Oh where to start .....

So much to write about and for some strange reason I hardly feel the energy to do this but since you know me you will find I will have a hard time stopping once I start to write ... so

.... I owe it to my dumplings to brag about their huge success at our latest Ski and Snowboarding outing this past Monday. Ron and I wanted to see how a family outing to Monarch would play out and according to the boys and I it was one of the best days we ever spend together as a family playing together.

Ron was truly taken, seeing how well the boys did on their snowboards and after a few warmups on the Snowball Run with the Caterpillar lift we all headed over to the first lift. This part went well at the bottom but not very well at the top. All four of us fell off the lift due to the attendance not watching the lift and not slowing it down. The boys are still to short to get a fast jump off and by Ron and I trying to help them off but also being on skis was not the best combination. Ron went to talk to the attendant afterwards and it was interesting to find out he was smoking weed while on the job. We had one more hiccup on another lift but after that it went smoothly for Ron and the boys, thanks to Ron getting the Manager involved and him being very courteous and attentive to the problem. I admit I did not feel comfortable enough to take the boys up again but got a few runs in by myself and Ron even got some skiing in on the Black Diamonds.

However, the amazing part of this day is that we skied and snowboarder for 6 Hours!!! And the boys raced down the green hills and finished with a blue in the end. They got better the longer the day went on instead of tiring and Ron was confident in their ability that he took them one at a time on the Blue. We felt so proud and I love seeing that they have a gift for this as a true Colorado Native should :):):)

Now this was our highlight for the beginning of this week but here were our worries. 

On Monday our Niece Tammy went in for a serious Back Surgery. The surgery went well but she is still in the hospital recovering and might have to stay longer then planned.

On Monday my nephew Sebastian also went in for surgery on his knee. The surgeon took out a Tennis Ball sized knot and as of now he is also recovering well.

On Monday a very dear friend went into surgery as well. Monica is also recovering well and was released from the hospital last night.

On Tuesday I found out that another two of my nephews were brutally assaulted and both are recovering from numerous injuries.

We also found out that my Dad is still battling health issues that are scary and my brother is also due for a checkup for his foot.

There was a highlight on Tuesday afternoon and that came in the form of a phone call. I had a friend during my years in TX who was more like a sister then a friend. It was sad that five years ago life threw us a curve ball that had us loose touch. Thanks to Facebook we reconnected again and finally talked on the phone and hear each others voice again. I am very grateful to this as it was a missing part to my life.

Last night I sat down to do my part about filing taxes and that includes anything medical for our family and of course Connors medicals, treatments, millages, travel expenses etc etc.

Now before I write more there will never every be a price tag on my dumplings medical treatments and I said it in the beginning of this blog, and I say it now, that we gladly give all we have in order to save our boys life. I also know that there will never be enough money in this world to replace one of my babies.

All this however does not change the fact that I still get sad and a bit sick to my stomach when I sit down each year for the past two and look at the mountain of money we had to come up with to get Connor the treatments he needs and deserves and also still trying to give the boys the most 'normal' life and expectancies that other children have and take for granted. We never had any help when it came to paying medical bills or getting any donations. We know it is our family, and our responsibility to take care of our kids! The part that gets to me and makes me want to cry is the knowledge that not only is my son penalized with a disease that has no cure and had him in horrid pain in the past, on top of that he and his brother are robbed of the opportunity so many families around us do take for granted. The amount of money we use to pay medical related bills are huge even with Insurance. So yes we would take the same steps again and we do not regret any choices we made in regards to Connors care but does this mean I can not be sad and heat broken at the cost that comes with it???

I am ending with some pictures of the happy memories we made on Monday :)

Hugs,

R A C A

A busy but productive week :)

We had a really good week here with Connor feeling back to his own self again and us getting into the end sprint of First Grade :) 
Today the boys are already discussing how to celebrate their move into Second Grade which is only a few days away :)
I for once are again reminded how grateful we are to be able to Home school through all of this! Grateful to Mrs. Struble and her Cottage School which Connor and Alexander love. To Gateway Elementary for opening their school for this program! 
The boys are loving the Little Lincoln Online Program and I am happy to have a wonderful caring teacher, Elizabeth Callen, behind me who somewhere here in the USA looks over my boys Schoolwork online and grades them. I especially loved it when one day the boys had to take a test and they argued with me on how it should be done and how they wanted to do the work as a team. I finally thought I let them learn a lesson and said they should go ahead and do it their way and we scan it in and send it to Ms Callen and see how she grades it. Well, I was grateful to see her response that they had to each redo the whole assignment again. They both did and learned that they need to listen to the Instructions and me or pay the price and have more work in the end :)
We also rearranged the whole Classroom at home. We found that our dumplings are helping each other a lot and we needed a more independent setup for them. Where Connor shines more and more in his reading ability, Alexander flows through the Math and Science assignments. Funny then to see how they help each other in letting their brother copy school papers. Not the way I want them to learn obviously, so now they are sitting away from each other divided by a divider that can be removed when Team work is required :)


On Thursday I flew to DFW to meet with my Sister In-Law, Sam, who was passing through from Seattle heading to Richmond. She had a four hour sit-time and it was fun to sit and talk and catch up! Sam will be staying in Richmond to watch over her daughter, Tammy, who is undergoing Back Surgery on Monday. On my way to the airport I had the joy to drive through almost 5 inches of un-plowed Mountain Roads as there was a freak snowfall between midnight and 6 am and no one seemed to have been prepared for this. I was so grateful once again to have a car that did extremely well in those conditions and it was sad to see so many cars off in ditches and stuck on the side of the road! The flight to DFW was interesting as we had a great Flight Crew of Flight Attendants that were in the Mardi Gras Party Mode covered in beads and I was seated smack in the middle of the TCU Horn Frogs Basketball Team. So not a very quiet flight but fun and entertaining :) On my flight back I got to talk about AA Politics with a fellow AA Employee which is always interesting as well.


Then this past Friday also marked the boys second to last Snow Boarding Lesson. This was week seven and we have only one more session left. I have not been taking many pictures this time but plenty of Videos and they really have come a long way from their first attempt on January 6th. On our way home we were treated to seeing a herd of Buffalo graze right next to the road on HWY 24. We sat in our car watching them for about 10 minutes and it was such a beautiful ending to our day!


On another subject, in June 2009 I decided to be put on the Bone Marrow Donor list and contacted 'BeTheMatch.org', who send me a package with Instructions on how to be placed on the Donor list.
Now I have always been on the Organ Donor list since I turned 22. I figure my body is just a gift for the time I am on this Earth and I see no reason why someone should not benefit of the parts that are working should I die. I won't be needing my Eyes, Lungs, Heart, Kidneys, Liver etc etc when I am gone and it's not as if we have any use of those parts once we pass away. However, I am not sure why it took me so long to figure out that you can give something else but blood while you are alive. I must have read or watched a show about Bone Marrow Donations and how few there really are. If given it can easily save anther persons life (most commonly for Leukemia Patients). So I went on this list in June 2009 and other then some informational e-mails did not hear anything from them again.
You all know that by December of 2009 Connor became sick with JDM and I mostly forgot about the Donor Program. I was reminded here and there due to our stay on the Oncology Ward and I was thrilled to find out that Connor's first Roommate Henry, who has Leukemia, received a Bone Marrow Transplant from a man in Germany.
So this past Wednesday I received a letter from Be The Match that I appear to be a possible marrow match for a patient considering a transplant. It read that I should contact them as soon as possible to go over my medical history again and any changes and also for them to explain the two possible procedures to me.
All I can say is that after talking to them I am thrilled to be possibly helping someone. It seems there are only half as many donors as there are patients on the waiting list so please, please, please consider becoming one as well. There is no guarantee you will ever need to Donate, and there is still a chance they won't need me this time around as the Patient is in the early stages and it will be up to them and their Doctor to decide on the final treatment method.
The way I see it it won't cost me anything but time and a slight bit of discomfort, no comparison at all that this might save someones life ....


On another good note Elizabeth is doing much better and had her first day with out continuous Oxygen yesterday!!!


Thanks to us Home Schooling we are having school today on a Sunday so we can take advantage of living in CO tomorrow and maybe get some Skiing and Snowboarding in on a Monday when the ski lifts will be without lines and hardly any traffic on the runs :)

Hugs,


R A C A

Our love for long Weekends!

I was so grateful to have this long four day weekend because we needed all four days to get Connor through his cold. Yesterday was our first day of him being fever free and no coughing or runny nose. Alexander was only impacted with a low grade fever for about two days but Connor was hit hard with some very crippling headaches and just feeling plain miserable.

Now I do not get as worried anymore about the boys exposure as I used to since Connor has been tapering his Steroids, but I am still aware that he lost a lot of his Immune System boost after we discontinued the IVIG Infusions. This was a proven point when there is an exposure Connors body is not equipped as his brother or Ron and I to fight it off. None of us was hit as hard as Connor, and it hurts me to watch him suffer when the rest of us around him are not. We stuck to a very religious schedule of four hour intervals of pain and fever medications and my special German Cough-syrup and I am so glad it helped without us having to involve a trip to the doctor.   

Now a huge part of why I am writing this post is due to little Elizabeth and her family. They had by far a much worse weekend then us and her lungs have been under tremendous stress. Elizabeth has been on continuos oxygen and Breathing Treatments. Her parents have the whole setup at home so have been able to avoid going to the Hospital, however this does not mean it has been or is an easy battle. They have been up almost every night and can you imagine the worry and pure exhaustion this causes when your child has a hard time breathing? I remember this from Connors early days in January 2010 when I would hold him in my arms each night listening to him breath and praying he would keep breathing! The first night I was able to sleep agin was when we arrived in Chicago and he was admitted.

So keep Elizabeth and the Bailey Family in your thoughts and prayers!

The boys and I miss them today at school and we so hope to have her smiling face back in the classroom next week.

As to us we are back in school today and we took a little Field Trip yesterday to Golden, CO, to visit Buffalo Bills Grave and Museum. The boys loved it and I was glad we got to get out of the house again.

Hugs,

R A C A

Fever and Methrotrexate again ....

I just took Connor's Temperature after reading on FB that his friend Elizabeth has a 102.3'F temp and a sore throat, and as of now Connor is at 100.2'F.
I just gave him two Tylenol and we hope to keep it steady but of course we also worry about little Elizabeth whose Lungs are much weaker and much more compromised then Connors.
We know that Strep has been making the rounds in School so hoping we stay clear of this!

We had to pick up some more medication for Connor today as well (add $70 to yesterdays $300) and the Pharmacist that was working tonight told us that Walgreen's will be unable to get a hand on the Injection Methrotrexate until sometime in April!!! Can you imagine if Connor was not on the Pills? We would be looking at possibly six to eight weeks of no access to his Chemo Therapy unless we could find another Pharmacy that has the needed supply. Still makes my stomach nauseous ....

So here is my plea to you tonight. You might be able to make an impact and it will cost you NO money and might take less then 5 minutes of your time. Please call or e-mail your State Senator and tell them about your concern about the Drug shortage. PLEASE!

Here is another news report where a 9 year old boy asks his Mom if he will die if he can not receive his Methrotrexate Injections. Now look at your child or Grandchild, Cousin, Nephew or Niece and think what your answer would be...
Think of Connor and how would you feel if he lost his battle and would die due to a drug shortage?

http://www.wral.com/entertainment/holiday/story/10743231/

Hugs and wishing you a peaceful and relaxing weekend. I know we are laying low here.

R A C A

Just another week ....

The good news for Connor and us here at home is the answer we got from Walgreen's that they are not concerned at all at this point in keeping his Methrotrexate supply coming as he is on the Pills now and not the Injections anymore. It seems the Injections are in shorter supply then the Pills.
This is bittersweet for us as of course it takes a huge weight of my heart about Connor but I am still not at peace about this shortage as it would be pure selfishness to not think of the Families and Children that are in jeopardy.

Connor had to stay home yesterday from school as he started to run a low grade fever the night of the 14th. It was just 99.8'F and he was at 98.8'F in the morning but since we are trying to be conscious about Connor's exposure from others so are we about him being a danger to his class mates with compromised Immune Systems as in precious Elizabeth.
He does have a cough and stuffy nose right now and we know it was the right decision to have him lay low for this long weekend.
I did take Alexander to school and it was truly sad to watch how sad he was and actually cried a bit about not having Connor with him. They might not always sit next to each other or talk much to each other during school but they are never less safely blankets to each other. This lasted for the beginning off class and through music class but once snack break came and Blake started sitting with him and talking about football all was well again. Both Blake and Alexander had brought Footballs to school so you can guess what they played during recess :)

We are glad that there will be no Snowboarding tomorrow due to the Presidents Holiday Weekend so we can all stay home and relax and hopefully Connor gets over the bug that is bothering him.

I want to Thank again Walgreen's who has really been on top of Connor's Medications. It is still strange when I walk up to the counter and before I even reach it and start talking they look at me and say 'We get Connor's medications right to you'. The only medication they have a hard time filling completely has been the Cyclosporin and I get it in parts. This is fine with us as we are always covered and just have to come back in after a week or two to fill the rest of the order. I still have to smile that after us coming in about once a week after two years they still look shocked each time they tell me the price it is costing me. Today it was 'just' $300, but there have been plenty of times it was $600 and $800.

Wishing You all a wonderful long Presidents Weekend. In our House the boys voted as their favorite President, President Lincoln, because of how honest he was and how far he came from such humble roots :) A true American Story :)

Hugs,

R A C A

Happy Valentine's Day!

I have to say I know about two versions about the Legend of Valentine and here is the one that I love the best and therefor believe it should be the true one - haha:)

Legend has it that Valentine was a priest who served during third century Rome. There was an Emperor at that time by the name of Claudius II. Emperor Claudius II decided that single men made better soldiers than those that were married. With this thought in mind he outlawed marriage for young men in hopes of building a stronger military base. Supposedly, Valentine, decided this decree just wasn't fair and chose to marry young couples secretly. When Emperor Claudius II found out about Valentine's actions he had him put to death.

You can probably guess why I like this legend the most. For one I love anyone that stands up for love and second, anyone that is brave enough to stick up for their believe and take a stand has of course my admiration :)

It truly was a lovely day all around, first at home with a long breakfast and the exchange of cards but also at school. Mrs. Struble put together a most lovely day and Valentine Party for the kids and I felt so much support from talking to several other Mom's. It truly almost made me cry when I got hugs and so many words of wisdom. Thank You!!! 

I try not to add names to my blog unless I get the permission but one Mom told me today her and her husband have been reading the blog (yes, for some wicked reason my heart always drops when I hear this because then I worry how much ranting and raving I have done in the past - haha) 

Her words meant so much to me as I know just a little bit about the challenges and battles they have faced as a family due to Cancer, but mostly because she is always so calm and composed, kind and sweet and I so wish some of this could rub off on me :)

I actually have found some peace lately by distracting my mind with mindless TV during bedtime. Thanks to Netflix I am inhaling the Show 'Rescue Me' and in just less then a week I am getting close to finishing Season 2. Now this Show is at times very dark but also has so much strange humor to it that I find myself laughing out loud several times during just one show.

Now on my show the main character started taking Selectra SL, an antidepressant drug, and it turned him into this calm and happy person. So the next morning I told my husband that this might be what I need and he looked at me and said that might be a good idea! So maybe I should talk to my Doctor and after two years of being in battle mode I might have to drug myself to survive this Election Year. Especially after just hearing the news that Santorum is in the lead ;)

Back to this Valentines Day, Connor and Alexander have claimed this to be there favorite Holiday after Christmas. 

Once again they had me laughing on the drive home when they were both talking to each other in the back of the car and I overheard the word 'boy-girl'. I asked them what this word means and Alexander said that when they get married they want to marry a 'boy-girl'. I asked what a 'boy-girl' was and they both said it is a girl that loves to play like a boy and likes sports. I said 'Oh, you mean a Tomboy, and they said "'NO' - we don't want to marry a boy!" 

Oh my, I really love age 7 and I can only imagine how much fun age 8 will be like :)

So hope you all had a lovely day!

Hugs,

R A C A

P.S. Thank You so much for all the lovely Valentine's cards that came in the mail. I loved the one about 'The Queen has arrived' especially. :):):)

Snowboarding #6 :)

I can hardly believe we are now 6 weeks into the 8 week Snowboarding Program. Only two more weeks left and I have to say the boys are making huge progress :)

Their Instructor told their group of five that he thinks they will be ready for the Blue Runs when they are finished. He also has them super excited about his promise that they will go to the jumps come week eight. Now I am not so sure how ready they all are to do jumps but I am guessing that the Instructor wants to show them all what might be possible in their future. If I heard it right he just passed his test in Winter Park to be a Professional Snowboarder and the boys keep raving at how amazing he is. Of course they are also hoping to see Shaun White who is suppose to practice in Breckenridge on a regular schedule.

The biggest improvement came with their certification to use a lift. I was so proud to see them get on the lift and sometimes even all by themselves since the Instructor can only sit with one child at a time. The boys are so thrilled about going on the lift now since this means a lot more territory to cover coming down Peak 8 in Breckenridge :)

Most surprisingly of all to me is the fact that of our two dumplings, Connor is the one that has very good control on his board. Alexander is still fearless but his movements can be all over the place so it is not uncommon to see him skate or 'shred' as they call it into posts, netting's and on his last run down the mountain into a ditch.
This was the factor why the kids were delayed coming in for lunch. I was told the Instructor went down first with the kids following him. Alexander told me it was very windy on top so he skated right into a ditch and was unable to get out. Everyone but Connor was already on their way down so Connor skated over to Alexander and tried to pull him out but was unable to. Connor said he started to cry and then saw one of the Mountain Patrols on a Snow machine so he stood up and started waving his hands. The Patrol, which my boys say was the Police, came over and stopped to pull Alexander out. Now the story goes from the Ditch being 1 foot deep to almost 4 feet deep :)

So only two more week to go and then we are hoping for the four of us to go to Monarch and see how it all plays out.

Free Market :)

I wanted to add something about last nights post. I am NOT against Free Market but here are my thoughts when it comes to Medications.

What is happening with the Pharma Industry here is NOT actually free Market. The FDA is to blame along with them as they have been monitoring this shortage now for months. They said they are working with the Pharamceutical Companies to speed up production now but they are running out of time. Now they are looking for supplies from other countries. See, I see free Market where we should have had access from other countries medicine for a long time already. 
The FDA is great about talking about safely issues but I could list for example one successful Cancer Medications that have helped children with pain control for over 10 years in Europe but is not being sold here. There is the cream Ron uses for his Shoulder, Voltaren, that you need a prescription here and is very pricey but you can buy it over the counter in South America and Europe for a fraction of the price here. I only mention them because I saw it personally. 
Free Market to me is not something controlled by two parties, Pharma and the FDA. Open the doors and let us decide and I am guessing the moment this happens supplies will come flooding in and finally we would see what real competition looks like for our reigning Pharmaceutical Kingdoms here :) 
Ever heard of Bayer? 
Or the Government does indeed need to take the Generic Drugs that are life saving and have a lab that makes them and therefor controls the supply. Funny that I would say I would trust the Government more then Pharma because then I would hope it was about life not money.

Free Market, oh how well it works ...

So the FDA is scrambling to find resources FAST to supply Methrotrexate to the children that need it to survive. They of course showed kids with Cancer on TV, Leukemia for example, but all of you know that all or most of our JDM kids use Methrotrexate as well.
Connor has been on it daily in the first eight weeks since he started treatments, then twice weekly and now once weekly for OVER two years. Methrotrexate is the medical term for Chemo Therapy and how shocked are you to learn that there is an extreme shortage right now in Hospitals everywhere?

The reason you might ask? Well, it is a generic drug and there are three Pharmaceutical Companies making them in the USA. Unfortunately for them since it is a generic drug it does not make much profit so they do not meet the demand anymore.
Now the FDA has to look at other countries to find supply very fast as there might be resulting deaths happening to kids who are not getting this life saving drug very soon. This is not some hype coming from me it is on the news if you watch it or just pick up the phone and call a Children's Hospital or a Pharmacy and find out for yourself.

Oh, but then I was just told this week from a concerned citizen here in Woodland Park that we the USA are the greatest country when it comes to taking care of the medical needs of our citizen. As a matter of fact I was told no country comes close. REALLY???? should I start listing the European Countries that might put this all in question? and NEVER have I heard of a shortage of life saving medicine coming from Germany?
Yes, by now my enemies will want to yell at me to go back there but I tell you if you can't take the criticism and see the need for change then you are the one that is the enemy. You rather see children die just so you can be right? How sick is that?

So sweet dreams and trust me I will list every name of a child that will die due to this if I can find it. I hope with all my selfish heart it won't be my son. Remember he has Chemo Therapy every week?

You know what makes me the most angry right now? I was so prepared to write this really happy and funny post about today's Snowboarding incidents with the boys, but I am sick to my stomach right now so don't feel it. Maybe I will post it tomorrow.


R A C A

Correction :)

I wrongly wrote earlier today that none of the local news reported the whole Events about Santorum's Speech in Woodland Park BUT today I received the Woodland Park Courier View and they did indeed have a very detailed report of all the Events.

They even had a picture of Connor asking his Question, the only part that was not correct was his age, as they listed him at age 4 and of course he is 7 years old.

Thank You and sorry I wrote before getting all my facts right :)

Hugs,

R A C A

Family, Friends & JDM Family Support :)

I have to say I am so happy to have found so much support from so many many of you through e-mails, Facebook Postings and Phone Calls.

I do not want to keep going back and bore you all about the events from February 1st but how can I not highlight the people that have shown so much love and support.

There was my husband who never questioned anything we said to him when we came home that afternoon but right away posted about his thoughts. Our friends from AK who were so pumped up about his they made me laugh all night.
There were the friends who posted on FB, on my wall and theirs about the news that were traveling so fast. There were the phone calls and txt messages that made us feel loved and one phone call especially stuck out came from my lovely sister Beate, who read the news on her Computer in Germany (I had not mentioned anything to my family at all). She called and said that she was laughing and telling my oldest sister Carmen how we truly all carry the same DNA. She pointed out that it has been somewhat a curse in our family that we can not keep quiet when we see injustice but she said that I will become calmer as I get older :) She asked if I told my Mom and I said 'No' as I did not see how this has any impact for them but maybe I will after all.
I think I will send the video from 'The Rachel Maddow Show' to my Mom so she can at least hear Connor's sweet little voice, even thought being laugh at by Mr. Santorum might be a bit upsetting but she won't understand what he is saying so all might be okay :)

http://video.msnbc.msn.com/the-rachel-maddow-show/46246300 


I cherish everyone that reached out. There was a huge relief to know I did the right think when so many from the JDM Community, but also Parents with sick children that does not include JM but instead other Autoimmune Issues or Cancer was involved.
I have not had a bad response at all from anyone that has a sick child but instead felt some very cold shoulders this week from around the community. Only once was I actually approached about it and I could voice some of my opinion but I only got a blank look back. I can tell you that I might sound selfish but I knew in a heartbeat that this person never had to worry about loosing a child.
I also found it interesting that in any of the local news there was NO mentioning about the incident at all. There were several news prints about Mr. Santorum's success here in Colorado and his 'great' speech in Woodland Park and Colorado Springs but no mentioning about the Question and Answer section. This should tell you that Connor and I do not get much support at all from the local front but from a selected few that matter more then they probably even realize!!! Pippi ... you are one of them :)


So I could go an mention you all by name but will refrain from it as I believe you all know who you are and also with me being so scatter brained lately I would probably miss someone and then feel bad.


It is truly not fun being the odd one out but I have the most wonderful company along for the ride. It was really great to see an actually Video Thanks to 'The Rachel Maddow Show' and it put a focus on how sad it was to ask a serious question and then be laughed at by a GOP Candidate but also hear him be cheered on by the crowd. It was a lonely feeling that was only made better when we walked out and an older gentleman patted me on my back. We also made it to uTube but I have not watched it yet. Thank You to Kim, Annie and Shirley for sending me the links!!!
Connor voice comes on after minute 6 and you can just hear me a bit after minute 10.


So I have always known this! and once again again you all proofed that my Family and Friends are the BEST!


Hugs,


R A C A

A Day to Celebrate Elizabeth Bailey!

Today our family is so happy and thrilled to say that beautiful, smart and gorgeous Elizabeth had some very good news for all the children and teachers at school.

Elizabeth has a Brain Stem Tumor (Cancer) and yesterday she had to go to TCH for her annual MRI and the happy news is that the Tumor has not grown! The Bailey Family almost lost her last year but this cute and adorable fighter is still with us and for that we are most grateful I know being around her makes me a better person but also a more outspoken one.

If you remember, Elizabeth is in the boys class and we just adore her, plus I am so grateful to Elizabeth's Mom who has been such a wonderful friend to me these past few months.

So way to go Elizabeth for fighting the good fight and with a spirit like you how can we Adults not do our part to fight for more Research and better treatments for our children.

Much Love,

Hugs,

R A C A

The End! :)

I am late to respond to any of the articles that wrote about last weeks events. I might have gotten a response out to them but this past week got extreme busy came Wednesday afternoon. 

For one we had the most wonderful arrival of our precious friends Sammy and Celeste and then while they stayed with us we had a trip to the ER for Ron. We also had a trip planned to Denver for two nights to watch Sammy and Celeste's son Tyler Garcia play Ice Hockey. He is playing for the LA Selects this past year and it was a great chance for them to see their son play and of course for us to see Tyler play as well. The boys were thrilled to see the game on Saturday Night and the hugs they gave to Tyler after the game were priceless. The fun part was that on Thursday we watched some old home made videos of a visit of the Garcia Family in April 2006. Tyler was about 11 then and the boys were just about to turn 2!

Okay, I got off track but if I had the chance to respond to what happened last Wednesday here it would be:

To who it may concern,

I am sorry to be so late to respond to this article but I was very busy this past week due to my husband being sick and having out of town visitors. I am the Mom mentioned and Connor, my son, was the little boy asking Rick Santorum if he could help make Medication cheaper, meaning more affordable.

My son Connor, who has an identical twin brother Alexander, was diagnosed with Juvenile Myositis on January 11, 2010. JM is a very rare Autoimmune Disease and we believe the onset of his Disease was triggered (not caused) by an H1N1 Flu Shot my boys received in November 2009.

To try and be brief, we almost lost Connor to this Disease and only by the saving grace of an amazing Medical Team (Dr. Lauren Pachman and Dr. Megan Curran) from the Children's Memorial Hospital in Chicago is my son alive today! His muscles shut down at a very fast speed and within a few weeks he could not walk or move his body. At age 5 we had to carry him, feed him and try to hardly touch him as his muscles were horribly inflamed. It moved upwards as in him loosing the use of his legs first, to the use of his arms and finally his ability to lift his head as his neck muscles became weak. We knew it became life threatening when he started chocking on his food due to his throat muscles not working correctly.

We live in Colorado, but with some research we found that there was a Doctor in Chicago who had success treating children with JM. 

Now as in our background, my husband works for American Airlines and we always thought we had great Insurance through United Healthcare. So we flew to Chicago and Connor was admitted there for four weeks. There it was a touch and go and when he became somewhat stable he was able to be airlifted back to our home state of Colorado. Connor then spend another four weeks at The Children's Hospital in Aurora under the wonderful care of Dr. Jennifer Soep.

It took and still takes a tremendous amount of medications to keep Connor stable. He spend a year in a wheelchair and needed a tremendous amount of Therapy to relearn to walk, move and talk (remember every muscle was and is under attack). So he lost much of his ability to speak clearly, and hence the huge success for Connor who was not only able to stand up and look at Rick Santorum but also speak his question. From the beginning Connor was subject to daily Solumedrol Infusions (Steroids) for months, daily then weekly Chemo Infusions, then Injections and now luckily for him weekly oral Chemo Therapy, eight Methrotrexate Pills. He takes Daily Prednisone (Steroids) and Cyclosporin. This is another expensive and tricky drug due to the side effects it can cause to kidneys. Connor responded well to this medication but our worry is that he and his brother were both born with just one kidney each. Connor also made huge improvements when he stared getting monthly IVIG Infusions, starting in March 2010. Now, since we are taking about a rare disease there is no guide book in how to treat it and you will see many different opinions on this. We saw Connor trying to take a step for the first time, since he fell sick, after he received this Infusion. We credit this medication as in getting him back on his feet! Now one infusion of IVIG costs $18,000. Since it is not FDA approved for treating JM, an insurance company could deny to help pay for it. Luckily for us United Healthcare was wonderful from the very start and never failed to support us. However, many of Connor's friends are not that lucky and are suffering for the only reason that the medication they need is out of their reach due to financial reasons. When we added up the medical cost for Connors care for just the first year of his medical needs we arrived at the number of $1.3 Million. Now even if you have a great Insurance Carrier you might want to look at the small print and see that there is a Lifetime limit. For us it is $5 Million per person. Connor made wonderful progress but since there is no Cure you can guess why all of this has us worried. He might have coverage for another two to three years and then will be stuck with the label  of pre existing condition for the rest of his life.

As of today he is stable but to accomplish this he has to take 5 Medications in the am and 6 in the pm. He still has his weekly Chemo Therapy, continuously now for over two years.

Connor is very in tune with what is happening around him. He made many precious friends on the Oncology Floor at CMH and TCH, and at the Center for Cancer and Blood Disorders in Colorado Springs, however he has also seen many, to many, loose their battle. 

Both my boys are old souls at the age of 7, and both of them are used to talking to Adults (mostly those in the Medical Fields) and have been taught to show respect and look Adults in the eye when they are talking to them. Connor was so hoping to find support in a Candidate that has a daughter who is battling for her life but was in tears on our drive home after the meeting and told me he felt that Mr. Santorum did not care for other Children.

We were not asking for free handouts but for him to show that our children matter and that NO child should suffer or die in a country that has the Medications to keep them alive but instead keeps them out of reach for those families that cannot afford to pay for them.

How UN-compassionate can a person be to know children are dying at huge numbers (Pedriatic Cancer is the number one killer for our kids but gets the least research money, Adult Cancer Research and Aids get far more money). How can we as a country turn our back on children, the foundation of our future? New and hard lesson that my sons are learning! That the only people that will fight for their life's are theirs parents and they can only fight for as long as money is available? This is why I am so angry and frustrated. We are a very self-centered society that only looks out for our needs, middle age and up. Me, Me, Me at its best and here some complain that our youth does not have manners and does not care? Well, who do you think they are learning this from?

There is no cure for JM but with CureJm.org and the huge and selfless heart of the volunteers and Doctors we hope that someday there will be a break through and our kids will be saved. We get no Government Grants and all the Donations go straight into Research to Dr. Rider at NIH (National Institute of Health) and to the Research Dr. Pachman is doing in Chicago. Both my boys are on both Research Studies due to there genetic link of being identical twins.

So truly, what I want to see in a Presidential Candidate is someone that realizes we cannot neglect or ignore our foundation and future of this country. You have to make our children a priority and not have them die within the reach of the medicine they need. To tell them that you may die or be in pain and not get the treatment you need because you are poor? Really? Is that what we stand for? I just cannot accept this!

Thank You for listening to the Mom who did raise her voice to Rick Santorum, something I feel bad about as it is not in my nature to yell at someone. I was however frustrated that he did not understand the question from the other woman about the cost moreover did not show the respect to actually look my son in the eye when he ‘answered’ him.  Instead he had the nerve to compare a onetime investment for an iPad, which by the way is cheaper then $900, to parents scrambling to pay for life saving Medicine. I told him on Wednesday, February the 1st, 2012 in Woodland Park, CO, and I would tell him again, that I would gladly give my life in a heartbeat to save the life's of my children, going Bankrupt however makes me shake in fear that my son might not outlive me!!!

My husband and I are looking down a very dark tunnel with American Airlines in Bankruptcy and already announcing big changes to our Healthcare options and our Retirement.

I have been fairly quiet about all this for so long but my focus was of course on my Boys. Now however I feel the need to give a voice to our children. They have a lot to tell us and I think we all need to stop and listen.

Sincerely,

Anke Smith

Mom and Advocate to Connor & Alexander Smith, age 7

Lake George, CO 80827

Amen! :)

Fascinating Reading ...

It has been very interesting to read several different news outlets that have mentioned yesterdays Forum in Woodland Park :)

I have to say most got it perfectly right, starting with CNN and MSNBC, two I had to read twice (yahoo and a news cast from Denver) who said I asked Rick Santorum to pay our medical bills.

I can promise you I never asked him to pay for Connor's medication. Connor question was about having more affordable medications available for everyone.

I can say that all of Connor's medical cost was payed by our Insurance (UHC) and us. We never had a fundraiser to help us pay any bills or received any money from anyone in this regard.

I have in the past asked for people to consider donating money to CureJM, money that goes directly towards Research.

So we do take pride in the fact that we have not burdened anyone to help us (as of yet - haha) BUT if Rick Santorum does feel so inclined to help some families then please let me know as I am sure I can supply him with quiet a list of families that could use all the help they can get!

Thank You!

R A C A

Making Waves!

I am so beyond proud of my boys and today Connor really stood up for his believe.

I had no idea any focus would be put on this at all, a small gathering of about 300 in Woodland Park, CO, to listen to Rick Santorum speak.

I just found out from two dear friends, Nancy and Monica, that Connor and I are mentioned on CNN and MSNBC.

http://firstread.msnbc.msn.com/_news/2012/02/01/10293225-santorum-government-shouldnt-try-to-limit-drug-costs

and

http://politicalticker.blogs.cnn.com/2012/02/01/santorum-defends-drug-companies-in-health-care-speech/

Hugs,

R A C A

Matching Life with Politics

Today I decided to take the boys to the Ute Pass Cultural Center to listen to Sen. Rick Santorum speak. I figured if you have the chance to see a Political Candidate speak you should go and listen.
After all, I told the boys this is not just about your own political believes but to hear other peoples ideas and also ask questions if given the chance. There is a chance, even if I think it is a slim chance that he will run for President this year, but given his age he might be a factor for a long time to come.

So we left school early and found ourselves in a very packed avenue. We were able to sit on the floor in front of the stage with several other children and Mothers, plus young Adults.
Connor was prepared to ask a question if given a chance. We listened for about one hour and then he opened the Microphone for questions.
Now you have to realize we did NOT go there to cause any problems but state a very big concern that is impacting our life on a daily basis.
Connor new he wanted to ask him if he could make medications affordable for all. He knows that his medications are costing a lot of money and he also knows that some children with JM do not get the same treatment as he because of the cost factor.
Since we talk very openly about everything in our lives he knows that his treatments during his first year cost our Insurance 1.3 Million. He has a 5 Million Lifetime maximum, and with no Cure around yet the will travel through life with a black mark on his Medical Charts that will always count him as a person with a Preexisting Condition.

I had a feeling that Connor's question he wanted to ask and my concerns would hit a snag when Sen. Santorum said during his speech against ObamaCare and RomneyCare that he would not force Insurance companies to take customers / patients with preexisting conditions. He said to force them to do this would punish other Clients as it would raise the cost of Insurance premiums.

So there Connor was sitting with his hand raised and the Microphone went first to a woman who asked a similar question that he wanted to ask. She said that the Pills she is taking cost $900 a month and if there will be help in this regard.
Sen. Santorum voiced the fact that he would not influence the Pharmaceutical Companies for the one reason that he believes in Free Markets and that they need to pull in profits so they can in return use this money to develop new Medications and focus on Research. He then stated that the problem with people is the fact that they rather go and buy a $900 iPad then pay for medications that can save their lives! Now, you know my heart started beating faster right then because I then realized that in no way would Connor get an answer he would find comfort in but neither would I.

There was another question after this and then Sen. Santorum tried to wrap it up. However a Lady behind us and a Gentleman said that he should take the question of the little boy upfront - Connor. So here Connor stood up and asked "Can you make Medications Cheaper?"
Santorum looked down and made a joke about him not being sure if he wanted to take a question from someone wearing a Packers Shirt, and after a few laughs he again said he would not restrict the Pharmaceutical Companies and that Free Market needs to rule. He said that those that go and buy cheaper medications in Canada and Mexico are hurting our Pharmaceutical Companies and that they are stealing money from them that they can use to develop new medications. He said that those that need medication will find a way to pay for them. Now he used prices much lower prices for examples then the ones we are faced with.
This is when I got pretty heated up and, yes, raised my voice. I pushed Connor forward and told him loudly that he is looking at a child whose medications and treatments are costing 1.3 Million a year and not just a couple of hundred dollars! I said I would give my life in a heartbeat to save my son but what future does he have when he runs out of his lifetime max and no one will want to Insure him! I told him how it feels to see kids dying because they are not getting the treatment they need. KIDS!!!! Not some middle aged Americans. KIDS!!!
Well, he pretty much ignored me but got some in the crowed going about we need to keep this a Free Market and that we will be on top by having the best medications available in the future to come.

Well, good for him because I am sure he can afford those medications. The rest of us I guess will be screwed.

This was the end of this event. He walked off the stage to the right and we headed to the exit to the left.
I was sure we would be one of the most unpopular people in this room and I was surprised when an elder gentleman patted me on my back on the way out.

I truly did not go there to cause a scene. Healthcare and my son's quality of life is the most important issue for me and I truly wanted the boys to learn how to ask questions and also listen well to the answers. See if they like what they hear and have them make their own opinions.

Well, Connor was almost in tears because he thought Sen. Santorum does not care about children and there families that need help. I did NOT put this in my son's head ... he heard the message loud and clear from Sen. Santorum himself.

I did ask the boys at home if they thought I did not acted appropriate because I raised my voice. They looked both at me and said "No Mom, we were proud of you and yes you were loud and you seemed angry but you did this because you care about us and other children.

So there, I am glad we went but you can be sure he would not be on our list to vote for. The boys were actually upset after they told me they would not vote for him and I mentioned they couldn't anyway because they are to young. They are ready to vote NOW and I am guessing they would do a lot better then some Adults out there :)

Oh and as to the Medication versa iPads? I am sure the Lady that asked this question would love nothing more then buy an $900 iPad each month for the rest of her life (by the way I remember them to be cheaper) then get the medications she needs --- sarcasm!!!. How does $900 for medicine a month even compare to buying an iPad that will last for 3 to 5 years? Plus I thought he would have compassion since he has a very sick daughter. I did not see that and that is what shocked me the most.

Glad to be home! and now off to preparing our home for our visitors from AK that are arriving tonight :)

Hugs,

R A C A