Archive for September, 2008

We had a very victorious day today! It was a long 7 hours, but here we are and things went better than we could have ever imagined. This morning Adelaine and I were up and out the door at 8:30am. Because Quantum House is located on St. Mary’s Hospital campus, we can just call the hospital taxi to pick us up. It was a great way to start the day. At the clinic, a Child Life Specialist, Teresa, from Connor Moran Children’s Cancer Foundation, was there greeting Adelaine with lots of love, smiles, and arts and crafts. She and Adelaine instantly bonded. Teresa and I were talking about Adelaine and her treatments and I mentioned how impressed we were to see that the doctors here support their patients in nutrition and even taking Mona Vie. Teresa said, “Oh yes we even have a program where the children can take Mona Vie for free!” I literally had to pull my chin up off the floor. I was so encouraged. It was like I was drinking hot chocolate as I heard her words (a healthy cup of hot chocolate)! I wish every child could have the same opportunity to Mona Vie that Adelaine has had, and it looks as though they can. Fred, you really did change our lives by introducing us to the black pearl of the Brazilian rain forest! Thank you.

After a cozy visit and some creative time, we were called back to a room. Adelaine’s counts had been at a poor 700 all month long. But not today, they came back at 2,508, which is very, very good! Then we got more good news, they explained that because this is her last day of treatment, she would not be getting any chemo! No Vinchristine, (which lingers badly in her system for about 5 days) no steroids (which make her extremely moody and depressed), no Methotrexate spinal injection (this procedure really freaks us out). All they wanted to do was pull bone marrow and spinal fluid to check for irregular (leukemic) cells. I was shocked. Today instead of filling her little body full of poison, we really are done! Can you believe it?

To top that off, they did not access her port. Last month was the last time she would ever get her port accessed and we didn’t even realize it. How amazing!!! They pricked her finger and tested her blood then brought in gifts to celebrate her last day of “treatment”! Who knew? The hospital Child Life Specialist also came to meet with us to offer her support. It felt like angels were all around us practically carrying us through this last day.

Next they took us to outpatient and put in a pick line into Adelaine’s hand so she could be put to sleep. She was very upset and realized then that this was not completely a “birthday party and cake” kind of day! I crawled into the bed with her and they wheeled us across the hospital to the OR, with Doug and the boys in tow. Adelaine cried the whole way. We met with the anesthesiologist and the plastic surgeon and everything was set. Adelaine remained quite miserable and apprehensive during all of that part. Finally she got what they called “giggle juice” through her IV and she was much calmer. The hospital, the oncologist and the plastic surgeon all agreed to let Adelaine have her port for keeps! It IS on the nightstand, by her bed, just like she had hoped for, planned for and counted on for such a very long time!!! Praise God!

Her plastic surgeon came and told us how well everything went. It sounded like she has been stitched, stapled, glued, taped, tied, fastened and bound tightly together!!! He said she could run and play and carry on as usual and tomorrow she can even shower. After she woke up, she said, “Did I get my port out?” I said, “Yes, would you like to see it?” She said, “Yes”. I showed it to her then I asked if she’d like to hold it and she replied firmly, “NO”! It seemed that she just wanted confirmation and proof that it was out! I think she will have a love hate relationship with it at least for a while. Her port has served as her life line for the past 2 plus years, so it’s been an important part of her life, our lives.

When I held her port in my hand today I felt such victory, like an Olympian clinging to a gold medal. I imagined Adelaine walking down the aisle on her wedding day caring her “something old”, gripping her port with nervous anticipation about her big day. Her next question was, “Is my scarf (scar) gone?” I had to explain that first it had to heal, and then it will be gone. She wanted to know how long it would take. She asked, “100 days, then will it be gone?” I answered, “Yes”, and then she started to cry “a 100 days, that is a long time!” I finally calmed her down and explained that it would be only a few weeks. She accepted that answer and hasn’t complained about it again. In fact, she does not seem to be bothered by the incision one bit, no pain, no soreness, nothing. She doesn’t even seem to mind the tape. WOW!!!

The next words were, and I quote, “Why do I have on this awful gown?” They snuck on her hospital gown after she went to sleep because princesses do not wear hospital gowns you know. We changed her clothes. Next on her mind was her food. She already downed a cherry popsicle, and was then able to eat her famous after procedure meal of pizza, mashed potatoes, and Jell-O and apple juice. Next, she wanted to call Dana, her big sister from the Children’s Cancer Center. We tried, but got no phone reception from the recovery room. She couldn’t wait to tell Dana the good news. Dana, you have been a rock for Adelaine and your beating cancer has helped pave the road for her. We all love you! Thank you for your fight so we could have the opportunity of knowing you. You are awesome!

While we were waiting for 4:00pm to arrive, the precise time Adelaine would be discharged, I got a phone call from the clinic, at the nurse’s desk. The lady on the line hesitated and paused as she cleared her throat. My blood ran cold. I thought maybe she was mustering up the courage to tell me something awful about Adelaine’s spinal fluid / bone marrow results. Anyway, it turned out that she just had a tickle in her throat. She was calling to tell me that they heard Adelaine drinks Mona Vie and that they had a bottle there for us to pick up!!!! What a perfect ending to a perfect day I thought! By the way, if Adelaine would not have had that relapse scare a few months ago, they would not have pulled any bone marrow during that time. Because it was “as clear as a bell” a few months ago, we were able to go ahead and have her port taken out today. So, even though it was a hellish experience, it paid off today

So what’s next? In about a month we will return to West Palm so the plastic surgeon can take a look at her incision. Until then, she will not need any stitches removed as originally thought. Then, next year (that feels good to say), January 8th, 2009, Adelaine will come back here to see her oncologist to have a sample of her spinal fluid taken. She will then have it performed 2 more times, four months apart and then never again! She will need her blood checked monthly for the first year via finger poke, every two months the second year, then every three months the third year and so on . Not too bad at all, we can do this!

As for Miss Adelaine, she is in much better shape tonight than we could have ever imagined. No chemo, no steroids, her port removal is like it never happened. She is sleeping soundly at the wonderful Quantum Inn (Quantum House) with her two guys in their king-sized bed, along with her “kitty” and Daisy dog. On the night stand is her “juicy cup” and beside it is her port! Live is good, life is really good! We need to pop the lid off that bottle of Mona Vie and celebrate!

Next on Adelaine’s agenda, tomorrow we will hit “Toys R Us” to get her the Barbie Flying Magic Pegasus she’s been eyeing. We’d been singing all morning, “Today is my special day”, but I guess tomorrow is too! Soon, very soon she will have her dream of getting her ears pierced. She asks every week if we can take her to the mall and have them done. I’m not sure how much longer we can hold her off! She is such a girlie girl. A few days ago while the boys were at school we were riding around doing errands. She made a request from the back seat, “Hey Mom, let’s go do some girl stuff!” I was afraid to ask, my mind immediately flashed back to the little talk we had about plastic surgeons and the magic they can do. It was quite an amusing thought! Anyway she suggested that we both get our nails done. It’s comical to me that nowadays a four year old knows that there is this special place where girls go just to get their nails done. I know, I know, she learned it from me, and I taught her that no boys are allowed! I told her maybe on our birthdays we can go do something special like that together. Now if she would have suggested getting a double massage, that would have been completely different!!!

More good stuff, she will be starting Pre-K very soon too. Then there is still the baby sister! The timing has not clicked yet, and we are still learning to be patient and wait on God. I believe that “she” is just not ready or available to join us yet. Gods timing is perfect, so we trust that. Anyway we’ve been talking and deciding on how old, how many, just one girl, or two, twins maybe, a girl and a boy, two girls, five girls, ect. We wouldn’t really take in a whole slew of children, we already have that, but it was fun just talking about it. Many will be pleased to know that we’ve decided on just one little girl. As much as I would love to go to the hospital and bring home a newborn that needs a home, I’m not sure that would be the best thing for our family. We love having all of our children 2 years apart, so a two year old little girl seems perfect.

Today we met a lovely couple who just gave birth to triplets, three boys, Tyler, Conner and Aiden! The mom asked if I would like to come along and help her and her husband feed their little preemies. I joyfully obliged. I’m sure Doug thought, “I hope getting pregnant with triplets is not contagious!” I guess he wasn’t too concerned, he agreed to let me go. They were sweet and beautiful. I heard about a tiny baby girl on oxygen who has been here for over two months. Her mother dropped her off and has never been back. The tiny baby hasn’t had any visitors. Of course I asked if I could go and hold her, but they wouldn’t let me. Another little girl was in a high chair in the hallway screaming her head off. She looked about 2 years old. I could tell even through the hysteria that she was crying for her mother. It turns out that her single mom has five other young children and couldn’t be there with this sick little girl who has pneumonia. My heart broke.

I know that Adelaine has been blessed. Blessed to have been born into a family that love her and can take care of her, blessed that she has so many people that love her and pray for her, some daily, blessed that she has battled and won this fight against cancer, blessed to know Jesus and to have Him battling with her, for her. But I know that God has kept her here so she can be a blessing to others. She is an amazing girl who has literally walked through the valley of the shadow of death, yet she is un scathed by it.

In the next few weeks Adelaine will see a therapist to evaluate the negative effects that fighting cancer may have had on her. It is routine to have this done so that teachers can be made aware of any special needs these children may have. These children have certain legal rights after taking chemo, such as longer test times if needed. Chemo can cause so many problems with memory, fine motor skills, cognitive development, ect. As far as we can tell, Adelaine seems to have NO negative effects from her fight against cancer! That in itself is a miracle and we believe a direct result of answered prayers. We firmly believe that you all helped heal our daughter by crying out to God on her behalf. Adelaine is quite smart, personable, loving, and outgoing (more like daring). Doug and I were talking about it last week, as we are approaching her evaluation. He said, “Can you just imagine how smart she would have been if she wouldn’t have taken any chemo”? We both paused to think about that for a minute and about the same time realized that, “No, she wouldn’t have been any smarter, God has just protected her body from all those toxic poisons”!

I remember back to when she was first diagnosed. I cried out to one of my best friends how my little girl is gone and I will never have her back. My friend argued that she would be back, treatment wouldn’t last forever. True, but she would be two years older not my little toddler anymore. With all the heavy chemo and steroids, her personality was so withdrawn that she literally seemed lost within herself. She was sad, depressed and in so much pain. My heart was crushed. She also looked so different, the huge weight gain during that long duration of heavy steroids and that bald head, pale face and dark circles. I remember as one day I was stepping out of the shower and she was standing there, I did not even recognize my own child. It was so surreal. I thought, “My Adelaine was gone forever and whoever this child is and would turn out to be, would never be the same”. I mourned that loss for many months to come.

But guess what, that little girl is BACK! She is everything I thought we had lost and then some. I used to wonder, “Would she be as smart?” (Yes, one million hours of Barney did pay off). “Would she ever be as beautiful?” (We all know how that one turned out)! “Would she still be as loving and thoughtful?” (She sure wasn’t that way on steroids)! “Would she be as courageous and outgoing?” (I feared she would remain shy, timid, withdrawn and fearful from having perfect strangers inflict pain on her). “Would she have the same coordination?” (I didn’t realize two special girls were about to enter her life. With Dana and Ajulia’s influence, she’s as agile as a cat)! “Could she even be as healthy?” (With Mona Vie, Juice Plus, fresh organic fruits and veggies I believe our whole family will be). Those questions that would keep my up at night have finally all been answered. The answer is, “Yes” she would be all those things and more. Somehow this enormous battle that is so much larger than ourselves has left our little girl, and left her unscathed. In fact, I’d even go as far to say that it has probably helped accentuate every aspect of her life. WOW! Did I just say that? But how, how could she come out of all this like a beautiful pink rose, completely untouched by anything impure? I have the answer to that to…

God! He answered OUR prayers, YOURS and MINE. He protected her. He blessed her. He gave her extra gifts because of her cancer. If you ever meet a child who has ever been inflicted with cancer, you can immediately see the extra gifts God gives to them. It’s just amazing! If you ever wonder if God is real, if miracles ever happen or if they still happen today, just look at Adelaine. You will have your answer. This is her gift to us!

Please pray that God will plant a hedge around our precious flower. That He will protect her, guide her and continue to bring very special people into her life. That she will use all her extra special gifts and talents to bless and serve him. Please continue to praise God every day for her healing.

God is Love!

PS Pictures coming soon!

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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

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