The Long Version of the Spleen Saga

For my own remembrance, here's the long version of Graham's spleen story...

Our September did not start out the best. The Sunday before Labor Day, Nate and I came in from a walk in the evening and Graham was crying in pain. He said his stomach/rib area was so painful and he was in tears from the pain. He had been complaining of abdominal pain on and off for a couple of weeks. He even woke up in the night a couple of times in agony. We would usually give him Ibprofen and his pain seemed to go away so he could function okay. But that Sunday night, it was worse than ever before. He's so active, we were thinking he must have broken a rib or gotten hurt at football or recess. We were thinking we'd go get an xray.

Since it was pretty late and most Instacare facilities were closed, we drove down to the Provo Instacare. We waited FOREVER to get in and then FOREVER to see a doctor. By the time the doctor finally came in and explained what was going on, Graham was inconsolable. The doctor said he had a low grade fever so he felt it was best for us to go to the ER at Utah Valley. Luckily the ER was more on top of it and got him right in. Graham didn't want to be held or touched anywhere near his stomach or else he would cry more. He's usually a tough kid so we knew something was off. 

At the ER, he still had a fever and after talking with the doctor, we felt we needed to do a CT scan to see what was going on. We were there for a few hours in the night, exhausted and tired, while we waited for answers. Finally, when we got the results from the CT scan, it showed lesions all over his spleen and one lesion on his lung. And his spleen was enlarged, which was what was probably causing the pain. The doctor said it could be a lot of different things and we needed to go up to Primary Children's to figure it out. 

As soon as the doctor showed us the lesions on the scan and told us we needed to go up to Primary's, it felt pretty serious and scary. He explained that the lesions looked like a fungal infection, a bacterial infection, or possibly lymphoma. But we needed more tests to figure it out. I started shaking uncontrollably at this point (I guess this was my first panic attack) and we were trying to remain hopeful but the uncertainty felt pretty scary. We were certain it was just rib pain, so having unknown lesions on his spleen surprised us. And we instantly had so many questions and uncertainties. Graham was exhausted and had fallen asleep at this point. But we filled out the discharge paperwork and headed up to Primary Children's about 3am.

Our other kids were home so had just left Aiden in charge. Aiden has a big heart and he kept texting us to check on Graham. He was very worried about him and never went to sleep while we were away. So he was awake when we called to let him know we had to go up to Primarys and we didn't know what was wrong. We told him to be in charge of the other kids until we knew more. 

We stopped at home real quick to grab some essentials (food, toothbrushes, a change of clothes) and headed up to Salt Lake.  We had to wheel Graham into the hospital and they got us into a room pretty quick. They told us we could sleep for a couple of hours and in the morning we'd do more tests. Definitely no sleep happened on my end while my mind was racing, but luckily Nate and Graham got a little sleep.

The next morning we met with the Infectious Disease team. Since Primary's is next to the U of U hospital, we had a whole team of doctors working on his case. Some doctors, some in residency. Since they didn't know what the infection was, Graham began lots of tests and bloodwork. He did another CT scan, a echocardiogram, multiple ultrasounds, physical examinations, etc. Because none of the Infectious Disease team had seen anything like it, they covered all of the bases to see what was causing these lesions. The CT scan looked like a fungal infection so they did lots of blood cultures to see what would grow on them. Oncology looked at his bloodwork too. No stone was left unturned.

The first few days in the hospital were a lot of tests and no answers. And a lot of waiting around while we were waiting for results. Those were some of the longest days of my life! We didn't know if it would get worse, if these lesions would spread to other organs, if something seriously wrong was going on. Luckily Graham started to feel better and wasn't in too much pain. He spent time playing video games and relaxing. I was a complete mess on the other hand. We had called Becca and my parents to ask them to help with the kids while we were away and then word got out that Graham was a patient at Primary Children's. I spent a lot of time in the hospital answering texts and trying to explain what was going on (even though we had no idea). It was emotionally draining. The unknown was utterly exhausting. My worst case scenario mind got the better of me and I was a wreck. I clearly remember Graham telling me to stop crying. How ironic that the sick kid was tougher than me! It's funny to look back on now. Nate was pretty steady and hopeful, but he was also exhausted and worried for Graham. The unknown was so hard.

The results slowly started to trickle in from some of his tests. Negative on everything. Some of the big contenders all came back negative so the doctors were stumped. They added some autoimmunity tests too. There were a few elevated markers in his blood for infection. Everything else looked ok. They had talked from the beginning about doing a biopsy of Graham's spleen. The doctors seemed a little uncertain if that was safe to do because basically the spleen is a ball of blood and biopsies aren't typically done on them. But on Day 3, Graham had a biospy done of his spleen. (Side note - the doctor we're working with now is completely shocked they allowed a spleen biopsy!) When we went to meet with the surgeon, he was upfront and told us he's never done a spleen biopsy. Nate and I were pretty nervous about it because of the risk of internal bleeding. Lots of prayers were said that day! 

Luckily it went off without a hitch and Graham was a champ. He was nervous about all of the testing but he had a great attitude. We got the results from that and saw that parts of his spleen had necrosis from granulomas. That was sent to the University of Washington to do the most thorough test of infections possible. It would take a few weeks to hear back. We were hoping in the meantime, the blood cultures would show what fungal infection or bacterial infection was going on so he could start treatment. But everything kept coming back clear.

The night before Graham's biospy, he got emotional during our nighttime prayer. He had been holding it together but the unknown medical discussions and having to stay in the hospital for days hit him. And he was scared about what this biopsy meant. But honestly, the rest of the time he felt great in the hospital. It was more nerve wracking for me and Nate as we waiting for answers and just kept hearing negative results and having no answers. Primary Children's has it figured out to make kids feel as comfortable as possible. They have a play area where Graham loved playing air hockey. There was an XBOX in our room that he LOVED! The hospital food allowed him to eat ice cream at every meal and soda and all sorts of good kid food. There was a Family Life Specialist that came around and brought Legos and toys and sticker books. She even brought a dog one time to distract Graham from more bloodwork. We spent time at in the Ronald McDonald room room playing card games and eating cereal. The nurses and doctors seemed to truly care. We felt well taken care of. Back at home, we had people show up and serve and love our family. Dinners and food were brought in, gifts were dropped off, our other kids were taken care of, we had lots of sweet messages and care sent to us. It was very humbling and something I'll never forget. We felt very loved. It helped bring comfort that no matter what Graham's diagnosis would be, we had support.

We ended up staying in the hospital for 4 days total. Because no definitive explanations and answers were found, they were hesitant to let us go home. Oncology cleared us (thankfully), many of the suspicious fungal and bacteral infections were negative, and autoimmune tests were clear so far. At this point, Graham's fever was gone and all we were doing was hanging around waiting for answers. So Nate talked the doctors into letting us just go home and wait for answers there. It felt SO good to finally get to go home!! Those four days were HARD! Being home felt familiar and we were so happy to be back with our other kids.

We continued to receive results at home. All still negative. We would talk to our main Infectious Disease doctor on the phone and had follow up appointments and scans. The scan two weeks after the hospital stay showed that the lesions had grown in number and size. That was discouraging. The University of Washington test came back and all infections were negative. So Dr. Jones had us start meeting with Dr Sara Stern to see if this was some rare autoimmune disease. So that's who we've been working with ever since. Because of the enlarged spleen, Graham had to spend his next couple of months staying away from physical contact. He had to sit out at recess. He couldn't play football (which was SO hard for him!) Any time he complained of "rib" pain, my heart would drop and I'd worry we have no idea what's going on in his little body. Lots of prayers were said for Graham by us and many others that love him.

About a month after our hospital stay, Graham's ultrasound showed that the lesions hadn't changed and it seemed things were in status quo. The inflammation markers in his blood had also gone down. Graham had stopped complaining of pain and it seemed like it was a turning point. Meeting with Dr Stern was great! She's an incredible pediatric rheumatologist. She checked everything on Graham and did another full work up.

So that leads us to now (4 months later). Graham's most recent scan showed that the lesions are fading and his spleen is within normal limits for size. Such happy news!! His bloodwork also looks good. And Graham feels good! Because his spleen is a normal size, we've let him be active again and play with friends and play at recess and be a KID! We never found an official diagnosis but it seems most likely that Graham had some sort of infection and he had a weird, rare post-infectious process. Somehow as his spleen was filtering out an infection, it attacked part of it. But it seems like his little body knew how to fight it and repair itself. We're hopeful that the next scan will again show that things are turning around.

It's interesting that we prayed at the beginning of this to find answers and figure out how to help Graham. It was frustrating when our prayers weren't answered. But now, looking back, it was a blessing that we weren't getting answers! It meant that Graham didn't have a horrible disease. Graham didn't have a bad infection. We feel so grateful for all of the negatives and that Graham is back to feeling his best!

Here are some pictures from those long few days:

Graham at the ER. Not feeling good and SO tired because it was the middle of the night.

He had no energy and he was in pain if we carried him so he got to ride around in this once we were headed from the ER to Primary's. 

Once we settled into Primary's, Graham was happy to play video games as much as we'd allow.

Hospital food was not our favorite....

Living his best life:

He loved getting gifts too.

When we got home, Graham loved getting to eat these. (Thanks to Bishop Peterson)

Graham had to take it easy, so the video games were a common occurrence.

We went to a ward party and went on walks and played toys and tried to live a normal life while we continued to wait of answers. I loved having extra time home with Graham, relaxing and hanging out.