Wednesday, October 22, 2008

Hannah was home from school today. She woke up with a stomach ache again, then threw up, then asked to go back to bed. She slept another 4 hours, until noon, and that is on top of the 10 1/2 she already had during the night. A bit bothersome, but I'm remaining calm, breathing...calm. Increasing her nausea meds beginning tomorrow, hoping that helps.

Here is Hannah the nurse helping me with my daily infusion. The first night went well (well, the nurse was here with me), but last night was a comedy of errors. I got a bunch of air in the line, fixed that, then couldn't get the medicine to infuse properly. Then I had to drive with the bag still hooked up, oh brother. Finally got it done. The 30 minute infusion lasted about 2 hours. Tonight was much better, went well until the end.

Getting ready with the gloves

Favorite part-priming the saline and getting to shoot it up in the air!

Hooking up the line

Very focused!

And she's done!

Thank you Colby for being our wonderful photographer. I'm not sure I even have the date correct on this post, I'm kind of foggy right now! The doctor said this medicine will make me feel much worse before it makes me better, and what do you know, he was correct. So, signing off for tonight, sharing one more thing. This poem was written by my friend Mimi, Julian's mama. She is such a great writer, always with feeling and emotion. Hate the cancer, but LOVE THE POEM MIMI!!

CANCER MOMS

I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.
Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran , bald heads
Are always parts of our conversations,
As well as roidrage, tears, and meltdowns…
We always know where the closest puke bucket is ,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We can drive to the hospital ,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you,
With our eyes closed at any given time.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand ,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And on maybe only one meal a day .
We know the names of up to 20 different drugs ,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day ,
Seven days a week.
We are used to not always looking our best,
Hard to do with only a few hours of sleep .
Make up , hair styling, skirts are words of the past .
We have become addicted to texting ,
hospital, clinic, home, wherever…
We talk sometimes at all hours of the night ,
We know we can count on someone to be up.
Then for one of us , the world stops .
She has to walk away, broken.
This job is over .
The job is over, but the fight is on.
Remember , I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen , we vent , we cry , we laugh together .
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice ,
Sometimes we win , sometimes we lose,
But never are we defeated .
We are not nurses
We are not doctors,
We are cancer moms…
Mimi ( 10-18-08 )

♥Kim

Monday, October 20, 2008

We had a good weekend, hope you all did too. First, our bake sale. We were hoping to have the sale this Saturday on the 25th, but I just learned that Hannah will be at a birthday party sleep over the night before. I don't want to ask her to leave early on Saturday to come and do the bake sale, so looks like the sale will be the next Saturday, November 1st. Besides just the sleep over, it's really been hard for me to get up and make the cookies. We did have some time this weekend, but I spent most of it in bed.

I was bummed that I couldn't go Saturday to our friends Tom and Sue for a party they were having. I woke Saturday morning with those flu like symptoms back...grrrr Lyme Disease. they lasted most of the day, and by Sunday I felt I had a bad hang over. I did get my Pic line in today, it wasn't too bad. They gave me a very mild relaxation med, at my request, so maybe that helped. the catheter they put in my arm was about 2 1/2 feet long, and goes all the way up to my heart. It didn't hurt, but I could feel it as they pushed it in. Home health care came by this afternoon, so I had my first dose of the iv meds. So far so good, hopefully relief will come quickly. I'm tired of being sidelined from all the things I would rather be doing!

Colby had her first 2 basketball games of the season, and her team won both! Way to go, it was fun to watch and the team is very good together! 

Hannah had riding on Saturday and riding tonight also (Dave took her.) More of those back flips...but let me explain it a bit more for all you who freaked out when I mentioned it last time! She lays across the saddle on her back. The instructor then holds her at the waist while Hannah flips her feet over her head, and flips off the horse onto her feet. Thank goodness it's a pony! 

A few angels I would like mention tonight for you to visit, if you are so inclined. I have become friends with some of these mothers, wonderful people who are still so involved in the world of childhood cancer after the death of the children, continuing on in their honor. These are really some very special angel sites:

http://www.caringbridge.org/visit/shelbyr
Sweet Shelby passed away from preB ALL last year. Her site is very moving.

http://www.caringbridge.org/visit/jessicarandall
You all know Jessica, our special friend who died just 3 days after her 17th birthday from Grade 3 (anaplastic) astrocytoma. Her mom is a warrior in the cancer world, working endlessly on Team Unite and so much more!

http://www.carepages.com/carepages/JuliansWorld
Our King JuJu and Mimi his wonderful mama.

http://www.caringbridge.org/visit/henrytucker
Henry lost his battle with leukemia at age 6, in June of 2007. His family, even in their grief has become quite a force in raising childhood cancer awareness and funds!

http://www.caringbridge.org/visit/jacobwilliams
Jacob just lost his battle with glioblastoma multiforme just three weeks ago.

http://www.carepages.com/carepages/KATIEMETZ
Katie was 13 years old, and lost her battle with Diffused instrinsic Pontine Glioma (DIPG) nearly a year ago.

http://www.caringbridge.org/visit/ardenquinn
Arden died at age 3 years old from neuroblastoma in August, 2008

And the list goes on.....unfortunately.....and on.....


♥Kim

Thursday, October 16, 2008

So, what we've been up to this week-

Monday, we took a hike in an area near us where dogs are welcome, so we took Tod and Riley. We haven't been hiking there together in quite a while, probably last fall. Last fall Hannah couldn't walk the whole way, we had to pick her up and carry her for much of the time. This time, while she started to complain at the end of the walk (and didn't get picked up), she made it! It was an eye opener to how far she has come. She was running with Tod, walking up steep hills, walking in sand. It was great! What wasn't so great were all the ticks we found at the end of our walk. We had let Tod and Riley off the leashes for part of the time-taking a very big risk with "the bullet" Tod who immediately darted away at full speed. But, just when you thought he wouldn't come back, he would turn around and surprise us. It seems on those jaunts around the woods, both dogs picked up quite a few ticks. We started searching them before we got into the car, and found a total of 14 TICKS...yuck! We all came home and stripped down and checked ourselves like monkeys :) Not one tick on us, which is good. I can't imagine one of the girls with Lyme Disease.

So, speaking of Lymes, I saw another doctor Tuesday who said not only was I treated with ineffective, out of date drugs, the other drug I was given was not a high enough dose! This Monday I go to ambulatory surgery to have a pic line put in (a semi-permanent iv line, with a long catheter that goes up the vein in my arm, to one of the main veins in my chest.) Doesn't that sound pleasant? I will start the IV antibiotics Monday afternoon for 30 days every day for 30 minutes. It sounds pretty harsh, so I'm hoping this is a one time deal and I'm done!

Hannah saw the endocrinologist Monday also. We waited for over an hour in the waiting room,the whole family, which seemed like an eternity. All checked out with her blood tests and her growth rate, so we don't go back for another 6 months...April to be exact. Seems strange. She is still on Vitamin D and Vitamin C daily supplements to build her bone density. Most likely she'll have another scan after our next visit to check and see if her bone density has increased. She doesn't have the pain any longer, so that's a good sign.

Hannah did have one sick day at home this week. On Wednesday, on the way to chorus we had to pull the car over, and she was sick outside. Poor thing, she thinks nothing of throwing up on the side of the road as cars are speeding by. After coming home to rest a bit, she decided to go in to school at regular time. by 10:30am they called me to come pick her up. She had a stomach ache and wasn't eating. She came home and took a 2 hour nap, and finally after eating some dinner, felt better. She has been fine since then, so I don't know if it was a bug or tumor issues still.

However, she has done some amazing things this week, today as a matter of fact. She is the captain of the lacrosse team in gym class at school and was telling me this morning how she didn't realize this came with so many responsibilities. So today in gym class, she scored a goal and turned around to Mrs. W, her aide and said "I got it back!" Isn't that great? 

And also today, she tested for her bronze medal at swimming lessons. She had no problem at all, and was smiling ear to ear when she got to ring the bell and get her medal! She loves swimming and I signed her up today for lessons through July! 

A few more kiddies that need our prayers:

http://www.carepages.com/carepages/AmberDugan
Amber was diagnosed with Stage IV Ewings Sarcoma at age 9. Since then she has relapsed twice and is now on an experimental drug trial.

http://www.caringbridge.org/visit/garettchanley
Garrett had medulloblastoma, and just recently heard that the disease remains on his brain and spinal cord. He is in New York City right now, however found out today that his MRI showed growth and he is headed back home.

http://www.carepages.com/carepages/NICHOLASDEFELICE
Nicholas is a 5 year old with neuroblastoma. Diagnosed in 2006, he relapsed in September of 2008 and is starting the fight again.

And our kids who have earned their angel wings:

http://www.carepages.com/carepages/JuliansWorld
Our King JuJu

www.caringbridge.org/visit/brendankizer
Brendan just died last week. He had Burkitts Lymphoma and he was getting ready to receive a bone marrow transplant when he relapsed and passed away.


♥Kim

Wednesday, October 16, 2008

TIME TO VOTE EVERYONE!!

You may remember that Stand Up To Cancer aired on all three networks about a month ago. Well, there is a group of 20 people who are now deciding what areas of cancer research to spend the $100 MILLION that was raised. Here's what you can do. Go to http://www.standup2cancer.org scroll down to the bottom, at the left side is the contact us link. (Very small wording) Click there, fill out the form selecting "Request SU2C funding" in the drop down menu. In the comments section ask for funding for childhood cancers because of their lack of funding and low survival rate for many different types of childhood cancer. It only takes a minute and you will be helping show support of all these children with cancer.

Thanks and good night! More to follow tomorrow...

♥Kim

Sunday, October 12, 2008

It seems that our long weekend is quickly coming to an end. Friday Hannah had a horseback riding lesson at a barn where she got to ride a pony named Batman. She was pretty happy about that! She also got to do a back flip off the horse's back (while mom almost had a heart attack.) She did it twice with the instructor, and seemed to be ok with it. She still gets dizzy going upside down, so I was surprised.

Saturday Colby went to Montauk and Dave went to Rhode Island. That left Hannah and I here to take care of a couple things we have been wanting to work on. First, we headed out to shop for craft supplies and games for two hospitals-Spaulding Rehab in Boston and Schneiders. This has to be one of Hannah's favorite activities...shopping for crafts, toys and games. She said the only thing that wasn't much fun was that NOTHING was for her...ha ha. As our cart started to fill up with nothing but games, people starting staring! When standing in line, we started talking to a mom and daughter behind us who asked if we were preparing for a party. We told them it was for the hospital, next thing you know they pitched in $20!! The kindness of strangers is amazing.

Then it was home, with a stop at Harbes for roasted corn. We waited in line for 25 minutes for corn!! Hannah said "at least it's sunny and nice out!" The place was mobbed, but she had been asking for corn for a few days and she loves their roasted corn (hence the corn video). She had 3 ears of corn and ate them all. It took us forever to get home after that, the pumpkin crowd was tremendous.

On to our second item of the day...baking! It's that time again, we are gearing up for our 2nd annual Smiles for Scott bake sale. Looks like it is going to be Saturday, October 25th, weather permitting. All the money will be donated to the Smiles for Scott Foundation. Scott lost his battle with medulloblastoma (same kind of cancer Hannah had) at age 5. His family raises funds to enhance the care and lives of children afflicted with cancer. Most importantly (for Hannah) they run the Friday candy cart at Schneiders. She used to look forward to this no matter how sick she was. Sometimes she didn't even eat any of the candy, but she would always get out to that cart, often getting things for me and Colby. Last year we raised $400, and this year we hope it's double!! Please help us spread the word if you live locally. I'll keep you updated on the date and time.





Tomorrow the girls have off school again, and Dave is off work also. Hannah has an appointment with the endocrinologist to check her blood levels since starting the vitamin D and C supplements. After that, we are planning a family trip to Dave's gym (where they have a pool and kids size rock wall and work out equipment). Then it's off to our favorite pizza place together. Tuesday it's back to our regular routine and to the lyme doctor for me. I've never looked forward to a doctor's appointment as much as this one.

Here is another list of little ones in need of our support. Please give them a kind word when you have a moment. My plan is to list the kids here, then transfer their blog links to a new "links" area I have listed on this site on the left hand side. Little by little.

Enjoy your Columbus Day!!
♥Kim

http://www.caringbridge.org/visit/sinjinandrukates
Sinjin and his moma are such good hearted people. Sinjin has Burkitts Lymphoma and just recently finished his bone marrow transplant. He has developed a strange rash, and they headed back into the hospital, praying it's not a relapse.

http://www.caringbridge.org/visit/katemadigan
Kate has been through a lot, and has relapsed again with neuroblastoma. She is due to start antibody treatment at MSK soon.

http://www.caringbridge.org/visit/isabellasantos
This little sweetie is fighting Stage IV neuroblastoma, diagnosed at age 3. She relapsed this spring, and is in aggressive treatment at Sloan in NYC.

http://www.carepages.com/carepages/SuperBay
I've mentioned Bailey here before, he is fighting stage III Rhabdomyosarcoma, a very aggresive soft muscle tumor. His last scan showed two new nodules in his lungs and waiting for more information.

http://www.carepages.com/carepages/CarsonTerrell
Carson is only a few months old, fighting an unknown cancer.

Friday, October 10, 2008

The girls are off school yesterday and today for Yom Kippur, and Monday as well for Columbus day. We all slept in yesterday ...yeh...and then started the day off with a trip to the pilates studio to see baby Chelsea. She is just so cute, and the girls both enjoyed playing with her, holding her and singing to her. That was fun!!

We headed over to gymnastics next, where I taught a class of 3 and 4year old...the girls helped by demonstrating some of the floor work for the kids. Afterwards, we went with Bonnie, Cassidy and Cody to the pumpkin patch. I'll post some of those pictures tomorrow after I download them from Colby's camera. The girls had fun with both of those cutie pies...Cassidy was calling them her sisters!

Then we headed out for Hannah's swim lessons. She just loves swimming. She is doing very well, next week she is testing for her bronze medal! She was pretty excited about that. Again, pictures soon from Colby's camera.

One last thing about us, since the Yankees are out of the playoffs, I shouldn't say out-they never made it in in the first place, Hannah has once again thrown her support towards her other team...the Boston Red Sox. Here she is in hear Red Sox gear today, giving them a big cheer!! Let's Go Sox (did I really say that?)


Now onto our friends. I don't post that many kids on here, although from time to time I do mention some of our friends. Well, I want to mention many of our friends here now. It seems that in the past few weeks, there have been an overwhelming number of kids that have either relapsed or died. It's very scary really. EVERYWHERE....EVERYONE. It's hard to believe, and hard to swallow. It's just hard. If you have a moment, I know these families would appreciate a visit and a kind word. Our support really helps them.

***I started this post last night, but after the list of kids became so long, I decided to do this in multiple posts. Here are some kids who desperately need our support right now.***

http://www.carepages.com/carepages/ColemanScott
Our dear friend Coleman, it is not great news. Not only has the cancer in his brain and spine spread, but is now leptomeningeal spread...like a sugar coating on the spine. Go and visit Coleman, they would appreciate your prayers.

http://www.caringbridge.org/visit/chloeschmidt
Beautiful Chloe is nearing the end of her fight with alveolar rhabdomyosarcoma. **Update, even before I could get this posted, Chloe passed away last night at 11:57pm. Please offer her parents a word of support.

http://www.caringbridge.org/visit/jacobwilliams
Jacob is battling glioblastoma multiforme, his lungs are now filled with fluid and he is and nearing the end of his life.

http://www.caringbridge.org/visit/kaseyradford
Kasey has been battling a glioblastoma multiforme since 2006, and his family received difficult news yesterday. His mom Amy often visits Hannah's site, and has become a friend.

http://www.caringbridge.org/visit/matthewlitchfield
Matthew has chronic myelogenous leukemia, and is in critical condition now after relapsing.

http://www.caringbridge.org/visit/diegofuentes
Sweet Diego was diagnosed at age 3 with localized Stage 3 Spindle Cell Embryonal Rhabdomyosarcoma in October of 2006. Sadly he relapsed on February 20, 2008 and his arm was removed to stop the spread of the cancer. It has now spread to his lungs.

http://www.caringbridge.org/visit/aws
A few posts ago I posted a letter from a mom...it was from this website. Sandy was diagnosed with breast cancer and 4 days later, her son was diagnosed with an inoperable brain tumor...Diffuse Intrinsic Pontine Glioma (DIPG). Sandy just posted a list of children also in need of prayers and out of the 16 they posted, I only know 2. There are so many kids out there with cancer, it's unbelievable.

Please take a moment to visit these kids and drop them a kind word. It means so much to the parents, as it means to us when you all visit Hannah's site.

♥Kim

Monday, October 6th, 2008

It's been a week since my last post, yes we are still here!! Sorry about that, I have received a few emails and calls to check on us, thanks!

Let me catch you up a bit on what we have been up to. I have attempted many posts in the last week, but I just haven't been able to make it through to any of them! I usually post at night, and it seems I can't make it through a post without falling asleep. Unfortunately soon after I stopped the medication for the Lyme disease that was just beginning to help, my symptoms all came back. I then decided it was time to find a doctor who specializes in Lyme. You would think that out here in Lyme heaven that would be easy, but not so. After much internet research, I have come to find out a lot about this disease that I didn't ever want to know.

For example, you can't really find a Lyme doctor online because doctors don't want their information publicized. Why? Because the medical regulating agency sets the standard for how long a patient with Lymes is treated-usually three weeks, then you're done. That seems to work well in patients that get bitten, see the rash, go to the doctor, all in a relatively short period of time. If you are like me, whose symptoms appear slowly over a long period of time, never saw the rash and have probably been infected for months, that treatment is highly ineffective. Several doctors I have read about realize this, came up with their own methods of treatment and did find some success in curing the disease. Many of those doctors were then investigated, and lost their medical licenses for using the drugs outside of the prescribed dosage and/or timeframe. It is so strange.

After much "underground" research, I was able to secure a recommendation for a LLMD (lyme literate MD) on Long Island. I made an appointment for next week. In the meantime I pleaded with my primary physician to put me back on the antibiotics until that time, but he refused saying I had two different drugs, for 3 weeks each, and was not cured, therefore, he is not convinced that it is Lyme disease, rather than something else. It's very frustrating, considering I tested positive for Lyme and nothing else and have ALL the major symptoms. I have constant headaches, occasional flu-like symptoms, extreme fatigue, joint pain, lower back pain, dizziness, irritability, anxiety, depression, memory loss, confusion, cognitive decline, insomnia, sore throat, ear pain, etc.

It's not a lot of fun. I just try to keep moving throughout the day so that I don't end up on the couch. Ok, enough about me, what else has been going on?

Hannah started swimming lessons again this week, and she really enjoys it. She has been asking to go back. School is about the same, homework has become more challenging for her. She worked for 2 hours one night last week on her homework. She wasn't frustrated, so I let her keep going. She shouldn't be working for more than 1/2 on it, plus 20 minutes of reading. She did start going into school a 1/2 hour early, 3 days a week to get some pre-teaching of some of the material. It seems to help if she can preview the work before she does it in class. It decreases her anxiety (a little) and gives her another opportunity to see the work. She needs a lot of repetition.

This weekend she had two friends over for a sleepover. Since Colby is always having girls over, or at their houses, Hannah wanted to have girls over too. Of course she had a list of what to do at the sleepover, what to eat, crafts, etc. We went to the movies to see Beverly Hills Chihuahua and it was really cute. Chihuahuas are Hannah's most favorite dog and she was delighted with the movie. She had a few moments of anxiety during the sleepover, but she came to me, and we worked it out, so there were no scenes of crying (which was my biggest fear).

I received a call late Saturday night with an invitation to go into NYC to meet with 3 other medulloblastoma families. My friend Nancy, Jacob's mom, whom we met while in Boston for proton radiation and have stayed in touch with, called to invite us in for a day with two families from out of town staying at the Ronald McDonald House. She knew one of the moms-Anne White-son is Zachary and we knew the other- Coleman!! We had wanted to try to meet the Larsons while they were in NYC, but didn't want to impose at a time of stress for them. Coleman and his family came back to NYC last week to start his new treatment in hopes to finally get rid of the cancer that has come back for a second time. I hadn't posted this yet, but in preparation for this antibody treatment, they discovered that Coleman's cancer after the last round of chemo to try and shrink the spots just a bit more, is bigger. Bigger in his head and bigger on the spine. NOT what they were hoping for. The antibody treatment is now on hold while they explore what to do next. The antibody works best if the cancer is under a certain size. And, it's only a one time shot-can only do this once.

So, the girls and I headed into the city yesterday to meet with Nancy and her younger son Ben, Anne and her son Zachary, and the Larsons. We met at the Ronald McDonald house in NYC-which is an amazing place then headed over to central park. We walked and talked and eventually wound up at the zoo. Hannah remembered Ben from Boston, and Colby asked if Ben had cancer too. I told her no, it was his older brother Jacob, who didn't come out yesterday. The kids all had a nice time, and it was fun seeing Caden and Coleman together in person. Coleman was a bit quiet, he is still recovering from his last round of chemo, all the tests and latest surgery to put the reservoir in is head so that the medicine can be put in directly to the CSF in the brain. Zachary and Coleman have the same stitches right now, both having had the surgery last week.

Our conversations weren't about what schools the kids go to, or what new activity they are enrolled in. Our conversations were about diagnosis dates and cognitive issues and chemo. Out of the 4 families there, Hannah was the only one that had not recurred, or still had refractory cancer. I try not to dwell on that too much, it drives me crazy.

Sure wish we could have spent some more time there with everyone. It was nice to meet Anne, and her son Zachary was a smiling little boy who is just the cutest. The Larsons-what can I say, they are simply a wonderful family. They are sincere and down to earth people, so easy to talk to and fun to be with. Friends. Please say a prayer for all of them as they continue to fight the fight.

I'll post some more pictures later....here we are!

♥Kim