Posted by Steph in
Home after Treatment, on Friday, July 6. 2007 at
And, this smile is proof that he has gained the rest of his life back....the final thing he couldn't do because of cancer....it has been 14 months since he had been swimming. I'm really thrilled for him and I'm nothing but happy, even with tears (of joy), to see him smiling, laughing, happy, and living! Especially after watching him last night being thrilled and so happy watching fireworks, which, by the way, we were able to do from the comfort of our own front yard because a high school put off 30 minutes of fireworks a few miles from our home (thanks for letting me know about it Kate)! We even had some friends come watch with us and that made Asher even happier! These are the moments we just don't take for granted (anymore)....small moments, usually only lasting 30 minutes, but they mean so much to us! I can't help but thank God, each and every day, for these moments.
Posted by Steph in
Home after Treatment, on Monday, July 2. 2007 at
I consider Asher potty trained now. He no longer wears pull-ups or diapers during the day! He generally only has maybe 1 accident a week, if that, and it hasn't been that long since he started wearing underwear full time, only two weeks. I'm really proud of him! Now that his nightly fluids are done, he is a bit more constipated and has to be encouraged to have a bowel movement. We really need to get him drinking more too, that would help with that!
His appetite is okay. Still good in the morning and then tapers off in the daytime. Sometimes, he only picks at his lunch, sometimes he does better.
I measured him last week and he's now 41" tall. He looked like he had grown more to me, but I guess 1/2" wasn't as much as I imagined it was.
Asher still definitely needs his afternoon nap, and a bit earlier, around 1:30pm now.
Asher is still wanting to walk on his tip toes. I am considering asking for PT to come to our home, but not sure if they do that. They would probably let us do PT, but have us come into the hospital. That would be a challenge for me at this point, but we'll see. I'm going to ask at clinic on 7/11.
Not much else going on. Hoping to see fireworks this week, but with the forecasted 117 degree heat for Wednesday, we may just drive up and down the country road so the kids can see them from the air-conditioned van! Last year the kids saw several shows in the distance on the way home from a show that we saw close-up. They seemed to almost enjoy it more from afar with the absense of the loud noise.
Posted by Steph in
Feelings, Home after Treatment, on Thursday, June 28. 2007 at
Not "...for making pancakes for dinner (instead of chicken and corn)."
Not "...for giving me Kool-Aide for lunch (instead of milk)."
Not "...for reading to me before bed."
But, "I love you for taking my catheter out."
That brought a lot of tears to my eyes. Lots of things are doing that lately, but this one hits the heart deep. If only it were that easy. If only I could have stopped him from needing that catheter in the first place....
Oh, and I forgot, Asher watched me put his pole (with backpack and pump) outside the front door this morning. He asked if the nurse was going to pick it up and I told him yes, and he didn't need it anymore. He was pretty happy about that. Home Health came and got it a couple of hours later. At next clinic, 7/11, we'll be taking some left over supplies that we have and they will be given to families that do not have insurance and need them. It will be nice to have some space back; seriously, some of these supplies seemed to have multiplied and take up 1/2 the under counter of the kids' bathroom.
Posted by Steph in
Home after Treatment, on Sunday, June 24. 2007 at
Asher had an unusually special sparkle in his smile this morning as he helped to flush his lines without first disconnecting the pump. Last night Asher slept without being hooked up to fluids. I was going to go back and try to figure out how many days it has been since he last was able to sleep free of tubes, but that's too much work for me this morning. It is at least prior to admit for transplant in very early March 2007, but I can't remember if he was having fluids at night prior to admit for transplant. Maybe that's a good thing, that I am starting to forget. Two more days with his Broviac and then he will be completely free. Almost all physical reminders of the past 13 months will be gone. He will be able to submerge his body, to the top of his head, in a bath or swimming pool after he is healed, maybe 2 weeks.
Posted by Steph in
Home after Treatment, on Saturday, June 23. 2007 at
Asher went grocery shopping with Scott today while the girls took a nap at home. It is the first time he has been in a grocery store in a VERY LONG TIME. I don't even know when I last 'let him' go or 'took' him there. He REALLY enjoyed it. He always did. I remember shopping with him during his first 14 months of life, just him and me, was always a very special time. I remember passers-by would say, "Boy does he love shopping!" as they watched him smile and giggle and talk. They would also say, "Enjoy it now, it doesn't last." But it did. He has always been a helper and a shopper; just fun memories. I'm glad he can start to have some everyday stuff back in his life instead of being so sheltered or closed-up.
Posted by Steph in
Feelings, Home after Treatment, Scans, on Thursday, June 21. 2007 at
I was up around 3:30am to go to the bathroom and, typical of late pregnancy, couldn't turn off my mind so got up for about 1 1/2 hours. Then I woke at 6am after a dream and went to help get Asher up, lines flushed, clothes and sandles on, and toys picked out, and into the van and off around 6:20am. Hopefully traffic won't be too bad. And, I'm not the only one up early this morning. When I went up to get Asher up, he's still sleeping but Alexa was up! That's pretty early for her to be up. After my shower, got laundry going...Asher's diaper overflowed (but we are almost done with nightly fluids, yahoo!)...dishwasher going, swimming pool water tested, and about to start cleaning and it is only 7am. That's how I'm going to deal with not being at the hospital sitting in the waiting room while Asher has his MRI, chest xray and blood draw. Alexa is quietly playing in her playroom and Aubree is still sleeping so I'll start breakfast once she is up.
And, AGAIN, thank you for the emails! I had a few tears in my eyes this morning as I read three new emails! It really does make it easier, knowing people across the world are thinking about my boy as much as me this morning!!
OH, AND, I did get an email yesterday from the transplant coordinator saying we should hopefully get a call from one of the transplant doctors by end of the work day Friday; that is when they hope to have the MRI results. And, hopefully the hearing test will be at 7am Tuesday (6/26). And, we should call and schedule a clinic visit for week of July 9th so the transplant team can see Asher one last time and then go over the test results and then Asher will be 'given back' to the brain tumor oncology team.
UPDATE #1 (9:05am): He went under around 8:30am because anesthesia was a bit late. He should be home around noon at the latest, I hope.
UPDATE #2 (11:38am): He's home. He can't walk straight, but that's just the anesthetic wearing off. He's watching a little TV so he can just rest on the couch. Scott said Asher did so well! He woke up in a good mood (how can that be???) and said, "Daddy, I don't want to be at the hospital anymore." So they left. Scott said Asher ate a cheeseburger on the way home. It must have been the special cocktail that Dr. Maze gave Asher prior to him waking up. Dr. Maze was Asher's very first anesthesiologist; he's a good guy. I remember one time he went into his schedule and changed it so he could be there for Asher during his surgery! Usually if we find an anesthesiologist we like, they often just tell us they go where the schedule takes them and we can't really request them. Anyway....feels so good to have him home. I got the family room all dusted, blinds and all, and vacuumed, and 3 loads of laundry done. If I could have slept, I would have. The girls have both been napping since 9:45am! Off to start lunch for the girls and me. Check back tomorrow; we should have the results then! (I'm still loving all the emails! You all make me smile!)
Posted by Steph in
Home after Treatment, Scans, on Wednesday, June 20. 2007 at
Thank you! Thank you for the emails I received in the last week. It is really good to know you still check-in on us, still think about us, and still pray for Asher!
Last night, or should I say this morning, was my first dream about Asher's health. First ever that I can remember. I was sitting in the hospital with Asher, sorta cuddling, and the neurosurgeon came in and started talking to me. He was talking about the MRI results and something about the side of hearing loss. I'll say I felt the dream going in the direction I didn't want it to go and I woke myself up I guess. The dream was only an hour ago and I still can't forget it.
I've been having other dreams this week too, but not related to Asher's health.
I want them to stop, but know it is very common for me to dream a lot in my last 8 weeks of pregnancy. I don't sleep well because I'm not comfortable and I wake so much having to take care of the not-so-full bladder that Andrew is laying on.
So, I'm not going to worry the dream was anything more than just my worries about some 'signs' (or symptoms) that I have wondered about in Asher the last two weeks. I'm not going to do it. Worry. I wish the MRI was today, but one more sleep and the MRI will be early Thursday morning, tomorrow morning. There is no sense in worrying till the need to. The MRI results should hopefully be told to us on the phone on Friday so we don't have to wait over the weekend to hear on Monday, but I'm not completely sure about that.
I had received an email last week regarding Asher's blood draw, chest xrays, and hearing test, in addition to his MRI and then Broviac removal surgery. I was to hear confirmation this week on when everything would be scheduled, but have not heard on everything. The chest xray and blood draw will be done in radiology or recovery and we're just trying to figure out the hearing test time. Asher can't go after waking up from anesthetic because he is so aggitated, so it will most likely be very early Tuesday prior to surgery or another day.
Scott will be taking Asher to his MRI very early in the morning tomorrow. I would like to, but it is just too difficult to handle Asher when he wakes up now that Andrew is so big, and Asher is so big and heavy too! Will update when we know more. Thanks again for thinking of us and for praying for us! Asher has come a long way and we are truly blessed he is doing so well following a year of horrible dealings with cancer.
(I've updated two of my posts from earlier this month to public instead of private.)
Posted by Steph in
Home after Treatment, on Saturday, June 16. 2007 at
Asher lost his balance and bumped into the wall twice one day this week, hitting his head. The second time he smacked it so hard I put ice on it (or I gave him the ice and he held it on). Then after his nap today he woke up upset, saying he was sick to his stomach. He has done this a few times in the last two weeks. The thing I have hoped for when he has woken up from his nap is that he is just hungry for dinner since it is near dinner time, so I assume that, and feed him. He hardly ate anything tonight, though.
*sigh*... it is difficult...this new life of constant wonder and worry...I say constant, but it isn't like it overwhelms me to the point that I can't function or live, and I try really hard to not obsess. I always have in the back of my mind, "Oh, no, that's a sign...." A symptom. Or is it? Do I overanalyze everything? Scott tells me I do. I guess that is who I am. I'm not worried right now, not really, just wondering and hoping and praying (and all of that!) since he's not vomitting, waiting till next week's MRI is appropriate.
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
Cord Blood, Home after Treatment, on Friday, June 1. 2007 at
He is doing well. He is a bit moody and irritable and we're not exactly sure why. He is fighting with Alexa a bit more than normal. Personally, I think he isn't eating quite right and not getting that afternoon nap this week is really burning him out (his Daddy is home this week and he does 'get away' with more then). So, hopefully this can all improve starting again this next week. If it doesn't, I am going to start to worry (more).
I came down with a sore throat and cold through last weekend and have been tired, congested, and feeling pretty crappy all week. I am sure I picked it up at the girls WELL-checkup. Seriously, I HATE taking WELL kids to the doctor!! The sick kids and well kids check-in at the same counter; doesn't that just seem wrong? But, I had skipped Aubree's 9 month checkup and Alexa was already 2 months past her 3 year checkup, so in we went. Anyway....sure enough....I got sick! BUT, fortunately, the children don't seem sick....I've been waiting for it to hit them and it hasn't. I am so hoping they, especially Asher, will be spared. We have tried so much not to expose Asher (and me, mainly because I pick things up pretty easily, especially when pregnant) to possible illness.
I have an application going off to the Cbr (Cord Blood Registry) for their DTP (Designated Transplant Patient) program. They do have "Brain Tumors" on their "current stem cell applications" list, while Viacord does not. This does not mean for sure they will approve Asher's application. Asher's oncologist has to fill it out and fax it in, and it is in his hands right now. If this is approved, then we can bank Andrew's cord blood specifically for Asher to use in the future if he needs it. It isn't completely free, but the cost is small. It would cost us $150 and any cost my OB would have to collect with the kit (but she told me she is writing in the file so she or her partners will not charge me for this service). If this is not approved, which it may not be due to Asher's future treatment options, we would then have to sign-up for the Family Banking program if we want to privately bank the cord blood for potential use in the future for any of our children. This is costly initially, but bearable, and then there is a annual fee to bank. But, that isn't the only thing to think about. There are a lot of reasons banking the cord blood just isn't necessary as one of Asher's transplant doctors told me and from the reading I found. I have thought a lot about this, from the start of Asher's diagnosis, too, especially since I had Aubree only 6 days prior to Asher being diagnosed. I was told to NOT feel guilty about not banking Aubree's cord blood because (1) it may not match Asher (very small % chance it does, however, cord blood is more 'forgiving' than bone marrow itself, meaning it doesn't have to match 'as well' (whatever that means)), (2) the number of cells from the newborn cord blood might not be enough for what Asher needed (we even had to do two collections of Asher's peripheral blood to get enough cells for his autologous stem cell transplant (if I am saying that correct)), and (3) we still have the actual children in case Asher or one of our other children need a 'bone marrow transplant.' The fact is, if Asher's cancer comes back, the Medulloblastoma tumor in his brain, then we have to radiate to save his life. I was even told by Dr. Finlay that they wouldn't recommend another transplant for Asher, but I keep telling myself that just might not be the absolute truth. Science/medicine changes. So, I am wondering what Asher's oncologist will put on the DPT application form. Also, it is important for me to be able to have, in writing, that if one of my other children get cancer or need those cells for an illness, that we be able to apply/petition to use those cells for another child in our family, not just Asher. The nice CBR man on the phone said it is possible to do that, but I need that in writing and so far I haven't read that anywhere. I feel especially 'weird' (not sure how to describe how I feel) about banking Andrew's cord blood NOT for Andrew, but someone else, brother or not. So, the Family Banking might make more sense, even just for a personal thing for me....however, 'almost free' is great, and Scott is hoping more for that! Also, I have considered donating Andrew's cord blood instead of banking it.... So, there are a lot of things going through my mind about all of this. Scott hasn't given me his/any thoughts, other than "if it is less than $500, do it" (and it could very well be more than 4-8 times that, depending on how long it is banked)....so this one lays on my shoulders alone.
So, that's all that is going on here, besides daily life stuff.
Please continue to pray for my friend Susie's daughter, Amber, who had major surgery to her face and would appreciate prayers!!
Posted by Steph in
Feelings, Home after Treatment, on Saturday, May 26. 2007 at
One year ago today our lives changed. We got the very unexpected news that our oldest child, our 3-year-old, had a BRAIN TUMOR. There was this thing growing in the back of his brain, a mass. They expected it was CANCER.
"No no NO NO, this can't be happening!" That's seriously all I thought and all I remember thinking and still today, all I think about sometimes. The moment I got to the hospital that night, finally around 8pm, and saw my little guy sitting in a chair with a smile on his face, but saying he wanted to go home, my heart sank and grew at the same time. I looked at him differently from that moment on. This little boy, my first baby, that I named "happy & blessed," my Asher, he was about to undergo things that made me sick inside just thinking about.
Today, 57 days post-treatment, when I look at Asher, I feel so proud of him. All he has done to overcome the pain of this past year....most people say to Scott and me that they can't believe it has been a year, but it has been the longest year of my life. It was just so slow. And, in many ways, it doesn't bother me. I had a lot to learn and I knew they were days I had with my son and I wanted them to last FOREVER. So, while sitting in the pain of the moments, we found joy.
Sometimes, I understand now, why some people have emailed me about their child who is fighting this nasty monster called Medulloblastoma and have said, "No we don't keep an online journal." One person said they want to forget when the treatment is over. One person said that keeping the journal makes it more real. I'm feeling that lately. I want to forget. I want it to feel less real. Unfortunately, every time we go to clinic, it FEELS more REAL. The doctor asks questions and REMINDS you it CAN COME BACK. I have only been to 2 recent clinic appointments with Asher and I have gotten a bit depressed, more so, after leaving there. It was easier when I just sent Asher in with Scott. I didn't have to deal with it. People say I am strong, but I don't feel like it. The strong one is Asher. He is truly amazing. Amazing. I'm so glad he is my oldest child and that he copes well, and grows well, and thinks well, and learns well, and lives well. I'm just so proud of him and I feel blessed that he IS "happy and blessed!"
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
Home after Treatment, on Friday, May 18. 2007 at
Asher ripped one of his nails yesterday, his thumb nail, to help it come off I guess. The nails shed around 1/2 way up the finger, but they take awhile. So, the one he helped bled and bled. I got it to stop okay though and made a nice 4-year-old finger-tip bandage out of a large bandaide by cutting it a little. Asher was quite upset by all the blood but he forgot enough (in 30 minutes) that when Scott got home from work Asher didn't even mention it to him, and I thought for sure he would. He has two other fingernails still hanging on and I cut them as low as I could so he can't pick on them too.
Asher went without a nap yesterday and it made for a bit of a crabby evening. I think I would prefer to stick to the naps.
His eating has also lessened somewhat. He still eats a pretty big breakfast, but lunch and dinner not as much. However, with that said, he is drinking more. Could just be the heat. I know when it hits 100 I don't like to eat either; I just end up drinking a lot.
Posted by Steph in
Home after Treatment, on Wednesday, May 16. 2007 at
It is so nice to go this week without having to go anywhere! Well, I did run one morning, early, to do my 1 hour glucose test for this pregnancy, but that was close by. Can you believe these gas prices, over $3.00 now, ugh! So, without clinic this week, Asher is doing just fine. He is eating three meals a day. He is trying to potty-train (but I have to constantly remind him). His hair is growing more and his nails are still wanting to shed. We are all napping from around 2:30 or 3pm - 4:30 or 5pm. The kids could maybe go without it (except Aubree) but I need it! Asher and Alexa have been playing a lot. They are very creative and imaginative with their play. They play puppets, trains, dollhouse, trucks, cars, and we do some educational craft (trying to start this one time a day while Aubree naps). The big kids (and now Aubree too) still like their favorite activity of jumping on the couch or rearranging the cushions to make forts or whatever. We also try to get outside around 4pm in the backyard, where there is shade so the kids can get some time in their play pool and tricycle, etc. Asher has recently taken to holding Aubree's hands and telling her to "stand up," and he helps her walk. It is pretty darned cute! Asher and Alexa are getting better at communicating and not fighting as badly as they once did. The other day Asher said to Alexa, "I'm very disappointed you wrecked my train track." She had. She had gone into the play room and decided to just kick his track apart, as he was sitting there playing. I think he sat there in shock at first. Then he was sad when he said what he said. I was surprised, a little, that he didn't yell at her at all. So, hopefully things will get better with the two of them as they are now together every day and working out feelings and learning to share and all of that all over again. There has been an adjustment period.
Asher started his Bactrim and will get it each Tuesday and Wednesday of each week, twice a day. He is still taking the Acyclovir twice a day and the Prevacid one time a day, but I think those might stop soon, not sure. He still gets 1000mL fluids at night and daily flushes of the lines and dressing changes about every 5 days instead of 7 days (because he is so active). Home health comes with supplies about every 5-6 days.
That's a quick update. I'm having trouble even thinking about updating here as I am so worried about my friend Susie's little girl, Amber. I just can't imagine what their family is going through and I want to be there but think that is an intrusion and also not necessarily safe for Amber's immune system. The situation also brought back some memories of October 6th, when I was alone at the hospital and Asher had emergency infection surgery at 10pm. It felt horrible. The news wasn't too good after the first surgery and I was told it could very well be life threatening....you're dealing with CANCER, but it isn't often you HEAR "It is safe to assume this could be life threatening," nor can I ever forget how that made me feel. I just wanted to make sure Susie wasn't alone at the hospital the other night. It is hard to call PCH and get information because they have a policy of not talking about the patients with anyone else. However good that policy may be, we DO make bonds with other families while we're inpatient. We DO care. We DO start to think of them as family. We DO feel pain when we see their pain. We DO want to do something to help, to make it better, to make the pain go away.... I just feel like all I can do for Amber and Susie is PRAY, so that is all I have been doing....
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!