Day +18

Well, folks.  We aren't going home tomorrow.

Honestly we had the feeling that it wasn't going to happen. The best scenario now is Wednesday.

Clara's ANC has been up hovering in the 500 range for the past few days. She hit 700 but then dropped down again and was again at 700 today. She also had a fever a few days ago which caused her to need to be back on antibiotics again. Fortunately nothing has grown from her blood cultures. I actually think that the fevers coincide with flair ups of her graft versus host disease. She gets red splotches on her face, back, and chest. They are significantly hotter than the rest of her body to the touch.

Each day they have been scaling back medications that she is getting. To go home we need a majority of her meds to be oral instead of IV (I am not really sure why they need this). They prefer to transition one med at a time to see if she has any reactivity to the oral version of the med so it takes time. We are also scaling back her TPN (the IV feeding source) to a 12 hour IV infusion. This requires a slow transition (I think so that it won't shock her liver/kidneys).

The goal with the TPN transition would be to give her full nutrition at night while giving us the chance to teach her to eat during the days. We could take the alternate route of the NG tube but that makes it harder to swallow and we want to give her the best scenario for learning to eat. Hopefully we can quickly transition to a baby that eats by herself without the TPN (the TPN does cause some issues with organs - we aren't made to get our nutrition by IV).

We are also being delayed because she has procedures that need to be done before we leave. Those procedures are an MRI/CT to observe the status of her fungal infection on her kidney (and anywhere else it may have spread) and to take a bone marrow aspirate to test her new bone marrow. Ideally the new bone marrow is 100% donor marrow but sometimes the host marrow still represents a significant fraction of the remaining marrow. This will help determine the chance of a relapse of the leukemia.

Clara has been mostly tired and irritable (as have her parents). She has had the worst diaper rash immaginable lately that we are treating with a variety of ointments. It has improved over the past few days but has to be very painful for her. It is also obvious that she is bored in her room and would love to be able to move around. She really perks up when we have visitors. I'm sure that she is as ready as we are to finally be home and hopefully stay there!

Day +14: ANC = 500!

Clara's labs showed an ANC of 500 this morning! The doctors say we
could be taking her home as early as Monday!!!!

I'm headed to bed and quite tired just thinking about all that must be
done before we bring her home. However, I had to let you all know.

Additionally, she is less cranky since the lasix really began working
last night. She has become much less bloated and feels much better.
She continues to have a healthy amount of GVH show up on her skin with
minor red splotches here and there that make her a bit uncomfortable.
She is still loosing her hair-although not to worry as it consistently
finds it's way to our mouths.

There is much to talk through with the staff, much to prepare for at
home, and much to accomplish at the hospital over the next very few
days. Please forgive me for posts lacking in detail or frequency in
the coming days although I will make my best effort to share the
coming events with you all.

It really is shocking that we are here. It was just a few days ago
that I feared so greatly for her life and now things seem so suddenly
perfect. I don't mean to be blind to the upcoming potential
challenges, but they so grately pale to what we have been through that
I hardly see them as worth even mentioning or contemplating.

I can't wait to bring my baby home. With all the bells and whistles
and song and noise I can muster.

Day +13: Hair Loss and GVH

Well, as pointed out by my father, we didn't post an update yesterday.

Not much is happening.  Clara has been a little bit on the fussy side which is difficult because she is not a fussy baby.  We know she isn't in pain.  We know she is doing better, because her ANC is 260! But she has only really been happy when her "friends" come to visit.  Those same nurses that make my day, make hers! Oh, and Daddy sure did make her laugh tonight before I left.

She has begun loosing her hair - which is EVERYWHERE!  The last time we went through chemo, she was at the age that she was loosing her newborn hair.  It had nothing to do with chemo. It was slow and fairly insignificant because her new hair grew in as her old hair fell out.  This time, we are all hacking up hairballs.  I'm not kidding.  Unfortunately for Clara, it is difficult because she doesn't know how to clear her throat or swallow or spit out a hair.  So, it starts a gag reflex and she ends up throwing up.

She is retaining a lot of fluid because the conditioning chemo makes her cells "leaky" and the fluid ends up sitting around in random tissues and not being flushed out through her bladder.  Fortunately, I can report that she just had a huge pee under Daddy's watch - which is such great news.  He says she was much happier and seemed to be much more comfortable.

We have heard from the attending that the "allergies" she was having last week seem to be Graft vs Host Disease.  She was hesitant to say it last week because it was so early (her counts hadn't even really come up and it had only been about a week since transplant).  But, her "rash" has changed patterns and it shows up regardless of a Benadryl dose or not.  They are still tweaking her immunosuppresant dose to make sure it keeps it from raging.  But, right now, it is a good amount of GVH and we are only putting topical steroids and hydrocortisone cream on her to keep it from being too uncomfortable as she rashes and her temperature at the rash spot increases.

I need to take advantage of my night off and go to sleep.  G'night!

Day +11: Engraftment

There is so much news!  And each bit of it has such MAJOR implications.  I will try my best to help you all understand the "so what does this mean??" part of it.

• White Blood Cell Count = 0.7 (up from 0.4 yesterday)
• Remember white cells fight infection. And while we didn't have an ANC, it was the only number we had to gauge if she was producing new cells.  If her white cell count continued the trend up, it meant she is producing those all important blood products to sustain life and fight infections!!! This morning we heard from the nurse that she had 0.7, but hadn't seen her full lab report yet.  BUT, we knew that if she is above 0.5, then we have an ANC!
• ANC = 190 (up from nothing yesterday)
• Remember ANC is Absolute Neutrophil Count.  Neutrophils are one of the types of white blood cells that fight infection.  The ANC is a number that we watch a lot and when it reaches 500 for 2-3 days in a row, she can go off isolation restrictions!  This means we can go for walks around the hospital and outside, etc!!!  Technically it means we can go home, but there are other criteria and logistics she has to meet and that have to be coordinated first.)
• Monocytes are another type of white blood cell which we are seeing in the lab report today.  I don't know much about them, but the attending told us this morning that WE KNOW SHE HAS ENGRAFTED because she is producing monocytes!!!!!!!!!

So, this is where we all take a break from the education and scream, dance, laugh, cry, sweat (yes I was almost doing all of those simultaneously during the doctors' rounds this morning), whatever you need to do to get let the joy of the moment of Day 11 engraftment take over your normal, mature, appropriately inhibited self!!!

Ok. So. Guess what else?

We are past the point of worrying about veno-occlusive disease (VOD).  Remember we had been watching her liver enzymes really since transplant.  We don't have to worry about that any more although her liver can still be an indicator for other things.  But this is one BIG thing that we can officially say we have avoided and for which we are "out of the woods!"

So, now begin a new phase of looking for Graft vs. Host Disease (GVHD).  We actually expect to see GVHD, and we actually want a little bit of it.  The Graft is the donor's marrow and Clara is the Host.  Just in case there is one single leukemic cell left behind in Clara's marrow, we want the donor's new immune system to kill it.  Of course, we don't want his immune system (which will be created by his marrow) to decide it doesn't like Clara and gets strong enough to try to kill all of her cells and officially her.  So, we keep an eye out for symptoms and we keep it under control.  They've gotten very good at treating GVHD.

Ok. So.  The BIGGEST NEWS THAT YOU HAVE ALL BEEN WAITING TO HEAR!

If everything goes well...
If her ANC continues to climb...
If her Graft vs. Host Disease arrises, as long as it doesn't become severe...
If she can tolerate some food by mouth...
If she can take many of her meds by mouth...
If she isn't having fevers...

We could go home in 10 days!

Enough said.  REJOICE!

Her white count is 0.7!!

This is up from 0.4 yesterday!! More info coming after we talk to the
attending today.

Day +10: Exciting News!

We have a new attending for the weekend who is very personable and engaging so the words he chooses are simply more exciting to hear than had they come from any of the attending doctors we have had on the BMT Unit thus far.

Even with that in mind, I cannot help but be excited by the conversation we just had:

• "If you were to ask what we would hope for Day 10 to look like, this is exactly it."
• "Yes, it is possible that this is engrafment."
• Her White Blood Cell Count is 0.4 (It could easily be "high" today and go back down to 0.1 tomorrow).
• She is holding on to her platelets and does not need a transfusion like she has the past ~4 days.
• She is a baby and got 8x the normal stem cell donation which truly can result in engraftment sooner than Day 18.
• She is feeling better (can't see mucositis in her mouth anymore although it doesn't mean it isn't in her throat and the rest of her GI tract).

We also discussed that there are still some things to work out: particularly the allergies causing her to rash and her fluid levels.  Rash can be one of the signs of graft vs host disease - so I am particularly glad to have confirmed (in my mind) what was causing her to rash over night (Dilaudid) and to find that Atarex (which is a non-drowsy anti-histimine) does better than Benadryl for Clara when she reacts to a drug.  She is almost rash free and itching much less.  I am going to continue giving her Atarex over the course of the day to help her get past the left overs of all her reactions and hope that we will see a marked improvement today.  If we can get the allergic rashes to stay away, we will be better able to detect potential graft vs. host disease rashes. 

She also doesn't seem to need the pain meds much at all.  I think most of her discomfort lately has been due to reacting to so many things and, if she really is recovering her white counts, then that means any pain she is/was having due to mucositis may actually be gone or gone soon.

Alan is on his way to the hospital for the day and night.  The whole family gets to be together for the weekend which is HUGELY exciting to me.  My baby is sleeping soundly.  It is the beginnings of what I hope will be a very very good day and weekend...and dare I say many days more?

Day +9

Very hard day for me.  Full of emotion.  No energy to really tell the story.

Good news is: there is nothing wrong with her heart.  It is actually in excellent shape.

Bad news is: we are still battling allergies.  She is constantly reacting to something or being medicated to stop the reaction. Plus she spiked a fever twice today.

Hope we can stop it soon - I'm starting to feel allergic just watching her and it hurts to see her so uncomfortable all the time.

Date Night

I am happy to report that Cassi stayed with Clara for almost 2 HOURS(!!!) while Alan and I had a date night at California Cafe. We came back to a sleeping baby with a much happier demeanor, fewer hives, and looking slightly less puffy (although her fluid numbers were still clearly up).

It was an incredible blessing to be able to have that time with just Alan and I.  We haven't been together outside the hospital in 2 1/2 weeks, and we haven't been on a date since mid-November.  I cannot tell you enough how much these nurses mean to us.  Although, I think Cassi might think me crazy after how many times I told her we love her today.  They all pitched in and covered Cassi's other patients while she stayed in the room with Clara because they knew Alan and I were on a date. 

Clara is now sleeping soundly and has been given a dose of lasix to help remove the excess fluid from her tissues.  Hopefully, she will pee a bunch tonight and wake up feeling a little less like "sumo-Clara" and able to breathe a little bit better.  We have been hearing a little bit too much grunting lately which was one of the first things we saw/heard before she became 3 pounds fluid overloaded and had her first visit to the PICU back in September.  I'm sure it will clear up.

I'm off to take advantage of the sleeping baby and quiet hospital room!  G'night all!

Day +8

It's been an eventful couple of days.  After figuring out what Clara's allergy was, we thought things would go back to normal.

Unfortunately, I think we are now at the beginning of a lot of difficult times.  Clara's heart rate increased significantly over the course of the day yesterday from around 130s to as high as 215.  Every nurse was telling us it was probably a fever coming - which it was.  But there was a flurry of concern and ruling out of bigger problems by getting a chest x-ray and and EKG late last night while the BMT doctors were gone and only the hospitalist was here to make diagnostic calls.  She also had an allergic reaction again earlier in the day, this time to platelets. She is also seeming to need more pain meds.  Despite being on a continuous infusion of a low level of dilaudid, we are still having to push the button to give her a bit more.  The doctors increased her continuous rate in the past hour so hopefully we will see an improvement in her demeanor.

For the most part, she was happy and playful yesterday - when she was awake.  But with increased dilaudid doses and a significant amount of benadryl again, she is sleeping a lot or is in a bit of a funky "I want to be awake but I'm tired" state.

The saga continues as she just had diarrhea and broke out into a rash again - during today's platelet transfusion (while I am in the middle of writing this post).

Thank goodness we have Clara's "bye-bye" nurse - who shall now be named: Cassi.  She knows Clara so well, that I can really trouble shoot with her and try to figure out what is happening.  She knows when to alert the doctors or when to just watch and wait to see if some cause surfaces out of the sea of symptoms.  She asks me for input and advises when I need it.  She keeps me calm and steady and I trust her. Thank you, Cassi!

For now, I will sign off with the message that this isn't fun, she isn't feeling well, she is getting so many medications, BUT it could be sooooo much worse.  I hear from another trusted nurse that she thinks Days 8-20 are the hardest.  So, let's begin that new countdown; shall we?  Thus far it's mainly pain management and allergy management.  We can handle that even if it is confusing and scares us that it might be signs of something worse.  So far it isn't the worst.  So we stay thankful and hope the "worst" stays away.

Day +6

Wow! While nobody asked in the comments section of the blog, everyone was obviously concerned about the allergy! I've been getting many questions of concern.  I'm sorry to have worried you all so!

It was a fairly severe allergy in the sense that she continued to react more quickly and more severely with each dose of what ended up being one of her immuno-suppressants (the Ciclosporin). So now the doctors have replaced that with a similar-acting drug called Tacrolimus and she continues to get the immuno-suppressant Mycophenolic acid (MMF).

She had hives (non-raised) each time and she was just soooo itchy.  We would give her benadryl in increasingly larger doses and earlier and earlier in the process of the three hour dose administration.  Poor girl.  Like I said yesterday, she really never complained.  She was always trying to sleep, (cause it was given to her at night or during the morning when she was still trying to sleep) but she never complained.  Her arms would drop as she would fall asleep and then she'd thrash and rub her face with the backs of her hands and then they'd slowly fall as she fell asleep and then she'd thrash and rube her face.  Over and over and over again.  I felt horrible for her.

Her pain continues but it really is minimal.  We are only giving her dilaudid twice a day and it is a very very small dose.

She is making significant headway with standing and walking (as long as she has my hands for leverage).  She gets tired easily so you can't make it too much "work."  But we were playing tonight with her standing on my lower stomach and leaning back and forward and side to side.  She easily adjusts her weight from foot to foot and from hand to hand as she holds onto my fingers.  She squeals in delight as we do it.  Plus, she is doing better and better at lifting her foot to re-place it into a better position for standing. 

She still doesn't roll, crawl, stand up (from sitting to standing by pulling on something other than me), or cruise, but she is making GREAT strides.  I anticipate she will skip crawling and am just happy with whatever progress she decides and is able to make.  When this transplant hospitalization is over, I'm sure she will just amaze us with progress.

Day +5

The days since transplant have been wonderfully uneventful. We have continued to ask ourselves if we are really here, did they give her the chemo, is it working?

Last night was my first night of concern as Clara is having an allergic reaction to something. She is having a hives like flushing of the skin but it is not raised bumps. Last night, it was just on her neck, back and lower back.

Unfortunately, she is having the same thing exactly 12 hours later but worse. It is all over her face, torso, privates, and thighs. She does have a significant amount of itching but, true to her character, is not complaining.

It does exhibit with extreme excitability (she seemed to think she was stronger and was accomplishing more in the crawling/standing skillset last night), and then follows with fitful but long hours of sleep. She was kind of showing both at the same time for a while last night. It is creepy to see her sleeping with her eyes unfocused and open and then suddenly focus on something in the room as if she was actually awake.

Below is a picture of her face and neck at the moment.

Her mucositis is getting worse and they may give us a PCA soon to giver a constant small dose of pain meds. We would be able to just push a button if she needed a bit more throughout the day but it would also keep us from overdosing.  Don't think she needs that quite yet.

We've also been told that this is when her cells will become more "leaky" and we will see more swelling. We will be looking for weight gain due to swelling, fevers due to infection or simply being without any white cells at all in her body, and will be expecting more transfusions of red cells and platelets as her counts are consistently dropping as they die and she has no marrow to replace them.

We are still to far away to really know, but to answer the question that some of you have begun asking, we will not be going home until at least Day +30. That hasn't kept us from anticipating the day and enjoying the countdown!

Wave bye-bye!

There are some nurses who are very, very special to us.  Each of them are special for different reasons.

Today, Clara gave a very special moment to one of our favorite nurses.  She came by the room at the end of her shift to get some Clara time before heading home.  As she left, Clara waved "bye-bye!"  It was the very first time, and it was confirmed by repetition!

And so, "nurse-who-shall-not-be-named-tho-I-know-you-know-who-I-am-talking-about-because-you-know-I-know-you-are-reading-this," Congratulations!  You are someone who we could never forget before tonight.  And, now, you will forever be the one to whom Clara chose to first say "bye-bye!"

:-)

The worst thing...the best thing.

Do you ever worry...if the worst possible thing were to happen to you.  What would you do?

I type this.

With the rhythm of a song.  As if waves rush over me.

I type this.

With the love of a mother.   With the joy of a mother.

How could you ever know?

My daughter is what every daughter is to a mother.

She is more than I can say.

But what every mother doesn't have to fear..with the fright of tomorrow..is will she survive?

She is a fighter.  As if there is no fight.

I love her like there is no love.

Her joy is that of the most pure.

I want to know her.

I want her to live so that I can know her.

She must survive.

Clara's Butterfly Re-Birthday

Yesterday was the most wonderful, exciting, happy day that I could have asked for.  My daughter was reborn!

I can't put into words all of what went into yesterday and how it felt and what it meant to us to have this day happen.  I hope that for those of you who would have liked to have been here enjoyed the video.  It may not be "entertainment" but it was the true buzz and excitement and spontaneity and medicine that happened in that moment of her transfusion.  You can't catch everything that was said or done, but it was our best way to bring you into the actual moments of yesterday.

I also want to share with you what happened with the butterflies.  You may have seen them in one or two of the pictures Alan posted yesterday and in the video.

The butterflies were a very symbolic theme for the day as our little "bug" was transformed into a "butterfly." I spent three days trying to figure out how to mark the day's significance and bring a bit of excitement to the moment that was anticipated to be so anticlimactic. I realized that if we were going to do anything, it needed to involve marking the significance of what so many people have given to Clara and our family.  Although we cannot yet thank the "kid" that I now think to be the greatest of men, I wanted to thank the team of nurses, nursing aids, staff and doctors that have cared for us as family.

As is typical for me, I started a craft project that ended up being much more ambitious than I originally anticipated.  I decided to hand-make butterflies.  With limited time and only two trips to the craft store, I simplified my design and only made enough butterflies for the individuals on service yesterday and last night.

Here is the note that accompanied the basket of butterflies that I placed in the Nurses Workroom:

"As we celebrate this day and the opportunity it provides Clara for new life, we can’t go without thanking each of you for being a part of her re-birth.  We are so grateful for your time, your vigilance, and your smiles.  You truly have made us feel the support of family, and we thank you for choosing to be here with us in this continued journey.

These violet butterflies are a symbol of Clara’s transformation and opportunity for life.  

Please take one as a small symbol of our gratitude for the part you have played in that opportunity.  When you hold it, know that we will forever carry thoughts of you."

I had understood that the nurses couldn't wear anything "cloth" from room to room so I didn't make the butterflies affix-able.  But they ALL decided to wear them.  And when there weren't any safety pins, they ordered some from the hospitals central supply.  Others put them in their hair.

I hear that an older male patient even asked if he could have one since everyone that was coming into his room had one on!  One of the nurses said that they should start this as a new tradition for transplants.  "This is so fun!"

It meant so much to me that what I had wanted to give to them was so much bigger than anything I could physically give.  Yet, as they always do, they made the gift bigger and more important and special and were full of excitement for the celebration that they wore proudly throughout the day!  I will forever be grateful to them for embracing our small token of thanks and making our day so full of such an outward sign of celebration!

A few pictures for your viewing pleasure:

L-R: Lisa, A Transplant Nurse Coordinator; Pam, one of our two nurses for the day; Jessi, a resident; and Dr. Agarwal, the attending doctor and head honcho for the transplant unit

Pam and Kara, our nurses for the big day!

Clapping after someone spontaneously started singing Happy Birthday and all joined in!

All done

Everything is finished now. Clara is doing fine and just a little flushed. The blood pressure meds the docs gave seemed to have helped as well. Now we have to wait!

Transplant Video

Here is the video of Clara's bone marrow transplant! Not very exciting and the quality is bad because it is from Brooke's computer camera. But for those interested in the process, this is the start along with some singing and picture taking.

Transplant has started!

Everything has started off well. We got a total of 400ml from the donor (originally we had talked about only needing 50ml) so instead of just giving her the full draw they spun down the sample to remove red blood and plasma. This allows them to give a lot more stem cells because 400ml is too much volume in total. They have to be careful at the density of cells per volume so they are running slow (we had expected this) and should be done in 2-3 hours. Hopefully the high volume will speed engraftment though there isn't any real evidence for this. The only known evidence is that a low volume slows engraftment.

Getting ready for the transplant with a change of clothes!

Clara says "Give me my bone marrow!"

Our nurses are hooking it up.

And TADA! Here it is... Not very dramatic but amazing!

Hearts

Last night Clara had some issues with high blood pressure and a low heart rate. The stem cell team brought in a cardio doctor for consultation to try to figure out what is going on before they muddy the waters with the transplant. The immunosupressant drug that Clara is currently on is known to cause elevated blood pressure and the body can respond to this with a lower heart rate. I have also found a few articles pointing to the drug independently causing a low heart rate that disappeared when the drug is discontinued. They are going to start her on blood pressure medication to treat the blood pressure.

This is causing the transplant to be delayed until 2pm today. The issue is that the transplant also causes higher blood pressure and lower heart rate so they want to get a good idea of the problem before the transplant infusion begins. We have already had an EKG and will be getting another one soon along with a longer trace of her heart rate. We will keep updates as things progress.

Day -1

The day is almost here. Today some stranger went under general anesthesia and had a huge needle jabbed into his hip so that he could help save a random person's life. All we know about him is that he is an 18 year old male with O+ blood and the same HLA typing as Clara. I don't even think that he knows that he is saving the life of a baby girl or anything about her. In a year we can try to thank him as they will deliver a letter from us to him at that point.

Transplant is set for tomorrow at 12:30 pacific time and should take about three hours. The whole process is relatively anti-climactic. The transplant is given through her blood as a simple transfusion (just like red blood cells or platelets). Afterward it will take a few weeks before the engraftment takes place (when the donor marrow starts to grow and generate blood cells in Clara's bones). Infection is the biggest risk up until that point. Hopefully her fungal infection will stay at bay.

Brooke is making a lot of felt and cellophane butterflies to celebrate the occasion of Clara's "rebirth" in her bone marrow. She is going to put them around our room as well as give some to nurses as a Clara token. While this is a major step in the process though, there is still a hard road ahead with many risks.

Clara is acting very tired during the day. Last night she spent a few hours in my arms refusing to sleep elsewhere. I was finally able to get her down to her bed where she slept pretty solid the whole night. The delay in getting her to bed may have been exacerbated by the national championship game... Tonight she is already in bed and asleep at 7:30. She has had sporadic doses of dilaudid to help with some apparent throat pain. Last night this led to her being active but today she has been pretty relaxed all day. Her blood pressure was also up last night but seems to have come down today. Apparently one of the anti-rejection meds causes this and most patients end up on a blood pressure medication.

Day -2

Today has been a smattering of whining soothed by warm blanket and
snuggle-induced naps.

Clara has been swallowing loudly and rarely goes without her pacifier,
and has the occasional cough. I think we have the beginnings of
mucositis which I wasn't expecting for at least a couple of days.

I've asked the resident for pain meds...here we go with the yucky side
effects of chemo.

Anticipating Clara's New Birthday

Someone proposed we celebrate Clara's transplant day as her second "birth" day.

Any ideas for how to mark this day of new life?  I've heard the actual transplant is completely anticlimactic and would love to find a fun way to celebrate it.  Any ideas on how to continue the tradition each year would be great!

Bring on the first "Day of Rest"!

I am so happy to report a very restful night. 

Clara went to bed a little early - 6:30pm and is still asleep at 9:15am.  Before this readmission, she had been going to bed as late as 9:30pm but never earlier than 7:30pm.  Also "normal" for her is 13 hrs of night time sleep.  We are now approaching 15 hrs.

We did have to wake up every 1.5 hours to change her completely saturated diaper, but she would always settle right back down.  She would place the backs of her hands over her eyes and turn her body so that her fingers would rest on my face.  So precious.

All of the swelling we saw yesterday seems to be gone, and her weight dropped just enough to support that assessment.  I'm looking forward to her IV fluids being decreased by half today and many many many fewer diapers.  We were changing as many as 2-3 an hour to keep the chemo off her bottom.  Thankful to say we have been successful at preventing any diaper rash or open sores which would have been a source for potential infection in the next couple of weeks while her counts are down.

I'm off to have my cup of coffee.  Would love to hear from you all.  The blog has around 300 page views a day and we can get pretty lonely all cooped up in this room way out in CA!

Day -3

Today went very similarly to yesterday.  She seems to have an allergic reaction to the chemo which the attending says is basically unheard of and the resident was trying to explain it as an allergy to another med she is getting.  But the other med she gets three times a day and the chemo she has only gotten one time a day at this exact same point in the morning.  It doesn't really matter because her reaction is short lived and not dangerous...and Alan and I are pretty sure we won't see it happen now that chemo is over.

Let me repeat that...chemo is over.  Wow.  I can't believe it. 

Clara has had almost no nausea since they doubled the frequency of one of her nausea meds.  Plus in combination with another nausea med that she had never had before, it has just been wonderful.  I wish they could/would have given her such good coverage when she was so nauseous with her previous treatments.

Because she hasn't been nauseous, this has seemed to be quite a benign procedure.  We get two days of nothing while we wait for her counts to go down, and then I hear that transplant day is quite anticlimactic.

I was so worried about what was going to happen in these first few days that I hadn't really thought to ask detailed questions of what happens beyond transplant day.  They have told us, but I kind of need clarification.  I know we are looking for Graft-vs-Host Disease which is expected and Veno Occlusive Disease and of course the nausea and pain associated with mucositis. 

So, I suppose I have questions to ask tomorrow.  But for tonight, I am so happy to report a soundly sleeping baby (with the help of some benadryl to settle her after some initially fitful unrest) laying next to me and to share the joy I feel from knowing that we have just avoided so many very scary possible complications.

Puffy Baby

 

We aren't sure what caused what...but since her chemo this morning we have had:

• Inconsolable screaming for an hour
• ativan (anti-anxiety and anti-nausea med) and back massage while she was on her tummy finally calmed her
• Woke up with extreme facial edema (swelling) as if she had had an allergic reaction to something

Fortunately, her fluid levels over all are GREAT.  She has actually peed more than they have given her fluids - which is great news.

She has perked up since this picture and is playing in her Exersaucer.  Our nurse for today (who I LOVE) and another nurse who I have listed on our Primary Nursing request list just came in and entertained her quite a bit.  We got several smiles and even a couple of coos.

We have had one more vomiting since this morning, but completely manageable (haven't even had to change her clothes yet).  Eventful day but not nearly as bad as I was afraid it might be.

Day -4

 

EDIT:  I took this picture this morning.  Clara had thrown up some bile a couple of times already, and we were just about to get her chemo that we KNOW will make her extremely nauseous. 

It is also the one that is dangerous for the bladder.  So, they have doubled the amount of IV fluids she is getting ( to 25 mL/hr) to ensure she pees plenty and flushes the chemo out of her bladder.  Since I am required to change her diaper every 2 hours, I bought her a couple of t-shirts so that tonight she can go "bottomless." I hope it will make diaper changing easier. However, during the day she looks awfully "big girl" in a t-shirt and pants. 

This is also the last picture I have before she had her NG pulled today.  (We didn't pull it yesterday because of the nurse continuing to confuse things by pushing her personal agenda to keep it in.  She said the drs said we shouldn't - so we left it in...but this morning, they were wondering why it hadn't been pulled.  I was not a happy camper after all this "miscommunication.")

Restful Night / Day -5

Clara did throw up around 12:30am. She went right back to sleep and
essentially slept straight through the night. She woke at 5:30 when
she peed through her diaper. After having a nursing she went back to
sleep and hasn't woken up yet or thrown up again.
I've asked the doctors to switch her to TPN which is food through IV.
This way she can breastfeed as she likes but I don't have to keep
filling her upset tummy with food. Their original plan was to remove
the NG and put her on TPN upon admission but I asked them to hold off
as I wanted her tummy to continue digesting as long as possible. There
are still a couple of meds that they are giving her by mouth so I
don't want to pull the NG if they can't turn them into IV meds. We
will see what they say.

EDIT: One med ends in a couple of days and the other can't be put into IV.  We are going to keep the NG, and since she hasn't thrown up again, keep going with the NG feeds.  She's doing okay with the one she's getting right now.

EDIT: Apparently, the previous edit did not include accurate information because it was the nurse's knowledge and opinion.  The Doctors have actually approved NG removal (she ended up throwing up her one NG feed this morning), are moving her current oral meds to IV, and are not starting TPN until after she gets done with cyclophosphomide on Sunday.  They have to be very careful about how much fluid they give her so they don't want her getting any feeds this weekend - oral or IV.

Nausea beginning...

We haven't had any vomiting yet...her stomach is currently empty. But
just as I was about to start an NG feed, Clara began coughing a bit in
the way she does before she vomits. We have just now given her some
Benadryl, and she is asleep peacefully.

The honeymoon may be over. Time to get ready for the hard part.

While we were gone

I am posting this now but will probably back date it so that things make more sense in the future.

I know many of you were looking for updates over the past month while Clara was at home. We were trying to return to a bit of normalcy and ignore the fact that we would be returning to the hospital at the beginning of the year. Part of this was our constant putting-off of any blog updates. So, sorry for those who were hoping to hear what was going on and I will be making a brief post to cover what happened in the month of December.

Clara came home after her lung surgery on November 26th. She had to go to the hospital every day (except Sunday) for one of her fungal medications (amphotericin) that needed to be monitored as it was administered. Each night she received another fungal medication (mycafungin) through her IV line at home using some sort of "gravity ball" but I think it uses pressure to deliver the medication. She was also receiving daily doses of a chemotherapy drug called tioguanine to help keep the leukemia at bay while allowing her to fight the fungal infection. She also had two short rounds (4 days) of cytarabine (this is the one she has had before) to help keep the leukemia down.

Unfortunately, the last round ofcytarabine knocked out her immune system too much and left her neutropenic. That is, her neutrophil count was getting toward a more dangerous level and she was at higher risk of infection again. After this, we stopped all of the chemo treatments to let her recover (which she did) and didn't have any chemo through Christmas and New Years.

Right before Christmas week, our garage flooded pretty badly. We had finished the garage with paneling and carpet and were using this area as my home office, laundry, storage, and had planned to use it as a play area before Clara got sick. We were able to get everything dry pretty quickly and nothing was damaged. Our landlord immediately had people working to drain the water away from the garage and has some more long-term plans that she will be putting into effect soon. Unfortunately, we discovered a little patch of mold after this so we had to keep Clara out the the garage to keep her safe. We will be having someone come and test the house to make sure that it is ok for her to live in after the transplant while her immune system is weakened. Out landlord has already assured us that she would be ok with a move out because of the water issues that the property has been having.

So the plan for the transplant will be to go to the hospital on January 2nd and to start drugs to help alleviate some of the reactions to the chemotherapy that she will be getting. Then the 4th-7th she will be getting a drug called Busulfan and then the 8th and 9th a drug called cyclophosphamide. She will then get a day or two of rest and then the transplant on Tuesday or Wednesday (probably Wednesday) depending where the donor lives. We can then anticipate a few weeks of waiting for the new marrow to take hold and start producing it's own blood cells. During that waiting we have the risks of negative effects of the chemo on her liver and kidneys as well as risk of infection from new sources and the current fungal infection that she has. After the graft takes place we have risks of Graft-versus-host disease which will hopefully be minimized from the good match. Wish us luck!

Standing! All By Herself!

Day -7

Yesterday was a great day for us.  Alan has taken the past two nights' duty at the hospital which made the day time yesterday much more fresh and easier to handle.  Right now, Clara is doing GREAT.  She is not having any nausea or fatigue.  She even breast fed a little bit more than usual during the day.  I was so proud of her. 

She is showing signs of recognizing certain words and hand signs that I have been consistently using: eat, sit up, stand up, dance, night night.  It is great to feel like we are actually communicating a bit.  Hopefully, she will start using signs back at me - whether they are ones she makes up and I recognize or her copying the signs I've been using doesn't matter to me. 

She has to do "oral care" 4 times a day.  It is basically tooth brushing when you don't have teeth.  We soak a pink sponge on a lollypop stick into salt water and wipe her gums with it.  The sponge is mint flavored, which I assumed she wasn't going to like as that is kind of a strong flavor for a baby.  Turns out, she LOVES the thing!  In fact, it is the only thing I have seen her open her mouth in anticipation of putting it in her mouth.  She hasn't done that yet with solids so I am soooo impressed with her.  It sure does make it easy to do the 4x daily mouth swabbing.  I hope that once she has the mouth sores, she will still like having it in her mouth.  Occupational Therapy says that, at her age, she is missing the oral stimulation that is associated with different textures of solid foods.  So, she loves this sponge thingy.  We are going to use it to continue moving forward with solids as long as she is up for it. (We anticipate the nausea to start this weekend.)

The only other big news is that the Busulfan levels (the chemo she is getting right now) we a little low so we have bumped up the dose she is getting.  We will not be drawing new levels to send of to Seattle however.  They are just assuming this dose will be effective.

Looking forward to another day with my daughter.  I need to switch the laundry over and head into the hospital.  I can't wait to see her face when I arrive.  She got very excited and actually gave me hugs and snuggles for a few minutes after my arrival yesterday!

Day -8

It was another rough night last night. Clara behaved similarly to how
she was before we were first discharged in November-wide awake and
full of energy between 12-4am. Crazy girl. I've never seen here shake
the Exersaucer so hard and fast! Actually made me laugh despite my
sheer exhaustion. We both slept soundly from 4-8:45 so we did get some
solid sleep. I had her in bed with me though since I had discovered
her at midnight laying sideways with blankets askew and her IV lines
completely tangled around her. Made me too nervous to put her in the
crib while I slept.

We've had a good day. Busulfan chemo started this morning and they
have been drawing blood every 15-30 minutes since 9am. We only have 3
draws left for the day however and they are an hour apart. It puts her
way over her daily blood draw limit and I understood they will do
these draws every day through Friday. There is some confusion on that,
and I'm concerned it will force her into getting more red cell
tranfusions.

She's napping now; so I'm going to try to join her.

Day -9

I'm not sure how much we talked about "Day"s during her previous treatments.  So, I'll reacquaint you.  The day number is very important.  It is what everyone refers to when looking at her very specific protocol and administering her meds.  In total, they refer to it as her road map, and we look forward to certain things happening once we reach "Day X" or "Day Y."

Today is Day -9 which means we are 9 days away from transplant.  On Day -9, two big things happened:

1. We are getting Dilantin at 8am and 8pm which is an anti-seizure medication.  This drug has lasting effects and prepares her for the chemo she will get on Days -8 through -5 which are known to cause seizures.  Dilantin has apparently come very close to completely preventing seizures.
2. She got a single dose of IVIG.  It is basically a bunch of antibodies from over 1000 blood donors that boosts her immune system so that she is a bit more protected from the world before we wipe out her bone marrow. IVIG acts similar to blood products (red cells, platelets, etc) so we were on the look out for her to react in an allergic manner to it.  They "pre-med" her with Benedryl just incase and start out giving the IVIG slowly and continue to ramp up the rate as long as she does well.  

She DID have a reaction and it was a bit frightening for me because it has been 5 weeks since I've had anything that actually needed reacting to.  I thought she was just tired.  We had had a ton of people in the room (the dietitian, OT and PT, the attending and the resident, the deacon, Dr. Dahl and an undergraduate to whom he was showing the different types of patients they treat here) and I had assumed that she was just ready for a nap.  We didn't get the best sleep last night and it was nap time.

But as she was "trying" to fall asleep, I realized that she was really grunting and bearing down a fair bit (assumed possible constipation), and then that her arm was kind of shaking.  Even when she has had screaming fits for an extended period (which is very infrequent), I've never seen her shake/shiver/tremble.  I picked her back up and realized her entire body was trembling.  It wasn't the reaction I was expecting to the IVIG, but I knew now wasn't the time to be "tough" or assume things are fine.  So, I pressed the nurse call button.  The nurse immediately confirmed that she didn't like that Clara was shaking and gave her a double dose of the Benedryl.  I don't know how long it took to work, but as I watched her high heart rate, her temperature fall and then rise again, her continued shakes that she was trying so hard make stop, I was so glad I pressed that darn button and the nurse knew what to do.

She is doing fine now.  Her temperature is still a bit high although not alarmingly so (100.3ish).  Her blood pressure is normal. She has been playing in her bed and in her Excersaucer and then took a nap.

OH!  Perfect timing!  She just woke up!  Things will get crazy tomorrow.  Pray for a good night!

The "easy" night was rough.

Well, we were admitted yesterday evening under the pretense that it would make starting everything on Monday morning more efficient - so we were expecting to have the evening and night to simply reacquaint Clara to the hospital surroundings. Turns out we actually got to do so many more fun things: two chest xrays, a bagged urine collection (which they told us about after 10pm), blood draw labs, 4 IV meds, and a new oral med. That only complicated the fact that Clara missed her 5 o'clock nap and took one at 7 instead only to wake up at 8 and stay awake until 10:45. So it was quite a bit more than a simple reaquaintance to the unit.

I'm not sure if any of that had anything to do with Clara yelling out in her sleep every 3-15 minutes until 6 am. It was the oddest thing. She was sleeping for the most part but restlessly. So that made my first night back less than restful. And now that we are on the transplant side of the unit, everything is by the book. So if there are any meds on her IV pump, the nurse has to check it hourly - bah.

All checked in!

Today is the day

It's my last morning at home with Clara and Alan.  We go into the hospital this evening.

It's been a great weekend.  I got a lot done yesterday: freshly washing all of our clothes, and packing Clara and I.  So now the only things to do today are sterilizing her toys (we will be leaving all her stuffed/fabric toys at home since they can't be sterilized), sterilizing my toiletries and toiletries bag, and cleaning up the house (packing away all of her stuff and putting them in her room so that they aren't scattered around the house while she isn't even at home.

It's kind of odd going through these steps.  It is almost like we are packing for a vacation or for moving.  We've pretty much depleted the fridge of everything fresh in anticipation of eating hospital food, frozen dinners, or out at restaurants for the next month.  And the process of putting everything of hers into her room is a big reminder of when she was first diagnosed and we kind of chose to hide "her" from us in the house so that when we would occasionally sleep at home at night there wouldn't be so many reminders that she wasn't here - and might not be coming back.

This time, it's a little bit easier.  We've lived at the hospital before and for a (hopefully) much longer period.  Cleaning is always nice for me because it restores order in the house and calms my OCD mind. Plus, I am really hopeful that this is the last time we will have to have a long-term admission to the hospital.  It is easily possible that we will have daily therapy in the Day Hospital after this is over.  And, we know we will have at least 2-3 visits to the clinic for the first 6 months or so after transplant as we fine tune her immune system.  And if she ever has a fever (which we anticipate could easily happen over the next couple of years), we will be in the hospital until she has gotten a course of antibiotics and is no longer feverish.

But, despite all the work we've had to do to prepare this weekend.  It has actually been very relaxed.  Clara is continuing to amaze us with her growth. She was hardly sitting up on her own when we were discharged at Thanksgiving, and now she is pulling up to stand, and really enjoys crawling over Alan and I in bed in the morning although she has yet to find much success at crawling on the floor. Watching her continued growth gives us the courage to believe that will continue when transplant is all over and done with.

I must get back to my tasks, but wanted to at least update you all on the current events.