Tuesday, March 31, 2009
Thus, we arrived a bit before 9 and were out a bit after 12 for The Boy's receiving platelets.
I spoke with the doctors and nurses about The Boy's refusal to take Bactrim, the liquid antibiotic. The nurse who had forced (unsuccessfully) the Benadryl said that she thought her ears were burning from being talked about. There are two other options for this antibiotic. The first is to get it in a pill form. It is a larger pill, much larger than the little tiny one that he takes for his blood pressure. We'd mix it in ice cream or whatever other food item would hide it sufficiently. The second is to give The Boy an IV antibiotic treatment once a month, for an hour. The doctor said that it may not be as effective as the Bactrim, but then, an IV that actually goes in would be a lot more effective than a liquid med that doesn't. So we'll try again this weekend with the liquid and see if perhaps he has gotten over it.
Judging from the fact that he fought me on taking a syringe of Tylenol before his platelet transfusion, I'm not feeling very optimistic. The nurse suggested that we get him comfortable with the syringes again by giving him juice in the syringe. I'm not really buying that either, because The Boy will take Zofran in the syringe without a problem, once he figures out what is in there. He will take his vitamins (which smell and probably taste worse than the Bactrim) from a dropper. He will also take tylenol at home, from the dropper, when he needs it. So basically, this kid isn't stupid. We'll see if maybe the honey method will work for us again, and if not, I'll just ask to go directly to the IV medication. Perhaps The Boy will not need many additional oral meds until he is at least a little bit older.
I've been entertaining the idea of what to do about potty training. On the one hand, I think that we're a little ways from it, but on the other hand, he is able to identify what the potty is and sit himself on it (if he wants to) and he is old enough to start. That said, he would rather use the potty as a toy than as an actual potty, and it is a very little potty. He'd really need a bigger one at this point--we bought the one that we have when The Boy was 9.5 months old. Shortly before his diagnosis. At one point I didn't rinse poopy diapers for a day or two, because I was able to get him on the potty to poo. He also goes longer in between urinations--sometimes when we go to change him every two hours exactly during chemo, he isn't even wet yet. He often wakes up dry from naps. What I know about potty training is that it is dicey no matter what, and the child will complete the process when he is ready, but they also need to know about what it is before they can be ready. Basically, if I start him on potty training now, it will take us longer to complete the process, and it will be more work, but he may complete it far earlier than if I were to wait until he is much older. Or it may not stick and it won't make a difference when we start because he'll just want to do it later and not earlier.
It won't be much more work for The Boy to stay in diapers longer, as Baby Bear will be wearing them once he arrives. Most of the ones that we have can be used by either the little one or the big one.
I'd like to try to get in another nap (for both of us) before OT today. Let's see how it works.
Fun, except for the part when I was playing 1-bass-only stuff and my music fell. Oops.
Boy is ok. Today he is getting platelets. Probably needs more blood or platelets later in the week. Then we have OT today. PT was good. She says he is really on track now. His walking is getting closer and closer to typical.
Sunday, March 29, 2009
Maybe they can give him the same medicine in pill form and I can just crush it and give with more honey.
Remember that even if I wanted to, I can't force him to take liquid meds, because he just throws up. Violently. Also, it is an entire teaspoon, twice a day, three days a week. Not that he's gotten much of it this weekend. Fortunately it is just a prophylactic; hopefully he didn't need that type of protection this week.
He was sort of cranky this morning, although he doesn't have a fever and he ate very well. Probably tired because he has decided that he doesn't want to sleep, now that he knows how to get out of any bed.
Friday, March 27, 2009
Now he is still naked. And he decided that he was hungry for shredded wheat, so he grabbed the box and started eating from it.
Unfortunately, several hours earlier, at the treatment center, one of the nurses had given him Benadryl orally, which he usually gets as an IV med. I told her that he wasn't going to take it before she even tried, but she wanted to try anyway. Of course, he was in no mood for it, because it's gross. She held his chin up in order to get him to take it. He spit it out, and I told her to stop because I didn't want him throwing up. He got it IV anyway.
This evening, he was in no mood to trust a person with an oral syringe. I made the mistake of trying to give it to him anyway, and it caused a massive puke attack. Gross.
Musical Daddy pointed out that there was no use in getting upset at the nurse about it, because I should have told her right away that there was no chance of him taking that medication orally. Spilled milk, he said.
Another thing I could have done, and should have done, was to give him his anti-nausea medicine and then waited 5 minutes. I didn't think of that either. That would have made more sense, except that I was so misled by the fact that he had been feeling so well all week, with no appetite issues to speak of and no major aversions.
Anyhow, since we need to do laundry anyway, I may as well start with whatever set of laundry will include the puked-on outfit. Sigh.
We don't want that. Really, it's not how we prefer to spend our time.
He is otherwise fine. Currently he is playing and coloring. Grandpa is here. Good times.
Thursday, March 26, 2009
He has still been pretty impy today although he is sleepier. He has also eaten normally thus far, although he is getting his Zofran anyway, just in case.
We are SO excited that he is getting a swingset next month! Here is the set that he is getting. We'll be able to invite [healthy] friends over to play on it.
Also, the OT and PT recommended that The Boy have a sandbox. We didn't initially want one because of the mess factor, but they said that for sensory reasons, it would be good for him. I want this one, the Little Tikes turtle, because it seems like the easiest thing. I think we'll have to wait until we choose the location of the swingset to determine where the sandbox will go. And we have to be sure to put the lid on after we're done!!!
I had a great time at orchestra rehearsal last night. I was just feeling really focused and was very into playing. We're having our concert on Sunday afternoon. If The Boy's white count is decent, we'll bring him. If not, I'll call someone to come watch him, even if Musical Daddy doesn't attend the show, so that he has a chance to get some things done.
Wednesday, March 25, 2009
Someone needs to stay in the hospital with the child, so you need to be sure that you are comfortable. Children who are under 2 or 3 will be given a crib. If your child will sleep fine in a strange crib and you are okay to sleep in the folding chair thing, it's easier. Do not be afraid to ask for a bed. They can get you one. If you sleep in the bed with your child at home, or even if you don't normally, it is a lot more comfy to use the bed. We used to bring an airbed, but it was too much of an extra pain in the patoot. Depending on the size of your room and who is with you, you may still want one.
You probably won't get much sleep until you get used to the extraneous hospital noise. Also, they will come in and take vitals overnight.
If you can stay on the same sort of sleep schedule that you do at home, then that's great, but if it doesn't work out, just catch sleep where you can. Try to nap when your child naps even if you don't think you need it (although if you need to do some straightening, do that).
Diapers get weighed at the hospital, so you need to save them. We get one of those little pink basins from the hospital and put all used diapers in there, and the basin stays in the bathroom, so that the diapers aren't sitting out in the room. If you use cloth and take those to the hospital, be sure that the staff knows the dry weights of your diapers (they will weigh them) and then you should keep a record of the dry weights as well, in case they need to ask again.
Babies/toddlers in diapers who are on chemo need to be changed every two hours (more if they poo, obviously). Try to get on a schedule with that, and then if it changes due to poo or very wet pee, just shift the schedule (be on "odds" or "evens"). At night, do ask the nurses to change the diapers. They will try to let you sleep although it is a disturbance that may wake you and your child.
If your child is potty-trained, be extra-vigilant about making sure that they go to the bathroom because being on IV fluids makes them go more. If there is any issue at all about getting to the bathroom, you could try a little potty by the bed. Diapers or training pants are an option; you might just use them overnight, but remember that they'd still need to be changed every two hours if they are wet.
Also remember that pee/poo/puke is toxic when it comes from a child who is receiving chemo or who has recently had a dose of chemo. You need gloves to change diapers or clean up messes. If it gets on you anyway, wash it off immediately. Call the nurse if you need help and tell them what happened--they'll likely send someone pretty quickly.
Every hospital is different in how they deal with menu. Some make it like room service; others have meals that come 3 times a day and that's about it. Often the floor will have a patient fridge with things like milk, juice, pudding, jello, and applesauce, along with other food in the pantry. Bring snacks if your child has certain preferences. If the meal schedule doesn't line up with when your child wants to eat, try giving just a little snack so that your child will eat "real" food.
In terms of what to eat, that's up to you and your child. Rice and mashed potatoes are good if stomachs are sensitive. Most hospitals have a pretty good selection. Ask for what you want. When The Boy was first diagnosed, they tried to bring him baby food, which he never ate in his life, so I had to keep asking for regular food for him. Order extra stuff so that you can have it too, and if you can store leftovers for when you child gets hungry later, do so.
Ask for a high chair if your child needs one. If you can't get one, ask again. Another option is to bring a booster chair with/without a tray. But then, that's another thing to bring with you. We pack plastic bibs with pockets, which are easy to wash.
Try to keep track, at least a bit, of what your child eats and drinks, and tell the nurse. If he/she is over a year old, they won't need anything like exact measurements, but let them know. If you are still breastfeeding, they may ask you to time it. Don't bother because that will stress you out and is completely inaccurate with older babies anyway--just tell them when you breastfed and whether it was a little snack or a large feeding.
We don't use the playroom, even when we get private time. The first time we were inpatient for chemo, we all got stomach viruses and apparently it was going around. The playroom is supposed to be for patients who are not "sick" but who are hospitalized for something else, but sometimes things get in there. The staff in the playroom is supposed to keep things clean, which they do, but if they miss something, then it can be an issue. They can, however, bring toys and games and videos to you. They stop by, or you can call them. If they bring something to you, they will clean it thoroughly.
That said, we come with our own travelling playroom. Infants/toddlers need a wider place to play and will want to play on the floor, so we bring a playmat. I wipe the floor with disinfectant wipes (the hospital will sometimes have really strong ones; Clorox/Lysol wipes also work and smell better) and then put down the playmat tiles. We have toys that for the most part are only used at the hospital. The Boy gets all excited to see them because he hadn't seen them since the last stay. Everyone's toy preferences are different, but our favorite toys are the Playskool Pop-Up Pals, the LeapFrog Piggy Bank, and the Mega Bloks keyboard (different blocks change what the keyboard does); he also loves stickers and coloring so we make sure that he has those as well.
We clean the mat and the toys once a day, with Lysol wipes. It is easier if you have more adults in the room, but you can also do it at bedtime. This is for infection control--if we're already in the hospital, we'd rather not stay longer.
Speaking of which...
Everyone who enters the room must wash/sanitize hands right away upon entering the room. Don't take no for an answer either, and don't listen to someone who says that they're not going to touch your child or that they'll wash hands once they do plan to touch your child, because they still might touch something else in the room. You can make exceptions if a person is just walking in the doorway and you send them on their way.
No shoes on the playmat. If your child is just learning to walk or has been directed to keep shoes on more often, clean his shoes frequently and make the exception for the child. I assume that you, being the one reading this, are one of the people in charge of setting protocol in a child's hospital room. So you can decide.
We have people take shoes off when they arrive to visit. Not sure how effective it is, since the nurses and docs don't. The housekeeping staff should, hopefully, wear shoe covers.
With housekeeping, make sure that the room is relatively uncluttered so that they can clean thoroughly. Also don't be afraid to tell them to come back in ten minutes so that you can straighten up. Call them additional times if you feel that it is necessary. That said, be pro-active about cleaning little messes.
Other Procedural Items
Get extras of all linens that you might need ahead of time when you arrive, either by asking the staff or just going to get it yourself if you know where it is (at our hospital, it's right there on a cart). Get hospital gowns, bedsheets, absorbent pads (these are the quilted squares, about 3 feet by 3 feet. Quilted on top and waterproof on the bottom), pillowcases, towels, blankets and whatever else, so that you don't have to worry about waiting for them if there are any accidents or issues. As I mentioned in a previous post, it is easier to keep The Boy in a hospital gown than to worry about accumulating laundry. We brought a few diaper covers this time (to go over the disposables, oddly enough).
In general, don't be afraid to ask for anything that you need for your child. That's why the hospital staff is there. When things take longer than they should, be sure to ask the nurse, nicely, for help. She may be able to make an extra call and find out what is going on. Something that may have been ordered correctly might need some quick reminding in order to get it going properly. Don't get too impatient because nothing moves quickly in a hospital, but letting your wishes be known will help. For example, The Boy's chemo that he just finished is a 5 day treatment, but it is a long day of treatment with the extra medicine and can easily be a 6 day treatment if the chemo starts too late. So the doc had the chemo moved a bit earlier each day.
Ask for things even if you're not sure that they do them. You never know. There's no need to be miserable in the hospital, any more than you already might be.
I think that covers most of the important things. Feel free to add, if I've forgotten anything.
If my hemoglobin were 8.4, I would NOT have been bouncing off the walls the way that The Boy was last night. But I'm not a toddler.
Have a bag packed with hospital things, and have it prepared just in case you have to go to the hospital suddenly—that way if someone else needs to pick up things for you, they can just grab the bag. Use a large rolling bag if you can, even if you don’t fill it—it makes leaving the hospital much easier because you always accumulate things while you are staying if you are there longer than a day or two. This is what we usually have with us. Your list may vary according to your child’s needs and your hospital’s accommodations.
1 change of clothing for parents
Socks and possibly sweats for the patient—we usually keep our boy in hospital gowns because sometimes clothing gets messy, or sometimes he gets sick or get something on the clothing…it’s just easier not to have to worry too much about the children’s laundry. Do bring an outfit for going home if your child will be in gowns (or just have him wear the same thing home that he wore to the hospital)
Sippy cups and kid silverware if your child uses them (have a few so that you can cycle through washing them and cut down on germs from cups sitting around).
Dish soap (in a plastic bag)
Hand wipes (you should use these a lot especially if your child cannot easily wash his hands yet).
Disinfectant wipes (Lysol/Clorox wipes) for cleaning toys, floors, surfaces
Hand lotion (it gets very dry in there!)
Diapers and wipes. Pretty much all hospitals stock disposables and provide for the patients. Not all hospitals provide wipes—ours does not. If you prefer to use your own type of diapers (we do—sensitivity issues), make sure they are in the bag. If you use cloth and must use them in the hospital, it shouldn’t be an issue—just try to have several of the same type. They weigh diapers to check urine output, and it will be easier if you have only one or two kinds with you so that you know the dry weights and they can calculate based on that. Also, with cloth, pack wet bags and maybe baking soda or tea trea oil.
Toys and Entertainment—if you are a hospital regular, you know what their TV setup is. Ours has VCR’s, no DVD players, but they do have TV’s with RCA inputs, so we connect a video iPod. We put The Boy’s favorite shows and movies on it, so that we don’t have to bring a bunch of DVD’s or tapes with us. Be sure to have the right cords to connect your player to the TV. The 5th generation video iPod uses a standard camcorder cable with a stereo jack on one end and three RCA plugs on the other. If you don’t have a video MP3 player but you do have a laptop that comes with you, try making files of several video favorites. As for toys, crayons and coloring books and stickers are favorites with us. Beyond that, try to bring toys that are easy to clean with wipes. If your child spends any time playing on the floor, you'll want a playmat, especially if he is not walking yet or is new to walking. We have this one but shop around because you can probably find similar ones for a better price. We also have one that is just four pieces. It is easier to deal with, but it doesn't fit in the bag.
There is a companion post coming up about procedures and how to handle the hospital, and what to ask for, and what to do yourself.
The Boy woke up during just about every change and apparently would only be settled by me. And he also woke up an extra time right in the middle. He'd get just SO MAD and as soon as I sat with him, he'd snuggle up and start drifting off. But he had to have my arm to hold, as if it were his blankie.
The extra complicated part was that I didn't want to spend the first part of the night sleeping in the bed with them because I wanted him to get all the IV fluids out of him, because IV fluids + toxic pee can easily lead to toxic leakage, and no one wants that. Especially me, being pregnant. I'd go in the room and fight sleep which was the opposite of what I really wanted to be doing. The greater concern is really the fluid and chemo combination, not so much just the chemo, because on his first regimen, we didn't have any problems with diaper leakage when we were at home. If he did get any IV fluids, it was only for a few minutes earlier in the day and was generally not an issue by bedtime.
I can't believe how easy this hospital stay was for all parties involved. Except for the whole Mr. Up All Night thing.
Right now, The Boy is looking great and feeling very much like himself. He came into the treatment with excellent numbers, so it will take a little time for him to start feeling like garbage. We have to start up with Neupogen again. Not looking forward to it.
Anyhow, I still have to get to the whole hospital post. Coming up.
Tuesday, March 24, 2009
Anyhow, the evening was just fine. The Boy slept until dinnertime, ate a reasonable amount at dinner, and then was excited to play on the mat with Mommy. We watched lots of our favorite things, and we clapped along.
Very cute: we had Babysongs on, and there's a song called "So Big." He is already able to reach out with his arms when asked, "How big is The Boy?" In this particular song, in all the verses, it says some variation on "Is he bigger than a flea? Yes yes yes! Is he bigger than the sea? No no no!" (bigger than a fly/the sky). When the song said "no no no," The Boy said it too!!
There was a twist in his tubing that, had we not been leaving, would have warranted some new tubing. As it was, I had to keep holding it to straighten it so that his IV pump wouldn't beep. This was especially important as he was getting his last medication through the IV. As the nurse was removing the tubing, I sang "I Got No Strings" for The Boy, which was mildly amusing to him.
Daddy arrived at the hospital just in time for us to get set to go. The Boy didn't really want to leave--he decided that he'd prefer to raid the refrigerator and take out the toys that were being put away. He was crying about leaving. Of course, he had also been crying about having to be held for his port de-access before Daddy arrived. Sometimes, he just gets mad.
Five day chemo in five days!!! So nice!!! I think that the doctor understands that we really want what is best for our boy and that staying overnight an extra night is just so hard for everyone. At least I hope she does. Initially, she said that we shouldn't really expect to do the five day chemo in five days. But it didn't really seem that hard to get it to happen. The biggest issue is making sure that he gets his initial chemo medication in a timely fashion, as soon as possible. If starts late on one day, they move it a bit earlier next day.
My next post, which I may start working on now or I might just go ahead and sleep and work on it later, will be a list of items and information for parents of toddlers who need to be hospitalized for any reason. One of our new friends who has recently begun the cancer journey was across the hall and we didn't even know it!! I happened to stop by because I heard the music therapist in there, just poking my head in the window. The mother of the little boy said to me, "Oh hi, I sent you a text." I'm thinking, why is this person sending me texts--does she think I'm someone else? As it turns out, we had never actually met face-to-face but she recognized me. We talked on the phone, and my mother had met her and given her my number in the first place. And no, I didn't get her text, because all she had was my landline which doesn't get text of course. I proceeded to send her a message from my phone so that she'd have my mobile number. At any rate, the hospital thing is a lot to deal with and we've had great luck bringing the things that we do and asking for several things that we need. They don't give you anything or help you with anything if they don't know to do so.
Thinking about it, I'm going to catch an hour and fifteen minutes of ZZZ's before I have to get up and change a diaper. Later.
A 5 day chemo that takes 5 days? Not banking on it until we are gone but it looks that way. Sweet.
Complaints were lodged about the late chemo.
It is now 11:20 and no chemo yet. The nurse said that she asked for it first thing. The doctor also asked. We need to make friends with someoneu in pharmacy.
I still think we'll be out tonight. Just much later. Might be easier, because we can wait for Daddy to help us get moving. Of course, this assumes that all is well.
Monday, March 23, 2009
As they slept, Grandpa and Daddy left, and I sat around for a bit reading email and the like. Then I made sure that everything was set for nighttime--enough diapers, wipes, and cotton balls set out; toys and playmat cleaned and put away (even though he'll probably wake up at some point and want to play in the middle of the night but at least everything is clean now); water available for Grandma, which she needs to drink because otherwise she'll cough a whole bunch and no one needs that; and just some general straightening. 8:00 is the next diaper change, after which I'll get going.
Have I mentioned that The Boy is REALLY cute?
Being Jewish, that really takes the fun out of Christmas.
Anyhow, The Boy slept for about two hours in the afternoon. When he woke up, he had rice cakes, some applesauce, and some yellow jello. All okay. Both Grandpas were here, along with Grandma and myself. He decided that he'd like to bounce off the walls and be crazy man for awhile. Fine by us. He did not want to go out for a walk with Daddy even though he was excited to put on his shoes and socks.
He ate the rices when we had our dinner, and then, of course, his dinner showed up. We haven't given any to him yet because he's probably not hungry. Maybe in a little while he'll have a bit of chicken. Or maybe he won't.
Timing is an issue with meals here, as I complain about every time The Boy comes in.
We are still on track to leave tomorrow, probably in the evening. His doc says that she's kicking us out tomorrow, so we have that to look forward to. They will do a CBC/Diff (complete blood count, with differential) in the morning to determine The Boy's blood status. He'll get another dose of both chemo meds and a few additional doses of Mesna spaced out over a few hours (that's the medicine that protects the bladder).
It's just long.
Next chemo, assuming good counts, will be Easter weekend, as we mentioned. We'll go for counts before leaving for Harrisburg, for two nights of seder with Aunt M. The Boy will probably enjoy himself, although if he gets restless or tired, I am certain that Grandma will have no problem getting up from the table to play with him. Possibly we'll feed him before the seder and take turns playing with him in the living room, bringing him to the table for the good songs and games.
My job over the next few weeks while he is working the chemo out of his system is to teach him the Ma Nishtana. I'll put it on the iPod and play it in the car, and I'll sing it to him. Obviously he doesn't REALLY need to know it at his age but if he gets familiar with it, he will want to clap along or conduct when he hears it, which will be very cute.
As I mentioned, I am not yet too concerned about the throwing up because it only happened once, and he was trying to continue to eat pretzels right after it happened. He was upset, but only because he didn't like getting cleaned up and messed with. So he is probably fine. Just the same, it always makes me a little nervous, because I worry about it happening again and him not wanting to eat/drink...and if he is sick and not wanting to eat or drink, the doctor will not want to send us home tomorrow after he finishes his chemo and his medicines that go with it.
It's just so much healthier for all of us to have him at home. He sleeps better, as do we.
He doesn't look pale at all, so hopefully his blood is still fine for now. This chemo, even though it can be rough in terms of immediate effects, has actually been less harsh on his blood, in previous experience.
It shouldn't surprise me that he would start to feel less like himself as he progresses through treatment although with the exception of lunchtime, he has still been a little impy boy.
Sunday, March 22, 2009
In other news, it was another day where The Boy slept a lot during the day and will likely be Mr. Up All Night.
We had a lovely evening. Friends came to visit, one of whom was a baby. Little kids can't visit the patients unless they are siblings, but we enjoyed a pizza dinner in the lobby and switched off keeping the two sweet little ones company.
A lovely surprise: The Boy's sitter from when he was little-tiny walked off the elevator, with her son, on her way down the hall to see her mother who was on the same floor (obviously not in the same wing...). She watched The Boy on Tuesdays during marching season, when Musical Daddy had to be up north at 2:30 we needed someone to cover the 1.5-2 hours between the time he had to drop him off to when I could pick him up, after work. I hadn't seen her in awhile although we've been in touch. She and I are both expecting child #2 around the same time. After she went to visit her mother, she came back to the waiting area and I brought her in to see The Boy and Musical Daddy. Grandma came back in soon after. She and my mother and I talked for quite awhile and played with The Boy, who was just extra charming.
Rice, along with some spinach, are working just fine for The Boy. Right now the turkey coldcuts are also okay.
I think he looks a little puffy from all the IV fluids, but other than that, he still looks relatively happy and...well, healthy is not quite the word you'd normally use to describe someone on chemo but if you did use it, it would work. He is still pushing up to stand and walking as he has been, which has made it a little bit more interesting to contain him. He is more aware of his surroundings and understands things like...the fridge has food, and that door over there leads to the outside and going for walks. The Boy went for a walk in the hallway, with Daddy, and I suppose we can make that a regular thing (although The Boy must wear shoes and wipe off on the way back in the room) if he requests it. And requesting is something that The Boy has no problem doing.
For example, he wanted a little bite after dinner, and Grandma gave him a rice cake. No sooner did it hit his tray when he said "honey" several times, clear as a bell. And he didn't even see the honey, but he knew that rice cakes and honey belong together.
He definitely doesn't seem like quite himself, but he's certainly above average, for him. And we'll be glad to have him stick out this hospital stay in a similar fashion.
Saturday, March 21, 2009
As it stands, chemo weekends are almost a break for me, with other people picking up so much slack. Of course, much of the aftermath is my responsibility.
But it's not that bad. He is so sweet and so impy. He really gets a kick out of the extra attention, and it enriches his life to be so connected with so many people. He is lucky. So are we.
Today we looked at a swingset, and we are so excited! The Boy and IYH Baby Bear will have an awesome place to play. Also of note: the same manufacturer made the swingset that is now at the White House. Hey, if the President's daughters can have it, why can't The Boy?
I'm typing this on my iPod, which is not so easy. I'm going to wrap up now. Later.
He ate his little cheese omelette for breakfast and as far as I know was fine with it. He was uninterested in the waffle and the cream of wheat. Hopefully it's just a matter of his tastes changing very rapidly and strongly.
Which brings up another issue--keeping up with them! I know that toddlers change food preferences frequently, and a few weeks of eating something many times can easily be followed by a flatout refusal. I am speculating that The Boy's experience is a little more like what some women experience during the first trimester of pregnancy. I have had decent luck in that regard, although the smells of certain foods would, indeed, turn my stomach.
The difference between a very young semi-verbal cancer patient and a pregnant woman is that a pregnant woman knows enough to find something that she will eat and can decide for herself what she likes and what she can handle. There have been days where I have eaten no meat at all simply because I really felt unable to deal with it. However, while The Boy's verbal skills and methods of communication are improving, he does not possess the ability to say "Daddy, I don't feel like eating that pasta even though I used to like it a whole lot--may I have some bread and honey instead please?"
Even though most of the time, parents should avoid playing the role of the short-order cook for their children and, within reason, should expect them to eat their desired portion of what is put in front of them, we are in a position where we sometimes have to provide palatable options for The Boy even if we are eating something else. Right now, dark meat chicken seems to work for him. We were off of chicken for awhile (no reason...just because) and ate a lot of meat sauce instead. Now that we're back on chicken, he likes it. But only dark meat. He used to enjoy either type. Unfortunately, unless they are possibly serving a quarter-dark piece of chicken (which is why our trip to Famous Dave's a few weeks ago was such a success), restaurants primarily serve chicken breast in their dishes. Personally, when eating baked chicken, I prefer the dark meat. It has more flavor. The Boy apparently agrees. He also thoroughly enjoys eggs. When we first introduced eggs, he would have one for breakfast every morning. Then he decided that he was uninterested. We've been bringing them in and out of circulation, and now he is into them again.
In terms of fruits and veggies, he will tolerate having spinach mixed in with his rice, as I mentioned. Currently he LOVES grapes and watermelon, and he also enjoys dipping apples in honey (there's a song about that...).
Friday, March 20, 2009
The Boy LOVES this 25-minute HBO special called Classical Baby. It has several famous pieces of classical music with adorable baby cartoons, complete with an animal orchestra and a baby conductor. We don't force this stuff on him in order to try and make him smarter; he hears it frequently and he gets into it on his own. He conducts when he hears some of the more rhythmic music. He enjoys the pictures and the music. We've got bigger things to worry about than the fact that our son watches too much TV.
Anyhow, dinner didn't work out for him tonight, unfortunately, having come back up after a few bites. and of course I have to try to rationalize and figure out why. It could be either a chemo reaction (not unlikely, considering that this stuff is nasty), a STRONG dislike for something that he used to enjoy eating (which has happened on occasion for no other reason), or (please no please no please no) an illness. Usually after he pukes once, we don't worry until it happens again. If it happens again, then he goes on his extra-boring diet. If not, we figure that he just didn't like something or he was feeling icky for that moment. Fortunately, the boring diet still includes rice cakes with a dab of honey.
Aside from that, everything is going just fine so far. I'll be glad to write more, but it's time to watch Battlestar.
Pretty typical day for us, if less active. The Boy napped from 11:30 to 1-ish. They didn't bring lunch until I asked where it was. Grr. We shared an apricot bar while waiting. When they did bring food, The Boy and I ate well. He had a little chicken leg and thigh, which he ate all of, and rice, corn, and even spinach. He likes rice enough that he will tolerate some spinach in there. Iron is good. I got a turkey sandwich and a banana. Usually I can get away with ordering enough for both of us at each meal.
We are excitingly awaiting the arrival of Grandma and Grandpa (my parents) from Pittsburgh. I love having them around. Musical Daddy's father was extremely helpful as well. We are lucky to have them. They are the best. The Boy loves all of them, and they make everything better.
I was barely on pace to make it as it was when I noticed Musical Daddy's phone on the bathroom counter. He was gone and was supposed to go on a trip. He needed it, no question. I rushed us out of the house and went to his school. Luckily he answered his office phone. What I should have done was to get our stuff and then go, but I didn't realize that we had that kind of time.
So, instead of 7:45 it was closer to 8:15, even though we didn't leave the house too much later. But then there was more traffic and...and...
Our late arrival meant a longer wait in admitting. There was a delay in getting the room. Which meant that they didn't get anything started until 10:30. Port was accessed at 11:00. Hydration check at 1:00. Chemo begins this afternoon, instead of this morning, pretty much guaranteeing an extra night here. All over a delay of a few minutes.
Now I know to talk to Patient Relations when we have issues in admitting.
The Boy seems to be feeling fine. He was naturally a bit antsy at all the waiting.
More updates to come.
Thursday, March 19, 2009
Anyhow, it's been fun to go without the hospitalizations for awhile. Calendar check reveals that if he stays on schedule, he'll be in for Easter weekend (3 day), 2 in May including Memorial Weekend, (both 5-6 days), the weekend that includes the Walk-A-Thon, and July 4th weekend (both 3 days). That will take care of Consolidation Phase and the first of six Maintenance Phase cycles.
Yes, that means that he'll be in for chemo when I'm due to have Baby Bear. Of course, The Boy couldn't read a calendar; why would Baby Bear do the same thing?
I'm not sure if he'll be delayed in his treatments during any of this time. Anything is possible, of course. We could continue having the good fortune that we've been having, to stay out of the hospital for all but scheduled visits and just have the occasional long outpatient day. Keeping everyone's hands clean and ascertaining his good days for either immunity or appetite (because one may be good while the other is not) or both has so far gone a long way. Or, we could have some issues. He could have delays because his counts don't recover fast enough. They check him frequently, but still, things change quickly.
So...we'll be doing this thing, starting tomorrow. At least we are making progress.
Wednesday, March 18, 2009
I'm thinking that because she has a sister who is 9 months old, she is often wrestling with the "babies aren't allowed" issue. The whole thing didn't bother me in the slightest.
It was nice to see the other moms although it was a bit disappointing that there weren't any other kids who were at The Boy's age/stage. It was also all girls except for him, but he didn't seem to notice that. One mom who has two boys didn't make it because one of them wasn't feeling well.
It was great to see The Boy walking around and playing and having such a good time! He picked up toys and threw a ball around and swung a bat, and he just went exploring when he was done with all that. Tromping around like a little man...so cute!
Tuesday, March 17, 2009
Gone are the days when The Boy would sleep until 7:30 and doze in bed watching TV until 8. This week, he has decided that he wants to have breakfast with Daddy. Not such a bad thing--I do enjoy the extra few minutes of time that we get to spend together as a result of this change. However, I like sleep. It is good.
Today's sleeping pattern was completely different from what I wished would happen, with the exception of a morning nap making lunchtime with Daddy MUCH easier. He woke up at 6:20, fell asleep at 9-something after our shower (and he was naked, on the bed, with a bunch of clean laundry--talk about tempting fate!!) and napped until 10:30, fell asleep again at 2:45 in my lap and slept until we attempted to move him into bed so that he'd nap with Daddy--two days in a row that he has missed the Daddy nap as a result of drifting off too early, and then he crashed at 7:00, in my lap again.
I thought that since it was so early that he'd wake up within the hour, but he stayed there for over 2 hours before I tried to move him. Couldn't get anything done...I didn't even attempt to move him into his bed, but I successfully relocated him to our bed. I sat with him for 2 minutes and he was fine after I left. I was able to do the dishes and perform a cursory cleaning of the kitchen. I like to do a thorough cleaning once a week and a few light wipe-downs as needed. Well, let's quit lying--"like" is quite the overstatement.
Both the afternoon nap and his falling asleep for the evening were preceded by fantastic playtimes out on the driveway with sidewalk chalk. The weather today was just warm enough to go without jackets (which may be a matter of opinion; if I were walking with The Boy and he were in the stroller, he'd be wearing one), and tomorrow looks to be the same. Other than OT tomorrow in the early afternoon and orchestra for me in the evening, we don't have anything planned yet. We'll probably walk to the library or somewhere, just to go out, and so that I can get myself moving.
Speaking of moving, I probably mentioned that I have been impressed by The Boy's walking. He has been getting around the house by walking more and more. However, he still won't walk from the car to the store, or from the car to the treatment center. His oncologist reminded me that pretty soon I won't be able to carry him anyway, with my being pregnant and all.
I get the feeling that I'll know when lifting The Boy is too challenging, which may not be for awhile yet. And hopefully The Boy will be better at walking by the time it becomes an issue.
The only problem is that we'd be in the hospital during Passover for his 3-day chemo. Not a huge deal, because at least the nearby ShopRite will provide, as they have an excellent Kosher section, but we'll have to figure out what The Boy will be eating.
Monday, March 16, 2009
I would have remembered the numbers better but the nurse called while the PT was here and I didn't have time to process it. It's not tremendously important but the point is that he has good counts.
That means that we can go out and do stuff this week. That also means that it is likely that chemo will start on Friday. Then again, his counts could go down. Not likely, as they should have done so already as a result of the radiation. They were down from the beginning of radiation to the end, but still okay at that point, and up from the end of radiation until now.
In terms of The Boy's overall health and well-being (such as it is), radiation was much easier than the chemo that he's been getting these days. In terms of mine...well...it's really just the sleep thing that was difficult.
The physical therapist noticed major gains in The Boy, even from 2 weeks ago when we started. We haven't seen the occupational therapist in awhile, as last week she was sick (not too sick to work but too sick to be around us) and the week before that, our radiation appointment ran later than we thought it would. So she's only seen him once.
Weather report is pretty good for much of this week, except for tomorrow, so we'll be sure to spend time out and about. Possibly armed with sidewalk chalk.
Sunday, March 15, 2009
It is possible that he just can't be taken out to breakfast first thing in the morning unless he has some pre-breakfast before we leave.
On the other hand, his behavior in the supermarket has shifted in a positive direction. He used to dislike spending too much time sitting in the shopping cart and preferred to be carried. I'd put him in the sling or front-pack when he was smaller, mostly avoiding this issue, but once he grew larger, it was imperative that he ride in the cart. I'd avoid taking him to the store for this reason. Now that he is a little older and more interested in everything, he is great fun at the supermarket. I ask him to name things and he knows several of them. He has recognized apples for awhile ("ap"); today he actually said both syllables. Granted, it had the same sort of separation that the little kid in Meet The Fockers used for another word that sounded like apple but wasn't. If you've seen the movie, you remember.
After Daddy got home and we relaxed for a bit, we took The Boy outside for a ride on his tricycle. I have included the link. This is a great toy! We moved it to the second setting outside, which is a trike for pushing around. Mostly, he was interested in riding around on it by pushing his feet, but we tried a bit to get him to use the pedals. There is also a foot rest, but it doesn't seem as though it is in the right place for him. Also, he had only used it inside, on the first setting, which is as a rocker (so it doesn't matter where his feet go). Nevertheless, now that Spring is coming, we'll be spending more time outside!
It gets boring inside. We just have to be sure to put on sunscreen (for The Boy and for pasty-white Mommy) if we'll be out for longer than half an hour or so.
Saturday, March 14, 2009
Parents--you can definitely do this with your little kids if they have gotten over the tendency to put EVERYTHING in their mouths. Depending on their age and attention span, you might want to prepare more without them and then just let them help mix or put things in.
The second item was the assembly of one Superman Step Stool. At first, it seemed like a great idea to do with The Boy. It has small pieces, so again, not so good for the kids who like to put everything in their mouths. He helped at first, pressing down one piece into another and holding the various parts for me. He turned the screwdriver too. I don't know exactly where it went horribly wrong, but he decided to throw a fit while I continued to work. I guess it was because I took a piece from him on which he must not have finished working. I offered him several other tasks, but he wanted nothing to do with it. I even had to take a break in the middle because I felt that he was crying too much and I had to calm him down.
Perhaps he was already getting tired. Hard to say.
He didn't eat as much today. He had a decent breakfast of an egg and some potatoes. He had raisins a few times today. Lunch was a few bites of steak, a few grapes, and some rice cake. He had one of those horrible sounding burps, but nothing happened with that thank goodness. When snack time came around, I gave him yogurt and shredded wheat, since he hadn't eaten that today and yogurt is always a good thing. Dinner was spaghetti. I offered him some ice cream later on, but he was more interested in playing. Meh. He received two doses of Zofran yesterday and today, just in case.
Anyhow, I still haven't cleaned up the kitchen from baking; don't want that stuff to pile up.
Anyhow, we arrived early and didn't even purchase a ticket, figuring that The Boy wouldn't really sit still or be quiet enough for us to stay. I nabbed a seat in the back, hoping that no one else had been assigned that seat. He was a little antsy during the overture, but he calmed down and sat still as soon as the people appeared on stage. He fell asleep during the first act, maybe 20 minutes after the show started. He stayed asleep until about 30 minutes into the second act. There was a scene with police sirens, and there was clapping in the audience. Before he even realized that he was awake, he started clapping. He then sat up and watched the remainder of the show, not making a sound and moving only to clap his hands, kick his feet in rhythm, or conduct.
I am amazed at my child.
This is a picture of The Boy as a brand-new little guy. He has Musical Daddy's complexion here. In fact, he didn't look a thing like me when he was first born.
Compare that with this photo, of The Boy at 10 or 11 months old.
Of course, Musical Daddy had light hair (and lots of it!) as a little kid.
Anyhow, now back to BSG on TiVo.
Friday, March 13, 2009
They did not tattoo him; they decided that since he was only being treated for a short time, they'd just draw on him instead.
Coupled with a port that stayed accessed all week, that meant that baths would be tricky.
We kept the molded cradle. They didn't need it, after all.
Tomorrow morning, we sleep in.
I'll fix it when I write my memoirs.
The big idea is that these typically AP lifestyle choices aren't necessarily what cause attachment to form, but it helps. Especially when The Boy was younger, we would take him everywhere. It was important to us that he see all kinds of things and meet people. We saw to his needs so that he'd be more likely to be happy wherever we went, and we found that it worked well. He just fit into our lives naturally, without us having to force him.
To me, that's the point of AP. You don't have to give in all the time, nor do you need to be a super-selfless hero mom. You don't even have to do all of the things that I listed in the previous post. You just need to have room in your life for your children, and they need to know that from an early age.
Thursday, March 12, 2009
AP followers frequently earn the label of "raging hippie" to those who may not agree with the philosophies.
Attachment parenting is the basic idea that a child should form a secure attachment to his parents. A child who is securely attached to his parents will grow up to be a strong, independent person. He knows that his parents will be there for him and, thus, can venture out into the world (or the playground, or Grandpa's house) without being afraid. In his own time.
So what does that have to do with all of that stuff that I mentioned in the first paragraph? Very little, to be honest. Parents can do most of the things on that list, even all of the things on that list (and there are some that I might not have even mentioned), with the intention of doing what is best for their child, and not necessarily do so for the purpose of forming an attachment. Parents can also do very few of the things on that list but still set out to raise children who are securely attached to them.
I did read a blog on BabyCenter where the mother wrote about "detachment parenting" and I just don't think that she actually meant to raise children who are detached from her and don't care about her; she was trying to rail against her perception of the hippies with their attachment parenting, which to her means everything on the list above. She made a good point, saying that she could still be an attentive and loving parent even if she did not do those things.
So where do we stand on that list?
Breastfeeding--all for it, as long as the child wants. Children transition from milk nutrition to food nutrition at their own pace (which is why I'm not a fan of scheduled milk feedings or baby food). Even though I was relieved when The Boy was able to stop nursing after that horrible stomach virus we all had and with me being pregnant. If he wants to start again when Baby Bear is born, I probably won't say no.
Cloth-Diapering--love it. It's not that hard, and the diapers are so much cuter, not to mention that you don't generate so much nasty garbage. And The Boy doesn't get a nasty rash. That said, I don't think that cloth diapering does anything with regards to our bond with The Boy. He wears diapers. He does his business. We change them. No different than a parent who doesn't use cloth. Some say that children who wear cloth diapers potty-train faster and that it's better for them to do so. I wore cloth diapers as a child. We had diaper service. And I was about 3 before I was potty-trained. I know that the plural of anecdote is not data, but I don't necessarily expect The Boy to train faster.
Bed-Sharing--whatever works for your family. Whatever gets you all the most sleep. We started having The Boy in bed with us so that we could get more sleep (so *I* could get more sleep because he was nursing a few times at night), and it worked. He naps with us during the say and it is lovely. He starts the night in his own bed, usually, and then comes in with us. He loves the companionship. If he disturbed us at night, or if it were impossible for us to stay together in the bed, we'd be doing something else.
Baby-Wearing--I don't think I did this as much as many other parents did. I would sometimes put The Boy in the sling when I went to the grocery store because he'd get fussy in the cart. Now that he's older, he enjoys the grocery store because there is so much to look at and point at and talk about. When he was very little, sometimes we'd put him in the front carrier and just walk him around the house when he really needed it. Musical Daddy would sometimes mow the lawn with The Boy in the carrier. I never really tried to nurse him in the sling even though many moms swear by it. This is another example of something that we did that isn't necessarily about the attachment but that it just worked for us when we needed it.
Vaccinations--we planned to vaccinate The Boy on the standard schedule. We can't, of course, because of his immune system and the cancer treatment. Baby Bear should (hopefully) have no problems. I don't think that it's up to parents to decide that it wouldn't be so bad if more kids in the developed world got the measles. Perhaps disease occurrence declined because of overall better health. As the parent of a healthy food loving cancer baby, I'm just not buying it. Vaccines worked.
Cry-It-Out--I don't agree with leaving a child alone to cry for no reason. If a child is throwing a fit after misbehavior and it is clear that they are otherwise safe and fine, I see no problem with leaving them to calm themselves down if they are old enough to understand that that is what is going on. If The Boy is fussing in the carseat and I know that there's nothing otherwise wrong, generally we just keep on going and he gets over it.
Discipline--We're all about the love and logic. We don't yell at The Boy. It doesn't work. We move him away from things that he shouldn't have. We anticipate when he's going to get upset about things. We don't leave the house without a snack and a drink if there's any chance he might get hungry. We pay attention to him. He's a good boy. When he's older, hopefully he'll stay a good boy but he won't be perfect, so he'll receive logical consequences.
Other than that, everything was fine.
Following radiation, we stopped off at the treatment center for a blood draw, to check The Boy's counts. Everything was good. Whites are likely on their way down--they're kind of okay right now, so I think that we can go to the diner on Saturday for breakfast.
We could go in for his next chemo as early as next week but possibly in two weeks, depending on how his counts rebound. We'll have to come in on Monday to check again. We don't know how he will respond to radiation, not the same way that chemo response is predictable. This chemo will be five days (hopefully only five days) with Cytoxan and Etoposide. The next one will be three days, with Carboplatin and Etoposide. Thus will end consolidation.
It's been hard, getting up for radiation and disrupting everyone's sleep patterns, such as they are. That said, the extra weeks without chemo, even this week on radiation, have been great for The Boy! His walking has improved greatly, and he is saying so many new words! He can point to body parts (although sometimes when asked to point to his nose, he points to my nose instead!) and he says some more names of food. He has several words that he has said once or twice but hasn't repeated.
He also just learned how to open a doorknob. We're in trouble.
Wednesday, March 11, 2009
He slept most of the time in the hospital before his treatment and was actually given the sleepy meds even though he was sleeping already. Made it quite a bit easier.
He woke up but was uninterested in the pancakes that Grandpa brought. I was, however, quite happy to have them.
I asked Grandpa for help in changing one of my headlight bulbs. It's pretty tricky in my car for some reason, even though I've done it before in other cars. We spent WAY too much time in the hospital parking lot. The Boy was mad. I was mad, and I was mean to two old ladies who wanted to know if they should get security. Please--you see a competent looking man with a toolkit--you don't need security.
Picked up Aunt W from the train station. She was in NYC for a few days after having visited with us here and is back so that she can watch The Boy tonight while I go to rehearsal and Musical Daddy does the same. We had bagels; The Boy had yogurt, shredded wheat, and watermelon. He likes dipping the watermelon in the yogurt. Unfortunately, Aunt W missed him taking his bib off which was filled with both watermelon and yogurt; it made more mess than we would have liked. Oh well.
Naptime, then. Or so I thought. I think that The Boy likes the Classical Baby DVD too much to sleep. I dozed a bit on and off while he tore around the room. He can get up onto the bed now, which is fun. We should really stick with Goodnight Moon for sleep purposes, however, because nothing else does it better. Except, possibly, House. Don't know why. Maybe because he's seen it all before.
We came out here for awhile after it was clear that I was getting no rest and I started to fold laundry. The Boy wanted to sit on my lap and watch TV. Then he fell asleep. But wouldn't stay asleep when I moved him and could not be soothed back to sleep, either. Stinker. No rest for the weary.
Lunch was good, although late. Aunt W did some quality playing with The Boy, allowing me to fold laundry, finally. He also called her by name once. Of course, we could not get him to repeat it.
Currently, she is taking him out for a walk. I should be napping; maybe I'll try that now.
Only two more days of this. Then I sleep.
Tuesday, March 10, 2009
Join the team and walk with us!
Make a contribution to our team!
Also, in case you are concerned about your walking ability...since I'll be about 3 weeks away from my due date with Baby Bear, I'll be heading up the B squad. We'll go VERY slowly.
We were out the door around 8:30. It took a little longer than we thought for transport to come to take him back to the same-day surgery unit, but beyond that, everything went fine. We're more than halfway done.
As soon as he was up, The Boy had some juice, yogurt, and a fruit bar. When we got home, I made us a cheese omelette.
I'm VERY tired and I'm hoping that he'll want to nap soon.
By the way--yesterday The Boy said "iPod." Seriously.
Monday, March 9, 2009
This evening I decided that The Boy and I would attend the Megillah reading at our shul. Purim began at sundown, and it's a fun holiday that involves costumes. Like this one:
The Boy wasn't too keen on the hood, which was why he was trying to remove it.
The reason why it is so much fun to attend a Megillah reading is that every time the reader mentions the name of Haman, the villain in the story, those listening make a lot of noise to drown out his name. The Boy likes noise, so I thought he might enjoy this. He even got his own noisemakers. In addition to shaking and rattling the noisemakers, people would also say "boo" about the villain. The Boy caught onto this pretty quickly. When asked "What do you do when you hear Haman?" he now says "boo!!!!"
Glad we went.
Interestingly enough, a little boy, about four years old, was fascinated by The Boy and his little Tigger costume. He was trying to get a response from The Boy and was trying to sign "Thank You" to him. The Boy did it a little bit. He then tried to touch The Boy's hand, and I pulled away. His parents said something about little kids and how their hands are always dirty and in everything. That bugged me (true though it may be) because my kid gets his hands washed/wiped frequently. My response? "Actually, he's a cancer patient and really shouldn't be touched by a lot of people." They were done with us. Oh well. Bye.
He is 33 inches tall and 24 pounds. The doctor asked questions about various milestones and skills, and he's doing fine with everything. I mentioned that The Boy had started PT/OT and was already responding. Again, not sure if it's just good timing. I also mentioned the one issue with the evaluation and the task of giving the babydoll a bottle, saying that The Boy didn't have enough of a frame of reference for babies getting bottles in the first place. I compared it to my favorite cultural bias example--the children in Snowshoe, PA who were asked to name the four seasons (you mean they aren't Buck, Doe, Smallgame, and Trout?)
I reminded the doctor that Baby Bear would be arriving probably at the beginning of July (who knows, right?). Hopefully Baby Bear will be a more typical patient...
3 treatments finished. 4 to go. We should get out of there at about 8AM each time this week, but today it was 8:30 because of the delay. Additionally, the port worked fine both ways. The Boy will stay accessed all week, so we'll have to be careful, knowing that the needle and little tube are in place.
The Boy seems to have something of a diminished appetite, and less of a taste for meat. I can sympathize, as I tend toward the same thing while pregnant. This morning I brought him a fruit bar, which he ate half of, and a little container of YoBaby yogurt. We usually buy the big container of yogurt and give it to him in a bowl; that doesn't travel so well, so I bought the little ones. He ate about half of that. Of course, he was thrilled to have his little juice box with white grape juice in it. As long as he keeps drinking his juice and eats some, I'm not too worried. He'll bounce back.
Sunday, March 8, 2009
Saturday morning was the pancake breakfast at Musical Daddy's school. Can't go wrong with pancakes and eggs, two of The Boy's absolute favorite things to eat. We had to get second helpings of everything because he ate all the food!
He's really getting much better at walking. He can go all the way down the hall, or across a room, but not reliably yet. I'm looking forward to him not really crawling anymore. I know it will happen eventually, where walking becomes his primary mode of transportation. It's just much easier to keep his hands clean when they don't spend so much time touching the floor, as they do when he crawls or when he pushes up to stand.
I'm not sure if the PT/OT is what has gotten him going so well or if it's just good timing.
Anyhow, it was amusing and endearing when The Boy kept on walking from where I was standing in the doorway to the stage where Musical Daddy was performing with his band. This is a boy who LOVES his daddy.
When we got home, The Boy was asleep. Not unusual for him to fall asleep in the car, although the trip from where we were to our house is less than 10 minutes. Even more unusual was that he stayed asleep when we brought him in from the car. The aunts wanted to nap as well, so they went back to the guest room, and we put up the gate in the hallway so that The Boy didn't wander too far once he woke up.
Musical Daddy and I went for pedicures yesterday! I have gotten a pedicure twice before yesterday and have always been pleased, although it is a luxury and not something that we'd do frequently. Musical Daddy hadn't had one before but had been complaining about his feet being gross. Many men have rather gross feet. The salon actually charges more for men's pedicures, probably for that reason. He seemed to enjoy it, and his feet felt better afterward. I always love the way that my feet and legs feel after a pedicure. It was nice, also, to get out, just the two of us, for a brief period of time.
As it turned out, The Boy and the aunts were asleep when we got home. We joined them.
We ladies went to the movies after our nap while the boys went to the comic book store. We saw Madea Goes to Jail. Good flick, depending on the audience. I enjoyed it, and since Madea is a favorite character in our family, we probably laughed extra. We could all use extra laughs.
Musical Daddy had his show again last night. The aunts convinced me that we should go out to dinner. I was hesitant because I was unsure what The Boy would like to eat and not sure how he'd be feeling...but the thought of spaghetti made the decision pretty easy. We had a lovely meal, and The Boy was well-behaved. He enjoyed his spaghetti, as I expected. We had desserts as well. My peppermint pattie pie had some ice cream in it, of which he had a few tastes.
Bedtime was a struggle. He was SO tired but did not want to sleep. Fortunately, Musical Daddy got home and had more success. We're still putting him down in his own bed and letting him come in with us in the middle of the night (which is sometimes after we've gone to sleep but sometimes not). It still works this way.
Spring-forward is SO early...but it isn't as though we have a choice. The Boy was up at 7AM, new time, but eventually went back to sleep until 9. Breakfast, playing, and medicine were on the morning agenda. At one point, The Boy went into the bathroom and Aunt W couldn't figure out why he wanted to be in there, and I realized that he hadn't brushed his teeth yet. Maybe he remembered; maybe he just felt like doing his teeth. Or maybe he just wanted to play in the bathroom. Who knows?
At any rate, it was a fun weekend with my sisters and a relatively relaxing one as well. And nothing medically interesting. Thank goodness.
Friday, March 6, 2009
2 minutes later he came out into the hall all grins and giggles, after having silently gotten out of bed.
I think he was pretending to sleep.
The anesthesiologist today did not meet us in short stay as is usually the case. We saw him as soon as we got to radiation. To say that he lacked proper bedside manner would be the understatement of the year. He insisted that we take The Boy off of the bed, away from me, before they were actually ready for him. The other anesthesiologists had sedated him while he was still in my arms. He was already crying a little bit because he saw the machines, and as soon as they put him on the table he was hysterical. Unnecessarily so. The nurse said that I could pick him back up, once she figured out that they weren't really ready. They asked for him to be put back down, and I complied once I was sure that they were actually about to get started.
It was needlessly upsetting for him and for me. It's hard, regardless, to see him with the machinery and such, but it was a little easier when he isn't taken from me crying.
After they finished the treatment, the anesthesiologist insisted that The Boy be put back on the bed by himself instead of being given back to me. Again, completely different from what was done before. It's an ordeal regardless, and it's not fun for him, but at least it takes some of the stress off of both of us when he goes to sleep in my arms and wakes up there too.
The doctor and nurse knew that it wasn't right, and I reminded them that I was very unhappy with the way that everything had gone. They assured me that they had complained. We didn't need to hang out for very long; we did need to go to the treatment center to address an issue with The Boy's port. As soon as we got there, the nurse said that she heard about our troubles. She went to check the port and, of course, it was fine. He was going to get the TPA put in, and then we'd go to breakfast and come back, but since he didn't need it after all, we were just able to leave.
Breakfast with Grandpa was fun. The Boy was a little rambunctious because he was SO hungry!! He ate more than one pancake, his egg, and a few bites of toast with jelly. The toast was too hard to be worth the effort for him. He punctuated his meal with a nice poo. Of course, no changing table.
I returned to the treatment center, which was down the street from the diner, to pick up some info about a walk on June 13th, and changed his diaper there. We went from there to the airport to pick up my sister.
It's supposed to be nice out this weekend, so we'll hopefully spend time outside.
Thursday, March 5, 2009
Which is either 1 of 6 or 1 of 7. We don't know for sure. The pathologist at CHoP, and the radiation oncologist there (who is supposed to be THE guy), thinks that The Boy should get 7 days instead of 6. Crap--I thought we were done with CHoP.
The surgeon that did The Boy's second surgery also said that since there had been a positive margin after the operation, he thought that the radiation should be given on the right side as well. I don't mind it--I'd rather that he get both sides.
Today was a tricky day. The Boy was rather antsy for part of the day, although he didn't complain too much about the lack of food. I distracted him and pretty much kept him out of the house so that he wouldn't be reminded of food. A side effect of this whole exercise was a lack of napping.
Musical Daddy invited me to bring The Boy to his school to play drums and such, as something else fun to do to keep his mind off of food. The children were amused. And impressed. His bass drum playing was really not bad; I've heard worse from 6th graders.
We met Grandpa at the hospital and checked in at Short Stay. We wanted to, rather, but they didn't seem to know we were coming. The lady asked if we had an appointment. Sure--like we just come here for fun. Radiation oncology even called looking for us, because it took them so long to figure out that we were, in fact supposed to be there. Grr.
The Boy's port didn't give a blood return again, even though the saline went in just fine. Also annoying. They left the port accessed, but tomorrow they're going to put in TPA. I don't know what that stands for, but basically it stops the port from being a one way deal as it has been for the past 2 days. He'll be de-accessed tomorrow, and then on Monday when they access the port again, they'll leave it in for the week.
It didn't take very long to get back to radiation. The anesthesiologist was one that we'd had for The Boy before, and he and everyone else were very nice. The doctor had stickers for The Boy, which ended up all over his head, on Grandpa's hand, and on my nose.
I went into the room, which was a different room than yesterday, as they were prepping him for positioning and treatment. It was scary, a little bit. I think I was in there for longer than I usually stay when it comes to his procedures (it took quite awhile to get him positioned). They had made the mold yesterday in which he lay, but they also had to tape him a lot. I guess it was just the sight of him, asleep from the anesthesia, looking so helpless and so little on that table, that made it difficult to watch.
There was a monitor outside of the room. I brought Grandpa back to the area where the monitor was so that he could see it, and he even snapped some photos. It would be great if every picture of The Boy were cute and funny and sweet, but it is not an accurate representation. Although he is still sweet, even with the mask on and all the machinery.
I asked--we do get to keep the body mold. Not likely that they can do anything else with it.
It didn't take too long, maybe a half-hour, but it was awhile before The Boy woke up. Once again, he wanted that nap that he hadn't gotten.
By the way, radiation oncology has good food! In the morning, there are bagels and muffins. When we were there today, there was chicken noodle soup. Coffee and tea all day, of course.
Tomorrow is the first of 5 (or 6?) bright and early treatments. Not even bright because after this weekend, daylight savings time kicks in, and we lose the part of the daylight that we actually need. Doesn't really matter to me what time it gets dark because we don't go many places in the evening. The treatment itself is at 7; I am supposed to get there at 5:30. Since it shouldn't take long and The Boy should probably wake up more easily after such a short procedure, the visit should be over quickly. Then we stop by for the TPA, and we go out for a nice breakfast.
We are picking up my sister at the airport tomorrow, around 10:30. My other sister is coming in the evening. We'll have a fun time. Musical Daddy is really busy this weekend, so I'm glad to have the help.
Wednesday, March 4, 2009
The 4:40 breakfast of a cheese omelette and pancakes was very well received. As I said, I made him an offer he couldn't refuse. He wasn't thrilled about being woken up, but I brought him right out to a plate prepared for him, with a cup of juice and his bib and hand wipes all ready. He didn't have time to protest. I changed his diaper and, since he was awake at this point, watched the 5 AM showing of Sesame Street with him. Thank goodness for Sprout.
At 5:40, when the "Elmo's World" segment began, I figured that he'd be ready to come back into bed, which he was. We stayed asleep until almost 8:00, which was nice. We woke up, got dressed, and played with Play-Doh. Then we left to head in the direction of the hospital. I got my breakfast at the Dunkin' Donuts drive-thru, and we arrived at the hospital around the same time as Grandpa.
Thank goodness for Grandpa.
The Boy did quite a bit of walking while holding our hands, although we picked him up for the snowy/icy parts. He walked quite a bit more with us inside the building. I checked into Short Stay while Grandpa hung out with The Boy. He showed Grandpa the fish. He also demonstrated how well he participates in the reading of Pat the Bunny. His favorite page? Peek-A-Boo with Paul. New trick: during the part in "Judy's Book" where it says "shh--bunny is sleeping" he has begun to say "sshhh" too. Just like when we read Goodnight Moon and he calls the book "hush" which is said at the appropriate places as well.
I was expecting The Boy to be less happy than he was after having not eaten for hours, but he really was fine. I think that some of it is our perceptions from the first few times he has required sedation, when he was still an infant who nursed 'round the clock. Even when he was nursing as he got a little older, it became easier although sometimes I needed to be elsewhere for awhile.
One of the nurses from the treatment center came to access his port. The saline went in just fine, but the blood just didn't want to come out. They needed blood for the CBC, so she had to do an additional blood draw, from his arm. I didn't mind it as much because I know that she is great at blood draws and can find a vein without poking repeatedly or causing any more pain than is necessary, but it was still less fun.
We didn't wait too long to be taken down to Radiation Oncology. It was a long trip though. When we got there, we had to wait a little while for the anesthesiologist, but the doctor, nurse, and the radiation techs were SO very sweet and were quite taken with The Boy. They found him to be very cute and charming...
...and I feel a little better about this process because they really seem like they've taken an interest in him and will take that much more care of him. Of course I'd hope that they'd be as sweet and kind to every patient that walks/rolls through there. You almost have to.
Today's procedure was a CT scan without contrast for purposes of mapping out the treatment. They also made a mold of his body so that he'd be in the exact same position every time. Musical Daddy wants me to ask if we can keep it after he is done with radiation. I doubt that they'd need it again, so I don't see why not. Grandpa still has the cast from his radiation treatments. It hangs in the garage. I thought it was some sort of sporting equipment.
We were in the room and he was in my arms when he was given 2 mL of the sedation drug. He conked out right then and was moved onto the CT table. Grandpa and I were then escorted outside to wait.
Note to self: do not leave anything, especially shoes, in Short Stay. It is too far. Just put stuff on the bed that comes with us anyway.
We probably waited for 20 minutes for the procedure. We went back into the room and I joined The Boy back on the bed/stretcher. He was still out. He took awhile to wake up; they theorized that he had drifted into a nap of his own even though the drugs wore off.
We waited around. He woke up and was back to himself within a minute or two. We returned to Short Stay and waited and waited. There was a question about the port, whether anyone needed to check it since there was no blood return. They elected not to worry about it. I took out the port needle myself, as I was trained to do so. Eventually, we were on our way.
It wasn't that bad, really. Tomorrow will be a similar amount of time, although this time The Boy's last call for food is 8:00, and he has to miss lunch. That will NOT be fun. Musical Daddy suggested that we drop by school at some point, and I think I'll take him up on it. Anything to get The Boy away from thinking about food!
After that it should be easier--just REALLY early. Probably on Friday we'll follow the treatment with a nice diner breakfast. Or, for that matter, a nice hospital cafeteria breakfast. I know that they have some good eggs and corned beef hash.
My sisters are coming to visit this weekend. Actually, one is on spring break and will be here for longer than the weekend. The other has to go to work so...
Also, Saturday morning is a pancake breakfast in Westfield. The Boy simply MUST go to this. I've heard that he loves pancakes.
Tuesday, March 3, 2009
It says for ages 3 and up but if your child doesn't put everything in his mouth and you supervise the activity, it is fine for younger kids who should be working on fine motor skills.
The color wonder markers and fingerpaints do work on the special paper, but it doesn't show up right away. It takes even longer for the fingerpaints than for the markers, but in both cases it is difficult to know exactly what you've drawn.
The fingerpaint doesn't quite have the consistency of fingerpaint. It is more waxy. Like a partially melted candle, but greasier. I'm not sure I would want that stuff on my sofa either.
Also, with the set that we bought, the Go Diego Go set, the colors aren't great. It comes with brown, peach, orange, green, light blue, and dark blue markers. The fingerpaints are blue, orange, light green, brown, grey, and pink.
It isn't terrifically expensive and may be worth a try but personally, I'd rather that The Boy stick with crayons for now, because they aren't too messy either and he can see what he has drawn without waiting for the color to show up. It toys with his sense of cause and effect not to be able to see the colors.