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).

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. 

3/19/23

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. 

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. 

7/31/23

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.

 

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.

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. 

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. 

7/28/24

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.

https://beadsofcourage.org

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. 

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.