A new Chapter for us!!!

To say I am happy or thrilled would be an understatement! We just got Connor's latest blood work in after his discontinued use of Methrotrexate. The email I received from Michelle was truly the beginning of a new chapter.

Thank you to the amazing and talented Medical Rock Star Team that looked out for Connor in the last 5 years (or close to it).

Thank You to all the tireless work of each therapist, PT, OT, Speech etc etc.

Thank you to all the friends who kept sending love and support even when I was at my most angry and heartbroken state.

I admit everything I look at at our past starts with:

'Before JDM we ……'

'After JDM we…..'

There is no denying all 4 of us are different due to this disease but while I often looked at the things we lost I am also looking back at every step that made us more aware and educated. 

The fear will never leave me completely since he is not in remission yet and since there is no Cure yet.

So here are parts of the e-mail I received this am:

Hi Anke,

I just wanted to let you know that Connor’s labs look great!!!! His aldolase is still pending but his CK and LDH are perfect!!!  I assume that these are the lab that we discussed getting 3 weeks after discontinuing methotrexate?  How is Connor doing?  How is the start of his school year going? 

If everything is going well, we can continue without medications.  We should check his blood tests in 3 months or sooner if he has any symptoms of rash, weakness, etc. …...  If Connor has ANY return of symptoms or you have any questions or concerns, you can reach the rheumatology nurses at xxx-xxx-xxx and they can get you in touch with Dr. Soep. 

I am so excited for him!!!!! Have a great fall!

Michelle

Memorial for a little Classmate...

This morning the boys and I went to the Memorial for sweet little Elina who passed away 2 weeks ago at age 6. 

I would lie if I said I knew the Family. I know I met them during school events and I remember precious Elina from last years Christmas Play where she played a little lost Angel.

We went this morning due to the boys asking me to take them. The Church where it was held was packed and it showed how loved this Family is by the Community. 

I admit I think another reason for such a huge attendance is also due to nothing shaking up a  Community more then the death of a child.

 I would not have gone if it had not been for the boys. To walk into the church and see this tiny casket is just wrong on every level of my being.

Considering our family history it is even more so a hard pill to swallow when listening to the supposed gift it is that she is now in heaven. To hear she is happier now then she ever was... that this is a reason to celebrate and that the grieve felt now is only a sting that is a very short temporary event....

I sat there being grateful in the Families strong believe as I hope this will indeed carry them through this horrid time.

I can't imagine a greater pain, plus I would imagine it to last every minute, every hour, everyday until I took my last breath. If in temporary they mean life, then temporary would mean years and years unless my death came shortly after that of my child.

Connor and Alexander were very upset when we left. Connor said the pain if he lost Alexander would be way worse then a sting. He told me he would feel as if someone took out his heart....

So again I wonder how we can be so different in not seeing the supposed comfort?

My wish to this beautiful family is strength and peace for the coming years.

Surgeries, Therapies and end results ....

We are so thrilled and happy to have been told today that everything looks great and that the boys will no longer need PT and can be off and running on their new feet 😊

So four months of casts, boots and therapy are finally at their end, just in time for school to start. Once again I am beyond proud of the boys for the work and effort they put in and their determination to get better. Brave souls as always!

Hugs,

R A C A

Taking Stock... Medicine Free and traveling

I wanted to write in here the day Connor received his last Methrotrexate Shot on July 12, but for some wicked reason I couldn't. It was as of I did not want to jinx anything and in a way I have been holding my breath for the last 11 days.

For a week following the injection I kept giving Connor the Prevacid and Tums to balance out the shot but since Monday we stopped even that.

I can not tell you how happy but scared I am at this point.

 5 years in the making!

 5 years of not knowing if he will ever get to this point or if he will take a turn for the worse.

 5 years of our life's being impacted in so many ways.

 5 years of all of is changing. In some good ways and in some bad ways.

 5 years to take stock of how we fought this fight and if it was the right way... 

Now on a medical perspective I have extreme self confidence that we moved in all the right ways! 

On an emotional level we all are atanding here with lots of scars on our hearts and souls.

Tne anger and helplessness towards JDM never left me. I do not see a silver lining in watching my son fight this disease and crying through the pain.

Yes, of course we made wonderful friends that will be a part of our life for life. We also lost many friends. I faced complete disconnect towards people that I thought were important to my life before JDM.

Also my faith was put to the test. While so many find comfort in turning towards a Religion I found out that my faith and comfort turned and now comes from science. I guess in a way everyone needs to believe in something.

So the true test of faith comes in 2 to 3 weeks when Connor has his first bloodwork taken after stopping his medicine. 

As to us as a family we are wounded but we are still fighting. We are now trying to repair the wounds we had inflicted and making amends for the wounds we caused. We are all in Therapy at this point and I admit what felt like a weakness turns out to be the key towards healing.nit takes strength to realize we need help.

One of the gifts we have our selfs this summer was the gift of travel. We spend close to 10 days in Florida, playing in Miami, Fort Lauderdale and Orlando.

We then drove to Chicago to watch Niki Graduate from the Navy's Basic Training Program. On the way back we toured St. Louise.

Shortly after that the boys and I drove Niki's A3 Audi to California from Colorado. There we toured and biked along the South Rim at the Grand Canyon. We toured Big Sur and hugged tne huge Red Wood Trees. We then spend two amazing days in Monterey CA were we played at the beach with Niki and her friends, plus toured the Fishermens Warf and the Aquarium.

So we played at the East Coast and the Atlantic. We played in the Mid West through Nebraska, Iowa, Illinois, Missourie and Kansas. We finished up with New Mexico, Arizona and California and the Pacific. We swam in both oceans and it was pure heaven. So you see the healing has begun ....

Hugs, and thank you to all of you who survived the last 5 years with us and are still there! I don't think tne journey is over but we made progress!

RACA

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