Thursday, July 3, 2014

A New Chapter


We had a rheumatologist appointment last Friday and we got some very unexpected news…..

*deep breath* We’ve been discharged. 

Dr. S will always be around if we need him but he said in his opinion he thinks Amelia will be fine.  It’s been 29 months since our one and only flare and we’ve been medication free for almost 12 months.  After he told me that he didn’t need to see us anymore I was stunned, he asked if I was sad and I actually kind of was.  He’s like a super hero to me, he healed my baby and took her pain away.    

I’ve made a decision that this is a good place to leave June's blog, it’s time to close this chapter so we can begin a new one.  I won’t shut it down completely and I want any parent to know that if you want to contact me at any time with questions or just wanting to vent, I’m here for you.  Email me at megan.malloy@yahoo.com.  Please don’t ever hesitate, I’ve reached out to many people in the beginning of our journey and it was a huge comfort to know there are people out there that who knew what we were going through.  
We've had a lot of help along the way and I want to say thank you.

Thank you to my friends; Cheryl, Lori, Janelle, Shauna, and Bobbie.  Your support means the world to us and I don’t know what I would have done without it.  You celebrated every milestone with us, cried when I cried, and were (and still are) JuneBugs biggest fans.  I love you ladies.  Cheryl, I will never forget all that you’ve done for us, you’re an amazing friend and I’m so honored to call you Mia’s “fairy Godmother”.  You’ve been a such a blessing to my family, thank you. 

Thank you to my Mom and Dad, you put your entire life on hold when JuneBug was sick.  I can’t imagine how boring it would be sitting in the hospital without Dad to keep me company, watching marathons of crappy reality shows and eating all our meals from the hospital cafeteria.  You were so involved with her care, it means the world to me that you were there with us.  I felt such relief to know that Mom was at home making sure the boys were taken care of.  My heart hurt so  badly that I had to leave them, but I knew Gummy was doing everything she could to distract them from the fact that Mama wasn’t there.  I love you both so much and I'm so lucky to have you as parents.

To the staff at Aspirus in Wausau, St. Joes in Marshfield, and American Family Children’s in Madison: Keep changing lives one patient at a time, every day you make a difference. Thank you so very much for everything you do. 

Thank you to my amazing sister, I would be lost without you.  You were the very first to see Bug come into this world, you were there when we thought we were losing her, and you’ve been there ever since.  You spent Christmas in the hospital with Amelia so I could be with the boys, you were Erik’s Mama while I spent weeks in the hospital and for months after while Amelia was recovering. You’ve sacrificed so much to be there for us and allowed me to have the time I needed to concentrate on getting JuneBug well.  She is thriving today because you love her enough to make those sacrifices, thank you from the bottom of my heart. 

Thank you Amelia, my JuneBug, the light of my life.  You taught me more about life in your first year than I had learned in my 28 years combined.  I never thought an adult could survive what you did let alone a tiny infant, the fact that someone would have no idea what you've been through if they looked at you today is amazing, you are my sassy little miracle.  From the tips of your pink sparkly painted toenails to the crown of your beautiful blonde mop of curls, you are perfect. I love you to the moon and back my Bug. 

And finally, thank you to all my readers and followers, your support has been beyond amazing.  I never thought my little blog to update my family would have reached so many people.  Thank you for supporting us and providing encouragement when I was feeling hopeless.  I will post again if the disease decides it’s not done with my girl, but I hope for our sake you never have to read another word I write.  Thank you for taking this journey with us. 

If in a few months or years you’re just finding this blog know that Amelia is still symptom free and that there is hope for your child, niece, nephew, grandchild, or whoever you know with SoJIA. JuneBug is living proof, there is always hope. 
Thank you from Bug and her Mama
 

Thursday, June 12, 2014

Reconnecting At The ER

Checking out her IV
We ended up in the ER on Saturday night for a bug bite that had turned into cellulitis.  Poor JuneBug’s leg was so swollen and hot, she wasn’t complaining about pain which was a relief but it was still something that couldn’t wait until Monday.  It was by far our least dramatic ER visit we’ve ever had.  A few doctors came in and looked at her leg, took X-rays, they placed an IV (got it on the first try too!) and drew labs directly from the it, they gave us some IV antibiotics and a prescription for 10 days of oral antibiotics and sent us on our way.  June was in good spirits, everyone fawned about what a good little patient she was.  She hardly complained except for when they placed the IV, and even then she only cried for a minute. 





As we’re sitting there waiting for her IV drip to finish a Doctor came in and said “Do you remember me?”  I would love to say that I remember each and every doctor and nurse who has helped us along the way but it would be impossible.  He explained that he was the resident who initially transferred Mia from our home towns hospital to Marshfield where my sister works.  He went on to say that he’s in his 4th year of residency and he just wrote his finally paper about Amelia and her diagnosis!  He had just handed it 2 days before, he was working and was looking at the board and noticed her name.  It was a very unexpected and welcomed surprise to see him again, judging by the way he was interacting with Amelia he was excited about seeing her again also.  After putting all that time writing a paper about Amelia he manages to see her just days after he hands it in, I thought it was really neat J He’s sending a copy of the paper to our pediatrician so we can have it for a keepsake also and it will be published in a medical journal. 


The whole situation reminds me of what a lasting impression Amelia and her story make on people.  When we visit her pediatrician we have nurses and lab techs commenting on how she’s grown and how far she’s come, I’ve had nurses we haven’t seen in forever remember us. 


Two more weeks until our 6 month Rheumy checkup!  I’m expecting a quick and easy checkup so Bug we can be home before noon and have some Mama and Bug bonding time before picking up the boys!

Thursday, May 15, 2014

Dear JuneBug,

It’s been 3 years since you survived septic meningitis and SVT. Our 3 week PICU stay seems like it never even happened; the faces of your doctors and nurses are less clear in my mind, I can’t recall the names of all the medications you were on, and it’s hard for me to even imagine you in that isolet hooked up to all those tubes and wires anymore. I know that you have no memory of what happened and I’m so thankful for that. Instead of being afraid of doctors you’re the cutest little patient.  You lift your arm to have your BP and temp taken, and lift your shirt to listen to your heart without being asked.  You chat with your doctors and tell them all about your little world, you show off your dance moves and sing your ABC’s for them.  You have zero fear or anxiety.   
JuneBug is 3!!!
 
Over the last year my heart has slowly been healing from trauma of that day and the months preceding your illness. I still have pangs of anxiety when I’m confronted with “firsts” that are evidence of you growing up. Your first sleepover, moving into your very own room on the 2nd floor, riding your first bike. You were dependent on me for so long because of your developmental delays and your need for comfort resulting from the chronic pain you suffered for so many months. I have a hard time letting go and watching you become independent. The last year has also brought me so much joy; after weaning from all your medications life finally started to feel normal.  Without the immune suppressing drugs we were able to catch you up on your vaccinations and you don’t spend your Sunday’s recovering from your chemo “hangover” anymore.  You still seem to require more sleep than the average 3 year old but if that’s all we’re up against, I will take it. 
You are growing up so fast, it’s hard to believe you’re 3 already.  Your weight and height are finally within the normal range, you’re just a bit smaller than twin brother.  Your personality is as big as ever, you love being the center of attention and performing for everyone.  You find so much joy in life it’s infectious to those around you, it would be impossible to be in a bad mood while listening to your squeaky little voice singing and watching your chubby little legs dancing and spinning around. I try not to baby you anymore or give you preferential treatment but its so hard when I think about all we’ve been through together. 
Thank you so much for fighting Mia, I can’t imagine what life would be like without you.
Love and millions of hugs and kisses
Mama


The best part of my day
 
 
***Note to my readers: This is my 70th post and we recently hit our 8,000th visitor to our little blog!!!  I know I haven’t been updating much but there isn’t much to update which is AWESOME for us!  We have a rheumy visit the end of June and will post then.  I plan on asking him his opinion on Mia’s prognosis.  I’ve never wanted to know his opinion on this before (not because I don’t care or value his opinion, because I’m scared of what he will say) but she’s been doing so great for almost 2 years now, I have to wonder if her disease is just monocyclic (meaning one cycle and it’s never seen or heard from again).  It’s rare with systemics but it DOES happen so it’s worth asking his opinion about. 

Once again, thank you for all your love and support.  I cherish all the emails of encouragement and love helping families who have questions or need advice. 

Thursday, February 13, 2014

Throwback Thursday

I came across this picture a few months ago, my dad took it on Christmas day 2 years ago when we were still clueless as to what was causing my baby girl so much pain.  My mom brought Christmas cookies for Junebug and I, she hadn't been interested in eating in a few weeks so to see her so excited about eating cookies made my heart a little lighter that day.
 

Last week I went back to the same hospital where this picture was taken to visit a sweet little boy who was having some serious issues. The same hospital where my twin sister, Lindsey, works as a nurse.  We spent about a week there while doctors speculated as to what Junebug might have, they tried a few treatments unsuccessfully and were humble enough to admit she needed to go somewhere for more specialized care.  A few people remembered Amelia and I, I think mostly because of my connection with Lindsey but it was sweet that they mentioned remembering our stay. 

It was a bit of an emotional flashback to be there.  The smell of disinfectant; seeing the tubes, wires, and meds; listening to the beeps of monitors and alarms; remembering how exhausting it was caring for a child in the hospital.  I found myself checking stats on his monitor and looking at the entry points of his IV's just like I would if he were Mia.  I wanted to pick him up, rock him, and try to make it better. 

I was reminded of all the songs that I sang to Mia over the many weeks we were in-patient. One of my favorites is "Can I Stay" by Ray LaMontagne. 

Can I stay here with you
Till the morning?
I am so far from home
And I feel a little stoned
Can I stay here with you
Till the morning?
There's nothing I want more
Than to wake up on your floor

Ever since my experience with Junebug I've felt that working with in-patient children and their families has been a calling of mine, so many nurses and child life workers have touched my heart I would love to do the same.  With 3 children under 6 I may have to wait a few more years for a career change though.  I envy my sister so much for being able to positively impact so many lives every day that she works. 

I can't believe it's been 7 months since our last medication, I feel so blessed that she is thriving and doing well. I don't find myself thinking about her health much at all anymore, my anxiety about it is very infrequent and even when I feel panic setting in I am able to remind myself of how well she's doing and I can usually talk myself out of it.  I feel like July will be here before I know it and we will be celebrating one year medication free.  I know I've said it a hundred times but I just can't believe how far we've come, I feel like the luckiest Mama in the world having her here with me and as healthy as she is.



Tuesday, December 31, 2013

REMISSION!!!!

Friday we had a rheumy appointment and we've officially been classified as being in unmedicated remission!!!!  I wasn't expecting this until next month, I thought that the timeline was the same as medicated remission, 6 months after stopping a medication.  More good news is she's nearing 30 pounds and is in the 50th percentile for her weight and we don't have to go back to see the rheumy for 6 months! 

This was by far my favorite Christmas present this year :) Luckily my family was still here visiting to share the joyful day with us. We ate JuneBugs favorite dinner, had a princess tea party with our friends, and ate lots of Christmas cookies and candy and just enjoyed the moment. 

Cookies for Santa!
I'm still trying to process the news, it's a lot to take in for this Mama.  I've always described her as "medically complicated" given everything that she's gone through, and now she's just Mia, a stubborn and snotty 2 and a half year old. I no longer have to explain why she's tiny and needs supplements, why her skin is covered in pink splotches, why we have to bring a med bag wherever we go, I don't have to plan outings and weekends around a medication schedule, I don't have to deal with the eye rolling from the people at the ER when I bring her in for "just a fever", I don't have to ask new friends if their children are vaccinated before she can be around them. 

It's like a whole new beginning, we can just be us.  A Mama and her 3 amazing babes. I feel like I can breath again.

Of course I have to remind myself that she can flare again but there is also the possibility that she may not.  Regardless, we will celebrate every day with kisses, hugs, cookies, and endless amounts of love just as we have since JuneBug first came home from the hospital.

I will continue to post updates, they may not be as frequent as before, but not having a lot of updates is a good thing.  It means she's growing and learning like every other child, and without pain or medications.  And after writing this blog biweekly for 2 years, it will be nice to take a break and not think about past challenges or setbacks or speculate about the future.  Maybe I will squeeze in a monthly wordless Wednesday with pictures of my beautiful girl :) Either way we will update on all our fun and adventures!



Friday, December 20, 2013

2 Years Post Diagnosis

It's hard to believe that it's already been 2 years since our diagnosis.  This time 2 years ago we were admitted to the hospital in our home town to treat what we thought was a case of pneumonia. 

Little did we know we would be bounced around to 3 different hospitals over the course of 3 weeks, we would be diagnosed and treated for Kawasaki disease, we would spend her first Christmas in the hospital, we would have a bone marrow biopsy to rule out cancer and HLH, we would have a terrifying night where Mia's body temp plummeted to 92 degrees and we thought we were losing her, we would discover that the case of pneumonia was really the disease attacking her organs. 

I think about that night her temperature dropped and it still makes my heart ache.  We had finished the bone marrow biopsy earlier in the day, my dad had left the hospital for the night and June and I were settling down when I noticed she was lethargic.  I felt her head and she was ice cold, I yelled for the nurse who came in and then called for the attending.  They took her into a procedure room across the hallway and had to do a lumbar puncture unsedated, my nurse who had been done with her shift for an hour already sat in our room and cried along with me while we listened to Mia crying out.  She stayed there with me until they brought her back, by this time it was around 2:00 am. We wrapped her in electric blankets and I climbed into the crib to hold her while she slept and sing her our favorite songs.  I had no idea what tomorrow would bring, I was scared the doctors would come and tell me there was nothing more they could do, they couldn't treat when they didn't know what was wrong.

It was one of the most terrifying nights of my life.  In typical Mia fashion she bounced back the next day, you would have never been able to tell something was wrong.  I'm guessing that the temperature dropping was a side effect of the anesthesia used during the biopsy, but at the time all I knew was that she had some kind of undiagnosed illness, she had been sick for 2 months, and this could be her body shutting down.  Three days later we were being discharged with a diagnosis and a treatment plan.  The nurse who stayed with me that night was coming in for her shift as we were leaving and she hugged us and cried, she was worried about Mia all weekend and couldn't believe how well she looked and that we were going home.


JuneBug 1 month post diagnosis, still not feeling the best but happy to be home.
Junebug has been pain free for over a year and a half and we rarely see her rash anymore. It still blows my mind how far we've come, it's like nothing ever happened. The only traces of anything are a few scars on her chest and neck from where they placed central lines.

We are so fortunate to have her feeling well.  So many kids with this disease struggle for years, in constant pain every day.  I know parents who are considering risky bone marrow transplants because they can't find anything to relieve their children's pain, parents who have to face hip and knee replacements for their 7 year olds because this disease has damaged their little bodies so badly in such a short amount of time.  We are just so fortunate JuneBug is on her way to remission, she seems to be one of the few lucky ones. 

This time next month I'm hoping to write a post about remission!  stay tuned :)

Monday, December 16, 2013

Jingle Bell Run 2013!

Thanks to all who supported our team this year!
 
Mia loved our sugar plum costumes!
We had a blast despite it being FREEZING COLD!  We raised $235.00 for the Arthritis Foundation bringing our total funds raised for research to $2,450.00 in only 1 year!!!!!  Thank you to my friends, family, and co-workers for donating! 
 
Junebug is still doing fantastic, we have our checkup next Friday and I'm hoping after this we can stretch our appointments out to every 6 months.  As much as I love seeing Dr. S. it would be nice not to have to take that long drive until it's warm out again.  Wish us luck!