 Fatigue and Nausea

Ryan slept for about 10 hours last night, but when he woke up, he just laid in bed yawning and looking tired.  I asked him if he was sleepy and he nodded his head.  I was surprised because he normally will not admit when he is tired because he is afraid I will suggest a nap.  He was sleepy and nauseous all day long.

Today was also his last dose of Methotrexate, which seems to make him sick as well.  He got sick twice and then crashed at 7:00 PM.  I hope all the fatigue today means that his body is working hard to engraft his new bone marrow.

Monday, June 9, 2014

Day +8, Day +9, and Day +10 Freak Bleeding Accident & Shedding Like a Cat

Saturday, we had a little bit of a scare.  My mom was visiting and was helping Ryan look for something he lost in his bed.  I heard her say, “Ryan, what did you spill in your bed?”  I looked over and saw a bright red puddle on his sheets and realized “That’s blood!”  However, I couldn’t see where it was coming from.  It was all over the outside of his IV lines.  He generally has six lines hooked up at a time with all sorts of connections, so it took a little while to figure out where it was coming from.  I noticed one of the lines had blood inside of it and he wasn’t getting a blood transfusion. He should have only had stuff going into his body, not coming out.

When the nurse arrived to help, one of the line connections snapped off entirely in her hand.  Apparently it had been cracked for who knows how long and finally gave way.  With the loss of pressure in the line from his IV pump, and not having the line clamped in the “off” position, the Hickman Line catheter was draining blood directly from the major artery that it is threaded through.

It seems that this was just a freak accident, but I kept thinking about the fact that, if this had happened at night, he could have bled out for hours without us knowing.  Scary!

Leading up to transplant, I asked Ryan on several different occasions if he wanted to do something crazy with his hair before he lost it, like get a colored Mohawk or shave it all off.  He said “No, I want to shed it like a cat.” (He gets silly sometimes and likes to pretend he is a cat.)

I had expected some hair loss to start around Day +5; however, there were no signs of it.  I started wondering if he would be the rare case of someone with hair that didn’t fall out with chemo.  Around Day +6, I asked the Physician’s Assistant on the team “Is it strange that he doesn’t have any hair falling out yet?”  She looked at me with a smile and simply said “Day +9”.  Well, Day +9 rolled around on Sunday and when the team did rounds in the AM, there were still no signs of hair loss.  I started to worry that maybe the chemo hadn’t done everything it was supposed to do.  However, about 5 minutes after the team left the room, I noticed a few strands of hair on Ryan’s pillow. I ran my fingers through his hair and small strands of hair were left between my fingers.

Once again, I asked Ryan if he just wanted to shave it all off and he said “No, I don’t want to be bald.”  I said “Well, you know you are going to be bald, but it will grow back.” He then said that he didn’t want any visitors after he went bald because he didn’t want people to see him.  I was surprised that it all of the sudden it seemed to be that big of a deal to him, because when we talked about it before, he seemed fairly okay with it.

Maybe he associates being bald, with being a baby.  I am not sure, but later in the day, we talked about how there are men that shave their head on purpose because they like the way it looks and that there are even athletes and celebrities that are bald.  I found some pictures online of Vin Diesel and Michael Jordan to show him, but I am not sure if it helped.

By this afternoon, Ryan was complaining that hair kept falling in his face and itching. I could pull fairly large clumps of hair from his head.  I suggested that we at least cut it shorter with some scissors and he agreed to that.

I wanted him to feel like he had some level of control over the situation, so I let him cut what he wanted to with the scissors and then I cut the rest as short as I could.  I told him that this would probably be the worst haircut he ever gets and that he shouldn’t tip me.

Part way through the haircut he checked himself out in the mirror and said “Hey, I look pretty good bald.” I am hoping tomorrow he will realize it will feel a lot better if he just shaves the rest off.

Friday, June 6, 2014

Day +7 Homesick already, with at least 93 days to go...

The first few weeks were exciting, but now we just avoid germs while we watch and wait for Ryan's new bone marrow to engraft (set up shop in his bones and start making new cells). Things are kind of boring right now, which in the transplant world is exactly where you want to be. You don't want any excitement (unless it is counts going up), and you definitely don't want to be "interesting" to anyone in the medical community. We did all that pre-transplant and now we want to be textbook.

Ryan and I are both going a little stir crazy being in isolation. At least I can go off the unit to grab food or get some fresh air. Ryan is completely confined to his room. Since I am technically in isolation with Ryan, I can't use any of the common areas on the cancer unit. Therefore, I am not even allowed to get ice and water for us, or use the microwave. We have to ask for anything we need - water, ice, towels, bedding, cups, etc.  The nurses are really busy and I hate having to call them every time we need something. I have resorted to hoarding clean towels so that we don't run out. They came in handy tonight when I accidentally sent a bucket of melting ice flying across the room while trying to get to the phone.

I am also feeling way more guilty the last few days about trying to balance all of this with my work. There are things going on at work right now that I would really like to be in person for and more directly involved with. I have been staying connected with people online and over the phone, but it would be nice to be in person occasionally. If Ryan continues to do well, I may see if I can schedule a couple hours next week, when Ryan has someone else with him, where I can pop into the office for awhile. With Ryan being awake more and feeling better, he has caught on to the fact that I am doing some work remotely. In the past 24 hours I have been "busted" three times. All of the sudden I will hear "Mom! You're not watching the movie with me!"

Today Ryan's nurse commented on how bruised Ryan is on the left side of his chest, and all the way up his neck. It is where they removed his port and placed the Hickman line. She said "I heard he bled ALOT in surgery." Um, What??? That was news to me. Nobody told me. The surgeon came out and talked with me while Ryan was in recovery and didn't mention anything about it. However, Ryan was in recovery for a really long time, to the point where I got worried and asked the receptionist to call and get an update. Loss of blood during surgery definitely would explain why his hematocrit dropped from 26 to 21 overnight and he needed a red blood transfusion the following day for the first time in almost four months.

Thursday, June 5, 2014

Day +4, Day +5 & Day +6 A Little Rough, but Doing Better

Day + 4, Ryan was still sick off and on and rested quite a bit. He didn’t eat or drink a thing. Everyone thought “Here we go; he is not going to be eating for awhile.” So, we decided to increase the number of anti-nausea medications he is on and the frequency in which he gets them. The team advised that the only real down side is that they can make him sleepy. I figure it is okay for him to sleep and rest more right now. I would rather he be comfortable than sick to his stomach and miserable. In fact, he slept so much that I was able to sneak away for about 20 minutes and get a free neck and back massage down the hall. (There are massage therapists that come in twice a week for parents and caregivers.) It was a really nice quick break. I must have been really tense because I still feel really sore from it!

Day +5 (yesterday), No vomiting or GI issues! At all!!! Ryan seemed to get some of his appetite back and ate small amounts of some very random things: a Starbucks chocolate croissant (his current go-to comfort food), snap peas and some peanuts. He even had some milk and commented that it was good and tasted like “normal” milk again. The nutritionist mentioned that he was able to eat about 25% of his calorie requirement for the day, which is really good. He also had more energy and played some games with the Occupational and Physical Therapists.

Day +6, Today Ryan has continued to eat and drink a bit and is expanding his interest in trying more foods. (I was worried that he would be on an indefinite diet of chocolate croissants.) He ate a few silver dollar pancakes, a small piece of focaccia bread, about 1/8 of a bagel with cream cheese and has requested a corn dog and chocolate chip cookie for dinner. A hot dog has sounded good to him for the last few days but he wouldn’t eat one because he was afraid that if he threw it up he wouldn’t like them ever again. (I am not sure that would be a bad thing.)

In addition, we have noticed that signs of Mucositis seemed to disappear and we haven’t seen any signs of mouth sores so far. However, Methotrexate is given at days +1, +3, +6 & +11 to try to prevent GVHD and it can cause mouth sores. He is receiving the third dose today and I am crossing my fingers that he doesn’t develop them. However, there is a pretty high chance he will. Most transplant patients get them. If so, I anticipate the progress we have made with eating will come to a halt.

The doctors keep commenting on how well he is doing for where he is in the process. It is still really early, but one of the doctors commented that “if he is doing this good right now, it is a pretty good sign.”

I am glad the doctors are happy with his progress, but I know there is still a lot that can go wrong, so I don’t want to get too far ahead of ourselves and I remain guarded. The first major milestone for a BMT patient is +100 days. I recently saw a BMT patient use the analogy that reaching +100 is like reaching base camp at Mt. Everest. There is still a significant climb even after that. For us, we just arrived at the bottom of the mountain, but we are feeling positive about the journey ahead.

Note: The attached note was written to Ryan from his cousin AJ. It is just so cute and from the heart that I had to share it.

Monday, June 2, 2014

Day +3 Mucositis

Although the lower GI issues were a little better today, Ryan threw up several times, even though he didn't eat or drink anything.  He last threw up right before bed and it had blood in it. This likely indicates the start of Mucositis somewhere along his GI tract.

Mucositis occurs when high dose chemotherapy (and/or radiation) breaks down the rapidly divided epithelial cells lining the gastro-intestinal tract (which goes from the mouth to the anus), leaving the mucosal tissue open to ulceration and infection. It is most common in the mouth and throat.

About 85% of transplant patients get Mucositis, and it is most common in the mouth and throat. In addition to the pre-conditioning chemotherapy, the use of methotrexate to prevent GVHD prophylaxis can exacerbate any lesions of oral Mucositis. Ryan had his second dose of methotrexate today, and will have a third dose on day +11.

In most bone marrow transplant patients, Mucositis will start to resolve once they engraft and their ANC is above 500. Ryan will likely have this issue for a few weeks, and it will probably get worse before it gets better.

Sunday, June 1, 2014

Day +2 C-Diff Keeps Us in Isolation

Well, the C-Diff test came back positive. Ryan was started on some additional antibiotics and will be in isolation for 2 weeks. He is already going stir crazy, especially since he had a little more energy today. Anyone have non-tv ideas to keep him active while confined to his room?

Of course I couldn't resist launching my google investigation of "C-Diff" and "Gut GVHD" because I am really paranoid about Graft Verses Host Disease (with good reason).  I found a study that showed a correlation between a C-Diff infection early after transplant and the development of Gut GVHD. Then, I found another study published by Memorial Sloan-Kettering that stated they did not find a correlation. I'm not going to get too worried about it just yet. Overall, the transplant team feels he is doing very well, in fact better than most.

Ryan didn't eat or drink anything yesterday and the thought and smell of food repulsed him. Today, I was eating a croissant for breakfast and he looked over, asked what I was having, and then said "I want one!" It really surprised me, but he did eat about two-thirds of a croissant, drank some apple juice and, later, had a very small scoop of his favorite "Grandma Terry mac & cheese" from a stockpile of individual portions that she left here for him. (Note: in the pic of him holding his mac & cheese, I noticed later that his stuffed penguin "Iceberg" photobombed him.)

For a little in-room fun this evening, we built a "fort". I am hoping someone from Child Life or Physical Therapy can come find some things to do with Ryan tomorrow so that he can get some activity in. I don't want him to hang out in bed for two weeks if he is feeling well enough to be out of bed. It's not good for him, especially his lungs.