from HOME!

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... 


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.


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!

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!! 


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).

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).


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.


From the hospital, day 2

We are still here.  Mollie has been spiking fevers on and off since yesterday and has developed a rash over her face and trunk.  The oncologist (Dr. M) thinks it is viral, but Mollie is getting broad spectrum antibiotic coverage just in case.  There isn't much else to report; her ANC is still very, very low and she's feeling pretty lousy overall.   She is tired and bored; they are testing her for a virus so she has to be in 'isolation' until the tests come back.  We completely understand (they don't want to expose all the other immune compromised patients on the floor to what she has), but the contact precautions are annoying.  No playroom.  Gowns and masks for staff coming into the room.

The hospital here is similar to MCG.  The staff are friendly and responsive.  The hem/onc unit has been recently renovated so they have some cool state of the art equipment in the patient rooms, like flat screen TVs and barcode readers for the hospital bracelets. Funny how the little annoying things, like the IV beeping incessantly and the slow pharmacy, are the same.

I'm off to get a little sleep, hoping that Mollie's bone marrow cranks out a bunch of baby neutrophils tonight.


F & N

Fever and neutropenia, that is.  They should call it effin' N.

Mollie is in the hospital.  She has a very low ANC (~30; remember, normal is >1500) and a very high fever (103).  We consulted with the oncologist on call in Augusta and he said to take her to the children's hospital in Charlotte.  I had hoped it would be an in and out trip, but that wasn't in the cards.  Levine Children's Hospital is every bit as good as MCG, but we just are not familiar with their staff and protocols.  The port access did not go well (it never does in the ER) and she had to get stuck twice.  But child life (Shannon) was awesome!  She brought Mollie a movie, stuffed animal, and blanket and got her talking about her new Scooby Doo silly bands.  I am so, so proud of Mollie.  Scared as she was, she didn't shed a tear. My heart sunk when I heard that her white blood cell count was only 0.5 because I knew that earned her an admission.

She is feeling pretty low right now and my heart is breaking for her.  She will miss her second week at her new school. And she was designated the star student for this week!  She had her poster and show and tell all ready to go.  I will head back to the hospital in the morning with a bunch of stuff to keep her busy.  Today she was interested in doing math in the ER!!

I am feeling insecure because these aren't the doctors I know and they don't know Mollie.  However, deep down I don't care who is treating her; I just want her fever to come down and ANC to go up, up, up!!