Archive for February, 2007

We had such an amazing weekend, but Sunday night, it ended with the tragic news of Delaney. She died suddenly on Saturday night. Just 3 days before, we all spent the evening with her at the Children’s Cancer Center. She was the cutest little girl with extraordinary character and personality. She passed out pictures she had made to everyone that evening. She handed me one and then I got to spend time talking with her. I told her how great she looked and asked if she was feeling good. She replied, “I feel great and I am never going to be sick again”! I gave her a high five and we rejoiced over her newly found good health. She had just recently been completely cured of her cancer which she had been fighting for three years. It was like she was able to say “goodbye” to all of us that night by passing out her art work. All our hearts are broken and this precious angel will be terribly missed. Please pray for her family.

On Tuesday morning we all gathered at the center to make Cancer ribbons to pass out at the funeral on Friday, in Delaney’s honor. Her favorite color was red, so the ribbons will be red and gold (gold for childhood cancer). On Saturday I will be speaking ont the CCC and what it has meant to our family. It is a great honor and privilege to be able to do this. The staff and volunteers are such an amazing group of people. They love these children whole-heartedly. Even knowing that there will be occasions where they are going to have their hearts torn apart, they continue to love. They do not put up a shield to protect themselves from getting hurt, but love completely and selflessly to each and every single child. They are truly like family to us. I can not think of any place in the world I’d rather be than at the center with such wonderful people who love and support and understand. They have gotten to know Delaney so well over these past three years. They truly loved her and spent many, many quality hours with her. I know Kara and her family are so grateful for the center and that Delaney had such a loving, fun place to come to which made a significant difference in her life. Please pray for them also, they are hurting so much over this loss.

I haven’t been able to post since we found out, but I would like to share about Adelaine. We took her to the clinic on Monday and she got the nasty chemo, Vinchristine in her port. She also started her 5 days of steroids again. Her counts were at a very low 200! We are supposed to be quarantined, but that’s no fun. We went to the center anyway!!! She is more than ½ way through her antibiotics which she is taking twice a day for 21 days for her massive sinus infection. They said during her appointment that her ears look great. This time there was absolutely NO bleeding after her surgery of having tubes put in. We were amazed and so thankful!

Funny story…

After 10 days of her antibiotics, we had to get a refill for the remaining 11 days. Last Thursday after we left CCC, I stopped by CVS and picked them up. Once we got home I gave them to Adelaine and rushed around getting everyone ready for bed. The next morning there they were still on the counter where I’d left them. This was a giant oops because they had to be refrigerated. I wasn’t sure how much this little mistake was going to cost us, but I knew it was not going to be cheap!! I called the pharmacist and explained what had happened and he said to bring the bottle in and he would just exchange it. Wasn’t that nice of him!!! So I exchanged them and came home. Guess what happened the next morning? No, I didn’t forget and leave them out again, but I did spill the entire bottle because the syringe popped apart while I was measuring it out! The bottle went flying and I did get a very hefty does of antibiotics all in my hair before the bottle hit the floor. I told Doug that there is no way they are going to believe that I have managed to destroy yet another bottle of antibiotics two days in a row!!!! He’s going to think I’m either supplying it whole family or I’m out selling it on the black market! But I mustered up the nerve and called to explain to him what had happened…AGAIN! Once again he agreed to exchange out the bottle for a new one. Thus far we’ve had no more incidences with the antibiotics, but we do still have 6 more days left, so we’ll see!!!!

I am still planning to post about our exciting weekend we had, but I just can’t seem to be able to do it right now. Hopefully tomorrow! Have a wonderful day and kiss someone you love!!!


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Oh my!

Doug picked roses for me and Adelaine a few days ago. Yesterday, when I went home to be with the boys, there were rose petals covering Adelaine’s meds. It was like a little sign from God saying,”Don’t worry I’m here in all this”!

Unfortunately All Children’s has welcomed us back. Friday we drove to Orlando and had the pleasure of visiting with our good friends from Georgia, who were here with their three boys visiting Mickey! That short but very sweet visit seemed to have come with a price!

Saturday Adelaine’s ear started hurting again and her fever went up to 103. The boys were all having fun at Tropicana Field Fan Fest for the Bucks while Adelaine was getting sick again. By the time they returned, it was time to check back in!

Saturday night Adelaine continued to get worse. Despite the fact that she has a pretty high pain tolerance, the pain was just unbearable. They tried giving her Codeine, which didn’t even touch it. Next came the Morphine which did the trick. She slept like a baby, but now seems to have her days and nights mixed up which is the least of our worries…

We had a triple dental appointment today for all the children, which we made a few months ago. My idea was to ask to check her out and bring her right back, but because she was still running fever as of last night I new better than to ask. How do you cancel a triple appointment at the last second? Would they ever let you book such a convenient appointment again? I didn’t want to find out so Doug took the boys, which hopefully turned into fun “guy time”. In the mean time Adelaine’s teeth, which we are a little concerned about are again the least of our worries…

This morning the doctor came in and announced that Adelaine’s blood culture grew bacteria,Haemophilus to be exact. This is why these children who are immune compromised must come in immediately with the first sign of fever, if left untreated it is absolutely life threatening. Their immune systems just do not have what it takes to fight off bacterial infections, and it can go into their blood stream. So something that was supposed to be an ear infection that didn’t quite go away from last weeks stay has turned into something worse. What does this mean for Adelaine? Two weeks of intravenous antibiotics. She won’t have to stay in the hospital for the entire two weeks, but she will have to be set up at home with an antibiotic drip and have in home health care. Her port will remain accessed for these two weeks in which to receive meds. This maintenance phase of treatment has just been a walk in the park so far, hasn’t it!!!

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Meet G.I. Laine…

Meet G.I. Laine…

“Because Tough Times Don’t Last, Tough People Do”!

Laine battles both things seen and unseen on the spiritual and physical realms. For her struggles are not flesh against blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Ephesians 6 11-12. Laine is tough, Laine is determined, Laine is a warrior! Everyday as she approaches the front lines, she puts on the full armor or God. She stands firm with the belt of truth buckled around her waist, with the breastplate of righteousness in place, and with her feet fitted with the readiness that comes form the gospel of peace. She takes up the shield of faith, with which she can extinguish all the flaming arrows of the evil one. She wears the helmet of salvation and the sword of the spirit. She is alert and always keeps on praying. Ephesians 14–18. In the end she will have tackled and defeated this monstrous beast and we will all celebrate over her victory.

“Thank You Jesus, I’m Alive!”

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On Monday evening we were released from the hospital. As of yesterday Adelaine is feeling good again. Five million loads of laundry later and things are back to normal, more or less. We have the windows open and fresh sea air is blowing in, ah home sweet home! It is wonderful having all the little ducklings under one roof and tucked away safely in their beds at night, well at least part of the time. The boys do have to go to school and Adelaine hasn’t slept through the entire night since July! While we were away, Doug was sick also, so we couldn’t trade off as we usually do. The short visits with the guys at the hospital were hard on the entire family, especially Bowen. Adelaine did adjust really nicely for the first time, to being at the hospital. In fact, when we were leaving she said she didn’t want to! R&R, room service, complete control over the remote and her mom’s undivided attention, who can blame her, right! She is happier here at home though, just ask her guys!

Something interesting has happened since we’ve returned. Adelaine was called a, “Little Fellow” at the pet shop on Tuesday. She was wearing a pink shirt! Yesterday someone smiled fondly at me and said, “Awe, three boys”! An interesting change from the usual, “Has your daughter been sick?” So these turn of events inspired me (and Bowen) to dress her up like a boy, just for one afternoon. Plus we wanted to get some “tough” pictures for our G.I. Laine posting. Adelaine was all for it. For the record, Mason thought this was strange and a Bad idea!

It was kind of like having a day of what could have been, WHAT REALLY COULD HAVE BEEN! Statistically, after having two boys a third was most likely to follow. Thankfully we did get our girl! Anyway, we dressed her up and off we went to the park. Adelaine whipped some three year old boy at soccer. His parents were quite impressed. I didn’t have the heart to tell them that, well you know!! The explanation would have taken forever, plus they probably would have grabbed their kid and ran! Some people did look at us rather strangely when we kept referring to “him” as “Sissy”! By the end of our little outing, Mason said, “Hey, this boy thing is really working, people really think she’s a boy!” Having another “boy” for a few hours was interesting, but we wouldn’t trade our Adelaine for anything in the world!

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It’s Saturday night and Adelaine is still at the hospital. It looks like the earliest we could leave is on Monday. She has to be fever free for at least 24 hours, which rules out tomorrow. The guys have been coming to visit everyday and are having fun sleeping in their tent. To mix it up a little more, Doug is feeling under the weather himself. So the boys are enjoying a very healthy weekend of Nintendo, movies and cartoons. Yes a weekend of stretching their imagination and creating curiosity which is sure to leave a lasting impression on their young, growing minds!!!!

Apparently it’s freezing outside and laundry is piling up, so Adelaine must have thought I would need a little weekend “get away”! Really the only thing to do here is work on the computer and order room service. So, to top off the double amount of chocolate on Valentines Day, we’ve been continuously munching since we’ve been here!

Yesterday I did have the opportunity to meet with the head Oncologist. He reviewed Adelaine’s files and we discussed how the past few visits at the clinic have gone and how she has been doing. He was very reassuring that overall everything is on track and not to worry. Her counts have been low because she’s been fighting off this and other viruses. Its all part of it, they will be good for a while then drop and be not so good for a while. We had just been really lucky before when they were so good for so long. Also, when counts are too high, they would have to increase the 6MP because it would mean that the treatments weren’t strong enough. All around we are feeling much better about how Adelaine’s treatments are going.

Its really difficult to get a mental grasp on all this. These harsh drugs keep these kids down and supressed and finally the toll they’ve taken on Adelaine is really beginning to show. Doug and I are realizing that unfortunately these treatments are going to be rough and there is no getting around it. Its normal, its expected and we need to settle in with it. We were doing ok until all the ”what ifs” were brought to the table. “The cause for her low counts could be from Parvo, or a genetic issue with 6MP, or some other serious setback or worse, a relapse”. The tests came back with reassuring news and there wasn’t a real reason to test for a relapse, so all this really is just part of it. Although we are stuck here in the hospital we do have lots to be thankful for.

More good news is that Adelaine has settled into being here a lot better than before. It used to be that every five minutes she would plead to go home. I explained to her that we would be here a few days and wouldn’t be leaving until she was all better. She seems to have accepted that. Our nurses here have been nothing less than phenomenal! We’ve had the same ones since we’ve been here. Adelaine is quite the charmer and they really seem to have been taken by her. One of her nurses shared with us that her best friend was diagnosed with Leukemia when she was about Adelaine’s age. They were friends even during that time. Now twenty something years later she is still cancer free and they are still best friends. It was just the testimony we needed to hear especially after the rollercoaster ride we’ve been on these past few weeks! God has really used her to help reassure us.

While we’ve been here, Adelaine has had a terrible case of “Hot Mouth”, so it’s definitely more than just steroids that are causing her to have emergency thirst! Also, she has potty trained herself once again. How is it that every time we’re here she does this? At home, she does ok until we go back on steroids, then she drinks so much it’s like her little bladder can’t keep up or something! Here, she receives a constant flow of fluids, so she has to go every five minutes. But unlike at home, she insists on going potty “like a big girl”. I guess I should add this to our list of things we do here! The only thing I can figure is that since there is about fifty or so people here who are getting paid to clean up after her, its just not as much fun to have an accident!

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