February 22nd was his regular monthly clinic visit. He started phase 4 of Maintenance with a Lumbar Puncture (which he did unsedated again!- he is incredibly brave), the chemo Vincristine, and a treatment of bisphosphonates for the leg pain/ bone inflammation. His CBC (complete blood count) was fairly low. His ANC (absolute Nuetrophil count) was 600, 500 is considered neutropenic ( unable to fight off infection or virus). For Nick this is the lowest his ANC has been since the first 2-3 months of treatment. This had Bryan and I concerned but the doctors attributed it to the Flu Virus he had.
The next 2 weeks were full of worry as Nick didn't seem to be getting better and was struggling with feeling really weak and tired. One day I needed to make a quick trip to Sam's Club for a couple of items for dinner and he wanted to go with me to get out of the house. Once we got there he felt super weak and realized he was not able to walk around and get the few items we needed. We ended with me helping him walk right back out to the car to drive home. He was napping twice a day and he definitely wasn't feeling so hot. By Thursday March 8th both Nick and I felt something wasn't right. Our home health nurse Dylan was scheduled to come access his port for the week and so we emailed our care coordinator, Chelsea, at clinic to ask if we could please schedule a CBC to be drawn. As it was late afternoon we told her to just let us know the result in the morning. Friday the 9th Nick woke up with horrible stomach cramps. Chelsea emailed us to let us know his counts were very low. His ANC was down to 200, as well as his platelets and hemoglobin being low. Bryan called in and spoke with her about the counts and the stomach pain but they said if we can make him comfortable at home we could stay home. He was running a fever right around 100' but it was holding steady. They said we should hold his at home oral chemo in order to allow his ANC to recover and to call if we had any other concerns. About an hour later Nick was throwing up and Bryan and I decided we really needed to take him in. As a parent of a cancer kid, this is one of the hardest things... there are lots of times we have asked for a CBC and all is fine, there is times I just want to take him up to clinic and have them make him feel better. It is honestly SCARY and STRESSFUL being the ones to decide what to do sometimes. We are lucky Nick is 14 and can tell us when he feels horrible- he is also very good at telling us when he needs to go in and has several times.
By around 11:00 am we were in clinic. After a quick set of vitals they started him on fluids. Within a half hour of getting there his fever started to climb and before we knew it he had a fever of 102'. So glad we were there so he could get his blood cultures drawn and a quick dose of Tylenol. They ran a few tests and quickly found out he was still positive for Influenza A, between that and the fever they decided to admit him for a night or two. They started him on antibiotics and got him in a room fairly quickly which was good. We also found out he tested positive for C-Diff which is a rough virus to that affects your GI tract and explained the horrible stomach cramping. He ended up staying Friday and Saturday night. Saturday I even got him to do a couple crafts, which he has never done while inpatient (because he was always so dang sick or depressed). He made a quick little bead and pipe cleaner snake as well as a pretty cool duck tape wallet. I hung out all day and Bryan spent the nights. Friday he was able to get both a platelet transfusion as well as a blood transfusion, which gave him a some energy so that was great. Sunday morning the plan was to release him by afternoon. He ended up getting a pretty serious nose bleed that required a nose clamp and a few tampons- lucky kid. He completely hates bloody noses, seriously he has told me multiple times that he would rather have 2 shots a day than have a bloody nose. They ended up giving him another platelet transfusion and he was discharged and we got home around 5:00 pm Sunday night. Monday was scary as he woke up feeling super weak and Bryan had to carry him up the stairs- our stress levels were on overload but luckily he seemed to perk up as the day went on. Tuesday afternoon while Bryan was at Alex's soccer game and then had gone to donate platelets Nick had another bloody nose that we got under control to only have another one start about 30 minutes later that we couldn't get under control. When I say bloody nose, it is literally dripping down his face nonstop if we don't have a wad of tissues blocking it- it is not a good feeling to not be able to get it to stop. After the second one started I called the on call Oncologist and explained what was going on. She had us come up directly to ICS instead of the the ER- which was awesome (we love not having to go to the ER). We got up there about 7:30 and I am so grateful my parents were able to meet us and help park my car while I got Nick inside. Hospital time is the worst as everything literally takes forever. He got platelets and a CBC and we got home about midnight.
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| Nick and his cool duck tape wallet!! |
Because they did the CBC at the end we found out about 11:30 pm that his hemoglobin was pretty low and he would definitely be needing some blood as well but I wasn't wanting to stay another 4-6 hours for that. His ANC had also tanked a little more and was now at 100. The next morning we decided to call Chelsea and schedule us to head back up to Primary Children's for blood. We got there about 11:00 and they did his type and cross and got the blood ordered pretty quickly, but it generally takes about 2 hours to get. During what ended up being almost a 4 hour wait for the blood we saw the nurse practitioner and an Oncologist about a rash Nick was developing and an ear being clogged. After a review of his new meds he was on for the two viruses it was decided it was most likely one of 2 antibiotics he was on or had been on inpatient that was causing the rash. The one he was still on for another week was changed in hopes of improving the rash and accompanying itch. It was by far the worst rash the kid has ever had and he has had his share during chemo. This rash covered his entire body and was so red and miserable looking. They even had dermatology send a couple doctors over to look at it, they verified it looked like a medication reaction. They were able to prescribe a pill and a cream to help with the itch but in all honesty Aveeno ended up helping the most. Gratefully the rash started to go away in a couple days, he still has some itch left but it really could have been much worse.
After 5 of 6 days spent at the hospital we were blessed to have a nice, quiet weekend at home watching basketball and enjoying all the upsets in the NCAA tournament. Nick started feeling better and his appetite picked back up so it was overall a pretty great weekend! YIPPEE!
Today- Monday March 19th was our regularly scheduled visit to clinic. Nick had his Vincristine chemo and the bisphosphonates infusion again for his bone inflammation in his legs. His CBC looked a lot better. He had rebounded to 700 on his ANC and both his Hemoglobin and Platelets were much better. They went ahead and restarted his daily oral chemo dose at half of where he was and will increase it slowly while keeping watch on his ANC. His legs are still doing amazingly better pain wise and we continue to be super excited for the relief as well as the hope of gaining back some leg strength so he can be more active.
We are so grateful he is doing better, it was a reminder that these little hiccups can happen during the rest of Maintenance as he is taking chemo every day. He has been very blessed to not have many issues with viruses as some kids experience a lot of issues with them during frontline treatment. Nick has a cancer friend that he can text with that can relate to his experiences and allow them to vent to one another when going thru some difficult times, I am so grateful for that. I am grateful for the cancer moms I know primarily on social media that are so loving and supportive to one another and allow me a place to feel entirely safe and understood. This is a pretty lonesome journey at times... Nick and I spend a lot of time together, I work and he does school but other than that we don't spend a lot of time with other people, its comforting to have some contact with others in the same boat for sure. I can't believe all the amazing moms and dads out there with childhood cancer fighters, angels and survivors! You all inspire and lift me everyday!
We are very grateful for some pretty great people in our lives that were able to help on a seconds notice: my parents visited in the hospital and brought us dinner the Sunday night Nick got released, my sister in law Bonnie picked Kate up from gymnastics for me on Saturday so I could go to the hospital during the day, my neighbors/friends Krista and Kristin helped with Kate both Friday afternoon into evening and Saturday afternoon into evening. These acts of service along with lots of love and prayers mean so much to us. Thank you from the bottom of our hearts. We are super glad to have this little not so fun excitement over with and pray Nick will continue to have more good days than bad.
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| I have collected a few more of these inpatient parent badges than I 'd like! :p |
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| Once a week I get this set up, Nicks meds for the week! |
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