Back on Her Feet

Katie is back on her feet and walking around on her sprained ankle. She is limping a little bit, and doesn't dare to run or jump yet, but she is successfully walking all day long at school. She is very proud of herself.

Healing

Katie's sprained ankle is healing slowly. The bruise, which was magnificent, is now reduced to just a purple area about 4 inches long and an inch thick along the side of her foot below her ankle. She still can't walk on it or even bear much weight on it, but she has stopped wearing the air cast and is now back to wearing her sneakers. With some prompting, Katie can use her leg enough to balance herself on two legs although the leg with the sprained ankle is just barely touching the ground.

She surprised us all this morning by trying to and succeeding at a very short crab walk in which she successfully bore at least some of her body weight on the injured ankle. She proudly exclaimed that it didn't even hurt. Hopefully for her, the worst of this injury is behind her and things will just keep getting easier from here.

And Now for a Sprained Ankle

Katie recovered well from her Thrush. The Fluconozole cleared it right up. She was feeling good, eating well and getting lots of sleep in the days leading up to her last dose. So, we planned a sledding trip for the upcoming weekend. It was a disaster.

The trip started early Saturday morning. I wanted to get everyone on the hill early while the snow was still icy and fast. Temperatures have been climbing into the 40's during the day lately, and after a few hours of sunlight, the snow turns into slush. But first thing in the morning, it is compact and icy enough to walk on. I chauffeured the family to a hill just a few miles from the house where Amy would start at the top of the hill with the kids and I would wait for them at the bottom. The problem turned out to be that the snow was exactly as fast as I had hoped it would be.

Katie eagerly volunteered to go first. She hopped into her sled and headed for the bottom. Before long she was a little rocket flying down the hill and we could already see the potential for an accident as her sled began veering off the planned course and towards trees and bushes 50 feet off to the side. She was too far up the hill for me to get to in time and she was already too far down the hill for her mother to get to her in time. As I ran up the hill, I hollered to her to turn or roll out of the sled. She sat frozen, not knowing how to prevent the imminent crash and not daring to roll out of the fast moving sled.

As I watched, her sled plowed over the first few small bushes protruding from the snow and started to turn back in the right direction. For just a second, I hoped that she would actually make it through without crashing. Then her sled hit one bush too many end for end, ejecting Katie and sending her through the air for another three or four feet before she touched the ground again. When she hit the ground, she hit standing up and drove one foot into the compact, frozen snow. The rest of her body still had enough momentum to keep tumbling even as that foot tried to stay lodged in the snow. It eventually came loose and she tumbled a couple more times and slid to a stop on her face, already crying out in pain.

I thought she had broken her leg for sure, especially considering how easily she had broken her foot last summer. I quickly established that the only thing that hurt was her leg, and then I carefully took her boot off. Amy had arrived by now and we looked over Katie's leg carefully expecting to see very visible signs of a break. There were none, but Katie was certainly in pain. We took her back to the house to keep an eye on her and wait for the swelling. We didn't wait long. Within fifteen minutes we were on the way to the hospital, Katie sitting in her car seat with her leg carefully propped up on a box and using my coat for padding. To our great surprise, the x-ray showed no broken bones and Katie was sent home with an air cast to provide some support and a little protection.

This all happened five days ago, and Katie still can not bear weight on that foot. She has been at school every day this week, but when it comes time to move from one room to the next, her teacher carries her. When she just has to move around inside the classroom, she crawls. We still have the walker that she was given back when her neuropathy was so bad that she couldn't walk at all, but she refuses to use it. She says that hopping behind the walker hurts and she would rather crawl.

Her spirits are good and she is adapting well to her new limitations, but I sure do wish she didn't have to adapt. Whenever she tells the story, she is quick to point out that the whole trip was her "Daddy's idea" so her sprained ankle is "Daddy's fault". I have to agree. Next winter, we will choose a smaller hill.

Steroid Challenges

For the past several treatments, Katie has behaved as if she hadn't even gotten any chemotherapy or taken a course of steroids. This time, however, is different. She went to Fletcher Allen last Friday for her standard dose of Vincristine and Pentamadine via her port, and Methotrexate via a lumbar puncture. She then came home and started her 5 day course of Dexamethazone. Saturday she felt pretty good until later that night and then she had a horrible night. She felt sick, her body hurt, and she couldn't sleep. She woke up Sunday feeling remarkably well. Her energy level dropped off quickly and she spent most of her day just feeling a little tired. However, by Monday, she was complaining of various pains and becoming emotionally unpredictable. The littlest thing has been setting her off ever since. A boo boo of any severity is cause for screams and uncontrolled sobbing. Any sort of reprimand, even a slight one, is cause for either inconsolable sobbing because "Daddy scolded me." or a kicking and screaming tantrum.
Today was the last day of Dex, and most of the other drugs effects should be waring off by now. I can't wait for Katie to return to normal again.

A Bubble of Expectations - That Burst

Katie went back to day care for the first time in eight weeks yesterday. She was excited to get back to other kids. We were excited to give her that little bit of normalcy. Her day care provider was excited to get her back, and all of the kids at day care were excited. The only problem was reality.

Katie woke up Monday morning, ready to go. She got dressed, ate breakfast and brushed her teeth with no problems. But as it got closer and closer to the time we had to leave, she started feeling less and less well. She had been awake for about an hour and she had already burned up most of her energy and her breakfast wasn't sitting well. We dropped her off at day care anyway, but you could tell that her excitement had faded. Not long after, we got a call from day care. Everyone's excitement had faded. Katie was not feeling well, and she was grumpy and uncooperative. The kids wanted to play with her, but she didn't want to play. The day care provider was disappointed and worried. We were saddened. We had all hoped that everything would be okay and her return to day care would be this miraculous return to the life she was living before she got sick again. It didn't happen that way, and we should have known better; but it was easy to hope for the best and believe that it would happen.

Today, she went back to day care, but with more realistic expectations. She knew she wasn't feeling her best. The kids knew that she might not play with them. Her day care provider knew that she might not cooperate or be in the best of moods, and we knew that the triumphant return had been a bit of a let down for all of us. However, with that reality check firmly established, we carried on with our plans and hoped that today would at least be a little better than yesterday. It was.

Katie got through her day just fine. She was a little low on energy and wanted to lay around more than she used to at daycare, but she has been laying around for eight weeks. It is going to take some time to get her energy levels and stamina back up. She was less grumpy today and more cooperative as well. All-in-all, it was a good day. The only down side - one of the other kids shows signs of pink eye but he hasn't seen a doctor yet. Ah the joys of day care.

She is Tough

She is indeed tough -- and still mad too. Katie is slowly recovering from the infection that has manifested as the sores in her mouth. Her lips are looking a little better and the sore inside her mouth is shrinking. The sores still hurt though, as evidenced by her behavior. She is still mad at the world and is prone to emotional outbursts directed at any and all people in the room for reasons as small as "he talked to me" or "I'm not hungry". She also isn't sleeping through the night. She is waking up at least once in the night crying because her mouth hurts. Tylenol and Liticain usually work quick though and she is back to sleep in 10 minutes or less.

Grandpa and Grandma Kelley picked her up this morning and are going to stay with her while we are at work until she recovers enough to return to day care. I hope they have good luck today and manage to avoid the worst of her outbursts.

The Little Things

Katie was back to having a fairly normal day in the hospital again today. Her ANC is still about 30. Her hemoglobin dropped a little lower down to about 9.8. Her platelets dropped a little lower too, but neutrophils and monocytes are still slowly increasing in number. She feels fine except for a nasty cough that she has now. The cough resulted from the unwelcome return to the hospital Tuesday night and all of the screaming that went with it. She had such a coughing fit at one point this morning that she vomited. Unfortunately for Katie, she was not in her room at the time and therefore she was wearing a mask over her mouth and nose at the time. It seems like a rather unpleasant experience. The doctor thinks she has reactive airways and plans on treating her with a nebulizer or an inhaler. They took chest x-rays to be sure and the initial results don't show anything wrong with her lungs. She is also dealing with a little acid reflux but that should be easy to treat with one of the medications that she has already had in the past. At home she doesn't like the taste of it, but in the hospital it can be run through the IV.

I just called for a further update, but I got shooed off the phone because they were busy playing in the play room. So, I guess they are having a good time and Katie is feeling pretty well this afternoon.

Birthday Update

It's late, but Josh and I are now leaving the hospital and headed home. Amy will stay with Katie in the hospital tonight and tomorrow night so that I can get in to school at least a couple of days this week.

Katie celebrated her birthday in the hospital today, and the hospital staff certainly did their best to make sure that she felt especially appreciated today. She was showered with happy birthday wishes and gifts and kindness. The child life specialist went so far as to allow me to shop virtually with a personal shopping assistant. I was given an computer with Internet access to browse online stores for what I still wanted to get Katie for her birthday but didn't have a chance to get while stuck in the hospital. I made up a shopping list from what I found and one of the volunteers took my shopping list and went shopping for some of Katie's birthday presents. Everything I asked for was purchased and it was returned to the room while Katie and I were taking an afternoon nap to recover from the late night last night. I woke up to find a bag full of the presents I had requested, a roll of wrapping paper, some scissors and some tape. By the time Katie woke up she had some presents around her to help set the atmosphere and keep her believing that it really was her birthday and we were doing our best to make it a special day. I didn't let her open a present until her mother, brother and grandparents arrived around 6pm for dinner. Her excitement built all day and she had a great little birthday party in her hospital room. She ate herself full of Chinese food and cupcakes and then toured the hospital in a wagon, giving out party favors; Slinkys and play dough to the kids and cupcakes to the adults. As Josh and I left Amy and Katie were settling down to play some video games.

As for her health today... she felt fine. Her fever was gone by the time the antibiotics were flowing last night and it did not return at all today. I can't explain it and no doctor has been able to explain it yet, but our last few emergency room visits have been very similar. Her ANC drops low, she goes to bed for the night and after a few hours in bed her temperature climbs. We wake her up and make arrangements with the hospital and by the time we get her admitted, the fever has come back down. It is one of the most frustrating feelings in the world to know that I just dragged my daughter out of her bed, and into a hospital where she absolutely does not want to be so she can kick and scream as she is examined and her port is accessed only to have her fever disappear like it was never there in the first place. I just wanted to turn around and bring her back home last night, but there was no way anyone was going to allow that. A fever can be deadly and every fever must be treated like it will be. I am so glad that we are almost to maintenance.

On a side note, my heart goes out to my two uncles who are now battling their own cancers. It is a long hard, scary struggle.

Josh and I are now going to get on the road. I still have to drop him off at my parents house in Newport before going home myself. He should be tucked into bed by midnight and I will get home somewhere around 12:30.

A Day On The Couch

As the title implies, Katie spent most of her day on the couch. If she wasn't on the couch, she was in bed. She took at least four naps today and she never walked once. She did not have enough energy to pick her head up most of the time. Arguing made her tired so we didn't even get many tantrums.

Tylenol was our friend today. She complained of leg pains whenever a dose of Tylenol wore off. The leg pains are caused by the vincristine and there is nothing we can do about them except give her some pain reliever if the pain gets to be too bad.

We are also dealing with constipation again. She doesn't seem to feel that it is a problem yet, but we keep her on a regular regiment of laxatives to keep things flowing and for two days now, nothing is flowing. We even gave her a stronger laxative today that should have worked within six hours and we got nothing. Hopefully, that won't become a problem for her.

We will let you know how things go again tomorrow.

Further Good News

"Blog, woman. Blog," my husband scolds. He is putting Katie to bed, and I don't expect him to return any time soon. It's a lengthy process involving many stories, and they are just getting started.

I am fighting fatigue myself, but there is very good news to report: Miss Katherine Grace made a trip to the lab for blood tests today, and the results are amazing. She has platelets to spare (123,000!), her hemoglobin is fine (9.9), and her ANC has jumped from 190 to 726. She has not had a neutrophil count this high in a long time.

I called the kind folks at Fletcher Allen today to express our gratitude and to tell them just how well Katie is doing. There is no way to explain just how happy I am to be home with two healthy children. The version of Katie I came home to after work today shares very little in common with the Katie who occupied that hospital bed. The Katie who lives in this house doesn't need to watch television because she is so busy playing. And eating. And laughing. Katie was out back in the swing when we made it home from school, smiling and celebrating our return.

Josh was right about "the happy tears," by the way, and he deserves credit for having inspired them. Katie was laughing last night as she ran between her brother and her dad. "Come to me now, Katie," Josh would cheer, and Katie would lurch in his direction, giggling and reaching out for his hug. It was a tender moment. I was happy to see Katie enjoying herself and using the muscles she needs to develop. Her strength is returning. The real beauty of the moment for me, though, was the joy I saw in Joshua's face as he encouraged his sister to run and celebrated her efforts. Most of the time, I have ordinary children who fight about toys and boss each other around. These were not ordinary children. The love reflected in those two smiling faces was real, and it was powerful. I was so proud of them, so fully in love with them. Joshua can make Katie laugh like no one else can. He is such good medicine for her. I can be hard on Joshua--he is five, and he is relentless--but there is such good in him.

I am a very lucky woman. I don't need a thing for Mother's Day this year.

Home Improvement

Boy am I glad that this little girl is out of the hospital. She is so much more alive when she is home. Katie is animated, motivated and hungry. She spent the day yesterday, smiling, laughing, playing and loving everyone around her. She also spent a good portion of the day eating. She ate everything in site - never much of any one thing, but no food was safe within her sight. This morning has started out much the same. She asked for cereal for breakfast, but in the picture included with this post, she is eating my English muffin and turkey sandwich. She slept through the night peacefully in her own bed and didn't wake up this morning until after her mother and brother had already left for school.

Being home for her is the magic medication that is doing more to improve her mental and physical health than any of the drugs at the hospital. She is more active, more satisfied, and more willing to do the things she needs to do to regain some of the physical capabilities that she lost during her latest round of illness.

We will be going to North Country Hospital this morning to get the blood drawn for her first cell counts since leaving the hospital so that we can hopefully have counts back before the end of the day. Otherwise, if we wait till this afternoon for counts, we won't get the results back until Monday.

Her physical therapist will meet us at home this afternoon and we can begin to work on getting her to walk confidently again. Her muscle control is very shaky right now, and while holding a cup or some food, her arms shake uncontrollably and make it difficult for her to feed herself. Her legs are just as unreliable, but cause more problems for her when they fail. She is afraid of falling down, so she tries not to walk much at all and if she has to walk, she walks the shortest distance possible. The only way to describe her walk is to compare it to a the gait of a person with mild cerebral palsy. This new inability to walk is a direct result of her chemotherapy. The Vincristine that she gets generally causes this side-effect after a while and we have been told that Katie resisted the side-effect for a longer time than normally expected. With Therapy and time, this side-effect will eventually reverse itself, but for now we have to deal with it.

Amy has her own opinions about how beneficial it is for Katie to be home and I am encouraging her to add those at some point today. But just to give you a heads up, Josh said last night that he has caught her crying happy tears several times already while watching Katie interact with Josh and I.

The Good Signs Continue

I have just talked with Amy and gotten further updates on Katie's cell counts, her medications and her experiences wandering the halls outside her room. Katie's white blood cell count is now up to 1007. Her hemoglobin is currently 8.8. Her platelets are a blissful 103,000 which should mean that petechia are a thing of the past for now. Her antibiotics have been cut from the three that were giving her the nastier side-effects of whole body hives and the deteriorating stomach lining to just one. The remaining antibiotic is Ceftazidime, a drug that she has had in the past with no side-effects.

Katie is still feeling good. In fact, she walked on her own today without help from her mom. She found a little shopping cart to play with and she walked down the hall to a little kitchen area just for the patients at Baird 5. The room contains a fridge (stocked with ice cream, Popsicles, and milk), a microwave, a water and ice dispenser and cupboards filled with things like crackers, cereal, soup, and other kid friendly food. She put a container of ice cream in her cart, grabbed a spoon and headed down the hall to eat in the play room. Unfortunately, after twelve days of mostly bed rest and no walking, she was a bit unsteady on her feet and she ended up falling down and getting very upset about that. Her ability to walk has also been compromised the the Vincristine that she received as her last chemotherapy drug. It can effect a person's nervous system and make it difficult for the legs and feet to do what they are supposed to do.

Aside from that, she is having a really good day, and that has put Amy in a really good mood as well. Looking ahead to next week, we may actually be able to bring her home again. Bringing her home this weekend may even be a remote possibility. Of course, no doctor has been foolish enough to say this. I'm just sharing my hopes in a public forum.

ANC Still Climbing

The quick and dirty update of the morning is that Katie's ANC has climbed to 150, she has not had a fever for 36 hours and she is full of energy. Amy was unable to locate the other numbers from this morning's test results quick enough to make Katie happy because she was chomping at the bit to get out into the hallway to play with the pink car again. She was also trying to use her elevated hospital bed as a slide which was making Amy too nervous to stay on the phone for long. The doctors are happy with the current situation and are going to start dialing some things back. To start with, they are going to keep her on the total nutrition IV for only 12 hours per day now instead of the 24 hours per day. That should give her an appetite again and get her to start eating on her own. Beyond that, we are still just watching the numbers.

The Numbers are Still Climbing

Katie's ANC is still climbing as of this morning. It has now reached 110. I am ecstatic, but that number just can't climb fast enough for me. Amy is feeling the same way and she has already asked the doctors to reduce the number of antibiotics that she is on, but the doctors want to keep her on the current levels of antibiotics until Katie's ANC is at least 500. Keep climbing Katie. Her platelets are up to 74. Her white blood cells are up to 740 and her monocytes are up to 39%.

Despite her cellular numbers climbing, she doesn't appear to feel any better today than yesterday. She has spent most of her morning snuggling in her mother's lap or resting in her birdie nest. She is playing opossum whenever someone enters the room. She closes her eyes and pretends to be asleep so that people wont bother her.

We are getting a bit anxious now because it seems like we can see the light at the end of the tunnel and we can definitely see the negative consequences of this many drugs for this length of time. Its time to bring her home.

Changing of The Guard

I'm back online and Amy has relieved me at the hospital. Interestingly enough, I am not online in a traditional setting but from my laptop while sitting in front of a campfire beside a tent in my brother's back yard with my brother Ryan, my son Josh, and his cousins, Kyler and Eric. I was not prepared for this makeshift camping trip, but Josh has a bit of a cold so Amy dropped him off at my brother's house before coming to the hospital. By the time I got there, they had already cooked up this little plan and were busy moving sleeping bags into the tent. So I just traded the hospital bed for the hard ground. Somehow, I don't feel like I'm getting the better end of this deal. I'm going to miss my Thermarest, my sleeping bag, my warm clothes and every other camping item that I would have brought had I been forewarned.

But enough about me - back to Katie. When I left the hospital this evening, Katie had a temperature of 38.4 Celsius. She was in good spirits and has been in good spirits ever since she vomited this afternoon. I'm not sure how much Amy has passed along in my absence (I didn't read the earlier blog postings before starting this one) so I will give a brief synopsis. She has had a fever, off and on, for the past couple of days and has stopped eating anything meaningful. To handle the eating problem, A new IV has been ordered called a TPN which should provide all of the nutrition she needs even if she doesn't eat. The fevers are a bigger problem. The doctors are not fond of this newest rash of fevers so that are starting Katie on a new round of antibiotics, afraid that they may be missing something in the cultures. In addition, Katie developed a small cough today which is really the first localized symptom that we have seen in days. Given the cough, no one wanted to take a chance that something might be wrong with her lungs, so a CT scan was ordered and Katie underwent her first CT scan with flying colors. We had a couple of hours to prepare for the scan so I spent some time telling her what to expect and explaining how the process would work. I even used a small toy dog and some parts from the hospital bed to simulate someone sliding into a CT scanner. Katie admitted that she was scared, and her eyes were as big as saucers going in, but she held still and the technicians were able to get a good picture of her lungs very quickly. It helped the the Child Life people hooked us up with a portable DVD player and a Dora video for Katie to watch while she was getting scanned. I was able to don a lead shielded apron and stand next to Katie, holding the DVD player so that she could look at the screen and watch the video upside down while being scanned.

After the CTscan, Katie happily went back to her room and took a desperately needed nap. Unfortunately, she vomited about 10 minutes into her nap and had to start all over. After I got her all cleaned up, she slept peacefully for the rest of the afternoon. She even got some of her appetite back and ate a little tortellini for dinner. She was very happy to see her mother, and spent lots of time giving her hugs and kisses and telling her she loved her. Josh was just as happy to see me, but Josh, I am unhappy to report, has a cold. He won't be allowed near his sister until his cold clears up, so they won't see each other at all this weekend. Katie asked for Josh too, but she accepted it well when we told her why he wouldn't be allowed to visit.

At this point, we are going to wait and see how Katie handles the new anti-biotic and anti-fungal medications. If things are pretty much the same next week, she will probably have her bone marrow pulled and tested on Wednesday. The bone marrow test will let the doctors know whether her marrow is producing healthy cells like it should be or whether it is producing leukemia cells again which might explain why her cell counts are not coming back up like they are supposed to. Hopefully, she recovers before that time and the tests only show healthy, productive cells that were just repressed for a while by a combination of chemotherapy and a viral infection.

With these happy thoughts in mind, I will now curl up next to my son and go to sleep in this tent with the smell of camp fire smoke in the air. This is our first camping trip of the year, even if it is in the back yard, and I will make the best of it.

Tuesday Update

I spoke with Amy earlier this morning to get an update on Katie. This is what she had to tell me:
Katie was sleepy this morning because her sleep was broken up again last night in a fashion similar to the night before. She would wake up every twenty minutes or so, toss and turn, whimper and fall back to sleep. She also went to sleep fairly late even though Amy dictated bedtime around 8pm. They spent lots of time reading together waiting for Katie to fall asleep, but the little girl is becoming nocturnal. Her days and nights are filled with the same atmosphere, the same activities and the same regular nurse visits whether day or night. Her internal clock has nothing to takes its cues from anymore.

Aside from being a little sleepy this morning, Katie is very animated. She is chatting, smiling, laughing and playing. She is also feeding herself now which is nice to see again. Before I left Sunday, she was unable to feed herself because she couldn't hold her hand steady enough to get the food to her mouth. Her hemoglobin is currently at 9.5 which is respectable and the doctors are happy with that. I'm actually a little disappointed because her hemoglobin levels Sunday were 10.2. Still, she is above the level of a red blood cell transfusion.

Her fluid levels are also good - so good in fact that the doctors are going to disconnect the IV except for when they need to use it to put in medicine. That will give Katie a few hours of freedom from her tangled up IV lines and might help her sleep better tonight.

The bacterial cultures have still not shown any signs of bacteria that would have made Katie sick. Therefore, the antibiotic drugs are going to stop going into her system tomorrow. In addition to that, her next chemotherapy session is being postponed to allow her to have some "normal" recovery time at home at the end of all of this.

That's all I have for now, but things seem to be looking up. Oh, and that massage I mentioned yesterday... Amy was scheduled to get that at 11:30 this morning.

A Little New Information

Katie's day has improved a bit since this morning, but not a great deal. She doesn't seem to be in as much pain and she is willing to eat. The good news is that her ANC might be starting to climb again. It is her ANC that lets us know how her immune system is doing - the higher the better to a point. Her ANC has been zero for a couple of days now and 500 is usually considered the cutoff point for an effective immune system. Well, as of this afternoon, it is up 4%. I asked what 4% translates into but I haven't gotten an answer yet. I'm going to assume that 4% does not mean 4, but that her ANC is probably a little higher - like maybe 25. Either way, it is good sign. Another good sign is that her intestinal bacteria test showed that Katie still has the necessary bacteria in her system to digest food properly, and they are not accompanied by any bacteria that would make her sick. Conversely, the good signs are accompanied by another bad sign. Her platelets are dropping again for no known reason when they should be recovering.

Earlier, I noted that Amy was pretty frazzled... The hospital staff noticed too. Keeping the parents mentally and emotionally healthy is an essential part of making the patient healthy again, so the hospital is taking steps to help Amy relax a bit. They have arranged for Amy to receive a massage. She LOVES massages. With that kind of treatment, she may not want to come home Tuesday night when I go there to relieve her.

Still No Change

Katie spent the entire day in bed, suffering from a low grade fever. I know that I wrote that her fever had broke last night, but it came back by 10am and stuck with her for the rest of the day. It left her feeling generally low on energy and unwilling to move, be moved or be touched. However, she did at least have enough energy to interact with people today and was generally in a good mood as long as the person she was interacting with was not trying to take her temperature, take her blood pressure, give her medicine or change her diaper.

Because of the sustained fever, the doctors have added another antibiotic to the stream of drugs flowing through her IV. The cultures so far have tested negative for all of the nasty bacterial infections so far, so the doctors are thinking the cause of Katie's symptoms is some kind of viral infection that her body will have to fight off on its own.

Given that possibility, it now looks like Katie will stay in the hospital until Wednesday or Thursday of this week. Katie hasn't complained yet, but this stay at the hospital has to feel really long. The first time we were admitted, back in January, she was allowed to wander the halls at will, ride bikes, visit the play room, etc... This time, she has been and will be spending all of her time in her little isolated hospital room.


Josh and I will be headed home Sunday while Amy and Katie stay at Fletcher Allen. School starts up again Monday and Josh and I will be back in school and on our regular schedules again for a couple of days at least. Beyond that, Amy is definitely going to need a break and she will be wanting some time back at school herself, so I will probably finish out the week back at Fletcher Allen. I'm not looking forward to spending even a couple of days in Katie's little hospital room. I don't know how Amy has already spend three days in there and is looking forward to another two or three. I want to thank Ryan and Heather for letting Josh and I stay with them this week while Katie has been in the hospital. Josh and Kyler have had a great time playing together.

Hanging On

Katie is just hanging on and waiting for her next transfusion at this point. Her energy levels are really low and her whole Body is hypersensitive to touch right now. It hurts her just to pick her up. Her blood cell counts were really quite low when we left the hospital the other day. They were borderline at the time and the doctors decided to see if she could wait three more days before getting the next transfusion. Well she is wating, but I can't say that her quality of life is very good. She and I will both be glad to get some fresh blood into her on Monday.

What Does Spring Look Like at Your House?

Rick took this picture from our front porch this afternoon. This is what a spring day here in the Kingdom looks like. (I thought it was April?) Katie had a relatively good day. She spent the day a good portion of the day napping in our bed. What a beautiful girl...

I went to work today, where I was pleasantly surprised by positive reports from the sub who covered my classes. It's always a little scary to open the sub folder the day after I have been out, but it's clear that the kids had a good day in my absence. Maybe I should be out more often?

Joshua had a good day at school, too. They are working on addition facts, and he enjoyed making Flubber. (The flubber project appears to have been more exciting than the math facts...) We went out for ice cream after school today with Auntie Teri, and that was fun. I finally caved and bought Joshua the Spiderman Legos he has been coveting, so that was a treat for him, and I enjoyed some grownup conversation.

Poor Rick, on the other hand, spent the day washing Katie's car seat, and that cannot have been a treat given yesterday's vomitfest. The straps were especially disgusting. All the car seat's various parts are strewn about the living room, and I am sincerely hoping that I will not have to reassemble it; that sounds like a good job for gadget guy.

Katie appears to have recovered from yesterday's excitement, although she is complaining about pain in her legs this afternoon. That is easy to fix, and the Tylenol she just took should make it easier to give her a shot of cytarabine, too. The potential glitch, as we look at next week's treatment, is that Katie's liver enzymes are high, and she cannot continue with vincristine until those return to normal. We are hoping that Katie will not need blood or platelets until Wednesday or Thursday, but it is hard to guess what will happen. I would readily admit that my control freak self finds it difficult to accept that some (all?) of this is beyond my control altogether. The best laid plans of mice and men and all that. Oddly enough, I think this process is teaching me to roll with challenges outside my traditional comfort zone. Maybe I will finally "mellow out." Or maybe not. There just isn't enough room in my day for panic. Don't you worry, either. Katie will be fine. Katie will be fine. Katie will be fine. It isn' t a catchy mantra, but it works!

Joshua and Rick are planning to ski this weekend. Many thanks to Gigi Poginy, who found a very short pair of skis in her garage. Katie will be all set next winter if we can just find her some boots. I love looking forward to the adventures Katie will have once she has finished these aggressive treatment cycles. It's fun to imagine a day we can all ski together! Enjoy the snow, friends. (Or join me in hoping that it all melts and quickly! Happy Spring?) Have a nice weekend.