10.26.2009

Hospital: Day #6

10/26 830am (from Matt)

Mollie had a very difficult night last night. Her fever ran all the way up to 39.4 C just after midnight, and it took three doses of tylenol, at 1230, 3 and 430 am to turn it back down to 37.9 C, as of 6am. At 8am it was still down, to 37.4 C. This is the only small bit of good news at this point.

Dr V (the new attending) came by earlier and Mollie's counts are slightly down from yesterday. She still has very low white counts, no measurable ANC, and is neutropenic. Several versions of plan B are under consideration right now.

They may begin treating Mollie for a fungal infection. We have been told that this involves some significant side effects, but have not gotten into specifics although Sarah researched it and has a good idea. Mollie may get neupogen shots to boost her white cell count - she has had these before and responded well (aside from loathing the shot itself). She may get a CT scan to further evaluate her sinuses and clarify the possibility of whether this is a sinusitis of some sort. She may be tested for the flu, although this would require that she be moved outside the forced airflow isolation ward and therefore isnt likely due to her neutropenic condition. She may receive an IgG infusion as we mentioned before. She may receive a blood transfusion to boost her red cell count. They may for now simply continue status quo (clindamycin and cefepime antibiotics), in the hopes that whatever this is resolves that way. We will know soon enough what seems to be the best course to follow and get busy following it.

For her part, Mollie is fighting a courageous battle against something that is nasty as can be. Whatever this infection is has withstood 6 days and counting of powerful antibiotics. Mollie understands very well what is going on and is willing to do whatever is asked of her. She takes medicine without protest, allows the doctors and nurses to examine her, take her blood pressure and temp etc, and her only complaint has been that she is bored (surprise). We are confident that despite the lack of positive news today that Mollie has the will and determination to beat whatever is attacking her and get the heck out of here. It just may take some time.

Update @ 10 am (Sarah)

Mollie is in good spirits this morning. She is painting wooden figurines from Michelle and wearing a locket with a photo of Lucy in it. We are hoping they will let us bring Lucy in here for a visit- it would be nice to have our whole family in the same room for a few minutes! Mollie's diet has been pretty good- this morning she ate pancakes, 2 cups of OJ, cereal with milk, and half a bagel with cream cheese! She's not having any symptoms other than the fevers and cough.

The plan, according to Dr. V is to give the neupogen (GCSF) shots, starting today, to help get those counts up. He has reassured us that it is not unusual for children run unexplained high fevers when their counts stay low. The cultures (bacterial and fungal) continue to be negative and he thinks the cough is due to post-nasal drip. So, it's more of the watchful waiting.

Matt and I are both scared and I think last night was a very low point for both of us. We are very thankful to Michelle and Marv for helping out so much with Lucy and we're glad that Matt's dad is coming sometime today to help out. Mollie beat both of us at a game of Trouble before bed so we're looking for a rematch sometime today!

Meant to post photos of the haunted house, but I forgot my camera!

2 PM (Sarah)

Fever spiked this morning around 10:30- she's still febrile and Tylenol is not helping much. She took her neupogen shot like a pro though. Dr. V says that once the ANC gets up around 400-500 that we should see a dramatic improvement. Despite the fever, we have been doing lots of painting and she beat me at Crazy 8s and Go Fish. Delete

18 comments:

  1. My thoughts are with all of you. I will send some things for her to do - if she feels up to it. Maybe it will help pass the time!
    Mollie - we miss you and all wish you well SOON!
    Mrs. Swenson

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  2. Hey guys, What would boosting her red cell count do? Anything we can do to ease her boredom-- games/Web sites/books? I have a Cmas present I can send down early with Grandma if you think it would help! Sounds like she has some creative projects going but those may get old if she's there much longer.
    Love,
    Auntie Liv

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  3. yes, what can we do? i can mail anything anywhere you like. i wish i could take lucy for a spell.
    mollie is one determined little person and i believe she will kick this. positive thinking really can do a lot.
    sarah, call if you need to talk.
    i wish i knew what to say or do to help. still thinking of you.
    nicola

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  4. Big hugs guys, a crafty/colouring/halloween parcel is in the mail this morning, though i'm hoping by the time it gets there she'll be out and at home! It's a super good sign the cultures are coming back negative, really hoping it "runs its course" and the shots boost her up enough to get that temp down for good!

    If you want to post me Lucy I would love to have the chubby cherub for a while....:0) I'm glad you're getting help with her and Matts Dad is coming down too, anything please just ask.

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  5. Some people say laughter is the best medicine try this site, http://kids.yahoo.com/jokes - I hope it helps. Today I am also sending really cool thoughts Mollie's way- hopefully they will help reduce the fevers.

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  6. We've been in a similar position, stuck in the hospital with low counts, and an unexplained fever. IT SUCKS!! My Isabel had the GCSF shots with good results (other than hating the actual shot, of course).

    Last time we were inpatient for 11 days before we figured out the reason for the fever (slow growing staph infection in her port). Living in the hospital is the worst.

    Wishing like mad Mollies ANC rises and the fever goes away. I think of you guys every day. I promise you'll get through this and get home sometime soon.

    Leukemia treatment is hard core and you're in the midst of the battle. Just stay strong and hold on. You guys are doing great. My thoughts are with you. XXOO.

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  7. I'm joining the hugs, love and prayers group and wishing I could bring over some frozen meals and 'borrow' Lucy. Know that we are thinking of you.

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  8. Dear Matt, Sarah, Mollie, and Lucy,

    I include you all in my prayers every day. I hope Mollie has reached the turning point on those fevers and numbers, and that she will soon feel a lot better and get to go home. If they run out of fresh ideas to keep her entertained, maybe Grandpa will tell Mollie some stories about when he was a youngster and going fishing with his Uncle Ernest (my dad).

    Love and hugs to you all,

    Theresa Dove (Matt's second cousin)

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  9. Liz (Nicola's friend)October 26, 2009 at 4:08 PM

    I'm hoping for your family to be home again soon. You are all an inspiration.

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  10. Dear Mollie,
    We are praying for you and your mom and dad and sister. I have asked all our church intercessors to pray for you so alot of folks are praying for you right now!
    Jonathan says hi.
    love to you all,
    Miss Maura

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  11. We wish we could be there, but know that our thoughts and prayers are with you. I am sending some mail tomorrow, but let me know if there is anything else I can do.
    Lots of Love,
    Katie

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  12. 10/27 130am

    The last 10 hours or so have been pretty hairy. To pick up where Sarah left off, Mollie again spiked a fever Monday afternoon which ran to 39.8 C. The docs switched to Motrin, despite some reservations about her low red counts. This provided about a 3 hour respite until 745pm when her temp started to climb again. Shortly after this, Mollie complained of stomach pain, and the team ordered an urgent stomach x-ray around 8:30. She described the pain as being in the vicinity of her appendix, and this led to a new round of worrying and speculating. The x-ray didnt turn up anything serious though, luckily. Mollie is a little backed up however, and has been prescribed Miralax, which I bribed her into taking a few minutes ago.

    While all this was going on, Mollie ran up her highest fever yet, which hit 40.3 C at 10:30pm. This is 104.5 F, and got us asking some very pointed questions about how high is too high. They increased her Motrin dosage and now have that staggered with the Tylenol so that she is receiving something every 2 hours. We began laying cold compresses on her wrists, neck, feet and forehead, which I will continue until morning.

    As I sit here, I am reminded of a line from one of my favorite movies, "Hoosiers". The assistant coach tells Gene Hackman, "Im trying real hard to believe you know what you are doing". This applies to our situation now in a lot of ways. That movie had a happy ending of course, but not without a rocky road to travel.

    Her temp is down to 38.1 C as of 10 minutes ago. Best case scenario would obviously be a return to normal range, but I think Sarah and I would be happy to stay around 38 and to see some improvement in the counts in a few hours.

    Thanks to all of you reading, and supporting us for the past few days. This has been an extremely trying time for all of us and we really do appreciate it.

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  13. Thanks for the 1:30 a.m. update, Matt. I've been thinking and praying for Mollie and you most of the night. Given Mollie's strength, I'm confident that the neupogen will kick-start the release of neutrophils in record time and the high fevers will diminish. Please tell Mollie that I'm looking forward to one of her special tea parties when I get there tomorrow.
    XOXO,
    Grandma Janet

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  14. Tell Mollie I am thinking about her. I think she is a really brave, strong little girl! My prayers are for all of you to keep strong and supporting each other.
    Mrs. Swenson
    PS DO NOT make her do any of that work I sent unless she really feels like it! I was sending things to help relieve boredom.

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  15. 10/27 8am

    Quick update - in terms of Mollie's fever, things took a dramatic turn for the better around 2:30am. Her fever broke sharply and dropped all the way to 36.4 C, well within the normal range. It is still in the 35 to 36 range now - which is surprisingly low, of all things. Obviously we hope that continues!!

    Mollie's WBC is 0.6 this morning, an improvement and the highest it has been since she was admitted. This could be due to the neupogen, although the Drs commented that it probably was too soon after the shot for this improvement to have occurred. They had not calculated the differential yet so we dont yet know the ANC. She is sleeping soundly now, much better than the fitful sleep of when she was feverish.

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  16. Matt and Sarah, my thoughts and prayers are with you. Please do not hesitate to call at all if you need anything.

    Michelle

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  17. Wow, what a rollercoaster night for both of you. You and Sarah are such pillars of strength. Glad to hear the fever finally came down...and still praying for those wbc to multiply!! Also, care package is on the way.

    love,
    Lauren

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  18. What a night! I hope it's the last night like that and her temp stays down! Thinking of you guys - get better soon Mollie!

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