Were finally here!!!!!

On July 1st 2006, When Adelaine was just 2 years, 3 months and 3 days old, she was diagnosed with leukemia. Since that day she has been in treatment for 2 years, 2 months and 3 days. So, she has spent exactly one month more of her life not fighting Leukemia, than she has fighting it. Starting tomorrow we get to add more and more and more days to her life without that awful fight, and it’s going to be magnificent… PRAISE GOD!!!!!!!!!!!!!!!!!!!!!!!!!! When Adelaine asks about dying, (you have to remember that she has lost some of her friends to cancer which is very sad and very hard on her),I always tell Adelaine (from the movie Titanic), you are going to die an old lady warm in your bed. We have all prayed for God’s marvelous healing on our girl and now we can all claim it and own it. Adelaine has been completely and totally healed. We want ourselves, our family and our friends to embrace it, own it and accept it, Adelaine has been healed. If it weren’t for your prayers this very well may not have happened for her. How can we ever thank you enough for all the prayers, plus the support, love and understanding you have given to us. Thank you from the bottom of out hearts.

Tonight we are not feeling afraid of a relapse. Satin is not robbing our joy of a healed daughter. We used to pray over Adelaine, “Thank you God that Adelaine does not have cancer anymore”, and “Please God don’t let her ever have cancer again”. One day Adelaine looked up at me after I prayed that prayer and asked, “You mean Satin can give me cancer AGAIN?”… I no longer pray that second half anymore. I just thank God everyday that she has been healed. I guess we prayed that second half out of fear. I don’t want her to live in fear. Our loving God says, “Fear not, do not be afraid”, so we are going to listen! Thankfully, she is too little to understand the fears that naturally go along with a cancer diagnosis. Far be it from me to teach her about it either. She has been healed, period. End of story, but beginning of a whole new life…

Late this evening, we arrived at the Quantum House (Ronald McDonald house of West Palm). Tomorrow Adelaine will receive her last chemo via port and spinal injection! In fact tomorrow will be the very last day of EVER having her port accessed again!!!!!! We are ecstatic to say the least, and so is she! We did a little pre-celebration for the Labor Day weekend and took the children to Universal Studios and Islands of Adventure and also to Give Kids the World, in Orlando. Our family had a wonderful time including Daisy Dog (I think Adelaine’s “kitty” has officially been replaced)! Thank you Whitney for meeting us in Orlando and spending time with the children so Doug and I could go out on a much needed date! We love you, also, congrats on the engagement!!!!!!!!!!!

We thank everyone for the many, many prayers. Please remember Adelaine tomorrow as each and every time she is put to sleep and has these procedures, things can always go wrong. We are feeling very confident in the doctors who will be working on her tomorrow, praise God! When we were in Maine, we discovered from many other families that there is no protocol about how long a port should or shouldn’t be left in. It depends on the doctor’s preference. Some theorize that it should be left in 6 months or more incase of relapse. Some think that it should be taken out right away because of risk of blood clots and infection. WE BELIEVE THAT ADELAINE HAS BEEN HEALED, PRAISE GOD, so why should we leave her little body at any risk? Our doctor is on the same page with us and we feel great about getting it out!

Funny story… One of Adelaine’s favorite books is Madeline. She especially loves the one where Madeline (who lives in a boarding school) has to stay at the hospital to have her appendix taken out. Miss Clavel and the other 11 little girls come to visit her a few days later. They all walk into her hospital room and see all the wonderful toys and candy she’s gotten. Madeline stands on her bed, lifts up her shirt and proudly shows them all her scar. Madeline’s friends left and went home to go to bed. That night Miss Clavel turned on the light and said, “Something is not right”. She goes down stairs into the girls’ room and they are all crying. When she asks what is wrong, they reply, “We want our appendix out too”! Adelaine thinks that is the grandest story.

We have always doted over Adelaine’s port scar (another funny thing, the computer just corrected “port scar” to “sports car”), maybe that’s a sign!!!!! Anyway, she meets cancer survivors all the time and they all show off their scars, like badges of honor, rightfully so. Even after this encouragement and positive attention, she still wants it gone! To me it is her little badge of honor and courage. We’ve explained to her for over two years now, that when she turned four she would get her port out and start school. Oh yes, and let’s not forget her ear piercing! All these things are finally about to happen for her. She is on cloud nine!!!! She was looking in the mirror not long ago and asked, “When I get my port taken out, will my scarf be gone?” I asked her, “Why, do you want it to be gone”? I wanted to make sure she understood what she was asking. I explained that her port would be taken out, but that the scar is just a mark on her skin because of it. For some reason she was very distraught over having this mark permanently on her skin. So, very… very… very prematurely, we had our little talk about plastic surgeons, and the magic they can work!!!!! Her little eyes lit up!

Four weeks ago during our visit with Dr. Gowda, her oncologist, I expressed Adelaine’s interest in having a plastic surgeon sew her up once we remove her port. It seemed that most people don’t make such a request, but he gave us the number of a pediatric plastic surgeon who would probably take our insurance. Dr. Gowda said that he had no problem removing it on the same day as her last chemo if we could work it out with the surgeon. Believe it or not the plastic surgeon saw us that same day for a consultation and agreed to come to St. Mary’s hospital tomorrow and perform the surgery. In fact he will not just be sewing her up but removing her port as well. Adelaine has never asked for anything having to do with her cancer but has just accepted things as they come. This was her only request and I am so thankful God is working it out for her.

Another funny story… On our way to the “pediatric” plastic surgeons office, we had a nice talk with the boys about how great it could be if they were pediatric surgeons when they grew up. So many children’s’ lives could be touched and changed by their special skills. We really talked it up too! Once we walked into the office Doug and I IMMEDIATELY realized that this was not a plastic surgeon who serves only in pediatrics, if you know what I mean! We saw quite an assortment. Did I ask if they could through a little plastic surgery in for the mom as well? I’ll never tell!!!!!!
(Mom, I’m just kidding)!!!

Back to Adelaine, last week she took her very last five little pills of Methotrexate! Boy that felt really good. Tonight she had her very last meal with her port in (she can’t eat anything past midnight until after her surgery). Luckily Quantum House has a very fully stocked kitchen for just the occasion. Some angel brought in the best homemade hand- stuffed raviolis mmm mmmm, Adelaine loved it. She is sound asleep waiting for tomorrow to come, looking forward to having her port removed. (We didn’t exactly explain that she would be very sore and have to heal. We figured she’d find that all out soon enough and we should just let her enjoy the excitement)! I believe the port has been what she has hated the most about cancer. I asked her the other day if she remembers how sick she was last year. She replied, “No”. But she sure remembers how bad it hurts to have her port accessed every time. A very fat needle is stuck into her chest and I’m sure it feels like a bee sting. Maybe that’s why she dislikes her scar so much, in her mind it has somehow aided in being stabbed with those large needles. Oh, I forgot to mention, she did have one more request. She wants to sleep with her port ON THE NIGHTSTAND beside her bed tomorrow night! I talked to the plastic surgeon about this. He isn’t sure, it usually goes to some where (I can’t remember) to be examined and tested ect. She really wants to have it in her hands, so please pray that we can make this happen for her also. Even with this request, she still hasn’t asked for much!

Although tomorrow will be her last day of chemo and bye- bye port, she still will have to recover from the large doses of chemo she will be getting (as an adult, if we were to take the same doses of chemo given to children, it would most likely kill us), plus she will be on a week of steroids (oh joy) add to that recovery time from the plastic surgery and a very weakened immune system, we still have some mild, not sunny weather ahead of us. (Speaking of weather, let’s hope and pray that the hurricane doesn’t hit while we are here recovering)!!! I’m not sure when we will be leaving. All the procedures being done tomorrow are outpatient, but we can stay at the Quantum House as long as we need to. Apparently it will take 6 to 9 months for Adelaine’s immune system to be up and working at full capacity. (Doug is fighting off a bad cold or something right now, so please pray that none of us, especially Adelaine catches it).

I have been terrible about posting this summer, not to mention adding any pictures, but on the flip side, we’ve been having fun. So busy that instead of unpacking the car from the last trip, we just sort of didn’t bother. I’m washing the laundry from our suitcases so we will all have clean clothes to wear tomorrow!!!! It’s been crazy busy, but we’ve all been having a blast. I will definitely post tomorrow and let everyone know how it goes. Please pray that every single detail goes without a hitch and that Adelaine’s port ends up on her nightstand like she has dreamed of for such a long time, and that her scar is completely removed, and most of all remember to praise God for healing our baby girl.

We love you. We can never thank you enough for all you’ve done.

Angela

Like this post? Subscribe to my RSS feed and get loads more!

No comments yet

Leave a comment