One Year Out

Playing dress-up

Playing dress-up

Last week we passed the one year anniversary of the end of Emily’s treatment. Without a hiccup, praise the Lord. The past year has been one of amazing growth for Emily. She has completely caught up to the average height and weight for her age group, her cognitive development seems perfectly on track, and she’s still a little spit-fire. Turning into a bigger and bigger one everyday. She seriously cracks us all up on an hourly basis. Right now, as I’m sitting at my desk typing, she’s dressed in her “dance” outfit (a leotard and tutu and socks), singing to herself (as loud as she can, so it’s not actually to herself -the more people who hear her the better, in her opinion) while building a train track in the living room. She just came up and informed me that it is high time she begin dance classes, as she’s been waiting FOREVER. In fact, now that she’s five, FIVE, she should be going to dance classes, American Heritage Girls, and the hospital on a regular basis. Why she threw in the hospital, I don’t know, since her visits there aren’t as much fun as they used to be, but I suppose when you’ve lived your entire remembered life in the hospital, it might be a bit hard to let go. So I’ve got American Heritage Girls covered -she begins in the Fall, and she does still go to the hospital on a monthly basis, so I guess it’s time to begin looking for dance classes. Though, to be honest, I’m not sure a dance class could handle her😀

So a health update: Emily’s been seeing her oncologist once a month for the past year, getting a physical and having labs drawn. Her CBCs (complete blood count) have been great every month! Platelets, White Blood Cells, and Hemoglobin are all exactly where they should be. She hasn’t shown any signs of pain in her legs or hips, and she’s walking completely normal again (no flat feet from neuropathy). She hasn’t even been sick this year! Since she passed her one year anniversary, we get to start spacing our visits to once every two months – and I’m actually okay with that. At one time I couldn’t imagine going a whole week, much less two months, without knowing her numbers -but she’s doing so great, and it’s really nice to not think about it all the time.

The only thing we’re still watching closely is her immunoglobin levels. Ideally her body would be producing enough of these to keep her immune system healthy, and her number would be in the 500-1500 range. Unfortunately her monthly number usually falls between 350-480. All this means is that she’s still receiving monthly IgG infusions, which she actually loves, because it means she gets to go back to the Infusion Room to see her nurses and watch a movie (Now that she’s out of active treatment, she sees her oncologist and gets labs drawn in the adult lab, so no fun treatment or movies).

Next month we’ll have her heart checked to see if it’s been damaged by the chemo. That’s a bit scary. But honestly, it’s not something we can worry about. She’s in God’s hands, and I’m sure her heart is healthy and strong. But prayers would be appreciated.

2015-05-21 18.53.26

Throwing out the first pitch at a RiverCats game

just posing for the camera

just posing for the camera

Receiving her IgG infusion

Receiving her IgG infusion

2015-05-30 18.01.52

Feeding her newest cousin, Baby Jay

Haircut!

So our appointment was sooner than I thought, and Emily got her hair cut today! It is SO cute! We were a little sad to see the sweet curls go, but the bob suits her perfectly, and her hair feels so thick and healthy now. Seeing her new intentionally-short hair feels liberating -like saying goodbye to the had-to-be-short-because-she-lost-it hairdo, and saying hello to an on-purpose hairdo.

Best part, she loves it! She danced around the salon singing, “I’m so cute! I’m so cute!”

With Kaitlyn before ...

With Kaitlyn before …

freshly shampooed

freshly shampooed

IMG_20150305_124616694

loving it!

loving it!

IMG_20150305_125757225_HDR

so cute!

so cute!

IMG_20150305_125922678_HDR IMG_20150305_125929047_HDR

She loves it!

She loves it!

Three years later!

Hello out there! My mom, Grammiex10, keeps reminding me that people still read this and I should post an update, but we have been busy and this blog has fallen by the wayside. If you’ve been waiting for an update, I’m sorry! But, as we all know, no news is good news!

IMG_20150221_100153598

The three year anniversary of Emily’s diagnosis came and went without fanfare. I knew it was the 8th, but I didn’t feel any emotion really. The day that was the most emotional was actually the day our Classical Conversations group went roller skating for Valentine’s Day, since that was the event we went to right before taking Ems to the emergency room. But this year Emily strapped on her roller skates and skated to her heart’s content! Then she sat on the floor with some friends and proceeded to stuff her face with valentine candy😀

She’ll be five in just two months! And her growth spurt has continued to take off. She has just about caught up to the average height and weight of kids her age! She’s louder than the average kid her age … which only shows that Stitch is 100% back!!

Each month she sees her oncology team for a physical and lab work. Her blood numbers are still looking great! Hemoglobin, platelets, white blood cells, and her ANC are all in the healthy range. Her IgG is still lower than Dr. Ducore would like during the cold and flu season, so she’s still receiving IVIG once a month, and so far she’s been really healthy. The only bummer is that she gets a headache and neck pain for 2-3 days after, but she’s still a trooper and deals with it without much complaint. She just received her IVIG on Thursday, so today she took it easy, rested most of the day on the couch with a cold cloth, and took a couple naps. She’ll be good as new tomorrow.

Waiting for her IVIG on Thursday

Waiting for her IVIG on Thursday

If you can believe it, we have an appointment for a hair cut in a couple weeks! Her hair is getting longer, but it’s still somewhat uneven and thin, and her bangs are constantly in her eyes, so we’re going to go for it! Hopefully my hairdresser can even it out while still giving Emily the impression she has “Rapunzel hair”😉 I’ve been showing Emily pictures of cute little bobs, but we’ll see what works when we get there. I will post photos!

French braids after her bath!

French braids after her bath!

Last week we were able to help bring Build-A-Bear to the children’s hospital again!! Jason, along with a co-chair from CMN, and a sponsor from a local Chick–Fil-A, raised enough funds for all 71 admitted patients to build their own bears. Because Jason had to work, I got to go this year and help the Build-A-Bear staff and the Child Life staff deliver stuffed animals and hearts to the children. Each child went through the heart ceremony to bring their heart to life, then the med surge students sewed the animals up! It was awesome! By far my favorite event for the hospital.

Next week, on Tuesday, March 3, IHOP is hosting its annual National Pancake Day for the children’s hospitals. Go into any local IHOP and order a shortstack of buttermilk pancakes for free! But don’t forget to leave a donation that will go directly to your local children’s hospital! Or you can drive by the hospital on Monday, where they will have a mobile pancake station set up! Get your pancakes and make a donation there. We were so blessed by this event shortly after Emily was diagnosed three years ago, and we’re excited about it this year too! We even had the opportunity to talk with our local IHOP stores to thank them for what they do and share Emily’s story. We have seriously loved being able to meet and thank all the people who support our hospital!

Another annual fundraiser for the hospital is the tattoo-a-thon held by Wild Bill’s tattoo shop every February. Last year I got cold feet, but this year Jason and I took Emily, and I may have supported the cause with a tattoo of my own! Wild Bill has raised over $150,000 for the hospital over the years, plus another $18,000 this year. They even have a room in the PICU named for them.

That’s all for now! I’ll update again soon.

A little update after a long break

The first day of Classical Conversations

Excited for her first day of Classical Conversations

I have so much to write about, so many wonderful things that have happened since I last posted in (ahem) July, that I haven’t known where to start. So I haven’t😀 But tonight I have the urge to write just a little bit, to let you know how Emily has been doing since she completed her treatment a few months ago. Hopefully, in the next couple of weeks, I’ll have the time to come back and fill you in on all the cool things (like her Make-A-Wish trip for one!).

Playing with her best friend, Kayla

Playing with her best friend, Kayla

It has been five months and three weeks since she took her last dose of chemo, and four months since she had her Port removed … and she is doing GREAT! It was all very strange, at first, to not give her daily chemo – I had to squelch my fears and anxiety at what not having the poison in her body meant, sometimes worrying that the cancer would come back as soon as the last of the chemo cleared from her system. And, truthfully, I do still have to turn those fears over to God daily, because that is a real possibility. But she is still in His hands! And today she is doing wonderfully.

Holding newborn friend, Esme

Holding newborn friend, Esme

Monthly labs have shown that most of her counts are returning to normal. Her platelets and hemoglobin are both in the normal range, and many of her blood chemistry numbers are back in the normal range as well. Her white blood cell count has been running a bit low, but not so low that we have to quarantine her. Related to her WBCs, her ANC (immune system indicator) has also been a bit low, but, again, not terribly so. The only bummer has been that her IgG counts have not gone up yet, as hoped. So she began receiving a monthly dose of IVIG in November, and she’ll continue receiving it through the winter months. Because she no longer has a port, she has to have an IV inserted into her arm, which really stinks, but she is a trooper! I was nervous before her November IVIG infusion, after what happened in July, but everything went smoothly!

Trying on hats during Black Friday shopping

Trying on hats during Black Friday shopping

There really isn’t much else to tell about her health, which, in itself, is good news! She has had quite a growth spurt since ending treatment -she won’t be winning the “Tallest Student in Class” award anytime soon, but she is finally growing! Her hair is also s-l-o-w-l-y- growing longer. She still rules the house. I don’t think that’s going to change anytime soon🙂

Reading with Bapa

Reading with Bapa

 

 

Remembering our vets at the Veteran's Day Parade

Remembering our vets at the Veteran’s Day Parade

Monthly clinic visit as Anna, of course

Monthly clinic visit as Anna, of course

 

 

 

 

 

Last, here’s a video we filmed while waiting for Dr.Ducore at her last check-up.

And they’re off ——- Disney World here they come!!!

Make - A - Wish

Make – A – Wish

Today actually started on February 8th, 2012, when Chrissie and I (Grammie) took Emily to the ER at U.C. Davis Medical Center one night and Emily was first diagnosed with leukemia. Emily has bravely endured 2 1/2 years of daily treatments for leukemia – and, I might add, impressed and charmed everyone with her feisty, “Stitch” spirit. Chrissie, Jason, Ethan, Adam, William, and Sophie have also endured 2 1/2 years of treatments. It has been a wrenching, long journey, with many ups and many downs. Along the way, Emily and her family have been supported by some super awesome organizations – U.C. Davis Medical Center, Children’s Miracle Network, The Leukemia & Lymphoma Society and now – Make-A-Wish is taking their turn!

On May 28th of this year, Emily and all of her family went to the Make-A-Wish office in Sacramento and Emily informed them(!) that she would like to see Disney World and meet Minnie Mouse! TODAY is the day(!) – and a stretch limo picked them up at 5:00 am this morning! Well, they were supposed to leave at 5:00 am but girls’ hair – as in Chrissie’s(!) – delayed it a bit.

Packed and ready to go!

Packed and ready to go!

Emily - waiting for her turn to get hair done.

Emily – waiting for her turn to get hair done.

Bapa and a very excited Emily - Minnie Mouse ears and all!  Emily is wearing her Make-A-Wish T-shirt, which she is supposed to wear every day, so that people know who she is!

Bapa and a very excited Emily – Minnie Mouse ears and all! Emily is wearing her Make-A-Wish T-shirt, which she is supposed to wear every day, so that people know who she is!

Chrissie spent yesterday sorting clothes for she and Jason and five children – a set to wear on the plane – an extra set to carry in the carry-on bags – and clothes to wear during their adventures. Make-A-Wish gave backpacks to each of the kids for the plane and Chrissie had purchased some activity things to keep them occupied during what will be almost a full day’s flight to Orlando, Florida. The U.S. Military has nothing to the logistics of a mother trying to pack for seven people for a week with five over-the-top-excited children running around in the middle of it.

Someone's ready to go!

Someone’s ready to go!

Chrissie is obviously the hub of getting everyone ready!

Chrissie is obviously the hub of getting everyone ready!

Sophia!

Sophia!

The limo is waiting! - and waiting!

The limo is waiting! – and waiting —

The limo driver arrived shortly before 5:00! He was very patient. Children soon discovered their ride(!) and proceeded to check out every very-long inch of it!

A super-excited Adam - with Emily and Ethan!

A super-excited Adam – with Emily and Ethan!

So, this is what Make-A-Wish is doing for this family. They were taken by limo to the Sacramento Airport – and should be taking off right now – at 7:05 am – in a Southwest plane, on their way to Orlando, Florida. Chrissie texted me that they were given preferred TSA security, meaning they didn’t have to take off jackets or shoes or unload their bags of anything. That was very wise of someone to do as they didn’t get to the airport with all that much time to spare – at least not by Grammie’s standards. Chrissie said that the airline people also gave Emily a Disney coloring book with Minnie Mouse crayons! So their adventure has begun!

They will be staying at a place called Give Kids The World. It’s in Orlando, somewhere close to Disney World, and is only available for families of children with life-threatening diseases. These families are all sponsored by various charity organizations and the families are from all over the world. Emily and all will have their own villa, complete with washer and dryer! Why do I think that that will be needed?! Breakfast and dinner will be provided – there is horseback riding – miniature golf – an ice cream parlor – a spa for manicures, pedicures, and makeup(!) – and lots of organized activities. One Mom, who had already gone with her child, told Chrissie that Give Kids The World could be a destination, all by itself.

They will have three whole days at Disney World(!), where they will get to go to the head of all lines and will get to see places that the regular public doesn’t get to go – one day at LegoLand (Adam and William are particularly excited about this!) – and a day at Sea World. Make-A-Wish is providing them with a rental car – plus spending money for food and gas and souvenirs! They have left nothing undone – nothing —

And they're ready! (sorry guys - this is why no one lets Grammie take an important picture - I'd hate to spoil my record)

And they’re ready! (sorry guys – this is why no one lets Grammie take an important picture  –)

And they're off ---- !

And they’re off —- !

Emily and her family are beginning a much-deserved adventure today – one that could only have happened through the prayers and physical support and donations of money and food and child care from everyone who is reading this blog – as well as a big, big God. They are well aware that they haven’t fought this battle alone. Thank you – thank you – thank you —- And thank you to Make-A-Wish for making this possible for them.

And We’re Home (aka Going Out With a Bang!)

So, the last few days were not exactly what we had planned … but we’re home now and Emily is doing great -back to her normal, spunky self.

I’ll give a brief recap, just in case you’re lost as to what happened – perhaps because you haven’t read all the posts, have read the posts but didn’t understand them, read the posts and got completely confused with all the changing information, were taken by complete surprise because you didn’t even know she was having her port removed (sorry Gaby!), or you’re like me and you wait until you have all the information before you pay attention(!).

Thursday morning Emily and I checked in at the UC Davis Children’s Surgery Center  one last time so she could have her port removed. Now that she’s completed her treatment, and she’ll only need one lab draw a month (and possibly one IVIG transfusion a month), it’s best to take the port out to reduce the risk of an infection.

Waiting for surgery

Waiting for surgery

We passed the time visiting with all our beloved doctors and nurses while Emily colored on her sheets. We haven’t been to the surgery center since April, and we don’t expect to go back, so it was fun to see everyone and say goodbye. 

Heading to the Op Room!

Heading to the Op Room!

Dr. Abramson, the surgeon who initially placed her Broviac 2 1/2 years ago, performed the surgery to remove the port. All went well, and she was back in Recovery in just one hour.

sleeping anesthesia away

sleeping anesthesia away

As I waited for Emily to awaken, I looked around the Isolation Room and took it all in. We’ve spent many, many days here, and while I’m not sad to say goodbye, I did feel a bit nostalgic. I watched the colored lines and listened to the different beeps of her vitals being monitored, and I thought, “This is the last time she’ll be hooked up to a monitor, the last time she’ll rest in one of these beds.”  (Ha!)

IMG_20140724_113921632

IMG_20140724_114334965

She was a bit groggy when she awoke, but she asked for potato chips, so she must not have felt too bad😉

Her nurses gave her a special card and gift. She doesn’t look excited here, but she really loved it.

Once she had eaten and had a little drink, we said our final  tearful goodbyes and headed out. She couldn’t quite walk on her own, and my arms were full, so she got to be pushed out in one of the new carts (donated by our amazing friend, Kimberly Kaufman at Angels for Hearts).

IMG_20140724_115930275_HDR

We headed straight to the Cancer Center for her monthly IVIG infusion. Our hope is that this was the last one. Now that she’s off treatment, it’s very likely that her body will begin to produce the missing antibodies on its own again, and she will no longer need this extra immunity boost.

All hooked up

Getting all hooked up

She’d had a peripheral line placed in her hand while she was under anesthesia, and she was very careful not to knock or jostle her hand. She just kind of held it out the whole time.

IMG_20140724_133501269

Her transfusion took about 1 1/2 hours, and she was quiet and restful the whole time. She seemed to still be groggy from the anesthesia, so she watched a few movies and relaxed.

Just as her transfusion finished, only 5 grams of the antibodies, and the nurse was setting up her flush (saline to push the Ig all the way in and to clear the line), she started slouching down in her chair. Then all of a sudden she began shaking and crying out that she was cold. Thinking it was simply cold in the room, I sat in the chair and cuddled her in my lap. But her shaking became more and more violent -so much so that she folded herself into a fetal position and cried out that her back HURT! She kept saying, “I’m cold! I can’t do this!” And then I realized she was burning with fever. Her nurses responded instantly. They hooked her up to watch her vitals – her heart rate shot into the 170s, her blood pressure plummeted to 80/50, and her temp measured at 39.5, or 103.1 -they called in the oncologist team, and they pushed in a bolus of fluid (a fast running, large amount of saline to bring the blood pressure up).

At first everyone thought it might be an allergic reaction, but then one of her docs said, “We’ve seen this before,” and they started sepsis protocol (a typical IVIG reaction might not occur for three days). When the bolus didn’t help, they called 911. Within maybe five minutes of the initial symptoms, the paramedics were at our chair. The nurses all worked together to put in a new peripheral line so they could draw blood to culture -to grow and see if she had an infection. Then we were wheeled onto the ambulance and driven (all the way) across the street to the ER.

Once there she was given antibiotics, Tylenol to bring the fever down, and two more boluses were pushed within one hour. Thankfully this all had the effect they were hoping for. Her blood pressure came back into the normal range and her fever subsided -for the most part; we had to help the fever a bit with cold cloths, but it eventually came back down. She also had a chest xray and nasal swab. They wanted to check for any possible infection.

She was really tired and fell asleep quickly. There is no cell reception in the ER, so I sent out an SOS email, and everyone scrambled to make arrangements. Jason had to stay home with Sophia, who had a little bug (not related to Emily), so my mom and Aunt Gaby came to sit with me. She was definitely being admitted, but they hadn’t decided yet if she should go to the general Peds floor or if she needed to go to ICU. Her heart rate was still really high, and they needed it to come down.

Around 11:00 pm, she had another episode of fever and chills with elevated heart rate, but this time Tylenol fixed everything quickly, and it was decided she didn’t need the extra care from ICU and could go to the general Peds floor.

IMG_20140724_162315626

Heading upstairs

As we waited in the ER, and then as we got settled into our room on Davis 7, some of our nurses stopped by to say hi. Of course no one wanted to see us in that condition, but it was still good to see them again.

Throughout the night Emily’s heart rate continued to drop back into the normal range again, and she didn’t have any more fevers or chills. By Friday morning she was already feeling better -tired and puny, but better. Her surgeons stopped in to check on her, then the Hem/Onc team came by to share their thoughts.

That’s when we first heard about the spot on her lungs and the possibility that it might be a fungal infection. But after 24 hours (Friday evening) of negative blood cultures, and no more symptoms, the thoughts switched back to an allergic reaction.

There really is no way to definitely know what the spot on her lungs is without invasive procedures, and those bring their own set of risks, including a greater risk of cancer development. So because the cultures remained negative (by Saturday night they were negative for 48 hours), she remained afebrile for at least 24 hours, all her vital signs returned to normal, and because the symptoms started right after receiving IVIG, which is allergenic, and she had had no signs of a fungal infection prior to Thursday (like a cough), her doctors were comfortable sending her home today. When we see Dr. Ducore in a couple weeks, we’ll discuss the possibility of doing another chest xray in a few months to check on that spot.

Emily was thrilled to head home. She wore jewelry, pajamas, and gladiator sandals -on the wrong feet -and carried her baby in matching pj’s, and walked out on her own two feet.

MG952978

Thank you all for your prayers, compassionate words, and meals! Maybe now we really are done with all of this …

Is THIS the final answer?!!!

Emily  woke up this morning with the beach baby tousled hair!

Emily woke up this morning with the beach baby tousled hair!

Well, we still don’t have any “this is absolutely what happened” answers but Emily is doing well today and can very likely – but not for sure yet(!) – go home late this afternoon. Her first blood cultures have come back negative and if the second one is also

negative today, home may be a reality tonight!

This is what happens when you leave Emily with Grammie  for awhile - Ruffles - best nutrition ever!

This is what happens when you leave Emily with Grammie for awhile – Ruffles – best nutrition ever!

Emily’s Resident MD this morning said again that they think she had a reaction to the IV Ig infusion on Thursday, rather than sepsis, because if she had been septic, she probably wouldn’t have responded to treatment so quickly. When she’s been septic in the past, she’s been very sick for days. This time her symptoms improved within 24 hours and she never needed pressors to get her blood pressure back up. As for the odd finding in her lungs on her chest X-ray on Thursday, they’re not certain it is a current fungal infection, as it could be an artifact (or something left behind, like a scar when you get cut) from a past infection. For example, someone who has had pneumonia in the past will usually have some kind of finding on an X-ray that shows that they had a lung infection in the past. I’ve had pneumonia twice and it always shows up on an X-ray.

And here we have Emily and her nurse, Angela, singing along with Frozen!

And here we have Emily and her nurse, Angela, singing along with Frozen!

I apologize for the back-and-forth of all this information but in reality this blog is a glimpse into the life of one little girl and one huge family with leukemia

and this frustrating back-and-forth is how it goes daily. Unfortunately the doctors cannot see inside of her body and say THIS is what’s going on without doing something invasive like a biopsy or another test like a CT scan, both of which have their own set of risks. Right now, they can see a little girl who has responded well and very quickly to her treatments, and who has shown no other signs of current infection. So her Resident said that they will mostly likely send her home and then do a follow-up chest X-ray to check on the spot on her lungs in the near future.

Princess Emily today - complete with jewelry and  IV lines!

Princess Emily today – complete with jewelry and IV lines!

God continues to show His kindness to Emily! He brought her a special nurse last night, Angela, who has two girls and totally gets Frozen! She even sat down and sang one of the songs along with Emily and the movie! Grammie got a chance to watch three(!) Super Why movies and an entire Frozen movie while Chrissie went home for several hours last night to spend time at home.

Please, as you are already doing(!), keep praying for Emily and Chrissie – and Emily’s doctors – and brothers and sister – and, of course, pray for Jason who has totally carried the home front organization during this hospital stay – from taking care of a very sick Sophie on Thursday to rearranging – very creatively, I might add – his schedule and life to take over while Chrissie is in the hospital with Emily.

image

P. S.

Quick update. One of Emily’s regular doctors just came In. Instead of sepsis, they are thinking that she had a reaction to her IV Ig infusion yesterday. She’s had lots of these infusions – monthly for a year now – but sometimes reactions can just happen. As the doctor said, each IV Ig batch is a mix from thousands of donors so maybe there was something in this batch to which her body reacted. And a typical reaction to it is often increased temp and heart rate, etc., all the symptoms which she had yesterday.

As for the lung X-ray, the doctor thinks that it’s evidence of a past inflammation rather than an ongoing fungal infection. He said that if she remains afebrile today and tonight, she could likely go home tomorrow. Chrissie and I were thinking about the time a year or so ago when Emily was hospitalized for a cough and ended up in the PICU because her oxygen levels were too low -and an X-ray that time showed spots on her lungs.

As always, we may never get a clear answer but for now the good thing is that she is continuing to do well.

Lots of questions and a new wrinkle —

Morning --

Morning —

Emily is doing much better right now. She got shaky cold and her temp want back up to 102 while still in the ER and her heart rate stayed in the 130’s for awhile but her temp is now normal and her blood pressure and heart rate are good this morning. The hospital was swamped last night with both adults and kids on beds in the ER hallways at one point – ER nurses need special prayers – so it took awhile, and a couple of movies, before she was transferred but Emily was able to transfer up to a room on Davis 7, the Pediatric unit, at about 11:00 pm.

The news we have this morning is that a chest X-ray which was done yesterday as part of the standard sepsis protocol showed a small little spot – a “nodular opacity” – in the right upper lobe of her lungs that the radiologist read as a possible fungal infection. A fungal infection would have probably been there for months but Emily wasn’t showing any symptoms and so no one suspected. As we’ve learned along this road with Emily, she’s either well – or she’s very very sick. She has no in-between like normal people. We have no definite answers yet but as of now, it looks like there are two possible scenarios with one for-sure. The for-sure is that this fungal infection has probably been brewing for awhile. First scenario is that the stress of the surgery yesterday coupled with the brewing fungal infection overwhelmed her system and caused the sepsis. Second scenario is that the sepsis occurred for who knows whatever reason and the fungal infection was caught as a side effect. Either way, God is GOOD – because a lung fungal infection in an immunocompromised little girl can be very bad. Right now, Emily is on Rocephan, a broad spectrum antibiotic, and Fluconazole, an anti-fungal medication. The first doctor this morning said she may be here for 48 hours and then treated at home.

We got a surprise visit from Emily's favorite primary nurse, Nicole!

We got a surprise visit from Emily’s favorite primary nurse, Nicole!

On another note, life is different now that Emily is “older” and in the hospital. We’ve had a couple of really quick trips – and not always quick enough – to the bathroom now that she’s potty trained. Also, now that she no longer has her port, she has an IV lines in each arm and that makes it REALLY hard to get a clean nightgown on. I really am not sure why hospitals don’t have Peds gowns that snap?!

We will keep you updated once the main doctors come in —

P.S. Please excuse the errors in these current blogs. I’m having to do them on my Smart Phone – and I am apparently not smart enough to do it very well — Oh, we’ll —

Lip gloss always makes us feel better —

Emily asked Chrissie for some lip gloss!

Emily asked Chrissie for some lip gloss!

So, if you were expecting, as we were, that the next blog would be about Emily’s end-of-chemo celebration party or about how her no-longer-permanent port was removed today, then Stitch has had a bump in the road that has thrown everyone for a loop. She is, as I type this, on a bed in the ER at U. C. Davis.

This was Emily when I/Grammie first got to the ER.

This was Emily when I/Grammie first got to the ER.

Emily went in this morning to have her port removed. Yea!!! That went well – and then she went to the Infusion Room to get her monthly IV Ig infusion, which helps her immune system. All went well with that and then, as they were getting ready to flush the line and unhook her, she started to shake and say she was cold, her blood pressure shot down to 84/59, her heart rate was in the 170’s and her temp was 102.5. They thought it might possibly be a reaction to the IgG infusion but then a doctor came in and said no, we’ve seen this before – as in the couple of times before when she’d been septic. Sepsis is basically an infection that gets into your blood stream. It can overwhelm your body quickly and is a medical emergency. Emily and Chrissie were taken in an ambulance across the street to the ER.

After a couple of boluses of IV fluids and starting an antibiotic, her temp and heart rate have come down and her blood pressure has gone up. The diagnosis is still uncertain but either a reaction or sepsis seem to still be the two choices. Mostly because her symptoms came on so suddenly.

Gaby had to feed Emily her food because Emily has an iV board on each arm to keep her from bending them. Now that her port I'd gone, she has to have iV sticks - but she's a trooper.

Gaby had to feed Emily her food because Emily has an iV board on each arm to keep her from bending them. Now that her port I’d gone, she has to have iV sticks – but she’s a trooper.

Auntie Gaby got here about 9:00 pm and brought food! Emily ate a little and Chrissie and Grammie ate more! Emily is sleepy. We are waiting to get admitted to the Peds floor but the hospital is busy tonight and we don’t know when that will happen. Will have to fill everyone in when we know more tomorrow. In the meantime, please – we didn’t think we’d have to be doing this again – pray for Emily and Chrissie. And pray for Jason, who is home with the other four kids, one of whom – Sophie – has been sick all day. (Emily wouldn’t have caught this from Sophie – Emily’s symptoms came on too suddenly.).

Again, thank you for being there for this family —