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Wednesday, March 19, 2014

I Don’t Know How You Do It!...You are So Strong…

I have heard this quite a bit over the last couple of weeks and it has made me really think…  How do I do it?  Because sometimes I don’t “feel” very strong… 

As I reflect over the last several years…hold on a second, let’s be for real here…we are really talking about the last SIX years; I feel a rush of emotions… Some of you will read this all the way through…to understand…but some may not…because it is “just too hard”…but I encourage you to read on… to get a glimpse into “how I do it”…  to understand a mother’s heart while raising a child with chronic illness…

At times, I am angry…my son has been enduring intense daily pain for six long years; my son has missed out on kid stuff (my own mom just reminded me of this yesterday, when she realized, because of an article she read about the hospital Parker is treated at, that my son is being treated right alongside kids with cancer …oh how that got me to thinking)…while other children are going to school, my son is home learning algebra from virtual school…  while his classmates are playing sports, my son is doing physical therapy…while his friends are beginning to “date”, my son is home trying to find a friend who will talk to him on Xbox…  While his friends plan field trips, he plans trips to the blood lab…

And…I am sad…while his peers are going to high school events, my son is doing shots and infusions every week…while his friends are growing taller, my son has not grown since 3rd grade… while other moms say good night, I am turning on my son’s breathing machine and praying… as kids ride their bikes and skateboards through the neighborhood, my son wheels his wheel chair…  while others are out and about doing “daily life”; we have spent many days at the hospital…

And I am frustrated…while his friends just go to the movies and snack, my son cannot take food into the movies nor eat what is there because of his allergies…while other moms are planning fun outings and events, I am on hold with the insurance company, drug company, medical scheduling…while other kids plan sleep overs, my son plans hospital sleep studies…

And I am exhausted...  my laundry is rarely put away; my medical to-do list grows every time I think I have everything crossed off; surgical appointments keep me awake and I fall asleep just as my 5:00 AM alarm goes off…  And I work, 40 long hours a week all around this crazy schedule…that is exhausting to the max!

So, I ask myself…how do I do it?  I do it because I MUST.  I do it because I love my son so very much.  I do it with faith and hope and because I am scared that if I pause…I just might just break.  But I know I won’t, because I am STRONG!  Even at my weakest…I know that I am strong…

And I am strong... because I have this young boy who is stronger than any “strong” that I could ever know…  He has faced this disease head on…fiercely, endlessly, and has fought with all his might for his life.

And I am joyful…because my son knows how valuable life is…he sees the good in people all around him…he spreads love through his simple bright, never-ending smile… My son, this young old soul has wisdom way beyond his years…  He gives back to so many, without hesitation…  And in those brief moments that he has the physical strength, he lives life to the fullest and seizes those moments with so much passion that he fills me up with his energy making me believe that anything is possible.

I have such a gift…my son is with me.  There are families…families we know…who have lost their battle to this disease… and I will always and forever cherish ever single moment with all my love and might and will never ever give up the fight.  Logan, Michael, and I do it for him and every family who is strong, because they must be!

Saturday, March 1, 2014

The Gift of Life, Love, and Purpose

Every single day is a gift!  In the spirit of “Rare Disease Day” (which also happens to be my
grandpa’s birthday); we unwrap every gift before us with new wonder.  

A very cold, fatigued kiddo
during walk kick-off
Walk Team Page:  Join Parker's Team (click here)

This week was way busy with much reflection; and we feel certain that we are blessed with Parker’s very wise, compassionate doctors.   And this week we had discussions with 4 of his docs.  We feel like we are on a good path and that Parker has a voice in making decisions.  Needless to say, the decisions continue to be difficult and choices no child should ever have to ever consider.  And yet, Parker does …and he weighs it all out with more wisdom than many adults.

We had our walk kick-off this week and one of Parker’s docs spoke.  Her presentation sparked many thoughts for us.  She spent some time chatting with me after the presentation and helped explain some pieces of the “Parker puzzle” that we never quite fit together.  One of Parker’s meds, methotrexate (a chemo drug), was discontinued during a hospital stay a little less than a year ago.  He was switched to prograf, a drug usually prescribed to help the body not reject organ transplants.  We haven’t heard of any other children on this drug; and we are pretty connected in the “JA world”. 

So, I inquired why this drug is being given to Parker.  She said that it was because he was in MAS at the time.  For those of you not aware of what MAS is…it is pretty much every family’s nightmare that has a child with systemic on-set juvenile arthritis.  We knew that Parker was on the verge of MAS a couple of past hospital stays but we didn't know that he was fully in it and that was why prograf was chosen…and if we were told at that time, MAS was not the word used.  However, thinking back on that hospital stay, it definitely was an intense stay and he was very sick and they did explain the reasoning behind using prograf.  And I think that the doc was probably trying to keep me calm and protect my momma heart.  I definitely was hearing white noise and felt like I was in a fog as I tried hard to focus on her words and focus on my reaction and stay calm.  This is when trust is the up-most importance, because your child is witnessing so very much alongside of you and prayers become your constant inner voice.  For those of you who don’t know what MAS is, it stands for macrophage activation syndrome.  It is severe, dangerous, and life threatening.  It is the number one cause of death in kids with systemic JA.  Here are some links about MAS:





In addition to our walk kick-off, Parker endured two rounds of sacral nerve ablations.  He has two more rounds next week to complete the series of 6 for the sacral area.  This last round was pretty tough on him.  He is a strong little tough warrior.  He was then going to move on to the lumbar region; but we need to stop for a period of time to deal with some endocrine issues first.
The endocrinologist called and his labs and bone-age scans showed that he needs further testing.  So, we are scheduling a day long test day at the hospital to proceed with testing for possible growth hormones.  The “good news” is because he has not yet hit puberty and his bone age is “younger” than it should be, then he could potentially get growth and puberty hormone with good results.  So we are actually hoping he “fails” the day long tests, so that he can get help.  Yes, you read that right.

At first I was upset to hear about another round of “bad labs” but after seeing the rheumatologist Thursday, she explained things in a way we could better understand and that this could really help him.  So, we are going to stay in that mindset and hope for the worst to get the BEST!
Michael and I are pretty exhausted these days.  We are just trying to keep all the balls in the air and if one drops…we hope it is one that we can just do without and let roll away.  So much that is happening is movement in the right direction, it is just constant.  And there seems to be a domino effect.  And then there are my health issues and Logan’s health issues that also need attending to; we must remind ourselves over and over that we can only do what we can do in a day.

WWW.HIGH-5-CLUB.ORG
And we also must remember those precious gifts:  Parker is off of prednisone after 4.5 years and he is off of morphine after 3.5 years (one of his narcotics).  Parker re-started an on-line virtual class yesterday; and he is determined to not look back and to continue moving forward…wherever it takes him.  He is pushing through his pain and walking more and using his wheelchair less.  He is excited about his and Sadie’s High-5-Club; and they
Sadie and Parker deliver High-5 Care Kits
delivered their first set of High-5 care kits this week and can’t wait to do more!  Our family and friends’ encouragement and love continue to lift us up and power us on.  Our lives have purpose.  We have faith in what is meant to be will be… and it gives us peace and hope for the future.

 

Saturday, January 11, 2014

NIH Status and Other Updates

Well, I am just going to be straight forward…there is no NIH (National Institute for Health) in Parker’s near future.  Although his doctor made every effort to get him in and even though she talked to the lead doc there, it seems that because of the 17 week long government shutdown, they are now very backlogged.  They are only taking kids that fit criteria for one of their studies.  She did ask the doc to ask other docs if anyone would be interest in a “very unique” kiddo; so he is posting on their JA doc groups. 
Parker was quite upset with this news; we are, however, please that Parker’s health has had some improvements.  His lungs have improved and pulmonology is happy that capacity is increasing.  And he has not had any other internal organ involvement in quite some time.  For this, we are incredibly thankful.  He is still in incredible pain; having skin issues off and on (minor vasculitis, rashes); fevers come and go but are not as high; and he has some joint swelling, but ankles are not as constantly huge as they use to be.  We do feel that the Rilonacept has slowed the progression of this disease.  And we are pleased with this drug in combination with prograf and his hizentra weekly infusions; it seems to be a pretty decent combo for him.  Of course, we wish it was even better, but we are pretty pleased with the progress because it has kept him out of the hospital and he has had less illness.  This is a huge blessing.
After a mini battle with our health insurance, we got Parker’s foot orthotics approved.  His left ankle has turned down towards the ground quite a bit, despite PT and his current orthotics.  So he is upgrading.  At first, the insurance denied the new orthotics saying that only diabetes patients qualify…but we are so thankful that we were advised years ago to ask for a “case manager nurse” with his insurance.  Plus, I am pretty darn persistent.  So after calling her and pleading, she advocated on his behalf and they were approved.  I advise anyone raising a child with chronic illness to ask if your child can have a case manager nurse.  It really helps to have one individual to talk to at the insurance company who knows Parker’s case.
Parker is now seeing a local pain management doctor (this is doctor number 13…jeeze louise).  He is totally on the same page as us and wants to work on getting Parker off the narcotics and use other routes to help with pain.  He did two rounds of tests with him and it looks like he is a candidate for nerve ablation.  We are seriously considering this for his back.  For the first time, in about 5 years, Parker had zero pain in the area the tests were done and it held for about 4.5 hours.  He told this doctor through tears, "thank you for the best Christmas present ever".  Of course, the doc and I got all teary with him.  We are also going to discuss his ankles further because his rheumy is wondering if botox injections in his ankles would help.  Through PT, he has had much improvement but his range of motion is still quite limited due to the destruction that has already occurred in his ankles and she feels botox might help.
 
As for a quick “Logan update”, his JA (spondy) has progressed some but is still somewhat manageable.  We have not had to add biologics.  He is on Celebrex and after discussion with the rheumy, he has decided to try adding plaquinel.  First, we need to get him in to the eye doc to get a baseline on him and also to look at his eyes because he gets some really bad reddening in them (especially just prior to, and sometimes after, migraines).  We want to get the ophthalmologist’s blessing before starting this new med.  Right now, this kid walks around with salanapas patches on his joints…it is just not cutting it.  The doc feels that he too has some mild vascular stuff going on…and we joked that it seems to just be one of those weird family issues.
So in closing, we are so very proud of our two boys.  Logan continues to push through dual enrollment and loves his college classes.  And Parker is juggling massive amounts of medical appointments…Yesterday, he went to PT even though he felt miserable (a little concerned he might be sick)… On the way home from PT, I think Parker summed it up best when he said “I am who I am, and I am really strong!” 
 

Sunday, December 15, 2013

High-5 to Parker and Sadie for Starting High-5-Club!

Parker is now 14 years old.  At 8 years old, systemic on-set juvenile arthritis settled in his body and changed his life forever.  During these past six long years of blood labs, scans, tests, procedures, surgeries, 12 specialists, infusions, therapies, counseling, research studies, medications, acupuncture, educational plans, shots, orthopedics, hospital stays, equipment, and more, (whew…that’s a lot) we have been on quite the journey.  We appreciate our many blessings, our huge accomplishments, many new-found friendships, family togetherness, and life just a little bit more intensely than before JA.  On this journey, we have encountered kindness, strength, love, and incredible little people who challenge this disease each and every day.  But Parker met one very special “little person”, Sadie, and they are now forever friends.

Parker met Sadie in the infusion room where both endured many days together getting treatment.  They quickly became great pals because they understand each other.  They cry together, laugh at things that only children with chronic illness would find funny, and continually uplift and encourage each other.  They quickly recognized they were not alone in this journey.  So, they decided to help all kids battling chronic illness know that they, too, are not alone.  So four years ago, they began helping uplift other kids.  They celebrated their birthdays together by collecting treasures for the infusion room in lieu of birthday gifts. Then, they collected food and gift cards for families in need, but they wanted to do more.  So they officially started their non-profit called “High-5-Club”, a 501(c)(3) #23-3186664.
Why High-5-Club?  Well, they joined a sort of “JA Club” when they got diagnosed and yet, good can come from difficult situations….So, High-5s are a fun, quick and easy way to encourage other kids and their families.  Families enduring chronic illness are on a constant, chronic journey filled with unknowns and heartache.  Parker and Sadie have great big hearts and they want to encourage and recognize that all kids are incredible and deserve tons of love and great big high-fives!  So, Parker and Sadie began working on their “High-5-Club” (www.high-5-club.org), with a little help from us moms, and launched it to the world this month. 
What is High-5-Planning to do?  Our first High-5 goal is to boost the morale of families dealing with chronic disease by teaming with hospitals to distribute “High-5 Care Kits”.  These kits include pre-paid food and gas gift cards to help offset the cost of getting to and from medical appointments and treatment. After surveying families, approximately $150 on average are spent for each visit for medical treatment.  Medical treatments occur anywhere from every two weeks to 3 months, with many families going to monthly appointments.  And the more medical specialists a child has on his/her team, the more out-of-pocket costs add up.
As funding support grows, Parker and Sadie have four additional goals for High-5-Club:  The “Up High! ” Campaign (children encouraging other children), Social-Emotional Support (a webpage with resources and materials), Micro-Grants for Alternative Treatment, and Pediatric Fellowships.  These goals were chosen because we are trying to fill a gap in funding to meet needs of children with chronic illness and their families.  Parker and Sadie are kids on a mission and are very excited to share their joy with all of you.  
Many of you have already begun to ask about High-5-Club and how you can support Parker and Sadie.  There are several quick and easy ways you reach out and give “High-5s”. 
·   One, you can go to our Facebook page (Click here to go to our Facebook Page) and “like” High-5-Club; so you will get updates on what is happening and to reach out and give children virtual High-5s for the amazing things that they do. 
·  Two, you can make a High-5 donation by going to our secure website at www.high-5-club.org or by sending a check to High-5-Club, P.O. Box 621044, Oviedo, Florida 32766. 
·  Three, you can let us know about a company or program that might want to partner with us or match funds we raise. 
·  Four, you can share this information with your friends and family to spread the word and help us raise awareness that all kids need “high-fives”. 
·  And five, you can post High-5s to other children by using our “high-five” pictures on our Facebook Page, or by sending a High-5 encouragement card (on website soon) and let them know how amazing you think they are and why.

High-5 to Parker and Sadie!  We love you!

 

Sunday, November 3, 2013

An Update on the JA Journey…

Update on Parker…  last Friday, Michael took him to his rheumy appointment as I was told I really shouldn’t travel due to my Grave’s Disease.  His doc is about 2.5 hours away.   I phone conferenced in.  The good news is that his joints looked less swollen and his hands had better color.  Parker shared that he is working hard with the physical therapist and that he also thinks that the acupuncture is bringing some relief.

The not so good news is that he is living with a chronic illness and it is by definition, chronic.  It is a daily battle.  The doc paid some extra attention to his left ankle and foot and even called over their PT to look at it too.  She believes that he needs to now see a podiatrist because his ankle has turned in so very much that it is almost hitting the floor and his foot turns out.  It makes me so very mad that no matter how hard we continue to fight that this disease rears its ugly head.
We do believe, however, that we have slowed it down.  The doc said that his blood work looked ok.  Only his vitamin D is still very low (this can cause pain in itself…the symptom is feeling like bones are breaking and anyone who has broken a bone, I am sure you can relate).  So we are doubling his D.  His pancreas is not processing correctly and his insulin is high, most likely due to long term steroid use.  But his other organs seem to be doing ok.  We are thrilled that this disease is not attacking his heart or lungs anymore.  And because the combination of Hizentra (IVIG), Prograf, and Rilonacept are likely the reason for this (in addition to so many positive vibes, prayers, and hard work on Parker’s part) we are not willing to stop Rilonacept yet…it is not stopping the disease but it is doing the best yet as slowing it down.  So Parker’s doc is going to work on the “over-ride”, once again, to get this drug approved for him.  We love her for persisting for him.  He is the only kid in Florida being treated with this drug for systemic on-set juvenile arthritis.  Thank God it has been approved for him.

So, now that he is officially out of school, we are working hard on focusing on what he needs.  This is quite the balance between our work schedules and medical appointments.  But we feel strongly that we must focus on Parker’s health…and we will never give up.
So, the new game plan is to up his physical therapy to three times a week, continue acupuncture, add massage therapy, get new orthotics to help his ankle/foot, increase vitamin D, continue to work with his ten amazing docs, get his wheelchair adjusted, and work with a new pediatric pain management doctor to try and continue to decrease his pain meds.  He is almost off of his tramadol…what a huge step… and he is down to 3 mg of predinose.  We are so thankful for the baby steps forward that he is making.

Michael and I are aware that this disease is going to be a lifelong journey.  We discussed this a bit with his doctor.  And we are all truly happy for his bit of progress.  She is now trying to get him into the National Institute for Health (NIH).  We are fortunate that she knows the lead doctor there and she is personally calling him.  She will be the doctor continuing his treatment but NIH may help lead us in needed directions through genetic testing; again, another huge blessing for our purple playa.
I know this is Parker’s blog for updating…but we are now watching Logan’s JA progress a bit.  It seems that if he does a lot on his feet then his ankles swell.  He is also getting more migraines and the rheumy thinks that it might be one of his meds; so we are making a switch.  We are hoping that the switch helps with not only his migraines, but his swelling as well.  He has needed two infusions these last two weeks.

So it’s a balance…between both our children’s medical needs, along with my own.  My husband is an amazing individual and helps us all.  I love him dearly for that.  So our hope is that NIH may not only help Parker, but our whole family because we have such a mix of autoimmune issues.  Thank you to each of you who continue to check in on us and support us through this journey!
Much Love!

Friday, October 11, 2013

Choices That No Child Should Ever Have to Make

I will sleep good tonight…what a week.  I could barely drag myself through work this afternoon…and before I retire for the evening I just want to update everyone on our Purple Playa.  He is the strongest individual I know.  He has endured so much in his 14 years and I marvel every day at his ability to push, encourage others, and show so much love.

He is once again faced with such challenges and difficult choices.  Today, we officially withdrew him from school.  After having a conversation with his doctor, we felt that this was the best decision for where he is at and he is going to concentrate on his health.  This was as much his decision as it was ours and the doctor’s.  But even though this was the choice he made…it doesn’t make it easy.  He is, of course, keenly aware that he will not graduate with his classmates and will be re-entering the ninth grade next year.  He tried with all his might to go back to school this year, but his systemic disease has just been too hard on him and once again he is absent more than he is present.

This week he started acupuncture.  It was quite painful when the doctor put needles in his ankles and we thought he was going to give it up.  But then Parker suggested to maybe try a different location since his ankles are his worst joints.  The doctor, who is both an acupuncturist and pediatrician, was so thrilled that he was willing to try again.  She then went into his back and also added electric current and heat and he really liked it.  We even noticed that he seemed to have a little more energy that night and next day.  He will continue to get weekly acupuncture and we will see how it goes, be we are hopeful that it will help his pain.

Sometimes, I wonder if the Rilonacept is working well enough anymore, but it has been the best biologic he has tried.  As we are adjusting and reducing some of his meds, it has been quite hard on him.  He has so much pain and is incredibly fatigued.  He is also having his rashes and fevers again, a classic systemic JA symptom.  I just hate how this disease seems to outsmart the drugs.  We have also increased his PT from once a week to twice a week.  And we hope to continue with some auqua therapy, if we can get in a heated pool with the winter months coming up.  We are still researching heating our pool or getting a hot tub.  And he is periodically going to counseling.  The counselor has a gift for helping him process all that he is going through.

We are considering bringing him to NIH (National Institute for Health) in D.C.  We discussed this a bit with his doctor and it feels like this is possibly the next best option.  However, with the government shut down, there is little we can do right now.
 
We are doing the best we can to support our “purple playa” and I know he so appreciates everyone’s encouragement.   Tomorrow is “World Arthritis Day”!  Please share with someone that children endure this disease and for Parker, it is not just in his joints, but it also tries to attack his internal organs.  We continue to pound at JA and we continue to hope that one day, he will be without pain.


Wednesday, October 2, 2013

Birds of a Feather Flock Together

Today I was asked, “How do you handle taking care of a son with chronic illness, while you have chronic autoimmune issues yourself?”  Of course I answered with the courtesy that I can usually muster up for such incredibly difficult questions…”I just try to take it one day at a time…and cherish each and every moment.”  But now as the day is coming to an end…I don’t think I am “handing it” very well.  How does one handle such heartache…besides praying and trying to cherish life.

My body literally tremors these days.   Yesterday, I was told that it is due to my two newest diagnoses.  I have both Graves Disease AND Hashimoto’s Disease.  Of course I asked the endocrinologist how in the world I could have both since they are pretty much opposite of each other…Graves with hyperthyroidism and Hashimoto’s with hypothyroidism.  She said that it happens and the two diseases have probably been battling inside my body for quite some time and Graves is currently in the lead.  No wonder I feel so horrible…now for those of you who have seen me lately, yes, I hide it well…but let me tell you …the way I feel inside is a complete battle.  My heart rate is way rapid and also irregular at times.  I am sweating like crazy.  My hands and legs have been having tremors and now my head also tremors off and on.  I am incredibly fatigued.  It is causing my glucose to be high and I also happen to be anemic.  My eyes have had some issues too with floaters, blurriness, blacking out in one eye, and muscle pain.  Walking has also become more difficult.  My muscles are quite weak.  And I am having trouble swallowing, difficulty breathing at night, and difficulty with projecting my voice and my RA is flaring…likely all due to the battle in my body. 
The doctor spent quite a lot of time with me and my husband explaining that my immune system is very compromised and that I am very likely to have more autoimmune issues down the road; especially since I already have multiple autoimmune diseases (severe allergies, asthma, endometriosis, rheumatoid arthritis, Raynaud’s).  She was concerned but felt that she could help me.  So that was very reassuring.  I am now proceeding with a radioactive thyroid uptake over a 24 hour period.  So I go in for the first scan…then back 2 hours later, then 6 hours later, and again 24 hours later.  The pulmonologist and the endocrinologist both think that my thyroid is now pressing on my esophagus and that could be causing the swallowing and breathing issues.   Once we get results, then we can move forward.

And as I read up on my newest of autoimmune diseases today, I ran across a reference to autoimmune diseases as “birds of a feather flock together”.  I read it out loud to my husband and we both just laughed.  So how do I take care of me….I have tried several times to take time off from work for “me” only to have something come up that needed my immediate attention…and I did’t get that “me” time.  Well, tomorrow is going to finally be my “me” day (after I get more labs in the morning).   And I am looking forward to it!