A blog of sorts....I think....just using this as a space to share my raw emotions.
10/27/22
There is something about the beauty of a butterfly that has always appealed to me. This butterfly encompassing the leukemia ribbon just brings me some interesting comfort. Sometimes I am shocked by the weird things that comfort me while the "normal" ones make me uncomfortable.
We received the news late Wednesday that the chemotherapy is working. Tenzin's Bone Marrow Biopsy was negative for MRD (Minimal Residual Disease). The oncologist told me we needed to celebrate this news. In some ways it was a relief and I am thankful we are not currently discussing a bone marrow transplant. But in so many ways I feel like an extreme pessimist. All this really means is that we can continue into his next phase of chemo therapy. It's such a strange feeling of relief but also the looming feeling of despair still.
Tenzin has a long road ahead of him. I don't mean to come across as ungrateful for this news but I cannot take a sigh of relief yet and to be honest I am unsure if I ever will.
11/3/22
I figured it might be helpful to started dating some of these thoughts that I have lol. I woke up this morning with a list. A pile of papers and a list. School forms for my older one, school forms for my CK, medical bills to address, scanning to do so that I can get some financial help for the month's bills and a packet to complete and return today for financial assistance for copays that are not covered yet by Medicaid.
This binder has been my life saver and something I wish I never needed. From day 2 in the hospital I realized very quickly I needed an organized way to keep papers and information together. Now this way might not work for everyone but for me it has. It has a zipper and a handle. I am able to take this binder with us to appointments. There have been times I have need that one "form" that had I not had the binder would have been at home and caused just another list to take care of after clinic.
The reaction I get varies widely when people see this binder. I often get the "wow you're so organized" or the look of just complete disbelief. While yes I may appear organized, I am not sure how else I would avoid losing my mind when it came to easily accessing records, documents, bills etc. We were once admitted for 4 weeks and this binder was in my trunk....I felt lost.
The point of this I guess is that I have found my way of coping with the never ending list and pile. If there was one piece of advice I could offer a parent starting this unfortunate journey it would be:
" Find your way of coping and realize that it may change often"
Creating and maintaining this binder has allowed me to feel a sense of control in a situation that really screams chaos. I have no control over Tenzin's numbers, timeline, reaction to medication etc. But I do have control over how I handle the stressors that can and feel as though consume me. I am a doer and in situations of stress my comfort is getting things done and handled. When the situation changes or requires a bit of flex, having this level of control over things allows me to do so without feeling like I am losing my mind.
So I think my point to this morning rant is that even 5 months into this journey I am still finding my flow. But I will say it is getting easier to wake up and identify what needs to be done when I have a sense of the control I need to function. I think or hope other parents find some sense of "yeah that is me " or "she makes sense" in this little thought of the day.
11/9/22
Things continue to be so busy. Every time I think it slows down something comes up. Seems to be just part of this process. Tenzin had clinic yesterday for blood work and chemo. His numbers were not great so his chemo dose stayed the same rather than increasing. He needs to go back Friday to have his hemoglobin checked again as he was borderline and is scheduled for his g-tube on Tuesday. It is so hard waiting for numbers and holding your breath wondering if the "plan" will continue to be the plan. This morning we hit a snag with the pharmacy and his Marinol. I sat and cried to the pharmacist because we put in for the refill Monday and today is Wednesday and we are out of his medication. It cannot be called in any earlier since it is a controlled substance. This is the only medication that effectively keeps his nausea and vomiting at bay. It just turned into one of those frustrating mornings I wish we didn't experience. Still waiting to hear back.
I know I can't be the only mom experiencing these types of upsets. I think sometimes it just helps to know that <3
12/1/22
Well we made it through Thanksgiving. We basically function based on getting through certain milestone dates. Tenzin had his Gtube placed on 11/15/22 and was admitted for 2 days. It is crazy how triggering a scheduled hospital stay can be. Days before I found myself in a frenzy between cleaning, grocery shopping, doing laundry. All of this because I had this underlying fear that I was going to end up in the hospital for weeks like we have before. Fast forward to today and we are home and he is healing well.
Today I woke up to make holidays gifts for all of the nurses and teachers for both of my kiddos. Tenzin slept in so I was able to get quite a bit done. My to do list keeps growing and doesn't seem to end. I am currently on hold with Medicaid trying to get his coverage backdated for the correct dates. My next call is to Social Security to follow up as it has been almost 6 months since I applied. On top of this Tenzin's school tutor is here and I have to call back his school to schedule his newly approved services (speech, OT, PT and counseling).
12/8/22
I woke up so exhausted (as I do most days lets be real). Time is flying in so many ways but also feels like its dragging in others. Christmas is 17 days away which is nuts. Tenzin was placed on a chemo hold last week. HIs numbers were too low so he needed platelets and blood instead. Today he went in for bloodwork and his numbers (ANC) was not high enough to do the Methotrexate. He goes back next week for counts to see if he can get it then. He did get Vincristine today and will get PEG tomorrow. I was not anticipating tomorrow being an appointment date so it kind of of threw things off; kind of par for the course at this time.
Talked to his oncologist today and she wants to start Delayed Intensification right after Christmas which is good but also scary. I am excited he won't be starting until after so that we can get through the holiday BUT we have been warned this cycle will be hard. Paxton's birthday is New Years Eve and I am just hoping to not have any scares before then.
Tuesday morning I woke up with my brain moving in what felt like 17 directions at once. I have been thinking of ways to give back and show the hospital staff things that are missing for the parents. We were fortunate enough that the second day Tenzin was in the PICU I randomly ran into a client of mine. She insisted on getting us some items we needed in addition to some comfort items. She came back with two shopping bags full (flip flops for the shower, a huge variety of snacks, sleep masks, razors, shampoo, condition, bar of soap, a hair brush etc). All of the things that made me feel at least a little more human and less like I was falling apart on the inside AND outside. So.....I came up with a bag idea for "new to this situation parents". Sort of a starter pack or emergency bag. I included items that I felt could potentially make a parent feel just a little better in such a crappy situation. After buying all of the items I felt were necessary I realized it was a big expense ($80 ish dollars). I also included things that I wish I had and needed to order while in the hospital (hole puncher, coupon books for all of the different business cards I received, notebook, crossword puzzles, post its, and a laundry bag), It felt so good to finally get this together but then disappointment hit me. I realized it was an expense I will never be able to afford on my own to help families and then felt somewhat confused about how to go forward with my idea. For now it is packed and will be sitting in my home until I figure out how to make this happen.
1/1/23
I can't believe we made it through the holidays and new year. It didn't seem possible and looking back now it feels like it flew. Doesn't it always??? I have to say although I hosted Christmas Eve, Christmas Day, two birthdays and New Years Eve I feel more relaxed than usual. It is easier in a lot of ways to have family in the house rather than packing the kids up. Both boys were able to take breaks and retreat to their rooms when they needed breaks. I was able to enjoy my home that we only moved into less than a year ago in a way I wasn't sure would be possible. All in all it was a positive experience.
Tenzin was scheduled to start delayed intensification on 12/28/22. We went in for his bloodwork and chemo. Shortly after the bloodwork was taken we were told his ANC actually went down since this week before and he was unable to begin the cycle. Tenzin was thrilled because he just wanted to go home. I felt conflicted. In one respect I was relieved he wouldn't be feeling like garbage from chemo, but that pang of worry hit me that we are going another week without chemo. I am not sure that the trauma of his diagnosis will ever fully heal. I am fearful that this delay in chemo will cause the cancer to do something we don't want it to. It feels like I will never be able to let go of that fear. I know this is likely normal and something I just have to process through but sometimes I just want to say "Why should I have to?"
It is a really scary place to be especially for me who likes to plan. The unknown is a very unnerving thing for me. The past few days I have just been trying to enjoy Tenzin having energy and not feeling nauseas. I am finding it increasingly difficult though to let go of the inner anxiety of what it to come. I'm not even sure if my thoughts are making any sense but it just feels important that I acknowledge them and get them out.
1/13/2023
Happy Friday the 13th!!!
Tenzin made counts on Wednesday and officially started delayed intensification. He had his LP yesterday with intrathecal chemo. He has had I don't know how many of these since June and they still give me massive anxiety. He gets nervous about being put under and I always get nervous about the entire process. I stay with him in the room until he is asleep and each time I am overcome with a wave of sadness when I leave him in the room. I feel like I am reliving the first time each time. Even though logically I know that is not the case and he will be ok, there is a wound associated with the whole thing. The entire team down in the special procedures area makes the process as "light" and even sometimes fun for Tenzin. We sometimes even look forward to going just to see them. But each time the reminder of what we are there for and overall just how insane this life is hits me.
Tenzin also started Steroids again this week. We talked before starting because I wanted him to feel prepared for how he would feel on them. During induction the steroids made him puffy and very irritable. He is on day 3 of them and he is definitely feeling the effects. It is a lot easier to manage this time around. First because I have an idea what the expect and second he is listening and digesting information better than he was months ago. To know Tenzin, one must know what stubborn is lol. He is quite headstrong and stubborn. Induction was hard as it was such a whirlwind and giant loss of control for him. This time around he has control in certain areas of life and we are home managing rather than living in the hospital. Celebrating the small victories is how I can emotionally manage now a days.
1/18/23
Today was HARD!!! Emotionally and physically I am drained. Tenzin took his last dose of the steroid yesterday but the effects are lasting. He is irritable, frustrated and generally uncomfortable. Clinic visits are becoming more difficult because he just does not want to be there. I can't say I blame him but as an adult I am able to reason with myself enough to realize it just has to be done. The amount of times he said "I don't care" today was heart breaking. Simple things like transitioning from one room to the next took me physically dragging him there because he just was not compliant. What prompted the non compliance you might ask??? Running out of Lays Chips...ugh. I packed every single snack he has been eating but just didn't pack two bags of chips and of course THAT is all he wanted. There was no reasoning or bargaining that was going to work. He needed to just as my therapist says "feel the feels" and move on. De-accessing him was also a production as he becomes increasingly anxious as the steroids build in his system. He needed wait time, patience and some control today. All of which are difficult to establish with a child who is non compliant and unwilling to see reason. To my fellow moms going through similar struggles, I see you, I feel you and I think of you often. <3
1/26/23
Yesterday was HARD!!! And when I say hard I mean emotionally draining. The drained feeling that makes you want to take a nap once your adrenaline stops. For the last month, clinic visits have become increasingly difficult. When Tenzin began treatment we were in clinic upwards of 4-5 days of week. Now we are there weekly or twice a week. For an 8 year old boy this changes things for him. He is not as used to the routine, the nurses, the accessing, de-accessing etc. To add to this he has been on steroid pulses that just overall make him feel awful. Last week I wrote about how challenging his appointment was. Yesterday was worse and I met my breaking point. We arrived at 1015 for our 1030 appointment. Lidocaine was applied to Tenzin's port before leaving the house like always to ensure he would be numb. Well we waited over an hour to see a nurse and then they decided it was time to access him. Typically this happens within the first half of hour after arrival in the room we see the oncologist in. Yesterday the nurses changed that routine without explaining it to anyone and they accessed him in the chemo room. So right out the gate the timing was off and routine changed. Even with those hurdles Tenzin still complied. It wasn't until the nurse tried to clean his port that Tenzin expressed it was no longer numb. Now this is where I look back and become angry with myself. Right then and there I should have stopped things and requested Lidocaine but I didn't. The nurse told me based on how the site looked she felt he would still be numb. I feel like I failed Tenzin in that moment. I have taught my boys to speak up and to speak clearly; which he did. He was not heard and was not respected. This of course exacerbated the entire situation. So now picture the scene:
a nurse
a nurse assistant
a child life specialist (that the nurse called in and one in which Tenzin in not particularly fond of)
myself
and his other mom
5 adults standing over an 8 year old scared boy. Then we were told we had no other option he needed to be accessed and accessed now. SO 5 adults holding down my screaming, thrashing, cussing and crying child. He got accessed and cried in pain. I waited until the dressing was on and excused myself to cry. Not just tears, I was holding myself back from the type of cry you hear down a hall. I had finally had enough and as a mother felt as though it was time to speak up. I found the nurse practioner familiar with Tenzin and expressed my concerns. At first I got hit with "well this is part of his treatment and he has to do it". I told her it has nothing to do with treatment and has everything to do with a situation that has gone from my child calmy being accessed for months to now screaming, kicking and cursing. This is traumatic and not ok. She agreed after I made some points and called the nurse manager in. The nurse manager went as far as to tell me she has witnessed the changes in Tenzin and agrees that if we continue this way it will continue to get worse. He has 2 + years of this still.
Sooooo long story short, they heard me. We talked about some changes in how this can be done including keeping a routine, a timely access and some methods for calming him in the moment. I have to say that although I felt a bit better in that moment....I am scared. No I am angry and scared. As a mother I wanted to take my child home and never return. But I have to work with these people and trust that we can all figure out a plan.
To the families going through something similar I wish for continued strength in this impossible journey. I hope one day no other child will have to experience something so difficult but for now I hope we can find a better way to support one another.
2/2/23
I promise this is a positive thought....finally right?!
Also, I write how I talk and apparently I talk how I think. Apologies for that lol.
Anyway, yesterday was Tenzin's follow up clinic appointment for bloodwork to see what his counts looked like. I can tell you one thing....I did not expect them to be good. He had been sleeping so much (like up to 20 hours per day). Poor kids couldn't keep his eyes open for anything. Let me back up a bit. So in order to mentally prepare for the appointment I took the week between appointments to really reflect and plan. This included talking to Tenzin and his team multiple times to make sure we were all on the same page.
I will be honest I was heated for a few days and really needed to get my emotions in check. That natural parental urge to protect your offspring can be really hard to manage sometimes. But I got myself together. So we all agreed on a few things:
1. Tenzin would be accessed in the typical room within the first 30 minutes of being in clinic
2. The nurse manager ordered this little busy bee item that we wanted to try and see if it helped in any way (link below)
https://www.buzzy4shots.com.au/
3. A prescription for Ativan would be called in and I could give it to Tenzin via g-tube before leaving the house. This was to lessen his anxiety.
4. The least amount of adults would be in the room as possible
This plan worked for me and I reviewed it with Tenzin. He was on board. Now the day leading up to the appointment he started to express worry. We talked about how to work through that and I reassured him the plan was in place and everyone was on board.
So yesterday morning I gave him a bath, got him in his favorite onesie, applied Lidocain and gave him the Ativan. We got in the car and the general mood was actually calm. The medical team followed through on their end as well. Tenzin was able to be accessed with just verbal cues. No hands needed to be anywhere on him and he didn't even shed a tear. I breathed a sigh of relief and felt as though we climbed the mountain and got to the top. Hoping to stay there for a while. The outcome of his bloodwork showed his counts are borderline and he may need a blood transfusion of some type before the weekend. We are due back Friday to see if that will be needed. Cross your fingers for us.
2/17/23
Well quite a bit has transpired since my last entry. I probably should be updating this more frequently. Tenzin is midway through Delayed intensification. He did end up with Cellulitis in his stomach which was really uncomfortable. He did not sleep through the night for almost 2 weeks. Both he and I were exhausted. As of today he is much better and off the antibiotics. This week Tenzin ended up needing blood as his Hemoglobin dropped. This was somewhat expected at this stage of his treatment cycle. It seems since he received blood he is overall much more himself.
3/3/23
It's Sunday and I finally have a moment to catch up. Some days I really feel like I wake up running on empty. Something I am trying to work on is pouring into my own cup. Often times I am so worried about everyone else I forget that I matter too. I think that is common as moms but especially common when you have a sick child. I struggle with some guilty feelings when it comes to focusing on myself because I feel as though my job right now is to focus on the Tenzin's health, Paxton's day to day needs, keeping a roof over our heads and everyone's belly's full (including the 11 pets we have) lol.
My day typically starts with one of our cats pawing at my face or crying at me to wake up and feed them. Then its our dog Jasper who needs to go outside; mostly to pee but often to sniff the entire yard until he is satisfied. Once I let Jasper out the ducks starts literally yelling at me to come out and change their water. They truly are thrilled with fresh water; it legit rocks their little worlds. Then its changing the cat litter, starting laundry and on and on it goes. Most days we are also on a schedule to get into clinic shortly after Paxton needs to be on the bus. So I wake up with a list before I even step out of bed. And although I love every breathing being in and out of my house that I take care of; sometimes it just seems like so much. I am finding that a lot of that feeling comes from me feeling like I am just running on empty and that needs to change.
I find myself saying this often. I get into a groove and start to feel a bit better and then something either changes with Tenzin's treatment, the way he feels or the schedule completely adjusts. It is hard to allow myself to fall into a pattern when there really isn't one long enough to feel comfortable in it. I think I just need to continue embracing the day to day and just do the best I can. And although I am writing this now; I am sure at some point the guilty feelings of not doing or being enough will creep in again. Patience with myself is my new focus. I like to think I am not alone in that struggle.
3/14/23
It is crazy how in just 11 days things have transpired that no one can really predict. Tenzin was admitted on 3/8/23. He had a long day of chemo on 3/7/23 including Vincristine and PEG. He also needed Hemoglobin at that visit. His bloodwork showed that number tanked also. I wasn't too surprised as his kept complaining of being light headed at home. During the appointment he did well but his temperature was all over the place. I was quietly panicking inside thinking we may be admitted right from clinic. BUT his temperature finally regulated and by 4pm (we arrived at 8:45 am) we were able to go home. Days like that are always draining and a big triggering as that means I am unable to be home for Paxton's bus. He really does not like that. I think we all have a bit of PTSD from the number of hospitalizations and the length of his stays.
Anyway, Wednesday morning Tenzin woke up groggy but also in pain. His Gtube site had only what I can describe as a blister on the surface. I monitored it and took his temp.....99.6. Ok....time to take off his hat and socks and get him cooled off. My hope was that he was so bundled up and it made him warm. I already left a message with the oncology team at that point due to what his gtube site looked like. Took his temp again....99.1. Ok great going down. I felt some relief. Now this was all before Paxton was leaving for school so he had some idea that there might be a need for us to go in for an unscheduled clinic visit and I prepared him for the potential that I may not be home after school.
Let me also add that by this time we are also about 2 1/2 weeks into some constipation issues for Tenzin and were working on a bowel regimen to rectify that. Constipation was one of my biggest fears for him when we started treatment and something we had been able to keep under control under Delayed Intensification started. The poor kids stomach became so distended he could barely sit up without pain. So now add that to this weird blister forming on his gtube site and the kid was really uncomfortable.
So now Paxton is off to school and I am waiting to hear back from the team. The NP calls with his main oncologist on speaker. She says "he is going to spike, take him to the ER ASAP". Ok we all know the drill for that in this house. Grab the packed bags from the garage and brushes his teeth and changes his clothes. I wish I could say I was the picture of calm and collected while doing this but I will venture to say I am not. I don't think I panic but I rush around because to me time is of the essence. As a mom of a CK I know that once a fever spikes it is very important that he get those antibiotics right away. Thankfully since Tenzin had been in clinic the day before he was also accessed at his port and there was no stress about that.
Now I am unsure if I have mentioned this before but we have animals; 11 total. We have 1 dog (Jasper), 5 cats (Thumbz, Pretzel, Coco, Little and Ziggy) and 5 ducks (Luca, Meep, Beeker, Fiesty and Nibbles). So leaving my house requires just some additional thought in terms of who has been fed, taken outside and are the litters clean. Soooo those things get done before we leave as well. On the way to the hospital I call Paxton's school and they patch me into his room. I always try to do this when any plans change as he is a kid who likes to know what is going on. I spoke to his teacher first and then Paxton to let them know I was taking Tenzin in and would give an update on dismissal once I had more information (This was around 1030 am).
Once Tenzin and I arrive to the ER, he is placed into a room and they immediately start him on fluids and order the broad spectrum antibiotics (Cefepime) and draw labs. They are looking to see what his ANC looks like along with his hemoglobin and platelets. We have been through this a few times now so we know the drill and it is oddly comforting being in the hospital. It feels as though he is right where he belongs in that moment because I know those meds will help. Tenzin is so used to this routine now he just gets into the bed, asks for a blanket and starts to watch something on his phone. Child life always pops in to see if he or I need anything. Their familiar faces are also comforting in those moments. Tenzin's fever does spike (38.6 C which is 101.4 F) and they give him Tylenol as well. It is at that moment that I brace myself for the words YOU WILL BE ADMITTED. Shortly after the doctor comes to examine him and the bloodwork returns we do hear those words. His ANC did go down so it was necessary as he was very neutropenic.
So while the antibiotics ran we waited for a bed on the oncology floor to become available. Once it did we were brought upstairs and settled into our home for the next 5 days. Tenzin ended up having an infection at his gtube site that was brought on by his neutrophils dropping to almost 0. Within days the antibiotics worked (3xday) and we started to see progression. At first the site looked worse but the drs explained that would happen as his white counts came up. By day 5 the site had cleared up significantly. We had some sleepless nights as it healed though because it was painful. In order to address his constipation we did a very intense bowel regimen in the hospital which for obvious reasons was not the most comfortable for Tenzin but did the trick. His stomach slowly started to look normal again and he was able to start walking around with little pain.
Now in true Tenzin fashion he did put up a good fight for the PT who we love dearly. She came the day before he was being discharged because he was walking on his toes quite a bit and complaining that his calves were right. We needed her expertise to get him back down off those toes and to loosen his muscles. At first he flat out refused to work with her and I am not going to lie it felt as though we had taken a few steps backwards at that point. BUT....he finally admitted he was "trying to make us all suffer" by not complying at first lol. This kid is quite the personality. That evening Tenzin and I walked the hospital floor about 6 times. He was on his heels and just about running ahead of me. He even made a walking friend with a little girl on the floor. It was adorable.
There were some changes to the policies at the hospital for the better this stay. The Ronald McDonald room was open in the later afternoon for the parents and visitors 12 and over were welcome. Paxton being 11 going on 12 he was able to come up and visit. He and Tenzin got to play together in the playroom and he was able to visit the room we stay in. I have to say after 5 hospital stays and most of them being lengthy; this meant so much to us. To know that Pax had the option to come and spend time with us meant the world.
By late Sunday Tenzin was discharged from the hospital and sent home on the antibiotics 3xday to continue treating his gtube site. Fevers were gone since day 1 in the hospital and his counts recovered pretty well. We have a follow up with oncology on Weds to see how his counts are. He may need platelets as they were somewhat low before leaving the hospital but who knows they may increase while he is home.
3/19/23
I've gone back and forth with myself over the last few days about this post. I wasn't sure if I would even write it but my mind is consumed. And I would like to start by saying I do not enjoy complaining. I actually really am uncomfortable with conflict but when it comes to my kids don't push me. I think that is most moms but when you are a medical mom it is harder to control. I am constantly fighting back the need to protect with the logical side of my brain who knows how to listen and process information.
So here goes...let me set the scene
It is our Wednesday morning clinic visit; the first since he was hospitalized and came home. He looks vastly different as he has lost some weight that had him looking very puffy and he was getting around a bit better. Not to mention his overall mood was generally good. The best it could be for a child waiting to have his port accessed and wondering if we'd be there for 30 minutes or 6 hours. So the routine goes:
Height/weight/vitals, then we are assigned a room to wait for accessing and meeting with the doctor. These rooms are ALWAYS hot. Anyway so the NP comes in asking a million questions, nurse comes in to begin the access process all while Tenzin is half listening with headphones over one ear while he watches YOU TUBE.
So the nurse accessed his port, draws the blood and dresses it. I will also note that he had to have his port needle increased recently and we only found that out by the smaller one not fitting causing him to be stuck a number of times. NO FUN! So accessing although better is still a source of anxiety and stress. We talk a little with the NP about how he has been since discharge and review meds. We then go over how although his Gtube site looks better it is still painful for him. He is still on antibiotics at this time and it is assumed we need to continue those for the infection to clear up.
There has been no calm, no consistency, no moment to catch our breath its right to a laundry list of things
- tube out
- feeding therapy
- no more port access
- school
all with no direction.
As I sit back and reflect on this I have decided there will be no immediate action taken. This is a journey that has taken 10 months to get to where we are and will likely take just as long if not more to get somewhere new.
4/28/23
So in true unpredictable life fashion I lost about 3 entries that I poured my heart into over the last month and a half or so. After freaking out as I often do I spoke with a dear friend. Her suggestion was to continue on as if those entries were not lost so that I can get my current thoughts and feelings out. SO that is what I will do.
Well today marked the last day of a full week of IV chemo for Tenzin. Halleluiah because that was exhausting. I don't think I will ever convey in words how truly daunting this all can be. Sometimes I wonder if the emotional strain is worse than the physical. Tenzin himself has been very tired. He has been sleeping in and falling asleep wherever his little tired body lies. I have been emotionally draining myself. I haven't slept well, I read into every moment of his pain or discomfort and I worry constantly. Now I have seen my therapist and psychiatrist so that is handled. I am fully aware of how unhelpful this worry is and very much able to talk myself down. BUT it is still there....lying underneath the "together" person that people see.
In addition to chemo this week we discussed moving forward with an MRI. Tenzin has been complaining of foot/ankle pain for about 2 months now. Initially we all figured it was due to him becoming more active. It is a pain that comes and goes. Some days he is fine and others he can barely walk. So we had an X-ray and it revealed no fractures....thank goodness. But after continued pain the doctor recommended an MRI. Now I knew what she meant right away because part of my worry has always been the potential for AVN. Due to the steroid pulses on his treatment plan it was always something I educated myself about. AVN scares me....I think I am just intimated by the idea of it because it means the potential side effects of treatment are now a real "potential reality".
This week also brought some taste and appetite changes for Tenzin. The IV chemo has made all of his favorite foods taste different and unappealing. I mean to the point that he is so excited to eat his favorite foods and then just cannot stomach them. So we are on a diet of Ruffles chips and Gummy sharks at the moment.....awesome lol. This week also brought a bright moment on a hunt for said Gummy sharks. While stopping at 7eleven we saw a lone goose. Tenzin asked to feed it....bless his animal loving heart. And to be honest the goose was a lovely sight since our recent visits to 7eleven have involved seeing lots and lots of homeless people begging for money. Life is just weird and sad sometimes.
5/9/23
Holy Moly it's May. Time flew out of nowhere. I sat down to write this on 5/2/23 and barely got a sentence out. Tenzin's 9th birthday was on 5/4/23 and like all kids birthdays it was a whirlwind. With this being Tenzin's first birthday since diagnosis I wanted to make sure it was truly what he wanted. This was a big deal to me and to him. His appointment for count checks was in clinic the day before his birthday, Unfortunately he started fighting a cold that morning and his counts we low. ANC and platelets both low but not enough to do anything other than give it time to recover. SO we went home and prepared for his birthday. He requested a dinner at his favorite spot- Applebees with a Minecraft cake. Then we discussed having family and a few close friends over at the house outside on Saturday and Sunday he wanted to go to Dave and Busters. Of course all activities were done with extreme caution such as hand wiping, sanitizing, masks, bathing etc. All in all he has a great weekend of cake, celebrating and laughs. It was so nice to see him be a kid for once; worry free for a few hours. He has developed a bond with my 9 month old nephew that is so wonderful to watch grow. My nephew was born in July which was in the beginning stages of Tenzin's treatments. He really was disinterested at that point mostly because he just felt like crap. But now he loves to make him laugh and interact. It truly makes my heart so happy.
continuation of 5/9/23
Of course this week was so full I forgot to mention one of the biggest moments. The boys rooms were made over. This was a process we started back in the fall. Between hiccups with Tenzin's treatment and furniture back ordering we were delayed a few times. The timing ended up really working out though as they completed the rooms (well Tenzin's room) on his birthday. Paxton's was 95% done just missing his bedframe due to some mix up. But either way this was very exciting for the boys and truly something that allowed us top focus on something positive. Their rooms have become their safe zones. Both boys love to game but also really need their own space. At times we are all together and on top of each other and other times (and this sometimes can be individually) we need space to regroup, process or just be alone. I am so happy I have been able to give the boys a home all of these years with their own rooms. We have moved a total of 4 times in 7 years. Each time (unfortunately not by my choice- landlords and COVID sucked) we have upgraded. Our home now has a huge yard, bedrooms for all of us, a great kitchen, living room and a basement. Back in 2016 our first place was a one bedroom apartment. The boys had a huge room to share (they were 4 and 2 with bunkbeds). We had a galley kitchen, bathroom and living room. I made my bedroom from an outcove that was meant to be a dinette. We made it work and were truly happy there for years. Looking back I have some of my fondest memories in that place. We had a pool in the summers which made for a great place to invite friends and family. We didn't need much then and really we don't need much now. If we had to we could do that again BUT I am proud I am able to give them more currently.
5/14/23
Happy Mothers Day! It is currently 6:43 am where I live and I am outside enjoying my yard before anyone else is awake. Let's be real as a mother I am also trying to soak up every second of relaxation I can get even if that is at this ridiculous time. AND in true life fashion my computer died while writing this and the cats started crying to food. So now it is 7:08 am and I am back on my deck sitting down to do this again.
As I reflect on last Mothers Day I find myself not able to even remember what we did. I am not sure if I am just losing it or it is too close to the time that Tenzin took a turn and really started to show signs of illness. Either way I am focusing on starting this Mothers Day off so that I can remember it (if not I can just look back here lol). It is weird and also kind of sad how dates and time can really leave these marks on us. I almost feel like Tenzin's birthday last year is the last thing I remember "pre-diagnosis" and I low key hate it. Mid May 2022 to June 2nd 2022 (D Day) is a real blur with these snapshots of life. I think they call that trauma and likely something I will be addressing in therapy as we leave this ugly stage of life. My therapist says it's something that we can work through but not right now. We are too in it right now and I wouldn't be able to do the real work needed. Anyway, one day I will sit down and write out the weeks leading up to diagnosis. Probably in the next entry or two. I assume (probably shouldn't) that it might be healing. But I also think it will be informative for others. Cancer was not anything even close to what we thought we were dealing with. Unfortunately for most parents in this situation it's not until it just is.
5/21/23
So today I actually felt a little more like myself than I have in a long time. It's funny how something as simple as getting up a little earlier and taking the time for yourself makes such a difference. I am typically running around taking care of everyone else and don't leave much time for myself. Often I am running out with wet hair or a hat. Today I decided I needed to feel put together. All we did was go to church like we do most Sundays. I have been feeling pretty off the last week; allergies and PMS are not a great combo lol. I didn't allow myself to get distracted with other things and dedicated an hour to myself before church. I will say the independence of an almost 12 year old and 9 year old makes a huge difference. Tenzin did regress quite a bit the first few months on chemo and needed significant help with daily tasks like bathing, dressing etc. Currently we are on a good run of progress in that category and he can mostly get himself dressed, teeth brushed and laceless shoes on himself. Due to this progress I am trying to regain a little bit of myself back. I think as parents we naturally lose some of ourselves taking care of our children. They become our lives. I was always ok with that because with each stage of growth in the boys there was a change in some of what I could regain for myself. Once Tenzin was discharged home after his first hospitalization at diagnosis we took quite a few steps backwards. Tenzin was unable to navigate our home on his own. He needed assistance on the stairs, getting onto and off the couch, in and out of the bath....everything. I am not sure one can really be prepared to experience the regression in your child. Chemo was necessary and something seen as helping him BUT it also takes so much from these kids. It is very hard to be in the moment watching a child lose control of their entire life. The most basic and enjoyable activities for him became difficult and painful. I didn't really even process any of this because at the time it was just what needed to be done. And in some ways I do think I didn't want him to feel "different" so I just jumped to action, adapted the home and did what was needed. Looking back it is so painful to remember those months. It's almost like it was done and we were onto the next phase before I was even able to notice what was happening. It is a very confusing and emotionally draining place to be as a parent. So as I am enjoying feeling human today I am also grateful for where we are. Tenzin is in a place where I can take time to get myself together which in turn makes me a better mom for both of my kiddos.
5/26/23
Wow the last few days have been a whirlwind. The boys Elementary School Student Council put together a walk of support for the Thursday before Memorial Day break. When I was told about the walk I left it up in the air if we would be able to attend. Sometimes events like this can really turn Tenzin off as he is not a big fan of attention. But in the last few weeks he has started to really connect with some local kids through small playdates. Man can I tell you how important that has been for him. It took us time to get there. Tenzin was not in a place even 2 months ago to socialize. He would say he didn't need friends or that he didn't care about having friends. Obviously I knew that was not true but I also recognized that he needed time to process his feelings and WANT to socialize. When I think about the last year for Tenzin I absolutely understand his hesitance to spend time with others. What makes this more complicated is that we moved right before diagnosis so he didn't even get to attend this school prior to getting sick.
Since December I have veen taking Tenzin to the elementary school for his services. He receives OT, PT, Speech and counseling all due to side effects from chemo. We go once a day for 30 minutes for services. He has had the opportunity through this to get to know the security guard, front desk, principal and slowly some children at the school. Everyone knows of Tenzin in the school. He initially didn't like this. Now it makes him feel welcome and not like an outcast.
The walk was beyond what I could have imagined. The entire school came out and walked laps around the school. They had posters, music and were chanting "Team Tenzin" the entire time. I have to be honest I was taken aback and couldn't control my tears at first. Tenzin even walked with the class he would have been in had he attended school this year. I could not believe it. He has come so far. I am so happy I listened to my child. Tenzin has been very vocal about his feelings and wants throughout treatment. I have had to advocate for him as often times adults seem to think they know better. This picture would not have been possible had Tenzin not been given the ability to follow his own timeline.
So basically my mommy/advocate heart is so full. I see my son forging relationships in a way I truly was not sure would be possible. This journey is hard emotionally. There are so many ups and downs. Riding the waves is the only way to go about it to maintain sanity.
5/30/23
My yard has become this serene place where I can go and feel like I am immersed in beautiful nature. We have this cardinal that appeared about 2 weeks ago and has claimed our yard as his home. He hangs out in our grape vines and mostly on our trampoline. I realized last week that his female counterpart has now also claimed our yard as her home. I love to watch their natural ways. They hop, flit and fly around in what I can only describe as pure naïve happiness. Something I find myself actually feeling jealous of. Additionally I always find a cardinal comforting since I was told it is a sign of a passed loved one visiting. I like to think that is my dad I lost going on 8 years ago to colon cancer.
Seeing my yard develop over the last month has been such a joy. I watched as the trees grew full, pollen was dumped everywhere (not fun for my eyes) and creatures appeared from what seems like out of nowhere. It is when I am out there that I find myself creating these stories of the creatures I see and where they may have been. Then when I realize that is what I am doing I giggle at myself because 20 year old me would have found this so hokey and 40 year old me adores it. But also the realistic side of my brain then starts to think I may be enjoying this so much now due to forced change in perspective. Last year at this time I spent barely anytime outside as Tenzin was on the couch or in his bed sleeping for hours on end.
6/3/23
Today marks 1 year!!! One year ago Tenzin began his fight to beat cancer. One year ago he started chemo therapy. One year ago our lives changed in a way we never could have expected. In some ways this last year feels like it has dragged and in others it just feels like it flew. I remember thinking how far away a year seemed. I was barely handling things hour by hour back then. And although now sometimes a day seems too hard to face; it is far better than it was. It really is true what they say. It is a journey, a process and something you really can't control. For someone who likes to plan and prepare this was a hard pill to swallow. Some days it still is. When I reflect and really think about what this journey's purpose might be I find myself coming back to this very idea. Maybe all of this pain and struggle is to teach us something. Maybe we are better in the end having gone through this. I am not sure if this is me just trying to make myself feel better or if this is truly the purpose. Likely I will never know. I can say though through all of the struggle there a has been growth. Through all of the pain there have been gains. Some days I just feel so grateful to be able to withstand all of it. Some days I remind myself that my most important role in life is to be a mother to my children. And my new role has been to be a mother to a child with cancer and a child whose brother has cancer. Throughout the past year we have grown closer than I could have imagined. I find myself appreciating moments that in the past would have seemed trivial. The normal hustle and bustle of our lives prior to Tenzin's diagnosis often had me feeling like I wasn't enjoying anything. I worked non stop and spent my time making sure the kids go to where they needed to. Now I find myself appreciating the smaller moments because at one time I wasn't sure if I'd have those with both of my boys. I remember so clearly a day I was sitting in the car with Tenzin very early on into his treatment. He was so skinny and not feeling well but was cracking his same old jokes. I just sat there and thought to myself "enjoy this because you don't know how many more moments like this you will get". Probably one of the most heart wrenching feelings and thoughts I have ever had. It took a lot for me to keep my emotions under control as those thoughts crossed my mind and my 8 year old told me another "dad joke". Now when I look back at that picture of him in the hospital bed on his first day of chemo and then at the next picture of us last weekend I am just so thankful we have had a year of beautiful moments. A year ago I never could have predicted where we would be. And I remember feeling so angry about that. But again this is a journey that although we didn't walk into willingly; we are walking through it with grace.
6/21/23
The month of June is just crazy. End of school year activities, normal every day life added to having a sick child is quite the combination.
In the recent weeks we have also had
- the vet because Jasper our almost 13 year old pup looked to have ring worm. Thank Goodness t wasn't but his skin still needed to be treated which required an appointment, medication, a follow up and then of course immunizations because he was not up to date
- the dentist for Paxton which was rescheduled twice due to conflicts with Tenzin's medical appointments. Paxton is a serious tooth brusher and NEVER gas issues- Halleluiah for that! But all of his molars are in or coming in so his teeth needed to be sealed. And of course that was not covered by insurance since he had it done once at 7.
- a 5th grade field trip to the science museum. I was lucky enough to be able to attend with Paxton. That was really important to him.
- a car appointment for new tires, an alignment and an oil change. I hate doing this but it needed to be done. Tenzin and I dropped the car and walked home. Thankfully Mavis is within walking distance and we have a wagon. I should say I walked; Tenzin sat and I pulled him along lol.
- field day which was adorable and exciting as it was Paxton's last one in Elementary School. He and his classmates have such a special bond. His teacher is amazing. He has grown so much this year as a student but also as a person it is beautiful to watch.
- a class party because Paxton is graduating 5th grade!!!! Cue my tears. But in all seriousness it was so much fun engaging with the kids and parents.
- OT,PT and counseling weekly at the school for Tenzin. These will end in summer so this is his final week. The services have been extremely helpful but we are looking forward to a little less running around.
- camp forms that needed to be completed and returned so that the boys can attend camp. Paxton will be going to Sunrise camp again this summer. He went last year and really enjoyed it. Tenzin is signed up but is unsure if he will be attending. He is hesitant as it would be a totally new environment for him. WE shall see.
- weekly trumpet (for Paxton, Piano (for Tenzin) and private karate lessons (for both)
- regular clinic appointments to check bloodwork which requires accessing. Tenzin is handling those so much better now that we have a great routine with the nurses.
- a neuropsych eval that we have waited months for. This also had been rescheduled a number of times due to conflicts with medical appointments.
- an orthopedic appointment to follow up on the developing AVN in Tenzin's foot
- computer crashes needing repairs. This one is a biggie. Both boys are big into gaming. It is an outlet for them but also a huge way they are able to socialize with peers. Paxton's computer decided last week seemed to be a good time to just stop working. I trouble shooted with the company a number of times as well as followed their You-Tube videos on how to rectify most problems. After a full day doing this I had to call someone. A new motherboard is the solution.
- a wrestling event fundraiser for my family and Taylor's Hope. Can I just say what an incredible event. So much fun to watch and be a part of. The wrestlers were extremely kind to Tenzin. You could see how happy they were to be doing an event like this.
- medication refills and appointments for everyone in this house (because we all take medication and it is not pretty if we don't = )
- a limping non laying duck. Now this is not exactly new. She was seen a few months ago at the vet. She was impacted and received some medication to get her to lay. The vet indicated there was really not much to be done. She does lay an egg here and there so I am ok with that. Her little waddle is a bit slower than the rest but she is just as happy. She forages all day and bops her head around just like the others. It's just something I am monitoring
- playdates and BBQ's with new friends that we are so thankful for. Moving before Tenzin's diagnosis was not easy but we have been fortunate enough to meet some patient and understanding people. Tenzin now seeks out time with these friends. He told me the other day "Some days I feel like a regular kid not like I have cancer". Oh my heart with that one.
- our dog Jasper who is almost 13 lays around most of the day. But he does get his puppy energy at times. My biggest struggle with him is that I have to keep him from downing all of the cat food. He will eat it and then vomit; not my favorite thing to clean up.
- Fathers Day which is a day in my family that can be difficult. My dad passed from colon cancer 8 years ago this August. I find myself a bit more on edge around holidays that remind me of my dad passing. I think of him daily and truly feel that he is watching over our family. But the pang of sadness on these "special" days can be a lot.
- We saw the Flash Movie also. Tenzin was so excited and was counting down the days until we saw it. Anyone who knows him knows he is a major Flash fan.
Today we are starting 85 day protocol for maintenance cycle again today. Wish us luck.
As we speak my laptop is making some weird angry noises that I am just choosing to ignore. I'm not sure I can handle another "task" at the moment.
7/6/23
Wow I can't believe we are already in July. Time really flies.
So, it is actually the morning 7/10/23 now lol.
Apparently, I can't get tasks done that I intend do and instead bury myself in housework or end up at doctor appointments. I actually feel like I have been a bit distracted the last few weeks. In some ways they are good distractions such as setting up our blow-up pool for use and maintaining all of the flowers my mom insists, I need lol (I actually love them). I have found myself getting lost in those kinds of outdoor activities. I didn't have that opportunity last year at this time as Tenzin was in the very beginning of treatment. So, it is a blessing to be able to get lost in something I have grown to enjoy this year. But as I learn this new balance there are things that always come up. This last week Tenzin's counts took a major hit. He is neutropenic, blood and platelets dropped, and his g tube area started to look icky again. We started antibiotics to treat the area rather than waiting for it to get bad again. Since he is neutropenic the fear was if we let it go, he would end up with a fever and would need to be admitted. His chemo medication is also on hold now. So we pause for a week, allow his counts to hopefully recover and see where his bloodwork lands on Wednesday. The proactive approach this time is comforting, and I am thankful. BUT it is one of those moments where my brain goes "right we are still in this fight and things can take a turn very quickly". There are times that Tenzin feels good and actually has started to look good enough to "forget" cancer for a moment. He told me the other day when looking in the mirror "Mom I look like the old Tenzin, the Tenzin before cancer". And as much as I was happy to hear him say that and know he truly meant it; it also broke my heart. NO child should ever have to utter those words. The reality of the cancer hits different when your child's feelings about it all start to come out. And we all know kids don't have filters and say exactly what is on their minds. That is the beauty of being young. But there is a burden in being "old".
Onto a new week we go.
7/27/23
"Emotional Lability: Sudden changes in mood, worsening mood, dysphoric mood, crying spells. Irritability, agitation, anxiety, nervousness. Flu like symptoms: headaches, muscle pain, shivers, fatigue, weakness, excessive sweating. Insomnia, nightmares, unusual or vivid dreams" all side effects of stopping my one medication abruptly as described by https://www.alternativemeds.com
Above are the side effects of abruptly stopping the medication I am on. Unfortunately, I am experiencing quite a bit of them at the moment. And no, I did not stop my meds on my own accord. I have been forced to go without due to a "manufacturing shortage" or some BS.
When I requested the refill of my medication (in a timely manner I might add) my pharmacy accepted the request. When I arrived to pick it up the following day (the day before I ran out) I was told the medication needed to be ordered and should be ready the next day. Not ideal but you do what you gotta do right?! Well the next day rolls around and I arrive to pick up my meds. I was then informed that the order did not come in. OK well now I am out of luck for the day. This is a medication I take every morning. So I braced myself for a rough day. I knew to expect some increased sadness (as unfortunately this has happened to me before when refilling the medication) and a possible headache. I was slapped in the face with intense fatigue. I was sitting in the clinic waiting for Tenzin's bloodwork barely able to keep my eyes open. Little did I know that was another uncomfortable side effect. I decided I would show myself grace and take it slow. I tried not to expect much of myself and realize that I may just feel off for the day. I called the pharmacy later in the day to check in and make sure my medication would be ready before closing to then be told there was a "manufacturers shortage". Cue the racing thoughts on wtf to do with this. So I contacted my dr requesting a solution. He said it would be best to have him send the script to another pharmacy....so I did. The next morning (today) I get an alert from CVS that it is "too early" to refill my medication. Ummmmmmmm what???? So now this is day 2 of feeling completely unlike myself, extremely tired, massive headache and crying at the drop of a hat. I contact my dr again who asks me to find out if the original pharmacy can fill a lesser dose of the same medication. Reluctantly I call the pharmacy and I am told "well now we found out the medication will be in by tomorrow" but that if I need it today they can send the script back to the dr so that he can send it to the other pharmacy. At this point I don't even know if the second pharmacy has the medication. So here I am frozen unsure what decision to make. Why is this something I am even doing???? I just want to NOT feel like I do right now. Not to mention not one person has validated the fact that it IS NOT OK to abruptly stop any kind of antidepressant and that a dr typically would help a patient slowly come off. But because there is some kind of manufacturer or order issue I am just supposed to be ok with what is going on?! NO I am not and why am I the one trying to figure out the solution without guidance? Something is very wrong here. To make matters worse do you know where my brain starts to go? "Oh Colleen you're being over dramatic, suck it up, don't make a big deal, if you piss someone off they may not help you" and on and on the thoughts go.
We are so messed up in the way we treat people with any kind of mental illness. I don't even like saying that. Mental illness what does that even mean? I sit and remind myself there is a chemical imbalance in my brain that I am not in control of. I have tried for years to work on this without medication and instead with therapy, reframing my thoughts, meditation, exercise all of it. At the end of the day the imbalance I have is best fixed with a medication mixed with those other solutions. And what's crazy is that any professional would tell you to handle a mental illness in the way you know how and with the tools that have been proven to work for you. But how does one do that when medication is so far out of their control. Now add the fact that for over a year I have been handling a diagnosis of my child that has traumatized me. And any person who has experienced a loved one with cancer knows that trauma. All you are told is "make sure to take care of you", "use your resources". "don't be afraid to ask for help" etc. I have done my best to keep up with weekly individual therapy for myself and psychiatry appointments to maintain my medication to stay ahead of this consuming me. I have been doing everything that I am told and suggested by the professionals. Yet here I am unfairly withdrawing because of a shit system that apparently won't or can't be fixed.
7/31/23
Well that last post was a lot huh? lol I have my meds now and feel much better.
Tenzin started PT again through insurance today. He did NOT like it. And in true Tenzin fashion he refused to comply with certain tasks. It can be so difficult as a parent to sit back and observe this. It brings back all of the issues from when he was first diagnosed. He is a smart kid and realizes that there are things he cannot do that he was able to pre-cancer. How unfair is that? I can't even imagine how frustrating that must be. As an adult I can rationalize it all but at 9...no way. And this is what I think adults seem to forget. He isn't just a cancer patient; he is a growing 9-year-old boy who also has cancer. Childhood was not meant for this kind of challenge. And although most adults working with him do try to be patient and understanding; the level of trust and time that is needed just does not lend itself to the situation at hand.
8/23/23
I am struggling to get myself consistently on here. We have just been running around a lot so sitting down at the computer has been a challenge.
I really wanted to be updating at least every 2 weeks but clearly that goal has not been met lol. It is bizarre sometimes how fast time goes. Something I have really taken to over the last few months has been puzzles. They somehow keep me from overthinking like I usually do. I have also become quite the true crime pod cast fan. These podcasts feed my ever-moving brain the input it needs without overwhelming it.
3 must listen podcasts if you haven't already are:
- crime junkie- literally the best true crime podcast around.
- the deck- this true crime format is so cool and quite a learning experience for me.
- something was wrong- this one especially has been quite healing for me. This podcast explores the crazy things that go on in relationships between family, friends and partners. I have been through some mind-boggling scenarios returning to dating after marriage. This podcast made me realize how much of what I have gone through was not only not my fault but also traumatic.
I learned of a newly diagnosed child at our hospital a few days ago. i was able to connect with the mom. She will be in the hospital with her daughter for 36 days at the least and has a 2-year-old at home. My heart sank for her. I wanted to do anything I could to help her. I offered some of my "cancer mom experience" and asked what she needed.
Today after Tenzin's clinic visit, I was able to drop a bag of goodies off to her. I didn't offer her the option of coming I just did it. I left a bag of items in the lobby so that she can grab it whenever she had a moment. I was fortunate enough to have someone insist on going to Target the first days in the PICU. I just wanted a razor. It was June and all I had was shorts so that was a must. When she returned, she not only had razors but a giant bag of items. I can't even tell you how much that meant to me at the time. I really wanted to do the same for another mom going through this. I am secretly hoping she is my new bestie but don't tell her that lol. But in all seriousness; we cancer families need to stick together. There is a language we all speak. We don't need to say much to understand what another cancer family is going through. I am forever grateful for the connections I have made during this time and really hope to make someone else feel cared about like I did.
I feel like I need to highlight the last few weeks otherwise this will be a ridiculously long post.
- we made it to Fire Island for 5 days. Tenzin enjoys the waves but tolerates about 30 minutes and then he is done. Paxton still is not a beach fan. Games, food and family time is how we spent most of our time and it was glorious.
- we participated in our Dojo's annual event. The boys and I really enjoyed bonding over martial arts again. I am so happy we have that as a healthy outlet.
- we have started to prep for school by buying supplies, backpacks, clothes etc. I love the beginning of school year buzz.
- we continued with weekly clinic visits for blood work, chemo and antibiotics. Tenzin has been able to continue on the chemo at home. His counts did take a recent dip. He just squeaked by today making it so that he can continue. I am nervous about next week's counts. If they don't recover, I am fearful he will be neutropenic just in time for school. This last week he has been more tired, lightheaded and less himself.
- He also finished a pulse of steroids on Sunday. Anyone who has been on steroids or has experienced their child on them knows that this is often a challenging time. I am extremely proud of him. At 9 years old he was able to express to me BEFORE exploding when he was feeling irritable or just overall not himself. I take that as a win.
9/20/23
It feels unreal that it has been almost a month since I have updated the page. Life is insane as most family's lives are with young children. This new school year has been especially busy. Paxton started Middle school. He is in 6th grade; our district has 6-8 together. Its a big change for him going from the comfort of a small elementary school with 1 main teacher to changing classes all day with 7+ teachers. He really struggled the week leading up to school. He had a lot of worries about getting lost, being late etc (normal middle schooler stress). But the stress was exacerbated by the fact that Tenzin was admitted the Tuesday of the week before school started. Tenzin ended up being extremely neutropenic the night before his usual clinic visit. By the time I put him to bed he was shaking, and his temperature was 99.7. Within 20 minutes he went up to 101.7. In that moment my brain starts to go into emergency mode. I don't know how to explain it other than just acting without much thought.
He ended up being admitted due to a neutropenic fever and severely low ANC. At this stage of treatment, although always a possibility it was not something I anticipated. We are in month 15 of treatment so we were definitely taken a back that a fever and admission hit us again. Every admission is really difficult but this one being so many months since the last one was just a different challenge. Paxton was very anxious about how long we would be there and school starting. Tenzin was upset being in his words "nothing ever goes right for us".
One positive about this recent admission is that Paxton was able to visit and be in the room from 11am - 8pm daily. That really allowed him to feel more a part of things. He wanted to be up there all day every day. It helped for him to see Tenzin, understand some of what was going on and he was even able to be a distraction for Tenzin. This admission Tenzin was a lot more active than usual so being attached to tubes all day was quite the challenge. It is interesting to see the growth in his personality and frustration tolerance. Even the hospital staff noted it.
Thankfully after receiving blood, fluids and taking time to rest; 6 days later we were released. Just in time for Paxton's first day of school. Tenzin did miss his "official" first day at school since his counts were not high enough to attend. He was able to start the following week. Currently he is attending about an hour to an hour and 15 minutes a day with 8 hours of home instruction. We shall see how things progress.
10/6/23
I really hope one day I won't be coming on here needing to vent. I am feeling overly burnt out the last few days. Not sure if I should be surprised by this anymore but I still am. I feel like I should have my shit together mentally better than I do but who the hell would. I am working with a number of systems, and each is broken in their own ways. Therefore, they are not working well together at all. The first would be the school district which although they are trying; they are falling short. The second is the medical system, which I think we all know is seriously broken. Third; the mental health system and fourth, the cancer world.
So, we are just about a month into the school year. I started with high hopes and although there is progress and some moments of pure amazement; most days I find myself just frustrated. I am frustrated that it feels like no one truly understands Tenzin or our family. I guess in some ways how could they? But I am super open, vocal and unapologetically honest so I often feel if people would listen with the intent of understanding this shouldn't be so hard. Tenzin also will say exactly what he means, needs or understands so I think if people would just take him at face value, they'd truly get it. And this is not to say that there aren't some people out there who make things easier because there are. There are angels on earth that we have the pleasure of having in our lives. Most know who they are because I really try to go out of my way to express how much their efforts mean to us. I also don't want to be misunderstood; I recognize and appreciate any and all efforts. I just think sometimes people do what THEY think is best instead of asking or listening.
I am still finding myself surprised by my overall mental and emotional fatigue. I find it frustrating but have to remind myself I can only do as much as I can handle and if I don't take care of myself the entire ship will sink.
Anyway, back to school. Tenzin went his first day with a smile on his face, some fears but overall, he separated well from me. His aide was warm right away and just what he needed to feel comfortable. I got just far enough away that I actually had a brief moment of "what do I do with myself" before the school called. And I am ok with that. I am dedicating myself to my boys' needs at this time and that means I have to be available whenever needed. I think my biggest worry is whether or not Tenzin's needs are being addressed appropriately. And it is kind of hard to even know what that means when things change often. Between chemo meds, blood work changes and just being a kid; this is a challenge to say the least.
10/12/23
So, I have started to find myself unable to finish entries in one shot. I am not sure if it is just pure distraction or my inability to fully process how I am feeling. Either way I have to just ride it out and let my mind do what it needs to. Today is day 4 of 5 of Nelarabine in clinic. This is always a challenging week for us. Being in clinic every day is not fun and as the week goes on Tenzin's overall patience for the process wears. He also needed his monthly Pentamidine infusion so yesterday was over a 3-hour visit. But we are closer to the end than the beginning so I will take it. Due to remaining accessed all week and just the overall exhaustion from the appointments; Tenzin has missed the last two days of school.
10/22/23
As expected, I did not complete that post (face palm). I do have a good reason this time at least. Unfortunately, Tenzin began to present with concerning neurological side effects by Wednesday evening from the Nelarabine. He woke up Thursday extremely exhausted which was unexpected since this chemo medication does not affect counts. Wednesday afternoon into Thursday morning he became increasingly frustrated. He was having trouble with word retrieval. Tenzin would begin a sentence and then would lose track of what he was saying or would become frustrated because he couldn't find the word for what he was trying to say. This is not a norm for him and something I was concerned with as the nurse did warn me to look for him "not being himself". Due to these concerns the oncologist did not want to continue with the chemotherapy. To be honest this was a relief as the concerns I was seeing were really scary. It is such a balance of needing to follow the protocol and making sure Tenzin is still Tenzin at the end of this. Although internally this is a huge worry; I am choosing to let that go and focus on the now.
Our ducks were also attacked earlier this month which took so much of my emotional and physical energy. I woke up one morning to feed them and refill their pools to find them all bloody. It was horrific and something I really wish I never had to experience. I am extremely thankful for a visiting vet who came the same day and checked them out. He prescribed pain medication and antibiotics to make sure they do not become infected while healing. They are on the mend and safe. One positive that did come from the situation is that Tenzin has really taken a liking to helping more with the ducks. He feeds them every day, helps me lock them up at night and even looks like a farmer in a onesie lol.
10/30/23
I can't believe another month has pretty much flown by. It's crazy how when you're busy time passes by so easily. We have two newly diagnosed children in our district. Myself and some other families have been on a mission to raise some funds and bring awareness to the community. We were fortunate enough to dedicate the last junior high football game this season to pediatric cancer. We raised some money selling candy, snacks, drinks and running a 50/50. Kids made beautiful signs to show support for the middle schooler diagnosed. Tenzin was feeling well enough to attend and was chosen to pull the winning 50/50 ticket. He thoroughly enjoyed laying outside; not so much the football game lol.
11/4/23
Well Halloween was a success. Both boys really enjoyed themselves. Such a difference from last year. Tenzin actually had the endurance and interest in being a kid and trick or treating. He insisted on bringing Barry our Tortoise and dressing him up. So, we did; with handwarmers in tow to keep him warm lol.
At clinic bloodwork revealed that Tenzin's counts were stable. Due to this his oncologist increased his home chemotherapy pill to 100% dosage. It is such a strange conflicting feeling to be happy your child's counts are good but also worried that the full chemo dosage is now going to change that.
After the neurological reaction to Nelarabine I am seeing pretty consistent changes in Tenzin. They are sometimes difficult to notice if one doesn't spend consistent time with him, but they are there. He is showing some sensitivities to sensory input mostly with touch such as having aversions to certain textures. He also expresses that he "zones out" at times. I notice difficulty focusing and confusion maintaining topics when writing or at times speaking. My hope is that with time these will resolve but they do need to be addressed either way. Onto a new challenge I guess is the positive outlook I should take.
11/22/23
It feels like months have passed but it's only been a few weeks. Thanksgiving is tomorrow, which is surreal to me. But I am looking forward to it. I am cooking this year which makes me feel a bit more "normal". We hosted a Friendsgiving at our house over the weekend. It was so nice to have the kids together and interact with other moms. I forgot how much I need that kind of interaction. I am often alone a lot of the time.
We adopted a hedgehog last week which might seem like it came out of nowhere, but it really didn't. Tenzin has wanted one for quite some time. I happened to come across a post of a local mom looking to rehome hers so....poof....we have a hedgie. Oh and he is albino. He is a welcome distraction and quite fun. If you didn't know; Hedgehogs are nocturnal, so he doesn't typically grace is with his presence until about 6-8 pm.
I was invited to participate in a podcast last week to share Tenzin's story and my desire to find an avenue for advocacy work.
Here is the link if you are interested in listening.
https://www.buzzsprout.com/1218635/13998492
The podcast like this blog has been very therapeutic for me.
I had a bit of a weird moment in the car this morning. I can only describe it as an emotional reaction I had no control over. I was actually feeling happy and enjoying a song in the car. I noticed the happiness and instantly tears were streaming down my face. I realized that happiness hasn't been an emotion I have felt over the last 17 months. I decided to let it pass and move on, but man was it overwhelming.
12/1/23
Well Happy December!!! Time for the craziest month of the year. I have already started wrapping presents which brings me so much joy. I have been so blessed with kindness and assistance during the holidays. I am really trying to thoroughly enjoy the moment and not allow outside stressors get to me. So much easier said than done. It feels like there's always some kind of reminder that life if just not "normal". At Tenzin's last appointment the oncologist mentioned that his ANC is actually higher than they'd like it to be. That took me by complete surprise as I never realized that it could be too high. We have always been concerned with low ANC and neutropenia that I never considered the alternative. She explained that there is a "sweet spot" number for the ANC that they like to see based on the chemo dosage and its effect on suppressing his bone marrow. Let me also mention that this news came the day before Thanksgiving and was brought up while Tenzin was in the room. Soooooo I was pretty caught off guard but also wanted to remain calm and positive as to not alarm Tenzin.
As I digested the news, I felt even more confused and to be honest I began to spiral. I started to question things no cancer mom wants to. So, I waited until we got home and settled to call the clinic. I left a message for the oncologist to call to discuss this further. I was later called by the NP for an unrelated matter and asked that she pass the message along to the oncologist. She did mention that it was a day before a holiday that I may not hear back until Friday, which I completed understood. Friday came and went without a call. Now in my house the day after Thanksgiving is when we decorate for Christmas. I decided I wanted to enjoy the day with the boys, so I did not call clinic again. It is now Friday of the following week and I still have not received the call back. I did leave another message today.
I am finding myself increasingly lacking in the patience area with adults lol. I just don't grasp incompetence. Now don't get me wrong; I do understand mistakes and I have even found myself understanding of overall human error. In the medical field as much as we don't want to see or admit it; human error is a piece of it. BUT what I do not understand is the continuation of mistakes especially after they have been brought to the attention of the necessary parties. I often feel like the medical professionals forgets that they are dealing with people and not just numbers. And as a professional in a case management field of my own; I also fully understand how overworked everyone is. When it comes to my children though; there is no acceptable excuse for incompetency.
I find myself really wanting to do something about this. We need to do better to support patients and families who find themselves in these impossible situations. I am so tired of hearing about budgets, caseloads and shortages. I truly don't care about the reasons why incompetency continues; I want to see change. I need some kind of guidance and opportunity to make something happen. I am on a mission. No one fights harder than a mom.
12/7/23
This week was long! It was the start of a new cycle so he had bloodwork, antibiotics and chemo yesterday. Today Tenzin had a lumbar puncture as part of his treatment protocol. He has some discomfort at the site which is just an overall shitty reminder of what he has to through.
I will say though we thoroughly enjoy the individuals that we get to see on LP and procedure days. It probably sounds bizarre to say that but these are some of our favorite people. These people have walked this walk with us since day 1 in the PICU. It's sometimes like a reunion of sorts where we catch up, giggle a little and go through the Lumbar Puncture Procedure. Tenzin gets put to sleep for this....and thank God he does. My favorite part of these days is the few minutes in the procedure room as everyone gets ready. We review the chemo and work on getting him to sleep. All while Tenzin makes jokes with the nurses and doctors.
When I say this is one of the most conflicting feelings ever....I mean it. I hate what he has to go through, but I love how these people have become the family that we never wanted.
Pre-procedure Minecraft banter with our Nurse
Post Procedure donut
1/4/24
Wow that was weird to write. I think that may be the first time I acknowledged 2024 in writing.
Since my previous post things how progressively just gotten more complicated. On 12/20/23 during Tenzin's routine bloodwork appointment it was determined that his ANC was 70. He also started to show signs of infection at his G-tube again. Based on those two factors; the oncologist admitted him. The whirlwind of thoughts that went through my head were more than I could handle. I broke down in the office. I KNEW this would happen again. If we follow the trends of Tenzin's bloodwork and chemo dosage this is just how his body responds. I was upset that something proactive wasn't done but also understand that we just don't know; sometimes things change. I immediately thought about Christmas as I think most parents would. I literally had just been saying how sad I felt for the families who would be admitted for the holidays and now worried that we would be one of them. How do I digest that? How do my kids? Then all I could think about was the laundry list of things I needed to take care of at home today. And after having my mini breakdown I got my shit together and moved forward. I assured Tenzin I would do everything in my power to get us home in time. I also had to call Paxton at school to break the news. And to be honest all I could think is how UNFAIR this all is. But as well all do.... I pushed forward.
So now my focus was on doing anything and everything I could to get Tenzin better enough to go home. Thankfully he never spiked a fever, and the infection was identified pretty early. Blood cultures were drawn to make sure there wasn't something going on that we didn't know about. Within 24 hours on the IV antibiotics his ANC had climbed a little on his own. The oncologist suggested a shot to help his counts recover while also monitoring them. She really wanted to get us home if we didn't need to be there. So, Tenzin got the shot midday on his 2nd day. By the 3rd morning his ANC jumped above neutropenic numbers but knowing how this all works; it was expected that it would decline again in 24 hours. So, the plan was to see how all of his counts recovered over the next 24 hours. During this time Tenzin took about 45 walks around the floor. Other than his counts being low; no one could tell that he wasn't well. These were all good signs. The morning of 12/23/23 we got the news that Tenzin was cleared to go home. We could not have left any faster than we did that day. We were packed the night before in anticipation of leaving.
2/8/24
I have been trying to muster up the energy and brain power to sit down and write for over a week. Nights before clinic I barely sleep due to anxiety. The day of clinic is just an emotional roller coaster. The day after clinic feels like I am recuperating from it all. Repeat and it's a vicious exhausting cycle. I wish this was something more openly talked about. The emotional fatigue of it all can be debilitating. Then add on normal life responsibilities or potential issues that can arise. It all just can feel like too much.
We as a family have been at this for 19 months. The concept that it gets easier over time is not really relevant to this situation. It doesn't really get easier with time. Yes, you get used to certain things, but the emotional strain builds up. Week after week and month after month you build experiences and memories that will never leave you. And although there are some positive highlights, you can't ignore the trauma of it all. I am sometimes triggered very easily and brought right back to the raw emotions of the first few months of this diagnosis. THAT is what I truly hate the most. This diagnosis has left us all with wounds that will never fully heal. We can learn how to cope and thrive but, in the end, we still have the wound.
Tenzin has come such a long way throughout treatment. He is able to have his port accessed with minimal stress. The last two weeks though his port has not worked properly. Last week he was receiving chemo and IV antibiotics through his port. It was determined that his needle may be too short now and he'd have to increase in length. His infusions took a very long time due to this and required him to stay still. This week we were told that they did not have a longer port needle in the gauge size that he requires. So, we needed to have him accessed with the shorter needle. This did work but took some adjusting while placing the needle which was very stressful and painful. The clinic now ordered him the correct gauge and length so that next week he should hopefully have a smoother experience.
Since Tenzin's admission before Christmas, we have been in clinic weekly so that the oncologists can watch him numbers closely. It seems as though each time he is increased in chemo dosage too quickly his counts drop too low. He is currently on a 75% DOSAGE. His oncologist wants to look at some of his count trends and doses before increasing any further.
Tenzin finished another Steroid pulse on Sunday. This time the steroids causes extreme fatigue. He was sleeping upwards of 12 hours a night and still woke up tired. Due to this fatigue, we really didn't go anywhere other than clinic. The house has started to make us both stir crazy. Tenzin is still home full time with home instruction. With germs and his counts being inconsistent it is just best that he does not attend school right now.
3/26/24
I am sitting here instead of pacing around the house. I really dislike the day before clinic. It puts me into a bit of a tizzy making sure I have everything. The constant replenishing of meds and snacks has started to make me feel bonkers. We were able to skip a week of clinic. Tenzin's counts were stable enough that we didn't need to go in just for bloodwork. It has been a really nice break from the rigid routine. However, I feel as though I have been hit in the gut now knowing that we have to go in and will be there for a couple of hours. We haven't increased any dosage of his chemo as his counts although stable are on the lower end. Tomorrow, he gets his monthly dose of antibiotics, bloodwork and IV chemo. I am really hoping that are no hiccups. The last week or so has been relatively positive. Tenzin's mood has improved the longer we are away from clinic. It appears that his anxiety increases as we approach clinic day, and it takes him a few days to recover from being accessed. He also started steroids again tomorrow for a 5-day pulse. Steroids feel like the devil!!! He complains while on them and also the few days of coming off of them. Muscle spasms, moodiness, irritability and massive hunger are just a few of the side effects he experiences.
Aside from medication issues, Tenzin recently has started to express body image issues. Treatment has been hard on his body between initially losing way too much weight; to gaining it back, to now feeling uncomfortable in his skin. He doesn't like the way he looks most days and is constantly calling himself "fat". We have a hard rule in my house about how we speak about our bodies, and I really discourage this kind of negative talk BUT I cannot ignore how he feels. One of his nurses informed me recently that it is common for kids with ALL to gain significant weight due to all of the steroid pulses. Being weighed weekly at clinic has also causes him to obsess over his weight. The psychological effects of the last two years are heart breaking.
4/10/24
It is 7:41 am the day of clinic. I slept a total of 6 hours and 20 minutes which quite honestly is better than I thought. I have been monitoring my sleep for about a month now. I always feel exhausted. Based on my watch reports LOL; I don't get much deep sleep
which is likely why I am always tired. I'm guessing stress has a lot to do with it. Either way I am trying to work on it. Sleep is very much related to my mood as it is to most. As a mom I find good sleep important otherwise I feel really touched out.
Yesterday was a very difficult day. Emotions are running high. Tenzin was very frustrated and uncomfortable. When he is feeling that way; I often end up the one he lashes out at. Not a fun role but it is part of my mommy job at the moment.
I found out this week that one of the medications Tenzin has been on for about a year could be a main source to some of his discomfort. Over the last year Tenzin's weight has almost doubled. Now some of that is due to necessary weight gain. He was severely malnourished and thin. Some of it is also due to the necessary steroid pulses throughout his treatment. But after a thorough conversation with his psychiatrist over concerns with his body image and weight gain; he explained to me that one of his mood stablizing medications' main side effects is weight gain of 20 - 30 lbs. And with Tenzin's track record of how medications and treatment effect; he often ends up feeling any and all side effects.
I am feeling hopeful that with some medication tweaking we might head into a happier and more comfortable place for Tenzin. It is heart breaking to watch him struggle with his self-image and talk negatively about his appearance. I know I may be partial, but I think he is perfect!!!
5/15/24
Emotions running high seems to the running them of life lately. I guess that is to be expected.
I am starting to really dislike the stage that we are entering and if I am being honest this is the stage I have feared more than anything. We are closer to the "End of treatment" than we have ever been and its terrifying. I am not sure if that even makes sense, but I would venture to say that most "cancer" mamas would understand.
I had a lovely Mother's Day with family. I really do appreciate my family and of course my boys. But man did the emotional trauma and PTSD come out as the day unfolded. We all had a good cry after a deep discussion. The times that this happens are so unplanned. These aren't emotions and situations that you can necessarily plan for. Sometimes a simple bicker amongst the boys will bring up feelings and behaviors that clearly have a deeper meaning. My heart hurts knowing that they both have "wounds" from this horrible journey we have been on for 2 years. Therapy only does so much. We need time, patience and to use the tools in those moments. One thing I will say is that both of my boys have learned how to communicate their feelings in a way that most adults can't. For that, I am thankful but also wish they didn't need to learn.
6/11/24
Things have been a bit more "calm" since the last entry. Tenzin's counts did take a hit again, so he was on a chemo hold for 2 weeks. It seems as though the 100% chemo dosage is just too much for him. Every time we go back to 100% dosage, he ends up neutropenic and needing to be placed on a hold. So, he is back on 50% dosage and seems to be doing ok. Next week if counts are stable, he will go up to 75% dosage and then the doctor plans to complete metabolic testing. His oncologist wants to see if the 75% dosage is considered a "therapeutic" dosage for him; and if so, he will remain on that for the duration of treatment rather than going to 100%.
Overall, we are all in a better place emotionally than we were.
7/3/24
Whew time really does just fly. Summer is officially here. It's a bit weird when we hit this time of year. 6/2 is Tenzin's diagnosis anniversary; so the summer is marked by traumatic and milestone victories of Tenzin's treatment. I had a moment this morning that I realized Paxton is in his 3rd year of camp at camp Sunrise. I was so nervous sending him off to camp his first year. I was spending days in the hospital at clinic with Tenzin feeling guilty that Paxton wasn't getting enough. Fast forward to now he is on year 3 of a camp he looks forward to every year. He has made friends and bonds he never would have had Tenzin's diagnosis not happened. It's strange the appreciation I feel for how this has become the silver lining. The recent reflection I have been doing has been more of an appreciation for where we have been, what we have been through and where we are headed off to. Now don't get me wrong.....I have days that I am scared shitless of Tenzin's end of treatment. But it has to happen right? He can't be on chemo forever and the safety of the constant doctors appointments will have to eventually slow down. I have a love hate relationship with the whole thing. All I keep reminding myself is that whatever will be will be whether or not I try to control it or drive myself nuts with constant thoughts. So I choose to let the thoughts come and then release them. That is something I wasn't sure I would be capable of up until now.
oh also if you so choose check out the shirt Tenzin was able to design
https://spreadgoodsquad.com/products/team-tenzin
7/28/24
Beads of Courage offers programs to support and empower children with serious illnesses and their families. Beads of Courage has been a part of Tenzin's journey pretty early on. When Child Life initially presented the paperwork for it, I tucked it away in the ridiculously large pile of paperwork we were provided in the hospital. It wasn't until discharge from Tenzin's initial hospitalization when I was finally home and trying to digest everything that I actually started reading about it. Our hospital participates in their Flagship program. We have a Bead guide to complete in order to keep track of what beads Tenzin has earned. Periodically we turn it in and are given the beads representing the different forms of courage and achievement. I have been keeping the loose beads in a beautiful handmade bag we were gifted. Just yesterday I decided it was time to start stringing the beads. I even have a shadow box to eventually present them in once Tenzin is completed with his treatment. It was somewhat therapeutic to start this process yesterday. The beads are really so beautiful. We have some really cool commemorative ones including sibling beads and my personal favorite the pet "carry-a bead" bead. I will one day post a picture of Tenzin's beads but right now here is the website if you're interested in learning more about it.
8/7/24
We head to clinic today for bloodwork. Tenzin's counts took a hit over the last two weeks. He is on antibiotics to avoid infection at his gtube site. Yesterday the oncology office called to inform us that Tenzin's IgG levels were reading low from last weeks bloodwork. From my understanding they would like to do an infusion of intravenous immunoglobulin to help prevent infections. It is all slightly confusing to me at this point. Over 2 years into treatment and this is the first time it has come up. I have questions obviously.....but we are leaving to go on a family vacation later today after his bloodwork appointment....so I need to try and let that go. I will say we cancer mamas need to trust our guts. I had a feeling something was off. Although Tenzin does have energy; when he sleeps he is sleeping upwards of 12 hours. I thought maybe his body was just tired from the 2 years + of chemo. The low IgG levels may be contributing to that if his body is struggling to fight off any bacteria and potential infections.
8/22/24
Just some observations and thoughts I want to get down in words:
- I listened to Tenzin explain to his friends how the steroids affect him. He is on another 5-day pulse and its beginning to hit him. Over the last two years of pulses, we have worked hard to develop a vocabulary and a way to communicate how he is feeling. The steroids are very frustrating for him because they cause such intense mood swings, frustration and extreme hunger. It makes me so proud to hear him able to communicate about such difficult things, but it also makes me sad that he even has to.
- Paxton's anxiety is spiking which is expected but also difficult. With the start of school approaching the idea of change always brings some anxiety. Since Tenzin's diagnosis this time of year has been worse. Every year since Tenzin has been in treatment we have unfortunately ended up hospitalized just before school starts. So now this time of year is a trigger due to that stress and trauma. I am not going to lie; I have the same worries in the back of my mind but as an adult I am able to manage those thoughts. I have been working with Paxton on coping skills and I am proud to say he is using them. Although the anxiety is there; he is coping much better than the last two years.
- As October approaches (the end of Tenzin's treatment) we are all experiencing a variety of emotions. The discussions of the end bring up fears that although expected hit hard. Yesterday in clinic Tenzin expressed that although he is happy to be able to come off of chemo; he is scared that his cancer will come back. He went as far as to mention that "with our luck"; it will come back. How can that not break your heart? And if I am honest, I feel the same. All I can do is reassure him that if the doctors had any concern of a relapse, they would be proactive about it. How unfair is this for a 10-year-old?
9/20/24
Well the new school year has started, and it's been quite a doosey. All the preparation in the world does not stop one from experiencing anxiety. And that is one of the worst life experiences children learn. No amount of worry, preplanning, coping skills or therapy stops the anxiety when it is triggered or spikes.
We are really digging deep into our ability to change our self talk. I wish so much that children didn't have to experience things like this. But I will say in the long run I do think we will all be better from the growth through the struggles.
10/7/24
As I sat down to type today; I realized that I am approaching 2 years of writing on here. It doesn't feel like it's been that long. We are approaching Tenzin's official end date for chemo. When we first started this terrible journey, I remember reading about parents who had conflicting feelings about ending treatment. Back then I couldn't imagine doing anything other than celebrating but as the date nears its the last thing any of us want to do. Mostly we just want to move on. Life doesn't stop while you're going through all of this. It kind of feels like it's just one less stressor on our plates. Day to day there are so many things going on you kind of forget the cancer thing until its back in your face. Like when Tenzin's mickey button fell out last month. Or when I crush his chemo meds every night. Or when it is blaringly obvious that he lost quite a bit of his childhood to this thing we call cancer. As we transition to a different stage of life the reminders are different, but they are still there.
Something that I had really hoped I'd be able to accomplish by now would have been to become more of an advocate or support for other families. In a lot of ways, I am shocked at how hard it is to help. I don't understand the red tape and roadblocks that come along with trying to do good.
10/10/24
I am just adding this one to keep track of the feelings I am trying to process through. Tenzin had his last chemo iv infusion yesterday. As his oncologist began to describe how the next few months will go, then next year and then next 5 years my brain began to swirl. Although I have been fully aware of most of this plan for quite some time; the realness of it was a lot. I have no other words to describe it. Cancer never leaves. Your body might have fought it off; and if all goes well it stays the F away; but the wreckage is leaves behind is unimaginable until you're in it.
The oncologist could sense my nervousness and told me "We can't keep him on chemo for the next 5 years". It's as if she read my racing mind without me even processing exactly what my worry was in that moment. She is right; we can't do that. He needs to live a "normal' life. But I guess I am just fully digesting that what most of us consider normal is not what our life is.
10/28/24
Well; Tenzin officially took his last chemo therapy pill on 10/20/24. I'll be honest....it was quite anticlimactic. I'm not sure if he doesn't fully understand the depth of all of this or if he is just so done with it all. He really wanted no recognition or celebration. As a mom, that's difficult for me.
12/4/24
Well I allowed quite a bit of time to pass.