Today's Counts

HGB 10.4
Platelets 55
ANC 1066

Because her ANC counts are going up we can stop the daily shots. Yeah for Gracie!

Some lessons learned

I look back over the past month and realize that so much has changed in my life. It is amazing to think that one month ago today Stephanie and I were sitting down seriously talking about the possibility that Gracie may need to lose her eye. Only one week prior to that we were basically oblivious to the major health challenges that awaited our little girl. Those days seem like a lifetime away.
Since then I have learned much about a disease that I never knew existed. A disease that seems to be indifferent to a child's upbringing, nationality, religion, gender or ethnicity. A disease that brings, at a minimum, much sadness and heartache for families and friends. Then, if undiagnosed, untreated or allowed to spread, it can bring death. Gratefully, I have also learned that, through the miracles of modern medicine, retinoblastoma is treatable. Survival rates are extremely high in the industrialized nations. Not only do children with retinoblastoma survive but they have the opportunity to thrive in our society and make a real difference in the world. I am so very grateful for that knowledge.
More importantly I have learned a lot about people in the last month. I have come to more fully appreciate family. I cannot say enough about Stephanie, my wife. She has made certain that everyone was taken care of and felt loved. I am glad she chose me those 8 years ago when I asked her to marry me.
I have been blessed with a wonderful loving family (both from my birth family and the family I married into). Though I have lived far away ("far, far away- and over the mountains," as Gracie likes to say), I have felt close and in some cases been close. Knowing that I have never been alone, even when times were toughest, has kept me from getting too down.
Our church family has reached out in so many ways. I cannot count the number of ways that people have reached out in love and service. I do not even try to list them for I know that I will miss something.
I am blessed with awesome neighbors. People from my community have become a wonderful source of strength each day. Each has their struggles and lives but all have stopped to lift and help me and my family. We are buoyed up by their kindness and charity.
I also have found true kindness and love from friends. Expressions of support and concern have been overwhelming. I have been blessed to work with people that not only said they care, but show it. I have received messages from old co-workers and school associates telling me of their love and support. People from all types of religions have informed us of their personal and congregational prayers for our Gracie and her family. I know that family friends are faithfully praying and working to help Gracie beat her cancer as soon as possible. I know that the wonderful medical team, which helped get Gracie's CT scan so quickly, has been given special permission from their employer to follow this blog from work. Their support along with the love and support of so, so many others is evident in Gracie's life. My family and I truly do feel of the support and love. I have found that, just like retinoblastoma, true friends are found across nationalities, religions, genders and ethnicities.

I am confident that all will be well for our Gracie. I have been richly blessed to have Gracie in my family. She brightens each and every one of my days!

The blog is evolving

To all of you that check daily for the new updates, I must apologize for my tardiness in yesterday's post (I just posted it tonight at 8PM). I know some of you were waiting for it, however, I just got busy doing other things. The fact is that this past week has included some days that felt normal again. Tuesday, for example, felt a lot like Tuesday and not so much like "The day before Gracie starts chemo" or "The day Gracie's siblings get their eyes checked to rule out retinoblastoma." Over the past month, titling the daily postings with the date and day of the week helped me remember where I was in relation to everyone else around me.
Looking forward to the next couple weeks, it seems that we have some fairly regular days coming. Life seems to keep marching on and in some ways I feel like I have been standing still and watching the procession pass by. Now it seems that we are ready to get back in line and push forward. Sometimes I am still uncomfortable with the notion that I am becoming comfortable with Gracie having cancer but I also think that establishing normalcy in our family life is important for everyone- including Gracie.
Having said that, I am not necessarily planning on blogging about Gracie's daily routine, as I have in the past. While I will keep blogging and mention the things that are going on in regards to her battle with cancer the posts will likely be comprised less of Gracie's travel log. If Gracie's routine for the day is no different than usual, I may not even post that day. Of course, this is subject to change at any time.

September 20, 2008 (Saturday)

So today, Gracie and I left in the morning to go to the Children's Hospital. Dr. L had told us to go to the hospital for more antibiotics and blood work, just to be sure that Grace did not still have an infection. Gracie had slept much of yesterday afternoon/evening and been up and down all night, however in the morning she was quite perky. We got to the hospital at 9:30ish and went straight to the oncology unit (as per our instructions). Gracie literally bounced onto the unit. She was trying to jump from one colored tile to another down the hallway. It was a very fun game for both of us. She had been singing earlier (some version of "We are a Happy Family" mixed with "Old MacDonald"), but had now settled down a bit and was simply playing her little game. She told the oncologist (Dr. S) and the nurse that it was "Nice to see them." They said it was nice to see her too but we would have to go and check-in near the front doors. The nurse put some LMX cream on her port-a-cath (to numb the area) as they were planning on accessing the port for blood work and injections. Gracie did not like the cream at all but it did not take long.
Once at the check-in desk we found that the hospital had not entered Gracie in their records, despite her having been there several times. So I had to give all of our information to the kind man at the desk. This took 30 minutes or so and all the while this man had the sniffles and coughed occasionally. He was kind enough to wash his hands and leave quickly to cough but it felt strange to have been sent to him when we were trying to prevent an immuno-compromised Gracie from getting sick. Anyway after that little event we went back up to the oncology unit and directly into a treatment room. Gracie asked Dr. S if she would like to check her heart. Dr. S said that she did. Gracie chatted with Dr. S about checking her eyes and her ears and her mouth. By the time she was done Gracie and practically directed to whole exam. Dr. S chatted with me about what had happened and then said that she saw no point in accessing the port today. We would have blood work on Monday and, since the fever had not reoccurred, it was unlikely that there was an infection. So Gracie got the Dora sticker that she had really wanted and we merrily waved Good-bye to everyone before leaving. It seemed like a lot of work to have nothing done but we were happy Gracie was feeling so well.
The rest of the day was a pretty normal Saturday. Gracie felt fine and we did things like get groceries, pick up mail, try to catch up on some work things that had been undone over the last few days, etc.
Hopefully we do not make a habit of needing to go to the cancer unit between treatments but we are glad to not have to make the three hour trip to Houston. Gracie is taking all of the hospital visits and injections very well. We are so pleased that she is so strong and happy. Thank you all for your love and prayers. She has and does greatly benefit from your continued support and concern.

September 19, 2008 (Friday)

Gracie in the cancer clinic today.

What excitement today! I was feeling really good today after a night's rest, had dropped my oldest child at school and was nearly at work- when I got a phone call from home saying that Gracie's temperature was 102F. We were told by our doctor in Houston that if Gracie ever ran a fever of more than 101F that she should go directly to the emergency room. So I turned the car around and headed back home. We dropped kids off at a friend's home and headed to the emergency with Gracie. I felt pretty silly doing this since we would have never considered taking a child with a small fever to the emergency before and Gracie was really doing quite well with it. In fact she was mad that she had to come and could not stay at our friend's home. By the time we got to the hospital (30 minutes later), Gracie no longer had a fever. So we stayed in the parking lot and called the nurse practitioner and Dr. M in Houston. They both said that we still needed to have her looked at and Dr. M even said that we would likely need to be admitted for 2 days. So then we called Dr. L, our oncologist here (who happens to work right next to the emergency room). Her office said just to come over there and they would run the tests and do what was needed. So we went into the cancer clinic. Now they have told us that whenever Gracie has a fever that we should never go to emergency here but rather take her directly to the cancer clinic (where we went today) or to the cancer unit at the hospital (if it is not regular office hours). In Houston the emergency room has special procedures for cancer patients but at the hospital here we are just suppose to skip the emergency room all together.

Gracie did not want to wear the mask they gave her but was really excited to see the child life specialist and her doll Sammie again. Gracie helped Sammie take medicine and get all the pokes to make him feel better. Gracie had blood work done and got checked out by a nurse on the unit. She was fine throughout the visit and loved watching Dora the Explorer. She did not like having her port accessed but was really good once it had been. I do not blame her one bit for that, I was nervous with them sticking a needle into her chest. She is a brave little girl and unfortunately knows how to work around an IV pole quite well.

They gave Gracie some antibiotics just to be safe and lots of fluids so that she was not dehydrated. She was very kind to all the nurses and doctors. Some football players from the local college football team even came in to say hi to all of the patients. Gracie was not as impressed as many of the kids there and mostly just ignored them to watch Dora the Explorer but it was kind of them to stop in.

So to summarize we left our home for the hospital before 9AM and arrived home just after 3PM after having been in the cancer clinic most of that time. They also want to do more blood work tomorrow and so we need to go to the cancer unit in the hospital tomorrow for more. 

One of the big reasons that they were concerned was that her blood counts were at 900 yesterday. So today when they did the preliminary tests were between 1250 and 1300. They were not really sure why the discrepancy but think it was probably elevated today because Gracie was trying to fight an infection. It is really good that Gracie was able to try to fight off the infection in her condition. So after the blood work they told us that we probably would not need to admit Gracie to the hospital for the night. We were happy about that but really want to make sure we do whatever Gracie needs.

So hopefully this is not what will happen one week after each of Gracie's chemotherapy treatments but I know that things could be a lot worse. She came home from the hospital and fell asleep, only to wake up at 10:00PM. Now she is having a hard time sleeping again as she would rather talk to me or play with the dog. Even when it is time for Gracie's beautiful, bright eyes to shut, I cannot help but think how blessed we are to have her in our family. She just makes me so happy with her big smile and her constant energy.

September 18, 2008 (Thursday)

I'm posting for James again. This time it's because James is sick too. He woke up and took my mom to the airport at 5am then he took our oldest daughter to school and when he came back he said he didn't feel so great. He's been nauseated all day, and our second oldest daughter decided to join him (after she felt just fine yesterday). So today we've had two sickies which became more of a worry to me after the cancer clinic in Houston called to tell me that Gracie's ANC (absolute neutrophil count - necessary for immunity) was lower than they'd like (900). Great, those numbers dropped quicker than expected. So sure enough she started saying that her tummy hurt tonight just before supper time. She slept on the couch for an hour and when I finally decided to carry her upstairs to her room she decided it was time to throw up all over me. Thank heavens I was able to get her to the bathroom before that happened.  It's much easier to deal with on tile than on carpet. Especially since the carpet has just been cleaned. After I got her all cleaned up I called the oncologist on call in Houston to ask what I was to do with her. She doesn't have a fever yet so we're just to keep her at home and try to keep her hydrated and comfortable. If her temperature reaches 100.4 we're to get her into the nearest emergency. So my job is to check her temperature frequently through the night and until she's feeling better. Poor little thing. But the good news of the day is that we found out that insurance has now approved her zofran so we're able to at least give her something for her nausea tonight! 

Todays Labs (MUCH better experience today)

HgB - 10.3

Platelets - 126

ANC - 900 

Stephanie

Normal Test Numbers

For reference here are what normal blood counts should be. When you're going through chemo the numbers are expected to be lower than normal so I'll include the numbers where they'll intervene too. 

HGB 10.5 - 14.0 (They'll transfuse if less than 8.0)

ANC 1500 - 8000 (They like the numbers to stay above 1000 in chemo patients if they get less      than 500 there could be serious problems.)

Platelets 150 - 450 (They'll transfuse if less than 20) 

September 17, 2008 (Wednesday)

Gracie still hates her shots but seems to be taking even that in stride. All seemed to go well today. Gracie's sister felt much better and we have received confirmation that her blood can be drawn at the cancer clinic here. We will see how that goes tomorrow.

September 16, 2008 (Tuesday)

I guess Stephanie beat me to the punch this morning. Gracie had a wonderful day. She loved playing with her little brother and it was hard to keep her away from her sick sister. Hopefully all will be fine today and Gracie will not catch whatever her sister has. Stephanie, as always, has been wonderful in arranging everything that Gracie needs. While there is always excitement in our home, it seemed relatively calm in regards to Gracie's cancer. We hope that continues and those drugs keep working to get rid of the cancer so that both of her eyes can be saved!
As always, we appreciate your support and prayers.

Followup to my rant

I've decided to do a followup post now that I've become more rational again. I've got in touch with the cancer center here and we're working on getting things arranged to do all of Gracie's blood work there from now on. I'm glad I didn't tell off the lab tech who drew her blood on Monday because I simply didn't need to. As I said earlier, I was an RN. I know anyone can make a mistake. Even today the shot I gave Gracie wobbled a little in my hand and didn't go in as nicely as I'd have liked (she kind of moved when I put it in and bumped my hand, and subcutaneous injections are not hard to give) but I still consider myself a good nurse. Or a good retired nurse at least. There isn't anyone in their job/life that doesn't make mistakes. And sometimes they're stupid mistakes. I'm still not happy that she dismissed Gracie's tears as "nothing" but as a parent there is a line between being your child's advocate and just being difficult. It's not even that fine of a line. But if I get the habit of just being a difficult shrew I'll soon become that patient who no one wants to care for, whether they're good or not. You do catch more flies with honey after all. I'm being Gracie's advocate by simply not taking her back there again. We now know that they're not really experienced with children, never mind children on chemotherapy. So we've learned and we'll do differently next time. If I need to in the future I'll say something, but this time I didn't need to.

Gracie is doing very well today. Her older sister is sick though, so we're trying to keep them separate. I have people lined up who are willing to take my children when they're sick to keep them away from Gracie, but I'm hoping her blood counts aren't too low after this first round so that she isn't too compromised, that way a quarantine won't be necessary. It's hard for me to think of sending my other children out to stay with other people just when they need me the most. Sick kids want their mom. But there are no signs of illness in Gracie right now, so we're hoping it stays that way.

Stephanie