August 5, 2012
Day 13

Things over the past few days have been much the same... lots of sleep.

Sleep is a good thing because it will help the body recover quicker and if she were awake more, she would just be in more discomfort.

The rough part is that every time she awakes, she vomits.  

Not so much but combined with the mucositis, it is really painful and it is easy to see that she is uncomfortable.

Just today, we noticed an ulcer on her anus and now, when she has a bowel movement, she becomes almost hysterical.

This is really not something that a 3 year old needs to be dealing with.

We are now seeing Manue smile which is a super good thing.  Since the first time she smiled, she had always been one to have a smile.  When the smile is not there, it is upsetting because she's not feeling so hot.

Today when I arrived, she had enough energy to play hide and seek with me - even if she was just hiding under a blanket while sitting on Jessica.

It was fun and encouraging to see.

I was surprised to learn that Manue is in really good shape, considering.  

Many of the kids that receive bone marrow transplants are in super rough shape - morphine all the time plus some other ones to help deal with the pain.  

I can't even imagine what it must be like for the parents of those kids and more importantly, what the poor kid is going through.

I get really angry when Manue is in pain.... not so sure how I would react if she was in more pain than what she is already experiencing.

August 2, 2012
Day 10 (10 days after the transplant)

Two days ago, Manue started to have fever and the dreaded mucositis became apparent.  It is crazy because she went to bed in good condition and woke up in rough shape.

In the morning, after a sleepless night, she received her first dose of morphine.  She had been restless, shaky, and visibly uncomfortable and 15 minutes after the injection, she had somewhat returned to her normal self.
She was pretty tired from all the discomfort during the night that she fell asleep soon after the dose of morphine and pretty much slept all day.

At one point during the day, her temperature had increased to 40.3 degrees celsius!
She has something in her body - don't know what it is yet - and we won't know for a day or so exactly what we are dealing with.  It takes anywhere from 3 to 5 days after the blood samples are taken to see what bacteria is causing all the problems.

For the time being, she is being given 4 different antibiotics to keep the bacteria at bay.  Once we know what we are dealing with, the doctors will be able to give the most effective antibiotic to get rid of the bug.

Its times like this where reality sinks in and I realize how sick my little girl is.  We've been lucky so far in that the effects of the chemotherapy hadn't kicked in but now that they've arrived, what a change - almost overnight.
Her hair is falling out really fast now, the mucositis is making swallowing difficult, and the fever is making her overall very uncomfortable.

Watching and listening to my daughter suffer is really hard.  I wish that I could take her from this hospital and let her live how an almost 3 year old is supposed to live.

Stupid fucking cancer. 

July 27, 2012
Day 4 (5 days after the transplant)

Manue received the transplant on Monday.I wasn't so sure what to expect but it was somewhat anti-climatic. 

It was such an important part of her treatment - without it, life would not continue - and for whatever reason, I thought it would be a bit different.

About an hour before the transplant was to happen, Manue was given a dose of Benadryl to help relax her.  It actually made her sleep which was probably for the best.

An hour later, the transplant arrived.

It arrived in a plastic bag similar to what a bone transfusion comes in.

The bag was hung on the IV pole and simply connected to her central IV line.

The pump was started and in about 2 minutes, we could see the red transplant pulse in the IV until it finally entered into her body.

2 1/2 hours later, the bag was empty and the transplant was finished.

We've all heard about heart transplants, lung transplants, and kidney transplants and what we've always read is how invasive and debilitating these procedures are.

With a bone marrow transplant, there is nothing invasive and from the looks of it, so far, not debilitating for Manue.

She has incredible amounts of energy...

She is eating somewhat normally...

Everything seems to going well - is this the calm before the storm?

The doctor, Dr. Bittencourt, is surprised as to how well she is doing.

Since the percentage of cancer in her bone marrow was so low at the diagnosis of the relapse art and since she only received one cycle of chemotherapy to achieve remission before the transplant, the doctor thinks that the toxicity in her body is relatively low as compared to others in the same situation and this is probably why she seems to be doing well at the moment.

We fully expect that she will be in rough shape in the coming days but it sure would be nice if it wasn't too rough - for her sake and for our sake.

Here is a link to Manue's Bone Marrow Transplant

July 22, 2012
Day -1 (1 day until the transplant)

Manue had a full nights sleep... almost 11 hours.
She woke up bright and early with a smile and a laugh.
It is good to see because typically another side of Manue is present - not her normal, happy self.

Her appetite has increased a bit over the last few days.  She was able to drink 200 ml of milk, eat a bit of cheese, and a couple bites of egg whites - it doesn't seem like much but considering all the drugs put into her system, this is good.

Last night I had a bit of a nightmare situation.  
We need to make sure that Manue has a bath each day.
Ever since the last cycle of chemotherapy, she has it in her head that the water is hot regardless of the temperature.
Normally Jessica is here to help but last night I was solo.

I tried to coax her into the bath. 
Didn't work.
Set the timer to 2 minutes and said that once the bell dinged, she would go into the bath.
Didn't work.

Finally, I had to take her and forcibily put her into the bath.
Good god!
Her legs were kicking - lashing around as if I were putting her in boiling water.
Tears.
Screams.
I surprised that the nurses didn't come into the room to make sure I wasn't hurting her.

Needless to say, the bath was quick.

We'll see how tonight goes.

Tomorrow is the big day.
A fresh start on a new beginning.
At around 2 o'clock tomorrow, she will receive the cord blood transplant.
The cord blood will be allowed to enter her vein over a two hour period.
After that, we wait.  We pray.  We hope that the transplant will work as intended and get rid of this cancer once and for all.

July 21, 2012
Day -2 (2 days until the transplant)

Once again, I had the opportunity to rest at home.  This first week is a bit of an adjustment period but the idea will be that Jess and I alternate days.
This will help make it easier for both of us and ensure that we are in top shape to care for our daughter.


Yesterday, a new drug was given to kill her lymphocytes.  The job of the lymphocytes is to kill off any foreign things in our bodies.  We need to make sure that when the donor stem cells are given, her body will not destroy them because if they do, the transplant will not work.
In order to kill her lymphocytes, the lymphocytes of rabbits are injected into her bloodstream.
In a matter of three days, her body will no longer have lymphocytes and should allow the transplant to happen with mimimal risk.

The only drawback is that she really does not have any defence against bacteria and viruses.  This is why we are in an isolation room which is positively pressured to prevent stuff from entering into the room.
This is why we need to wear the gown and the mask and make sure that we wash our hands very carefully.

July 20, 2012
Day -3 (3 days until the transplant)

Today I had the luxury of sleeping in late in my own bed.  What a treat to be able to sleep without being woken up by nurses or preposés.  Living at the hospital sure makes one appreciate the comfort of home.

The effects of the chemotherapy are starting to kick in.... irritability.... not eating.

She ate ¼ of an apple, a couple bites of toast, and a few swallows of water.

The nutritionists figure that by Monday or Tuesday she will have to have the feeding tube installed.  

She needs to maintaining a minimum level of calories and if she can’t do it on her own, it will be done for her.  

This will help her bounce back quicker.

There are so many things that need to be done to my little girl - many of the things are done by the nursing staff but we need to, or at least we have chosen to, do many things to help make this entire experience easier for Manue.

Medication by the mouth; depending on the day, up to 6 syringes.  Understandably, Manue will not take medication by the mouth willingly anymore.  

In order to give the medication, someone needs to hold her little arms so that she can’t hit the syringe away and her legs so that she can’t kick your arms away that are holding her arms.  Another person needs to take her chin and hold it such that it can’t move side to side while at the same time, slowly administer the medication.  

Not too fast otherwise she is just going to vomit it back up.

Mouth care; she will soon develop mucositis.  We’ve all experienced one or two in our mouths.  We know how painful they are.  Now, imagine them everywhere in your mouth, throat, digestive tract, and intestines.  The saving grace is that they will ONLY last seven to ten days.  Morphine will be adminstered as needed to help ease the pain.

Mouth hygiene is really important.  

So, three times a day, she needs to brush her teeth.  After she has brushed her teeth, we need to swab the inside of her cheeks with a giant q-tip soaked in a terrible tasting solution.  

Finally, we need to once again swab the inside of her cheeks with another giant q-tip soaked in another solution that definitely is not the taste of candy.

As you can imagine, she doesn’t want to open her mouth as easily as she used to.

We’ve worked so hard to ensure that she trusts us.

We always try to give her the choice but ultimately it needs to be done whether or not she wants to.

For a three year old, she is extremely strong.  You would think that something only weighing 13.4 kgs would be easy to manipulate but think again.  Not so easy.

July 19, 2012
Day -4 (4 days until the transplant)

Manue received her first chemotherapy treatment today along with numerous other drugs... drugs to prevent nauseau, drugs to prevent convulsions, anti-fungal drugs, mouthwash to help minimize mucositis which we can expect to see in about 7 to 10 days after the transplant.

Mucositis - ulcers in the mouth, throat, gut, intestines, anus.  It makes swallowing difficult, eating almost impossible.  A feeding tube will need to be installed (most likely Monday) to help her keep up her calorie intake.


One of the drugs that she received today, one that was to help her be calm and relaxed, did the inverse and got her hopped up.  She was a little monster.  Imagine terrible two's, in the hospital with no where to go, and with incredible amounts of energy.
It all adds up to MONSTER.


I am really lucky that Jessica and I are each spending 24hrs at a time here before getting to stay at home for 24hrs because the amount of things that need to be done here for Manue, eat up so much time.  If it weren't for her, I'm not so sure how we would ride this out.