I shared this recently on Facebook and because I want to start sharing and pouring more into my blog for myself and for others I thought I would add it here as well.  

I originally posted this on 01/07/16:

The 1st picture came up today in my Facebook memories. 

I remember this day 3 years ago like it was yesterday. All three of my children were sick and it was miserable. I was a single mom with no job, I had recently moved out of the only home they had ever known and moved in with my parents, and I had not worked since the birth of my oldest daughter, Emma in 2004. I had no idea how I was going to cover the copays for all three of them, not to mention the cost of the prescriptions that they would need. I vividly remember thinking “How did I get here?”.

This is the one where I update you on the Doodle AKA Super Sweet Sophie AKA Bad Ass Crohn's Fighter . . .

If you are new to the HWHAP bog, you can read Sophie's story here.
To get to the nuts and bolts of CD click here.

Sophie was diagnosed with CD when she was 4 years old, the 1st few years were spent out of remission searching for something that would get her into remission - she was on and off steroids and in and out of the hospital until we finally found what would work for her.  Sophie has been on Remicade since April of 2012 (she was 6 years old at the time) and we have had such great success.  She has been in Remission since that time minus a small set back in October of last year (2015) when she was unable to get her infusion on time.  Unfortunately, in October of 2014 she started suffering from psoriasis of the scalp that continued down her neck.  It was miserable but we kept it contained with creams and ointments.  We even upped her Probiotic (ProBio5) and added the Plexus Body Cream and that made it almost disappear.  Enough so that it was no longer an issue for her for almost a year.

But, sadly, it has come back with a vengeance on her face and in her ears which is miserable for her not to mention she is now almost 10 (WHAT?) and there is a cosmetic issue with it being all over her face.  She is self conscious and at the age of ten kids do not really have filters so she feels like she is answering questions about it all of the time and it is making her feel very embarrassed.  Beyond the cosmetics it is itchy, red, and painful so the girl is miserable.

The unfortunate part is that the Remicade is what is causing the problem.  Ironically, although Remicade is used to treat Crohn's Disease, Ulcerative Colitis, Rheumatoid Arthritis and Psoriasis it also in rare cases can cause Psoriasis

We have been working with her pediatric dermatologist and her GI team to try and get it cleared.  We met her with gastroenterologist this morning at Children's to discuss other GI options.  I was nervous going into the meeting because Sophie is doing SO well but her health is very volatile and changing just one small thing can throw her out of remission so quickly.

There is another anti-TNF drug that I was hoping would be an option but we found out today that Humira may cause the same issue and not solve the problem at all.  The other option that was offered was to put her back on Imuran or Methotrexate which did not work for her AT ALL when tried previously but they believe because she is older now and not sick there is a chance one of these could work at this time.  The problem is we won't know until we try and the unknown is incredibly scary.  When Sophie is sick she is very, very sick ---- I am certain none of us are ready to go through that again right now (or ever).  They would start her on steroids before making the change and then we will have to wean her off and take it one day at a time.  The thought of this is terrifying to me.  I have been sick all day.  The knot is my stomach is making me nauseous and I have been unable to eat all day.

There is a newer drug on the market but it is not FDA approved for young children.  Entyvio is another infusion drug but it works differently that the TNF blockers so there is a chance it could keep her in remission and prevent the Psoriasis.  The hospital's youngest patient to be approved is 16 and they were able to get her approved because she is "adult size".  Sophie weighing in at a whopping 40lbs most likely does not qualify but this is the route I am leaning towards if Remicade is no longer an option for her.

We meet with her dermatologist and gastroenterologist again on the 29th at 9a to make our final decision.  They drew labs today to see if she had developed antibodies to the Remicade so we will know more once those are back.  At this moment I am leaning towards trying to get her approved for the Entyvio but I may change my mind a few hundred times between now and the 29th.  Her next Remicade date is 2/1 so we have about until then to decide so that she doesn't get sick again.

Today while talking about the options for Sophie with the doctor and her dad I was looking at him and thinking this is it?  Us?  These are the 2 people chosen to make these huge medical decisions for this small human?  What?  Who thought that was a good idea?  There is absolutely nothing that qualifies us for this.  Who in the world thought this would be a good idea?

This is certainly not about me - it is about her BUT holy hell I feel so overwhelmed and inadequate.  The warnings on each drug are completely terrifying, the thought of her coming out of remission is also completely terrifying!

Life with a chronic disease is always such a fine balance of good and evil.
Or choosing the lesser of two evils.





* Methotrexate can cause serious or life-threatening side effects on your liver, lungs, or kidneys. Tell your doctor if you have upper stomach pain, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes), dry cough, shortness of breath, blood in your urine, or little or no urinating.

* Long-term use of Imuran increases the risk of developing certain types of cancers (eg, leukemia, lymphoma, skin cancer). A rare type of cancer called hepatosplenic T-cell lymphoma (HSTCL) has been reported in patients treated with Imuran. These cases have been fatal. Most of these cases occurred in teenagers and young adults who had Crohn disease or ulcerative colitis. Some patients who developed this cancer were using Imuran along with certain other medicines called TNF blockers (eg, infliximab). Tell your doctor if you have or have ever had any type of cancer.

After 3.5 years of remission - it took 7 days for a full blown flare.  Seven Days.

I am not going to go into what a full blown flare looks like again.  If you are having trouble remembering or you are new to HWHAP - you can read: The Sh*t that is Crohn's Disease here! I don't mince words in that post.

Last Monday, the 12th was her Remicade appointment date but we found out the Friday beforehand that there was a lapse in her coverage and we were having trouble getting answers.  There were words like:  pre-existing condition, pre-authorization and you need to call financial services but ultimately they canceled her appointment and would not allow us to cash pay.  I was frustrated but not OVERLY concerned. #Mistake

I honestly had no idea she would get this sick so fast.  After 3.5 years you forget. You forget how completely awful it is.  It is so awful! I was even brazen enough to allow myself to believe that she would be ok.  Maybe she doesn't even need Remicade anymore!  Maybe, just maybe she can stay in remission without it!  Her doctor has told me countless times that they do NOT take children off of biologics - it just does not happen.  Why would I allow myself to think Sophie would be the exception? I don't know why.  I just know that it is hard, hard to know that your child will need this for the REST OF HER LIFE. It hit pretty hard. Again.  Which seems ridiculous but this disease is ridiculous so I think it is only fair that my emotions can be ridiculous too!

I left Sophie for a few minutes this morning to run to the gift shop and cafeteria.  While in the gift shop my emotions got the better of me and tears started flowing. Being here is hard. Coming through the ER was so hard.  We were in the same room that we had when Nate was diagnosed.  Being back on the GI floor brought back so many feelings.  Just ALL OF IT is hard.  Another mom came up to me and asked if she could hug me.  Not is a creepy, stalker way! She had tears too.  The mom bond is strong.  Being the mom of a chronically ill child somehow, if possible, makes the bond even stronger.   I didn't even get her name, or her story, but I could see the sadness in her eyes too. We are same same.

And now here we site in her comfy suite at Children's Medical Center Dallas overlooking downtown, an IV in her arm -- she is receiving the Remicade that was previously denied and we are hoping this kick starts her little body right back into remission.  She wants to go home and although her doctors wanted to observe her for one more night, they are granting her wish and letting her go home tonight! As long as everything goes well, of course.  She will miss school for the rest of the week as she rests and allows her body to recover.

2.5 years of hell was forgotten in the 3.5 years of remission but it only took 7 days to bring it all back and now I am hoping 7 days to get her back into the remission bubble.  It may take mommy a little longer to forget and will certainly take a while for the guilt to go away.   This sweet girl pays the price when things go wrong, when balls are dropped, and denials are made.  It hurts every fiber of my being to see her suffer.




This girl though is fierce, she is a fighter, a warrior and she will warrior on.
I am so honored to be this warrior's mom.  #SuperSweetSophie #CrohnsFighter #WarriorOnLittleOne

Thank you all for your calls, texts, and messages!  Thank you also for always allowing me to come here when times are tough.  When things are good I easily forget what comfort I find here, it is nice to always be able to come back when it is needed.