Yesterday, the oncologist said Mollie's bone marrow looked like it was about to send out a bunch of neutrophils and he was right on. Yesterday's ANC = 0; today's ANC = 1000! She has not had a fever for more than 24 hours, so they discharged her.
We could not be happier. She still has a rash and swollen gums, but we are to follow up with clinic next week and keep checking for fever @ home. She is so happy to be home and we feel like a family again!
In other news, Liam got his first tooth last night, our friends Lauren and Justin welcomed their new son to the world yesterday morning, the weather here is gorgeous, and it is a long weekend. Mollie picked a good day to leave the hospital!
More later...
9.04.2010
9.03.2010
from the hospital, day 6
I won't keep you waiting- no evidence of leukemia in Mollie's bone marrow or csf specimens!
She had her procedures this afternoon- a lumbar puncture, bone marrow aspirate, skin biopsy (of the rash), nasal swab, and got her port access needle replaced. She got some morphine for the pain associated with the bma and biopsy, so hopefully she will remain comfortable tonight.
We still don't know what is making her sick- there is increasing evidence that it is some type of virus. Matt and I are breathing a huge sigh of relief, so thankful that there is no recurrence of the leukemia. I hope we never have to go through that again! No family should have to. The fear, anxiety, and worry is just awful.
Settling in for another night in patient (well, Matt and Mollie will be staying here). I did not think that this would be my post for Mollie's last day of treatment... but I am so, so glad that the news today is positive.
She had her procedures this afternoon- a lumbar puncture, bone marrow aspirate, skin biopsy (of the rash), nasal swab, and got her port access needle replaced. She got some morphine for the pain associated with the bma and biopsy, so hopefully she will remain comfortable tonight.
We still don't know what is making her sick- there is increasing evidence that it is some type of virus. Matt and I are breathing a huge sigh of relief, so thankful that there is no recurrence of the leukemia. I hope we never have to go through that again! No family should have to. The fear, anxiety, and worry is just awful.
Settling in for another night in patient (well, Matt and Mollie will be staying here). I did not think that this would be my post for Mollie's last day of treatment... but I am so, so glad that the news today is positive.
9.02.2010
day 5 update
I'm headed to bed soon so I can meet my parents at the airport early tomorrow morning but I wanted to quickly update.
Mollie spiked a fever around mid-day and was feeling bad while the fever was up, but once it came down (with tylenol) she perked right up. We did lots of crafts, painted her nails, watched Tinkerbell, washed her hair (the part of it that she would let me), and kept our minds off the hospital surroundings. Mollie, Lucy, and I did the white blood cell ANC cheer before I headed for home tonight and apparently Mollie is drawing pictures of white blood cells right now. We believe that attitude is very important and we are all visualizing the white blood cell factory in Mollie's marrow.
I realized I got quite a few phone calls from friends and family today and I apologize for not answering: the reception is really bad in that room so I will try to get back to you in the next few days.
Please keep praying for a boost in Mollie's ANC!
Mollie spiked a fever around mid-day and was feeling bad while the fever was up, but once it came down (with tylenol) she perked right up. We did lots of crafts, painted her nails, watched Tinkerbell, washed her hair (the part of it that she would let me), and kept our minds off the hospital surroundings. Mollie, Lucy, and I did the white blood cell ANC cheer before I headed for home tonight and apparently Mollie is drawing pictures of white blood cells right now. We believe that attitude is very important and we are all visualizing the white blood cell factory in Mollie's marrow.
I realized I got quite a few phone calls from friends and family today and I apologize for not answering: the reception is really bad in that room so I will try to get back to you in the next few days.
Please keep praying for a boost in Mollie's ANC!
from the hospital, day 5
Well, I am more optimistic today. I can't say why because nothing really has changed, but I just feel better about everything. We got Mollie's counts- her white blood cells (and neutrophils) are about the same as yesterday- low. Her platelet count has come up a bit and hemoglobin is holding.
We had a consult with infectious diseases a little while ago. They agree that this is probably viral, but are adding an extra antibiotic to cover the (extremely unlikely) possibility of rocky mountain spotted fever (!)
I think her rash looks a little better. Maybe it's just optimism, but it doesn't look as red to me. Mollie is in a little better mood and isn't tethered to the IV constantly so she's getting up, walking around, and just finding different places to sit in this little hospital room. Sitting in bed for days on end is not good for anybody!
I brought some more beads, crafts, knitting, and Tinkerbell the movie and we plan to spend the day crafting and not thinking about cancer.
I will keep updating here as we know more; we are still on for a spinal/bma tomorrow afternoon unless counts come up in the morning. They are running some tests to check for different viruses and we should get those results back today or tomorrow. If they identify what this is, they will cancel the spinal and wait until she is better to do her off treatment assessment. I'm praying so hard for those counts to come up!!
We had a consult with infectious diseases a little while ago. They agree that this is probably viral, but are adding an extra antibiotic to cover the (extremely unlikely) possibility of rocky mountain spotted fever (!)
I think her rash looks a little better. Maybe it's just optimism, but it doesn't look as red to me. Mollie is in a little better mood and isn't tethered to the IV constantly so she's getting up, walking around, and just finding different places to sit in this little hospital room. Sitting in bed for days on end is not good for anybody!
I brought some more beads, crafts, knitting, and Tinkerbell the movie and we plan to spend the day crafting and not thinking about cancer.
I will keep updating here as we know more; we are still on for a spinal/bma tomorrow afternoon unless counts come up in the morning. They are running some tests to check for different viruses and we should get those results back today or tomorrow. If they identify what this is, they will cancel the spinal and wait until she is better to do her off treatment assessment. I'm praying so hard for those counts to come up!!
9.01.2010
day 4 update: tired and terrified
After I posted today, I got Mollie ready for bed and helped her brush her teeth. Her gums were bleeding a little, probably because her platelet counts are low and she hasn't brushed for a few days. She just lost it, and so did I. She said she is so tired of all the "ugly" things (bleeding gums, rash, etc.) that keep happening to her in the hospital. It is beyond hard to see your child suffering and to be helpless to stop it. I can't stand it!
Then, to top it all off, she spiked a fever of 102.6 just as I was leaving. Honestly, I am terrified. I'm taking a deep breath and I will try to get a good night's sleep. We could use some prayers, good luck, and patience. Tomorrow is a new day (hopefully one filled with a positive ANC).
Then, to top it all off, she spiked a fever of 102.6 just as I was leaving. Honestly, I am terrified. I'm taking a deep breath and I will try to get a good night's sleep. We could use some prayers, good luck, and patience. Tomorrow is a new day (hopefully one filled with a positive ANC).
From the hospital, day 4
The only good news is that her white blood cells (overall) and her platelets are up slightly. It looks like we are here for a long stay.
Mollie has not had a fever since yesterday, but she still has the itchy rash. The lab lost Mollie's blood sample this morning so we didn't get her counts until just now: ANC is 0. She has a spinal tap and bone marrow aspirate scheduled for Friday if her counts don't show any sign of recovery by then. The doc said he expects to see counts start to recover after two weeks of being off chemo; if they don't, he likes to do an LP & bma to rule out a recurrence of the leukemia. We NEED those counts to come up.
I don't think she is relapsing because her counts always take a long time to recover when they bottom out, but I admit I am worried. I am trying not to dwell on it because it is what it is- worrying won't help.
Mollie was in pretty good spirits today- she is into beading (it keeps her hands busy and not scratching her rash) and crafts as usual. Today she painted a birdhouse and made some little fuzzy creatures from a kit I had. And she got a good laugh when we made Liam sit on a whoopie cushion!!
Getting her to eat is a struggle and I still haven't succeeded in bathing her. I'm feeling down; this is not at all what I had planned for this week. We were supposed to go to Augusta for Mollie's blood draw and then celebrate the end of treatment by going on a camping trip this weekend. The only thing that matters, though, is that Mollie beats this. So we press on and hope that she has a relaxing night while her bone marrow cranks out neutrophils. I brought a lavender sachet for her pillow to give her sweet dreams (thanks for the tip, Michelle).
Mollie has not had a fever since yesterday, but she still has the itchy rash. The lab lost Mollie's blood sample this morning so we didn't get her counts until just now: ANC is 0. She has a spinal tap and bone marrow aspirate scheduled for Friday if her counts don't show any sign of recovery by then. The doc said he expects to see counts start to recover after two weeks of being off chemo; if they don't, he likes to do an LP & bma to rule out a recurrence of the leukemia. We NEED those counts to come up.
I don't think she is relapsing because her counts always take a long time to recover when they bottom out, but I admit I am worried. I am trying not to dwell on it because it is what it is- worrying won't help.
Mollie was in pretty good spirits today- she is into beading (it keeps her hands busy and not scratching her rash) and crafts as usual. Today she painted a birdhouse and made some little fuzzy creatures from a kit I had. And she got a good laugh when we made Liam sit on a whoopie cushion!!
Getting her to eat is a struggle and I still haven't succeeded in bathing her. I'm feeling down; this is not at all what I had planned for this week. We were supposed to go to Augusta for Mollie's blood draw and then celebrate the end of treatment by going on a camping trip this weekend. The only thing that matters, though, is that Mollie beats this. So we press on and hope that she has a relaxing night while her bone marrow cranks out neutrophils. I brought a lavender sachet for her pillow to give her sweet dreams (thanks for the tip, Michelle).
8.31.2010
From the hospital, day 3
Mollie seemed a little bit better today. Her counts are about the same as yesterday (negligible ANC) and her rash is still present. It seems like it is moving downward- not so bad on her face today, but worse on her tummy and back.
They decided to give her IVIG because her immunoglobulin levels are low. IVIG is pooled IgG that has been extracted from the plasma of over 1000 blood donors (and is very, very expensive- Mollie's dose probably cost more than $6000). Mollie has had it before (when she had a suspected staph infection in Dec. 2008) and she had a very severe reaction (dropping oxygen sats and increased blood pressure). It was extremely scary (as in, yelling for the doctors because Mollie was turning blue), so Matt and I were really nervous about today. But it all went well. Mollie was premedicated with Benadryl, Tylenol, and Solu-Medrol, and her nurse, Kaitlin, was very cautious with the pump rate and diligent about checking for signs of an allergic reaction. She developed a slight fever during the second step, but it resolved quickly without any additional meds. She remained afebrile all day and the steroid (Solu-Medrol) seemed to help with some of the itching and redness of the rash.
Mollie has little bouts of feeling well, but the meds and just being in the hospital are getting her down. She is not eating much. She reminds me of an injured animal because she is maintaining this hunched over posture to protect her port. She doesn't want anyone to come near it and she didn't relax at all today. She is doing a great job complying with the nurses (who are great) and telling us how she feels. She just wants to go home and I don't blame her!
Today we were lucky that Mollie's kindergarten teacher from last year (Mrs. S) watched Lucy all day!! Lucy really needed some one on one attention and I know she had a great time. Thank you Mrs. S! Also, Mollie's new teacher, Ms. C came to visit her in the hospital and brought a card signed by the whole class! Mollie was pretty shy when she was there, but she was looking forward to her visit all day and really enjoyed looking at the card after she left. Thanks Ms. C!
The last bit of news, and the best, is that Mollie's wish was approved. We are going to Disneyworld! You may remember she wished for a playhouse a long time ago. When we found out we were moving, we asked them to put a hold on that wish because we were not sure if that would be the best idea. After talking things over with Mollie, explaining that a fancy playhouse just won't fit in our yard right now, and looking at pictures of Orlando, Mollie got pretty excited about Disneyworld and the Give Kids the World resort. We are going in December so it will be all decorated for Christmas!
Thanks for all the comments- it helps us get through, it really does. Hearing from other cancer parents who know how much this sucks, and our other friends and family cheering us on. When I leave the hospital without Mollie and feeling down, I think about the families who just received a devastating diagnosis today, or worse yet, lost their son or daughter today, and I am thankful for what we have. Tomorrow is the first day of National Childhood Cancer Awareness Month. I urge you to spread the word and make a donation to an organization that specifically supports pediatric cancer research or treatment, such as the ones listed in the sidebar.
They decided to give her IVIG because her immunoglobulin levels are low. IVIG is pooled IgG that has been extracted from the plasma of over 1000 blood donors (and is very, very expensive- Mollie's dose probably cost more than $6000). Mollie has had it before (when she had a suspected staph infection in Dec. 2008) and she had a very severe reaction (dropping oxygen sats and increased blood pressure). It was extremely scary (as in, yelling for the doctors because Mollie was turning blue), so Matt and I were really nervous about today. But it all went well. Mollie was premedicated with Benadryl, Tylenol, and Solu-Medrol, and her nurse, Kaitlin, was very cautious with the pump rate and diligent about checking for signs of an allergic reaction. She developed a slight fever during the second step, but it resolved quickly without any additional meds. She remained afebrile all day and the steroid (Solu-Medrol) seemed to help with some of the itching and redness of the rash.
Mollie has little bouts of feeling well, but the meds and just being in the hospital are getting her down. She is not eating much. She reminds me of an injured animal because she is maintaining this hunched over posture to protect her port. She doesn't want anyone to come near it and she didn't relax at all today. She is doing a great job complying with the nurses (who are great) and telling us how she feels. She just wants to go home and I don't blame her!
Today we were lucky that Mollie's kindergarten teacher from last year (Mrs. S) watched Lucy all day!! Lucy really needed some one on one attention and I know she had a great time. Thank you Mrs. S! Also, Mollie's new teacher, Ms. C came to visit her in the hospital and brought a card signed by the whole class! Mollie was pretty shy when she was there, but she was looking forward to her visit all day and really enjoyed looking at the card after she left. Thanks Ms. C!
The last bit of news, and the best, is that Mollie's wish was approved. We are going to Disneyworld! You may remember she wished for a playhouse a long time ago. When we found out we were moving, we asked them to put a hold on that wish because we were not sure if that would be the best idea. After talking things over with Mollie, explaining that a fancy playhouse just won't fit in our yard right now, and looking at pictures of Orlando, Mollie got pretty excited about Disneyworld and the Give Kids the World resort. We are going in December so it will be all decorated for Christmas!
Thanks for all the comments- it helps us get through, it really does. Hearing from other cancer parents who know how much this sucks, and our other friends and family cheering us on. When I leave the hospital without Mollie and feeling down, I think about the families who just received a devastating diagnosis today, or worse yet, lost their son or daughter today, and I am thankful for what we have. Tomorrow is the first day of National Childhood Cancer Awareness Month. I urge you to spread the word and make a donation to an organization that specifically supports pediatric cancer research or treatment, such as the ones listed in the sidebar.
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