Wes and I are sitting in the PICU, in his second room of this round. For some reason, every time we are here, we get to move rooms at least once. This time, we moved at 3:45 am, because we happened to be awake then for a blood draw, and it was either move then, or wait until 5 or 6 am, when we would have just fallen back to sleep. So, we moved.

Things have been okay thus far. Wes is feeling well, other than recovering from the pretty good sunburn he got while he was at his Dad’s last week. 🙂 The nausea has been kept under control, and he isn’t in any pain.

One of the things that makes PICU stays so difficult is there is at least once code blue per day that we’re here. The day we checked in this week, there were actually three going on as we were being checked into our room. Wes understands what’s happening, and it scares him and concerns him for the patient and for their family. Personally, I have seen enough chest compressions on little ones to last a lifetime. Codes are called over the intercom, so we always know when one is going on, but for some reason, it seems there are a lot of codes in rooms close to us; either across the hallway or next door. The staff here is, of course, just perfectly amazing in how they handle the codes. There is no yelling (generally), and they remain calm and composed throughout the entire process. If you didn’t know what was going on, you would think the patient just had a lot of providers around them, maybe doing rounds or something.

This time, we’ve seen more codes than we ever have before, and there was actually a death this time as well. It was excruciating to be in our room, hearing the providers talk with the parents, and then the rest of the extended family. I wanted to badly to go hug each of them. Unfortunately, after the patient died, Wes had to go use the bathroom, which is across the unit from his room, and when we came out of his room, I saw the body of this sweet child lying on a mortician’s gurney, covered in a sheet. For some reason, nobody had thought to shut the curtain or the door to the room, and I was really worried Wes would look over and see the body and get upset, so I just kept him distracted, and he never saw anything.

There was another code out in the hallway outside our room last night, and Wes saw the staff rush to care for this patient, and it really scared him. Wes, being Wes, immediately bowed his head and said a prayer for the patient, their family and the staff. He and I have had a lot of talks about what it means when Code Blue is called, and what happens from a staff standpoint. He understands that the staff in the PICU, in particular, have had extensive training and practice in caring for these acute situations. I believe in being honest with my kids, so I’ve answered all of his questions as openly as I could. When he asks whether the patients are going to die, I’ve told him nobody knows that when a Code begins, but that the staff does everything they can to avoid that outcome. We’ve discussed the myriad of resources they have to save a patient’s life. And we’ve discussed what happens physically, emotionally and spiritually when someone dies. Of course, we don’t know everything, but I’ve told him what I know, and we’ve discussed what the remaining possibilities could be. I think it’s made Wes more aware of his own mortality, unfortunately. I would never want any child to wonder about the end of their life, but given our current circumstances, I think it’s natural that the topic has come up. It’s unfortunate, but it’s part of childhood cancer.

Another thing that’s difficult is the “sleeping” that happens (or doesn’t happen) in the hospital generally, but in the PICU in particular. Nurses here have to do a complete head to toe assessment every two hours around the clock, and he needs his blood drawn every 4 hours, and oral meds every 4 hours, so we get a LOT of company. My “bed” is actually a chair that reclines and is less than comfortable. Wes does fairly well, all things considered, but it definitely wears on us both, and we get all kinds of excited to get home.

One of the things I love about Primary’s is that they take into consideration all aspects of what a hospital stay means for all kids and their families. There are fully-stocked, free laundry facilities here, as well as two Ronald McDonald rooms, with showers for patient families to use, computers, books, games, crafts, and a fully-stocked kitchen, all free to patients and their families. They’re building a third room on the fourth floor because there’s such a need for these services.

Once again, I’m grateful for all of the blessings we experience on a daily, and sometimes hourly, basis. I’m grateful that when they happen, I can recognize them. Mostly, I’m grateful that we have access to the treatments that are going to save my son’s life. I don’t take that for granted at any moment.

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.

Wes and I returned from Salt Lake on Tuesday evening. To say we were both exhausted is an understatement. I knew this round was going to be rough, and it lived up to my expectations, although there were definitely good times as well.

I received a phone call Tuesday evening, asking if I could bring Wes down that evening to begin his next round the following day. With such short notice, I wasn’t sure I could make it work, but I was able to switch some things around, and with some help, we were able to head out. We reached Salt Lake at 10:00, and checked in to University Patient and Family Housing, since the Ronald McDonald house was full. The next morning, we headed up to Primary’s to be checked in and begin chemo. For this round, Wes has to be put on an IV version of the medication he takes for his Diabetes Insipidus. The nurses have to titrate it to his sodium levels and his hydration levels, to create a balance between getting the chemo out of his system quickly enough to mitigate the damage it’s doing, but not have him so dehydrated that his sodium gets out of wack. It’s a delicate process, and, it turns out, quite tricky. To do this, Wes needed to stop his normal oral medication that morning. Well, when Wes took his meds, he just took them all (because he’s responsible), and when they asked at the hospital whether he’d taken his Desmopressin (his DI med), he had to tell them he had. He was really nervous to tell them, because he was afraid everyone was going to get mad at him. However, all of the nurses and doctors that talked with him and told him how proud of him they were because he actually took his medication and was responsible. 🙂

So, we got to spend the first day just hanging out in the room, waiting for the desmopressin to wear off. It didn’t, so we didn’t start chemo until the next morning. This round was 1 new drug, as well as a drug that he will have with every round, as well as an additional medication called Mensa, that helps to mitigate bleeding in the bladder, a side effect of one of the chemo drugs. Additionally, Wes had to have blood drawn every 2 hours around the clock so the staff could stay on top of his sodium levels. They could have drawn these from his port, but since there was so much medication as well as fluids being infused through that site, it was decided to give him an IV that could be used just for the blood draws. Primary’s has IV teams, which are comprised of two RNs who just go around the hospital and start IVs all day; they know what they’re doing. However, for some reason, after they’d place an IV that was patent and looked functional, a few hours later, the site would be painful and would quit drawing. We went through three IVs, and about 15 finger pokes to get his sodium level before someone suggested doing a different type of IV that is placed with an ultrasound and has a much longer catheter. This IV is used for long-term use, and worked much better than anything else they had tried. He was able to keep it in clear until discharge. We were all grateful for that.

So, we did five days of chemotherapy, and on day four (Sunday) evening, for some reason, Wes started throwing up, peeing excessively and being really thirsty. At one point, he was peeing more than 2 liters per hour. His sodium levels went wacky, and we all got a little nervous. He was able to sleep for a few hours later that night (or really early that morning) and then woke up and started doing the same thing. Eventually, they were able to get on top of it, and he felt a lot better. He slept through the rest of the day, and we were discharged the following day.

At this point, Wes is feeling pretty good. He has only thrown up a couple of times, and he’s started eating again. All in all, I would say that he’s doing okay. We’ll expect his counts to go down in 7-10 days, and I’m hoping he will keep feeling okay through all of that, but we’ll see, and we’ll just take it one day at a time.

I am struggling with how much to share here about everything that’s going on. I’m not sure what would be appropriate and what I should keep to myself. So, I’m going to just start writing, and whatever comes out, comes out, and I hope that everyone who is reading this can try to understand and view it with compassion.

As most of you know, Wes’ father and I are recently divorced. I’m not going to get into the particulars of that situation, but I want to explain that we are doing our very best to remain friendly and to keep our kids out of the middle of our issues. All of the kids were given the choice to live wherever they want to be. Wes chose to live with Cody (his father)-the idea of changing schools (to a much larger school district) and having to make new friends really scared him, so it’s completely understandable that he wanted to stay with what is familiar. He has good friends and I love the people of Sugar City, so I’m grateful he has this place to keep stability in his life. The other three kids live primarily with me. All of the kids are free to visit Cody or myself whenever they want, barring issues with school, etc. Since we only have two children who are legally minors, they are the only ones we’ve legally addressed visitation and such with.

Recently, Wes asked to stay with me while he undergoes treatment right now, which made me so happy. As his mother, it’s really difficult for me to not be able to see him daily and help him through this process. He may want to go back with Cody at some point, and that will be totally fine; we’ll make that happen. For now, though, I am enjoying having my boy with me and being able to care for him as best I can.

All of that being said, I am now a single mother of four children. I currently work at three jobs, not because I love working, but because it’s my job as a mother to care for my children to the best of my ability, and this is what I need to do to do that. I work full-time for Mountain View Hospital as an Informatics Specialist, I teach part-time at BYU-Idaho, and I’m a Service Coordinator for adults with disabilities. Additionally, I’m one year into a doctorate program in Education. As you can imagine, I have a lot going on basically all the time. If I had my dream job, it would be to stay home with my kiddos, but that just isn’t possible, so I can sit around and whine about it, or I can pull up my boot straps and get to work. I’ve chosen the latter (with occasional bouts of the former, if I’m being completely honest). However, even with all of these jobs, it has been difficult to make ends meet when I have had to miss work to go to Salt Lake and pay for the gas and food, etc. that travel involves. And wouldn’t you know, people still expect their bills to be paid i.e. rent, utilities, etc! The NERVE! 😉

I have been struggling financially, and I haven’t known what else I could do to ensure ALL of my kids have their needs met. This week has been a week of miracles. On Monday, I received a phone call from the HR department and Mountain View. To preface this, I have only worked for this organization for a couple of months; not long enough to have accrued enough PTO to be helpful with our current situation. The call from HR was to inform me that one of my co-workers, who wishes to remain anonymous, has donated 100 hours of PTO to me!! WHAT?! I was floored! I can’t believe someone who has known me for a handful of weeks would be so generous! I am so grateful to whomever this person is; the relief of the stress that this gesture has had for me is huge! I didn’t even know I was carrying this worry until it started to dissipate. So, thank you, to whoever you are.

Then yesterday, Wesley’s school secretary called me and said they had held a fundraiser, and she wanted to figure out a way to get that money to me. The resource officer from his school ended up driving all the way down here to bring Wes some gifts as well as to bring us the money from the fundraiser. Again, this was another miracle and a literal answer to prayers! With all of the financial demands that I’ve had, my checking account was significantly overdrawn. The amount of money that was raised not only covered what I was under, but there was a little left over to help with our next trip to Salt Lake for his treatment next week. I am still overwhelmed by people’s generosity. Thank you to everyone who was willing to sacrifice your finances to help with ours. It was another HUGE weight off my shoulders.

Additionally, my bosses at all of my jobs have been more than understanding with what is happening. They have all gone out of their way to make it possible for me to continue working and earning income while I’m not physically in the area. Mountain View has loaned me a laptop that I can use to work remotely while we’re in Salt Lake. BYU-Idaho has allowed my TA to cover for the days I’m not there to teach (thankfully, with Wes’ current treatment schedule, that will only be a few days the entire semester). Van Wagoner Consulting, for whom I do service coordination, has helped me to ensure that I’m able to contact my clients over the phone and still help them to obtain the services that they need as well. I am fully aware that none of these organizations are required to work with me, and I have worked for organizations who wouldn’t have been nearly as accommodating. I am so grateful that this will allow me to continue to care for my family to the best of my ability (which is far from perfection) while also being able to care for Wes and just be his Mom.

The final miracle that has occurred is that I have seen Wes turn a corner and finally start to be my old Wes again. Yesterday afternoon (after he received the visit from his school resource officer-I believe that isn’t a coincidence), Wes ate an entire Big Mac meal, and kept it all down! He’s starting to become more active and animated, and sleep less. It’s wonderful to see. I am so grateful for this change, and that he can feel relief from the pain he has been in.

In conclusion, one of the effects of working in healthcare is that I have lost whatever filter I ever had; I talk about things that make most people cringe, and I don’t give it another thought. While this has always been a struggle for me, it’s become worse since being in healthcare, where conversations of bowel movements, blood and vomit are everyday and don’t cause me to bat an eye. I hope that sharing all of this is not more than I should have. I want this space to be about Wes and his journey, not about me and mine. I just felt that some of these things needed to be acknowledged and briefly explained, and I wanted to make sure that I document the blessings that have occurred as well, and to express my gratitude for them. I know that there are difficult times ahead, and I want to be able to look back and remember when we felt relieved and grateful, to help Wes and our other kids to remember the good things that have come out of his diagnosis through the difficulties that he and they are going to have in the next few months.

We’re home! We got home yesterday, and Wes has made slow, but steady progress since then. We are getting a better handle on his pain, and I think just being unhooked from all of the machines helps Wes to feel better. I am thrilled to report that he ate three brownies last night, and kept them ALL down!! He also at part of a chicken drumstick, and kept that down as well. He’s starting to act more like the Wes we know and love; he’s annoying his sister and demanding more time on the PS4. It’s wonderful to see.

At this point, we’re scheduled to return to Primary’s for his second chemo round a week from yesterday. I have to be honest and say that I’m quite nervous; if this first round hit him so hard, what do we have to look forward to in round 2? I try not to borrow trouble, but I have to admit that I’m not looking forward to what could possibly be coming in the next few weeks. However, perhaps I’ll be pleasantly surprised, and he’ll just fly through this next round. I really hope so!

I’m writing this from Wes’ hospital room at EIRMC. On Friday, he had to have a transfusion of platelets because his platelet count was down to 3. The infusion was, shall we say, less than ideal. The facility where this was done will be getting a strongly-worded letter from me about all of the mishaps that occurred. Long story short, immediately after the transfusion was done, we headed to EIRMC and the E.R. They drew blood for panels galore, and admitted him for a fever and his extremely low blood counts. His E.R. doc was actually the husband of one of my Cancer Mom friends from Camp Magical Moments, and he was just simply wonderful. He took REALLY good care of Wes, and after the awful afternoon we’d had, it was a very welcome relief to feel that Wes was getting the care that he needed. Additionally, I asked him if someone could shave Wes’ hair-there was hair EVERYWHERE! It was coming out in clumps. The doctor had one of his nurses, Jeremiah, shave Wes, and he was incredibly gentle and kind in doing so. I was so grateful and impressed.

Since then, it has been a cycle of blood work, pain meds, nausea meds, throwing up and antibiotics. Wes has stopped eating, and I am starting to get nervous. His throat is really hurting him, but every test they’ve run on him has come back negative. I personally think he has a sore in his throat, because he has a canker sore on his tongue. I think the chemo is causing it. Today, I finally asked if we could increase what we have been giving him for pain, and that has really helped. He ate some ice cream, which was wonderful to see. The not so awesome news is that about two hours later, he threw it all up. So, here we sit. I’m so worried about my boy. This is one of those times I would give anything to take his place. He’s sick on so many levels, and I just want to make it better, but there’s only so much I can do. He has petechiae all over from his low platelets and the force of his vomiting. His IV (they weren’t able to access his port-part of the mess mentioned above) has been causing problems and alarming throughout the day and night, so we haven’t been sleeping very well.

Needless to say, this has not been the very best past few days. However, when I look at the positives, I am grateful that his asthma hasn’t flared at all, and that we have access to the medications that help him feel better. We also live in a country that has current healthcare available, and I’m beyond grateful for that, even with the mess from the transfusion. And there are kind souls who have done things such as say they’ll bring dinner, and bring enough dinner for several meals, so I don’t have to worry about what my other kids are eating while I’m in here with Wes (thanks, Burgandy!). I’m grateful to my mother, who brought me a salad tonight, and slipped $20 to me to help pay for cafeteria food. My older son has been so helpful, and run some huge errands for me that I haven’t been able to take care of. My professor is willing to postpone a due date for me, and my work is willing work with me and allow me to work remotely from the hospital. And then there are those who have put Wes’ name in the temple and who continue to pray for him and our family. There is definitely sweet with the bitter here.

So, Happy Mother’s Day. Here’s to hoping for better tomorrows, better nausea/vomiting control, and increased blood numbers. Below are some pics from our adventures the past few days. 🙂

Wes gets his blood drawn every Monday and Thursday at 8:00 am. His results from yesterday show that he is now what is called Neutropenic. This is not unexpected; chemotherapy, especially the type that Wes is having, has this effect. This is why chemo patients have to be extremely careful about being around anyone who is sick. Neutropenia is a fancy word for “low on neutrophils”. Neutrophils are a specific type of white blood cell, and part of their job is to fight off infection. A normal Absolute Neutrophil Count (or ANC, as we in the cancer biz call it) is somewhere in the range of 1.8-8.0. Wes’ was 0.13 yesterday.

On the plus side, his Hemoglobin and Hematocrit are amazingly good, which I’m grateful for. This has no bearing on his ability to fight infection, but it shows that his red blood cells are still plentiful and doing their job well. His platelets are falling; again, an expected side effect, specifically for the Etosodmide. If he gets to <30, he will need a transfusion of platelets to help with excessive bleeding. His platelets yesterday were at 57.9. To compare that, last Thursday, his platelets were 142. So, it will be interesting to see where his levels are on Thursday when he is drawn again.

One of the experiences that I am currently dealing with is switching back and forth between my roles as Mother and Healthcare Professional. Clinically, it is fascinating to watch these changes, and the whole process of this battle. As a Mother, it blows. I don’t know that anyone can understand that dichotomy unless you’ve been in both worlds. It’s a strange place to be.

Wes is definitely feeling the effects of chemo now. We have to be on guard for fevers, and if he does get a fever, he has to go to the emergency room for treatment. Getting him to eat is a real challenge now. He just has no appetite, and he’s starting vomiting as well, which just adds to the problem. I know that Primary Children’s is proactive with nutrition as much as possible, so it will be good to get him back down there where he can be more closely monitored at his next chemo infusion appointment.

So far, his hair is still intact. 🙂 When he received chemo with his last cancer, I vividly remember that his hair hadn’t started falling out about 10 days after his first infusion, and we were being interviewed by a local news reporter. She asked about when his hair would fall out. Wes reached up and grabbed a tuft of hair and just pulled it out. It was SO bizarre! I was shocked, and so was he. That night, we had a Happy Bald Day party for him, with balloons, streamers, and a cake. We shaved his head, and Cody shaved his head as well. It was fun. One of my regrets as a mother is that Wes asked if he could draw a blue arrow down his head like The Last Airbender, and I wouldn’t let him. I totally should have. Dang it.

And that’s the latest and greatest. All in all, nothing unexpected, but still no fun. Here’s to hoping for better days ahead!

So, Wes is sick. His CT came back normal, which is wonderful. His doctors were checking for a brain bleed, which didn’t happen, so that’s a relief. However, he continues to have headaches, which his doctors attribute to swelling in his brain caused by the chemo making the tumor “angry”. He’s also starting throwing up and not eating at all. Thus far today, he has eaten half of a yogurt, and thrown that up. How fun. The poor little duffer just has no appetite, and adding nausea to the mix isn’t helping.

I initially began this blog to inform those who care for Wes on what is going on with his treatment. I wasn’t going to get personal, but I’m overwhelmed, and want to get it out, so here goes:

I HATE that my son doesn’t live with me. Especially now. When Cody and I separated, Wes initially came with me, but when he went to Cody’s for Thanksgiving, he decided he wanted to stay there. I have a sneaking suspicion this was because he was afraid to start at a new, bigger school, and have to start over making friends, etc. I can understand that-he’s 14 years old, and social structure is important. Now that we’re dealing with cancer again, it is even more brutal to not have my son with me. I want to be the one drawing him a bath and making sure his meds are given on time and appropriately. I want to be meeting with the home health nurse and making sure he’s eating and resting as he should. It is so painful to not be able to take care of my boy during this time. Perhaps that selfish, but so be it. Since I work and Cody doesn’t, there is that benefit to having a parent home with him, I guess. It doesn’t make it any easier for me, though. Not being able to hold him when he doesn’t feel well and stroke his hair (while he still has it) and comfort him is really, really difficult. I’m grateful I have so many other things in my life to keep me busy, and I also hate that I do as well. It’s such a mixed bag of emotions, and I’m not enjoying any of them, really. I miss my boy. My heart is pulled to him. I need to take care of him. I have to go without fulfilling that need. Not to put too fine a point on it, but it really sucks!

I’m hopeful that Cody will be able to get on top of the nausea and get Wes to eat a little more today. I taught Cody about the BRAT diet, and how that could possibly help Wes to feel better. I hope it does. I’ll check back in with them later today and see how he’s doing. Poor guy. He’s a tough nut, though; when I spoke with him earlier today and asked how he was, his response was, “I’m okay.” That’s my boy. What a stud.

Wes has been feeling okay. He hasn’t complained of nausea. We’ve noticed that he’s more tired and has very noticeably not been eating very well. The past few days, he’s been complaining of headaches. Since he can only have Tylenol, it’s been frustrating to have to know he’s in pain and not have really anything to help. I’ve been speaking with the WONDERFUL nurse coordinators at Dr. Afify’s office, and they think we’re going to have to take Wes in for a CT scan, so now I’m just waiting for that phone call.

So far, his labs look great. That’s to be expected at this point. We will see some drops in his levels as time goes on and he receives more treatments.

So, that’s the update for today. It’s hard to have a child in pain and to feel helpless to do anything. Wes is a tough kid, but he’s still a child. So, this sucks. That is all. 🙂

Wes got the surgery to insert his port this past Wednesday, and it went really well. He was admitted to the hospital immediately afterward so they could start watching his sodium levels due to his Diabetes Insipidus. That all seemed to behave. On Thursday, he received his first dose of carboplatin and etopomide. They also infused a medication to help with nausea, as well as the oral meds he’s on. Carboplatin is known for it’s nauseating effect, so they’ve been fairly aggressive on the medications to counteract that. It seems to be working so far.

So, Wes has now received two of the three total infusions he will get this round. He’s feeling pretty good, so far. He’s week and tired, but the nausea has been kept at bay. His hair will start falling out in a week to ten days. I asked him if he wanted to have another “Happy Bald Day” party, and he said he did. I’m not sure where we’ll have that or when, but I think it will help to lift everyone’s spirits somewhat.

He will have his next round beginning on May 20th. This round will be much different than this one. Wes was actually discharged from the hospital yesterday because his levels were doing so well. We did today’s infusion in the infusion center of the oncology clinic. The one tomorrow will be done in Short Stay in the hospital, but he won’t be admitted. We’ll be there just long enough for him to get his infusion, and then go home. This next round will be much more intense. Wes is going to be admitted into the PICU so they can titrate his desmopressin, which is the medication used to control his DI (diabetes insipidus). He will be receiving this medication through his port, and that is more fussy than the oral medications. In addition, the chemotherapy will be different and more intense. So, it will be 5 days inpatient in the PICU, which means a nurse will be checking on him every 2 hours around the clock. All this equals little to no actual good rest for the duration of this stay, in addition to the effects that this chemo will bring, on top of the effects of this current infusion. So, all of that should make for a very “interesting” stay. I’m trying really hard to not borrow trouble, but it seems this is going to get worse before it gets better. Isn’t that just the way of things, though? I think that holds true for most struggles.

I wanted to say thank you for all of the emails and texts that we’ve received. I’ve had Wes read all the emails, and they made him grin. Thank you for loving our boy! He’s still in good spirits. He was slightly over-dramatic when we left the infusion center today, and was acting slightly intoxicated. 😀

Please keep those prayers and positive vibes coming our way. We have felt the buoy of all of them, and will continue to need them. We still feel so blessed to have access to the medical care that Wes needs, and to have full confidence in the providers that we’re seeing. Unfortunately, that isn’t always true around the world, and I don’t take that for granted. Until next time…