A few Words

Today was a long rough day.  We first woke at 5AM to Ryan screaming from pain while urinating. Then we headed to my mom’s to drop off Rowan and then off to the hospital. The clinic wanted a urine sample to test for UTI and to see if there was any blood to indicate a kidney stone. He had no problem peeing in the cup – pain free, it figures. Then we headed to radiology where after 2hrs of waiting he was sedated then scanned – all that for 15 minutes. He took his time waking up too but by noon we were headed to see the sites in the hospital and begin our 3hr wait until his next appt.

Ryan went into melt down mode after about a half hour and I was dehydrated, starving, and so ready to go. We attempted to leave, actually making it to the car, seat belts on. But we were both super grumpy and just needed to stop for a moment. I figured we should just stay, eat, and wait it out instead of going to mom’s, risking him falling asleep in the car, possibly eating, possibly napping, then heading back to do all over again in a few hours when we were both so cranky. I stepped out of the car to breathe as Ryan flailed inside. Tantrum done, then we hugged and made-up and headed back inside to eat.

Lunch was quite pleasant. Ryan had pepperoni pizza and I bought a pineapple fruit cup to add his favorite topping to the slice. He also devoured a mandarin orange jello cup and a grape slushie. After refueling our bodies, we decided to go for a ride to the stars and bottom of the sea courtesy of the glass elevators in the lobby. It was almost exactly a year ago that he did this for the first time. One of his favorite nurses, Ryan, showed him this for the first time. He took him for a wheel chair ride out of his room and into the hospital. He had a trach then and was so very ill. If you look back through pictures you can see for yourself. He has come so far.

After zooming to the sea one last time, we rode the escalator and then stopped to watch the ever-fascinating ball machine. He dragged me into the gift shop where we spent plenty of time playing with every toy. I was coerced into buying him a fire truck which he is currently sleeping with.  We then went upstairs to the clinic to wait some more until our appt, only 40 minutes too soon. And it figures she would be running behind too. Wait some more. Finally the doc came in and gave us a word.

“Stable”, she said. “The scans this morning were stable.” I heard her but I also saw her. Her body language expressed something more. She seemed uncomfortable, not as enthusiastic as her words begged to be. She then said she was “uncomfortable with the terminology the radiologist used” in the report. She lost me there. What does THAT mean? She explained that there are two small areas on his lung that in past scans were referred to and considered to be post-operative changes. But on this latest report the radiologist - who she gushed is very good and very trustworthy - called these two tiny air filled pockets something else. Another word: “cysts”.

It’s just a word. Just one tiny word. Could mean nothing. Could mean… something. To a parent of a kid with PPB, and to a PPB doctor, that word has a lot of weight. PPB starts out as a tiny, seemingly harmless, cyst on a child’s lung. The cyst then grows and becomes filled with liquid and then advances to become a solid tumor. I could now understand why she looked so concerned.

She tried to reassure me that there have been “no changes” in these, suggesting post-operative sites, and that the scans have remained stable and the overall verdict is that he is disease-free. But she said she is going to confer with the radiologist and his surgeon to make sure and to better understand why this term was now used. What does it mean?

Cyst or not, they are going to keep an eye on it to determine if there is any growth or change, which may indicate return of the cancer. When and if that happens, they will decide how to proceed at that time. But as it is right now, there is no change. He is stable. His next set of scans is in three months putting us at the end of February, right around Rowan’s second birthday. So we will just have to wait, and pray, and see.

As far as the pee-pain… his test came back fine, no blood and no infection. So they have no idea what was causing that. If it happens again, I am to call the doc right away so we can look further into it. However, the radiologist said his testicles are always bouncing around up inside of him. I guess on several scans they can be seen. This is not unusual but they should be able to drop back down. She described them as yo-yos that can bounce up and down inside and then drop into position outside of the body. They are concerned because they should’ve dropped by his age and there is an increased risk for testicular cancer if they can’t drop. After a thorough exam, the doc said she could not find his left one to pull it down into place. He will need to see a pediatric urologist who can “tack it down” as she put it. I’m obviously not a guy, but it makes me feel squeamish as my imagination stumbles over just how they may accomplish this.

I am hanging onto hope, as always. There are a few words and what they all mean that will be running through my mind over the next 3 months. “Stable” is good. “Cysts” is undecided and panic inducing. And “tacking down a yo-yo” while seemingly comical is the next medical hurdle. Right now I just want to enjoy the holidays with my family. And stand in awe and thankfulness of the abundance we DO HAVE in our lives.  

Finally by 5, I got to mom’s to pick up Ro and a lovely pork pot-roast she had cooked for us. This exhausted mommy and the sleepy kids headed home arriving just minutes before Daddy who was coming home from work. And after quickly eating, I went straight to bed. I awoke to help put the kids to bed then decided to stay up a bit and write this update to all of you who’ve been so patiently awaiting a few words.

Thank you for sticking with us this past year. My heart and my gratitude are continually overshadowed and overwhelmed by friends’, family’s, and even strangers’ warm hugs of support and generosity. My sincerest THANKS! Happy Holidays to you and your family!

Grains of Sand

I live in a small quiet neighborhood, where everyone knows each other, people are friendly, helping with yard work, sharing their garden's harvest, lending tools, and always ready to share a drink and some gossip. The appearance of emergency vehicles on our street gets everyone's attention, even when they just cut through to another street. And the time a tree fell on someone's car one street over and the power was out for a few hours, everyone came out of their houses to nose around, see what was happening, and chat with each other. So having an ambulance and police car stop at our house, the house where the kid with cancer lives, I am sure that caused quite a stir in the neighborhood and many to worry.
But it was not Ryan who was rushed away. It was me.
I had a rough day on Tuesday.
I woke up with a massive headache that just got worse as the day went on.
I decided to not take any of my pain pills or muscle relaxers since I had a Dr appointment with the nurse practitioner to follow up on my back issue.
For those that don't know, I went to the ER at 4AM Friday morning because I woke up with an awful pain in my lower back. I felt like I couldn't move. It took awhile to get out of bed and when I did I felt the pain shoot into my hip joints and down my legs. I have never had pain like that and certainly never had back pain that woke me up before. I decided to go to the ER. I drove myself. And in less than an hour I was out of the ER with prescriptions of pain meds, muscle relaxers and anti-nausea pills. They did no tests other than a urine test. I told them of my history of kidney stones and they ruled that out because of the location of the pain. I too, was convinced this was not kidney related because of how the pain shot down my legs.
So after a weekend of being a drugged up zombie, I decided to back off the pain pills on Monday so that I was halfway human to care for the kids. I was still really sleepy but managed to keep the kids alive until Robert got home from work and could take over for me. That day I noticed a dull ache in my back. The kind of ache that in the past typically precludes a kidney stone.
Back to Tuesday... at the doctor's office I told the nurse my story and she was appalled that the ER did not do any tests on me knowing that I had a history of kidney stones. So she wanted me to get a CT scan of my pelvis and abdomen to check for kidney stones. She also heard some rattling in my lungs and wanted me to get a chest xray as well since I was sick with strep two weeks ago. And she wanted to get a blood workup as well.
While discussing these things I mentioned about how I had experienced some chest pains about a week and a half ago. It was a Sunday evening, the kids were in bed, and I was sorting coupons on the floor. I felt a tightness and squeezing in the middle of my chest and a tingling numbness that radiated down my left arm. I was surprised and a little afraid. It came and went in waves and lasted about a half hour. I was fine afterwards so I figured it was nothing. She was concerned and did an EKG in the office which turned out fine. Maybe it was just a fluke, maybe heartburn, maybe a panic attack. But I wasn't panicked about anything. I didn't feel particularly stressed or anxious. She said the next time that happens to call her right away.
So I left the office after getting my blood drawn, with an ever increasing headache. I figured if I could just get home, I can take my pain pills and I'll be alright. I picked up the kids from a friend's house and headed home. I fed them lunch and put Ro down for a nap. Ry watched a video and played quietly. By this time the headache had gotten even worse and I felt very nauseous. I thought I should eat something because maybe that's the reason why my head hurts so bad. I ate a banana and some tortilla chips but the nausea stopped me from eating anything more. The pain was so bad and I was feeling extremely exhausted, like I could go to sleep at any second. I didn't take my pain pills because I was afraid of of them knocking me out when I had the kids to take care of and I was already so tired. I sat down and tried to close my eyes for just a moment and meditate away the pain. I called several people trying to find someone to come and sit with the kids while I just take a pain pill and nap for a bit.  But no one was home or available. Then I started to feel very strange. The pain had increased along with some new symptoms.
Difficulty breathing, dizziness, nauseous, tightness in chest, and tingling and numbness in both my arms and hands... it freaked me out. I thought I was having a heart attack.
I called Robert and told him that I wasn't feeling well and that I think I'd better go to the ER and can he please come home. He said he was on his way.
Then my phone rang and it was the scheduling department at the hospital wanting to schedule my CT scan and xray. I told the lady I wasn't feeling well. I told her I may be coming to the ER. I told her I didn't well at all and that I was having a hard time breathing and felt like I was about to go to sleep. She replied, "So you don't want to schedule this right now?" I told her again I didn't feel well at all and she said, "OK, then I'll let you go." It didn't occur to me until much later how absurd that conversation was.
I crumpled to the floor and tried to stay awake and stay calm. I then called my dad to ask if he could come be with the kids. He said I had better call the paramedics right away if I was experiencing numbness in my hands and chest pain and difficulty breathing. He demanded, "Get off the phone with me and call 911."
So I did.
The operator said she'd send someone right away. I then asked Ryan to run next door and tell them Mommy needs help. He said, "But Mom, I don't have any shoes on." I told him that it was ok just this once and to hurry next door and knock on the door really loud. He gleefully ran outside and returned moments later. I asked if he did as I asked and he replied, "But Mom, there were spider webs on their door." Turns out it didn't matter anyway because they were not home and the paramedics arrived shortly after. I explained to Ryan that some doctors were coming to look at mommy and make her feel better and to not be afraid. I told him they would probably take mommy to the hospital. He loves the hospital so this did not sound bad to him at all. In fact, he was so excited to see the ambulance he was practically jumping up and down.
My eyes were closed most of the time because I was just so tired, I was fighting sleep and pain and fear. I could hear many voices asking me questions and taking my blood pressure and checking my oxygen levels. Someone went upstairs and got Rowan out of bed. Someone else entertained Ryan.
Others helped me to my feet and helped me walk (more or less carried me) outside to the bed and then wheeled me into the back of the ambulance. Robert arrived and took care of getting someone to watch the kids and headed to the hospital right after I left in the ambulance. They checked my blood sugar and it was at 80. They said they only treat if it is below 80. They then tried, and failed, to put an IV in my hand while en route to the hospital. It felt more like they were digging around in my hand with a wire. Too dehydrated I guess. But they got one in at the hospital without any problems.
At the hospital they gave me something for the nausea and morphine for the pain. Morphine does not knock me out. This is something Ryan and I have in common. If anything it seems to perk us up. They did a chest xray and ct scan of my abdomen. The doc came back with good news. He said that my vitals and lab work and xray all looked great, like a young healthy woman. And on the CT scan they found nothing but two very tiny, almost microscopic, stones in my left kidney. These two little stones, like grains of sand, were wreaking havoc on my body. The doc explained that the increasing pain caused me to have a panic attack which explains the chest pains and dizziness and such. The numbness in my extremities was caused from my hyperventilation and blowing off too much carbon dioxide. He had a fancy word for it but I can't remember what it was now.
They sent me home with another prescription for pain medicine. And I didn't even get to vote.
And now it is a waiting game. I am drinking plenty of water and taking my pain pills and I'm just waiting for them to pass. There is nothing they can do for me. There's nothing anyone can do. I just have to keep taking the pain pills to be able to somewhat function and not scream.
So Wednesday I decided to go to my mom's house in order to have some help with the kids while I am drugged up. I experienced the chest pains once more. I was not stressed or panicked, just sitting still and talking to my mom at the time.
So I called the doctor's office right away. The receptionist asked to take a message because the nurse practitioner was seeing patients at the moment. I told her, "I saw the nurse yesterday and I was taken to the ER later the same day by paramedics because of chest pain. The nurse had told me if it happens again to call her. So that is why I am calling right now. I am having the chest pains... right now." The receptionist replied, "Ok. I'll give her the message."  Click.
The pains came and went once again. No big deal. I took another pain pill and decided to take a nap. When I awoke, I had a message and three missed calls from the doctor's office. The voicemail had a panicked sounding receptionist who said "I gave her the message and she wants you to go to the ER right away. Please call me and tell me you got this message."
She obviously got chewed out for not instructing someone to go to the ER when they call saying they have chest pain. I called back and told the receptionist that while I got her message I did not go to the ER, and was not planning to go as the pains have come and gone. And besides yesterday the doc told me it was just a panic attack, nothing more. She implored me to please go to the ER if they happen again as it is better safe than sorry.
So now as I wait for those grains of sand to pass as painlessly as possible (yeah right) and try and figure out what I am so stressed and anxious about.
I have no reason to be stressed and anxious now, right? Now that everything is ok. Now that the worst is over. Now that we can all sit back and relax and breathe. If anything, you would've expected me to be breaking down and having panic attacks a year ago. Maybe the past year has finally caught up with me. Maybe I can no longer be strong. Maybe I am tired of being brave. Maybe I just want to break down and cry and scream and shout out at how unfair all of this has been for us. Maybe all of my strength and courage has finally been spent. And now all that's left of me is being washed away like grains of sand upon a shore.