September 15, 2008 (Monday)

Well, today Stephanie took Gracie to have her first blood work done since chemotherapy. This needs to happen each Monday and Thursday. We thought that since they would have to be done so often they would prick her finger and take blood that way. However the place that our pediatrician sent us to would only take blood from her arm. This could become quite problematic with all the blood that needs to be taken. I am not a nurse or doctor but am told that a vein (or at least a specific location) is accessed it becomes less accessible in the future. So if Gracie needs blood work twice a week pretty soon it will be difficult to take blood at all. Anyway, we are trying to find a place that will poke her finger instead to get the necessary blood work but with Houston still shut down from the Hurricane it has been difficult to get access to our doctors.

Anyway, so Stephanie took Gracie to get this blood work and was thoroughly unimpressed with the approach they took. Apparently they failed to hit the vein properly on the first attempt and Gracie was pretty sore. Then they had to get another nurse to actually do it right and get the blood. We do not know the results from the tests even though the sheets we received from Houston say to make sure we record them. The lab would not release the information to us. I am really not sure what is the proper way but you would think that the lab people and doctors should know and be able to tell us what to do.

To be completely fair, I was not home most of the day today (I am really trying to get back into my regular routine at work), so all of this frustration is kind of second hand. Stephanie has been so good to take care of all that and carry the bulk of the load. I am so lucky to have found her and convinced her to stick with me! Stephanie's mom, of course, is helping out a big deal by staying with us over the last 2.5 weeks. That has been a real lifesaver.

Gracie did not like the needles (she had three pricks today because of her shots at home then the two at the lab) today but was her normal cheerful little self during the rest of the day. When I came home in the early evening she was the first to come running to the door shouting, "Daddy, you're back! You're back!" It was good, as always, to see her.

Stephanie's Note - Okay, James tells me I'm going to get a reputation here. In case you haven't guessed I'm not quite as soft hearted as he is. Actually I have to try really hard not to be very outspoken. To give myself credit I have improved drastically in this regard though, and I'll have to admit that that is largely due to James' influence in my life. With that said I need to embellish on why I was so unimpressed with the lab staff today who took Gracie's blood. I can forgive the two pokes (although how they missed such good veins is a mystery to me - and I was an RN and have accessed veins numerous times so I can be critical here). What I'm so angry with was that they dug around for so long fishing for the vein on the first poke all the while saying "Oh, it's not so bad" as she's crying and saying "I don't want it". HELLLOOO have you ever had someone fish around in your arm for a vein?! Yes it does too hurt and to tell a three year old it doesn't is just plain ridiculous. Her pain is valid, don't deny her that! The injections I have to give her hurt her too, and I'm not exactly thrilled about that but I don't tell her they don't hurt. I know she needs them so I give them anyways. But I never lie, I tell her that it'll hurt but that I'll be fast and it's all to help her get better. Maybe she doesn't understand that either, but at least I haven't lied to her. I was told that was part of being a good nurse. If you say things won't hurt when they really will the child will be afraid of everything because they'll never know if it will hurt or not because they don't believe you any more. Besides, if you fish like that for veins twice a week it won't take long until there is nothing left to fish for. This was one situation where I wish I hadn't learned to control what I say, but it's probably a good thing that I did. I'll promise you though that that woman will NEVER touch my child again. Gracie was so brave through it all. Even though she was crying she held nice and still, even when she would have been justified in kicking the lady in the nose. In case you're wondering the cancer clinic staff told me that usually they don't like to draw the biweekly blood work from the port a cath because they can usually do it with a finger poke. So they'd rather not access the port which is quite a procedure as well for just a couple of ml of blood.  And there is no way I'm letting this lab near her port anyways. 

Basically I think the lab staff are entirely ignorant about how to deal with pediatric patients, never mind pediatric oncology patients. If I have to I'll drive to the Cancer Center twice a week to avoid dealing with them again. I've already got a call into the cancer center here to see what they recommend we do for Thursday. I wouldn't be so angry if this was just something that she needed to get done once a year for a physical. Kids get over things quickly. But this is her life for the next 6 months. In that time she'll have had far more blood drawn than I've had in my entire 30 years.  I'll do what I can to make this as easy as possible for her. Thanks for letting me vent, I feel much better now even if I did solidify a reputation for myself.

Your Prayers Are Working

I just wanted to include a cute story that I heard today at church. As a friend was asking me how our stay in Houston was I told her that Gracie kept jumping from the couch to the bed and it was driving me crazy. It was quite a daring leap and I was sure we were going to add a couple of broken limbs to our list of ailments. She started to laugh and said she figured it was her 3? year old son Logan's fault. Apparently Logan associates being healthy with being able to jump really high. So when he says his prayers he prays that Gracie will be able to jump really high. Obviously his prayers are being heard because she seems to be a stellar jumper.

 We're so grateful that we have so many people praying for us and thank you for all the comments you leave us. They really do make our day a little brighter. Sometimes it's nice to know that people are thinking about you, even if they don't know you personally. So don't worry about pestering us with too many comments. I don't think that's possible. We really do enjoy them as they remind us of how many people love us and our little Gracie. Thanks for all the support.

Stephanie

September 14, 2008 (Sunday)

Church this morning was kind of lonely without Gracie but it was comforting to know that she was not exposed to any of the bugs that were probably floating around in nursery today. She got dressed in her Sunday dress this morning and had to be distracted when the rest of us left. Lucky for us Grandma is so entertaining and so wonderful! I am sure Gracie had lots of fun spending some quality time with her little brother and her grandma. Gracie seems happy and healthy but is really coming to hate the time in the morning where I sit her on my lap and hold her because that is when she knows that Stephanie is going to give her a shot. It is hard to see her cry but I know it will help her in the long run.

Today is the 3rd day since her first treatment. We hope and pray that the drugs are doing their job and killing her cancer!

September 13, 2008 (Saturday)

OK, Stephanie does not want me to post the first one but I think that it is hilarious. That is Gracie with her crazy face and it was taken right before the second picture above. I am posting that picture so you can see the opaque whitish mass in her right eye. This is not the leukocoria, like the last post, but you can see the actual tumor through her pupil. This is kind of what we saw the first time. We are much better at noticing now and know when to look. The way I got a picture was to have relatively low light and have her look away from the camera when I took the picture so that I got a better angle on the tumor. I think that since the time we first saw it and now, the floating tumor has gotten bigger and thus more visible, but for sure we are more aware so see it more.

Today was a great day for Gracie! She sure did not like her shot but never seemed nauseated or run down because of her treatments. Her blood counts and energy levels should be the lowest on days 7-10 of the 28 day cycle. That puts it next Friday through Sunday next week so we shall see. Also, something that I have forgotten to mention here, Dr. P (her ophthalmologist in Houston) classifies her right eye as class D retinoblastoma and her left as class B retinoblastoma. There are a total of 5 classes (A through E) with E being the eye is unsalvageable and must be removed and class A being that the eye can be treated without chemotherapy. In the past (and in other hospitals) class D eyes have also been removed because treatments have not been very effective in killing the cancers, however Houston has the expertise to treat and possibly save that eye.

Below I am posting the classification table from an article in the Orphanet Journal of Rare Diseases volume 1 of 2006. (Orphanet J Rare Dis. 2006; 1: 31. Published online 2006 August 25. doi: 10.1186/1750-1172-1-31.)  Here is a link to the article (the classification table I have put here is table 2):  http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1586012

The ABC classification

Group A: small tumors away from foveola and disc
• Tumors <3>
• Located at least 3 mm from the foveola and 1.5 mm from the optic disc
Group B: all remaining tumors confined to the retina
• All other tumors confined to the retina and not in group A
• Subretinal fluid (without subretinal seeding) <>
Group C: local subretinal fluid or vitreous seeding
• Subretinal fluid alone >3 mm and <>
• Vitreous or subretinal seeding <>
Group D: diffuse subretinal fluid or seeding
• Subretinal fluid > 6 mm from the tumor
• Vitreous or subretinal seeding > 3 mm from the tumor
Group E: presence of any one or more of these poor prognosis features
• More than 2/3 of the globe filled with tumor
• Tumor in the anterior segment or anterior to the vitreous
• Tumor in or on the ciliary body
• Iris neovascularisation
• Neovascular glaucoma
• Opaque media from hemorrhage
• Tumor necrosis with aseptic orbital celullitis
• Phthisis bulbi

September 12, 2008 (Friday)

Gracie at 7:25:16

Gracie at 7:26:05

Gracie at 7:25:09

Gracie at 7:29:43

Tonight we went out to eat to celebrate being done the first round of chemotherapy (courtesy of Grandma- thank you very much Grandma). It was nice to have Gracie back for her first full day at home. She was running around and playing like always. I took a few pictures at the restaurant and have posted four of them with the times taken. Picture #3 is the first time that we have caught leucokoria (a white reflex rather than red reflex in the eye) on camera. If you click on the pictures you should open a page with the pictures much bigger and it will be evident in the right eye. I posted the other pictures to show that a) she is adorable and b) usually her eyes look completely fine. The picture four seconds before shows her bright eyes and the pictures 53 seconds prior shows excellent red reflexes in both eyes. The completely white eye is only seen with flash photography. When we can see it without a flash it is more like a hazy white substance that floats across the pupil. So with Gracie only after the diagnosis of retinoblastoma and hundreds of pictures have we been able to capture this common indicator of retinoblastoma. I thought some of you would be interested to see it.

Anyway, as I mentioned Gracie has been her normal self. She loves to jump and play all day! The only indications that she was undergoing cancer treatments is the seemingly constant fight for prescription coverage, giving Gracie a shot in the morning, giving antibiotics and laxatives during the day and finally the episode of nausea and vomiting just before supper. She had been feeling fine all day and was jumping around playing with her sisters when suddenly she wanted to sit and rest. After she was was given anti-nausea medication (zofran) and was really cuddly for half an hour before returning to her bouncy self. She did not eat much supper but loved her chocolate milk and playing with me all throughout supper.

It is sad to see her sick but good to see that she is coping reasonably well. We continue to be amazed at and grateful for the support that has been shown for Gracie and us (her family) on a daily basis. It brings such comfort even when things are difficult. People have given of themselves in so many ways; from generously giving of their time and means, to offering cards or e-mails or notes of comfort, to just being there to listen and understand that life sometimes is just not easy. So thank you all for all that you do and the many ways you serve and bless us.

Stephanie's note - Zofran is the medication that we're currently fighting with insurance about. Someone noted in the last couple of days that we never seem mad or upset in these postings, perhaps that's because we have constant target for aiming our anger at AKA our insurance company. Zofran is extremely effective at controlling her nausea and without it she'd be very sick, but insurance figures it's not medically necessary. Obviously whoever made that call didn't have a three year old receiving chemotherapy. The way I'm feeling right now I don't think they even have a soul. So yes, we do get angry and upset but we have someone very concrete that we can direct all that anger at, all the idiots working for our insurance company (James says I can't name the specific company - he's far too nice). I guess this means my neighbour's trees are safe. 

A Crash Course In Chemo

Hi, You've got a guest blogger here. I just thought some of y'all might like to know a little more about how chemo actually works. I'll give you the same crash course I got. Chemotherapy drugs work by inhibiting cell division, each particular drug works in a different way and that's why you use different drugs - to try to hit it from every angle. In particular they target cells that divide rapidly ie. CANCER! However there are other cells in the human body that divide rapidly and so they are also killed by the drugs. Mostly these are hair, mucous lining, and blood so I'll list what the chemo does to these cells.

1. Hair - This one is kind of obvious. You lose your hair, explaining why people receiving chemo are bald. We were told that we probably wouldn't see much significant hair loss until after Gracie's second round.

2. Mucous linings - In particular the lining of the GI system is effected all the way from the mouth to the very end. She can develop sores anywhere in her mucousal lining, this sometimes could make it difficult for her to eat unless her food is soft. This is why Gracie needs special mouthwash four times a day to keep her mouth clean so that it is less likely to develop sores (also a potential port for infections).

3. The blood - First I'll do an over view of the components of blood. You've got your red cells, white cells and platelets. All of these components are effected by the chemo and their counts drop as a result. The counts are usually at their lowest 7-10 days after chemo therapy is administered. 

The red cells carry the oxygen which is needed for energy. When her red cells drop her energy levels will drop too. Plus she'll look pale.

White cells are required to fight off disease. She will be immunocompromised throughout her treatments. As such she needs to take antibiotics three days a week for at least a year. A germ that would do nothing to a healthy child could land her in the hospital for IV antibiotics or worse. In the words of the oncologist she could go from being just fine to the ICU in half an hour. ANY signs of illness needed to be taken very seriously and any one who is ill need to be kept away from her. This is why she'll be taking a break from church for the next six months. She's still allowed to play with other kids though, we just need to make sure they're all in good health. And wash, wash, wash your hands!!!!

Platelets are required for your body to heal after cuts and scratches. They kind of collect at the site and form natures bandage. When her platelets are low she'll have a more difficult time healing, and open skin is a gateway for infection making it a double whammy. 

Her counts for all of these blood components will definitely be down during chemo, if they get dangerously low then she'll receive blood or blood product transfusions. This is why she gets blood tests twice a week to determine what her counts are. In order to help her counts build themselves up again she'll receive injections (subcutaneous for the medical type) of G-CSF once a day for between 7-14 days after every round of chemotherapy.  This shot helps her counts recover quicker than they would on their own.

In addition to these effects there are other common side effects for each of the drugs which she's receiving. Not the least of which is nausea, it's kind of legendary with chemotherapy. Fortunately they have a very effective drug to combat this now - if only we didn't have to fight with insurance to get it. The nausea can occur at any time during the months she's being treated. If the drugs don't control it then she'll need to be hospitalized to receive IV fluids. 

All of these effects listed above have a cumulative way about them. Meaning we can expect them to get worse with every round of chemotherapy. So we might only notice a slight decrease in energy this round, but after the 6th round she may just sleep for 2 weeks. 

The good thing about her being so young is that she won't have to deal with the depression that most older people with cancer face. She's young and oblivious to it all. Even with all that they were doing in the hospital she was so cheerful. They were checking her blood pressure every 15 minutes during the chemo and she'd just say in her perky little voice "Are you hugging my arm again?!" Okay when she was asleep she wasn't as impressed with it, but she's usually very happy. I think adults could learn a lot from visiting a pediatric oncology unit. Some of these little kids are so very very sick. I could hear one of them heaving from all the way down the hallway. My heart went out to him/her and their family. And yet they throw up and then move on and smile even when they still feel yucky. It's so amazing. Obviously happiness is a choice, it's not something you're dealt. 

It's so good to be home. I was headed out of Houston as the National Guard was coming in. Rows and rows of military vehicles were driving in and helicopters were circling about. I hope the city weathers the hurricane well. We'll be remembering all of our new friends we made in Houston over the last couple days and pray that their families and homes stay safe. Also that the medical center stays running well so no one's care is delayed. Thanks for your support,

Stephanie

September 11, 2008 (Thursday)

Well, our happy bouncing girls was back in action. She arrived home just after noon and before long her and her sister had torn up the living room. She was so excited to see everyone and make sure everyone heard her say, "I'm back!" So she was and we were glad to have her. Then we proceeded to look at the schedule for the coming month. Anti-nausea drugs as needed, antibiotics three days a week, shots to increase blood counts for 7 to 14 consecutive days, blood tests at least twice a week, special mouthwash 4 times a day, etc. Then we also need to try to keep her from hitting the area of her chest where the port-a-cath is, this is difficult given her tendency to jump off of and onto anything she can find. But she is sure a delight and we are excited to have her back in our home.

Everything seemed to go fine in Houston and Gracie will have round 2, the second weekend (Thurs-Sat) in October. Then this afternoon, we headed out to pick up prescriptions for all the medications that our oncologist prescribed. The pharmacy did not have the drugs on hand so we said that we could wait until tomorrow. We went home and an hour later got a message from the pharmacist saying that two of the drugs prescribed were not covered by our healthcare plan and would be expensive. Some compromises had been made and we could get a portion of one of the drugs at a reduced cost but the other drug was not covered. Why our plan does not cover anti-nausea or pain-relieving ointment for pediatric cancer patients is beyond me but we made several phone calls to our case manager at our insurance company. She gave us some suggestions to finding the drug at a lower cost and ideas on trying to get the drug approved and/or covered some other way. After several attempts to do so there was little progress made. Apparently this is a battle with the insurance company and pharmaceutical benefits company that will go one for more than a couple hours. I do not know if there are similar drugs covered or not that our oncologist could prescribe. The hurricane in Houston has cut of some of the contact with the medical staff there for now. We are confident that it will all work out but it is still just one more thing to think about when there are important things, like Gracie, to worry about.

Thank you all for your prayers and love. We have especially appreciated them over the past week and Gracie seems to have started this process on a really positive note!

Update from day 2 of treatment

Everything went well with the treatments early this morning. No adverse reactions were noted and Gracie is back to her excited little self! Gracie and her mom left Houston at 9:30AM and we cannot wait to have them home!

September 10, 2008 (Wednesday)

For Gracie and her mom, today was a lot of waiting around in the cancer center, going for walks, talking with some nurses and doctors, watching TV and playing with toys. We found out that the future treatments will start on Thursdays with an EUA and injections of Carboplatin into the area around the eye. Then Fridays and Saturdays will include IV injection of carboplatin, vincristine and etoposide for stretches of about 2 to 3 hours (the drugs are administered in succession). After the Saturday treatment Gracie can come home. In some ways that is a really nice schedule and makes the work week a little less hectic. This first treatment did not include the EUA so the treatments that are going on as I type are the final ones and Gracie will be coming home tomorrow morning! I am excited that they will be beating the hurricane home and even more excited that Gracie and her mom will be home again! I have missed them so much, even though I have talked to them frequently.

Gracie has been her normal perky self. Her mom told me she had to work to keep her from jumping from the couch to the bed in the hospital room. Gracie has loved playing with the cars on the unit (see the picture above) and talking with anyone that will listen.

On a bit of a scary note the nurses told Gracie's mom that they are concerned that Gracie may have had a reaction to one of the drugs last night. As they reviewed her charts they noted some serious coughing near the end of the treatments (this is a potential indication of an anaphylactic reaction). So as a precaution they have the medical staff alerted on the unit and they are going to monitor her very closely. We pray for her continued safety during the treatments and that our cheerful little girl will make it through the night without further complications.

Answers to questions received

I am just going to briefly answer four questions that were posted in the last couple of days. I will do my best and my wife may add/change answers if I am wrong:

Can you show a picture of the opaqueness in the eye?

No we actually cannot because we do not have one. I spent some time today going through hundreds and hundreds of Gracie's pictures (thanks to the miracles of digital photography) over the past 6 months. I could not find one where there opaque mass is visible. This may be because the visceral seeds were new when my wife first saw them, or it may simply be the fact that they are really hard to see. Even now unless her eyes are dilated and the light hits them just right it is difficult to see the any evidence of the cancer. Most of the pictures just show the big beautiful eyes that we know and love with Gracie. There were two pictures in the last month and a half that looked a bit like the opaqueness that we have seen but I think it was more the reflection from the area around the pupil and not from the cancerous mass in the eye.

Is it preferable for Gracie to be asleep during the treatment?
Well, yesterday (rather early this morning) it was. However, the biggest reason they were done then is that the consent forms were misplaced and then waiting on delays in the pharmacy. Ideally I think they would have administered the medication within a couple hours of Gracie's admittance to the unit (which would have been late afternoon yesterday). She then would have played games or watched movies through the treatments. Sleeping through the treatments is probably pretty nice though.

Is it typical to feel nauseous or unwell during administration or does that tend to come later?
I think the short answer to this is that they expect Gracie to feel nauseous both during and after the therapy and so were just trying to minimize that with the drugs before the chemotherapy.

Do the injections of carboplatin happen under a general anesthetic at some point?
Yes, these injections will likely occur on the first morning of the next round(s) of chemotherapy. An EUA is scheduled each cycle to see how effective the chemotherapy has been over the course of the 28 days and while she is still under anesthesia the carboplatin will be injected around the eye.