Lucy's Journey: 5/19 - 10/24/14

May 20, 2014
Just a brief update for our family and friends. We brought Lucy into Phoenix Children's Hospital yesterday morning to have an IV and blood work done to figure out if she had anemia. God must recognize that she is an extraordinarily strong girl because she was instead diagnosed with leukemia. She is in surgery as I type this having her bone marrow extracted for testing, as well as a spinal tap to test her fluid. We have already heard from the surgeon placing her port that it was successful. We have created a group for anyone who would like to join to hear updates, I promise I will do my best to update along her journey.---
We always wondered why Lucy was so strong willed, so stubborn. Now we know why. God has been preparing her for a fight.

Procedures for final prognosis are done. Gloves are on and up, Lucy gonna knock leuck out.

--- Lucy is officially back in her ICU room. Now more waiting on test results. It will take 1 to 2 weeks to find out exactly what type we are dealing with.
--- *IMPORTANT UPDATE*
We have yet to tell the other kiddos about Lucy. They know she is sick and in the hospital but are unaware of the leukemia. Please DO NOT tell the kids anything. PCH has counselors that specialize in telling siblings about things like this. They will be able to talk to counselors on Thursday when they come see Lucy.
Thank you all for all your kind thoughts, words, and prayers. Lucy appreciates all the love.
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Lucy perked up for about an hour after she was transferred to the oncology floor. Makes mom and dad happy to see her so happy in the midst of such confusion.

The prologue is over. Chemo starts tomorrow and the journey truly begins...

May 21, 2014
She was so excited when "baby Isaac" arrived this morning! We had to quickly get pajamas on because he was grabbing her port lines and trying to eat them, silly little man!
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Lucy's spinal tap came back clear, praise God there was no leukemia in her spinal fluid. Thankful for the little victories!


May 22, 2014
Catching up on all the wonderful videos and pics with cousin Grace.
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Up and walking without pain for the first time since Monday. Very Ariel.... gaining her "land legs"
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Excited to see Lucy!!
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Waiting for Lucy to get back
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She loved her roses.
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Sisterly love and quality time.
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They were in ahh of the view from the room. According to Elli, she can see all of Arizona! Lol
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Chillin after time with her siblings.

May 23, 2014
Sweet girl wanted me to take her picture with her panda.
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Lucy's blood pressure has been elevated since yesterday. Hoping it is nothing "major", and will just need to be monitored while she is on the steroid.
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The collection of stuffed animals she has received. ♡♡
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Lucy has spiked a fever this evening. They have started her back up on the antibiotics that they had stopped this AM. She literally has no immune system, so we are fully reliant on the antibiotics to fight off whatever caused the fever. Prayers appreciated.


May 24, 2014
Lucy is receiving a platlet transfusion since the fever last night knocked her already low number by almost half. Her blood pressure, while still high, is doing better this morning thankfully. Slowly learning to navigate all these numbers. Little girl went from chatting, watching Frozen and eating her yogurt to snoring in about .2 seconds!
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Shower prep
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Just ordered the same thermometer the hospital uses to have at home for Lucy. Checking fevers is a new ballgame for us, so I want to have complete confidence in the equipment used. Thanks to all the amazing women I work with on allParenting! ♡♡♡
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She is still WIDE awake! She is in such a good mood and I don't want to wake the beast by trying to force her down. This mama is scared of the 'roid rage!

May 25, 2014
The little night owl just woke up a bit ago after sleeping her afternoon away! Finally eating some food for today too, other than goldfish that is.

May 26, 2014
Someone was going stir crazy waiting to get discharged! We are now home and have our first med-dispensing under our belts. Here's praying for an uneventful couple of days before she has her first clinic visit on Wednesday.
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Getting another transfusion then we will begin the discharge process. Should be home early evening.

May 28, 2014
First clinic visit done. Her platlets were a little low, so she will receive another transfusion tomorrow during her spinal tap and bone marrow aspiration. She will also receive another dose of chemo during tomorrow's visit. Keep her in your prayers, it will be an early morning- 8 AM!

May 29, 2014
This morning's clinic visit went as well as we would expect from Goose- she avoided eye contact and refused to talk to all the nurses and Docs in hopes they would leave her alone. She woke from anesthesia quite fast, which is apparently not favored, but perked up about 20 minutes later. Thankfully, her next couple of visits should be a little easier on her. Thank you for all your supportive messages and continued prayers. ♡

May 30, 2014
Beauty and the Beast, pizza, strawberry lemonade...Lucy is having a great time while mom gets a night to herself.


May 31, 2014
Saturday morning med lineup. First of her two least favorite times of day. frown emoticon

June 1, 2014
Made it through her weekend of overwhelming med doses, thankfully for the weekdays it's a much lighter load. She is such a champ. ☆ Hopeful, once more, for an uneventful start to our week leading up to clinic on Thursday. It's back to work for Andy in the morning.

June 2, 2014
She wanted to have a picture taken in her new Strawberry Shortcake hat
smile emoticon Had a little bit of an almost-fever scare this afternoon- she kept coming in in the low-mid 99s, thankfully after a couple hours of monitoring it did not raise at all. She is now chomping away at goldfish, happy as a clam with her tablet!

June 4, 2014
Reading to Buddy

June 5, 2014
What Goose wants, Goose gets on clinic days. Ice cream for breakfast? You got it, baby girl. ♡
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I'm pretty sure the entire building now knows that Lucy is here for a visit. Round #3, here she comes...
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Long day at the clinic. She finally crashed while waiting for her blood products to arrive for transfusion. Started at 9 and still a couple hours to go.
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Finally leaving. Whew, what a day! Thank God for flexible work situations for both Andy and myself, and such a go-with-the-flow little guy.


June 6, 2014
Goose's diffuser necklace arrived today. ♡

June 7, 2014
I'm thinking we may need to change her nickname to Chipmunk for the rest of this month. Steroids are making her quite the roly poly! Sadly, she is also having a lot of joint pain and stumbling a bit more after this last round of chemo. frown emoticon

June 10, 2014
My heart hurts for my baby girl. She is simply too young to understand what is happening to her, and it pains me to see her so disappointed and confused at her body. The past few days have been very hard on her. She is struggling to walk, sit up, even just stand- she has fallen enough now that she is scared to even try half of the time. The look of complete betrayal on her face, it's too much for this mama.
frown emoticon
June 12, 2014
Round 4 is done! No need for transfusions today because her numbers looked, dare I say, great! Already loaded back up and it's only 10. smile emoticon

--- This is, hopefully, the last round of vincristine for this stage. She will have another spinal tap and bone marrow aspirate next week to check if the chemo did it's just job in eradicating the leukemia. At which point we will move into the consolidation stage, hopefully still as standard risk (dependent on the marrow results).
June 16, 2014
At the clinic this morning to try and figure out what's up with these crazy outtanowhere bruises. frown emoticon
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Checked back in at her old stompin' grounds.

June 19, 2014
Her current fave: Ralph (Kit Kats too, but she scarfed that sucker down!)
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A hospital update: The doctors all seem to concur that the "bruises" are ecthyma but we are still waiting on biopsy reports to determine what the infection that caused it is. However, we began noticing yesterday that she was swelling- mainly in her face, belly and upper legs. Today it was spreading and she was getting significantly heavier. {Turns out that she has put on over 10 lbs in a week!} We brought it to the Dr's attention and she is now receiving a "water pill" as well as blood and fluids to correct that. Praying we see a reduction in swelling so that her heartrate and breathing can normalize and she can receive her lumbar puncture and bone marrow aspirate as planned tomorrow. This has been quite the bumpy detour on this journey, and I am really getting good practice at speaking up and being persistent with even the pettiest of concerns.---
Another update: Well, this morning I noticed what looked like a sore on the roof of Lucy's mouth. The doctor believed that this may have been the starting point so they decided to do a CT scan after her bone marrow aspirate and spinal tap. The good news is her bone marrow looked good, and her spinal fluid was again clear. They have to send her marrow to Seattle to be better looked at before they can officially determine that she is in remission. Fingers crossed we have conquered the leukemia cells for now. The long-awaited news is that they finally have an idea of what is causing the infection. It looks to be a fungal infection which unfortunately can be a bit trickier to treat (as far as side effects from the antibiotics) and requires a longer stay. The CT scan did show that is was not in the bone though. Small victories, I suppose. Thank you for continued prayers- more specifically that we can determine the exact fungus and target it quickly and effectively. We will be here for at least a few more days, possibly another week. unsure emoticon---
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And on a happier note some midnight snacking from last night. Girl was having a make out session with this slice of pizza! Should have recorded her. Lol

June 20, 2014 We've got our orange on, waiting for Goose to come out of her MRI.

July 21, 2014 Urgent prayers- Lucy has just been rushed back to surgery to remove the lesion from her mouth.
--- ENT doctor is done, he was very pleased it was restricted to her hard palate from what he could tell. Now waiting on the surgeon who decided to debris her arm lesion.
--- Lucy is out of surgery and in the ICU. She was rushed into surgery because the lesion in her mouth was threatening her airways.

Luckily, it was all in the hard pallet and stopped before the bone that separates the mouth from the sinuses. Then the 3 lesions on her body were also removed and were mostly superficial except for one.

Please continue to pray that these surgeries removed all the fungus and that the anti fungal medicine eradicates the rest. Also, for the doctors to make quick, decisive, and accurate decisions.

Thank you all and God bless.
--- I am glad Lucy is such a fighter and we have so many prayer warriors on her side.
She is back in surgery getting three more lesions removed and one cleaned up. That should hopefully send the fungal infection running into the arms of the antifungal medication.


Please pray that the anti fungal meds work quickly (which is usually slow) and take out the infection.

That is the rock. The hard place is that her leukemia is not in remission after all. Her bone marrow came back at 0.2% which puts her in the high risk category. That means more agreesive treatment which will diminish the immune system which will allow the fungal infection to spread again.

Continue to keep the faith that God has a plan. So far His plan is not congruent with our plan, but I still have faith that God is setting this one up to knock it out of the park.
--- Hard time right now. Please send love and prayers. This sweet thing needs our strength. Mommy and Daddy loving on her.

--- Lucy is strong and a fighter however right now she could use a little more. We need her body to get the strength to fight off the fungus that is taking over her little precious body.

June 22, 2014 wreck it ralph works wonders.

--- This morning she blessed the world with a bunch of smiles courtesy of Wreck It Ralph. Also, many of the new spots had disappeared or decreased in size.

Following that, she had to have portions of her right nasal passage removed since they found fungus. There is hope that this will be one of the last if not the last spot needing to be extracted.

As weird as it is to say, in comparison, today has thus far been more uplifting and inspiring.

Thank you again to all who hit there knees last night. Thanks to you, and most of all thanks to God's mercy and healing...Lucy presses on.



June 23, 2014 Lucy is touching everyone around her. Our PICU attending was in with the surgeon and he saw my Harvest shirt and asked to pray over Lucy with us. Amazing. He also was wildly unimpressed by these supposed big bad "lesion/sores" of hers- double win!
--- After 5 surgeries in less than 72 hours, this little warrior has earned herself a 3 day break! The surgeon and ENT were happy with how today's surgery and findings went and dont want to head back to the OR until Thursday. Keep those prayers/positive thoughts/happy vibes coming, they're working!
--- I think we will be adjusting our approach with the bigger kids. Lucy was much more active and interactive and just plain happy when Elli showed up today. Having Ike around helps day to day, but her older siblings should be able to play without running the risk of grabbing at a wound or yanking on her lines.


June 24, 2014 Some physical therapy fun with dad. --- First off, sorry that it has been so long without a medical update, but I am sure you are piecing together from the pictures that she is doing much better.
As I look at the Lucy's Fight image at the top of the page it come to no surprise that she is rocking it today. Late yesterday they took her in to the OR to verify that her previous debridements were a success (which they were) and they also removed any nodule that was underneath the surface to ensure they would not cause any more issues.

The fungus seems to be retreating, but we still have a long road ahead to make sure we can resume chemo. There is much concern around how to attack both at once, since she is not in remission like we had planned. That said, Saturday night we thought we were days away from loosing our little girl and now she is lesion free and laughing and playing more and more everyday.

The doctors seem surprised everyday that she is doing as well as she is. In my opinion, things will only get better because they sent off the fungus samples to an outside lab to test the fungus for best anti-fungal to treat her particular type of fungus.

She will be receiving an IVIG that bolster her immune system today and be moved be back to the Oncology floor today.

God is good and is the Great Physician. Continue to pray with the fervor and passion that you all have for throughout this weekend.

We thank you and love you all!

--- We are back on the oncology floor and things continue to look good.
The surgeon came by and said that all the wounds look healthy but one, and that may be be just the skin reacting to the sutures. He also saw two red spots that may just be pressure from her laying on that side too much or they could be starts of new lesions.
I just looked at the one spot that is easily visible while she is sleeping and I do not see the redness any more.

Lucy presses on...


June 25, 2014 It's been a fun and active morning. Bubbles and playing with Buddy, a new doll from daddy's cousins, getting us with one of her IV lines and finally PIZZA for the first time in 5 days!!

--- Ummmm...nothing really new to report...this feels AMAZING!

June 26, 2014 Just handed my baby off to surgeons, yet again. Praying for only good news in the coming hours.

--- Lucy is out of surgery and everything thus far is looking optimistic. They took biopsies of each of her wounds to see if any fungus is still present. The jury is still out on a few but all the pathology reports point to being fungus free.

Please pray through the night that the others they are still working on in the lab come back negative as well.

Thank God for good news in the midst of bad circumstances.

June 27, 2014 Lucy with her ENT. She is thrilled, as you can tell, but I know in another 10-15 years and beyond she will be happy to have photos with the doctors who have quite literally saved her life.
--- They took multiple biopsies last night during her surgery to make sure the wounds are clear of any fungus and 7 came back clear. The pathologists are working tirelessly to check the remaining 6 areas, but there were two spots the surgeons were worried about that came back clear. If that is any indicator, we are continuing on our hike out of this valley.
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Lucy's wounds on her body are clear of fungus! We are still waiting to hear on the biopsies from her mouth.

Tomorrow she will be getting a ultrasound on her kidneys because her blood pressure has been running high and they want to make sure there is no inflammation.

Feels like a game of wack-a-mole.
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Lucy and her surgeon. Words cannot express the gratitude and love we have for Dr. M. Lucy's turnaround was a group effort, but this man has led the charge (from the medical side).

June 28, 2014 Got to see sweet Lil Lucy. She was full of smiles, giggles and a few tears when daddy made her mad.

June 29, 2014 Lucy's ultrasound on her kidneys came back clear. Her blood pressure was lower the last read of last night but has still continued to run high otherwise.

Still no word on her biopsies from her mount but the ENT doctor seem to think they looked clear to the naked eye.

She played hard all yesterday and is getting some restful sleep currently.
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For the second time in her life, we have a baldie. Tried holding off until we were home to make a party of it, but it was time.
--- Silly girl! ♡
June 30, 2014 What a joy to get to stop and spend a few minutes with this sweet family and pray over them. Lucy thought it was time to go night night when Kimmy pulled the shade for the picture. Such a doll!!

July 1, 2014 Nothing new today. Still waiting on the final biopsy report from the other day.

She took a few steps today and her physical therapist is surprised at her strength.
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2 of her 11 biopsies from her mouth/nose/sinuses showed trace amounts of fungus still. All the others were negative. Waiting for her ENT to round to see what he plans to do.

And to add a little spice to our life, they have her on a patch to help with pain and blood pressure and I am fairly certain it is causing some *extreme* rage. Yay. Waiting until it has been 24 hours before deciding if it is the cause and removing it. Double yay.
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I just want to thank all of you for your help through all this. Kim and I are truly blessed to have such loving family and friends.

From powerful, miracle evoking prayer to remodeling and cleaning, to keeping us company in the hospital, to meals, and care of our other kids, you all have touched our family in an incredible way.

Thank you for being people of action and not just words.

July 3, 2014 Here's the most recent facts...

Lucy's biopsy reports came back earlier today and they were all clear but 2 that had trace amounts. She is due to go back to the OR tomorrow late afternoon or early evening for further debridement. These are not new spots just spots that appeared clean to the unaided eye.

The oncologist feel comfortable doing a "light" version of chemo this weekend that should attack the leukemia without tanking her immune system.
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I don't believe there is any reason other than they had an open spot, but she will be heading into the OR at 7am. At least she won't have to fast all morning and her surgeon will have fresh eyes.

Pray this be the last surgery, other than when she has to get her port put back in, for a very long time.
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Some pre-surgery snuggles this morning, should be a quick and easy procedure! Wearing our orange for Goose. ♡ --- Surgery went good, fast and easy. Took more biopsies so waiting for those results over the next few days.
--- Watching the dust storm roll through that my phone has been beeping about for the last hour and a half!

July 4, 2014 Sitting here playing and she had a comb, reached up to brush her hair, "Where's my hair!?" And then she moved on and decided she wanted her picture and to wave hello to all her friends! What I would give to have this girl's resilience.
--- We are celebrating our country's independence confined to a hospital room- ha- but Goose is doing awesome. She's walking around, standing and playing, using the potty again and just in a really good, playful mood. ♡♡ Pretty boring and uneventful day planned for today and tomorrow it looks like. Last we heard, there was plans to start a gentle dose of chemo on Sunday to buy her two more weeks of good numbers so the antifungal can really saturate her body.
--- Too many steps forward, I *knew* something was coming. Lucy's PICC line has pulled out from the "ideal" end location so now they want to go back in and replace it-likely Monday. I'm not entirely sure what they expect when hanging 5 pounds of tubes off of a tiny 2 year olds arm. One very frustrated mama right now.

July 5, 2014 She tried taking some oral zinc and vitamin c resulting in two bouts of puke. Clearly she didnt receive the memo that puking=sadness because she is still as goofy as can be!

July 7, 2014 The strength of my 2 year old astounds me. She had a wound vac change this AM and they didn't rewrap it in gauze. She was just inspecting it, and instead of freaking out {like I did the first time} she finished checking it out and turned back to coloring and smiling.

July 8, 2014 We have conquered the fungus, or at least scared it enough to never show it's face in Lucy's body again! Now we are waiting on the oncologist to decide if we will start chemo today (praying for this!) or tomorrow.
--- This guy. Love him. Alas, he just left for work for the day. Who wants to come play? Bonus- Goose has been in a really awesome mood the last few days!

July 10, 2014 Prayers once more needed. Please all, with everything you have.
--- Noticed a good sized lump just above Lucy's elbow tonight. Waiting for an ultrasound to be done. Please pray it is nothing serious. frown emoticon --- Well, it only took 18 hours but we have finally heard back results from the ultrasound. The lump has continued to harden throughout today, but has not grown from what I can tell. According to the resident it is a skin infection and should be resolved via antibiotics. Please pray that they are correct and this is healed asap. Our little warrior needs to catch a break!

July 11, 2014 Thank you all for your prayers. There have been a few spots pop up that look similar to how the fungus did. Also there is another spot that looks like the one on her elbow they thought was a skin infection.
They are still going to start antibiotics and she is due to go to the OR to biopsy the different spots to see if they are fungus or something else.
Continue to pray.
--- Waiting on transport to take us to the OR for the biopsies.
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My little warrior. This marks a dozen times under anesthesia and her 7th debridement surgery. Our surgeon saw the new spots and was certain they were fungus and planned to remove all of them. I just received a call from the OR nurse to let us know everything was going ok {again, why I adore him} and they were just waiting for pathology to get back to them on the biopsy.
--- This girl. Everything she has been through in the past 24 hours and she still has smiles and decides to wave to the camera. Love her!
--- Update time...

They had to remove several more fungal lesions from her body today. She now has 3 wound vac spots, and has earned the right to higher dosage of one anti-fungal and another anti-fungal was added to the roster.

She is once again lesion free, but we are going to have to make some hard decisions in the near future on which to really attack head on: Fungus or leukemia.

I know you are all praying (thank you!) for a miraculous healing...don't stop. Her little body needs it.

In defiance of the odds, Lucy presses on...Praise be to God.


July 12, 2014 CT scan came back showing more in her sinuses, small lesions deep under the skin along her waistline, and a couple on her lungs.

It also showed that she has some swollen lymph nodes in her neck that could just be post operation symptoms.

We are hoping that the increased meds take care of them otherwise more invasive surgery is imminent.
--- Just sent her off to surgery, again. frown emoticon Please, pray without ceasing. They think it has penetrated a nasal bone and is very close to her right eye. ---
I title this post "Cautiously Optimistic"

They had to go back into her nose for further debridement. That took them into the facial bone where the nose branches off into the eye socket. This was removed which did not change the structure or appearance of her face.

The ENT doctor did say that he felt the fungus looked like it was on the retreat from what he could tell! Hopefully he is right.

Right now we are in recovery waiting for her oxygen saturation to get back to mid to high 90s. She is currently hovering between 90 and 93.

--- A beautiful end to this day.

July 13, 2014 Wonderful Sunday morning!

July 14, 2014 Back to surgery. Lucy knows where we are going now. She kicked and screamed as soon as she saw the elevators and continued until she fell asleep on Kimberlee Bradford at least 20 minutes later.
You know the drill...pray this be the last surgery and all that fight she displayed be redirected in killing the fungus and leukemia once and for all!

Wow that took a lot took keep that PG.
--- Preliminary report showed the spots as negative for fungus! Pray the report stays that way!

July 15, 2014 Post operation exercises...






July 16, 2014 A little update. 4 of the 7 biopsies that the ENT took on Saturday came back positive for fungus, so she has OR time scheduled for further debridement this afternoon at 5. She is also having another CT scan done at 4:30 to check for more fungal spots that may be developing out of sight. I am so thankful that we mentioned trying to combine these 2 things, hopefully sparing Goose the need to unnecessarily go under anesthesia multiple times. Still no word on Monday's biopsies.

We are also excited that it is confirmed that Goose will be utilizing hyperbaric chamber therapy to *optimistically* help all these wounds heal and stop this stupid fungus. She is scheduled to be transported back and forth to Scottsdale Osborn on Friday morning for a consult and possible first dive.
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Watching Nemo with sissy. ♡
July 18, 2014 Sorry for the lapse between updates. The last few days have been more hope filled.
Biopsies are coming back negative,
CT scans are coming back the with no change, Hyperbaric treatment started,
Most importantly, Lucy has been a major goof ball. Doctors continue to marvel at her temperment and fight in the midst of all this.
We told them she is stubborn, they are starting to see just how stubborn our beautiful Lucy goose can be.

--- First taste of sunshine in 5 weeks! Longer update later tonight. 🌞
July 20, 2014 Got my snuggles in with Lucy this morning! Watched some Nemo and Tangled, made a craft, played phone games, drew, played store, and just chilled with mom Kimberlee Bradford , Ike, and dad Andrew Bradford.
--- Debridement surgery scheduled for 5:30 tonight. Found a second spot on her upper right leg. They are small and deep currently, but if we can feel them they need to be taken. We requested sooner rather than later, and thankfully the doctors agree.
--- Some pre-transport ativan meant Daddy got to ride down with Lucy and get lots of cuddles and giggles pre-surgery! ♡ --- Her night nurse had me mark where her wounds were, so here is all 25 current ones. The ones on her butt are actually on the other side-whoops! And another nodule popped up on her bottom tonight, prayers for an easy debridement appreciated.

July 23, 2014 Sleeping in wait for a 4:30 surgery. They found fungus in her nose again but the cultures have not grown anything.

This means it may be dead fungus (the only good kind of fungus imo) but they don't want to take any chances.

Also the CT scan from yesterday showed no new spots and the spots on her lungs had either disappeared or were calcified. That means they were never fungus!

One step closer...



--- Out of surgery...

Body looked great to the general surgeon.

Nose biopsies came back clear for fungus.

Antifungal levels in her blood are within the optimal range.

Next step is probably chemo on Friday.

Kim approves of this message.


July 24, 2014 Super Goose- waiting to have her picc line rewired... AGAIN!
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July 25, 2014 Other than the picc rewire a relatively uneventful day around here. Lucy is scheduled for another round of "gentle" chemo when she returns from her hyperbaric treatment in the morning. They have told us just shy of a million times that the chemo was not to blame for this second round of fungus lesions. Regardless, I am scared to death. Please continue to pray that the fungus is completely under control now and we aren't going to send her sliding down the hill tomorrow.
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Post hyperbaric chamber yesterday.
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This crazy girl totally rocked the "tube" today!
Lost a wound vac at some point though, so likely going to have a more exciting afternoon than mom planned for with a dressing change needed.

July 26, 2014
Hanging with Aunt Carla- necklace swap!

--- This has been a spectacularly boring day. The chemo has been running for 22 hours and at this point last time more lesions had popped up.
This time ZERO have presented.
This is a trend we are anxiously hoping will continue.
July 27, 2014
Sunday morning fun. Sending heaps of gratitude to those participating in the car wash. ♡

--- In it goes. Her 24 hour push of chemo has begun. Please join us in fervently pleading to God that the fungus is under control and we don't begin to see lesions again in the coming days.

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Laying here, cuddling my sleeping baby Goose and just a complete bag of mixed emotions.

Beyond grateful that we have so many friends and family that are here supporting us in so many ways.

Happy that I am still here in this room with my baby girl who refuses to stop fighting.

Sad that I am away from my little dude and husband for yet another night, and that I have missed the last 2.5 months of my big kids lives. They are back to school tomorrow with my Zo starting kinder, and I won't be there to send her off.

Scared to the point of paranoia that more fungal lesions will come. And worried that I am going to overlook something now that I don't have Andy here as backup while checking her.

And just angry. So very angry that we are even dealing with this. I've heard just about every cliche inspirational phrase available for these "situations", but it doesn't make me any less pissed off.

I just want my baby girl healthy, so our family can get back to our same ol' boring existence.

July 28, 2014 --- Sorry for the photo overload, but my gosh did this take a lot of work. Reveling in my victory over 2 very cranky kiddos!
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10 weeks since diagnosis, 7 of which have been spent in PCH. Today is 6 weeks for this stay.


July 29, 2014
Hi all, sorry for the lack of update!

I want to begin by once again expressing our overwhelming gratitude for all who participated, near and far, in the car wash for Lucy. The proceeds are an amazing blessing right as her official bills begin rolling in. As many of you know I work freelance and had to take a major step back when she was admitted again. I just submitted my invoice for this month, and the lack of work shows. So again, thank you! Your generosity is allowing me to be here completely focused on our baby girl. ♡
Other than that, not much to update. No fungal lesions have popped up. Instead it seems her skin is reacting like crazy to everything going on so she is getting "spots" everywhere from scratching and the adhesive from various tapes and bandages. Some areas are spots that havent had tape in over 2 weeks! Otherwise, we are doing hyperbaric in the morning and hanging out in the room the rest of the day. We did escape this afternoon (in her toddler carrier) for a few laps around our wing of the hospital. smile emoticon

Team Lucy shirts are still available for about another week athttps://www.booster.com/teamlucyb3. And Rachel Ann Cussins has the Team Lucy wristbands for sale!

Thank you for your continued prayers and support.


July 31, 2014 Another quick update. Lucy finished her hyperbaric treatments this morning (10 dives), and will only restart again should she require any more debridements. Her skin is still covered in areas of breakdown from adhesives, but they are at least not getting worse! Other than dressing changes she has nothing on the books until Tuesday when she will have another spinal tap done and chemo injected into her spinal fluid. God-willing we have cleared this hurdle for good.


August 1, 2014 With a little ativan changing the dressing on her wounds went well today.
--- I've hemmed and hawed over posting this, but...
If ever you feel like life just sucks or is unfair keep in mind that things could always be so much worse. I could only dream of being a fraction as brave and strong as my two year old.
(And this isn't even all of them!)
--- PRAISE GOD! After almost 7 weeks, she is off of contact precautions. Playroom here we come!!!!


August 2, 2014 Out for a Saturday morning drive
--- Crazy! Some eyelashes have not yet fallen out with new ones growing in all across.



August 3, 2014
I ❤ this family so much... Extremely grateful that we were able to take Lucy to the playroom this evening! Still praying everyday that God continues healing this brave little warrior.


--- Our stubborn little Lucy has figured out how to vomit her oral medications with ease.

The doctors think she is nauseous but they are now on their third anti-nausea medicine with the only one that semi works is the one that also makes her happy and carefree. Plus 1 ml of med causes her to vomit but she can drink a half a bottle of water and be fine.

Hopefully she gets over this phase, because everything else seems to be going pretty well aside from her appetite is still nonexistent.
August 4, 2014
Ativan means easier time with meds AND actually wanting to see (and play) when pet therapy visits. 😃


--- How freakin adorable is this?! Thank you so much Yanira Raabe, Raquel Calderon, Yani's mom and Nicholas. ♡


August 5, 2014 This is going to be a hefty update! Happy reading!

We are coming to the conclusion that the med/gag issue is in fact anxiety. Not sure what spurred it suddenly, but we think we have figured out treating it, at least for the time being. Now the key is lining the timing up with when she needs to take her meds so that we can keep her a happy little camper.

Yesterday, Lucy endured FOUR dressing changes on her PICC line. One right after the other either pulled up, was kinked or God-knows what! That added up to 6 dressing changes on the line in just a few days as opposed to the once a week it should have been. Her surgeon mentioned tonight that they are deciding on placing a port again. A port would make life a heck of a lot easier for little Goose, especially once we are home. She could also be "losing" two of her wound vacs- the ones on her arm and shoulder- tomorrow and switching to just a dressing.

There has also been a change in plans regarding her cancer treatment. We are hoping that it is a plan that was developed out of optimism in her body's fighting ability and confidence that the fungus is under control. Tomorrow she will be going into surgery in the afternoon for a lumbar puncture, chemo into her spinal fluid AND now also a bone marrow aspirate. The last of which was a shock to us to find out today. It appears her doctors have decided to move her onto the consolidation round of chemo which is a much more intense round than what she was currently receiving. We are not 100% on how this will affect the idea that she could possibly be headed home within a week, and hopefully tomorrow's results will be nothing but optimistic.

Please continue to keep Goose in your prayers and thoughts. Specifically that 1) we can control her anxiety so that her body can get the meds that she needs to heal, 2)that her heart rate and blood pressure would continue to improve and lower, 3)that she would find her appetite again- she NEEDS to eat!, 4)that her spinal fluid continues to be clear of leukemia and that her bone marrow is no worse off than it was 7 weeks ago when it was last checked, and finally 5)that the more intense chemo treatment does not allow the fungus to attack her body again.

With all of our love and gratitude, always,
Kim, Lucy Goose and the rest of our gang

--- Last day of summer vacation...we had to go visit Lucy-Goose!! So glad to see her doing well and even a smile here and there.



---
My poor Goose. She scooted her little ship all the way down the hall just to find the playroom was closed- beginning the sobfest. Then she sat at these doors continuing to cry hoping to go through before finally giving up and going back to her room.frown emoticon


--- Our little rockstar is relaxing after an eventful afternoon. Hopeful for only optimistic results from today's procedures.
🙏


--- The doctors have put the brakes on chemo until they get a consensus. This is a good thing in our opinion because it felt like they went into hyper drive.
Today's CT scan, spinal tap, and bone marrow should give us the ability to make a more educated decision.
What we know so far (not much):
Preliminary on the spinal tap is that the leukemia has stayed out of her spinal fluid.

Some bone marrow results should be back tomorrow. Not sure if they are sending it to Seattle again or not.

CT scan should be tonight or tomorrow.
August 6, 2014
I'm sure you all tire of seeing snuggling siblings. I, however, never grow tired of capturing these moments. ♡


August 7, 2014 Chemo starting now.


August 8, 2014 Giving mommy kisses as we stroll to the playroom.

---

Playing hooky to play with sis and kids


--- Mini preliminary update: Began the consolidation phase of her chemo yesterday, it is 56 days of various drugs at various times. Her spinal fluid came back negative (as it has been all along). The preliminary report on her bone marrow showed clear here in Phoenix, again- same as at day 29, but we are waiting on results from Seattle with her MRD number. So, in a nutshell, it at least *appears* that the leukemia didnt come back with a vengeance over the last 2 months as was feared.

Continued prayers that Seattle's results will be equal to if not better than they were at day 29, and that her little body will tolerate the chemo well and keep the fungal infection in check throughout. ♡

August 10, 2014
Sunday selfie with my Goosey-goo!
--- Thus far Lucy is reacting great to the new round of chemo. We will hopefully have results from Seattle Monday or Tuesday this week. A lot of talk about a different IV line and trying an NG or G-tube for feeding all in prepartion to start heading home soon-ish (within the coming weeks??) Prayerfully she will stay fungal-lesion free and continue to respond well to the chemo so we can bust outta this place!
---
"I love you, Isaac!"
Heart. Melting.
Love my sweet and sassy girl

August 11, 2014 Fungal lesion free ✔
Cancer free ✔
Wait, what? YUP!Goose's MRD results from Seattle came back negative and she is now in remission! Just plain amazing.
Best. Day. Ever.
August 12, 2014 Yesterday's awesome news is hopefully just the first victory in what is still going to be a 2+ year battle for our Goose.

It looks like she will be headed to the OR sooner rather than later to clean out the "hole in her butt" from a suture popping open last week. Sounds more than likely that she will have a wound vac placed on it. She also had her NG tube inserted last night, much to her dismay! We need her to leave it be so that she doesn't need a g-tube put in, especially since her surgeon is not comfortable with her having one (healing wise).

Please continue to keep Goose in your thoughts and prayers- they truly work! Specifically today that her body will continue to keep the fungus suppressed (forever!), that she will be ok with the NG and that none of the other wounds cause more trouble.
---
Watching the rain from the family lounge. smile emoticon


August 13, 2014 Little brother has arrived and all is well in Goose's world. ♡ A switch flipped a few days ago and her overall demeanor has been constant glee (with occasional screams- think dressing changes!) and smiles for everyone. She loves getting out her room and has started walking quite a bit. Surgeries scheduled for the end of the week, with two of her wound sites likely needing debridement for infected tissue. BUT her knee debridement has healed beautifully shocking all of us at yesterday's dressing change, so she could possibly lose that wound vac!

August 14, 2014
Aww, gotta love a breastfed babe... "My boobie" - after telling Goose that the bag was her milk.

August 15, 2014
In surgery now, hoping for a smooth, surprise free report from all her doctors in the coming hours. Goose was rockin' out and having a good time before heading back.
--- Post op update.
Nose looked great. They just took out a bunch of dried blood.
Body is back down to 1 wound vac. The one on her knee is gone, only the one on her buttocks remains.
Spinal tap preliminary results were negative.
The rest of the weekend should be just training for Kim and I so we can GO HOME! They are saying Monday or Tuesday we could be discharged.
August 16, 2014 Ugh. Possible fever. Can she catch a break already?
--- Definite fever. :( High ANC though, so hopeful we can give her a single-dose antibiotic to knock out whatever is causing it.
---
Goose's fever broke fairly easily last night and has stayed away. She is dealing with quite a bit of blood drainage from having her nose and sinus cleaned out which is causing her to be very pukey. We have lost several NG tubes the past couple of days, but thankfully Andy and I have become pros at dropping new ones in! Here's hoping for an uneventful rest of our weekend.
(And a pic from a couple days ago, because these posts are always more fun with visual aides.)

August 17, 2014
One of Goose's cultures from surgery has returned positive for staph. The infectious disease doc says this is basically a small issue, easy to treat. It just sucks. One more thing requiring her to be on even more medicine. 😑
August 19, 2014 Oncology, ENT, Surgery, Infectious Disease, Nutrition and Nephrology have all given the ok for Goose to head home! Barring any major changes overnight, tomorrow should be the day. She still has a long road ahead of her, but we are all more than happy to close (lock, deadbolt, chain, weld shut?!?!?!) the door on this stretch of the journey!
---
Wanna know who isn't my friend tonight? All the insurance and hospital suits. Waiting on approval for Lucy's wound vac because she is under 12?!?! Soooo not a happy camper being stuck here tonight. Their only saving grace is how sympathetic the doctors and nurses are about the stupidity.

August 20, 2014 Let us out! We're goin' craaaaaaaazy! 😲 --- We have been surrounded by some totally awesome medical personnel over the past 2 months. A couple have really made this stay, dare I say, fun at times. This pic just cracks me up because Goose ADORES Shelley, but as soon as it was time to take a picture she became such a punk.
---
We are getting soooo close. Just a flush away!
--- And we're off!

August 21, 2014 It's hot as heck but, by golly, Goose wanted to be outside! [Overprotective] Mom got her all suited up and out we went. She's lucky I don't have one of those jumpsuits like I had to sport!

August 22, 2014 Lucy has a fever of 100.6. If it doesn't go away in the next hour we are back to the hospital
--- I think ny response in the comments was buried. The fever broke within the hour.
Thank you for rallying your prayers and well wishes so late at night. They kept us out of the hospital!
---
Kimberlee Bradford and Lucy are headed back to the hospital. She spiked a fever of 102.5.
---
Here we go... Round #3. Let's make this one short and sweet Goosey-goo.

---
Lucy is cozy watching princess and the frog. The fever is to be expected. Her immune system registered a 0. That is the goal of the chemo, wipe her system out and allow it to rebuild. Long story short...She will be here for a few days for observation and tests.
August 23, 2014 Special visitors+contact precautions= Akward photo lol

August 24, 2014
Lucy has a stomach bug called c diff. Basically the antibiotics have killed all the bacteria in her stomach, both good and bad, and allowed this bugger to pop up. It is common and easily treatable however.

The top 5 symptoms are fever(check), nausea/vomiting (check), frequent loose stool (check), loss of appetite (check), abdominal pain(not check).

4 out of 5... you know Lucy, go big so we can't go home. Hopefully, our family will reunite again later this week.

August 26, 2014 Almost done with your bed Goosey Goo!
I love you!


--- Ladies and gentlemen, I just performed all of Goose's wound dressing changes as she slept with nothing more than a small stir and a single whimper! Boom! Andrew, I contemplated calling you to brag about this, but figured I would let you sleep.

wink emoticon


August 27, 2014 A little update:
•Wounds are looking really good. In fact, her original 3 wound vac sites have actually hyper-granulated at this point! Her hole-in-the-butt is filling in nicely too.
•She has kept the same NG tube in for longer than she was home (ha!), but really that is nice simply for not having to continually drop new ones in.
•She is down 2 antibiotics since the fever has stayed away since Sunday night. Hopefully that continues, if for nothing else but to help her nausea and diarrhea. Her nausea has improved drastically, but she is still vomiting every morning.
•She has OR time scheduled tomorrow for her last of 4 weekly lumbar punctures and CSF chemo in this round, as well as a push of chemo through her broviac. Her ENT is also going to go in and clear out her nose and sinuses of dried blood and mucus.
•Please pray that her gut will heal and for her body to begin rebuilding healthy blood cells so her ANC will climb and she can get home. Her disposition has been ever so unpleasant the majority of this stay.



August 29, 2014 Today's procedures went well. ENT once again cleaned out a bunch of dried gunk, but said things looked great. Goose is really struggling coming off of anesthesia today though. Her blood pressure has been crazy, heart rate is racing, very tired, quite a bit of puking and much more annoyed than even what is normal for her. Please pray she can find relief overnight and wake up feeling more "normal".
---
Please pray for Goose. Today she still has an elevated heart rate, high blood pressure, acting lethargic/grumpy and rapid breathing yet no fever. She just had another chest x-ray done and more blood drawn for labs. We need to figure out what her body is trying to battle so we can help!frown emoticon



August 30, 2014 Update~
It appears that the domino effect of medical treatment is at play. One of her antifungals causes her kidney to be under stress, so we supplement her potassium. Well the potassium she was on was causing her body to expel too much bicarbonate causing her blood's ph to be out of whack. To compensate her body is actually reacting how it should- increasing her breathing to increase the carbon dioxide to help bring balance to her blood. They are transitioning her to a different type of potassium slowly (to make sure her kidneys can handle the change), and we should see continued improvement.
Please continue to pray that this is in fact the cause and that her little body will readily take the changes we provide to bring balance.
--- In much better spirits today. Nephrology says it could either be her GI tract or her kidneys that are wasting the bicarbonate. It could just be her kidneys struggling with the antifungal, or being combined with the antibiotics, or ????. The issue could resolve once off the meds or she could deal with it forever. Hopefully her urine test and blood tests will provide some clarity. The practice of medicine is full of all sorts of unknows with this girl of ours!


September 1, 2014 I suspect someone is starting to feel better. Goose is in a super giggly mood NOT drug induced. 😆

--- X-ray and all tests came back fine except one. Her kidneys have been under a lot of stress because of one of her antifungals. This has caused her kidneys to not work as well as they should causing the pH of her blood to be acidotic. Elevated breathing rate is the bodies natural way of regulating blood pH.
They made some changes to her supplements and it seems to be helping. Only time will tell if these effects to her kidneys will be permanent or not, but they will most likely be permanent. She will just have to take these supplements indefinitely.
Please pray that a life of supplements is all that is needed. They said kidney failure is highly unlikely, but so is MCADD, leukemia, and mucormycosis.

September 2, 2014 Relaxing while receiving a little midday pick-me-up.

And her ANC is on the board! Came in at a whoppin 4, but 4 is more than 0 and we will take it. Hopefully it will gain momentum and get to where it needs to be in the next few days so we can look at moving this party back to the east side!
😆

September 4, 2014 She decided she wanted to give her feet a bath. Its the first time in almost 12 weeks that any part of her has been submerged in water and she loved it! ♡
This morning her ANC is at 27! Two days ago was apparently incorrect (according to the oncologist), but happy to hear it is truly on the board now.
🎉



September 5, 2014 Lucy has "spiked" a fever (100.9). Prayers it is nothing serious are appreciated.

September 6, 2014 We will start with a bit of celebration...no fevers for the past 36 hours. Monocytes (early stages of white blood cells) are up to 68.
Unfortunately, she is back down to an ANC of 0. So home is still not possible.
Please pray that the Monocytes mature into neutraphils so that her ANC will spike and we can come home. Hopefully for an extended time.
---
No fever today...not even the low grade one that she usually gets around this time. Hoping for a miraculous ANC spike so I can sleep in the same bed as Kimberlee Bradford.

September 7, 2014 ANC 41! Thank you Lord. Keep praying, we have to get to 200 to 250 to go home.

September 8, 2014 Up to 112 this morning, oncologist thinks it could be as soon as tomorrow. Come ooooooonnn Goosey, you got this baby girl! ↗
--- Just shy of 6 weeks later. She should be done with the wound vac on her bottom on Tuesday, fingers crossed. ---
Go to sleep, Goooooose! Momma's tired. 😴



September 9, 2014 640!! Goose is a rockstar warrior so at some point today we get to go HOME!!!!!
Still snoozin away after a 5AM broviac dressing change (after a 9PM one lol).
--- Wound vac free, baby!!!! 💃 --- Home, sweet home. ♡ And less than 10 minutes in my office and I modified Zeke's old backpack to hold her feeding tube so she has complete freedom to move around.
September 10, 2014 Ready to go get Bubba and Sissys! She is appintment free until next Tuesday, begging God that it stays that way!
September 12, 2014 Sweet and sassy.

Goose has been in an awesome mood since being home. Getting used to using the potty again, loving playing with her siblings again, taking nibbles of FOOD, and hasnt thrown up once since we left the hospital!
--- A little bedtime reading.
We have officially been home for the longest span of time since June 16! Nearly 3 months! She has done great and is loving "normal" life. ♡

September 14, 2014 Well that was fun. Just successfully completed our first independent broviac dressing change thanks to a lovely stomach-sleeping poopslosion.

September 16, 2014
On her way to see Glenda to get wounds checked and dressings changed.


September 17, 2014
Ready to head to clinic this morning. Depending on counts she should be starting her second half of consolidation today. ---
Someone has been in an exceptionally goofy mood allllll day at clinic! Just a few more hours to go....



September 18, 2014
How stinkin cute are these two giggle bugs???


September 21, 2014
First real bath in over 3 months, no joke. We had one happy little Goose.


September 24, 2014 Clinic is complete for the day. ANC is still nice and highat 1500, but she will get the count-wipeout chemo next week. We will go back on Friday morning for some platlets as well, but grateful for an easy day today.


September 26, 2014 After a long night of sneezing blood clots and puking from draining blood we are at clinic getting platelets transfused. Poor Goose is worn out.


September 29, 2014 Classic Goose, her and Andy just finished at clinic where she received blood and platelets and apparently an xray. Her belly was distended this morning, so combined with her puking we are hoping it is a simple supplement level correction and nothing more. She is also dealing with a cough and congestion today as well. At any point a break from stupid, rare and random side effects would be greatly appreciated. frown emoticon




September 30, 2014 At clinic, getting 2 hours of fluids while we wait for ultrasound and chemistry reports. Praying for non-impressive results because I'm just not ready to go back to hospital living.
frown emoticon

--- Its like a horrific dejavu....we got exactly 21 days at home again. Will come back later with more details as we learn, current working diagnosis is veno occlusive disease. Please send everything you have to our baby girl.

--- It is all but official that she has VOD, which is damage to blood vessels in her liver. This causes a multitude of problems, one being fluid retention, which her protruding belly nailed that.

They are very confident in their ability to treat this and it is only a 21 day treatment.

They said it is rare for someone outside of a bone marrow transplant to get this, but our Lucy prefers the rare.

I am cautiously optimistic, solely because it seems too easy. Nothing in this process has been easy.

October 1, 2014 Goose began the 21-day study for the VOD treatment today. She doesnt seem to be responding to the lasix as well as she has in the past though. Hoping the defibrotide starts moving things in the right direction swiftly.
--- PICU+Goose= A nurse's nightmare
{well, except that I untangled it soooo....}

---
Let the cuddling babies overload start again! 😍 We've got at least 3 weeks, folks.


October 2, 2014 We ***NEED*** Goose to pee! The road she is traveling heads to dialysis, she needs to turn this party-train around! Her kidneys need to get back to fully functioning and get this extra fluid OUT already!
---
Thank you Amazon for *finally* coming out with an android instant video app so I could meet Goosey's demand for Dora?!


October 3, 2014 Goose had good output yesterday afternoon, but we need her to continue. Due to only having a single lumen Broviac, she is scheduled to have a double lumen PICC line placed this evening for additional access. The study she is on requires that her blood and platelet levels stay at a certain level, but the number of infusions she is on is making it impossible to keep everything scheduled and going as needed with only 4 lines and compatibility issues.

But here is a happy photo. "Look mama, I stand!" she proudly declared this morning. This is actually quite the feat with all those tubes. Ha!
--- Feeding Buddy some of her ice

---
♡ my goofy Goose



October 4, 2014 Scrolling through old photos and came across this one from her time at home. No special angles for dramatic effect, my baby girl is really missing that large of a chunk out of her right side. frown emoticon

--- 15 weeks ago I crumpled in this corner as our surgeon delivered the news that he wasn't sure we were going to get ahead of the fungal infection that was taking over Goose. That day is the worst day I have lived through, and God-willing the worst day of my life.



October 5, 2014

Today's theme: Progress.
She is continuing to void as desired, numbers are improving, doctors are happy with her response. So we continue to stay the course.
⛵ {She is currently neutropenic, so the wounds are a bit more red than typical. End of July/Start of September/Start of October}
---
In a Cruella trance...



October 6, 2014
Checking now to see if the bloodflow to her liver has reversed yet, but before we've even got this problem solved another has cropped up. I just signed consent for a 7 am surgery to debride one of the scars on her right leg. It has a hard mass underneath that we felt late last week. It hasn't changed at all, but we trust her surgeon 100% and if he thinks it needs to come out then we do too. I will update after surgery, hopefully with boring news.

--- Annnnnd fever. WE GET IT UNIVERSE, ENOUGH ALREADY!
---
This. Because seriously. Fuck cancer. There, I said it.



October 7, 2014 Have I mentioned we love her surgeon? Well, we still do, but I'll get back to that. It has been excised, he *thinks* it was hypergranulated scar tissue, but sent it off for culture. Gave her a good look over, and cauterized two of her woundvac sites that had also hypergranulated. Overall, it was good news.
💞He recognized the "oh crap" feeling he must have caused by calling us into a consult room- that has only happened once or twice, never with good news. And he said she held his hand while falling asleep (awww) and joked that he knew it was drug-induced, but he would take it!
--- As always, it seems, some bad with the good. The effusion around one of her lungs seems to be worsening, we will be checking via xray shortly. She has been struggling to keep her sats up and is using high-flow oxygen currently. If this continues, or if they decide they need to drain the effusion she will likely be put on a breathing tube.
--- A cold. Seriously folks, a cold! The nose swab came back positive for rhinovirus. We are waiting for results from the (6!) cultures drawn last night, but it's looking like the cold is what brought on the fever last night.

Her ultrasound showed that the veins have actually constricted more and more fluid has built up in her belly. Her other numbers in regards to that are still looking ok, so the SOS (VOD) is in a continue and watch state.

The xray looked marginally better on the effusion side of things. More waiting and watching. But it is looking optimistic that at least a breathing tube wont be needed anytime today (ever?! Please)

We NEED her to get this extra fluid out though. The longer it stays and the more it builds up the closer she works herself towards dialysis.

---
What little good news we started today with has turned into a shit-storm of worse news. Goose's cultures came back positive for bacteria on all 3 of her lumens- indicating that she is septic. We need her to fight, once more, with everything she has.
---
fuck, fuck, fuckity, fuck, fuck, fuck. FUCK.

October 8, 2014 The doctors have reached a point where they feel they need to take over Lucy's body to help her heal.

This morning, Lucy was sedated, had a breathing tube placed this morning and had a drain implanted in her side to get the fluid away from her lungs.

Her numbers have stayed fairly the same, which is good in that she isn't gettjng worse, but bad in that the numbers are not good to begin with.

In short, frak frakkity frak frak frickin frak. (Shout out to Kimberlee Bradford)

The hope is that the antibiotics will take effect quickly and allow the blood to retain the fluid so that it will stop going into the tissue. When that happens, we will have turned the corner and avoided another life threatening problem.

--- I'm sorry if you've already answered this question, but is Lucy just under sedation while they place the tube and drain the fluid or will she remain sedated for a lengthy amount of time? as always, I am praying for you all. Love you. Honestly, we dont know. She is sedated until the fluid in her belly goes down. Whether by responding to the antibiotics and other treatments or if they have to place a drain like her lung. According to infectious disease they have narrowed the bacteria down to the family, but will be until tomorrow to know what exact species she has. The cherry on top is that, per Goose style, she has chosen the rare bacteria to get.
October 9, 2014 Right now, all she needs to do is pee. Fluid continues to build up which is making it harder for her lungs to inflate.

The diuretics aren't working as well as they would like. She is has at least 1000ml of extra fluid on board right now and her last diaper had 40ml.

Pray for a flood of urine to come asap so she doesn't have to get a drain put in the belly. So that she can breathe easier and take strain off her kidneys.
--- The fluid they drained came back with the same infection as the blood and also the mass that was removed from her leg. The cultures from two nights ago came back negative, so the antibiotics are working.

Fluid infections are hard to treat because the antibiotics travel through the blood not this excess fluid.

They are going to put a catheter in and a drain in her belly to try and see if that will help her kidneys move fluid on its own by relieving what they can.

Every decision has the risk of further problems because we are kind of robbing Peter to pay Paul in hopes her body will react fast enough to compensate.

If its not obvious, this is not the progression we want but it has become a necessity. ---
Update on the last 2 hours.

Arterial line placed to watch blood pressure, blood sugar, and another place to draw blood.

Foley catheter placed to pull the pee out (175ml immediately). Honestly never thought I would be begging one of my kids to pee.

Drain placed in her belly and will be a slow drain so we dont just make more room for more fluid.Hopefully this will cause things to turn.



October 10, 2014 Not a whole lot to report. She is stable as she can be. We just have to wait and see.

The actions of today definitely were right. Tomorrow will bring a white blood transfusion that should mostly help but may do some damage before making it better. This is because she will go from no white blood to having some and it may cause an inflammatory response in various parts of her body.

We are taking it hour by hour, because things switch directions fairly fast.
---
Small steps in the right direction. She has peed well last night and this morning. They may have to put a drain in her left side. But everyone seems to feel we are moving in the right direction. --- White blood cells about to start. Hopefully there is no major negative reactions.
---
For anyone who needs a reminder of just how great their day {week, month, life...} really is. She's fighting with all she has because thats how our Goose rolls.
‪#‎fuckcancer‬ ‪#‎teamlucy‬


--- Goose has had dozens of transfusions in the past week, even more in the last 5 months. Life-saving stuff here, folks, donate if you are able. ♡





October 11, 2014 Got to hang out with Lucy and family.

--- Thank you everyone for keeping our Goose in your thoughts and prayers. Its a comforting feeling trusting that her entire medical team (some who have "worked" on her as far back as her fungal diagnosis) really know her and seem to whole-heartedly care about getting her better. As one of current docs that has been a large driving force in getting her to where we are said today: we aren't in the home stretch, but we are rounding the corner. We can only hope we continue on this forward trajectory with no more backsliding. No more of this crap ->
🎢


October 13, 2014
Another victory! 🎆 Having her liver checked right now for the VOD/SOS and the flow has reversed back to the correct direction!


October 14, 2014 Well, fluid is still clinging tight and we need to give her nutrition (more fluid) so they will be inserting a catheter and beginning dialysis this afternoon. Goose is still creating urine, so we are optimistic that once we get the nearly 5kg of excess weight off of her, her functioning will recover.
---
Up and running. She only had a TEMPORARY catheter placed, so hopefully about 10 days and she will be back to "normal".


---
I spy, with my little eye, a tiny Goosey foot amongst all these gigantic machines.



October 16, 2014 The doctors made some drug changes this morning and Goose woke up and it was like the fog had lifted. She is suddenly very aware and seems a bit confused by her current state. frown emoticon
She is responding great to the dialysis and has shed 1kg so far. They are also weaning her ventilator settings as her lungs get stronger.



October 18, 2014 Perked up to listen to her nurse. (And modeling another adorable bow that showed up in the mail! xo)
Sorry for the lack of update, not much happenning here. We are making small and steady steps towards healing. Theme for this hospital visit has definitely been "Stay the course."🚢 We are looking at removing the breathing tube as early as tomorrow if things continue improving the way they have!



October 20, 2014 Ike and I were in our orange for Goose today! ♡ Thank you for continuing to send prayers and positive thoughts her way. I really just hope things are smooth and "easy" as we work these machines off of her.
---
It's been a while since an update. Good thing is that no news is normally good news and Kim and I are trying to catch up on rest and regain sanity from the marathon of bad news. But here it is. Lucy is still recovering, but she is recovering. She is due to get off the ventilator tomorrow at some point, as long as she is calm. They don't want her to go crazy and have to end up back on it. The issue is, docs told me today that she is kind of going through some withdraws from coming of the sedatives which is making her a teensy cranky.
Also, tomorrow they may take her from continuous dialysis to intermittent.
Once off these two machines, hopefully home won't be to far off in the distance. They said she can finish her antibiotics at home, so it is just how fast she stabilizes I guess. (purely speculation on that last part. Truth is, she will be home when she is ready to be home)
So we stay the course, and hope for no more bumps on this journey back so we can celebrate her 3rd birthday in 2 weeks!

October 21, 2014 Change of plans for today. We are down a machine... just not the one we had thought. Nephrology decided to stop her dialysis to see if her body would begin making urine again. If she doesnt have good output by this evening then they will be putting a more permanent catheter in for dialysis. Since there is the chance that she would need that done and it requires her being intubated they decide to not extubate her until they know whether she will need it (tonight/tomorrow morning). I trust that they know what they are doing, it just feels like we are suddenly losing our footing and sliding around a bit. Please pray that Goose's systems will kick back into action and perform the way they were intended. I really don't want more procedures and more tubes. I want tubes coming out, not going in! Hopefully I can update with good news and not a procedure time come morning.

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Well. Crap. Looks like she isn't responding as they would have hoped but as they expected. We will wait until her surgeon is available (our stipulation) to place a "permanent" dialysis catheter in the next couple of days. Thankfully, the permanent is not so much permanent as it is just better protected against infection. So we are optimistic that this is still only a temporary need, just going to be longer than anticipated.

October 22, 2014 Goose is scheduled for 11(ish) this morning because demanding a surgeon means taking whatever slot he has available. Prayers for a smooth, easy and non-exciting procedure appreciated.
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She has received quite a bit of blood product this morning {Don't forget to go donate this week!} and her temp is getting quite low. Trying to warm her up with mounds of blankets and the "bear hug" (a long balloon blowing warm air around her).

--- Hi all, thanks for your patience on an update. Surgery went well. She had a bit of bleeding her surgeon said, so she may have a pretty big bruise at the site. She has been sedated all day, resting, and the plan is to start removing fluid via dialysis again and possibly extubate on Friday.

The good news for the day is that her original "issue" this stay, the VOD, seems to have improved. So she is finished with that 21-day study. Her liver is still enlarged, but time and removal of excess fluid will help. We are hoping that once her liver shrinks back down that her kidney will return to normal to avoid any longterm need for dialysis.
--- And now she is ripening up like a little tomato! Holy crap, where is her break???? 😲 {This picture does not do her current color justice!}

--- She is still red, not spreading at least. Just gave her benadryl. Doc says its a "dime-a-dozen" PICU rash (say what?!), and it isn't life-threatening. Sigh.... end.end.end. head|wall

October 23, 2014 We were doing bandage changes on Goose this morning, all of which are looking AMAZING!, and I saw her leg from an angle I don't typically. And much like her right hip, I saw for the first time just how much was taken from the back of her left leg. My little warrior and her scars from a battle won. ♡

October 24, 2014 Prayers appreciated. Per her norm, Goose likes to confuse the crap outta everyone in the middle of the night. Will update when any of us know what is going on exactly. So far we know her temp is staying very low, her right lung is not doing its job currently and she is oozing blood(y matter) from her chest tube site.
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Not good. Lucy is bleeding internally. Rushed to or
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Today our sweet baby girl was thrust into the battle that would cost her the war.

Our little Goose spread her wings and flew away home this afternoon.

Lucy Selah Bradford
November 4, 2011- October 24, 2014

October 26, 2014 Friends, family, all those who our Goose has touched: Her service is planned for Sunday, November 2 at 4:30 PM at Harvest Community Church (3065 S Ellsworth Rd, Mesa, AZ 85212) We want to celebrate what a unique, spunky, just all around joy that she was throughout every day of her short life. We know that the love for her stretches far beyond this group so please feel free to share this information. It is open for any and all to attend.