January 31st, 2013- Bryce greets everyone in place of my Day 38 photo. Daddy decided to put one of my beanies on his head and snap a photo.
I’ve had a rough day and it is only now improving finally. I woke up with a terrible headache, which I think is due to the steroid eye drops that I am taking for chemotherapy side effects. I don’t have to take them for long, my last dose should be tomorrow night. The headache caused my LP (spinal tap) to be delayed because they wanted another CT scan of my brain to make sure I wasn’t bleeding again. The results came back and everything is okay, so they went ahead with the LP (spinal tap). The LP went well, but unfortunately I still had my headache the whole time. I was able to sleep for a good while, but resting did not fix my headache. I eventually got oxycodone to help with the pain and it finally helped things improve.
I also had a low grade fever, 99.9, for most of the morning, which had everyone concerned over a possible infection. My temperature now is back to normal, but they said it is possible that the steroid that I take by mouth is masking a fever, so they will be watching me closely. They also attempted to remove my PICC line today, but the nurse was unable to slide it out. Now I will be going downstairs tomorrow where they can safely watch as they remove the line. The nurse was also able to get an IV on my left hand on the first try, Thank God!, because I am such a hard stick. Hopefully the new IV behaves for a few days before I get a new PICC line on my left arm.
Bryce came to visit, but unfortunately the pain had not subsided before his arrival. I was still laying flat after my LP (spinal tap) when he first arrived and sleeping off some of the medication. David and Grammy attempted to keep him happy, but quiet until I was able to sit up. Sadly after I woke up I was still in a lot of pain, so his usual squeals, which I so love were hurting my head. We managed for awhile, but I eventually had to say goodbye as my pain got worse and I got exhausted. Daddy made sure he watched me sleep several times, so Bryce got his Mommy time even though I only got a short Bryce time.
January 30th, 2013- Today has been a whirlwind of tests and lots of unknowns. I woke up with the chest tightness again plus a soreness in my PICC line arm, but when the lasix failed to make me feel any better the questions started. I ended up getting a chest x-ray, EKG, echo of my heart, and an ultrasound of my PICC line. The good news is that my heart is working just fine but I have a few other issues going on. First off, the ultrasound of my PICC line showed the beginning of a clot. Thankfully it is a nonocclusive blood clot so it isn’t blocking or hurting anything yet. The bad news is they don’t want it to get worse so after my last chemotherapy early tomorrow morning they plan on scheduling the removal of the line. They are discussing waiting to put another back in, which would go in my other arm, as I am done with chemotherapy for awhile, but I am such a hard stick it may be necessary for nightly blood draws regardless. The chest tightness is actually mucositis which is an inflammation of my digestive tract and due to the inflammation of my esophagus there is quite of a bit of pain in my chest. I will tell you that it is not a good feeling and even with all of the test results I can’t help but think my heart is having issues. Things with my throat have gotten worse as the day has gone on and tonight it has been a bit difficult to even swallow. The only real options are pain medication and to do my best with everything so I hope this can pass quickly. The craziest part is I completely forgot I was due for another LP, spinal tap, this morning but that got postponed until tomorrow due to everything else. I am not looking forward to laying on my stomach/chest with this pain.
Bryce came by just in time to save me from a complete stress meltdown and was thankfully extremely cheerful today. He had tons of energy thanks to Grammy getting him down for an hour long nap this morning to fit our new attempted schedule. We spent the afternoon wearing one another out and I got to walk him to sleep before he left with Grammy. Every moment with him makes me feel so blessed even in this difficult time and I cannot stop thanking God for allowing him to come before all of this started.
Mommy cuddled up in the chair with her little man.
Grammy holding an easily distracted Bryce.
January 29th, 2013- My 24 hour chemotherapy ended last night but today was probably even busier and tiring. I started receiving my next chemotherapy which I will be getting every 12 hours. Each dose takes about 3 hours to infuse and its main side effect is dry eyes to the point of cornea damage. As a result I am receiving eye drops every 6 hours which they say should make everything a-okay. I also started taking leucovorin which is the rescue drug from the methotrexate. That is also taken every 6 hours so I am kept very busy. Tonight I will be getting various treatments and checks at 11:30pm, 1:30am, and 5:00am I wonder where I will fit in sleep. My day started out okay with the constant fluids but tonight found me with a tight chest and bloated stomach again. More lasix seems to be helping but it is such a scary feeling and I can’t wait until I am done with 24 hour fluids.
Bryce came early today immediately after his doctor’s appointment. My poor little man got his 6 month shots so he had his ups and downs for sure while he was here. He is always such a trooper but I wish I could do more for him when he is hurting. We did give him Tylenol but he decided not to like it today so it meant a brief bit of very angry Brycey as he got it all down. Amazingly his legs seemed to feel better while he was standing so we did a lot of listening to the radio to try and get him dancing and amused on his feet. He left with Grammy as he got very squirmy and sleepy while I fell asleep.
January 28th 2013- I have been receiving my 24 hour chemotherapy infusion since 4:00 AM this morning. My pH levels quickly cooperated and reached the desired levels so they were able to start early, which I also wanted so it could be over sooner. I did wind up having an issue with having too much fluid again last night but instead of having swollen feet and legs I wound up with a heavy feeling in my chest. This can be more concerning due to the fact that an overabundance of fluid in the body can cause it to seep into my lungs which can be problematic. They gave me lasix again which kept me up a bit as they started the chemotherapy but I was able to feel better and get some sleep after an hour or so. Other than continued concerns about the amount of fluid I may or may not need the chemotherapy has been blessedly uneventful. The typical worn out feeling has definitely started today as well and I often can’t seem to stay awake regardless of what I am doing. I am still on track to receive the next chemotherapy tomorrow as well as the rescue drug so hopefully I will get through all this quickly and just start feeling better.
I found out that my new regimen calls for two LPs, spinal taps, one this week and one next week but they are working to coordinate them with the interventional radiologist that has done such an awesome job on my last few. I am not so concerned about getting LPs anymore, although the nervousness the day of is guaranteed, but I still don’t like the lasting soreness that comes with the bone marrow biopsy. My lower back still feels a bit beat up since my last biopsy even though the procedure went very smoothly. I won’t be getting another for almost a month so hopefully I will be all healed up by then.
We were really worried about Bryce visiting while I was hooked up to chemotherapy but David reminded me how bad we both felt the first, and hopefully last, time we skipped his visit. We decided to just be extra careful and I didn’t hold him unless he had absolutely no way to grab any of my lines. He was very expressive today in everything he did and especially had a lot of fun dancing to the radio with his daddy. I was able to walk him a bit before he left but I was exhausted and he was fighting sleep, so I went for a nap in my room while Grammy took him for a nap in the car.
Bryce says, “Are we done with pictures Mommy?”
January 27th, 2013- I received the Rituximab over several hours today and thankfully had no reaction to the infusion. It went over about 4-5 hours and began really slowly due to the risk of allergic reaction. The nurse would come in every 30 minutes to increase the speed of the infusion as it became less and less likely that it would have an adverse effect. I was also hooked up to the blood pressure cuff and heart monitor the entire time. Just in case, they did dose me ahead of time with benadryl to hopefully take the edge off if I did have a reaction. I will receive another dose in about a week.
I woke up this morning to extremely puffy legs and feet thanks to the constant fluids I have been getting via IV for the last 3 days. I received a drug called lasix this morning to help clear some of the fluids out and got a fancy new pair of socks, really tight, to compress my legs and bring down the swelling. I will be receiving a LOT more fluids with sodium acetate added in them because my pH needs to be at a certain level before I can start the chemotherapy drug tomorrow. The drug is high dose methotrexate and it is given as a 24 hour infusion! Immediately after the drug finishes I begin taking another drug called leucovorin in order to rescue my body from the first. It is apparently a pill which I will take until the methotrexate is completely out of my system. The whole process sounds extremely intense and is definitely a bit concerning and scary! I will get through it and I will move on to the next part of the treatment.
Of course my little man stopped by today for his daily visit with Grammy and Grampy. He got three new toys, belated Christmas presents, today and had a lot of fun playing with each. He was really silly today with his antics and kept my spirits high especially since I was nervous about today’s treatment. Bryce had his first little play date today with one of the nurse’s little boy, who is a few months older than Bryce. They were so extremely cute together, especially when he would reach for Bryce and Bryce would lean away with a “what are you doing?” look. I can’t wait to get out of the hospital and have many more play dates for Bryce. Grammy fed Bryce real mashed up bananas thanks to Grampy’s hard work. He seemed to like it, but was rather full already from a bottle and didn’t eat too much. We said our goodbyes without our usual walk because of the machines I was hooked up to. I miss him so much!!
My spiffy tight knee socks.
Bryce enjoys the taste of his second Christmas.
January 26th, 2013- Today has been another break day and thankfully my liver counts continued to improved as hoped. The doctor said I would not be needing a liver biopsy because the behavior in my counts was completely expected from several of the drugs I had received. He also said that my counts had improved enough that they would be starting chemotherapy again tomorrow. This round is four straight days of chemotherapy only but one of the drugs requires a rescue drug to be given for a good while after in order to help the body recover. I will also be receiving an additional dosage of a newer drug called Rituximab that specifically helps target CD20 B cells, which were seen in high amounts in my bone marrow biopsy. The good news is this dosage has no real concerns for additional side effects but it is possible that someone can be allergic to it so they have to be very careful the first time it is given. I am worried about additional side effects from this new round of treatment but I know that I will get through them all no matter what happens.
Bryce came for his visit and I made sure to save up a lot of energy for him today. We took his 6 month pictures which was a lot of fun, he is getting so big! He also tried sweet potato baby food again and while he didn’t eat it all he was enjoying what he felt like eating far more. I am trying to find more ways to play with him while he is here but since the floor is very off limits we only have a few small places for him to roll around. All the more reason for me to beat this as quickly as possible and get home.
Happy little man.
Yeah, you know I’m cute.
Holding Mr Bear’s hand.
Hey did you take of picture of me holding his hand!
January 25th, 2013- Today has been an excellent day for news and with how I am feeling, not to mention Bryce’s extended visit! My liver counts improved today and will hopefully continue on that trend so that we can safely move forward with my next chemotherapy early next week. I met my transplant coordinator today and she was extremely knowledgeable and helpful. She let me know that she had already found me 196 matches in the donor database should my brother or sister not match. We were a bit worried about finding a donor because of my lineage, half Taiwanese half Lithuanian, which can be a large factor but that fear has been thoroughly squashed. We asked tons of general questions and one that is unfortunate, but only for convenience sake, is that they cannot utilize a portacath for transplants so I will be getting an exposed central line on my chest with three caps. Hopefully that is easier to take care of during showers than my arm picc line has been. The liver consultant did stop by to say that I may be getting a liver biopsy to ‘check things out’ on Monday but my main doctors seem to be leaning towards that being unnecessary if my liver counts continue to improve. I definitely do not want to face yet another procedure so I hope that it doesn’t end up happening.
Bryce had his extended visit today which was amazing for me, even if I was exhausted after he left. He stayed with us from around 12 to 4:30 this afternoon and I could not have been happier. I have several videos from yesterday and today I will be posting but his dancing today was absolutely hilarious. He has a new habit of twisting his wrist around especially while music is playing. I also got to talk to our nurse while David walked Bryce around for a nap, I wasn’t able to get up because my glucose was getting low, and she was so awesome and friendly. I did get my goodbye laps in with Bryce at the end of his visit but he wasn’t feeling nap time so we just let him go after several laps to sleep in the car. It’s funny that not seeing him other times in the day can be so tough and yet he makes me so much stronger and fight that much harder throughout this whole battle. I will be forever grateful that I had him before all of this started.
Like father like son!
One of these days Bryce will decide which finger tastes best, until then he will eat them all.
Bryce dancing today with his funny hand motions.
Giggling Bryce, from yesterday, which can lift up anyone’s spirits no matter what!
Bryce discovered a new funny face yesterday, I just hope it doesn’t get stuck that way!
January 24th, 2013- My stomach has been continuing to cause me a significant amount of pain which made sleep difficult. I did eventually take some ativan and oxycodone and was able to get a bit of drugged sleep. For those of you that don’t know I really hate pain medicine due to the fact that I watched my Father pass away from cancer while being constantly doped up on morphine, oxycodone, and many others. It scares me to my very core thinking I will be stuck in a haze of pain medicine during this process and it makes me hold out longer than I maybe should before asking for a dose of anything. David and I are working hard to overcome this fear and keep my pain at a reasonable level.
Today has been a lot of questions with little being done for now. The ultrasound looked relatively good but one of my liver counts has been elevated slightly which is not surprising because many of the medicines I have been on are processed by the liver. The downside is that the next ideal chemotherapy regimen will be very hard on my liver so they need to ensure that everything is working at peak strength. They stopped several general preventative drugs for anti-fungal, anti-viral, and anti-bacterial due to the fact that they are all processed by the liver, in order to give it as much of a break as possible. They pulled in some additional consultants regarding my liver who will be continually following me during this next treatment.
We are still awaiting our meeting with the transplant consultant who is a sort of case worker that helps with scheduling and coordinating donors. We will hopefully meet her tomorrow so we can ask some additional questions and more importantly get the testing kits out for my brother and sister. David immediately asked yesterday if he could be tested and was told that it is extremely unlikely that we will be a match and that they have a near zero demand for white caucasian males since they make up a large percentage of the donor list. Also it would not be a covered expense.
My blood pressure and glucose levels stayed stable all night and throughout today so they are starting to lean towards the root cause being how we stopped the steroid. It is definitely good that it is not an infection but I am ready to be done with steroids so I can build back up my strength. I can barely get around on my own at this point and I am working very hard to even keep that amount of muscle.
Bryce came for a nice long visit today which was exactly what I needed after the news yesterday. Today was a sort of practice run for tomorrow because Grammy and Grampy are having to drop him with us for a few hours. We tried another new baby food today, sweet potatoes, and were met yet again with disdainful indifference. He seemed to enjoy the first few bites but then may have realized it wasn’t his usual cereal and decided against the whole thing. We got to keep him during his nap but with our limited options we just wheeled him around in his stroller while he slept. We “suped” up his ride today with some nice collapsible saddle bags to help with everything that continues to be lugged back and forth to the hospital. The best part of the day was when David imitated a hiccup and Bryce burst into gleeful laughter. We spent the next 20 minutes laughing with him as we made silly noises. I cannot wait for another extended visit tomorrow! It definitely is not the same as being home as expected but I will take every second with him to help keep how much I miss him at bay, not to mention how much hope he gives me and how high he keeps my spirits.
Mommy holding Bryce!
Sleepy little man curled up with covers turned blankie.
Bryce getting ready for his new baby food.
January 23rd, 2013- I received the news that I am not in remission as was hoped and will be going forward with the expectation that I will be receiving a bone marrow transplant. I will update this post sometime tomorrow but I am not up for much more right now. Please pray as hard as I am that this all turns out well.
*Update* So yesterday was definitely a whirlwind but a lot happened even outside of the bad news. I had a rough night being NPO, unable to eat or drink, for the ultrasound of my liver and gallbladder. The procedure was meant to be first thing in the morning but it was initially delayed due to several ER patients needing ultrasounds ahead of me. The actual procedure ended up taking a LONG time and I didn’t end up eating or drinking anything until around noon. Last night my blood pressure had also come back low consistently and that continued throughout most of the day. On top of that they found that my glucose levels were low which at first was believed to be a result of the NPO. However, after I ate my glucose failed the rise and they started to be concerned that I may have developed an infection even though I was not presenting a fever (the steroids could have suppressed a fever apparently). The other possibility was that the abrupt halt in my steroids had caused issues with my adrenal glands and that my body was not recovering well. I wound up being pumped full of antibiotics and was started on a new steroid to slowly ween me off. By the night my blood pressure had improved slightly and my glucose was holding to a reasonable number.
In the midst of all of this I was then told that the initial chemotherapy had not been successful in getting my leukemia into remission, approximately 50% of the biopsy was blasts (cancer). The new plan is being discussed by many doctors but will ultimately result in another round of chemotherapy in the hospital, 30 days, with the goal of remission, which will then be followed by a bone marrow transplant. I do have a brother and sister who will be tested soon and are both wishing they can be the one to help me beat this disease. It is a TON of information that has been coming in regarding the whole process but step 1 is remission and step 2 is finding a match so I will start there!
Bryce did not come today because I was barely able to stay awake for most of the day not to mention that I did not want him to catch any possible infection. That alone made my day extremely difficult.
January 22nd, 2013- My LP and bone marrow biopsy were both done by lunch today and went very well. I slept throughout most of the afternoon but continue to feel beat up and worn out. I may be a bit dehydrated as well since my blood pressure was a bit low for my evening vitals and I am now receiving a fluid bolus to help. I am still worried that any quick fluids will just make me feel bloated and sick thanks to the steroid but finishing the steroid yesterday may mean I am quickly getting past that issue.
Last night started out well but I had a rough early morning because of a miscommunication that lead me to believe I had to be NPO starting around 4:00am. NPO means I am not supposed to eat or drink anything and was believed to be necessary for some reason due to the procedures I got today. This had never been the case before but despite David questioning the order I followed it until the doctor arrived at 7:30am. We brought it up again to the doctor who gave us a confused look and said he would double check but he did not believe that was needed. By 8:30am I was more than a little thirsty and hungry but was told I could eat and drink without concern. I definitely did not realize how badly I need to take little sips of water in order to help soothe my sore throat. The next bit of bad news is that they will be doing an ultrasound of my stomach and gallbladder tomorrow morning which DOES require being NPO starting at midnight, I am not going to enjoy tonight.
Bryce came by when I was feeling very awake and good shortly after my bone marrow biopsy was complete. We hung out together in my bed while I waited out my required bed rest which was good cuddle times for mommy. David and I read him several books and played until he was a giggling crazy man. The best part of the afternoon came while we fed him his usual baby cereal. David held him while I spooned in each bite which started out well. At the end he managed to get a stronger grip than me on the spoon and after I let it go he proceeded to swing it around like one of his toys, while it still had food on it. Needless to say David wound up with it all over his shirt and in between fits laughter we decided he was done. Sadly our visit ended before our walk because the nurses said my heart rate was very high and I needed to lay down, so Grammy took him home since it was almost time to go anyway.
Bryce gets his reward for being so good for pictures, a mouth full of the fascinating paper.
Me getting a little Bryce time!