Mollie's clinic appointment went pretty well, but there's not much of an update since I don't have her counts yet (the lab tech is out sick so everything is being processed by the main lab and takes forever). Her lungs sound good and she got the green light to go to school on Monday! I'm a little nervous about sending her back out into the world of germs, but I'm always going to feel that way. They will keep her on 50% chemo dose for two weeks and then gradually step it back up to 100% if she can tolerate it. She's scheduled for IV chemo (vincristine) on Tuesday.
Her hair seems to have stopped falling out. It is very thin right now, but there's enough that she doesn't feel too different. Hopefully this next dose of vincristine will be gentle on the hair follicles.
Good news all around this morning.
Update: I don't have the exact numbers (phone call while driving), but Mollie's WBC is 4.3 so her ANC is probably up around 2000; Hgb is ~11 and platelets are >200,000. So, good news on the counts- her bone marrow seems to be back to work.
11.06.2009
11.05.2009
The weather was lovely today, so I ignored the huge mess that is our house and the 750 things on my to do list that has been growing for several weeks and took the girls to the park. We'll still be eating a delicious dinner tonight thanks to the families of Mollie's classmates and Vera.
Tomorrow, it's back to MCG for Mollie's clinic visit. I'm hoping for a short visit (< 2 hours), but I do have a lot of questions...
11.04.2009
We're free today
Mollie had a great afternoon yesterday. She played with Lucy outside and then helped my mom bake cupcakes for my dad's birthday. We celebrated both Mollie's discharge and my dad's birthday by going out to dinner. What better time to go out than when Mollie's ANC is really high? She ate and played some more and didn't want to go to bed.
This morning she had a bubble bath! She's feeling good for the most part. She is having some bone pain from the neupogen shots and is very concerned about her hair. I'm not sure how to handle this one. It's such an outward sign of her cancer and she just wants to be treated like a normal kid. Guess we'll just take it one day at a time. She will definitely be out of school the rest of this week and we haven't yet figured out what the long term plan is for school. First, things first.
Matt and I got to decompress a little last night. Tears of joy and thankfulness, fear and loss. Today is surreal- we have been in crisis mode for two weeks, and then all of the sudden we are home, Matt is back at work, Mollie and Lucy are playing and arguing, there's housework to be done...
This morning she had a bubble bath! She's feeling good for the most part. She is having some bone pain from the neupogen shots and is very concerned about her hair. I'm not sure how to handle this one. It's such an outward sign of her cancer and she just wants to be treated like a normal kid. Guess we'll just take it one day at a time. She will definitely be out of school the rest of this week and we haven't yet figured out what the long term plan is for school. First, things first.
Matt and I got to decompress a little last night. Tears of joy and thankfulness, fear and loss. Today is surreal- we have been in crisis mode for two weeks, and then all of the sudden we are home, Matt is back at work, Mollie and Lucy are playing and arguing, there's housework to be done...
11.03.2009
Mollie Is Home!!
Yay! Yay! Yay!
Thank you to everyone for the moral support, gifts, notes, etc. We can feel the good thoughts and it really helped to sustain all of us. We just got a big package from Mollie's school with some delicious bread and gift certificates for food. That will be a huge help this week as we all recover from this long hospital stay.
Mollie will be seen in clinic on Friday for counts/follow-up and she is going to resume chemo at a 50% dose today. If all goes well Friday, she will be in clinic next week for her regularly scheduled monthly IV vincristine and steroids. It would have been nice to get a little break, but we know how important it is for her to get her chemo regularly.
This post is unfinished but Mollie wants me to "do something" with her.... back for more later.
Thank you to everyone for the moral support, gifts, notes, etc. We can feel the good thoughts and it really helped to sustain all of us. We just got a big package from Mollie's school with some delicious bread and gift certificates for food. That will be a huge help this week as we all recover from this long hospital stay.
Mollie will be seen in clinic on Friday for counts/follow-up and she is going to resume chemo at a 50% dose today. If all goes well Friday, she will be in clinic next week for her regularly scheduled monthly IV vincristine and steroids. It would have been nice to get a little break, but we know how important it is for her to get her chemo regularly.
This post is unfinished but Mollie wants me to "do something" with her.... back for more later.
11.02.2009
Hospital: Day #13
Pushing two weeks inpatient! Mollie is doing very well and is very, very tired of being here. Her WBC is 16,900. Her ANC is definitely over 5000 so they are stopping the neupogen shots! She is very lethargic, somewhat grouchy, and not eating much. She's also complaining of stomach pain. Matt and I think most of this is due to cabin fever and side effects of the drugs she's still on. It seems like there is little benefit to keeping her on all the antibiotics/antifungal so we will bring this up during rounds this am.
At the moment, she is working on school work with Ms. Pam, the hospital school teacher. She's in a good mood and for the moment has forgotten that her tummy hurts.
The nurse just came in from rounds and said they are going to stop all the IV meds: the Meropenem, caspofungin, and vancomycin. She got her last dose of Tamiflu on Sat. and will finish up the Zithromax today. They may keep her on a once per day oral antibiotic (like augmentin) and also give her some prevacid or zantac to help with the stomach issues. And then keep her 24 hours for observation. All of this still needs to be confirmed (I haven't yet seen the attending for this week, Dr. McD) and I also want to ask about the breathing treatments.
3:30 PM Update: Mollie got a hep-lock around lunchtime and she's been walking around the hospital ever since. So, so glad to finally get out of the room! All of her IV meds are stopped and she just had her augmentin (oral). She'll get her final dose of Zithromax shortly and she will continue the every 4 hour breathing treatments. She's been crafting, doing art, playing with some toys, and still not eating.
At the moment, she is working on school work with Ms. Pam, the hospital school teacher. She's in a good mood and for the moment has forgotten that her tummy hurts.
The nurse just came in from rounds and said they are going to stop all the IV meds: the Meropenem, caspofungin, and vancomycin. She got her last dose of Tamiflu on Sat. and will finish up the Zithromax today. They may keep her on a once per day oral antibiotic (like augmentin) and also give her some prevacid or zantac to help with the stomach issues. And then keep her 24 hours for observation. All of this still needs to be confirmed (I haven't yet seen the attending for this week, Dr. McD) and I also want to ask about the breathing treatments.
3:30 PM Update: Mollie got a hep-lock around lunchtime and she's been walking around the hospital ever since. So, so glad to finally get out of the room! All of her IV meds are stopped and she just had her augmentin (oral). She'll get her final dose of Zithromax shortly and she will continue the every 4 hour breathing treatments. She's been crafting, doing art, playing with some toys, and still not eating.
11.01.2009
Hospital: Day #12
Yesterday was tough emotionally because, although we are very thankful for this hospital, we can't wait to leave. Mollie BORED. It's like being in jail- she can't leave the room and her friends can't come visit. Trying to keep her spirits up is the hardest thing right now. It bites that we missed Halloween. We haven't been together as a family in almost two weeks. Lucy doesn't know what is going on and really misses Mollie.
To add insult to injury, her hair is starting to fall out in big clumps- probably from her last treatment with vincristine. It is not unusual for kids to have some hair loss in LTM, particularly after a year in treatment. Most of the time it is just a general thinning, but occasionally they go totally bald. With the amount of hair that Mollie is losing, I'm worried it's the latter, but I know we can deal with it.
The important thing is that she's still kickin' butt! Her WBC is 6300 today (ANC not in, but probably around 3000) and her lungs are starting to sound better. No fevers in 2 days. She's very weak from all the medications and just being in here so long, and her appetite is totally gone (although she's been munching on some Halloween candy). But, we just found out she is no longer on isolation! She still can't have children under 18 as visitors (hospital-wide policy), but she can finally leave the room!
9 PM Update: Mollie had a good day today- she had a visit from her teacher, Mrs. S, and then went out to the lobby for a visit with Lucy! It was very sweet to see them together after so long apart. They were blowing bubbles and Mollie even attempted to pull Lucy in the wagon while still attached to her IV. Tonight, Mollie wound up with abdominal pain and GI issues. When I left the hospital, she was sleeping but still complaining of pain. Given all the medications and the lack of exercise and poor diet, I'm not surprised she's having digestive tract problems. I think they will back off of some of the medications tomorrow. A good night's sleep would really do her (and all of us) some good, but with breathing treatments every four hours round the clock and continuous IV fluids (and trips to the bathroom), it won't happen. I'm hoping that tonight is relatively restful for Matt and Mollie.
To add insult to injury, her hair is starting to fall out in big clumps- probably from her last treatment with vincristine. It is not unusual for kids to have some hair loss in LTM, particularly after a year in treatment. Most of the time it is just a general thinning, but occasionally they go totally bald. With the amount of hair that Mollie is losing, I'm worried it's the latter, but I know we can deal with it.
The important thing is that she's still kickin' butt! Her WBC is 6300 today (ANC not in, but probably around 3000) and her lungs are starting to sound better. No fevers in 2 days. She's very weak from all the medications and just being in here so long, and her appetite is totally gone (although she's been munching on some Halloween candy). But, we just found out she is no longer on isolation! She still can't have children under 18 as visitors (hospital-wide policy), but she can finally leave the room!
9 PM Update: Mollie had a good day today- she had a visit from her teacher, Mrs. S, and then went out to the lobby for a visit with Lucy! It was very sweet to see them together after so long apart. They were blowing bubbles and Mollie even attempted to pull Lucy in the wagon while still attached to her IV. Tonight, Mollie wound up with abdominal pain and GI issues. When I left the hospital, she was sleeping but still complaining of pain. Given all the medications and the lack of exercise and poor diet, I'm not surprised she's having digestive tract problems. I think they will back off of some of the medications tomorrow. A good night's sleep would really do her (and all of us) some good, but with breathing treatments every four hours round the clock and continuous IV fluids (and trips to the bathroom), it won't happen. I'm hoping that tonight is relatively restful for Matt and Mollie.
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