Connor JDM up-date :)

I am lately debating to change the headline of our Blog since the more I think about it we as a family have changed in many ways due to JDM but it has not defined us or brought us to our knee's, so we are still heading forward on our journey and I am ready for JDM to take a bit of a backseat.

Yes, while typing this I am worried a bit that my arrogance might bite me in the behind, and it is fragile to think JDM is behind us when Connor is far from Remission and still gets his Chemo treatment once a week and IVIG Infusions once a month, plus of course the daily Steroids .... BUT... here is why I am hopeful: three months ago we had to stop the Solumedrol Infusion due to Connor contracting Strep ... the shock was that he showed no reaction to missing the infusion. We the stopped cold turkey and did not resume the infusion for the last two months. We also kept cutting back on his oral steroids (Prednisone) and we are down now to 1 ml a day!!!! this is really amazing. So how is Connor reacting to all this? Not at all! He is doing amazing and seems stronger and stronger all the time. Last week during Hippo Therapy, Amanda his Therapist, asked me if I have noticed any changes in Connor. So right away I was worried she would point some weakness out that I had not caught but she had observed during his Therapy. Imagine my surprise when I said no and she smiled at me and said that the only change she sees is how much stronger he is getting each week she sees him. Now all this after I made the call four months ago to stop all the Therapies other then Hippo due to Connor's mental state of being burned out to be dragged to places he did not enjoy. Instead we turned his 'Therapy' into free play in the forest around our house. He is back to climbing tree's, jumping on the Trampoline and doing everything his brother is doing. Yes, he still is not as flexible as Alexander but hey, one year ago he was hardly walking at all and sitting in a wheelchair most of the day! Oh, and I almost forgot but for the first time since he got sick his blood level showed that he is not anemic anymore. We are not sure if it is the Iron Supplement that is helping it all but it is the one change Dr. Soep did and now we are finally seeing good numbers on that end as well :)
Now back to my arrogance .... many might say that Connor and we as a family are just lucky..... but I tell you that my believe is 'luck' has NOTHING to do with it. We as a family have battled through a Tethered Spinal Cord Surgery for Alexander when he was just 1 1/2 years old. Connor followed suit just 8 months later with the same diagnosis. Even then we did not go with the average team but opted to find the best Doctors in the field to perform a surgery that could have left the boys paralyzed. We went against our insurance plan back then and payed for a team what we believe even today was better equipped to handle that kind of surgery. The boys were in the hands of the Neurosurgical Team at The Children's Hospital in Dallas who just a couple of months prior had separated the famous Egyptian Twins. One of the Doctors working with that Team, Dr. Angela Price, was the most amazing Doctor we ever met. Yes, even then we looked for what we thought was the best and luck had nothing to do with it. We ended up paying about $20,000 out of pocked for each surgery and we have no regrets!
Same is my feeling for how we moved as a family against JDM. We got the diagnosis from one place but then moved on to find the best fit for us and that was without question Dr. Pachman and her Team, including Dr. Curran at CMH in Chicago. We then were guided through Dr. Curran to Dr. Soep in Denver. Nothing was coincidence. Granted, I talk big right now especially since Connor is not out of the woods but his getting better truly is due to hard work on his part, having done our Research and then being guided by the best Team we could ask for.

So, my stance today is that I am in awe of the battle mode our two little dumplings have been since birth. NOTHING was handed to Connor and Alexander since birth but they fought since being born prematurely at the 32 week at 3 lbs each. Alexander was diagnosed with Seizures before we got them and even that he overcame and was weaned off after two months of being home. He then had his surgery to repair his spinal cord and Connor followed suit shortly after. Instead of thinking we had this behind us (there is a % chance of the Spinal Cord Reattaching but we always keep an eye on signs for it), we then were thrown into the whirl pool of JDM. After one year and 5 months I think we are once again moving forward.

So if I can ever preach something and hope that it will find an open ear it will be the fact that I want you to NEVER settle for second best and NEVER go with the first opinion. If you or a loved one gets sick then question, do research and PLEASE do not end up in your neighborhood medical clinic just because it is convenient. You can go there if they turn out to be the best in that field BUT DO NOT go their because it is easier. Trust me, if you do and something goes wrong you will always question yourself. On the reverse end if you do everything in your power and you still fail then at least you have the comfort of knowing you did all you could and you lost the fight not because you laid down and gave up. By now I know and I am confident that all four of us in this house will never go down without a fight. It is not in our personality. Like my friend Sonya posted today, Connor and Alexander are little warriors and I think it is because their minds are strong.

So this post is for Connor and Alexander who make me so proud each day and who are the ones who have and still show me what real courage is all about. They are doing this at age 7! I can't wait how they will shake up the world when they have the age and power to do it :)

Never will I be able to put into words how much I love them with every being of my soul.

Hugs,

R A C A

Another but recent memory of the past ...

Today, I got an e-mail from a Lady I never heard from but who is the Director of Special Events for the Leukemia Research Foundation. She contacted everyone who once Donated Money to Henry Declementis cause to raise money for Leukemia Research.
If you were along for the ride from the beginning of this Blog then you know Henry was Connor's first room-mate at CMH in Chicago on the Oncology Floor. There was something very, very magic about Henry as he was even at that point very sick but had the gift to make our boys laugh and even have fun. As to us as parents, Ron and I were so happy to meet Henry's Parents who were a wonderful source of information about the hospital but also showed us the true spirit of what it is like to fight along with your sick child and still have compassion for others and show tremendous composure.
Henry had a lot of set backs since we met and he had several very, very close battles. We learned that he finally found a Bone Marrow Donor Match and the Donor came from Germany. Today I also learned that there were some very intense complications after the transplant and this is one part of the message I got.

"Henry had a tough go of it right after transplant.  He ended up in ICU on a ventilator for 2 weeks!  His lungs were reacting to the donor cells and he wasn’t able to breathe, and he was having tremendous fluid build up.  They used an experimental drug and dialysis and he started to respond.  Unfortunately he lost a lot during those 2 weeks and is now in rehab re-learning a lot of the basics."

So once again I am asking of all of you to take a step back and look at your worries right now. How do they match up to the battle Henry is facing? How well do they compare to the worry and fear his Parents went through?

I am truly so sad and frustrated that once again an amazing, smart and bright child is suffering and fighting for his life while life goes on as normal for most of us. 

We all have something we care about. The cause most likely is different for many of us but how can it be okay for children to suffer and die in our country and millions are spend on wars and paying out big bonuses to CEO's, but the money trickling in for any Pediatric Research is minor compared to other Research programs. Who really is our priority?

Looking at the debate and fight about our children's schools and education we all should realize by now it is NOT our kids who matter. I am sick of this and I know some day we will pay the price for this ignorance and detachment.

Please pick one cause that involves children and give that cause a voice. It is not always about money but we can add our voice and bring attention to it.

Hugs,

R A C A

A look back into the Past ....

I know I should start updating about the last four weeks but I wanted to write about the last two days (actually parts of the last two months).

Last month, Ron the boys and I took on a major road trip. It was my Birthday wish to experience a trip by traveling in a car since we are always on the go by plane. I can tell you it was a most wonderful trip but after driving over 2600 miles it was also exhausting and I think our next trip will be by airplane again :)

Anyway, We went to Oregon to celebrate my oldest US friends 40th Birthday. I have known Brenda since my arrival in the US 18 years ago and she has been a constant to my life. In an ironic way our life even intertwined more when my friend Brenda (who lived in Wisconsin) met my friend Eric, who was flying with AA at the same time I did and was based along side with me in Miami, met at a Party Ron and I had when we had started dating. When both, Brenda and Eric, also came to our wedding they hit it off once again and shortly after our wedding they both became officially a couple. Now they have been married for some years and Eric has since then Retired with AA. A huge bonus to this trip was also seeing Jean again who also traveled in for Brenda's Birthday. Jean, Brenda and I used to work together for Northwest Airlink (Mesaba now), and just as Brenda became my first real friendship here in the US, Jean followed suit right after. The three of us are bound by a wonderful friendship and Thanks to FB we hear from each other even if we did not see each other.

Here is the part why this trip was so important to me. While we were in constant contact before we had our boys we kind of went silent for about 5 years. Ron and I were busy focusing on Connor and Alexander and we made new friends who had children (twins) the same age. We never lost touch but we just stopped talking frequently. By then Eric and Brenda had moved to Oregon and settled down. Brenda, who has always been an amazing Artist became very involved with Pottery and has been very successful. I am always so proud of her and of course we made many memories over time, just as Eric and I did in our years in Miami.
So seeing them again was very emotional and wonderful. The moment we arrived and hugged it felt like we had never missed a beat. We might all have changed in looks a bit but that was it. We had three amazing days visiting, talking, remembering and catching up.

So then, one month later, two days ago to be exact, I get a phone call out of the blue from another friend who I had not seen in five years. Trudi, my precious German Friend who went through the same Training class with AA in January of 1996, called to let me know she was flying into Colorado Springs for an 18 hour layover. Now, Trudi, Lydia, Michelle, Eric and I were all roommates in Miami. Well, to be correct Trudi, Lydia, Michelle and I shared a 1 bedroom apartment and Eric had his own just about next door.

Trudi just left again this afternoon but her visit was the same kind as the one with Brenda and Eric. It brought back memories from a time when I was not a wife or mom. My lovely husband Ron joined our group in 1998 and we all stayed close until Connor and Alexander entered our life in 2005.

Now I LOVE that we are all reconnecting and it is funny and strange to talk to people who have known silly, young and immature me. I ruled my 20's in a way. I was fearless, a bit wild and VERY different from the person the friends who surround me now know. Now I act and of course feel like a Mom, dress like one most of the time (Jeans, Hiking Boots, Sweaters - hey we are in CO after all! now in my 20's the skirts and shorts could not be short enough and a Bikini was always an acceptable outfit in Miami). Now I might even seem or look grounded. My 'old' friends that are reentering my life still know my old self and by just seeing each other again it brings back some pieces of me.

Do not get me wrong! I love who I am today but we fall in a pattern and we forget sometimes who we were in our younger years. It might even be hard for Connor and Alexander to ever truly know who we used to be. We all had a lot of fun back then, where always on the go, loved riding Motorcycles and always loved a good party.
I am not missing the old days but I am so thrilled to now get back in touch with my family of friends. Not all of us had children, so it was natural to pull apart and then of course we all ended up in different States as well.

I am so so proud of everyone of my friends and how well we all turned out. Trudi is still flying and managing a busy home life, Eric is Retired and loves it, Brenda is an amazing Artist and Jean has a most mind blowing carrier with Delta Airlines. It seems I have a gift of finding friends who are smart, beautiful and grounded!!!

So, in the last two months I have turned 40, my precious friend Brenda as well, Connor and Alexander turned 7 years old and I am back in touch with friends who meant and still mean so much to me. A true Gift!


Hugs,

R A C A

On a sabbatical ....

Please know that the only reason I have not posted in sooooo long is not that there is nothing to say, quiet reverse, as so much has happened in the last month BUT I have found no time to sit and write it all down just yet. It will all come sooner or later as I have been indeed busy taking notes.

We had a lot of good and some very sad things happen to us....

Until then remember I am only a phone-call, e-mail or FB post away should you need to reach me :)

Hugs,

R A C A