Sunday, March 28, 2010

Saturday, the 27th

Drew's lack of energy proves that his counts are steadily dropping. He should bottom out sometime around the 7th-10th day after chemo starts. He is so, so tired. But, he begs to go to Clay's baseball game. His color is good and no fever, so Dr. Hajjar is comfortable with it. He lasts 3 innings and has to go get in the van to lie down. Pain level is minimal, and with the Zofran, his nausea has been mild. God is so good, and we are so thankful.

Tomorrow promises to be busy. Hope that Drew has a good night.

Friday, the 26th

Chemo finished up around 3 p.m. Doctor Hajjar had told us previously that he'd let Drew go this evening; but, after considering Drew's nausea, he wondered if allowing Drew to go would be wise. He's had quite a bit of nausea and hasn't eaten since Wednesday. In the hospital they would be able to at least keep Drew hydrated. So, he talked to Drew and shared with him his thinking. Of course, Drew was very disappointed, and Dr. Hajjar could tell. So, he told Drew that he'd give him until 7 p.m. to receive the intravenous fluid and then he'd re-evaluate him. In the meantime, Mom got a crash course in giving the Neuopogen shots that he'd have to have for 10 days to build his white blood count. Finally at 9:00, we are given our discharge papers. Drew slept well and had little pain through the night. It was good to be home and sleep in our own beds.

Friday, March 26, 2010

Thursday, the 25th

Hailey reported that Drew had a really painful night and didn't fall asleep until close to 5 a.m. The nausea has been pretty bad this morning, but, thankfully he hasn't thrown up at all. Dad came in and relieved Hailey for her to go home and get some sleep. It's a precious time for Lane and Drew. They are giving Drew Zofran for the nausea, but are having to also give him Benadryl at regular intervals. It seems to be helping greatly.

Chemo will end tomorrow at 3 p.m. He may even get to go home tomorrow night. Drew is restless and somewhat discouraged. He can't get out of bed with the chemo line, so basically, he's bed-bound for 48-60 hours. He wants a shower...he doesn't want to eat...and he just wants his own bed.

Wednesday, the 24th

Pre-chemo meds started today around noon, with chemo beginning at 3:00 p.m. Hailey came today in the afternoon and will stay overnight with Drew. Drew's pain level at the 9th rib site has increased making it more difficult for him to move around. The doctors think there's a possibility that Drew's 9th rib may be a complete break now. If you raise his shirt in the back, you can actually see the skin protruding at the site of the tumor. They have told us that in some circumstances, after just one round of chemo some tumors have shrunk enough that the pain is lessened dramatically. We are praying this to be the case.

Nausea with the chemo can start as early as 1 hour after intravenous treatment begins, so we will see how this day will go.

We do want to share with everyone how Drew's doing physically and all the information we know about the cancer. But, more than that, we want to share how God has ministered to our spiritual needs during this time. The Lord Jesus has been precious to us, and at every bend, every corner, He has offered us the marvelous reassurance that we are being held in His loving hand. Florida Hospital has been incredible. Nearly every single nurse has offered to pray with us, has directly and indirectly pointed Drew to the Lord Jesus, and has made us feel like they truly care. When we consider all the hospitals in Orlando and all the doctors we could have gotten, the Lord providentially guided our path to this doctor; to this hospital. We consider what may have happened to this precious boy had we not obeyed the Lord's leading in coming to Lock Haven Baptist Church 18 months ago, and it's almost overwhelming. When we didn't understand why the Lord was changing our direction from the mission field, He was already implimenting His plan for our lives. We just thank the Lord for being His and for His tender, loving mercies toward us.

Tuesday, March 23, 2010

Tuesday, the 23rd

Kim's sister stayed with Drew last night and what a help that was. Tina is a nurse and was able to oversee his care and make sure he was comfortable. Drew's pain was the worst it's been yet and was difficult to get under control, but he finally went to sleep around 4 a.m.

Bone marrow was extracted around noon. Drew was anesthesized for that procedure, and we are very thankful for that.

When Mom (Kim) came in the evening to relieve Dad, Drew had his own practical joke up his sleeve. Someone had brought Drew a whole bag of gag gifts and he wasted no time putting them to use. He had put a fake plastic cut, complete with real-looking stitches, on his forehead and wrapped his head up in gauze and medical tape. When Mom came in, she was upset and asked what had happened. "It's okay, Mom, I fell getting out of the wheelchair and hit the door frame." SIKE! he laughed after Mom nearly started crying. Bad thing is that Dad was in on the dirty trick. It's good to see Drew still has his sense of humor. What an awesome kid!

Chemo starts tomorrow around noon. Barring no problems, Drew may go home Friday night. Another day to give the Lord thanks for all He's done and is doing in our lives.

Monday, March 22, 2010

Monday, the 22nd

We were scheduled for surgery at 9:40 this morning. Had to be at the hospital by 7 a.m. Surgery went beautifully. We did not get to see Drew until 2 p.m. when he was sent up to his room. He was in pain and looked so pitiful. They had given him a cracker and a Sprite in recovery and were waiting to see how he tolerated food before letting him eat. We were thankful for that decision because he soon got very nauseated and threw all of the liquid and cracker up. He did feel a little better after that though, and they were able to get his pain under control.

Dr. Hajjar came in late afternoon and spent a great while talking and explaining all of the chosen treatment and possible side effects to all of us. A bit of possible good news: treatment may be shortened to 35 weeks instead of 48, barring no delays or infections. The newest revealed research indicates that Ewing's sarcoma is responding well to "compressed" treatments. In short, Drew will receive the same number of treatments, only condensed into more frequent time slots. This is only a tentative plan, however, for it will all depend on Drew's tolerance for the medications.

We had several decisions to make today regarding our choices for Drew and Drew's own preferences. We are thankful that the Lord gave us all a unity in those decisions.

Kim's sister flew in from Mississippi and has already been a HUGE blessing. She stayed with Drew tonight. At last check tonight, they were watching the Magics basketball game together.

Bone marrow test was put off until tomorrow for Drew's comfort. Chemo begins Wednesday.

Another day by the grace of God. We are reminded of the song, "Where Could I Go".

"...but when my souls needs manna from above, where could I go but to the Lord?"

Thursday, the 18th

Today we drove back to the hospital so that Drew could have his PET scan. We won't have any results for that until Monday.

Wednesday, the 17th

Today the preliminary results came back. Malignant tumor. We would have to wait for pathology to confirm the type of cancer, although Dr. Hajjar feels almost certain it is Ewing's sarcoma.

It is decided that Drew will be allowed to go home for the weekend because they cannot schedule his port until Monday. He is released just in time to get to church. What a blessing to see him in God's house, and to see him with God's people. Our church family continued to hold us up by meeting our physical needs and begging the Lord to meet our emotional and spiritual needs. And, indeed the Lord did.

With the confirmation of the definititive diagnosis, treatment could begin. We are just so thankful to know without a shadow of a doubt that the Lord has guided and has had His hand in the finding, the diagnosing, and the confirming of Drew's cancer. Knowing that ere before we entered into this valley, our Savior waited to meet us and walk us through. Before we ever even realized we had a need, He had provided. From the very first radiologist who saw the fracture (we have since been told that whoever read that x-ray had to be guided by God because the fracture was not one that was very obvious) all the way to being led to one of the best cancer centers in Florida, the Lord's hand has been evident. What a truly, truly wonderful God we serve.

Tuesday, the 16th

We had hoped that we would have some preliminary results this morning, but there were none. Nor were there any in the afternoon. The day passed slowly with Drew handling his pain very well. Lane and Kim had been trading places every night so that one parent stayed with Drew while the other stayed with the other kids. Tonight was Lane's night.

Our church had never been more precious to us than in those chaotic, confusion-filled first days that we waited and wondered and prayed. Ladies prepared meals, bought groceries, and took care of the needs that we never even considered. Hailey took up the slack in making sure that the other kids' everyday lives were disrupted as little as possible. And, we waited.

Tuesday, March 16, 2010

Monday, the 15th

We were initially told that Drew would have his biopsy done this morning, and that he would also have a port put in at the same time so that chemo could begin immediately. However, Dr. Hajjar came in later to say that he disagreed with putting in the port at that time. Sometimes in radiology-guided needle biopsies, you don't get a good reading. If the cells are dead, then there would need to be a biopsy cutting part of the tumor off. They were trying to avoid that biopsy, but if the reading wasn't good, it would be the only way to get a definitive answer. Since he would need to be anesthesized for the port, he didn't want to do the port, do the needle biopsy, and then realize tomorrow that he'd have to go in and redo the biopsy. So the port would wait.

It would be at least 24 hours to know the results of the biopsy. Still, the carefully-chosen words of the nurses spoke volumes of what their suspicions were. The words "cancer" and "malignant" were used more frequently but always with the understanding that their diagnosis could be proven wrong by the biopsy results. It was very clear to us that they felt fairly certain of what they were dealing with and were only waiting for an official report.

Drew's pain level increased after the biopsy and it was a good while before the nurses had it managed enough that he rested comfortably.

The wait had to be the hardest part.

Sunday, May 14th

In the morning, Dr. Paul Helchinki came in first. He explained that their suspicions were that Drew had a malignant tumor growing along his spine. He mentioned the specific "Ewing's Sarcoma", but was very careful to say that all the tests weren't in and he couldn't say definitively until everything, including the biopsy, were in. Dr. Sewsky, partnered with Dr. Hajjar, also came came in to speak with me. Drew and I listened as he elaborated some on what Dr. Helchinki had already said, going a step further to say that he believed Drew had either Ewing's sarcoma or Rabdomyo sarcoma. The basis for their preliminary diagnosis was the pattern of the tumor, his CT scans, and his MRI. When I asked him if there were any chance he could be wrong, he confirmed that there was absolutely a chance he could be wrong. Dr. Sewsky was very compassionate, very patient, and even waited 30 minutes of his time for Lane to get here to speak with him personally. Lane had preached and was on his way.

We were again blessed on Sunday to have many of our precious church family come after church and spend the afternoon with us. What an encouragement they all were. One of our men held a prayer meeting in the waiting room with probably 15 or so from Lock Haven.

Lane and I had decided that we would try to figure out a schedule so that both of us could stay, and both of us could be home with our other children. We worked it out so that we alternated nights and days. Our church family organized bringing in food and supplies for the kids for the week, and by God's mercies, we waited.

Saturday, March 13th

A little after midnight, the testing began. First was the MRI, with contrast and without. It took over 3 hours to complete and was physically taxing because Drew had to lay flat on his back the whole time. The CT was also done in the early morning hours. Drew had lots of visitors---probably 30 or more in all. The bone scan was also completed. His pain level was up and down, but definitely increased because of all the procedures he'd undergone.

Many of our church family, some of the youth group, and others crowded his tiny little room to visit with him. His spirits were lifted, and he had a good time laughing and joking with everybody.

March 12th

After arriving at the hospital and some initial exams, they sent Drew by ambulance to a sister hospital in Orlando. They wanted him to be in a more specialized hospital--one that worked with pediatric patients. At 5:30 we arrived at Florida Hospital South and were told that there was not a single bed in the whole hospital available. They put is in the "pediatric holding unit" to await a conference with the pediatric surgeon. The thought was that the blood filling the outside of Drew's right lung needed to be drained. We waited until 3:00 p.m. that afternoon, and still no sign of anybody. The nurse hadn't even come in to check on us. Finally I went to the nurses' station to ask if they knew how much longer we could expect to wait. The doctor on call was sitting at the station and explained that someone had forgotten to page the surgeon so we would have to wait until he could come by. In a while, the surgeon did come in and took a look at Drew's Ct. While he's looking at the screen, another doctor was in the same unit seeing one of his patients. Dr. Hajjar looked over the surgeon's shoulder and said simply, "It's not bleeding on the lung; there's a mass." After that, several doctors came in to talk with us and to explain all the tests that would be taking place. To be honest, I never heard a word after he used the word "tumor". By the end of the afternoon, they had a room on the pediatric oncology floor and Drew was moved to his new room. We were warned that because it was the weekend, results would be slow. So, with our minds and thoughts racing, we waited for it all to begin.

From the Beginning......

Many have asked for a timeline of events that led to Drew's diagnosis of cancer. We are so thankful for Drew, and we are thankful for the friends and family that have showered this precious young man with love and prayer. In an attempt to answer everyone's questions...we begin.

Drew has been complaining of a backache for about 10 weeks now. At first, we thought it was a sports injury. He is active in baseball, football, and of course, WWF with his brothers:-) And, the pain was not a constant thing. Neither was it a terrible pain. We considered that he may have a pinched nerve. Four weeks ago, after the pain kept getting progressively worse, we decided that we'd take him to our doctor---maybe he needed therapy. Maybe it was a muscle tear. Our family doctor examined Drew and seemed puzzled. She told us Drew had a great range of motion. He could move every direction she asked him to. She explained that she didn't think Drew had any spine problems, but just to be sure, she sent him for an x-ray. We went in the next morning to get the results. She opened the file and puzzled said, "Well, looks like Drew may have a possible fracture to the 9th rib on his right side." I was really confused, because as far as we could remember, Drew hadn't had any incidents that could have caused a broken rib. Our doctor's suggestion was to do a CT scan to confirm the broken rib. So, as soon as I left her office I went back to the lab that did Drew's x-ray. They did the CT at 4:00 p.m. and the radiologist told us that our family doctor would follow up with us at our next appointment. We went on home, and since Drew was in pain, he went to bed after supper. At midnight, the radiologist called us and explained that his CT had just been read and that Drew's right lung had a moderate hemothorax. Their initial thought was that he had broken the rib, and the broken rib had punctured the lung. So, we were asked to bring him to the hospital immediately. We got to the hospital at 12:30 a.m. on March 12th.