Counts

HgB - 10.1

Platelets - 43

ANC - 442

Yay!!! They're on the way up!

Counts

HgB 10.4

Platelets 23

TWC 3.8

ANC 418

So now the question is are her counts on the way up or on the way down still? We have to check again tomorrow to determine that.

Checking blood and hospital billing headaches

This morning I ran Gracie up to get her blood checked. We are waiting on the results now but Gracie had a great time. She met a little friend that was also getting blood taken. They spent 10 or 15 minutes coloring together in the waiting area. Gracie had also drawn a picture for her "friend" (Kerrie sp??) at the blood clinic. Kerrie is often the one that draws Gracie's blood but she is also the one that always gives Gracie a prize or has conversations with her while she is waiting. We also took some rice crispy squares to the staff there, as we are not sure how much longer we will need to be going there and they have been so good to us. In the mornings, Gracie often asks if we are going to the blood or cancer clinic that day. She is really excited to see her friends all the time. Anyway, things went pretty smoothly and we had a fun time again.

After I got home, I decided to call one of the hospitals that we have been dealing with about a recent bill they sent. They were trying to bill me $170 when I had already paid the last statement they sent me in full (all $1,600). I should back up here and remind you that I am an accountant. Accountants tend to be detailed about money and generally have a basic understanding of billing practices. I am no exception to that rule. In fact, I make it a rule to not pay medical bills unless I have detailed bills regarding the service performed, dates, etc. I keep a spreadsheet of how much they billed me, how much they billed my insurance, what went to deductible, copay, etc, how much they tried to charge above my insurance companies established limits, among other things. Often this seems like a bit of overkill as there is no real way to measure that they are charging you a fair rate. It is not like I could just go to the hospital down the street and ask for a better room or a better price for chemo drugs or a different specialist in retinoblastoma. However, I keep the information as a matter of principle and it has paid off a couple of times at least.

Anyway, back to my story. So I called the 1 800 number for the hospital and started talking to a billing clerk. I told her that I had questions regarding my most recent statement showing a balance of $170. I explained that I had paid $1600 on Feb 2 to clear my entire account (at least the portion that they had billed). She replied that I had paid $30 on a $200 account and so had $170 left. I assured her that I had the bill detailing that in front of me but that my most recent statement had $1,600 (including the $170 in question) and I had made that payment. Again she told me that I had paid $30 so had a $170 balance. I explained that there were several service dates on my most recent statement and that I had paid the amount in full and the hospital had applied my payment to the accounts but must have different amounts due than my bill showed. Again, I was wrong as I had paid $30 so had a $170 balance.

So I asked that she walk me through the service dates that I had paid or not paid at the hospital. She proceeded to tell me about several recent dates that they were waiting on my insurance company for collection. She still seemed determined that I had only paid $30 and there was no record of $1600 payment. Then she put me on hold for a bit and came back asking more questions about my account. I gave her the information and she seemed thoroughly annoyed but started reading the accounts that I had cleared for the last six months. The second service date was an amount for $170 (shocking- sarcasm definitely intended) but I waited until she read all of my accounts and payments. The payments surprisingly totaled $1,600 and were made on the same day (again shocking).

Then she said, "So you owe $170 because you only paid $30 on the December 4-6 service date where the insurance company said your deductible was $200." I ignored the fact that the $200 was a copay, not a deductible, though I think that distinction should be important for a hospital billing staff member but I had previously tried to explain it to her without much success. I explained that I had never received a statement or bill for the earlier service date, where I had owed $170. If she could kindly send a statement for that date, I would be happy to discuss with my insurance company how they should be paying that amount (I had already paid my $100 deductible for that day). I also asked if she would please apply the $170 to the December service date for which I had received a statement, then this would clear up further confusion. She hesitated but eventually agreed to send me the detailed statement for the $170 service and reapply the payment amount.

I still think that she probably does not understand why I called however, it was a testament to me that I should not just blindly trust any hospital administrative process with telling me how much I owe. A couple of weeks ago, I called a different hospital about a $160 charge that I did not understand. This lady was very friendly and tried to understand why I was confused. After a 10 or 15 minute discussion, she found out that the hospital had charged me twice for the same service and took the charge off of my account. So, while $330 is a small percentage of what my out-of-pocket medical expenses are for the past year, it still is better to not pay for something that was not owing to me.

As always, Gracie is doing marvelously through everything and we are grateful for the concern and prayers on our behalf. I am sure we will post again today with Gracie's blood counts!

A Budding Artist

Perhaps y'all won't be as impressed with this as I am, but this is Gracie's very own lego creation of a dragon. She didn't use a model and no one helped her, she just knew it needed a head, neck, body, wings and tail and this is what she came up with. Pretty good for a 3 year old, if I do say so myself! She's the Little Einstein's number 1 fan and they talk about dragons in one episode. I think that's where she got her inspiration from. Maybe she's got a future as a famous sculptor, or perhaps just a job at Legoland : )

Sunday morning

Gracie's counts from Thursday were fairly good for where she is in her chemotherapy cycle. Because of that we had to cancel an appointment to receive platelets on Friday morning. While this might seem good, it is kind of frustrating because, in all likelihood, Gracie's counts are so low this weekend that she should get a transfusion. The cancer clinic is only open weekdays so in order to get a transfusion today we would need to go to the hospital. The hospital is usually a longer wait, less fun for Gracie and more expensive for us.

Gracie is feeling great right now and we are having a hard time keeping her from bouncing off couches and running around the house. Hopefully she will be able to quietly watch a movie or play a game with her mom when I take her older sisters to church pretty soon.

We (especially Stephanie) will continue to monitor her for signs of low platelets and the on-call oncologist is ready to admit us to the Children's hospital should be need a transfusion. Hopefully all goes well and we find that her counts are going up tomorrow and she is done with transfusions!!

Thanks for all your concern and prayers. We have been truly blessed and know that it is, in large measure, because of your faith and love.

Today's Counts

HgB - 11.1

Platelets - 54

TWC - 3.0

ANC - 450

A Cute Story

Due to Gracie's high predisposition to skin cancer she's not allowed outside without sunblock on (SPF 85 - who knew they even made it that high). Last night her dad went to run an errand. Gracie asked if she could go too, but since it was dark and bedtime James had to tell her "Not this time." James left and Gracie ran into my bathroom. She came out a few minutes later and had smothered herself in her sunblock, she was very anxiously asking "NOW can I go with Daddy!" As if the lack of sunscreen was the only reason she wasn't allowed to go. I guess she hasn't realized that you don't need sunscreen if there is no sun. She always has been her daddy's little girl though, and she loves to spend all the time she can with him. Funny how kids minds work. 

A couple of transfusions

Yesterday James took Grace to the cancer clinic to get her counts checked. They were:

HGB = 7.1

Platelets - 12

ANC - 1500?

I'm not sure how the ANC can be as high as it was, but that's what they were. Last time they went up they said it was the tail end of the neulasta injection giving its last hurrah.  We'll see what they are on Friday. So needless to say Gracie got a transfusion of packed red cells as well as platelets. Much to my surprise they were on their way home at 5:15. She seemed to do well with the transfusions. Although when she got home and was so wired that she wouldn't go to bed I was wondering why low hemoglobin is such a bad thing. I kind of like lethargy, especially at bedtime.  Eventually she did fall asleep though. She's scheduled for another platelets transfusion on Friday. Hopefully this will be her last! 

Update on Gracie's treatment

Gracie has an appointment at the cancer clinic in Austin, TX tomorrow scheduled. We are planning to have a platelet transfusion done at that time. They will check her blood levels and see if anything else is needed. The last couple of days we have noticed increased bruising and Gracie has been a bit more tired than usual. We continue to hope and pray that all goes well with this last round of chemotherapy. She is actually going to miss all of her friends at the blood clinic and cancer clinic each month. She talks about them often and asks when she can go back to see them.

I just thought I would take a little space here and clarify where we are in Gracie's treatments. 10 days ago we spoke with Dr. P in Houston following Gracie's most recent EUA.

THE LEFT EYE

We were thrilled to find that Dr. P saw significant improvement in Gracie's left eye. There have always been two tumors in the left eye, one small and one medium sized. Dr. P reported that the small tumor was "flat." This means that the cancerous cells are likely all dead and the tumor will not grow again. The area where the tumor was is scarred but it has not affected her vision. The medium-sized tumor showed significant improvement, in that Dr. P noted the coloration of the tumor changing and some reduction in size. Dr. P feels that the laser treatments are finally working and should continue to work to flatten and kill this tumor. Should the laser treatments not work or the tumor start to increase in size we will have to consider other options. Laser treatments for these types of tumors are really the least invasive and have the fewest potential negative effects for Gracie. So, up to this point, we have only used laser treatments (shining laser directly at the tumor to kill cells) and the global chemotherapy (IV chemotherapy drugs each month that attack replicating cells throughout the body- which would include cancerous tumors) on the left eye. We will continue to monitor that eye on a monthly basis and use laser treatments until the medium-sized tumor is gone. We hope and pray that these treatments will be all that are needed.

While I can not give you an exhaustive list of treatments available, should the laser treatments not work, some of our options include:

Cyrotherapy- the use of extreme cold temperatures on the tumor to kill the cells. This would typically be done by getting access to the back of the eye and putting some sort of freezing agent on the back of the eye adjacent to tumor location.

Radiation plaques- a radioactive plaque would be placed on the back of the eye adjacent to the tumor location. This releases radiation to the concentrated area where it is placed and thus kills the cancerous cells.

Proton beam radiation- This is similar to laser treatments only using radiation instead of light and heat. Radiation is concentrated onto the tumors. Typical radiation effects a relatively large area around the target cells and has been shown to sometimes cause other cancers later in life for young retinoblastoma patients. Proton beam radiation results in less "fall out" for cells around the tumors and have shown great promise recently in treating patients. This technology is relatively new and not available everyone in the USA, however, Houston does do proton beam radiation.

Each of these treatments come with risks and benefits so will be considered carefully- if they are ever needed for Gracie. Dr. P does not do these three other treatments but has sent her patients to Dr. G in the past. We are fortunate that Dr. G will begin taking a leading role in Gracie's care sometime in the next couple of months. They are starting a new retinoblastoma center at the Texas Children's Hospital and Dr. G will be the head pediatric ocular oncologist. The timing seems perfect from our stand point and we have heard nothing but good things about Dr. G.

THE RIGHT EYE

Dr. P informed us that the right eye still has showed little to no improvement since the first time Dr. P looked at it. There remains large tumors on the retina and many vitreous seeds. While some of the seeds may have calcified (basically been killed) to some extent the tumors have neither grown or shrunk noticeably in the last 6 months. This is a bit of a quandary for everyone involved. There is a small chance that the tumors have stopped growing and will never grow again, given that no growth has been seen. If this is the case then the right eye can be monitored and left alone as it does not impact Gracie's vision. The seeds are not a huge problem in the short term but can cause problems and spread in the future (or they too could die and not ever be a problem). No one wants to remove her eye if the tumors are not growing and her vision is unimpaired but everyone wants to prevent the tumors from growing and leaving the eyes to cause bigger problems elsewhere. This brings many questions that we cannot answer until we see Dr. G and know what options we have. Dr. G is going to look at the right eye and let us know if there are any radiation treatments that are available that may help in her case. He will provide a his recommendations and then we will know what options are available. It is also important to see how the tumors progress over the next couple of months without monthly chemotherapy sessions. Whether the chemotherapy was stopping the tumors from growing or whether the tumors, in the right eye, had already stopped growing is unknown.

So basically we would love to see no future growth in the right eye and have to do no further treatments on that eye but to leave the tumors right where they are. This means regular (likely monthly) EUAs to check for growth. If no growth is seen then we would leave everything alone. If the tumors in the right eye ever start to grow then we will have to quickly decide how to proceed- radiation treatment, enucleation or some other option as yet undetermined. Because the tumors are so large and one is so near the optic nerve then it would be imperative to stop any further growth immediately. So our best option is that the tumors are dead in the right eye and we live month to month monitoring them to make sure they stay dead.

Gracie is doing remarkably well and we are blessed with the best family and friends that anyone would ever ask for. We have seen many little and big miracles throughout everything that has gone on and continue to hope and pray that Gracie will keep both her eyes. Thank you all for your continued love and support!

Today's Counts

HgB - 9,2

Platelets - 68

TWC - 2.7

ANC - 702

Her bone marrow is definitely getting tired. To give you an idea of what the cumulative effects of chemo are on bone marrow I'm going to post what Gracie's counts were on this day after her Jan and Dec Rounds. Her ANC is taking the biggest hit from month to month, but the platelets aren't liking this any either. But the good news is that this is her last nadir coming up!!!!

January

HgB 10.5

Platelets -65

TWC - 4.4

ANC - 1800

December

HgB - 9.9

Platelets - 133

TWC - 4.6

ANC - 2700

Gracie's Take On Her Hair

After about a week and a half of going back and forth between, should we shave it, should we not we bit the bullet. I was literally shaking when I went to do it and couldn't. James just went and got a chair and said "Come on Gracie, we're going to give you a hair cut." And that was all there was to it. She didn't fight, she thought it was pretty cool. She did mention once to James "Are you going to cut my hair like yours?" But she wasn't upset when she said it, she was just inquisitive. I think she thinks it's pretty great, no more having to brush her hair. Really what 3 year old girl wouldn't enjoy that? She's still absolutely beautiful and we were pleasantly surprised at how nice her head is shaped, we were kind of worried about that. She's been losing more and more hair everyday and because it was so thin any loss made a difference. That's why today we finally just did it. And we can rejoice in the fact that the chemo did the job and that Gracie is so incredibly happy no matter what happens. There's no keeping our Gracie down!!

Hair Cut for Gracie

What do y'all think of my first job as a hairdresser?

Stephanie gets to cut hair all the time but this was my first go at it.

Isn't she gorgeous! (Even with the not-so-subtle reminder of retinoblastoma in the right eye.)

Home Again

So how does it feel to be done chemo? Actually I have pretty mixed emotions. As I've mentioned before in the week preceeding the EUA I'm always nervous, usually starting Sunday night (she always has her EUA on Thursday). So I was nervous as usual, but it started a little early this time - maybe around Friday. But then after we spoke to Dr. P. about the EUA results the best descriptions for my feelings is giddy. I was so excited about everything being the last time. On Friday night James and I gave a cheer when they hung the last bag of chemo (I had fallen asleep by the time they took it down). I just thought that we only have to go through one more nadir, one more Neulasta injection, 3 more weeks of staying home from church and play group and all the other fun things we'd like to do, hopefully only 2 more platelets transfusions.

 As we were walking out of the hospital Saturday morning tears started to form in my eyes in the hallway. By the time we got in the elevators they were running down my cheeks and by the time we got to our car I was full out crying. Here we are done chemo. 6 rounds ago I thought we'd be completely through with this cancer by the time we were done the chemo. And we're not. I know cancer will always be a part of our lives now, but THIS cancer was supposed to be gone by now. And we're really not planning on dealing with another one, but we know we'll always have to screen. But right now the tumors are still there. We still don't know what treatments we're going to do next. Are we going to do radiation? Dr. M. assured me that because the vision is still so good no one is in a hurry to do an enucleation for the time being, but it's still on the table. These are why the feelings are mixed. I felt a mixture of pure happiness and stress. I wish this was over, but it's not, so I'm trying to focus on the positive.

 I still get giddy when I think about chemo being done. This morning I gave Gracie her very last Neulasta injection which is a huge deal because it burns like a son of a gun. She and I both hate it. We threw a mini party when it was done. Last night we had an end of chemo party and Grandma made us cinnamon buns and buns for desert and sloppy joes (have I mentioned how much I love it when family is here to visit). We plan on having lots of "parties" this month to celebrate the last of something or other. We've promised Gracie and our other girls a REAL end of cancer party when this cancer is truly gone, and we're getting excited for that and hope it won't be too far away. We're doing a "Go Away Cancer! Go AWAY!" cheer in our family, Gracie is getting really good at it. So we're going to continue being happy, continue celebrating that Gracie doesn't have to go through any more of this horrible chemo and the aftermath it causes and continue cheering loudly Go Away Cancer! Go AWAY!! And above all we'll continue to thank God every day for the many, many blessings that we have in our lives.

Stephanie

Chemo is done!!

The last bit of chemo just finished for Gracie!! It is 1:15AM and Gracie is just going to get fluids for the rest of the night, no more chemo!! We are so excited. It has been hard to sleep knowing that this was Gracie's final round.
Hooray for Gracie! We will celebrate tomorrow by driving home and getting a good night's rest tomorrow night. Maybe on Sunday we will make a special treat to celebrate Gracie being done chemo, our friend Noah finishing radiation this last week and another friend Isaiah who just started chemo in North Carolina. All three events seem to be important milestones in their respective treatment plans!
Many thanks to you all for your support and love!

Day 2- Round 6 (Final Round of Chemo!)

So yesterday we had our EUA scheduled at 11:15AM. They were a little behind but sent Gracie back at about 11:30AM. We spoke with Dr. P just after noon and were heading up to the cancer clinic just after 1PM. Gracie had been given morphine during the EUA to control any pain and so was quite drowsy most of the day. She slept much of the time in the clinic. We moved over the to the cancer unit at about 7PM. Chemotherapy started at about 11PM and continued for a couple of hours. Gracie did really well and was quite sleepy throughout. I woke up a few times to help her but I was quite tired as well. Stephanie seemed to sleep well.
For whatever reason the doctors had orders for Gracie to stop getting IV fluids during the night. This was fine by me because that would allow Gracie to move around without her IV pole the next day. However, after they stopped the fluids they had to hook her up again to get some Zofran (anit-nauseau medication). This seemed strange to me but I was not reasoning really well before 7AM. Gracie woke up at 8:30AM with an enthusiastic, "The sun is up and its good morning time Daddy!"
Gracie has been quite happy and perky ever since. She has eaten well and been happy to see all of her hospital friends. She has also enjoyed making crafts and watching Little Einsteins. Part way through the morning, one of the child life workers brought her a huge banner for the door. It says, "Congratulations Grace! Its your last hospital chemo." Gracie does not really understand it but Stephanie and I are really excited about it!
Things are going really well and we thank you all for your love and support.

Day 1- Round 6 (Final Round of Chemo!)

This is a quick update- hopefully I will get a chance to update further later tonight.

We spoke with Dr. P today and got great news! The tumors in the left eye have responded well and we are going to continue treating one of the tumors with laser treatments while the second looks to be completely gone!

We have not seen any change in the right eye for the last six months so it remains a bit of a mystery. Thankfully the tumors in that eye have not grown. We will likely be meeting with another doctor, Dr. G, at MD Anderson in Houston, to see of there is anything he suggests and because he will be heading the new retinoblastoma center here at Texas Childrens. Next month Dr. P will still look at Gracie and treat her left eye and make sure things are not growing. Sometime in the next couple months we will at least consult with Dr. G.

We are excited about the progress today and thank you all for your prayers. They are working!

Friday's Counts

Apparently they called and left a message on our voicemail with these results on Friday, but our voicemail isn't always 100% reliable.

HgB - 9.3

Platelets - 154

TWC - 3.6

ANC - 612

I'm kind of worried about the ANC as it's taking longer than usual to go up. They won't do chemo until her ANC is 750, so hopefully she's already there. When it starts to go up it seems to go up fairly quickly so it shouldn't be a problem.