If you talk to our doctors, they will say that today is technically Clark’s day of rest. This is because we are no longer bombarding Clark’s body with chemo!
But from my perspective, it doesn’t feel any different.
Clark is still receiving Cyclosporin and Cellcept since neither is considered chemotherapy. He is still on meds to protect his kidneys as well as the high doses of IV fluid to continuously flush his bladder. And, as well, he is still taking is usual preventative meds (antibiotics, anti-fungal, etc…). Clark also relieved a platelet transfusion today to boost his platelet numbers. So even though it is his “day of rest”, there is still lots going on!
Then again, it is Clark’s day of rest, not mine…
Clarkie received a brand new dump truck from the child life specialist. It makes rumbling sounds when you press a button up front. He LOVES it!
Kim, our Child Life specialist, stopped by this morning with some fun new toys for Clarkie! There was a wooden puzzle, a dump truck that makes noises and some toy cars. While Kim and Clark were playing, Marianne also stopped by. She is Clark’s physical therapist. All 3 of them played together while Mama stepped out for a nice hot coffee. :)
Overall, the day has been quiet. Patrick arrived this evening. He will be spending the night to make sure he is here for the bone marrow transfusion and Clark’s second birthday.
I’d like to reiterate how grateful I am to Clark’s bone marrow donor. Their donation was a very selfless act, and we are very grateful. Thank you so much, whoever you are!!
Clark “spiked a fever” last night. He awoke at about 11pm with his legs and arms tucked beneath himself, and shivering slightly. Patrick recognized it immediately, but in taking his temperature, it was not high enough to call it a “fever”. An hour later, the nurse took Clark’s temperature again, and sure enough, we could then call it a fever. Clark got some Tylenol to make him more comfortable, (so he could sleep) and some additional antibiotics. They also drew blood cultures from each broviac line to rule out a bacterial infection in the line.
This is Clark’s last day of Chemo, and it is worth celebrating a little. There is a long way to go, but this milestone is still an important one to note. Clark has been on a great trajectory, and the doctors have been very happy with his progress. Clarks Lymphocytes are at zero, and other functions (liver, kidneys, etc…) are stable.
The final dose of Cytoxan will take 48 hours to clear the body after it is administered. Fluids will be kept high during this time to ensure all of it is flushed through his bladder.
It is interesting to note that the effects of the Cytoxan have already taken place, but will not necessarily be visible outside of the body yet. For instance, hair follicles have died but Clark’s hair may not be falling out. Think of it like cutting the roots to a tree, but the tree will take some time to actually die. These effects, if they are going to happen, will occur over a 2 week period from this point forward.
Part of the reason Clark has had very little symptoms is because he is getting about 5% of a full dose of Cytoxan. This is very small, and therefore the side effects from this (short and long term) are expected to be minimal. DKC patients are sensitive to these drugs, and so that’s why they dial them back.
So, you might ask, why not dial them back for all patients? Well… that runs the risk of getting Graft-vs-Host disease. This is definitely the biggest fear (of the many fears) that doctors have. We need to balance not getting GvHD and giving too much Cytoxan. Carefully walking this line will give us a successful transplant. This line is where the art and science of BMT meet.
We woke up to a bit of confusion this morning. Our nurse showed up at 6am dressed to give Clark some chemotherapy. We weren’t expecting his Cytoxan until 8am, so we asked what was going on. She told us that Clark was scheduled to get another chemo called Cellcept. Since this was the first time Patrick and I had heard of this, we were concerned. We thought there were only 3 chemos, and that he was on the last one. Where had this 4th one come from!? After having the nurses triple check, sure enough this was prescribed and expected by the doctors. So we conceded and went with it.
After doing some checking, I came across a fairly recent clinical trial for DKC patients receiving BMTs, where researchers are trying a new cocktail of chemo to reduce the post-transplant complications. Sure enough, all 3 of Clark’s chemos (Fludarabine, Campath, Cytoxan) were there, as well as a fourth… Cellcept! It turns out that Cellcept isn’t a “chemo” exactly, it is more of a protection against GvHD, which is one of the big issues with DKC patients who receive bone marrow transplants.
So… if there was any question as to how bleeding edge the treatment that Clark is receiving is, the answer is right there. The clinical trial was started in 2012 and is scheduled to be completed in 2032. The study is being lead by the Childrens Hospital Boston. Patrick and I are curious if we are possibly contributing to this study with Clark’s progress? There was way too much paperwork at the start of the BMT, so it is very possible we agreed to feed our information to this study. Our hope is that we are, so other DKC children can benefit from our experience.
Which brings me to one of the topics I wanted to talk about today. I would like to give a huge “thank you” to Clark’s UCSF nurses. From what I understand, each nurse works a 12 hour shift (2-3 shifts per week). During their shift, they are responsible for only 2 patients. This way each BMT patient has the constant care needed, while making sure the nurse is fully aware of their patients individual needs. Not only do these wonderful nurses check vitals, administer medicines (while understanding the computers and machines used to administer), change bandages, clean up vomit, and change linens but they also open up and go through every single diaper to make sure there is no cause for concern. And with all this, they try to be as caring and understanding of the patient and parent’s needs and concerns. These are only a few things I have noticed from the nurses, I am sure they do a lot more behind the scenes as well. Regardless – I really appreciate all that they are doing for Clark!! THANK YOU!
From a chemo perspective, today is a quiet day. Clark is only getting one chemical, Cytoxan, and that is from 8am to 10am. Other than this, it’s just play, eat and sleep. Effects from Cytoxan we won’t see until after day zero.
All week I have been lucky to spend so much time with Clark. When he is in a good mood (most of the time!) or when his adorable cherub face is sleeping, I get so much joy. I have also been fortunate to have such a loving husband who is somehow managing to work, spend time with Connor AND come visit me and Clark in the evenings (how does he do it?!).
But I have a confession to make…
With all the love I am surrounded by, I’m not as happy as I’d like to be. I miss my little man, Connor. We have been visiting on the phone most evenings, and Rosemary has been kind enough to send me photos of my wild angel.
But today, I got a day pass and I spent some overdue Mama time with him. Patrick watched Clark and I took off and drank the freedom for a couple hours!
Clark’s day was quiet. He took a long nap in the middle of the day, and otherwise was probably really glad to spend the time with his Daddy. The two played with trains, fire engines, whistled at the nurses and smoked cigars. At least that’s what Patrick tells me, but I’m a little skeptical. I’m pretty sure Clark can’t whistle yet…
My milkshake tastes better than yours…
Connor’s day, on the other hand, was not quiet! We got a chance to get out on a patio and drink milkshakes and enjoy the sunshine! We played “fishing” off the top bunk of Connor’s bed and Batman Lego and a million other games. It was so much fun!
It was really nice to see him and be home again. I wish I had time to shower, but getting laundry done was about all the time I could muster. You take what you can get in these circumstances – and clean underwear was definitely a priority!!
We finished the day giving Clark a bath and ordering pizza. If we are lucky Patrick and I will fit in a movie (played on his laptop). It’s nice to have a bit of “normal” in all this crazy.
Clark and I were talking this morning, it went something like this…
“Good morning Mother, I think I’m ready to go home today.”
To which I responded…
“Oh no, sorry Clark… this treatment is 6 weeks long.”
To which he replied…
“What the #$!@!! 6 weeks?! I thought you said 6 days!!”
Clark has officially declared that he no longer wants to be in the hospital. He has a subtle way of telling me, by say… refusing to brush his teeth. And not-so-subtle ways like fighting me (more than usual) with his eye drops, and refusing to take his oral meds. I knew this day would come. I was just hoping it would be much later in our stay.
I’m hopeful that this is just a temporary issue. On a more positive note, even though Clark is stubborn with his refusals, I am even more stubborn and (even though I don’t like to) can overpower him when necessary. :) Sorry kiddo, we’re staying until you’re better.
We had a long night of diaper changes. I was hoping Clark would have slept through them (and subsequently allow Mama to sleep through them). But unfortunately that didn’t happen. For some reason, Clark doesn’t like his diaper changes (even by me). Maybe he’s cold? Or just doesn’t want to be disturbed? Either way, we were both up every 2 hours until 8am when his chemo started.
Clark was full of energy this morning… but a kind of tired and cranky energy. Not my favorite combination. He would get frustrated one moment while throwing his toys on the ground, but then jumping up and down giddy with excitement the next. He was a bit of a handful. Around 11am Clark finally had his nap (2 hours!). This gave Mama time to shower and enjoy a hot cup of coffee.
Tomorrow Clark will start an additional chemotherapy, called Cytoxan. It will also be his last day on Fludorabine and Campath. Triple chemo day…
Cytoxan is known to be very hard on the body. Especially on the bladder. To prevent bladder damage, starting tonight at 10pm, Clark will be given a high stream of IV fluids to keep him urinating. This will help Clark constantly empty the Cytoxin from his bladder instead of letting it sit there. Letting Cytoxin sit in bladder can cause bleeding and scaring of the bladder. Clark’s diaper will fill up with urine so quickly that it will need to be changed every 1-2 hours around the clock. And there are 4 days of Cytoxin treatment!! Thankfully the nurses will help change them, especially at nighttime.
This is the apparatus used to draw blood from Clark. It allows a nurse to connect once, push in saline, pull waste blood, pull blood for testing, and then push in saline to clear the line when done. Very cool!
Every morning the nurses do a blood draw. This is to check his blood levels (RBC, WBC, platelets etc..) as well as how well his liver is functioning, his alkaline, calcium, phosphorus and many many other levels. Over the last few months, we’ve been very focused on watching his platelets, ANC, Hgb and neutrophils levels…
…But today we were curious. Which of these numbers are we watching to see how well Clark is progressing? What are we waiting to happen and what numbers can we watch to know when we get there?
This is a close up of a Lymphocyte.
As it turns out, we are watching Clark’s Lymphocytes. This is a measure I had never watched (or heard of) before. Lymphocyte numbers need to be at or near 0 to transplant bone marrow. Lymphocytes are what fights the donor marrow and can cause HvGD. Clark’s Lymphocytes are near 0 now (0.01 as of this morning). So, apparently he is doing great. Neutrophils and ANC don’t determine whether Clark is ready for transplant, but they will still go down with the use of chemo.
So I had to ask… If he is at 0 now, why bother with Cytoxan?
There are a lot of unknowns about BMT’s and the chemos used. This is why all hospitals have slightly different methods for their BMT patients. For some reason, using Cytoxan even after lymphocytes are 0, helps prevent GvHD. One belief is that there might be extra lymphocytes in tissue, which can’t be measured (yet)….and the Cytoxan most likely kills them.
Another interesting thing came up today. Clark’s blood pressure has been slightly elevated. My first thought was, so what? Most American’s (and Canadians) have high blood pressure. We can put him on a diet and have him workout on the stairmaster, right!? (Just kidding… the treadmill is way safer for kids under 2 years old, duh!)
As it turns out, high blood pressure is a bigger deal with Clark than it is with “normal” people. Apparently since he now has very low platelets, having high blood pressure can greatly increase a persons chance of internal bleeding. The high blood pressure can cause bleeding in the veins themselves (since they can’t repair themselves). Yikes! It turns out that the steroid Clark is on (Decodron) can temporarily raise blood pressure. So yet another medicine is required to offset the problems of a medicine given to offset the problems of another medicine (and so on, and so on…) As such, Clark has started taking a very small dose of blood pressure medication to alleviate the problem. Since tomorrow is his last day of taking Decodron (since it is also the last day of taking Campath, the reason he is taking Decodron), I’m hoping we can unwind this twisted mess from the axle shortly.
Every morning I wake up a bit anxious (and very sleepy). I’m never sure how the day will go. What if something goes wrong? What if Clark has a bad reaction to one of his medications? What happens if he gets an infection with his white blood count so low? What if he is in pain or is inconsolable? Will I react quick enough and do the right things to help him?
It is stressful even on a “good” day. Each day has its own list of challenges, and it is a lot of work just trying to keep up with all of them. As the day goes on, and if Clark is happy – I am happy. If he is sleeping, I can clear my head and (if I’m really lucky) read for a while. By the way, A Dance with Dragons (book 5 of Game of Thrones) is pretty good so far!
Today has been another “good” day. Clark is full of energy and bouncing all over his crib. The physical therapist came by this morning to play some games with Clark. Clark’s favorite game was a Simon Says style of game with dance moves. :) And then this afternoon the Child Life specialist came to play! She laid a mat out on the floor for a larger play area. They had fun playing with cars and trains. Tomorrow she will bring some new toys for Clark to play with!
Clark had the same regimen today as he had yesterday. 30 minutes of Fludarabine, 6 hours of Campath, and another dose of cortisone steroids. Before, during and after, Clark is also given pre-meds and other preventative meds to help protect his liver and other organs that the chemo can damage. So far today, Clark has not had a fever, and has only had very minor hives.
In between visits from doctors, nurses and other hospital staff that are interested in Clark, we quite enjoy our room. There is a flat screen TV with a DVD player (perfect for when Clarkie is finished playing) and a wii (which I haven’t tried yet). There is a desk with a computer and wifi, as well as a stereo. My bed is a twin, and it is pretty comfy (or I’m just too tired by the end of the day to notice.) No one is allowed to shower in our bathroom because of bacterial/ fungal growth in the water vapors. So, whenever I get a chance to slip out of the room, I use a shared (single stall with a lock) family shower on the floor. Thankfully Patrick brought me some flip flops to wear on the tile floor! All in all, the facilities are pretty nice and I feel fortunate to be in such a great hospital.
Clark’s naps during the day directly affects how he sleeps at night. For example, yesterday he had 2 good naps and ended up having a full nights sleep… Today, on the other hand, wasn’t so great. Clark was woken up during his 1st nap because the nurses needed to do vitals (needed while on chemo). And then, as he was settling down for his 2nd nap, there was a shift change with the nurses….and everyone kept pouring into the room (for multiple reasons). This caused him to skip his second nap, leading to a very long and strenuous evening of trying to put him to bed for the evening. For his sake, and mine, I hope he gets a good night’s sleep tonight.
Monday night was a little rough. Every time Clark’s Benedryl and Tylenol wore off, he ended up with hives on his face and arms as well as a fever. I guess I shouldn’t be surprised since Clark was getting Chemo for a total of 8.5 hours yesterday, plus a 4 hour blood transfusion last night. Clark has been such a trooper. Even with his interrupted sleep, Clark woke up at 7:30am today (Tuesday) ready to play! I on the other hand, could use a long nap or a very strong cup of coffee.
Clark continues to have a big appetite. This is one thing the nurses are looking out for since loss of appetite is very common in chemo patients. I need to remember to give him lots of variety, and not only feed him “comfort foods” because he might end up associating those foods with his hospital visit. Thankfully the hospital menu has a nice variety and also contains organic, all natural, local and healthy options. If Clark does end up loosing his appetite, he will be given TPN and lipids in IV form (or as Patrick likes to call them, ‘Gatorade’). These contains all of his daily nutrients, fats, calories and electrolytes.
Today was a relatively quiet day. Clark only had very mild hives and low grade fever, all of which was controlled by his pre-meds. He also had 2 long naps with some playtime in between. This gave Mama time to read, and work on the blog. :) Clark’s platelets dropped to 6000 (they were 34,000 yesterday), so he also had a platelet transfusion.
As for now, Clark’s playtime consists mainly of driving his fire truck, cars and trains, reading books and playing peek-a-boo. The hospital has a “Child Life” specialist. From what I understand, this team will bring some toys and a play mat for Clark to play with for a couple of hours. We are going to try to take advantage of this whenever possible. I have also spoke with the pediatric physical therapist, and she would like to spend some time helping Clark progress (or at least, not regress) while in the hospital. Spending 6 weeks in a hospital crib can affect childhood development, so the goal of both of these specialists is to address this proactively.
Daddy has been coming to visit every night after work. This is a time that both Clark and I look forward to. Patrick comes in like a knight in shining armor, here to play with Clark and to give Mama a break. He also usually arrives with supplies, like clean laundry and dinner. :) Thank you Patrick! We love seeing you.
Today is the official start of Chemo therapy. Most of the noticeable side effects are expected next week, as it takes time for the chemicals to do their job and affect the body. All we hope for this week is no surprises or serious reactions immediately after being given first doses of the chemicals.
Clark woke up bright and early this morning. This gave him time for some breakfast and playtime with his trains before chemo. He started out with Fludarabine (flu-dare-A-been) at 9am. This is slowly dripped into his line over 30 minutes. Fludarabine generally doesn’t have any negative reactions while given, but can sometimes cause nausea and vomiting after being administered.
Next, Clark was given Benadryl and Tylenol before his 10am Campath test dose. The pre-medications are to help prevent a reaction to the Campath. Common side effects are hives and high fever, along with possible serious effects such as Anaphylaxis shock.
The Benedryl Clark was given just before his Campath had him asleep for the entire 2 hours. He woke up happy and well rested. I thought we were in the clear, but unfortunately the nausea and vomiting kicked in around 2pm. He also had a fever (101F) and has been sleepy ever since. These are very common reactions and they usually occur some time after the Campath has been administered. He is being watched closely, but so far there is no need for extreme measures. On a positive note, Clark did not have anaphylactic shock!
Every time a highly reactive medication is given, Clark is constantly monitored. The nurse checks in on him every 15 minutes twice, followed by checks every 30 minutes until the medication is complete. Clark is also hooked up to monitors for his respiration, pulse and blood oxygen level.
Tonight Clark will finish off his 6 hour dose of Campath, followed by a red blood cell transfusion. Then, tomorrow morning we will start all over again.
This morning Clark, Patrick and I arrived at UCSF to start the BMT process. We arrived shortly before noon. Today, the order of events are all about making sure Clark is prepared for the start of chemo tomorrow.
Before even entering our treatment room, Clark needed to have a chest X-ray to make sure his broviac was placed correctly. Next we were taught how to scrub our hands up to the elbow with a sponge brush. We need to do this once a day before entering the room, or any time we leave the hospital and return. After scrubbing we were allowed to enter the “anteroom“.
The anteroom is a small room the connects the hospital hallway to Clark’s treatment room. It serves as a staging area where we can wash up and store anything considered “unsanitary”. Everything that enters Clark’s room needs to be disinfected. This is also the space where Patrick and I eat our meals.
The first thing I noticed when first entering Clark’s treatment room, was the wall of windows looking over the city. The room has a very nice view. It is also a decent size. Enough room for a single bed, Clark’s crib, a computer desk, wardrobe closet and medical equipment. We also have our own private bathroom! But we can’t use the shower, unfortunately. Since the risk of infection is so great, no one is allowed to shower in the room. Since Clark is still in diapers thankfully, I am allowed to use the toilet and the sink in the room.
One of the big things we learned today was that every procedure, large or small, has very specific rules. Take his bath, for instance… Clark will receive a bath every single day, but not a normal bath, a chloral-hexadine bath (or as Patrick likes to call it, a chemical bath). This uses 4 sterile wipes that kills off any germs that may be living on Clark’s skin. We were also given special instructions on how to “brush” Clark’s teeth, change his diaper and how often to change his bed sheets.
The rest of the day was followed by A LOT of blood draws (CBC, cultures and factor levels) and medications. The blood draws and medications are all given through his broviac. Even though Clark only has 2 lines, they are able to hook up 2-3 IV lines to each broviac line (6 lines total). This way Clark can receive multiple medications or fluids on each line. He doesn’t start the chemo drugs until tomorrow, but today he started his anti-viral, antibacterial and anti-nausea medications (just to describe a few). All of these drugs are given to cushion the blow from the chemo drugs that are coming (fludarabine, campath, and cytoxan).
Overall, Clark actually had a fun day! I was a little worried about having him be in a hospital crib during our stay, but so far it has turned out great! The crib rails can go up quite high, or drop as low as we’d like. Plus, there is a clear plastic cover that we have the option to drop down for maximum protection. This way I am able to leave the room for a minute (even just to use the washroom) without worrying about Clark falling out of bed. Clark likes his new environment as well. He has been standing, jumping, dancing and playing in the crib all day. He is also loving the attention he is getting from his nurses. :)
Tomorrow is a big day for us, so time to head to bed.
