Life is Precious...Love Each Moment and Each Other

A week in the life of the Lentini’s…Michael and I begin each week with comparing our work schedules and we map out who can be “on call” each day of the week.  We never know from day to day when Parker will need to stay home or go to the doctor.  We both have full time jobs and we are fortunate to be able to work out of our homes when we need to but it’s really been difficult.  Both of us are hard working and we have pretty high standards and good work ethic, so this shift in “how” we work has definitely been trying.  We have learned how to “tag team” and to be flexible with our work hours, but it is totally exhausting because often times, when the kids go to bed, we are back at work on our computers either checking emails or trying to meet deadlines.  And for those times when neither of us can get out of an event or meeting, my aunt and uncle (who are retired principals) come to our rescue to be with Parker.  We are eternally grateful to them.  And we are so fortunate to have understanding staff and employers.

Parker has missed an enormous amount of school and often times, when he does make it to school, he bottoms out and we get a call to come and pick him up.  He is trying but some days are so incredibly painful and he seems to be constantly fatigued.  He has been taking steroids at pretty high doses since May and yet he still has visible joint swelling.  The JA seems to be progressive and persistent.  Just when we think, things might turn the corner and get better, the JA seems to progress again.  He is either resting or doing make-up homework most of the time.  I work when he rests and then when he is able to do homework, I often have teaching to do or motivating J.  I am learning my history (since it didn’t really stick the first time around) and I am listening to/reading aloud some wonderful literature.  At least they pick some really good books at his school.  Math is same ‘ol same ‘ol... but we do have different ways of getting to the same answer.  Science is definitely the most trying… And Parker seems to have our “work ethic” because as much as he struggles physically, he somehow gets the work done and makes excellent grades.  He made all A’s and B’s for the second time in a row and he has definitely been absent way more than he has attended school.

And then there are the medications…not only is there are ton, in various forms, at several time intervals, but some have to be “compounded”.  You see, Parker also has allergies, one of them being corn.  Corn is used in medications either to sweeten them or to bind them together.  So, four of his medications have to be specially compounded at a specialty pharmacy and one of them is simply acetaminophen…yes, you know, like Tylenol.  If we could buy this over the counter it wouldn’t be nearly as costly as the $54 we spend on his “Parkernals”, as we call them.  We figured that they are made for him so why not name them after him….And then it’s always amazing to me that we have to give him some of his meds because his necessary meds cause something else…  And then there are Friday nights.  Oh how we hate Friday nights…shot night (all our JA friends can definitely relate)…yes we have to give him his injections…We have to give them on Friday nights because they make him miserable and so this way he is home with the side effects of headaches and nausea, instead of being at school…but he still is doing his “homework” through all this…  The side effects from these meds would probably put most adults to bed…So to give you a sense of the craziness around his medications, here is the “list”:

1. Advair 100/50 – 2/day
2. nasonex – 2/day
3. Saline (Not only for allergies, gets lots of bloody noses) – 2/day
4. zyrtec 10mg
5. acidophilus (to combat side effects…)
6. acetaminophen 500 mg (every 4 hrs)
7. naproxen 375 mg. – 2/day
8. tramadol 50 mg (every 6 hours as needed…needs big time right now)
9. Albuteral inhailer (as needed)
10. xopenex nebulizer (as needed)
11. colace
12. Lidocaine cream (for numbing injection site)
13. Predinsone (10 mg. daily for past 3 months now…but previously was at 20mg)
14. Methotrexate injection (1cc…this is a chemo drug, but at lower dosage than for cancer)
15. Remicade Infusion (just started a week ago, get 2^nd IV this Fri. When this started, we stopped enbrel injections), with pre meds of acetaminophen, benedryl, and solumedrol (in case of a reaction)
16. Folic Acid (methotrexate depletes this in the body, so he has to take it weekly, 24hours after shot)
17. Omniprozel 20 mg
18. Epi-shot (on hand if needed for allergic reaction)

And then there is the “balance” we try to maintain, for ourselves and for our other son.  We are determined to keep life as “happy and fun” as we possibly can.  Logan plays the sax and he takes weekly guitar lessons which he is truly gifted at and he loves to skateboard.  And now he has begun to also volunteer at the Arthritis Foundation on Friday evenings.  He is so compassionate and caring and we are so proud of him.  He made all A’s yet again…that’s his trend and we couldn’t be prouder.  He loves to learn.  We don’t pressure him at all…it comes naturally and we are so incredibly fortunate that we have two children who have drive and a true love of gaining knowledge.

Parker is learning how to “balance” his own life.  A child should not have to worry  at all about balance…a child should not have to endure pain and learn how to push and breathe through it…a child should not have to think about the “consequences” of having fun…and then there are people who try to give us well-meaning advice without really knowing what we are going through… we do let Parker play when he is feeling good (and that’s when people think we are out of our minds when we say he is pain a lot)…and he does play, but then he sleeps and sleeps or cries and cries because of the swelling and pain it causes.  The only thing he has played this weekend is video games because of what happened when he played outside last weekend.  He skateboarded with his brother and friend…so for about 10-15 min. intervals off and on, adding up to maybe 45 minutes total he road his skateboard.  By the evening, he could hardly walk and he said, “I loved having fun with Logan, but why do I have to pay a price of pain?  I think when I get to heaven; I am going to have a polite talk with God about kids with arthritis.”  What does one say to that?  I just listened and hugged him.

Life goes on…it continues all around us regardless of what we are experiencing.  So we appreciate the little things…And although our house is a complete mess most days and sometimes we are pulling our clothes out of our laundry basket to wear…Michael, the boys, and I have each other.  We love each other dearly.   We have our “inside jokes” and we treasure life’s gifts.  And when it gets tough, we might cry together and then hug away the tears.  We live moment by moment and love each moment together.

Latest News…New Med...New Hope

Well, I have been avoiding putting into words this last week’s events.  The purpose of our blog is to raise awareness around juvenile arthritis and we very much want to do that, but it is also hard to put into words what we have been experiencing.  The emotions have been from one extreme to another, but continually felt with love.  Our fear that Parker might have lymphoma was very real and yet, through it all, we were always hopeful.  Parker was aware of what he was facing and asked many difficult questions and when the pain grabbed hold of his little body he stopped himself from saying from what he sometimes says, “I just want to die and go to heaven, so I don’t have anymore pain” and he began to say, “I don’t want to die” or “why is all this happening to me”…But he knew he might have to fight and he would also say, “I know we can do this, cause I have you and dad and Logan.”  We were ready to battle and move forward with whatever we were told. And when the oncologist called to say Parker did not have lymphoma, it was as if the doctor gave me back my breath.  I hadn’t even realized how tightly I was holding myself together.  I could breathe again.  And I thought, “Oh thank goodness he only has Juvenile Arthritis”…and then I thought, “Oh my gosh, he still has arthritis… and now our battle resumes”.  Don’t get me wrong, I know they are not the same and having only one chronic illness is so much better than having two; and of course lymphoma is much more serious…but what so many people don’t realize is that JA is an ongoing painful battle that can also be life threatening. 

As parents, we have extremely difficult decisions to make with very little JA research to back our decisions.   We don’t know what long term effects our decisions will have but what we do know is that we have to do something.  See, we had to halt treatment of his JA until we knew he didn’t have lymphoma because the infusion that his pediatric rheumatologist needed to start him on increases chances of lymphoma.  So we make our treatment choices with a huge leap of faith and we tightly embrace our hope that this next round of treatment will slow down Parker’s JA.  Recently, one of his toes has started to turn in and his hands seem to always be inflamed and in pain along with his ankles, knees, neck, ribcage joints (did you know there were joints in the ribs) and several toes.  And the dentist has been keeping an eye on his jaw because he has had swelling and trouble with it too.  Then there is the constant close eye on his eyes…And we think that his intestinal tract is also affected by the JA.  And of course we still treat his allergies and asthma condition, which has been going pretty good. 

So, last Thursday Parker and I spent the day at the hospital for his newest treatment.  We have discontinued his once-a-week enbrel shot and now he gets infusions of remicade.  The nurse had some trouble getting his IV started (evidence of this resulted in a big fat bruise).  They started with “pre-meds”.  He took his special compounded acetaminophen (all over the counter brands contain corn and he is allergic to corn…in fact, 4 of his meds have to be compounded special for him); then he was given solumedrol (steroid) and Benadryl in his IV.  These are preventative in case he reacts to the remicade and then he received the remicade followed by additional pain meds (due to his flare that day) and they included his regular methotrexate (a chemo drug but at a lower dose than for children with cancer).  By giving him his methotrexate in his IV, we were able to have one week without Friday night shots (a very nice break).  So four hours later, we were on our way home.  The treatment left him very nauseous and for about 24 hrs. he had an extreme head ache, but then they subsided and he seems to be doing somewhat better.  We go back in 2 weeks for his second round and then hopefully not back for 4 weeks.  Once he gets to 4 weeks, he will then get the infusion monthly.  Parker was instructed that he could now get sick easier because his immune system is even weaker than it was with the meds that he is on.  So Miss Clean Gene me will probably be even more of a “germ-a-phobe”…

Many families are experiencing a lot of difficulties this year around their children’s JA.  Please keep them all in your thoughts and prayers.  Many of our JA friends have had changes in treatments, financial burdens, and multiple medical tests that are quite traumatic for young children.  So, we continue to be thankful and hopeful that some day there will be a cure.  We choose to live life fully and we love each other and laugh together. 


This week there was a new publication that might shed some light on how JA is triggered.  Read below:


Science Daily (Jan. 17, 2011) — “Scientists have identified a protein that acts as a "master switch" in certain white blood cells, determining whether they promote or inhibit inflammation. The study, published in the journal Nature Immunology, could help researchers look for new treatments for diseases such as rheumatoid arthritis that involve excessive inflammation.”
http://www.sciencedaily.com/releases/2011/01/110116144132.htm

Staying Hopeful!

This week has been a whirl wind.  Sunday, Logan had one of his intense migraines and Parker had incredible stomach pain all day.  Medicine was not working for either of the boys.  Logan went to bed early after taking his migraine meds (he was diagnosed with childhood migraines when he was six years old).  Parker's stomach was not improving and he actually begged me to take him to the ER.  So at 8pm we were hospital bound.  They brought him right back to a room, even with the waiting room full of people waiting.  They took his vitals and meds and allergies...this was quite a moment for me because it was the first time that I realized exactly how much medication Parker takes because the nurse was counting them to make sure they all made it into computer.  Ready for this...12 meds each day!

The doctor examined him and felt like he might have appendicitis, a blockage, or a fiscar.  He even told Parker that he might need surgery that night or next day.  Parker was mentally ready...at least I think he was...  The ER doc ordered a CT scan with and without contrast.  So he had to drink 3 radioactive drinks with 45 minutes in between each. Blood and urine samples were also taken.  At 3 a.m., we were told that the lymphs in his stomach/intestines area were swollen and that it could be a pre-cursor for lymphoma.  We were told to call the rheumatologist for next steps and that we could go home (with 3 new meds by-the-way).  I walked out totally dazed by this information.

 

I really couldn't believe what I had just heard...I thought certainly his pediatric rheumatologist would discount this...yet I had this sinking feeling because we had heard this word "lymphoma" before.  We got Parker into bed and then we talked this through.  We were replaying in our mind the last 2 years and how we had heard this from our primary doctor 2 years ago on Christmas Eve.  In fact, every time the lymphs swell in his neck his primary doc measures his lymphs...

 

So after calling his rhemy, she made an appointment with the chief pediatric hematologist/oncologist...

So we went to our appointment yesterday...quite the day...and we got quite the education, but still no answers yet. We have more blood tests and the doc is getting his CT scans from the ER sent so he can look at them directly (he only had the report). We loved the hematologist/ooncologist! He was so amazing with Parker and Parker was actually amazing with him. The doctor got to see how funny and smart Parker is and we could tell he seemed to genuinely like him.  He explained to Parker that he is a doctor who tries to figure out what is happening in kids by looking at their blood and that he helps children with cancer.  Parker now knows they are looking for cancer. He is handling it very well. And he knows all too well what this means... His grandpa passed away with cancer and then his cousin has just finished beating leukemia.  Parker decided that he wanted to tell Logan himself.  He did very well explaining to him what happened and what will happen.  Unbelievable strength in this kiddo.  In fact, tonight he shared that he felt bad for Logan because he has to watch him go through all this and it must be really hard for Logan to understand...

 

The doc spent an hour and a half with us. It comes down to, next week he might get a spinal tap for a bone marrow test. So we learned that he could have lymphoma (or not). Lymphoma lands first is in the lymphs, then the bone marrow, then the blood and it is a progression...unfortunatelyy the location of his swollen lymphs is in a dangerous place to biopsy (the lymphs near stomach/intestines). So if the blood doesn't show lymphoma that doesn't mean he doesn't have it...it just means it hasn't progressed to the blood yet and even if the bone marrow doesn't show lymphoma, he said that also is no guarantee that it's not in the lymphs. He said that it is important to get Parker's rheumatoid swelling and pain under control...He wanted to give Parker morphine (we didn't want to do that though, especially with the bowel issues)...he could see indications of pain in some of the levels in his blood (never knew "pain" could show up in the blood...)...Plus he saw the swelling and Parker had a major pain attack during the exam...so the doc assured us he would talk through all of this with his rheumy and together we would determine next steps and if to proceed with remicade (a new infusion drug that takes about 3.5-6 hours and he would go every 2 weeks)...The remicade is our "hope" in decreasing Parker's pain...sometime the pain is so intense and makes my heart feel like it's going to burst.  As parents, you want to comfort your children, yet we can only help him breathe through it.

 

Tonight we were able to proceed with his enbrel shot and methotrexate injection.  It went much better tonight with the addition of an anti-nausea med.  We also gave him all his night meds prior to the shots so he would have the pain meds on board.  We actually had one of the best shots nights ever.   Thanks goodness!  We did his blood tests today and hopeful the CT scans are on their way...so, now we wait...Staying hopeful...

Fingers swollen and red at joint...especially distal joints.

Noddle above pinkie toe.

Big toe turning in.

Swollen knees

In ER