Wes and I are currently in Salt Lake City, trying our darndest to do his next chemo round. So far, we’ve failed for two days. We’re crossing our fingers that today will be successful. Because of Wes’ Diabetes Insipidus (hereafter called DI because I’m sick of typing the whole blasted thing!), when he takes his medication that treats it, he holds fluids longer than normal. This is a problem when they’re infusing chemo, as holding on to it will do more damage to his kidneys and bladder than is already occurring. So, before they start his infusions, he has to reach a specific threshold in the amount he has peed. Since we’re doing this on an outpatient basis, if we don’t meet that threshold by 4:00, we have to leave and try again the next day. We were supposed to finish up his last infusion for this round today. However, it’s 3:13 pm, and we’re still sitting here, waiting for him to go enough. They just started an IV to give him additional fluids, so we’re hoping that helps. If they aren’t able to start the chemo soon, I’m not sure whether we’ll have to try again tomorrow, or if they’re going to admit him and just start it tonight. We’ll see.

We started off this round on a particular low note. We had to come down on Monday for an MRI. We had to go to Primary Children’s Riverton clinic because the main campus didn’t have any slots open for him. So, we headed straight there when we reached Utah. When we got there, we were told that there was nobody there who could access his port, so they would have to start an IV. For some reason, none of the techs could get an IV on Wes. They tried 4 times, and it seems like each successive attempt was more painful than the last. I’m positive they hit a tendon on at least one of the tries, which as a Mama Bear, did NOT thrill me, to say the least. Eventually, Wes and I said no more, and they sent us to the Oncology Clinic back at Primary’s main campus, to have them access his port, and get him in for an emergent MRI. The nurse at the clinic, Cami, is Wes’ hero. She has been able to access him when nobody else could, and it just so happened that she was there that day, thankfully. She was able to access him on her first try, and after cheering, we went down to get his MRI. At this point, I had been calling the Ronald McDonald House to see if they had a room for us. To explain how the Ronald McDonald House works, you have to call the day before you come and get your name put on their waiting list. Then, you call the day you’re coming to see if there have been enough people checking out to open up a room for you. It’s nerve-wracking, to say the least, to not know if you have a place to stay when your 4 hours away from home with a medically fragile child, and little to no money to pay for a hotel. After Wes’ MRI, I called Ronald McDonald House one more time to see if they had a room for us yet, and was told they didn’t, and probably wouldn’t, as there were three more families ahead of us. I wanted to sit down and just bawl. As a contingency, I had called the University Patient and Family housing earlier in the day, which only charges $50/night, but they were also full, and had to put us on their waiting list. So, I had no choice but to get a hotel room. There is a list of hotels in Salt Lake that offer a hospital discount, but even with that, it’s still around $100/night for a room, plus meals (which you don’t have to pay for when staying at Ronald McDonald House). So, I was deeply frustrated and stressed. The icing on the cake was, about 10-15 minutes after we’d checked in to the hotel, I got a call saying that Ronald McDonald House DID have a room for us. At that point, I couldn’t check out of the hotel and get a refund, so we just stayed there. It has been rough this time.

Wes has been particularly down this round. He’s missing his friends and all of the activities he was able to do last summer. I have tried to cheer him up, but I’m not his friends, and we still can’t do things like swimming in the canal (gross!) or skateboarding that he was able to do last year. I have tried to do some fun things with him when he feels well while we’re here. We went to Hogle Zoo on Tuesday, and had a lot of fun. We were hoping to be able to visit Temple Square again this round (one of our favorite outings!), but after waiting all day for chemo, we’re both just mentally and physically exhausted by the time we’re able to leave, so we haven’t been able to do that. That’s just pushed him further down. Today, though, we got a surprise visit from one of Wes’ friends from Sugar and her family. Wes calls Liz’s family is “second family”. He even calls her mother Mom, which I think is awesome. I haven’t been able to meet these people until today, and it was so nice to be able to thank them for loving my boy. They really cheered him up and made him laugh. It was nice to see Wes’ old, fun-loving personality shine a little bit brighter with them here. Thank you for making the detour, you guys! It was much appreciated!

Our last round of chemo was pretty awful, being in the PICU. The staff is amazing and so helpful, but there’s only so much they can do to help. When we got home, Wes was given a medication he’s never had before, Neulasta. This drug helps white blood cells to develop faster, so his immune system can recovery more quickly. One of the things we didn’t know about Neulasta is that it’s fairly common to have bone and joint pain afterward, due to the marrow being forced to increase production of white blood cells. Wes was in A LOT of pain. At one point, he rated it at an 8 out of 10, which is really high for him-he hasn’t rated any pain that high ever. He was crying and as his mother, it was torturous to have to watch that without any significant recourse to help. I tried heating pads, massaging his legs, warm baths, lotions, etc., and while these things helped, nothing took the pain to a tolerable level for him. In the meantime, I was missing work, which meant I wasn’t making money or doing my job, which was adding to the stress for me. Wes’ oncologist in Utah couldn’t write a prescription because all controlled substances, which Rx pain meds are, have to be hand-written, and it wouldn’t have made sense to drive clear down to Utah just for that. She called an oncologist in Idaho Falls to see if he would be willing to see him and write him an Rx, but he was the only doctor in his clinic, and didn’t have time to see him. He also said that controlled pain meds don’t help with this kind of pain, so it would be pointless to prescribe him any. He recommended that Wes take Naproxen (generic Aleve) and see if that helped. Well, Wes’ primary oncologist doesn’t want him to have any NSAIDs because his platelets are low, which means he is at a higher risk for bleeding, and since Naproxen is a type of NSAID, it belongs to a group of drugs that is notorious for making bleeding problems worse. So, she called his family doctor, but nobody got back to us, and in the meantime, we were going on three days of this pain for Wes. So, I did a big, fat, no-no and called a friend of mine who is a doctor and begged him to help us out just until we could get in to see one of Wes’ doctors. Thankfully, he was willing to write a prescription for Wes for a few pills, which is all we needed. They worked like a charm, and Wes felt like he could go on living again. Thank heavens!

So, we’re kind of in the thick of the tough stuff. Wes’ next round will be in the PICU, and neither one of us are looking forward to that. However, this is what fighting cancer looks like. We look for the bright spots among the darkness. I have discovered a love of car washes; don’t ask me why, I have no idea. I just think they’re really fun, and they make me smile, especially when they have lights that change color and the soap is colored, too! So, we went through a car wash yesterday, and that was fun. Last night, a music therapist came to Ronald McDonald House (where we have now been able to get a room. Yea!). We had a lot of fun playing her instruments and games and getting to know other kids and parents at the house. Then, we went to a grocery store at 10:45 last night to get the supplies for a taco salad that Wes was craving. He LOVED the scooter-type carts they had there, and we both laughed and joked our way through the store. So, there are definitely good things happening. We’ll try to stay focused on those, and keep working to get through the not so awesome stuff that happens in treating cancer. And, all in all, we can be grateful that there actually IS a treatment that can be given at this point, because there are many patients and families facing the stark reality of not being able to treat their conditions. I’m grateful for that continually.