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