Posted by Steph in
3 Years Post-Treatment, Clinic Visits, Counts, on Saturday, February 13. 2010 at
RBC=4.45 (norm 4.3-6)
Segmented neutrophils=34 (40-85)
Protein, total=7.1 (6-8)
Bilirubin, total=0.3 (0.2-1.3)
BUN/CREAT ratio=25.9 (10-28)
Posted by Steph in
2 Years Post-Treatment, Clinic Visits, Counts, Feelings, Scans, on Thursday, March 26. 2009 at
All clear, but still, I feel like I have been punched in the gut. In a good way....I guess....maybe....sounds weird I suppose.
Asher fell asleep only 10 minutes away from the hospital today, at 3:15pm. He was exhausted. When I woke him, though, he was in a descent mood. On the way out of the elevator at the parking garage, before clinic, Asher said, "Mom, I'm dizzy. I want another MRI today." I kind of wondered if he knew what he was talking about. Like if he knew WHY he gets MRIs. I've had a difficult time explaining to him, in the past. I've never really wanted to explain everything to him, because I didn't want to scare him. He knows little. He remembers little. He seems to not have questions. I've told him he has MRIs to make sure there are no more tumors, bad spots, in his head to give him headaches. Anyway, I actually think he might have felt a little dizzy because he was very nervous about clinic.
Dr. Etzl actually met with us today, instead of his partner. Been awhile since Dr. Etzl has seen Asher. Although Asher knows him and he has a wonderful way with Asher, Asher still refused to talk to him or barely look at him. He wouldn't walk for him, or jump for him, or squeeze his fingers, or push on his hands with his feet, or anything. He was terrified. Nervous. Dr. Etzl even said to Asher, while he was about to listen to his heart and lungs, "Are you as nervous as you look?" He was. He was rigid, looking down. I feel so bad when I see Asher feel the way he feels when he goes to clinic. Everyone is so nice to him. He never gets poked. He never gets bad news. But, it is like what he went through, 2-3 years ago, changed him forever....
When school started, a kid at school asked him about his scar and he said, "The doctors did something naughty to my head." Well, every clinic appointment, I tell him, "These doctors didn't cause your tumor or your head owie. They fixed it. They made you healthy. I am so grateful to them. I would be grateful to you if you would answer their silly questions." I told him this today, as well. I was hopeful, but it didn't change the way he was at clinic today.
Dr. Etzl showed me all the blood test results....everything normal, including kidney function, liver function, bone marrow function, and thyroid function. I don't have a copy, otherwise I would put the results here. I am going to try to get a copy, as I forgot.
Dr. Etzl reminded me what Asher's treatment goal was. To cure him, rid the body of Medulloblastoma, without radiation. He told me that there is still no evidence (proof?) that the treatment Asher had cures Medulloblastoma. He said, "Even when radiation is done right at the cerebellum, AND whole brain radiation, there is still only a 75% cure rate."
I'm not a numbers person. I never have been. I've seen this thing called Medulloblastoma blast into the lives of many kids, and it treats each one differently. Statistics? Why do they matter?
I guess I'm a scientist, to a degree. I was a engineer, a problem solver. I get why there are clinical trials, and statistics. There's a need to know what the BEST treatment is. What the BEST outcome can be, as far as living life. As far as the many children they must cure of this nasty beast. That's why we gave Asher that poison, because we wanted our child to have the best chance of beating cancer. The scar on the back of his head is a constant reminder, to me, every morning, as I brush Asher's hair while he eats his breakfast (helping it to dry faster).
But, sometimes I feel Dr. Etzl is waiting, and warning. Waiting for the cancer to come back, and warning me it will.
Or, he is simply telling me something I already know....Asher is doing so well, beyond their expectations, and I should feel blessed. (And, I do. How do I even put it into words how I feel about Asher's state of health right now?)
I've always respected the straightforward, honest, direct surgeons and doctors. I'm straightforward, honest, and direct. So, I need that in return. Especially as an engineer.
In case I haven't said it before, I don't believe it will be back. And, I'm saying this as Asher's mom, not as an engineer. Screw science.
Posted by Steph in
Clinic Visits, Counts, Home after Treatment, on Thursday, January 24. 2008 at
So, Asher went to clinic today at 2:30pm. It was his 9-month post-transplant brain tumor clinic, but they had asked us to reschedule last month to this month, so he is 10-month post-transplant, however, no tests were performed today so the discussion was regarding December 2007 tests/scans.
The transplant doctor came by the room and said hi to Asher. She said she didn't recognize him, but she recognized me. Then she carried him off to go see a transplant nurse-practitioner that cared for Asher most of the time during his transplant, but she had already gone over to the hospital. She just kept saying he looked so good.
It was a pretty low-key appointment. The clinical nurse, oncologist, and social worker were there. The oncologist checked Asher, although, Asher was being uncooperative today. It was weird, because when we got there he said, "Where's Dr. Etzl?" with excitement. But, as soon as the doctor came in the room, Asher wouldn't look at him, have eye contact what-so-ever, and he wouldn't even squeeze the doctor's fingers with his hands when asked. They asked me a few times, "Does he talk at home? Does he interact normally?" etc.
The oncologist asked Asher (and me) questions such as:
Do you ever see 2 of anything? (not sure)
Has he had any infections? (no)
Has he had any fevers? (yes on 12/24/07 105.5)
Has he complained of any headaches where you could tell he was in pain? (no)
How's his memory? (great - he remembers things from today and even months ago)
He's 41.1lbs and 3'-7" tall today.
His counts on 12/18/07 (9-months post-transplant) were:
wbc 5.1 (4-12)
rbc 4.10 (4-5.3)
hemoglobin 12.8 (11.5-14.5)
hematocrit 35 (33-43)
platelets 275 (130-450)
segmented neutrophils 44 (25-50)
lymphocytes 41 (40-65)
monocytes 10 (4-10)
sodium 139 (135-145)
potassium 4.1 (3.5-5.2)
chloride 103 (96-110)
co2 23 (20-28)
protein, total 6.1 (5.7-8.0)
calcium 9.4 (8.8-10.8 )
bilirubin, total 0.3 (0.2-1.3)
magnesium 2.1 (1.5-2.4)
They said his kidney is functioning fine and all counts/levels were within normal.
We should be hearing within the next week or so regarding the schedule for the March tests....hearing, MRI (brain and spine), and heart or something (I forget, I think ECHO).
When I asked about when they will scan his spine again (they didn't do it in Dec '07), they said they will do it in March. Since he did not have radiation, and on very rare cases a recurrence could begin in the spine, they will scan his spine.
And, remember, because Asher did not have radiation, he continues MRIs every 3 months the second year post-treatment, just like the first year post-treatment.
The clinical nurse ended the appointment by saying, "It was a very tough protocol he followed. He looks really good."
It was, tough, and we are very thankful, to the entire medical staff at PCH, for getting Asher to a healthy state. I do believe without medicine, we wouldn't be where we are today.
However, I also believe "that it was not Asher's time to go." I think the second craniotomy was miraculous. I think healing from the biggest infection / head wound involved miraculous healing. It was also the break he needed in the protocol to be strong for the transplant. It wouldn't matter to me what anyone else says, this is what I believe.
There are memories of crying in those clinic rooms....to smile today felt good. I will allow myself this happiness.
Oh, and I remembered one more thing....I seem to remember a little piece of this appointment as time goes on here....I was asked if Asher was going on a Make A Wish trip. I said no. Then I was asked, "Don't you believe in it?" Then I sat there with confusion, in my mind and heart, and I stumbled with my words, "I guess, not for us." I guess I always thought Make A Wish was for really sick kids. Asher isn't sick. Then I was told, "Well, if you change your mind, it would be a nice vacation." I don't think I'll change my mind, though. Maybe it is just because of our family size....and a trip would everyone would be far too stressful. Also, Asher didn't understand cancer, and he didn't / doesn't understand what a wish is. I took Asher to Georgia in September '07 and he had fun and I have memories with him and he still talks about the trip, however, Scott doesn't have those memories with us. I don't know....
Posted by Steph in
Counts, Scans, on Friday, June 22. 2007 at
Asher's creatinine level is good and he will have two more nights of fluids and then he is DONE. He needs to drink drink drink.
Asher's counts are good, roughly:
hemoglobin 12.7 (normal)
platelets 279 (normal)
ANC over 2000 (normal)
He continues 2 meds: acyclovir and bactrim, still.
Asher WILL get his Broviac surgically removed on Tuesday. Yeah, Asher!! I'm so thrilled for him!
I shared all the good news with him and he had no idea what I was talking about, except that in five days he will get his catheter out. I guess that isn't a bad thing. Sometimes I wish I didn't have to know what any of this means either.
I remembered today that Asher complains about his legs hurting, almost every day, quite often after he gets up from his nap. He says he can't walk sometimes. I wonder why the leg pain persists, but I was thinking maybe it was growing pains and the fact that he runs like crazy as he plays. I guess I'll never really know for sure on this one.
Life is good right now and we are so blessed to be 'healthy' and growing. So, I think I should get some good sleep tonight.
Scott said he has some stories from today, so I hope he can find the time to make a post about it. He did tell me about running into the plastic surgeon near the cafeteria. She asked about Asher and said if we ever want to come in to discuss the back of his head (where he has no hair due to the head wound), to feel free to do that. I know I do want to talk to her, but I don't think he is near ready for any surgery until at least next year, but it is worth thinking about, and understanding what options are out there.
Thanks again for all your emails, well wishes, smiles, thoughts, and prayers! Just really feeling extremely blessed right now....
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
Clinic Visits, Counts, Home after Treatment, on Wednesday, May 9. 2007 at
Went to clinic this afternoon. Doc says Asher looks just fine. In fact, she said he looks wonderful, gorgeous, with his hair coming in.
I asked her if it would be possible to have the Broviac taken out in outpatient surgery on June 21st, after his MRI. She said it was a nice idea, putting him out one time, but the concern would be if the MRI showed something.... There I was, again, being so optimistic that that hadn't really occured to me. But, I think she is going to talk to the Tumor Team, Asher's oncologist, and see what he thinks.
Asher will start Bactrum, two times a week, starting this weekend. He's still taking Acyclovir two times a day and Prevacid one time and 1000mL of fluids at night.
We are going to clinic appointments every two weeks now. I'm thrilled about that!
Was nice to see the tumor team social worker stop in as well as the tumor team clinic nurse stop in. It was a very fast in and out though today, which was nice, especially since I had the girls in the appointment this week.
Check out these counts; aren't they great!
wbc 6.1 (4-12)
rbc 3.58 (4-5.3)
hemoglobin 12.0 (11.5-14.5)
platelets 339 (140-450)
neutrophils 57 (25-50)
monocytes 12 (3-15)
Also, two other things....(1) Asher's fingernails are starting to "shed" again (just like they did last November). I clipped them to try to discourage Asher from pulling them off too early. So far he only ripped one in half and it didn't bleed. (2) Asher can jump, two times in a row, without holding onto anything. So great to see his physical strength coming back full steam!
Posted by Steph in
Clinic Visits, Counts, Home after Treatment, Scans, on Thursday, May 3. 2007 at
Asher went to clinic for a blood draw today (no doc checkup because they were harvesting bone marrow / doing a bone marrow transplant for a patient).
wbc 4.9 (4-12)
rbc 3.41 (4-5.3)
hemoglobin 11.6 (11.5-14.5)
Reticulocyte Count 4.8 (1.0-2.0)
platelets 282 (140-450)
monocytes 13 (3-15)
Everything rising ON ITS OWN now!!! I was so worried his ANC was dropping but I was wrong. So, now I am of the opinion that Asher is tired because (1) he plays/runs hard and (2) the nightly fluids are causing him to have to urinate a lot and he is old enough to want to hold it so he tries/does sometimes and then it disturbs his sleep. Scott and I are both getting up at night to check/change diapers too because we got tired of washing his sheets every day from overflowed Huggies. I'll just keep giving him naps if need be and know that he is doing great!
Asher's MRI was from 4pm-5:30pm today. Asher was so anxious this morning, and even last night. He ASKED to go to the hospital! The delays are normal/expected but still make for long days. Asher did fine going in. We saw the MRI machine together, while standing in the hallway, and the anesthesiologist put him out via an injection through his tube of his Broviac while he was in the hallway. Asher woke up fast and irritable (was already awake when they came to get me from surgery waiting). That's always the hardest part. This time I asked for Zofran because he kept saying, "Owie owie" and he said he was going to be sick. He didn't get sick. He has some episodes of crying out in the van on the way home, but all was okay in the end. Finally home by 8pm....seemed everywhere we tried to go on the highway or the side-roads, there was an accident. Hopefully we will have the MRI results no later than Friday.
Thank you to those that sent thoughts, prayers, good wishes....meant a lot to me, especially this morning when I couldn't fall back to sleep after 3:30am. I must now go to bed and hope for a better night sleep than I had the past two nights.
Posted by Steph in
Clinic Visits, Counts, Development, on Wednesday, April 25. 2007 at
Asher had his weekly clinic visit today. It got pushed to 8 days since last appointment, instead of 7, because the doctor didn't have an open time yesterday.
Weight 17kg (37.5lb)....I'm just not sure I'm understanding all this weight gain. I think I'll ask her when she calls me tomorrow. Scott said the doctor was excited about the weight gain.
Height 40.25 inch
wbc 3.8 (4-12)
rbc 3.24 (4-5.3)
hemoglobin 10.7 (11.5-14.5)
platelets 239 (140-450)
monocytes 23 (3-15)
We were told the red blood cells were the last thing to come in after a transplant....so you see they have gone up in the last 8 days! Yeah, Asher! I'm still amazed at how little he needed for transfusions. They had warned us that Asher would need a lot during and after transplant, but it just wasn't that way for him I guess. Last week the doctor even told Asher he could ride a "big boy bike" (instead of just his tricycle) because he is doing so well and his platelets were high enough....but....Asher doesn't have a big boy bike (or doesn't know about the one Scott has put away right now). I would like to see his balance get even better before I put him on a bike....who knows, maybe I will always be a horrible worrier when it comes to him and bikes....
In one week he has his MRI. I expect nothing but clear results. Prior to his MRI he will have a nurse only visit to check his counts.
I'm really excited too because after the MRI, they think Asher can go to clinic appointments every 14 days instead of every 7! Perfect timing because I could then plan my OB appointments one week and Asher's clinic the next week and then repeat. Anything to lessen the driving and such with gas prices at $2.93/gallon.
I noticed Sunday night (Day +40) that Asher's eye lashes had started to grow! And, now today his eyebrows are even very defined and his scalp is "dark," meaning we should feel stuble soon. This is about how long it took for his hair to grown back after his 3rd round of chemo in September; looking back his hair was coming in at the end of October.
And, to add to this entry, tonight is chicken on the grill for dinner. Asher said, "I like chickens, don't cook 'em!"
Posted by Steph in
Clinic Visits, Counts, Home after Treatment, on Wednesday, April 18. 2007 at
wbc 4.9 (4-12)
rbc 3.07 (4-5.3)
hemoglobin 10.0 (11.5-14.5)
platelets 178 (140-450)
Asher has been scratching at his head scar and has some bleeding spots. We're supposed to put bacitracin on it.
Asher looks good. Nothing else to report.
Posted by Steph in
Clinic Visits, Counts, Home after Treatment, on Wednesday, April 11. 2007 at
Asher's weight is up to 16.7kg. According to the nutritionist, Asher is now eating 95% of his calories (and we no longer have to write everything he eats down on paper)! I knew he had picked up his eating, but wow! He's doing just fine there. Drinking is another thing....
He needs 1 liter of fluid per 24 hours. This is to protect his kidneys from the harsh transplant chemo(s), long term kidney affecting chemo(s), and from the prophylactic med: acyclovir. Since Asher doesn't, and would never, drink 1L of fluid in one day, they will continue the nightly fluids until around Day +100. The doctor said if the kids are taken off the fluids prior to Day +100 their kidneys stop functioning like they should. This only bums me out because it wasn't told to us like this before and I told Asher, the last few days, if he drank his milk or water, that he had at meal time or between meal time, that he wouldn't have to be hooked up at night anymore. I don't like "lying" to him. Scott even asked the doctor today, "Is there anything else that will come up that we should prepare for?" Asher is still "free" after around 8:30am each day and boy does he get happy when he is unhooked, "I'm free, I'm free!" he exclaims, almost singing.
Looks like the neupogen last Thursday night gave him a nice boost and I am so happy he hasn't had to have any transfusions post-discharge.
We will stick with the weekly appointments now, so that will be nice. Also, RSV season is officially ended and I think I can now take the girls (safely) into the appointments with Asher....still makes me quite nervous though....we'll see, maybe Scott can still come over for a "late lunch."
Scott also asked again about the MRI dates. Per the protocol (for Head Start III), they told us he needs the MRI at Day +50 and Day +100. So, that is around 5/2/07 and 6/21/07. Scott asked that they schedule the MRI for us and get us in first thing in the morning.
At home he continues to "get better" each day. His attitude is improving, irritability is going down, and his strength is getting better. Although, getting the neupogen shot set him back a little; he aches and hurts from it. One shot gives him such a huge boost. I am still not very pro-medicine, so didn't dig into the oxycodone (pain med) or anything like that. I just remind him to rest. We go outside two times a day, for short times, around 1 hour maximum. It has been windy so he has to wear his mask and he doesn't fight it. Today he didn't watch any TV until after dinner, and then it was just one 20 minute show, then off to bath and get hooked up and to bed. He just played with Alexa and Aubree all day, besides his visit to clinic which put us leaving the house at 12:30pm and getting home around 3pm, faster day than normal today.
I want to thank everyone that has been signing the guestbook recently, especially those that have been following Asher's journey but have never posted before. It is really nice to know who has been coming here to check on him!
I wanted to mention, too, after I got an email from a friend today, the hospital will "refuse" and return to sender any mail they receive for Asher now that he is no longer admitted. We were told at one time that they would just send it to clinic since we were going two times a week, but the person in charge of the mail now told us they don't do that. She said they have too much mail and if the person isn't on the admittance sheet, the mail is refused. So please contact us if you do not have our home address and have something to send Asher. Thanks so much for thinking of Asher and sending cards and gifts to him!
Posted by Steph in
Clinic Visits, Counts, Home after Treatment, on Friday, April 6. 2007 at
2pm - Asher looks great they say...Temp 36.9...Weight stable at 16.3kg (fully clothed)...Cdiff from Monday (1pm sample) was negative...Nutritionist said Asher seems to be eating 60% of his calories and that is great less than one week post discharge post-transplant! Way to go Asher! She also said to increase his calcium (even give him Viactiv if he will like it - I have some cuz of taking extra while pregnant) and give whole milk instead of 1%. They are checking electrolytes and will order the IV fluids to continue through Monday (wonder if this is Tuesday now instead). Really need to lotion Asher up, says the Doc. He's sooooo dry. Really he is just peeling that layer of dark "tanned" skin from that burn from the chemo and the rash from the paliferim. Doc is advising us, because Asher looks so good, to move him to one day a week clinic and change Monday to Tuesday and skip Thursday. This is great because it is 3 hours for the kids and me away from home and 2 hours for Scott away from work for each clinic visit.
ANC 870 (needs to be above 1000 - doc called me at home around 5pm and said I need to give neupogen shot tonight)
9am - overnight IV fluids finishes and he gets unhooked....then Asher had 4 medium sized pancakes, 2 slices of bacon, 1 banana, and about 2oz of 1% milk
11am - Asher ate a few pretzels and had some red hawaiin punch
played outside some, no lunch, then off to clinic
once home from clinic, played outside some then inside to play and make cupcakes that Asher has been wanting to do so much
5:00pm - Asher makes cupcakes with mom and Alexa
6:30pm - Asher eats a great dinner - two servings of lasagna and some peaches and milk
7:00pm - Asher frosts and decorates the cupcakes with mom, dad, and Lexa
8:35pm - NORMAL bowel movement (been awhile since we have seen one of those!)
8:55pm - give Asher a neupogen shot (glad we had some left from last fall) & hook him up to IV fluids
In between all of that, Asher was very moody after his clinic visit, once at home (not in the SUV).
Last night he cried out twice because he had to pee and by the time I got to him he had overflowed his diaper....just thinking the IV fluids might be too much....disappointing he is being woke up from it....hoping tonight he will be able to get more sleep, if not, will try to make sure he gets a nap tomorrow so he isn't so crabby in the evening.
Posted by Steph in
Clinic Visits, Counts, Development, Home after Treatment, on Tuesday, April 3. 2007 at
wbc 3.9 (4-12)
rbc 3.26 (4-5.3)
hemoglobin 10.4 (11.5-14.5)
platelets 78 (140-450)
monocytes 28 (3-15)
Tonight, 12 hours of TPN and then discontinue and use IV fluids at night, probably until next Monday but recheck Thursday.
16.3kg weight (36lb)
102cm (40.2" = 3'-4") height
Use Lubriderm on his skin due to extreme dryness and peeling in some areas still.
When Asher was discharged from the hospital, he was given a special post-transplant mask: 3M 1870 Surgical Mask N95. He has to wear them when going into public areas (which is clinic or a store (which we haven't even taken him into one yet) and even outside if it is windy (since we live in the country with neighbors/houses and farms with dirt that flies around). He has to reuse them and they only let Scott take about 8. I looked them up on the Internet and we can get some on Ebay; a box of 20 for $1 a piece plus s/h. Or, even a company selling through Amazon has them for $3 each.
When I told Asher he had to go to clinic today to make sure mommy was taking good care of him, he said, "What are the doctors going to do?" So, as I opened my eyes wide, got really close to his face and head, I said, "She is going to look here, and here and here," (I was pretending to look into his mouth and ears and eyes). As he giggled, I smiled and said, "OK?" and he answered, "OK."
When we got home, about an hour later, Asher said, "I'm very happy to be home again." And, at the dinner table he told Scott the same thing, "I said I am very happy to be home again."
Everything in between just doesn't matter....it is what happens at home that truly matters.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Friday, March 30. 2007 at
Day 17 post stem cell infusion
I remember when we started, the Dr. said that we would be probably going home between day +15 and day +25. 4 weeks has sure gone quick for me.
Today should be the day we go home, as long as something unexpected doesn't happen. Asher will do his normal hospital stuff for just one more day.
Asher woke up at 8am today and said "I need to take a shower and take one nap". Exactly what mommy told him. He's got such a good memory.
You'd figure today would be the day for what happened right after that. First, had to use the urinal. So, with that out of way, in walks someone we had never seen before, she looks at Asher and he goes "DADDDDDDDDDDDDDY!"
So, she asks him where to put the "little huggie" on and he points to his leg. While she's trying to figure out to use the blood pressure monitor machine hanging on the wall, she whips out her Temporal Thermometer (the one that you swipe across the forehead that every patient shares) and proceeds to ask Asher if he's ever seen one of those before.
Okay, so I've let her have some fun trying to do things the right way (at least she had all of the precautions right) and so now I stepped in and said 'Whoah, hold on, you can't use that on him, he's got his own, he's a transplant kid. do you know all of the rules?'. She proceeds to tell me how she's from the third floor and they've taught her "all about" precautions.. 'See, I have the gown and mask and gloves on' she says...
So, I let her finish up taking his temperature under his armpit with HIS thermometer and weigh his pee and then when the nurse came in, expressed my desire to not see that PCT again until she has been properly trained on transplant.
So, now Asher is watching Mickey Mouse Clubhouse and hanging out in his bed. I'm going to start to bring stuff out to the car in preparation for discharge and get my Caramel Macchiato.
-- Update 12:15 --
The doctors came in today and really only had two things to say. First, the neupogen will not be given today due to Asher's counts, and second, the last dose of meds will be started around 5:30 and we can go after that.
Counts from 04:45
Our nurse said that's the highest ANC that she's ever calculated. I guess the wbc of 29 is the reason for no neupogen today. The nurse said that with the marrow starting to come in like it is with neupogen it just shot the white blood cells up that high today, it's not an indication of anything like an infection.
Asher pooped at about noon and they are going to do a cdiff culture on it since they have the opportunity. We've also been asked to bring a stool sample to clinic on monday because they want to continue to make sure it's not coming back.
I've started to load stuff into the Car in preparation for leaving and also have been slowly taking things off the walls and off the ceilings.
Asher's in a decent mood today and really has wanted to just watch TV and play with a few toys in his bed.
-- Update 16:30 --
Asher has been sleeping since shortly after 2pm. He was looking very tired in his bed and when I asked him if he wanted to sleep in the couch (daddy's bed) he said yes and basically fell asleep the minute I left the room to bring some stuff to the car. Besides changing one diaper, he's slept solid for 2 1/2 hours and I've fully loaded the car with stuff in the room.
Everything is done besides the last antibiotic and once that is finished, we'll give Asher a final shower, do a dressing change, clean off his broviac and get him new ends. He's got some shorts and a shirt here too. Then, the discharge papers will be signed and we'll go meet mom and the girls at the SUV.
I guess the nurses here all line up and blow bubbles when Asher is done and leaving. I hope Asher enjoys it.
Posted by Scott in
Chemo Round 6 & Transplant, Counts, on Thursday, March 29. 2007 at
Day 16 post stem cell infusion
Counts from 04:00
platelet 54 (look at that, going up on their own!!!)
Asher will get neupogen today and tomorrow because his ANC is close to 1000 and they want to give him a good boost before GOING HOME.
The doctors said that everything was ready for us to home tomorrow evening (7pm-8pm) if we still wanted to do that. if not, we wait until monday. If we go home on Friday, there will be two clinic appointments - Monday & thursday.
Asher is doing good today after waking up about 9am from the nurse coming into check him out and weigh him (16.3 kg), but mentally he has no desire to talk to anyone, play, or even be nice. All of the people who have been in during morning rounds have gotten the scowl or a "daddy hold my hand". The minute the leave he's back to a happy boy.
I need to run and get some prescriptions filled, so child Life will come in to play with Asher for up to 30 minutes while I'm gone. Thankfully the pharmacy is about 2 blocks down so it should be a quick trip.
-- Update 11:30 --
Okay, all scripts are at the pharmacy getting filled. I did forget to write down the dosages prior to bringing them, but we got 7 prescriptions that need to be filled. Most of these are apparently available over the counter at places like Walgreens, but I had the pharmacist just get them for me because some of them are probably more expensive than my co-pay and it's easier under the current circumstances to just pick them all up at one pharmacy instead of running around. All of this will be ready to pick up on Friday.
Biotine Mouthwash - 2x a day
Nystatin - 2x a day (actually, only needed if he has mouth issues/thrush or something like that)
Oxycodone - PRN for pain
Ondansetron (Zofran) - PRN for Nausea
Hydroxizine - PRN??? for ???
The doctors had good things to say today. Asher has had 10 days of negative cultures as of Friday, so they said they wont' be giving the Saturday dose of the Antibiotics. We're ready to discharge on Friday evening after 7pm, after the friday night dose of antibiotics (6pm-7pm). We would go home after the dose and then the home health nurse would meet us to go over the TPN and hook it up for the first time. it's also recommended that we either give Asher a non-iron multi-vitamin or inject a multi-vitamin into the TPN. That means the flintstones complete we have won't be okay for Asher and we'll need to get another vitamin without iron for the next year or so. There are a bunch of them out there, especially the gummi ones, so we shouldn't have a problem according to the nutritionist. We don't want iron in the vitamin because of the amount of red-blood asher has gotten (high in iron) and may be getting, little kids can't have an overload of iron. Any vitamin that has < 200% of the daily allowance of stuff is okay, no matter the brand. She said that there's a good "beauty and the beast" vitamin in the shape of Belle available, but she wasn't sure Asher would like that too much, LOL.
They're going to give us a special toothbruth to use with Asher that's especially soft and if we can brush the teeth a couple of times a day, that'd be good.
The TPN today is going to be running over 18 hours and will be 65% of his daily calories and 75% of his protein for the day. As of right now, Asher has two cheese hotdogs sitting in front of him that he asked for. He did eat a couple of bits, but said "I need to let them cool off" and isn't eating any more. Hopefully he'll have a few more bites.
They want us to try and keep food records at home so that we can bring the information to clinic in hopes of removing the TPN after a week, if not sooner.
While I was out at the pharmacy (20 minute trip), Asher chose to just sit and watch TV. he didn't want child life to come in, and he did great. he did say that he "called for me" and then I came, so he must have done it right when I was getting back.
Also, this morning, the social worker stopped in to see how Steph was doing and found me here, so she talked to me for about a minute and then said she was going to go and call Steph.
That's about it. Asher really wants to watch TV & play Sponge-Bob ps2 game. Should be a good quiet day.