Posted by Steph in
Cord Blood, on Friday, July 27. 2007 at
By the way, for anyone pregnant, reading this, please consider donating your baby's cord blood if you don't want to bank it for your own child/family. Talk to your OB about it. Get a kit from CBR before you go into labor and bring it with you. I wish I had known how easy this was to do when I was pregnant the first three times. I believe it is completely free to donate. CBR was great to work with; George, thank you for making this so easy! Thank you CBR for having the Designated Transplant Program! And, a special thank you to my OB for waiving her fee for this collection.
Posted by Steph in
Cord Blood, on Monday, June 11. 2007 at
Update 6/13 13:06
The kit just arrived via FedEx. That was fast!
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
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
Chemo Round 4, Cord Blood, Feelings, on Monday, January 1. 2007 at
We have not done radiation to date. I hope to never do radiation. But, since we have not done it, it is still an option.
Transplant is not a once-in-a-lifetime thing. If Asher's tumor / cancer would come back, and another transplant was recommended, if he did not have enough of his own stem cells we could go to other sources. I've already decided we will be keeping / banking our newest baby's cord blood; baby is due in late July 2007. I'll never forget the four times my OB asked if I wanted to bank Aubree's cord blood and how I said no each time and how I wondered why she was asking so much and why she never asked with Asher or Alexa....I'm not sure how much it costs, but add it to the costs we have to save our son's life. Priceless, as far as I am concerned. The money will come from somewhere.
I think I have come to terms with everything....1 1/2 more days before we begin....till then, only one night left of 2006. A year that has brought a lot of pain, a lot of joy, a lot of miracles, and a lot of love. I am filled with tears as I let go of the 2006 pain and begin 2007 with hope.
Happy New Year to everyone reading!