Monthly Archives: November 2012

Emily made it to Maintenance!!!

Stitch, our Survivor!

Nine-and-one-half months – ten hospitalizations – and one recent battle with sepsis later, Emily has finally made it to the Maintenance phase of her leukemia treatment. It was supposed to take four to six months to get to this point but Emily does everything on her own schedule. This (last) part of her treatment should last until July 2014.

Recovering back downstairs on Davis 7 after her 5 day stay in the PICU for Sepsis

When you say the word maintenance, you think of something easy-going – like you’ve gone through the worst part and now it’s an easy coast to the finish.  In this case, it’s not quite going to be that easy.  This phase consists of three-month cycles and Emily will have a spinal tap and intrathecal Methotrexate (chemo injected into the spinal fluid) in months one and two of each cycle.  She will get IV chemo (Vincristine), and an IV antibiotic (Pentamidine), once a month.  She’ll get oral chemo (6-MP) every day and oral chemo (Methotrexate) every Tuesday.  Chrissie gives her the oral meds at home and then she takes Emily to the Infusion Room at U.C. Davis for the IV treatments.  On top of all of this, Emily will get an oral steroid (Prednisone) for five days, once a month.  No one is looking forward to having Emily-on-steroids again but it’s one of the things that will help her beat this.

After no appetite for a week and a 2 lb weight loss, cookies for breakfast, lunch, and dinner are fine by Mommy!

During this whole process, she will get weekly labs done to check her ANC level – the marker of her immune system’s infection-fighting ability.  The doctors want to keep her ANC between 750 and 1500 – low enough that her body won’t fight off the chemo and will allow it to work but high enough that she won’t be constantly getting infections.  If her ANC falls outside of these parameters, the doctors will adjust her oral chemo doses to get it back.

So, this is where Emily – and Chrissie and Jason and the kids – are at right now.  Happy to be in Maintenance and hopeful life will return back to (the new) normal – praying that there will be no more hospitalizations – trying to get ready for the Holidays and wanting them to be joyful and fun – and peaceful.  Thanking God that He is there for them – and that they have this beautiful, feisty little fighter in their lives.  Please pray for all of them — we know

Working on a turkey craft with our favorite Child Life Specialist, Amber

you will – and we thank God for all of you.

 

 

 

Totally un-related (and late) picture! Emily was Minnie Mouse for Halloween.

All the kiddos: Pirate William, Ninja Adam, Jedi Ethan, Minnie Emily, and Kitty Cat Sophia

I am outta’ here!

Last night, in anticipation of being able to go home today, Chrissie and Grammie – and Emily – set up a movie night with the makings for banana splits, from the hospital cafeteria, and a movie, which we checked out from the Child Life room. It was makeshift, but was thoroughly enjoyed by all!

Emily was discharged today!  She had her last antibiotic dose at 1:00 pm and walked – literally! – out of the hospital about 2:30 pm.  Emily’s ANC had decreased from 1160 yesterday to 990 last night but that is still a good number.  She had a good appetite today, for the first time in awhile, and was smiley and mischievous, as only Emily can be!  Chrissie figured today that this is Emily’s tenth hospitalization this year – and we are praying that it will be her last.  She sees her Oncologist on Monday and is supposed to start Maintenance this week or next, if her counts are good.  There will be a post this week about that, once we are sure about when that phase of her treatment will start.  As for Chrissie and Emily, they were very happy to head home to reunite with Jason and, as Emily would say, “her boys,” and Sophie.

Emily insisted on walking out on her own – a little wobbly after ten days in the hospital – but she had outfitted herself with her hat and Tutu Bear and her bag – and walked all the way out to the parking garage.

The music of waiting —

The Child Life Department has allowed Emily to have several musical instruments in her room, since she can’t go into their room. Yesterday, while Bapa was visiting, she asked him to dance with her – and that is what they did!

Emily was finally able to move back to the regular Pediatrics floor on Wednesday night, three nights ago.  Yea!!! Her blood pressure has remained stable and she has had no more fevers.  The doctors are keeping her here to make sure that she gets a full ten-day course of the three antibiotics on which they have her because they don’t want whatever organism invaded her body to come back.  This time, as with many of her hospitalizations, they have not been able to isolate the organism, but they have been able to treat her symptoms and support her body until she is well enough to go home.  As of yesterday, her ANC/immune system count is 1160!  Her doctors are planning on her – and Chrissie – to be able to go home this afternoon(!), after her 1:00 pm antibiotic dose is finished.

U.C. Davis students were here today, helping the kids to make Thanksgiving turkeys out of their handprints! They brought all of the fixings into Emily’s room so she could also create. They were also here to promote a dance marathon they will be doing in January to raise money for the Childrens’ Miracle Network.

To give an idea of how long this hospital stay has been, Grammie left the hospital Thursday morning in order to keep a couple of appointments she had already scheduled – and then stayed at home that night – (just cannot say enough good about long, hot baths!) – and returned yesterday morning to hear Chrissie say that Emily had been asking, “When is Grammie coming back home?”!

Emily LOVES music and actually has a real, natural rhythm – and she actively participated when Kathy came in for a private concert today!

She’s a survivor —

So, the word from Emily’s doctors today is that they want Emily to be on antibiotics for a full ten days.  Since all three antibiotics are given by IV, that means she has to stay in the hospital.  Her doctors are being extra cautious because they believe it was a bacteria in her blood stream that caused the episode of low blood pressures, which is what landed her in the ICU.  She did also have a Rhinovirus, but the doctors say that wouldn’t have caused the decrease in blood pressures, it basically just causes a common cold.  Since a specific bacteria didn’t turn up in her blood cultures, they are giving her three antibiotics in order to kill whatever elusive culprit is behind Emily’s symptoms.  If they stop the antibiotics too early, then it could come back to cause problems again or could start to develop a resistance.  We are all for playing it safe with Emily, even though it’s not comfortable for either her or Momma.

A tuckered-out Emily, after throwing a major protest – see below!

As for Emily’s response to all of this, she is feeling better and so her bed and hospital room are starting to aggravate her.  She woke up this morning and for no reason other than that Grammie decided to uncurl her fingers from around the IV tubing on which she was yanking, she went into full tantrum mode and decided that if she couldn’t pull on the IV, then she didn’t need a diaper.  So off the diaper came and Momma had the fun of nursing a very dangerous Emily!  Have to say that Momma has great patience!  In the end, after nursing and a new diaper and calming down, Emily looked up at Chrissie and said, “It’s all good.”  And Chrissie responded by saying, “You’re a survivor. Your feisty, stubborn spirit is making you a survivor.”

Kathy, the Child Life Music Therapist, came in again today and Emily really enjoyed accompanying her while we all sang! We can only hope that all of the support people in this hospital understand what a wonderful service they provide for these sick children and their families.

Even Emily’s nurse participated in singing, “The Wheels on the Bus Go Round and Round!”

Busy day in the ICU

Emily decided yesterday that her food of choice is hot dogs! She dives in to them – literally – takes two bites, then is done – but she’s very happy!

So, as you can tell by the title, Emily is still in the Peds ICU – but now she’s only here because they don’t have an empty room on the regular Peds floor – and we are fine with that as the reason for still being here.

Emily’s Aunt Rhoda and Uncle Mike were her first visitors of the day!

Emily’s viral cultures came back positive for Rhinovirus – so Emily seems to have been felled by the virus that causes the common cold.  As Chrissie said, it’s a wake-up call as to how very serious Emily’s low immune system can be.  For everyone else, the virus makes you sniffly and achy and feeling bad for several days – for Emily, she ended up in the ICU.  However, the doctors this morning said that they don’t feel they can attribute all of Emily’s fevers to Rhinovirus – and that that virus shouldn’t have caused the drop in blood pressures that she had – so they are thinking she might have also had a bacteria in her blood stream. For this reason, they are continuing the three antibiotics which she is already on.

Aunt Dawn also popped in to say Hi! and bring some special gifts to Emily.

As of this morning, the plan was that she would be transferred back to the regular Peds floor today, when a room was available.  If she runs any temps today or tomorrow, they will do a CT scan and also consider starting an anti-fungal med, just in case, since the fungal cultures take weeks to come back.  She ran a temp once last night – although it decreased on its own, without Tylenol – and she hasn’t run any more today.  She has been much perkier today and is right now “reading” toy catalogs and climbing all over her bed – or trying to, anyway.

Kathy, a Child Life Specialist, came in to do a special concert for Emily! And Grandpa – aka Bapa – was there, also!

Aunt Renee stopped by, bringing some much-appreciated salads for us, along with some gifts for Emily.

She had a very busy day today!  She was watched – or maybe the correct word should be “entertained!” – by Auntie Jennifer and Grammie, while Momma spent the day with Emily’s brothers and sister at their home-school group.  She had several visitors, all of whom were much-welcomed – and appreciated – by her two-person entertainment crew.  And now she is peacefully – finally – relaxing to sleep, tucked into her bed, next to Momma, while sharing a movie on TV.

To top off an already-full day, a group of employees from Ikea came by the ICU floor today, with their arms stuffed full of stuffed animals, and let Emily pick any one she wanted. She, of course, picked the largest elephant! Auntie Jennifer came late on Sunday and was able to stay over an extra night last night, but had to leave today. Emily – and Chrissie, loved seeing her!

The end of the day —

Well, scratch my scales!

The response to yesterday’s post has been awesome! It feels like a blanket wrapped around Emily and her whole family – warm and cozy and uplifting.  Thank you all —

Emily, all snuggled into her IUC bed this morning.

Emily is still in the PICU – Peds Intensive Care Unit, but she is doing better than she was yesterday.  Some symptoms are better and some are still being watched.  She is still running fevers but they are not occurring as often and not going as high.  The norepinephrine dose was increased again (for the second time) during the night because her blood pressures were continuing to be low – but her pressures were good all morning and the doctors stopped the medication completely about 1:00 pm – and so far(!), her pressures have remained good.  Her heart rate has been better today but still runs in the 130’s at times.  Her respiratory rate still seems high at times, when you would think it wouldn’t be.  The vancomycin antibiotic dose was increased because her tests showed that the level of the medication in her blood was low. She received a transfusion today because her hemoglobin was 8.1, which is really pretty good for her but was less than this past Tuesday so the doctors are playing it safe – and were also hoping the extra fluid volume would help boost her blood pressures.  All blood cultures are still coming back negative.  The viral cultures won’t come back until sometime this week.  The doctors said that her counts are trending up – and her ANC was 220 today, which is good.  It has been down to zero – and they like it at 500 for good infection fighting but will let her go home sooner than that sometimes if everything else looks good. There is a pretty good chance that she will be able to move back to the regular Pediatrics floor tomorrow, but she’ll probably not get to go home for another few days.  The doctors want to see more things trending upwards and remaining stable.

In spite of all of this, the real Emily – the reason she is called Stitch – is still there! Last night, she showed her nurse what a full-on two-year-old tantrum can look like.  Of course, Pediatric nurses have seen them before, but Momma and I were a bit embarrassed.  She decided that she had had just about enough of tubes and lines and blood pressure cuffs and oxygen monitors (little though they may be) and she decided that it was NOT a good time to change her diaper!  And so she screamed (and I do mean screamed) and straightened and stiffened her body and managed to put her hands everywhere you needed to have yours – and even though two of us were finally able to get a dry diaper on her, she slept naked (except for the diaper and lines and monitors, of course) for the rest of the night because a mini hospital gown was NOT going to go onto her body – no matter how bad you might want it there!  Her poor nurse just stood there and watched – and assured us that she had seen it before!  (And to keep the record straight, she would have helped if I hadn’t been there to help Chrissie – not that you could call it help.)

And for the other side of Stitch – we have been watching many Barbie Princess movies – which, if you have kids, are actually not bad.  The Rapunzel movie has a very cute, small, purple dragon who has a favorite saying, which Emily picked up rather quickly.  Today, while I/Grammie was watching Emily for a few hours, and Emily was just sitting in bed, she all-of-a-sudden said, “Well, scratch my scales!”  And THAT is our Stitch!

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Chrissie had left for a few hours to help her other kids with their school work and to get them clothes to take to Auntie Gaby’s for the week – and when she walked into the hospital room, she was totally surprised and happy at seeing Jennifer!

And, on another really good note, Auntie Jennifer made a surprise visit from Tulare, a 3 1/2-hour drive to here, because she needed to be here to support Emily and Chrissie.  She can only be here for a day but sometimes that’s enough to soothe a sister’s worried heart.

Auntie Jennifer helped Emily make diapers for her doggies!

Please pray —

Bapa and Emily, enjoying a moment when she was feeling better.

I will try to make this short – especially since I just typed a whole blog post and then did something dumb (which is not unusual for me on a computer) and managed to lose the whole post.

If you’ve read the previous blog, you know that Emily was admitted to the hospital on Wednesday night because she was running fevers.  She is still here.  She has continued to run this roller-coaster of fevers where she gets tylenol, then feels better for an hour or two, then spikes a temp again of 102 or 103 or higher.  She’s been doing this around-the-clock since she was admitted.  The tylenol is now prescribed every 4H instead of every 6H . The doctors started her on the antibiotic, Ceftazidime, and when she continued the fevers,  added Vancomycin and Gentamycin, in the hope of covering whatever bacteria is invading her system.

On top of this, her blood pressure has been running low – as low as 75/29 at one point last night.  Chrissie said her normal blood pressure is around 98/60.  Yesterday/Friday, she was given blood, for a hemoglobin of 6.8, plus a bolus of IV fluids.  In spite of this added volume, her pressures remained low so the doctors ordered a second IV fluid bolus last night – and then a third, which was actually pushed directly into the IV line rather than set up on a drip.  None of that helped her and there were many, many visits into the room by nurses and doctors.  It was finally decided that she might need medications called pressors, which raise the blood pressure, and that in order to do that, she would have to be moved to the Pediatric Intensive Care Unit (PICU) where she could be monitored continuously.

Just transferred to ICU.

She was transferred to the PICU about 6:00 am this morning.  It was obvious how puny she was feeling when she allowed the nurse to attach a blood pressure cuff, oxygen saturation monitor (she hates these(!), even though they are just a little band wrapped around a finger or toe) and leads for a monitor to continuously read her vital signs.  When her blood pressure stayed low, the doctors ordered norepinephrine, a pressor drug, to raise her blood pressure.  Her pressures came up for awhile but just in the last hour started to run low again and they have upped the norepinephrine dose.

Emily, in one of her feeling-ok times, coloring with Momma.

When you see Emily in the above picture, these are all of the IV pumps and drips and vital sign monitors to which she is hooked up.

In the meantime, the fevers have continued and the Vancomycin has been changed from a periodic to a continuous IV drip.  All of her blood cultures – and there have been many – have come back negative so far.  They ran more labs today, to check for multiple viruses.  If her fevers and pressures don’t improve in another few days and everything else continues to be negative, they will start to test for fungal causes.  The big concern is sepsis, where the bacteria, or whatever organism, gets into the blood stream and causes an infection throughout the body.  So far, that doesn’t seem to have happened.

So, that’s the “short” of it.  Please pray that the doctors find the cause of Emily’s symptoms and are able to achieve a cure.  Pray for Chrissie, who has had almost no sleep and who is worn-out beyond belief.  Pray for the doctors and nurses, who are all keeping a very attentive eye on our little girl, trying mightily to determine the cause of her symptoms.  Pray for Jason, who is worried but has to continue to work.  Pray for Gaby and Jay, who are keeping the other four kids at their house this weekend and probably into most of next week.  Pray for the large network of people who will hopefully be able to take care of the kids during the days this week.  And please pray for the kids – Ethan, Adam, William, and Sophie – who are again having to give up their own beds and routines – and Mommy – because of Emily’s illness.  And, in the meantime, we will pray for all of you.

Firsts – and not-so-firsts —-

In the ER with Momma.

First, the not-so-firsts — As can be seen by these pictures, Emily was admitted to the hospital last night.  Again.  She’s been feeling puny all week.  Lot of bruising.  Eyes puffy.  Low platelets, which remained on the low side in spite of a couple of platelet transfusions.  Hemoglobin was also low, so she’s had a couple of blood transfusions.  She started running temps in the 100’s on Tuesday afternoon – and Chrissie began thinking – a nice word for worrying –  that Emily might have to be hospitalized.  Her temp, however,  on Wednesday morning was 98.2 so we all hoped that just this once, maybe the fast track to the hospital would be reversed.  Unfortunately, Emily woke up from her afternoon nap with a temp of 100.1.  The rule is if she has three temps in the 100’s in a 24H period or one temp over 101.4, then Chrissie has to call the Oncologist.  That’s what Chrissie did and the verdict was that she bring Emily to the ER – now.  Even though the hospital is a good thing for Emily’s care, it does feel like a verdict to a Momma who has to put her life and plans on hold – find child care – and take her sick daughter to the hospital for who knows how many days.

Entertaining herself in the ER, with her doggies, given to her by her big brother, Ethan. Another big brother, William, had wanted to send his favorite stuffed animals to the ER with her, but that would have been too many. Momma told him, next time!

The scramble began.  One Grandma – Rebecca, Jason’s Mom – bless her! – drove to the house at a moment’s notice to watch the other four kids until Jason got home from work.  Auntie Gaby drove to the ER after work to bring rescue chips to a hungry Emily, who was now feeling MUCH better after getting a good dose of spiked tylenol!  Emily had arrived at the ER with a temp of 101.1 – and apparently had been feeling so bad that after the tylenol dose, she came alive!  Very alive!  And one other Grammie – Genie, Chrissie’s Mom – packed up an overnight bag and drove to the hospital to give a hand, and some company, to a very tired and sad Chrissie (see further down for explanation).

Emily got to the ER about 7:00 pm and we were able to be moved to a room on the Peds floor a little after midnight.  Emily has to have an isolation room, so sometimes they have to scramble to get one for her.  Her temp went up to 102.7 during the night – then down with Tylenol- then up again to 100.8 during the afternoon.  The spiked tylenol (our term – it really is just tylenol) again did the trick and she felt much better for a while, but she is slowly getting warm again, so this could be a roller-coaster night.

Emily, all set up like a Princess, in her first ever big girl bed! Her big sister, Sophie, has a big bed and so now it’s Emily’s time!

Now, for the exciting First! — Emily got her very first Big Girl bed!  In the hospital, of course, but you have to start somewhere! Up until now, she has had a crib when hospitalized, which she never slept in, so the hospital staff thought that since she’s two she would do well in a bed, and they had one all set up for her this time.  Chrissie is really really happy about this because now she can sleep with Emily in a bed, which is a ton more comfortable than a bed-chair.  And the rest of us are really really happy because that means we can sleep in the bed-chair, which is a ton more comfortable than a camping mat on the floor.  Yea!

A very(!) happy boy, arriving at Denny’s for his special date with Momma.

Now, for the rest of the story — Chrissie tries to do special things for her other kids, as any mom does, but she especially wants to do it because Emily’s brothers and sister are always having to give up outings and movies and family times when Emily has these sudden hospitalizations.  And having Mommy there when they wake up.  That is a huge thing.  This time, Adam, who is nine, had done all of his chore chart – and so Chrissie had promised him that she would take him out for an evening at Starbucks and watching a movie on a laptop.  Chrissie had made a special trip to pick up Auntie Elisabeth’s laptop – and Adam was home, taking a bath, with his clothes laid out for his special date night.  Chrissie had called the Oncologist’s nurse before she left the house about Emily’s rising temps and had gotten the call while gone that Emily needed to be brought in to the ER – now.  Chrissie called me/Grammie, crying because she was going to have to go home and tell Adam that their date night wasn’t going to happen.  When she did, introverted Adam locked himself in the bathroom and cried and cried.  And Chrissie cried and cried on the way in to the ER.  Much discussion was done among Chrissie, Auntie Gaby and Grammie and the plan evolved that Grammie would stay with Emily while Chrissie left to wake up Adam and surprise him.  So, after we got up to the room and settled, Chrissie left the hospital at 1:15 am.  She drove home – woke up Adam and had him change into cozy pajamas – and drove a very excited and very smiley Adam to a 24H Denny’s in Elk Grove.  She apologized to Adam that they wouldn’t have time to watch a movie on the laptop – but he just smiled and said no problem, he would tell the movie to her.

Retelling Madagascar 3!

No words are needed!

So he proceeded to spend an hour reciting Madagascar 3 – scene-by-scene – over hot chocolate, with whipped cream(!) and pizza.  Followed by an oreo cookie milkshake!  Truly a little boy’s heaven — And Chrissie got back to the hospital about 4:00 am, a very tired but much more peaceful Mommy.

The end of the story —–