Day 21 Chemo Round 5

It was a full day today.

Asher and I were gone from 7:30am - 4pm.

He had LOTS of blood drawn first at clinic andv then the oncologist came in and chatted with us and checked out Asher (best he could, Asher wanted nothing to do with an exam today, all he wanted to do was go to the hearing test - he had been excited since I told him about it yesterday, going to bed saying he was going to listen to the birdies and froggies). The oncologist suggested that Asher might have had rotovirus which then passed on to the girls as quickly as it did, and probably why I never got it (although Scott got one part of the virus, so it seemed, as he and Asher both had symptoms when they got home last Saturday).

He said Asher's MRI came back clear, no tumors visible in MRI!

He said his counts are super! Going from memory as I didn't get a print out:
Platelets 185
Hemoglobin 11.6
WBC 3.6

So, as far as he is concerned Asher looks great!

Then we went to the hearing test. Asher can hear more this time than last time, although I didn't get a printout here either, so going from what the gal said, "We'll keep tracking it to see." So maybe he's back to only being minus high frequency hearing, but I'm not positive on this, and how the tests work and how hearing is affected by chemo and daily stuff is really quite interesting.

Then we met with a doctor that did Neurodevelopmental Tests with Asher....I wasn't allowed in so I have no idea what she did! I wasn't even allowed to watch. VERY BUMMED about that! I guess the doctor played games and did puzzles and what-not with Asher. He didn't have much attention span for this, needing a break 1 hour after starting and stopping all together after 1 1/2 hours. He has to go back and do more on Monday. It is required in the protocol, Head Start III, that we track the results from these kinds of tests, that is why he is doing it. I have a BUNCH of paperwork to fill out on what Asher can or can not do, think, say, feel, whatever, that I have to turn in before he goes to transplant. I did most of it while waiting for Asher.

Then I was trying to get Asher to drink this 20oz (sport drink size bottle) of BLUE contrast for his CT scan. I kept treatening him to either drink it or he'd have to have a NG tube. That's fun. Part of being a mom and taking Asher to hospital tests....I hate threatening him but it WAS honest. He either had to drink it or we'd have to do a NG tube and then put it down the tube into his tummy.

When I first picked up the bottle of stuff, I told the gal at the desk there was NO WAY Asher would drink even half of that bottle. She said to get him to drink what we could. So, at check-in, around 12:45, a radiologist gal came out to talk to me and I said Asher MAYBE drank 2oz so far (after I found a straw to put in the bottle, that kept falling down into the bottle) and I was trying to get him to drink more from a sippy cup now. She said, "You're going to be here a long time then." Nice. Then we discussed a little of why Asher was getting a CT scan, and about him drinking 20oz of fluid. She said she has never had a problem with any cancer child, 4 years old or not, drinking 20oz of the stuff. I was shocked. Really, could my son be the only one who wouldn't drink that much in an hour, let alone half a day, only 2 1/2 weeks post chemo treatment and only 5 days post vomitting every day. Arg. THEN, this was the kicker, she told me he had to have the scan because they were looking for tumors in his colon before going to transplant. I said, he had a tumor in his brain. She said, yes, but his cancer is a spreading cancer. I said, sure to his spine and it is clear via MRI two days ago. Then I tried to tell her that he had inflammation back in September after infection in his head, etc etc....mind you, all out in the waiting area for other patients and parents to hear. At that point I just felt way to frustrated and stopped talking. There was no use in talking with someone that didn't even know Asher's case.

She said to let them know when Asher had drank 1/2 of the bottle and if I needed HELP to have the gal at the desk call for her. She went away then and I took Asher in the umbrella stroller for a walk. Went back to clinic, talked to the social worker to vent....also trying to get a hold of the transplant coordinator to confirm they were just getting a baseline to make sure had no inflammation of his gall bladder, intestines, bladder, or pancreas, and to have her tell radiology that. So....an hour later....Asher had all what he was going to drink (threatening me that he was going to throw up)....and it was probably 9-10oz of this blue crap (which, by the way, stunk, so unless it was in the sippy cup, he gagged every time he had to take the straw and try to drink), and he fell asleep laying on the chair next to me with his head on my thigh.

So, finally, Asher went into the scan at 2:30pm. I had to wake him up and when I laid him on the table he started crying, "I don't want a tube!" I told him he drank enough blue stuff and did great and didn't need a tube....then he was okay....he laid really still on the CT scan table thingy and I had to leave the room since I'm pregnant. It went okay, in the end. And, the transplant coordinator had called the radiology lady that had told me Asher could have a tumor in his intestines and gave her the REAL reason (the same one I told her) of why Asher was getting the CT scan and she then told me, "You shouldn't worry about any tumor." I thought, "I wasn't worried. I just don't think you should tell parents about their child's condition, you're not a doctor." I could tell she liked debate and I wasn't in the mood, so I kept my thoughts to myself.

Sometimes it is all a very frustrating process, and I so can't wait till it is over, as I am sure Asher is.

Monday will be another full day at the hospital, till then we'll have a good weekend.

Day 20 Chemo Round 5

I was really happy with the decision Asher made to stop playing outside when he got tired and go in and take a rest. He napped on the couch for 2 hours I think. Good boy, Asher! You need your rest too!

Day 19 Chemo Round 5

I told Asher yesterday that I would be getting him up at 8am to eat breakfast because he had to go in to get a picture of his brain. So this morning at 7:50am, he was sound asleep, and I woke him up and he crabbed....I told him it was almost 8am and I made him pancakes and he had to come eat. Then he was happy and I carried him down where he gobbled up 2 pancakes. He did well with all the deadlines of eating and drinking today. He only had one meltdown, that only lasted about 1 minute, which was after I reminded him about going to get a picture of his brain. He said he didn't want a picture. Then I talked to him about what he wanted to bring to play with. He said he wanted to pick out 4 toys to bring with him and I helped him get ready to go, loaded him in the SUV, and up drove daddy to take him to his appointment. He fell asleep as soon as Daddy drove off and then I got a call that the anesthesiologist was an hour late so I called Scott on his cell and told him to take his time getting to the hospital and check in an hour late.

Asher is just so special to me, as I see how he has learned to cope with going to these appointments the last 9 months. And, as much as it hurts me to send him off to the appointments and treatments, I sure as heck can handle it okay if he does!

Alexa started complaining her tummy hurt around 5pm (and running a 101 fever) and started throwing up in bed at 10:30pm. Aubree still can't keep a full days worth of food down. So, it has been fun times around here. I just want to feel better, get better, myself, so I can go to these appointments with Asher and feel like I know what is going on. I also want Asher's nose to stop running so I can feel like he's 100% for transplant.

Today was day 1 of tests/scans needed to go to transplant. He had an EKG, MRI, chest xray (front and back, to check his lungs) and spinal tap. Will know the results tomorrow, at least of the MRI. Asher came home from the hospital tonight (at 9:45pm) eating McDonald's and being pretty quiet. He just wanted to watch TV before bed. He said his picture went okay.

Day 18 Chemo Round 5

Asher wanted to make French Toast this morning, so he helped get the ingredients out and he always sprinkles the cinnamon. For lunch he had a turkey and cheese sandwhich. He's doing some of the old things he loved to do at home....one of which is make a huge mess of his toys, and the other, take all the pillows off the couch to make a fort. I know he's feeling better now.

Aubree has been throwing up since 7 am this morning. She has thrown up 4 times (as of 2pm). She can't keep anything down. Now I am beginning to think Asher and Scott did get a bug at the hospital and brought it home because Scott didn't feel well this weekend, same as Asher. So, I guess I'm just waiting for Alexa to get sick now. Not sure how to juggle everybody being sick and get Asher to his appointments. I'm actually coughing and blowing my nose more now than I was 5 days ago. Will have to figure it out I suppose.

2/2/07 - playing in clinic - waiting for room for admit to start round 5



2/4/07 - on the exercise bike


2/5/07 - email hello to mommy (who is at home with the flu)


2/7/07 - foot soak for his stinky feet


2/11/07 - eating cupcakes


2/11/07 - drawing faces on blown up gloves


2/12/07 - framing his face in a box


2/14/07 - blood colored freckles under his eyes (he needs a transfusion)


2/14/07 - Valentine's Day


2-14-07 - dressing change
They introduced a new thing that they've started to use on dressing changed. Bio patch. It releases clorohexidine continuously to keep the bugs off insertion site 24x7 instead of just when they clean.


2-15-07 - pirate


2-17-07 - after 2 weeks in the hospital, Asher got to go home today - it was 83 degrees and sunny and windy outside so we went out to fly a kite and just be out a little bit before it just got too hot (yard looks really dead because we had some bad freezing temps this winter)





2-19-07 - after having a blue sucker


2-19-07 - having Ritz crackers for a snack and feeling happy


2-19-07 - asleep on Daddy's couch in his den

Day 17 Chemo Round 5

It was a pretty good day. Asher was a bit moody, but not too terribly moody. He laughed more today and smiled more today, so that was nice to see. He ate more too....including, macoroni and cheese with hotdogs for breakfast at 8:30am (yes, he gets whatever he asks for as far as food no matter what hour or what meal it is), cheese, ham, french fries, and apple for lunch (that's a meal by Scott), ravioli for dinner and a few snacks in between, including a blue sucker and Ritz crackers. We're thankful for no vomitting and no diahrea today (and that was without zofran). He didn't complain of any pain either (and that was without oxycodone). His nose is still running. It was quite chilly today (compared to Saturday) and it was a financial holiday so Scott was off of work. So, I got outside this morning and got some of the yard work done in the front yard (I wore a hooded sweatshirt the whole time I was out there which tells you how chilly it was). Asher was a bit disappointed he couldn't go outside to play today because it rained all afternoon and night.

I knew this would take a couple of days; Asher has finally crashed and taken a nap! He fell asleep at 5pm, the moment we left the driveway to go for a car ride, and slept till 7:30pm, on Scott's couch in his den. He fought going to bed last night again and was up, I think, past midnight. It was only a matter of time before his body told him he HAD to sleep! Course, now he is still up but I can tell he's ready to go to bed for the night (10:40pm).

I've been reading Paul and his family's caring bridge journal (because he went through Head Start and I wanted to read a bit of what transplant was like for another boy before Asher starts his). I found this at their journal and wanted to post it here. Hope you don't mind, Margo.

---

The Strength of an Egg by Juliet Freitag

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock". Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.

An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an even slightly different angle will break . The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.

That is where parents of children with cancer (or other serious conditions) are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.

Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty though, parents of kids with cancer (or other serious conditions) will pick themselves up and put themselves back together again.

Day 16 Chemo Round 5

Well, it was a rough night. Asher wouldn't go to bed till after midnight. Then, he wouldn't go to bed in his own bed, again, who could blame him. So, he slept with his Daddy. At 3am I woke to hear Asher vomitting, all over the masterbed. You'd think by now Scott and I would prepare and have a bowl nearby, ah well....

Then Asher got up with the girls (way too early for him since he didn't sleep much) at 7am. He was so crabby, soooo crabby. And, when he is like this he screams and hollars at Alexa, argues, doesn't play nice....he's just plain angry. I couldn't figure out what to do so we kinda ignored it and tried to split the kids up a bit between Scott and me today. He ate a little breakfast, but mostly wanted to drink water and milk. Asher had diahrea 2 times in the morning, then threw up in early afternoon, then felt like eating pretty much immediately after. It was like he felt so much better after vomitting. Then Scott gave him Zofran (oral, not IV) and Asher had really really bad diahrea one more time and then wa-la, complete change in his mood. Even with no nap, he was suddenly happy and playing nice with Lexa and everything. He was even able to go outside around 4:30pm and play till 6pm in the yard. Riding his trike and swinging and sliding on the playground set. He then had spaghetti for dinner and played with the girls with the water while they had their bath. Then it was reading books in bed and that was all good. He even read part of one story to us (not "read" but told the story). He's mad about going to bed right now but hopefully he'll fall asleep. He got some Zofran before bed, too, so we're hoping he gets a good night sleep tonight. Oh, and his nose is still running and running. We might have to start giving him something for it. He got the same runny nose in Round 1 and Round 3 and we're not sure why he gets it but it doesn't seem like a "cold." It runs clear, but often, and only when he's sitting up, standing up, or running around, not while he is laying down.

And, to answer Krista's question, technically Round 5 goes for a full 28 days (today is day 16), but he only got chemo till February 5th (Day 3). He isn't getting neupogen shots anymore, so likely his counts will drop again and then go back up on their own as his bone marrow recovers. He could still get a fever, so we will watch him closely for that. We will most likely start to go for appointments to check his counts and begin the tests that need to be done prior to going to transplant. We call it transplant as it is treated much like a bone marrow transplant, but he is receiving his own stem cells that were collected back in August 2006. So, an "Autologous Stem Cell Transplant" is the technical term, but we will call it transplant as that is how the hospital treats it. He will have a brain and spine MRI and as long as the scans are clear (NO TUMOR VISIBLE) he will go to transplant, but we're not sure of the date yet. We are thinking early March.

I like to just hold Asher and tell him I love him and he ALWAYS tells me he is OKAY even though I know he isn't at that given moment.

He got up twice already so far tonight after going to bed at 8:30pm (with no nap) having diahrea in his diaper and crying in pain (pointing to his leg - fault of the neupogen I am sure) and wanting milk and water....also gave him some oxycodone. He doesn't seem to adjust to coming home as well as we could hope, but who could blame him. It is so much quieter here than the hospital and he'd be all alone in his bed if he didn't come snuggle with mom or dad.

I hadn't seen Asher in two weeks. He is SO bald. I kept looking at him because his little white perfect bald head was just so cute. But my eyes kept going to his eyes, and, they are tired, puffy, somewhat red, and almost all of his eyelashes are gone on the top eyelid. I have to admit I felt bad; it is hard to see my big boy like this. I wanted to cuddle with him in the big bed and let him sleep, but he wanted to play, and therefore argue with Alexa. The last two weeks were so peaceful and now he's home, and it is good to have him home, but Scott and I feel like we're constantly breaking up fights. They will play nice for about 10 minutes and then a fight breaks out. Asher slaps his sister too, even in the face. Then she screams and cries. Scott says, "How are we going to do it with four?" I have the same question and I ask it to myself almost every day. I have five more months to ask myself this; maybe I'll come up with an answer sooner than later. I know some of this is normal sibling stuff, but sometimes I worry there's more to it. Maybe some jealousy. Maybe some anger. Maybe frustration and sadness and love. Maybe even pain. I want to treat Asher "normal," but the fact is, he just got done with more chemo and no matter what I want to tell myself, he has some affects from it. I'm cautious not to always treat Asher 'better' than Lexa. I try to be fair. I don't know. I wish I had all the answers, but I don't. Anyway....

Something else....something interesting that Alexa said today...."We rescued Asher from the hospital." She said it three times. I'm not sure where she came up with that.

For dinner Asher ate 3/4 of a cheesey hotdog and about 1 cup of macaroni and cheese, milk, and water.

At bedtime Asher said he wanted mommy. That was nice to hear, especially since Alexa always chooses daddy and I have missed Asher a lot. We're all tired. We'll all go to bed early.

Just got home with Asher. As we passed the school, 1/2 a mile from our house, there were about 50 kites in the air. Asher wants to find his kite now so we'll probably head outside soon. It is super windy and 83 degrees today. The oncologist said it was okay for Asher to play outside in ANY weather for the next 2 weeks. Yeah!

He got his last neupogen shot for round 5 at the hospital before he came home. So, he doesn't have to have anything at home. Daddy said his nose started running at the hospital the morning after he was running around in the halls at the hospital (so yesterday morning) and now it is really bad. He sounds a bit stuffed up, too.

I didn't think it was possible for a 8 month old baby to miss a sibling, but boy was Aubree HAPPY HAPPY to see Asher. She just kept looking at him once we got in the house and giggling and smiling at him.

Asher just laid down on the couch, maybe he'll rest a bit before playing with Lexa.