Wednesday, August 29, 2007

August 29, 2007

David's hemoglobin was up a little today from his last count. That is encouraging. The nurse said that he may have hit his low for this round of chemo. It has been explained to us that the side effects are like a see-saw. Up and down. Usually, they try to time it so that the next round of chemo comes when his body is the healthiest that it can be. We are hoping that he will start to feel somewhat better and start to sleep again at night. I am quite tired as I haven't been sleeping well since this whole ordeal started about a month ago.

We are all fighting off colds...including David. It seems to be going around. Even though we are handwashing fiends and we aren't going anywhere to be around people, we have still picked it up. Hopefully it will stay mild and be shortlived.

I am doing my best to keep up with all the housework. So far, I haven't done too bad. It is helpful that Hannah is in school now since that is one less person in the house to make messes during the day. She is really enjoying it, too!

I will leave you today with a quote from a book that I have been reading.

"In the person of his Son, [God] is always in our midst, as the one who holds each and every aspect of creation, including all of its evil aspects, in his hands so that he may carry it to where it accomplishes exactly what he wants."
-from Suffering and the Sovereignty of God by John Piper and Justin Taylor

Thanks for reading.

-Kim

Tuesday, August 28, 2007

August 28, 2007

David has not been sleeping well. He must be uncomfortable, but since he can't say anything, it is hard to determine exactly what ails him. He was a little happier yesterday during the day, so that was nice.

According to yesterday's blood counts, his hemoglobin is quite low. Everything else seems to be fine, but if his hemoglobin continues to drop, they may have to give him a transfusion. We are hoping and praying that this won't be the case.

Hannah started school today. I always thought that this would be a difficult day for me, but it wasn't. With all the care that David is requiring lately, it has been hard for me to keep her occupied. I know that she is going to have so much fun at school that it was easy for me to let her go.

I gave you all the wrong email address for my friend Emily who will be coordinating things for me. The correct one is embeasley@gmail.com I went back and changed it on the last entry, but just in case you all need it.

Some people have been wondering how our pediatrician was able to catch David's retinoblastoma. Here is a picture that shows you kind of what she saw during her exam. We are also able to see this at times when David looks at the light in just the right way. This is not a picture of David, but the white reflex is what we are able to see.






-Kim

Sunday, August 26, 2007

August 26, 2007

Many people have been asking us what they can do for us. We have been amazed at how willing people are to carry this burden with us.

First of all we need prayer. Here are some specific things that you can pray:

1. Pray for strength. Rob and I both need physical and mental strength in order to keep on functioning. This has added a whole lot more to each of our daily routines, and without supernatural sustainance, we won't make it through. Pray for strong immune systems for the whole family as we enter into cold and flu season. Pray for our family as a whole to become a stronger unit.

2. Pray for healing. Our desire is that the tumor would disappear, than no new tumors would grow, and that David would regain some of his lost sight in that eye.

3. Pray that we won't waste this circumstance. It is so easy in times of pain and suffering to become angry, bitter, and self absorbed. Please pray that David's cancer will only force us to cling more tightly to the Savior. Pray that through this, we would learn more about our wonderful God than ever before in our lives. Pray that this circumstance would soften the hearts of Hannah and Isaac to be able to trust God themselves one day. Pray that the retelling of this will cause David to walk with the Lord. Pray that as a result of this, our whole family will develop an uncommon faith and trust in the Lord. Pray that as we deal with all the details that we will continue to look out to other hurting people and touch them with the love of Christ. I guess this request is the most important.

So, prayer is the one thing that we would ask of all of you.

Some of you have asked us how you can help in other ways. Here is a list of things that we would find most helpful.

1. Gas cards - travelling back and forth to Durham takes a lot of gas. We usually buy gas at Walmart, Sheetz, or Gate Petroleum.

2. Prepaid Visa Cards - when we are at the hospital, we often have to buy meals, pick up prescriptions, and do other things related to David's care. These cards allow us to be able to do all of these things right there at the hospital so that we don't have to drive all around town and add to an already full and hectic day.

3. Restaurant Gift Cards - the long days at the hospital make evening meals rather difficult. When we don't have to worry about dinner, the day is much less stressful. We are not picky about restaurants, but some suggestions near our house are: Wendy's, IHOP, Chick-fil-A, Panera Bread, Papa John's, and Arby's.

4. Meals, Babysitting, etc. - some people have asked if they can help by cooking a meal, babysitting, running errands, and other things like this. Our good friend, Emily Beasley, is going to be coordinating all of these things for me. You can contact her at: 336-207-3916 or embeasley@gmail.com

5. Moral Support - we love getting your letter, emails, and words of encouragement. It is a great testimony to our kids, and I have saved every letter and email. Just knowing that we crossed your mind, that you prayed for us, and that we don't stand alone does more for us than you will ever know. Feel free to write to us. I can't promise a response, but know that we read each and every letter (sometimes more than once)! If you don't have our address, email me, and I will send it to you. rokihais@yahoo.com

Thank you all again. David is awake, so I must go. I will update you on his progress more later.

-Kim

Tuesday, August 21, 2007

August 21, 2007

David received his first round of chemo yesterday. It was about a 7 hour process. A long day.

The little guy did great. He was happy and active the whole time. Rob and I learned several important things about how to care for him once we got him home - including how to give him a daily shot.

I alway find the days at the hospital the hardest to handle. It is so heavy being there around all of those very very sick kids. By the time I get home, I am super tired. I am finding it almost essential to have Rob there with me on those days since he is my best moral support. We are hoping that he will be able to be there each time.

During the night and this morning, David has been somewhat fussier than normal. He has a hard time staying asleep. I think this has something to do with being a little more gassy than normal - likely a side effect of the chemo. He is currently trying to sleep on my shoulder. I would love to be able to take a small nap today since last night was a little rough.

-Kim

David and his Daffy Duck bandaid.

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Friday, August 17, 2007

August 17, 2007

David got his IV port put in yesterday. He did very very well. Now, we just have to make sure that it doesn't get infected before the incisions heal.

He is supposed to have his first chemo treatment on Monday, but he has a little cold, so we aren't sure if this will postpone that. I am anxious to get started, but I don't want to push it before his body is ready.

-Kim

Wednesday, August 15, 2007

August 15, 2007

I took David for his hearing test today. I guess they have to monitor his hearing since the chemo can sometimes damage it.

Tomorrow we will be over at DUMC for most of the day while they insert the IV port. It will be another long day, but they have told us that we will be meeting with lots of people while David is in surgery, so that will take up our down time. They also told us that we shouldn't have to stay overnight, which would be really nice.

Monday, the chemo will start. They have told us that is will take 1-1.5 hours to administer, and then we should be able to head right on home.

I must say that I am very nervous as it gets closer to the time to start this treatment. I am so thankful that Rob and I are on the same page, though. We have needed that unity so much during this time. We know that God is in control, even though the future is frightening at this point.

-Kim

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Tuesday, August 14, 2007

August 14, 2007

Tomorrow I will be taking David to Duke University Medical Center (DUMC) for some pre-chemo testing.

Thursday, we will go in early in the morning for them to implant the IV port for him to more easily be given chemo and have blood drawn. This is usually an outpatient surgery. I don't know if they will keep us overnight for that or not, but I am gearing up for a stay. Rob might come home to be with Hannah and Isaac if they keep David overnight.

I think that treatment, no matter what, will involve several trips a month to DUMC for treatment and testing and etc.

We are hoping to speak to the financial person soon to come up with a plan for payment of all the treatment, tests, hospital stays, doctors fees, and other items that will need to be paid for.

Thanks again to everyone for keeping up with us and praying for us.

-Kim

Monday, August 13, 2007

August 13, 2007

Today, we are very thankful and encouraged because we had a great meeting with the oncology team at Duke that specializes in retinoblastoma. They were very helpful, patient, and answered all of our thousands of questions.

We feel that God was with us today and is really leading us in our decision. For the last couple of days and even as of this morning, we both felt that the oncology team would have to give us some VERY strong reasons to do a chemotherapy treatment in order for us to change our mind. We were almost 99% certain that removing the eye was the safest, quickest, and most effective route. Today, we learned otherwise, and have made an almost complete turnaround.

We learned, contrary to what we understood over the past couple of weeks, that there is still a possibility that this is a hereditary disorder, even though we have had no instances occur in either of our families. In other words, the disorder might be inherited, but David is the only one in our family so far that has actually had cells mutate because of it. This is very important, because the hereditary form has a much higher probability of showing up in the other eye. The doctor also shared that there are were two pixels that showed up on the CT scan in his “healthy” eye that may or may not be mutating cells. This causes us to lean strongly towards the chemotherapy treatment, which will hopefully shrink/kill the existing tumor and also kill any other diseased cells that are too small for us to see at this point.

Although there are still risks to chemotherapy, the ones described to us were less than what we might have expected. However, with the other information we received today, we think we are leaning towards at least giving this a shot.

As always, David was a very good boy today. He talked and smiled and only cried a little when they drew blood for lab work. He also loaded some diapers and did some push ups on the exam table to further impress the doctors and nurses.

We are so thankful to everyone for their prayers and support and we really feel the Lord’s leading at this time. We are seeing that it is true that God gives wisdom generously to those who ask. David is an excellent little boy and God has an excellent plan for his life. We also want to thank everyone for praying for our courage and strength during this process. We don’t know how we have strength now, but we do, and it must be because of our Strong Tower. Please continue to pray as we make a final decision and we will keep you posted. Pray because God is listening!

-Rob

Saturday, August 11, 2007

August 11, 2007

It has been a long two days.

We made it to the Eye Center at about 8:30am yesterday, and began the LLLLLOOOOONNNNNNNNGGGGGGGG process of checking in, dressing, medicating, and tagging David for his exam. They finally came to take him at about 10:45am. He did very very well during this whole process. He was cheerful or asleep the whole time. We were greatful for that since he had not been able to eat since about 4am. The procedure lasted a little more than an hour.

The doctor said that there was indeed a large tumor in David's right eye. No surprise there. He found his left eye to be clear and healthy, so that was positive. From the size, placement, etc. of the tumor, we have only two options. 1.) We can remove the eye and the tumor with it. This would pretty much get rid of the cancer as we see it now. There is no guarantee that David will not develop more tumors in his other eye or other places in the body, but it would get rid of this current tumor and likely be the end of it. 2.) We can do a 6 month round of chemotherapy with the goal of getting rid of the tumor or killing it (we aren't really sure what that means). If this works, David would get to keep his eye and the limited sight that it would provide. 20/400 or worse is what the doctor predicts.

We went from that meeting with the doctor over to have a CT scan done. The scan didn't show any spread of the tumor into the brain, so that was good.

Then we had to wait around for several hours in a recovery room until a hospital room became available in the main building. It was a long and uncomfortable process. Food was scarce since we weren't able to get to the cafeteria until after they had removed all the lunch selection. We did finally get a room. It was tiny and loud and uncomfortable, but all the nurses and staff were very kind and friendly and helpful. I didn't get much sleep last night, but when we got home today, all three of us were able to take a nice long nap.

We have a meeting on Monday with the Pediatric Oncologists to discuss the chemotherapy treatment in more depth so that we can make a more informed choice about David's treatment. We do know that before each round of chemo, David would have to go through the same process that he did yesterday in order to track the tumor's progress. They would implant a port in his chest to deliver the chemo so that they don't have to stick him with needles every time. We are also hoping to get a clearer picture of the financial end of all of this at that time too.

Rob and I are tired. This has been a very long two weeks, and the road ahead promises to be just as difficult. At times this all seems very real, and at times we can't believe it. As we try to see our way, it feels like we have 20/400 vision or worse. We do know that God has us in the palm of His hand, and that He is taking care of things that we won't ever know about.

So, now we are down to choices. At this point, we flip flop in between the two.

-Kim

Thursday, August 9, 2007

August 9, 2007

David and I got back yesterday from a short trip to visit with my parents in Waxhaw. It was nice to be able to be down there again. Hannah and Isaac love the freedom to play outdoors - even though the heat is extreme. They will stay until Sunday.

Grandma Goodall doted on David. She really enjoyed being able to have a little one around again. David did a fine job smiling and cooing at her. He even napped with her a little bit. I think they both enjoyed each other enormously, and it was sweet to watch.

I am still not sure what time we have to be in Raleigh tomorrow. I have to call at the end of the day to get the exact time. I don't look forward to enforcing the fast that they prescribed for David. You can't really reason with a 2 month old. I am hoping that his procedure will be early in the morning so that he will sleep most of the time leading up to it. We won't be getting home until Saturday sometime. I will update you all as soon as possible.

-Kim

Friday, August 3, 2007

August 3, 2007

Today, we drove over to Duke University Eye Center. The center is huge and impressive. We met with a wonderful doctor and team of interns.

It was confirmed that David does indeed have a Retinoblastoma in his right eye. That's the bad news.

The good news is, it seems to be only one tumor in the right eye. His left eye appears to be perfectly healthy. It seems that the tumor has not spread outside of the eye. We also learned that the doctor who will continue David's care from this point forward is one of the premiere specialists in the care of this disease. We are also blessed that the hospital is so close to our house - only about an hour away. We most likely won't have to travel any significant distances to allow David to have the very best care.

The next step is:

David will be going back to the Eye Center next Friday (August 10) for a CT scan and an exam under anesthesia. This is so the doctor and oncologist can get a better feel of where the tumor is and take measurements. During the CT scan, they will also be making sure that the cancer has not spread. He will stay in the hospital overnight on Friday to make sure that he does not have any adverse reactions to the anesthesia. I think this is just a precaution since he is so young. After this, they will be able to advise us on what the best treatment options are.

Right now, we are just feeling overwhelmingly peaceful. Peaceful and sleepy. It was a long day, but more than ever, we sense that God is in control and we can rest. I have been singing a song in my head all day today. It comes Psalms. I know that it may be a very very long road ahead, but today, my heart is full of praise. Now, tell me that isn't a gift from God.


Come bless the Lord, all you servants of the Lord,
Who stand by night in the house of the Lord.
Lift up your hands in the holy place;
And bless the Lord, and bless the Lord.
(From Psalm 134)
-Kim

Thursday, August 2, 2007

Monday, July 30

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This was the day that we were told about David's condition.

The Opthamologist found what he is 95% sure is a rare malignant cancer called Retinoblastoma in David's right eye. He immediately referred us to Duke Eye Center in Raleigh, NC. We will be going to Raleigh for our initial consultation with Dr. Sharron Freedman on Friday, August 3rd at 9:30am.

Right now, we don't really know what we are dealing with, but we hope that we will be able to have more answers soon. In the meantime, enjoy these pictures of David and his sister and brother.



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With cool shades on.

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