iu97alum
DIS Veteran
- Joined
- Jun 25, 2007
So I finally have time to sit down and start our PTR. Grab a nice drink 
and some popcorn 
and make yourself comfortable. 
Cast:
Me - Dana; Obessive planner; Loves anything Disney and who talked DH into letting me submit DD1 for Make A Wish
DH - Jim; SAHD extrodinare. My rock and love of my life.
DD1 - Emily (aka Emy), age 5, the wish Princess
who simply amazes me each day
DD2 - Samantha (aka Sami); age 3, our Entertainer. Life of the party
Nana -Marilyn - Our saving grace, helpful hand and all around wonderful MIL to me.
Heres a little background on us. I got pregnant, had a WONDERFUL pregnancy cept for a little heartburn here and there. DD1 turned a year old and 1 month and BAM pregnant with #2. Life was humming along for us quite well. Happy as can be!
Fast forward to 2007 Emily started preschool and was so excited. Unfortunately she had an unusually HIGH fever (Im talking 105 here folks!!!)
and we figured it was strep and hauled both girls off to the last appointment of the day to their pediatrician, figuring if one gets it, so will the other. Pedi says, it could be urinary tract infection (happens often to little girls who start school and um, well, dont do so well with potty time at school). She feels around her tummy and then tells us to go next door do have an ultrasound done. DD2, the ansty pants child, wont sit still so I take Emily into the u/s room while DH has the Entertainer (aka Sami) walking the halls of the hospital. U/S tech scans Emily and when finished says there is a mass on her kidney. 
Not sure what to think but know Im not good with details on medical stuff franticly try to get DH into the room so when the radiologist comes in to give details that hell be there. (Crappy cell phone coverage at the hospital, figures right)? He made it in time and radiologist says its a TUMOR, more than likely Wilms. Is that cancerous, I ask? Yes. But I still hold out hope that its benign and we head back over to the peditircians office. We are put in room and the peditirican comes in with a box of tissues and CRYING. 
(You know its bad news when your DOCTOR is crying
) 
She explains that Emily has a mass on her kidney and that its proably a Wilms Tumor. Tells us to pack our bags and head to Childrens Medical Center because shell proably have surgery tonight to remove the mass. Say WHAT? 
DH cant even speak at this point so I need to find someone to come and watch DD#2 so that DH and I can BOTH go to the hospital. Understand, we have NO family in town so we had to rely on friends for help.
Luckily we have a great friend who just turned around (it was after 6PM by this time) and headed over to our house to take care of Samantha. We made phone calls to family (DHs mom), packed our suitcases and headed off to the hospital.
13 hours later, countess tests and many fever spikes later, we are told by an oncology team that our not yet four yearl old daughter not only has a cancerous tumor but there are actually two tumors: a 9cm tumor on her left and a more dangerous 3cm tumor on her right kidney and they are called Bilateral Wilms Tumor. Shell be scheduled for a port surgery two days later (it was Friday and theyll do the surgery Monday) and start chemotherapy immediately. WHAT?!? Because both kidneys were affected she couldn't have surgery until she had chemo to shrink the tumors and make them easier to remove. Our heads are still spinning at this point just taking this all in. Meanwhile she STILL has a fever and no one is sure what is causing it.
Monday comes (STILL fever) and Emily goes into pre-op for the port surgery. (Surgery #1). They give her some sort of loopy medicine that makes her tired but they waited too long from when they gave her the medicine from when they took her for surgery. That means she cried, I mean screamed, for me all the way down the hallway. My not yet 4 year old, first born child, was taken from me screaming to have a port put in facilitate administrating cancer killing drugs. We are a wreck. Once shes out of surgery we get the paperwork about her roadmap. A roadmap shows what drugs are given where and when shell have different scans/tests. We receive the list of drugs: Vincrinstine, Doxirubicin and Dactomycin. Each have side effects. Were still spinning. Give her drugs she could have major side effects or die; Dont give her drugs shell die from the cancer. Damned if you do, damned if you dont. We sign off on the paperwork, I crawl into bed with her and watch the first drug go into her IV and silently cry.
It got easier as the treatments went on. We debated putting her back in school. I mean, its hard enough to have your child go to school (even if its only 2 days a week) but now that shes undergoing cancer treatment and her immune system is going to compromised do we really want her in a germ infested environment? We talked to the oncology staff and they suggest keeping as much as we can normal which means keeping her in school and dance. We talked to the school and they are so wonderful in helping us. We found out that her TA was an oncology nurse before she started teaching and that folks, was the icing on the cake that gave us the piece of mind to send her to school! She even offered to put the emlela cream (cream that numbs the skin over the port so the kids dont feel the needle going in) on chemo days (Thursday) right before I picked her up. 
See, I was the one that would take her to chemo. Even though DH is a SAHD, I deal better with needles, blood and dont faint! I was the easy choice 
and some popcorn and make yourself comfortable. Cast:
Me - Dana; Obessive planner; Loves anything Disney and who talked DH into letting me submit DD1 for Make A Wish
DH - Jim; SAHD extrodinare. My rock and love of my life.
DD1 - Emily (aka Emy), age 5, the wish Princess
who simply amazes me each dayDD2 - Samantha (aka Sami); age 3, our Entertainer. Life of the party
Nana -Marilyn - Our saving grace, helpful hand and all around wonderful MIL to me.
Heres a little background on us. I got pregnant, had a WONDERFUL pregnancy cept for a little heartburn here and there. DD1 turned a year old and 1 month and BAM pregnant with #2. Life was humming along for us quite well. Happy as can be!
Fast forward to 2007 Emily started preschool and was so excited. Unfortunately she had an unusually HIGH fever (Im talking 105 here folks!!!)
and we figured it was strep and hauled both girls off to the last appointment of the day to their pediatrician, figuring if one gets it, so will the other. Pedi says, it could be urinary tract infection (happens often to little girls who start school and um, well, dont do so well with potty time at school). She feels around her tummy and then tells us to go next door do have an ultrasound done. DD2, the ansty pants child, wont sit still so I take Emily into the u/s room while DH has the Entertainer (aka Sami) walking the halls of the hospital. U/S tech scans Emily and when finished says there is a mass on her kidney. Not sure what to think but know Im not good with details on medical stuff franticly try to get DH into the room so when the radiologist comes in to give details that hell be there. (Crappy cell phone coverage at the hospital, figures right)? He made it in time and radiologist says its a TUMOR, more than likely Wilms. Is that cancerous, I ask? Yes. But I still hold out hope that its benign and we head back over to the peditircians office. We are put in room and the peditirican comes in with a box of tissues and CRYING. (You know its bad news when your DOCTOR is crying
) She explains that Emily has a mass on her kidney and that its proably a Wilms Tumor. Tells us to pack our bags and head to Childrens Medical Center because shell proably have surgery tonight to remove the mass. Say WHAT? DH cant even speak at this point so I need to find someone to come and watch DD#2 so that DH and I can BOTH go to the hospital. Understand, we have NO family in town so we had to rely on friends for help.
Luckily we have a great friend who just turned around (it was after 6PM by this time) and headed over to our house to take care of Samantha. We made phone calls to family (DHs mom), packed our suitcases and headed off to the hospital. 13 hours later, countess tests and many fever spikes later, we are told by an oncology team that our not yet four yearl old daughter not only has a cancerous tumor but there are actually two tumors: a 9cm tumor on her left and a more dangerous 3cm tumor on her right kidney and they are called Bilateral Wilms Tumor. Shell be scheduled for a port surgery two days later (it was Friday and theyll do the surgery Monday) and start chemotherapy immediately. WHAT?!? Because both kidneys were affected she couldn't have surgery until she had chemo to shrink the tumors and make them easier to remove. Our heads are still spinning at this point just taking this all in. Meanwhile she STILL has a fever and no one is sure what is causing it.
Monday comes (STILL fever) and Emily goes into pre-op for the port surgery. (Surgery #1). They give her some sort of loopy medicine that makes her tired but they waited too long from when they gave her the medicine from when they took her for surgery. That means she cried, I mean screamed, for me all the way down the hallway. My not yet 4 year old, first born child, was taken from me screaming to have a port put in facilitate administrating cancer killing drugs. We are a wreck. Once shes out of surgery we get the paperwork about her roadmap. A roadmap shows what drugs are given where and when shell have different scans/tests. We receive the list of drugs: Vincrinstine, Doxirubicin and Dactomycin. Each have side effects. Were still spinning. Give her drugs she could have major side effects or die; Dont give her drugs shell die from the cancer. Damned if you do, damned if you dont. We sign off on the paperwork, I crawl into bed with her and watch the first drug go into her IV and silently cry.
It got easier as the treatments went on. We debated putting her back in school. I mean, its hard enough to have your child go to school (even if its only 2 days a week) but now that shes undergoing cancer treatment and her immune system is going to compromised do we really want her in a germ infested environment?
We talked to the oncology staff and they suggest keeping as much as we can normal which means keeping her in school and dance. We talked to the school and they are so wonderful in helping us. We found out that her TA was an oncology nurse before she started teaching and that folks, was the icing on the cake that gave us the piece of mind to send her to school! She even offered to put the emlela cream (cream that numbs the skin over the port so the kids dont feel the needle going in) on chemo days (Thursday) right before I picked her up. See, I was the one that would take her to chemo. Even though DH is a SAHD, I deal better with needles, blood and dont faint! I was the easy choice 
No way could we afford her surgery without insurance. I set off to go through the exception route with my company and insurance to have them added and see what I can do and who can help me. 
It was adorable. I took her inside so she could look in the mirror and she turns and says to me, Mommy, I want my hair back. Again, it took all the strength I could muster to tell her its ok and once shes done with her chemo itll come back.
Yes. Pre-op Wednesday which means we need to be on a plane TOMORROW. OMG! Scurry out of the office to home to feverishly start packing, making reservations and calling insurance to verify, YES, MSKCC is APPROVED for her surgery! 
Emily develops a fever again but because she just had surgery, has a port and a nephrostomy bag, we are told to head back to the hospital. 1 ½ hours later we eat Thanksgiving dinner in an isolation room until they figure out if she needs to be admitted. She is. Were staying. Happy Turkey Day.
Well, guess what? Our first day at the MK, on our way to CRT, Emily is in the stroller that my MIL is pushing. The nephrostomy bag falls on the ground and gets run over by the wheels. No biggie right? WRONG! 
Best acroynm in the world! 
Surgery goes as planned. 
I got a little wordy with my intro but I wanted folks to understand why she really NEEDS this trip. 
We put the dates on hold because we weren't sure about all her surgeries and wanted to make sure she was "hardware free" ie no port, stent, foreign object in her body so she could enjoy the trip and be completely healed!. So we told our granters "Sometime in 2009". After Emy's last surgery in Sept, we gave our granters the green light to plan in 2009.
You know, me being the obsessive planner? I HAD to have SOMETHING to read about the trip? 
Such an amazing organization.
We are so excited. They had tentatively booked air, cruise and transportation for my MIL but she has since decided that she wants to book her own fare so we're just waiting for confirmation that they can remove her flight before our dates are set in stone. Hopefully we'll know early next week that our trip is BOOKED!! 
What to pack? Where will I find size 6 shorts and flip flops for Emily (she's outgrown the ones she has!)? What excursions to book with a 3&5 yo? Oh, and she has surgery #8 coming up Tuesday (11/4)....
I hate that word and can't wait until we find a cure!!!
Sending pixie dust for tomorrows surgery.
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