We are doing great at home. Brynlee has been a little bit sick the last few days after chemo and hasn't been eating too much and then sometimes looses some of what she eats. She isn't acting like she is totally miserable, but she is not as happy as she was before this last round of chemo.
I am working on setting up a "real" blog through blogger, but I haven't gotten it quite how I want it yet. I don't know that it will ever have everything I want on it, so I will post it as soon as I have it somewhat ready.
Otherwise, we are doing lots of snuggling and holding. She will have a scan on October 5th and we will meet with Dr. B right after for results. Then she is scheduled for round 3 of chemo on October 10th unless the scan or her blood work shows something and Dr. Bruggers changes course.
We had a very short stay in the hospital, and Brynlee is back home today. Brynlee started receiving chemo yesterday at about 4ish p.m. She was given Zofran and lots of liquids before the chemo was started. She didn't eat very much, but she seemed to tolerate the chemo just fine and so far (knock on wood) we haven't had any vomiting. She is a tough little stinker. They discontinued her Lovenox shots since the ultrasound showed that her clot that was in her neck was still clear, so now we are done with the Lovenox shots, but we will start the Nupagen (I don't know the spelling and it's too many mouse clicks to search it, ;-) ). Basically this is given to help produce blood cells and what not since the chemo kills those.
We will have some blood work later in the week to check on her counts, but her next chemo is scheduled in three weeks. I thought they were going to scan before chemo (I wasn't there today when she was discharged from the hospital), but Blair said they didn't mention anything about it. I will probably have to call her doctor to clarify this. Anyway, unless she has issues with her blood counts or she gets a fever or has breathing trouble then we will be home for a few weeks (again, knock on wood).
I don't know if I have mentioned this, but we are starting to see more improvement in her function of her legs and feet. It's not drastic improvement by any means, but we are starting to feel some resistance when we move her legs, and she does have little bits of movement here and there. The physical therapist told me it can take a long time to get fully functional again, and we don't know if she will ever regain all of her function and mobility, but we are seeing some good signs. Also, she has lost pretty much all of her hair in the back and sides from rubbing on the bed and whatnot. Blair wants to shave it off, but I'm holding onto it for a little bit longer until the top looks completely funny.
And....we're back. So the weekend went by way too fast and felt way too short. We enjoyed every single minute being out of the hospital. Brynlee was so happy all weekend, and she has been kind of sad since we got back here. I feel bad that she doesn't seem to like her nurse. Anytime her nurse comes in the room or talks she starts to cry. She seems nice to me, but I guess Brynlee is bothered by her for some reason.
They came and did blood work last night, and I received a call at 8:45 a.m. this morning (15 minutes earlier than promised, go figure), and we were told that her blood counts were all good so we had the go ahead for chemo today. So I came to the hospital at 11 a.m. and got her checked back in and she has just been receiving fluid since we arrived, so I am thinking that she is going to puff up again and be kind of swollen. They are planning on doing another ultrasound of her neck to make sure that the clot that was in her neck is still gone. So I guess she will get the chemo infused tonight/overnight and be sent home tomorrow. It will all depend on how she reacts to the chemo and if she is eating okay. The one nice thing about this visit is that she is not constantly hooked up to the heart monitors and everything, so we only have one line of fluid attached to her central line. She is much easier to hold.
Thank you for your continued prayers and love for our family. I don't know that I will ever be able to thank everyone individually. Your kind words and deeds have made this burden a little lighter.
We made it home about 7:45 last night. I was almost nervous on the way home from the hospital in kind of the same way I was nervous the first time we brought Kaitlyn home from the hospital after she was born. And then it was almost like we were immediately back to our old routine. Brynlee took her bottle and then shortly after fell asleep and slept through the night. I would be lying if I said I didn't check on her a couple of times. We were able to get our first home health delivery last night for her Lovenox shots, and then our home health nurse came this morning to go over a few things and help us give her shot (which we didn't really need any help). Brynlee seems to be very happy and content. She has enjoyed seeing her sisters.
They will come and draw some blood work on Sunday to make sure that her counts are okay for the next round of chemo. They will call us at 9 a.m. on Monday (yeah right) to let us know if everything is okay, and then we are anticipating being back to the hospital Monday at 11 a.m. for chemo and hopefully a shorter stay. So I will be taking a hiatus from the care page until at least Monday unless we run into trouble over the weekend. We are praying for a quiet weekend with no fevers, no runny nose, and no breathing difficulties because we don't want to go back to the hospital before Monday. I posted a new picture of the girls with their new beanies that my sweet friend Danae sent us. The first of many, many hats for Brynlee. I am noticing more and more hair on her clothes, so it is just a matter of time now before it is all gone.
9/15/2011 - Last bottle before leaving the hospital
Brynlee had her MIBG scan today, and it showed pretty much what we already knew as far as where the cancer is in her body. We had to wait awhile to get the scan to happen because we got down to radiology to have her sedation started and there was no order for sedation. So we waited for them to get an order and then we had to wait because the sedation medicine that they wanted to use had to be sent from the pharmacy, but it finally happened. She had to go back on oxygen during the scan and after because of the effects of the sedation. She has been off of the oxygen for a couple of hours and has been sleeping and has been doing fine. She drank apple juice and some formula immediately after and did great, so we are pretty much ready to go. We are going to wait to leave until her scheduled Lovenox shot because the home health planning people couldn't confirm that our insurance would cover the shot through home health, so we are waiting for her next scheduled dose here at the hospital, and then we will go home. We can't get the shot through the regular pharmacy because they typically don't have it in the dosing that she needs. We have been getting lots more training today for all of our new nursing responsibilities that we will have at home, and we both practiced changing a central line dressing and the caps on the line on a mannequin since Brynlee's central line dressing and caps aren't due to be changed again until Monday. Anyway, there is a lot to remember and keep track of, but we will figure it out. I know I have already said this, but we will be back on Monday for her second round of chemo as long as her blood draw on Sunday shows her counts are good. She will be in the hospital a couple of days depending on how she reacts to the chemo and if she is sick or not eating or whatever. We don't really know how she reacted to the first round of chemo because she was intubated and sedated, so it will be interesting to see how things go.
Wish us luck! I hope that we have a couple of uneventful days at home with no fevers or other worrisome problems.
They keep telling us that we are going home tomorrow. This is both exciting and overwhelming. We aren't taking home the same baby that we came here with. So we are getting a lot of training and information to get us ready.
Brynlee came off of the nasal canula yesterday afternoon. She has done pretty well so far. The isotope from Canada arrived today, and she was given that at about 2 p.m. today. They are planning on starting sedation at 10 and then having the scan at 11 tomorrow. She had some baby food today, but she was pretty tired and had just had a bottle, so we will try again later.
Overall, she is doing well. Hopefully tomorrow night we will all be home in our own beds at least for a couple of nights. We will be back here to the hospital on Monday for round 2 of chemo.
Brynlee's oncologist came in this morning and said that she is doing great, and she is still hoping that we can get out of the hospital for a couple of days before her next round of chemo. She is now down to 0.1 liters of oxygen, so she is almost weaned off. We are hoping to stop her feedings through the NJ tube and get her eating her baby food hopefully tomorrow. She has been taking her bottles, and she is doing great with that. I can't wait to get the oxygen and the feeding tube off of her.
The physical therapist came last evening and said that she can tell a difference in Brynlee's legs when she (the physical therapist) moves them. They are still extremely weak, but she felt there was possibly some tone. We will most likely have physical therapy at our home after we leave the hospital because it is too risky to take Brynlee to a physical therapy office because of illnesses.
She is still scheduled to get the isotope injected tomorrow (if Fed Ex can get it here this time) and then the MIBG (or whatever it is) scan on Thursday. Again, this is a scan where the isotope attaches to all of the places in her body where the cancer is present. I don't know if this is a scan that is just being done initially or if it will be done again down the road.
I can't say thank you enough for everyone who has helped us and prayed for us. We have a very long road ahead of us and while the prognosis for her recovery/cure is good and I think everyone (including her doctors) is optimistic at this point, we still need to get rid of the cancer in her body.
Great news!!! We got the studies back regarding this gene that determines whether Brynlee is high risk or intermediate risk. The gene was not amplified, so Brynlee remains at intermediate risk even though she is stage 4. The 5-year survival rate for intermediate-risk patients is 85-90%. I think her doctor, Dr. Bruggers, was almost giddy giving us the news and was smiling. She had been so serious up to this point. And, we possibly will be coming home before her next chemotherapy, which should be a week from today on Monday. Brynlee just has to start breathing without her canula and eating without the tube. She is down to 0.6 liters on the air. I brought her bottles from home today, and she did take 4 oz from her bottle with no problem, so we are hoping to get her feedings going and get her some baby food soon. We are on track to possibly have a break from the hospital for a couple of days if everything goes well.
The plan at this point is to have her second round of chemo next week and then once we do the scans following that chemo to see how the tumor is responding we will have a more definitive course of treatment. At this point, we aren't considering a bone marrow transplant, although this could change in the future if she doesn't respond to chemo or if the disease returns.
So here is a bit of bright news for us today. We still have a long road ahead of us and many, many trips to this hospital for chemo, scans, and who knows what else, but we are so glad to have this good news today, and we are very happy about having such great odds. I don't know if I mentioned that I am going to be learning how to give her shots and change her central line dressing. I am a little bit nervous about all of that. I am also not looking forward to flu season because her immune system is now totally gone, so she won't be making many trips out, and hopefully she will like wearing a mask. We will also have to get her some cute beanies for winter because I imagine her hair will start falling out soon. Anyway, I am babbling. Thank you everyone for your concern for our family, your love, and your prayers!
I took a couple of pictures today, so make sure to look for those.
9/12/2011 - Happy in the ICS unit
9/12/2011 - A new favorite rattle
9/12/2011 - A view of some of the room - not exactly cozy, but at least she has the rattle.
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