Pajama Day!

Charlotte woke up bright and early at 7am, but agreed to snuggle with Mommy until 7:30am.  She just couldn’t wait anymore as she was hungry!!!  She again ate a fairly good breakfast and then was ready to go play.  The doctors have agreed to switch some of the timing of her meds and decrease some of her fluids so that she is allowed to be “tubie free” more.  Mommy failed to realize yesterday that Charlotte was out of outfits, so today was pajama day as Charlotte got to be comfy cozy in her monkey pajamas all day.

Charlotte’s numbers continue to remain low (although you wouldn’t know by looking at her).  She was quite active today.  Just in the morning alone she played ball with the staff, drove the shopping cart through the halls, completed some treasure hunts, ran down the halls trying to catch Mommy to tickle her, and ran the opposite way from Mommy when she didn’t want to do something Mommy said to do.  Overall she was an active typical two-year old today.  Today her neutrophils are back to 0 and both her hemoglobin and platelets are still decreasing getting her close to needing more transfusions.  Nothing to be concerned about….low numbers at this point just extends our stay like originally planned.

Dr. Diamond stopped by to state the meeting with the other doctors went well today.  She stated that nothing new was really decided today as everyone agrees with the current treatment plan, but everyone is pleased to know Charlotte is doing so well.  Dr. Diamond did state that they want to research a possible way to test Amy’s blood (which would also include the baby’s blood) to see if they could determine if the baby is a match now.  This way, if the baby is not a match, they can start looking for a potential bone marrow match now rather than waiting until late November.  We were also told by the attending physician tonight that Charlotte’s cytogenetic test results do show she has chromosomal abnormalities that may lower her prognosis.  Kind of a crappy way to the end the night.  It still remains mind-boggling how this beautiful active little girl of ours can have such an evil disease within her.

On a brighter note, several members of Lon’s work (Paragon Development Systems) have been extremely busy in planning a musical benefit and silent auction for Charlotte’s medical costs.  The auction is already up and running and can be found at:

http://www.idonatetocharity.org/store/krent/

Please be aware that the auction end dates will change.  They will actually end the same date as the musical benefit, but that has yet to be decided. Please share this link with anyone you think might be interested.  More items will continue to be added as donations/descriptions are still coming in. Donations will also be accepted via this site.
If you have something you would like to contribute to the silent auction, you can email Kyle at krentmeester@pdspc.com

Charlotte had a great night of sleep and surprised Amy by sleeping until 8am.  She immediately wanted to eat and proceeded to have a great breakfast.  She continues to become more and more comfortable here and is very rarely scared of a new face anymore.  She now converses easily to anyone who enters her room and wants to know everyone’s name.

In general, today was another “slow news” day for Charlotte.  Dr. Diamond (Charlotte’s official MD) came to visit today even though she is not on the attending schedule this week.  She admits to being a “control freak” and can’t keep herself away.  Personally we love that about her.  Amy was very happy to see her as both of us have come to really trust and like her.  She is truthful with us and has over 19 years experience working at Children’s Hospital.  But what we love most is her ability to show us honest compassion and a sincere concern and desire in making Charlotte better.  She feels personally devoted to the cause as she was the Dr that told us that they were 95% sure this was ALL, the easier to treat leukemia.  She had to see our faces when she broke the news to us that she had been wrong, and that we were in for the long haul with AML.  We save most of our difficult questions for her and always anxiously await her visits.  Dr. Diamond was again all smiles with how well Charlotte is currently doing.  Although she knows that our hopes have been crushed several times in the past few weeks, she believes that right now we have every right to be optimistic that Charlotte’s leukemia will have gone into remission after this first cycle of chemo.  She states that the proof is that Charlotte’s numbers continue to be just where she wants them, Charlotte’s fevers have stopped, her pain is gone, and she is eating and being so active.  Of course we won’t know for sure until the bone marrow biopsy is completed, but we do feel cautiously optimistic again with this news.  But Dr. Diamond did explain to Amy that Charlotte’s case will be discussed tomorrow at a multidisciplinary meeting as Charlotte’s particular cancer is so rare.  She wants the feedback of other doctors to confirm we are on the right treatment course and to have ideas of what to do in case Charlotte doesn’t go into remission right away.

Before we can officially go home or do the biopsy, Charlotte’s neutrophil numbers must rise to an acceptable level.  For the past week, they have been at 0 or 10 (which is what the doctors wanted).  For a reference point, her neutrophil count on day one here was 4260.  But since the chemo has done it’s job and Charlotte is rebuilding her blood cell levels, we now we need them to rise.  Yesterday they were 60, but today dropped to 20.  Dr. Diamond had cautioned us that this often happens and is nothing to worry about.  It just extends our time here in the hospital.  Her guess is that Charlotte will continue to do this for about another week and then we can actually talk about going home for a few days !!!

Other than that, our day was spent with lots of play and walking the halls.  G & G Elske and Uncle Lyle visited that brought Charlotte to smiles.  We also started doing a treasure hunt in a hallway (we hide animal puzzle pieces for her to find).  She absolutely loves this game and it makes our walks a little more exciting again.

Here’s to another good sleep tonight, a good day tomorrow and high neutrophil numbers 🙂

Thank you for taking the time to check on Charlotte.  And thank you all for your prayers and support.

Today was a pretty good day.  She ate well.  She even sat in the booster seat and ate at the table.  We had previously been feeding her wherever she happened to be sitting so this is a good change.  She also got in a lot of exercise.  Her CBC numbers continue to improve a little bit daily.

The physical therapist again said that Charlotte is looking better than she could have expected.  Normally Charlotte would meet with the PT for an hour three times a week, but the therapist thinks there is nothing she could offer Charlotte in her state, so she will likely just check in briefly with us again next Monday and give her the all clear for the next week.

The dietitian said that today Charlotte officially is at her weight at the time of admission, even a little bit higher.  So this is also good news.  She had a good bath and went down to sleep at about 9:30ish….a far cry better than the midnight last night!  I hope she has a good sleepy sleep.

All in all, another pretty slow Charlotte news day, but we are kind of getting used to those.

Charlotte’s little friend Ina got to go home today during Charlotte’s nap time.  We are very happy for Gloria and Ina and their family, and wish them a happy and healthy time away.  I am sure we will see them again as she is still in the middle of her chemo rounds and Charlotte is just at her beginning.  There will probably be many more days together here in the future.  Some good, some bad, but all with people who care.

Before bedtime, we noticed Charlotte’s rash come back last night on her left forearm.  This morning it spread to her left elbow.  She still wasn’t bothered by it, and no fever.  The doctors think it is related to one of the oral medications she is given only on the weekends to prevent lung infections.  They have decided to list her as allergic to it, and will change the medication to something different.  It is now almost 9pm and it still looks like it did this morning so it doesn’t appear to have gotten worse.  Let’s hope this fixes it.

Today also marked another 6 days-so she had to have her port needle replaced.  More being restrained, anger and probably a little pain on her end.  But as expected, she survived and is doing very well.  Just as if nothing happened.  The Doctors again stopped by and said they are encouraged by her numbers and they think the chemo is doing its job just as they expected.

She was active again today, and ate a good amount at most meals.  So it really was a quiet day to report on…G&G E showed up after her nap and brought some presents from the family get together yesterday from our relatives in Florida.  Cara and Rob and family got her a real winner.  A children’s digital camera!  Since today was a slow Charlotte news day, we thought we would share some of the pictures Charlotte took with her new camera during her day today.   Thanks to everyone for being so generous and thoughtful!

Presenting:

A day in the life of Charlotte.

We slept in this morning, until about 7:30.  Charlotte was her usual self.  Fan off.  TV on.  Snack…giving orders like normal.  She slept pretty good last night.  Mommy was up in the middle of the night with her Braxton Hicks.  I slept through it all, so she was able to finish the Friday blog when I was probably snoring.

Charlotte had some dry cereal to eat, some grapes, and a little bit of french toast and sausage link…so she was feeling good.  No sign of any rash this morning.  No noticeable fever either.  She was looking and feeling good!  We got her dressed and what do you think we did next?  Walked the halls!

G&G Elske came and brought me my McDonalds coffee!  Charlotte played with them in the family room for quite a while with the legos.  Then she did more walking.

She played with her laptop and started to settle down for a nap a little early as her Benadryl kicked in before she was given her antibiotic.  After a 3 hour nap, she again woke up very happy.  I was relaxed too because I got a little Playstation playing time in!  At this time we noticed that Charlotte’s hair is beginning to fall out.  Mommy saw lots of strands on Charlotte’s pillow and shirt.  This is a bittersweet moment for us.  We were told this was going to happen, yet we realized that we weren’t fully prepared to start watching it actually come out.  We’re happy that the chemo is truly working, but sad to see her baby fine hair go.  Even though she is two, Charlotte has yet to have her first haircut.  We guess this milestone will have to wait a little longer 🙂

After her nap, Charlotte was able to be “tubie free” for awhile.  We took advantage of this by letting Charlotte walk a little faster in the halls and then have a nice long bath.  She was rewarded an item from the “prize box” by the nursing assistant as Charlotte did a great job holding still while she took the large sticker off of her chest that protects her port from the bathwater.  Charlotte happily selected play-doh that she later spent about an hour playing with.  She also ate supper like a champ…one entire chicken strip, 15 grapes, a carton of milk, and an entire banana a little later!

Overall, we again had a wonderful day with our pumpkin.  We feel so blessed that she is still feeling so good at this point.  We were warned that most kids start to feel pretty rotten about now.  Although we know we still have a good week before her numbers will hopefully start to rise again (thus another possible week of her feeling really yucky) we are just taking it day by day and hoping she continues to feel good.  Today also marks two weeks since Charlotte’s diagnosis.  And if many of you recall, the doctor told us she would be gone within 2-3 weeks if we had decided not to treat her leukemia.  When we first heard the devastating news, we honestly both had thoughts if treatment was what we should put her through (as it sounded so incredibly rough).  But now, we thank God every day for one more day with her and are so happy with the decisions that we have made.  We have also come to realize that we are fortunate to have Charlotte enduring this at her young tender age.  We have seen many children/families come and go already.  Some children about 2 months old and some all the way up to teenagers.  Although we may acknowledge what we are “missing” by living in the hospital day after day, we really don’t think Charlotte does.  She rarely asks for home anymore or any of her toys.  I think we miss Broadway more than she does.  Her life and happiness revolves around us right now.  So she really does seem very content to accept this place as her new home for now because Mommy and Daddy live here too.  And wonderful family and friends continue to visit us so she again does not really feel like anything is missing in her life.

Thank you all again for your continued support and prayers.

***Sorry for the late post.  A particular little girl did not want to go to sleep tonight and both Mommy and Daddy fell fast asleep waiting for her to do so***

Charlotte had a somewhat restless night last night.  Starting at about 3am, Mommy could feel Charlotte’s little feet moving around and her hands rubbing her head.  She just seemed like she couldn’t get into a good deep sleep and eventually would sit up and just start talking to Mommy.  She was in a good mood, just seemed like she couldn’t sleep (almost like a mini case of insomnia).  At about 6am, she started acting like a fever again and Mommy again called for the RN.  Her temperature was only about 99.2 F at this point, but combined with the lack of sleep, she was not very happy.  Within an hour or two it was up to 100F so blood cultures were drawn again and Charlotte was given Tylenol that immediately took the fever away and she was soon ready for her Eggo waffle….something she has really missed here in the hospital.

Because it was his last day here, one of the residents gave Charlotte some balloon animals to say “goodbye”.  Too bad latex is not allowed in the hospital and they had to take them from her when she wasn’t looking!  She didn’t seem to miss them though.

Her urine culture from yesterday showed blood in her urine, but was negative for an infection.  The doctors feel that because her platelet count was so low yesterday (before the transfusion) it caused the blood to be found, but requested another urine sample this morning just to make sure.  Poor Charlotte (and Mommy) had to again endure the dreaded plastic bag being stuck to her.  Charlotte again only wanted to cuddle at this time, but we obtained a sample within the hour this attempt and Charlotte was ready to leave the room and get walking when Gma E arrived.  The OT found us walking and allowed Charlotte to play in her therapy room for a little bit.  Charlotte was overjoyed to have found a basketball hoop in there to play with.  It was wonderful to find something else a bit more physical and active to do as you can tell she is getting bored with just walking the halls.

When I stopped home for lunch, Charlotte was happily playing in the play room with Grandma.  She didn’t really care that much that I was there.  So I warmed up our lunch (#13 over Fried Rice from the Blew Inn-Thanks Grandpa E!!!).  She continued to play nicely, even while there was another young boy in the room…she had a little bit for lunch, mostly grapes of course!  And was ready for a nap very soon.

She was ready for walking when I came home from work, and we made several rounds up and down the hall.  The nurses even gave us a new IV pole, one that tracked nicer and didn’t squeak nearly as much…I figured we were entitled to one of the nicer ones since she is doing an awful lot of walking and we will be here for a while!!

Charlotte’s rash also seemed to magically disappear overnight.  There is still a slight bit of it showing, but for the most part it appears gone.   (Mommy and Daddy again noticed it at about 7pm on her arms, but it again disappeared by bedtime).  It still seems to be puzzling the medical staff.

Overall, today was a very good day that felt “pretty normal.”  We did a lot of walking “around our neighborhood”, Mommy and Daddy had a Friday fish fry from the cafeteria like we enjoy, and Charlotte was a very feisty two year old throwing things and telling us no.  We look forward to more of these days ahead.

I have also updated the “what can we do” page with more information about a bill in congress that could benefit the bone marrow registry. Please check it out.

Last night was a pretty busy night.  Lots of doctors and nurses in to see Charlotte, take her vitals and check her rash, etc…fortunately, she slept through almost all of it!

The redman’s rash (on her face and neck) from the antibiotic last night started to clear up before we even went to bed (which was later than usual).  Charlotte has become a hungry monster at night and asks for “something else” all night long.  Amy has nicknamed Charlotte “Grandpa Wagenknecht” when she does this as he’s famous for snacking at night too 🙂  Even after we’ve gotten her into bed with books read and teeth brushed, she’ll pop up one more time for one more snack.  You just can’t resist her when you want her to eat so badly especially as her weight has been dropping a little.

The body rash was still there this morning but she still didn’t seem bothered by it (no itching).  When Amy changed the morning diaper, she noticed a pink color in the diaper.  Fortunately, the nurse was in the room and also saw this and recommended to the MD’s to have a urinalysis completed as it looked like blood.  Poor Charlotte did not enjoy having a plastic bag attached to her in hopes of collecting some potty and also felt that she could not walk during this time.  So Mommy and Charlotte cuddled all morning long until after lunchtime when she finally completed the task and a sample was taken to the lab.  Right now we are told that there were red cells found in the urine so they are waiting for the culture results.  Fortunately, even if she does have a UTI, the antibiotics that she is already on for the possible viral infection will also take care of the possible UTI.  The body rash still has everyone baffled.  We had an allergist consult to help figure it out, but no clear cut answer has been found.  They still feel the rash is due to a possible viral infection or a possible reaction to a medication that was given this past weekend.  Time will tell what it is.

Good news is that Charlotte’s fever is gone and she is in great spirits tonight!  (possibly also due to her platelet transfusion she had today too).  She was asking for something to eat constantly for the 2 hours surrounding dinner time (6 chips here, few cookies here, etc).  Then she was happily playing in her room.  Rash or not, she seemed as normal as she has been here.  Not too much walking was done today, but maybe tomorrow…

Once her antibiotic was done she hopped into the tub for another bath.  Charlotte really enjoys splashing around.  I think this is probably one of the few things that are still similar to the way we did things at home…Mom and Dad are still watching over her the whole time.  Mom and Dad are still fighting with her during her hair wash…oh the good times.  It makes us all feel a bit normal again!

We are proud of G&G Elske as they took a day off today from visiting.  We know it’s hard for them to be away, but we also don’t want them to burn themselves out.  We also found out that G’ma Wags won’t be able to visit this weekend after all as almost all of her co-workers are sick with colds.  Although she currently feels well, she’s afraid to accidentally expose Charlotte to a cold.  We appreciate everyone’s desire to visit and support us in person, but we understand the reality of how susceptible Charlotte is to getting sick.

Charlotte woke up this morning as I was leaving for work.  Mommy took a quick shower, then both of them went back to sleep until 8:30!!!  She woke up happy and ready to eat.  She ate ok.  Nothing too spectacular.

When G&G Elske arrived she was ready to do some walking, but today at a little slower pace.  She had a little less energy and would want to be carried some of the time.

Right before rounds Mommy noticed a rash on her arms and trunk.  They decided not to discontinue her antihistamine.  They weren’t sure if it might be related to the laundry detergent used here or a side effect of the chemo.

At lunch time, she sounded ready for food when Mommy ordered it!  But by the time it arrived, she was ready to sleep, eating nothing.  Throughout her nap, she was restless and would wake up crying wanting to be held.  Eventually Mommy called for the nurse to take her temperature.  When the nurse came to check her out (she had 102 temperature), Dr Diamond happened to stop by.  She took a closer look at pumpkin and looked at the bumps Mommy also found on Charlotte’s head.  They were swollen lymph nodes.  Taking into consideration the rash, fever, and now swollen lymph nodes, the Dr thinks it is a virus infection.  They immediately gave her tylenol and took bloodwork to rule out a bacterial infection, and started two antibiotics just in case it turned into a bacterial infection.

Although they felt bad that Charlotte was not feeling well, they didn’t seem very concerned about her symptoms stating that this is all very common during this process.  After the Tylenol was able to kick in, Charlotte sat up feeling much better and wanting to eat some supper.  The fever has lowered (not completely gone away yet) and Charlotte has wanted to be held all night.  She has also developed a different rash on her face/head that they believe is a reaction to one of the antibiotics.  She does not seem too bothered by either rashes (no scratching), but is unhappy more due to the fever.  The residents on call have decided that she will also be given Benadryl tonight to help clear up the rashes and she will be given this before any of the remaining antibiotics are given in the days to come.

We hope Charlotte has a peaceful night!

Charlotte had a good night of sleep again.  She woke up around 7:45 and was happy.  Breakfast went ok. she didn’t eat an awful lot, but enough to get her going this morning.

Rounds went well this morning too.  Nothing new to report except that everything continues to look good.  And she is now done with her first 10 days of chemo!  She should be taken off some of the oral meds as a result.  So hopefully mornings and evenings should go better!  She will also have very little fluids so she may not have the IV hooked up for a little while yet!!  We will need to keep a better eye on her food and drink intake now more than ever.

She was active again all day, even a little sassy-hiding and throwing things like a normal two year old should do.  She had a great nap too.  When she woke up, she had some professional pictures taken by a group that photographs children with cancer to “change the way they see themselves”.  Pretty neat stuff.  We should be getting some beautiful pictures of her in 4-6 weeks so that will be swell!

The attending physician stopped by and again said that she couldn’t be more pleased with Charlotte’s progess.  We like to hear news like that.

She met a couple more puppies today and pet them each a couple of times, then wanted to walk more.  She even stopped in the play room a couple of times and spent a few minutes playing with the volunteers!  Tonight she sometimes thought that walking down the halls wasn’t good enough and started to run a little bit.

Today was a very active day for her.  And now it is bedtime and she can’t stop eating.  She has been snacking for the last hour!  Today was another good day.

Thanks to everyone for their thoughts and prayers.  Charlotte seems to be doing great!

Today Charlotte woke up happy and ate a good breakfast.  She is still liking one of her favorite cereals from home-Special K with strawberries-actually the roundy’s version of Special K, tastes pretty close to the original to me!  We had Grandma and Grandpa pick us up a box.  She loves the dried strawberries in that cereal.  I will have to stop at the store tomorrow and see if I can find just some of the berries.  I am sure she would love them!

It was a busy day today.  Rounds went well.  We met another new attending physician-she also seems very nice.  Charlotte’s neutrophils continue to drop so she will have to keep wearing a mask when she goes out of the room.  Amy and Charlotte met with the physical therapist too.  She was very impressed with Charlotte’s mobility and said that there is nothing she can do that would help out much right now.  She usually has kids that don’t even want to sit up and play so to have a little one stay active like Charlotte is doing seems like good news to me.  The dietitian felt that she is holding her own as well.  No concerns there either!

Dr Diamond stopped in for a quick visit even though she’s not attending this week.  She was all smiles, very pleased with how Charlotte is doing both physically and by the numbers/CBC results.  So we think that we can handle that news right now!

G&G Elske showed up with a few more cards.  One of them made funny noises when it opened.  Charlotte enjoyed that!  Overall it was such a busy morning that Amy said the time just flew by and before she knew it, it was time for lunch.  Charlotte filled up on grapes for lunch.  At least she still likes those!

She had a good nap and woke up ready to walk some more.  We played in the play room, watched the “girls” on the computer, and walked the halls until dinner time.  Then shortly after that it was bath time.  We wanted to get a bath in early tonight because we needed to change out her port needle tonight.  We removed the needle before bath time and after bath reinserted it before the evening chemo round. This is a mentally draining process and I am glad we all only have to endure it every 6 days.  I am sure it is just as tough on us and the nurses as it is on Charlotte.

We sneaked her crushed up pill in through her syringe of tylenol tonight.  It worked wonderfully.  The doctors are thinking she may not need tylenol once the chemo is done, we may have to lobby for it just twice a day instead for this reason alone!

We had another good day.  She walked a little, ate a little, pooped a little, cried a little, played a little and slept a little.  Screw Jim Valvano’s quote-Charlotte had one heck of a day.

Today marks the 10th day of treatment of our longest running chemo drug-cytarabine.  She had one treatment at 8pm Monday night, and the last will be Tuesday at 8am.  Then she is done with round one of the chemo!  We are just praying that somewhere inside her little body, all of those rotten drugs we have been giving her have actually been killing off the leukemia.  We will know when the next tests are done-after she rebuilds enough blood cells to measure the levels properly.  Thanks to all of you for your continued support.  Please keep your positive thoughts and prayers coming!!