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