Quick update from Day #1 of chemo

Gracie started the actual chemotherapy after midnight last night and ended the treatments at approximately 2:30AM. Apparently she slept through most of it and woke up pale but chipper. I have attached a picture of her from this morning.

September 9, 2008 (Tuesday)

Today had to be one of the hardest days that I have had to concentrate on anything. Gracie and her mom left for Houston yesterday. I had a really difficult time sleeping knowing that tomorrow might be the beginning of chemotherapy for Gracie. That is really what I wanted but it was still very difficult to think about. I tried to have a somewhat normal routine but basically waited anxiously by the phone and e-mail to receive any word. I knew that Gracie needed to check in at 7:15AM and spoke with her mom at 5:45AM as they were getting up and ready to leave the Ronald McDonald House. Apparently all went well with the kidney tests in the morning. Basically they injected some tracer chemical into Gracie and then took tests after 1 hour, 2 hours and 4 hours to make sure the kidneys were doing their job. So Gracie and her mom ate during one break, checked in with the cancer unit to make sure chemotherapy was a go this evening on another break and took the long 2 hour break to go clear out and clean up their room at the Ronald McDonald House. Gracie is her regular chipper self telling all the doctors and nurses that it is "nice to meet ya!"

Of course the tests were performed in the basement and with no cellular reception so I sat beside my phone but did not get any information until after noon when the tests were all done and they were on their way to be admitted to the cancer unit. Grace and her mom spoke with Dr. M, our oncologist and found out lots of good information. In addition to the drugs I already spoke about (Vincristine and Etoposide in the August 29, 2008 post), they will also be using Carboplatin. Basically, from what I understand, this drug messes with the cancer cells ability to reproduce by linking DNA strands and not allowing them to line up properly during cell division. The cells then cannot divide and the cancer stops growing and starts dying (YEAH!). This drug is not as commonly used for retinoblastoma but recent studies have shown that it may be effective in treating it. The doctors would like Gracie to be involved in a clinical study where Carboplatin is not only given intravenously but injected into the space around her right eye. This injection will have high concentrations of the drug and should therefore allow more of the drug to get into the vitreous fluid in the eye and battle the vitreous seeding. If you remember, the seeding is the hard to kill part. Dr. M had spoken of this treatment before but we did not realize that it was still in clinical trials and Gracie could be one of the first groups to use it this way. The injections will not occur until the second and/or third rounds of chemotherapy. I am excited about the prospect of saving her eye but it is difficult sometimes to think of having a new medical trial started on your baby girl. I want only the best for her and I know we are having some of the best medical professionals looking after her. That gives me a great deal of confidence.

Once in the cancer center, Gracie was given fluids intravenously (see picture below with tube into her chest). This was in preparation for the chemotherapy drugs. However some mix ups have occurred in that consent forms were temporarily misplaced. As of 10:30PM Gracie was being given some anti-nausea medication in preparation for the chemotherapy but had not started the chemotherapy. Once started it will go for 2 straight hours. The drugs contain some toxic chemicals and will be in her system for up to 30 hours following the administration of the drugs. So in caring for Gracie during and following the treatments we need to take special precautions to limit contact with any of the toxic materials.

My wife is in good spirits when I spoke with her and Gracie loves that she has sole discretion over the movies that she watches and the games she gets to play. So for now, life is wonderful for her. 

It is hard to be away from Gracie at this time. I am glad that my wife can be with her and care for her. I miss them dearly but find peace in knowing that we are fighting back. I am confident that Gracie will win this fight. There are so many who are giving so much of their love and support to her, how could she not win?

September 8, 2008 (Monday)

Finally, this week is here! The last week has seemed like the longest week of my life. Just waiting for Gracie to get on with chemotherapy. There were some times when life felt normal but seeing doctors and occasionally seeing the white tumor float in front of Gracie's iris reminded me that we were still waiting for chemotherapy to start this week so that we could get rid of it.

Today was so great! We really did not think that we would find anything with the EUAs today but I was still so nervous. We have had enough bad news in the surgical unit that it was hard to wait for news of the EUAs today. It was not really that long but Dr. O came back with all good news. In fact Dr. O had thought my son would have some muscle delays in the eye but she could not find any evidence of that!

Gracie received a spot at the Ronald McDonald House in Houston! So that helps to reduce the costs of staying away from home. They had wanted Grace and her mom at the House at 6PM however the EUAs took longer than expected. They could not get there until 8PM. I phoned ahead to make sure they could still get in. The manager was sympathetic and assured me that they would get in and a room would be ready. Grace and her mom arrived just before 8PM. There were little problems checking in. It is a great opportunity for us to have such a nice facility close to the hospital for Gracie to stay at. Tomorrow morning at 7:15AM Gracie starts testing on her kidneys. Then hopefully chemotherapy can start in the afternoon.

It is kind of tough to see all the other children at the Ronald McDonald House who are going through treatments. It hits home when you know that pretty soon Gracie will be one of those kids. Modern medicine is truly miraculous but that does not make it any easier to see kids suffer. We continue to hope and pray that Gracie's cancer can be controlled and destroyed quickly. We appreciate the love and support that we feel on a daily basis from people near and far. Thank you all so much!

September 7, 2008 (Sunday)

Each week we write a letter that we send out to our family. In order to avoid repetition and as our hearts are so full of gratitude today after such a wonderful fast Sunday we decided to include an except from the letter which my wife wrote last Sunday. We are so thankful for such a wonderful support system with our friends and family. Thank you all for what you have done for us. Thank you for the anonymous card that we received today. We figure you know who you are if you wrote it and we very much appreciate it.  I realize that not all of the readers of our blog have the same religious beliefs as our family and some may see the following list as something other than "blessings". But we also know that there are many of you of all different faiths who are praying for us and we are truly grateful for that. We hope that you will join with us and choose to acknowledge that our blessings are truly evidence of God's love and works, not just mere coincidences. 

"This won't go down in history as our families best summer. First we discovered that our son had a neuromuscular disorder and then we discovered that Gracie had cancer. Perhaps James and I are the most genetically incompatible couple in the whole world. But I just want to let you all know how absolutely wonderful our life is. The hand of God is so clearly evident each day of our life. We feel the peace that only the gospel brings. Even when we're distraught, we feel that peace. How wonderful the gift of the Holy Ghost is! I just wanted to point out some of the miracles and blessings we've seen in the last month.

1. James told me in June that we needed to go to Canada this summer. I told him several times over the next couple of months that I didn't want to go as I was too busy with our son and his appointments. I put him off time and time again. Finally he simply said one night that we needed to go and he wouldn't feel good about putting things off any longer. Had we not been in Canada we wouldn't have got in with an ophthalmologist near as quickly as we did as there is a several month waiting list to see one. If we didn't know how urgent it was we would have been quite content to wait for that appointment. It doesn't hurt, she can see just fine...why would we think it would be so serious. The worst my mind could conjure up was a cataract. How wonderful that James' is so receptive to the promptings of the spirit so that he can bless and care for our family.

2. Dr. L was so kind as to open his clinic 1/2 hour early to take a look at Gracie. And then he spent time researching and consulting with pediatric ophthamologists to discover that this was possibly something very urgent. How grateful we are that James' parents just happen to be good friends with one of the only ophthalmologists in the region.

3. I have a background in nursing and feel very confident in navigating through the health care system.  I'm learning about American health care pretty quickly too, and am figuring out how to effectively get what I want/need from insurance. My somewhat assertive personality is coming in pretty handy in this case also as I'm finding it necessary to do a considerable of amount of work coordinating all of these doctors and hospital visits. We already have a good case manager because of our son and they just opened a new case for Gracie with the same manager.

4. Because of our son's eye problems in his first few months we already knew Dr. O here. We didn't have to worry about going home and getting a referral from our pediatrician. I called Dr. O directly and her scheduler was able to set up an appointment on our first day back from vacation. It's almost unheard of to schedule an MRI and EUA back to back without at least 3 weeks notice. We were able to get it done in less than a week.  That way she didn't have to go under anesthesia one more time and we had a confirmed diagnoses on our first working day back from vacation. 

5. I was so angry at that one tumor that has pulled off the retina as if we have to enucleate (surgically remove) that eye it will be most likely because of that one tumor and the visceral seeding around it. However if it didn't pull off I would have never noticed anything and that tumor that is dangerously close to the optic nerve would have grown right into it. Once it hits the optic nerve it has a highway to the entire nervous system. Retinoblastoma has a survival rate of greater than 90% if it's contained in the eye, if it leaves the eye it drops to 7%.  One of the key ways to diagnose retinoblastoma is the absence of the red reflex (red eye that you see in pictures). To this day Gracie still has her red reflex. When our pediatrician was looking in her eyes while she was in getting her throat checked (she came down with strep throat on Thursday) he still can't see the tumors on her retina. The only thing visible, unless you're a highly trained specialist - ie. ophthalmologist, is that floating tumor. There is absolutely no way I could have detected it any earlier without having an EUA done, and that wouldn't have been done in less there was a reason for it. So to summarize - that floating tumor and the seeding may be the cause of her losing her right eye, but it is absolutely the only thing that has saved her life.

6. I noticed that eye was opaque and it concerned me, and then mentioned it to the right people AKA James' dad.

7. James' dad didn't just think I was a hypochondriac but went on and talked to the right person about it. (Okay maybe he thought I was a little paranoid but he still took the right actions).

8. We just happened to move a block away from the best friends in the whole world who were willing and able to take our kids at 0530 without any advanced notice in the midst of a move. In Juli's words she's glad that Josh was social for once and introduced himself to James and offered to give him a ride to stake priesthood meeting and that she was brave for once and decided to stop by the house to introduce herself and her girls while that priesthood meeting was going on. They took care of the girls while we were in the hospital when our son was born, when he was at all his appointments in June and now through this. We have been truly blessed to know them and will miss them being so close.

9. We both have parents who are willing to come down whenever we need them. We definitely have the best two families in the world. I love my own family so much and there is no way on earth that I could possibly have better in laws. I enjoy their company and have so much fun with them. I can't ever remember feeling uncomfortable or out of place with them (since marriage) and know that they love me and my family very, very much.

10. Our ward has showered us with love and support. Grace is kind of the teacher's pet in nursery (with all the teachers) as she is such a sweet little happy thing. We can't even begin to mention how much our ward has done for us. 

11. With all of those tumors in Gracie's right eye not a one affects her fovea so she can still see out of both eyes.

12. I woke up at 0430 Wednesday (August 27) morning and felt it was urgent that we seek a second opinion before we enucleate that eye when we'd already decided to skip that appointment.

13. We are the parents of 4 wonderful children

14. We have seen great improvement in our son's physical abilities over the last month. He crawled up 2 stairs and pulled himself up to standing! (This is a big deal for us).

15. I am married to James - genetically compatible or not we've got the best love story in the history of the earth. Plus we're still best friends - in good times or bad. 

16. Both of the universities James was seriously considering attending are within 4 hours of major retinoblastoma centers (Houston and NYC) giving us relatively easy access to some of the best medical care available in the whole world.

17. Gracie was in a lot of distress when she was born and it was a miracle that she survived her last couple of weeks in utero as well as her delivery. She's proved to be our miracle baby once and we know she can do it again. 

I could go on and on as our blessings are so bounteous. Some of these blessings obviously haven't just occurred over the last month, but it's clearly evident that the Lord prepares us for our challenges long before they ever come. If this isn't evidence that God has a plan I don't know what is.

We have some very specific things that we're praying for:

1. That the cancer doesn't spread while we're waiting for chemo to start on Sept 10.
2. That the chemo and laser treatments will be effective and that we'll be able to save both of her eyes

3. Far more children with retinoblastoma die of secondary cancers than they do of retinoblastoma. Because her cancer is in both eyes she is highly prone to developing other future cancers. We pray that this cancer goes away and NEVER EVER comes back!
4. That Houston is not effected by any hurricanes or other problems that may cripple the city and delay Gracie's treatments.

 
We have many other things we're praying for each and every day. But these are the ones relating directly to Gracie and her cancer at this time."

James and Stephanie

September 6, 2008 (Saturday)

So I think we have of the stuff we need to send Gracie and her mom to the hospital next week. We ran a few errands today and picked up several bottles of disinfectant for hands to place around the home. We do not want Grace to get sick because someone carried around bacteria on their hands. We also picked up a binder/journal to collect and record a medical history for Gracie. We were at the doctor's office this last week and noticed that the family of a small boy had a specific binder to keep all of his medical information to be sure that the parents knew exactly what was going on and so that they could show it to doctors. Since Gracie's list of doctors and procedures has gotten fairy long in the past two weeks we decided that a medical binder would be an excellent idea. We also picked up another cell phone so that I can communicate with my wife while they are away. We also have a lot of scheduling to do and want to be sure that we do not double book an important appointment so invested in a smartphone. Hopefully now any appointments made at home or on the road will be updated on all our calendars and we can avoid future conflicts.
Gracie is still pain free and a really happy little girl. She and I were playing outside yesterday and she was climbing and jumping all over. I was trying to ask her to stop jumping but she really did not understand why. I would say, "Gracie, I wish you wouldn't jump from so high." To which she would look me in the eye and say, "But please daddy? Pleeeeese." So I would try to ensure that I assisted her jumps to prevent too much jarring of the port-a-cath site. It is often hard to think of next week because she is just our wonderful little 2 year old. She gets mad if she cannot be the first to open doors or has to have a bath when she does not want to. She also forgives so easily and is so loving and loyal to her siblings. Pretty typical stuff for a 2 year old. She was playing with some other kids yesterday and it was hard for me to hear the other parents talk of their 2 year old who was playing there and think of how different the next week held in store for the two children. There was no anger, just sadness that such an innocent little girl, who seems so happy and healthy, was about to be given powerful drugs to stop a cancer she does not even realize she has. However, we know that this next week and future chemotherapy treatments will go a long way to saving our Gracie. We are glad for the miracles of modern medicine and are confident that Gracie is getting some of the best care available.

Now, on a completely different note. There was a question or comment about genetic testing for our family. Genetic testing is a critical step in understanding retinoblastoma (particularly bilateral retinoblastoma). This testing will be performed and will hopefully help us to understand if my wife or I are carriers of the disease or not and also if any of our other children have increased chances of having developing retinoblastoma. I am not sure when this testing will be performed but the hospital in Houston (where Gracie is to receive treatments) assures us that this is part of the regular testing for families such as ours. We are happy about that and want to proceed with the testing however we do not know when. This will help to determine the frequency and detail required in future eye examinations for our children, so the sooner the better as far as we are concerned. However, the EUAs scheduled for our children on Monday is still recommended (and will proceed) in order to get an immediate look at their retinas and mitigate any potential problems now before they have time to cause any permanent damage. Now that is at least my understanding of the situation at present for genetic testing and the EUAs on Monday.

Lastly, as a point of clarification on the purpose of the blog. I am pleased that so many people are finding the blog informative and helpful, though the readership has grown bigger then I ever really expected. Getting information to those who want to know more about Gracie is one of the purposes of the blog. Another purpose in writing these things is to help others with similar life situations to better understand the feelings, pressures and challenges that come on a daily basis. As such I have tried to honestly express frustrations, blessings, disappointments, worries, etc that occur in this process. These feelings are unique to me and informed by my specific beliefs and life experiences. I do not apologize for that or pretend that everyone will have the same feelings, however when the initial diagnosis of retinoblastoma occurred, I found some measure of comfort when I heard success stories from others with retinoblastoma. Thus I would feel somewhat ungrateful if I did not honestly share our story with at least one person who could benefit. So please do not misunderstand the blog as any sort of solicitation for sympathy, money or other things. I speak of sadness, worry and financial frustrations only because, during Gracie's battle with cancer, these things do exist and they are part of our life. I like to think of myself as an optimist and would rather not discuss the negative emotions that occur however, in keeping with the purpose of the blog, I have tried and will continue to honestly share the joys and the struggles I experience throughout Gracie's battle.

September 5, 2008 (Friday)

Well, after an early morning at the hospital (we were there at 6:15AM), Gracie had the port-a-cath inserted. They gave us pain medication for her as they said that she would be in pain. However, typical Gracie seemed as perky as ever throughout the day and tried to be just as active as always. She is suppose to be careful after the procedure for a couple of weeks but it is hard to tell a little girl to ease up on her playing. She did crash at supper time and slept for a bit. That is not helping tonight as she has no desire to go to bed now. Everything seems to have gone fine with the procedure and the hearing tests showed that she has great hearing at present. We are lined up for the kidney tests next Tuesday and Chemotherapy starting on Wednesday through Friday.

We also got a call to schedule our other children for EUAs. It is quite frustrating to hear how much things like that will cost. As I have said previously, it is important that everything needful is done to ensure our children's health and so the costs are secondary. However, because of the diagnosis of retinoblastoma all of the other children must undergo testing as a preventative measure. However the way health-care and insurance providers function these procedures are for different children so, at least for our policy, are subject to new deductibles and new maximum limits for the year. Given the necessity to use hospital facilities and anesthesiologist, this becomes quite costly. I will stop my rant about the health care system but suffice it to say, while some things are not as important, they can add to the pressure one feels in these situations.

I recognize that we have been extremely blessed to have the insurance coverage and resources to take care of Gracie. I am truly grateful for that and find peace in knowing that things will work out. Gracie is doing wonderfully and is going into chemotherapy very strong. We are excited to push forward with treatments. It is difficult to get back into your normal life when little seems normal anymore. However, everyday I am amazed at how many reach out in friendship to do all they can to help my family. We are very blessed and appreciate your kindness.

September 4, 2008 (Thursday)

Today was a waiting day. We were waiting for a phone call that told us Gracie's port-a-cath insertion would be at 7:45AM tomorrow. We are waiting for information on Monday's EUAs for the other kids, waiting to find out that the hearing test can be performed tomorrow with the port-a-cath insertion, waiting to find out if chemotherapy might start on Tuesday (right after the kidney function tests) next week and just waiting for chemotherapy to start so that we can start battling the cancer.
So it was great news that the hearing test can be performed tomorrow along with the port-a-cath insertion and we are excited that chemotherapy may get an early start next week, so that Gracie and her mom can return home on Thursday night or Friday morning. That would be especially exciting for me!
We continue to feel tremendous support from people from all over. Today we found out that members from our local LDS (Church of Jesus Christ of Latter-Day Saints) ward planned to fast and pray specifically for Gracie's well-being this coming Sunday. I am grateful for the love and faith that this shows. I am also confident that God does hear each humble prayer and that Gracie can only be helped by such a fast.
I offer a brief explanation of a fast as I know many readers may have different definitions for a fast or be unaware of the practice. In this context fasting is going without food or water for a period of approximately 24 hours. This usually entails not eating or drinking from after supper on Saturday until supper on Sunday. An essential part of the fast is prayer. Prayers are given throughout the fast and help one focus on the specific purposes of their fast. In LDS congregational fasts are held once a month, usually on the first Sunday of the month (individuals are free to fast at any time but one day a month is designated as a time for the entire congregation to fast together). However, each individual member is free to select the purpose of their fast. Oftimes one fasts for help with life decisions, health of family member, safety or recovery of other individuals, etc. Additionally the cost of the meals missed during the fast are donated as fast offerings to help provide life's necessities to those less-fortunate. Sometimes a congregation will be invited to unite in fasting for a common purpose and such an invitation was extended to fast for Gracie in her battle with retinoblastoma.
We are again grateful for the support of so many individuals and the love they have shown. We have heard from many of their prayers and fasting on Gracie's behalf and are confident that Gracie will be blessed through your continued show of faith and love.

September 3, 2008 (Wednesday)

Today was frustrating in many ways but ended on a real positive note for us. We found out early in the morning that the appointment today regarding the port-a-cath was simply a consultation with the surgeons and not the actual insertion of the port-a-cath. So Gracie and her mom met with the surgeons to discuss what they were going to do. We already knew what the plan was and Gracie had already gone under anesthesia twice in the last 9 days so we were pretty clear about things but I guess it never hurts to prepare. The actual insertion will be on Friday some time. Then we have confirmation of the EUAs for the other kids on Monday at some yet to be determined time.

That is when the great news comes in. Tonight we got an e-mail from Gracie's cancer coordinator! We were beginning to think that it would be my wife for the duration. However, they actually do have someone that tries to coordinate everything from doctor's visits, surgeries, chemotherapy, lodging, back-up lodging and your general comfort while going through this process. Our coordinator sent us lots of phone numbers and information on next weeks chemotherapy sessions and plans. She sounds like she will be in regular communication and help to sort out any further issues. It was nice to hear from her!

Still it was a hard day when we realized that the procedure on Friday will be the first of many that starts causing our little Gracie some significant pain. After the insertion of the port-a-cath we will need to be careful in playing with her so as not to disrupt it or dislodge it or at least not cause her any further pain. Soon after chemotherapy starts and that is not exactly what anyone plans for their little innocent almost 3 year old. Also the time and resources necessary to go through chemotherapy with Gracie are beginning to weigh heavy on our minds. We are so blessed to have good friends and caring family members that significantly ease those burdens however they remain pressing for our little growing family.

It is interesting to see how her siblings and their friends react. Today as I walked my oldest child to school we met two friends at the entrance who immediately asked, "Does Gracie have a plastic eye yet?" The question was posed innocently and I answered, "No, not yet." To which a spontaneous and unanimous cheer erupted from these two friends, "Yeah! Hooray!" I laughed and began cheering right along with them. We are truly blessed and there is much to cheer about these days, despite our few little troubles.

As always, we thank you all for your prayers and your support. They mean so much to us and we have seen your exercise of faith benefit our family in so many ways. I was trying to list all of the churches, families and individuals that were praying for us the other day but had to stop because the list was too long and I would surely miss someone. It is truly humbling to see how a little girl's life can be impacted by the love of so many wonderful people. So again- Thank you all.

September 2, 2008 (Tuesday)

Today my wife and her mother took all of the children to Dr. O for dilated eye exams and prep for such exams under anesthesia. Dr. O was very excited to know that Dr. P had a treatment plan that included potentially saving the eye. She had high praise for that group and seemed interested to know how things work out. She told my wife that the team here did not have the experience or expertise to recommend such a course but was glad that Dr. P's group was so close.
The tests went fine today. There were no additional signs of retinoblastoma in any of the other kids or my wife (apparently Dr. O had a look at my wife's retinas as well). Next monday EUAs will be done for the kids under 6.
The plan is to get the port-a-cath put in tomorrow, however nobody called back tomorrow to tell us how early we were to be there or even confirm what time the procedure was. It is frustrating as there were lots of scheduling issues today that my wife had to take care of but tomorrow's procedure has not been confirmed for us. We were able to speak with our insurance representative as Gracie has a case manager. It was confirmed that while the pediatric surgeons that we need to use tomorrow are normally not covered by our insurance, they would be partially covered tomorrow. It is nice to have a case manager to answer insurance questions but it is still confusing as to how much and when things need to be paid. Also it seems like there are alot of people going to be involved in Gracie's care and yet no one (except us) is coordinating between everyone. I am not sure if that is just our perception but it seems like things only get done after we (mostly my wonderful wife) makes a phone call or two.
Anyway, we still eagerly anticipate starting chemotherapy. It feels like that is the beginning of the end for cancer in our little girl. We are finding more and more support from friends and family each day and appreciate it very much. It continues to help and sustain us.

September 1, 2008 (Monday)

Today, being a holiday was quite a slow one as far as getting things arranged with doctors. My wife and I spent some time trying to accomplish some administrative tasks for Gracie's first round of treatments. Arranging vehicles, phones, children are all kind of crazy with chemotherapy, school, pre-school, work, medical appointments, other appointments, etc. We are also trying to work out the best way to keep track of all the schedules while Gracie and her mom are in a different city. We will all be making appointments and do not want to double book important events.

We are anxious to tomorrow morning to roll around so that we can speak with doctors offices and clear up some of the arrangements for the next week. We also have appointments for Gracie's siblings to see our pediatric ophthalmologist, Dr. O tomorrow morning. Since bilateral retinoblastoma is hereditary, they all have a greater risk and need to be monitored. This is a start to that process. Any kids under 6 years old that have family history (which suddenly we do) need to undergo regular EUA (exams under anesthesia) as well. So the EUAs are scheduled for a week from now as well. Hopefully all is clear with the other kids. If not it is better to know sooner and avoid any real growth in the cancer.

Gracie seems to have now figured out that there is something wrong with her eye. She sometimes pretends to reach into the corner of her eye and pinch something. Then she will show it to you and say, "Look, I got it!" If only that was all we were looking for.

As always thanks for your prayers and continued support.