Fundraisers for Riley

For all you Brenhamites out there, here is the drive-thru fundraiser info for Riley. I'm not sure who all is involved with putting this together, but I do know it started with Mr. Joe Antkowiak and his high school co-op classes...Peggy Kramer and Barbara Kokemoor from Guaranty Bank quickly got on board, as well as Kristie Wensel from Bank of Brenham. I know there are more of you and I apologize for not being able to name you all...but thank you for all you are doing. The BBQ sandwich drive-thru will be on Monday, Feb. 11th at the VFW hall in Brenham from 4 to 6:30. The tickets are $5 and here is a list of just a few of the places you can get them - Bank of Brenham, any of the BISD campuses, the BISD tax office, LEAP, BISD Central Office, Tarlton Supply, MIC, Dan's Meat Market, Brenham Clinic, Tootsie's and Guaranty Bank. We do have a clinic appointment in Houston that day, but will come through Brenham on the way home...so be looking for us, we would love to say thank you in person.

For all you Hallettsvillians out there, there is a drive-thru scheduled in Hallettsville at the KC Hall on Sunday, April 13th. Details to follow as I have them.

Thank you, thank you everyone for all of your support and prayers. We will never be able to express how much this means to us. It is a very awesome and humbling experience.

Josh and Kari

Success

We are finally able to have the make up for the make up to the make up spinal tap under our belts...yahoo!! Riley had the procedure done in the clinic for the first time, and it was so much easier. It was a very long morning of waiting, but Riley did so great. We got in the room right at 8am, and the procedure wasn't done until almost noon...have I mentioned that I am not a patient person. For the clinic procedure Riley is not all the way sleeping, just kind of "loopy". It was kind of humorous to see her like that. She was laying there watching a movie, and then all of a sudden you could see that she was in a totally different world. She would try to talk, but her words would come out slow and you couldn't understand anything. I know I shouldn't have been laughing at her, but it really was funny to see her like that...and at least she doesn't remember any of it. She keeps wanting to know why there is a band-aid on her back, if she only knew. Once she was fully awake again, she had her 3rd round of the PEG shots in both legs and after waiting the mandatory 2 hours we were on our way home. It was a long day, but Riley had so much fun playing with everything. She found the doll they use to demonstrate procedures with in the play room, and she had a blast playing nurse with him. She would tell him everything the nurses tell her when they are accessing her port, he even had to have shots in his legs. It was great.

Riley's counts were great, I was a little skeptical about Riley's ANC being high enough...boy was I wrong. It was 240 last week, and 1650 this week...wow!! So, we were able to start her back on the nightly chemo pills last night. We are starting at a lower dosage, and gradually increasing back to the full strength. We did see our regular oncologist Dr. Dreyer, she did the procedure, and it was decided that we would start back up where we left off with the treatment plan. Which is great with us, because I was a little worried about Riley missing almost 3 weeks of planned chemo medicines. It also helps to push back the dreaded next phase of treatments...one that I am not looking forward to. She will be on a lot of strong medicines all at once, not to mention the stronger doses of steroids...definitely not something I am eager to deal with.

We do, however, get a week off from clinic. Which is a little scary, because our last week off from clinic we ended up spending in the hospital. Our next appointment is the 11th of February, she will have another spinal tap done in the clinic and she also has an appointment for an echo, or ultrasound of her heart. This is necessary to be able to start the next phase, because some of the medicines could cause heart damage...so they want to make sure her ticker is ticking like it should be. I also will be calling to schedule Riley for physical therapy. One of her chemo medicines, Vincristine, causes muscle weakness in the legs and feet. Since starting this medicine, Riley has had trouble going up stairs and especially getting up off the floor. We thought it would get better since she hasn't had this medicine since the 2nd of January, but it hasn't changed. Dr. Dreyer said this is normal, and she just needs some help getting the strength back. Fun times!!

Please continue to pray for Riley and the other kiddos battling this horrible disease. There have been a lot of young kids losing their battles these last few months, so please pray for their families as well. We will make it past this...

Strike two

You guessed it...another dry run. Riley's counts are still too low. So, everything is on hold again until Monday. Her ANC has only gone up to 240, from last weeks 220...so what are the chances it will make it's way up to 750 in less than a week? The doctor felt confident it will, but I myself am a little skeptical. They are still thinking what every monster viral thing hit her is still wreaking havoc on her bone marrow, which in turn produces the blood components. If the numbers continue to stay low they will do more tests to see why, but right now they aren't worried. They have assured us that this happens to most people during these phases, because it is count dependent. I couldn't get a straight answer on when her counts are high enough to begin the chemo again, if we will pick back up where we left off...or just jump back into where we should actually be at this moment as if nothing had changed. Everyone has a different opinion. We didn't see Riley's actual oncology doctor today, but I feel confident in whatever her opinion will be. So, we shall see.

In the mean time we will continue to do nothing. Riley has been feeling so great, and having so much fun. Our nurse Robin said it the best, this time off is helping us to regain ourselves to start again. So true, we needed this break to make sure the old Riley could return...and she has in full force. Nothing is slowing her down.

Riley just wanted to double check that Nana didn't have Mickey Mouse hiding in her ears.

Practice makes perfect

We had a great dry run yesterday, and now we at least know what to expect next time. It was going to be Riley's first spinal tap done in the clinic...which is all done exactly the same except Riley wouldn't be all the way sleeping, just kind of groggy. We kind of had a feeling that her counts would still be pretty low, so we didn't think they would actually do anything. Her counts were still low...her ANC is 220, hemoglobin and platelets were back up at 12.1 and 86. Turns out they could have done the procedure anyway...except Riley now has an ear infection so they called it off. She was also supposed to have her PEG shots again, but because we are still holding off on her nightly chemo pills they decided why only do one thing...so we went home. We are scheduled to go back next Tuesday to make all of this up.

Riley has been feeling so great since we have been home. I am pretty sure it has a lot to do with the fact that she has had no chemo since we went to the ER last Saturday. This medicine is what they call count dependent, so her ANC has to be at least 750 to be able to take them...and obviously we aren't quite there yet. So, because she has been feeling so good Josh and I decided to go up to Houston early on Sunday and treat her. We went to the Aquarium in downtown Houston, and she had a blast. They have a ton of different tanks of every kind of fish imaginable, along with white tigers and snakes. Riley's favorite part was the train ride through a tunnel of sharks, okay that was my favorite part but Riley loved riding on the train. She really couldn't care less about the sharks swimming all around us...there was even a saw fish. Riley also got to ride the carousel of sea creatures a couple of extra times for free because there wasn't a big demand for that in the 50 degree weather...not sure why.

Our week in pictures

Our cute new pink fuzzy hat
Attempting to eat the cupcake from Chloe's birthday party
Taking a ride around the block

Riley not feeling her best
Passing the time with daddy
She learned to love wearing the mask
Rocking on the front porch
Typing on the 'puter

Homeward bound!!!

We finally got the good news about 10 minutes ago, and we can't get the bags packed fast enough. Riley is like a whole new girl today...she is feeling so good. We have been pushing her baby dolls down the hall in a stroller all morning, and they are now taking a nap. She even made a new friend, Blaine (he calls himself the rock star). He spent a lot of time talking and playing with us as we sat on our front porch...then he went off surfing down the hall on his IV pole. Cute!!
Riley's counts have not really changed too much, but she has not had fever since Wednesday. Her ANC is up to 240 from 190 yesterday, and her platelets and hemoglobin have stayed the same...low, but the same. Riley is scheduled for a make up clinic visit Monday, but they won't really be able to do anything unless her ANC is above 750...what are the chances of that? If they are high enough she will have her make-up spinal tap and receive her chemo through her port.
So, we are now packing up the room and trying to figure a plan of where everyone will go. Josh is home with what we think is a stomach bug, and I am starting to feel a little puny myself. Hayden is better, but we still don't want to chance him giving anything to Riley. So, who knows. All we are waiting on is the intern to sign the discharge papers, and we are out of here...but we all know that could actually end up being an all day affair. Just for one signature. I so should have gone to med school!!

So close to being home...

I may regret typing this, but I think Riley may be on the uphill swing. She hasn't ran fever since last night, and is actually eating some of her lunch tray. She does continue to have stomach pain along with the diarrhea, and none of her blood counts have recovered. Yesterday they decided to bring out the big daddy antibiotic, Vancomycine, to treat the bacteria that was found in her urine culture from Saturday. This is what they call a broad spectrum antibiotic, and I think it may have actually helped kick out whatever was causing the fevers. This could also be why her counts have stayed so low. Her ANC is holding steady at 190, which is very low...and she basically has no white blood cells. Her hemoglobin is still a little low, but higher than it was a couple of days ago...and her platelet count is still dropping but hasn't yet reached the point where they would consider doing an infusion. Also, they have finally decided to oblige in our concerns for her tummy problems, and they are going to schedule Riley for an abdominal x-ray this afternoon.
So, all of that to say this...if she continues to have no fevers and her counts miraculously decide to go up we may actually be able to go home late tomorrow or maybe Saturday. So, please keep your fingers crossed on the fever issue.
As far as 9th floor TCH news there is a sweet young lady named Victoria who was waiting to be scheduled for her second bone marrow transplant. In the mean time she started getting fungal infections, and it is now in her blood and moving throughout her body. She is a very sick and her family is now having to face the possibility of life without their baby girl. She is loved by many of the families and staff of TCH so this is going to be very hard for everybody. Please keep Victoria and her family in your prayers, I can't even begin to imagine what they are going through right now. But, on a brighter note our sweet little neighbor Chloe is having a birthday today and they have big plans for celebrations throughout the day. They passed out cupcakes and lucky for me Riley isn't into sweets right now...which meant more for me!! So much for my new year diet being in this place...all they have is fast food and junk. Maybe next week I will start fresh...

Riley remains a mystery

Same story...different day. Riley is still running fever, and they still don't know why. They have now decided that there was a small amount of a bacteria in her urine sample from Saturday in the ER, so we are now going to get another antibiotic to treat whatever they found. The resident doctor that came in early this morning said they usually don't like to still see fevers after being on an antibiotic for 5 days, which means there may be some sort of fungal infection somewhere. But when the attending doctor rounded this afternoon they said nothing about that. So, who do you believe? Riley is still not eating, but her tummy continues to get bigger...of course they had no answers for this because she has good bowel sounds. She just remains to be a mystery. Although, I still think it's the cursed room.
I have tried to download pictures for the blog, but my connection is not fast enough and it is taking forever. I will add them all once we get back home. Thank you everyone for your prayers, please keep them up. There are a lot of sick little ones on the 9th floor, most of them with fever and also all the crud being passed around because of this crazy weather. Of course Hayden is sick, too. He went to the doctor this morning with a cough and fever, and was told he has a respiratory infection. It would be too easy to only have one sick kid at a time. But he is in good hands at Nani and Papo's house, he has a blast riding around on the lawn mower.
Hopefully we will have some answers tomorrow, or at least no more fever. I will keep you posted either way.

Quick update...

Well, nothing has really changed. Riley was starting to feel better and had not ran a temp since Sunday night, so they were talking like we were going to get to go home. Riley had something different in mind and spiked another fever about an hour ago. So, we will be staying for at least another day or so. Her blood counts have not changed too much...her ANC, or # of infection fighting cells, is 140 up from yesterdays 40. This is # that they generally like to see in the thousands, so you can see Riley doesn't have much to work with. Her hemoglobin, or red blood count, has dropped down to 7.6 so they are going to give her blood. They still don't really know what is causing all of this, and don't seem too worried about it. They continue to give her antibiotics around the clock, although this does nothing for her if it is truly viral. We are just going to trust that the doctors know what they are doing.
We were scheduled to go to the clinic tomorrow for chemo and the make-up spinal tap, but they have rescheduled that for next Monday. They have also put the nightly chemo pill we take at home on hold until she gets better, so this is a set back in her treatment...but they said based on the phase we are in it won't hurt our prognosis too much. So please continue to pray that Riley can get over whatever it is she has, so we can get back on track with treatments. One of the doctors we saw said they were thinking it is a gastro-intestinal virus that any of us would get, but because of her weakened immune system it is just hitting her harder. Let's just hope whatever it is leaves us alone...and soon.

Still here...

I am beginning to believe that room 914 is cursed...we can't seem to have a short stay when we are in that room. The doctor finally came by around 3 pm and said they thought we would probably be here until at least Wednesday if not Thursday. Her blood cultures were negative, so we still don't really know what we are dealing with. She is still running temps in the 100's, and still having tummy issues.
They are running me out of the library, ready to close. But, Josh is bringing the charge cord for my laptop in the morning so I will post more then. Just wanted to let you know where we are standing as of right now.
Until tomorrow...

Quick update...

We are still here, and still waiting. The doctors haven't made rounds this morning, so we still don't know anything. Riley tried spiking a fever in the middle of the night, but it never got above 100.8. Here they consider fever anything over 101, so she never got any tylenol. Right now it is 100.2, so to me it's a fever but not to anyone else. She doesn't seem to feel any better...just wants to lay around and watch movies. Which is a good thing because she isn't allowed to roam around the halls until we get all the viral cultures back. We have been sitting on our "porch" rocking, but that is as far as they will let us go.
I did get a special treat last night, as we were laying down to go to sleep. We were just snuggling in, as I got doused with what little dinner Riley had. Quck change of clothes and sheets, and we were good to go back to sleep.
I better get back, or my luck I will miss the much anticipated doctor visit. I will update when we learn something new.

Hanging out in 914

Just when you think you are going to have a low-key, laid back weekend...plans change. Riley woke up from her nap Saturday afternoon and felt very hot. Took her temperature and it was 101.3, and quickly started rising. So, we got to make the trek to Texas Children's ER, and because her counts were so low they decided we needed to be admitted for antibiotics. They haven't really figured out what the problem is, but they are assuming it is something viral. Her cough has started back up along with the runny nose, and she has still been complaining about her stomach hurting.

So, we are just sitting and waiting. She spiked another fever this afternoon, so we know we will at least be here until this time tomorrow to make sure she doesn't run anymore fever. We are hoping our regular oncologist will be in the clinic tomorrow and come to check on us. It's just so hard when you see so many different doctors, they all have different opinions.

I will update tomorrow as soon as we know more...if that actually ever happens. Until then we are spending time in our first home away from home, room 914. That's the room we were in the first week of diagnosis...it just feels right. Until then....

Feeling great in 2008!!

It's hard to believe that we are at the beginning of another new year. I continue to be amazed at how fast time is flying by. Riley is going to be starting Pre-K this year, and truthfully that scares the heck out of me. It doesn't seem like my baby should be old enough to start going to school, before I know it she will be graduating from high school...okay, so we'll take it one step at a time.

Riley is feeling so-so these days. She just finished her 5 day round of steroids yesterday, and it was no where near the experience we had last time. Even though it was only 5 days, you just never know what to expect. The first night she woke up hungry at 2:30, so we got up for some cereal and after 3 bites she was finished and ready to go back to bed. That's pretty much how the whole week went, she would be so hungry then after a few bites she was through. She still complains about her stomach hurting all the time, but we still have no idea what it's from. We are going to continue to give her the Zantac, an antacid, to see if maybe it is reflux...and also continue the "poop" medicine, Miralax, in the case it is a problem with constipation. Who knows!? She has also been more tired lately, but that also happened with the last round of steroids.

It still feels a little odd that we aren't going to Houston tomorrow, it is our first week off. It's also a little scary because you become so dependent on seeing a doctor every week to answer your questions...but I know that we will survive. Next Wednesday will be here before we know it. We're going to try to go down early on Tuesday so we can give Riley a much deserved outing...maybe to the children's museum or something. Although, all she really loves is staying in the hotel. Easy enough!!

We want to wish everyone a safe and healthy new year. I have a feeling this will be our year!!!

-Josh, Kari, Riley and Hayden