Posted by Steph in
0 Kindergarten, 2 Years Post-Treatment, Family, Scans, on Monday, March 23. 2009 at
Spring break week went very very fast. We ended it with Asher's sister's 5th birthday today. Tomorrow is back to normal routine again.
Posted by Steph in
0 Kindergarten, 1 Year Post-Treatment, Family, Infection, Quotes / Inspiration, Scans, Thank Yous, on Monday, December 1. 2008 at
Lots to be thankful for, this year, each day. I could write a book on what I am thankful for, but I won't. Not here.
I do want to say I am thankful to the hospital staff for making Asher's Wednesday MRI go soooo smoothly. Very happy with the care they gave him. We, of course, are still waiting the results, and most likely will get them at clinic mid-December.
I'm also thankful for my mom and her wonderful cooking. It was nice to relax and enjoy and I know she was tired, hot and feet hurt from cooking and I appreciate her so much! We all were stuffed from Thanksgiving lunch.
I'm also thankful for my sister and her husband for making the 13 hour drive down to visit us. I could never image the chaos of getting ready to travel with 4 young kids or even actually doing it. I miss them and love seeing her 1-2 times a year.
I'm thankful for my hubby, for sooooo much, but this past weekend, for letting me sleep in two days and for taking care of all the kids, alone, Friday so I could have an adult day at my mom's house.
I'm also thankful for those of you still coming here to check up on my boy, Asher. He's my world, and knowing he's a small part of your world means so much to me!!
Asher is doing well! However, he has started a low grade fever, yesterday, (100), and just could not hear us the last two days. He only complained about a little pain in an ear, but asked which one, he couldn't say. He never needed medicine for the pain or low grade fever. I am sure he has a double ear infection, or at least in one ear, so off to the doctor tomorrow. He still has a runny nose and is coughing, and this just seems on-going, and on-going. He has DIBELS testing, at school, starting tomorrow (Dec 1-3 I think)....so....not sure....but I don't think I'm sending him to school tomorrow until we see the doctor.
We have some Christmas lights up, outside, but not the tree yet.
update 5:30pm....no sooner than I finished posting this did a fever spike....102.7 right now....and his left ear is hurting where he's in tears....so....he got ear drops and motrin....trying to decide if we'll go to a nearby walk-in clinic, which we think closes at 8pm, or wait till 8am to go to the pediatrician's....he fell asleep on the couch
update 4pm Monday....went to the pediatrician this morning and Asher has a double ear infection....starting Cefdinir tonight
Posted by Steph in
Family, Home after Treatment, on Friday, August 31. 2007 at
Posted by Steph in
Clinic Visits, Cord Blood, Counts, Family, Home after Treatment, on Thursday, June 7. 2007 at
wbc 6.3 (4-12)
rbc 3.97 (4-5.3)
hemoglobin 13.0 (11.5-14.5)
platelets 352 (140-450)
neutrophils 48 (25-50)
monocytes 11 (3-15)
Asher's clinic appointment yesterday went just fine.
Asher is going down to 500 fluids a night now, starting Saturday night. They will deliver all 14 bags Friday night. I think this is our LAST home health delivery, but not totally sure about that.
He will still be taking Acyclovir, 2x a day, and Bactrim, 2 days a week, twice on those days.
Asher's appetite is still down from when he initially came home, but he seems to be eating OK. Sometimes he will have a little snack of fruit or something and then say, "No thank you" to dinner (like he did last night!).
Asher's hair isn't growing as fast as I thought it would. In fact, I'm not sure it grew much at all in the last two weeks. It is okay; I like it to be the length it is anyway, especially for the summer.
Asher still needs a 2 hour nap each day. We just can't let him go without it. However, if Daddy is home, forget it, he won't nap. He naps just fine for me though. All 4 of us go to sleep, the 3 kids and me, around 2:30-3pm. Yesterday, on the way to the clinic visit, around 1:30pm, while I was stuck in 2mph traffic due to a bad accident, Asher fell asleep. He had to be woken up when I go to clinic and he wasn't too happy about that. They won't let us come in the morning though because those appointments are for children who are having problems. At least we are almost done going to bi-weekly clinic visits.
Not sure when we'll take Asher to clinic again. Right now we don't have a scheduled date. Two more weeks till his MRI. He will have a large blood draw that day too for lots of blood tests for Day +100, as well as a chest xray to check his organs, also, just a required thing for Day +100. 2 1/2 weeks until his Broviac comes out. Time is flying and we just enjoy each day.
Asher's oncologist just filled out the Cbr paperwork for the DTP program on 6/5 and the transplant coordinator faxed it the morning of 6/6. A guy from Cbr, in charge of new accounts, called me this morning to ask how it was coming and I told him it was just faxed yesterday; he said he will be calling me as soon as he gets it on his desk. I am feeling good about it and think Andrew's cord blood will be an accepted for Asher in the DTP program. Until I have the kit in my hands though, Andrew must stay inside. The "kit" to collect the cord blood is actually sent to me and I have to bring it to labor & delivery when I go into labor. I'm 32 weeks tomorrow. The earliest any of my kids were born was 36 weeks. So, not much time left.
Just some of my reading/research:
"Collection of the cord blood takes place shortly after birth in both vaginal and cesarean (c-section) deliveries. It's done using a specific kit that parents must order ahead of time from their chosen cord-blood bank.
After a vaginal delivery, the umbilical cord is clamped on both sides and cut. In most cases, an experienced obstetrician or nurse collects the cord blood before the placenta is delivered. One side of the umbilical cord is unclamped, and a small tube is passed into the umbilical vein to collect the blood. After blood has been collected from the cord, needles are placed on the side of the surface of the placenta that was connected to the fetus to collect more blood and cells from the large blood vessels that fed the fetus."
"Clamping the umbilical cord too soon after birth may increase the amount of collected blood, but it could cause the baby to have a lower blood volume and possible anemia soon after birth."
"Cord blood may only be collected during the first 15 minutes following the birth, and should be processed by the laboratory within 48 hours."
Posted by Steph in
Clinic Visits, Cord Blood, Counts, Family, Feelings, Home after Treatment, on Thursday, May 24. 2007 at
Asher went to clinic yesterday. He weighed 17.3kg, up from 17.0kg which was pretty consistent through April.
We are going to go with 750mL of fluids at night now, over 10-12 hours, down from 1000 bags (although we were stopping them early, he was probably still getting around 850mL). Then in about 2 weeks we'll go down to 500.
We are dropping the Prevacid since it is for tummy issues and I don't think Asher has any. Acyclovir goes for 6 months though, so got some time on that one yet. Still doing Bactrim Tuesdays and Wednesdays, and I think that is till Day +100 but I forgot to ask on that one.
I am going to call and schedule surgery for Asher to have his Broviac out for the week following his next MRI (6/21), so week of June 25th. They won't let me do it the same day as his MRI because they (not me) fear the MRI could show recurrence.... Just want to get that done before July hits as we're thinking Andrew could be born anytime in July. Also, sooner the better, to let Asher get back to his life, swimming included. He deserves to enjoy our pool this summer. He has always loved to swim since he was a baby. Today the pool is done (the reconstruction) and is being filled with water as I type this. He was so excited this morning and before the girls were awake he and I walked around the pool. He keeps talking about getting his catheter out so he can go in the pool. I told him it will be around the time Andrew is born that he will get to jump in the water! I think I will have tears then....it is like he has his '4-year-old life' back but then he has these tubes hanging out of him....I can't wait till they are out and not a constant reminder of this past year.
He is doing well. His fingernails are all healing and growing more normal now. His jumping is improving, as is his running. He may even need a haircut in a few weeks!
Counts 11:30am 5/23/07 Day +71:
wbc 4.3 (4-12)
rbc 3.69 (4-5.3)
hemoglobin 12.5 (11.5-14.5)
platelets 309 (140-450)
neutrophils 46 (25-50)
monocytes 13 (3-15)
ANC 1978 (doc says this fluctuates a lot at this point, so it dropped, but not to worry)
Next clinic appointment is June 6th.
Before clinic I had the kids at the pediatrician for the girls' well-checkups (3 years for Alexa and 1 year for Aubree). It was one year ago this week that we had Asher looked at by this pediatrician and I think she knew what the MRI would show before she even told us she was going to order an MRI. I think back, about how she handled that, and didn't freak us out....and how she called and checked on us a lot after we did know the results....
She was observing Asher quite a lot yesterday. I noticed her doing that and I said I was so amazed how Asher had come out of this past year with very little to no deficits. She said she is amazed at how well his mind is working (she used a different term, like brain-something), how balanced and coordinated he was, how much he had grown, and how good he looked. She said she couldn't believe it had been a year already but that she was sure it had just been an awful year and couldn't imagine really what it all had been like for us....there was hesitation in her speaking, and I could feel her thinking back to that week last year....she even said she remembered how he was last year and he is so different now.
I was really happy with how careful the kids' pediatrician is too. No one warned me or told me that the girls' vaccines need to be post-poned or anything like that. For instance, Alexa couldn't get her chicken pox vaccine because it is a live virus vaccine (if I said that right) and Asher could get quite sick, so she will get it at 4 years or 5 years old since it is a 3-5 years vaccine.
Every day this week it has been nothing but THERE....the memories, the pain....if I'm not playing with Asher or near him I feel the pain. When I'm with him I can celebrate his victory. I'm always rubbing his head...it is WEIRD to MISS his baldness. I kinda do. The bald head...there was something about it. It wasn't a sign of his illness or anything like what missing eyelashes meant to me....
So anyway....a flood of memories this week, of feelings, and of prayer. I found myself praying to God last night after thinking about what the transplant doctor said...."if Asher has a recurrence we will do radiation"...I know...I know...that has always hung over me. I'm so afraid of radiation and I ask God to what? NEVER let Asher's cancer come back? SURE! But really, I'm the realistic person here, and I just ask that IF it comes back, to keep it away till we can do radiation at an older age. I'm just so afraid of it.
There, got that outta me. We can just go on with life and act like there is NO CANCER in our life! So there, Cancer, go away! Let us have some peace and enjoy the upcoming new life in our family! I want to give birth to a baby and not feel like my world is going to fall apart.
I saw a little boy at clinic today with his mom. I almost didn't recognize him. He had leukemia, at 2, and he looks so big now. Last we saw him was at the end of September when he was DONE with treatment but got a line infection (in his catheter). She remembered how sick Asher was back then. Anyway, it is good to see the kids post-treatment. There's something about it. Hope. Faith. Something. He's the same adorable boy I remember, just taller, and with hair! The mom said to me, "OH! You're expecting!" Yeah, you can't miss it now. I have a good size 7 month belly. She said, "What, you thought you didn't get to enjoy the last one so you'll have another one?" I said, "I guess that is what God was thinking!"
And....before I forget....I talked to the transplant doctor about Andrew's cord blood....it was a GOOD conversation, one where I didn't feel horrible after having it. I had done a bunch of reading and anyway, it was just GOOD to have the doctor be honest with me and not just say, "Of course you should bank it!" She actually didn't even say that, and I told her it surprised me! Both my OB and the kids' pediatrician said that, "Yes, you should bank it!" I'm still trying to decide what is 'right' and hoping God gives me a sign, and soon. Some programs require registration by 35 weeks and I'm 30 weeks tomorrow.
Posted by Steph in
Family, on Thursday, May 10. 2007 at
Anyway, the last two days Asher and her have started to act out / play doctor. They pretend they have a broken foot and wrap it in a blanket and then hobble around the house and say, "I gotta go to the hospital." They also lay on the couch, one of them does, acts like a patient and the other acts like the doctor. Alexa was just doing this and she says, "now lets do something to your catheter," "fluids," "clamp it," "you're free now," "you're funny at the doctor," "now we have to do something to your tummy again," "now we have to do something to your back," .... then they switch roles. Again, I am amazed at how much she has picked up, especially since she hasn't seen all that many examinations by doctors that Asher has had (although she saw yesterday's).
Posted by Steph in
Family, Feelings, on Wednesday, May 9. 2007 at
On another family note, Asher is just so excited about the photo of his baby brother that I got taken (via 3D ultrasound) this past Saturday (5/5). Asher just loves babies. I'll never forget all the times that bringing Aubree to the hospital during Asher's first three chemo rounds brought joy to Asher. Lately, Aubree really reacts to Asher. In play, she will even lean back and lay on him and Asher will look down at her and say, "Oh, Aubree, I love you." Back to the other baby of the family...Asher talks to Andrew (his baby brother) a lot and even kisses him (my belly I mean) before he goes to sleep at night. Asher is also the only other person to feel Andrew kick, besides me. He loves to feel him. He says, "Andrew is growing bigger and bigger," and "Andrew is kicking. Boom boom." I often think about how Scott and I are a bit stressed out about having another baby, if only for the reason that four kids under five is A LOT of work, but Asher puts everything into perspective...LOVE.
I think I forgot Mother's Day is coming up. I heard on the news tonight, "It will be hot for mother's day." I had to look it up on the Internet. Yup, that's this weekend. And yup, it will reach around 105 degrees (and yup, my pool is STILL under reconstruction). It is one of those times in my life that makes me stop and look at myself and really ask myself, "Am I the best mom I can be?" Lately I struggle. I know I am a far better mother than daughter, wife, sister, or friend right now. I still just don't have it all together and I'm scared I won't be good enough for Andrew. I wonder if this is normal, to question like this. I still remind myself that God sent Andrew for a reason. Heck, He even warned me in a dream. I don't think I mentioned that in this blog before, but after Aubree was born, and after Asher was diagnosed with cancer, I had a dream that I would have another baby. He was named Andrew in my dream, thus the reason he is named Andrew now. Anyway, long story....after this dream I cried a few times while thinking about it....I told Scott (and God), NO, I didn't want to bring another baby into the family. Scared what effects Asher's cancer would have on another sibling, I really believed I would not have another baby....and like I said, long story. Won't share it all here. I believe I get messages in dreams like this and when they come true sometimes I think it is freaky, although, I am grateful for them. I was 'warned' prior to my first miscarriage. It comforted me then, and with Andrew, I don't think I would have coped with getting pregnant so soon when I didn't 'feel' ready if it weren't for that dream.
Back to being a mother....
I was reading a book to the kids prior to nap. Aubree lost interest first, so got put into her crib. Alexa kept talking while I was reading, so she got put into her (new) daybed. Asher was totally into listening. I kept reading (it was a THICK book) and he suddenly said, "I love you, Mom." Asher will say this, probably one time a day, if I am doing something with him that he likes. Alexa, too, but she says, "I like you Mom."
It reminds me of a cute story, in which I don't know all of it, but my sister, Tracy, when we were kids, starting making/giving me cards for birthdays or whatever and she started signing them, "Like, Tracy," instead of the 'normal' "Love, Tracy."
I know I'm tired. I know I feel like I am failing in so many parts of my life. That's hard. Keeping up with what I think I should do, but feeling like I just can't do it. I'm rambling....off to get the kids baths and reading and into bed....
Posted by Steph in
Family, Feelings, Home after Treatment, on Tuesday, April 17. 2007 at
I have settled into the schedule, getting up at around 6am and making sure to shower before the kids wake up, running down and starting a load of laundry if needed, then the kids are up and it is non-stop breakfast, diapering, dressing, disconnecting/flushing Asher's catheter until around 9am, and then they run off and play and chores or catch up on computer stuff starts....soon it seems I'm cooking again....3 kids, someone is almost always hungry, or tired, or wanting something. The afternoon drags a little, as I get pretty tired, my baby boy kicking me and some braxton hicks contractions thrown in the mix (can't believe they started this early)....yeah....I'm tired from 2pm till Scott gets home. I drag around the house doing what I need to do. When it is nice outside the kids and I sit outside or play outside, in front, waiting for Scott to get home. Usually when Scott gets home I can't wait to go to bed, but usually wait till at least 9pm so I can sleep well the entire night. I truly am a morning person. I'd have more energy longer if I wasn't pregnant and I look forward to the day I can run and play all day like the kids LOL. Soon the AZ heat will kick in, till then, we are truly enjoying this nice cool breezy weather.
I can't wait to try out the pool, but after 18 months we are still working to get one that doesn't end up stained 2 days after it is filled with water. Today they jackhammered the pebble sheen and tile and in-floor cleaning heads out....what a HUGE concrete dust mess now outside, all over my patio, belongings, windows, house....yuck, they didn't put plastic up or anything and when they were done they used an air hose and blew the dust towards the house. Asher can't go out there now till we get that mess cleaned up. I guess it should only be 7-10 days till the pool is done and filled with water again. I can't wait to use the pool, but I feel so bad Asher can't go in with the rest of us. When he can't do something (like eat before an MRI or swim because he has a central line (broviac right now)), I must go without too. That is how I have always been. It wouldn't even occur to me to feed myself when he can't eat....but swim? I'm not sure. It was interesting, right after he came home from transplant hospital stay, Asher said, "I can't go swimming. Just mommy and Lexa can." He seemed totally fine when he said it too. I wonder what will happen when everyone suits up to go in. I guess he knows he can just get his legs wet. Till then, he's enjoying watching the men "fix" his pool, from inside the house, looking out the window(s).
It is nice that spring is truly here too, because our grass is green again and (most of) our trees. We lost LOTS of trees from the horrible frost over the winter, but thankfully we planted a lot and do have some green ones left. It is actually nice to have yard work to do again. I LOVE yard work (I really don't care for house work). It is just so nice to go out and be in the yard and sit quietly or watch the kids run or kick a ball with the kids in the grass.
Just normal stuff.
I went to get my haircut this weekend. I hadn't gotten it cut since February 3, the morning before my flu hit. Longest I had gone without getting it cut. It was busy there Sunday morning, but there were lots of stylists for all the customers. I was watching a family. A dad, a mom, a boy (about Asher's age) and his younger brother. I was noticing how much hair both boys had, and how blonde it was. I was noticing how cute they were. I smiled watching them play, the older boy hugging his brother and trying to keep him from running off and being naughty. Then I felt a little sad....but I continued to watch them, especially when a stylist started to buzz cut the youngest boy's hair. I can't wait to give Asher a haircut again....
It is when I am not with Asher that I feel the pain of the past (almost) 11 months. What he went through. What I fear. What I remember. What I hope for. What I wish never happened. I find I don't want to be out, alone. After my haircut I went to check on car seats at a store and then I went right back home. I didn't buy a thing. I had hours to just do whatever I wanted, and I didn't want to be anywhere but home. I don't have to think about cancer or memories or my fears when I'm at home. I'm too busy to do that there....
I do truly feel like Asher isn't sick anymore. I know, because he still doesn't have any hair (no eyebrows or eyelashes either) that if we go out, people do stare at him. It is then that I am reminded of his cancer, the effects of chemo, the heartache I have felt and carried for almost 11 months now. I can't imagine how much more of that I would feel if I actually went out with the kids and took them into the grocery store or other stores, but I don't do that. The shopping is left to Scott right now. He stops on his way home from work. The only time we have been out recently was to go van shopping. It was finally time - 4 car seats for 4 kids under 5, our family vehicle, bought just 4 years ago, just doesn't work for that scenerio anymore, and I am tired of not having a trunk. Asher had his mask on because it was windy outside. Everyone stared at him. The sales men that helped us didn't make it noticeable, but other customers made it very noticeable. I did have to tell Asher that he couldn't play in the toy area of the car dealership Saturday, that was hard. In fact, then I had to leave with the kids because it got to be too much, but otherwise, my boy is just Asher, and no, he isn't sick, he doesn't have cancer, he is just waiting for his hair to grow back....and I'm waiting to feel completely normal again. It might be awhile.
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Family, Hospital Stay, Infection, on Thursday, March 22. 2007 at
Day 9 post stem cell infusion
I used to just think the difference between night nurses was how quiet some were and how loud others were. Now I know the real difference are the ones that just hang and run meds and the ones that care.
Asher got a nurse tonight that has never taken care of Asher. There aren't too many nurses left here at PCH 2nd floor in that situation, but we got one tonight. That fact doesn't bother me, but I found it odd she never asked anything about Asher or what she could do for him tonight or anything prior to him going to sleep.
This nurse doesn't check one diaper. Curious why she wasn't warned that he had C.diff and fills a diaper every 1-2 hours. She hangs her med and leaves. She has no intention of checking Asher or his diaper at that time either because she comes in without a yellow gown and gloves on. So, already two times tonight I watched her come in, start a med, and leave. I get up, Asher's diaper is so full it has overflowed to the chuck (pad on his bed) so I change his diaper and the chuck. The third time two pumps were beeping for 10 minutes before I got up, shut them off, and then changed another diaper. Seconds later she came in, "Sorry I let them beep." Then she said, "The last stool had blood in it." Yeah, I know...I changed his diaper....oh well....
In situations like this, I prefer to just stay up all night and take care of Asher because I want someone who isn't afraid to change a diaper or afraid to touch his head to see if a fever is starting....so that's me tonight.
And, the moral of the story....I am really amazed and thankful for the night nurses that are willing to stand by a kid and take care of them when a mother or father is tired and needs some sleep at night! Asher and I have been quite blessed with a few wonderful night nurses the past 9 days, one in particular....she had Asher 3 nights last week and 3 nights this week. Whenever I would wake up, she was always there with Asher. She stayed by him during vomitting, she changed all his diapers at night, she mixed a special cream-powder for his butt to protect it from all the diahrea, she carefully lifted him to weigh him at 6am, he even took Tylenol from her so I could sleep, and she bought him a special Elmo twirly flashing light toy and gave it to him the other night. She's great and she's making such a huge difference! Hope she's back next week so I can tell her just that.
The good news, for tonight, is his temp has been 36.8-37 since 9pm! Yeah Asher!
PTT Time 14.3
Thrombin Time 15.3
weight 17.6kg I think at 5:30am this morning - the transplant staff said this is okay, but hey, his diapers are barely fitting and we're talking about 3 1/2 lbs extra on him right now
They are stopping the anti-fungal medicine and the neupogen with his ANC over 10,000. They got the bacteria sensitivities back; the bacteria in his blood (Enterococci) is resistant to Vancomycin so he is getting a different one as of this morning (Linezolid) and he has to get it for 10 days so his hospital stay is for sure another 10 days. They will slowly take other things away too, the morphine, the TPN, etc. He hasn't had a fever since 4pm yesterday. He hasn't thrown up since morning yesterday, I think. His stools are still pretty big/heavy, and he's averaging 8 a day they said (sure seems like more than that to me, but every now and again he will have a urine only diaper).
Asher's skin started peeling yesterday from the Thiotepa chemo skin burns/Paliferim skin rashes. His head and elbow were the first things and now I see his armpits are next. His elbow was really bothering him and he kept rubbing off the dead skin onto his pillow last night.
Asher is up and looking really good. Not as tired anymore and more himself! He's on the couch playing game boy now (I had gone to the shower and he said he wanted to sleep there but I put game boy in his lap just in case and sure enough, when I got back he was playing Curious George). He said to me, "I like you sitting by me." He's too cute.
Asher has started getting nosebleeds. They aren't too severe yet. They started as pink tinged mucus that he just blew out but this morning the other nostril has blood that just runs. So, we'll keep an eye on it today.
So, I asked Asher if he wanted to call his sister to say happy birthday. Asher said, "No. It's my birthday. Cuz I need it more. It's not Lexa's birthday yet. Cuz it's mine." Earlier this morning he said, "I don't know how to make a cake." That came from our conversation on stem cell collection day (when he thought as soon as he got his stem cells he could go home....he was quite upset when I said it would be a few weeks yet) when I told Asher when he was bigger and stronger we'd go home and celebrate Alexa's birthday, make her a cake, and celebrate Easter too, and look for Easter Eggs. So, he remembered that. Anyway, Happy 3rd Birthday, Alexa Belle! Mommy and Asher will celebrate with you soon!
So Asher was up from about 9am-1:30pm. He sat on the couch with me the entire time and after a shower and dressing change he napped till around 3:30pm. I tried to sneak a little one in there too.
Asher's eyelashes and eyebrows are about gone now, with some just hanging on. I notice his left eyelid isn't opening all the way.
At a "typical lunch time" hour Asher asked for pizza! I was thrilled. He is asking for food. I didn't expect this meant he would eat anything, but I ordered it anyway. While waiting for it (it takes about 45 minutes to get it from room service) he said he wanted mushrooms on it. I tried to tell him the hospital didn't have mushroom pizzas but when we get outta here I'll be sure to get one from Pizza Hut for him. He cried (he is a bit emotional/moody/irritable today, like yesterday, although better today). Anyway, I had ordered cantelope and pizza and potato chips and a chocolate chip cookie. He took a bite of cantelope. He held it in his mouth for a bit and then started to chew it and then whined. He wanted to spit it out. I expected this. But, I'm thrilled that he put it in his mouth! He didn't drink anything today at all. I think I forgot to metion the last two days he had drank a bunch of water, although usually threw it up after.
Asher looks to be back to his almost old self already, schedule wise. Although, he is napping again now, but will probably wake up when Scott gets here.
I talked to the transplant NP around 4:30, during and after she played with Asher and his frog and lizard. She said he is looking great (although she just noticed his runny nose and is talking about swabbing him now, although, she wants to wait to see what his platelets are at because of his nose bleed). She said if Asher is only on the one drug for the Enterococcus, he could go home on it, but it will still probably take about seven days to get him ready to go home. So I told her I want the calories on the TPN cut back. They wouldn't want to cut back on the electrolytes, which makes sense, but in the past we have learned that Asher just won't eat if he is getting TPN or NG tube feedings. So, at least I threw it out there now. Also, Asher's morphine will go to 0.1 continuous tomorrow and we'll see how he does with that. I think he will do okay. We really only push the button when I shower him now because of the bone/skin pain. Oh, I also talked to the NP about cutting back on the antinausea meds, starting with the Ativan, going back to 0.5 if he is still at 1.0 (and she said 0.25 if he is at 0.5 now but I don't think he was yet). I also told her I want the hydroxyzin stopped. She mentioned if he remains fever free (forgot for how long) she will remove one of the other antibiotics too.
In any case, we're on the road to bringing our boy home. It's been an emotional week. When it gets too quiet in this room, with Asher napping, I am brought to tears at just the thought of one part of how this past week was for him, for me, how the past 10 months has been for him. I am sure the pregnancy hormones don't help my emotions right now, but I have decided it is time for a break. After crying several times last night, trying to get some sleep, trying to make sure Asher stayed dry with his diapers, I just need a 3-day weekend. I need to see the girls and just get some fresh air. Hopefully the house isn't too torn apart from the warranty repairs that have reeked havoc there this week. Scott will be here soon and I'll head home. Be back Monday morning or Sunday night I guess.
Oh, and I forgot....
Last night Asher asked to pick from the "prize box" after his dressing change. He just brought it up out of the blue. He used to have only one dressing change a week and get a toy from a prize box while he was in the hospital, but in transplant he gets one every day and has never been offered a "prize." But, the nurse held up the toys outside the window to his room and when Asher picked, she washed them down and brought them to him. So today Asher wanted another prize. However, it isn't safe for Asher to get those toys yet. So, the child life specialist came in with a piggy bank with Asher's name painted on it and she said Asher would get a ticket for each dressing change. I talked to Asher and we agreed after five tickets we will call the child life gal and he will get to pick a prize worth five tickets. At first the said, "No, I get five tickets," he meant for today's dressing change. I reminded him he gets one ticket each dressing change and after he has five (so Monday) he will get to pick a special prize (one that is set aside for transplant kids - mainly that it is brand new).
Posted by Steph in
Chemo Round 6 & Transplant, Counts, Family, on Thursday, March 15. 2007 at
Day 2 post stem cell infusion
I don't have a printout of the counts again, but here is what I was told:
hemoglobin 11.x (good boost from the blood infusion yesterday)
When his platelets get to 20 or under he will get some....so either tomorrow or Saturday. They expect him to need blood maybe every 5 days or so and not sure on platelets yet. He hasn't gotten many platelet transfusions in the past so he might accept and keep transfustions inside longer.
I woke Asher today around 8:30am after I heard him explode into his diaper. Maybe the morphine will help stop the diahrea which he has from other drugs. He is in a fairly good mood and we have only pushed the PCA button two times. He got his nupogen shot like a champ. He gets his last dose of paliferim today. His weight is back up after two nights of TPN at 16.3 at 6:30am. His TPN will be at about 100% calories tonight.
Asher's skin is still warm but the redness (from the Paliferim) from last night is gone. Only thing is still the discoloration/redness/dryness from the thiotepa chemo, and his elbows are the worst.
PT was here and he refused to get out of bed, again. Can't blame him.
Not much else going on today. It is amazing how cooped up a private transplant hospital room can feel....it is kinda depressing here, at least that is how I feel. Just staying busy with different games with Asher and working on my Digital Paper Tearing when Asher is sleeping. Can't believe 1/2 of March is over! We're almost there!
Thanks everyone for checking on Asher like you do!
Asher hasn't requested any food today and when asked (about food or drink) he says no. When I went for lunch I got a salad from the cafeteria and a cookie and Asher said, "Oh! A cookie! I like cookies!" So I gave him a piece and he took a little nibble and that was it, held it and then gave it back to me. So, I'll just let him ask when he's up for it.
Asher's shower went okay (cept he cried before and during it - I think his skin really hurts him) and so did his dressing change. His skin is looking better and his skin tear looks OK, it won't fully heal till his counts go back up. But I really like this non-tape dressing. The nurse just wraps gauze around his chest and then uses the stretchy stuff (like they used to use on his head) to hold it in place and it is working just fine, thankfully. This will allow his skin to not get worse as his counts start to recover.
Not much nausea today; just gagged on one of the 9am mouth cares.
All of Asher's long (old) eyelashes are gone now and new ones have already started to grow in.
He has pushed his PCA button three times from 10am-1pm. The button dose is 0.3 so not huge. Glad he is remaining comfortable.
Some of his skin redness is actually still there (or back) (on his right arm, his back, etc. anywhere where he seems to have a pressure point now, weird) and the transplant doc was just in here and said she can't know for sure what it is from but the Paliferim does cause skin rashes and as long as Asher isn't itching it, they aren't worried at this point. Asher's last dose of the Paliferim was 15 minutes ago.
He's watching a TV movie now and about to have his nap.
I have taught Asher how to turn the TV on and off with the remote. Last night around 11pm he FINALLY gave in and turned off the TV and said to me, "Mom, go to sleep, I want you to go to sleep now!" It was funny. It was right when his night nurse came in to listen to Asher and stuff (I still don't understand why she did it at 11pm when usually they do it around 8pm-8:30pm). Anyway, so today he turned off the TV when he was finally ready to nap, and that was around 4pm.
He's still sleeping, even though we just got him up to weigh him. He said to me, "What are you doing?" I said, "Getting your weight." He said, "Hey, what happened to the TV?" I told him his show ended and it shut off. He said, "Hey, what happened to my train?" I said, "It's right here" (by his pillow). Then I tucked him back in and told him he could play after he wakes up and I had to go to the bathroom. He said, "Okay," and when I got back he was asleep again.
I forgot to tell this little story earlier.... After one of the nurses was here checking on Asher (around 11am) she used the little tool with a flashlight on it to look in his mouth. So then I told Asher to look in his lizard's mouth (he has this rubbery lizard (and frog) that he is VERY fond of right now). So he did. Then, when the transplant doctor came in around 2pm he told her that he looked in his lizard's mouth. She asked him, "What did you see?" He answered, "Sores." She asked him, "How can you make his sores better?" He didn't answer and she then asked if he had given his lizard mouthcare and he said no. She then told him to keep up his mouth care so his mouth would feel better.
The transplant NP came in this evening and talked to me a little while Asher slept. At one point she said to me, "What are you going to do with your girls when you have to bring Asher to clinic and it is still RSV season?" I said I hadn't thought that far ahead, that I worry about one week at a time most of the time. She then apologized for bringing it up. Truly, I do not really think about April yet. Heck, Alexa's 3rd birthday is one week away and I know we're not celebrating till Asher gets home but I still think about it. When I have no control over certain things, why think so far ahead. I have gotten woken up so much here at night that I am now really feeling the depths of sleep deprivation....I get sad and irritable when I am tired. It becomes hard to think or focus. So, one day at a time is good enough for now. April will be there when it comes.
It is so weird to be cooped up in here and hear it is 91 degrees outside and be missing it (not all bad since I'm 20 weeks pregnant and hot enough inside). I wonder if Asher's flowers are still living through the heat and afternoon sun. We're starting to really miss the girls. That reminds me, the other day Asher looked at the two photos on the dresser here in the hospital room (Asher is holding Aubree and Alexa is holding Aubree) and he said, "I love my sisters." Deep down I think he misses them way more than I even do, so that must be a whole lot!
Oh, and before his shower around 1:30pm today, Asher and I were playing SIMS2-Pets on my laptop and we made our family. Asher really enjoyed this. We forgot to add our 2 cats though before saving.
Like clockwork, about 6 hours after the Paliferim, Asher is all bright red again. I looked in Asher's mouth tonight and his tongue is all white on top....mucositis really setting in.
Asher played with his trains a little on the floor mat tonight, and a little more Sims2. Now a movie on TV....then sleep.
Posted by Steph in
Chemo Round 6 & Transplant, Family, Home during Treatment, on Saturday, March 3. 2007 at
Asher didn't want to go to my ultrasound this morning; he wanted to visit Grandma Val since he hadn't seen in her weeks. So I dropped him and the girls while I went to my ultrasound. After only being there two hours, I got back to pick him up and he was not happy. He looked at me kinda mad and said, "I don't want to go home." But he came home in a good mood. When we got home I told him he is having a baby brother, that our baby is a boy. I showed him the pictures. I told him he has two sisters and now also one brother. He was actually pretty happy and repeated what I said, holding up his fingers, 2 for 2 sisters and 1 for one baby brother. Then he hugged me (my belly I mean). I'm thrilled for him. I thought it would be awesome for him to experience having a brother.
He is napping right now. I just gave him his third and last dose of Palifermin. Several people have said it is a MIRACLE drug, including the home nurse that came yesterday. I'm glad there is such a thing, less GI sores means a lot for his healing.
I think Asher might go visit with his Grandma Val for several hours tomorrow while Scott and I get a little time to ourselves. Hate the thought of catching any illness at a movie or something, so we'll see what we want to do. It was our 7th anniversary (on 2/29, which we got to skip this year LOL as busy as we are its a good thing we only "celebrate" every 4 years LOL). Then when Asher comes home we'll have him pack I think. Then just normal Saturday stuff. Then Sunday, late morning, I think we'll go to the zoo. Have to think about it. The weather will be the warmest that day for morning zoo trip. We live way on the west side, so not close to the Phoenix Zoo, but there is a smaller zoo on our side of town that we can go to. So, have to see.
Closer we get to starting the transplant, the less I sleep at night. I don't like to dream, so I think I don't like to sleep.
Posted by Steph in
Chemo Round 6 & Transplant, Family, Tests, on Wednesday, February 28. 2007 at
Sounds like Asher will not be allowed to go to transplant with his current snotty nose / cold situation, which makes sense, but we'll know more tomorrow. They are going to swab him tomorrow - guess they swab all kids before they go to transplant - he'll hate that. If we're delayed, most likely 7 days, so admit 3/11 instead of 3/4.
Alexa got Asher's cold Sunday night and hasn't been eating much at all and has a hard time breathing. Aubree is still having really crappy diapers and teething and being fussy about bottles (whether they are formula or orange (artificial fruit) pedialite) and food. BRAT (bananas rice applesauce and toast) diet is great if your child eats that stuff, Aubree isn't wanting to. I was pretty worried about her today and if tomorrow isn't better she's off to a doctor....such a bad time for our family to be sick
I guess the delay would give me an extra 6 days to fill out all the neurodevelopment forms/paperwork/questions. Just surprises me I got this so late and got so little time to do any of it.
Posted by Steph in
Chemo Round 6 & Transplant, Family, Feelings, on Tuesday, February 27. 2007 at
I've decided I'm not scared. I think I'm numb. I know I am tired. I am so thankful Asher's last two rounds of chemo were EASY because I wonder what I'd be feeling if it had been different.
I'm noticing I am questioning a little bit again....is transplant the right thing, the right time....did we do all we could now to cure Asher's brain cancer now....did they take good care of his stem cells and will they thaw okay....
Yeah, I'm asking things I can't answer.
And, I'm tired.
So, if that is all my brain is coming up with, we're good.
And, I'm actually starting to look forward to knowing if our new baby is a boy or girl (hopefully we find out in 4 days) and I'm looking forward to feeling the baby move so I can stop wondering if the baby is okay. I'm looking forward to allowing myself to enjoy life again with less fear. I'm looking forward to moving out of the treatment phase and onto the "oh, please God, don't let the tumor come back" phase. I'm really looking forward to this summer.
Posted by Steph in
Family, on Saturday, February 24. 2007 at
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.