Friday, October 21, 2011

Drew walking the hall with physical therapist after scoliosis surgery.

The incision to repair the scoliosis.

Thursday, October 20, 2011

Spine Surgery

Drew had to be at the hospital at 5:30 the morning of surgery, Monday the 17th. The hardest thing I've ever done is not go to his surgery that morning. I came down with the flu on Saturday and had stayed home from church Sunday hoping that I'd be well enough. But, Monday morning came, and I knew that it wouldn't do Drew any good at all for me to go as sick as I was. And, I didn't want to risk giving the flu to someone else---maybe someone who was already very ill. What a lesson for me. I've always been able to be with him during his surgeries, so not being there was difficult for me. The Lord softly reminded me that He is in control---whether I am there "overseeing" or not. Drew came through surgery wonderfully. The surgeon was very, very pleased with how well things went; Drew didn't even need the blood transfusion that had been prepared.

The days after surgery have been difficult. Because of my flu, Lane stayed with Drew from Monday until Wednesday afternoon. God knew and prepared for what I really hadn't anticipated. Daddy was able to lift Drew and turn him in a non-stop effort to find a comfortable spot. The incision is from his neck to his hip, so his pain level is great, and every movement is agonizing. But, I am not strong like Daddy, and my first night with Drew was tough. Getting him turned over and up and into the chair has been alot harder than I thought it would be, and I know I haven't made it as comfortable has Daddy did. But, Drew is slowly regaining some mobility and able to help a little with turning himself over. He has met every milestone they've set for him: the first day--sit up; the second day--walk; the third day--shower. The only thing he hasn't done yet is eat. He hasn't eaten since Sunday, and he will have to do that before he can go home.

Thank you, dear Lord, for the wonderful grace you've given us, and for Your careful watchcare over us.

Wednesday, September 21, 2011

More Surgery

Praise the Lord, all the results from August's scans have been really good reports. No cancer cells are showing up anywhere in his body! Thank you, Jesus! We are really thankful for those good reports, but the other reports we've gotten this month haven't been as positive. When the doctors initially removed the pineapple-sized tumor, they also had to remove 4 of his back ribs because of residual cancer cells on those bones. Later on, they had to go in and remove another rib simply because it had become so fragile and brittle that Drew was breaking that rib every month. With a total of 5 ribs removed, there has been no stability for his frame. We began tracking the Scoliosis (curving) of his spine the first part of 2010. Since March of this year, his curvature has quickly climbed to 67%. The doctor was alarmed at the rate and explained that the spine surgery cannot wait. He ordered an MRI to be done as quickly as possible, and barring nothing showing up on the spinal MRI, Drew's spine will be operated within the next couple of weeks. They will place two titanium rods secured by 25-30 screws. The extensive surgery will require months of recovery, but it should correct the problem completely. We are also seeing a nephrologist (kidney specialist). For the past 6 months Drew's creatine has been consistently high indicating definite kidney damage. One of Drew's chemo drugs is known to cause damage, but the puzzling part of the equation is that Drew's high levels did not happen until months after chemo was finished. The damage could be a side-effect of one of the anesthesia medications from past surgeries or it could be simply a totally unrelated condition that is just now showing up.

So, for now we await the scheduling of Drew's spine surgery in prayerful anticipation that the surgery will be a help to Drew and will allow him to live with a little less pain. Thank you for your continued prayers for him.

Monday, August 29, 2011

Summer, 2011

It doesn't seem possible that 3 months have passed already. We had such a wonderful summer! Drew recuperated very well from his surgery in May, and in June went to youth camp in Georgia. What an awesome time our whole youth group had together---and brought back several trophies from sports competitions, too. We just had a great, great time with our Jr. campers and then the teens the very next week. July brought a special treat for Drew, Clay, and Benji. Some of our most precious friends, Brother Michael and Mrs. Nahid Scahill, invited the boys out to California to spend two weeks with their family. I can't even begin to describe how much fun they had. They went hiking, played basketball everyday, went camping, and swam in the Scahill's pool countless hours. It was a trip that Drew will never forget, and we just thank God and the Scahill's for offering such a priceless treasure to them. Then came August and our Vacation Bible School ministry that our teen group have a VERY active part in. Drew did a great job doing our puppet skits every night and working with the kids in the games department.
We are just so full of gratitude for the things that Drew has enjoyed this summer and for each special milestone in his healing. He's feeling stronger, but he still has quite a bit of pain everyday and usually gets tired very easily. And, we just continue to look forward in the hope that the Lord holds our very lives in His hands and does all things well.

Saturday, May 21, 2011

Saturday, May 21, 2011

Drew has been out of the hospital a week today. As I write this, I am overcome with praise as I watch my sweet young man outside with his brothers. He's not able to play, but he can watch:-) We are so thankful; so, so thankful.

He is healing well. His stitches have not dissolved yet, and that is causing him some aggravation. We caught him trying to pull them out himself:-( I know it itches like crazy. He is doing great with his pain tolerance. He hasn't needed anything for pain in 4 days. We are in awe of how the Lord has touched his body. The biopsies thus far have been clean. Drew has a follow-up appointment Monday.

We thank each of you for praying for Drew and will keep the blog updated on Drew's progress and potential chest wall reconstruction surgery in the early fall.

Thursday, May 12, 2011

Surgery Day, May 11th

Surgery was supposed to begin at 8 a.m. today. Because of an emergency surgery on a 3-week-old baby, Drew's surgery didn't start until 10. We were anticipating a 2-hour surgery, and it was right at 2 hours. The surgeon is very, very encouraged by what he found. The "mass" turned out to be mostly water!! The rib had been broken at least 4 times since last July, and was removed completely. It was, as they thought, totally useless in providing support any longer. Everything was sent to the lab for a complete biopsy, but the doctor is very hopeful that nothing is going to be found! He actually said it was the best he could have hoped for! We are rejoicing and literally ready to have a shouting fit!

Drew will have to have the chest tube for likely 2 days. We are hoping to get labs by Friday.

Thank you, thank you, thank you, Lord! Thank you to all of you sweet friends for praying!

May 9th

Surgery is scheduled for Wednesday, May 11th.

Dear Lord, my fears assail me. Within, I know You are my God. You hold everything in Your tender hand, and nothing takes You by surprise. And, even in my trembling, , I trust You, Lord. I think of the frantic father so burdened for his child in Mark 9:24:

"And straightway the father of the child cried out, and said with tears, Lord I believe; help thou mine unbelief."

Thank you to all of you following this blog for caring about Drew. Your prayers are worth more to us than all the gold in the world.

May 4th

The results of the PET and CT scans are very concerning to us. The "mass" that they biopsied after February's scan is still there, and worse, it is even bigger than it was. Drew's oncologist still thinks that the mass is a result of the refractures of rib #6. And, there it is, as plain as day, a new fracture. But, the pediatric surgeon is not sure that the "hot spot" is just symptomatic of the rib problem. Although it was biopsied in February, the results could be flawed because they only did a needle-guided biopsy at that time. What that means is that the center of this "mass" is not showing any cancer cells; but, a needle biopsy doesn't test the whole mass--only the center. Though Dr. Hajjar (the oncologist) isn't overly-worried, Dr. Thompson (the surgeon) shows more concern. And, that concerns us. For this to be a cancerous tumor, it had to start growing during chemotherapy, and that doesn't make sense. But, the surgeon explained that it could be a different type of tumor or even the same Ewing's tumor but now resistent to that chemo regimen.

They are going to schedule Drew for another surgery. This time to totally remove rib #6. Though we aren't sure how many times he's re-fractured the rib, it is for certain that the rib has been damaged to the point that it is no longer offering any support to his frame, and in fact, with the jagged edges, could possibly puncture a lung if Drew were to fall. While they are removing rib #6, they will take the whole "mass" section and do a regular biopsy to alleviate all our fears.

Thursday, April 28, 2011

April 28th

Drew's PET scan will be Monday, May 2nd. If the scan comes back clean, Drew will be scheduled within a week for surgery to remove rib #6. The surgeon feels like this is our best option considering the rib has been weakened by each re-break and is offering no support to Drew at all. Moreover, because the rib has healed with somewhat of a jagged edge, if Drew were to fall, he could puncture his lung. Provided the scan is clean, the rib and his port will be removed at the same time.

He will be X-rayed again August 1st to see how much the spine has curved since February. If the current rate of curvature continues, we have no choice but to do a total chest wall reconstruction. He will have titanium rods put in to give his spine the support it needs. But, there's a small chance that Drew's muscles will strengthen enough to keep the spine from curving anymore. That's certainly what we are praying for.

He's feeling great these days. He has alot of back pain---mostly from the scoliosis. He's done very well catching himself up in school and will finish the year at the same time as the other children. His hair has grown back---a very light blonde. He's gotten his color back, and since Drew is naturally dark-complexioned, his light hair and dark skin make him look like a surfer!

Thank you all for praying, and we will update as soon as we know the results of Monday's scan.

Friday, April 8, 2011

New Issues

Drew's counts were good when we went to his March appointment. Thank the Lord for that. His weight dropped a few pounds, but that doesn't concern us because with increased strength, Drew is becoming more active. His color looks good; he feels good. But, we are struggling with a recurring issue: the breaking and re-breaking of rib #6. When we took him to the ER this time with a suspected re-break, he had done nothing more than run for about 200 feet in a relay race at a youth activity. He didn't fall; he didn't bump anything. Just ran. Our doctor decided it was time to consult a specialist, so he sent us to a rib reconstructionist--Dr. Woo. A very respected doctor in his field, we were anxious to see him to see what can be done to keep this re-break from continuing to happen. He looked at Drew's X-rays and immediately suggested that rib #6 just be removed altogether. I initially questioned that because he's already lost ribs #7, #8, #9, and #10. It didn't make sense to me to remove another one. I voiced my concerns that taking out rib #6 would only create a domino effect leading to the removal of #5, then later #4 and so on. But, he explained that rib #6 continues to re-break because it never should have been broken in the first place. The surgeon broke it and pulled it down to cover the vast space left by the removal of the other ribs. But, because the rib was not designed that way, it's placed undue pressure on that rib. His opinion is that the rib will continue to break unless it is removed. We have an appointment with the surgeon on the 19th to discuss removing it. However, we are in much prayer about that; we do not have peace with that surgery right now. The other news Dr. Woo gave us was a little more disheartening. Because of the removal of all the ribs, Drew now has scoliosis of the spine. Without the 4 ribs for support, his spine has curved since the surgery 9 months ago about 40%. If the next X-ray reveals continual curvature, he will have to have a total chest wall reconstruction surgery. This surgery would give him support and give him relief for the back pain he's had. But, because he's still growing, he could outgrow the titanium rods which will be implanted during surgery. That would lead to a new surgery later down the road. On the other hand, if we do not do the reconstruction surgery and his spine continues to curve, he will have a great deal more pain. We need the Lord's direction and wisdom. And, grace.

Wednesday, April 6, 2011

February's biopsy

We haven't updated the blog in sometime. The results of the scans in February sent us on an emotional roller coaster for a couple of weeks. The first reading from CT and PET was that there was a new tumor in the same ribcage of the initial tumor. Surely not. But, there it was on the results---this mass. We stared in disbelief and tried to wrap our minds around it all. Our doctor phoned to explain the readings, and to also try to calm our worst fears. He theorized that this was not a new tumor at all, but instead tissue and calcium surrounding the one rib that had been broken in September after the surgery. He felt like that area had some swelling and possibly some bleeding, but that in all likelihood, not a new tumor. Drew's case was brought before a board of physicians to get their concensus on the readings; they all agreed based on the location of this new mass and the fact that the mass was located in the exact spot that the rib had been broken and re-broken. It was decided that because the area was easily accessible and wouldn't require being cut into, they would do a subcutaneous biopsy. We planned the procedure and waited....and prayed. Originally, it was thought that Drew would only need a local anesthetic, but the anestesiologist decided to go ahead and do a general to save Drew from any discomfort. It took two days for the results to come back, but the sweetest words were, "Biopsy is clean. No cancer cells!" It was a hallelujah time, for sure.

Monday, February 7, 2011

Monday, February 7th

Surely the wait is worse than the "know". Today Drew had his PET, CT scan, EKG, and Echo. We will know in a few days the results; whether the scans are still showing no active cancer cells. We wait literally on trembling knees. My mother's heart cries out, "Oh, God, please, please touch his body and heal him completely"; but, my spirit fights to yield my will to my Father's. Drew and I were talking some time back, and the subject came up of the cancer returning. He point-blank said to me, "Mama, if it comes back, I can't do this again." And, without a second's hesitation, I told him, "You can, Drew, and you will." My heart has smote me over and over again at the selfishness of my reply. The truth is, I don't know if I can ask him to endure any more pain; but I don't know if I can not ask him either. I know that my Redeemer liveth, and with all that is within me, I believe His great love for Drew, for us, will be the thread of hope to which we continue to cling.

Wednesday, January 5, 2011

Wednesday, January 5th

What a beautiful Christmas we had; so many beautiful memories and precious times. Drew is actually in-patient this week for what the doctors are hoping is his last round of chemotherapy. He is scheduled for a series of scans in 2 weeks to see where we are in this battle for Drew's life. Since March '10, when Drew was diagnosed with the Ewing's Sarcoma, our lives have been been crazy busy with hospital stays (every other week), doctor appointments, surgeries, and in-between all that, trying to keep our lives as normal as possible for the other kids. Tonight as I look around at what has been our "home away from home" for the past 10 months, I am excited to hope that perhaps we're at the end of the line for the days and days of unrelenting sickness for my sweet boy. But, there's a part of me that is saddened to think that we won't be seeing as often all the precious nurses and doctors at Florida Hospital that have made such a huge impact in our lives. God has been so good to us over the past year, and we praise His name for the provision He's provided---financial, spiritual, emotional. We thank Him for the wonderful, life-long friends we've made. We are grateful for each one that we've been privileged to talk to about the Savior. And, we rejoice that as we look back, we can see the mighty unseen Hand guiding and directing our steps; strengthening our hearts when we've been weak; encouraging our souls to continue to trust Him. I heard a song entitled, "How Can I Keep From Singing His Praise", and what a message! I am thankful for be a child of the King and know that I know that whatever tomorrow holds, we won't face it alone.