Archive for December, 2006

It’s Christmas Eve, and the children are nearing the final countdown until Christmas. It looks as though we will all be together and home this Christmas. Inspite of Adelaine’s low blood counts, she seems to be doing just fine.

As we reflect on what Christmas really means, I suppose it doesn’t mater where we celebrate Christmas, but it will be nice to celebrate our Savior’s birthday at home with family and friends. Being home all together would be enough to make this a wonderful Christmas, but God had even more in store for us…

We wanted to share some of the blessings we have received from so many caring people. Doug and I are humbled and amazed by the outpouring of love everyone has shown. Just now we had people whom we’ve never met from a local church show up at our door with a huge present for the children. People have so lovingly been bringing us dinners, even during the busy holidays. Last week we had people from a church called 360 out of Sarasota, ask to meet with us. They literally loaded our SUV with presents! We’ve had packages with presents and baked goodies delivered to our door from friends as well as perfect strangers. Emails have come pouring in from people reaching out to us and sharing their stories, and some just to say that they’re praying for us. We’ve received checks and gift cards from locals and people across the US. We’ve had an outpouring from people from Bowen’s preschool and Mason’s school with cards, money, gift cards, and presents. People have made donations on Adelaine’s website. We’ve gotten prepaid gas cards, “Build a Bear Workshop” gift cards, and so much more. WOW!

With some of the money we received, we purchased a new camcorder! After Adelaine was diagnosed, it was so sad that we didn’t have any of her special moments caught on tape. We didn’t have a recording of her sweet voice and cute laugh. We are so excited that now we will be able to document the remainder of her treatment recovery as well as all three children’s childhood special moments.

People have been so loving and giving to us. We want to say thank you and express how on our knees and blown away we are from all of this. God has used so many people to personally touch our lives and make this Christmas a truly unforgettable one! How can we ever thank everyone enough? Words could never express how truly grateful we are. The love and support has brought so much sunshine in our lives during this very rainy season. We will be forever changed because of all the love we have received. God is AWESOME! Thanks for letting Him use you all in such a very special way.

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Here is the official list of all the meds Adelaine has had over these past 5 ½ months as a direct result of the diagnosis and treatment of her Leukemia. She was 2 years, and eight months old when she was diagnosed. We are now doing the official count down of when she will be done (approximately 2 years, 2 months and five days later). It’s actually a little less time than we originally anticipated.

Here it is:
• ACETAMINOPHEN – (Tylenol) – Pain Reliever.
• ALLOPURINOL – Lowers the body’s level of uric acid. When tumor cells break apart and die, they form crystals which may damage the kidneys.
• ALTEPLASE – A medicine that dissolves blood clots.
• ASPARAGINASE – PEG – A chemotherapy drug which is injected into the muscle.
• BUPIVACAINE .25% – A spinal analgesia used to numb the area during an injection for chemotherapy.
• CEFAZOLIN – An antibiotic used to fight bacteria in the body.
• CEFEPIME – A broad-spectrum parenteral cephalosporin antibiotic.
• CHERRY SYRUP – Flavors meds!
• CODEINE SULFATE – A narcotic analgesic.
• CYCLOPHOSPHAMIDE – Used to treat some diseases characterized by abnormal immune function.
• CYTARABINE 43 MG CHEMO IV – ( Referred to as Ara-C) – A chemotherapy drug given into the vain or spinal fluid.
• D5W-0.45NACL+20MEQ K – I have no earthly idea!
• D5%W-0.22%NACL – Same as above!
• D5%W-0.45%NACL – Your guess is as good as mine!
• DEXAMETHASONE – A hormone similar to hormones made in the body that may kill some cancer cells and increase effectiveness of other anti-cancer medications.
• DiphenhydrAMINE – (Benadryl) – Normally an antihistamine used to treat respiratory and allergic symptoms, but is sometimes used to treat nausea during chemotherapy.
• DOXOrubicin – (Known as the Red Devil) – This drug is so powerful it may turn the urine red, it did Adelaine’s! If she’d had hair, we would have looked for horns!
• EMLA CREAM – A topical numbing cream. (Adelaine refuses to use it!)
• EPInephrine – A hormone used as a cardiac stimulant, systemic anti-allergic and topical anti-glaucoma agent.
• FENTANYL – A narcotic analgesia used in combination with other drugs before, during, or following surgery and also for chronic pain management.
• FILGRASTIM (GCSF) – Used to stimulate the bone marrow to increase production of neutrophils.
• FLUCONAZOLE – (Diflucan) – A medicine to help prevent and treat fungal infections.
• GLYCOPYRROLATE – A pre-medication to anesthesia which reduces salivary, tracheoboncial and pharyngeal secretions.
• HEPARIN Used to prevent platelet agglutination and blood clotting.
• HEPARIN FLUSH – A liquid injected into her port to prevent blood clots.
• HYDROCORTISONE SS – A steroid hormone secreted by the adrenal cortex.
• IT CHEMO IN NS- Intrathecal Chemo – Chemo that is inserted through a needle injected into the spine.
• IV FAT EMULSION 20% – Fat given through an IV for additional calories.
• LACTULOSE – A synthetic sugar used to treat constipation.
• LEUKEMIC-N MOUTHWASH – A mouth rinse containing which work together to numb the mouth and throat.
• LIDOCAINE VISCOUS 2% – A local anesthetic which creates a numbing effect.
• LORAZEPAN – (Ativan) – Relieves anxiety, nervousness and tension also used to treat nausea.
• MADAZOLAM – A broad spectrum antifungal agent.
• MERCAPTOPURINE (Known as 6-MP) – An anti-cancer chemotherapy drug which is taken orally.
• METHOTREXATE – A chemotherapy drug which is taken orally or intrathecally (injected into the spinal cord).
• METRONIDAZOLE – An antibiotic drug effective against anaerobic bacteria.
• MILK OF MAGNESIA – Treats constipation.
• MIRALAX – A laxative used to treat constipation.
• MUPIROCIN 2% OINTMENT – A topical antibacterial ointment.
• NYSTATIN – An antifungal medication.
• ONDANSETRON – (Known as Zofran) – A medicine to help prevent nausea and vomiting during chemotherapy therapy.
• PROPOFOL – A short-acting anesthetic agent used for the induction of general anesthesia.
• RANITIDINE – A histamine that inhibits stomach acid production
• SEPTRA – An oral broad spectrum antibiotic.
• SODIUM BICARBONATE – Used to protect the kidneys.
• SODIUM CHLORIDE 0.9% – Given during chemotherapy for low sodium.
• THIOGUANINE – A drug used in the treatment of cancer by inducing cell cycle arrest and apoptosis.
• TPN less than 2001ML – (Total parenteral nutrition) – Resting the stomach by feeding through an IV tube into the bloodstream.
• VINCRISTINE – A clear liquid chemotherapy drug inserted directly into the vein.
• ZINC OXIDE OINTMENT – Used to treat diaper rash. Appropriately enough, The End!

Not bad for a little girl who was breast fed for the first 1 ½ years of her life, and who had never taken antibiotics until two days before she was diagnosed! Oh yea, this does not include any extra drugs she may have gotten while she was in the hospital. Those are going to be added soon!

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Since Adelaine’s blood infusion, she is back on her feet again, and with a little extra pep in her step!!! We just got our “Get Your Life Back Date” September 5, 2008! This will be the very last day of her treatments for Leukemia. This may seem like a long way off, but to us it’s like a bright light in the darkness. We can officially see the light a t the end of the tunnel! Adelaine’s saying is,”I can’t do this forever”. She says this ALL THE TIME. Yesterday, when she said it, I told her the date and that she would be 4 ½ years old and all her treatments would stop. She lit up like she knew exactly what I was talking about, and then she said, “Tomorrow I will be six!”

Christmas night she will take her last 6TP (Chemo). Then she will have two weeks off from all her treatments.

Next to follow will be the Maintenance Phase of her treatments. This means that she will be on a twelve week schedule which will repeat itself throughout the course of the next two years. She will get Chemo that is familiar to us and we can better plan because we will have the entire schedule mapped out in front of us!

After Christmas the worst will be behind us in a lot of ways. She still will be getting daily treatments which will keep her immune-suppressed and carry with it all negative, potentially life-threatening, long term effects that these treatments bring to the table. She still will have hospital stays, clinical visits, procedures done in the operating room, and endure many more pokes and “sticky prickies.” So please keep praying. We got good news but we still have a long journey ahead of us.

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is that Kramer's blood

is that Kramer's blood

This past weekend was packed full for us all. Saturday was the tea party and Sunday was the American Cancer Society Christmas party at the Vinoy Hotel. There is something so special and touching about gathering around these families. It’s like being surrounded by angels, and to be honest with you I’m quite certain that we were. It was great reuniting with several different families that we had gotten to know during our Disney trip. The Mayhew’s were there with Peyton, which is always a blast. This unbelievable performer sang,” All I Want for Christmas is You”! It was so beautiful. I was able to compose myself at the time, but now when I hear it on the radio I completely loose it!

Adelaine certainly had a great weekend. But by Sunday night poor Adelaine was exhausted and didn’t seem herself. This new chemo had really started to take its toll on her. We took it really easy on Monday trying to let her rest up.

By this morning Adelaine was looking really pale and her lips were bluish-white.
She was sleeping a lot, I contributed it to the busy weekend and the lack of sleep she’d suffered due to the steroids.

Our appointment for Clinic was this morning. She is scheduled to go every day this week starting today for chemo injections. Everyone at the Christmas party told me how terrible this part of the treatment was for them. Adelaine was doing so well, I was really hoping that she’d not have any real issues with it.

Unfortunately, at our visit today her blood counts came back really low, so she got her chemo treatment, and a blood infusion. Adelaine has made it all this way without having to have any additional infusions. She had two in July when she was first diagnosed. There’s something about putting someone else’s blood into you child that is a little freaky.

I try really hard not to worry about all the things that can potentially go wrong. All day I tried to focus on how God made the blood that went into my child and He can purify it if somehow the scientists and machines missed something.

I must say that after her infusion, she perked right up! Her skin is peachy and her lips are red. She was hysterical (in the good way) at dinner and has started eating again. I suppose that instead of doing all this worrying about the blood, I should just be grateful for the nice person that donated it!!!!!

Wednesday, December 20, 2006, 01:36 AM

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The Best Day Ever!

best day ever as a cancer patient

best day ever as a cancer patient

It’s been five days since Adelaine was in the hospital. She still has one more week of heavy chemo to go. In spite of it all, Adelaine is feeling GREAT today! The day started with her guys soccer game. After an afternoon nap, it was tea time!! Adelaine went to her second annual tea party with her friend Ashley.

When Adelaine was first diagnosed, and the doctor announced to us that she had leukemia, the very first thing I thought of was our tea party we had last Christmas. Of all the fun things we’ve done together, that tea party just came to my mind. All her life experiences in those two short years suddenly meant everything in the world to me. Those memories, that time, we would never get back. Oh how thankful I was that I made the time that I did with her. That tea party represented to me what having a little girl was all about…

So, now we have lots of tea parties!!! It’s amazing how a little two year old can munch on cookies, sip from fine china (with out breaking it), place a napkin in her lap, and laugh and enjoy life to the fullest. She seems to enjoy this time together as much as I do.

However, after experiencing this tea party we are probably going to have to step it up a notch…

Bilss La Tea Da tea room is made special for little girls and their tea parties! First, the girls had their makeup done, and their nails painted. After that they dressed up with all sorts of beautiful hats and boas to choose from. Ashley also chose to wear a La Tea Da party dress! Then it was tea time. Tea time included sipping pink lemonade, and eating lots of goodies. The cookie cutter cut peanut butter & jelly sandwiches had pink and blue sprinkles on them. They were served with a platter of gold fish, topped with different types of marshmallows and jelly beans and other delicious yummies. They also had pastries and scones. A real delight for a little girl, I must say.

I must also mention that among the large white marshmallows, which by the way, Ashley proceeded to stuff a whole one in her mouth. For some reason little ones seem to think that if it tastes good it would taste even better if they have a giant mouth full. The question is what then????

Anyway, among large fluffy marshmallows were the little colored mini-marshmallows. Now, this is interesting because Adelaine usually eats a couple of these after she takes her chemo. They really help to take the bad taste away. So, there they were, a little reminder sitting right on the table. At home she really seems thankful for those fruity bites of fluff. So, I decided to place a few on her plate just to see. She very politely placed them back on the tray!

If I must make a deeper meaning of those mini’s, I think they were there as a little reminder. A little reminder of just how precious her little life is, a reminder of what all we’ve been through and how far we’ve come.

In the early days, I tried to keep the cancer in a box. But now I realize that it doesn’t quite work that way. Adelaine’s illness affects us in some way no matter where we are or what we’re doing. Its always there with us. I’m learning to be ok with that because I believe with all my heart that God is doing and will do great things in His Kingdom because of this, and what other choice do we have?!

Instead of just trying to get through the next 2 ½ years of treatments, I hope that we remember not to over look all the blessings that are happening in our midst.

Today was honestly the best day that Adelaine and I have ever had together. She has been through so much, and it makes me even more thankful for this wonderful day we’ve had!!

Check out her La Tea Da pictures on the gallery.


Saturday, December 16, 2006, 07:45 PM

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