Two Peas in a Pod

Today was the last chemo day!  YAAY!  We are all done, and most importantly, Charlotte is done and has been the complete warrior during this time.

We got to the clinic at about 9am and played for a little while before we went into an exam room.  They accessed Charlotte’s port, and drew some blood, then gave her the last Vincristine dose.  Daddy then walked the blood down to the lab.  We all went back to the playroom while we waited on the blood results to come back.

Charlotte’s numbers looked great, and her AFP was now down to 40.

The schedule for the next few months will be a regular blood test after chemo, then in 3-4 weeks she will have a sedated CT Scan and an ultrasound.  After we return from our June trip to Ireland, Wales and Enland she will have the port removed.  Then every 3-months we will need to return for blood-work.

After clinic, we went up to D7N to visit Colbie.  She was getting ready to go into surgery to have better feeding tubes put in.  What a sweet little girl, and such a warrior!

As we were leaving D7N we stopped and said hi to a bunch of nurses and doctors that we’d got to know over the last couple of months.  We then went to the Ronald McDonald House to visit with Debbie (the House Manager), and her puppy, Dixie!  Debbie is so nice, and we brought her the t-shirts that she had ordered.  She let Charlotte go to the Toy Closet again, and Char picked out a Tea Set (with a little help from Mommy!)

When we all got home, Granny cut Charlotte’s hair, so that it is now all even.  This is so that when her hair starts to grow back it will not be mixed in with the stringy hair that was left after chemo made the rest fall out.  She was such a good girl while Granny did this, and didn’t fuss at all.  Granny then made her a bandana that she wore most of the evening!

We all went out to dinner at Disha Masala Indian in Lake George to celebrate birthdays for Granny and Mommy, and to celebrate Charlotte’s last chemoterapy!

We arrived back at Albany Medical Center last night for what we understood to be Charlotte’s third of four chemotherapy cycles.  By about 9pm she was hooked up to the hydration drip, and when Mommy and Daddy left to go to Ronald McDonald House for the night, Charlotte was asleep soon thereafter.  Granny stayed with Char in the hospital.

Anyway, this morning, Christina, one of the RN from the clinic came to see us and told us that this was going to be our last chemo cycle!  YAAY!  This is absolutely outstanding news that we are overwhelmed to here.

They will also be administering Neulasta to this cycle, as she was sick during the last cycle.  This is to help increase the white cells during chemo treatment, thus helping combat infections.  This is being done as a precaution because Char ended up in the hospital with the fever, and needed the new blood two weeks ago.

Char is getting ready for her morning nap, Granny has left to go to the RMH, and Mommy and Daddy are rejoicing in the momment!

Thank you to all for prayer and thoughts, notes of love and gifts of love!  We appreciate all of you.

On Saturday evening, Charlotte got a transfusion of one unit of blood.  She then had some blood drawn at 4am on Sunday morning, with the counts going from 6.something and this had jumped back up to over 10.  I’m not entirely sure of the scale that is in use here, but this is much better.  8 is the cut of number that signals whether she’d need new blood or not.  I’m sure that if Dr. Pearce reads this she will explain it to us next time round.

Anyway, this new blood gave her an amazing amount of energy.  All day on Sunday it seemed like we were doing laps around the D7N ward. I have embedded some video below.

Enjoy!

Well, here we are… Sitting in a private room in D7North Ward of the Children’s Hospital at Albany Medical Center.  This all started about 20-hours ago, about midnight on Thursday night.  Charlotte woke up in a sweat, had a fever (101.9 F) and wouldn’t go back to sleep.  In the morning JoAnn called the Oncology Clinic and they said for us to come in immediately.  We had a scheduled appointment for Friday afternoon, for blood work, but they wanted us down here right away.

Granny came over with their car, and we drove down, arriving at about 9:45am.  They drew some blood, and at that time Char’s temp was about 101 still.  When the blood work came back the results where that both white cells and red cells were down.  The white is concerning as this does not allow her to fight of infections, and because of this she is listed as "Neutrapaenic" and is required to have a individual room.  If she goes outside the room, she must wear a mask.  The red count is low also, and because of this it is possible that she will need a transfusion.  This is not 100% certain at this point, but this is a possible treatment for tomorrow, once Dr. Pearce has seen her again.

Anyway, she is now fast asleep.  We think that her fever may have broken (this is yet to be determined), but for now she is at least resting comfortably.  This is better than any time in th last 24-hrs…

All of this sadly means that she and JoAnn will have to miss the benefit fundraiser that is taking place tomorrow.  This is sad, but Charlotte’s health is obviously our number one concern and priority.  Toby will still attend as the family representative.  Since so many folks are going to be coming out, it is only right for one of us to be there.

Char has to stay for at least 48-hrs without signs of a fever, so the earliest we will leave will be Sunday afternoon.  It is possible that we will be here until Monday.

We are now home from a long weekend at Albany Medical Center.  We checked in on Thursday evening to get Charlotte started on hydration.  Daddy did the night-shift, allowing Mommy to get a half-good night of sleep at the Ronald McDonald House.

Chemo was eventually started at about 11:30am on Friday, having the 4-hour Cisplatin course run through mid-afternoon.  Charlotte actually slept for about three of the four hours, this was done to the anit-nausea drugs that basically knocked her out!

Later, Granny and Poppa came to stay with Charlotte, allowing Mommy and Daddy to take a couple of hours to go and have dinner, which they did at The Recovery Room Sports Bar and Grill, which is located on the ground floor of the Hilton Garden Inn directly across the road from the hospital.  Great food, and a good time for them to get away and have a short break.

Granny also stayed for the night-shift, allowing both Mommy and Daddy to get a good nights sleep in a real bed, and not a chair that apparently works like a bed!  Unfortunately, in the RMH the mattresses are all "Sleep Number" beds, and both Mommy and Daddy set the numbers at 35, but at about 4:30am they had both woken to find the number at 85, and they both have sore backs from the beds being like boards!  Whoo-hoo to beds with technology!  I think not…

Saturday was an off day for the chemo drugs, but some anti-nausea drugs were needed.  Charlotte had a very cuddlely day, not really wanting to do much but sit and love with Mommy, Daddy or Granny.  Poppa returned later in the day to collect Granny, and they went home.  Mommy had the overnight on Saturday evening, allowing Daddy to retire to the RMH some sleep.

Sunday morning was time for Vincristin and 5FU chemo drugs, and then dischrage.  We left the hospital at about 10:30am and all went back to the RMH.  Daddy and Charlotte explored the toy room while Mommy got ready to check out, and we left to come home at about 11:30am.  On the way home, Grampa Ron called and said that Gramma Dar was working and wondered if Daddy wanted to go to the Albany River Rats game in Glens Falls with him.  Daddy, who loves hockey was right there for this one!

Whilst Daddy and Grampa went to the hockey, Charlotte and Mommy and an evening in catching up on The Wiggles and The Imagination Movers, recorded on DVR while we were away.  Good mommy/daughter time! :)

Sunday night brough around a solid 12-hours of sleep for Charlotte, and about 8-hours each for Mommy and Daddy.  Monday has shown some nausea again, but the medications appear to be working.  Charlotte is still lacking some energy, but this is partly because her hemoglobin counts are low (not enough for high concern yet, though).  All other blood counts are within normal levels.