Admission #6 and after

Taylor did really well for almost a couple weeks.  She left the hospital on the 4th with counts in the 600's.  She got her counts checked by home health while she was home.  On Fri the 9th her NG tube got clogged up and we had to take it out.  We tried to get it replaced on Mon through home health but they had the wrong size tube (they also didnt have the needle to access her port so they had to poke her arm to get her counts, that was not fun).  She went ahead and put it in, which was not fun either since it was bigger than usual, but that night we found it not working (all that trauma for nothing).  Her counts came back that day in the 200's so we have to keep an eye on her and keep her away from people.  The next day we pulled out the NG tube and found there was a kink in the bottom of the tube.  So she went without feedings for quite a while.

Then, Thurs the 15th she got a fever around lunch time, right before home health was scheduled to come.  She was at 101.3 and since she had low counts, we had to being her right to the clinic and they ended up admitting her that day.  Her weight was down a bit and we don't like that. They gave her antibiotics, replaced her NG tube and watched her fever.  The fever went away that day and never came back.  They gave her some more of the injections for WBC growth since she will be having chemo this week and they sent her back home Sat afternoon with her counts up over 2000.  We were glad it was a short trip, but it is still crazy that a fever warrants a 2 day hospital stay.  Since being home she has done really well.  Her feedings are going well and she is even eating some here and there.  She has even gone on the potty a few times :)  She is sleeping well and playing and being her normal self.

Home health just came today so we are waiting to get those results to see if they are still up and good.

Admission #5 continued

The rest of Sat went great!  She felt good all day.  She had no fever all day!  We played some games, walked around, and watched tv.  She even went on the potty once!  Woot!  The hubs spent the day cleaning the house, score!  A friend offered to bring them all dinner and that was so nice!  Taylor didnt eat breakfast or lunch.  She ordered lots of food at lunch time but they had set up a day feed 11-2 (which went well) so when it got here, she wasn't hungry.  She didn't touch one single thing.  Around snack time she decided to eat the cheetos with ranch dressing and drink some apple juice.  Not a lot but it was something.  Then she took a really long nap.  I worked on planning homeschool stuff during the day, this was much needed as we only have one week till school starts and I have barely even thought about it.  It felt good and gets rid of some stress.  Taylor woke up fussy but then was back to happy.   They stopped her Dapto and changed to a different antibiotic.  I am not sure how long she will be on that one and the other new one they started thursday.  So today she had 4 different antibiotics, that is nuts!

My nephew was getting baptized this day, so my Mom skyped us in on the service.  The kids at home with Dad did too.  It was really hard to see, but we are excited for him.  We wish we could have been there!  We ordered dinner and she nibbled on it consistently.  Then I set her up with a movie while I went jogging.  Last time I was stuck up here I missed all my exercising and didn't always get to eat well and I didn't want to get that far off track again.  Again, it helps release stress and I need to take care of myself :)

She slept good all night and even slept in a bit.  The nurse and I woke her up around 8am.  I checked her counts and they are down to 560 and her platelets are down to 64.  When I saw this I got worried that maybe they would say we had to stay.  I really want to go home.  The docs came and did rounds around 9am and it was good news!  We get to go home!  Thank you Jesus!   They are taking her off her antibiotics.  They are still waiting on a couple labs but the result won't matter because they are for viruses and they can't treat them.  They also are going to set up home health to come check her blood in a few days to see how the counts are going.  She may have to come back up for a transfusion if her platelets/hemoglobin drop too much more.  So pray they don't get worse because we really don't want to be at the hospital.  She has off the next 2 weeks from chemo so hopefully we will be good for quite a while.

Admission #5

Wed the 31st, she was doing great after her last ordeal the week before... feeling awesome, playing and everything.  She had good counts when we got to clinic that day so they gave her Chemo for the day.  She got her port meds when we got home and then had a nice day.  That evening she started getting a bit warm, 100.  She had a good night and tolerated her feed.  The next day, she woke up with 100.3  An hour later she was 101.5  and then 45 min later she was 102.2, so I had to call the docs.  They said to bring her to clinic.  Dad took her and she was 103.3 when they got there, had good counts 3940 but they think she has a virus and she is being admitted.

They got her admitted and the ID docs came in to check her out.  They did not seem to find any signs of anything else on her body to help them diagnose her.  So we have to wait on the virus tests and blood culture to get any more info.  That evening they took her for a chest xray just to make sure all was well there.  She isn't really coughing much at all but they want to check anyway.  Laying in the hospital, she was so cold, wrapped up in tons of blankets.  She played a little bit while she was in the clinic but was really tired the rest of the day.  I got to go visit her that night since my mom was still visiting us.  Taylor had been asking for me again.  When I got there she was watching tv all curled up in a ball on the bed.  She was really tired.  She had eaten some dinner but not too much.  She didn't talk to me much at all.  After a bit, the night nurse came in and intro herself and got the nasal swab to check for viruses.  Poor Taylor hates getting that thing done.  So now we keep waiting.

Friday was really crazy stressful for lots of reasons, all kinds of stresses in our family.  They decided to try a day feed to see if that would help her get the amount of nutrition she needs.  She threw up while on it though.  We don't think she is doing well tolerating such high speed feedings for some reason.  So it is up in the air what will happen with all that.  That evening the hubby had to come home to de-stress and then I went up to take my turn.  He says he just can't take the stress anymore and needs to stay away from the hospital.  I had a friend come up a little while later because I just needed a friend and some girl time and to talk and such.  It was nice.  Taylor spiked to 104 this day and at 10pm was 102 again.  She still shows no other signs of anything and counts are still really good.  Her virus panel came back all negative so that is good!  They were able to take her off precautions so people no longer have to come into her room in gowns and such.  They still want to try a couple more things to see why the fever.  They are also going to continue the dapto (antibiotic) just as precaution and she started a new antibiotic when she was admitted.  They want to make sure to cover all bases.  She still has diarrhea.

Saturday morning she woke up and had no fever.  She whined when waking and wanted to go home, but once she was fully up she was doing fine.  She watched tv and talked and played games most of the morning.   At home, things seemed to be going well.  My mom had to leave a little before 10am because she had to get home for my nephews baptism later that day.  We were all supposed to be going up there for the weekend if Taylor was doing well.  We will miss seeing this awesome event.  The docs did their rounds about 10:30 am and they still think it is a virus, just not one they test for.  It is their best guess as of right now.  They are still running some more tests, like the culture and a fungal test.  They want to see the fever stay gone for 24-36 hrs (it has been 12 hours since her last one so far)  and for her counts to stay in the healthy range (which they are 1510 at this point).  Her platelets have dropped to 75, which is not cool.  If they get down to 50 she will have to have a transfusion.

If she is still here come Mon, we will need some help with the kids and meals and such.  So, if anyone would like to offer a time to do either of those, please let us know.  I just found a cool website where we can post all our needs and you can pick and sign up for when and how you want to help.  I will post the link to family and friends if we end up staying in the hospital and need it.  Thanks.  I feel your prayers and love!

Admission #4 I think

Well Taylor had to be admitted on the 18th because her counts were dropping really fast and she had a virus, the cellulitis, and come to find out- a bacteria in her blood.  Lasr I posted was that she got allergic to the antobiotic they gave her for the cellulitis.  She was admitted and the next day given something else.  Her blood culture came back positive for bacteria in her blood, so they want to make sure to get her on the right antibiotic.  It took them days to figure out what the bacteria was though (cultures take forever to grow and show info).  She was at the hospital with Daddy and just kept being whinney and crying for mommy.  She did not feel good and slept a lot and watched a lot of tv.  We got to skype here and there which helped.  She really just wanted to go home.  She would start feeling better after the antibiotic and start playing some and nibbling on food.  Then she would get tired again.  She did not eat much at all the entire stay there.  She threw up her NG tube the first night in the hospital and they left it out since she was coughing so much.

On the 19th they took her for a chest xray just to make sure her lungs were ok from the virus and everything.  All was good on that front.  On the 20th her counts were still dropping and her platelets were dropping some too.  That day I got to switch and go up to be with her.  She got to see her baby sister for a bit too, which made her happy.  She misses her.  She is still sleepy and not active and still having fever.  She is coughing extremely bad and has lots of diarrhea.  Her bottom is very sore and needs special treatment to help it heal.  On the 21st she had a negative culture for 2 days in a row.  That was good news, and finally found out that it was Alpha Strep bacteria.  But we did not know if they antibiotic was affective for it or not yet.  She still had the virus and high fever and everything else.  Her leg was much better and pretty much all healed.  On Monday the 22nd her counts were down to 260.  This thing was not going away.  We were tired and stressed and ready for this to be over.  Life was very hectic.  They began her on some meds to help stimulate her WBC production, called G-CSF.  She was still having all the same problems.  Now it was time for Daddy to switch with me again.  I drove home and then he drove up.  We were hoping it would only be a couple more days, but ended up being the rest of the week.

On the 23rd her counts were down to 140 but she had finally been fever free for 24 hrs!!!  About time!  On the 24th her counts were up to 190 but docs were really worried about her not eating.  She has had her NG tube out the whole stay and has not gotten her feedings and is not really eating.   They wanted to get that tube back in and see how she does with feedings, so she got it that night.  This day they replaced her needle in her port since it had been a while and it was getting loose.  They decided to stop the G-CSF since she was going up so they could see how she did.   But the next day her counts were down to 100!  So they started her back on the G-CSF.  They want to watch her and make sure she stays up and then she can go home if things look well.  Finally, on Friday the 26th she was up to 260 and tolerating feeds and they said she could go home.  The kids and I went up for a visit that morning to see her and so I could talk to the nurses about what we need to do at home.  They taught us how to give herr injections and her port IV meds at home and within a few hours she was home!  Whew, what a long crazy adventure!  A bit of stress relief automatically came.  By this time we were completely exhausted and stressed and tired and whatever.  I had begged my mom the day before to come down to be with us to give us some help and a break.  She was able to come Fri night and we were so happy.

First night home she threw up a couple hours into feed.  So we had to slow it way down and slowly increase over the next couple days.  She did well.  Saturday was my bday and I was so happy to have my whole family home with me!  The nurse came on Sun to take her counts and they were great, up to 4390!  Things were going well.  We were able to stop the injections.  She was still on her port meds, which I was able to do well.   The next day we realized her tape was coming off her port access.  So we told the nurses and they said it was a problem and it needed to be sealed and by a trained person.  So we called home health but didn't hear back till that evening when I called again.  She said that the retaping I did was fine for now and she would come in the morning.  Mon night she also threw up a couple hours into her feed.  So we cleaned her up and set it back up at a little lower pace, she did fine the rest of the night.  So, Tues the nurse came and looked at the port and said she would just retape it as well and that we should just take it off after her meds that day and it could heal until she got her new one that was due in the morning at clinic.  So, we did that and it worked out well.  I think I have accrued enough nursing hours over these past 6 months, lol.  Wed she was great she was active at clinic and the nurses were happy to see her back to herself.  She got to go outside and play and we had a nice day.

Virus and Cellulitis

Since Taylor had to miss week 4 of chemo last round, and we already had our MAW trip scheduled, she had a 3 wks off time instead of 2 week.  it was so nice not having to worry about doctors for her for a while.  Oh, yeah she lost her NG tube the Fri we left Florida and missed all the feedings until getting back to clinic the next Wed.

Last Wed she went for Chemo 1, and her counts were like 1400 so all was good.  Her weight was down a pound though, and they were not happy with that.  They want us to try better on getting all her full feedings.  She got chemo for the day, had a nice day and then that night started getting fever, which got up to 100.9 and then after an hour to an hour and a half went down on its own.  So, we never called it in.  She had low fever the next day, and after that all was good.  She was playing and acting fine.  All weekend she was good, we even made it to church.

Then, Tues she woke up with a fever of 101.3 and we had to head up to the clinic.  I was bummed because we already had an eye appt later that afternoon and did not want to spend the whole day at the hospital.  We were able to get someone to watch the kids for us part of the day so that helped my hubby and I out a lot so that we were less stressed and able to get more work done.  Her counts were around 1500 so that was good.  One of her mosquito bites is really swollen and red and tender to where she is fussing and doesn't want to walk on her leg.  They think she may have cellulitis in it.  So they gave us some antibiotics for that and marked its size.  They gave her some antibiotic in her port for the fever and then we were done just in time to make it to the eye appt.

The eye doc says things look good.  There is less bulging and better tracking of the eye.  They are not sure if the vision is better, same, or worse.  They can see damage on the nerve from the tumor.  She does not need glasses, but may in the near future need some patching done to strengthen the weak eye.  So all in all, a good report.

That night her fever got up to 102.7, she was not able to take med for the cellulitis that night.  It was too big a pill and mixing it in applesauce made her throwup.   The next morning she was sitting on the couch after waking and she threw up again, all over herself (losing her NG tube again)...  We went to her chemo appt and she was still fever at 101.8, they got her counts and she was up to 2400.  So that was amazing.  They said she did have a virus of some sort though which explains the fever.  The cellulitis was different today, the swelling and pain were pretty much gone, but the redness covered a larger area of the leg.  So there was debate on if it was getting better or worse.    They wanted to make sure she got the antibiotic to treat this thing though because if it gets an infection in the blood it can be very dangerous.   They wanted us to be admitted but since it is easier for us right now and it is workable, they are letting us go home with the meds and come back the next day for follow up.  They went ahead and started her on chemo and ordered her a liquid version for us to try to put down her feeding tube.  However, the insurance was down and they could not get approval while we were there.  Finally, the clinic just ordered an inpatient dose for her to take.  But instead of the liquid they came in with a pill dissolved in some apple juice.  They put that, along with some pepcid, down her fresh NG tube and made us wait 30 min to make sure she would handle it ok and not throw it up.  All went well and we were finally able to walk out of there by like 2pm.  They wanted us to come back the next day just to check on the leg and fever.  They didn't think they would need to draw labs or anything, it should not be a big visit.

They said to call if fever spikes again, and around 4pm, she was up to 103.3!!!  OMG, this thing will not go away!  I messaged them and 30 min later no response.  I needed to know if I could give her any meds for the fever since it had been over 24 hrs since the rosefrin on Tues.  So I called and had them paged.  30 min later, still nothing... so I went ahead and treated the fever... the poor girl was hot and that was high.  About 15 min later I got a call.  They said it was fine to give tylenol.  Then I realized I had given motrin instead and that we were not supposed to do that... i started freaking out a bit.  The nurse on the phone said it was fine just don't do it again and that it wasn't a big deal.  I never have to treat the fever at home and I had totally forgotten the rules in the midst of my stressball of a life, I felt horrible.  (Also, need to mention that this whole week my hubby has been battling a horrible knee pain.  It is pretty crippling at times and has kept him off his feet a lot.  Not sure when he will be able to go have that looked at.  He prolly needs an MRI to figure out what the problem is.  During our MAW trip it was his elbow that was acting like this and he could barely move the thing for a few days)

That night was horrible... T kept waking up and complaining about her stomach A LOT.  I finally had to just shut off the feed.  It got better after that.  Then hubby was snoring was too much so I had to leave the room and I took Taylor with me to the living room couches.  She was up a lot the rest of the night, talking weird in her sleep and such.  It was strange, she has never done this much before.  She got fever back up to 102.7 and I treated with tylenol.  We didn't get a whole lot of sleep.  She woke up and felt ok to the touch.  I got everyone up and ready for the day.  Then Taylor and I were off to the appt.  When we got there and I was carrying her in, she felt warm again.  I knew the fever was back.  They took her vitals and she was 100.9 but she was still looking ok.  We got a room and the docs didn't like that she had to miss her feed and want to know why she keeps having problems.  So do we, lol.  Right now we don't know if it is the chemo, the virus, the cellulitis, or any of the meds she is taking, lol.      They started her on fluids and took her labs.  Then she had a case of diarrhea, and I didn't have a change of clothes or anything since we were not planning on a long trip this day.. fun times.

Her counts came back and all of a sudden they are down to 760!  That is a huge drop in 24hrs.  They don't like that at all, the nurse comes in and says Houston we have a problem.  It was very unexpected and now Taylor will have to be admitted.  The doc wants to try a diff stronger med for the cellulitis to really make sure it is getting better.  The fact that the redness has gone down is not enough proof, because the WBC cause the redness, showing the body is fighting infection.  Since her counts are now low, it may be less red because there are not enough WBC fighting.  What a crazy case of sick Taylor has going on all at the same time.  They started her on the mew antibiotics and I called the hubs to let him know to get packed up so we could switch places for tonight.  Right before he and the kids made it up to the hospital, Taylor started coughing a lot more, then her head started turning bright red, half her face too.  Her eye started watering and she didn't look very well.  Her skin on her arms sort of looked a little yellow too.  I was freaking a bit.  The nurse didn't like it and shut off the med and went and got the doc and some benadryl.  The doc came in and said it was a typical side affect and that next time they will give benadryl before hand.  Then, the family was there and it was time for me to go.  It was so hard to leave right in the middle of this reaction and her looking all sick.  I didn't want to leave.  I cried off and on the whole drive home.  We got home and we did a eat what you can find night and the kids were pretty good and here I am now updating away.  Taylor seems to be doing better and vitals are good, they are finally admitted in a room now.  They will take labs again in the wee hours of the morning.  Not sure how long she will have to be there.

Make A Wish

The Make A Wish team had a party to announce Taylor's wish on Tues June 18.  It was held at our local chick-fil-a and it was so fun.  We had some friends join us, everyone got a free meal and it also happened to be the cows bday party at the same time.  So the place was very festive.  MAW made her a Dora beach cake, she loved it so much.  They explained our trip to us and we were blown away at all that was included and the kids were very excited.

Then, the next day was 4th dose of chemo for this round.  Her counts were too low, 300, to get chemo but she did not have fever.  Then Fri we ended up having to go to clinic due to fever that morning and.  It too forever to get her counts because they had to hand count them and there was only one person on staff in the lab for that this day.  The nurse came and said she had to be admitted due to low counts.  We got a room and still didnt really have a full count on the WBC but she was having fever and the quick count was low.  Turns out the count was 330.  She did well in the hospital, and that night my hubby came up with some Sushi and we had a lil date night watching a movie in the room there.  Then he stayed and I went home w the other kids and my sister.  Taylors counts were getting really low, 170, and not going back up, so she had to stay there through Mon morning when she was back to 300 and no fever.  That was a loooong stay and we were so happy to finally get her home.   It is hard to be away from your spouse for a few days, especially during a time when it is stressful having a sick kid.  It was so hard to not be with her the whole time too but we were so lucky to once again have a family member visiting during a hospital admittance to help out.

Over the next week she got better, she had gotten back up to 1070 by Wed, so we were all cleared to go on our MAW trip that Fri!

The whole trip went great!  Taylor did not get sick at all, no fever, no feeling bad, or anything.  It was such a blessing to be able to go and have a week of fun with the kids and not have her get sick.  We of course went to Orlando.  We were picked up in a limo.  We stayed at Give Kids the World.  That place is really neat!  We recommend it for a kid's wish trip!  We did all the Disney parks, the beach, and Lego Land.  We got rained on a whole lot the first 2 days but the rest of the time was pretty good weather.  We got to meet Dora, Jake the pirate, Phineas and Ferb, Princesses, Mickey, Pluto, Marry Poppins... and we saw the marvel superheroes but we just missed doing a meet and greet with them.  The kids really enjoyed the trip.  It was crazy and stressful from time to time, but it was a great experience and memory for all.

MRI update!

Taylor was in the hospital just a couple days over Mother's Day weekend.  She neve had any complications.  Her counts went down to 280 or something, I can't remember; but they sent us home anyway since everything else seemed well.  She was not able to go anywhere or have any one over though over the whole next week until she was back in clinic to have her counts checked again.  She had to miss her best friends bday party and a couple other things, but she was "healthy" and got over the whole low count episode, so it is ok in the long run.

She has not had fever or been to the ER since that trip!!!  That is so exciting!  That is the longest she has gone without a trip there.  She has been doing really well.  Counts have been great, energy good, eating okay, etc.  She has been having the sleeping problems again though.  I am really bummed about that.  It is hard to hear your little girl crying and screaming in the middle of the night for no apparent reason and there is nothing you can do about it.  You want to be able to help or fix it, but really its like we have no idea what to do.  She sleeps in our room half the time just to be closer to her and to keep her from waking up the other girls.  Her feedings seem to be going well.  Her leg pain still has not come back!  Her voice is still going strong!  Her weight has still been going up!

Monday she had her follow up MRI.  It went really well.  We were in the morning so we didn't have to wait much and were in and out pretty fast.  Today in clinic we got to find out the results.  It was great news!  Her tumor has shrunken!!!  That is not expected.  Remember, in this treatment the goal is to keep it from growing and causing more problems.  So in less than 5 months, it has shrunken in width by about 2mm!!!  That is so awesome!  It is nice to see this stupid chemo is working!

Her counts have been slowly going down over the past few weeks of treatment.  Today was dose 3 of this 4wk cycle and she is at 590.  This is almost low enough for hospital admittance.  So please pray with us that no fever or sickness comes over the next week or 2.  We had to wait around an extra 1.5 hrs as they rechecked the counts to make sure she was over 500 so she could get her chemo today.  Finally, they came and got her started.  I am so glad we don't have to altar our schedule again.

Next week Make a Wish is throwing Taylor a wish reveal party!  We are so excited to see her find out about her trip.  We are scheduled to take it in a couple weeks.  So again, pray she stays healthy and everything goes well.  It will be great to have a nice vacation with the kids, we haven't really had a good one in like ever.

My sister comes to stay with us next week to help out.  I am really looking fwd to that.  Summer is in full swing around here and it is nice to have some stress gone for a while.  Schooling adds a lot of stress around here.  This is a very welcome break for me.  Anyway, better go... gotta get a kid from camp.  Update more when I can.

Being admitted: low counts

This week was the 2nd dose back at 100% Vincristine.  All went well, until Thursday when she stopped eating and at night she started coughing a bit and freaking out a bit like she used to do, enough to have to move her out of her room.  Her brother was out of school this week with strep throat and ear infection and baby sister started getting fever and goupy eyes so prolly has some sort of virus.  So we kept watching Taylor but she seemed fine fever-wise.  Then Friday night she was coughing so bad she couldn't sleep, nor could I.  It was horrible.  It was so bad she finally coughed up her NG tube and it had to come out.  But her fever was only 100.0

This morning I kept watching her.  She still had no high fever.  She still didn't want to eat.  Then, close to lunch she was getting tired, said her ear hurt, and was feeling hot; alas she was 101.8  I finished up somethings, had some lunch and checked again, same thing.  So we started getting things ready and calling the Dr.  And around 1:30 we were off to the ER to get checked out.

When we got there, we had a room right away, it was nice that they were not busy.  This is the first time I have had to run to the ER during the day, so that is something new.  Her fever was now 102.2.  They say her ears just have a little fluid in them, but nothing looks bad.  They did a swab for strep just in case- but it was negative, and of course they took her labs.

Her counts came back really low 460, anything under 500 means that we have to be admitted to the hospital for observation and "quarantine".  There go our plans for my sons bday weekend and mother's day weekend.  Oh well, such as life.  At least Nana is on the way here as we speak... we will need the constant extra help over the next couple days at least for sure.  Will update more as I can

quick update

Ok I know it has been over a month since I have posted.  So sorry about that.  Things have been busy and I guess I didn't have the gusto to keep writing.  After the last hospital admission, things have been different.  She turned right around and had more of the same pain the day after leaving, this time moving to her foot instead of hip.  Then it went to her knee.  After a few trips to ER for pain and fever, we finally made it back to clinic where they said it is most likely just neuropathy pain and they prescribed her some meds for that.  They pain continued over the next three weeks during her two week break from chemo.  It came and went and moved around.  She stopped getting fever though and after that one really bad week, we had a couple of good weeks.  Then it was time to start chemo back up.

They started back at the 75% level of Vincristine again.  She did well.  The next week she went up to the 100% since her voice was still doing great.  The next day her nerve pain issue stopped.  So after a few days I backed of the nerve meds a bit and then just stopped them all together.  Her pain has not come back.  That is awesome.  Her weight is up a pound, stomach pain is gone, voice is great, nerve pain gone, and no night terrors!!!  Things have been great, just one trip to ER last week for fever and then home.  Counts have been awesome!

Admission to Hospital

So, we got to the ER and Taylor was whinning in the car and she didn't walk to walk and it hurt her leg when I carried her but I was not about to drag that huge stroller around all over the hospital.  So we made it inside and again were told to wait in the conference room, but not even a minute later the nurse came and got us.  Vitals were taken and she was up to 103.4.  Then with Tylenol it went down to 99.8.  They wanted urine, but she would not go.  She did not want to move.  So many different nurses and doctors came in and out wanting to check her leg/hip pain and find out what was going on.  We waited around forever!!!  Taylor would never pee, and they needed that test done.  While we waited, the doctors were still trying to figure out what was going on.  I asked about t just being a pulled muscle and she said that kids don't really get those, it is not common.  They think it has something to do with a virus or bacteria.  They had her get an ultrasound to help diagnosis.  It came back good.  They took her blood and it came back good.  Later, her fever came back.  They were about to give us the antibiotic and send us home like normal, but then the head Doc was too concerned about her odd pain, so she wanted more xrays.   So she went for more xrays.  They came back good.  The doctors had lots of talks about Taylor's situation all night long, lots of different kinds of doctors.   They decided she needed an MRI so we were admitted to the hospital at 11pm and she was cutoff all fluids and food.

Taylor was still very tired and didn't want people touching her leg, but of course more ppl came in to do so.  An orthopedic doc came and examined her and talked about what could be the problem and why we were getting an MRI.  They said it could be sepsis or bone infection.  If it was the latter then it would mean surgery to dig the infection out of the bone since antibiotics do not work on those.  I did not like the sound of that.  We got all comfy in the room and Taylor got antibiotics and pain med and her normal meds.  In the morning, it took a while but we finally were told the MRI would be at 12:30.  Taylor was really thirsty and hungry and crying because she couldn't have anything.  A whole doctor team came in to go over the run down of Taylor.  It was neat, like being in an episode of Scrubs; all the docs standing around with their clipboards listening.  I was impressed with all the info they went through and nailed.  They helped fill me in on their thoughts and plan while they were there.  Then more waiting.  It was a long wait, but thankfully they got us down like an hour early!  That was awesome.  My husband met me for lunch while we waited for MRI.  She was out within 2 hrs and she wanted her popsicle. We got back to the room and waited on results.  No news, was good news because if they saw something bad they would have called while she was still under so that they could do what they needed to do with my permission. It took forever to finally hear anything though.

It took a while, but a couple hours after the MRI Taylor was fully out of it.  She was actually feeling better than she was.  So that was nice.  She ate some snack and watched tv.  Her leg seemed a bit better too.  We finally got word that the MRI was good.  They didn't see what they were looking for.  But they did see some inflammation in her muscle.  They said that it could be either myolitis (?) which is from like a virus or bacteria stuck in the muscle, or that it is a strained muscle.  So it was nothing serious.  It would eventually go away.  The plan was to give her pain med scheduled regularly to help her.

By the end of the day, she was feeling much better.  She was walking around, slowly with limp (a twist in her hip), she was sitting up and talking.  She seemed good.  We were hoping to go home but the docs said they wanted to watch her pain and see if the fever returned or not.  So we had to stay another night.  By that night, she was doing so well that the nurse and I decided she didn't need pain med and she went without it.  We had a great night's sleep and in the morning Taylor was feeling perfect.  Ortho came in at 6 to check her and he said she was perfect and that we should not be here much longer!

At 9am we still hadn't seen a doctor or nurse (besides her vitals being checked).. I mean what is going on?  I went to grab some breakfast at like 9:30.  Around 11 we finally saw a team of docs and they checked out Taylor and they were going to send us home with antibiotic for her to take but after seeing her they say there isn't really any sign of the myolitis.  So she went to have paperwork done up for us to leave.   At 11:45 she comes back and says there is a change of plans.  She ran into the infectious disease doc and he wants to see Taylor first, because he thinks she should still take the antibiotic.  So paperwork put on hold while we waited yet again.  They said he should be on the way.  While we waited Taylor took a little nap.  A while after she woke up, she diarrheaed all over the place.  It was a huge blowout mess that called for a change of sheets, clothes, and a sponge bath.  Finally, at 1:45 a doc from ID came and checked Taylor out.  Then she left to consult with the ID team.  I finally ordered Taylor some lunch and I went down to get myself something to eat.  I was starving!!!  Then, at 2:45 the whole ID team shows up.  Taylor was fully herself at this point, wide awake and all over the place.  They saw a happy, healthy, silly, energetic 4 yr old.  Oh my was she feeling good.  They say they want Taylor to take the antibiotic over the next 2 wks since it could be a bacteria causing the problems and they want to be safe.  They think the antibiotics are what helped her get better while she was here.  So they left and put the scrip in for the med and to get her papers ready so we could be released.  We waited around a while for the order so that the nurse could take out her port access.  Finally at 4:00 the nurse came to de-access her and we were out of there... Hit the pharmacy at the hospital on the way out and were driving away by 4:20... of course it was traffic hour, and we had to stop at walgreens as well, but we were home by 5:15, just in time to unpack, rest a bit, feed the baby, and have the meal our friends brought us.  Now it is time to get her ready for bed, hopefully nothing else eventful happens.

Lots of ERs

Wow!  So there has been a lot happen since the last post.  A few hours after posting, she got a fever and after watching it for a bit and it rising, we had to go to ER again.  They made us wait in the conference room to be away from others, it was a bit of a wait and she went potty while we waited.  It was really busy.  We were finally in a room then realized we didnt do magic cream for her port access, so the nurse had to go get the stuff, put it on, and then we had to wait for it to numb.  They did the access with the wrong size and it did not feel good, poor thing was in pain.  We got results and her counts were like 11000, still high so that was good.  They did a flu test, it was negative.  They wanted a urine sample, she didn't want to go.  I was really wishing we had a cup when she went when we got to the ER.  Finally we got her to go by bringing in a potty to the room.  Then, they gave her the antibiotic and Tylenol and we were still waiting on urine test.  It took forever to get the results!  Finally they came and said she had another UTI, strange.  She just finished up the meds from the last one.  And she also how no pain anymore.  Anyway, then we went home with a prescription for a new antibiotic.

The next day she was fine.  She was running around being Taylor all weekend.  Saturday night she was playing around so much that she fell and banged her head, cutting it open a bit.  So I had to take her to the local ER to get it glued back up.  It wasn't bad though, in and out really fast.  And she brightened up the faces there that worked with her.  She is such a charmer.

Tuesday afternoon she started complaining about her leg hurting, up by the hip groin area.  That night she woke up crying in pain over it so much that she woke others and I had to move her to our room.  I gave her some pain meds and that helped her sleep.  Wednesday morning she woke up and was still complaining.  She did not want to walk on it and if i picked her up, it hurt and it was awkward to carry her.  It was hard to find a way to hold her without her complaining.  We went to the hospital for our appts.  First it was ENT to check her throat again.  We had to wait a little bit but it went well.  She did awesome and everything looked perfect!  Then we were down to chemo.  It was crazy busy in there, we had to wait in waiting room for like an hour.  We finally got called back and our Doc was busy so we saw a different one.  Counts were good, temp good, but she was down almost a pound.  We talked about her leg/hip and they sent us down for xrays, which came out fine.  It was a small wait there, but in and out pretty fast.  Then back to chemo where everything went well.  It was a long day, but we got home around 2 and we were doing well.

She started acting tired and took a nap on the couch around 2:45.  At 4 I woke her and took her temp cuz she seemed like she prolly had a fever.  She was 102.1!  So, I knew I would be going back up to the hospital.  I finished feeding the baby and called the Doctor.  Then got Taylor and mylsef ready and jumped in the car.  The Doc called back right as we were about to leave and said they would let ER know we were coming... I was happy that at least we were getting this done early in the day so that we would be home at a decent hour and get normal sleep... that did not happen... finish this story in another post...

Chemo #9, feelin good and lots of gifts!

Well, this past week you would have never guessed Taylor was on chemo (except for the fact she is bald and has a feeding tube).  She has been doing awesome!  She has her voice back, she is playing a lot, she is active (almost back to her full crazy little self), she has been eating okay, and she has not complained much about her tummy hurting at all!!!  It has been so nice!

Yesterday we went back to ENT (ear, nose and throat) and he didn't have to scope her.  he saw her and automatically could tell how well she was doing.  She was playing in his office and talking a lot.  He checked her out a bit and called the Oncologist.  They decided not to scope because he was going to give 50% dose again this week.  They will wait to scope next week before going to 75%.  He also said he will let me see him Wed morning instead of making two trips from now on!  How nice of him.  He isn;t in clinic that day but is in the hospital.  He said he will run up to see Taylor in between his surgeries.  So nice!

Today went well.  Her poke didn't hurt, her weight was up a pound, and her count is 10050!!!  LOL  She went from almost being too low last wk to being extremely high this week.  I asked him about it and he says she is prolly fighting a virus or something.  I said she is fine, no signs of anything.  So all is good so far.  I asked the Doc if we needed to add a week onto her schedule since we missed a dose.  he said we would not add one, we just skipped.  So we are still on the same schedule to be done in the 10 weeks time.  So this was week 9.  She will get one more and then have 2 weeks off.  She painted, played games, and watched tv while getting infused.  I spoke with our friends again today and they are doing well too.  The teenager had her older sister with her this time, so it was nice to meet her.  I am glad we will stay on the same schedule with them.

Some ladies at church stayed after on Sunday and had a headband making party for Taylor and her sisters.  Then one of them came over to deliver them.  A ton of hairbands and 3 tutu dresses were a big surprise to the girls.  They loved it.  Also, today at the hospital an organization was there to give gifts to the kids at the clinic.  It is called NEGU.org and they gave out Jars of Joy.  This was started by a 12 yr old cancer patient while she was going through her treatment.  The Nashville Predators hockey team mascot Nash was with them so all the kids got to meet him and take their pic with him.  I forgot to mention last week that our friends brought Taylor a Caillou doll (we had given their little boy this a few years ago and he wanted to bless Taylor with it since she wanted to have one since Caillou was a bald 4 yr old too).  He loved this doll, slept with it all the time, but he wanted her to have it.  Such a sweet heart of a friend.  What a blessing all these gifts are to our family during this time.  Thank you everyone who has been blessing us and praying for us.

Chemo Week #8

Taylor had a really good week after missing the chemo.  Within a few days her voice was starting to com back some and got a bit better each day.  It is now almost all the way back to normal!  She was also full of energy and back to her normal crazy self.  She was eating almost as well as she use to as well.

She did end up having the UTI and has been on meds for that and it is better, it was from E Coli somehow.  Anyway, she had started complaining of stomach pain really badly in the mornings and so we thought maybe the feedings were bothering her.  So we cut back on the amount we were giving and it got better.  In talking with the Dr yesterday about it though, we realize that may have bene coincidence with the UTI, maybe the pain was from it and as she got meds at the same time as we backed off food, it got better.  So we are to go back to 2 cans of pediasure over a 12 hour night period.

Mon Taylor and her big sister were playing and her feeding tube got ripped out of her nose.  So she had to go without feedings for 2 nights.  We got it put back in yesterday, that is so not fun.  Poor Taylor.  Hopefully it stays in this time and nothing makes it come out.

Tues we were back at ENT to get her vocal chords checked out.  They looked back to normal and the Dr could definitely hear her talking this time.  So we were clear for going back to the Vincristine drug on Wed.

Her redo of Chemo dose 7 went well.  They did a 50% dose of the Vincristine to watch for the next week to see if it will mess with her voice again or not.  If it goes well, then next week it will go up to 75%, then 100%.  If it does mess with her voice, then we will stop Vincristine and try a different regimin.  She is down in weight just a bit and her counts are low this time, at 580.  I thought that was strange.  So anyway, we have to make sure she doesn't get around sick people for now.  She feels fine though and is having fun playing.   Even today, after having chemo she is playing and eating and being herself!  It is awesome!  However, last night she started the fussing again a little bit.  She woke me up crying at one point and when i went in there, she said she threw up.  I looked around but it was only a little spit up.  We went potty and cleaned up her hand and she went back to sleep.  I did leave the bucket next to her bed just in case though.... which I am soooo glad I did because a little while later I heard her get up and throw up.  She threw up a lot, all in the bucket.  So I stopped the feeding.  i don't know if she is nautious from the chemo or if the feedings are bugging her that bad.  So we will just have to wait and see.  I am glad to see she is fine today!  She has been eating well and playing all day!

Chemo Day 7 & Voice Issues

The last couple nights Taylor has been complaining about her tummy a lot but sleeping okay for the most part.  It seems that the tube feedings may be bothering her or something.  I cut the feed off in the early morning today because she was complaining a lot.  At one point last night she apparently stood next to her bed and peed on the floor???  That is a new one.  She has been eating ok over the past couple days; not good, but at least she is eating here and there.  She still gets tired a lot and doesn't want to do anything we ask her.  She won't clean up her toys, put her clothes away, etc.  And the other day some friends came over and they watched tv.  When it was time to stop tv and go play, she protested, hid under her blanket and fell asleep.  She wants to watch tv all day long and, um, I don't care how sick someone is, that is not a good idea.   So we have been having to deal with her disobedience and protesting in things.  It is not easy to discipline a "sick" kid.

Today was Chemo visit #7 and review of 2nd MRI results.  We were in clinic pretty fast and she got accessed and blood drawn, then stats taken, and then straight to a room.  I had mentioned to the nurse about Taylor having pain during urination and bowel movements and she thinks it may be UTI, so we needed to get a urine sample.

 Once in the room, minutes later the Doc came in, that was fast!  He says the tumor looks stable.  They didn't have the full optic scan this time for some reason so he could not see all the angles, but the before and current pics look about the same.  There may be some slight shrinkage in one tiny area but it is hard to tell.  In this kind of tumor, the success is not based off of tumor shrinkage or disappearance, it is based off of no growth or no extra loss of her sight.  So, things are looking good so far with the tumor.

While discussing that, I brought up the issue of her voice.  Since Doc was on vacation last week, I did not get to talk with him about it.  When I mentioned what was going on, he immediately knew what it most likely was and had some concern.  He said the Vincristine (one of the 2 chemo drugs she is on) can cause vocal chord paralysis and that we needed to get it checked.  So, he called the Ear Nose and Throat Doc upstairs and got us in right away to get that checked out.  So, off we were to see him.

We got in right away, and the Doc was really nice and had already reviewed Taylor's file and everything.  He knew exactly what the oncologist was talking about.  We talked and then he did a little check on Taylor.  Then he gave her some spray in her nose to numb it so that they could do a scope of her vocal chords.  It only took a few minutes to do the procedure while I held her in my lap.  Then a few more min for him to review the video.  He said that the vocal chords have movement so they are not fully paralyzed, but they are not fully working as they will not close all the way.  This can be causing her voice inhibition and can cause her coughing when she drinks.  It is not good for your vocal chords to do that because it can cause liquid to go down the wrong tube.

 So, we went back to chemo clinic while the Docs talked on the phone.  Soon after, the Doc comes out and says that we will hold off on doing chemo today so that they can watch and see if the voice gets better off the Vincristine.  It is supposed to come right back if that is in case the problem.  Then, Tues we will go back to the throat guy to see if things look better.  If so, then chemo will be on for Wed but at a lower dose and then the throat Doc will check her monthly to keep an eye on it.  (great just what Taylor needs, another specialist and our family another set of appts to go to).   If the voice doesn't get better by Tues, then oncology Doc says we will have to change meds and get a new regimin set up.  So, we are in a wait and see mode right now I guess.  

We did get her numbers and they were really good, 1750 I think!  Her red blood cells are still a bit low, but not enough to need to do anything about it.

On the way out, we ran into the teenage girl and her mom.  It was good to chat with them for a min.  She is doing really well, no major problems.  She is on lots of different meds for various things, like Taylor is, but I think more so.  She said she feels like a walking pharmacy.  We know how she feels!  She also still has her hair.  Her MRI was last night so hopefully they got good news today at their appt.

Taylor has been low key today, not very active.  Her tummy is still hurting and she hasn't really eaten much.  I just heard back on the urine test and it seems she prolly has a UTI.  So they are sending a scrip for that as we wait on the full culture to come back in a couple days.  Hopefully with her not having chemo this week that we will have a good week!

Genetics, NG Tube, tummy pain, MRI

Taylor has not thrown up since wed, which is awesome.  So I guess that was the end of that bug.  Thursday she woke up after an awesome night's sleep hungry and ate a decent breakfast.  Then, soon after that she was on the couch all day, really tired and no energy.  She took a long morning nap and was a little whiney after and then watched some tv.   She kept complaining about her tummy hurting.  She took another nap and woke up with the terror nightmare stuff.  This one was really bad.  It took forever to snap her out of it.  It is so hard to watch her like that and also to not to be able to help her much.

Friday she woke up, after another pretty good night sleeping, hungry too!  So that is good.  But she only ate a little this time.  During devo/worship time she danced a little bit.  She had a genetics appt today, so it worked out perfect for getting the NG tube put back in.   Taylor felt great today.  The genetics appt went really well.  She was actually scheduled to see the NP today instead of her normal MD, but since all this new stuff is going on, Doc made a trip over from her clinic to see Taylor.  The NP was really nice and the Doc was really sweet, checking on how we all were doing.   We really like her.  There was really nothing much to talk about at this visit thought since we have been going through everything with the tumor and have had many checkups though all that.  When they weighed her she was back down to before she gained the weight with the NG tube help.  They weighed her without her boots/  She was also an inche shorter?  So I am thinking that something is messed up in their calculations from one scale to another.  Who knows how much she has really gained or lost.  When we were done, we went across the hall (convenient that this doc is on same floor as chemo unit) and waited for the nurse to come get us.  It was a bit of a wait (even though I called hours beforehand for them to expect us) but then it didn't take long to ge the tube back in.  Again, she hated it of course.  They put the tube on the other side this time and it seemed to bother her a bit more than the last one.  She kept rubbing it and saying it was hurting.  After the first day she stopped rubbing on it so much.  Now it is just here and there and no complaining.  She ate ok today.

Saturday she woke up after an ok night sleeping.  I am wondering if the tube feeding affects her sleep.  She wasn't hungry and was not that energetic.  She wanted to be with me a lot, so daddy took big bro to baseball practice instead of me.   She started feeling more energetic later in the day and played outside for a little bit.  She complained about her tummy a lot this day.  So, I gave her pain meds and nausea meds to see if either of those would help.  She seemed to feel better later, so I guess at least one of them did the trick; not sure which though lol.  She ate pretty good part of today.  SHe has been scared to go to the bathroom lately.  She says it hurts her teetee.  Right now I think she is dealing with a small constipation type issue to add to the pain factor down there though.

Sunday she woke up and her tummy was still hurting.  She slept ok the night before, no major issues.  The time change messed us up a bit and her tummy was hurting so much that we stayed home from church.  But the kids and I had a good time watching veggie tales and listening to worship music.  Then Taylor stayed sitting with me while I watched our church on tv.  I gave her some more meds for her pain.  She still doesn't like going potty.  I have to keep making her go, but she cries.  It is like she isn't potty trained anymore, I am so not wanting to divert to those days, ugh!  She finally had some good potty time and she was feeling a little better, not complaining about tummy anymore.  She played well today and she ate really good (for Taylor anyway)!  She is into sliced cheese and cherries lately.

Today, Monday, is her 6wk follow up MRI.  She slept well last night and woke up hungry this morning, although she is not allowed to et today until after the MRI is over :(  Of course the one day she can't eat, she wants to.  She wants to so bad that she is throwing a fit and crying about it.  Poor thing, it really sucks... chemo sucks!   Anyway, this morning was crazy.  I had to get brother off to school then turn around and come home and get the girls ready because my oldest daughter had an OT appt.  All of this in the pouring rain.  I didn't even have time to eat breakfast or feed the baby.  So, dropped big sis at OT then took the lil girls with me to Starbucks.  We ran in and then I realized I forgot the baby bag.  So we had to run back out into the rain to get it and go back in.  Doing that with a whiney "sick" 4 yr old and an infant carseat and a bad back is no fun.  Taylor got some appljuice but then refused to drink it because she was hungry and she wasn't allowed to eat.  So she protested and cried almost the whole time we sat there.  I bribed her to behave by promising her whatever she wanted to eat and a gift later that day if she could be a big girl and make it through the day.  After OT, I had to drop big sis off at a friends house for the day; this was a big help.  Then I had a couple of hours at home to get finally get myself ready for the day and relax a bit.

We got to Vandy about 15 min early.  I grabbed a subway to eat when I had a chance and then went to check in.  They called us back exactly when they said we should be there!  Then, they got everything done really fast and had her taken back right on time!  So the baby and I went to sit down and eat lunch and that is when I started to update this blog, lol.  On hour later, they called to say she was already starting to wake up and to come on back to the room.  So I packed everything up and headed down there.  She was sleeping when I got there.  We were able to rouse her about 15 min later.  She woke up and said I want some coffee, LOL!  She is too funny!  She knew it was now time to eat and drink.  So, they gave her some sprite and I gave her some cheetos, then within 30 min of coming out of the MRI, we were out of there!  We headed back up to the cafeteria and she got some hot cocoa and a cookie.

She is doing well, still a bit clingy to me all day, but that is expected after an MRI.  She ate pretty good at dinner time and now she is chilling before bed.  I am guessing we won't hear the results until we go in on Wed.  Will update when I can!

Chemo #5 & #6, Make a Wish

Chemo Day 5 went well.  It was a quicker visit since she only needed one of the Chemo meds.  She gained a pound since they put the tube in that last week.  So that is awesome!  Her # is also up to like 1150.  She has not gotten sick at all this past week either.  Her hair did finish mostly falling out, so we had to trim up some straggles.  She has a bit of hair left, sort of like a baby has.  With the hair missing and the tube in her nose and her being so tiny and skinny, she looks like a really sick kid.  But she is pretty healthy and doing well.

During the week after visit 5, we started noticing Taylors voice changing.  She now talks extremely soft.  It is so cute to hear her but it is really weird and we are not sure if this is something that is wrong with her or just a little side effect that has no negative meaning to it.  It affects everything; her talking, laughing, crying, etc.  When she has her freak out moments in the middle of the night, it makes them sound worse than they are.  It is like she can't breathe or something.  There is not much sound and a lot of breath type sound and she is all disoriented and crying and moaning.   It is not fun to see her like that.  It is hard to know what to do.  It is not easy to snap her out of that state.  She has been doing this waking up stuff again a lot lately.  I really hope this doesn't continue the whole year of chemo!

Last weekend, the Make a Wish people came to our house for a visit.  They were really nice.  We talked about the Make a Wish program and what wish Taylor wants to make.  It was hard to really get her to understand what they were there for and how to make a wish.  They had some good ways of getting info from her like what she likes and such to help us all get an idea of what would be a good wish for her to make.  We ended up choosing to go to Nickelodeon Resort where she can meet Dora, play at a water park, go to the beach, and anything else in the Orlando area that we can squeeze in during a trip down there (like maybe lego land and disney).  So we will get to find out if that wish can happen or not in the near future.

This past week a lot of our family has caught the stomach bug that is going around.  First my baby, then my hubby, then my oldest daughter (though no vomit for her), and now Taylor and my oldest son.  I am tired of people throwing up!  Taylor threw up yesterday morning all over the kitchen.  She hasn't been eating much at all the past couple days!  But the feeding from the tube the night before went everywhere.  Last night Taylor got fever that spiked at 100.6 for maybe half an hour an then went down to 99.6.    She freaked out a lot last night and really complained about her tummy and then threw up again.  I called the Doc and this time this one said that it was ok to watch the fever like that and that if it goes down below 100.4 in an hours time then we don't need to go to the ER.  That is nice info to know, wish they would have mentioned that a long time ago!  It could have saved us two trips!  I am glad we decided to watch it on our own!  I was awoken this morning an hour early to my son throwing up in the bathroom.  Then, Taylor threw up again and this time it ejected her feeding tube out of her mouth so we had to remove it.  Fun times!

Today was Chemo day 6.  It went well.  We were taken right back and put in a special room since Taylor has a stomach bug.  She got to watch a Dora movie which made her happy.   Her number is 610 which isn't great but still good enough.  They say her weight went up 6 oz which I was surprised by due to the week we had.  But then I realized later that last week they weighed her without her shoes and today she was wearing boots and they didn't make her take them off... so that could be causing the gain.  Who knows.  They are waiting to put her tube back in until they know she is done being sick.  So we might be going back up there Fri to do that.  It was another short visit as only the push med was needed today.

Weekend #4

Thursday went pretty well.  Taylor seemed good most of the day but still tired.  That evening she started getting a bit of a fever again so I cancelled my bile study.  I also was in dire need of grocery shopping so I got Taylor set up on the feed (on the couch again) and went out after kids were in bed to get the shopping done... I have never spent that much at the grocery store before, wow!  It was a much needed trip.  We hadn't really been on a full trip in like a couple weeks.  When I got home and put everything up, I checked Taylor and she had gotten up to 100.3 again.  The hubs and I watched some tv and before we went to bed I checked her again.  She was back down!  SO happy!  She slept great again!  I am not sure if its the nutrition, the couch, or what but I like it.

Friday went awesome!  Taylor was feeling good; was seeing my little girl again.  It was nice to see her personality.  She got to play outside today and was so happy about that.  She had a lot of fun out there with all of us.  Big sister learned how to ride her bike without training wheels today!!  Such an accomplishment!  We are excited for her.  Big brother is practicing baseball for his skills evaluation on Saturday.  Little brother is trying to get better at riding his bike too and being safe in the street.  It was nice to get out on a nice day with all the kids while the baby napped.  It has been a while since we did that.  I am SO ready for spring to be here!

Saturday went well too!  Taylor had another great night on the couch and the feedings are going well. Although the baby had a bad night of fussing, blah!  Taylor is eating a little bit better during the day but I still have to tell her to eat and make her eat.  I am hoping this gets better!  She got to go on a hang out with Daddy at the park and she just loved that.  The other parents were all sweet to Taylor when they saw her and told their kids to let the little girl play.   LOL.  Last night she slept in her bed and I had to get up like 3 times with her fussing again.  I don't get it!  Maybe it's her bed that is the problem?  Or this is just coincidence?  I wish I knew.  These past few days you could really see her hair falling out.  Pieces of it are all over her clothes and pillow and when you touch her hair they come out.  So, I had to start brushing it more so that it would not make such a mess.  It is so sad to watch her hair slowly disappear.   This morning, I had her wear a hat to church because her hair is really to the point where it is extremely thinned out and uneven and makes her look like a sick kid (that together with the tube in her nose).  It is almost to the point where we just need to cut it off.  We are ready with lots of hats and do-rags though :)

Whirlwind

Well, Wednesday after being home for a couple hours, I got a call from someone at Vandy saying that we left without getting any training on the feeding tube and that we really needed to have that so we can make sure it is always in properly before we try to feed her through it.  They said it wouldn't take long and they were sorry for the miscommunication but we needed to come back up there.  So, the kids and I got ready and off we went.  

We got there pretty quickly and were taken back within a few minutes.  Then the nurse showed me what we needed to learn and we were out of there in about 15 minutes.  It was time for snack so we stopped for a quick bite that we brought with us and then we were on our way home.  We were lucky to get out of there before traffic started up!  We only hit one patch of it on the way home.

Taylor did good the rest of the day, but she still didn't really eat.  At dinner time, the house was a little chaotic and the Lady with the feeding pump showed up to drop everything off and teach us how to use everything.  At the same time, the baby started getting fussy.   Thank God someone brought us a meal this night, or that really would have been a mad house trying to cook.  The lady was really slow and didn't really know the equipment at all.  I was figuring it out before she was and that combined with a crazy day, a whiney hungry tired baby, and dinner being put on the table with chatty kids, made for a stress bomb in dear old mom.  It was really chaotic.  I was starving but had to be with this lady to learn this stuff; but I tried to eat while the lady was doing stuff and talking to me and I went back and forth between food and baby and looking at machine.... it was insane.  The other kids were vying for me at times too.  Finally the lady left, I got to finish eating, and got the baby fed and in bed... I have never been so stressed in my life.  I am not sure exactly why I got like I did, maybe the day after day after day and lack of sleep and load after load of LIFE... but I was so ready to pop;  I kept trying to breathe and it just wasn't enough to bring me down.  Every little thing was amplified.   I had to just get away from people for a bit.  On edge was an understatement...  I asked friends for prayer and soon after I calmed a bit and got Taylor set up on her first feed.  She slept on the couch.  Once all the kids were down, I was finally mostly diffused and was able to relax a bit that night.  Taylor slept great and the first feeding went great as well.

Chemo Day 4

Last night she was in and out of sleep a couple times.  One was a doozy and I had to get her to wake out of her fit and calm her down.  We had to get up early this morning to be at a 7:30 appt for the chemo, blah.  She was a bit whiney, but who isn't that early in the morning?  We got there a little early and grabbed some breakfast in the cafeteria.  When we went into the clinic, one of the nurses gave her a doll that was bald.  It is a gift from some group that makes them and leaves them for kids to have.   Then they got her tubie in and took her blood and she did awesome!  I think that was the best time yet!  Then we set up the candy land game to start playing.  However, we were then called away to get her stats and go to a room to see the doc.

Her number came back 540!!!  Boo!!!  So, we got a clearer explanation about the numbers.  A neutrphil count of 1500 or lower is considered neutropenic.  1000 or lower is like medium neutropenic and 500 or lower is DANGER neutropenic.  At that point is where they worry and admit you to the hospital.  So, Taylor is almost to that point right now.    SO, if she gets fever again, most likely we will have to be admitted to the hospital.  Pray that she does well this week and doesn't get sick.   Also, since her weight is doing so poorly, they are afraid of her being malnourished.  So, we talked to the doc and a nutritionist and they suggested a feeding tube.  While we were talking, Taylor was curled up in my lap almost falling asleep.  I guess those meds do make you tired.   I stroked her hair as she lay there and I realized that some of her hair was coming out.  So, I guess that process has started :(

Anyway, we went back out to the treatment area and someone else had taken her seat with the candy land game set up.  So she started crying and I had to calm her down.  We picked another chair and then the child life specialist came to see what was wrong and she said she had another candy land.  She left and quickly returned with the game!  She is a hero!  We played that and some other games while she got her chemo.  Then it was time to get the ng feeding tube.  The hero came back with us and brought a doll that had a tube in her nose so she could see it.  She explained to Taylor what it was and why she needed it and what would happen.   You could tell she understood; at the end she started getting sad and scared.  It was so cute and sad at the same time.  Then came the nurse.  The She did NOT like getting the tube in at all.  It took 4 of us to get the job done and she screamed bloody murder.  Poor thing!  i hate that she has to go through all this stuff.   On our way out the door (10:30), we ran into the teenager.  She had a bad week as well; although she didn't have to go to the hospital for anything.   Her hair is also starting the fall out process.  It was good to chat a bit and then we were glad to be on our way.  It was hard to get there early, but it was nice to get in and out so fast and get to pick whatever seat we wanted.

Taylor fell asleep on the way home.  She looked so tired and "sick" like.  We picked up her siblings from our friends house (which was so awesome the she watched them and they got to have a play date!!!) and then we went home to eat lunch.   She was not hungry, so she didn't eat till like 1pm.  She is still a little whiney and looks really tired but she is playing video games.  The nutrition people are supposed to come by dropping off the machine and "food" for her tube feedings.  She will be getting feedings during the night while she sleeps.  This should be interesting to learn to deal with.  Anyway, Here is to hoping for a good week!

ER #2 & end of wk 3

Well after posting the last blog on Sunday, her fever went back up to 100.6.  So we called and were sent back to ER.  This time it was only 7pm and this trip to the ER went much better than Wed night's.  The doctor was much better as well as the nursing staff.  They took her stats as normal and she is down to 26 lbs.  That is not good!  She has lost 2 lbs since starting chemo.  It took her a year to gain 4 lbs and now half of it is gone.  They took her blood and ran the tests.  This time her neutraphil number was 1080.  They say that is still a safe number and sent us home after another dose of antibiotic.  We were home by 12:30.  Her sleep was again interrupted by crying and screaming and tummy pain.  Bummer!  She had some tylenol around 1am and had no fever the next day.

Monday was pretty uneventful, which is good.   She ate better this day.  She even got a little bit carried away in playing with mer brother Mon night and I had to tell her to calm down and be careful.  She slept good Mon night except for one time waking up coughing like crazy.  Tuesday was a good day as well.  Still no fever!  We had her eye checkup today.  She did great; they always say how good she is and cooperative.  She was able to complete a seeing test looking at letters this time.  Her vision is 20/70 which is still pretty good.  The doc was happy and said they hope that the chemo will keep this vision or maybe even make it better.  So we shall see.  We also were finally able to pick up the scrips for her pain meds and apetite stimulant.  Supposedly, both these meds can make you drwsy.  This should be interesting.  When we got home, I gave her the first doses.  She ate pretty well this day.  For snack time she wanted a whole meal :)  She is still being very picky though so I just let her eat whatever she wanted.

Weekend #3

After posting the last blog, Taylor (still whiney a bit) fell back asleep.  She took a good nap and woke up feeling a little bit better.  She wanted a bath and I said she could have one after she eats.  Then at dinner time we got her to come and eat a little bit.  As she sat there, she complained about her tummy and threw up in her plate.   SO, it was off to the bath we went.  All of a sudden she felt much better.  She went potty on her own without being whiney or needing me or anything.  And in the tub she played and pretended to swim and had a grand old time.  I let her play for a while in there since she was feeling so good.  After a while she finally realized it was getting cold in the water and she jumped out.  She got in her jammies and was like a popsicle.  I wrapped her up on the couch to warm her up.  She slept really good that night!  Thank the Lord!

Friday morning, she woke up and was feeling good.  She ate some breakfast without me making her.  She played off and on throughout the day.  And she slept great again Friday night.  She was fever free all Friday!  Saturday, she woke up well also.  We were out cleaning the garage and she wanted to play outside.  So she rode her bike around the driveway for a bit.  It was cold so I didn't let her stay out for too long of a period at a time.  For lunch we were able to to a break and go to a local Cafe that just opened.  Taylor did well while we were out and she was able to nibble on her lunch.   I wish she would have eaten more though.

Last night wen wel also.  She again slept all night.  It has been so nice not having her wake up constantly crying and complaining about her tummy or freaking out.  Praise the Lord!  She did come in our room in the middle of the night however.  She has still been complaining about her tummy too.   Last night me and my son started having scratchy throats.  This morning mine really didn't feel good and the baby was letting me sleep in so I decided we should watch church from home today.  That little bit of extra bedtime was much needed for me.  Taylor was whiney this morning but ate her breakfast!  The kids watched tv for a bit and then we turned on church.  It was at this point that Taylor had curled up on the couch next to me.  Soon after church started she fell asleep.  So, I figured she much not be feeling well again.

She woke up when it was over.  She was whiney and didn't want any lunch.  I checked her and she had low fever, 99.3... a little later it was 99.8.  It stayed there for a while as she rested on the couch all day watching tv and playing the kindle or just sitting in my lap.   She has been sipping on her pediasure, but thats about it since breakfast.   I took her temp again a bit ago and it was 100, then 100.3.  I was thinking and praying, hopefully it will stop there and retreat.   I just took it again and it is now between 99.4-99.8  So I guess either way, it seems to be going down.  Hopefully that is the case.  Will shall see...

Trip to ER

After Chemo, later during the day she was complaining about her tummy more than usual.  I thought this was odd.  Last night Taylor left the dinner table and laid down on the couch and fell asleep.  I checked her after a while and realized she was starting to get a fever.  So I kept a watch on it.  Of course she kept waking up fussing.   I moved her to my bed after the rest of the kids went to sleep.  Her fever was slowly rising and she still kept waking.  When I went to bed around midnight or so her fever was hard to read.  I kept trying to get an accurate reading over the next 45 min.  I DID NOT want to have to go to the hospital.  It ranged anywhere from 99.8-102.  So, I was like, ugh!  I called the oncall Dr and they called back right away.  They said we had to bring her into the ER.  So, at 1:15am we were on the road.

It is amazing how fast you can get to Vanderbilt at 1am in the morning!  They were ready for us when we got there.  But this trip to the ER was different than any I have had before.  They didn't do things in the normal way I have experienced before.  They did not get her stats right away.  They actually never got her weight the whole time we were there.  They gave me a thermometer and had ME take her temperature.  That was odd.  Then a Dr came and talked to us, but I was not that impressed with the conversation.  Then a nurse asked if Taylor just had chemo.  I said she had and then he came in with a mask for her to put on and they moved us to a special room with glass doors and all the staff would come in with coverings and masks on.

Then, really long story short, she had fever and since she has a port we had to go to get her checked to see if there is a bacterial infection going on.  So they drew blood work and ran tests on it and also took a flu test.  (She did good when the accessed her port this time by the way, WAY better than earlier at Chemo) She started getting some sort of hives, so they gave her some Benadryl.  They needed a urine sample and Taylor didn't want to go.  I told the Dr's she would go if I took her and so off we went.  Weird that she didn't even want to get up to potty.  Later, one Dr (or nurse, not sure) came back and said Taylor's WBC count was down to 2.3 which is bad (normal is 4-12) and she said she had Neutropenia.  Which is when the immune system is very compromised and she is at risk for infections.   Which is weird because her number was 4.2 or something earlier when we were at the chemo appt. (before chemo her # was 10)  She then told me that they were checking with the oncology dept on what they want to do.  Later, the original Dr that we saw when we first came into the ER came in and said Taylor was fine.  That her counts were still safe.  ???  Now, I am really confused.  She said the cells that they worry about still have a good enough number so she is not at risk; she is just like any other kid and does not need to wear a mask or anything like that.  She is not neutropenic.  Then, they gave her an antibiotic just to be safe and gave her some tylenol as well.  When that was over we were all done.  They never mentioned anything about a bacteria test.  They never came back with any flu test results or urine results.  There was a lot more things that happened during this visit that bothered me, worried me, confused me etc.  I was NOT impressed at all.  I was pretty disappointed in the whole experience.  I was surprised to have that from Vanderbilt.  I even had to correct one of the "students" when she was doing something because she did it wrong... and I was not sure how dangerous that was... not cool.

Anyway, so we left and got home around 7am when the rest of my family was up and getting ready to take their brother to school.  Caught up with the family and got Taylor situated on the couch.  O looked at her and she looked pale.  I didn't notice that before.  I was dead tired, had not slept a wink.  So I laid down to take a nap.  The hubs took the kids out to school stuff and Taylor stayed home with me watching tv and sleeping.  After 2-3 hrs of a nap, I got up and contacted our oncologist about last night and wanted some real answers.  I am no longer confused.  The nurse was very helpful and informative.  They are waiting on the bacteria culture to see if there is an infection.  That takes 48 hrs.  The antibiotic they gave her was preventative, to protect her just case the test is positive.  So, no she is not neutropenic, no she doesn't need a mask, yes watch the fever but do not give her any tylenol or anything without talking to Dr., her neutrophil count is 2400 which is fine (below 1000 is where they get worried).  They still are not sure why the fever until the test comes back.   Nobody has mentioned anything about why the hives still.  We are to call back if her fever gets back to 100.4 or higher or anything else happens that we are worried about.  At that point they will guide us on what to do.  We have till 5am tmrw till the antibiotic wears off.  At that point, if fever is up, we need to call and will have to go back to hospital for another dose to protect her for the next 24 hrs until we get the bacteria test results.  So it is a wait and see type thing right now.

Since we have been home, Taylor has slept a lot.  She only slept off and on throughout the night.  So she was catching up.  But I finally had to get her up and make her awake and see how she is doing.  I needed to check her energy level, her desire to play, her temp, her desire to eat or drink, etc.  I had to force her to drink some water.  She was really whiney.  She still has fever but low enough.  I was able to get her to eat a few goldfish crackers.  I also got out a pediasure for her.  She did not like the 1.5 kind they want her to have.  So I switched to a strawberry flavored regular one.  She still didn't really like it or want it but I got her to drink some as she watched tv.  She still doesn't want to eat or drink.  She doesn't want to play or take a bath or anything.  She is still complaining about her tummy.  She was sitting there and started whining and saying the peepee was coming out.  I said well hurry let's go to the potty.  Again she didn't really want to.  While she was going she said it was hurting her tummy when she went potty.  I think I remember reading somewhere that this was a bad sign???  I will watch this from now on as well.  Then, I got her to sit and play with the kindle aps for a bit just now.  So, we will see how the rest of the day goes.  I think that is all for now, I will update important info as I can.