Posted by Steph in
Chemo Round 5, Chemo Round 6 & Transplant, Counts, Scans, Tests, on Saturday, February 24. 2007 at
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:
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.
Posted by Steph in
Chemo Round 5, Home during Treatment, on Friday, February 23. 2007 at
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!
Posted by Steph in
Chemo Round 5, Chemo Round 6 & Transplant, Scans, Tests, on Thursday, February 22. 2007 at
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.
Posted by Steph in
Chemo Round 5, Family, Home during Treatment, on Tuesday, February 20. 2007 at
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.
Posted by Steph in
Chemo Round 5, Home during Treatment, on Tuesday, February 20. 2007 at
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).
Posted by Steph in
Chemo Round 5, Quotes / Inspiration, on Tuesday, February 20. 2007 at
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.
Posted by Steph in
Chemo Round 5, Home during Treatment, on Monday, February 19. 2007 at
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.
Posted by Steph in
Chemo Round 5, Home during Treatment, on Sunday, February 18. 2007 at
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.
Posted by Steph in
Chemo Round 5, Family, Home during Treatment, on Sunday, February 18. 2007 at
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.
Posted by Steph in
Chemo Round 5, Home during Treatment, on Saturday, February 17. 2007 at
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.
Posted by Scott in
Chemo Round 5, Counts, on Saturday, February 17. 2007 at
Asher's counts continue to climb today. At this point (9:45 am) it appears that we will go home today, but that ultimately depends on the doctor and Asher. Asher has started complaining of stomach pain. So, his mucositis is probably healing it which is where his pain is coming from. (?)
Counts from 02-17-07 04:25
Wanted to add a story about Asher playing with a boy, about his age, in the hallway at the hospital. Last night they were running in the hallways and when the boy was so much faster than Asher, Asher would get so upset. He was considerably slower. If they ran side-by-side, Asher was happy. The boy Asher was playing with had been in the hospital for about 8 weeks and they were roommates for the last 2 weeks. He does not have cancer, though. They put many kids, who have had clean surgeries, or something else I forget what they call it, on that floor because the doctors like those nurses better (they say they are the best nurses in the hospital).
Posted by Scott in
Chemo Round 5, Counts, on Friday, February 16. 2007 at
Okay, Asher is a little bit irritated after waking up, and he looks pale (because he needs blood!), but his body has made good progress with the neupogen shots.
Asher will be getting blood this morning because his hemoglobin is low. We won't premedicate him for that, and Asher is free to go to the playroom and everything today.
The plan today is to have Asher just be watched, try and eat something, and just play so that tomorrow we can make the decision to go home.
Grandma and Grandpa will be spending the majority of the day with Asher today so I can go to work and attend a meeting, so with Asher in the playroom, it'll keep them busy!
late morning - more from Asher's oncologist:
1. He thinks the reason that Asher came up so fast and won't go back down is no Cisplat this time and Asher had 3+ months off and his bone marrow is very strong right now
2. He's getting blood and trying to Eat today.
TPN will stay at 50% tonight. No TPN tonight cuz he ate sufficiently: half banana, grapes, cheese crackers, half hotdog.
3. He has some concern with the spots that Asher is saying he's having pain (stomach / chest). He thinks it's the body recovering from mucositis in the throat or stomach (like we thought he had) and it'll go away in the next couple of days as his white count comes up. He may give us a med to help in the healing. I don't remember what it was called, but we had it during round 1 I think. Fluconozol maybe?
4. He was currently thinking either Saturday or Sunday home depending on how Asher's doing.
5. Continue Neupogen for a couple of more days.
6. He is talking with the transplant team and the clinic nurse to start scheduling tests and anything that needs to be done prior to going to transplant, for instance, MRI of Brain/Spine, Hearing and psychology (?) testing
7. There's no way we can do the MRI while were here right now. They are backed up in anesthesiology due to a few kids who've had strokes and related things.
Posted by Scott in
Chemo Round 5, Counts, Hospital Stay, on Friday, February 16. 2007 at
Asher had an ANC of 140 today. The one oncologist I talked to wasn't expecting him to be showing progress so soon. In fact, two days ago, he said he'd expect Asher to hit ANC 250 next Wednesday. Not sure why he had thought that.
I'm not saying that we're confident that he'll go up tomorrow, but we expect that he'll not go down. At some point, he was even saying that if Asher was above ANC 250, he could go home on Friday. We're a bit sceptical of that since he's getting platelets today and will get blood sometime in the morning. He also hasn't been eating and the doctors want to see good nutrition and probably good fluid intake prior to going home. So, we're probably realistically looking at Saturday assuming that his counts continue to go up and he can stay above 250 and stay healthy without a fever. The doctors lowered his TPN intake to 50% of his daily calories today so that Asher would be more inclined to eat tomorrow. Until his TPN is completely taken off, he will be very unlikely to eat, we know from past experience.
Counts from 02/15/07
wbc 0.4 (4-12)
rbc 2.81 (4-5.3)
hemoglobin 8.7 (11.5-14.5)
platelet 14 (140-450)
Total Cells counted 20
Today, Asher got Platelets. The doctor had wanted us to get platelets when they were between 10-15 and finally, today about 4:40, the platelets started. As I normally had done (or so I thought), Asher was pre-medicated with Tylenol and Benadryl as recommended by the Doctor in order to ensure that Asher didn't get a fever.
Well, the meds worked, but they caused a minor side-effect. Drug induced anger on the part of Asher. For a while after Asher woke up from the Benadryl sleep he was very angry and loud and was not very easy to control. It took him a while to calm down under the watchful eye of the nurses and Grandma and Grandpa. After what you read below, I feel even worse about this happening, because it likely could have been avoided especially because I was at work during this time!
After I arrived back from work, Asher had calmed down and soon showed that he had a bunch of energy. He saw one of the other girl patients running around in the hallway and he wanted to go out there too. With his counts starting to come up a little bit, I figured if he wore a mask he could run around in the hall a little bit now that there were fewer people out there and mostly nurses and other patients roaming the hallway. Asher had a blast running around with his friend! They chased each other in push cars and then ran and ran and ran and ran. Eventually, Asher got extremely tired and just stopped and said "Daddy, I'm done". So back to the room we went, where Asher is happily and sleepily watching some TV and playing with some new books (and getting Rubber Stamp Ink all over his hands!) that he received from my Boss tonight (Thanks Steve & Jill).
Tonight, Steph asked me why we gave Benadryl and Tylenol (because she never premedicates), and I didn't have a good reason. It's just something that I did, based on what a doctor told me early on in the process after Asher got a fever following one of his platelet transfusions (the first one?). Anyway, I decided to do some research on the issue and here's what I came up with after reading the abstracts of a few research reports.
Often, doctors use premedication with acetaminophen (Tylenol) and/or diphenhydramine (Benadryl) for transfusion with blood products in adults and children. This appears to be common practice in most clinics and hospitals without a lot of major research to back the practice. Well, in all of the research reports that I read, "Febrile and allergic transfusion reactions were rare in pediatric patients transfused with irradiated blood products, whether premedication was used or not". So, it appears there's like a 1% chance he'll get a fever, whether or not he gets Tylenol and Benadryl first.
Research Report 1
Research Report 2
The next time we get platelets, we may choose to give Tylenol to control a fever, but I'm pretty sure we won't give Benadryl which will help us avoid the sleep and possible wake-up anger issues.
Sometime over the next 12-18 hours, Asher will get some blood and then we'll await tomorrow's counts to see if his ANC is above 250. We'll see about going home after.
Posted by Scott in
Chemo Round 5, Counts, on Wednesday, February 14. 2007 at
As Steph said, Asher did not get any platelets tonight. From what I understood from talking to the doctor (during which time Asher was being his most upset), the concern is that Asher will become 'Platelet Refractory'
Basically, what this means is that in some people, the more often you get platelets, the less they help and ultimately, you won't get a boost from them at all. this means that you'll have a higher risk of bleeding and won't be able to have platelet donations help.
They're concerned because we have transplant coming up and they want to save the transfusions until Asher absolutely needs them when we're going to need a ton of blood support during transplant and not now when they're just convenient. He may still get some platelets thursday if they are around 10, but he might not need them after all. it all depends on how he's doing, if he gets fever, if he bleeds, etc.
Steph did an amazing job tonight calming down Asher. Sometimes, he sure does need his Mommy.
Posted by Steph in
Chemo Round 5, Hospital Stay, on Wednesday, February 14. 2007 at
Poor Asher was just crying and crying tonight at the hospital and now I'm in tears after hanging up with him 3 times in an hour....good thing I already had the girls in bed by 7:30pm.
During the first call, he was crying so hard but wouldn't talk to me. Then a bit later Scott called me back and said try again and I asked him if he had an owie and he cried, "Yes..." and I said, "Point to where it hurts." And he said, "My tummy hurts." Scott said they already gave Zofran and Morphine. I asked him if he wanted to try crackers and he said yes. But, then the phone rang again (after Scott brought him crackers) and he cried to me, "I don't want crackers. I don't like crackers." So I told him it was OK and he didn't have to eat any. I sang to him (Twinkle Little Star) over the phone and I asked him if he had the bear I brought him yesterday (a bear that Michelle and Erin sent to Asher last fall) and he said he had it and I told him to hug the bear, lay down, and close your eyes....he stopped crying before hanging up, and I hope he's okay. I told him he could call me back if he wanted.
Just breaks my heart and I miss him sooooo much. Sometimes he just needs his mama and this darn flu cough just won't go away....11 days now without seeing my little boy!
Oh, and my worry about his platelets....they are still going down. Scott will probably post what his counts were tonight. BUT, just found out he can't have a transfusion of platelets cuz he's close to transplant they don't want to give him artificial stuff,....platelet transfusions are only platelets that stick around the body for 2 days. So....new stuff to learn as we prepare for transplant....